Journey Through Lyme

noreply@blogger.com (Elizabeth Anne Saulnier) — Mon, 24 Dec 2012 08:02:00 +0000

Its after 1 in the morning and the mind won't leave me alone. It has been unpeaceful for a couple weeks now and I think its compounded by Christmas knocking on our door. It has the ability to really make one contimplate or evaluate their life and where it is. I find myself extremely lonely and dissatisfied with where I am. The thought that keeps coming into my mind (with thousands of others) is how I never, in my 39 years of life, ever dreamed, imagined, even thought possible or considered that before I would turn 40 I would be waiting to hear on a disability case for myself, fighting to keep my head afloat as I slowly, day by day watch my body deteriate and gradually lose more and more independence in what I can do physically and mentally. Isn't this supposed to come later in life? Much later?!?! It wasn't my plan and I have fought it but I'm losing the ability to do that as well.
As I watch what seems like the rest of the world "moving on" its almost an out of body or fly on the wall kind of experience where you watch but you aren't a part of it. This adds to the loneliness. As I look at the relationships in my life or not in my life, I am saddened and full of questions and filled with pain. Its that kind of circumstance where I'm sick with faculties getting less and less each day, so when I have interactions with people I must look blank faced, and since the cognitive takes so long or doesn't happen at all I also must come across as anti personal....lacking interpersonal skills. This hinders relationships. But I'm not getting any better so this gets worse and the relationships further deteriate. This coupled with people who gave up and became apathetic a long time ago=lonely. I am thankful for the few relationships I have that encourage me and help me feel like a vital part of life and not just some forgotten, incompetent, worthless piece of trash that is easily discarded.
Tonight it has been the worst with the mind being relentless in its questions and feelings. I figured I could lay in bed and get the pillow all snotty as I am tormented by these thoughts that won't be resolved tonight, or I can get up and be productive....somehow. Part of that productiveness is venting my thoughts and feelings. Chris thinks some of this is the antibiotic (we've seen medicine do this before. Heaven knows we have been on enough) but I think a big part is the fact that the body is gradually starving to death and therefore the mind isn't getting the nutrients it needs to work properly. This on top of whatever illness/disease I have does not make for a happy recipe for healthy relationships in my life. No, its a vicious cycle and quite frankly, it sucks. It sucks to be 39 and not be the wife my husband needs or the mom my children needs or be an active part in my church or be able to meet the needs of friends who are hurting and fighting for their lives as well. Oh how I long to be well and a vibrant part of life. Oh how I long to not be taken care of more then I can take care of others. Oh how I long to turn 40 and see the other side of this stuff and to dance and shout and sing and function and meet the needs of my husband and children. I have all but lost hope for that. I am so drained and exhausted from all this that I have lost hope in seeing that day. I shared that with a dear friend and she encouraged me by saying, "that's okay. Thats what friends are for to take up the prayers and pray for you when you can't find the strength to do it anymore." The fact that nobody understands or gets it makes it more lonely. When they just give up on you it makes it impossible to continue fighting.
I am a fighter. Always have been. But lately that is one of my questions. Why do I fight? Has it really served me well to fight? Have I gotten anywhere? Would it be better to just lay down my fight and surrender? I worked this over and over in my mind one day. If this is where God wants me....if He has no plan to bring me to wellness, then shouldn't I just surrender and accept it? By not accepting it, and by continuing the fight, am I acting disrespectfully to Him or ....not sure what the word is I'm looking for here. Is it wrong to continue to fight if this is His plan for me?
I'll tell you, it is no fun feeling like you are alive but are a burden to everyone around you and that you are just tolerated but that everyone would be freed if you were gone and that there is nothing you bring to the table of life....nothing...and if you did, it would be quickly swiped away by others at the table that don't believe you can do anything. Its an awful and tormenting feeling. A useless feeling. Why haven't I given up? Isn't it humanly natural to give up under those circumstances? What keeps one person going and another to quit? Don't we all hunger to be useful?
Just my thoughts on a sleepless night when I feel the mind is winning control and I feel unable to combat it. I don't have the strength to fight it off and sleep is unable to give me a few hours of peace and escape. I believe my friend is right in that we need others to fight for us in our times (in my case, years) where we are so tired and exhausted and weak that we can't fight for ourselves. But what do you do when it feels the world has turned their back and given up on you, and the few that haven't are asleep? :-0 Anyway,.......

What Was Accomplished?

noreply@blogger.com (Elizabeth Anne Saulnier) — Wed, 24 Oct 2012 23:00:00 +0000

In spot where I need to blog. Partly to document what has happened since I forget most things and partly as a way to work through how I am feeling. Again, if you have difficulty with raw emotion, someone being real and putting everything out there, or will have difficulty taking things personally, please stop here.

Chris went out of town Sunday afternoon, October 14th to a pastor's conference. We didn't have a menu set up for the week. I managed to get dinner made that night and did baked fish rolled in cashews and almonds (that were put through the food processor) and green beans and rice. The meal, to the best of my knowledge was "legal". Yet, as usual, it upset my stomach. Monday morning, in trying to trick my psyche to eat because that is what I have to do these days (it has to be fun, special, unique, new, etc) I decided to juice. The doc had said I could introduce fruits in a little just to get something in me. So, I was excited to juice a peach, pear, grapes and blueberries. I took two swigs and couldn't finish it. It didn't taste right, it smelled funny and I completely rejected it for some reason. I decided I was done for the day. But wait, we have dog training that night and with Chris out of town it would be easier on me if we just ate out afterwards at Chili's. We have a friend go with us and she didn't want to go and I didn't want to take two cars (I love talking with her and having her company) so I decided I would just fix something for the girls at home and thats it. Hotdogs are easy and require a whole lot of thought, time or energy. I can manage that. So I did, but that meant I didn't have anything to drink or eat the rest of Monday.
Tuesday, I just had water and everytime I drank a little bit of water, it sent me to the bathroom where I am sick to my stomach and spend the rest of the next hour going back and forth to the bathroom. Again, I tried to set something up to I would eat. Tuesday nights Maddie has dance and Becka has gymnastics and with Chris out of town I needed something fast. So, I thought I would grab a stuffed crust pizza on the way home and I had planned on "cheating". It wasn't great but at least it was food. We got home and I was waiting on Madilyn who was being brought home by a friend and I filled up my glass with decaf tea and a little agave and took one sip and I was sick to my stomach for the next hour. After that, not interested in food and gave up and decided to go to bed with the girls.
Wednesday, was the same story. By Wednesday I am in bed unable to function. The weird thing is I felt good digestively (other then the diarrhea). I was blown up like a beached whale hurting from pressure and pain all around the rib cage and stomach, and I wasn't nauseated. I was fighting killer headaches and weakness. I couldn't get up without the heart racing and a shower would have wiped me out completely.
Chris came home (poor guy) to all this Wednesday evening.
Thursday morning he calls the doc and she told him something was definitely wrong (you think?) and tells him to take me to the ER to get fluids and that I was scheduled for an endoscopy Friday morning at 11. We pack up the girls, ship them to Grammy's and of we go. We decided to go to the ER at the hospital where her office is, thinking it would make it easier for the ER to consult with her, my doctor, who knows everything about me and what we have been dealing with.
The ER was great other then the extremely small and hard half bed I had to lay on. The doctor came in, Dr. Smith, and within 5 minutes said he wanted to admit me. He explained he didn't feel comfortable with just giving me fluids and sending me home only to stay the way I was. I was horribly dehydrated and hadn't eaten in 4 days. I was asked if I wanted meds for pain and initially I said no. But my head was splitting so badly and I was afraid it would kick into a migraine and then I would be completely sunk. Also, my lower back was starting to really hurt, I figured from the rotten hard half table I was on. I was moved to a better room and bed and I asked if I could have something for my headache and I was given morphine and zofran meds through my port they accessed (yeah!! Love my port. It makes things so much easier for all involved). Blood and urine came back fine (if I remember correctly), I already had a bag of saline down and was working on the second when Dr. Smith said he spoke to my doc and she was leaving it up to him and us as to whether we were admitted or not. We talked it over and decided that at least at the hospital they could help me and I would at least be hydrated. So we agreed to be admitted. We were told that they were filling out registration papers to be admitted. Before being transferred to my room I finished the second bag of fluids and they started a bag that was potassium and sugar. Wasn't crazy about the sugar part since we are trying to eliminate all sugar for the yeast over growth.
That night I was rolled to the fourth floor to my room. Chris left to take care of things at the house and grab what was needed to spend the night at the hospital. A friend of mine happened to ask if I wanted her there and not wanting to be by myself because of memory, comprehension problems and past experiences that causes me to believe every patient should have an advocate, I said yes.
The doctor on call came to visit. An Iranian (there was not one English speaking nurse or doctor on this floor) dude who kept getting paged out of my room. He asked questions as if he was having to figure things all out on his own from scratch. He would ask a question, I would answer and then he would ask another question that required the same answer. He said he wanted to do a blood test to check for acidity....didn't quite understand that, but then again, I understand very little any more. I'm trying to trust that they mean well and are trying to help me. I tried to communicate all that was going on related to my stomach and throat. I didn't go in telling anyone about Lyme because I was there for my digestive issues, but then they would ask why I have a port and I would have to say for the treatment of Lyme. Oh how this results in a ray of responses. People are either inquisitive (they usually not educated on Lyme but are open minded, or they don't know, don't ask questions because they think they know it all....in reality they have the wrong opinion and knowledge about Lyme=closed minded). I don't remember much else about this doctors visit except his bedside manner with me felt very awkward and I didn't feel like I was a participant of the conversation or listened to, just tolerated. The next thing I know I am being switched off the bag of potassium/sugar back to saline because this doctor doesn't want me on it because you shouldn't be on it unless your potassium is low and that the ER just automatically puts people on it when they shouldn't. hhhmmmmm. Then, the night nurse comes in with her med cart (I came to resent the med cart particularly when it was accompanied by the night nurse) and she says he wants me on protonics.... and lovenox, a blood thinner. I am confused at this point because when the medical facility that I was scheduled to do my endoscopy at the next morning (which got cancelled as soon as I was admitted) called to go over information, I was told not to take aspirin or advil or any blood thinners at all till after the procedure. So, I asked the night nurse why the blood thinner since we were still planning to do the procedure. only at that hospital now the next day, and I had been told not to do blood thinners. All I would get was, "I don't know". The lovonex is a shot in the stomach....joy, joy, yippee skippee. The protonics I think it was explained to help with the stomach cramping. Did not quite understand the necessity of these two medications...just felt a red flag of "something isn't adding up". I was consistently given morphine and zofran. I now was unable to urinate without extreme effort that made me feel like my blood vessels were going to pop in my head. I asked the night nurse if it could possibly be the morphine and I got, "I don't know". My back continued to hurt but then I would get a dose of morphine and it would be fine. However, late that night (around 11 or 12) I felt my back and my head start up and it came on fast and furious. I was due for another dose if they were going to give it to me. I got up to try to urinate but couldn't go and every time I tried the pain kicked up a notch to the point that I gave up trying to urinate and made it back to my bed. When I hit the bed I was in so much pain I couldn't find a position or hold still. It was the worse pain I think I have ever been in and I couldn't explain it. I was given the next dose of morphine and within 30 minutes it calmed down and I found a spot I vowed not to move from for a really long time. I was pulled from all liquids and food (ha!) at midnight due to the endoscopy the next day. Also, the night nurse raved about my doctor and how her husband used to see her but said that she doesn't come around the hospital any more.
The night was rough with our room being across from the nurses station and they "partied" all night long. I kept telling the night nurse my head was splitting and she just kept saying, "hhhhmmmm, I'll call the doctor". I longed for 5 a.m. when I figured my doc would begin making rounds and the night nurse would switch out for the day nurse. I mentioned my head splitting again and she said she called the doctor twice last night and he never returned her phone call. That made me feel safe and secure. 8 a.m. painfully and slowly rolled around and the night nurse was still there. Ugh. Finally, the day nurse came in. She said that a call had been put in to my doctor for a consult. Chris had also called her office. I explained to her that I couldn't urinate and could it be due to the morphine. She actually looked at me and said yes and lets get off the morphine. Yeah! Thank You! I also explained that my head was splitting and she asked what I normally take for headaches. I said Maxalt or Cambia and she said she would talk to the doctor and low and behold I had a Maxalt in my hand and had relief within an hour.
Somewhere between the night and day nurse and due to the severe back pain episode the night before, the doctor scehduled a CAT scan of the abdomen and pelvis. I was given barium to drink (blah) which was the most I had to drink at one shot in at least 6 days. I was determined to get it down and keep it down. Somewhere around 11 and noon I was picked up for the CAT scan.
Before going down for the CAT scan, after the hospital not getting a call back, and Chris not getting a call back, Chris went up a couple floors to my doctors office to talk to them. They informed him that my doctor does not have privileges at this hospital and that her colleague would be down to see me. Ugh! How frustrating. I don't want to see her colleagues. I wanted to see her who has been working with me since July and knew the whole history and what was going on. So, were we going to do a scope today or not? Crazy!
Down at the CAT scan the technician started to explain that she was going to put dye in my iv and I explained I didn't have an iv but a port. She said something about she would have to hand push it in and wouldn't get as good as picture with the port doing that as she would with an iv. Well, I want good pictures so things are clear as to what in the world is going on. She started the tourniquet after looking for a good vein and then stopped. She explained that she would only be able to do it if my port was a power port. I said it was and then she said it would have to be a Trillium kind and I said I believed it was. She asked if I had my paper work for my port. I said my card for it was in my purse. She sent my husband to get it and started to hook the dye up to my port to be power infused. The CAT scan went quickly and I was back to my room. We had a few minutes before the doctor of the day, came and things took a turn for the worse. Still
Dr. Xie came in and walked up to my bed and started explaining that he felt that what was probably going on was something chronic but that they were waiting to get the CAT scan results. He said some other things but it was when I tried to communicate what was going on with my throat that things turned south. He looked at me very intently, coldly, and said he had talked to my doctor and she shared that the endoscopy a year ago was "unremarkable". I about fell out of bed. I looked at him intently and said, "really? because i have the picture and the report that show that the esophagus was so inflamed she told me she didn't know how I got water down." He responded by saying, "Well, she didn't share that with me." as if because she didn't share that with him I must be lying. At this point I hit the wall. I had tried to communicate, cooperate, trust, follow along up to this point and I hit my limit of not being taken seriously, or listened to or helped, and lied to and treated like I had been admitted to the pysch ward instead of the medical floor. I felt trapped. I was there to get help and I can't leave until I get help but they won't listen to me and take me seriously so I'm never going to get out of there. I rolled over. He left the room and I spewed exactly what was on my mind including what I thought of Dr. Xie. I had had enough! We had been at this hospital for 24 hours, now 5 days without food and I had been cut off from water over 12 hours ago (not a pretty picture) and we were not any closer to eating and getting to the bottom of what was going on. We were basically just "hanging out". I looked at Chris and said, "Get me someone I can ream up and down now!". We have been in this spot before where we were treated unreasonably and so we are familiar with Patient Advocacy. He got them on the phone and within 10 minutes Brian from Patient Advocacy was in my room. Chris shared a little of what was going on and then I shared that I didn't feel listened to, that I felt I was treated as if I was stupid, all the contradictions, etc. He went on to share that we were not actually admitted to the hospital. I about flew of the handle again. What? He shared we were on the observation floor. I explained to him that Dr. Smith in the ER said he wanted to "admit" us and that he was filling out papers to register us to be "admitted". Did that sound like the "observation" floor? He said that there wasn't much of a difference (obviously there was) and Chris made a comment about insurance and Brian explained that on the observation floor you are billed by the hour and when admitted you are billed by the day. No wonder they wanted to drag their feet. He also went on to say that my doctor does have privileges in that hospital. Another contradiction. I asked him if he could possibly fathom how as a patient all the contradictions could make one not feel confident in the care they were supposed to be receiving. I told him that nothing had been done shy of the CAT scan and that I could just as easily be miserable at home then at the hospital where I am not listened to, treated seriously and the communication is non existent. I told him that if they weren't going to help me then please discharge me now. He explained he would make some calls and he brought up Dr. Xie and I explained I did not want him as my doctor any longer...didn't want to see nor wanted him to step foot in my room after the way he treated me. He explained that in order to do that Dr. Xie would have to talk to the group of doctors he is a part of to get one of them to take the case. Hhhhhmmm. let me see if I have this straight. He has to talk to the others in his group, aka tell them about crazy lady on the fourth floor and convince one of them to take my case. How is this in my best interest?
Brian walked out of the room and just outside my room was another lady all dressed up with a huge grin on her face as she watched him walk out of my room. I know they can hear through the door because I had to listen to the nurses all night long. It wasn't 2 minutes before she knocked on my door. She was also part of patient advocacy. I figured it wouldn't hurt to tell her either so I shared everything with her. She said Brian was making phone calls and was right on it. She left and he walks back in saying he had spoken to Dr. Xie and and he was talking his phone rang. It was Dr. Xie saying that he had spoken to my doctor and that she will come down this afternoon and do the scope. The best news and the most help I had received since the fourth floor. It didn't change how I felt about him.
It wasn't long before the day nurse came in and said she had good news for me. She said that they would be there shortly to take me down for the endoscopy. At about 2:15 I was wheeled down to the endoscopy part of the hospital. They must have "Lyme" in my chart because two nurses started talking to me about it. I don't know why it throws me off guard each time. Maybe because I never know how its going to go. One of the nurses was very interested in talking about it because her daughter had been diagnosed with it and was now in Chicago being treated. Everything was set up (wasn't much and didn't take much time) and another nurse came to wheel me back and she had a huge, goofy grin on her face. I asked jokingly why she was looking at me like that and she commented on my blanket (I had brought my own blanket). I guess they don't see that very often. But she kept looking at me funny. She wheeled me back to the room and we waited from 2:30 to after 4:00 for my doctor. I didn't mind. I would have waited longer. Just knowing she was coming was peace enough. I dosed in and out and then she showed up. I was a little nervous as to how she would be after all that had gone down but she was just as friendly and cordial and caring as usual. I briefly explained this was day 5 of no eating and that even drinking water made me sick to my stomach. She mentioned that when her patients are admitted they always see her colleague Dr. so and so. I explained that it was just explained to us that we weren't even admitted. She came up to my head and said, "Elizabeth, nothing is going to happen over the weekend. Do you want me to discharge you?" Absolutely!!! and the next thing I know I waved goodbye as I went under.
The doctor explained to Chris that the scope showed the throat, esophagus and stomach to be inflamed and that there was bile in the stomach that they pumped out. She gave Chris a prescription for Carafat, a liquid I am to take before each meal to coat the throat and stomach.
I woke up back in my room. I do remember hearing Dr. Xie in my room. He handed Chris a prescription for Carafat (pills, not liquid, and 3X a day, not at meals....idiot) and said I was being discharged. Incredible!! It was explained it would take a while before all was set to discharge me. They had to bring someone up from downstairs to unaccess my port because no one on that floor was certified to do it. All of sudden I was told I could order dinner. Really? Nothing had changed but all of a sudden I can order food. Chris ordered chicken broth, green jello, fruit ice and chocolate pudding (I knew that wouldn't make it down). Chris left to transfer the girls from Grammy's to God Parents for the weekend and take care of a couple things. I did not like being left alone after all that had happened. I wanted a witness to everything and more importantly, an advocate.
The day nurse gave me the carafat, in pill form and explained to me that it was supposed to coat my throat and stomach. I asked her how a huge pill is supposed to coat my throat and stomach and she said, "I don't know". Doesn't anyone read my chart that says I choke on things? My "dinner" arrived by a tall, very thin lady who wouldn't look at me and very grumbly said the words you knew she was trained to say, "have a good night". I look at my tray and there is the chicken broth, jello, fruit ice and pudding. Wait! What is this? A bit styrofoam cup with a straw in it. What could be in it. Chris didn't order sprite or anything to drink. I picked up the cup and looked through the top and the bottom quarter of the cup had ice and there were brown spots all on the inside of the lid and cup as if this cup had coke or soda in it at one time. Um, gross. Its a used cup. My day nurse came in and I told her I wasn't sure about the cup. She picked it up and immediately said, "ewe!!!" I guess she gathered what I had gathered. She took it to dispose of it, but specifically outside my room, but as she got to the door she turned around and asked, "Are you sure one of your guests didn't leave this in your room?" Really? Please get me out of here!!!! I very nicely, but firmly said, "yes." I am sick, not STUPID!
The broth actually tasted good as did the jello.
Night nurse rolled in. Ugh. Same as the night before. I am sure she has been updated on the happenings of the day. 3 nurses from downstairs showed up to unaccess my port....3 and then the night nurse walked in....make that 4. Afterward, the night nurse said she was going to go ahead and get my discharge papers all done so when my husband showed up we could just leave. Why, thank you....I think. Next thing I know she walks in with the meds cart. What? She said, "I have your meds" and I said, "what meds?". She had another carafat pill and the third lovenox shot. Um, I don't think so. I told her I had just taken a carafat with dinner. She explained that I am supposed to take it three times a day. I said, "um no, it was explained to me that I was supposed to be a liquid and I was supposed to take it before meals. She insisted that the doctor wrote it for three times a day and the next dose would be in the morning. Of course, this is the ignorant doctor that I asked to be removed from my case. I made some comment about hoping she didn't have to deal with me choking on it. It did get stuck in the middle of my throat. She then got the shot ready and I asked why I needed it. She said she didn't know. This is why I like an advocate around. Sick people don't have the strength to stand up for themselves and defend themselves, and they aren't taken seriously. I figured and proceeded to inject it in my stomach where the last one had been injected that morning. I figured I was on my way out, I had fought my battle and didn't want them to change their mind in discharging me, only to really send me to the pysch ward. So, I bit my lip and counted the minutes.
Finally, discharge papers came, I got dressed and waited for Chris. 10:00 that night we were out of there.
It was a weird ride home because it felt like nothing had been accomplished. I went in for help and came out in basically the same shape as when I went in. I was all blown up and hurting from the dinner I had. I got home and weighed myself hoping it didn't show more weight loss. I had lost 6 pounds in 2 days before going to the ER. I was shocked. I weighed 129 going in and now weighed 136. How is this possible since I haven't eaten anything? Chris rolled his eyes at me and said, "its the gallon of liquids you received." Wow! This was amazing.
I did get fluids and I am thankful, and so is Chris, that I was at the hospital (what ever status I was) when I had the huge pain attack the night before. It was awful and I'm not sure what we would have done at home. Haven't had anything like it since,....not even an inkling of pain in that area. The best way I can describe it is its as if I passed a kidney stone. Who knows. The whole 36 hours was crazy.

Its now Wednesday. I have worked through some of this. I don't get it or understand it. We aren't much better off. I finally ate something Saturday night (almost 6 days of no food). It did what food normally does which is blows me up like I swallowed a bowling ball and there is so much pressure and pain and nausea and yucky feeling. I had some of a piece of grilled tilapia on Sunday night....samo, samo. We put a call into my doctor Monday and Chris was told that before we come in and sit for hours to see her, she wanted to review everything and would call us back. Bet you can guess what has happened. Yep! We haven't been called back and Chris has called again, and again. I feel as if I have received the boot. If we have, I have no where to go and have no idea what we will do.
The last couple days has been crazy because yesterday I had a huge ravaging appetite. Anything and everything that a normal person can eat, sounded good. I actually wanted to eat but was scared to death to eat because of how I feel afterwards. I had a little grilled chicken and green beans for lunch and left over grilled chicken and black beans from chili's last night for dinner. Small portions but some food. It tasted good also. The whole last week things didn't taste good. Today, I have no appetite and don't even think about eating. I have a clearer mind today but am so sluggish and blah feeling. I can't explain the difference in the mind though but after experiencing today it almost as if the last couple weeks I have been in a fog and today the clouds lifted and there are blue skies. Don't have a clue what it means or why or how....just an observation (and I'm on the first floor :-) ) I was in bed most the afternoon. I get to a point where I can't move or do anything else. The weird thing is I can usually sleep but today I feel wide awake, alert. There is definitely some things going on but I can't explain them. I can only try to describe them in hopes someone somewhere will listen and go, "ah ha! I got it! Its....." That is my hope and dream.
If we are ever asked to go to the hospital again it will be difficult. I definitely won't go back to Memorial Hermann Southwest again. But there is no guarantee that any other hospital will be different. After this experience I decided that it is a curse to have Lyme. Not a good feeling. I feel I will forever have a Lyme spot on my forehead. Only God knows what was and is being accomplished.

Not Adequate

noreply@blogger.com (Elizabeth Anne Saulnier) — Mon, 01 Oct 2012 05:23:00 +0000

I need to write tonight as I can't sleep and want to just document what is going on. I don't think anyone reads these posts anymore so Im not writing to anyone but just need to get some thoughts and feelings down on paper in hopes for some relief. If you can't handle raw emotion or someone who is trying to work through things emotionally, please stop here and don't read.

There is no way to back up and catch up on here all that has happened since I last blogged. This frustrates me but is what it is. I feel I am going backwards and down hill. I feel that after 15 years of this disease wreaking havoc on my body it is now taking my mind. The last couple weeks it has really become more and more evident just how non functioning my mind is becoming. Tonight I came home from my attempt at handbell practice feeling so inadequate, unworthy, incapable, and the list goes on. There were some comments made tonight to me that hurt my feelings extremely and just emphasized my feelings lately that I bring nothing to the table, I have nothing to offer. All I have ever longed for was to be useful and used by God. I feel I have passions but am unable to do anything about them. It frustrates me that He would give me these passions, desires, longing, strong feelings towards things and then not be able to do anything about them. It is so difficult to look normal but have nothing inside me be normal. I am so tired of others expecting me to be normal when there is nothing inside able to function normally. I am at a low spot tonight feeling so inadequate as a wife and a mom and as a person of society. Why am I here? It is abvious I don't bring anything to the table. I feel I do more harm then good. My opinion, feelings, ideas, don't matter. I'm expected, as the sick person, to have it all together, react, feel, function, fix, love, forgive, act, all normally.
Tonight I had the urge to go out to the office and burn all my music. I can't teach it anymore, I can't play it anymore, share it with anyone, it doesn't appear to share any part of my life anymore. Just get rid of it and call it done. This is one area where I feel God has given me such a passion but I can't do anything with it. I can't teach it which I so thoroughly loved! I have tried to teach my own girls but get things all mixed up. Things I have know for over 30 years. I hear a song and it just touches my soul and I love worshiping through it and then I have a desire to share it in church hoping it will encourage others to worship and go deeper. I don't like "performing". But I love sharing. But I can't. I have sung (I am not a professional singer-my voice designed just for God's enjoyment) and I have played and sung in church twice. All by the grace and leading of God. But I feel I am just tolerated or pitied and that it did nothing to bless God or encourage anyone else to worship Him. I am a perfectionist which makes this disease even more dibilitating because I can't be "perfect". This last Christmas we gave gifts of ourselves or gifts that represent our family, what we like, who we are, etc. I gave a cd to a chosen few of my piano playing, not because I am cocky and think I'm great or worthy of a cd, but to share and bless those who got it. I would rather ask for them back then have it sit in homes completely unlistened to and or judged. I felt led to do the cd, I thought I was being obedient (I was actually led to do it many years ago but didn't and thought I better put something together now before I can't at all) and it was a risk to put myself out there. I won't do it again.
I don't read anymore. I used to enjoy reading, including my bible. But because I don't process very well, I don't understand what I am reading most of the time and I can't keep information straight and I can't retain it. I try screaming out or reaching out or try telling people that I don't remember things and I am laughed and belittled because they have moments just like mine. I don't process conversations and I sure don't remember them. I don't put two and two together anymore and all this has effected relationships because people don't understand and they take it personally, even though they know I am sick, that I didn't remember something or put two and two together or I stare blankly at them while in conversation as I don't comprehend or compute the conversation. It is completely frustrating!! I feel like I have brain damage and I feel with each passing day I lose more and more. I have prayed so many times in my life for God to spare my brain, even through this disease, that He wouldn't allow it to take my mind, please spare me my mind. I try to do things to keep the mind working and I have seen where doing school with the girls has kept parts of it from being completely gone but it still doesn't make up for what doesn't work. There is no guarantee that if the digestive system ever does "kick in" and I start absorbing nutrients again that my mind will bounce back and recover...any of it. I've been waiting for 2 1/2 years for a corner to be turned and things to start healing and recovering. I'm losing hope it will ever happen. I don't possibly see how this benefits God, or brings Him glory when I can barely understand His word and wanting to study it but feeling so frustrated in doing so.
I never thought, and no one would understand this unless you have experienced it, that losing my hair would have such a profound effect on me. But it is emotionally debilitating to take a shower and see locks and locks of hair fall out. I can't even begin to explain how it has effected me and yet with each hand full of hair that rinses off my hand and falls to the drain, I feel bits and pieces of me are going down the drain, figuratively and literally.
Its a daily battle to function. To just get up and be what I need to be for my girls and debilitating to go to bed at night knowing I have failed again and again in being what I need to be be for my husband and for my girls. There are days, like yesterday where it looks like all I'm doing is laying on the couch being lazy playing on my phone and yet its all I can do to be up and all I can do is push a few buttons on my phone. Don't ask me to make decisions...I can't. Don't ask me to do anything...I can't. But simple games on my phone...at least there I might accomplish something...how pathetic is that. How I would like to accomplish a camping trip with the family, or dinner most nights for my family, bible study, or a book to read, or a scrapbook, or wait....a clean house once in a while where my husband doesn't have to look for clothes on the floor or in a basket in the laundry room. It is depressing to think of how I used to be and how I am today. I used to manage a classroom of kids (choir....big classes). I used to teach private piano. I used to keep a clean house with laundry done weekly...not just washed but put away for everyone. I used to keep a clean kitchen. I used to cook and plan meals and was able to grocery shop. I used to be able to multi task without frustrations or feeling overwhelmed. Now I feel like a 4 year old that is easily over stimulated with one task and get frustrated if you vie for my attention at the same time I'm trying to focus on that one task. I used to have a great memory...not my husbands by any means ever, but a great memory. I could remember names and I didn't have any problem remembering what I was headed to do and my checklists weren't to remember things but to mark off the many things I did. Things don't get marked off my lists any more.
My how things have changed. But I am just like everyone else. Everyone experiences all this so I am supposed to feel normal and better about it all. I guess everyone else is able to handle it better then I can. I am so thankful for the friends I do have that have stuck with me through these last 3 years and have encouraged me and supported me and not given up on me, judged me enough to have nothing to do with me but have stuck it out and loved on my family. It may be the glue that God has used to hold me together. But there is no way I could have gotten this far without God and the husband and two kids He gave me. I just wish I had more to offer them and I continually pray for God to guard my kids from my short comings and inabilities.
My crying has slowed down and hopefully a lot of my thoughts are on here and won't cycle back and forth in my head too badly now and I can fall asleep. Nothing worse then a sick person who can't eat much and hasn't had enough sleep. I feel I am nothing, an empty shell and I don't feel God filling it to use it. Emptiness. Hollowness. Complete worthlessness. No where near adequate for anything. Complete failure. Maybe at some point the disease will take enough of my mind that I won't realize any of this and won't feel it anymore. Ahhh, what I don't know? Complete bliss.

Inconvenience vs. Blessing

noreply@blogger.com (Elizabeth Anne Saulnier) — Mon, 31 Oct 2011 17:26:00 +0000

I'm at infusion. I can't believe I am starting the 4th week of coming everyday and doing two antibiotics, one of which was marked as "allergy" for the last 7 years. I have had days where it has gone long and I have itched. We have determined that Benedryl through the port does not agree with me at all. So, I do what I can to avoid reaction to this antibiotic so I don't have to have the Benedryl. They can also give me another medication for reaction (decatron?) but it is steroidal. From our research in the beginning, steroids is not good for Lyme but quite bad. However, after our two bouts with the Benedryl not agreeing, and me being pretty adamit about not doing the other (I really don't care to take anything that will encourage the little boogers), Chris found where, if you have to do it, that they prefer you be on antibiotics. Either way, I don't care to have to have it but I also don't want the antibiotic taken away because I couldn't "tolerate" it.
IGenex test came back positive. This is all I know for now until we meet with the doctor and get more specifics. The important thing is that its still positive and therefore she stated we would continue treatment. The Lyme symptoms have really been apparent in the last several weeks. This is frustrating but I am hoping the strong treatment is just bringing out the Lyme and its being killed off with treatment. That's how I choose to look at it for now, but it does nag at the conscience that all the tests will point to remission and I will be stuck with these symtpoms.
Today, yes today, I finally found a lab that may know what they are doing and I will get the other test done this week. Which leads me to my thoughts for the day: Inconvenience vs. Blessing.
I got up early this morning after a rough nights sleep and left the house so I could hit a LabCorp to have two orders of tests done and so I could get to my 4-5 hour infusion, get it done, and get home with my family. After 2 different labs, phone calls and driving around, and a couple hours chasing a place to get this test done I got an answer. Inconvenient, yes. Pain, yes. BUT, in the process I thanked God for a husband that is willing to be home on his day off and do school with the girls so I can take care of this and do this. In the process, I was able to answer several texts from people and listen to a friend share her frustration and be there for her at least by phone. I have another friend whose daughter is having a surgical procedure today and I prayed and texted her that I was thinking about her and praying for her. I was able to "touch base" with several people=Blessing! Lyme has been an inconvenience but also a blessing. Lyme has been very difficult and challenging but very rewarding. Lyme has cost us so much but I have gained so much through it. Through it all it has transformed me both cellular and in character and the way I think. I have been forced to slow down and not do what I thought I wanted to do but in the slowness I have heard God and felt Him tug and pull on my heart. All this and more would not be possible if I didn't have Lyme. I love being slowed down and yet given an ounce of energy I find the old self quickly rear up and want to run around with my head cut off. For now, there has to be a balance and I have to ration my energy and strength.
Saturday was a perfect example of this. Chris scheduled this youth event called "Dinner for 10" where there are 2-3 adults and 6-7 youth, females at our house and males at another house. I took Maddie to dance, came home and started cleaning house and cooking for the evenings event. I had planned a nap, which is so vital to me surviving this kind of activity, but it didn't happen. In the midst, if I'm not completely knocked down with a migraine or how I feel, I don't realize I am over doing it as I bask in being able to have a taste of productivity and "living". But as soon as I slow down or sit down it all hits, and then I am down the next day completely. Is it worth it? Yes! But I have to be choosy in what its for and how often and I have felt a slight panic setting in because this time last year I ended up in bed all December. We believe its because about this time of year every weekend is booked with holiday festivities and things to do for them. It is so easy to have a full plate and before you know it you are running around with your head cut off. I think that's exactly what satan wants so that we don't have time for what really important, we lose where our focus should be (on God and not on Godly activities), and then we can't hear or feel God tug and pull and direct. It is so easy to do. Our society thrives on the hustle and bustle. Its almost looked upon culturally as unacceptable if you aren't running around with your head cut off. I get frustrated that I can't do what I want to do, and what I want to do is not "inappropriate" or ungodly or crazy.....teach piano, help teach Bible Drill, help with Kids Praise, attend Sunday School, attend women's conferences, go grocery shopping on a weekly basis, get the laundry done on a weekly basis (currently going on 4 weeks of being behind on this), keep my house picked up and fairly clean, teach my kiddos and do more then just the basics and thrive in "survival" mode but really get to do more activities with them, practice and play the piano regularly, and the list goes on. However, I am thankful I have Lyme that has forced me to slow down (okay, at times come to a halt) and therefore, I have been more available. Available to take a phone call from a friend. More available to pray for friends and family on specific things and as God brings them to mind. More available for snuggling with my girls. More available to have tickle fests with my girls. More available to hear and feel from God. More available to interact with people I don't know and listen to their cares. Somehow Lyme has made me more bold, and though maybe weaker for a time physically, it has made me stronger as a person. And the list goes on. There are blessings in inconveniences!

Still Fighting

noreply@blogger.com (Elizabeth Anne Saulnier) — Tue, 25 Oct 2011 23:00:00 +0000

Its been so long. I have blogged a couple times but just haven't posted them. I'm sitting here at infusion and for the first time in quite a while I feel moved to blog. Just not sure where to start. My type A person wants to begin where I left off but so much has happened it is overwhelming thinking about trying to "catch up". I'm also at a weird place right now mentally. The last two weeks of infusions has really worn on me. I also didn't feel my blogging was accomplishing anything positive so I would blog for my own record, but I received an email from a fellow Lymie that really encouraged me and inspired me that maybe I should blog again, not for family and friends but for other Lymies because its affirming to talk or read that someone is struggling with the similar things. I gave up keeping friends and family "updated" especially after these last 6 months when things got so crazy. It became apparent to Chris and me that if people really "wanted" to know, they asked. I have never been one to shove my disease down people's throats but if you ask I am glad to share. Unfortunately, a lot of times people ask just to make conversation or appear social and then they get more then they bargained for. So, we have kept pretty much to ourselves about what is going on. Unfortunately this can feel pretty lonely. But we have come to realize in the last year and a half with this disease and in fighting it that we have to surround ourselves with people that are going to support and love us whether they agree or understand. I thought I was crazy at first thinking this, ignoring my body's response to "negative" or even challenging relationships or interactions. Then, recently I began reading a book called "The Road to Immunity" and the author, Dr. Bock, says, "To get my patients healthy (and to keep them that way), I recommend a combination of traditional medical practices (for example, medications or surgery when absolutely necessary), natural healing therapies (including a sound diet, vitamins, nutrients, herbs, homeopathy, and acupuncture among others), and emotional support (such as stress management and psychotherapy)." Part of my stress management is limiting putting myself in position where I know it will be stressful. Dr. Bock goes on to say, "We can start by shielding it from unnecessary strain or damage and by providing it with the nutrients it needs: fresh air, clean water, healthful food, and love (yes, love is a nutrient)." This affirmed that I am not totally crazy in how I approach interactions and what situations I put myself in.
Love is a funny thing. Everyone has a different definition of Love. I choose to use Christ as my example. He loved the person, didn't always agree with what they did or the choices they made, but He loved them and cared for them, and He never gave up on them unless they blatantly denied God. The interesting thing is that every person Jesus came in contact with were fallible, imperfect, and He never gave up on them. Unfortunately, one thing Chris and I have learned is that trials of life can shrink the circle of people you thought you could rely on to a remanent. But we have to remember that Christ was perfect and people are fallible...so fallible. I believe that one of the many things God wanted to bring to my attention through this disease was that what I relied on here on earth would let me down and when would I begin to rely solely on Him, trust only Him, and look to Him for what I needed. I can't say I have fully accomplished this but I have gotten better. I will say that this disease and all we have been through with it has brought my immediate household closer.
This last March I began to feel a "switch", something positively different. I was on Zithromycin and Flagyl and many supplements. I felt I was a bit more functionable but at the same time other things starting going hay wire. I began losing weight, my hair was falling out by hand fulls, I was losing my hearing, and my vision in my right eye was getting progressively worse, to just name a few. I new these things weren't "normal" or good but I figured I was more functional so maybe it was all in my head just how bad it was.
In June, after having put up with "bucket head" symptom for a year and it had gotten so bad, I decided to see my ENT that I love and that has stood by me since 1999. This is when I found out I was losing hearing. He was very concerned and felt it was the Zithromycin and wanted me in to see my lyme doctor ASAP. We researched Zithromycin and did read where it can cause ototoxicity. We scheduled an appointment with the lyme doctor and had a battle plan of what antibiotics we would talk to her about switching to. We never got the chance. She saw the weight loss (at that time 117) and she flipped and pulled me completely off treatment and this is after she had always said she would never pull treatment in fear it would cause me to back slide. She sent me to a GI specialist. Tests were ran and they revealed that my esophagus was so inflamed she stated she didn't know how I was able to get water down. I was then at that point, taken off all oral meds. Within weeks of being off all oral medications my lyme symptoms began coming back. I emailed the lyme doctor and pleaded with her, not knowing how long it would take for the esophagus to heal (resulting in a new diet of no meat or dairy...only soft foods...I've lost count what number of diet this is), to revisit starting treatment back up, only parentarily (IV). She agreed and after being off of treatment for 3 weeks I started treatment back up in the infusion lab through IV, 3 times a week receiving Rocephin and also vitamin C for immune support since I couldn't take any of my supplements for immune support. I did notice a different in getting off of all the supplements. I do believe in the beginning they were helpful but towards this point they had become more toxic to the system (I was taking 15-20 pills a day...thus the esophagus). The digestive system was trashed and probably not absorbing much if at all what I was taking. Some of the medications, like my migraine preventative, are supposed to be slowly decreased and I cold turkey quit. I saw no side effects....again, probably because I wasn't absorbing the full doses.
The first day back on treatment it only took the nurse 2 sticks. The veins have been through a lot in the last 20+ months. However, the second day of treatment she stuck me 4 times and couldn't get a single vein. They would just blow. At this point, frustrated because I'm wanting my treatment, the nurse contacts the doctors office and goes to bat for me on a PIC line. In thinking through this, I have had a midline and a PIC (which did not go well at all). I had been down those roads. Since we didn't know how much longer I would be fighting Lyme, nor how long it would take the esophagus to heal, I emailed the doctor and pleaded my case for a PORT. I was told she never agrees to them via email so I had planned to be in her office the very next morning first thing. To my surprise she agreed.
This was all the week before I was scheduled to fly out to see my grandmother. So, I was hoping it could be done the next day, Friday, have the weekend to heal, and possibly fly out. Nope! I had to see a surgeon for consultation before it could even be scheduled. This consultation took all day Friday with more tests and the procedure was scheduled for Monday...the Monday before the Wednesday I was to fly out. The procedure, which is another whole blog in itself, went well, but being a surgical procedure where they implant a device in your chest that has a catheter that leads to the heart, has two incisions. I had my first treatment with it that day, and also saw my GI who ordered an MRI of my bile duct in which they refused to use the PORT for the dye.
It is difficult to put into words what May through now has been like. The above is just a sampling. It was always something we had to fight through, or another doctor to see. The summer was spent traveling from one doctor to the next. Things kept changing weekly, sometimes more then that. There's no way to capture it all on paper.
I rescheduled my flight because with the new PORT was more dependent on others and wasn't good for anything. A week made a big difference and with some assistance I was able to fly out to see my grandmother. I found it interesting that to get any kind of help at the airport I had to sit in a wheel chair. But I complied,...when you are in discomfort and unable to do things, sometimes you don't have a choice.
After about 4 weeks of treatment through the PORT my cd-57 went up to 55, the highest it has ever been (180 is our goal). I truely believe its because we are doing treatment through the PORT which goes straight to the heart and the vitamin C has also played a part. If you read up on vitamin C done intravaneously it is used for cancer patients to help with detoxing as well as other things (you won't find Lyme mentioned....some day you will). After the first 4 weeks, there was a week off of treatment and I went down hill. The little energy I had and functionality declined greatly. We went in and begged for another 4 weeks.
Two weeks ago we scheduled another appointment after being on treatment now for 8 weeks with the PORT to ask questions. I had this nagging feeling (aka God) that if we needed to do treatment five days a week for a month and then take two weeks off . The two weeks off was my idea just to appease the doctor who keeps threatening to take me off treatment to give the digestive system a break. Um, hello, why would I want to take a "break" when numbers are finally going in the right direction? Remember the last time she took me off treatment? My lyme symptoms came back and they continue to worsen with each day. So, we went in to do battle again. I also had questions and other "suggestions". I was so afraid I wouldn't remember them and think clearly and I was afraid to present my ideas because I didn't think she would go for them. I so dislike that I, the sick one, have to be the one on my toes and know what to ask or it feels nothing happens. The doctor came in and God took over. I had this clear mind accompanied by boldness and I remember my questions (Chris couldn't keep up with them on his phone) and just went "bam" "bam". When I mentioned doing treatment five days a week she shook her head no. I asked why we don't test the lyme test through iGenex, the most sensitive lab (I knew the answer but wanted to put it out there) and she said because insurance doesn't cover it but said she would run it this time through iGenex. I had also pointed out that we had always been doing at least two antibiotics and should we be doing two now. Her answer was no. Chris began to ask if we are doing everything possible and I mentioned that I was even willing to try Vancomycin, a medication I reacted to when I was in labor/delivery with Maddie (?) and have been labeled as allergic to, but its the best antibiotic in fighting Lyme. I, being a good lawyer, pleaded my case that I'm under supervision in the infusion lab and if anything happened I was in good hands. She agreed! Ha! So, we leave to go do an infusion using the Vancomycin. I sent word out to my prayer warriors to pray that I would tolerate it. We get to the infusion lab and come to find out she not only put Vancomycin with vitamin C, but left on the Rocephin and prescribed it five days a week. Unbelievable! Everything I asked/addressed she did.
I got through 3/4 the bag of vancomycin and began to itch like crazy. I was so happy that I got through that much. I was given benedryl through my PORT (nasty!!!) and had to stop the infusion. Within about 10 minutes I was in the public bathroom sick to my stomach and doubled over for over an hour before I could get up and walk out. Afraid it was the vancomycin I didn't tell anyone and prayed the whole time that no one would walk in and find me doubled over on the floor. I knew they would call 911 and my vancomycin would be taken away. I prayed and prayed and got through it.
So, for the last two weeks I have come every day to do my infusion which takes about 4 hours. The last two weeks the girls would come with me and we would do school here at infusion most days or I would come in the afternoon with Becka and she would finish school here. Last Friday, I fell apart. I think the two weeks of dragging everything and everyone to infusion and sitting here for 4 hours trying to do school wore on me. After my infusions I am zapped!!
Yesterday, I came by myself (first time) while Chris stayed at home and did school with the girls to try to relieve the stress and when I woke up toward the end of infusion my IV was dripping super fast and I was itching. I was given benedryl again through my PORT and again I ended up sick to my stomach and doubled over for an hour. It was as bad as the first time but still pretty bad. The other option is a drug called Decatron which is steroidal which is not good for Lyme.
After 8 weeks of doing treatment through the PORT my cd-57 is up to 142. We are still waiting to hear from iGenex. So much will be determined off of that test. If there are NO bands present on the iGenex test, this will probably be my last month of antibiotics. If there are bands present then we will probably continue treatment. The only concern I have is that my cd-57 is up and if the iGenex comes back completely negative and we still have all the lyme symptoms. I have felt that I have slowly degressed back to where I was before we started treatment.
My computer is dying so I need to stop. I hope for my fellow Lymies this is helpful in some proportion. I have learned so much just in talking with other Lyme patients here in the infusion lab. I now know more people with Lyme then I do with cancer. It blows me away.

God is Gracious

noreply@blogger.com (Elizabeth Anne Saulnier) — Sun, 12 Jun 2011 20:41:00 +0000

Life with God is such a crazy ride. I am continually blown away by what He does and then I am shocked that I am amazed. I knew in my heart He could do it but to witness it, and to be allowed to be involved is something different. Anyway, He still amazes me.

I think the last time I posted I mentioned a switch I had felt, a change. Somewhere around my birthday in May, I had a week of headaches/migraines and the after that I no longer felt the switch or change. The old mono feeling was back and this really bummed me out. Sometimes I think I'm allergic to end of semesters or vacation times (summer, spring break, Christmas break). I fight the "it doesn't seem fair" attitude because I so look forward to these breaks to spend with my girls and the last thing I want is to spend them in bed like I did in December. Can you tell December left a bad taste in my mouth? Out of this entire journey it has been the worst month for me mentally, spiritually and physically.

What I began to notice with the headaches was that they weren't responding to meds so I felt they had to be more due to toxicity. About this time I had begun to get an appetite back from months of having a strong aversion to food so I was eating what ever sounded good just to get food in my body. But the wrong food increases toxicity. So, I began to focus more on right foods to decrease the toxicity and the headaches slowly decreased. The other thing I think that is knocking me down is the heat. My girls are on a swim team and we have practice 4 days a week and even though I would sit in the shade I think the heat was just zapping me, especially at the first swim meet. Any amount in the sun just zaps me completely. I have also been "running around" a little more then usual, trying not to be sedentary because of the heart and because I want to be doing things but it also zaps me and when I get going I get run down. There has got to be a happy medium somewhere but I haven't found it. Then when you put in the mix my bucket head symptom, I go nuts.

This last week Chris was out of town at youth camp. For the first time in 18 month of treatment he didn't arrange "babysitters" for me. I am always nervous when he goes out of town. Its a sense of not being able to handle everything on so many levels. I began praying about it a couple weeks before he left. I don't like asking for help. If someone offers I will gladly take it but I'm so tired of asking for help. I want to much to be a functioning mommy/wife. I see so much of things that need to be done and that I want to do around the house but just don't have the strength and stamina to do them and it drives me crazy lately. I'm better off really sick in bed because then I don't care but when I'm this middle stuff where I'm well enough to be up but not well enough to fully function its like a tease.

A couple days before Chris left a friend of mine offered to take the girls to swim practice this week for me so I wouldn't have to sit out in the heat. At first I did not like the idea because I love being there with my girls, for my girls, watching them. I want to be there for them as much as possible knowing there will be days I won't feel well (like the week of headaches/migraines) and can't be there. But the more I thought about it the more I knew it was the smart thing to do. I also struggle with allowing someone else to go out of there way to help me...was it guilt? I don't know...it was uncomfortable is all I know. But the more I thought about it the more I knew it was the best thing to do. With Chris gone, I needed to reserve energy, and with him gone I would have no relief or break or reprieve. So, reluctantly, I said yes and I hated staying home and missing their swim practice and not getting to watch them swim but knew it was best for my health and knew it would give me more strength for their swim meet later in the week.

God also provided another friend to take the girls to the library one day. Again, I felt guilty but allowed the blessing and tried to store the energy and but all the while I sat at home doing tail spins. I like my chickens at home with me. I'm not much use at home alone either. I think too much and I can't dive in to any of the projects that have been yelling my name for over 18 months. That would defeat that whole, "save your energy" idea. God also provided another person to bring us a meal Friday so all I had to do was heat it up after getting home late with the girls after Becka's gymnastics. As the end of the week came I was so thankful for what God allowed for me. He allowed me to feel well enough this week that I wasn't in bed, I wasn't herxing this week. He allowed me to enjoy my girls. We made cookies together for them share at the swim meet (its been so long since we made cookies together). They helped me a lot. We got into a rhythm where Maddie emptied the silverware of the dishwasher and I did the rest while Becka washed dishes (that kid loves to wash dishes...she hates to put anything in the dishwasher). I didn't do great this week as there was one day I forgot to eat because I was so busy (the day we made cookies and I had to pack dinners for the swim meet) and I forgot two days of my shot, but God allowed me to be more functional this week while Chris was gone then I have been in a long time. I felt crummy but functional. I can handle crummy most of the time if I can just function. I get a little crabby by the end of the day, but I can handle crummy if I can function.

Before Chris left he had a female leader back out and I was trying so hard to figure out how I could go to camp. Even a couple weeks before that I was trying to figure out how I could go. I can drive a van. I can lead a bible study.....but thats about it. The kids need more then that. It stinks! I want to be more then that. This time last year we said I would go this summer and here we are and I'm not going and we are saying, "next year". Ugh. Chris and I laughed because I can barely get ready for church without getting bucket head and if allowed to persist without lying down it gets painful in the ears. It is so frustrating to look normal and not be.

I look back at this week and see God's hand and how he sustained me but its like it ended at midnight last night because I get up this morning to get the girls and I ready for church and I'm falling apart left and right. I step on the scale to find I've lost two more pounds. I'm 6 pounds less then the last time the doctor saw me and she said she didn't want me losing any more. I step in the shower and I'm scare out of my whazoo at a brown clump on the floor. Its a wad big wad of hair. I had noticed in the last week or so that my hair was falling out again. It seemed like I was filling a brush each morning. This morning in the shower I had locks of hair just coming out. Now I know why the wad of hair in the shower. This didn't help. In the middle of the shower I just emotionally just bend over and fall apart as if I had been pretending all week, or holding my breath all week and now reality was hitting or someone hit me on my back and a big gust of air came in only I couldn't breathe. What was going on? Where was God's sustenance this morning? I would think of all mornings, He would provide this morning so I could get to church and worship? Yet, I know I'm under attack. I'm emotionally a wreck. But as long as I am physically feeling well enough, I am going to church. I may ball off and on and be an emotional mess, but I am going to church. People at church already know I'm weird. But today has just been one of those days where everything has culminated together where I just feel isolated. Chris is in his own world, off saving the world, as I put it. and I want so much to be a part of it, to serve with him and I'm not. Its not where God has me and I'm really struggling with that right now. I feel stuck in my four walls. Again, at church I have well meaning people say, "you look great" and especially after a morning like this morning its all I can do to not just scream! I guess I should be thankful I look great (thats God shining through me because I'm happy to be in His house and to be around people not because I am whole and healthy) but its difficult to be thankful for something you don't believe.

I guess there is this raging unsettledness. I wouldn't trade Lyme in for the world. Its ugly, its been mean (that's putting nicely), it has stolen from me,....in all better terms, it wasn't my plan. But through it I have a closer relationship with God, I have grown as a person, I see some things clearer and don't want to go back to some things before treatment days, and my family has grown together in so many ways. Yes, we have struggled too, but I think we have grown more and I'll take that. I want to be content where God has me, I really do. But the human side still itches and yearns for her plan and right now just itches to get out there and be involved. I simply want to function as a wife, mom and woman of my church and don't feel that is too much to ask of God. I have a heart for girls ministry and to serve with my husband. I have a desire to go beyond pew warmer on Sunday mornings. But I also know my God knows me better then I know me and I know He has a plan and He is still training me to follow His plan and not my own. I feel like a race horse in the stall waiting for the door to fly open so I can run the race with God as my jockey. I'm antsy. I'm anxious. I know there is a race. The race of my life. I know who is in control. But dad gommit...when will they open the gate and let me go! Yup! That's about the best way I can sum it up.

Who Is That Woman?

noreply@blogger.com (Elizabeth Anne Saulnier) — Wed, 18 May 2011 03:18:00 +0000

So today we had pictures taken for a pictoral directory for our church. Wouldn't you know it I have been down since Saturday afternoon with what is probably a herx. Started not feeling well Friday but it really kicked into gear Saturday and I just kept pushing it not wanting to go down. Yesterday had an appointment with the cardiologist and so I pushed it again yesterday when I really should have been down. Its the headaches and nausea which is usually part of a herx and I'm hoping its a herx and not a December repeat. I'm a bit nervous about that. We backed off of the Topamax that helps prevent the headaches in hopes of gaining some weight but if this winds up not being a herx a dive downward then we will have to go back up on the Topamax and I'm afraid the appetite I just so recently gained back will go away. Its such a vicious cycle and feels like such a delicate balance.
So, we have these pictures scheduled for today. One thing we have learned with Lyme, especially in the last 16 months of treatment is not to schedule things because we don't know from day to day how I will feel. But some things can't be avoided altogether. Today was a killer and I took migraine med on top of migraine med trying to make it, trying to fight and push my way through. If there is something I have also learned to do thanks to Lyme, its fight and push through....sometimes to my detriment though. I was laying in bed this morning thinking, "all you have to do is show up, take a few shots and then come back to bed,"...and then I realized "shots" = flashes...migraines worst enemy. I did what I do best and fought my way through it. But I wasn't prepared for what I saw....or who I saw.
I dressed our family up in the outfits we wore for a special occasion this last December (I felt crummy then too, but I think I looked ten times better) when we took Madilyn to the nutcracker for her birthday. I don't have much that fits anymore and I barely got by wearing this today. I would have rather put the family in something springy and colorful but I don't have anything that fits....literally. Some would say they would love to have this problem (I've heard it already) but I beg to differ. Though I've been tempted to try on the wedding dress to see if I'm that small or smaller, and have enjoyed seeing the waist line shrink, its not a nice shrink and when you go from clothes fitting to nothing in the closet, not even underwear (sorry for the personal) fitting it becomes a challenge, and it happened under 6 months. Now, as much as I would like to keep most of it off, I don't know what will happen so I'm not about to go out and by a whole new closet complete with the essentials of clothes, only for Lyme to throw me another loop and I blow up the other direction.
So I had us dressed in clothes that had a special meaning, so I thought, though they were wintery, though dressy, but I didn't feel well at all. Lesson #1: Don't have pictures taken when you have a splitting headache and have taken a ton of migraine medication just to help you function enough to get to the photo shoot.
The other thing, besides clothes and headaches I was battling with was my hair. Since December my hair has taken on a new attitude of its own. It literally looks to me as if someone took a frying pan and fried my hair. To add to matters I have had some kind of reaction to something since March and have fought what appears to be acne all over my head which has moved down my neck and on to my back but it itches and the more I itch the oilier my scalp gets. So I have oily fried hair that no matter how hard I try to straighten it bunches up and since it falls out its thin on the ends. Its just a wreck. Its not my hair.
I tried to not let any of this discourage me going into this appointment today. People, including my husband, said how beautiful I looked but I didn't feel "beautiful" one iota but I tried to let their compliments sink in and replace what I felt.
It wasn't until we looked at the proofs that I really was shocked. I was staring at a woman I really didn't recognize at all. I didn't like what I saw. I didn't think she fit with the man or the two girls. She didn't look like Chris' wife and she sure didn't look like those girls mother. It was an awful feeling. I just didn't recognize her at all. Normally, you find one pose or picture you like but this woman just didn't belong at all.
I really wanted to buy a tri picture with the husband and wife in the middle and a picture of each daughter on each side. We went through the process of picking through the pictures. There was a gorgeous picture of my husband and one of each of my beautiful girls that showed their personalities. But I couldn't get past any picture with the woman. I got thinking about the tri picture and thought, "every time I look at that picture I'm going to remember this day and this time in our lives" and I'm not sure I want to memorialize it with that much money and in this way. The man pushed for the sale and when I explained he said I should look at it from a different way that when I look at the picture I should think of all that God has brought me through. I have thought of that all afternoon and have wondered if I am too negative again. But I explained to him in response that I would rather spend that kind of money on a photo shoot after I am well, one that I can enjoy and have fun with family as a celebratory photo shoot and hang that on the wall to show what God has done then to have today hanging on my wall. I don't want that strange woman in my house, on my wall, standing with my husband and my children....though I know she is day to day....I know some day she will be kicked out and the real Elizabeth will step forward and will regain her role as wife and mom in this house.
We did get a free 8X10 of the family and that will be all we need to remember this time in our lives. To look at it will be haunting enough. I look forward to the day I can replace or accompany it with the "VICTORY" picture.
For those that don't know, which is most if you don't talk to us on a daily basis, I walked out of our last Lyme appointment more encouraged then I ever have. For the first time I have a peace about "if" I will go into remission where up until now I questioned it....it felt out of grasp. The question now is "when" and I try not to hang on that for only God knows when. In talking to the Lyme doctor she emphasized the length of treatment which basically told me to hang in there, hold on. She also made the comment that she felt Lyme was more difficult to treat then Cancer and HIV. For the first time I felt affirmed in my frustrations. She did point out that our last two Lyme tests both had positive bands but that the bands were different on both tests showing that different antibodies were being exposed. This was encouraging. She ran the usual tests...sort of. The Lyme test this month came back with no bands on top and one band on bottom, and for some reason the CD-57 test was not run. I think this was an oversight on someones part and for some reason I was okay with it. She did test ATP and it was 48 which is the highest it has been. It was last in the 20's. I took this as encouragement and progress. We don't see her again until mid July and tests will be done again then. Though progress is not leaps and bounds, its still progress and as long as we are making some type of progress I am encouraged. The body is tired and weak and the mind is weary but the spirit is strong and I will continue to fight. I've got to so I can kick that woman out of the picture and regain my position, my role in my family :-)

Going to be Random

noreply@blogger.com (Elizabeth Anne Saulnier) — Sun, 17 Apr 2011 17:24:00 +0000

am laying here unable to sleep, wanting to be in church but the body is not cooperating. After a night of little sleep and after taking something this morning in hopes to get some sleep only to find my self wide awake but groggy I decided to put thoughts down in the blog. Due to the lack of sleep over the last several months and the sleep aid in the last couple hours I'm sure my thoughts will be random but never the less, still my thoughts.

The ever eluding sleep thing is really getting to me. We have been given four different sleep aids to try to get me to sleep at night and yet sleep eludes me. For example, last night I felt the effects of the sleep aid, sure that I would crash when I put my head to the pillow and yet as soon as the my head hit the pillow my eyes are shot wide open. I try to lay as still as possible in hopes the body will slip into sleep. I pray hoping I will slip into sleep as I pray but I find I run out of things to pray for...literally. I try just laying there listening to my heart beat in my pillow. I try all kinds of things and before I know it several hours have passed. Last night I looked at the clock and it was 2 o'clock and I was still wide awake. Some time after that I drifted into a sleep where I fall into a half sleep and then wake up, drift wake up, drift wake up, and this continues for the rest of the night and I toss and turn. I think I might have finally fallen asleep around the time Chris' alarm went off. There is no deep sleep. Its all superficial. I can't think of the last time I had a great night's sleep....before January.

At this point in our journey I am not only physically drained but I am emotionally drained. I feel I live each day in survival mode, ending each day thanking God I made it through another day without disastrous events. I still have days that are rough and days that are managable. I believe we have had 4 herxes since we switched to zithromycin in January...one being this last week.

The last several week have been interesting because I have had random things reappear or happen. My head started itching a couple weeks ago so bad I had Chris check for lice. Natural health doctor says its the over build up of yeast in the body. Not to long after the head started itching I broke out in a rash that last for almost a week. It was between the knees up to the neck with some spots on the arms. Clueless as to what sparked that. Then I had, with what I think was the latestes herx, a reappearance of old symptoms, severe calf cramping, shoulder muscles tightness, swollen lymph nodes, hips stiffness, back aching, headaches, hands hurting, nausea, etc. All this is goes back to before treatment began which I find interesting, especially since we have had 3 bands reappear on our Lyme test. I'm hoping all this just means the bacteria is coming the to surface and is being killed. These are my hopes.

Other weird things are a bruised toe nail for no reason. Natural health doctor says its just super sensitive. Lovely. Welcome to my body where anything can happen and its one thing after another. There is always something nagging at me...not one thing, usually more.

The heart appears to be much happier on the 10 mg of Coreg now that we have backed down from 30 mg. The chest tightness and constant trying to get in a deep breath of air, and getting out breath doing simple tasks has gotten better and the blood pressure has returned back to my normal low (97 over 57) and not the super low (81 over 47). I still have bucket head that gets annoying anytime I am up and moving around which I am supposed to be doing more of to recondition the heart. Basically, it feels like I'm breathing out my ears and I have feed back in my ears. I can't tell how loud I'm talking and I have difficulty understanding others. Natural Healthy doctor says its related to blood pressure and to take it as a sign to stop. Hmmmm, doesn't take much to get bucket head. I get bucket head getting ready for church. Why, just taking a shower I get bucket head. Basically she said that the heart's structure is in good shape but its just "pooped" out.

My last post I was at peace, layed back, chilled. And somewhere over a weekend or night I lost that peacefulness. I seem to go in waves of this and I'm trying to figure out why it happens because I would much rather live in the peacefulness then in the state I'm in right now which is more cranky...I'm sure there is another word for it.

It happened around the day I had the CAT scan for the heart. I had never felt so alone in my life that day while having that test done. Chris was out of town. In some ways I began resenting him for being out of town. I felt like he is able to just go on with his life, saving the world and I am left behind. I felt I had no advocate. I just felt extremely alone. I felt other people had people to take care of them but that I didn't and that I needed someone but that I needed more then hour here and an hour there. Maybe I needed more then anyone was capable of giving. The whole purpose of this test was to keep the heart beat down and they kept asking me if I had been given a prescription to take before the test. Um, no. I tried not to get upset that someone messed up and just kept reminded myself that things happen for a reason. Then they handed me a clip board and while two nurses stood in front of me I filled out questions about the monthly cycle. Without my phone and without my husband (whose my memory) I was at a loss. I didn't know what the date was, couldn't remember the month and was so scared they would declare me incompetent. I asked what the date was but then couldn't subtract my cycle day from the date. So, I took a stab in the dark and just guessed at the date of my last cycle. The next thing I know I'm being asked if I can be seen in private. I immediately felt like I was in trouble. They explained something to me that my lyme brain understood as they thought I was late and possibly pregnant so I tried to explain that I don't process things well and that I'm not late but that I am 13 days into the cycle. They then explained they understood that and said they couldn't do the test because I couldn't be pregnant. Frustrated I explained that couldn't be for other reasons. They laughed and said thats what they needed to know and for me to put that on the form. Frustrated I wrote it on the form. They had to call the cardiologist to call in this prescription I was supposed to have to lower my heart rate to take this test. As I sat in the room waiting for all this scripture came to mind but then I would get all teary eyed. I tried to pray and I would get all teary eyed. I would think of my girls and I would get all teary eyed. Great! There was nothing I could think of that would help. I just felt desperately alone. And I think it was here that the walls came up and the peace dissolved away.

I have a friend, one of few who has stuck by me through this journey and has not been sifted through the sifter of the illness. Occasionally she writes me a message...its more like a small letter on facebook, and it does my soul so much good. I told her it like a window for me to look out and it gives me a glimpse of what is going on outside the four walls I live in. Her letters do so much to lift my spirits. I know she thinks she is just "rambling" on but I love it. I am just extremely lonely right now. I am beyond dry in adult fellowship, spiritual fellowship. I yearn so badly to be involved in things at church but the body doesn't allow. I'm good to just teach my girls school and get them to their one activity each and I barely do that. I don't cook, clean, or do anything else.

If I could find a black whole to crawl into I would, one where I could just listen to my praise music, and read my bible and talk to God and just hang with Him till this whole Lyme thing was done. I find comfort knowing that God won't get sifted through the sifter of illness as others have. It is painful to watch as friends have fallen away as if unable to handle a long illness. A long illness will sift who your true friends are and it has been painful to see some who I thought I could count on fall through. But my God cannot be sifted. I feel I am hanging on by finger nails hoping we beat this Lyme before all the meds beat the body. Either way, I know God will see me through. I just wish I could do alone in private with Him and not have to see the effects it has on those around me, especially those I live with. I am physically and mentally exhausted. Anything I need, anything I have comes from Him. I have nothing on my own. Survival mode. One day at a time. Hoping for a change

Blessings

noreply@blogger.com (Elizabeth Anne Saulnier) — Mon, 07 Mar 2011 01:01:00 +0000

For the first time in over three months I feel led to blog. A lot has happened in three months. They have been the toughest months in this journey yet and yet I wouldn't give them up for all the gold in the world. It would take me pages and pages to catch the blog up on the last 3 months on exactly what has happened and my old type A self really wants to but my new self is what is heavy right now and is what has led me to write tonight.

I don't know where to begin and probably won't make sense to anyone but want so badly to capture what is going on inside. I don't want to lose any of it. I forget most things. I don't remember most things. I see names on facebook and know I knew them in high school but thats it. I get things so mixed up all the time and don't remember day to day things. We have a saying in our house, "you've been Lymed". But what I'm experiencing I so don't want to forget or let go or lose. Its been something going on for a while but appears to be working in over drive today.

Lyme has caused my life to come to a halt. It was gradual at first and I fought it so badly, especially as we didn't get answers and doctor after doctor told us I was "normal" (no one is normal, by the way) and so I went on with life. The last 3 months were another notch in the slowing down meter. Didn't think it could happen but it did and I know now it could happen some more. Each time the notch is turned down God shows me something new. I'm not making sense and its not coming out like it is in my head. Basically, when you jump, or are pushed off, of the merry-go-round of life some things are clearer, including the voice of God. The world looks different off of the merry-go-round then when you are on it. Without going into it, I personally prefer the slower life. I am at the mercies of my savior for everything, everything. There isn't words to describe it really. I dropped the girls off at church tonight and came home and there is an internal struggle because there is just enough strength to do something but no near enough to do anything great (i.e. laundry, clean house, anything that needs to be done). So, I stand in the middle of the house and wonder what to do. I don't like to just do something to do just do something not that I can and get to do a whole lot anyway. I took Becka to gymnastics Friday for the first time in weeks and have 3 1/2 hours to sit there. My mind (the old self) immediately goes to "what can I get done while I'm sitting there"....Ms. Efficiency. I start running through things in my head like organize documents for taxes, grade papers for the girls schooling, etc...things in my mind that "need" to be done, right? But inside there is a nudge that says, "no". What? But they need to be done and for once in the last 3 months I have a smidgen of strength. Why not? But I have learned to listen to that nudge. It means its my plan, not His. Tonight was no different. I look to do something. Don't we all? Always looking to fill our time with something. Never just being still. Thats the thing....I think being busy is a disease. But the good news is there is a cure. The sad news is, if you don't take it, the alternative may not be curable.

I have felt extremely useless especially in the last 3 months. Lump on the log has never had as much meaning as it has in these months. But I believe these have been months of extreme make over. When you get off, or are pushed off, the merry-go-round, its amazing what your eyes are open to when the spinning stops. You can look around you and the colors and people around you are no longer blurred. Its incredible and you wonder how you ever got on the merry-go-round to begin with.

I was in the cardiologists office because I have had difficulty breathing since mid January and mid February we were told by doctor that she thought we were "slipping in and out of heart failure". So, we saw a cardiologist who orders all these tests. I was a bit frustrated to have to see yet another doctor, go through tests, dread the words "normal" leaving us under a lyme green umbrella with the rain pouring all around us. So, here I am sitting in this office waiting for a chemical stress test. There were 4 clients and 4 professionals. One gentlemen was sitting to my right and I hadn't looked right at him but just heard and seen him through my peripheral and my stereotypes had kicked in based on what he allowed everyone to hear and what my peripherals saw. We got to the end of the tests and it was just he and I in the waiting room and he spoke to me, struggling with what had been injected into us. I looked up and now I saw this man. I shared I was struggling with it as well. We both shared we had done the treadmill in the past and would prefer to do it in the future. He shared he did this every year. Something in me prodded to ask why but I felt it was nosey but I asked him why had a screening each year and he shared that he had a heart attack four years ago...the anniversary of it being the next day. I was amazed at how this man, older then me, was just talking to me. Not bragging, not whiny, not complaining, just sharing, as if ...friends maybe. It was incredible. I shared about a man in our church who just found out about his carotic arteries. He then kept talking saying he really didn't understand why he was blessed to still be here today. He paused and then he said maybe did....that it was to help his wife who had died four months ago. At the mention of this I lost all words...not that I had many to begin with. I am not a social girl. I usually end up putting my foot in my mouth. It definitely not a gift. I said I was sorry to hear that. He said she fought a good fight of cancer. He said the funny thing was he wouldn't be here if it weren't for her that she is the reason he survived the heart attack. I'm in aw at this moment. The strength in this man's voice. I can't place the words to describe how he talked. At this time the tech came to get me for my final images which I thought was bad timing.....here this man shares his heart with me (ironic...we are there for heart tests) and then I have to get up and go. I laid in the chair with the machine whirring around me just staring up at the ceiling praying for this man. I didn't know his name at the time, and didn't know if he knew God. I didn't even know what to pray so I prayed for help to know what to pray. I still don't know it is about this man but he touched my heart. I walked out trying to contain the overflow filling my eyes and he opened the door of the waiting room for me. I was speechless except for "thank you" and "best wishes".....told you I'm not gifted with words. I walked out and lost it. I did learn his name later and have prayed and cried over this man. I was talking with one of the ladies in the doctors office who said, "there's always someone worse off then you." and it caught me, snapped me, and I replied boldly which is not like me, "its not that someone has it worse off then you but that everyone has something going on and to that person its a big deal. There's not a single person in this world that doesn't have something going, dealing with something." Why does it always have to be a competition. To say someone else has it worse is to say that what God is doing in your life is nulled, insignificant? What are you then saying about God?

I was sitting in the foyer of the hospital waiting for Chris and the girls to pick me up from that morning from doing this test and I was just watching people. I then remembered a video someone posted on facebook. Its called the Paradigm Shift (http://www.youtube.com/watch?v=JlRK1vqcuvg). This is one of the blessings of a slower life. It has allowed me to have a conversation with a man in the heart doctors office. The old me still on the merry-go-round would probably not have had that conversation. My body language and words would have been such that would not have allowed that man in because my world was spinning out of control...I would have been too busy trying to do too many things to feel important and productive and accomplishing my plan.

I am sick, the sickest I have ever been in my life. I have been kicked off the merry-go-round and I am so glad. I don't want to get back on. I may not be able to do my own laundry or keep my own house or do most of the things the world normally does but I can still pray and I can still listen. Its all I have time for.

I got to go to church this morning. I was sitting there during communion, holding the bread. I like to pray during the each piece while its going around. I have never felt what I did today. I've always felt my prayers during communion were my words just filling up that time. Don't get me wrong, they were sincere words but just empty? This morning was filled with life. Again, I wish I could do this justice with words.. but...I found myself thanking God for every drop of oxygen given to me to make it to church and every bit of strength it took to make it to church, and for every ounce of encouragement in every form it came in (music, children, etc) and for the cooperation of my children....all given to me by Him. Then we were given the cup. I'm holding the cup and I am reminded that without Christ's blood that all those things, each breath of oxygen, strength, encouragement, cooperation...all of it wouldn't be available, possible....that would equal nothing but one big pit of despair. I am so thankful that I can at any given second go to my heavenly Father for strength, to cry out, to cling to, to laugh, to cry on, to lean on, for my next breath, for the plan of action, for a friend, for love, for a hug, for anything I need. I don't have to go through anything to get to Him. He is always with me, right here. He may not "kicked me off of the merry-go-round" but I believe He is saving me from myself through it. He is doing an extreme make over through it. Therefore I choose the slow life. I will cherish the slow life. I got the longest snuggle time with my youngest yesterday after nap. It wouldn't have happened without Lyme. I would have been off trying to knock something else off my list. I like being available to pray for people and listen and snuggle with my family. It hasn't been easy and its not going to be. But I'll take the blessings of the Lyme and the extreme make over and what God is doing with it over Him leaving me to what I was.

All this and more and then I heard this song and it put it into words for me. This is my hearts and souls cry and song. The last 3 months have been the roughest but at the same time they have been an eye opener. I think my heart is bigger (maybe thats why its struggling :-) ) and my eyes are more open (when they aren't asleep :-) ) and my family continues to grow closer together and I continue to grow closer vertically with my Father. Not all bad, right? Check out this song. Its where I'm at.

http://www.youtube.com/watch?v=yZRg-SEQJSE

noreply@blogger.com (Elizabeth Anne Saulnier) — Tue, 21 Dec 2010 03:48:00 +0000

I am sitting here in bed working on stuff for the girls' schooling for next semester....always trying to get ahead but somehow always feel behind. I'm not done with the little "project" I was working on but there was a nagging voice to blog. I have avoided blogging in the last couple weeks, more months. Partly because I knew it wouldn't be positive because I am struggling so badly mentally. Part of it is I don't feel it serves the same purpose it once did, informing people. In the last couple months I have felt so alone. I don't have a midline in my arm limiting my actions but I feel just as bad today as I did this time last year. But I don't feel the prayers, the presence of other peoples hopes. I feel very much alone other than the other three people that live in the same house as I do. We have found ourselves clinging to each other more in the last several months then ever before. I know this is part of God's plan through all this. Yet, I yearn to free them of the daily pain, inconvenience and lack of a wife and mother they have to experience. I think a lot, probably too much, but I'm one of those type A people that analyzes everything (my daddy in me) and by golly if I can figure out why this or that then I can avoid this or that. Unfortunately, its not that easy, another thing not easy for a type A person who looks for things to be black and white, consistent, patterns, etc. There is comfort, for most people, in routine, habit, consistency. So, this type A person is really struggling with this Lyme disease that is anything but black and white, routine, consistent.

We have past the year mark of when it was diagnosed. We are approaching the date of being on antibiotics for a year. This blows my mind that I have been on most of my meds for a year. Feeling the way I do I question whether we are gaining any ground and yet the tests show some progress, its just really slow, which is typical for Chronic Lyme. Its just really wearing on me physically and mentally. I am split down the middle, feeling thankful for Lyme because of the things God has shown me but feeling just really tired of it all.

The best way I can put it is I have nothing, absolutely nothing to offer anyone anywhere, even those in my household. The best way I can try to explain is to picture me out in the desert laying on the hot, dry, ground just trying to survive. I just try to make it through each day. I no longer can "help" myself. I need taking care of, and this disgusts me. I asked myself, "what do you really need?" and I felt the response was unrealistic, too much, too high an expectation of anyone. I am a kid yearning for a mom to take care of me till I am well or a yearning for a friend to come by my side and lift me up and help me back to my feet. So here I lay between this "need" feeling and being at this place in my life and not liking it and feeling that the answer is unreasonable. So, I'm in survival mode. I do what I can to get through each day but its having effects on my family that I don't like. I am starving and need nourishment physically, mentally and spiritually and I am unable to "feed" myself anymore.

Since our house has been decorated for Christmas I have yearned to "host" or entertain. It is definitely something Chris and I love to do. Last weekend we had the youth over Friday night for their Christmas party and then the Youth Volunteers over Saturday night for their Christmas party. I knew it was really pushing it. I saw God provide in ways such as the lady that was cleaning our house (a blessing through a lady at church) came one more time for free one last week before these two parties. I could have never have done it myself. Its difficult to explain because on one hand it was very taxing on me physically, may be the reason I have been in bed most of this last week, and yet mentally it was invigorating to serve people in this way when I haven't been able to do anything for anyone in the last year. Sure enough, come Monday I had the "been ran over by an eighteen wheeler 10 times" feeling. The throat hurts, the lymph nodes swell and hurt, the joints stiffen and hurt...what most people would say, "I'm getting sick". but I can't put into words how alive I felt while serving others and hearing the youth throw powdered donuts at each other in the front yard. I had two people thank me for opening our home to the youth and each time it hit me in a weird way. I thought, "is there another way?" I can't imagine not having them over. In fact, I wish we had them over more and hate that I can't serve Chris more in this way.

While trying to get ready Saturday night for the Youth Volunteer's dinner I realized something. Chris and I were butting heads, just not on the same page. And about half way through the morning after he was pretty frustrated with me and me with him I realized why. Through our 12+ years of marriage he has learned and gotten used to a wife that was efficient and organized. Bless his heart. So, here he is getting something out and thinking he is helping me by being several steps ahead and I'm standing there frustrated because I can't figure out what the heck he is doing. He was on one recipe and my mind was stuck on the last one I had looked at, unable to think or focus on anything else. Again, its difficult to explain. Just know that I don't function like I used to and we are all having to adjust to this. After years of me one way, Chris had gottent used to that, and now I'm not like that anymore. I am so much slower and can't organize much of anything anymore and I'm definitely not efficient in anything I do. Its frustrating for all of us. Those on the outside of our walls do not see this. The community and church where we live has only seen the "sick" me and do not know the Ms. Efficient and Organized. I don't think she moved with us to Simonton. We must have left her in Cypress (sorry, my attempt at humor).

I do not like rationing my energy, particularly at Christmas time. I've been yearning to hear Christmas music, experience Christmas music, sing Christmas music. I wish I could just play Christmas music and get lost in it. I took the girls to a Christmas program last Sunday night at the church Chris and I got married in (yes, the Sunday after both parties. I felt aweful but by golly I was going to go to at least one Christmas concert). The whole time, trip there, concert and drive back, really revealed just how different things are. I got very anxious driving there...it was dark and I don't see well anymore when its dark. I was nervous that I didn't remember how to get there. God guided the car and made a parking spot for us where I didn't have to walk too much. The program though was an hour and a half...ugh. I get nervous that I won't be able to handle the girls and that I will get frustrated easily with them and that I will loose my cool with them and say something I said I would never say to my children. I have lost all confidence in myself due to the lack of energy, strength, memory, physical stamina, etc. The girls did well and hung in there. I was glad to expose them to the music. All the way home I was questioning whether I should have taken us after really seeing how I have deteriated from a strong confident person to a weak incompetent person. Its not a pretty realization.

I've asked myself about asking for help but I am so tired of asking for help. We've been asking for help for a year. In trying to work out my needs and feelings I realized that what I needed was a mom or friend to see me through this. It is so difficult because on the outside I look "normal". Maddie asked me the other day what normal is. Becka learned in school that a "normal" body temperature of a healthy person (so glad they clarified that) is 98.6. The girls wanted to take their temperatures and mine. I was 97.9 (I run low) and Becka was 98.0 and Maddie was 98.6. So, she wanted to know what "normal" is. I laughed inside because I don't believe there is "normal" anywhere. I found myself saying, "normal is what most people do, say, are....the average...that's all".

We saw a new doctor last week. She is an MD and a natural health doctor (if I have my information correct). She is about an hour and a half away. We took the whole family (it gets tiring trying to find people to watch the girls all the time. I fear wearing out what help we have) and the drive was breath taking this time of year. Chris got to go down memory lane a little (literally) and it was neat to hear him share of those childhood memories. We liked this doctor. I brought my entire typed out history (it gets old sharing 10-15 years of history, especially when I don't remember most of it). She is the first doctor to actually sit there in front of us and read it page by page and then actually approach some of what she read. I wasn't sure at first if she was going to say, "I don't really believe you have Lyme" based off her body language while reading. I have to say I am "gun shy" about seeing new doctors because I fear what response they will have. But she did not say those words but immediately began to address some issues. She is concerned about the mitochondria of cells. She has us doing several tests (things we do at home and mail to a lab) to look at this and hormones and other things. The appointment was full of a lot of information that I don't remember. I kept looking at Chris and asking, "are you getting this because I will forget". She highly recommended to soak in a hot bath with epsom salt and baking soda because the body will absorb some of the magnesium. She added a med called "T3" that is suppose to partner with the Thyroid med I am taking. I don't remember anything else about the drug and I rely heavily on Chris to remember everything and keep it straight, just like a kid with their mom at a doctor's appointment. When she started to really talk, the girls were getting antsy and I got frustrated because I couldn't focus on more then one thing at a time. Its so difficult to explain in words so you know what its like or even get an idea of what is happening in me. I apologized to the doctor and tried to explain and she moved the girls to a play room around the corner. I didn't care for this because they are out of my sight but I didn't have a choice and being up against a wall because of our current situation medically just frustrates me more. Basically, this doctor will take in all the test results when she gets them all in (it will take several weeks) and then is supposed to call us and we will go from there.

Meanwhile, the headaches and the head episodes have gotten worse in the last week. Combined with not feeling well it is disconcerting. Its difficult not to focus on an MRI that never was resolved. I just keep telling myself that its all probably just more symptoms of the Lyme.

We see the Lyme doctor Monday. I am dreading this as we need to share with her about the neurologist she referred us to that did more harm for me then good. We feel she needs to know so that hopefully other Lyme patients are referred to him. She will probably run another set of tests. She will also probably want to know why we aren't taking ATP that she prescribed after the last CD-57 results. Not sure what to say there.

I am so glad we are done with school for this semester. I am looking at us taking the next 3 weeks off. The girls are excited and I have a list (ha!) of things I want to do with them during this time off. For some reason, not having the pressure and schedule of school I find I relax more and am less frustrated and kurt with the girls.

Becka had her first little gymnastics competition and earned 3 blue ribbons and 1 white. She blows me away watching her do gymnastics. We got a piece of paper last week that they want to go ahead and move her up (several in her little group) to be officially level 3 and working out with the girls that are currently competing. This is exciting but it also means 9 hours at the gym a week instead of 6 and more money. We have a meeting with two of the coaches Monday to gets some questions answered. I am praying God shows us which way to go. She definitely has talent in this area and I want to help her grow in this talent but I also want to make sure we balance things, first with finances and with family time.

I plead with any of you that still read this blog to pray for us as we continue to fight this disease and try to function as a family. Pray for Chris as he tries to take up the slack of a wife that can't be all there and his ministry with the youth and adults. Please pray for my girls as they try to grow and learn with mom that isn't all there. Becka said the other day, "you don't play with us anymore" and it hurt. It has been heavy on my heart to have her see a counselor. I fear that she has some anger as a result of growing up with a sick mom. I'd rather her deal with it now then later. Maddie remains my happy-go-lucky kiddo. But its hard on her as she is always talking and always bopping around and Mommy can't keep up with her mentally or physically. Please pray for our doctors, for our treatment, for decisions that need to be made, directly related to medical and those not directly related. Please pray for strength for me mentally, physically and spiritually as I am at a very dry and tired spot in this process. I am so tired of everything and am so ready to be functioning and contributing to life.

I fear I will be "benched" for so long that when God does give me the sign to get back into the game it will be difficult to cultivate and be a part of relationships that were hindered during this time. I hate not being able to do anything, literally. I am thankful I can pray for people. Thank you God that I still have this ability. I pray this week finds you focusing, realizing, enjoying the true reason of Christmas. May you discover something new about Christmas. Without Christmas there would be no hope or peace. Christmas is about giving and God gave us the best gift ever! Himself! Forever! May you see, feel, experience and know this in not only your mind but your heart as well. As dry as I am spiritually, this is what sustains me and holds me in "survival mode". I have noticed during this Christmas and being "benched" that my ideals are changing. We put our tree up and I looked at it and thought, "that's silly...trees are for putting presents under. We won't have much under the tree" and then that was quickly replaced as I looked at the ornaments with "no, our tree is about family and memories and we have lots of memories". Our ideals about gifts, what we do, etc are changing and I like the direction they are going in and where they are focused which wouldn't have happened if I were "well". It has been interesting because our new ideals are so far from what the worlds ideals are. Again, I see so much of what God is doing through this time in our lives but its like being on a vacation....you can't wait to go home and sleep in your own bed. I'm not sure that makes sense. Thus I think why I haven't blogged because it feels impossible to put into words what is going on in the Saulnier house for those who are still hanging in there with us. I know my God is still here with me and I can't thank Him enough for my husband and two girls. I cling to what I do know till I am on the other side of the green journey. Its not easy being green.

Absolutely Incredible!!!!

noreply@blogger.com (Elizabeth Anne Saulnier) — Mon, 15 Nov 2010 00:59:00 +0000

I had a great nap I just dropped the girls off at church and my body is begging to go back to sleep (that and its cold and rainy outside...perfect napping weather...). I am feeling so "junky" right now but my mind has been processing what happened today and I have to write.

Nobody, except maybe Chris, will even come close to understanding what happened this morning. It has left me in AW all day and has had me thanking my Lord as well. I am blown away and yet, I am a little ashamed that I am blown away, as it might show my lack of faith but I know I had the faith, so I'm not sure why I am so blown away.

All my life I have wanted to be "useful" and this became even more a yearning when I became a Christian, and has increasingly been a "prayer" for me, especially in the last several years. In the last several months, I have never felt so useless. But today I am thanking my God for using me and for showing His mighty hands on my life.

The last two weeks I have been more doable then the couple months before it. Physically, the last couple weeks have not been bad. It has been more of a emotional struggle as we fought through an MRI with a couple doctors but physically they would fall under the "better" days.

Many weeks ago I posted two songs that are my hearts cry at this stage in this journey, Captivate Us and The More I Seek You. As Chris was preparing his sermon for this morning he decided one day in the car as Captivate Us came on the radio that it would be a great song to be sung and played the day he preached. He explained it fit what he was supposed to preach on. I was so excited and like a little school girl I hoped he would allow me, pick me, to sing it, but that thought was quickly reprimanded as I took stock of my physical situation. In not so many words, I'm "unreliable" right now, not knowing how I will feel from day to day. I was thrilled when he started talking about me singing it.

There was another day where I was listening to music in the car by myself and it was one of the first times I had heard The More I Seek You. As I sang the words I remembered what Chris had said he was preaching on and I realized that the picture I saw in my head when I sang the song, matched something he was preaching on...a lady at the feet of Jesus. I shared with Chris that I thought this song fit his "Sunday" perfectly, maybe even more so than Captivate Us, afraid he wouldn't want to do both or couldn't. To my surprise he loved the song and agreed that it did fit perfectly. He acquired the music and began tossing around in his head what other songs the congregation would sing and would that he would include the two songs above. I was in a tizzy about these two songs because they had become my hearts cry and I so badly wanted to sing both of them, but I felt so strongly I that it wouldn't be right. The number of Sundays I had been to church were sadly out numbered by the ones I hadn't. I didn't feel right that all of a sudden I would be at church, and oh, look she's singing two songs. I also didn't want that much "stage time", if that makes sense. If I could do it from the choir room, where no one could see me, then fine :-) I knew it would leave Chris in a dither as well, if the Sunday he was preaching came up as one of the Sundays I wasn't in church due to my physical situation.

Chris asked which song I wanted to do. I went back and forth. I'd pick one and then miss the other one and vice versa, quite silly in fact. It was finally decided, like maybe 3 weeks ago that I would sing The More I Seek You. The weird things is, not too long after that decision I found myself at the piano thumbing through the song quite often. This was after I had tried to dictate it and lost it and had come to the realization that my hands weren't the full problem in me playing piano these last couple years. My brain wasn't cooperating either. But I would sit down, now having the music, and found that there was just an 8 measure section that was quite challenging. I messed around with it for a little bit, and then the next day found myself back at the piano, playing the same section and was surprised that I wasn't starting all over. Something inside me said to play and sing the song the Sunday Chris preached. Well, I thought this to be a fine thought but an absolutely ridiculous thought. I have never played and sung in front of anyone outside my husband and girls, and I have not played seriously in over 2 years, much less played at all in almost a year. Oh, and who knew what days I would feel well, and which days I wouldn't so the thought of preparing it went out the window. Are you crazy? I can barely get up most days and do school with the girls. The laundry doesn't get put away and the house doesn't get cleaned much less a song prepared for church less then 3 weeks away.

I was waiting on Chris to tell me who would be playing piano the Sunday he was preaching and as each day went by and I didn't know who would be accompanying the stronger the feeling got that I was to play and sing. Miraculously, I found myself at the piano each day for a short time. It wasn't this scheduled, have to practice, playing and I didn't play for very long. If you have known me for more then a couple years you know that I have had trouble with my hands. If I used them for any thing they would hurt, but especially playing the piano. I would pay dearly the following day if I sat for lengths of time playing my favorite songs. Playing was my release, my worship, and I thought my gift but I struggled in understanding why it had been taken away. I enjoyed teaching piano but found after we moved to Simonton that it was taken away as well and before I knew it, I no longer had anything to do with the one thing that made up so much of me. I didn't get it...okay, still don't unless it was leading up to this morning.

A week and a half ago I was asking Chris if he knew who was accompanying me and he said no. He also made the comment that I appeared to think I was playing and singing the song. Yeah, so did the little feeling inside that I kept telling it just couldn't be. I shared with him that it made me nervous to think there was less then two weeks before his sermon and I would need to meet with this mystery accompanist at least once to run through it, preferably more to be comfortable and I didn't know what my days would be like so in my mind we were running out of possible workable days. Somewhere in there, after hearing it, though I'm not sure what happened, it was decided that I would play and sing it. About this time, I also noticed that there was a little time each day at the piano and it wasn't something that had to be forced...it just happened. It was also around this time that I noticed I was retaining what I had practiced through the day before and the day before that. I was able to play through the song, with the 8 measure section giving me a smaller and smaller problem...but singing it while I played was something else. It was also noticed about this time, that my hands did not hurt the next day. In fact, my hands didn't hurt anymore from playing then they do from doing anything else. I found an incredible strength when I sat down to play and yet my hands still had difficulty picking things up, holding on to things, and were their typical weak hands otherwise.

A week and a half ago I decided I really wanted this lady at church that plays the bass to play with me. I passed it by Chris and I felt really stupid asking her with such short notice...until I found out she was playing for the other song as well. I worried about what she would think....I'm good at that, but she had played on another song I sang so I gave it a shot and she accepted. A week ago at church I found myself asking her if she could rehearse that afternoon and to my surprise, again, she accepted. It would be my first time to rehearse outside the house, with a mic (I loath mics) and have to sing and play at the same time. The thought scared me to death but I got through it. We met again Thursday and two other times I went up to the church for a short time to play and try to get used to the piano, the big room and the blasted mic. No mic, I'm comfortable. Mic in front of my face and my voice shrinks to a mouse as if I am afraid of my own voice. I am not a singer by trade...at all. Sometime this last week I asked Chris, kind of jokingly, if I could use the cordless mic that hangs over the ear instead of the big metal one in front of my face. Because the service wasn't going to be a typical service there was a cordless mic available and he said I could use it. At this point, I needed to just get comfortable singing with the mic, then with playing and singing period.

The week was challenging mentally as satan worked his sneaky ways so I would feel insecure and question everything. This time was a little different in that I recognized it more and kept it at bay as best as I could. As today got closer I anchored myself knowing that anytime Chris preaches we are horribly attacked. We have had some really weird things happen on times he has preached (like the time I got home and found the front door wide open at the house in Cypress....we never went out the front door and it was minutes before he was to begin preaching...hhhmmmm.) I had begun praying back in September for us, knowing October would be rough and leading up to today and prayed even more, and asked a couple people that don't think I am weird when I mention spiritual warfare, to pray for us, especially since we both would be doing something today...it seemed like a bigger bulls eye on us.

Yesterday, Chris and I went to one of the most beautiful weddings. It was outside and just classy, beautiful, ...there just aren't words. It felt so good sitting outside..okay, it just felt good getting out, but the Fall colors and weather was a clincher for me. It was interrupted though, every time someone came up to me and said, "You look good. You don't look sick." This bothers me in so many ways but it bounced off better yesterday....and today. You see, my greatest weakness is worrying about what others think and one of my worries when it was looking like I was going to play and sing was that others would see me on the platform, playing and singing, and think I am "healed" and not sick anymore and when in reality each day is still a struggle. If you could be a fly on the wall inside my house you would see that it is still a struggle for me and my family. But through the last couple weeks God has worked with me and shown me that I am to be obedient to Him, not worrying about what others think and that He is big enough to take care of things. All I need to focus on is obeying Him. Oh, so easy to say and verbalize but oh so difficult for me to do that worries tooo much what others think. I have to trust that He knows what He is doing and that He has it all under control. He didn't ask me to play, sing, and control what others think. It has been incredible to see a strength arise this last week that is so unlike me but I would have never imagined this morning.

It became evident again, that this morning was His thing when I went up to the church for one last run in, I mean run through, with the mic. I took up a couple books of worship songs I used to play. One song, Be Thou My Vision has been heavily on my mind. So I took them hoping I would get a minute to play like the old days. I rehearsed my song for today and it went so smoothly. I pulled out the books and began playing and the hands stiffened up and my playing went back to dull and lifeless. It was so evident that God has been the one playing The More I Seek You these last couple weeks.

Last night going to bed I told Chris that I totally expected not to get any sleep, for the girls to be sick in the morning, that I would feel junky and have a herx, that one of the cars would break down, etc. I laughed as I then said, "but we are all going to church". I went to bed last night surprised we hadn't been more attacked yesterday...and yet as I type that I am reminded of what people said yesterday...maybe we were attacked but I was protected and it bounced right off without much of my notice. Although, that thought was quickly followed by, "I would notice if our front door was wide open though". I dreaded the night before today knowing that my stomach would be in knots....it wasn't.

As I suspected, I had a horrible nights sleep. But my girls were healthy, the cars worked, and I felt pretty good. I ate breakfast to ward off any excuses satan could use to work against me. God had made it evident to me in the last week that I was supposed to play and sing this morning in church, even though the thought still scared me to death.

The girls and I had a pretty easy morning getting out of the house (it can be pretty hairy). I was nervous but underneath it was a confidence that was not my own, but a confidence from being obedient, knowing that this morning was His idea, that He gave me what I needed to be there this morning, and that it would be what He wanted it to be. I continued to pray for His control over my hands, voice, mind, and body. I rehearsed a little but just felt a confidence, even though I played worse then I had in days,

My husband looked strikingly handsome in his new shirt and tie he got for his birthday from his mom. The service was incredible, so worshipful. Chris' sermon was incredible. He appeared so comfortable and natural as if he has been preaching in big church all his life. Chris' dad was there this morning as well. Things went along so smoothly almost as if I wasn't in it at all, but just watching from a distance....someone else was in control and how good that felt. I knew I was in the picture though, when about three quarters the way through his sermon my heart began to speed up and try to exit my chest. The hands went clammy and I began to pray that God would control my heart. Again, other then the heart there was a marked confidence....a, "this isn't my favorite thing to do, I'd rather not be doing this, but I need to out of obedience" feeling. And because I was secure in Who had orchestrated this morning, there was a confidence in knowing Who was in control. Its a fabulous feeling!

Chris prayed and I moved up to the piano. I don't remember a whole lot other then my hands and legs shook through the entire song and that I made it through. My hands shook through the entire song! In college when I would play in front of peers and professors they shook but I horribly messed up. This morning the only way I can put it is I was not in control of my body, not the shakes and not the playing that came out, nor the voice....nothing.

We were driving to have lunch with Chris' dad and it hit me....I played and sang in church. I was blown away. It is something I have pictured doing as I would play and sing worshipfully under the protection of my own roof, but never thought I would do or be able to do on my own. This morning was not me but my God. There is this giddy feeling inside as I have been thanking my Lord today for using me. I have felt so useless these last several months but today I felt used and extremely grateful that He would choose to use me in that way and reveal himself to me in this way and so many ways that just don't come out on paper. To most it is insignificant and doesn't appear to be much. Granted, my heavenly Father didn't send me to Africa to help the poor and hungry but I felt used today. He didn't use me in a way that effected big changes in government or change anything nationally or anything one might think of as big. But He used me this morning and to look back at how He did it, His protection, His provision, His hands. It is incredible! Its so difficult trying to put it into words to share what He has done. I try to go back and share information to help you understand and yet its a "picture" for very few to see. It is nothing big to most but to me it is huge for my God to place on my heart to do something completely out of my comfort area and out of my physical strengths, and help me obey, and show me along the way, and to surrender to Him in a way I haven't before, only for Him to use this body, that on its own is nothing, but with Him encompassing it makes it what He needs it to be for His purposes only...I find this incredible! Thank you God for using me today. Thank you God that you would even look on me and love me so much as to use me today. I have been crying out lately that I felt of no use. Thank you God for showing me that I have not been tossed aside for vultures to feed on, but that you still think of me and think of me enough to use me today. Thank you for allowing me to feel your hands on my life.

I was helping my girls clean up their rooms (mommy style) and caught eye of the clock and felt an urgency to get them down before tonights activities. And, as if by stroke of midnight, my carriage turned back into a pumpkin and I began to feel bad. I went down for a nap with a headache and feeling really nauseous...my typical weekend "junky" feeling from the meds. I woke from the nap feeling worse but I have a new skip in my heart and I am grateful for feeling junky. After dropping the girls off I was driving home and feeling junky and aiming for my bed, I realized that the last two weeks have been "better" days and it was then that I realized how He has sustained me these last two weeks. Without His sustenance I wouldn't have practiced and been ready. Without Him I would not have seen and fought against satan's attacks. Without Him I wouldn't be a giddy little child basking in her Father's embrace right now. So bring on the junkiness.

This morning pulling out of the driveway, Becka said, "Mommy, isn't this a herx weekend?" I thought about it and back when we first discussed me singing I had looked at the calendar then and knew that a herx would be due between last weekend and this weekend. At the time it discouraged me from singing today but somewhere not too long after that I had forgotten about it. Thanks Lyme and thank you God. Sometimes not remembering is bliss. Absolutely incredible!!

Bummed

noreply@blogger.com (Elizabeth Anne Saulnier) — Mon, 08 Nov 2010 20:33:00 +0000

Our appointment today with Dr. Franklin was cancelled. They called late this morning and said due to complications with a procedure he had this morning all his afternoon appointments were cancelled. I'm really bummed.

We were doing really well conquering things this morning with school and phone calls. Chris helped me with the girls school and we were done before noon. I was all pumped up to go to this appointment and hopefully get some answers that would put this MRI to rest. Just not meant to be today. I have found it difficult to switch gears....its kind of like, "now what do I do?" I use to be able to switch gears quickly but I just feel lost today. Our appointment has been rescheduled for Thursday afternoon. Its the waiting game...though it really doesn't feel like a game because I like games. Maybe I need to make it a game.

I just keep looking at the clock and feeling like it is going so slow. I have to say I think I like this time change. It was a little easier to get up this morning with the sun already up, then when its dark and my body thinks it should still be in bed.

I have noticed, despite the MRI and tad lower CD-57, a different kind of energy. It still low, but not as bad that I'm begging for a nap. Don't know if its a lower key schedule and adhering to naps or an actual change in the body. I am voting for the latter. However, it could be that I am hydrated more. Ugh, could actually drive myself crazy trying to figure it out.

One daughter is off to gymnastics and the other is off to take a nap with me. I have discovered the secret to a great nap. One, a face mask across the eyes, blocking out all light even though there are long dark curtains, is essential. Two, the sweet warm body next to me of someone that resides in my house. One in particular will bring her monkey for me to snuggle with as I snuggle with her. I type this and she just brought me Girlie, the monkey and is climbing up into my bed. Third, wearing flannel or sweat pants, sweatshirt and snuggle down under flannel sheets with 3 blankets on top. Last, but not least I put the bed buddy in the microwave for a couple minutes and then put it under the sheets with me down by my feet. Yes, this is the perfect equation for the perfect nap. Oh, I almost forgot....the box fan in the room needs to be on medium as a white noise to block out all other sounds that will jolt me awake. This house has more sounds in it. The nervous system appears to pick each and every one.

So, I am going to take a great nap and let time pass while I soak up some time with my little girl and Girlie :-)....two of my monkeys.

What Is Your Agenda?

noreply@blogger.com (Elizabeth Anne Saulnier) — Sun, 07 Nov 2010 02:40:00 +0000

I'm not sure where to start as I am still processing what happened this week. I don't believe in coincedences and I believe that God has a purpose for everything. Monday, we had our appointment with Dr. Salvato. This led to an MRI done that morning. Tuesday the ER nurse calls to say that basically the sinus cavities have liquid in them making it difficult in an MRI to rule out stroke (I would like to think I could rule that out). Wednesday, Dr. Salvato's office calls and just simply says, "It is probably nothing but she wants you to see a Neurologist." I asked for a referral hoping that a referral from Dr. Salvato would be Lyme sensitive. Thursday, her office calls with the referral of which I called and was able to get an appointment for that afternoon. I have to say there was a slight hesitation but the human side dismissed it.

I dropped the girls off with some sweet friends who were so excited to have them (I love that) and Chris and I were on our way. It felt weird going to a doctor's appointment that wasn't Dr. Salvato and wasn't Lyme related so to say. It also felt weird to have an MRI that resulted in being referred somewhere. They have always come back "normal".

This guys office is also off of 59 not too far from Dr. Salvato's office which is good...wouldn't want to spread them out too far :-) Every person we came in contact with in this office was very sweet and down to earth...a.k.a. they appeared to like their jobs. As par for Dr. Salvato's office, they hadn't faxed over the MRI report as they said they would. So, Chris was back on the phone to get the report to the office before we saw the doc. What good would this appointment be if he didn't have the report? It was the whole reason we were there.

We waited and waited and found myself praying as I usually do but it was different. I found myself praying for protection, spiritually and physically and mentally. I found this odd and after praying for His protection I shifted and began praying for what I usually do...for clarity of mind for all people involved, for God's spirit to sweep this office and mind would be clear unlike any other time. I prayed for wisdom and discernment. But there was a nervousness about me. For the most part I was calm, or so I thought, but the longer I waited the more this calmness dissolved and I didn't understand why. Chris had checked to see if the MRI report had been faxed and the nurse said it had and she had put it with my chart for the doctor to see.

Chris got up and went to the restroom and wouldn't you know this is when the doctor decides to finally come in. I knew immediately that something wasn't right. He walked in, looked at me, looked down at the chart, said hello and asked how I was doing as he probably does with every patient (more routine then with any true sincerity) and I said "fine. How are you?" This caught even me by surprise as it apparrently did him as well by the look on his face when he looked up at me and then made a sound equivelent to "whatever". Then he said, "Do you know Paul?" Excuse me? Now it was my turn to be caught off guard. I replied, "Paul is my husband's father." He quickly walked over to this desk and sat down and began to spat off instructions...."I will ask you some short questions and you will answer with short responses and then when we are done I will give you chance to ask quesitons." It was said with such curtness and no gentleness as if it was my fault I caused him to breach confidentiality. He began to ask and it began to get tense. Without Chris I struggle because I don't remember things. Chris walked in the door and I exclaimed, "He is your dad's doctor." I could see this doctor tense up. He said nothing to the matter and continued on with his questions. I was quick to look to Chris for some help with remembering some things and this doctor was quick to shut Chris down. He wouldn't allow Chris to say a word or contribute what so ever. This frustrated me but near as bad as trying to answer with short answers. Not knowing what is Lyme and not Lyme it was difficult to answer the questions. I was in this doctor's office due to increase in headaches, sharp pains over the right ear and a right foot that is turned in. All this led to an MRI which put me in this man's office. I tried to explain that I didn't know what was Lyme and not Lyme and he interrupted me and cut me off saying, "You aren't in here for Lyme." He at one point looked at me and said, "Have you ever been to Connecticut?" I replied, "no" then he said that I couldn't possibly have Lyme. He also asked if Dr. Salvato is an infectious disease doctor..."no". Then he asked if I had ever seen an infectious disease doctor and I replied, "no because they refuse to see me." It was here that I began to cue in on why I was feeling uneasy. He asked me if I know of any reported cases in Texas and I replied that I had read that there is at least one reported case of Lyme for each State Park in Texas. He looked at me weird like what did I know. He asked if I could quote the source and I said, "No, I can't right off the top of my head"...I'm lucky if I can tell you what I had for breakfast right off the top of my head. He stopped there. By this time I am in tears with frustration, feeling interregated and not helped. I looked at Chris and asked, "Is this Barbara's doctor" and Chris said, "this is dad's doctor". Right then and there I had a sudden urge to get up and walk out but the other side said to see this through, don't be rediculous. We continued through the questions. He asked if he could examine me but with every thing he asked me to do I felt I was being treated as if I was faking it. Right before he examined me he asked if I knew where the head report was located. Never being one to be quick on my feet I was surprised that I said, "my head? or the report?" Finally, almost 13 years of training under Chris and I was able to think off the top of my head. He chuckled and quickly turned on his heels. He called in his nurse and told her to get Dr. Salvato's office on the phone and get a report of the MRI faxed to him. I knew he had the report in his hand, but I wasn't about to be the one to "correct" him. The nurse looked at him and told him he already had the report. Once again, I felt like I was at an appointment where the doctor had to be reminded of why I was there. He was doing a neurological work up without even knowing why I was there, not even considering the report and what was on it. He quickly sifted through his short stack and located it, took 20 seconds to read it and then toss it back on the desk.

He then sent me off to another room to have an EMG done and Chris stayed behind. All I could picture was this doctor lecturing Chris on how his wife is faking it, and doesn't have Lyme, etc. I wanted so badly to get out of there. Having had an EMG done before I was not looking forward to it. Here again, I was misled by the ladies niceness and "tricked" as she went through her part. I had even shared that I had one before and asked if she was going to do the needle in the thumb joint. She said, "oh, no I don't use needles. I use electrodes." I thought I was safe. She finished and said the doctor would be in. I asked if I could get dressed and she said no. Then she said, "do you want me to tell you what he is going to do?" Um, duh, YES!! She then explained that he would come in and do his part..with the needles.

Chris had come in through part of her part and I was looking at him to discipher what had happened with the doctor. To my surprise he was calm where I was ready to jump off the table and leave. When the lady left I looked at him and said I wanted to leave. He said he talked with the doctor about his chances of getting parkinsons and about his dad...off the record. We waited and waited and I dreaded what was to come.

He came in within 2 minutes was done. It really wasn't anything..literally...seriously it was as if he was playing "doctor". His demeanor was different. He was acting cool. He sat down and was quick to tell me that I have a damaged nerve in my right wrist and preceded to talk intelligently with me giving me the latin word for this, etc. I couldn't believe this guy. I asked what was on the MRI and he quickly picked it up and just as quickly tossed it down and said it shows I have headaches. Really? I have had headaches for years and never once have the MRI's come back showing "headaches". He went on to explain that he was concerned about all the meds I am on that I should be in the hospital under all those meds and yet in the next breath looked at me and said he wanted to put me back on Topomax and another migraine med. He said he wanted me to start wearing a splint at night to help with the damaged nerve and he wanted me back for an EEG and again for a follow up that he couldn't just prescribe these meds and "let me go". All this was spinning through my head and all I kept coming up with is inconsistencies and stuff that didn't make sense.

We walked out with the prescription slips, two appointments and a sheet instructing us to get a splint. I questioned whether we would be doing any of it. I walked out of the appointment 4 hours later with mixed feelings and questioning everything. I couldn't tell if it was a good appointment or bad, productive or not. I had a nagging feeling that I needed a copy of the MRI report.

All that night and the next morning my mind reeled back and forth, annalyzing the appointment and something did not feel right. I was trying to process what had happened, and where did it leave us and where do we go from here. I was angry that if an MRI that just says, "headaches" on it and didn't really mean much landed me in an another doctor's office. I don't care to see doctors. Its not my choice of how to spend my time. I only went because, for the first time, something on an MRI showed something that got me referred. Stuff didn't make sense and the more I thought about it the more I needed answers before I could move past it. I texted Chris and said that I needed to know the name of the doctor that his stop mom went to see that led to her verbally attacking me in my own house on Father's Day. I had a really strange notion. He came home for lunch and we talked about it. I could tell he didn't want to call her and I didn't blame him. He did and we found out that it is the doctor that told her I didn't have Lyme. So, this guy is used to talking about other people in other people's appointments. She went through the conversation with Chris and more things surfaced that just spoke "mal practice" to me. Example: In their conversation she said she didn't know that he did carpal tunnel and he replied that it was the bulk of their practice. I connect this to why I had an EMG and why I was told I have nerve damage after he barely examined me through the EMG and why I was told to wear splints and come back. Knowing that this is the same guy anger rushed through me but also relief and understanding and in hind sight I could see the warnings. Because of who this guy is, everything that happened in his office does not matter. It is nulled and we still have an MRI with no answers.

It is so obvious that he is not familiar with Lyme patients or he would know that they have had years and years of tests and would recognize when he isn't performing his full part of the EMG, especially after getting news that there is nerve damage. He contridicted himself left and right.

The entire visit with him left me feeling violated, robbed from, made out to be a fool, and stupid. I feel the only interest this man had was to make more money and support his theories that Lyme doesn't exist. He did not have my best interests or my families at heart and therefore I find him extremely dangerous.

Friday, I ran by Spring ER and obtained a copy of the MRI. Reading it with Chris over the phone we were misinformed. There are two findings on the report. One is that yes, the sinus cavities do have liquid in them. And two, that a white spec was found on the right side...the very side where I have the sharp pains.

All this has left me feeling I can't trust anyone. In saying that I feel myself turn inward and not want to have anything to do with anyone because, as humans, we all have agendas. If I don't support the agenda you have then I am going to get an tainted response, a response shadowed by what your agenda is. What is your agenda? Right now I know I have my husband and two girls, but more importantly I have my God. You see, in this world, everyone is fallible because we are human. We all have agendas, some good, some bad. However, we all view our own agendas as "good" and worth fighting for. One thing I get out of this week is I see God pulling out things and people that I tend to put my trust in or tend to look for for answers when in reality He is all I can trust and He is the only one I should look to for answers. One thought has been to get off all meds and trust in Him completely for my healing and restoration. This scares me as I know scientifically that if I get off all meds I will get worse to the point of no function at all. But He is bigger then that. But, in all the years I have prayed for healing, and even now as Chris prays for my healing every night, there is a inner knowing that it isn't His plan. I can't explain it. Its not a loss of hope. I know whether I am healed or not, He is with me. Whether I have Lyme or not does not determine my relationship with Him. It doesn't change His love for me and never will. To this I cling as all else will fail me at some point at least once.

I am still processing all this and have not come to terms or grips with it. It is not settled in my soul yet. I am still searching for what it is He wants me to get out of it, do with it, etc. Chris and I question why Dr. Salvato would refer us to a guy like this. There are a lot of questions but it has reminded me of where I need to look for them and everything else. I find my husband and girls and me clinging tighter to each other. But I also find that outside the walls of my house I want little to do with, even people, and I know this isn't of God. I will have to work through this.

At the moment, we have an appointment to see my ENT who we trust greatly. He is not Lyme literate but we met him the first time we questionable MRI back in 2000 when we were told we had cancer. We are going to him for a second opinion. He has always shot it to us straight and won't even come close to it if it is out of his expertise. Secondly, it has made us realize we are where we are suppose to be with Dr. Salvato. However, we have received the name of another natural health doctor who does take insurance but is in Conroe...and hour and half away. With our deductible met we are thinking about seeing her on other things we can do to strengthen the body in this fight against Lyme.

Oh, Friday morning I was awoken at 7:30 by a nurse in Dr. Salvato's office to tell me that the CD-57 was down to 44 (46 last time) and she wants me to start taking ATP...an immune system strengthener. Makes you think.......

Chris preaches on November 14th and I am also playing and singing. I find it interesting that I haven't played in over a year, and yet, in the time I'm told I have nerve damage, I am able to play and sing a song. I feel it is nothing less or more then the grace of God and His purpose for this song that Sunday. I have no expectations for the day after :-) Chris and I both know and believe that a lot of what we are experiencing right now is spiritual warfare. Its like being in an airplane that has no doors and is in trouble. We are hanging on tight and waiting for the landing (aka Monday, November 15th). Please pray that we are found with flying colors through this storm.

Note: I find myself blogging with a lot of emotion tonight and find it interesting that I have not once typed the doctor's name that we saw this week. I don't feel it is of my doing. I also believe this blog may be read by other Lymies and would not want, under any circumstances, to expose them to this doctor. I would not recommend him to anyone for anything. If you have a concern with who he is please feel free to email me or comment.

Is There Anything Up There?

noreply@blogger.com (Elizabeth Anne Saulnier) — Wed, 03 Nov 2010 03:13:00 +0000

We had our appointment Monday morning. We left with mixed feelings. Sometimes I feel we are told what they think we want to hear and then when we leave we are feeling a little ________. Not sure what the feeling is. This was definitely one of those times. I will say this: She does sit and take her time with us for the most part. She is fairly patient with our numerous questions and though she appears ready to move on to the next patient, I do feel she is fair with her time. I just don't feel we get the depth and with the inconsistencies in communication I often lack trust in my care. However, this doctor has more then 20 years of experience in treating Lyme and she is all I currently have. I would love to go back to the natural health doctor but finances just don't allow for that at this time.
We went to this appointment feeling that the last 5 weeks there have been more "rough" days then "okay days". Rough days are often characterized by being in bed for the majority, if not all, of the day. It is also characterized by our typical daily routine interrupted because I am not capable. Though I don't have "terrific" days as far as how I feel, a better day is one where I can get through the day without bed and routine interrupted. "Okay" days are still marked with sluggishness and in the last couple months, some pain.
Chris and I were sitting in the exam room waiting for the doc when I shared with Chris that I thought I felt better when I was on the IV. I felt this was a ludicrous idea but then Chris pointed out that I was getting a full bag of fluids each day. This had never crossed my mind, not that much crosses it anymore anyway. I was also better at drinking more water because I needed to to get other stuff down :-) The doc came in and we approached her about our first two concerns. I don't feel I am eliminating like I should and that we have had more bad then good days. Chris has tried to get me an over the counter "aid" but my experience in the past with those has sent me way to the other extreme and I am really wanting my body to handle it naturally....unfortunately, I putting a lot of unnatural chemicals into it so this may be an inappropriate expectation at this point. She recommended taking Cenocot to help things along. As bad as I feel I am willing to try something now. I shared with her my observation and Chris' point about the water and she agreed. She suggested drinking a bottle of gatorade a day (I don't like gatorade). I mentioned that I usually just drink water and she said it wasn't enough to sustain me that the sodium in gatorade opens up the veins/vessels and aids in better "something".
We moved on to another on of our concerns... the headaches and the sharp pain over the right ear. The last time we saw her she gave me a ten day supply of an allergy medicine. It didn't do anything that I am aware of. She had looked at my ears and said they weren't infected but "sunken in" or something like that. This last appointment, she didn't look at my ears, though they have been bothering me more then had before the last visit. She mentioned possibly doing an MRI. Then we moved on to my observation that my right foot is turned in. When I sit down the right foot turns to the left and lays on its outer side. I asked her if it was odd that most of my symptoms are active prominently on the right side. She agreed that it is odd and not typical. I shared that with the foot turned in no wonder the right side of the body isn't happy. Feeling like I was complaining and feeling self conscious about the number of symptoms we were talking about I told her that I didn't know what fell under the umbrella of Lyme anymore and therefore, what to be or not be concerned about. She did say that Lyme could be causing the foot turned in though it would be rare. At that point I asked if it wouldn't be a bad idea, with deductibles met, that we go ahead and do the MRI. She said we could go downstairs and do it that morning and have results the next day.
She ordered more blood work and depending on how that comes out, will determine if she does any more tweaking and adjusting, though she hasn't in the past. She still appears not satisfied with the CD-57 level and it "really needs to be 100-120s" this next time. We'll see. I am more interested in the routine blood work showing kidney and liver stuff due to the lack of elimination. I am looking forward to trying the Cenocot and added fluids to see how it effects how I feel and am hoping it helps me have better days. Often times its the smallest and simplest things that can make the biggest impact.

Monday afternoon some time during nap I received a message from "Denise" at the ER. Its pretty bad when you have started building relationships with the staff in an ER. Makes me think of Tim the Toolman on Home Improvement. I really wasn't expecting anything outside of "normal" and with results that fast I figured, "yup, another normal". Most people wouldn't understand this but if you are familiar with the last 10-15 years of my life you know thats all we heard and yet the symptoms continued to get worse. So, its difficult to be having symptoms and no answers and you cringe to hear "normal" because you feel anything but normal, as if normal exists anymore for anyone.
I called the ER back this morning and was surprised to hear that the MRI showed Acute Chronic Sinusitis or Chronic Acute Sinusitis...don't remember the order of the words...just the words and that alone is a feat. She explained that this basically means that there is fluid in the sinus cavities. We are being referred to a neurologist (I thought this was weird...why not an ENT specialist) due to the concern that they can't see if there has been any type of stroke due to the sinus cavities being full. Again, for most people they might "freak out" over this. For me, there is peace and a direction to go in and possibly and answer to the headaches, sharp pains above the right ear, and turned in foot. Usually, if there is an answer, there is another answer that may bring you relief from these symptoms that make life a challenge right now. I am glad we pushed for the MRI. It was interesting because the nurse said, "well you are already on antibiotics for sinusitis" and I replied, "the 3 antibiotics that I am on and have been on since March are for Lyme, not sinusitis"....."oh..." was all I heard after that. Makes me laugh and wonder. If it is a sinus infection what will they treat it with? A fourth antibiotic? If they change one of the antibiotics I'm on they would have to change the "family" it comes from to make a difference and then you are altering the Lyme treatment. Makes me ponder.
We know two neurologists. The most current is the one convinced I have a muscle disorder. She was thorough and spend a lot of time with us and determined. I have thought a lot about her several days before yesterday. I would love to go back to her and share with her about the Lyme so that if she has future patients that fit my situation she might look to Lyme and they would be treated sooner. However, she does not take our insurance. The other neurologist was the one that helped me back before the girls were born when I was fighting migraines. The last time I saw her, I had gone in to ask about MS, looking for an answer to my debilitating symptoms that continued to get worse, and MS fit most of my symptoms. She wouldn't even listen and consider it or was open to discuss things further....literally it was a brick wall smacked into by a fat ego. So, not incredibly anxious to back to her...though I would love for her to hear about Lyme, I don't think she would be open to it...it would be unproductive and ineffective. We will be getting a referral from our Lyme doc and then praying over where God wants us to go. The advantage to seeing the referral is that they will most likely be Lyme literate and therefore we won't hopefully have to go through the questions and explaining about Lyme. I do want to jump on this quick as to hopefully find some relief from the head. I had mentioned to Chris that one thought I had was that it could be sinus related since my headaches were worse after a nap (laying down) then if I was up most the day. This baffled me though because, though everyone is really suffering right now with the seasonal allergies (my poor husband included) I really didn't think I was. I have some drainage down the back of my throat but my throat isn't sore, I rarely blow my nose, and when I do I rarely get anything. Being on antibiotics for the amount of time I have been on them and the amount time I will be on them is going to pose some interesting questions and situations.
Oh, with all the challenges I have had with my mind I comically made the comment Monday before the MRI that we will officially know if anything is upstairs or not. Just for the record, Chris sat by the technician the entire time and said that he saw a brain, so I am good :-)
Today was another challenging day with school and the girls and things not going right no matter how hard I tried. It was another day where I just wanted to quit and I questioned everything. And yet I sit here now in peace and I think it has a lot to do with the preparation of a song for the Sunday Chris preaches. You see, I haven't played piano seriously for over a year and a half and I can count on one finger the number of times I have touched the piano since we moved to this house in February. What was once thought to be hands not working I discover was more a mind that wouldn't work with two hands that were deteriorating. Two of my hearts cry songs are being done the Sunday Chris preaches. He assigned one to me. A while back I tried to dictate the song and my mind (and computer) wouldn't cooperate. Chris purchased the sheet music to have, and his youth have begun singing it. Not hearing of who would accompany me, I found myself sitting down at the piano and trying to play it. It is a simple song with not a whole lot to the piano accompaniment part but I still didn't expect I would be able to play it. But something inside wouldn't give up after I went back the next day and hadn't forgotten what I had played the day before. It wasn't like starting over. There was a peace and "knowing" and gentle nudge that said "I want you to play and sing this" which was quickly followed by, "are you crazy God? I have never played AND sung before together in front of people, much less at church and on a Sunday Chris is preaching! (as if He didn't know this and hadn't made this connection). I continued to go back and practice it and it has been a great time of worship for me each day. My hands don't hurt any worse then they would from doing anything else and I am remembering, retaining what I have worked on. Having still not heard who would accompany that Sunday, I continued to practice a little each day and have been amazed at what has developed. Chris has made the decision that I will play and sing this song the Sunday he preaches. Satan has already begun his attack and if I think too hard about doing this I begin to freak out a tad but then I sit down and play and sing and its as if God is saying, "see, you can do it because I'm doing it through you." I know satan will continue to work his stuff right up to the first notes I play that morning but if this is God's doing then it will be what He wants it to be. I truly feel His hands on mine and it has been truly amazing and incredible. I do worry (satan creeping in) about a lot of things and one of them being what others will think (always been the hole in my wall and gate....for those who attend our church you know what I am talking about). I have a difficult time as it is for people to understand just how much of a challenge it is to do everyday life. What will they think if they see me playing and singing? I'll never get them to understand. But I have to remind myself that its not my job to "make" them understand or to worry about what will be. Rest and Rely on the Hands that are in charge. So much easier said then done for this Lymie, particularly after days like today, but not after playing and singing to my God. Now if I could just figure out a way to....
Please continue to pray for direction, God's healing on God's time, and for Chris as he prepares to preach November 14th. Please continue to pray for the girls as they are growing up with a sick momma who doesn't always think clearly and keep up with them (physically or mentally). Please pray for the wisdom and discernment for all those who come in contact with us (both medically and friends and family). Please pray that treatment is where God wants it to be and that I will continue to learn to rest and rely in His hands, the rough days and the okay days.

Come To The Water

noreply@blogger.com (Elizabeth Anne Saulnier) — Thu, 28 Oct 2010 04:03:00 +0000

Thought I would blog about what is going on on the outside as well as on the inside. The days continue to be challenging and the more they are challenging the more it is challenging on the inside. I don't do well with long periods of pain and between headaches and muscle cramps, joint stiffness and leg tenderness I am hurting somewhere it seems at all times. The headaches have been pretty debilitating this last week. By the end of the day the episodes of sharp pain above the right ear really wear on me. As usual, coming up on an appointment, we have our questions we hope to get answers to. One problem we have is that the last time we had an appointment they got up in arms about the shoulder pain (after blowing it off the appointment before that) and said they were calling Dr. Riley's office to get copies of MRI's done. We never did hear back from them and my intution (which is rarely wrong) said to contact Dr. Riley's office and get them anyway...including the xray films. Dr. Riley's office claims they never heard from Dr. Salvato's office. Very interesting. Leaves me feeling really insecure in my medical care. Ah, this too I must deliver to God to handle.

This week has been exceptionally difficult not only physically but extremely difficult emotionally. I tend to think of valley's as beautiful but this has been anything but. A couple weeks ago my father brought up the depression topic and I very confidently said I wasn't. Probably not 2 minutes after that conversation things got rough (almost as if satan laughed and said, "we see about that"). We got back from our wonderful getaway and things got rough. I'm feeling so run down again I need another getaway. While away I was so drawn to the water.

I don't know what it is about water and if it the same for others or different for others. But all I wanted to do was stay on the beach and listen to the water till I am free (in remission) from Lyme. Obviously, not very feasible without extreme consequences. :0

So I am processing in my mind (always...its never quiet...no, I don't hear voices...it's just always going...there was a time back in April and May where it was quiet....ah, silence) how can I get "water" at home? I have a counseling session this last Monday and after Thursday where I fell apart and Friday, learning about a friend who passed away, and being in bed all weekend I was really ready to talk to someone where I didn't have to worry about what they thought. After balling practically the entire hour she told me to go to my happy place. This is a place we established 3 years ago. We haven't "gone there" in I don't know how long (thanks to my memory) but to hear her say those words was like ointment on an open wound...soothing. She asked me if I remember where it is. Oh yes! Why hadn't I thought of this before?

As a kid I used to go to camp each summer. It was a bible camp. I don't remember the name of it. But I loved it there. I thought it was in Wetmore, Colorado but now I can't find Wetmore on a map. This place had nothing on the camps the youth go to today. It had horses (right up my alley) and fishing. That's about it. The boys dorm was on one side and the girls on the other with a meeting room (small) in the middle and the dining hall behind that. There are some great memories (what I can remember) there. One of the things that stands out to me was a bubbling brook, in the woods along a hiking trail that we took to and back to the lake. The water was cold and crisp and we were told that is was fresh and drinkable. I don't know why but I remember a rusty metal object in the middle of the brook. But I remember the sound of it more, and I remember the cold and refreshing water in our hands. I remember how the sunlight would peek in between the tall pine trees....mostly shake with clusters of bright, warm sunlight.

As I close my eyes and try to go to my "happy place" I find it difficult to stay there. My mind kept drawing me away to other thoughts, any thoughts, piddly thoughts and I wanted to stay on the bank of this bubbly brook. The brief moments I was there I felt my soul crying, "quiet, peace, water. I want quiet, peace and water." Oh, how my soul yearns for these. I'm processing this on the way home...I have an hour drive. The last at least 3 times I have gone to see my counselor I have set my ipod to repeat through 2 songs, sometimes 3. They are the 3 songs I listed in an earlier blog when I do church in bed. One of the songs I'm supposed to sing in church the Sunday Chris preaches. These songs are my hearts cry! As I am singing through them, over and over and over I'm driving through countryside. There is an area where I turn a sharp corner and it straightens to reveal open pastures on both sides of me. It is here that I have encountered a crop dusting plane. The first time I saw it sweeping down and then back up, and then over the road right behind my car, my breath was taken away with the rumbling sound of a single engine plane. So much so that I crave to see it again every time I drive through this spot. I was so blessed to see it, though in the distance, this last visit. There is something so freeing when I see it. I can't explain what it is but it is soothing for the soul.

(picture in no way does the experience justice but there is only so much you can do while you are driving :-) )

It was during this drive home that I realized something. I had felt God saying, "come to the water".....I realized this morning that its one of Maddie's memory verses...she can quote it to you verse and address, but I can only quote the verse...."Come to me, all those who are weary and heavy-laden, and I will give you rest". I know that God often refers to Himself and His word as being "water". So, here is this "water" theme, uh, more message, being played out in my life. Chris is preaching on Luke 7 about the woman weeping and washing Jesus' feet with her tears. Oh, wow! The picture this takes on right now! Basically, we should be so captivated by Jesus and His love and our salvation that out of that flows our service and life. One of the songs I sing is Captivate Us by Watermark. I originally wanted to sing it the Sunday Chris preaches. It will be sung by someone else. But it is one of the two songs I listen to over and over and over and my heart cries out the words. So, I'm singing them in the car, driving and God starts showing me how my heart's cry to Him is being answered. The words are:

Your face is beautiful

And Your eyes are like the stars.

Your gentle hands have healing

There inside the scars.

Your loving arms they draw me near

And You smile it brings me peace.

Draw me closer oh my Lord,

Draw me closer Lord to thee.

And captivate us, Lord Jesus

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing River,

Draw us nearer.

Holy fountain consume us with you.

Captivate us, Lord Jesus, with You.

Your voice is powerful,

And Your words are radiant bright.

In Your breath and shadow,

I will come close and abide.

You whisper love and life divine,

And your fellowship is free

Draw me closer, oh my Lord.

Draw me closer Lord to thee.

And captivate us, Lord Jesus

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing River, draw us nearer.

Holy fountain consume us with You.

Captivate us, Lord Jesus, with You.

And let everything be lost in the shadow,

Of the light of Your face.

And let every chain,

Be broken from me,

As I'm bound in Your grace.

For Your yoke is easy,

Your burden is light.

Your full of wisdom, power and might,

And every eye, will see You.

Captivate us, Lord Jesus,

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing river, draw us nearer,

Holy fountain consume us with You.

Captivate us, Lord Jesus, with You.

As this is coming together the other song cycles around and this is the one that decided I would sing that Sunday. I wish I could sing both of them but I don't want that much "limelight" (no pun intended) especially since I am not there every Sunday....I don't want to all of sudden be there and, oh, by the way she is singing all the songs. Now, if I were singing them from the choir rehearsal hall and it was being piped out to the sanctuary that might be one thing but I don't like the attention. Again, I'd rather show up to church invisible or clear (Chris calls "clear" a color) and worship my Lord. So, here I am singing through the second song and as I am singing the simple words I realize that my hearts cry is being answered again. "The More I Seek You" sung by Kari Jobe:

The more I seek You

The more I find You

The more I love You

I want to sit at your feet

Drink from the cup in your hand

Lay back against you and breathe

Feel your heartbeat

This love is so deep

Its more than I can stand

I melt in your peace

Its overwhelming

It sings through it several times. There's the picture again, only instead of the girl in the bible weeping and washing Jesus' feet with her hair, I have always pictured me at Jesus' feet, in awe, where nothing else in the world matters, and oh, the comfort that is felt being that close to Him that I can feel His heartbeat. Even as I write tonight there are connections being made.

I feel God has been calling me to Him. He is my water, His word is my water and my soul thirsts for Him and when I seek Him I will find Him and He is all I need. This is what I get, but this is so difficult to do. I got excited as I was driving home and making these connections (aka "listening") and thought, "you know, I want to go home and look up every verse that has to do with water". Has it happened? No. I do find it interesting that since Monday, I once again wound up in bed all day yesterday. I though it was from doing to much Monday with Chris leaving town....but maybe not. I don't know. I don't put it past satan, and I also know thats how this disease works....it doesn't take much to knock me down. I don't have a nap in the afternoon and I am dead and not good for anything the rest of the day and possibly the next. How easily the world takes our attention away.

We joke about how with either girls, but particularly more with one then the other, they are distracted and Chris and I will look at each other and say, "squirrel, squirrel, squirrel" and laugh. Hello? I am just the same.

Oh how I wish I was this bubbly person, happy all the time, you would never know I was sick type of person. I wish I didn't struggle with my current situation but was at peace with it and had a quiet heart before God about it. I was this person several months ago and then August hit and something happened. I don't know what, except maybe new expectations felt by others but mostly put on myself. Maybe because I don't have an IV in the arm I have a difficult time remembering that I am not well, and so do others. If left to my own devices and not tied down, I will self destruct if I'm not careful. Thus, why I said months ago that with freedom comes responsibility. Sometimes I think it would be easier to not have the freedom....but then when I am there I'm begging to be free again. Good think God isn't ever tired out.

All I can say is I am learning. I feel this is a time where God is working on a really stubborn layer and His chiseling is painful. But I would rather have the chiseling and His hand on my life then for Him to not be involved with my life at all. Doing life under a lyme umbrella is difficult. Whats on the other side of this disease must be beautiful for Him to be working on me so hard. As a friend emailed me after my last blog, "Do you want to be tupperware or fine china"....oh fine china please to be used at the Lords banquet table. Oh to be of use for Him. That's my hearts cry.

Black and White

noreply@blogger.com (Elizabeth Anne Saulnier) — Sat, 23 Oct 2010 04:08:00 +0000

I am in the valley, though I think valleys can be beautiful, but I'm not feeling "beautiful" the last couple days. At the moment my heart is breaking, grieving, questioning, hurting, exhausted, yearning, confused, and down right in need of renovation.

Last week my husband, two girls and I were blessed with 3 days to spend as a family away to a beach house in Matagorda. A family in our church will never know what they did for me and my family to allow us to stay at their beach house. The house backs up to the Colorado river and then about 2 miles down the road is the Gulf of Mexico and a public beach. In the process of getting away I realized just how heavy these last months have been. It was so nice to be freed from the heaviness for a couple days. It was such a blessing and so freeing to have a couple days where I didn't worry about how my inabilities affect my responsibilities. I didn't realize how much this weighed on me till we were down there and I was relieved of them. Obviously, this is not something put on me by someone else, so to say, but more something I put on myself, but again, didn't realize till I step away from it all.

My husband allowed me to sleep in each morning. He did all the cooking (he does most of it at home as well). We spent two nights at the beach as the sun went down. What therapy to watch my husband fish (something he loves to do and doesn't get to do it near enough) and watch my girls let loose and be fancy free as they kicked up their heels in the water, running back and forth on the beach. I can still hear their squeals. I was looking at some pictures I took and I giggled because Madilyn in 95% of them is a blur. She is constant motion. It was so good to see my family free from how my inabilities affect them. There was so much freedom in the 3 days. Free to just be without the stress of expectations, both imposed by others and self imposed.

There are no words to describe how therapeutic water is to me. There has always been something so peaceful, and calming. An ointment for the soul. The sound of the waves rolling and hitting the beach was addicting. The sound of fish surfacing in the Colorado river and the water lapping up around and against the docks. It is something so fresh, natural and untainted. I stood on the beach watching and listening and wishing I never had to leave. Wishing I could freeze frame the moment till I am well. I crave the water.

It was down at the beach house where I started to read another book by Elisabeth Elliot called "Keep a Quiet Heart". I wanted to just read and read it and be alone with it and what it had to say. Within the first pages I was able to pin down maybe a little of what I have been trying to figure out. Since August I have struggled internally and not understanding how I can go from being so peaceful and accepting of what has been to just feeling antsy. In reading this book the best I can do is say that before August I had a quiet heart and since August my heart has been beating loudly, and anxiously...not literally, just not being able to find a peaceful "rhythm" as I had before August. Why August? I don't know. Why the change? Don't have a clue, but I am feeling very restless in my heart. It is not at all at rest in God.

We came home Saturday afternoon hesitantly, wanting so badly to stay away. It was difficult to jump back into the swing of "life".

Yesterday I hit a brick wall and yesterdays Thursday was like day and night compared to last Thursday at the beach house.

Its weird because toward the end of the time with the IV I remember telling people that I had noticed that our bad days were decreasing and the not-so-bad days were out numbering the bad days. Then things seemed to change as if laughing at my silly observation. I had a string of weeks where I just didn't feel good. Then a couple okay days and then the weekend before last I was hit with a pretty challenging herx that really caught us off guard. It was at least half of what our very first herx reaction was. At this point in the journey they shouldn't be so strong according to science. My theory is, (I don't get paid very much for my theories) and it hit me after the last appointment and then after the last herx, that the IV treatment sent the bacteria into dormancy. I remember reading that when it feels "threatened" it goes into dormancy. During the IV treament we saw a huge decrease in symptoms, particularly the pain. When we switched off of the IV, we saw a resurgence of symptoms. The doctor said she felt the bacteria was coming out of the tissues...thus not feeling as threatened, and there is a whole new group of exposed bacteria being hit with 2 out of the 3 antibiotics. When the bacteria is in the tissues or in cyst form, it is very difficult, almost impossible to kill. It makes sense to my feeble green brain that these newly exposed bacteria were attacked and killed, thus the big herx. At least thats my theory and I am sticking to it. :-)

My days are, once again, filled with pain of some sort, and I just don't handle extended periods of pain. Short, hey this is going to hurt for a second kind of of pain, but not day after day after day pain. My legs have been the brunt of most of the pain. The calf muscles, particularly the right, seems to be consistently cramped. Both legs are extremely sensitive to the touch as if both legs are bruised up and down. The right leg feels as if there is a tendon or nerve not happy from my hip, down the back of the leg to my foot. They ache as if I run a marathon or work out with heavy weights every day. I cringe if the girls come close and finding a comfortable position is challenging. Crossing my legs in any fashion makes the cramping worse and if any part my legs is touch the chair or anything else it hurst. I have notices this with my arms as well, just not to the extend of my legs.

The headaches have increased and the sharp pains above the right ear are numerous throughout the day. It is usually left with a residual pain from the ear back and down the right side of the neck. My neck consistently feels like it needs to be popped and the shoulder muscles are back to never being happy. And this is just half of it.

Yesterday I had an extremely challenging day with the girls and school. I was under a time crunch (mistake number one) because we had plans to meet some friends at the park. Not getting anywhere with one child I buckled and lost it and I have been in a funk since. I wanted to call someone for help but, not wanting to be a burden or appear as if I don't have it all together, I mark off each person in my head. As a result, Chris gets the blunt of it all. He has a job and a ministry and he has to deal with a sick and can't-pull-it-together wife.

It basically boils down to this: I don't see how living a life where I am more a harm or burden can be the will of God. How can I possibly be doing any good for His kingdom? I feel the more I try, the more I fail. The more I try to be who God wants me to be, the more I am reminded that I'm not. The battle is exhausting. As I'm shown in the last couple days in reading this book, I am convicted of how much I complain, how often I am in a mood and I want so much for others to not have to deal with that. There is a struggle between being real and being a sour puss. I feel my husband would be freed up to be a pastor if I weren't around. I feel the girls would learn better and be happier if I weren't around. I wanted to leave. I wanted to "release" them and anyone else from me. It is very difficult to put into words but its basically a no good, tired of being a bump on a long feeling. About all I'm good for is sitting around playing brainless games on my phone. I wanted to give up. I'm tired of this song and dance, can't do it any more feeling. I am frustrated as I pray and pray, and numerous other people are praying and I don't see and feel His strength. I know I can't do it on what I have...I don't have anything left in me. I know my strength has to come from Him. He is my only answer to functioning at all, being at all and I just don't see it.

Today we get word that a friend of ours died in his sleep last night. He leaves behind a wife and 6 year old little girl who was Becka's first "best friend". He was a youth pastor and they are around our age. It has gripped me all day. My heart grieves, aches and is broken for this family. I know he is with God but the pain left behind is so great and my heart is screaming for those bearing his loss. I can't even imagine. Between yesterdays melt down and today, my heart is conflicted. So many questions running through it. It has deepened my funk, my fog, my just surviving to get through the day.

I'm sitting here tonight with the girls in bed and Chris at church with a youth event and I can't bring myself to do anything. I pick up the phone, play a couple mindless games and surf a little and before I know it I am listening to a song that I am supposed to sing in church in two weeks when Chris preaches. My heart just grabs on to the words. It is my hearts cry! Its what I yearn for....its what I was made for and even through this time of struggle when all I want to do is give up the fight I still feel my Lord reaching out for me and drawing me in and my soul can not deny the tie from my heart to God. And I cry some more. I want so badly to be able to sit at the piano and play and sing this song to my Lord and I cant. So torn between this world and my home....heaven, with my God, where all I want is to be at His feet. This drawing in, this yearning for Him, my heart cannot deny He exists and loves me. So why so down casted? Why can't my heart and mind find peace and solitude? I crave stillness and silence and this life offers very little of it. God's doing a make over and I may be fighting it, but all I know is that is pretty painful.

The Body is Weak and the Mind is Unwilling

noreply@blogger.com (Elizabeth Anne Saulnier) — Mon, 11 Oct 2010 03:19:00 +0000

Tonight I got more of a glimpse of what this disease has taken and I once again felt completely useless. Chris is preparing a message to preach in November. There is a song that would go perfectly (at least I think so) with his message. Its one of the songs I listened to this morning called The More I Seek You. We looked this afternoon for sheet music for it and all we could find was a pathetic rendition of it...really pathetic and nowhere near the original music. The original music is not at all that complicated. So, while Chris and the girls were at church tonight I decided I would sit down and dictate it. I have to work at it a little more then some, especially with a Lyme brain, but between listening to the song, my knowledge of music theory and picking notes out on the piano, I was piecing it together. Again, its not overly complicated because its basically broken chords. As I would get some dictated I would try to play it and was a little frustrated that I was having difficulty playing it. Keep in mind that I haven't touched the piano for at least 8 months and seriously for over a year and even then it wasn't what I used to be able to play. It had gotten to a point where I would sit down to play, hoping to enjoy it, and winding up frustrated that my hands wouldn't play like they used to...it just wasn't smooth. At the time I thought it was my hands declining.
I had worked tonight on it for a while when I decided I wanted to add the vocal line. Not knowing who would be singing it or playing it I knew it would be easier if the person playing could see the vocal line. The last couple times I had been on Finale (music scribing software) it had been messing up, locking up. I couldn't figure out how to easily add a vocal line, so I copied what I had dictated and opened a new document. Every time I went to set up a vocal line plus piano accompaniment part it would put the vocal line below the accompaniment. I finally figured out how to get the vocal line above the accompaniment (like its supposed to be), I went to paste what I had dictated and it wouldn't paste...it was gone. I was bummed but not discouraged...yet. I looked at the clock and all said and done I had used up an hour and didn't have another one to spare. I open a new document and began dictating again, thinking it won't take as long the second time around, especially as often as I had listened to the song to get the first dictation. But what I found discouraged me more then if my whole computer had crashed. It was if I had never dictated it the first time. I had no recall, not memory of what I had dictated the first time. I then began to get frustrated. I just don't have the time and energy to redo something like this. I don't like doing things twice as it is, but even more so now. I have to ration time and energy so badly now. Again, there was a mix of emotions because on one hand I had sat down and done something I hadn't done in quite some time. When I taught piano I would ask students what they wanted to play for recital and then I would arrange most of them to fit their level of skill. It felt good picking the song apart, looking at chords and dictating it. But, it was frustrating to see the decline in the way I processed the pitch and going back and forth between the recording and the dictation...I just couldn't retain it.
I was proud of what I had gotten done though I had nothing to show for it. But frustrated that an hour was gone and I needed to get dinner ready before the family got home and I don't get time alone where I can work on something like this. Maybe I shouldn't be doing it? I prayed and then I just sat there and listened to the song twice and sang to Him...at least I could do still do that...as far as I know I can...no one home to tell me stop because it sounded bad :-)
Even at this point I wasn't horribly discouraged. It wasn't till I got into the kitchen to fix dinner (rather warm up dinner) and one thing after another pointed to my inability to do things. I drop things left and right, I go to put something in the cupboard and jam my finger or thumb in the shelf because of poor eye/hand coordination, or I can't get something open, or its difficult to stir something. Here it is just a challenge to heat up left overs. And slowly I begin to feel useless. Chris and the girls come home and I am really discouraged. As I start to share with Chris what happened, only then do I start to put pieces of the puzzle together. I realize in talking with him that it wasn't my hands that made it difficult to play, though they didn't help with the pain and decline in agility, but it was my mind that was making it difficult to play. This discouraged me even further as I feel like an invalid. Can't keep house, can barely cook dinner (and God has prevented the house from being burned down or a finger cut off), and I'm seeing all that has been taken away. Things dearly loved....things I made a living by. Gifts and talents God gave me and I have struggled understanding why I can't do them anymore. As I'm spouting this off I remember my song from this morning....If you take it all away will my hands stay lifted and will my heart still sing. In my heart I say "yes" but it doesn't change the sadness and the grieving to see it go or change. Not liking the feeling that I'm not good for anything here on earth. I need help in every area. What good can I be for His kingdom like this? I lack the understanding but my heart will still sing and my hands will still stay lifted.
The sad part is everyone will most likely eventually go through what I am going through. Its called old age. I just get to experience it at 37. Stinky part is, if God does allow me to regain any of it back after the Lyme is in remission, I will lose it all again with old age. It really has been an eye opener for me these last months as to how it might feel to get old. From the time we are born we work to be independent and be useful and productive and at some point it peaks and we spend the last part declining. Depression sets in for so many aged people because they no longer sense they are needed, or productive. The very things the defined who they were no longer work and they are left just being if they don't find something else. As humans we don't handle "feeling useless" very well at all. Society doens't have a use for us and we are casted away in some form or fashion when we lose our usefulness. Where once our parents took care of us, we then take care of our parents. Honestly, I believe that getting old is the cruelest aspect of life. My mind ponders why it has to be this way. I'm waiting for God to show me the answer. I do find great peace, after losing whatever I may in this life, that I will end up in heaven where none of it will matter and I can sit at the feet of Jesus and bask in his glory all the rest of my days. I know I will have to share Him there as well (see previous blog :-) ) but I won't care because I will be in so much awe over Him. Some day.....

Church In Bed

noreply@blogger.com (Elizabeth Anne Saulnier) — Sun, 10 Oct 2010 16:18:00 +0000

Having been through a herx and not feeling well the last 4 days I struggled last night about church this morning. It was strange to have two sides in me. One wanting to go to church but not at my church and one that didn't want to stay home. I asked Chris, "Where does this leave me? My car?" When I look at what my body has been through the last 4 days I knew home in bed taking it easy and not pushing it was where I needed to be.

Last night Chris and I had a dinner to go to. Chris arranged a babysitter, a sweet lady from church. Since I didn't feel well, I stayed home. I told him to call the babysitter and let her know I was staying home and not to worry about coming but Chris said he wanted her to come anyway to help me out with the girls. Not having much strength to argue I subsided. But its weird having another adult in the house. My body is aching for bed and to stay down but when there is another adult, no matter the circumstance, it is very difficult for me to "rest" or stay in bed. I don't know if its the hostess thing or what it is. She mentioned twice she didn't feel like she did anything and yet, once again, she did. I mostly sat or layed on the couch with one of my kiddos while she made pizza with the other kiddo. After dinner she and I began talking. I realized last night that there is a strength in sharing what God has been doing. There is a strength when she shared things God has done in her life. While talking about the lessons, the experiences, the amazing love and blessings God has done I don't feel "sick". As soon as we stopped and returned "to earth" the "sick" feeling returned as well. I love sharing about what God has been doing with our family.

I'm reading a book by Elisabeth Elliot called Through Gates of Splendor and I am in awe and feel such conviction as I read the passion Jim Elliot had for God. It talks about how when he went to Wheaton College he feared being occupied by the "nonessentials" and miss the "essentials" of life. It made me think how easy it is to get "consumed" by the things of this world. Even the things we think are important or essential and missing what is really important. I didn't think I would like this book but I am drawn to the commitment, passion, drive to share God's love in the most extreme places. Some would say their job is the most important thing. Some would say football. Some would say __________. Funny how I don't see those things in the Bible. They are great and fun but not essential. So what is essential. If you are a Christian it should be Christ and Christ only.

This morning I lay in bed and I started out with several songs. One was:

The More I Seek You by Gateway Worship

The more I seek You

The more I find You

The more I love You

I want to sit at your feet

Drink from the cup in your hand

Lay back against you and breathe

Feel your heartbeat

This love is so deep

Its more than I can stand

I melt in your peace

Its overwhelming

This song moves me so much and my soul joins in and sings it out to Him.

The other songs was:

Captivate Us by Watermark

Your face is beautiful

And Your eyes are like the stars.

Your gentle hands have healing

There inside the scars.

Your loving arms they draw me near

And You smile it brings me peace.

Draw me closer oh my Lord,

Draw me closer Lord to thee.

And captivate us, Lord Jesus

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing River,

Draw us nearer.

Holy fountain consume us with you.

Captivate us, Lord Jesus, with You.

Your voice is powerful,

And Your words are radiant bright.

In Your breath and shadow,

I will come close and abide.

You whisper love and life divine,

And your fellowship is free

Draw me closer, oh my Lord.

Draw me closer Lord to thee.

And captivate us, Lord Jesus

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing River, draw us nearer.

Holy fountain consume us with You.

Captivate us, Lord Jesus, with You.

And let everything be lost in the shadow,

Of the light of Your face.

And let every chain,

Be broken from me,

As I'm bound in Your grace.

For Your yoke is easy,

Your burden is light.

Your full of wisdom, power and might,

And every eye, will see You.

Captivate us, Lord Jesus,

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing river, draw us nearer,

Holy fountain consume us with You.

Captivate us, Lord Jesus, with You.

Another one of my favorites is I'm Still Yours by Kutless:

If You washed away my vanity

If You took away my words

If all my world was swept away

Would You be enough for me?

Would my beating heart still sing?

If I lost it all

Would my hands stay lifted

To the God who gives and takes away?

If You take it all

This life You've given

Still my heart will sing to you.

When my life is not what I expected

The plans I made have failed

When there's nothing left

To steal me away

Will You be enough for me?

Will my broken heart still sing?

If I lost it all

Would my hands stay lifted

To the God who gives and takes away?

If You take it all

This life You've given

Still my heart will sing to you.

Even if You take it all away

You'll never let me go

Take it all away

I still know

That I'm Yours

That I'm still Yours

I'm Yours

I'm still Yours!

I'm still Yours.

I then shuffled through the ipod and didn't see or feel any other songs pull on my heart so I set it on Jim Brickman's Faith cd and put it aside while it played in the background. I opened a devotional book I have called Reaching Forward by Gary Henry. This book has encouraged me like no other and has really spoken to me where I'm at.

I like to open to the date and look at the key scripture. I then like to open my parallel bible and read that passage in four translations. I then look at the scripture as printed at the top of the page in the devotional which is usually different translation. Today's, as usual, hit me where I'm at, where God has been nudging me, tugging on me, chipping away and trying to mold me. Today's reading talked about how our freedom has responsibility. Aw! I remember thinking about how with freedom comes responsibility earlier this year (sometime since April). One sentence that stuck out to me was, "And just as they did not see fit to acknowledge God any longer..." (Romans 1:28). Wow! I can't imagine and yet does this happen gradually as we allow the things of this earth to take on more importance then our faith and knowledge of God?

It goes on to explain that God finally gave them over to their world passions. "In effect, God withdrew His restraining hand and let them plunge to the depths of their desired rebellion." Even from my early days as a Christian, I remember reading about another scripture in the Old Testament that talked about how God turned His back on them. I remember thinking, and still do, how awful this would be. This would be worse then anything that could possibly happen to me in life. I have prayed that God would never "give up" on me and I thank Him that I feel His hands on my life and that He loves me as much as He does despite who I am and that He would find joy in disciplining me and not just leaving me where He found me.

I went on to tomorrow's devotional and it talked about hope. Yes, this has been a recurring word and lesson as I figure out where my hope lies. The scripture passage is Acts 27:20 and it says, "since neither sun nor stars appeared for many days, and no small storm was assailing us, from then on all hope of our being saved was gradually abandoned." Even reading that my heart sinks and aches. To lose hope, all hope. Gary Henry begins the devotional by saying, "The only hope that we really have is the hope of God's grace and forgiveness. Whatever other hopes we may have are little more then dust and ashes if we fail to find salvation and eternal life in Him." So true. And this is true as I go through this disease. I've learned not to hang my hope on what scientifical research says things should be. I've learned not to hang my hope on lab results, or time tables, or doctor's words, etc. All these things are man made things and man is fallible, untrustworthy, unreliable, and will one day be blown away as dust and ashes. My hope is in God, who will forever be and is forever in control of everything else. This is challenged, especially the weeks leading up to the last lab tests/results. There was an anxiousness I did like and cannot explain. If only my eyes would stay heavenward and not downcast.

I love how Gary Henry reminds us that, "The need for God is planted deep within us, having been put there by our Creator, but we often deny that need and expand our energies on so frantically in the pursuit of other needs that we forget about our need for God, at least for all practical purposes." I think of the people I know that live such busy lives. "To busy" for this and "to busy" for that. I was once on that path. It still calls my name and I feel the urge to "be busy" because then I feel useful and productive. But in the pursuit of wanting to be useful and productive I lose sight of the one need that will fulfill all others....my need for communing with God, to bask in His presence, and be reminded of His love and promises. No other "pursuit" or "accomplishment" or "business" can supply the security, comfort, and most of all peace like being still and being in His presence. I wonder why it is so difficult for most of us to be still, why we have to constantly be striving for something, never really feeling fulfilled in any of our own endeavors.

Even being slowed down by Lyme I find it difficult to be still both with God and for the sake of my health. Its not easy especially when we live in a world that gets faster and faster and expects us to keep up or be "voted" off. Survival of the fittest. And we live in a world that expects instantaneous results with microwaves and phones that do everything at our fingertips and we get frustrated when it things don't "download" fast enough. Reminds me of the playground the thing that went round and round. The faster it went the more difficult it was to hang on...sometimes you fell off because you couldn't keep a grasp of the medal bar and/or because it was so crowded.

If I had to choose to go back to being busy life, (striving to accomplish to be useful and productive, running around with my head cut off, too busy for any relationship except the ones that helped in my hecticness), and the life I am currently living with Lyme disease where things are slower but not by choice,....I choose to live green! Its not easy being green, as quoted by a beloved frog, but in this slowere pace of things I am able to see that the only thing that will fill my needs is God and I yearn to seek Him, live for Him, and know Him more. Its all that matters in this life that He gave me. So much easier said then done but easier to realize and aim for when things are not on the merry-go-round going hundred miles an hour out of control. I am thankful for a disease that allowed me the time to realize and learn the things God has shown me. I am thankful that I have a God that doesn't leave me the way He found me. I am thankful that He is still working on me....in so many ways. Church in bed...its a wonderful thing.

Herxing

noreply@blogger.com (Elizabeth Anne Saulnier) — Sat, 09 Oct 2010 01:36:00 +0000

Saturday night I didn't feel well but Sunday wasn't too bad. Monday I didn't feel great and then it went down hill from there. Wednesday, I didn't feel well and was beating myself up for it until I woke up from nap time and my back was killing me. Then it hit me....this is a herx. Yesterday found myself in bed all day and today has been worse. The pain is incredible and the really stinky thing about a herx is the pain responds to very little and its very difficult to sleep, though all you can do is lay in bed. Today it was very difficult to find a position where there wasn't something screaming at me. Almost every major joint is mad and I'm begging to be put out until its over. Yesterday I was able to take a Soma and sleep the entire day. Not so today. I layed in bed hour on hour and every little noise sends the body jumping as if someone jumped out from behind a corner and said, "boo". Of course, then, I have to start all over in trying to sleep. I tried a pain med hoping it would relieve some of the pain and knock me out. Nope. So, then I asked Chris for a Soma in hopes it would knock me out again like yesterday. Nope. It brings a new meaning and understanding to "bump on a log"....literally.
It has been a while since I have had a herx this rough. I am hoping today was the peak of it and tomorrow will bring relief. If not, tomorrow will be worse...at least that has been the track records of my herxes.
It has been frustrating because I didn't feel well for several weeks and then I had a couple days where it wasn't so bad. I try to catch up on things but before I get completely caught up I am knocked back down. Its that, one step forward and two steps back feeling. I worry about Chris and his work because people truly do not understand, especially when I was in church on Sunday and I "look good". I have found myself completely frustrated by the lack of understanding and desire to understand or make any effort to understand by family, friends and otherwise. There are those that just don't care anymore because this has carried on past their timetable. There are those that expect me to make all the effort to keep peace and do and act and function as a normal person and yet I can't. Just this week I was hurt when asked what a herx is and by another that laughed when I mentioned trying to be good by taking naps. I don't talk to many, and I share with even less the things that mean something, so its not as if I share everything with everyone. But with very few do I mention certain things thinking that they will support us and it hurts when the above happens.
I will cling to my God who does not judge and criticize me, but who cares deeply and is with me at all times. I will be thankful that I have a husband that loves me (I have yet to figure that out) and has stuck by me through all this. I prayed in college that God would show me His unconditional love that I hear people talk of and He put Chris in my life. Chris has loved me unconditionally with no strings attached. I am blessed with two beautiful girls that amaze me day in and day out. I am blessed to watch them grow and learn and play together and am blessed that God has called us to homeschool (though I don't understand why). I wouldn't trade that time for the world. Chris and I figured out one night that because I homeschool, that the hours I get with them where they would normally be in school with someone else, equals to 90 extra days a year. I get 3 months extra with my girls that a typical mom does not. There are days where I am pulling my hair out but I still wouldn't trade them for the world. So, I find myself being very thankful for the family I have living inside these walls when the rest of the world is being fickle outside these walls. I am thankful that peace, love and comfort reign inside these walls. I am thankful that God has kept us together and has kept 3 out 4 healthy and strong and that the one battling a disease He has been so gracious as to allow her to feel well enough to enjoy her family and homeschool her girls. God's blessings reign and I will look to them when all else is crazy and when others don't understand. At least I understand that I may never understand what all is going on but I do know and grow in understanding the One who understands all and still loves me. May He somehow be glorified in some way through any part of this Lyme green mess.

Heavy Heart

noreply@blogger.com (Elizabeth Anne Saulnier) — Sat, 09 Oct 2010 00:59:00 +0000

Sunday, October 3, 2010

My heart is heavy today full of questions and thoughts. One thought that came today while in church is that I am dry and am in need of water. I am in need of encouragement for sure. I'm sure this goes along with "need a break" in some way but when that can't happen right away what do you do?

The last 3 weeks have been challenging health wise in not feeling well. The constant roller coaster leaves me struggling emotionally. I am so thankful for the days I don't feel as bad. Yesterday was one of those and after 3 weekends of being down and able to go to church, I felt encouraged that I felt as well as I did. But the brain interprets that as, "you're getting better" aka the bad days are behind you. Then I have a challenging day and I feel knocked down again. Most diseases and illnesses have a gradual get better when they are healing but not Lyme. It stays true to its track record and is difficult in that process as well.

Today my heart is heavy in trying to be obedient to God and feeling like the more I am obedient the tougher life gets. Chris and I made a decision out of obedience and it has had a rippling effect with other people and not in a good way. It is not easy, and it will never be easy, to be obedient to God because God is not of this world and, therefore, what He asks us to do will seem "crazy" in the world's standards and most times feels impossible to follow through on. What prevents me from obeying is that I am more concerned what other people will think. I don't like going against the grain, so to say. I like being peaceful and honestly would prefer to be quiet and invisible so as to not cause any ripples. However, being a Christian we are called to be different and are told that we are not of this world, that this world is not our home, that we are foreigners in this place. Our true home is heaven.

I have never felt more a foreigner then I have in the last 18 months. The tough thing is I feel more a foreigner in my own family (those outside my house) and my church then anywhere else. Maybe because thats where I am mostly judged and misunderstood ironically.

I felt pretty good yesterday, getting three weeks of clothes put away but then I was wiped out. We had a special dinner last night where we honor the widows in our church. I was nervous going. I don't like these social atmospheres due to the decline in my mind. I don't remember things, and I don't process well and so I usually end up looking like a baffling idiot and offending someone with my blank looks or lack or remembering something. I also needed to talk to someone who had been offended in our act of obedience to God. Its also in these situations where people ask questions that wouldn't normally ask questions, and the last thing I felt like talking about was Lyme. The night was about our widows and not me. In a whole, the evening went okay but about half way through I started feeling bad, crashing. By the time we got home, a mere 8:30, I was done. I felt horrible, having 3 head episodes in a row and feeling frustrated because I wanted to go to church, having not been there the last 3 weeks.

But this morning came and by the time I got to church with the girls, all I wanted to do was go home. I had a conversation with a church member that didn't turn out pleasant due to miscommunication and by the time I got down to the youth room I was emotionally fragile, just wanting to go home and bask in God's presence by myself. We had missionary partners speaking today and I wanted to listen but I also wanted to just go home. I was afraid if anyone asked, "how are you doing?" I would fall apart and that just wouldn't do. I already feel that several hold opinions of me based off of what they have heard from others and not based off of true investment of me and my family. Me breaking down would just add another dart to the "Elizabeth is weird" dart board. This morning I felt like no matter what I do or don't do I can't win. I try to just be me but its met with critical eyes. The frustrating thing is that this church, these people, have only seen the "sick" me and unfortunately, the sickest me. Unless they have taken the time to get to know us, and few have reached beyond the superficial, they don't know the true us beyond the Lyme green layer. This hurts tremendously. I guess the reason it hurts so badly is because I came to Simonton with high hopes of getting involved, serving, and building new relationships and anything but has happened. My plan didn't happen and I struggle in seeing where God's plan is better.

So, I sat there this morning listening to this 17 year old talk of being a missionary's daughter and growing up as one in Venezuela and I was floored by her confidence and her ability to put into words her relationship with God. She brought up a verse in Matthew about being the salt of the earth if that salt loses its flavor and I was hit with overwhelming feelings as my heart cried out to God telling Him that I felt like salt that had lost its flavor and had been cast off to the left, useless. I just don't see how where I am is useful at all. How does where I am at right now glorify Him, and do anything for His kindgdom? I feel a tug to get up and go home as my eyes fill up and I don't want anyone to see me "lose it". After sunday school I go to pick up my girls and I never make it to their room as I am stopped by a couple women. I am torn between wanting to pick up my girls and get to church on time (I hate my girls being the last ones picked up or when they are and the teachers have to bring them out so they can go to church) and being a listening ear. I feel torn because in my effort to be caring I am interpreted as being nosy and yet if I don't ask how others are doing, I will never find out and I am interpreted as being selfish and self centered. Again, no win either way.

The girls and I are late to church. I'm thankful that the front row is taken (where Becka and Maddie always want to sit...I would in any other church but not here as a pastor's wife) but I couldn't see where we could just sneak in and sit down without being noticed. We find a place in the middle of a row and wouldn't you know between girls that need to go potty (I should have taken them before going into the service) and going up front for something as a family and for something else I don't remember, we had to ask this poor lady and her children 3 times to excuse us. Not my idea of being invisible. All through the service I hear our pastor talking about obedience and I'm having conversation after conversation with God about why, after its been preached about for weeks now (and I hadn't been there) were people having such a difficult time when our family makes a decision out of obedience?

By the time we got home I was exhausted. Bless my poor husband as he comes in the door. He caringly takes off his tie and sits down by me and allows me to ball and vent my feelings.

I came to the realization today that church has changed for me and it saddens me. I have never, in my entire Christian years, not wanted to go to church but today I fought not wanting to be at church. I wanted to be home where I can sing my praise songs and people don't stare at me or turn around to see who is singing, and I can bask in God's word without a distraction....and all done in my pj's. Today I wanted God all to myself. I didn't want to share Him with anyone and I just wanted to be invisible. I will say that since April I have been moved at church by the spirit which always results in crying as I am moved so deeply by what He is doing in my life. I so don't like others seeing me cry because its always intrepreted in other ways. This morning I was burdened with a continuous thought of, "what if I want them to see you break down and cry? Maybe then others will open up and be real as well." and I picture that dart board with more darts then it can hold and I begin to plead with God to "send" someone else. I struggle being a pastor's wife. There is a bubble whether I want it to exist or not. I don't say that because I am conceited or self centered. I truly would rather be invisible. But the fact is, if I'm gone they notice and if I'm there they notice, and the Lyme disease makes it even more so. If Chris weren't a pastor and I wasn't sick, I think I could go and not be noticed as much. I am very uncomfortable in the clothes God has on me right now.

Doctor's Appointment

noreply@blogger.com (Elizabeth Anne Saulnier) — Wed, 29 Sep 2010 19:17:00 +0000

The weather here in Texas (at least southern Texas) has been absolutely beautiful! So beautiful that the snakes are coming indoors and we are going outdoors. Okay, seriously, it was one snake and it did "kick us out" of the house till Daddy came rushing home on his black stallion (aka honda) to save the day. All before 10:00 this morning. Actually, I think the nice weather caused the business next to us to finally weed eat their property (and they started kindly before 7 this morning...still going and its 1:30...they did pause for lunch ..generous...keep in mind to most this isn't a big deal but the non stop sound grates on my nerves) which chased the snakes to our leased acre, and one found its way inside our house, which chased us out, brought daddy home and the thing found its head crushed. We just finished studying the Fall in the Garden in Bible and History and we recounted the "serpent" in the story as we peered through the door window at the snake in the house, waiting for daddy to come save us. I love the country but I am a city girl through and through unfortunately. I believe that the inside of my house should be my "sanctuary" which means no none humans please.
Whew!!! Still beautiful outside!
Mondays appointment with the doc went well. I left the appoitment encouraged. We went in with questions (as always) and came out with answers. About a week ago I began compiling a list of the returning symptoms knowing if asked "what symptoms" I woudn't be able to recall on the spot. I was amazed at a page long list of symptoms. I did notice that most of the symptoms that have gotten worse are neurological in nature. I copied the list and gave the doc a copy. She examined it pretty thoroughly and didn't seem surprised by it. It was explained to us that, yes, the Lyme test was negative on both parts but that the top wouldn't remain negative in the future and that it would be positive for the rest of my life. I understood it correctly then, and I chalk up the top being negative to the fallicy of the test. It is not a 100% sure proof test. She said that the flare up of symptoms is most likely due to the bacteria coming out of the tissues, or cyst form, which is a good thing. The bacteria can "hide" in the cyst form and very little touches it. The Flagyl that I am on during the weekend is suppose to target the cyst form. She did ask if the weekends appeared to be rougher and I said yes. As far as the 3 antibiotics, she doesn't want to change anything up since its still showing signs of effectiveness. We did ask about some of the other meds and found out that, after 9 months of taking it, that I didn't need to take the Cyclobenzaprine which is a muscle relaxer, every night. So, I haven't taken it the last two nights and I feel more clear headed during the day. My only concern is in a week or two when its out of my system what the muscle cramping will be like. I have been taking a powder called Reliv that a lady at church gave me to try. It has all kinds of vitamins, etc. I think I have seen a small difference in the muscle cramping when I take it daily...literally. If I miss a day the calf muscle in the right leg cramps. Ah, I just remembered a question we meant to ask and I don't think we did. If we did, I don't remember the answer. The question being is it typical for most of the symptoms to be on one side?
We did bring up the new symptom which was the sharp pain above the right ear and she looked in my ears (yes, the doc actually got out her stethoscope and examined me...first time I think...of course this was after Chris asked the Assistant if this was normal for her) and she said the right ear wasn't infected but it was "caved in", if I remember correctly. She looked at the left ear and said it looked worse and asked to clarify which side I had the shooting pains. She asked if I take anything for allergies and I mentioned I may have some of my nasal sprays left from last year and she said, no, and gave me a 10 day supply of Xyzla. Not sure what we are supposed to do after 10 days, Today is day 3 and I really don't notice a difference in the allergy symptoms of drainage but the head episodes have been fewer. We'll see what happens.
The shoulder was brought up again, and for some reason it caught the assistants attention this time, where it really didn't peak the doc's interest last time. We again, explained that I had xrays and MRIs on both shoulders last spring that showed bone on bone in both shoulders equally. This is what tipped docs off that this thing was systemic and not just my right hand. The assistant began collecting information and requesting those reports while we were seeing the doc. We didn't hear anything before we left and haven't heard anything since and probably won't until I call several times to inquire....just seems to be the track record.
I really liked how the doc was being proactive with the allergy stuff and also in giving a flu shot, trying to give my body every chance it has to feel good, especially since the immune system is not up to par. Our next visit is Nov. 1st. We did not walk out of the office with lab requests like we did last time. It may have gotten lost in their quest for MRI reports. Not sure.
I think that is all I remember. We had a pretty good day of school yesterday which made me think maybe we had turned a corner and have began to find a routine and groove. But, today was back to "rough" but the snake didn't help matters any.
We had an answer to prayer Monday after the doctors appointment. Our AC has gone out twice. The first time it went out we were told we needed a whole new system, with duct work, etc. Yeah, we knew what the landlord would probably say on that. The second time it went out the AC people said the same thing. By this time we were frustrated with super high electric bills knowing it would probably be cheaper with a newer unit but there wasn't anything we could do but pray, and pray we did. Sunday, it ran all day and it was cooler outside then inside...go figure. Then Monday we got the call that they will be replacing the AC unit and they are scheduled to come tomorrow. Such an answer to prayer. Between a new unit and the gorgeous weather (minus snakes, hopefully) we are hoping for lower electric bills which would help so much financially.
Just can't beat the weather we've been having. The girls have been outside playing. Funny how they will tolerate bugs better when its cooler outside. Unfortunately, the bugs still love them.
Today is Wednesday and its our busiest day. Get through Wednesday and its home free till next Wednesday. I am staying on top of my naps, especially as I get in snuggle time with the girls. I nap with Maddie on Monday's and Becka on Tuesday. Wednesday I don't get one and Thursday and Friday everyone is on their own....sometimes. I'm trying to turn the lights off at 10:30 and eat what I supposed to. All in effort to push through and come out on the other side of this lyme colored phase of life. Taking it one step at a time and only by the grace of God.

Befuddled

noreply@blogger.com (Elizabeth Anne Saulnier) — Thu, 23 Sep 2010 01:19:00 +0000

I picked this word up in the books I am reading where the main characters are Amish. I just got home after doing school with the girls all morning, running Becka to gymnastics and then running her to church for kids praise, and I just slammed down some dinner. Actually fixing dinner for myself is some progress, sadly enough, but it wasn't Lyme/food sensitivity proof so I can't fully pat myself on the back :-)

Wednesdays are our busiest day for everyone in the household. We have now been doing school for a week. Monday, I was ready to put the girls in the private school at our church. In my heart I know we are supposed to be homeschooling but it doesn't mean we don't have days like Monday where I just don't feel I can make it to the end of the school year without some massive psychological damage done to all involved. I am so blessed, let me repeat, I am so blessed that I have a husband that listens patiently. I could not do anything right now if it weren't for him. We seem to be clinging to each other right now, each for different things. Hmmmm, I believe there is a verse in Genesis about a man clinging to his wife....anyway. I am way off.

Saturday or Sunday, being bored, because I felt pretty crummy but couldn't sleep which equals bump-on-a-log, I called the patient response service to check if blood work results were in. I didn't expect them to be honestly, knowing they take a week, but I got even more discouraged when I heard, "no match found...". Wow! Wasn't expecting that. "Already kicked out of the system" was how my brain interpreted that. With the problems we have had in the past with my patient id number I figured we would have to wait till Monday when we see the doctor to get the results. This frustrated me a tad and then I thought, "do you really want to know the results just so you can stew over them till Monday?" Good point....hhhmmm maybe not. I have called everyday since. :)

So, I was slamming my dinner down, playing Words With Friends while I did, and thought I would call. I was caught completely off guard when it said, "One new message". You're kidding. I laugh as I think of the many times I have not pushed "#" after my number and there is this long pause instead of the voice saying, "No match found..." and I start to get excited that there might be a message....then I realize I haven't pushed "#". Elation spirals downward as I hear, "no match found"....can you hear Charlie Brown when he would do his little sound of frustration? (I don't know how to spell that sound or I would put it here).

The doctor said my name..."yup, thats me", ...don't laugh. We have gotten Harry's results in the past. Sometimes she doesn't say a name and you really wonder whose results those are. "CD-57 is a 46 and we want it to be 180 before we consider you done with the Lymes and your Lyme test was negative for both the IGG and the IGM bands...." Befuddled!!! Have you ever felt frustration at the same time as some other feeling that is somewhere between proud, excited, "cool", etc....I'm not sure what feeling it is. In some way I am excited we made progress on the CD-57 (proud and excited) but I am confused on the Lyme test and why I have felt so horrible, particularly this last week and a half, and just yucky with the return of symptoms since the IV came out. So, my word is "befuddled". It just fits. Why am I confused? I would be really impressed if you caught what I caught with the results. It would tell me that you are really up with the blog and what has been going on and understand some of it. We had been under the impression that we were aiming for negative bands for both IGG and IGM until our last visit where the doc explained that the IGG will always be positive, like always testing positive for mono after you have had it. She said we were aiming for no positive bands on the IGM part of the test, twice in a row. We reached that the blood work before this set of results and this frustrated me because symptoms have come back with a vengence since then. Now you tell me there are NO positive bands whatsoever on the test. I am so confused. So, on one hand I'm thrilled the CD-57 went up (though, again, she had hoped for better and we had too...sort of..better accompanied by feeling better) but confused why all the negative bands and still feeling crummy.

There is no possible way to put into words the emotions that have raged through me since the IV came out. I had higher hopes for this point in treatment. I recognize then that this means my hope was misplaced. Hope placed anywhere other than on God will always be doused and let down. Sometimes I think I don't realize I have put my hope somewhere else till its let down. This further compounds the feelings. I want so badly to have months where I feel good and don't hurt and have energy to keep up with my children, particularly one precious little jumping chatter box. I believe God told us to homeschool (and we both still believe He is saying to), and I believe He showed me what curriculum to use (which requires much out of me both in preparing and executing it...with two in two different grades) so why the resurgence of symptoms where I am in pain daily, can't think clearly (which confuses them and frustrates me) and leaves me with even less energy? My hope for true remission, as defined by me as being symptom free, are gone, and replaced with doubt and thoughts that I should accept how I feel because it is how I will be from here on out. I am 37 years old and I look normal but I slur my speech, stutter sometimes, can't process information, can't remember things, have to have someone else cut my meat up for me because I don't have the strength, lack eye and hand coordination, twitch, have no energy, my hands hurt if I do use them, a shoulder that screams when I remotely use it, calf muscle that cramp, headaches daily with piercing pain that shoots through one side, loss of strength, tender to the touch on my arms and legs, and the list goes on. I know you are saying, "it happens to me all the time" or "it happens to the best of us" or "I do that all the time". If this is normal, which based on these comments people are telling me that I shouldn't be concerned, then I have the wrong expectations for how a 37 year old female should be physically! I feel trapped in a 95 year old body and some 95 year old people feel better then I do most days. Seriously! But, then again, I have to remind myself that the problem isn't how I feel or the inconsistencies in test results or doctors comments but in the worldly expectation and scientific definitions of how a 37 year old female should be. Worldly expectations, the things the world tells us should happen or the way the world says we should be, as well as the scientific definitions are all fallible. I should be looking to God for how things should be on a daily basis. Looking to God for my daily expectations and accepting whatever He says is to be for this 37 year old body. This is difficult for me to swallow. Has my hope not truly been in Him these last couple months like I have professed it to be? Is my relationship with Him more hollow then I thought it was, lacking any true substance? I desire and yearn to strive only for Him, to live only for Him but are those hollow words if I only mean them on my terms (aka feeling well)?

I feel I have been "fake" in some sense with my blog in the last couple months because initially I meant to "be honest" and yet the last couple months there are things I have felt I can't express on here and in some essence this may have contributed to the fewer blogs. I don't know. I don't believe anything good ever comes out of secrets...ever. And by not sharing some things I feel I have had a secret or have kept a secret, and yet I don't know that everyone needs to know everything.....befuddled. Some of it is due to fear of what people would think. What if I "share" that on my blog and I'm mocked at, judged, and yet I don't have to say anything or do anything and I will be mocked or judged by someone somewhere. Do I have enough determination to live only for Him, according to His standards and expectations, daily placing this life that is not my own in His hands for Him to do what He chooses to do with it, forsaking all else, even myself? Something I have been juggling with since the IV was taken out, and the symptoms returned. Its easy to says yes when I falsely put my hope in something else, but when that something else fails I realize just how hollow I am, shallow, selfish. Its funny, because these blogs never turn out the way I initially think they will when I start typing. I never intended to get so philosophical tonight with this entry. I am my father's child......but I am also my Father's child. Sometimes I think He intended these blogs to be communication between me and Him. To everyone else they are ramblings and I appear in left field and crazy but to my Father I am precious. Difficult to grasp most of the time. I have got to clean out the worldly expectations that the world has brain washed me with and download and install God's expectations and then I should run more smoothly,where I am running off of a focus solely on Him and what He thinks and not on the fears of this world and what they think. Befuddled....still working on that.

I May Appear Normal.....

noreply@blogger.com (Elizabeth Anne Saulnier) — Thu, 16 Sep 2010 02:51:00 +0000

Is anyone really "normal"? I may appear normal on the outside but I'm anything but normal on the inside. The last three weeks have been frustrating, discouraging and an emotional rollercoaster. As more people comment on how good I look I am constantly reminded throughout the day that I am still Lyme Green on the inside. I'm glad I can look good while I feel crummy...surely that has to be a talent, right? Nope! Its God's handy work of grace painted all over the outside of me. I'm glad I look good. I wouldn't want to look bad or droopy or morbid or something. But at the same time it has been down right frustrating. This August and September have been very difficult emotionally as Fall draws near and all the stuff that goes with it starts up. I more often then none feel as if the world is spinning on without me as bible studies start along with other activities at church that I love to be a part of and I'm not. I think I also had high expectations for "August" on how I would feel after 8 months of "treatment" and I don't feel a whole lot better then this time last year. I also feel the weight of others expectations on me as well as my own which don't fall short of perfection. I feel I am back at square one as if I never learned what I God showed me and taught me in the last 6 months. How can I possibly go from being positive and content to struggling so badly?
Since the midline was taken out I feel I have been running non stop, especially these last 3 weeks as I have been trying to get stuff ready for school. But I have also found in the last 3 weeks that I want to just climb in my hole and be by myself. Not at all how I originally wanted to spend the last summer days with the girls. There has been a return of most symptoms and full force, and new symptoms have shown up, so I am back to day after day of pain and discomfort. My calf muscle was cramping so bad my mind searched itself for what I could possibly take to get some relief. All this combined with being fully responsible for the house again and I have felt extremely overwhelmed, incompetent, and incapable. So, when people say I look good on the outside I get confused because all I can see is the mess on the inside (there is a sermon in that somewhere :-) , as we say in our house).
I had blood work done today to check levels and even now that it is done I feel anxious about them and I don't know why. There are several other things going on that contribute to all this and I just don't feel I can get my head above water.
I see a counselor about once a month and I was anxious to see her this week to process all this and figure out what is going on so I can snap out of it. I completely lost it with her and then I heard her say, "I think you are just plain exhausted. You need a break. You need to get away." I felt so stupid (yes, the "s" word we aren't supposed to say in our house) because I processed those words and went, "duh!!!" that is totally it. I have drilled myself into the ground, trying to do everything, not going to bed when I should, or eat the right things, and I just keep saying, "just one more thing", or "I'll just do this one more thing". I'm already feeling bad and I don't see a big enough improvement to positively reinforce getting rest so I figure I'm just going to feel bad anyway, why not keep going. My body hasn't had a chance to fight, especially when its down to begin with. The mind just never shuts off and I barely allow the body to be still. Oh, the peace of the days where the mind was quiet and the body was still. It had to be. The days I had help and the midline forced me to prioritize and basically it meant I hung with my girls because they were priority. The last couple days (Sunday and Monday) were pretty bad with sore throat and drainage and feeling sick on top of sick. It was scary because I'm thinking, "what can they give me to help me get over this because I'm already on 3 antibiotics. How many antibiotics can a person be on?" I never dreamed a person could be on 2 at the same time much less 3, and all my other meds. Today we started school and it was a challenge but God gave me exactly what I needed to function. It wasn't the best first day but we made it through and tomorrow is another day. I will think about what we didn't do well and try again tomorrow. I just hate that it takes me ten times longer to do things, and I can't multi task, and I'm trying to teach my 6 and 4 year old when I feel I have the brain of a 2 or 3 year old. I is excruciatingly frustrating to not be able to do what you used to be able to do quite well. My biggest fear right now is that all tests will show remission to the doctor's standards and I still feel like I do today with no answers. What if God's will is for me to stay like this? Having had a couple months where I didn't hurt all the time, that thought is difficult to swallow. It makes me question where my hope is placed. The world says that at the age of 37 I shouldn't be like this...that I should be more functional and yet I know I wouldn't be able to hold down a job right now if I wanted to due to physical and mental inabilities. When the midline was in I didn't look normal and normal wasn't expected out of me. Now, the midline is out and I look normal and everyone expects me to function at 100% and I can't. Its difficult to convince my head of this as well. I just want to function as a wife and mom, better then I have in the last 2 years. But what if God has a different plan?

Grief and Joy Simultaneously

noreply@blogger.com (Elizabeth Anne Saulnier) — Wed, 01 Sep 2010 16:56:00 +0000

Its been a while since I have blogged. In some way the reasons are good and in others they are not. Basically it comes down to this: Without an IV in my arm to slow me down, I am up and at 'em doing, usually too much to the detrement of the body. There are things to be done, always. and unless I just feel bed ridden horrible I am trying to get things done. Lately, the last 3 weeks have been spent mainly getting ready for the girls to start school. We had originally planned to start August 23rd but that didn't happen. Chris felt we should post pone it till the following week. The weekend before August 23rd I was in bed most the weekend, and ended the weekend having 42+ youth at the house for waffles and bacon and swimming. I had 3 wonderful ladies helping me with 4 griddles, and 4 waffle irons and we blew the fuse at least 5 times as we cooked 9 pounds of bacon and 1 3/4 boxes of bisquick for waffles. It was awesome! After the bacon fog cleared I was happy and very accepting of us not starting school the following day. As last week progressed I also realized I was as ready to start school as I wanted to be. We were missing a couple important items. I enjoyed another summer week without the rigid schedule of school.

This last weekend was a good weekend. Saturday we got a lot accomplished with the house...things that have needed to be done since we moved in. To those on the outside it may have looked fine and settled but as a woman there were definitely some unsettled things. I don't know how to be still, which scares me. I learned a lot in my 3-4 months of having to be still. I don't want to forget what I learned and return so quickly to running around with my head cut off missing the important things of life. Granted, "running around with my head cut off" looks a little different from what it was last Fall but the concept is the same.

Today I am feeling extremely run down but at no surprise with how I have been "busy" with stuff. It takes longer to get things done due to my energy but I do enjoy the feeling of accomplishment and productiveness. I came to the realization today that as long as I am moving my mind is off of how I really feel. The minute I sit down I am all too aware of how my body hurts and is lacking the energy I am requiring of it. I have been discouraged, frustrated and worry and fear have crept in this last month. Symptoms we had before seeing Dr. Kolodjski last November have returned. This means that there is not a day I am not in some type of pain. From about February to the end of July I was practically pain free except when going through a herx. When the IV was removed these symptoms returned. The headaches, stomach distrubances, shoulder and hip and hand pain and the cramping of muslces. Most of the pain and cramping is on the right side of the body but the left chimes in as well. It is weird to be standing at the mirror blowing drying my hair and my right big toe cramps...just the big toe....the whole toe. It feels different from a toe cramp, though that won't make sense to most. When I am sitting or laying down, everything just gets stiff and the initial movements are quite uncomfortable.

The resurgance of these symptoms has been on top of the daily symptoms that have persisted such as memory, foggy brain, weakness, slurred and/or stuttered speech, shedding of hair, and no energy.

Its August, approximately 8 months into treatment and I had hopes of feeling better then I do. Doubt and fear want to creep in and I try to keep them at bay by reminding myself that my God is still in control, still has my back, and whether I "get better" or not it doesn't change that this life is His to do with as He sees fit for His purpose. I try not to focus on what science and research says should be going on or not going on, but take one day at a time focusing on God. I believe He has my back and is with me no matter what hurts or doesn't work. I have been apprehensive about starting school and the whole word "Fall" and have been trying to figure out why. Is it because of last Fall and aweful turn for the worse I took and how horribly challenging it was to keep house and school the girls and just function. If you don't know me well you would ask why I am home schooling again. But Chris and I prayed about it and oddly both felt at the same time the definite affirmation that we are to home school. So, I try to meet this apprehension with the reminder that if God wants us home school then He will give me what I need to do it.

I have experienced the frustration of trying to do things. I don't do well with a tight schedule (like Sunday mornings or having to get somewhere by a certain time). I do better with days that have no structure. This is so not like the true me. I am a type A personality that used to thrive off of routine and structure and schedules....at least I think I did. Last school year we had some pretty rough days with me being pretty frustrated with Becka. At the time we didn't know what it was or what was causing it. Now, we do but just knowing the cause doesn't make it go away.

So, there has to be a delicate balance. I have to ration my energy or I get frustrated. Like yesterday. I went to the grocery store for the first time by myself with just the girls. By the time I got home, I was fried for the day and down for the afternoon. When the energy is tapped out my fuse is short and I am grumpy and short with my family. Sunday mornings is another example. To get up and get the girls and I ready and to go to church and all that goes on at church, by the time I am home I am fried for the day. Too many days of that in a row appear to do me in like today where its not even noon and I am shot.

On the outside I look "great" and "healthy" (other people's comments) but I feel crummy. My smile is often misunderstood as feeling and doing well, when in reality I feel crummy but am at peace with it...most of the time.

I still find people's reactions to me interesting. When people ask "how are you doing" most don't really want the full story. I do not offer information without being prompted but am more than happy to share what I know about this disease and what is up with out treatment if asked. Its just that most don't really care enough to really want to know. If they have really cared enough to invest in us and cared enough to learn and get to know us then they still may not understand what is going on but they accept it. Its those that have not invested in getting to know us that have sat back in judgement and have criticized. It is interesting and frustrating all at once.

It doesn't help that we are in the phase of treatment where not much is happening (no IV's to cause "drama" I guess) but we are in the long haul of being on 3 antibiotics and waiting for numbers to be favorable. Our last visit with the doctor August 16th affirmed that we are supposed to be on 3 antibiotics (there was controversy with some on this...glad I listened to my intuition) and that, yes, the CD-57 number of "15" is pretty pathetic. But we also got some clarification on misunderstood information. On the Lyme test there are two sections and each section as "titres" or bands. Each band represents an antibody to a specific part of the bacteria. The top section is called "IGG" and the bottom section is called "IGM". The IGG shows past infections. The bottom section shows current infection. I think we started with one positive band at the top (IGG) and one positive band at the bottom (IGM). We were first under the impression that we were working towards two tests with no bands positive on the top or bottom. It was further clarified that the top band will always be positive, similar to a mono test. If you have ever had mono you will always show positive for mono (on the IGG part of the test). We currently do not have any positive bands on the bottom, which is a good thing. However, the CD-57 needs to be 180 with no positive bands on the bottom to be considered in remission and for treatment to stop. Till these results are reached, I will be on antibiotics. It is possible that if there aren't changes that the only thing that will change will be the antibiotics used. The only reason we are not still on the IV is because insurance will not approve it and we can't afford to pay for it out of pocket. We will have more labs done the week of Sept. 8th and we will see the doctor again two weeks after that (I think). This is the long haul of the treatment where things don't move very quickly or dramatically. However, based on what we have researched and what the doctor has said, the CD-57 will not creep up to 180 but should leap up. I think the doctor is hoping and expecting that our next test will show a major increase to at least the 70's or 80's.

There is a part of me that gets anxious for the nest set of labs but then I remember that my trust is not in the science of this disease and what research says it should do. My trust is in my Lord and knowing that it will be what it will be according to His purposes. Some days are easier then others in doing this. One of my biggest fears is that the test will indicate remission but all the symptoms will still be going full force. If I never regain "my life" back I have to accept that and be content with that. It would easier to accept if others accepted it but there I just reveal how concerned I am about what others think, thus taking my focus off of above. He has a reason and a purpose and a plan for everything, big or small. He will always be in control. I must rest in this each and every day. Nehemiah 8:10..."Do not be grieved, for the joy of the Lord is your strength".

A Good Day

noreply@blogger.com (Elizabeth Anne Saulnier) — Sun, 15 Aug 2010 02:51:00 +0000

After experiencing yesterday I am pretty convinced we had another herx. Like the first herx we experienced, there are days of yuckiness and then a day where you feel the herx was never around...literally the difference is like day and night. Yesterday, I am so happy to report, was one of my better days. I didn't wake up exhausted and I didn't hurt like I have this last week around the herx (which can be part of a herx). At 3:00 p.m. I began to yawn and show signs of exhaustion but I didn't start my day off already exhausted and thats how it has been particularly since the surgery. It was really nice. I looked at Chris and said, "you know, I'm having a pretty good day". We are always scared to say that, especially on a Friday because of the added antibiotic on the weekend but it really was a pretty good day. I also got laundry washed and put away by Wednesday night (I wash on Mondays) and that felt great especially since Monday was spent in bed as part of the herx.
Today hasn't been bad, I've just felt more tired and worn out than I did yesterday but friends of ours from Cypress came down and hung with us for several hours and that was great. It was so good to see them and talk with them and watch the kids play. Her kids have grown so much. We haven't seen them since Becka's baptism last November so it was really nice to just hang out with them today.
We have an appointment with the Lyme doc on Monday morning at 9:00. She may or may not run the labs again. Yesterday when I was having such a good day I thought several times, "I wonder if the CD-57 has gone up". Its scary to have thoughts like that because we know that track record is that those days are rare and you don't "expect" anything to continue...you just enjoy the good day and are thankful for that day.
Again, we are going into this appointment with some questions. One of our questions is my concern for my right arm, particularly the right shoulder. It is hurting pretty close to what it was before we saw the natural health doctor, which was pretty bad. Mobility is limited mostly due to it being "tied up" with the IV for almost 4 months but the joint pain goes back to over a year ago when the chiropractor took xrays and had MRI's done on both shoulders because they were bothering me so bad. At that time we were still chasing things and didn't know it was Lyme. One of the first indicators that what was going on was systemic and not just my hand was when the x-rays came back indicating bone on bone equally on each shoulder. Once we started seeing the natural health doctor a lot of the pain I was in (which was daily and pretty bad) the pain got under control. But since, we have had and IV in that arm and are not longer seeing the natural health doctor due to cost, time and energy. As I am experiencing the pain again I begin to wonder if the damage to the joints by the Lyme bacteria is permanent and if so does this mean future surgeries to "mend" the damage done by the bacteria. This is an overwhelming thought that leads to a "never ending" feeling but usually I stop the thought with, "nope, not going there because we are taking this day by day and no matter what happens my God is in control and is with me through it and will be what it will be". But it is one of our questions. I do worry that I won't get everything back that we have lost to this disease, including the ability to play piano again.
Something else I have noticed is spurts of change in the memory that I can't explain but am hoping its a sign things are changing for the good. For example, I've noticed that the last couple days (which I find interesting and note that it during a herx time) I am been scrambling for whatever I can to write on the things floating randomly through my brain in an effort to catch them before they flee away because I don't make a visual reminder that I had the thought I may never remember it again. I don't remember (that may be part of the problem...I say with some humor) doing that a week ago as badly....that I had gone a little while (how long, I can't say...again with some humor) without using my stickies in my purse or by my bed or in the kitchen to write down fleeting thoughts.
I am in the midst of trying to organize the girls curriculum. The curriculum we are using this year is different and more involved but I am so excited that we are doing it. I am a little apprehensive about it because it is more involved, thus it will require a little more effort on my part and I worry if I will have the strength and stamina. I felt like we spent so much of last year in survival mode after we finally figured out what was going on with me. It was a rough year with homeschooling due to the changes in me. With new curriculum this year I have been trying to get aquainted with it and trying to get a feel, especially for Becka (2nd grade) what each day will entail. It is taking more time, and stickies, to do this because I don't retain what I have looked at to piece together with the next thing I look at. So, what would probably take a normal person 1 hour to do, takes me at least 10 times that. So, in that regards we don't see improvement. I am still unable to focus on one thing, literally, at a time. Example, again, is listening to a DVD last night on Becka's new spelling component. It was running and I couldn't make out what was being said, mentally. After struggling for about 10 minutes, I stopped it, grabbed my ear phone and stuck both in the ears and started the darn thing over. With no other stimuli going in auditorally I was able to focus and grasp what was being said. It is very frustrating but I am getting better and better at recognizing what is going and therefore able to sometimes lower the frustration. Other times I'm not able to like when I am doing one girl's hair and the other is asking me questions, or even just standing next to me talking endlessly (see if you can figure out one that is...I say with humor) the frustration level rises quickly as I am easily over stimulated. To much demand on the system causes it to malfunction...thats the best way to put it. Fuses were blown oh so many times long before we had a diagnosis. I still can get frustrated but I am trying to help the girls understand how to help me. They don't get it and don't understand but we are all trying. I felt so bad Tuesday evening as I realized I had completely forgotten to take Maddie to dance that morning. The brain just doesn't register the day, and things that are regular routine, much less the things that aren't routine. I have since activated the calendar app on my phone to send me an alert the night before and 2 hours before Maddie's dance class. My mind and memory is one thing I have lost to Lyme that I hope I get back...said with no humor and all seriousness.
Praise God for the good days and pray heavily for grace and strength to get through the other days.
One thing we are looking forward to is having the youth over Sunday, August 22nd for WBS- Waffles, Bacon and swimming. Of course this is after their back-to-school bash that night at youth. It is things like this that Chris and I love and feel passionate about doing. These type of things at our house is our niche. I have recruited 3 other ladies, 4 waffle irons and 3 griddles to see the youth get fed that night and have one last night of hanging out before school starts the next day...for everyone, including my girls. It actually bummed me out today thinking about next week being our last week of the summer to be "lazy". This will be the earliest school has started at our house...at least that is when its planned to start...said with humor....as I think about most things I try to plan right now runs at least 3 weeks behind. God willing and the mind doesn't fail me it will start. I will be flat out exhausted after Sunday nights wet, sugary bacon event but it will definitely be worth it and I so look forward to it.
So, people have been asking, "are you getting better?", or "do you see a difference?" and that is a difficult question because some things are better and some are worse. Wait a month and it they switch. Things aren't staying the same, and thats supposed to be a good sign. It will be nice when there isn't anything left to get worse or better. Thats what I am shooting and longing for but I am waiting on the Lord for that day.