My Body's Secret

Jerry's Famous Deli - Oh and Neurology and Rheumetology

2012-04-19T23:22:00.001-07:00

So I have done the FUN update and I guess its time for the health update. I saw the neurologist and a rheumetologist on Monday down at Cedar Sinai. Forgive me if this is a bit blunt, I guess these updates seem to be getting quite mundane and old. I wonder if anyone really cares to read them.
Brett was amazing as usual I was in pain and struggling with nausea so early in the drive I climbed into the back seat, laid down and was out (thank God). I woke up somewhere near Hollywood Blvd. - just a couple blocks from the neurologists office. For the first time ever I think - we were early and the dr was running late. When we sat down I went through my normal journal that I keep. As of the visit I am averaging one seizure every three days. Not easy on the body and not so great on the brain. The discussion went back to EEGs being normal. The Dr suggested and seemed to strongly consider re-hospitalizing me and hooking me up to the standard EEG as well as putting electrodes or whatever they are up my nose and into my ears (allowing them to read electric activity deeper in my brain than the surface EEG allows. He mentioned we would have to simply wait for me to have an episode or two so it would be some time. ( NOTE they average 1 every 3 days they actually happen in clusters i.e. nothing for a week then 2 in 3 days.) I have gone 2 weeks within this average before having a cluster. So hospital time sounds just glorious oh and basically no matter the results they would basically try anti-epileptic medication in the end anyway. Sooo...Brett and he deduced that we should just try the meds. On Tuesday, I started 200 mg per day of Tegretol twice per day. Warned many times of the toxicity of anti-epileptics I wasn't really sure what to expect but....so far not terrible. Some slight nausea, dizziness, slurred speech, don't walk straight, but all of these I have sometimes anyway so who knows if its the meds? I should note I also doubled my klonopin 2 weeks ago and I am taking 750mg of Robaxin 2x a day (not just as needed)
I did have an odd experience Tuesday morning (before starting the new meds) I was up and getting myself together a bit when walking out of the bathroom and without warning, I seem to have blacked out, came to sitting on the floor in my bedroom phone still in hand, and a Payton (my boxer for those who don't know) on the majority of my lap. I cut my left outside knuckle somehow in the process and have a few new bruises on my legs but otherwise I am fine. I immediately got in touch with Brett who rushed home to watch me the rest of the day. My speech and gait were altered for a few hours after and my mood was quite irritable the remainder of the day. Otherwise, I seemed fine. All after symptoms are common for me both prior to and following seizure activity. I'm not sure what to think of the experience.
My other adventure Monday, besides eating at Jerry's Famous Deli for the first time. Just too bad they are right next door to the rheumetologist.....YUMMY is all I will say. We saw Dr. V and his PA Cori. Amazing people - just from the start. They were caring, interested and you could just see the wheels turning. They spent well over an hour collecting history, then was the exam and lab work. Dr. V was very honest - he doesn't see any outward obvious signs of an autoimmune disorder. He did all the blood work because there is reason to question. I will go back in for results in a couple of weeks.
At the same time I go down for results, we will meet with the neurologist again to follow-up on the new medication.
So, really aside from trying Jerry's Famous Deli - not a glamorous trip....nothing exciting to report. Today is day 7 without a seizure. I am hoping this trend continues. My body is just now starting to feel less pain and strain, although the fall added some. Praying this treatment works and I am back to me again soon.

Happy Anniversary lets Viva Las Vegas

2012-04-18T22:26:00.001-07:00

Oh I have been so neglectful of my blogging. It has been a mixture of good and bad. I had a wonderful "break" from everything for six days. April 3 my husband and I celebrated our 18th wedding anniversary. I thank God each day that we are together. He has been my everything throughout my illness and my life. How many people are lucky enough to meet their soul mate at 14! Its been an exciting road, lots of love and hard work.

With encouragement from my doctors I was able to make our yearly trek to Vegas for the Viva Las Vegas Rockabilly Weekend 15. For those not familiar it is a weekend of wonderfulness everything - cars, clothes, burlesque pinups, tiki pool parties, beautiful women, friendly people from all over the globe, shopping and did I mention amazing cars including showing ours at the famous car show.

I met some amazing women by chance during the event. Women dealing with terrible illness, pain, weight gain as a result of all of the above. They were women of all shapes, sizes, backgrounds. They were from the US, Canada, England and Australia. I felt absolutely invigorated to share our stories just by chance as we wandered through vendors. It quickly didn't matter that I was heavier than I prefer or that I was missing bands, events and other things. I revelled in the relationships. I find myself wishing we had exchanged contact information.

Of course I have lots of health updates but for today, I am going to leave it here. With joy and happiness that was Viva Las Vegas Rockabilly Weekender 15. We have been posting pictures for those interested on facebook at Slo Joe Photography - feel free to check it out!

Done being told....

2012-03-31T09:17:00.001-07:00

Well, its been quite the week. Monday I thought would provide answers that would bring us closer to a diagnosis. To me the diagnosis is imperative in order to move forward with my life. Do I continue trying to work, can I continue to work, what aspects of my life need to change and ultimately what symptoms can we treat to reduce my pain, discomfort, seizures, etc.

Monday, Tuesday came and went Wednesday the pain management specialist called and basically everything was inconclusive. Lupus doesn't look likely however some necessary tests were left out that would be necessary. I have an appointment to see a rhuemetologist in a couple weeks. They did show equivocal (not positive) presence of recent exposure to the fungus that is Valley Fever....also means pretty much nothing. I will follow up with an infectious disease specialist Monday just to get cleared or minor treatment if required.

I have had two awful seizures in the past four days. My body was just barely starting to feel functional and I was hit with another at 7:30 last night. Every muscle in my body is screaming despite norco and pain meds. My ankle feels like its sprained from the unnatural forced twisting. Days like this - the doctors don't understand my pain level. The medications just aren't enough.

I have been told all these ridiculous things about causes. I have put up with being pushed around. I have been told don't cry when your having one even if the pain is excruciating. I have gone along with all of it. Last night seizing alone, I realized I was going to fall off the bed. Before I could I somehow rolled myself onto the floor. My foot now was kicking the bed frame and I couldn't stop. I screamed for help, tried to text Brett (who was outside). Finally Sean came in and found me and got Brett. In all this I decided I am not "accepting that this is OK". I am not OK having the 2-3 times a week completely uncontrolled. I am not OK with my current pain level I am expected to "tolerate". The doctors have to do something. I need to get something more than this.

I don't know whats next but something needs to change and very soon.

Beat Up, Beat Down and Weakened

2012-03-21T16:21:00.002-07:00

I am feeling beat up, beat down and completely tortured. I had a seizure last night. As they go, it wasn't horrible. However, it somehow managed to twist my spine into a knot. My neck and upper spine and right hip took a beating. The event lasted roughly 40 minutes. Shot of Ativan stops things usually in 20 mins, this one 20 min was just the beginning of the slow reduction of movement. On a good note, i could breath the whole time and when I woke up this morning none of my limbs were facing the wrong direction - although I am pretty sure there are muscles in my neck that would greatly prefer my head to be facing my right shoulder vice forward.

I tried to get up about 11 am, ate a bit and went back to bed with my shaky, jerky, twitchy body. The good news is when you have been twitching for 12+ hours in an ativan induced sleep - your brain sees nothing wrong with going back to sleep while physically active.

Pain - is there a life without it? I saw the pain doctor. I explained that I can't get below a level 6 (when I am lucky). I average between a seven and eight level pain 24 hrs a day 7 days a week. I wonder if the pain meds are even worth taking. She gave me nothing, said lets wait for the test results. So here I am with pain meds that do so little. I remember the last time I took percocet, I swore I would never take it again. I hated the side effects. The fact that it deleted my memory of every event during the time I took it. Now I lay here and wonder which is worse? Being present and an active part of my life or not being in severe, tormenting pain? I am so angry that I am being faced with such a choice. What happened in my life that I am here in this nightmare?

I am so miserable physically and so drained I lay here praying I have lupus. Does anyone know how horrible that is? I have dear friends telling me "you don't want lupus". No, I don't want lupus I don't want to be sick. I didn't ask to have pain in every joint in my body. I didn't ask to have seizures
I just want someone, anyone to figure this out and do something to treat it. Help me somehow!

For God sakes as I lay here my left foot hurts so bad. I haven't been up more than 15 minutes today, if I put ANY pressure on it in the wrong spots it feels broken in every single little joint (yes I think I could count the tarsal joints blindly right now). The pain is up into my ankle.

In my head, I want to run. I want to run like I used to, feel all the tension melt, feel sweat pour down my face, legs, feel the wind dry it as fast as it forms, feel the burn in my lungs, quads, calves as I push myself past that invisible barrier. I want the satisfaction at the end of "I did it!" I kicked ass and my body hurts so good!

I have thrown caution to the wind a few times (not since things really fell apart in August) but if I was clear by the doctor's I would get on the treadmill to walk, the music thumping in the headphones and my body would just go I would jog just to feel that familiar cleansing pain. In the end it was never good but worth it at the time. I will never forget the first time, after released from my hysterectomy, tears rolled down my cheeks for a good mile. I was so happy to be running again. That was two years ago this month. I cried because it felt so good, but also because something inside me knew that wasn't going to happen for a while.

I miss ME. What happened to Sarah the independent, strong, confident woman. Sarah the wife - I am not an equal part of the team, I am a patient, requiring care (wonderfully done I will add), our sex life is nonexistent or as I say I am broken. Its hard to have much intimacy when the roles become caregiver/patient, when it hurts to hug or even hold hands. If those things hurt, I will spare details of how other more intimate parts of my body feel.

Sarah the mom - this is the most painful. None of us are ever perfect parents, its just not possible but mom in severe pain, repeated surgeries, pain meds, seizures - doesn't leave much left. In addition, they have less of their dad because while we should be caring for them as a couple, he is busy being a single parent and taking care of me, out of town dr appointments, lab work, acpuncture, therapy (so I can learn to cope with all of this), picking up meds, trying to get his hours in at work despite their needs, my needs, being up in the night with whatever my problem is, make ends meet with my reduced income. His list never ends. I don't know how he does it.

My role as a daughter, sister, granddaughter, friend - well I think that is wrapped up above. I try to be involved, be available, supportibe when they need me. The reality is I am just not capable. Where is my drive to succeed, my optimism, my style, my toughness, my career, my hobbies, my body.

I try to work from home - it isn't happening. I tried today, 10 minutes and back to bed. I have no leave, haven't in God knows how long. Days like today, the past week, the disease, the pain is winning. I can't do it. I lay here and wonder how long I put in sick leave. It is bad enough having no leave, no disability - what about the work I committed to complete? I have always been proud of my work ethic, my ability to always meet the deadline. I was synonymous with dependable. THAT word and my name have long since disconnected. Having Sarah do something means disappointment, missed deadlines, minimal quality performance. Everything I always was and always strove to be is GONE. I am THAT employee, that person that I wouldn't want to deal with. I don't want to give it up, I love everything about what I do. How and when will I know if my body can continue to support that dream?

Fun, Friends, Fatigue and Pain

2012-03-20T14:57:00.002-07:00

I can't tell you how many blogs I start and never finish or finish and never post. Something just is off in it. I re-read and I feel my words aren't really an accurate reflection of my emotions or experiences. I drift off topic, babble, or I just know that the point I am reaching for is somehow missing. This struggle is representative of my daily challenge - no matter how wonderful things are I am constantly reminded that my body is rebelling. The negativity of illness, pain, fatigue seem to constantly be fighting to overshadow the wonderful blessings life offers.

This weekend I have started two and they sit in the drafts folder. Each very different from the other. One is about the different types of friends in my life. The other, my screaming frustration in dealing with whatever this journey through pain is.

I was blessed to spend time with great friends both Friday and Saturday night. This week phone conversations and emails from friends have touched me and provided strength and reality. Somehow each experience was interrupted or changed by the fatigue and/or pain.

Friday night we got together with a friend from childhood, her husband, as well as some local friends to enjoy a favorite band. Saturday was a nice, long sushi dinner with wonderful people we don't see enough. Laughter and conversations were plenty.

I had a wonderful time, I am so lucky to have friendships that survived not just the nonsense of elementary, junior high and high school but careers, marriages, and thousands of miles. We get together and the conversation, the laughter is as if we still see each other every weekend. Add that the newer friends that have been through the last few years with us. I consider myself beyond blessed when I look at the friends God has blessed me with.

Friday, the band was awesome as usual, drinks were flowing - a true St. Patty's Day celebration! Getting ready to go out, I would always wear stillettos! Concert, club, bar - stillettos required wardrobe. I was just jerky enough that while considering my outfit, I realized not only did I not have the energy or pain tolerance to try a couple outfits - I also was jerky as hell and thus asking to fall if I wore my preferred heels. Jeans, t-shirt and chucks that's it! No rings fingers are swollen at joints. Dancing, not even an option, my balance is off for one, two my joints can't tolerate much movement at all. Drinking - very minimal with meds as well as my body just doesn't like it these days. I sat and every little bit walked around some. Two and a half hrs into the night, exhaustion, back and hip pain is a 6/7, by the time we said our goodbyes and got home my pain level was at 8. Fighting tears from the pain I took everything I could and waited. Two hrs later I finally got down to a 6. The pain stayed into the next day.

Saturday night quick throw together (Time up in front of the mirror = less fun with friends) - I am getting pretty creative with this. Dinner was wonderful. Two hrs from meds bam pain. Nothing more to take, 6/7 level pain. Not long after, my ears turned red, lips turned red, red splotches, upset stomach. We raced home, horrible end to perfect night. This doesn't begin to address the pain.

Sunday, slept late and thought I can do a little housework. Started a load of laundry, picked up the bedroom (5 mins max) and vacuummed. Yep pain and back in bed for about 4 hrs. Some chaos with the kids later on - I feel like I need my whole body massaged 24 hrs later. Chaos later in the day, getting dinner - welcome jerking. I slept about 2 hrs woke up because I got into yhe wrong position and OUCH. PLUS, the dreams were so non-stop and exhausting I felt almost better off awake.

I explain all of this out of frustration and to explain, document what is happening. I have people tell me I hurt because I am to still, if I would do more physical I may feel better. I have tried over and over and over. Arguably everyday I do something physical and everyday I suffer pain from it for days to follow. If I walk much of a distance I have the pleasure of my right leg turning inward and then only dragging behind as I walk. Yoga only do the most basic gentle stretches per the doctors, even these result in tremors and jerking often times. I keep doing, keep trying. I don't know how to explain the pain, the reality is it affects every aspect of me. I am so done hearing well what if you, well maybe if you just...I know its well meaning but after three years I am starting to feel like what I need is a diagnosis not - try to walk, sleep less, try stretching, why does it hurt, why can't you sleep....? Ahhhhh

PS: I wrote this mostly Sunday night but didn't get it posted. I saw my pain management doctor yesterday for the first time since August. She is echoing my strong feelings of a rheumatoid basis, lupus or RA and if that fails she is going back to movement disorders again. She pulled up test results during the appointment from my hospitalization in August. She pointed out that the lupus panel results were basically inconclusive based on the amount of steroids they had pumped into my back over the past week. Despite the steroids my ana levels were slightly elevated. I guess we shall see what the next week tells us.

Loneliness - The Naked Truth

2012-03-16T01:28:00.002-07:00

Loneliness. Everything about this whole situation is just that, lonely. I have all these wonderful people everywhere that I know love me. They all seem like reflections in a mirror. I hear the words of concern, I see the loving actions, i feel the loving hugs. Somehow its all there but it feels distant. It seems no matter what in the end I am alone.

No one else feels the pain, the frustration, fear. I am alone in bed lucky if I'm sleeping, coping with the pain while everyone else goes to work each morning. I remember days when I would drag myself out of bed tired from travel, work, overtime. Now I lay alone wondering if I will ever be able to feel that tiredness again. Feel the source of accomplishment of a project completed. Will I ever again feel the pride of being part of something so powerful that I know we are saving lives?

My kids ask for a ride somewhere, girls day, shooting with the guys, mobbing in the desert. I pass. Instead, they find substitutes and I lay alone. I feel the disappointment of precious memories missed, the frustration of yet again Mom can't be there. I lay alone as I missed my sons first wrestling matches of high school. Instead of seeing him accomplishing dreams or being there for his defeat, I am coping with pain, seizures whatever life has thrown at me. My children have had to learn to protects my disappointment and their's by "understanding", not wanting me there anyway. There is no understanding. Its nothing more than a word we are supposed to use to be positive. Support each other...

My husband no longer has a wife. I am some kind of dependant nightmare. I can't drive myself anywhere. I am emotional. I am on pain. Our time together is my illness, my pain. He is both parents, both incomes, my caregiver. While he should be at work, meetings, on travel he is chasing a rainbow of diagnosis with me. Looking for the leprechan at the bottom that just doesn't exist. I lay alone and watch the career he has worked so hard to build crumble.

I watch as friends bring me lunch, dinners, come to visit. I have a glorious time and shortly send them off to return to their lives and I return to pain, loneliness. I have no basis of normal conversation anymore. I bore myself just hearing me talk. How am I feeling? How did the test results come out? How is the pain? Do the doctors have any ideas? What's next? Are you able to work?

I feel like shit. Everything in my body basically hurts, I am so exhausted I could sleep 24 hrs a day. Instead I say something like OK, fine, good. I am embarrassed by pity and concern afyer so much time. I don't want to expand on what hurts, why do I think it hurts? What did I do that might have caused it? Have you tried...? I have no clue. Just ask the doctors, "I am stumped" "Its all in my head, "I need Dr House "(a fictional character that solves cases because he has a script)...

The tests, ya well they are "normal". The fucked up part - I am hoping and praying for bad test results! I WANT the phone call that says, I have bad news. At this point, if its "normal" I don't want to know. Normal has somehow become bad news!

What's next....well that would be another specialist, some new meds that make me somehow make me feel worse than I already do and they fix nothing In fact, if we're real lucky they will create a new symptom. Remember this step includes: renting cars because a Ford Expedition and $4.25+ a gallon for gas isn't affordable and adding a car payment right now makes even less sense. My husband misses a day or two a week of work driving me 145 miles each way to the specialist of the month, who will bless us with 10-15 mins of his or her time, order tests that have to be done near his office (on a different day). (Insert here - Being a relentless optimist I am sure this is it, we have found the answer, I emotionally embrace what's coming.) Oh, no fear the driving isn't over, I will go back again after the test results were normal for a follow up and "This is probably all psychological (because I'm the best dr in the world and if I can't figure it out then you are making it up) OR " Well, since the tests are all normal you should probably get xyz tested but that is done by next months specialist, I can give you a few referrals"...and yep you're right start process again.

Work, hahaha... I have the blessing of being able to work from home. How hard can it be to just put the laptop next to me in bed, on my lap on the recliner in my jammies at that? No effort, right? My body and brain disagree! My brain has dropped 40 IQ points, just mush. The pain, exhaustion/insomnia, meds all play against me. I turn the computer on and before its even loaded everything I am asleep again. I wake up if I start hurting, the phone rings or someone comes home. Caffeine should help this problem, "we all get tired during the day I have heard SO many times". Caffeine, yep wakes me up (maybe 20% of the time), or it gives me terrible stomach problems, if it works, I start typing, next thing I know my right arm is tremoring and my right hand resembles more of a claw than a hand...neither are very effective in typing or using a mouse of any sort. The tremor and caffeine stimulate the pain, now I am exhausted, have more pain and I can't be still so sleep is out of the question. Everyone has generosly donated thousands of hours of leave which ran out sometime ago. I accept taking leave without pay. I have learned to accept that deadlines that I would have never missed come and go - project incomplete. My only response - I am doing the best I can. All those years proving my 100% dependability, initiative, strong work ethic, intelligence, ability - thrown out with my extinct, dreams and goals. I've been told perhaps I should consider my options, quit working? I can't medically retire with no diagnosis! We can't keep paying for the mounting medical bills if there is no income because we are chasing answers. If I had a diagnosis perhaps I will know what I'm facing, get treatment instead of bandaids on the gushing wound and I would HAVE options.

At what point do I stop looking for answers? At what point does this process become futile? I am a fighter, I was a fighter. Am I fighting something that doesn't even exist? If I stop fighting do I accept that this will be my life forever? Me, watching everyone else live their lives, their dreams while I lay in pain and exhaustion for no reason? Giving up a career, retirement/disability I worked hard to have that security?

I have made a point to be positive this entire battle. I have been told that it will help heal me. Don't give the negativity power. This blog sounds negative. Its not meant as that. It's me putting words to my reality I am living everyday. I am taking off pretty dresses, the makep, the stilettoes. Here I am in my pjs, broken out skin and uncombed knotted, hair falling out, messy bun.

I am beyond thankful and blessed by so many amazing people. I remember it and feel it all the time. I have to be honest though. I don't share this for pity. I am tired of pity. I am tired of being a burden. I am tired of needing help and I am not asking for it. I am sharing my reality for someone out there that is going through their own struggles. You're not alone, I'm not alone, I feel alone but it is my fear, my pain, my anger talking. I don't know if answers will ever come. Today I had tons of blood taken. It took everything in me to get it done. My greatest fear is more normals. My optimism is gone. I dread getting results for all the opposite reasons. God, my family, my friends, my external strength will get me through this time, next time and always.

In Memory of Mike Hunsinger

2012-03-03T00:13:00.003-08:00

Note: I have been writing, rewriting and reworking this blog for over a week. Tonight I realize its time to share. I am still missing so many thoughts, feelings, words. Perhaps that will come later. For now.....
In Memory of Mike Hunsinger -
Life is an journey. As we pass through we meet all types of people. Its a true blessing when we are lucky enough to meet the kind of person that impacts our lives, challenges and even changes the way we think or feel. The impact may be made over years and years, other times a person's gift in our life is delivered much different.
On February 22, a son, husband, father, friend, hot-rodder and mentor took his life. I find myself void of words to express my feelings. My heart breaks for those that were blessed to call Mike family or friend. Their loss is not one that can be measured. He had so many amazing relationships that withstood the test of time. I can't begin to imagine the loss and emptiness they are experiencing.
We met Mike and Darlene through mutual friends that had been friends. We had met briefly numerous times over the years, parties, events, etc. My first real experience with Mike was one evening about two and a half years ago. Mike and Dennis came over to the house to drop off dinner. I was not doing so well physically or emotionally that night. Recent surgery, pain, fear, overwhelmed.... Things were taking their toll for the moment. Honestly, when I saw Dennis wasn't alone I thought "Really Dennis, not tonight I look as horrible as I feel. How uncomfortable a situation with someone I don't know well." My attitude was immediately shattered by the joy, compassion, strength and love that Dennis and Mike brought through the door. It was just what I needed. They instantly had me smiling, laughing, and feeling a strength I so badly needed.
From that day on, Mike became a quick friend. He was concerned about my health, concerned about how Brett was doing. He would make sure to check on us often, a quick visit with Brett around the office, a myriad of questions about my latest doctor's appointment.s and of course car talk. Always offering a hug, assistance and uplifting words. Brett came home just about weekly with a message "Mike says he is praying for you."
Mike and my Brett shared a love for classic cars. They became fast friends. Mike was a true old school hot rodder - eager to share everything he knew with the younger generation. His love and passion for the hobby was contagious. I admired the time he spent with his son, teaching him the art of building, showing, hot rodding. He did the same with club members, newbies in the hobby and everyone in between. Mike's love of cars was always evident. He used his passion to host and organize Toys for Tots drives every year as well as helping numerous other charities raise money. He was a man with a big heart.
The last time I saw Mike was just a few weeks ago, appropriately at a car show raising money for the Ridgecrest Regional Hospital Foundation. I was not feeling well and was very late arriving. It had been one frustrating morning. I enjoy dressing pinup for car shows. It's my part of the hobby. My tremor was fierce - I couldn't get my hair fixed - dropped the curling iron repeatedly and eyeliner, mascara, lipstick were out of the question. I couldn't even balance on heels for that matter! (For those that don't know me - heels are my staple! I always have crazy, high heels on. Its my thing) I felt defeated, not to mention terribly sore and uncomfortable from the constant muscle spasms. I was felt like I was quickly losing me.
Unbeknownst to me, Brett had shared my frustrations with Mike, and just moments after I got there I was getting that compassionate hug I had come to know along with words of concern and encouragement.
For some reason, I have spent days trying to recall his words only to realize the exact words aren't particularly important, it was more the meaning. In his hug and words, I realized that being there with friends was more important than all my superficial concerns about my hair, makeup, shoes. Time spent with those we care about is what matters. He changed my entire outlook instantly. Not only did he change the course of my day but my mindset when it comes to the challenges I face each day in this new life I am learning to live.
Tonight we attended the viewing. For me one step in saying good bye. Honestly, I hadn't realized how much seeing him one last time would mean to me. Before we got there I had mixed feelings about an open casket. Mike's soul was long gone, he is in a place of happiness and peace - pain free. Seeing him peaceful was healing. It gave me the chance to say thank you and good bye.
I will never know what Mike was experiencing or why he ended his life. I don't need to know. I do have moments where I wish I had known that he also was struggling, that he was hurting. I wish I had told him what an impact he had made in my life. I wish that just once I could have given him just a piece of what he gave to me.
In moving forward, I do know that the impact he made on my life was small compared to those that had the benefit of decades of friendship with him.
I pray that I can be the positive force in the lives of others that Mike was. I challenge myself to continue the love that Mike shared. Most importantly, remember everyone is struggling. Let those that impact my life know what they mean to me.
Mike - I thank the Lord that you came into my life even though it was only for a short time. I am still shocked at how hard this has hit me that you are gone. I do know that despite all the tears and pain, I wouldn't give back the opportunity to have you in our lives. I thank you for being what I needed. I thank you for helping me see what is truly important. I will never forget your friendship, compassion, empathy and strength. I am so sorry that you were in such despair. I only wish you could have known how much you were loved before you left us. God bless you.

Making Adjustments due to Chronic Illness

2012-02-21T00:19:00.002-08:00

One of the major things I am still working on is how do I address my physical challenges in my day to day life. My symptoms have varied over the course of the past few years and it seems as though just as I think I know what may work something changes.

Perhaps the most consistent challenge throughout has been learning that I simply can't plan things. My body is inconsistent and no matter how hard I try, I can't predict how I will feel day to day much less hour to hour. My physical condition limits basic functions like driving, making meals, basic cleaning up, even shaving my legs, fixing my hair or applying makeup. I am unable to make even short term social or work commitments more than with a tentative response.

I love cooking, vintage clothing, thrift shopping, pinup modeling, rockabilly events, swing dancing and running. The first thing I lost was running - when this began I was running 3-5 miles 5 days a week. Now just slowly walking for 10 minutes results in pain and exhaustion. My weight has sky rocketed, modeling is not an option at this time. The weight gain has also forced me to change how I dress for the time being.

Other things I have found much easier to work with. Cooking I depend on my crockpot, KitchenAide, a chopper, and cook when my tremors are calm and my energy is up. This way I enjoy the process of cooking still and dinner is usually ready early which relieves stress later if things get bad.

As far as going to events, parties, dinners, I am trying to learn that for now my body is in charge. Sometimes I am just not up to it. I think the hardest part of this is in the end when its a bad day - everyone either proceeds with plans and I am stuck bummed OR they cancel on my account. It seems like such a horrible situation regardless. Just no right answer. For me this is perhaps the biggest challenge. We do a lot of bbqs and casual dinners with friends at our house which is wonderful.

So today I pose a question to my readers. What adjustments have you had to make in order to cope with your chronic illness or perhaps a past illness our injury? What about adjustments to your hobbies and activities that you enjoy? Whats the hardest challenges?

Que Syrah Syrah

2012-02-19T23:12:00.001-08:00

During my illness my parents gave me a great sign "Que Syrah Syrah" - "what will be will be". A reminder that my constant worrying doesn't change a thing! Perhaps I need it tattooed on my arm.

On Thursday as we sat in the waiting room at the endocrinologists office, I found myself a bundle of nerves. I was terrified of the unknown. Isn't that always what we fear the most?

A man came in late thirties early forties. He sat down and immediately began telling us how over many years his health had deteriorated and just two weeks prior he had a heart transplant. As he shared his experiences my mind wandered very quickly away from my own issues. Initially, I was thankful for the distraction. As he continued to talk I realized that while my situation has seemed so scary - I haven't required an organ transplant. He later mentioned briefly the thought that someone else lost their life to give him life. I could hear a struggle. Why was he given life over someone else?

We all have our challenges. This strangers story was unique and emotional to him. I know so many friends that have experienced their own challenges. Some resulting in wonderful success in the end, some diagnosed with chronic illness and pain that has forever changed their day to day life, a few that despite fighting the unimaginable have died far to young.

Mom, Jeanie, Carrie, Michealle, Nance, Lenny, Zach your strength and courage are my inspiration. Miah, Tammy and Gina you fought courageous battles and were taken so early from this earth.

In the end for all of us, what will be will be. We fight, we do our best to be strong, to maintain our improve our health. Ultimately, no matter your spiritual beliefs worrying isn't going to change the end result. Arguably, it may even make it worse. So, no matter your individual challenge today or tomorrow - remember - Que Syrah Syrah ......

Spiritual Strength

2012-02-18T23:15:00.001-08:00

Through this struggle I have spent so much time in self reflection. Learning more about mindfulness (something I had NEVER even heard of before last August) and really trying to strengthen my personal spiritual beliefs and relationship. The mindfulness part I am still working on - don't asked me for a definition off the top of my head just yet.
I consider myself a Christian. I believe that Jesus died for our sins. At them same time perhaps I am unique, I believe we can learn a lot from other spiritual beliefs. More than I can count I have been touched and lead to prayer and deep thought by teachings from the Dahli Lama and Buddha just as examples. I am not party of a church. I have many personal reasons. Perhaps them easiest for me is that for me my spiritual journey and relationship with a higher power is mine. I choose to not feel required to follow a groups rules. That is a very personal decision for each individual.
God has provided me with support, strength, motivation, love and so much more from so many sources. It has been amazing. Coming out of the hospital in August he provided a doctor who I truly credit with my life. He is of the Sikh religion. He is peaceful, smart, compassionate, empathetic, strong in ways no other doctor and few people I have ever met. He cares about his patients as a whole person. He immediately not only was treating me with traditional Western medicine but also a variety of time tested Eastern techniques including private yoga sessions to address my health issues (not fitness as we usually associate). Special types of breathing, transfer of relaxation so many amazing spiritual healing connections. I don't know them words to explain this blessed experience.
Acupuncture has been a massive part of not only my weekly treatment but instrumental in my current diagnosis, pain relief, nausea treatment, headache treatment, seizure treatment, emotional balance - all limiting the number of medications I have had to take as well as allowing me to become more in touch with my body.
Through all of this I read a book by popular author Dr. Andrew Weill "Spontaneous Happiness". It did such an awesome job bringing so many of my personal experiences into words. He also has a book I learned about in the same book called "Spontaneous Healing". I am just starting to read this. I already can highly recommend both books. I'm not one for self help books and such, but given them challenges I have been facing I found his experiences and explanations inspiring and helpful in so many ways.
So how has this all affected me and my decisions, day to day living... one of my hardest struggles was how do I continue to work with all of these symptoms I am experiencing. The brain fog, slow cognitive function, tremors, severe fatigue, not to mention no longer being able to travel due to the seizures. The list felt never ending and overwhelming. I prayed for guidance read scripture, talked with my husband, family, friends, therapist. The guidance didn't touch my heart. I was really stressing. One evening as I was trying to relax and Brett was watching TV a wounded Marine came on, he said Sarah, you'll want to see this. I sat and watched a young Marine that had lost 3 of his four limbs. He proudly wore his uniform and was surrounded by his Marine brothers. As he spoke his pride and strength was undeniable. It wasn't a show for tv, he said he would go again knowing the end result. He had plans for life, he saw this not as the ends of his life but the beginning of a new adventure. In that moment my answer about work was crystal clear. He was my messenger. I will keep working. I will face my challenges head on. I will see this as a new adventure. My struggles are minimal compared to what he is facing AND he would do it again for our freedom, for the very life I am taking for granted.
I am working on remembering that precious lesson every moment of every day. Today I seemed to have lost sight of it. Tomorrow is another day. To all the wounded warriors that find the strength and motivation of the young man I saw that night - I know great things are coming your way. You are true heroes. And to that young man on TV that night - God Bless You!

One Step Forward, One Step Sideways

2012-02-18T00:06:00.001-08:00

To quote a friend - my doctors appointment was Good News. One step forward, and one step sideways. I think that is a very accurate account.

Now I am attempting to write this for the third time. Yesterday quite literally exhausted me. I fell asleep immediately when I got in bed last night and slept in. Started to write this afternoon and slept 4 hours. My body still feels so tired.

Tonight I am just miserable. I seem to be fighting a cold that my daughter brought home from work. I ended up suddenly feeling very odd (symptoms I have come to learn least occur without reason, its not the first time). Gastrointestinal unrest, irritable bladder, dry mouth, dry eyes, tension in shoulders followed by this tingling feeling in my arm or arms, chest pain, heart racing and then yes the jerking of limbs and a myoclonic episode, seizure, or whatever the fuck it is.... To be followed by ativan. And 20 to 30 minutes some symptoms subside...

Yes, all the doctors are aware of my symptoms along with enough to fill 3 more blogs. So, where are we - the endocrinologist was good. The adenoma (always benign) is 3 mm in size, or about 1/8 inch... Its not putting pressure on anything. He pointed out a number of concerns. He took a few good size vials of blood and Sunday to Monday I will be doing a 24 hour free cortisol urine test. We really won't know much until late next week as to what is going on. The side step - he doesn' t believe seizues are related :(

I was scheduled to see a movement specialist at another large university hospital today. I was so frustrated not knowing if I should go - lucky a short phone call with his staff, provided that he would need this endocrine information first. Problem solved -

I am falling asleep again. More tomorrow. Love to all

The Big Day

2012-02-16T10:53:00.001-08:00

Today is the big day. I see the endocrinologist and will begin to understand what having a pituitary adenoma truly means to me and the rest of my life. Yesterday, a friend and I met for lunch. Her mother, now 73 has lived with this condition for 30 years now. She shared many of her observations, her mothers experiences and challenges. In the end, her message was clearly that I will be fine. As with anything I have a lot to learn, my individual situation will likely be different in some minor ways, however over all, I will be able to live my life. What more can I ask for!

All that said, I honestly am terrified. I slept for about 90 minutes early, only to wake up about 10:30 pm wide awake, jerky, head, neck, back and pelvic pain as well as nausea - followed by a seizure at 1:45 am. The wind blowing loudly, the dogs snoring, Payton tried getting in the trash, even caught Cleedus trying to get to something (no food in sight) off the counter. I was 100% on edge. I finally found a comfortable position on the recliner with my favorite down comforter and my special Snuggie and slept for a couple hours. Fair to say I am totally stressed out.

Today feels life altering. What is this adenoma? Are we 100% sure that it is benign? How big is it? Does it require surgery? What are the risks of the surgery? Recovery? What about radiation? How do they determine what hormones are screwed up and how long until we can get things to start leveling out? What about seizures? Is this causing them for sure? If so, is it reversible? Is there any chance this has effected any organs i.e. heart, kidneys, liver, pancreas? I feel like I could write questions for hours. Not to mention I have a list of all my symptoms I have been compiling for 3 years now.

I have done deep breathing, I have prayed, I have gotten words of encouragement from loved ones and hugs from my daughter before I left town. I have snapped at my husbands good intentions for no reason. I have felt the sting of tears that aren't ready to fall. Now we spend a few hours in the car, head down to to the city (about 3 hours from home) to see the new specialist.

I will have a lot more answers tonight. Hopefully with the answers will become a level of peace. I will let you all know what I learn when I find the words.

Family and Friends

2012-02-16T02:01:00.000-08:00

Family and friends are so integral in our journey through life. I have been thinking on this blog for a few days. Reflecting on how my relationships have impacted my individual journey specifically the past 2 yrs and 7 months that have been so directly focused on illness, struggle, fear, pain, and challenges. Out of all of these things that many would say are negative came experiences that have changed who I am forever. It has changed how I view relationships. with not only my friends but also family. Its changed priorities in my life. Its strengthen my relationship with God. All lessons that focus around one thing, we aren't in this life alone for a reason. I consider myself incredibly blessed not only with family but with such a wonderful diverse group of incredibly supportive friends. Each one has served a unique role during this adventure. I have come to value in a way words will never describe - the role each of them has played in supporting not only me but my husband and my kids as well.

Knowing now what exactly is wrong with me and understanding the effects hormones play in our moods, behavior, personality and choices I find myself in a difficult place. All of these wonderful people in my life have stepped in the best way they knew how to provide the most support possible. Family took major sacrifices out of love and concern. While in my heart I was always grateful for everything, I never questioned intentions or the love they had for me - I was on a hormonal roller coaster from hell speed up at times by severe pain, pain medication, fear, loss of my own health and role in life. In return, those closest to me felt first hand the internal nightmare I was living. I have questioned relationships, tested unconditional love, screamed, yelled, locked myself up securely from emotion. In other words, I have been down right ugly. Please don't mistake this as "blaming" the adenoma and hormones. Quite the opposite, I am saying this because it is something I take full responsibility for. They were my words, my actions, my behavior. At the same time, its important for me to discuss the reality - the very ugly reality of how this has affected me. There has been a lot of damage done, but at the same time it has been an opportunity for self-reflection. Many, many thousands of hours have been spent re-learning myself, my interactions and working to understand and repair relationships.

My biggest difficulty in all of this has been the affect it has had on my kids. I have three wonderful children, they were 17, 15 and 12 when this began. My ability to be a parent through so much of this has been taken away. Severe pain, heavy narcotics, multiple surgeries, anti-seizure medications, not to mention seizures - and the emotional toll that ALL of that took on me as it continued with no resolution, just something new, new doctor, new possible diagnosis, the hormone instability, mood swings. I find myself so angry that this simple MRI wasn't done years ago for one major reason - my kids didn't deserve all this. I missed so much of their lives that I can't ever replace. At the same time, I have been blessed with sisters and friends that were right there ready to do whatever I couldn't. They have always been a strong presence in their lives and in a time like this, I realize how truly lucky we all are to have relationships like this. They have endured the test of time, the roller coaster of life and in the end there is nothing I can ever do to express my gratitude.

There are other friends that have kept my husband sane through all of this. They not only would show up with dinners for what seemed like months, but they drop by hang out. I honestly don't even know all they do - but the emotional support, checking in, stopping by, getting us out for dinner and laughter. They are invaluable. He has taken on so much stress through all of this, I can't even begin to imagine how I would cope if the tables were turned. He is a rock, his love for me shines through in everything. I couldn't be more blessed. I thank God for him and those that give him strength when I can't.

In addition to all of these amazing people, are the friends who know to show up with a drink, dessert, lunch, whatever just to talk. The friends that although far away physically are right here with me on the phone or chat getting me through a rough day. The friends at work that are compassionate and understanding. The friends that seem to know when to check on me at just the right time. Obviously so many people fall into many of these categories. I can't begin to imagine going through this experience without even one of them.

Early Morning Reflections

2012-02-13T07:20:00.001-08:00

Our Father who art in heaven, hallowed be thy name. Thy kingdom come, thy will be done on earth as it is in heaven. Give us this day our daily bread and forgive us our trespassers as we forgive those that have trespassed against us. Lead us not into temptation but deliver us from evil. For thine is the kingdom the power and the glory forever and ever Amen.
Since my phone call on Friday letting me know the reults of the MRI - I have been blessed by an outpouring of love and support that is nothing unusual from those close. Dinner, snacks, laughter, hugs, drinks, phone calls, offers to help all came pouring in. Although I have been facing debilitating health issues for 2.5 years - the response still surprises me. I immediately feel the warm blanket of love, true friendship, close family.
Friday I texted a very small group of people. Making a phone call and telling someone at that moment was impossible. I was in a little bit of shock looking back. As it was I didn't even get through my intended list- despite even two more days of the weekend. I have felt fear, anger, sadness, fear, frustration, tears, shock, happy for a diagnosis, thankful that its better than some possibilities we've discussed. Millions of questions anxious to understand and symptoms to improve.
I logically know its fairly common - UCLA says @ 1 in 1000 people live with this condition. Physically my symptoms have generally been worse the past couple weeks. Any stress whatsoever always increases them - finding out I have a tumor in my brain area no matter what - adds some stress, aggregates the symptoms, which in turn scares me, You see the cycle.
After finding out, I began slowly sending a few texts explaining the test results. My unitial thought just tell those that knew I was having the test and waiting. I didn't quite get through everyone. Just hearing it - I was exhausted. I did some relaxation followed by a 2 hour nap. NOTE: VERY important lesson I have learned through this, everything is easier after some sleep or even just relaxation. I can handle sleep often proceeded by deep relaxation breathing and repetition of The Lords Prayer in my mind. (your repitition or vizualization of peace must be your own).
I woke to a text from Renee that as we do and have done forever - she was bringing over appetizers, planned to try a new cocktail - a Gimlet and Happy Hour would commence shortly. She and Tia were soon followed by Joe, Tony and Correen. I set to work in the kitchen cooking - therapeutic and along the lines of the 1950s which we all enjoy. I made the dinner as planned for the evening. Salisbury Steak with mushroom gravy, mashed potatoes, peas and of course a Jello salad. Felt wonderful to feed everyone such a strong meal.
Saturday was quiet time with Brett a visit with my grandma that I am so blessed to have here still. My body needed rest. It seemed to be flipping out!

Sunday was comforting old Marilyn Monroe movies, Joe, Rod, Candice and Boo brought dinner and we enjoyed laughter and good times followed by the Grammy's.
I was able to have so many great discussions with loved ones despite how I was feeling - social media options provided just what I needed.
Last night was a rough night physically and emotionally. I went to bed determined to take Sean to school and head into work for a few hours. Unfortunately, my body had other ideas and the jerking started early. Dry mouth, something I haven't talked about much but it was quite annoying last night. Nothing seemed to help. Nausea, Hot and sweaty - obviously my own heat wave when everyone else is wrapped up in quilts.
It is now almost 7 am. I had ativan about 4 am, dozed off and on about an hour all night. I have recited the Lord's Prayer maybe 100s of times over the last night. It helps me refocus, relax, accept the changes of my day. God has truely blessed me! I am so thankful for his peace and direction as I move through this challenge. He has blessed me with a husband, kids, family and friends that couldn't be better. I'm learning that my expectations aren't important. I just need to be comfortable.
We shall see how this day will go. I give my expectations up and will relax.
Thank you all that have been so wonderful throughout this journey!

What have I experienced - Pituitary Adenoma

2012-02-12T15:29:00.000-08:00

I had a few folks ask for clarification yesterday after my blog. I have a confirmed pituitary adenoma. For now it is assumed this is the source of my health issues. I believe that this has been the source for quite sometime now. I can actually look back to health issues nearly 8 or 9 years ago and wonder if perhaps this goes back that far. I had a myriad of symptoms and the doctor was positive that I had an adrenal problem. The tests were negative, however, my pituitary was never checked.

I try to find a balance educating myself about a diagnosis online. I personally need to have information to feel at ease. The unknown totally freaks me out. I am cautious to look at sites such as Cedar Sinai (recommended by my physician), UCLA, John Hopkins. All provide some very good information on the condition and it's variety of concerns, effects, treatments, etc. It's helped me to understand why I have some of the symptoms I have experienced for SO LONG!!!

Just a basic "list" - diarrhea, nausea, racing heart rate (I've been told this was anxiety, but I didn't feel anxious just like my heart was beating out of my chest), mood swings, headaches, problems with my periods I don't even know how to detail - I ended up having a partial hysterectomy to "stop" part of those symptoms...myoclonic seizures, essential tremors, loss of balance, dropping things (same hand as tremor), unbearable joint pain, muscle weakness, bruising, hair loss (hand fulls), acne - quite odd in nature really, facial sinus pressure, insomnia, fatigue. Any attempt to exercise - I mean walking slowly for 10 minutes I would be so sore no amount of muscle relaxers, narcotics, anti-inflammatories would treat the pain for a couple of days. Pain so intense I can't sleep. Heat intolerance (sweat like crazy if it's the SLIGHTEST bit warm), cold intolerance...the past two days I have been melting. I prefer the cold intolerance. I can always seem to get warmer.

I'm not saying any of this to complain or for sympathy. I want to be clear on that. My whole purpose of this blog is to educate, help others dealing with the same thing really. I started this process and I looked and looked. Finding something, someone experiencing anything like I was - I never found it. It is so frustrating and so lonely to go through an illness - undiagnosed and without anyone that is or has experienced what you are going through.

I started today's blog - I was going to talk about dealing with the diagnosis. I am a bit focused on the physical symptoms right now. My symptoms the past week have been yuck. I feel rotten. As has gotten so common, it is affecting my ability to function even simple tasks - cleaning around the house, work, interactions with family and friends. The last few days the gastrointestinal symptoms have been awful. The headache and pressure strong, as well as the muscle and joint pain. Last night my heart rate was crazy and as usual lead to a myoclonic seizure and ativan injection.

My emotional reaction is all over the place. I guess in time I'll get better in touch with that and how I'm feeling. I'm not really sure how to put it all into words quite yet. I'll get there... Maybe next time? Till then, please feel free to ask questions or comment, what not. I'm open.

Back to Blogging

2012-02-11T15:04:00.000-08:00

I have been gone from blogging for far too long. I will go into some of my reasons and explain where I am now. I just logged into this, considering blogging again, not really sure if I was comfortable doing it again. I looked at my stats and realized I have had over 3,000 views on my page. That right there answers my question. There is an interest in what I've written, what I've had to say.

When I started this blog about myoclonus I didn't understand what I was going to face. In October I had gotten a glimpse of the ugly side of doctors. I had a couple months of the miserable physical symptoms associated with the disorder. The intensity of my situation the first months was massive. That definitely changed over time luckily. Also to be considered was the effects this had on me, my marriage, my immediate family, extended family, friendships and career.

Obviously, there isn't time today to go into all of that and I will try to spend more time on it as I can in upcoming blogs. First, I need to address why I stopped blogging. I think in one word I would say confusion. I was getting such mixed signals from doctors that I was confused at the cause, frustrated with everything I was experiencing. Some doctors said “we don’t know”. Other doctors told me it was the result of medications that I had been on. The last doctor I saw (when I stopped blogging), a "movement specialist" told me after a short visit that I had conversion disorder. His "logic" was that because I had a miscarriage at one point followed many years later by a fairly urgent hysterectomy at a young age that I hadn't properly dealt with these emotions and my body thus was converting them into physical symptoms. He diagnosed this by giving me a shot of B-12 vice the typical Ativan injection during a myoclonic episode. The episode passed and thus his diagnosis. The treatment - psycho-therapy.

Deep down I had a very difficult time with this diagnosis for so many reasons I can't even begin to list them all here. I already was seeing a therapist (just to try to learn to cope with everything I was experiencing). We delved into this theory. My therapist, neurologist, a psychologist, acupuncturist all felt this was ludicrous. There were too many physical symptoms. After the B-12 injection (I found out months later it was B-12 vs saline) and months on various medications I seemed to find a balance of sorts and was doing OK for a couple of months. I seemed to be improving. I was still struggling with some pain issues however the seizures had stopped, I was sleeping somewhat better, I was back to work for about six weeks.

The first week in December, I donated blood. Almost immediately I felt awful. It was the first time I had ever donated blood before. I figured this was fairly normal. Within 24 hours, I had my first myoclonic episode again. After this, I began struggling with tremors. The tremors were right side predominate and over time increased. The seizures became more frequent. Headaches, extreme fatigue, pain everywhere, insomnia, nausea, balance issues, right hand just dropping things and mood swings for sure. The lack of sleep, pain and tremors definitely lead to problems with depression. Its hard to stay upbeat despite all the efforts when you aren’t sleeping and everything hurts all the time – and NO ONE knows WHY….

Doing some research I found something online about B-12 helping to treat myoclonus. I was LIVID that I was given something known to treat myoclonus but told it was psychiatric. At this point, my husband and I made the connection of the previous injection. We attempted this treatment again. Some slight benefits but really very little. We also have tried klonopin for the tremors and sleep (which helps some), topamax (horrible side effects, only treated headaches), ibuprophen around the clock for pain, norco for pain, robaxin. Some short term help and that’s about it. There was discussion about endocrine system disorders, heavy metal poisoning – neurology seemed to be cut out of the picture.

This Thursday I had a series of MRI’s. My neurologist had dug through the mass of medical records and identified a number of tests that hadn’t been done during my hospitalization. I was referred to an endocrinologist. But in the meantime, the neurologist scheduled a follow-up EEG which came back normal, as well as MRI’s of my neck, brain and pituitary gland (the latter two with and without contrast). Friday about 11:30 a.m. the neurologist called to let me know that the MRI showed a pituitary adenoma. He had already consulted with an endocrinologist regarding my medical history and current test results. The endocrinologist’s office called during my conversation with the neurologist to schedule an appointment immediately.

Next Thursday, I will see the endocrinologist and learn more about this newest test result. I am dealing with a lot of emotions right now. Initially I am scared and angry! I know we specifically asked doctors about the pituitary gland at the beginning of this nightmare. We were told for some reason or another that wasn’t possible. I was under the belief that I had been tested for it. They may or may not have done a blood test of some kind. Now that I have had the right kind of MRI to test for it – I KNOW they never looked for it on an MRI before. How dare they do this? I don’t understand how the HELL I spent an entire month in the hospital and NO ONE ever found this? If I had seizure activity – endocrine disorders are a major cause. WHY did they spend a ridiculous amount of time doing psychiatric exams – which I PASSED, every neurological test, along with a million other things – but they NEVER called in an endocrinologist? Seriously? How does this happen? I can think back to almost 7 years ago when I began having symptoms that lean toward endocrine disorders. Every time a different doctor told me it was nothing or it was psychological – I needed a hysterectomy…the list is never ending.

I am scared. I have a “tumor” in my brain area. Yes it is almost ALWAYS benign. There is a chance of surgery to remove it. There is hormone therapy. There is a chance of radiation therapy. I didn’t ask how big the adenoma is… There are a lot of questions, more than I can verbalize yet. In time those questions will come.

Phantom of the Opera

2011-10-05T21:30:00.001-07:00

Phantom of the Opera this music has felt as if it is speaking to me lately. The struggle - at times like yesterday I feel like Phantom. Someone that has been created not by personal choice is now nothing more than terrifying, has great talent and love however will never be able to let the world see those.
Today I feel vulnerable - Christina - beautiful, tragic, vulnerable and fearful my talents will be lost in the night. Desperate for someone to need me and be honest with me. Just like her I want freedom from this - time to enjoy my life. I have the love of a lifetime - it is metaphorical for different aspects of my life. Any where I WANT to go I want to feel free to go. I feel as if the seizures and health are the phantom holding me in some dark chamber. Keeping my light from shining. I have gained 25+ lbs since I walked in the hospital Aug 5. For the first time in my life I feel FAT. Even harder - I have a publisher interested in including me in more books, maybe even submit to higher distribution publications.
I learned today in psychotherapy - only way I'm going to get through this challenge. If you are dealing with chronic pain, devastating illness - get help! I was resistant. I am stubborn. If I didn't have this outlet, I couldn't sort out the torture, grief, fear and so much more that my brain, heart and soul struggle with each day. Today I learned why despite being surrounded by amazing supportive people I feel alone. I was able to verbalize it, have someone understand and show me that I just need a REAL hug and I must fall into the embrace and accept it. What a feeling! It was there all along, I didn't know how!
Well, time to wrap this up. I need to sleep. Please pray for me tomorrow. I am seeing Dr. Jerome Lint, a movement specialist that responded to my desperate email and got me in immediately. HE is eager to see me. I pray this means something positive, at least a diagnosis.

Hugs to all of my readers. My stats the other day were unreal! I'm not sure if it will continue or if it was right? I hope someone is listening and maybe this is making their struggle a bit easier.

EMOTIONAL AND STRESSFUL

2011-10-05T08:00:00.001-07:00

AHHHHHH Ok I feel like I could do that 30 more times today and not even break the surface. The only thing I have ever found that dents this feeling - really - is running. How good a run - maybe five miles or so. Instead my feet and ankles while some better because I was in bed 85% of the day balked strongly at just the thought of taking pictures of items for the Etsy store.
I look at myself in the mirror - just over a month ago I was 30 lbs lighter, I was photographed and published and on my way to my to becoming a pinup model. The same publisher is very interested in me again - ya wow! Its all I can do to drop meds and get used to the new ones. Dieting at 1000 calories a day again sounds well impossible no matter how bad I want it. I know it isn't a priority, I know it really shouldn't matter but it hurts regardless.
I'm promising to be honest here. Wow. It seems easy sometimes - others not so much.
Today we listed our motor home for sale. We talked about it so much and I know it has to be done. The payment, gas, insurance, upkeep, registration. Not exactly realistic in our situation anymore. This is a loss of something physical I feel we worked hard for. Harder part when push comes to shove, is we have had some amazing times as a family in that motor home. I guess I figured we would always have it. Its crazy enough that my "babies" are 18. 17 (in college) and 14 (high school). That always seemed to bring us together no matter what was going on. It is just another symbol of the end.
Oh, and while being honest what about the medical bill collectors. They call, send mail. Bills from doctors, tests, labs, people places I seemingly know nothing about. Somehow we owe them $200 here, $11, the variety equaling thousands and thousands of dollars. Everytime I see one I think - all this $$ (nevermind what insurance has paid) and we have NO clue what's going on. I'm still a medical mystery.
My entire brain (until tremors or a seizure start) tell me just to go back to work, do whatever they have for me. If the pain is bad suck it up. I can handle anything. My husband has been working from home or on sick leave the better part of 2 months. Back to that I require a babysitter 24/7.

The tension in my house I HATE. I always feel if I was just "normal". The first reality - my way like MANY of you. out there - deal with this tension by running away to work, travel. I was mastering that technique. Now if I could just think harder, control more it would all be OK - I could go back to what's easy, what's "normal" for me. The reality is it isn't. I'm not in control. God is proving he is in control this time around. I have some amazing friends and family that so gently remind of this. I am trying so hard - all of you. You are also the ones that know this is perhaps my biggest weakness.
You know how you cherish those days when you can wear NOTHING but pajamas or sweats and just watch movies/football? I know I used too. Today was the first really fall day here. Tonight as I laid in a tub of warm water and epsom salts (yes for my aching feet) I realized that when I was able to work, I would have been so excited to wear that new fall dress and shoes this morning. Instead like many days - I never got out of my pj's at all. Now I dream of the opposite. Am I ever happy?

Wonderful Day

2011-10-04T00:28:00.000-07:00

As so many of you are aware, I am aware of vintage clothing, music and much more. Through out this experience I have had had so many wonderful people that mean the world to me - encouraging me to do something with my love for pinup, vintage, thrift shopping, garage selling all of it.

I have successfully set up my etsy account. My new online store via etsy is called Stormy Vintage - of course a play on my pinup name. I am hoping that tomorrow I will be able to begin putting pictures in tomorrow and some items can begin selling. I was blessed enough to feel up to a few garage sales on Friday morning with Brett. I found some amazing vintage patterns, some very vintage style fabric, a handbag and some adorable belts.

Today Correen and I got some time in at a local thrift store. I found some wonderful items. My favorite a late 50's/early 60's shift dress with matching neck scarf. Just adorable. Thanks to both mine and my husbands wonderful parents I was able to gather the inventory that I have collected for the past few years. In addition, I was contacted by a previous publisher with interest of me doing more pinup modeling. Don't forget to check out Pinups and Hot Rods Vol. 1. Perhaps I will participate in future publications. I would love too.

I have also added a widget to my blog - It includes links to anything that I refer to on Amazon. If you use this link I get the opportunity to earn a very little kick back for the reference. Being that I'm not working this could really come in handy. In addition, I spend so much time reading and listening to music - I simply decided I would love to share some of what I am learning with you.

Now the health part of my day. The best news since this nightmare began. I'm not sure if I mentioned it a few weeks ago or not. I decided I would be proactive. After hours of internet research I sent emails to every movement specialist I could find with an email address listed. As you can imagine most of them were return to sender as they were no longer any good. I got a few "I'm not taking new patients". This morning I received a phone call from a Dr. Jerome Lint's office. His staff member told me he is VERY interested in the email I sent (included video's of seizures). He wants to see me immediately. I will see him first thing Thursday!!! No we can see you in 3 weeks. I want to thank God and thank ALL of you that have been praying so much. Please pray that it will go as wonderful.

I luckily still have an appointment October 12 with Dr. Mark Lew at USC. He has an amazing reputation. I am starting to feel hopeful that a diagnosis and perhaps some level of understanding will surface soon. I did go 72 hours without a seizure. Unfortunately last night about midnight I woke up to terrible back pain and within minutes I was seizing. I lasted aout the normal 30 minutes. My back has been terribly sore all day. The other odd symptom I am struggling with the past few days - some edema fairly mild, however extremely painful in my feet and ankles. It doesn't seem to improve much when I stay off my feet - painwise. I have found an amazing product that does help Traumeel. I was introduced to it during my 22 days in the hospital. I can't believe how much it helps. I accidently let myself run out. I miss it so much. Really - anyone with pain even just from a workout. This is it! AND it doesn't smell, and it's not a nasty narcotic/opiate with a ton of terrible side effects.

One thing I did notice today that was rough - the old days not only could I drive myself around to the various thrift stores, I could hit all of them. Today I honestly barely made it through one store. I was exhausted, sore and unable to even enjoy my purchases the end of the day. I ended up sleeping for yours afterwards, taking a very LONG bubble bath with Village Naturals Aches and Pains. listening to my favorite music.

Wonderful reset to say the least - gave me the ability get in set up the Etsy Store. Really got my head in place. Its been quite a scattered day, and my post a bit scattered as well. The best part I feel good today emotionally. The pain is there and difficult, I'm shaking awful becasue I chose to use the laptop, but I got to thrift shop, set up my online store (step one) AND I'm blogging.

I hope you don't mind the Amazon widget. I want to share these wonderful things I have found. I have NO money coming in. Maybe it will work. Please let me know. I don't want to be a sell out. One last thing that is just awesome is a book that reflects some of the things the neurologist staff has been working on with me. Alternative methods of healing. I am loving to drink a chunk of ginger in hot water with a bit of honey. My new morning drink that I am really trying to switch to from coffee - just HOT water and lemon. I feel sooo GOOOD when I do this. Its such minor changes folks. You won't believe it. I just love so far how this book talks about it, just the basics in idiot terms :)

OK my LOVES I must try to go to sleep. Please feedback. Hopefully tomorrow will be as wonderful as today. Hugs to you all that keep me, my family going. Today and my joy would and could not have happened without all of you. We are so blessed.

MEDICAL UPDATE 2 0ctober 2011

2011-10-02T04:49:00.001-07:00

I have been just awful about blogging. I found myself realizing yesterday that I miss it terribly. I in turn had some real honest thinking to do. If this is something I enjoy so much why have I allowed it to be neglected? I have indeed had a few technical/physical issues. My phone (a DROID2 has been acting up). The slide out qwerty keyboard decided to stop lighting up. I am most comfortable using that method and it is gone. Secondly as I mentioned the tremors - just trying to check my work email with the touch pad mouse - I had lost all patience with the situation. Tonight I'm doing my best to type on the touch screen qwerty. Its much slower for me so far because it isn't my comfort zone yet. I'm hoping it goes well because I have a lot I would really like to share. Get you caught up with me so that I can get back to daily entries. My reason - its amazingly therapeutic for me.

I am going to start on that topic. Therapeutic blogging ...really how can I find sharing my honest most intimate feelings with the world - more challenging and scarier sharing with those close to me. Strangers have no preconceived ideas of who or what I am. I don't have any real emotional connection IF I happened to get feedback. Family, friends, coworkers, all see me and everything I'm experiencing. Some days as you have seen that isn't so pretty, nice, kind, or careful. I guess in the end I figure if you don't want to see/hear it - you don't waste your time.

On the medical side of things - few changes. Most important and exciting I am finally off Zoloft (sertaline) after almost 10 years. Couple things before I go into "getting off". I wasn't proud that I took an antidepressant. I don't think anyone is. The past few years I had come to the conclusion based on various physicians (not psychiatric) that I truly struggled with anxiety and some depression. Back when I was prescribed I even remember thinking (as the internist prescribed it) during a hospitalization for a severe kidney infection. Looking back and knowing what I know now, I was in terrible pain and was given no pain meds because "my kidneys couldn't filter them", sounds like a reason to cry a bit seem a bit anxious... I recall going to see a psychologist for some time after and being told I was fine just recovering from a terrible illness.

Since then I have attempted to stop it with the assistance of various physicians. Every time I got to 50 mg. I would feel awful. EVERY TIME I was told I didn't feel good because I was having anxiety. One positive aspect to the idiot neurologist who tried to diagnose everything psychogenic - I know without a shadow of a doubt I have nothing psychological (I know! LOL)

Now facing life altering medical issues - undiagnosed myoclonus, tardive, tremors - all side effects of the medication I have been taking forever poisoning my body for conditions I don't have - conditions that were because of doctors simply didn't want to say I don't know.

I have been out of the hospital just over 4 weeks. I have weaned off straight OxyContin, 40mg a day (to treat pain of the seizures). Ativan 1 mg 4x per day (plus daily 1-3 2 mg IV or IM injections to stop the seizures. I also left taking 50 mg Zoloft (down from 150mg). It took a couple weeks to get ofc the controlled substances. Didn't even finish scripts. I have gotten off narcotics many times the past 2 yrs. Its physical effects can be ugh......but wean and your good.

I am saying all this because the Zoloft is a nightmare. I am dizzy, bring zaps (yes feels constantly like a lightening strikes) I havent had 12.5 mg since last Friday. The diarrhea, nausea, joint pain. All hasn't eased even slightly. I start researching and it isn't uncommon to last a month plus! The more I experience this, the more I believe these medications aren't monitored properly. Yes they serve an amazing purpose when needed. There needs to be more awareness of their dangers but they also need to mo irises my mental health physicians for proper use. For many people around the world they have proven az dangerous as narcotics.

PLEASE be cautious. If you have questions about my experience please free to ask me, more importantly your doctor.

My best news is Dr. Mark Lew, a movement disorder specialist agreed to see me 12 Oct. Much better than December! News hopefully on the horizon.

I must end this and sleep! But I must say that I have been so reminded how blessed we are with the most amazing family and TRUE friends. Wednesday was in terribly hard day. The scariest being unable to speak during a seizure and for 2 hours after. I was close to loosing faith, and God has reminded me 100 fold how blessed I am. Tomorrow I hope to explain.

Need to Edit Blog

2011-10-02T02:35:00.001-07:00

I am have been remiss in editing this and I apologize. I often submit via an email written on my phone. I have difficulty often with Parkinson type tremors in my hands the past maybe 2 weeks. This leaves typing on the computer quite frustrating for me. I know things are in terribly disturbing disarray. I am learning the patterns of the tremors. I am also realizing it seems to becoming less and less. Please bear with my chaos a bit longer.

Pause in Clogging - Bit od

2011-09-21T02:23:00.001-07:00

Haven't blogged in far too long. I'm sorry to those that truly are interested and are concerned about me. I had some feedback that quite honestly left me questioning if I wanted to be sharing such personal and emotional information with the world. Of course I considered this at length prior to doing it, but re-evaluation was important. Decision, this is more therapeutic and enjoyable for me than I willing to give up.

Most of my blogs are far from amazing writing. I often times will just write what is on my mind - blindly share what I am experiencing. At times this ends in less than stellar, smooth easy to understand reading. I have always tried to go back and edit them for spelling/grammar/clarity as I feel up to it. For the same reasons I'm not working, doing that it's easier said than done. Dr appts (rarely less than 3 hour drive) constantly changing hard core meds that I'm on - I'm sorry folks its part of my reality right now.

I had many compliments about what I wrote in honor of my mom on her birthday. First of all thank you, it meant a LOT and was very emotional for me to not just write but share with her AND the world. I don't consider it "just a blog" I spent a lot of time, many days, hours working on it. How the words flowed, exactly what I said and how I said it were carefully choreographed. I had a lot that needed to be said for myself. However, if you want to see me, my experiences as they happen good, bad and ugly (my purpose of blogging). Some times I haven't slept for 24 hrs, other times I can barely keep my eyes open despite the 20 hrs of sleep I've had. Again not to mention what medications I'm on.

Another point I want to talk about that has been a major topic of emotional change, personal investigation. My drive for "success" has been a topic of discussion more than once. Someone even stated that basically you don't strive for success - that is something that will be determined by others ultimately in your obituary. Having written obituaries for a few years in my early 20s at the local newspaper I couldn't agree more with this statement. I also recognize that success is measured by each of us VERY differently. The areas of success are equally diverse. Would a different word have been better suited? Possibly....but for now I hope my readers understood my meaning.

Now I question with all of this. Should I have go back and edit all of this, attempt to improve my quality from here out? My first rule for ME is this is my experience, my blog, my personal emotions. None of its changing for someone else this time. That would make no sense now would it? I go back and re-read past postings. If I choose I clean it up. One of the very harsh realities for me and you if your watching, my writing demonstrates for me (as clearly as a video recording) my bad days whether its pain, too many mess in me, or just plain emotional. Some blobs just drop off and end....I started having an episode, or the meds were just strong and I fell as

This experience isn't cotton candy.....mmmm THAT sounds good LOL. Its arguably the most challenging, life altering, emotional ---- I have ever experienced. There are pretty days, basic days and downright ugly.

So, please keep the comments coming. Some have been intellectually and philosophically challenging for me. I'm not ignoring them. I feel blessed just by the thought that was put into the messages. Please understand they deserve equal response which right now I simply can't provide an answer I'm happy with.

Visitors - My house is open! I'm missing everyone terrible. Please come by! Usually I am home. Even emails. I love it ALL!!

Time to Stop Screaming!

2011-09-14T01:29:00.001-07:00

My mom celebrated her birthday today. She started my day responding to my Happy Birthday wishes with the comment "I'm just happy to be alive". I couldn't agree more! I can't begin to imagine my life without her.

Being her birthday I spent time thinking about my maternal grandmothers comment Saturday - you must stop fighting with your mother. I know why I couldn't just "stop", I never "started". I am very close to my parents. I think the world of my Mom.

My mom sacrificed the first 10+ years of my life being a stay at home mom. She even home-schooled me for a year, my sisters longer. She worked very hard to feed us extremely healthy food, do rotation diets for my food allergies. She did it not only for myself and my sisters but also opened our home as a day care provider. All while going to school herself to get her degree. So many things I can't even begin to imagine how she had the time, strength or power.

I was never an easy child. Arguably, I have fought with her since birth. I was THAT baby. I screamed non-stop at least my first year and about half the time until I was, oh say 10 and maybe 1/3 of the time until I moved out. God bless her. Now that I've raised two daughters, she had her work cut out for her when it came to me. She put me in anger management, she tried to teach me how to be calmer about life, relax, not be so stubborn in everyway she could.

As I've mentioned before I wanted to be the BEST as far back as I can remember. I also loved pleasing my parents. Looking at it now, I was quite the paradox, in one hand I made their life a living hell with my attitude and on the other I wanted to be perfect in school, activities, etc. When she was proud - it just further confirmed in my mind that I was succeeding!

I planned for success early- I would graduate (a year early) with stellar grades, move on and be accepted to a prestigious university. Instead one morning in April 1993, just 6 or 7 weeks before graduation I told her that I was pregnant. I broke her heart. Now as a parent I know she was scared for me. My response - be the BEST - take control of what I did and prove to myself, my mom (and everyone) I could do it, I would do it. I would succeed at this!

In doing so I now see I compounded the pain, her loss, her fears, I thought I was helping her - she didn't need to raise our baby, we did. This time was so difficult for our relationship, but being 16/17 I failed to see all my options. I wasn't fighting with her - I'm sure it looked that way now - I was simply determined to succeed the best way I knew how for me, my new family.

For years, I consciously was showing her I was a success despite being a teen mom. I worked hard to be the best mom (accepting I could never be a mom like she had been). I unconsiously worked jobs that would add to it, make her proud. Usually, jobs that I enjoyed somewhat, or enjoyed portions of but usually I found difficult. Sometimes it was easy because I was promoting something that I truly believed in, but in the end it ate me alive. Social work, patient care, I don't have the strength she has in those areas.

Have I stopped yelling and screaming yet? Physically maybe (my kids may disagree at times) but I guess I haven't. I have been silently screaming saying here I am, I'm successful, I'm doing great. Unfortunately, being my worst critic. I created this picture of who and what I will be and exactly how I will do it. I've foolishly thought that meant she should just LOVE everything I LOVE and envisioned as if it mattered.

She and I are different in more ways than I can list. She is a Virgo, I'm a Gemini... We also are very much the same. Differences are what make us all so wonderful. They also are what makes it so difficult for us to understand each other. She may not love the fact that I keep tattooing my body, my dream is to be a pin-up girl, or maybe even why I was so passionate about my last position at work. I haven't been fighting with my Mom this whole time, I've just been yelling I'm successful, I did it, I'm a good mom, daughter - forgetting she doesn't have to share my passions and desires to love me and be proud of my success. Foolishly, in my becoming comfortable with me, I left this piece out.

In the end, I'm proud of my Mom and the success she has had. I personally think in her career she is hands down the best! If I find just a fraction of the success she has as a wife, mother and in her career - my life will be complete.

One trait we share is neither of us is very good at stopping and resting when we should. Its gotten both of us into situations where God has to smack us upside the head.

Mom, Nana - I am working on this and hear God's message loud and clear. I'm not fighting - I guess I was just screaming still. Its time for silence (real silence). I love you both.

"Dream" Job - Chance of a Lifetime or Proving Ground

2011-09-13T01:39:00.001-07:00

Going back I have worked very hard to do whatever job was placed in front of me. I have always done everything I could to be the BEST. I always had something to prove. I honestly can't even begin to guess when this started or why. I remember vaguely a third grade teacher - I had her for 6 months (maybe) and in the middle of that I was out probably 6 weeks+ due to appendicitis and complications from it. I started mid-year from another school and I was behind (in my mind). They were far into cursive writing - it may have even been required and my last school we had barely begun learning. It was instant failure in my mind. Obviously, still remember it to this day.
The older I got - I realized quickly that being ahead of the curve not behind it was my choice. In school I remember almost as a rule doing homework as soon as it was assigned - preferably in class that same day. I hated even the feeling of it being there later, yet on occasion I would get overwhelmed by something and procrastinate - which devastated me. Ever since I began working it was SUCCEED - having been a teen mom I found it impossible to give 100% to my new family, 100% to school and 100% to work. I cut out school, I could put an extra 25% into work and move up pretty damn well. I was happy with it, we were able to pay our own bills (sign in my book of success), and the recognition I often received wasn't bad either.
When my last position became a reality it was the ultimate challenge for me. I had been an office manager (polite term for secretary based on my duties) for a few years now. I liked the job okay but it wasn't something I saw myself doing ever much less a few years. I felt like dress the part, smile, be happy all the time, and do the tasks means everyone is happy. Even this job I worked when the bosses worked, brought coffee, goodies took the extra steps to be the BEST.
The position I was accepted for and worked for the past almost five years - was so much more. I was challenged beyond belief. Even more I had a LOT of people that couldn't believe that someone (ME) could go from being a secretary to doing technical work - especially without a degree! What better situation for me - not only was I extremely passionate about what I would be doing, I had to prove to everyone that not only could I do the job - I would be amazing. I should note here that I faced disgusting, unacceptable behavior from an unreal number of "professionals" trying to embarrass, scare, or maybe just make life very uncomfortable so I would give up, walk away. They didn't realize I am way to stubborn for that (and I guess I didn't realize a persons body can only do, take and succeed to a certain breaking point)
I literally put everything I had into it. I travelled non-stop, I worked at work, I brought work home at night, weekends. I loved what I was doing because of what it was. I was lost in an amazing job that first and foremost I loved. Next the hard work started paying off and I began to be noticed. Compliments, awards just feeding into me once again being the BEST. Let's make a point though that the more I succeeded the more it seemed those same people who wished me to fail in the beginning were waiting in the wings. I pushed harder and harder - intent on a glorious review and goals of advancement. As I did it I was succeeding, I was the BEST....at work. I was married to work, and projects somehow became babies to coddle.
The same day that performance cycle ended - my body crashed. That was September 30, 2009. Since then work has been something I crave and despise. The passion for the work has never changed, I want so bad to return to what I enjoyed so much. At the same time I despise the hatred and judgement that lurked behind every corner. People that often times had no clue what my job title or job description were yet hated to see me succeed.
I haven't been able to work much since September '09. I worked from home as much as my worsening/changing medical condition allowed, and I got a couple weeks in the office here and there. I found out Friday that effective two years from that date in 2009, my "dream career" is no longer. I still have a job, if and when I am able to return I will find a new position. Given today's economy, I am nothing but thankful.
Listening to my sister, my husband, friends - everyone has said it is God taking care of me in a very difficult situation. I've had to grieve - I've cried a lot. I was literally heart broken that it was gone.
Writing this I am heart broken but for a different reason than when I started. I got so caught up in the passion, the goals, the challenge, and being the "BEST" that I allowed myself to represent my "WORST" qualities. For one I allowed people that mean NOTHING to me, that only wanted to see me fail determine my course of action. I nearly lost not only myself but the most amazing husband - who despite me held on even when I thought otherwise. In doing so I forgot who I was and who is truly important in my life - ME, my husband, my kids, my family, friends and my country. That's who I succeed for....that's who deserves my BEST and never again can I sacrifice ME to accomplish that....
....a lesson that I hear loud and clear but I'm not yet sure how to do it. Time, prayer, family, friends I'm sure will get me there as they have gotten me to here.

Acceptance and LAUGHTER

2011-09-12T23:40:00.001-07:00

In retrospect last night I realized that a big part of my challenge the past few days has been withdrawals. I saw my neurologist on Friday and he made some very major changes to medications with pretty serious withdrawal effects. Add to that - I was allergic to the new pain patch he prescribed - a opiate analgesic. To say the least all of this lead to a terrible combination of symptoms. I think everyone who reads this saw a bit of the mood effects. I say a bit because the tears that fell and the screaming I did at moments really wasn't accurately displayed even in what was a few very emotional posts.
In addition to all my emotions. I have had the I'm coming out of my skin, my skin is crawling, shaking (not my "abnormal" shaking), vomiting and diarrhea. The new meds brought unreal dizziness, vertigo, something. The patch pain med - woke me up early this afternoon feeling like it was literally burning a HOLE through my skin. The left side of my neck, ear was almost that itchy. I called the pharmacist - yes "Take it OFF now". Allergic reaction.....that's right! Does it ever END!
My afternoon was brightened with visitors. One visitor being my very sweet niece that's about 20 months. She and I shared Matzo ball soup (her new favorite baw soup). Hahaha. She is quite a dancer so while the grown ups were talking - I turned on Royal Wedding. She was in LOVE with Fred Astaire I think :) We just loved watching her enjoy the movie, the dancing.
For now visitors mean Brett can leave the house. It is not recommended or safe for me to be left alone for the time being.Brett didn't get "free time" by any means. He took one of the girls to a long overdue eye appointment and get my son picked up at school. They came brought ice cream home - Thrifty's my favorite Chocolate Malted Crunch and Mint Chip AND cones. Yay!
Tonight my sister came over - major heart to heart. Its so hard for me to accept the new realities I'm dealing with. Acceptance is still a challenge. I would love if someone would share how to come to acceptance. I'd really appreciate it commented here - I'm positive I'm not the only one that needs to learn acceptance in their life - whether now or when someone like me Googles and finds this blog. If it is too personal - I understand.
My sister (for those who don't know we are polar opposites) hence she is a major reality check for me during things like this. She pointed out its time to stop "Live Like You Are Dying". I've always been a type A personality. I guess I like to pretend I'm not but as she pointed out - apparently most people don't chose their child's name at 9 yrs old....she listed a myriad of other things that were all too true. Along with that I have this issue - how can I make everyone happy.
When our friend "Miah" passed away from Wagner's Granulomatosis in January 2007 - I thought I changed a lot. I took a risk at work and took a new position that came with many nay-sayers. It was also a major change from anything I had ever done. We'll have a whole blog on that. I got the tattoo I always dreamed about. I've gotten more. I have smoked hookah, and recently found I enjoy cigars here and there (yes THIS is "crazy" for me). I've actually hidden this from people so they don't think less of me. I'm 35 years old!!! OK, something else I need to change.
One last major change I'll mention for here is doing Pin-up. It was a major hurdle for me to say hey I want to do this AND I'm going too. I felt like I had to again really justify my decision. This again, NO MORE. I am so proud of the work I've done with modeling. Its the best thing I have ever done for myself. I don't plan to change that anytime soon. I am blessed enough that I do have Brett and also some amazing friends that lately have reminded me of this.
OK, enough for tonight. I'm going to focus on acceptance and how blessed I am for wonderful family all of us different which is what makes us fit together and some amazing friends that make getting though each day, sometimes minute easier to get through. And I'd like to report I laughed so hard tonight with Joe, Susan, Richard and Brett my stomach hurts. Amazing feeling. Love all of YOU!!!