As I live and breathe

Turned 50 and Dr. Appointments

2012-02-09T22:34:00.000-08:00

I have been running out of O2 very quickly. Within an hour the tank is empty, which makes going anywhere a pain. Today Bill and I took all the empties back and asked what the problem could be. She told me I am needing more oxygen! (shit)

So, I moved up on size canister to the C tank. The next size is the ones that come on a metal hand cart with wheels. I told her I have to hold off no matter what until after June, because I need to climb a mountain to go visit where my moms ashes are scattered. Then if necessary I'll go to the bigger tanks.

I have an appointment with my Primary care Dr. tomorrow. It will be a busy one. Since she went out on maternity leave.... they found the 8.2 cm cyst on my uterus, I had a cyst removed, I had an emergency room visit. I think my Thyroid is coming back again. I feel that same soreness in my throat and am having swallowing issues and cramps in my neck.

I have another appointment for more breathing tests on the 16th, then on the 20th I go to Medford for a horrendous bladder test. That will determine if my hysterectomy will be performed in Medford or Klamath Falls.

Besides that I need to talk to her about changing anti-depressants or seeing a counselor, or both.

That's my month in a schedule. I'll trade anyone of you.

My newest turning 50 photo. I just look tired.

We tore down a wall today

2012-02-03T19:47:00.000-08:00

Bill and I are clearing the slate and starting over. We both decided 29 years is too much to throw away.

When Life throws Rocks at you.
It is your Choice.
To make a Bridge or a Wall. ♥

This is what I posted on my face book page this afternoon. Most of the morning Bill and I spent talking, sometimes yelling and me always crying about what our plans are and why I want to move out. I told him I was almost afraid of loving him. I told him that words spoken hurt and I am not sure I can forget them or think that he will change. Of course, I told him I know so much of this is me and has all come closer to the surface since I have been sick. He continues to tell me that I have changes, that I have been cruel to him and Brittney.... I have been more honest I think. If I have been cruel... I feel terrible, because I have never been cruel to either one of them. They are the two most important people in my life.

So, I called my Primary Care doctor and left a message asking her to please find a counselor for me ASAP. That I am in great need to talk to someone.

I printed out the "letter to my family" that sits on the right hand side of this blog of mine... below the list of blogs.... and I asked him to please read it, that maybe he would understand more of what I am going through. I asked him if he would accompany me to my doctors appointments from now on. I want him to understand what a daily struggle it is just to dust and do dishes. Yes... some days I can get out and walk and come home and cook dinner. But those days are getting fewer and fewer apart. I push myself (I think) sometimes far more than I should. I try and come across as though there is nothing wrong with me, because to admit I can't do something is to admit I am getting worse.

I felt like I wanted to run and just be alone. To have just me to answer to. To not have to feel guilty when I see him doing dishes, or laundry or cooking or yard work. Really... what good am I? I would think anyone in their right mind would want to run when given the chance.
I cannot stand the me I have become. And, as a wife or partner, I have nothing to offer. I have hardly any sex drive, and it's been like that for some time now. I am not sure if it's the cannula around my face, my leakage of urine, my medications? I really don't know... but like I told him today... what is there left to be attracted to? I feel so damaged and used up.

After going over and over everything wrong we decided we can work on it and put all the words and past behind us and try again fresh.
This time with the understanding that he needs to come to therapy with me and have both of us on the same page as far as my disease, and my limitations. I think a counselor will do us both good and hopefully show us there is much to salvage.

Over the last month and all this with Bill and I ..... I have also learned (which should have been a big DUH!!) that I need to learn to treat Brittney like my daughter. We can still be close, but if I am having problems I need to find someone else to confide in. She has her own life and it is full right now. It won't mean we won't be as close, but it will mean that we can each lean on other people.

What a day it has been.

I am not sure when I will see a counselor, I will have to wait for my insurance to approve one and my Primary Dr. to find me one who she thinks will be compatible with me. I'll let you know.

A day that felt cursed

2012-02-01T21:20:00.000-08:00

This is partly an update on Bill and I, but also some new developments with my breathing.. my oxygen supplier.. and my Pulmomologist.

First things first I guess. Remember I had asked my Pulmonologist if he classified me as terminal and he said yes, of course. Today his nurse called and said that they had sent the necessary paperwork to HUD. Then she asked if I could come in and do a breathing test, she said that my oxygen supplier had mentioned that I am going through much more O2 tanks lately so she wanted me to take off my O2 for 45 minutes and then come in and do some testing. Well... that is fine and dandy, but being without O2 and "walking" anywhere is impossible. Well, not impossible but really stressful and my heart rate will begin racing. This happens at 2:00 tomorrow afternoon. I'll let you know how that goes. I am afraid that if they need to increase my O2, then I will be moved up to the larger tanks that come on wheels and are about 3ft or more tall. Another ego thing. At least now I can keep the O2 canisters in my handbags. A look at the bright side, I will once again be able to use my designer bags. :)

Next today... Brittney called and wanted to know if I could pick up Layla. She wasn't feeling well and Britt couldn't get out of class. So, I went and picked her up and tried to convince her if she was sick she had to lay around in bed and watch her cartoons.

While I was going back and forth taking care of Layla, I told Bill about my Dr. appointment tomorrow and how they had sent my "terminal" form into HUD. He says... he has been thinking and he only loved 2 women in his life... his grandmother and me.
He said he wants to change and make us fall back in love again. I told him yesterday when he made some remark about me staying here in the house for a year, that I couldn't. That he will get drunk next week or next month and I will once again be making up all my medical issues, that my mother will still be a way to get at me, that mentioning my family upsets me.. nothing will change. A sober man is one thing... a drunk man on pain meds is something different.

I knew this would happen the longer I am here. If I go back this time I am doomed to live with this the rest of my life because I will not be strong enough to fight and to move in the years to come.

With every time I turn him down or tell him it's over I cause pain. And, I didn't start this... and I don't want to be the one to hurt him. I will always love him, I just can't live with him. Maybe our perfect relationship will be to live apart and date???? Who knows.

I told him we can't talk about this in front of Layla and then the phone rang.

Britt's friend since 4th grade is like a daughter to me. She actually asks for me when serious issues come about instead of her own mom. Her and Britt decided to get pregnant together. Well, Beck got pregnant right away.... Britt and Fernando are still trying. About a month ago at an ultrasound appointment they found out he (the baby) had a heart defect that would mean surgery as soon as he was born then 3 more surgeries. And at around age 15 he may need a heart transplant. Of course we were all devastated and have been trying to help Beck hold it together. She is about the most sensitive child I have ever seen. I say child... she is 32. They just got back from a children's hospital in Portland after spending a week there they were optimistic. The doctors even told her to go ahead and make plans for a baby shower, start buying him clothes.... that they will be fine. She was going back to Portland the last month of her pregnancy so once born they could take him directly to surgery.

Tonight she lost him. So I went directly to the hospital. She is of course devastated as is her boyfriend (they have been together for 12 years or more). She had started to have contractions then they stopped. They want her to have a vaginal birth. She is suffering, not knowing if she should or could hold him once he is delivered, she goes from a feeling of relief that he wasn't born and she got to know him and bond with him... then felt guilt because of how she was feeling. I tried to tell her whatever she is feeling will be a range of emotions and she may change her mind numerous times. The doctor came in and said it may take 9hours, to 15 hours, to 2 days to deliver him.

I just feel so bad for them. Brittney is spending the night with her and doesn't have school tomorrow so can be with her. I told her I will come up in the morning and check on her. I am just heart broken for them.

I heard the word TERMINAL for the first time

2012-01-31T22:08:00.000-08:00

Yesterday I went to my appointment at the HUD office. She told me that with the economy the way it is they are taking very few new cases. Then she looked at my oxygen and asked if I "was terminal"? I have never thought of that. That word never crossed my mind. I said I honestly don't know, my condition is non reversable and progressive. She asked if she could call my dr. and I gave her my pulmonologist's # and who to speak with.

She told me that if I am terminal my name will go to the front of the list when they start new vouchers.

After we (my friend went with me) left I took Kathie home, then went to my doctor. I asked to speak to his assistant... she is who I usually see unless there are decisions to be made, or an exam to be done. I asked her if we could go into a private room. I told her that I was leaving my marriage and that I had to been to HUD and what the worker had asked me. She said.... I will talk to the doctor to make sure but Kellie.. "Of course you are".

It just made a difficult day frightening. TERMINAL! wow!

We had Layla here tonight so Britt could study for some tests and she seems to be doing fine. I think it helped her seeing us together. I started today going through closets and separating things... his bedding, my bedding... my paperwork out of the filing cabinet/ his paperwork. If I just do it little by little then what either of us or Brittney doesn't want I will sell. I may get a storage for a little while until I figure out what size place I will end up with.

So far Bill and I are doing fine. There has been a few uncomfortable situations, but for the most part life is going on as usual, which is good, but troubling. I don't want to give him the idea that things can go back to the way they were.

I am not strong enough to live with someone who doubts my illness, who blames me for being sick and who at times just wants to pick a fight. Between my breathing issues when I get upset and my anxiety it has been bad.

Separation hurts everyone

2012-01-29T20:30:00.000-08:00

I have little words to say that will ease pain or make anyone feel better.

Bill and I seem to be doing fine today. We even talked about the split of furniture, T.V.'s, dining table... household things that we have acquired over a lifetime together. We watched T.V. and even laughed during dinner. We both understand that it's over, and seem to have almost come to terms with it.

Still when I think of not seeing him everyday, or having him move away and out of my life forever seems unbearable. I can't have it both ways.

Brittney told Layla tonight and Layla called gasping/bawling and wanted to talk to her Papa. Britt told her that Grandma is moving out of the house and Papa will move away in a couple years. She said it will be like when they were in Idaho. Only Brittney isn't handling it well either.

This is on me. It was my decision that our "marriage" or being a couple had gone on long enough. I told Britt that I put this off while she was in school so she wouldn't have a broken home. I put this off after she moved out because I was afraid to be alone. I feel like if I don't stand up for myself now I will be lost forever. I am NOT being dramatic. That is how I feel. I told her I would be giving up the rest of my life if I didn't leave now.

Unfortunately, My needs are hurting my family. Funny how to save myself I have to cause pain to those around me who I love the most. I told Bill today I will always love him and care about him. I want to see him happy and living life like he always wanted to. I also want us to remain friends. Is that asking too much?

All I know is hearing Layla on the phone tonight and trying to reassure her broke my heart into tiny pieces. Then after Brittney got Layla calmed down and into bed she called me and told me she doesn't blame me but she feels like a child having her parents split up and it is breaking her. She'll get through it. We all will.

I go to HUD in the morning to see if I can get any housing. I'll let you know. The sooner this can be resolved I think the better for all of us.

Taking the next step

2012-01-28T21:35:00.000-08:00

Bill's birthday was yesterday. Brittney and I had bought presents and had invited a few friends over for pizza, beer and cake. Layla wanted to come over early in the morning (they didn't have school Friday) and make her Papa breakfast.

Thursday afternoon Britt, Fernando and I had been shopping for his birthday. When she dropped me off back at home is when he informed he was done. And, I agreed which I think pissed him off more.

Any way... I called Brittney after he closed his bedroom door for the night and told her to make up some excuse for Layla, but considering what took place that day I didn't think having Layla around us being tense and I wasn't even sure we would be speaking would be a good idea.
As it turned out his daughter Lexi called him to say Happy Birthday so I gently opened his door and handed him the phone.... then Priscilla pushed her way in. Soon after he got up and I wished him Happy Birthday and he seemed fine, almost happy. Which pissed me off and confused me because my eyes were so swollen from crying all night and I was almost freaking out wondering what would happen the next day.

Then when Britt went to school that day she dropped Layla off for a few hours while she went to school, then she came back at 5:00.

For his birthday he wanted a nice expensive queen sized flocked inflatable air mattress to replace the one we had so when we went camping this summer we could use it. He drank all day and most the night and was happy and carefree. Everyone here knew about it, I think he was the only one he fooled. At one point he grabbed my butt... then opening presents he opened the air mattress and said... this will be great when we all go camping, Kellie and I will sleep good on this. ????? I did not make eye contact with anyone. I felt foolish and a little mad.

Less than 24 hours prior to that he told me I was unlovable and he didn't love me, and was SO ready to move on. Now he was patting my butt making plans for our summer.

So everyone went home, he passed out, Layla spent the night and we stayed up playing cards and watching cartoons. When we got up this morning I fed Layla and she was playing for a while. Brittney called and asked if Layla wanted to go home and said she would come get her.

After the kids left almost as the door shut I looked at him and said... we won't be using that air mattress together. And, I would appreciate if you don't grab my ass anymore. That nothing has changed and just because he may have sobered up, what was said ... was said for the last time. I told him I wanted so much for us to respect each other and our time together, to be nice to each other, so today was almost pleasant.

Tomorrow I have an appointment with HUD to see about getting a 2 bedroom something that will allow me to keep Priscilla.

I will no longer hear I am used, damaged, deserving of this because I didn't listen to him and quit smoking. I will no longer be accused of making up illness's or not "pulling my share" around the house. I want the chance to be happy again. To prove to myself that I am worth something.

I am in such a confused state. I have love for Bill. At one time he was good to me, even when drinking. Then 15 or more years his drinking became a problem. He would get confrontational and argue anything. He would say terrible mean things, then the next day be perfectly find and even get pissy if I suggested he was out of control. When he was good he was lovable and caring and helpful. When he was bad, it was abusive. Never physically, just loud, and mean and scary.

It will be peaceful for me to be able to not be on the lookout for an angry housemate. I think I will be able to feel better about myself.

I have NO idea how I am going to afford to be on my own. I never planned for this and everything is in his name because of the medical divorce we did. So I guess once again I am at his mercy.

He says he will help me monthly. We'll see. I told him I wish him happiness with someone he can do all the things he wants to with. And, I really mean it. I think it has been over with me for so many years that I am O.K. with him moving on.

As for me. I am not sure if I trust love anymore. I am not sure I can actually love someone, or if anyone would even want to be with me and my disease. I have felt damaged for so long, how could I expect anyone else to see me any other way?

There are so many uncertainties right now. I am throwing my arms up and hoping I make the proper decisions and not hurt anyone.

I just want to be at peace for a while and be loved. And, I am not sure that will ever happen again for me.

A painful ending.

2012-01-26T20:13:00.000-08:00

I have not much to say tonight. I am heart broken and feel empty. My relationship with my husband (ex) of 29 years has ended. I am doing my best to keep things civil and not comment or get involved in bickering. I would like nothing better than to remain friends and just understand that we can't be together anymore. I don't think he feels that way.

I am now trying to figure out what to do about where to live. He seemed to think we could live together until he finishes work on the house (which has been going on for about 8 years) and we can sell it and split the proceeds.

I am trying to get on HUD housing and find a 2 bedroom apartment or duplex or something. I can't do yard work and I will have Priscilla with me.

I am afraid. I am kind of in shock. Even though it was mutual and I had been talking to my daughter about ending things, it just took me by surprise tonight when he said mean and hateful things. Attacking my mother who has passed away. Saying my anxiety attacks are fake and just for pity or attention. That I can do a lot more than I am doing.

Enough. I promise I will not trash him. He is a good, kind man. It's just a sad ending to a relationship that lasted over half of my life.

Transplant and depression

2012-01-24T22:27:00.000-08:00

The other day I was ready to give up and ask Bill to leave. It had come to that. I still am not ready to take all the blame for our troubled times, but I know a good portion of it is my depression.

I look back on my life and wish so badly I could make the right decisions. To live healthy, to raise Brittney in a non-smoking house. She has moments that she says she is ready to quit, but she isn't there yet, and she is turning 30 this year. She has a daughter who watches her smoke.... I am so afraid that the pattern of disease will just continue and continue. I am ashamed of myself for exposing them.

I did get some good news, or at least news that eased my mind a little. Every since the day years ago when my Pulmonologist mentioned Transplant to me and had me pick a hospital. Then the University of Washington told me that I would need to re-locate to within 2 hours of the hospital, I was freaked. I did not want to give up my home and my life here. After all I am supposed to recover and be able to come back to my previous life right? I didn't want to move to Seattle.

Well, I was picking up a new fancy regulator for my O2 tanks and the woman there (who treats me very well) said that one of her clients just was transplanted at Stanford Medical Center (my 2nd choice) and is doing well. They (the oxygen company) is supplying her with all her O2 needs, a hospital bed, a I.V. pole on wheels, pretty much any needs that the hospital doesn't supply they pick up. She said that her husband travels back and forth monthly, usually spending a week at a time there. The best part is that she (the woman at the O2 company) said that her insurance and mine are the same and that they have a contract with this medical center and not the University of Washington. I am kind of put as ease by that because Stanford was my first choice, I just didn't think we could afford to live there. The cost of living in the Bay area is outrageous.
I would need to go there for about a week and they have hotels that give rates to their transplant families, for testing and getting everything gone over. Then I would have an interview with the transplant team. They make the ultimate decision if I am a good candidate and if I am they will list me. I can COME HOME and wait!!! Yes, my insurance company will allow me to come home and Stanford is O.K. with that because once my name comes up, I will be Life Flighted directly to the hospital and prepped and into surgery with time to spare.

This had been like a burden sitting on me for a long time. I talked to Bill and he said that sounds good that once I am stable and doing well he can come home and then just visit once a month. Maybe even (depending on the time of year) Brittney could come for a visit, and maybe even my brothers. And, the best part is we don't have to re-locate.

I got a call yesterday from my Gynecologist, they have finally gotten a referral for some more testing in Medford (which is about an hour or so away, but over a mountain pass). They are supposed to call me to set up an appointment.

I am still doing alright on my weight loss. I am finding that if I weigh every day my weight will fluctuate, but if I just do it once a week I can see my progress. Besides that I can feel a difference in my stomach and legs.

I'll blog again soon, and hopefully I will find something wonderful to blog about. :)

Depression

2012-01-18T20:15:00.000-08:00

I have never felt so empty, misunderstood, angry or depressed than the last 3 days.
Yesterday Bill was moping around (it just seems to be a pissing contest over who feels worse... I gave up) and I told him just out of the blue... that I am not happy and asked him if he was? He looked shocked. I don't know how he could be surprised.... we hardly speak, he is gone most of the day to god knows where, then comes home... starts drinking then is off to bed by 6:00.

To make a very long a exhausting story short... I told him that I will not live my life like this. That I take as much responsibility at our failed life as he should, maybe more. I just don't want to go on like this. I want to be happy. To feel loved and safe. I do not right now, and haven't in a long time.
He didn't have much to say except for it was my fault. I asked him if he could honestly say he loved me and he never did answer. He asked me the question and I told him I do at times, but other times I don't even feel like we are friends. That even roommates would talk more, do more and be kinder to each other.

Yes..... he takes care of the things around the house that I can't.... but honestly I can hire that done. I do not mean to sound ungrateful because I appreciate everything that he does. However... there is a price to pay for that, and over the years I have just paid and ignored the fact I was living in a marriage I was not happy in. Then it got to be habit forming, like a comfortable pair of slippers. Yes, they have holes and flaws, but they always are there to cover you when you need it.

Anyway... I gave in AGAIN this morning and just asked to be loved. I told him if he couldn't do that to do the right thing and just leave. The day went on just like every other day. Him gone, me on the computer, him home with a drink or three and in bed before 7:00.

Then Brittney calls me and tells me I am giving up. I tried to explain to her that I am not. There are just some things I can't do. She wanted me to go sledding and I tried to explain I cannot do that with a cannula and hosing around me and my face. Not to mention being out in the cold and having cold air rush across my face. She actually got pissy with me and said "Don't say I can't." Has she not been paying attention to my health???? I GET IT!
I don't give up, and I haven't given in. I told her that if I were to give in it would be very easy. I would stay in bed like I feel like doing until 10:00 or 11:00, that I would take naps, I would just sit and not worry about my weight, about getting dressed, about pushing myself to even vacuum my own house. That just shopping is a OUTING, not just someone running to the store. She knows all this, she has been to the Pulmonologist with me, and even to the cardiologist.

I am So Above being frustrated at my life that I can no longer hold on alone. When I see my Primary Care Doctor again at the end of this month or the beginning of Feb. I am asking for a referral to a counselor. I need to find happiness somehow. I will never be suicidal, but I can't imagine going on day after day the way I have been.

I love Brittney more than life itself and I don't blame her. She is trying to do the right thing and push me to do more and keep moving. It's just right now I feel like if I am pushed I will lose myself.

I went to the Gynecologist yesterday to talk about the results of the ultrasound. He wants me to see a urologist before anything else is done and go through this certain test. Well, the only Urologist in Klamath Falls has left, and the nearest town will not take my insurance. So, he wants me to go to Portland which is about a 8 hour drive from here through the snow and bad weather to have this test. Then depending on the results either whomever sees me will do surgery on my bladder and then do a hysterectomy or I will be sent home because my bladder problem can't be fixed and he will do the hysterectomy. Nothing with me is easy. He said the tumor growing on my enlarged uterus is about the size of a small cantaloupe. Awesome... remove it and there is weight loss!

I started this P.I.N.K. program and have been doing everything it asks...... except that I eat everything I am not supposed to at night before I go to bed. Even with that I have lost nearly 5 pounds. I am trying to be strong and fighting my night cravings. I'll let you know how that goes.

So... welcomed to my life... wanna run now?

10 Days, 4 Pounds

2012-01-15T19:10:00.000-08:00

I had to look back at my beginning day. I have lost a total of 4.2 pounds in 10 days. I am still staying on the reset for another couple weeks. I want to feel comfortable enough with my good eating habits before I start the next chapter.

There will be a few days coming up where I will be off the diet. One Bill's Bday is the 27th of this month, and my Bday is the 7th of next month. We will celebrate with family and cake and presents for Bill's. But, I am turning 50 and I want to remember it somehow. A good meal with friends, a movie, a night out. Something other than sitting in this house.

I have been weighing myself every morning on this diet and some days I will gain 8 ounces to a pound, and other days I will lose 2. So... I think I will begin to weigh myself once a week. I have noticed that this diet like every other one I have been changes my digestive progress. So I am sure day to day the pounds will go up and down.

Another E.R. Visit

2012-01-12T21:01:00.000-08:00

This will be quick. I am feeling bad.

Yesterday Bill and I went grocery shopping and about half way through I told Bill my chest was feeling tight. By the time we got home I couldn't take the pain anymore. As it was Britt was on her way to the house so she took me up to the hospital and I spent 5 hours in the Emergency room to have them tell me I was having an anxiety attack.

I know these are real, but it makes me feel like I am one of those nervous types of women who can't handle stress or problems and get the vapors. I am a strong person and I can handle pain.

This pain was mind blowing. Like someone had a hold of my chest ripping and twisting. They finally gave me knock out medicine and sent me home to sleep it off.

That worked fine until around 3:00 this morning and I have been up every since. Today is better, but my chest is on the verge of incredible pain. Does that make sense? It seems like one big cough, one twist or pull and the pain will return. Any way, I spent the day reading and napping.

A note to self

2012-01-08T22:47:00.000-08:00

I just wanted to note to myself for my doctors visits......

For the last 2 1/2 weeks or more (months I think, but getting worse) I have had leg cramps, feet cramps, toe cramps... and cramps in my neck and shoulder that wake me up at least 10 or more times a night. I have to jump up from bed and walk around, or jump up and down, or stretch my feet, or bend and stretch my neck and shoulder. It wakes me up before... I can tell by the movement of my foot or neck that it is coming quickly and soon I will have to get up and move.

I have tried and am still eating 2 banana's a day. I have began to drink many ounces of water a day. It happens if I have been up walking through the store all day, or at home standing in front of the counter cooking, or just sitting in my chair all day. So... there is no pattern to it.

I also think that because of my lack of exercise my back is beginning to bother me more. I have pain meds and take the prescribed amount... but they are just not working. I have noticed my back laying in bed starts to hurt and I am constantly moving around all night.
My restless leg syndrome is getting worse, or the medicine has outlived it's usefulness.

My breathing has not improved at all. My lungs feel so tight. It is hard to get air out at all. It seems I can breathe in alright, well I still can't take a deep breath in all the way... but getting air out seems impossible.

I have been getting dizzy spells, sitting or standing up. My memory issues still are concerning to me. Bill swears I use it to my advantage, but it's bothersome and scary to me at times. I would swear my life I hadn't said something, or done something... and Bill tells me different.

I need to keep notes on the things that are bothering me, wrong with me, are ailing me... for when I see my primary doctor again. She is coming back to practice at the end of the month.

I am going through the phase where I am sick and tired of this. It makes me selfish. I get so wrapped up in just getting through the day that I neglect my friends and family. I am normally not a selfish person.
I just want to scream at times.
Bill and I have been struggling again. For no apparent reason, other than I think he needs a break as a caregiver. I have been trying to talk him into going and visiting a friend, or his daughters, do some golfing... or just hang out.
He told me today or yesterday that I couldn't take care of myself anymore. That may be true... but I didn't want to hear it.
It is just a reminder of how much ability I have lost.

There are days when I go to the store, where I actually glance over at those carts. I swear I will not get in one. I will stay home first.

I have an appointment in February with my Pulmonologist and they will run their tests to see how my breathing is doing. It's called an FEV1 test. And the number will tell them if this is progressing and what the next steps will be.

I also in February will turn 50. My god, look at what has become of me!

Laughter may be bad for lungs

2012-01-08T11:50:00.000-08:00

COPD PATIENTS WITH SENSE OF HUMOR FEEL BETTER, BUT LAUGHTER MAY BE BAD FOR LUNGS

Ohio State University Research News

COLUMBUS, Ohio – Having a sense of humor is associated with improved emotional functioning and an enhanced quality of life among patients with a chronic lung illness, but the actual act of laughing out loud can reduce lung function, at least in the short term, research suggests.

The study evaluated humor and laughter in patients with chronic obstructive pulmonary disease, or COPD. Participants who exhibited a greater sense of humor were more likely to report fewer symptoms of depression and anxiety and better quality of life, and tended to report that they had experienced fewer respiratory illnesses in the month before the study.

But patients who watched a 30-minute comedy video and laughed during the viewing had lower pulmonary function afterward than did patients who watched a home-repair video that did not prompt laughter.

COPD is a chronic, progressive disorder characterized by difficulty breathing, and especially in expelling air from the lungs. It is the fourth-leading cause of death in the United States, affecting more than 12 million people, according to the Centers for Disease Control and Prevention. COPD patients are at increased risk of experiencing depression, anxiety, a diminished quality of life and frequent respiratory illnesses.

The pattern of findings in this research suggests that appreciating and perceiving humor may have a different effect than laughing aloud for patients with moderate to severe COPD, researchers say.

“This study shows that humor is really more complex than people make it out to be,” said Charles Emery, professor of psychology at Ohio State University and senior author of the study. “Yes, humor definitely has benefits, but the behaviors associated with humor in fact may not be good for all people all the time – which is a useful thing to know.

“Because these patients are at risk for depression and anxiety, one implication of this study would be that encouraging or even teaching people to use humor as a way of coping may actually be a novel way of enhancing their well-being.”

The research is published in the current issue of the journal Heart & Lung.

Kim Lebowitz Feingold, lead author of the study, performed the research for her psychology Ph.D. dissertation at Ohio State. Now director of Cardiac Behavioral Medicine at the Bluhm Cardiovascular Institute of Northwestern Memorial Hospital, Lebowitz Feingold said the project grew from her interest in the field of positive psychology.

“We wanted to look at positive attributes or traits associated with improved physical or emotional health. I’ve long been fascinated with the idea that laughter and a sense of humor can be positive for well-being,” she said.

Previous research had suggested that humor is beneficial to healthy adults because it can improve mood and strengthen immune function. Laughter also had been characterized as a behavior that may help expel stale air from the lungs. The researchers sought to determine whether the benefits of humor and laughter could extend to people who suffer from COPD.

“We know the negative emotional consequences of COPD. So I thought it was an ideal condition to serve as the focus of an examination of the potential benefits of humor and laughter,” said Lebowitz Feingold, also an assistant professor of psychiatry and surgery at Northwestern University.

Forty-six COPD patients participated in the sense of humor portion of the study, and of those, 22 participated in the portion of the study that the researchers called “laughter induction.”

All participating patients completed a number of questionnaires to assess their sense of humor, psychological functioning and health-related quality of life, as well as a brief interview about recent infectious illnesses. The assessments included the Coping Humor Scale, which measures the degree to which someone uses humor to cope with stress, and the Situational Humor Response Questionnaire, which counts the frequency of smiles, laughter and other so-called mirthful behaviors in a variety of situations. Measures of depression and anxiety symptoms were used to evaluate psychological functioning.

In the laughter induction, patients completed pulmonary function tests, and reported their mood and the severity of their shortness of breath symptoms immediately before and after watching a 30-minute video. After being randomly assigned to either a neutral or humor condition, participants watched either a neutral instructional video or their selection of one of three comedy options: Abbott and Costello, Bill Cosby or a segment of funny home videos.

As expected, the COPD patients reported more impaired psychological functioning, lower quality of life and above-average anxiety in their daily lives compared to national data on these symptoms in healthy adults. Patients also had reported an average of five sick days on which they experienced infectious illness symptoms in the previous four weeks.

But on average, the patients also reported that they used a sense of humor in their daily lives. Out of a possible score of 24 on the Coping Humor Scale, this patient sample’s average score was 19.3. As a group, they were less likely to report use of mirthful behaviors to express humor, scoring 56.6 out of a possible 105 on the Situational Humor Response Questionnaire.

An analysis of association between the patients’ sense of humor and well-being measures suggested that the higher their score on the sense of humor scales, the lower were their symptoms of depression and anxiety. A sense of humor was significantly associated with enhanced psychological functioning and better quality of life. And though the relationship was not as strong, a higher sense of humor score also was linked to fewer recent sick days.

Emery noted that because of the nature of the study, the researchers can’t be certain which came first – the sense of humor or the better well-being.

When it came to laughter, however, the results were a surprise. Patients watching comedy videos did laugh more than patients who watched instructional videos, as expected. But follow-up pulmonary tests showed that those participants who laughed also had more air trapped in their lungs afterwards, a sign of reduced lung function.

“During laughter, we’re expiring more air than we’re inhaling so it’s a potential way of ridding our lungs of stale air. COPD is characterized by this increased air trapping, so our hypothesis was that laughter would reduce some of that trapped air,” Lebowitz Feingold said. “But in hindsight, the findings make sense. With laughter, people also are introducing an increased amount of air into their lungs compared with a normal breath. These patients have trouble getting the air out, so they are taking in more air with laughter, but they cannot easily expire that air, leaving them with increased trapped air following laughter.”

She noted, too, that the study measured only the acute response to laughter.

“We can’t tell if this effect is cumulative, how long it might last, or whether it has any impact on physical health or pulmonary function long-term,” she said.

Co-authors of the study include Sooyeon Suh of the Department of Psychology and Philip Diaz of the Department of Internal Medicine, both at Ohio State.

I wanted to post a note to this. Since diagnosed I have had opportunity to laugh and be happy and didn't notice any change. The thing is it was just a ha ha laugh, not a belly laugh.

At Christmas on two occasion's I had an actually belly laugh, no stopping, tears streaming, can't stop... kind of laugh and noticed that even while I was out of control laughing my lungs burned. It was like I voided them of all air, but couldn't stop laughing. It was scary. I have a problem emptying my lungs anyway... and when there is no air there it is frightening. I excused myself to the bathroom both time with my O2 until I felt better. But after both episodes I felt queasy and dizzy.

So... is laughter the best medicine? I guess yes, unless you have severe Copd.

Some very good information on Oxygen usage

2012-01-07T13:49:00.000-08:00

Oxygen Treatment for Chronic Obstructive Pulmonary Disease (COPD)

Oxygen treatment increases the amount of oxygen that flows into your lungs and bloodstream. If your COPD is very bad and your blood oxygen levels are low, getting more oxygen can help you breathe better and live longer.

There are several ways to deliver the oxygen, including:

Recommended Related to COPD

COPD Diagnostic Tests: Pulmonary Function, Spirometry, and More

Doctors may make a diagnosis from reported symptoms and findings from the physical exam. For many conditions, however, a diagnosis cannot be made without conducting tests. This is especially true for lung diseases. Individuals with COPD are often diagnosed with "pulmonary emphysema." This means the air sacs, or "alveoli," of the lungs are damaged. These tiny sacs cannot be seen directly in a physical exam. So, health care providers depend on a series of tests. These tests help them diagnose...

Read the COPD Diagnostic Tests: Pulmonary Function, Spirometry, and More article > >

Oxygen concentrators.
Oxygen-gas cylinders.
Liquid-oxygen devices.

You don't have to stay at home or in a hospital to use oxygen. Oxygen systems are portable. You can use them while you do your daily tasks.

What To Expect After Treatment

Long-term oxygen treatment may improve your quality of life. It can help you live longer when you have severe COPD and low oxygen levels. You may notice less shortness of breath and have more energy.

Why It Is Done

Long-term oxygen therapy is used for COPD if you have low levels of oxygen in your blood (hypoxia). It is used mostly to slow or prevent right-sided heart failure. It can help you live longer.

Oxygen may be given in a hospital if you have a rapid, sometimes sudden, increased shortness of breath (COPD exacerbation). Oxygen can also be used at home if the oxygen level in your blood is too low for long periods.

Long-term oxygen therapy should be used for at least 15 hours a day with as few interruptions as possible. Regular use can reduce the risk of death from low oxygen levels.¹ To get the most benefit from oxygen, you use it 24 hours a day.

An arterial blood gas test should be done first to see if you need oxygen. You may not be able to get Medicare reimbursement for home oxygen therapy without this test. If your test results do not meet the following guidelines, Medicare may not pay for home oxygen therapy:

Arterial partial pressure of oxygen (PaO2) is less than or equal to 55 mm Hg (millimeters of mercury, a measure of pressure).
Arterial oxygen saturation is less than or equal to 88%.
Arterial partial pressure of oxygen (PaO2) is between 56 mm Hg and 59 mm Hg, or oxygen saturation is 89% and you have:
- Evidence of right-side heart failure due to breathing problems (cor pulmonale).
- Heart failure.
- An increased number of red blood cells (erythrocytosis).
Arterial oxygen saturation is greater than 88% when you are resting but becomes less than or equal to 88% when you are exercising or sleeping.

How Well It Works

Several studies show that using oxygen at home for more than 15 hours a day increases quality of life and helps people live longer when they have severe COPD and low blood levels of oxygen.^1,² Oxygen therapy has good short-term and long-term effects in people with COPD.³

Using oxygen may also improve confusion and memory problems. It may improve impaired kidney function caused by low oxygen levels.

Risks

Generally, there are no risks from oxygen treatment as long as you follow your doctor's instructions. But oxygen is a fire hazard, so it is important to follow safety rules. Do not use oxygen around lit cigarettes, open flames, or anything flammable.

Oxygen is usually prescribed to raise the PaO2 to between 60 and 65 mm Hg or the saturations from 90% to 92%. Higher flow rates usually do not help, and they can even be dangerous.

What To Think About

People using oxygen should not smoke.

Do not use oxygen around lit cigarettes or an open flame. If you or those who care for you smoke, or if there are other risks for fire, it is important to consider oxygen treatment very carefully because of the danger of fire or explosion.

You may need oxygen in certain situations, including:

During exercise. For some people with COPD, blood oxygen levels drop only when they exercise or are very active. Using oxygen during exercise may help boost performance and reduce shortness of breath for some people. But there are no studies that show any long-term benefits from using oxygen during exercise.
During sleep. During sleep, breathing naturally slows down because the body doesn't need as much oxygen. Sleep-related breathing disorders are quite common in people with COPD, and many will have significantly low blood oxygen levels during sleep.
For air travel. The level of oxygen in airplanes is about the same as the oxygen level at an elevation of 8000 ft (2438 m). This drop in oxygen can really affect people with COPD. If you normally use oxygen or have borderline-low oxygen levels in your blood, you may need oxygen when you fly. Traveling with oxygenusually is possible. But it is important to plan ahead before you travel.

I love my new Kindle Touch

2012-01-06T19:41:00.000-08:00

I am trying to get off caffeine. I am wondering if that has anything to do with my tachycardia? Anyway, the last 2 days I have had killer headaches. I have been drinking decaf tea with liquid Stevia, and also made some decaf Green Tea sweetened with the Stevia.

I went to the doctor for a follow up for my cyst. He said it looked great and should heal very well. While there I asked him how long caffeine withdrawal lasts? He asked why, and then said well, you could take Excedrin because it will take care of my headaches and it has caffeine which will stop the headaches. Hmmmmmmm...... to me this sounds like chasing one condition with a substitute that is the condition you were giving away in the first place. lol

Bill bought me a Kindle Touch for Christmas. It has taken me some time to get used to it, but now I love it! The last two days Bill hasn't felt good and has napped a lot, so I have been reading. No T.V. on, no Stereo on... just silence and a good book.

I have had a few bad days lately. A heavy chest, air not quite getting to where it needs to go, and these headaches. So, I was almost grateful that Bill was sleeping most the day. I don't know about anyone else, but when I am around people and I don't feel well, I put on a good front and get up and do things I don't feel like doing at all. So, on days that I can just curl up with a blanket and a book I cherish the day. It just doesn't happen often. Either Bill is around, or we have Layla or we need to go somewhere.

One of these days I will need to have another talk with Bill to remind him that I just can't do what I used to all the time. He does SO much anyway that I feel terrible and very guilty when he is up doing laundry and I am sitting. So I will get up and vacuum or dust, or change the beds.
This is part of the disease I hate the most. It's watching someone work while I just sit here. Some days I just sit and tell him I am sorry but I just can't do much today. But other days even though I am struggling I will still try and match his work.

Priscilla is getting cabin fever and will just run and jump from couch to reclining chair and do circles that way. It scares the poo out of the other two dogs. I need to get her out walking, but it's been so cold in the mornings and air quality warnings in the afternoons. I may have to find a dog walker. She still is my clown. For no apparent reason at 4 or 5 a.m. she will sit up and start talking to me. Kind of a chortling sound. She will keep it up until I answer her, then quiet down for a few minutes and start up again. The other morning I just gave up trying to go back to sleep and turned on the early news and sat up and chatted with my dog. I'll bet not many people can say they do that?! lol

If I am going to be honest, I can have no secrets

2012-01-05T14:20:00.000-08:00

This is a blog I NEVER thought I would ever do. So, squint... or look away... or scroll down if you can't take it. I know this is huge (notice the pun) for me!

So... Here is the part I can't believe I am doing.... I am posting before pictures of me online for the whole world to see. This is huge... I don't even like to see myself in the mirror getting dressed every morning. I rarely think of myself as this big because I honestly look in mirrors from my waist up and because I have gained so much weight... when I look down I can't see over my boobs anyway.

Here we go.......................................drum roll.................................................
I am literally breaking out in a sweat showing those. That is me. I hope the next "after" pictures will make me proud. Break the shame pattern that all overweight people have. I want to feel better and be healthier for myself. I'll bring you along the journey. I have nothing else to hide.

This blog was meant to be honest. To hide nothing, to show the entire effects of Copd.... so How could I leave out a large (another pun) part of it? I would be telling a lie, and that's not what this is about.
Copd seems to go one of two ways. Either you need to gain weight, or you need to lose it. Both I hear are equally as hard.

So... In December Brittney bought a diet book after seeing it on Dr. Phil and The Doctors. It's called P.I.N.K. Method and it stands for ....Power. Intensity. Nutrition. "K"ardio.
Pinks theory (very simply put) is that "the proof is in the plants". That for years scientists and The American Cancer Society Researchers studied nearly 80,000 healthy adults for 10 years. They found that men and women who munched on 19 or more servings of vegetables a week didn't develop belly fat, while those who ate meat more than 7 times a week did. And, if you think about it 7 times a week isn't much considering that you eat a minimum of 23 meals per week.
Protein to your body is like a repairman. It helps maintain muscle and healthy tissue. It helps the immune system remain strong. It gives us energy.

There is good protein and bad. Of course Fish, Foul, Lean Beef and Pork, Non fat Yogurt (especially Greek) and nuts and whole grains are good sources of protein.

So... Here is the skinny (I am full of pun's today!) on this diet is this.

Part one is called The reset. This you are on depending on your weight only a certain amount of time. I will be on it 14 days.
"The reset is geared for fast weight loss prior to starting the PINK workouts." "How fast?" In this 14 day period I should lose 10 pounds or more.

After this portion of the diet, exercise comes in. Even for me (who can't exercise right now) there is a plan. Being a little more active around the house, drinking my water.... 90 ounces a day. Yes NINETY OUNCES! This amount will go down as my weight does.

So, now I am getting up in the morning and drinking a cup or two of decaf tea (yes, I gave up caffeine also) then at around 10:00 a.m. I drink a smoothie made from Coconut Milk Fat free/Dairy Free, protein powder and a handful of strawberries and blend it. It actually is almost too much to drink. It keeps me full until afternoon. Afternoon I am supposed to eat 4 ounces of protein and veggies. At dinner again 4 ounces of protein and veggies. All day and evening I can snack on all the veggies I want. Morning is the only time I can have fruit.

I reset my weight loss counter to zero and I will post my loss or gains. I am hoping this works. I was not made to be overweight. I have a small person living inside this body. And, not just for vanity... It will help my breathing greatly. It will hopefully allow me to get up and walk more, to exercise in small increments again. And, I just want to feel better and more in control of myself.

I have been dieting for 2 years now and only lost a total of 26 pounds. It shows how out of control my eating habits are. I can make a ton of excuses for myself and some of them are valid. Like other people, my exercise is so limited. Yes, I can and should sit in my chair and do arm lifts with light weights (which I own). I should not eat late night meals. I really don't have a chocolate or ice cream or candy habit. I have a cheese and bread and meat problem. As outlined in this and every other diet those are weight loss killers. So, I need to find a way to eat them in small quantities. I used to drink whole milk and a lot of it, and I gave it up for skim milk. I used to eat a lot of butter and cook with it. Now I use Canola oil butter which is half the fat and calories and to cook with I almost exclusively use olive oil.

I just have bad eating habits and for years I got away with it because I was active, or I substituted smoking for food. Now I am on my own and now I NEED to make permanent changes. Wish me luck.

Happy 2012, a year of hope?

2011-12-31T22:59:00.000-08:00

This is my New Years Eve blog. So much promise in the New Year. So many uncertainties. I am sure there will be struggles, success's and failures. I hope to remain me. It seems the more my disease progresses the less of me I recognize.

I have a difficult time sometimes talking when they are in another room. And, repeating myself over and over again is maddening.... I will eventually run out of air or my voice gets raspy really quick. I am also finding in groups of people trying to talk over the noise I just can't do anymore. Yelling is out of the question.

I used to be so quiet and easy going and now I find it hard to hold my tongue. I figure if I need to stand up for myself now is the time. Those around me aren't used to that.

I am finding that since I have been diagnosed there is more wrong with me. I know that is because with the diagnoses came insurance for the first time in a long time. I have had a laundry list of things found, things removed, things being watched, lung issues, heart issues, thyroid issues, breast issues and uterus issues. I am not sure what will be next?
I was explaining to someone that I can handle my Copd and Emphysema most of the time without too much surprise. What I am finding impossible is these surprises that need to be dealt with. Like I told my Primary Care Doctor when she asked me about this fibroid tumor on my uterus.... she asked if it came down to watching it for it's growth or just removing the uterus? And, I answered I would prefer to remove my uterus because that would be one less thing to worry about returning or getting worse.
It's the small things that get in the way.
I can usually plan events around my Copd. Yes, I may be having breathing issues, but usually I can go sit and watch a concert, or if the weather is right... go for walks. I can almost always go to the store and walk around. I can go visit. I just pack my oxygen around with me and be wise enough to check to make sure I won't run out before I can get back home.
It's these small things that bring me to a stop. Even this small cyst I had removed, had me at home a couple days. Not because I couldn't take the pain, but because of the location. For men imagine a hole right in the middle of your chest. Every time your arms move... so does that area, every time you turn... so does your chest. It just was in a location that is uncomfortable.

I read a nurses posting today... I happen to know this nurse works on a transplant floor.

He wrote....."Happy New Year to all! Was hoping for a low census day-but alas it is not to be. I will be spending my New Year's Eve ministering to the unwell, indisposed, unhealthy, diseased, ailing, afflicted and otherwise infirm patrons of the ( ) Medical Center".

I answered..... "Happy New Year to you. And bless the unwell, indisposed, unhealthy, diseased, ailing, afflicted and otherwise ill patients. Someday I will be one of those."

I was pissed because it seemed to me he was "one of those nurses" who bitch and moan about their patients. If that is the case, then I think it's retirement time. Especially on the transplant ward where the patients need extra care and the families need extra re-assurance. I have heard him complain before about the families thinking the nurses are hired for them.

It infuriated me. One day I will be there. Now I am rethinking that transplant center for several reasons. That just locked in my decision.

I have hope for this year. I have plans and I think now that Bill has seen a decline even he is on board with doing a few things. Getting out and doing a little sight seeing, some short distance traveling, some camping (where they have electricity for my concentrator lol), some fishing. Just doing. Maybe visiting some family. All of my family with the exception of my big brother have never seen me with oxygen. I want the chance to see them before I get where I can't travel anymore. I don't want our only visit to be in a hospital room.... which for some reason is the way my family works. We all love each other, but most of us won't travel to see anyone. That's another blog all together.

Bill has mentioned that he has noticed my decline. It is almost comforting to know that someone else notices. That I am not just trying to bow out of life. I do what I can, go where I can and live the best life I can. I sometimes feel like I am not trying hard enough. That I can do more. I have realized that I have to be careful, because the last 3 times I have pushed myself the worse my breathing gets, and it doesn't recover to where it was.

The words of my Pulmonologist to Brittney's question about Copd rings in my head sometimes....... She will go along just fine then get a cold or have an exacerbation and will never quite get back to where she was. Then she will go along again until another event happens. This year I had several events. I am hoping 2012 will be kind to me.

Happy New Year everyone. May we have a Happy and Healthy 2012.

Not for weak tummy's

2011-12-31T12:01:00.000-08:00

I decided (I don't know why) that I wanted to keep a picture of the wick and cyst. I seem to be getting these more and more. The doctor said some people do, and some don't. I asked if I wasn't scrubbing hard enough? He laughed and said no. For some reason the skin will take a blemish and begin to close over it and then forming a pocket and the blemish becomes like a seed that is encapsuled. It can stay like that forever and not become a problem, or like me...... everything on my body is turning against me and these become infected and need to be removed.

The wick is the white-sih part sticking out. My skin around it is burned from the tape. Today I just put a large bandage over it. We'll see how that does.

I will blog again later tonight, and I promise it won't be gross! lol

New Years Eve, Eve....

2011-12-30T21:41:00.000-08:00

Happy New Years Eve, Eve. I can remember when I was in my 20's this night would be the beginning of celebrating the New Year.

These days I am never awake for the ball drop. I am usually in bed asleep by 11:00 or 11:30.... some nights much sooner.
We have no plans. We usually don't. I kind of miss the days when we would have friends over. I couldn't do it right now, I don't have the stamina.

An update on the cyst. It is healing really well. Every morning I get up and shower then before I put on a new bandage I cut off 1 1/2 inches of the wick. Maybe a few more mornings and the wick will be gone. Really the only painful part is the tape. I am even using paper tape for sensitive skin and it is blistering me. The bandage is in a strange location flat on the bottom where the hole is and rising on both sides, therefore trying to find new spots to put the tape is difficult.

I went today to Ross (a discount clothing and home store) and bought a large canvas painting and 2 smaller framed ones for the living room. I want to bring more browns and reds into it without being gaudy. I think I did alright. On the first I am going back to purchase one more canvas one for a short long wall then I'll be done.
I also bought 5 small plants. My goal is to get a better air quality in the house. Some freshness. The carpets have been shampooed, the drapes washed and the couch cushions vacuumed and washed.
I want to pain the living room.....
I have sworn that someday I am going to paint the walls again.
Last time I picked out a sample it was called wooden spoon... a tan/beige/brown color. We bought 4 gallons and started painting. About half way done I told Bill this is not drying darker! He just kept saying it will when we get finished. Well, it turned out a pale shade of pink or oyster. I can barely stand it!!

In October I bought paint for my room. Chocolate Brown for the walls and Robins Egg Blue for the ceiling. I have a deep brown fuzzy comforter and powder blue sheets. I can't wait to get it finished. We have lots to do. Actually, Bill has most of it to do. I just do what I can (which isn't much). The summer/fall we finished the kitchen. We did the dining room last year. This year I want to concentrate on my room, the living room and in the Spring he is painting the outside.
This is what happens when you have a house that was built in the 20's and soaks up paint like crazy. The walls inside are lathe and plaster, and the outside is just wood siding... I am a woman who doesn't know much about siding... I would guess it's 1x12's??? Anyway, it's time again to paint it.

Injections hurt!

2011-12-27T23:43:00.000-08:00

I followed directions and took all the antibiotics for my cyst and went in today for a follow up appointment.

Soon the doctor came in, looked at it and instructed the nurse he would need 4x4's, Lidocaine and 18 ( I think) gauge needles. He had me take off my shirt and bra and placed white paper over most of my breasts and started injecting Lidocaine in a circle around my cleavage. I lost count after 14 injections, there were more, but by that time I was trying to remember to breath. He reminded me that he hadn't heard my O2 interrupter go off in quite some time. It isn't a good idea to hold ones breath when they have low oxygen levels anyway. lol

Finally he began to cut and I felt snipping and pulling and digging. He said he was leaving a "wick" inside to help it continue to drain. He then put a pile of 4x4 pads over it and taped it up. He gave me a paper bag full of pads to bring home in case it kept bleeding. I thought, how could it bleed through all this?

Well, tonight it is bleeding through. Not bad yet.... I think I will wait until I change it. I go see him again in the morning, and I am hoping he can change the bandage.

Here it is as of now...

He tells me that it shouldn't scar badly. After the Lidocaine wore off this afternoon, my furthest thoughts were scarring! lol

Layla spent the night tonight and we played some of her games she got for Christmas. Her and Priscilla went to bed early tonight.

I called Gail (my friend who was diagnosed with lung cancer) and she just had the brain scan today. She promises to let me know when the get the results. So far they are talking about 8 weeks of radiation and chemo. I wish I could go down there but I think I am looking at having my uterus removed in January sometime.

I'll keep you updated on how everything goes.

Not one of my best days

2011-12-22T19:25:00.000-08:00

Layla and I played around this morning. She read me books and did a pretty good job of sounding out some big words. Then she started to draw Christmas ornaments and write me cards. They are learning to write by sounding out words so my cards looked something like this...............
Der granmaw I hoop you have a speshl crismus.
P.S you or my life.
Of course this melted me... but I had to tease her for her spelling and had her get me another piece of paper so I could write it out the right way. pffft. Why don't I just leave these moments alone?! I hurt her feelings and she said... Grandma I think it's time for me to go home now.
As it worked out I had just enough time to get her home and get to my appointment at the hospital, then some grocery shopping for Christmas Eve. dinner.

I had my trans vaginal ultra-sound. She showed me my uterus, then moving the screen 3 times she showed me the enormous tumor growing around it and pushing up on my bladder. She was showing me the blood supply of it and said because of it's size and because it had so many blood lines, it would most likely mean that my uterus would need to come out.
Then she said what they usually do... of course a doctor will need to read this and get back in touch with you, most likely after Christmas.

I have a feeling a surgery is in my New Years future.
I picked up the antibiotics for the cyst I have in my cleavage and last night and this afternoon I have been keeping a hot pad on it. All it is doing is making it more sore.

So.... I hope tomorrow's blog is positive and I can just put this out of my mind until the time comes to deal with it. It is just a surgery. This is not life or death. It just is... one more thing. I feel like a carnival act that grows all these weird things. Or those ladies you hear about on the T.V. that had a 100 pound growth they found mysteriously.
This is not one of my better nights. I am going to medicate and go to bed. More tomorrow.

Just one more thing

2011-12-20T20:58:00.000-08:00

Let me catch you up to date now that I have my computer back. It's nice to have a laptop... but I get so tired of typing and then suddenly having everything disappear.

My primary doctor, I mentioned...went on maternity leave. She had her baby (a boy) on Thanksgiving. She won't be back to work until the latter part of January. In the meantime I had one of her referral appointments with the gynecologist. It was regarding my bladder leakage and basic pain in that area. After a lengthy discussion and question and answer period and exam, he scheduled a trans vaginal ultrasound. It will be this Thursday. Evidently my Uterus is enlarged and there is a mass growing on it.

He had me bring home what he calls a "hat". It's use is No Where near the head. You urinate in it and measure the intake (or is it out-take?). For 3 days I had to keep track of each time urine leaked, everything I drank, and how much I went to the bathroom.

I was so happy to throw the "hat" away. I mailed the results to him and I am sure after this Thursday's ultra sound he will call me after Christmas for a follow up. He did say that if surgery was required he was sure it wouldn't be until after the first of the year. Which, is just fine with me.

Also, I am not sure if you remember but this summer I had a cyst removed on my shoulder. I went to the walk-in clinic today with anther one that is infected between my cleavage. I had my doctor in July try to get permission from my insurance company to remove both of them at the same time and they said no because the chest one was not infected.
It makes no sense to me that they wait until it is inflamed and causing pain before they will remove it. So, I have antibiotics for a week and then I am supposed to go back if it hasn't drained or went away. It is hard as a rock and the size of a dime, so I am thinking it's not going anywhere.

See????? I have so much wrong. My body at about age 35 decided to turn against me.
I told the nurse today as she was trying to look over my records that I am used to the Copd and Emphysema. I can handle the oxygen and all the meds.... but it's the little things now that drive me crazy. It's like one more little tiny thing wrong that just is too much. She said she had cancer and chemo a few years ago and knows exactly how I feel. It made me feel better to know I wasn't being a cry baby.

Thank you for your prayers

2011-12-19T19:49:00.000-08:00

I will be getting my desktop computer back tomorrow so I will be blogging much more. I have missed a lot of events that I will have to catch up on.

I spoke to Gail on the phone. She called me after she went and got eyelash extensions which are supposed to remain dry for so many hours. I wished her well with those instructions! lol
She is handling it just the right way. Understanding that a lot of things will change and she just has to take one hurdle at a time.

I wasn't going to mention my Copd because I wants this to be about her and her needs and not me. Her sister however told her. So I think a tiny amount I could actually tell her I understood. I understood about feeling damaged and hearing such news that you automatically go to the worse place and think you are dying. She is doing good understanding there will be good days and sick days with Chemo. It is just the not knowing and not being able to plan your life.

We promised to keep in close touch and I told her I will always be here for her at any hour.

I promise to blog more soon. Thank you for your thoughts and prayers.

A call you don't want to get

2011-12-10T21:06:00.000-08:00

First I'll catch you up. (I hate this laptop, I keep deleting every line I write... grrrr)

Since my last blog and my doctors appointment I have been house bound. Well, mostly. I did make a quick trip to the pharmacy and to my daughters house. Our air quality has been in the dangerous zone for almost 2 weeks. I feel like one of those Garfield cats you see in car windows with their faces smashed on the glass looking out.

My chest is tight. For those of you without this disease my best way to describe this is to compare it to diving too deep in the water and that tightness you feel in your chest before you can get to the surface and breath in that sweet deep breath. Well.... I haven't had that breath in about a year, and then only on fortunate days.
So far my new medication isn't too bad. The only side effect that has surfaced is diahria (sp?)... which is almost fine because all the rest of my other drugs are still causing constipation. I haven't felt any improvement yet, but it's been less than a week. LOL I was pleasantly surprised that my insurance pays 100% of it.

I got a call tonight. One of those calls that as soon as you hear the voice and the first sentence, your blood runs cold and your heart just feels heavy.
One of my best friends through Jr. High and High School's sister called to tell me her little sister had just been diagnosed with stage 4 lung cancer. I can't recall dates (when I hear bad news I get selective hearing) but they opened her up to do a lobectomy (which is pretty much a lung volume reduction surgery) they were going to remove one or both upper lobes, but once they opened her up they found cancer had went into her lymphatic system, They are doing a brain scan next week to see if it has metastasized. Her course of action now is chemo, but of course they will not know how bad or how long until all tests are done.

I am not a very religious person... but please pray for her. Her name is Gail and I love her, she is 49 years old.

This makes me just want to SCREAM at cigarettes. We started smoking together, sneaking cigarettes and going "for walks" to smoke them. We were maybe 13. Because ..... YES, we knew they were supposed to be bad for us, but "nothing bad will ever happen to us".

Any way.. I am just heartbroken.

Sorry for my absence

2011-12-06T19:09:00.000-08:00

I went to my Pulmonologist today. For a couple weeks I have really struggled getting air in or out. I had already done the antibiotics and prednisone and it didn't work. He said I have been having an acute exacerbation and most likely alveoli are bursting. I am scheduled for more tests and a spirometry test in February. He put me on a new long term drug called Daliresp. It has some real nasty side effects.

He told me that from this point out there is little he can do to ease my pain and breathing issues without surgery. So... when things get bad from now on it means a hospital stay, or major pain medication at home. He told me to limit my exertion but to move about as much as possible. I think that was his way of telling me that exercise is out. I'll do what I can in my chair and with weights.

This just was quite a set back for me. Seems like when things begin to go downhill, it goes quickly.

All this and I still don't have my computer back. I am not too adept at using my laptop for blogging. I will try and do better and keep you updated on how things are going.
Don't forget about me! lol