Wednesday, April 27, 2011

Someone else's eyes

I never like to visit my doctor, not that there is anything wrong with him. As a doctor I couldn't ask for better, as a person I think he is a good human being. But I don't like to see him because I don't like to see the truth. It is always through his eyes that I see how I am doing. Today was not a good visit.

I saw the good Doc today in preparation for the sinus surgery that I thought I avoided but as a good patient trying my best to give a transplant the best outcome I said I would do the surgery, as per the Pulmonologists request. So on May 26th I will have a drill put in my nose and beyond there I really don't want to know the truth. Sometimes an ostrich is a good thing, other times it is not.

As my weight continues to be an issue, which until today I thought I was doing okay but apparently I am not. Through his eyes I see that I am carrying about 5 pounds of water retention because the effect my lungs are having on my heart and my heart has to work harder to make the lungs and the rest of my body happy. Problem is I need more fat, what I thought was fat is not. I honestly don't like looking at myself in the mirror anymore, because I can see what I have lost especially in my upper body and my arms, but I have refused to do anything about it, to really push to get it back. Why? Well because I am tired and I am still trying to work and I am still trying to live a "normal" life. I continue to try to survive on my 3 square meals a day and frankly it isn't working. Eating my big supper makes me feel awful and effects oddly enough every part of my day. See if I eat at 5:30 a big meal than my food sits there and I have to wait until 9 to do my vest which takes an hour, then it takes me almost 30-40 minutes to get into bed after rinsing nebs and normal get to bed things, sometimes I eat, when I don't it goes a lot faster. But if I don't get to bed until after 1030 then it makes getting up harder and if I can't get up until 7 then the whole day is off once again. I don't know why I can't fix this mess, I am frustrated that I can't seem to find away out of this mess but yet is it that I can't or that I am refusing to change?

I don't come from a family of grazers, I don't know how to eat 8 times a day. I don't know how to eat Camembert (that would be fancy cheese with incorrect spelling) on crackers. I don't know how to eat like that, I don't know how to find the energy to exercise beyond my 30 minute treadmill, I don't know how to get muscle back and I need to do all these things. Through the docs eyes all these things need to be fixed to help me have a more successful transplant. I just don't know how to get there. I feel scattered and disjointed everyday. Some days this fight is so hard and then days like today when the reality of what I know but chose to ignore hits me in the face, I crumble.

I have a long road ahead of me, I have the a difficult blood type for transplant, I have antigens, I lack some antibodies. This could be a long wait and I have to try to tie the knot at the end of my rope and hold on. I just hope I can keep holding until that call comes. I don't like to feel this sad or this unsure, but when I see myself trough the good doc's eyes I can't ignore the truth. I just can't let him win with the feeding tube discussion, I have had to do so many difficult things already, I am not ready for that one. Just give me one thing I can do on my own dear God, give me my love of food back and help me find ways to get fat back and find some answers..

Whipping cream, here I come.

1 comment:

  1. I see if there is any Camembert when I go to pick up the whipping cream. Hang in there-- if there is one thing we do well in this country, it's help people get fat. Just read "Eat this, not that" and do the opposite!

    Call if you need to talk. Love you.