It's as if I've woken up and suddenly realized how insane my life is, how sick I really am. How did I last this long working and essentially living a normal-ish life?
My days are nearly completely consumed by taking care of myself: doing treatments, refilling medicines, ordering oxygen, going to doctor's appointments, handling insurance issues, boiling nebs, taking pills, going to pulmonary rehab. If going on disability is akin to retirement, this is not seeming very 'golden.'
The Disability Reality
Here is me on paper: an incredibly sick 35-year old woman with terrible lung function who may not have long to live without a transplant. Sobering. And quite a different picture than I normally have of myself. The lawyers tell me this means I shouldn't have any trouble at all getting approved for disability. I wish that made me happy.
Where I Am NowI am trying to come to terms with where my health is, where it is going, how much time I might have...and whether or not I want to pursue transplant. I am having a hard time picturing what life would look like after transplant. What would I want to do that I haven't already done?
Here is part of what I posted in my CF group, Older & Wiser, yesterday.
I can't shake the thought of what if I do it [transplant] and then it goes horribly wrong? And then I am dying all over again. Except that I have no idea what's going on because I only half still have CF. And I've had to go through this major fucking surgery to boot.
...When I think about what I would want to do I think of spending time with my family, especially my little nieces and nephews - OF COURSE I want to be around for them as long as possible. But they are going to lose me eventually anyway. What difference does a few years really make?
I feel like I have already done a tremendous amount with my life. I have traveled all over, I have amazing friends, I am a talented writer and I have had a relatively successful career.
There is nothing (or not much) I am eager to do that I haven't already done...although I would certainly like to spend more time doing the things I already love doing. But that will ALWAYS be the case. There will never be enough time with the people I love - ever. So I'm wondering...is this it? Am I done? Is it greedy to want more when I've already had so much?
But the truth is, I feel like I'm running out of time to make this decision. And I'm starting to get a little bit scared.
I'm Sick - Again
And no, I'm probably not in the best state of mind right now. I'm down, depressed, feeling mopey and defeated. I woke up yesterday with a headache, fever, chills, aches - got tested for the flu just to rule that out. I had been feeling sick/run-down off and on for the past few days. Last night I woke up with a pain in my left lung that kept me up off and on during the night. (When the lungs get inflamed, sometimes air can get trapped in the little air sacs and make certain positions and deep breaths uncomfortable.) Blah blah blah blah blah, right?
I am starting on IVs today - again - I made it a month and four days since last being on them. My doctor is increasingly hesitant to start IVs unless absolutely necessary because of my resistance (I now essentially have two virulent bugs that are resistant to almost everything.)
This is INSANE. This is what a person looks like on paper when they are getting to the point of needing a lung transplant. I am what a person looks like on paper when they are getting to the point of needing a transplant. Me. ME. Me??? It's not how I've pictured myself, but here I am.