I guess it's only week 9 of the infusions. Then it's probably okay that I am still getting used to this way of life. Pretty much every night I dream that I am running somewhere. Last night it was to Luther Burbank Elementary School. :) Then I wake up.
I want to write today to just put my feelings and insecurities outside myself.
Sometimes I am very scared. What is this disease doing to me? I wish I could see inside my lungs every day so I would know. Is it continuing to eat up my lungs? Are the IV infusions slowing down (maybe even stopping) the progress of the elastase? I go in January for more tests, so I will have to wait until then to find out the scientific answer. Until then I will continue to do what I think I can. My inability to breathe will let me know when to stop.
I have joined an online group on Daily Strength. It is a bunch of people with COPD and emphysema who talk (type) about what they're going through. We support each other and answer each other's questions and listen to each other's frustrations. It is interesting to me that people I have never met face-to-face, and probably never will meet, have become such a part of my life. The fact that I do not know the parts of their life that aren't shared online, and that they don't know mine, is part of what makes this feel like a safe place to me. We are respectful of each other. We don't talk politics or religion. It definitely helps me.
Sometimes it helps me because my questions about the disease are answered. Not the answers you can look up on COPD.com, but the answers about how it feels. The anger, the self-blame (mostly all previous smokers), the love for life, the pain of the disease. We have lost 3 members to this deteriorating disease since I joined (about 4 months ago). It is sad.
Back to why I even introduced my group. One of the members wanted to know what would happen if they just kept on going, doing what they wanted/needed to do, as in running, or vacuuming, or cleaning the garage, or hiking in the mountains, or swimming in the ocean. Would one just keel over and die right there? The real answer is, you can't breathe. You have to stop. But I liked the question. Because that is what I dream about. Running and running and never stopping.
Dee, this touches my soul, the emotions, the need, the desire, the want, are all things I go thru almost daily. Yes I blame myself, and I try real hard not to have a self pity party. But as you know and feel, sometimes you give in to it. We just try to limit those feeling. This is a beautiful post. Thank you for saying the things you did. Like you I gather strenght from our group, and like you I hope that I give comfort to those that need it in our group. I know the impact you and a few of the others have had on me, and I appreciate it beyond my words. Please take care, and continue the fight. -- Bill
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