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.
Sunday, November 11, 2012
Thursday, November 1, 2012
Infusion #7
Well, we're definitely learning as we go. It doesn't seem like the IVs are a great big huge deal anymore, but they're still a big deal.
We bought a set of plastic drawers to keep all our medical supplies in. Bob is so organized. He labeled the fronts of them with the stuff that's in each drawer. It makes it easier to know when we're running out of stuff and how much more to order. A very good idea. A very smart husband.
Sometimes Bob finds that vein the 1st time, and that is really nice. This week it took about 8 tries. Ouchy. We bought Mickey Mouse bandaids so it wouldn't hurt so much. They really work!
Haha, remember I was going to keep track of how I feel and stuff after my antitrypsin infusions? Well, that isn't happening. I made a chart and filled it in for 2 days in a row. That was about 2 weeks ago. I just don't like doing that. I'm not a charter. Even when I was getting paid to chart stuff, ugh, I hated it.
I do think the antitrypsin is helping me. It seems like Mondays through Thursdays are higher energy days. See, this is why I need to chart. Then I would know. We do the infusions on Saturdays. Sundays are football days, so they don't really count. Unless I get super excited about one of the games, Sundays are not high energy days. Monday, Tuesday, Wednesday, Thursday usually are good days. Sometimes I even climb on my treadmill and go for a while. That helps. By Friday I am getting tired. I don't know if it's psychological or physical. I'm going with physical.
We'll keep this going. I'm glad that my husband is the one that puts the IV in me. I totally love that man.
We bought a set of plastic drawers to keep all our medical supplies in. Bob is so organized. He labeled the fronts of them with the stuff that's in each drawer. It makes it easier to know when we're running out of stuff and how much more to order. A very good idea. A very smart husband.
Sometimes Bob finds that vein the 1st time, and that is really nice. This week it took about 8 tries. Ouchy. We bought Mickey Mouse bandaids so it wouldn't hurt so much. They really work!
Haha, remember I was going to keep track of how I feel and stuff after my antitrypsin infusions? Well, that isn't happening. I made a chart and filled it in for 2 days in a row. That was about 2 weeks ago. I just don't like doing that. I'm not a charter. Even when I was getting paid to chart stuff, ugh, I hated it.
I do think the antitrypsin is helping me. It seems like Mondays through Thursdays are higher energy days. See, this is why I need to chart. Then I would know. We do the infusions on Saturdays. Sundays are football days, so they don't really count. Unless I get super excited about one of the games, Sundays are not high energy days. Monday, Tuesday, Wednesday, Thursday usually are good days. Sometimes I even climb on my treadmill and go for a while. That helps. By Friday I am getting tired. I don't know if it's psychological or physical. I'm going with physical.
We'll keep this going. I'm glad that my husband is the one that puts the IV in me. I totally love that man.
Infusion #6
This week the IV of antitrypsin went well. It was Bob and I. It was pretty quiet and it took about an hour and a half to get everything set up and drip the medicine into me. Drip, drip, drip.
Feeling better. Breathing better. I guess the antitrypsin is working. I still can't get too carried away. But losing my breath is one way to know that it's time to stop, since that's all I am capable of doing. Stop, breathe. Okay, move again, just not so fast this time.
This breathing better is helping me to feel happier.
Feeling better. Breathing better. I guess the antitrypsin is working. I still can't get too carried away. But losing my breath is one way to know that it's time to stop, since that's all I am capable of doing. Stop, breathe. Okay, move again, just not so fast this time.
This breathing better is helping me to feel happier.
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