Tag: Multiple Diagnosis with CVID

An Elderly Aunt Gave Me Good Advice

Hannah Keene1 Comment

Many years ago I was with an elderly aunt whom I hadn’t seen in a very long time. She was in her 80’s then, and looked like she was still very physically active, but when I asked her how she was doing, she admitted that she had really slowed down. She had contracted polio as a child, but had never let that stop her from achieving things. But the muscles that had been retrained to take over for the muscles that had been paralyzed by polio were beginning to wear out; those muscles had been doing not only their own jobs for decades, but also the “take-over” jobs that they were not designed to do. So she was finding that she was not not as mobile as she had been, and that she needed to be really kind to her muscles.

Her solution? Each morning she did some gentle and then more serious stretching while she was still lying down in bed. Under the covers, while her muscles were still warm. She said it made a world of difference not only for her overworked muscles, but also for her arthritis. She was sharing that trick with me because I had just told her that I had been diagnosed with pretty severe fibromyalgia a few years before.

Have I practiced that particular discipline every day since then? Ummm…. not even close. Not even close to close. But now, as I’m trying to consciously work some fitness into my life, I find these under-the-covers-first-thing-before-I-get-up stretches are very helpful. It feels good to stretch my muscles again, and my body doesn’t seem to complain with this routine because: I’m not putting any weight on any of my joints as I stretch, and I’m stretching while my muscles are still luxuriously warm. This is me taking very small steps these last two weeks because I have been feeling super exhausted and run down. I can’t meet my daily exercise goals at the moment, which is why it is important to at least do what I can do, rather than doing nothing at all. This should be the mantra for all of us with serious health conditions. We should be mindful about the choices that we make, and then do what we can do. And knowing that I have done something that is good for my body makes my day better.

Balancing Medical Conditions

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It’s so frustrating! Those of us with a PID, or probably any other severe health condition, such as cancer, dialysis, MS, RA, etc, find that the balancing act within our bodies is, shall we say, extremely complicated. And that’s putting it mildly.

Example: I am prone to extreme edema, and need to balance it with diarrhetic. But then my sodium levels get dangerously low, so my doctors start to freak out. I mean, really freak out since extremely low sodium can result in seizers and death. I can’t just eat more salt, since too much of that causes my edema to get worse. And I can’t just double my water intake, since too much water dilutes my sodium levels. So I try to judge the diarrhetic dosage, depending on what my body is doing that day. High temperatures make my edema worse, so after I start to puff up, I have to take more hydrochlorothiazide for a few days. But oh, wait. I had a cold with a cough for a few days, so I took some cough medicine. Which had a decongest in it, which means it also acted as a diarrhetic. So, whoops! Too much diarrhetic. So now I’m whizzened, slightly dizzy and look like a prune.

And, well…… it never seems to end. Sometimes I feel like all my time is spent trying to balance medication, stay healthy, and get necessary rest. Most people can do that in the background of their days. Those of us with critical health issues often seem to spend most of our day trying to stay on top of those issues. Or at least it sometimes it feels that way.

Sigh. I think I’ll go walk the dog. I almost always feel better after I’ve walked the dog. And since it’s already dark, at least I won’t notice that I look like a prune.

Injections

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Today my rheumatologist gave me my monthly lydocaine injections in my neck, shoulders and upper back. These are injections to help control my fibromyalgia pain. Sigh. So many medical diagnosis all jumbled together in one body, as is the case for so many of us with primary immune deficiencies. There are some weeks where almost the entire week is filled with medical appointments. At any rate, I am blissfully numb, but also woozy and am having difficulty typing. (And yes, I have to rely on friends to drive me to these appointments, as I would be dangerous on the road.) I’m also exhausted from redoing the site over the weekend. So I think I’m going to do what I would strongly suggest to any other person, but have trouble giving myself permission to do myself: take the rest of the day off. As in not pressure myself to do any chores, tidying, etc. Not even work on additional improvements to the site, which is hard, because I’m itching to do them. I’m too woozy to even read, which is disappointing, but there you go. Do I see a nap in my near future? This, guys, is me trying to do a better job of taking care of myself. I have to give myself a pep talk to do it.