**I'm wordy. Get used to it.**
Simple words, very cliché, yet, disgustingly true. We all tend to take advantage of the little things around us, ignoring just how important those things are. It isn’t until something or someone takes them from us that we even realize we should care.
This is a bit of a maudlin post. Yet, at the same time, it is a bit celebratory. Let me begin with the celebratory part.
After nearly a year of having blood drawn every single month, testing this, that, and another thing, I have at long last gotten good news more than once. Trial and error to get the right combination of medications have finally led to having my levels all come back close enough to normal that I get to wait 6 months before I see the endocrinologist again. Yes, I have to take 12 pills a day to keep them stable, but I’m stable. And, that, my dear readers, is what matters.
This is where the maudlin bit comes in. My dear friend K has spent the last year nursing me through my ‘self-pity’ days quite well. A few of those opened with emails from me to her stating, “Yes, I’m feeling sorry for myself. Just let me wallow. I don’t want to hear it.” And, she did just that.
See, I cycle emotionally, especially in dealing with such a screwed up disorder that messes with the levels of all sorts of important stuff in your body. For the most part, my days pass just fine. I’ve learned to recognize when I’m in danger of over-exerting myself so that I can slow down or stop and rest. Yet, every once in a while, even though I’ve taken my meds, and I’ve been cautious not to over-exert, my levels will still drop, and I will suddenly find myself unable to hold my own weight on my legs. This has only happened once since we got the right medication combination, but when it does, it is very difficult not to feel overwhelmed and betrayed by my body.
However, it has now been nearly a full month since that last episode, and that occurred on a high-stress day, so I am not surprised. The longer I’m on the meds, the longer spans of time between ‘down’ days.
And that, dear readers, is another reason to cheer. I might even be able to rejoin the choir in the fall. I would like that. I miss it.
How does all of this tie in? Think about it for a moment. Imagine you are a very active participant in life. Hiking, camping, biking, gardening, playing with the kids, just simply never sitting still. All of a sudden, you’re standing there, watching the amazing Michigan sunset when your knees start to tremble. Before you can even realize it, the tremble has become a seizure-like shake. Then, all strength is wiped from your legs, knocking you to the ground. Your legs just won’t work hold you up anymore, no matter how many times you try to stand or walk. You might be able to manage a crawl, except that your arms have started to tremble, too, and you’re now afraid that you’ll literally fall on your face if you try.
That is when you realize just how precious the act of walking, or even just standing without help, really is.
I thank my PCP (Primary Care Physician) all the time that she was able to actually recognize the disorder and order the right blood work, and more so when the blood work came back, since very few PCP’s, or any doctor outside of Endocrinologists, have any sort of clue about this ‘thing’. I also thank her that she sent me to this particular endo. While his name may be different, I view it that I am being treated by ‘Dr. House’. Other clinic workers see his name and cringe, while at the same time, my PCP flat out said that if she were faced with this, this particular endo is who she would want.
That faith has proven well-earned, and I was even able to help with the landscaping over the last 2 weeks, with only losing strength for a couple of hours, rather than the whole weekend, and that was only after 2 hours of seriously manual labor moving heavy rocks around.
I may have to deal with a counter full of medicine bottles for the rest of my life, but it’s worth it if it keeps my muscles cooperating. I know I’d survive if I did lose my mobility. After all, there are worse things that could happen.
But, I know what I’ve got, and I want to keep it.
It's All in the Details
9 months ago