Several people have asked me to describe what has happened/is happening to me. My initial symptoms were a bit different from what I've had in the last couple of months. I think the treatments I got early on changed things. Maybe they helped in ways I didn't fully appreciate because I was still having issues?
Some days I'm the Scarecrow.... It feels like there's nothing but straw up there. I'm scattered and distracted*. I can't fully understand words (especially written words). Well...it takes me A LOT more effort to understand. I might have to read a simple FaceBook post 5 times to get what it's saying. I have a VERY hard time thinking and an even harder time expressing thought. It's not really that I don't know how to say what I'm thinking...it's that words just aren't there. Sometimes it's that I have a word that I just can't come up with. (I want to say "I'm going to open the door" but "I'm going to open the fruitcake...the franderbobber...the nutshell..." is what comes to mind (or comes out of my mouth).
There are times when I'm either overly emotional** or have a lack of emotion or inappropriate/incongruent emotions.
Up until recently I had a headache EVERY SINGLE DAY. It wasn't all the time, and it wasn't completely debilitating. It wasn't like that early on. I know that because the first neurologist I went to was a headache only doctor. I remember telling her I wasn't having headaches. I don't exactly know when they started, but at some point I started paying attention and saw that I was having them every day. I realized yesterday I have not had a headache for several days!!! Sometimes you don't notice when something familiar is missing until it's been gone a little while. Now I did wake up with a headache this morning, but it didn't last.
I'm VERY weak and have no endurance. I get tired quickly. However, I was having to nap quite a bit and I don't think I've had a nap all week long!!! I'm certainly not able to run but I have been able to walk/run and I have taught Spin class the last two Mondays.
I have gained about 15 pounds. That could be from the steroids, but I think the biggest reason was how I was eating the whole month of June!! However, that could be a slight side effect from the steroids. I don't fully understand it but one way steroid use impacts the body is that it prevents glucose from entering cells. You end up with higher blood sugar, but the cells aren't getting their preferred energy source. This can lead to an increased craving for sweets/carbs. ((Anyone in the medical field who is reading can feel free to set any errors straight...I don't have a grasp on it and it's not something I've spent ANY time trying to understand!!)) Combine these cravings with added stress of my grandfather's illness and the sudden loss of my grandmother...combined with the stress of illness in general...combined with all the traveling I've done in the last two months...on TOP of NOT working out several hours a week?? It's a wonder I've ONLY gained 15!!
I do think the steroids are working (to lessen inflammation and to suppress the attack of the antibodies), but they aren't working as fast (or as completely) as I had hoped they would. In the past I've said "I can't always control my circumstances but I can control what thoughts I allow in my head." I'm finding that's not always the case. Some days I have an incessant replay of one tiny song snippet (for days at a time, NONSTOP, even in my dreams), some days it's COMPLETELY blank up there and I can't produce thoughts, much less words, without tremendous effort. But, as I've been writing this, I've realized that it IS getting better each week.
I am FIVE weeks into a 48 week treatment plan. To be able to say I'm getting better is REALLY GOOD. To say I'm not 100% stands to reason. I shouldn't be 100%...
I'm not the scarecrow...I'm a butterfly...well, not quite. I'm still in the process....
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| I think I'm the pupa, but maybe my colors are starting to show a little bit! |
Thanks for stopping in and sticking around!!
* to be clear...I'm ALWAYS a bit scattered and distracted, but this has been taken to an entirely new level! **to be clear...I've ALWAYS been "overly emotional" but they usually are just "fully felt" not wildly unrelated to what's going on around me!! :D
