Where have you been? I've been chatting away and turned around to only see me, myself and I were within earshot. (Where does the term 'earshot' come from? I'm stumped!) Yeppers, we've been chatting up a storm over the past month and quite honestly, they bore me. We've been talking...correction...I've been talking to them (to me) about this crazy Myasthenia stuff, and feeling a bit low.
I want to tell you today is day 99...and that I'm still symptom free, but I can't. Over the past 2 weeks, they've been ramping up. It started with the small leaks of airflow with my speech. I felt it once, then again the same day, and it was then I knew we were getting ready to slide. Today, I'm working hard to keep my head up..no really...I'm leaning back as I type. Once my neck tilts forward, its over. The past week hasn't been crisis level, but the body is fatigued, my speech and swallow have slowed, breathing has been labored and yes, the eyes have even crossed..and uncrossed..and crossed again. OH NO! Oh yes.
As Lee and I agreed yesterday, if we'd not been through this stuff before, it would be rather scary. The symptoms are normal for me. Now, what do we do?
If you've been reading along, you know we've been tinkering with my medications. As of today, I'm simply on steroids for the Myasthenia. Are we seeing the effects of my body being totally off the immunosuppressant? Maybe. Do we need to add that back to the 'diet' plan? Could be. Is plamapheresis still an option. Absolutely. We'll figure it out as we go, and in the mean time, just gotta keep my head up!
Sunday, July 31, 2011
Saturday, July 2, 2011
Picking Beans
I can see my cheeks..on my face..in my peripheral vision. Some days, there is more cheek to see than on others, but my cheeks are there by golly..again. I'm eating like a champ, life is good! Today is 71 days today of good days, and we keep counting.
Yes, I'm still counting, and I look back now and then to remember the last time I didn't feel good. When did I last have double vision? When was it that I last choked trying to chew food or sip water? When was it last that I needed a nap? Ok, the nap is pushing it, because I still take those. When was it that I last needed help raising my hand? (It was 71 days ago Rachel, you've already shared this?! duh) My point is that it is important to reflect and remember the struggles, to appreciate the good. Count the good days! Mom and Dad would always get after us to stop looking up the row of peas/beans we were picking, and look at how much we'd already completed. It's a good life lesson.
June was Myasthenia Gravis (MG) awareness Month, and by golly, I'm aware. We continue to decrease my immunesupressant drug, and will be done with this later in the month. We're also playing limbo with the steroid to see how low I can go, before symptoms show up. We know they work, so we'll just "tinker till we caint" (now reread that with the best twang you can). In the midst of living symptom free, I'm back to my fighting weight and have actually had to go buy bigger pants. See, I'd given up on ever fitting my clothes from 2+years ago, and gave them to Goodwill. Whoops. I am now allowed back into the women's clothing section, so I feel good.
To be fair, in any other situation, going up in size would freak this gal out. None the less, I have my bucket of beans, and I'm remembering where we've been, and I'm pretty happy to be right where
Yes, I'm still counting, and I look back now and then to remember the last time I didn't feel good. When did I last have double vision? When was it that I last choked trying to chew food or sip water? When was it last that I needed a nap? Ok, the nap is pushing it, because I still take those. When was it that I last needed help raising my hand? (It was 71 days ago Rachel, you've already shared this?! duh) My point is that it is important to reflect and remember the struggles, to appreciate the good. Count the good days! Mom and Dad would always get after us to stop looking up the row of peas/beans we were picking, and look at how much we'd already completed. It's a good life lesson.
June was Myasthenia Gravis (MG) awareness Month, and by golly, I'm aware. We continue to decrease my immunesupressant drug, and will be done with this later in the month. We're also playing limbo with the steroid to see how low I can go, before symptoms show up. We know they work, so we'll just "tinker till we caint" (now reread that with the best twang you can). In the midst of living symptom free, I'm back to my fighting weight and have actually had to go buy bigger pants. See, I'd given up on ever fitting my clothes from 2+years ago, and gave them to Goodwill. Whoops. I am now allowed back into the women's clothing section, so I feel good.
To be fair, in any other situation, going up in size would freak this gal out. None the less, I have my bucket of beans, and I'm remembering where we've been, and I'm pretty happy to be right where
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