I had hoped to start writing out here, to first, provide a single location to update my family and friends on my condition, rather than hound everyone via email so steadily. Secondly, my goal was to eventually provide others with MG, an additional point of reference in their discovery of the disease. Today, I'm working from home, after my treatment this morning. I got a little bit sick.
I was very excited to get to pheresis today, because I'd gone a week without one. I was trying to be a superhero and prove that I could. Mistake. The week prior, and since my last post I believe, we had a week long sales meeting that included many early mornings and late nights. That week, I also only took one treatment that week, and mainly because I was doing so well from treatment to treatment. Well, why do things the right way, when I can make them difficult? Rather than continue the 'good weeks' for a while, I decided timing was good to try for a 1-treatment week. Follow me?
The long story short, I should have rested and taken additional treatments. This last week has been tough, in that my speech was practically gone, my swallow was becoming labored, and to top it off, the double vision sat down to stay a while. Ug! So yes, I was excited for treatment today. I woke up this morning to find my heart racing, and my head a bit dizzy. I contributed this to the conclusion of another 1-week double vision cycle. I'm always a bit woozy on the last day, while things are bouncing between single and double vision. After they hooked me up to the machine today, which by the way was ready to go when I arrived at 8:30, my blood pressure started acting stupid! Technically, the pressure was fine, but my heart rate was insanely high. We checked it again, and it marked high again. I felt fine...and then I didn't.
WHAM! Like hot flash I suppose, because I considered stripping right there, my body ran hot, I broke into a sweat, my color went white(r), and the nurse and I pushed the chair into recline mode pronto. Faint and ready to run, I laid still with my sleeves pushed high, the sweat pearling on my lip, my knees held close to my chest, and then it passed. If that is anything like a menopausal hot flash...it ain't for me!
They pumped so many fluids to me, that I said I really needed to hit the restroom quickly. For fear of my falling down, the nurse walked with me down the hall. Good thing, because I'm sure I would have taken a digger or crawled into an open hospital room for a nap, had I been alone. After my water break, I returned to the chair, reconnected, watched the hear rate stabilize and then the BP started to sink a bit. Oh yay. When the BP drops, I know that anything I've eaten, will soon be exiting the wrong way quickly. Lee met me in the lab to help me down to the car, and took me back to his place to rest, while he works. Dang the BP drop...but thank God for Cola and saltine crackers. I'm sitting up and venting now.
The Good, I made it to treatment today, and will go again on Wednesday. Hopefully, my swallow and speech will return by then, and I can continue eating like I want to. The Bad, that MG is a crazy, stupid disease, and really ticks me off...and I know its ok to say that.
Time to nap again. ;)
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Smile because you can!
Life is such an amazing adventure! One day you're cruising along with certain expectations, a planned route, and plenty of gas in the tank. The next, you're not sure where you are on the map and your compass fell beind that comfy seat you were in.
Smile because you can!
About Me
- Rachel
- Austin, TX
- My name is Rachel, and I have a neuromuscular disease called Myasthenia Gravis. This crazy condition was bestowed upon me in late 2008, and has the ability to render your body weak and sometimes useless unless proper treatments are administered. I've learned so much, and I feel blessed I am able to share. I'm nervous to write, but have learned that I should. Maybe you'll take something away from my nonsense.