|Jul 19 2012|
It may never cease to amaze me, the ups and down of MG. They can be so fast, and so different every time. Overall I have lessened the ups and downs from what felt like mountains, to, lol...mole hills. But they still affect me, like it or not.
I've done a lot in the past 2 weeks, stuff I wasn't sure I'd be able to do 6 mths ago. I was out in 100+ sweltering heat for the first weekend in July, which we all know is NOT MG friendly. But I did ok. I was tired, but not terrible. I had a cold drink in my hand constantly and my breathing was challenged but not bad. I find that if I can control how I think about my breathing issues, that I do better. I just can't worry about it. And how in the heck do ya just "not worry" about not being able to breathe?!?! Yeah, that's a tough one that involves distraction and positive thinking.
The next weekend (this last weekend) I drove my kids & I to a boat race 6 hrs away. Well, any of us that also have O-MG know how well THAT can go. But I have found that my mind has a higher tolerance for errors while in glasses than in contacts. I guess that is because in contacts, it's so much more real, and feels less "corrected". But with glasses, there's an obvious margin of error. I already can't look sideways because my Rx is so strong I pretty much have to look head on...perfect since I have double peripheral vision anyways! So my mind tends to forgive the anomalies that happen with glasses, and they don't strain my eyes as bad. So we made it fine, both ways. That made me really feel like I'd done something. And I didn't get overly worn out. Or so I thought.
While I felt good but a little tired, during the trip, this week I have been unbelievably tired, achy, and headache-prone. It could just be coincidence, but heck, with all of my ailments it's hard to believe in coincidence!!
My eyes, actually, have been bad these last 2 days. Probably did overuse them on the drive. Lots of pain deep inside (which of course NO doctor ever believes is related to MG even though it was one of my very first symptoms that showed with the double vision), and double vision is worse. They are more heavily lidded this week too. Wondering if I should use my work at home day tomorrow just so I can sleep later & wear my glasses all day as I stare at the computer. Tough call.
Cellcept continues to make me feel like an unfortunate teen. Nothing like showing up to an important business meeting with a pizza chin. EEEWWWWW! Yeah, I could do without that. My very strong regimen just keeps them slightly under control. What I do to my face would take off the face of a lesser person! :-) Oh and how the medicine-induced acne HURTS! Why does it hurt so much more than "regular" acne??? As if the reason for having to take the med isn't bad enough?!?!
I'm continuing to do my yoga and stairs. In some ways I feel stronger, and in some ways I feel like I never improve. But I can see improvements. And I have been able to open some jars again!! WOOHOO!! Yeah, takes so little sometimes to make one happy.
I start into an oncall rotation in a few weeks. I'll admit I'm a bit nervous about it, getting calls in the middle of my precious sleep. We know how important sleep is! And my eyes may not function either, so that's a concern. Then being able to function the next day. I try not to worry, though, since that does me NO good. I'll take it as it comes to me and do the best I can. Of course I am working as I type this, at 10:34 at night, from home. :-) Could be worse. I could've had to go to the office to do this!
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