|Jul 03 2012|
I realized it has been over 2 mths since my last post! Wow! I think that says a lot about what has been going on!
First, my new job. It is, without a doubt, amazing! I am thankful every day that I get to get up and go to it. Corny sounding, but true. I just completed a degree in this type of work as my MG symptoms were baring down on me. So to have completed that, and successfully landed a job I love, it makes me so thankful.
I work with an amazing group of guys. I have shared with 2 of them that I have MG, and again I was so thrilled by their responses. While one is a tad young and naive and doesn't totally get that I can't "will" myself through it, both have been completely accepting even asking what med I am taking if they see me take it, and what it does. And not in a noisy-in-your-business kind of way, but more of concern. Best part is that they don't treat me any different since finding out about MG. I like that. I have an autoimmune disease, that's it.
Symptom-wise has been a rollercoaster, both literally and figuratively. I discovered severely weakened neck muscles when I took my children (teens) to a theme park. The fact I dared take them as the only adult felt like a feather in my cap! But the rollercoasters proved too much for my neck and I got whiplash. I honestly never thought about my neck muscles not being strong enough to ride rides. That part saddened me a bit, but what can you do. I'll work to strengthen those muscles as much as possible but will have to seriously think before riding rides like that again.
Physically, I have admittedly been pushing. I've had a lot of motivation to drop the weight I put on after landing in the hospital with the crisis back in January. I've been doing yoga mostly, with strength training and very light cardio as I feel able. One bit of cardio has been to walk the stairs at work during my lunch hour. I started with just 2-3 flights (I have a 2 story house, so I figured that should be safe). I'm currently up to 4 flights of stairs 3 times!! They aren't perfect. I may stop at the top for a moment to rest, and I'm certainly not running! My legs muscles make freak a bit while doing them too, making me stutter-step, which is why I hold the railing! But I am very pleased that I have been able to do this. And I have lost all of the weight that I gained! I do still need to reshape the changes that occurred, but I know I'll get there.
Breathing. Breathing is still an issue. I find I look at it differently after the crisis. For better or worse, I don't fret over it so much. It's a weird feeling and I don't know if it is the same for everyone. For me, it often feels like I have holes in my lungs letting the air escape as I breathe in, or like I just can't expel all of the air when I breathe out. Either way, it is more of a constant right now, which I am attributing to air quality alerts in my area. I've still done yoga, but not pushed. That feeling doesn't improve whether I'm resting or moving, so I may as well be moving and making sure I take my meds on time & increase them as needed.
My breathing talking may scare some people, and make them think I don't take it seriously. Oh but I do. Once you've landed in the hospital for having trouble breathing, and they really do nothing but poke you all day and night, you realize you're ok. I'm not doing anything I shouldn't, and I've consulted with my neuro on all of this. Exercise, esp yoga, is at the top of his list.
What else? I should say, too, that I have been faced with some daunting situations lately, that in the past would've sent me into an anxiety attack. I have to say, knowing that stress can make MG worse, I have been so pleased with how much better I deal with things. It helps to have some supportive, caring people surrounding me. You find them in the most amazing ways sometimes.
One last note before I sign off for the night. I have to say that I truly believe none of this would've been possible without cellcept. It has changed so much for the better I think. Minus the acne, which has been really bad and discouraging, cellcept feels like it has given me a new lease on life. I only hope it will continue.
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