Whoa has it really been that long since I last post? I don't know what's been up with me lately but I've been less inclined to write... been reading a whole heck of a lot though. Now it's your time to read, so here we go.
I'll give you another little update. I had my follow up with my pulmonologist. He says the additional testing came out fairly normal... yay. So more and more and more we have that everything breathing points to Myasthenia. Still, bad that I'm not breathing well, but good that it is attributed to one and only one thing as far as we know.
He is trying to get me in sooner with the MG specialist there to get on the same page with treatment... do I or do I not take immune suppressants that is the question. There are a lot of serious side effects/risks with them but my MG is not controlled. The other option is more plasmapheresis but with the warfarin that's a bit of a problem. Hmmm get another central line (oww) put in and undergo inpatient treatments, or take toxic meds that put me at risk of catching anything and everything out there. Neither one is a promise to work. Time will tell.
He does want me to see an endocrinologist. I saw one back in San Antonio and my levels were off, thyroid slightly enlarged with nodules but they said it was nothing to worry about. Well my pulmonologist said many of my symptoms point endocrin and he wants me to double/triple check it out. I was thinking about doing that anyways, just waiting for all the craziness from planning the surgery and then complications of surgery to cool down. So I'll have that appointment in about a month. I would love if we could just get down to the bottom of everything. Yes I have various multiple specialists to see... all for things outside of MG. Most everyone agrees there is still something lurking. The question is what if anything, can we find it, and when. I think I'll feel more confident after seeing these other specialists in having a better idea of all of those answers and providing relief one way or the other. And hey, if it's just MG, then thank you God! I certainly don't need more to add to the list.
There was a bit of bad news at my pulmonologist follow up. He looked at my chest CT scan. There is a nodule that wasn't there before. Thus he wants me to have annual scans to watch if it grows/changes. There can be multiple explanations for this. I'm just hoping it's nothing serious. And honestly, at this point, if it is serious I worry more for my family dealing with it than myself. I've become pretty darn strong at this point. But please pray it doesn't turn into anything. That of course would be best.
My pains have returned. I used to wake up at night and every morning and sometimes throughout the day with pains in my back, neck, head, joints, sometimes muscles. It went away for quite a while and I forgot about it. Well its back. I think it's because my body misses my own bed in San Antonio. That's what I'm going to tell myself, and the sooner I can return the better. I can't wait. I'm determined to get back there and carry on carry on.
What else? Well I went to a wedding! Ok not really. I was invited to a wedding and my parents went to the wedding and I just popped in to say hi and congratulations. I didn't think my body would be able to tolerate it. And I'd just want to dance dance dance and not be able to. But you know what? I'm happy with myself that I decided to stop in. The 15 minutes I was there did drain me but it was totally worth it.
Lately I think I've been a little extra hopeful/positive. I find myself thinking "could I be going into remission?!?!" or "maybe I'm ok now!" and well then my body reminds me "um no, calm yourself." So I rest and wait until I get another burst of energy to get all excited again. One day.... BUT it might not be one day at all. It is what it is and I'm not just dealing with it, I'm making the most of it. I'm living and loving and what's better than that? It's not the obstacle, it's how we overcome it.
Thank you for tuning in for Myasthenia Gravis Awareness month. But awareness doesn't end here because MG doesn't end here. Let's keep getting the word out until rare only means few people have it as opposed to no one knows what the heck it is. Thank you and Happy July!
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