Wanting To Say Hello
I know I haven't been around much and I'm sorry for that. I don't really have a good excuse. Things have been a bit rough the last few years, but it's still not a good excuse.
I am on my third official diagnosis now, going from Limb-Girdle Muscular Dystrophy to Mitochondrial Myopathy. I'm in the middle of waiting on yet more testing to try to confirm this. Seems like I spend most of my time doing that -- waiting.
I'm still using a ventilator at night. That's going okay, but not great. I haven't confirmed it yet, but believe I'm dealing with a double-edged sword on this: diaphragm muscle weakness AND sleep apnea. If this is the case, this is very difficult because it's hard to find settings that treat both problems effectively. I'm scheduled for a third sleep study to see if we can figure all this out. It's been frustrating at best.
I've also been dealing with almost constant nausea, most likely a result of compromised stomach muscles. Great. Another problem that has no easy solution. I had a ton of stomach tests last week and see the gastroenterologist again this week. The bright side is that he seems very educated about how diseases, including mine, can impact the stomach and seems up on treatments and therapies to help.
Other than these two things, I'm hanging in there okay -- about as well as expected all things considered.
I just wanted you all to know that I AM still around -- just a bit more quiet than usual.