What do I do?

I'm feeling worse every day. Both my muscle weakness and this horrid dizziness! Today I bought some Claritin as a last ditch effort to try and "solve" it myself. I think it's part of the myopathy, but I'm not against trying everything I can first. Literally the last thing I can think of is that it's allergies and my body is just having a two year old volcanic meltdown.

That would give anyone allergies, right?

What makes the dizziness better is sleep. What makes it worse is everything. My doctor is sending me to an ENT to rule out any kind of vestibular issue. Like I said... I'm open to anything. I even called Radiology today to see if they had any cancellations and could get me in for by brain MRI sooner than 11 days. Not that 11 days is that far off, but I seriously feel like each day is a big deal.

Remember The Hunger when David Bowie's character starts aging instantly? He finds Susan Sarandon, a specialist in aging, and tries to talk to her but she leaves him out in the waiting room. A few hours later when she comes back he's aged like another 40 years. Yeah... it feels like that. 

I know how you feel David. 

Along with the dizziness my muscles are getting worse. I feel a sense of urgency I haven't felt in a while. Each time I do something I wonder "Is this the last time I'll be able to do this?" I put something away in the garage today and randomly fell down. It was pretty scary.

So "what do I do?" What do I do when each day I feel worse? When I have to wait and wait for each doctors appointment and for answers that are few and far between? My insurance declined our appeal for the full genome sequencing that might have shown some helpful mutation. Or maybe not. Now we're waiting for new insurance to re-apply. So what do I do every day?

I get up. I do what I can. I skip what I can't. I ask for help when I need it. I keep calling doctors. 

SSDI is looking like it might be in the near future. 

I miss my work. I miss my old life. Today is just a "poor me" day and that's ok too. Tomorrow will be better. I hope.