$260+ Prescription and Epic Failure So Far

Maybe.  Maybe not.  Has it been enough days?  How long will it take?  WTH?  Without actually going into the failure of a very expensive medication, and without talking too much about the why's and wherefores of it all, I still have to get a few things off my chest with regards to where I am right now, today, tomorrow, and the rest of my life.

Let me start by asking the burning question: "What life?"  Yes, I'm breathing.  Yes, my heart still beats.  But there isn't any quality of life at the moment.  Now how is it that I'm supposed to do anything other than 'will' myself through each and every day when there LITERALLY is NO quality of life?  How do other people do this?  Oh, and I've looked, trust me.

I see videos, read blogs and articles and forum posts, and I just can't really connect with what they're saying, what they're talking about.  I don't understand what the hell is happening to me right now with all of this muscle weakness and shaking, which at times feels like I can't stand or walk.  Where is this coming from?  Medication?  I see no one really talking about this anywhere, and what weakness etc they may feel isn't enough to shut them completely down like this.  And I see people who are still able to get through their day and take care of common tasks, ones that are now nearly impossible for me.

What gives?

I keep looking, keep reading, keep learning, keep hoping and believing this will eventually get better. But there's one little problem with that method of 'coping,' and that's this: I have no real grasp on what "this" is!  How can you look for a solution, remedy, or cure for something that is yet unidentified?  You can't.

Yes, I know and understand I have AIH.  I get that. I'm on medication for this AI issue and hope remission will be quick.  I realize it generally takes 1.5 to 2 years for remission to be in place, so I'm prepared for that.  But these symptoms... wth?

My first week on prednisone was AWESOME, and I may have overdone things a bit, I admit.  Maybe the 8+ hours a day I spent that first week of feeling really great triggered something with the muscles?  I had chilled out the following week after the first taper because of the return of symptoms.  And yet while my dr increased the dosage again for a short while... it didn't help.  Did I trigger Myositis to flare up?  Is Myositis the other problem?  Doc seems to think so.  Damn.

OMG, seriously... I can't stop thinking or talking about this.  See, this is why people need a diagnosis of SOME kind, because GUESSING or WONDERING wth is going on can drive a person nuts, especially when it's gone on too long.

Geez.... Shut up brain! :/