[Ravenred]

Morning all

First off - thank you ping, suev, stellatum, jana, ginne, Abby.... and everyone else I haven't mentioned - between answers to my own questions and reading your posts you guys have helped me understand what is going on on the MG front..... So I'm not going to hesitate to ask whats on my mind at this point...

I'm now 10 days out from the thymectomy and finally home - after I ended up going into crisis, getting slammed with 5 straight days of plasmapheresis, central lines, steroids and enough pain meds that made me hallucinate a very interesting conversation with two sumo wrestlers who stepped out of the paint swirls on the walls to discuss the merits of wrestling in pumpkin pie versus lemon meringe or italian ice.... but during all of it I managed to keep my act together (even the hallucinations ), cooperate the best I could with the nurses, docs, .... and concentrate on getting well enough to get home to my family.

BUT: now that I am home, I find myself falling apart emotionally / mentally.... whether it means hiding in my room or the bathroom so no one knows I'm crying - and it isn't solely from pain. Or that I keep waking up terrified that I'm going to find myself unable to move / talk / breathe again (I did not have the luxury of passing out / being knocked out when every muscle in my body decided to stop working at once...). OR that I find myself cringing when anyone comes to visit and wants to know how I am doing- 'cause while I know I am physically healing from the surgery itself, I have never in my life felt this weak or vulnerable... and to top it off: me, Ms Always Independent - I am actually physically and mentally relieved when one of my grown kids has found an excuse to stay home with me even though it is everything from inconvenient for them to an invasion of privacy for me..... Or the stupid things I find myself doing now: staring for hours on end at the same DVD playing over and over again- me a person who prefers to listen to TV for over 15 years yet never sat and watched it cause I've had too much else of interest to do... a pile of books waiting to be read - finally time to catch up - but I can't seem to bring myself to open any of them.... Lists of letters and emails to write - all sitting.... Friends I had intended to call and talk with that I never had enough time to just sit and chat with before all this began unless they were ill.... not a call made......My grandson bless his heart even tried bringing out my favorite toys to play with him (not his favorite which of course are guns, bows and arrows and his super hero cape... But my favorites - playdoh and our board games...) and it was all I could do to muster a smile for him let alone play.....

What on earth is wrong with me? The person I use to be / know myself to be has disappeared / gotten lost somewhere in a mind numbing zombie blank eyed fog.... And while I would like to blame it on all these new meds that I've never had to take before, I'm not sure that it is - especially all the emotional ups and downs that go from out and out apathy to downright terror/panic attack in a matter of minutes! (Another "first" for me today - daughter and I went for a quick round to the store just to walk / pick up coffee and I was in an absolute panic to get back home after about 10 minutes.....)

I don't know - what do you think considering this is what I am on right now:- pred is down to 20mg/day, Mestinon q4-6hr (been on that one for several months now...), Tramadol q8 as needed, fentyl patch (1 patch good for 3 days..)... and if I understand it right, I'll be starting yet another round of plasmapheresis by the first of the month..... Is it the drugs or am I losing my mind? Is this just part of dealing with MG I haven't encountered yet?