It's a year ago on the first of July that I went to the hospital for the first time deathly ill. At first the thought was Guillian Barre' as I was paralyzed & struggled to breathe, then it was PMR, I believe, we moved onto vaculitis & then Susac's. You all know the story. Sorry to be repetitive. I've endured the prednisone treatment because of the fear of inflammation due to my high sed rate. (It's still high but much closer to normal.) But the treatment is killing me causing Cushing's. Now we are decreasing the prednisone with the hopes of discontinuing it by August (due back at Mayo Clinic then) Methotextrate has been added in hopes that as the decrease in prednisone a flare won't occur. Now I'm sleeping 16-18 hours out of every day. I'm weak. No one is talking recovery - it's maintenance now. I want more - I want to start physical therapy. I want to sleep less (my body is demanding it though) & build up my physical strength. I'm missing out on so much - have missed so much. And I'm trying to remain positive but it's getting more & more difficult. I've noticed that I'm (as most mom's are) the motivator around here. In the last few months, things have really gone downhill in my home. Dinner is not being made unless I'm awake & strong enough to cook. Laundry isn't being done unless I'm awake & can supervise it. Cleaning, in general isn't happening though I know both husband & kt know how to dust & vacuum. My home should be condemned. husband continues to work, take kt to therapist appts & visit wm. That's it. He keeps telling me that it's too much. He's stressed (& I know he is). I reply that it's no more - even less than I did when I worked & handled all the appts for both of the tweedles, the staff interviews & hiring, the cleaning & laundry (with some help), the staffings & all the phone calls. That along with his drinking, then hospitalization & rehab. And I handled it well! husband is a man & is whining! Tells me he wants to run away. Not a chance in he!!. If anyone runs, it's me. Now I can't remember to take kt for blood draws or call wm. I'm foggy & confused most days. That's why I'm not on the board much or if I'm here not replying to many threads. Too confused to contribute. I'm sorry - what brought this on was a trip to the ER the other night & an overnight stay at the hospital. There was fear of renal failure as I wasn't able to urinate. Now there's the added fear of kidney damage & diabetes along with everything else. It's being watched closely. I'm tired.......I'm normally a strong upbeat person. I feel battered this morning. My life has changed so drastically in the past year. Thanks for the shoulder - just needed to get that out of my system.