Rituximab Round Two

[renidrag]

Day 31 off prednisone and still have to nap in the pm. Worse part is I fall asleep around eight in the evening
and sleep through the night. I am hoping Cytoxin has something to do with it as I hope to be off that by April and
probably put on Imuram. I hope. Got to go now, zzzzzzzzzzzzzzzzzzzzzzzzzz.
Dale

[moyan]

Hi. I actually think it is WG affecting my bladder so I have to get up every 2nd hour. So now I have 2 excuses, preds and cats!

[Sangye]

Lightwarrior, I was like you on the high doses-- far too weak to act on the pred energy. It was only evident in my mind, which raced endlessly. I'm not much better at this point. The big hit of pred each week doesn't translate into physical energy at all. In a way I'm glad, because I know it would be spending energy I don't have.

[Doug]

Dee- That was my experience, too. It's terrible we have to experience WG, but it is great we can help others down the line. It would be great if each of us could be a Cindy Abbott, but, in truth, each of us has the potentional to help hundreds, thousands of others by sharing our experiences with people on this forum or other ways we may not even realize.

Each of three hospitals - general, regional, then a university teaching hospital- had staff who'd never heard of WG till I came through. Because I came through, dozens of medical care professionals had a chance to ask questions, check the internet for information (and new questions!), see the effects of the disease when they came in a nearly dead package, and better prepare themselves to better serve those in need. You might be surprised how many people learned from contact with you- or people who had contact with you! The university hospital put the details of my case on the internet, so thousands of medical care professionals were able to follow my progress each day.

I don't think this is unique to just my case.

[Doug]

Elephant, one doc wanted me to test for sleep apnea. Disaster: The cats saw the cord and said yahoo! new toy, so I put it on the floor and covered it. Next thing it was disconnected at 11 so now I have stopped evening waterdrinking

LOL ~ new toy indeed! Cats!

[DEE]

sangye hubby and i said if only one of the three students remember our conversation its a forward move i meet someone i had not seen for a while today and she said remind me again whats wrong with you !!!!!! when i told her she said its like cancer then !!!!!! i explianed the best i can but sometimes get tired of trying the repiy
well your looking well
i want to say yes its just taken me three hours to get myself out of bed
sort meds out
have breakfast
then struggle to get clothes and shoes on
and when i got back had to rest
i only went for short walk across roadd to get the paper !!!!!!!!!!! ot feeling sorry for myself its just hard when people dont understand
i might look fine but on the inside screaming does it get easier to cope with?
anyway enogh about me how are u doing today ? DEEx

[DEE]

oops preds effect sorry about miss spelt words
and the lack of putting what i mean
by easier to cope with i mean explianing to other people DEEx

[Sangye]

It's gotten a little bit easier to cope with it, but not much. Many people who see me often either have only known me with Wegs or have become accustomed to me being like this. They've forgotten how I was before but I haven't. That "me" is still inside this body, is still completely shocked to see what I look like, what I can't do, and is still trying to get out. I scream on the inside a lot, too. They don't understand what this is like, and they sure as heck don't understand how good they've got it.

Therapy helps. It's taught me how to honor what I'm going through whether or not anyone else does.

[Doug]

Dee Fine! Though, erm, I had to put on my shoes in steps, the walk over to the care center (1/2 block) to visit my mother nearly left me breathless, and... That was my morning. Lots of huffing and puffing, aches and pains, but nothing I couldn't handle. Don't worry about it. You are experiencing a typical weggie day, I fear! It is hard to "help" others see just how serious our disease is when we ourselves oftentimes look "normal", especially when we are in remission.

[DEE]

thanks doug and sangye yep a weggie day indeed tried to get BARON to take me out for morning he said 7.30 am he said wait and see when in fact only managed the paper walk and sit and watch the rugby the rest the day maybe tomorrow !!! night to u both DEEx