Finally getting off Preds

[Rose Cozzette]

ah, you are my voice of reason! i never needed drugs before and did use natural remedies and now i feel so polluted and toxic. not me anymore.

[Sangye]

I totally understand that, Rose. Before I was dx'ed I didn't even take aspirin. Three months before I was dx'ed, my lungs began hemorrhaging. We didn't know that, but just thought I had pneumonia. I was seeing only holistic physicians as always. We tried every holistic remedy but I got worse. Finally we made the HUGE decision to take one course of antibiotics. It seems hilarious now, but at the time my docs and I really struggled with that decision.

It was less than one month later that I was rushed to the ER by my new pulmy himself-- transfused with blood, started on 1,000 mg IV solumedrol in the ICU and told I would start ctx in another week. My world came crashing down. I know how it is, Rose. We have to mourn that loss like any other loss, but we can't let it stand in the way of taking care of the Wegs in the only way science knows how.

[Rose Cozzette]

i guess i am still fighting the mourning process, hadnt thought of it that way. the next step then should be acceptance but boy am i struggling with that one! i keep making future plans but its always in the back of my mind that i have limited time. silly really because there are no guarantees in life nor in death. sigh... i am definately too much alone, think tooo much.

[Sangye]

There are so many layers of loss to being dx'ed with something like Wegs. Four years into it, I'm much better at dealing with some of the losses but still struggle terribly with other aspects. Because I haven't had much progress and I can still barely do anything, I struggle with the loss of physical activity, exercise, just being able to use my body and feel alive. I feel perpetually angry about it, like a child with a broken leg who can't run around like everyone else. It's understandable.

[Rose Cozzette]

thats it in a nutshell. i remember when i was dxed and looked in the mirror, thinking that is somebody but i dont know her. dont want to know her. so i woudnt let my pic be taken and of course didnt care how i dressed. my daughter finally bought a couple skirts and tops for me and siad its time to wear real clothes so i started but didnt feel better. i never reallized how image conscious i was until then. feels so odd and not real.

[Rose Cozzette]

so how are you doing now? i still feel docs overdose us, esp women. i have stayed on 50mg of oral cytoxin as it contd to bother my stomach, still have diarrhea almost daily, and pain. look forward to getting off it and try another one. keep in touch...

[Rose Cozzette]

sp was yur trip a good one? i go next week. and have a list of questions. the cytoxin is doing a job on my stomach so look forward to trying something else. rose

[Sangye]

Rose, if you use the "Reply with Quote" it's a lot easier to tell who you're talking to.

What other drug are they considering if you're going off ctx?

[Rose Cozzette]

thats what i want to consult abt at cleveland. looks like either cellcept or rituximab right now. really dont want anything but know i have to take something. and thanks for the way to reply, i wondered what that was for. ;}

What other drug are they considering if you're going off ctx?[/QUOTE]

[Sangye]

Well, none of us wants to be on any drugs, but we wouldn't be around long if we weren't!

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