Rituximab Round Two

[elephant]

Dee, glad you are listening to your body. You have yourself a nice night.

[Lightwarrior]

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.

Well put Sangye, very articulate. Certainly describes almost where I am at right now. People who know me still expect me to be the "normal" old me. The guy in the coffee shop at work still has intructions to call the unit if I buy coffee, they don't understand that caffeine won't make me zoom around, they are safe (lol). I am shocked to see what I look like, I work with supportive people who tell me this will pass and I'll be back to "normal" soon.

I never wanted to be the person who talked about everything that was wrong with them. Most of the time, I say I am doing great. I am so tired of not doing "great".

[Sangye]

I go for the 3rd rtx infusion on Tuesday. After doing little more than sitting in my basement for the past few days, I felt like I was doing better. Today I went to our temple for a few hours and discovered that I'm in worse shape than I thought. Just walking the 50 ft to my friend's car (no way I could drive myself) was enough to make my legs quiver. Even just praying for 2 hrs was exhausting. I can't believe I have 2 more infusions to go-- I'm only half-way done???

I feel discouraged. My new normal keeps getting worse, not better. It's been many weeks since I went to the pool. Just taking a shower is enough to make me start trembling. This sucks.

[DEE]

lightwarrior my saying is "im fine" just had jeans crisis this morning with added preds etc they just dont fit thank goodnesss for legging and jogging bottoms :-
and just to add to it my friends the hot sweats are back or as i some times call them " power surgess "
hubby made me laugh said to think hat the jeans had srunk not that i got bigger !
sangye how things going today ?
elephant body says STOP today DEEx

[DEE]

sangye ditto since increased cyclo and double preds = useless went to carboot sale this morn walked very little = three hours sleep also = when woke u nice surprise a visit from my son who at uniiversity because its mothers day
hubby cooked lunch then visit from daughter too helpt to remind me why i have to keep trying to move forward
i wishing u all the best thinking of u DEE x

[elephant]

Sangye, it is not fair you are going through this. Praying and thinking about you.

[Lightwarrior]

I feel discouraged. My new normal keeps getting worse, not better. It's been many weeks since I went to the pool. Just taking a shower is enough to make me start trembling. This sucks.

I'm sending you light and warmth. I'm sorry it sucks, the light you send out helps the rest of us weather our sucky times. I hope you can feel our strength to help you now.

[JanW]

I'm sorry the rtx has laid you low, Sangye. Wishing you peace and strength.

[DEE]

still thinking about you wishing u all the best tuesday DEEx

[Sangye]

Thanks, everyone. I'm steeling myself for tomorrow....

I also just got a pedal exerciser-- like bike pedals without a bike. You can use it for pedaling with your legs or put it on a table and use it for your arms. I'm hoping it will help with circulation and maybe burn some calories. I can't really do any exertion, but the fluid accumulation in my legs might be lessened by contracting the calf muscles a little bit. They're very inexpensive--around $25-- and you can get them at places like Walmart or some drug stores.