update and cellcept

[Guest guest]

Deanna, You are in my prayers, too, honey. Love you, MM

[Guest guest]

Hi all,

I wanted to Welcome all the new members, say Happy Birthday

to those I missed, and wish those that had Anniversaries a Happy Anniversary.

I have not been around much lately due to my health. It

seems it has just gotten worse so for me to be online much is not an easy feat

in itself. I still can not lay down without losing

breath, and I have gone for all the heart testing and I pass those with flying

colors. Every test they have run me through comes back fine,

I even had a bronchoscopy last Wednesday with a biopsy that came back normal. Everyone

is just chalking this up to put the blame on Lupus!!! I feel they are all just

idiots and don’t want to take the actual time to investigate so they take

the easy route and put the blame on the lupus and send me back to the rheumy.

Thank God, I have an awesome rheumy who doesn’t mind taking the time to

research, investigate, etc. He just wishes that the other doctors would

communicate with him as to “WHY” they feel it is the lupus. He is

as fed up with my other doctors as I am and says I am much to polite to these

other doctors J ( I just say screw them to him ) he says he would be much

more nastier J

I saw the rheumy today and the new course of action which I

knew was coming was to put me on Cellcept. So I just took my first pill about

10 mins ago. One of the side effects is lymphoma – but at this point I

don’t care if I get cancer because at least doctors out there know how to

treat it – All my doctors know I don’t care if I get diagnosed with

cancer as they all know what I have been through and in my opinion cancer seems

easier to treat than this damn lupus. Several family members have died of

cancer, and are still going through cancer so I know what to expect if I do

indeed come down with it. It is sad to say but at this point what else can I

say or do.

If this Cellcept does not help (which we are hoping it will)

this was the last medicine that we can try before I end up having to go through

chemo and all that. So in a way I guess I am prepared for a cancer dx if it

comes to it.

Several of my docs wanted to up my depression med because

they say I am too depressed – but HELLO wouldn’t they be this way

too if none of their doctors were willing to investigate and research what is

really going on? My rheumy says I don’t need to up my dose that I am

actually taking all this reasonably well, even he

doesn’t know how I cope. Lol

My rheumy also gave me a new script for a new muscle relaxer

to see if it will help my pain since I have to try to sleep sitting upright and

omg I ache all over. Both the rheumy and I agree that since being taken off the

methotrexate all my symptoms turned for the worse – the downfall is that

I can not go back on it due to my thrombocytopenia and my blood doc says if I

continue on it I could have another stroke and the next stroke could be my

last. I look back now and really realize just how much of a wonder drug

methotrexate truly was for me and keeping my lupus controlled.

Well, I am going to go lay down, I wish you all well and

know that your all in my thoughts and prayers always.

Take care…

Hugs,

Deanna