update saga

[Guest guest]

Hi all,

Wanted to give a quick update. Saw rheumy on

Monday which is always a good appt whenever I see him. He has doubled the Lasix to 40 mg. 2x daily to see if

that will help with the fluid buildup in my chest/lungs. He told me to go ahead

and go back on the Cellcept and Methotrexate.

He wants me back in a month.

BTW – he told me NOT to go off on my pcp L said he was a

good guy and is just having a hard time. (whatever)

Saw pcp Tuesday and started to go

off on him, telling him he NEEDS to work with rheumy better bla

bla bla – I said to

him I know I am a frustrating case and all but if you don’t think you can

help me well then it’s time I find someone who can. We talked and he

hugged me and said he did not want to see me go elsewhere and that he has a lot

of patients but at times he gets frustrated because it seems like all the

treatments he gives me at times don’t seem to work and that frustrates

him because he doesn’t want me this sick that he tries and tries to

figure out what to do next and that he really wants me to stay and continue

working with him. I said ok and he said you know you can call me anytime.

Voice is almost completely gone – so I called and made

an appointment with the ear, nose, and throat dr for

tomorrow. I am afraid that this is going to damage my vocal cords and I want my

voice back.

Still in a lot of pain body wise. Going up on the roof last

weekend to help Mike really did me

in. Every bone in my body aches more than they normally do, but hey as the rheumy

says Im just flaring as usual, he got mad at me for

being up on the roof and in the sun for over 10 hrs but understands that Mike needed someone

to help and I was the only one available. He just told me to take it easy so

that is what I am doing.

Well I need to go, gotta go lay

down my body hurts sitting here.

Hope all are doing well and please have a pain free day and

upcoming weekend.

Love to you all…

Hugs,

Deanna

LUPUS Serenity

Prayer...

Lord, grant me the serenity to accept the things I cannot

change, the courage to change the things I can, and the wisdom to hide the

bodies of doctors I shot when they said, You're perfectly healthy, it's all in

your head "

[Guest guest]

Wow Deanna, you have a pcp that actually cares wether you stay or go???? AND A GOOD REUMY?? Seriously though, I am glad to hear that he is so concerned for you and your health, that sure makes life a little better to know they care doesn't it? Are you feeling any better yet? I know it has been a bad summer for you health wise, hang in there,

a