I'm so angry, confused & overwhelmed

[Guest guest]

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. I've

had Stills as my diagnosis since the end of January. It was a

tentative dx at first, but nothing has come up to contradict it. At

first no one said anything to me about this being a SERIOUS disease.

I was aware that it was something that would flare up frome time to

time and need to be treated, but I didn't think that I'd need

constant medications. My rheumatologist told me that I'd take

prednisone until my symptoms were under control then taper off of it.

Then at my last visit she all of a sudden wants me on mtx! This made

me so angry! All I knew about mtx was that it is a pretty powerful

drug and that I can't breasfeed while on it so I refused and told her

I wanted to talk more about it at our next visit.

So now I am actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! From

stillsdisease.org: " For example, if the patient is considering a

vacation, the dates should be marked on a calendar well in advance so

there is ample time to pack and otherwise prepare for the trip.

Patients who prepare immediately before the trip may be too fatigued

and sore to enjoy the trip, and may initiate a flare. " So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

And the side effects of all the medications seem worse than the

illness! I know that I am still on a pretty high dose of pred (30mg)

but I have not had any real joint pain in over 3 weeks and no other

symptoms (fever, rash, swelling, etc) in over a month. Why would I

want to start something else when I'm feeling fine? Just to prevent

another episode? Why can't we wait and see if the symptoms do come

back before starting something? I just don't understand! From

rxlist.com: " METHOTREXATE SHOULD BE USED ONLY IN ... PATIENTS WITH

PSORIASIS OR RHEUMATOID ARTHRITIS WITH SEVERE, RECALClTRANT,

DISABLING DISEASE WHICH IS NOT ADEQUATELY RESPONSIVE TO OTHER FORMS

OF THERAPY. " Is that what I have? Severe, disabling disease? It was

for a couple of weeks, but will it be forever?

So I don't know what to do when I see the doctor again on the 20th.

She insists that she is the expert and that I can trust that she

knows what is best. But why am I so skeptical? I don't like being a

difficult patient, but this just all feels WRONG to me. Am I just in

denial? Is my percieved health just an illusion caused by the

prednisone? Is being debilitatingly sick over the long-term

inevitable?

I just feel so lost. I'm sorry for ranting. I having to be positive

and upbeat IRL and I have no other outlet for my concerns. How did

you cope with diagnosis?