Tuesday, September 20, 2011

What did you just say?

Dr. Z: Did I give you that paperwork for Humira?

Yes. I have been thinking about what it is holding me back from pursuing that. I have a diabetic child at home whose immune system is as vulnerable as mine, maybe more so. I really don't want to take anything that is going to further compromise my immune system than I am now. I may have aches and pains but I'm functioning.  I can't risk getting really sick and then her getting really sick.

Dr. Z (with a disapproving frown): How old is your daughter?

Six.

Dr. Z:  The methotrexate may make you feel like you can function and "be fine," but the disease is still progressing. You're more likely to get sick from the disease than from the biologic medicines. You're going to want to be around when she's 13 or 14.

Hm. (Silence. Thinking, did you just tell me I have less than 10 years to live on my current course?)
Why is there no treatment that won't further compromise my immune system?

Dr. Z: That's the way it is.

Nature of the beast?

Dr. Z: Yes. You have an auto-immune disease. To stop it, the drugs must suppress the immune response. You were doing better during the study than you are now. Humira or another study is no different than what you did before. Methotrexate compromises your immune system.

(Thinking, well that sucks ass ... she is telling me I have no choice other than take the meds or die young.) I know it does. I don't want to take more. I was desperate for any treatment when I did that study.

Dr. Z: You need to think about it. Most of my patients on biologics are doing very well and aren't sick.

(Thinking, most ...)
I'll think about it.

****end of recap****

So, I'm thinking about it. I'm thinking I hate going to the doctor. I'm thinking my weight is up to the highest it's been in 14 years (pregnancies aside), and that is not helping what's left of my self-esteem. I'm thinking it's time to get serious again with the avoiding of dairy and sugar, for my self-esteem and for my disease. I'm thinking I'm going to go ahead and ask my daughter's acupuncturist next week for her input. I'm thinking my doubting of any higher power is strong as ever because she just told me if I don't take some sort of immune-suppressing injectible drug, this disease is going to kill me sooner than later. I'm thinking I am not even 40 years old. I'm thinking I have three very active children who need me right now and I can't afford to be sick, and I certainly can't afford (nor live with myself) if my uninsured, diabetic baby gets sick. I'm thinking I have to teach her NOW how to take care of herself LATER. I'm thinking of the hypocritical irony of that. I'm thinking this really makes me mad. I'm sad. I'm alone in this. I'm responsible. I hate this. Fuck you, rheumatoid arthritis.