Thursday, October 16, 2008

I’ve Turned into a Stereotype

Today I had a follow-up appointment with the regular rheumatologist. The second-opinion rheumatologist is out-of-network but I’m sensing it may be well worth the sacrifice to go back, contingent on total TNF coverage if I need it ($15,000 a year).

After a very high pain night, I had difficulty with dressing and getting ready for the appointment. I showed up at noon with no makeup, hair still wet, eyes probably bleary from lack of sleep. Between fits of pain and sleep, I had taken no notice of the weather, did not take notice until I was halfway to the office and began to fill chilled. I wore short sleeves, backless shoes and short pants, easy clothes that were close at hand and involved no decision making. And came in asking for a new prescription for a narcotic, no less.

How clear a picture of pain could I be?

But to the doctors, such a picture paints a story of drug use or of depression only, not immediate and severe pain.

The doctor, who has offered antidepressants before, tried very hard to push them on me this time. There’s not a lot he can do to help right now, but I sense him wanting to as best he can. My appearance and demeanor (honestly, not giving a shit) probably did tell the story of depression to him. To me, it was the aftermath of high pain. I had to explain that depression for me is situational and when I can get out more and when my pain is less, I am fine. I understand that antidepressants can increase serotonin and thus relieve pain, but for many reasons that’s not my chosen course. In addition, he still seems to question that level of pain for me, pointing out that the lack of changes on x-ray and MRI (common for women with spondyloarthropathy).

As I returned to the car, it occurred to me I don’t care whether I am believed. I don’t care what he thinks. I only care about proper treatments, doing what I need to do. I don’t care if he thinks I need the scooter or not. I do what I need to do, to reduce the number of mornings like this.

There was vomit in the elevator—someone had apparently not told staff members so it could be cleaned up. Few were around since I was the last patient before lunch—I had no choice but to use that elevator and then find a staff member. Why would I use wheels if I did not need them? Walking, I could have better avoided such. Walking, I can avoid so many indignities, only my stiffness getting mocked at times.

The rheumatologist stressed the need for physical therapy as helpful. As if I were not. My husband asked if I told him how much physical therapy I've done in the past year. It had not occurred to me the rheumatologist did not know--my spine doctor writes those referrals, and how that actually flares up my SI joints, as swimming does not. Regardless, I'm too tired to argue, to make my case, to defend. My pain is, and that is all.


Wheelchair Dancer said...

Docs do get their minds set about a person -- and it is hard to get them to change once they do.

Hang in.


FridaWrites said...

I decided to switch to the second opinion rheumatologist today--he called and said I have low levels of ANA, thyroid antibodies, elevated liver enzymes, etc., all of which need to continue to be tracked. And continues to affirm the sed rate goes along with my pain level.

And said he's only had one patient not covered for Enbrel in all his years of prescribing it.

I don't like making changes, but I think this one I'll be happy with. I hope for the best. It was good he called today rather than early in the week.