I have an elevated ESR (sed) rate and negative rheumatoid factor, which continues to confirm I have spondylitis or I don't have spondylitis. Now the rheumatologist is backing out on the spondylitis diagnosis and suggesting maybe I just have osteoarthritis, even though my sed rate is much higher than it was. I'm confused and frankly, depressed. I don't think seeing doctors is good for me.
No Remicade for me, no Enbrel for me despite pain level. The new NSAID is working and helping some, thank goodness. I realized I actually do have a lot of morning stiffness now that I don't have much morning stiffness. I don't know that the rheumatologist believes me. I don't need him to believe me. I just want him to treat me appropriately. Whichever the diagnosis, the treatment is the same. I don’t expect that any doctor would take everything I say as absolute—that wouldn’t be objective science; I also question what they say—it’s only fair since when I see someone we both bring our biases to the table. What I would like to see is a physician who can entertain the idea that I might be right as much as the idea that I might be wrong (about pain level, etc.).
I really am depressed now, and it's from the doctor visit more than the level of disability. He held Remicade out like a carrot and when the lab results came back as he expected, no carrot? It's not great for the immune system, but if his reasoning is that's what he's concerned about, he's not told me.
He wanted me to ask the surgeon about any evidence of ankylosing spondylitis/joint inflammation during surgery and about the bone quality. The spine surgeon said no evidence of ankylosing spondylitis. But I never thought I had it in my neck! In my low back, my SI joints, my knee. I had a disc herniation in my neck along with the osteoporotic issues.
I feel depressed, I feel unbelieved and unbelievable.
I know that pain is subjective and not truly quantifiable and that one person’s severe is not another person’s severe--but I had natural childbirths. I can take pain—I engage in it like a Zen practice--thinking mind over matter, I can deal with this, I can deal with this, a few more minutes until I can lie down, concentrate on other things, focus on other things in the room--until I passed out from pain while doing this. Now I recognize there are some limits to mind over matter.
I hear writing about health issues can alleviate depression at least.
I should be blogging about ADAPT and ADA Restoration and more important things.
Update: I think some of the depression was PMS, worst right before. Aunt Flo just showed up at the door. (Oh my goodness, the things I would never tell people otherwise.)