Frustration and Inspiration

I want to comment on frustration and I want to try and inspire myself, with the next few paragraphs I write, to be better, to be calmer, and to have more hope. I wrote a few weeks ago about The Good Doctor and I feel that I need to return to that subject, particularly after my last post The War. I took a hiatus from blogging last week to have my wisdom teeth out, it was an experience, (since Ian and I were struck with a stomach bug the following day and spent all of Valentine's Day vomiting) but I am feeling much better and almost fully recovered, during this break I had another doctor's appointment with the good doctor, who turns out to be not so good. My feelings about this are simple, frustrated and sad. I left the office feeling miserable, having spoken to the doctor for less than 5 minutes, having the medical assistant ask me if I was still trying to lose that holiday weight, and having the lights in the waiting room turned off before I left the office. I came home and cried, and I would've loved to eat my feelings but I was still in the chipmunk stage post-wisdom teeth and was on essentially a liquid diet. The frustration I think comes from the excitement I had originally experienced, the thought and the hope that someone was going to take a special interest in me as a patient, and find a better plan, find a better way, to make me feel better. This doctor who told me 3 weeks ago that I was a difficult case because: 1. I have been treated so aggressively for so many years that the traditional clinical presentation will not be there, 2. all of my blood work comes back positive but my symptoms don't fit simply into any one category, and 3. aggressive medications have not alleviated chronic systemic symptoms, now essentially dismissed me from his office with a diagnosis of: classical and well controlled ankylosing spondylitis with every day "aches and pains". My description of my last "flare-up" led him to a quick 30 second lecture on how the normal population also experiences muscle soreness without having any type of auto-immune arthritis. He then examined my hands only, looked at them and said, "Yeah, there's no way you have rheumatoid arthritis, your fingers are fine." I feel so strange to say that, that statement made me angry, but he was completely contradicting what he had told me 3 weeks ago, which was that: I am not a patient who will present with classic clinical signs which for RA would be inflammation or deformity in my hands. I am a 21 year old patient who has been treated very aggressively for over 10 years, there is no way that you should expect to see that type of deformity after that, no one would take or prescribe these medications if that were the case! He has also chosen to dismiss all other symptoms involving other systems, like GI issues, or numbness, or my numerous positive blood tests. He recommended that I being to wean off of my weekly Humira because he feels that I am well-controlled. What he meant by wean was stop cold turkey because the prescription he wrote me was for bi-weekly injections. My next appointment which is in a whopping 3 months (which after a change in medication is a VERY long time) is not even with him but is with the physician assistant in the office, he didn't order any follow-up blood work, he didn't offer any referrals, there were no time for questions, and he will see me back again in 6 months. I may sound crazy, but all of that is just wrong.

So what does that mean? I can bitch and moan and whine and hate the health care system all that I want but none of that is going to make a difference for me. I can't rely on some miracle "good doctor" to show up and make things better. I certainly wish medicine worked that way (not only for me but for so many other people who experience similar and worse struggles than I do), but it doesn't. I wish that I hadn't been such a passive actor in my heath for such a long time that now it is so difficult to make appropriate changes, but what can I do except move forward? Hope is really one of my most favorite things and I am choosing to have hope in myself and to give myself an opportunity to feel better.