I'm disappointed. Even though I'm not completely surprised by the viewpoints expressed by my rheumatologist, seeing his judgement of me written in a clinic note feels bad; pure and simple. He wrote, that He " recommended fosomax for my bones-I declined. Recommended see neurologist for bilateral headaches- I refused, he recommended endocrinologist for possible steroid withdrawal-I refused. Patient refused methotrexate and actemra. Patient had researched gca on online forums and mayo clinic website.." He finished up by stating he would " try to preserve a therapeutic relationship but doesn't believe I have active GCA. " This really bothers me because I feel I've been labeled a royal pain in the arse: stubbornly, ignorantly refusing the treatment he could use to save my ungrateful life. He doesn't include the fact that ER doctors took me off fosomax due to esophagial spasms. He doesn't take the time to read and then acknowledge the reputable research in regard to proper tapers and headache presentations. He doesn't state that on the day of my TAB, I had no head pain at all, and the four days prior my entire head hurt-not just one side! It's as though all my realities with GCA are unimportant, figments of my imagination, or products of over excitement and anxiety. I'm stubborn and non compliant because instead of seeing yet another doctor id like to take advantage of the research and experience of others to regain my health rather than swallow toxic biologics.
It's like being in an abusive relationship, isn't it..... I need some truth.I need encouragement and need to hear I'm not at fault. Unless, that is, you all believe I am.