I wasn't diagnosed until 13 years after I became very sick. My PCP cannot rely on the records from the medical school docs who cared for me before because, the local doc has lied and said I never had my illness to begin with because my inappropriate, now deceased, mother, upset his receptionist, who behaves in the same way my very ill mother behaved but she clearly had power over this doc so she got her way.
The rheumies in my community essentially have formed a cabal and have a number of rules they follow, such as not seeing any patient another rheumie refuses to treat, and many other equally unethical and probably illegal practices. The awful thing is everyone knows it including the state board of medical examiners and no one stops them! I would have to leave my community and drive more than 90 miles to see a rheumie in another town and the group home and supervisors of group homes, will not allow that.
So I have had no treatment since 2007 and am pretty sick now because in early 2012, my PCP relented and finally put me on an immune modulator, an antimalarial that begins with p, with very low risk of side effects. I had my 3rd ankle fusion last December, 2012, and the docs who took care of me in the hospital, hassled him about it because of the things the local rheumie said I didn't have it (4 med school experts in my illness say I have it and had it so bad I needed chemo for 2 years after it went into my brain) so he stopped the med and raised my prednisone dose, which has life threatening side effects. But my PCP can't do anything else and my inflammation is completely out of control since they stopped the very safe drug. I have had very serious pericarditis in the past and the inflammation must be controlled. I already have steroid induced osteoporosis, which caused a bone in my foot to break while I was standing still and cataracts and the list of dangerous side effects goes on.
How do I deal with it?
Years ago, 1985 to be specific, I was sent to a Center for Attitudinal Healing (based on book by Jerry Jampolsky, MD called "Love is Letting Go of Fear") for support while all my docs thought i was dying and I began to change how I looked at the world.
Now I study the book Love is letting Go of Fear is based on called A Course in Miracles, and though sometimes I forget, I try to live a life of forgiveness and love, including toward the Rheumatology Cabal and the entire medical establishment in my state that allows them to behave in such an awful and unethical manner.
Ultimately it comes down to forgiving myself and my own body for attaching me because as we both know is what happens in auto-immune illness.
Note: this is to answer the OPs question and the only way I can deal with this on and off life threatening illness. It is not an attempt to proselytize or convert anyone. I have tried to write this in as innocuous way possible so some person with a fear/rule based religion will not report this as inappropriate before the OP can read this. Every other time I have mentioned ACIM the posts are removed but no one is removed for mentioning the bible and to me ACIM is the 3rd testament. if you report this as an inappropriate post, you are denying me and many hundreds of thousands students of ACIM in the world, our rights to publicly discuss our religion, which is my right to free speech and freedom of religion, rights guaranteed under the US Constitution.
Also, someone will inevitably say I am lying and they can believe what they want. Every word i have written is true and in the real world I have the written records to back the entire story. How do I deal with these posters, I pray for them after I hit the ignore button.
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