Autoimmune diseases is one thing I can not control. The myositis, the sjorgens, Hashimotos Encephalopathy, Hashimotos Thyroiditis, Autoimmune colitis, Raynaud's disease, etc. For which brought on small and large fiber neuropathy. And not to mention the lupus and scleroderma that hangs over my head.
But now doctors I can control. I can not believe I have ran into a bunch of petty, self serving neurologists. I was told one time from a RN that neurologists are a different breed and she is right on this account. My regular Neuro moved in Dec to a Clinic/Hosptital 5 hours away. I really cared for her. Not only is she good she is nice and caring. Well as I went to the normal clinic, I was treated strangley thought it was my own imagination playing over time. Well decided to take a long trip to see the neuro I trust with my life, as I am having such odd new worrisome symptoms. So on I went, and of course I still love her, she ordered a EEG, Spinal, blood work, close to home, she said to go her old clinic and have the EEG done, for which I did, and again was treated strangley. My Doctor kept waiting for the results, (been 2 weeks) so I emailed the clinic and explained that I will need a local doctor as well as Dr. Santillan, and then called to set an appointment. WELL this is what I got. I was told that I can not see both, it has to be their clinic, or drive to the old neuro Dr. Santillan but I can not have it both ways. I was so furious, and not feeling well, started to cry(for which I hate myself for) lol I hate to be weak, but I was angry, I cry when angry. I said that is fine then take me off your patient list I will see Dr. Santillan instead, five hours away. But now they still have the EEG results that I need. So now Monday I will have to call and make a stink and demand records. I can not believe this my doctor was well loved at her old clinic, yet they are being petty, and not willing to work with her as a team for my well being. Like she said in her last report that she left for next attending doctor, that I am a complicated case. Nothing to be proud of, but I am. I hate to go through this Monday, as I do not need anymore stress in my life. I am in a flare right now, colitis is flaring, my legs are bad, my gate is awful, balance is awful, walking into walls, and I have to go for the spinal tap Monday afternoon, YEAH. Did I mention I hate spinal taps. lol. Well anyway history for old clinic, they sure do not take their patients well being in mind over their stupid pride.
Now good things. :) Saturday in Chicago, I met with several other Hashimotos Encephalopathy patients that I have interacted with daily for a few years on facebook but now got to meet face to face. It was so nice to see them in the flesh,. We then had my son who is a film maker, come and do a documentary on the book, and the authors, (Nicola and myself) and a few of the HE sufferers. He and a friend who is a director worked for six hours straight interviewing and filming,. It was amazing. We are hoping to use this as an educational piece as well as pieces going towards our longer documentary that will be coming up. It went so well, so excited.
Well time to go, been so tired again lately. No amount of sleep is enough.
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