Wow...It has been a few days since I posted last. It has been rough. I have not been doing much, just waiting. Just waiting for the results of the spinal tap. Although yesterday I had an appointment with my primary care physician for the first time since my visit at The Chiari Institute in New York. This is how our healthcare system is supposed to theoretically work: You go to your PCP (Primary Care Provider). They send you to a specialist. The specialist corresponds with your PCP. You then go back to your PCP. Your PCP then manages all of your care. So no matter how many specialist you go to, you PCP knows what is going on. I walk in and the medical assistant says (in an uninviting manor), "what are you hear for today? I have four items written down that I want to discuss with the dr. She interrupts me when I get to three and says, "that is already three and he will only do the most important things." I said, "Well they all have to do with my pre-op testing and diagnosis that he needs to know about. Just tell him I am here for pre-op lab work and to let him know my diagnosis from New York." I have to keep it simple. Remember "keep it simple stupid" or KISS. Well, that is what I had to do. The medical assistant was not the usual one. But when she realized who I was, she was much nicer. That is not acceptable. It is not acceptable to be rude until you realize who the person is. Then the doctor came in. His attitude was much the same. He was basically saying, "what do you want from me?" HELLO! You need to know what is going on with me! This is MY LIFE HERE!!!!! So I directed him on what I needed. What would I be doing if I were not a nurse? I would be completely lost. AGAIN, UNACCEPTABLE!!!!! I told him what my diagnosises are: Arnold Chiari 1 with cerebral spinal fluid blockage, Elhers-Danlos Syndrome, and Tethered Cord (Just as I suspected 5 months ago!). Then I let him know that the plan was to have the tethered cord release and that I was awaiting the CSF testing. Then I let him know that I also needed blood work. He ordered what I needed. Thank goodness I knew what he needed to order. Then I asked him where I could go and what we could do for the EDS (Elhers-Danlos Syndrome). He just skimmed over it and said, "There is no treatment." Then said nothing further. Now mind you, this causes fatigue, joint dislocation, and dibilitating pain. In fact, I have seen him several times in the past for issues related to this. Nothing from him at all, no hope. I have done research and believe that there is hope for treatment by a rheumatologist and they have braces to keep joints from dislocating and causing further damage. The Mayo Clinic treats it as well. I will continue to search. I will NOT leave it at that! I just can't believe he would just leave me with no hope! If I were at at different place in life, that would be devastating. Wow--Just Amazing. I have to get better already. So many people to help, so little time.
I have an appointment on the 30th with a new provider. I am going to see a nurse practitioner. She is a country girl that wears cowboy boots! Love that! She was also one of my nursing instructors in nursing schools. And, she also knows my husbands family from way back. She used to come down to the ranch and visit with my sister-in-law and mother-in-law. I hope this goes MUCH BETTER! I have to give much thanks to Terri. She is one of my friends and coworkers. She reminded me of her and that I could see her. And, she gave me the number. Yay...Wish me luck!
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