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Nephrology Clinic 4/8/2019
Apr. 14th, 2019 07:34 pmThe four hour commute was difficult. I was doubled over in pain and sick with my stomach on the way to clinic. To top that off, I got rained on, so by the time I arrived to the office I looked and felt like a declared disaster area. I was weak, somewhat disoriented, and in severe pain while talking with the nurse and doctor. I felt very defeated.
We discussed genetic testing. This is something muscular dystrophy clinic promised to handle. They brought in a geneticist, we filled out paperwork, then nothing happened and my follow-up messages were ignored. They dropped the ball in a big way.
So now my nephrologist is involved. At some point, I’m hopeful that this will finally happen.
Being in pain to the point of barely being able to sit in a chair or complete sentences was disheartening. My doctor always tries to relate to me in some way, I guess to ease my anxiety about answering questions. I enjoy talking to him, or I would if my brain would kick in and function properly in his office. I failed pretty hard, but I appreciate his efforts and his patience. He seems to be a genuinely good person.
He wants to refer me to a pain clinic. I can’t take most pain pills without serious symptoms, some of which involve breathing issues, but I have to figure something out, so discussing any reasonable options is the goal.
I don’t have a clue how any of this will happen financially. I can’t bear to think about it right now.
I briefly mentioned that I started therapy, but that it’s not working. I told myself out loud that I have to keep talking and reaching out to the therapist, which he agreed. I have told others that I want to die, but I couldn’t say it to him. I’m sure he already knows, thus our conversation about finding quality of life and an eventual cure.
He asked about my mother, who had the same symptoms but refused to pursue diagnosis, citing religion as a reason. She died in a paralytic state while also suffering from cancer (which she also refused treatment for). She didn’t want me having medical care either and accused me of having “a lack of faith” and “serving the enemy”, complete with performing countless exorcisms and eventually kicking me out for robbing her of her valuable time and spiritual gifts. It was a sad and scary era for both of us, to say the least. My medical journey is a source of trauma that has followed me through three decades.
I went ahead and mentioned this because it is one of many subjects of my stress therapy, which I’ll blog more about soon. I need to get past my next session first. Just know that rare diseases are painfully real and come with much grief and baggage that far surpasses the straightforwardness of medical literature out there. It has been a long, exhausting road to today, but for now, I’m still trudging it as best as I know how.
