Blah

The title of this post confirms my current mood which is blah. My appointment came and gone with my motility doctor. He believes I have a mitochrondrial disease, but isn't ordering any tests to confirm because there are no cure for those types of diseases. His main goal is relief of symptoms. He put on Mestinon to see if it helps with motility in the small bowel. My gastroparesis isn't being treated at this time because every medicine available will make my tumor med useless. Every med will increase my prolactin levels which my body is already making too much of thanks to my prolactinoma. On top of the Mestinon, he prescribed a pill form of marijuana to help with my nausea and give me an appetite. I haven't gotten this pill filled and really have no desire to even try it. I would rather deal with the vomiting then go against my morals. My mom, dad and brother are all potheads and I promised myself I wouldn't ever try it. I know the pill isn't the same thing and its for medicinal purposes, but no thanks. This doc checked my micronutrients and they are all normal, but the low side of normal. He wants to keep an eye on that and is thinking I may require a feeding tube at one point. If it ever gets to that point, then I'll try that other pill. But only if this doctor thinks I need a feeding tube.

Now, my endocrinologist thinks I have dysautonomia. That is an autoimmune disease attacking the autonomic nervous system. I have more of the symptoms then I do of the mitochondrial disease. There is a blood test I can take to confirm diagnosis. I got like 12 prescriptions for blood work that I need done 2 weeks before my next appointment in October. He said there is no rush since I am already on one of the main medicines for dysautonomia which would be the mestinon.

I really have had enough with doctors. One doctor thinks its one thing, another doc says something else. But one thing they both have agreement on is I'm not getting better. My digestive system is fucked. I wish I knew somebody who is going through the same things as me. Another thing happening that I could do without is my orthostatic hypotension....I either faint or come close to fainting whenever I go to stand up, no matter how slowly I stand. That is also a sign of the dysautonomia.

I can't believe summer is almost over. At least my girls had an eventful summer and I got my own car  finally. A Mazda5, which is a microvan. I absolutely love it and love not being stuck at home when my husband is working.

So, there is my update. Uneventful, and still alot of unanswered questions.  So, with that my closing statement is this: blaaaaahhhh.