2019 #goals I want my strength back. I want my LIFE back. It’s hard to believe that these pictures were taken less than a year ago. #thisisinvisibleillness Not to say I wasn’t struggling back then, but I was never this deconditioned in my lifetime as I currently am.
On a positive note, there’s an exciting week ahead. GI and neurology appointments to look forward to, it took me months to get a follow-up. While I am very fortunate that my medical team responds to the countless emails I send them, I feel the need for face-to-face visits.
CT scan is next to rule out carcinoid tumor given that my 5-HIAA came back double the limit. I am not worried, since carcinoid syndrome values are 3-4 times the normal, my endocrinologist reassured me, plus, I am aware that 5-HIAA is elevated in MCAS and malabsorption states. It explains my nutritional status....I refused the contrast dye and the ocreotide scan, even with premedication with IV benadryl. No more dyes in my body, I would most likely go into anaphylaxis.
Lots of plans for the months ahead, I must build some muscle mass & I mean it. I was never able to reach the minimal threshold in fat free mass for my height and age, functional medicine has been monitoring me for years. I am way below critical. I also hold on to a lot of fluid due to my vascular permeability, mast cell driven third-spacing, and low albumin from malnutrition. Edema is painful as it stretches the skin putting pressure on every organ, joint. Hoping that the combination of cromolyn, ketotifen and @katefarms peptide formula will help. I plan on rotating formula only because it seems like I am tolerating it well, and I do not want to upset my #masties with food. I was pleasantly surprised that ketotifen has anabolic properties next to being an effective antihistamine and an overall mast cell stabilizer. I am #hopeful
I also plan on ruling out Lyme disease since it has a lot of overlapping features with MCAS. I do not remember being bitten by a tick, but you never know.
I have yet to start my 36 weeks of cardiac rehab, next item on my list, as soon as I feel a little bit stronger.
I want to go back to pole.
Cont’d. in comments ️️️ - 5 hours ago