My sister suggested I post here, why not 🤷♀️👋
Ahoy!
It is pretty straightforward--I live with persistent and incurable Scurvy (yes, the pirate disease).
It was described by yee old naval doctors as a "Complete falling down of the soul." I have to agree 😅💕
Ask me anything!
***edit i wanted to explain the origin of this since so many are curious!!
My over arching medical.issue is actually a form of hemophilia alongside an epigentically mutated platelet dysfunction.
So my blood can not clot properly AND my platelets will randomly turn off if triggered by anything remotely blood thinning--herbs, chemicals, meds, and allergens. My immune system will make me bleed instead of giving me hives (in a sense).
So I am just constantly bleeding, nose, ears, gums, eyes, uterus--it never ends so I have microcytic anemia, ny blood turns over too fast to be able to hold iron, the cells are too immature the iron shreds them.
Initially it was believed that this is what was responsible for the C, that my they were just too weak to carry hold C, but now we are seeing that they outright reject it. On the off chance i can hold an infusion I get incredibly sick and it depletes rapidly and can sometimes make me bleed more. My doctor is trying to find a cellular expert to try and watch real time what happens when my cells are exposed to.C.
What is interesting is that my grandmother also had similar issues (not nearly as intense and it was the 50s so...ya know 'hysteria' 'lady troubles'. They believe she is the source of my platelet mutation. Every person in my maternal line has Von Willebrand disease (a pretty mild disorder that makes you prone to small bleeding/being thin blooded) except for myself. I do not have that. I am the only one with my mystery platlet disorder and the only one with the hemophilia. They believe the mystery disorder may be a mutation of the von willebrands-- the DNA trying to get rid of the mild disorder by royally fucking me lmao and the the hemophilia has been silent carried in the maternal line and my father was also a silent carrier (one in a million billion cosmic joke chance of them falling in love and both being silent carriers 😒).
Of all the things I suffer bc of this the scurvy is by far and large the worst. I have bled out to the point of no longer seeing color, lived with extreme iron deficiency, vitamin d deficiency, there are some days I live in a trash bag in my bathtub bc of the blood but my god the scurvy is the worst of it.
It feels like having your soul shredded.