This is the most detailed description I have found about… it’s hard to say “the disease I have” even though that is most likely the case, for now I will just say “the thing that is wrong with me” because although it is miserable when it flares up, it is still relatively mild in comparison to how bad it can get. I first noticed this problem over 10 years and went to doctor after doctor. I was told it was everything from a sunburn or frostbite or allergies to Raynaud’s disease which really didn’t match up with my symptoms. Thanks to the internet and a doctor who was willing to listen to me I found this is what I had, and although I’m not happy about it, I am ECSTATIC to have found out what is wrong with me and that this is an actual thing and perhaps now I can find some relief. I no longer hold out hope that this is just an allergic reaction or something that I can treat and it will just go away. I have to deal with the reality that this is something I will most likely pass on to my children making being a mother to human babies rather selfish and unrealistic. I’m seeing my future a little more clearly now.
My senior year of high school I wrote a paper about the theory of the connection between physical and mental pain that my teacher said was the greatest research paper he had ever gotten from a student. The last psych class I took in college was neurobiology and I struggled through it trying to understand why I needed to know the role of sodium channels or the function of the dorsal root ganglion. I never thought this shit would hit so close to home. Casey always calls me his little furnace cause I keep the bed warm, I used to think it was cute, but ever since I’ve been diagnosed with this it bothers me when he says it, it’s just too large a dose of reality and I am embarrassed to tell him what’s wrong with me. Life is strange but I think that in the end it will all make sense.
