Nic - Did the pathology lab specifically look for mast cells in your endoscopy tissue samples? You have to ask specifically because it's not a standard thing to look for. If they didn't look, then you don't know for sure that it's MCAS, but yes, the eosinophils could certainly indicate MCAS.
LymesingerinCO - You asked if I lead a normal life, and the answer is definitely no. When I first got sick, though, the abnormality of it was stark and felt almost tragic. Since then, I have done a lot of thinking and exploration about
this, and now I am pretty okay with my version of normal most days. Internalized disability was an enormous hurdle. Tap into body positivity movements and disability communities if you need help genuinely feeling confident in your value as a person in a society that privileges some bodies over others. There's even a school of thought that says health and disability are just social constructs - like having no grip strength in your hand is only a disability in a world of doorknobs, you know? And it's okay to mourn that it's a world of doorknobs, and it's even okay to rage about
that and how it excludes you, but there are other forms of fulfillment and value and life. My life is very rich, even when it is smaller than I thought it would be. So to answer your question in a way that's closer to what you probably were looking for, I am home a lot of the time. The worse I feel, the more I am alone. Most of my friendships are text-based. I cannot work. I wear a mask in public for much of flu season. I use a wheelchair when POTS is acting up or when my limbs are not cooperating due to nerve issues. I don't drive because my proprioception is unreliable. All my family lives far away, and I have not been able to travel to see them in years, even when my parents have surgery and need my help. I barely know my nieces. There have been months that I have been bed-bound and/or unable to eat. Several ER visits per year, endless appointments (dentist, LLMD, acupuncture, craniosacral, specialists, etc.). I am not the parent or partner or relative that I hoped to be, at all, and I have to let people down a lot, including my young child. Only twice in the past year have I been able to be somewhere outside of the house with my child, just the two of us. I have not spent much time with friends, as I can't be upright for very long or out past dinner time or get places on my own or tolerate too much noise, and I have lost a lot of friends. I can't go for bike rides or walks because my stamina runs out without warning. I can't eat at potlucks or dinner parties or restaurants because my diet is so intensely restricted. I can't read or watch movies sometimes because one of my eyes has a swollen retina that distorts things too much. So no, I have far from a normal life. But I'm not actually unhappy about
it anymore, most of the time. I spend a ton of time with my child because I'm always home. I garden like crazy whenever I can, and plants are very forgiving and rewarding. I am a meaningful presence in lots of people's lives, even remotely. I have gotten good at setting boundaries, something it took me a lifetime to do! I am in charge of all forms of research, planning, lists, news, and education (we homeschool). I am the first to point out a gorgeous sunset or really ponder a great poem. I can do art projects and know myself really well, and I can be there for people who need me basically anytime. It's not all bad. Far from it.
