Friday, December 2, 2016

Facing Forward: Chelsea

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name:  Chelsea
Location:  St. Paul, MN
Diagnoses & Age: Asthma and allergies at age 1; Alopecia areata at age 3 which morphed into alopecia universalis at age 28; Fibromyalgia at age 24; Hashimoto's at age 31; unknown CSF problem (still undiagnosed) at age 36; mast cell activation disease at age 42.

How are you currently treating your condition?
Treatment includes a cocktail of supplements and medications that add up to about 45-50 pills a day. I also have a shunt in the left hemisphere of my brain that most recently failed 17 days after it was implanted in May of 2015 (my 10th in less than 4 years); the hope was that it would help to move fluid that seemed to be getting caught around my brain stem, but my body does not like to have foreign objects implanted in it, so it strangles and/or clogs the shunts. I also attend mental health counseling sessions every other week. I get monthly massages because I have to lay flat to relieve the pressure in my brain but it makes my fibromyalgia go nuts. And every day that I am able to (if I'm not fighting a cold or infection, like now), I sing. My neighbors in my apartment are lucky I'm not tone deaf because I'm certainly not shy. 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge since being diagnosed for my MCAD is figuring out exactly what will trigger it, including food dyes, detergents, and temperature. My doctor said that even certain vibrations may set me off! Every day gets me closer to being called back to the mother ship, I swear. As far as the mystery CSF problem goes...well, I don't have a diagnosis, so that's a huge problem. I didn't know doctors could tell me to go away and not come back. I didn't know the Mayo Clinic could tell me not to walk through their doors because I am "too rare to diagnose or treat" (and therefore bring down their stats showing their success rates). I am still trying to find a neurosurgeon and neurologist in Minnesota who will take me on and I've worked my way through every healthcare group in 16 months and I'm not allowed to go out of state. I'm now working with a non-profit group that is trying to advocate on my behalf to see if they have any sway. 

What are your favorite tips and tricks for managing everyday tasks?
I am not sure if I have favorite tips or tricks, but I make sure I limit myself to one chore a day, not multiple chores. Of course this is nearly impossible if you have children or pets. They keep you on your toes constantly. I have neither, so that's the only reason that rule works in my world.

How do you manage to keep facing forward every day?
Whenever I have particularly rough days, I watch videos of babies laughing and animals being goofy. And again, I sing. What my neighbors must think!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would tell my past self to take that backpacking trip across Europe. Though I have made it over to that continent to visit friends three times, I should have done the hostel, no-shower, wash-your-underwear-in-the-sink trip when I was 19. I would have also told myself not to be so hard on my younger body and hate it so much. I would love to have that body back.
Do you have a blog you would like to share?
My blog is The Sick and the Dating. It does have an adult theme and adult language because I am an adult, but not every piece is rowdy.

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