Considering my last post was on my birthday and it is now May it's been a while. How have you been? It's has been rather hectic these past few months between school, college research, and the ever so complex medical side of things. We have not quite a month left of school and once it is over I'll hopefully be back to posting semi-regularly; I have some things planned! We have a bit more information on my current situation medically, as I'm still stridoring...Its been two months :(
It turns out that what neurology thought was a tic/Tourette's syndrome is actually a rare form of Dystonia- Laryngeal Dystonia I have an appointment with the head of the movement disorder clinic at BCH in two weeks and pulmonolgy and ENT have been following closely, I see them next week. Currently we're trying a Mast Cell Inhibitor to attempt to bring down the swelling at the back of my throat and see if it does anything as we have had a hypothesis that Mast Cell Activiation Disorder (MCAS) Might play a component if it tests positive in a genetic test that either the MDC at children's or Pulmonary will conduct along with screening for other genetic mutations.
Switching gears to school and summer plans; we get out on June 13th with normal school days up until the end of the year with finals built into them. This week feels more like the end of a semester though! I'll be doing a 2 week program at MassArt and being a TA at the MFA for a week other than working and going down to Providence to see a friend! I do have a few post ideas that I need to write and a few stories in progress that I will hopefully find the time to finish once the school year is over.
Sorry for disapeering for so long I had many times where I wanted to hop on and write something but life has gotten in the way lately, oh well!
If you do want to keep up to date I suggest following me on Instagram-
Art account (more active of the two) @Thedisc0panda
Personal/Disability advocacy account @Maxstock2020
Until next time,