Smoke is ClearingAugust, 2018
Smoke is Clearing
This happened last year too and I had to wear the mask for several days inside. We just got a good full day of rain that helped get rid of the smoke and make the air quality good enough that I felt comfortable enough going out in it. It was getting colder so I had to bundle up more so I could stay warm.
One of the challenges of having all of my health issues is that I have a really hard time regulating my temperature. When it is hot I have my cooling vest that helps keep my core temperature stable, and when it is cold I have to wear warm enough clothes so I my muscles don’t get too cold. If my muscles get cold they start to stiffen up really badly. We believe this is due to my periodic paralysis.
It really felt good to get out of the house and I can’t explain how much the trackchair really helps me feel more independent and free.
Sorry I have been so quiet for a while, but life has been interesting. After being approved for Keveyis, I had to work through what they call a titration schedule to determine the best dosage for me to take. I am very glad I did too. When I tried to change from 25mg...read more
So, the past couple of weeks have been interesting. I finally received a response from the lab (Illumina) that originally reported that my variant might be related to Andersen-Tawil syndrome. They stated that they have done more research since they originally...read more
Back in March I was made aware of discounted whole genome sequencing (WGS) from Dante Labs as part of an agreement with a periodic paralysis genetics support group I am a member of on Facebook. I sent in my sample and have been waiting since then to get the results. ...read more