Time with Friends

August, 2018

Eastern Washington, Friends House

Last night was the first time I have felt like a normal human that has rare diseases in a long time, rather than me just being my rare diseases.  My wife is an author and one of her friends, who is also an author, invited us out to their house in eastern Washington to celebrate her birthday.

I was hesitant to go because it is an hour away from our house, and it was somewhere I haven’t been before.  I decided interacting with other people outweighed the potential problems that may occur and decided to go.  And I haven’t been that happy with a decision in a really long time.

Their house is on a large parcel of property, and there is a lot of areas to be able to use the trackchair in, so we packed up the trackchair and headed out to their house.  We were an hour late because getting kids together and trying to tie down a trackchair takes more time than we are used to, but nobody even noticed and just welcomed us.

There were two other couples at the party included other kids our kids age, so the kids were able to play together.  We spend the night having conversations with everyone else at the party through the night and it was truly great and made me feel like a normal person.  The author’s husband even works in the IT industry in the same areas I used to work in so we were able to have some really interesting conversations around that.

The really great part about it the night was how well my rare diseases were accepted and I was treated like a normal person.  Every other couple there seemed to have had experience with chronic illnesses, so when I had attacks others just jumped in to help my wife in treating me.  Then after they made sure I was okay they went back to treating me like a normal person and just continuing our conversations.  It was the most amazing feeling to be around a group of people that just accepted me for who I am and treated us like we had been friends for a long time.

I did get to take my trackchair around the property and bit and even give a few rides to the kids because they thought it was so cool.  I am so appreciative that there are people out there that made me feel like I belonged.  Thank you to everyone at the party and we can’t wait to meet again!

Recent Tracks


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

Diagnosis and Treatment Update

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

Genetic Testing Results

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
Share This