Wednesday, June 3, 2015

June 2015 MDA Clinic Update, Courtesy of Twitter

For those who are unaware, I go to an MDA clinic twice a year for assessment of my Familial Periodic Paralysis. The team is very nice and they have learned a lot about the disease due to my extensive history and information that is thankfully now easily accessible online. It has been a long road, but they are trying and so am I. I'm grateful they are there for me. I know others haven't been as lucky. If you are still looking for help and are able to travel, you can find them at MDA of Mississippi at University of Mississippi Medical Center. Prepare to prove you have the disease via repeated consults, tests, and/or medication which may or may not be risky.

I documented my clinic appointment on Twitter yesterday:

2011 was a horrendous year that I still can't believe I survived.
2012 landed me in Telemetry unable to swallow, so it wasn't much better.

Possibly due to the heat + driving 4 hours to clinic.
Will keep an eye on things.

The CPAP is a fail, by the way. I'll explain later.

My right leg was bent at 36 degrees for over a year.
It's almost straight now (around 4 degrees) thanks to a Dynasplint.
I still have permanent damage, including nerve damage to my 
quads and a wide area surrounding my patella. Yet...

I wish I could make people understand just how laboring it is to take a full breath.
This sucks. I have no other way to put it. It's painful and difficult and it sucks.

I'm on a high-risk cocktail of medications
that come with their own delightful side effects.
The delightful part is sarcasm, if you weren't sure.
I hate all these damn pills, but they're the reason I'm alive.

Translation: Dr. F at Renal Clinic who is prescribing the meds
is doing everything possible. They are keeping tabs on my treatment 
there and offering whatever support they can think of beyond that.

Due to the fact that it is difficult for me to 
make the commute to Jackson 4 times a year, 
I asked to be transferred to MDA 
in Louisiana, which is half the distance. 
I will still go to Renal Clinic in Jackson.

This is a joke.

The hashtag - also a joke.

The next day...

My day did not go well, and I ended up 
back in bed sicker and weaker than I started.
Major fail.

I don't always flood Twitter with HKPP updates, but feel free to follow there if you like. I do bring awareness at times and it would be nice to have other folks there who get it. I appreciate those who already follow quietly. You know who you are.

Sadly, Renal Clinic is going to have to be rescheduled due to my car trouble. I'll update when I manage to finally make it back to Jackson.

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