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.
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.