Thursday, July 23, 2015

The 1st Week of June + NOLA Time Fest (In Pictures)

I had Muscular Dystrophy clinic in Jackson on June 2nd.
It was an 8 hour round trip, and I managed to 
drive it in one day for the first time.
It didn't happen without drama, but I survived.
In a nutshell, they've done all they can do for me.
I'm supposed to be transferred to a clinic in 
New Orleans where they will continue to
document my condition and its progression.
As always, TMI can be found at Fighting HKPP.


I stopped at one of my favorite places to rest and eat.
Amazing food and nice folks in Hattiesburg, MS.

June 3rd: recovering from clinic.
The view from bed.
I had prescriptions to pick up,
so I had to put on clothes and drive.
My body was not okay with this plan.
Nor was my car. Flat tire.
I ended up at a shop, where I met this pup
who appeared to be having the same kind of day I was.

It was very warm outside. It was not a fun day.
They didn't have a tire to fit my car,
but they put the spare on for me and I went home.

June 4th, I was feeling worse. Really bad.
It was good timing, if there is such a thing
for feeling like death, as I had Internal Medicine
clinic that day. Dr. B and his nurse were not happy.
I have uncontrolled Hypovitaminosis D resulting
in the musculoskeletal disease Osteomalacia.
My kidneys are also failing, and my digestive
system is messed up to the point that an order was
written to check for cancer right then and there.
Cancer result was negative, as I stated in a previous blog.
Aggressive treatment ongoing for everything else, but so far 
it doesn't seem to be working. Or at least as expected.
I'll learn more at renal clinic in August, I guess.

June 5th, the car was serviced and I was rolling again.

June 6: My stubborn self crawled out of my sick bed
and drove to New Orleans for a Doctor Who convention
that I had been looking forward to for months.
NOLA Time Fest was on my bucket list,
so although exhausted and unwell, I went anyway.
The 2 hour and 10 minute drive turned into 4 hours
thanks to construction on the interstate.
Then I took a wrong turn at Albuquerque
and ended up on MLK Blvd being solicited by
a man trying to sell me a cell phone. (I declined, ha.)

I arrived to the venue overheated, tired, and stressed.
This is what my makeup originally looked like:


Holy meltdown of doom, Batman,
is that ever not how things ended up.
I was practically a declared disaster area.

Hello sick, swollen, melted TARDIS of fail.
Ha!

I laugh (thank God I can now), but I was miserable.
I tried very hard to cool down and be comfortable,
but I felt terrible and so out of my element.
I will be the first to admit that I have more issues
than Sports Illustrated, and one of those issues
is that I never feel like I belong anywhere I go.
When I arrived and felt like I shouldn't be there
I was pretty heartbroken over my regret.

I hid in the restroom's sitting area for a 
little while and took this stupid selfie 
because the dress that I will never wear again
as long as we both shall live will be
for sale for the low, low price of $20
very soon, probably on eBay.

(But wait! There's more!)

In all seriousness, things did get better.
I met a friend in person for the first time.
He's a wonderful human and I wish I could
clone him. I also met his gorgeous new wife.
I wish I hadn't been so ill, but I was happy
even if I was having a hard time showing it.

I also ran into a friend I've known since college.
He has seen my health plummet from being an
active college student to paralyzed in a wheelchair.
And through it all, he has always been so kind
and encouraging to me, even helping sponsor my
trip to Florida for genetic testing in 2013.
I'll never forget that, and when he gave me a hug
and said he was happy to see me up and around
it made such a difference because I knew that he
was the one person at this place who knew what
I had been through over the years and that the
fact that I was at Time Fest at all was a miracle. He
has no idea how much his presence helped me.

By then, it was time to check into my room.
I threw off the dress and yelled "never again!"
Ha!
I took a bath, put on something I could 
stand to be in (T-shirt and blue jeans, thanks),
gave myself a pep talk, and returned to the Fest.
After a panel, a friend who I call the fearless leader
said hi, and that was the breakthrough I needed.
(To myself: okay breathe. I can do this thing.
YES, I WILL DO THE THING!)


Okay, well, I hardly did all the things,
but I did have a nice time in spite of feeling
so badly. I was grateful to have booked
a room because I had to lie down a few times
and I needed oxygen for several hours.
Of course I was up at 4AM as always,
pacing the floor like I do, but at least I
was in a different place and had something to
look forward to that day - seeing some cool peeps
again and embracing their enthusiasm, even if I
did have to use a walker and a neck pillow and
spend my energy focusing on my next breath
instead of playing games or interacting with people.
 I was grateful.











































I am grateful, still.
As turbulent as I was,
I'm so glad I went.

I don't think many of these folks get how much they
make an impact. I've been a passionate geek all my life
and while I'm a bashful introvert, I just love passionate people
and it's hard to find anyone more passionate than a geek.
And though I don't feel like I belong in the world at times,
I figure this is probably as close as I'll ever get.
Life is too damn short. I'm going to hold on to every
good person, good minute, and good memory I encounter.

Time is precious, folks. Spend it wisely.