Do you know how long this post has
been a work in progress? Since the beginning of this blog. For real. But
it's time now. I've been wanting to tell you about my primary two
conditions but now that has changed. It seems like it's time to tell
about not just the BIG 2, but also the other stuff going on. Because there's more than my fair share.
^I
really and truly can't even begin to tell you how often I come up short
somehow and don't remember something I have. There are just so many.
Unless you're new to my blog, you know I love the
chronic illness cat meme. Laughter
is the best medicine.
I have been diagnosed with the following chronic illnesses/disorders: (In Chronological Order From Youngest Age of Diagnosis to Most Recent):
allergies&asthma, chronic sinusitis, NMH, ME/CFIDS, ADHD, OCD,
PTSD, TOS, and now doc's are not so gently hinting at a lovely little
gem called CRPS. Hearing that get tossed onto the pile of medical shit
in my life prompted me to revisit this blog.
This
meme, as so many others do, made me laugh at loud (because if you can't
laugh you'll just cry). I remember when I was diagnosed with TOS
thinking "Oh, cuz one incurable lifelong chronic illness isn't bad
enough? Really, God?!" But then time goes on and I remember that my
count is already plenty higher than one or two. That list is my chronic
illnesses or disorders that I live with on a daily basis (at least that I
can remember right this very moment). CHRONIC health problems, not
just whatever illness I've picked up along the way, like having my
tonsils removed or the random lump biopsied from my breast (at age 19)
or any of that.
Oh, yeah, but it does feel worth mentioning that there was once a doctor who diagnosed me and my knee injury as, "A
medical mystery... But you are too beautiful to play sports anyway; you
should just accept that you'll never play again, get a therapist, and
go into acting or modeling." That was at the ripe age or 12 or 13,
and my parents didn't sue or punch him; they listened to him and sent me
to a shrink. That was at the very beginning of my knee injury, that
later turned out to be a torn ACL. ACL tears are much too normal in
comparison to the rest of my list, so clearly I had to mix it up there
and have a record 8 surgeries on the same knee by the age of 23.
[Sidebar: In my
to-be-read stack of books is
Warrior Girls.
When I read the book jacket depicting a story of chronic injuries in
young female athletes, with a focus on soccer and knee injuries I damn
near peed myself with excitement. I had to have it. Kevin bought it for
me, along with a long-sleeved FCB jersey as a pre-op present back in
March. But my lust for this book waned when I learned
the book's central focus is on an athlete whose playing career ended after 3 knee surgeries.
Warrior Girls
also gives attention to a shocking entire 18-womaned roster with a
combined ACL surgery count of 9. These numbers pale in comparison to
what I did (stupidly, one may argue, but did nonetheless). Why wasn't I
interviewed?!
Seriously.
So
let's get to diagnosing me, shall we? I've been jacked up medically
since I was a wee tiny thing. Three times in my life, that I recall,
I've spent a year or so completely laid up/ill. I'm in my 4th. And then
there was definitely a 5th if you count the 2 (count em, two...) bouts
of
scarlet fever
both before age 4 (so I'm told). I don't fear death, the way many folks
do. I fear what my future likely holds: being so sick that I'm laid up
in bed, all the time, forever. Death is merciful when compared to a life
that steals your body but leaves your mind.
Allergies, Asthma, & Chronic Sinusitis
I
was diagnosed with allergies, asthma, and chronic sinusitis all by the
age of 10. I had been sick all of my life up until then. Mostly the
doctors had said it was recurring ear infections. However, in children,
sinus infections are frequently misdiagnosed as ear infections. Same
goes for allergies and hand-in-hand with that is asthma. None of that
was or is too exciting. I still suffer from these. I am allergic to most
everything there is to be allergic to: grasses, weeds, trees, flowers,
and all the lovely outdoorsy things. Inside, dust mites, dust, smoke,
and cats do me a great deal of damage. I carry an
EpiPen (an epinephrine autoinjector if you are unfamiliar)
all the time. I did as a child then stopped for many years, as my
allergies seemed to be managed well enough by allegra and zyrtec and
benadryl. In November of 2011 I was rushed to the ER when I stopped
breathing due to an allergic attack prompted by some unknown substance
(comforting, isn't that?) in the Outback Steakhouse meal I was eating. I
now carry an inhaler again. I usually have sinus infections all winter,
resulting in antibiotics all winter. 2011-2012 resulted in 9 months of
antibiotics straight. Pretty much the worst thing ever. Except for the
shit that's been going on now.
NMH
Neurally
mediated hypotension. This is a stupid disorder. Basically the heart
and the brain just up and suddenly don't communicate properly. When that
happens the blood pressure drops out of nowhere and the heart gets
confused. The heart gets the signal that the blood pressure is too high
and drops really low to compensate to fix it. This fun combo results in
fainting.
Only I have it one better. I have the
atypical version of this lovely condition. Instead of my heart rate
dropping, my heart-brain communication is doubly jacked up and my heart
rate spikes through the roof. It's the body's way of trying to increase
the blood pressure, by pumping it out harder, faster. Only the heart
pumping that fast is counterproductive: the ventricles/valves open and
shut WAY TOO FAST, subsequently not getting outflow of blood and
lowering the blood pressure even more. Then it's lights out.
It
can happen after standing for a long time or getting dehydrated or just
whenever the heck it wants. It is amplified by CFIDS and it ramps up
CFIDS. Fun tandem there.
I was diagnosed after I
fainted while driving. Fortunately I was only going 40 mph and it was
after the big blizzard of 2003 and there were high snow drifts on the
side of the road for my car to ping pong in (rather than flipping in a
ditch). Three sides of my car were banged up. Just not my side. I had
just passed someone going in the opposite direction, and it's a miracle
for both of us that I fainted seconds after instead of seconds before.
Being
16 my parents didn't exactly believe that I had crashed my car without
knowing how it happened. I told them it felt like I blinked and suddenly
was in a snow drift, facing the wrong direction. They grilled me about
if I was texting, talking on the phone, fiddling for a dropped CD,
anything. They didn't believe me at all--they probably would have if I'd
told them about the previous times I had fainted, but for some stupid
teenaged brain reason, I hide it from them. I only got taken to the
doctor as a way of calling my bluff. When it turned out I had a real
heart condition (and a fancy new University of Maryland Medical Center
pediatric cardiologist) they felt so guilty that they paid to have my
car fixed. Which was awesome, but almost worthless because the docs
benched me and said I couldn't drive until I went without fainting for 6
months. I still haven't gone that long, but I have learned how to
recognize the symptoms of an "episode" coming, so I get to a safe, lying
down position first.
Sometimes an NMH episode (as I
call it) just causes bad dizziness, no fainting, especially when I feel
it coming on. Sometimes it causes vicious waves of nausea. Like I said,
it's stupid.
So that's it for now. Like I said, it's so much, it seems to make more sense splitting it up. Part 2 will contain the rest of the list. Thanks for reading. Xo
