I have ME, no not me, M.E., silly

I have ME, no not me, M.E., silly

~~August 08, 2011~~
I have been diagnosed this past year,
by a "officially" and "unofficially"
pointed me towards, when I came in with such
severe fatigue I could not find words to put to it.
Fatigue definitely did not do it "justice."
Exhaustion didn't even do it justice.

Just like freaking nothing does the pain from
CRPS justice, I can't say there's anything
that does this problem justice.
See, when she asked me if I had an "inciting event,"
or an illness I had where I felt that I wasn't the same afterwards
(RSD not enough? But this began before RSD did),
and that was a big huge YES!!!!
In 2003, I was in Houston, visiting my brother, and
I had emergency surgery
(yeah, leave it to me to need surgery on vacation,
but I had been recovering, albeit more painfully than I'd have
expected, but I was in the shower, put my hand on my
lower abdomen above my c-section-type incision
(the "bikini cut," on me???), and for the love of God,
I felt the largest abscess I had ever had...
from my incision way down above
my pubic bone to just below my belly button.
Short version: I spent the next seven weeks
in a Houston hospital, 2 in the ICU;
where I was admitted to within 3 hours of hitting
the doors of the ER, and intubated on a vent.
I was so sick, they told my family to start making plans.
But I proved them wrong.

But I've been totally fagged out ever since,
and, I gave her that as my "inciting event."
So she wrote down a name on a piece of scratch paper
and said, "I didn't give you that, because officially
I have to call it "Chronic Fatigue Syndrome."
I'm like, "You have got to be kidding???
I had neuropsych testing in 2001, and my IQ had tested at 174.
I feel like someone has converted it to
Celcius, and it's not my pain meds, either, darn it!!!"
(btw, 174 converted to Celcius = 79,
rounding up, which would make me borderline retarded)....
So, I am doing stupid crap: forget to check my junk mail box--
where all my friends invites went!!!
So anyhow, I was diagnosed with ME,
or Myalgic Encaphalomyelitis, which is
basically what the pathology of CFS REALLY IS!!!!
Now, it sounds like I am going to die soon, but
if I follow the recommendation of my Canadian doctor
(even though I am a US citizen, he does take
4 people a month from the states for Skype interviews,
and so forth, and I feel like he's saved my life.
Slept this evening from 5:45pm until 10:30,
nothing of it, a normal occurance.

That is a snooze for me. A night of sleep?
That would be going to bed at 7-8pm, and getting up at 11am or noon.
And still not feeling rested.
But it's awesome, just like when the
RSD was finally diagnosed,
even though I still feel like something is missing.
Oh, right. My health. If you see it, let me know--
I've been looking for it for some time now.
But in reality, I have to deal with the flares with a
disease that amounts to left sided heart diastolic failure.
My heart doesn't fill properly on the left side,
where the heart pumps blood, that is supposed
to be freshly oxygenated from the lungs
(yes, on oxygen now--helps tremendously, especially with activity!!!),
and it is, but I don't get enough blood from the lungs to
fill properly and therefore, I only get enough blood pumped to my body to um
....stay up, awake, conscious and functioning....
Then throw in an RSD flare. I can't sleep, but need to, and when I crash, I crash hard. Not uncommon that I won't be seen for a week or two.

I set the record in the clinic for my PCP
for the lowest Vitamin D level at 6.
I had to take D-3 for 8 weeks at 50,000IU twice a week.
Now, I just take D-2 at 2,000IU/day, ever day.
Now, the Vitamin D supplements on the shelf?
Usually, they have 200IU per gelcap.
Missing a "0?"
Freaky, but my doc says that low Vit-D
levels are coming up more and more, and ever lower levels.
But mine she said, was an eye-opener.
Explains why they drew it four times, doesn't it?