So, this is my first blog post ever, here is what I can
promise you… my rules:
1. Bad language, this will not be a blog that some of my
favorite minors can read, we will give a self-imposed R-rating for language,
sexuality and stupid situational violence (like when the window fell on my head
on New Year’s Eve, Eve. There was a lot
of blood and broken glass, no bad language till after the concussion, my son
who was 7 at the time was with me… But the re-tell is soo good but R-rated)
2. Missssspellings, I stink at spelling (the nuns never were
able to fix that flaw) and more or less grammar too (I do feel bad for Sr. Teresa,
she tried her best)
3. The honest soul barring truth of living with a chronic disease,
raising two young beautiful kids, a crazy hot Clive Owen of a husband, who also
answers to the name Jeffrey, Jeff, Dadddddie and promised to love me in
sickness, health and foolishness, 20 yrs. ago.
4. And the crazy truth of the network of Doctors, friends and family
who duct tape me together every day…
5. And that all of my entries are as true as I can recall them,
on the meds that my medical team deems useful for the quality of my life…
6. And
oh yep, the names of many will be changed to protect the guilty.
7. And lots of ellipses, digressions, round about tangents that
may have a point (and many times may not (and many parenthetical asides))
Well alrighty then let’s get to the getting. I have told
this story so many times it’s sometimes hard to get started. How do you start a
story mid-story… Well you just dive in:
I have series of medical issues, that I will divulge piece
by piece, no point in freakin you out all at once… (Bells Palsey, Pulmonary
Embolism, Chronic Bronchitis, “Lupus” like symptoms which is the biggest
bullshit diagnoses ever (but I’m getting ahead of myself)). The biggest issue lately is Cold Urticaria.
Exactly. Cold flipping, Urticaria is when someone is
literally allergic to the cold.
I first noticed it way back in 2006, but it has gotten so
bad that I’m under the care of NIH in Bethesda,MD. For you non-beltway folks,
NIH is the Feds research hospital, so a big thanks for paying your taxes. Some great research is done there on unusual
diseases and I’m that girl. I get the GOLD STAR, I’m the worst case they have
ever seen. My body does two stupid things… I have the shortest exposure time to
cold, and I have a really bad reaction… which means I have anaphylaxis to the
cold and I wear a cute med-alert bracelet and carry an epi-pen. I’m a carnival
show, medical people love me cause I’m the best side show going. I always have
a room full of new friends who want to see me and understand what happens… I know
more about my disease and how it works than most ER staff, which is tricky
cause if you are swing into the ER Cafe, you are not at your best… and I’m never
offered a latte or a snack, it’s always the same IV fluids that if not warmed
will kill me… So they bring out the hypothermia gear and start a line… its
goofy…scary and I need to have my A team with me always or I’m screwed…. All fluids
infused with an IV have to be warmer than my core temp or it’s dicey,
So, Urticaria is from the greek for hive and that’s what I do.
If the wind blows, and you get that chill, I get hives, like a horrible bee
sting, and its anywhere my body is exposed, so my face, ears, hand, legs are
all big issues. I can get hives from ice in the freezer, cold tap water,
granite counter tops… I always have a sweater on when working in the kitchen. Walking
across the bathroom floor barefooted is a big, no. Forget the store, Target is
on my list since they put in grocery’s with big freezer/refrigerator sections
in my store… that sucks! Church is tricky because of air-conditioning in the
summer and it’s so big it’s really cold in the winter. Leather couches are a
problem, cold cotton sheets too! If your hand is colder than mine that sets off
a reaction up my hand and arm…. I’m a
freak show, wet grass, rain, pools NO, showers iffy…. The list is endless
So I get theses red welts where there is contact it takes
minutes or hours to go away… but what the issue is it dumps histamine into my
body, it’s a flood, sometimes based on the severity of the reaction I feel it… it’s
a woosy, nauseating feeling…can knock me on my ass for days... and then there is the cough… now I have the worst cough
ever… people move away from me in the drs office, at church, anywhere… it’s
scary, my kids hate it… its looooud and as a whooping sound that goes with it…
and it’s hard to manage. Harvard (that’s my pulmonologist), he hates my cough,
he always is worried I’m gonna crack some ribs… I bruise them all the time… I play
football with myself...
So, the good news, cause you gotta hear it… I have the best
support system ever, for someone who is a crazy bitch, I have an amazing team..
I’m loved, protected and supported… But I will share all my foolishness, Clive
thinks I need a place to tell my story for myself and for others… So that’s why
I’m here.
Of course the physical stuff is just half the journey. The other half is my emotional self and
faith. Sometimes my faith is strong and
I know I’ll get better, sometimes it falters and I’m not so sure. But, that’s part of the story as well.
Well that’s enough for today. I’ll introduce you to various members of my
medical team (including NIH and others) as we travel together.
Let the pilgrimage of the green couch begin…