The
summer is slowly fading in to fall. The mornings are cool and breezy and waking
up with the windows open is so refreshing after record heat this past summer.
Fall term in college is well underway. With these changes, unfortunately, cold
and flu season has also arrived. For an Addison’s patient, this is a recipe for
disaster. A daily dose of steroids to maintain health is intended to stop the
immune system from attacking the adrenal glands and replace the cortisol that
they no longer produce. When the flu creeps in, the normal body will naturally
produce more cortisol to try to fight it off. Addison’s patients don’t have the
same ability to fight off disease, so they have to be especially careful during
cold and flu season.
Yesterday,
I got to experience this phenomenon first hand. I woke up coughing and sneezing
with a sore throat. I had been fighting the sore throat for a couple of weeks
already, but yesterday, it finally got the best of me. In addition to my daily
dose of medications, I took a “stress dose” to give my body the extra defense
it needs. By the time I finished an eight and a half hour school day, I was
wiped out. The first Presidential debate was on television and I wouldn’t miss
it for the world. I was like a little kid on Christmas waiting for Santa to
come! By 8:00 at night, I had taken my bedtime dose of Hydrocortisone and
Prednisone and I was in my comfy jammies (bottoms adorned with donkeys and my
Obama 2012 t- shirt), nestled in bed, snuggling with my girl and my Pit Bull,
Aiden. The lower back pains that had been bothering me all day were starting to
get worse. By midnight, it was apparent that I would need emergency treatment
so off to the hospital we went. On the way out the door, I grabbed my Phi Theta
Kappa hooded sweatshirt to keep me warm. I also made sure to bring my information
sheet for emergency medical personnel so the hospital staff would know how to
treat me since Addison’s disease is so rare.
Once
at the Emergency Room, the pain was increasing to the point that I was in tears
and things were getting a bit foggy. I got signed in and the greeter told us to
have a seat. A little while went by and they finally checked my vitals: pulse,
blood pressure, and temperature. They put me in a wheel chair and rolled me
back out to the waiting room. I felt like I was going to die. The pain was so
severe that I thought I would pass out. Then the chills and shivering took
over. That’s when my partner went over to the greeter and said, “She’s
freezing, which means her blood pressure is dropping. Please hurry!” The staff
brought me a warm blanket and still, they left me in the waiting room.
After
waiting for over an hour, they finally had a room open up and put me in a bed.
Nobody on staff had ever heard of Addison’s disease and several of them
commented, “Oh, I’d like to do some research on that”. Yet, nobody would even look at the fact sheet I brought for
them. The nurse came in and hooked me up to a monitor and said the doctor would
be in soon. Thirty or so minutes later, the doctor came in and listened to my
lungs, felt my stomach, and asked me, “Do you got blood in yer pee?” My
girlfriend explained to him that I was having an Addison’s crisis and needed
treatment. He blew her off and said he’d be back. The nurse came back in the
room and explained that they need a urine sample, blood work, and x-rays. I explained
to the nurse that I didn’t need lab work, I needed treatment. She stated that the doctor wanted to test me for drugs.
He also needed to make sure I’m not pregnant so he can do x-rays. I pointed to
my girlfriend and said, “I’m pretty sure SHE is not going to get me pregnant!”
I also assured her I am not on any kind of street drugs. She then resorted to bargaining
with me by promising that the doctor WAS going to give me pain medication, but
he needed the lab work first. I told her to go check my records; that I had
been to this ER many times, had tons of lab work, x-rays, and even have scar
tissue from all the IVs I have had. I reiterated the fact that I do NOT have
insurance and I refuse to pay for unnecessary testing – especially since they
will not send the results to my regular doctor anyway, despite several
requests. She said my only other option was to sign a waiver saying that I refused treatment and release me.
It was at this
point that I was fuming! I finally yelled at the nurse and insisted that I did
not want or need pain pills – that what
I need is for someone to look at the damn fact sheet and administer the treatment
that is says I need. What part of life-threatening did these people not
understand?! I was not there to “score” some pain pills. I was dressed in
pajamas with Democrat donkeys all over them (on the night of the debate) and an
Honor Society sweatshirt. I have a Medic Alert bracelet on with the
corresponding ID numbers on a fact sheet which lists all the symptoms of an
Addison’s crisis, along with the treatment necessary, all the medication I take
daily, my doctor’s contact information, and my emergency contact information.
This poor little sheet is in inside a plastic sleeve and is so worn that it
looks like it has been around the world and back. I am obviously NOT a drug
addict, but a total nerd, who is very knowledgeable about my disease. I understand
that most medical personnel are not aware of this rare condition, but I have to
live with it every single day.
The
nurse eventually understood where we were coming from and asked to see the fact
sheet to show to the doctor. She promptly returned to my room and said she
would order the Sulo-Cortef from the pharmacy and it wouldn’t take too long to
get it down to the ER. Three hours after arriving at the ER, the nurse finally
came in with a monster needle. She stood behind me and said, “Okay, you’re
going to feel a big stick.” All I felt was her applying the band aid. The pain
in my back was so bad that a huge needle didn’t even faze me.
This
is not meant to be a political post, but for my readers from the United Kingdom
and Canada especially, this is the story of health care in America today. Living
with Addison’s disease is no picnic, but it is manageable. Living with Addison’
disease with no health insurance is a little trickier. I am forced to be my own
advocate because, sadly, nine out of ten doctors will not listen to me. Ego
sometimes gets in the way of saving lives. When it comes to your own health,
you must remain diligent. It’s YOUR health – not anyone else’s. What do you
think of the current state of health care in America? Leave your comments
below.
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