“Argghhh!” I clench my jaw and bare down as pain rips across
my abdomen. I once described it as feeling like someone was striking a match over and over my raw inflamed stomach. My nurse, Tammy, puts a cold cloth on my head.
“I look like a Goddamn blow fish.” My body is a victim of surgeries, medication and treatments. A mash up of side
effects: anaemia, malnutrition, dehydration, scar tissue, pain -the list is endless. Everyone
tried to be nice about it. Yet, the truth is the truth. The steroid medication
they prescribed for my recent flare up has more bad side effects than good. One
of which is swelling of the face. It actually names this reaction on the pharmacy print
out as “Moon face.” I'm a weird sort of
size. I looked as though I were a water balloon and would burst! if you pricked me with a pin. Too pale, too puffy, too tired.
Tammy holds my hair back as I vomit into a basin. She’s
telling me for the fifth time today that my doctor will not allow me an
injection of pain medication. For the past 3 years my doctor has been telling me all my ailments could be traced back to being side effects of too many narcotics.
Nothing makes me more furious. If I wanted the medication to get stoned I’d get
it out of my kitchen cupboard. I bet it is easier to get it off the streets compared to what Dr Dick put me through.
The tension between Dr Dick and I escalated. We simply don’t like each other. Our personalities clash. For years I came to appointments, asking him to help me. It was impossible to talk to him.
Meanwhile, I continued to get worse. So bad that sometimes I had open my car door to vomit onto the street while stopped at a red light. I wasn't able to get groceries, unable to lift anything and unable to walk steady on stairs. Trying to sleep was a nightmare because of the pain and nausea haunting me all night.
Meanwhile, I continued to get worse. So bad that sometimes I had open my car door to vomit onto the street while stopped at a red light. I wasn't able to get groceries, unable to lift anything and unable to walk steady on stairs. Trying to sleep was a nightmare because of the pain and nausea haunting me all night.
It became desprate to the point
where if I needed or wanted to be somewhere, (like a wedding or out dancing with the girls, a long trip in the car) I would have to starve myself for the whole day. If I
didn’t my guts would reek havoc on me. I would be stuck in some grungy cramped public bathroom
stall reading who to "call for a good time" and being absolutely mortified and ashamed at the thought of them wondering why I’m taking so long. All the while regretting to have come at all. It's impossible to be sure and relax when you have no control over your own body.
A few years ago, in the washroom of a movie theatre, I came out of a
stall and splashed some water on my face when I overheard two elderly ladies
commenting rather loudly, “Tsk.Tsk. Disgraceful. Making herself do the likes of
that when she is already so thin.”
Dr Dick seemed to practice the same medicine as the old, outdated and more
traditional doctors. They aren't giving any thought to the new research, medications and procedures. I'm a walking example that they are certainly are not using all of what is available. It’s as though he has a one size fits all
approach to treating his patients.
Tammy comes back in the room with a resigned look and a med cup. “He
wants you to try and take it orally again, honey.” She rubs my back while I’m curled up in pain. Tears streaming down my face.
Dr Dick is doing this to make a point. He knows I have been
throwing up everything I've tried to keep down for days. He knows I don't absorb those pills. In two
minutes they will be back up and in the stainless steel basin beside me. He’s genius you see. Making me wait and wait
to see him. Having only oral medication until he finally comes to assess me. By that time, I will be
having with drawl symptoms on top of everything. He will walk in here and
he will not see me. Dr Dick will not see that I'm having a severe attack. Or that I am malnourished, anaemic, exhausted, nauseous, have a migraine and feel like the vice grips of
hell are clutched around my body.
No, he won’t see that.
Forty-five minutes later Dr Dick finally peeked around the curtain
and saw what he made sure he would see. A scraggly grey young lady, sweating, shaking and moaning – not with pain but
from narcotic with drawl. With all the
symptoms explained away as caused due to my pain medication. That is what he sees.
“Well Jane, we should stick with the steroids. I think you
should go home and try to cope. Do
everything that normal people do. I know it’s going to be rough but if you
stick with it, you will just have to accept that this is your body and your
life and it will become normal for you. And it will jut become a part of everyday. In terms of the pain medication I think
we’re clearly looking at having someone talk to you about addiction.”
On top of the ‘moon face’ there’s also another side effect
to the medication -moodiness. Moodiness? That’s an understatement. My mother calls them “bitch pills” Frustration and temper are welling up inside my chest. I knew I was raising my voice and I knew there were other patients along with their visitors and nurses in the room with us. But
I was over tired and in such a state of pain and rage, that I was probably boarder line
insane – it felt really good to scream in his face.
“LOOK AT ME!” I was
sobbing and yelling. I lifted up my shirt. “Does THIS look like someone who
has no pain or health problems aside for the fact that I won’t
fucking ‘cope’. Does this not look like the belly of someone with chronic pain?! I am not addicted to narcotics. I'm addicted to the relief it gives me!” Scars ran down the
center of my torso , the result of being opened fifteen times since I was
twelve years old. The longest one an impressive result of ninety-two stitches and fifty-three staples. I have a long tube inserted into my stomach that us used to
feed me chemically predigested formula when I cant take in food on my own. In
my chest there is a catheter in the main vein of my heart which acts as a
permanent access to veins when I need fluids, medications, and TPN.
I could hear him muttering passive aggressive things such as,
“Jane, quiet down now, I’m just trying to benefit you in the long run. This is
just the drugs coming out of your system.”
I sat up in the bed and attempted to compose myself. I hate that I can’t get upset or angry
without blubbering like a baby. I am such an ugly crier. I blew my nose, took a
sip of water, put my hair up then looked at him.
“You are the biggest asshole I have ever met. You tell me how
I feel instead of asking me how I feel! I know more about my illness than you do! I
feel sorry for your patients. I am never going to be one of them again! You
always treat me as though I am a junky when my real serious problems are getting worse because you just keep throwing steroids at me! The only
reason I’m having with drawl symptoms is because you haven’t giving me anything
for the pain in 72hrs! For the past ten years I've been taking it every three hours!
All I want is to be well enough to play with my son, and have some sort of quality of life! I can’t because you won’t treat real problems. I’m making sure that you are not to have anything to do with me ever again! Not to even so much as look at my chart. You are not allowed to treat me or consult any doctors who will. GET OUT of my face!"
I pushed past him and the team of residents, storming out of the room as fast as I could while pushing an IV pole. Hospitals are crowded with people, supplies and nurses desks But there was one place no one would find me. I sat in an old shower stall next to boxes of Christmas decorations for two hours. My whole body shook as I was sobbing. My nose was running, I was a river of tears, digging down deep to cry everything out of me. I felt so heavy with it. So I let it all out.
All I want is to be well enough to play with my son, and have some sort of quality of life! I can’t because you won’t treat real problems. I’m making sure that you are not to have anything to do with me ever again! Not to even so much as look at my chart. You are not allowed to treat me or consult any doctors who will. GET OUT of my face!"
I pushed past him and the team of residents, storming out of the room as fast as I could while pushing an IV pole. Hospitals are crowded with people, supplies and nurses desks But there was one place no one would find me. I sat in an old shower stall next to boxes of Christmas decorations for two hours. My whole body shook as I was sobbing. My nose was running, I was a river of tears, digging down deep to cry everything out of me. I felt so heavy with it. So I let it all out.
I hadn't known that within a few days I would meet my currant
doctor, Dr S. She did more for me in the first three months than Dr Dick did in five
years. She was able to supply me with new medications, set up appointments to Medical
Day for IV fluids, iron, and antibiotics which allowed me to have more time at home. She was accessable when
my symptoms began flare. Although I’ve never gone completely into remission, and I've spent much of the past decade in the hospital - under her
care I went fourteen months without a single night in the hospital. That is the longest stretch I've ever had. She treated me as educated patient and listened to me.
Dr S not only saved my life - she gave me a life.
Dr S not only saved my life - she gave me a life.
