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| Caraline Shedd |
I have always been labeled a Hypochondriac. A bump on the head or a
scrape on the knee just always seemed to hurt more than it should. I
would complain and complain because the pain just wouldn't go away and I
would beg to go to the Walk-In assuming the worst. My mom usually
didn't give in to my crazy thoughts and I learned to just "walk it off."
Knowing what I know now, I probably would have "walked it off" right on
over to a pediatric rheumatologist's office.
I was 16 years old and a sophomore in high school when I started to have
symptoms of chronic pain. I was fatigued and had constant muscle pain
no matter how much or how little physical activity I did that day.
Throughout high school, I was very active as a member of the Junior
Varsity and Varsity Volleyball team, a leader in Drama Club, and a part
of many other extra-curricular activities. I loved being involved in
school activities and had no intention on slowing down.
I dealt with the pain for the next three years as best as I could and
graduated high school on June 25th, 2011. My plan for the future
involved attending my local community college to be able to apply for
the Disney College Program. I loved performing and entertaining people
and it was my dream to become a Character performer for Disney. After
completing a year and a half of college and being denied twice by the
college program, it was time to switch up my game plan. I changed majors
from Liberal Arts to Communications and Media Arts and this brought on a
lot of stress. Throughout college as my stress increased from seemingly
never-ending life problems, my pain only got worse. This is when I
finally decided to see a specialist and after visiting my primary care
doctor, I was recommended to a Rheumatologist. At my first appointment,
the doctor did the routine look-over and asked me everything about my
pain. She then scheduled a Nerve Conduction test/ Electromyogram (EMG)
which measures the electrical activity of muscles at rest and during
contraction. Basically this was to test for Amyotrophic Lateral
Sclerosis (ALS) and to look for any muscular deterioration. This was one
of the most painful experiences of my life. Not only was I already in
pain as per usual but then to have a needle basically electrocuting me
in the most sensitive parts of my body was just pure torture. I also was
instructed to have an MRI done to check for blood clots in my legs. The
next time I visited my Rheumatologist she informed me that both tests
came back negative. She said that she had exhausted all of her options
and that it could only be Fibromyalgia. I had done enough googling ahead
of time after the testing to realize that I definitely did indeed have
Fibromyalgia. At that point I had told her that I wanted to treat this
as holistically as possible. She ignored my request and asked me if I
had trouble sleeping. I replied "Of course I have trouble sleeping, I'm
in constant pain!" This prompted her to write a prescription for and
anti-depressant that she said would help me sleep better. I had asked
her about the option of physical therapy...another muffled scoff. After
pushing the prescription back across the table, I left her office and
never returned. I went home and cried frustrated tears wondering how a
doctor could be so ignorant and dismissive. I was in the prime of my
life and I couldn't find the strength to get out of bed to get to school
let alone try to pay attention and finish assignments through the brain
fog. I went untreated for the next three years and in a way became my
own doctor. I have tried everything from yoga to herbal supplements and
hadn't found a sufficient way of treatment.
I graduated from SUNY Broome Community College with a degree in
Communications and Media Arts with the support of my friends, family,
teachers, and classmates. In 2013 as my pain was only increasing, I
sustained an injury to my foot at work. I tore several ligaments in the
top of my foot and was put in a CAM Walker boot for six months. This was
a very difficult time for me and my Fibro because now i was lugging a
five pound boot around with me everywhere. I was constantly exhausted
and in unbearable pain. I ended up having to have surgery to remove a
bunion and to do exploratory surgery on my work-related injury. The
doctor found a Morton's Neuroma in my foot that had to be removed and
fixed my bunion. This meant up to a years worth of recovery for my poor
little foot. All throughout the recovery process, I was attending SUNY
Oneonta and was struggling the entire semester. My dorm room was on the second floor so the service elevator was was my
way up. I dreaded getting out of bed in the morning only to struggle
getting out of bed, hopping to the shower, getting dressed, and having
to lift the heavy elevator doors every time I wanted to leave my dorm. I
eventually rented a knee scooter which made it easier to be more mobile
but the extra amount of effort it took to get from Point A to Point B
was too much. As much as I tried to attend class and keep up with the
classwork, it didn't seem to make a difference. I was ultimately
Academically Dismissed from school for the next year. I wrote a letter
of appeal to the Academic Committee explaining the difficulties I had
experienced during that semester and again was denied re-admittance.
When I called the committee to receive a simple explanation, the women
told be that my medical excuse wasn't enough and that the only reason
they have the committee is for students going through chemotherapy or
other medical treatments and for students who had lost a parent during
the semester. It literally blew my mind that even with medical
documentation and a very well written appeal letter that it all wasn't
enough. This was probably one of the worst times I had experienced
during my journey with Fibromyalgia. I was extremely depressed and had
constant anxiety because of the situation I was in. It took a leap of
faith and the constant support of my friends, family, and my boyfriend
at the time. It's been a bumpy road since then but after attending the
Leaders Against Pain conference, I've found a place to put all of my
passion, anger, knowledge, and strength with a smile. I want to be a
lighthouse for all the ones in their own Fibro Boats. I am still
learning how to navigate through the crazy waves of treaments so it will
be a learning process and experience for everyone. I want young people
who have been diagnosed with Fibromyalgia and Chronic Pain to know that
you are so much more than that diagnosis.
There is life to live among
all the pain and it is SO WORTH LIVING!
To read more: Follow Caraline's Blog at http://thelivingtreefibroandchronicpain.blogspot.com/
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