And the story
gets even longer… sorry to have such a ridiculously long post (didn’t realize
how long it would take to explain), but I hope I convey the entire story in a
way that’s easy to understand (and hopefully not too boring). I am OVERWHELMED
by the support I have received in the last 24+ hours after posting the first
part of the story. I can’t thank you all enough for reading and commenting, and
your comments truly made my day. In fact, they made me cry reading them first
thing this morning. I am so appreciative to have you all in my life!
With all of
the tension in my neck and shoulder (due to the fibrotic muscles, not just
regular stress tension), I was having so many tension headaches that would
radiate to my forehead and turn into migraines. As far as my doctors knew,
there was a distinction between the two: headache or migraine. However, at that
time, and still currently, I believe, they were doing research on how tension
headaches and other headaches can escalate into migraines, still with the
traditional symptoms like I experienced: an “aura;” nausea; vomiting;
sensitivity to light, sound, heat; etc. I was even able to take a class on it
during school at MSU. That’s exactly how it was for me. They would start
as just a headache in the back of my head (but eventually, that headache was
constantly there) and become a full-blown migraine quite often. Anyway, these
migraines would rule my life just as much or more than the pain did. I had
always had the tension headaches (at least since the injury), but I hadn’t ever
had a problem with migraines, though obviously my system was susceptible to
them. I couldn’t handle it. It kept me from ever reading books for fun, from
doing school work, watching TV. I spent so many days in my room with the lights
off, an ice pack on my forehead, heat pack under my head (back of my neck), and
a towel covering my eyes from any light that got through. No sound, no talking,
and if I was up and around, I was a grumpy person. Trust me. My family and
people close to me could account that those were the times I was not pleasant
to be around (though I know I still have my days.. :)).
I ended up in
the ER several times with those migraines, and of course, with the pain
sometimes, too. They would always give me pain medication, and if you’ve
studied what pain medication does, it can make migraines even worse through
restricted blood flow. Sometimes they were so quick to hand out those when what
I really needed was something to just make the pain in my head go away, but
understandably, they thought that the less pain in my neck and back, the more
the migraine would lessen. Makes sense, right? Except, by that time, I was
dealing with two separate issues that had just stemmed from the same original
cause. Of course, there were other times when the ER physicians thought I was
pain-drug seeking. I would always be offended, but I understood where they were
coming from because there are so many that would jump from ER to ER just
looking for pain medication handouts. I just was not one of them. The
last thing I wanted was to be on pain medicine. I didn’t have a choice if I
stood a chance of even making it to doctors’ appointments or even getting up in
the morning. Or sleeping a wink at night. It was the only thing helping even a
bit, aside from PT exercises and massage.
One of the ER
visits ended up landing me in the hospital. My pain management physician
decided that he was going to try a few different medications to ease the
migraine, but it was going to be over several days through infusion treatments.
It helped, but it caused such extreme nausea that they decided to call it an
allergy because I couldn’t handle anything in my stomach due to the medicine.
It didn’t take long, and I ended up back in the hospital with another migraine.
This time, he tried a drug that is known as an anti-seizure medication to see
if the principle behind the medicine would help for my migraine. We were going
to try anything at this point. All I remember from that visit is starting the
infusion, and the next thing I knew, I woke up to find my mom at my bedside
halfway sleeping, and when I woke her up fully, she started bawling. My dad was
in the bed on the other side. I didn’t know what had happened until my mom told
me I had been unconscious for three days, in a medical hepatic coma.
Apparently, the last medication that they had tried had caused my liver enzymes
to escalate into an acute liver failure state, and I hadn’t been conscious
since they had given me the second dose of it. I apparently even talked and
joked to my physician and mom as I was going into the coma, but I didn’t
remember any of it. I still don’t. I was slowly leaving any awakened state.
Thank God
that experience turned out ok. My liver enzymes bounced back to a normal range,
but it was as if I had a stroke. The right side of my body and some of the left
was incredibly weak. I had to do physical therapy for a few days in the
hospital to relearn how to walk, eat, etc., but it didn’t take long to build it
back up thankfully.
Unfortunately,
as soon as we were able to get out of the hospital and back home (where we were
met with a “Welcome Back” sign and outpourings of love and support from amazing
friends and people in the community), I started having more weird symptoms. My
legs and arms were constantly shaking and twitching. I couldn’t sit still. I
had goosebumps over my entire body, but I didn’t feel cold. I was constantly
sweating. I had an irregular heartbeat. I remember crying when my mom said we
had to go back to the hospital and pleading with her to stay. I couldn’t stand
the thought of being admitted again and facing a potentially life-threatening
condition like I had before. I thought I could handle the symptoms more than
the thought of dying in that hospital room. But, as soon as I was admitted, we
learned that I had a potentially life-threatening condition called Serotonin
Syndrome that was caused by the combination of drugs together interacting
causing too much serotonin in the body. Several of the medications that I had
been given in the hospital from migraine treatments and anti-seizure
medications to nausea medicines had interacted to cause this horrible thing,
and if my family hadn’t have taken me back to the hospital, I could have died.
Those two or three weeks were some of the scariest weeks of my life.
Things
started getting back to normal, and we just kept on looking for more answers. I
couldn’t learn to drive at the normal age because of the medications I was on
and the risk of an intense muscle spasm causing me to go off the road. But,
after time, my physicians knew it was important for me to learn to drive, so I
could take myself to physical therapy or school, and they helped me with a plan of
what medications I could omit or take less of if I was having a better day. I finally got my license at the age of 18. I didn’t drive much, but it was a
huge step for me to be able to have some freedom. All my friends had been
driving for two years already, and though they were able to drive me around if
we went out, I couldn’t go out with them much either, and I wasn’t at school
full time, so this was my way to be able to be a little independent and be away
from home for an hour or two. It was just for appointments, but it was something.
After a few
more surgeries (and countless MRIs, CTs, X-rays, myelograms, lumbar punctures,
injections, steroids, medicines, you name it, I’ve had it kinda thing), I
finally had enough. It was nearing the middle of my senior year, and things
hadn’t changed in respect to my overall condition. In fact, I had
scarier experiences trying to fix the main issue, and all of the surgeries
were life-risking. I was pretty adamant that I didn’t want any more treatment
or to see any other physicians. I had tried seeing a chiropractor, acupuncture,
hypnosis, relaxation techniques, talking with a pain psychologist, surgery,
support groups, massage, physical therapy, occupational therapy, trigger point
injections, botox injections, epidural injections, TENS unit, and on and on. In
my opinion, I had tried everything. And I was also adamant that I was going to
college away. So I interviewed for scholarships and I attended open-houses, and
I applied for pre-admit medical school programs. I had done well enough in high
school, even through everything, that I could still get into where I wanted to
go. It was scary for my parents, I’m sure, to think about me going off to
college, but I knew it was what I needed to do.
I graduated
with the rest of my class at West Plains High School, Class of 2006. That
accomplishment may not mean that much to some people, but to me, it meant the
world. I didn’t ever know if I would make it to that point. I left to start
college at Rockhurst University the following August. I LOVED it there. I met
some of the best friends I could ever dream to have. I started getting
involved, and right away, I was doing very well in my classes. But it was so
hard. I would cry myself to sleep at night knowing that there were some days I
couldn’t get out of bed and wondering if the next day would be one of them. Or
wondering if I was going to be able to do ok on a test since I may have a
muscle spasm in the middle that escalated the pain. It just wasn’t working. If
I hadn’t been so stubborn, I would have waited a while before going off to
college. But I was indeed stubborn, and that caused me to have to leave
half-way through the semester, a semester I was doing well in, but I just
couldn’t handle the pain.
I came home
and went back to living with my parents for a few months. I started helping out
at the elementary school that I had gone to, and I loved it. I couldn’t do
much, but it helped me get out. I took a couple online classes from Mizzou, and
at least those helped me feel like I was making some progress. And I kept in
touch with friends, which was amazing. But it made me determined to go back the
next semester.
I had started
seeing a new pain management physician in Kansas City since I was going to
school there, and he suggested trying to implant a neurostimulator that works
to send electrical signals to the brain and intercept the pain signals that you
would normally feel. You do a trial first to see if it is something that will
work for you. I tried a spinal cord neurostimulator first, but it did not help
the pain. The peripheral neurostimulator, however, was incredible. I
immediately felt relief from my migraines and tension headaches. They tried it
for my arm and neck pain, as well, but unfortunately, that wasn’t beneficial.
The lessened pain from the migraines, though, made it extremely worthwhile, and
I felt as if I could finally go back to school again.
I enjoyed
college. I had some definite hard times with taking exams and keeping up with
classwork because I was still dealing with pain, but I consider myself very
blessed to have had the chance to go and complete so much of my degree at
Rockhurst. I met amazing people, and I had the chance to be away from home, to
learn more about myself and be out on my own, which means the world to me.
During my sophomore year, I had yet another surgery, but it seemed to help the
arm numbness and weakness some. It was a long thoracic nerve decompression, and
though it meant again having to start back at square one with strength, after
time, I felt like the neuropathic pain improved a bit. And I was grateful for
any improvement.
|
With my doctor before my surgery sophomore year of college. My best friend took photos of me looking like an alien. |
During my
junior year of college at RU, I was prescribed a medication similar to one I
was given during my time in high school when I was in the hospital. I was doing
okay, but it’s always been hard for me to deal with the fact that I am limited in
how much I can do before I reach a point of too much pain and can’t catch back
up to a normal life. So, my physician prescribed me an anti-depressant, and it was
something that I had been on before just to help with the anxiety that I felt.
I worried constantly about my pain and school and about my family, who has
medical issues of their own (my mom and sister are both in chronic pain with
different medical conditions—they are the ones I look up to). However, there
were several drugs in that family and the anti-epileptic family that I seemed
to be allergic, too. Not much time after I was prescribed this medicine, I
started feeling dizzy and passing out randomly. At first, it only happened
every couple of days. Then, it started happening more than once a day. In fact,
I would go to class and all the sudden, I would wake up and realize that I missed
a significant portion of it. I know my professors were worried. After a blood
test, we learned that my liver enzymes were elevated, and several blood tests
indicated that they were remaining elevated, indicating chronic liver hepatitis,
or inflammation of the liver. My body couldn’t take it, so I would pass out.
After several stays in the hospital and my mother making countless trips to KC
to be with me (as well as my best friend taking and staying with me in the
hospital—I have the best support system!), we also found out that I had a heart
condition called POTS, Post-Orthostatic Tachycardia Syndrome, which meant that
when I stood up or changed positions, my heart rate would speed up rapidly, and
it would cause me to pass out. My physicians hypothesized that it had developed
due to the stress on my body, probably from the liver toxicity, but it was what
caused my body to actually faint and lose consciousness so many times. By figuring
that out, though, I could start taking a beta-blocker (yes, I know, more medicine,
ugh) that would regulate my heart beat and stop these spells.
It was a
scary time. The passing out spells got better, but they would still happen from
time to time even after I started taking the beta-blockers. My roommates were
supportive, especially my best friend, but they became worried when I said I
had hepatitis, not understanding that means inflammation of the liver. They
assumed I had something that could be spread to them, and instead of talking to
me about it, they went to the Dean of Students at the university. I was very
upset at the time, but now, I understand that they were just scared and saw
what I was going through, knowing how difficult it was for me. However, with it
being a small, private school, they forced me to leave as I was a liability to
the university. I had passed out during an exam at the learning center, and the
librarian had seen the whole thing. They were scared, and they didn’t want
other students to be scared by my medical illness. I wasn’t able to always do
school as well as I wanted to, taking tests late and handing in assignments
later than due, and that added to their decision. But, I was doing the best I
could. I still, to this day, see the act as discrimination, especially since I
wanted so much to finish my degree there. But, I wasn’t able to. When my
friends walked at graduation, I was sick and lying in bed. Shortly after, I
left Rockhurst and applied to Missouri State University, where I continued my
education. It was nice to be much closer to family, and it helped turn things around
for me.
|
I lost so much weight after being so sick. |
As I worked
toward finishing my education, I also started working. I was finally doing so much
better—not passing out anymore (the spells had gotten farther and farther
between and finally stopped with the medicine), the headaches were managed, the
neuropathic arm pain was manageable. The pain in my neck and shoulder still
made it incredibly difficult at times, but I pushed through. I just wanted to
be normal. I didn’t want to risk what happened at Rockhurst happen to me again
at MSU, though they were astounded by how I was forced out there. I wanted to
be a normal student as best as possible, and I finally was able to just push
through and get assignments done. I did whatever I could to have my life be as
steady as possible. I went through some really hard times, even after I was located
closer to my family, and I started talking to a psychologist again. I’m
grateful for that because she helped me with some relaxation techniques that
truly helped me take a break, regroup, and then start again. Around this time,
I met Randy, and with him, I felt like I could live normally and work towards
my dreams. In fact, he made my dreams come true. He supported me in doing
whatever to help my pain and also live a normal life and work towards a
fulfilling career. He made sure to be there for me always, driving me to
doctors’ appointments in Kansas City. My life was actually an enjoyable life. I
was happy.
I had a
dream-come-true wedding day. I had a job I loved in research. I volunteered. I
enjoyed life. I’m not saying there weren’t many times I enjoyed life in the
former twelve years before this point, but I was also anxious and worried that
I wouldn’t be able to do something or another because of the pain. I wasn’t
worried about that anymore. I knew I was in a good place, and I knew I was
going to have to deal with the pain for the rest of my life. I knew other
physicians thought I had another underlying condition. It wasn’t going to stop
me from living my life.
Last Friday,
I had an amazing appointment with a new pain management team here. They were
instantly able to understand why I was in pain and know that it all was
connected. They didn’t question anything. They listened, and when the physical therapist
(that works with the physician) was touching my muscles, she named 12 muscles
that she could work on to help the myofacial pain. My muscles are ridiculously
tight, and she acknowledged that right away since that is where the majority of
the pain comes from. “You could bounce a quarter off her trapezius muscles,”
was one thing she said. They talked about an entirely new concept, and they are
going to introduce their plan to help me this Friday during our next
appointment. I have hope that they might be able to lessen the pain overall. I
told them how much I want to get off all my medications, and they told me that
I will have to be patient, but they would help me in whatever way they could. They
were so encouraging. But either way, I’m happy where I am, and I will get off
pain medications one way or another in order to hopefully be able to have a
family one day. I just hope there won’t be any need for them after their
treatment. :)
I have had so
much support through the past years. I am incredibly grateful and don’t know
how to thank those people that have been there for me so much enough. My parents
spent so much money and time and energy to help me find the best answers
possible. They spent countless days and nights worrying and struggling to find
solutions for me. They took off from work and other commitments to make sure to
be right by my side, and for that, I will never be able to find a way to say
thank you enough. My siblings were there for me the
entire time. They kept me company, endured so many people asking about me, and were
a constant support system. They lost out on so many opportunities to do fun
things and enjoy family time because I couldn’t handle being out of bed, or the
time and money went to medical procedures or tests for me. They never gave up
on me, and we are so close. I will always be grateful. My best friend in
college went with me to so many doctors’ appointments, stayed with me over
night in the hospital, went with me to surgeries. I went through a really hard
time after the second time my liver had issues, and I made some decisions that
I’m not proud of and couldn’t let go of some things. Because of this, we’re not
close anymore, but I will always, always be grateful for everything she did. And
my best friend today, who has been my best friend since I was in 5th
grade, has been there through everything, always lending me a shoulder to cry
on or an ear to vent to. She’s always listening to me, and she is the most
supportive, loving friend I could ever ask for. There are so many others that have been constantly giving
and loving, as well, including the entire community in my home town, previous
towns I’ve lived in, my church, my college family, and so many. I am so
blessed! And now, the man that completely changed my life is the absolute most
understanding man and is there for every appointment, listens to every grievance
and vent session, and does whatever he can to make sure I’m ok. I’m so
incredibly lucky to have him, and he makes every day better, even the really
hard ones.
I know it’s
such a long story, but if one person hears my story and knows they’re not going
through it alone, it’s all worth it. I want people that are patients to know
that even though a doctor may tell them they think it’s in their head, they
have to advocate for themselves. Whether it be a heart condition, chronic pain,
headaches, leg pain, etc., it’s real! And there are ways to help. Don’t start
to believe it yourself. I know after so many times of hearing it and having people
tell those close to me, I started to believe it of myself. But you’re your biggest
supporter. Know there are others that have gone through it, too, and will be
there to help. People raise support about many illnesses (as they should), but
chronic pain never seems to be one of them. It’s a true illness. It almost always stems from another illness (or injury), but it is physically, mentally, and
emotionally exhausting. There is research being done to help patients with
chronic pain (more about that later), but until people are more aware that it
exists, there will never be an answer for all the issues that lead to chronic
pain. We have to fight to make sure they never stop looking for answers. And we
have to support each other.
Thank you so
much for taking the time to read my story. If you know of anyone that could be
helped or not feel so alone by this testimony, please feel free to share. And
if you’re experiencing any type of medical condition, know that you have people
that love you and will do whatever to help.