Wow! It has been an amazing couple of weeks. I really would like to thank the Simon Say Stamp Monday Challenge Design Team (especially Anna-Karin for her lovely comments ) for the Spotlight on my Chiari Canvas. I would also like to say thanks to those who pinned the Chiari Canvas on Pinterest. All of you have helped me get this message out and raise awareness about the sometimes hidden and often debilitating condition known as Chiari Malformation.
My tag today celebrates what I'm feeling. For years, I battled an unnamed and virtually invisible illness. Often I felt very alone. This month, my art has given me an avenue to reach out to others who have lived this Chiari life and to those who have never heard of such an illness. I love this Tim Holtz stamp "in dreams we catch glimpses of life larger than our own". That has been what the last couple of weeks have been for me.
If you take a look at the entire tag, you will see evidence of my Chiari life. I was trying to use some of my alphabet stamps and my placement got a little wobbily. I was pretty tired last night but I was determined to get this tag done. I was too tired to redo it or find a fix, so I'm sort of stuck with the wonky words ;) The tag's background was made with my favorite color of Distress Stain, Seedless Preserves, purple Perfect Pearls from the Jewels set, and some Dylusions Ink Spray in Crushed Grape. I spritzed it with water and applied some heat. Love this color!! I added a couple of Tim's other stamps to frame out the background.
My awareness ribbon actually started out as a beautiful cream satin edged with gold. I used the Seedless Preserves Distress Stain and water to get that pale purple color The base on which my ribbon lies is a Tim Holtz grungeboard square. I stained it first with Seedless Preserves Distress Stain and dried it completely. Then I used a Perfect Medium pen to outline the swirls. I applied the same purple Perfect Pearls from the tags background to the swirls. That was heat set. Then using a small paint brush I applied Broken China Distress Stain over top of the Seedless Preserves to give it a darker, bluer tint. The ribbon was attached with Glossy Accents. I outlined it with Picket Fence and Black Soot Distress Markers.
I embellished the tag with black trim ribbon and a ring duo charm that emphasizes the hope that I have for my own health and for others out there with Chiari. It seems that each week physicians and researchers are making major advances in this area.
For those of you who are interested, I'm going to share a little more my person story with Chiari. If you would rather not listen to someone else's boring health problems, I'm not offended :) I hope to see you the next time I share more of my art.
So My Chiari Story Continues ...
Actually, it's the beginning of the story and the background of why I am so passionate about raising awareness for Chiari Malformation and its related illnesses.
Flashback – Fall 1995:
I vividly remember that headache.
I was a somewhat ambitious doctoral student at the
University of Georgia. I already
had plans for my dissertation and life was going well. It was the beginning of the term and I was heading from my office on the first floor to my seminar class
on the 6th floor. Other
than adult-onset asthma that I had acquired a couple of years earlier, I was in
fairly good shape at the time. I was late so ended up running up the stairs (faster than our building's elevator). By the time I reached the 6th floor, I had a
headache. It was on the left side
of my head and it pounded! I was
sure it would go away by the time I relaxed, so I went into class. I was wrong; it got worse.
I don’t remember much about that class except the pain and
trying to keep up with the discussion.
(A couple of days later, I recall telling my advisor that I hoped that I
didn’t make a fool of myself during that afternoon’s seminar. His only reply was “Well … at least you
didn’t dance on the table.” Ugh!) I definitely do remember getting back
down to my office. Lights were too
bright. Sounds were too loud. And every step made my head feel like
it was going to fall off. Over the
next couple of hours, I took four Advil and then a couple of Tylenol that I had
bummed off of someone in our department.
Nothing helped. I was not
able to drive myself home that evening and I was scared.
I still had a headache the next day and I went directly to
the University’s student medical clinic.
I got my first diagnosis of migraines. After that day, headaches became a way
of life for me. The rest of
that year was okay. I was getting
use to the headaches. I
lived by Excedrin Migraine. At the
beginning of summer 1996, I had completed all but one of my comprehensive exams
and was working out the details for the dissertation study I hoped to start in
the fall. In the meantime, I
managed to work as a volunteer for the 1996 Atlanta Olympic Games. It
was an amazing time, but I remember the headaches intensified during those few
weeks. I thought it was just the
pace I was living at during those days.
When the Olympics ended, I went back to UGA and started
working on my next comprehensive exam.
I felt exhausted. I was
sure that if I rested enough, I would get better. Within a week, I started running a low-grade fever, sore
throat, and had excruciating pain in several joints, especially my left
shoulder. Within a few more weeks,
I could barely get out of bed. We
were very concerned that I may have caught some bug during the Olympics.
It took six months of testing and a trip to a rheumatologist
to rule out everything from Lyme’s Disease to AIDS. The student medical clinic ran so many tests on me that they
began taking spare blood taps for future tests since my arms were beginning to
look like a Heroin addict’s arms from all the needle marks. The only thing that they could find
beyond the symptoms I was exhibiting was anemia.
By midterm, I returned to school. Pain would go from one joint to another: hips, knees, ankles, jaw, neck, ... no
joint was discriminated against.
The worst pain was in my shoulders, vertebrae, wrists and fingers. I couldn't even hold a pen to sign my own signaure some days. I also would have periods where I
would functionally black out. I
would leave my office building to walk to my car in the graduate student parking
lot; and the next thing I knew, I was on the other side of a four-lane street
and I was half way to my car. That
was extremely scary. By the end of
the six months and all the testing, I had a diagnosis of Chronic Fatigue
Syndrome.
I managed to graduate with my doctorate and I started
teaching at another university in Fall 1997. In
2000, I found a job closer to my family in North Carolina. I love teaching. My students are the reason why I get up
in the morning, especially when I'm fatigued and suffer with my symptoms. Fatigue is something different from just being tired. It’s like someone pulls a plug in the
bottom of your feet and all of your energy leaks out onto the ground. I would lie down to rest and then all
of the sudden my heart would start racing. Then there would be days when I would have vertigo and
nausea. My ribs would slip out of
alignment causing a great deal of pain.
There were violent bouts of irritable
bowel syndrome. I couldn’t hear
well out of my right ear. I had cognitive issues like not being
able to remember how to get to a friend’s house or a restaurant that I had been
to just recently. Symptoms would
come and go. I had a heart murmur
and then I didn’t. My eyes didn’t
track together and then they did. But
the headaches … they were my constant companions. And they got worse. One lasted for 21 days and another lasted
almost a month. These marathon headaches only stopped after large doses of
narcotics and muscle relaxers (sometimes multiple rounds) that would knock me
out.
Through it all, I never missed a day of work. I kept going. The one comment that many Chiari sufferers get from those around them is "but you don't look sick". Most of our symptoms leave no external signs. Some of my family, friends and colleagues wondered if it was all in my head. That hurts as much as the physical suffering.
I did change my primary care physician about five years
ago. The new doctor believed me
when I said that I felt like something else was wrong with me. My joint pain, fatigue, and headaches
were becoming almost unbearable. I wasn’t sure how much longer I could keep
functioning at my current level. After listening to my history, he was concerned that I might
have Myesthenia Gravis. So we
sought out a neurologist. The
neurologist was pretty sure I did not have MG, but he did diagnose me again
with classic migraines. When I
went back to my primary care physician, I asked him what was next to
explore. He said that was it. I asked him about the mind-numbing
fatigue and the myriad other nuisance symptoms I had. He gave me a hug and said, “Some people just have chronic
fatigue.”
Then one spring morning in 2010, I woke
up with a severe pain in my neck. My next new primary care physician thought
I had a ruptured disc and sent me for a neck MRI (CSPINE). That’s when life got very
interesting. The radiologist
confirmed the ruptured disc between C6 and C7 and … he also saw a Chiari I
Malformation approximately 5 mm long.
A summer of neck traction took care of the ruptured
disc. But it took a couple of
years to take care of the Chiari.
First of all, my neurologist told me, “That’s not a Chiari.” Evidently, according to his
experiences, I just had slightly herniated cerebellar tonsils. And, since I didn’t have a Chiari, it
was highly unlikely that the herniation could be playing a role in my
headaches. He did tell me that I
did not exhibit the classic Chiari headache pattern. That was true. I later found out that my Chiari was asymmetric (longer on the left side than the right) and that was why my headaches seemed more like left-sided migraines than Chiari headaches. Anyway, we didn't know that at the time so we forgot about the Chiari Malformation note on the
radiology report and continued to try to find something that would help me
reduce the frequency of my "migraines".
I was seeing my neurologist every three months to discuss the results of
the latest prescription or strategy and then discussing what to do next. Because I really did not have migraines, migraine medications would create bizarre side effects. That was difficult to deal with as well.
By Fall 2010, I was suffering with headaches on a daily
basis. I developed new symptoms: reactive hypoglycemia, occipital nerve pain that burned the base of my skull, pins and needles in my hands, and something that I call a “brain zap” or “zing”. This weird "zing" is like having an electric current
running through my head. It feels like sticking your finger in a live light socket. Sometimes
it runs just through my head. Sometimes it runs through my head and
then down to the tip of my fingers.
Then came one of the most pivotal moments of my illness. I
had a headache that was so painful, I honestly was aware of nothing else around
me. I was going to see my niece in
an end-of-summer-drama-camp production. We were waiting outside the building for
the doors to open on a Friday evening.
I felt nauseated and the pain in my head just continued to build. I took multiple Excedrin Migraine, but
it didn’t touch the pain. I sat
down on a bench while everyone else went to get my niece some flowers for her
performance. Anything could have
happened to me that evening while I sat there and I would not have even
registered it. I could have been
kidnapped, mugged, etc, and I would have been helpless to do anything about
it. All I was aware of was the
pain. I couldn't keep going like this. I would lose my job and any quality of life that I had.
I called and made an emergency appointment with my
neurologist as soon the office opened.
He said that we had done exhausted treatment options. He recommended that I see a
neurosurgeon to see if the escalating headaches had anything to do with the
ruptured disc in my neck. In
August, I saw a neurosurgeon in the area. After an hour of neurological testing (in which I was very
surprised to find out that I had decreased sensation in my left arm and the
left side of my face), the doctor asked me into his office. He pointed to an image on my brain MRI
and asked me if I had ever heard of a Chiari Malformation. I just kind of laughed and said that I
had. The neurosurgeon went on to
say that he was fairly sure that my headaches were being caused by the Chiari
and that I would probably benefit from decompression surgery. He went on to explain that he would
remove some bone for the base of my skull and the top vertebrae to make room
for the cerebellum tonsils to move back up into my skull and give room for cerebral
spinal fluid to flow. I was
dumb-founded. I told the surgeon
that I wanted to think about it for a little while before I made any decisions.
After discussing the results of this visit with my
neurologist, we decided to go for a second opinion. An appointment was set up with a neurosurgeon at one of the best hospitals in our state. Before I could go
to that appointment, I started losing feeling in my right arm and hand. I also had some bizarre involuntary
movements in my left wrist. I was
given an emergency appointment with the hospital's neurosurgeon on call
that day. After giving me less
than five minutes to discuss my symptoms and briefly looking at my MRI’s he
told me that I most likely had carpal tunnel in my wrists. I asked how the carpal tunnel could
impact my headaches. He then said,
“Oh those are probably tension headaches.
You are stressed, aren’t you?”
I was furious. I know what
tension headaches are and there was no way that my horrible headaches were
tension headaches. I went
out into my car and cried.
I returned to work that afternoon and told one of my
colleagues, who incidentally does have carpal tunnel, that there was nothing
wrong with me. I was just going to
shut up and be healthy … even if it killed me. My family could find out what was actually wrong with me
when they did the autopsy. This
colleague (and very good friend) told me that I had 24 hours to “be healthy”
and not think about my health issues.
But after that, I either had to continue my search for a doctor who
could help me find out what was wrong or she was going to kick me in the backside. I will forever be grateful to her for
that.
Twenty-four hours later, I realized that even if I went to
every neurosurgeon in NC, I would probably end up with the dichotomy of
opinions like before. There seems
to be very few doctors who really have a deep understanding of Chiari
Malformations. So, I decided to
find someone who specialized in Chiari.
I spent a few days searching the Internet. From what I have read, there are great surgeons out
there, but it seemed that The Chiari Institute had an entire staff of
professionals who could look at my case from a variety of viewpoints and Dr.
Bolognese seemed to be one of the best Chiari specialists in the country. I filled out all of the questionnaires
and immediately faxed them to TCI.
When I received an email that my case would be look at by the interdisciplinary
group at TCI, I felt like I had won the lottery. It wasn’t long until I was invited to meet with Dr
Bolognese. I breathed again.
Sorry for the long story, but sixteen years is a long time to suffer and have people think you are an attention-seeking lunatic:) I'll continue this story later in the month. I tell it because I want to help people understand this odd illness and hopefully encourage others to keep looking for answers. They are out there ... even when you really don't believe so yourself.
Thanks for listening. -- Mary Elizabeth
