|
|
November 30, 2008 --
When Linda Desaulniers' sister was affected by Chiari, Linda decided to get
involved. On January 11th, 2009 she plans on raising awareness and
money by running in the 2009 Disney Marathon.
According to Linda, "It will be 6 years in January since I ran a full
Marathon, but this race is like no other. This race has a purpose -- one
purpose, and that is to raise awareness for Chiari Malformation. My sister,
Kate’s story is below."
**To donate in honor of Linda and Kate, simply use our secure system to
Donate On-line, and put Disney
Marathon in the Message Box.**
Kate's Story
“Today will be better than yesterday, and tomorrow will be better than
today.” I found this statement on a support group website a year ago after
being diagnosed with Chiari Malformation and Syringomyelia. About ten years
or so ago, I noticed my thumbs not moving the same way. I passed it off as a
side effect of my many years in color guard. Over the following years, my
hands got progressively worse. It was to the point where my muscles were
deteriorating so badly I was losing my grip. My Doctor sent me for x-rays
and found nothing with the bone so she decided to send me to a
rheumatologist to check for arthritis. The test came back negative. I
ignored it for another year and a half or so. After the encouragement and
compassion of a friend, I was able to find the inner strength to do
something about it. I don’t know where I would have been without the support
of my family and friends through all this.
While some of the symptoms occurred throughout my adult life, I didn’t put
two and two together until after I learned more about CM & SM. Along with
weakness in my hands and arms, I also experienced tingling in my fingers,
the sensation of being choked, and sensitivity to light never knowing these
were all symptoms of CM and SM. I still remember telling my doctor about my
throat and we both wrote it off as allergies.
The stress of the unknown consumed me and those that loved me. The questions
of what were these conditions and how did I end up with them and whether or
not I was going to be disabled continued in my thoughts. I wondered what
would become of me being single, I thought “who would be able to accept me
and love me over all this.”
Shortly after being diagnosed, I went to Miami to meet with a Neurologist
who told me I had to have brain surgery (decompression surgery). I was in
shock, and time just stood still at that point. I met with my surgeon that
same day. He explained the whole procedure and put me on his schedule two
weeks out.
My muscles were weakening rapidly in my arms, shoulders and back during
those two weeks and I cried consistently and prayed that I could have the
strength to make it until my surgery. I worked from home off and on those
two weeks before my surgery. Everything was dependant on how I felt each
morning and whether I had the strength to raise my arms above my head to dry
my hair, or even having the strength to hold my hands above my keyboard to
type. I would type with my left hand while holding it up with my right hand
or I would place a rolled up towel in the front of my keyboard to rest my
wrists on. I was so weak and so scared. But finally, my surgery day arrived.
Everything happened so fast. Before I knew it I was being asked to raise my
arms above my head. I felt so drowsy and asked if I was going into surgery.
My anesthesiologist said no, that actually my surgery was over and I had
done very well.
After coming out of the surgery, oddly enough, I had no pain. I remember
every day how excited I was to regain a bit more of my independence back.
The day my family came in and saw me sitting up in a chair and then later
that afternoon walking around the hospital floor, they were so relieved that
I was on the road to recovery. I was in the hospital for a week and stayed
in Miami an additional week so I could follow up with my surgeon. I was back
to work within a month, part time.
I hear so many stories about others who suffer with this condition/s and how
they have had multiple surgeries, suffer from migraine headaches, severe
pain in their backs and many other symptoms that I never had. Many are
unable to work and are on disability. I often think about my situation in
comparison to theirs and think how fortunate I am. I am still able to work,
and I am able to take care of myself. I haven’t lost any of my independence.
I feel guilty at times when I hear of someone else with this condition that
struggles with pain, or is struggling to find a surgeon who will do the
surgery, at best…One who KNOWS what this condition is and does the surgery
correctly the first time.
I had an appointment recently with my regular doctor and brought her a gift.
I brought her the book “Contents Under Pressure” one mans journey with
Chiari. I read it and highlighted everything that I experienced before and
after my surgery. She and I had a conversation a year ago after my
diagnosis. She mentioned that doctors don’t often have cases like mine and
when they do, it’s like they are learning from us. When I gave her the book,
and we spoke briefly about some of my symptoms, that we didn’t know were
symptoms until after my surgery. She was very grateful and couldn’t wait to
read it. I hope by me giving her the book that maybe it will benefit someone
else by getting them the help they need because she is more aware of the
condition.
It’s been a year since my surgery. I’m told it was a success and I won’t
need any additional surgeries. I’m left with weakness in my hands but I am
still able to function with them. I occasionally wonder if this will someday
resurface again in my life, but then I think of a quote that I heard that I
will carry with me always….
”Don’t let tomorrow rob you of today”…Every day is a gift.
--Kate
“Be kind for others you meet may be fighting a harder battle”
Return To Table Of Contents
|