I will, but I wanted to share some other very exciting news... I was chosen/asked to be featured in the Myasthenia Gravis Foundation of Illinois newsletter! I feel blessed to be able to share my story and recognized as someone who is an inspiration to others. I really cannot take credit. I send all of the glory up to God and praise Him for getting me through this! I thank Him for giving me the gift to write and to inspire; and if at any point I've done anything good intentionally or unintentionally for anyone, please thank God for I am only a vessel for Him to shine through.
The newsletter has not been posted to the MGF of IL site yet to link to so I am including below my write up. They titled it "If My Life Were a Building".
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29 years
ago I was brought into this world. My parents had high hopes for their very
healthy, active, little girl. Growing up with a type A personality, I had high
goals for myself as well. I had it all planned out, after graduating college
with honors I would travel the country as an event planner and eventually open
my own company.
If my
life were a building, just as it was getting built higher and higher, in 2008
story by story, the building started to be taken down. As the economy went
down, so did my company and the start of my career. The choice was made to move
to Texas which had a better economy, in 2009, but along with more jobs came
more allergies. Allergies turned into double pneumonia, twice, in 2010 and a
severe reaction to Levaquin making me temporarily unable to walk. Then started
a 2.5 year battle of trying to figure out why I couldn’t regain my health.
Each new
symptom brought a new prescription and each new prescription brought a new
symptom. Medication seemed to make me worse rather than better. Weakness,
fatigue, pain, trouble swallowing, trouble breathing, trouble seeing, trouble
digesting, feeling like I would faint, heart irregularities, brain fog... there
are too many symptoms to go through them all. More times than I could count I
was told it's "just anxiety." I decided, being overseen by a doctor,
that I would stop all medication and try things the natural way. I was improving...
until a serious infection that I didn't think I could beat in February 2012, in
which I was put on Bactrim double dose. Shortly after taking it, my body
started to shut down. As my breathing declined, the ability to walk was lost, I
felt I was speaking my last words and taking my last breaths. The ER sent me
home telling me to continue the medication saying it's "just
anxiety." If I listened I could have died, but instead I listened to my
body. I was soon after admitted by the doctor who prescribed it, but still told
it was just a reaction to the medication that would go away with time. After a
week in the hospital, I was then sent to a rehab hospital to learn how to walk
again. It never went away like they said, in fact it got worse.
Following
up with specialists as I was told to, my neurologist did seem to know what was
going on, two words I never heard before, so I kind of ignored them until the
test results would come in. July 11, 2012, the day I will never forget.
"You have Myasthenia Gravis... most people can live a fairly normal life
but you’ll have to take medication every day." Wait a minute, a
"fairly" normal life? Knock some more levels off that building I was
constructing. My body continued to negatively react to medications and initially
responded poorly to Mestinon. Unable to get in with the one MG specialist in
town, I was at a stand still. Then after a weekend in the hot, Texas sun in
October, I landed in the hospital again. This time they gave me IVIG and
Prednisone. I could not tolerate the side effects from Prednisone and begged
them every day to stop it; eventually I was weaned off. IVIG caused side
effects as well, and didn't seem to help. Again, I was promised I would improve
over time. After 6 weeks combined in a hospital and rehab hospital, I was
barely any better.
That is
when I decided I should probably get this thymectomy they talk of. Since
Chicago has more healthcare options and my parents could take care of me
through recovery, I opted to return to Chicago in January of this year. I again
faced the questioning of if it is "just anxiety". Eventually, I went
in for plasmapheresis in March of this year, which seemed to help, and days
later in April had a robotic thymectomy. Once again I had high hopes, but
another level of the building came down. My breathing was at it's worst and I
insisted something was wrong but told it was just the effects of surgery. After
being sent home, I returned to the ER to hear what I feared "You have a
pulmonary embolism." With multiple clots in both lungs, I thought my life
was over for a third time now.
Right
now I am finishing up treatment for my PE, and in the process I have been
diagnosed with something else called POTS- Postural Orthostatic Tachycardia
Syndrome. It is a type of dysautonomia which affects just about everything-
heart rate, blood pressure, digestion, respiratory, temperature, so on and so
forth. So now I have one illness that affects the voluntary parts of my body
and one that also affects involuntary. Many medications for POTS are on the “be
cautious with” list for MG. My treatment is pretty much at a standstill as my
body has become extremely sensitive to everything I put in it. I use a wheel
chair for anything more than a short walk and there are days I feel like a
prisoner in my own body. I have lost friends and even family members in the
mist of all of this. More levels removed from the building.
With all
that loss, it brings me down to the very bottom if my life were a building. By
everything I just said, you would think I'm a very negative person and there is
nowhere to go from here. However, oddly enough, right before my MG diagnosis, I
came to know God, and with Him I have gained so much more than all of my losses
combined. He transformed me into a positive person, and taught me to value
every level of that building that could so easily and quickly be taken away.
Though I am physically weak, I am spiritually strong. The building I was
constructing no longer stands, but I know God is helping me build a new one
now, a much better, taller, stronger one. My life is nothing like it used to
be, but rather than thinking of myself as disabled, I like to think of myself
as enabled…
My wheel
chair is an extension of myself and I feel blessed to have it so I can get out
including attending MG support groups and MG walks even if I can’t physically
walk. When my legs don’t work, I use my arms and my eyes to connect with others
over Facebook support groups or to write. When my arms and eyes don’t work
either, I rest, listen to music and pray, waiting for inspiration for the next
thing to write. In January, I started a blog with the purpose of one place family
and friends could go to stay informed while I’m in and out of the hospital.
Astonishingly, my blog took off, now having over 11,000 views, and I also
started a second one. I’ve always had a passion for writing but never had the
time. In addition, I design t-shirts and other items to bring awareness and any
profit I’ve made I’ve donated to the MG community. Now I can do what I love
while bringing awareness to a very rare disease. My new goal is to make
Myasthenia Gravis a household name… so that one day none of us ever have to
hear “but you look fine” or “it’s just anxiety” being sent home with our lives
at risk as we struggle to breathe. At the same time, I do hope remission is in
my future… and I will never forget what my neurologist told me when she first
diagnosed me… “Miracles do happen.”
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