Thank you to the person who contributed this story.
"I have always been an active woman. In my earlier years
before having children I was working 3 jobs. I learned my work ethic from my
Mom, Daddy and my Aunts. Roll up your sleeves, and you do what you need to do
to get the job done. I played as hard as I worked. I deserved it! I was often
the life of the party. I am a complete attention hog! LOL! Always laughing,
dancing, singing (off key of course) and over all having a great time. I
married, had my girls, and not too much really changed. I was still silly, loud
and loved to run and do things. The social butterfly. I LOVED playing the
hostess. Throwing get togethers for family and friends.
Then just over 3 yrs ago my life changed dramatically. I
began having blurry vision, and my hands would "lock" and I had
limited mobility of my fingers. Then it was my arms, suddenly I had difficulty
walking, like someone tied weights to my legs. I shuffled along like I was 89
not 39! Then I fell while trying to step off of a curb. There I was laying face
down in the middle of the street in downtown Cleveland without the strength to
pick myself up. I was terrified! You cannot imagine what was running through my
mind. Am I going to be paralyzed? What will my family do? My mind was spinning.
The next day I went to my PCP, he asked me literally on 3 questions and then
mentioned an auto immune disease called Myasthenia Gravis. "I believe this
is what you have Jennifer. We are going to run a few blood tests, MRI and get
you set up with a neurologist" My only thought was I have mya whata?
Again, my head began spinning.
I immediately began researching MG. Boy, what a joke that
turned out to be! There was very little information on the internet and what
was there is barely accurate. You see, MG is really not a disease that can be
"pegged" into little holes or boxes. I read that patients that suffer
from MG can live a "normal" life. Normal life. My normal? The life
that I had before began sick? The care free life I was used to? The one that I
could make plans with the people I care about and not worry about disappointing
them because I have to "flake" out on them? It is hard to play the
hostess when you never know if you have to cancel at the last minute on the
party due to a MG flare. I quickly learned that if I wanted to know about MG, I
needed to speak to those that experience the same things that I do. Find out
about as many different treatments as I could. I had to learn that if some
event was important to me I had to rest to "store" up enough energy
so that I could attend. I had to learn how to let others take care of me. I no
longer can do house work. I NEVER EVER thought I would complain about that, but
there it is. I would give anything to be able to do my own laundry again. I
learned that I use the energy that I have to accomplish as much as I can in the
time that I have that energy. Like making meals for my family and freezing them
all at once.
The most difficult thing for me during the journey is
redefining my idea of "normal". I am still working on that. I am
beginning to accept that some things are just out of my control. I remind
myself that those that love me do not judge me for not doing the things that I
could before. They are still disappointed, and sad, I can see that on their
faces. That is heartbreaking to me, but I hope to one day be able to forgive
myself for that heartbreak. I miss me. The one that danced all night, the last
to leave the club. The me that was up for any kind of nonsense. The spontaneous
Jen. The carefree Jen. She was fun. She was happy.
I did not write this as a way to have a pitty party or to
have everyone tell me it is ok. This is very cathartic writing this out. I also
hope to spread awareness and acceptance for those that suffer from any type of
invisible illness. I really hope that it gives each of you reading these words
pause to think of your definition of "NORMAL".
Thank you for reading.
Love and God's Blessings to you all!"
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