Some of you may know me, and some may not. Everyone calls me Lex, or
some variation there of. I am a 31 year-old, proud mother of Isabelle. I grew up in New England, and went to college at UMass.
Soon there after, I moved to Philadelphia. I was working as a crisis counselor, and part time as an EMT. It was there that
I started to notice something was not quite right. I found that I was having trouble opening my hand, either to let go of
something, or someone (most embarrassing trying to let go of someone's hand whom you just met). I asked a friend, he said
it sounded like "trigger finger". I said ok, and went about my business. It got progressively worse, and other symptoms
started to appear. A few years later, I moved back home to MA. I decided to not pursue an advanced education in psychology,
rather start in a new field that really interested me, the medical field. I came home and started working full time as an
EMT.
I decided to go to Paramedic school. It was then that my symptoms
worsened. I was going to school full time, and working full time, I started getting painful cramping throughout my arms, legs,
intercostal muscles, basically throughout my body. I knew it was time to see a doctor. The road to a diagnosis was unlike
most with my form of Muscular Dystrophy. I have a family history, so it was easy for me. Genetic testing proved my fears.
I had Myotonic Muscular Dystrophy Type 2. I went on some medications that helped slightly with some of the pain. What I refer
to as "getting stuck" otherwise known as myotonia, has increased over the years. You would still never know it looking
at me though. I came to a turning point. The point where projects like these are born. I became pregnant. Unfortunately
to my husband and my dismay, my symptoms took a rapid turn for the worse. Bless Doug for all he had to do for me.
I could no longer walk with out help, getting up from
a chair, or trying to walk up to my second floor was eventful. I wore a "belly bra" because if I stood too long,
the frequency of contractions increased because my abdominal muscles were too weak. Then at 27 weeks gestation. I fell. My
legs "got stuck" while walking, and I did a belly flop. I ended up in the hospital and they found a small abruption.
Luckily, it healed on its own, but my doctor finally requested I get a walker. In the end, my daughter was born full
term healthy and happy. We decided not to have her genetically tested because neither of us feel it necessary to label her
with something where she may not have symptoms until later in life. We are hoping with all of our efforts that a cure
or treatment will be available if the time comes when Isabelle is displaying symptoms.
In all, I look at my pregnancy as a way to put everything in perspective. I am
almost back to where I was pre-pregnancy. And although I am weaker for myself, I am still stronger than the average female.
So it is time to take advantage of it.
No
one knows the prognosis of this disease. I try not to guess. But I certainly won't give up with out a fight.
Thanks for reading.
