Living with MS isn’t easy anyone who tells you it is either
doesn’t have it or is kidding himself or herself. There are good days and bad
days it all depends on your own perspective of what a good day and what a bad
day is. With MS, you have to take life as a day-to-day process. You can’t plan
ahead and hope for the best, it doesn’t tend to work out well if you do. I
decided it was time to start a blog on how I cope with MS and hopefully it will
help others out there as well. Let me start at the beginning…
I was 31 at the time I was diagnosed with MS, was a full
time student working hard on my Interior Design bachelors degree in an online
setting. Anyone who says going to school online is easy is again fooling
everyone. You have to work twice as hard and learn a lot of things on your own.
I think this helps in all honesty. You will have a better understanding of the
programs you are working with and tend to find things that the professors
teaching the class haven’t even discussed doing. Ok, back on track, I had just
finished a hand-drafting project and felt exhausted, so I took a nap. When I
woke up, my right hand was completely numb. A bit panicked I called my mother,
she’s a nurse, and asked her what I should do. She told me to call the doctor
and make an appointment I might have pinched a nerve when I fell asleep.
So, I made an appointment for February 24th to
see my family doctor. The numbness
by then had manifested down the whole right side of my body as if a snake had
wrapped around my arm and leg. Parts weren’t as numb or affected at all. After some X-Rays, they found nothing. So she referred me on
to the Spine clinic to see if they could help me out. Two weeks passed until
the doctor could see me, at that point the numbness was more a nuisance. The doctor
did some typical tests, ran some spiky thing over my hand and checked to see if
there was any strength in it. Which I’ll be honest, I was lucky if I could hold
anything at all with my right hand, (thankfully I am a lefty for most
things). He decided then that we should do an MRI to see what exactly was going
on. I said, “OK, might as well”. I’m not a huge fan of being squished inside a
machine with lots of loud noises, but I knew it was something that had to be
done. After an hour or so, they decided to do some contrasting to see if they
could spot something. I know they had, because an hour had already passed and
they didn’t want to alarm me, but I knew something wasn’t right. After another two hours in the machine,
they finally pulled me out and let me get my clothes back on. The doctor and I
went back to his office to talk about the possible diagnosis. He had found some
spots that made him a bit uncomfortable on my brain and at C5. He suspected it
to be MS, and had already called a neurologist and made an appointment with him
before they had me out of the MRI. The doctor told me how hard it was to get
into a neurologist, it usually took months to get in, but he pulled some
strings and got me in there in a few days time.
I thanked him profusely and walked out of his office, a bit
numb and confused. Not, about what he had told me but HOW I got MS exactly.
Walking into the lobby with my MRI disk in hand and looking at my husband and
mom as I walked out I felt like a zombie. This couldn’t be real it was just a
bad dream and I would wake up and laugh at myself later on. But, it wasn’t it
was real. I had no idea if it was MS brain cancer had already taken the lives
of two people in my family on my dad’s side. So, his mind instantly went to the
worst. We had no idea what those spots were at the time. I started to do some
research on MS when I got home and I ended up crying by the end of the night. I
was scared, I didn’t know if I was going to ever get feeling back in my hand
again, if I was ever going to be able to bowl again. The next morning I had
called my school advisor and told her what was going on. She had suggested I
take the term off, figure out what was wrong then I could come back in a better
frame of mind. I agreed with her, got the paperwork together and sent it in. At
least that was one less thing I had to stress about.
The night before my appointment with my neurologist, I
couldn’t sleep, a lot of what if’s played in my mind. I finally had enough,
pulled out a book to try and calm myself down and fell asleep. In the morning,
I went over my paperwork for the doctor for the fifth or sixth time, (I kind of
lost count) to make sure I had everything filled in properly and stuffed it
back into the envelope. I had dreaded this appointment but at the same time it
would be a relief to know what was wrong with me. I showed up 30 minutes early
to my appointment, handed in all my paperwork and my disk in case he needed a
copy of it as well. The wait in
the waiting room felt like an eternity when actually it was about 5 minutes
before they called me back. They took my weight, blood pressure and
temperature. When the technician asked why I was there to see the doctor, the
fear worked its way back in. I told him about the numbness, the loss of balance
and the fatigue. He notated it all on the file then said the doctor would be in
to see me in a few minutes and left. I sat in that room and looked around at
the posters and wondered what was in store for me, how I was going to react to
all of this.
Then the doctor walked in. He’s quite a bit taller than me
and I stood up and shook his hand quiet awkwardly I might add since my right
hand is numb. He introduced himself, and then went to work. He had me squeeze
his thumb, and then did a few other tests. I’ll admit even now doing the heel
to toe walk is difficult, too impossible. I stumbled a bit like a drunk through
it but I gave it my best. After we were done, I sat down and waited to hear his
news, he confirmed, I have MS. We went over the MRI and he pointed out the one
at C5, he was concerned about this one since it was so low, and said that there
were many medicine options out there for me to use. He told me about the A, B,
C’s of the medicines, and I opted for Copaxone. Yes, I have to poke myself
daily and there are really no side effects minus the omg pain at the injection
site for ten minutes but that’s tolerable. He also told me I have RRMS, which
is remitting relapse MS. He said this was the best one to have, if I had to
have any. He also suggested I have the solu-medrol treatment. That treatment is
a three day, one hour IV transfusion. It would help with my exacerbations and
hopefully return the feeling into my right hand.
I got my first treatment that day, and then had two more
over the next two days. I won’t kid you, this stuff made me feel like superman
on speed. I got so much stuff done, even with a numb thumb. The feeling did
come back in my hand a few weeks later and I was ecstatic. I could switch back
to my normal bowling equipment and bowl like I used to. My life changed on
March 19,2009 that is the day I found out I had MS.
I’m writing this blog to not only document the good days,
but also the bad and try to cope with my own feelings with dealing with this
disease. There is no cure for MS, yet, only preventative measures and drugs to
help lessen the effects of relapses and even keep them at bay. Since I was
diagnosed I’ve had three relapses in a span of three years. That’s honestly not
too bad. I didn’t have any in 2012, which to me is a huge milestone. I got hit
pretty hard this winter, I had a relapse in March, and honestly I think I’m
either still recovering or it’s not going away, but I’m going to fight it one
way or another. I might have MS, but it doesn’t have me.
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