Category Archives: Multiple Sclerosis

A Matter of Perspective

Rights vs. Privileges.  These are always argued, right?  What is a right, what is a privilege?  Is having a roof over my head a right or a privilege I have?  Is having delicious food to eat something I’m entitled to as a human being, or should I just be happy that I’m well fed?

Being a spoiled American, growing up in fairly affluent areas, I tend to think that I’m entitled to a lot of things.

I think that’s why it’s been so hard for me to deal with MS.  Before this, it was my right to do whatever I wanted, go wherever I wanted.  Because of MS, it’s no longer my right to drive to work every morning when I wake up — it’s now my privilege to work from home.   It’s not longer my right to drive to the store to buy a pair of shoes — it’s now my privilege to be driven there.  It’s no longer my right to feel normal — it’s now my privilege to have a day with minimal dizziness and fatigue.

Sure, I should be happy.  I should be grateful that the MS was found before I started to lose my vision… Thankful, that I’m not paralyzed… But a huge part of me is not.  That huge part feels like I should just be able to live life normally without having to choose between not being able to drive right now or paralysis in ten years.  It should have been my right to be able to play with my baby for longer than half an hour at a time without feeling fatigue.  I should have the right to go to work, the right to pick up dinner, the right to run errands, but these stupid brain lesions have stolen that right from me.

The question I have to ask is this:  can I deal with freedom from and let go of my need to have freedom to?  Right now, I have freedom from responsibility, freedom from driving, freedom from blindness, freedom from paralysis.  If I think of it that way it seems pretty great.  What I’ve lost is the freedom to choose, the freedom to drive, the freedom to do strenuous activity.

In conclusion, all in all, despite the list of benefits I listed before, I probably wouldn’t recommend developing multiple sclerosis to anyone.

Top 10 benefits of having MS

Ever since I was diagnosed with MS, I’ve struggled to deal with the impact that it and the treatment have had on my life.  Today I wanted to take a look at things on the bright side.  Here are top 10 things that make MS more bearable.

  1. I’ve lost 17 lbs. Nuff said.
  2. Since my feet are really numb, I can wear any kind of shoe that I want, even 6 inch heels for an entire day at a convention without feeling even a tiny bit of pain afterwards.
  3. I have a Dr’s note that says I can work from home whenever I feel dizzy – which is pretty much all the time in the summer since heat aggravates my symptoms.
  4. I have medication that I have inject weekly — and while that sucks,for the month before I got the injection pen Brent had to inject me in the butt which made a great story.
  5. After my spinal tap I was ordered by the Dr to drink coffee and tea for a week.  This might not be a big deal to you, but I’m a converted Mormon so drinking that expresso felt dangerous to my salvation, but oh-so-delicious.
  6. Since heat aggravates my symptoms I can justify keeping the air condition blasting all the time in this huge house during a heatwave.
  7. I’m participating in a study, so one day I’ll be a part of one of those medical journal articles that say “in a study of X people along the course of 10 years…”
  8. Numb fingers mean that if I one day get diabetes I can check my blood sugar all day without worries.
  9. I got to see the inside of my brain and have 2 CD-roms full of pictures of my insides.
  10. I can blame any stupidity that falls out of my mouth and into the air on brain lesions and not my actual thoughts.

My MS Story

It all started when I started to notice that there was a cellphone stuck in my abdomen. I remember clearly I was driving to an job interview on one of the days where I had 6 interviews in 2 days and I suddenly had a distinct vibrating sensation, right below my bellybutton. My husband was a med student at the time, so I immediately reported it to him and asked him what he thought it could possibly be.

“It’s probably gas.”

Now, I’m not bragging or anything, but I’m pretty well acquainted with gas, and I knew that this was definitely not gas, it was a cellphone in my belly. This continued for a few weeks. I kept trying to feel my stomach when the sensations came to see if I could feel my insides actually vibrating like a GameBoy Motion Pack to no avail. There was even one scary moment where I thought the feeling had moved to my butt as well, but then I realized I had inadvertently sat on my nephew’s Playstation controller.

After a few months I became so used to the vibrating feeling that it no longer freaked me out. I think humans can get used to pretty much anything as long as long as it doesn’t interfere with the things they want to do every day. This has become the story of my life.

Then, one day, the day we were preparing for our fourth move in a week of being nomads, I noticed something strange. The left side of my torso was gone. If I looked down it was still there — but when I tried to ‘feel’ it with my mind I couldn’t place it. Similarly when I touched it with my hands I could feel my torso with my hands but I couldn’t feel my hands with my torso. That was when Brent told me to go to the doctor.

I went to my internal medicine doctor who told me it might be gas but referred me to a neurologist. The neurologist ordered some MRI’s but he didn’t seem to think there would be anything serious going on and told me that it might gas. So, like an idiot, I decided to not get the MRI’s done.

Fast-forward to a few months later, I suddenly started having another odd sensation. Every time I bent my head down (ok, I’ll admit it, i noticed it while texting and driving at the same time), there was a weird feeling that went down my back and my hands and feet went numb. Now I was definitely freaking out. I called Brent again, and he told me I had to go to the neurologist again since my symptoms had changed.

Three days before the day that I had my second neurology appointment, my feet went numb. As the day progressed the numbness spread upwards and by the time I went to the doctor I was numb up to my ribcage. When I reported these symptoms to my doctor he said that these were classic signs of MS and that he definitely wanted me to get some scans of my back done.

I got the scans done and sure enough there were lesions on my neck and in my torso. The one on my torso was leaning to the left, explaining why I had lost my left side for some time. After these results the doctor told me that he was 90% sure that I had MS but he wanted to get a spinal tap and some brain scans to be certain.

This entire time my symptoms had been getting worse. By the time that I got my spinal tap, I hadn’t been able to feel my fingers for a few weeks. I still can’t right now, which makes typing somewhat problematic sometimes since I can’t feel the indicator nubs on the keyboard. I’ve gotten used to it, though.

The spinal tap came back positive for MS markers. The brain scan showed many lesions — they looked like little flames lighting up my brain. I couldn’t believe how many there were… How long had my body been trying to kill my brain, I wondered.

The next step for me is medication to try to stop the progress. I start tomorrow. Let’s hope that it works because I’m tired of being tired and numb and sick all the time. All I can do is be positive and believe in the doctors and Brent when they say things will get better with time.

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