Wednesday, May 25, 2011

World MS Day!!

Today, May 25th, is World MS Day!!

Multiple Sclerosis is a neurological disease that affects people differently. Many people with MS are able to work for years after diagnosis. But many have to give up work, when greater understanding of the disease would enable them to stay.

About World MS Day

Why World MS Day?
Multiple sclerosis (MS) is a chronic, often disabling disease. It is one of the most common disabling neurological conditions amongst young adults in the northern hemisphere. Over 2,000,000 people in the world have MS. The aims of world MS day are to raise awareness and mobilise the global movement.

Website this information comes from:

This site shows what MS means to these people.
MS = ?
What does it mean to me?
Me = life of uncertainty.

What is MS?

Now to my story:

In January 2000, I had my first symptom of MS, something called optic neuritis. It is where the optic nerve becomes inflammed and it caused visual problems in the affected eye. At the time I didn't know what was going on. I thought I was losing part of my eye sight. I didn't find out until a few months later exactly what was wrong with me due to us being between a military move and having to wait for an Air Force neurologist to get me in to see him.

He told me the diagnosis:optic neuritis and said he believed I didn't have MS.
If I remember correctly I was given paperwork over MS though just in case I had more symptoms but I really don't remember. I just know somehow I had a packet with me the day I realized I had it before the official diagnosis.

My eye eventually went back to normal on its own. The doctor felt it was too late for me to get any steroids (solumedrol) and they wouldn't do any good so I had to let it "go away" on its own.

I did pretty well until August of 2002. My husband had only been out of the military for a few months and we were at first without insurance. I had just signed up for the Air Force National Guard in Texas and was doing my once a month assignments since July.

I began to notice a tingling in my feet. I heard different advice from friends and family, poor circulation from the way I sit, etc. I will admit I'm horrible about how I sit at the dinner table unless of course I'm somewhere else eating or even the way I sit at the computer.

I remember getting into the car and my husband driving me to Ellington Field for my training and I grabbed the MS packet to read on the way there. I just had this "gut" feeling that was what the prognosis was going to be for me. That weekend I found out I was due to leave for basic training in December, before Christmas.

I went to our physician who then sent me over to a neurologist and they diagnosed me with transverse myelitis. It's inflammation of the spinal cord. It was causing the tingling. I had to go down to the clinic everyday for a week and sit with the chemo patients while they received their chemotherapy I received my steroids through an IV. Steroids are the nastiest thing I can imagine tasting, yes even though they are in an IV.

It was at this time I felt myself getting worse though. My hands were now tingling. I was getting a buzzing sensation, numbness, tingling, and pain in my torso.

By September it was to the point I wasn't doing anything. I wasn't getting off the couch, I wasn't doing more than the bare minimum of moving around. Then one day I felt horrible pain, pain that had me crying tears in front of my children. My husband rushed home and took me to the hospital (one of the worst hospitals we now know) and they tried to tell me I had a pulled muscle.

As that week progressed so did I. I was to the point that if I grabbed a plate out of the cabinet, I would automatically hit myself in the head with it. That is how little control I had. By the end of the week I was losing all use of my hands. My husband then took me down to Houston's Medical Center.

They saw me right away, did a lot of tests, and was diagnosed by a MS specialist with MS. I had to stay there for a week and go through another week of steroids. I had pretty much lost all use of my hands and had to be fed. If you did things like make me look away and bent my finger down and asked me if you did or not there was no way I could tell at all. It was all a mess and so was I. I remember this was when they were having a deal for the 1 year remembrance of the victims of September 11th and I remember lying in the hospital room watching it.

I lay there crying for all those lives lost, crying for the uncertainty of my own future, and because I was told I could no longer serve my country and go after the bastards behind it all.

I came home from the hospital and slept alone in bed since it hurt if anyone touched my back or chest area. And I had someone at home with me around the clock to make sure that not only I was alright but that my children were cared for during this. By December I was much better but still tired.

I think it took a year before I didn't think about it every single day of my life and live in fear every single day.

I take a once a week injection to help slow the progression of the disease and will say overall I'm doing better than some. There are a lot of drugs to choose from but I wanted the one I had to take the least but it does give me side effects that one night that I do take it. It's like having the flu. I get fever, shakes, chills, pain, and the list goes on and on.

I also take a daily medication so that I don't have to worry about the pain in my ribs or tightness that I will experience due to nerve damage.

Heat is my enemy, it is the driving force, it is what stops me. It is what makes me weak. Heat is the main enemy of anyone that suffers from MS.

I realize I am a survivor and will continue to have to work on that attitude or else I will just give up.
I have to worry about things like will my liver last me a lifetime since the medication is hard on your liver. But I guess that goes with a lot of things. And while many worry about whether they will be able to walk in the future, I worry will I be able to write, scrapbook, and just enjoy the use of my hands in general.

That is MY story.


Carrie K said...

Wow! Reading your story brought back alot of memories for me. I didn't have the same symptoms but the feelings and fear before diagnosis. I remember it well! I have been having problems with my arm lately. But I know it will pass. A couple weeks ago it was my leg. Just gotta take it one day at a time and enjoy the good days!!

Judy said...

I came to your blog because I wanted to see what you create I found you thru another person I follow. I had no idea your blog was going to touch my heart deeper than any other has. You see my brother suffers from MS too, and so much of his story is similar to yours. Wow, the power of God leading us to people that he knows we should meet. So to you I say hello, and thank you for sharing your story. I look forward to getting to know you, and I will be praying for you as well.