11 January 2010

2010 Walk MS Kick-off Event

You know that tingling feeling your feet have after they've fallen asleep and start to wake up again? Imagine living with that all day - every day.

I do.

Imagine sitting at your computer - and all the sudden you can't see a thing. Everything is complete fuzz and very very dark - and you don't know why.

I will tell you first hand - it's excruciatingly scary.

I was annoyed/scared enough to see my family doctor (John Doolittle - no jokes please). He is absolutely the best I've ever experienced. Completely unwilling to let things slide and a memory like an elephant! Based on this episode and other things I'd talked to him in the past - he was the first person to utter those words to me:

"I think you may have multiple sclerosis."

Those words hit me like a ton of bricks. I did anything and everything I could to pretend they'd never been said. Ignored his requests to send me for more tests.

Until this happened:

Imagine walking in to a room and finding the person you love on the floor - unconscious. I can't imagine what that moment was like for Randy (my husband), but that is what happened.

Obviously - these events turned into a lot of doctor appointments and my introduction to neurologist Dr. William Au. After multiple MRI's and one horrific spinal-tap, I was officially/formally diagnosed with MS in July 2005.

Randy and I met with Dr. Au and had a lot of our questions answered. We were given information on the various treatment options and told that we should decide if we wanted any more children before a treatment plan was started.

After a lot of thought, we decided that we were content with our family and I began a Rebif treatment regimen that September... only to find out three weeks later (SURPRISE) that I was pregnant! Obviously - I had to stop treatment at that point until after the pregnancy.

After Heaven was born (May 2006), I joined on to a medical trial through UC Davis. The trial was looking into an oral medication (as opposed to injections). Unfortunately, after being involved in the trial for just under a year, I was ineligible to continue due to other complications and a low heart rate. I am currently taking Avonex. Once a week Randy gives me the injection. I really am thankful for him... if I was left to give myself the injections - well - let's just say that it wouldn't happen.

People ask me - how the MS affects my life - what symptoms I experience. The biggest (and most annoying) - Fatigue! This is the one that I hate the most. It has the biggest impact on my children and our family activities. Ugh! I can't tell you how often I'm tired of being tired!

The other main symptom I deal with daily is a major loss of sensation & strength in my left arm and leg. Like anything else, there have been good days and bad days. Thankfully - so far, the good outnumber the bad!

Ultimately, I have never been successful in describing exactly what it is like to live with Multiple Sclerosis. There are days that seem to be a self-contained rollercoaster – and there are days that I am almost able to go into a full case of denial because everything seems to be going so well.

I came across an article last year called The Spoon Theory. While the author suffers from Lupus, as opposed to MS, she has succeeded in describing what I have not been able to express. From her description of a daily battle with fatigue - to the oddly difficult decisions that have to be made - ring true. Most of the things that many people take for granted. Use the link to visit and read The Spoon Theory. It really is wonderful reading! http://www.butyoudontlooksick.com/the_spoon_theory

Please consider joining / sponsoring me in Walk MS. The walk is a wonderful event that helps to raise awareness and funds for the fight against multiple sclerosis. Because of generosity and support from people like you, the National MS Society is moving one step closer to a world free of this disease. Thanks again for all your support and helping to bring an end to multiple sclerosis.

I wish you a 2010 full of unlimited spoons!