17 October 2010

My MS Story - Revisited

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 more ‘suggestions’ that I might have MS. I wasn’t ready or willing to accept their “diagnosis” – so I ignored it somewhat successfully for 2 more years… until I started work for my current employer… In their attempt to add me to their drivers insurance, for the rare days I might have to drive a company vehicle, I found out that the neurologist I met with after my fainting spell actually requested the DMV put a medical suspension on my license… In order to have this removed, I had to be cleared by my doctor and another neurologist!

This led to 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. (I know now that was pretty bogus information – but that’s another story.)

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. [Looking back, even the UC doctors believe I was on the high dose of the medication (it’s the low dose that was approved & released to market). Plus – right around the time I got ‘kicked off’ – there was an incredible amount of stress in my life that alone could wipe out even the healthiest of people… so I blame my dismissal on that.]

I then began taking Avonex. Once a week Randy would give me the injections. 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. A few years & a new neurologist later - I’m still having relapses – so the Avonex isn’t working as well as we’d like… I’m currently off any of the CARB drugs & waiting (rather impatiently) for my insurance to approve the oral medication that’s been released to market. In the meantime, I’m going in once a month for IV-steroid treatment in an attempt to keep relapse symptoms at bay.

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. Let me tell you – this is pretty annoying… imagine your husband coming up – he caresses your arm or sits next to you & rests his hand on your thigh – and you can’t feel a darn thing… *GRRR* - kinda puts a damper on the intimacy sometimes. And again - *GRRR!*

There have been good days and bad days. Thankfully, the good still outnumber the bad! I sit back & take stock of my life & realize that I’m truly thankful for what I do have – what I can feel… so – I’ll fight. I’ll share. I’ll do what I can to empower others with this disease. I’ll find a work-around when tasks become difficult.

And most of all – I’ll live my life – not allowing MS to define who I am.