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.

"The Look"

There's certain 'Looks' that only people with an invisible illness such as MS are familiar with. Co-workers or friends or even family that is aware of the diagnosis have all taken part in sharing (albiet unwittingly) "The Look" with me. It's one of the things I detest the most about people knowing about my MS.


Now - this look comes in many different forms, right? For me, well there is the one that reeks of pity - the one that tells you they think you're putting on an act for attention - the look of guilt - and the one where people choose not to see you anymore.

None of them are easy to deal with.

The people I love the most in this world rule the "guilt look" unlike anything I've ever seen before. Lord forbid I have a relapse - or share with them when I'm having a difficult moment... that's the apparent 'green light' for them to paste this look on their face & in their eyes... makes me wish that I could snap a picture of that look & let them know it actually makes me feel like *not* sharing anything with them sometimes. I know they mean nothing mean-spirited by it - and likely have no idea how it is read - but its there nonetheless.

Co-Workers, on the other hand, are split into a few different groups. The core group I work with face to face on a nearly daily basis - they've accepted my disease & have been amazing... the ones on the outside of this core group - that are located in different offices I only have to visit once in a while - well those are the ones that either give me the pity look or the look that says "whatever - she's just looking for attention."


I wonder - what 'looks' others with an invisible illness get - and what they say? I'm sure there are more out there than the four I mentioned...

Don't get me wrong - there are good 'looks' too... Like the ones from my kids that say "I love you" even when I'm having a bad MS day.The look that hurts the worst though - is the look from someone I truly believed was one of those 'thick or thin' kind of friends - who now chooses to look right through me & act like I don't exist. Part of me understands - that dealing with this disease & accepting it is hard sometimes - and they just aren't really sure what to say or how to deal with it...

Acceptance

Funny - that one word can make such a huge difference in our lives.

Acceptance of the diagnosis is something I’ve been yo-yoing around with for the last 9 years. Somehow though - I have to wonder if I’ve ever truly accepted it. I was formally diagnosed with RRMS just over 5 years ago.


Does having RRMS make it a bit harder to accept? I say that because there are times in between relapses that I don’t even think about it & how my world may need to / has needed to change. On the flip-side of that – give me a bad MS day – and watch out! The tears are flowing, the anger is building, and although I received the diagnosis quite some time ago, it’s like I was just told for the first time all over again. The fear of the unknown.


I think (and hope) that I’m getting better with the whole acceptance thing. I’ve been open & honest with just about everyone with my diagnosis – maybe everyone but myself. I adamantly refuse to allow MS to rule my world – and for the most part I do pretty darn good at that… but it’s those brief moments of defeat – when I know that a side effect / symptom of this windy curvy life path we’re on has caused me to stumble that make me question myself.

Have I actually dealt with and accepted the diagnosis?


Which brings up even more questions – If I haven’t, do I even want to? If I fully give acceptance to this diagnosis – does that mean I’ve given in or given up? That’s a mental battle I fight quite often.


Then I step back & look at it – I believe one thing… I have accepted that I have a war to fight.


So – maybe that is what acceptance of this diagnosis is all about… I could accept & give in. I could accept & give up. Or I can accept & turn it into a battle cry.


That said - the war has started & the fight is on! :)