MS Walk 2014

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The 2014 Walk is on April 27 in Saskatoon! Register now! Click on the above link.

Clinic Visit and Things Going On

Yesterday was my annual visit to the MS Clinic.  To be honest, it was a waste of time.  And that's a GOOD thing!! Why?? Because I'm doing so great!!  Yay me!  Everything is so good that they don't even want to see me at this time next year - I can push my visit to 18 months from now!

I did the standard neurological tests, which included walking down the hall so she could check out my drop foot.  Funny thing is that my doctor hardly noticed it - that's a big deal since my foot is my biggest complaint.  It's still there but maybe it's not as bad.  Or maybe yesterday was just a lucky day...

I haven't blogged in awhile so here's a quick catch up on things MS-related:  Jason and I recently went to the MS Society's Dinner of Champions.  I raised over $1000 in last year's MS Walk so I was invited to go. It was good but I wouldn't go again unless they change venues.  Food was terrible.  But it was nice to be recognized.  I'll go again if (when) I make the $5000 club...

Speaking of the Walk - registration is now open.  Guess it's time to put the team together for next spring! So if you're around on April 27, 2014 I'd love for you to join me! Or if you can't then donations are always welcome! ;-)

Ouch

So I started seeing an Acupuncturist.  I read somewhere that it may help with foot drop.  At this point, I'm willing to try anything.  I don't know if it's getting worse, but if anything it's getting annoying.  I can feel it (my foot feels heavy and doesn't move as well as the other) at Zumba, and I can especially feel it about halfway through my Ukrainian dance class. I haven't went for a run in over a month because the last time I did I tripped and almost face-planted right on my treadmill.  It scared me a bit.  So I'm trying acupuncture.

I've gone twice now. I have a couple more appointments scheduled.  I don't know if it's helping.  She's treating me right now for the foot drop, for fatigue, and for my mood swings.  I do notice I'm not as tired, so maybe it is helping.  And the other day at Zumba after treatment #2 my foot didn't feel as heavy as it used to.  So it could be doing something.  Or maybe it's all in my head.  I have no idea.  That's what sucks the most about MS is that I really don't know what's normal or what's MS related.

But I'm going to get poked with about 15 needles every week incase it does help.  Fun.

What the heck?

The bad thing about MS and its attacks, is that sometimes you don't actually know if you're having an attack or not. Take the last few days for example - my skin has been hurting, which usually means that I've caught the flu and have some kind of virus.  But after four days it hasn't gone away, even though there is no flu.  And my torso and leg is feeling kind of numb.  So is this an attack? Honestly, I have no idea.  If it is, I can't say that I'm all that surprised. I have been a little stressed lately, and have put way more on my calendar than I should have.  But I don't want to admit that it's an attack. That means that it's been less than two years since my last one, which means my doctors are going to be all concerned and tell me that I should think about going on medication - the last thing that I want to do right now.

So I'm just hoping that maybe it is some kind of virus and maybe if I just ignore it, it will go away...I can't stop living my life just because of this. And I won't.

Ummmmmm.....

The article I read yesterday sparked something in my brain. It was all about cognitive function and MS. (See the adapted article  HERE.)  It was all good, but the part that got to me was "Sometimes, these invisible symptoms become visible. A person with MS may pause while speaking, or they may have difficulties finding the right words. Or, they may seem to“fade out” mentally and lack attention."

Hmmmm....so I'm NOT just crazy and getting old??  I really had no idea that this was even a symptom of MS.  I've been noticing that it sometimes takes me awhile to get a thought out, something that I never had trouble with before. I can't seem to find the right word sometimes (I know the word I want to use but it doesn't come out of my mouth), and a lot of the time Jason has to finish my sentences and thoughts for me.  And the "fade out" seems to happen more often too. I can be having a conversation with someone and once it's done have no idea what they just said to me.  My mind has wandered elsewhere.  It's rude. I know it is.  But it happens and I don't know how to make it stop.

The whole article is HERE.   It's good. Give it a read.  Actually the whole website is good....now what was I doing...

Life Since The News

That diagnosis of relapsing-remitting MS happened in August of 2007. So I've officially had MS for 6 years.

The last 6 years have been a roller coaster, both physically and emotionally.  The worst attack I remember was that one in August 2007. But there have been a few since, and they've pretty much all involved a numb left leg.  When I was pregnant I felt my absolute best.  But then an attack would happen about 6-9 months later, which I was warned about by my doctor.

Speaking of doctors, after my initial diagnosis, my family doctor referred me to the MS Clinic, which is located in City Hospital in Saskatoon.  I remember my first trip there. I think it was January 2008. Jason came with me, and we answered a bunch of background questions for almost an hour. Then we met my doctor, Dr. Knox, who did all these weird tests on me. I remember thinking that she was crazy, and all of these tests were crazy, and why was I even here. I was still in denial, really.

I go back to the clinic once a year, and every year we answer questions on how life has been, and I go through all the crazy tests again.  Instead of dreading it, I look forward to my appointment now.  I even find it funny when I "fail" a couple tests. (One of them is the doctor hits a tuning fork, which then vibrates, and she touches it to my legs and arms. I can feel it everywhere until she puts it anywhere below my left knee. It's still vibrating but I have no idea. The other one is when the doctor take my big toe and moves it up or down. I have to close my eyes and tell her which way my toe is pointing. I am wrong more than half the time).

So basically this is what my MS is like:

• My last attack was December 2011, and lasted 3 weeks.
• I'm not on medication, since they don't even consider you for drugs unless you've had two or more attacks within two years.
• My worst daily symptoms are fatigue and absentmindedness (I'll get to that in another post one day)
• Heat brings on fatigue, so the summer months are really tiring for me.
• Major stress and fatigue is what will trigger an attack for me, so I have to keep my stress levels low and get as much rest as I can.
• Since I started working out I've felt awesome, and the doctors even commented on how great I'm doing at my last Clinic appointment.
• Two years ago I was told I have "foot drop", another fun MS problem. Basically my brain sometimes doesn't tell my right foot to lift my toes. If I walk a long distance my right foot starts to stomp harder than the left, and I scuff my toes (I'm surprised I don't have holes in my shoes). Since I started running I've noticed it more, and the Clinic gave me a Foot Up to help it. It attaches to my running shoe and helps lift my toes. I can't run without it now! 

That's pretty much it. I take everything one day at a time...

This Is How It Went Down...

So I might as well fill you in on my whole story.  It all started about 15 or so years ago, maybe more.  I was young - I'm going to say 14 or 15.  My left leg went "numb". Not numb that I couldn't feel anything, but I don't know how else to explain it. Tingly, less sensation than normal. It was weird.  We (my parents and I) figured I had a pinched nerve in either my neck or my back.  This was no concern, since I'd always had neck/back pain. I went to the chiropractor numerous times, and eventually it went away.  But a year or more later, that numbness came back.  Again I was off to the chiropractor for my pinched nerve, but this time it took a bit longer for it to go away. Mom shuttled me off to the doctor, who had no idea what it was.  The doc referred  me to a neurologist, who told my Mom that maybe it was MS. Mom laughed in his face and said he was crazy. And then that numbness was gone. So were all our thoughts of it.

Then I was fine. For a few years, actually.  From what I remember, everything was good. I was with Jason at this point, and had finished up at SIAST. Then the stress started. Mom was really sick, I was planning a wedding, and working at a new job.  I thought I felt okay, then picked up a pen in my right hand to write on a post-it or something.  My note looked like a 4 year old had written it. What the heck was going on? I wrote like that 4-year-old for a few weeks or so, then everything returned to "normal". 

Fast-forward a few months, to when that damn left leg went numb again. But not just my leg. The left side of my torso went went numb too.  Jason said it was time to go back to the doctor. And a new neurologist.  Yep, my torso being numb was a giant red flag waving in everyone's faces.  Time for a few tests.  I went for an MRI. That wasn't fun.  But being shoved into a teeny cylinder, not being able to move, with loud knocking noises in your ears for a hour wouldn't be fun for anyone. And then the best part was when they pulled me out, shot me up with some kind of IV, and shoved me back in.  More tests.  More fun. 

My test results came back.  And I still didn't have an answer.  My MRI showed lesions on my brain, which could possibly be MS.  But we wouldn't know for sure unless something like this happened again.  So I didn't have an answer to anything at all.  All we had to do was go on with life and hope that was the end of it all.

It wasn't.

A couple more years went by. I was feeling good. We had  9-month-old beautiful baby boy and everything was wonderful. Until I woke up one morning and couldn't feed him a bottle. I could barely get my hand around it.  I knew what I wanted to do but there was barely any strength in my hand. I shook it off, until I went to boil a pot of water and almost spilled it everywhere because I could hardly grip the handle.  I remember looking at my hand and thinking "Close your fingers and hold the stupid thing!" But I couldn't.  My right arm was basically useless. I could move it but had no strength.  I called up the neuro and in we went...

I don't remember the appointment.  I have no idea what he said.  I remember sitting in the car and Jason looking at me, worried and scared. I wondered what his problem was and why was he looking at me like that.  Then I realized what was going on. I had MS. I knew it, after all the weirdness that's been going on, but now it was real.  I sat in the car and cried.  I cried all the way home. And Jason let me cry about it for the rest of the day. Then he told me that it was up to me how I wanted to live my life, and crying and worrying about what "could" happen was not going to be the way we were going to live it. He was right.

I Read Something Today

I read something today that really hit me.  "One of the hardest parts of having MS is that no one knows you’re sick because you don’t look sick."  That is so true. People don't "get" that MS is a disease. It may not have in-your-face symptoms, and no, I sure don't look sick. But I am.

I'm sick in a way that you can't see.  For example, you don't see how tired I am.  Chronic fatigue is the worst, and that's my biggest symptom.  All you might think is that I'm lazy when I am having a nap mid-afternoon. Or that I'm boring because I don't want to go out and would rather just go to bed early and sleep.  If I run myself down, I risk an attack. So sleep is my best defense.

I power through the best that I can. Jason is super understanding and lets me nap when I need to. Same with my kids. They know that Mommy needs her time to lay down and they occupy themselves. 

So today I'm going to start writing. I hope that someone reads my blog, and I hope that I can at least help that someone understand what MS is.

I welcome your comments. Really. And please share with your friends and family!

M