Tuesday, June 22, 2010

My Story... So Far... Part 5

I ended up finishing hair school with honors (Champion!). The next step was apprenticing under a senior hair stylist in one of the best salons in Calgary. It was tough going, long hours- I came to realize that as a stylist if you weren't there and available to take a client, you weren't making money... This was a big realization for me, I mean I rationalized going into this line of work based on the flexibility of the hours.

Once I completed all the training and apprenticing it was time to build my own clientele. This is a HUGE undertaking with a lot of stress attached to it. Every person I met was a possible client, I had to be ON all the time. It was exhausting! Things were happening though and although I was having MS attacks every 3 months or so, I was keeping it together and I was making it happen.

My Mom and my Step Dad moved away, which meant that I moved out with my younger sister. We needed a third room mate so I reached out to a friend that I went to hair school with. She moved in and instantly we became inseparable. One of the positive parts of this particular friend moving in was that it was time for me to start doing daily injections as part of my "disease modifying" excersise, Copaxone is the drug of choice through the Calgary clinic. I know they will probably take offence if they ever read this, but it's true and with good reason; the head of the clinic fronted the research team who invented the drug. Anyway the reason I was excited about Sandra being there is that unlike me, she was tough as nails. So when the VRN asked me if I had someone that could participate in the learning and administer the drug for me for the first few days until I became more comfortable, I was able to respond with a resounding "yes".

The VRN arrived, they come to your home which is awesome. We had the sponges and the oranges she had requested as well as the starter kit all ready. She walked us through the whole process and we administered fake shots to the oranges and the sponges like pros! Then it came time for it to be my turn. The nurse looked at Sandra and asked if she was ready to do the real thing... My stoic friend turned white and shock her head no. She looked at me and said, "I'm sorry, I could do this to ANYONE else, but I don't think that I can do it to you."

I knew this was hard, this was hard for EVERYONE and I loved that my friend cared for me so deeply that she couldn't inflict me with this kind of a thing. I took a deep breath... There's no time like the present and my thought was "why put off to tomorrow what you can do today?" (Champion!) So the nurse talked me through the process of filling the syringe and mixing the drug and loading the needle into the autoject that they supply you with. She counted me down to the moment where I hit the trigger and had the first of many self-injected needles full of medicine.

It hurt. I had an immediate "site reaction"; that's what they call it. I call it a huge ass goose egg on my leg! I iced the site and was told "that would help." With that the nurse left and I sat with ice on my leg realizing that I was going to have to do this everyday FOREVER... That was a hard pill to swallow. My leg burned as it absorbed the rest of the foreign body. I begrudged this.

Wednesday, June 16, 2010

My Story... So Far... Part 4

In the new year I officially started my "new" life at hair school. It was way more intense than most people give it credence to be. The physicality demanded on the job was one thing to get used to, the creative another, but it was the science that was the most intense for this girl. Anyone who thinks of hair stylists as being dumb, should take a day and walk in their shoes! I'm sure that being a chemist is a hard thing, but what about being a chemist that affects the thing that people hold dearest? Their appearance! It's not easy, sure we make it look easy, but it really isn't.

I was keeping up and doing pretty well. I hadn't even disclosed to anyone at the school that I had MS, which back then was a BIG win. Being the natural competitor that I was/am I decided to enter into the hair school fantasy competition for the opportunity to compete at the provincial level at the BIG show, the ABA. I worked my butt off to win the in-house competition. It took me probably about 40 hours, in the 48 hours we were given, to get it to the point that I was happy with it. It was all done on a mannequin head so I didn't have to worry about the fatigue level of a model, which meant that I could go on ignoring mine...

When we started to get ready for the provincial competition it got intense, fast. I was still working at the health club while I was going through school. I never slowed down at all through any of this to be honest. (CHAMPION!) I had to keep up and in fact I think I thought I had to "out-do" because of the fact that I had MS; not despite it or anything, but because of it.

The owner of the school was demanding, she liked to win more than I did it seemed. I was taken out of my "normal" classes to work on my vision without distraction. STRESS!!!! My hands started to go numb. I was dropping stuff, left right and center. It was embarrassing. More than that, I knew that seeing this competition through would probably mean I wouldn't get through the rest of my commitments. It became obvious that I  had to talk to the owner of the school.

I made the appointment and sat down across the desk. I could feel myself shaking, I was actually going to tell her my secret... I felt my face go red as we started to speak and I told the woman across the table the bad news, that despite all of the time she had invested in me, believing in me, I wasn't going to be able to see the competition through. I saw the look of disappointment on her face as I took another big breath, my voice became shaky and tears came to my eyes as I met and locked in on hers. "You see, I have MS and I'm noticing that the stress of all of this is really effecting me." HEAVY PAUSE... I was full out crying at this point, as I continued to reiterate my apologies.

My mentor took a moment as she took in all of the information I'd placed on her and the look on her face softened as she said; "I always knew there was something special about you Shara and now I know what part of that is. Thank you for trusting me with this and please don't give the competition or disappointing me another thought."

WOW! That is not how I saw that going... I hugged my favorite teacher on the way out of the office and headed home. I was overcome with emotion having said "it" out loud and being met so graciously in response. It was a major moment in my disease and it really was a moment that made it okay for me to disclose going forward; I had nothing to apologize for; I was "special".

Monday, June 14, 2010

My Story... So Far... Part 3

The fact of the matter is that the story my first neuro told me, about some people with MS only having one MS attack and then going into a life long remission... Turns out, that wasn't me. I gave it a good go though; I tried with ALL of my might to MAKE it my story, but alas it didn't stick.

The truth is it wasn't even close to being my story, although the land of denial was enjoyable between exacerbation's. It was, when I would get hit again, a huge b*!ch. Not only was I dealing with the physical symptoms, which were still new to me,  but I was also going through the mental process of being re-diagnosed ever three months or so, right along side.

I fired my first neurologist... I think I blamed him for putting it out there that I was going to be well, when that was clearly not the case. He also placed himself in my Mom's bad books by mentioning that I might not want to rush into an education stream until I knew what my disease progression looked like. So he was sadly out. I am happy to report that the clinic replaced him with an AMAZING neurologist who encouraged me to pursue whatever it was I wanted to pursue and was working on some really interesting research at the time that we enjoyed talking about as well. I should also mention the "talk" my Mom had with him on "our" first appointment right outside the office door, where she informed him not to discourage me from pursuing whatever it was I wanted to pursue, because it was her contention that I was putting off school because of what the last neurologist had said.

Symptom wise I was looking at a lot of different things; shaky hands, the famous MS hug (which for those of you who are not in the know, means a tightening around the the mid section that feels like you're wearing a constant girdle, only without the built-in support), coordination became harder and fatigue was kicking my BUTT! All the sudden I went from the ski bum, party girl, to the quieter; okay, not silent- OBVIOUSLY, for those who still know and love me, but there was certainly a HUGE shift.

"Friends" started to pull back a little, and by a little, I mean A LOT. My Saturday night party pack turned out to be more of a fair weather type of crowd, then the life long buds I thought they would always be. I mean we had done shots together and speaker danced all night long! The truth is, people were scared and they didn't know what to say; they were 21 like me for heaven's sake! I decided something radical had to take place... A paradigm shift to shake me out of the reality that was SOOOO letting me down.

Although I, myself was not a high maintenance kind of girl, I'd always been the one who cut all my dolls hair off as a little girl instead of playing with them and I was always responsible for getting all my teenage girlfriends ready for the junior high dances. I'd been going to the same hairstylist for a lot of my life and she knew my propensity for hair and had discussed it with me prior to my diagnosis as a possible career path. I decide this was what I needed to do. I needed to go to hair school. It was obvious to me; I could create my own schedule and re-educate down the road if I chose to. So that's what I set out to do. Create a new reality (another CHAMPION choice indeed)!

I discussed the idea briefly with those around me. Actually more to the point, I sold the idea to those around me. This would kick me into a whole new reality; new friends, new ideas, new passions and styles... Away from the snow and the ski's that were getting harder and harder for me to control. I had to think on the snow all of the sudden, that wasn't how it was meant to be!

The question was; would this disease let my newly created reality be?!

Sunday, June 13, 2010

My Story... So Far... Part 2

After my run in with blindness I had, as I told you, already decided that the doctor's warning about MS had nothing to do with me. I took the steroids and I saw the optic-neurologist as promised and after a few weeks of rocking the pirate look with a patch over my left eye, things settled down to being "normal". I went back to my old ways of burning the candle hard at both ends and didn't allow myself the luxury of noticing that the mornings after had become harder and harder to contend with and that my energy levels just weren't where I was used to them being.

The next big stop on this journey came when I woke up to extreme tingling in my ring and pinkie fingers on my left hand. This was accompanied by an insanely sensitive upper quarter of my face- again on the left hand side. The closest description I've been able to conjure up in trying to explain the feeling that ensued on my face at that time was that it felt as if my skin was off and all of my nerves were trying to protect the other innards of my face. It was EXCRUCIATING! It hurt to blink.

Again it was off to the family doctor for me... I wasn't as surprised this time as she pulled out the old safety pin and started pricking me all over asking me to alert her when I felt a difference. This was hard because this time, it felt different almost everywhere. Finally the doctor threw away the safety pin in the yellow sharps disposable box. She took a moment and then went on to explain to me that the two fingers I was complaining about and the quadrant of my face that was experiencing what I had decided to equate to "none existing flesh eating disease", shared a nerve path. This connection and simultaneous irritation made her think there was something happening within my nervous system. Further more because of the good old optic neuritis I'd already experienced she'd decided to refer me to the MS Clinic.

"CRAP!" I knew this wasn't going to end well.

So here's what I knew about MS at this point; commercials from the society with sad fathers in wheelchairs having their faces washed by their kids with a warm face cloth... This didn't explain a whole lot for me and it certainly didn't make me feel better. Now please keep in mind that this was before the day to day availability of Google. I felt like all I could do was sit and wait, at least at this point I could see. (Champion thinking, that's me!)

Mom came with me for my appointment at the MS Clinic. We sat in the waiting room a little relieved that the doctor was running late because it gave us time to de-brief and read every single pamphlet in they had that explained what exactly MS was. And then they called me into "the" room. The nerdy looking neurologist walked into the room about 15 minutes later, he looked like the spitting image of Robin Williams in the movie "Awakenings". This doctor gave me the needle point run down that I had begun to get used to, he also made me walk in a straight line, put my legs together and my arms out and close my eyes, amongst a series of other tricks of the trade.

He told me that he was preliminarily diagnosing me with MS. I had an MRI booked to confirm his hunch. At this point he started to explain to my Mom and I what MS was and what it looked like for me and my future. He told me it was an auto-immune disease that affected the central nervous system. He told me that he couldn't predict conclusively how this was going to affect my life long term. He also went on to tell me the "good news"; turns out that I had relapsing remitting MS... The neuro went on to explain that there were people out there that had one or two "relapses or attacks" with MS and then went into remission for the rest of their life... WELL THIS WAS OBVIOUSLY GOING TO BE ME!!!

My Story... So Far... Part 1

Life is a funny journey. For me it has come with my fair share of ups and downs. It's my contention that it's what you choose to do with those ups and downs that separates the "victims" from the "champions". I think this is a concept I learned early on as a competitive alpine ski racer, unlike some sports that are artistic and open to interpretation, my sport of choice was cut and dry; the fastest one to the bottom wins! This created a black and white contextual choice- do you want to win or do you want to loose. I've always chosen to be the winner; it's more work but it's more fun, in my humble opinion too.

I use skiing as my metaphor for my disease process and progress fittingly I think. You see it was a warm winters day in February while I was enjoying working as the head coach of my childhood ski team that I noticed something wasn't right with my left eye. On my first ascent up the Mile One quad the sun caught my right eye just enough that it forced it to close; with that the whole of the world disappeared and I was faced with the disturbing realization that EVERYTHING was black. I was blind in my left eye. Not wanting to disturb the young athletes I was ridding with and responsible for I sat quietly on the chair playing with my new found reality. I closed my right eye and then my left eye over and over again. I gently took my hand out of my ski mitt and rubbed my left eye hoping to remove whatever block had taken over. Nothing worked.

As I exited from the chair lift as I had done more than a million times before, something was different. I had no depth perception at all and no idea where the ski hill started and my skis ended. Seeing as I put on my first pair of skis at the age of two, this was a very disturbing event for me.

I'm going to be very honest with you now, because I could go on about my athleticism and how I'd never been in better form, which is true. The truth is, I also enjoyed my "ski bum" lifestyle in those days, which meant skiing hard and playing harder. My point is; I had been out the night before dancing and drinking with all of my friends. I was 20, I thought that's what I was supposed to be doing. The truth is that in those disturbing moments on the snow I truly thought that I had done this to myself; I really did think that I had drunk myself blind and I certainly wasn't proud of it.

Somehow I got through my day of coaching and instead of stopping and thinking about the seriousness of what had transpired I shifted into gear. You see coaching was my weekend gig, I needed to pack-up and drive three hours to get home and be ready to go the next day for my new week day job; customer service at a high end fitness gym. I was working seven days a week trying to save up some money to move out or go traveling again or maybe both. I was an athlete I could easily do it all. So I jumped in my car and drove on the winter roads, in the dark, through the mountain passes, with one working eye... Not the smartest of choices, but the "winning" choice at least at the time.

I pulled into Calgary in record time, ski racers aren't known for their cautious driving efforts. Most of us drive like we race; "if you aren't first, your last!" We come by it naturally. I walked into my Mom and Step-Father's house knowing that I had to avoid a bunch of questions and just get to bed and sleep off this "bad dream". I avoided them skillfully and made it to the safety of my room without incident. Finally I could sleep off this HANGOVER and wake-up recharged and refreshed.

That's not how it happened though... I woke up and played with my eyes in bed expecting I would immediately "see" a difference because of my good Sunday night behaviour. Nothing had changed. When I closed my right eye, everything was still gone; little did I know then that it also meant for me that nothing in my life would EVER look the same again.

Mad at the world I got up and went through the process of getting ready for my weekday job; shower, makeup, hair. I ignored my Mom as she called after me to eat something, I had to escape her "mother knows best" scrutiny in case she noticed that something wasn't right. Once again I jumped in my car without thinking much about the consequences, except to note that I should probably take the back streets downtown.

Five minutes into my drive I pulled over. Things were coming out of nowhere and then some. I wasn't as rehearsed at driving as I was at skiing, I couldn't "fake" my way safely to my new job. I picked up my brick of a cell phone that I was given for "emergencies" only and dialed my Mom. I tried to calmly explain that I had no vision in my left eye between the tears and that I needed help now. Within minutes of the call my Mom pulled up beside me with my sister in tow to drive my vehicle home. She told me she'd already called my family doctor and my work and that we wouldn't be going straight home.

My family doctor ran around the office like a crazy person. She tested my eyes and looked deeply into them with her light. She pulled out pins and started sticking me with them all over, I thought at the time she might be on crack. This did not seem like normal doctor protocol to me. She called down to the office manager to call and make an appointment with a opthomologist for me. I looked at my doctor and tried to explain that I would be available the following morning because I didn't start work till 2 or 3pm. My doctor looked at me and said in no uncertain terms; "you and your Mom are going now." And that was it, out of the office we marched, instructions in tow and a million stories running through our minds.

I wanted at this point to lean over and calm my Mom as she drove like a maniac and say something reassuring like "don't worry mom, I just had a few extra tequila's Saturday night; everything will be fine." But somehow I didn't think that was what my Mom wanted to hear at the time. I really did think that everyone was over reacting at the time. That is until we reached the specialist's office.

I walked to the desk to inform them that I had arrived. I knew from past experiences that this was going to take awhile as I looked around the office with my good eye and saw probably about 15 people sitting, waiting ahead of me. The alarm bell finally resonated in me when the woman behind the desk took my information and my health card and then said, "okay Shara, follow me." She took me directly into a dimmly lit room. Now I was nervous, now I was scared.

Before leaving my Mom watched the nurse squeeze drops into my eyes and turn off the lights behind her. "Shara, the doctor will be in soon. These drops are meant to dilate your eyes."

"CRAP!" I thought as I sat in the dark, "this is not going to end well."

The doctor came in with an intern. He looked in one eye and then the next. He pulled my eye lids back as far as it felt like they would stretch and made noises confirming that he had been "right" to begin with; "ahhahh, oh yesss, unhuh"... Then he flipped the light switch and took a seat on the doctor stool. "You see Shara you have optic neuritis", he explained. "That's when the optic nerve inflames to the point that it blocks the images from being transmitted from for eyes, to your brain. We will treat it aggressively with steroids and refer you to an optic-neurologist for follow up in about 3 weeks. I do have to tell you at this point Shara, that optic neuritis, in your age group is an early warning sign of MS; 70% of the young woman who are diagnosed with this go on to have a confirmed diagnosis of MS." And with that he wrote the prescription and left.

My mom and I walked out of that office like we were shell shocked having witnessed a war. "What the hell is MS?" I thought. "And why the hell would he put that on me? Hello, I'm 20, I'm an athlete... Sure my optic nerves a little swollen from all the tequila shots, but I'll be fine."