Saturday, October 23, 2010

Hopes... Fears... Expectations... And Just Generally Me!

This is going to be one of my more exposing posts. There's been a lot going on in my head as of late and to work through it I think I need to just put it all out there for the world, my world, to see. There are a lot of "ups" to this whole journey that I am totally and utterly aware of and grateful for, but there are also a lot of unknowns and emotional "lows" that I've been navigating as well that I don't know I've let a lot of people see.

The "ups" are overwhelming and emotionally charged in and of themselves. I am truly humbled by the out pouring of love and support that I have been experiencing. I can't accurately put into words how blown away I am by the gifts you all have been bestowing onto me. I can't help but think about whether or not I am deserving of all of this support... It's hard to accept all of this from you when I consider all of the other people out there that are in need and are so deserving that just don't have the group of loving and giving friends and family I am so blessed to have. It truly has made me consider "ego" and I've been forced to totally put it to the side, probably where it rightfully belongs.

I grew up in a beautiful family with a lot of "dysfunction" for lack of a better description, but it was very clear to me that we didn't let the world SEE the turmoil that brewed just under the surface, let alone acknowledge it or speak of it in any sort of mixed company. We all have our family rules and this was a big one for me and it has come up again during this journey... My family wishes they had the means to make this happen quietly for me, without the support I have looked for and received. I think there is a large part of our society that never puts themselves out there the way I have because it is very uncomfortable to admit that you can't do something alone. Not to mention the huge vulnerability that goes along with putting yourself out there. In saying all of that, I think we and certainly I am stronger for having put myself here and am never less than shocked when somebody unconditionally gives to me. It is amazing what I have experienced in such a short amount of time.

If I could I would return all of the dollars and cents I've received if they were needed by anyone I loved and trust me when I say each and every one of you are part of the list of ones that would receive... My cup is full and pouring over, without you, I do not know who I would be. For that my friends I sincerely and humbly thank you, heart in hand, so to speak.

The "low" point I referred to is hard to acknowledge for me. Again because it is a demon that keeps rearing its head, past and present. I have a HUGE fear of disappointing you all and although I have said and stand firm in my goal of NOT PROGRESSING it is hard to ignore the overwhelmingly amazing results that many are enjoying from this procedure. One of my good CCSVI friends came back from her experience and we coined the phrase "circus clown" to describe the anticipation that everyone had for her to come back and start performing her "circus" tricks, or at least her improvements which were small to some, but HUGE to her. The closer I get to my date and the more support I receive the more I have to keep reminding myself that there is no right or wrong outcome. That whatever will be, will be. But like anything in life the unknown is a bit terrifying and I think this is only amplified by your generosity... Not because I don't appreciate it, but I think I'm not comfortable with the idea of ever being the "sad" clown. No one goes to the circus anticipating to see them! Again, I know and acknowledge that this is my stuff and in no way want to make it seem as if I think that these pressures have been placed upon me by anyone other than me. But the feelings and the tears are still there over this, just below the surface.

As I acknowledged earlier in one of my posts; I'd be lying if I didn't say I had hopes about the outcome of all of this. I think these thoughts have amplified themselves because I can see changes and progression on almost a daily basis at the moment and it shakes my otherwise independent nature to the core. I don't want to be a worry in my families mind... I don't want to give up any part of my independence or give up on any other parts of me and my life. The odds are stacked against me in this regard and that is scary to this girl. At 33 years old I am fighting against the idea of the wheelchair having to become an adapted part of me and yet can comprehend the freedom it might also give me. THAT IS TERRIFYING TO ADMIT FOR ME! I've accepted and morphed a lot in this life and I'm open to the fact that this might be a continuing part of me and my journey. I am the master of looking at different situations and after going through the emotions, breathing and saying to myself and anyone around me; "it is what it is and it will be what it is going to be". But I sure am pulling for the idea of having to adapt to more energy and retraining of my body to better assist in its recovery than I am with the idea of settling into anything less than me... And I'm struggling with letting go of the outcome and unsettled with the fact that I don't even have a clue what might be on the otherside of this angioplasty door. Everything in unknown at the moment to me... And it's a bit of an unsettling place to be.

I know I'm not far away from all of the answers and I am blessed to be close to reaching all of my goals in regards to funding this dream. I also pause and pinch myself every now and again with the thought that I will be liberated almost a year from the date that I first got introduced to the procedure known as "liberation" and the amazing Dr. Z... Thank you for coming along on this journey with me and for the hope that you have all given to me! Your love picks me up during my lowest moments and reconfirms to me that it will be what it will be, but no matter what, it won't just be me...

Thursday, October 21, 2010

Before Video's For You All to See...

It is customary for all of us heading out of country to do these before videos so that we can measure improvements after Liberation because no medical teams are doing that here in Canada...

Tuesday, October 5, 2010

Got the Date... And Other Stuff

I got my date! November 12th, 2010... The day that it could possibly, maybe, hopefully all change. The question is how do I focus on anything but the date until then??? And what is safe to hope without building myself up to fall?

I've said since the beginning that all I'm looking for is to halt the progression of this crazy train, which is true. However, day after day I see the amazing outcomes that some of my MS friends are having from this procedure and my mind starts to race and my heart starts to beat faster and I dare to think; could that be me? Could that outcome be part of my story? PLEASE, PRETTY PLEASE WITH SPRINKLES ON TOP. And so the expectation train starts to build momentum and I try to squelch it and halt it in its tracks- to the best of my abilities anyway, I am human after all.

People keep asking me what I want to do after surgery if everything goes in the "best" case direction. This question is fair, but a bit of a shovel full of coal being slung into the old choo choo train heading to disappointment-ville. The truth is, I haven't let myself go there that much. But I'd be lying if I told you I haven't let my mind go there at all. The truth is I want to be able to go hiking with my dog. I wanna ride my bike. I'd like to go skiing again cause I think I'm not done with that one. I want to wash my dishes without it fatiguing me like crazy! I would like to wake up in the morning and feel more rested than when I went to bed the night before... I do want from this procedure.

I guess the real truth is that I'm willing to settle for no more progression and a healthy vascular system... But what would you be if you didn't have little hopes, little glimmers of light at the end of the tunnel? There are so many things that I used to do and took totally for granted that I know if I did receive back, I wouldn't. I would revel in the extra moments of energy I might get back. I would love to be able to write or speak and express myself as clearly as I know I'm capable of without searching or pausing trying to find a word. I would walk my dog extra long and do tai chi and yoga without feeling clumsy and unsure of my balance and where abouts. I'd love it if I didn't have to know where all of the free bathrooms in the city are located in order to avoid embarrassing accidents. I'd love to meet a guy and not wonder what he thinks of my cane and when I should bring up the whole MS thing... Or heck go to an interview and pray they don't pass me by based on that elephant in the room.

Do I have my date? YES! Am I excited? You better believe it! Do I have hopes in regards to healing? Obviously... Am I for all intents and purposes still humanly scared and worried? Yeah... I sure am. My whole life I've been concerned with not disappointing people and I have to tell you, since you've become apart of this journey with me... I really don't want to let anyone down. And so with all of that said, I guess the best way to sum up what I'm feeling and thinking is to simply say I reserve the right to be skeptically optimistic. And so it is.

Thursday, September 2, 2010

Let's Talk About Fatigue Baby!

I've decided to hit some of the connecting, larger issues as blanket posts... Hope you don't mind or think that you are being cheated in anyway, but some things deserve their own section and fatigue is definately one of them!

We've all been tired in our life; I think I can make that generalization very safely. But I don't think that all of us have experienced F-A-T-I-G-U-E! It is the invisible plague of MS... Truely. No one can see it and no one can understand it unless they've experienced it, it's truely one of the most debilitating effects that I've tried to tollerate and persavere through since my diagnosis and that's saying something!

Imagine your body hurting, it's so tired.... Your muscles ache ALL the time and feel as if they each weigh about 420 pounds a piece. The most seamingly simple of tasks begin to look like Mount Everest itself to you. And people always say to, very helpfully; "take a rest, have a nap." The issue is there is there really is no coming back from it. You could sleep for 32 hours straight and open your eyes only to realize you are just as tired and sore as you were when you went to bed. It's awful!

The worst part about it is there is also a lot of external perceptions that start to go on around you. There are those who can look from the outside in and think that it's "lazyness" and make stories up about it to that end. The truth of the matter is that you would do it, if you could do it... But even the coulds feel like weights around your ankles.This doesn't help with the isolation that MS can bring on either because you start to think of yourself as a BIG ass drag!

Fatigue is the kind of symptom that I wouldn't wish on my worst enemy... Well ok, truthfully, maybe my worst enemy could take on the fatigue for me, but to be honest it takes too much energy to actually wish it upon them! This silent, invisable side effect of this MonSter called MS is the one that makes it impossible to deal with the other parts of this disease. My leg drag wouldn't bother me as much if I had the energy to get up and get my day going. My numbness wouldn't feel as damning if I had the mental alertness to think about every step and all the fine motor skills that I want to execute in a day.

Fatigue is the ugly "F" word of MS. Fatigue is the thing that is almost impossible for everyone else to understand. Fatigue is actually a battle ground; on going and all consuming. Fatigue is the invassive, undetectable killer of this disease.

Again I refer to my "champion" spirit- oh wait... I can't find it right now, it got swallowed up by that F'ing traiter FATIGUE!!!!

Sunday, August 8, 2010

My Life... So Far... Part 10

Going to school full time was good for awhile. It was interesting because I became very aware of my cognitive capacities and changes during this time. I never thought I had any cognitive changes... But man let me tell you, there sure was!

I got wrangled extra time for exams, taking them in a quiet place with less people in the room. But I was still aware that I wasn't functioning the way that I normally did; back in the day. Re-education became more and more of a challenge and affording to do it became harder and harder too. I charged my credit card like crazy just to make ends meet... Not the smartest choice in hindsight, but the only way to get through it with my pride in tact at the time.

Part of my program was co-op based, I quit my job at the salon when I got my first placement with a huge national insurance firm working in their H.R. department. I helped with the interviewing and the recruitment process all over Canada from the comfort of my Calgary desk. Phone interviews and reference checks were some of my main responsibilities and I was encouraged by how much I LOVED the work I was doing!

Then one morning I woke up and was totally alarmed by a brand new symptom that I'd never dealt with before... My left shoulder was rolling and twitching uncontrolled by me! I got ready as per usual and headed into the office thinking once again that this would just sort itself out. DUHH! Denial may not be healthy, but it's useful sometimes when all you want to do is get through the day.

I got into the office early enough that I didn't have to face anyone. I went straight to my little pod, hidden by the dividers that separated me from my co-workers and vice versa. My Mom was my first phone call of the day; she's always had an un-natural ability to call whenever something is going wrong. Hearing her voice at the other end of the phone released the massive buildup of anxiety that was pulsating through my body and mind with every roll of my shoulder; I burst into tears... I'd come to terms, begrudgingly, with the visual cue that my cane brought with it- but another physical abnormality felt like Mt. Everest itself!

I was so overwhelmed by the situation that I hadn't heard the arrival of one of my co-workers on the other side of the divider. After I hung up the phone with my Mom with strict instructions to call the MS Clinic immediately, I heard the shaky voice from the other side; "are you okay Shara?" CRAP! What the hell was I supposed to say?... "Yeah." I said shoving down my tears and shaking my head no the whole time.

I called the MS clinic... The Practicing Nurse was available to see me four days later, on Thursday, otherwise an appointment with my neuro was going to be a 3 month wait. To be honest I was excited that I didn't have to deal with "him". We hadn't been getting along very well at all as of late. At my last three appointments he had been pushing a new treatment option; chemotherapy! I knew I was not ready for this radical line of treatment the side effects included everything you try to avoid in life; congenital heart failure, reproductive issues and the cherry of them all... DEATH!

On my last visit I got really upset and I demanded that the doctor open up my chart and make a BIG note that I was not interested in this line of therapy and that if that changed at all- I'd be the one to bring it up again. In other words; STOP OFFERING IT AS A FREAKING OPTION! It's not an option, I'm not willing to look at it as a option until EVERY other option has been visited and deemed ineffective. I ended up getting pretty heated about the whole thing and almost fired him right there on the spot!

During that same visit the doctor, realizing how upset I was, shuttled me down to the designated nurse I was supposed to respond to... She became alarmed when I got emotional and started to root through the files in her desk. She turned to me and handed me a pile of pamphlets; they were for the 4 hour suicide hot line! WHO THE HELL HAD SAID ANYTHING ABOUT SUICIDE?! DIDN'T SHE GET IT; I WAS TRYING TO AVOID DEATH! I ended up leaving from that appointment thinking and feeling like I wasn't entitled to think and feel the way that I did... So the suggestion of seeing the head nurse was a welcome one.

My Mom drove into town to go to the appointment with me. She stayed with me the night before and actually tried to physically stop my shoulder from moving... I'm sure it was hard to watch, but that thinking didn't make sense to me. If it was as simple as baring down on my shoulder, I would have done that days ago.

The nurse was concerned when I got to the clinic. She said this type of a "tick" was not a "normal MS" one. GREAT! I can't even do this freaking disease right! She told me she was going to go and get my neuro who was in the clinic that day, I quickly gave her permission, but did tell her to give him strict instructions not to mention the chemo thing, AT ALL! He came and he took a look himself. His suggestion; botox. Paralyse the nerve and then it won't flinch was the thinking. He paused for a moment and then said "and I know you don't want to talk about this Shara, but"... I turned to him quickly as did his nurse and said "don't you do it, don't you go there!" The nurse assured him that the subject had been thoroughly covered. What a dick! Was all I could think.

After he left, my nurse practitioner mentioned that she didn't necessarily agree that the botox should be our FIRST line of attack. She suggested Solu-Medrol; a high dose steroid drip that I would have to come into the hospital to get every other day and of course, some time off work!... Great. That's what every employer wants from their 3 month co-op student. URGH!

Mom was concerned because she and my sister were due to go away to Montana for a week, she immediately suggested canceling and I immediately told her "NO". Dad was around for the last of the drip appointments, she and my sister should totally go. I hated the idea of being the cause of any plan changes.

Solu-Medrol was a crazy ride for this girl! This drug, like all others comes with side effects it causes; sleep deprivation, massive weight gain, headaches and heartburn, oh and most importantly for this story: "euphoria". Which don't get me wrong was a way better alternative to the depressed state I'd been in and out of, but it comes with it's own set of dangers...

My sister and my Mom were away the day I got my last drip and Dad drove me and picked up some Tim Horton's soup for me for lunch on our way home. I never ended up touching the soup... Instead the moment I walked through my door I noticed a few finger prints on the draw that housed my cutlery. I got the cleaning products out from under the sink and started spraying and wiping like a crazy person. I was emptying every single shelf and drawer, climbing up on top of the fridge and getting the bits up there that hadn't been touched in ages. I kept trying to sit down between chores, but I could not stop, my body had a mind of its own! After I was done that, I started washing down the walls in my condo- and then suddenly ran out of spaces to wipe! I took a momentary bathroom break on the main floor... We'd been meaning to re-paint it for awhile. I looked around; well why not now????

I went to the basement and found a can of paint, I don't rightly know how long it had been there or what it had been used for prior. That kind of detail failed to matter. Now for a paint brush... I found a sponge ended paint brush and decided it was good enough! I threw the top off the can and madly started painting- there was no plan, no start or finish point; to be honest I don't have a clear memory of even doing this at all.

I did however realize that I had no idea what the hell I was doing when I awoke from my coma like crash the next morning... I awoke to a REALLY clean house and a massacred bathroom. The bad news being even worse because there was no way I could repeat the energy of yesterday, that day... And of course my Mom and sister were due home that very evening. This was going to be fun to explain!

Saturday, July 24, 2010

Baggage and Dating...

Being a woman of a certain age, means that there are flutterings of the heart that occur. I would notice men of interest all the time. The thing was I very seldom had the confidence to pursue them. I had a preconceived notion of the "preconceived notion" that they would have of me. I was never itty-bitty, ski racers rarely are. I didn't fit into the quote unquote, "normal" package. And now I had this extra baggage... The MS and cane baggage to contend with.

Don't get me wrong, I dated... I dated long-distance boyfriends that I built up in my mind to be who I needed them to be. And quite un-proudly I socialized with other peoples boyfriend's who were unhappy and unfulfilled with the pretty little airheads they had in line. I justified all of this easily enough though; "I was protecting everyone else from my stuff and at the same time myself from the more than OBVIOUS rejection that would ensue." I thought at the time I was doing the world a favor and so what if it meant that I had to cry myself to sleep every night while the guy I was a pinning and connecting with had a pretty little prize to cuddle up beside?

The truth is the further I got into this disease process the harder it was to maintain ANY relationships. Friends enjoyed the "good time", "persevering" Shara... But no one knew what to say on the other end of the line as I cried and spoke about the humiliation of wetting myself and falling down like a drunk in public, or the fact that my body hurt so bad some days that I wanted to die. Those were things people clearly didn't want to hear and I didn't want to upset them by harping on it after I pin-pointed their discomfort. They didn't know how to cope or what to say to make it "okay".

The fact of the matter is this, for all of you "normal's" reading this blog; progressively sick people aren't looking to be saved, or pitied, or worshipped for being "so strong". The truth is that people; healthy, happy, sick or mad people, just want to be heard. I pulled back a lot in life because I didn't want to upset anyone. I considered how they would  feel, rather than telling them how I was feeling or what I was thinking.

When I first got my cane the thing I remember most, was the interest that total strangers took in it. The hostess at the restaurant that would ask me as she seated us "why I had the cane". Being the ever so considerate invalid that I was I created quick remarks to guard them from feeling foolish for asking the invasive question before us; "you've heard of beating them off with a stick?... (Comedic pause) ... Well this is my stick." HAHAHAHAHA.

In regards to dating I thought I had figured out the perfect scenario when I actually picked up a guy after giving an MS based speech one day at a fundraiser for the Jimmy Heuga Foundation's Snow Express For MS. We dated for a few months and I thought it was perfect because EVERYTHING was already on the table. This guy knew I had MS. More than that he was at least a little educated about what that meant. However like most people I think the "idea" of dating someone with a progressive disease, didn't quite match the "reality" of dating that same individual. He was out the door before the third day of "OUR" first attack.

Am I sad I don't have a significant other in my life? Yes. Am I extremely tired of carrying the load on my own everyday? Yes. Do I NEED a man to make my disease "better"? NO. Will I EVER make the mistake of putting someone else's comfort about my disease before my own again? No. Did it take thousands of dollars in counselling to get me there? Yes... Do I now have beautiful, supportive friends that I can turn to? YES!

But at the end of it all, can I now look at the hostess and hand off the responsibility of the awkwardness of the situation and say; "I have MS." And look down at the menu as she pauses before walking away? ABSOLUTELY, POSITIVELY, YES! And... I might even go back to that same restaurant again. :)

Friday, July 23, 2010

My Story... So Far... Part 9

Being a manager is not as fun as being a stylist... I mean don't get me wrong, there are aspects that I really enjoyed and I was so grateful to have the position at all. BUT, I really didn't like counting every single thing in the salon and spa for inventory EVERY month and the accounting jobs; I mean I am a detail oriented person, but that was just mean!

It turns out though that I did really enjoy setting up interview questions, training and development initiatives and plans, retention strategies and policy and procedures manuals even... I really liked EVERY aspect of the human resources tasks I got to perform. I knew going back to school was going to be something that needed to happen, so here was my new calling, my new destiny!

I enrolled part-time to start. I knew that Mom and Dad couldn't afford for me to be a "professional" student. They gave as much as they could, funding my little sister's University education at the same time. My job stayed the way it was and I added school in the evenings a couple times a week to start. At first that wasn't bad... I think the adrenaline of being back at school and learning just kept me operating at top speed. Then I crashed. And crashing never looks pretty, no matter how you try to dress it up.

My fatigue became crippling, I felt tired all the time. I would get crazy headaches and my left hand was numb so working on my computer became increasingly challenging.

I talked to my employer once again and explained I was going to have to cut back hours some more. We decided to start to look for another manager and I would pull back and just work the front desk a few times a week and all day on the weekends. Looking back I can't believe how lucky I got to have such an understanding boss for all of those years and transitions in this life.

The more I did school, the more I wanted to complete it as quickly as possible. I hated being a drain on my parents. More than that, I hated being in limbo. I didn't want my illness to define me and I certainly didn't identify with my illness. My neurologist appointments were getting harder and harder for me to take. The doctor I had liked was now long gone, he went to a small island in Scotland to pursue his MS research. I now had a new neuro with the bedside manner of a rock.

He enrolled me in a program where I'd go to see Occupational Therapist's and Psychologist's and (good times) Urologist's. This of course really helped the fatigue because now on top of working AND going to school; I was fitting in numerous doctors appointments into my schedule as well. But I thought, "hey, at least it's something none drug related that I can do."

The O.T. was really helpful and totally relatable for me because she was only a few years older than myself at the time. The Psychologist wasn't as smart as me, so I thought my way in and out of our appointments all the time and really didn't receive very much insight at that point in time. The Urologist was humbling... I cried like a baby the day I found out that I couldn't drain my bladder on my own accord anymore. I couldn't believe I was learning how to use catheters and strategies about bathroom breaks and frequency all the time.

The peeing thing hit me hard. I mean no one even had to teach you how to pee... You just did it. You knew how to do it before you ever even took a breath! And here I was, working at it. Finding out it wasn't as easy as I'd been lead to believe. It was too much to take in- this one, MS, was below the belt!!! Pun, totally intended!

Friday, July 16, 2010

My Story... So Far... Part 8

It wasn't long until I realized that I wasn't going to be able to go back to my highly glamorous shiny new career as a hairstylist. A little time away had cleared that fog. I sat down with my Mom and my boss to give him the news, after a follow up appointment with the MS clinic clinched the fact that my body needed more time to heal.

I cried as I told my boss that I wasn't going to be able to follow through and that my best intentions and passions aside, I couldn't afford physically to pursue hairstyling. I was devastated, crushed. This is not the "champion" way I had grown up reaching for. I felt like I was giving up and letting the team down. This wasn't me- this was not in my nature. This flipping disease was robbing me of a lot more than careers and physical abilities. I was disappearing and I had no idea how to hold on; try as I may!

And thus that became the question; who am I? How does this dis-ease fit into my life and myself concept? Why? Why is this happening to me? And what the hell am I going to do next?

I went out to the family cabin in the East Kootney's to get away and heal. I sat by the creek with my journal writing everything and anything I felt about what had gone on. I cried, I laughed, I drank too much and ate too little. And I worked on putting the pieces together again. I tried to normalize as much as possible, but to be totally honest I had no idea what the heck "normal" was supposed to even look like.

I watched as the handwriting in my journal changed. My artistic hand writing and printing turned into two line consuming, bulleted notes. My fine motor skills were getting harder to control and the high dose steroids I was on were getting harder to choke back. This was not "me". This was not who I was or ready to be. I was 24 and unable to relate to anything my peers had to talk about. I was 24!

The phone rang one afternoon. It was my old boss... We went through the normal pleasantries one does. The "tough" question "how are you?", my most challenging nicety was thrown out there.

"Fine, relaxing", was my reply- even though it wasn't even close to the truth. He went on to tell me how much I was missed, and how the team was just not functioning the way it had before without me. I took this in with a breath I refused to exhale, as big crocodile tears rolled out of the corner of my eyes. It was the perfect thing to hear at the perfect moment. I thought my days of being able to offer something to an employer were done. My boss asked me back. He created a new "Administrative Manager" role for me. He went on to tell me to take my time, but to know there was something waiting for me when I was done.

Meaning! I had value and meaning again... Obviously I wasn't worthless if someone like my old salon wanted me back. I felt an overwhelming need to get better! To get back! And I put my mind to it... Hoping my body would eventually catch-up. COME ON BODY CATCH UP!!!

Monday, July 12, 2010

My Story... So Far... Part 7

It wasn't easy faking it through everyday like I had it all together; it takes an awful lot of energy actually. I'd been home for months and still couldn't reclaim my lower legs and my feet. I was taking a BIG fall at least once a day and I never knew how many pieces of glass my feet could attract until I couldn't perceive anything with the built-in warning system we all have. It was getting a little bit crazy! Bruises and  cuts were daily occurrences now; bumps in the road felt like mountains...

My Dad kept suggesting a cane to make things easier for me and safer, but being of the same stock as him I kept pushing that suggestion away. A cane, in my mind, meant that somehow this change had some sort of permanency; as if I was inviting this symptom to hang around by buying it its own accessories. I did not have time to buy a cane and find somewhere permanent to file this into my life- it WOULD go away... Wouldn't it?

One day I rushed from the lower part of the salon to the spa which was located upstairs, inorder to retreave something or another a client had requested. I remember clearly telling my legs to move and keep up with me, but they just weren't there and before I even had a chance to realize that, I took a huge tumble down the three stone steps to the entrance of the spa. As I hit the floor, it was like I hit the sudden realization in that moment that I couldn't pretend anymore. My friends and co-workers came rushing to my aid having heard the thump of my landing. I was crying, uncontrollably. I kept trying to stand up but it just wasn't happening on my own accord. Between the tears and the numbness I couldn't figure out how to get myself up off of the floor. One of my co-workers who happened to have the aesthetic of a body builder he rushed up and in to pick me up off the floor and gently placed me on a bench meant for guests.

I was humiliated, deflated. I had to give into the fact that I couldn't do, once again, what I was used to do. I had some water and a really good cry and my boss asked me to "follow" him into the office, as he supported me with his free arm and took me to the back. We talked about what exactly was going on with me physically. My MS was not a secret having been at the salon for over 3 years and apprenticed under his trained eye. He could see the shakes and tremors that I was a pro at concealing and technically accounting for. He was like a big brother more than a boss, always looking out for me. He told me; he certainly didn't ask me, to take some time off. I reluctantly nodded, knowing that no work meant no money in my field. He picked up the phone and instructed the desk clerk to reschedule my week as I cried a little more.

I couldn't believe this. I couldn't believe that already this disease was inching it's way into my new found passion and career! I loved what I did and I had the potential to be EXTREMELY good and successful at it. Now I was mad; mad at myself, mad at my boss, mad at my body, mad at my doctors, mad at my sister, mad at the world! No one was safe, I was MAD! I took my bosses "advice" and took the week off. I went to see my neurologist again, this time he suggested more than a week off and some high dose steroids again. GREAT! Did I mention I was mad at him?!

I knew that leaving for more than a week was like occupational suicide to a new stylist trying to build a solid and loyal clientele. It was hard enough having to disclose my "situation" every time someone sat in my chair and started to stare at my slightly shaky hands as I worked my way through the hundreds of  foils I was expertly placing in their hair...

My week became a month and my month became; short-term disability... Once again I was re-evaluating my life and my wants and my needs. In the meantime I went shopping for a cane with my Dad. We found a Lucite one that I thought of as being "invisible"... At least it was in my mind.

Wednesday, July 7, 2010

My Story... So Far... Part 6

I've been putting off writing this next entry... I still have a lot of resistance to the compounding episodes that played out in this portion of my life story, I think because I all of the sudden could not ignore the uninvited guest called MS and it stopped fitting neatly at the back of my closet and became much more of my day to day reality.

As I mentioned my Mom and my Step Dad moved out of the city and part of that equated into my Mom selling her little business that could and deciding to celebrate by taking us all on a family get away to Las Vegas; sounds pretty good so far, I know. The thing about Vegas, is that it's hot... It doesn't matter what time of year you go, it's a desert and it is there for HOT. A little known fact to those who do not have MS is that there is a HUGE sensitivity to heat that comes with the disease. In fact I can say from the time of birth that I've never been a big fan of the heat, I was always trying to avoid it. When my Mom and my sister were sun goddesses reading in the sun when I was a wee thing, I had no choice but to be in the pool. If I attempted to lie in the sun with the girls I would feel "weird", which is the most eloquent way I can describe it.

Anyway, we arrived in Vegas and the Strip felt like it was on fire; not only were we in the dessert, but there was also a heat wave- EXCELLENT! The good news when it comes to Vegas is that most of the time you can survive in-doors within the air conditioned havens of the hotels. We were having a BLAST. Foot long margaritas and karaoke video's being made; all the fun that makes Vegas, Vegas. The second night in Vegas was a big night! Mom had found out that none other than Mr. Tony Bennett was playing while we were in town; my Step Dad's favorite. We got dressed up and went out for dinner after a day of site seeing and busy exploring and then made our way to Cesar's Palace for the show.

The concert was nothing less than "marvelous and splendid" as my Step Father would say, it was a perfect end to a perfect day. We went to walk out of the hotel and make our way back to our own and as I stepped from the curb, like I had a million times before, my foot came down and felt like it just kept going and I couldn't find the security of the ground and I took a spill. Before I knew it I was lying on the ground, looking at my family, who were rushing and looking over me. I couldn't feel my legs...

My Step Dad helped me up and I leaned up against the huge fountain as I stood and assessed what the heck was going on. I didn't have a safety pin like my medical team used to expertly prick me up and down, but in rubbing my legs I was pretty sure that they were for all intents and purposes gone below my knees. Yeah for me... The hairstylist who was always on her feet. I sat there awhile and shed a few tears, unable to really articulate what was going on for me or how it happened so fast.

My family supported me into the cab and over to the MGM where we were staying. I felt like a drag. Even though it was my family surrounding me, I was embarrassed; my body was bruised but more importantly and to the point- so was my ego. I went straight up to the room and laid down to sleep. "Why now? Why here?" Were the questions bumping around my head as tears quietly rolled down my cheeks, I was rolled over on my side so that my sister, who I was sharing the room with, wouldn't see.

In the morning I woke to Mom at our door. My sister answered it and she announced the "new" plan of the day... I was sure she hadn't slept much herself, knowing the way that she worries and she confirmed it by telling us that she was the first one down by the pool that morning to book a cabana. Mom thought a quiet day was in order and I think in her head might "fix" me right up, but she knew I couldn't tolerate a day in the heat, soaking up the exorbidant sun so she got a cool cabana in the shade that sprayed water from little misters along the  roof edge.

The day was wonderful, but the rest and the mist and the rays didn't bring back my legs... I went home and EVERYONE kept suggesting I get a cane. HA! Can you believe that? A 25 year old woman with a cane?! Yeah right. "Wall walking" became my new championing sport; holding my hands out and touching the wall as I walked with my eyes always down. The smallest disparity in the lay of the land would mess me right up mind you.... This was crap! This was definitely not what I signed up for; remember the initial neurologist that diagnosed me said "one attack within your whole life"... I was beginning to think that he didn't know what he was talking about, Robin Williams look-a-like or not.

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."