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!
Sunday, August 8, 2010
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. :)
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!
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!
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