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.
Wednesday, July 7, 2010
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.
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".
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".
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