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.
Tuesday, October 5, 2010
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!!!!
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!
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!
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