I don't feel like mentioning how terrible I feel. Quite frankly, I'm a bit tired of it. Achy, exhausted, nauseous, and a bit foggy sums it all up. I don't want a needle tonight, because that means that tomorrow, I will most likely feel rotten.
The frustrating part is that today, I was supposed to be "ok", just a bit tired...but that is not the situation. We have also concluded that the day following the injection I experience an injection-related migraine.
The only good news today is that I am finished with the weekly blood tests; now I only have to go every other week. woohoo.
I have to take my needle out of the fridge now,
Emily
*I'm starting to see why a "return to work plan" is not in the works right now. After 21 months of not being in the workplace, returning while feeling distracted and burdened by these physical issues would not be ideal. But I am excited to recognize that my brain is wrapping itself around the concept...all on its own. No pressure.
goes with the territory
Posted in on Wednesday, March 12, 2008 by Emms
ugh, I feel as if I am wearing knee socks! I don't own knee socks! I don't like knee socks...real or otherwise! I always wear socks that just slouch around my ankles...never to be pulled up.
And last night, between midnight and 1 am, I was lying in bed (with the intention of falling asleep) thinking about how I should be the one to re-work my job description...since I know my strengths, and employers and insurance companies don't. And I had some numbness in my mouth, and under my chin! cRazY!
Emily
*feeling like wearing knee socks is when I have a pronounced band of tingling/numbness around each leg, just below my knee...and a slight feeling of something on my skin below the band.
And last night, between midnight and 1 am, I was lying in bed (with the intention of falling asleep) thinking about how I should be the one to re-work my job description...since I know my strengths, and employers and insurance companies don't. And I had some numbness in my mouth, and under my chin! cRazY!
Emily
*feeling like wearing knee socks is when I have a pronounced band of tingling/numbness around each leg, just below my knee...and a slight feeling of something on my skin below the band.
new career
Posted in on Monday, March 10, 2008 by Emms
Jason and I have gotten into the habit of having him read my posts before I publish them. So if you ever see a grammatical error...it's wasn't me! He also reads them at this time, because if he doesn't, I don't remember to tell him that I did a post. I know what you are thinking...why should I have to tell him...why can't he look like everyone else does. Well now I know why...
Jason is too busy doing the following:
1. conquering my high score in Tower Blocks on facebook.
2. conquering my high score in Blocky on facebook.
3. conquering me at Scramble on facebook.
But that's ok, because when I'm not sleeping...and he's not on facebook...I'm conquering him at Cribbage. I'm also deeply involved in my hobby...beading.
http://gems4jewlery.typepad.com/
This morning, Jason admitted that I will never be a housewife...I will be a "Bead Pimp"*.
I have an empire to create....
Emily
*this is all wishful and positive thinking. Thank goodness that I do have beads...I can't imagine not having a hobby (well, a sit down hobby). I would have surely gone cuckoo from sitting here! Or maybe I should become a Master Cribbage Champion...
Jason is too busy doing the following:
1. conquering my high score in Tower Blocks on facebook.
2. conquering my high score in Blocky on facebook.
3. conquering me at Scramble on facebook.
But that's ok, because when I'm not sleeping...and he's not on facebook...I'm conquering him at Cribbage. I'm also deeply involved in my hobby...beading.
http://gems4jewlery.typepad.com/
This morning, Jason admitted that I will never be a housewife...I will be a "Bead Pimp"*.
I have an empire to create....
Emily
*this is all wishful and positive thinking. Thank goodness that I do have beads...I can't imagine not having a hobby (well, a sit down hobby). I would have surely gone cuckoo from sitting here! Or maybe I should become a Master Cribbage Champion...
a different kind of struggle
Posted in on Sunday, March 09, 2008 by Emms
Today hasn't been too bad of a day for me. Unfortunately, I have noticed the return of the "wobbles" a little too often lately, and even the odd "short ciruit" feeling. Despite feeling a bit "out of sorts", I completed some housework and beat Jason at two games of Cribbage. I tried to rest before dinner, so that I wouldn't be too tired to chew and swallow (doesn't that sound ridiculous!?).
I managed to turn my brain off for a short bit while lying down, but I mostly just thought about what I do in a typical day. I have felt the need lately to look down the road, as well as ponder what my purpose in life is. I need something to work towards.
I'm getting myself into a bit of a "thought-traffic" jam here, because I seem to be tinkering with two different post topics...my future in the next six months, and my future in the next forty years. The challenge is that both have been on my mind lately, and they are linked.
Last week, I spoke with my case manager regarding my long term disability situation. In her words, "I can't hide my head in the sand", and I should know that the time is coming that my claim may end. The magic date for this is October 20, 2008.
I'm not too concerned with the details of that reality right now, but it certainly is a strange feeling that doctors and who else knows, will be deciding my future. Don't get me wrong, I recognize that I do have some control...but only if I say I'm returning to the workforce.
If I could return to work, I would. At this time, I don't know what I could do in the workforce. Sometimes when Jason and I are out, I find myself imagining myself working where ever we are. Inevitably, I end up telling myself, "You couldn't work here". I seem to have an understanding of what things I can and can't do. Or maybe it's a fear, rooted in what I couldn't do six months ago, so I don't bother to do it now. Or maybe I'm afraid to work anywhere because I would no longer be what I consider to be good enough and "reliable"...therefore making me a sub-par employee.
This is starting to sound like the future, and that isn't where I wanted to go with this. What I wanted to tell you is how Jason and I realized that come October, I could be on permanent LTD. What would I be...if I was not working? Jason had the answer right away...
"You'd be a housewife!!!"
I find this funny. I'd be a stay-at-home wife! We would no longer be D-I-N-Ks...I think. I wouldn't be a full time mom...I'd be a full time wife. Does the full time wife get respect in society? What a change this would be to everything that Jason and I know! Things wouldn't be that much different from what they are now...except for a sense of permanency. Would I finally feel settled? content? I'm sure that the gossip'ers would have a heyday! (oh, don't let me go there!)
Ok - that's enough for now. I just thought that I would share more of my "deep thoughts" with you.
Emily
I managed to turn my brain off for a short bit while lying down, but I mostly just thought about what I do in a typical day. I have felt the need lately to look down the road, as well as ponder what my purpose in life is. I need something to work towards.
I'm getting myself into a bit of a "thought-traffic" jam here, because I seem to be tinkering with two different post topics...my future in the next six months, and my future in the next forty years. The challenge is that both have been on my mind lately, and they are linked.
Last week, I spoke with my case manager regarding my long term disability situation. In her words, "I can't hide my head in the sand", and I should know that the time is coming that my claim may end. The magic date for this is October 20, 2008.
I'm not too concerned with the details of that reality right now, but it certainly is a strange feeling that doctors and who else knows, will be deciding my future. Don't get me wrong, I recognize that I do have some control...but only if I say I'm returning to the workforce.
If I could return to work, I would. At this time, I don't know what I could do in the workforce. Sometimes when Jason and I are out, I find myself imagining myself working where ever we are. Inevitably, I end up telling myself, "You couldn't work here". I seem to have an understanding of what things I can and can't do. Or maybe it's a fear, rooted in what I couldn't do six months ago, so I don't bother to do it now. Or maybe I'm afraid to work anywhere because I would no longer be what I consider to be good enough and "reliable"...therefore making me a sub-par employee.
This is starting to sound like the future, and that isn't where I wanted to go with this. What I wanted to tell you is how Jason and I realized that come October, I could be on permanent LTD. What would I be...if I was not working? Jason had the answer right away...
"You'd be a housewife!!!"
I find this funny. I'd be a stay-at-home wife! We would no longer be D-I-N-Ks...I think. I wouldn't be a full time mom...I'd be a full time wife. Does the full time wife get respect in society? What a change this would be to everything that Jason and I know! Things wouldn't be that much different from what they are now...except for a sense of permanency. Would I finally feel settled? content? I'm sure that the gossip'ers would have a heyday! (oh, don't let me go there!)
Ok - that's enough for now. I just thought that I would share more of my "deep thoughts" with you.
Emily
Test the Nation
Posted in on Saturday, March 08, 2008 by Emms
Let's change the subject...
Do you remember Test the Nation....
There was a new episode that aired on CBC in January...Test the Nation Trivia!
Jason and I just completed two rounds in the Mental Gym...
Emily Round 1: 50%
Jason Round 1: 40%
Emily Round 2: 30%
Jason Round 2: 40%
Emily Round 3: 60%
Jason Round 3: 40%
These questions are tough! I'm embarrassed that I don't know more about current events!
You should give it a try:
http://www.cbc.ca/testthenation/episodes/trivia/mentalgym/index.html
Don't be shy...let us know how you did!
Emily and Jason
Do you remember Test the Nation....
There was a new episode that aired on CBC in January...Test the Nation Trivia!
Jason and I just completed two rounds in the Mental Gym...
Emily Round 1: 50%
Jason Round 1: 40%
Emily Round 2: 30%
Jason Round 2: 40%
Emily Round 3: 60%
Jason Round 3: 40%
These questions are tough! I'm embarrassed that I don't know more about current events!
You should give it a try:
http://www.cbc.ca/testthenation/episodes/trivia/mentalgym/index.html
Don't be shy...let us know how you did!
Emily and Jason
monster in my bed
Posted in on Saturday, March 08, 2008 by Emms
Oh boy - here it comes.
By "IT" I am referring to the little green monster that comes to visit the day after the injection. Green, as in, the "yucky" green, not the "envy" green. The unwelcome monster sneaks into my body while I'm asleep, the next day leaving me achy and exhausted. The mess this monster makes seems to be getting bigger each day.
Thursday, I was a bit achy. I phoned the Multiple Support program to ask if maybe I was imagining it. Nobody had told me, nor did I read anywhere, that the side effects would carry on into the next day. I thought that the whole point of having the needle before bed was that you would sleep through any nasties! Sure enough, this is all normal...and an "anonymous report has been made to Health Canada regarding the side effects that (I) have reported". I wonder if that particular batch of hamsters will get fired?
What I recognized today, is that my experience so far has been pretty tame when compared to what I have read. I need to find the physical strength to go about my business despite the body ache that stretches from my neck to the tips of my toes. But that wasn't going to happen yesterday.
In the morning, after having 10 straight hours of good sleep, I was fatigued after being up for one hour. That fatigue scares me: it is an exhaustion of my whole being. At that moment, I don't want to be alone, but I'm not good to anyone who is here either. I run through a list in my head of who I can call when Jason is back to work, and decide that if I feel the same way when I wake up, I'll make the call. But, after a nap, the sensation of complete exhaustion has been replaced: the mind is alert and refreshed, just not the body.
I'm off to stare at the television now...
Emily
By "IT" I am referring to the little green monster that comes to visit the day after the injection. Green, as in, the "yucky" green, not the "envy" green. The unwelcome monster sneaks into my body while I'm asleep, the next day leaving me achy and exhausted. The mess this monster makes seems to be getting bigger each day.
Thursday, I was a bit achy. I phoned the Multiple Support program to ask if maybe I was imagining it. Nobody had told me, nor did I read anywhere, that the side effects would carry on into the next day. I thought that the whole point of having the needle before bed was that you would sleep through any nasties! Sure enough, this is all normal...and an "anonymous report has been made to Health Canada regarding the side effects that (I) have reported". I wonder if that particular batch of hamsters will get fired?
What I recognized today, is that my experience so far has been pretty tame when compared to what I have read. I need to find the physical strength to go about my business despite the body ache that stretches from my neck to the tips of my toes. But that wasn't going to happen yesterday.
In the morning, after having 10 straight hours of good sleep, I was fatigued after being up for one hour. That fatigue scares me: it is an exhaustion of my whole being. At that moment, I don't want to be alone, but I'm not good to anyone who is here either. I run through a list in my head of who I can call when Jason is back to work, and decide that if I feel the same way when I wake up, I'll make the call. But, after a nap, the sensation of complete exhaustion has been replaced: the mind is alert and refreshed, just not the body.
I'm off to stare at the television now...
Emily
moving
Posted in on Thursday, March 06, 2008 by Emms
Jason and I decided last night that we are moving to Newfoundland - Labrador. We want Danny "Warbucks" Williams as our Premier.
What are 'ya at,
Emily
*kidding, really...just kidding. But we both did make the joke at the same time last night.
What are 'ya at,
Emily
*kidding, really...just kidding. But we both did make the joke at the same time last night.
two biggies
Posted in on Tuesday, March 04, 2008 by Emms
As of today, I am two "full dose" injections down. Not that this is a countdown...or that there is any reason to count, period. The experience has been night and day compared with the previous daily injections!
For the most part, these needles are practically a "shoot-and-go"! At 8 pm, I take two Tylenol Arthritis pills (since they are long release, and should get me through the night), and at 9 pm Jason "shoots me". By 10 pm, my legs are a bit achy, I'm tired, and my stomach is a bit out of sorts So I go to bed, and sleep it off...if there is anything to sleep off. I felt a bit "yucky" this morning, and remembered that I did on Saturday morning as well...so I am associating this discomfort with the medication.
Last night, when Jason removed the needle cap, some of the liquid dripped onto his hand...and it irritated his skin! He said that it was a bit itchy, and the red mark was still there this morning (although a bit lighter in colour). And I'm putting this stuff UNDER my skin?
*Time for a side note...Rebif is a genetically-engineered beta interferon that uses Chinese hamster ovary cells. The use of mammalian cells allows for greater human tolerance...or, ideally the body won't reject it.
At this point, these injections are far less of a production when compared to the Copaxone. I don't ice the site prior to and/or following the needle...I can cover the spot immediately with clothing, and even lean on it (arm or butt cheek)! Granted, I'm not a bundle of smiles and energy; I get tired quickly. But that sure beats crying from pain! And having the week-end off is fantastic!
I had physio yesterday...and I was awesome! Things are feeling really good right now on the "wobbly" front. As I was waiting for my turn with the therapist, I over heard the woman before me describing her "not-real sensations". Her experience is that of feeling like "being in a hammock". I wanted to poke my head around the corner and share in her situation...because I know that there is nothing relaxing or comforting about being in a hammock when there isn't an actual hammock .
Cheerio,
Emily
For the most part, these needles are practically a "shoot-and-go"! At 8 pm, I take two Tylenol Arthritis pills (since they are long release, and should get me through the night), and at 9 pm Jason "shoots me". By 10 pm, my legs are a bit achy, I'm tired, and my stomach is a bit out of sorts So I go to bed, and sleep it off...if there is anything to sleep off. I felt a bit "yucky" this morning, and remembered that I did on Saturday morning as well...so I am associating this discomfort with the medication.
Last night, when Jason removed the needle cap, some of the liquid dripped onto his hand...and it irritated his skin! He said that it was a bit itchy, and the red mark was still there this morning (although a bit lighter in colour). And I'm putting this stuff UNDER my skin?
*Time for a side note...Rebif is a genetically-engineered beta interferon that uses Chinese hamster ovary cells. The use of mammalian cells allows for greater human tolerance...or, ideally the body won't reject it.
At this point, these injections are far less of a production when compared to the Copaxone. I don't ice the site prior to and/or following the needle...I can cover the spot immediately with clothing, and even lean on it (arm or butt cheek)! Granted, I'm not a bundle of smiles and energy; I get tired quickly. But that sure beats crying from pain! And having the week-end off is fantastic!
I had physio yesterday...and I was awesome! Things are feeling really good right now on the "wobbly" front. As I was waiting for my turn with the therapist, I over heard the woman before me describing her "not-real sensations". Her experience is that of feeling like "being in a hammock". I wanted to poke my head around the corner and share in her situation...because I know that there is nothing relaxing or comforting about being in a hammock when there isn't an actual hammock .
Cheerio,
Emily
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Little bits about my life with MS
