Tonight, will be my last Rebif dose of 20%. I really hope that the theory behind titration works for me!
I have had a couple of post topics on my mind lately, but I have not transferred my thoughts to the screen. I want to share my thoughts on how, in my situation, MS has effected my family and friends. But I am not confident that I can clearly begin to describe the reality. However, I think that it is important because I want to share my experience in the most honest and thorough way, and the effect on the people in my life can appear to be overlooked if I just discuss my battles.
I also should share with you, my "hurdle du jour", which isn't just today, but everyday. I have been experiencing an increased difficulty in finding words, saying the right words, remembering things, hearing things correctly, and executing tasks (like brushing my teeth) in the same manner as I have for at least three years. I guess that these refer to cognitive difficulties. Trouble finding the right word in conversation, has been present from day one. However, only just recently have these cognitive difficulties caused stress for Jason and I, as the frequency and severity has increased.
On a positive note, yesterday, I went out in the car by myself. woohoo!
Share with you later,
Emily
bouncing all around
Posted in on Sunday, February 24, 2008 by Emms
Yesterday, I had what I would consider a good day. The week leading up to yesterday was not such a good time as my energy level was very low. I have to learn to better control my thinking regarding this "take each day as it comes" business.
I emotionally struggle with the physical come down after a good day/week. The week that Jason was on vacation, the week that we had scheduled the happenings for everyday, was quite successful for me. Now this past week, the week following the good week, I had a big zero in the energy department. So instead of allowing that, I felt guilty about it. I questioned my exhaustion...is it just boredom?...laziness?
The next thing I know, I'm bouncing around the kitchen: unloading the dishwasher, loading the dishwasher, scrubbing the sink, cleansing the counters. I even planned and almost single handedly executed supper 6 hours later! Now today, I will take it easy. Then tomorrow (ideally) will be another good day.
Despite the emotional ups and downs over my state, the stress of the unknown with the injections on Mon/Wed/Fri, and the challenging week that Jason had at work...I have barely been wobbly! I even have my eyes riveted to a novel for about a week now!
I REALLY need to stop beating myself up for having a few down days!
Emily
I emotionally struggle with the physical come down after a good day/week. The week that Jason was on vacation, the week that we had scheduled the happenings for everyday, was quite successful for me. Now this past week, the week following the good week, I had a big zero in the energy department. So instead of allowing that, I felt guilty about it. I questioned my exhaustion...is it just boredom?...laziness?
The next thing I know, I'm bouncing around the kitchen: unloading the dishwasher, loading the dishwasher, scrubbing the sink, cleansing the counters. I even planned and almost single handedly executed supper 6 hours later! Now today, I will take it easy. Then tomorrow (ideally) will be another good day.
Despite the emotional ups and downs over my state, the stress of the unknown with the injections on Mon/Wed/Fri, and the challenging week that Jason had at work...I have barely been wobbly! I even have my eyes riveted to a novel for about a week now!
I REALLY need to stop beating myself up for having a few down days!
Emily
old hat/new hat
Posted in on Tuesday, February 19, 2008 by Emms
I'm feeling like an old hat at this injection stuff...not that I have other painless injections to base this on!
Yes, yesterday's injection went as smoothly as the first one. So this has prompted me to do some more thorough research into the dreaded side effects. I feel that it is still too early to think of myself as "one of the lucky ones" who doesn't experience any difficulties when starting Rebif. According to my research, the "yucky" stuff typically begins by the first few injections. The titration (.1ml compared to the full dose of .5ml) is designed to ease the "yuckies".
If you have been reading this blog for many months, you would know that back in July, I took on a client at work. Unfortunately for all involved, this job is still going on, and I periodically must think about it: make decisions, visit the site, and advocate for the client. Now, I am thisclose to stepping away from it. I recognize that the situation is not good for me at this time (it wasn't good for me 4 months ago either). So I need to try on a new hat: the hat of a person who has done all that she can do.
Emily
Yes, yesterday's injection went as smoothly as the first one. So this has prompted me to do some more thorough research into the dreaded side effects. I feel that it is still too early to think of myself as "one of the lucky ones" who doesn't experience any difficulties when starting Rebif. According to my research, the "yucky" stuff typically begins by the first few injections. The titration (.1ml compared to the full dose of .5ml) is designed to ease the "yuckies".
* * * * *
If you have been reading this blog for many months, you would know that back in July, I took on a client at work. Unfortunately for all involved, this job is still going on, and I periodically must think about it: make decisions, visit the site, and advocate for the client. Now, I am thisclose to stepping away from it. I recognize that the situation is not good for me at this time (it wasn't good for me 4 months ago either). So I need to try on a new hat: the hat of a person who has done all that she can do.
Emily
and we've begun
Posted in on Saturday, February 16, 2008 by Emms
I have officially returned to drug treatment. After four and a half months off of drug, yesterday was my first "mini" dose of Rebif. I am on a titration schedule: 6 doses of at a lesser amount, and then into 22 micrograms. Depending on how well 22 micrograms goes, things may switch to 44 micrograms.
Yesterday was my best experience so far, when comparing approximately 210 previous injections. Jason and Corina were here for the training, and any potential drama. Much to Corina's surprise, Jason and I had previously elected her to administer my first dose. But the only drama was Corina, shaking while pinching up the skin on my arm...syringe in hand, cotton ball at the ready... and me encouraging, "It's ok. You can do it."
What I was really thinking was, "Anytime now... let's go...I'm waiting..."
And then I said, "Did you push the plunger?" I couldn't feel anything, and the room had fallen silent. I didn't even hear the dreaded ting of the needle as it was retracted.
"Yup, she's done."
I didn't notice the moment. And I didn't notice anything for the rest of the day. Well, that it isn't totally true. I had taken a tylenol prior to the injection, and spent the following eight hours on the couch, except for when I got up to get my dinner. It was then that I noticed a slight achiness in my arms. Compared to every Copaxone injection...that was nothing!
So now I have to wait until Monday for my next injection. It feels so strange. I can see how it might be easier to forget a dose on Rebif. On Copaxone, the injections were everyday, and I was often reminded of this by the lingering pain in the previous location. Not that I want to get ahead of myself...there is still plenty of opportunity for this to go sour. But so far, it feels good.
The other thing missing for me yesterday was the emotional reaction to having to go through this in the first place. There is plenty of time for that to come too, and I'm sure that it will come and go as all of the variables come into play (side effects, location of injection, overall physical and emotional condition that day, giving myself the injection when no one else is around etc).
I am surrounded by people who want to make this easy for me, no matter how difficult it is for them. I can count at least five people who would give me my injections: Jason the rock, Corina the conquerer, father-in-law Gil who will do anything that I need, Shaun-of-no-fear, and Ladyfingers (need I say more?). Unfortunately, the training session was only for Jason and one other person.
And with less injections...will they all get a turn?
Emily
Yesterday was my best experience so far, when comparing approximately 210 previous injections. Jason and Corina were here for the training, and any potential drama. Much to Corina's surprise, Jason and I had previously elected her to administer my first dose. But the only drama was Corina, shaking while pinching up the skin on my arm...syringe in hand, cotton ball at the ready... and me encouraging, "It's ok. You can do it."
What I was really thinking was, "Anytime now... let's go...I'm waiting..."
And then I said, "Did you push the plunger?" I couldn't feel anything, and the room had fallen silent. I didn't even hear the dreaded ting of the needle as it was retracted.
"Yup, she's done."
I didn't notice the moment. And I didn't notice anything for the rest of the day. Well, that it isn't totally true. I had taken a tylenol prior to the injection, and spent the following eight hours on the couch, except for when I got up to get my dinner. It was then that I noticed a slight achiness in my arms. Compared to every Copaxone injection...that was nothing!
So now I have to wait until Monday for my next injection. It feels so strange. I can see how it might be easier to forget a dose on Rebif. On Copaxone, the injections were everyday, and I was often reminded of this by the lingering pain in the previous location. Not that I want to get ahead of myself...there is still plenty of opportunity for this to go sour. But so far, it feels good.
The other thing missing for me yesterday was the emotional reaction to having to go through this in the first place. There is plenty of time for that to come too, and I'm sure that it will come and go as all of the variables come into play (side effects, location of injection, overall physical and emotional condition that day, giving myself the injection when no one else is around etc).
I am surrounded by people who want to make this easy for me, no matter how difficult it is for them. I can count at least five people who would give me my injections: Jason the rock, Corina the conquerer, father-in-law Gil who will do anything that I need, Shaun-of-no-fear, and Ladyfingers (need I say more?). Unfortunately, the training session was only for Jason and one other person.
And with less injections...will they all get a turn?
Emily
first time is approaching
Posted in on Thursday, February 14, 2008 by Emms
The "planned week" seems to be working out well for me. I am looking forward to a day "off" tomorrow. Jason and I have gone to the movies (Juno) with friends, and last night (pre-Valentine's) we went for dinner (somewhere new to us) and played 3 games of pool!
As I rest tomorrow, we will be visited by the training nurse...and I will have my first Rebif injection. The time has finally arrived. I received my Serono "welcome pack" by courier on Tuesday, and the training nurse phoned this afternoon to arrange the first injection.
So the Rebif welcome pack is just as "chock-full-o-goodies" as the Copaxone backpack was. I received a large messenger style bag, a frezzer pack, a travel case for the freezer pack and syringes (enough for one week), a journal, a Rebiject (auto injector) in a fancy hard carrying case, a needle clipper, and a syringe disposal case for travel.
The needle clipper is the cats meow if you are someone who requires home injections!
Emily
And the Rebiject has rubber grips that the Autoject didn't!
As I rest tomorrow, we will be visited by the training nurse...and I will have my first Rebif injection. The time has finally arrived. I received my Serono "welcome pack" by courier on Tuesday, and the training nurse phoned this afternoon to arrange the first injection.
So the Rebif welcome pack is just as "chock-full-o-goodies" as the Copaxone backpack was. I received a large messenger style bag, a frezzer pack, a travel case for the freezer pack and syringes (enough for one week), a journal, a Rebiject (auto injector) in a fancy hard carrying case, a needle clipper, and a syringe disposal case for travel.
The needle clipper is the cats meow if you are someone who requires home injections!
Emily
And the Rebiject has rubber grips that the Autoject didn't!
Get with the program
Posted in on Tuesday, February 12, 2008 by Emms
*sigh*
Another trip to physio yesterday morning...another appointment where my chart was not available to review test results.
So the therapist decided that she would discuss strategies with me for what she derived from her testing...which is a left beating nystagmus. I listened for a bit, and took note of her suggestions. Then I asked if a left beating nystagmus would cause my "rocking sensations"..."Well, no, not really", was her response. She then got defensive, saying that the other tests should not diminish her findings.
So I dug deep into my "salesperson bag of tricks"...looked her in the eye, constructed a look of sympathy on my face..."Oh, of course not. I'm sure that you observed a left beating nystagmus back in March. However, that isn't why I was advised to come here. There is some concern that I could fall on my butt at any time...even though I don't feel that way."
"Oh...so Dr Garber sent you here to work on your balance! Let me get some tools..."
And that is how my exercise program was born!
As for her other strategies, I will try those too. In hindsight, they seem to make perfect sense...too simple, really. Essentially, vision and cognition will overpower sensation. In a moment of "wobbles"...STOP, THINK, and STARE. Stop what I'm doing, tell myself that things are stable, and focus on a stationary spot.
I am in charge.
Emily
Another trip to physio yesterday morning...another appointment where my chart was not available to review test results.
So the therapist decided that she would discuss strategies with me for what she derived from her testing...which is a left beating nystagmus. I listened for a bit, and took note of her suggestions. Then I asked if a left beating nystagmus would cause my "rocking sensations"..."Well, no, not really", was her response. She then got defensive, saying that the other tests should not diminish her findings.
So I dug deep into my "salesperson bag of tricks"...looked her in the eye, constructed a look of sympathy on my face..."Oh, of course not. I'm sure that you observed a left beating nystagmus back in March. However, that isn't why I was advised to come here. There is some concern that I could fall on my butt at any time...even though I don't feel that way."
"Oh...so Dr Garber sent you here to work on your balance! Let me get some tools..."
And that is how my exercise program was born!
As for her other strategies, I will try those too. In hindsight, they seem to make perfect sense...too simple, really. Essentially, vision and cognition will overpower sensation. In a moment of "wobbles"...STOP, THINK, and STARE. Stop what I'm doing, tell myself that things are stable, and focus on a stationary spot.
I am in charge.
Emily
schedule for the week
Posted in on Sunday, February 10, 2008 by Emms
Jason is on vacation this week! Oh what the week will bring...
Actually, we already know what the week will bring. Yesterday afternoon, we sat down and wrote a schedule for the next 9 days. The schedule has three purposes: to make Jason feel like he accomplished something on his vacation; to compel Jason to complete the mudding/sanding/painting of the new walls in the basement; and finally, to best optimize our time together by scheduling down time for me.
The first piece of advice that I received when I was diagnosed, was to never schedule back to back BIG days/events. While we have tried to adhere to this style of living (haha, like I have much of a life right now), we are truly taking it to heart this time. We will see if mandatory rest periods (not to mention simply having a schedule) influence my bad day to good day ratio.
One thing that we were not able to schedule for this week was my first injection. I called Elsie on Friday to let her know that I have my needles, but I don't have the parcel that I was supposed to get from her. So now it looks as if my first injection will be late this week or early the following week. I really would have loved to have Jason not under the burden of a 4 am get up for the beginning of this.
C'est la vie,
Emily
Actually, we already know what the week will bring. Yesterday afternoon, we sat down and wrote a schedule for the next 9 days. The schedule has three purposes: to make Jason feel like he accomplished something on his vacation; to compel Jason to complete the mudding/sanding/painting of the new walls in the basement; and finally, to best optimize our time together by scheduling down time for me.
The first piece of advice that I received when I was diagnosed, was to never schedule back to back BIG days/events. While we have tried to adhere to this style of living (haha, like I have much of a life right now), we are truly taking it to heart this time. We will see if mandatory rest periods (not to mention simply having a schedule) influence my bad day to good day ratio.
One thing that we were not able to schedule for this week was my first injection. I called Elsie on Friday to let her know that I have my needles, but I don't have the parcel that I was supposed to get from her. So now it looks as if my first injection will be late this week or early the following week. I really would have loved to have Jason not under the burden of a 4 am get up for the beginning of this.
C'est la vie,
Emily
moving along
Posted in on Thursday, February 07, 2008 by Emms
I dropped off my new prescription this morning. This means that I will likely start it late next week. I can't begin until I book an appoinment with a local nurse to come and discuss injection tricks of the trade.
Also, I thought that I would mention that I am being a good patient, and I have been doing my exercises.
1. tossing a tennis ball from hand to hand
2. sit ups
3. staring at a spot on the wall, and turning my head while leaving my eyes on the spot
4. standing with my legs crosssed, my arms crossed, and closing my eyes
Time to stare at the spot...
Emily
Also, I thought that I would mention that I am being a good patient, and I have been doing my exercises.
1. tossing a tennis ball from hand to hand
2. sit ups
3. staring at a spot on the wall, and turning my head while leaving my eyes on the spot
4. standing with my legs crosssed, my arms crossed, and closing my eyes
Time to stare at the spot...
Emily
this morning
Posted in on Monday, February 04, 2008 by Emms
I don't do mornings. Never have...and quite possibly never will. Well maybe I will do mornings once I don't feel the physical and mental need to get 9-12 hours of sleep every 24 hours.
Yesterday, Jason and I were discussing whether or not I should put myself on a schedule - alarm clock and all. The discussion was pretty brief: no alarm clocks for me right now.
Back to why I was up early this morning:
I had my first physio appointment today. Things may have been more productive if my chart, with all test results, had been delivered to the rehab department. Instead, it stayed at the MS Clinic. The therapist administered some tests of her own, and many of them I executed a result that falls within normal range. I also mentioned to her that today was a fairly good day, symptom wise. Eventually, after placing me in total darkness and shaking my head around like a magic eight ball in her hands...she cracked the mystery..."ah ha!"
Her conclusion is that all of my symptoms "make sense" and we can try to better manage the symptoms...but no promises. I don't get that impression that the rehabilitation will only be as good as the student...there will be other uncontrollable factors interfering with the results.
Marbles still rattlin'
EMilY
Yesterday, Jason and I were discussing whether or not I should put myself on a schedule - alarm clock and all. The discussion was pretty brief: no alarm clocks for me right now.
Back to why I was up early this morning:
I had my first physio appointment today. Things may have been more productive if my chart, with all test results, had been delivered to the rehab department. Instead, it stayed at the MS Clinic. The therapist administered some tests of her own, and many of them I executed a result that falls within normal range. I also mentioned to her that today was a fairly good day, symptom wise. Eventually, after placing me in total darkness and shaking my head around like a magic eight ball in her hands...she cracked the mystery..."ah ha!"
Her conclusion is that all of my symptoms "make sense" and we can try to better manage the symptoms...but no promises. I don't get that impression that the rehabilitation will only be as good as the student...there will be other uncontrollable factors interfering with the results.
Marbles still rattlin'
EMilY
drug update
Posted in on Sunday, February 03, 2008 by Emms
I am one step closer to starting my new drug therapy...Rebif. I received my prescription in the mail on Thursday, now I am awaiting my Exceptional Drug Status letter from the provincial government, so that I can get the take the prescription to the pharmacy to have it filled.
Safeway Pharmacy, where we take this prescription now offers 7 times the airmiles everyday, instead of 10 times on the first Tueday of the month. humph.
On Friday, I connected with Elsie, my new drug therapy nurse, courtesy of the drug company. Elsie is located somewhere in the 905 area code...which means I don't get to speak with her in person. My previous nurse, Rosie, has apparantly set the bar quite high. Not only was Rosie wonderful, but it looks like Teva Neuro as a company will have outplayed Serono in my world.
I am anxious to get going on this new drug. I will be injecting 3 times a week, versus every day. I suppose that is a bonus right there (and Rebif also claims to have the thinnest gauge needle in their field). However, I'm a bit nervous about the possible side effects...site reactions and flu-like symptoms (chills, achey, nausea). I asked Elsie how long the side effects are generally an issue for patients, and she said that she was unable to answer that. She said that I could experience the discomfort with each injection anywhere from a couple of days, to many months. Rosie would have given me an answer...and solutions! I guess that is why Rosie worked for Shared Solutions.
And...Rebif is going to cost us more out of pocket (compared to Copaxone) as we pay down our deductible starting in April.
I'm off to bed early tonight. I have a vestibular physio appointment tomorrow morning at 8:15! Yes, they really do have a short notice cancellation list! Obviously, no one took into account that I don't begin to roll out of bed until 9:30!
Emily
Safeway Pharmacy, where we take this prescription now offers 7 times the airmiles everyday, instead of 10 times on the first Tueday of the month. humph.
On Friday, I connected with Elsie, my new drug therapy nurse, courtesy of the drug company. Elsie is located somewhere in the 905 area code...which means I don't get to speak with her in person. My previous nurse, Rosie, has apparantly set the bar quite high. Not only was Rosie wonderful, but it looks like Teva Neuro as a company will have outplayed Serono in my world.
I am anxious to get going on this new drug. I will be injecting 3 times a week, versus every day. I suppose that is a bonus right there (and Rebif also claims to have the thinnest gauge needle in their field). However, I'm a bit nervous about the possible side effects...site reactions and flu-like symptoms (chills, achey, nausea). I asked Elsie how long the side effects are generally an issue for patients, and she said that she was unable to answer that. She said that I could experience the discomfort with each injection anywhere from a couple of days, to many months. Rosie would have given me an answer...and solutions! I guess that is why Rosie worked for Shared Solutions.
And...Rebif is going to cost us more out of pocket (compared to Copaxone) as we pay down our deductible starting in April.
I'm off to bed early tonight. I have a vestibular physio appointment tomorrow morning at 8:15! Yes, they really do have a short notice cancellation list! Obviously, no one took into account that I don't begin to roll out of bed until 9:30!
Emily
just my opinion
Posted in on Saturday, February 02, 2008 by Emms
"Here to call the battle of Alberta, Bob and Garry."
Tonight, those were the words of Hockey Night in Canada rink side reporter, Cassie Campbell. There is absolutely nothing wrong with the statement, except that she said it before the Toronto - Ottawa game! Calgary and Edmonton didn't play each other tonight...Edmonton don't play tonight at all!
The blunder in the statement is embarrasing, hockey fan or not. She is a Canadian Women's Hockey Icon! She is Canadian! She has 21 medals, 17 of them are gold! She is a former captain of the Canadian Womens Hockey team!
On Oct 14 2006, she became the first female Hockey Night in Canada colour commentator when Bob Cole was snowed in down the highway in Buffalo. Previous to that one appearance, and ever since, her role on HNIC has been that of a rink side reporter. I didn't hear Cassie on that game, but I have seen her work since then. With more that one year on the job, I fail to see what she brings to the broadcast: she is quiet and emotionless. She is about as captivating as watching the zamboni.
May she do better as Scotiabank's special advisor on hockey related initiatives (as announced on January 18).
Emily
Tonight, those were the words of Hockey Night in Canada rink side reporter, Cassie Campbell. There is absolutely nothing wrong with the statement, except that she said it before the Toronto - Ottawa game! Calgary and Edmonton didn't play each other tonight...Edmonton don't play tonight at all!
The blunder in the statement is embarrasing, hockey fan or not. She is a Canadian Women's Hockey Icon! She is Canadian! She has 21 medals, 17 of them are gold! She is a former captain of the Canadian Womens Hockey team!
On Oct 14 2006, she became the first female Hockey Night in Canada colour commentator when Bob Cole was snowed in down the highway in Buffalo. Previous to that one appearance, and ever since, her role on HNIC has been that of a rink side reporter. I didn't hear Cassie on that game, but I have seen her work since then. With more that one year on the job, I fail to see what she brings to the broadcast: she is quiet and emotionless. She is about as captivating as watching the zamboni.
May she do better as Scotiabank's special advisor on hockey related initiatives (as announced on January 18).
Emily
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Little bits about my life with MS
