Rebif Woes

Last night, I skipped my Rebif injection. I didn't forget about it, and I wasn't intentionally giving my skin a break (although it is a benefit of skipping, and probably needed). No, I am protecting my liver. sigh.

The doctor has yet to review my most recent blood work, but the MS Clinic nurse was compelled to phone me and ask a few questions about my lifestyle when she discovered that my AST (one of the two measured liver enzymes) is the highest it has ever been. The troubling part for me is that it is the highest, despite me weighing more than ten pounds less than I did at my previous high. Outside forces that could change the enzymes are alcohol consumption and increased acetaminophen intake - neither of which apply to me. I tried to blame the increase on my less-than-stellar eating habits.

*the other measured liver enzyme is the ALT, which if I remember correctly, was actually the higher (and disconcerting) of the two numbers

So Dr. E. will review my blood work today: the options, as discussed by myself and the nurse, are to either terminate the Rebif therapy or cut back to 22mcg (which I can't do without a new prescription). I'm pretty sure that following my latst MRI, I expressed here in my blog that I feel the Rebif is working for me - terminating the therapy is the last thing that I want to do.

Emily

Another Swallowing Study

Once again, I don't have much time to prepare for an upcoming appointment. Thanks to a canceled appointment, I have a swallowing study with the speech-communication disorder clinic, on Monday. Instead of once again telling Dr E. that I have had the specialists evaluate me already, I accepted the referral (this will be by third visit with a speech therapist). I receive annual "check-in" surveys from the therapist, but when this past one came around, I didn't have the problem that I have now.

I gag when I brush my teeth.

If you have followed my blog from it's beginning, you would know that I take great care of teeth. And if you have ever been with me at bedtime, you would know that I take special care when brushing me teeth: no corner, surface, or cranny is missed.

But for the past month (or more) brushing my teeth has been an uncomfortable routine. I don't expect anyone to be able to help me with this situation, but I do want to know if it's related to my MS.

Emily

Annual Check-up

Life goes on. Things get better.

Earlier this week, I had my annual MS check-up with my neuro. I knew that the date was approaching, but I hadn't cemented it in my head, as I had in the past. I didn't spend a week worrying about what to say, how to explain my concerns, or what silly things the nurse might say to me to make me feel crazy. I left feeling good about things.

Well, as good as can be. I have another MRI coming up in February: it's nice to see that my neuro is showing an interest in my brain. I also got a prescription to help me with my bouncing legs at night. That's it for another year.

Life goes on. Things get better.

Emily

Learn. Evolve. Grow.

Wow. I went a whole month without a post. I'm sorry.

I guess that I am settling in to my new reality. I could complain about the same old things: red marks, never receiving more than one month of Rebif at a time, brain fog, hating this disease...but I'm used to it all now.

So what do am I doing with myself?

It seems it wasn't that long ago that I was questioning my purpose. My life plan had changed.

Drastically.

In more ways than one.

So I re-focused my interests: I feed and grow new things in my life, nurturing what I can do. (while trying not to focus on what I can't do).

Learn. Evolve. Grow.

Emily

Results, Prompting Questions

I'm sorry to have kept you in suspense for so long! I just realized that I haven't shared my MRI results with you. I have been celebrating since Monday afternoon...all by myself!

Let's skip the small talk and get down to business...

First of all, the Winnipeg Regional Health Authority has streamlined patient records. This means that when I have a procedure at a different hospital than normal, the new hospital can access the old records. This means two things to me: I can't get a new diagnosis very easily; and it is helpful to see if things have changed on my MRI's. I guess I will go with this being a positive development.

So...I still have MS...I didn't receive a "this isn't MS" report from the radiologist. Rather I received a "everything in my brain is just as it was 3 years ago, except that the lesion in my frontal lobe is smaller, and there is a new lesion in the pons", report.

That's okay. And if I understood this disease, or had a neuro that I could speak with, I'm sure that I would say it's great. In the moment of hearing the report, Jason and I were happy. My doctor is happy.

But I'm still worried. This means that the lesion assault on my brain is still there. Oodles of white marks, visible in a black and white photo of my brain. What are "they" doing? What have "they" been doing for the past 4 years? Are they just floating...waiting to all pounce and be reflected in my outward self all at the same time? Slowly nibbling away my myelin?

Well...it will be what it will be...right? The course can't be altered.

But I do think that I will stay on a DMD. I'm going to convince myself that it has been the Copaxone and the Rebif that have kept more of the fuzzy white spots away.

Emily

P.S. Jason, upon review of this post, has the answer to what the "white spots" have been doing... "They're pissing you off".

11:30 p.m. Musing Number 2

A conversation between Jason and I...last night...library books closed, table lamps recently switched off.

Me: Are you awake?

Jason: Yeah.

Me: What did you say Pi is?
~in reference to a conversation we had earlier in the day

Jason: 3.142857

Me: Well then how many centimeters are in an inch?

Jason: 2.54

Me: Right. Got it.

Ch-ch-ch-changes

I have spent the past four years trying to figure out how to live with my MS. I have noticed that everyday, I'm aware of it's presence. I can't go a day without experiencing something connected to the disease: an injection, a twitchy leg, a crushing headache, a stumble, cog fog...

I have limits. I must be prepared for the unexpected.

BUT I CAN'T TAKE IT ANYMORE!

whew.

I feel stagnant.

So I'm challenging myself. Although I often feel that it's a challenge just to eat, I'm hoping that by challenging and changing other aspects of my life, the daily grind will get easier.

My first challenge is to get out of the house two days a week, and spend some time at a new, local crafty hangout. I have opted for two days that are NOT P.I.D days - and a time of day that is usually good for me...3 p.m.

I got a taste of a weekly challenge with aqua-fit, and now that aqua-fit is over until October, I need something else. This new challenge is both physical and mental...and hopefully fun!

Emily

MRI

Well that was fast. I haven't even had an opportunity to tell you about my MRI last week, and I'm already booked to get my results next week (Monday, to be exact).

In a nutshell - the scan went well. I had the luxury of being scheduled in the BIG machine - 12 cm larger than the "other" two machines available. Everything ran on time, and I'm sure that I kept it that way, as I didn't thrash my legs, or need to be pulled out of the machine, before getting in all of the way.

I'm still nervous. The scan is over, the report has been written...

I'm pretty sure that I have MS...as my doctor isn't rushing me in to tell that I don't have MS.

Emily

preparing for my MRI

I have begun some deep breathing exercises, anticipating Tuesday evening's scheduled MRI. I have enough of a sedative on my person right now to knock out two grown men: my doctor couldn't believe the dosage that I requested from her.

My last brain MRI was April, 2007. I am so curious about what things look like in my noggin!

This scan is being done at a different hospital than all of my previous scans. What if the radiologist reports something different from MS? What if the "photo" is still covered in white blotches, but they are not representative of MS lesions? What if my brain looks the same as it did in 2007, and the hospital wants to see me?

What if my doctor (my GP, the referring doctor) gets a report back, specifying MS, but indicating (very) active disease, and she wants to try a course of prednisone?

Oh dear, my brain is overdrive.

Emily

A Few Items For MS

In this great Etsy shop, there are currently three items for sale with profit to MS - directly to my MS Walk Team - Em's Slackers. There are other items in the shop as well, in which the proceeds go to a different charity.

The Scribble Shop Em's Slackers MS Section

I created and donated the brass necklace.

rotten - medium - fantastic

On a scale of Rotten to Fantastic...

I would be happy with more "medium" days.

Thank you.

Emily

11:30 p.m. Musing

"Life takes a lot of twists and turns. The best compass to follow is your gut". Emily

Another Leg Injection

Ha Ha Rebif! I fooled you...or I'm getting used to you in the leg.

I decided to not completely "drop" my thigh from injection rotation. Instead, I applied a topical freezing (xylocaine)to the area (3" x 3"), twenty minutes before the "event". I have had this tube of ointment since my "Copaxone Injection Days"...it didn't work for the Copaxone, so I didn't expect it to make a difference with the Rebif.

Anyhoo - it went okay. The experience was considerably better than any other leg injection I have done...not as good as my arm...but bearable.

In other news - today was the last day off MS Aquafit until October. The aquafit itself was uneventful - BUT - I did have a moment in the pool where I felt FOG FREE. My brain felt clear...unfuzzy...I haven't felt like that in weeks, possibly even months.

What a good day.

Emily

Side Effect, Darn It

I may have jumped the gun when I said that everything was okay regarding the Rebif 44 dosage, and any side effects. Not that things aren't "okay", I'm just a bit more uncomfortable on P.I.D. days. It took all of last week's injections, and a jump out of the state of denial* I was in to discover the new side effect.

*denial being that there had been no change when doubling the dosage.

On Monday's, Wednesday's and Friday's (P.I.D. days) I feel like I'm going to throw up AND I have a crushing headache.

I have already been dealing with nausea, but now my body is experiencing the physiological symptoms of vomiting: my saliva gets hot, my cheeks tingle, my stomach churns, and I start a trek to the toilet. For nothing.

Emily

Regarding injecting my thigh - I was surprised to learn of the "inject where the seam of your pants would lie". And - if you have "saddle bags", all the better! Alas, this isn't working for me. But last night was an arm - and it was GREAT! Quick, painless...

My latest thoughts on CCSVI

There is so much going on in the world of CCSVI. And I haven't been able to keep on top of it. Concentration is one of the first things to diminish with my fatigue, and without it, I don't read much of what I see on the computer.

Everyday, my Facebook news feed is filled with videos of people who have been "Liberated" or are going to be "Liberated" - from all over the world. Every once in awhile something sticks in my brain, as I scroll though the "news" - including two Canadians (one person from each coast) who are considering filing human rights complaints over the lack of "Liberation" in Canada.

So what has me thinking of CCSVI...

Can you imagine having Primary Progressive Multiple Sclerosis, the type of MS without relapses or remissions. It runs a course that can not be altered or slowed by any medication. The annual trip to the MS Clinic only brings about negativity and disappointment: the doctor wants you to know that there is nothing he can do for you...

And as for CCSVI - it isn't scientifically proven.

Emily

negatives

Hot hot hot. It's 15 degrees (and overcast) today, and I am HOT. My internal thermostat is whacked. Broken. Misfiring. Screwing with my happiness and comfort.

My face is covered in beads of perspiration. I radiate heat.

And to top it off, I think that the 44mcg of Rebif is creating more/greater nausea on my P.I.D days. And more headaches.

And my left leg is uncomfortable: it feels like a stretched elastic - and every once in awhile (okay, every five minutes) it releases, somewhere in my leg.

Did I mention that I'm still dealing with a rough run of fatigue?

These are tough times.

Last week, and I think even for a couple of days the week before, I napped every day. But I still pushed through - trying to be "productive" everyday. So far, since Sunday, I have done pretty much NOTHING. I don't even have the desire to be "productive".

For a change, I'm not fighting with myself to "do" something.

Emily

Oh yes, and here is a Rebismart update. I can no longer handle the pain associated with injecting the Rebif in my thigh. I've tried an icepack prior to the injection, and maybe in a couple of weeks I'll try heat. But for now, I have dropped my thighs. I'm in no frame of mind or physical space to put myself through any more pain than necessary.

STOP.

Word in the house, is that I am NOT the little pink bunny who never quits...sometimes, I need to recharge - whether I like it or not.

I need to respect my limits - when I'm tired, or feel like I should stop what I'm doing and lay down - I need to do it...don't push it...no more "just one more minute".

But it's so frustrating!

Everyday this happens: I hit a point in my day, no matter what I am doing, that I need to stop and recharge.

This past winter, I learned the importance of scheduling my week...day by day...hour to hour. This includes scheduling rest.

I have to get back in to the routine of doing this...I am exhausted...I need to make changes. Help myself.

Emily

22 to 44

The switch from 22 micrograms of Rebif to 44 micrograms of Rebif was...uneventful. woohoo! If anything, the burning sensation during the injection has continued to improve/lessen. And, my P.I.D. experience was in the normal to average range!

Nothing new to report or experience on the injection front!

Injection number 2 at 44 coming up tomorrow!

Emily

Happy Song

A toe-tapper...a groove maker...starting my day!

Uh Oh, I'm Complaining

Today is a traditional P.I.D. day for me...possibly accelerated by being over-fatigued. I don't know if over-fatigued is an actual condition, but this now how I will, from here on in, refer to day's like today. I haven't been able to control my "I have to be doing something to be valuable" tendencies, and now I'm paying for it. I'm cranky, achy, angry, sad, frustrated...

Determination, a stubborn personality, adrenalin, and stupidity have gotten me this far...and have now sucker punched me.

I'm angry with myself, I'm angry with my situation.

I'm achy...because it's a P.I.D. day (for tomorrow's injection, I get my first 44mcg dose).

I'm sad because I don't have the physical or mental energy to do things...and I'm sad because I can't believe that my life is like this.

I have all but given up on house cleaning. I seem to be able to spend my time on one thing...my bead hobby - and nothing else. If I was cleaning the house, I wouldn't have enough energy for my hobby...I don't imagine that would make me feel any different than I do now. Today, and for the past few days, I'm not even spending time with my beads. I did go to aquafit yesterday, and I will admit that I had to push myself to go.

And don't get me started on eating and exercise! I have less than three months to "fix" my triglycerides...I'm not off to a good start. I don't have the energy to 1) assemble a meal 2) do a thorough and healthy grocery shop 3) make a meal plan 4) eat much more than ice cream or cereal...soft and easy foods for me.

And where is Jason in all of this? Apparently, I'm not supposed to rely on him for healthy eating. So he is in the driver's seat of the car...taking us to the restaurant. He has had his own troubles for the past while...

But I broke it to him the other day...and reiterated it today...I need to be carried. I feel as if I have been carrying us for some time...and I'm tired.

Emily

Oh the Twitching!

Oh, my legs. My flippy, floppy, twitchy legs. And now that the weather is changing, and the sun is hotter, my trusty heating pad is no longer going to be a wanted partner in my bed!

For months, I have slept with a heating pad under my calves. I find that without the heat, my twitches are worse. When the twitching is real bad, I lay on my side, and wrap the heating pad between and around my calves, twisting around so that is is tight on my legs: the combination of heat and binding helps to control things.

But now...dear legs...your season of twitches must come to an end....please.

Emily

The Liberation Procedure

I try not to allow these "Bits" to be overly controversial. I want to be informative, helpful, inspiring, and a "bit" funny.

But as I sit here, reading how the radiologist who performed the "liberation" procedure in a Vancouver hospital is now in hot water, I can't help but think...

Professionals who perform the Liberation procedure are "Assisting Living"... not "Assisting Suicide".

So why is the Liberation Procedure illegal in Canada?

"Liberation" is sought because it increases the quality of life of a person living with MS.

Temporary or permanent, we do not know, but to be able to live outside of the "fog", outside of the "fatigue", to feel your limbs, or potentially walk unassisted for even a short amount of time is within our reach...and would be a dream come true.


Emily

*20 of the 93 "suicides" engineered by Dr. Kevorkian were people living with Multiple Sclerosis

CCSVI Rally

Today has been a down day. Lots of time spent in my bed, in my most relaxed and least energy consuming position. What is such a position...and I'm not alone in recognizing this, as I have recently discovered...no clothes, on my stomach, arms spread wide. Wearing clothes uses energy. And lately, I have spent my energy on other things, rendering clothing optional.

Yesterday afternoon, I attended a CCSVI rally at the Manitoba Legislative building. Accompanied by Jason, C-Dazzle, and Jay, I stood in front of the grand building, with more than 100 other Manitobans. CCSVI Manitoba is one of many grass roots organizations sprouting up in Canada, working for the common goal of making Chronic Cerebral Spinal Venous Insufficiency testing and Liberation available (legally) in Canada. Instead of being treated here, Canadians are traveling to India, Poland, Kuwait, and Egypt for the procedure.

Manitoba wasn't the only province or city holding a rally yesterday. And MS sufferers weren't the only ones acting on behalf of CCSVI: The MS Society of Canada took action yesterday as well, announcing that they will be asking the federal government to earmark $10 million for CCSVI research.

At the rally, we raised signs (when not warming our hands in our jackets!) and listened to a handful of speakers including: Duncan, who was "Liberated" in Poland; Jennifer, who's husband is quickly deteriorating from MS, and has had a positive MRV (strictured and collapsed jugular veins); and Manitoba's Health Minister. The common message, directed to doctors, politicians, and those with the power is this:

Remove MS from the equation, and treat people for CCSVI.

Rebismart Update

I'm still tinkering with the settings on my Rebismart. I'm trying to make it a bit more comfortable: I flinch when the needle pierces my skin and the medication burns.

The first change that I have made is to adjust the needle speed (the speed which the needle moves) to FAST, an increase from MEDIUM...this seems to offer me less time to flinch. And yesterday, following yet another "I just want to rip this damn thing off my leg because it hurts so bad" injection in my thigh, we have changed the injection speed (the flow of the Rebif) to SLOW, a decrease from MEDIUM.

Hopefully this new mix of slow and fast will ease the discomfort.

Despite the discomfort, I'm still happy to be using the Rebismart injection device. I'm not considering switching back to the manual injection...and I'm definitely not interested in using the Rebiject (spring loaded injection device). If I remember correctly, the burning sensation of the Rebif will get better over time. And, I still have a few more settings that I can adjust.

On another note...

Did you notice in the Walk photos, that I was streaking?

Streaking to support MS!

Emily

MS Walk

Another MS Walk is in the books. Number 4 for my team, Em's Slackers.

I'm exhausted today. Yesterday was such a great day, I may have pushed myself a bit too hard...but it was fun while it lasted.


Huge and heartfelt thanks to the Slacker's , the wanna-be Slacker's, the donators, and the helpers.

And thank you to the Walk organizers for bringing back a shortened route this year! In the weeks preceding the big day, I was worried about my energy level (forgetting all about the power of adrenaline). I didn't feel that 7 kms of pavement pounding was in me. So when they announced a 3 km trail, I was thrilled!

If I had walked the 7 km route, I may not have been able to bump and volley around a ball in the backyard. And if I hadn't done that, I wouldn't have fallen down on all fours...four times! I assumed that since I wasn't feeling wobbly, I could run around the yard, with my arms extended in front of me, face directed at the sky, chasing a volley ball. I was wrong.

But the urge to feel the soft leather of a volley ball on my fingertips was too much. That urge over powered the importance for me, to watch straight ahead while moving. The eye-motion relationship is something I struggle with (and protect) daily. It's why I can't browse a store. I knew better... in hindsight.

And today, I rest.

Emily

Courage

When I was diagnosed with MS, Jason and I had one visit with the social worker associated with the MS Clinic. You may have heard me say this before, but if you haven't, you may want to sit down.

Jason and I were advised by the young woman, to be cautious when spending time with other people, living with MS. Her reasoning was that we were doing well, and some people have a habit of bringing others down with their doom and gloom attitudes.

Her advice didn't sit well with us, yet it has remained in my mind.

I have now realized that she should have given us the opposite advice: spend some time with others, and you will find courage and inspiration.

A new woman has joined our aquafit class, and her participation made me realize that all of the people I spend Tuesday mornings with are inspirational. Scooters, canes, and walkers line the side of the pool, while the people in the pool power through the chest high water, struggling to stay upright.

The new "pool shark" clings to the side ledge of the pool, never making it halfway across, while the rest of us turn back after completing one width. Her arms shake, despite being more comfortable than the previous week.

It would be so easy for her to NOT get in the water. As I say that, I realize that it is challenging just to get IN the water, and not because it's cold! If you can't walk without assistance when you are on land, what possesses you to go in water?

Courage.

And I hope, that if the course of my MS finds me with a cane, a walker, or a scooter...I will remember how I feel today...inspired.

Emily

The Red Blotch

This photo is a follow-up to the injection on Sunday April 11. I video taped that injection, and you can see it in a previous post. Now I'm sharing with you, the yucky "red spot" that comes up a couple days to a week after an injection. This spot will last for about a week.

The spot feels like my skin: there isn't a temperature difference between the red and the natural skin tone. It isn't swollen, and it doesn't hurt. It's just ugly.

Is it time for an increase?

Dr. E (my MS neuro) is wondering if I want to increase my Rebif dosage to 44 micrograms. According to the nurse, Dr E. says that "theoretically, 44 is more beneficial".

Hmmm.

I have nothing to lose, and I have to assume that I can always go back to 22.

Have you switched from 22 to 44?

Emily

After Aquafit

Aquafit tomorrow!

Last week, following the pool, I went to Tim Horton's with a couple of the other "pool sharks". A large part of me, just wanted to get home and crawl into bed. Aquafit (and peeling off a wet bathing suit) makes me crave my bed: it's a tiring event.

But I discovered that because the Tim Horton's is close to the pool (not to mention on the route home), stopping to re-group is a good idea. I can have a treat...I can rest up for the drive home...and I can spend some time with "people". I don't spend much time with "in-person-people" these days.

And as one of the "sharks" said...it's good to spend time with people who "get what you are talking about".

Emily

Another Video

I made a video of last night's injection with the Rebismart. The audio and video aren't perfectly in sync with one another, but it will do. Also, I show how I inject into my arm.




Emily

Independent Injector

I am an independent injector! On Thursday night, I injected my right bum cheek - all by myself. I was so alone - Jason wasn't even home. The cats were sleeping. The people in the television were ignoring me.

I did have to psych myself up. I straddled a chair, and made sure that I could reach the spot - I made sure that Rebi would beep, which she does to tell me that she is ready to go. I also had to make sure that I could hold Rebi steady for the entire time (11 seconds post injection, while the needle is still in my skin, plus the time the evil solution comes down the needle...maybe 5 seconds).

This means that I am able to do all of my injections, comfortably, by myself. Arms, thighs, bum and stomach. I don't need to have "Otto" and "Manuel" on my staff anymore.

*Otto and Manuel are Jason's inner injection-personalities, designed to make injecting easier for both him and I. Otto uses the auoto-injector and Manuel uses the needle manually.

Now all I need is the larger purse that I desire, so that I can carry Rebi anywhere.

Emily

Back to the pool

I have signed up for another 10 weeks of aquafit!

First class....tomorrow!

CCSVI and Me

I seem to have made up my mind for now, regarding CCSVI and me.

While I strive to understand my body...have my finger on my pulse, so to speak...and I like to learn about my disease...I don't have the resources to apply for CCSVI testing.

However, I continue to be interested in CCSVI developments, and patient stories.

One story, that I watched on You Tube, really hit home for me. When I question the accuracy of my diagnosis, I come across a person with the same challenges that I have...and she has MS.

She prepared a video, for her 20 day check-in following the Liberation Procedure. She had a list of "things that I can now do and couldn't do before I was Liberated" and it sounded so much like my life!

She is now able to do FULL grocery shops on her own, and not just pick up the necessities. And after shopping, she can dance around her house! She has had a coherent conversation with her husband, and actively participated in a local trivia challenge (something she has had trouble with because of "recall" problems). And, her heat tolerance is decent...and numbness and tingling has lessened.

That sounds like me!

But what if I were to borrow the money needed for the testing...

No where in Canada can I get the Liberation Procedure.

What if once the procedure is available in Canada, more (or different) testing is required?
*maybe veinography is best, but not offered right now

What if I don't have narrowed veins?

What if I do have narrowed veins?

So for now, I will live through people who "sound like me"...and listen to them enjoy a rejuvenation and a liberation...

Hmmm...that doesn't sounds fair...

Emily

Summing Up Rebi

Rebismart is good.

We tinkered with the comfort settings before the injection last night, and it was grrrr-eat!

And for the first time, I injected myself in my arm. The Rebi makes it easier to reach all of the suggested injection areas: it's easy to hold because of it's size (and weight) and it doesn't take effort to hit the button.

It's good.

Tomorrow night, it's the back hip...and Jason's first go at it.

Emily

What Was With That Injection?

I'll have to talk more about my smart injections next week. Why? Because I need at least one more under my belt to remember what it was like.

I don't think that the process was quiet, and that may be what threw me off the most with the first one. The association between the discomfort (a strange kind of pain) in the injection area, that is obviously related to the mechanical noise being held in my hand, resting against my thigh.

And, I hit a vascular area.

Does that sound complicated?

That's how I feel.

With the Rebismart, you can adjust the speed in which the needle pierces your skin, the depth in which it sits in your tissue, the speed of the medication coming down the needle, and how long the needle sits in your tissue after the medication has drained. There is a lot to customize.

On a different note...

I had my first appointment with my new GP doctor this week...and I like her. She has ordered an MRI of my brain! She couldn't believe that I haven't had one since April 2007. She orders her patients, who live with MS, one MRI per year. She believes that it is important to know what is going on, what's coming.

Have I found a partner in looking after my health?

Emily

I Did It!

I have something to share with you!



This is take number five...next time, I'll work on the lighting, and maybe have a better idea of what I want to say.

Why a video post?

I wanted to try the Rebismart device because I need to "spice up" injection days. Everything is going great with the injections, but I still wanted to take advantage of this exciting, electronic opportunity.

So in the spirit of "spicing things up"... I though that I would try a video.

Please tell me what you think,

Emily

Rebi is Collecting Dust

I would love to be able to share my first Rebismart experience with you...right now.

But I can't, because I haven't had it yet.

There is only one nurse in this province who is trained with the Rebismart device, and she happens to be the nurse that I requested NOT to come and train me. I don't have a problem with her as a person, my problem is with her past "training" in which she read from the book, and I knew more than her.

*apparently, there is a home injection nurse shortage in this province

My phone nurse has not given in to my pleas to let me handle my first injection by myself. She is not susceptible to my charm and positivity. Today, I stressed that I am smart, and not afraid of Rebi...I have already set the comfort settings. But I don't have a choice.

I'm left waiting for the nurse...again.

Emily

More CCSVI and My Cart

So further to my apple cart...

It has taken me some time to accept this current "cart". I have finally stopped looking back at what I did have, did do, and did plan. Don't get me wrong, I still have days where life stinks, but when all is said and done, my sub-conscious has done a lot of work to get me here. Lemons and lemonade.

I am comfortable with my life right now. I still see dangling carrots (I hang them myself!), but they aren't unobtainable: they are just enough to keep me going. I feel secure, despite having an unpredictable disease. For the most part, I don't fear the repo-man, taking away my insurance (although, after speaking to someone who has been on insurance for 10 years, it is normal to ALWAYS have that fear).

So now, I have to consider that the CCSVI investigations in Vancouver are limited to scans only - no "Liberation". Is this something that I am interested in having done?

Would finding out that I don't have stenosis upset my apple cart?

Would finding out that I do have stenosis upset my apple cart?

What would I do with the information? Is it worth spending the money ($2350 plus airfare, hotel, and food)? Is it worth someone having to come with me?

What if I told you that the waiting list is LESS than four months? And, obviously, is less than $10 000.

What if I have the scans done, as per the current official protocol (as set out by Dr Zamboni and others), only to find out in three years*, when I go for Liberation, that I have to have it all re-done?

*this is a fictional three years

I have never planned to visit Vancouver, or at least not before I visit Newfoundland.

Decisions, decisions.

Emily

Rebi, CCSVI and My Cart

So much on my mind these days!

First of all, I didn't use Rebi last night. I'm taking my moms advice, and waiting for the nurse to come and instruct me. I sure hope that she calls us soon!

Oh yes, and did I mention that the four cartridges of Rebif (12 doses) cost less than 12 pre-filled syringes? Jason and I thought for sure that it would cost more - being *NEW*.

I didn't really have time to enjoy Rebi last night anyway. I have had "CCSVI" (Chronic Cerebral Spinal Venus Insufficiency) on the brain: in particular, doppler and MRV (like an MRI but of the veins) testing. There is a surgery/medical clinic in Vancouver, that is offering MS patients the recommended protocol for diagnosing CCSVI. I shouldn't say "offering" as you do have to pay for the tests. And if you do have narrowing of the veins, the clinic does not offer the "Liberation" treatment (opening the veins through angioplasty or stents). The "Liberation" treatment is not available in Canada.

*can you see me rolling my eyes?*

But should I have the tests, and discover stenosis...I could go to New York, or Poland...or even India to have my veins opened up!

*insert false excitement here*

Had I written this blog yesterday, I would have told you how the idea of the Liberation treatment scares me. At the time, I was under the impression that the clinic in Vancouver offered a complete package: testing and repair if necessary. I knew nothing of cost or time-line, but I was mulling over the idea of adding my name to the appointment list. I envisioned a waiting list of over a year, and a cost upwards of $10 000.

I also envisioned myself with narrowed veins. From there, I had the "Liberation" surgery... I felt...well, liberated...a changed person...free of the bricks weighing down my limbs...out of the fog that smothers my brain...energized. And so I envisioned myself returning to work...doing everything that I miss, and filling in the missing pieces of my current life.

And then...seven months later...crashing. Falling back on to the couch...the fog rolls in, the bricks encase my legs...and I no longer have disability insurance. It's a nightmare.

My current apple cart - no matter how good the wheels, at least rolls along. A bit wonky, but it works. Why would I want to upset it?

Emily

check!

I finally have all of my Rebismart pieces. The drug itself was the last piece - oh, except for the nurse who has to come and "teach" Jason and I how to use it.

I tried to convince the phone nurse that I don't need someone to show me how to use this new device - I have hit all of the buttons, and read the 3 booklets that came with it. But, I didn't win the argument. I am supposed to wait for the nurse to call and arrange a time for my first "Smart" injection.

I am thinking otherwise...and so is Jason. We'll see what happens ;)

I'm a rebel.

Emily

It's Fundraising Time!

Em's Slackers Fundraising Brochure

I'm Going to Need a Bigger Purse

Rebi arrived today. She's bigger and heavier than I anticipated!

First, there is her holding case - a curved, hard, rubber coated box. The device is nestled inside, along with room for four needles. The needles are packed individually in little creamer container disguises.

Rebi is comfortable to hold...big, but comfy. She's a rectangle with rounded edges...5" x 2 1/2" x 1 1/2"...much larger than her 4 AAA batteries! She weighs about as much as a large soup can!

As I was examining her, setting her date and time, I realized that she doesn't have the same casualness as a plain old syringe. Packing her in my bag for a night on the town is not going to be the same. She is neither light enough, nor slim enough to attach to my belt. Shoot-and-go's in the ladies washroom are a thing of the past!

I need a bigger purse!

Emily

Rebismart Piece 1

I received the first of three pieces for my Rebismart device today. Politics, egos, and first time confusions have all been dealt with.

The first piece is a pack of batteries, a box of needles, and a carrying bag (containing two freezer packs).

Tomorrow, the device arrives, and then on Monday, I pick up the cartridges containing the drug.

We're getting closer to the official launch!

***I have one more week of winter aquafit, so it's time to sign up for the spring session***

Emily

A Story

Yesterday morning, I "snoozed" once past my alarm, which I had set in order to get to Aquafit for 10am (I need to leave my driveway at 9:30). Being a PID day, I wasn't feeling the greatest. I neglected to take pain medication at 4 am, because...well, because I didn't think it was that bad at that hour. And I was too lazy to roll over, grab the bottle, sit up, and sip the water I keep with me on Monday, Wednesday, and Friday nights.

I enjoyed my morning bowl of Mini Wheats cereal, along with a wake-up glass of orange juice, and some anti-inflammatory pills. The sun was shining through our big front windows, and just a little lay down may be all that I needed to get moving past the kitchen table...

I laid down on my bed, having opened the curtains and blinds so that I could enjoy a direct sunbeam. Ten minutes, fifteen tops, and then I would get up and head out to aquafit. It was 9 o'clock, leaving me plenty of time to pack my bottle of water, some cookies, and find my car keys.

The sun was hot. The cats were purring: I had opened the blinds, of course! I was comfy on top of the covers, one cat to my left, and one to my right.

And then it was 11:15.

I slept through aquafit.

Emily

It's Wednesday

Since I'm sitting in front of my computer, I'm going to share my immediate post-injection thought with you...

***see me cringe***

***see me shudder***

That took a lot...to leave the needle in...to keep pressing on the plunger...it hurt! Did I hit a vein? It's hard to find a spot on my thigh that doesn't have a vein peeking through. How much is it going to bleed? Ouch. Damn.

Don't pull it out...keep pushing...push faster just to get it over with...

Done.

Ouch.

Maybe I should go back to icing the spot prior to the injection.

Icing...I have a can of icing in the fridge...that's what I need right now.

Emily

Are You Using Rebismart?

Well I'm glad that I cleared it up - even if using the Rebismart injection device, I can collect Air Miles!

I was worried that I was going to be forced to decide between rewards and injection comfort!

I don't have my Rebismart yet, but it's on the way. This device will hold a weeks worth (3) of syringes. The needle remains hidden (not that I'm scared of needles) throughout the injection process. The Rebismart is battery powered, and injects quietly, as opposed to a spring loaded injector, like the Rebiject, shown here:



According to the representative at the Multiple Support Program (the telephone nursing company used by EMD Serono to assist Rebif users), I am the first patient in Manitoba to be using the device.

Are you using Rebismart? Let me know!

Emily

update

I have completed two weeks of Rebif, and there is something that I need to work on: don't tense up just before the needle breaks through my skin.

The injections themselves sting, but I'm not having any site reactions. I'm experiencing some mild P.I.D. days, and definitely over-night aches.

But enough about that.

Ladyfingers and Dude are visiting!

We're having a great visit - lots of games, good food, lazy mornings, watching sports on television, spa day, and hugs!

Upcoming stuff:

1. The selections have been made for Em's Slackers Spring fundraising drive! I can't wait to share them with you!

2. Rebismart - electronic injection device

3. Aquafit update

Emily

4 a.m. Blues

And you would have 4 a.m. blues too if you had to get out of bed (in the crisp February morning) to take some ibuprofen for body aches. From the soles of your feet, to the tip of your pinky!

By 8:30 a.m. I was ready to get up and head out to aquafit. I thought that the water swirling around my body might feel good - like a warm bath. Gentle movements, simple stretches, and the relaxed feeling that I naturally get in water.

Today marks the return of P.I.D Days (Post Injection Day).

It's a Crazy Life

That did not go as planned...or hoped...or imagined. My first Rebif shot in over 9 months, is one for the books.

And what did we learn:

Jason has a bad habit of beating himself up.

Things can happen so fast.

I may remain calm, but not necessarily smart.

I think that we were too casual. Or I was too casual, and Jason was nervous. That's more like it. I try to be casual and relaxed when it comes to injections. If I'm not anxious, then Jason won't be anxious. I don't anticipate pain or discomfort, as I don't want him to feel as if he is responsible for any pain that I may experience.

I thought we had it in the bag.

I rolled up my sleeve, found a prime spot in my arm, and reviewed the steps of pinch, poke, release, plunge, remove.

When Jason missed the release, the needle popped out...or something like that. The drug was still mostly in the needle. Some dribbled on the floor, and on my arm.

If you read the beginning of this post, you know what happened next. Except for this part.

I blindly stuck the needle back in my arm and finished the task.

I don't care about what happened. I care about Jason's reaction to what happened.

I hope this is just a blip...

Emily

It's Almost Time

I finally got to the lab for my blood tests! And on the way there, I dropped off my Rebif prescription at the store.

This means that I will be back on my Rebif either tomorrow or Monday. Jason and I have opted for a Monday-Wednesday-Friday schedule for the injections. I'll be responsible for Wednesday needles, as Jason is "OUT" on that night.

I'm nervous. I hope that my body reacts the same to the "poison" as it did last time. I had minimal site reactions and very little of the typical "flu-like" symptoms overnight or the following day. I would love to discover that the Rebif helps my fatigue!

And Air Miles! I would love to pick up an immersible blender so that I can whip up some warm milk!

Hopefully my Pharmacare deductible is close to being filled for the year, and we won't have to put out too much money for prescriptions. It will be a couple of hundred dollars alone when I pick up this first month supply. This couldn't come at a worse time, financially, but is there ever a good time?

Will my stars ever be aligned?

Emily

Streak!

Join us January 29 & 30 at Polo Park Shopping Centre for a Streak Party!
It's all indoors, so no worries about the cold! For a minimum donation of $5, you can get a red clip-in streak put in your hair in support of multiple sclerosis. Anyone who registers for the 2010 Manitoba Lotteries MS Walk at Streak for MS will be entered into a draw for fantastic prizes!

Streak your hair and show your support for people living with MS!

sincere apologies

By this past Friday, I had waited long enough.

I admit to feeling like I wanted to make a point with this whole requisition fiasco. In my mind, the longer I waited to call them and say "Where is my paperwork?!", the worse they would look.

Of course, from the Clinic perspective, "You shouldn't have waited so long to call us".

pfft.

Anyhoo - the call started with "sincere apologies" from the nurse. My papers: blood requisition, two prescriptions, and EDS papers had got tucked BACK into my file. I wanted to ask how this had happened THREE times...but I was nice. I did mention that I had come in person the week before....just pushing a little bit further.

Can't wait to see what next week brings!

Emily

requisition

I'm still waiting for the blood work requisition. Really.

Yet Another Clinic Experience

On December 31st, I decided that I wanted to get back on my Rebif injections. I have been off since March-April, as Jason and I tried to get pregnant. So with all other elements of the story aside, I want to strip this post down to the morons at the MS Clinic.

The Clinic left a message for me on December 31st, in response to my message that I was wanting to start my injections on January 1. I wasn't able to start back on my regular dosage amount and schedule. I would need to provide baseline blood work, and inject on a titration schedule.

Okay. No problem. The requisition for blood work was in the mail, as well as the request for the annual Exceptional Drug Status with the Provincial Government.

Let's skip along...

By Monday January 11, I hadn't received my requisition, but I had received confirmation from the government that they would accept my drug costs. I'm anxious to get started - I don't want to change my mind. So I left another message with the Clinic, including the option of using the test results from blood work that I had done at the hospital on December 14 - it would include everything they needed.

I was assured in the responding voice mail that my requisition is in the mail...

I could get my blood work done at the hospital as results would be faster than if I went to a clinic.

Roll ahead to Thursday, I'm at the hospital for another procedure, and decide to stop in at the MS Clinic and pick up a requisition so that I could stroll over to the hospital lab.

But would they give me the paper - NO!

Either the requisition is in the mail...or they have called up my chart. I could take my pick of excuses, as both were offered.

I know it's in the mail...it has been in the mail since the end of December! I'm here now! I have a stack of requisitions at home but they have the wrong phone number and fax number since the Clinic moved. I wasn't asking to see the doctor. I wasn't asking for anything pertaining to CCSVI.

I came out in the cold and poor sidewalk conditions!

I had forgotten how unhelpful, impersonal, and controlling the Clinic could be.

Emily

Aquafit Unveiled!

I have two sessions of Aquafit under my bathing suit!

And - I am really enjoying it! Who knew?!

I don't feel out of place, even though I am the "newbie" in the class. This particular class has been together for sometime. At poolside, they know where to park the scooter, and rest the cane. They know not to announce to the instructor that they are having difficulty with a particular movement. They probably even know that someone of my height shouldn't stand in the deep end of the shallow area...walking through water shoulder deep is an extra workout!

I was afraid that this class might be full of stationary exercises. I am pleased to say that it is almost all some kind of walking and stretching. We also use foam dumb bells and noodles! We ski, we power walk, we pretend to be a rocking horse, we do bicep curls, and we ride a bike!

And I...rock the noodle!

Yes, the perceived wasteful hours spent on a pool noodle in the middle of the lake, have paid off in spades.

Emily

Remember A&W Teen Burger Day?

This past August27, A&W restaurants across Canada, donated $1 from every Teen Burger sold.

And what did that add up to? How much was the donation from A&W - the swanky burger joint that serves their burgers in foil?

$400 632.12

Wow.

*Regular donations were also accepted at all locations.

Thank you A&W!

Emily

Aquafitness

I did it - I registered for "Aquafitness for MS". Class starts tomorrow.

Ten weeks of 45 minute classes (one class per week).

I have no idea what I have gotten myself into. How many people will be there? How big is the pool? How hot is it in the pool area? I'm nervous, and most likely "over packing" my bag of towels and toiletries. Thank goodness I found my Crocs!

I registered over the phone, and was told that I would need to bring my own volunteer if I needed assistance in the water. This makes me think...

Have I registered for something that I may only "qualify" for in name only?

Emily

Betty and Sally Were Here

I forgot to mention to you that Betty* came here after our lunch last month. With her, came Sally (whom you remember is quiet and attentive and may fall asleep mid conversation) and they stayed here for about an hour. The visit itself was nice, as they gushed about my home and my jewelry.

But why I am choosing to tell you this now is for a not so nice or funny reason.

As per proper etiquette, they removed their foot wear at the door. First, Sally, and her big Winnipeg Winter Furry Boots: I would get tired too if I wore those! And then Betty, and her shoes...and her left leg.

Or so it appeared to me.

Betty wears a plastic brace up the back of her calf. And as it stood alone in her shoes, in front of my door, I was taken aback: it looked like a prosthetic leg.

Betty has mobility problems because of her leg. And I knew that she wore a brace, I just didn't expect it to be so prominent in my doorway. She also uses a cane - and for grander adventures - a walker (which she was recently fitted for).

Hmmm. Eyes wide open.

Emily