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