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.

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

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

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

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

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