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