caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Thursday, November 3, 2011
I know, I know! It's been ages!
I really haven't forgot about this little blog of mine! So much was going on in the last year with being a full time student that I really was just in survival mode to get through it. It was the most rewarding and thrilling time of my life. I love being a student, and love being a nursing student even more than anything I've done in my life.
And now I'm moving into a new job... not a nurse yet! I have 3 more years of school to get through. But now I'm pregnant! So, my new job of mommy will start in and around March :) I couldn't be happier! Actually, truth be told, I'm much happier now in the 2nd trimester. The nausea and vomitting has stopped! Yay! I feel a little more human again :)
Now, on to the real reason for this blog... my MS. About 2 months into my r0egnancy I started having an attack. The numbness and burning starting creepy up from the bottom of my feet and now sits at about my ribs. My whole baby bump is numb! My stability when I walk is a bit sketchy this time around with this attack. I'm really hoping once I get to the third trimester my neurologist will be correct and this attack will start to recede. I'd like that.
So for anyone who might have my url in their feeds still, thanks for coming back around! I've seen a lot of good stuff in the media lately on MS that I'd like to post about.

Thursday, September 2, 2010
So much change!
Wow! What a whirlwind couple of months. Here's the short story.

First, I got accepted to nursing school! I'll be doing a 4 year bachelor of science in nursing program with will make me a Registered Nurse by the end of it all. It's exciting, daunting, freeky, and something i'm so happy to finally be in the right place in my life to do it.

Secondly, I quit my job! I was there for almost 11 years so it was tough saying goodbye to all the great people and leave behind a completely different career.

Thirdly, I moved to a fantastic townhouse three weeks ago. It has all the space we need and I have my new student room set up. I'm really done with boxes though now. Really done. We moved in a heat wave and I was crashing every day from the heat. Bad timing!!

Next week I go see my neurologist for my next check in for my clinical trial drug FTY720 aka Fingolimod and now apparent Gilenia. I'm a bit leary about staying on the pill considering how I react to getting a cold. It's one thing to be able to call in sick at work but an entirely different thing for school to be sick for 14 days non stop. I wonder if there's a better fit for my changing life now?

And sadly one of my beloved cats is having some health challenges and I'm waiting for final results to see how much longer I'll have the privilege to know him. He doesn't act sick, but we've found a lot of stuff going on inside him. :(
Flick lying down in his usual fashion

Tuesday, July 6, 2010
It's getting fancy that little FTY720 pill!
Looks like Novartis is getting ready to sell the little gem of a pill FTY720 now. My new bottle all of sudden has fancy looking pills!

They changed the pill! Getting all fancy now and ready for the market!

Thursday, June 10, 2010
You'll all be able to take FTY720 now! No more injections!
Novartis did it! They got FDA approval for FTY720 (aka Fingolimod) now known as Gilenia! Honestly, having been on this drug for about 3 years now... I can't wait for all of you to enjoy it as I have. Bye bye injections if you want!

An update from my last post. My heart rate dropped to 58 and exactly one week later, all those side effects ended. Phew. It's good to be back feeling more normal!

So, who is going to try to switch when its fully available?

Monday, May 31, 2010
Back on Fingolimod!
Wow, hospitals have good wifi!! I'm at UBC right now being monitored while I take my first dose of Fingolimod again. So far so good. It hasen't been in me long enough for the heart rate drop, so we'll see how that goes around hour 3 or 4. Here's where I am for the next 6 hours:

My domain for today

Looks comfy eh? And this is the ECG contact thingy that are all over me. Legs, arms, chest mostly. I'll wear them all day as they do ECG's over the day.

ECG thingy

So, I started this morning with a resting heart rate of 68. We'll see where it gets too. I'm a bit freaked out his time around as I know the temporary side effect of my heart rate dropping will be hitting me in a couple hours. And now I have a fresh new bottle of Fingolimod.

New bottle of Fingolimod

Monday, May 3, 2010
Not sick this time!
Yay! I just got back from Maui and I didn't get sick this time! I haven't been on FTY720 (Fingolimod) for a little while now and I hate to say it, but I think it helped having this drug vacation. I did put in the phone call today to get back on it though. I don't really want to tempt fate.

My trip was filled with amazing things! I got to fulfill a lifelong dream of seeing Bottlenose dolphins in the wild!

And then, I was out snorkeling and I could hear them calling. But I wasen't with it enough to raise my head out of the water. If I had, I would have seen a pod of them swimming past me!! Instead I happily followed a turtle and an eel :)

Hey you!

I did some amazing snorkeling. Maui lived up to it's reputation thats for sure!


The humpback whales were still in the are too and I got to see some babies practicing for their journey up to Alaska.



And of course the scenery everywhere was amazing!




And the greatest gift was my new niece was born: Samantha Rae


Monday, March 29, 2010
Other things in life
Sadie had to have surgery. She's 13 and it was pretty rough on her. She had a jumbo lump removed and it turned out to be benign. Phew.


Okay, I'll say it

I miss the Olympics!!!


This was me at a medal ceremony one night. That was soooo great!


And the a great concert broke out!


And I went to a curling match!


There's my fav little guy Quatchi :)


They sure made my home town look lovely!


Friday, March 26, 2010
A little longer drug vacation
After seeing my clinical trial folks last week it was decided that I'll stay off Fingolimod until I come back from my trip to Maui in late April. Once I get back I'll go back on the drug. It's questionable at this point if I will have to do the whole 6 hour under monitor appointment for the first dose. It seems like they are going to try to change that. I'll find out in May. The cool thing is I'm still in the clinical trial I'm just not taking the drug for right now. So I still have to record everything. Pretty cool. I wasent' expecting it to go this way so I'm happy for the little break away from it.

And fundraising for the MS society is going great so far! I just reached $1205.00 an hour ago! I'm thinking about having a cupcake sale in a couple weeks at work.

Monday, March 15, 2010
Let the fundraising begin!
Although I won't be in town for the MS walk this year, I did decide to raise money anyways! And an amazing twist of generosity has toughed me this year.

Here is my link to donate if you can!

AND BIG NEWS! The McIntyre family have generously donated playoff
tickets to my fundraising! So here are the details if you want to win

ANY donations of $50.00 or more will be entered into a raffle for the tickets. The tickets details are:

Canuck Playoff Tickets!!
Round 1 Game 2
Section 112 Row 14
Seats 105 and 106
Game will be between April 16 to 18th

All donations must be in by April 14th. The draw for the tickets will happen at 5PM.
Thank you Dan and Nancy for your generosity!

A clearer head prevails

Okay, so the bronchitis finally ended, the face rash is almost over and I have the approval to go back on Fingolimod. I just have to book it. My decision to go back on came after my head cleared from all the coughing. A head cold, flu or a rash is FAR better than more lesions on my myelin. That is afterall why I'm treating my MS with this drug. No drug will be perfect. I know that. I could take Avonex and have a "flu-like" side effects every week like I see some folks talking about. So, we'll see how it goes being re-dosed. I'm sure I'll have to do the 6 hour monitoring day with the cool heart nurse Holly. She's cool to hang out with at least!

Monday, March 8, 2010
Weird stuff
Weird stuff has been happening to me. And not MS weird. Well, okay sorta MS weird. It's always MS's fault right? So, I got a sinus head cold thingy for three weeks in January. Finally kicked that only to get bronchitis 3 weeks later. The following day the bronchitis kicked in I got a weird rash that started under my chin and slowly started going up my face and all around my neck. Itchy and annoying to say the least.

So, I called the clinical trial nurses. They had me come in to see Dr. Traboulsee that afternoon. They took pictures of the rash to send to Novartis and promptly took me off Fingolimod! Seems like my body was just too overloaded with viruses so they are being cautious and put me on a drug vacation.

So, now it's been a week or so... and my skin looks lovely again and the bronchitis is gone. And yet... I'm stalling calling in to reschedule going back on Fingolimod. I'm a bit... scared. Hmph. And going back on means the dreaded fatigue and heart rate drop. That was a rough go last time around. What to do... what to do...

Tuesday, February 2, 2010
Is anyone doing the MS Walk this April in Vancouver?
I'm going to be out of town when the walk is happening. :( A Maui trip just got booked! Is anyone doing the walk here locally that I could team up with to direct all my fundraising to? Get in touch with me at restperiod at gmail dot com if your interested.

Friday, January 29, 2010
Employment and MS - a survey for World MS Day 2010
I was sent this from the lovely folks at MSIF and thought I would share it.

Dear supporter

In preparation for World MS Day 2010 MSIF is doing a study on how MS impacts on employment of people with MS and their carers.

If you or someone you know has MS, please take this short survey -, the results of which will be released on World MS Day on 26 May 2010. The survey will be available in ten languages when the new World MS Day website is launched next month.

Join the Global Movement. End MS!

Peer Baneke
Chief Executive

And I have to say this

I'm sick of hearing about CCSVI. I love, love, love the idea that there could be possibilities there, but there isn't the hard, cold facts from science to back it up *yet*. I'm waiting for that to happen. For sure. Time will tell.