Okay, I'll say it
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 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...