Tuesday, July 12, 2011

Today Is a Good Day

"Lupus is a life-altering and life-threatening diagnosis" says Catherine Madden, Executive Director of Lupus Canada.  "This incurable disease impacts and destroys many organs in the body and can cause constant pain, immobility, and organ failure just to name a few.  Lupus is seriously under-recognized and under-funded but dedication to new therapies and new research fuels hope for a cure." 

Imagine my thrill when I woke up to the news that Benlysta was approved by Health Canada today. I was expecting to wait years for Canada to catch up to the United States and England. Not to be a downer, I never thought I would see it be approved or that I might have a chance at even thinking about this.

I have an appointment next week to see what I need to do to see if I will be eligible for this treatment - the first direct Lupus medication in over 50 years. The cost is astronomical, I have never made in a year what this price tag says. That will be dealt with later, once I see if I can be on this.
I will be starting an immunosupressant this week, as much as I don't like pills, there is a bit of excitement inside me to try rather than refusing chemo over and over.

The other bit of good news is since making payments for the mobility aids is very difficult, I have started the process on being approved for a real wheelchair that could be funded - this will help so very much. I will also be (against my pride) getting a walker, so when I do my 3 miles maybe the walker will help and not be as awkward as the chair. 

I still have those damn stitches in my face.

At least the walker is red. 


  1. Again I am in tears after reading one of your posts. This time, they are tears of joy. So many good things have come your way today. So many good things to hope for. Hope. What a wonderful word when you feel see it and what a wonderful thing when you feel it.
    Hoping the Benlysta will be covered with your drug card. Hoping the immunosuppressant will be a great help for you and hoping the funding is approved for that walker and chair. So many wonderful things. There will be celebrating tonight. Love you much, our ballerina angel!

  2. Yes. I am hoping this works out and you start feeling better my love!

  3. Whoot for red walkers!! When I thought I was going to have to get one, I was getting a purple one. But I only had to have a cane.
    I will be in touch with you before the end of the week with some info on Centers for Independent Living. We'll see what we can do.

  4. A good day INDEED! Will be on pins and needles waiting to hear how all of this works out. :) :) :) Will keep you in prayer for excellent news.

  5. Praying, wishing, crossing fingers toes and ankles, tossing salt over shoulders and I'll do some research on other good luck rituals as well! As for the walker, it sounds like more fun than the wheelchair. Can you paint it up with some racing stripes or glitter? Although the red sounds pretty slick already.

  6. Yay! What great news. I hope that all goes well!