Wednesday, 21 May 2014

It's been a long time.....

I know - this is the first post since December! I'm a baaaad blogger....

It has now been almost exactly a year since RA reared its ugly head, and a rocky road it has been. I was doing very well on methotrexate, and was able to go hiking in Tucson last November. Then the methotrexate had to be discontinued as my liver enzymes became very elevated. My rheumatologist (who I really like) decided it was time to try a biologic. The one I would be taking is a TNF (tumour necrosis factor) inhibitor. Basically, in as simple terms as I can put it, the drug blocks the line of communication between the front line and the "troops" of the immune system; the message to attack never makes it to the big guns. Of course, this means that attacks against real, honest-to-goodness baddies such as infections also don't happen. I have to be very careful. The drug will be administered by IV drip at an infusion clinic, with the first two doses a month apart and then every two months thereafter. These drugs are incredibly expensive (I couldn't believe it when they told me how much) and we would have been unable to afford them as our insurance limit would only have covered one dose if they covered it (which they don't). The drug company itself stepped in and offered the drug free under a "compassionate" outreach; quite amazing, no? I am also in the process of applying for a provincial drug plan which calculates your deductible based on household income; it's a long process with lots of paperwork, needless to say. Anyway, I've had the first infusion and am up for the second in about two weeks. The nurses were great and it was smooth and painless for this hopeless needlephobe. I'm hoping it works as things have been really going downhill in terms of stiffness, pain and inability to do certain actions again.

All that being said, though, I'm a stubborn old bird, and have been making every attempt to stay active and moving. I walk or use the stationary bike daily and go to Iaido three times a week. Get this - I'm going to attempt my black belt test on June 10th! It's very strange - I can do repeated actions on the mats yet limp along outside the dojo. I mentioned this to my Sensei and he told me the story of an 80-year-old Aikido Sensei who had to be virtually lifted from his chair and helped to the mats, but once on the mats he was able to do incredible things. He told me I was in good company, LOL! Personally, I think the dojo is magic.

In April we took a long Amtrak trip from Detroit to Albuquerque where we hiked (short distances) for three days then returned. I LOVE LOVE LOVE the train! Zero stress, our own little roomette with complete privacy, meals (vegan) included, incredible scenery and the rocking motion of the train lulling you to sleep. I could get up and walk around as much as I wanted (mind you, with my balance issues I was a bit like a pinball and actually ended up in a stranger's room when the train shifted!). I never want to travel by plane again. We loved it so much that we booked a trip for September from Detroit to LA, where we will drive up the coast to Monterey before returning.

 Back where I belong:

Coming up on June 8th is the Arthritis Society walk. Remember I did it last year and was just barely able to shuffle 1 km? Well, I'm hoping to do at least 3 km this year. If you know me at all, you know I love to dress up for these things. Last year was my "Slow Moving Vehicle" shirt. Here's this year's T shirt design which I had printed at Vistaprint:
This is the front:

And this is the back:

I had a really cool Martian hat that I made for the Martian Marathon which I was unable to attend, so I ran shuffled along with that theme. Now I get to wear my hat!!!!  If anyone wants to donate to the walk, you can do so here:
Deb's Arthritis Walk Page and my sincere thanks. I had occasion to use their programs over the past year and they also allocate huge amounts to research and incentives for specialties in Rheumatology (we are woefully under-serviced in Canada).

Lots of news; hopefully I'll update a little more often from here on in......

No comments:

Post a Comment