Long Overdue Update
I don’t know who - if anyone - is following this blog, but the point in the first place was more for me to have a place to express myself through my writing. I have a ton of things going on right now, so it’s been hard to sit down and write.
On the Ankylosing Spondylitis front, I still haven’t started my Humira. We got approval from Susan’s employer’s benefits insurance company to start it - it’s going to be pretty expensive, about $1600 a month without insurance. If I pick it up a month’s supply at a time, though, it should only be $200 according to the plan. The problem’s been that stupid infection, it took a long time to clear up while the docs sent me in for more tests, and so on. Finally, though, I’m able to eat, sleep, and soon start the Humira. I need to get my TB Test finalized, and some XRays at the U of A. I’d intended to get those done today, but I’m starting a new flare - go figure - and driving is not an option today. I will be getting it done next week, I don’t want to put it off any longer, I want to start the new treatment on the 3rd if at all possible.
Over the last couple of weeks, I’ve managed to get a few things done. First, we’ve changed over the Support Group to being the founding part of the Alberta Chapter of the Canadian Spondylitis Association, and I’ve been elected to the Board of Directors of the national organization. I’ll be travelling this Thursday to Montreal, meeting the other members, and attending the Scientific Conference and Patient Conference there as well before returning home. I have a lot of things I want to get underway, and I’m hoping there’s a sense of urgency on the Board, at least enough to allow me to get some things started here in Alberta.
I’ve been speaking with a >lot< of people over the last few weeks (thanks to the Arthritis Society, I have an office here that I am able to work out of…I’m planning to be in at least 2 half days a week, more when I’m feeling up to it), and we have some real issues here. Remote communities with minimal doctor support, patients who are being told by doctors that they are going to have to stay with light DMARDS - Motrin, Ibuprofin, etc, and that “no one knows anything about Arthritis”…patients being run over by the AISH (Assured Income for the Severly Handicapped) boards, employers trampling all over their rights, just to name a few problems. We have got to get some public awareness campaigning going, it’s pretty ridiculous what some of us are being forced through.
Susan’s enjoying her job, and the kids are taking private swimming lessons on Sundays - the last one is coming up. We’ll take a look at how they’re doing, and if we can, then we’ll put them in with other kids for further lessons, if they want them. The idea was to give them the basics, anyway, so that if they’re ever on a lake, sea, whatever, they will be able to survive.
I’ve been slogging (no other word seems to do the effort justice) through an english translation of War and Peace, trying to keep my resolution to read 3 classics this year. It’s been a trial, and frankly, I’m not convinced that in English, it deserves the moniker “Classic”. It is probably losing a lot in the translation (I have to question poetry quoted in the book that follows traditional rhytmic pentameters, etc, as they are supposedly translated from Russian…what are the odds that the rhythm, tempo, and rhyme, are all going to match properly between the original and the translation? Almost astronomical, considering it happens with each and every poem in the book), and really, the tone and actual exposition are more like gossip about the Russian aristocracy during the times of the Napoleanic Wars, with an occasional piece of good writing sneaking it’s way in. I’m not sure whether to question Tolstoy or the translator, or both…but I will have read this “masterpiece”, and formed my own opinion, before I put it down, probably for good. I can feel literature professors loading shotguns all the way up here. 
I haven’t been playing World of Warcraft so much since June of last year, which I’ve been calling “The Summer From Hell”. And even then, once the summer was over, ending with my sister’s wedding, I was kept busy and in flares up until December…when the infection hit. At best, I’ve been able to do a little bit of playing, getting my character to level 80, but not much since. I’ve recently gotten ahold of a Playstation Portable, probably the best recreational purchase I’ve ever made, I’m getting more use out of it because of it’s portability and the fact I need to rest in bed when the flares are at their worst. Chandler got himself one with his birthday money, and we’ve been playing some of the same games, and we each have a copy of Grand Theft Auto: Vice City Stories, so we can play against each other, too!
Cheyenne’s been working hard at school, her last report card was almost all A’s, 1 B, and that one she is not really interested in the class, so isn’t putting her best effort forth…we had a long chat about that, so I’m hoping to see another Honor Roll report card at the end of the year. She’s playing a bit of WoW, not much, which is a little disappointing (all 4 of us playing, and on an Arena Team could be a TON of fun!), but she’s starting to work on it again.
Not much else to report at the moment, but I will be trying harder to post updates a bit more often!
Kevin Shubert is married with 2 children, enjoyed an IT Management Career spanning over 3 decades, lived in Costa Rica for almost 3 years, and is an Ankylosing Spondylitis "Survivor". For more about Kevin, his family, and his philosophy, visit the About This Site section.
