Late Update
The last few weeks have been a challenge to say the least. Lost an uncle, and on the day of his memorial, I wind up in the Stony Plain emergency ward. I was having problems with shallow breath, temp, hot and cold shakes and sweat, and a whole pile more. Dummy me, I ran out of Hydromorph Contin a day and a half earlier; I knew it was somewhat habit forming, but I didn’t expect withdrawl reaction that quickly. I sure as hell won’t forget again 
On top of that, because of the symptoms I was showing, which weren’t exactly matching with Withdrawl Symptom. The doc ran me through the xray, urinalysis, blood work, ECG, and so on, and determined that I might have a systemic infection in my blood. I’ve since been through a whole other battery of tests, but no news yet - I’m hoping this changes by the time I hit Dr. Parrish’s office on my upcoming appointment on wednesday. On top of all the AS symptoms I live with every day, I am sleepy, naseauous every day, headaches, digestive problems from A to Z, and of course, as usual when I have an infection, cold, or flu, it kicks the arthritis into overdrive.
I also have been to see Dr. Maksymowych at the University of Alberta hospital. I hadn’t seen him since I participated in a trial study on using Pamdronate on AS patients, back in ‘99/ought-ought (heh…can’t resist, dagnabit!), but I have been watching his research and career pretty closely; we here in Edmonton are lucky to have him, and AS patients in general probably don’t know his name, but they should, he is considered one of the top AS specialists on the planet. After 3 hours of poking, prodding, testing, bending, and twisting, what it boils down to is that we’re going to give Humira a try. This takes some work - an MRI, XRays, TB test, and of course, the insurance company had to approve. These drugs are pretty expensive, around fifteen hundred ($1500!) for two doses, which are taken once on alternate weeks. It means more injections, but when I tried Enbrel, I got pretty used to it. I’m pessimistically optimistic, preparing for the worst, but hoping for the best. I’ll take his criteria for progress - improvement after 3 months, and triple it, however, before I go back to work (we’ve been discussing having me work from home, the kids need some guidance yet, and Susan is relying on me to keep an eye on pops, who will be 81 this year), and if I can see progress for a year, I will cautiously and slowly enter the job market again.
The issues this raises are huge for me — is there any way for me to resume my career where I left it before the AS hit? I was very successfully in place as a junior executive level at IQ Ludorum in Costa Rica, and I did some contracting since we returned. I’d love to get back into management, working with people, but not the computer consoles anymore - the biologic drugs at the very best will halt the AS entierly in it’s tracks, but there’s no way to reverse damage done to that point. The cartilige fusing the spine together will still be there, for example, but for me, I think 99% of the pain is from inflamation more than anything. I’ve been keeping up my physio best I can, and it has helped some to keep me a little flexible. If I can resume my career, or even if I can’t, do I really want to work in that field again? Or should I try something else? I have slowly been working through Apple’s Certification for Final Cut Studio 2, just in case; video editing for me, is fun. I could also give a try at writing, maybe even write a novel; I’m going to say right now, it may not be a good novel, but I’d love to write one ;). Lastly, I might like to learn how to create or produce video games.
Right now, we’re just waiting for the docs to come back with whatever this infection is, or if it was a set of false positives — they had me test at a different lab after the hospital, and that will help isolate a false positive. Frankly, I hope it’s a true positive in the end, then they’ll know what to treat. Once we have it identified and dealt with, then I can continue on my journey to getting Humira. I’m going to try and keep this updated more regularly, stay tuned.
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.
