Ahead of the Pack

About two and a half years ago, Tinkerbell and I were shopping in London one muggy July afternoon. We shared the same July experience every summer since 2002, the first summer my family switched from New York City to London. Although us kids had blue passports (Bloft and Space Cadet are Canadians by birth), my parents remained cursed with the olive green refrigerator-shaped catastrophe they were forced to call their Egyptian passports.

As you can plainly see, the word "Arab" would definitely and embarrassingly trump "Egypt" at JFK's post-9/11 paranoid passport control. My parents were not having it.

Our last NYC visit was the summer of 2001. It was the year I was (in my opinion mis-) diagnosed with Juvenile Rheumatoid Arthritis, which explained the sudden and recurring swelling of my left knee throughout 2000-2001. Swelling is an understatement. It was the size of a volleyball on some days. My left shoulder also suffered extreme stiffness and discomfort. I remember it being extremely difficult to wipe. I say misdiagnosed because - knowing what I now know about Familial Mediterranean Fever - I'm pretty sure this was the beginnings of AA Amyloidosis, triggered by my having never taken any preventative Colchicine.

I may be getting too House, M.D. on you here. Basically, we always knew I had FMF. We just never had documented evidence in the form of a genetic test because it hadn't existed. They discovered the gene in 1997 and soon after developed the genetic test for it. In 2001, we only knew of two hospitals which had the technology available: Children's Hospital of New York - Presbyterian and the Royal Free and University College Medical School in London. Since we spent most of our summer in the United States (up until that point at least) anyway, and since most of said time was spent in New York City, it was natural for us to set up appointments with the pediatric rheumatology specialist there (for reference's sake, my doctor at the time was called Lisa Imundo. I don't know if she's still there, but she was awesome).

We were only going to confirm the obvious, and to make sure that the swelling knee and shoulder phenomena were all part of FMF. Two days before the flight, my knee flared up again pretty badly. Bet you can imagine my parents' sheer joy - they had a cripple to contend with all the way to NYC.

Now, everyone with some FMF background knows that the only preventative medication is Colchicine, which is a common drug used to treat gout. We always thought that it was purely a preventative treatment to help stop attacks from getting too bad. Our family mentality is one of toughing it out. Why take medicine your whole life if you can handle a rough couple of days every few months? So I never took it.

It turns out that Colchicine does more than prevent attacks. It prevents the onset of AA Amyloidosis, which causes the abnormal build-up of amyloid proteins in the vital organs, leading to renal failure. As I hadn't taken any Colchicine in all my 14 and a half years, it was high time that some of that crazy behind-the-scenes stuff begin to peek from behind the curtains. Enter swelling knees and shoulders, stage left.

Pretty uncannily, my symptoms were a dead ringer for Juvenile Rheumatoid Arthritis, too. So really, we'll never know what the hell was going on with my joints. All I know is that since I started taking Colchicine on August 16th, 2001, I've never had a problem with my knee or shoulder. Which is why I think I was just starting to show signs of Amyloidosis, not JRA. Then again, I also spent the better part of three years on a daily mega-dose of penicillin to treat the JRA... Damn it, guess I'll never figure this one out. I remember having to take 11 pills every evening for what felt like forever. Ah, the good old days!

We never did get the actual test done in NYC because of some technical glitch. That did not stop them from literally drawing 12 vials of blood for a medley of other things with random letters and numbers attached. I felt like a goddamn cherub fountain in a French palacial garden.

I ended up getting the test done that winter in London after all, at the Royal Free, with one of the foremost FMF experts, Professor Philip Hawkins. The man is an absolute genius, but was insanely rusty when trying to draw my blood.

Granted, my veins are not the most cooperative type, but I've had my blood drawn often enough to know that they aren't impossible to find. Dr. Hawkins spent the better part of 10 minutes trying to find any vein to draw blood from. He finally just stuck the needle in and wiggled it around until it hit something. Wasn't the most comfortable situation. Even he was in pain. After 5 months of international doctor visitations and almost 15 years of suffering, I finally had my FMF documentation when that needle finally pierced by elusive vein.

Having digressed into my FMF discovery history, I will finally return to my original story.

Now, Tinkerbell has a certain knack for sniffing out trends about a season and a half in advance. That afternoon, as we aimlessly roamed around Selfridges, she decided that she absolutely had to have a pair of Rayban Wayfarers or else she'd just die.

Of course, being the boring classical junkie that I am, I thought she was a total idiot for wanting those. I told he she looked like Om Kalthoum, who was one of Egypt's old-school singing icons. However, Tinkerbell hasn't had a miss since we were kids, and she always tries to get me to join her on her fashion trends experiments. Nevertheless, I insist on debating with her, on saying no, and on grudgedly following in her footsteps much much later after having made a complete fool/hypocrite of myself.

As I am not one to break tradition, this is what I bought myself as a treat the other evening, because they looked wicked:

In future, I will shut the fuck up and do whatever Tinkerbell says, because it is a lot easier than sheepishly showing her my purchases two years too late.