Did you watch it? If not, please take a moment of your time and watch.
http://bit.ly/ljuz66 <– advance to time index 11:05, and enjoy.
What did you take from those 2:30? That it’s difficult for me to make a sandwich, that I said the words “loosey-goosey-willy-nilly”, and that I am happy CCSVI Trials are coming to Canada, though I’m a little worried that I may not meet the inclusion criteria (e.g.: the trial group will be made up solely of Relapsing Remitting—RRMS– patients, and my diagnosis will have been changed to Secondary Progressive—SPMS– by that time). Where it strays off the trodden-path is that this trial doesn’t involve a drug and is not being funded by big Pharma. This is unknown territory for me, which is only now bringing me to the realization that my recorded comments vis-a-vis being the “magic level of handicapped” may have been kind of irrelevant.
The CBC contacted me via e-mail the night before they ‘filmtroviewed’ me. I had to be up early the next morning so that a jovial and friendly nurse could practice her ‘pokey-stabby’ (thanks again for that one, Cat) and fill a little cylindrical container with blood, ensuring that the right balance between immuno-surpression and overall health is being achieved; nobody’s trying to kill me – though that is sometimes how it feels as I’m retching over my toilet, doing my best to avoid splashing vomit on the toilet rim, streamlining clean-up into a flush and brushing my teeth (and palate…and cheeks… and gums…and tongue). The intention is instead to dampen my immune system in an attempt to hit the “off” switch on my disease. But flipping that switch comes at a price; and yes, I ask myself everyday whether I should keep it up, or whether I should just give my body a break. I am coming up on year 3 – it sure feels like it may be time.
On point – I didn’t take much time to prepare, but did think the breadth of knowledge that I have been amassing with varying levels of intensity for my whole life (seriously – my Dad has MS. remember?) would carry me through without problem. From the feedback I’ve received (though all from people I’m close to), I did ok. Right until I said that block of four words that have now been immortalized by the CBC, that I received a string of ball-busting text-messages regarding, and that my brother-in-law will never let me forget.
“Loosey-goosey-willy-nilly”. The way it was portrayed in the interview makes it sound like I was making disparaging remarks in regards to Costa Rica (and therefore Passport Medical, the medical tourism company that arranged my trip -and yes, it was expensive, but they provided a service: a surgery somehow paradoxically performed on a daily basis yet not available domestically to me). In the end, my family, my friends, and I decided to go for it – I said yes and everyone I know, a bunch of people I didn’t know until we shook hands at one of the fund-raising events hosted by my friends and family showed their agreement and support as well by helping me to afford the burdensome cost the trip would incur. Despite any misgivings I may have had about venoplasty as a treatment for MS, I recognized the limited options I had remaining and chose to give ‘er (as we say out West), going in with no expectations and a lot of hope. My experience was non-miraculous. Medically, you would call it “unremarkable”. But at least I tried. Upon my return home, three months post-op, what I feared would happen happened; my general practitioner (GP), who I had ensured would agree with what I was doing before I went down so that I at least had a professional to assist with follow-up care, has done everything I’ve asked him to, but is limited as to how far he can actually take it. He’s great at writing papers for referrals to imaging labs so that I can have follow-up scans done, but the Québec College of Physicians has instructed any and all imaging labs to disregard requests for scans from MS patients pertaining to CCSVI. To this day, seven months postop, I still have yet to have follow-up Doppler ultrasound done. There could be a clot floating around in one of my jugulars, but because I traveled abroad, or maybe because there’s not enough empirical data on the procedure I had done, or perhaps just as I have really shitty luck – all four imaging labs I contacted in Québec refused to provide the scan I needed.
At first, I was a little upset with the CBC – I said many intelligent things, anyone who reads my blogs knows that I’m not lying. I said one thing that made me come off as a NASCAR fan, and what makes it into the piece? Oy…
I understand why it worked out that way. Nobody likes to feel like they’re in some sort of English class when they’re watching the news. I guess “Loosey-goosey-willy-nilly” gave it a little bit of flavour. Just to clarify though, that comment was in reference to the fact that ANYBODY could have the procedure done overseas, whereas in Canada, we are far more stringent in the selection process for procedures of this elk.
Just to contextualize for y’all… I was in no way making negative statements about my experience in Costa Rica, Passport Medical, or even the procedure itself. There is much that is yet to be discovered about virtually everything involved in the pathogenesis of MS. This is one road, one avenue, that I think needs further study, and less immediate dismissal by the medical community at large.
Keep cool, the summer heat has finally arrived!