Stronger than plastic

I sat for my injection tonight around 10:30.

I'm on Avonex pre-filled syringes. One a week in a quad. Alternating legs weekly.

I'm developing a strong fear of injections. At 1:15 I managed to push the #$&*ing button. I took a break in there to drink a glass of wine, but it didn't help manage my stress. Music, breathing, nothing helped.

Some nights a tiny piece of plastic and a few metal springs feel so much bigger than me. Thank whatever deity you like that this is a rare occurrence and most Fridays I feel stronger than plastic.

wormhole

Hm...

I got up at 5:20 this morning. Got myself ready for the MRI. Took a sedative. Registered at the hospital. Had a nice tech allow me to bring someone in with me (she saw the panic on my face, I'm sure, when she suggested they don't normally let people in).

Sat in the belly of the beast for around 28 minutes before having to come out again and reposition. Spine first, then brain.

Not having music was not fun, but having someone there to grab my toes was great. Nance is my rock.

This time the sedative actually worked. I wasn't as panicky as I have been other times. I guess the fact that I'm 45 lbs lighter than the last time I was shoved into the cigar tube also helps. And I'm in a better frame of mind. Overall much happier in life. So, from start to finish, the scan wasn't so bad. It even seemed shorter than it was. No one told me not to swallow (if you tell me I can't swallow I panic and swallow). No one told me not to breathe deeply. It all worked out well. I fought back some panic, but it wasn't too hard to overcome this time.

So there. Done.

...oh, and the 7 hour nap afterwards was also good.

Home for a rest

Home again, home again.

My MRI is tomorrow morning. To say that I'm a little nervous is laughable. I'm a lot nervous. I have a tiny prescription of lorazepam to calm me during the scan, but it didn't work well last time (I got drowsy after the scan), so I'm not pinning all of my hopes on it.

Nance is coming with me to the hospital. I've relied on music to get me through other scans, but this hospital doesn't offer piped in music. Bummer. At least I'll have comfort in a friendly hand on my feet.

Logically, I realize how silly MRI claustrophobia is. When I think about it, I'll just be flaked out on a table in an open tube. I can get out on either end. I'm not locked in. The scan is beneficial. Nothing will hurt me. But none of that quells the fear that rises in my chest as the wee table is rolled into the machine. Small spaces are small spaces. They all feel like coffins to me.

On a much more positive note, I had a great trip home. It was really fun to surprise the folks (even the ones with no big reactions) and made my heart happy to see my dad enjoying himself so much on Halloween. I take after him in that way - I love Halloween. The creepier, the better. None of these fluffy, friendly-faced decorations, please. He and my step-mom have more Halloween decorations than some small stores, so he and I ended up sitting on a spooky front step amidst artificial fog and assorted ghouls and skeletons, waiting to scare the daylights out of kids. [Note: no children were harmed in the making of this evening]. It was also fun to surprise mom by knocking on her door trick-or-treating and to surprise N's mom by pretending to be a dummy in her haunted house basement (N's dad pretended he had set us up while she was out shopping). Bonus vacation points for getting to meet my new furry brother, Sam.

It felt like a really quick trip and I didn't get a chance to do a few things I'd have liked to (didn't get to hike at all, see a few people I planned on visiting, or get shopping with mom), but overall I'm so glad I went.

At least I'm going into tomorrow's MRI with tons of fun recent memories to mull over.

damn

I get the logic behind having MRIs, but I don't have to like them! :)

Time to visit the cactus

I have my annual neurologist appointment tomorrow.

Once I touch my nose with my eyes closed, walk a straight line, and do some reflex testing (almost kicked him where the sun doesn't shine one - geez don't stand in front of me and whack my knee!), I plan on asking him what his thoughts are on CCSVI. I've always liked my neuro, so I'm a bit nervous that he'll shut me down. I'm not looking for someone to say "yes, I believe this is 100% useful and will completely prevent further damage to your nervous system." I just want to know that he's listening closely to the ongoing conversation on the topic. I know that he has sent patients for MRV testing in the past, so we'll see how it goes.

I'm strangely comforted that this man keeps a variety of cactus plants in his office. I like that there aren't frilly plants or pastel paintings meant to put me at ease. I like directness. My neuro is direct. He's a cactus.

Semi-related, is it crazy that my biggest fear is he'll suggest another MRI? Yep, brain and spine could have more damage, but that damn box kills me. I watched the rescue of the Chilean miners with one eye closed whenever they showed shots of the men underground. I don't like elevators or tunnels. MRI machines are not my friends.

As my appointment approaches, I always take time to reflect on the past year. I spent a few months this winter with electric legs whenever I worked out and looked down. I've started feeling the dreaded fatigue now and then (not often, touch wood). But, all in all, I've been very fortunate so far. Sure, MS sucks. I have frustrated moments and can't help but worry over my future, but my body's path is not set in stone and I do what I can to take care of it.

I'm a technology nerd, a lover of the great outdoors, an amateur photographer with bad horizon lines, and a writer of bad poetry...but, that's it.

I'll keep on top of all areas of research, not just CCSVI, but I will never take on the role of an MS patient.

On second thought...

Rather than do all of the leg work behind the conflicts of interest at play in politics (I am, after all, mid-30s...and that could take forever), I figured I'd focus on the positive.

So, the good:

1. New conservative provincial leadership in the works. Okay, it's not hard to tell that I am a die-hard left-leaner with socialist tendencies, but in this case our Tory premier-elect has said he will push the provincial government to create a $500,000 fund to help those seeking CCSVI treatment. In the long run, that may not seem like much, but it's more than any other province has promised so far. So, as scary as it may be for me, I welcome our new alien overlords.

2. The MS Society, despite being morons throughout some of this, is setting aside $1,000,000 for a clinical trial of CSVI treatment.

3. I have fantastic people in my life. Truly. Interested and informed and always willing to tell me when I talk about this stuff too much. :) I am very fortunate.

All in all, good news.

P.S. The CCSVI Alliance website has great information for the uninformed.

P.P.S. The CCSVI in Multiple Sclerosis group on Facebook has done great research into the path I was headed down - the conflicts of interest behind the CIHR decision.

Conflict of interest, come on down!

Canadians with MS want choices. The Canadian Institutes of Health Research, by not funding studies into CCSVI, has effectively offered none. Zip. Zero.

It's no shock to anyone that many of the doctors on the CIHR's panel of experts found themselves smack dab in the middle of conflicts of interest that they chose to ignore. Let's see some highlights, shall we? Don't worry, no slander here - this is all public knowledge and sourced.

Now, the first doc on the list isn't on the panel of experts, but it would be a vast oversight to skip him.

Introducing Dr. Alain Beaudet, President of Canadian Institutes of Health Research. Dr. Beaudet served as CEO of Fonds de La Recherche en Santé du Québec (FRSQ) from 2004-2008 [1]. FRSQ is a research funding agency whose largest parter is Pfizer [2]. Beaudeat appointed the vice-president of Pfizer Canada to the CIHR's governing council. Okay, call me crazy, but isn't that just...bizarre? Interestingly, there's a nice little snippet in an article called "Governance of conflicts of interest in postmarking surveillance research and the Canadian Drug Safety and Effectiveness Network" [3] on this point:

The appointment of Dr. Bernard Prigent, vice-president of Pfizer Canada, to CIHR’s governing Council—the first pharmaceutical representative to be so appointed (25–29 article's citations, ignore)—and statements by CIHR president Dr. Alain Beaudet in the context of this appointment, emphasizing the need to intensify collaboration and even to align CIHR’s “agenda” and “vision” with the pharmaceutical industry,(30) do raise the question whether CIHR remains sufficiently independent from industry to operate the DSEN.

[I started bolding the important parts there, but it became illegible]

Let's connect a few dots here. This report suggests that CIHR may not be sufficiently independent from the pharmaceutical industry to operate the national Drug Safety and Effectiveness Network. So, whose interests are being served by a board so closely linked with one of the largest drug companies in the world? Is there a shot in hell of Canada even looking at an alternative to drugs? Profitability for treating this disease remains sky high while profitability for stopping it is not.

Dr. Prigent, the Pfizer man who was appointed to CIHR's governing council…well, it turns out he's a registered lobbyist for Pfizer [4]. His position is to sway CIHR and other research spending programs. So, now he can lobby himself! Brilliant. [see also, 5]

Who's up next?

Maybe Dr. V. Wee Yong. Ooookay. Shotgun. Barrel o'fish. Coming soon...

1. http://www.cihr-irsc.gc.ca/e/10308.html

2. http://www.frsq.gouv.qc.ca/en/financement/Programmes_2009_2010/s17_fiche.shtml

3. http://www.openmedicine.ca/article/download/371/337 [PDF format]

4. https://ocl-cal.gc.ca/app/secure/orl/lrrs/do/_ls70_ls75_ls62_ls6c_ls69_ls63_ls53_ls75_ls6d_ls6d_ls61_ls72_ls79?_ls72_ls65_ls67_ls44_ls65_ls63=600939&_ls73_ls4d_ls64_ls4b_ls79=1265035844584&_ls6c_ls61_ls6e_ls67_ls75_ls61_ls67_ls65=_ls65_ls6e_ls5f_ls43_ls41&_STRTG3=tr

5. http://www.thecoast.ca/halifax/bernard-prijent-pfizers-inside-man/Content?oid=1503474