May 2nd, 2010
i would like to introduce you to my friend Denise. I first found her through this heartbreaking video on You Tube:
But she did not give up. I friended her on Facebook and learned very quickly that this woman is smart and strong and determined. She persevered, wrote a bunch of letters, made many copies of her MRV scans and sent them out to every Interventional Radiologist she could find. She sent copies of research, her “beg for my life” letter as she calls it, proof that venous disease exists before MS and is on the list of diseases that should be ruled out even before an MS diagnosis is made. How about that, huh?
She made this video as a small sample of her stepping and balance, just a few days ago:
I remember those days when I was in that good of shape… *sigh*. Anyway, this isn’t about me. All her research and letter writing paid off. She found a doctor willing to perform the procedure on her! It was done on Friday. And this video was filmed the DAY AFTER:
Can you fucking BELIEVE it!! It makes me cry tears of happiness, but also tears of sadness because we can’t all just go out and get this done. So many doctors are being shut down left, right and center that were doing the procedure in the U.S. In Canada we can’t “go local” and try to find vascular doctors on our own because we need to be referred by our GP. I know my GP would refer me, as I’m getting a venous ultrasound on Tuesday and I know it’s going to show blockages, but the chances of that referral leading to a procedure are slim to none. I can’t hide the fact I have MS and Alberta Health Services has made it clear they will not fix this problem in people with MS. Other conditions, yes. Angioplasties are performed every day in arteries and veins for all types of reasons, but they won’t touch you if you have MS. Fucking neurologists and the MS Society. And anyone who thinks the MS Society is helping with their pittance of $200,000 grants over two years can read one of the many articles (written by doctors, even) touching on that, such as this one or this one and know the MS Society just wants this to go away.
Oh, and THIS is the petition Denise is referring to, if y’all want to sign it!
So that is my CCSVI rant for the day. I’ll just end it by telling you I did cancel my plans to travel for testing because I got into a local clinic here (and hopefully they know what they are doing… they were not trained by Dr. Zamboni so I hope they understand the protocols and don’t miss anything!) but I still have every intention of going to Bulgaria in September. Apparently there is a clinic in Mexico doing it now, so I have an email in to them. They don’t sound experienced so I asked a lot of questions.
This next part is to be skipped if you don’t like open bluntness, don’t have MS or are squeamish. You’ve been warned!
As for my other health issues, the bleeding FINALLYYYYYY stopped after 3 months. I managed to get in to see my doctor right away after my ultrasound results came in, but I still don’t know what’s going on. Next I have to see an OBGYN for a biopsy and hopefully something simple like a UFE (where they kill off the fibroid without a major surgery required). Whatever it is, it is pressing on my bladder so bad I am waiting to hear back from Home Care about putting me on a catheter. I can’t keep up with the bathroom trips and I’m barely drinking anything because of it. I can’t leave the house and I break down in tears everyday because of how much I have to pee and I don’t have the strength/energy for all the trips to the toilet. My bladder doesn’t empty, which is an MS thing, so I have to come back every few minutes and will push on it to try to empty it. It’s terrible. It would also be nice to stay in bed all night and use my EMS machine again! I haven’t been able to because we can’t unhook me fast enough for me to get to the bathroom. I need at least a solid hour of sit-down time to use that thing and I can’t remember the last time I had that! So next time you talk to me I hope to have a bag of pee strapped to my leg. TMI?? Hehe. I have been very stubborn about not wanting to use a catheter, for all sorts of reasons, but I’m over that. I want to be able to relax. I want to be able to eat and drink without fear. I want to be able to leave the house without needing a caregiver at either end to help me get a Depends on and off. And those damn things leak, I don’t care what they say!
Okay, you’re safe. I think.
The next time I see my doctor is May 10, which will be after he receives the results of my venous ultrasound. I will supply him with the same research and information Denise did, showing that venous malformations come before MS and since venous disease wasn’t ruled out before my MS diagnosis, they need to fix it. Wish me luck.
Oh, Denise just posted a new little video!
I finally emptied off my camera’s memory card, and discovered there are no cat pictures on it you haven’t already seen! I haven’t taken pictures of them in ages. Now I need to charge up my battery, which of course died while I was filming parts of Peter Katz’s show, and get on with the cute cat pictures.
Yesterday was my 42nd birthday. I received lots of phone calls, but since I haven’t been in the best of spirits lately (depression appears to be setting in again… phooey) and can’t leave the house anyway, I didn’t even consider making plans with anyone except my family. They all came over (minus my brother’s girlfriend, who is back in Mexico for awhile) and we ate and talked (mostly about CCSVI). My dad picked me up a Dairy Queen Blizzard cake! I can’t remember the last time I had ice cream cake. It was AMAZING. I didn’t ask for any gifts this year… although an iPad, when available here, would be nice. I need work done around here so that’s what I asked for. All money that would go towards gifts needs to go towards Bulgaria instead! Fundraising efforts will go on this summer. The Polyjesters have already promised me a table for fundraising/information at their Mountain View Music Festival this year. And I know they will tell everyone about it and shout it from the stage!
Jason got engaged!! My Jason got engaged!! To his Karina. It’s pretty awesome. I’m so happy for them. It’s not like I ever really, truly believed Jason would marry me someday, or anything.
Peter got married last year, so he’s off the market, too. Sigh.
Me and Peter taken at his show on April 10, 2010
I really wanted to get this entire song recorded, but I knew my battery was dying so I started it later in the song, hoping it would make it all the way to the grande finale, but NO.