February 15th, 2011
*disclaimer* i’m still not doing caps because i’m one handed on a macbook and “shift/letter” is not often doable on this keyboard!
i have booked an appointment for Round 2 of angioplasty for CCSVI. i will say it now: i wish like hell i had waited and not spent all that freakin’ money to go to costa rica in july!! i really don’t believe they knew enough yet, and that entire experience has left a bad taste in my mouth. $18,000 later. i was definitely “undertreated” (as many of us “pioneers” were. no fault to the doctors, they just didn’t know better yet). not to mention they now have better accommodations and the transportation company is more organized and has more equipment. i did not have a good trip or experience there, to be honest. the hospital and care was fantastic, the people were lovely, but i had an awful trip and was mostly uncomfortable. when i just wanted to be grateful.
so, i’m going to try it again! this time i am going to a clinic in california where the doctors really know their stuff. i am very confident in this place, 100%. i know many people who have gone, too, and they’re all very happy. i am, once again, raising money to help fund this treatment and trip. can you believe we even have to leave the country and pay out of pocket for what would only cost our public health system about $1,500?? as opposed to the average $30,000/year, per MS patient?? it’s CRAZY.
Wendy said some good stuff during a recent meeting in Ontario:
i’m going here: Pacific Interventional
i have done my research, trust me! one thing i like about this place is that they are phlebologists (vein experts) and interventional radiologists and have been doing this stuff for YEARS. now they do about 20 ccsvi procedures/day, and the doctors are up on the latest of the latest techniques. i wish i could wait a year and go, when they know even MORE, but i can’t wait. i get worse every day i wait. (”time is brain”). i may need another treatment someday, but in the meantime i am confident further progression can be stopped by these doctors!!
my last ultrasound showed that my right jugular really needs to be ballooned (it wasn’t) and my left is “far from perfect”, although still better than it was. most of the subtle improvements i did feel are gone, some are still here, and my ms continues to progress as i’m able to walk less and less. i’m losing the feeling in my left foot/leg as well, which scares the shit out of me. so, i’m just doing what i feel i have to do to save my life.
If you can spare a few dollars, and I know most of if not all of you can, (skip your latte or brown bag it this week!), pleeeeease help me out. Fingers crossed by the time I need another angioplasty they’ll be doing it for MSers in Canada, but in the mean time… THIS IS HOW YOU CAN HELP. If you’re not a fan of online transactions you can EMAIL ME for my mailing address.
THANK YOU. AGAIN.
i’ll be doing other fundraising things in the near future that don’t just involve begging for money. watch this space!
it pisses me off that they keep saying “the cause of ms is unknown” while they continue to put millions of dollars into drug research for the unproven “autoimmune theory” while trying to discredit this one.
Anyway, enough about all that. i haven’t even written since the new year! happy new year! seeing the polyjesters on new year’s eve was epic. they were fantastic, as always. sheldon, jason, and his wife karina opened a cafe in carstairs in january! that is now their full time jobs. i went for a visit opening week. it’s such a great little place, and they’ve got mom carol in there baking up a storm now! between her baking, the soups/sandwiches of the day, and the fantastic lattes, not to mention the best staff ever, it is THE place to be in carstairs. the cafe radio!
things are going well in the caregiver department. since hiring nancy and thalia, life is much better. i will cry if thalia moves!!! having her and her husband right upstairs is a godsend. her hubby has done so many little things around here that have made my life easier (he’s a woodworker) and they are SUCH a lovely couple. but they have a child and aren’t going to stay in this building long when you can rent an entire house for pretty much the same amount. and nancy is just wonderful… so positive all the time, she keeps me going. taking me out in her vehicle is awesome, too. how do you think i got to see the cafe in carstairs?! we also take regular trips to my chiropractor and my doctor. next week i’m going to get my hair done. so life is better, for sure, since i got the self-managed care going.
i’m lucky in that the way it works for me is that home care still sends me someone every morning for exercises, shower/dress, lunch etc. so i don’t have to worry about hiring someone to do that. i know nancy and thalia could handle it, but 7 days a week i MUST have that help, and it’s just easier that i not need to worry about it. the girls home care sends 6 days/week are great, but saturday is my day from HELL. i never know who is coming or what time, and i rarely see the same person twice, and they rarely understand english or have common sense. it’s a nightmare. i wish i could skip that day altogether and just sleep through it lol
today my home care told me she had trouble getting paid for one of her visits here because according to the office i had “cancelled that day”. wtf? luckily she was able to make them dig deeper by reminding them that i DON’T cancel unless i’m not even here. “she can’t shower, dress, or even get food without help, so why would she cancel?” really. shitty reminder of my situation, but whatever. maybe that will change soon… i’m trying not to get my hopes up too high after what happened last time, but it sure would be nice to not need so much care every day.
i am down to 3.0 mg of my sleeping pill/night! from 15 mg. sometimes 22.5 and i’d been known to take even 4 pills in one night (30 mg.) i am soooooo happy i am getting away from that drug!!!!!!!!!
i’ve got the grammy awards on in the background while typing this (i recorded it to watch whenever). justin bieber is on with jaden smith and they are cutting to will and jada. i can’t help but think how dj jazzy jeff’s children feel. (”gee, thanks dad”)
also, i like justin bieber. i’m not a fan of his music, but i really quite like him! he’s such a little gentleman and so bloody talented.
speaking of music, duran duran has a new album! and it’s fantastic!! and john taylor talked to me on facebook AND twitter. it only took 28 years for him to notice me, but it happened. that’s right. thank you, social networking.
so, i’m going to go now… let’s be honest, i probably won’t update until after i get back. unless i get into a big photo uploading mood, god knows i have a ton. but it will be an AWESOME update because i already know this trip is going to be so much better and way more fun than costa rica!!!