Can You Hear Me Now?

AHHHHH! So far behind.

The CCSVI Calgary group is off and running. We’ve had a couple of meetings, and peaceful protests and rallies are being planned. We have some pretty amazing people who are very angry with the way things are being handled by the MS Society and Health Canada and other parties of interest. There is a great group of people with brains, contacts, resources, money etc. on our side. I can’t wait to see what we do. I volunteered to be the Treasurer as that’s my thing. Oh, Health Canada and Alberta Health Services and every agency who is making it difficult, expensive or impossible to get testing and treatment in North America are going to look back on 2010 with shame and embarrassment. Everyone I know about with MS who has been tested so far has CCSVI. I’m pretty damn sure when the world wakes up they will see that CCSVI plays a huge role in MS, and may very well be the cause. Also, everyone I know about who has received the Liberation Treatment has improved. Unfortunately, they have had to go to Poland or India to GET treated. There is one lady in Ontario who found a vascular surgeon in NY willing to perform the surgery after he saw her scans (he said, “I know nothing about MS, but this is a problem, and I can fix it”). If only we could find more doctors like that! There is soooooooooo much money that stands to be lost by the drug companies and the “MS Industry”, there are ugly threats going around and the doctors willing to help are sticking their necks on the line. Thank God for them. Luckily, there seems to be more popping up every day as the facts cannot be denied.

I may have a change in my travel plans regarding where I’ll be going for testing. It’s “under the radar” at the moment but I should know more next week. Also, I’m on the list at a local clinic that will be involved in a trial, but that could be many months away. I am booked for Liberation Treatment in BULGARIA for September. I’m hoping I don’t have to go that far away, but at least I’m on a list and will be treated within a year. Soon the fund raising activities will begin to get me there, but I’m not worried about it yet!

PLEASE sign this global petition to stop the discrimination against MS patients and allow us to get tested under our health care like any body else, without MS, would be able to. Sign it and pass it on! Thanks.

So, this has been my life lately; researching CCSVI, updating our Facebook page, emailing like crazy, reading reading reading and getting worked up about shit. HATE pharmaceutical companies and the MS Society, but you already knew that. Sigh. Biogen is among the worst, LOOK what they are doing now. I love how they’re not including Avonex in their useless comparison study, because they make that drug. Sigh. Even though Avonex and Rebif are similar drugs. Big sigh.

Okay, enough. I make myself crazy with this stuff.

I filed my taxes yesterday! Wheeee! So happy to have that out of the way and scratch it off my 101 list. Which is going slowwwwly. I need to get out more. OH! We’ve held CCSVI meetings at the Legion and I’ve eaten there so that’s one out of five restaurants I’d never been to before hehe. Not quite what I was shooting for, but it will do. Also? Gonna need a passport to go to Bulgaria.

My favourite live music venue in town, The Ironwood, is moving to a new location, an old theatre they are renovating. And the best part is, the new place is wheelchair accessible, bathrooms and all! I’m so happy. I still need assistance to get there and back in the first place, which in itself limits my ability to go to shows, but at least I CAN go. I wish they would hurry up and move. Peter is there on April 10 but I doubt they’ll be moved by then! I need to find someone to take me. I will wear a friggin’ Depends if I have to, I am not missing him again! And he won’t have time to come over and give me a private concert this time!

Speaking of musician friends I looooove, Jason came by the other day. He brought me a veggie burrito from Taco Time and a latte from Starbucks. And a chocolatey goodness treat, some kind of yummy square. He picked up his 2008 tax stuff (I’m really trying to clear out my office, I don’t want to be a storage space for client’s papers anymore!) but has yet to bring me 2009. I suppose it’s coming eventually and I think he wanted to talk about stuff, but 5 minutes after he arrived (late!), Jessica arrived to give me my mini-pedi and leg wax lol. So Jason got to watch all that (I even let him pick out the toenail colour) but left before the underarm waxing began. “You can’t look, I need to remove my top”. “Uh… do you… need HELP with that part?” hee! But he took that as an escape opportunity, he had STUFF TO DO.

Oh, I got a new DVR a couple weeks ago. No charge. This one allows me to watch one show while recording TWO others, if I want! That’s cool because often I like to record shows on competing networks but never could before, I had to CHOOSE. In the case of Glee and Modern Family, I recorded one on the west coast feed and one on the east coast feed. Ahhhh, television. Anyway, this season I can watch both Dancing with the Stars and American Idol if I want to. Not that I really want to watch AI, but I might record it and FF over the singing. Except Casey and Crystal. I only watched one Hollywood show weeks ago when there was about 100 kids, and those two struck me as winners. So I’m happy to see them in the top 10. I’d make a fantastic talent scout and model scout, I tells ya. Things I’ve always been good at!

And the guy from Telus who installed it lives around the corner from me, and gave me his cell #. Said he’d come by and set up my HDLCD widescreen TV when I get it. (Not that I’m getting one, my 15 year old 27″ Hitachi with no HD capabilities works just fine, but he wants me to get one lol)

I’m under this blanket. The pink at the top is my shirt. I spend a good part of my life like this!

You can tell I’m home because I’m lacking in the updates department again.

I’ve still got vertigo. It’s not as bad as it was, but it is still there. Add to that a cold that won’t go away and the fact I’m on Week Four of my period, I haven’t exactly been enjoying my time at home just yet. I went to the doctor on Monday and he sent me for a blood test to check my hormone levels, but I haven’t heard anything, which leads me to believe they came back “normal”, as they always have. (I called, and was told if there was a problem they would call me for another appointment). Well, you don’t skip periods and then get it 3 times in one month and then get it for a month straight if things are NORMAL. I’m on a supplement from my Naturopath/chiropractor that will hopefully help level out whatever is going on with my hormones. He’s also helped the vertigo, thank goodness. The MD said it was probably an inner ear thing and I’m surprised he didn’t prescribe antibiotics for an infection, but he said it just needs to leave my body naturally. So time combined with neck/head massages should do it. And the cold. And the bleeding.

Oh, I’m supposed to get an ultrasound to see about fibroids (which I’m pretty sure I don’t have, from what I’ve read about them) but I need to talk to my home care nurse about that. The woman at the appointment place said they have no clinics with Lifts (I can’t exactly hop up on their exam tables, and you’d think they’d have dealt with that before?) and she didn’t know how they would deal with someone who has bladder issues. I told her “I can’t even hold 4 SIPS of water, never mind 4 CUPS, for two hours!” As if they’ve never seen people with MS or incontinence, or something like that? Geez. I’ll probably have to go to a hospital to get one, but I’ll talk to Gail first.

Exciting news! I’ve got an appointment at a private clinic in Vancouver to be checked for CCSVI at the end of April. It is a shame I have to leave my province and pay out of pocket to get it done, but at least there is a place in this country where they do the proper testing. Dr. Simka, the doctor from Poland who is very familiar with Zamboni’s protocols and has performed many Liberation Procedures, was just there this past week testing MS patients and training doctors at the clinic to test using the proper protocols. Between now and then, they should know even more. There is new stuff coming out every day about this! It is very exciting. I just get very angry and frustrated with most of the media, neurologists, MS Societies and clinics that send out the fear mongering and call it “controversial” and don’t want to get this testing/treatment moving. Did you know Big Pharma made about 8.3 billion off MS drugs last year, and plan to make another 11.8 billion annually by 2011? Yeah. They don’t want to see MS go to vascular surgeons for a non-drug treatment. Don’t get me started on the amount of MS neuros with financial interests in Big Pharma and the big wigs working at Pharma who recently held high up positions at MS Societies and in MS research. Sigh. I’m not linking to stuff here because I’m too lazy, but you can look it all up easily enough. I’ve been spending a lot of time online looking into all of this, and it makes me sick to my stomach. But there are clinics opening every week that offer the treatment, so hopefully by the time I’m tested there will be even more, and closer. Although a trip to Australia would be nice.

We are starting a CCSVI Group here in Calgary. Not sure what our goals are yet, except that we want to see testing and treatment available HERE and raise awareness, but our first meeting to discuss all of this is Monday, March 15. If you are in Calgary and want to attend, sign up at Meetup.com.

Of course, that was written yesterday because I’m SO SLOW at this. I don’t expect the Liberation Procedure to give me the use of my right hand back, by the way, but I’ve read (from people who have had it done) it can help progressive MSers with fatigue, stiffness, spasms, bladder issues and stuff like that. Any relief would be worth it for me, AND no more progression.

My kitties are 4 years old today! At least, I decided their birthday is March 7 after I got them and counted backwards. Their previous owners didn’t even know, if you can believe it. And their birthday is celebrated by Hollywood coming together for a big party! Hehe. I’ve got red carpet stuff going on the TV in the background and my dad will be here soon to watch the big show. I’m going to PVR it because I may want to actually listen to some parts, and I can’t do that when my dad is here! (Too much talking, activity, and “what did he just say?”)

I think my period finally stopped. It’s been almost 24 hours, so I am hopeful.

Big mess up with home care today. My regular girl (I’ll call her Nettie) was here last night and said she would see me today, a little later than usual because she had a church thing. Then this morning I received a call from Mary, who told me she was scheduled to come. I insisted that Nettie was already set to come, so please don’t bother. About an hour later she showed up anyway, insisting the office told her to come. So I called the office, and they told me Nettie had booked off for today and tomorrow, and that Mary was coming again tomorrow, and some strange lady I don’t know is coming tonight. I was all, I just saw Nettie last night and she was coming, so WTF? Also, Mary isn’t trained in the Range of Motion. They said they would get a supervisor out the next day. So Mary helps me with the personal care and afterwards I said “see you tomorrow”, and she was all, What? I have school tomorrow, and I’m all, WTF. Then Nettie walks in. ARGH! The bottom line is home care screwed up again. Nettie is back to my regular schedule tomorrow but she lost out tonight because of their mess up.

I have, I think, 6 regular caregivers. Nettie 5 mornings/week and 3 evenings, Nia 4 evenings, Gerta 1 morning, Grace 1 morning, Mabe once/week for shopping help, and Traci once every two weeks for homemaking. Which I hope will change soon, because she is terrible, talks too much instead of working, and is super slow. So, six people when things go right. I BEGGED for Grace, she was my favourite pre-care facility, I used to get her every second weekend. So when she was sent here as a fill-in one Friday morning, I begged her to make room in her schedule to make me a regular.

Well, I’m off to watch Oscar stuff. I will be organized soon with my camera to get kitty pics when this vertigo stops and I don’t have such a hard time focusing and getting on with my days!