Can You Hear Me Now?

I forgot to mention in my last post that when I saw The Polyjesters, they played their song “Manjula”, which I had forgotten has the line “Costa Rica’s gonna blow you away!” in it. Being the person who spent hours reading and editing their lyrics for their last CD you’d think I’d know that, but I had forgotten, so that was an awesome sign. They looked at me and grinned while they sang the line, and I was all, oh, did they change it for me? But no, that’s the lyric. Other good signs recently include my home care worker’s brother, who lives nowhere near here, just happened to be walking by as she was leaving, so she called him over to introduce me as “he lived in Costa Rica for 10 years”. Then my mom’s co-worker saw a bird she had never seen before, looked it up online, and it’s originally from Costa Rica. WHAT are the chances? Signs.

Last Monday was a great debate in the House of Commons about CCSVI, and MP Kirsty Duncan read my email. I TOLD you she was my BFF. Kirsty Duncan for Prime Minister! If you live in the Etobicoke, Ontario North riding you must vote for her next election.

So, I am moving this week. My mom was here this past weekend and we went through ALL my clothes. Shawna came over and left with a new wardrobe. I sent six big bags to the Salvation Army. It is DONE. For now… I actually discovered a lot of clothes that will be great to wear in Costa Rica! I mostly wear yoga pants (a size too big) these days because I do the stretching exercises with home care every day and they’re super easy to pull up and down for the toilet. All my summery pants aren’t as easy/loose fit, but, I’m predicting I won’t need that emergency access in Costa Rica after treatment. I’m seriously keeping my hopes up higher than people say you should, because I believe in the Law of Attraction and that I can create this better life. This is really it for me, I know it is! I’m going to get my life back! I watched Kerri and Omar running today. She is an Aussie (3 months Liberated) and he’s from England (one week Liberated) and they met up. The internet is bringing CCSVI friendships together like crazy! I can’t wait to meet the gang that will be in Costa Rica at the same time as me, I’ve been chatting with a lot of them on Facebook.

Hmmm somehow I went from talking about my move, to my Liberation in Costa Rica. Not sure how that happened?! Anyway, yesterday I went to the new apartment with my O/T and the guy installing the bars in the bathtub. Sam was mighty impressed with the new digs, that I could even go right into the bathroom and up to the sink in my wheelchair (NOT THAT I’LL NEED TO) and even through the kitchen. It’s the same sort of galley kitchen as here, but it is a good 6 inches wider than this one. And White! Appliances! Cupboards! New Floors! Counters! I’m really going to like living there. Except the entrance needs to be re-paved drastically, it was a wheelchair dance to find the safest route to the door. Argh. This whole complex needs repaving, the parking lot is terrible!

Anyway, I get keys tomorrow and do the walk through, then we start moving over boxes. Mom is coming tomorrow and staying through the weekend. The BIG moving day is Sunday, if you’re around… pizza, beer…

That was written several days ago, naturally. It is now Saturday and we are in the process of moving. My mom has been staying with me since Wednesday and has taken over loads of stuff in a grocery cart! She’s already set up my kitchen. My brother was here on Thursday and took all the boxes over. Not that there are many… most things can be tossed in a cart and wheeled over. My friend Lisa and her hubby Tim are coming over soon, hopefully the bathroom shelves and storage room can get moved. And anything in a closet that hasn’t been moved yet.

Tomorrow some Polyjesters are coming (Jason’s fiance is having her bridal shower, so it’s not like the boys can go anyway!) and some other friends and we will get ‘er done. I have to go sort my office now and get a few things done. I’ll see ya in the new apartment.

TWO WEEKS UNTIL I AM LIBERATED!

There are so many people on my Facebook friends list that are getting Liberated these days, I can’t keep track! I feel bad for the people who are just looking into it now… the waiting lists are insane. I was relatively late in the game to sign up for treatment but at least I’m not trying to get on lists now and being told I’ll be waiting until 2011. I’m sure Dr. Simka in Poland (the most well versed in this) is 2012. One month for me! One month until Liberation! Hopefully more clinics keep opening. It doesn’t look like they’ll be allowing it here anytime soon.

With the help of family and friends I have received about $8,000 of the approximately $20,000 I need for this life saving procedure. It’s like I read in a newspaper article yesterday, the 5-10 years of research they want to complete before they’re willing to make it available to us is JUST.TOO.LONG. “People will be in wheelchairs by then, and those already in wheelchairs will be dead”. Enough said. I’m going to save my life. I swear I am getting worse by the day, especially if the past 24 hours is any indication, so Liberation cannot come soon enough.

Besides the crapfest which was the past 24 hours, a new symptom has reared its ugly head in a whole new way (it used to pop up sometimes… now it’s life altering). OXYGEN. By the end of the day or when fatigue sets in especially, I’m not able to hold a conversation. The exertion is too much for me. I have trouble taking decent breaths and choke a lot more than I used to. These are definitely symptoms of CCSVI so I hope they clear up after Liberation. I found out that my severe morning hiccups are part of this, too! Good to know. Various home care workers have told me it means “someone is thinking of you” but I don’t know who would be thinking of me at approximately the same time every morning.

Speaking of home care workers, the one I had today to help me get to/from the mall told me a little about her life. She married her cousin when she was 19. Her sister married a cousin when she was TWELVE. Both her brothers married cousins. You see, they do not marry “outsiders” and keep it in the family. Hmmm….

Well, I guess we are all related, as Dr. Wayne Dyer puts it: “Two people made you, four people made the two people who made you, eight people made them, etc. etc.” so if you go far enough back, we are all family. But STILL.

My friend Heather came over on Tuesday to watch my morning routine with Grace so she sorta knows what to expect in Costa Rica. I picked up our tickets today. My passport arrived on Monday (another scratch off the 101 list!). It’s all happening! Heather swears up and down she will not get sick before we leave. I told her to take Cold FX every day, I will buy it for her, whatever! Just don’t get sick! She says she won’t so I will believe her.

Part of my rough 24 hours happened last night when I almost fell. Falling for me now would be an even bigger deal than it ever was in the past. Anyway, I can barelyifeven walk without my AFO on, so after home care leaves (she removes it) I like to use my Chi Machine and then I need to lock the door behind her, then make it to bed in one piece. My Chi Machine is acting weird lately and moving across the mat as it shakes, and last night was really bad so I gave up because when it moves it hurts my ankles (your leg position is important with that thing, if it doesn’t stay still it may be time for a new one… well worth the price). Anyway, I got up and walked to the door and thought “man, this is getting harder again”, locked the door, slowwwwly turned towards my bedroom and stumbled. I JUST managed to save myself by landing with my back against the wall and slamming the breaks on my walker really fast. My cell phone and water bottle went flying and I could feel myself slipping. I was thinking, “oh no, here I go” and wouldn’t that have sucked, with my cell phone out of reach! But I put as much weight as I could on my right leg to pull my left foot into a stable position. Then I made it to my bed and collapsed in tears. Those “holy shit, that was close” kinda tears. With my water bottle on the floor in the hallway (which I need to take my night and morning meds) and me afraid to try walking again, I knew I had to call someone (phone on bedside table, thank God). I chose Shawna because a) she’s an awesome amazing friend and b) she lives close and has keys. So I called her and felt like an idiot asking her to come help me for what seems like a silly reason! Of course she came by and helped me get settled. How pathetic would you feel if you needed someone to drive over to your place because your water bottle and cell phone is on the floor in the hallway? Yeah. Welcome to my hell.

That was yesterday, and today I had another “accident” with my bowels. Fourth time in two weeks. Seriously about the worst thing that can happen in your day. I’m still waiting for my evening home care to come and clean me up. It happened about 5 hours ago. So, yeah, not a great 24 hours. And tonight I am not using my Chi Machine or walking without my AFO. I will take it off myself while sitting on my bed. I’m not feeling so steady.

Tomorrow is another day.

And so it was. The above was written on Thursday, and Friday was a MUCH better day because I got to go see THE POLYJESTERS!!! I did feel stronger in the morning but by 2:00 I was done for the day. BUT you don’t miss an opportunity to see The Polyjesters when all the help you need is willing and able to take you. Shawna came by around 6:30 and we got me all ready and out the door. Getting to the new Ironwood location was a hassle because the sidewalk was not wheelchair accessible (must call the City about that) and then once inside I found out the venue itself is not the wheelchair accessible place I was promised by the staff it would be. The bathroom, according to Shawna, has a W/C accessible stall. BUT, there is a step to get INTO the bathroom, so WTF good does that do? Good thing I wore my “justincase” Attends underwear. Plus, the bathroom is right at the front door, and there is no way in hell to get from your table to the bathrooms in a wheelchair once you’re in. I had to roll behind the bar to get to my table, and then was told “oh! We thought you’d come in the back way, there is a ramp beside the stage and your table is right in front of the stage”. So I had a great table, and sure enough there is a ramp beside the stage heading to the back door, BUT, as we found out when we left that way, the ramp leads to the back entrance where there is a gigantic step (that’s STEP) down. Luckily when I cried out “oh no, a STEP!” Jason and Aaron came over and assured me they could carry my chair down it. So I closed my eyes and let out a little yelp as they brought me safely to the ground. Remember, not exactly 90 pounds over here.

Accessibility (and the fact yet another restaurant doesn’t understand what “gluten free, no bread with my steak sandwich” means to a person with Celiac disease like Shawna) aside, it was an amazing show!! My mom and Bob joined us, and I got to see my friend Kim and her hubby that drove in from Red Deer. And a few other Poly Regulars like Damien and Kelsey and the PolyParents. The show was one of the best I’ve ever seen! Scott Duncan was there to join them on fiddle for several songs, including their “Orange Blossom Special” they used to always play when they were regulars at Epcot Center in Florida back in the day (called “Fiddlestix” back then)… complete with a medley of Disney tunes and corresponding dance moves. If you GO HERE you can scroll down and preview a taste of it, song #9. But that won’t be enough, haha! Preview song 8 too, and tell me you don’t want to see that live on a stage right in front of you! I want a Scott Duncan on my speed dial. I also have a photo of him from 2004 licking his own nipple. I need to remind him of that.

Anyway, in case that isn’t enough of an indication, it was a very high energy, fun and mind-blowing show. I lasted with my head up the entire time, but left the second the show was over. Made it home in one piece and was in bed at 1:00 am! Mom and Bob spent the night here and we all groaned when home care showed up at 9:00 am.

Now it is Sunday, and the past couple days I have decided it’s not worth the risk of walking without my AFO, so I haven’t used my chi machine at night and keep my brace on right until I get to bed. I am better able to walk in the morning, after a night of rest, so getting around until home care puts on my AFO has been okay. Also, for my morning Chi session I found a cushion I have fits perfectly between the machine and the wall to keep the machine from shuffling away, so that’s good. I do hope the problem with my foot/leg is temporary (again) and I’m able to walk (again) soon. The EMS has to get working for me (again!) We took a break from it when my bladder was too crazy and we forgot to get back into using it. So we fixed that today and No More Breaks!

CCSVI update: I just got another call from my BFF Dr. Kirsty Duncan, the awesome Liberal MP who is working her arse off for us (she has not gone to bed before 4:00 am the past two weeks). I had sent her an email about what that MS Society funding of CCSVI research really means (what a joke) so she could be up to date before the debate tomorrow in the House of Commons. She’s also aware of the situation with Barb Farrell (that’s manslaughter, plain and simple) in Barrie and has lots of personal stories to talk about. The more stories that get out there, the better. Soon even the general population that isn’t affected by MS will sit up and take notice. I told Kirsty I’m booked into Costa Rica for treatment July 10 and I thought she was going to fall out of her chair, she was so excited for me!

I want to publish this before my evening home care arrives, which will be in about 10 minutes! Ciao.

It’s the end of May and we had a snow fall in Calgary yesterday. It’s gone now, but it is cold and rainy and absolutely ridiculous. It’s JUNE this week, people! Where’s our sunshine and roses?

I’m not all sunshine and roses these days. Nope. I’ve been doing some thinking about my life, brought about by listening to Peter Katz’s incredible new CD. Please watch this video and listen to what the song is about:

So, basically, it’s about a guy who was diagnosed with a terminal illness and instead of panicking about all the things he still wanted to do in his life, he was able to say, hey, I’ve been doing it all along.

And I’m all, you know, a few years ago I could have said that. I was living my life to its fullest, MS, wheelchair, and all. That great weekend with Rob Szabo and the band at the South Country Music Fair. Traveling to Toronto and Montreal after that, to see more live music and visit my friends there. What an awesome life I was living, and if I had died a few weeks after that, I would have died doing what I love and living a full life. Friends, live music, travel, shopping, eating out, lattes, working when I wanted… But NOW? I feel as if my life has been robbed from me. Don’t tell me to “live your life to the fullest” or “live each day as if it’s your last” or whatever the hell. I CAN’T. I have no fucking life. It’s been taken from me and now I get to live out the rest of my days in this fucking chair in front of my TV, unable to leave the house on my own, struggling to get in and out of bed, unable to carry on a social life outside of this room, Facebook and Twitter, unable to LIVE. a LIFE.

So, that’s how I’m feeling these days.

I honestly believe the Liberation Treatment is my ONLY hope to get some semblance of my life back. There have been a lot more Canadians coming back from Poland, Bulgaria, and other treatment locations in recent days and I’m hearing soooooo many great stories it’s making me cry every day. One man in Halifax, who is secondary progressive like me, is able to walk with just a cane again. He said the procedure put him back about 5 or 6 years, mobility wise. I would give my eye teeth for that! FIVE OR SIX YEARS! You know what I was doing 5 or 6 years ago? Living a damn good life, and probably taking a lot of it for granted. What I wouldn’t do to go back there to cane-land…

So, that being said, if you are on Facebook please join my Hope for Liberation group, and remember how in the past I used to do those Pay It Forward projects at Christmas, to raise money for people in need? Well, now I am in need. I think I have lost a lot of readers over the years due to my lack of updates and most likely my overdoses of MS talk and too few cat pictures, but if any of you are still out there, this is the time to let me know. I could use a little pay-it-forward myself to raise money for my Liberation, where ever that ends up being. Flights for me and a caregiver, hotels, car rental if needed, food, the procedure itself… I’m looking at about a $20,000 price tag. Which I will gladly go into debt doing for the chance of getting my life back. But I sure could use some help! If you can spare a few dollars…

THANK YOU!!

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.

So much is going on in the world of CCSVI I am super busy! I made our website and am keeping track of the email list in a spreadsheet and my own address book. We were all over the news on Friday after our protest! I even got in on the action when Global News interviewed me and used about 3 seconds of that interview in this piece. Please note my home care came at 9:30 and my handi-bus came at 10:20 and there was no time for make-up and my hair was wet, and dried out in the wind. Thank you.

Also, the next day W5 aired this brilliant story (after featuring our protest on the National news, that’s right, bbs!) We are making history. We will not stop until this treatment is available for us everywhere. Dr. Freedman can suck it. I could go on and on about his financial interests in Big Pharma and the “experimental” procedures he has trialed that the MS Society funded in which people DIED (”they were aware of the risks”) from all the toxic drugs he put in their systems. Yet THIS is “risky” and “experimental”? Angioplasty is done every day, moron. “Why would you fix something that may not have anything to do with the disease?” I don’t know, Dr. Asshole Freedman, why did they set my broken wrist in a cast, when that has nothing to do with MS? Maybe because when something is broken, you fix it. When veins are blocked, preventing proper blood flow from the brain, perhaps you UNblock them. That’s all.

The controversy surrounding this simple fact is truly astounding.

In other news, my new friend Wendy (featured in the above Global News clip) was just here. She made me a big kale salad! She is ridiculously awesome and planning to move overseas soon. She spent over a month in Ireland before going to Poland for her procedure, and it looks like she will be making Ireland her new home. That makes me sad, I just met her! She can’t leave now!

As for other aspects of my health, the terrible vertigo finally went away so I am back to just plain dizziness and double vision. Which is fun. And the bleeding? Well, I’m feeling some pain and pressure down there so I’m thinking I do have fibroids, after all. My doctor put me on birth control pills but that hasn’t stopped the bleeding. A surgical intervention (hysterectomy) may be the only way. I don’t recover from surgery well, though, so I will try to dissolve them another way. Any ideas?

I also went to the sleep clinic last month, I forgot to mention that. Perhaps because it was a complete waste of time? After spending that night hooked up to all those wires back in February, nothing came from that. I don’t have any sleep disorders/apnea/snoring whatever. I told them I already knew that, it was my addiction to prescription sleeping pills I want to end. First I visited with a student doctor, who gave me all the textbook advice I already know and obviously knows nothing about MS. “Why do you go to bed so early/spend up to 12 hours in bed?” Um… because I listen to my body and I can’t function without plenty of bed rest. I have MS, look it up, DOCTOR. “What would happen if you don’t take your pills?” I won’t fall asleep, at all. “What’s the worst that could happen, if you don’t sleep for a few days?”Um… how about I need to at least function to get myself out of bed to the toilet, and if I don’t get at least a few hours, I won’t be able to do that? I said I’d need to be in a rehab facility where they could give me bed baths and hook me up to a catheter while going through withdrawal. Like they COULD HAVE DONE at the care facility while I was there, but nooooooo. Both him and the real doctor basically said there is nothing wrong with being on sleeping pills for the rest of your life and if I don’t want to be, I’ll have to go through a few nights without sleep, and if I can’t do that, then stay on the pills forever, see ya later.

I think I’ve got a pretty good system worked out with the two pills a night. I head for my bed around 9:00 (depending on my strength), take one pill after I pee around 10:00, sleep for a couple hours, get up to pee, take the second pill, sleep for a couple hours, get up to pee, am groggy enough to fall back asleep for a couple hours, wake up to pee, then I may or may not fall back asleep but will stay in bed until my next pee around 7:00 am. Then depending on my home care arrival time I may lay down for up to 2 more hours. Then pee.

Welcome to a night in the life of the MS bladder.

Wendy says her bladder has improved since her CCSVI treatment and she is noticing little improvements in that area and all over since returning from Poland. I want that treatment NOWWWWWWW!

The above was written yesterday and already so much more has happened! CCSVI Calgary had a meeting last night and it was crazy. The room was overstuffed with people and everyone is working so hard. I met a woman who is a radiology technician at a hospital here, who has MS. She knows the local Interventional Radiologist I’m waiting to hear back from about getting into his trial. Apparently, he was looking at the veins of his MS patients when this first came out, and found that they all have blockages. So he went about applying for a proper trial, but since the MS Society is dragging their feet and don’t REALLY want to do this, he is just going to go ahead and start testing people. I called the clinic today and was told he is just waiting for the proper protocols and will begin testing the week after next. I am, she said, #17 on the list and they’ll be doing four people a week. So, I may not be leaving town for testing, after all! I should hear back next week with my appointment date. Then I’ll cancel all my travel plans.

Oh, and when I got home last night, there was a big fat cheque in my mailbox from an Angel, to go towards treatment, wherever I go for that. I screamed. It was like winning the lottery! Totally unexpected and takes about half that load off my mind. Seriously. Huge cheque.

Okay! On to other topics. I saw the amazing, incomparable Mr. Peter Katz on Saturday night. He was BRILLIANT. Easily the best show I have ever seen from him or maybe anyone, ever. The Ironwood was packed and there were times you could have heard a pin drop. Everyone was mesmerized. He was given three encores and several standing ovations. I cried three times. It was epic.

This entry has been sitting open on my computer for over a week! I can’t seem to get around to finishing it. My bleeding has gotten worse and the pain has been unbearable, 24 hours/day, for about a week. I went into Emergency on Friday and that was a waste of a night, they did nothing for me. I finally had an ultrasound yesterday and the results are back but my appointment isn’t until May 1 (my birthday). I can’t wait that long, I want my uterus ripped out of me NOW, this pain and bleeding is crazy!

CCSVI Calgary is keeping me busy and this pain is exhausting so when things get better for me and I’m in better spirits I will post about something besides this.

Oh, carpets steam cleaned on Tuesday, I can scratch that off my 101 list!

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!

Yesterday I went to see a Physiotherapist about EMS/TENS. He was fantastic. He spent an hour with me and my dad, gave us a few tips on EMS, although he admitted he’s not a specialist in MS and not sure of the EMS effects on it. He did a regular assessment on me and figures there is hope for improvement. He told me it’s a good thing I asked for regular Range of Motion exercises from home care, as my RofM is very good. I just need to work on my strength. He said to not bother with the TENS part because it’s for pain, and to focus on EMS. Also it would be best if I cold be doing some kind of exercise while it’s on me. I do remember Dr. Terry Wahls talking about how she contracted her muscles while the machine was going, so I will try that too. He gave us the name of a physiotherapist who specializes in neurological problems, and may know something about MS and EMS. She also comes to see YOU wherever you are. He also gave me a 3 page printout he found in their files about how effective EMS is for MS, which is an excellent paper to show the physiotherapist here. He told me to utilize the physio here, tell them what I want to do and not stop until they help me. “They have great physio there, they just don’t have the time and resources. You’re intimidating them because you have been going out on your own looking into helping yourself. Don’t let them be intimidated; tell them you want help with a program you can do on your own.” He also told me to go back to OPTIMUS (outpatient rehab program for MS patients at the MS Clinic) as they may be able to give me more info about EMS and MS (although I doubt it, the physiatrist there already told me they don’t use it. But after reading this paper I DON’T UNDERTAND WHY NOT!!

After all the time he spent with me, the full assessment, the information and guidance he passed on, he turned around and refunded our money. “I don’t specialize in MS and can’t really help you, so I’m refunding your money”. Gulp. What a great guy. If anyone wants the name of a fantastic physiotherapist in Calgary, contact me.

Last night Nick and I got into a round of funny comments on Facebook about “muffin” and it was kinda naughty. After laughing my head off for 5 minutes, the NA came in my room with the evening snack, and said “would you like a muffin?” I thought I might die.

Today, my roommate Mary left to move into assisted living. The staff had promised me they would bring me a quieter roommate. The nurse came in this morning and mentioned she had someone in mind, but would “talk to you about it tomorrow”. I thought… my God, does this mean I get the room to MYSELF tonight?!?! Yes, yes it does. “The hospitals want us to take their patients out of the emergency room as soon as possible, so…” it will only be for tonight. They are doing me a huge favour, so I better sleep good tonight! Normally when they move someone out, they move another body right in. So I’m lucky they are being so nice. Last night, actually, I slept quite good. I owe that to the soothing sound of Peter Katz’s voice. I put him on repeat on my iPod all night, and will do that again tonight. Thank you, Mr. Katz.

Who, by the way, sent me an email yesterday that he would play for me when he is here in April, “no matter where you are”. *smiles* I have been listening to the song he recorded with Glen Hansard nonstop, as well. “First of the Last to Know”, on his soon to be released next CD. I get all tingly as soon as Glen Hansard starts singing!

Today after lunch I went home again. I got quite a bit of work done, but I really need to get my accounting software on this netbook so I can work from here, too. I can’t sit at my desk for as long as I need to in order to get a lot more done! It’s frustrating. One big problem is I don’t actually own the software and my client can’t find the disc! I also spent a lot of time with kitties. Enough to make me cry again when I left them. It seems like I’m able to walk in there about as good as I could before I ended up needing to come here, and it would probably be better if I didn’t spend all day in wheelchair here. A big part of my mobility at home is my electronic lift chair, which helps me stand up, and the bare feet on carpet thing. I do think at the meeting tomorrow I will ask about how to get into a more accessible apartment with self-managed care. I need a LOT of care though, so maybe a group home… if I can find one that takes cats!!

Tomorrow is the Big Meeting to discuss my future. My parents will be there, as well as my home care nurse Gail and the social worker and transition person on staff here. Wish me luck that they know of places suitable for me!! I know Mary made the choice of her “top three” but didn’t get into one yet. First you have to go to the first available bed just to get into the system, then it’s easier to move you around once you’re in when one of your top choices becomes available. I’m unsure whether I should just go into assisted living now, or try it at home with self-managed care first, just to need to do this all over again in a couple years. *Sigh*.

I knew it would happen eventually. I finally found the NA who sucks at her job and annoys the hell outta me. The staff here is, overall, pretty amazing and so nice, patient, understanding. But for the past few days I have dealt with the exception. Yesterday she almost pulled my right arm out of its socket when helping me up from the toilet (she’s 62 and been doing this forever, she should know better). She wanted to give me a shower yesterday, and although I don’t want to refuse a shower in this place, my day IS Thursday, and having one yesterday would mean I’d go 8 days before my next one. Plus, my mom and Andrea were coming, and I had a hair appointment. So she whined the whole afternoon about how I’m ruining her day because she had time to give me a shower, but would be busy the next day. My scheduled day. Not my problem, lady. She also doesn’t know how to put on my AFO (she’s 62 and been doing this forever, she should know better). Today, my shower day, she whined that she would have to do it over my breakfast, because she “has no other time, I had time YESTERDAY, but you didn’t WANT one..” Oh, shut up. And she bitched and “oh, lordy”‘d the entire time because it was so much work. “oh, lordy, you’re so big. Oh, lordy, this is hard.” I had home care help me shower/dress daily forever, and NO ONE ever whined that it was so hard because of my size. I told the PT Asst. about that today and she was appalled. “She is supposed to use a transfer belt to help you up, she should know how to put on an AFO, and she should NEVER have made comments about your size. Yeah, Betsy is not one of my favourites.” She has fallen to the bottom of my list, too.

There was a new year’s party in the coliseum this afternoon from 1:30 to 3:00. We rang in the new year at 2:00 with blow horns and live music from a guy and a guitar. He wasn’t very good, but the people here seemed to love him. I’ve been spoiled by my friends, and Rob Szabo he ain’t. We didn’t get any champagne (no surprise) or even juice. I figured out later after not even water was available, that there are many different needs in this place and not everyone is allowed/able to drink and it’s too much for the staff and volunteers to know what’s what. Next time I will know better and bring my own. There was a girl sitting next to me with a big tray on her wheelchair, and a sign that read “please do not give any treats”. Of course I’m reminded of the “please don’t feed the animals” signs at the zoo. So sad.

I saw the old lady I spoke of the other day sitting right up front with her son, so I wheeled up to say hello, just as she left. Her son was still there though, so I knew she’d be back. I figured I’d just sit up there and wait. Then I saw, out of the corner of my eye, the old man who hit on me yesterday. I knew he was coming for me! He wheeled right up beside me, and asked me if I had a boyfriend. Why-oh-why didn’t I just say “yes”? Coach K. would have covered for me. But I said “no”, and uncomfortably tried to avoid the next question. “Can I hold your hand?” As he asked I could smell the linger of cigarettes in his mouth. He must have just been outside for one. Since my right hand was in my brace and my left hand was busy tapping my thigh to the music, I mumbled something along the lines of “no”. He told me he had lived here for a year and really wants a girlfriend, and “you sure look nice, what would be wrong with that?” Oh, shit. I told him I wasn’t looking for that, and by that time Judy (the old lady) had returned so I focused my attention on her and her son, Rob. The old man (I’ll call him Frank, because I’m pretty sure I will see him again. This is a fairly big place, but small. SO SMALL). Frank wheeled away heart broken. I hate rejecting people, but come ON. You’re probably 30 years older than me and reek of cigarettes. Is it horrible of me to say that if I knew for sure he was mentally challenged in some way I would have given him the thrill of holding my hand and let the crush continue, but he seems to have his wits about him so I didn’t want it to carry on? Because yes, Donna, it is SO MUCH BETTER to lead someone on with a developmental disability. Instead I talked to Judy and found out where Rob’s room is, and she promised he would talk to me once he got used to me and I promised I would visit him.

Oops, I just remembered that the permanent residents in Frank’s unit are aged 18-65. So he can’t be older than 65. But still, too old for me, and smelly.

I hate my hair.

Tonight at dinner I found out that Tom is 80 and Nick is 42. I honestly thought Nick was younger than me! So I think I am officially the youngest person in this unit. Go, me. Also, if Nick had been downstairs for the party, I would have made him pose as my boyfriend when Frank came around. But I think Nick is too cool to hang out in the coliseum with that gang. Every time I’ve been by his room the door is closed. Once I heard music blaring. I bet he’s a brooding loner, into heavy metal and technology. He’s a good looking fella, I bet he would have been a lady killer if he wasn’t confined to a wheelchair with severe cerebral palsy. I am determined to get to know him, however, and figure out what makes him tick. We are the closest in age in this place, I have made him laugh more than once, and there is potential for a good friendship there.

Well, I hope to be asleep at the stroke of midnight when the rest of you are ringing in the new decade. Have a good one, I’ll talk to you in Oh-Ten!