Can You Hear Me Now?

Okay, I know, I’m a bad blogger with my inconsistent updates! My treatment didn’t give me back the use of my right hand or improved vision or any of that stuff (yet) that would make this blogging process easier.

I have good days and bad days with my fatigue. I think overall it is better than it was. It seems like before a symptom improves it goes back and forth for awhile and then it stays gone. Like the being able to scratch an itch on my right side without going into major painful spasms. I thought it was a sure thing, then it came back, then went away, came back… now it has been about a week so I think I can safely say it’s gone and I can scratch! So maybe the fatigue will be gone for good soon. My brother’s girlfriend commented today that my eyes definitely look better, like they are in focus. That hasn’t reached my brain yet, but I hope it will! And my bladder… fingers crossed that will improve, too. Today is a pretty good day with that so perhaps it’s starting.

My body has been deprived of proper blood flow for soooooo long. I need to keep reminding myself that this will not happen overnight. But it’s hard when you see your friends jumping up and down 24 hours after their treatments even when they have had MS as long as you. Or handwriting again. Or using a fork. Sigh… we are all different blah blah blah I know.

I owe you an entry all about my trip to Costa Rica. I’m not sure I’ll actually get around to it, there’s too much to type about! Maybe I’ll do a bulleted version at some point. Right now I just want to do an update to show off my new award:

Which I think they just sent to every MS blog they could find, because they told me my “readers voted” but who actually reads this? LOL That’s why I took out their link. If I ever find out it’s the real deal and people voted I’ll give them credit. Until then, they are spam, but I’ll display the badge! Not sure how to put things on my side bar permanently with a Wordpress template.

I am taking a huge step forward with my health. I figured, I spent (well, my family and some dear friends) a fortune going to Costa Rica for a medical procedure that may have saved my life, so what’s the harm in spending more for some other help I really need. I am going off sleeping pills! I am going to end this 8+ year addiction once and for all and end this vicious cycle I have been on for years. You know… the pills don’t work anymore so I need more and I barely sleep anyway but I’m so addicted I can’t even fall asleep in the first place without them… it’s been rough. And the side effects of sleeping pills are surely making my MS symptoms worse than they would be (double vision! Blurry vision! Dizziness! Balance issues! Etc.!) So I was searching for answers and stumbled upon Point of Return and after thoroughly reading through their site I decided to go for it. The fact their lead physician has progressive MS and has managed to keep it in check with nutrition didn’t hurt, either. Before I even received my package I filled out a big questionnaire and then received a lovely personal response from the founder who gave me some great advice and hope. Reading her story in the book they send you made me cry! Although I am not on as many pills as she was (antidepressants, sleep meds, anti-anxiety, pain, you name it) I totally identified with her and the way she described how the pills take over your life and change your personality and the core of who you are. I just bawled and bawled and now believe there is hope for me, too. I am on day 9 of my pre-tapering nutritional build up and will begin tapering next weekend. My doctor wrote a prescription for the compound pharmacy to taper me 5% a week for 20 weeks. They called and told me that made for odd amounts so they would taper me 1/2 mg/week which I agreed to, but now I realize that is 30 weeks instead of 20 so I need to call them on Monday. I don’t want this to take longer than it has to (plus the products are expensive and you need to stay on them while tapering, it’s part of the program and I’m not doing this half way!)

One thing the founder asked me to do is try to cut back on the Ibuprofen I take because that interferes with sleep. I take an extra strength ibuprofen every night at bedtime, and often another one or two throughout the night, because of my hip pain and basic aches and pains my body gets from just not being able to move properly. Been doing that for years. My friend Beth, who used to be a nurse, was here (first time we had hung out in over 20 years, thanks Facebook!) and I asked “what am I supposed to take, if not ibuprofen? It’s the only thing that seems to help…” and she said “Willow Bark. It’s an anti-inflammatory”. And I was all… huh? You can buy willow bark at the health food store so the next day I found some, and have NOT TAKEN AN IBUPROFEN SINCE. It’s amazing! It really works! For headaches, menstrual pain, and all my hip and body pains. I only take 2 at bedtime and don’t need a repeat during the night. Amazing!

Another thing I’ve had to quit is my 5-HTP and calcium supplements. There’s a whole list of things I need to avoid while tapering off sleeping pills, including bananas! Oh, the doctor in Kuwait who is doing all the CCSVI research (Kuwait is one country that has approved the procedure for ALL MS patients to get right away) is swearing up and down that “I am 100% sure that overloaded Calcium is the main reason tor MS- CCSVI . And 72 other diseases”. He suggests stopping calcium and even Vit. D because it is a calcium retainer. “So keep taking Magnesium and B6 till all MS syndromes disappear.” Hm. Interesting. I know of a woman who, after tons of research and reading papers by a “world expert on the entire architecture of the motor neurons in the central nervous system” started taking calcium channel blockers and her MS is in remission. I Know two woman with MS who swear by large doses of B6. So there may be something to all this! No more calcium supplements for me and I better get me some vitamin B6.

In the meantime, I am taking my glutathione and Omega 3 to build up my system so it can handle the Big Sleeping Pill Taper of 2010™ .

I will leave you with this:

This man must be Calgary’s next Mayor.
Click photo for more info!

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 looks like I’ll be getting a whole BUNCH of the stuff on my 101 list done over the next month or so, because…

I AM MOVING!

If you can believe it, finally. After 7 years in this place with the 70’s mod yellow/gold floors and yellow counters and 20 year old carpets and 25+ year old gold stove and scratched up gross brown kitchen cupboards and every wall in DIRE need of a fresh coat of paint.

Where am I headed? Well, kitty corner, to the building across the parking lot. Just a few feet away, but a world of difference. The rental office called me and said “good news, a wheelchair apartment opened up! I’m giving you first dibs.” I went over to look at it that afternoon, and was sold immediately. Wider doorways, HUGE bathroom, nice flooring, nice counters, bright, white kitchen cupboards and all white appliances, newer carpets with an actual UNDERLAY (presently missing from mine. Oh, WHY did I waste money getting them shampooed recently? They are just going to rip this place apart when I’m out).

When they called and told me about the new apartment, I got excited also because I figured I’d get a new view. Right now my patio door windows show me the parking lot and Sears. So I get to this new apartment, open the patio blinds and see… parking and Sears LOL. Actually there is more grass because my new patio doesn’t exactly meet up with the parking lot like it does here, but you see it. And the side of the old pool house which is now the garbage area, so I guess you could say the view is no better. Time will tell if the sun beats in there like it does here… I have a feeling it will. But soon I shall be LIBERATED and maybe the heat won’t bother me as much? Yeah!

Speaking of, the MS Clinic called me recently to book an appointment to see the physiatrist there next month. I said “I don’t think I need to see him for any reason” and they were all, “oh?” and I said “I’m actually going the CCSVI route so I don’t think I’ll be back to the MS Clinic.” She was all “oh, okay, stutter stutter hang up”. I mean, in all honesty, the only help I have ever received from the MS Clinic was from the physio/occupational therapists at the OPTIMUS program. My neuro hasn’t done a damn thing for me when I really look at everything over the years. You always feel like you are doing the “right thing” by making annual visits to the MS Clinic and seeing doctors there, but when I break it down into anything useful… there is nothing. NOTHING. They run you around to see other specialists and prescribe drugs to try which obviously makes them feel useful, but all of this has lead to no improvement in my quality of life. I really don’t see why I would ever go back.

I have been in touch with Bulgaria, Poland, Germany, Scotland, Mexico, New York and Phoenix, AZ about treatment. I will be going SOMEWHERE, one day soon, to be Liberated. I really need to get my passport so I’m ready to go at a moment’s notice. I will be getting my own copy of my Doppler ultrasound and the Interventional Radiologist’s interpretation SOON, (it was due over a week ago, but the only doctor there that can actually interpret the results was called away on a family emergency so all is delayed) and will start shipping copies around! So even if my own doctor can’t help me, I will find one who will. Stupid Canada. We’re all leaving to get this done elsewhere because you won’t allow vascular doctors to do their job. We would pay for it out of our own pockets to have it done here, but NO. We can pay to have boob implants and take those risks, but a simple venous angioplasty (that is done on people without MS, on the same veins, every day) needs double blind studies while our MS gets worse. Sigh.

So, my bladder. I know you’ve been dying to hear. Turns out Mz. Drama Queen had a bladder infection and a few days of antibiotics cleared it up and things are back to normal. Which is not GREAT, but at least I don’t need a catheter. And the only reason I found out is because my Home Care Nurse insisted I get a urinalysis before getting the catheter, “just in case there is an infection” and I was all, “I DON’T GET BLADDER INFECTIONS! I DON’T HAVE AN INFECTION, I KNOWWWWWW IT!” and she was all “just get your doctor to fax a requisition and pee in the damn cup”. The next day my doctor’s office called and said “the test came back positive for an infection, where do you want us to call in the prescription?” and I was all… oops.

I am worried about my buddy Nick from the care centre. We keep in touch on Facebook. He has moved into the long term care on the first floor and I would like to go visit him one of these days, bring him some Peter’s Drive In. Anyway, he went in on, I think about May 6, for his neck surgery. His hope is that this surgery would enable him to move his limbs again and maybe even get out of that place! He announced he would be in the hospital 4-5 days and wouldn’t be online. Well, it has been more than 10 days and still no peep from him. I hope he’s okay! I guess I could call his unit. Not sure if they give out that sort of information on the phone, but maybe they can at least tell me if he is there or not.

I need new passport photos. I didn’t realize the ones I had were taken over a year ago! Crikey. I also didn’t realize that just a year ago I could get myself on and off my scooter and out to the mall. On my own. SHIT. I better get liberated soon, this is depressing me. I hope I get some of that back!

Well that was yesterday, and I got new passport photos this afternoon. They are even worse than those last ones, if that is humanly possible! Next step is to get the actual passport. Hopefully by early next week!

I also received the results of my doppler ultrasound, and I’m not happy. I haven’t heard from anyone who went to this clinic and got positive results, so I’m starting to think they don’t know what they are doing. Either that, or my problems are not in my jugulars and are in my azygos veins or something. But this ultrasound is a very specific test that needs to be done a certain way, which is why many technicians go to Italy to be trained by Dr. Zamboni. Which no one at this clinic did, so I fear they are handing out false negatives and putting that in their study, which is only going to make CCSVI look like a hoax. Which it totally isn’t. Out of probably 800 people that have had the venogram prior to treatment (the proper test) I think only 2 or 3 haven’t had any blockages. That would break my heart, but I am 100% sure I have blockages and can t wait to be tested properly and let this clinic know they were wrong.

I am waiting for a call back from an Interventional Radiologist in the U.S. and I’m going nuts! CALL ME! That’s the big difference between health care in the U.S. and Canada. I can’t actually call my doctor and talk to him… I mean, I can try, I can leave messages, but I end up talking to an office manager or an LPN. Only once in my life have I ever talked on the phone to a doctor that performed a surgery on me… and that was because I was hella pissed off at him and the treatment he gave me and I think he knew I was ready to report him to the College of Physicians and Surgeons so he was trying to be all nice. (Didn’t work). Anyway, in the States, you actually HIRE your own doctor by shopping around, where as here we get referrals by our GP and it’s pretty much wherever they can get you in. I called an Interventional Radiologist’s office in New York, talked to the lady that answered the phone about the CCSVI treatment, and she said the doctor would call me back in a day or two (their line up is pretty long now). The IR called me back. The actual doctor that would be performing the procedure! We talked for quite awhile, he was super nice, and he even emailed me within minutes of getting off the phone so I would have his email address and could contact him anytime. My doctor wouldn’t give me his email address if I paid him! (Of course, every doctor is different, I am sure some of my friends have more accessible doctors than I do. It’s just different here. We’re so short of family doctors, you’re lucky if you can find one that will take you on as a patient, never mind “shopping around”). Same with this other doctor I am waiting to hear from. The first time I called her clinic and explained to the receptionist what I wanted, they gave me the doctor’s direct line and when I called she actually answered, and we talked for quite awhile about the procedure and her interest in performing it. Plus she emailed me back later that day. I’m blown away! Accessible surgeons you can actually hire based on your own feelings about them!

I hope she calls me back tomorrow. I want to send her my ultrasound results and ask her if she is willing to test me further/treat me. I’ll be on the first plane. As soon as I get my passport!

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!

I’m falling behind on this thing again. I have a lot of time to update, but I’m still sosososo tired it’s difficult to function enough in order to do it. On a positive note (I hope), Mary is leaving on Wednesday. Now I just have to hope that my new roommate will be quiet and won’t need to be checked/changed several times/night, so I can SLEEP.

Nick and I have definitely become friends. I mean, he’s not an open kinda person so I may never find out everything I’d like to know about a friend, but he is definitely going to make my time here more bearable. Even though he probably loves Sarah Palin and has some pretty strong (opposing) views on things that are important to me, he doesn’t seem to push it on ANYONE so that’s cool. He lent me The Butterfly Effect DVD (I had never seen it! Man, that was freaky. I wasn’t sure I’d make it through, after that bit with his dog) and he has an awesome sense of humour. It turns out he has the exact same EMS/TENS machine as me! He had never even used it and doesn’t have anyone to help him with it, so I went into his room the other night to show him and get him set up. It was like the blind leading the blind! Between me only having use of one hand and him having limited use of his, not to mention it’s a small space and we’re both in big power wheelchairs, it was… difficult. We somehow managed to get both his arms/hands hooked up, but I’m not sure if it’s going to do much for him. No matter how high we turned it up, he couldn’t feel it in his arms. That’s not good. I don’t know anything about cerebral palsy and if EMS is safe, but I’m going to see a physiotherapist tomorrow and ask him.

That’s right, I’m staying in a place that has physio on staff, yet I’m going out to see another one. This one apparently has good knowledge of EMS/TENS and supports its use greatly, so that’s why I’m going. The physio here don’t have time to give me guidance if they even care about that, so I’m going to see someone who will. My dad will be with me and considering he hooks me up 90% of the time, it will be good for both of us.

My mom and Bob came by on Saturday, and I honestly can’t remember if anyone else did. Gah. On Sunday, however, my brother’s girlfriend came by early in the morning and gave me a SHOWER! It worked out great, because she dropped my brother off at work at 6:30 am (ugh) and then she came here and I was showered and ready to be dressed around the time the NAs would be coming by for my morning routine, anyway! She said she would come every Sunday to do that, so YAAAAAAY! Two showers/week and a hair wash from the salon another day, I can just squeak by with that. After I was dressed we went down to the cafeteria for coffee. I ate a tea biscuit but I also bought a muffin, because I thought I was so hungry, but that muffin is still in my drawer. Of course when I mentioned to Nick I have a muffin in my room, he repeated it back to me as a question. Which brought up the story that I’m on Twitter, and one of my friends once tweeted something about eating too much muffin, to which I replied “you can never eat too much muffin”, after which a bunch of lesbian groups started following me. He laughed, and laughed.

See, I could never have that conversation with anyone else here. Thank God there is someone here my age with a sense of humour. Tonight Chuck asked me at dinner if I ever ate a weiner. “I sure do like that,” he said. It’s a good thing he’s blind, because Nick and I were about to lose it. The other day over his breakfast sausages Chuck went on about his love for weiners. “They’re so easy, you don’t have to fiddle with them much”. Okay, STOP.

Back to Sunday. At lunch time, my friend Kim came by with her husband Rob, bringing with them not only a latte and some lunch, but a fancy cupcake from Babycakes!! So I can wipe that item off my 101 list. Kim and Rob were in town to host a sweet 16 birthday party for their daughter the night before. Lucky for me! I sure hope they can get into Calgary again soon, they’re awesome. I also forgot to give Kim her Christmas present, so she HAS to come back.

I have a cold. Lovely. All the lack of sleep has caught up with me, I’m so run down. Shoveling back Cold FX, and my dad came by today with the GOOD kleenex. And a cheap comforter for my bed, I finally decided I want to sleep with something besides their crappy blankets.

So I’m going to do that now, nighty night!

Today I’m attempting the “don’t speak for an entire day” from my 101 list. I figure I’d do that one early in case I don’t succeed… I will have every other Sunday to keep trying! I am Home Care free every second Sunday. I consider it my “day off”. I don’t have to get up for anyone or anything, I stay in jammies all day, I catch up on recorded TV shows from during the week that I didn’t get around to watching yet. Today I think I’ll rent “Bruno” because so many shows ran repeats because of US Thanksgiving. I watched “Funny People” last night. It was good, but not funny! If that’s what you’re expecting. Of course it has funny bits, but it’s about the lives of stand up comedians and that is rarely funny. If you’ve ever known any. The grumpiest, complainy, most depressing person I ever knew/sorta dated was a comedian.

I’m also doing my second “liquids only” day. No food, no talking. It’s like I’ve put myself in solitary confinement! Actually though, yesterday I went out for lunch with a friend and ate so much I was still stuffed when I went to bed. I also strayed from my Core Balance food plan by eating a whole wheat pancake with syrup, (wheat, sugar) so figured I’d follow that with a day of organic fruit juice to make up for it.

Speaking of food, or lack thereof, I did sign up for Meals on Wheels a few weeks ago. I lasted three days. It was hella disgusting! Wow. Their website says you can get “75-80% of your nutritional needs met” with their meals (lunch/dinner). I’d like to know what food group Jell-o falls into? I threw out more than I ate. All three dinners were gross… mashed potatoes from a box, soggy vegetables from a can, and some kind of processed chicken “meat”. Think of the worst food you’ve ever been served in a hospital and imagine it even worse. I can’t believe there are seniors and people out there that have no other choice but to eat this crap. I now buy some groceries for my mom and when she makes dinners, soups or chili she sets some aside in containers and freezes them for me. When she comes over on the weekend she brings food for my freezer and I’ll get her to make me a stack of sandwiches and hard boiled eggs for the week.

Ugh. Now I’m hungry for an almond butter sandwich on organic kamut bread. Heh. Mom’s in MEXICO right now, so I’m going to attempt to make my own hard boiled eggs today. I’m a little worried about the pot lifting, so I may wait until dad is here tomorrow. Hard boiled eggs is about the only way I will get protein in me for breakfast.

Hm. Well the above was written two weeks ago, I’m obviously not on the blog ball. I DID end up renting Bruno. I did NOT need to see that. Some parts were very funny and shocking in a *good* way (the parents? Willing to put their kids in any situation for fame?! The “gay therapist” guy?!) but most of it was shocking in a NOT so good way. A little too much there, Mr. Cohen.

I also didn’t stick with the “no talking”. I was doing so well and then I totally forgot about it when my phone rang at 8:30 and I answered it.

YAAAAAY I saw The Polyjesters on Friday night. They were performing for a Swing Dance Calgary event so everyone there was a swing dancer except me and Shawna. Talk about fun! They’re a young and energetic group of people who filled the dance floor like a scene out of the 1920’s. So naturally the PJ’s played all their old swing and jazzy covers rather than their usual set lists. Every show is different with them. And I LOVE to hear Jason scat, and sing like Louis Armstrong, and Sheldon is great at belting out Billie Holiday. I got to take my power chair out again and ride Handi-Bus with Shawna’s help. Thank God for Shawna. She helped me sooooooo much that night! It helps that she has been working in the field (around persons with disabilities) her entire career and is a Handi-Bus expert! We both need to call and complain about the driver we had for the ride home. What an ASS.

So, we have snow. And cold. It sucks to be here right now, lemme tell ya. Last weekend I didn’t get any Home Care because no one could GET to me, the roads were so bad and they didn’t even start plowing in my building’s parking lot until Monday. It’s really bad ths weekend, too, but my home care did make it eventually. Right now we are sitting at -27° C (-16.6° F). Brrr. We are getting a Chinook next week, thank you Mother Nature.

Last weekend I worked on my “10 happiest moments” list and I couldn’t narrow it down to just “moments” or just 10. I didn’t even have to think about it so I know if I actually thought about it, there would be so many more beyond the few years I hit on. Anywhere, here is the list I compiled, and where they happened during a time I had this blog I linked to it, so for a trip down memory lane and the days where I was mobile and able to travel and get myself out and about, click away. They are in no semblance of order.

1. Old Montreal with Rob, Lindy, Emma, Lobelia
2. Dinner with the Polyjesters backstage before a show, taking pics
3. The day AH asked me out
4. The day I arrived in Montreal and met Emma in person for the first time
5. The day I arrived in New Zealand and met Katrina in person!
6. Folk Alliance in Montreal
7. The day I bought my own condo
8. When the biggest crush of my teen years tweeted me back on Twitter
9. The day I got my kitties
10. Dinner with the Polyjesters, Kim and Rob in Medicine Hat… that whole night
11. The day Susan Jeffers called me
12. When Jim and Pam got married on The Office (kidding! Just seeing if you’re paying attention)
13. That trip to Toronto when everything worked out like a dream!
14. When Sheldon made that video for me on Facebook
15. I might as well just say any time I spend with Jason, Sheldon and The Polyjester family tops this list. Like the casino on my 40th birthday with The Trailer Park Boys and all that. Or their CD release party where they treated me like a Queen (again). I could do a Top 100 moments of my life starring The Polyjesters.
16. Personal concert in my living room from Peter Katz
17. When Rob was here the day after I finally arrived home from 2 months in hospitals after the Wrist Break/Gallbladder Gate ‘06
18. Rob Szabo and the gang taking me to South Country Music Fair for the weekend
19. When I was in charge of booking/promoting the improv comedy troupe at this bar, and I PACKED the place. With media, too.
20. Oh, flashback to 1990 when The Phantoms (band I worked for and saw a billion times in the late 80’s in Toronto) were in town and I had them over for dinner and made the best cheesecake on earth. Now I could go on and list 1,000 things about The Phantoms and my days in Toronto and seeing Duran Duran live in 1984 and ohhhhh shit, this I why I can’t think about it too much!

I guess the challenge IS to actually remember every single happy moment and narrow it down to a top 10. Maybe I’ll do that when I write my book! In the meantime, this has sufficiently depressed me which I don’t think it’s supposed to do. I guess I feel like the best times of my life are behind me and now I just have assisted living and memories of how much fun I used to have ahead of me. GAH I almost made it through an entire entry without feeling sorry for myself! Dammit. So close.

Pepper would like you to know she’s the one with the big black mark on her back left leg.

And Pita would like you to know she’s the one with the colour on her front right leg.

Okay, so, if you have MS or know someone close to you with MS, you have (maybe just recently, like me) heard about The Liberation Treatment and Dr. Zamboni. I heard about it for the first time on Friday when AH called me excitedly after hearing about it on the radio. Then there was that special on W5. I’m not going to go into great details about it here, you can click the links and see for yourself, but I AM going to urge you to call your closest MS Society chapter and neurologists and ask questions. Make a fuss. This is an amazing discovery which requires attention. Pharmaceutical companies and many organizations stand to lose a LOT of money over this, and it’s totally outside of the box of all other MS theories, so it’s going to take people like us to make noise. On Friday the MS Society wanted no part in this theory but after pressure from the phone calls on Monday after the news report aired, they changed their tune and have decided to grant funds for research. We must keep up the momentum!

I had a nice weekend. On Saturday my mom and Bob came by for their last visit before leaving on their vacation to Mexico tomorrow! My brother’s girlfriend also came by, and she helped me get to the mall so I could pick up a few things, including the shower curtain and handheld shower head for my neighbour. We weren’t able to get it over to her that day, but the rings were put in the curtain so it was ready for hanging. Cindy came by again the other day, and told me Home Care had come by to assess her and she was getting a bathtub bench, raised toilet seat, bars in the tub, pole beside her bed, a NEW wheelchair, and personal care assistance for showers and dressing. Awesome.

That night my dad picked me up and we went to my friend/client/Coach K’s 50th birthday bash. Lucky for me it was held at a restaurant and not his house so I could actually go! (His house has lots of stairs). I could only stay for a couple of hours (bedtime for me these days is between 9 and 10:00) but it was so good to see him and a few other friends of his I know. Coach K is, last I heard, 6′9″ (I’m pretty sure he was 6′6″ when I met him 10 years ago, but after 6′4″ everyone is shorter than you, so who’s gonna argue?) He just competed in and came in 5th at a national body building championship (so yeah, no one is going to argue with him about ANYTHING, except me, ’cause I’m his bookkeeper and make him pay his taxes no matter how much he whines). When he emailed me the photo of him posing on stage in a Speedo, I think I screamed, before I gave him shit. He’s like a brother to me… and no one wants to see their buffed, tanned brother in a Speedo.

On Sunday, my good friend and hero Rob Szabo came by with Ryan Hennessey, whom he is touring with right now. They had a show here that night but since getting out isn’t easy for me and bathrooms at these live music venues are rarely accessible (not to mention the bed time thing) I wasn’t able to go, so it was super appreciated that they made time for me. AND we went over to Cindy’s where they installed the stuff for her shower! I love me some Handymen. Slash musicians, the perfect blend. Cindy is not one to show emotion but I know she was grateful and thanked us. Good Karma Points earned by all. I had never met Ryan before, and he is a super great guy. Of course. Rob surrounds himself with pretty awesome people. He produced Ryan’s CD and gave me a copy… he also produced PETER KATZ’S UPCOMING CD THAT GLEN HANSARD SINGS ON . Not sure If I mentioned that before.

My 101 List is rolling along. I’ve been following the Core Balance diet (”food plan” - not a fan of the word DIET) for the past week, which among other things means no sugar (except in natural forms like fruits, grains). I’m doing good, although my craving for chocolate is starting to hit. Today is my first day of liquids only (one day a week over 6 weeks - not a Core Balance thing, just something I want to do). The other day I was walking up the hall and my pants fell off me, right down to my ankles. It was then I realized all the pants I wear I was wearing around the time of my 40th birthday a year and a half ago, and I have actually lost 50 pounds since then. It’s time to dig through my closet and find more pants. I would say it’s time to “buy new pants”, but I have certainly been this weight before in recent years (and lower… I gained a LOT of weight since breaking my wrist) so I’m pretty sure I’ve got better fitting pants around. But I sure do love my Silhouettes Yoga Pants so I think a trip to eBay is in order as well.

The pool is helping the weight loss too, I’m sure. Even though it’s only twice/week and I’m not doing much in there, I have worked up to 10 minutes and am even able to move my arm and leg a bit, to sorta jog in place or make scissor movements with my legs. It’s getting there! I’m still DEAD when I get out and can’t lift my right foot… and it takes a good 24 hours to recover… but I know it will get better. The staff have all said they can see a big difference from my first day, so that’s encouraging!

I need to clean off my memory card to get to all my cat pics. In the meantime though, I’m just glad to be updating! Pictures soon.