This has been… without question… the worst year of my life. Especially the past few months. I don’t even know where to begin!! HOLY SHIT.

When I last left you, I had just hired Chrissy, and Thalia lived upstairs and all was well in the caregiver area. Now, Thalia has moved (waaaah! She still comes, but it’s NOT the same as having someone upstairs) and Chrissy left in May to spend the summer in Thailand and then move to Ontario. She was a GREAT asset this past year, but she’s gone. So, I hired this chick named Sherri who seemed very cool and although red flags popped up all over the place, I chose to ignore them because she actually worked great with me, and I’m an idiot. So I should not have been surprised when during one of my several recent hospital visits she texted me that she was stuck in BC because of the rain, and would let me know when she was on her way. I know one highway was closed for one night, but it wasn’t the only way out, and when I got home, couldn’t reach her by any of the numbers I had for her and she chose not to show up for work or call until 4 days had passed, I sorta knew that was over. Thankfully Thalia was able to cover for her. But when she finally called and acted like nothing was wrong, I informed her she was being replaced and her final cheque was in the mail. *shiver*

She has yet to be replaced… I’m waiting on a lady nearby I’m 99.9% sure I want to hire, but she needs another week or so. And since my hospital visits resulted in my being on an indwelling foley catheter for a few weeks instead of doing the in/out thing, I called Nancy and asked her if she could fill in for a couple weeks. Luckily she is able to. So Nancy is back for the time being.

My bladder and everything to do with it has been a living hell for the longest time now. Last year I started the in/out catheter thing several times/day so my bladder could be properly emptied. But I still got frequent UTIs and have been on and off every antibiotic known to man (yes, I take D-Mannose and natural stuff… more now than ever). After several visits to a uro-gynocologist and tests and whatever I needed to do, I finally went for Botox on May 9. Now, what Botox in patients with MS related neurogenic bladders is supposed to do, is relax your bladder so you don’t get the urge to pee constantly and your bladder is able to hold more before you feel the urge to go. In me, however, NOTHING EVER WORKS LIKE IT’S SUPPOSED TO, so I ended up with an antibiotic resistant UTI, a constant urge to pee and completely unable to, calling Thalia at 2:00 in the fucking morning to cath me because I had to go SO BAD and couldn’t, hospital visits, and finally now an indwelling catheter. At least the botox has relaxed my bladder enough that I can wear the catheter without getting painful spasms. I don’t know how long it will stay in… I actually want to keep it until the botox wears off and then get a permanent Supra-Pubic catheter put in (it goes right into your bladder via a surgery because a foley will be too painful then) because I GIVE UP. I HAVE HAD IT. My bladder has caused me too much pain, tears and exhaustion over the past couple of years. I’d rather be attached to a bag of pee. I don’t fucking care. It’s just too hard. Plus, with the catheter I’m able to drink more, and past supper, and try home remedies for UTIs I’ve read about, and my urine has never been so clear.

I could go on and on about my health. MS SUCKS. It’s a rotten battle you cannot win and fighting is so hard. I have gone from being able to walk up the hall and back to not even being able to do that in the past year. I stay in bed until home care comes in the morning (don’t even get me started on home care!!) and can get me out of bed and wheel me out here. I’ve gone from showering every day, to 3 times/week because it’s so hard, and I’m going through the paperwork process to get a lift installed in my bathroom to get me out of the shower. It is just too hard now… standing up is the HARDEST thing I do, and needing to do it after a shower without my leg brace on, when I’m cold and wet is near impossible. I’m sort of doing an up-pivot-into wheelchair thing from the shower bench with my home care worker’s help, but it’s getting harder and scarier every time. At bedtime I try to walk to my bed with my brace still on, but often I can’t do it and out comes the wheelchair.

I can’t get around my apartment AT ALL… I mean, it’s been a long time since I really could, but it wasn’t that long ago that I could still grab something from the fridge or cupboard if I HAD to. Like, if a chocolate craving hit and I knew I had Reese’s Peanut Butter cups on the freezer door. Now I can’t even do that… no secrets here.

I’m so fat. I can’t move, (although I still do Range of Motion with home care every morning and use my Chi Machine for 30 minutes every evening) so everything I eat sticks to me. And I’ve always had a weight problem. I don’t eat nearly as much crap as I used to, but I’m bigger than ever. God. I remember going through my 2010 receipts and seeing pizza, pizza, pizza, KFC, crap crap crap allll the time, when I was more independent and ordered in a lot. I can’t eat like that now… I mean, someone has to get the door and accept the delivery so I’d be ASHAMED and embarrassed to do that so often now (ever had food issues or an eating disorder? I know you get me). I’ve had the same chocolate bars in my freezer for months ’cause I’m afraid to ask for one. I can’t get them, and I know my caregivers would give them to me, because who the Fuck can say no to someone in my position, but goddammit. My life sucks so bad that eating crap is one of the few joys I have left. But being this fat when moving is so damn hard isn’t good, either. Having food issues and believing eating crap is a “joy” is only one of my problems, and I’ve had it longer than MS, but ohhhhh how it complicates things now.

I WANT A DO OVER.

I’m going to just upload this. I’m too tired to keep typing. Still one-handed, still no Frogpad’s being made for people like me. I still have my gorgeous kitties Pita and Pepper and will upload photos next time. My lovely friend Emma was in town last month and I got to see her, too. And Peter Katz. And my Polyboys. It’s not like there hasn’t been ANY good this past year. My brother even got married! But today was about just SOME of the bad and I need an outlet. So I need to get this blog up and running again. TTYL.

It’s Father’s Day so I won’t get this posted before everyone gets here, but I’ll get started anyway. It’s the whole family at Donna’s again where we’ll order in food and everyone can watch me get up and down to pee a million times in the commode beside my chair. I have NO MODESTY anymore. I’ve been saying that for awhile, but it’s never been more true this past year or so. Everyone has witnessed me pee. I wish I could be discreet about it, but I can’t. It’s just the way it is. And last Sunday night I fell in my bedroom around 12:30 am and since I sleep in the nude, (I always have and now I pretty much need to anyway) my rescuers (Thalia, who always sees me naked, and her husband…) saw me in my full glory. It was not easy getting me up, and although Thalia tried to keep a sheet wrapped around me for modesty’s sake, it was just in the way.

I am so thankful Thalia lives right upstairs and I wish she and her family would stay forever. I think I’ve got a year - they signed a lease - but then they’re outta here and most likely moving to Toronto. Wahhhh!!!

I am wearing a dress today that I ordered off eBay. It’s the first time I’ve worn it and it’s so low cut it shows the lace of my bra a little too well. Appropriate for Father’s Day, no? I have 3 dresses on the way… since I can’t wear pants around the house anymore I’m stocking up on comfy toss-on dresses for the summer. A little more classy than just a shirt! But this dress is a meant for a night out, methinks. Oh well. Damn postal strike.

I hired a new caregiver last week, named Chrissy. She’s fabulous! She works most mornings at a long term care facility and then 3 days a week she comes here for the afternoon (and 2 bedtimes/week). It’s going great so far. I had to replace Nancy because I need to be given an in/out catheter a couple times/day and she wasn’t comfortable with that assignment. So while I was at it I juggled the hours to give Thalia a few more (Nancy used to come 4 days/week).

Oh, the first of family arrived, I’ll be back later!

Obviously, I didn’t make it “back later”. Family was here the rest of the day and I’ve rarely been alone since, as my life revolves around caregivers. And my bladder, as I have mentioned previously (in passing).

I’m still waiting for that doctor in California to get back to me. He has copies of all before and after images/reports of my veins and on Monday he emailed me that he has everything he needs and would “try to call tomorrow”. Still waiting. Not that it will make any difference. He can’t fix my CCSVI from there and they won’t do it for free, and I’m still in debt from my last treatment, and whose to say I wouldn’t be worse again after another attempt?? Sigh.

Have you seen this yet??

Awesome. All support is appreciated.

What really bothers me, aside from the fact that I know I have CCSVI and can’t seem to get it treated properly, is that when you read about the symptoms of a stroke, or hypoxia (lack of oxygen to the brain), I have ALL those things every day, yet I can’t get help for it. Dr. Code says we are suffering from a slow stroke, and it makes perfect sense. It’s all related to blood flow and treated by correcting the blood flow. BUT IF YOU HAVE MULTIPLE SCLEROSIS THEY WON’T TOUCH YOU. This country, and the ones with “universal health care” that are run by pharmaceutical companies who make billions as long as MS stays an autoimmune disease (never proven), and with big ego’d neurologists who refuse to look at other theories because they also have strong financial ties to big pharma, are fucked. We are just fucked. It pisses me off like you would not believe.

I’ve had another week with Chrissy, and I tell ya, she’s just great. Next week we’ll be going out more and I’m planning on taking a road trip out to see my buddies in Carstairs at the Cafe Radio. I’ve only been in her car twice for outings, but it went well. And this week we went for a long walk (wheel) that I hope to do more often in the summer. It involved Starbucks.

Ohhhh we cleaned out my office this week, I got rid of a lot of old paperwork I’m tired of hanging onto. It’s old stuff from 2006 and 2007 from clients I haven’t heard from in years, and I figured, I am not going to be responsible for it anymore. Tax laws say you need to hang on to receipts for 7 years… but I don’t even know how to find these people anymore and they never requested this stuff back, so, I filed it under “G”. Scratch another thing off my 101 list.

I’m going to see the Titanic exhibition at our Science Centre on Sunday! It was Shawna’s idea, and I think it’s a good one. They have original pieces from the Titanic and stories and stuff. I think it’s going to be interesting. I didn’t realize they’ve been here since February and the exhibit ends on Tuesday! Glad I get to go.

Hehe I’m listening to a live feed from Cafe Radio in the background and my friend Kim just said “hi” to me. I almost feel like I’m there.

Well, I’m going to post this before another week goes by. Gotta pee!

We (Shawna and I) arrived in Los Angeles at 1:00 in LAX on Sunday, February 27, the same day as the Academy Awards. Because of this, I am 99.9% sure they re-routed the “normal” people to buses to be brought in to a different gate. Or something. It was not a normal plane departure and this is a daily flight, so on other days you know it’s different. In fact, we saw that same flight arrive when we were leaving, so it was obvious to us. Re-route the little people.

Anyway, we arrived, caught an Enterprise bus to take us to the car rental place, and I sat outside in the nice sunny weather while Shawna went to get the van. It took a loooong time. At one point a guy came along and said “here, let me wheel you inside, it’s COLD out here!” I had to laugh. I guess the week we were there was “cold” to Californians but to us, it was nice spring weather (usually around 18-21° C and sunny). But I let him take me inside so I could watch some red carpet action.

Finally Shawna and the van were ready, so we headed for the freeway and Costa Mesa, less than an hour away. We stopped for supper and then checked into our room at the Ayres hotel. It was great except for the TV. It was in a cupboard facing Shawna’s sofabed, and could not be turned so I could see it. Plus the cupboard doors didn’t even stay open. So I got to HEAR the Oscars that night. It was pretty neat to know all that was happening so close to us.

The next morning we had a quick breakfast in the restaurant (awesome free breakfast buffet every morning) before my consultation with Dr. Arata at Pacific Interventionalists. I met Mark, a Facebook friend from Edmonton who was being treated the next day as well. Dr. Arata was very nice and professional, knows his stuff, etc. What did we do after that?? I don’t even remember. Oh wait, we went to the MALL. Of course! South Coast Plaza. The largest mall in California. Pretty incredible place, with all the big names you can imagine. Then I dragged Shawna to a Whole Foods to make her cry over all the gluten free stuff you can get in the States that you can’t get here.

By the way, our dollar was really good while we were there, and eating out and everything was cheaper than I expected! Also, since everyone is on some kind of special diet in CA, getting gluten free food in restaurants was a breeze and wheelchair accessibility was never really an issue. I want to live there.

The next morning was my procedure. We got to the clinic and I won’t go into details (it took several nurses and many painful pokes before they finally sent someone who would LISTEN TO ME about where the good IV vein is, the procedure itself was bloody painful and at one point I screamed and started shaking/crying until they drugged me enough to put me out) and while I was in the OR, Shawna took herself to the beach and spent a few hours cruising around there. I’m not sure how long I was at the clinic, but after 2 hours in recovery they sent me home (I was awake and coherent, able to pee, so good to go). I spent the rest of the day/evening resting in bed and I do believe we had In ‘n Out Burger for supper that night

The next morning, Wednesday, was my follow up with Dr. Arata. I didn’t feel any different. (Mark, on the other hand, was an entirely new person, able to walk without his cane, no headaches, and except for some numbness in his toes, had no signs of MS anymore. Sigh). Because I had a stent put in my azygos vein I was prescribed blood thinners for two months, told to take Ibuprofen for the tenderness in my neck, and “give it time”. So… the medical part of the trip was over, now for some fun!

The day after treatment you’re supposed to lay low and not be too active (not hard for me these days, anyway) and stay “in the area” so we weren’t checking out of the Ayres until the following morning. But that didn’t mean we couldn’t spend the day in HOLLYWOOD! So, we did. We did the whole touristy Hollywood Blvd. thing, walk of fame, Mann’s Chinese Theatre, saw the Kodak Theatre where the Oscars had just been a few days before, etc. etc. Then we got suckered into a tour of the star’s homes, but because the tour buses aren’t accessible we got talked into a private limo tour. What the hell, how many times in life does one get to do this? So we went out for a couple hours in a limo with a private tour guide and saw everyone’s houses (from Johnny Depp, Ellen and Portia, Jen and Brad’s house before they split, to the Playboy mansion’s grounds and Aaron Spelling, Christina Aguilera and many more) and realized how close together everyone actually lives; Sunset Strip, Rodeo Drive, all that Hollywood stuff. It was fun and interesting, our guide knew her stuff, and a lot of history.

The next morning we checked out of the hotel and headed for Beverly Hills, 90210, where I booked us a few nights at the 5 star luxury hotel L’Ermitage (a favourite of celebrities like Leo DiCaprio, Shawna’s fave) which was, in hindsight, a mistake. The location was great, but the room was not set up for me AT ALL, and staying there was a struggle. Plus it is SO private (which is why celebs like it!) you wouldn’t be able to catch sight of a celeb if you wanted to (and we wanted to ) Only worth the money (and I got a great deal, but still, we could have stayed at a hotel in West Hollywood and been happier for less) if you’re able bodied, and spending a lot of time in the hotel.

Anyway, we got to the hotel, checked in, got a special key to the parkade because I’m in a wheelchair and couldn’t use their valet service at the curbed front entrance (saved on tips there, thank goodness), had a wonderful glass of complimentary lemonade (it was ridiculously delicious) then headed out to Burbank and Warner Bros. Studios for our tour.

We arrived at the parking lot for the tour, and I spotted a wheelchair sign and a ramp, so we parked close to that and headed towards it. There were a ton of people on this big outdoor patio and a band playing. We didn’t know where to go, so I asked some people where the studio tour was, and it was pointed out to us that we were at a private Warner Music party and the studio and tour was in a completely different place. Oops.

So we headed towards the big Bugs Bunny statue and the proper building to check in for the tour. After watching a short movie about the history of Warner Bros., everyone was loaded into the little tour bus (and me onto the back wheelchair thingy) and off we went. That was super fun and interesting! But because of the time, which I planned so carefully to be when Ellen was taping so we could maybe get a glimpse of her, or be a part of her pranks as she often does them on the lot, we were unable to go by her studio because she was taping. Harumph. We did see her office building and parking stall, but of course it was during a time our cameras were locked away. Due to copywrite concerns our cameras were taken at certain points. Like… we were able to SEE Clint Eastwood as he was directing his J. Edgar Hoover movie (missed Leo DiCaprio by 5 minutes) but no photos allowed. Or the museum where you can see the actual clothes worn by the stars of certain movies (Tom Cruise is super short; I mean, shorter and smaller than you can imagine. And Ellen Page must be the skinniest woman on planet earth). Or the set of “Chuck”. I did manage to get a few photos that day that have been uploaded to Facebook. The public album link, for now, is RIGHT HERE.

After the tour and gift shop purchases (Ellen T-shirt, Two and a Half Men coffee mug and Central Perk coffee-to-go container) we went to the Hard Rock Cafe in Universal Studios for supper. That is a pretty cool place!

By the next day, I was starting to fade. All the activity and not being able to sleep was catching up with me. I think all we did was visit Sprinkles Cupcakes in Beverly Hills for the MOST AMAZING CUPCAKES EVER, drive around a bit, and decide on which apparently celebrity hotspot restaurant we should go to for a fancy dinner. One big night out in Beverly Hills; you only live once! We ended up at Morten’s Steakhouse where there were a million Sherri Shepherd lookalikes and a private dining area in the back where the celebs probably go. Next time I will do more research and read more gossip rags before deciding where to eat! But I think there are celebs around you all the time in that town but you just can’t recognize them in street clothes, hanging out with the rest of you.

Thinking back, dining at the restaurant in our hotel probably would have been best. Leo DiCaprio goes there all the time and Daniel Day Lewis was in there when we were checking out. So… yeah.

The next day, our last day in Los Angeles, we headed for The Grove. What a fantastic place!! Of course it was a Saturday so it was super crowded. But what a great place to spend the day. They even have a giant farmer’s market there, where they celebrated mardi gras. It was a mass of people and crowds so that part was gross, but it’s a really nice place. I totally want to go back on a weekday.

So I think that’s really it… somewhere in there we visited a Target and Trader Joe’s. We went back to the hotel exhausted and worn down. Shawna packed; I rested. The next morning we checked out early, got some gossip from the girls at the front desk (”come on, we’re leaving now, we can’t go stalking anyone anyway…”), filled the van with gas before returning it, hung out at LAX until our flight left.

Once I got home I had high hopes that once I got back into my regular routine of more water and healthier food, proper rest etc., that I would start to feel better, but that never happened. I’m now over a month on my new eating plan, but I feel no different yet (and I don’t think I’ve lost weight, either! Hmph) but I’ll stick to it for awhile, I know it could take several months for my body to rebuild from proper nutrition. I’m waiting for a doctor down there to review my recent ultrasound results against my pre-procedure images and see what he has to say.

Pepper, my sweetie.

Pita crawled under the blanket I keep on the sofa to protect it from cat hair. Because she’s a smart ass.

after two CCSVI treatments and loads of debt, i’m sad to say i am worse off than before. not because i don’t have CCSVI - i sure as hell do - but my veins are so screwed up that when they tried to fix things they actually made things worse. and because they don’t allow the treatment in this country, i can’t see anyone for follow up and fixing unless i pay to go somewhere again. it’s very frustrating and breaks my heart. all that hope, belief, effort and MONEY just to end up WORSE. i am very sad and have withdrawn a lot. my jugular veins are in worse shape now (i think the azygos was fixed up though, and i have a stent there. it should all be well) and totally collapse when i lay down, so i have NO blood flow when i’m in bed (as opposed to the little bit i had before) so it’s no wonder i wake up each morning stiffer, more spastic, worse vision… my bladder doesn’t empty ever and i think i’ve had about 4 infections in as many months and my mobility has gone downhill fast. i don’t even go for my little hallway walks anymore, it’s too hard. it’s all rather depressing.

since my life these days revolves around caregivers (i’m rarely alone), my bladder and my bowels, there isn’t much to talk about on here. “today i spent the day going back and forth from my lift chair to the commode, and watched TV” is not a very interesting blog post. but that is my life. i can’t even wear pants because it’s become too hard to pull them up and down with one hand. especially when you’re doing it sometimes every 20 minutes.

i tried the indwelling catheter thing. i hoped it would give me a little more freedom, to wear full clothing, go out, spend the evening in my power chair (which i need help getting in and out of) and boot around my apartment. but two good 24 hour attempts at that didn’t work out, my body totally rejected it and made everything worse (plus it caused painful bladder spasms and a hell of a lot of discomfort), so that plan was dropped. also with bag emptying, changing, cleaning and tubing everywhere it didn’t actually give me the kind of freedom and ease of life i’d hoped for. My doctor is very happy (he didn’t want that in the first place, infections galore, but he doesn’t live my shitty life!) and wrote an order for in and out cathing, which is making a huge difference but will take awhile to get set up. Caregiver training/supplies and all. But the few times I’ve tried it has allowed me to sleep for several hours straight or go an evening without needing to get up every half hour. The ability to empty your bladder is not to be taken for granted.

so, that’s why i haven’t updated. the reason i decided to now, is because i was inspired by a couple of things - oprah’s last show (THIS is my talk show, this is how i contribute, share, be heard… it’s my stage) and the facebook profile by a fellow MSer who calls herself a writer, and updates her blog daily, and only has use of ONE FINGER so what is my excuse, i have an entire hand! aside from the fact i am rarely alone and able to write, i do have some time (especially on weekends) to talk about whatever is on my mind. when i pull myself out of my pity-party funk i expect i’ll have other things to talk about.

i will talk about my trip to california soon. it really was fun, so much better than costa rica. we had a great time and i hope to go again someday. i will actually go for treatment #3 at some point, probably there again, when the doctors know more and can actually fix my veins for real. and when #2 is paid off… $8,000 to go. i actually worked hard, with a couple of friends, to put together this fantastic music compilation you can download to help raise some money. please pass the link around, 23 artists donated over 90 minutes of music! I have the greatest friends on earth:

SONGS FOR DONNA

I’m sad that The Good Lovelies were not able to contribute. They have been on tour constantly and probably didn’t have time to clear a song with their publisher and record label and all that. but aside from missing them, we got a great batch of artists. even Jeremy Fisher wanted to be involved!

next up i’m going to post about my excellent trip to CA, rob szabo’s overnight visit, my new ipod touch, my new food plan (it’s been a month of no dairy, sugar, eggs, gluten; daily kale smoothies and lots of green drinks) and lots more. i guess i do have a bit more going on than just peeing but some days that’s all it feels like.

i have booked an appointment for Round 2 of angioplasty for CCSVI. i will say it now: i wish like hell i had waited and not spent all that freakin’ money to go to costa rica in july!! i really don’t believe they knew enough yet, and that entire experience has left a bad taste in my mouth. $18,000 later. i was definitely “undertreated” (as many of us “pioneers” were. no fault to the doctors, they just didn’t know better yet). not to mention they now have better accommodations and the transportation company is more organized and has more equipment. i did not have a good trip or experience there, to be honest. the hospital and care was fantastic, the people were lovely, but i had an awful trip and was mostly uncomfortable. when i just wanted to be grateful.

so, i’m going to try it again! this time i am going to a clinic in california where the doctors really know their stuff. i am very confident in this place, 100%. i know many people who have gone, too, and they’re all very happy. i am, once again, raising money to help fund this treatment and trip. can you believe we even have to leave the country and pay out of pocket for what would only cost our public health system about $1,500?? as opposed to the average $30,000/year, per MS patient?? it’s CRAZY.

Wendy said some good stuff during a recent meeting in Ontario:

i’m going here: Pacific Interventional

i have done my research, trust me! one thing i like about this place is that they are phlebologists (vein experts) and interventional radiologists and have been doing this stuff for YEARS. now they do about 20 ccsvi procedures/day, and the doctors are up on the latest of the latest techniques. i wish i could wait a year and go, when they know even MORE, but i can’t wait. i get worse every day i wait. (”time is brain”). i may need another treatment someday, but in the meantime i am confident further progression can be stopped by these doctors!!

my last ultrasound showed that my right jugular really needs to be ballooned (it wasn’t) and my left is “far from perfect”, although still better than it was. most of the subtle improvements i did feel are gone, some are still here, and my ms continues to progress as i’m able to walk less and less. i’m losing the feeling in my left foot/leg as well, which scares the shit out of me. so, i’m just doing what i feel i have to do to save my life.

If you can spare a few dollars, and I know most of if not all of you can, (skip your latte or brown bag it this week!), pleeeeease help me out. Fingers crossed by the time I need another angioplasty they’ll be doing it for MSers in Canada, but in the mean time… THIS IS HOW YOU CAN HELP. If you’re not a fan of online transactions you can EMAIL ME for my mailing address.

THANK YOU. AGAIN.

i’ll be doing other fundraising things in the near future that don’t just involve begging for money. watch this space!

Anyway, enough about all that. i haven’t even written since the new year! happy new year! seeing the polyjesters on new year’s eve was epic. they were fantastic, as always. sheldon, jason, and his wife karina opened a cafe in carstairs in january! that is now their full time jobs. i went for a visit opening week. it’s such a great little place, and they’ve got mom carol in there baking up a storm now! between her baking, the soups/sandwiches of the day, and the fantastic lattes, not to mention the best staff ever, it is THE place to be in carstairs. the cafe radio!

things are going well in the caregiver department. since hiring nancy and thalia, life is much better. i will cry if thalia moves!!! having her and her husband right upstairs is a godsend. her hubby has done so many little things around here that have made my life easier (he’s a woodworker) and they are SUCH a lovely couple. but they have a child and aren’t going to stay in this building long when you can rent an entire house for pretty much the same amount. and nancy is just wonderful… so positive all the time, she keeps me going. taking me out in her vehicle is awesome, too. how do you think i got to see the cafe in carstairs?! we also take regular trips to my chiropractor and my doctor. next week i’m going to get my hair done. so life is better, for sure, since i got the self-managed care going.

i’m lucky in that the way it works for me is that home care still sends me someone every morning for exercises, shower/dress, lunch etc. so i don’t have to worry about hiring someone to do that. i know nancy and thalia could handle it, but 7 days a week i MUST have that help, and it’s just easier that i not need to worry about it. the girls home care sends 6 days/week are great, but saturday is my day from HELL. i never know who is coming or what time, and i rarely see the same person twice, and they rarely understand english or have common sense. it’s a nightmare. i wish i could skip that day altogether and just sleep through it lol

today my home care told me she had trouble getting paid for one of her visits here because according to the office i had “cancelled that day”. wtf? luckily she was able to make them dig deeper by reminding them that i DON’T cancel unless i’m not even here. “she can’t shower, dress, or even get food without help, so why would she cancel?” really. shitty reminder of my situation, but whatever. maybe that will change soon… i’m trying not to get my hopes up too high after what happened last time, but it sure would be nice to not need so much care every day.

i am down to 3.0 mg of my sleeping pill/night! from 15 mg. sometimes 22.5 and i’d been known to take even 4 pills in one night (30 mg.) i am soooooo happy i am getting away from that drug!!!!!!!!!

i’ve got the grammy awards on in the background while typing this (i recorded it to watch whenever). justin bieber is on with jaden smith and they are cutting to will and jada. i can’t help but think how dj jazzy jeff’s children feel. (”gee, thanks dad”)

also, i like justin bieber. i’m not a fan of his music, but i really quite like him! he’s such a little gentleman and so bloody talented.

speaking of music, duran duran has a new album! and it’s fantastic!! and john taylor talked to me on facebook AND twitter. it only took 28 years for him to notice me, but it happened. that’s right. thank you, social networking.

so, i’m going to go now… let’s be honest, i probably won’t update until after i get back. unless i get into a big photo uploading mood, god knows i have a ton. but it will be an AWESOME update because i already know this trip is going to be so much better and way more fun than costa rica!!!

I’ve been a little sad lately since I found out some people I knew from that care facility I stayed at earlier in the year passed away. One being Tom, who I mentioned a fair bit. I really liked him. Turns out he died about a week after I left! Mildred, the chattiest of the dementia ladies, also passed on. And others, but I didn’t ask about everyone because it was too depressing. That got me thinking about Elaine, my favourite roommate from the other care facility I stayed at when I broke my wrist, and a quick Google search showed me she died about a year ago. Sigh.

I’ve been frequenting the care facility, visiting Nick. He went into the hospital back in May for the surgery that was supposed to help him, but it just made him WORSE. He was in the hospital up until about a month ago! Now he is living with the permanent long term care residents at the care facility. Once I was able to hire Nancy, we went to see him at the hospital back in October (with a Peter’s Drive In burger and shake, which he was very happy to get!) and a couple times since then. The first time I didn’t know he had moved back into the care facility, so we went to the drive in, which is very close to the care centre, then drove all the way to the hospital, parked, went up… and found out he had left!! So we drove allllll the way back to the care centre and he got a cold burger and melty shake. But at least I know where he is now, and he’s a lot closer, so visiting is easier. He is not, sad to say, in very good shape. His paralysis is getting worse by the day and he rarely even goes on Facebook now, it’s so hard. I definitely have to feed him his burger (or pizza, when we went a couple weeks ago. I’m his supplier) as he can’t lift his arms and has very limited use of a few fingers on one hand, that’s it. He says his lungs and breathing will be next to go, and he doesn’t want to be kept alive by machines, so…

I’m going this week and bringing him Puffs with lotion. He constantly needs someone to wipe his nose with tissue, and the kleenix in those places is rough. And when you’re at meals, it’s the rough napkins that are used. His poor nose is so red and sore. Do you realize how many times a day you lift your hand to scratch/pick/wipe your nose, eyes, ears, etc.? Can you imagine not being able to? I think I have scratched my head/face at least 5 times while typing this paragraph. It would suck beyond belief to NOT BE ABLE TO!

By the way, Nick doesn’t really have anyone. I think I may have mentioned when I was staying there before that the only visitor he ever had was his dad, and he did his laundry for him and stuff. So imagine my shock when his dad died in September. His mom lives somewhere in the US and judging by the stuff she posts on his Facebook, she is in denial about how bad things are with her son, otherwise she’d get her butt up here and be with him!! It makes me so mad to think about it. Last time I saw him he told me he’d had such a rough time with breathing and needing to spend the day in bed that he didn’t expect to wake up the next morning.

I forgot to mention a very important event that happened between my last two entries… my friend Jason got married in September! For realz!

I sure hope they don’t mind me stealing that picture off Facebook.

I’m so happy for them and they are so happy! I need to talk to Jason about an available date for the Polyjesters to perform at a fundraiser for me in the new year. I’ve got a lot of money to raise to go for another procedure! Family and some friends really helped with Costa Rica, so I need to do some real fundraising for this next, and hopefully final, one. I’m going to see them on NYE but I probably won’t get to talk to them about that… it will be mayhem!

I started working on this entry a couple weeks ago, and with some fudging I have managed to make it look like I started it today. Typing on the Macbook is a headache with only one hand. no more caps, i’m sorry, it’s just too hard and takes too long. i can go about pretty quickly if i don’t use caps. faster than the frogpad! but i still want a new one. caps are important to me, i’m usually very anal about typos! new frogpads should be available in march or april. in the meantime i’ve got my eye on ebay for a lefty frogpad!

christmas. it’s a lot of work, isn’t it? i don’t think it’s worth it, in our family! christmas eve i went up to thalia’s and spent the evening with her, her hubby and daughter. lots of cheese, fruit, crackers and yummy food like that. no need for making a big turkey dinner, just lay out the stinky cheese!! i made them watch the polyjesters “are we there yet” dvd from 2002 (i think?) but they didn’t actually sit down until it was past the halfway mark. now they have to watch it again, and pay attention hehe

christmas day my dad picked me up and we drove out to my mom and bob’s, where my brother and his girlfriend were as well. lots of food and presents! i got the 4 in one printer/fax/copier/scanner i wanted plus a new little digital camera (which my mom still has so she can exchange it for the RED ONE) and a bunch of little stuff. my mom worked so hard on the house, the big dinner… i hope it’s the last time she does it! she wanted to give darren’s girlfriend a proper christmas turkey dinner because they don’t do that in mexico, but it is too much work for 10 minutes of chowing down! next year i hope it’s much simpler. stinky cheese and crackers and BAKING.

oh, the absolute BEST PRESENT IN THE WORLD that i ever received ever in my life, was emailed to me last week. a song. a song written for me, about me, by ROB SZABO. coolest. thing. ever. i’m going to figure out a way to upload/stream it so y’all can hear it!! it’s a REALLY good song! the fact it’s about ME is just a bonus. for me.

Found one! Click here to listen: Donna’s Tune

that was easy and painless! i loves the internets.

okay, health update: i’m still weaning off sleeping pills, and it’s going pretty good! i’m down to 6mg/night, which is less than one pill, and less than i’ve taken in countless years. considering i used to take a minimum of 2 pills and often 3, i am happy with my progress. another 12 weeks i guess, to total freedom! i do forget what it’s like to sleep straight through the night, and hope i get to experience it again someday.

i saw another physiotherapist last week and was given a few more exercises to do here at home. i tried going back to “living well with a chronic condition” classes, but it’s just not a good fit for me anymore. i need to work at home, both by myself and with one-on-one help from my home care. living well is group exercises and i’m not able to do them anymore. plus 10 minutes, 2x/week (”if it’s available”) on the machine i want to use is just not worth the travel and trouble. i need to commit to doing these exercises he gave me regularly!

any movement is difficult, my stiffness and spasticity seems to get worse daily. it’s very painful. getting out of bed in the morning is the worst! baclofen (medication for it) doesn’t help much, plus since it’s a muscle relaxer it weakens your muscles over time, so i REALLY want to take something else. all meds seem to have the same side effects. i take magnesium and serrapeptase as well plus of course i stretch daily but nothing seems to do a damn thing! i wish i could take baths.

fun stuff update: after my last entry i went to see peter katz with thalia, and of course it was fantastic. the following week nancy took me to see the good lovelies, which was also fabulous! sold out show, packed house. then rob szabo sends me a song, and on friday i get to see the polyjesters. so, musically, it has been a great end of the year! my public photo album for peter and the good lovelies (while the link lasts) is over here.

i’m going to put some photos up here later, but for now i just want to publish this because OMG I UPDATED!

Tonight I am starting week 12 of 30 for tapering off sleeping pills (I decided I may as well go the 30 weeks and not rush it). Fingers crossed this works for me! Some nights I sleep better than others, but never as well as I’d like to. A few times I have caved and taken more than my tapering amount but I’m really trying not to! Last night was rough, but I would not let myself reach for another half a pill or anything. I’m down 6.0 mg/night from where I started, which is almost an entire pill (I used to take 2, sometimes 2.5 or even 3, some nights I was known to take 4). My prescription was 2 pills/night, so I’m doing really good now.

One thing I am really learning is if something is stressing me out and keeping my head spinning so I can’t stop thinking about it when I go to bed, I must DEAL WITH IT right away. I’ve resigned from being the Treasurer and webmaster/mailing list person for CCSVI Calgary. That was a full time job and it was making me crazy. Plus the President was driving me nuts and I don’t agree with how he does things, so I wanted my name removed from everything so I’m not associated with his screw ups!

Quitting that has been a huge relief and weight off my mind. So I have another job… being a boss! I’m finally on self-managed care. I was given a contract back in May for 30 hrs/week, but that was for all 7 days and was to include all personal care, exercises, meals, companion for outings, bedtime help, etc. etc. and I have been arguing with them about how that is not enough hours ever since. Well, to be honest, I didn’t think I’d need all that help after I got back from Costa Rica, so I really only started bitching about it in late July. I mean, one Handi Bus trip to the doctor and you’re looking at 5 hours easy, so I definitely needed more companion hours. After many phone calls, meetings, writing up my needs in detail, I finally got approved to keep my home care as is in the mornings 7 days/week (which is personal care, exercises, breakfast/lunch prep) and use the 30 hours/week contract to hire my own caregivers for supper/bedtime/companion care. That’s awesome! I’m so happy I don’t have to worry about hiring morning care, that’s the biggest job, and now I know someone will always be here, even on holidays. So I have hired a couple of fantastic ladies, one main one for outings and companion care, supper and occasional bedtimes, and another lady who lives right upstairs and can do suppers and bedtimes as well. She’s actually from New York City where she worked as a paramedic, and yes, she worked on 9/11. Well, she wasn’t scheduled to work, but of course she went to the hospital to see how she could help. Can you imagine… she lost a lot of friends that day.

They both started last month. They are GREAT, I totally lucked out with this! I’ve been able to do things like visit a friend in the hospital, go to my chiropractor regularly, shop at DIFFERENT malls and stores, and I’m starting exercise classes on the 30th. Next week I get to see Ghazi, the hairdresser I loved so much years back and haven’t been able to get to. I tracked him down (thanks, Facebook!) and made that appointment. A REAL CUT AND HIGHLIGHTS FROM A FANCY STYLIST! I can’t wait. It’s so nice to have a bit of a life again.

Although to be honest, this week sucks… Nancy, the lady I hired for afternoons, had to go down east suddenly for a week because her mother in law died (obviously these things can’t be planned). Gracie, my regular home care worker for mornings, had to leave suddenly to go back home to take care of her sister who has cancer (obviously, these things can’t be planned). It’s actually a good week for Nancy to be away because my home care has been scattered and LATE and it snowed so badly here everything/everyone is snowed in. I’m getting different home care every day again and it’s terrible (today was good, but she was a one time fill in). Who knows who’s coming tomorrow or what time or if she understands english/has common sense! This is why I’m so stressed and not sleeping this week! Gracie was also one of my back up caregivers for bedtimes, and my other back up is my friend Shawna who is in Hawaii, so with all those people away that leaves Thalia, the lady upstairs, to do suppers and bedtime until Nancy gets back. She can’t get sick!! Thank God she lives upstairs and can’t be deterred by weather and bad driving conditions.

Tonight we are going to see Peter Katz! Of course he brought a snow storm with him, as usual. Although he was here for a couple of days and we went for lunch (with Nancy and Thalia, her cute little girl and husband) on Nov. 2 and I didn’t even need a coat, so maybe it’s not 100% his fault.

I haven’t been updating my blog but I have been checking in on my 101 list and crossing things off. I think I’m doing well, and now that I have more help I’ll be able to get more accomplished

A couple more things I’ve been doing in the area of health and healing include Reiki and Body Talk. My friend Pam has her Advanced Reiki, and we decided to try regular sessions on me. This is pretty major, since she’s doing it for me as a friend, and the cost would normally be about $60 per session. I’ve had three so far, the weather ruined my chance yesterday as she was snowed in! I’m not noticing anything yet, as seems to be the way it is with me and energy medicine. I have something blocking me from allowing my body to heal, but it’s totally subconscious and hopefully with time we can break through it. Body Talk is possibly another way to get to the bottom of my health issues. I’ve had two sessions so far. My body talks a lot and tells her what’s wrong in certain areas and why, and it’s been accurate as far as I can tell, (in terms of where my pain is and weaknesses). My body also said it didn’t like the perfume in my deodorant (so I switched to unscented) and the filler the pharmacy uses in my sleeping pill capsules (they make them with the tapered amounts) so I got that changed, but who knows. None of the “tapping” techniques she uses to fix things has done a damn thing but constipate me terribly so I don’t think I’ll spend money on another session. We’ll see. I’ve added 2 Tbsp. of flax seed/day into my diet to deal with the constipation (it works!) and started taking Serrapeptase again at the urging of my friend Gail, who swears by the stuff. I’m hoping it will help with my unbearable stiffness everywhere, and pain in my hips and back.

Let’s see, what else… kitties are great, the vet saw them on Tuesday and they’re fine. Pita has made friends with Nancy and Thalia and although it took Pepper a few weeks to get used to their visits (she always hides from strangers, unless they are sent from the home care agency… she totally knows) she comes around now. It helps that they are good with the kitties! Thalia’s daughter is 19 months old and sooooo cute, and likes to come down and see Pita (and me, apparently she says my name a lot ). She has a stuffed cat that she has now named Pita.

My brother’s girlfriend painted me the most gorgeous sunflower painting ever! She is a fantastic artist. You can see her gallery here but I need to take a picture of my painting, which I would do right now while I’m thinking of it if my camera battery wasn’t across the room charging up for Peter’s show tonight.

Let me publish this before it ends up in my “drafts” for another month!!

Me and Peter when we went out for lunch on the 2nd

Pepper

Pita

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 two parts to this… the procedure part, and the Costa Rica part. I’ll write about the procedure first, and about the trip itself in another entry.

I was scheduled to undergo testing (blood tests, EKG, ultrasound) on Friday after I arrived, and receive the treatment on Saturday. Since all the updates I was reading on Facebook from others in Costa Rica said they were being delayed for a couple of days, I fully expected that, too. I went for my tests and all was well, they still told me I was scheduled for the following day. The ultrasound showed a reflux in my left jugular and some stenosis in my right. But those of us in the know are aware that these tests are often wrong, the only way to REALLY know is by venography, which I’d be getting at the time of treatment.

Anyway, we went back to the hotel, went for supper, and it wasn’t until we got back to the room after supper that I received the message that my procedure had been postponed until Monday. I figured as much! So was Kim’s, the lady who had been scheduled for the same day as me. We are actually very lucky, because there was a problem with a batch of balloons they received (wrong size) and they only treated one other person after us! Every one else that had been scheduled for the rest of July had to cancel their flights and plans and and rebook for August. Can you imagine! So I’m grateful I was only delayed two days and not 3 weeks.

Anyway, we arrived at the hospital on Monday and were greeted by the beautiful Gloriana, who works for the international department of Clinical Biblica and walks you through everything and translates when required. Her and Isabel, who works evenings, are fantastic. After getting me settled in my room (there was even a futon for Heather to sleep on, the rooms are huge) and seeing my doctor, it was somehow decided that I would go first, and Kim second. Good thing for me, because apparently hers took many hours! She had 5 blockages, I think.

I was brought into OR, transferred to a cold operating table, and hooked up to an IV. There were nurses buzzing around me speaking in Spanish, prepping me. I felt the anesthetic and sedative going in (it stings) and then the next thing I remember was waking up back in my hospital bed and wondering how I got there, and being wheeled back to my room. The difference between treatment in Costa Rica and every other hospital in the world that does this, is that they knock you out. I mean, apparently I was awake and chatting the whole time, and I said it hurt when they ballooned me, but I have NO memory of that. I like the way other clinics keep you awake and aware throughout the entire procedure so you can see the monitors and know everything that is going on. Some friends even said they could feel sensations coming back into their fingers or something at the exact moment they were ballooned. That would be cool.

Anyway, Dr. Fallas has his reasons for doing it his way and I’m not going to argue with a vascular surgeon. The first thing I noticed as whey wheeled me back was that both my feet were sticking up. You know how, when you lie in bed on your back, your feet stick up, and it’s like two little teepees? Well, for years my left foot has been the teepee and my right foot laid flat down like it was just dead. So here they were, both making dents in the blanket. So I knew something good had happened.

Back to my room for the night. I was sleepy from the sedative. Heather came in to spend the night with me after going out for the evening (she made friends with our cute driver, and he took her out and about a few times!)

The next morning I will say I thought my vision had improved, everything was brighter and clearer. This gives me hope that I WILL get that back… at the time it didn’t last long, by the time we got back to the hotel and the humidity it was back to it’s old self. I blamed that, and feeling crummy, on the humidity and discomfort I felt in Costa Rica, but I have been home for 2 weeks now so I can’t blame that anymore.

Dr. Fallas came to visit me that afternoon with his Macbook, to show me all the images from my venogram and ballooning. As I had suspected, there was stenosis in my left jugular and NOTHING wrong with my right one (he looked at every possible angle and was surprised by that, but I assured him all my problems are on my right side so I expected that the blood flow to my left side was normal). He said my jugular ballooned very easily and stayed open, so no stents were used. They only use them if the vein won’t stay open. I also had 40% stenosis in my azygos vein, which he also ballooned. I had told him pre-op to put a stent in and signed a waiver and everything, but he said it wasn’t bad enough to warrant a stent, that he wouldn’t even put one in an artery with 40% stenosis. The re-stenosis rate on the azygos has been 0% anyway, so I’m not worried. God intended for us to have 100% blood flow through our veins, so 40% less is a lot, even if it’s not “bad enough” to warrant a stent (my friend Tessa had 95% stenosis there!) He gave me a copy of the DVD so if I ever want to see my veins I can watch it.

I was back at the hotel by Tuesday evening, and physio started Wednesday morning. Claudio worked with me mainly, as Gaby is a tiny woman and although she is strong, I need a big man to work with me! Someone who could hold me up if I was going to fall… Gaby would be crushed by my weight! Not safe for either of us. My daily exercises were great, and torture, but great. I do wish I could have brought Claudio back with me!

A week later and two days before I left I had a follow up Doppler by Dr. Fallas. It only took him a few minutes to show me how my blood was flowing nicely through my jugulars! He gave me his card and told me to keep in touch, to keep him updated on how I’m doing in months to come. They are keeping good records and will publish their results, as other doctors around the world are doing, so soon we will have the documented results the MS Society and neurologists and nay sayers keep saying are needed, not just “anecdotal”. Because a billion before and after videos on You Tube will never be enough.

The differences I saw in CR were that sitting to standing was easier (I could usually get up on my first try instead of 2-3 and often needing help), I could take deep breaths, and my sense of smell improved. These improvements sort of came and went over the past few weeks, but now that I have been home for awhile and living in my new body I can say the following improvements seem to have settled in:

• Sitting to standing is easier
• Foot spasms have decreased
• My voice is stronger
• There is more colour in my face
• I can take deep breaths, oxygen is better
• My sense of smell is better - I can smell my own B.O. now
• I can scratch; it used to be every time I had an itch down my right leg or the right side of my groin or pretty much anywhere on my right side, I would break into these painful seizure like spasms with my right foot, leg, arm, hand… it was so annoying. Now I can comfortably scratch an itch without the spasms. I did scratch the right side of my back yesterday, and spasms broke out, so perhaps the blood flow hasn’t reached that part of my brain yet!
• Yesterday I had my first pedicure since the treatment, and for the first time in YEARS my right foot didn’t jump uncontrollably when she went to trim the nails and push back the cuticles. Normally she has to be very patient with that foot as it would jump in her face every time she tried to do anything. Yesterday she held each toe to do her thing, and we were both amazed that my foot behaved, didn’t jump or flicker, nothing! It was as calm and normal as my left foot!
• My balance does seem a bit better.

The above are all things to celebrate, and that is what I am trying to focus on. What makes it difficult, however, is that some pretty major things are worse: my bladder is crazier than before, my vision is worse, my walking is worse, I’m weaker, my feet are more numb, my energy is… I dunno… I think my vision makes everything seem worse because I don’t feel safe to move. The double vision is worse than before, although my dad swears when he looks at me, my eyes are lined up better. So I don’t know.

What I think is going on is that my body A) doesn’t like these blood thinners (I have about a week left I think) and B) needs time to adjust to the new blood flow and heal. I know I don’t like the blood thinners because I have bruises all over my legs (and my belly, but that is the pin cushion so it’s expected), I wake up every morning with insane dry mouth, and no matter how much water I drink (which is a lot) I can’t get clear urine, which is my goal. Then I read blood thinners make your urine dark and your mouth dry, which explains those things!

Friends have been telling me they have heard about people who, after the treatment, saw no improvements for months. Some were getting worse and thought they had re-stenosed, until weeks later they suddenly started getting better. So I strongly believe that is what’s going on with me. I went to my own doctor last week and got some blood tests, which all came back normal, so I really think once I’m off blood thinners and give my body time, I’ll feel a lot better. I’m also taking some parasite cleanse supplements from my chiropractor, because that can’t hurt. Parasites don’t show up in regular blood tests. I’m also seriously considering chelation therapy.

As for the colour in my face, let’s compare. These pictures were both taken by Heather with the same camera, no make up:

Obviously, the lighting at the airport before we took off (left) and the doctor’s office (right, 10 days later) are different, but I still think there is a big difference. Everybody who sees me now says something, so it must be true!

I live in hope that my worsening symptoms must improve, because proper blood flow can NOT be a bad thing. The only logical explanation is that my body is adjusting and trying to figure out what to do with this blood flow. And since my very first symptom back in 1987 was problems with my vision, I am expecting that may take awhile to correct. But it WILL.

To brighten up this entry a bit, I will leave you with this photo of the garden outside our hotel in Costa Rica, and to see my collection of pictures (I didn’t take as many as I would have liked, my camera wasn’t always with me) here is the link to my public album on Facebook. Remember that link will expire, so look now!

This will be my last update before I go to Costa Rica for my treatment! It’s angioplasty, by the way. We are no longer calling it liberation treatment (as much as I love that name) or CCSVI treatment because that just continues to allow the government and the medical community to call it “experimental” and “new”. It’s NOT new, it’s angioplasty of the veins. The same procedure is done every day for cancer patients and kidney dialysis patients and others. It’s only when you have MS that you are denied the treatment. And part of the problem is the new name it has been given for when it comes to MS. But it’s not a new procedure, so we need to stop calling it that.

I’m traveling to Central America and spending $20,000 to get angioplasty, a treatment available to anyone else for any other reason, in their own country. How fucking ridiculous is that?!

So, I moved last weekend. What a chore! My friends and family are amazing. They worked their arses off. We had Jackie, her husband Robin, their two kids, Jason (and he brought two teenagers to do some heavy lifting, Seb and Nick), Sheldon, Damien, Shawna, and later on Kim and Rob joined us at this end for picture hanging, fix-ups, last minute bring overs, etc. My mom supervised the furniture arrangements at this end. Shawna was in charge of the cats, which worked out well. First we locked them in my office at my old place until my bedroom was set up over here. Then they were brought over and locked in my bedroom until all the furniture was moved in. Then the door was opened and Pepper, traumatized, stayed in my closet, while Pita came out and snooped around and hissed at everyone. Business as usual.

I can’t believe they got pretty much everything done! I mean, pictures hung?! And thank God Kim was here for that, as she is an interior designer and has a great eye. My walls have never looked better.

It took Pita a couple days to calm down and get used to this place, but she seems fine now. Pepper hid in my closet for a few days, only making an appearance on my bed at night, then she slowly started hanging out in the main rooms. But only when it’s me, with or without my home care only. She hasn’t come out when other people are around. I feel bad because I’m going away, and she’s going to hide in my closet forever! She’s so sweet, I wish she wasn’t so skittish. I don’t know where that comes from. Pita’s personality I understand. She’s psycho, and it totalhy makes sense. But Pepper? I don’t know.

On moving day Jason was showing me how to film myself on my Macbook (for pre and post procedure videos) and it turned into an impromptu interview:

I can’t get videos to embed on here for some reason so here is the link: Pre-CCSVI “Interview”

I’d love to say I’m much happier here, in new and fresh surroundings. I do love the floors and counters and all that. But I HATE the fact that everything is backwards here. Everything is on the wrong side. Light switches. Doors. I can’t get to my fridge. My exercise table is turned around (it has to be) and it’s harder to get on and use my chi machine. Because the bathroom is bigger and set up differently, there is no counter beside the toilet to push myself up. A pole can’t go in there because it has a drop ceiling and the pole would go right through, so I had to get bars installed around the toilet. This is a pain because… well, I need room to position myself for wiping, and I no longer have that. My bedroom is smaller and it’s harder to get to my bed for some reason. I don’t know, it’s just all very upsetting right now. I’m hoping all this stuff won’t be an issue when I get back. I can’t use a walker and be able to get to my fridge. So… that has to change! I need to be able to get around my kitchen without a walker. Or get a new fridge. I know what I’d rather do!

I made a pre-procedure walking video:

And since I can’t embed, here is the link: Pre-Procedure Walking

Ah, Pepper has joined me for a bit. It’s nice to see her out here.

Then today I recorded myself in what was supposed to be me talking about my current symptoms and how my life works, but I ended up babbling mostly about my chi machine. There was a lot more I wanted to say about my mobility and needs, so maybe I will do another one. I just want my pre-procedure stuff on record. So there is this for now:

Aaaaaand since it won’t embed (all the coding is there, it just doesn’t show up for some reason) here is the link: Pre-Procedure Babbling

That was all written yesterday! Then my mom and Bob came over and we packed. I think I’m pretty much ready to go except for the last minute stuff. My dad picked me up the nicest hot pink suitcase with a matching carry on tote. I love it, and it sticks out! No man will try to steal it and it won’t get lost amongst all the black luggage.

Today I went to the bank to deposit more money and pick up some US cash. And test out my new credit card, I just activated the replacement and had to make sure it worked! I am now set for anything… lots of room on the credit card for the hotel, meals and related expenses charged to our room (like the driver for extra trips outside of what is covered) and cash in the bank for grocery shopping (we have a suite with a kitchen) and emergencies. And tipping. Now I just need to hear from Heather so I stop panicking. What if she died over the weekend?? WTF! She has to be fine and ready to come over Wednesday and leave with me at the ungodly hour of 4:00 am.

And spend the whole freakin’ day traveling and sitting in the Houston airport for 6 hours. Thursday is going to be the longest day of my life!

I have had many pre-Costa Rica visitors. Lisa, Russ and Lisa’s mom Maria even came over on Wednesday and brought supper (and a Costa Rica contribution!) Yummy chick pea curry, with leftovers for the following day.

Heather just called. All is well. I didn’t realize my voice mail is screwed up since I moved and I had no idea there were, like, 10 messages in there.

I fell. Went to the bathroom, and on my way out, I just toppled backwards and fell. No tripping, nothing to blame except my bad balance and the awkward position of the bathroom door. Sigh. So I fell backwards and landed on my ass on the bathroom floor (lucky I am cushioned there) and hit the back of my head. I managed to sit up long enough to grab my cell phone and call my dad. Then I called the rental office and told them what happened and asked if they could send Matthew over, as I knew it would take two. So they arrived around the same time and got me up. Now I’m sitting in my chair with a headache, but I have pee’d twice since then with no more falls so I think I’ll be okay. That was the LAST FALL OF MY LIFE, I promise. Looking forward to bed tonight!

Anyway, what was I saying… oh yeah, visitors. And phone calls. Lots of well wishers! I hope to see my other friend Lisa tomorrow.

My head hurts so I’m gonna go breathe with my eyes closed for awhile. See you on the other side, healthier and happier! YAYAYAYAY!

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!

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.

Sigh.

Of course, I can always hope that post-liberation I won’t need as much help. That would be BEYOND awesome, but I can’t count on that 100%. There are a lot of things I need to wrap my head around and seriously commit to. Fixing my veins is only part of it. It’s not going to cure me, but it will hopefully give me an opportunity to heal my body without the worry of further progression. With fatigue, brain fog and hopefully blurry vision lifted, I will have the energy and desire to work on myself again. Diet, exercise, meditation and a good range of supplements related to vascular health will be a necessity. A total necessity. If I am given the gift of feeling better and able to do more, I can not take that for granted. If my lifestyle and frame of mind stays the same, I will find myself right back here before too long. There is much work to be done and I’m counting on that 10 day recovery program in Costa Rica to give me a good start in a new direction. A new life. A NEW LIFE! I am sooooooooooooooooooooooooooo excited!!!

The fight for the right to CCSVI treatment in this country continues on a daily basis. One of the people in our court is the amazing Dr. Kirsty Duncan, Liberal MP for Etobicoke (Ontario) North. This lady is working so hard to help us! It’s fantastic having her on our side. The more politicians, the better, because they can actually make the changes from within. May 26 was National MS day, so I took the liberty of emailing every MP in the country about this. I sent Kirsty an individual email though, to thank her for all the work she is doing, and told her a little about myself and why this is so important to me. The following evening she emailed me back, stating she had tried to call me twice but couldn’t get through because I don’t accept calls from private numbers. So before bed I removed the Call Screen, and let her know by email that it was safe for her to call. That was at 9:45 pm, 11:45 pm in Toronto, so I was expecting I’d hear from her the following day. But, at 10:15 my phone rang! I saw the “private number” and thought… “no way!” and answered it.

We talked for probably half an hour. What a fabulous lady. I honestly felt like I made a new friend. She gave me her personal email address and asked me to contact her any time I need to talk. I cried a lot during our conversation; not so much that I couldn’t speak (the “ugly cry”) but enough that she knew how emotional this all is for me. She told me “you’re so strong! I can hear it in your voice! You’re a fighter!” We talked about my musician friends (possible benefit concert or two!) and my kitties. I told her about my time in the care facility and how afraid I was that I would have to give them up to go into assisted living. “But you didn’t!” She said. “See? You’re strong!” She is so passionate about helping us and is working around the clock. She must have given up everything else she was ever working on, to focus on this. I mean, calling a chick in Calgary at 12:15 am? Way to make me feel important!

Today in Parliament there was another meeting of the Subcommittee on Neurological Health, and there were many great speakers, including Kirsty. The one who made me BAWL was Steve Garvie, a secondary progressive MSer who got his life back after Liberation. He moved out of his assisted living apartment 3 months ago!! He talked about pride (how he had none, like me… everybody has had to wipe my ass and see me naked, there is no pride left here) and suicide, for the same reasons I think about it. You can hear everyone speaking on this audio. It’s long, but so worth it, after you get over the kafuffle about the slides needing to be in French as well as English. I started to cry when Dr. McDonald said “I’d like to point out that Rebecca Cooney is back with us today, (Rebecca spoke at Parliament a few weeks ago), and this time she walked in without a wheelchair, she had her venoplasty done in New York a little over a week ago, she is doing just great.” There was applause, and I broke down. Can you imagine?

I’m meeting with a caregiver tomorrow about coming to Costa Rica with me. I sure hope that works out! She sounded great on the phone, so fingers crossed. Also? I was looking at flights online and the return ones are fine, but all the ones going TO San Jose have, like, 12 hour layovers in Dallas! NO! I better be able to find something better. It should only be a 7ish hour flight + connection. There MUST be better connections than that! Also? Air travel in July is friggin’ expensive.

My awesome House Call Vet came over yesterday to trim the cats’ claws. I didn’t want to need to call a vet to come out here just for that, $$$, but whaddaya do. I haven’t been able to find a mobile pet groomer to do that, and it needed to be done. Especially before the move, to kinda save the poor person responsible for getting them in the cat carrier. Pita was easy to catch, she’s always in your face, but squirmed like crazy when he trimmed her. By the time he got to the back paws she was bitching, but no hissing, so he managed to finish. Pepper, on the other hand, was hard to catch. He earned his money chasing her around! At one point he got the step ladder out of the closet to get her from on top of the kitchen cupboards, but she escaped. He worked up a sweat. Finally he got her the second time she jumped on the cabinets, and whisked her into the bathroom. She didn’t squirm, she kind of froze up once he actually got a hold of her. Anyway, that’s done. It cost about the same as me getting a mani/pedi, so if I can spend it on myself, I can spend it on them. It’s life changing for us all when their claws are short, so it’s worth it! No more “OWWIE” when they knead on me. (They hate it though. So noted when Pita tried to jump up the back of my chair and claw her way to the top and she just fell off. Oops).

The above was written yesterday and I received a call from the caregiver I was going to meet with that SHE CAN’T GO! Major panic. I have to find someone TODAY. Damn damn damn who doesn’t want to go to Costa Rica for two weeks?? This is harder than I thought.

I just found video on You Tube of Steve Garvie’s speech from yesterday! You must listen. It is stunning and you will cry. I bawled because his “before” situation is pretty much the same as mine and if I could get that kind of “after” result… wow.

Yesterday we had a power failure all over NE Calgary. I was sitting here in my lift chair, writing this entry and thinking “need to get up to pee in a sec” and then POP everything went out. Including phones and internet. So I’m stuck in my chair (which I now can’t get out of because, well, it’s electric) needing to pee. I tried not to think about it, trusting the power would be right back. After about 15 minutes I did start to panic, and THIS is why I keep my cell phone on my walker tray and NEVER take it out with me, because I will forget it’s in my purse and leave it there and be unable to get it at times like this. So I called my dad from my cell and asked him if he could bring over a couple 9 volt batteries so I could get out of my chair (I forget sometimes that TWO 9 volt batteries only work for ONE lift out of this chair as back up power). He was half an hour away and I really needed to pee so I tried Shawna, who lives close. Her power was out, too, but luckily she had the car (the BF usually has it in the evenings for work) and was able to come right away, after a quick stop at the dollar store for batteries. About 10 minutes later the power magically re-appeared. Of course. So I got up to pee and Shawna arrived with batteries and we ordered in dinner (least I could do!) Then another 10 or so minutes later, my dad arrived with batteries. So there is a fresh set in the back up power bar and extras in the drawer. Hopefully this won’t happen again! I don’t know what I would do if our city had to suffer though a power outage for days, like many other cities have. What do the disabled people do, stuck in their chairs and lifts and power beds and no A/C or even a fan? I’d die!

Between working on this update I have been making a zillion phone calls and updating the CCSVI Calgary mailing list and website and sending out notices and blah blah blah. Busy day. My procedure date got changed to July 10 because it’s a Catholic country and they won’t do procedures on a Friday for a Sunday discharge. So I go on Saturday for a Monday discharge. Interesting.

I’m beat and my eyes and hand are done for the day, so CIAO.

Today I made a big decision and paid a $1,000 deposit towards Liberation Treatment in COSTA RICA. baby! It’s through a medical tourism company, and I had been on their list for awhile, originally for Poland. Then they changed their minds and put together a package for Costa Rica. At first I was weary of it, but after looking into the package and the doctor heading it up, I thought it sounded pretty amazing. I thought I was pretty far down on their list, however, and didn’t expect to hear. Then my friend Annette said she got booked for June 28, and I knew I wasn’t TOO far behind her. On Saturday I was scrolling through my missed calls and saw “Passport Medical” had called on Wednesday! I screamed! They didn’t leave a message, the buggers! I immediately called them and left a message, not expecting to hear back until Monday, but they called me right back! And offered me a date of July 9!

So I freaked out and thought about it and thought about it. I found out Shawna would not be able to go with me, because it is a 13 day program, and she doesn’t have enough vacation left. So that put a damper on things. Two weeks is a long time to expect someone to leave their job/family for. And then I thought this one might be a bit more expensive than the other places, but it really isn’t. If I went overseas, I’d need to fly first class because there is no way I can sit in an Economy seat for 20 hours. And hotels and car rental in the US would be more, and I’ve been quoted as low as $7,000 to as high as $80,000 so who really knows? And no one else has given me a date yet. And, Costa Rica? Come on! Paradise. And I like the 10 day recovery program they make you stay for:

• Evaluation before and after surgery
• Manual lymphatic drainage
• Kinesiology respiratory techniques
• Specific forms of electrotherapy
• Adapted exercise
• Mobilization techniques
• Relaxation techniques
• Multisensory assessment

No one else does that! It’s procedure, then back to your hotel and go home within a couple days (not that they aren’t giving excellent care, because they are, but still) so THIS sounds fantastic. And I deserve a nice, relaxing getaway, don’t you think? Yes.

So I took a deep breathe, paid the deposit, and quietly freaked out.

I. CAN’T. WAIT.

I still need to confirm a caregiver for the trip, however. I’m sure I will find one, I have a few options coming forward. I hope to confirm and book flights this week! EEEK!

Of course, this life saving opportunity comes at a price (please read this article to see the kind of bullshit we are dealing with) and if you can help at all, you know what to do. Good vibes are also widely accepted.

THANK YOU!!

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 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!

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.

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!

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

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

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

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

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

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

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

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

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

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