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!

I am home. I am so very happy to be here. At this point my walking isn’t much better than before I left, and I still struggle to do every little thing, but now that I’ve spent some time on the other side I know I prefer this to that. Not that actual assisted living would be the same as that care facility, (there should be coherent people people around, for one thing) but it’s close enough for me to know I want to stay clear of that for a loooooong time! I pee’d for two days straight, deflating all that sodium from the food out of me. I had puffed up like a balloon, more than just my feet! I didn’t realize how bad it was until Thursday when I pee’d every 20 minutes. And the food would be like that everywhere. And the shower situation. And the giving up my kitties situation. And the lack of privacy situation. I’d much rather struggle here!

It’s nice to have peace and quiet again, and my kitties around, and my chi machine and my bed. I missed my lift chair so much. And fresh fruit, real food, my MacBook, my TV shows (I’ll be catching up for awhile and I even deleted a lot of them!) and so many other things I took for granted. I will be stuck at home a lot again, but I won’t complain about that anymore! I still hope to get stronger and more independent in that area anyway, but in the meantime I have Home Care sending me a lady to help me get out to the mall once/week. I’ll be able to get some shopping done and get a latte and stuff, and someone with me to help me get stuff down off shelves, help me off my scooter when we get back here, put everything away and help set me back up all comfy in my chair. No fear of falling. The increased home care services are helpful, as someone pops in during the evening, as well. I get a lady every morning for personal care, range of motion and lunch prep, and then again at night to help me get ready for bed, refill my water bottle, wash dinner dishes etc. It only takes about 10 minutes but it’s great to have that help.

I won’t even complain that they’ve been sending different people every day and retraining people constantly is draining and frustrating. Hopefully they will get it down to splitting the work between two or three people on a regular schedule so I know who’s coming and when!

It seems a new symptom has reared it’s very ugly head, called VERTIGO. It’s making me crazy! It started yesterday afternoon, when I sat up from using my chi machine. Now it happens every time I get up or down, and sometimes while I’m just sitting here. It’s going to make me sick! I’m getting nauseous. I’ve certainly been living with dizziness for years, but this is more than that! Wow. I certainly hope it’s temporary. I won’t be putting up with this for long… puke.

The above was written several days ago, but this vertigo has set in something awful, so I need to take another break until this clears up. I can’t focus on anything so even typing this is making me feel sick! I’m going to my chiropractor today for a neck adjustment and advice. My doctor is away, so I may need to head to the walk-in clinic tomorrow. I want to get a referral to a radiologist… one of the causes of vertigo is a blockage in the veins, causing interrupted blood flow and oxygen to the brain. So if I can use this vertigo as an excuse to be tested for CCSVI, that would be great! Alberta Health Services has made an announcement that they will not pay for people to be tested. But if I have blocked veins I have a right to know and be treated for it! Grrr.

- Did I mention that I did go down for a “happy hour” when they opened the bar in the cafeteria, and they wouldn’t let me have a drink? They called up to the nurse on this unit and she said “no”.
- I’m leaving at a good time. My roommate has started snoring and making noises at night. She’s also getting cranky. She refused her shower last week, and refused to get off the couch and go to bed. They finally wheeled her in here at 3:30 a.m. Also, yesterday afternoon when I came out of the bathroom she was lying in bed, and I heard her voice: “there was a chair in the corner! Someone took it! They better put it back or some HEADS ARE GONNA ROLL!”. Also? Talking watch. With cuckoo birds that go off 12 times at midnight. She can’t even hear it. I CAN.
- I gave my comforter to Nick. He’s been here since July with the same hospital blankets on his bed (heavy, but no warmth). I don’t have use for a single sized comforter at home, and it was only 20 bucks, so maybe he’ll like it. It’s way more comfortable, lightweight and warm than their blankets.
- Garth is going home today, too! The doctor told him there is nothing more they can do for him here, since he’s just waiting for his MRI in a couple weeks and can just as easily wait at home, hopped up on painkillers. Poor Nick, all the cool people are leaving him!
- Tom is wasting away. I visited him yesterday and will pop in today before I go. I caught a glimse of his legs when a nurse came in to do something, and he is just skin and bones. He lays in bed all day and his boney knees stick up through the sheet. It’s very sad. He’s hooked up to oxygen and the strength is gone from his voice.
- Dementia ladies (of which my roommate is one) are making me crazy. “I’m new here, I don’t know where a washroom is. Me either, I’m new here, too” (after a month). “I didn’t book a room here, I’m not sure where I’m staying! No one knows I’m here, we should call the police!” (afer a month, and many visits from family). “I think that might be my room, I slept there last night, but there is a man in there! My room doesn’t have a man.” “I think he’s a doctor or a male nurse. He’s very tall.” (It’s my dad). Mildred: “SANDRA! SANDRA!” Beth: “Sandra will be coming for lunch, Mildred.” “SANDRA! SANDRA!” “She’s coming at lunch.” “SANDRA! SANDRA!” “Mildred, she is COMING at LUNCH!” and it goes on like that, for hours, day after day.

I can’t wait to detox from fake sweeteners when I get home. I did an online grocery order of organic food for delivery on Friday, I placed an order for some supplements, (including Serrapeptase, I’m going back on that) and started up a StemEnhance autoship again. I hope I feel a difference in a few days of not eating over processed food, canned fruit and fake sugars. I’m so dizzy. I think it’s time to brew up some more colloidal silver, too, and drink at least a few ounces/day. It’s time to make a strict routine and stick to it, mind, body and spirit, because I’ve had my wake-up call of what happens when I don’t. Those days I went through thinking I’d be moving into assisted living and giving up my cats were ROUGH. I don’t want to go through that again, it’s time to get serious and get BETTER.

See you at home. Give me a few days to get settled and get re-used to my home care and clean up the clutter in my place and catch up with work!!

Anyway, I just need to be grateful I can walk enough to go home again and will be getting home care. I’m not going into an institution, I can keep my cats, I can start watching my TV shows again, and I can eat real food. This is a very good thing.

I had my meeting with the Bioness guy today. Unfortunately, it didn’t go very well. He did not get the response from my foot he (or I) was hoping for. He blamed part of it on the amount of swelling/puffiness in my feet and calves and part on the fact that he’s not a physiotherapist. I told him the swelling should go way down within a few days of my being home, and he said he’d be coming back to Calgary in about a month with one of their physiotherapists. So we’re going to try this again, next month! In the mean time, I may call the orthotic place that made my AFO and book an appointment to see if I qualify for a Walk-Aide.

I’m falling way behind on this again! I wrote the above on Wednesday, it is now Saturday night.

Notes from around the care centre:

- Tom is very, very sick. He appreciates when I come visit him, but it’s very depressing for me. Plus, I’m leaving on Tuesday.
- Another person I think may be sorry to see me go is Nick. We have become pretty good friends, and aside from staff here, I don’t think he has many. I ordered Pizza Hut for us last night (and paid for it with heartburn all night) and watched the opening ceremonies of the Olympics in his room. I sure hope he gets his surgery soon and I sure hope it helps him. At this point he has no choice but to go into a 24 hour nursing facility.
- Garth is a really good guy. I just wish I could get my chiropractor in here to see him (and me!) He is in so much pain, and all they do here is give him pain killers. My chiro would fix him right up and he’d be walking out of here, pretty quick.
- The dementia ladies outside my door are making me CRAZY!!!!!!! I wish I could record some conversations so I never forget this for as long as I live and keep striving to get better so I don’t ever come back. Although, when I’m 90 and staying in a place like this I do hope I think it’s a fancy hotel, too.
- My dad has met a kindred spirit here, another father of an adult child with MS who is ANGRY and wants to see the MS Clinic here shut down. They are having a “meeting” on Monday. The guy from Bioness told me a good joke the other day… “what is the difference between a neurologist and God? God knows he’s not a neurologist.” The MS Clinic and the neuros there are a waste of time. Their response to the recent buzz on CCSVI is a joke. They and the MS Society are Pharma’s bitch and I’m SO SICK OF IT.
- I get dizzier by the day, my poop smells horrible (when I even do it!), my entire system is fucked up, there are so many hidden fake sweeteners in the food here because half the people are diabetics, and I’ve never wanted an organic apple so bad in my entire life. I can’t wait to get home to my own food and back on regular SPUD! deliveries.

So I will still be here Wednesday, and the PT said she’d be interested in meeting with the guy, so I emailed him and told him it’s a go. I’m pretty excited. I also met with a rep from the orthotics place that made my AFO, so making an appointment to go there for a government funded Walk-Aide is my back up plan. But at least this guy is willing to come here and see me, so at least I’ll know if I even qualify for the product in the first place. The Bioness is a superior product, so my wish is that he decides I’m a good candidate to try it out on and get feedback from and gives me one for free!! Hee.

We lost Rick from our table yesterday. They took his name placard away and said “he won’t be coming back”. I guess he had a fall yesterday and is back in the hospital. Sigh. I went to visit Tom in his room earlier and met his wife. He is so weak, thin and sickly looking. I told him I was so worried about him because they replaced him at our table. He said “they’ve given up on me” and I said “no one has given up on you, so don’t you go giving up on yourself!” and his wife said, “did you hear that, Tom?” You can tell she’s scared. She made a comment about spending 58 years with him, and “looking forward to many more” as she kissed him lightly on the forehead. It was really sad. You can see that the Fight is gone from his eyes.

The new person at our table is another GIRL! Her name is Sandy but she’s not very talkative. She has a developmental disability and came from a group home where she fainted and fell. I am no longer the most talkative at our table, that role now goes to Garth. He is very talkative and loves to joke around. His room is across the pod from mine, so there is someone nearby to talk to. I met his granddaughters today, they are so cute.

Nick’s dad brought his camera in, so he is busy with that. Not a lot of exciting things to take pictures of here, you’d think, but a photographer’s eye will find things, and he is uploading his collection to Facebook. I’m not in there, thank God. I swear I would kill him lol I told him he should get a collection of the snoozing heads out by my pod’s TV.

Speaking of, Lawrence Welk is on out there, and everyone crowds around for that! ‘Cept us cool people.

This morning there was a meeting held by the MS Society and the MS Clinic about Dr. Zamboni’s research (and their own agenda, of course). I’ll say now that there were police with guns present, they kicked out the CTV News crew, they didn’t allow for a question/answer period (they only took questions in writing BEFORE their presentation, and chose which ones they would address), and will put “a portion” of the presentation on their website (I’m sure they will leave out the part where they tore into W5 and CTV for bringing this to our attention in the first place). Thank God for W5 and the internet, so we have been able to discuss and read more about it. Thank God for the doctors and vascular surgeons who are excited and looking into it, even if the neurologists and mostly pharmaceutical companies don’t want them to. They said it would be 5-7 years before any treatments would be available for MSers, should the research prove it is a viable action in the first place. I have every intention of being tested/treated before then! My dad spoke with a woman after the talk that had LOADS of info, she was really angry with the way things have been handled by the MS Society/Clinics so far. She told my dad to sit tight for a few months, Zamboni is touring the country and teaching his method to doctors, and there is a LOT of exciting news in the pipeline. She suggested I not go to Poland for treatment as they are using a method that Zamboni does not approve of and it’s not as safe. I see my neuro on Monday and although I don’t expect him to be very positive, I will ask to PLEASE put me on the list for any upcoming trials/studies. Apparently, as of January 23, CCSVI was considered an “official” disease, so I should be able to get tested/treated for it, no? We don’t have the proper equipment here to test for it, but it shouldn’t be long! I will be first in line.

I just spent the past two hours trying to upload a video to You Tube and now I give up. Kitty stuff will have to wait for another day!

That would be The Bioness Foot Drop System. I saw a short piece on the news about it the other night (and I never watch the news, or barely any TV here at all, so that was fate) and I thought, woah, that is perfect for me! So I went to their website, didn’t see a location in Calgary, so I emailed them and asked. I heard back from a guy in Montreal who said “oh, perfect timing, we are coming into Calgary NEXT WEEK, can we make an appointment to see you on Wednesday?” D’oh! I tell you, it’s fate. I told him about my current situation, and he wants to come to see me here on Wednesday afternoon with the physiotherapist. I didn’t get that email until 7:00 tonight though, so I haven’t been able to ask anyone if I can stay an extra day for this appointment. I think the physio here would really benefit from the visit too, so I hope they go for it.

Now, these units cost several thousand dollars, but I know from researching it that the government is buying 500 units (from a different manufacturer, though) and funding a Pilot Project for those who qualify. So if Bioness is trying to get in on a piece of that action and I qualify, then I should be able to get funded for it. If Bioness just wants me to buy it, I will say no thanks and go to one of the suppliers that the government is funding for the project (I got all that information today, too, from the place that made my AFO). I just need to qualify, which I will know on Wednesday, and agree to many follow up appointments over the next year. I can do that! If it means I will be walking again, a LOT more!! I will have to walk my very best on Wednesday, to prove to them I am a good candidate. You need to be able to walk at least 10 meters (33 feet). Hopefully that is while wearing an AFO.

Anyway, there are a few things I want to get arranged before I go home. Their only concern is that home care is in place, but really, they let another woman with MS stay here until her house was finished being renovated and more suitable for her, so they sure as hell better not kick me out until I have everything I want in place. Except a new apartment, I know I can’t live here while looking for that. Although… house renos/accessible apartment? Isn’t the waiting time similar? I think they played favourites with her. Hmmm…

I just received an email that made me cry. Ange, if you’re reading this, you made me cry! Love to you, and I will respond ASAP.

I tried to have a conversation/screaming match with my roommate tonight. It went kind of okay. I feel bad for her because she is so alone and sooooo bored. Her son comes once every few days, but she doesn’t have the ability to make friends (hard enough with this crowd, anyway!) or a computer or her own TV that she can turn up as loud as she wants. The past few days she has been putting herself to bed at 1:00, thinking (and probably hoping) that it was bed time, until the staff caught her (they don’t respond to those alarms very fast).

Rick was doing better today. I hear his wife is coming to stay here for her recovery as well, so I’m sure that cheered him up. Tom, on the other hand, has been replaced at our table by Garth. I panicked, “what happened to Tom?!” and was told he is too sick and will not be returning to the dining room for meals. Goddammit. Nothing against Garth, who is funny and talkative and interesting and only in his mid-50’s, but Goddammit. Nick reads my Facebook so he knows I’m going home next week, and was all “not fair! I’m going to die in this place!” Geez, I hope not.

Pita, hanging out.

This was one of my Meals on Wheels dinners. Ick. Even Pita just picked at it!

There are pros and cons to living in a place like this. The pros being (some of) the staff are nice and helpful, meals are looked after, I am not completely socially isolated, and the MOTOmed. The cons being I have no peace and quiet, I don’t have my comfy double bed (I’m sooooo sick of this single plastic mattress), limited showers, crazy voices and alarms non-stop, I don’t have my cats, Chi Machine, TV shows, coffee maker, independence… I could go on and on. The cons definitely outweigh the pros. And whether I went to a group home or assisted living, most of those cons would stay, and some of the pros would go. They don’t give you regular physio in those places either, because you’re just there to live, not get better.

So I have decided I would rather go back home. I just need more Home Care and I must find a better apartment for a wheelchair ASAP. Now that I know I can lift my right foot to walk in my apartment a bit again, that’s where I want to go. I don’t get to walk here except for a little walk once/day with the physio asst. I can get stronger at home by walking more. It’s not easy, but it has improved since using the EMS and the MOTOmed. My Chi Machine will help, too, since I won’t have a MOTOmed. I just need to make a plan and a routine and STICK TO IT so I continue to improve. The Plan will involve more home care, mornings and evenings, downsizing my STUFF and moving into a better apartment. The Routine will include daily range of motion/stretching with home care, EMS, whatever exercise I can do on my own including going back to the pool twice/week, meditation, supplements, Chi Machine, affirmations, visualization and more inner self work… EVERY DAY. Not sporadically, like I have been.

I know I didn’t have the best life being so isolated at home, but I still liked it better than here. I am meeting with the social worker again tomorrow and I will ask her about access to volunteers that can help me get out more. And with spring coming, it will be a lot easier and hopefully by the next winter I will be stronger., if I stick to my routine!!

Today I had another visit with a physiotherapist, one who specializes in neurological disorders, and has worked with many people who have MS, using an EMS machine. She also said I have good range of motion (must keep that up!) and gave me more EMS tips and electrode placement ideas. I think I will get her to come over when I get back home, too, to give me some ideas for exercises I can do on my table there, and using other areas in my apartment for support. I’m sure there is a lot I can do with what I’ve got, if someone has the creativity and knowledge. It’s so hard to pin down the Home Care physio, plus they are paid by the Health Region and can’t be open minded! This lady was interested in my Chi Machine so I’d like to show her that and get her input. She charges by the hour, of course, but I can pay for another visit. Since I’m going home, they won’t be taking away my credit cards. Or the debt.

Now might be a good time to get my musician friends to play a benefit concert for me. “Help get Donna home, into a new apartment, pay for renovations, get some physio, go to Poland for the Liberation Treatment…” something like that.

On Friday I will be making a home visit with the Occupational Therapist from here, so she can see how I’m set up there and what my challenges are. I’ve had the Home Care OT over many times, so I’m pretty sure I’m as set up as I can be, but another set of eyes doesn’t hurt. She just wants to see how I get to the bathroom and get around the kitchen and stuff. She asked me, after I told her I spent the day at home on Saturday, if I “did any cooking?” HAHA as if I ever did that anyway. But I DO need to be able to heat up food/make coffee/get water etc. like I did before. I’m pretty sure it will be a struggle in the beginning, but it should get easier as I get back into the swing of things. I hope, I hope!

Things around the centre are rather uneventful. My roommate is still quiet, which is nice. Except she is now attached to an alarm, so if she tries to get up on her own, it goes off. She is none too happy about that. I heard her bitching to the NA earlier that she’s “not a baby, so stop treating me like one!” She is sooooo hard to communicate with because she is almost totally deaf and has that dementia thing, so we don’t lay here and talk. Her daughter-in-law says she’s bored to death and maybe it would be better if they kept the curtain between our beds open, but she can’t hear me from here even if I yell, so I don’t see the point.

Tomorrow morning I get my SHOWER!

Rick in the dining room was a mess today. I think he is just losing his will to fight, without his wife by his side. At breakfast he said she was here, so I suggested he get his breakfast sent to the conference room or something so he can eat with her, but I don’t think she was here. The Physio Asst. asked him as he left the dining room if he ate his breakfast, and he said “my wife did”. By lunch time he couldn’t even feed himself. He dropped his soup spoon on his lap and didn'’t react. He spilled his water on his pants and didn’t react. He tried saying a few things to me but no matter how closely I leaned in and asked him to repeat himself, I couldn’t make out a word. His food just sat there and sat there. I asked him if he needed help and he just looked at me blankly. The drool factor was insane, too. Finally an NA came over and fed him. It was pretty bad. I wasn’t there for supper (PT was here until after 5 so I went and ate downstairs with my dad) so I don’t know what he was like by then.

Oh, I just remembered (as I just took two) that I haven’t mentioned StemEnhance in awhile. That’s because I didn’t think it was doing anything for me. So I didn’t bother bringing any with me when I came here. But, over the past month or so my double vision has gotten much worse and the other day when I looked in the mirror I saw how much my wonky right eye had moved around and how terrible it looked! So I called my dad and said “PICK UP A BOTTLE OF STEMENHANCE FROM MY APARTMENT NEXT TIME!” because even if all it’s done is helped my eye and vision, that is enough reason to keep taking it!

I finally took the pictures off my camera so I have some relatively recent kitty pics to share until I get back home to take more!

BAH!

Coming, or going?

AH called me tonight. “What is it you like? A mocha?” Soy vanilla latte! He showed up moments later with Starbucks and had all the female staff in my pod a flutter. A young, tall, dark and handsome man in a nice suit doesn’t come this way very often. He couldn’t stay long (of course, always on the run) but it was so nice of him to drop by. With a latte, no less. I’ve had more lattes while staying here than I ever did at home! Tee hee. The other night I talked to him about the kitties, and told him he should take them. “My wife is HIGHLY allergic”. I said, jokingly, “well, get rid of her” and he said, not so jokingly, “I’m working on it”. He then told me a little about what is going on at home right now, and it looks like there could be another separation happening there. No big surprise, but we’ll see how long this one lasts.

I don’t think having a latte at 6:30 pm was the smartest move ever.

That was written yesterday. It is now Saturday night and I recently got back from an 8 hour visit to my home! I got lots of work done! I cuddled kitties! I didn’t cry! I walked lots! The swelling in my feet went waaaay down! I used my Chi Machine! Of course the swelling will come back by tomorrow, but it was nice to see all I need to do is sit in my lift chair with my feet up and walk to and from the bathroom a few times to get it down. Oh, and I’m sure my Chi Machine helped. Man, I miss that thing.

I figured out that if I can move into an apartment with wider doorways/wheelchair access to my office and bathroom, I could definitely manage at home with a little more home care. Even just another hour at night. I’d even be able to work more, sitting in my comfy power chair. It would be so much better than assisted living. I’d keep my independence and my cats. I’m going to talk to them AGAIN about self-managed care. I don’t care about all the reasons they said it wouldn’t be good for me, I think I have many reasons why it would be good. And it’s cheaper for the Province to fund me for that, then it would be to live in assisted living or a group home.

Nick has come by my room the past couple of nights, just to yack. The staff over here give him a hard time when they see him in my room; the staff on his pod could care less if I’m visiting him. I think it’s because my room is very open and everyone can see in here, whereas he is tucked away in a corner where no one notices. Although Nick says the staff over here are busy bodies who need more to do lol

We were talking last night about living arrangements, and Nick said “you have to keep your independence”. He’s right. I talked about the Law of Attraction, and how the more help I started getting, and once my dad came back into my life and started doing everything without me asking him to, I lost the ability to do it. He said that is exactly what happened to him, that when he moved in with his dad and stopped doing a lot for himself because his dad did it (housework, shopping) he lost more and more until he ended up here. Very familiar story! Unfortunately, we can’t tell people to STOP helping us now, because we really have lost the ability to do this stuff ourselves. But the more we can do, and try to do, the better. I growled at my dad today when he went to lift my right leg out of the car before I even tried to do it myself, first. I have to teach him to stand back and watch me try, first, then help only if I can’t. Instead of always being 3 steps ahead of me and doing stuff for me before my head has even registered that I need to do it.

That’s why even though I grunt, groan and bitch every time I get myself to the bathroom here and need to one-handedly pull up these damn Pull-Up thingys AND my pants, and get myself back into my wheelchair and do my best to get my right foot up on the foot rest, I won’t stop doing it. I am the one that asked to get out of the diapers and into the pull-ups so I could try on my own! And yesterday I didn’t even need a nurse’s assistance to get my foot back into the right place. I’ve been 100% independent in the toilet so that’s pretty big news around these parts. I made sure they documented it!

Tom still hasn’t been in the dining room for meals, so I went to visit him today. He had been moved to a private room, and there were paramedics in with him. Yikes. I tried to go again later, but the paramedics were still there talking to him and said they were “taking him somewhere”. That’s not good. Chuck has been replaced at our dining table by Rick, who it turns out used to be one of Nick’s teachers. He has Parkinson’s disease and his wife (who also has MS!) is his primary caregiver, who has been hospitalized so Rick is here until she’s raring to go again. I just hope they don’t meet the same fate as Clive and his wife. Clive was the man who sat at my dining table in the care center in 2006, who also had Parkinson’s, who had been a teacher of mine, whose wife was his caregiver… but they had to be split up because of their different care needs. That’s a part of marriage you just don’t see coming. You’re supposed to take care of each other until you die, right?

Rick drools a lot. I told him on Monday he’d get the rounds of physio assessment, exercise options, see a doctor… he told me he gets his exercise by rescuing drool lol

I brought my memory card from my camera with a bunch of un-uploaded cat photos on it. I need to go through that tomorrow! If I have time between my mom coming to spend the day, and Shawna coming to give me a shower around 4:00. Shower! Whee!