Can You Hear Me Now?

Damn Canada Post! I want my stuff from eBay. Who knows when I’ll see it? And I can’t even mail anything because the mailboxes are locked up and “out of service”. I hate strikes/work lockouts. Work it out, people!

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

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

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

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

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

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

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

Have you seen this yet??

Awesome. All support is appreciated.

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

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

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

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

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

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

I need to update a lot more to make up for all the missed entries and scratch that item off my 101 list. Can it happen? I’m starting to think not, stuff has changed so much. But we’ll see.

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

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

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

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

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

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

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

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

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

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

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

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

that was easy and painless! i loves the internets.

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

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

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

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

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

I know it’s been awhile, and people want updates on my health since CCSVI treatment in Costa Rica. There is honestly nothing to tell… I read my last entry, almost 3 months ago, and it’s still pretty much the same! I know for sure that the symptom of painful spasms when I scratch is gone most of the time, as it hasn’t shown up much over the past month (just occasionally). So that’s something… but it’s not the 5 years of my life back I was hoping for! I was sooooo hoping I would go back in time and get some functions back. I went for a follow up Doppler last month, and he says I have “better” flow in my left jugular, but it’s not perfect. I have membranes in my veins causing blockages and “positional” stenosis that can only be fixed with stents. So I have some things to think about, a possible big fundraiser to organize and a trip to Arizona to consider if I can get the money… I am very confident about this Interventional Radiologist I have been talking to there, who has been working with veins for over 20 years. I really want to see her. I don’t think it’s Costa Rica’s fault I’m in this position, they have a great team down there but can only do so much, we are all still learning. I think I need something more specialized. And then what, who knows? It is so much more than just stenosed jugulars for many of us. All we can do is keep trying and hoping the neuros here loosen their grip and let the vascular profession study WTF is going on with our blood flow, veins, valves… and let us be fixed!

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

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

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

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

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

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

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

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

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

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

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

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

Pepper

Pita

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

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

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

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

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

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

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

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

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

I will leave you with this:

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

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

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

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

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

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

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

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

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

Tomorrow is another day.

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

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

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

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

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

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

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

I AM MOVING!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The controversy surrounding this simple fact is truly astounding.

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

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

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

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

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

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

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

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

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

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

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

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

AHHHHH! So far behind.

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

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

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

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

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

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

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

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

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

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

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