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’m here to explain why i haven’t updated for months. also i’m still one handed on a macbook keyboard so the shift key to make caps is hard to reach so i’m still typing like this.

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 i am very sad and have withdrawn a lot.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

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

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

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

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

SONGS FOR DONNA

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

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

*disclaimer* i’m still not doing caps because i’m one handed on a macbook and “shift/letter” is not often doable on this keyboard!

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

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

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

i’m going here: Pacific Interventional

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

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

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

THANK YOU. AGAIN.

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

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

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

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

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

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

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

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

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

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

I 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

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

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

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

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

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

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

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

TWO WEEKS UNTIL I AM LIBERATED!

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

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

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

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

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

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

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

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

Tomorrow is another day.

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

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

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

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

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

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

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

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

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

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

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

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

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

THANK YOU!!