Can You Hear Me Now?

(ETA: The You Tube videos didn’t embed while I was working on the entry, but they did when I published. Go figure).

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

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

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

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

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

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

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

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

I made a pre-procedure walking video:

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

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

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

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

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

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

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

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

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

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

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

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

So much going on lately! I need to organize some sort of fundraiser to help cover the costs of my Liberation treatment, but it will have to wait until after the procedure because there is just too many other things to deal with right now. Moving this month, making all the arrangements and actually going away for two weeks in July, and setting up Self-Managed Care. I finally got approved for it, so I need to set up a business… open a bank account, set up payroll and WCB accounts, write the job description, and start interviewing caregivers and hopefully find a few that can cover the times I need. It will be part time spread over 7 days/week, morning help and evening help. I have until August 15 to get it all set up.

Sigh.

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

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

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

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

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

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

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

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

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

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

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

You can tell I’m home because I’m lacking in the updates department again.

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

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

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

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

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

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

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

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

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

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

“All is well. everything that’s happening supports my highest good. Out of this situation only good will come. I am safe.”
~ Louise Hay

I need to say that affirmation many times/day. I’ve been putting off updating because I can’t talk or think about the meeting we had on Thursday without crying. I thought I’d have more time to keep my apartment and my cats until I figured out where I’m going to live/how much I can improve between now and then. Unfortunately, things don’t work that way. As soon as you’re put on a waiting list for assisted living or a group home, you start paying for it. I guess they want you ready to move in the DAY a spot becomes available, even if that ends up being a year from now. So if I have to start paying for that housing right away, I can’t also pay rent on my apartment. So this week I have to give notice to my building and I have until the end of February to pack up my stuff, get rid of a lot of it, put some in storage until I know where I’m going. And my cats? Here I go, crying again…
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I can’t take them into a group home. Which is probably the best place for me. And if I decide to go the assisted living route, I could eventually end up in a place that accepts pets, but I’ve been told you can only bring ONE animal. And if I was even able to chose one, I would be keeping her in my room only, because I’d only get a room, and that is a) not fair to the kitty, and b) not good for me to live in the same room as cat litter. Going back into my own place with self-managed care won’t work for me, for many reasons it would take too long to list here. So, I’m a bit of a mess these days, if you can even imagine. And I know my cat-loving readers can.

I wrote the above several days ago. I’ve been crying too hard when I think about it too much, so I’ve been avoiding this. I’m doing a bit better now, because I decided that even if I have to start paying the group home/assisted living rate March 1, I’m still going to keep my apartment for March. I can pay both for a month and my parents will help. That gives me a bit more time to IMPROVE and make arrangements. Plus I have some amazing friends helping me find foster parents for my kitties. The plan is that I will get them back, and this calmness has come over me recently in knowing that will happen. I’m sure of it. But I’m going home for a few hours on Saturday, and I’m pretty sure once I see the kitties I will be a crying mess again. I have to BE STRONG!! I know this is temporary. I will figure something out so that I can live in my own place again with my cats. It will work out! I’ll win the lottery, or something.

It might even be The Liberation Treatment, if they can speed up the research and treatment options!!! Please sign that petition if you haven’t already.

One of the reasons I feel it is going to be fine, aside from my faith in believing everything works out the way it should, is Cheryl Richardson. I follow her on Twitter, and she offered up some Twitter Coaching the other day. I wrote her and told her in a nutshell what is going on, and asked how to handle this? She sent two very thoughtful tweets back, saying she would cry too, ask my friends for help, and to sit back and ask “how can I make this perfect?” So not only was I thrilled to get a response from her, (not quite the same as writer for The Office telling me to DATE AROUND LIKE CRAZY! hehe) but later that evening I opened up Hay House Radio on my iPod Touch (did I mention Nick is letting me use his WiFi??) for the first time in over 6 weeks and said to myself “if Cheryl Richardson is on everything will work out”. And, out of the 60 some odd people who host shows on that station, it was Cheryl who was on the air. So, it will all work out. But that won’t stop me from crying sometimes. My poor friend Pam, she thought she was doing something nice last weekend when she went to give me these little calico kitty ornaments. We hadn’t talked about this, so I shocked her by bursting into tears. She skulked and slowly put them back into the bag they came from. Oops.

So, aside from that, what’s going on around here? My new roommate is dream. She’s 91, legally blind, deaf, dementia really bad (wow, the anxiety you must be under when you live like that, believing no one knows where you are, or knowing where you slept the night before, or where the bathroom is… “I think you better call the police”) but she SLEEPS LIKE A LOG! I love her.

Tom from the dining room hasn’t been at a meal for days and days. I think he’s really sick. Chuck went home today. Something is not right when a 94 year old deaf/blind man gets to go home while Nick and I are here! I learned a bit more about Nick’s condition today, which makes more sense. I didn’t think cerebral palsy was so aggressively progressive… turns out he did something to his neck, maybe 20 years ago (he doesn’t even know what) which started this pinching on his spinal cord which has slowly gotten worse. But it’s been moving fast, the last couple years. He is waiting for a surgery that should help him. But every week he seems to be getting worse and more paralyzed. It’s scary.

One thing that is not helping either of us is the Physio Asst. has been sick all this week so we haven’t been getting our time on the MOTOmed! Or my daily walks! Everyone is suffering without her. The main Physio lady can only do so much. She did take me for a walk yesterday, but that’s it. There were some student nurses here on Monday, so I got them to take me for a walk, too. But two little walks over the course of 9 days will not be enough. On a positive note, I got my chair pimped up so that I no longer have to wear a strap around my thighs to keep my foot on the rest and my right knee from falling out. So I can independently get myself to the toilet so I’m now wearing undergarments I can pull down! I still have trouble getting my right foot on the foot rest, though, and my shoe usually falls off, so I end up riding out to find a nurse to help put me all together again. Until I am 100% independant with that they will assume I need full time care. I’ll also see how I do with the bathroom when I get home on Saturday. OH, THE THINGS YOU TAKE FOR GRANTED. Don’t tell me you think about that issue on a daily basis!

Visitors. Let’s see… Shawna came by and brought me her portable DVD player and a bunch of movies! Pam was here and brought lunch that day. My brother’s girlfriend came by on Sunday morning to shower me again, but this time a certain staff member bitched about me taking up time when there are other scheduled showers (10 MINUTES! I take all of 10 minutes, if even that! WTF!) so that put an end to that. I have Shawna coming later on Sunday afternoon to help me, but after that, I just don’t know. That Sunday morning slot worked perfect for us. I’m SO MAD. I know which staff member it was, too, so I officially hate her. She doesn’t work on my side, so I only ever see her in the dining room. But she is friends with Nick so I can’t bitch about her to him!

Of course, my dad comes regularly and my mom comes into the city twice/week. I try to make my dad “take the day off” as much as possible, but he wants to make sure I get hooked up to my EMS Machine so he’s here a lot unless I assure him someone else has done it! Speaking of, I have an appointment for a visit from a physiotherapist who specializes in neurological conditions next week. Hopefully she will give me more EMS tips.

Today the physiotherapist here came into my room and said “a little birdy told me you have a blog”. Gulp. “Word travels fast…” Many nurses have walked in while I’m writing in here and I may have mentioned its existence to her assistant. Now I feel bad if I’ve ever vented anything negative about the physio here. I really like her, and I know she has a lot of knowledge and everything. It’s not her fault they don’t have the resources to work closely with everyone. I just vent here. But I still hope she doesn’t find it. Unless she has already, and is holding it against me. “Would I find anything interesting about me there?” Not YOU, as a person! As a physio department that lacks time and resources, perhaps.

I finally got my call from the Sleep Clinic, and tonight I need to sleep with this insane sleep monitor hooked up to me. I think it’s for detecting sleep apnea, which I know I don’t have, but they will probably find out I do anyway. I told them I want to get off my addiction to sleeping pills, but I have to spend the night all hooked up and taped to this $10,000 machine, anyway. I have an instructional DVD, but I still need assistance putting everything on and testing it and it’s after 9:00 and none of the nurses here have yet confirmed they know what it is. It has to be returned by 9:00 am tomorrow, so someone better be able to help me!

I received a parcel from my dear friend Emma today. She is going to school in Scotland at the moment. And what did she send me, from all the way across the pond? A package of assorted Green & Black’s chocolate, that’s what. LOVE.

What a busy day! It’s not even 6:30 (when I start this… hours before I’ll finish) and I’m in bed, tucked in with my computer. I’m still barely sleeping here so I get tired pretty early. Plus, it was a busy day. Maybe I will sleep tonight?

It was a busy day because I went home for the afternoon. My friend Shawna came by my apartment and helped me SHOWER!! In my OWN shower! It was lovely. I got to wash myself and all my nooks and crannies properly, and use some deep conditioner on my hair. Then I got to lay on my own bed to dry. It was magical. And the best part? I walked myself without my AFO. I swear, that EMS/TENS Machine is working. Last time I was at my apartment, I couldn’t walk out of my office after I was done working, so my dad had to wheel me out on my office chair (my wheelchair won’t fit through the doorway). This time, I walked myself out. Even after I had walked to and from the bathroom/bedroom area. I was shaky and it wasn’t easy, but this is a very good sign! I wish I could practice walking here more. Unfortunately, a key for me is that I need bare feet, and they make you wear slippers or shoes no matter what (floors here vs. carpet at home). And physio only walks me with my AFO once/day for 2 minutes. Weekends off.

I am going home again tomorrow, so I will get some more practice in. And catch up on some recorded TV shows and use my Chi machine! I didn’t have time today, because Shawna was there to help me shower and my dad was there, then my mom and Bob showed up, and then I had to work, and then they all had to get to my brother’s for the cabbage rolls his girlfriend was making, and I needed to get back here to change and rest. We picked up Vietnamese food for me as I would be arriving too late for supper (4:30!! We get seated for dinner at 4:30 and it’s all over by shortly after 5:00! GAH). Thank goodness for 7:00 snacks. I’m almost out of goodies in my room! That may be a cry for help.

Poor Pita. She’s hurting so much and is so confused. She’s pissed off, the poor baby. When I come in, as she has every time, she gets all excited and meows and jumps on me and all that. But then I have to get to work and kick her out of my office when she follows me in, so she gets all hissy and bitey on me. She hisses at everyone around because she thinks they are responsible for me being gone, since they bring me in/take me out. Then I sit in my lift chair for awhile and give her some more lovin’, but as soon as she sees my dad setting my wheelchair and coat up for me to leave, she hisses and bites me. She’s none too happy with this situation. Pepper gets lap time with me and doesn’t seem as upset, but who knows. She hides it well. Tomorrow I’m not going to work when I go home, so I will be able to focus on them the whole time (while I watch my shows). I’m looking forward to that.

Oh, also, it was much easier today than it was last week to get me in and out of the car. Not as easy as it has been in months past, but certainly easier than since I arrived here. I’m able to get my own right foot out of the car and stand up easier. This is much easier for my dad, too! I can’t wait to see where I’m at in a couple weeks. The BIG meeting to discuss my future living situation is on January 21. I hope I can just be planning to go home on my own with self-managed care. That would be cool! And I’ll get moved up on the self-managed care priority list, if I’m living here, waiting for it. Woot, woot!

So, what’s happening around the care centre… I’m worried about Tom. His cancer is spreading, and he’s been told it’s just a matter of time. No guess as to how long. I REALLY like that man, he’s so funny and friendly. He likes to bug me if I miss a meal in the dining room because I have company or someone brings food in. “That’s okay, I ATE YOUR BACON”. Or “we had cherry pie. Did you have cherry pie? No? Ohhhh, it was good. Nice big slices, too..” I love that man and I don’t want him to die! Amy is making sure everyone knows she knows everything. And as Tom says, “she IS always right!” At 93, having led a very healthy life up until she hurt her back recently and having raised 10 kids who are all successful, (”CHEMICAL Engineers! ELECTRICAL Engineers!”) she has earned her right to brag. It’s funny to hear her yell at the NAs and tell them how they should do their jobs and when they’re not feeding Nick properly. Apparently she was a caregiver at a place like this for 20 years. And she was a teacher. Not sure when she had time to do all that while working at the canning factory she retired from, and considering I have to direct her back to her pod (we’re in 3 separate “pods” in my unit) almost daily because she gets lost and wanders my way, I’m not so sure what to believe. But I’m not about to argue with her. Her roommate complains that she NEVER stops talking LOL

My roommate, on the other hand, does not stop snoring and coughing and needing to be changed 2-3 times throughout the night. Last night I had to keep calling the NA back in here because she kept leaving the door wide open (I need it closed TIGHT! It’s practically beside my head!) I talked to the team leader about my lack of sleep and deep desire for a private room, or at least a room where my bed is furthest from the door and I have room for a TV like Nick, but she told me it’s all the luck of the draw and which bed opens up. “We don’t choose here. Private rooms are for very sick people, (BULLSHIT! John and Rose have private rooms, and poles beside their beds, and they’re just recovering from falls/broken bones) and since this is a temporary transition place, you have to suck it up, princess need to just be grateful you have a spot here and get used to not sleeping well. It’s not forever”. Yeah, but it COULD be months. And Nick told me his big, cozy, high tech corner came after lots of bitching and several room changes. So after my meeting on the 21st, if it’s decided I will be here for months while awaiting self-managed care or a group home or something, I will bitch. Squeaky wheel and all that.

Although, they got so fed up with one lady here, she was kicked out transferred somewhere worse because everyone was sick of her bitching. But she was an old crank, always angry and making a fuss about stupid stuff during meals. I just want to sleep. And shower.

Speaking of Nick, I wandered into his room the other night while he was watching a hockey game. He used his foot to turn the TV towards me so I could see it, too. Friendly gesture, no? Yet he still has never wandered by to talk to me, asked me a question about myself, and listens to his iPod full blast rather than talk to me while I await my turn after him on the MOTOmed. Why it bothers me that a closed-minded heavy duty Christian Conservative doesn’t appear to want to be my friend, is beyond me.

I like to arrive at physio for my MOTOmed session a little early, so I can possibly talk the PT Asst. into letting me stand at the parallel bars and stretch for a few minutes before she moves on to the next person. I’ve done it twice, so far. And yesterday, while waiting for Nick to finish, she took my right leg and did some Range of Motion stretches while I was sitting there. That was cool. She truly cares and would like to do more, but there just isn’t time. So many people on the unit that she needs to walk each morning and MOTOmed/other machines each afternoon. Hopefully the main PT here will become more interested in me soon, and increase my program a bit. In the mean time, I’m taking matters into my own hands with EMS/TENS.

The Occupational Therapist has been a great help to me because she wrapped my feet in compressor bandages to bring the swelling down, which has made a huge difference so far, AND she switched my bed mattress. I told her how hard this thing was and how sore my hips and knee get overnight. She noticed that my mattress was on upside down in the first place (”hard side up!”) which flipping over probably would have helped anyway, but she went one step further and found me a mattress in the storage room that has foam on it and is a bit softer. Praise Jesus! Last night I didn’t need to take any additional Ibuprofen for hip pain and my knee didn’t ache AT ALL. Woot, woot!

I have a new cell phone. It’s fancy (to me) and I have Bluetooth now. Ohhhhh I’m becoming one of THOSE people.

I had to update my blog if for no other reason than to tell you that I saw this woman, whom I’ve thought of often over the past 5+ years, tonight. We (dad and I) went to the laundry room to put my clothes in the dryer. There was an old lady in there, taking things out of the dryer and putting them on hangers. She was sitting on her walker, and looked like a resident here. My dad asked her what floor she lives on, and she said “oh, I don’t live here, my son does. I’m 90 years old and I’m doing his laundry!” I gasped and started babbling. “Has your son been here for over 35 years? Is he here because of a messed up brain surgery? I met you years ago in an Access taxi. I have repeated that story many times.” My dad helped her hang up the laundry and carried it back to her son’s room for her. This time I got her name, her son’s name, and what unit he lives in. I’ll have to go looking for him one day. Funny how I ended up living (for the time being, anyway) in the same place as her son. Funny or sad, depending on how you look at it.

I went home again for a few hours yesterday. I got the work finished I needed to before the end of the month, and of course cuddled kitties. Pita is none to happy, now that she seems to get what is going on. She was super excited to see me and both cats took turns hitting up my lap. But when it was time to go, Pita let out the whines and cries. She knows I don’t go out for “just a few hours” anymore. It’s like she was crying, “what are you doing? Where are you taking her? She just got here!” Sniff. I didn’t cry this time, though. I’m not even crying while writing about them here, this time. I’m toughening up.

Okay so several people have suggested that living here permanently (on the first floor where they have permanent long term care residents, many with MS) wouldn’t be such a bad idea. Let me make something clear: I NEED TO SHOWER MORE THAN ONCE A WEEK. That’s all they can manage here. Aside from the fact I can’t have my cats here, I NEED TO SHOWER MORE THAN ONCE A WEEK. Ideally, I’d like my own bathroom with a tub so I can set it up like at home, then all I need is someone to lift my leg over the side of the tub when I sit down, so I can shower myself. EVERY FREAKIN’ DAY. Tomorrow I have an appointment for a hair cut (and wash) and then on Thursday I get my SHOWER so at least I have some freshness to look forward to. I can’t wait!

I’ve been using my TENS/EMS machine the past few days. I still need a proper lesson on where to put the pads, but I can already tell it’s helping a little. Today at dinner I moved a finger on my right hand. Not much, but more than I’ve seen in awhile! I also lifted my own legs on to the bed tonight, which I’m not sure was because the bed was lower than usual, or EMS. I won’t get too excited until I can lift my foot to walk again, though! Today when I did my little walk with my AFO on, I noticed a big problem is I don’t (can’t) bend my right knee when I walk. My left leg goes normally and I “swing” my right leg around. That would explain my bad hips; my gait has been f*cked for years, slowly getting to this worst point. Hopefully when physio gets back into their regular routine after the holidays they will work with me on that! I used the MOTOmed for 10 minutes today, during which I told the PT Asst. that I miss the stretches home care gave me 4X/week, that my arm/hand hasn’t been stretched out since I got here. So the dear stretched out my arm and hand while I pedaled, and said she would do that every day now. Yay!

I met with the Recreational Therapist today. I told her I had seen the rec. calendar for all the Carewest facilities in the city, hanging up downstairs. Lots of outings and activities. She told me those were all for the permanent long term care residents, not for us. Boo! This unit is considered short term care, for rehab/recovery (like when I broke bones and stayed in this kind of place) and then to send you back to where you came from. Although, it has become longer term care for many, like me, who will be living here until there is an opening in a long term situation. So we deserve outings, too. The first floor even has Friday “happy hour” in the cafeteria where they serve BOOZE really cheap. We are not welcome. However, it is open to first floor residents and their families and VISITING FRIENDS, so I shall make friends with someone down there. I also found out who books the entertainment in the coliseum, so I will be talking to her about getting the Polyjesters in here. They will be a big hit with the coherant crowd!

Well, I’m off to get my beauty sleep before my haircut tomorrow. My mom is also visiting. I told my dad he is NOT allowed to come tomorrow, he needs to take a day off!!

So, I’m going to be gone for awhile. Not sure where I will end up or when, but it’s time to leave this place. I’m unable to walk and I can’t use my wheelchair in here; I’m tired of struggling on my own to do every little thing and I’m totally isolated here. I’ve fallen into a pretty big depression because it’s all so overwhelming. Where will I go? Who will sort through all my crap and move my stuff out of here, and where will IT go? Do I file for bankruptcy to get rid of this credit card debt once and for all? And don’t even ask me about my cats. I can’t even think about that without crying for hours. Everyone who knows me knows what those cats mean to me and I HAVE to be able to take them with me. I would seriously rather die.

Today the first step is to check into the hospital (I’m going to the one closest to my place, for those who know me) but I’m not sure how long I will be there. My Home Care nurse said they would keep me there for observation/testing and to meet with Transition Services (who work with people moving into assisted living and care homes and stuff). It’s possible I could end up back at the care centre I lived at when I broke my wrist. A lot of people there were waiting to get into a nursing home or another place (some had been there a year waiting…) If had money I could just put my name on the place I want to move to, but since I don’t I have to go through Transition rules which are “you have to take the first available bed”.

If you believe in the power of prayer please pray for me that this all goes smoothly and, more than anything, that I get to keep my cats. Also pray that the reason I can’t walk is just a relapse that will go away, even though I don’t get relapses and this has been progressively happening for the past year until I hit this crisis point.

The fastest way to get the ball rolling for assisted living is to check yourself into a hospital because you can’t manage on your own anymore. It’s the only way they will listen and take you seriously. So, that’s what I’m doing. I’ll get back on here when I can… Facebook is the easiest place to keep in contact with my friends so I hope I can access it again soon to update all y’all.

Today was quite the productive day. I made it over to the mall (it’s beautiful outside today) and not only did I get to Walmart for cat food and oh-look-it’s-Easter-and-yummy-addictive-Robin’s-eggs-are-out, but I got to the bank and set up a new RRSP plan, AND I got passport photos done. They are FABULOUS! These are the pictures that will proudly be displayed on my “Most Wanted” poster.

Gangsta. So I am one step closer to accepting that dinner invitation to Rome. And for THAT I will wear make up. As a friend of mine said, when you’re on vacation and start to look like your passport photo, it’s time to go home!

By setting up another RRSP account I completed another thing on my 101 list. Yes, I do still look that over to find things I will be able to accomplish, but I also know there is no way in hell I’ll get even close to completing it. I will make a new, more realistic list, when this one expires. Maybe.

I also got myself some cream cheese and Triscuits, so I can go about enjoying the habanero jams I ordered from Crooked Acres. Robyn sent along some cat toys for Pita and Pepper that are stuffed with catnip, so I got to spend the evening laughing hysterically watching them play. Pita excited herself so much, she threw up. I swear I’m making a video of the kitties playing, and that will be in it. (The catnip toys, not the puking).

And the jam… ohhhh boy! Hot stuff. I think it may cure anything.

My brother is here right now and I am virtually ignoring him.

The next couple of days are busy for me, I actually have things to do, places to go! Tomorrow a client is taking me out for lunch to My Favourite Vietnamese Restaurant, and then my Home Care nurse is coming over for my annual Big Assessment. Then on Wednesday I’m having lunch with a friend from school, my friend Lisa; a different friend Lisa than I usually mention! (That Lisa, by the way, is planning her July wedding to Russ, my blog host!) Somewhere in there I need to get a whole lot of work done. Sigh. So much for the attempt at frequent blog updates.

Oh! The Bachelor finale starts in a few minutes. By the time you read this we will know if the rumour he proposes to Melissa and then dumps her for Molly during the “After the Final Rose” show is true. Gotta go!