Can You Hear Me Now?

Yesterday I went to see a Physiotherapist about EMS/TENS. He was fantastic. He spent an hour with me and my dad, gave us a few tips on EMS, although he admitted he’s not a specialist in MS and not sure of the EMS effects on it. He did a regular assessment on me and figures there is hope for improvement. He told me it’s a good thing I asked for regular Range of Motion exercises from home care, as my RofM is very good. I just need to work on my strength. He said to not bother with the TENS part because it’s for pain, and to focus on EMS. Also it would be best if I cold be doing some kind of exercise while it’s on me. I do remember Dr. Terry Wahls talking about how she contracted her muscles while the machine was going, so I will try that too. He gave us the name of a physiotherapist who specializes in neurological problems, and may know something about MS and EMS. She also comes to see YOU wherever you are. He also gave me a 3 page printout he found in their files about how effective EMS is for MS, which is an excellent paper to show the physiotherapist here. He told me to utilize the physio here, tell them what I want to do and not stop until they help me. “They have great physio there, they just don’t have the time and resources. You’re intimidating them because you have been going out on your own looking into helping yourself. Don’t let them be intimidated; tell them you want help with a program you can do on your own.” He also told me to go back to OPTIMUS (outpatient rehab program for MS patients at the MS Clinic) as they may be able to give me more info about EMS and MS (although I doubt it, the physiatrist there already told me they don’t use it. But after reading this paper I DON’T UNDERTAND WHY NOT!!

After all the time he spent with me, the full assessment, the information and guidance he passed on, he turned around and refunded our money. “I don’t specialize in MS and can’t really help you, so I’m refunding your money”. Gulp. What a great guy. If anyone wants the name of a fantastic physiotherapist in Calgary, contact me.

Last night Nick and I got into a round of funny comments on Facebook about “muffin” and it was kinda naughty. After laughing my head off for 5 minutes, the NA came in my room with the evening snack, and said “would you like a muffin?” I thought I might die.

Today, my roommate Mary left to move into assisted living. The staff had promised me they would bring me a quieter roommate. The nurse came in this morning and mentioned she had someone in mind, but would “talk to you about it tomorrow”. I thought… my God, does this mean I get the room to MYSELF tonight?!?! Yes, yes it does. “The hospitals want us to take their patients out of the emergency room as soon as possible, so…” it will only be for tonight. They are doing me a huge favour, so I better sleep good tonight! Normally when they move someone out, they move another body right in. So I’m lucky they are being so nice. Last night, actually, I slept quite good. I owe that to the soothing sound of Peter Katz’s voice. I put him on repeat on my iPod all night, and will do that again tonight. Thank you, Mr. Katz.

Who, by the way, sent me an email yesterday that he would play for me when he is here in April, “no matter where you are”. *smiles* I have been listening to the song he recorded with Glen Hansard nonstop, as well. “First of the Last to Know”, on his soon to be released next CD. I get all tingly as soon as Glen Hansard starts singing!

Today after lunch I went home again. I got quite a bit of work done, but I really need to get my accounting software on this netbook so I can work from here, too. I can’t sit at my desk for as long as I need to in order to get a lot more done! It’s frustrating. One big problem is I don’t actually own the software and my client can’t find the disc! I also spent a lot of time with kitties. Enough to make me cry again when I left them. It seems like I’m able to walk in there about as good as I could before I ended up needing to come here, and it would probably be better if I didn’t spend all day in wheelchair here. A big part of my mobility at home is my electronic lift chair, which helps me stand up, and the bare feet on carpet thing. I do think at the meeting tomorrow I will ask about how to get into a more accessible apartment with self-managed care. I need a LOT of care though, so maybe a group home… if I can find one that takes cats!!

Tomorrow is the Big Meeting to discuss my future. My parents will be there, as well as my home care nurse Gail and the social worker and transition person on staff here. Wish me luck that they know of places suitable for me!! I know Mary made the choice of her “top three” but didn’t get into one yet. First you have to go to the first available bed just to get into the system, then it’s easier to move you around once you’re in when one of your top choices becomes available. I’m unsure whether I should just go into assisted living now, or try it at home with self-managed care first, just to need to do this all over again in a couple years. *Sigh*.

I knew it would happen eventually. I finally found the NA who sucks at her job and annoys the hell outta me. The staff here is, overall, pretty amazing and so nice, patient, understanding. But for the past few days I have dealt with the exception. Yesterday she almost pulled my right arm out of its socket when helping me up from the toilet (she’s 62 and been doing this forever, she should know better). She wanted to give me a shower yesterday, and although I don’t want to refuse a shower in this place, my day IS Thursday, and having one yesterday would mean I’d go 8 days before my next one. Plus, my mom and Andrea were coming, and I had a hair appointment. So she whined the whole afternoon about how I’m ruining her day because she had time to give me a shower, but would be busy the next day. My scheduled day. Not my problem, lady. She also doesn’t know how to put on my AFO (she’s 62 and been doing this forever, she should know better). Today, my shower day, she whined that she would have to do it over my breakfast, because she “has no other time, I had time YESTERDAY, but you didn’t WANT one..” Oh, shut up. And she bitched and “oh, lordy”‘d the entire time because it was so much work. “oh, lordy, you’re so big. Oh, lordy, this is hard.” I had home care help me shower/dress daily forever, and NO ONE ever whined that it was so hard because of my size. I told the PT Asst. about that today and she was appalled. “She is supposed to use a transfer belt to help you up, she should know how to put on an AFO, and she should NEVER have made comments about your size. Yeah, Betsy is not one of my favourites.” She has fallen to the bottom of my list, too.

There was a new year’s party in the coliseum this afternoon from 1:30 to 3:00. We rang in the new year at 2:00 with blow horns and live music from a guy and a guitar. He wasn’t very good, but the people here seemed to love him. I’ve been spoiled by my friends, and Rob Szabo he ain’t. We didn’t get any champagne (no surprise) or even juice. I figured out later after not even water was available, that there are many different needs in this place and not everyone is allowed/able to drink and it’s too much for the staff and volunteers to know what’s what. Next time I will know better and bring my own. There was a girl sitting next to me with a big tray on her wheelchair, and a sign that read “please do not give any treats”. Of course I’m reminded of the “please don’t feed the animals” signs at the zoo. So sad.

I saw the old lady I spoke of the other day sitting right up front with her son, so I wheeled up to say hello, just as she left. Her son was still there though, so I knew she’d be back. I figured I’d just sit up there and wait. Then I saw, out of the corner of my eye, the old man who hit on me yesterday. I knew he was coming for me! He wheeled right up beside me, and asked me if I had a boyfriend. Why-oh-why didn’t I just say “yes”? Coach K. would have covered for me. But I said “no”, and uncomfortably tried to avoid the next question. “Can I hold your hand?” As he asked I could smell the linger of cigarettes in his mouth. He must have just been outside for one. Since my right hand was in my brace and my left hand was busy tapping my thigh to the music, I mumbled something along the lines of “no”. He told me he had lived here for a year and really wants a girlfriend, and “you sure look nice, what would be wrong with that?” Oh, shit. I told him I wasn’t looking for that, and by that time Judy (the old lady) had returned so I focused my attention on her and her son, Rob. The old man (I’ll call him Frank, because I’m pretty sure I will see him again. This is a fairly big place, but small. SO SMALL). Frank wheeled away heart broken. I hate rejecting people, but come ON. You’re probably 30 years older than me and reek of cigarettes. Is it horrible of me to say that if I knew for sure he was mentally challenged in some way I would have given him the thrill of holding my hand and let the crush continue, but he seems to have his wits about him so I didn’t want it to carry on? Because yes, Donna, it is SO MUCH BETTER to lead someone on with a developmental disability. Instead I talked to Judy and found out where Rob’s room is, and she promised he would talk to me once he got used to me and I promised I would visit him.

Oops, I just remembered that the permanent residents in Frank’s unit are aged 18-65. So he can’t be older than 65. But still, too old for me, and smelly.

I hate my hair.

Tonight at dinner I found out that Tom is 80 and Nick is 42. I honestly thought Nick was younger than me! So I think I am officially the youngest person in this unit. Go, me. Also, if Nick had been downstairs for the party, I would have made him pose as my boyfriend when Frank came around. But I think Nick is too cool to hang out in the coliseum with that gang. Every time I’ve been by his room the door is closed. Once I heard music blaring. I bet he’s a brooding loner, into heavy metal and technology. He’s a good looking fella, I bet he would have been a lady killer if he wasn’t confined to a wheelchair with severe cerebral palsy. I am determined to get to know him, however, and figure out what makes him tick. We are the closest in age in this place, I have made him laugh more than once, and there is potential for a good friendship there.

Well, I hope to be asleep at the stroke of midnight when the rest of you are ringing in the new decade. Have a good one, I’ll talk to you in Oh-Ten!

Today I’m attempting the “don’t speak for an entire day” from my 101 list. I figure I’d do that one early in case I don’t succeed… I will have every other Sunday to keep trying! I am Home Care free every second Sunday. I consider it my “day off”. I don’t have to get up for anyone or anything, I stay in jammies all day, I catch up on recorded TV shows from during the week that I didn’t get around to watching yet. Today I think I’ll rent “Bruno” because so many shows ran repeats because of US Thanksgiving. I watched “Funny People” last night. It was good, but not funny! If that’s what you’re expecting. Of course it has funny bits, but it’s about the lives of stand up comedians and that is rarely funny. If you’ve ever known any. The grumpiest, complainy, most depressing person I ever knew/sorta dated was a comedian.

I’m also doing my second “liquids only” day. No food, no talking. It’s like I’ve put myself in solitary confinement! Actually though, yesterday I went out for lunch with a friend and ate so much I was still stuffed when I went to bed. I also strayed from my Core Balance food plan by eating a whole wheat pancake with syrup, (wheat, sugar) so figured I’d follow that with a day of organic fruit juice to make up for it.

Speaking of food, or lack thereof, I did sign up for Meals on Wheels a few weeks ago. I lasted three days. It was hella disgusting! Wow. Their website says you can get “75-80% of your nutritional needs met” with their meals (lunch/dinner). I’d like to know what food group Jell-o falls into? I threw out more than I ate. All three dinners were gross… mashed potatoes from a box, soggy vegetables from a can, and some kind of processed chicken “meat”. Think of the worst food you’ve ever been served in a hospital and imagine it even worse. I can’t believe there are seniors and people out there that have no other choice but to eat this crap. I now buy some groceries for my mom and when she makes dinners, soups or chili she sets some aside in containers and freezes them for me. When she comes over on the weekend she brings food for my freezer and I’ll get her to make me a stack of sandwiches and hard boiled eggs for the week.

Ugh. Now I’m hungry for an almond butter sandwich on organic kamut bread. Heh. Mom’s in MEXICO right now, so I’m going to attempt to make my own hard boiled eggs today. I’m a little worried about the pot lifting, so I may wait until dad is here tomorrow. Hard boiled eggs is about the only way I will get protein in me for breakfast.

Hm. Well the above was written two weeks ago, I’m obviously not on the blog ball. I DID end up renting Bruno. I did NOT need to see that. Some parts were very funny and shocking in a *good* way (the parents? Willing to put their kids in any situation for fame?! The “gay therapist” guy?!) but most of it was shocking in a NOT so good way. A little too much there, Mr. Cohen.

I also didn’t stick with the “no talking”. I was doing so well and then I totally forgot about it when my phone rang at 8:30 and I answered it.

YAAAAAY I saw The Polyjesters on Friday night. They were performing for a Swing Dance Calgary event so everyone there was a swing dancer except me and Shawna. Talk about fun! They’re a young and energetic group of people who filled the dance floor like a scene out of the 1920’s. So naturally the PJ’s played all their old swing and jazzy covers rather than their usual set lists. Every show is different with them. And I LOVE to hear Jason scat, and sing like Louis Armstrong, and Sheldon is great at belting out Billie Holiday. I got to take my power chair out again and ride Handi-Bus with Shawna’s help. Thank God for Shawna. She helped me sooooooo much that night! It helps that she has been working in the field (around persons with disabilities) her entire career and is a Handi-Bus expert! We both need to call and complain about the driver we had for the ride home. What an ASS.

So, we have snow. And cold. It sucks to be here right now, lemme tell ya. Last weekend I didn’t get any Home Care because no one could GET to me, the roads were so bad and they didn’t even start plowing in my building’s parking lot until Monday. It’s really bad ths weekend, too, but my home care did make it eventually. Right now we are sitting at -27° C (-16.6° F). Brrr. We are getting a Chinook next week, thank you Mother Nature.

Last weekend I worked on my “10 happiest moments” list and I couldn’t narrow it down to just “moments” or just 10. I didn’t even have to think about it so I know if I actually thought about it, there would be so many more beyond the few years I hit on. Anywhere, here is the list I compiled, and where they happened during a time I had this blog I linked to it, so for a trip down memory lane and the days where I was mobile and able to travel and get myself out and about, click away. They are in no semblance of order.

1. Old Montreal with Rob, Lindy, Emma, Lobelia
2. Dinner with the Polyjesters backstage before a show, taking pics
3. The day AH asked me out
4. The day I arrived in Montreal and met Emma in person for the first time
5. The day I arrived in New Zealand and met Katrina in person!
6. Folk Alliance in Montreal
7. The day I bought my own condo
8. When the biggest crush of my teen years tweeted me back on Twitter
9. The day I got my kitties
10. Dinner with the Polyjesters, Kim and Rob in Medicine Hat… that whole night
11. The day Susan Jeffers called me
12. When Jim and Pam got married on The Office (kidding! Just seeing if you’re paying attention)
13. That trip to Toronto when everything worked out like a dream!
14. When Sheldon made that video for me on Facebook
15. I might as well just say any time I spend with Jason, Sheldon and The Polyjester family tops this list. Like the casino on my 40th birthday with The Trailer Park Boys and all that. Or their CD release party where they treated me like a Queen (again). I could do a Top 100 moments of my life starring The Polyjesters.
16. Personal concert in my living room from Peter Katz
17. When Rob was here the day after I finally arrived home from 2 months in hospitals after the Wrist Break/Gallbladder Gate ‘06
18. Rob Szabo and the gang taking me to South Country Music Fair for the weekend
19. When I was in charge of booking/promoting the improv comedy troupe at this bar, and I PACKED the place. With media, too.
20. Oh, flashback to 1990 when The Phantoms (band I worked for and saw a billion times in the late 80’s in Toronto) were in town and I had them over for dinner and made the best cheesecake on earth. Now I could go on and list 1,000 things about The Phantoms and my days in Toronto and seeing Duran Duran live in 1984 and ohhhhh shit, this I why I can’t think about it too much!

I guess the challenge IS to actually remember every single happy moment and narrow it down to a top 10. Maybe I’ll do that when I write my book! In the meantime, this has sufficiently depressed me which I don’t think it’s supposed to do. I guess I feel like the best times of my life are behind me and now I just have assisted living and memories of how much fun I used to have ahead of me. GAH I almost made it through an entire entry without feeling sorry for myself! Dammit. So close.

Pepper would like you to know she’s the one with the big black mark on her back left leg.

And Pita would like you to know she’s the one with the colour on her front right leg.

It’s November 15, and I did it! I finished my 101 list. And by finished, of course, I mean I finished compiling it. I have a long way to go to get ‘er done!

As mentioned in my last entry, I’m headed back to the pool. I have been going twice/week, and as much as I’d like to say it’s fabulous and everything is wonderful, it hasn’t been working out that way yet. I don’t know why I thought it would be just like old times. I know I use a wheelchair now, and I know I need assistance with every little thing, and I know stairs are not my friend, so I don’t know why I thought once I got to the pool it would be the same as it was 3-1/2years ago.

On the first day, we arrived at the pool and met my caregiver Lara who was there to help me in the change room. She’s great. We got me out to the pool, I headed straight for the stairs into the pool, grabbed the rail, and FROZE. I didn’t know what to do. Stairs? It was like I’d never seen them before. I waited for my dad and with his help we got me down the stairs slowwwwwwwly and into the water. At which point I started flailing aimlessly. I wasn’t able to walk in the water, stand in the water, tread water, move my right arm or leg AT ALL. I was in shock. What was going on? The staff saw me struggling and tossed a couple foam noodles my way which my dad wrapped around me. They didn’t help much, I was still expecting to do a little deep water workout moves and couldn’t understand why my body didn’t get it. What a difference a few years makes in the world of progressive MS. I think I flailed around for a total of 7 minutes before I was exhausted and knew I’d have to get out now if I expected to tackle those stairs up. It took THREE people to help me get up those (5? 6?) stairs, and I don’t know how long, to safely land back in my wheelchair.

It was rough and I came home feeling exhausted and completely defeated. And in utter shock! What a wake up call for my body to realize just what has happened to it! The second time I went, I knew what to expect so it wasn’t as shocking. Now I know to get a foam belt on me before I hit the water, and am able to do the stairs super slow with just my dad’s help. I still flail about in the water, but I try to do some leg movements and my dad will swing my arm around for me. I only stay in 8-10 minutes because the stairs and change room are difficult and tiring, too. I’m unable to lift my right foot at ALL by the time I get out to the car. I just have to believe, that in time, I will get better at it all.

I’m very grateful my dad is available to help me with this! It’s starting to feel exciting to be back in the water, not just terrifying. I can’t wait for the day I can do those stairs without such a struggle.

Another thing that should help me is that I’ve got a NMES machine on the way, should be here next week. We found one that looks pretty good for a great price. The kind I wanted costs $1,300, so, no. I hope the one I’m getting is just as good, for only $140. The specs are similar. Fingers crossed it works for me, and isn’t too complicated to use. I’m hoping using that every day will strengthen those muscles down my right side that don t get used.

I watched some of the Gemini Awards (Canada’s “Emmy”) which happened to take place here in Calgary last night. I just found out that Cory Monteith, who stars as Finn on “Glee., is from Calgary (he was there). I can’t believe I didn’t know that before! I love Glee. I do. I’m a bit of a Gleek. Even downloaded the soundtrack onto my iPod. Other new shows I’m into are Modern Family and Community. I love me some laughs.

Music Minute! My friend Peter Katz has a new CD coming out… soon, I’m not sure when exactly, but Glen Hansard sings on one of the tracks. Who is Glen Hansard, you ask? Why, none other than the lead singer of the Irish band The Frames and the guy who, along with Marketa Irglova, starred in Once and won the 2008 Academy Award for Best Original Song for “Falling Slowly” (and are now known as the duo The Swell Season). That’s all. I LOVE Glen Hansard and am soooooo thrilled for Peter that Glen is a fan of his work and agreed to be involved! Peter is headed for the big time. He’s so damn easy to love.

Also, my New Zealand buddy Phil Madsen released a new CD called Mr Yellow Tree that you can download on iTunes. I highly recommend checking it out! This is the guy I saw in a bar the night before I left New Zealand in 2001 (this time 8 years ago I was there! Wah!) and he (and his voice) left such an impact on me I still try to keep in touch with him and have been waiting for this CD ever since! He is one talented man.

Sweetie.

“Scratch mah belly”

I started this entry, as usual, a few days ago, and originally opened it with bitching about the Michael Jackson coverage on every channel (the useless stupid stuff like all the things he had in common with Madonna and interviewing Bubbles) but since his memorial the other day, it didn’t seem right to open that way. Did you watch the memorial? It was truly beautiful and moving. I was teary, but managed to keep from bawling, until they showed his kids and Paris spoke about her daddy. Then I totally lost it. And now I can’t watch anything about it without bawling. I guess, like most people, I’m choosing to remember the good stuff. The star that shone so bright that night at the Motown 25th Anniversary that I was lucky enough to see back in 1983. I is old.

So, I went to the orthotic place to get my ankle/foot orthotic brace thingy adjusted. She changed the velcro straps around, but the bottom line is I still need someone to help me put it on. I’m not able to move my right foot and jiggle it around/push it into a shoe so I need help. That’s fine, all home care workers that have ever seen the AFO have asked me if I need them to help me put it on, so I figure they’re prepared for that. I’ll get it put on after I’m dressed and wear it for at least a few hours every day around the apartment.

The next day, Tuesday, I had Janice put it on me after exercises. It was a bit of a struggle, but we got it on and I wore it all day. I could definitely feel a difference, walking was better, even getting up from the chair at my desk was easier for some reason. It seems to keep my leg from stiffening up or something. Even after I took it off, I could notice I walked better that night. It’s like it trains your foot to stay straight and not drop! I was pretty excited.

I called my Home Care nurse/coordinator Gail to let her know I needed the “help put on AFO” added to my “care plan” (every little thing the caregivers do needs to be written in your care plan and they’re supposed to tick it off in your book every time they come; the Health Region loves paperwork). She said no problem, she’d call the Vendor (company who sends me Janice and the others, it’s all so complicated) and let them know.

A few minutes later my phone rang. It was Gail, with a biiiiiig sigh. “They have to send out a supervisor and an O/T”. WHAT? “To make sure it’s being done properly”. Are you kidding me? How do you do it WRONG? It’s either on, or it’s not. Gail agreed, and said she got quite snarky with them about all their “procedures”, and that I had worn the AFO that day with Janice’s help already. This is so fucking ridiculous, it should just fall under “dressing”, like putting on shoes does. It’s no different than putting on a shoe with more force than usual. Like Gail said, “they all know how to do it, they have lots of clients with AFO’s”. Half the Health Region is on holidays and who knows when an O/T and a supervisor will be able to be here at the same time as Janice. And what about when it’s not Janice? Saturdays? Holidays? I’m pissed. And Janice was told not to put it on me again until a supervisor and O/T come out, so I haven’t worn it since that one day. &@*{?!@?!!!!

Speaking of my O/T, he is really pissing me off. He’s the one that showed up that day unannounced and I heard tell the wheelchair rep that he KNOWS he called me and my MS must be affecting my mind. He is an arrogant, high on power ass, like it seems a lot of them in his position are, but I have been tolerating him because I rely on him. I only hope I have another option. Because I spoke to him the other day about the delivery of my power chair (a few weeks yet) and while I had him on the phone I asked him about setting up an assessment for self-managed care once I’ve had the chair for a bit, and see how that helps my independence. He spoke to me in such a condescending manner, like I’m a complete tool, and even laughed at me a couple times, that there is no way in hell I’ll be getting him to do that assessment. I really hope they can send me a different O/T for that because I am ready to file a formal letter of complaint against this asshole. I’d like to know his IQ because I’m pretty sure mine is higher and I’d like to rub that in his smug, self-righteous little face.

That was the part I started the other day. My life is so exciting, isn’t it? I’m understanding why Olivia Newton-John said (with regards to her cancer) to have someone else deal with the “stuff” so you can focus on healing. If only it was that simple.

My home care coordinator called me yesterday to find out if I had heard from my O/T about coming over for my AFO. I told her no, and while I had her, I mentioned my frustrations with that O/T and that I wanted someone else to do my self-managed care assessment. She said “I’m going to have to say something, because you are not the first person to complain about him.” What she failed to tell me, however, is that it appears I am the first person to officially request another O/T because of his attitude. This led to a meeting between my coordinator, the O/T, and a clinical supervisor in which they discussed MY complaints (no one else’s, which pisses me off, because now I have been singled out and the O/T knows I complained about him) and I need to meet with all three of them to “come to an understanding”. I guess there isn’t another O/T for this area to refer me to, so I need to air out my concerns with everyone and the O/T “needs to understand how he comes across” (as a condescending prick). I don’t know when this meeting will take place, but I need to get my thoughts organized. I want an O/T who will be supportive and helpful, not make me feel guilty for needing equipment and assistance. Like this guy does. I need to make a list of my grievances and be ready. My home care worker said today that she has other clients that hate him, but never say anything because they are afraid of how he will retaliate. So I get to do it. Oh, lucky me.

I also found out today from the wheelchair place that I don’t even go in for a seat fitting until August 17, so it looks like I won’t get my power chair until around that time. Bummer.

It is a couple days later now. I really need someone to deal with the “stuff”, this is exhausting and as you can see, takes over my life. Didn’t I used to talk about other things?

This morning when Janice was here, my O/T, Gail and a supervisor all came over to see how much work it is to put on my AFO. It took all of two minutes and it was agreed that it was a waste of time for all, but rules are rules. So now I can wear my AFO every day.

After Janice and her supervisor left, it was just me, Gail and my O/T to have our little “meeting”. The clinical supervisor that was also supposed to be included couldn’t make it. Nothing much was resolved; I sort of came to the conclusion that the O/T is the way he is, very by-the-book/black and white and not as much there to help the client as he is to make sure all his T’s are crossed. He didn’t understand what I meant by calling him “condescending” so I told him if he ever did or said anything to offend me or piss me off in the future I would be sure to tell him directly. We talked enough so that Gail called me later and said “I know what you mean about him.” I expressed my concern again that when I get my self-managed care assessment, he is not the type that will be supportive and helpful because he is not the least bit lenient or pro-client. She told me she would be my advocate and would help me with that when the time comes. So I told her she sure as hell better not leave her position, EVER.

Oh, also when Gail was here she commented that I seem to be moving a lot better. I held up my bottle of StemEnhance, which I believe to be one reason why. But again, I’m not saying too much until the 4 month mark and I’m only half way there.

Well, my next entry should have some more life to it. Lately, the above HAS been my life, so not a lot of fun for me. However, tonight I am going out, Saturday is Russ and Lisa’s wedding, lunch with another friend Lisa next week, going to the Calgary Folk Music Festival as a guest of the fabulously wonderful Good Lovelies, and some hopefully interesting stuff to talk about.

I’m out of brownies and I’m out of money. I’ve got to get to work on applying for a prescription. I’ve also got to get to work, period. I could invoice one of my clients very soon if I got off my ass and finished his year end. Procrastination is something I have perfected, if you ever need tips. So have a lot of other people, as I await them to get off their respective asses and bring me their receipts for the year. So I can procrastinate getting their year ends done, as well. And eventually finish up, get paid, pay my insurance, and buy more brownies.

I’m up to my ears in paperwork again. Not just receipts, but various applications as well. I’m applying for a power wheelchair again; Home Care seems to think I can get it based on the fact that even without automatic doors on my building, I do live beside the rental office and have permission from them to buzz them to come open the doors for me. Which I hopefully won’t need to do, as Handi-Bus drivers will help me, I’m sure. My dad took care of the hallway door that was always closed. After purchasing many doorstops that were removed (building management calls it “fire regulations”…. I call it “too lazy to fix the damn door” because every other hallway door in the building has a mechanism that keeps it open 24/7) he found a way to make the door close reeeeeeaaaalllly slow. This way, I can pull the door open with my left hand, and still have time to back up and position my scooter or wheelchair properly to go straight through the door before it slams shut on me. So far this is working when I take my scooter out, and hopefully building maintenance will leave it alone. It does close eventually, and stays that way, after all.

This was started TWO days ago. I am getting lax again. I did, however, finish that client’s year end and invoice him. I also received a cheque from another client and paid my insurance in full for the next year (I unknowingly, all those years ago, timed it well, that my insurance would come up for renewal during my best financial month). Now I need to package up that client’s year end stuff and send it to the accountant (hi, Shel!) and get to work on my OWN taxes, while I await more work. Exciting stuff.

I am enjoying Twitter. I don’t have a lot of (t)witty things to say, but when you follow the right people, you get good laughs. TV characters such as Michael Scott and David Brent; TV writers from shows like “Samantha Who?”, “The Office” and “House”; actors/producers from above-mentioned shows interacting with each other… of course I have hugely popular Tweeters like John Mayer and Ashton Kutcher on there. And of course I respond to them as if they’re actually going to engage in conversation with me one day. HA!

I never did get to see the Good Lovelies on Saturday. Luckily I learned this in time to postpone my 7:00 am home care call! They were just too rushed. They got into Calgary in time for their show and then had to leave early the next morning for Saskatoon. They will be back here in the summer for the Folk Festival and have promised me sufficient hang-out time then.

Oprah was really good today. She had Montel Williams there, and although the show was about several different stars and how they handled being diagnosed with a life-threatening disease, it mainly focused on Montel and MS. It was very interesting. At first I was mad at Montel for thinking he has the right to talk about suicide, depression, and how horrible MS can be, while he walks around without so much as a cane and has full use of his hands. Like, what the hell does he know, really? But that is not fair at all. He suffers pain I don’t even want to know about and has been through a lot that he has kept hidden. He also works DAMN hard in the gym, takes a hand full of supplements every day, and follows a healthy diet. He deserves to be in as good of health as possible for as long as possible.

Which would be easier for me if I had MONEY and could afford the assistance I would need to do all those things now. Take me back to 2002 and let me do it over from there. That’s all I ask. No ankle-breaky, wrist-breaky, messy surgeries or long hospital stays, and my story would be a little different.

Another two days have gone by! I’m seeing a trend.

In that time I have gotten more organized in my office and tomorrow/this weekend I may even get to my OWN taxes. I finally sent in the forms and qualify for the Disability Tax Credit (since 2002) so I know I won’t have to pay anything. But if I have a refund coming I’d like to see it!

I need a date for next Thursday, the 26th! I bought tickets to see Serena Ryder and I obviously can’t go by myself, but I’m having a hell of a time finding someone to come with me! It’s times like this I really need that power wheelchair. I could just book a Handi-bus and go. The application is filled out (thanks, mom!) and the OT is bringing one by for me to try out on Wednesday. Fingers crossed it works out! Then hopefully it won’t be long before I have my very own. Happy to have it, sucks to need it.

So yeah, I need someone to go to Serena with on Thursday! Spread the word to anyone you know in Calgary. 4th row center on the floor. You provide the ride and W/C assistance, I got the tickets.

Before I go, I have to mention a few things:

• RIP Natasha Richardson. What a complete and utter shock. Love and prayers to her loved ones.
• My dear friend, the amazing and talented Peter Katz, is making a new CD and needs our help! Nice perks. Check it out HERE
• The not-married Conchord got married.

This has become a favourite hangout place of Pita’s these days.

I still haven’t received my StemEnhance. I’m so anxious to try it! As for the cannabis brownies, I’ve decided that they don’t help me sleep (I tried dosages up to two grams, and if that didn’t put me to sleep, I don’t even want to try more!) (I know nothing about grams or ounces of pot and what that means, I just know that I can’t afford that much every day until I get a prescription), but if I eat a half gram one around 7 pm, I have a nice evening. My legs aren’t as stiff and cramped up, and everything from walking to getting up from the toilet is just a little bit easier. And my bladder is great! Plus, I go to bed feeling nice and relaxed. Even though it still takes hours to fall asleep.

I learned a little something about all my other meds, though, including my sleeping pills. As I learned a few years ago when I had to go through gallbladder surgery without painkillers, the LDN I take for my MS blocks narcotics (my personal opinion is that the longer I’m on LDN, the stronger this blocking is) so I went online to find out if marijuana is a narcotic (it only is in the eyes of the law). While researching this, I not only found out that marijuana is not a narcotic, I learned that benzodiazepines are. Which explains why so many of my meds have seemed so useless to me. I currently take the one my neuro prescribed for me a few weeks ago (but quit it the other night when I found this out - before my body got addicted to them, if it’s able to) and used to take another one that rarely seemed to affect me. And, it turns out, my sleeping pill, although not an official benzodiazepine, is in that “family” of drugs. Which JUST might be why I can take as many as 4 throughout the night, barely sleep at all, and not feel affected by them. So I just stopped those meds and I’ve actually slept a little better the past couple of nights. I’ll see how it goes, I may ask my doctor for a non-narcotic sleeping pill to try out. I haven’t told him yet that I’m smarter than him for doing my own research and finding out why the drugs he prescribes don’t do me any good. I suppose I should let him know my discovery.

The above was written yesterday. I received my StemEnhance today! I’ll let you know how it goes.

I’m having a weird week. My regular home care worker has been off sick, so I’m not getting any help until noon. And today they wanted to teach this fill-in (who is also my Saturday help and doesn’t know English well, which is okay for once/week, but any more than that and I would appreciate being able to communicate!) my Range of Motion exercises. Okay. Here is where I get frustrated with home care and the way they do things. A few weeks ago, they set up a time that my worker, the physiotherapist, and a supervisor could all be here at the same time. The reason for that was so the PT could make sure the exercises were being done properly, and so this supervisor could learn them properly as well, and teach another worker for times that Janice isn’t able to be here. So, since Janice is sick this week, they decide this is a good time to train someone else. That being the non-English speaking worker. And then, they send a supervisor that has NEVER BEEN HERE BEFORE. Why, oh why, do they make arrangements for a particular supervisor to be here with the PT, to learn everything properly, just to send someone else entirely?? Big Sigh.

Tomorrow Janice should be back and I will return to my regular schedule. Until Saturday, when I have to get up super early. Helen (the one that doesn’t know English well) can’t ever be here before noon, unless she comes to me before her first client. And since I may have lunch plans that day, I need to be dressed before noon. So I get 7:00 am.

May have lunch plans because the Good Lovelies are on tour and hit Calgary on Saturday. Caroline asked about meeting for lunch a couple weeks ago, but since they are in Edmonton the night before, I’m not sure what time they will be here or what the final plans are. I’m waiting to hear back from them. I may not be able to go to their show, because it is a house concert, and 99% of houses are not wheelchair accessible. I’m waiting to find out about that, too. I love their new album and REALLY want to see them live again, but I’m not getting my hopes up. I will settle for lunch or a visit that involves a bit of a private concert for me

Have I told you about my oatmeal discovery? No? Ohhhh, this is good. I have to credit Dietgirl with linking to it in one of her entries. I never made real oatmeal this past couple of years, because you need to cook it on the stove for about 20 minutes, and we all know I can’t exactly do that. And the instant stuff is crap without the health benefits. So, this is what I do now: before I go to bed, I put one half cup of my beloved steel cut oats in a bowl with about one cup of water. I place it in the fridge to soak overnight. In the morning, I toss the bowl in the microwave for 3 minutes, and voila! Hot cooked oatmeal that I don’t need to hang out by the stove to prepare. This has changed my life. I now get a BIG dose of nutrients in the morning. Not just the oats, but what I add to it - flax seeds, Hemp Hearts, and a nice organic mix of almonds, seeds and fruit. I also add a little pure maple syrup to sweeten, otherwise… gross. I don’t add any other liquid, I kinda like my oatmeal thick and chunky. I highly recommend this method of preparing oatmeal if you’re currently using the “it takes too long to cook” excuse not to get some hot oats into your tummy every morning. My grandpa would SO approve.

My life is so exciting. So much so, in fact, that I have started to Twitter about it.

Oh my God, it’s been a month!! I didn’t realize it had been that long. Most days just seem to meld into the next, especially when you CAN’T GET A DECENT NIGHT’S SLEEP.

So, let’s see… first things first. The Bachelor.

When I wrote my last entry, only the first show had aired. Now he’s down to the final three! My girl Jillian is still there. Except for the fact that every other word out of her mouth is “like”, which is, like, really annoying, I like her. I don’t think she will be the “one”, but who knows. So far I have been right on the money when guessing who will go home each week, but now I’m stuck. All three of these ladies are just lovely. I have no clue who he will choose. DeAnna should be back next week, maybe it will be her? And they’re going to New Zealand, so you must watch, because that is the most beautiful place on earth. Apparently, this season ends with a HUGE bomb drop, unlike “anything we’ve seen before in Bachelor history”. Maybe that means when he is talking to the final woman and we think he’s going to propose, he tells her “I really did meet the person I want to spend the rest of my life with during this process…” then turns to the cameraman and proposes.

This past month has been busy but because I take so long between entries I just can’t write about everything. Hopefully that will change soon, because I’m getting myself a LAPTOP, and will be able to update my blog from the comfort of my chair in the living room. Sitting at this desk kills me and it takes me hours and days of coming back and forth to write an entry. Soon I will be able to do everything in comfort, and only need to be at my desk to work. Because I still need my desk area to work at. Damn receipts.

On the sleep front, I’m still trying new things. I was at the MS Clinic last week and told my neurologist about my sleep problems; he prescribed a medication that should help the stiffness and spasms in my legs in case it’s restless leg syndrome waking me up. This is a different medication than the one my regular doctor prescribed for the same thing because it is also supposed to help me sleep and should only be taken at night. The stiffness in my legs is absolutely crippling, none of these meds seem to work. I do stretches as well, but it’s just another one of those symptoms we live with. Anyway, so far my new meds combined with a sleeping pill or two are helping me get through the night. I’m using my Litebook during the day and eye masks at night. The regular use of my Chi machine along with a couple visits to my chiropractor has helped the hip pain, so that is no longer an issue when lying in bed. My doctor is referring me to a sleep specialist but says it will be about a year before I can get in. I hope the Litebook helps; they say it takes about a month to feel a difference. I have to admit the past few nights I have been sleeping better, which I’m sure is a combination of everything. I really want to get off the sleeping pills, though!

I went looking for the sleep eye masks the other day. I went to a couple pharmacies that were sold out, then tried San Francisco gifts, and they only had ones with boobs. The Body Shop only had the kind you wear over your eyes to relax in the tub. The woman there suggested I try Ardene’s, which is pretty much heaven for a 12 year old girl. I said “oh, sure, I’ll get a mask with glitter and feathers…” and sure enough, they had a huge bin of them, 5 for $10. Of course I had to get a pink one with feathers that says “Princess”. The other four are about the tamest they had, with words like “Superstar!” and bright colours and glitter. They’ll do.

The weekend of January 30/31 was unlike anything I have experienced for quite some time. On Friday, Jeremy Fisher (and again, you can’t deny that is an AWESOME song when you click that link!!) was here! And on Saturday, The Polyjesters played at the Ironwood! I am THRILLED I finally got out to see some awesome live music again; I just wish they had been spaced out a week apart because two nights in a row was too much for me and I couldn’t make it to the end on Saturday

My friend Kelsey picked me up on Friday and after a yummy dinner at the Olive Garden, we went to the venue to see Jeremy. It was a sold out show, and the venue was The Gateway at SAIT, which is pretty big. Jeremy is moving on up! After his amazing show he wandered out to talk to some fans… I rolled on up to him and when he turned to me he said “hi, Donna, how are you?”and leaned in to hug me. To which my response was something cool and casual while inside I was freaking out that he’d actually remembered me. We are Facebook friends, after all. Hehe. Yeah, he wrote on my wall a couple days later and I flipped out because he doesn’t write on walls, he just accepts friend requests and updates his status. ANYWAY, I finally got all my CDs autographed. Kelsey, the sweetie that she is, actually bought me Back Porch Spirituals that night because I didn’t have it yet. Kelsey is awesome. It was the first time I had spent any time with her outside of something Polyjester related. It was well after midnight by the time I got home.

Because I get Home Care in the mornings I’m not always able to stay in bed for as long as I want/need. And I tried to nap during the day, but no luck. So I pretty much knew I wouldn’t last the night on Saturday. My friend Kim and her husband, daughter and a friend came to get me and take me over to the Ironwood. They helped me settle in at the big section the PolyFamily had reserved for close friends I was able to hang out there with Sheldon and Jason a bit, but the room packed up pretty fast and since they knew most of the people there, they were busy mingling. When PolyDad Barry arrived he tripped over my wheelchair wheel and went FLYING SMASH BANG BOOM to the floor. I was scared shitless (because in my life, falls are a pretty big deal) but he got up with no struggle and apologized to ME for being such a klutz and Jason yelled “get that drunk guy outta here!” from across the room. Oh, to be a healthy and vibrant 60+ year old man!

Anyway, it was so good to see everyone I hadn’t seen in so long (Sander even flew in from Ottawa for the show!) and I’m definitely having dinner at the Ironwood again soon. Their new menu is even better than their last one and the food was amazing. My friend Shawna arrived during their second set, and since she had a headache and I was dead tired, her and Kim helped me out of there just as the set was ending and Shawna took me home. So I missed the encore(s) and being able to hug and say good night to everyone, but I know they understand.

You can see photos from that weekend on my Facebook page if you’re my Friend, or the public album is right here. Also, check out the boys stepping outside their “zone” and doing a little Metallica:

On Monday my friend Pam came over and we went to the mall for some lunch and shopping. I decided to buy the supplies I need to grow a bunch of cat grass… Pepper loves the stuff, and the Chia grass I got for Christmas is dead and gone. So I bought some seeds and a couple small pots and a big bag of soil. Then we passed San Francisco gifts where they had a display of battery operated puppies barking away… and I caved. It would have been like walking past suffering puppies in a puppy mill and not taking one home. Only not. Ah, it was 8 bucks, gimme a break. He doesn’t bark though… he plays music and says “hello? Hello? Hellooo?” and my cats are scared of him. Pam had taken a Reiki course the day before, so she practiced on me later and gave me a really good treatment. I have trouble ‘receiving’ those treatments though - as proven during the many Quantum Release Therapy sessions I had a couple years ago and my mom also giving me Reiki - because I have a lot of blockages. A LOT. I don’t know when the break through will happen, but I hope it is soon.

Anyway, aside from all that, my life has been its now-normal quiet self. I should have my laptop (Macbook!! When I’m going to add to my credit card debt, I do it right!) very soon and then I hope to write witty observations on a very regular basis. In fact, I plan to write a book because somehow I have to buy a house in Russell, Bay of Islands, New Zealand and hire my own caregivers and stuff. I have no clue what it will be about, but I need to do it and make a shitload of cash like a certain stay-at-home mom who woke up from a dream and wrote Twilight.

“I would like to audition for the next ‘Twilight’ movie, please”