Can You Hear Me Now?

Current residents: I think we have three people in my pod attached to alarms that go off every time they try to stand up, so lots of beeping and babysitting in the vicinity. Mildred the crazy talker is still here. One lady I thought was “normal” and went to strike up a conversation with, told me she has 8-3/4 kids. “We started with two, and now we have eight and three quarters.” Further attempts at conversation proved that she is not, indeed, “normal.” There is one old man who can’t communicate but is always trying to wheel himself (at a snail’s pace) into my room. Even when I’m not in here. There are so many old, sad people sitting out in the TV room at any given time it’s a depressing sight to see. I mostly hole up in my room and surf the ‘net. Except when my Soap is on. There is another lady here that watches Days so between the two of us we make sure the TV is on channel 7 by 1:00! Now I can delete all the saved up episodes on my PVR, I think I’m pretty much caught up. It doesn’t take long, a few minutes/week is all you really need. But what happened to Nicole? She was in prison for the kidnapping but I don’t know how they wrote her off (for now). I know she’s having a baby in real life so I expect she’ll be back.

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

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

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

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

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

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

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

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

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

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

“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.

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’m falling behind on this thing again. I have a lot of time to update, but I’m still sosososo tired it’s difficult to function enough in order to do it. On a positive note (I hope), Mary is leaving on Wednesday. Now I just have to hope that my new roommate will be quiet and won’t need to be checked/changed several times/night, so I can SLEEP.

Nick and I have definitely become friends. I mean, he’s not an open kinda person so I may never find out everything I’d like to know about a friend, but he is definitely going to make my time here more bearable. Even though he probably loves Sarah Palin and has some pretty strong (opposing) views on things that are important to me, he doesn’t seem to push it on ANYONE so that’s cool. He lent me The Butterfly Effect DVD (I had never seen it! Man, that was freaky. I wasn’t sure I’d make it through, after that bit with his dog) and he has an awesome sense of humour. It turns out he has the exact same EMS/TENS machine as me! He had never even used it and doesn’t have anyone to help him with it, so I went into his room the other night to show him and get him set up. It was like the blind leading the blind! Between me only having use of one hand and him having limited use of his, not to mention it’s a small space and we’re both in big power wheelchairs, it was… difficult. We somehow managed to get both his arms/hands hooked up, but I’m not sure if it’s going to do much for him. No matter how high we turned it up, he couldn’t feel it in his arms. That’s not good. I don’t know anything about cerebral palsy and if EMS is safe, but I’m going to see a physiotherapist tomorrow and ask him.

That’s right, I’m staying in a place that has physio on staff, yet I’m going out to see another one. This one apparently has good knowledge of EMS/TENS and supports its use greatly, so that’s why I’m going. The physio here don’t have time to give me guidance if they even care about that, so I’m going to see someone who will. My dad will be with me and considering he hooks me up 90% of the time, it will be good for both of us.

My mom and Bob came by on Saturday, and I honestly can’t remember if anyone else did. Gah. On Sunday, however, my brother’s girlfriend came by early in the morning and gave me a SHOWER! It worked out great, because she dropped my brother off at work at 6:30 am (ugh) and then she came here and I was showered and ready to be dressed around the time the NAs would be coming by for my morning routine, anyway! She said she would come every Sunday to do that, so YAAAAAAY! Two showers/week and a hair wash from the salon another day, I can just squeak by with that. After I was dressed we went down to the cafeteria for coffee. I ate a tea biscuit but I also bought a muffin, because I thought I was so hungry, but that muffin is still in my drawer. Of course when I mentioned to Nick I have a muffin in my room, he repeated it back to me as a question. Which brought up the story that I’m on Twitter, and one of my friends once tweeted something about eating too much muffin, to which I replied “you can never eat too much muffin”, after which a bunch of lesbian groups started following me. He laughed, and laughed.

See, I could never have that conversation with anyone else here. Thank God there is someone here my age with a sense of humour. Tonight Chuck asked me at dinner if I ever ate a weiner. “I sure do like that,” he said. It’s a good thing he’s blind, because Nick and I were about to lose it. The other day over his breakfast sausages Chuck went on about his love for weiners. “They’re so easy, you don’t have to fiddle with them much”. Okay, STOP.

Back to Sunday. At lunch time, my friend Kim came by with her husband Rob, bringing with them not only a latte and some lunch, but a fancy cupcake from Babycakes!! So I can wipe that item off my 101 list. Kim and Rob were in town to host a sweet 16 birthday party for their daughter the night before. Lucky for me! I sure hope they can get into Calgary again soon, they’re awesome. I also forgot to give Kim her Christmas present, so she HAS to come back.

I have a cold. Lovely. All the lack of sleep has caught up with me, I’m so run down. Shoveling back Cold FX, and my dad came by today with the GOOD kleenex. And a cheap comforter for my bed, I finally decided I want to sleep with something besides their crappy blankets.

So I’m going to do that now, nighty night!

I’m so tired. I just want to sleep more than a few choppy hours/night. I asked a nurse yesterday if she had ever worked with anyone addicted to sleeping pills, to help them get off of them. She said she had, but it’s never been successful. I watched Dr. Oz the other day and he had a woman on who is addicted to sleeping pills. Her story was very much like mine, except she’d only been taking them for a year, not EIGHT YEARS like me. They sent her to drug rehab, and she was told she’d probably have about 5 nights in a row without any sleep at all, which is a living hell. But then she should be okay. Well, I figured, I’m barely sleeping anyway, so why not go through that now? I would not be able to function in the least without a couple hours sleep, but since I’m in this place, if the staff knew what I was doing, maybe they’d just let me stay in bed for five days and let me get to the other side. Wash me and feed me from bed, like they do for many that can’t move. But no, she said “this is not the time. You’re under enough stress here, you don’t want to put yourself through that. You are here to get stronger, and you can’t afford to go without even that 2-3 hours sleep. Wait until you get settled somewhere.” Sigh. I think this is the perfect time to do it. I’ll never be able to do it without round-the-clock care. My energy sucks because I am getting soooooo little sleep, and I think sleeping pills are just making everything worse. I want this crap out of my system. And if I’m supposed to be getting stronger here, then move me to a room where my bed isn’t beside the door and my roommate doesn’t need to be checked/changed 2 or 3 times/night!!! I can’t sleep through that. It’s making me crazy.

My roommate had a fall today, while she was transferring to her bed from her chair. Or something like that. I heard her say “oh, I’m going down! Oh, I’m down!” I rang my bell thingy and went out into the main room and yelled “Mary fell!” I swear to God, I have never seen the staff move slower. Sometimes they are truly useless. One lady was feeding some man his juice, and she was all, “oh, where’s Leeann?” without making any effort herself. There were two others yacking in the hallway and they looked all dumbfounded. “Uh - Mary? Mary who?” My mom was here too and between the two of us we tried to get everyone’s attention, and they were all like “huh? what? who?” until finally someone clicked in and went to our room. Geesh.

Nick added me as a friend on Facebook today. That means I had to delete the link to my blog from my page, and any reference I made to it. I just have to hope he never finds this. Not that I’ve said anything bad, but, you know. I talk about him and the people here and although I (mostly) use fake names, it’s pretty obvious who I’m talking about. So, fingers crossed.

Amy went home yesterday. She only had some back pain, so I guess they finally decided she could go back home. 93 years old and still ticking pretty strong. So we have a new person at our dining table now, a 94 year old blind man named Chuck. That makes me the only girl again! Chuck seems super sweet. We chatted a lot at breakfast and lunch. He’s “all there”, too. Just very old, deaf and blind and not managing so well on his own. His wife has MS too, but I’m not sure if he said “has” or “had”. She either “does” or “did” live at another care facility in the city.

I didn’t see him at supper because my mom and Bob came down and brought PIZZA!! Earlier in the day I asked Nick if he wanted to join us. He loooooooves pizza. So I think we’re actually becoming friends, not just on Facebook. Mom and Bob were stuck in traffic for awhile, so Nick and I sat down in the cafeteria for at least half an hour, waiting, and talked a lot. Well, I talked a lot and asked most of the questions. He DID, however, ask ME a question about MYSELF. I think as long as we stay off political discussions, we may be okay. It’s like I told my stepdad, I’m 41 and Nick is 42, so we sort of have to be friends in a place like this! It’s law. Oh, and the question he asked me? “So, are you into sports at all?” Heh. Men.

Speaking of men, this next part is for the guys… my period doesn’t seem to want to visit me here. I am almost two weeks late, so I guess I’m skipping it. I’m never late, so this is weird. It may be my body is under stress from not sleeping or being in any of its usual routine, or I could be hitting perimenopause. I better read that Christiane Northrup book I bought.

The above was written yesterday. I can’t believe it’s mid-January already and I’ve been here almost a month!

I didn’t get home Sunday like I’d planned, but I did get home on Tuesday for a bit. I need more time, though. There is ALWAYS work to do, even if I swear I’m not going to go into my office. And I still haven’t used my chi machine and I have sooooo many shows to catch up on! Pita meows so much when I’m getting ready to go, it breaks my heart. She didn’t leave my lap, this time. I want to stay there sooooo bad! At some point I have to work out something where I go home for the night, with help there.

I had an appointment in early December to go to the Seating Clinic to get the foot pedal on my power chair widened. I cancelled because we had a snow storm, and I didn’t trust Handi-Bus to arrive on time or get me anywhere in less than 3 hours. So I told the guy, “I’ll see ya in the Spring”. Well, guess where the seating clinic is? On the Lower Main level of this very building. So I just went right on down there and talked to the guy, and now have an appointment on the 25th. Which I won’t have to cancel no matter what the weather!

I keep forgetting that one of the ladies here made me a beaded necklace. Actually, she made me two, after the first one was waaaay too small to go over my head, but too big to wear as a bracelet. She is developmentally disabled (she seems to have the mentality of a 6 year old, despite being older than me) and always sweet and joyful, so when the second one she made was no bigger than the first, I didn’t have the heart to say anything. So my brother’s girlfriend had the smarts to tie them together, and now it is the perfect size. And very colourful. Beth gets excited when she sees me wear it and so disapppointed if I don’t (I try to remember to put it on every day). She also says “that’s my friend Donna” every time someone pushes her by me in her chair (she is walking more though, I think she had a fall and broke something, and is probably headed home again soon).

I hope all y’all are doing what you can to help the people in Haiti. So far I have just done so via texting, but will give more via the Red Cross, as well.

Oh, that was a yawn. Off to give sleep another shot. ‘Night!

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 haven’t slept well since those two drug-induced nights when I first got here and had a private room. No offence intended towards Mary, (yet here comes the offending words), I’m sure it would be a problem with ANY roommate and quite possibly the reason I would probably have a separate bedroom if I was married, but the woman eats/drinks/snores over there LOUDLY and NAs come in the room throughout the night to change her. (Maybe you wouldn’t need changing so much if you didn’t drink water all through the night, huh? Maybe??) And of course when the NA enters the door is close to MY bed, the lights go up, the talking at normal volume ensues. Once I’m woken up I don’t fall back asleep so I’m lucky if I get 3-4 hours/night. By 2:00 in the afternoon I’m crashing, big time, but I’m not able to even nap. I’m in bed for the night by 6:00 because I can’t keep my head up anymore. Yet I won’t fall asleep without drugs, which I take after 9:00 pm. Then I don’t STAY asleep.

Vicious.

My mom was here earlier and I just broke down while talking to her. An accumulation of no sleep, no shower, looking and feeling like crap, and generally just hating my life right now. Especially when the NA told me that a shower no more than once/week is the best you will get in any assisted iving facility. How the hell are you supposed to have ANY sort of social life when you’re really only clean once a week? MY HAIR?? If you’re feeling, looking and smelling gross, you certainly don’t want to go places or see people. It’s disgusting. I can’t live like this.

I miss daily showers and getting lotion put on my legs and arms. I miss range of motion exercises and stretches. I miss my Chi Machine. I miss my lift chair, my TV shows, I miss coffee (they only serve decaf here!), I miss going to the bathroom whenever I need to instead of wearing a fucking diaper because I can’t walk and there isn’t staff around to assist you whenever you need it, I MISS MY CATS. I miss my life, even though it was super boring as my mobility went downhill. I now have super motivation to get back into my own home (although a different one, a wheelchair accessible one) with self-managed care. I MUST WALK AGAIN.

I just heard Lindy singing on a commercial out in the main room (the TV is right outside my door, but no one watches MY shows) so that made me smile. Small things. I miss him.

After lunch today I followed Nick back to his room to see his set-up in there. He has more space and is able to get a TV in his room! I have nowhere to put one. The space that could be used for one is a traffic area for Mary and nurses to get to her side of the room. Nick has his laptop, mouse and pile of DVDs on his desk. He uses the Windows screen keyboard to type, one mouse click at a time. I had wondered how he did the typing thing, because he can’t speak well so I knew he didn’t use a speech recognition software, and he only has limited use of one hand. But mouse clicks he can do. I didn’t even know Windows had that feature, so that’s cool. I have a hard time typing on this, but it’s more position and space than anything. I don’t have a mouse (or anywhere to use it, really, since I’m usually in my wheelchair with this on my lap. Except at night when I’m in bed and the little table is across me) so that feature isn’t useful to me. Nick offered me use of his spare keyboard, but I really don’t have a way to use it since my lap is only so big. And I need the screen close.

Now before you get all excited that Nick and I are becoming friends, I honestly think the only things we have in common are the fact that we are close in age, both live here, and are struggling with decreasing mobility and use of our bodies. I took a peek at his Facebook page (which is partially open to anyone) and not only discovered that he is extremely smart, writes well and has a lot to say when he’s able to express it, (which is fine by me), he is also an extremely closed-minded hardcore Christian conservative. So much so, that his fan pages consist of things to do with Jesus, the bible, Stephen Harper and hating Liberals. So I don’t think he’d like me too much if he got to know me. And vice versa. I learned quite a bit about him, though, such as the fact that only a few years ago he lived on his own, worked, walked… about a year and a half ago he had to move in with his dad. He’s only been in a wheelchair since he arrived here in July. Scary stuff, speedy progression.

Oh, and he didn’t ask me a single question about myself, so that says a lot.

OH MY GOD MILDRED IS OUT THERE YELLING TO HERSELF AND IT’S MAKING ME CRAZY. “Larry! Larry! Larry! Come on Larry! Are you coming here? Come on. Please come. I don’t know where to put them! You get us out there. Yeah. I love you. Hey! I don’t have to put anything there? Oh dear, oh dear, what do I do? I don’t know what to do. I’ll give you one. Come on, girl! Come on, tell me! Hurry up. Whatever you’re doing. Are they coming over? These buns. Can you tell me? Anybody? Come on you guys, hurry up. Someone tell me. Come on! Are you on your way out? Hey! Look at me. Are you on your way out? Where are you? He’s waiting. Are you asking us back? Come on, we’re ahead of you. SANDRA! SANDRA! Why aren’t you telling us anything? Come on, say yes. You say yes, sir. Will you say yes sir? I don’t see that other American down here. Can you tell us? Come here, please. Please come here. Will you ask him? Will you please? Hey! Hey! You! Do you want a piece of this? Why not? Did I spoil it? Did you tell me what to ask for? Come on…”

Day in, day out. My friend Pam visited me yesterday and she’s pretty sure Mildred looked at her and asked “do you have a gun? I THINK YOU DO!” Hahaha! I don’t doubt it. Pam was dressed in black, including hat.

Today I received a wonderful package from my friend Gail in Toronto. She texted me when I first got here to ask if I needed anything, and I wrote back “I don’t think you can ship me a latte”, so what did she do?? Send me a box of individual packets of powdered vanilla lattes, mochas and hot chocolate mixes. And Chai tea bags and some chocolate. She rocks SO HARD.

I also had a couple male visitors yesterday. My friends Jay and Marc popped by. They only had a few minutes to spend though, so they promised to come back soon with Jay’s wife and a latte. And today, my entire family came by. First just my mom and then my brother, his girlfriend, and Bob all came for dinner. Then my dad popped by to show me the new cell phone he bought me so I can have hands free talking (sigh… he never stops, that man) and hook me up for another TENS/EMS session. We’re pretty sure we’re not doing this right so I sure hope physio is more on the ball this week. I NEED TO WALK, IT’S BEEN, LIKE, 6 DAYS. My feet are so puffy you wouldn’t believe it. Can feet burst?