Can You Hear Me Now?

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

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

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

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

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

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

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

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

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

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

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

My blog was down for a few days. Sorry about that, but it’s out of my control.

I am home. I am so very happy to be here. At this point my walking isn’t much better than before I left, and I still struggle to do every little thing, but now that I’ve spent some time on the other side I know I prefer this to that. Not that actual assisted living would be the same as that care facility, (there should be coherent people people around, for one thing) but it’s close enough for me to know I want to stay clear of that for a loooooong time! I pee’d for two days straight, deflating all that sodium from the food out of me. I had puffed up like a balloon, more than just my feet! I didn’t realize how bad it was until Thursday when I pee’d every 20 minutes. And the food would be like that everywhere. And the shower situation. And the giving up my kitties situation. And the lack of privacy situation. I’d much rather struggle here!

It’s nice to have peace and quiet again, and my kitties around, and my chi machine and my bed. I missed my lift chair so much. And fresh fruit, real food, my MacBook, my TV shows (I’ll be catching up for awhile and I even deleted a lot of them!) and so many other things I took for granted. I will be stuck at home a lot again, but I won’t complain about that anymore! I still hope to get stronger and more independent in that area anyway, but in the meantime I have Home Care sending me a lady to help me get out to the mall once/week. I’ll be able to get some shopping done and get a latte and stuff, and someone with me to help me get stuff down off shelves, help me off my scooter when we get back here, put everything away and help set me back up all comfy in my chair. No fear of falling. The increased home care services are helpful, as someone pops in during the evening, as well. I get a lady every morning for personal care, range of motion and lunch prep, and then again at night to help me get ready for bed, refill my water bottle, wash dinner dishes etc. It only takes about 10 minutes but it’s great to have that help.

I won’t even complain that they’ve been sending different people every day and retraining people constantly is draining and frustrating. Hopefully they will get it down to splitting the work between two or three people on a regular schedule so I know who’s coming and when!

It seems a new symptom has reared it’s very ugly head, called VERTIGO. It’s making me crazy! It started yesterday afternoon, when I sat up from using my chi machine. Now it happens every time I get up or down, and sometimes while I’m just sitting here. It’s going to make me sick! I’m getting nauseous. I’ve certainly been living with dizziness for years, but this is more than that! Wow. I certainly hope it’s temporary. I won’t be putting up with this for long… puke.

The above was written several days ago, but this vertigo has set in something awful, so I need to take another break until this clears up. I can’t focus on anything so even typing this is making me feel sick! I’m going to my chiropractor today for a neck adjustment and advice. My doctor is away, so I may need to head to the walk-in clinic tomorrow. I want to get a referral to a radiologist… one of the causes of vertigo is a blockage in the veins, causing interrupted blood flow and oxygen to the brain. So if I can use this vertigo as an excuse to be tested for CCSVI, that would be great! Alberta Health Services has made an announcement that they will not pay for people to be tested. But if I have blocked veins I have a right to know and be treated for it! Grrr.

Tuesday is the day! I’m going home on Tuesday. I did my home visit with the OT on Monday, she made a couple suggestions, and the Home Care transition lady was here today and confirmed my services to start up with home care again on Tuesday (Monday is a holiday and it’s best to start service at the beginning of the week). She said she’d never known anyone to be approved for service so quickly, but I guess it’s because they’re already familiar with me. They just have to add in more time. Maybe they even got my old worker to come back, which would be good in a way, because at least she knows English and my cats love her! Ideally I’d like someone with a little more energy, who doesn’t fall asleep on my couch or while stretching out my hand during Range of Motion. For serious. I’d die a happy lady if the woman I used to get every second weekend was available for me!! But apparently she was in very high demand.

Anyway, I just need to be grateful I can walk enough to go home again and will be getting home care. I’m not going into an institution, I can keep my cats, I can start watching my TV shows again, and I can eat real food. This is a very good thing.

I had my meeting with the Bioness guy today. Unfortunately, it didn’t go very well. He did not get the response from my foot he (or I) was hoping for. He blamed part of it on the amount of swelling/puffiness in my feet and calves and part on the fact that he’s not a physiotherapist. I told him the swelling should go way down within a few days of my being home, and he said he’d be coming back to Calgary in about a month with one of their physiotherapists. So we’re going to try this again, next month! In the mean time, I may call the orthotic place that made my AFO and book an appointment to see if I qualify for a Walk-Aide.

I’m falling way behind on this again! I wrote the above on Wednesday, it is now Saturday night.

Notes from around the care centre:

- Tom is very, very sick. He appreciates when I come visit him, but it’s very depressing for me. Plus, I’m leaving on Tuesday.
- Another person I think may be sorry to see me go is Nick. We have become pretty good friends, and aside from staff here, I don’t think he has many. I ordered Pizza Hut for us last night (and paid for it with heartburn all night) and watched the opening ceremonies of the Olympics in his room. I sure hope he gets his surgery soon and I sure hope it helps him. At this point he has no choice but to go into a 24 hour nursing facility.
- Garth is a really good guy. I just wish I could get my chiropractor in here to see him (and me!) He is in so much pain, and all they do here is give him pain killers. My chiro would fix him right up and he’d be walking out of here, pretty quick.
- The dementia ladies outside my door are making me CRAZY!!!!!!! I wish I could record some conversations so I never forget this for as long as I live and keep striving to get better so I don’t ever come back. Although, when I’m 90 and staying in a place like this I do hope I think it’s a fancy hotel, too.
- My dad has met a kindred spirit here, another father of an adult child with MS who is ANGRY and wants to see the MS Clinic here shut down. They are having a “meeting” on Monday. The guy from Bioness told me a good joke the other day… “what is the difference between a neurologist and God? God knows he’s not a neurologist.” The MS Clinic and the neuros there are a waste of time. Their response to the recent buzz on CCSVI is a joke. They and the MS Society are Pharma’s bitch and I’m SO SICK OF IT.
- I get dizzier by the day, my poop smells horrible (when I even do it!), my entire system is fucked up, there are so many hidden fake sweeteners in the food here because half the people are diabetics, and I’ve never wanted an organic apple so bad in my entire life. I can’t wait to get home to my own food and back on regular SPUD! deliveries.

I’m all set for my appointment with Bioness on Wednesday. I may be here for awhile yet, or home by Friday, it all depends on how quickly my home care can get set up. I was supposed to have a home visit on Friday morning with an OT and PT, but Access/Handi Bus screwed up (no way!) by picking up the wrong person and taking them to my apartment building while we sat in the front entrance and waited. And waited. “Oh, he’ll be there any second”, they told me when I called. Standard answer. We only found out what happened because I overheard the lady on the phone at reception talking about my address and I intercepted “that’s where I was supposed to go!” So my home visit has been postponed to Monday (”we will book a wheelchair taxi and not take Access”), the transition lady who looks after setting up home care won’t be back to get the report until Wednesday, so the earliest I can go home is Friday. And considering my home care needs, I may need to wait a bit for a worker(s) to be available for the hours I need.

So I will still be here Wednesday, and the PT said she’d be interested in meeting with the guy, so I emailed him and told him it’s a go. I’m pretty excited. I also met with a rep from the orthotics place that made my AFO, so making an appointment to go there for a government funded Walk-Aide is my back up plan. But at least this guy is willing to come here and see me, so at least I’ll know if I even qualify for the product in the first place. The Bioness is a superior product, so my wish is that he decides I’m a good candidate to try it out on and get feedback from and gives me one for free!! Hee.

We lost Rick from our table yesterday. They took his name placard away and said “he won’t be coming back”. I guess he had a fall yesterday and is back in the hospital. Sigh. I went to visit Tom in his room earlier and met his wife. He is so weak, thin and sickly looking. I told him I was so worried about him because they replaced him at our table. He said “they’ve given up on me” and I said “no one has given up on you, so don’t you go giving up on yourself!” and his wife said, “did you hear that, Tom?” You can tell she’s scared. She made a comment about spending 58 years with him, and “looking forward to many more” as she kissed him lightly on the forehead. It was really sad. You can see that the Fight is gone from his eyes.

The new person at our table is another GIRL! Her name is Sandy but she’s not very talkative. She has a developmental disability and came from a group home where she fainted and fell. I am no longer the most talkative at our table, that role now goes to Garth. He is very talkative and loves to joke around. His room is across the pod from mine, so there is someone nearby to talk to. I met his granddaughters today, they are so cute.

Nick’s dad brought his camera in, so he is busy with that. Not a lot of exciting things to take pictures of here, you’d think, but a photographer’s eye will find things, and he is uploading his collection to Facebook. I’m not in there, thank God. I swear I would kill him lol I told him he should get a collection of the snoozing heads out by my pod’s TV.

Speaking of, Lawrence Welk is on out there, and everyone crowds around for that! ‘Cept us cool people.

This morning there was a meeting held by the MS Society and the MS Clinic about Dr. Zamboni’s research (and their own agenda, of course). I’ll say now that there were police with guns present, they kicked out the CTV News crew, they didn’t allow for a question/answer period (they only took questions in writing BEFORE their presentation, and chose which ones they would address), and will put “a portion” of the presentation on their website (I’m sure they will leave out the part where they tore into W5 and CTV for bringing this to our attention in the first place). Thank God for W5 and the internet, so we have been able to discuss and read more about it. Thank God for the doctors and vascular surgeons who are excited and looking into it, even if the neurologists and mostly pharmaceutical companies don’t want them to. They said it would be 5-7 years before any treatments would be available for MSers, should the research prove it is a viable action in the first place. I have every intention of being tested/treated before then! My dad spoke with a woman after the talk that had LOADS of info, she was really angry with the way things have been handled by the MS Society/Clinics so far. She told my dad to sit tight for a few months, Zamboni is touring the country and teaching his method to doctors, and there is a LOT of exciting news in the pipeline. She suggested I not go to Poland for treatment as they are using a method that Zamboni does not approve of and it’s not as safe. I see my neuro on Monday and although I don’t expect him to be very positive, I will ask to PLEASE put me on the list for any upcoming trials/studies. Apparently, as of January 23, CCSVI was considered an “official” disease, so I should be able to get tested/treated for it, no? We don’t have the proper equipment here to test for it, but it shouldn’t be long! I will be first in line.

I just spent the past two hours trying to upload a video to You Tube and now I give up. Kitty stuff will have to wait for another day!

Alarms! Going off like crazy from all these people getting out of their wheelchairs when it’s not safe for them! Mildred! SHUT UP! I’m starting to go nuts here. I want to meditate and spend time alone but it is impossible. My room is in the middle of the pod and in the middle of the activity. Too much noise and too many voices.

There are pros and cons to living in a place like this. The pros being (some of) the staff are nice and helpful, meals are looked after, I am not completely socially isolated, and the MOTOmed. The cons being I have no peace and quiet, I don’t have my comfy double bed (I’m sooooo sick of this single plastic mattress), limited showers, crazy voices and alarms non-stop, I don’t have my cats, Chi Machine, TV shows, coffee maker, independence… I could go on and on. The cons definitely outweigh the pros. And whether I went to a group home or assisted living, most of those cons would stay, and some of the pros would go. They don’t give you regular physio in those places either, because you’re just there to live, not get better.

So I have decided I would rather go back home. I just need more Home Care and I must find a better apartment for a wheelchair ASAP. Now that I know I can lift my right foot to walk in my apartment a bit again, that’s where I want to go. I don’t get to walk here except for a little walk once/day with the physio asst. I can get stronger at home by walking more. It’s not easy, but it has improved since using the EMS and the MOTOmed. My Chi Machine will help, too, since I won’t have a MOTOmed. I just need to make a plan and a routine and STICK TO IT so I continue to improve. The Plan will involve more home care, mornings and evenings, downsizing my STUFF and moving into a better apartment. The Routine will include daily range of motion/stretching with home care, EMS, whatever exercise I can do on my own including going back to the pool twice/week, meditation, supplements, Chi Machine, affirmations, visualization and more inner self work… EVERY DAY. Not sporadically, like I have been.

I know I didn’t have the best life being so isolated at home, but I still liked it better than here. I am meeting with the social worker again tomorrow and I will ask her about access to volunteers that can help me get out more. And with spring coming, it will be a lot easier and hopefully by the next winter I will be stronger., if I stick to my routine!!

Today I had another visit with a physiotherapist, one who specializes in neurological disorders, and has worked with many people who have MS, using an EMS machine. She also said I have good range of motion (must keep that up!) and gave me more EMS tips and electrode placement ideas. I think I will get her to come over when I get back home, too, to give me some ideas for exercises I can do on my table there, and using other areas in my apartment for support. I’m sure there is a lot I can do with what I’ve got, if someone has the creativity and knowledge. It’s so hard to pin down the Home Care physio, plus they are paid by the Health Region and can’t be open minded! This lady was interested in my Chi Machine so I’d like to show her that and get her input. She charges by the hour, of course, but I can pay for another visit. Since I’m going home, they won’t be taking away my credit cards. Or the debt.

Now might be a good time to get my musician friends to play a benefit concert for me. “Help get Donna home, into a new apartment, pay for renovations, get some physio, go to Poland for the Liberation Treatment…” something like that.

On Friday I will be making a home visit with the Occupational Therapist from here, so she can see how I’m set up there and what my challenges are. I’ve had the Home Care OT over many times, so I’m pretty sure I’m as set up as I can be, but another set of eyes doesn’t hurt. She just wants to see how I get to the bathroom and get around the kitchen and stuff. She asked me, after I told her I spent the day at home on Saturday, if I “did any cooking?” HAHA as if I ever did that anyway. But I DO need to be able to heat up food/make coffee/get water etc. like I did before. I’m pretty sure it will be a struggle in the beginning, but it should get easier as I get back into the swing of things. I hope, I hope!

Things around the centre are rather uneventful. My roommate is still quiet, which is nice. Except she is now attached to an alarm, so if she tries to get up on her own, it goes off. She is none too happy about that. I heard her bitching to the NA earlier that she’s “not a baby, so stop treating me like one!” She is sooooo hard to communicate with because she is almost totally deaf and has that dementia thing, so we don’t lay here and talk. Her daughter-in-law says she’s bored to death and maybe it would be better if they kept the curtain between our beds open, but she can’t hear me from here even if I yell, so I don’t see the point.

Tomorrow morning I get my SHOWER!

Rick in the dining room was a mess today. I think he is just losing his will to fight, without his wife by his side. At breakfast he said she was here, so I suggested he get his breakfast sent to the conference room or something so he can eat with her, but I don’t think she was here. The Physio Asst. asked him as he left the dining room if he ate his breakfast, and he said “my wife did”. By lunch time he couldn’t even feed himself. He dropped his soup spoon on his lap and didn'’t react. He spilled his water on his pants and didn’t react. He tried saying a few things to me but no matter how closely I leaned in and asked him to repeat himself, I couldn’t make out a word. His food just sat there and sat there. I asked him if he needed help and he just looked at me blankly. The drool factor was insane, too. Finally an NA came over and fed him. It was pretty bad. I wasn’t there for supper (PT was here until after 5 so I went and ate downstairs with my dad) so I don’t know what he was like by then.

Oh, I just remembered (as I just took two) that I haven’t mentioned StemEnhance in awhile. That’s because I didn’t think it was doing anything for me. So I didn’t bother bringing any with me when I came here. But, over the past month or so my double vision has gotten much worse and the other day when I looked in the mirror I saw how much my wonky right eye had moved around and how terrible it looked! So I called my dad and said “PICK UP A BOTTLE OF STEMENHANCE FROM MY APARTMENT NEXT TIME!” because even if all it’s done is helped my eye and vision, that is enough reason to keep taking it!

I finally took the pictures off my camera so I have some relatively recent kitty pics to share until I get back home to take more!

BAH!

Coming, or going?

“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.

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!

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

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

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

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