Can You Hear Me Now?

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.

Last morning here.

- Did I mention that I did go down for a “happy hour” when they opened the bar in the cafeteria, and they wouldn’t let me have a drink? They called up to the nurse on this unit and she said “no”.
- I’m leaving at a good time. My roommate has started snoring and making noises at night. She’s also getting cranky. She refused her shower last week, and refused to get off the couch and go to bed. They finally wheeled her in here at 3:30 a.m. Also, yesterday afternoon when I came out of the bathroom she was lying in bed, and I heard her voice: “there was a chair in the corner! Someone took it! They better put it back or some HEADS ARE GONNA ROLL!”. Also? Talking watch. With cuckoo birds that go off 12 times at midnight. She can’t even hear it. I CAN.
- I gave my comforter to Nick. He’s been here since July with the same hospital blankets on his bed (heavy, but no warmth). I don’t have use for a single sized comforter at home, and it was only 20 bucks, so maybe he’ll like it. It’s way more comfortable, lightweight and warm than their blankets.
- Garth is going home today, too! The doctor told him there is nothing more they can do for him here, since he’s just waiting for his MRI in a couple weeks and can just as easily wait at home, hopped up on painkillers. Poor Nick, all the cool people are leaving him!
- Tom is wasting away. I visited him yesterday and will pop in today before I go. I caught a glimse of his legs when a nurse came in to do something, and he is just skin and bones. He lays in bed all day and his boney knees stick up through the sheet. It’s very sad. He’s hooked up to oxygen and the strength is gone from his voice.
- Dementia ladies (of which my roommate is one) are making me crazy. “I’m new here, I don’t know where a washroom is. Me either, I’m new here, too” (after a month). “I didn’t book a room here, I’m not sure where I’m staying! No one knows I’m here, we should call the police!” (afer a month, and many visits from family). “I think that might be my room, I slept there last night, but there is a man in there! My room doesn’t have a man.” “I think he’s a doctor or a male nurse. He’s very tall.” (It’s my dad). Mildred: “SANDRA! SANDRA!” Beth: “Sandra will be coming for lunch, Mildred.” “SANDRA! SANDRA!” “She’s coming at lunch.” “SANDRA! SANDRA!” “Mildred, she is COMING at LUNCH!” and it goes on like that, for hours, day after day.

I can’t wait to detox from fake sweeteners when I get home. I did an online grocery order of organic food for delivery on Friday, I placed an order for some supplements, (including Serrapeptase, I’m going back on that) and started up a StemEnhance autoship again. I hope I feel a difference in a few days of not eating over processed food, canned fruit and fake sugars. I’m so dizzy. I think it’s time to brew up some more colloidal silver, too, and drink at least a few ounces/day. It’s time to make a strict routine and stick to it, mind, body and spirit, because I’ve had my wake-up call of what happens when I don’t. Those days I went through thinking I’d be moving into assisted living and giving up my cats were ROUGH. I don’t want to go through that again, it’s time to get serious and get BETTER.

See you at home. Give me a few days to get settled and get re-used to my home care and clean up the clutter in my place and catch up with work!!

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!

Well, once you’ve made “going home” your goal, they certainly don’t waste any time. I’m a “possible discharge” for Wednesday already, and the only reason they are waiting that long is because I won’t be around here tomorrow to talk to, the social worker is off Monday, and my mom is off Wednesday and will be able to get my power chair home in their trailer that day. I am going to try to talk with someone tomorrow morning before I leave for the day, to try to get more time. I really want to get set up with a lock box at the front door so Home Care (and anyone I want) can access a key to let themselves in. AND I have an amazing opportunity on Wednesday afternoon I still want to be here for.

That would be The Bioness Foot Drop System. I saw a short piece on the news about it the other night (and I never watch the news, or barely any TV here at all, so that was fate) and I thought, woah, that is perfect for me! So I went to their website, didn’t see a location in Calgary, so I emailed them and asked. I heard back from a guy in Montreal who said “oh, perfect timing, we are coming into Calgary NEXT WEEK, can we make an appointment to see you on Wednesday?” D’oh! I tell you, it’s fate. I told him about my current situation, and he wants to come to see me here on Wednesday afternoon with the physiotherapist. I didn’t get that email until 7:00 tonight though, so I haven’t been able to ask anyone if I can stay an extra day for this appointment. I think the physio here would really benefit from the visit too, so I hope they go for it.

Now, these units cost several thousand dollars, but I know from researching it that the government is buying 500 units (from a different manufacturer, though) and funding a Pilot Project for those who qualify. So if Bioness is trying to get in on a piece of that action and I qualify, then I should be able to get funded for it. If Bioness just wants me to buy it, I will say no thanks and go to one of the suppliers that the government is funding for the project (I got all that information today, too, from the place that made my AFO). I just need to qualify, which I will know on Wednesday, and agree to many follow up appointments over the next year. I can do that! If it means I will be walking again, a LOT more!! I will have to walk my very best on Wednesday, to prove to them I am a good candidate. You need to be able to walk at least 10 meters (33 feet). Hopefully that is while wearing an AFO.

Anyway, there are a few things I want to get arranged before I go home. Their only concern is that home care is in place, but really, they let another woman with MS stay here until her house was finished being renovated and more suitable for her, so they sure as hell better not kick me out until I have everything I want in place. Except a new apartment, I know I can’t live here while looking for that. Although… house renos/accessible apartment? Isn’t the waiting time similar? I think they played favourites with her. Hmmm…

I just received an email that made me cry. Ange, if you’re reading this, you made me cry! Love to you, and I will respond ASAP.

I tried to have a conversation/screaming match with my roommate tonight. It went kind of okay. I feel bad for her because she is so alone and sooooo bored. Her son comes once every few days, but she doesn’t have the ability to make friends (hard enough with this crowd, anyway!) or a computer or her own TV that she can turn up as loud as she wants. The past few days she has been putting herself to bed at 1:00, thinking (and probably hoping) that it was bed time, until the staff caught her (they don’t respond to those alarms very fast).

Rick was doing better today. I hear his wife is coming to stay here for her recovery as well, so I’m sure that cheered him up. Tom, on the other hand, has been replaced at our table by Garth. I panicked, “what happened to Tom?!” and was told he is too sick and will not be returning to the dining room for meals. Goddammit. Nothing against Garth, who is funny and talkative and interesting and only in his mid-50’s, but Goddammit. Nick reads my Facebook so he knows I’m going home next week, and was all “not fair! I’m going to die in this place!” Geez, I hope not.

Pita, hanging out.

This was one of my Meals on Wheels dinners. Ick. Even Pita just picked at it!

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?