If there wasn't bad luck, I'd have no luck at all!

This is lovely. I had another accident last night. I think it's because of all the stress I've been under, it seems like every day I'm emailing one caregiver to see if they can cover for another caregiver, and hitting up several people for one shift. It's enough to make me cry every day. And stress is bad for everything. 

So anyway, since that "accident" almost 2 years ago, I can't walk. But with assistance, I do a stand/pivot transfer to my wheelchair or bed or whatever. Last night. I was doing my stand/pivot from my wheelchair to my bed, and I basically collapsed. My caregiver was behind my wheelchair pulling it out of the way for me to pivot onto the bed, so I wasn't able to just sit back down in the wheelchair. Instead, I slid to the floor, with my legs buckling under me, and I heard a crack. I asked my caregiver to help me down, straighten out my legs, as fast as possible. She was freaking out, and I was surprisingly calm. I mean, whaddaya do, right? So I'm on my back on the floor. Lucky for me, it was right under my ceiling lift tracking and beside my bed, and my lift can reach the floor. AWESOME. Saved us needing to call 9-1-1. 

So she put the sling under me, and lifted me onto the bed. I knew stuff was sore - my ankle, knee area - but nothing was swelling up. I was safe on my bed and not screaming in pain, so I figured I'd live. We iced my ankle a bit and she did my usual rub down/massage. I tried not to worry about it, but man, sleeping was more difficult than usual. 

This morning, Mabel came in. I told her what had happened the night before, and that I'd probably skip some of my exercises. Every time she needed to move my right leg or touch my ankle I cringed. She suggested going to the hospital, I was stubborn and said no. (I HATE THOSE PLACES AND I USUALLY END UP IN A FACILITY FOR MONTHS!) We put on my air cast (saved from my last break) and I tried to stand. It didn't go well. We managed to get me in my wheelchair, but the thought of standing to get to my recliner was too much. We called 9-1-1. We went over to my exercise table instead, I thought it would be easiest if I was lying on that and Mabel got the sling under me, to lift me onto their stretcher. 

So I did need to stand one more time. I asked Mabel to sort of "push" me onto the exercise table, or at least in that general direction. I'm not even sure how we did it, but we did it. The paramedics arrived, I explained what happened, and I needed x-rays to see if there was a break, or what. They were REALLY nice and helpful. We got me on the stretcher and once I had everything with me, I called my dad to meet me at the hospital so Mabel could just go home. 

At the hospital, things did move pretty fast. The paramedics I had decided to just keep me on their stretcher as I'd probably be going home again, and since their ambulance (and them) were needed by the city, I think that helped speed things up. So I had my x-rays and the doctor told me I had a small fracture in my fibula (again) but it was very stable (thanks to wearing my AFO - again) so I could weight bare as tolerated. I also have a sprained ankle, so that "as tolerated" is pretty bad right now. A lady came and gave me a knee splint and an ankle brace. I KNOW these things cost hundreds of dollars, so I told her I didn't think I needed the knee splint. She said "shhhh... don't tell him that!" And I said "yeah, but then I get the bill..." and she said she wouldn't send me one! So nice. 

I got home, and lifted into my recliner. The paramedics gave me the blanket I had on as well. My dad, who had been at the hospital and came back here shortly after we did, made sure I had my water and a banana (it was almost 3:00 and I hadn't eaten since supper the night before) and then left. Thalia came in about 5:00; the sling is still under me so I just stayed here, and we'll use it tonight to lift me in bed. I already miss being able to use my Chi machine and stand! I'm so uncomfortable in one spot. 

Anyway, I'm headed to bed soon. We'll ice my ankle again and do some massage and I'll hope for a better day tomorrow!

Stresssss

I know that writing is a gift I have. I know it. Even a Buzzfeed quiz I did said I should be a writer! What is my excuse to procrastinate so much? Why aren't I writing in this every day, whether someone else is reading, or not? And no one is going to read it if I don't write in it, anyway. Those are the questions. I don't have an answer. Just write, goddammit. It's not like I don't have a lot to say. 

The amount of stress I've been under lately cannot be put into words, anyway haha. It started a couple months ago when my self-managed care was switched over to 100% me. I was on "blended" care - on my shower days two people were sent by an agency - but now I'm 100% responsible for hiring and training my own caregivers for all shifts. The good part is, I don't have to deal with that crappy agency anymore. The bad part is, good caregivers have been an issue to hire, train, and keep. 

Before I needed my own people for the shower days (Tuesday, Thursday, Saturday) I knew Christina was leaving soon - she has been with me for years, and for the past year she took over my Monday-Wednesday-Friday morning care while she was in school, as well as my Tuesday/Thursday supper/bedtime shifts. It worked great. But she would be done school and looking for a full time job in her chosen field, but assured me she wouldn't leave until I was in good hands and she'd trained someone for awhile. Since Thalia (another long term caregiver) can't really do mornings unless I'm desperate, I went on the hunt for Christina's replacement. 

Which I thought I found in, let's call her, Lanky. (People who know her are laughing). She was hired to do M-W-F at first, and would also be trained to do supper/bedtimes should I need her in the future (we still didn't know what Christina's schedule would be and we hoped she'd be able to continue doing those).  So Lanky started training, and it was during this time that it was decided I'd need my own people for shower days, too. So I put out an ad for Tues/Thurs/Sat mornings and hired two people for those. Everything was working out so far. 

On the first Tuesday the new girls worked, one told me she just booked a flight back home to the Philippenes for 5+ weeks, leaving in about a month. It was very sudden but she had to go, and understood if I wanted to let her go immediately. I could tell she'd work out great in the long run, and since I had Lanky and the other girl that could cover for her while she was away, I kept her on. I worked it out with Lanky that she'd work Monday to Friday and every other Saturday, as Christina or Thalia could do the alternating Saturdays. This would start in early August. It is now... End of June or early July, I think. 

So we carried on. Christina training Lanky, who seemed a little flaky and crazy, but we hoped just the right amount of crazy. She said over and over that she wanted to be here for me, take care of me until the day I died, that I could always count on her, etc. I tried to ignore the fact that she was a single mom of 3 kids, two different dads, newly engaged to a guy she met the night before she started working for me, that was still married himself, and she wasn't using any birth control. I TRIED TO IGNORE THE RED FLAGS because she was so, oh, I don't know, keen on taking care of me forever. 

So I'm sure you can guess where I'm going with this. Christina wasn't needed in the mornings, so she started looking for a job. She had an offer right away, but they told her to be patient as they were unsure of her exact start date. Long story. Anyway, that was good for me, as that one girl went on her trip and Lanky called in sick. Christina covered for her, and helped me get to the mall this one day, when Lanky was supposed to work, but was "too sick, sore, delirious..."  and of course, we saw her. 

We wouldn't have seen her, but her three year old son threw a grocery cart out of a store and right in front of me, forcing us to stop. He giggled while Lanky scolded him, then realized it was me. Otherwise, we would have gone right past that store. She didn't look sick or delirious. I'm not going to comment about how sore she was, that could very well be true, but I NEVER HEARD FROM HER AGAIN. My guess is, she was super embarrassed. But the way she handled it? Not even contacting me? Child. 

So Christina covered for her every day for as long as she could. I hired another caregiver. She came once, called in that she couldn't come the next day, said she'd be here the day after for bedtime training, never showed up, never called. I hired another girl, who was FANTASTIC, but after coming to me she had a second interview with what was supposed to be her part-time evenings job, and they loved her so much (no surprise) that they gave her full time days. Something I can't do (SMC funds me for a certain amount of hours per week, which I have to arrange for my caregivers, but no one can work full time at this point). So I hired another caregiver, who cancelled on me the night before starting to say HE (yes, I hired a man, I did not care) forgot he had a bunch of appointments that week (read: job interviews) and couldn't come. So I hired yet ANOTHER caregiver, and by this point Christina has started training at her new job, so can no longer train here. This new person is partly being trained by that other new girl and Thalia (both who have saved my ass this past couple weeks). 

Stress. So much stress. Tomorrow is my first day alone with the new lady, so I hope it goes well. It's the range of motion exercises I'm most concerned with. Any caregiver can give you a sponge bath, but not all can transfer you safely and exercise your body properly! Fingers crossed. 

Thalia has had to work a few mornings and bring her daughter. Vicky (the new girl hired for shower days but has now become much more) has had to do Sundays and Mondays as well. She has another job which keeps her away other days. Erika, who has worked for me for a couple years but is now an R.N., has been helping out, too. My friend Shawna has helped out, and even my dad has helped get me in the shower and will need to do a supper shift this week. Now Kristina, who worked for me a long time ago, is going back to school and can do some supper/bedtimes starting next week, thank goodness. Since Christina's shifts at this point don't allow her to work for me at all!

Confused? Try living inside my head and organizing this crap. Stress, I tell ya. I still don't know exactly when that gal in the Philippenes is back and what her schedule is like, as she's going back to school, too. Plus she wants me to help get her sister over here as a "live in caregiver" which would mean tons of lying to the government which I'm not prepared to do. If she doesn't stop asking me and making me feel guilty for "not helping her" then I'll have to fire her. I can't handle it! I barely know this girl and she's asking a HUGE favour of me. I don't qualify and the amount of work, and lying, involved TO qualify is not a risk I'm willing to take.

Bach Rescue Remedy is a staple right now!

Toronto, Part One

Okay, let's get started on some life story stuff. I have said, on more than one occasion, that my 3 years in Toronto are a book in itself - so let's go.

In 1986, when I was 18 years old, I decided to move to Toronto. Since I was about 15, I had wanted to live there and be in the music industry. Not as a musician myself, but behind the scenes. Publicity, preferably. 

My parents were, understandably, freaking out. I had told my mom and stepdad (Bob) that I was moving on Sunday. I think this was Friday at dinner. I called my dad to tell him, and he was livid. My mom was all, "she's 18 years old, we can't exactly chain her up". I had made a decision, and no one could stop me!

I had it set up that I'd live with a family as their "au pair". I knew a girl, Paula, from Calgary (met her backstage at a Glass Tiger/Honeymoon Suite concert, and many more. She was a groupie. I was NOT. Just... a fan who was a virgin!!) who was doing that, and I called her. A couple that were friends with the family she lived with needed someone for a couple months. We talked on the phone, and my fate was decided. They had two boys, three and six, and the mom was pregnant. She figured when she had her baby she'd stay home and be able to look after all the kids, so this was temporary. Being a rich, affluent, Jewish neighbourhood of Toronto, I wasn't worried about needing another family to live with after that, if I wasn't making the big bucks in the music industry yet. I'd been the favourite babysitter in the neighbourhoods I'd lived in since I was 10 years old! This would be a piece of cake. 

So on Sunday, I hopped on a Greyhound bus headed for Toronto with about $100 in my pocket. It was a 59 hour ride. 59 hours. On a Greyhound bus. Luckily, I was from Winnipeg (about the halfway point) and had lots of family there, so I made a pit stop for a couple days. I don't even remember who I saw or stayed with, to be honest! Most likely my grandparents and as many aunts, uncles and cousins on both sides of the family that I could fit in. 

I remember getting back on the bus in the early morning. We were told we'd be arriving in Toronto around 6:00 pm the following evening. Then I remember passing the "Welcome to Ontario!" sign at about 11:00 am. "6:00 TOMORROW?!" I thought. "We'll be in Toronto at 6:00 TONIGHT!"  Ha! Ontario is a HUGE province. We arrived at 6:00 the following evening as planned. November 18, 1986. 

Hilary, the mother of the family I was going to live with, met me at the bus depot. On the drive to her house, she explained the job to me: I start work officially at 4:00 pm each day. What I do before then is up to me (a paying job was needed for those hours). I look after the boys while she prepares supper. I eat with them. I clean up from supper, wash floors, do laundry, odd jobs. If her and her husband are staying home, I can do what I want until the boys go to bed. If they're going out, I babysit. I put the boys to bed every night, EVEN IF THEY ARE HOME. Read them stories, tuck them in, all that jazz that PARENTS DO. I think I had Sunday nights off? I can't remember. 

We arrived at the door, where I met Paul (3) and Roger (6). Roger's first words were "oh, not ANOTHER babysitter!" Poor boys went through this a lot. I had a bad feeling. I was, to be honest, also the first white, Canadian young woman (who was so excited to be living in TORONTO!) that they'd had there; they were used to foreigners, older women, or exchange students. Not people like me. Which may have led to Hilary's less-than-human attitude towards me. 

Anyway, I got free room and board for my (soon to become) slave duties. My room was a little hole downstairs, with no window or closet, and the family deep freezer was in there (meaning Hilary came in and out as she pleased). I had to get on the bed to open the drawers of the dresser. There was a small bathroom down there, with no tub or shower. One hand towel and one facecloth. I could "use the family shower when no one was home".  

Which I did one day, and grabbed the oldest, rattiest, ripped up bath towel I could find in the linen closet to use. Later that evening, Hilary yelled at me for using it. "I GAVE YOU A TOWEL TO USE!" Yeah. A HAND towel. 

I got a job from 7:00am to 3:00pm Monday to Thursday, at a news and tobacco store located in the lobby of an office tower. They sold other necessities of office life, such as panty hose, greeting cards and sandwiches in the fridge. I made $5.00/hour! That was pretty good back then. 

One day I was coming home from work, and it was lightly snowing. Toronto was a lot more humid than Calgary, and it was during this adventure that I learned I have asthma. I was walking across the field near the subway station, a few blocks from home. I was breathing heavy and about to pass out. I knew I wouldn't make it home. Paula lived closer - I remember ringing her doorbell. She came to the door, and I passed out. The next thing I remember is waking up in the hospital, with an oxygen mask on. Paula and the family she worked for were there. NOT the family I worked for! Although they had at least been called. The doctor gave me a ventolin inhaler and a prescription for, I'm assuming, an antibiotic for pneumonia. I was kept overnight on the oxygen and released in the morning. 

I took a cab back to Hilary's house. It's probably better to call it that, than "home". I was met at the front door by Hilary with a shovel. "Shovel the driveway before you come in". I was too shocked to say anything. Like, you know, I just came from the hospital, I have pneumonia, I don't start until 4:00, SOMETHING. But no, I shoveled the driveway. Then, as I was about to come in, "build a snowman with Paul!" as he was pushed out the door. I didn't have mitts on or anything BUT THAT'S OKAY I'LL BUILD A SNOWMAN WITH YOUR SON EVEN THOUGH I SHOULD BE IN BED, THAT'S OKAY. 

Once Paul and I were done playing, I made it into the house. "Would you mind watching the boys for a bit? I need to run to the pharmacy" asked Hilary. I said "oh, I have a prescription I need filled, if I give you the money would you mind doing that?" She looked at me like I'd asked for her unborn child and left without answering. As soon as she came back, I took a cab to and from the same pharmacy she just came from, to fill my prescription. So between cab fares and meds, my $100 was completely spent now. 

I finally laid down, until my official starting time of 4:00. When I came upstairs, I was yelled at because there were dishes in the sink. "Those were from breakfast/lunch, I don't start until 4:00, and do the supper dishes..." "Well, you were HERE and you could have done them, not just walked past them..." That day? Was pretty damn typical of how I was treated every day there. 

My day job at the store was going well. I got myself some money there, little theif that I was. Cigarettes were $2.99 a pack there (super expensive, if you can believe it!) and if anyone put down exactly $3.00, I gave them a penny and their smokes and pocketed the money. I also smoked back then, and never paid for my own cigarettes. I also took scratch & win lottery tickets by the stack (never winning more than $2.00). I WAS NEVER CAUGHT. The owner came in for the cash register tapes, but never did inventory. I guess!

I remember having a day off from both jobs and spending it downtown at Toronto Eaton Centre. It was the Christmas season, so it was very festive and crazy busy. I grabbed some food in the food court, and there was nowhere to sit unless you shared a table. So I sat with a nice lady, who told me all about the Christmas dinner she was planning with her grown kids. I told her I was living with a Jewish family, so there was nothing planned for that day. She told me what store she worked in, and that I was welcome to join her and her family for Christmas, and to pop by the store if I wanted her address. How sweet was that?! I had been told before moving there that Toronto was full of cold, mean people and that I'd be mugged the second I was alone. Not my experience AT ALL. In fact, that day in the mall a man dropped his wallet as he was putting it back in his pocket. I picked it up and chased him down the busy mall to give it back to him. He looked shocked and said "you're not from here, are you!" So maybe the nice people are actually from other places. Ha!

I think it was around the end of November when Paula and I decided we would be going to see Glass Tiger on New Year's Eve, wherever they were playing. Figuring, of course, that they'd be playing in Toronto. We somehow got jobs volunteering at their management office (not sure when we had time?) We stuffed envelopes and helped get their fan club off the ground. Kissing their pictures before we stuffed them in envelopes, of course. Their manager, Gary, broke the news to us that they were playing in Long Beach, California on New Year's Eve, opening for Journey. He told us that if we found our own way down there, we were definitely on the guest list. 

Well. You didn't have to tell US twice. We had no money, so we did the next best thing - applied for department store credit cards. They gave those to anybody. So we filled out applications, honestly telling them we worked part-time for $5.00/hour, and submitted them to the "rush" office. Two hours later we had cardboard cards, until the plastic was received in the mail, and a $500 limit. 

We raced to the in store travel agency and made our plans. This is the best we could get, for $500: leave 7:30 am December 27, take the train from Toronto to Chicago. 22 hour stop over in Chicago, then the train from Chicago to Los Angeles (all coach seating of course), arriving December 30. Bus out to Long Beach. Then leave January 1st and do the same thing all the way back, arriving January 4 in Toronto. We booked it. And so began my life of credit card debt. 

I didn't tell the family I was living with right away. I figured I'd wait a bit. Or sneak out and just leave? I'm not sure where my head was at. But they had plans to attend a company Christmas Party a few days later (a Christmas Party! They were Jewish and there was no sign of Christmas in that house. But the father was, after all, a business man). 

So I was going to babysit, and Paul threw a hissy fit before mom left. It wasn't like him. He was crying and upset and complaining his stomach hurt. So when they left, it was obvious to me that Paul wasn't feeling well. His belly was still hurting when he went to sleep. It was about an hour or so later that I heard him scream and cry out, so I ran up to see that he had thrown up in bed. I cleaned him up, put the sheets and pajamas in the washer, and when he went back down he was FINE. 

Hilary called to see how he was, and I told her what happened. I also told her the bedding was being washed and all was quiet now. But she panicked and said "we'll be right home!" And soon they were. Hilary ran upstairs to check on Paul and told me to wait in the living room. 

She came back down, and proceeded to blame me for sticking my finger down Paul's throat and making him throw up. "He does not do things like that". I told her he was sick, was complaining about his sore belly, but she insisted I had done something to him. "And, by the way, we heard from (the family Paula worked for) and they told us you're going away for a week on December 27. When exactly were you planning to tell us?" Oops. "This is not working out. We want you to leave. We are going away tomorrow night for a few days so we need you gone by 6:00 tomorrow evening". 

Okay. So. I have NO money. I had to work the next day from 7:00 am to 3:00 pm, giving me exactly three hours to pack my things and find a place to go. Paula had a luxury room where she lived, (bed, sofa, TV, phone, stereo, full bath, etc) but I couldn't stay with her considering it wasn't her house. I was a little freaked out. 

I went to work the next morning. There was a woman who worked in one of the offices as a coffee lady, and came by every morning to buy her milk. I always filled her in on the horror story that was my life, living in Hilary's House. This particular morning, she took one look at me and knew something MAJOR was wrong. "You're white as a ghost! What happened?!" I told her how I had to leave that night, but had nowhere to go and no money. She said "oh honey, if I didn't live in a two bedroom apartment with my two sons I'd ask you to stay with me, but there's no room. Here - call Covenant House. They are a shelter. They will take you in".

So, I looked them up in the phone book and gave them a call. I explained my situation. They gave me the address where to go that night, as long as it was before midnight, and they'd take me in. Just like that. Of course, I had no idea what I was in for, being a shelter virgin and all, but I was happy I had a place to go. After work, I went to Hilary's house to get my things (I'm not even sure what I had brought there - a couple boxes I think) and went to Paula's house where we hung out in her glorious room for awhile. I took to the shelter what I knew I'd need - clothes, curling iron, hair dryer, hair products - I had great hair - a few essentials, and left the rest there. 

I took a cab to the address Covenant House gave me over the phone, and was interviewed by an intake officer. I just had to show I.D. that I was between 16-21 (the age range for that place) and was told the "rules" of the house: within 24 hours you meet with a counsellor to work out your plan while living there (job, school, your own place), 9:00 curfew EVERY NIGHT unless you have proof you're working, wake up time is 7:30 and you're out the door by 9:00 to find a job or whatever, supper is at 5:00 and if you're working or will be late you must inform the kitchen staff and they'll keep it warm for you, bedtime 10:00, no physical touching whatsoever, no swearing, no raising of voices, no drugs or alcohol and if you appear to have been using you will be tested/kicked out, pay cheques are signed over to staff and you receive $20\week from them to spend on cigarettes or whatever, the rest is saved for you. Once you have $300 saved, you have a week to find a room to rent and you move on (with lots of help from them if you've completed the program successfully). Meals and subway tokens for job search/work/school provided. Actually, all necessities are provided, which is why you only get $20/week. I had my cigarette source and now a new way to make friends, my mind worked fast haha

After our talk and my agreement to the rules, I was driven over to the main house. I laughed my ass off when I saw where I was - a building not less than a week before I was standing in front of, thinking it was a nice character apartment building in a great location downtown, and stating I would live there someday. Someday. 

I was brought inside and since it was later, after 11:00, the floor was covered in gym mats and young women sleeping. I was told they only had 40 actual rooms and beds, (20 on the boys and girls floors, respectively) so the overflow of girls slept on mats at the main house, and boys at the intake house. As rooms opened up, we'd get one. I was taken to a dining table and given a sandwich and apple juice while they found me a mat and an empty space on the floor. I changed in the bathroom, and amongst all the stares and whispers I made my way to my mat in the main living room, over by the Christmas tree. Oh yeah - my first Christmas away from home would be spent at a shelter! I didn't know at the time, that it would be one of the best ever. 

So I settled in to sleep, nervous about what was in store for me in this new situation but grateful it existed and that I was told about it. Knowing what I know now, there are plenty of scarier shelters I could have been at! This was no free ride, you needed a plan and you needed to follow it. But I'll get to that. 

So that covers about my first... two weeks in Toronto. Yup, It's a gooder. The adventure continues next time!

I'm Here For A Long Time, Not A Good Time

Today I had a phone conversation with a man at Death With Dignity. I told him a bit about my situation and what happened to me after my attempt last month. He said he wishes we'd spoke before that, because he could have told me that wouldn't work. So, I'm not superhuman after all! Mixing all the pills I have wouldn't kill me, they just "mess up your system even worse" which is exactly what has happened. I still don't have my speaking voice, my bowels are messed up, I'm stiffer and weaker than ever. I was all, "but what about all the people you hear about that die from prescription drugs..." And was reminded that we don't know their health problems, how weak their hearts were, etc. etc. True dat. I'm in PERFECT health (OTHERWISE) so that can't kill me!

He told me that due to the laws in this country, which totally suck, the only way to do it legally is to starve to death (if you can't travel to that assisted suicide hospital in Switzerland, which I can't). If your family supports your decision, which they would, the hospital has to follow protocol (or you can die at home) by not giving you any nutrition. I would choose to be at home in my own bed. However, I'm extremely obese, and by the time my body ate away at my fat and actually starved, I'd be lying there for weeks and weeks. I'm NOT willing to do that. Normally, he said, it takes 10-12 days and its not as horrific as it sounds. However, I figure that due to the fact I know I'd need some water to take at least some meds for my pain and stiffness, and my size, I think it would be a loooooooong, painful process. So, there goes that idea. I have no access to firearms and no one would be willing to MURDER me, so I guess it's just not going to happen. Sigh. I'm truly upset by that, though I'm sure others are glad. 

Now what...

Thank God for Diarrhea

I've been home for awhile, just haven't updated. I'm struggling to stand/pivot after that two weeks in a hospital bed. I'm so mad!! I COULD DO THAT BEFORE. It's been a major frustration for me and my caregivers. I'm trying to get them to exercise me more so I can get that back. Fingers crossed.

I got home the late afternoon of the 22nd. But only because I was transferred to the psych ward, where they are in no way equipped to take care of someone like me. I mean, it was horrible. It's a PSYCH WARD. Not a medical ward. So everyone is able-bodied and can get themselves to the lounge to watch TV, use the phone, get water, etc. All of that was taken away from me - my iPad, iPod touch, cell phone, all my meds that I take on my own (supplements and homeopathic stuff for my restless legs). Nursing Aids are not needed, so no one to bring you water or clean you up after the diarrhea the meds they put you on cause. So after one night of staring at the walls, restless legs acting up, no access to anything or anyone; followed by 3 bouts of diarrhea the following morning, which they attempted to clean up but REALLY don't know how nor have the staff, they decided to tell me I WAS there voluntarily and COULD go home if I wanted. It was a Saturday so there were no doctors around, but the nurses couldn't want me out of there more. (We had all agreed the day before, after my transfer, that I was definitely in the wrong place and this was extremely unfair to me, nor were they equipped for me. Someone made a stupid decision). We could not make the arrangements fast enough. They told me I was "leaving against medical advice" (even though I know they wanted me gone) so no prescriptions would go with me. Since the only thing different was a lousy antidepressant that I blame for all the diarrhea, gas, bloating, nausea... I'm not worried.

So paramedics took me home on a stretcher. Almost two weeks in bed did a number on my legs, so my attempt to stand was met by my sliding onto the ground. Right before my lift died we managed to get me on a wheelchair, and they were insisting they just take me right back to the hospital. NO WAY. My parents, Bob, and Thalia were all here when we screamed that. It's the damn hospital's fault I'm like this in the first place!!

Thalia, my dad, Bob and my friend Shawna managed to get me into bed by lifting and getting creative with my bed height. They plugged in my lift to see if it charged, but it was beeping like crazy so I know that means the battery is shot. This was Saturday evening, so there was no way to move until my dad got the lift fixed or a replacement on Monday. Sigh. 

But at least with this being bed ridden, I was able to sit up and use my circulation booster a couple times. I was stretched out and I could roll around on the bigger bed. Monday morning my dad brought in a rental lift, and although Monday is normally a sponge bath day, I asked Thalia to come with Christina so I could get a SHOWER! That was a total of 16 days without a shower. SIXTEEN. 

Over the next week we used the lift and exercised me and practiced standing. It's getting better I think, but it's still far from how it was. Thalia is on vacation (beaching it up in Vietnam, well deserved) now until the 14th so Erika is working extra shifts, but she is teeny tiny and can't help me stand. So it's been a challenge. Between Christina popping by more often and my dad's help we've been managing. But it's a really big disappointment to me, that what I did was OH SO SERIOUS to the doctors, yet I'm in worse shape than before, and NOTHING has changed. Because I "left against medical advice" there is no follow up. No addressing the reasons why I did what I did in the first place. Still not sleeping (and since I took almost everything I had, I can't get more for a few days yet). 

It is now April 3rd. I'm still working on my stand/pivot. I have to keep reminding myself that with practice and exercise I will get it back, it just takes time. I hope. That's the thing about MS - improvements are few and far between. My muscles don't have the memory they once had, and if you lose something it's usually gone for good. I could kill those doctors. You know, the ones who care more about keeping me alive than having any sort of quality of life to stay alive FOR. 

So, aside from working on my ability to stand/pivot, I'm all caught up on my PVR shows and my eating is back to normal. I was pretty sick when I got home, living off chicken broth and burnt toast for a week while the bloating, nausea and diarrhea slowed down. Now I'm back to being constipated, as most bedridden people are. YAY

The Home Care agency has been trying to improve. They've found me one good person, but they still need about 5 more! This morning was a joke. These ladies have been here a thousand times but they still don't know what they are doing!! Saturday should be okay, fingers crossed that who I think is coming is actually coming!

Oh yeah, and my voice never did come back completely. I have no idea why. I'm always hoarse and sometimes can't talk at all! I must have done some serious damage to my vocal chords somehow...? Oh well, I can still write. 

I'm so over this!

I'm still in the hospital. Allow me to bitch. 

I've been in here for 8 days, and it feels like months. No movement. Lying in one spot on a bed too small for me, no excercise or proper stretching (my caregivers have done their best when visiting but it's difficult in this bed), no relief from my itches, no decent sleep since that last Tuesday night, pain pain pain and suffering. Restless legs. Charlie horses and cramps in my feet and legs.  I'm so tired. Everything hurts. I have terrible veins. I've given blood at least 10 times. Always ends in tears. I'm tired of being poked and prodded. Blood thinner needles that are so bloody painful I cried for almost an hour from the pain the other night. The nurses see me suffering and I know it's hard on them, too. HOT. ITCHY. Constipated for a week followed by explosive diarrhea all day. Try having THAT flat on your back in bed. A doctor said to me "just looking at you here, you got the short end of the stick in the health department. I'm so sorry". Except all my tests come back perfect, even the ultrasound they gave my belly, so physically medically there is nothing that can be done. Thalia had a long conversation with the psychiatrist Thursday (after I'd talked to her a long time) and told her, point blank, "she won't try again because she physically CAN'T do anything. But I don't blame her one bit for trying, she has NO independence - she suffers all day - and please call CBI (the home care agency) and stress that it is imperative to her mental health that she gets some consistency with caregivers, and that they know how to speak English and know what they're doing. And stop complaining about her size and do their job." Etc. etc. 

How they think it's helping me to be here is so beyond me. I understand they have their psychiatric protocols and shit but come ON. I just want something and someone that may help me cope and sleep! I WANT TO GET HOME to my cats and have a shower. A shower! It's been 11 days!

Wifi here is non-existent and I've totally overused my dad's monthly MB on his hub. Without my visitors to charge my lifelines (iPad, iPod touch) I don't know what I'd do!

The love and support coming at me from all angles has been incredible. Y'all rock. I've had lots of caring visitors which is so nice and helpful. A decent cup of coffee and a bagel helps (food here is a lot better than the care facility, but still, it's hospital food). 

Okay enough bitching for now...

It Didn't FUCKING Work.

I didn't say "goodbye cruel world" because I don't believe the world to be cruel. There are amazing people and things to do and things to see and dreams to make come true. If you're able to enjoy it, please do that. There are so many simple things you take for granted. 

I, however, am not one of those people anymore. I led a great life while I was still able to. As my abilities lessened, I still made the best of it. But that was impossible to do after September 21, 2012. So I knew, as things just kept going downhill, and the pain and itches and sleeplessness got worse, that I'd be ending it soon. With no regrets. Except credit card debt. But I don't regret what I did/bought to get it. 

So. Seriously. If I can take at LEAST 60 sleeping pills and at LEAST 15-20 Trazodone and not die, WTF does that mean?!?! I wifi printed out my letter to family and friends, typed where to find it on my iPod touch which I lay face up next to me, then took everything. I didn't hold the bottles and have second thoughts. I just said "God, if you exist, it's YOUR turn to take care of me now!" And swallowed them. With a handful of ibuprofen muscle relaxants. 

And I fell asleep. I woke up very groggy the next morning, thinking "oh my god, no way" not "oh thank god, I'm still alive". I was shocked and actually mad, but clearly heard the lady from the Agency walking in, calling me. I couldn't/wouldn't respond and when she saw me, she freaked out and slapped me while calling 911. 

I was in and out of it most of the time, but I remember transferring to the stretcher, arriving at the hospital, afraid I'd get my stomach pumped but just getting a quick hose in only my mouth (if they did more, I'm glad that's blocked out), my mom squeezing my hand, being transferred into this bed. I remember all of my immediate family and two caregivers being here. I remember being told I was being treated for a bladder infection and pneumonia (which apparently I'd had for days, but I take so many supplements and never get sick, that the obvious signs weren't there).

That night I slept like a ROCK.. My mom and stepdad were here for a lot of it, chatting and laughing with the guy in the next bed. And I slept through it all. The nurse took my vitals and everything. I may never sleep again, now that they've removed those pills from my list, but at least I had that. 

The next day I remember well. My caregiver Christina came first, then my brother, then my friend Shawna, then my dad, then mom and Bob, then my caregiver Thalia, then my dad again. Everyone was, of course, very upset. But no one blamed me. No one called me stupid or selfish. They all understood why I tried, but they were "selfishly glad it didn't work". My doctor said I seemed in fine spirits, and is treating me for the infections, but will hand my care over to psychiatry as is his duty. I'll probably see a psych tomorrow. Oh, did I mention I have no voice? I've been using my iPad Notes to communicate with people. It does seem to be improving, but I figure I'm days away from speaking above a whisper. So I wrote the psych a letter, which I showed to my doctor, and he said it was "basically in line with what you told me, just neater and professional and all that. I encourage you to keep writing".

Maybe that's why. But I tell you, I did look for a sign telling me not to do it, in case I actually was making a wrong decision. But there wasn't one. I seriously saw more things and discussions about death and suicide than I expected. Even a tweet from Jim Carrey said "Heaven is always ready and waiting for you, wherever you are". Not that it was directed at me for that reason, but it was one of many signs that it was okay. And even though it didn't work, and I'm obviously a complete and total anomaly, at least I know the important people in my life understand why I might try again. Exactly when or how, I have NO CLUE. Pills were my way out! I'm afraid to do anything that will hurt and since nothing works on me like it supposed to (from surgeries to medicines to skin care, you name it) who knows?!?

And now my family and Thalia have all my passwords and PIN numbers to EVERYTHING!

This Is The End

I know I have really sucked at updating this and telling my stories and all the plans I made for this blog. And now, it really is too late. 

Let me try and explain my "life" to you. I am bedridden. Which wouldn't be the end, if I was comfortable at ALL.  I can't move myself. Caregivers come and go throughout the day. I'm always in pain, I spasm every time I try to move anything, I wear a Foley catheter that always hurts like hell. I watch TV all day because it's all I can do. I only have use of my left hand, and I'm right handed. It's getting harder and harder to breathe.  Yes, I twitter and Facebook and do some bookkeeping on my laptop and am always playing Candy Crush or Farm Heroes. I have two cats that I adore and are the only reason I am still alive to write this. But do you REALLY think that is reason to live? When you suffer and struggle and live in pain 24/7, when the agency meant to send you people to shower you and stretch out your legs do nothing but add stress and frustration to your life and complain about how heavy you are? I fucking hate it. I hate it all. I have not been the same since those paramedics fucked me up on September 21, 2012 and it's just getting worse. And worse and more hellish and worse. I wouldn't want my absolute worst enemy to even have to spend one hour trapped like this. And oh, the itchiness. In all these places I can't reach.

I COULD GO ON AND ON AND ON! Why I'm still alive, I don't know. I take tons of supplements and use my Chi machine. I'm sure that's why, but if I stopped those first I'm afraid the pain and suffering would be so much worse before I went. 

I'm really sick and tired of it all. I'm sorry to those that will miss me, but I have missed myself for way longer. I am so relieved that I don't need to struggle through another day!!!

Bless anyone reading this. Love to all. Whatever you believe, I believe I am walking again. Maybe even dancing. 

A Funny Thing Happened...

I haven't exactly done a good job of keeping up with my resolution to write in my blog often, have I?! I think about this thing every night when I'm in bed. Tonight I actually picked up my iPod and opened the app. My WTF podcast can wait. 

I know I'm supposed to carry on my horror story accident, or be writing my memoirs of days gone by, and I'll get to all that eventually. If shit would stop happening once in awhile, I'd have room in my head to write about other stuff. But shit just keeps on happening...

My mom, bless her heart, bought me a wheelchair van. I had an old taxi van for awhile, but it was an 8 year old TAXI van (ie: run to death) and it didn't last long. My poor mom threw money out the window with that, but at least it was cheap and I got a few good rides out of it. I was devastated when it died and the mechanic said it would cost THOUSANDS to fix (so much new stuff was needed, from battery to engine to springs to oil pan.. ) so my mom and stepdad went on the hunt for another one right away. My mom said she had some money set aside for inheritance, but figured I'd rather want it now in the form of a van, than after she died. Since I have every intention of dying first, I thought that was a good plan!

So they found one via my uncle in Winnipeg. They said it would be cheaper to ship this one out here than get one in Calgary. It was a 2006 Ford E150, I believe. Full sized van with a lift in the back. I expected it would have a raised roof, but they said no, it wasn't needed. This thing is "huge". My uncle measured it. My stepdad measured it again once it arrived. No problem, they said. Me and my (higher than average because of the Tilt feature) wheelchair would fit, no problem. 

You know where I'm going with this, right?

So Thalia was going to take me out in it. She had filled it with gas recently ($120, THANK YOU VERY MUCH) and said it drove like a dream, so much better than the other one. Although, she didn't want to break the news to me that there was no way I'd fit. We'd at least give it a go. 

So this happened...

And that just made my day. 

I feel so bad for my mom. I hope she can get her money back in a sale, if it's true that they got such a great deal. I want to rent it out to people who need it to move something heavy, to get my gas money back! Thalia said I need to advertise "Chick with a Van and Lift" and she'll drive it. 

That was a sad, distressing weekend for all involved. 

And then last night, guess what happened to me? This is TMI for the faint of heart, you've been warned.  I was in MAJOR pain in my bladder/urethra area. Screaming, actually. Writhing around, wondering what the hell was going on. Christina (another caregiver, who worked last night) gave me the Pyridium I asked for, but didn't know what to do. Once the Pyridium kicked in, the pain stopped. She put me to bed, and left. Then, at 3:30 am, I rolled on my back to rearrange/drain my catheter/tubing as I always have to do in the middle of the night, as it gets uncomfortable. Then, THEN, my catheter popped out and rolled off my bed. I was stunned. It just came right out of me, easy peasy. I felt "down there", as I was completely stunned. I could tell my bed was wet and I needed to PEE but I can't do very much without a catheter.  Plus, you know, there's that whole not-being-able-to-get-out-of-bed thing. 

I hated to do it, but I had to. I texted Thalia (she's my only caregiver that knows how to change my catheter, which is normally done monthly) and freaked out. She came right over (I thank God for her everyday) and showed me the catheter that had fallen out. THE BALLOON WAS STILL INFLATED. So that pain I'd been in earlier? Was the balloon making its way down my urethra. THE INFLATED BALLOON. COMING OUT OF MY URETHRA. Thalia used to work in a hospital, and said NOTHING scared the nurses and staff more than if that was to happen. Nothing gave them the heebee jeebees more than the thought of that. Sometimes a person strung out on dope in the ER would pull theirs out *shiver*. And I lived through that. Today, I'm in a lot of pain. I figure that's going to take a few days to heal. My urethra has been through hell, I must say. If that little balloon can come out of my URETHRA, I imagine I COULD GIVE BIRTH. That's a bigger hole!

Hey, Serena Ryder is not performing at the Super Bowl on Sunday, but her song "Stompa" is. That reminded me that I first saw her about 10 years ago! Go Serena x

Hurry Up and Wait

I have been thinking about this blog and updating my story since my last entry. But since I don't already have anything that I can just copy/paste and adjust from, it's once again overwhelming to think of it all. I'm still trying to recover from Thursday - 3 days ago - when I had Botox injections for my bladder. It was a very long,difficult day, and I had some horrid flashbacks to Sept. 21, 2012 that makes me wonder if I'll ever get past it. 

I had to go to the day surgery unit at Foothills hospital for these injections. And because I'm going on the OR table and can no longer stand without a LOT of help and the proper equipment, I have to call non-emergency ambulances to take me on a stretcher both ways. From here, they were supposed to pick me up around 11:30 am. Thalia was here to help me out all day as well. I was to be in the unit by 1:00, but the EMTs didn't even arrive until around that time. 

Once at the hospital I was transferred from the EMT stretcher to the day surgery bed, which isn't much better than a stretcher. There I waited while the nurses did whatever they needed to do and Thalia filled out whatever forms needed to be filled out. I was wheeled to the pre-op area around 2:40, where I laid for about 45 minutes until they were ready for me in the OR. By this time I was in a lot of pain from laying in the same position on their uncomfortable beds, and not allowed any meds/ibuprofen until afterwards. 

In the OR I was transferred to their table, where on one side of me I had a doctor trying to find a vein to get an IV started (I can't drink past midnight so I was severely dehydrated, making it that much harder to find a vein, which are hard to get at the best  of times) and on the other side they're stretching out my bad arm to put on a tight blood pressure cuff, and at my feet I've got nurses trying to get my legs in the stirrups for the injections. I'm CRYING in pain from all areas. It took so much painful poking to get even the tiniest IV possible in me, and then the sedative or whatever meds he had hurt like hell! I was more awake than ever for the procedure, I guess because they couldn't get a good vein for the meds. The procedure itself takes all of 15 minutes. Then they replaced my catheter, transferred me back to the wheelie bed, and rolled me to recovery. 

I stayed there for about half an hour before they wheeled me back to the day surgery unit. Thalia was there to greet me. The nurse assigned to me was a complete idiot and even put my blood pressure cuff on upside down. She got a terribly high reading and when she left Thalia fixed the cuff. "Artery THAT WAY. Now they'll see a proper reading next time". I was hooked up to oxygen through my nose, blood pressure cuff, that oxygen thingy on your finger, and the IV. Terribly uncomfortable, but nobody removed anything for hours...

I was able to eat and drink now, so I had some mini-muffins Thalia picked up and some water. I was looking forward to a decent meal when I got home, since the EMT had been called and I didn't have to be in day surgery anymore. The idiot nurse kept thinking I'd have to "get up and pee" before I could leave, and then "oh that's right, you don't get up..." And I'm on a catheter and peeing all along, dummy. Anyway... Another nurse kept telling us the EMT was to arrive later and later, as they were having a busy night. You never knew if you were going to get EMT or 9-1-1 paramedics, it depends who is available. I imagined it could be the paramedics who screwed up my life on Sept. 21, 2012. I was shaking and imagining how I'd react to seeing them. Screaming, shaking, "DON'T TOUCH ME! DON'T YOU FUCKING TOUCH ME!!" And more screams. My body shivered and spasmed. So I guess I'm not over that. 

I had downloaded "Burning Love" to my iPad for Thalia and I to watch while we waited. I was SO UNCOMFORTABLE. I did get an Ibuprofen and Thalia gave me my baclofen, but nothing seemed to help. I ate a hospital turkey sandwich. So much for a decent meal after so many hours. I just wanted to go hooooome!

We watched the entire first season of "Burning Love" before the paramedics finally arrived. I was finally unhooked from all the tubes (just to have the paramedics hook me up again, but whatever) and was transferred to their stretcher, down to the ambulance for the drive home. Because I had been lying there for so long all day/night and was in so much pain, there was concern how to get me safely onto my lift chair because I didn't feel confident to do a normal stand/pivot from the stretcher. So THESE paramedics did the right thing without even a suggestion, and called the fire dept. for backup. So even though I was right outside my building, more waiting was in store until the firemen came. 

Once everyone was here, they wheeled me inside where I asked that I get on my exercise table to use my Chi Machine instead of the chair, as I needed the circulation provided by the machine and I was going right to bed after, anyway. So they wheeled me over to the exercise table and put the stretcher at an angle and down so low, there would have been no way I could stand from it, anyway. Plus I couldn't quite reach my pole. They promised they would not let me fall, and the group of them worked together to get me safely on the table. SAFELY! It was all done correctly! 

Then they packed up and left me and Thalia alone. Thalia took off my shoes and AFO and helped me lay back so I could use my Chi. Ahhhhhh! 30 minutes on that thing and I was able to stand/pivot again. I went straight to bed, where Thalia rubbed down some of my aches and pains and slathered me with Motion Medicine (a sort of Ben-Gay product that actually works). She spent about 12 hours with me that day, I was thankful I could give her the next day off so she could take a break and Christina worked. 

So I'm almost fully recovered from that ordeal, I think! My right arm hurt like hell all night and the next day but I think it's back to its normal pain level, although still bruised up. I'm having second thoughts about going for Botox again. This was my 4th time, but I think I'll just see what happens when I let it wear off completely. It's supposed to help with the pain having a catheter in my bladder gives me, because of all the bladder spasms. But I don't know how bad it would be now. Maybe I'm delusional, forgetting how much pain I was in before and now that I DON'T have a choice between a catheter or going to the toilet, I should just suffer through this every 6 months.  But I'm weary. 

On Saturday, my mom and stepdad brought over my new (to me) wheelchair van! I'm not able to try it out yet, but hopefully this week. Thalia took it to put gas in it tonight. $120 later! Wow. It better last a long time. I hope this van rides better than my last piece of junk, that I didn't have long, because it turned out to be a piece of junk. I also hope I fit in it okay. It's a full sized van, but there is no raised roof or anything, so fingers crossed the last owner wasn't a tiny person with a low wheelchair! Mine is very high, but my stepdad swears he measured everything. Here's hoping!

The Shit Show Begins

This next part I'm mainly taking from a note I wrote in Facebook. It starts from my hospital admission and ends when I arrived at the first of two "care/rehab" facilities. I did take little notes every day as I suspected I'd need them when a lawyer got involved, but dare I say, it's nearly impossible to sue Alberta Health Services, and my attempts at reaching out to lawyers with my story was answered with a pretty abrupt "No". One lawyer said it was a very specialzed area and gave me the name of the "only" firm he knew that might touch it. They said no. An MLA I know, who's also a lawyer, was the first to tell me I'd have a hard time, but he gave me the names of two good lawyers he knows that practice in this area, but they both said no. And on and on. No one wants to touch this baby. One of the cons of government run healthcare - it's very hard to sue. Plus, I'm low income, didn't lose working wages, and my life always did revolve around caregivers anyway, so what's changed? A whole LOT in my book, but very little to them. 

Anyway, as I said before, I was x-rayed at the hospital and they confirmed a fracture at my ankle. If they had x-rayed me PROPERLY, they would have seen the second break by my knee, but no. 

I get put in the air cast, admitted to the hospital, and told to stay off it for 6 weeks. Which I know to me means at least 6 weeks in a care facility, because I can't manage at home due to all the MS stuff and only having use of one hand. That was Friday, and by Monday the Big-Wig orthopedic surgeon had viewed the x-rays and determined it a "stable fracture" and said I could bear weight as long as the air cast was on. But in bed, I didn't have to wear it.  This made me very happy, as my foot spasms a lot and it's extremely painful when it's tightly in the cast. 

So, the weight-bearing begins by mid-week. I would just transfer from bed to wheelchair, standing for a short time. I screamed in pain every time, but the nurses figured that's normal for a break. Remember, they didn't know yet about the second break (not to mention the torn knee ligament that went undetected for SEVEN weeks. But I digress). I should never have been bearing weight on any of it. 

By the following week, (I'm totally skipping over the side effects I had to pain meds, the bed sore that was developing, the problems with your bowels that come with being bedridden, etc.) they finally started sending physio up to see me and do some bed exercises for my weakening-by-the-day legs. I told them about the pain in my knee, and how much it hurt. When they tried to bend my leg, I'd scream in pain. They said "oh, it's probably soft tissue or ligaments (but not TORN ligaments), you need to ice it". So I did, when I could find someone to fetch me ice, which was probably once/day if I was lucky. But that didn't stop physio from making me exercise it. The fucking BROKEN LEG.

Thursday evening I insisted to my doctor that when I went for my two week follow-up x-rays the following morning, that they include my knee. He was all "oh, soft tissue damage doesn't show up on an x-ray" but for GOD'S SAKE, I KNOW MY BODY AND THERE IS SOMETHING WRONG. 

The following morning, two weeks in hospital now with crappy sponge baths and two, maybe three, (no rinse) bed hair washes, there was a new crew working so I BEGGED for a shower. They decided to give me one right away, before my follow up x-rays and appointment with Big-Wig orthopedic surgeon (whom I still hadn't met). They asked me how I liked the commode in the bathroom, and being a big girl, I said it would be nice if they had any bigger commodes (at home I have a "heavy duty" commode that I figured they'd also have around there). They came back with this HUGE, WIDE thing. Good enough. 

Now. I'm supposed to wear my air cast when bearing weight and transferring into my wheelchair. But NO. I was going for a shower, I could just transfer as is. The "lift team" (two burly guys) came in for the transfer, and also decided I'd be okay to transfer as is. All these professional support staff, they know best. Anyway, we get me onto the big commode, me screaming in pain, but whatever. The nurses wheel me down to the wheelchair shower room. And guess what? The commode is too wide to go through the door. But, my wheelchair fits. So, after the nurses consulted with several stray people in the vicinity, it is decided I will transfer into my wheelchair, go through the door, transfer onto the commode (which fits sideways with no one in it), have my shower, transfer back into my wheelchair, then transfer onto a stretcher taking me to x-ray. All standing transfers, ALL WITHOUT MY AIR CAST. 

I'm in TONS of pain. The x-rays were super painful, as anyone with a broken bone can attest to, extra special pain because I had just done a bunch of transfers I shouldn't have. And while I was in the shower, Big-Wig ortho got called into surgery and could only see me if "she comes NOW", which obviously I couldn't. So my appointment with him gets delayed another week. 

I come back from x-ray and am told "they have a bed for you at Carewest Glenmore Park". I'm soooo happy, because I was there for 6 weeks 10 years prior when I broke my left ankle (and silly me thought I'd be in the same unit and forgot how much MY mobility has changed since then). But this means I will get to move around and not be in a bed all day. I'll be in my power chair and see more than one room and talk to people and go outside and and and... OH IT'S A FRIDAY OF A LONG WEEKEND AND THEY'RE NOT MOVING ME UNTIL 4:00. I didn't think about the mess that would ensue from THAT. 

I get transferred back into bed (by transfer board, so no bearing weight thank god) and around 2:00 my doctor comes in. "Well, it's a good thing we x-rayed your knee, because you've got a break there, too". FUCK. "I asked the ortho team if they wanted to see you, and they said no... The x-rays showed your ankle is the same (my guess is it was healing until the WEIGHT BEARING THAT MORNING) and they want you to wear the air cast 24/7". FUCK. Did I mention that I had a painful pressure sore on that heel from being bedridden? Well. There's THAT. 

So, the (very nice and responsible) paramedics transfer me to a stretcher to transport me to Glenmore Park. The guy in the back with me has a mom with MS who lives at Fanning centre, so we talk a LOT about that. Once at GP, all hell breaks loose. They were NOT prepared for me, at all. The woman who phoned it in from the hospital and the supervisor that took the call at GP, did NOT get the required information. They didn't know I wasn't 90 pounds. They didn't know I had no ability to stand alone or walk. They didn't know I have MS and am virtually paralyzed down my right side. They didn't know how much pain I was in. And EVERYONE who can make a decision or do something about me is GONE FOR THE LONG WEEKEND. Holy fucking shit, I was screwed. 

So with the help of laughing gas supplied by the paramedics, and every staff available (I think), they use a lift to transfer me to a tiny, uncomfortable, ancient hospital bed in their "overflow" room. I had no TV ("no one is here to hook it up until Tuesday") no Internet connection even with the Rocketstick my dad provided (NO connection, and loads of work to do. I need Internet to access my office PC at home and do accounting work). I am told not to bother bringing in my power chair, because no one will get me up until physio is here to assess me on TUESDAY. There is another room they would like to transfer me to, private, with a ceiling lift and bigger bed, but no one is here to enforce this move until TUESDAY. Everything to do with my care will have to wait until TUESDAY. Why the FUCK did the hospital have me transferred to GP on a Friday before a long weekend?!? Oh, of course, to free up that bed and not have to worry about me. 

So, I suffered in pain and bed hatred all night. (I was turned once at 3;00 am because unlike the regular hospital, at least they knew staying in one position is not good for me or my skin). I was told I could see the on-call doctor the next day, as the doctor assigned to me was gone until TUESDAY. The following morning the NA from HELL (she was bad. Just... So bad) brought me soggy cold white toast and decaf coffee (the usual... I HAVE been to these facilities before) and gave me a crappy wash. I learned later that she was "one of our best!" HAHAHA. At noon I asked when I could see the doctor, and was told "oh, he's been and gone". Fuckity fuck fuck. 

But, to my surprise and amazement, they were actually able to move me to the other room that day! The bed was much bigger, but HOLEY HELL IT WAS HARD. And still ancient. Seriously, Carewest is where old hospital beds go to die. And I had Internet! I was beside the front desk so I could get a connection there with a Rocketstick so I was able to work and occupy some time. 

So, I sat there all weekend, still uncomfortable, still in pain, broken and bruised, surrounded by the same four walls, with no one that can do anything about it until TUESDAY. 

Next up, I'll talk about what happened TUESDAY and the weeks that followed. This saga is far from over...

"Don't bother bringing over the power chair, because it's mine anyway". 

The "Accident"

I need to write about this. Not sure how many pages this will be or if I need to do it in separate entries over several days (it's a lot to write, and a lot to read) but since it is the thing that I'm most angry about in my life and I've been unable to let it go, I need to put it out there in its entirety. 

It was September 20, 2012, and I was vomiting. So much so, that my caregiver Thalia (the awesome, beautiful, fabulous, lifesaver and good friend Thalia) stayed with me all day and night. I hadn't eaten for 2 days and could not stop throwing up bile or having bouts of diarrhea. Thalia stayed nearby to clean me up and stuff. 

Around 5:30 am the 21st, I vomited more bile, but this time it was full of blood. So an ambulance was called. 

Shortly after, a two man crew arrived and stated they were done their shift, but they were there to assess me and wait for the other crew to show up. I was stable, so we just waited for the next ambulance to arrive. 

The next crew came in shortly after. These were two women. As a side note, Thalia had been a paramedic for 15 years and an EMT for 3 years prior, a total of 18 years in the emergency medical field in New York City. She is no stranger to night shifts and early morning calls on the ambulance, and sensed in both crews a bit of annoyance in the way they presented themselves. They didn't want to be here, that's for sure. 

The first crew asked the second crew if they needed further assistance after they and Thalia explained the medical situation they were facing. This is the information Thalia and I gave the transporting crew before they even touched me: I am (was) a 44 year old female with MS. I am hemi-palegic on my right side, meaning I have no use of my right limbs. I had been vomiting for over 24 hours and having diarrhea for about 6 hours. They were told, SEVERAL TIMES, that I was very weak from all this (and the fact I had taken another sleeping pill around 3:00 am, it was a rough night) and stated I didn't feel strong enough to stand up, even with assistance. They were also shown the bowl 'o blood. 

Although we didn't tell them how much I weighed (I didn't really know, anyway), I am visibly a large person. Huge. 

So the second all-female tiny person crew told the all-male larger person crew to leave, even before they had attempted to transfer me to their stretcher. Which was outside the apartment, by the way. 

I was sitting on the edge of my bed all this time. They asked Thalia how I usually transferred to my wheelchair, and she told them, on a GOOD day, (like, when I've slept and haven't been vomiting for 24 hours) I hold onto the secure pole beside my bed, stand up, and pivot to sit in the wheelchair as it's wheeled behind me. (Or, I used my walker and walked up the hall if it was a really good day). We both stated again that since I'm so weak, this may not be the best solution. I also reiterated that I didn't feel strong enough to stand up, assisted or otherwise. 

The paramedics said "well, we're going to make you stand anyway. We'll help you and hold you up, but you'll still do most of the work". (?!?!) Thalia was ready with the wheelchair right by the bed. One of the paramedics wasn't even in the room at the time the other one was attempting to help me up. With her help, I stood up and immediately started collapsing, stating that my legs weren't working. The medic that was assisting me was struggling to hold me up, but I was practically on the floor. Now, everyone SHOULD know, and certainly people I've been around in the medical field know this, that if someone is falling, you don't try to stop it or struggle to keep/get them up - you HELP them fall safely. You let nature take its course and let them fall, but hopefully you can help them down so they don't break bones or hurt themselves. I was SCREAMING in pain, "my leg! My leg! Put me down!" And the other medic came running and joined the other one to try and make me stand. They raised their voices, commanding me to use my good leg and stand up. Thalia was behind me with the wheelchair, in case they did manage to get me up, but I kept sinking down. Thalia says she observed my legs and saw they were twisted in a very un-natural position, and it was obvious I was screaming out in pain because my body weight was increasingly being let down on my twisted legs. We were both begging them to put me down and lay me across the floor. I kept screaming that my leg was hurting, while both paramedics were yelling at me to stand up and use my good leg to help them. I yelled "I don't HAVE a good leg today!" The medics didn't seem to want to let me down but I was already down, with my right foot twisted under me in a way that no leg could be unless it was broken. The medics, still unwilling to listen to us, were raising their voices and telling me repeatedly to stop screaming. I kept on screaming in pain, telling them my leg was hurting and to PLEASE let me down! We were both begging them to stop trying and let me down, which they finally did. 

When I was finally laid down on the floor, Thalia was right next to my right foot which was twisted to almost 180 degrees and pointing backwards. She gently straightened my leg, and I finally stopped screaming. That entire horror show lives in my head, playing over and over, giving me constant creepy crawlies. 

At that point the two medics decided to call the fire department for a "lift assist". Thalia automatically started checking my leg for tenderness. She had put my AFO (ankle foot orthotic - lower leg brace thingy) and shoes on before the arrival of any ambulance so I would be ready to go, (and thank god she did, as I believe it kept the ankle break stable instead of so messy I'd need surgery. Like my left ankle. But that's another book) so she palpated the exposed part of my leg. Instantly one medic (I call her the Bully; the other one just kind of went along with her), speaking in a condescending tone told her to "back off" so she could assess my leg. She poked my leg twice asking if it hurt, and both times I answered yes, and that was it. They never addressed my leg again.

As we waited for the firemen, Thalia tried to make me comfortable. She was slipping a soaker pad under my butt in case I had another bout of diarrhea when the Bully said "doesn't she have a diaper you could have put on her?" in a very condescending and rude tone. I was undressed from the waist down because of the fact I'm not able to undress fast enough while having diarrhea and Thalia alone can't help me fast enough. I was also too weak to even get to the commode that day. Thalia explained this to her, who then said "get a diaper and put it on her", speaking again as if Thalia was her personal servant. As Thalia got up to get a diaper, she told her to watch her tone, adjust her attitude, and not speak to her that way again. Bully then told me that I shouldn't have been screaming because it didn't help matters. I said I was being hurt and couldn't help it. The other medic chimed in by saying that still, I should have kept quiet. Thalia could not believe what she was hearing, but she just wanted to get me to the hospital so she didn't want to prolong this situation by making any comments. 

As she was done putting on a diaper, the firemen arrived with a special sling type carrying device. All four of them carried me to the stretcher in the hallway. And it wasn't easy. To think there had been 2 men there earlier who were sent away by Bully makes my blood boil. This could have been avoided. As they strapped me in, Thalia noticed my right leg hanging off the stretcher, obviously deformed, and again she said to Bully that she felt like there was definitely something wrong with it, possibly a dislocation or a break. Bully said nothing in response. 

 

Thalia wrote in her account later (which much of this is taken from) that in all her years of emergency medicine, she had never witnessed such blatant disregard for patient care and safety. The transporting paramedics were rude, negligent, and abusive. 

Once I was in the ambulance, I begged a medic to please take off my shoes and AFO, as there was definitely something wrong and it hurt like hell. She undid everything and proceeded to do the "does this hurt?" poking in three different places, to which I answered "yes" to all of them, and again - that was it. I'm sure she huddled off with the Bully and they agreed not to mention it or take responsibility. 

I got to the hospital and was admitted for having vomited blood. As the medics left, I heard the Bully casually say to a nurse, "oh, and she's complaining that her ankle hurts" as she scurried out the door. 

When I was finally seen by a doctor, I told him what happened with the paramedics (very condensed version) and that my ankle could be broken. Of course, at the time, I only felt the pain in my ankle the most. Over the weeks that followed more breaks and injuries would reveal themselves, but that night all I got was an ankle x-ray. A proper examination was NEVER done because of how it happened and no one wanting to take responsibility, I guess. Plus, I have MS and barely walk anyway, so it's not like I NEED a working leg, so who cares? That is the attitude I faced from almost everyone over the next four months in hospitals. 

Anyway, more on that later. This particular night, the x-ray showed a break in my fibula at my ankle, and that I was to stay off it for 6 weeks. They put me in an air cast and admitted me to a room. I had no idea at the time how much worse it would get, and the life-altering injuries that had actually happened that night. Some of them weren't even noticeable until I got back home four months later. But I'll save that for next time. 

Oh, and by the way, the bleeding was because of how much I was vomiting. I'd scratched my esophagus, causing it to bleed. I've been on a PPI ever since, with no further problems. SO WORTH IT. 

My dad took this picture when I was in the hospital. I missed them sooooo much!