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...