Dying With Dignity... So Much To Do.

I had a visit tonight with a friend of mine who says it's IMPERATIVE I write the book of my life and if not, I have a year to make voice recordings of my stories and she'll write it. Either way, I need to leave her a voice recording she can listen to for the rest of her life. She won't be able to come cry on my couch anymore (not that she did that a lot - but, boy trouble - you know) so I need to leave her something. 

You know what THAT means... I'm going to have to do recordings for everyone! I was thinking today of all the letters I'll need to write, as well. My Social Worker was here today and we got my personal directive taken care of, but there's not a lot to know yet. I'll have to do up a proper Will and stuff, but she said to call her back in 6-8 months and she'll give me a lot more inside info. She's on an Ethics committee and works for Alberta Health Services, so she'll be in the know. 

I have been writing to all levels of government to tell them I want to be involved in the SCC ruling conversation, how it will be implemented in Alberta. I want to be at the head of the line! I don't want to wait a year for the doctor-assisted death law to come into effect, just to need another year to get psychiatrists to see me and other doctors and blah blah blah. I've seen comments from some people that are devastated by this news - "what will this mean for my aunt with dementia? With handicapped people who feel pressure to kill themselves? For unborn babies?" PEOPLE! It is a CHOICE. You need to be an adult of sound mind and be able to decide for yourself. 

There's so many questions and comments going around. I'm attending a webinar meeting with Dying With Dignity on March 5. One major problem is, we have a Federal election on October 19. So will they debate it and pass legislation before then, or just leave it for the new government? Things need to be in place by February 6, 2016. The SCC said that even if a law isn't drafted by then, the SCC ruling stands. Whew. 

There's losing your mind when your body is fine, and then there's losing your body when your mind is intact. What's worse? I only know what I'm going through. And I can't WAIT to be able to end this. My Social Worker asked me to describe my pain, and why I don't take something stronger, like narcotics. I don't even know how to describe it. I live life at about a 5 out of 10 on the pain scale, (except for my right arm which is usually an 8) and then about 10-20 times a day I get flashes of it going to 11 - my bladder, muscles, joints - and I do take lots of supplements for that. That couldn't be stopped by a narcotic. And as for my general pain, I take a medication at night that's a narcotic blocker (LDN). I've been on it since 2002. The benefits of LDN (low dose naltrexone) are many, and I can't imagine how much worse I'd be without it. Any little bit of energy I do have, I attribute to that. My fatigue isn't NEARLY as bad as others with MS.  I also don't have the nerve pain so many others complain of. I went off it for a couple weeks when my leg was broken and I needed to take narcotics for pain. The DAY I went back on it, I felt like a human again. I don't want to go without it. I also think if I was on narcotics for pain, that I'd be truly bedridden and unable to transfer without a sling/lift. I'm so dizzy all the time as it is, I don't need that to be worse. 

Anyway, I've got lots to do and think about. A year is a long time I guess, but doesn't Christmas always seem to sneak up on us, unprepared?

Supreme Court Decision!

I'm very, very happy that on February 6, 2015 the Supreme Court of Canada agreed 100% to overturn the ban on doctor assisted death! I'm so excited about this. What I'm NOT excited about, is that it doesn't come into effect for a (very long) year. AND because our healthcare is run provincially, the provinces need to go about setting up the system how they want, and I live in a very conservative province. I'm a little worried they won't make it easy. The Federal Government can decide to pull rank and change the decision, but they said "it's not likely".  84% of Canadians want this. The SCC law is clear, and I 100% qualify for it. So, I have this year to get my ducks in a row and plan for my death. At least I can see an end to my suffering, and for that I am very, very grateful. 

People who are around me all the time, and especially those who've known me for years and seen the decline, are also happy for me. Except a couple super religious caregivers that I don't plan to mention it to (they may never come back). But it is hard, when someone asks you "so, what's new?" And you FINALLY, for the first time in years, have an answer that doesn't involve caregiver turnover or a new pain or weakness, and it's not appropriate. "What's new? Oh, the SCC is finally going to allow doctor assisted death so I get to die soon!!! I'm so excited!!!" Doesn't really make for a great casual conversation. I really hate that "so, what's new?" question. I'm in pain 24/7 and struggle like hell to get through a day or a night. NOTHING IS NEW WITH ME, EVER. 

I'm sorry if you're not around me 24 hours/day and don't see it. I mean, I'm not SORRY you don't see, but it's hard to understand if you don't. No one, and I do mean NO ONE, has seen what I go through at night. After I'm put to bed and set up for the night by a caregiver, no one sees me until they come back for my morning routine the next day. And the struggles I go through all night are insurmountable. No one sees it. No one hears it. It's horrible, and I wouldn't wish it on anyone. 

The struggles I have while my caregivers are here to help me shower or exercise or whatever, is SO not fun. For anyone. I mean, HCAs are trained and it's their job to help you, but it's hard and painful for all involved. My muscles, that I work so hard to exercise and try to keep strong, get weaker and weaker. Every move is harder and harder for me. I say "owww" or something similar all day and night. I never know when I'm going to choke or cough because my throat just decides to close off and not let me breathe. I need water to get my swallow reflex back and to open things up. It happens a LOT. I never know when my muscles will stiffen and/or spasm to cause me immense pain. Yes, I take meds and supplements for that, which don't seem to work. I get botox shots in my bladder (day surgery 2x/year, LONG, HARD, painful day of being poked & prodded for very little relief). Botox on my most-useless-yet-most-painful limb, my right arm, hasn't worked after two painful tries. 

I went out on Friday night. Yes, it was nice to get out. It was so great to see people I rarely see, and hug people who are amazing and wonderful. But it's Monday night, and I'm still recovering. The whole night, as much as I wanted to just enjoy myself, I was uncomfortable and in pain. I wanted to want to stay, but I just wanted to leave the whole night. I smile, but I'm not feeling it inside. I had to sit in my wheelchair for several hours, which is basically torture for my legs and knees. Getting wheelchair leg lifts is impossible because of my size, unless I get a whole new chair. And since it barely squeezes between doorways now, a new, bigger chair isn't a choice I have. I'm miserable. My life is miserable. 

Any good people see from me, is me covering up what I'm really feeling for their benefit! No one wants to be around a Debbie Downer, so I often put on a brave face. I'm not an inspiration, I'm not 'so strong". Being in pain and suffering for so many reasons because you don't HAVE a choice is not brave or inspiring! Having the choice soon, is such an exciting freedom.

As most people know by now, I attempted suicide last March. Well, I prefer I "wanted my life to end" to the word "suicide". I wrote my goodbye in here, followed by the one where it didn't work (I'd link it, but I can't do that on an iPad app). I'm even worse than that, today.  I am NOT depressed or have any mental illness whatsoever, my actions were completely reasonable and sane, albeit unsuccessful. I was very upset that it didn't work. That I was rushed to the hospital and stayed bedridden there for over two weeks, including a couple days in a psych ward. WORST experience ever! I never fully recovered from that inhumane treatment (staying in basically one position the whole time, no shower, no stretches, no nothing for two weeks). They care more about keeping a body alive than they do about any sort of quality to that life. My visiting caregivers did what they could, from stretches to cleaning me properly to sneaking in homeopathic meds for my RLS. 

My life is over, people! I'm through with hoping for a miracle. I spent years and loads of money on all that stuff - alternative treatments, special diets, positive thinking, visualization, lessons/books/movies/audio by Deepak Chopra, Louise Hay, Wayne Dyer etc. I'm DONE. I am so over it. I'm tired of trying so hard. Except for my exercise which is DAMN hard, but I can't imagine how much worse things would be without that. And my supplements. 

For those of you who convinced me the suicide didn't work for a reason, and that God has a plan for me (I've been hearing that one for so many years now!) I'm here to tell you, this is His plan. I had a great life, but it's been over for a long time. I've gotten so much worse over the past few years, I don't even know where to begin. But let me tell you, my suffering is unbearable, and I can't wait to die so it can end. 

And for other people in my position, are we not THRILLED?!?! So many people are suffering and in pain, and in a year, if we choose, we can end it. Not everyone will make that choice, but I sure will. I don't have a husband, I don't have children. I believe the last time I had sex was in 2006, and I will NEVER have it again. Just imagine that for a moment... Wearing an indwelling Foley catheter, which only caregivers see and clean, and never being touched or held in a loving way again. You can't even cuddle up with yourself, because your body is too paralyzed, stiff, sore or big to move that way. Masturbation isn't even possible. I could go on, but I think you get the picture. 

Yes, I have my cats. I love them. But I will not live for them. They will be taken care of. I will not live for anybody else. I know it will be unbearably hard on my parents, brother, and other people who love me. But I know they will eventually realize that it's the best decision for me to end this hell I've been living in for far, far too long. 

Anyway, it's a year away. It can't come fast enough for me. 

Single Men

I got my first computer with Internet in 1996. I had left my job at the Irish Rovers Free House (for "moral reasons", more on my adventures there another day) and not taking a vacation day during my (almost three) years there, gave me a nice lump sum cheque. Which I used to purchase my first real computer. 

I remember setting it up in the corner of my bedroom and plugging in the dial-up modem. I set up an email address, and I'm pretty sure I was set up in Windows 95. I used my Netscape (!!) internet browser to get to whatever search engine was used the most at the time (Google didn't even exist yet!) I looked at that little search box. I could type ANYTHING in there, and find information about it?!?! The idea was overwhelming. 

Kids today, seriously. You have no idea. 

I typed in SINGLE MEN and hit Enter. Why not?

A ton of links came up. The first one was American Singles. I clicked on it. 

So many profiles! Wow! I don't even remember how online dating profiles worked back then. I think it was free to post a profile, but you had to pay to message anyone. But it was free to receive a message. Or it may have even been free for women, period. All I remember is that I didn't send any messages, but on a whim I decided to create a profile and see what happened. 

I swear it was within minutes that I was receiving emails! Mostly from men in foreign countries like Egypt and Turkey. Declaring their love for me. Sending me pictures. It was crazy! It was also a lot of fun. I didn't engage with any of these men, declaring their love for me based on an Internet profile with no picture was a bit much.

One email was from a guy in Russia. He had attached a sound file, and his email actually sounded like he was a decent guy. Ah, first time interneters, we knew nothing. The sound file was of him introducing himself, and hoping we could stay in touch. He probably edited my name in there, as it sounded personal. He said he worked in computer animation, and really wanted to get out of Russia. It sounded awful... He went into a lot of detail about his horrible life there. 

I decided to email him back. Over the course of maybe one or two days, we corresponded a few times. And now he decided he loved me, and sent another sound file. THIS one was a marriage proposal. THIS one was generic, and he didn't even say my name. THIS one was probably sent to all the different women he was corresponding with in North Anerica, hoping for a bite. He never heard from ME again! I wonder how that worked out for him, if he ever got out of Russia? 

I think I did keep my profile up there for a long time, even though the craziness slowed down. I eventually put a photo in my profile, a good one, of course. I went for coffee with one man I met on there. We didn't talk long, it was more of a "you're in Čalgary? I'm in Calgary! Let's meet...." it didn't amount to anything, and I never talked to him again. Not that I was interested, but I'm sure the fact I had been diagnosed with MS and by then was using a cane (it must have been 1998) wasn't a huge turn on...

What?! It's not like anyone is reading.

I was telling my caregiver this story the other night, and it got me thinking - I REALLY need to jot these down. I've had an amazing life and I need to put this stuff in writing! Bits and pieces. One day I may put them in order.

The date is December 27, 1986. Paula and I have put train tickets to Long Beach, California on our first department store credit cards (as explained in my "Toronto, Part One" entry) and we would arrive in time to see Glass Tiger opening for Journey on New Year's Eve. 

We left Toronto in the early morning (me from the Covenant House shelter I'd been staying at, but since I was leaving before program completion, I couldn't go back for 30 days so at this moment I had no address). I had $100 cash on me because my parents sent me a money order for Christmas, and since banks are closed Dec. 25 and 26, I could only use my bank card to deposit it and get $100 cash back. Canadian. Which is an important fact later in the story. 

We got on our train that would take us to Chicago. Nothing worth mentioning happened during that 10 hours. We disembarked in Chicago, where my Canadian money meant NOTHING. I couldn't even sneak in a Canadian coin when trying to buy a drink! Paula had to cover me for everything. 

We had a 22 hour stopover in Chicago. As much as I wanted to see the Sears tower and Oprah, we were under the impression that if we went outside we'd be shot. Hehe. So we stayed within the confines of the train station. We had no money, anyway. We slept in the station - which was not easy. We tried to get comfortable on the hard wooden benches, with our coats and purses wrapped around us to ward off thieves. But we were woken up by security every half hour anyway, to show proof that we were, indeed, awaiting a train and not just looking for shelter. 

We boarded the Amtrack train the following afternoon and found our Coach seats, which were to be our home for the next two days. We walked around the train to see the different cars, but spent most of our time in the Lounge car where we got to know Bob, the bartender. He served us our Doritos and hot dogs which were all we could afford over those days, Paula was still paying, and his bar was home to the free potato chips we ate during Happy Hour. 

I think we were the only Canadians on the train, so I do remember we represented all Canadian women during that two days. Sorry! One gentlemen sitting near us took a shining to our unshowered smelly selves, and while talking to him I believe we promised him we'd do our best to get him on Glass Tiger's guest list, and he suggested he take us out for dinner when we arrived. I don't even know where he lived, but my guess is he drove quite a ways to pick us up at our motel in Long Beach. But I digress. 

We arrived at the train station in Los Angeles. It must be close to mini-Mexico, as we wandered around there and bought some 25 cent jewelry from a street vendor. We went to a Bank of America so I could finally get my $100 Canadian switched to American dollars. What a hassle! I thought I could just get my currency exchanged at any teller's counter. NO. I saw several teller's and at least one manager, all who asked me if I had an account there. I kept telling them NO! THIS IS THE BANK OF AMERICA. I AM CANADIAN! I don't know how long it took and how many people I saw, but I finally walked out of there with 65 American dollars. Woo hoo! California, here I come. 

I think it was $6 or $8 to catch a bus out to Long Beach. We then had to find a place to stay. I think someone along the way mentioned the City Centre Motel was affordable. So in our winter coats and boots we left wearing in Canada, we wandered down the streets in 80* California weather to find our motel. It was strange to see Christmas lights and decorations being up when it was so sunny and warm!

We got our room - $45 per night. It was now December 30 and we were heading back on the train New Year's Day, so I paid for one night, and Paula for one. I remember needing to fill out a form that required your home address - that's when it hit me that I didn't actually have one! There was a small fridge in the room and a Safeway across the street, so we filled it with cheap food. We took showers and freshened up. We called Glass Tiger, who were in San Francisco that night and told us to go to Will Call to get our tickets on NYE. We didn't even ask about that guy; we knew he wasn't coming. We were just using him for dinner!

So, he picked us up for dinner. We cleaned up real nice, so he was pleasantly surprised. He got to spend the evening with two young, cute blondes in sundresses, so who cares about concert tickets? We told him we tried, blah blah blah. He took us for pizza, and we went back to our room without him and full tummies. We checked out our TV, and watched MTV for the first time!

The next day we found a dollar type store and bought some silly gifts for Glass Tiger. Or maybe just Paula did, I can't imagine I had much money left. We were so excited, we had all these visions in our head of spending the evening with Glass Tiger and ringing in the new year with them. HA

We found our way to the arena where they were playing. Security searched through our bags and took Paula's Aqua Net hairspray bottle hahaha! We found Willl Call and got our tickets and backstage passes for after their show. We found our seats, and watched "Concrete Blonde" go on first, followed by Glass Tiger's set. After they played we went backstage. Which, if you've ever been backstage at a hockey type arena for an opening act, is nothing to write home about. I remember standing near a gate and the members of Journey squeezing past me to the stage. I figure Randy Jackson was one of them... So maybe I nodded at Randy Jackson? Claim to fame. 

I got this photo back there, of me and Wayne Parker, bass player and my favourite member of Glass Tiger:

The band had to leave right away to drive to the next city for their next show. Oh. That wasn't the NYE we were expecting! So we said our goodbyes and headed back to our hotel. It was about 11:00 at night. 

In our room, we settled in to watch some MTV and giggle about the boys, their reaction, my disappointment at Wayne taking the hand of a girl and casually introducing her as his girlfriend... Stuff like that. I still can't believe we took this trip to spend, maybe, an hour with Glass Tiger. But I've got this story. 

So the clock strikes midnight, and we go out on the balcony of our motel that overlooks the courtyard/pool area and all the other motel rooms. A few people were out there, hootin' and hollering and popping champagne. We went back into our room and went to bed. 

I guess some guys next door saw us. Some large, non-Caucasian gentleman would be my guess. All of a sudden they were banging on our door, window, walls. Surrounding us. Yelling "LET US IN!!" and scaring us to death. Banging, banging, banging, all around us and demanding to be let in. We were scared shitless! We stayed huddled under our covers shaking, and tried calling the front desk. Endless ringing, no answer. We called 9-1-1. They didn't seem to care too much considering it was NYE and they were kinda busy. I don't know if they ever sent a car around, but about 2 hours later (it seemed like so much longer)  they stopped the banging and yelling. Maybe they just gave up because we were NOT responding. We just prayed they weren't able to break the window or knock down the door, because it sure felt like they would at any second. SCARY. 

The next morning we packed up and checked out. We told the guy at the front desk about our evening, and how there was no answer down there all night. He seemed surprised, but also like he couldn't care less. 

At some point over that two days someone told us there was a regular bus we could catch that would take us right to the Los Angeles train station. So while Paula wandered to a pay phone to find out where we could catch it, I sat on a bench with our luggage and waited (did I mention Paula brought two HUGE suitcases? She hadn't decided on her NYE outfit before we left so she just brought most of her wardrobe). A man in the ugliest colour of green Porche drove up and stopped near me. He came over. "Do you need a ride somewhere?" 

"No, that's fine, my friend is making a call and then we'll be on our way"

"Your friend? What friend?"

I pointed down the sidewalk where Paula was on the phone. 

"Where are you going?"

"Home"

"I can give you a ride". 

"It's pretty far". (I'm seriously thinking, if you have the money for a Porche, why would you get that colour of green?!? I wouldn't be caught dead in that). 

"I'll drive you". 

"It's in Canada". 

"I'll still drive you". 

Paula came back. "We're all set then? Good, let's go. Thank you". I nodded to the man and we scurried away. Ew. 

We took a regular city bus to the train station, found our seats and settled in for another couple days in Coach seating (it was Jan. 1st and we arrived back in Toronto Jan. 4th. Yippee!) Soon a familiar voice came over the loudspeaker: "this is Bob coming to you from the Lounge car, where our coffee's so fresh you need to slap it three times!" Bob! Our bartender buddy was working for our trip back, too. Awesome. 

We also made friends with a couple guys who were musicians sitting near us. SURPRISE. I remember a group of at least 10 of us heading down to the luggage car and sitting on the floor amongst the suitcases, singing songs. A couple guys had their guitars. It was like our own campfire without the woods. Or the fire. 

When we weren't down there, we were sitting at the bar chatting with Bob and eating chips and hot dogs. Two days went by, and we were back in Chicago for our 22 hour stopover. Once we got our luggage together, Paula went to find a pay phone while I sat against a wall, guarding our suitcases as usual. She was going to call the Mission because there was NO WAY we were spending another night in that train station. 

I was approached by a dark-haired man in a long black coat. "So, you need a place to stay?" Ummm... Total stranger alert! "No, I'm fine". 

"Oh, well, your friend over there (pointing to Paula on the pay phone) says you do". 

OMG Paula told a complete stranger we need a place to stay?!? I gave her Devil Eyes that I hoped she felt burning in her back. "No, we don't". 

Paula came back and said "the Mission says they'll take us". The guy said "two white girls won't last five minutes at the Mission. I talked to my mom and she says it's fine if you come back with me". 

At this point, his coat opened to reveal an Amtrack pin on his collar. Well, it was a good sign that he worked for Amtrack, they all seemed like good people. But it was Bob's endorsement, as he came over to say goodbye to us, that sealed the deal. "Derek? Oh, he's a good guy, we've worked together for years". So, it was decided. We would go with Derek to his mom's house. I was picturing chocolate chip cookies and hot chocolate. 

We got into his car, and started driving through Chicago on this dreary night. Wherever we were going, seemed a pretty poor and run down part of the city. I mean, really run down. He stopped at a boarded up storefront and we followed him inside, speechless. I think we were both scared. It was dark inside, but it appeared to be an old art supply store or gallery, with ripped canvasses on the floor and broken ceramic peices. "He's brought us here to kill us", I thought. We wandered into a back room and Derek knocked on a door. It was opened by a psychic gypsy looking woman, with long curly hair, lots of overdone makeup, long nails, big jewelry, big mumu. "Hello Derek! And you must be the two ladies he told me about! Come in, come in!"

In the back of that store was an apartment where I guess she lived with her 10 dogs and 20 cats, and Derek stayed when in town. Chicago was the central hub so most Amtrack employees lived there. Anyway, we settled in the living room while Derek ran out to get pizza and cigarettes. We all smoked back then. 

I don't remember much of the night, just that the house was very messy and cluttered, you had to move an animal to get anywhere, and we slept on what was a double bed under a pile of stuff. Oh, and there was no hot water. But, they fed us, bought us smokes, let us sleep there and in the morning Derek would drive us back to the train station as he was going back to work. They were lovely. 

The next morning we arrived at the station and boarded our train at whatever time we were supposed to. I know we arrived in Toronto late at night, because Paula had made arrangements with this crazy lady named Nancy for us to sleep on her floor, so Paula didn't have to wake anyone up at the home she was living in (live in nanny). I, of course, was officially homeless. I couldn't live back at Covenent House for 30 days as per their rule mentioned earlier, so I had nowhere to go. But I found a place to stay. More on that another time!

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!