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Sunday, January 12, 2014

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!


Friday, January 3, 2014

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". 

Wednesday, January 1, 2014

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!