Path to ODSP 6

 Ok.. So up until I was on C3, I was on Ontario Works to pay the bills.. Or attempt to anyway.. Once I was being moved to C3, the Social Worker and I decided that getting onto ODSP might be the smarter move for me. 

So we applied before I moved to C3, and was approved. Since I was living in the hospital, I didn't get the shelter amount but that's neither here nor there.  I honestly thought it was going to the hospital anyway, so I wouldn't miss it. 

So for those who are unaware, the ward I was moving into, C3, was for long-term stays. People waiting to get into Long Term Care or Nursing Homes, people like me who were trying to get into assisted living places, and those who don't fit in anywhere else. There was a lot of dementia on the floor.

For someone who has all their mental faculties it was a hard transition. I felt completely out of place but I also knew that it was the best thing for me until I got to a better housing situation. There were some incredible nurses on the floor. Some of them became good friends. I had some good roommates.. I had some bad roommates. We had food/drink scavengers, wanderers, and people so far out of their mind confused they had no clue what day it was nevermind where they were. 

In order to keep myself relatively sane, I was able to get my baseball cards brought to me in the hospital and keep them in the activity room. The Recreational Therapist was also incredible. I ended up helping her out while I was in the hospital, for socialization and for getting away from the crazy on the floor. 

Now I mentioned a few things that went on already.. The first night I was on the floor, we had a scavenger come into our room three times to drink whatever fluid we had leftover. I had dementia patients try to kick me out of my own room.. I had one that was a little too.... Friendly.... Had another wanderer who was rather hot-headed repeatedly slam the door to my room and try to slam the sliding door for the bathroom... While I was in there.. Then there were the yellers.. Ohhh the yellers... 

I ended up starting to nickname some of the other patients.. We had a person that sounded like a goat when they yelled.. So they were the Goat. Aggressive door slammer also liked swearing, so he was Swear Bear.. Another liked bellowing "HELLOOOOOOOOOOOOO" repeatedly all day.. So he became Foghorn. 

I think the worst part was being in isolation for COVID contact for a month straight. Two stretches of 10 days for contact with a positive case, the third because I tested positive.  During that time, I had a roommate that ended up passing. That was difficult for me to deal with because while I didn't know the person, who wants to be 10 feet from someone when they die? The fact the nurses were just going about their business to prep the body made things worse. I couldn't leave because of isolation.. 

I spent Christmas and my Birthday in the ward. Christmas was nice because I got some things I needed like shirts, underwear, gloves, and some other things. 

The most stressful time was the prep for moving when I finally found out I was moving to where I currently live. Having to organize a moving van from my old place to my new place, needing them to pack my crap up.. Changing contact information and ensuring ODSP knew. Getting other ducks in a row, plus figuring out just what the Hell I needed for the new place. Between the Hospital staff donating things and Century Transportation staff, I had a fair bit of the things I needed covered. 

The next post will be about the move and up to current day..

Path to ODSP 5

 So I was back in the hospital. My body was weakened again to the point where I couldn't stand. I returned to B4 and got into getting myself in a better place. Because the damage this time around wasn't as bad, I was able to work on standing up almost right away. They would use the standing harness on me and I would pull myself up using the rails of the bed. Within a week I was pulling myself up without the help of the harness..

Next was walking. Now.. The first time I was in the hospital I didn't get to the point of trying to walk until I was on B2.This time around, I was able to eventually walk from my room to the nurses station and around it. 

By this point, I had been given two different beds. The first one wasn't that great. It was a bariatric bed, but the air bladder or whatever didn't like staying  inflated, meaning I would sink into the bed and I felt like an action figure in packaging.. The second bed I had was better..

When I went to B2 for the second time, I was in better shape than I was the first time. The counselor for the unit drafted a contract for me this time around. I would be in rehab for four weeks then I would either go back to the place I was living, or agree to look into alternate arrangements, including the possibility of Long Term Care.

Really, there was no way to make the old place I lived work out. They talked about having my bedroom moved to the main floor, taking up the computer area and getting the toilet on the main floor fixed. It still meant I was in no shape to take showers. I still wouldn't be able to enter or exit the tub.. So we agreed that it would be better for alternate arrangements. 

While waiting on these alternate arrangements, it meant I was going to be living in the hospital. Meaning, I would be spending time on a different floor... C3...

We'll get into that next time...

Path To ODSP 4

 Well, as I mentioned last post I was having panic attacks when I went to the bathroom.

It wasn't until afterward that I was able to articulate why. I was worried about fecal matter getting into the gaping hole in my ass and infecting the wound, making me go septic again. I had a nurse tell me outright they didn't buy my panic attack. This same nurse previously told me that had I not gone into the hospital when I did, I likely wouldn't be here writing these posts now. 

Because I was still trying to regain my strength, there were some things I had difficulty doing. There were times I had trouble getting into bed. I would swing my legs up but sometimes they wouldn't go all the way up. Sometimes I'd get caught on the edge of the bed or slide. Well, one time I was trying to get back into bed after going to the bathroom and I had a nurse staring at me arms folded while I was three quarters off the bed because I slid when I tried to swing up into the bed.. I asked for help and got the Great Refrain.. "What would you do at home?" (Spoiler alert: When I was weak enough to not be able to get into bed at home, I laid down width-wise on my bed with my legs hanging off the bed) 

It's one thing to promote independence, but it has to be done safely. If it's obvious the person is struggling, then maybe they're either not ready to be discharged or get off the horse and help???

Another issue I ended up having was with gathering my stuff to go home. As I mentioned, I was still weaker than normal. Bending over was a difficult endeavour. I was somehow able to gather and pack everything. I did have issues with getting into the van I was taking home and into the house when I did the in-home assessments.. 

The first time we went to see about the suitability of my old home, I couldn't get up the stairs for the deck. The second time we got me inside the main floor.. The third time I went up and down the stairs.. I was tired but the adrenaline was going so it didn't affect me too much until I actually moved back and had to do those stairs daily.. At that point, I was wearing out quickly. I would go down and back up and I would sleep for a couple hours afterward. 

I had homecare coming in daily to help with bathing and light housekeeping. Within a week they were trying to cut down to once a week.. As time went on it became more obvious to pretty well everyone aside from the pencil pusher on the other end of the phone I still needed a lot of support, more than was capable of being offered. 

It was also in this time that I started having my right side start weeping.. My torso started weeping and got really hard and swollen. I also became more incontinent again. I also had some issues with being very winded and so short of breath that walking to the bathroom 5 feet away took my breath away.. I stubbed my toe once and the cut caused so much bleeding the PSW that was there said it looked like a scene from Carrie. 

The nurse that was coming in to check my legs came one day and saw me laying weird on my bed. I explained what was going on and they asked if I wanted an ambulance. I said yes. They stayed until the ambulance showed up. It was rather fun trying to get from the top floor of an old house with a staircase that bends at the end out the door when you have no balance and barely the strength to stand.. 

They strapped me to a backboard and made some rigging to lower me down the stairs slowly.. We got me outside the house and I couldn't stand to reposition myself on the stretcher.. Instead what I ended up having to do was get help putting my legs up and adjusting while laying down. 

This time around, not even a month after discharge, I was back in the hospital with cellulitis in my torso and an INR (I'm on Warfarin) of 4.8. My acceptable range is 1.8-3.2..

Next time I'll talk about my return to B4 and B2..

Path to ODSP Part 3

 Now we're into part three of the journey I took to my current situation

I was being moved from B4 to B2. One rehab floor to another. B2 is more aggressive and "prep for home" mode than B4 was. Considering I hadn't taken a step yet and was unable to get into and out of bed without help of a lift, I was not feeling I was ready for the move to the more aggressive floor. 

I was moved regardless..

The physiotherapists tried to get me to stand up by using the harness lift, but the issue was the way we were trying it. They were going to get me up directly from the side of the bed with it. When I sat up on the side of the bed, I was too far from the mechanical lift. When they tried using it, My right side went up and I would have basically been horizontal.. Instead, they used the bed to lift me up to a standing position until I was able to do it on my own.. 

I was also dealing with severe muscle tightness in my legs, specifically my right. It was to the point where I had to stand for a few seconds, sit down, and stand again in order to move. It was also around this time they decided that it would be a good time to have me start working on using the commode. 

For those keeping score. I could barely move. It took two people to get me out of my bed to help me stand.. And they were wanting me to use the commode when I needed the bathroom. It was difficult. The Physiotherapist and Occupational Therapist on the floor were always pushing me, wanting me to get better. I appreciated their cheerleading and their motivation, but there were days when my body just would  not cooperate. 

It was also on this floor that I had a Vac machine attached to me to help with my backside wound. It took three separate tries for them to be able to make it work successfully, but it worked. Well, when it wanted to. The machine was very picky. Because of where the wound was (right beside my crack) a seal was difficult to get and keep. 

Anywhere I went I had this machine attached to me. It got very annoying, but at least I wasn't getting 13 feet of iodine soaked gauze stuffed in my ass anymore. Toileting, however, was an issue. 

This may be Too Much Information for some people, but keep in mind, this is what I dealt with and part of what brought me to where I am now. 

I would go to the bathroom. Depending, I would have the Vac beep at me for blockage or whatever else. I was still feeling weak, not having my full strength back to be able to stand and do simple things like wipe myself fully. Coupled with the fact that I had a film on my wound called Tegaderm, and with the placement of the wound again being right beside my crack, the Tegaderm would cover part of my crack. I would go to wipe and I'd hit Tegaderm. I couldn't tell if I was getting myself fully clean.. I didn't feel like I was getting fully clean. I was in the hospital due to septic shock in the first place. I had a couple times where the nurses thought I went septic again.. I was not willing to take a chance of fecal matter getting into a gaping wound... So naturally, I would get panic attacks when I needed to go to the bathroom. 

Now.. I will say this again. All the nurses at the PRHC are awesome. Going through the pandemic and other bullshit they do on a daily basis they don't get the credit they deserve. However, the ones I had on B2 could have used empathy training. 

See, B2 was the rehab floor to "get you prepared for home" however... Home wouldn't have me sitting in a large boxed room going to the bathroom. My bathroom at the time was a cramped little space where a water pipe was against my leg and the shower frame was right across from me for help to get up. Home would also mean I wouldn't have Tegaderm covering half of my ass. Their great refrain was always "What are you going to do when you get home?" Finally I said to one "Hopefully, when I go home I won't have Tegaderm covering half of my ass" their reply was to sigh and huff "Fine.. I'll wipe."

I had another nurse tell me they didn't buy the fact I was having a panic attack.. 

In there I did have a spot where I went into Atrial Fibrillation and was moved to A4, where they deal with cardiac patients. The room I was in there was weirdly shaped. Kind of like the L piece in Tetris. The bathroom was in the long part of the "L" The sink was in the short part.. The bed went parallel to the short wall of the "L" I had a vac and an IV in me. I had a heart monitor on me.. And the nurses were confused as to why I wasn't trying to use the commode.. I was so wrapped up in wires that went everywhere but somewhere that made sense that I didn't even want to move for fear of something being knocked out of place. 

After a week in A4 I was moved back to B2. This was where the panic attacks for the bathroom set in mostly.. I was here until the end of June, 2021 When I was discharged. 

The fun that was leading up to the discharge and what followed will be next time..

Path to ODSP Part 2

 Today I'll continue my journey.

So I was in Intensive Care. They soon talked about moving me to one of the rehab floors. I didn't feel ready for that. But they insisted. So I was moved to another floor. My first room had a mechanical lift I didn't feel comfortable or safe in. They wanted me to sit in a wheelchair but I was in no shape to do so. My legs were still pins and needles, I barely ate, and my head was lolling all over the place. I was ready to go back to bed after 20 minutes. I was in the chair for two hours. 

After a few days I was moved to a different room with a better mechanical lift.  It was here I met one of the nicest people. She was the custodian for my room. We would talk, sometimes about how I was doing, sometimes about what I did before I was in the hospital. There were some nurses that were amazing on that floor as well. 

Physio was tough. my red blood cell count was low, which caused me to feel light headed when I sat up. Almost every time I sat in the wheelchair they had for me I was either feeling like I was going to pass out, or I was in pain because I ended up having a pressure ulcer on my backside. 

My body was getting less stiff and sore as time went on, but I needed to re-learn how to walk. I needed to be able to stand.. The physio guys were awesome. There were more than a few days I was cursing their names.. They stuck with me. I needed to be lifted out of the bed and into the chair. Just before they moved me down to a different rehab floor, I was just starting to be able to stand up with the help of another harness. 

While I was on this floor, I had the ulcer looked at on my backside. They ended up having to clear it out. It was a rather large area. And deep... I joked I had the Grand Canyon on my ass. In order to help it heal, I was packed with iodine soaked gauze twice a day. I will say it hurt. 

I'll end it here and continue next post. 

My Path to ODSP

I'm on ODSP, which is Ontario Disability Support Program. It's designed to assist those who have physical limitations to receive income. Unfortunately, it's not nearly enough to survive on, never mind live. 

People on Disability and other income support programs are the poorest of the poor with no hope of getting out. Yes, if you're on welfare and capable of working, you get assistance looking for a job. You can even get help with programs like Second Career to train for a new career path. Disability allows those who can work to work, however, those who are on ODSP and unable to work are left behind. Same with seniors who rely on their government run pension to survive. 

Two years ago I took a leave from my job working as a bus driver due to Cellulitis that refused to get better. By January I had a leg that was draining heavily, parts of my toes were getting a black crust on them. At the same time I was dealing with stretches of not eating and not going to the bathroom. 

I finally went to the hospital when I couldn't move because I was so sore and so weak. 

As I laid on the stretcher in the Ambulance garage in the emergency department while being swarmed by nurses and a doctor, I had IVs put in both arms, them checking vital signs, and other assessments. I heard the doctor say "Septic shock due to cellulitis, acute renal failure. Possible necrotizing fascitis. If it is, we may need to amputate." They cut into my leg in two spots to test for it (it was negative) and found my intestinal bleed later. The only pain I felt was them trying to put a catheter in.. 

They brought me into the emergency room and I remember nothing until I was being wheeled to Intensive Care. They originally thought I could be in and out.. Then they found the extent of the damage.. 

In Intensive Care, I was in pain all the time. My whole body ached. My legs felt like they were being stabbed by porcupines. I was on a morphine drip for a few days. I needed dialysis. I am lucky enough to say my kidney function returned, so dialysis wasn't permanent. I did not have necrotizing fascitis in my leg. I couldn't eat because my mouth was bumpy and had black spots in it. To be changed, I needed four nurses to roll me in the bed. Two to push, two to pull because I had no strength to do it or to help. 

I'll break it off here, the next part will be up soon.  

I'm Tired.....

 I'm tired.. 

Tired of feeling like I'm worthless. Feeling like I'm not good enough. Feeling like I deserve all the shit I deal with on a daily basis. Feeling like I deserve the spot in life where I can't afford the basic fucking necessities to live. 

I'm still recovering both physically and mentally from a near death experience due to illness. I'm physically unable to return to my previous job that I really loved. I worry about looking for a new job, because of my current limitations. I can't stand for hours on end like I used to. I can't walk fast or run if need be. Some days I need my walker. Some days I may need my wheelchair. I still deal with the possibility of infections in my legs. This will be a condition I'll deal with likely for the rest of my life. I worry about going into a job interview, them seeing my walker/chair and immediately deciding against hiring me. 

I'm tired of needing to beg and borrow money from friends just to survive the month. Services like food banks aren't accessible to people with mobility issues here in Peterborough. In order for me to actually be able to use the services, I'd need someone to go for me. That is one of the many supports I need that fall out of the range of the PSWs in the building I live in. 

We're coming up to winter. I need a new winter coat because my old one is gone. I don't know where it is. Even if I did know where it is, the zipper has been broken on it for three years now. I'm not even sure if my foot will fit my boots. 

I'm tired of worrying so much about how I'm going to feed/clothe/keep myself with basic needs that I can't do anything fun for myself. I'm tired of feeling like a failure. I'm tired of feeling like I'm forgotten. I'm tired of worrying about if my friends think I'm only contacting them when I need something. 

I'm tired of the bullshit going on in the world. I'm tired of being lonely. I'm tired of being stuck. I'm to the point that I'm beginning to wonder if I'm such a horrible person nobody wants to be around me. I'm beginning to wonder if that's why I'm always the one reaching out to friends, rather than them being busy. They just don't want to deal with me.. 

I'm just tired... Tired of living the way I am. Because this sure as fuck isn't living...