My Thoughts and musings.
Post about my battle with Guillain-Barré syndrome.
For the past week, I have had this pain in my foot a shooting pain in my heel that was really strange. I was fearing some of my old symptoms were returning. I can’t really feel the bottoms of most of my feet just a tingly sensation in some toes. As it turned out there was a roofing nail embedded in my right shoe on the bottom, extending to the heal where the pain was coming from.
Planning for this trip started months ago, it was planned as the best available excuse to visit Brampton Civic Hospital to determine what was real and what was not. I had already sacrificed a day from this mini-vacation for my day visiting the Anthem of the Seas and had Friday to Tuesday for a road trip to Brampton. “Coincidence” (with air quotes) would prevail that it was also during Kitchener-Waterloo Oktoberfest. As the weekend approached, I was starting to have second thoughts about this trip and a feeling that it was not the most financially planned decision to make. It was literally the Friday morning that I was going to go. The plan was Montreal on Friday, Brampton/Kitchener on Saturday, Niagara Falls on Sunday, back to Kitchener on Monday for the parade and then drive home. As I was leaving Saint John and just passing Spruce Lake. Out of nowhere, a sheet of drywall flew in the air just metres in front of me and luckily there was none beside me and I switched lanes to avoid disaster. As soon as that happened, I had this dreadful feeling that this trip was a mistake. I continued on anyway. I crossed…
It has been a while since I have done any writing and there was no real good reason other that I wasn’t myself on the pills. The tale started shortly after I had gotten out of the hospital. I was really hoping on a more abridged and unrealistic timeline for my recovery. I was in the City Market when I got the initial call for the referral, I had an appointment for my EMG so I procrastinated starting. Then as I got closer to the start of Physio the first roadblock came up. I was booked for the wrong type of physiotherapist. I needed a Neuro one. Then the one I had been rebooked to left. I received a call that perhaps St. Joseph’s hospital had a shorter list. Once again it was the wrong type at first, but that was resolved early. As we started, she gave me a few exercises as we met a few times I week and I was starting to see results and was really happy. During these sessions, my mobility improved and I could start raising my right arm over my head again. In the middle of these sessions, I finally had my hand…
Back in June, I was in a position that I was struggling with motivation to do anything. There was constant nervousness about falling and not able to get up on my own and I was doing very little. After talking with my doctor, based on online research, I read that it was a common side-effect of Gabapentin. A common reoccurring solution was to also take a mild dose of Sertraline. Once I started taking the Sertraline, things improved a lot. I started doing more and focusing on my exercises. I also stopped crying myself to sleep every night. Now fast forward to early this year, I was taken off the Gabapentin. It was causing weight gain and as I learned, most of the remaining pain was a side-effect of it. Which left me with just the Sertraline. As I soul searched it really wasn’t making me feel any less lonely, or even helping with dating. In fact, it made me less motivated to go out and meet people. I went to a dance for a friend, but couldn’t bring myself to go in. My friend was having a special night and the Arcade Bar, and I struggled with motivations to…
To say that I would never watch a gymnastics movie, while that. Is simply not true. I loved the movie “Stick It” and must have seen that movie dozens of times. The movie I just saw was “Full Out”. This is based on the true story of Ariana Berlin. Early on in the movie, she gets into a car accident with her mother. After a period in a coma and severe injuries, she is faced with not initially walking and is in the hospital dealing with physiotherapy. Having her whole dreams taken away and her meaning in life. She initially struggles to find meaning in life and where her new life will take her. This road leads to hip-hop dancing and eventually back to gymnastics with a warm and fuzzy ending. Given what I have been through I can really relate to her struggles. Even before this I never really had big goals and was waiting for inspiration. Now I feel like I need to do something and want to find that something but many possibilities a beyond large rolling Austrian Alps, but a big rocky Swiss Alps now. This movie is available on Netflix and worth a watch.
This summer I volunteered with the Fundy Fringe Festival again. Giving my physical limitations I was really worried if I could actually do it. It has been the highlight of my summers for the past several years and I really didn’t want to miss out. This story begins with the gathering on May 20th. At this point, I had just started to go back to work and was trying to get my life back to normal. I really wanted to go to this event as a way to get out and try to be a bit social. It was a great night and I had so much fun even if it was a struggle to get there. I then filled out the volunteer application and was a bit unsure what I would be able to do so I applied for Captain again, and venue tech, and bartender, and I think HUB volunteer. I then didn’t hear much of anything until shortly before the festival, on NB Day. I was on a road-trip of the province and while as I was waiting in the line for the Magnetic Hill attraction, I had seen the post that the first orientation was at 7…
As it was becoming clear that I needed to get motivated to go to work. It was also clear that getting up to catch a bus was not really physically possible given my state. I was going to need a car. I had set in my mind from two years earlier that I wanted a Mazda 3. That was going to be my car, but I wanted to test drive others first. Since I was not convinced of my abilities I wanted to take the first round to sit in the cars and then shortlist a few to test drive. The car buying experience if not the most friendly for those that don’t know exactly what you want. The experience typically goes like this. You enter the dealership, you get greeted by the fastest moving sales guy. Then you blow at least a half hour as he gets your information, then starts suggesting features, and financing options before you even look at a car. Then you only get to look at what the sales guy wants you to look at. Then you realize the car is missing some of your must-haves, then the blow off that the must-have is not…
On my way out of the hospital I was so hurried to get out of there I got my prescription list and that was it. I was gone just after lunch. I probably should have asked questions about the follow-up but didn’t. When I got home I spent a lot of time watching TV and occasionally taking the bus to town. Having to sit on several cushions was getting to be uncomfortable so I bought a new recliner chair from Wayfair. When the chair arrived I loved it and it made watching tv more comfortable. I did eventually get a call from the doctor for a follow-up EMG. It went as well as poking a needle and giving an electric shock can get. I also received a referral to a plastic surgeon to see if he could fix the Ulnar nerve. Later the next week I had that appointment and an MRI to see what happened to my shoulder. After another month of doing nothing and clearing out the PVR. I was so bored that I made an appointment with my family doctor and got his permission to go back to work. So 2 days shy of 8 months later…
After the Christmas party, I was pumped and the goal wasn’t to just walk but to get out. The next weekend I went to a movie with a friend. The main goal that I needed to go home was to go up my front steps and to transfer onto a shower bench. After lots of practice, I was managing a few steps of various height with the hospital physiotherapist. The next step was going home for a home visit to see what was needed for me to go home. When I arrived at the house that I hadn’t seen for months, it felt familiar but didn’t seem like home. I couldn’t even see half of it. Waking up the steps into my house was the hard part. My rails were too low to give support. When I got into the house, I tried sitting on my couch and it was still too low to get up from without help. I also needed a walker still to get around. The walker also didn’t fit well through doors. That night my sister brought me to the Dolan Rd Irving and then went back to the hospital. The next weekend was my trial…
On the spur of the moment I came up with a wild goal of getting to my work Christmas party on January 21st. I then told my Physio and OT that this was going to be my goal right after the Christmas holiday. Step 1: The Car Transfer Up to this point , I was barely able to slide on a varnished board but I gave it my everything to be able to do that. However, in doing that my muscles started to build more rapidly and I was moving on to being able to stand using a two-wheel walker, and walking a little with it with a physiotherapist. We had arranged an afternoon with my step-father that had a higher vehicle to get into to try with Physio to get the okay to go. The day I picked turned out to be a quite warm day for January and in one try I was able to get in and place myself in the sea. I couldn’t get my own seat belt on myself but it looked promising. Step 2: Arrange tickets My coworkers were visiting me in the hospital regularly and I got them to arrange to get me…
Back when I was in ICU, you cannot imagine what it is like to not really know what is real and what is in your head. When I first had the machines breathing for me, I felt like I was in control of them and that they were supporting me when my brain wanted air until I would lose focus on breathing and then it would kick in. Every function of one’s body has it’s own unique rhythm from heartbeat to a breath of air. At first when it kicked in the timing was wrong and it was pissing me off royally! Not as much however as the medical professionals asking is I was in pain and not being able to effectively communicate so they gave me good stuff and I would come in and out of consciousness but no one seemed to know and I blacked out again. After a while, I just gave in and let the machine breath for me. I stopped fighting it and it became less noticeable except I knew I couldn’t breathe as well as before and my air wasn’t right and I tried to just go back to sleep and get the four…
After lunch, on November 23rd I was wheeled down the hall to the next tower. I had escaped the mean nurses and now entered the rehabilitation program floor. I remember the weather was overcast or raining it was dark. This isolation room would be my final prison for the next 3 months. I had remembered being told the ESBL treatments were for a week. I was told within a few days that the isolation was to be permanent due to hospital policies. The first nurse I saw went through the riot act that made me fear that the poor treatment from the last floor was going to continue. I spent the rest of my night in the room just listening to what I could hear from the hall. The next day involved being assessed for what I was capable of. It was also more just waiting around doing nothing. Over the next few weeks, I tried really hard and progressed to sitting up and sliding on a transfer board to a wheelchair with help. It was lots of long nights and days. Typically only a little over an hour of physiotherapy and occupational therapy. I was always excited when the…
On my left hand, my Ulnar nerve had never really come back. The end of March, I had a referral to the plastic surgeon to see if he could do anything. It was pretty fast after the referral that I got the appointment to see him earlier in the following week. I accepted and met with him. I really wasn’t sure what to expect. He had me attempt a couple of movements and explained the surgery that he wanted to try. After the meeting, I had to fill out a long form and then just wait. I was a bit nervous waiting for the operation and never heard anything back for a few months. On the last week of June, I was at work and my phone rang and it was his office and they offered July 12th as the date, and I eagerly agreed. She explained the hospital would call and make the arrangements. The next day I had the call from the hospital and did the registration and was given the time and made an appointment for a phone pre-op screening call. On June 30th I had the call before I took off on the Canada Day quest.…
It’s now November 12th and I just got moved out of the ICU! It was a bit exciting for the change of scenery. However, it took forever to get service. I needed desperately people to talk to. I was having pain from not moving so bad in what I still couldn’t move. It was very sore where so was laying on the bed. I was also still having trauma issues mentally from trying to convince myself that this we real and not a false rabbit hole I went down in some of my hallucinations. The first night was interesting, there was an old guy in the bed next to me and he kept trying to hang himself in the rails until then moved him late at night. They eventually moved him to another room. The next day, I was once again ringing and people would not come for a half hour to an hour. I felt so helpless and sad that I survived. This was the first day I had the really mean (or over-worked) nurse that told my sister it was unrealistic that they would come to help me within a reasonable time. There was a new person placed…
I’m going to move the story along and will in the future write more hallucination stories. Once it was determined that I was going to go home, the nurse told me and I wanted to bad to leave Brampton. Mostly because I believed that the whole town wanted to kill me in the riots. I was still having lots of difficulties staying awake. I thought that so was moved onto a ship and was going to sail back to Saint John. I was stuck in a small little all-white room. We then stopped, a giant rock had collapsed the passage and this Newfie came down from the bridge and said: “She’s between not good and not so good.” I knocked over something and the ship caught on fire and sank. I was so scared I wasn’t going to make it back. Then I woke up (October 23, 2016) again and remember the nurses and air paramedic trying to switch over my breathing machine but it was the wrong size. They eventually did something but I got bored and blacked out again. I then woke up and I was outside and it was cool, they then put me on the plane…
This is another one of my memories while under good drugs in the hospital, most of it never happened but it is how I remember it happening. I was brought for the morning after cleanup to this glass office building that was being used to house patients. As the day went on the nurse was having trouble moving me for cleaning and the brought in a lift thing to try that didn’t work out. However, as I was on the lift and couldn’t move it had me down near the floor and beside the desk. Then this snake came out from the desk and this guy used a spinning rope on a stick thing to kill it but there were dozens more everywhere. The decided that I needed to get back to the main hospital so I was moved through the Indian spice store next door and they used a hose to dry and get the snake infestation out but it got too much and I got pulled under into the drain with some other dead bodies that were grossing me out. I managed to be pulled out and placed on another stretcher. This left us in a parking lot…
The following events are what I remember happening but I was on good drugs and were what my mind remembers happening only. I cannot tell what never actually happened. — After blacking in an out, there were periods where I was conscious an periods that I wasn’t. After the first night, I was put to sleep and rested well or as well as I could with the breathing machine. Initially I felt that I was kind of in control but the machine was not in time with what I was trying to breath. I learned that if I just gave in and stopped trying to breath I was getting more air. I also remember being asked constantly if I was in pain. Moving my eyes was all I had to communicate. After trying so many times to get them to stop asking they just kept on and I was getting fed up and just gave in and always said yes. This is when an Indian doctor that looked like Kumar with big white teeth smile,came and he told me “Trust me I get you good stuff.” Then I totally lost track of time and days and nights blurred together. The…
As I was in the ambulance rushing to the hospital. I noticed that it was a Peel Region paramedic so I realized I wasn’t going to Toronto and probably Mississauga and the ride seemed really long. The biggest thought on my mind at that moment was not my condition, but that I couldn’t get ahold of my friends that were meeting me, that my bag was still at the airport, and that I haven’t cleared customs. I started to notice that the turns and distance of freeways didn’t seem right for Mississauga. I asked the paramedic and he said we were headed to Brampton Civic Hospital.Once we arrived, I was rolled into the hospital an the person at the hospital pointed to one of a long hallway of hospital beds and the Paramedic had me roll over to the other bed. Then I was left in the hallway for a long time. A woman eventually arrives and I give her my insurance card and Medicare card and she admits me to the hospital. I’m not moving much at this point. After another long wait this nurse comes with a phone. The Peel Police are on the line and ask if…
This post also has a soundtrack. The André Rieu version of Arrivederci Roma. It is September 24th, as we left for the sightseeing of Rome. I was a bit worried to go out on the street. There was a long protest going down the street for the freedom and recognition of a people in a region near Georgia. (The country) The parade ended just before go time and my feet were really sore. My last pairs of socks had holes in them and combined with the bleeding heels walking was getting harder. Rome is also not known for the flattest and smoothest sidewalks/streets either. We hopped on the bus and went to the area near the Italian government buildings. For there we walked around Rome to the Pantheon, the Trevi Fountain and various other buildings. We also ran into a group of protestors that were fighting for the right of deaf people to have interpreters at churches. They made a lot of noise. Then we went for a fancy supper and my feet were killing me. At supper, I had noticed my feet were still hurting even when not standing on them, and my butt and hip were getting a…
As the story starts to get more dramatic we need to get into the mood. I have a fitting sound track for this portion. “Walk to Rialto Bridge” This is the final day September 23rd before things start to go bad. The morning is sunny. We check out of Hotel Park in Ljubljana. Since the elevator is small I walk my bag down with a lot of effort 12 stories of stairs. I’m not feeling the greatest, I drank too much the night before. (Again) After a small breakfast it is on the coach for a 2 hour drive to the meal stop where I get a better meal, then over an hour to the causeway to Venice, but we hop a boat that drops us off near Piazza de San Marco. (aka tourist trap/pigeon central) I went with a group to have lunch at a small restaurant, then ditched them. I grabbed a bottle of wine and got lost for the afternoon. I really didn’t do any of the big attractions since I’ve done most of them before, and the 3 hour line to see in San Marco was not a useful waste of time. I spent most of…