Browsing Category: Living With GBS

Post about my battle with Guillain-Barré syndrome.

The Path to Freedom

The Path to Freedom

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 overnight. I was really looking forward to it but once home reality kicked in. There was little I could do without help, and I didn’t really have much help. The worst part was at night, my bed was so uncomfortable and I couldn’t get up to go to the bathroom to even pee in the dark. Putting on the ankle brace was hard. The next day I returned to the hospital distressed that the weekend didn’t go that well.

At that point, my hospital release was extended about a month, and I had an idea of what I needed to work on. Unfortunately, being in isolation was impeding the process. It was that week that I ran into infection control checking to see if the sign was on my door while I was having my lunch. They were two very nice ladies. I made it clear to them that the isolation was impending my care and was stupid since I was researching the procedures of other hospitals in dealing with ESBL and that I was probably cured two months earlier.

Later that day, they came back and the Director decided to retest and then maybe decide what could be done. Having no choice I agreed and urinated in a cup and had a swab taken from my but. After two more tests a week apart, the results came back and I was cleared! Since I could solo walk with a walker by this point I did a victory lap.

Up to this point, I had two Physio and one OT session every weekday. The staffing became a bit short and my exercises Physio session was going to be cut. I asked if I could come to the gym and do them solo. (I was motivated at this point.) They agreed so I started doing them myself and then gradually tried doing the harder version that was on the sheet and was excited each time things got better.

Finally, after 5 months and 3 days at the hospital, I was released on March 1st.

The Return to Work

The Return to Work

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 I returned to work.

Buying My First Car

Buying My First Car

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 that important doesn’t work well anyway or, promises it can be added after-market when it really can’t. Then you find one you kind of like and they never end up telling you what it costs, only payment amounts that leave out a few key things that get added when you close the deal.

My main feature need was I didn’t want leather seats. I also needed an auto-dimming rearview mirror and automatic transmission for physical reasons.

The first stop was Saint John Hyundai, the sales rep was new and made it known that he was not on commission yet and was going to look out for me. He then showed me a Sonata, it was nice. However this is where I learned I had another physical limitation, I couldn’t have a pedal emergency brake.

Then I wanted to look at the Accent but the sales rep insisted on the Elantra first. The Elantra would have worked, but the lip by the door was too deep for my leg brace and I would have to go high-end to get the mirror I wanted. I did get to try the Accent that was more comfortable and my size but he in post talks kept pretending I didn’t and insisted the auto-dimming mirror could be added aftermarket after the company he called said it couldn’t.

The next stop was Port City Kia. This place was more friendly because I was familiar with the staff. I sat in the Forte and it was a great fit and mostly met my needs. I was thinking of a Rio when I did my research but never did sit in one. While they were figuring out numbers I sat in a few of the other ones but they were more car than I needed.

The third stop was Saint John Nissan. The staff was friendly, and the Sentra fit well, but I needed the sports model to get a colour I needed. The Micra was also nice but the saleswoman has no interest in selling it.

Stop four was Dobson Dodge Chrysler. I went in thinking maybe a Dodge Dart. However, they were having a promotion that a Chrysler representative was in town and I only got to see a Chrysler 300 that was, “the only car worth considering”. It didn’t have what I needed and was way outside my budget with other options I had seen.

Stop five was Saint John Toyota. I spent a good amount of time here as I was being shown cars. As the sales guy was distracted, I fell in love with the Toyota Corolla iM, it was blue which I really wanted. It was only missing the mirror and the sales guy insisted it could be put in once again after-market, but he could throw it in. They also started insisting that a lease was a better option as it makes it easier to replace every few years, and are taxed better.

The next day I went and visited more places.

The next stop was Fundy Honda, in this case, I tried the Civic and the Fit but none of them wouldn’t work out.

The Seventh place was Brett’s Buick GMC. None of the cars met my needs or budget and the sales guy I got had to constantly leave to work on other sales, and then got the service guy to come out that shot him down that an auto-dimming mirror couldn’t be added.

Stop eight was Downey Ford, who insisted that I would only like a car if it was white, black, or grey. They also couldn’t get anything in that was blue, even if I wanted to wait.

The ninth and last stop was King Mazda. I basically learned that my dream car didn’t meet my needs as the only one that did was the top end Mazda 3 and that was outside my budget considering my other options.

After the round of viewings, my short list was the Hyundai Elantra, Kia Forte and the Toyota Corolla iM.

At this point, I went back to all three with my friend Tony to re-sit in all 3 of the finalists and it was really then that I decided the Elantra was just not the best fit.

Later that week I went to test drive the cars, starting with the Kia Forte. They had a red one there, and I was very comfortable in it and was comfortable with the feel of the controls. After the test drive, I was confident I had found the car. However, I wanted blue, and I wanted the mid-year update with Apple CarPlay. It took a few weeks for the car to arrive and was not the easiest process to find out for sure when I was arriving but they appeared to do their best at the dealer level.

On the day the car arrived, I went to the dealership to complete the sale. It was at this point that so learned how all the fees work, and all the service and warranty add-ons and what is actually covered and what is not.

I now have my 2017 Kia Forte EX and absolutely love it and am confident that I made the right choice.

Fundy Fringe Festival #5

Fundy Fringe Festival #5

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 pm that night.

I did the Magnetic Hill drive backwards in neutral thing. Which for $6 is the biggest waste of time and money ever! Then I went to Shediac to get a pic with the giant lobster. Following that, I was headed to Boisetown to get to the centre of NB monument but ran out of time as I really wanted to get to the orientation night.

It was a good-sized crowd and more exciting of a presentation from earlier years that had gotten monotonous from reading the handbook that hasn’t changed over the years. I found out that I was selected to venue captain (again… or “Once a Captain Always a Captain!) It was also here I learned that there was going to be recorded introductions of the sponsorship and the “buy a button” speech. My heart sank a bit as that was one of my favourite parts of Venue Captaining.

After the meeting and email went out that there were still a few shifts open, I took it as an invitation to try something else than captaining so I offered to tend bar for the Big Tease night after the volunteer BBQ. As the night of the big tease came, I was still unsure with my feet always uncomfortable with long-standing periods due to the numb feeling if standing for a long time was even possible. I went to Giant Tiger and bought myself a folding bar stool and brought it with me and that worked very well. I had so much fun that night, and my beer knowledge came in very handy.

The next night was my first Captain shift at the year’s newest venue, the balcony lobby of the Imperial Theatre. When I arrived, I sorted everything out and found out there wasn’t the prerecorded opening on site that night. I was so glad that it gave me the extra motivation to blow the socks off the moderate-sized crowd there that night. I had nailed it and got a great reaction from the crowd. The show was “Denial Is a Wonderful thing”, I spent most of this show dealing with a situation so I didn’t get to hear much of the show. What I did hear was pretty good.

The second show that night had a pretty good size crowd, MIDDLEhood. After this show started, I had overextended myself a bit and needed to get off my feet. I spend most of the show in the stairwell laying on the upper landing listening to the show, while Snapchat and Instagram posting selfies. Occasionally, paying closer attention to the show like the description of a period.

The next day, I was at the BMO theatre for Crippled and Two Minds Into One. Since I had the option, I insisted on doing the pre-show announcement for these shows and again, I got the reaction I was looking for and was so worth it. After the shows, it was the Not-So-Family game night. This was a great night, I started with playing some Hungry Hippos but that got old fast and a game of Cards Against Humanity began and that was beyond fun, as more people joined in it just got better.

Thursday was my shortest day and I only had Crippled to captain. After that, I went to see some shows. The first show was I Want to Come Home. This show was beyond impressive. It was a mix of storytelling type, performance, and crowd interaction. I loved how the projector became a character in the play. After that, I stayed to see Illustrated Lady which was an ingenious version of storytelling and demonstrating how tattooing works.

On Friday, I had my last shift back at the Imperial Theatre for Escape the Ordinary and SMASHES. Both were really good. Bernard started out with a math demonstration that I was following along with seeing how this was too predictable to control the outcome, but then took it to simply, WOW!

On Saturday, I didn’t have any shifts but still had 3 passes to see shows so that is what I did. I didn’t have a lot of time to fit them in so there were so many I wanted to see but couldn’t. I saw A Century of Belly Dance and was really impressed, I didn’t go into it thinking it would be something for me but it was informative and entertaining at the same time. I then saw Two Minds Into One, like most people I love a good magic show. I can usually tell how something’s work but with the big finale I was beyond amazed. The last show I went to see because so many others people said it was a must-see for theatre fans.

I have to agree, it was great watching him show how theatre works in a one-man format, except the tech and an off-stage assistant become part of the storytelling as well, as a point that actors have to rely on the “non-talent” to make them “talent”. After this, I ran to the Imperial to see a non-Fringe show Jay and Silent Bob Get Old. This show was funny and entertaining and lasted about two hours.

After this, I went back to the BMO for the Fringe dance party. This was so much fun, a lot of the performers and Volunteers were all there. I also danced as much as I could but that wasn’t as much as I wished I could.

All in this experience was still fun, emotionally challenging, and really highlighted my limitations.

“Full Out” Review

“Full Out” Review

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.

Anti-Anxiety

Anti-Anxiety

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 go. I’ve been really tired a lot. I couldn’t even go to comedy shows that I loved.

I would make it to the parking lot and then give up. Staying in a cloud of loneliness. I haven’t been even able to write these posts. So now my prescription is over and I have stopped taking it.

Today I even waxed my car today that I lacked the motivation to do.

Physiotherapy

Physiotherapy

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 surgery and needed a few weeks to heal.

Once things resumed, my sessions not long after ended and I was given exercises to work on which I did for a while.

Around this time I also started taking the anti-anxiety pills and stopped wearing my orthotic. The aftermath of this actually helped me get more active and stronger as at first I was motivated to do more and not be limited by the pain of the AFO.

Drywall Flying Off a Trailer is Still a Sign

Drywall Flying Off a Trailer is Still a Sign

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 the boarder, with fairly little trouble and for once wasn’t searched.

I drove the airline to Bangor and stopped for lunch at Dysart’s just outside Bangor. I grabbed a sandwich, dessert, and bottle of juice. The sit down area was really busy. Since I knew that I could go just over 625km on a tank of gas, I went as far as Newport ME to fill up. It was after this fill up that you experience one of the most amazing drives. The road towards Lac Magantic that follows a river and passes the mountains with the changing leaves of fall is breathtaking. It was taking this route that I came across another broken sheet of drywall in the middle of the road.

As I passed through Sherbrooke, QC I needed to get some cash to go out that night in Montreal and while their, I had a rest stop at Tim Hortons. One of the thing I absolutely love about the Tim Hortons mobile ordering is that I no longer need to know enough French to order coffee and a donut.

As I arrived in Montreal, I shut off the GPS telling where to go. Mainly because it made no sense. I circled a whole lot of blocks and there was a parking lot but it was $30 and I thought that that was stupid crazy expensive. I eventually found a free on street spot on Rue de Bullion. Although there was a mentally disturbed person pacing the street that scared me a little so I waited for him to go down the street and I got out placed my stuff in the trunk and walked quickly to dinner.

My main goal was to get the La Belle Province for a smoked meat poutine. I have to say that it was the best poutine I had in as long as since last time I was in Montreal on my way back from Oktoberfest in 2015. As with all things nostalgia, it was disappointing from my memory of it. The meat was more fried and smaller bits than before. After dinner, I strolled the streets a bit and settled on going to Ste. Elisabeth, which is still my favourite little pub. The crowd was good and listening to other people’s conversations, or at least the few that were in English was a great evening. I spent a good two hours there before heading back to the car to find a truck stop.

As, I left Montreal I quickly ended up in Ontario. As you cost the boarder there is an excessive number of law signs, one after the other for almost 2 kilometres. I spent the night at the ONroute in Bainsville. It was a rough night and I didn’t sleep very well but I tried anyway. My plan was to get to Brampton by 1pm.

After waking up I went to go to the Irving to refuel, but ended up not finding it and went to a Petro-Canada followed by Tim’s and off to Toronto I go. Along the way I saw a sign advertising the first railway tunnel in the country in Brockville and detours to see it. It was closed so I took a photo and moved on.

Until I seen the sign for the Big Apple, and I thought it would be a cool place to get a photo in front of the sign and move on. Oh boy was I mistaken, as I drove by I saw that it was packed and thought that it was just a rural market type thing. As I got out of the car the first thing I noticed was the petting zoo and dog park. When inside the building centres around a giant glass walled bakery that was rapidly making apple and pumpkin pies. It was so cute to see the little children knocking on the glass and waiving to the cooks and the smiles as the cooks waived back. To the left there was a craft brewery and cider house that made a wide variety of tasty beverages and a gift shop the sold local goods mixed amongst the typical gift shop wares. Notable amongst the local made items was wine and hundreds of types of chewy candies.

To the right was a large bakery shop that is typical to a farmers market with more baked goods than you could possibly ever eat. In the by the slice case there were over 20 types of apple pie and tarts to choose from. Also, there was a smokehouse to get the freshest ribs, chickens and, brisket. Outside there were rides, a Beavertails mini golf, and an activities area.

After I left there I was on the road again, it was light raining and overcast. As I approached Toronto the 401 gradually split into a stupid number of lanes, and unnoticed until too late a stupid number of cars going very slow. Magically swiping lanes and the merging nightmare of going back and forth between the 401 and 401 Express. My anxiety was also at a stupid level of stressed that if I could have figured out how to change nine plus lanes I would have taken the side roads. Also it was getting close to 2pm at this point and I didn’t want to get to Brampton too late. Thus not getting to Kitchener too late.

As I first glanced the hospital, I noticed the white church that my mother talked about. The inside of the building didn’t at all look as so had imagined and seemed quite advanced at parts. Hearing the announcement voices were far mor terrifying than the 401. In my mind there would be a person at the desk that I could tell my story to and complete the quest. What I ended up with was a desk with two options, “Pod 1” or “Pod 2” and on the wall above it, was a red clock of terror.

Brampton Civic Clock
Brampton Civic Clock

I had frozen and broke down completely, I don’t like calling people, let alone to a pod that I had no idea what was the right one. I just stood there for almost 20 minutes trying to come up with what to say. Also what to say and not sound crazy. I ultimately walked out and went back out to the front doors. I was so devastated that the quest was a disaster.

As I was starting there there was a doctor giving bad news to a woman who was in reality more devastated than I was about how their loved one was progressing and had not much longer. Not because, I didn’t make it but because, I couldn’t hold myself together. As I got to the door, I pulled myself together and convinced myself that I have to go back and try.

As I get back to the phone, I pull together and dial to “Pod 1” then a voice answers and asks what I wanted. I cam up with “Hi I was here 2 years ago on my way back from Rome, and I wanted to see what the Pod I was in looked like.” They then buzzed me in and I took 5 steps and had no idea where to go, then alarms started going off around the corned and I couldn’t breath and had to get out of there.

As I reached the elevator the woman from earlier also got in. I decided to attempt to say something and I told her that 2 years ago they said I was going to probably dead, and I will never forget her response. “You look pretty not dead”.

As I went to pay for my parking, I paid on the terminal, as another woman who was having difficulty paying let me go first. So I offered to help her with the machine and paid her $6 parking pass. She didn’t expect it and was shocked and didn’t want to accept it and tried to pay me back but I told her to help someone else.

After, I took the back way to Kitchener, avoiding all the highways and pumped up the music. Trying to reflect on the calamity of the day that just happened. It was at this point that I had no motivation to go see anything else and I just wanted to be home and not stuck with a 20 hour drive back.

This is getting 1600 words long so the smashing and booming finale will have to wait for the next post.