The End.

After physio ended, things got a little easier. My bed was moved back upstairs, I was walking mostly without the walker, but if I left the house I needed it.

Now the next part I’m adding only because it took place during the ‘GBS period.’ I’m not looking for pity or to make you sad. While I was in the hospital, my dad told me that my great grandmother was ill, and was in the hospital. He didn’t want to make me upset, so he didn’t tell me how serious it was until I was in the rehab unit doing better. Turns out she had cancer and was getting palliative care. After my physio at home ended, we went to the doctor so I could get the O.K. to fly to Nova Scotia to see her one last time. They hadn’t told her what had happened to me, they just mentioned I was sick, for the same reason they only told me. They didn’t want to upset her. So when I walked into her hospital room with a walker, you could see the pain on her face. She couldn’t really talk much and was very weak, so she didn’t say anything it was just written on her face. Two months later, she passed away.

A few months after being discharged from the hospital, I went to do a follow up with the neurologist who had worked with me when I was in the first hospital. At this point, I was walking without the walker, my face had returned to what it looks like now, and I was doing a lot better. He asked me some questions, and told me I would be fine, the chance of reoccurrence was very slim and that I could continue to live regularly.

Despite this, there are some things I will not do, simply because it could trigger another incident and quite frankly, I’m not willing to risk that. I will never get anymore tattoos, I will never get a flu shot, and for 2 years, I would not so much as touch a jellybean. I’m doing good now, health-wise. I ran my first post-GBS 10K a year almost to the day of my admittance to the hospital. I continue to run now, and only experience minor side effects in my legs (sometimes I lose feeling in one or two of my toes, if my feet get too hot they go numb and tingly), my immune system is weakened, I am the first to catch a cold if someone has it. If my whole body gets too hot, I get dizzy and black out like the hospital incident. As for my face, if I drink or am tired, my eye weakens and closes a bit, I sporadically have nerve twitches in my face, I have to work really hard to make my smile even for pictures, and I have a dimple in my chin I never had before (don’t know how GBS managed that).

Thank you for taking the time to read my GBS experience, I hope you enjoyed it. I want to thank everyone who was there for me during this time, who brought me books, melted blizzards, did crosswords with me, and just came to visit in general. I sincerely appreciate it.

If you have any questions please let me know, I will be more than happy to answer them. I would also like to mention that I may have missed some parts of the story, I’m sure I’ve repressed some parts, and the drugs probably made me forget things as well.

Thank you again! Here’s a picture of my face post GBS (I chose one that you can actually notice the difference on so you can see the residual effects).

post

 

But again, let me emphasize you can’t usually notice it, I’m just so self conscious about it that I will notice it in every single picture. Here’s another post GBS picture where you can’t really see it.

bro n i

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I’m comin’ home

I spent 2 weeks in that rehab unit, same thing everyday, go to physio, read books, walk to Second Cup and get a chillatte, take a nap, read, physio, eat. Man oh man, I cannot emphasize how sick of hospital food I was, after the first 2 weeks, my parents would wait for my phone call asking them to bring me in something I could actually eat. How can people eat that food? I must admit though, the vegetarian lasagna was awesome! Only meal I enjoyed though.

Luckily, I was able to go home every weekend and sleep in my own bed. At this point I was still using a walker, I still did not have a lot of energy, and my right side of my face was still not moving at all. After 35 days in the hospital, I was finally discharged. The hospital set me up with an appointment at another hospital for my face, as well as a physiotherapist that would come to my home to continue to work on my strength. I knew that I was in for a long haul, but at the time, all I could think about was going home.

Let’s start with the discouraging face appointment. I show up at this specialist’s office, we go into an examination room, she takes photos of my face, gets me to make specific facial expressions. After an hour of this, do you know what she says to me? “I have no idea if your face will recover.” Scariest words. Ever. She continues, telling me she’d never dealt with GBS before, but had worked with some Bell’s Palsy (at this point, my face looked exactly like the image on this link.) She gave me 10 facial exercises to do everyday, suggested using a hot pak on my face and rebooked me for a few weeks later. I cannot begin to explain the breakdown I had on my way home. I was terrified; how could I ever be happy/confident/the same person with half of my face paralyzed? I know that this sounds incredibly shallow, but it’s how I felt. My mom tried to reassure me, but really, what can you say when the Doctor doesn’t even have the answer?

I diligently did my face exercises, I used a hot pak on my face, and I prayed like hell. Eventually, my face did ‘come back.’ It didn’t return until about a month after my hospital discharge. So that’s 2 months of nerve damage in my face, 2 months of paralysis. I got discouraged with my exercises, how many times can I raise my eyebrows in a mirror? How long can I try and smile with my philtrum centered? Eventually, I stopped doing them completely. Maybe that’s the reason my face never 100% returned, maybe it’s just because 2 months of nerve damage can mess up a face.

Okay, okay, I’m making my face sound like it’s a mangled mess. It’s not, to be honest, most people can’t even tell my face isn’t symmetrical. But I can, and when I’m drinking or tired, so can people who knew me pre-GBS. My right eye gets really tiny, like my eyelid isn’t strong enough to stay open. My smile is always crooked, my philtrum pulls to the left (stronger) side. They’re minute residual effects, I know. But I can’t stop seeing them, I will forever see them. Now that I’ve pointed this out to you, you will notice too, guaranteed!

Let’s move on to my physio at home. It sucked! In the beginning, she came 3x a week and spent an hour or so with me, making me walk up and down stairs, do exercises on those giant balls, etc. I think the reason I hated it so much was because I used to go to the gym and run all the time, and to now be reverting back to extremely basic tasks was discouraging, frustrating, you get my jist.

Check back tomorrow for the final segment! I truly appreciate everyone taking the time to read my story.

It’s rehab time, baby

2 weeks in the hospital, I’m going stir crazy. I must thank a family friend though. Her daughter was a nurse at the same hospital, and she would bring me seasons of the TV show Bones, and they brought me wonton soup. They were amazing to me. So now I’ve seen 4 seasons of Bones and  probably read 25 books, my stepdad can’t bring them in fast enough. The nurses come in to find me balling my eyes out over and over. Each book gets to me way too much. I’m finally off morphine for my pain, I’m getting stronger each day. But my face, it’s staying the same. No luck on my right side. Now, I learn I will be going to the rehab unit at the other hospital. Now I will spend my days with older adults who’ve had hip and knee replacements, and I will be a 19 year old kid who can’t really walk for a stupid reason (I was very emotional these days.) My best friend was a saviour in these first two weeks. She booked time off work, took a bus to Toronto, and would come to the hospital everyday with my stepdad and climb into bed with me and we would do crosswords and read and knit together all day. She was amazing, I’m so grateful for her. My mom would tease us and call us twisted sisters, the nurses would just work around her when they took my blood.

I do have a kind of funny story to lighten this somber mood. When the day came to get transferred, I was sitting on my bed all ready to go, dressed in normal (but easy to put on) clothes. Two guys come in, the first thing they say? “Is your grandma in the washroom? We’re ready to go when she is.” I kind of gave them a blank stare, and then they realized I was the patient. “You’re Kyla?” And I nodded. They awkwardly smiled and apologized, telling me they usually transfer older people to the rehab unit and weren’t expecting someone my age. We had a good laugh and then they loaded me on the stretcher and took me over.

In the rehab unit, I lucked in for the first week, they didn’t have room in the public rooms, so I got put into a private room that you typically have to pay for. This was probably a good thing, as I cried a lot those first few days, at least I could do so in privacy. Now, it’s time for rehab. I’m scared I’m going to forget some details of this story that you should know (this took place almost 3 years ago.) I hope I don’t forget anything.

Okay, so rehab. Basically we were working on rebuilding the strength, balance and coordination in my legs, and somewhat my arms. No one was worrying about my face just yet, I guess it was more important that I could walk (which is true I guess.) Now instead of sitting in my room all day reading, I was forced to do rehab twice a day for 45 minutes to an hour. This involved walking up 3 stairs, walking down these stairs, doing stretches, walking with a balance bar beside me, lifting and lowering my legs, catching a ball, etc. I can’t remember everything I did, but you get the idea. At this point, a social worker came in to check on my emotional well-being. I did break down a little bit with her, but who wouldn’t? I can’t emphasize enough how grateful I am that I had such an amazing support system while I went through this. My parents visited everyday and worked so hard to keep my spirits up. At this point I was allowed to go home for a night or two on the weekends, which was a great break from the white walls of a hospital. I was also allowed to sign out on a whiteboard and walk around the hospital (with my walker of course), I could even go outside!

So we will leave off today with my increased freedom. Check back tomorrow, I get out of the hospital!

my best friend

My amazing best friend and I

Life’s a mystery

Let’s just jump right back into this.

The doctors had no clue what the hell was going on with me. (GBS is very rare, 1-2 in 100,000.) They began to run tests. They did MRIs, spinal taps, x-rays, ultrasounds, you name it, they did it. At the beginning there was concern that I had Multiple Sclerosis (at 19 this is a terrifying thought, well at any age this can be terrifying.) Finally they did an Electromyogram that resulted in a diagnosis after they shocked my leg and got no response. Oh, I should add, they had no idea which floor of the hospital to put me on because they didn’t know what was wrong, so I got bounced from place to place for the first 3 days (it took them 3 days to diagnose me.) I slept in the room where they set broken bones, then in another random emergency room, then in some room in a hidden hallway. Finally, after diagnosis I was put into my first more permanent room of many. I was put on the neuro ward alongside kids who had just had major brain surgery, etc. Since the risk of this floor was so high, each patient had their own room with a nurse’s station directly in front of their room (1 nurse to 2 patients), so pretty much I was on display for a week in this room.

Although we had a diagnosis, we were still scared as hell. They had no idea how far the GBS would progress, what bodily functions it would affect, etc. Everyday they did lung capacity tests to ensure the GBS hadn’t started to affect my lungs, and they monitored my ability to chew and put me on a liquid diet for a few days to be safe. Since there’s no treatment for GBS, I was given 3 days of Intravenous immunoglobulin  to help speed up my recovery. During this first week I was in extreme pain. I would wake up crying in the middle of the night. They gave me morphine, the pain was so bad. It was the weirdest pain too, it was like a ‘growing pain’ in my back, I just couldn’t get comfortable and it would ache so badly. I couldn’t really use my legs, had very little upper body strength, and for this first week both sides of my face had become paralyzed, hence my liquid diet. The only time I left my bed was to go to the washroom, and even then I had a walker that I used to take the 3 steps to the washroom. Nurses had to help me go, and I had to have sponge baths because I couldn’t get to the shower. 

I should also mention I had a mild case of GBS. One of my nurses told me his story, his entire body was affected and he had to be incubated and fed through a straw. In my case, only my legs and face were affected. I was lucky. Also, I’ve heard stories of people who never fully recover, in one case a woman cannot feel hot/cold with her skin anymore because of GBS. My remaining effects are nowhere near as serious, and I’m grateful for this fact.

After this first week, when it was determined that my GBS would not progress anymore, I was moved to a more general ward to recover some more before I went to rehab. I spent another week in this general ward, sharing a room with an older lady. I began using my walker and doing laps around the ward. I also had my first shower this week, though I blacked out on my walk there. It was the weirdest thing, I couldn’t see, but I could talk and hear, but everything sounded like it was very far away, a nurse found me wandering around and led me back to my room and they put me on bed rest for the rest of that day. I would say that this week was the toughest. Now, it was just a waiting game, would my legs return to normal? Would my face? My left side had already come back, it was only “out of commission” for the first week, the right side however… well, you’ll see. With all the unknown, and loneliness that was hitting, I drowned myself in books and worked really hard to stay positive.

At this point, I have to thank my stepdad, without him I think I would have become very depressed. The first three nights when I was undiagnosed, he slept on a chair outside of my room, he only left to shower and bring me more clothes. He was amazing. His boss was also amazing, letting him work in the morning and then spend the afternoons with me. We would just sit in the room, we ran out of things to talk about very quickly, but just having him there made it so much easier. We refused to let my mom come back from Afghanistan, there was nothing she could do and we knew that I wouldn’t get worse, and she only had a few more weeks, so we made her stay. It was one of the hardest parts for us, telling her to not come home.

After two weeks, my legs were getting a little stronger, I would walk with my walker for short bursts, then would need to rest, but I could walk, that was enough for me. Close friends came to visit, my dad, stepmom and brother came to see me. It was now time for the waiting game. The hardest part was soon to come, rehabilitation. And this was when my mom came home. Talk about emotionally draining. It was so great to see her, and when she saw me, you could almost see the heartbreak in her eyes. It was an emotional reunion, but boy was I glad to see her. At this point, I was allowed to go home on a weekend visit. They ‘checked me out’ and brought me home for a night. They moved my bed to the main floor because I wasn’t strong enough to climb the stairs. I only did them once, to have a shower with my special shower chair. Woot! A little freedom!

Stay tuned, thanks for reading!

Here’s a little more about me…

I’ve been wondering whether or not to write this piece for quite a while now. I wondered if it was too much information for my readers, if my real life friends that read this would roll their eyes at having to hear this story again. But then I thought, if I had been able to read this when I was going through the same thing, it would help put things into perspective. When I was going through this, hearing the nurses’ stories and internet research were the only things that kept me from sinking into a deep depression.

So now I bet you’re wondering, what the hell is she talking about? This is the start of my story about my experience with Guillain-Barre Syndrome ($10 says you have no clue what this is.) Anyway, it was the scariest experience of my life, and I’ve decided to tell the detail-heavy story about my 4 months (and somewhat the rest of my life) dealing with this attack.

Let’s start at the beginning. It was during the exam period of my 3rd year in university. I had the worst stomach flu/food poisoning (from jellybeans or so I’m convinced) case ever. I was so sick, I had to write my last exam with my head on the desk trying to avoid throwing up. A few days before, I’d gotten my first (and only ever) tattoo. I’m telling you these details because these are the potential things that triggered my GBS. This is all I will ever know about why it happened. Okay, let me continue, following these events, I got the worst headache of my life. It lasted almost a week and I couldn’t stop crying because of the pain. Next, my feet started to feel funny, almost like they were asleep all the time. One night, after a few days of headaches and sleeping feet, I had a bath. A few minutes into my bath,  I couldn’t feel anything from the waist down, it was like my legs were just dead weight. I drained the tub, hoisted myself out of the tub and called my friend to take me to the hospital (at this time, I was living with only my stepdad because my mom was serving in Afghanistan, and I didn’t want to wake him up since he worked so early.) She took me to the hospital, at this point I was walking like I was drunk, I couldn’t feel anything from my knees down. We get to the hospital, the nurse tells me I’m fine, I can wait till the morning to see a doctor, and if I decide to stay and wait it will be hours because I’m not high on the triage.

We decided to go home, my friend brought me home and helped me get to bed. The next day, my stepdad stayed home with me. He dropped me off at the clinic. I was seen fairly quickly, and the doctor had no clue what was going on with my body. He told me he’d monitor me and that he’d see me tomorrow for another check up. So the next day, I head down to the doctor, he looks at my face and says, “does your face normally look like this?” I probably blanched at this statement, I looked in the mirror and realized half of my face had drooped and I couldn’t move my eyebrow on the right side.  I told him it didn’t, and he wrote me a referral to the hospital. My stepdad and I then headed to the hospital. He had groceries in the car so he dropped me off and told me he’d be right back. By the time he returned, I was admitted and they were beginning the first of many tests they would run in order to diagnose me.

I hope I didn’t bore you with this story. Stay tuned tomorrow.

Pre illnessThis is my brother and I before GBS