What lies within us…

It’s been quite a while since I last wrote. As I mentioned in my last post back in November, things were a little crazy in my personal life. And the last few months have continued to be a bit of a roller coaster ride, so I haven’t had the focus or the time needed to write. However, things have finally settled down and things are looking up, so I am back!

I was recently invited by a doctor to speak at the University of Alberta, where I shared my experience with GBS, with over two hundred 2nd year medical students. Being able to talk to future doctors was an amazing opportunity for me, and I knew that by sharing my story, I would be educating them what Guillain-Barre is, from a PATIENT’s perspective.

Talking to them about GBS felt a little strange at first, considering it’s usually the medical field that does the talking when it comes to rare medical conditions… however it was a very important message for me to deliver since I had my fair share of challenges with doctors and nurses along the way. And not because they were difficult or challenging, (because most were actually amazing and accommodating) just at times, some of them didn’t quite know how to deal with GBS because they had never dealt with it before.

My goal in speaking with these medical students – if they ever have a patient with Guillain-Barre – was to teach them to truly get to know these patients and their cases individually. GBS is so different from case to case, and what someone’s experiences, struggles and even recovery looks like, can be completely different from the next person’s. It is important that these doctors realise that they can’t just go by the “textbook case” every time. There is no “textbook” case of GBS and everyone’s experience is different. In a “textbook case”, I should have hit my plateau (absolute worst) a lot sooner than I did. In a “textbook case”, I shouldn’t have had issues with my eyes, or severe nausea, but I did. In a “textbook case”, I should not have been walking for at least 2 years, but I walked in less than 5 months. Sometimes, what the books, or even what the tests tell them about GBS, are not the way that things will go.

I’ve met some GBS patients that were paralyzed but had zero pain, where I was dealing with pain that was often unmanageable. I’ve met patients that their muscle function came back in their feet and legs first, and then in their hands and arms – where with me it was the other way around. I’ve met patients that spent as little as a few days in ICU, and others that spent over 6 months. I’ve met patients that were told that they would be at their absolute best after 2 years (which is also what I was told) but 5 years later, they are still improving and getting stronger. I continue to say time and time again – everyone’s experience with GBS is their own and may not look like someone else’s. The doctors (and nurses) need to get to know exactly what the needs of that patient are and go from there. What works for one patient may not work for another.

For example, with me, my psychological needs were more important than my physical needs – to me, it was more important that I be at home with my newborn daughter, than it was to spend another few weeks in rehab. Maybe I would have gotten stronger and walked a little sooner had I stayed, but that wasn’t my priority, being with Casey was. Luckily, my neurologist at the Glenrose hospital understood that and released me after three weeks instead of another several.

Overall, the talk went really well, and I got to answer some questions, which I thought was very neat. The most important thing that I hoped that these medical students got out of my talk was for them to treat each and every case of GBS individually.

With regards to other advocacy work I have going on, I continue to do whatever I can to create awareness. I still put on a support group in Edmonton every three months and I continue to email people around the world that have questions for me about Guillain-Barre. In May, I will be attending a GBS/CIDP conference in Vancouver, and we will also be putting on our annual Awareness Picnic for GBS/CIDP Awareness Month the weekend after. Stay tuned for more details!!

In my personal life, as I mentioned before, I have gone through quite a substantial amount of soul searching, and I can say that I have grown and changed more in the last six months than I have in my entire life. GBS changed my entire outlook on life and I have been aspiring to not only give myself the life that I have always wanted, but to also be the person that I have always wanted to be… I know firsthand that life is just too short not to do that now.

My life has been going through a lot of changes in the last six months, one of those changes being that my husband and I have decided to move forward with a permanent separation. What led to the breakdown of our marriage is not something that can be explained in one conversation, nor should it be, but we are doing what is best for the three of us. And what’s best for us is that James and I move forward as friends. Our number one priority will always be our daughter Casey and the three of us will always be a family. Yes, our relationship looks a little different now than it did six months ago when we were still together, but I know that we will continue to be in each other’s lives as great friends.

I will forever appreciate all that James did for me when I was in the hospital dealing with GBS, and there isn’t anyone that I could imagine going through that experience with. I could have not gotten to where I am today had it not been for all of his love and support along the way. He is a huge reason that I was able to get back to my life. And although I did write my experience with GBS, in my book titled, Happily Ever After, I still believe that I am going to live my version of “Happily Ever After”, it will just look a little bit different now. And I am ok with that.

I think it is very important (for everyone) to take a look at the situations we are put into; at the struggles that we are faced with, and keep moving forward. Yes, of course there are going to be hard days, but what will get you through those days, is trusting that you will make it through them, and trusting that everything happens for a reason.

I constantly get asked how I am coping and how I am managing to stay so positive through all of this, and the key to my happiness, is accepting where I am in my life, and making the best of it every day. And that doesn’t just apply to my situation, it applies to any situation. Life isn’t always perfect, but as I have learned from GBS, it is most definitely worth it.

Looking back on my experience, I see that GBS was a blessing, as it has prepared me for every challenge that I will ever have to face in my life. Because in retrospect, no matter how shitty of a day I may have, no matter what sort of drama comes into my life, nothing can compare to what I went through with GBS. Even in my darkest days in ICU, when I thought I was going to die, I eventually got through it. There were times that I didn’t think I would, but I did, and now I’m a lot stronger, and a lot more capable of handling tough situations. I realize, and I hope others realize that even when things are going so terrible you almost can’t breathe; it won’t always be like this. Things will get better. And not only will you get through it, you will be stronger because of it. You just have to take each day, one obstacle at a time.

Because of my experience with GBS – knowing everything that I made it through in the past- I have been able to maintain a very positive outlook in the challenges I have faced over the last few months. And now that I’ve gotten past them, I am in a very good place. I am happy and very excited about my future and what’s to come in the next chapter of my life!

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Life Goes On…

I can’t believe it’s already November…the months are just flying by lately. Having a young daughter that literally seems to be growing before my eyes definitely doesn’t slow time down either, that’s for sure. It’s crazy how much she changes from week to week! She is such a little sunshine and brings so much joy, love and laughter into my life
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An update on some of the things that have occurred since my last post:

My girlfriend Sarah and I completed the 5 km “Climb of Hope” run in September, which was such an amazing accomplishment for me. Although this was my second 5km race, this was the first time I ran one – and this was no easy course!!! It was in a ravine so a lot of it was uphill, it was plus 20 and very sunny, plus we had to climb a huge staircase near the end of it!! My thighs were burning for days after! I was very pleased with myself; I knew that this was not a very competitive race (its purpose was fundraising for Cancer) and a lot of people weren’t running all out for it, but I was still able to keep up with the more serious runners. For someone that has had GBS, I think that’s pretty amazing.

Although I had known where the race was, I wasn’t quite sure where we would end up, and I couldn’t help but smile when we ran across the pedestrian bridge over the North Saskatchewan River and through the river valley. It was almost exactly 2 years prior to the day that I went to the exact same spot for my first “official” walk after GBS. I talk about that walk in my book – about how I couldn’t go more than ten minutes because my legs weren’t strong enough yet – and I just thought it was really neat that two years later I was able to do that same path, only running! It was such a great achievement, and it made me even prouder when I saw that I placed 77 out of 315 people. Not bad at all!!
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Although I stay in contact with many GBS patients around the world through email, I don’t get to meet any of them in person- which makes it tough when all I really want to do is show them that they will get better, like I have. But recently I had the pleasure of meeting a young woman who was diagnosed with GBS a few months ago, in person.  A mutual friend got me in touch with her family, and I went to visit her in hopes of lifting her spirits.

Not only was she in the same hospital that I was, she was in the very same room in the Intensive Care Unit that I was two and a half years ago. It gave me shivers to think of being back in that room; although I have been back to the ICU many times, I have not stepped into that room since I was rolled out of there on my air bed in May of 2011. Being back in ICU always brings back memories for me; the smell of the air, the sound of the machines beeping and the overall atmosphere- it all brings me back to the time I spent there. But I can handle it and it is never hard going back. However, I was nervous about going back into my old room and I wondered if being back in there would be too hard. This was the room where I spent 70 days laying paralyzed, the room where I went through the most pain and suffering I’ve ever been through, and the room where I had come to terms that I was probably going to die in. But despite these feelings, I was determined to walk in there with my head held high and be as positive as I could for the young woman with GBS; because I knew that’s what she needed.

As it turned out, when I got to ICU to see her, I received the wonderful news that she had improved and was moved to a regular ward. I’ll admit I did feel a sense of relief that I didn’t have to go back into my old room! When I got to her room to meet her, it was definitely hard to see her in the state that she was in; physically unable to move much of her body, and emotionally drained. I could tell that she was in so much pain both physically and mentally. She constantly shifted her body, struggling to find a comfy position that would ease the pain, likely wondering when she could get her next dose of medication. I had actually forgotten about all the pain but as I watched her it all came back to me. She had tears in her eyes for most of the time I was with her, likely trying to hold back the tears just like I had so many times. She made one comment about how she just wanted to wake up from this nightmare and I just wanted to cry. Because I knew exactly what she meant. It didn’t matter that she was being told that she would get through this one day, what mattered to her was that she was going through hell now. I knew it all too well.

I spent about an hour with her; she asked me questions and I tried to answer them in the most honest yet motivating way possible. She needed to know that yes, this was going to be a very difficult journey – learning to walk again would be one of the hardest things she would ever have to do in her life, but she would get through it, and she would come out of it even stronger, just like I did.

I had tears in my eyes when I left her room that day, just knowing exactly how she was feeling. But deep down, I knew that one day she would get back to her life, even if she didn’t believe that quite yet. I had so much faith in her, even if she didn’t have it for herself.

I have visited her since then and brought along a picture with the quote “Courage does not always roar. Sometimes courage is the quiet voice at days end, saying, I will try again tomorrow.” This is the picture that I had hanging on the wall in front of my bed in the ICU. We put it in front of her bed as well, so that she could look at it every day, just like I did for many weeks. I knew it was just words on piece of paper, but I hoped that these words inspired her the way that they did for me.

I recently received the exciting news that she was transferred to the Glenrose for rehab…I am very excited for her as I know how amazing the Glenrose is and how much it will help her get back to her life. And I look forward to seeing her again soon and seeing all of her progress!

Litfest was just a few weeks ago, and I was so honored to be a part of such a wonderful festival. Along with a few other authors, I did a reading at the Writer’s Cabaret, where I shared a little bit about my story and read a piece from my book. Like I have mentioned before, I hate public speaking but slowly but surely I am getting more comfortable in front of an audience. I think it definitely helps that I am talking about something that I know so well and that I hold so dear to my heart!

Being a part of Litfest gave me the ability to partake in other author events, and one that I was extremely excited to attend was the one for Amanda Lindhout. She was the young journalist that was kidnapped in Somolia and held captive for 15 months, and she wrote about her journey, in the book titled “A House in the Sky.” She has had a lot of publicity; she is on Oprah’s book list; and not surprisingly, the event was sold out. Within minutes of hearing her speak, I couldn’t help but feel a connection to her. Now obviously what we went through was COMPLETELY different; I can’t even imagine what it was like for her to be kidnapped and brutally abused for 15 months in captivity, but there were definitely some similarities that I felt from my story to hers. We were the same age when we experienced these dramatic events, and these events were completely life changing to the both of us. Hearing her talk about how she struggled to make it through every minute of every day certainly reminded me of my own time that I struggled. How she talked about what she would do if she made it out alive; how she sometimes prayed that she would just die instead, these things I felt as well. But the thing that I connected with her the most on was the way that she came out of this. After all that she had been through, she has come out as an even stronger person. She is now doing all she can to help others, and she has even started The Global Enrichment Foundation, a non-profit organization dedicated to igniting leadership in Somalia through educational and community-based empowerment programs.  I read her book in under a week and wow is all I have to say – the things that she did with her mind to be able to get through the horrendous things that happened to her is beyond inspiring. I strongly recommend reading this book; it is definitely eye opening and extremely inspirational!

Being a part of Litfest opened up the door for some free publicity, and I was approached to do interviews with two Edmonton based media outlets. The first was AMI-TV, a Canadian television channel that broadcasts media to those that are blind, deaf, learning disabled, or learning English as a second language. The second was CJSR; the campus based radio station at the University of Alberta.  I am always grateful for the continued interest in my story – being able to share my experience with them is such a great way to create awareness about Guillain-Barre syndrome. The interview with AMI-TV aired at the end of October, which can be viewed HERE. The interview with CJSR is still being edited but I will post once it has aired.

I am very excited for my next big endeavor – my first speaking engagement at a Women’s Empowerment Conference, this upcoming weekend. I am very excited to share my experience with GBS with the women at the conference and hope that my story inspires and empowers them to live their lives to the absolute fullest!

In my personal life, things have been a little crazy and hectic, and like I mentioned before, this seems to get in the way of me writing as often as I would like to….but I will certainly try to keep you updated as often as I can!

Like I have written about many times, Guillain-Barre has changed me so much as a person, and continues to change me every day. Although it was almost three years ago that I was diagnosed- and there are often days where I go by without thinking about it – there is not a day that goes by where I am not making decisions based on my experience.

What I went through changed my entire outlook on life. I am constantly thinking about who I am and who I want to be, and aspiring to become that person. And unfortunately, (or maybe fortunately, I don’t quite know) this has caused me quite a bit of confusion about the life that I am leading today. I am taking some time on my own to do some major soul searching and hope that the answers will soon come to me.

I know a lot of people can’t relate to what I went through, as most people don’t experience a near death experience under 30. But what people need to realize, is that near death experiences profoundly change people’s lives. My experience with GBS was a life changing event; it moved me, it shook me up, and it completely changed my perspective, on EVERYTHING. And I have embarked on this new road to self-discovery and self-development. Most people don’t get serious about bettering themselves as a person until they experience a life-changing event, and this is where I am currently at. I know how short life is, and just how quickly things can change at any minute. Life is too short to be anything but the person you want to be.  So bear with me as I continue on this journey of mine that I call “Life”.

And one thing that I have learned about life, is that it always goes on. Not matter what, we all get through the hard times, and come out even stronger than when we went in. In the end, everything always works out the way that it is meant to.

 

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Goodbye summer

Summer is slowly winding down. When I look back on the weather over the last few months, we’ve been pretty lucky. Overall, we had a really nice summer, and almost every weekend was hot and sunny. We were fortunate to be able to get out of the city a few times as well. In July I had a friend’s wedding in Canmore with a large group of friends, then August we spent nine days in BC; two days in Golden, five in Salmon Arm with my cousin Spencer and his girlfriend Faith, and two in Clearwater (for a family reunion). The weather for all three trips was beautiful as well and our family really got to enjoy the sun.
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On top of our time away we have been keeping pretty busy. We took Casey to K-Days, our fair in Edmonton, which she loved. Even though it was raining, Casey had such a great time. Over a month later and she is still talking about the horsey rides she went on. I love watching her experience things for the first time. Her excitement and joy makes these things so much fun. Now I understand why my parents made sure to take us to all these things when I was little! 20130909-204738.jpg

We also finished several different projects at our house this summer, including getting new shingles for our roof, building a neck deck in our yard, moving our spare room to the basement and making Casey a toy room. 

Physically, not much has changed with my residuals from Guillain-Barre Syndrome. My legs are still weaker than normal, but I am still running, which is great therapy for them. Along with several of my girlfriends, I completed my first official 5km race at Color Me Rad in early July, and even though I could have easily ran it, we chose to walk instead. There were a lot of us, and some of the girls have previous injuries, so we decided to walk it together as a group. Getting blasted with color bombs was a lot of fun and we will definitely be doing it again next year!

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There is another 5km run next weekend that I will be running with my girlfriend Sarah, called Climb of Hope, which raises money for The Canadian Cancer Society. Both my auntie and my grandmother passed away from cancer so this is a great cause for me to raise money for. This run is a bit different, as it incorporates stairs; so Sarah and I have been training on stairs as often as we can. I’m actually quite impressed that my weak ankles can even handle it!!

My ankles are still quite weak, and although it truly breaks my heart to admit this, I have accepted the fact that I will probably never wear heels as often as I did before GBS. They are just too hard to walk in. The risk of twisting or breaking my ankle just isn’t worth it so unless it’s a very special occasion and indoors, I only ever wear flats now. And for that reason, I don’t think I will ever feel quite like myself again. But oh well, there are worse things in life that not being able to wear high heels….hmmm….did I really just say that ?

I still suffer from foot drop too; which sometimes causes me to catch my toe on the ground when I walk, and in mid-August I got my first injury because of it. Well partially because of it anyways. I was out for a run and a piece of the sidewalk was sticking up higher than the rest, which my toe caught, and I went FLYING! I smashed up my knee really badly, which looked awful, but it heeled pretty quickly, and hey it could have been worse, it could have been my face! It was only a week before I was able to start running again and now I am much more aware of it.

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I have actually started running on my lunch breaks now, which is a schedule that I find a lot easier to stick to. I usually just stay around my office for lunch anyways, and this frees up my evenings with  Casey. It’s crazy how much I love running now; I used to hate it and could never imagine doing it regularly, but now it’s such a big part of my life and my recovery from GBS. I find it gives me much more energy, and it’s such a great stress-reliever. I always look forward to getting out in the fresh air, listening to music, being alone with my thoughts and pumping out some endorphins.

In addition to running, I have also started the Insanity program again. With how busy we have been this summer, I haven’t been going for runs as often as I would like to…plus with all the trips away it’s been hard to eat healthy, so I’ve started to put on a few pounds. I’ve tried other programs but I have yet to find anything that motivates me as much as Shawn T from Insanity, so getting back into it was an easy solution for me. I’m on my second week and am loving it just as much as last time. Even though I’ve done it before, it’s still extremely challenging and such an amazing workout. And I can tell already that it will help re-strengthen my ankles again, which hopefully means I can wear high heels more often down the road!

As for my book, I continue to reach people all around the world. Most recently, the family of a young woman in California (who is the same age as I was when I was diagnosed with GBS) contacted me asking me to Skype with her. Of course I agreed. I could understand completely why she would want to talk to someone that had been through what she was going through, and I was very excited to show her that she will recover from Guillain-Barre and to keep fighting.

But as soon as I saw her on my screen, my excitement changed to sadness. I didn’t think I would be affected by seeing her, but I was. She was in ICU, paralyzed in a hospital bed, with a tracheotomy tube sticking out of her neck, just like I was, and my own experience came rushing back to me. It was all too familiar. I could hear the ventilator beeping in the background, just like it did for me every minute for three months straight, and it gave me the chills. I watched as she struggled to breathe through the machine, while also trying to talk – which I know is extremely difficult to do – and it brought me back to the severe panic attacks I got from just trying to breathe. I didn’t need to know her to understand what she was feeling. Not only could I see it in her eyes, but I also just knew, because I had been there too. I knew she was in pain, both physically and mentally. She looked sad, lost, terrified and broken…exactly how I felt.

I kept it together in spite of the feelings it was bringing up, and I answered all the questions she had; like hard rehab would be, how long it took for me to walk again and what her chances of recovery were. And I was more than happy to share that I was back to normal now and that I have made a complete recovery. I was happy to tell her that she had every reason to believe that she would make a complete recovery as well, that it would just take time.

As soon as the call ended, I cried. I cried because I knew that even though I had answered all her questions – even though I had showed her that you can recover from GBS – it wouldn’t change how she felt. It wouldn’t take away her pain, her fear or her sadness. And I knew exactly how much work was ahead of her and that she still had such a long way to go. Getting out of ICU was just the beginning of a long, long road to recovery. And my heart broke for her. But, I also knew that eventually she would get past this nightmare, and I knew that she would come out of it even stronger than before. Even if I couldn’t take away her pain, I hoped that I gave her the strength to keep fighting, even if just for a moment.

LitFest is less than two months away, which I am so excited about! For those of you that haven’t read my previous posts, I have been invited to be a part of LitFest – a literary festival in Edmonton that celebrates writing over 12 days at various different venues around the city. I am honored and very excited to be doing a reading from my book “Happily Ever After” at The Writers Cabaret on Sunday, October 20th (6pm) at the ARTery downtown. Like I said before, I often feel like Carrie Bradshaw from Sex and The City when I write my blogs, and now that I get to do an actual book reading from my book, I feel even more like her! Even though I don’t really like public speaking, I do feel that being invited to do a reading is a great accomplishment, and a great way to share my story. I can’t wait!! For more information or to purchase tickets, please visit the LitFest website HERE.

 

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Tips for families dealing with GBS

I receive emails on a regular basis from concerned family members of patients newly diagnosed with GBS, thanking me for sharing my story and pleading for me to give them advice on how to deal with this. Knowing that I experienced firsthand what their family has gone through, I’m sure they want me to tell them how my family and I managed to get through it. Which I can definitely appreciate; my family was in the exact same position two and a half years ago and they were also desperate for any kind of suggestions to help them cope.

For me, the hospital (more specifically ICU) was the most challenging and terrifying part of my whole journey with GBS. Being in that acute stage in the hospital, still not quite understanding what was happening to me, and still not fully understanding the extent of the disease, made the unknown terrifying. But looking back now, I realize that there were many short moments of comfort that I did experience; tiny things that actually did make life a little easier for both me and my family during that time. These suggestions may not help everyone, as every person deals with things differently, but for me these things really did make a difference.

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Here are some suggestions:

•Show them all the different You Tube videos out there on Guillain-Barre. I know some of my family members were hesitant on showing me them because they didn’t want to scare me, but personally, I was happier that I wasn’t being left in the dark. I wanted to know as much as I could about what was happening to my body. When I was told that I had some rare disease, (and after hearing most of the doctors and nurses tell me that they had never seen anyone with GBS before) it only made me that much more terrified. Seeing another patient’s video of his journey with GBS, helped show me that there were other people out there that had had it, gotten through it and recovered from it.

• They need to be reminded every single day, if not a hundred times a day, that they will get better. GBS is an acute illness, meaning that once the patient reaches their absolute worst, they start to recover. There is every reason to believe that they will make a full recovery. No matter what, they will get out of the hospital and back to their life again. But it is going to take time. It’s going to take a really long time. And that will be the hardest part – waiting. But it will come. The disease will eventually run its course. So remind them of this. Remind them constantly that they will get better. And more importantly, stay positive, especially around them. Don’t lose hope and don’t give up. You will all get through it.

• Encourage them not to give up fighting. As they are learning all the things they have to learn again, (like breathing on their own, eating with cutlery, and walking) tell them to focus on each of these things, one thing at a time. When I thought about all the different things I was going to have to learn how to do again, I was so overwhelmed thinking about it all and this gave me panic attacks. Tell them to focus on one task at a time, and just take one day at a time. They can deal with tomorrow’s struggles, tomorrow. Tell them to just focus on getting through today.

• If you are able to find someone that has had GBS in the past to visit them, do it. Being diagnosed with such a rare illness that no one has heard of and doctors rarely come across is extremely isolating, so being able to meet someone else that knows what they are going through seriously makes all the difference in the world! The GBS Foundation has liaisons all around the world so get in touch with them and hopefully they can find someone within your area to come and talk to them.

• Read them their emails, Facebook messages/posts and text messages. I was trapped in my own body, isolated in a hospital room and having my mom read my messages to me gave me a lot of comfort knowing that there were people out there thinking about me.

• Take care of them! A lot of the time, nurses don’t have the time to do more than the basics, so do what you can to make them feel clean! It’s bad enough that they don’t get to shower. So brush their teeth (use an electric toothbrush to make it easier and faster) wash their face, shampoo their hair, and put lotion on their hands and legs (if it’s not painful for them). For girls, if they are up for it, even shave their legs and paint their toenails. I felt absolutely disgusting as I lay in that hospital bed for days and days but having my family do these minor things did help me feel better.

• Being trapped in a bed, time is going to feel like it is going by even slower than it is. Find things to do to pass the time. Watch movies and read them books. Let them watch the news if they like that, so they don’t feel so isolated and out of touch with the world. To brighten up the mood in their room, listen to upbeat music, and try and make them laugh!!

• Try and make their hospital room feel more like home. Bring them their pillows and blankets from their house. Put up pictures of family and friends where they can see them. If they have pets, see if you can bring them to the hospital for a visit, (possibly even just outside).

• For me, even though I was improving on a weekly basis, I couldn’t see it. In my mind I was not getting better. You need to show them and remind them constantly that even the tiniest improvement is a sign that they are getting better. Videotape those tiny first movements, from fingers and toes wiggling, to them holding up their head up again. In a few weeks when they are even stronger, show them those videos to remind them of how they have improved. They will slowly realize that they are getting better, even it if it is taking a very long time. As they reach new milestones, document them and constantly point out the things that they can do this week that they may not have been able to do last week. These things may help reassure them that they really are improving- even if they don’t see it yet.

GBS will likely be the most challenging thing that your family will ever face. But you will all get through it. It's not going to be easy, but I promise that you will come out of it stronger than before. Remember to stay positive and keep fighting.

"Courage does not always roar. Sometimes courage is the quiet voice at days end, saying "I'll try again tomorrow."

Exciting News!

It’s been quite a while since I have written anything. Several different personal things going on in my life right now have really held me back from having the time, energy or focus needed to sit down and write. But I received some exciting news today that I really wanted to share and decided to write a quick update to everyone!

First off, my YouTube video recently hit 50,000 views on YouTube!! I am absolutely amazed by this number. I continue to get emails from people all over the world that have seen it and want to reach out to thank me for inspiring them, and helping them or their family members deal with GBS. I can’t thank my mom enough for taking all of the pictures and videos that she did, because without those, there would not be a video. Not only is this YouTube video helping to create awareness on the disease, I know that it is also helping others with their fight with GBS, just like Kit’s video did for me.

The EXTREMELY exciting news is that I just found out my book will be featured at LitFest this October!! Litfest is a non-fiction literature festival that celebrates writing over 12 days throughout Edmonton at various different venues. I am very fortunate to be among approximately 50 authors chosen to be showcased. I know that this is HUGE exposure for my story and Guillain-Barre syndrome and I am so excited to take part in this festival!

A quick update on Casey, as everyone continues to ask about her (she’s the star of my story): she is almost 2 and a half and she is growing up so quickly. She is the biggest girly-girl (I guess the apple doesn’t fall far from the tree!); she loves princesses, jewelry, makeup, and wearing dresses EVERY minute of every day. She is also talking up a storm and I am loving that we can actually carry on full conversations with her now. We also recently potty trained her, which I apologize to those that have difficulty with this, but it really was unbelievably easy with her. She’s so easy going and it was such a simple switch from diapers to the potty. It’s so cliché, but it’s so true- they really do grow up so fast!

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GBS/CIDP Conference 2013

It’s been a few days since my mom and I got back from Toronto. The conference was amazing. I met so many inspiring people, all with inspiring stories. I met one woman that actually had GBS while she was pregnant, and another that was diagnosed with CIDP when she had a newborn too. I met a woman that also wrote a book about her experience with GBS, and I really bonded with her, for several reasons. I met people with all different stories, some very different than mine, and some so similar it’s scary. One man I met pretty much had the exact same experience as I did – it was a very serious case, we spent almost the same amount of time in ICU, almost the same amount of time in rehab, we both recovered quickly and completely, and just faced a lot of the same challenges along the way. To meet someone that could relate to so many details of what I went through was awesome. There’s not many people that truly understand what I have gone through – like how I have that strange hypersensitivity feeling I have in my feet – so it was really nice to have someone know exactly what I was talking about for a change.

Friday was Liaison day, with all the different volunteers from around the country. Although there are many GBS patients here in Alberta, there aren’t any other liaisons, so it was really, really nice to be surrounded by so many others that are doing what I am trying to do here. Because of all these amazing people, who completely volunteer their time, people are getting the support they need. Hearing how some of these liaisons are going into Universities to talk about GBS and CIDP, others are hopping on their motorcycles to drive many miles to talk with a patient, and others are handing out information to medical offices and hospitals; it makes me so proud to be a part of such a wonderful foundation.

Saturday was for the public, so there were many different GBS and CIDP patients there with their families. I was so surprised at how many people came up to me to tell me that they saw my video on YouTube or had even already read my book. It’s really great to know how much my story is impacting people. My favorite part of that day was when one doctor (who had GBS previously) talked about the importance of having a positive attitude and the importance of laughter. I have believed this my entire life, and even more so after my experience with GBS. It’s amazing what two seconds of laughter can do to your mindset. When your feeling down, surround yourself with people that can make you smile and make you laugh, and I promise it will help!

The weekend overall was fantastic. I made some new friends and had a great time with my mom!

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Since I have been home, two exciting things have happened! Even though it was a while ago, I just found out that my story was put into Spinal Columns magazine! You can read the article HERE. The other thing is that Global News was able to help promote our upcoming picnic this weekend, so information about it was aired this evening.

Our GBS/CIDP picnic that we organized is this Sunday and I am really looking forward to it. I am looking forward to seeing Kit (the man with GBS who came to visit me when I was in the hospital) as well as many others that have survived GBS or CIDP. It should be a lot of fun; on top of selling hot dogs and beverages we will also be selling balloons to be released into the air in the afternoon, which I think will be really pretty. We will also be playing some really fun games – games that will show others what it’s like to have GBS (what it’s like to be in a wheelchair, what it’s like to not have control over your hands, etc.) All the proceeds from the day will go towards the GBS/CIDP Foundation of Canada. So if you live in the Edmonton area and don’t have any plans on Sunday afternoon, please stop by Jackie Parker Park and help support a wonderful cause! I’m crossing my fingers, but its supposed to be a beautiful day!

Spring Fever

My Casey continues to grow before my eyes. We switched her from the crib to a big girl bed last weekend, and it went very smoothly. Casey has always been such a good girl, from the hours that she would lay in her bassinet in the ICU – content as can be, to the 12 hour nights she’s slept since she was a newborn – we know how lucky we are to have such a laid back child. And this switch to a full size bed proved how easy-going she is, once again. She loves her new bed, goes to sleep without any problems, stays in bed all night and sleeps great. And when I see her in her full size bed, it really makes me realize that she is no longer a baby; she is definitely a little girl.

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It’s now springtime, which means summer is coming, but you certainly can’t tell here in Alberta…the sun has been shining, but unfortunately it has still been windy and chilly, and we continue to get snow. I just can’t wait for it to be gone and for the grass to turn green already! Despite the cold weather, I have started running again and I am really enjoying it. I stopped running last October when winter hit (I wasn’t going to risk slipping on ice with how weak my ankles were) so it’s been 5 months since I’ve hit the pavement….but wow what a difference those 5 months have made. As soon as I started running, I could instantly feel just how much stronger my ankles are. It’s so much easier than last year. I’ve been running 4km but keeping my pace fairly slow, being that it has been so long, but I have been quite surprised with just how easy it is. I definitely didn’t expect it to be, but really, after Insanity, every other workout has been a breeze so I shouldn’t be that surprised.

I recently got confirmation that I will finally graduate from the University of Alberta! I finished the 2 year Human Resource Management program at the U of A back in 2010 when I was pregnant with Casey, and I was supposed to graduate in June of 2011. But I was still in the hospital with GBS in June 2011, so I was unable to attend my grad. After I was home and better again, I hoped to graduate in 2012, but I just missed the deadline for registering for the ceremony that year. So now, even though I have been working in HR for 5 years now, I will finally graduate and receive my Human Resources Management Certificate this upcoming June.

Next month is GBS Awareness Month, and in honor of this, my support group and I are putting on a GBS Awareness Picnic. I am very excited to be doing something like this in our city, to create even more awareness on GBS. The picnic is on May 5th at Jackie Parker Park Pavilion in Edmonton, from 1-4pm. We are going to have different activities going on, and we will also be selling balloons to release into the air together. All the proceeds from the day will go to the GBS Foundation of Canada. I am also going to bring some books and will again donate $1 from each book sold at the picnic to the Foundation. For more information, check out the event on Facebook HERE. If you unable to attend but would still like to help, we encourage you to donate to the foundation directly at www.canadahelps.org