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!

Our Casey continues to grow before our 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.

As Casey starts to get older and older, and as our friends continue to pop out more babies around us, the thought of having another child has started to cross our minds. We know that Casey would be thrilled to have someone to play with but we definitely have our reservations. I know that there is only a 5% chance that I could get GBS again, and that it might not have even been the birth that triggered it anyways -but after all we went through we can’t help but worry that it could happen again if I had another baby. I’m not sure I could go through what I did a second time. And a part of me feels guilty; that I missed out on the first five months of Casey’s life and I feel like I should spend the next 16 years of her life making it up to her. I feel like I need to give her my undivided attention, to make up for that lost time and I just wouldn’t be able to do that with another child in the house. A part of me already feels quite complete with just the three of us in our little family. But on the other hand, we know just how great it would be for Casey to grow up with a sibling. I see how happy she is when she is playing with other kids, and I remember myself how much fun I had with my brothers growing up. In the end, we know that having another child would be a blessing, whereas if we decided not to have another child, we would likely regret it. And really, both James and I have always wanted two children. So although we are not there yet, we are starting to see the possibility of another baby in our future.

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

The last few weeks have been really busy in terms of communications through my website. I have had two nursing students- one from California and one from Kentucky – whose professors have shown my YouTube video in their class. This is not the first time either; my sister in law’s teacher also showed my video to their class a few weeks ago. First of all, I am so pleased that my video is impacting these teachers enough to want to share with their students (and is even reaching people as far away as California and Kentucky). This is great awareness for Guillain-Barre, and great learning for these future nurses. Secondly, it makes me even happier to know that these students, who don’t even know someone with GBS, are that impacted by my video, that they are buying my book and reaching out to email me to tell me how I much I have inspired them.

I have also been in touch with numerous patients and family members of those dealing with GBS in the last few weeks. One lady, a young woman in New Zealand, was diagnosed just 9 weeks after the birth of her child. She has a severe case like mine and is in the ICU breathing on a tube. It brings back a lot of memories, thinking back to that time when I was so paralyzed that I couldn’t even hold my newborn Casey…but look how far I have come now, and one day she will be able to hold her child again. I’ve been in touch with her family, and they have already read my book to her. I hope that she found it comforting; knowing that there is someone out there that has gone through what she is. One of the mains reasons I wrote my book is for situations like this, and I hope it helps not only her but her family as well.

I have also been in touch with a young man in England, who posted my video on his Facebook page for others to see what he is going through. He is 26 years old, which is the same age that I was when I was diagnosed. He has just learned that he is going to be a father to his first child which is one more reason for him to fight as hard as he can to get back to his life.

This week I started Chalean Extreme, another home workout program. It’s quite a bit different than Insanity so far, which I’ll need to get used to. Chalean Extreme is more focused on weight training where Insanity is high intensity cardio. I’m used to working out at a very fast pace with a very high heart rate…where this is slower movements but with extremely heavy weights. Don’t get me wrong, it is still very difficult, just a different workout is all. I’m not able to lift all that much yet either but I know as the weeks go by I will get stronger and stronger, just like with Insanity.

Our family is headed to Golden this weekend, to go visit my cousin and his girlfriend, and we are going to hit up the ski hill on Sunday. I am so excited; it’s been over 3 years since I’ve skied and I’m looking forward to getting up on the hill again. But of course I am a little nervous; I haven’t skied since GBS so it’s hard to say how I’ll do but I’m willing to give it a try! My ankles are still weak but I am overall stronger, so hopefully that helps me.

At the end of April, my mom and I are heading to Toronto for a GBS Conference. I am really looking forward to meeting even more people that have been through what I have, to some degree. I am certainly not there to sell my book but I’m sure a few will be sold to those wanting to hear more about what I went through. And again I hope that those currently struggling with issues from GBS find my story beneficial and inspiring.

Meeting the many people that will be at the conference will remind me that although GBS is a rare disease, there is still a shocking amount of people who have had it or will get it. Thinking about some of the people I have been in contact with this past week, who are going though similar things that I did, brings back a lot of memories and I can’t help but feel terrible for them. It gives me that same feeling I felt back in ICU – that pit in the bottom of my stomach- thinking about all they are going through and all that they are going to endure over the next months- even years. They really have no idea, and there really isn’t a way to prepare them for it. But the best thing about GBS is that there is a high chance of making a full recovery. It will take time, but these people have every reason to believe that they can get their life back. And not many diseases allow for that.

For anyone that is dealing with GBS, whether it’s still in the acute stage, or you are already at home recovering, please remember this:

It may feel like you are never going to wake up from this nightmare but I assure you, one day you will. There is a light at the end of the tunnel even if you can’t see it right now. Stay positive and take each day at a time. Don’t stress about your future, just focus on getting through the challenges you are facing right now. You can deal with tomorrow’s challenges, tomorrow. You will get through this. Surround yourself with positive people that will lift you up rather than bring you down. Instead of always thinking about the things that you are unable to do, try to find things that you are able to do, that make you happy and do them every day. When I was in the ICU, the little things for me included watching the news in the morning to help ease the isolation feeling and my mom reading me my Facebook wall to lift my spirits. And when I was recuperating at home, it was spending time with friends to take my mind off of my illness. Find a hobby that you love, and do it. It’s these little things that will help you get through your days. GBS is the hardest thing you will ever face in your life. And you may not think you are strong enough to handle it, but I assure you, you are stronger than you know. And one day I promise, you will look back and see just how far you have come. I know I do, every day.

My blog today is going to be about my husband James <3 He has played such a huge role in my recovery and I wanted to dedicate a blog just to him. With all this commotion and interest in my book from the media, our friends, and strangers around the world, James tends to get left on the sidelines with everyone always wanting to hear about my side of the story. But he is definitely the unsung hero in our story and I wanted to bring some much deserved attention back to him, and officially thank him for all he’s done for me!

James and I have been together since we were 18 years old, so coming up on a decade together. It’s amazing how much we have grown and changed over the last nine and a half years. We have been through so much, including fighting through a devastating disease together. Not many people can say that. When I was diagnosed, it was a complete shock – we definitely didn’t see the “sickness” part of “in sickness and in health” happening that soon into our marriage, and our lives were changed forever. Everyone knows what I went through from reading my book and seeing my news stories, but not many people truly understand what James had to endure.

Casey was only 20 days old the night that I went into the hospital. Looking back now, thinking about how young she was, it’s hard to even comprehend that. She was so little and still so new. James was still adjusting to life as a new dad, and then all of a sudden, our lives were changed again and James had this little newborn baby to take care of by himself for months. He may not have breastfed her, but he bottle fed her every few hours. He woke up with her throughout the night to feed, comfort and rock her to sleep. He woke up early mornings with her and he changed her diaper thirty times a day. I’m sure at the end of the day he often felt like he accomplished nothing – like many new moms do. It was just the two of them at home, and Casey slept in her little bassinet right beside James every night. Like new moms, he intently watched her as she slept to make sure that she was always breathing, and like new moms he always had one ear listening for her even when he slept. He bathed her, clipped her little finger nails, and rocked her in his arms for hours on end. And he did all of this on his own. I am positive that this has given him a bond with Casey unlike most fathers and daughters. Not many men can say they’ve experienced what it’s like to be a new mom – most men head back to work a few weeks after the birth of their baby and don’t experience many of those mother- baby moments like James did.

I can only imagine the feelings James was dealing with at that time; wondering if he was going to lose his wife and be left taking care of Casey alone for the rest of his life. Or wondering how on earth he would take care of both of us should I be left in a wheelchair for the rest of our lives. It must have been very hard. But all the while that James was taking care of Casey and dealing with these feelings; he made sure to be by my bedside day after day to ensure that Casey got to know her mom. He took a leave of absence from work to take care of the both of us. And when James came in to see me at the hospital, he had a smile on his face, every single day. I often wondered how the hell he managed to keep it together. But I know now. He did what he needed to do for me. He knew that he needed to stay strong for his family, and he needed to take care of Casey.

Once I was released from the hospital four months later, James not only stayed Casey’s caregiver for another 3 months, he also then had the added responsibility of taking care of me. And a lot of people don’t realize how much work went into that. He took care of me in ways that most people will never have to take care of someone. He took on the role as caregiver to me, and both mom and dad to Casey. Even now, though I have recovered, my husband still works his ass off. I am extremely grateful and proud, that James helps out so much, including making dinner for us each and every night, waking up with Casey on the weekends, and changing most of her diapersJ. I love watching them play and the way they look at each other is priceless. He is an AMAZING daddy and Casey loves him so much.

We all know how much GBS changed me, but I have also seen my husband transform as a person from the whole experience. With him seeing firsthand how fragile life is, he has taken the chance to improve himself in many different ways. That includes spending more time with friends and family, getting out to try new things, doing more things that he loves, working out more, and generally, he really is a much happier person that is able to let go of the small things in life.

I would not have gotten to where I am today without James help. From putting chap stick on my lips and lotion on my hands in ICU to helping me use the washroom, dressing me, taking care of our daughter, and now selling books for me – he’s done it all. He is such a supporting and loving husband. And although we have been through our fair share of hard times, we know that no matter what comes our way, we will get through it. Nothing can be worse than GBS, and all that matters is that we are together.

I can’t thank James enough for being such an amazing husband and father. Casey and I love and appreciate him so very much. And anyone that knows him knows how hard he has worked and knows what a devoted husband, dad, son, friend and person he truly is. We are all very lucky to have James in our lives.