Holly After GBS

Hey friends!

I am participating in a walk & roll in Calgary (Glenmore Park) on Saturday, May 12^th at 10am . This walk and roll is in honor of Laura Jean Rutherford, who was diagnosed with GBS in 2016. She is in the process of recovering, and still dealing with a lot of issues. This event is a way to raise awareness for GBS and to raise some money for the GBS foundation in support of funding and research!

If you live in the Calgary area and would like to join us, my family and I will be participating in the 5km walk – so come join our team!!! There is no registration fee to participate, but you can also donate if you’d like! The details of how to register are below.

If you are unable to attend, but would like to donate in support of our team’s walk, you can do also do so here!!

*Why are events like this important? Because rare diseases don’t get the same amount of exposure that other diseases get. It may be rare, but people still need resources and support. So please donate!!!

https://www.canadahelps.org/en/charities/gbscidp-foundation-of-canada/p2p/Calgary-Walk-n-Roll/team/team-holly-after-gbs/

I am so excited to officially share that I am going to be speaking at this year’s Patient Summit in San Diego!

Patient Summit will be on November 4th, 2018 from 8am – 1pm, the day after the GBS/CIDP Symposium in San Diego. It’s a separate event than the conference, and will be held at Marina Village in SD. This event is a place where patients can share their experiences, and its a great opportunity for us all to connect and learn from one another. I’m really looking forward to sharing my story and meeting more survivors!

To register for Patient Summit, please visit the event page on Facebook:

Patient Summit 2018

If you are looking for information on the Symposium event ( the 3 day conference from November 1-3, hosted by GBS-CIDP Foundation International) please visit the event on Facebook:

15th Biennial Symposium

As some of you may remember, I had a flare up of GBS symptoms back in October, where my body shut down and seemed to be mimicking a GBS attack. I was dealing with intense fatigue, weakness, nerve pain, brain fog, and anxiety, that was so severe I ended up spending a day at the hospital with a neurologist getting tested for Guillain Barre Syndrome again. My symptoms didn’t progress (which ruled out GBS) so I was sent home, but my symptoms stayed quite severe, and in the end, I was taken off work and spent a week at home mostly bed ridden. With complete mental and physical rest, (and a lot of B12 injections) my symptoms slowly faded, and I’ve been feeling really great ever since.

Because of my doctor’s lack of experience with GBS patients, I asked to be referred to a neurologist that specializes in Guillain- Barre, to discuss what they thought was going on with my body. (The last time I saw a neurologist was 6 years ago, as I’ve had such a good recovery and no concerns that my regular doctor hasn’t been able to handle.) My doctor didn’t see the point of me seeing a neurologist since I was feeling better now, but I pushed for the referral because I wanted a specialist’s opinion. I not only wanted to see if they had any insight as to what had happened to me, I also wanted to share my experience and show neurologists that even though some of us appear to have completely recovered – and even though the initial attack of GBS is behind us – we can still have issues, even 7 years later. My doctor did end up referring me, but unfortunately, because I hadn’t seen a neurologist for so long and because my symptoms weren’t severe anymore, it took 5 months for me to get in to see her.

I finally got in for the neurologist appointment last week, and she immediately booked me in for an EMG, a test that evaluates the electrical activity in my nerves. It tests how fast and how well my nerves send signals, and is one of the ways that doctors make a GBS diagnosis. Yes, I made a full recovery and am stronger than ever before, but she wanted to see what was going on on the inside of my body and see if my nerves have now recovered since GBS – if they haven’t it may explain my flare up. Her interest in doing the test made me extremely glad that I advocated for myself to talk to a neurologist – as I could tell that she is genuinely interested in GBS and what my results would be.

I was very nervous for the EMG, as the last time I had one was in ICU and it was extremely painful –  to the point where I was crying and screaming, and almost fainted from the pain. I have would compared the process to getting electrocuted; they basically shock your nerves to check the response. Today, being back in a hospital setting wearing those awful blue gowns that barely cover your bum, and the strong antiseptic smell of iodoform lingering in the halls, definitely brought back a lot of bad memories.

But it didn’t end up being that bad at all, probably because I’m not in the acute phase of GBS like last time, when I was so hyper sensitive that even gentle touches would have me screaming in pain. This time wasn’t like that; it just felt like when you accidently shock someone with your finger, only over and over again, and a bit stronger each time. The whole process took less than 15 minutes. And then, thankfully, the neurologist discussed the results with me immediately after.

So the bad news is, that there is significant damage to my nerves. Other than the one nerve in my wrists, every other nerve in my arms and legs have delayed responses. Some nerves are more damaged than others, with the most damage being at the bottoms of my legs. And even though I’ve regained function and am even stronger now than before, my nerves and axons are still damaged. And what’s really interesting is that this EMG test results are worse than the one back in ICU, meaning that I had significant damage occur after that.

What’s really crazy is that she said if I had been given an EMG test back in October when I was having those severe symptoms, they would have likely admitted me immediately and began treatment for GBS/CIDP. Because my nerve activity still appears as if I have GBS.

However, I clearly don’t. I’m healthy, feeling fantastic, stronger than ever, and am having VERY minimal fatigue/nerve pain these days. In fact this is probably the best I’ve felt since having GBS. The damage is likely just the permanent damage that’s left over and this is my new normal; my new baseline. My body is just no longer the same, and the EMG shows that.

My neurologist wasn’t able to really say what could have triggered my flare up back in October – it could have been something as simple as a cold or stress that triggered my nerves to react and stop working properly – causing fatigue, nerve pain, brain fog, etc. But the good news is that I now have an actual neurologist again, so if I ever have a flare up of symptoms again, I’ll be able to get in to see her for another EMG right away. The test results may not be any different, but maybe they will, and then they can compare the results. And if my symptoms are that serious again, they would even consider giving me an IVIG treatment,

Finding out that your nerves are more severely damaged than anticipated doesn’t seem like something I should be happy about, but I am. There is now supporting medical evidence as to why my body is not the same anymore. There a reason for the nerve pain, the fatigue and the brain fog.

And the best part is that I will also be going to see her for these tests annually now, to see if and how things change over time. It will be interesting to see if the damage will ever improve or if it will always stay the same.

Either way, the results really don’t mean that much to me – I will ALWAYS base my recovery on how I feel, NOT what the test results say (with the test results I have I should be hospitalized right now, and in the meantime I went to the gym today and crushed an intense hour and half leg workout just as good as someone without GBS!!) But I am happy to be seeing a neurologist again that is able to study me over time and hopefully she and others will learn even more about Guillain-Barre !! If I am able to create some conversations and bring awareness within the medical field, than even better.

If you had GBS in the past, it may be worth asking for an EMG, no matter how many years it’s been. Just to see what’s going on now in your nerves. It may not mean anything to you, but it could help doctors to understand more about what happens to our bodies post GBS. So many people do recover and move forward with their lives and don’t see a neurologist again, so they have no idea that we actually still have issues this many years later. We may be recovered, but we are certainly not the same as we were before GBS.

I am so excited to share that my story was featured in YEG Fitness Magazine!

Thank you YEG Fitness for getting to know me and my journey with GBS, and for sharing my fitness journey with your readers and followers.

To check out the article, click here.

Happy New Year everyone!!

Like most people around this time of the year, I like to reflect back on my previous  year, and start thinking about the next year ahead. And looking back on 2017 has made me feel so proud of all that I accomplished.  I conquered a lot of goals I wanted to achieve; I strengthened my ankles enough to wear 3 inch heels again, I ran my best time ever in a 5 km run, I raised a ton of money for the GBS foundation, and I climbed a freaking mountain! I also got to take my babe to Vegas, I purchased the car that I have been saving up for for three years, and I was given an award from the GBS foundation recognizing me for my passion to give back to the GBS community. And then to top it all off, I got engaged!

In the first three quarters of the year, I was killing it in the gym, macro counting, and in the best shape of my life. But in October my progress came to a screeching halt with my neurologically induced crash (my new favorite term to describe a severe flare up of residuals). While I was still going to the gym, I slowed it down a lot – I cut back drastically on cardio, I stopped pushing myself, and, I stopped tracking my food (or caring what I’ve been eating, to be honest.) My focus the past few months really has been taking it easy, and allowing myself to take a break.

I’ve been getting biweekly b12 injections from my doctor for the past month now – any time I have tried to go longer without one, the intense fatigue, nerve pain and brain fog issues have returned. I haven’t dealt with these things to this extent since my recovery from GBS 6 years ago, which makes me believe that as I get older, my residuals will probably worsen unfortunately. Given the severity of my crash back in October, I am now waiting to be referred to a neurologist that specialises in GBS, to fully understand and document what happens to us survivors, even this many years later.  One thing that I am grateful for is that the B12 injections do make such a huge difference for me, and within 48 hours of getting a shot, I feel like a whole new person again.

I’ve really been working on de-stressing my life and finding ways to take responsibilities off my plate, as working full time, being a parent, AND dealing with a flare up can be extremely overwhelming. Luckily I am so fortunate to have such an incredible fiancé (I’m enjoying calling him that now!!), who not only encourages me to rest as often as I can, but thrives on taking care of me when I’m not feeling my best. However, as he is as crazy busy as I am, online grocery shopping has become my newest obsession. It’s not about being lazy, its about using my time wisely. 2017 certainly taught me about knowing my limits, and to take break, before I break. I’ve learned that sometimes its perfectly ok, to relax, rest and do nothing. Sometimes, its perfectly ok to order your groceries online so you don’t have to leave your house!

Another huge thing I’ve found that really helps me on my bad days, is focusing on getting 3 personal tasks that day. No matter how small they are, if its just having a shower, or making a phone call, or playing a board game with my daughter, I feel accomplished knowing that I got these tasks done, especially when I’m not able to do all that much.

And the most important thing I am working on lately is GRATITUDE. Remembering that no matter what is going on in our lives, there are ALWAYS things to be grateful for. Remembering that no matter how bad of a day, month, or year you’ve had, there are always amazing times to be found.

I am so looking forward to 2018. I am looking forward to slowly pushing myself in the gym again, regaining my strength, getting back into healthier eating and enjoying life with my family😊. 2017 was a great year, but I am looking forward to putting it behind me and starting fresh for 2018!

I just read THE MOST informative article I’ve ever read about residuals after GBS, published by the New Zealand’s Nurses’ Organisation. Reading it makes me feel that our residuals have finally been recognized and documented. And it is so incredible to read an actual medical description about what happens to our nerves post GBS. I truly believe that what they describe in this article is what happened to me several weeks ago – something called a “neurologically induced crash”. It would certainly explain why I crashed so hard, why I had shortness of breath, and why my most recent neurological tests showed strong muscle strength.

Without having to read the lengthy article, these are the key points that I found fascinating:

-80% of the GBS patients studied have severe fatigue that interferes with their life post GBS. This finding is contrary to the frequent reassurance that after the initial acute phase of GBS, recovery is complete.

 -In GBS, the myelin sheath in the nerves and axons are damaged. Some of these wounds recover, but some do not. What may occur then, is the weak collateral nerves take over duties for transmitting to the nervous system. These alternate circuits have to do extra duty to replace the functions of the nerves that no longer work very well. The collateral nerves are simply not as strong or resilient.

-The nerves can no longer handle extra exertion, and when a person is stressed or doing too much, these collateral nerves are overloaded, and slow or even stop functioning. The person comes to a screeching halt and has a neurologically induced crash.

 -Others, and even those that have GBS, may think they have tired muscles, and that they will recover easily with rest. However it is not the muscles that are faulty; it is the nerves that are limiting functioning abilities. Tests for muscular strength will appear fine, for the muscles are doing all the work, and are possibly showing up even stronger than in other people. But it is the nerves that are not functioning.

 -Some of the nerves affected are essential to lung function and breathing, which may account for developing shortness of breath.

 -It is very important to listen to GBS patients. Those that have GBS are few and far between and are unique. Their bodies and nervous systems have been affected and have very unique problems and issues. The continuing pains, aches and fatigue that those who have had the disease are REAL and should not be taken lightly, dismissed, or ignored. 

This article can provide so much insight to those that don’t understand GBS and how it affects people after recovery. If you have been affected, or know someone that has been affected by GBS, please take the time to share this with your friends and family. I finally feel that we can explain to others what it is that we go through 

The full article can be read here :

https://www.thefreelibrary.com/amp/Understanding+residuals+in+Guillain-Barre+Syndrome%3A+peripheral+nerve…-a0121416904

I believe there are two ways to handle challenges – you can focus on the bad, and grumble, complain and sulk – or you can chose to see the good that can come out of it, and do something about it.

I recently applied for short term disability coverage for the time I was off work recently due to my flare up of residual symptoms from GBS. Unfortunately, that disability claim was denied. I really shouldn’t be that surprised, as most people don’t even know what GBS is, let alone understand the effects of it. I am more disappointed that they didn’t try to learn about GBS or request more information from me, they simply denied the claim. I’m sure they hoped I would just let it go. However I will not, and I will be appealing their decision. It’s not about the money whatsoever, its the fact that those of us that have had GBS suffer with long lasting effects from it, and we have every right to access disability coverage.

Most people who have had GBS suffer from some sort of residual, whether mild or severe. Many of us have to miss work due to these residuals, some have had to modify their work hours, change careers, or even completely stop working. Too many people with GBS (and even other disorders) are denied disability coverage because of the lack of understanding and knowledge of the disease. The residuals may not be obvious to others, but they DO create severe limitations, as I experienced myself last month. My hope is that every GBS survivor would fight back on declined claims, but not everyone has the energy for that. However we need to educate others so there is that better understanding, which is exactly why I am appealing.

I understand that GBS is considered “rare” because it only affects about 0.001 % of the population. But rare does NOT mean that it doesn’t exist. And just because someone may not understand it, and just because patients recover and may not be in a wheelchair anymore, doesn’t mean the residuals symptoms are not happening. This disease attacks our nerves, paralyzing our bodies for weeks, months, even years. Our bodies and our nervous systems are changed forever. It shouldn’t be that hard to understand that we would deal with some sort of lingering affects from it.

I’m used to people staring back at me with a blank look on their face, when I tell them I had a disease called GBS, because they’ve never heard of it before. I’m used to my family doctor asking ME questions about GBS, because I know much more about it then he does. I’m used to getting a look of complete shock from health professionals, when I tell them I had GBS, because its probably the first time they’ve come in contact with it since reading about it in their textbooks. However I never thought that I would be declined disability coverage, when my residuals that I deal with are the exact definition of how they define a disability.

While being denied a disability claim by an insurance company is frustrating, I chose to look at it as a great opportunity to educate them on my disease. My disease may be rare; it may not be all that understood, but it is REAL, and I will stand up for it, for myself, and for others. Spreading awareness on rare illnesses is the only way to create a more accepting and understanding world of what it is that we go through. And for that reason, I will never stop sharing my journey with this disease.