I run because I CAN.

Yesterday was such an incredible day at the NERD run. We beat our goal and raised over $2500 for the GBS foundation and for peripheral nerve research at the NMHI. I ran over 5 km in about 28 minutes, which was me best time I have EVER ran.

Thank you Global News and City News for sharing our stories, it is such great awareness for Guillain Barre Syndrome.  Thank you to my fellow GBS survivors Kit and Jenny, and my bf Jordan and stepddad Dennis, for doing the run with me. And thank you to everyone that donated!! I am feeling so proud and my heart is so full!

 

~

“I run for Guillain Barre Sundrome. I run for the funding needed to learn more about about this rare disease. I run for the research needed to one day find a cure. I run for the families that are impacted by this devastating illness. I run for those whose lives were tragically taken from complications from GBS. I run for the survivors that are left with residuals and weakness, and can longer run. I run for the survivors that are left with disabilities, that can no longer walk. I run because I am so fortunate that I can.”

-Holly

 

 

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Posted in 2017 | Leave a comment

NERD RUN for neurology and peripheral nerve research.

Hey everyone! I need your support to help raise some money for GBS! Myself and my team are running 5 kms each this upcoming Saturday in the NERD run, a fundraising event that raises money for the Neuroscience and Mental Health Institute. The GBS Foundation has partnered with NHMI, and their research can potentially teach us even more about Guillain Barre syndrome. 80% of the money we raise on our team will be donated to the GBS foundation and 20% to the NMHI in support of neurology and peripheral nerve research. It would mean so much to me if you could please help us reach our fundraising goal! Click the link below to donate, every little bit counts!

https://www.canadahelps.org/en/charities/gbscidp-foundation-of-canada/NERD/

 

 

Posted in 2017 | Leave a comment

“Life is short, but my heels shouldn’t be” – How I strengthened my ankles after GBS and got back into high heels.

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If you were to walk into a room full of GBS survivors, you would see people of all different abilities. Many of them would be walking around appearing completely ‘normal’, as if they’d never had GBS; some may be wearing arm or leg braces, some using canes or walkers, and some may be in wheelchairs. Unfortunately about 30% of GBS survivors are left with a lack of strength and balance, and need assistance with walking. The one thing that I notice right away (because this is how my mind works), is that there is almost never anyone wearing high heels. Our feet are usually the last part of our body to regain strength after paralysis, and most of the time our ankles remain the weakest part of our body – limiting many of us from wearing high heels anymore. And one of the most common questions I get from women who had GBS that reach out to me, is “WHAT can I do to strengthen my ankles, so that I can get back into heels!?!

Trust me ladies, I feel your pain. Not being able to wear high heels was one of the hardest things for me to accept about my recovery. Partly because I had worked so hard to get to where I was – not only could I do everything I had done before GBS, I was even stronger in a lot of areas. So it was frustrating to see progress everywhere else in my body, expect in my ankles. But mostly, it was hard for me not being able to wear them, because I felt like I was still missing a piece of myself that I lost from GBS. Now please bear with me, I know that not being able to wear high heels is a minor thing to be complaining about. I am grateful that I’ve had such an incredible recovery and can do all that I am able to. But wearing high heels really was a huge part of who I was as person.

I STILL remember the first pair of heels I bought when I was 11 years old. They were a black pair of round toed Mary Janes, and were honestly about 3 inches high. I wore them the entire day around the house when I got home from getting them, and was an instant pro. I felt like a million bucks. Over the years as I grew into an adult, I wore heels more and more. When I put on a pair of heels – as many women can relate – I felt transformed: physically and emotionally. They made me feel feminine, beautiful and sexy. I never felt more confident than when I was in a pair of stilettos and I rarely left my house without wearing a pair. Other than running shoes or flip flops, I can’t even remember a pair of flats that I owned prior to GBS – I even wore 3 inch heels when I was 9 months pregnant! So not being strong enough to wear them anymore after going through GBS, really made me feel like I wasn’t “me” anymore.

During the first year and a half of my recovery, my focus was on improving the overall strength in my legs. I had to work on simple things, like how to squat down to pick up objects, how to get down on the floor with Casey, (AND even harder, how to get back up), how to lift my toes up when I walked so they didn’t catch on the ground, how to lift my legs up when I went up stairs, and even how to walk in flip flops. Walking in high heels really was the least of my worries, or my focus.

But as time went on, the thought of wearing them again slowly crept into my thoughts. I am 5”7 and used to wear 3 inch heels, so after GBS, I would constantly hear from people that they couldn’t believe how much shorter I was now. I would stare at my collection of heels in my basement that were collecting dust, and my heart would break. Yes, wearing heels truly made me HAPPY! I NEEDED to do SOMETHING in hopes of wearing them again, even if that meant just wearing little kitten heels! So I started working on strengthening my legs and ankles.

If you have recovered, but still aren’t able to wear heels, here are some great things to get started:

Start running. Getting your feet up and off the ground is a great overall exercise to strengthen your legs and ankles. If this isn’t something you are able to do yet, just start with intervals. If that means you only run for 10, or 20 or 30 seconds at a time, and break for a minute or two, so be it! Anything is helpful. For a good three or four years I only ever did intervals of one minute of running and one minute of walking until I was more comfortable running more. And be sure to give your ankles a break afterwards – still to this day I NEVER run on a treadmill two days in a row. You need to give your ankles a break from that hard impact you get from running, so instead alternate with a stepper or elliptical or other low impact equipment.

A step machine is much less impact than running, but also gets your foot pushing off the ankle. To step it up a notch, try stepping using your tippy toes.

You also need to get your foot used to being up in that “high heel” position. Standing calf raises, and walking around holding onto a railing on your tippy toes, will help shift the weight onto the balls of of your feet. Walking along the railing at my gym standing up on my tippy toes is something I used to spend a few minutes doing at the end of all my workouts – I’m sure I looked silly doing it, but it helped SO much!!

Once you have gotten used to these exercises and start to feel stronger when you do them, introduce a very small kitten heel into your life. Start by practicing wearing them around the house a little bit at a time. Once you are comfortable doing that, incorporate them into your daily routine. Find somewhere that you can wear them routinely and safely, somewhere that doesn’t require a lot of walking, and somewhere that does not have any uneven ground. For me this was at work – I would generally only be walking to and from my car and a bit of walking around my office, and I knew the environment would be safe to do so. Over time, my ankles just started to get more and more used to them until I was completely comfortable wearing those kitten heels every day.

It was a very long time before I found the courage to try something higher. Every time I would put on an old pair of 3 inch stilettos,  it would feel unsafe. I just didn’t feel confident enough in myself to walk in them, so I gave up on trying to wear any shoe with a heel that was over an inch high. And this lasted for a few years. I would check out the shoe section in stores and would admire all the gorgous heels, and again, it would break my heart that I knew I couldn’t wear them anymore. I had gone out and bought myself a ton of cute flats and sandals that I loved, but I was stuck wearing little heels that made me feel like my grandma. And even though I had come so far, I still felt like that piece of me was missing.

In December of this past year, after thinking long and hard about my New Years Resolutions, I made the decision to put in more effort to wear the shoes I really wanted to wear. I knew that all I had to do was implement the same thing I had done with the kitten heel, only with a higher shoe. If I had done that, I could do this.

I purchased a pair of boots with a two inch block heel hoping to start there. I quickly discovered that block heels were so much better; they gave me the stability I needed – and the height I wanted. They were so much easier to walk in than stilettos, AND helped my foot get used to being in a higher heel. It wasn’t too long after wearing them a lot that I felt comfortable standing in a three inch heel again.

In January I made the decision that no matter what, I would wear heels at least 3 out of 5 work days. It could be a mix of block heels/stilettos, but they had to be over 2 inches at least. I knew that the more I practiced, the better I would be at wearing them. And my office was the safest place for me to do it.

And as the last eight months have gone on, and I have stuck my resolution, I can finally say that I am back to wearing the shoes I actually WANT to wear.

I still ALWAYS have to think about the environment I’m going to when leaving my house – if there will be uneven ground, or if I am going somewhere that requires a lot of walking, or if Im going out dancing ( or drinking!) then  I won’t usually wear high heels. Sometimes I can still be a bit wobbly from lack of balance, and I’m sure my mom cringes when she sees me rocking such high heels. I am also sure that my PT’s from the hospital would just tell me to stay off of them given my history.  But this is me we are talking about – the girl that stopped wearing my leg braces because I was determined to learn to walk without them. I am the girl that likes to push beyond my limits and I refuse to let GBS hold me back from my goals!

I hope that some of you that may have given up on wearing heels are inspired by me to give it another try. Take your time, listen to your body but push yourself a little. Start slowly and be patient – remember, it’s taken me SIX years to get to where I am today – but one day you just might look back and be proud that you tried.

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*Please remember that I am not a doctor or physical therapist, therefore it is very important that you talk to them prior to starting any sort of new activity (even high heel wearing). Given the fragile nature of our ankles we have to be very careful and pay attention to our bodies when they say stop”

Posted in 2017 | Leave a comment

I am a badass.

1The last couple months , I haven’t really been feeling like myself. A big part of it has been because of summer and a lack of having routine – which I do best with. Being in a blended family with a mixture of schedules is hard, and with the kids out of school and spending their days with several different people while we work, its made it even harder. Also, while I’ve still been getting to the gym a lot, it has been a bit less than I’m used to, and I’ve slacked big time on my nutrition (summer is hard!!). So I haven’t been feeling all that healthy. I’m definitely looking forward to getting back into a routine and schedule come September.

I have recently been working on my will and life insurance (YES this girl, who was very close to dying once in her life, did not have a will!!!), and it’s been making me feel sorta….I dunno… restless. I think putting a plan in action for my death, made me start thinking about my life, and made me wonder if I truly am living to the fullest. But, I have a loving boyfriend that is so supportive, an incredible group of family and friends, a great career that pays well, and best of all, I am healthy and ALIVE. I get to have a lot of fun in my life, and I am genuinely happy. So why was I feeling like something was missing? Why was I feeling like I could do MORE?

And HOW? My life is crazy enough as it is, how could I possibly fit anything else into my schedule. Work is crazy busy, life is crazy busy, and dealing with fatigue from this damn illness leaves me completely exhausted by the end of the day as it is.

Without really knowing where to start,  I  decided to deactivate my Facebook account. I still have my public business profile, just not a personal account anymore- so no more newsfeed. I was spending hours of my day scrolling through it, yet I was completely tired of the drama and negativity, and was getting nothing out of it. I knew it was playing a huge part of my dissatisfaction, because in my heart I know there are much more fulfilling things I could be doing with my time than go on Facebook. 

It was a good start, and while I feel great being FB free now, it didn’t cure my feeling of restlessness.  I still wasn’t quite sure what to do next.

It’s funny how things can happen at just the right time in our lives. Following a vacation with the kids that left me more stressed than when we left (I guess that’s why they say it really isn’t a vacation when you have three kids lol), I went for a coffee over at my girlfriends. This friend is the woman who is always bubbly, she is always positive and she always puts me in a good mood when I’m with her. She is also the type of person that is always working on herself and reading self development books, so when I was there, I thought maybe she might have a book that I could read. 

I skimmed through her books and randomly decided to take one called “You are a badass – How to stop doubting your greatness and living an awesome life” by Jen Sincero. I didn’t really know what it was about (and I personally didn’t think I was living with self doubt) but I did like the rest of the title so I grabbed it. 

I started reading it later that night, and within a few pages of reading, I was hooked. It completely changed my mindset about my life almost immediately and energized me in a way that I hadn’t felt in a while.

Without giving too much away in the book, I will just say that it’s a great starter book if you are looking to start doing self development.  And a great reminder for those of us that have been doing it for a while. It really focuses on the importance of mindset and going after what you want in life.

It’s reminded me that we need to do things that make us HAPPY. We need to do things that ENERGIZE us; things that we FANTASIZE about doing. We need to stop saying we want to do something in our lives, and go for it now. I cant count how many times I have thought about doing something, but then never followed through. As someone who went through a near death experience in my twenties, I  already KNOW the importance of all this.

But now I know that I need to do it more. Life is so short and can change at any minute. We have to go after our goals now not later. We have to think about all the different things that we want out of life, and then start making them happen.

One of the things that I have been saying for years, is how much I love writing. But that I just don’t have the time to do it. Yet it’s something that makes me happy,  it energizes me, and it’s something that I fantasize about doing…so why am I not doing it?! I have an average of 20,000 vistors a year to my website – so why wouldn’t I make the time and write more on it! It seems like a no brainer to me.  So starting to blog more often is something I’m going to commit to doing.

One of the other things that I know I love doing, is connecting with others with GBS, and supporting them in any way that I can. For the past 4 years or so I have been volunteering with the GBS Foundation of Canada, and its always something that has given me a huge sense of purpose. When I get a chance to talk with others and share my story, I feel like I have truly made a difference in people’s lives. But I have always wanted to do more, but again just didn’t know how. So to expand on that I have decided to start donating a portion of my book sales to those affected by GBS. In the past I have donated it to the GBS Foundation directly, but I personally feel that I could make more of an impact if I gave it to someone specifically. The effects of GBS can be financially devastating, from being off work, to your family being off work to support you, plus the medical costs,  the physio costs, the wheelchairs, the walkers, etc, etc – the list can go on and on – especially if you are left with permanent disabilities. I was fortunate that my friends threw my family a fundraiser, and with the help of local media, donations were raised so that we did not have to struggle. And that is something that I want to do for others as well. It’s something that I know will energize my soul.

My plan is to be more active on my site and on social media to connect with you all, because that’s what makes me happy. I’m really looking forward to having more of a presence on here and hope that I can share my story again and again and reach more people around the world. Because in the end, why I made my video and wrote my book, was to make an impact on others. And I believe that is my purpose in life, and why I got GBS.

I’m so glad that I read that book. It’s reminded me that I am a badass, and that with the right tools, we really can have the life that we want if we put in the effort.

If you are feeling lost or confused or restless, don’t sit around sulking and doing nothing about it. You are in control of your life – go after the things that you know are going to make you happy !!!

 

Posted in 2017 | Leave a comment

Tips for families of those recently diagnosed with Guillain-Barré syndrome. 

I receive so many emails from concerned family members of people that have been diagnosed with GBS, pleading for me to give them advice on how to deal with this. I experienced firsthand what their family has gone through; my family was in the exact same position at one point. And we were desperate for any kind of suggestions to help us all cope. So I completely understand why so many people reach out to me.

Suddenly being diagnosed with GBS, and not understanding the disease and what was happening to me, was absolutely terrifying for me and my family. And that acute stage in the hospital was the most challenging part of GBS by far. Not only was I in severe pain, I thought I was dying. I was dealing with severe anxiety and depression and barely had the will to go on each day. But after I had recovered and wrote my book, I was able to really dissect my experience with GBS and see what sort of things helped me and my family during that time. These suggestions may not help everyone, because every person and case is unique, but they really did make a difference for me. And I hope that providing some suggestions can help those going through it now. I hope that sharing these will give you even a bit of strength when you need it the most.

The NUMBER ONE most important thing you need to know is that GBS is an acute disease, meaning that once the patient reaches their absolute worst, they WILL start to recover. In general, symptoms will get worse for two to four weeks before they start stabilize (for me it was actually 6 weeks), but they WILL start to improve. And not only do YOU need to remember this, the patient needs to be told this EVERY. SINGLE. DAY – if not A HUNRED times a day. They WILL get better. There is every reason to believe that they can get out of the hospital one day and back to their life again. But it is going to take time….a really long time. I’m talking weeks or months before you see much improvement. And that will be the hardest part for both families and patients– the paralysis of the body, waiting for something to move again. But it will come. They will hit their plateau and very slowly, things will start to improve. That’s why they call GBS- “Getter Better Slowly”. So remind them of this. Remind them constantly that they WILL get better; it’s just going to take time. Stay positive, don’t lose hope and don’t ever give up.

Nerve pain will likely (but not always) be the hardest thing to get a handle on. It is a severe pain that will be felt throughout the entire body because the nerves are inflamed, and I will be honest, it’s a pain that is so unbearable that it makes you want to die. Massages and moving positions may help alleviate the pain, but truthfully, the only thing that will really help is a narcotic or opioid. And while you may be worried about them being on such strong medications, I assure you they need it, and you need to get them it as much and as often as allowed. I was allowed top ups every hour and I would often watch the clock those last ten minutes struggling to make it to the end of the hour. The pain is very severe and needs to be dealt with, and if that means they are so drugged up they are almost sedated, then do it. And don’t be afraid to ask to try other medications. Something else may work so much better. Also, get them onto an antidepressant ASAP. Their depression will be quite severe, so be prepared for this – and antidepressant medications have been proven to help with nerve pain.

They also may be dealing with sensitivity to touch, because their nerves aren’t working properly. A slight touch of a fingertip can literally feel like a knife is cutting into their skin. For me it was all over my entire body and the most painful in my feet (could also be in the hands). I couldn’t even handle a sheet or blanket on my feet because it was too painful. So be EXTREMELY careful and use slow and gentle movements when touching their body. And you may need to say this to the nurses at times. Not everyone realizes that this can happen with GBS patients, and they aren’t always careful when touching them. As the weeks go on, you will get to know the nurses and which ones are really good at handling the situation. And you may want to talk to someone about trying to get those nurses assigned to them when possible. Having a nurse that really knew my case and how to handle my GBS, made such a difference for me. The nurses that I really connected with were the ones that were able to calm me down during panic attacks and were best at managing my pain. 

Second to pain, the depression and anxiety will be another very difficult thing to deal with. They will be in a very dark place and will feel that their life is over. There may be times that your family member asks to be taken off the ventilator because they just can’t go on anymore. You have to remember and keep reminding them that they are going to get better and that they are going to get out of this. And try to give them a reason as to why they need to carry on. For me it was my newborn baby, and my family reminded me of that every time I tried to give up. As I mentioned, get them onto an anti-depressant medication sooner rather than later, and get them an anti-anxiety medication ( like Ativan ) for when they are having severe panic attacks. These times will be very, very hard. This is when you need to be the strongest for them. 

Another important thing to remember is that other than if they are in a coma, it is likely that they can still hear everything that is being said. Even if they are lethargic, and appear like they are out of it or like they are sleeping, they can still hear you a lot of time. So talk to them!!  And tell them what is going on! I was so terrified when I was first told what I had because I had never heard of it – and they kept saying  that it was very rare. And hearing some of the nurses say they had never seen a case of GBS before only made me more terrified. For my sanity I needed to know as much as I could about what was happening to my body. It was so important to me that I be kept in the loop about everything. But I couldn’t say that at the time. So tell them about GBS and what is happening every day. Get a copy of the GBS handbook from the GBS foundation and read that to them so they can start to understand what GBS is and what it is doing to their body. Read them my book “Happily Ever After” to  help show them that someone else has been in their shoes and knows what they are feeling. And remind them again, that with GBS, they will get better.

They may be hard to watch, but check out all the different You Tube videos out there on Guillain-Barre syndrome. There are tons of videos, including my own, showing people’s experiences and recoveries. It will not only prepare you of what is to come, it will show you that there are so many people out there that have been through this and recovered – often completely.  And if you think they may want to see them, show them the videos. Some of my family members were hesitant on showing them to me because they didn’t want to scare me, but personally, I was happier that I wasn’t being left in the dark. 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. It definitely gave me hope.

If you are able to find someone that has had GBS in the past to visit them, than even better. Being diagnosed with such a rare illness that no one has heard of and doctors rarely come across is extremely isolating, and you feel like there isn’t possibly anyone that could understand what you are experienceing….so being able to meet someone else that knows what they are going through can make 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 visit them. When I first saw someone walk into my room that had severe GBS just like me, and that had recovered – it made me think that maybe, just maybe I could too. 

Another great resource is Facebook! There are several fantastic support groups on Facebook – just search Guillain Barre or GBS in the search bar and they will come up. There are thousands of active members around the world that can answer questions for you as they come up – and as things progress you will likely have many. So reach out to people who have been where you have.

If they are on a ventilator and unable to speak; communication will seem almost impossible.  So as soon as you can, write out all the letters of the alphabet on a board to spell out words. Point to the letters and have your family member move his head or blink his eyes when you get to the letters they want to use. Now remember this is going to take a very long time and will likely be frustrating for them, so it’s not something you will use a lot – but it is a tool you have. As a better alternative, try to list the common things they ask for, and write those down too. Things like, “In pain”  – to get them more meds, “Hot” if they need a cloth on their forehead ,  “Turn” if they need to be moved to a new position, etc, etc. and have them point to that word. It may also help to have them mouth words when you are trying to figure out what they are saying. Please don’t ignore them and always try to figure out what they are communicating to you, even if it is difficult.

Autonomic things – like blood pressure, body temperature, the ability to urinate/have a bowel movement, these are all things that are usually affected and are very common. While obviously these are things to pay attention to, I wouldn’t say that you need to be worried that they are happening. Doctors will provide medications to help, but these things are all very normal with GBS.

Advocate for them!  Your family member cannot talk, so you need to be their voice. And sometimes you have to push to get what you want. Don’t be afraid to ask the doctors about trying new medications, or new methods to help with their struggles. As the days go by, you will figure out what works for your family member. Yes the doctors have experience with illnesses but maybe not GBS, and even if they do, that doesn’t mean they know what works best for them. All GBS cases can be very different, so listen to what your family member is communicating to you about what they need, and be their voice to others.

Stress levels, tension and emotions will be high so it’s normal for the patient and family to often be agitated and frustrated. And you won’t always agree with what a nurse is saying or doing. But if a nurse is being flat out rude to you and it is causing anxiety to your loved one, get them out of there. Yes it’s important to remember that everyone is likely stressed and tired, but if your nurse is downright ignorant or cruel, and dealing with them is unmanageable – speak to a supervisor.  You have every right to ask to be assigned a new nurse. It is not good for the patient to be in a stressful environment.

After a week or so you will hopefully get a physiotherapist to visit, and they will show you range of motion exercises. The patient will be paralyzed and unable to move, and it can be quite painful, but it is still very important to keep those muscles and joints moving. For me, as the sensitivity in my skin decreased, it actually became something I looked forward to. It helped with muscle stiffness and aches and pains, and helped pass the time. People don’t realize how important it is for family to help move those limbs around but I’ll give you an example – my family lifted my right arm up above my head several times a day, but didn’t lift my left one as high because every time it bumped my trach, it made me throw up. Months later, when I was in physio, I couldn’t lift my left arm nearly as high, and I had to spend twice as much time on that arm rehabilitating it. Also ask for something to keep the foot from dropping – PT will likely bring in some sort of boots for the patient to wear that keep the foot locked and straight. If you don’t do this, the muscles in the feet will weaken and cause “foot drop” -which makes it more difficult to lift the toes up when learning to walk again.

Eventually they will need to be sat up in a bed and after that, they will need to be taken out of the bed and put into a sling and then into a chair (watch my video to see how that’s done). The patient will probably hate this because it will be so painful to be taken out of bed, but it is also very important. It is not good on the lungs to be constantly lying down, especially on the left side, as your heart actually puts pressure on the lungs and start to collapse it. 

Take care of them as much as you can! 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 bathe. So brush their teeth (use an electric toothbrush to make it easier and faster) wash their face at night, shampoo their hair, and put lotion on their hands and legs (if it’s not painful for them). Put lip chap on their lips and put eye drops in their eyes. 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. And it also helped pass the time and gave us something to do. Oh and for patients with long hair, get that hair brushed and then kept in a braid at all times. It will be so difficult to deal with otherwise.  

Being trapped in a bed, time is going to feel like it is going by even slower than it is for that person. Find things to do. Watch TV shows and 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.  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. 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). To brighten up the mood in their room, listen to upbeat music, and try and make them laugh!! But if they need to, let them cry. The majority of the time there will be nothing that can  cheer them up and you just have to be strong for them when they can’t be.

Take what the doctors tell you about their recovery with a grain of salt. GBS is an extremely unpredictable disease that a lot of doctors don’t even fully understand, and it’s just not possible for them to fully predict what is going to happen – even if they try. Now because they don’t want to be held liable for someone not recovering when they were told they would – they will usually give you the worst case scenario. I was told that I would not walk for at least two years and even the EMG test showed that, but then I was walking completely on my own only three months later. If a doctor tells you bad news, please don’t get discouraged. Miracles happen every day so please stay positive and hope for the best. However it is always smart to be prepared. Expect the best case scenario, but plan for the worst. Start thinking about what sort of things they may need at home if they are disabled. Sometimes people go home before they are fully recovered, so look into wheelchairs, walkers, wheelchair ramps, etc etc. on your free time.

Take it one day at a time. Don’t let the patient worry or stress about what is to come down the road. They need to focus on getting through today and that is all. As they are learning all the things they have to learn again, (like breathing on their own, lifting their hands up, eating with cutlery, and eventually 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 and it gave me panic attacks. Tell them to focus on one task at a time. They can deal with tomorrow’s struggles, tomorrow. Tell them to just focus on getting through today.

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. And constantly encourage them not to give up fighting. They will feel discouraged that things aren’t happening faster but as things improve they will slowly get stronger.

GBS will likely be the most challenging thing that your family will ever face. It’s not going to be easy, but I promise that you will come out of it stronger than before. It will be hard to see now, but you will learn so much about strength and determination, and what’s important in life. I myself look back on my experience with GBS as a blessing because it taught me how short life really is, and to live my life to the fullest. PLEASE stay strong, remember to stay positive and don’t ever give up. You will get through this. 

When I read the emails I get from people dealing with a new diagnosis of GBS, I can hear the pain and fear in their words. It breaks my heart because I understand it so well, and I truly wish I could do more to take away that pain. I hope that this article can at least help give people some tools to deal with it.

Please share with anyone you know that may be dealing with a recent GBS diagnosis. 

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It’s GBS Awareness Month!

This month is an important one to me, as I always try to bring awareness to the disease that nearly took my life 6 years ago after the birth of my daughter. Guillain Barre syndrome is a rare disease that affects about 1 out of every 100,000 people. When I was diagnosed with GBS, many of the doctors and nurses I had had never seen a case of GBS before.

So what is GBS? It is an autoimmune disorder, where your immune system attacks your nervous system, quickly paralyzing you (usually from the limbs inward). About 30% of patients will require mechanical ventilation to help them breathe (myself included) and majority of patients will need physiotherapy to teach them how to do day to day tasks again. About 5% die from complications. GBS is an acute illness, meaning that once the acute phase is over, you start to recover, but this can take months to years. Some patients don’t ever fully recover and are left using walkers or wheelchairs. So why is this month important? Because rare diseases like GBS and CIDP just don’t get the same amount of media coverage or fundraising that other diseases, like Cancer, get. It may be rare, but people still need resources and support, and there’s not much out there when a disease is rare. Also, early detection is key and getting treatment started can make all the difference in the world. It’s important to listen to your body and go to a doctor if something doesn’t feel right. I went in with a tingly finger and weak legs and was told I had a pinched nerve…72 hours later I was paralyzed in ICU where I spent three months. I was completely healthy before this, and was just 26 years old.

I’m grateful to have recovered completely but not everyone is that fortunate. In honor of GBS awareness month I ask that you please watch my video and see what GBS does to a person. And SHARE it for further GBS awareness!!! If my story inspires you to live your life to the fullest, or motivates you to donate to the GBS foundation, or helps someone else with GBS not feel so alone, then it makes what I went through all worth it. ❤️

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Happily Ever After, apart.

A year ago today my divorce was finalized, and I couldn’t be happier with how far we have come the last couple years. Our separation was far from easy, but I am very proud of the relationship that we have today. Just because you get divorced does not mean you have to hate each other, and us getting along has made life SO much easier – on everyone involved. It takes time, but it is possible to come out on the other side as friends.

I often get compliments on the way we handled our divorce, and the way that we co-parent our daughter. Our divorce was pretty smooth; we never stepped foot in a lawyer’s office, we share custody of our daughter, we split all costs for her, and we don’t do child support. We do things like her birthday party and parent teacher interviews together, we have a lot of the same friends, and we see each other often. Growing up with divorced parents that were friends made things much easier for me as a child, and it was extremely important to me after we separated, that Casey grew up with parents that got along.

For anyone going through a divorce with kids right now, the biggest piece of advice I’ve can give you (that I’ve learned from both mine and Jordan’s divorces), is to LET EACH OTHER LIVE. Each parent is going to have different parenting styles, different views, different priorities, different morals and different lifestyles, based on who they are as a person – so it’s normal to not always agree with what the other parent does. BUT if your child is happy, healthy, and safe – that’s ALL that matters. If you believe that your ex is a good parent, you have to let them live their life and trust that they are doing what they believe is best. The key to co-parenting is taking a step back and allowing each other to raise the kids how they see fit. Even if you disagree with how they do something in their home, you have to try to refrain from criticizing them, because it won’t help. You are divorced, and giving each other the respect to be a parent and make their own choices, will make things so much better between you two. And besides, kids having different experiences and learning different viewpoints is actually a good thing, and will teach them that everyone thinks differently, to be open minded, and to come up with their own views and opinions in life based on what they learn.

I know my daughter is in an extremely loving, happy and healthy home at her daddy’s, so I don’t need to know to know the fine details of his day to day to life with her. I am incredibly grateful for the relationship Casey has with her father and his girlfriend,  and the way that we all get along. James and I are happy in our own lives with our new families, which is all that I ever wanted for the both of us. Turns out we did live happily ever after, just apart.

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