The Aftermath

My residuals from GBS and how they affect my life

It’s been 5 years since my life changing experience with Guillain-Barre syndrome. Given the severity of my case (only about 30% of GBS patients end up on a ventilator), I’m so fortunate to have recovered as well as I did, and I’m grateful that I can do all I can. I realize that I am where I am because of how hard I’ve worked (and I give myself a huge pat on the back for that), however, I’m also not ignorant to the fact that not everyone who has had GBS, is as able bodied as I am. I can push myself as much as my body allows it, and I definitely do, but I know that not everyone can. In some people’s experiences with GBS, the damage is just too severe, and their recovery is just not as complete as mine was. Some people have limitations, or have severe fatigue, and just can’t do certain things, no matter how hard they push themselves.

While I made a complete recovery from GBS, I still have some residuals that were left behind. Now some people may disagree with that statement and say that my recovery was not complete if I was left with residuals, but these things are all quite minor to me, and don’t affect my ability to live my life just as it was before. So to me, my recovery was complete.

People email and message me all the time, asking about my recovery, and I wanted to share all the different things I experience now from having GBS. Not everyone with GBS is left with these residuals, but I think a lot will be able to relate to most of these feelings, that are often hard to explain to others. These are my residuals in order of severity and how often they affect my life:

  • Neuropathy in my feet – This is probably the most common residual in GBS patients, and one that causes several different symptoms; including numbness, tingling and hypersensitivity. Neuropathy is a result of damage to the peripheral nerves, causing the nerves to incorrectly receive signals from the brain. Because of this, my feet ALWAYS feel numb and tingly, as if they are asleep. They are also extremely hypersensitive, so even the tiniest of touches are extremely painful to me. Stepping on a tiny pebble feels like I’ve stepped on the most painful piece of Lego ever; someone touching my foot with their fingertip feels like I’m being poked with a knife, and even walking on sand feels like walking on sharp rocks. I no longer enjoy pedicures, and I usually sleep with my feet outside out of the blankets, because the sheet rubbing up against them is uncomfortable. I often joke that I feel like a superhero with my superhuman ability to feel things on my feet. I also sometimes get strange sensations in them, like my foot has been electrocuted, or like a bug is crawling across them. While the numbness, tingling and hypersensitivity is constantly there and has been since GBS, the strange sensations are much more rare now. When I talk to other GBS patients, this is the residual that is brought up the most.
  • Weakness in my ankles – Another very common residual from GBS, is weakness in the ankles. Just like if you’ve rolled or sprained your ankle, they are just not as stable as before. Because of this, it’s very difficult for me to stand on the balls of my feet, I am unable to wear really high heels (although I can get away with shorter heels for short periods of time) and I have to be very careful when walking or running on uneven ground. The chance of me rolling my ankle is very high, although I have been VERY lucky and haven’t. I rarely run on grass and stick to cement. Because of that weakness, my ankles also can’t handle as much impact as they once could, and they ache and throb whenever I run on them two days in a row (which I don’t anymore). Another thing that this affects is my ability to stand for long periods of time. Standing still for more than a few minutes makes them start to ache as well, so I am usually trying to find somewhere to sit whenever I can. I can strengthen them by doing certain exercises in the gym; I just find it’s not worth the risk of hurting them, so I’ve accepted that my ankles are like this now.
  • Feeling temperature in my extremities – Another symptom of neuropathy is the way I incorrectly feel temperature in my hands and feet. In my feet, I can’t feel if they are hot or cold whatsoever. I ‘m able to walk barefoot on freezing cold snow, and put my feet in an extremely hot bath, without feeling a thing. While I am extra careful with heat (I NEVER get into a bath without feeling it with my arms first), I am pretty lazy when it comes to the cold. I can’t feel when my feet are freezing, so I rarely wear socks, and they are always as cold as ice. My family always gives me shit for never wearing socks in the winter. As for my hands, they are the opposite. While I don’t have any numbness or tingling in my hands like I do in my feet, my fingers are extremely hypersensitive to temperature. When I touch my fingers to snow, they burn for hours after as if I had frost bite. When I hold a hot coffee in my hands, they sting like I burnt myself, and the pain is severely exaggerated. That exaggeration in my hands is only with temperature, and not with touch.
  • My breathing and my voice – While this isn’t actually a residual of Guillain-Barre, it is a residual of being on a ventilator, and something that does affect me. Whether it was the breathing tube I had in my mouth for 10 days, or the tracheostomy tube I had in my throat for over 2 months, my vocal cords never came back as strong as before and I do believe that they were damaged at some point. My voice is hoarser and a lot lower than before, and my throat always feels a little scratchy; as if I am starting to get a cold. I can’t hit high notes anymore and screaming loudly is both difficult and painful. My breathing, I assume from breathing through a machine for so long, isn’t as strong as before either. Running up a flight of stairs leaves me breathless. Even though I do TONS of cardio and I can run faster than I’ve ran before, I still struggle with running for long periods of times. I usually run in short intervals because otherwise I am struggling to catch my breath.
  • Weak Hip Flexors – When you walk upstairs, you engage several different muscles, including your hip flexors (a word I learned in physio!). My hip flexors are just a little bit weaker than before, causing me to have to work a little bit harder to lift my leg when I go up stairs. I don’t notice it at all on smaller stair cases, but by the 6th or 7th step on longer ones, I can feel it getting harder, and I often catch my toe from not getting my leg high enough. This happens to me often at the gym on the Stairmaster.
  • Foot Drop – Because of the weakness in my feet leftover from GBS, I have a little bit of trouble lifting my toes up when I am walking and I have to use a little more force to lift them to ensure they don’t catch the ground. This used to be much more severe, and I used to have to wear AFOs (foot braces), but with the help of consistent exercise, they are MUCH better now. I’m almost not even aware of it anymore, except when I am tired that I find my toes dragging more often.
  • My concentration and memory – When I am having a conversation with someone, I often find myself struggling to find the word that I want to use. I will be in full conversation and know what I want to say, but I just can’t think of the word. This can be quite embarrassing in work settings, or with people I don’t know. I also lose my train of thought a lot, as my mind wanders more often, and I find my level of concentration is not where it used to be. My long term memory is still great but my short term memory is definitely lacking.
  • My balance – Partly because of my weak ankles, it is very hard for me to stand on one leg at a time. Every single time I put on pants, I have to stand with my back against a wall, or against the bed, otherwise I will lose my balance. Doing lunges and certain yoga moves is difficult for me, but I always try, and overtime it has improved.
  • Uneven strength/weakness – When my muscles regained their strength, they did not come back evenly whatsoever. Some of my muscles are much stronger on one side of my body, and although I do try to get them more even in the gym, some sides remain a lot weaker than the other, no matter what I do. My muscles also shake and vibrate whenever I exercise, as if I am pushing myself WAY too hard and they are at the point of fatigue, but they aren’t.
  • Body stiffness and muscle cramps – When I first got out of the hospital, every single time I woke up in the morning, I felt like an old man. I was so stiff and sore and felt like I had to warm up my body to be able to move around. I would also get very severe muscle cramps and charlie horses in my legs whenever I slept. With the help of regular exercise, I’ve found that both of these things have improved drastically. I still get a little sore when I sit for long periods of time, or when I haven’t worked out in a few days, but definitely not as bad as before.
  • Fatigue – I am very fortunate that I don’t deal with this as severely as some other patients, but this is one residual that I know is still there. I just don’t have the energy that I used to have (although getting older and having kids doesn’t help) and a lot of the time I would really just like to lie down. However the more active I am, the less fatigue I get, so I try to keep active every day.
  • Swallowing pills – Difficulty swallowing food and drinks can be a common problem after GBS, one that I am fortunate that I don’t deal with; however I do have problems swallowing pills. I think it has more to do with the fact that I used to have to swallow 20 pills at a time back in the hospital, and now the thought of taking one more pill in my life makes me gag! I’ve switched to gummy vitamins so I don’t have to take pills very often.
  • Weakness in my hands – probably the most minor of all my residuals, is that I find opening a water bottle or a jar requires a little more force than before. I can usually do it, but it’s more difficult, and I often just hand them off for someone else to open.
  • Aches in my feet – I left this for last because I deal with is so rarely now, but it is definitely the MOST painful of all my residuals. It’s also one of the most common residuals, and one that many GBS patients will take medication for. I call it “GBS feet”, and it is a severe, aching, throbbing pain I get from time to time in my feet. It’s caused by neuropathy, and the pain is similar to walking on your feet for way too long, but times a hundred. When I first got out of the hospital, this pain was constant and I was on a heavy dose of medication 3 times a day to lessen the severity. But at its worst, the pain was very difficult to manage and the medication didn’t really help. I spent many days lying on the couch with my feet in the air trying to take the pressure off of them, and cannabis was the only thing that I found alleviated the pain faster. Over time, the constant pain gradually went away, and I slowly came off the meds about 2 years later. Now, every few months or so, when I am overly tired or stressed, it will flare up (always at night time) and the pain is just as severe as before. I no longer take the medication (it takes several weeks to even kick in, and you must take 3 pills, 3 times a day for it to be effective) so I find that high pressure massage, rubbing them on a massage ball, lifting them high above my head, and cannabis, help. I’m very grateful to not have to deal with this often anymore.

 

I’m very fortunate that the majority of my residuals are minor and don’t affect my day to day life like some people’s do. Like I said before, some patients or doctors may say that my recovery was not complete, because I still have these weaknesses, and aches and pains. But I can walk without the help of anything, I am able to work full time, and I am able to do everything I could do before GBS (if not more), so I personally consider myself completely recovered. And I will never take that for granted and will continue doing what I am able to do.

Many people who had GBS deal with similar residuals, to varying degrees. Some residuals are more noticeable (they may have weakness and wear braces on their legs, or be in wheelchairs) but many things you wouldn’t even notice if you saw them walking down the street. But that doesn’t mean they aren’t there. Just because you can’t see someone’s pain or struggles, doesn’t mean it’s not real. Weakness, pain and fatigue can be severe after GBS, and can affect their ability to walk, to exercise, to drive, and to work. These residuals can have a very negative impact on people’s lives.

That being said, I do believe that people need to push themselves a little. Sure, I could certainly use my residuals as excuses; as reasons why I can’t exercise, but I don’t. I could have said there is no way I could exercise when I was in a wheelchair, but instead I sat in it and lifted dumbbells. When I did Insanity, I could have said I couldn’t do it because certain moves were too hard on my ankles, but instead I modified it, or did a different move. I could say that my ankles hurt when I run, so I can’t do it. Instead, I run every second day. It’s important to figure out what you are able to do, how long you can do it for, and try to push yourself a little more as time goes on! And you really have to make time for it and make it apart of your daily routine. Yes there are days I don’t want to work out, but I still do. Hell there are days that I don’t want to work out, and I DON’T, but I don’t beat myself up for it and I start over again the next day.

My residuals are a part of my life now, but I don’t let them hold me back. And neither should you. You need to figure out what you love to do, what you are able to do and DO IT! And don’t be afraid to push yourself! That’s the only way you are going to see what you are capable of!

For those of you that had GBS, do you deal with similar residuals? Are there any residuals that I didn’t mention that you deal with?

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What is CIDP?

CIDPCIDP is an illness that is often compared to Guillain-Barre, and is a term that you may have heard me use from time to time. I myself had never heard of it, until I started attending GBS conferences and found out that there was another disease out there like GBS. CIDP is a part of the GBS/CIDP Foundation; because we experience many of the same struggles, and I have several CIDP patients in my support group meetings.

CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy. It is very similar to GBS in that it is a rare disorder that affects the peripheral nervous system (the nerves that are not a part of the spinal cord or brain), and is likely caused by a reaction from the immune system. Many of the same things that can trigger GBS may also trigger CIDP, (a case of GBS can even lead to CIDP) but a cause cannot always be linked. Just like GBS, as the illness progresses and as the immune system attacks the nerves, it starts to damage the myelin sheathe around the nerve, causing weakness or paralysis.

The biggest difference between GBS and CIDP is the onset. GBS generally comes on suddenly and progresses very quickly. GBS patients generally reach their maximum weakness in less than 30 days (in most people actually 14 days). But in CIDP, muscle weakness slowly progresses over months. CIDP is often called the chronic form of Guillain-Barre. GBS is an acute illness, meaning that once you hit your maximum weakness (the plateau stage) you start to recover and it does not usually return (although it can), However, like its name states, in Chronic Inflammatory Demyelinating Polyneuropathy, the symptoms are chronic and continue, and do not usually improve unless ongoing treatment is provided. However, some people do stabilize. The initial symptoms of CIDP are similar to GBS; with tingling and weakness, slowly spreading throughout the body. However in contrast to GBS, most people will not go to a doctor for several weeks to months, because the weakness is so gradual.

Treatments for CIDP include glucocorticoid drugs (a steroid hormone) as well as IVIG and Plasmapheresis (treatments also used in Guillain-Barre) IVIG is a process that involves removing the plasma from your blood and replacing it with new plasma, and Plasmapheresis is a process that involves removing blood from your body and “cleaning” the plasma before putting it back into your body. With IVIG and Plasmapheresis, because of the chronic nature of CIDP, they are only effective for a few weeks and many people require regular treatments every couple months.

Like GBS, the severity of CIDP can range from mild to severe. Some people experience mild weakness which may not even be noticeable to others. Others experience more substantial weakness and require the use of aids (braces, canes, walkers or wheelchairs). And just likle GBS, most people have never heard of CIDP. Most doctors and nurses will never deal with a CIDP case in their entire careers. If left untreated, about 30% of CIDP will progress to wheelchair dependence, so it is extremely important to recognize the signs early on to get the proper treatment.

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What is Guillain-Barre syndrome?

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*Updated version*

I hear that all the time. People will ask me how I got the scar on my neck, or will say they heard that I had a rare disease, and ask what I had. When I tell them I had GBS, not many people will say they know what that is. Guillain-Barre syndrome is not a well-known illness at all. The first time I myself heard the words Guillain-Barre, was when I was being told I might have it. Less than 8 hours before that, I was a healthy 26 year old. It had started with a tingly finger, a pain in my neck and weakness in my legs. By the time I was at the hospital I could barely walk anymore. My neurologist told me they would need to monitor me over the next little while to see how bad I got. No big deal. I was sick, they would give me medicine and I would go home and be fine. That’s what happens at the hospital, right? Wrong. There is NO cure for Guillain-Barre syndrome.

In my book, “Happily Ever After” I told my side of the story, I explained what GBS did to me emotionally and physically over a year. I explained my feelings, my fears, the challenges I faced and the obstacles I overcame. But what I didn’t dive into as much is exactly what Guillain-Barre is. I am by no means a Doctor, but I hope that this blog helps explain it to you all a bit more.

Guillain-Barre syndrome is a disorder affecting the peripheral nervous system (the nerves that are not a part of the spinal cord or brain). GBS is caused by a reaction from the immune system. In a normal attack on our bodies, our immune system immediately starts fighting off an infection (such as a virus or bacteria). With me, my body saw an attack and my immune system started to fight it off. The problem lies within my own immune system. My immune system continued to fight when it should have stopped. It overworked and after fighting what it needed to, it then started to attack my own body. People need to be aware that you don’t catch GBS, and it is not contagious. The disorder lies within me; my immune system reacted incorrectly. Unfortunately it’s impossible to say why one persons’ body reacts this way, when thousands don’t.

So what sort of things can trigger GBS? While it’s impossible to pinpoint, (and doctors will rarely say exactly what it was) I myself have met people whose cases of GBS came on a few weeks after they had the flu, a stomach bug, a virus, during pregnancy, after giving birth and even from stress. It has also came on for others who have had surgery, a flu shot, other vaccines, an epidural, and the Zika Virus. For me, it came on shortly after I gave birth. I had also had a C-section, an epidural and then the flu a week later, so it’s hard to say exactly what it was that triggered my GBS.

As the illness starts to progress, and as the immune system begins to attack the nerves, it starts to damage the myelin sheathe around the nerve (or axon). Basically, the nerve is a wire, and the myelin sheath is the plastic coating around the wire. The nerves are then unable to transmit a signal, which causes the muscles to lose their ability to respond to commands. Essentially, weakness starts to spread throughout your body, slowly paralyzing you.

One of the very first symptoms of GBS is usually tingling and weakness, which typically starts in the hands or feet and works its way inwards. When the doctor first saw me, my arms and legs were very weak, and I no longer had any reflexes, which made him think that I had GBS. A spinal tap was done to drain fluid from my spinal column to check the protein levels, (which are very high with GBS) and it was this procedure that lead to my official diagnosis. I was very lucky that the Neurologist that saw me that night immediately had an idea of what was going on, and knew what test to complete. Unfortunately I have heard hundreds of stories of misdiagnosis, where patients go days or weeks before they finally find out what is going on.

My case ended up being quite severe – the paralysis spread to most of my body, which paralyzed my diaphragm and affected my ability to breathe on my own – so I needed to breathe through a machine for 2 ½ months. However this doesn’t always happen. Only about 30% of GBS cases require mechanical ventilation and need to be in ICU. Some people with minor GBS don’t even require hospitalization – they improve quickly, and recover within weeks. In others cases, the paralysis may be severe but only reaches as far as the waist – and the upper body remains unaffected. Either way, the majority of patients reach their weakest point around 2-3 weeks after their initial symptom- and then slowly start to recover. For me, the paralysis affected my entire body from the neck down and I did not start to recover for over 6 weeks.

Not only did it affect my nerves, it also affected my autonomic nervous system – the part of my body that controls blood pressure, heart rate, body temperature and other body functions. My blood pressure, my heart rate and body temperature were all dangerously high for a very long time which is another reason I was in ICU. Because I was paralyzed, I could not go to the washroom without the help of a catheter and many medications. And because I was hooked up to a machine to breathe, I could not talk or eat. I communicated to my family by mouthing words, and was fed through a tube in my stomach.

When a person is paralyzed in bed with GBS, it is not only physically painful, it is also very emotionally challenging. Some experience such severe pain that can be very difficult to treat. The stress of being bedridden, in pain, having other people completely take care of you, and not knowing if you are ever going to get better, can cause severe anxiety and depression. Many patients believe they are dying, or feel hopeless and wish they would die. Most GBS patients are treated with some form of anxiety medication and anti-depressants.

Although there is no cure, the myelin sheathe around the nerves do start to regrow – as long as the damage is not too severe. In minor GBS cases, re-myelination occurs and recovery is rapid. In more severe cases, the axon within the nerves is damaged and recovery depends on regeneration of the tissue. Usually, specialists say it takes an inch a month for the nerves to regrow. That is why GBS is often called Get Better Slowly. In general, the only thing that will help a patient improve is time. However there are treatments that are provided to try to help speed up recovery. The two most common treatments for GBS are IVIG and Plasmapheresis. IVIG is a process that involves removing the plasma from your blood and replacing it with new plasma (with new antibodies), and Plasmapheresis is a process that involves removing blood from your body and “cleaning” the plasma before putting it back into your body. I had both of these treatments.

The other treatment that almost all GBS patients require is physiotherapy. As the nerves start to come back and as movement is regained, the muscles in the body require intense therapy to strengthen them to a point of use again. The first thing that I had to learn how to do when I started to improve was breathing on my own. I practiced this by spending a few minutes a day off the ventilator and slowly increased it as time went on until I was breathing on my own again. Then it was my hands and arms, followed by my core and torso, then my feet and legs. Full time therapy at a rehab hospital is quite common, (as is being in a wheelchair for some time) and patients need to strengthen their muscles until they can learn how to eat with utensils, how to brush their teeth, how to pick up objects, and other day to day activities. Eventually they may be strong enough to get out of the wheelchair and learn how to walk with a cane, then walk with a walker, and then walk on their own. This timeframe typically span over the course of a few months to a few years. For me, it was about 6 months before I was walking on my own again. I have met those that it took only a week or two, and others who are still learning 7+ years later.

Although a large majority of patients do make an almost complete recovery by two years after onset, there are those that do not. About 20% of patients are left with permanent residuals. Some people are unable to write or type as their fine motor skills never return, and some require walking aids such as braces, canes, walkers and even wheelchairs. Many experience fatigue. I was always told that I would eventually recover, and I am very fortunate that I was able to get back to my life. It absolutely breaks my heart when I meet others that are still affected by GBS years later. I consider myself extremely lucky, and attribute it to my young age at the time of my diagnosis. Thankfully, my residuals are fairly minor.

Because of the fact that it was my own immune system that malfunctioned, many people, including myself, have asked: if it reacted that way in the past, can it react that way again? The answer unfortunately, is yes, there is a chance that it could happen again. But the chance of recurrence is only about 5-10%. However because of that, I have made the personal decision not to get the flu shot or other vaccines that have been linked to GBS. And with it coming on so quickly after I gave birth, I have also decided not to have any more children. Even if the chance of recurrence is extremely low, and there are no guarantees that these things could trigger it again, that risk is just not worth it to me.

Guillain-Barre is quite unknown, but it is not as rare as most people think. It effects about 1-2 in every 100,000 people a year. So in a city the size of Edmonton, Alberta, it would effect on average 10 people a year. Still, most people have never heard of GBS. Some doctors and nurses I had, had never dealt with it before and some of them did not really know how to care for me. My own family doctor has never seen a case of GBS in his whole career. As I mentioned before, many people go undiagnosed for some time because of health care professional’s lack of experience with it. It is very important to recognize the signs early on, and it’s important for our medical staff to know what they are dealing with and how to properly handle it. And I as I continue on in my life now, I can’t help but feel privileged to be able to promote awareness on Guillain-Barre syndrome. And I hope you found this post useful and will share it with others!! ❤

 

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Letting go and moving forward …Things I Learned from my divorce 

Well its official, I am now divorced. When I received the paperwork in the mail, I was overwhelmed by a lot of bittersweet feelings; feelings of loss, defeat, pain and sadness, which were then followed by feelings of release, freedom, independence and growth. Although it used to make me sad that my past went the way that it did; that I didn’t end up with the man that I loved since I was 18 years old, the man that helped me through my experience with GBS, and the father of my daughter, I know that everything ended up the way it was meant to for the both of us, and it excites me to see what the future holds. It’s been almost two and a half years since we separated, and this is the closure that I need to completely let go of that part of my life, and continue moving forward!

I receive many messages from those of you that have seen my YouTube video and read my book, and I know that people wonder how my ex and I could separate after all that we had been through together. For anyone that’s read my book, you read how marriage, babies and a family was all that I ever wanted, and how my own parents’ divorce heightened that desire to have a committed marriage for the rest of my life. When I entered into that commitment with my ex, and said my vows, I truly meant them; as I’m sure many others that have ended up where I am today, did too.

For those of you that have been through a divorce, I know you didn’t start your marriage thinking that you would end up divorced one day. But then shit happens. You can blame the breakdown of your marriage on different things, like maybe you got married young, before you really knew yourselves, or quickly, before you really knew each other. Maybe over the years you changed and grew apart, unable to gravitate back to each other before it was too late. Maybe you found that the two of you were too different, and that you wanted different things out of your relationship. Maybe as responsibilities increased, the stresses of everyday life got in the way, and you stopped showing each other love, appreciation, and respect. Maybe you never learned how to communicate with your partner, and didn’t treat each other as well as you should have. Maybe in the end, you knew that your relationship couldn’t make either of you happy anymore, and that you each deserved better.

It really doesn’t matter how you got there or who decided to end it, the fact is that the relationship is over. You couldn’t make it work anymore. And whatever you think the reasons for that may be; no matter how justified you, your ex, or the both of you together feel about the decision, it is still one of the most heartbreaking experiences you will face in your life. Whether it’s the questions or judgement you receive from others who don’t understand it, the guilt you feel for things ending the way it did, or the sadness you experience from losing someone so close to you, the pain is often overwhelming and heart crushing, and lasts for many years. But with all bad, comes good, and you will certainly learn more than you ever thought possible. These are a just a few things that I have learned from my divorce:

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Your entire world will be affected.

I once read that divorce can be compared to experiencing a death in your life, and I couldn’t agree more. But you don’t just lose your partner; you lose a huge part of yourself as well – especially when we are talking about a decade long relationship like mine.  You lose the entire life that the two of you had built together, perhaps you lose the home you shared, and some of the things you purchased together. The hopes and dreams and all the plans the two of you had made for the future are now gone. You lose your entire identity; you are no longer “the spouse of so-and-so”, you are no longer a part of the family that the two of you created together, and as woman, you may even lose the name that you identify with. Your entire routine that you have been in for years, abruptly changes. Date nights and afternoon family fun are a thing of the past, you don’t get games nights with your coupled-friends anymore, and no more Sunday dinners at the in-laws. You not only lose your spouse’s family, you lose a lot of mutual friends as well. Your circle and who you hung out with on the weekends changes. You’re sometimes excluded from mutual friends’ get-togethers, since your ex will be there; or if you are invited, you’re torn about even attending (for the exact same reason). Friendships change, conversations become awkward, some people pick sides and friends that were once a very important part of your life, drift away. You feel very alone, even with some of the best friends around you.

Your relationship with your ex will change drastically.

You have no choice but to sit back and watch as your relationship with your ex changes and deteriorates, little by little. The same person who you once called your best friend slowly becomes a stranger. This is the same person you were madly in love with at one point, and the parent of your children. You see glimpses of your old life – perhaps through a memory or a photo – and you’re reminded of what you once had together. You wonder how things ever got to this point and it sometimes makes you sad. You had gone through so much together; you had laughed with them, cried with them, and grew with them. This person was once the person you wanted to spend the rest of your life with. Now, that’s all changed. Even if and when you do get along, the conversations are cold, and you feel totally detached from one another. The connection and love is completely gone, and replaced with awkwardness, resentment, and even anger. It’s often hard to believe your ex is the same person you were once married to. And even though the two of you are much better off apart, it’s still hard to accept that this person is no longer part of your life.

You will be judged, but only because they are not in your shoes.

Even though it is (unfortunately) much more common these days, divorce is still quite frowned upon. In some religions, it’s even prohibited. My whole life I have heard people criticize others for making the decision to get divorced, saying things like, “How could they just give up so easily? If only they had tried harder to just put their differences aside to make it work. Divorce is the easy way out and they obviously didn’t take their marriage very seriously,” etc. etc. And I’ve definitely felt that same judgement the last couple years, when others have learned of my divorce . I can even admit that I myself thought those things in the past! But after going through it myself, I see things very differently.  When I look back on that time in my life and remember how hard it was for me to start over again; the disapproval and judgement I faced, the friends and family that I lost, how I gave up my home and had to learn how to survive on one income, and how I had to heartbreakingly try to explain to my daughter why mommy and daddy wouldn’t live together anymore…I definitely don’t think that divorce is the easy way out.  I certainly agree that marriage is hard work and that you have to put in as much effort as you can to repair a broken marriage, but sometimes it just can’t be done. No one sees what goes on in a relationship behind closed doors – so while outsiders may see a very happy, picture-perfect relationship and wonder how they could just give that all up – what they don’t see is all the problems that they may have actually had, and just how long and hard they may have been trying to fix them. People don’t end marriages because they don’t want try to fix them. They end them because they already tried and have come to the realization that they cannot be fixed. And contrary to what most people think, deciding to end a relationship does NOT mean that you didn’t try hard enough, or that you don’t know how to commit to a marriage, or even that you don’t love that person anymore. Sometimes it just means that deep down you know that you aren’t going to find a way to make that relationship work anymore, and it’s time to let it go and move on. If I learned anything from my experience with GBS, it’s how fragile life is, and yes, I do believe that life is too short to spend it in an unhappy relationship. Of course you need to change the things that you can first, but you also need to accept the things that you can’t change (or shouldn’t). And sometimes, in the end, separating really is the only way you can both find happiness again. Ultimately, your happiness belongs to no one but you, and nobody should be judged for doing what is best for them.

You will learn a lot about relationships.

Growing up with divorced parents, and living with a mother that was single the majority of my childhood, I never got to see what a real relationship looked like. So I have never really known what makes a relationship work, or what the most effective way to solve a conflict was, or even the difference between a healthy relationship and an unhealthy one. But now that I have gained more experience in dating and relationships (only my second as an adult), I am learning all of that. And I am now able to recognize the difference between a relationship that goes through rough patches every once in a while, and one that goes through them all the time. While all couples will go through hard times together at some point, a strong, healthy relationship will never be a roller coaster of ups and downs, year after year. High conflict relationships that are filled with toxic behaviour, anger, tears and break ups, that leave you both feeling emotionally drained over and over again, are all signs that the relationship really isn’t working. It doesn’t matter how deeply you love each other, how committed you are to making it work, how long you have been together, or how many times you kiss and make up. If the both of you do not fix your toxic relationship habits, the problems are going to continue happening over and over again. And you will eventually burn out. You will eventually find that you can’t keep repeating those patterns anymore – especially when you know your child is watching you repeat them. Your children are learning how to have a relationship from you, and I certainly didn’t want my daughter growing up believing the way we handled our problems was actually healthy.

You will do a lot of reflecting.

After surviving something as life changing as a divorce, you will feel like you have grown and learned so much. You will really figure out what you want and need in a partner, and even realize the type of partner that you want to be (and no longer want to be). Sure I can place blame on my ex for the way he treated me at times, but I know that I made my fair share of mistakes too. I know as a result of never learning how to properly communicate in a relationship, that I had my own set of behaviours that were damaging to our marriage, and that I wasn’t always the easiest person to communicate with. Divorce really forces you to take a look at yourself; to not only take responsibility for the things that you did wrong, but to really try to improve yourself so that you don’t fall into those bad habits again. I know I failed in my relationship in many ways, but I am confident now, that through the hard lessons that we learn from a divorce, that we can be better people, and we can learn how to be better partners. And even if you feel your marriage ended in heartbreak, hopefully you will never look back on your relationship as a failure, as you will always have a ton of great memories to forever look back on. For me, everything that I experienced in that relationship; the good and the bad, has shaped me into the person I am today. I have zero regrets, because the love that my ex and I shared, created our beautiful daughter, and I am grateful that she has a father who is as amazing as he is. Everything happens for a reason, and I truly believe that everything that happened brought us exactly where we were meant to end up in our lives. We have both found happiness again, which is all that I ever wanted for the both of us.

~

The last 5 years has been quite the journey for me, from becoming a mother, to my health issues, then my divorce, and now a new relationship with my wonderful boyfriend. I’ve learned so much about life, love and happiness and what is most important. The sadness, the guilt and the pain from my divorce has subsided and I feel at peace with everything that has happened. I have rebuilt my life (twice now!) and I am so lucky to have been given another chance at love; a chance to do things better this time. My relationship with Jordan has played the biggest part in my growth as a person, and the time I have spent with him has truly transformed my life. And I truly believe that everything that happened in our past, brought us to each other. With the both of us having been through a marriage that ended in divorce, there is a much higher level of appreciation for our relationship, which helps us to protect, respect and even work on what we have that much more. The things that we each learned from our pasts has only strengthened what we have together. Our relationship not only shows me the way that I need to be treated and loved, it is also teaching me how to really treat and love someone in return. And along with his love and support, and the love and support from my family and friends, I feel emotionally stronger than I have felt in my entire life. I’m healthy and happy, and am definitely ready to let go and move forward.

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Thank you !!!

Wow! I can’t even begin to thank you all for the love I’ve gotten this past week. The last 6 days have been quite a whirlwind, as my 4 year old YouTube video went viral last weekend, hitting over 1.6 million views in a week; all because of a short article that littlethings.com did on me! They had emailed me a few weeks ago asking for permission to share my story on their page, and I said of course, not really thinking much about it, and having no idea how much attention that article would get! I have seen that article so many times on different media outlets and all over my newsfeed, and as a result I have been glued to my IPhone the past few days…The unbelievable amount of messages and emails I have received has been absolutely overwhelming!

I have shared my story so many times now, that to be honest I have become a little numb to it. Don’t get me wrong, what I went through was very devastating to me, it’s just that I can talk about it with very little pain now. That experience is such big part of my life that it almost feels normal to me. It was so long ago that it’s almost as if it never happened, especially since it has not affected my ability to do day to day things. (Except to wear high heels, which still makes me sad!) I talk about my journey with GBS like it’s no big deal, but really, it is. I forget that what I went though is rare and that many people will never experience something like that in their whole lives.

I watched my video again this week, the first time in a very, very long time and I have to say I am feeling pretty proud of myself. The video is a great reminder of everything that I went through and more importantly, everything that I have accomplished. I can tell by the look on my face just how depressed I was those first three months, and it reminds me of how badly I wanted to give up – but I didn’t, and I couldn’t help but smile when I was doing those INSANITY workouts at the end. I have come such a long way from that fragile and defeated person I was in ICU and I am so much stronger, both physically and mentally, than the person I was back then, and I am grateful to be where I am now.

A lot has changed since I first posted that video, the most obvious being that I am now separated from my ex-husband and in a new relationship, so of course the parts with James in it are a little hard for me to watch. And I know from the messages and comments that I receive, that there are many people out there who are surprised and disappointed, that after all of that, we are not together anymore. I get it; we were together for 10 ½ years, and even though it’s been over two years since we separated, it’s sometimes even hard for me to grasp. But in the end, everything turned out the way it was supposed to, and we are much happier apart. While what we went through should have made us stronger, it instead just helped to expose and magnify all of the different problems in our relationship. Our relationship had changed, and as time went on, it was clear that we wanted different things and that our problems could never be fixed. I will always care about him, I have just learned now that you don’t have to be with someone in order to keeping loving them; you can still love them from afar – and sometimes that’s what’s best. We have both moved on and things are good. We may not be together anymore, but that doesn’t change what we went through, and I will forever be thankful to James for helping me through one of the hardest times in my life. And just because we aren’t together, doesn’t make my story any less of a happy ending, as I am just living a different version now. Life rarely goes according to plan and always has its ups and downs; and when bad things happen, I have the choice to either let it define me, let it destroy me, or I can let it guide me into being a better person – which is exactly what I have done.

Casey will always be the shining star of my video and the majority of the questions I get are about her. She is doing great; she is now almost 5 years old, and just started Kindergarten this year. She is turning into such a beautiful little girl and what I went through has really made me appreciate her in a way I don’t think I would have had we not gone through what we did together. She is aware of what we as a family went through- she has watched my video many times, and knows that mommy was very sick in the hospital shortly after she was born. She knows that she spent a lot of time on a boppy pillow on my bed, and on a pillow on the tray of my wheelchair, and knows that mommy had to learn how to walk again. And I hope that as she gets older, she starts to understand all that I accomplished, and that it teaches her that with strength and determination, she as well can conquer things that she may think she can’t.  Casey is the love of my life and bring so much joy and happiness to those around her, and has won the hearts of so many people around the world.


I have been in my relationship with Jordan for over a year now and this relationship has been one of the best things to happen to me. My experience with GBS changed me drastically, and forced me to re-evaluate a lot of things in my life, and over the years I have been making changes in order to be the best version of myself. I have worked extremely hard to give myself the life that I want, and have found that since I met Jordan, it has been ten times easier for me to do that. He is the most confident person I have ever met, and he has taught me so much about doing what makes me happy, and not worrying what other people think; which is often hard for me to do. He has taught me that happiness is the most important thing in life, and he is one of the happiest and most caring people I have ever had the privilege of knowing. Jordan has two kids, and is such an involved father, and has taught me so much about how to be the best parent that I can be. Although he has never been through a near death experience, his attitude towards life seems like he has – he is constantly trying to live his life to the fullest and has this amazing ability to let the small things go, because he knows it really doesn’t matter. And he inspires me to do the same. We recently blended our families and moved in together, and although it took a few weeks to adjust, the kids have amalgamated very well and really love their time together. And since I have made the decision that I will not have more children due to the risk of having GBS again, I am grateful that Jordan and his kids have given Casey the ability to grow up with other children in her life. Between my life and his life, we are busier than I ever thought possible, but I wouldn’t have it any other way. At the end of the day, I know that we lived it to the fullest and we are giving our kids the best life that we can.

 
 One thing that Jordan has helped me continue on with, is my fitness. He loves to work out as much as I do, so on the weeks we don’t have our kids, we are usually at the gym every day. It’s become something really fun that we get to do together. He pushes me harder than I can ever push myself, which is always a bonus! Last year for my GBS anniversary, we went indoor rock climbing and I could not believe how well I did. I couldn’t have done it without him pushing me and cheering me on, and he has proved to be one of my biggest supporters and motivators. I have more muscle than I’ve had in my life, but that’s not the only reason why I work out; I have found that it has given me so much more energy and makes me so much happier. Working out has got to be one of the best forms of stress relief, and I don’t think I have ever walked out of the gym in a bad mood. Of course I still have my days when I struggle to find the motivation to work out, but I have found that thinking about all the people that I have met with GBS in wheelchairs; that wish they could exercise the way that I can, is always a good push for me to go. I know I am fortunate to be able to do what I can do.

I continue doing whatever I can to create awareness for GBS – I have been to two GBS conferences this past year; one in Toronto and one in Calgary, and it’s always amazing to meet others who have overcome this devastating disease. Just knowing that I am not the only one to go through what I did has helped me drastically over the years. And then meeting people who have told me that I am the reason they got through their experience with GBS, is a feeling I can’t even begin to describe. A few weeks ago I shared my story at a Women’s Conference, and this evening I will be sharing it with some Beachbody Coaches, the program that created INSANITY. I feel incredibly blessed to have been given so much exposure lately, and to have the capacity to share and inspire others around the world in all the ways that I have. Thank you everyone so much for all the love and support.

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Tough times don’t last. Tough people do. 

   
Our health is one of those things that we all take for granted. You would think after everything I’ve been through, I would remember that. The last few weeks have been extremely stressful for me, as I watched a few tiny white marks on my shoulders quickly spread into several large white spots down my back and arms. Having no idea what was happening to me and after googling some of the different things it could be, I quickly assumed the worst. The different diseases I found online did not look very good. I tried not to worry until I spoke to my doctor, but flashbacks of me sitting in emerge being diagnosed with my last serious disease, made it really hard for me to stay positive. I had been completely confident that I would be fine back when I was diagnosed with GBS in 2011, and remember thinking I would be home in a day or two…and then I didn’t come home for 5 months. So this time around, I have been much more pessimistic that it was nothing.

Of course the one time I can’t get an appointment with my doctor for a week, had to be now. I couldn’t live with that fear for a whole week, so I decided to stop at a medi-centre on my way home from work. Memories of me being in that exact same medi-centre 4 ½ year ago came flowing back, and my fears and worries only worsened as I sat there waiting. My symptoms weren’t viewed as serious at all, so one after another, people got in before I did. As I sat crying to myself for almost 2 hours in the waiting room, I remembered how the last time I was there, the medi-centre doctor had told me I had a pinched nerve and sent me home. Less than 3 days later I was in ICU breathing on a ventilator fighting for my life. I suddenly decided I didn’t want their opinion anyways, and left. These were medi-centre doctors, used to treating cold and flus and minor emergencies, not skin conditions. Whatever they were going to tell me was wrong with me, wasn’t going to ease my worries if I couldn’t trust them.

So I chose to wait as patiently as possible for a week to see my doctor. I tried to prepare myself for the worst possible scenario and tried to imagine what my life would be like if it were some serious disease again. I cried a lot, especially when I found a new spot on my stomach.

Thankfully, my doctor thinks he knows what I have and it’s nothing serious; however, he believes I have a skin disease called Tinea Versicolor. It is a fungal infection that interferes with the pigment in your skin, resulting in discolored spots and patches. Because I am so dark skinned, these spots are extremely obvious on me. It is a disease commonly found in tropical areas of the world with high humidity, and given that I noticed the first white patch shortly after my trip to the Caribbean earlier this year, my doctor thinks that I likely developed it there. I have been given a medication to help control it and it should calm down in the next few weeks, but the pigment in my skin probably won’t return for several months. And unfortunately it is a disease, so it’s something I will likely deal with again and again, especially in summer months when it’s humid outside. And the spots will likely continue to return.

It’s hard to predict if it will progress any further right now or if I will be able to control it before it spreads. And it’s hard to predict what sort of things might aggravate it down the road. But reading about all the different lifestyle changes some people have had to make, like having to switch beauty products, avoiding exercise, changing their diets, staying out of the sun, etc., has been a little discouraging.

My first reaction was relief, that it wasn’t something serious. I’m not going to die, I won’t get sick, and it’s not painful or contagious. Things could be so much worse. But then my feelings of relief changed to anger. No, I’m not going to suffer physically at all, but it’s really fucking ugly and is already having a huge effect on my self-confidence. I would really like to be able to wear a dress or a tank top again one day without feeling like a fucking Dalmatian! And I don’t want to have to change my diet, stop going to the gym, and stay out of the sun !! And for this to be happening to ME?? Haven’t I gone through enough hell? Why should I have to deal with yet another disease in my lifetime!! Its total bullshit!! Every time I look down at my body I just want to cry. I have enough scars as it is, I don’t need anything else for people to look at. And even though I completely believe that beauty is skin deep, and that what really matters is who you are on the inside, it doesn’t mean I don’t want to still look normal.

However I do know that things always get better and I will come to terms with all of this. It’s really not the end of world and there are so much worse things I could be complaining about. I recently came back from a GBS Conference where I was surrounded by strong people that have been through so much, and it really reminded me that it’s not the situation that controls us, it’s how we choose to react to it. I will hopefully get this under control and if not, well, I will figure out how to live with it, just like I did with all the other imperfections on my body. Knowing what I have overcome in the past has given me the ability to handle anything life throws at me, and I know that I need to just breathe, and take things one day at a time. I am one of the strongest people that I know, and this is nothing compared to what I’ve been through. I totally got this🙂

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Life is short…

There seems to be a lot of sorrow going on in my inner and outer circle of friends right now. In the last few months, I have seen (either in person or over Facebook) so many people dealing with some sort of major suffering in their lives; from diagnoses of diseases, to car accidents, to heart attacks, etc., which have often resulted in losing someone they love. The last week or so has been the worst, and a lot of devastating things have happened to people that I care about.


Hearing about all these tragic circumstances have really reminded me just how precious life really is. People say this time and time again, but it is really is so important to live your life to the fullest. Life is so unpredictable and things can change at any moment. It is so important to go after your goals, to be the person you want to be, to do the things you want to do. It is so important to live the life you have dreamed about, and if you don’t like something, change it! Love with all of your heart, mend broken friendships, and be a better person, friend, partner, parent, etc.

Thinking about all the different things I am seeing people struggling with right now has really brought me back to my experience with GBS. It’s been 4 years now since that time in my life and I almost can’t believe it even happened; it seems so long ago. But it did happen and I can’t believe how much it did change me. Reading through my past blog posts really shows me just how much I got out of my experience with GBS and I really hope that when others read through them, especially those going through a hard time, they get something out of it as well. 

Here are a few passages from past blog posts that I wanted to repost; some things that I have written in the past that really ring true to me, and might for those people experiencing pain as well:


“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 manage 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.


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 am faced with, which really helps me to live my life to the fullest.


And you don’t have to do what I did – wait until you get some terrible disease to start living like this. Now is the time to be that amazing person you have always wanted to be. Now is the time to be happy. I had my entire life taken away from me for months, and then…I was given it all back. You can’t imagine what that feels like – to think your life is over, and then one day you realize that it isn’t. That is a feeling I wish you could all experience, because it gives you a sense of appreciation like no other. And one day I hope you get the chance, to live like you were dying.”

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Posted in 2015 | 6 Comments