Hi everyone! It’s good to be back in this space. If you haven’t noticed I’ve had to take some time away from posting for a while. Health-wise things have been difficult and I needed to take a break. Sometimes we must admit that we can’t be superhuman and keep going. I just needed to step back and take care of myself for a little while. This meant taking time away from writing and focusing on myself. If you’re anything like me then trying to reduce the amount you are taking on isn’t always that easy. I struggle with it because I want to make a difference for those living with chronic pain. However, I can’t forget that my health has to come first.

Anyway, with that, I wanted to put up a post today just to let you know I’m still around. Life with chronic pain goes on and I take things day by day. Over the last year, there have been a lot of complications going on with my health. Sometimes even for me, it gets next to impossible to keep every medical issue straight in my head. If there was ever a time to say that my health was complex that time would be right now. When somebody asks me how things are going with my health I’m almost at a loss for words because where does one start when you have so much going on? So most of the time I end up giving people the reader’s digest version of what is going on.

With that, this is where things are at right now. Managing my CRPS/RSD has been a little more challenging as of late because my upper stimulator isn’t working and needs to be replaced. This means I’m dealing with more flare-ups and symptoms than normal. Overall however things remain managed the best I can. I do, however, notice that it’s more work than usual and I have to stay on top of things to avoid letting the flare-ups get out of control. I think I do pretty well living with a disease that sucks as much as it does!

I never thought I’d say this but life with CRPS/RSD is easier compared to other issues right now. I won’t get into the other health issues quite yet because we are still trying to figure it all out. Yes, once again I have more health concerns to tackle! Doctor’s offices and visits to the hospital for different procedures or tests seem to be taking up all kinds of time as of late. Sometimes I feel like I need a personal assistant just to keep track of all the different appointments. Quite honestly I surprise myself with how I can handle all of this. God has most definitely given me the strength to endure.

Life has to go on however in this chronic world of mine! So I’ve had to find balance and spend more time taking what I like to call “me time” to make sure that I don’t flare up and that my health stays manageable! My care plan means creating whatever I need to do to reduce stress levels and make sure that I’m listening to my body and that it’s getting what it needs. Reducing stress means taking on less at the moment! In my head that might seem simple because all I should have to do is tell myself to slow down the pace of everything. Right! However, that’s not so easy for me to do because I’m heading into a very busy time when it comes to advocating for chronic pain.

This month we celebrated CRPS Awareness Day on Nov 2 here in my home province of Saskatchewan. Along with this, the entire month of November focuses on raising awareness for chronic pain. Normally, this would mean that I’d be involved in many events that raise awareness for chronic pain. This year though things have been a bit different, and I haven’t been able to do as much because of the way things are with my health. Instead, I’ve focused more on social media and writing to get my message out.

Over the last few years, I’ve learnt that complex health conditions like mine are just that. Complex! So it makes even the most basic things that might seem easy to you hard for me. What do I mean by this? Even something as basic as a scratch or a cut can take several weeks to heal. The common cold even takes me a lot longer to shake than most other people. I think people assume that what I live with is all about chronic pain but I don’t think they understand the true scope of how my body has been affected by this disease. Trying to hit my target date of Nov 2 to get this piece out was even affected! I blame that on the brain fog that comes and goes daily!

This post is just an attempt at an update on how things are going and to get back to writing. This always has been and probably always will be something very therapeutic to me at times when I’m dealing with a lot of stress. Even when I just need to blurt something out, or feel as if there’s a huge weight on my shoulders. In the coming posts, I want to get back to just sharing things that are on my mind. Even though there is value in specific topics I also think that there’s value in speaking from the heart.

This journey has been so complex and has taken more twists and turns than that famous road in Hawaii called the Road to Hana! If you know the road I’m talking about then you get what I mean. It’s one of those roads that continually twists and turns and you never know what lies around the next corner. To make matters worse as you turned each corner you came up upon a one-lane bridge you have to pass over. At times it was hair-raising because you would turn a corner and all of a sudden come face to face with another car trying to cross the bridge. There was no backing up because of traffic behind you, and you had to almost use metal telepathy to figure out what the driver approaching or crossing the bridge in front of you was going to do.

It wasn’t until I drove the road myself that I understood just how stressful it could be. With every corner we came to, you had no choice but to be optimistic that the road on the other side of the turn was clear. I guess my point is that I choose to stay positive in those times when things are stressful and when the path doesn’t look so clear or straightforward. I can’t turn back and have to keep moving forward no matter how hard it might be.

Hi everyone I hope you’re doing well. As always I had intended on putting out a post at the beginning of January except those plans came to a screeching halt because of an unplanned surgery and Covid! The one thing I can say for sure is that my life is never boring!

At the beginning of Jan, I ran into a surgical procedure as my upper stimulator stopped working for an unknown reason. We had been trying to get it working but finally, it was decided that nothing more could be done without surgical intervention. The neurosurgeon decided that the best course of action would be to do a surgery that was less invasive first and if that didn’t work do a second surgery to follow. This involved replacing the battery with a different type of battery first, with the hope being that the simple fix would be all that it would take to get the stimulator going. The reason for this choice was that replacing the entire unit including the wire that goes into my spinal comes with several complications including a risk of paralysis.

The first surgery which happened almost two months ago wasn’t successful. So I’ll have to undergo a second surgery after all. After all my previous surgeries there’s a fair amount of scar tissue that’s been built up. This will make it much more difficult for the surgeon to run the wire to where it needs to go, as well as position the lead that delivers the stimulation. If he isn’t able to get the lead into the proper position, then it won’t deliver the stimulation to the group of nerves it needs to. As you can imagine this isn’t an easy decision for me to make, and I will have to meet with the surgeon to discuss all my options.

After several attempts at starting this post, I had to shut things down temporarily as I picked up a nasty bout of that beast Covid! It started with one of my daughters getting sick and ended up working its way through our entire family. One by one each of us in the family fell ill! I’m over it now however still dealing with some long-term symptoms that affect me every so often. Needless to say, it threw a huge wrench into meeting with the neurosurgeon and planning what the next steps are with my stimulator.

If you’d asked me if this was how I was expected the year to start I’d have told you not in the least. I have plans for different projects in the works, and I’ve been trying to put what has been a few tough years behind me. It doesn’t mean that the projects I have planned aren’t going to happen because they will! All it means is that I’m going to have to sideline them a little bit longer. Focusing on taking care of myself at this moment is what matters the most. I’ve come to understand on this journey that you have to take things day by day, and that if changes or adjustments need to be made then that’s all part of that journey.

This hasn’t always been the case, and it took a long time to accept and understand that this cycle of one step forward one step back was just all a part of managing my chronic illness. I had to come to grips with the fact that additional health issues might keep coming up, and that there might be temporary setbacks that come up along the way. Sometimes coming up against these setbacks causes us to get stuck, and as a result, our mindset or attitude can shift in a very negative way. When it shifts like this it can make it extremely hard to see any way forward. For this reason, I always have to make a conscious effort to be positive and not to get discouraged or get into my head. So I rely wholeheartedly on my faith to guide and direct me at times like these.

Accepting what’s happened over the last seventeen years has been a work in process, and isn’t one of those things where I just flip a switch and say everything is ok. There will always be moments of struggle with this diagnosis or things that come up along the way. I get asked all the time “how do you just accept everything that’s happened and just move on” from it? Often my answer surprises people because I think that they assume I just put everything in the past and move on. That I forget about everything I’ve had to go through and that I’ll never have to deal with any hardships or challenges ever again.

In no way at all am I forgetting about the things I’ve had to endure over all those years. In fact, all of those things help me draw strength and become stronger and more resilient. As I just mentioned more struggles are bound to come up as I continue on this journey. Every time, trying to bring with those struggles emotions like fear, anxiety, and even the doubt that I’ve had to experience along the way. The difference is that I’m in a better place mentally, and those emotions don’t have the same ability to gain the type of hold on me the way they once did.

When I come up against those things that try to throw us off balance I’m able to stand up against them instead of letting them knock me down. Whether we like it or not life is going to continue to throw adverse situations our way. I’m not trying to be negative but rather realistic. It also goes on to say that without faith in my life at times like these, I know I wouldn’t be able to handle the circumstances I face the way I do. My faith has been the single biggest reason that I have been able to accept and move past all the negative that this disease throws at me!

If you remember at the start of this post the second surgery that I was facing was risky and starting to cause a lot of second thoughts! Since then, I have met with the neurosurgeon and I have good news. He’s found a way to do the surgery with minimal risk and more importantly to get a new stim put in place. Now it’s just a matter of waiting until a surgery time comes available. After an in-depth discussion with my amazing neurosurgeon Dr. Beumbo I can go into this procedure confident that I’m making the right decision. There’s no doubt the year got off to a rough start but I won’t allow car trouble to stop me from getting to where I want to go. Sure, I’ve had to pull over for a few repairs to be done to this old beat-up car but I’ll be back on the road in no time!

Hi everyone! You didn’t expect to see me back so soon, did you? Well, it’s part of my effort to get back into a writing groove. I wanted to follow up with part two of Parenting with Rare quickly while things are still fresh in my head. We know that with a condition like CRPS most of us in one way or another deal with some form of brain fog. So I’m trying to get out ahead of it. If there’s one thing I’ve learnt with CRPS it’s that you take the opportunity to do things when they present themselves.

In part two I want to dive into some of the issues I faced, and how we got around or adapted them to our family. Like I had mentioned to you there were a host of things that I had to do differently when it came to raising my kids. One of the biggest adjustments was to being a stay-at-home parent. Not being able to work meant that my wife had to go back to work and this wasn’t our original plan. She was planning on being a stay-at-home mom and so when the roles were reversed it was a hard adjustment. All of a sudden I was “Mr. Mom” if you want to call it that. As much as being at home was great, I also knew that it was going to present a host of different challenges.

With my wife being at work this meant that I was on no matter what my pain levels were. Do you think a 6-month-old and a 1 1/2yr old understand pain? So we had to figure out ways to work around those days where my pain wasn’t good. This meant trying to find ways to interact and take care of my kids all the while working within the physical limitations that were placed on me by CRPS. This is where in my previous post I had mentioned that so much of the adapting that we had to do was on the fly. It took a lot of experimenting to figure out just what my limitations were going to be. Everything from how I played with the kids to how I put them to bed at night was a little bit different. What I always tried to keep at the top of my mind was that what mattered the most was spending time with them.

So, if it meant that I was sitting on a couch letting my child dress me up adding jewelry and makeup then that’s what I did. Now I know lots of you would say this is the norm with parenting but how many of you can say that your limbs that were affected by my CRPS were bedazzled as well. On the days when my pain was bad that I had to spend a lot of time laying down. In that instance, something as simple as laying on the floor beside my daughter playing with a balloon was what I had to do. I know this isn’t overly exciting but she loved it. I’d hit the balloon up into the air wait for it to come down then she’d hit it up into the air. The reality is that when I wasn’t doing well then we had to stick pretty close to home. Going out took a greater effort and had to be reserved for the good days.

When it came to going on outings with the girls, it often involved a park or somewhere that they could play as I watched over them. With my physical limitations being what they were, a park or indoor play structure of some kind was of great help to me and provided hours of entertainment. I want you to understand that when I was doing things with the kids they had to be the type of activities that required less help from me. Being so restricted in the type of things I could do with the girls, however, naturally meant that choices were going to be more limited.

Activities like riding a bike, ice skating, tobogganing, or even playing catch weren’t within my abilities. It didn’t mean they had to miss out on them but it did mean having to do them with my wife or other family and friends. It was a matter of finding different ways to give them the things they needed from us. As they’ve grown older and I’ve started to find ways to better manage my pain, it has become so much easier to do more and more with them. Although at 14yrs and 17yrs they’ve become largely independent, so finding things to do these days within my limitations isn’t very difficult. My point is that in order to make things work we had to get a little creative in how we did things. It didn’t change the memories we created or the time we spent with one another. All that was different was how we did things.

Modifying things in the way we did was able to create special memories in of itself. With my mobility issues, it was more difficult for me to put the kids to sleep than it was for my wife. So I would often sit on the couch and my wife would nestle our six-month-old in my arms where she would drift off to sleep. Once asleep my wife would come and take her out of my arms and put her down for the night. Sure there were nights that I’d put her down but we would often tag team things in this way. Whether it be so that my wife got a much-needed break, or that it afforded her the time to do something else she needed to do. What I’m saying is that we didn’t give in to the roadblocks that weren’t easy because of my CRPS. Instead, we saw them for what they were and tried to work with them the best we could.

Another trigger at the beginning of my diagnosis was noise. This wasn’t easy to get past because kids just need to be kids! Being a trigger that makes my pain worse, however, meant trying to find a way to minimize the noise I was around. I didn’t want them feeling bad so I’d often have to remove myself from those situations so that I could cope. We wanted everything to be as normal as possible. If their friends were coming over and they were going to be noisy, then my wife would usually be the one that was looking after them. This was one of the small adjustments we had to make to make things work with my chronic pain. Of course, it was still challenging and at times the girls did have to be quiet around dad. We did the best we could to find a balance in our home and I’m not going to lie it wasn’t easy. I didn’t always handle it well!

The things I’ve done in adjusting to raising our kids with CRPS aren’t necessarily going to be the same for everyone. The best piece of advice I can give you is to be prepared to make changes in everything you do in being a parent with a disability. Have an open mind in having to adapt and don’t be afraid to say “I can’t do this” or “I need help”. Communicate! Communicate! Communicate! We tend to forget that communication is such a huge component in all of this. We tend to get stuck in our heads when it comes to the illnesses we’re diagnosed with. This often causes us to crawl into our shells and the result is that we stop talking. Our spouse is our biggest supporter! I’m constantly reminded of my wedding vows and what it says in those vows. We need to think about the “in sickness and in health” part of those vows!

To those of you that might be thinking about raising a family, I say this. You might be sick but in no way does that mean that you can’t follow through with your hopes and dreams of having a family! Getting sick is just a bump in the middle of the road. Those around you are there to help you figure out how to navigate around it. Is it going to be hard and test your strength at times? Yes! However, this has been the most rewarding experience of my life and I wouldn’t give it up for anything!

As we get off to the start of a new school year if you are a parent like me you are busy with school schedules and trying to navigate all the different school activities. Then again, we are in the middle of Covid so things might be a little different wherever you are. It’s an exciting year for me as I watch my oldest daughter go through Gr.12 and graduate. It’s hard to believe that seventeen years ago all the fun began. As a parent with a rare disease, you face so many extra challenges as you try to raise these kids to adulthood. So it’s a proud moment when you can say you were able to overcome all the fears and challenges you faced when you started raising them! As any parent will tell you it’s challenging at the best of times raising children. Let alone raising them with a disability or illness of any kind.

When all of this began I was already knee-deep in diapers and baby bottles! Raising a family was already in progress so it wasn’t like there was any turning back. I had to adapt and adjust to everything as things unfolded and that made for ten times the fear in lots of ways. There was this ever-present “what if factor” I’ll call it that I had to live with. I call it that because I was constantly questioning how I was going to do the basic things that a parent does. Things like changing diapers or strapping your child into a car seat were just a few of the basic challenges I faced. With the use of only one hand and having to deal with numerous other symptoms, I had to find a way to navigate around all the different obstacles I came up against.

I know most people would say that all those adjustments are just a part of parenting, and that finding ways to adapt are all part of the norm. However, I would say that under my circumstances things are a little bit different! Those things you are constantly making adjustments for can become very frustrating. As I mentioned they often have to be made on the fly and no manual shows a person just how to make them. This just sort of becomes a way of life! You do your best to do things the way they’re supposed to be done, and if you can’t then you adapt or get someone’s help to figure out a different way. Sure sometimes it’s going to drive you crazy and frustrate you to the ends of the earth. You can’t let it stop you though because there is always going to be away.

This was a huge stumbling block for me to get past because as much as I never wanted to admit that I was letting those frustrations affect me they really were. What I’m getting at is that there were a lot of times when I would tell myself “it just isn’t possible” when it really was. Somehow I’d get all inside my head and almost defeat myself before I even tried the task I was setting out to do. You can only do that for so long! At some point like a child who’s learning to swim you just have to take the plunge and jump in. In other words, I just had to move ahead and if I failed at something, or had difficulty with it then I had to find a way to work around it. In moving forward though what that really meant was working on myself.

Being diagnosed with a rare disease and starting a family at the same is like being hit with a double whammy! It’s bad enough that your trying to figure out how to manage your illness let alone how to adapt to parenting children. So when I said before that there is a tremendous amount of fear I wasn’t kidding. It really wasn’t until I started building confidence within myself that I started to understand that I could do this parenting thing! Between an extremely supportive spouse and myself, we figured out a way to work around my CRPS. Something extremely hard to do when from one day to the next you don’t know what those days are going to look like. I really meant it when I mentioned earlier that it was working out how to adapt on the fly.

Although I faced lots of adversity at first I set out writing a new playbook on how I was going to parent based on the limitations that CRPS presented. I had to allow myself to fail at certain tasks because there were things that I just couldn’t do based on certain physical limitations. There were days where the frustrations grew so bad that I felt like a failure yet something deep within told me to keep going. That inner voice kept telling me that I had something to prove to myself. Little did I know that the real voice I was hearing was God. One obstacle at a time I proved to myself that I could do whatever it was that I needed to do. Just in a different way! Slowly the fear and the doubt started to fade away as I gained confidence in myself as I started to find ways to do the things that are required of a parent.

What I really want to stress with what I’m telling you is that it was very much a day-by-day process! There were lots of good days mixed with bad ones, and if I could give you one piece of advice it would be this. Be kind to yourself and allow yourself to fail occasionally. We’ve all heard that old saying “if at first, you don’t succeed, try, try again”. I had to live these words over and over again! Don’t give up because your persistence will eventually pay off. I know my situation may be very different from yours but the way we approach any given situation is a choice. I had to make the choice not to get frustrated and figure out different ways to do the same things everyone else does. Including giving up control of the things that I just couldn’t do! Meaning that there were just certain situations that I just couldn’t adapt to or control. So I needed to realize in those times that I had to rely on the help of others.

I had to have the grace to allow myself to fail at certain things if I wanted to be able to find a way forward. A big piece in doing that was being able to push aside my pride. After receiving a diagnosis you struggle with being able to find pieces of your identity that you’ve lost. A person’s independence is a big part of that! So in everything, you do your constantly trying to gain that back and there’s this constant internal fight that’s going on. In parenting, I had to rely heavily on my wife to do so much when all I wanted to do were these simplest of tasks. I felt guilt for the longest time because I couldn’t do the things that should have been so easy for me to do. It seemed as though that battle to be independent grew even stronger in the caring of my kids and I was really letting my pride stand in the way.

This only fueled guilt that I was feeling on the inside! I was feeling so inadequate at times in my ability when parenting my kids and I was often letting my pride stand in the way. It wasn’t until I got to break down what was going on inside of me that I realized that I needed to make some changes. One thing for certain was that I needed to deal with my pride and start accepting the help that I needed. Not only when it came to parenting my kids but at all times.

I tell people that it’s a process and that at times it’s really going to challenge and test you. For me, it was a matter of taking things day by day. Allowing myself to grow and change as I worked through some of those things that needed to be changed within me. What I really needed was to find my self-esteem again! I was so caught up in the diagnosis itself that I hadn’t looked at the obvious, which was that my identity and self-esteem had suffered a huge loss. In living with an illness like CRPS a person has to go through a grieving process. What I didn’t fully understand at the time was that I hadn’t dealt with any of this at all. We spend so much time living and managing conditions like these, that we push aside the things that keep us mentally healthy.

Once I did some work on myself I was able to get past my roadblock and build up confidence. This changed how I viewed myself as a parent living with a rare disease. I started to accept that my contributions were going to be different but every bit as valuable in how we raise this family together. In failing at something that I was trying to do when raising my kids, I finally understood that it was the by-product of living with a disease that places physical limitations on me. I stopped doubting my abilities and started embracing the fact that how I was going to parent my children were just going to be a bit different. It made it so much easier to accept the things that I couldn’t do and to ask for the help that I clearly needed. What I also saw through all of this was that there was an opportunity to turn those weaknesses or failures into positives.

This is really one of two posts because there is so much about raising my family that I look back on now and all I see is that I was able to overcome any of those doubts and fears that may have been lurking in the back of my mind. My next post will speak more about the things we had to change about how and what I had to change to raise my kids. I hope you’ll drop in on my site for part two! Remember! Having a rare disease or a chronic illness doesn’t have to define who you are or what you can do with your life!

How’s everyone doing today? As the summer draws to a close things are feeling a little more normal right now and that feels pretty good! I say that because I’m hopeful that things will continue to get better and that we’ll be able to continue to get back to a more normal way of life. Originally I’d written that in just about a month’s time I’d be heading out to the coast to see my family who I haven’t seen in a really long time. All because of this stupid pandemic called Covid!!! Well two days I returned from that trip and what an emotional trip it was. To say that seeing my family for the first time in two years was emotional would be an understatement. Although a different trip for various reasons it put everything into perspective for me.

If there’s one thing this pandemic’s taught me its to appreciate the little things in life. A simple hug from a relative or being able to go out and have a coffee with a close friend. So simple yet so important to our basic human needs. I think we take them for granted because we don’t think twice about it until they’re gone. Spending all this time during Covid unable to see my family has been what its really about to me. Who cares if I can’t go out to a restaurant for dinner! So what if I can’t go to a mall to shop. Not that I’m much of a shopper but I think you understand the point I’m trying to make. Take them away for as long as they’ve been gone and we really see there worth.

This brings me to where I was trying to go with today’s post. I know its been a while since I posted anything new. I’ve had a lot of new issues going on with my health for almost a year and its been tough to focus on writing my blog. That being said I’ve always said that it means too much to me to ever give up writing. What I want you the reader to understand is that you are every bit as important to me even though you may not know it. In sharing aspects of my story, I know that some of you have sent me emails thanking me because you can either relate to what I am going through or that it helped you in some way or another. I want you the reader to know that you help me in ways as well. In sharing your thoughts and opinions on the things that I’m writing about you help me in all kinds of ways. You just don’t hear about it from me.

What do I appreciate the most? That I’m not alone on this journey! When many of you share those experiences with me there’s something strangely comforting about it. I know that might sound strange but its about being able to identify with one another and the different shared experiences that we go through together. The level of understanding is completely different because there’s a mutual understanding about the things we live with and have to deal with. I want to be really clear that it isn’t that family and friends don’t understand. If your living within a chronic illness then it gives you the authority to speak directly to those things that your affected by. Something a person unaffected by an illness just doesn’t have the ability to do. So again, I emphasize that it isn’t that those closest to us don’t understand but its that the level of understanding is different.

When all of this started I just needed those one or two people who could identify with everything I was going through. That ability to reach out to another person with lived experience is so valuable. All because your going to have those times when the only person able to understand will be someone who is living with those same experiences. So I guess I get a little bit excited every time I meet someone that adds to that special circle of friends. I say this because it means one more person that I can bounce ideas off of, in order to better manage pain or to deal with all the other issues that tend to come up. So when I talk about not being alone on this journey what I mean is having that person or community with CRPS or chronic pain beside me that I can walk through all of this with.

How do I find inspiration? All of you who reach out or find a way to connect that’s how! When you share your positive outlooks, and the ways in which you manage to navigate through all this craziness called CRPS/RSD it helps. In those times that I might be having a tough time you help me draw inspiration or to find the encouragement that I need. So I want to extend a big THANK YOU to those of you who help me take on chronic life. Creating a circle is so important. It allows us to take on these challenges we face together not feeling so isolated and alone as we continue along the road on this journey.

I think you get the point! Connecting with others has been a vital piece of me taking on chronic life as so many of you know. So I guess I just wanted all of you to know that without you to navigate the waters these past sixteen years I wouldn’t be where I am today. That’s why this blog isn’t going anywhere! I’m not a numbers person and I certainly don’t write the things I do because of the number of people I can get to follow along with my blog. I write because I care about people being able to connect with the things I’ve had to experience. Its about sharing my story and through that trying to help those around me who are going through much of the same.

My story continues to unfold and honestly I don’t know what that next chapter is going to look like. What I can say to each of you is this. Come along for the ride so that we can encourage, inspire, and empower one another along the way. If you feel so inclined please don’t hesitate to reach out to me through the contact page of this site.

Hi everyone! I know that its been a while since my last post but a not so little thing called COVID has been beating everyone down including me! So the plans that I had to get myself back to writing had to be put on hold once again. Like everyone else I’m tired of living within my four walls and can’t wait until all of this ends. For now though I stay positive and keep pushing forward trying to navigate all of this. I’m determined to not allow COVID to rob away a platform that’s become very important to me in the advocacy work that I do.

So that means digging deep and finding a way to get a post put together today. I wanted to take on a topic topic that often causes me to simmer inside. For some reason a person living with chronic pain is suppose to look a certain way. When I tell a person that I have a rare disease that causes constant chronic pain, you’d be amazed at how often that person judges me. Believe me it happens! For so many of us living with chronic pain from across different disease spaces this is quite often a stigma that we face. If we don’t look a certain way or show the physical signs then our pain isn’t validated. I can’t tell you how many times I’ve had to explain myself to others about the pain I live with.

What is a person who suffers from chronic pain suppose to look like? I ask myself this question over and over! There seems to be this preconceived notion that a person living with chronic pain has to look a certain way. Not to mention that if you don’t look that way, then quite often you end up arguing with people to get them to believe you! It gets tiring having to explain yourself over and over again, especially when your dealing with an invisible illness that you didn’t ask for in the first place. The most obvious example one can give is in visiting a doctors office when your in need of help for your pain. Unless the reasons are clear and obvious as to what is causing the pain, then more often then not it leads to that person being judged and dismissed.

If you only knew how often I’ve been told about friends, family, or health care professionals that “they don’t look sick” and that they’ve been left to navigate their chronic pain on their own. All because they don’t necessarily present physical symptoms. Again, just what is that look suppose to be? Last I checked there wasn’t one! This is a term I’m rather sick of hearing yet little will change until people are better educated. Although the doctors office might seem to be the most obvious place we think of this happening it isn’t the only place. In fact, we also see this happening in the workplace and within peoples personal relationships. This is why I say I can’t stand the term because it has a tendency to follow you everywhere you go.

Almost everything I’m dealing with when it comes to my CRPS doesn’t exist on the surface. A person can’t see my nerve pain or the mental anguish that it causes a person diagnosed with the disease. This is but one of the many different types of rare diseases or illnesses that people live with that have symptoms that aren’t necessarily visible to the naked eye. Even if you identify illnesses like mine as “invisible illnesses” which they are, the problem is that it still won’t stop people from making the judgements that they do. Unless we do more to help people learn more about this then this will continue long into the future.

As human beings we form our beliefs and opinions based on the repetition of certain stimuli. That being the case this means that there are a number of factors that influence how and why we judge a person by their appearance. One of the biggest contributors to this is the media! We are conditioned through constant media messages of all types, that people are suppose look a certain way. This leads to all the different stereotypes that we see in our society today. All I’m trying to get to is how we get to that stigma of how a person living with chronic pain or chronic illness is suppose to look. So instead of getting to know what’s going on within a person we make a judgement based on the things we see or hear. This is wrong! Every person deserves the same respect which means we should be taking the time to find out what their story is. The bigger problem is how do we fix all of this?

In my opinion I don’t think there’s just one solution because there are so many factors influencing this. The media being just one of those factors. Not for a minute do I doubt that we can’t make an impact and influence change. What this means however is that somehow we need to change the repetition of the stimuli that people are receiving. So what does this really mean? If we take the time to talk to a person and find out the things that are really going with them then our beliefs and opinion of them changes. If the reporting in the media comes across differently, then we should hopefully see a change in how some of those reports are shaping peoples opinions.

The same goes for those in the medical community. My hope is that the more we educate and raise awareness then the more we should start seeing a shift in these opinions towards those of us living with invisible illness. There are always going to be those who will form their opinions, and unfortunately there isn’t much to be done about it. That means having grace and patience every time a person judges me. Instead of getting upset or frustrated I need to look at it as an opportunity to educate and better inform a person about my disease. I might get tired of explaining myself but I need to be understanding of the fact, that not everyone knows the story of what’s going on with my health. In no way am I saying that its right that we have to deal with this stigma, all I am saying is that we need to try and understand the reasons behind it.

I know this isn’t easy because we often want to lash out in frustration and call people out on how we’re being treated. I’ll be the first to admit that I need to be more understanding at times like these. I get angry when people judge me in this way and forget that maybe there’s a reason behind it. It presents me with the opportunity to look at my own actions and ask myself how I might best respond. I say this because it can be so easy to act before we think. So I’d be lying if I said that I’ve never said something basing it on a judgment before! Shame on me because I shouldn’t be doing it. When I really think about when I’ve acted in this way, I can easily trace it back to some of those reasons that I was talking about before.

When you really think about the fix for this, in theory it seems like it really shouldn’t be all that difficult. It isn’t as simple as a snap of the fingers though! Changing stigma like these is a massive undertaking that doesn’t just happen overnight. Things don’t change unless we start having conversations about the different challenges we face. Meaning that sometimes we need to cast aside the frustration of being stereotyped, and focus on what we do have that can influence change. What is that you might ask? YOUR STORY! Each of us has a very unique and powerful story to tell. So don’t be afraid to share it!

I would say Happy New Year everyone but seeing as we’re already a month in I guess I’ve kind of missed the boat on that! If there was ever a year that most of us would like to be done with it would be 2020. So much happened last year in our world but we need to be optimistic that the upcoming year will be better!

I had wanted to try and get a post up a while ago but I needed to take some time to myself. Last year was both mentally and physically exhausting and at times the stress got to be pretty overwhelming at times. With constant specialist appointments and procedures from one week to the next all I could do at times was hold on for the ride. Add in a couple of new diagnosis’s and this is just a year I want to put behind me! So that’s exactly what I’m doing!

As we start 2021 I’m in a good place! Although there’s still a lot of things going on with my health I’m really at peace with all this. When things started happening with my new health issues, I honestly had a difficult time trying to wrap my brain around everything. It was just one more thing! One more health issue that I didn’t need to take on. Maybe I should be saying it the other way around. One more health issue I needed to take on! How do I take on yet another issue with my health, when I’m already dealing with so much going on with it. I have to admit that there was a bit of a battle going on in my mind, and at times I found it really hard to stay positive.

Over Christmas I took time just to really try and quiet all the noise that was going on inside my head. I spent time asking God for peace and wisdom into how to move forward with all of this. Sometimes I think we have a tendency to listen to all the other stuff going on around us. We get so caught up in all of it, that we end up down a rabbit hole listening and reading into things that we really shouldn’t. There’s only one person I’m interested in hearing from in all of this and that’s God. Slowing down to do this however is sometimes so very hard. Our emotions gain a strong hold over us and we start believing in things that aren’t from God! It doesn’t matter how often I tell myself this but it can be a challenge. So I’m trying to make more of an effort just to hand things over to Him and just trust.

There’s really no other way to say it! When I hand things over to Him, there’s a peace that I gain from that. I become filled with confidence, renewed hope, and the ability to rise up against different obstacles I’m facing! Any distractions or noise that might have been swirling around in my head disappears. I really wish I could explain how as my relationship with God has grown, so to has my confidence to trust Him in any situation that I might have to deal with. This doesn’t mean that there aren’t going to be some struggles along the way. I guarantee you that there will be times when things don’t always make sense or necessarily go the way we want or expect them to. In fact, this is something I’ve had to deal with time and time again as I deal with being sick. I’ve really had to learn that my agenda isn’t necessarily the one that God has set out for me.

In dealing with my new health issues this past year, it hasn’t always been easy to accept the way things have been unfolding. I’ve really had to make an effort to stand in faith and just trust God! I’ve really been trying to focus on His word. Trying to take more opportunity to read His word and gain a better understanding of the promises that He makes us. Particularly in those moments when things aren’t necessarily going the way I want them to. I want to share one of those pieces of scripture with you:

4and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, 5who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. 6In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. 1 Peter 4-7 (NIV)

or

4and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. 5And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.

6 So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. 7These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold – though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world. 1 Peter 4-7 (NLT)

I really think this is a perfect piece of scripture because it lays things out very clearly. I know it does for me anyway! Its pretty black and white to me when I read this. I’ll leave you to choose what to make of this. All I’m doing is presenting you with what I know and believe to be the truth. That being said what I think is most important in all of this is standing firm in belief of those promises that He makes to each and every one of us.

My point is this! When I’m feeling overwhelmed or lost in a situation the bottom line is that I have to trust that God can and will provide. Trusting will lead to increased faith, and as my faith grows stronger so to will my belief for even greater provisions. Trust and faith are a package deal in all of this, and as they both grow so to will a deeper relationship with God. Earlier in the post I mentioned that I was in a better place. Its because I’m pushing into my relationship with Him, and with that I can restore calm and peace during those trying times.

Are you in the middle of storm that has you shaken and feeling like your worlds been turned upside down? In the midst of that storm you aren’t alone and God is with you and cares about you. Another piece of scripture that comes to mind is this:

6Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6 (NIV)

or

6Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus. Philippians 4:6-7 (NLT)

Lastly, I want to conclude with this! The best thing you can do is pray. No situation or need is too small or too big for Him to handle! You don’t have to know what to say or do, all you have to be willing to do is ask.

How’s everybody doing? Things haven’t been easy for me lately. The last few months all I wanted to do is get on a plane and fly home to be with my family in Vancouver. You see a few months ago my mom took a fall and broke her pelvis. With COVID-19 and living in another province, this has made the ability to go home if I wanted to very complicated and that sucks! All of her care has had to be handled by my amazing sisters, and it bothers me that I can’t be there to do anything to help. I can be supportive from a distance but its still hard not to being able to do more than that. She’s been in great hands with my sisters though and honestly I can’t thank them enough for everything that they’ve been doing!

I don’t really think that it’s all that necessary to get into a lot of detail regarding my mom’s specific case. However, what fueled me more than anything to start writing this piece were some of the questions I have in regards to her hospital visits. Without a doubt the protocols that have been put into place have made receiving care in our ER’s different and at times difficult. So when someone goes to ER and ends up back at the hospital within a 48hr period, only to discover that her pelvis is broken in two places. I think its only natural that you start asking some questions as to why it was missed on that first visit. That’s not to say that it wasn’t legitimately missed the first time. Had my sisters been able to be there with her they might have been able to press for more answers. Maybe even ask about doing other tests like a CT scan. It might even be as simple as giving the physician a piece of information that might lead them to the diagnosis.

First of all let me say this. The dedication and service that our healthcare workers have been giving us through this pandemic has been amazing. Without them we don’t gain the upper hand on a pandemic like COVID19. We need to be grateful for the people who work in our hospitals and throughout the healthcare system. So in no way is anything that I’m saying meant to blame anyone. If anything they have been stretched too thin, and they are doing the best they can under the circumstances. What I am saying however is that we are facing some unique challenges, and I have some concerns and questions when it comes to the care we receive during a pandemic. I think most of you would agree that never having to go through anything like this, that we are all dealing with a very steep learning curve right now. Even being as far into the pandemic as we are.

One of the challenges we face with COVID19 is that as soon as a person needing care arrives at the hospital they virtually left are on their own. In my opinion, the difficulty with this is that in so many cases this creates a barrier in the level of care we receive. Think about it! A person arriving at the ER often comes with someone because they need that person to advocate for them for one reason or another. This might be a child who needs a parent because they don’t feel comfortable with being on their own, or that they might be unable to answer the questions medical staff are asking. It might be an elderly person who just doesn’t think to ask those questions that they need to. What really comes to mind however are those dealing with various forms of dementia or other more serious illnesses that require someone to assist or be with them.

The protocols that are being put in place with COVID-19 are adding all kinds of extra barriers. I understand why these protocols have to happen and I fully support them. However there’s still a very large problem that we need a solution to. What are the answers? I don’t know if that’s something that any one person can easily answer. There are so many factors are involved. Its a pretty helpless feeling when a loved one goes into the hospital and you have no ability to help them. Especially when you know they need help! For the caregivers involved there should be something put in place where they can at least pass on information to those involved with that persons care. There are too many cases happening where communication is a big problem! Moving forward I really believe this is an area of opportunity that we can work towards fixing.

With so many resources being focused towards COVID-19, there has certainly been a strain on the other areas of healthcare here in Canada that people need. As I said before none of this is being written in an effort to put blame on anyone in any way. The point I’m trying to make is that we need to improve in those areas where we are falling short and try and fix them the best we can. The only way we do that however in my opinion is through using a team approach. Am I frustrated in the problems that this virus is causing? Yes! At the same time I have to have patience and understand what the healthcare system facing. Often our emotions take over because it involves our loved ones and we only want what’s best for them.

Regardless of the reasons, at the end of the day it comes down to the fact that people are slipping through the cracks. So what do we do? I can’t help but feel compelled to be a voice for those who can’t. Sure with hospitals opening up little by little we are seeing the care get back to normal levels. Does that mean we just forget about these problems that people are experiencing. With COVID-19 some of these protocols are going to be the new norm in healthcare I’m sure. This means that some of the issues are going to continue as we move beyond the virus unless we do something to fix them. Again, another reason to open up a dialogue with those responsible for Canadian healthcare both at the Federal and Provincial levels!

All I’m trying to achieve through what I will call “a rant of frustration” is to bring some awareness to some pretty serious obstacles that people are facing at the moment. In a perfect world they get fixed overnight but we don’t live in a perfect world now do we. At the same time we can’t just sweep these problems under the carpet! Living with a chronic illness I have a pretty good understanding of the needs within the chronic illness community. Patient communities like mine can often have to rely on constant care from a hospital. So when a person living with a chronic illness has difficulty accessing that care it isn’t just a “little thing” but rather it can have a profound impact on their quality of life.

Nobody knows when this pandemic is going to be over. So I guess this is worrisome to me because if we don’t start doing something about these issues then even more lives will be affected. As a matter of fact as I started to write this piece, I had been scheduled for surgery to replace my stim battery that helps give me relief from my chronic pain my CRPS causes. Only to be called two days before, to tell me that the surgery had been cancelled. The date was booked for the end of July. Somehow I managed my pain through the last month and as we speak I’m recovering from surgery. These are the types of things I’m talking about! With a rare disease I don’t have the luxury of numerous options in how to manage my pain! So when the few I have don’t work or stop working I need care right away .

Like everything else this pandemic has changed about our world, so to has it changed the way our healthcare systems function. Let’s make the changes that we need to make so that fewer people fall through the cracks!

At the moment there is so much fear and anxiety in our world. Something that I have come to know and understand myself very well. Through my own health issues over the last fourteen years, fear has been one of those things that I’ve had to deal with on a number of occasions. Prayer and having God as the foundation in my life has been the best weapon against that. As I started to put together what this message was going to look like in my head. Right away, what came to mind was the fear and all the uncertainty that I had to deal with in my own journey.

At the time of writing this about 267,000 people having died, and almost 3.8 million people have been diagnosed around the globe. Never have we needed to press into God more than we do now! This is so much bigger than anything anyone could ever handle on their own. However, I’m ever so blessed to have a God who can provide for our every need. When I was first diagnosed with CRPS, I remember the intense feelings of fear that I had to deal with. As my journey began to try and find answers, I continued to stand in faith pushing in deeper with God. Not questioning why things were happening but trusting that He knew the reasons and that with His guidance I could get through any storm. More on that later!

I believe we are already seeing God show up in some really powerful ways. In a time like this when it seems as if there is only chaos and fear unfolding around us. Why not look at all the acts of humanity and compassion going on all around us through these challenging times. I’m reminded of the scenes we see coming from places like Italy. Where citizens are taking to their balconies during isolation, singing patriotic songs and lifting each others spirits. What we’re seeing more than anything however, is the massive showing of support for all the front line workers. Those who are quiet literally putting their lives on the line, to make sure we are provided with the essential services we need.

I am even more overwhelmed by the acts of kindness that are going on right here in my own city! As the global economy has hit difficult times, and people all around us are loosing their jobs. The local food bank is under tremendous strain. Yet somehow, our city still manages to raise $1,000,000 in one day to give them the financial support they needs. I love it when we see clear signs that God is at work! Simple acts like checking on your neighbors who may be at high risk of getting sick, and making sure that they have the things they need. These things are happening in communities everywhere. Even acts like buying a bag of groceries for that person who may have lost a job or is struggling financially are happening more and more often.

When I see different things like these happening I find it hard to believe that God isn’t hard at work. During times like these we need to set our eyes on God, and draw near to Him. Are you trying to do everything by yourself and feeling like you just can’t do it anymore? Are you in a place where you need to see God show up? As this pandemic has griped our world with so much fear and anxiety. I just can’t help but think about how some of these things being caused by COVID-19, have impacted me in my own journey with CRPS.

When I was first diagnosed with CRPS I had to deal with the fear caused by a disease largely unknown by those in the medical profession. At times I felt isolated and alone in trying to navigate my way through this diagnosis that nobody knew. In trying to do that though, I learnt that the fear and worries that this disease could create were so much bigger than I ever could have imagined. Things like my finances became a concern with me no longer being able to work. How were we going to manage? My emotional well-being was also being affected in different ways. What was my future going to look like? This was another question that I couldn’t get out of my head. Suddenly there were all these different fears and things that I could worry about coming at me from all directions.

All of a sudden the landscape of my world had changed overnight, and so many of those things causing fear or worry were out of my control. If I wanted to be able to navigate my way through everything, then I needed to make a few changes. I needed to make the decision to hand control of the entire situation over to God. Giving up control in those difficult situations isn’t always easy and it requires a lot of trust. At the same time the rewards that we reap if we do are great. He’s given me the confidence to face any situation without fear, and the wisdom to create a path through some very uncertain situations. Whether they be my physical health, finances, or my mental health fear doesn’t hold the control anymore.

As we walk through this pandemic, we all have different needs as things continue to unfold. Some have experienced the loss of a loved one, and others have lost jobs as a result of the global downturn. We are living amidst all kinds of uncertainty right now. Is all of this causing your world to implode? Are you scared and having a difficult time managing? Then I only have three words for you. Turn to God! You will get through this. What we need to do is stand firm in faith!

“The goal of faith isn’t to take away your fears but to leverage those fears to create bolder belief. Faith leads you past your fears and reassures you of God’s presence. And after a while, you begin to trust that God is going to lift you above the waves this time just like he did last time.”

— Steven Furtick

As I wrap things up I wanted to leave you with this quotes by Steven Furtick. Everything he’s saying in regards to faith I absolutely believe to be true. As my faith has grown and developed, I’ve been able to move past the fear and like he says leverage it. My trust that God will show up in these situations or storms has grown in so many ways. You may have noticed that my experiences have been very much like what he’s talking about when it comes to fear and faith. In my opinion this validates what he’s trying to say saying. I’m not going to tell you what or what not to believe. However I’ve experienced too much within my own journey to believe anything else! With that I say be encouraged by the words I’ve shared with you in this piece and never lose hope!

Self-Advocacy is….

The dictionary defines self-advocacy as the action of representing oneself or one’s views or interests. Expanding on this what it really means is learning how to speak up for yourself, make your own decisions, knowing your own rights and responsibilities, and how to get the information you need. There are slight variations in the definition depending on where you look but most are pretty close.

Why Is it Important

When your living with a chronic illness or rare disease being your own self-advocate can sometimes be necessary. If you don’t learn to speak up or obtain the information that you need, then it can turn into not getting the care that you need. Especially when you are diagnosed with a disease or illness that is rarer. There tends to be less the medical system can do in these cases, and so you need to be more assertive. I’m speaking purely from my point of view having been diagnosed with a rare disease. However, this speaks for pretty much anyone and should be a basic life skill.

Practicing Self-Advocacy

This can be the difference between getting the answers and care that you need and not. It really is this balancing act when it comes to how you advocate for yourself. If you find you aren’t getting answers then start asking questions and be direct, firm and polite. When something isn’t clear to you ask for clarification. At the same time, you need to be able to listen to and respect other points of view. We are all entitled to a basic level of health care. How we go about getting that level of care is important! Know what you’re talking about or the questions that you are asking. Have a strategy that you put into place in order to get what you want or need. Then, of course, have support through family, friends, and other patients/advocates.

Being Effective

There are a lot of ways that a person can be effective in advocating for themselves. I think one of the most powerful ways though is to believe in yourself. You are worth the effort that it takes to advocate for yourself and to be able to protect your rights. Setting clear goals for yourself will help you in being able to obtain what you want or need. Ultimately it comes down to you! Are you going to let others make decisions for you, or are you going to take control over the decisions that affect your life?

Self-Advocacy is a Lifeline

Whatever you do never give up! There are going to be times where things get hard and you face tough obstacles. Those are the times that you need to remember why you’re advocating for yourself. Keep at it and don’t be afraid to go after the things you want or need. Sometimes it’s going to take dedication, strength, and determination to get yourself the things you need. Not to mention a whole lot of God!

In Conclusion

Through my own personal journey, there have been times where all I’ve wanted to do is give up. The most obvious being the day I received my diagnosis. That day was a dark day! After almost a year and a half journey just to find a diagnosis I was told nothing else could be done. However, this is where being my own best advocate has helped me to obtain a quality of life that I wouldn’t otherwise have with CRPS.

I refused to believe that nothing could be done, and I started to do the research in order to obtain the knowledge I needed. Then with that knowledge, I started asking questions and we came up with a treatment plan. Things might not be perfect by any means because it’s a rare disease with little known about it. I fought for what we can do right now and I’m an active voice in my care and the decisions that we are making. That’s where the understanding on my part has to come in. There’s a limitation to what I can do at this point however and I have to respect those limits.

I leave you with this. When it comes to self-advocacy there are three things to remember and those are to know yourself, know your needs, and how to get those things that you need.