Today’s been one of those days that finds me moving just a little bit slower, and feeling just a bit more pain than normal. Par for the course in a life that I’ve come to know and accept. Every day is a new adventure and like I tell so many of you, never expect your day to turn out the way you had planned it. I’m not trying to be negative in what I’m saying but I’m just being realistic as a person who’s living with CRPS! Today’s adventure is to sit down and try and maintain focus on putting together this post. With any luck I get this done!
When I sat down to write this post I had a completely different post in mind. At the same time I was thinking about another message that’s been nibbling at the back of my brain. It has to do with the whole area of how we handle having a rare disease. Yes it frustrates me to death that so many of us get lost in the shuffle and are often left to navigate our own way through it. This is something I find comes up over and over again with patients fighting rare disease, and won’t change unless we are helping in trying to facilitate change. Not only within my own disease but within other rare diseases as well. Desperation is pushing people to their extreme limits and it just comes out naturally in aggression and frustration. So often though that anger and frustration has a negative affect on how we handle living with our illness.
Although I completely understand why those feelings are coming out and have had to deal with them myself, we need to find ways to focus that anger in a positive constructive way. At the beginning of my diagnosis I was angry and wanted answers. So I expected that “all” physicians should be know what CRPS was, and that they should have been able to give me the answers I needed. They are doctors after all! At the time I had no compassion for physicians and that they don’t always have the answers. Clearly as times gone by I’ve discovered that there’s a need to educate and raise awareness! I discovered within myself that the anger that I held inside myself wasn’t going to get me anywhere, and that I needed to take a good hard look at how I was seeing and dealing with all of this. Instead of putting this giant blanket over “all physicians” and their understanding of my rare disease I needed to see it in a completely different way.
There was so much frustration and anger at the beginning that I couldn’t see what was right in front of me. The need to educate and work “with” the medical community and different government levels. It was very clear when I looked outside myself that I needed to change how I was approaching all of this. Why not put the time and energy into working with the physicians, members of government, and the research groups! There are great physicians and members of parliament or government who are willing to work with us and do know about the things we face. It’s a matter of finding those people and then teaming up with them to educate and create awareness. Am I saying not to get frustrated with that physician or member of government who doesn’t give you the time of day? Absolutely not! We are going to experience those emotions time and time again. The question is what are you doing to harness those emotions and then turn them into something positive?
So how do we flip all that anger and frustration around and create something good from it? Maybe it’s as simple as sharing your story. Our stories are a powerful tool for teaching and educating those around us what is going on with us both physically and emotionally not to mention creating awareness. In the last few years I’ve started sharing my story with medical students, nurses, and members of government. From that other members of the medical community and government have reached out to ask me to share my story. I’m saying all of this in order to get you to see that by simply sharing my story in various ways to different groups I’m making some kind of a difference. It’s a very simple yet powerful way to have a positive affect on bringing about change.
Another way would be to take part in things such as clinical trials and different research studies that will help those studying rare disease to find answers that might eventually lead to cures. There are all kinds of organizations and people that can aid us with research studies. At the same time there are certain rare diseases where there are opportunities for research because not enough is being done. Maybe there’s an opportunity for you to play a part in raising awareness for research. Whether it be getting involved somehow with the research itself, or maybe you get involved in a fundraising campaign of some type. There are so many ways that we can channel all of those frustrations that we face in living with rare disease. However it is a choice that each of us has to make! The question is what are you choosing to do?
For myself the choice is easy because I’m looking at the bigger picture of all this. This isn’t just about myself! I’m choosing to get involved in all the ways that I do because “all” of us need answers. I care about each and every one of you who are sick and only want to see you get better. The way we do that is by coming together as a patient body fighting together!
Last night was one of those typical nights where you toss and turn trying not to lose your mind! With pain levels spiking because of a flare up there wasn’t a whole lot to do but do what I do every night in praying that the pain eases. Nights like last night are typical of someone who deals with CRPS, Rheumatoid Arthritis, Autoimmune Disorders, or any other chronic pain condition for that matter. The last thing I wanted to do today besides wanting to crawl into a corner and rock in the fetal position, was tackle the very simple task of every day life! Most of you get up you have a cup of coffee and then you go about your day. For me I wake up take twenty pills to ease my pain and have to carefully plan what I can and can’t do, or what will expend to much energy causing me more pain!
I’m passionate about standing up for my fellow survivors who live with chronic pain! So the waters I’m about to enter today are solely my own views and nobody but mine! Just want to make it clear so that there are no misunderstandings. I’m writing this from my view as the chronically ill patient! Over the last little while the whole opioid crisis has been drawing a lot of attention and I just want to express my opinion of this whole issue. Governments are wanting to take opioids away from chronic pain sufferers and it would be a disaster waiting to happen.
There is a tremendous amount of fear and anger out there in the chronic pain world because of what I will refer to as “the crisis” in this article. I along with others don’t take them out of choice but out of necessity to manage and have the quality of life that I do. Yet some people would be quick to label me as an addict! I do my best to take low dosages and use alternate methods to manage my pain where possible but the reality is that not all alternate methods will work to relieve my pain.
These in my opinion are not the actions of someone who is looking to abuse medications. If I could get rid of my medication and the pain today then I would! Believe me when I say ten years of pain has been long enough! I’m not looking to take the next pill or the other 20 others I have to take throughout the day!
Patients are getting passed from physician to physician in looking for treatment and diagnosis. This makes the patients look as if they are just bouncing from doctor to get the next Rx or get their next fix! As a patient advocate and someone who’s been through the revolving door of doctors nothing upsets me more than to see us being viewed in this way! Why is this happening? Ask anyone suffering from chronic pain and they’ll tell you their desperate for answers and treatment. I think we need to focus more on research for cures and alternate treatments!
As a patient with an illness that has little known about it and no cure in site what are my options? Not many! Sure this is where lots of physicians get stuck, and whip out the prescription pad saying “here try this but I can’t help you any further” leaving the patient with no other choice but to source another physician. I’m lucky enough to have a team of doctors who don’t do this and carefully monitor my medications and try where possible to decrease if they can. They see the need to balance the use of opioids in order to control the pain in conjunction with sourcing other methods of pain control. I’m lucky that for the most part this allows me to function throughout the day!
Taking opioids away from the patient that is suffering from chronic pain and is chronically ill in my opinion will only make “the crisis” worse and cause more patients to become desperate with even fewer choices! Thus leading to higher rates of suicide. If we can come up with cures and treatments then hopefully chronic pain patients shouldn’t have to rely on these medications as much. Not giving me any voice however doesn’t help to solve the problem. The patient needs to be a part of the overall solution!
I promised myself yesterday that I wouldn’t let weeks go bye before I put up another post! Look at me! I’m trying to get back into my writing but with two busy kids and living a chronic life it’s not the easiest thing to do in this season of my life. It’s hard to believe but I’ve been writing this blog now for seven years! It seems like just yesterday that I was writing from a place of uncertainty when I was first diagnosed. Without a doubt the last ten years has been filled with some pretty emotional stories! This last few weeks has brought all those emotions flooding back! On Nov. 2 when I hosted CRPS Awareness Day I saw faces in the auditorium that almost felt as if they were a reflection of mine back when I was diagnosed. I could see the anger and the fear in some of the patients eyes, and I could hear uncertainty in their voices as they spoke. As I stood in front of those patients I reminded them that “your going to get through this” as hard as it might be right now! I told them not to give up hope!
As I spoke with various people diagnosed with CRPS throughout the day, one of the things that came up over and over was how hard their diagnosis has been on the family as a whole. An illness like CRPS has a huge impact on how the family functions and it adds even more stress to your relationships. Sometimes we don’t stop for a minute to think about how chronic illness affects them. I have a wife who has sits back and watches every day play out in front of her with there being very little she can do to help me. What support groups are there for her? None! My children being kids would like nothing more than to be able to run up to dad in the morning and jump on me or do the usual things they do with their parents. They can’t! Who explains to the child why all of this has to be this way? The parents! Fortunately God has given a lot of wisdom and understanding to manage all of this.
Family life is a bit different when your living a chronic life, and has taught me to how to have grace for others in the family who have to deal with me being ill. God helps us navigate our way through it as a family. Most of the time we talk out loud about challenges we face and work on how we can make things better. It’s not to say that things are easy all the time because they aren’t. Often there are times of misunderstanding and it takes a whole lot of listening and explaining of things to each other in order to work through the challenges we face. Now I don’t want to paint a negative picture of what family life is like because if anything in a lot of ways this illness has made our family stronger. I’m just saying that an illness like CRPS changes how you go about every day life. On the days that my wife is having a tough day I try to be there just as she tries to be there for me on my bad days! Am I perfect and there for her on every one of those days? Not at all! This is what I’m talking about in that it isn’t easy, that there’s a lot of give and take in order to support one another in the ways that we need to! There are a lot of days where I have to humble myself to tell my kids “sorry that daddy was a grouch today, the pain got the best of me” in order to help them understand why dad is acting the way that he does!
Its not easy to explain every aspect of how family life changes with a chronic illness because it can vary so much from family to family. What you really need to know though is that it affects the interactions and relationships between family members! There are lots of days that I want to blame my illness for everything and how its affected our family but what good would that do. What I really need to do is focus on making those relationships and interactions the best I can within the peramiters of my illness. Fostering strong relationships and interacting can be tougher however and takes a bit more effort when your dealing with an illness like this. So as a family we’ve had to put our heads together to figure out the best way to do that! We have relied heavily on asking God for wisdom on how to handle this.
So unless there is a cure for CRPS then trying to figure out how to manage my illness with having a great family life will always be a balancing act! So it means being aware of how it can affect our family and not allowing it to have a negative affect on us. We need to keep working hard and to see only the positives of how it has actually brought us closer together as a family.
Its been a rough go lately dealing with extra pain but somehow I manage to keep moving forward! A few weeks ago I traveled down to Huntington Beach to attend the Global Genes Rare Disease Summit. The stress of the travel was hard on my body and although I had to fight a lot of extra pain it was well worth it. There’s a trade off that comes with living a chronic life and I know there are others of you out there that understand what I’m talking about. Its all a part of me moving forward with my life and not allowing your illness to take all control!
I arrived home from the Summit changed but in a really good way. When your sitting beside a person who is one of only five people in the U.S. that has a rare form of cancer things are suddenly put into perspective. There was unique story after unique story each one impacting me in a different way. It was impossible to take away just one thing! If I felt inspired to do something about CRPS before, I left feeling as if I had to do all that much more! When I looked at the work that some people had been doing to raise awareness for their particular illnesses, I had to ask myself what am I really doing? At the end of the weekend we all went back home having gained 500 friends and a wealth of knowledge to take back to our communities.
I really feel I was able to make some strong connections and tap into some resources that will be useful here in my own community and province. Although its hard at the best of times to battle on with chronic illness I believe God gives us an abundance of strength when we need it the most, never giving us more than we can handle. With that being said as I left the conference knowing that I needed to be stronger in my advocacy efforts I came to the conclusion that no matter what I face or take on, God will provide in every way I need Him to along the way. I don’t want to be that person who says “I can’t” just because the path in front of me looks too difficult. I need to remember that God is guiding this walk and that when I’m lacking clarity or vision that I’m to look towards Him.
As I prepare to have the first ever CRPS Awareness day here for the Province of Saskatchewan I can feel my legs begin to tremble just at the thought of having to put this one day event on. Some of the people coming to this event hold important positions within our community and even our province. So sometimes I question my qualifications or I tell myself I’m way out of my league when it comes to taking this on. However nothing could be further from the truth. My qualifications speak for themselves having lived this illness for the past ten years! I need push forward because I have a testimony within my story that might just help one person find the care they need, or cause one Dr. to stop and think about how they diagnose and treat a patient. It might even be that one person from our government who comes to the event and is impacted. Leading them to say that we need to work on policy and legislation. Let me be very clear! All I’m saying is that by standing still I won’t create change!
Fast forward two weeks because this post was suppose to be up already but there’s just been too much going on and not enough time to do everything! CRPS Awareness Day went ahead this week and was a huge success! I’m not going to lie when I say I was a little worried that I wasn’t going to fill seats for my key note speaker but we were at full capacity and I think a few people other than patients walked away better informed of what CRPS is. The next day I was asked to speak at another conference and share my story with a group from within our health district. As much as I was nervous about getting up and doing it I knew I had to because we need to spread the word and make people listen.
Its not about being qualified! Stories bring with them power to change, whether it be my story or your story or someone else’s! It’s only when we move that we make a difference but you have to ask yourself are you willing to do it? Through sharing my story and all that has been thrown at me over the last ten years it is my hope that I will make a difference. All I can do is hope and leave the rest up to God!
Have you ever had one of those moments where something really profound strikes you out of the blue. Today has been one of those days and it happened as I was listening to a podcast I listen to on a regular basis. The person speaking was sharing a story about a time he went whitewater rafting with his wife. The trip started as any rafting adventure would but as they headed down river the raft they were in flipped and all kinds of chaos ensued. He continues on with the story talking about how they came within inches of their death, as they struggled to reach shore safely. After getting to shore they managed to regroup and find the raft they had all been tossed out of.
After everything that had transpired the last thing he wanted to do was get back into that raft and continue down the river, yet it was the only option because there was no other way out. He offered to pay the guide to have a helicopter fly in and pick them up but the canyon walls were too steep! There was no other way of walking out until they got several miles down river, and they had to face some very nasty rapids called the Devil’s Mouth! Facing no other choice they got back into the raft and continued down river.
Through my ten years in living with CRPS I have come to realize that sometimes this illness doesn’t give you a choice of what you have to face. So instead of going around the storm we have to go right through the eye of it. It takes every ounce of strength to tell yourself that your going to be alright, and not to let fear make the decisions for you! It takes faith and believing in yourself even though you may not understand everything that is happening or might happen down the road. I like to compare it to a storm you see coming in the distance while sailing at sea. The storm is massive and all you can see are clouds and swirling seas as far as the eye can see. There isn’t time to change course and all you can do is head straight into it. At that point you face a choice! Either let the storm have its way with your boat and face drowning, or take on what’s coming at you with a strength and determination to come out the other side.
As I continued to listen to this podcast I could really identify with the things he was saying. A lot of what I’m walking through with my CRPS isn’t a choice but I “can” choose how I can take it on and not let it define who I am and what I do. There are some days where the illness that you face is going to kick you in the butt and your confidence will be taken down a few notches. You will experience things that scare you or cause you to question and doubt your abilities! The question is do you have faith and believe in yourself, and that you can steer your ship through the storm? Are you just sitting there in the corner of the wheelhouse huddled up hoping that you get through everything, or are you actively trying to navigate and steer that ship through?
This takes me back to the podcast I was listening to where the husband and wife were facing the daunting task of getting through the Devil’s Mouth rapids. It was either choose to believe in their ability to do what the guide was needing them to do to get through the rapids, or let the current push the raft into the rapids with disastrous results. The rudder had snapped off the raft in the first flip and it was up to them to steer the raft where it needed to go. Their mentality had to change and from that point forward they had to believe in themselves, and that they were capable of guiding this raft where it needed to go. After many fearful moments they eventually got through the rapids and into the calm part of the river. It took doing the things they never thought they could in order to get themselves to safety.
At the end of the podcast I took some time to reflect on how this story related to my life with chronic illness. In that time of reflection I came to a conclusion that I have two choices. One is that I can either choose to try and push the limits of my abilities and believe that I can make choices that will help me excel in life in spite of my illness. In other words can I navigate the storm and sail into calm waters. Or choice number two is do I let the powerful storm that’s swirling all around me knock me out of the ship and let the ocean swallow me up. So what I mean is do I let this illness consume me and change who I am and what I am able to do with the rest of my life. What choice are you going to make?
“Do not let your illness define who you are or what you can do”
“Believe in yourself”