Hi everyone! I know its been a while since my last post and so I figured I better get something up. That’s if any of you are still reading this blog! Today is really just an update on what has been going on. In Sept things were busy with a couple of speaking engagements and a week-long trip to Ottawa involving advocacy work. While in Ottawa for that work an opportunity arose to speak with representatives from both the Liberal and Conservative Governments in regards to Bill C-81 the Accessible Canada Act. This was a real privilege to take part in and I had to ask a lot extra of myself in order to do it.
In October I started experiencing a really bad spike in pain which ended up with me making a visit to the hospital. I have managed to get the pain under control however am still dealing with some unanswered questions. Pushing forward and not wanting this setback to derail me, in mid Oct I was asked to speak at a conference in Montreal. I was given the opportunity to share my story with researchers from the Society for Medical Decision Making. Another opportunity that you don’t get every day, and one in which I got to share on behalf of the patient/advocate with researchers from across North America.
After sharing my story a researcher attending the conference pulled me aside. She told me that the highlight to her week was listening to my story, and that it opened her eyes to just how much rare disease affects an individual and their family. Then she thanked me for helping her to see things from a different perspective, and that this would change the way that she would do her research moving forward. At moments like these it doesn’t matter how many individuals are at the conference! Being able to impact just one person in the way that I did make it all worthwhile.
Arriving home from Montreal and with commitments out of the way I could now spend more time on self-care. A good thing because dealing with my health right now has to be my focus. At the moment I am undergoing different tests to figure out why my pain is spiking so much as of late. It all gets to be so much at times but you do your best to pull out anything positive you can. You will see in one of my next posts, that a great deal of positive can result from a these trials we face.
I’ve moved past the point of allowing anger, fear, or any of the negative that tries to creep in. In the thirteen years since diagnosis when it comes to research, treatments, or even cures there’s been very little changed with CRPS. Yet this tends to be where people fighting this disease get stuck and spin their wheels. People diagnosed get paralyzed in fear and start to feel helpless because of the uncertainty of so many different things.This is an area in my life where God has really broken down walls and not only fills me with hope but also helped me to keep moving forward with my life.
I’m not willing to let life pass me by! CRPS can throw everything it has at me but every time I’ll get up and fight stronger and harder never giving up. I guess in a lot of ways you can compare crps to the likes of learning how to ride a bike for the very first time. At times you are going to fall off, and so you dust yourself off and get right back on the bike.The hard part is in telling yourself to get back on. For me personally God is the one who lifts me back up every time I fall off, encouraging me to keep going and move forward with my life.
Like I said before there really is no message in today’s post. Although if you read between the lines maybe there is one I don’t know. What I will say is this. We know that as each of us walks through our own personal journey’s, that we might come up against some really tough situations. Right! It’s in my own personal opinion that we need to see them as opportunities to learn and grow from them. Even if that means not understanding the why’s of a given situation! God has really helped me to strengthen this area of my life. Empowering me to use those obstacles or tough times that I go through in a number of positive ways.
Not everything about this diagnosis has to be a bad thing. The person I have become as a result of being sick would require me to write an entire chapter of a book in order to explain. Yes chronic illness has radically changed my life along with the rest of my family. What I am choosing to see however are all the ways in which it has had a positive impact on my life!
Things have been a blur the past few weeks because its been so busy! The month of June is one of those months where you both love it and hate it! With the school year coming to an end we have all the usual year end things happening and at the same time we can’t wait for summer holidays to start. Just get me through the month and all will be good. Throw in the tail end of our cottage build and finding time to practice self care has been really hard. I just have to keep telling myself I’m almost there!
I’m going to be honest with you and tell you that today I’m not doing so hot, and doing everything I can to fight off pain and keep myself functioning. Sometimes I think that this is when I do my best writing however because it helps me tap into the reality of what I deal with every day! I have always tried to live life with a chronic illness with a positive attitude, to be an example to those around me that life is still great in so many ways! That will never change! I promised myself one thing when all of this started and that was to make a difference in other peoples lives! To learn as much as I can about CRPS and take that information to as many people as possible, being a voice in the process to those affected by this illness!
Sometimes this disease gets the best of you and it takes nothing to get mad at it! Why? Quite simply because every single day it reminds you that its there and that its trying to steal from you. The key however is that I won’t let it. Even on days like today where I’m having a bad day with pain, I focus on being positive and not letting it steal from me. That’s where surrounding myself with people who are positive and help me to focus on the good things is so important. I can’t stress that enough because it can be so much easier to pick out all the bad stuff that’s going on. I try and look at all the good things I have in my life like my faith, family, or circle of amazing advocates that I have around me. They’re always there to pick me up when things get really frustrating and when I want to naturally go to that negative place!
I’ve also said it a million times and I’ll say it again and again God is the single most positive influence through all of this. When nobody else can be there in those really hard times for me He can be! I’ve said a lot of prayers through this journey and will continue because I know He hears them all. When things seem impossible at various times He makes them all very possible. Too many times I didn’t have the answers or the obstacles that were in front of me seemed just too difficult to get passed! However every time I ask God for help a path or a door opens for me to get through or that answer becomes quite clear. That isn’t chance or something random that happens. That’s God answering prayer!
Some of my fellow advocates have gone through journey’s that seem just too unbelievable to be true! I don’t see them that way at all. Often some of those stories have brought people really close to death. I look at them and see a testimony that a person has and the power to speak into someone else’s life. This again is God working through a person and using that person in a certain way. I know talking about faith isn’t very easy for some people but for me it is because I believe in the things that He has done and is doing in my life. I have experienced first hand the way that He works in my life and through others. So when people tell me that they are all alone I tell them that your never alone because the truth is that you aren’t!
I always tell people that even though I’m going through all of this every second of every day I couldn’t feel stronger on the inside. Again I believe that this is something that God has placed within me in that He has enabled me to face or handle anything! There are days like today where its a struggle and that the pain is intense, but God never said that there weren’t going to be hard days or ones in which we don’t have to face adversity!
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!