Happy New Years everyone! I know we are a couple of weeks in already! Last year is finally behind us and I’m looking forward to a fresh start in 2016!! As most of you are recovering from the stresses of the last month I’m looking forward into the year optimistic for great things to happen. I truly believe that this is going to be a year of big changes within the chronic world. For anyone wanting a look into the CRPS world, a new movie called Trial by Fire by Charles Mattocks is coming to an independent theatre near you. Hopefully this will open a few eyes as to what my world can be like at times! For a trailer of the movie go to http://www.trialbyfiremovie.com/.
Closer to home in the last few months I have taken the steps of writing emails to both our Premiere and our Health Minister. Why? I want changes to start happening in the medical community and within all levels of government so that chronic illness is seen for what it really is. For most of last year I’ve been thinking about various ways that I could do my little part. How can I do my little piece in bringing about change in perception and treatment, in those of us living with chronic illness. Sometimes you can overthink the answers that are right there in front of you. None of us would wish what we go through on a daily basis on anyone else right. We come up with all these great ideas of how we want to see and create change but that’s all they are most of the time is ideas. We never do anything about them because it requires putting ourselves out there and then it becomes too real!
So a while ago I decided I was tired of not putting myself out there. I made the decision I was going to take baby steps , and open myself up to taking different risks and seeing how they all play out. Its much like a relationship with God you have to open yourself up and make yourself vulnerable if you want to see change in your life. CRPS may have tried to steal a lot of different thing from me but I can use those things in so many positive ways. I don’t want to sit around and watch life pass me by because I know God has challenged me to do amazing things with the life He has given me. Are you willing to step over the line and take that same risk?
So I decided to start with something simple and wrote two emails. The first was one that went to the Premiere of our province explaining what my life had been like living with a chronic illness along with concerns within our health care system. Except I multiplied that by the thousands of us out there who live chronic lives, asking him to make Nov.2 a CRPS and Chronic Illness Day here in our province. Several weeks went by and I hadn’t received any type of a response.Then one day I opened up my email and there was a letter from the Premiere saying that he would pass it on to the Minister of Health. A few months had gone by and I had received no response from the Minister of Health so at that point I decided I had nothing to lose so I took steps once again and wrote another email.
Two days before Christmas I opened my email and to my surprise it was an email explaining that my request was going to be put forward in legislation, making Nov. 2, 2016 CRPS & Chronic Illness Day here in our province of Saskatchewan. It gives me hope and I was encouraged that if I could write a letter and receive a positive response like this, then what else can I do to create change or make a difference. Doing my small part is going to help the greater cause and no part is insignificant! What I’m trying to say is look at what you can do and not what you can’t do.
It takes an army to win a war and every person in that army has a roll to play. Think about an army of ants, each ant has a specific job that they have to carry out. They work together towards reaching and obtaining a goal like getting food or building their home. There are a million different examples that I could provide you but the point is that we can’t obtain our goals unless we work together in getting there. What does your little roll look like? Maybe its something as simple as sharing your story with someone who needs to be encouraged! Or maybe its taking on a greater roll within advocacy? So I challenge you to look at where you are at right now in this moment. Ask yourself what can I do to make a difference? If your having trouble trying to figure everything out then have a conversation with God because nobody knows you better and can provide some of the answers that you are looking for.
Today I wanted to share a post with you on a time where I had to overcome a daunting challenge! There have been many of those over the years. However I wanted to keep things related to being diagnosed with CRPS seeing as this is a blog about living my chronic life! There certainly hasn’t been a shortage of those either. To pick just one is really hard because they’ve all been hard to get through. There have been financial, physical, and mental challenges of all types just trying to get through every day that you have to live with this illness called CRPS. If I had to pick just one I’d have to say that losing confidence in myself would have to rank up there as a top contender.
I mentioned this in yesterday’s post and today I’ll get into it in a bit more detail. When everything starting happening to me back in 2006 my world started to get flipped upside down. It was hard enough having to deal with the physical limitations that were happening to me but the mental side of the illness just added that extra little bit to push things over the top. It’s hard to explain but it was as if my brain was spinning out of control. I was now on a totally different playing field and I just didn’t know if I could play the full game that I had to play. With everything that I had to overcome and the other challenges down the road that I knew I was going to have to meet seemed next to impossible and I found my confidence at an all time low.
There were so many new ways that I was going to have to adapt not only physically but mentally in how I approached everything. Looking at this today the physical side of things was the easier of the two because without confidence the mental side of things was that much harder. All of a sudden I had to learn this whole new world of how to do things and that was scary for me. Not to mention the pain that I now had to deal with. In my mind all I could think about was how in the world was I going to climb this mountain that now looked impossible to climb. It was a matter of leaning on my faith at trusting that I could take baby steps to gain that confidence back. Let me assure you that there were days where I never thought that it was going to happen.
This wasn’t a process that happened overnight! It takes time, patience, and energy that you don’t always have to gain your confidence back. I’m not going to put a time frame on it because everyones situation is different. The point is that you can regain that confidence and to work at it slowly. It might seem at times like your never going to get it back but it will come, and as you work at it and gain bits and pieces back you begin to see that it might actually happen. I’ve had CRPS now for just over nine years and just now am I starting to feel good about where my confidence level is at. As you grow into and adapt to your disability, you become more confident with your abilities.
So my advice to you is this! You might feel like the daunting challenge is to much to handle or get through but push on and do the hard work to get yourself there because you can do it!
It’s a busy time right now for most of us as we try and get ready for Christmas in a few days. If you have kids like I do then you have concerts and last minute preparations to make before Christmas morning, along with so much more to do. In a few days I’ll be heading out to the lake for Christmas to gather with family for the holidays, so I’m trying to be a bit pro active and organize a few posts for between now and when I get back. I want to take a few days away from the computer in order to focus my time on what’s most important my family! The next post you read will be from my blog friend Julie over at ” it’s just a bad day not a bad life “ who has been nice enough to put together post for me. If you get the chance go on over and check out her site
Recovery continues to be very slow but things are moving in the right direction. It takes next to nothing right now for a flare up to start but I’m managing better than I was which is a good sign. I’m in this for the long haul and there’s a fight starting to come back that’s been missing for a bit. We all go through our periods where discouragement tries to set in, and I’d be lying if I said I hadn’t been dealing with some of that over the last couple of months now. To say that this latest surgery hasn’t knocked me a bit off track wouldn’t be the truth. It’s been really hard to stay focused and positive when the recovery process has been so slow. You begin to wonder if anything will change because from day to day the changes are so small. When this whole implant process began a few years ago I entered into it knowing that there were going to be a few bumps and bruises along the way. Did I expect so many bumps along the way? No! Never in a million years. It comes with the territory though when you sign the paperwork, and you have to deal with it the best you can! I need to look at the fact that in the end, these implants give me hope and do make a difference in my quality of life.
They say the best medicine is to laugh and that’s what I intend to do with our family over the Christmas break. All the schoolwork, sports activities, and other scheduled stuff that makes life so busy will be put on hold for a week to spend time out at the place you see below otherwise known as our cottage. There’s no other place I’d rather be at this time of the year. With the exception of missing all of my family out in Vancouver!
There’s nothing better than all gathering at the amazing rink my inlaws make every year for our families to enjoy. Our cottage is just down the road from here. I couldn’t be more blessed than to have a place like this to go out to every Christmas. Pictures and words really don’t describe how therapuetic this place is when we go out there. It really is like being in a Winter Wonderland with music to skate to as well. Now with my CRPS I can’t skate but I sure can take in all the atmosphere that gets created in this magical place. The laughing and all the good times! The even better memories that have been created over the years in this special place. Not everyone is blessed to have a place like this to go to, and so for that reason I never take it for granted. So for the next week we will move out there and I’ll be able to go to my happy place never forgetting how much God has blessed my life.
I’d like to come back in the new year refreshed and and full of energy. Its been a tough year one that’s seen some downs and distractions taking place. My goals in 2015 are to awaken that fire that’s within me to beat down CRPS and to once again start doing things that people have told me I can no longer do. So often people say that things will never change and that life can never be as good as it was. Well I refuse to see it that way and I expect to see great things for my life. So with that being said Merry Christmas to you all!
The past 72hrs has been challenging to say the least! Several trips back to see the surgeon and the staff at the implant clinic haven’t yielded a lot of answers. If you hadn’t read my last post you may not have known that I had my surgery to remove and relocate the second of my two implants. It now sits under my left clavicle and I’m happy with where it is, with any luck it will work out better in this location. During the surgery we ran into some problems and found out that the site had become infected, and we are trying to understand if it might be related to the last infection that I had.
Everything was cleaned out during the surgery and I’ve been put on antibiotics and will undergo further tests next week. We are hopeful that the treatment will work but it’s a watch and wait type thing. The surgeon will run some tests to make sure that nothing has gone to the spinal cord as well. It’s one of those kinks that I didn’t need thrown into the mix but I guess it is what it is! The pain is super intense at the moment and I’m doing my best not to lose my mind. I’m on day four and hopefully in a day or two we’ll see more improvement. Yesterday I couldn’t understand why the pain was getting worse but after talking with the staff at the implant clinic things now make sense. I won’t go into detail but after talking to them about what was done during surgery, I have a better understanding of why all the extra pain.
My intentions were to finish this yesterday but that just didn’t happen. I’m having a really hard time at the moment dealing with all of this. Going into this surgery I thought I was prepared mentally but clearly I had that part wrong. I can deal with the physical pain but at times everything gets to be to much and I just want it all to be over! It’s also taking it’s toll right now on the rest of my family, with having to make lots of adjustments while I get better. Sometimes that can be harder to deal with than having to deal with recovery itself! It isn’t fare that my family has to be affected the way that they are. At times like this I get angry at the CRPS and the changes it’s caused in my families life. This family has stared adversity in the face before however, and like all those other times we will get through this one as well.
If anything all of this drives me more to beat this illness, and in order to do that I need to trust that God is going to help me do it. It’s been a rough week and my emotions are running on high! Have you ever had that dream where you need to take a breath but you just can’t. Over and over in the dream you gasp for air but you just can’t seem to get the breathe until you wake up. Well that’s kind of how I feel this week, I’m having trouble getting my breathe. Once I open my eyes and get that breathe I know everything will be ok. It’s just going to take a bit of grit and determination to get though all of this.
All of the feelings set aside the surgery itself is going to help improve things for me. I already know without a doubt that moving the battery to where it is now was the right decision. I have to admit I didn’t like the thought of where it was going to go. Sometimes I just need to listen and not question! Thanks for listening to my frustrations in today’s post, sometimes just laying it all out there helps.Well enough rambling for today and besides I need to rest up.