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.
Its been one of those weeks where the needle on my gas tank has been running on empty! My pain level has been hard to manage and its taking everything within me to get through every day. Some days it feels as though I wake up and I just don’t have anything in me to give. I ask myself how I’m going to find the energy I need to get through that day. This is a fight I live day by day and some days are easier than others. Sometimes my tank is running on empty and others its full and getting great mileage. So like when you get into your car to go to work, I often find myself checking my gas tank to see if it needs filling.
Chronic illness can suck your tank dry and so you need to be checking the gas tank on a regular basis. I check mine every morning and for me that means having a conversation with God asking him to fill my tank. The last thing I want to do is run out of gas! For anyone battling CRPS or any other chronic illness you know that this can happen very quickly. Over the holidays I’ve had to fill my tank numerous times but by having that five minute conversation with God every morning I ensures that I never run out.
Its more than just checking to see if I have enough gas in the tank. There are other things that I need to check out with my car. Every so often you get the oil changed and you check the belts and all the other fluid levels. So I have to do the same thing with my chronic illness and check to make sure I’m putting all my different tools I use in order to manage my pain into place. I make sure that I add anything else that I might need to into that conversation I have with God. So maybe every once in a while that conversation with God is a little longer than five minutes.
As well as an oil change you have to have things like tune-ups and tires rotated in order to keep the car operating at its best. Doing all these things are all a part of a regular maintenance plan for your car. With your illness you have to make sure your doing the same things. You always hear mechanics saying that if you do the preventative maintenance then your car will run longer and last longer. Well the same holds true with your chronic illness. If you follow the plan your physician has set out for you it will make things more manageable in most cases. That’s not to say that you might have periods where things are difficult. It gives you the best chance at managing your illness more effectively and with as few symptoms as possible.
It can be so easy just to drive our cars into the ground not doing the things we need to do to maintain them! There are so many different ways that we can stay on top of the maintenance, yet that’s easier said than done. When your hurting all the time and all you do is spend time fighting your illness, it can be easy to forget those things you need to be doing on a regular basis. That’s why checking in with my mechanic (God) every day helps to keep everything running the way it should. Especially around this time of the year when it can be so easy for my body to break down!
I’m looking forward to the New Year and a much better year with my health. Looking back this last year was extremely tough both physically and mentally! If it wasn’t for those constant conversations with God to get through it all, my bolts would have rattled loose and my car would have started to break down. I wasn’t anticipating that it would take this long! Like when you have to rebuild a car engine I have to rebuild my body and that doesn’t happen overnight! I’ve had a great mechanic that’s been able to make sure all the parts are in place, and all the fluids are full. I’d highly recommend this mechanic because He does great work!
It’s been a while since my last post but I had to give myself some time to rest and try and deal with all the extra pain. It’s no secret that since my last surgery I’ve been really fighting to get myself back to where I was at before. I made the decision earlier in the summer to step away from my writing for a while so I could focus on myself and my daily struggles. I haven’t given up this blog or anything like that, so don’t think I’m shutting this down. I also needed to step back and get a new perspective on how I want to write this blog. When I started all of this I always made a promise to myself that every post would have meaning, or enable the reader to take something away from it.
All summer I’ve been living out at the lake with my family taking care of myself trying to bounce back to normal for someone living with CRPS. If anything it’s allowed me to clear my head so that I can better share my experiences as I walk through this journey. When living with CRPS you never know what each day is going to bring upon you, or what path that journey is going to take. It just so happens that this summer I hit that fork in the road and I needed to choose which road to go down. Do I choose the road that has all the hills to climb and takes more effort, or the one that’s easier to navigate leaving me with more energy. As much as I wanted to write through this summer I just didn’t have the energy to keep going. Over ten years I’ve gotten really good at figuring out balance! Listening to what my body says is ok and when to just shut down!
It’s been a difficult year and with that has come decisions where I’ve had to slow a lot of things down. The best piece of advice that I can give to people isn’t hidden in the latest research or treatments! What I can advise is listen to your body! Do what works for you, not what works for everyone else! Pay close attention to what triggers your pain. Is there something that you can do that reduces the pain? If so have you made it a routine that you do it more than once or twice? Find what works best for your body and not someone else’s body. I’m not at all saying we shouldn’t help each other with ideas on how to manage at all. I’m just saying so often it’s easy to say well it worked for that person so it should work for me! Their body isn’t yours and what works for their pain control may not work for you. Listen to what your body is saying!
I know this post is pretty light and there isn’t much to it but I wanted to put something up and let all of you who read this know that I’ve just been taking some time for myself. Now I’m ready to get back at it and start writing again. One thing I found since becoming sick is that your body is always on high alert and being tired has just become a part of life. My way of dealing with that is just to step back and say I need a break! Summer and cottage life allows me to do that!
The New Year is under way and now its time to get back at it. After some great family time out at the lake we are back into routine with the kids with school, sports, and everything else that makes life busy. Then throw in a chronic illness and it makes for a lot of fun! Even though our family fought through colds and sickness over Christmas we still had a fantastic time with the rest of the family. We even welcomed a New Years baby into the family on Jan 1, 2015. My nephew and his wife welcomed their baby girl named Everly Jean 7lbs 12oz into the world! Congrats to Ward and Nicole! On the pain front things have been up and down. I’m trying to keep myself as distracted as possible and push through all the flare ups which have been coming often as I continue to heal from surgery.
A big thanks to Julie for putting together a guest post for me while I was away as well! It was nice to get away and have everything organized to the point where I didn’t have to even get near a computer. Now if I can only put together a few posts to try and stay ahead of the game this year. I’m not big on putting together New Years resolutions but if I had one this year it would be that I’m going to do a better job with with being a advocate towards CRPS. I’ve already started making some minor changes to my site and there will be a few more coming. It’s really a matter of organizing a few things and adding others. I haven’t felt stronger about making connections within the chronic illness community and trying to make a difference.
As I’ve mentioned before 2014 was a challenging year but I believe it has changed me in some very positive ways that I need to now pursue. As I start 2015 I’m choosing to put last year behind me, and getting to work on the list of goals I’d like to accomplish this year. Its time to start doing a lot of praying and beat down my CRPS to take back control. My photography has been a big part of that giving serving as a great distraction but because of my physical health had to be put on the back burner a lot last year. So for this year a goal of mine will be to get all of that back on track. So far that’s off to a good start as I’m already making some changes to my photography website Ross McCreery Photography. Along with my main photography website I now have a Facebook page https://www.facebook.com/RossMcCreeryPhotography that updates my latest work. Check in on both because there are a few surprises in the works.
There isn’t much of a message to today’s post except that I’m starting fresh for this year full of more strength and determination! Once again God has helped me get through a lot over the past year and it wouldn’t be right if I didn’t acknowledge that. Without His guidance to get through the recovery over the last couple of months I would have without a doubt gone crazy! I also know that even though I’m still recovering that there are some very powerful lessons to be taken away from all of this. Once all the dust clears and I’m fully recovered I’m sure I’ll be able to reflect on those but for now I’m still trying to navigate my way through things. Like I’ve said on so many occasions it doesn’t matter if its a big victory or a small victory because a victory is a victory! Each one draws you closer to the biggest victory of them all defeating your chronic illness!
Have you ever been so discouraged that you just wanted to give up? Well that’s how I’m feeling at the moment. I’m now into week five of recovery and I’m not very far ahead. Last night we had a wedding to go to and I was going to get there if it killed me. Call me stubborn, hardheaded, or just plain mulish but I wanted to get out for a bit. Well kill me it almost did! We had planned out how this was going to all play out, and I was going to skip the ceremony because I have problems sitting for very long periods of time. The best thing we figured would be to go to the reception that way if I needed to leave I could. I made it for about an hour and a half before the pain got so intense that I couldn’t take it and had to head for home.
I’m frustrated at the moment because the doctors are saying that my body is just going through a rough healing process and that I just need more time. How much time exactly is that? I will be meeting with the surgeon this week to discuss things along with a few concerns I have. It feels like I’m not getting anywhere very fast and there are days where I just have to have a good cry. Yes you guessed it your getting one of those posts today! Never in my life did I think that I’d be pushed and challenged as much as I’m being at the moment. When your body is screaming with pain your brain is telling you one thing but God was right there telling me another. Over and over I’ve said I’m going to beat my CRPS and that will happen one day. I might be down today but tomorrow is a new day and the fight will resume.
Days like yesterday are hard because things with CRPS can spin out of control so fast. Adding surgery into the mix makes things a lot more volatile, and you never know what the outcome is going to be! So last night was one of those nights where the surgical pain combined with my CRPS caused my CRPS to spiral out of control. Its a fight that I’ve been going through since having the surgery, and one I know I can and will win. My winning spirit just wasn’t there last night however and I had to fight to stop the tears from flowing during the reception dinner. Times like these are difficult to battle through and all kinds of thoughts enter your head. My wife asked me tonight if I regret having the surgery and without hesitation I said “no”. Why? If I say “no” then I’m giving up on something that can be life changing, and take me in a very positive direction.
Am I feeling sad and frustrated at the moment? You better believe it! My emotions got the best of me as we drove home and I couldn’t hold it together. So I had a minor meltdown in the car and at home later. CRPS is a battle where every second of every day is consumed by pain. Sometimes it has to come out and show itself and if that means crying then get out the box of kleenex! I am thankful that I have a wife who understands me and knows how I’m feeling most of the time. I felt as though I’d spoiled the nights fun for the family. My wife then reasured me that in no way had I spoiled anything, which was just what I needed to hear.
For some reason over the last couple of years it seems as though I’ve faced more obsticles, and come up against more challenges than I have in a while. As I walk through each of these challeges, I always walk away feeling like I need to be more of an advocate for CRPS and chronic pain. Something is pushing me to go outside my comfort zone and I need to pursue it. So one way in which I’ll be doing that will be in making a few changes to my site. I mentioned this a while back and seeing as I can’t do a whole lot at the moment I have the time to make the changes. I’ll be introducing a few new links and blogs to my site and from time to time putting up a guest post. I’ve often talked about making these changes but never really got around to making them. Even though most of the content on this site will stay the same, there will be tweaks here and there to speak more towards CRPS and chronic pain! That’s it for today I just don’t have enough gas in the tank and I need to rest so talk to you all soon.
Who knew that a month after surgery I’d still feel like I was run over forwards and then again backwards by a Mack truck! Yes it’s been about four weeks since the surgery and there’s still a long way to go. The mental battle that I’ve had to face through all of this has been huge. On more than one occasion I’ve had to tell myself not to give in to fear, or any other distractions that I’ve come up against along my path to recovery. On Wed I faced yet another obstacle as I ended up heading into the ER because things took a turn for the worse. After not being able to get ahold of my neurosurgeon or my GP I was advised to head down to the hospital to get things checked out.
When I got to the hospital I knew I was in for a bit of a wait. Nothing unusual for a hospital ER right! The doctor came and did a few tests as they always do, and then ordered a few more things to be done and told me that it would be a few hours before we got the results back. So I did a little more waiting and grew a little more tired, before a nurse came and told me they were moving me to another part of the ER. I felt like I was being put in isolation with nobody around and nobody coming to check on me. Under normal circumstances this quiet place would have been great for a person with CRPS to wait. On this night however it was too quiet giving my mind to much of a chance to think, and all of a sudden the pot boiled over and everything just came crashing down on me. I couldn’t put on that brave face anymore, and the tears started to roll down my cheeks as all the stress started boiling over. Of course the timing was perfect because just then the doctor walked in and she could see the emotion all over my face. After talking to the doctor for a bit longer, not only could I hear it in her voice but I could see in her face that she could understand the pain I was in. I could see she really understood me!
There wasn’t much that the doctor could do for me to help me and although I left the hospital after a long night frustrated that nobody could help me, looking back not everything about the evening was negative. After the fog had cleared and by that I mean the frustration and everything that boiled over that night I was able to look at things in a much more calm and realistic manner. I needed that alone time for everything to come up to the surface. If you keep pushing everything down then it builds and builds leaving you like that earthquake or “the big one” waiting to happen. If that were to happen then everything around you would come crashing down around you crushing you in the process. Isn’t it better that we let off pressure every once in a while so that it doesn’t build and build until we can take no more.
As I sat in that room that night letting my frustrations come to the surface saying prayer after prayer I knew that there was a reason this was happening. I may not have realized it then but when I think about it all now it makes perfect sense. It was time for God to hear my thoughts, prayers, and all the frustrations that I needed to get off my chest. Once again when everything seems to be be getting to be too much, and just when I start to doubt that people are listening to what I’m saying He shows me that there is someone listening and that someone cares. In dealing with an illness where it can be hard to get people to listen, over and over He shows me that no matter where or when He will be there. As is the case with the team of people that have been put together to form the staff at the implant clinic. I really believe that God placed each one of them in their position for a reason.
Sometimes you just have to do a lot of sorting out of all the garbage! Ask yourself is everything in all of this bad or is there a lesson deep down beneath all that trash? Or quite simply do you just need to let it all out because God listens even when it may not seem like nobody else is!
Things are looking up because it looks like spring has finally arrived! The snow is finally melting and it looks like I can finally stop wearing my winter jacket. I shouldn’t say that though because who knows what our weather will do these days. They are after all forecasting snow again on Monday! Hopefully it won’t stick around. It’s good just to be able to get outside for a change. It won’t be long before all the yard work begins and judging by what lays beneath all that snow it looks like there’s a lot of work to do. That will all have to be put on hold though until I heal from my surgery.
This weekend the kids have gone to be with their aunt for the weekend, a much needed break for my wife and I. Last night was date night even though I’m not doing very much. I wanted to go out for dinner but seeing as I’m still having trouble sitting for very long we ordered dinner in and had a quite dinner and evening together. It’s great just getting time together with no kids to worry about, as I’m still spending a fare amount of time laying down and taking things easy.
The pain is still pretty intense at times in my shoulder and clavicle area. The areas they opened in my back are feeling a bit better ever day, and so slowly things are on the mend. It’s been a really long two weeks and the recovery process has been a lot harder than I’d like but the surgeon is saying that everything is looking good. The plan for now is just to monitor things to make sure we caught the infection, as well as do a few other tests. Next week I’ll also go in to the implant clinic, and we’ll try and fine tune the implant for my upper limb. We will also do an x-ray to see if the lead in the upper implant has shifted at all.
When I woke from the surgery and the unit was turned on I started feeling the stimulation down my right arm instead of my left. Immediately I started thinking here we go again! In case you didn’t know this happened once before. My mind started thinking about having more surgery to reposition the lead but everything has worked out, and they were able to program it so that the sensations are being felt where I need them the most. We still however want to check and see if anything has moved. At the same time they will spend some more time adjusting the unit so that it gives me the most effective pain relief possible. There is a lot of going back and forth between the hospital and home at the moment. Sometimes I just don’t know what to think when you pass hospital staff and they know you by name!
Even though this surgery has been one of the harder ones, I’m happy with the overall results. I didn’t think that putting the battery in my clavicle was going to be comfortable but once the surgical pain is gone I’m sure it will be fine. With next to no fat in that area, I was sure the battery would really stick out and be uncomfortable. I was all prepared to have a large lump sticking out because of the battery but my surgeon did an excellent job and you hardly notice it at all. Not that it really matters because all that’s really important is that it helps with a persons pain relief.
The timing of all of this wasn’t great because there is so much going on around here. Hopefully this week the construction company will start work on our basement, and there is the usual spring cleaning that needs to take place around the house. At the moment though lots of rest is what the doctor wants to allow my body to heal. For those of us dealing with CRPS, healing after a surgery is always takes so much longer. So not pushing myself right now is what’s in order.