Today’s post is one that I have spoken about in the past but will speak towards it again because of its importance. Without the complex cocktail of prescription drugs or opioids, I couldn’t imagine how much worse my pain would be. With my diagnosis of CRPS there is NO CURE! There are few treatments at this time but the most effective in giving me quality of life is a combination stimulator/opioid treatment plan. There is one other called a Ketamine Infusion much like a chemo treatment which some people find successful in reducing the pain they suffer from. Without these pain management plans quality of life is reduced! My treatment plan is a drug plan that’s administered very carefully and watched by a team of people being checked monthly if not more!
So why am I going on about my drug treatment plan? The reason quite simply is that some people want to refer to those of us who are chronically ill as addicts. There’s this stereotype that comes with being chronically ill, and everywhere you go it follows you. Most recently during a Super Bowl commercial https://www.youtube.com/watch?v=X276jp-vvRY and comments made by comedian Bill Maher! I can’t and won’t try to tell you how many times that people have made this reference to those of us who are sick. If you want to read his comments I’ll leave you to search for them on Twitter. My illness has no cure! Am I suppose to stop living life just because of that! The medications help me with basic daily functions and if they are managed well can be a benefit and not a detriment to the quality of my daily life. Unless there’s a cure then this is my only form of for treatment.
The stigma out there is that we as sufferers of chronic illness abuse the drugs we take or have become addicts. This perception I think is caused in large because you will often see us changing drugs or taking combinations to see what works best to relieve our pain. We often take large dosages because that is what it takes to control the pain. Instead however too often we are looked at as someone who abuses. Some combinations just don’t work with CRPS pain, and so doctors will change drugs to see if something else will work to give us some relief. Changing medications will often cause others to think we are hopping from drug to drug. I shouldn’t have to make excuses for taking medications that I need to reduce my pain! So I challenge all of those out there who have this perception to really look into why we take the medications that we do. Don’t be so quick to label me because I guarantee you that if we had a choice, we wouldn’t want to be taking any of these medications at all!
With the proper use of my medications it allows for me to be a voice and to advocate for a cure to CRPS through this blog and other avenues. If I wasn’t controlling my pain through opioids then I wouldn’t be able to advocate for my chronic illness like I do. Its time to stop lumping us into the category of abusers and see us for what we really are. Some of my fellow advocates are doing amazing things to raise awareness, and providing other sufferers of chronic illness with support and so much more. Without their specific drug treatment plans those things wouldn’t be possible. Yes I’m chronically ill and its bad enough that I have to live with this debilitating disease called CRPS but I won’t be called things like a junkie, abuser, or addict when I have no other choices for treatment! I’m doing the best that I can do and it wasn’t my choice to become ill. So having to apologize for the treatment that helps me to be an active member of society is just adding salt to the wound. Please help to stop the stigma that has been built up around us! More importantly help us find the cures!
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!
Ten years ago I began this fight with chronic illness and I vowed to myself I’d never give up! That I’d never lose hope or let it stop me from doing the things I wanted to do. Unless you live with chronic illness then its hard for you to appreciate just how hard it is to get up each morning, knowing that your goal for that day will be to get through it in the least amount of pain! Some days are just an extension of the long nights with no sleep, fighting through the pain that wakes you with the slightest move if your lucky enough to fall asleep! I’m not saying all this because I’m looking for any type of pity but because I want people to see the reality of living with a “Invisible Illness”.
Chronic Illness is drawing attention at the moment under that term because people are finally starting to see it for what it really is. Its those symptoms that lots of people don’t see that make going through an illness like CRPS so difficult. Half the battle in bringing about awareness with chronic illness is changing perception of the public and how they view us! What a lot of people don’t stop and think about is that on the outside a person suffering with chronic pain can look very normal but on the inside their body is at war with itself. People don’t understand that I can walk into a crowded restaurant feeling fine but the noise sets off a trigger of mine which makes my pain spike! This then sends me into a tailspin for days and it becomes hard to function at very basic levels.
Did you know that in the U.S. 96% of all cases of people being dignosed with a chronic illness show no outword signs of their illness. What people need to know and empathize with however is that those symptoms that you don’t see can hinder a person from going to school, work, or even to just socialize. Now I know I mentioned before how dibilitating an illness like CRPS or other chronic illness can be but there’s a point to where I’m going with this. If a teacher doesn’t know that a student is suffering from a chronic illness that causes cognitive imparements then they become impatient with the student. That student might look and act normal most of the time and so on the outside things appear normal. If you educate the teacher about the student then the teacher can work with the disability.
So when it comes to work its largely the same in that things might seem normal on the outside but there can be something completly different going on inside. With CRPS I have a physical side to the disease that shows but you’d be amazed at how many people judge me and say “well its just a hand”! They miss everything thats going on inside my body and how its fighting itself. They miss how my nervous system has developed a mind of its own and how I’ve lost control of it. If we educate people on this however then the battles that we hear about in getting employers to recognize chronic illness become fewer.
The social side of a silent illness is a little different when it comes to understanding. A person who deals with chronic illness learns very quickly the various triggers that affect them and cause pain to be greater. I won’t get into the triggers because there are lots and for everyone they are different. What I will say is this, when we are trying to manage our symptoms we will do what we need to do in order to manage them. So when a person dealing with a chronic illness seems anti social and needs time alone let them. They are probably trying to manage their illness! Again its educating friends and family about this so that they understand whats going on inside that person.
So if you haven’t already caught on to the point of this post then let me summerize things for you in a nutshell. Its really about educating people on Chronic Life! If those of us living a life of chronic illness want to be understood then its our job to help educate and bring awareness. As a result of doing this then we will start seeing perceptions change and thus the hidden side of chronic life will become more exposed and less invisible!
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!
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!