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!
The first thing I want to pass on to everyone is a big Merry Christmas! In the next few hours I’ll be headed out to the lake where it truly is a winter wonderland, to celebrate Christmas with all our family which are too many to count. I also hope that all of you are getting through this holiday season without too much pain. This is that time of the year where things get a bit crazy in the chronic world! Schedules get crazy busy and stress levels increase causing lots of extra pain. It can be a time of the year that spoonies just want to forget because its such a taxing time on your body! Christmas in the chronic world can be filled with so much pain and suffering!
Honestly I struggled with what type of a post to put together because usually I put together one that speaks towards how to get through the Christmas season! I felt it was more important to put together a message with hope and encouragement, especially at this time of the year when people are feeling so discouraged. I get it because I’ve been living it! I’ve had those moments when you just want Christmas to be over, and your just barely hanging on for dear life. I understand just how much strength and determination it takes to battle through Christmas with all the extra stress.
When it comes to a message I wanted to keep it simple, and I’ll be open and honest. Like I’ve said before I put my life in Gods hands and let him shoulder everything in my life. So the key for me is allowing God to be the driver in my life. When things get hard I turn to Him! When I feel alone in this fight I turn to Him! When I think that I just can’t carry on this fight I turn to Him! See its pretty straight forward isn’t it! Yes absolutely there are things I have to do during the Christmas season to make things just a bit easier to live with my chronic illness. However only God can provide all our needs and you have to be willing to trust Him with your life! So at Christmas I trust Him all the more when things get difficult. Do you? Merry Christmas everyone!
Hi again! Christmas is right around the corner and it’s coming quickly! It’s the time of year that is so difficult for so many of us! Why? It’s taxing on our nervous systems and we have a hard time keeping the stress levels down or the triggers that set off our pain. So let me just say this! If you have a friend or a family member that deals with CRPS or chronic illness, keep in mind that this might not be an easy time of the year for them. I feel as though this has become a message that I try to speak to every year because it’s important! We are trying and want to enjoy this time of the year but it just isn’t easy for us. So I guess I’m saying be patient and supportive of those around you.
The last week has been full of lots of ups and downs on the pain front, and I’m doing what I can not to fall apart. Like every other day however I battle through and get stronger with every passing day. My illness might be holding me back in a physical sense but I know that from the inside out I’m only getting stronger, smarter, and wiser. I have been affected by CRPS for ten years now and in so many ways its forced me to become stronger. Why? If I’m not stronger in how I battle through each day then slowly the illness breaks you down and over time it could lead to depression or worse yet suicide. So every day I wake up and the first then I do is ask God to give me the strength because I don’t know where else I would get it from. Not only the physical strength to get through every day but the mental strength as well.
As I’ve walked this journey I’ve also become a lot happier because I’ve been able to learn from all the struggles that I’ve had to go through. Lets face it over the time that I’ve had to live with CRPS there have been more than a few ups and downs. There were days where the journey seemed all too much, and trials that have felt nearly impossible to live through making it hard to be happy at times. There were certain times I took on a defeatist attitude and chose to go to a negative place, believing that happiness wasn’t going to be possible. When I really think about it, those beliefs were coming from a place of fear. One in which I probably chose to shut God out sometimes because it was easier to give up and feel sorry for myself, than to trust that He could bring a renewed strength, happiness, and wisdom when I needed it. If I wanted to change this and stop it from happening, then I needed to have an even stronger “all in” attitude and trust that He would provide! Its taken time and a continued effort but slowly I’ve started to see things change. There is a peace I didn’t have before and I’m happier than I’ve been in a long time.
I’ve been fighting this war against CRPS far to long not to know that there might be other trials I come up against down the road. The difference is that I am prepared to face them if need be! My confidence is stronger and I have become so much wiser to Gods promises in my life. Its taken a lot of hard work to get to where I’m at today. Putting in the effort to learn about my CRPS and how to manage to live a “happy life” with my disability hasn’t been exactly easy. Sometimes it’s taken falling down and getting back up to learn how to cope and manage but I’m all the wiser for it. There have been so many hard and sometimes painful lessons that I’ve had to go through. All of them in their own little way however have helped me to open my eyes and see things in a different light.
Living a chronic life hasn’t been easy but its changed me for the better! I say this because in a lot of ways I appreciate life way more now more than I ever did before!