Who’s Helping You?

It feels good today to sit down in front of this keyboard and write! Too often brain fog makes it really hard to put together a post as many of you know! With two young kids I also have to reserve some of the energy that I have for them. Lately however I’ve felt as if I really need to put some focus back on writing because I have a lot to say! So much has changed in the last few months and I really believe that we are on the verge of seeing some big changes happen in regards to CRPS!

Some exciting news on the front right here at home is that CRPS Awareness Day has been approved here in Saskatchewan and we are in the middle of working out details for the event that will take place here in Regina, SK on Nov.2, 2016! This is big news because for the first time those of us suffering from CRPS will be heard by dignitaries from within the government and medical communities. So keep coming back as I will be posting about things as we confirm plans! The goal in all this is to raise awareness and make people understand that we need resources and research to help those of us in need.

It isn’t often that I can say I feel good because most days are a struggle to get through. Ten years has had its toll on my body but like a Timex watch I keep ticking! Today I have to say that I feel alright and like I can take on most of the challenges put in front of me. For that I thank God! Without his guidance through all of this I wouldn’t have the strength or energy to keep going. When I started planning out today’s post I just kept hearing that it needed to be one that struck a cord with people! So this is the point at which you can either stop reading or carry on reading.

It isn’t often that I preach but today that’s exactly what I’m going to do. In ten years of dealing with CRPS numerous times I have needed Gods help and not often enough do I talk about how important He is in all of this. I get asked almost daily “how do you do it” or “what gets you through every day”. God gets me through every day! Whatever my concern I always rely on God because I don’t have any doubt in my mind that He will provide in whatever way I need Him to.

I don’t need to get into all the specifics that I’ve had to go through as I’ve walked through this journey. What I will say is this! Several times that I have faced adversity I have felt overwhelmed and alone. Sure I have family and friends supporting me but what I mean is that I felt alone in taking on this beast called CRPS. Family and friends can only offer so much support. My mind was being bombarded with questions that I quite simply didn’t have the answers to nor did anyone else! When I started asking God to help me with all the fear and questions, things started to change inside of me. Bottom line is that I got answers because I trusted Him for those answers. You just have to trust and believe that He will be there.

Psalm 46:1  “God is our refuge and strength, an ever-present help in trouble”

The single most important person in my life before anyone else is God. I stand by that and always will. Am I going to tell you that you need God in your life? Yes but I can’t be the person who makes that decision for you. I can share with you the things that He’s done in my life, that have changed and shaped me into who I am today. I might still be sick with my CRPS and look physically broken on the outside. However on the inside there is this strength and determination that has replaced the fear and uncertainty that used to exist. That is what God can do for you if you have Him in your life! Without question this was a fix from God.

I don’t know why I still have CRPS and why God hasn’t healed my body of it! I know that’s one of the questions going through your head as you read this. I do know however that there is a powerful testimony in all that my family and I have had to go through over the last ten years. God is the one who decides when things happen and what gets done.

Psalm 27:13 “Wait for the Lord; be strong and take heart and wait for the Lord”

I don’t have all the answers because if I did then I’d be God wouldn’t I! Why I have to go through so much I have no idea but I know that God is using it in a really powerful way! Without God in all this my life spins out of control! He gives me the strength to move on and do amazing things within my life.

Psalm 62:2 ” Truly he is my rock and my salvation; he is my fortress, I will never be shaken

Like I said to you before I can’t make the decisions for you, at the same time I’m not going to shy away from telling you about the importance of what He can do if you have Him in your life. This is a conversation between you and God so I’d urge you to look at where your at! Are you battling a chronic illness or CRPS and have nobody to turn to? If you are then God is listening all you need to do is take the next step!

 

 

 

 

Chronic Friendships!

It seems like forever since I’ve put up a post! Probably because it has been forever and I have to say I’m not proud of the fact that I haven’t found a way to make time. This blog is more than just putting words down to express myself along with the experiences that I’ve had to live through. There’s a relationship that’s been established with some of you out there and it means a lot and always will! As I’ve walked through this journey over the last ten years, I’ve realized that I’ve gained some amazing friendships along the way. Its made everything just a bit easier to manage over that period of time.

First let me just say this! The support I get from family and friends is simply amazing! Since day one my family has been there for me in taking on this giant of a disease called CRPS and for that I am extremely blessed. God has placed so many good people around me and for that there are no words. I wish I knew what to say to each and every one of you because the love and support you show me day in day out through this journey means the world to me!

Over the past few weeks things have been really tough physically for me, not to mention just how exhausting its been mentally! My pain hasn’t been easy to control and there have been all sorts of times where I could have just as easily given up.  That’s when my extended family as I like to sometimes call them steps up to the plate to help. These are friendships that have been established in the chronic world with others who are chronically ill. Without fail they support me and I’m right there for them when they need me. We are a support system for each other that doesn’t judge but rather tries to listen to one other and motivate each other through all levels of adversity. When things get tough we push each other to get through what seems to be the impossible!

Sometimes you just need that support around you from people who are going through the same things as you are! When you make friendships within the chronic world there’s this common bond that you share with one another, and so right away you can identify with one another. I don’t think there is any need to explain what that common bond is! There’s no need to validate yourself or everything your going through, unlike when your trying to talk to someone who is healthy. Borders and boundaries that often stand in the way come down and it can be easier to open up to one another. You share in each others victories and support each other through the adversity.

I can’t tell you how many times I’ve found myself discouraged and one of those friends shows up in my inbox with a kind word of encouragement. Or a text that inspires me to push through a day where the pain is super intense and I’m getting down on myself. What sets these friendships apart from others is in the ability to understand what each other is going through so very well. There are so many shared experiences in living and dealing with our chronic illnesses. Even when the illnesses are different there is still that common thread in what we’ve experienced, or what we have to walk through on a daily basis.

When I started this journey of mine ten years ago I never knew how important this community of friends was going to be. They motivate and inspire me to see past the roadblocks and barriers within my disability, and instead see that I can make so much more out of my life. So I want to take a moment to say ” Thank You” to any of you who have played a roll in any way. You have lit a fire under me to pursue advocacy for my illness CRPS, and chronic illness in general. 

Today I want to mention four individuals who I think we need to recognize for their leadership that they display within the chronic community. I want you to know that you are true leaders and that the tireless work that you do in raising awareness, breaking down barriers, or even helping others through their journey’s leaves me with no words! You are all very unique individuals that have been given amazing gifts to do great things with in your lives! I want to recognize you not only because of the amazing work that you do within your communities but around your country. You lead by example and when push comes to shove you are in the trenches fighting with all your heart and soul.

So those four individuals are Julie Cerrone ( itsjustabadday.com), Britt ( thehurtblogger.com), Anna Evangeline (sixhipsandcounting.com ), and Charles Mattocks ( charlesmattocks.com ). If you have a chance drop by their sites and get to know them a bit better then please do!

I could speak about each of these people and not run short of things to say about who they are and what they do for chronic illness. I’m also quite sure that there would be many who would back me in making this statement. I could get into each of their stories but that in itself is an entire post on each of them. Their experiences and own personal journey’s are amazing and will inspire you!

In closing I just want to say this! If you are fighting a battle with a chronic illness and have nobody to talk to then look around you and reach out to someone like me or one of the others I’ve listed above and we can connect you! You should not have to go through your illness on your own. Never say that there isn’t support because its right around the corner. You need to fight and be that person who never lets their disability stop them from accomplishing the hopes and dreams that they have in life!


 

 

 

 

 

 

 

 

 

 

 

 

 

 

Chronic Illness And Narcotics

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!

 

 

What is your roll?

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.

 

 

Checking your Chronic Illness Gas Tank!

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!