Straight Ahead

Have you ever had one of those moments where you were listening to something like your favorite podcast and something really profound strikes you. Well today that happened as I was listening to one of mine and I wanted to share it with you. The person speaking was sharing a story about whitewater rafting with his wife. As they headed down river the raft they were in flipped and all kinds of chaos ensued. The story carries on talking about how they came within inches of death however they eventually managed to reach shore safely.

After everything that transpired the last thing he wanted to do was get back into that raft and continue down the river, yet it was the only option because there was no other way out. He offered to pay the guide to have a helicopter fly in and pick them up but the canyon walls were too steep! There was no other way of walking out until they got several miles down river, and they had to face some very nasty rapids called the Devil’s Mouth! Facing no other choice they got back into the raft and continued down river.

So often the only option one faces while fighting a chronic illness is to move straight forward and take on the illness in a battle that most of us would rather not fight. We see that difficult path that lies ahead, and it scares us to the extent that we don’t want to get back in the boat. It takes every ounce of strength to tell yourself that your going to be ok, and not to let the fear of the unknown make decisions for you! It takes faith and believing in yourself to continue your journey through whatever you might have to face. Sometimes those roadblocks that stand in our way are there for reasons unknown but you can’t let fear stop you from moving ahead. Sometimes you just have to say  “I’m not going to let fear stop me from taking the next step” or from “accomplishing a goal”!

What I kept thinking through the entire podcast was I’m going through all of this for a reason! The pain, suffering, surgeries, and everything else CRPS throws at me! I know in my heart that I’m having to go through all of this so that something good will come out of all of it in the end. Even the ability to be able to speak into another person’s life is a powerful tool that I have been given. At the start of all of this I felt weak and beaten down. Now I feel as though I can take on anything life throws at me, regardless of what the challenge is. We don’t always see odvious things that are sittings right in front of us because we get too caught up in what’s happening in the now!

The message today is pretty simple sometimes we only have one choice and that’s to keep moving forward and face whatever lays ahead. You don’t know what might come out of your experiences!

 

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!


 

 

 

 

 

 

 

 

 

 

 

 

 

 

My CRPS Is Testing Me!

DSC_5745Have 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.DSC_5747

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.

DSC_5746For 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.

 

 

 

 

 

 

 

 

Seeing The Positive!

It’s been a while since my last post but I haven’t been feeling up to writing much over the last few weeks. It’s been a really rough go as of late and with my upper implant not giving me any relief, my pain levels have been pretty up and down. I’ve been having quite a few flare ups and trying to get them under control is taking up a lot of energy. My nervous system is so tightly wound up at the moment that it takes next to nothing to bring on a flare up! Add to all of this a cold that I’ve been fighting to get rid of a cold over the last few weeks and I’d say I’m not having a lot of fun at the moment.

It seems that over the last few months things have been more unstable when it comes to keeping my pain under control. With my upper implant not working properly, it’s like the CRPS is trying to gain the upper hand. Any opportunity it has to unleash it’s wrath on my body it’s been trying to take but I won’t let it win. This go around has been really tough but like all the other times I find a way to bounce back and get back on my feet. It’s exhausting both physically and mentally but the only way to win is to keep moving forward. As hard as it sometimes seems I know I’m going to win this fight because giving up isn’t an option. When your learning to ride a bike and you fall off what do you do? Get back on!

So enough negative for today because I don’t believe in staying in a negative frame of mind. Actually it’s morning now because there was a writers block that was going on last night so I gave up. As is so often the case with this disease you go into a mental fog a lot because of the medications and the illness itself. So rather than try and push through it, I just step back now and take a break so I don’t build up stress. So sometimes it means I have to space out posts because I’m just not clear up in the brain.

When your trying to overcome an illness like CRPS it can be so easy to only see the negative things that surround you. As a result people don’t focus on the positives they’ve got going in their lives and it prevents them from moving forward. So you see among all the pain and the difficulty right now, I’ve got some pretty good things going on in my life. Take my family for example. Before all this happened I was a huge sports person, playing sports like golf, tennis, hockey, and others. I have a daughter who shares a love of sports with me who is playing competitive soccer. Even though I can’t play the sport myself I get to live that passion for  sport through watching her play. Not only do I get to be a proud father watching his daughter play something she loves but watching her and listening to her talk about the sport fills a huge void in my life.

Recently I joined a group of photographers who post their photographs on a National Geographic site. It’s a great way to see other photographers amazing works, and it gives me some great ideas for my own work. An added perk though is that two of my photographs that I posted to the site are being considered for publication! It has always been a dream of mine to have a piece of my work published. Maybe that will happen or maybe it won’t but the very fact that its even being considered brings an amazing amount of joy to my life.

The biggest positive is that God is doing is there bringing me strength, joy, hope, and so many things as I walk through this journey!