Happy New Year to everyone! I hope all of you had a relatively pain-free Christmas & New Years and are finding things alright as you ease back into routine. The holidays are always tough for us to get through but we do our best using all of our coping skills. Good thing I have such a supportive family that understands all of what comes with my chronic illness. Luckily we spent most of the Christmas break at the lake so it allows me the escape that I need in order to manage through the Christmas season. I wanted to put some form of a post up seeing as I’m well past due to put one up.
Today I thought it might be appropriate to talk about food which I don’t often talk about when it comes to chronic illness. At this time of the year a lot of our family gatherings center around food and so it only makes sense to talk about food in a post around this time of the year. Over the last couple of years we’ve been trying to make a real effort to look really closely at what we are putting into our bodies as a family. Our reasoning wasn’t only because of my health but for the entire family overall. As we (or should I say my wife) started researching more about the science behind everything it really made sense that we had to start making some changes in the foods we were eating! Not that we ate really badly before but because I don’t want to be consuming things that aren’t suppose to be in my body.
When you watch the documentaries and read all the books on what our food is supposed to contain and what it should be doing to properly fuel our bodies and what is really being produced and the end results of what really ends up on the shelf it scares you. It really makes one think what is this doing to my body! I owe my wife a lot because the countless hours she puts into the research and the preparation are endless. Eating healthy is work just as going to the exercising is, and if you want to see results then you need to do the hard work it takes in getting to your goals. Making all these positive changes had a whole other side to it with me however in that it could only help in trying to manage my disease. For someone such as myself who deals with CRPS and Osteoarthritis one of my symptoms is severe swelling, so introducing foods high in anti-inflammatories like spinach, kale, nuts (almonds and walnuts), turmeric, and blueberries into your diet only makes sense.
With no cure for CRPS and a limitation to what treatment options are available to me, I’m left to look for ways in which I can help myself. There are several ways in which we can help ourselves. However food is one of those obvious ones that people have complete control over. So why a food post now when it’s that time of the year when all people do is eat? I’d love to say that I have this great big theory behind why I wanted to write about food today but I really don’t. Its something I’m trying to be more conscious of but lets face it isn’t always easy. However I truly am noticing a difference in how I feel! Now I notice that when I break down and eat that chocolate bar once in a while that I don’t feel so good!
When you actually start seeing the benefits of eating well you don’t want to revert back to your old ways of eating. I’m not doing any crazy diets or anything like that just eating the way that we were intended to eat. We’ve become a society that would rather get all of our vitamins from a pill rather than the food that contains those vitamins! Now am I against vitamin pills? No I’m not! But I’d rather get them the way that I should. Again I have to give all the credit to my wife who is the one in my family that does all the cooking. She looks at ways that she can cook for us that will give us the maximum benefit! How did I ever get so lucky as to have such an amazing wife.
I just makes sense to ensure that we are doing everything in our power to control whatever factors we can when it comes to managing your illness. I can’t help but think that so many of these autoimmune diseases that are being diagnosed today have links to food. With all the chemicals that are being put in our food how can it not! The changes we’ve been making are smart ones like trying to get rid of white sugar, and replacing white flour with chick pea flour. We cut back on gluten and our biggest change would be getting rid of things that have preservatives. It’s really getting back to more of a plant-based diet. It might sound like these changes are simple but don’t be fooled because it takes work like I mentioned!
In my next post I’m going to get into things a little more in-depth. This is a one of two posts so you’ll have to check back in a week to read more about my food journey! See you all right back here!
Today’s been one of those days where you try with everything you have to get things done but it just doesn’t work out! I got three quarters of the way through writing today’s post when my computer decided it was going to crash. There’s a reason that we are suppose to “save draft” and its most frustrating when you abide by that golden rule and your computer doesn’t do what its suppose to do! It really sums up the type of day I’m having but what can I do but laugh. There would have been a day where I would have let all of that really bother me. Ok! So it still really bothers me!
The last few weeks have been pretty hectic as I get closer to hosting CRPS Awareness Day! Last minute details are falling into place and I’m trying to maintain my health and everything that’s going on there as well. Nothing new on that front except for the fact that the revolving door of doctors appointments continues. I’m very lucky however to have a team of health care professionals working with me that care and are working to figure things out. I can’t begin to explain how it feels knowing that they are there for me when I need them the most. They have never given up on me! I always consider myself very blessed to have a team like this because I know this isn’t always the case.
This week I wanted to bring you a message that’s a bit different! I want you to read this today thinking about how important it is to support others around you who might be sick. This week I got the opportunity to spend some time with someone else dealing with CRPS who I’ve been visiting with from time to time. He’s fairly new to his diagnosis (within the last two years) and so he’s having to process everything that’s going on within this life changing event! Clearly he’s having a tough time in dealing with everything, and so I’ve been trying to go and just be that support to let him know that someone is there for him. Its a hard time for not only him but the rest of his family. For me its a flashback to the beginning and it brings back a lot of emotions that I had to experience at that particular point in time.
Then there was the person I spent some time on the phone with this week who’s been living with CRPS for the past nine years. She lives in a very small town and there’s nobody around her for support. She’s been unable to find a doctor in her area that understands CRPS, and therefore its left her feeling frustrated and desperate for help. If that isn’t hard enough her family isn’t supportive making things all the more difficult. After a short conversation I told her I would ask my care team if they would contact her to see if there is anything they can do for her. I couldn’t offer a lot but the fact that someone was willing to listen and try and help gave her hope that she didn’t have before.
So why am I bringing up both of these individuals? Because just like the people I have in my life they need people that aren’t going to give up on them. Nobody should have to take on an illness such as CRPS or any other illness for that matter and be all alone. All this week I’ve had a word stuck in my head and that word is community! When you look up the definition of community it reads “a unified body of individuals” that come together. Isn’t that what we should be doing? Coming together and helping each other when we need it. Let me clarify what I mean. I’m not saying that we can be there in every circumstance or for every single person that we come across that’s in the same circumstance, nor am I saying that we don’t already support one another. What I am saying however is that we need to make the extra effort when opportunity presents itself, even if it means putting them in touch with someone else.
There is just something so powerful about community! When we’re there for one another a strong support system develops! I can’t say how important it is to have that! I live in a part of Canada where resources are minimal and support for one another is hard to find. So those friendships that develop take on a whole other level. That’s what I’m trying to get at! Its that one person who you reach out to that has nobody around them for support. Or the person who’s newly diagnosed and scared but doesn’t know what to do or who to turn to! Having walked through all of that it gives me a voice to speak into their lives. I can share my experiences and story to help them navigate their way.
So I’m going to ask you this one simple question. Have you reached out to someone around you that might be dealing with CRPS? If your part of a chronic illness community then I want you to think about what it is that makes being a part of that community so special. Take it one step further and think about those in the community your in. Were they welcoming, helpful, or supportive? Probably all of the above! Wouldn’t you want that for someone else? Some of you reading this understand exactly what I’m trying to say. Its a simple message but one that is so important and vital in us growing as a CRPS community. When we come together things start to happen!
Hi everyone! Yes I’m still here although you’d never know it with how frequently I’ve been writing! I’ve been trying to get to posting but things are crazy right now and I’m trying to stretch myself in ten different directions. Never in a million years did I think that my advocacy efforts would take off in this way but they are. In a couple of weeks we will be holding CRPS Awareness Day(Nov.2) again and I’m happy to say that after only one year we are finally making a impact. Its been a really long road to get to this point but I’m positive that we are taking baby steps to create change!
As usual my health has been up and down one minute I feel good and the next I feel like I’ve been hit by a train! To give you all an update I’ve been dealing with a lot of extra pain in my neck and back as of late that’s been setting off flare ups with my CRPS. I’m working with my neurologist and team of care givers to figure all of this out. We don’t know a lot at this point however I am undergoing some testing. For the time being I’m putting all the tools I use to manage this illness into place in order to help me deal with the pain. With any luck I won’t need more surgery down the road. All I can really do at this point is pray and trust that God gives me the answers.
There’s no use in letting all of this drag me down because that’s not the way I live my life! I’m not sure if you ever truly wrap your head around everything that happens with a diagnosis of CRPS. God can however so I just give Him all the hard stuff to figure out! Yup this disease and everything it puts you through sucks! Without a doubt it will test you more than you ever thought possible! Sometimes however life doesn’t play by the rules and there isn’t much you can do about that. In a past post I said that living with CRPS was like climbing Mount Everest, you encounter storm after storm and at times trying to make it to the summit seems pretty much impossible. In my head I kept getting stuck halfway up the mountain as I was battered by storm after storm. For the longest time I felt as if I was pinned down by these storms as one after the other tried to knock me off the side of the mountain.
Honestly I really feel as if the weather has cleared and now I can keep climbing to get to the summit but its going to take work and determination to get myself there. For all I know there’s another storm around the corner. The will to push on has to come from within and that is something that can only come from me or you! When you find yourself up against storm after storm it can be easy just to turn around heading back down the mountain in defeat!
I know this message might seem a bit repetitive but I can’t stress enough about how much “you” the person dealing with chronic illness play a roll in getting better! You might be saying to yourself right now “but I can’t get better because I have no cure” however I don’t believe for a minute that you can’t. So why is it that there is no cure for CRPS yet I can feel so much better compared to when all of this began? Without a doubt the main reason is because I’ve asked for God’s help to navigate me through all of this. There were storms that I had to weather and it would have been impossible to get through them without His guidance. Did it mean that it made the storm easy to get though? No! Some of those storms have been the toughest things I’ve ever had to ride out in my life. What you need to take away is that God often has us walk through things like this to build strength or courage, and to learn certain things about ourselves.
I guess my question to you is this! Are you willing to do the work it takes to continue the journey and reach the top? Or are you going to turn and head back down the mountain? Its a hard place to be in and trust me when I say that I understand the fear of being stuck and all alone on the side of that mountain. Although you really aren’t alone because God hears your every thought! You just have to ask yourself are you willing to receive the help? I guarantee that He will help you on that climb but what I can’t guarantee is what that path might look like. So are you confused yet?
What I’m trying to say is that I can’t tell you what the rest of your journey is going to look like. You might have to deal with some stuff or go through a few more storms because God doesn’t tell us that everything is going to be easy all the time. What I can tell you is that a peace and strength has been restored in my life that I can’t even begin to understand! All you have to do is ask!
Today has been one of those days where your body reminds you that your still sick! So sometimes you just have to know when to give up and let your body rest. The last few weeks have been more than challenging and its times like these that make this illness so challenging. This won’t change how I face my disease just slow things down until I regain my balance! What’s really important right now is to rely upon my support system that’s in place. Family and fellow advocates are right there if I need them and I’m so lucky to have them there for me.
In recent weeks I’ve been having a lot of problems with not only flare ups but brain fog has been really bad. I have to admit that time for self-health and healing hasn’t been what it should be and I need to get things back on track. After eleven years I’ve learned really well to recognize when somethings not right, and that I need to get back to the basics of managing this illness. It’s a reminder that as much as quality of life has improved that I’m still dealing with a beast that can derail you at a moments notice if you don’t take care of yourself!
Chronic illness doesn’t take time off and so you have to make sure that your staying on top of the things that control the symptoms! Especially with an illness like CRPS where something so little can set off a major flare up. It seems as if CRPS has decided to turn things up a notch so I need to turn up my defense systems as well. That means a whole lot of self care and then turning to the biggest defense system in my life in God. I can’t say enough how much strength I draw from Him when things seem impossible! In fact I don’t often say enough how He’s helped my family and I through this journey.
Am I having a rough go of things right now? You bet! I feel at times as though I could crawl out of my skin. At times my nervous system goes crazy and the emotional swings I’ve felt in the last few weeks have at times been really hard to deal with! If I could tell the gerbil in my head to stop running on his wheel then I would. What doesn’t waiver however is my positive spirit! You see in order to fight this illness I need a small army to go to all the different areas that are at war in my body. Just like an army mobilizes various units to go fight in various regions or areas of a war, I have to do much of the same with my CRPS. I send one unit to deal with the pain and another to deal with the mental area of the fight. Then lets not forget that I have to send a unit to fight against my nervous system.
Mobilizing an army in this way takes a born leader one well versed in strategy and the ability to get the job done. God is that leader to me! His ability to strategize and bring victory is unmatched! When I’m battle weary He sends help to the areas I need provision in order to allow me to regain my strength to continue on. You have to have trust and confidence in a leader, even though sometimes the battles that you fight and where you find yourself being led don’t make sense. I have to have complete faith that God knows how to take on the enemy that’s trying to wear me down and win this battle. Your best line of defense is being under the leadership of someone who knows how to outsmart the enemy!
So with that being said I want to leave you with this one thing to think about!
2 Samuel 22:33-41
33It is God who arms me with strength and keeps my way secure. 34He makes my feet like the feet of a deer; he causes me to stand on the heights. 35He trains my hands for battle; my arms can bend a bow of bronze. 36You make your saving help my shield; your help has made me great. 37You provide a broad path for my feet, so that my ankles do not give way. 38I pursued my enemies and crushed them; I did not turn back till they were destroyed. 39I crushed them completely, and they could not rise; they fell beneath my feet. 40You armed me with strength for battle; you humbled my adversaries before me. 41You made my enemies turn their backs in flight, and I destroyed my foes.
Who do you want leading your battle as you fight through adversity? Mine gives me all of this and more!
Its been a rough go lately dealing with extra pain but somehow I manage to keep moving forward! A few weeks ago I traveled down to Huntington Beach to attend the Global Genes Rare Disease Summit. The stress of the travel was hard on my body and although I had to fight a lot of extra pain it was well worth it. There’s a trade off that comes with living a chronic life and I know there are others of you out there that understand what I’m talking about. Its all a part of me moving forward with my life and not allowing your illness to take all control!
I arrived home from the Summit changed but in a really good way. When your sitting beside a person who is one of only five people in the U.S. that has a rare form of cancer things are suddenly put into perspective. There was unique story after unique story each one impacting me in a different way. It was impossible to take away just one thing! If I felt inspired to do something about CRPS before, I left feeling as if I had to do all that much more! When I looked at the work that some people had been doing to raise awareness for their particular illnesses, I had to ask myself what am I really doing? At the end of the weekend we all went back home having gained 500 friends and a wealth of knowledge to take back to our communities.
I really feel I was able to make some strong connections and tap into some resources that will be useful here in my own community and province. Although its hard at the best of times to battle on with chronic illness I believe God gives us an abundance of strength when we need it the most, never giving us more than we can handle. With that being said as I left the conference knowing that I needed to be stronger in my advocacy efforts I came to the conclusion that no matter what I face or take on, God will provide in every way I need Him to along the way. I don’t want to be that person who says “I can’t” just because the path in front of me looks too difficult. I need to remember that God is guiding this walk and that when I’m lacking clarity or vision that I’m to look towards Him.
As I prepare to have the first ever CRPS Awareness day here for the Province of Saskatchewan I can feel my legs begin to tremble just at the thought of having to put this one day event on. Some of the people coming to this event hold important positions within our community and even our province. So sometimes I question my qualifications or I tell myself I’m way out of my league when it comes to taking this on. However nothing could be further from the truth. My qualifications speak for themselves having lived this illness for the past ten years! I need push forward because I have a testimony within my story that might just help one person find the care they need, or cause one Dr. to stop and think about how they diagnose and treat a patient. It might even be that one person from our government who comes to the event and is impacted. Leading them to say that we need to work on policy and legislation. Let me be very clear! All I’m saying is that by standing still I won’t create change!
Fast forward two weeks because this post was suppose to be up already but there’s just been too much going on and not enough time to do everything! CRPS Awareness Day went ahead this week and was a huge success! I’m not going to lie when I say I was a little worried that I wasn’t going to fill seats for my key note speaker but we were at full capacity and I think a few people other than patients walked away better informed of what CRPS is. The next day I was asked to speak at another conference and share my story with a group from within our health district. As much as I was nervous about getting up and doing it I knew I had to because we need to spread the word and make people listen.
Its not about being qualified! Stories bring with them power to change, whether it be my story or your story or someone else’s! It’s only when we move that we make a difference but you have to ask yourself are you willing to do it? Through sharing my story and all that has been thrown at me over the last ten years it is my hope that I will make a difference. All I can do is hope and leave the rest up to God!
Today I wanted to write something to encourage all of you out there who are struggling right now with your diagnosis. It might seem as if your world is spinning out of control and you might be asking yourself what do I do now! I want you to ask yourself a question. Are you happy? When I saw this video I said to myself its a perfect fit for what I want to talk about because it really says it all! Through all the pain, anger, and fear you need to get back up and fight. In some cases it isn’t going to be easy but with Gods guidance anything is possible! As the video says allow your heart to start beating again! Take baby steps one foot in front of the other and you can get there!
A word of advice! I really wanted to figure out where this journey was taking me but understand now I just needed to take the ride. I’ve turned that over to God and it’s brought peace in my life. I’m learning that bit by bit Gods greater plan is unfolding for my life. Sometimes the battle to get your mind and body back in the game, is tougher than facing the illness itself. When we get sick we just want everything to go back to the way it was. We tend to focus on the way things were and it can be really easy to become bitter and angry because we can’t have our old life back! Have you stopped to think for a minute that maybe this journey your on is for a reason. Maybe God has a plan for your life with bigger and better things but first you have to walk through some really tough things!
To often we listen to all those tiny voices that we hear in our head and it stops us from shifting the car from park into drive! I’m often reminded of all those episodes of the Flintstones I used to watch as a kid. If you don’t remember it then it was a cartoon set in the Stone Ages. The cars they drove in the cartoon were foot powered, and Barney and Fred would constantly forget to move their feet to get the car going. The running joke was why isn’t the car going anywhere. So the parallel I’m trying to make is that you have to keep your feet moving, if you want to stop yourself from getting stuck in the mud.
It might take some time to figure things out but don’t believe for a minute that your stuck where your at! You can’t be scared of running up against obstacles, or the times of frustration that you will run up against while on this journey. Look for the lesson from within each of those challenges, and if there is one learn and grow from them if you can. Some of those hard times that you face as you walk this journey might just change how you think about things from the past. Or it might open your eyes to new things that you never thought possible. Never in a million years did I see myself organizing a CRPS Awareness Day in our province and taking a roll in advocacy the way that I am. That being said I couldn’t feel better about what I am doing and the small roll I’m playing in trying to raise awareness. Advocacy has fueled a fire in me that wasn’t there before. Its fire to help people in whatever ways I can.
I’m not trying to tell you what to do in your situation. Absolutely not! I’m just trying to point out that there are things in my own life over the last ten years, that I’ve had to work on that I didn’t see coming. Ones that are taking me down a different road and as this happens I’m seeing happiness return. Do I know your situation? No! Can I relate to your situation? Yes! I do know that if I had stayed the way I was ten years ago then I wouldn’t be happy. I wouldn’t for a minute think of trying to tell another person what to do with there life and I never will. What I will do however is share my story with others and encourage. I really believe that when we support each other in these ways that we gain perspective. What you choose to do with that is your choice!
This is a simple message that I’ve given on more than one occasion but I think its important to keep giving. Its important because if I don’t remind myself personally every once in a while of these things, then I become stuck or my vision can become clouded. So I would hope that you see things in the same way. If your reading this today I hope it helps shed some light on questions you might have in your own journey!
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!
For several months now my health has been touch and go and I didn’t know if I’d have to get a refund on our trip to Cancun or not. I can’t tell you how many times it went through my head that this trip just wasn’t going to happen, even though I just wouldn’t admit it to myself. Looking forward to something fun for a change that doesn’t have anything to do with my health was a welcome change. Well I’m happy to say that in less than twenty four hours we get on that plane for a fun filled holiday full of relaxing on a beach doing absolutely nothing. Normally when we travel we like exploring the region and taking in all that destination has to offer. That won’t be happening on this trip. This time I’m perfectly happy to go and park myself on a beach and not move! Let’s just say my body won’t let me right now!
Now that we are going its time to get last minute details taken care of, and lets just say that there are a lot to take care of. Then there’s this here blog that would normally write a post from wherever I was going so that you can enjoy the same scenery as I am except for one small detail! That YOUR really not there! Not that I want to rub it in because I don’t. The only people I want to do that to are the friends and family that are back home in -30C weather spending day after day shoveling!! I regret to inform you that I won’t be able to do that this time because I won’t be on the internet. With what your paying for in an all-inclusive trip you’d expect that WiFi would be included, where they can make money however they will! So I won’t be bringing you any pictures until I get back. I’m hoping to get around to writing a couple more posts that will publish while I’m away but I’m not sure if I’m that organised this time!
From a pain standpoint things are up and down as always, with some just needing to find that alone time to calm down the nervous system. Those days are very few and far between when you have a nervous system that’s always on edge and doesn’t seem to ever calm down! Its the life that I have to live with and have had to learn to accept along with everything it brings with it. Nobody said this was going to be an easy road, and believe me what I’ve had to endure over the last few years has been anything but a walk in the park. In some ways I feel like over the past year its been one big character building exercise that I’ve been put through. As a result I feel like God has been building me into someone stronger more resiliant, ready to take on anything and everything.
Through this lengthy trial that I’ve had to walk through, I feel as though I’ve been discovering who I really am inside and the person that God created me to be. I’ve said this before and I’ll say it again but for the longest time I struggled with what was going on inside myself after being diagnosed with my CRPS. For starters I felt lost and like my self-esteem had sufford a major blow. I had just brought my daughter home from China and I questioned how I was going to be as a father dealing with a disability. Then there was the guilt of my wife having to not only watch me go through this, but to have to take on so much extra and not be a stay at home mom! As if that wasn’t enough I couldn’t stop thinking about what life was going to be like for myself in the future. All of these feelings took several years to deal with.
Somehow in the middle of all these storms and all the trials something changed and a strength and the ability to be extremely happy with my life has come about. How does that happen? In part two of this post I’ll be looking at that! So until next week goodbye and its off for some fun in the sun.
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.