Why do I Advocate!

Well last weekend we had CRPS Awareness Day and it was a huge success! It was a great way to kick off #Nervember. In case you didn’t realize November is CRPS Awareness month and we do everything in our power to try educate those around us about this disease! As I mentioned it was an extremely successful event but it’s taken the last week just to recover. Week two and I’m still trying to find my way back to normal! Now all this being said I don’t want to make it seem as though all this effort wasn’t worth it. Every bit of awareness I can raise is going to help us in the various areas we need to create change or in specific areas that need more awareness.

Often people ask me how can it be worth putting yourself through the flare ups that you go through as a result of pushing yourself to hard. Today I’m going to share with you the reason I do what I do in advocating for CRPS. I received an email today from a doctor here in the city that I live in. As I read through the email it thanked us for a great effort and evening full of education and awareness. Then I got to the last half of the email and almost fell over! It explained how they would be introducing curriculum to second year medical students about CRPS, and making changes to the chronic pain curriculum! This is huge! We need to be encouraged because it brings hope to those around us that if we raise our voices we can create change. You need to understand that no matter how big or small your efforts are that you are making a difference.

When I advocate for CRPS I think about all of the other people I know who are affected by this disease besides myself. They drive me to see beyond my own pain and to be a voice that advocates for change and breakthrough. Every patient should have a voice yet there are some who deal with so much pain that they are unable to express themselves. Those are the individuals that motivate me to keep raising the bar and speaking up for our cause. Even though I have to deal with all of what this illness throws at me I still have the ability to speak up and raise my voice.

The need for early diagnosis is another reason I’m so driven to advocate! The sooner you get diagnosed and start treating an individual with CRPS then the better the chances of reversing the symptoms. I was diagnosed so late (almost two years into the disease) that it makes trying to reverse the symptoms so very difficult. I will never say impossible but certainly it becomes more difficult when that amount of time has gone by. I want to share what happened to me not as a negative experience but one that educates and arms others with information I have gained in order for them to get a quicker diagnosis.

If we don’t understand or know what the disease is then how do we move forward with treatment and finding cures. There isn’t a single day that goes by where I don’t have to explain what the disease is at least once. Its exhausting and a little bit heartbreaking because it shows me that people still don’t know about CRPS. So when I see things like medical students having curriculum added or more people being educated it gives me hope and inspires me to make a difference! When funding for education and research are virtually non existent here in Canada then that tells me that I have to try harder in having my voice and ours as a community heard.

When people ask me how many people have CRPS in the province of Saskatchewan or in all of Canada, I answer them with the all to familiar answer of “I don’t know” out of frustration. If there is a number for here in Canada its hard to find! When you go online to search the disease your lucky if you come across a website that is current. Again another reason I want my voice along with so many others to be heard. If we just sit back and be complacent then we are never going to see any of this change. The patient voice has power but only when we speak up as a body who believe that we can bring about that change!

So I couldn’t think of a better way to end this post except to share with you two people in the U.S. who excel at being a voice for chronic awareness. Ken Taylor & Barby Ingle of International Pain Foundation who’s pictures for their #NERVEmber campaign you’ve been looking at through this post. I first met Barby at HealtheVoices17 in Chicago and the amount of passion and energy in her advocacy efforts amidst her own battle against multiple illnesses was infectious! I have met Ken only through the technology of computers but his energy and passion is equally infectious! These are two leaders that have a clear vision when it comes to advocacy and we need to have that same passion and desire. I encourage you to drop by their site and see not only what this months initiative is all about but to gain some inspiration into the work they do and what you yourself can get involved in when it comes to advocating!

 

 

Growing the CRPS Community

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!

 

What Direction Are You Headed?

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!

How Do You Navigate Rare Disease?

Today’s been one of those days that finds me moving just a little bit slower, and feeling just a bit more pain than normal. Par for the course in a life that I’ve come to know and accept. Every day is a new adventure and like I tell so many of you, never expect your day to turn out the way you had planned it. I’m not trying to be negative in what I’m saying but I’m just being realistic as a person who’s living with CRPS! Today’s adventure is to sit down and try and maintain focus on putting together this post. With any luck I get this done!

When I sat down to write this post I had a completely different post in mind. At the same time I was thinking about another message that’s been nibbling at the back of my brain. It has to do with the whole area of how we handle having a rare disease. Yes it frustrates me to death that so many of us get lost in the shuffle and are often left to navigate our own way through it. This is something I find comes up over and over again with patients fighting rare disease, and won’t change unless we are helping in trying to facilitate change. Not only within my own disease but within other rare diseases as well. Desperation is pushing people to their extreme limits and it just comes out naturally in aggression and frustration. So often though that anger and frustration has a negative affect on how we handle living with our illness.

Although I completely understand why those feelings are coming out and have had to deal with them myself, we need to find ways to focus that anger in a positive constructive way. At the beginning of my diagnosis I was angry and wanted answers. So I expected that “all” physicians should be know what CRPS was, and that they should have been able to give me the answers I needed. They are doctors after all! At the time I had no compassion for physicians and that they don’t always have the answers. Clearly as times gone by I’ve discovered that there’s a need to educate and raise awareness! I discovered within myself that the anger that I held inside myself wasn’t going to get me anywhere, and that I needed to take a good hard look at how I was seeing and dealing with all of this. Instead of putting this giant blanket over “all physicians” and their understanding of my rare disease I needed to see it in a completely different way.

There was so much frustration and anger at the beginning that I couldn’t see what was right in front of me. The need to educate and work “with” the medical community and different government levels. It was very clear when I looked outside myself that I needed to change how I was approaching all of this. Why not put the time and energy into working with the physicians, members of government, and the research groups! There are great physicians and members of parliament or government who are willing to work with us and do know about the things we face. It’s a matter of finding those people and then teaming up with them to educate and create awareness. Am I saying not to get frustrated with that physician or member of government who doesn’t give you the time of day? Absolutely not! We are going to experience those emotions time and time again. The question is what are you doing to harness those emotions and then turn them into something positive?

So how do we flip all that anger and frustration around and create something good from it? Maybe it’s as simple as sharing your story. Our stories are a powerful tool for teaching and educating those around us what is going on with us both physically and emotionally not to mention creating awareness. In the last few years I’ve started sharing my story with medical students, nurses, and members of government. From that other members of the medical community and government have reached out to ask me to share my story. I’m saying all of this in order to get you to see that by simply sharing my story in various ways to different groups I’m making some kind of a difference. It’s a very simple yet powerful way to have a positive affect on bringing about change.

Another way would be to take part in things such as clinical trials and different research studies that will help those studying rare disease to find answers that might eventually lead to cures. There are all kinds of organizations and people that can aid us with research studies. At the same time there are certain rare diseases where there are opportunities for research because not enough is being done. Maybe there’s an opportunity for you to play a part in raising awareness for research. Whether it be getting involved somehow with the research itself, or maybe you get involved in a fundraising campaign of some type. There are so many ways that we can channel all of those frustrations that we face in living with rare disease. However it is a choice that each of us has to make! The question is what are you choosing to do?

For myself the choice is easy because I’m looking at the bigger picture of all this. This isn’t just about myself! I’m choosing to get involved in all the ways that I do because “all” of us need answers. I care about each and every one of you who are sick and only want to see you get better. The way we do that is by coming together as a patient body fighting together!

 

 

 

 

 

 

 

 

 

Where’s Your Frame of Mind?

Things have been a blur the past few weeks because its been so busy! The month of June is one of those months where you both love it and hate it! With the school year coming to an end we have all the usual year end things happening and at the same time we can’t wait for summer holidays to start. Just get me through the month and all will be good. Throw in the tail end of our cottage build and finding time to practice self care has been really hard. I just have to keep telling myself I’m almost there!

I’m going to be honest with you and tell you that today I’m not doing so hot, and doing everything I can to fight off pain and keep myself functioning. Sometimes I think that this is when I do my best writing however because it helps me tap into the reality of what I deal with every day! I have always tried to live life with a chronic illness with a positive attitude, to be an example to those around me that life is still great in so many ways!  That will never change! I promised myself one thing when all of this started and that was to make a difference in other peoples lives! To learn as much as I can about CRPS and take that information to as many people as possible, being a voice in the process to those affected by this illness!

Sometimes this disease gets the best of you and it takes nothing to get mad at it! Why? Quite simply because every single day it reminds you that its there and that its trying to steal from you. The key however is that I won’t let it. Even on days like today where I’m having a bad day with pain, I focus on being positive and not letting it steal from me. That’s where surrounding myself with people who are positive and help me to focus on the good things is so important. I can’t stress that enough because it can be so much easier to pick out all the bad stuff that’s going on. I try and look at all the good things I have in my life like my faith, family, or circle of amazing advocates that I have around me. They’re always there to pick me up when things get really frustrating and when I want to naturally go to that negative place!

I’ve also said it a million times and I’ll say it again and again God is the single most positive influence through all of this. When nobody else can be there in those really hard times for me He can be! I’ve said a lot of prayers through this journey and will continue because I know He hears them all. When things seem impossible at various times He makes them all very possible. Too many times I didn’t have the answers or the obstacles that were in front of me seemed just too difficult to get passed! However every time I ask God for help a path or a door opens for me to get through or that answer becomes quite clear. That isn’t chance or something random that happens. That’s God answering prayer!

Some of my fellow advocates have gone through journey’s that seem just too unbelievable to be true! I don’t see them that way at all. Often some of those stories have brought people really close to death. I look at them and see a testimony that a person has and the power to speak into someone else’s life. This again is God working through a person and using that person in a certain way. I know talking about faith isn’t very easy for some people but for me it is because I believe in the things that He has done and is doing in my life. I have experienced first hand the way that He works in my life and through others. So when people tell me that they are all alone I tell them that your never alone because the truth is that you aren’t!

I always tell people that even though I’m going through all of this every second of every day I couldn’t feel stronger on the inside. Again I believe that this is something that God has placed within me in that He has enabled me to face or handle anything! There are days like today where its a struggle and that the pain is intense, but God never said that there weren’t going to be hard days or ones in which we don’t have to face adversity!

Together We Thrive!

Well after an exhausting weekend in Chicago at the HealtheVoices17 conference I came back with renewed vision and refreshed ready to get back into the trenches of advocacy! Did I ever leave? No you never stop! For the last four days I’ve met with advocates from all over the world! Yes we had advocates join us from as far as Australia, Taiwan, Argentina, Brazil, and United Arab Emirates at the conference. It was a pretty amazing group of people and I can’t tell you just how much they inspired me! The theme of the conference was “Together We Thrive” and I couldn’t have walked away this weekend without feeling more as if I now have this extended family in my world of advocacy.

Without a doubt the weekend was crazy powerful with so many amazing advocates from across different patient communities. Such a great opportunity to learn, grow, and support one another. The support started with Janssen US and the other sponsors who funded everything for all of the patient/advocates to be in Chicago for this conference. A huge thank-you for believing in us! To the TonicLC team I couldn’t have been more blown away by how great a job you did in putting on this #HealthEVoices17 conference. So often as a patient/advocate your efforts are largely unheard and you feel as though your that small fish in a very large ocean. It was refreshing for a change to know that our efforts were being recognized, and to hear companies like these say that “we were teaching them”!

To the new friends that I made and the ones I didn’t get as much time as I’d have liked to over the weekend, I thank you all for inspiring me in the ways that you did! I’m missing so many of you already but at the same time looking forward to working with you in the future. Its important to remember that “Together We Thrive” and so I encourage all of us to stay in touch with one another. As we all get back into the trenches and get back to advocating for our various causes remember that we are powerful together no matter what the cause. Don’t be afraid to reach out to those around you who inspired you and ask for their advice. At the same time make sure that you take those who are around you and raise them up! Encourage, motivate, and help to empower them in their own advocacy efforts.

At #HealthEVoices17 we were able to learn so much about the powerful tools that we have at our fingertips to aide us in our efforts. They are only powerful however if we put them into use! So I encourage each and every one of the 100+ advocates that were there over the weekend, to take what you were able to learn and apply it in the ways it will benefit your cause. We need to understand that partnering together is only going to make us stronger as patient/advocates. Before you do any of this however remember that self-care is your first priority. This was something that was front and centre at the conference! We were urged to make use of the quite room or take the opportunity to go back to our room and watch the live stream as we rested. Remember your a patient first and need to take care of yourself first before any of your advocacy efforts.

This was a weekend that had so many levels to it! Trying to pick out just one highlight is a really hard thing to do. On Fri night we had an “Open Mic Night” and all I can say is that you had to be there fully appreciate just how raw and real things got! What was suppose to end at around 9:30pm ended up going until 11:00pm! Its hard to describe the feeling but it was clear from day one that that no matter what you were dealing with, that you were part of this larger extended family that supported you and would be there for you in the future. We laughed together and shared experiences with one another, as well as having several moments where our emotions got the best of us producing the odd tear!

We can learn so much from one another as patient/advocates! Being able to speak to other advocates and the communities they belong to, as well as hear about the challenges they face is a great way to learn and grow with one another. It allowed us the opportunity to see if there were things in which we could add or change about our own efforts. Every moment right down to the meals together was pretty special! The entire weekend left me pretty speechless.

It really was an honour and a privilege to be asked to be a part of this conference this year. We walk away impacted and changed in so many ways!

 

 

 

 

Back to Basics!

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!

 

  

A Spoonie Isn’t A Kitchen Utensil!

Today’s challenge will be to try and put together two articles I need to write combined with a very busy family schedule for today. It’s going to take every available spoon to get through the day but I’m confident I can do it. So you might be asking yourself what is a spoon? Well in my world the term spoon is making reference to the amount of energy that those of us who are chronically ill have. If that’s not confusing enough patients fighting chronic illness commonly refer to one another by the term “spoonies”. Confused yet? This all has to do with breaking down your day into manageable pieces through using spoons. Still confused? Let me shed some light on all this.

Today I want to talk about something that I think is a huge part of pain management that so often gets missed. If we are going to manage our pain effectively then breaking up our day into manageable pieces is crucial. Its like running your car with no oil! You will eventually do damage to the engine if you run the oil dry! So if you use up all your energy or “spoons” then you’ll find that the same thing will happen. You start to push yourself beyond your limits and end up setting yourself back. I use to push myself really hard because I just wanted life to be back to what it was before getting sick! This is something I have to still work at because sometimes I can’t always make the choices I’d like to and because of that I end up dealing with flare ups.

I know some of you are reading this thinking I’m crazy! Where did all this talk about cutlery come from and it makes absolutely no sense. When I first started hearing other people diagnosed with chronic illness talk about “spoonies” and “spoons” I had to wonder! Then I did some digging and found The Spoon Theory written by Christine Miserandino. If you want more information then I’d urge you to drop check out her site and it will explain more of how this theory was born! I think if your going to understand those of us that are sick better then you need to understand some of the terminology that we use.

So what are we talking about here? On any given day I only have so much energy and once my spoons run out I’m done for the day. It’s a way for those of us that are sick to manage our day in a very effective way. What this does is cause you as the one who’s sick to think ahead as to what effort its going to take in managing your day to day. In my case maybe its planning out that school concert of my daughters that I have to go to tomorrow. If I know that its going to take half of the spoons that I have for the day, then I have to make a plan for getting through the rest of the day with the remaining spoons that I have left.

The theory itself is really common sense in understanding that certain things are going to cause us to use up our spoons faster than others. So its trying to find that balance in order to get yourself through the day, so that just maybe you have one or two spoons left over! Now I know there are some of you thinking isn’t it just as simple as making up a schedule for the day. It isn’t that easy when your sick because you never know what each day is going to throw at you! There are days where it can take every ounce of strength to do one simple task.  I can’t wait for the day where I don’t have to manage my day in this way. For now I do though and it helps in reducing the number of flare ups that I have to deal with.

What I find is that so often we push ourselves past the point of no return with our pain and then we end up paying for it. That desire to do just that little bit more or for things to be the way they used to be takes over. This often sends our bodies into survival mode causing spikes in our pain and this vicious up and down cycle of flare ups, and so instead of being able to manage our illness we no react to it instead. I know that what I’m writing about today isn’t some complex theory or ground breaking discovery into a cure for a disease! I do however think that it’s a very important aspect of pain management that we need to be using.

At the end of the day it comes down to me doing everything possible to fight back against my illness and improve the quality of my life. Counting spoons is just another excellent tool to add to the toolbox!

You Hold The Power To Create Change

Happy New Year everyone! The very fact that your reading this means that not only “you” but “I” managed to get through the holidays! Yes its a little past New Years but everything in my world goes at a slower pace! It’s a new year and I’m looking forward to renewed health and wellness for all of us that are suffering from chronic pain. For me personally it’s been a challenging few months battling a few symptoms, that lately seem to be in a constant state of flare. However it doesn’t change how I approach this illness, and I continue to remain optimistic and hopeful. At the same time I’m feeling the need to take a time out and rest my weary body.

In starting out the year I need to refocus and get back to basics which is looking at myself, and to know that the single most effective way to beat this illness is held within me. I’ve been digging deep within myself lately asking myself how I’ve been able to get as far as I have in this battle against CRPS. When things have seemed impossible they’ve been made possible and to that I need to give credit to God for being there through it all. My brain starts to hurt when I think of the number of times when things were too tough to handle, or when the roadblocks I faced seemed next to impossible to get past. Every time though with strength, determination, and a positive attitude I manage to get through whatever situation I’ve faced. Once again I have to give credit to God for giving me all of those things.

Attitude and how we approach our illness is huge, and often I think we can find opportunity to do a much better job at this. I want to be really careful in how I word things because my intention is to make us think about how we approach our illness. Some things are not in our control and I realize that! So there are variables that of course are going to affect how we think, approach, or even act on our diagnosis. That being said I always think there’s room for improving. So what I’m saying is look within your own situation and really ask yourself is there anything you can do differently, or change about your attitude or how you handle your illness. Its a really tough question because this is where some of those variables come into play. You may have had bad experiences with physicians or family members that just don’t understand what your going through. So my question to you would be this. Is there an opportunity to have grace or forgiveness in that situation? Or are you holding on to anger and resentment towards them? I use these two examples because these would be the two that most of us can most easily relate to.

Both these areas do hold opportunity for use to change our attitude, and although it might not be very easy it might just make walking through your journey a little easier! We get so caught up in some of the things that are out of our control that it stops us from seeing that some of the answers are right there within us. Not to mention that it can cause a huge shift in our attitude! That doctor who’s working really hard to help us in a really crappy situation isn’t responsible for us being sick. Yet often anger and frustration often gets directed towards them just because they can’t provide us every answer “you” or “I” want. Even when we come up against that physician or specialist that doesn’t know about our illness or doesn’t treat us the way we deserve to be treated. There’s an opportunity right there in how we deal with the situation that may arise as a result! Try to look at things from a different perspective because maybe just maybe some of the answers aren’t as cut and dry for them as they may seem for us. We get so desperate for answers however that we lose perspective of that because we start letting our emotions take over.

Believe me I get it! All I’m really trying to say is that sometimes we miss what’s right there inside of us. We hold this incredible amount of power within ourselves to change the entire outlook of our diagnosis. Along with changing how we manage every day life within our illness. Do you get what I’m trying to say? The question is this! Are you willing look within yourself to find it?

 

 

 

 

 

“The Crisis”

 

Last night was one of those typical nights where you toss and turn trying not to lose your mind! With pain levels spiking because of a flare up there wasn’t a whole lot to do but do what I do every night in praying that the pain eases. Nights like last night are typical of someone who deals with CRPS, Rheumatoid Arthritis, Autoimmune Disorders, or any other chronic pain condition for that matter. The last thing I wanted to do today besides wanting to crawl into a corner and rock in the fetal position, was tackle the very simple task of every day life! Most of you get up you have a cup of coffee and then you go about your day. For me I wake up take twenty pills to ease my pain and have to carefully plan what I can and can’t do, or what will expend to much energy causing me more pain!

I’m passionate about standing up for my fellow survivors who live with chronic pain! So the waters I’m about to enter today are solely my own views and nobody but mine! Just want to make it clear so that there are no misunderstandings. I’m writing this from my view as the chronically ill patient! Over the last little while the whole opioid crisis has been drawing a lot of attention and I just want to express my opinion of this whole issue. Governments are wanting to take opioids away from chronic pain sufferers and it would be a disaster waiting to happen.

There is a tremendous amount of fear and anger out there in the chronic pain world because of what I will refer to as “the crisis” in this article. I along with others don’t take them out of choice but out of necessity to manage and have the quality of life that I do. Yet some people would be quick to label me as an addict! I do my best to take low dosages and use alternate methods to manage my pain where possible but the reality is that not all alternate methods will work to relieve my pain.

These in my opinion are not the actions of someone who is looking to abuse medications. If I could get rid of my medication and the pain today then I would! Believe me when I say ten years of pain has been long enough! I’m not looking to take the next pill or the other 20 others I have to take throughout the day!

Patients are getting passed from physician to physician in looking for treatment and diagnosis. This makes the patients look as if they are just bouncing from doctor to get the next Rx or get their next fix! As a patient advocate and someone who’s been through the revolving door of doctors nothing upsets me more than to see us being viewed in this way! Why is this happening? Ask anyone suffering from chronic pain and they’ll tell you their desperate for answers and treatment. I think we need to focus more on research for cures and alternate treatments!

As a patient with an illness that has little known about it and no cure in site what are my options? Not many! Sure this is where lots of physicians get stuck, and whip out the prescription pad saying “here try this but I can’t help you any further” leaving the patient with no other choice but to source another physician. I’m lucky enough to have a team of doctors who don’t do this and carefully monitor my medications and try where possible to decrease if they can. They see the need to balance the use of opioids in order to control the pain in conjunction with sourcing other methods of pain control. I’m lucky that for the most part this allows me to function throughout the day!

Taking opioids away from the patient that is suffering from chronic pain and is chronically ill in my opinion will only make “the crisis” worse and cause more patients to become desperate with even fewer choices! Thus leading to higher rates of suicide.  If we can come up with cures and treatments then hopefully chronic pain patients shouldn’t have to rely on these medications as much. Not giving me any voice however doesn’t help to solve the problem. The patient needs to be a part of the overall solution!