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!