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!