Self-Advocacy

Self-Advocacy is….

The dictionary defines self-advocacy as the action of representing oneself or one’s views or interests. Expanding on this what it really means is learning how to speak up for yourself, make your own decisions, knowing your own rights and responsibilities, and how to get the information you need. There are slight variations in the definition depending on where you look but most are pretty close.

Why Is it Important

When your living with a chronic illness or rare disease being your own self-advocate can sometimes be necessary. If you don’t learn to speak up or obtain the information that you need, then it can turn into not getting the care that you need. Especially when you are diagnosed with a disease or illness that is rarer. There tends to be less the medical system can do in these cases, and so you need to be more assertive. I’m speaking purely from my point of view having been diagnosed with a rare disease. However, this speaks for pretty much anyone and should be a basic life skill.

Practicing Self-Advocacy

This can be the difference between getting the answers and care that you need and not. It really is this balancing act when it comes to how you advocate for yourself. If you find you aren’t getting answers then start asking questions and be direct, firm and polite. When something isn’t clear to you ask for clarification. At the same time, you need to be able to listen to and respect other points of view. We are all entitled to a basic level of health care. How we go about getting that level of care is important! Know what you’re talking about or the questions that you are asking. Have a strategy that you put into place in order to get what you want or need. Then, of course, have support through family, friends, and other patients/advocates.

Being Effective

There are a lot of ways that a person can be effective in advocating for themselves. I think one of the most powerful ways though is to believe in yourself. You are worth the effort that it takes to advocate for yourself and to be able to protect your rights. Setting clear goals for yourself will help you in being able to obtain what you want or need. Ultimately it comes down to you! Are you going to let others make decisions for you, or are you going to take control over the decisions that affect your life?

Self-Advocacy is a Lifeline

Whatever you do never give up! There are going to be times where things get hard and you face tough obstacles. Those are the times that you need to remember why you’re advocating for yourself. Keep at it and don’t be afraid to go after the things you want or need. Sometimes it’s going to take dedication, strength, and determination to get yourself the things you need. Not to mention a whole lot of God!

In Conclusion

Through my own personal journey, there have been times where all I’ve wanted to do is give up. The most obvious being the day I received my diagnosis. That day was a dark day! After almost a year and a half journey just to find a diagnosis I was told nothing else could be done. However, this is where being my own best advocate has helped me to obtain a quality of life that I wouldn’t otherwise have with CRPS.

I refused to believe that nothing could be done, and I started to do the research in order to obtain the knowledge I needed. Then with that knowledge, I started asking questions and we came up with a treatment plan. Things might not be perfect by any means because it’s a rare disease with little known about it. I fought for what we can do right now and I’m an active voice in my care and the decisions that we are making. That’s where the understanding on my part has to come in. There’s a limitation to what I can do at this point however and I have to respect those limits.

I leave you with this. When it comes to self-advocacy there are three things to remember and those are to know yourself, know your needs, and how to get those things that you need.

Surviving Christmas!

Merry Christmas everybody or should I be saying, Merry Christmas Eve. I wasn’t going to post a Christmas message this year. Then I decided that I couldn’t just let Christmas slip past without posting something. I love Christmas! Without a doubt, it’s my favourite time of the year. Our entire family gathers and spends time at our cottages on the lake. Our extended family is large and everyone comes home for the holidays. It really is special as we are a very close family.

Now as much as I love Christmas that doesn’t mean that it doesn’t come without its challenges. As well as being the season that I love the most it can also be one of the hardest times of the year for me. It becomes this balancing act of trying not to let my symptoms get worse and at the same time enjoy the time spent with my family. I wish I could say there’s a magic formula on how to do this but there isn’t.

Stress is an enemy to my body at this time of the year. Actually it’s my enemy all the time! So I do my best to keep it at a minimum however I might need to make that happen. This is the case with so many of us who live with chronic illness. With all of the visiting, parties, shopping, and everything else Christmas self-care becomes really important. This being said everyone’s way of managing those stresses is going to look a little different.

Although it’s this balancing act that I have to manage there are two things that get me through more than anything else. Family and all the support they give me is one. They understand the difficulties that I face at this time of the year. They also understand and accept all the ways that I have to adapt things in order to manage my way through Christmas. Without this type of support and acceptance, it would make it so much more difficult for me.

My faith, however, is the most important piece in all of this. I can’t speak for anyone other than myself. Without my faith, all of this is so much harder to navigate. So Christmas is all the more meaningful to me because I focus on why we celebrate at this time of the year. Knowing that I don’t have to fight this battle on my own makes it so much easier to keep going.

I’m not saying that I don’t have moments in this season when things can be hard. What I am saying however is that I’m choosing to focus on some really positive parts of my life that make this time of the year great. What are you choosing?

Running Your Marathon

Nobody said that running that marathon that you signed up for was going to be easy! As you hit the halfway mark your body begins to give you all the different signs that it’s being pushed to its very limits. Your legs begin to cramp and get sore, and your heart and lungs pick up speed in trying to supply your body with the oxygen that it needs. The more you train and prepare your body the less these things will affect you. Ok! So I’m sounding like some type of an expert! I’ve only ever run one so-called marathon in my life and that was a 10k when I was 16. Does that even qualify as a marathon? Lol! I hadn’t prepared at all for the run, and being the (know it all teenager I was), I drank two raw eggs figuring that would give my body the energy it needed.

So how is living with chronic illness compared to that of a marathoner? The relationship is through how you prepare mentally and physically. This might seem like a strange comparison but hopefully, I can outline things well enough that you can see the point I’m trying to make. The more I started comparing the two, the more I started to see similarities between running a marathon and living with a chronic illness. My hope is that you to see the comparison, and in some way take away pieces of it that might help in your own journey.

There are a lot of different ways that a marathon runner prepares for or even runs the race itself. There are three however that I really want to concentrate on in this piece today. Those are incorporating mindfulness strategies, finding a distraction, and building a support network. All three of these areas cross over from running into the world of chronic illness that we live in.

Incorporating Mindfulness

A runner practices what is called mindful running. This is where they connect their breath to their bodies. Don’t ask me about the mechanics involved with this! Although I think I can pretty much figure that out. Lol! When the two are combined performance is increased, injuries are prevented, and the experience of running is enjoyed more. How anyone can find running enjoyable I’ll never understand!!!

So when it comes to chronic illness this same concept of connecting breath to the body is used just for different reasons. In managing my chronic illness I apply mindfulness strategies such as breathing and biofeedback to help manage my symptoms and my pain. These breathing exercises help to regulate my nervous system which is a big part of the problem. They help me decrease flare-ups and help me balance out the other symptoms. In other words, like the runner who’s performance is bettered when they to use breathing techniques my quality of life gets better when I’m using them.

Finding Distractions

As I mentioned before I don’t have any experience as a runner and probably never will because of my CRPS. However, you don’t have to be all that smart to figure out that there can be physical pain associated with running. Most runners will tell you that they have to find ways to distract themselves from intense physical pain. After doing some research I discovered a runner who encourages his athletes to play a game called “One Shirt at a Time”. The basic idea of the game is to look out in front of you, find a line of runners, and count them. Then you start reeling them in or passing them “one shirt at a time”.

Just like a runner who suffers from physical pain, a person living with CRPS has to manage intense chronic pain. So you need to find ways to distract yourself so that you don’t focus on the pain. This is just another tool in my toolkit that helps me manage chronic illness. For me, that means getting absorbed in a hobby like photography. My love for photography helps me take focus away from the constant pain and try and direct it somewhere else. It doesn’t mean that I will be pain-free. The point is that this is all about mental attitude and the ability to take your mind off of the pain.

Building A Support Network

In both running and living with CRPS building a support network is important. When a person runs a marathon often they have friends and family to help them along the way. They might even be from within the running community that they may belong to. They place themselves at various places along the route and of course, show up at the finish line. The support along the way is a constant encouragement and can be the motivation that a person might need to get them through difficult times or just simply to the end of the marathon.

Like a runner, a person living with CRPS has to build a network of supporters as well. Again, this might be through family, friends, or through the chronic illness community. Even though the support might be shown in a very different way, the principles of encouraging and motivating stay the same. This is yet another tool that is vital if I am going to manage my illness. Whether its support from family or an online community of some type. That help becomes an important part of getting me through those hard moments when things seem next to impossible.

In Conclusion

Taking on an illness such as CRPS can very much feel like your running a marathon. There are times where you wonder if you will ever get to the end of the race. Both physically and mentally you push your body to its very limit just as a runner does. As you get further and further down the road on your run your body begins to tire, and your urge to give in can get so much stronger. Using these three simple tools help me keep placing one foot in front of the other. Am I going to reach the end of the marathon? There isn’t a doubt in my mind!

Been on Hiatus

Hi all! Chronic illness decided that it was going to unleash its fury on me for the past few months. So I ended up taking a break with my writing. Along with other things medications have made writing difficult for me. So instead of adding more stress into the mix, I decided just to take a little time away. Now its time to get back at it!

I don’t have any awe-inspiring messages for you. Although I wish there was! Lol! If I can manage to put something together that has any form of a message at all then I’m doing really well. My writing isn’t on the NY Times Best Selling list and it probably never will be. I write for the simple reason that it helps me express everything that I’ve had to walk through on this journey. Most of all, however, it allows me to share with so many of you who might be on a similar journey.

Okay! So the sharing side of things has been lacking a little lately. Taking care of “me” has to be the priority right now though. That might mean that I have to step back every so often when things get difficult. Things haven’t been easy over the last couple of months. The word “complex” would be an excellent choice of words to describe my health right now. So much so that there are days that I just want to wave the white towel in surrender. Although I refuse to ever do that!

Some days I just wish I was off on my dream vacation to Bora Bora! Relaxing in my glass-bottom hut watching all the fish swim underneath. Unfortunately, the closest that I’ll get to tropical fish swimming right now is one of those large fish tanks they often have in the waiting rooms of Dr’s offices. Lol! It is ok for a person to dream, isn’t it? With everything that’s going on right now, sometimes my mind just needs to escape and go to its happy place.

As I mentioned, things have become more complex with my health since May. Honestly, it has caused me to struggle a bit at times. Is it all related to my CRPS? At this point, I really can’t say because I’m still trying to figure out the new issues that I’m dealing without. So that will be an update for another time. Right now I’m feeling frustrated and run down by all the waiting and the lack of answers. In the meantime, I try to stay hopeful that those answers will come soon.

At times like these when emotions can get out of check. It’s a good time to stop for a second and take a look at the things that are going on inside. Kind of like when you take your car in for its regular yearly checkup! You have them check the oil, top-up fluids, and do any regular maintenance. With all of that, however, the mechanic goes a little bit further with the things he’s checking on. On the outside, everything might appear to be working fine. Until he digs a little bit deeper into the engine where they sometimes find those hard to diagnose problems.

Checking on how I’m doing emotionally is something that I know I can do a better job with. I have to be honest. Sometimes it’s just easier to push my emotions aside and say I’ll deal with everything later. Except for the fact that I often forget about the later part. Then I find things can build up over time and those small issues become a little bit bigger. In an effort to head that off today, I’m trying to deal with my emotions and tell you that I’ve been really frustrated lately. It would just be so easy if there was a switch to turn off all the negative thoughts that start invading a person’s mind when we go through things like these.

It’s like there’s this intense chess match going on in my head between positive and negative. All I can do is hand everything over to God. On more than one occasion He’s helped me get through some pretty tough times. Once again this is another area that I could do a better job with. I know that I can put my trust in God’s hands to help me with anything! However, sometimes the things going on around me cause me to get distracted and I forget to have that simple conversation with Him. It isn’t difficult! Yet we get so caught up in the day to day that we forget or make excuses for why we don’t.

Slowing myself down for a minute and grounding myself in what I know is true and can help me the most is what I need right now. If there’s any message at all its that I need to have that conversation with God and to ask Him to help me with any of the frustration that I might be having a hard time with. I know this post doesn’t have a lot to it but I’m just taking the opportunity to share with all of you how I’m feeling inside. A simple message is sometimes the best!

Finding your Inner Superhero

Trying to figure out today what exactly I wanted to write and put up hasn’t been easy. Its been a while since my last post but for good reason. The last couple of weeks have been tough, and have really challenged me mentally. So do I put up the one that speaks towards the conference in Dallas, TX that I was just at a month ago? Or do I speak towards the last two weeks that haven’t been easy for me and the rest of my family? I’ve decided that it’s going to be the later of the two. Honestly, it really speaks towards what’s on my heart right now.

Over the thirteen years that I’ve battled CRPS, resilience is something that I have become far too familiar with. I’m saying this because this past week or two haven’t been very easy. Once again I have been dealing with more health-related issues. No surprise when you deal with an autoimmune! This week I’ve found myself having to go into some form of superhero mode just to get through the day. Honestly, there really are times when I wonder if I possess superhuman qualities. Lol! Sometimes in dealing with my health, it really feels this way. The question is which superhero’s would those be?

The most obvious would be the classic American superhero Superman who uses his superhuman strength to fight crime. The only difference is that I use my superhuman strength to fight sickness. If you have ever read any of the comic books or seen any of the movies, then you might be familiar with his constant war on crime to defeat evil villains like Lex Luther. This arch nemesis of his is always creating a constant path of crime for Superman to fight. The parallel that I’m trying to make is that he uses his strength to fight crime, and I use my strength to defeat CRPS.

Actually, if you really think about it I guess you could say that there would be qualities from several different superheroes that one has to have in order to battle a disease like CRPS. There are a few that really stick out though and come to the front of my mind. I think about ones such as “Thor” who possesses this great superhuman strength, endurance, and stamina. All of which a person needs when they are fighting an illness of this scale. As each of us walks through our individual journey’s there are going to be trials that we come up against. In order to get through those times of adversity, there is no question that I have needed strength, endurance, and stamina.

Then there are the traits of the “Hulk” who possesses the greatest raw strength of any natural being on earth, and skin that can resist damage from heavy weaponry. There are going to be times that you have to go into “beast mode” when facing some of these difficult situations that you come up against. Meaning that you will need this combination of pure physical strength on one hand, and on the other a thick skin to minimize the damage that can be caused by the constant ups and downs of fighting a chronic illness.

I could make reference after reference to different superheroes (actually I couldn’t because my knowledge on superheroes is very limited) but I think you get the basic message that I’m trying to get across. Being sick sucks, and when things get bad you have to find a whole new level in order to keep the fight in you going. That means that what’s important is being able to find your inner superhero. As most of you know my faith in God is that superhero. What is yours?

There’s no real powerful message in today’s post. I’m just speaking from the heart at a time when I need to stay positive and fight through another issue with my health. This is when your mental and physical health is going to be challenged and it wears you down but you can’t give up. You need to put on your armour and go on the offensive. Pull out all the weapons that you need, and go into whatever challenges you might be facing with the attitude that you will come out on top.

As I bring things to a close today I want to leave you with this to encourage and support you. As individuals who are fighting through a chronic illness or rare disease we are: resilient, courageous, survivors, passionate, strong, empowered, self-determined, brave, hopeful, motivated, resourceful, optimistic, and patient. When the fight gets difficult I remember that I have all of these within me and so do you!