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.

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!

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!