Saturday, September 22, 2012

Congratulations... your permanently disabled

Be Careful What You Ask For

Have you ever asked for something, only to get it and think -
What the heck??
For the past five years I have been fighting in one form or another. The list is not exhaustive and the names of individuals have been removed to protect the innocent (and not so innocent):
  • Doctors
  • Compensation Boards
  • Disability benefits providers
  • Doctors (I saw so many I figured I'd best list them twice)
  • Government benefit providers
  • Appeal boards

My Rant

So it was with elation when I received the letter from my disability benefits provider that my status was changed to "permanently disabled". FINALLY, someone was hearing me, hearing my doctors and acknowledging my situation. I know there are many of you out there who know exactly what I'm talking about. I also know that there are people who have gone through much worse and treated more horribly than I could possibly understand. I know that all people involved, from doctors to benefits adjudicators, are just people trying to do jobs that have mandates and policies which must be adhered to. But I also feel that it is disgusting how people who are already vulnerable are treated like charlatans and leeches just out to bilk the system. The last I checked, even our judicial system is based on innocent until proven guilty. Or does this not apply to the disabled?

Phew, OK now that I have that off my chest we can continue...

Hold please

Once my elation subsided, I suddenly realized that I didn't know what to do. All my energy had gone in to fighting. All I had ever wanted to do was just be able to focus on healing and now I had that chance. I was given the opportunity to take the hold button off my life, but now what? I still barely had enough energy to get up and shower. So I had a decision to make.

What do I want my life to look like?

Now I know what I WANT my life to look like, but that picture was no longer possible. I have been mourning the loss of that picture for five years and it time to put my black dress back in the closet and allow some bright, fun colors back in to my life! 

Before that can happen, there are a few ugly cobwebs I need to clear out before I can move forward in a healthy manner.

Ask for help

I freely admit that I need help taking that ugly hold button off my life. Because my system reacts so violently to any kind of over-exertion, I have developed anxiety around any activity which could cause a pain/fatigue flare. Being able to admit that I am dealing with anxiety was a big step as I realized I had some stigma around it. I felt it diminished the real medical issues I was dealing with, but now I see just how big a role it is playing. This is where I give kudos to our health care system. There are many excellent programs available for people dealing with depression, anxiety or other mental health issues. If you feel you are struggling in this area, get help or at the very least get information. It could be your first step back in to wellness and back in to life - I have included links to both the Canadian and US agencies below.

Looking ahead for possibilities

I freely admit that I have been struggling with figuring out what I can do. I have not spent as much time as I should, partly because I find the exercise a bit depressing. Again, that is because of where I have been focusing - in the past. I believe we all have untapped potential. Now more than ever before we need to dig deep and find those hidden talents, interests, opportunities - anything and everything that we can still do and enjoy must be brought out in to the light! Not only that, but it needs to be written down, typed, heck, laminate it if you must but you... WE need to see what we CAN do and try not to look at what we can't!

I have discovered that I love to write. God has been impressing on my heart for months now to write a book.Why have I not started it? Fear - plain and simple. But what can I do right now? Blog! This is becoming my creative as well as healing outlet. If I can help people by sharing my struggles and lessons learned, then I gladly do so! As the title of my blog and website state -
Standing along side those in pain
I mean that. I want this blog to be journey we share together. I want to hear your stories - the good the bad and the ugly. We can all learn from each other. You deserve to be heard; to have your story acknowledged; to have your victories applauded!

Question of the day

What can you do today, right now, to help you move forward with your life? Name one positive thing that you can do that will bring you joy. Here are some ideas to help get you started. This list is not exhaustive and I welcome your ideas as well.

  • Become a shutterbug! Be the person that always has a camera in hand. Create online albums and share them with your friends.
  • Learn something new ( is a great site for this)
  • Scrapbooking - not only is it fun but you can create keepsakes that people will cherish for generations.
  • Baking (not recommended if you are an emotional eater like me)
  • Stargazing - Imagine starting a blog about the stars, constellations, meteors, events such as meteor showers, etc.
  • Get a degree - If this is something you have always wanted to do but never had the time, perhaps that time is now! You may even qualify for student grants because of your disability.

I look forward to your comments. I wish you a day filled with hope - even if it's just a little bit