Monday, April 06, 2009

A last word re the CRPS (for now!)

I didn't write the CRPS post below to elicit sympathy, my friends. I wrote it for a number of reasons.
  1. To tell you a little about CRPS.
  2. To let you know a little more about the programme at Bath.
  3. To inform any would be investigators out there that just because people look normal, it does not follow that they are fit and healthy.
  4. Because I was appalled that every single comment in that article seemed to think that the man was a fraud and lying about his condition, and because none of them had a clue what CRPS actually was. They even called on the judge who awarded him compensation to resign.
  5. I am sick to death of having to explain CRPS to people I meet in the street. The eyes tend to glaze over, and I can see the thought...."she has lost her marbles" flash through the brain. I usually settle for "I am fine, thanks" or "I have a wonky knee." This is also one of the reasons people with it start to withdraw from social events. Like me.
  6. The implication out there is that we are malingerers.
  7. I spent the last few days in Bath just hoping and praying the consultants would walk in and say that they had made a mistake and that I didn't have it after all. I would be more than thrilled if they had decided that they had made a mistake. They didn't.
  8. Every person who reads what I wrote is one more person who will understand better, and perhaps be able to spread the knowledge about a little. Knowledge is a powerful thing.
  9. CRPS or RSD needs to be out there in the public more. That way there will be more money for research and hopefully a cure one day. At the moment, there is no cure.
  10. When I get miffed, the fingers fly. I just emailed the paper. Let us see if they manage to respond.

There. That feels better, she says, dusting off the hands. I do believe I just entered warrior mode again.

13 comments:

Mary said...

Settle Gretel!

Laurie in Ca. said...

Linds,

I was really enlightened by reading your posst on CRPS. It answered a lot of questions in my mind about how serious it is for you and so many others who suffer from it. I admire your courage and strength to move forward in it and not to let it beat you down. I am praying for you to feel Gods hands on you through this and praying for relief. I love you girl. You are a beautiful warrior with the sweetest heart. My kind of girl:)!

Love and Hugs, Laurie

Crystal said...

Laurie said it better than I ever could have. I too want to understand - you are right about sharing - thank you! I love when your fingers fly - the emotion you are feeling comes right through to me :)) Do let us know what the newspaper does with your email!

Vee said...

Good for you! Yes, keep us informed. It's so easy for the ignorant to be judgmental.

Diane@Diane's Place said...

You go, girl! Give 'em heck! :o)

Dawn said...

Keep it coming! The more we know, the more we know.

Midlife Mom said...

Have been thinking about you and wondering how you are doing. Read your post describing CRPS and am just amazed at how complicated it is and how many things it involves. Thank you for enlightening us on it. Pay no attention to those that sit in judgement and don't know a thing about what they are talking about. Easier said then done I know. Your courage and determination inspires me, I would only hope that I could handle things as well as you have my friend!!!! xoxoxo

Sandra said...

You go Linds....and thank you for the article on CRPS, I honestly didn't have a clue about it, but now, though I still can't exactly say I understand what you have, at least I have a little more insight into what it is.

Needled Mom said...

I am so glad that you have written and explained this dreaded disease for all of us. You have done a beautiful job of describing it and I do hope that you will get a response from the paper - perhaps in the publishing of an article regarding CRPS.

Edith said...

Linds...thank you so much for taking the time to write all that out. I really had no good concept of what CRPS is - now I understand a little better. I hope that you do get a response from the paper.

One question - is CRPS similar to fibromyalgia?

Have a blessed day.

lakeviewer said...

Lind, I went back to your previous post and got the full explanation that I needed to read this post. You've got my sympathy and respect, because pain erases everything around you that can give you joy. I just had a bout of bursitis in my shoulder/arm rotator and the world stopped for three weeks. Meds take over; and everything you do, from sleeping to eating, all connect to that pain that takes over.

You have a long-running condition that will take a lot of attention. No. You do not need to tell us what you have; you need to tell us how you find the courage to deal with day to day stuff. And sometimes, you do have to leave your warrior mode. WE understand.

At A Hen's Pace said...

Linds,

I really appreciated all the information on a condition most of the world is unfamiliar with. But this kind of info helps make it that much more known! It's a great service that you've taken the time to explain more about it, and it helps us, your readers, to pray for you more knowledgeably.

Keep up the regiment and the positive attitude!

Jeanne

megstev said...

Thought of you this evening while watching a very good science programme on the ABC - they discussed CRPS. If you want to, you can view the segment, and read the transcript at http://www.abc.net.au/catalyst/stories/2621515.htm
Hope things are going well for you.
Megan