Burning for a Cure

Friday, November 29, 2013

Fall down seven times, stand up eight
I doubt many of you know this, but November is worldwide CRPS/RSD awareness month.  It is such a rare disease that effects so few people (thank God) but it still affects people. Kids like me, adults, it can even affect animals. I always strive to make people aware of this terrible and confusing disease.  We may look completely normal... We might laugh and smile... But that does not mean that we are not constantly in excruciating pain.  We have learned to live with it.  Don't say we are faking.  Don't say that we are just having a bad day and it will be fine.  Do say how strong we are; how amazing it is that we cope with it.
I wish I would have done more this month but why does one month matter more than the others?  Why can't every month be filled with such passion from the families of those affected?  Why aren't there fundraisers every month and walks and 5ks? That just isn't how it works, I guess. It should though, right?  We should always try to help each other no matter what the situation.  So many people fundraise for cancer research and the goals they reach are phenomenal!  Why stick to one problem though?  CRPS is so rare and affects so few people that nobody knows enough about it to know what they should be fundraising for as well!  If each of you who read this tell one person about it... it could really make a difference.  Awareness is key for early detection and knowing how to treat people with this condition.  You could be the reason someone goes into remission from early detection simply by telling someone about it who can start a chain reaction.  I'm sitting here smiling just thinking how great that could be making sure nobody else has to be in my position I am in today.  (Basically today is the third day my left knee has been dislocated due to dysfunctional muscles spasming and pulling my knee cap out of place.)
Jaded Childhood
All in all, I just want to say how important it is to CRPS fighters and their families that something is done for this.  I cannot stress enough how much awareness means to us and how important research funding is!  Here you can donate to help RSDSA provide support, education, and hope to everyone affected by CRPS/RSD while we drive research to develop better treatment and a cure.
Burning for a Cure


6 comments

  1. I know exactly how you feel. Im 39 now and have had crps since an injury in 1999 they didn't know what was wrong why my foot continued to hurt. I felt like they thought I was trying to get out of going to work. I was a correctional officer at the time. But I have dealt with the pain since then and its not easy living a normal life but I just do what I can even though I may be miserable. I try to make my family life as fun as I can for their sake. But I pray for you, you are so young and I can't imagine children dealing with this horrible disease. Hopefully one day there will be enough information about crps and there will be a way to control it.And people don't feel like they are crazy who have it.

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  2. So well put my love. You nailed it! I had no idea that such a vicious disease existed and I never dreamed that in this day and age of our medical society that research would be so far behind. I also would have never beleieved that people (including Drs) could be so judgemental and unwilling to understand. It's terrible for someone to get this as an adult but totally heartbreaking for a child to be cursed with this for life. My daughter has also been robbed of her childhood since she was 9 years old. she is 11 now and still doesn't understand what is happening to her body or her life. I hope everyone passes this blog on to everyone they know and it just keeps going. Until people are aware and begin to understand we won't see any changes in funding for research. Good job getting the word out there. I'm proud of you.

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  3. I can honeslty say that I had never heard of this disease before you came along. Although I still do not fully understand the whole details of the problem you and others have, I will make sure to do my best at sharing your story to others. I will try to help as much as posible for others to become aware that this is real. Ha, and I thought I was getting it bad for people telling me to stand up strong and "man up" over my scoliosis.

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  4. Cheryl Hansford RossDecember 3, 2013 at 8:15 PM

    Your photography moves me. I see your pain thru your pictures. You have a special gift. I had the pleasure of viewing some of your work on Thanksgiving. I enjoyed pictures of your friends and the backgrounds. I am sorry you are in pain and amazed that you are able to rise above it. Stay true to yourself and best of luck with your photography. Praying for a cure.

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