HOW AND WHEN DID YOU GET RSD?
Six years ago, I got RSD. I went outside to cut my roses. The sun was going down and my mother was helping me cut 27 rose bushes and, when I turned the curve to cut the last rose bush, my left ankle rolled on the outside of the curve and it rolled and it snapped in half. As soon as I heard it break, all at the same time, I collapsed with a lot of pain. My mother helped me into the house and we called my husband from work and told him to take me to the hospital.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I no longer could get up and move around anymore. My leg was turning purple, blue and red, and it was burning like there was a dagger stuck in it. I was even using a walker for five years. My husband had to do everything for me. My children were helping me out, as well, and my youngest son was very, young when I got injured. I no longer could get around like I used to. When I make plans, I can’t always keep them like I used to. As time went by, I noticed things were changing. I could no longer drink my coffee at a standard. 176°. I had to have it at 135°. I could no longer eat ice cream and I could no longer have cold IVs in my arm or any ice on me at all because it felt like fire. I always have to elevate my feet on a stack of pillows and, when sleeping, I have to have body pillows all around me to prop my arms and legs up. Anything that touches me feels very cold, yet, it feels like I’m on fire.
I’ve been in remission for two years, which was such a blessing. However, the remission recently ended and life has become harder again.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, my husband, my kids and my friends help me. I have even had a house keeper.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I am a true Christian. I believe that Jesus has a part in all of this and I do believe that Jesus is getting me through all of this every single day.
HOW HAVE YOU REINVENTED YOURSELF.?
If I did not have Jane, I would struggle more with this disease. She has taught me a lot about it and how to get through it. Below are some ways I am changing:
1. When I make plans with my husband and kids, things can change in the blink of an eye and we will have to go home.
2. I was on narcotics for pain for five years and I have been free of them for two years now.
3. I am now looking for ways to help me homeopathically, rather than using prescription drugs..
4. I try to be patient, but it’s hard having people help me and it’s hard having patience when people do things differently than I do.
5. Now that I get judged by the way I look, I no longer judge other people according to the way they look.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
I would say yes, something good has come out of this. I trust in Jesus more. I have more patience with my children and my husband, and they have more patience with me.
WHAT THINGS DO YOU MISS THE MOST?
There is a lot that I miss. I miss being able to make plans and stick with them. I miss being able to eat ice cream anytime I want. I miss being able to get up and move around and clean my house and take care of my kids like I used to. I miss doing things on my own.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I want the general public to know “do not judge the book by it's cover”. I am in pain a lot of the time and most of the time I don’t show that I'm in pain. I want the hospitals to be very well equipped by knowing about RSD. I need the nurses to know about RSD, as I have run into more nurses that do not know what RSD is.
WHAT HAVE I LEARNED ABOUT THIS DISEASE?
I have learned that RSD truly can bring you down and you have to fight like hell to come back up.
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