HOW AND WHEN DID YOU GET RSD?
In 1999, I noticed a huge lump on my right foot that was the size of a golf ball and it burned like someone was setting me on fire, so I went to a podiatrist and he said it was a neuroma and scheduled surgery. After the surgery things went down hill. My foot began to swell like a football, and the pain was so bad that there were times I wanted to die. The foot just never healed right so, after six weeks, the doctor said “We need to do reconstruction surgery.” So I'm thinking “Ok, he's the doctor; he knows what he is doing,” So, again, I went in for surgery while they cut and broke just about every bone in my foot, and cut the Achilles tendon and stretched it. When I woke up from surgery this time, I can't even describe the pain I felt. I went through 20 casts (because of the swelling) before the doctor realized that a cast couldn't be put on me. So he finally did a half cast, and I was bedridden for a year. When I was sent home from the hospital five days after surgery, the pain was so severe we kept telling the doctor (for months afterwards) and he told my husband I was too sensitive. So we got fed up with my treatment from the doctor because I was getting worse. My husband started looking for another job, and we moved to California. Finally, in 2000, I got my diagnoses from a podiatrist.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
It has affected my ability to concentrate on things and stay focused, because of the pain. It affects my grand parenting because I can't pick up my grand kids when I'm in pain, and it is so frustrating when you can't explain to them why because they are too small to understand. It has affected my duties as a wife because I can't stand for long periods at a time to cook, so now my husband does most of the cooking. RSD has also caused me to isolate myself from people, because they don't understand what it's like to feel this kind of pain everyday but look ok on the outside. I went from being very independent to having to ask for help, and that has been the hardest thing for me.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
My husband and my mom have been my support system, and a few wonderful people I have met on facebook.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, if it wasn't for my faith, I wouldn't have gotten through this for the last 14 years. I won't lie. I have struggled many times, asking God why is this happening to me, but then he shows me there is someone else out there worse off than me. I believe God gives us challenges for a reason, and the one thing I can say is I am a fighter and I will not give up this fight.
HOW HAVE YOU RE-INVENTED YOURSELF?
I love to do scrap booking to take my mind off the pain. Looking through old photos of my grand children and family takes my mind off things. I also love making graphics for other people, like sig tags and cards.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes, I have learned patience and compassion for others with disabilities. But, most of all, I am learning to trust more in God.
WHAT THINGS DO YOU MISS THE MOST?
I miss being able to run, I miss a tight hug from my grandkids and, most of all, I miss being able to make plans in advance. Oh, and I really miss my hot showers. I also miss that I use to be a social butterfly and now I rarely talk to anyone, anymore.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND YOUR DISEASE?
I want people to know that, although I look ok on the outside, I feel horrible on the inside. People need to know we have good days and bad days. They also need to know this is not in our heads, and just because we can do something one day doesn't mean we can do it the next. RSD affects our nervous system so badly it wacks everything out, and it affects everyone differently. The public also needs to know this disease is real and it can happen to anyone.
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