My name is Crystal. I was diagnosed with RSD/CRPS 9 years ago. Only I have suffered since I was, well, born. Im 27 now. I walk like a 99 year old amputee, I move like molasses out of a freezer, I think like Im too old and wise for my age, and I love my life. I've peed myself because of laughing, inability to walk, and of course pain. I have no friends.. Or should I say, no friends have me? !?!?!?! I have a low tolerance for inept, lazy or just plain ignorant people. I refuse to live off narcotics. I found the man of my dreams and married him. I have 2 dogs that weigh more than most teens do.
I demanded my doc PROVE to me he was right when he said it was RSD. I've had 27 surgeries. Im a rare case of RSD, it has crossed paths of my body and infected both sides and now is working on my upper torso. I laugh in RSD's face. Unlike most women, who terrorize themselves over weight, beauty, popularity, I terrorize myself over actually cleaning the whole house in one day, cooking a meal for my husband, and going to the 12 docs in one month. I dont brush my hair daily, it hurts, I dont want to burn that little amount of energy on THAT one task, and my husband likes the "got stuck in a tunnel during gail force winds" look.
On a serious note, I know the pains and agonies of this disease, I've had it my whole life. 29 docs it took to find the right name/reason for my problems. I've had every diagnosis under the sun, including one dr telling my parents "she's just an overweight, unsociable, depressed kid." Partly true, I was overweight and depressed. BUUUUTT the inability to get up and go like the other 9 year olds does a number on one's head.
I suffer from many other health problems, R.A. O.A. Gout, arachnoiditis, salandiatis, sjogrens, lupus, insomnia, chronic sinuitis,fibromyalgia, osteoperosis, and of course depression.
AS you can tell I have the immune system of a turd.... But in the mist of all this I have a wonderful husband that cherishs me, loves me, spoils me, and puts up with me. He will cancel guys night out to stay home and play cards with me, he will run to the store for tampons even if EVERY person he knows is in the store at that exact moment. he proposed to me while I was on crutches (had been on them 14months by then) with a cast up to my booty cheek. He said it was the best time to ask, since I couldn't run. ( had him fooled, I've never been capable of running)
He is willing to have a vesctomy so I dont have to indure any other surgeries that arent "life altering for the better." He loves our fur babies like most would love their skin kids. he rushes to my side when I fall while walking on flat surfaces, and laughs when he knows he shouldnt.
I learned to deal with my pain and heartaches from my mother, who suffers from dibiltating disorders. She doesnt understand the RSD but sure tries. Nobody around me understands it. They dont go through it. I have had friends, and lost them. They are scared of me, maybe they think im contagious or maybe its too hard to deal with. Either way I understand. I've never asked why me. I am actually thankful that I, instead of my sis got dealt this hand. She wouldn't have survived 18 years, let alone 27.
I need support for the days I feel it the most, have tried shrinks, they just want to dope me up, or tell me that I am doing fine on my own, why spend the money to see them...
I went to an actual support group once for pain sufferers, but when your the only under 50yr old in the group, its disheartening. These elderly people worked and tortured their bodies for decades to end up in pain. I was merely born.
I only need 1.5 semesters to have my assoc in criminal justice. But I had to drop out because I am unable to get around the campus. I havent had the urge to go back, no time with the doc's and trying to live my life to the fullest.
I have not worn socks or real shoes in over 12 years. I would rather slam my head in a vault door than feel my feet wrapped in any fabric/constricting materials. I snap at people when Im in so much pain but refuse to give in to it.
My dogs are trained to the words "watch feet" and actually know what that means. One has not had his tail docked and is learning to "hold tail" so it doesn't wack my legs.
I've learned how to live in Illinois with freezing temps and unable to wear pants or any clothing that touches my lower legs or lower arms. Im almost always barefoot. During the winter my hubby has been trained to look for signs of frost bite, since I cant wear socks and dont have "true" feeling in my toes, he helps me watch to make sure I haven't deep froze any digits off.
I fall, alot. I cry at stupid things, Im obsessed with other people's feet. I watch them constantly. I hate feet.
I wonder what its like to have true feeling in my lower limbs, what is like to walk without pain shooting through me so fiercly that I want to rip someones head off, so that they may understand what I feel.
I answer "does that hurt" with " if I jabbed you in the eye with a hot stick, would that hurt?" I've learned that its better to misplace your wedding ring than have it cut off from being too stubborn to remove it when your hands swell. I've made little kids cry when they looked at my "multi-colored" legs with the scars and battle wounds. I've possibly prevented some tweens from doing drugs, when they asked "why your legs look like that" I've responded with "well when I was about your age I decided to try smoking pot, and the next day I woke up and my legs were like this."
The world as taught me to be hard and mean, and still be able to stop and help an elderly lady with her bags. I dont mind the people staring any more. I still get offended by lazy people, they have no clue what they are missing. One thing I can say is I cant wish for my life to be any other way, that could be the bad way. Without pain I could have turned out skinny and a slut, or an addict, or even *shutter* lazy. My life is mine, painful, but so full of love and trials that only I can live it. I do wish to find some common "grounded" friends or associates. There are things I dont handle well, and I think with the help of like minded (or should I say like-pained) people I could better handle some things.