Our Stories
~Jim's Testimony~
In 1992, I began to get extremely stressed from my job and marriage. I was a Regional Manager for a high tech electronic company with lots of people to manage and offices to run for profit. I began to be anxious about everything especially death. The anxiety grew larger and larger until it began to consume my life. I felt like each day I was going to die. When the sun went down the anxiety intensified. I was divorced in 1993 and this was the final blow in my life. I was out of control drinking and not looking to God for help. In 1995, I met this wonderful woman Sharon and we were married shortly after. Sharon recognized my ailment and was a tremendous help. We got back in Church and the anxiety was in check but not gone. The fear of death was still there.
In 2000, I had a pulmonary embolism and was near death. While in the emergency room a peace so overwhelming came upon me after I prayed to the Lord (3) times, "Thou You Slay Me, I Will Serve You". After God's peace fell upon me, I was given a vision by the Lord.
My vision was, I looked to my right side and there was Jesus. We were in a valley looking up a mountain that had caves carved into the mountain side. In the caves were people that had different color screens like thin plastic cover there face. I asked Jesus tell me what this means. Jesus softly spoke, you see the blue one, they have a fear of not being loved. The green one is a fear of not being successful. The yellow one is a fear of people. The red one is you, the fear of death. I said they are the in prison. He said yes, but where are the bars, where are the guards. Jesus said they can come out any time. I asked him why don't they come out? His reply was because the don't have FAITH.
At that point, I asked Jesus for faith and I flew out of my prison, never to be back in there again. I was emotionally healed. Praise to the Lamb.
Sometime anxiety tries to creep back in but I rebuke it in the name of Jesus. Anxiety is a deception of the devil and is not real. You cannot touch, see or smell it, so it isn't real.
I have faced other trails in my life but my faith is unshakeable thanks to the Father, Son and Holy Spirit.
Your friend in Christ,
Jim Tatum
Note from Mary: Jim is a dear friend of mine and I am so honored that he decided to share his story with all of you. Jim spent the first part of his life as a professional athelete and adventurous outdoorsman. Jim now suffers from a rare form of leukemia and has arthritis in his legs. Recently, Jim began a fundraising charity for people without medical insurance to afford important surgeries. He is scheduled for another surgery on his legs, but is enthusiastic about God's plan for his life and for his new charity. If you would like more information about Jim's program, please contact me. bodyofhope@aol.com
 From Bethany
My name is Bethany and I’m fifteen years old. I go to a performing arts school where I major in music (specifically voice). I love to sing and play my guitar and piano (I’m not very good, though.). The RSD messes with my hands so it can be rough playing instruments but I play even though it hurts a lot. Music is such and overwhelmingly awesome form of art and it’s very worth it.
My experience with RSD is a lot different than other RSD’ers. Osteoporosis and polyneuropathy (nerve damage in many nerves) are also in the picture and no one knows if that is a part of the RSD or if it is part of another disease. I’ve had symptoms since I was little. Even as a little kid I dealt with mild muscle weakness, pain, swollen hands and feet and other health problems. The big trouble didn’t start until I was nine (’01) had a minor knee injury that required surgery. The surgery went along smoothly but the recovery was rough. I was on crutches for months before surgery (due to a scheduling issue with the surgeon) and after surgery I spent 3 weeks in physical therapy before I was walking. In February, ('02) I was at an indoor pool party and I jumped feet first into a kiddy pool. Okay so that was really not a smart thing to do and I got a stress fracture in my foot to prove it. Even after the bone healed, I still could not walk on it because of unbearable pain. It didn’t feel like a broken bone. I felt like my leg was being crushed, pounded and on fire. The pain felt like the equivalent of walking on fire and glass. My right would turn dark blue mottled with bright red. The skin was stretched and shiny. My whole leg was swollen and multi-colored. It came to the point where I couldn't even walk with my walking cast thing; I had to use crutches. It was even hard to wear a sock on it. The pain was unbearable. The pain spread from my right leg to my left leg (and eventually to both arms). It pretty much spread throughout my entire body. Around the same time frame I was diagnosed with osteopenia (which later turned into osteoporosis).
About the same time-frame, I started getting muscle weakness in hips, ankles and fingers, making it very hard to walk with crutches. I eventually regressed to a walker and than I got to the point where was so weak, I could just barely move my legs. I could not sit up in a normal wheelchair or I would fall forward (in addition to the extra pain sitting up caused on my back). I was so scared, and I didn't really know what to think other than that it all sucked. I was diagnosed with RSD (Reflex Sympathetic Dystrophy). No doctor took the diagnosis seriously and told me that it was all in my head and that I need to see a psychologist (How can a psychologist keep my feet from being swollen and turning colors?). My mom took me to a number of psychologists and each one of them would say that I need to see a neurologist and that I was simply misdiagnosed. I did numerous psychological evaluations and it all came back that I was a psychologically healthy yet distressed over having a disability (duh.). However no doctor that I saw would listen to the psychologists (is this making any sense to you?). I was in the hospital for weeks being treated like a head case. It was hell......for more of [Bethany's story, website, and to see how she is reaching out to others in pain, go to http://fightingagainstrsd.tripod.com/id15.html]
 Erika's Journey of Hope
In March of 2002 I fell in my home and had a minor sprain to my left wrist. Before this night I was an active 12 year old girl who was enjoying life. My wrist became extremly swollen, discolored, cold by the next night, and I was in extreme pain. For seven weeks I went to at least 5 doctors who all told me I had the same problem. I just had a bad sprain and it would heal soon. I finally went to a Pain Management Doctor and he diagnosed me with RSD. I was put on several medications. Three years later I fell in my home again but sprained my right ankle. My ankle swelled right away and started getting cold and discolored. I once again went 7 to 9 weeks without getting diagnosed. I went back to my pain management doctor and got diagnosed with RSD. I have been limited in my activites since getting diagnosed. I am on my high school swim team but I am not aloud to participate in other sports.
I am now 17 and even though I am limited in my activites I am comfortable knowing that I have a rare disorder and I have to explain to my friends the pain I go through everyday. I believe I was given this disorder for a reason. I was not randomly chosen. I was given a purpose for my life and this is part of my story.
 Karen's Miracle
To some this may sound too simple. It was my dentist who helped me. She numbed my nostrils with lidocaine and went through my nose with two long Q-tips until she reached the bundle of nerves below the brain and drizzled more lidocaine until the nerve ganglia were numb. My nerves were given a chance to stop sending the pain messages and reflex messages and when they began to come back they began to reset themselves according to how they were before injury. She and my cranial/sacral chiropractor who works on my spinal fluid washing my nerves anew have done wonders for me and I'm back to work. Anyone who wants more information contact me at perloria62@aol.com.
My prayers are with you all as you visualize your body letting go of pain, waking up to a refreshing day and healing! Miracles do happen..never stop believing! -From Karen K. (RSD/CRPS survivor)
 Carolyn Blackchief
Thank you so much for asking to be able to part of your "bodyof hope" Its truly a blessing to find "angels" like yourself that take the time and actually to listen what is going on with my life. I actually was able to get this used computer by saving up for a long time.. NO SSI/SSD no income since I got hurt in 03/2002. I haven't had any support and felt like I was going crazy. I am 30 miles south of Buffalo, Ny on the Cattaraugus Indian Reservation. Im the first to be diagnosed in my area with RSD. and on record here I am first native american. I am Seneca - eventhough we own 2 casino's and one on the way they said its going to be sometime before they can help me with my special physical therapy. I have lost total feeling on my right inner thigh to my toes, now its spreading to my left side in my arms and 2 weeks ago it was in my face and they thought I was having a stroke. I am going to be 30 next thursday and life shouldn' have to be this hard or have to be going on with all these struggles. I know that everything happens for a reason and maybe this is what God has been preparing me for. I used to help with Special Olympics and United Way when I was working for GE and on my "freetime" I was a clown. I used to go into hospitals and day cares, the not so funny part is that now I can barley make it to one room to the other. Thank you for caring.. take care and God bless.. 
 **Sherri's Journey**
I was 14 years old and had gone roller skating with my sister and some friends....I was
skating and slipped and all I did was turn my ankle over a little, no broken bones, fractures etc but after that my journey with rsd began. When I was diagnosed, it wasnt recognized by most of the medical community and alot of doctors said that it was in my head. Now times arent much different cause they still have trouble seeing it as a disease even though its proven to be. Anyway, I remember feeling like my world was falling apart. I was constantly hurting and most of the stuff that i enjoyed, I had trouble doing like running and athletic stuff. It seemed like I walked around in a daze cause of all the medicine I was taking and I found myself sleeping all the time or just not "with it" at all. Then, if that wasnt enough, I started some forms of treatment for the disease which consisted of physical theropy and 47 nerve blocks where injections were done in my back to numb the leg long enough for the physical theropist to work with my foot. To take my mind off these things, I played music. Piano became and still is the biggest talent I have. It helped to "take me away" from all the pain and things that were going on in my life...My "Babies" (5 Ferrets) help alot as well to take my mind off the pain....They can make me smile when nothing else can :-) By the time I reached 18 years old I was still in drastic pain, my foot and leg spazemed on a regular basis, and things seemed to be terrible. Up to this point the only place that had the RSD was my left foot. Then pain started shooting up my leg and into my back. It wasnt long before a bone scan confirmed that I had RSD in the left foot and leg, my lower back and my right leg and foot. I experienced not just the pain, but my foot shaking in severe spazems and turning purple and blue to an almost black color and the ankle continuously tried to break by pulling inward.... My muscles ached 24/7 and all the doctors could do was say take more medicine. I think thats when I started turning all the pain into the force of will power. I got to the point where I knew the pain wouldnt go away but there was a way to concentrate on other things like my music and the rest of my life in general. It has been thirteen years now since my diagnosis. I now have RSD in left leg, left foot, right leg, right foot, left and right arms, my entire back, and my stomach (and now they will be checking into my neck and left side).. Not much has changed with treatment options but I have faith in the medical community and especially God that there will be a cure for this dreadfully painful condition and no one else will have to suffer as I have with it.
***May The Angels Of Heaven Be Your Guide, -Sherrie Milot***
Marilyn's Story 
Hello, I was diagnosed with RSD in August of 2002 (age 38), after an injury to both front shins on 07/17/2002 (liability claim) and have done all the treatments (have included below) and work my full time job, have been out on FMLA two different times and third floating FMLA leave for the contuining of all doctor appts., etc.; and struggle with no leave balances, monies for treatments and doctor visits, juggling the every day, etc. . . Only on my own, I’m single and my daughter (only child) moved to Florida in January of this year, so yes, I rely on my Circle of Friends/Angels everyday to get me through. . .
Nerve Blocks, Physical Therapy (3 sessions), Biofeedback, Acupuncture, TENS, Chiropractic , Care, Various Herbs – Moducare has helped me tremendously with the swelling issue, Medications (mainly Epileptic Seisure and Pain types), Still searching for help with the “Burning Pain”
**See my passionate response to a controversial Headline about a coma as a treatment! "Headlines Page"
 ~Mary's Hope~
In October, 2004, I sprained my ankle very badly after falling down stairs while doing laundry. Before my injury, I was a very active 22 year old college student and full time office manager. Other than work and school, I enjoyed outdoor activities with my wonderful husband, being active in my church, running with my dog daily, and shopping for fabulous shoes:).
After following all of my orthopedic and physical therapist's suggestions, my recovery seemed to be on a continuous downslide of pain, swelling, discoloration, and frustration. The doctors seemed perplexed and in disbelief (Unfortunately, RSD is a very foreign illness in the medical world, not to mention the general public). Finally, after my orthepedic suspected RSD, I was sent to a pain management specialist who was confident that a sympathetic block would do the trick and I could toss the crutches, and go back to normal. Even after 4 painful spinal injections (in 1 month), my ankle and foot continued to swell and turn strange fluorescent colors, and I was in constant, unspeakable agony.
Between the daily doctor's appointments, sickening medications, insomnia, hallucinations, electric, sawing, jolting, "blue", radiating aura of nauseating, horrifying pain...I was fighting strong suicidal urges and fantasies every second of each never-ending minute of the day. My super-hero husband, supportive parents, and 4 admiring younger siblings held on to me with all of their might. I took 2 semesters off of school and missed countless days of work. I spent weeks locked in my dark house crying, screaming, and throwing things; Nights, I prayed for a miracle or for death.
That July, I turned 23 and began to feel light shedding over my chronic journey. Rigorous physical therapy and hydro therapy have gotten me walking in spite of my pain and I have regained motion in my leg. Biofeedback and counseling have taught me visualization exercises, foot warming, relaxation & breathing techniques, as well as acceptance of my condition and countless coping tools. I use a TENS unit, a compression sock, numbing massage ointment, wear flat boots, take several supplements daily, along with pain meds when needed. My neurologist put me on Effexor(for nerve retraining), Lamictal(for nerve response), and Ambien(sleep), which began to finally improve my quality of life. My wonderful pain management physician, Dr. Ellner (Atlanta) has been a remarkably optimistic source of ongoing support throughout my battle with RSD.
Next month is 3 years since my life-changing injury. Although I had completely different plans for my future, I can begin a new kind of life to include my cranky, thieving handicap which has stolen far too much already. I have rewarded myself with deserved gifts like compassion and a new vigor for life.
I am working full time, beginning classes again, learning sign language, taking violin lessons, attending Bible study, and have created a new web site for those living with chronic pain to share unique and inspirational coping strategies like artwork, poetry, and visualization techniques (www.BodyofHope.com). Although I have always planned for a career in helping the disabled, I now fully appreciate the courage and humility that living with weakness requires.
I still have frequent bad days of #10 pain where I hurt so much I can hardly blink, however, I finally have the tools to build a bridge to get me through to tomorrow. Even if I do not see fabulous heels on my feet again or backpack through Europe, I am trying to allow God to use my most trying struggle as a growing experience. Hang in there.....Mary Mattio
Atlanta, GA
Just an update, September 8, 2007
Biofeedback and Physical Therapy finally got me back on my feet (Literally). I am finally able to handle and tolerate my pain. I can choose to never use my leg, drop out of life, and continue to have terrible pain, or I can use my leg, participate in life...and have terrible pain. I am devoted to the later. The pain and other symptoms still keep me from doing what I want and what others want of me. For a long time, I felt that I was entitled to health. Looking around at other 25 year olds, I felt like I deserved to have a strong, healthy body. When I finally realized that health is a gift and a luxury- I now understand that not everyone has the same abilities just as I should not expect to have the same health as those I envy.
Currently, I am dealing with the opposite of insomnia and have been sleeping almost 20 hours a day- every day. When I am awake, the pain is nearly intolerable and I am now taking methadone as my main pain medicine. It lasts longer than other meds and it targets the pain effectively without messing with my head. I am working part time and have taken this semester off school while I try to resolve this sleep issue. I am now only able to work part time and have taken this semester off of school while I try to resolve this sleep issue.
This site continues to strengthen my spirit and gives me a reason to march ahead although I still battle with frustration. My friends and others my age are not familiar with "illness" and how devistating the effects can be. The youthful abilities that they take for granted are luxuries that I no longer can enjoy. The emails I recieve from you help me remember that I am not alone.
I hate this disease, and I am devoted to keep hoping, fighting, and searching for relief. There are small children who deal with RSD- so how can I give up? You can't give up either! Your perseverence will surely change others' lives. I am cheering you on and I would love to hear from you.
Those suffering without strong support need hope and prayer for the unspeakable wounds they are forced to bear and for a soft place to fall in this life. Stay strong..........Mary
Let me know what you find inspiring, or tell your story: bodyofhope@aol.com (new working email)
*To read the story of a brave little girl's battle with pain, go to: www.rsdawareness.com/michelleandanna.htm
We want to post your story or words of encouragement! bodyofhope@aol.com
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