The day started out like many before it. Sunny and cool. The dew still lay on the grass. I put my son on the bus then went for a walk as was my custom. I never dreamed at the time that this day marked the beginning of a trip down a path of suffering so unimaginable. Sometime during the walk I rubbed two blisters on my left foot. They didn't heal properly and I had to take antibiotics to get rid of them. As the blisters were healing my foot and ankle began to swell. My doctor, unsure of the problem sent me to a group of orthopedic doctors. We started with treatments like rest and immobilization. My foot continued to swell so much that I had to have my cast cut off. At that time one of the doctors mentioned Reflex Sympathetic Dystrophy Syndrome and I was scheduled for a "sympathetic block" one of the diagnostic tests for RSD.

By that time my toes were turning dark and they felt cool to the touch. Since RSD is a disease that affects the sympathetic nervous system a "block" will bring up the temperature, change the color, and relieve the swelling in the affected limb. Some people only require one of these "blocks" to repattern the nervous system. There was no visible change when the test was performed on me. I was retested but nothing changed. After an abnormal bone scan and MRI I was hospitalized for observation and treatment. Many tests were done to rule out a variety of ills and then my foot was irrigated and drained and a bone biopsy was performed to try to determine if I had a bone infection. The culture did not show what type of infection I had but I was treated with intravenous antibiotics and sent home continuing drug therapy on an outpatient basis. Ten days later I was readmitted to the hospital as my symptoms worsened and there was some drainage from my incision. Another debriding (I&D) was done and the cultures again came up negative for infection. Still it seemed to be the only plausible explanation so another antibiotic was introduced and a few weeks later I was released continuing I.V. antibiotics twice a day at home. After about ten weeks I became very ill from the drugs and was hospitalized to get my system back in order. The medicine was discontinued and the remaining hurdle was getting up and getting my strength back.

Finally, after five months, I was allowed to bear weight on my foot. For a few days things went along fine. Then I began to have some nagging sensations reminiscent of days gone by. It soon became obvious that I had a bigger problem. My doctor, once again suspected RSD and referred me to a specialist. I had done some preliminary research on RSD and knew it was something I did not want to have. I had several of the hallmarks of the disease. Swelling, discoloration, and temperature change. But I lacked the "major hallmark" and that is unbearable burning, cutting, throbbing pain. Pain so severe that the affected area cannot be touched. Just a brush of the bed sheet brings excruciating pain. I had pain...but thank God not that pain.

I will never forget what the specialist said the first time we met. He was busy looking at notes while his nurse took a picture of my foot. She sat the picture in front of him and he said "that's the ugliest thing I have ever seen in my life." It had been eight months since that summer day. He did a "sympathetic block" as it is really the test to diagnose RSD. It took three times the amount of medicine and three times the amount of time but there was a change of temperature and finally the diagnosis was confirmed. I was hospitalized with an indwelling epidural catheter and had physical therapy three times a day. Several hours from home, my family came over to take me out on a day-pass on weekends. I made several trips to the operating room during that stay. Finally after 27 days I was able to be discharged and return home. I left with an indwelling epidural catheter and temporarily implanted dorsal column stimulators, but I left walking. We were finally coming to the end of this nightmare.

I continued therapy and had home nurses to help me. After a few weeks I began to have pain in my back at the site of one of the stimulator leads and it worsened to the point that the wires and tubes had to be pulled because of the risk of infection. Once again I.V. antibiotics were a part of my routine. We held our breathe, prayed silently to God and first one week, then two, then three went by and I was doing well. Walking two miles a day I was enjoying my freedom from wheelchairs, crutches, walkers, tubes and wires.

About a month went by and remission continued. We rejoiced feeling tired but very blessed. Then one hot morning I got up early to take my walk. When I was done something didn't feel right in my foot but I dismissed it. As each day went by it got worse and my condition declined very rapidly. The swelling moved all the way up to my hip and I had to sleep propped up against a wall or table because of lack of mobility. I did not want to go through anymore treatment. I just wanted it to go away. I lived in denial until I could not get in and out of the car and then I went back to the hospital again. This time we saw RSD at it's worst. I made almost weekly trips to the operating room and finally two dorsal column stimulators were implanted. Also, a sympathectomy was performed. After 43 days I was well enough to go home.

There was one lingering problem. I had severe muscle spasms and as a result could not get my foot flat on the floor. We tried bracing, casting, and therapy but I had a severe contracture. I had to wear a high heel on my right foot just so the left foot would not drag on the floor. Doctors in the area felt I needed extensive surgery. With the risk of a return of RSD being great I was referred back to the specialist. He found a foot and ankle specialist who was willing to do a consultation. Another unforgettable moment. I will never forget the look on his face when I pulled off my sock. He was stunned. I quickly put my sock back on sure that he could not help me. He said "let me see that again" and he began making a long list of what would need to be done to resolve the problem. There were no guaranties but he was willing to try to help. The surgery was more extensive then any of us could have imagined. I believe 23 tendons were lengthened. Each toe was done individually. The Achilles tendon was lengthened by three inches but my foot was still not on the ground. So over time they manipulated my foot under anesthesia to bring it to neutral. I was casted for quite some time and could hardly believe it myself when I saw my foot in a normal position. Unfortunately I had a relapse and my foot contracted again so I was serial casted nine times, once again under general anesthesia, to bring the foot up.

Finally in remission it was time to learn to walk again on both feet. So off I went for another three weeks of extensive in-patienttherapy. It was hard work and very frustrating at times but finally we got everything moving and I again returned home to continue out-patient therapy. I have enjoyed a period of remission and have worked hard to regain normal function in my foot knee and hip. No one except God knows what the future holds. But I know Who holds the future and that is of great comfort to me.

This story would not be complete without testifying to the faithfulness of my God throughout this time. I spent 156 days hospitalized and made 24 trips to the operating room. I did not always have the luxury of having family nearby but God made His Presence so real to me. He blanketed me with His peace during the procedures as I was awake for most of them. He was my Strength, my Comforter, my Counselor. He was that Friend that sticks closer than a brother. The Bible says "the righteous fall down but God picks them up." He has done that more then once for me. He promised to never leave me or forsake me and He has been true to His Word. Echoing the words of David in Psalm 94:19 "In the multitude of my anxieties within me Your comfort delights my soul." I declare to you today that He is a Good God. He really does make all things work for the good. Understanding what that "good" is, is vital to grasping that promise. The "good" is that through every trial we are conformed into the image of Jesus Christ which should be the goal of every believer. That's why Paul The Apostle in James 1:2-4 said "Count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. Not perfect as in "without flaws" but perfect as in mature. Counting it all joy is not an emotional response. It is a spiritual response coming from the belief that the trials have a purpose in our lives. They are not meant to break us...they are meant to shape us!

I have purposely left out medical jargon and tried to make my story as simple as possible. The links I have listed below can give you all the medical information you could ever need. If you are reading this story and have never heard of this terrible disease you are not alone. Those of us who have suffered from it our trying to get the word out so doctors can make a correct diagnosis in the early stages. It is estimated that some 6 million people are battling this monster and that is just in the USA. When you think of us say a prayer. I believe God will do mighty things if His people will PRAY! Thank you for letting me share my story.

To all of you suffering with RSD, God told Paul in II Cor 12:9 "My grace is sufficient for you, for My strength is made perfect in weakness." to which Paul added "Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me." May His strength be manifested in you and may the peace of God which surpasses all understanding, guard your hearts and minds through Christ Jesus.

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