You can email us at:lifeogesongoes_rsds@yahoo.com
OUR WEBSITE::::
www.lifegoesonrsds.org
We are a non-profit organization. Life Goes On is a support group for patients, caretakers, family and friends with REFLEX SYMPATHETIC DYSTROPHY. May is our awareness month.
Our group’s goal is to provide necessary medical equipment to .. patients who can not afford it, but need the assistance to make their lives more manageable. This year Life Goes On is hoping to open a leech clinic in Orange County. Dr Nicholos Grumbine, DPM, is the medical director of this soon to be establishment.
Every .. patient is unique and in my experience and research of handling ..ers, there is always someone out there that has one thing in COMMON....EXCRUTIATING PAIN. We are here for you morning and night.
My phone number for Life Goes On is 909-528-3782. You may contact me anytime you need to talk
PLEASE IF YOU ARE .. PATIENTS OR NOT AND JUST WANT TO LEAVE TOPICS, REPLY TO TOPICS, POST BULLETINS.....PLEASE DO SO. THERE IS NO RESPONSE THAT IS NOT HEARD.
IF YOU ARE AN .. PATIENT OR A CAREGIVER OF ONE PLEASE SHARE YOUR EXPERIENCES AND STORIES WITH EVERYONE. IT WILL HELP OTHERS LEARN WHAT .. IS.
SPREADING .. AWARENESS ONE PERSON AT A TIME.
MY STORY::::::::::
Through a long process of siphoning out life and its meanings, I came across three letters on a BIG piece of paper in 1995 reading "..". They were given to me by a neurologist who specialized in this field. Unaware of what they meant, I felt I should be scared by the look on the doctor's face as he said he was "Sorry". My dystrophy began in 1995 with carpal tunnel and cubital tunnel syndrome. I was an auditor for a local savings and loan. I went to my doctor after my hands would not stay awake. He sent me to an orthopedic surgeon and advised me in filing a workers compensation claim.
I filed a workers compensation claim and was referred to an orthopedic surgeon at Loma Linda University Medical ... I underwent bi lateral carpal tunnel releases and bi lateral anterior transpositions of the ulnar nerve (meaning they reconstructed the nerve in my elbow). Two weeks later my hands were swelling and I was BLUE. My physical therapists tried to apply ice to the affected area but it only sent the most excruciating stabbing pains into my hands and arms. I couldn't get the ice off of me fast enough.
I went back to the work comp doctor who performed the surgery and he said there was NO silver bullet recovery to my condition. I would just have to live with it. I asked him what it was and he could not give me an answer. He acted as though I was nuts and it was "all in my head". He filled me with pills and sent me on my way. For two years I lived on pain pills and muscle relaxers as my hands and my arms became weaker, bluer, and the burning-stabbing and charlie horse pain drove me to tears.
My husband and I decided this was enough. I had three small children at home. A daughter who was three and twin boys that were only a year and a half.. I was having trouble taking care of them. My husband was paying nanny's to come in and help me out. It was costing us a fortune to keep my head afloat and be able to take my medications. My attorney set up an appointment with a doctor he knew very well and was well educated in ... (My attorney had diagnosed me before I even saw the doctor.) When I was through with my visit, I walked out of the room staring at the piece of paper that I held in front of me. My dearest brother, David, had brought me down to the appointment and stayed with me.
By the help of the .. Association in New Jersey, I was able to locate doctors that specialized in this dystrophy. I made an appointment and went for a consultation. He gave me a plan he wanted to proceed with and fought for authorization from workers compensation. Unfortunately they would not approve anything and I coasted another two years on more medications. Whatever I could use to get through the day. Although I was NO good to my children or husband. All they new is mommy would cry a lot and her hands and arms would hurt really bad. Countless times I had to tell my children No, I cannot hold them. I was afraid I would drop them and my body did not have the strength.
Finally after going to trial with workers compensation the judge ruled I had .. and to proceed with treatment. I underwent eight long term cervical epidurals over a two year period with extensive physical therapy. The more and more I tried, the more and more I was finding other parts of my body stabbing and burning. I woke one day to find my left foot blue and swollen. I could not put any weight on it and scheduled an appointment with a specialist. He took me right away and diagnosed me with .. in my left lower extremity. Over a period of several more years the .. crossed over and I had it full body. It took its course very quickly.
While lying around with tubes coming out of my back, my husband would lean me over the recliner chair and wash my hair or bathe me in the bathtub. Tired as can be from a long day of work he would come home take care of the kids and cook dinner for all of us. Then put me to bed. Over the course of this time he spent countless nights in the hospitals while my flares became out of control. I was admitted on the cardiac unit with a lidocaine drip to calm down the nerve. He would sleep on the floor next to me and my children would come to visit. Petrified looks were on each of the children's faces as they watched all these tubes on mommy.
This dystrophy took its course and I, after twelve years, have it from head to toe. My children only know me as a sick mother. They were too small when this disease entered my body. They do not remember me spunky and vibrant. But sick or no sick, I was not going to let this get me down. After the state signed into legislation May as our awareness month, I started doing walk a thons in my local town. I met with a quadriplegic that has a camp called "Camp Attitude". His name is Ron Heagy. I wrote a short story titled "The Morning After" in his book "Keep Smiling". I organized a group called IWON (injured workers opposing negligence), and have fought my way with the system to help others out. Maybe I suffered but why should anyone else.
I am now 36 years old. I have had this dystrophy for twelve years and have been with the same man for 16 years. My daughter is now 15 and my sons are now 13. I offered my husband a divorce many years into my disease. It was not getting any easier and I felt he deserved a real wife, not one that could not do for him. He struck me by surprise with words of romance. He said he took a vow in sickness and in health and that he loved me no matter what I could do. I had to divorce this man after social security law would not let me remain married to him. We both cried in the courtroom as we looked at each others faces. I knew married or not, this man would be by my side with this disease and never leave. And he has not. All I can say is we have had the strongest bond since I became sick. He is my inspiration. Love is amazing how unconditional it can be.
I have a heart condition now and problems digesting my food. But nothing holds me back from spreading the word of .. or enjoying life with my family. I love them more than life itself. They are what keep me going everyday. I thank God I see the sunrise each morning and I am ever so grateful to see it set.
I have had 19 surgeries in 12 years. My children know me more in a hospital bed then at home. But God gave me this dystrophy for a reason. This reason was to tell others about it. It was also to show me the true meaning of life. I was so ungrateful for so long. But when I got this dystrophy I realized that life was so precious and never to be taken for granted.
I deal with pain everyday and I fight for life every moment as anyone with .. does. I do physical exercise and use a cane, walker, or wheelchair when needed. It depends on the flare or the day. I have my days I am strapped in bed and cannot move. I have three little angels that come in and make me food, bring me drinks, and hug me till my heart bleeds. My children have a hard life as they have a mom they have to help out a lot and take care of. But they NEVER once complain. They are always willing to be there for me.
Life does go on and mine has. No matter how bad it is nothing can make me stop loving.
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