Goodwill Employee Makes A Big Difference in Raising Disease Awareness
We are very proud of one of our employees who has made a significant achievement in raising awareness for Complex Regional Pain Syndrome (CRPS). Jennifer Ogden has worked diligently to raise awareness of the condition to further research and and treatment of CRPS. In doing so, she has received a proclamation from Governor Phil Bryant to make November 2, 2015 “Color The World Orange Day” in the state of Mississippi to raise awareness of the disease. We invite you to wear orange today to show your solidarity and support a member of the Goodwill family.
Read Jennifer’s words here:
Jennifer’s Warrior Story
I’m not living with CRPS. I’m helping my daughter live with it. My Annajane is 18. She was diagnosed with CRPS in December 2014 following a minor injury to her Achilles’ tendon. But she is one of the lucky few. She was diagnosed just 16 days after her initial injury, thanks to a quick referral to an excellent pain management specialist from our well informed orthopedist. I later came to know how rare this essential early diagnosis really is. Only 15% of CRPS patients are diagnosed with in the first 6 months.
With this diagnosis, we went to war. First, WHAT are we battling? Second, HOW do we battle it? Information on this beast was scattered and contradictory. Treatment options were a crap shoot. And whom do you call? With cancer, you call an oncologist. Broken bones, an orthopedist. Heart disease, a cardiologist. But CRPS . . . no one specializes in this.
So we put our faith in our pain management doctor and began the woefully inadequate CRPS protocol. In addition, I found that the nursing staff at the outpatient clinic where Annajane was receiving treatment had never heard of CRPS. My beautiful girl endured 10 nerve blocks, as this is the standard of care for CRPS. She got very little relief from these bi-weekly blocks. Then her doctor suggested a three day epidural infusion. It took another three weeks to get approval from the insurance company. Their medical experts had to research CRPS before they would deem the infusion medically necessary. I made an appointment to see our general practitioner for guidance. He had never personally seen a case of CRPS, so he had no idea how to advise. Then I found a support group on line. Finally! People understood! And these people were better informed than the people treating my daughter. I trusted my gut and pushed forward with the infusion. During a rare Mississippi snow, she checked into the hospital with high hopes. Three days later, joy! It worked! Annajane then began physical therapy to rebuild strength and range of motion. For a few weeks I thought we had done it. We can get back to normal life. So we booked a room for a family wedding in the spring and planned a summer beach trip. But the beast came back with a vengeance. The beast was MASSIVE and strong. The pain Annajane endured during the following awful weeks was indescribable. Her autonomic nervous system was turning on her. Her leg was ice cold, purple and swollen. Her foot was dystrophic. It began to spread up to her hip. She could not sleep. She could not think. The unceasing, excruciating pain was killing her soul. My bright, energetic, friendly, optimistic girl became dark and angry. She had to quit school. She cried all the time. And she spent hours researching amputation. The narcotics she was prescribed made her nauseous and didn’t touch the pain. The Lyrica they prescribed made her suicidal. I was able to get her into biofeedback which helped her relax. All the while, I was still battling our insurance company. She was forced into MORE nerve blocks–again, the standard of care. Again NO relief. And then in June, she was finally approved for a 5 day infusion. I was surprised that I had to educate the floor nurses as to CRPS and the treatment she was undergoing–again. There were complications involved with the infusion, but it worked for Annajane. Afterwords she continued physical therapy and biofeedback. She completed all her missed school work. She rebuilt friendships. She rebuilt her self esteem. She rebuilt her life. And she found hope again. Annajane is one of the very few CRPS sufferers with a positive outcome. She is currently in remission. She has had two minor flares since her infusion in June. Both were controlled relatively quickly with epidural shots. Her positive outcome was the direct result of a well-informed orthopedist who recognized the symptoms at their onset. 1.2 million people suffer from CRPS. Many are disabled. Many suffer depression and anxiety in addition to the debilitating pain. Many are labeled as drug seekers. And some lose hope altogether and commit suicide.
I have joined this campaign because I have never felt as helpless as I felt these past months. I was powerless to ease my child’s suffering. The medical professionals I trust and rely on are ill-informed. First line doctors, emergency room physicians, orthopedics, and general practitioners need to be informed and able to recognize CRPS early. Treatment options need to be updated and recognized by the American Medical Association so that our insurance industry will approve these treatments. Light needs to be shed on this dark beast.