|The rheumatologist gently said, as he took both my hands in his, “I’m sorry to tell you this but you have a disease called “Scleroderma”. That was in September 2003. One month after marrying the love of my life. I turned to my new husband, Scott, and said, “I’m so sorry, you didn’t bargain for this.” Scott replied “you’re wrong, I signed up for everything with you”. He asked the doctor, “What is the prognosis?” “It’s a terminal disease, there is no cure, best case is 5 years and pray for a cure”.
We walked out in a daze but in my mind I was saying, “There is no way I’m dying in 5 years! ”My husband’s first reaction was to sell everything and move to Hawaii
|since cold weather causes additional symptoms in Scleroderma patients. I appreciated his gesture, but what if worst case happened and I did die? He would have no wife, no money and would be starting over in his 50’s. Not very fair in my mind. I told him no, we would build our business and retire in 7 years. “Don’t worry, I’m not going to die,” I told him. I had been working in an outside construction business and quit my job and started working with my husband in his construction business. After all, a “terminal” diagnosis does have an effect on the priorities in your life.
Karen & Scott on their Wedding Day
Karen was diagnosed with
scleroderma one month later.
I had heard the word Scleroderma before - I had a friend who died from the disease - a long protracted illness with an amputation involved - so when I was diagnosed in September 2003 after 5 months of seeing doctors before I received a diagnosis I was shocked. I was always healthy, a fitness nut, working out with weights in the gym 5-6 days a week. Eating healthily, barely drinking, not smoking. I never asked “Why me?” but I did ask, “What am I supposed to do with this disease? I have it for a reason, I know it’s not to die … maybe it’s to help others”. This disease affects 300,000-500,000 people. The SAME number of people who have Muscular Dystrophy, the same number who have Multiple Sclerosis. Everyone has heard of those diseases - very few have heard of Scleroderma.
It started with pain in the bottom of my feet in April 2003. I went to my orthopedic surgeon and he diagnosed “plantar fasciitis” from too much cardio. A couple of weeks later I woke up, attempted to throw the covers off of me and burst into tears. My hands and wrists felt like they were on fire and my fingers were curled up into a claw. I knew something was seriously wrong but I didn’t have any clue what it might be. I could not open a door, a jar, I had no grip strength - all I had was a hot searing pain like a blowtorch was on my hands and wrists. That progressed to my entire backside feeling like it was on fire. A previously scheduled trip ensued to my OBGYN for my annual physical - he found nothing. I went to a physical therapist/sports doctor and he checked me and said he did not know what it was, but it was nothing commonly found. (How right he was.) I was then referred to an internist. He ran scores of blood tests and referred me to a rheumatologist. She prescribed medication, prednisone, and told me to get off of my feet because of swelling in my legs. She had an ultrasound done on my pelvic lymph nodes to see if there was blockage, I had a cat scan, I had x-rays, I had more blood tests. I ended up in the emergency room from pain after 5 months of back and forth with doctors and was referred to a specialist in rheumatology who finally diagnosed me from seeing many cases like mine. He ran additional blood tests and confirmed the markers in the blood.
I immediately went on a research crusade.
Scleroderma (SKLAIR-uh-DUR-muh) gets its name from two Greek words meaning "hard skin." This is the salient feature of the illness - taut, thickened skin, so much so that it can be difficult to bend fingers or to smile. For unclear reasons, the body overproduces collagen, a protein that supports skin and organs.
At this point I was on information overload. Everything I read said no cure, this trial has not proven productive, this drugs works on this symptom but causes additional symptoms, etc. All the while, my doctor is prescribing drug after drug after drug to suppress the immune system. I, of course, being a good patient, filled the prescriptions then came home and did my due diligence on the drugs and didn’t take them. The way I had it figured, my doctor was trying to keep me going for those 5 years and didn’t really care about the liver and kidney problems associated with these drugs for my future. Since I had no intention of dying from this disease I certainly did not want to complicate matters further with additional organ involvement. I decided pushing through the pain and living with it would be my options until they 1) discovered a cure or 2) something came along that made sense to me. Some days I was bedridden and some days were manageable.
My parents were so devastated. I am extremely close to my father and stepmother and I could see the anguish in their voices and their faces. I felt horrible that they had to deal with this, also. My daughter cried and was afraid I wouldn't be around for her and would miss her wedding and my future grandchildren. Our friends were shocked. They did their own research and offered the information they found - none of it showed much hope. I was constantly reassuring everyone saying, "I'm fine, it will be okay, I'm not going anywhere" and in the back of my mind wondering how the heck I was going to beat this disease.
It was around this time, some of my cousins intervened and asked me to go to a support group for Scleroderma. They felt I was not dealing with the disease and said things like “You do know you are going to die from this disease don’t you? “You never ask for help”, “You don’t need to be so strong all the time”. To appease them I agreed to go to a support group. I found the support group very depressing. I was surrounded by pinched, tiny wrinkly mouths, black fingers, black toes and feet, oxygen tanks and everyone telling terrible stories of their disease. I agreed to go back to two more meetings because doctors from Stanford and UCSF were going to speak. I was hoping they were going to talk about something promising in the clinical trials. They offered no hope except to look to the future, give your skin biopsy to help others in the future, and how hard everyone is working for a cure.
I do believe that everything happens for a reason and at that final support group meeting I met Kim Leal, the founder of Dusty’s Place, a Scleroderma survivor
herself, and with her was one of the women she was helping named, Joan. When Joan started the treatment with Dusty’s Place she could not drive, dress herself or wear makeup - her hands were little claws with massive sores and she had to have help with everything she did. Everything was painful to hold, to touch etc. Her doctors had told her to write her will. It’s 18 months later and Joan is driving, wearing makeup, dressing herself and is thrilled. The two other women that started the program with Joan, one who played classical piano and was a nurse who had ended up bedridden with her husband carrying her everywhere, are also doing great. Everything in their lives has changed due to Dusty’s Place and Kim Leal‘s program.
I have just started the program with Dusty’s Place and I have no doubt I will also see the dramatic changes. After all, I have a lot to do here in this lifetime.
I am looking forward to the future,
To contact Karen - firstname.lastname@example.org