As much as our pride wants us to keep this to ourselves and just deal with it, we have asked God to soften our hearts. We’ve asked to let us allow people to help. To ask people to help. This is a difficult thing for us to do, but this is the point we are at with Karen’s on-going health needs.
In April, 2009, after several months of debilitating illness, and numerous visits to various doctors and misdiagnoses, my wife, Karen, was properly diagnosed with collagenous colitis, an inflammatory disease of the bowel, closely associated with autoimmune disease. As a result of this disease, she lost a significant amount of weight, had no energy or stamina and ultimately lost her job and the high quality of life she had experienced. It is well known in the medical community that once you have an autoimmune disease you are susceptible to getting others. This has been the case with Karen.
Since 2009, she has been diagnosed with lupus, vasculitis and two connective tissue disorders. She also has the marker for Crohn’s disease. In 2016, after having Moh’s surgery for a very small skin cancer on her leg, she developed a very bad infection, which her doctor first claimed wasn’t possible. She actually had developed two infections in the wound, which grew to a considerable size on her shin. Additionally, she developed pyoderma gangrenosum, a rare autoimmune disorder that causes tissue to become necrotic and develop into ulcers on her leg (see below). We have been treating this leg wound itself for nearly 2 years.
As a result of her illnesses, the impact of the medications on being able to sleep and how bad she feels all of the time, she has missed out on many things, including no longer having a professional career, and numerous family activities and events, even our youngest daughter’s wedding last month. So in addition to the physical and psychological pain she experiences, she also has the emotional pain of loss and regret that has come due to these diseases.
In traditional western, evidence-based medicine, the treatment for most autoimmune diseases is with powerful, high dosage immunosuppressant and steroid drugs, Prednisone, Methotrexate and Cyclosporine. Karen has taken all of these over the past couple of years and they have some very challenging side effects, the accumulation of which is that Karen just feels very bad all the time. In her words, “I never feel well.” The immunosuppressant that she is on now causes skin cancer to present every few days. We continue to deal with those lesions as quickly as possible so they do not evolve into any type of carcinoma. On February 12, 2018, one of her doctors said “this is your new normal” as long as you are on these medications. Her Rheumatologist told her that other than these drugs, he was sympathetic, but couldn’t do anything else for her. This in unacceptable to us!
We have begun looking into alternative approaches for Karen’s treatment, believing that this does NOT have to be her new normal, and that there is something that can be done. One promising approach we have found outside of purely traditional medicine is Functional Medicine. Functional Medicine approaches disease from a holistic and integrative perspective, seeking to find the root causes of disease, focusing on interactions between the environment and the gastrointestinal, endocrine and immune systems. Physicians who practice Functional Medicine are traditionally trained medical doctors (MD), who incorporate these more holistic and integrative approaches. Another promising, and cutting edge, approach is the use of stem cell therapy to treat autoimmune disease. It, however, is very expensive, about $10,000 per treatment.
As is the case with most promising alternative approaches to medicine, insurance companies will not cover either of these kinds of treatment. With every appointment comes a cost. With every procedure, treatment, therapy and medication comes a cost. With every doctor’s protocol we’ve tried, there are costs that that we couldn't prepare for as long as these diseases rage within her body.
Karen has demonstrated courage in the face of adversity, will not succumb to depression or a negative state of mind. Rather, Karen has been an inspiration to many people who have known her or just met her. If the question of “How are you doing?” comes up, she is always very positive, believes that this mindset has a direct impact on the dynamics of the diseases she’s fighting and demonstrates her faith in a positive manner.
So, first and foremost, we need help with getting one, or both, of these alternative treatments for Karen to return her to a better quality of life and get her off of these powerful, but damaging, drugs. Any funds raised will go to cover visits with the doctors, tests, supplements, and other treatments as needed. If we raise enough for stem cell therapy, we will invest in that approach. If you cannot donate, prayers and thoughts are also encouraged and appreciated. It takes all forms of help to beat these chronic, debilitating diseases!
We are people of faith and know that God can, and does, work through others, even alternative doctors, to bring about healing and wholeness. That is our prayer for Karen.
Thank you in advance for helping Karen continue to make a difference. Please share her story with others who may be moved to help.
All donations will be transferred directly to Karen. If you have questions about this process or about the campaign, feel free to email us using the contact link on the campaign page.
"Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day" 2 Corinthians 4:16
Thank you so much,
Tommy and Karen