By Eileen Propp
I have been asked to share my story many times and I always struggle to start writing. I am a writer, researcher and communicator yet I struggle to tell my story, why? My block stems from my belief that I am not defined by my body or by my job.
I am a 41 year old woman living with a rare chronic illness called Essential Mixed Cryoglobulinemia (EMC). I have been formally diagnosed with EMC since I was 26 years old but I believe that I have had this disease since I was a young child.
I had 6 broken ankles between fourth and eight grades; all of them happened during the winter months when I was exercising, walking or using stairs. But in sharp contrast to my athletic days there were days I could do nothing because I was in so much pain or so tired. I lay in bed and slept to recover. My mama supported me with unquestioning faith. When I hurt or was tired I told her and she believed me.
After graduating college I was misdiagnosed with Progressive Systemic Scleroderma. I began to take immuno-suppressant drugs to treat Scleroderma and continued working as an ASL interpreter. Then in 1997 everything began to change. I went to the snow for a women’s wellness retreat. After dinner I walked down the hallway and began to lose touch with reality. I felt far away and could not think. I ended up in the hospital with heart failure due to EMC.
From 1997 to 2002 I experienced serious symptoms from EMC: blood clots, collapsed lung, joint destruction, joint surgeries and so on. I tried many immunosuppressive drugs to quash the EMC. I was given Cytoxan and other chemotherapy drugs to suppress the EMC. In 1999 the disease was winning so my doctors and I had to change tactics. I was put on plasmapheresis treatment in 1999. Plasmapheresis removes the plasma and replaces it with donated plasma. The cryoglobulins live in the plasma so when the plasma is removed you remove the damaging cryoglobulins. My doctor likens the apheresis process to vacuuming a dirty window but leaving the window open. In other words the cryoglobulins are still being produced by my immune system, making the windowsill dirty all over again. To get treatment I went to the hospital two to three times per week. I remained on apheresis two to three days per week from 1999 until 2006. In 2006 I started getting a drug called Rituximab because EMC again seemed to be accelerating again. In 2006 I was given Rituximab and began to transition off of apheresis. By February 2007 I received my last apheresis. I now rely on Rituximab and Cellcept (another immunosuppressive drug) to suppress the EMC.
I would be remiss in sharing my story if I did not tell you about my supportive, kind and loving husband. I met my guy in 2002 while I was still in graduate school. I called him after our first date to tell him that I had a rare illness. I explained that I had to go to the hospital and get treatment 2-3 times per week and would likely have to do this for life. I delivered the news with the tact of a flea and the expectation that such a smart guy would run for the hills. He was not so easily dissuaded and taught me many things about love. This is a gift that I feel so lucky to have. We married in 2004 and it has been wonderful to have him as a supportive friend and husband. I know that the love between us is strong and will not be broken by this body that continues to betray me. There are so many joys and highs in my life that I would not have known without my dear husband.
In the past few years my service dog has blessed all over my life again. My service dog is an American Labradoodle that was trained to help me carry things, open doors and seek help in an emergency. The relationship between a handler and service dog is very unique and difficult to describe but I can say that he is one of the greatest joys of my life! My EMC flares when the temperature drops. The doctors do not know the temperature at which I will flare or experience painful symptoms but Montana does! He seems to be able to smell the change in my body before I start to shake, feel too cold or get sores. Montana’s body temperature is 102 degrees, so I can use his body heat to warm me up when I hurt or flare. Montana goes everywhere with me and is viewed as ‘medical equipment’ under the Americans with Disabilities Act of 1990. He is trained to behave in public, go under tables and be available to do specific trained tasks to mitigate my disability.
I am very lucky to have a supportive family, an amazing mom, a loving husband and a service dog. My life is rich and full of so many wonderful things. Living with a chronic illness, fighting to live and getting through loss have only made me happier that I have the life I have.
Watch Eileen’s documentary
Eileen Propp PSA
