My name is Marianne. Prior to chronic illness; I was employed in the health and fitness profession. In November of 1998 I was healthy and competed in the Ms. New Jersey Body Building competition. However, by December 1998 my health had radically changed. I was sore, in pain, fatigued and no longer able to lift my arms. The illness onset was rapid and totally debilitating. I had to dissolve my business and I was forced to stop working. This was the beginning of the first onslaught of diagnosis. In 1998 I was diagnosed with Lyme disease, Fibromyalgia, Chronic Fatigue Syndrome, Rheumatoid Arthritis and Raynaud’s. And most recently in 2009, I developed severe anemia, numerous infections and eventual kidney failure. My body was in a chronic state of illness, leaving me weak and unable to perform the simplest tasks. After 10 months of biopsies and extensive tests, I was diagnosed at the Mayo Clinic in July of 2010, with Mixed Essential Cryoglobulinemia, Hemolytic Anemia, Leukocytoclastic Vasculitis and Monoclonal Gammopathy. My doctors are beginning to see possible connections between my autoimmune diseases and now this rare disease.
There is disconnect between diagnosis and how a patient cares for themselves following diagnosis, is highlighted by my experience. The doctor told me I had cryo and said ‘stay warm!’ With that advice in mind, I ventured out into the world with hat, scarf and all my warm gear. I developed congestive heart in January of 2010 due to this lack of information on how to care for myself. What was lacking in that ‘stay warm’ advice was the explanation that anything below body temperature, 98.6 degrees, can cause the cryoglobulins in my blood to gel and thicken causing mild to serious complications including organ failure and stroke.
I have learned from other patients that it is my responsibility to discover the temperature that causes this to happen which leads to flares and complication. Now I know that I am affected by outside changing temperature, air conditioning, fluids that enter my body and water that touches my body, even cold air that I breathe. This affects my daily life significantly because in cooler weather I can only go outside if and when necessary according to weather conditions. My face, as well as every part of my body, must be sheltered from the extremes. My car is always preheated. Air conditioning can cause me to black out so I am vigilant in the summer as well. The hospital of all places is one of my worst enemies because of the cold procedure and operating rooms, cold infusions, and cold instruments. A simple task like grocery shopping means wearing gloves even in the summer because of refrigeration or freezers. I am adapting to this new way of life and have accepted the challenges knowing that prevention is an important part of my wellness. I like many chronic illness sufferers can experience fatigue, muscle weakness, joint pain, purpura, extreme swelling of my legs and feet, memory loss and confusion on any given day. For me that is level one of chronic illness: this is my norm. In spite of it I try to live each day in awe of each moment.
The second level happens as serious physical losses, treatments and treatment side effects come to the play. Yet each time I have a set back I continue to cherish the resilience of the human body when I find myself in the path of normal living again. And finally the third level is the fear and the negative influence the first two levels have on my mental health and spirit. But my husband is always there to help guide me through and with the support of family and friend’s life is always renewed again. I felt so alone and scared when I was first diagnosed because there was so little information online about cryo. I couldn’t find a support group or organization to assist me in finding out how to care for myself or to help diminish the feeling of isolation so I started educating myself about rare diseases. In my greatest moments of fear and despair, I promised myself that I would never let another person feel as lost and unsupported as I had felt living with this disease. Through networking, collaborations the dream is now a reality via the RareConnect Cryoglobulinemia Community, Twitter, Youtube, Facebook and Alliance for Cryoglobulinemia.
I will continue to work diligently to bring support and awareness to cryoglobulinemia and those living with Cryo, to connect with our healthcare professionals regarding treatments and research and to help better understand this mystery of temperature control for each individual patient. My days are also focused on advocating as a rare disease advocate, networking and connecting communities through social media and health conferences, educating new patient advocates and supporting all those affected by Rare Diseases. There is still so much work to do for the cryo community and I pray that I can make a difference for other cryo patients through the Alliance for Cryoglobulinemia.