This is a hard post for me to write. I don’t like to write about my health. Cyroglobulinemia has stolen a great deal of my life from me but I am determined not to allow it to become my identity. However, February 29th has been set aside as a day to remember those who suffer from rare diseases, in hopes of igniting understanding, research, and new treatments for those going through the ordeal of being subjected to a poorly understood or unknown disease. I’m not likely to ever meet another person in my community who is Cryoglobulinemic, my doctor has never treated anyone else with this disease and probably, never will. One of the most disconcerting things about my disease is the look on the faces of health workers when they ask me how to spell, Cryoglobulinemia and then explain it to them. In many ways, I have been forced to become my own physician and most often, I know more about Cryoglobulinemia than any doctor, nurse, or physician’s assistant that I go to for help.
Cryoglobulinemia is an autoimmune blood disorder. Cryoglobulinemia Type I is a primary disease, meaning it exists by itself for no known reason. Mixed Cryoglobulinemia, Types II and III is associated with other autoimmune disorders, some cancers, and most commonly, with Hepatitis C. I have Mixed Cryoglobulinemia associated with the Hepatitis C virus I carried for thirty-three years. I endured 40 weeks of a horrendous chemotherapy treatment and cleared the virus. My Cryoglobulinemia went into remission (I thought I was cured) but returned with a vengeance about three years later. I’ve been sick for over a year now but still remain hopeful that I’ll find a way to put it back into remission.
Cryoglobulins are part of everyone’s immune system but my body makes too many of them, they are deformed, and they don’t die and clear the blood-stream as they should. Instead, they clump together along the walls of my blood vessels, where white-cells attack them and cause inflammation in the blood vessel walls. The result is a type of Leukoclastic Vasculitis. When any part of my body falls below 98.6 degrees Fahrenheit, the cryoglobulins begin to gel and clot, which acts to further impede the blood flow already diminished by the vasculitis. The results are rashes called purpura, welts, hives, and bruising of the skin. Inflammation in connective tissue causes myalgias and joint pain. Nerves are affected and can be damaged in the long-term due to impeded blood flow. Nerve trunks may also, become inflamed. Though text books generally, limit Cryoglobulinemia to medium to small blood vessels, with the effects on skin and joints, there is no body system immune to the ravages of Cryoglobulinemia. It can cause organ damage and the most common death related directly to Cryoglobulinemia is kidney failure, when the kidneys become clogged with cryoglobulins and can no longer function. The reality for those of us with this disease is living with the complete unknown of what to suspect next because what is written in most text books is only observation, derived by those doctors monitoring their Cryoglobulinemic patients. As our disease progresses, their knowledge increases.
My life as a Cryoglobulinemic is ruled by temperature. If I am to survive and decrease my pain, I must stay warm. My ‘normal’ body temperature runs about one degree below what is considered normal for human beings so, I begin at a deficit. I start to feel uncomfortable at any temperature below 75 degrees. I don’t feel cold, I feel pain, and when the first pains began, I didn’t associate it with the temperature. If my core is warm but my arm is exposed and falls below body temperature, I first feel pain as tingling in my skin that deepens to an ache. If left exposed, I develop a rash, hives, or painful welts. These sometimes, pop open and bleed, leaving small ulcers. Welts and hives often leave iron deposits that leave permanent brown spots on my skin. I sometimes, develop painful nodules in clogged blood vessels that can pop and bleed under the skin, leaving small and large bruises. Sometimes, the bruises leave iron deposits too. My skin however, is the least troubling aspect of my being a Cryoglobulinemic. I have peripheral poly nerve damage in my hands and feet and because of impeded blood flow, I have had nerve pain in almost every area of my body. Pain in every form: itching, tingling, crawling, shooting, stabbing, throbbing, burning, jolting, blinding, deafening, don’t touch me, pain. The pain ebbs and flows with the amount of inflammation in my body. Some of the damage can heal between flares but sometimes, the damage is permanent. I have permanent numbness in my hands and feet. I have new numbness around my left eye as a result of this current flare. I also, have bouts of vertigo because of the effect of inflammation on the inner ear. These are my major complaints. There are many more. I ignore the ones I am able to ignore as I attempt to treat the symptoms that are more demanding and a bigger threat to my quality of life.
The most debilitating aspect of Cryoglobulinemia is how it isolates me. In the spring, summer, and early fall, I can go outdoors but I have to avoid public buildings with air conditioning. When the weather gets cold and if I’m careful, I can go from the house to a warmed car and public buildings with good heating systems. When the temperature drops below 55 degrees, it’s best if I stay home. When it drops below 40 degrees, it’s dangerous for me to leave my home. Breathing cold air robs me of valuable, core, body heat that takes time to replenish, causes the cryoglobulins to gel in my lungs, resulting in wheezing and coughing and robbing my entire system of needed oxygen. I feel weak for several days after an exposure to cold. Though my husband and family never complain, I’m sure my house feels stifling to them. Unable to socialize very often and being sick for over a decade now, leaves me with few friends and no way to make new friends. There was a flurry of attention when I was newly, diagnosed but people go on with their lives and a hard reality of a long illness is being forgotten. People don’t mean to. It is just part of it.
At this current moment, I’m taking Prednisone, which for me is a miracle that can’t last. It relieves the inflammation, my pain vanishes, I can see, hear, and the vertigo is still. I can’t take Prednisone as a long-term treatment. The main-stay, current treatment for Cryoglobulinemic Vasculitis is Retuxin. It is very expensive and administered through infusions in a clinical setting. Due to changes implemented through Obama-Doesn’t-Care, my access to good insurance is blocked, even though I must purchase health insurance or be fined. I pay a very high premium, for catastrophic insurance with a $5,000.00 deductible, with no set co-pays, and estimated coverage that fluctuates in cost to me, on a daily basis. I am not being penalized because I have a chronic disease; I am offered only, substandard insurance because my husband and I are self-employed. The only way I could obtain the kind of insurance I need would be to work for the government or a large corporation. By law, I am forced to participate in a system that regards me as a secondary kind of person, who must pay to help provide coverage for others that is denied to me. I am considering paying the fine and using the money I spend on monthly premiums to help pay for the medication I need even though, the idea seems crazy to me. I find myself in what seems an impossible situation and I have some tough decisions to make. In the meantime, the stress is causing my body to produce more cryoglobulins.
I am part of a good, online support group, where I can converse with others who suffer as I suffer. It helps, as our slogan states, to know “You are rare but not alone.” Not because I am made happy by others suffering as I suffer, or worse, but because of the validation that comes only, from those walking a similar path. I also, think of others who suffer from rare diseases unknown to me and even unknown to science, who are suffering and needing answers. I do have Cryoglogbulinemia to thank for giving me a great deal of time to spend alone with God and I don’t know how I would manage any of this without Jesus. I also, have my dear, devoted husband who does so much for me. I have my children, and grandchildren, and my closest friends. I have the dear people here on WordPress, who give me daily encouragement, kindly read my writings, and make me feel I am still in the world. I would rather be well and out doing things under my own steam but I am grateful to God and the kindness of others that enables me to endure and not give up hope. Because Jesus lives, my joy is indestructible.
If you want to know more about Cryoglobulinemia, or wish to donate to research, visit, Alliance For Cryoglobulinemia at http://allianceforcryo.org Please, on the rare leap-year day of February 29, 2016 take a moment to remember those suffering from a rare disease. Cryoglobulinemia is only one of many.