I sit shivering and waiting in my doctor’s office, with my myaligia, my nagging joint pain, and the unexplained sciatica that’s been plaguing me for months. I’m waiting on the results of yet, more blood tests and hoping they will result in some relief. I remember how I waited for twenty years for the diagnosis of hepatitis c to explain the weight of fatigue I carried for decades. I can’t forget the trauma of going from doctor to doctor and being labeled as “it’s all in her head” and then, when they discovered my virus the added trauma of being made to feel that I might drop dead at any moment. That fear pushing me into a hurried choice for treatment with interferon that left me with nothing but depression. Depression that led me to be prescribed more drugs that caused horrible side-effects, misdiagnosed as new disease, for which I was prescribed more medication, to the point of becoming over-medicated. At this moment in time, as I wait for my doctor and test results, I am still hoping to find some help. “I have a new doctor now and a new proactive attitude. This time will be different.” With this thought I bolster myself as I shiver, ache, and wait.
Finally, I hear the knock that breaks my stay. My doctor enters the room and after a polite exchange, gets down to business. My liver enzymes are elevated a bit higher than the low titer elevation they’ve rested at for years and there’s something new. I now test positive for Cryoglobulinemia. “Cryo…glob…what?” I ask. “Cryoglobulinemia. It’s sometimes, associated with hepatitis c infections. It causes the blood to jell when it becomes too cold and it can affect every system in the body. It can result in death by causing the kidney’s to fail” my doctor explains. “So…is that why I have so much pain?” I ask hoping for an explanation that brings me relief. “I don’t know. I can offer you some medications to treat your symptoms but I don’t know if your Cryoglobulinemia is making you feel bad. We could try to treat your hepatitis and see if the cryoglobulins clear but you are a non-responder and your liver biopsy doesn’t indicate the necessity of trying treatment again. In the meantime, stay warm! You might consider moving to Hawaii.” Then he offers me Gabapentin or some antidepressants, which I’ve already tried and no longer wanting to be a guinea pig, I refuse them. He asks me to come back in three months and leaves the room. I sit, shivering, feeling confused and hopeless. Cryo…globu…le…nemia, I memorize the word as I rise to leave with the thought, “It’s cold in here! I guess I need to get warm. Move to Hawaii?”
This is how Cryoglobulinemia became a governor in my life though I now, believe I’d suffered with it for years before this moment. This day of diagnosis is just another milestone in living with a disease long before it is discovered by science and then living on the cutting edge of their further discovery. Cryoglobulinemia has redefined warm and has made staying very warm vital to my wellbeing. The thermometer and thermostat control my every breathing moment and living with Cryoglobulinemia has changed every aspect of my life. Over a decade later, I still shiver and hurt in doctor’s offices, the lab, and sometimes, the hospital with no real answers and very little compassion for my condition other than a momentary look of pity and the now overly familiar, light-hearted advisement, “Stay warm!” I wonder if any of them have ever thought what staying warm means to me or the consequences I suffer when I can’t…like when I have to visit my doctor and the thermostat is set somewhere, between 55 and 60 degrees Fahrenheit? Or when I have to visit even colder labs to have blood drawn and then endure multiple pokes because my Cryoglobulemic blood thickens in such a cold environment. No one has ever asked me how many days it takes me to recover from these visits. I add this to decades of spending money for no real help, with little compassion and I arrive at my cynical conclusion. I don’t want a doctor to melt in a puddle of tears because of his or her empathy for me and my plight but I do want a doctor with enough compassion to go the extra mile to help me rather than take my money and leave me to fend for myself. Anything that I’ve learned in the last decade plus that has helped me stay alive and lessen my suffering has come from fellow cryoglobulinemics that I’ve connected with online and from medical articles that I’ve studied and read for myself. In the meantime, I know I’ve spent enough money on doctors to have put at least, two doctor’s children through college and I’m quite sure some of my dollars paid for the new water feature at my local hospital. I have suffered a lot of medical trauma and yes, I’m very cynical about the health care system.
Yet, I know there are good doctors out there. I do have a doctor now, who cares enough to try to treat me and though I want more from him, I understand his point of view. I know treating a rare disease that he’s never seen and probably, won’t see again is unnerving. I know he’s close to retirement and I’m thankful he agrees to treat me at all. I know a few others in this alliance who’ve found the right doctor and the right help and that keeps me going. They keep me reaching for help. They keep me from giving up. Here I find validation and information that keeps me fighting the good fight, in hopes of overcoming my very, rare, autoimmune disease. Cryoglobulinemia is one small piece of a large autoimmune host of sufferers whose suffering must be addressed. Like a “Who” in “Who-Ville” I’m hoping to find Jo Jo and get him to put down that yo yo! Then lend us that last, small voice, to form the big WHOP that breaks the invisible, suffering sound-barrier so finally, the right person will hear! It’s time to address the problem of autoimmune disease and Cryoglobulinemia. There is so much more to it than just staying warm.