Rare Disease Day 2016, More Than Just Cryoglobulinemia

Today is Rare Disease Awareness Day and since I have a rare disease called Cryoglobulinemia, I have a special interest in February 29th, 2016. It’s true that my particular autoimmune disease is very rare but when I place it within the greater context of the many rare autoimmune diseases, I see myself as one among many suffering from a poorly understood disease. It is estimated that 23,000,000 people in the U.S. have an autoimmune disorder; diseases that bear the common characteristic of the body attacking itself. Within my family, friends, and personal acquaintances, I know and love others who suffer from: Multiple Sclerosis, Sjogrens, Scleroderma, Interstitial Cystitis, Rheumatoid Arthritis, Polymyalgia Rheumatica, Excema, and one friend who I suspect has an autoimmune disorder that has remained undiagnosed for years. In fact, I know more people who suffer from mild to crippling autoimmune diseases than any other disease. If I add autoimmune disease to other rare diseases it soon becomes clear that Rare Disease Awareness Day is about everyone. No one is immune to falling victim to a rare disease and facing the accompanying vacuum of knowledge with subsequent, lack of effective treatment.

On this special day set aside to think about people who suffer from rare diseases, my hope is for those of us who live under the chronic weight of diseases with strange sounding names to be viewed as less uncommon. I hope we will be seen in our true light as part of the greater whole and that which inflicts us now could at any time, inflict you or someone you love tomorrow. Awareness is the beginning in the fight to end the ignorance surrounding rare diseases that will lead to research, treatment, and cures.

Knowing that you have taken the time to read this article gives this Cryoglobulinemic woman new hope. Thank you for taking the time to consider the meaning behind Rare Disease Awareness Day 2016.

 

Rare Disease Awareness Day 2/29/16: Cryoglobulinemia and Me

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.

Joyfully I Look Forward to Full Health In Christ

It’s been a tough week. Rough enough to distract me from the eternal joy I have in Christ. I’m fighting a chronic disease called Cryoglobulinemia; which is a form of vasculitis (inflammation of the blood vessels) that goes in and out of remission. It’s been out of remission since about January and it takes time to chemically knock it back in its place. It can and does affect every bodily system by cutting off blood flow. Inflamed blood-vessels can also break and this week, I’ve had problems with profuse bleeding. I’m past the worst of it, I think, but bleeding is scary and the experience has left me drained. Sometimes, I’m tired of fighting it. I’m not suicidal but some days, I long for home.

I and the people of my community are also the victims of an environmental disaster; caused by the mismanagement of the EPA of a Super Fund project involving an old mine at the headwaters of the Animas River in Colorado. I live downstream in New Mexico and the Animas River Valley is my home. I love this river and it is the source of life of all living in the desert I call home. The once sparkling clear water is now flowing, thick, yellow mud containing high concentrations of heavy metals. Heavy metals sink and the Animas may never be the same. My beautiful river turned poison, fills me with sadness and concern for all the people and animals that depend on the Animas for sustenance. Though I am a joyful woman, I can’t help but mourn.

If my reality was the horizontal view of life only, I would give up right now. If I didn’t have Jesus, God’s Heavenly perspective, and the spiritual fruits my faith in Jesus has produced, I would at the least, be bitter, fearful, and angry; but my faith tells me to look up. Neither disease nor disaster can take away the eternal hope I have in Jesus and the new world to come. I have joy to help me endure and a doctor with a sure cure to restore my physical health and also, the health of my beloved river. The blood I shed in sickness, may take my physical life but the blood Jesus shed for me made my spirit and soul eternal. If Jesus chooses to heal me now, it will be for His glory and my temporary gain. I know I will be completely healed when His Kingdom rule begins and I will never have to face death again. I will receive a new glorified body and never re-experience the pain and destruction of disease. God will also, heal His beautiful creation and my beloved Animas will glitter and sparkle with new life that will never cease. All things destroyed by human sin restored as a dysfunctional world is healed and returns to full function, according to God’s design.

By my faith in God through Jesus, I am refreshed and ready to live out the full number of days my Father has given me. My spirit and soul nourished by all the spiritual fruits are replenished. With tested faith found true and hope, I joyfully look forward to full health in a vibrantly healthy world. I rest secure in the promises earned by the One whose body was broken and His blood, shed for me.

 

 

Cryoglobulinemia: The Snow Bird’s Joyful Song

Most don’t think of sixty degree weather as being too cold but I am a snow bird and when the temperature drops below seventy, I need to find a warmer place. I have Cryoglobulinemia and when I don’t stay warm enough my blood, that once ran hot, begins to run cold. It gels, it clots, and it causes my blood vessels, and connective tissue to inflame. The result is pain. The air-conditioning, with cooling relief all long for this time of year, makes my head pound, my vision blur, and my ears ache and ring! I live within a bubble of right-temperature that isolates me from a world that I can see but often not fully enter. I am living in a prison named Cryoglobulinemia. The warden is the thermostat and I’m doing hard time.  I’m sitting on Death Row waiting out the process of pardons and appeals, offered me though medication, until my sentence is complete.

My old, familiar enemy, Death mocks me as he relishes completing the contract Satan has taken out on me. He’s been trying to murder me for a long time. He shadows me, watches me, and then attacks me when my guard is down. He’s been after me since birth and he isn’t happy that I’ve avoided him this long. Following the orders of Satan, he uses his power to oppress and silence me, as he hopes for my final end. It isn’t personal, it’s just business. Satan doesn’t fear me he fears the God I serve. Satan and his faithful servant Death fear Jesus and the good work He does in me and through me. Jesus is a threat to Satan’s power and because I belong to Jesus, I’m a threat to him too. It is enough to distract me from the joy I possess in Jesus and if I let them, these partners in crime will freeze my mind with fear. I turn away; yes, I turn my back on my enemies! And in my spirit, search for Jesus’ face. I focus on that beautiful, kind face, as the present world and the threats of it fade. I come to Him with my fears of mortality and He responds by showing me my eternity.  God’s love pours in, until my heart overflows! Hope is restored and joy surges through me!  I rise above my circumstance and I soar! I don’t take this flight on the small, weak wings of a snow bird; instead, I rise up on eagles wings! Someday, when this broken body completely, fails me, I’ll trade it in for a body even more magnificent than an eagle’s!  I will soar to heights I cannot imagine! As Satan drools in anticipation of my death, I visualize the day when I will meet Jesus in the air! That ultimate day when this future hope I cling to becomes my reality. No more pain, loneliness, sorrow, and no threat of defeat! This promised, glorified condition is the true me, Pam free from sin and sin’s corruption. In my spirit God’s power surges! I cling to Jesus and turn back to face my enemies. I spit them in the eyes! Though they keep me in prison and sentence me to death, I won’t die! When Death makes his final move for me, I’ll reach for Jesus and make my escape into eternal life!

Though my present form crumbles, life will re-emerge and cause a new form to rise; because life is eternal and life cannot die. I don’t belong to material form and death, I belong to Jesus, the first One to rise from death and live! By faith in Him, when I die, He will raise me up to live again. Because Jesus loves me, my song of joy won’t turn hollow due to my disease. I won’t spend many days mourning over the things that I must someday, let go. I will sing no funeral dirge! I sing a joyful song of Jesus and He returns my songs of praise by lighting these prison walls with the light of His glory. My prison cell is transformed and my isolation ends. Jesus puts His arms around me. He keeps me safe and warm. When the numbers of days given me on earth are complete, my song of Jesus will ring into eternity! I am content. I rest in Jesus. I accept my circumstance, as I open my heart to joy!