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

Posted on by joyindestructible

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.

45 thoughts on “Rare Disease Awareness Day 2/29/16: Cryoglobulinemia and Me”

  1. Well said. I am so sorry for your discomfort and pain. I am sorry for the insurance woes too, that is a real frustration right now, in many people’s lives.

    There’s a couple of women I look after, totally different disease, but they cannot get their hands cold or the blood begins to congeal, they swell and turn purple, their skin will split. They are older too and their circulation is already poor, so the effort that must go into keeping their hands warm just getting from the car to the door is pretty remarkable. Gloves of course and hand warmers, but a few times it has not been enough and we are left with painful, swollen hands that you cannot rub or they will bruise horribly.

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    1. That sounds like Rhenauds Syndrome. It can be part of cryo too. Thankfully, I don’t have that. Some people I’ve talked to have to use gloves to get things out of the refrigerator. I was 48 when this part of my long battle with hep c started. I’m fifty-nine now. I think they way I write about myself makes people think I’m 80. Thank you, for reading and caring. God bless.

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  2. WOW . . . Prayers for you and all of your illnesses and hardships that you must endure. I have written you down on a prayer card and will pray each day for you. I am so glad your joy is produce by your faith in God and your trust in Him. May He continue to use you to glorify Him though your pain and suffering. ~ Have a joyful day with Jesus ~

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    1. Thank you, Deborah for your thoughts and prayers. God is good. Writing is a good way for me to work through things, escape from my reality for a bit, and chat a little with good people. You are a blessing to me in many ways.

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  3. Wow, we never really know what people are going through when we are separated by our mobile screens… Thanks for sharing your hard story. You’re spot on about the tendency to forget and lose contact with those with longterm illnesses. Thank God Jesus never looses sight of any of us. Hang in there, Sis.

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    1. Thank you, Ufuomaee. You are a blessing to me and no matter how I might criticize what the virtual world is doing to our culture, I am very grateful for the internet allowing me a ‘window’ into the world and a way to communicate with others. In many ways, it has been a life-saver. You are a blessing to me.

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      2. If not in this life, then in the better world to come! In that better world, I’ll have good health with no end! Every day, I look forward to that. I also, know He change everything in an instant because He’s done so before. He won’t abandon me. Or you.:0)

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  4. Wow. I had no idea you had this condition.
    Evidently it has not touched your Hillbilly humor ☺.
    Prednisone was a wonder-drug for me too. (They gave it to me for Poison Ivy).
    I became an energetic and positive version of myself on it. Slept very well, all my pains diminished. Too bad you can’t stay on that stuff indefinitely…

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  7. Pam,
    I’ve just prayed for God’s grace to sustain you. If you ever need prayers let me know. I have never even heard of the name of the disease before until I read your blog. Thank you for sharing this, I hope and pray God would use this post to minister to others and be evangelistic to the Lost.

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    1. Thank you, Jim. I think of you as a dear son in Christ and you’re also, pastoral support in my life when I have none. Thank you so much for that. I pray God uses my many words for His glory. God bless and keep you and your family, always.

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  8. Wow! Thanks for sharing your story. I thank God You have an Anchor for your soul and I’m so glad that God’s Joy is indestructible in your heart.
    I am saying a word of prayer for you right now that You will never feel alone because God will envelope you with His love.
    We just never know what others are going through. You have taught me to be grateful the more no matter my situation
    Blessings,
    Oluseye

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  9. I know it was difficult for you to write and share all this–but not as difficult as enduring it, with or without writing about it. I will keep you in my prayers, and also I will pray for those who are studying and researching to find a cure. J.

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  11. Wow! I am so so sorry that you have to go through something like this Pam. Even the name scares me but there is a God who knows best. I am going to like the post only because I like the education it gives. may God protect you.

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    1. Thank you, sweetheart. He’s brought me through many things. Your support means a lot. Because of this post, I’ve been asked to write for the cryo alliance. Hopefully, my words and the words of others there will open the door to educate doctors about this disease and perhaps, garner some money for research. God is good and in Him there is always hope.

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  13. Thank you for opening up about this. As I was reading, I thought of Prednisone, because one of my grandchildren, had Purpura a little after she was born and was treated with it. It took several months treatment, and she was cured. However, I have always suspected a re-emergence would take place at some point. Hasn’t yet. But this is remarkable, what you endure. Of course, knowing a little about you, you’ll beat me up if you suspect me of feeling sorry for you. But I’m glad to be acquainted with your plight. Now I can pray regarding this. I won’t lightly dismiss you, instead you will be on my mind.

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  14. I am so sorry about the pain you very. I thank you for taking the time to explain this disease. It is true that I have never heard of it. Your writing about this complex issue is understandable. I’m glad you know the comfort of Jesus.

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  15. Pingback: Rare Disease Awareness Day 2/29/16: Cryoglobulinemia and Me | Alliance for Cryoglobulinemia | You Are RARE But NOT Alone

  16. Wow I found it on your blog, I was originally looking on the cryo site. I am glad I had read this, I understand more about your problems fully. Thank you for the opportunity.

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      2. Yes I was amazed and will go back to the site again. I book marked it and might show my daughter who has thyroid the reason for saying that is disease the same as me actually both my daughter do have thyroid disease. Genetics gone crazy here. They got it from me. Anyway rambling a bit and not getting to the point. One daughter has wonky blood showing inflammation in her blood and Doctors here are bemused by her genetic make up. I was looking around on the net yesterday trying to find something one doctor has suggest Rheumatoid Arthritis, I am no doctor but I am thinking along the lines of Thyroid related . I found a great deal of info on your site leading to other sites.

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      3. I have low thyroid too. Cryo can affect the thyroid but I think my problem is damage caused by interferon when I went through chemotherapy. I hope your daughter gets it figured out and gets the help she needs. If it weren’t for medical info on the net, I think I’d be dead by now.

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