My name is Kathy and I am 38 years old. I was first diagnosed with Cryoglobulinemia (cryo) over 3 years ago now but have had it for 4 years. You are told that something else has happened inside of you and your body has tried to fight it and for some unknown reason the body got confused! The body turned on itself by building up bunches of cryo that cannot be taken back. There is no cure and no medication to control cryo. Medication tries to keep it down, by helping the original issue that confused your body in the first place! This is when you have to go through all kinds of tests and blood work possible to see if the doctors can find the original, underlying disorder. At first, it seemed as if there was no answer for mine. However, later the doctor thought he found traces of Multiple Myeloma so I had to have a bone marrow extraction. This is when they found I had Monoclonal Gammopathy of Undetermined Significance (MGUS). I was told not to worry cause it only grows 1% a year and hardly ever develops into Multiple Myeloma (MM).
It was pretty hard since we had just lost my mom’s baby sister to a rare cancer that is usually only found in foreign countries; described as a liver fluke. It had turned her liver cancerous and was found too late. All our time was spent on her trying to make the best of memories we could. All of us girls dressed up, had slumber parties, danced in the rain and had lots of fattening foods! We have Irish in us and it was her favorite heritage. As God would have it, he took our beloved angel right before Saint Patrick’s Day and that was when we buried her. Toward the end I couldn’t be around her as much because we didn’t know what was going on with me. My uncle was afraid of her getting any worse. I kept getting more and more rashes, with no answers that drove me crazy. I even made a joke about being a mystery diagnosis case. Little did I know where life would take me or to whom I would come across.
When I found out my true disease it was a shock and so confusing. You have so many things going through your head at once. You’re faced with something you have never heard of and you can barely find any information on it. You wonder what is going to happen and why you? Where did it come from and where is the cure! How did I end up with something so rare, but most of all am I ALONE? Feeling alone was the worst part of all for me. The doctors couldn’t answer my questions personally and most everybody else just shook their heads saying they had never seen or heard of such a thing. I felt strange, scared, and very very alone!
I got on facebook one day and did the usual checking of mail, answering friend requests, and seeing what was up with everyone else. Afterwards I tried to do more searching of information on my disease or other people like me. This time I was in facebook’s search bar and this is when C.V.O popped up. The group was founded by a woman called Diane Dike and is the Cryoglobulinemia Vasculitis Organization. I then met a woman named Rochelle! Both of these women had cryo like me. My joke of ,”Mystery Diagnosis,” came back as I saw Diane had been on the show as ,”The Woman Whose Legs Turned Black.” But most of all, even though there weren’t a lot of members at that time, there were some people who had Cryoglobulinemia like me!
I was welcomed warmly and told them some of what I could about myself since I was a newbie to my disorder. I read as much about the others as I could. I noticed that we shared the same blood disease, but weren’t all just alike. Most everyone had a different underlying disorder and others had many autoimmune diseases. I was ignorant to it all, but soaking up what I could! I was new to my own sickness and knew nothing; so I took advice on what to ask doctors and about keeping warm at all times. How they should handle me and take my blood. Most of all I was no longer alone! Even though we didn’t all physically know each other we grew to become friends and family. We share our ups and downs.
I started taking notes on my rashes and how they may have happened. Snapping pictures everytime to see what differences may occur. I learned I was sensitive to all coldness, which led me to a depression, at first, that I had to pick myself up and fight my way out of. So much I had to change and give up. It seemed as if everything the doctors or others would tell me my body would call them liars as I got worse and worse. More outbreaks, or flare ups as we call them, with more and more physical damage. The photo journal was mostly in case places healed before the doctors could see them, but it never happened. Later I started sharing these! Basically cause I myself couldn’t find many pictures and most of what I did, didn’t look like mine. Of course mine has kept changing. Red rashes to raised bumps, to dark black looking sore places, then open wounds and destroyed blood vessels with dead skin tissue. Along the way many others have joined and we have gained some recognition as our group grows. I have grown so proud of all my new brothers and sisters wanting to do more for and with them, but got sicker. No answers as to why I was progressing faster and faster. My Monoclonal was growing beyond the 1% a year and I was being able to walk far less and less.
Recently I ended up being hospitalized and it was decided we would try to do blood cleaning out as much cryo as we could and putting the cleaner blood back in [plasmapheresis]. This isn’t a permanent fix, but something to slow its movement. There were many open sores on me from my recent flare up that hurt terribly. I looked out my window every day; missing my children painfully. Christmas alone! And I hated that winter had come! I was treated wonderfully, but my heart was heavy. I started to feel sick and was worried the steroids were starting to affect me , as I had been told on many occasions I was allergic. Finally it was time to go home and I just wanted my kids!
I did end up being sick and my check up visit with my family nurse practitioner at the Health Center did not order steroids, but did prescribe antibiotics because he said I now had an infection. The main hospital had forgotten to send the prescription for the steroids they wanted me to take anyway so it was kind of like a God send. Then my cancer doctor also orders none of those meds. And I went from being stuck in a bed barely moving to getting better and better. I prayed everyday as I made my way around on my new walker. A wheelchair for shopping, but still lots of love and hope in my heart. I learned I had to do chemo shots, called Velcade, every four days cause I was now had Multiple Myeloma.
My mother rushed in trying to help, but I knew it was too much for her from her own recent losses and now her own daughter being sick. She did teach us how to take care of me at home so I could heal better. I knew she wanted me to move in with her, but I am too independent and wanted to be in my home with my children!
I prayed even more and now I am still here going strong and was given good news my that my cryo levels had dropped from 6.2 to 0.2. I was so happy and still healing wonderfully. Praying for it to continue and praying for the outside world. I prayed daily; watching on television. People going nuts and doing horrible things! Drugs are overtaking people around my town and other places. People I knew were falling apart. I wanted to scream out and get them to see the healthy beautiful lives they could live while mine was limited. Every chemo shot praying it brings me one step closer to remission.
The say after my last shot and a week after battling the flu, I was hit with another flare up. Two last places healing beautifully and me ready to be able to focus on getting around better on my walker and learn more ways to live around my new life. To be able to drive myself again and do things with my family! I have not let that bring me back down.Still keeping warm and still taking care of myself; I refuse to give up. New places and more pain will just bring more strength and more prayers. I will keep hoping and sharing cause somewhere in the future my medical story may be able to help others. I am a Zebra, unique and different, but yet never alone! I have the greatest strength of Jesus and the love of God.
I am blessed with love and many friends from my C.V.O site that help me along the way as I hope I help them in some form. I will never give up on life! I will always have my family and life long friends giving more prayers. I will keep believing one day that there will be answers and a cure. In numbers we have strength! That can never be lost. For others, I never ever give up and always keep believing.
Published: January 2013
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