*Story and Artwork by R.Land
In 2013 I began my adventure with Cryoglobulinemia. In late summer I had the pleasure of having Shingles for the first (and hopefully the last) time. I knew immediately what it was, the itchy painful red blisters forming a band around my mid-section. I was fortunate that we caught it early and I was back to work practically the next day. Then the ‘real’ fun began.
I started noticing a wheezing when I walked from my parking spot to the door at work. This wheezing didn’t happen all the time, but it did get noticeably worse when the weather changed. I also noticed my lower legs and feet were swelling. I tried to keep them elevated, but at work ‘elevated’ meant a couple inches off the ground. I went in for a full work up on my heart since heart disease runs on my Dad’s side of the family. Everything came out normal, nothing wrong with me. And then the weather changed.
In November 2013 the temperature here plummeted and I started to notice when I was outside my muscles would cramp up. It got so bad; I had charley horses in almost every muscle in my body conceivable! I began to watch for warning signs and triggers & as a lark I decided to bring it to my doctor’s attention at my next appointment in January 2014. I also began to experience a deep pain in my right abdomen. Just a twinge at first, but soon it was a deep & nagging pain that woke me up at night and doubled me over during the day.
In February 2014 I heard the word Cryoglobulinemia for the first time. I was also fighting dizziness, night sweats, extreme fatigue, amped up pain in every single joint, sleeplessness & brain fog in addition to the wheezing and edema in my legs that just wouldn’t go away. My doctor then tested me for Hepatitis C which is the number one cause of Cryo, thankfully it came back negative.
If 2013 began my adventure with Cryo, 2014 began my adventure with specialists; some good, some bad, some indifferent and worse. I added Sjogrens Syndrome to the list of autoimmune diseases which already included Fibromyalgia. I tested negative for Cryo another 4 times that year which seemed to inform some doctors that the first test was a fluke. But in late summer 2014 I tested positive once again for Cryo which put that uncertainty to rest. I had a bone marrow biopsy to see if the source of the Cryo was cancer related. It was not. Then in one of the numerous CT scans that year they found a dense mass on my left kidney. Funny, since the pain in my abdomen was always on the right! A kidney biopsy in December 2014 ruled out cancer yet again.
I have to believe that 2015 will be a pivotal year. My family and I will mark the 10 year anniversary of my beautiful sister’s death. She successfully fought 2 rounds of breast cancer and beat Hepatitis C into remission before she became terminally ill with something called ANCA-Positive Vasculitis. I remembered being so frustrated because the doctors at the time didn’t know that much about the disease. I read every scrap of literature on Vasculitis I could lay my hands on, and then bringing those same articles to her doctors. Her death taught me something valuable; Doctors are real people and they don’t know everything so be patient. We all have the capacity to learn.