Ending Cryoglobulinemia Confusion

Cryo Confused

I can think of no other experience that brought more confusion into my life than being diagnosed with Cryoglobulinemia. The more questions I asked about my disease, the more questions I found, and very few answers. I wanted to know what to expect and how to be proactive in maintaining my health. Of course I also, hoped for a cure. I had and still have many unexplained symptoms that could be connected to Cryoglobulinemia but none of my doctors were or are willing to make that leap. In fact, I generally have to explain my condition to health care workers and hope I don’t insult their egos in the process. My dream is to find a doctor that knows more than I do about Cryoglobulinemia. I am determined not to give up on that dream.

It’s always important to be a proactive patient and know as much as possible about one’s own body and conditions. In the case of Cryoglobulinemia it is imperative to survival to self-educate. Accomplishing that is not an easy task. There is more information online than there was when I was diagnosed ten years ago but much of it is repetitive and shallow. Practical advice for living with this disease is mostly, unknown to my doctors, at present, and there is little information written about life with Cryoglobulinemia. I know no one else in my community with the disease and there are no local support groups. I remember how overwhelmed and alone I felt being saddled with such a scary diagnosis and unable to find any real answers. The pictures I found on Google of black fingers and toes were downright frightening and I was terrified wondering if that could happen to me. The only advice given me was to stay warm but there were no explanations of what that means for a Cryoglobulinemic.

I am a persistent person driven by a need to understand and some relief from the confusion came when I found an online support group and connected with other Cryoglobulinemics. Fellow sufferers willing to share their experiences became a life-line for me. This is where I learned what the type of Cryoglobulinemia I have could do to my body and what steps I could take to prevent some of the damage. It is the place where I found practical advice on how to live with cryo from day-to-day. I also, found validation and emotional support that makes the burden of my disease easier to bear. I have witnessed how our stories have made an impact (though sometimes it still seems inadequate) on what is known about this disease and the healthcare system’s awareness about Cyroglobulinemia. Patients coming together do make a difference even when we have to join hands around the globe in order to find a few hundred of us. Together we can find better answers and make a difference in the lives of one another. We can bring an end to much of the confusion that comes with the diagnosis of Cryoglobulinemia.

If you are a newly diagnosed Cryoglobulinemic or if you’ve been diagnosed for some time and still feel confused about your disease, the Alliance for Cryoglobulinemia website is the best place to be. The information here is good information from articles, to treatments, to finding doctors, to patient stories and practical advice. Good information and connecting with other patients through a support group goes a long way to lifting the cloud of confusion and empowering Cryoglobulinemics to survive and even thrive.

Validation: Alliance for Cryo Secret Support Group

secret alliance

Validation is Strength

I am a shy person. When faced with a challenge knowing ‘why’ makes it easier to meet that challenge even if the ‘why’ doesn’t come with a solution. When I was diagnosed with Cryoglobulinemia, that diagnosis became an exception to my rule and left me with a million more unanswered ‘whys’ and no solutions to my many health issues.  The label Cryoglobulinemia came with only one warning: Stay Warm!  My doctor also, told me that cryo had the potential to cause harm in every system of my body and to every organ but he had no idea if it was the underlying cause of my many mysterious health issues or my constant pain. My new diagnosis left me in a state of unknowing fear and dissociation as to why I felt so bad. Even the warning to stay warm was not enough information because staying warm with Cryoglobulinemia is very different from the average idea of staying warm. I was left on my own to become proactive in understanding my rare disease and learning how to take care of myself. Over ten years later, I am still pretty much on my own and still searching for a doctor willing to learn about Cryoglobulinemia.

I have sometimes been criticized for my insatiable quest after the ‘whys’ in life but if it weren’t for that desire, I know I wouldn’t be doing as well as I am and I quite possibly, wouldn’t be alive. Knowledge is power and understanding Cryoglobulinemia is essential for survival. Being frustrated by my doctor’s lack of knowledge sent me digging for information on my own and I soon found that there was very little good information to be found. What I did find was a repeat of basically, three paragraphs that gave me little to no insight into whether my signs and symptoms were related to Cryoglobulinemia or not. The help and information I needed came when I found an online support group and began comparing notes with fellow Cryoglobulinemia sufferers. I met Eileen Propp and she became not only, a source of understanding and emotional support but she gave me the information I needed to associate my symptoms with my autoimmune disease and learn how to be proactive in caring for myself. Others in that group also offered me life-improving insights and the mental/emotional relief that comes with greater understanding. Many years later, Eileen and the members of Alliance for Cryoglobulinemia Secret Support Group members remain as my main source for the information I need to understand my disease. Even now as an un-wanting veteran of Cryoglobulinemia, I would be lost without the strength of validation that I can find only in my fellow Cryoglobulinemia fighters. It isn’t easy to share personal health struggles and it should never be demanded of anyone to do so but I’m very grateful for all who do choose to share. Validation is a sacrificial gift and to all those who have sacrificed to reveal their personal stories, daily struggle with Cryoglobulinemia, I want to say thank you for giving of yourself. You are my heroes and I am forever grateful. In you, I have found some answers to why but mostly, I find the support I need to continue to hope and fight to overcome. There is a great power to be found in the gift of validation.