I recently corresponded with someone through Lymphedema Community who was newly diagnosed with lymphedema. She needed answers to some substantial questions about her new diagnosis such as what activities are encouraged/discouraged, what treatments are available, what is the prognosis for those with lymphedema, could she have children, and would she pass lymphedema onto her children. Corresponding with her made me remember the anxiety I experienced upon learning about my condition, as well as the desperation for answers and hope. I remember being overwhelmed with anger, fear, resentment, and panic. What would my life be like from now on? What could I hope for? Would I be able to live a full life? I felt alone, ashamed and afraid. I remember trying to search online for others who succeeded in living a happy, full and active life, but most of what I found were patients who lost hope and became confined to their homes, feeling depressed and alone. I hate remembering the early days of my diagnosis because they were among the darkest of my life.
As I write my posts, I imagine myself talking to those who are searching for answers, who have just been diagnosed, or who want more from their life. I want to create a positive and motivating resource to which they can turn. However, please don’t think that I consider myself the perfect lymphedema patient or an expert on lymphedema. Not at all. I still have a lot to learn and apply when it comes to maintaining my lymphedema, and I also need to gain more education about my condition and get current with all the research that has been done. What I mostly want to offer in my blog is hope that your life can be about more than lymphedema.
Some of the topics that I will discuss these coming weeks will deal with my own personal experience with pregnancy, weight loss and exercise, choosing and wearing my compression garments, infections, and overcoming anxiety and depression. Again, I do not consider myself an expert on any of these topics and I will always defer to health care professionals when it comes to how to care for your lymphedema.
Speaking of experts, the following is a list of resources that I turn to when I have questions:
- National Lymphedema Network – When I was newly diagnosed I got a lot of my questions answered in the Question Corner on this site. Look for them on facebook as well.
- Lymphedema Blog – This blog has a lot of educational information about how to care for lymphedema. There is also a facebook page call Lymphedema Guru that has good information as well.
- Living Well With Lymphedema – I own this book and found it very resourceful as I was beginning to try to better understand lymphedema and how to live a fuller life with my condition.
What other questions did you have when you were first diagnosed?
What resources were helpful to you?