I have Lipedema, Lymphadema, Dercum’s disease, vertigo (bbpv), peripheral neuropathy, fibromyalgia, and to add to the mix a 55-year history of kidney stones. I am also a 3-time survivor of cancer. I am 78 years old at this writing.
A BRIEF HISTORY:
I was diagnosed with the fat disorders and vertigo and fibromyalgia at the Mayo Clinic in 2013 at the age of 70 when I went in for severe vertigo. I had never heard of the fat disorders and was moved to tears when I was told that my weight was not my fault. I struggled, for 6 long years after, my Mayo diagnosis to find help in the form of therapy, surgery, wrapping, acquiring a pump, and finding a Doctor who even knew what fat disorders were.
In the summer of 2016, I broke my right femur into 16 pieces. I spent 3.5 months in rehab after a complicated surgery. I also had kidney problems and suffered septicemia during my stay. I spent much of my recovery time searching for help for the fat disorders.
My diagnosis was confirmed by Dr. Karen Herbst in the summer of 2018. I began intensive research. The fact that I was relieved from responsibility for my weight gave me enormous energy to find the solution because now I knew there was one.
My own advocacy
I had to become my own advocate. I was losing confidence in my own strengths and abilities. The fall and broken leg made me overly concerned about falling. In February of 2021, I was diagnosed with atrial fibrillation and put on blood thinners. In 2021 I asked to be retested and proved that it was stress and I did not have a problem.
In March 2021 I took myself off all meds cold turkey. My blood pressure went down 40 points and is holding. I have finally found a Doctor who is willing to learn about Lipedema, lymphedema, and lymphatic disorders. He led me to a Gunther Klose-trained manual lymph drainage (MLD) therapist. I have watched hours of youtube videos, on the research and treatments that are available.
I do not recommend or even suggest that you take the steps I have taken because this is not a blog post giving medical advice. You must work with your Dr. for your specific needs. I suggest you get a free download from the web of the Standard of Care for Lipedema https://pubmed.ncbi.nlm.nih.gov/34049453/ and ask your Dr. to read it. It was published in May of 2021. Over 20 of the world’s leading experts worked to produce this document.
I’m happily moving forward one day at a time. I’m documenting my experience for my own benefit as much as anything. This has been too many years of mystery for me. I want a record of my progress as I battle the ‘Demas.’ I hope you will find it encouraging and interesting. There are countless ‘attacks’ that come against us in our lives. Our health issues are one place where we can support and encourage one another.