This is the first entry of a blog entitled Our Lipedema Stories. Nearly three years ago, I created a website entitled bigfatlegs.com to communicate with other lipedema sufferers. The site has grown from a few hundred hits a month to nearly 8,000 hits a month. Every week a person contacts me desperate to find information and medical help for herself or her loved ones.
I have been thinking lately that we need to have a blog page. There are so many things we sufferers know about out illness or we would know if we compared notes. When I talk to other lipedema women, I find in our shared horrifying reality much commonality. Number one without exception: we have very few medical professionals who know about lipedema and a lot more who refuse to learn. I would like to share my most recent experience with you regarding that dangerous lack medical of knowledge.
About eight years ago, I was getting into a bathtub and noticed that my feet up to about mid-calf were red and stayed red. My heart lurched. I had noticed this symptom before but always after a shower so I blamed it on shower heat. Through the past eight years, this condition has remained unchanged–though the red socks appear and disappear at random.
Fast forward to yesterday evening. I am a pastor in upstate New York. Our church shares a common meal every Wednesday night. One of the guys came up to me after dinner and said, “Remember Tonya? She died this morning. I don’t know what could have killed her. When I dated her she was healthy except that her legs were red up to about her calf.”
Of course, I knew Tonya. She was heavy, ostricized, and frustrated. “What happened, Dennis?”
“Well, she went to the ER four times last night. Her left leg was swelling and getting a rash. Her temperature climbed too. Three times the ER sent her home. The fourth time they kept her. She died this morning.”
Immediately I knew that she had died from sepsis. Lipedema sufferers must be aware of the possibility of infection in their legs. This emergency situation is comparable to a diabetic going into insulin shock. The only difference? ER staff are trained to recognize insulin shock; they are not even psychologically trained to provide medical care for lipedema women. So, Tonya was sent home. How many times had she sought medical attention, complaining of pain all over her body? How many times had she been tested and nothing was found to warrant her pain? How many times did a doctor say: “You have fibromyalgia.”
I went home last night and instructed my husband and daughter. ” If these symptoms occur, explain to the doctors that I have cellulitis. Fight for me.”
This morning I received a call from the funeral home. The family requested that I do Tonya’s funeral. She will be the second lipedema sufferer I have seen die from lipedema complications this year. Tonya was thirty-two years old but she looked much older as if she had born the weight of shame and rejection all of her life. Go figger!
So my question to you is this: are those red socks we get common to all of us? Do we add this to our list of symptoms?
We are uniting at last, Maggie
Our Lipedema Stories Blog 