These bandages are a magnet. On November 3, 2017, I experienced one of the most unforgettable encounters with a fellow LE patient that I have ever had in person. I shouldn’t say patient. Fellow warrior in this fight to take back our lives and race for a cure. The more encounters I have in the community, the more I realize that everyone is in a desperate search. Whether it’s for more information, a doctor, a therapist, treatment, or maybe even just a little compassion and respect. When you finally meet someone that understands, you sort of just have that moment where a bunch of words can transmit without saying anything at all.
Feet Wrapped in Plastic Bags
In Houston, TX it can get very hot even late into December. My car was 97 F when I drove to my CDT appointment on that day. It was just too hot to wear loose yoga pants, so I wore shorts.
On my way out of the lobby of the rehabilitation hospital, I saw a woman who was in a maxi skirt and wrapped on both legs too. I stopped short.
She had no shoes.
Nothing stabs me in the heart more than seeing someone who cannot wear shoes, because I was that person in 2014. My Dad was that person who could not find a shoe for his left foot. If you are reading this, maybe you have been there too.
That pavement was scorching HOT. It had to be. The sun was only higher in the sky in the afternoon when I was leaving my appointment.
She had plastic bags wrapped around her feet.
My first thought was cellulitis risk if there was a tear. Her legs must have been very advanced, but I could tell she had lipedema and lymphedema. The telltale pear shaped body and adipose tissue in her arms. As I approached her, I stopped and offered help as she got out of her van. I asked if she had LE too. Her answer stunned me.
She said “Yes, I have it, and I know it would be improved if I wasn’t so fat.”
My heart broke.
It was as if she anticipated I would say that. Instead I asked, “Do you have Lipedema too?” In an instant her face and demeanor completely changed. She was surprised I knew. She said she did and that she had an open wound that was being treated on the 3rd floor.
Not Your Fault
I placed my hand very gently on her arm, and I said “Lipo-Le is genetic. It’s not your fault you’re large. You have an illness and just need the correct treatment protocol from the right doctor and therapist.” She locked eyes with me and began to tear up. Then abruptly, but wordlessly, she hugged me very tightly for what seemed like a very long time. Her husband seemed impatient to get going to their appointment, so she turned quickly and went in.
I never saw her again.
Week after week I hung around that hospital hallway and lobby while I finished my own treatment. When I attempted to ask at the Wound Center front desk, they said they could not break HIPAA. I was so angry. I wanted to tell her so many things like about The Lipedema Project USA and the Fat Disorders Research Society. I wanted to buy her post-op shoes. Maybe get some items donated to her from my online support group. The encounter was just too short. I learned my lesson that day. Always carry contact cards.
Lipedema Treatment Guide
That woman and many dear friends I have in my groups were on my mind for the past week. If I ever see that woman again in the future, I’m giving her this book I just read. As I read the chapters, it described my encounter with her so succinctly. I felt like Kathleen may have witnessed it personally like a fly on the wall.
The book is called The Lipedema Treatment Guide – A Certified Lymphedema Therapist’s Advice for her clients with Lipedema by Kathleen Lisson, CMT, CLT. The information I was prepared to give her was just a meager start. The Lipedema Treatment Guide contains links to all kinds of resources. Once again I am blown away by how much research packed information is condensed in it and how much Kathleen is able to fit in such a small book! So easy to read and compact. Also, check out the website.
Wait. What? Lipedema? Pump the brakes, V. What are you doing reading a book about lipedema? You don’t have lipedema.
Well, if I’ve joined a fight to beat lymphatic disease, then I need to know more about other diseases outside of my own lymphedema. We all should! Many of our group members have what is known as Lipo-LE. This is a situation where lipedema is present first and through usually years of misdiagnosis and no treatment, secondary lymphedema develops. In fact, Kathleen directly addresses tips on how to self advocate for treatment.
Kathleen Lisson is Board Certified in Therapeutic Massage and Bodywork and is a Certified Lymphedema Therapist. She owns Solace Massage and Mindfulness, has taught classes at IPSB Massage College in San Diego and is the author of “Swollen, Bloated, and Puffy, a Manual Lymphatic Drainage Therapist’s Guide to Reducing Swelling in the Face and Body. See my review here. She spoke at the 2018 Fat Disorders Resource Society conference and completed the Lymphedema Therapy Advanced and Review class at the Foeldi Clinic in Hinterzarten, Germany.
Kathleen and I first met online in September 2017 when I reviewed her first book. Then in June 2018 I had the unique and amazing opportunity to meet her in person at the Lymphatic Education & Research Network CA Walk to Fight Lymphedema & Lymphatic Disease in Santa Monica, CA. We connected instantly like old friends.
Back to the book. You won’t be disappointed. I learned so much from it, and I’ll be using its content as the basis for topics in my online support groups. All the buzzwords you hear in groups like foam rollers, fascia, quadrivas, taping, cupping, meditation, etc are all covered with research links to back them up.
It’s presented in an easy format with well organized chapters and even a “Quick Start Reference Page” which lists topics such as–
- “How do I dry brush?”
- “Tips on writing my letter of medical necessity for surgery”
- “How do I talk to my doctor?”
No spoiler alerts here but I’m adding this book to my Lymphedema Toolbox. I encourage you to do the same whether you have lipedema or not. If we complain that nobody knows anything about lymphedema, I guarantee you they know even less about lipedema. We have to stop, turn around, and help the other members in our community with lymphatic disease spread the word.
This is why I have invited, Kathleen Lisson, to speak via Facebook Live in my main group called the Official Lymphie Strong Inspiration Group. She will answer Q&A on the the Lipedema Treatment Guide in our scheduled event on Dec 11, 2018 at 6 PM PST. You must answer the questionnaire to get into the group on Facebook. Questions for Kathleen must be submitted before Dec 9, 2018 on the event thread. Don’t miss this great opportunity to hear her firsthand.
Wishing you great lymphatic health,