Last month I attended the 4th Annual California Run/Walk to Fight Lymphedema & Lymphatic Diseases. I met so many wonderful, beautiful people from our community for the first time in person. One of those special people was Peggy Warny, Photographer, proprietor of Headshots by Peggy. Peggy has won numerous awards for her work and has 29 years of experience in her field.
As fate would have it, I met Peggy through author, Kathleen Lisson. I met Kathleen after doing a blog post review on her book Swollen, Bloated, and Puffy last year. Kathleen’s book is one of my absolute favorites.
Both of them reside in the Southern California area, so it was the perfect opportunity to actually meet. Every time I make connections like this, I feel like the LE world just gets smaller and smaller. We all met at the Walk, and it was just instant chemistry. Minutes after hugging we posed for a group selfie!
One of the unique and amazing things that Peggy does is she promotes Lymphedema Awareness through her You Tube Channel also entitled Headshots by Peggy. From my perspective, this take a lot of guts. It’s one thing to write about it, but to speak to a camera in front of the entire world is just so inspiring to me. I can’t applaud Peggy enough for her efforts on this front. Lymphedema awareness is growing! Whether it’s through books, blogs, Facebook, or YouTube, our community is trying really hard to reach the masses.
During the CA LE&RN Walk, Peggy was kind enough to capture interviews with the following people – William Repicci, President & CEO of the Lymphatic Education & Research Network; Kathleen Lisson, Author Swollen, Bloated, and Puffy; myself; Jay W. Granzow, MD, internationally renowned lymphedema & lipedema surgeon; Dr. David Amron, world renowned lymphedema & lipedema surgeon; and Dr. Emily Iker, Lymphedema Specialist and Director of Lymphedema Center in Santa Monica.
Lastly, she also compiled a video of part of my patient story and Kathy Bates’ speech from the Walk. Feel free to watch both videos.
So why does Peggy advocate so hard for Lymphedema? Read on to learn more about her journey in her own words, which began like so many of us, and includes a very direct insight into the day and life in living with a lymphedema. She’s even a Cellulitis Warrior! After the fight for her life, she took her story to the camera. Take that, Lymphedema!!
“I’ve had secondary Lymphedema for 20 years, and the first 8 years I was undiagnosed.
Secondary Lymphedema can be caused from many things, illness, bug bites, surgery, radiation, and mine was caused by injury.
In the time that I was undiagnosed, I had multiple tests ran, they had me on many things that actually caused it to get worse. I was on diuretics, thyroid medication (even though my thyroid was tested in the normal range).
After going to doctor after doctor and not getting any answers or any relief my left leg was about 3x’s larger then my right. I wore a size 9.5 shoe on my left and a 7.5 shoe on my right. I spent a lot of time in bed, because I was in too much pain to get around with any frequency.
One day I was doing a photo shoot for a Podiatrist, he asked me what was going on with my leg, I told him I didn’t know, I just woke up about eight years ago and my leg was swollen, and it never went down. (As the universe would have it, he had just gotten back from Florida at a convention where he learned about Lymphedema.) he asked me to come in to his clinic and let him check my leg. Diagnosed me with Secondary stage 2 Lymphedema. He explained how serious it was and wrote a referral letter to my primary doctor so he could get me set up with a therapist. All these years I had always thought as soon as they figured out what it was maybe able to fix it. So this was bittersweet, I finally knew what it was, I had a name for it… But was told it was incurable.
My insurance paid for 8- sessions with the occupational therapist. I walked into my first therapy session, she sat me down and explain to me that her job was to teach me how to manage and care for my leg. She taught me how to do Self Manual Lymph Drainage Message, how to do a Multi-layer Compression Wrap. We worked together through these 8 sessions, we were able to bring the swelling down a lot, then she measured me for my 1st garment, we soon realized that I was going to need a custom compression garment. My garment includes a toe cap, the garment itself goes from my left foot all the way up around my abdomen and 3/4 down my right thigh. My therapist looked at me and told me that we made a lot of progress, I had learned everything she could teach me, and I needed to keep up with self-care and I also needed realize that today was the best my leg whatever be. The better I was at self-care the slower it would progress.
I was in compression 22 hours a day every day. My day consisted of me waking up taking off the MLCB that I slept in, showering, doing a self manual lymphatic drainage massage, then putting on my garment… then washing and rolling all of my short stretch bandages, cotton and foam, getting them ready for that evening. At night, I took off my garment and did another self manual lymphatic drainage massage, then wrapped (MLCB). I spent about 4 hours a day, everyday in leg care and washing bandages and garments.
Then I got my first cellulitis infection. Over the next few years I had a total of 16 cellulitis infections, 13 of them in a 2 year span.
My last cellulitis infection almost killed me, I had been on so many strong antibiotics in such a short time that not only did I have severe liver issues, but I got C-Diff… the antibiotics had killed the good along with the bad and left me very sick and unable to digest any food…
At this point again, the universe had my back, a fellow photographer acquaintance of mine just happened to be a holistic doctor. We were supposed to do a shoot that weekend but I cancelled, as I was so sick I couldn’t hardly walk across the room, and I had refused hospitalization, fully believing I would be dead in a matter of weeks. Anyway, to shorten very long story, he taught me that our bodies are amazing machines and if we give them what they need they want to heal themselves. So, clearly I am still here, it was not an easy road, but it has been a road of healing, a road I am still on. But in the first 3 months I had lost 84lbs, my leg was smaller then it had been in years, in 6 months I was off of all of my prescriptions (I was taking over 6 different pills – for the pain, for sleep, for the side effects these caused and then for the stomach problems from those pills)
I am not cured, I still have Lymphedema, but- Lymphadena does NOT have me! I wear a compression garment everyday but do not sleep in compression. I eat very very clean and put my over all health at a very high priority.”
You can also watch her tell her story at – Portraits By Peggy: Lymphedema My Story.
How to Follow Peggy
Thank you, Peggy, for sharing your story with us! It was such a pleasure meeting you in person and so glad to call you my friend. Blog header photo credit: Headshots By Peggy©
For more on Peggy, here is how to follow her: