Lipodema Legs - my story later, and Denise Bennett's perspective, first.
TO QUOTE DENISE BENNETT:
By Denise Bennett
Nine years ago I had a total left knee replacement. I was 49 years old. It was one of the best decisions of my life. Here’s the reason why. Before my knee replacement, I thought about my knee all the time, and I do mean all the time. If I was awake, I was thinking about my knee. What time today would it become painful? Would those heels be comfortable to walk in all day? Would my day require me to walk further than would be comfortable? Could I ride my shopping cart across the grocery store parking lot to my car? Yes, I considered that.
When I first consulted with an orthopedic surgeon about my knee, he told me, “when your knee is making all of the decisions for you, you’ll let me know you are ready for surgery.” He was right. Finally, two years later, my knee was making all my decisions for me as to what I could and couldn’t do, what activities I could participate in, and even what shoes I could wear… and I love shoes.
Once I had the knee replacement, and was fully recovered, I realized one day that I no longer thought about my knee. I was whole again.
Since shortly after puberty, I have been thinking about my legs. My first recollections of being self-conscious of them came in high school gym class. We had to wear those totally unflattering one-piece jumpers, and believe me, there was no way to hide your legs in those things. I would strategically place myself in the back row during our exercise classes, hoping no one would notice that my legs were thick, and bumpy, my knees were bulging, and my arms were heavy.
As I got older, my hemline got longer, and finally I began to wear only long pants, never shorts, and stopped swimming in public pools. Hiding my legs was a daily part of my routine, not a part of my thoughts really, as I was living on autopilot. And then I learned about Lipedema. Legs suddenly became a part of my conscious thoughts. My daily thoughts were about my legs. When would I get a diagnosis? When would I find out if I could have surgery? Was it okay for me to spend money on getting my liposuction surgery? Then there was the countdown to my surgery dates. Legs. Legs. Legs.
After my surgeries, all I could think about was how good my legs felt. How small they looked. How they looked like someone else’s legs. How they were more swollen today. How they were skinny today. Did they look lumpy? Do they look ok? Is the Lipedema coming back? Is my compression garment tight enough? Do these jeans make my legs look thinner? Thicker? Longer? Legs. Legs. Legs.
So my answer to the questions, “Will I ever stop thinking about my legs?” is this. Perhaps not. I have been worried about them, I have hated them, for far too many years to be able to imagine that I will stop thinking about them. What I am hoping for is this. That I will be more grateful to them. More appreciative of them. Thank them for carrying a heavy burden for so many years. Caress them for holding me up, never failing me, allowing me to have the rich, wonderful life that I have lived. They are not perfect. They will never be perfect.
Here is my goal. I want to change “thinking” to “thanking”. Will I ever stop thanking my legs? No. Thank you, beautiful, healthy, sturdy, wonderful legs. Smile.
These are my legs. They have served me well for the past 57 years, and I am grateful. Despite that, I am happy to be on a journey that allows me to say goodbye to them.. at least to the way they look and the pain and shame they bring. In March 2017 I was diagnosed with lipedema, a genetic fat disorder that causes my legs to accumulate painful fat that it out of proportion with the rest of my body and causes complications as it progresses. I am having two surgeries in 45 and 48 days to get rid of it! I am thrilled, excited, and scared. Despite success in losing 80 lbs over the last 18 months, my legs remain the same. They do not respond to diet or exercise.
This disease is often misdiagnosed or undiagnosed, as was mine until this year. I have searched for answers for 25 years. No one knew what was wrong. Vascular specialists, general practitioners, dermatologists, endocrinologists, weight loss specialists… no one had answers as to why my legs were disproportionate, painful, bruised easily, impacted my gait, and the countless other symptoms I experienced. In March, finally a diagnosis of lipedema gave me the peace I needed to know that I was not alone! Since puberty, my legs had been the enemy, and now I understood why, and have a path to a solution.
After much self research, explaining to physicians who knew nothing about this disease, getting surgical approval, selecting a specialist in Atlanta, Georgia, and making lifestyle changes and getting conservative treatments, I am scheduled for surgery on November 7 and 10, 2017. I am writing this blog for those of you who are interested in following my journey, and so that you will learn more about this disorder that many women have and few know about. Thank you for your interest as I begin to share my story… a story that began more than 40 years ago!
MY BYRD LEGS DON'T FLOAT
As I headed toward surgery in Fall, 2017 had a lot of expectations; some were far fetched, but most were realistic. Recovery has had some minor surprises, such as the changes in leg shape from day to day, the surprising amount of time I spend looking at them and the deeply emotional aspect of the changes taking place in my body. If you’ve had surgery, you know what I’m talking about.
I am a swimmer. I have always been a swimmer. Athletically, once I started gaining wait after puberty, it was the activity that I was best at, and loved. We had a pool growing up, and I was practically a fish.
One year, our family was on a camping vacation in Ontario at Rushing River Provencial Park. I was around 11 years old. My dad was a good swimmer, and it was one of the few, fun activities that we did together when I was young girl. Rushing River had a huge boulder in the middle of the river, outside of the appropriately marked off swimming area. This boulder was 12 feet by 15 feet, and about 50 yards out. My two younger brothers, my dad and I, were swimming in the roped off area. My dad let me swim out with him to the boulder, making sure my brothers stayed behind the ropes. It was a huge moment for me, and one I often recall, and have heard my dad brag about. All this really to say that I have always been comfortable and confident in the water.
We have a pool at our home here in Texas. By early May, I was in. I had not been swimming since before my surgeries in November and March. After swimming laps one day, I decided to just relax, and float around the pool basking in the coolness of the water and the warmth of the Sun. I stretched out, relaxed my body and waited for my legs to float to the top.
I tried again.
Nope. Legs keep sinking to about a 45 degree angle.
“Okay,” I thought. “This must have something to do with the loss of calf fat.”
Interesting. Hadn’t even considered this effect.
So, I tried sitting and laying in the bottom of the pool, in the deep end. Haven’t even tried doing this in decades.
Now, not a problem.
Unanticipated change after surgery: I am not a flotation device. I am not a bobber.
Byrd Legs Don’t Float!
This time, Donna writes about her arms:
Touch up surgery:
Inheritance - THE GENETIC FACTOR
Touch up surgery:
Inheritance - THE GENETIC FACTOR
LIPEDEMA: MY JOURNEY
My story is very similar to the one above. So much that I share Donna's inspiration and journey first.
Here are just a few pictures that show what my legs were like, even in earlier years,
THIS IS M,E BEFORE I KNEW ABOUT LIPEDEMA AND HAD HEARD FROM MY MOM THAT HER LEGS, HER MO'M'S LEGS AND HER AUNT'S LEGS WERE ALL LIKE THIS: IT RAN IN THE FAMILY". It didn't give me hope, just resignation.
- -Even in my thirties, here; my legs are kinda thin but tender an stumpy legs. .
Knee surgery - I had knee surgery, too. I got a full right knee replacement in 2014.
My right knee, which was entirely bone-on-bone and slipping off towards the outside of my leg - causing pain clear from hip to ankle needed replacement. I twas not a great result for me right away. I did not recover well, due to pulmonary embolisms and C-Diff infection. They expected me to die. Clearly - I did not. Even then, I knew I had Lipedema, but had no answers or solutions.
When it comes to Lipedema, I knew I had it, and I knew a little about it, and I tried many options, to no avail. Dead ends and people not believing me, (including my own doctor -who would not record that diagnosis - but was willing to call it Lymphedema). i tried acupressure and acupuncture and gym memberships and trainers and hypnosis and cycling; I tried so many ways to do something - but all that happened was my legs got larger. My legs got larger.
In Jan, 2017, after a significant amount of research and a trip to a ridiculously expensive doctor, a Lipedema surgeon. (who would NOT bill insurance) in Beverly Hills, CA , I was mostly financially so discouraged, and figured I would have to give up. Their was only One-Good-Thing that happened about flying to LA - the doctor referred me to a Facebook Lipedema page; it was rife with info and I found other patients-like me. Long-story short: I found a surgeon in Seattle, WA. For me, that is only a 3 hour drive. I went in February 2018 (and expected a denial from my UHC insurance).
To my surprise -there was no denial, but an approval and a surgery date. This physician: (Dr. Peter Neligan), suggested one leg at a time surgeries - 3 months apart, for maximum recovery. I scheduled my first surgery on April 3, 2018 - my age, 64. Here is an initial surgery pic.
When I woke, after being wheeled out of surgery, I wept uncontrollably; I pulled the covers back and looked at this wrapped leg with hysterical tears of joy, I wept. The doc removed 6.2 L. I had Ortho-Static Hypo-Tension (I could not get my BP up to normal numbers.) They kept me overnight and then released me to my cousin the next day. I stayed with her for ten days, before I was released to return home after the first post op.
Even though - while still recuperating at my cousin's, the right size is still large - I immediately had an ankle! The non-surgery leg was so gross. I emotionally struggled with so much change. DOCUMENTING, WITH PICTURES, AS IT GOES, HAS BEEN HELPFUL.
My son took me biking only twenty days after surgery. It is a big step to be able to try - to start to return to normal activity! Look at how different it is from the first surgery and NO surgery yet.
This is my BAGGY PANT LEG Pic. I had to start pegging my clothes (only one pant leg at a time - initially). Why get a WHOLE new wardrobe?
Mother's Day. May dress. one leg - double (or one leg half) it is a matter of perspective.
The above pictures shows a great progressions picture, two weeks and eight week apart!
Pegged those jeans - Yes, weight loss is happening!
Had to take pix. Last day of being lippy legged! June 24, 2018. Surgery 6/25/18
When I had the second surgery (June 24), again, IAgain, this second time, I had Ortho-Static Hypo-Tension (I could not get my BP up to normal numbers.) They kept me overnight, this time (unlike most of my life) I vomited several times with the Hypotension - nausea. The next day (as before), I was released to my cousin. I stayed with her for seven days, before being released to return home to have my post op appointment with my PCP.
Here are my surgery legs, bruised, while still in Seattle. Thighs! Ah, they are so much slower to heal than calves.
Right after surgery, comparing two new legs. 6/24 looks so different from 6/25! ANKLES!
Sitting around with my legs propped, feels indulgent and too sedentary, but it is OH SO NECESSARY!
These are the boots that I WOULD NEVER HAVE BEEN ABLE TO WEAR; I ordered them online, and now that I have ankles and skinnier legs - well--- hot damn!
I took this before going to the pool in Albuqurque:
It was a heat-challenge to be in compression with temps in the mid 90s to 110, in New Mexico, It was only bearable indoors. In the following pics, I was over heating..
Me on vacation - Santa Fe. Compression sox, but lil legs. This is only three weeks post op!
Still, Santa Fe; the Airbnb hostess asked if I didn't mind her observation - left leg still looks larger.
YUP! It was only three weeks post-op. It takes time! I wasn't at ALL offended,
More - Santa Fe and/or Albuquerqure; , dressed for a fancy banquet.
My arms have Lipedema and the both- arm surgery will be Sept, 24.
I have to do a lot of zoom (on the pic) to make the arms not be profound.
There ya go!
I like this pic of me.
This pair of pj bottoms have not been worn for about 15 years, (iIn the hopes of skinny) - I never thought surgery would be the answer! Thighs fit now AND the calves would not fit into these pjs before at all. I even had to peg them.
Boots I used to wear - LOOK AT THE LEG ROOM!
Bought a wrist-Fitbit. Getting out walking now.
Propped feet, little ankles half calf leggings.
The boots and dress and leggings look.
WOW. A whole arm fits in their with the leg. These boots were too tight, before surgery
- and now? LOOSE!
These are "I went shopping and I am down three pants sizes pics!"
This is a September 5 picture. The slippers are worn with compression (footed) sox and the second picture shows that more up close. These legs. These legs look normal. Will I ever focus on anything else? As mentioned above (from Denise Bennett), I think about them a lot and look at them in a mirror more than once daily.) What was once a cause of shame - is now just something looking normal.) A lovely benefit, (and I have always BEEN a cautious eater.) is weight loss. Since before the first surgery, as of 9/6/18, I have lost 37 lbs.)
A few other progress pix:
Boots? Are you kidding me? NOPE!
These pix show the unflattering arms.
This is my three month Post op pic and my pre-op for the arm surgery on Sept. 24. Huge Huge Huge gown. I am awaiting the doc to approve good healing and on to the arms surgery.
I have now had my third and last surgery of 2018 - the arms.
Here are a series of pics in that category. These are arms pics that are before surgery:
This next pic is Aug 2018 Legs done and arms still "lippy".
In the AFTER pictures (below), You'll see the difference from this next gray sweater picture:
- Pre surgery - the morning of 800 ccs removed from each. Day of Admission -
Doc was worried still have Ortho-Static Hypo-Tension, so - it was an automatic overnight stay.
Ironically, this time, I did not need it. No worries on the financial front, I had already met my insurance "Out of Pocket" max, somewhere in the second surgery - so ALL THIS - covered at 100%.
Here is two days later, when the bandages are removed. My cousin thinks (going thru this), I am Wonder Woman - thus the mask.
Here is a comparison pic, after I returned to Oregon.
These are 10 days post - op and release to go home pix. "Big-Ol-Bruises!"
The arms extended pic has to be done in halves. Weird looking, I know - this is 10/21. Almost an exact month of recovery.
This is a significant comparison picture in the same sweater and what my arms look like in Dec, 2018 - and my legs. I am feeling great and the compression is almost never worn.
I feel great and am looking great! I am back to a gym membership, and I go to swim aerobics one-two times a week.
I had always heard it was good for me, but I was too self-body-shaming to be in a swimsuit.