Where it all began

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!

Advertisements

Byrd Legs Arriving

I am 7 months post op Liposuction for Lipedema with Dr. Marcia Byrd. I am 58 years old, and had unknowingly lived with Lipedema since puberty. I knew something was wrong, but I didn’t have a name for it.

All that changed a year ago, and I have documented the journey for the last year.

After the two surgeries on my legs, the intermittent swelling sort of masked the initial results. I worried on a daily basis, regardless of the fact that Dr. Byrd and everyone else for that matter, said that the end result takes 12-15 months.

They were right. My legs this morning are at an all time thinnest.

Later this week I will be seeing a vascular/vein specialist that I met at the FDRS conference in Dallas is April. Dr. Byrd recommended that I go for a consultation about my veins 8 months post op. So that’s what I’m doing. I am so happy with my legs so far. Cannot even begin to explain what it feels like to own legs that are not disfigured. They are not perfect, and never will be. There are broken capillaries, some swelling around my knees, a touch up yet to come, and I AM 58 YEARS OLD, so there’s that. But, I wear dresses now, and I look decent in my bathing suit, and my legs don’t ache, and I don’t have mysterious shooting pains in my calves, and I can run and swim underwater without immediately floating to the surface, and I can go shopping on my lunch hour and buy any clothes I want.

Legs this morning.

Life is good… it has always been good. But now, I step a little bit higher.

Surgery isn’t for everyone, and I know that it is not an option for many. If you are on the fence about it, do the research and consider this option. It has been a great choice for me.

Legs a year ago.

And just to keep it real… legs just days after surgery.

And before surgery after 80 lbs weight loss and wearing compression.

Vs. now with compression.

Life changing. Happiness-making. If you have Lipedema, you understand what I am talking about.

I would love to understand why insurance companies can’t see this. Oh, wait. $$$

Keep fighting for coverage. There’s an entire generation standing in line behind us.

Deny. Accept. Tackle. Conquer.

This morning Facebook brought up a picture to remind me of what I was doing 6 years ago. Normally when Facebook does this, I glance at the picture, either say to myself, “oh, I remember that day,” or surprisingly as I have gotten older I say, “wow, I don’t even remember that!”

If you are reading this, and fall into the “older” category you may be chuckling right now.

This morning, however, the photo took me back in time and brought a wave of memories and feelings. The first thought I had was, “my dad is standing.” Something he can no longer do. In this picture, he was just shy of 80 years old, still healthy, no signs yet of what was to come. I went to Tennessee to be with him for Father’s Day and also to begin planning his 80th birthday party scheduled for that September. His wife, Dene, mentioned some troubling symptoms he was experiencing, but I saw no evidence that anything was wrong. I didn’t want to see that he was uncharacteristically quiet, that he seemed to stay closer to Dene and more dependent upon her presence. Looking back, I didn’t want to see that my super strong, fiercely independent, keenly intelligent, delightfully corny-humored father was beginning to be slightly less himself.

But he was.

A few months later, we had his 80th birthday “hoedown” and my once agile, footloose dad, struggled a wee bit during the square dances to follow the caller. I noticed… but dismissed it as age.

I was wrong.

He had Parkinson’s Disease.. but we didn’t know that then. It would be several more years before we would hear those words.

Today he is a mere shadow of his former self, cannot walk, barely can speak, still cracks a joke (one-liner) on occasion, and requires full-time care. Though once nearly 6 feet tall, the last picture I have of him standing next to me, while I held him, he was shorter than me.

It’s been an emotional journey to watch him as his body and mind fail him. Yet, he is still Dad, and his big personality still shines through from time to time. It is hard to watch a person you love fade away.

It is much easier to be in denial.

The second thing I noticed about the picture was me. My legs. My body. Me.

After this picture was taken, I threw out those clothes, because they made me sad. Of course, we all know the clothes didn’t make me sad… my body, the fact that how I looked in my mind’s eye didn’t match the picture is what was making me sad. But throwing out the clothes was the path I chose to deal with it.

I had already been on Weight Watchers at the point this picture was taken, and was feeling better about myself, walking 3 miles on the back country roads each day I was there, and yet, the photo made it undeniable that my efforts were not getting me the results I so desperately wanted.

And so yes, the answer was to throw out the reminder and even though I didn’t decide to give up.. I gave up.

Defeated.

Again.

Denial that something was wrong.

A few years later, I tackled the problem again. Losing over 80 lbs, and doing all within my power to “normalize” my body. Once again, through will, determination, and hard work I had beat my body back into submission.

I could look at pictures of myself and see that I looked better. But not “normal.”

My legs and arms were still “wrong.” I measured them with a tape measure every week. No change. “How is this possible?”, I would ask myself.

I didn’t know about lipedema, so I kept telling myself to lose 20 more lbs and my legs would finally disappear. Nope. My weight was stuck, regardless of how hard I tried.

Denial that something was wrong. Denial that there was an explanation.

Today, after 3 lipo surgeries for lipedema, I am happy with me. When I look at photos of myself now, I see “normal” legs. They still shock me.

Denial protects us, until we are ready to deal with reality. I denied that something was wrong with my body that I could not fix on my own, much like I denied that something was happening to my Dad that I had no ability to stop or fix.

Life lesson. Accept. Tackle. Conquer

Too bad that isn’t an option for my dad. .

My Byrd Legs Don’t Float

As I headed toward surgery in Fall, 2017 I 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.

Didn’t happen.

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!

A pig in a “poke”

Today marks a month since my lipo on abdomen. I am healing. The surgery itself was easy-peasy. The recovery has been a bit tougher than I anticipated. The area from pubis to top of my rib cage was black, swollen, tender and heavy feeling. Compression felt good, but at the same time painful. Irma and I had some good laughs getting me into the compression garment that first post op morning. It was like trying to stuff a full grown pig into a gallon-size ziplock bag! In some portions of the South, a bag or sack is called a poke… thus the title.

I don’t know how we managed to get all THAT in there, but once we did we had ourselves a good belly laugh.

So, a month later all the bruising is gone and hardness is gone. There is still swelling, some redness, and my skin is tender to touch, much like a sunburn would be. But, I feel good and have no pain.

I know everyone would like to see pictures, but I am not ready to do that just yet. I am sharing a picture of me clothed, feeling and looking thinner than I ever remember.

The big surprise for me in this surgery has been the swelling in my calves and thighs. It makes sense, but I wasn’t prepared for that and it freaked me out a bit. I thought the lipedema was coming back! But, as time has moved on, my legs are returning back to my new normal.

Today also marks a year since my diagnosis. What a difference a year can make. The journey has been awesome. As I continue to heal these next 6-12 months, I will pursue a consultation with a vein specialist as Dr. Byrd recommended. My calves still feel “heavy” after walking long distances. She suggested that this could be vein related. I hope so.

All is Calm.. All is Bright

We’ve successfully made it to Georgia. Our campsite is perfect and now we rest, relax and enjoy tonight and tomorrow. Surgery with Dr. Byrd is Wednesday morning and I am so ready. Feeling good. Feeling healthy. I anticipate nothing less than the best.

My legs have had some swelling from 4 days of driving, but that is to be expected at only 4 month’s post op. I wore compression (even double yesterday) to help keep the lymphatics working.

The drive from west Tennessee through Nashville (my college town), down through Chattanooga and into Georgia was beautiful. I love this part of our country, and would love to move here. I am drawn to pine trees, something Texas just doesn’t have to offer.

We stopped and spent some time with my stepmom, Dene. It was so good to see her, talk with her, let her know that I love her. She calls me honey, and my mom used to call me that. I miss that, and so when Dene calls me that, it means a lot. Not because of my mom, but because I know she loves me too. Was also good to see Steve and Stacy, (Dene’s son and daughter in law) and share a few moments with them during this difficult time.

Here’s a quick glimpse of our home for the next 4 or 5 days.

Fighting for our Lives

The other day I had lunch with a friend. She is an activist for people living with lymphedema, whether genetic or related to cancer treatment. She inspired me.She said, “You are part of the Vanguard of what is possible for Lipedema. Your willingness to share your innermost thoughts about your life, experiences, and dreams is so valuable to those who walk this walk with you. You share the amazing discovery that those with growing, painful limbs are not alone. In many ways your journey mimics those with lymphedema.”

My insurance company has denied my insurance claims for the treatment of Lipedema. Even though I have a diagnosis and a letter of medical necessity, they have denied the insurance claims. First they said the treatment was experimental. Then they approved it with a specific physician who added a microsurgical component to the treatment.. a surgical procedure that I felt was unwarranted and potentially harmful. Then they denied it again saying the procedures were cosmetic.

For those of you with Lipedema, you know this process all too well.

I was telling my friend that on some days I just don’t want to invest the energy to fight the insurance. Some women have been fighting for years to get their claims paid. Some succeed, some get partial payment, some get nothing. Some days, I think my time and energy is not worth the appeal process, the aggravation, the stress of it all. I paid for everything up front and now I will just move forward.

Other days I can muster up the energy to fight the insurance industry, not only for myself but for those that stand behind me in line. Perhaps for members of my own extended family, who may or may not share my genetics. And what if treatment in the earlier stages is available to them, when not only was the treatment not available to me, but I couldn’t even get a diagnosis. Even if there had been, would I have been able to afford the surgeries as a young woman?

And so, as I head into my third surgery in 10 days, I have pulled out the paperwork and have begun to write my appeal to Blue Cross Blue Shield. I AM TELLING MY STORY. All the ugliness, all the pain, all the emotional havoc, all the joy of having a diagnosis and the surgeries that have changed and will continue to improve my quality of life. I’m including the photographs that are still difficult for me to look at. I’m ready for battle…for me, for my bloodline, and for you!

I challenge you to do the same. Many voices make change possible.

The next chapter

Well, a month from today I will be back in Roswell, Georgia for my next surgery with Dr. Byrd. Funny how different I feel this time in comparison to 3 months ago. No nerves. No questioning whether or not this will be worth it. No wondering about the recovery. Just a sense of peace that the next step is ready to be taken.

This surgery is number 3 of 3, and will address the lipedema in my abdomen, rib cage area and flanks. Perhaps there will be a touch up later in the Fall, but this is the last procedure scheduled. I am thrilled with the results thus far.

Let me tell you about ten of the changes in me.

1. No more leg pain. No shooting pains. No cramping. No tenderness to touch. No bruising. No swelling to speak of.

2. No indention about 4 inches above my ankles.. indentions that had been there for at least 20 years!

3. No more self-consciousness about my legs/arms not matching the rest of me.

4. No more worrying that one day in the future I would be unable to walk , like what happened to my mom.

5. A new freedom in wearing whatever clothing I feel like wearing, i.e. short dresses, ankle boots, tall boots, leggings, jeans, tailored vs. wide leg pants, sleeves that fit and don’t cut my circulation off.

6. Additional weight loss… down another 20+ pounds.

7. Increased energy, the result, no doubt, from not lugging around heavy legs and arms.

8. Increased confidence, self-esteem, overall happiness.

9. Increased determination to adhere to a low carbohydrate way of eating, as I have become more convinced than ever that sugar is a major INFLAMATORY to the body and contributes not only to my body misdirecting fat, but to overall aches, pains and brain fog.

10. Reduction in self criticism. This is a big one. I have always been critical of myself in every way. Now I find myself being kinder, gentler and more forgiving of myself… which in turn leaves me more forgiving and understanding of others. This is the bonus… I love myself more.

So, lessons learned. Whatever your situation, pursue your dreams, listen to the still, small voice inside of you that is trying to direct you in the right path, and push through your fears.

That is all.

Cruelty and Kindness

I have battled weight for most of my life. Maybe you have too. Shortly after puberty it began, and the viscous cycle of dieting characterized my journey. I had tremendous successes followed by epic failures.

Two years ago, at the age of 56, I decided it had to end. I either had to give up and just be fat or change my relationship with food entirely. I was never a binge eater, never a closet eater, never any “named eating disorder.” I was addicted to carbs. I loved all carbs; the sweet and the savory.

To make a long story short, I went to my doctor and he suggested gastric bypass. That was the day I decided to do whatever was necessary to change the trajectory of my life. It seemed to me that if one needed to completely change their eating habits to HAVE weight loss surgery that for me it just made sense to change my eating habits in order to AVOID having weight loss surgery.

And so I did, successfully dropping more than 80 lbs.

If you have read my blog, you know the rest of the story… my legs and arms did not respond to dietary changes and ultimately I learned that I had lipedema. In November,2017 I had two surgeries on my arms and legs to remove the diseased fat. As a result of those surgeries, not only did the pain and swelling go away, but both my legs and arms no longer look deformed.

Consequently, my physical appearance is basically normal and this is something totally new to me. I no longer have to choose clothing that hides the previously deformed limbs I had for my entire adult life. I cannot explain to you how this feels, how it changes everything. The other day, on my lunch hour, I went shopping. No drama. No frustration. No tears. No self hatred. My arms slipped right into blouses and jackets. My legs easily fit into tailored pants. Dresses that previously I would not have even looked at, fit perfectly and looked so amazing that I got scared that I was delusional, and asked a perfect stranger if I looked okay as I stood in front of a three way mirror that was OUTSIDE of the dressing room in the actual store!

All this to say, I dress differently than I ever have. Dresses, above the knee. Leggings. Tall boots. Jackets and blouses that are loose on my arms and fitted on my torso.. because they are the right size, and not sizes too large to accommodate my arms. As a result, I look different than I previously have.

So what is cruel? The kindness of strangers.

I am 5’9″ tall, and blond. I attract attention just because of those two things. But now I REALLY attract attention. People are more friendly. People let me cut in front of them in lines. People talk to me wherever I go. Doors are opened. I catch people doing the “once over head to toe” thing. The world just seems more engaging and open and kind.

So why is kindness cruel?

Because I never realized until this week that there is an enhanced level of kindness that exists for people who are attractive, or “normal.” While it feels good, I also feel sad. Sad that at 58 years old I am experiencing a kindness that was previously lost to me. And sad to know that my thick legs, thick arms, extra weight and subsequently, way of dressing, had isolated me from a routine kindness that others experience daily, and often don’t realize. I feel sadness for individuals who have deformities that cannot be corrected through a surgical procedure, or don’t have the money to spend out of pocket when the insurance companies don’t recognize your disease and deem the necessary surgery to be cosmetic.

I don’t know, maybe all of this sounds strange, or maybe I am treading into territory that isn’t acceptable to discuss. However, it brought to mind a news story I watched years ago about how people who are attractive get hired for jobs that they are less qualified for. Or how tall men earn more money than short men. How baldness determines attractiveness. Or how people with disabilities are not hired at all because, contrary to the evidence, they may not show up to work and be less dependable.

There are so many areas of discrimination out there.

This week, kindness reminded me of the cruelty that exists by withholding it. I want to remember this, and use it to fuel kindness towards others, by me, in my day to day living.

The thought also occurred to me that everything I just said isn’t true at all. That the kindness has to do with me… that I am more friendly, that I am smiling and more confident and my face is more welcoming… and that all that has really changed is me.

Hmmm.

Moving Forward

It’s been awhile since my last blog post. Been crazy busy with life. In 7 weeks we will make the journey back to Roswell, GA for 3rd surgery with Dr. Byrd. This time, abdomen and flanks. It has been 2 months since my lower legs, arms and thighs surgeries, and I am happy with my results so far; am still healing. I experience some swelling in my legs from time to time, and continue to wear Bioflect Pro compression on both my arms and legs… taking advantage of the cool weather in Texas this time of year. I have no pain in my legs anymore. None. My skin is retracting nicely on my calves, where I had a 4 inch decrease in circumference. Thighs are still a bit jiggly, and I still have some fat pads on the interior portion of my knees that will probably have to be addressed in a follow-up procedure. Not sure about this, as I try to keep in mind that leg shape continues to decrease for up to a year after surgery.

I did have an increase in my abdomen after surgery, as anticipated, but once I got back to following a low carb-high protein eating lifestyle, it now seems to be decreasing. Did not have any increase in breast size.

I have lost an additional 9 lbs since post surgery weight, and continue to lose weight. Hopefully will lose another 10 lbs prior to next procedure. That is my goal.

My fear as I headed into this journey was that I would become “body perfect” obsessed. I have experienced some of that, acting once again as if my body is some enemy working against me that needs to be controlled. This, I suppose, will be a life long struggle. I try to remind myself that my body is my friend, and that rather than beating it into submission, I would be better served by treating it with loving tenderness, as I would a friend in need. Hard lesson to learn after SO MUCH FIGHTING.

I’ve come a long ways, and will continue to walk forward. Saw this yesterday, and it resonated with me. Hope we all our able to focus on the future, and let go of the past that cannot be changed. Happy New Year.. New You!