Did Primary Lymphedema Make Me Fat?

The Birthday Tune-Up

My husband’s birthday just passed, and my own is coming up next month.   I think for most people birthdays are a time for celebration and also a time of reflection.  We are certainly no spring chickens, my husband and I.  Maybe you are like me, and you take the time to reexamine your health around that time of year.  I actually have a follow up with my doctor next week, and I have been writing a list of things I want to discuss.

One of the first things that’s discussed at the doctor’s office is WEIGHT.  They call your name and usually you are immediately instructed to “Please step on the scale, Ma’am.” Sigh. There it is. No hiding now. Are you winning the battle of the budge? Well, I’m not exactly winning but not losing either. I’m sort of at a stalemate. To be honest though, it was never a battle per se until I aged with lymphedema and progressed to Stage 1.

My Cracker Jack Theory

On the subject of obesity and lymphedema, I have this theory that I’ve always wanted to post but have held back. I’ve finally decided to see what your thoughts are on this.

Once again, I’m not a doctor, nor do I play one on TV.  This is my personal opinion based on absolutely no medical research whatsoever.  Just empirical evidence based on 23 years of living with this genetic disease and listening to countless personal accounts of living with lymphedema from people all over the world and all walks of life.

Time and again we have heard that obesity causes secondary Lymphedema. Let’s be honest, obesity causes a lot of things.  I am not here to debate that issue at all.  What I am interested in talking about is examining the flip side of the coin.

In my case, I believe my primary Lymphedema was a catalyst for my obesity.  I will go as far as to say it was the single, major contributing factor.

Gasp!! 😨😨 There, I said it.  Out loud. Uh oh. Don’t start throwing tomatoes at me! Keep reading please.  Let me explain my Cracker Jack non-medical theory.

What Happens When You Start Out Thin With Lymphedema?

Have you ever stopped to wonder what happens to the people that start out thin and are diagnosed with lymphedema?  Or they don’t even know they have it if they are primary? What happens when lymphedema affects a normal sized person at their ideal weight?

Hmmm, let’s see.  I happen to think it’s an excellent question.  Maybe because I used to be one of those people.

Ladies and Gentlemen, I present Exhibit A and a timeline below (Incidentally, this is also a chronicle of aging with lymphedema.  More on that later.)

Pre-Lymphedema – The Normal Years

1992

No LE yet, and I’m about 110 lbs. Up until this point, the only brush I had with LE was my single bout of cellulitis from a cat scratch when I was 10 yrs old. I was also a caregiver when Dad had his bouts of cellulitis, and I hand washed his compression as stated in the previous blog post.  Basically helped as much as I could based on my understanding and age at the time. Hey, I was just a kid. What did I know?

1st Decade – The Mild Years

1994-2004

Ah, that first decade of mild lymphedema in only my right foot/ankle was full of ignorant bliss! I’d kill to get that back right now!  Hindsight is 20/20 of course. I was affected, but it did not impact my life much. It was simply an inconvenience in terms of a tight shoe at the end of the day. With my active lifestyle, I was no larger than 125 lbs, size 4 or 6, and worked out lifting weights & cardio 6 days a week.  I did step aerobics and kickboxing, and at one point had 15% body fat.

My ankle would swell up during the day, but always, always went down overnight. Also had my son and maintained my slim frame without issue.  No pain.  No biggie. During this time, i’m watching my Dad.  Why is my Dad so tired? Why is he always elevated? This is easy. I’m swollen too, but I’m ready to go. In my defense, I did go with him to the LE clinic. They said, “Don’t worry, Kid. You’ll never be as bad as your Dad.”

Famous last words of a fool.

2nd Decade – The Dark Years

2006

Super high stressful year.  My mother was in and out of the hospital. I’m living off of hospital vending machines and cafeteria food. It starts to “travel” up to my knee on the right leg. Swelling still goes down overnight, but my leg feels really heavy and hurts during the day though.  Strangers ask me “Do you know your leg is swollen?” On the outside I smile and dismiss.  On the inside I’m thinking, “Yes, I’m painfully aware it’s swollen. You I-D-I-O-T, it H-U-R-T-S.“

I start to gain weight for the first time in my life.  It makes me uncomfortable, but I’m not exactly sure what’s going on.

2007

Bilateral leg lymphedema after an 8 hour direct flight to Hawaii. Choose your expletive. This really sucks. Big time!!

2009-2013

Full blown bilateral starts to hit me hard, and I feel like I’m walking with concrete blocks.

The first to go is shoes that don’t fit due to my rising lymphatic lakes! Goodbye cute shoes, skirts, shorts, or ANYTHING showing my legs.

I’m struggling with chronic fatigue and pain in BOTH legs. Internally I start to wonder. Am I headed for a cane like my Dad? A wheelchair since it’s both legs?  That’s just the physical part.

Dealing with the emotional impact from stares and comments and feeling disfigured was an entirely different aspect to deal with.

Lymphedema Fog

All I wanted to do was lay down and elevate. I’m so tired. So, so tired.  I have never been more tired in my life.  I call this, Lympedema Fog. Yes, because medical science has not caught up with my Cracker Jack theory, I make up my own terms for it.

It’s as if the two concrete blocks I’m lugging around are holding 2 petri dishes full of toxins filled with bacteria slowly poisoning me.  You know that science experiment you did in middle school where you watched a smear of agar grow with mold inside the petri dish? That’s lymphedema congestion to me.  That’s how I picture it under the skin.  Slowly building and hardening over time, clogging up my lymphatic system.  This is why when we finally have MLD done properly, we can feel flu like symptoms.  I never believed in that until I had truncal and experienced it first-hand.

During this time, my son is finishing out his high school years, and we are always on the go. No time to sit down. The more I push, the more tired I get, and the less exercise I want to do. Check that, I can’t even find tennis shoes that fit!  I have to buy shoelaces for high top shoes to tie my loaves of bread for feet.

A vicious cycle develops. Tried CDT in 2010 and epic fail. They laughed at me and told to stop the gym as bilateral and just “briskly walk.” I became unhappy, embarrassed, and depressed.  The Lymphedema Fog would not lift.

2014

I maxed out at over 200 lbs. By then I’m placed on high blood pressure medication and a CPAP machine. I’m afraid I’ll stroke out!  What to do, who to turn to? Instead of fighting, I retreated further into myself and withdrew socially from friends and family.  Even my Dad.

In October of 2014, my husband and I decided to visit my Dad on a whim as a surprise.  We lived 2 hours away, so he would not normally expect to see us early on a Sunday morning.  We thought we might take him to church and brunch.

We knocked on the door, and Dad answered with his hair completely disheveled and in shock but very happy to see us.  He was also wearing pajama knee-length shorts.  For the first time in my adult life, I saw my Dad’s LE leg without compression.  I was completely floored.  The skin integrity was thin and scaly, dark discoloration, and clearly fibrotic, etc.  If you looked at his good leg compared to the LE leg, you would not believe that the two legs belonged to the very same person.  Like night and day.

I was so shocked.  He saw me looking at his leg, and he went outside to smoke a cigarette.  I wordlessly followed him. I’m thinking “If his leg really looks like THAT, what will my legs look like in 20 years?”

Without preamble and reading my mind, he sits down and takes a drag of his cigarette and says..

“You keep your shit up, both of your legs will look like mine when you are my age.  Instead of a cane, you will have a walker.  You need to get help.  You have an education, you live in a major city with some of the best hospitals in the country, you are employed, and you have insurance.  Trust me, your working years are numbered, and the clock is ticking right now against you.  Your time will run out, and Medicare is worthless.  I’m too old.  My leg can’t be saved, but you can try to save yourself.  I didn’t have what you have, which is why we pushed you so hard.  I have been wanting to tell you this for some time, and I’m only going to say it once.  Find a way to get some help and get wrapped again, or go buy yourself a walker.”

I sat there dumbfounded.  What could I say?  I knew better than to cry in front of the man that had had lymphedema twice as long as me.  He got up and stubbed out his cigarette without finishing it. He went back inside, started joking with my husband, and pretended like the conversation never took place.  True to his word, he never mentioned it again.

3rd Decade – Light After Darkness

I couldn’t sleep after that visit with my Dad.  I knew I had to find a way.  The turning point in this story is I confided in the doctor I knew the longest and trusted the most.  My Ob-Gyn had been my doctor since 1998.  He knew the “thin” me.  When he saw my legs at my physical, and I confessed I was at a loss, he was upset.  Right then and there he reached out to his network and made a referral for me.  Based on that referral, I found the most wonderful person in the world, my CLT.  I found proper treatment!  She taught me tools, coached me, and most importantly she BELIEVED in me. She believed in me when I found it hard to believe in myself.  Like a boxing trainer, my CLT taught me how to swing back at LE and literally go toe to toe against it.

You all know the rest. I reversed Stage 1 and have since dropped over 50 lbs.

It took me 15 months, and I have managed to maintain for 2 years.

This is me on World Lymphedema Day 2017.

Battling the Bulge & Lymphedema

The point of this blog post is I was not obese before LE. LE started to take me down, and I didn’t know how to fight back at the time. It made me extremely tired. Without proper treatment, I succumbed and crashed hard while ballooning up over 75 pounds.  I was almost obliterated mentally, physically, and emotionally. Once I received education and proper treatment, I was able to reduce and manage appropriately.

When I was mild, no LE clinic would take me or teach me how to wrap. They said I was too mild. Is there such a thing as too mild?  Was that code for you’re THIN, so you must be ok? Some kind of warped reverse discrimination?

A whole 20 years passed before I found effective treatment in 2014.  Yes, I had had CDT in 2010 but they did not teach me any tools.  I was just a number there. In the meantime, my body paid the price.  Now it’s a whole different story. I have a Lymphedema Toolbox and a great support team.

Truncal lymphedema has also been introduced into the mix, and I’m finding it even harder to fight the battle of the bulge.  This is why I am having to resort to alternative tools and diets.  I will never have a “thin” body without working exceptionally hard at it 24/7 every single day.

Final Thoughts

It’s important to empower lymphedema patients with the right information and tools they need, so they can fight back and take back their lives.  They need not be lulled into a false sense of security based on being thin, nor chastised for succumbing to dragging around concrete blocks all day for being overweight.  They need support.

If you are a doctor, CLT, or other medical professional, please take the patients’ entire history into account.  Listen with compassion and an open mind.

Do not judge that person’s story by the chapter you walked in on.  Unless you have this illness yourself, you can’t possibly know what it feels like.  Do not also presume that having lymphedema after 2 or 3 years is the same as having it for 20 or 30.  Step back and look at the entire picture.

Again, I am only sharing to try to help others and hopefully make the community more aware of what can happen even when you are thin or mild with lymphedema based on my personal experience.

Best,

Lymphie Strong