Lymphedema Distichiasis – How your eyelashes and leg swelling may have more in common than you think

Today I went for a full eye exam. I have been seeing the same doctor for the past 5 years, because I trust him. I trust him because we made a deal that we shook hands on and so far he has not broken it. I trust a person that can give their word on a handshake. I guess I’m old fashioned that way.

You see, I’m kind of weird. Every optometrist (O.D.) I have ever been to in my whole entire life has always said the same thing along the lines of “Whoah, do you realize that you have an extra set of eyelashes? Do you realize how rare it is? Do you mind if I gather my staff so they can look for educational and training purposes?” And the parade ensues with all of the questions. “Does it hurt? Do you pluck them? Do you feel them scratching you? How long have you had this? Have you tried electrolysis? Will she have them forever? What can be done?”

Um, I didn’t think I was all that special, because my Dad had them too! He went so far as to have electrolysis done, but they grew back! So I knew at least one other person on the planet (like Lymphedema) that had them and just had to suffer. I thought I just had to suffer too.

This doctor I have now actually gave me the name for it – Distichiasis. At our first meeting he asked me if I did mind sending in the staff for the parade. I said “Look, I’ve been through all of this before. I’ll let you bring someone in but I want your top person and don’t ask me to do it again unless you have another top performer here.” He agreed and we shook on it.

A little bit about him without releasing his name, “He is an Optometric Glaucoma Specialist and specializes in cataract and refractive surgery management. He also has extensive experience in the fitting of specialty contact lenses, including hybrid lenses, custom scleral lenses for patients with irregular corneas or post corneal surgery, as well as contact lenses for the treatment of ocular diseases. He has also been a clinical investigator for multiple FDA clinical trials for multifocal lens implants, intrastromal corneal inlays,  LASIK, and ophthalmic medications.”

Cue angelic heavenly music! The perfect match for me!! He said “V, you’ve gotta protect these eyes with contact lenses. The more the lashes scratch your cornea, the more damage will ensue. Don’t pluck them. Leave them long and wispy. When you pluck them, they’ll grow back short and sharp. Bad mix. You’ll get pink eye or worse. If you absolutely can’t stand it, make an appointment for me to pluck them in a sterile environment.” Did you know you can get cellulitis in your face?? Heck to no I’m not plucking mine unless it’s with my doctor.

Anyway, in 2016 my LE doc whipped out an eye magnifier and checked my eyes. I thought he was crazy. The swelling is in my legs, not my eyes! He said, “You have Lymphedema Distichiasis and the 2nd patient in 17 years that I have found. You are incredibly rare.” What the ____?! Haha I explained that my Dad had them too.

I can’t believe it took 22 years to connect my eyelashes with my Lymphedema!!!!

Today I asked my eye doc to take some pictures with my phone. He kept saying that he had never heard of LE Distichiasis in any eye textbook, so he was happy to take the photos. My eyes are dilated, so that’s why they look weird. Many of you have asked, so I thought I would share.

Yes, they are annoying as heck. Like having a perpetual eyelash stuck in your eyes. I am tempted to pluck them, but I fear cellulitis more than I hate the annoyance. For the most part, my contact lenses protect my eyes.

Ah, Lymphedema, the gift that keeps on giving!!!! One of these days, straight to the moon with you! If we find a cure for LE, I still wonder what I’m going to do about the eyelashes!

Wishing you great lymphatic health,


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Lymphedema Reduction – Chasing The Setting Sun

I’m not a morning person at all. I know, I know, studies show that we should exercise in the morning when our cortisol levels are the lowest. Well, all due respect, Mr. Researcher, I ain’t doin’ it. I need my anti-inflammation sleep.  It really depends on how well I have slept the night before.   Sleeping with lymphedema is not always easy.  For many of us, shooting pain, tingling, and other symptoms are experienced at night.  Not to mention going to the restroom in nighttime garments is very awkward.

I prefer to workout or walk in the evenings. I like to chase the setting sun. A beautiful sunset to me is a sign that the day is almost over. Sometimes that means I’ve survived another day filled with pain. It’s an accomplishment, and it gives me a sense of peace.

This past week was week 3 into Complete Decongestive Therapy (CDT). This means I’m wrapped like a lymphedema burrito 23/7. Hold the cheese and onions.

Part of CDT includes self care and exercise. My CDT homework this week was to work my calf muscles to pump the lesser saphenous vein which travels right smack down the center of the gastrocnemius muscles. Two muscles perfectly placed to #movethatlymph when activated. You know the line from the Justice League® “Wonder Twin Powers, ACTIVATE!!”  I found this out just this past week!


I do not own the source of this image. It is a random calf anatomy photo.

So, I’ve been working hard on this on the treadmill in wraps on 2-10% incline. Then the other night I walked 3.02 miles in bandages and post op shoes. Y’all know I’ve done 5Ks before, and all of these runners were passing me. They had such beautiful legs, and I became very envious.

Not really envious of their physique per se, but that they were free of constraints while I literally felt like my legs were in a straight jacket.


It’s tough to walk in post ops with bandaged feet. I wanted to bust out of them right then and there and run in the grass barefoot and carefree. For someone like me, that’s very unwise. I could get a cut which might lead to a cellulitis infection and wind up in the hospital. Plus the whole point of the darn wraps is to reduce my swelling.

It took me 1:18 hours according to my Apple Watch, but I finished. Just as that beautiful sunset went down.  Actually, it was dark by that point. I was sweaty and sticky when I got home, so I took my wraps off to take a shower. This is what happened next.

I saw my right ankle bone, and I began to cry.

This was the first time I had seen my ankle bone in MONTHS.  I said “Hello, OLD FRIEND!!!!!”

Then I saw both legs side by side, and the waterworks really started. I’m so thankful my legs still respond to treatment. Week 3 into CDT, and this is the most reduced I have been in a long time.

My husband came into our room and said “Wow, great job!”  Then he said “One of these days you won’t need these anymore.  I have faith.”  Then the waterworks really started.  I curled up in his arms and fell asleep.

I know that some of you might be thinking “I wish my limb would respond to treatment.” Or “You are not that bad as far as the size of your limbs.”

That’s true.

I am also racing against the clock and aging process, because I know what my father’s leg looked like in his 60’s.  May he rest in peace.  If I’m blessed enough to even live as long as my father, that means I have at least TWENTY MORE YEARS of management.  It’s either doing this or wait for a cure.  Which do you think will come first?  The fact is that none of us know what tomorrow will bring.  I don’t know if and when my body will stop responding to this type of therapy. I am personally hopeful and prayerful, but I choose to bandage both legs in the meantime to stop the progression as much as humanly possible.

Game Changers this Round

  • Diaphragmatic breathing – 30 min everyday
  • Huge sugar reduction, working hard towards Keto
  • Calf pumping – Treadmill work in wraps on 10% incline

Next goals are truncal lymphedema reduction.  (Remember I have LE in three areas.)  We will keep on keeping on.

Wishing you great lymphatic health.  I hope that you are pain and cellulitis free. Have a great day!

Lymphie Strong

Breathing and Lymphedema – my CDT homework 

Before I tell you about my homework, I want to take you back in time. These memories are what comes to mind when I think about diaphragmatic breathing.  When I was in the 4th grade, my Mother came home from work one day with an ad in the newspaper (yes, newspapers were still around back then haha) that listed tryout times for a local children’s community chorus.  This was an organization sponsored by the city at large and not affiliated with my elementary school.  At the dinner table, she announced that I was going to audition the following week and handed me the ad.  I was stunned.

Me:  Um, audition? Sing in front of people? Why? Noooooo!!!!!

Mom: Yes, you are.

Me: But Dad? Please no!!!

Dad: Your Mother says this will be good for you. You should expand your horizons.  I’m out of it.

Me: But I don’t know how to sing!

Mom: You will learn. Eat your dinner.


A week later we were in the hallway of the College of Fine Arts auditorium, and I made one last plead to go home. Mom sat there reading her newspaper and ignored me. Minutes later my name was called.  Palms sweating, I followed the Choir Director into a room with choir risers, music sheets, and a beautiful black piano.  She said my name was lovely and asked if I had singing experience. I answered “No.” She smiled as she hit a key on the piano and said repeat after me “Do-re-mi-fa-so-la-ti-doooooo,” I tried it. Not very good. I was ready to bolt.

She stepped toward me and asked “May I?” as she pointed to my tummy.  I nodded. With a finger she barely poked my tummy and told me to breath in pushing my tummy all the way out and then fill my chest with air without my  shoulders rising. “Good job,” she said.  “Now breathe out.”

“We use our diaphragm in singing,” she informed me.  We do?  Diaphragm? What’s that? I tried this a few times and on the last go she said, “Now again.  Do-re-mi-fa-so-la-ti-dooooo.”  My singing was much louder and clearer. I smiled. Even I could tell the difference.  She smiled with approval.  She fixed my posture and again with the breathing exercises. Again repeating different notes on the scale as she hit various piano keys.

At home Dad asked me how it went.  I said, “Well, she sounded like Mary Poppins and made me breathe a lot. Like this.” I poked him in the stomach. 

The next day Mom and Dad got the call that I was in, and I spent the next two years diaphragmatic breathing as I sang, learned about people like Bach and Strauss, and sometimes sang in French and German. It was one of the most rewarding experiences of my childhood.  I was 9 yrs old when I learned about the power of diaphragmatic breathing.

Why does this matter over 3 decades later? This pesky lymphedema. 

Breathing for Lymphatic Health

Research studies suggest that diaphragmatic breathing alone reaps all kinds of health benefits including activating the lymphatic system.  The lymphatic system is mostly about your gut, and your diaphragm helps kick it into gear.  I don’t know all the medical stuff, but really smart people study this.  I knew about breathing benefits in terms of delivering oxygen to your blood cells, but I didn’t know about the lymphatic system benefits.

CDT is a little scary for first time Lymphies.  Hopefully your CLT is giving you suggestions to try at home.  You can be out of your comfort zone for sure with the wraps and everything else thrown at you.  My first assignment for this CDT round is deep breathing and truncal stretching.  Last Thursday when I was all excited about the new patient intake form with the pain question, I was told to breathe for at least 30 minutes per day.  Cue Choir Director flashbacks.  Sounds weird huh? I mean we breathe all day long without giving it any thought. It can be difficult to carve out time to deliberately do and get started.  I need to get my truncal swelling down though, and this is one of the best tools to have in the LE toolbox.

Note – While most people recommend yoga or pilates, I’m not a yoga pro so I can’t speak to it from personal experience.  

Breathing Hacks

Some little hacks I already had in my Lymphie toolbox are as follows.


Break out your karaoke machine.  Don’t laugh! Around the house and in the car, my jams are pumped up! These days my voice is terribly off key, but I’m working on that 4th grade training again. Can you picture me twirling around my living room Mary Poppins style?  Supercalifragilisticexpialidocious  Why does lymphedema homework have to be boring? For songs I know all the words to, it has to be 80’s or 90’s music. A side benefit is that it embarrasses my son.  Hehe

Lung Fitness Gadgets

A group member in one of my Facebook groups told me back in 2016 about some gadgets you can get on Amazon to work on lung fitness.  Remember that time you had surgery, and the respiratory therapist walked in with this thing? Don’t throw it away! It can help you as a deep breathing exerciser.

This next gadget is used by some runners to improve fitness.  Search on YouTube for videos.  This is what I have been using lately.

Both of these things are experimental and anecdotal of course, but I like them.  Don’t judge.

More Breathing Advice

This week I turned to Kathleen Lisson CMT, CLT for her thoughts and tips on diaphragmatic breathing.

Diaphragmatic breathing is a really clever hack for moving lymph through our lymphatic system. Unlike sitting around in a pump or practicing self-MLD (which are both essential), we can switch from breathing shallowly to breathing deeply and using our diaphragm anytime and anywhere, and no one will be able to tell!

The first question – am I doing it right? Many people will tell you to focus on pushing your belly out as you breathe. This is good advice, but I have found that it’s much easier to train breathing when we are lying down. An easy way to really experience what diaphragmatic breathing feels like is to lay down on our back with bent knees and pile some books on our tummy, right over our belly button. For a child, use a stuffed animal. Focus on moving the books or teddy bear up and down as we breathe. I found that it was a little harder than I thought it was going to be and did really train my body to breathe by moving my diaphragm.

Diaphragmatic breathing is also built into some movement practices that are good for getting lymph moving, like Qi Gong. I find that smelling or diffusing Frankincense essential oil helps to increase my deep breathing as well.

I talk more about diaphragmatic breathing in my book ‘Swollen, Bloated and Puffy,’ and for a deep dive into breathing, I recommend reading ‘Breathe’ by Dr. Belisa Vranich. — Kathleen Lisson CMT, CLT

Books on my belly button?  Why didn’t I think of that? So simple, easy, and CHEAP. I’m going to try this out, and I’m also on the hunt for a Qi Gong class and the book called “Breathe.”  It’s always good to get a fresh perspective on what others recommend.

Results So Far

The combination of breathing, changes in eating, and MLD already have my system detoxing hard.  This was a phenomenon that I had not experienced prior to CDT for the trunk in 2016.  I literally feel my trunk detoxifying.  It’s kind of like you are coming down with the flu but with no cough or fever.  A general feeling of tiredness, irritability, and some aches.  I go to the restroom A LOT and have been drinking water and hot herbal teas to replenish. The good news is it’s a great sign my lymph is moving.  You know what they say. Mom is always right. I can hear her voice saying, “You will learn. Eat your dinner.” 

Do you have any tips for diaphragmatic breathing? Please share them below. 

Wishing you awesome lymphatic health,

Lymphie Strong

Pain and Lymphedema

Let’s talk about the “P” word. The one word in healthcare that seems to be acceptable everywhere in medicine except the world of lymphedema.  Drum roll…


If you gather around a group of Lymphies online or in person, this subject inevitably comes up.  When listening to a person talk about it in person, I find myself unconsciously touching my worst of my two LE legs.  Sometimes I lean forward and rub my back.  Almost like a self soothing defense mechanism.  The proverbial placation “There, there. It will be okay.”  When I was at the NLN, my fellow Lymphies talked about the flight impact to our bodies in varying degrees.  This conversation included pain.

My father talked about lymphedema pain long before I ever experienced it for the first time.  He did not complain, but he did acknowledge it and warned me about it.  I think his biggest pain was from his cellulitis bouts.  The annoying pain for him was barometric pressure changes.  I scoffed at this when I was young and early on with my LE.  I thought it was some kind of old wive’s tale.  Now I experience it myself, and it is very real.

There are some doctors and physical therapists that subscribe to the school of thought that pain and lymphedema do not go in the same sentence. The first time I heard this, I was stunned.  If I were to show the feature picture of this blog post on how my swollen feet looked in 2014 to any person walking down the street and ask “Do these feet look like they are in pain?” What do you think the answer might be?

DUH! YESSSS!! To have legs like this feels like your skin will split open.  Can you imagine your skin splitting open?

Inflammation in most circumstances equals pain. Sprained ankle swelling and post surgical swelling are all inflammatory responses. Why is lymphedema swelling pain not universally acknowledged?

Let’s face it, if I showed a 3 yr old my swollen feet picture, they’d say something along the lines of “You have an owie.” It honestly boggles my mind that today in 2017 with all of the information instantly at our fingertips, people still debate whether LE is painful.

Good News

This is why I was so happy at my CDT evaluation yesterday to learn that my hospital had adopted a NEW patient intake form specifically for lymphedema patients.  Happy dance!!!! This form also included the holy grail of all intake questions.

  • Do you experience pain with your Lymphedema?
  • On a scale of 1 to 10, what is the severity?
  • What, if anything, eases your pain?

Wait. What?? Let me tell you I wanted to jump up and kiss and hug the powers that be that approved this change. Someone somewhere actually wanted to know about MY pain. I began to scribble fiercely and in detail. YES, I HAVE PAIN!!! 

Pain Thresholds

Pain is unique and highly individualized. Pain is PERSONAL.  Pain can make you feel alive.  It can bring you to your knees.  I had an outpatient surgery once where I was sent home without taking the pain medicines in advance.  I threw up on the side of the road from so much pain.  I literally saw stars, white lightening, and felt like I couldn’t breathe.

Be that as it may, I know I will never know the pain my Dad experienced with over 20 years of cellulitis bouts under his belt.  When he was Stage 4 metastatic cancer unbeknownst to him, he was still taking Tylenol.  His doctor took off his glasses and looked at me incredulously. Staring me straight in the eyes he said, “Your Dad is one tough man. I’ve seen people with scans like these that can’t even move, and he’s still walking to the bathroom.  Don’t count him out yet!”

Since it’s so personal, it’s tough to talk about in that sense.  I would say I have a high threshold for pain because I live with it every day. It’s just part of my existence.  Lymphedema is not the only incurable lifelong condition I have.  I’m sure there are others out there who feel the same.  Obviously there are others with more severe and complex cases that deal with a much higher degree.

There comes a point when you just can’t take it anymore. I’m at that point right now. The picture with the red pants above are my legs back in February, but they don’t look like that right now.

My right leg, LE since ‘94, has been giving me problems since July 2017. At first I chalked it up to typical summer heat exacerbation. Then I attributed it to what I call “old LE”, my own made up term. Finally I went to the doctor and said enough is enough. The swelling, as pictured below, is slowly creeping back up despite my best efforts.  It affects my entire leg to the hip.

Speaking of “old LE”, I didn’t have pain in 1994 when I i first presented! Not 20, 15, or even 10 years ago.  Heaviness, tightness, and discomfort but nothing like this. Like a migraine in my leg that never goes away. The pain I have today did not surface until 2010, so at that point I was 16 years in and bilateral.  Sometimes it feels like I’m walking on broken glass.

Now that I also have truncal LE, it’s hard to go a day truly pain free. I cherish the pain free days dearly when I have them though.

Everyone is so different. It’s impossible to say whether all patients will experience pain with LE, but conversely it’s irresponsible to say no patients experience any pain or lymphedema is not painful. That’s simply not true.  Anecdotal or not, it’s very real.

At this point, I combat my pain with my lymphedema toolbox and CDT.  However, I am not naive enough to believe that I will not need pain medication in the future.

My Pain Has a Voice

I’m so glad the new LE patient intake form was adopted at my hospital.  I felt much better talking about and voicing my concerns with my CLT. It gives me comfort that my pain is being tracked and recorded as part of my medical records.

At the end of the day, we just want to be acknowledged and validated for what we feel. We may appear to look normal on the outside, but that’s not necessarily what we feel on the inside.

Be kind to all for we know not what internal battle another person is facing. 

This is why I always close my videos with the line, “I’m wishing you great lymphatic health, and I hope that you are pain and cellulitis free.”  Rest it peace, Dad. ❤️

Drop your thoughts on pain in the blog comments below.  

All my Best,

Lymphie Strong

Hurricane Harvey TX Family Donation Request 


I want to thank the entire Lymphedema community for their prayers, texts, and the incredible support you have demonstrated towards all in Texas impacted by Hurricane Harvey.  

Unfortunately, the storm has impacted someone very dear to me. My mother’s baby sister, Lydia, and her family sustained significant roof damage to their home. They evacuated to Round Rock and came home this evening to discover their home did not withstand the storm very well. 

Mr. & Mrs. Johnny Flores recently celebrated 38 years of marriage.  They are now displaced from their home until the roof can be repaired.  Both also care for two of their grandchildren after their eldest daughter’s passing, and they are about to start school. 

My Aunt Lydia has been a personal confidante and shoulder to cry on since my own mother’s passing in 2006.  When I have had surgery in Houston, she’s traveled from my hometown to visit and make sure I’m okay.  This was a 4 hour round trip for her.  In the 11 years since my mother’s passing, she has always been there for us. 

When my father had cancer last year, she delivered hot meals to us almost every single day or kept me company while cooking there. 

There just isn’t a more selfless person who is in need right now that I personally know.  These are the roof damage photos.  

Please send donations to: 

Lymphie Strong 

20180 Park Row #6047

Katy, TX 77491

Any amount is appreciated. God Bless! 

Thank you, 

Vern / Lymphie Strong 

The LS Xpandanista

Does the average person give much thought to socks?  I guess it depends on your needs. Most need socks for warmth.  Runners and hikers for sure benefit from good socks.  Some people just go and get the cheapest they can find and wear them until they have giant holes in them.  I’m not naming any names.  To someone with either bilateral or unilateral lymphedema, socks all of sudden become very important  Namely, finding a pair that will fit even if just to cover bandages.  I want to talk about this photo and why I decided to partner with Xpandasox and donate to LE&RN in doing so.

I have primary bilateral lymphedema.  I’m also one of these people that has to match, especially at the gym.  People close to me have made fun of me over it.   Vern, the formerly with two sock drawers sock junkie, that’s me.  It’s just I just loved fun and funky socks.  Before I could not fit into them, I had all kinds of colors and types for the gym and athlesiure wear.  That pretty much ended in 2010.

Until now.

In January 2016, I was diagnosed with truncal lymphedema after having it in my legs for 22 years.  As stated before, it seemingly appeared out of nowhere for no rhyme or reason. Maybe I’m lucky in that it only presents so far in my back and along my ribs. I have had no trauma to my back.  My doctor did a CT scan and MRI, but no root cause was found. What we do know now is that people with primary Lymphedema can have it appear anywhere or in multiple regions of the body.  Lee (my nickname for lymphedema) just decided to take room upstairs in my body without asking and no notice!!

What does this really mean for me?

For the rest of my life I will never be naturally thin in the torso or have normal looking legs or ankles.  At least not without a significant amount of time, COMPRESSION, complete decongestive therapy, manual lymphatic drainage, pumping, exercise, insurance, medical bills, and other lymphedema toolbox tools to sustain.

I will repeat the beginning of that first part again.


Yes, a life sentence because we all know that lymphedema currently has no cure. For all those with LE, we want the ending to that sentence to change. We want it to say For the rest of my life until a cure is found,” or “For the rest of my life until a medicine is found” for LE.

Please, No More Future Lymphies

When I was 20, lymphedema appeared in my right foot.  Today, I want to not have to look at my 23 yr old son’s legs every single day and wonder if he too will inherit this from me. Yes, I often talk about my father but he’s passed on. I have a son too, so I’m looking ahead to the future.  It also could very well present in my brother!  Who knows!  Beyond my immediate family, I have cousins with daughters that are approaching that age or adolescence. One will be 15 next weekend.

To summarize, I do not want my family looking at a 4th known generation with LE!!

The thing is, I don’t just want this for me and my family. I/WE want this for the millions worldwide that need a cure too.

So what does all of the above have to do with a bunch of socks?


One of the organizations trailblazing for research is the Lymphatic Education & Research Network (LE&RN).  Most notably is the clinical research being done for secondary LE here recently that may have future benefits for those with primary too in the form of a pill.  It’s only through continued research that that relief will happen for me and my family, and I hope it happens in my lifetime. Through research I was able to get a Flexitouch jacket for my truncal LE even though I’m primary and the product was not initially designed for my specific case. It was designed for people with secondary LE from head and neck cancers.

Lymphedema has run in my family for at least 112 years. The cycle must STOP.   And while we may not be able to completely eradicate it, at least we can work on improving the quality of life and decrease the amount of maintenance required.


Xpandasox was a product I tried earlier this year when I was in CDT.  I first learned about the socks through the LE&RN Expo.  For years, I had been telling my Dad that short stretch bandages should come in colors and prints the way casts now come in colors.  I wanted Dallas Cowboys colors.  Ha!  Well, the next best thing to that is animal print expanding socks!  When I first saw these socks, my inner Lymphie goddess did a happy dance.

As a woman with lymphedema for over half my life, I want to thank them for creating this wonderful product in fun, gorgeous colors and styles. Finally a pair of socks that can stretch over my bandages.  When I told my friends that I was excited about these socks, they didn’t “get it,” but I know those of you reading this blog post do.

One evening I wore the zebra socks with shorts and a pink summer top to dinner with my family. It began to rain. Not only did I walk into a restaurant with full confidence, but I was happy that my bandages were covered from the light shower and not get dirty. No one batted an eye at my socks.  Xpandasox also donates socks to the homeless as part of their Sock Bank initiative.

Knowing that Xpandasox is a supporter of the LE community as part of LE&RN Expo and believes in research and education too makes it an honor to post it on my blog.

I don’t have all the answers, but I’m hoping for a better future.  All I know is that we can try to make a difference together in prayer, faith, and most importantly action and awareness.

Live in your strength and #MOVETHATLYMPH!

Wishing you great lymphatic health,


Father’s Day Surprise

Saturday night I got home from swimming, and this was on my doorstep. I began crying tears of joy. For those that don’t know, I developed truncal Lymphedema in my back in January 2016. No specific cause identified. This was after 22 years in my legs. It’s been a steep learning curve to manage both legs and my trunk. My biggest problem was that I cannot physically reach my back to do self MLD. 

In January 2017, I decided on my own to send an email to my Tactile Medical rep asking if they could sell the jacket piece of the Flexitouch head/neck pump solution they recently released.  She didn’t say yes, but she didn’t say no either. I don’t have swelling in my arms, so I just needed the jacket only. 

It took 6 months of clinical research and paperwork, but my CLT was able thoroughly document my case during CDT. My doctor prescribed it, and I received a custom program.  This will help the swelling I have in the upper horizontal watershed of my back and lateral sides of my trunk along the ribs. 
I’m not only happy that I received this, but I’m hoping I paved the way for anybody else out there similar to my case. Since it was Father’s Day weekend, I can’t help but think my Dad was helping from heaven. 

If you suspect you have truncal Le, this is a blog post I did. I’m not a medical professional, but it might help.

Make No Bones About It

I snapped a pic of my flare up.  Recently someone asked me, “What’s an LE flare up?” The response was almost unanimous. An LE flare up is when you are extra swollen, extra achey, and usually in pain due to external forces like illness other than LE, barometric weather changes, prolonged sitting/standing from travel or work, heat, insect bites, etc.  The list is probably endless and obviously based on the individual.  When I have a flare up, I pump, elevate, drink lots of green tea and water, and wrap. 

Thursday was a 10 hr workday on top of a 7:45 am LE appointment. I was going to post how excited I was about starting CDT with my original CLT.  The one that’ helped me reduce in 2014.  Can you say reunited with a bestie? Haha We talked so much, and she told me all about what she learned at the NLN conference last year. 

That excitement quickly died into concern.  The bad news is both my LE doctor (saw him last Monday) and her recognized straightaway that I’m swollen on the right leg. Way out of range for my baseline.  Today I had confirmed pitting for the first time in 3 years and about a 5 cm difference between both legs. My CLT arched both eyebrows, because no bones were visible anymore.

Siiiigh… I snapped the pic at the end of the day. 

I’ll always be honest with you guys. This is not a joke. I was bitten by a spider on my torso and put on 10 lbs almost instantly and have been fighting just a general feeling of malaise. My garments are tight. I am finishing up antibiotics though. ANYTIME I have stress or sickness, fluid settles in the weakest part of my lymphatic system. That’s my right ankle. I was honestly expecting cellulitis to hit, but so far I’m good. Knock wood.  KNOCK WOOD.

Back to the swollen right leg.  Though I have bilateral leg LE plus truncal, my poor right ankle was the first to step up to the plate Lymphie style.  It’s one tough son of a gun, let me tell you.  LE has been there since big hair and hair guitar rock bands like Poison were cool.  Since Netscape Navigator was the best browser on the market.  Way before Google! 

Back to the swelling concern.  You ever have one of those moments when you look at someone straight in the eyes and words pass but you don’t say anything? That’s me with my LE doctor, and CLT. The words that passed without being spoken were that I’m 23 years into this, and I’m AGING with LE. So despite my best efforts, it’s maybe time to go flat knit custom. 

My doctor wrote the script and deadpanned  “Please stay out of trouble.  You’re one of my best patients.” 

Hmmm… maybe he sensed my reluctance to change yet AGAIN.  Maybe he knows I might pull my old tricks of when I could get away with no compression in my 20s and early 30’s, except I might wear off the shelf instead of just going bare.  You think I don’t know that the mild peeps “skip” days. Puuleeze, I did it all the time. I know, it’s human nature. Then one day, my chances ran out. Just like now. 

I know the veteran Lymphies (not military but LE lifers) will say “We told you, Vern!!” Yes, you did tell me that flat knit was the way to go.  That’s fine. I fought a good fight. Didn’t we all? I predict I will be in denial and try to find some type of workaround plan. It seems like every year I have some sort of change with respect to LE.  Frankly, it’s kind of getting on my nerves already!

So this is me putting it out there. If you are mild or relatively new to this, think about the long term. Think about where you will be 20 years from now, which will be 2037. Make no bones about it, LE changes over time.  

I’ll keep you posted on my CDT journey.  Wishing you awesome lymphatic health.

Lymphie Strong

That Moment I Became An LE Awareness Billboard 

I ran/walked the equivalent of a 5K this past weekend in Houston, TX at Memorial Park. It has a popular jogging trail in one of the largest urban parks in the United States. About 3 million people visit it annually according to Google.

I can’t tell you how many runners and walkers read my #MOVETHATLYMPH for Lymphedema & Lymphatic Health t-shirt.  Several hundred or maybe even a thousand?  Possibly more.  So many curious people, and a few seemed to actually recognize the word lymphedema.  One person did a double take but kept walking.  No one directly asked me about LE, but many stared at my shirt when I came to a section where many stretch out and drink water. 

As most of you know by now, Lymphedema has run in my family for at least 3 generations and over 100 years.  

If you follow my blog, you know that my family accidentally found treatment for LE in the late 90’s when it is said that CDT first started becoming popular in the United States.  Germany was way ahead in LE treatment. Even almost 20 years later, you will not find treatment centers across the US in small towns. There remains a lack of awareness and doctors who can properly diagnose.  Some people have to travel for hours for therapy, which is why so many struggle.  This problem is not just unique to the US either.  

To recap the story for new readers, in 1998 I saw a billboard on the Southwest Freeway in Houston with two legs that looked like my Dad’s left leg. My right ankle was just puffy at that point, and I was still unilateral (Sigh).  I was 4 years in, and Dad was 24 years in respectively.  That night I called my parents and said “I think we have something called lymphedema.” 

What would have happened had I not moved to Houston? Or had that person not agreed to be on the billboard in the first place?  I shudder to think.  That billboard was a saving grace for us in many ways. It put a name to something that was previously unknown and dismissed. It VALIDATED that what we had was REAL which is a relief in and of itself.

Today in 2017, I’m still 4 years younger than he was when he was officially diagnosed with LE in 1998. He was 46 yrs old and symptomatic for decades. 

In the last years of his life, Dad walked with a cane due to LE combined with osteoarthritis.  Walking with a cane or walker is common in the LE community for those affected in the lower extremities, especially with older Lymphies who were either misdiagnosed or completely ignored for decades like him. 

This is Dad with his cane in August 2015. 

When I first started running in late 2015, I did an Insane Inflatable 5K with some friends in my hometown.  I went to Dad’s house for lunch afterward. He had made some homemade chicken soup.  Sidebar: Dad liked to cook with what he called the 5 minute method – 5 minutes standing and 5 minutes sitting. All chopping was done sitting.  His walking was basically a shuffle, but he always kept moving. 

He sat down after I had served myself and asked me, “Mind if I ask what you are running for?” He knew me. He knew I had never run a race in my life and probably wouldn’t run unless someone was chasing after me.  Ha!!

Thinking I could preemptively guess the joke about someone chasing me, I laughed and said “Nothing.” Unexpectedly he responded “What? Not Cancer, Alzheimer’s, or ALS?  That’s dumb to be running for nothing.  If you want to run, you can run and do some laundry for me. Hmmm..come to think of it, some dusting and mopping needs to be done. You can run all over the house. I have plenty of stuff for you to do if you want to run.”

He was joking and laughing with a twinkle in his eye, but I knew deep down there was a kernel of truth to what he was telling me. 

When it came to cooking, he often said that people (namely me haha) had a tendency to mess up a good salad making opportunity by drowning it in dressing, mayonnaise, mustard, marshmallow creme, vinegar, oil, or whatever to the point of not being able to recognize the main ingredient. Why make a fruit salad if you can’t taste the fruit?…

Why do anything without a sense of purpose when there is an opportunity to do so?  

Knowing this, I read between the lines, but I joked back, “Well, heck, let me practice. How am I going to sign up for a race for a cause just to pass out? I’ll be THE CAUSE of an ambulance rolling up and hauling me out of there.”  He roared with laughter, and I almost fell out of my chair from laughing so hard. 

Just because I laughed doesn’t mean I forgot. It really gnawed at me for some reason.  A week or 2 later, I told him “I’m going to run for Lymphedema. Nobody runs for Lymphedema.” He said “Damn straight. Do it! Run for both of us, ok?” I said “Of course I’ll run for both of us. You have my word.”  That, my friends, is how my LE advocacy journey was born. 

Eight months after that conversation, he passed away from cancer. This is me keeping my word to him in heaven. Now I’m the walking, talking, writing  billboard for LE.  I want to say thank you to that person that agreed to have their Lymphie legs photographed and mounted on a freeway billboard in 1998.  This is my way of paying it forward.

I will commit to #MOVETHATLYMPH for Lymphedema and Lymphatic Health and advocating in general for as long as I can for all types of LE. You have my word.  

Will you commit to spreading LE awareness too? Please give it some thought and consideration.  It will take all of us together to crush this #Lymphedemic.  There are all kinds of LE activism and advocacy opportunities today.  Something as simple as posting information on your social media accounts or wearing a shirt can go a long way. 

If you have a #MOVETHATLYMPH shirt now, I encourage to post an awareness moment or reactions you had while wearing it.  As always, I’m wishing you awesome lymphatic health. 💜 

Lessons Learned from a Lymphie

The Poll

Recently I did a poll in a closed Facebook group I admin as part of my advocacy efforts. The feedback was that #LymphedemaTips was the top topic everyone wanted to see posted in the group.  Not surprising though.  True to my word, I revamped the structure of the group and posted a few tips about using a rolling stick, vibration platform, and compression.

I kicked it off with a picture of how I experimented with some compression socks, and one leg swelled up and the other was fine.

Then I thought about it, and I had a realization.

Any Lymphie probably has a stack up to their neck of stuff they have tried to use as a tool to alleviate the symptoms of this incurable disease.  Yes, like many, I have a pile of crap that has not worked for me. Don’t we all? This disease is EXPENSIVE!!!

However, there’s nothing more expensive than time itself.  Once it’s gone, it’s gone.  You can’t get it back or rewind it.  The few moments you are using reading this are now gone forever.  Right?

#LymphedemaTip No. 4

For Lymphedema Tip #4, I decided I would share some of the lessons learned about living with Lymphedema I have accumulated over TIME.  It’s kind of hard to summarize 23 years of LE in a nutshell, but I’ll give it a shot.

Lessons Learned

  • First, I’m not perfect. I continue to make and have made a lot of mistakes as a Lymphedema patient, blogger, advocate, and group Admin.  You will make mistakes with LE too.
  • I don’t know everything about LE and regret that I acted like that at one point in my life. In fact, the more people I meet and stories I hear, the less I think I know.
  • I try to keep learning from each and every single person I meet.
  • LE is not just caused by lymph node removal or genetics.  People get LE from all kinds of things such as surgeries like total knee replacements, c-sections, ankle fusion, traumatic injury such as a car accident, from flying, and plain old medical error by doctors.
  • I don’t care what stage you are, if you can #movethatlymph an inch or a marathon, where you come from, or what you have. If you have LE, you are welcome in the group/blog as long as you are a nice person and respectful.
  • Pain and suffering from LE is based on the individual.  Never let anyone minimize your feelings or pain.  It is not a competition.
  • I think the benefit of my having had LE for such a long time and having known LE in my family growing up my entire life is that I understand everyone is in a different place in their journey. You can’t judge anyone by the chapter that you walked in on in their LE book.
  • It took me 20 years to find good fitting compression.  I hope that doesn’t happen to you.
  • I’ve been skinny, and I’ve been fat. I’m still not cured but diet changes have helped me.
  • I’ve had LE spread 3 times, and it’s a very real possibility I will go full body as I age. Aging with LE is inevitable, but it beats the alternative.
  • I know my employment years are numbered, so I’m doing what I can now.
  • I know the future is completely unpredictable and cellulitis can strike at any time on any part of the body.
  • I can be stuck with this disease until I die, but I pray that doesn’t happen.
  • Fight for a cure, but being angry at the world doesn’t necessarily solve anything.
  • I don’t focus on this group/blog being super “technical”, because I’m not qualified as a CLT or doctor. There are other resources for that.
  • Most of dealing with this disease is mental and about attitude. It’s about being knocked down over and over and getting back up to face another day. Sometimes with tears, sometimes hanging on for dear life, but still facing it.
  • It’s okay to cry and vent.
  • I had a parent with LE, and I watched my mother care for her LE husband and his cellulitis bouts for 32 years until she passed. I watched her feel helpless.  You don’t forget something like that.
  • Unfortunately, there are always new members to add. Hopefully that will end one day.
  • If you have a lot of knowledge or want to help, that’s great. Please volunteer in your area or for an organization. Write a blog, or lobby on Capitol Hill.  We have MOUNTAINS TO MOVE for Lymphedema.

As more time passes, I’m sure this list will grow and change. I encourage you to make your own list. You might be surprised at how far you’ve come without even realizing it. 

Wishing you awesome lymphatic health as always!