Back On The Mound Again

Chrissy Hilcken-Kempner’s story is one of the emotional healing and absolute strength of a former collegiate Division I softball player who finished her college athlete program against all odds. Like many in the community, her lymphedema journey occurred during a critical period in her life as she transitioned from adolescence into adulthood. 

The following blog post was written by her in her own words and shared as a member of The Lymphedema Running & Fitness Club for which I am an admin of on Facebook. While we have members from around the globe that participate in various sports, Chrissy is our first former competitive softball player to join the group. She gave me permission to post her story on this blog.

If you read this and you find parallels into your own journey of being dismissed and misdiagnosed for years, then I hope you are as equally inspired as I was at her ultimate personal triumph. 

I am done remaining silent. Hopefully my story can raise some awareness about Lymphedema, the awareness we so desperately need and deserve.

When I was thirteen I had a severe cellulitis infection in both hands, far worse in the right. My mom and I went to see a covering physician affiliated with North Shore University Hospital, which is now Northwell Health. The doctor proceeded to tell my mother I was crazy and my hand was not bad (let me mention that my mother is a brilliant, well respected, registered nurse). In fact, he insinuated that my mother was attempting to obtain narcotics, thereby using me in the process. That night, I couldn’t feed myself, dress myself, or open doors. My hands felt like they were engulfed in flames. In the middle of the night, I woke my mom up in tears, and she took me to the Emergency room at North Shore. I was admitted with IV antibiotics and a morphine drip. Step 1 to a damaged lymph system.

In high school, and later college, I was a competitive fastpitch softball pitcher. I lived for the ball in my hand, dirt on my uniform, the smell of the grass, and the overall love of the game. It was my safe haven. During high school (age 15-17), I experienced minor swelling in my hand and arm that came and went after pitching. My speed decreased, ever so slightly, between my 10th and 12th grade years. We went to several physicians at Hospital for Special Surgery in Manhattan. They, again, thought we were crazy and they said the swelling was not a concern (they in fact did not think it existed). 
Flash forward. Freshman year of college (18): I was recruited to pitch at Lafayette College. Towards the end of my freshman year season, I tore a ligament in my right shoulder and subsequently underwent right shoulder surgery. We, again, went to the best: The surgeon for the New York Jets. I underwent surgery at Lenox Hill in Manhattan in July 2008. Before surgery, mom asked whether Lymphedema could be a possible complication. My surgeon completely discounted this question, and instead responded, “don’t worry I’ll have you back on the field in no time.” Eighteen and naive, my only concern being softball.
For months after the surgery, the swelling spread to my right hand, back, right shoulder, and right breast. Doctors initially attributed the swelling to the surgery. I underwent massages that almost made me throw up from pain. But, of course at the time, my objective and my physical therapist’s objective was to get me back on the field. Mom, again, asked my physical therapist about Lymphedema. His response was, “relax, mom, you worry too much, that’s a worst case scenario, Chris will be fine.”

Several months later, several doctors later, at nineteen, we went to the Children’s Hospital of Pennsylvania. I was ultimately diagnosed with Lymphedema. The diagnosing physician told me pitching was out of the question, my college softball career was over. Of course, I decided that was not happening and found one doctor, out of ten, who would “try” to help me back to the field. I lost my sophomore season, but returned for my junior and senior seasons. I really could not play much at all, and my abilities were significantly impacted, but at least I finished. It was not my fairytale ending, but it was the ending I was intended to have. My days were spent either in compression garments or mostly wrapped in bandages. My spare time was spent receiving MLD therapy. I shoved the emotional aspect of Lymphedema to the far recesses of my mind.

Even after my diagnosis, at age nineteen, there was little information on Lymphedema. My focus at the time was softball, when it should have been on the fact that Lymphedema was a life long disease without a cure.  

When I was diagnosed, they didn’t tell me that the emotional rollercoaster was as intense as the physical. Nor did they tell me my new compression garments would make me feel like someone was choking me from the inside. 

 They didn’t tell me that people would stare and ask idiotic questions, nor did they tell me that airport security would physically stop me, take me off the line, and treat me like a criminal. 

 They didn’t tell me it was okay to be angry and it was okay to have bad days. 

 They didn’t tell me that I would miss holding my husband’s hand and feeling skin to skin contact, and they didn’t tell me that people would think my glove was unsanitary. 

 They didn’t tell me that I would struggle being in the sun, watching my sister’s softball games, or walking outside. 

 They didn’t tell me that my hand and arm would feel like a bowling ball. 

 They didn’t tell me I would have trouble mixing cake batter, opening jars, cutting vegetables, and taking down the Christmas tree ornaments. 

 They didn’t tell me writing and typing would be difficult and my arm and hand would be fatigued. 

 They didn’t tell me I would struggle every day, and others would perceive me as weak and lazy.

How was it possible that the medical professionals knew so little about Lymphedema? They missed the warning signs. Deep down I do not fault them. Although, I would be lying if I said I did not hold any anger. Everyone makes mistakes, these doctors made them. They should have considered Lymphedema as a possibility. But, no one is perfect. I made my own mistake by waiting eight years to work through my diagnosis. As I read recently, “everyone has their own shit to shovel,” and this is mine.

A few years ago, Jimmy Kimmel and Josh Duhamel performed a parody about “The Man with the 132-Pound Scrotum.” They made fun of the way he carried himself, his daily life, and how he walked. They obviously made no reference to Lymphedema. This is what we deal with it…no awareness.

Today I ordered new gloves, sleeves, and an overnight garment. The overnight garment is about $800, sleeves $80-$90, and glove about $130. I’m fortunate enough to have an insurance company which covers Lymphedema, for now, after I reach my deductible. But, most do not have adequate insurance, and how long will pre-existing conditions be covered?  
Medical professionals are trained about Lymphedema for less than one day. Textbooks cover it in less than two pages. Why? Instead, people think people who have Lymphedema are fat, and have “let themselves go.” They do not see the struggle it is to wear the compression garments, to exercise while your body swells, the pain when the swelling is bad, and the emotional toll it takes on your mind as Lymphedema is disfiguring.
But, as I am only learning recently, there is a life WITH Lymphedema and it is hard, but it is beautiful. My husband, who is my rock, and I recently rescued our first puppy, Benson. For eight years I have been a shell, hiding my emotions. I went to law school and I’m a practicing attorney, yet the voice I had before Lymphedema was still missing. Benson, this beautiful puppy who was abandoned in Alabama, began to heal the broken part of me. I found myself falling in love with the outdoors again and realizing just how beautiful our world is. 

As I said, life with Lymphedema is hard, and most cannot understand, but it is beautiful and just as wonderful. You only get one life, so shovel your shit, and enjoy what life has to offer.

I hope my story can help some and raise some awareness for this disease. We deserve the awareness, we deserve readily available medical treatment, we deserve health insurance, and we deserve compassion, respect, and love. 

Happy Birthday in Heaven to Daddy 

On November 4th we celebrated Happy Birthday in Heaven to my Daddy, Pete! 🎉🎁🎈🎂 
This group, the blog, The Lymphedema Running Club, and my passion for advocacy and awareness were all inspired by and encouraged by him. It was all created in his honor in September 2015.  He had LE from 1974-2016. If you have a child or grandchild watching your Lymphedema journey, I’m that kid all grown up. 😊

My message today is be mindful that someone in your circle of influence is watching you fight this illness. Caregivers too. You never know how you will inspire them. 💫💫💫

In May of 1998, I had just graduated from college and moved to Houston, TX to start my first real job. I was driving down the Southwest freeway, and I saw a billboard with two legs that looked just like my Dad’s left leg. At that point, my right foot would swell at the ankle, just a little, but not much. On my way home, I did a u-turn under the freeway to pull over and write the phone number down. Remember the internet was not widespread back then and calling was still long-distance. 

When I got home that day, I called my parents and said “You are not going to believe this, but I think Dad has something called Lymphedema. I probably have it too if it’s hereditary.” Dad’s reaction “What the hell is that?” Lol They started firing all these questions at me, and I said I have no idea but let’s call and make an appointment tomorrow. 

He did CDT while staying with me for 8 weeks and reduced his leg by about 40%. I helped him wash and roll bandages just like I washed all his compression by hand when I was a kid. His cellulitis bouts also tapered off to almost none. The first #WrapItWednesday was born I guess. 😉

I wasn’t going to post but since there are so many people with LE less than 5 years here, I thought you would find hope from his story. Dad kept on living and never let Lymphedema stop him even in the 24 years he went without diagnosis. Don’t let it stop you. 😎

I did this blog post last year. You can read more there. ❤️

Lymphie Sisters

On Wednesday November 9th, I met the most amazing woman and fellow Lymphie, Ranell Ross Oberlies and her husband Karl. Ranell first fought cancer in 1987, and she was back in Houston this week for her checkup. 
It was our first time meeting after a year of online friendship, and I instantly felt like we had known each other all our lives. We hugged, we laughed, and even cried. Thank you so much for the pleasure of your company, Ranell. Your story is incredible and you are such a warrior. 
She is in my prayers as she heads to see Dr. Nguyen in Dallas and then home to Mississippi later next week. 

Prayers for travel graces, Ranell.  

Beyond Limits: Endless Possibilites – Gisele


Gisele DeVarennes Aubé’s story is a testament to the strength and will of the human spirit. The following blog post was written by her and shared as a member of The Lymphedema Running Club for which I am an admin of on Facebook. She gave me permission to post it on this blog.

I hope you are as equally inspired as I am, if not more.

Read More

Living Life to the Fullest- Tina

Lymphie Strong Inspiration Group member, Tina Morrison Ciner, recently chaperoned a Relay For Life event. Tina has secondary LE in her arm. 

She shared her experience as follows:

Hey, I just chaperoned a Relay for Life event! I was there from 4:00 pm to 12:45 a.m. It was really cold & we walked laps to warm up.  Here is part of the team:

My daughter is the team captain in the turquoise shirt. My first Relay was my 5th anniversary of being cancer free. 

This year is my daughter’s last high school Relay & my 16th anniversary of being cancer free. Relay starts each event with a survivor lap & then caregivers & then the rest join in. The luminaria part of the night is very moving!

How incredibly courageous to survive cancer and learn to manage LE all while watching her daughter grow up!  You are amazing, Tina! 


Living Life to the Fullest – Josh

Yoga is probably one of the most universal forms of exercise and has proven to be very beneficial for many people with Lymphedema. 

Yoga in the park? You’ve seen it done in movies, and I’m sure on several yoga DVDs. Heck, it’s on my own personal bucket list. Well, this dude does it, Lymphedema dude Joshua

Here’s Joshua’s story: 

My name is Joshua Aka lymphedema dude I’m now 36 years I was diagnosed at 23 with primary Lymphedema. The swelling is from my toes up to my knee in my left leg. 

   I was seen by three doctors before a endocrinologist gave me my diagnosis. At the time all was told was the no cure, to wear compression and to prop my legs up when possible.

   I was also born with Noonan’s syndrome when I have found out that many NS patients develop lymphedema. 

   After my diagnosis I went through many years of self denial and depression. The result was I developed a life for unhealthy eating and inactivity naturally I gained weight. I found myself standing five foot and weighing 296lbs. 

After years of misteating my body I now though my continuing yoga practice, clean eating and self MLD I’m taking of myself & my LE. I now advocate for Lymphedema & Noonan’s syndrome awareness as well a healthy life style. 

Joshua has been such an inspiration to so many that when he takes a break from posting his daily Yoga poses, we all miss him! Where is Lymphedema Dude? Ha! 
He also recently completed his first 5K as part of The Lymphedema Running Club.

Lymphedema Dude is a trailblazer. Follow Josh on Instagram at lymphedema dude – You will be inspired!

Living Life to the Fullest – Jennifer

Resuming the segment of the blog that features everyday Lymphies defeating the odds, the next post is about Jennifer from Zürich, Switzerland. Lymphedema affects people worldwide, and it is great to get an international perspective. 

Here is Jennifer’s story in her own words:

“I am 26 years old and my LE was diagnosed when I was 12 years old. It’s primary. Have it in all toes, both feet, legs and now in my right butt cheek and in my back. The first doctor I went to had no clue about LE. He knew what it was, but he didn’t know how to treat it. All he said was, that I should lose weight. 

I wasn’t overweight, but I did what he said, because I was only a young girl and he was the doctor. I lost a lot of weight and that’s how my eating disorder began. I was so skinny (45kg) but absolutely nothing happend with my LE. My mom send me to rehab, because I refused to eat. In rehab I reached 53kg and could go back home. 

My mom found a great doctor for my LE (after a long search). The doctor recommended an LE therapist. I started therapy, 3 times a week MLD and wrapped 24/7 for a bit more than 7 weeks. It was so great. I was so grateful to get help. I got compression stockings, and I can’t imagine my life without them. I’m still fighting against my eating disorder, but I have it under control. The therapists said that that would also be a lifelong fight. I have an appointment in June ’16 to talk about LE surgery. I’ll see if that works for me. I see LE no longer as my enemy, it’s part of my body and I learned to see it as a challenge and a mission to spread awareness!” – Jennifer MacNamara 

Jennifer joined the Lymphie Strong Inspiration Group on April 8, 2016 and has inspired so many with her enthusiasm and positive outlook on life. Thank you for sharing your story and journey with us, Jennifer. 

Today I completed my personal 5k training.  This is about the 3rd consecutive weekend I have done this. In continuation of my posts related to Lymphies who live their lives to the fullest with LE, I have to share my personal motivation.

To my family and friends, it may seem like I just took up jogging/walking out of the blue.  I mean the last time I ran track was 8th grade.  It was more for the participation, as I wasn’t very good. Seriously, I was mediocre at best.

Over the summer beginning in June, I met a fantastic group of people in an on-line support group.  One of them was a woman named, Karen. I was on a number of threads with Karen discussing various aspects of Lymphedema, and soon I learned that she had primary bilateral lower extremity just like me.  I was initially impressed by the level of knowledge she had on LE. Later she posted a picture that would forever change my attitude about running and about primary bilateral LE – period.

Now up until this point, I had been interval jog/walk training for months but very nervous about taking my speed up to 4 mph in class.  I was also fearful of going any kind of long distance.

Karen obliterated my fears. Her 5K participation pictures just blew me away.  I was floored. Over the summer I gradually increased my max speed to 4 mph and then 5mph in August. Last week I trained doing 4 mph for 5 solid minutes and six sprints at 6mph for one minute each. Of course walking in between sets.

If I had not seen Karen’s post, who knows what potential I may have left untapped? FEAR was limiting my progress.
Thank you, Karen, for your inspiration and for showing the world what can be done in spite of LE.

Karen & friends in The Color Run Oct 17, 2015

Please watch the following video – Help Shrink Karen’s Leg.  You will be amazed.


Living Life to the Fullest – Karen

Keep Calm and Stay Lymphie Strong

This past Friday I drove down to my hometown  to see my Dad and help him with some of his personal affairs. He is getting ready for a big change and suffice it to say it has been a little stressful. By the end of the day, we miraculously  accomplished everything we set out to accomplish on this day trip.

I also finally had the opportunity to show him some parts of the blog, as well as some of the positive feedback that has been received.  He was in awe of all of you!  Just the sheer fact that people from 26 different countries have visited this site was moving for him.  The key message here is that we are all not alone.

He said, “For years I just had my own father as an example of how to live with Lymphedema, and he lived until he was 85. After he passed, I had no one that understood it except for you, my daughter. It is something I never wanted for you but it happened. We have to keep spreading the word. Tell everyone to Stay Strong.”

Stay tuned for his first blog post in early November, which is around his birthday.  In the meantime, I leave you with this Keep Calm poster to keep spreading awareness within your own circle of influence.

Keep Calm and Stay Lymphie Strong!