An Open Letter to the Doctor Who Changed My Life Forever

Less than fifteen minutes.  That is how long it took for you to steal my childhood and become the cataclysmic force that set everything in motion.  Years ago, I tucked your memory away in the far corners of my mind, and I chose, albeit unintentional, not to think of you.  But, life has a funny way of catching up with us, and you, a pediatrician nonetheless, have haunted my dreams for years.

You see, although it was not your intention, you became the monster of my dreams, one which manifested itself in indecision, trust issues, anxiety, and Post-Traumatic Stress.  It has taken time, and much soul-searching, but I have finally had enough and this is for you.  

In the last year, I have come to terms with my Lymphedema diagnosis itself: the pain, the disfigurement, the swelling, the life adjustments, and the complications.  However, I have learned there is a distinct difference between dealing with my Lymphedema diagnosis and dealing with the pain and trauma of years of misdiagnoses, and of course, the one that started it all.  The wrecking ball to a child’s innocence and the blown tire to a crash course of events.

You have become the nightmare that has plagued my dreams, but not just that, you have crept into every one of my waking moments.  I am ready to say good-bye to you once and for all.  But, you probably do not even remember me, correct?  Why would you?  It was less than fifteen minutes.

Let me remind you who I am.  My name is Christine Hilcken.  To family and friends- I go by Chrissy.  I am a 28 year-old woman who is happily married to my high school sweetheart.  We have a furry son named Benson and we own a home on Long Island.

When I was younger, my primary care physician was affiliated with Northwell.  You were a physician in the same practice.  When I was 14 years-old, I developed a contact dermatitis on both hands which escalated quickly into an infection.  My mom, who was a registered nurse, took me to my primary care physician’s office.  However, she happened to be out of town.  You were the covering physician.

Recently, I was asked to return to that day and to explain to someone what I remembered.  You see, I have not allowed myself to truly think about it because it was too painful.  Once I did, I realized how vividly I remembered that day.

Again, I was 14 years-old and had an appointment with you between late morning and early afternoon.  I remember I was wearing sweatpants because they were the easiest to take on and off without use of my hands.  Nor could I do my own hair, and thus, it was dirty and disheveled.  Mom and I sat in the waiting room for what seemed like an eternity to a 14 year-old who was in pain.  At that point, the pain was enough to produce tears, and my hands were red, slightly swollen, warm, and small blisters had formed.  My symptoms were escalating at an alarming rate.

The nurse called my name and I remember it hurt to move too quickly and I had to make sure not to use my hands.  We walked down the hallway and passed multiple examination rooms.  To be more specific, there were doctor’s offices to my left, and examination rooms along the back wall and to the right.  We walked straight ahead and slightly to the right and entered the examination room.

You came into the room approximately 15 to 20 minutes later.  I should have known from the moment we met that you would be my undoing, but I was 14 years-old and naïve.  To that end, I do not believe that you were unqualified or lacking intelligence, but you were arrogant, rude, and lacked any decent bed-side manners.

From the moment Mom and I started to speak you started to dismiss us.  We told you that I could not use my hands, and I could not bend my fingers.  We told you that my hands were itchy, and they were starting to burn.  We told you that the blisters, although small, were started to fill with fluid.  We told you that we were nervous because my symptoms had quickly worsened.

Deep down I understand that your actions were not intentional, but nonetheless, you dismissed us.  You invalidated our complaints, and told us that you did not believe it was that bad.  You told us to put some ointment on my hands and it would heal.  You were arrogant, rude, and dismissed every complaint made to you.  In fact, you acted like our mere presence was a bother to you, and you implied that I was crazy and my mother was an intention seeking drug addict.  Honestly, looking back, I am shocked you did not laugh in our face.  This all occurred in less than 15 minutes.

I vividly remember the moment you left the room.  I looked at my mother and I cried.  I cried for your inability to help me, for the pain, for the hopelessness I felt, for the loneliness, and most of all, for not being believed.  We returned home, but in the next few hours, my symptoms had escalated exponentially.

That night, my cousin was sleeping over.  We had been eating dinner downstairs at my Nana’s house.  But, by dinner, I could no longer feed myself, and I remember my tears falling into my plate.  My hands were incapable of holding a knife or fork.  Nor could I use them to open the door to go upstairs.  We tried to watch a movie that night to no avail.  In the middle of a sleepless night, I woke my mother in tears and asked her for help.

I was admitted to the Emergency Room with a severe cellulitis infection in both hands, but my right hand was worse.  The Emergency Room physician insinuated that my mother had waited too long to bring me to the hospital.  Can you believe that?  She brought me to you, a pediatrician, and she is the one who is treated as a neglectful mother.  In fact, she is the one who has had to carry around that guilt to this day.  Yet, you have no idea that your actions had consequences.  How is that fair?

By the time I was admitted, my hands felt like they were engulfed in flames, and the blisters were engorged with fluid.  My hands were red, hot to touch, and swollen.  It took two rounds of morphine before the pain even began to subside.  I remember the nurse smiling at me and saying, “Honey, you must have been in pain.”  With around the clock I.V. antibiotics, my hands started to return to normal a couple days later.  But, the damage was done.  You see, your failure to diagnose and treat, resulted in my compromised lymphatic system and future nerve damage.  After suffering from a compromised lymphatic system, subsequent swelling, and a shoulder surgery, I developed Lymphedema, an incurable and disfiguring disease.

For years, I thought should I have said more?  Did I not say enough?  Did I not cry enough?  Did you think I was crazy?  Why did you not help me?  Were you not a pediatrician?  Was your job not to take care of children and treat them?  What did I do wrong that day?  What did I do to deserve your cold treatment?

Today, I can finally admit that I did nothing wrong that day, nor did my parents.  You, my pediatrician, failed in every sense of the way.  Today, the 28 year-old adult, knows you made a mistake and that sometimes those in the medical field make mistakes.  The 28 year-old adult forgives you.  But, the 14 year-old, the girl you threw aside like rotting garbage, she has been broken and alone for a long time.  She has had a very difficult time forgiving you.  She is confused, rejected, and inconsolable.

That fourteen year old girl knows that you failed.  You failed the medical system, you failed future Lymphedema patients, you failed her parents, and you failed her that day.  You failed.

It appears I am not the only one who has felt this way.  I read your reviews.  A couple of them sound like something I would have written 14 years ago.  They characterize you as arrogant and rude.  Sound familiar?

What do I want to say to you now?  LISTEN.  Please, LISTEN.  You are a pediatrician and you are responsible for the children who come to you for help.  There are even some families that appear very fond of you.  You must have done something right for them.  I thank you for that.

But, if you listened to me that day, and heard what I was saying, you would have understood.  You would have understood that I was in pain and I was scared.  If you stopped for a minute, you would have possibly thought about the ramifications of your actions.  You would have considered the mere possibility that this would escalate far quicker than anyone thought.  Or maybe, you would have told me to return in a few hours if symptoms persisted.  Instead, you rejected me.

Did you know back then that cellulitis infections could pose a detrimental threat to the lymphatic system?  Did you know what Lymphedema was?  Did you know that cellulitis and Lymphedema are two peas in a pod?  Did any of these thoughts even cross your mind?  Were you worried for me?  Were you confident in your decision?  Did you even care about the outcome?

The 28 year-old woman writing this forgives you.  People make mistakes.  I have made mistakes.  I would hope if you read this that you would feel remorse and educate yourself.  However, the 14 year-old girl has not forgiven you yet.  Instead, the 28 year-old woman is imagining placing her arms around that 14 year-old and telling her it is okay.  That 14 year-old is hugging her mother tight.  She is trying to heal.

You see, that misdiagnosis changed her life forever.  That misdiagnosis was the beginning of the end of her softball career before it even began.  That misdiagnosis was the beginning of a life sentence with Lymphedema.  Your actions in less than fifteen minutes changed the course of that 14-year old girl’s life forever.  For that, she has a hard time forgiving you.  For that, a part of her hates you with every fiber of her being.

In the future, I would ask that you and others stop and listen to your patients.  Hear what they are saying.  I know it is hard, but try not to judge them.  They are frightened, alone, and they do not understand medicine the way you do.  If they did, they would be doctors.  But, they did go to you for help, and I hope that you help them.  I hope that you will heal them.  They deserve that much from a pediatrician.

For me, I have said my piece.  You hurt me in ways I did not believe possible.  You set into motion a sequence of events that none of us could stop.  You stole my childhood in less than fifteen minutes.  You made me believe that I was crazy for years.  You made me doubt medicine, and you made me have trust issues.  You broke me.

On the other hand, thank you.  Thank you for making me stronger.  Thank you for helping me realize that I can tackle anything thrown my way.  It is not how I would have wanted to learn this, but I will take it.  Thank you for making me realize that everyone is not infallible.  Thank you for making me see that everyone makes mistakes.

I will work on ultimately forgiving you.  But, I will never forget.  You see, the pain, both literally and figuratively, for me will never go away.  You will continue your life and treat others.  You will probably never read this or know the level of pain you have caused me and my family.  But, despite this, I will be stronger without your help.

I hope that you have become a better doctor, and a better person.  I wish you well.  I am closing this chapter of my life, and I am going to work on saying good-bye to you forever.  I am not going to allow your face to haunt me any longer.



Your bitter ex-patient







Terror and Uncertainty Masked by a Smile

Behind my clear crystal blue eyes and my gleeful smile, you did not see the pure terror I was feeling, my mind that was in turmoil unraveling at the seams, my heart hammering against my chest, my lungs working harder than necessary, my pulse racing a mile a minute, or the indecision plaguing me and causing me to lose focus.

If you saw me Monday morning, I looked normal.  I arrived at work and went to work almost immediately.  I said hello to people and carried on normal conversations.  Unless you spoke with me, you probably did not know that I had spent the morning on the phone with my husband, mother, and physician trying to determine when and if I had to go to the Emergency Room for the brewing cellulitis infection in my finger.

Until this past Monday, I had been fortunate enough that I had not been hospitalized for a cellulitis infection since my initial hospitalization when I was thirteen.  This had been no easy feat.  For the last eight years, I practiced proper skin care, using lotion and Neosporin when necessary, and I kept prescribed oral antibiotics in the house in case a suspected cellulitis infection reared its ugly head and warranted medical intervention.

Unfortunately, as you can assume, my lucky streak came to an end this week when I was hospitalized overnight for a cellulitis infection in my middle finger on my “lymphie hand.”

Last Monday started off like any other typical Monday.  I woke up, showered, and dressed for work.  Before leaving for work, I did not notice anything unusual with my right hand or fingers.

While driving to work, which is only 25 minutes away, I noticed that my middle finger was suddenly very red, swollen, warm, and painful to touch.  What was barely noticeable when I left my house, was suddenly very uncomfortable and becoming painful.

When I arrived at work, I called my physician who treats my Lymphedema.  We discussed my options:  Emergency Room or prescription oral antibiotics.  But, she wanted me to go to the Emergency Room immediately to be seen.  I, on the other hand, was stubborn and did not want to leave work.

Over the next thirty minutes, a metaphorical fog had descended, which clogged my ability to think, reason, and make sense of the situation.  I was unable to focus on anything except for the cellulitis infection.

What if I did not go to the Emergency Room and the infection progressed?  What if I went and they laughed at me because it is a small infection?  What if I did not go and the infection caused my Lymphedema to worsen?  What if I went and did not finish my work?  What if I did not go, the infection escalated, and I became septic?  What if I went and I wasted my time?  What if I did not go, the infection worsened, and my arm or hand had to be amputated?  Although it seems dramatic, these were all possible outcomes.

I went back and forth in my head replaying my options until I was nauseated and ready to vomit.  Finally, I spoke to my husband, my mother, and a colleague.  But, by the time I finished speaking with them, I realized that my cellulitis infection was progressing.  It was no longer at the top of my finger.  Instead, my finger was more swollen and painful, it was getting hotter by the minute, and it was spreading farther down my finger.

I ultimately made the decision to go to the Emergency Room.  If they laughed at me, they laughed at me.

You see, a cellulitis infection for a non-Lymphedema patient can be a serious medical condition, but for a Lymphedema patient, the smallest case of cellulitis is our worst nightmare.

Here is some background information regarding the correlation between cellulitis and Lymphedema:

According to the National Institute of Health, the lymphatic system is a network of “tissues and organs that produce, store, and carry white blood cells that fight infections and other diseases.”  The lymphatic vessels carry lymph and white blood cells.  “Lymph travels around the body through a network of vessels in much the same way that blood travels around the body through the blood vessels.  Whereas the blood carries nutrients and other substances into our tissues, the lymph vessels drain fluid from the tissues and transport it to the lymph nodes.  These small gland-like masses of tissue filter out and destroy bacteria and other harmful substances.  The bigger lymph vessels then carry the cleaned fluid back into the vein called the superior vena cava, where it enters the blood stream.”

According to the National Lymphedema Network, the lymph fluid in a Lymphedema patient with a compromised lymphatic system, becomes “trapped or ‘stuck’ without a drainage pathway.”  Additionally, the “lymph nodes (which help fight infections) are compromised or missing in most patients with lymphedema.”  Since lymph fluid is “a favorable environment for the growth of bacteria,” infections can often escalate rapidly and “can be severe by the time they are detected.”

Cellulitis is a bacterial skin infection, which can be quite serious, and even life-threatening.  It is often associated with swelling, redness, and pain in the infected area with skin that feels hot and tender to touch.  Left untreated, cellulitis can spread to other parts of an individual’s body, and it can enter the lymph nodes and bloodstream.

According to an article entitled Challenges of Cellulitis in a Lymphedematous Extremity: A Case Report, the stagnation of lymph in a Lymphedema patient “limits the clearance of bacteria.”  Since Lymphedema patients are unable to properly combat bacterial infections, they “experience prolonged bouts of cellulitis with longer and more intense systemic inflammatory responses,” which “in turn, worsens swelling and adds further damage to their lymphatic system placing the patient in a vicious cycle.”

Pure terror is the only way to characterize the emotional response which occurs to a Lymphedema patient when they suspect they may have cellulitis.  How long do I have before it progresses?  Can I wait and try oral antibiotics?  Do I need intravenous antibiotics?  Will the hospital believe me?  Will the hospital staff even know what Lymphedema is?  Will the hospital staff even understand the correlation between Lymphedema and cellulitis?

On Monday, I was fortunate enough to encounter several medical professionals who knew and understood the correlation between Lymphedema and cellulitis.  From the moment I walked into triage, the staff validated my concerns and treated me with the utmost respect.  Ultimately, we decided the best course of action was to keep me overnight with intravenous antibiotics.  Before I was discharged, I was able to have three rounds of antibiotics administered.  Upon discharge, I was given a prescription for oral antibiotics, which I am still taking.

But, the question of the week: Did I really need to go to the Emergency Room?  I truly believe I did.  After each round of intravenous antibiotics, my finger immediately became less red and less swollen.  However, hours later, the redness, swelling, and heat would return with a vengeance.  This cycle persisted for a couple of days, but slowly the antibiotics began to win.

For Lymphedema patients, cellulitis is frightening and unnerving.  It can also be life-threatening.

As I am learning, it is not something to mess around with at all.  If you suspect that you have an infection, it requires prompt medical attention before it worsens.

As there is a lack of awareness surrounding Lymphedema in the medical community, you may need to advocate for yourself.  Do not be afraid to find your voice and use it.  It just may save your life.



Connor, Matthew Pierce, and Richard Gamelli. “Challenges of Cellulitis in a Lymphedematous Extremity: A Case Report.” Cases Journal 2 (2009): 9377.PMC. Web. 30 Apr. 2017.


At Some Point, Don’t We All Feel Like Grizabella, the “Glamour Cat”?

Last night, Tyler and I were fortunate enough to see the West Hollow Middle School’s production of CATS, the broadway musical.  My cousin, Christopher, was performing as Macavity, and what more can I say, except that the entire cast was absolute perfection!

Anyway, you are probably wondering what the point of this blog post is?  Well, CATS, the broadway musical, has always held a special place in my heart.  It was one of the first broadway musicals that I ever went to when it was originally on broadway, and because we knew one of the actors, I was fortunate enough to be taken behind the scenes, and even had my face painted like one of the actors.

The song, Memory, from the musical CATS has also held a special place in my heart.  But, while I sat in the audience last night, I realized that my experience with a chronic illness, such as Lymphedema, left me feeling very much like Grizabella, the “Glamour Cat.”

For those unfamiliar with Grizabella, let me introduce you to her character.  Throughout the play she is portrayed as an elderly cat, weathered by age and life, which has left her nearly unrecognizable to the cat she once was before.  Throughout the play, the other cats are repulsed by Grizabella.  They do not touch or welcome her around, but rather, they shun her.  But, at the end of the play, Grizabella sings the song “Memory,” and is ultimately chosen by Old Deuteronomy to be “reborn.”  It is at this time, that the other cats start to accept, welcome, and embrace her as one of their own.

The lyrics to “Memory,” so profound and devastatingly beautiful, reduced me to tears last night.  I was Grizabella, the “Glamour Cat,” and had been for many years.

Below are the lyrics, and my own interpretation, which I believe my fellow Lymphies can relate to, as well as others suffering from chronic illnesses.

“Midnight not a sound from the pavement
Has the moon lost her memory?
She is smiling alone
In the lamplight
The withered leaves collect at my feet
And the wind begins to moan

Memory all alone in the moonlight
I can smile at the old days
I was beautiful then
I remember
The time I knew what happiness was
Let the memory live again

Every street lamp
Seems to beat a fatalistic warning
Someone mutters at the street lamp gutters
And soon it will be morning

Daylight I must wait for the sunrise
I must think of a new life
And I mustn’t give in
When the dawn comes
Tonight will be a memory too
And a new day will begin

Burnt out ends of smoky days
The stale cold smell of morning
The street lamp dies, another night is over
Another day is dawning

Touch me it’s so easy to leave me
All alone with my memory
Of my days in the sun
If you touch me
You’ll understand what happiness is
Look a new day has begun”

When dealing with a chronic illness, such as Lymphedema, it can leave you feeling “lost” and leave you feeling like you are spiraling out of control.  It can also leave you feeling like you are in the ocean, while the waves crash down, without an anchor in the turbulent storm of life.  It is easy to fall into the rabbit hole with little energy or desire to climb back out.  It becomes easier to say, “What’s the point?”  It becomes easier to succumb to the life you have been unfairly dealt.

In the beginning, I felt just like Grizabella, weathered and aged by my diagnosis despite the fact that I was young and vibrant.  Each day was breaking me down until I did not recognize who I was looking at in the mirror.  Although I pushed everyone away after I was diagnosed, I like Grizabella, secretly longed for someone to touch me, to ground me, and to tell me that Lymphedema had not changed me.  I needed someone to tell me that I was still the same person I was before Lymphedema.  The world kept moving, time kept passing, and people’s lives eventually moved on, with or without me.  I like Grizabella, was trapped with my memories “of my days in the sun,” with only me left to rescue me.

However, although Grizabella was vulnerable, she was also a survivor.  Similarly to Grizabella, I remained hopeful that one day I would accept my diagnosis and thrive despite it.  Deep down, I knew that I could not let Lymphedema win, but rather, I had to fight it both emotionally and physically.  Similarly to Grizabella, I remained hopeful that at some point my diagnosis and the painful days of isolation, emotional fatigue, and physical pain and exhaustion, would be a distant memory, one that would cause me to grow and would shape me into the woman I would later become.  Although I felt broken down and beaten, I remained hopeful a new day would come, and with it, happiness and new memories to accompany my own treasured collection of memories from before Lymphedema.

I believe, in a way, we are all “Grizabella,” yearning and longing for someone to touch us, to feel our pain, and to validate our experiences.  But, as humans, we remain hopeful in the face of adversity.  Hopeful for new research, hopeful for a cure, and hopeful that no matter how dark the days ahead may be, there will always be a new day to come.

Last night, the beautiful lyrics of “Memory” brought me to tears in the audience.  I saw my broken and fragile self in the mirror when looking at Grizabella, but I also saw how far I have come since my diagnosis.  I saw the brave, strong, and hopeful woman sitting in the audience.  I know now that I am the same person I was before I was diagnosed, with more happiness and beautiful memories to last a lifetime, but I also have scars that have molded me into the woman I have become.

One of my best friends was sitting next to me last night in the audience.  At the end of the performance of “Memory,” she leaned over to me and said, “You have been reborn too.”  And, she was absolutely correct, I have been and you can be too.  We are all Grizabella, the “Glamour Cat,” which means we have the ability to remain hopeful, and we all have the ability to thrive despite our chronic illness, and we all have the ability to find happiness once again.






Radiant, Warm, Abundant Sunshine, or My Own Personal Torture Chamber

Hello everyone! I hope you all had a beautiful weekend, and if you were observing this week or weekend, I also hope you had a wonderful time.

On Sunday, I celebrated Easter with my family.  I knew we were projected to have a beautiful Sunday, with sunshine, warm weather, and clear skies.  But, I suppose I wasn’t completely ready to welcome summer yet.

For Lymphies, sunshine, warm weather, and humidity often mean increased sweating, swelling, discomfort, pain, and limited use of our affected limbs.  For me, personally, it means all of these things.

Yes.  Radiant, warm, and abundant sunshine is also my very own personal torture chamber.  

I woke up Sunday morning and the birds were chirping, my puppy, Benson, was ready to start the day, and I was excited to spend the whole day with my family.  I woke up wearing my Tribute, which for those who don’t know, is an overnight foam compression sleeve.  My friends call it my oven mitt, but to me, it is a perfect pillow fight weapon LOL.

Anyway, I woke up Sunday morning and took off my Tribute, and was excited to see that I could see my wrist bone! It was a good day.  However, I then realized how warm it was in our bedroom.

When we left the house at 9:30 A.M., it was already mid 70s.  I knew immediately that it was going to be a shock to my lymphatic system and an overall tough day, but nonetheless, I was determined to have a great day!

We went and spent time with my mother-in-law in the morning, and then went to my aunt’s house in the afternoon.  Throughout the day, I played ball outside with Benson at least six times, and then spent time outside with family.

From the moment I walked outside, the swelling started.  I wear a black compression sleeve and glove, which some question as black often attracts the heat.  But, to me, black is fashionable, slimming, and makes me feel “less different.”

By early afternoon, my fingers were bulging over the sides of the compression glove.  It was harder for me to bend my fingers and palm.  The elastic band under my armpit was beginning to irritate my skin.  My thumb, itself, had gone numb.  Finally, it became difficult to cut my own food.

As Lymphies, we struggle with the “should I go outside and enjoy what life has to offer, “or should I stay inside where my lymphie limb is safe.”

When I sat down to cut my food, I got frustrated and my eyes welled up with tears.  If this was a few years ago, this moment would have ruined my day and made me spiral into a cocoon of emotion.

Instead, I looked up and saw my beautiful family, including my godson playing with his new toys, my husband conversing with family, my mom sitting with me in understood and compassionate silence, my puppy eating a bully stick, and my 92 year old Nana enjoying a wonderful home-cooked Easter dinner outside of the nursing home.

Life was still beautiful and still enjoyable.  So, I struggled to eat dinner and I allowed myself to be frustrated.  But, then I piled up two pillows and elevated that lymphie arm of mine.  Elevation made the pain easier to manage, and luckily, a quick rain shower dropped the temperature outside, and I was able to sit outside in the late afternoon.

Later that night, I went on Facebook to one of my support groups and realized that I was not the only one having a “lymphie flare-up.”  Wow, did it feel good to know I wasn’t alone.  This is why I began this blog.  For anyone struggling, please know you aren’t alone.

We have our uphill battles to climb with Lymphedema.  In fact, anyone suffering with a chronic illness has those battles to climb.  But, when you climb to the top, the view is beautiful and worth the struggles you have to endure along the way.

For me, the swelling was worth seeing my family smile and laugh, seeing my Nana win the annual egg game, and seeing my puppy exhaust himself playing ball.  It. Was. All. Worth. It.

I hope your weekend was wonderful!  Until next time…xoxo

– Chrissy

The Quicksand of Life

Living with a chronic illness, such as Lymphedema, adds another layer of daily emotional and physical struggles.  If you let it, it can frustrate, trap, infuriate, defeat, drown, and bring you down down to your knees, where each day you are fighting to breathe and fighting to escape it.

In a way, chronic illnesses, such as Lymphedema, remind me of “quicksand.”  I have consistently compared my own diagnosis of Lymphedema to “quicksand.”  According to the Merriam-Webster dictionary, “quicksand” is defined as “something that entraps or frustrates.”  However, ironically, according to a National Geographic News article, “a person moving around in quicksand will never go all the way under.”  After living with a chronic illness for eight years now, I truly believe that similarly to “quicksand,” if people continue to fight against their chronic illness, continue to seek treatment, continue to learn more about their chronic illness, and continue, beyond everything, to succeed in spite of their chronic illness, they, too, “will never go all the way under.”

I did not come to this “lymphie free” mentality overnight.  Nor did I drink the “kool-aid.”  In fact, I am not an overly optimistic and happy person, and I am most certainly not your typical “rah-rah” individual.  Rather, since I was young, I have been compared to Eeyore, a character who will forever be near and dear to my heart.  A series of events, books, songs, and life changes brought me to this “lymphie free” mentality, which I plan on discussing in length in a future blog post.  But, for now, let me share with you my diagnosis, and hopefully you will find some parallels to your own stories, and realize that you are not alone in this great big “chronic illness” world.

Here, we go!  My Lymphedema diagnosis can only truly be explained by a series of unfortunate events, and years of missed or misdiagnoses.  Or, at least, that is how I perceive it!  But, as I am only recently learning, this was just the life that I was intended to have (The Life Intended by Kristin Harmel:  An eye-opening novel which I will hopefully discuss in a future blog post, but highly recommend!).

When I was thirteen, I was hospitalized with a severe cellulitis infection in both hands, my right hand being far worse than my left.  Cellulitis infection, Chrissy?  Sure, easy!  Just go to your doctor or the hospital and they will surely give you the proper medication!  WRONG.

In the beginning, the cellulitis infection reared its ugly head with redness, pain, discomfort, swelling, and small bumps.  Despite it not being a full-blown infection just yet, it nonetheless warranted immediate medical attention.  In a weird twist of unlucky fate, my long-time primary care physician was out-of-town.  My mom, a pediatric nurse, brought me to the covering physician affiliated with North Shore University Hospital.  We waited in the waiting room for easily over an hour, or so I thought (hey I was thirteen!).  Anyway, once in the examination room, Dr. X examined my hands for LESS than five minutes.  Why, thank you Dr. X for generously giving us five minutes of your time!  Dr. X dismissed our concerns that this was a cellulitis infection, but rather, he thought my mom was looking for narcotics.  Anyway, I was sent home and remember that night vividly.

My cousin was sleeping over that night.  We were downstairs eating dinner.  But, at that point, only a few hours after my appointment with Dr. X, things had progressed badly.  I was unable to feed myself and unable to use or bend my hands and fingers.  Tears were silently cascading down my face.  Of course, my cousin probably thought I was a major buzzkill!  Within a few hours, the swelling had become severe, the pain turned into agony, and the blisters had begun to fill with fluid.  Not only was I incapable of feeding myself, but I was unable to open doors and unable to change my clothes.  We tried to watch a movie, relax, and eventually my cousin fell asleep.  But, for me, sleep never came.  My hands felt like they were engulfed in flames and the tears eventually turned to sobs.  Later, I would learn that the blinding burning searing pain was likely nerve damage.  I remember creeping into my mom’s bedroom in the middle of the night and asking her for help.  She immediately took me to the Emergency Room at North Shore University Hospital.  Within minutes, I was admitted to the hospital with morphine and antibiotics prescribed intravenously.  The attending physician questioned my mom and “why she waited so long to bring me in.”  Unfortunately, these questions plague her still today, despite my best efforts to explain that she took me to Dr. X for help and the infection escalated faster than we ever could have imagined.

Little did we know, but that cellulitis infection would severely compromise my lymphatic system.  For those who do not know, the lymphatic system is a part of the circulatory system and is comprised of lymphatic vessels which carry lymph, a clear fluid, towards the heart.

Quickly, to fill you in.  I was a competitive softball pitcher growing up.  I fell in love with the game and never looked back.  After the cellulitis infection, and over the next four years, we noticed small changes in my right hand and arm, including fatigue, minor swelling, decreased pitching speed, and I was experiencing what can only be described as “electrical charges” in my hand.  We went to several different physicians regarding these symptoms, including those physicians at Hospital for Special Surgery who specialized in Sports Medicine.  Obviously, at the time, we thought it might have been sports-related.  After examinations, these doctors also dismissed our concerns.  My mom, being a nurse, inquired as to Lymphedema.  I remember the faces of the doctors looking at us, smiling, chuckling, and then dismissing us.  But, they were doctors, and I chose to believe them.  Everything was okay, right?

After high school, I was recruited to play softball at Lafayette College, a Division 1 program.  During the summer after my freshman year, I underwent right shoulder arthroscopic surgery to stabilize the glenohumeral ligament capsule.  Again, mom took me to the best.  We went to an orthopedic surgeon at Lenox Hill, who also happened to be the lead surgeon for the New York Jets.  Before surgery, my mom mentioned my previous bouts of swelling and asked my surgeon about post-operative complications, including Lymphedema.  He, also, shrugged her off and dismissed her concerns.  The response to me: “Don’t worry Chris, you’ll be on the field in no time and as good as new.”

In the months following my surgery, I experienced swelling that spread from my right arm and hand to my right breast and back.  The swelling would double my arm in size and cause me to have a hump on my right shoulder blade.  At that point, I was receiving aggressive physical therapy aimed at returning me to the field in time for the next season.  The doctors attributed any swelling to my shoulder surgery.  To alleviate the swelling, I underwent massages performed by my physical therapist, which were so painful they reduced me to vomiting.  Again, my mom asked my physical therapist about Lymphedema.  The response: “Relax mom, you worry too much, that is a worst case scenario…Chris will be fine”  I have lost track at this point how many people have dismissed our concerns and told us “not to worry,” despite my mom’s pointed questions about Lymphedema.

When the swelling would not subside, my mom took me to the Children’s Hospital of Philadelphia, which had a Lymphedema clinic.  I was diagnosed in early 2009, six years after my original cellulitis infection.  However, to most Lymphedema patients, six years for a diagnosis is fantastic.

When I was diagnosed, the doctor, again, spent at most ten minutes with us, but this was surely enough time for her to completely alter my world as I knew it.

Have you ever felt your world turn upside down?  Have you ever felt like you were drowning below a layer of ice, with a view of the world above, but no escape from the frozen depths of the water below? Have you ever imagined yourself screaming and pulling your hair out, only to realize you are barely breathing and you have not made a sound.  Have you ever felt so scared of the unknown that you do not know what to do?  Have you ever felt like you were hit by a truck, rolled over in the car several times, and then propelled through the windshield?  

If you have been diagnosed with Lymphedema, or any chronic illness, or life-altering illness, I can imagine you have felt something similar.

I remember the doctor telling me that playing softball, especially pitching, was out of the question.  I remember the doctor telling me running and weight training, as well as carrying items more than ten pounds on my affected limb, were out of the question.  I remember waiting for the valet to bring our car around to the front of the hospital.  I remember the silent drive back from the hospital to my dorm at Lafayette College.  I remember trying not to break down and trying to be strong in front of my mom and later my friends.

Mostly, I remember my world being torn apart in front of my eyes, like the seams being ripped off of a softball, with only me as a bystander observing it happen.  I remember trying to breathe, but feeling an immense pressure in my chest.  I remember the world spinning before me making me nauseous.  I remember locking myself in the closet and crying with abandon.

Over the next few weeks, I found a Lymphedema therapist at a local hospital by my school and I was fitted for those really fancy and stylish things we call compression garments (said no one ever!).  I remember vividly the first day I wore them.  My mom had come to visit, as she did often after my diagnosis, and we went to the local diner.  For those who are unaware, compression garments are fitted tightly around the affected limb, to prevent the progression of Lymphedema, maintain, and push the fluid out of the affected limb.  I wear a compression glove around my hand and compression sleeve.  That day, I remember feeling the compression around my hand and arm suffocating the little life I had left.  It felt like it was suffocating my dreams and passions all at once.  I felt the stares from people at the diner, and later people on campus.  What more could you take from me Lymphedema?  I felt like a fraction of the person I used to be.  I was defeated, discouraged, broken, fragile, worthless, and damaged.  I felt like a mirror fractured into a million tiny pieces, or like Humpty Dumpty after he fell off the wall.  I looked at myself in the mirror, and asked, “who are you and where is Chrissy?”

Now, I know, I was none of those things I felt, but when you are deep in your rabbit hole, it is difficult to see through your own warped emotional state.  Always remember, you are not what this disease makes you think you are.  You are still you, but you may have to remind yourself a few times, and that is okay.

For years, I allowed Lymphedema to consume my life and to steal the little bits of “me” that I felt I had left.  Years later, while seeking counseling to grieve the Lymphedema diagnosis, I was dealt another blow, and diagnosed with Post-Traumatic Stress Disorder, as well as an anxiety disorder.  I have learned that after struggling with a chronic illness- this is normal.

Although I spend a significant amount of time in this blog post discussing my own story, I know that it certainly parallels many stories told by Lymphedema patients.  Lymphedema patients struggle being diagnosed, finding treatment, and even receiving medical coverage through their insurance companies.  Recently, I met a woman who waited thirty years for a proper Lymphedema diagnosis.  Through Facebook, I have heard countless stories from fellow lymphies who waited over twenty years to be diagnosed.  The lack of awareness surrounding Lymphedema in the medical community, as well as within our own communities, is astounding.

As I discussed at the start of this blog post, Lymphedema, and other chronic illnesses, can certainly feel like “quicksand.”  You may feel trapped with no way out.  I can tell you, that the “quicksand” moments become less frequent over time, but every now and then, they come, and they come in full force.  When that time comes, see it for what it is, and then keep moving, because as we now know, a person moving will never completely be pulled under in quicksand.  And, despite its best efforts, Lymphedema will not pull you completely under either so long as you do not allow it that power.

What those doctors did not know about me: “Momma did not raise no quitter.”  I was determined to make it back to the field, and I did.  And, only recently, I became determined to take back my life and claim it back from Lymphedema, and I did, but that my friends is for a future blog post.

I hope you can read this post and know you are not alone.  My mission is to raise awareness for this incurable and debilitating disease. In future blog posts, I hope to take you through my emotional and physical journey, and my daily struggles and triumphs, and hopefully in some way, with or without Lymphedema, you can relate.

Remember, don’t let the quicksand consume you.  Allow yourself those moments to cry, grieve, and stamp your feet, but keep fighting back, against all odds, because you deserve to find a way to live your life “lymphie free” too.

Beginning to Live Lymphie Free

Hi everyone!  My name is Chrissy and I was diagnosed with secondary Lymphedema in 2009.

Eight years.  It took eight years for me to grieve the diagnosis.  It took eight years to work through the five stages of grief several times.  It took eight long years to accept “my new lymphie life,” and to start living, again, lymphie free. Finally, it took eight years for me to find my voice, and to rediscover the girl I left behind when I was diagnosed.

There is no secret to living “lymphie free.”  And I, in no way, have it figured out completely yet.  I have my good days and I have my bad days, which would break me completely if I allowed them to.  But, I think the term “lymphie free,” allows me to see the world in a different way.  It is a world where I do not allow Lymphedema to define me, and where I do not allow Lymphedema to control my life any longer.  It does not mean that I do not have symptoms, nor does it mean that I “pretend” I no longer have Lymphedema.  It is a mental state that I try to focus on to believe that I can live a full and empowering life despite my Lymphedema diagnosis.

I love to read and I love to write.  I have always found writing to be cathartic. I hope this blog can serve as a safe haven and resource for my fellow lymphies, and as a means to raise awareness for this disease.  Who knows, maybe no one will read it.  But, if one person finds this blog helpful, or learns a little more about Lymphedema, then I have done my job as a patient advocate.

I hope you will follow this blog and share your own stories and advice for others as well.

Live your life “lymphie free” and have no regrets.