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.