04.18.12
Posted in Uncategorized at 2:17 am by Administrator
Gift bags seem innocent. They are typically pretty, extremely functional and meticulously wrap presents, cute and quick. A gift bag broke my heart. It was purple with a cartoon woman on its front—a cartoon woman in a polka dot dress, who was pregnant.
In many ways Tuesdays this year has torture. Nearly nine months ago, two women I share my pediatric office with announced they were each pregnant with their first child. They have belly bloomed as I have deteriorated. They rub their belly’s with pride of the life inside, I rub mine with pain. In motherhood bliss they plan nurseries, maternity leaves and birthing classes. I try to free up time for a lung deflating and an abdominal repair. Its been nine months of nausea, cravings and breast pain discussions, all of which I entertained listening to. The world can’t stop just because much of my life has. I’ve heard about how difficult it is to swallow prenatal vitamins and how hard it is to simply walk the two flights of stairs to pick up the next patient. Most of the time I’ve greeted it all with a smile, downing my horse pill herbal supplements that manage my pain and then tooling up the stairs despite crippling back and rib pain. I looked at some baby girl ultrasounds just a day after staring at an ultrasound screen that revealed a large diseased mass in my own pelvis.
I’ve ignored that for the better part of the last 36 weeks the entire office has focused on the birth of these two babies. No one for a moment has given even a breath to my life altering issues. No one asks why I have stopped playing tennis, going out, or why each day I suffer more than the one before. We only discuss babies and pregnancy. Sometimes the gleeful hee-hee-hee and oh-its-so-amazing-to-give-life gets to be overwhelming. Sometimes bearing witness to one more ear to ear grinning person rubbing another’s belly ruins my entire day. Everyday I wonder if life will ever grow inside of me. If I will ever feel a fetus kick or hear a heartbeat.
Endometriosis has left an indelible mark on my life. It creates a black hole in my soul, leaving not just a lifetime of pain in its wake but a bottomless pit of dreams as well. I take it all in with a smile and speak for a generation of women with endometriosis. But, as I placed the cake I stayed up until midnight baking, that polka dot cartoon snuck up on me.
All at once everything endometriosis had taken from me stared at me in the face. It is likely I may not sit in the center of the room and have people coo over me and throw onesies my way. I am alone. I face this disease alone. A general surgeon explained to me my pains are a non issue. The women around me seem indifferent to what the next few months of this battle may bring. I am unsure of proceeding surgically. I am out of non surgical options. And still my crazy world requires me to sit at a mandatory duel baby shower and pretend everything is normal.
There is nothing normal about being in medicine, able to help so many people around me, and unable to receive adequate care for myself. There is nothing normal about smiling through the pain so much, the pregnant lady asks you to carry the gifts to her car because she cannot notice the gash her baby shower made.
Feet from my own car, I stood in spring’s glow. I buckled over from the pain not in my pelvis, but deep in my heart. I dreamed of a full life, once. I’ve sat and watched it all disappear. The strong, bright, sparkly woman who conquered this disease with innovative physical therapy rehab and excision surgery is slowly vanishing. I have begged for help for nearly a year with only my closest friends hearing me.
Other women get bridal showers and big white dresses. They get maternity clothes and itsy bitsy booties. For some life is discussion about using green diapers or disposable ones. Women with endometriosis get presacral neurectomy discussions and a high end yoga pant collection designed to conceal bloating. We get a lifetime of pretending everything is fine while we cry ourselves to sleep when darkness falls. We did not plan on standing on the sidelines waving good bye to our fertility. For many there are no baskets filled with lambs and chicks in our futures.
Into the abyss of the unknown called life with endometriosis I drift. I know not what my future brings.
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03.11.12
Posted in Uncategorized at 10:37 pm by Administrator
The New York Public Library Lions and I have a strange relationship. Living in New Jersey, I have rare occasion to be in the very crowded nook of Manhattan where the lions reside. I neither work nor recreate on Fifth Avenue. From where I live, I think the whole east side of Manhattan shouldn’t exist just because it is difficult to get to rapidly. Yet, those stone lions greet me through all my ups and downs. They have become the gatekeepers of my life with endometriosis.
The two of them first roared to me just months after my initial surgery. They peered at me during my baptism to the world of the well. In the biggest gown I have ever worn, with uber high heels, blown out hair and all the personality to go with the look, I trundled up the stairs, past those lions for my first Blossom Ball. That night we celebrated life with endometriosis. I celebrated my own life with endometriosis. I made it through the darkest of times, moments of despair when all I had was pain. I found excision, paired it with a physical therapy rehabilitation program I developed and danced til dawn. Those lions glared at me like I was the craziest one at the party. I arrived in the endo world that night, like it or not, I have never looked back.
Too often we get stuck in the life of pain, distraught and surgeries to forget that we are a community of 176 million worldwide who for the first time are uniting to have our voices heard. I also celebrate that I have a name for my torturous pain. Diagnosis is power. I no longer suffer in anonymity. Diagnosis brings me the ability to truly go to war, to form a business to make life with endometriosis better for the masses, and to save what is left of my soul.
Donned in red, sparkling from head to toe, a refurbished Sallie walked by those lions once again for last year’s Blossom Ball. Nothing looked more like victory than me glamorized, fully healed from a second surgery, this time for an abdominal wall hernia. Sparks bounded from within and at last, I owned that night. I strutted my stuff as a healthy person, as a national qualifier in tennis, fully happy and at peace. Except endometriosis never laments in its quest to prevail. It is very sneaky, wrapping around your insides, creeping everywhere inside. As I shuffled past the lions at the end of the night, I felt an all too familiar stabbing in my umbilicus. The small amount of exudate on the inside of my ball gown was solely the precursor to a very long year. Thoses stone lions might have whimpered when I walked by them to leave. In that moment they could have roared, “Behold your future.”
Just a few short months later I sat beneath those lions during the hottest days of the summer crying. Eight doctors into another round of unbearable pain and my belly was distended, bloated and immeasurably painful. Unable to move, the pain seared through me as I tried desperately to complete a certification in pilates instruction at a world renowned teaching studio across from my lions. They were smirking at me, those lions. I wasn’t in my high heels. I didn’t have any make up on. I was just in my gym sweats trying to make my business a stronger refuge for women with pelvic pain. I was overwhelmed not only by the pain, but unfortunately by the ambiguity that life with endometriosis brings. General surgeon number three, while very compassionate, tried explaining to me that this was pathology, not a hernia. Underlying pathology requires an in depth solution. Maybe the heat made me delirious and encouraged my denial of impending surgery number three. There on the lion’s steps, a part of me still believed if I just found the right plan of attack I could find my groove again. As the tears flowed, the part of me that has lived this battle for so long knew the answer was going to land me in a surgical O.R.
When disease diagnosis and treatment is delayed for so very long, endometriosis has a chance to adhere and swallow everything. It makes long term, quality of life prognosis very hard to predict. I fight with all I have and still I will lose. Had I been diagnosed even a few years earlier, life may have been very different. My summer was spent off of the tennis court, endometriosis pains robbed me of my completion of my national title. If I want to be able to breathe, I no longer can rotate to my left making tennis a very hard sport to excel at. Picking up my dog is hard let alone max assisting lifting patients.
On a bright, sunny, winter day, I strolled past those lions again. This time to take my certification exam for pilates. By no means, has having endometriosis made my career path easy. Others put thousands of dollars of marketing into their practices. I put the thousands into my medical care. Some take time off to have a baby. I squeeze in patients between managing my own wellness. I heard some people are able to retire when they get older and have health problems. This has been a disease that has affected my life in my prime earning years. The costs of treatment alone will prevent my ability to retire when I am older. Traveling to conferences or even taking courses, events that should be seen as something that simply comes with professional responsibility, are financial luxuries. Additionally, certification typically involves a required lab component. These labs take their own unique toll on my endometriosis body, from pilates to a rectal manipulation course, life as a physical therapist is tough with endo. But, I push forth with my eye on the prize: Full certification in pilates from Pilates Academy International and in Womens Health from the America Physical Therapy Association. I do believe that what I can give to the world of endometriosis far surpasses the damage all these certifications may do to my own body. Either that or when my body has nothing left to give, owned by pain, my ego takes over and I must hold on to some semblance of being the physical therapist and person I was raised to be. I aced my pilates exam that winter day. If they could have those lions would have lifted their paws to high five me. I celebrate the small stuff.
I glanced out of the corner of my eyes as I whisked past my lions last week. The one on the left seemed sorry to see me. Almost like he knew where I was going. I was too late to stop and acknowledge where I was. I had an appointment to discuss my remaining fertility options before my next round of surgery begins. That lion didn’t see me as a physical therapy superstar, as a certified pilates instructor, or as Miss Sparkleplenty (or is it Dr Sparkleplenty?). I was a patient with a problem on my way to look for solutions which are hard to come by.
Now, it is time for the big show. Endometriosis Awareness Month brings the Endometriosis Foundation of America’s Blossom Ball. The lions expect the hair, the smile and the flash. I am almost as petrified as they are. The rollercoaster that is life with endometriosis has affected me greatly in the past year. I am just not physically able to push myself to the level I am used to. I am hoping the lions don’t recognize what the spanxs cannot cover. I hope they do not see the defeat that infiltrates my being. Every day life from the moment I shut off my alarm to the time I finally turn off facebook to go to bed is a struggle. I am wounded from within. My sparkle is fading.
Yet, I promise to walk past those lions twinkling as much as I can. I bought very glittery shoes for back up. For one night I will make an attempt to cover the distention, swelling, bloat and pain. The hair gets extra big, the heels get higher and I shine, if only for this night. I shine to celebrate the 176 million of us. Until I have no words I will shine for those that have had treatment, those that have not, and those who do not yet know what it is we fight for. If I listen quietly, perhaps as I pass, those lions may roar, “Next Year, Sallie, it all will be different!”
I hope, my stone little friends can keep that promise.
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12.22.11
Posted in Uncategorized at 2:18 am by Administrator
Two years ago I boarded a plane. As I stepped through security I left behind the tumultuous autumn that included a ruptured endometrioma, visits to seven different gynecologists, my mother’s battle with melanoma, and a four hour excision surgery for endometriosis. I was just days post op. Christmas jingles caroled overhead. I could feel the glee in the air. Winter signaled the rebirth of my future. The only evidence of the trauma that had been my life was a scar from a tiny incision.
I landed in Miami. It was a renaissance. It marked the first time I flew that I did not need to spend a day in bed when I landed, crippled by pain. The first morning I watched the sun crest over the horizon from a tennis court. My surgery gave me freedom to move on the court in ways I never could imagine. The rest of the vacation was spent on a surf board or at the beach or spending hours cooking homemade gluten, dairy, and soy free meals. I could stand to play or work without fatigue engulfing me. I came home truly a new woman. I skied. I plotted a plan for a new business. I loved. I laughed. I healed, inside and out.
Endometriosis let me go out and play. I switched from sneakers to stilettos, from sweats to sequined anything, from beige to candy apple red. I went from napping to exploring the world. I hit the beach, the pilates studio, and Vegas. But it seems endometriosis has other plans. It lurked in the shadows, in the strangest, darkest of places, proving as each day passes, that while I have embraced this new self and chosen to let go, endometriosis has not yet chosen to let go of me.
It looms over me. It covers what little is left of these days in a film of sticky gray ambiguity. It waits each 28 days to torment me from within. One day, it won’t wait 28 days, like before it will hold all days.
I have been quiet because endo has tried so very hard to steal my voice. I am afraid of what each month will bring. Last month it brought a trip to the emergency room and three days on a narcotic. A few months before that it brought an inability to turn to my left, bend down, or hold down food. Before that it brought a bleeding belly button. Regardless of cycle, endometriosis takes a piece of me every day.
I am overwhelmed. I am overwhelmed by pain. I am overwhelmed by fatigue. I am overwhelmed by the cost of treatments, surgical and otherwise. I am overwhelmed by the thought of missing more work, more social time, more of my life. I am overwhelmed by the thought that all of this makes me a disappointment. I am the girl who will not fail. I am the girl who rises above it all no matter what. This time, I am backed up against a wall, feeling trapped, feeling that I have nothing left to do. I am defeated. Endometriosis is winning, for now.
I vaguely remember what it was like to beat this demon. I remember feeling whole in my own skin. I remember the freedom and the power of a heart illuminating my life for the first time. I fought so very hard after an incisional hernia repair last Christmas Eve. In the moments I can find the strength, I vow to take the next round. I don’t lose.
I walk through life feeling in many ways as a failure. I started a business to manage endometriosis, infertility and pelvic pain. We provide hope and care for women around the world. Yet, my life is owned by my belly button. A freak complication lead to an umbilical hernia. I have now, apparently, developed umbilical endometriosis. It’s not a little pain, or a tad bit of swelling. It’s hanging- over- your- pants- swelling accompanied by all consuming, hardly breathing pain. Then, it sets every other latent pain pattern in my body off. I’ve somehow evolved to be a brilliant medical practitioner, whose life is dominated by a small simple thing like a belly button.
It took a troubled journey to teach me my true value in life. When I learned the lesson that I had a voice, a choice, and the ability to make a difference I thought the journey would be over. I would marry, settle down and have a family. By very definition a journey is endless. I peered out into the world of the well, and I loved it. Its fun to dance, to run, to annihilate an opponent on a tennis court. My excision surgery showed me the world could be all mine. The problem is, it all was simply a teaser.
This morning I boarded a plane again. Solace was my third acupuncture treatment of the week so I could catch my breath. My suitcase has more medicine and herbs in it than clothes. I fit in some sequins so people could tell I am still me. The only evidence of the trauma that has been my life is a scar from a tiny incision.
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10.09.11
Posted in Uncategorized at 10:26 pm by Administrator
Once a year I greet the first year physical students at my alma mater. I teach them words I never heard in physical therapy school. Words like pudendial neuralgia, pelvic floor dysfunction, painful bladder syndrome, and of course, I utter the one word no one ever mentioned during all of my education: endometriosis.
My medical education NEVER mentioned endometriosis. NEVER. I had to reach my absolute breaking point to learn about this disease. There were times I was pushed so far to the edge I still am traumatized from the experiences. I often wonder what if I had been trained to see the warning signs. In a breath life was silently stolen, before I even knew it. Good surgery, the best, the best PT, diet and acupuncture only mediated the symptoms. I sat in those seats, the same ones as my students and looked out into my new world of being a practitioner. I wish I had learned this term endometriosis as a student. Early diagnosis is crucial. Diagnosis and treatment would have come so much sooner. Each night I close my eyes wondering if tomorrow is the day I am truly well.
I stand and present the latest research on endometriosis. I take quite a stab at the stem cell theory (some might say I butcher it). I make sure my students understand what to look for, how to spot it and exactly why treatment may fail. I open my mind and my heart. I tell them my story.
Sixty students glean, literally and figuratively, at me. During a lecture detailing the definition, the signs and symptoms, the treatment, and the effects of endometriosis I pair it all with surgical film and pictures. Then at the end I reveal the added media is mine. All of it was downloaded from my own surgery. Among other things I put my own reconstructed ovaries on display. Reality TV:Sallie-style.
Last year I solemnly stood in front of them wearing business attire that fit for the first time since surgery. I heard my inner voice out loud for the first time. I spoke about what it was like to be a student just like they are and have a demon slowly swallowing my life minute by minute. I told them what it was like to be badgered by an advisory professor to stop whining about my back pain throughout my career. I spoke about how that advisor told me back pain was supposed to be relenting and remitting, meaning that sometimes you will have pain and sometimes you will not. I wish I had known back pain that coincides with your period is not normal.
I spoke of the one day, in my entire educational career which includes high school, college, two masters degrees and a doctorate, that I turned in a late paper because of my period. I covered and claimed I was overwhelmed with celebrating a religious holiday. In front of those students, each of whom were under the pressures of papers and exams every day, I told the truth. I had a moment where the cramping was too bad to finish my academic requirements. The professor listened to me that day and said that he remembered my mistake. I saw pity in his eyes. It cut through me. I still remember the emotional anguish of failing my own expectations. I missed a due date, my body backfired and instead of covering up as I always had, I gave in. Even years later, pity did not take the torment away.
My whole life can be like that now. Before excision surgery deadlines were creative interpretations of dates on a page. Sitting at a computer, in a chair with pressure on my seat was horrid. Aligning priorities with soul defining fatigue sometimes just didn’t happen. Even now, housework is never fully done, grocery shopping is completed in pieces and forget it, quick deadlines don’t happen. Sometimes I can’t decide if it’s the pain that creates this cycle or it’s a habit of living my life this way, adapted around pain that I expect each month.
A strange thing like a period gone awry can take every moment if you let it. Working as a physical therapist I have seen what life can be like when you are elderly. Somehow having a disease in my prime earning, social, and fertile years takes the blissfulness out of what should be my good ol’ days.
Every woman with endometriosis wishes they had a chance to go back and change the path of their disease. Twice on facebook, in less than a week, the question of what you would change regarding endometriosis was posted. We do not have to opportunity to go back. We only have the opportunity to be grateful for our futures, to create a future for the next generation to come. We are in a unique place in endometriosis management in that our voices are just beginning to have the power they deserve. It is our turn to grab our chance and take our turn.
This year I am truly afraid I will start my case study and burst out into tears. Last year things were actually pretty great. I was able to ski, surf, and play tennis. I lifted patients without pain, I felt like I had beaten endometriosis. One never is the victor when endo is involved. A week after the lecture (seen on youtube at drsalliept) I was overwhelmed by belly button pain. I needed more surgery, more rehab, and we still have no answer for this new all consuming pain. Endometriosis loves the shadows, it never truly disappears.
When I confirmed my lecture days, I forgot to count out my cycle and I will greet PT 14 on my heaviest day. For the past six months, I’ve had umbilical bleeding during my cycle. Covered in lidocaine patches and a small band-aid over my belly button, I will tell them about the pain that stopped my career, the agony that destroyed my relationships, the wonders proper treatment has brought me, the women I have had the privilege to meet, and about how diagnosis has taught me always to be true to my own voice.
I get a chance to tell them about a disease that changed the path of my very existence. For all of us. For all the women who wish that family members or colleagues would stop thinking they are “milking it” For all the women who go to bed at night without having a child. For all the women who have been told its all in their head. For all the partners that love a woman with endo and watch her struggle. For all the women who have lost their ability to be true to their voice. I speak for us all.
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07.26.11
Posted in Uncategorized at 5:49 pm by Administrator
I reach for my Thunderbolt before the alarm rings. My muscles are sore and tight. The sun is peaking through the blinds in my room as it begins to dance over the lagoon. I have three dogs to walk, feed and cuddle. My spine is stuck and creaky.I have at least twenty minutes of prep ahead of me. I need to apply lidocaine patches, take an advil, four different kinds of herbs and put something gluten, dairy and soy free in my stomach. It’s Tuesday. I need to be on the court in an hour. This is summer after all.
For the past eight years, since I have been able to call the score correctly, every Tuesday morning starts this way. I am not married. My business is a rollercoaster at best. My pain often controls my life. When this clinic began, I thought I’d have to miss sessions for maternity leave or honeymoon travels. Its turned out I only miss for continuing education classes for my physical therapy license and for surgical rehabs. In the summer the sun rises over the clay courts by the bay and I am on them. This is my routine. It centers me. Soon it will be fall and I will look at my watch and think that if it was August I’d be on the court. I’ll survive winter and in the spring on a Tuesday I’ll wake up and think just two more months and I will return to what is my normal. I’ve stood on those courts with bugs swarming, sun beating down, rain pelting me in the eyes, and pelvic nerves frayed by my disease. This routine provides the calm through the all the horror, devastation, and surgeries. It’s a reminder, when it seems easy to forget, that I am young and I am strong.
The group clinic starts early, hopefully before the heat sets in. I used to run before the hour and a half conditioning clinic in an effort to manage the weight gain that conjointly arose with the pain. For a while, I pretzeled myself between benches and walls, contorting my body around all the weird spasms in my back and my hip that no one had an answer for. After surgery last year, I finally stopped crying when the alarm signaled I had to skirt up and play. The day my pains were named, endometriosis, they were also excised. With my hip and back able to move, my heart had earned its sense of freedom. I threw out all my stained outfits, bought new ones and harvested the strength that only comes from enduring journey like mine. I stood atop the standings and took home my first ever winner’s mug.
There is no longer any peace on the court, either during my familiar Ladies Day clinic or at any other time. Scar tissue and adhesions in my belly button makes it nearly impossible for me to truly fire off a backhand. Rotational movement, despite hours and hours of highly specialized core strengthening, makes just existing insufferable. Yet, I do not put my racket down.
Years ago during my tenure as a collegiate swimmer, a coach pointed out that if I took off two days every time I got my period, I would be losing nearly 24 days of training a year. I was programmed to play through no matter what. Amazing because the two days of cramping the coach was yelling at me about turned out to be the tip of the iceberg. By definition, endometriosis means highly hormonal tissue migrates outside of the uterus and scars down everything. Only having cramps for two days a month, seems like the good old days. Despite two surgeries and fifteen years of immeasurable pain it is hard to allow myself a break. If pain was something I caved into, something I allowed to put me on the sidelines, than I would have crumbled for good by now, emotionally, financially, athletically, and socially. From the day I first swung a racket for the first time, all those years ago, I had endometriosis latching onto my pelvis. I played years of tournaments with undiagnosed Stage IV endo. I stood and served even as I ruptured an endometrioma. Recently, I clawed my way to a slot at USTA Mixed Doubles Nationals, playing a hard court season just weeks after a second surgery. With matches in 100 degree heat, adhesions, and endo ravaging my soul I wish I had gotten the memo that there is no prize for enduring the most. There are days I am so jealous of the women who just have to get themselves out on the court. Unfortunately, I have to carry myself and a disease through every point.
A good doubles player drags their opponents into a volley war- a battle at the net for control and ultimately the point. Point by point, winning is everything in a match. Get to the net first and you are on the offense. An offensive position makes it much easier to win. Get there second and it’s an uphill battle of defense. You’ve lost control. It’s harder to dictate play; it’s harder to dominate for the win.
Living with endometriosis is much like being in a volley war all the time, except, we cannot get there first. We never, even with the best surgical management, get to be on the offense. We simply play defense. Some play it a little more aggressively. Some go to war thinking they’ll be able to control the situation. After quality surgery they use dietary and herbal management. Others have a good physical therapist or acupuncturist on their side. We cross our fingers and try to avoid complications. But like in tennis, if you get there second, after the disease has grabbed a hold of you and taken its shot, we only can fight our hardest and hope to prevail.
Long ago endometriosis started this war. It took the first strike. I went into battle the moment I let someone cut me open. I went into that battle with someone I knew would fight this fight with all the fervor I would. My whole life was different after that first battle. I felt whole in my own skin for the first time in my adult life. But, like any war, it is the combative combination that determines the victor. I’m still waiting for my championship, the very fiber of my being is on the line. Up to net I go, not planning to lose.
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06.29.11
Posted in Uncategorized at 2:29 am by Administrator
A good friend of mine gave me a necklace out of the blue. On one side it says, “Believe” and on the other, “Like there’s endless possibilities”. It’s normally the kind of thing I would love. It fits the bill as the perfect little trinket to hang around my neck and push me through the summer season of tennis. It could stand as something to keep me going through the tough sets, but it could also double as a reminder to all the people around me on the courts who thought I was just faking for so long that I am here to tell the tale of the woman that survived. I can’t seem to bring myself to put it on.
I am simply overwhelmed each month with emotions, pain and mostly heartache. I believed in my own way, I had beaten the system. I managed to combine high quality surgery with physical therapy and acupuncture to create an all new life. On the harder days I am reminded that the system has beaten me. Pain washes over me drowning me in the sorrow and the loss the disease called endometriosis really brings. It stole all of my dreams. Yes, I believe in my new dreams, but I remember those original dreams. I still feel the tearing of those dreams from my soul. I never got what everyone else got, the happy moments that are supposed to fill your twenties and thirties. Things like first houses, weddings and pregnancies. I got a sprinkling of graduations and minor celebrations in between doctor’s visits, family emergencies, and surgeries. I do understand that many, many, many women have had tons more surgery that I have had. I believe each and every one of them paved the way for all the moments I am able to sparkle. But, the thought that in just a few weeks I am going for my third surgery, my second as a result of an incisional hernia, is daunting. I’ve been given a choice. To wait it out and see if I can suffer through it or to have it surgically removed. I have waited out my whole life and tried to live through it. I’m not sure I can give up summer, yet again.
I thought the first surgery was rough. That was until I went through the second one. Yes, the first was much more involved with much higher risks. I believe I was treated well before and after that one. I never questioned my safety, I never wondered about complications. I honestly was too sick to care. In those days I blindly trusted the surgeon (rightfully so). I made it through, took my disability time from work and healed my wounds. My heart never quite healed from the devastation but within six weeks I believed the worst was over. I all but laughed when another well known physician told me I was a “lifer”. I believed he was wrong. In those early weeks, I believed endo was something in my past. I started rehab for my abs and my pelvic floor. I learned to push my body further than I ever imagined it could go.
My initial complication set in soon after my first surgery, but I ignored it believing it was neuropathic pain. I waited until the hernia brought out the monster (one surgeon would argue, mobster) in me. I cried, screamed, and suffered through some of the worst pain imaginable when the hernia incarcerated a piece inside of it. I quietly checked into the hospital, believing that surgeon when he told me the repair was not really a big deal. It took three weeks for me to get off of Percocet. It took six before I was able to run. And, yes, when I finally took off and left it all in the dust I soared. I finally got to truly enjoy everything I had fought for. I did photo shoots, I surfed, I danced on boardwalks, I strutted my stuff, and I ignited my professional career. I felt that winning feeling I always believed was mine. It was all short lived. I noticed shortly after a conference in March my belly button was indeed leaking once again. A few months of non-descript bloating, aching and doctors who told me I was overreacting instead of believing me and here I am. It seems I rejected the material the stitch is made of which is probably what caused the hernia in the first place. I now, quite possibly, stand on the precipice of a third surgery in eighteen months.
As day breaks each morning I wonder if I have strength left for this battle. I have picked myself from my boots straps so very many times. My life has become the rollercoaster of endometriosis: some days perfect, some days unbearable. I’m tired of the ride and a life completely devoid of any security. I’ve watched life leave me behind from the sidelines, a witness to everyone else and their connections to the world. I face this unknown, crazy ride all on my own.
When I stumble to my feet sometimes to go off to the pilates reformer, the tennis court, or to see patients I do a body check regarding the severity of the pain and I wonder each day how long it will be before I really get moving enough to stretch out. I remember the days the pain never abated. I even remember the weeks I had trouble just dressing myself. I honor that those days are gone. I do believe those days are gone forever.
Day after day I force myself through it. It can’t be this hard for everyone. I sometimes notice other people get to eat normal food and don’t plan their day around their supplements. I believe all that effort keeps me on my feet. I always feel guilty that so many others are so much worse off than I am. I want to feel grateful for every moment. I believe I usually really do. I just fight so hard in quicksand that seems right now to be swallowing me. I believe I’ve given enough and I just wish this disease would stop taking part of me.
After my first surgery I believed the life I sought was out there for me. I believed I would find peace. I believed I could let go of my past and stop mourning. I believed my heart would be open now. I believed that this energetic block preventing all of my successes would disappear. I believed that this girl who couldn’t see beyond the pain would be able to set aside the struggle and live like there’s endless possibilities. I still hold those beliefs. I guess I have a necklace to put on.
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05.24.11
Posted in Uncategorized at 1:37 am by Administrator
Every May, a small glowing candle sits atop some sort of sweet, usually a gluten free cupcake, and it happens. I close my eyes, take a breath and get one single, solitary wish. These days there could be an awful lot of candles on that cupcake, but mostly to make me feel better, we use just one. Just one candle means just one wish. Ahead of me is an agonizing to decision of exactly what the wish should be.
I usually don’t have it in me to wish for something for myself. I was probably the only ten year old who sat in front of a Stadutto ice cream cake, party hat on my head, and wished for my grandparents to just make it to the next birthday party. I was the youngest grandchild of six, youngest by six years. Two of them made it to twenty-six birthdays, one to thirty. In my heart I still wait for the phone to ring every year to hear them sing Happy Birthday.
There were so many years that all I wished for was health and happiness for my family. I have never wasted this all important candle blowing experience on something selfish. One year I wished a 9 year patient who lost his ability to speak would wake up on May 25 and scream, “Happy Birthday Miss Sallie.” The last two years I wished for heart health, one year for my father as he recovered from bypass surgery and last year when Winnie, my poodle, went into heart failure just days before my birthday, all I wished for was that she would be on my lap for many birthdays to come. She is 5 pounds of pure love and if it would help her, I would give my own heart. I would give her every wish. If I could I’d wish my patients well, walking for those with cerebral palsy, a cure for my women who suffer from endometriosis, I would. I’d wish a casual acquaintance, whose daughter was recently diagnosed with Stage IV breast cancer at 24, years of filling her child’s cake with candles. I would wish away war and autism, hate and intolerance. But I work for those things to end every day and I think this may in fact be my year; my year for my own wish.
I spent so many of my birthdays in recent years having a little thing called Margarita Tennis. Even with all the extra birthday margaritas, tennis and endometriosis usually don’t mix. Searing sidewall pain usually trumps the libations. That was until surgery freed my body. I could wish to go to tennis team nationals. It took one four and a half hour surgery and one hernia repair but this past weekend we came up with the highest qualifying scores in the Eastern Section. Some things come from hard work, not wishes.
Standing at a lecture last week listening to one of the foremost endometriosis surgeons in the country lecture, I began to wonder if I need to start wishing for time to stop. I always feel that time truly began the day I had my excision surgeon. Treatment was delayed many, many years- most of those years were filled with tear and screaming filled birthdays because a cycle does not care that there’s only cake in your honor once a year. My body survived and my soul thrived from proper treatment. The anniversary of my surgery is like my new birthday. That was the day I finally got to live. But listening one of “the” guys talk about how 37 with endo is well the endo of the road in a way disturbed me. I have to remind myself that there are only roads forward and for the most part no one agrees on anything about endometriosis prognosis. Time cannot stop, that would be a wasted wish.
I could wish for all the success that I deserve. Surgery happened to have this other effect on me: The little PT that never was, a girl coated in so much pain there were no achievements, evolved in the ever focused therapist with a destiny. I got a logo, a website, an app in development, an office, a business plan and we hope one day a book. I’m working on exercise videos to help pelvic pain. I shove myself in front of microphones at conferences and I hold my head and my journey all up as high as I can. It’s not everyone who can live with this disease publicly and honestly, most of the time winning. The day to day of a new business is scary, so scary sometimes I cannot sleep at night. People used to wonder if I was kidding when I would say that I’m the Bethenny Frankel of endometriosis. Now, I think people are worried the Sallie Sarrel show is no joke. I need not wish to be fearless in my business quest. I know it’s all out there for me.
I remember what it was like to feel whole on my birthday, a feeling of glee from my head to my toes. Safety and security, all sometimes seem very far away. So many years, so many struggles behind me. So many years, so many struggles may be ahead of me, all good I hope. Today, in this moment, I am here. Five seconds from now, the rollercoaster may begin again. The dark side of endo hopes lifting my surfboard won’t re-pop open my belly button and that all my cycles ahead are easy. The light side hopes the people that count are on my side and that I will never again leave a doctor’s appointment crying. It never wants to see a pre-op room or be wounded by the unknown. Its wants a life full, not a life full of disease. Most days the light side wins. This is its own victory, not something to wish for.
I’ve been in denial for a few weeks that the day to capitalize on my one and only wish is rapidly approaching. The so called normal life everyone else seems to have gotten feels like its bearing down on me. Predictable is never fun, it’s only, well predictable. The good life, I think it’s only a wish away.
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05.12.11
Posted in Uncategorized at 2:06 am by Administrator
I anticipated that the Facebook Mother’s Day would be hard. I knew that the whole day would be filled with posts about children, gifts, and worlds filled with little ones. To counteract any misgivings, I planned an early morning run with a friend and a tennis team practice. I’d close the day by making my mother’s favorite dinner, chef salad. It started as a magnificent day: filled with sunshine, chirping birds and spring time. I spent my run crying. I awoke on Mother’s Day to the following post on Facebook, “ I’ve carried a child within my body, slept with a baby on my chest. I’ve kissed boo boo’s and mended a broken heart. I’ve been puked on, pee’d on, pooped on and spent sleepless nights in the rocking chair, but I wouldn’t have it any other way. My body isn’t magazine perfect, but when I look in the mirror I see a MOM, and there is no greater honor or blessing!”
I do truly believe that I am fully capable of carrying a child. I’ve had the best possible surgery as my first intervention. I’ve been followed by some of the country’s best acupuncturists and physical therapists. Owning a pelvic pain practice in many ways gives me access to the world’s best fertility and endometriosis specialists. Part of me even believes that eight years working in pediatrics, sacrificing my own financial security and at times, my own health, for the good of my patients gives me a little bit of an in with the big guy upstairs who plans all this. But, I also know that no matter what happens, maternal age is rapidly advancing. I am getting older. I honor the process of time. There are days when I blink and realize that somehow where ever I am at this moment is just where I belong. I had a long journey back into myself. I have fully been able to focus on my own revival and renewal. But a post on Facebook that talks about sleeping with a child against my chest somehow exposed my deepest desires.
This past fall I discovered a journal entry written a few days before I graduated college nearly 15 years ago. At that time, I was stricken with doubt over my future like all young 22 year olds. It was simply a list of everything I wanted for myself as I traveled through life. I didn’t dream of far away travels or over the top adventures. I simply listed that I wanted a career that would allow me to have the life I wanted while raising my children and being a wife. I graduated at the top of my class. I was President of everything. I swam for a Division I school. Outsiders would have pinned me to be the one that came back to the reunions a successful entrepreneur. Most of the women around me in college went on to become business executives, doctors, or lawyers. Writing down a list of such humble desires in those days probably would have been blasphemous. I was raised to own the world. Fifteen years after I wrote that note though, it was all there, plain and simple. My biggest desire was to nest. My concept of being successful meant having a family. I was poised to go out into the world and find my way, somehow. I dreamed of a life. I assumed I would be safe, happy and healthy. In this tiny little journal entry I alluded to a concept that family would bring me peace. That list I wrote it never mentioned two surgeries, fifteen years of pain, and a crusade. It left out that as time flew by, I would become so encumbered by my own issues that my grandparents would never see me marry and my family would witness seemingly lifelong struggles. I am proud to have come through this battle with minimal scars. I have picked myself up time and time again. I believe there is a future out there for me. Yet, the gashes inside seem to never heal.
My life was silently stolen from my insides. Adhesions wrapped around my organs and strangled the life out of all my original hopes and dreams. I just assumed when I was younger I would have a lifetime filled with memories of a wedding, midnight feedings, toddlers, and beyond. I also assumed fabulous would just be a part of my personality. I didn’t realize I would cherish my sparkle so much because I nearly lost it. I wish, with all my heart, it had been different. I accept that it was not. I an filled with wonderment about what tomorrow will bring. But, I feel the loss of those original hopes and dreams every day. When I saw it staring back at me in a list written so long ago, I felt as if I had let my younger self down.
That younger self might stand here and stare at this Sallie and wonder exactly how I arrived at this place. Maybe she wouldn’t understand that I didn’t feel strong enough to push my medical education even further or that I feel like I may never be able to live alone. Maybe she wouldn’t understand that I lacked confidence in who I was so much that I allowed too many suitors to treat me too poorly (and that by the time I realized I should not just settle, all the good ones were likely taken). Maybe she would feel the pain of watching all those good plans slip away as she stood next me. And maybe, just maybe, she would realize what it has really taken just to be me in the past 18 months.
I am a strong, vibrant, unstoppable force of nature, who decided one day that there was an answer to hip dysfunction, bloating and constant insufferable pain. From the day I made up my mind to find this answer until the day I marched down the hallway to surgery it was exactly one year. I have made every moment I can since surgery count. I have created new dreams, desires and hopes.
I still think that 22 year old Sallie would cry because the original dreams in her list disappeared. I suppose I would explain to her and to all of those around me, that thirtisomething Sallie, she found a way to break free and take each day as it comes.
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03.15.11
Posted in Uncategorized at 12:22 am by Administrator
Themes often explore timeless and universal ideas that are almost always implied rather than stated explicitly. A theme song is what gets you out of bed when the pain is swallowing you. A theme song is what forces you to try to gynecologist number 16, including the dreaded pelvic exam. A theme song is what you can hold dear to in quiet times when everything seems lost.
I picked my original theme song three years ago while treating a nine year old boy recovering from a stem cell transplant. He possessed an immune system that was free of his disease, but that was too compromised to allow him to venture out into the world. I treated him in his home, in between my own doctor’s appointments. His disease took out his brain’s speech areas but not the area of his brain that sang. We communicated everything through song. There in his basement I learned who Miley Cyrus was. All this little guy had left to do was smile and sing. His laugh, his heart, his immeasurable success inspired me to live a better life. His size and therapeutic demands pointed out how rapidly I was becoming incapable of working as a physical therapist. One day on a trampoline trying to get him to move with a purpose I doubled over. I felt as if something had ripped in my back. Miley belted out “The Climb” in the background. It was like a voice inside of my head that said I had to keep trying. Out there, somewhere was the top of this climb and an answer to all this torment inside of me, a diagnosis, a reason for this mess.
A year later when a cyst ruptured I laid in bed while short intense bursts of squeezing rippled through my body and Miley played over and over again on my Ipod as I tried to sleep through the experience. I wondered if I would awake in the morning. After they wheeled my father into the operating room for his heart surgery, a moment that forever changed my world, Miley played in the elevator. My life was disintegrating in front of me. Somehow inside I knew days would get better.
I forced myself through workout after workout in an effort to manage the uncontrollable weight gain and bloating. I cried some days as I ran, but I wouldn’t let go of the obsession to move. I always believed somehow movement was my path to healing. I’d play my theme song over and over on my runs just to have something to push me through. The struggles I faced, the chances I took from medical exams to visits to crazy out of the box specialists did seem to knock me down. Nothing explained what I had. It wasn’t a herniated disc, kidney disease, a parasite, or depression. Oddly enough, Miley played during every step of this journey. She played in the Cat Scan tube, reminding me that I was indeed not breaking. I heard the song again in the car after a leading advanced laparoscopist told me that periods are supposed to hurt. My faith was indeed shaken. I could no longer struggle. My existence was caving in.
I kept pushing on until one day in a small office where music never played I heard The Climb one last time. Maybe they put on Itunes just to distract me. I was crying openly in a crowded waiting room of pregnant women and their spouses. The morning had been spent in a different office being told by another surgeon that I was lying and that I was showboating. That other surgeon felt I was conning my doctor into surgery just for attention from my parents. I was eight days from surgery. I wanted nothing more than to back out. I had no strength left for this war. I felt buried deep. I was out of doctors. I was out of tests to be run. My voice and my own medical license were all I had left. I felt as if no one seemed to hear me. As the surgeon’s office manager peeled my fingers one by one from the check for surgery I heard The Climb one last time. It reminded me to jump and never look back. Surgery and the impending diagnosis was the next step in my climb, one last chance to take, one final tussle before I could really let go.
For every moment in time there are songs that touch our hearts, that link to the emotions swirling around us and that creep into our souls to define that period in our lives. These songs that begin to define us are our theme songs. I came from a life buried in the depths of the unknown. I took every chance I could and learned to climb through my darkness. Somewhere deep inside of me was a spark- a small gleaming beam waiting to ignite my heart and finally allow my life shine. It took nearly five hours to strip my body of the deposits that caused this storm. I woke up screaming and in a way, have not been silent since.
Gone were the days of gray. Gone were the days of simply mustering through to survive. Gone was the pain. I am remarkably different and most importantly the climb feels over. Proper treatment was like a lightning bolt and these days I am like a firework.
I do showboat. I am brilliance in every sense of the word, the perfect mixture of intelligence, humor, and strength. To some, I am like a sparkle on crack. I have endless hope. I am original and cannot be replaced. I have bottomless dreams. I believe so strongly that had it not been for surgery, all of this shiny Sallie would have slowly been lost forever. Endometriosis is an ongoing journey with moments that take everything from me. It takes these days to remind me what I am worth. This was a troubled journey, with many casualties: my health, my emotional wellbeing, my career, and most of my dreams disappeared into a fifteen year battle. I lived in a cloud of detriment. I lived as if every door was closed. But true to my newest theme song, Firework, doors can open, hopefully into the perfect road.
In the days when I slept nearly 16 hours a day, I never dreamed of red couture dresses fitted to each and every curve just so. I only saw corners to stand in and walls to lean against both figuratively and literally. I never dreamed of evenings in sky high heels. I never dreamed of 6am treadmill visits and a definitive wins on the court. I saw only blood, tears, and disappointment for my future in those days. I felt only failure. These days I own the night, I own my life because after the hurricane out came the rainbow.
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03.03.11
Posted in Uncategorized at 2:34 am by Administrator
In a tiny little bridal shop my best friend stood glowing in her Victorian inspired wedding dress. She draped the cream colored embroidered veil over her head and I started to cry. I wept for all the days past, present, and future. I wept because when my friend’s mother died a few weeks before her sixteenth birthday, neither of us could begin to imagine this happy moment. When we buried her father when she was just nineteen all happy moments seemed lost. But, there we stood tied together by life, since each of us was five, marveling at the peace meeting her then fiancé had brought her. She turned to me and said, “The best part is: the sex is great!”
Two girlfriends in the middle of the most important moments of their lives and we were discussing sex. What else do girlfriends discuss? The venerable girl’s night: a group of women, countless Appletini’s and hours of discussing relationships and sex. It’s how we all stay sane. But, this week I learned that for many women with endometriosis, these discussions are hampered and hindered and hidden by a lifetime of unmentionable pain. We know that endometriosis affects us at work, affects us at home, affects us achieve what we want from life. That for some it robs them of the ability to participate in life, to truly fit in with their peers. What we seem to forget to discuss is that for the 176 million women worldwide that suffer from endometriosis, endometriosis affects many in the bedroom.
I asked women around the world to enlighten me on their experiences with sex and endometriosis. In just over 24 hours between three social networking sites I had over 250 responses. 250 women, who bravely took to their keyboards and depicted torment, agony, and a life damaged by issues with physical and the resulting emotional intimacies.Our women discussed feelings of inadequacies, and a sense of inability to be fully present in relationships. Our women discussed distance between them and their partners. Our women discussed feelings of guilt and feeling as if they had let their partners down. In depth, they discussed their pains and their hopelessness when it came to sex. Fatigue impacts these women everywhere. Fertility struggles sapped out enjoyment. Most of all, they discussed how this particular part of endometriosis can truly be devastating.
American society sexualizes everything. But, it appears that some of our endometriosis survivors are unable to feel connected to their own sexuality and thereby, at times, their own identity as a woman. It was one of the few times since diagnosis, that I felt very disheartened for those around me. Nearly all of these women felt that very little had been offered to them in terms of treating this often unmentionable symptom of this disease.
Women’s health physical therapists love to discuss sex. It’s one of the reasons our seminars at national conferences are usually sold out. P.T.’s are all about quality of life, and a healthy sex life is part of a quality life. Healthy is a difficult term for women with endometriosis. Healthy sex life, can seem like an oxymoron to women who can barely sit, stand, work, or go to the bathroom without excruciating pain. Even the most traditional women’s health PT is a valuable resource. Finding one in your area (or mine HINT, HINT) can help be a part of the team that restores enjoyment. We can teach you stretches and relaxation techniques. We can teach partners home versions of manual therapy techniques to release tight fascia and muscles and we can help to provide a support system so that you do not feel alone.
I was absolutely shocked when I saw the vast amount of responses to my post this week that so many women crave the opportunity to discuss endometriosis and sex. My favorite post of the week came from a woman who follows the endo diet to relieve her pain. She said when her husband felt it was unfair that endometriosis had cost him his sex life she reminded him that not only could she not have sex, but she had to give up her favorite foods as well. Life without sex and steak/chocolate/bread/cheese/wine could definately feel unfulfilling. This March, the largest patient related workshop on endometriosis and sex will take place in honor of Endometriosis Awareness Month. Our friends at the Endometriosis Foundation of America will offer this groundbreaking workshop on March 19 in New York City. They have put together lectures to help you, the patients, the women and families who bear the burden of this disease. It is your turn to discuss, with the experts, this too often unmentioned symptom.
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