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thebeechbitch-blog · 4 years

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My Body is a Cage (And Other Emo Song Titles)

I’m at work, on the bathroom floor, taking deep, calming breaths to get my nausea under control. I took my emergency Advil too late for it to have any impact. The wave of pain in my abdomen is so severe that my body is clammy. It feels like someone is applying undulating pressure to my uterus with a warm curling iron. I feel feverish and on the verge of blacking out; maybe from anxiety, but also because I am so physically unwell that my pulse is racing to keep up with my thoughts. My sympathetic nervous system is raging. I try to think about how I’m going to get myself out of this situation. I’m on the precipice of losing all control over a situation that is about to become my reality for the next 36 hours. I start vomiting. In between hurling and shivering, I text my cousin who lives in Manhattan to see if she is working from home that day. A place of refuge would be more comforting, and I shudder to think about having to commute from Downtown NYC to Westchester. But it’s 4pm on a Tuesday and my cousin says she’s still at work. I would have to pick up her keys in Midtown then travel to the Upper East Side to her apartment. It’s not worth it. I might as well try going home. I think about all the possible scenarios in my head while nursing pain from a sickness that doctors have largely ignored my entire adult life. I vomit a second time, splash cold water on my face. The surge of serotonin following my purge is the only thing keeping the wheels moving and I have a small window of time until another wave hits. I collect my belongings from my work space and briskly tell a coworker that I don’t feel well. He jokes and asks if I have coronavirus.

I leave without a plan. The date is 3/10/20. Several days from now we’ll be mandated to flatten the curve and there’s a palpable feeling of caution in NYC. I think, for a moment, about how ironic this feels. People are tentative; they know something big is about to uproot their lives. I have this same feeling every month, not knowing whether my body will wreak havoc on me or spare me. My body already sets limits on what I can do most days. My body is already on lockdown and has been for years. I stumble out into the street from the lobby. It’s still light outside. In fact, it’s a perfect Spring day. I tell myself that I’ll be alright if I can make it to Grand Central, but my body has other plans. I go underground to catch a 1 train and quickly realize it’s not going to happen for me. I know, without a doubt, that my journey will be long and arduous. And then there’s dread like I’ve never experienced before. I’m stuck in unfamiliar territory, far from the comfort of my home, and the pain I’m experiencing is relentless. I walk back up to street level and realize I’m going to need a vomit bag. In a hilarious moment of realization, I remember that NYC imposed a plastic bag ban a week prior. I shuffle into a Chopt Salad establishment because I know for certain that they have piles of paper bags available for the grab and go lunch crowd. I am desperate, and apparently very resourceful. I walk to a tiny little park on Bleecker. I get sick in the Chopt bag and call my mom to talk through how I’m getting home. She doesn’t have answers and she’s frustrated that I haven’t “taken care of this already.” I don’t have time to be angry at her, but as my parent, she probably should’ve taken me seriously when I was 17. I digress. I’m now one bag short and still sick. I discreetly vomit into the park garbage bin and continue walking to West 4th. There’s a cab. It’s my only option to cover some ground. I hop in and request that the cabbie take me to Grand Central before realizing that he has just finished a curry chicken hot lunch. The cab reeks, but the meter is running. The absurdity of my situation provides some comedic relief in the moment. We’re at a stop light near Bryant Park and I can’t hold it in. I quickly pay my fare and roll out of the vehicle towards a trash bin. It’s still broad daylight, but any shame I feel quickly escapes my body into the bin. My only goal is survival and I am doing my fucking best. I notice a plastic bag dangling from the edge of a Chicken & Rice truck nearby. I grab it, thinking it might come in handy later. I walk to Grand Central after my episode in Bryant Park. I feel delirious. Bystanders must think that I’m coming down from narcotics. I haven’t looked at my reflection but if it matches how I feel, it’s less than optimal. I hurry into the Duane Reade before my train to Westchester, where I purchase a bottle of water and some Advil “quick release” gel capsules. I know it’s just a marketing gimmick, but I cling to semantics for any chance of relief. The line for the register is growing but I’m about to be sick again. I go to a quiet aisle and relieve myself into the plastic bag I grabbed from earlier. The notion of “fight or flight” is real and I am going through the motions today. I board the train. I am so close to being home with my heating pad, with my cats, with the remaining fragments of my ego. The ride is approximately 35 minutes and I’ve situated myself right next to the bathroom. There is an unspoken oath New Yorkers take about never using an MTA bathroom, but in an emergency, plan B very much becomes plan A. I spend the second half of the ride in the bathroom. Part of me is worried about touching surfaces because of the coronavirus, the other part of me feels like dying anyway. An episode like this will physically knock me out for a week. The psychological toll is much longer. The last stop of my journey is a car ride from the station to the house. It somehow feels like the longest five minutes of my day. I don’t even change my clothes when I barrel through the front door. My mom is calling, and my husband pays me a visit, but my energy is so low that I can’t formulate words. I sink into the couch and turn the heating pad onto the highest possible setting. Red blotches decorate the skin on my abdomen, but the pain I feel from the heat is a welcome distraction from whatever else I feel. I pack a bowl with the strongest Indica we have. Literally nothing helps except the fleeting surge of serotonin I’ll get from the next time I vomit. For some reason, I continue to vomit with a fever into the next day. The pain in my abdomen subsides, but I’m still really sick. This isn’t an anomaly and this isn’t coronavirus. This has happened before -- more than once. My mom comes by with soup, which is the only thing I can eat after 36 hours of hell. I’m not even sure if my body is capable of producing bile anymore.

I recall the events of the day prior; a momentary lapse in acceptance. I can’t go on like this much longer. I am traumatized. I feel so, so isolated.

And then, several days later when Covid 19 pummels NYC, everyone else is isolated too.

(To be continued.)

#endometriosis

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thebeechbitch-blog · 5 years

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Raising Hell

Most of you know me for being outspoken and opinionated about everything. Hell, some people might call me an “over-sharer” (for anyone following my Instagram account). The truth is, I’m a private person where it matters. I want to share a deeply personal story with the hope that it’ll spark a dialogue about women’s health and open lines of communication between other women who feel alone in their quest for answers and advocates. I’ve been struggling with a silent and undiagnosed illness for roughly five years. I should preface this by saying that it’s actually been much longer than five years; I’d experienced symptoms in high school that were eventually mitigated by using hormonal birth control for nine years. Every month, like clockwork, I would start my period and the first day would be a nightmare. I would often barrel through the nurse’s office in high school, begging for Advil, writhing around in her office until the pills kicked in. At home I would lock myself in the bathroom and assume fetal position on the floor because the cool tile was the only thing that kept me from passing out. My mom explained to me that cramps were part of being a woman, so I never thought my experience was an abnormal one. I went on birth control in college. For the most part my cramps got better, but a host of nasty side effects cropped up with birth control. For the first two years of starting a new pill, I had debilitating depression with suicidal ideation, something I find difficult to admit even 13 years later. My freshman year of college was spent sleeping and watching independent films in a dark dorm, seldom leaving for social interaction of any kind. Years later when I moved over to a different prescription, I experienced the same sadness: constant weeping over nothing (to the point where my roommate and friend said she couldn’t deal with me anymore) and cystic acne that only exacerbated my depression. The painful cramps were gone for nine years but I still took Advil for slight cramping. And, I would spend years in dermatologist offices, using medicated creams to keep my breakouts at bay. When I was 25 I decided I wanted to live more holistically and stopped taking birth control. The side effects during this phase were horrific for my skin. I say this with no hyperbole – it took my skin three years to fully recover from the damage that hormonal birth control caused. I also suffered from unexplained GI issues that prompted a colonoscopy. Results showed I had an inflamed lymphocytic layer, presenting colitis-like symptoms, though the doctor told me “it’s probably IBS.” I started noticing other strange symptoms off birth control, one that I’d never experienced before. For those of you who really know me, you know that I love to exercise. I was running regularly in my early 20’s; I could run a 5K in 30 minutes with general ease. Several months after I stopped birth control I started having debilitating uterine cramps (for reference, it feels like a strong wave of contractions that knocks me to my feet and makes me clammy) about 10 minutes into a run. I would find myself doubled over in pain, on the brink of vomiting or passing out. Eventually, I realized that if I sat it out for five minutes when an episode occurred, I’d be able to continue my run like nothing happened. I started getting paranoid about having an embarrassing episode in front of people, or not being near a bathroom when I might need one, so I stopped running outside. I tirelessly scoured the internet for other women who might be experiencing similar symptoms. I found several forums where women documented the same scenario I’d been experiencing on my runs, but no answers from medical professionals. When I raised the issue to my OB-GYN during a routine check-up, she shrugged, claimed she had “never heard of that,” and sent me on my way. That was the last time I saw that particular doctor. It was around this time when my painful periods came back with a vengeance. In 2016, my periods became so intense that I was vomiting regularly from the pain on the first day. The first bad episode that comes to mind is when I got sick at work and had to puke into my trash can. I left early after my coworkers stopped me in the hallway to tell me that I looked pale. The pain was so severe that I continued to throw up all over myself on the drive home. One bout in December 2016 landed me in the hospital. I had to lie to my supervisor and say that I came down with a bad case of food poisoning, which, incidentally, would be my crux each time I had to stay home from work. My (now) husband (then fiancé) grew worried that I was dangerously dehydrated. I couldn’t drink water without vomiting. Any pills I took to lessen the pain were quickly eliminated into the toilet, and heating pads weren’t helping. This went on for hours.

I sat in the hospital waiting room that day, vomiting into a bag, and feeling like death might be a better option. The hospital staff were quick to put me on a bed in the hallway, where I continued to hurl into a bag while staff and patrons looked on. Once the morphine and anti-vomiting meds kicked in, the doctor came by to tell me I was experiencing “dysmenorrhea,” which is clinically defined as “painful menstruation.” I ripped into him with what little energy I had left from the day. I explained that this wasn’t normal and that I wanted something more to be done about it. He looked me in the eyes and said, “I’m not sure what you want me to do,” then slinked away. Two hours and my full deductible later ($1,500, in case you were wondering), I exited the hospital depleted of energy -- hopeless and angry as hell. I dreaded that this was the new normal, so I decided to make some life changes. I decreased coffee intake and started a new exercise regimen that didn’t include running. I researched vitamins to take for inflammation (fish oil, garlic, turmeric). I introduced spinning classes and yoga, which ended up being such a great thing for me. I even lost some weight leading up to my wedding in 2017. Periods were still bad – I was living on eight Advil and portable heating pads one day a month (shout out to Thermacare) – but I felt more in control of the symptoms. I was experiencing the dreaded exercise pain during spin class but could manage it by slowing down for five minutes or by avoiding third position movement (riding out of the saddle seemed to aggravate my uterus and GI symptoms). Sadly, my exercise pain started getting worse and more frequent from 2018 to 2019 and I started tracking symptoms using a fertility app (shout out to Flo). There was no continuity or pattern, except I noticed that there was a two-day window right after my period ended when I could exercise without pain. Two days. Otherwise, pain would occur ~10-15 minutes into any cardio activity. Any time I’d go to a group spin class I would have to stop pedaling or worse, leave the bike for a mad dash to the bathroom. It has become too embarrassing for me to exercise with or around other people. To date, I experience exercise-induced uterine pain with GI symptoms 95% of my cycle. And new GI symptoms have appeared in 2019. I feel a stabbing pain in my intestines right before I relieve myself and debilitating constipation most weeks. I almost never feel the relief of an empty colon. I feel bloated on most days, regardless of what I eat. Some other symptoms related to this illness include fatigue (check), bladder fullness (check), lower back pain (check), and a host of other fun things I experience regularly. I’ve gone to different doctors for all these symptoms over the years, with very little relief and even fewer answers. For those of you who have read this far…thanks! I realize that I haven’t revealed the big diagnosis, which is an allegory for my entire journey thus far. I’ve been to four different OB-GYNs over the last five years. I’ve had countless ultrasounds and different hands feeling my organs through my vagina, only to be told that I am “completely healthy.” These diagnostic tests are an invasion of privacy. Imagine if a man complained about frequent urination and had to go to four different doctors for multiple prostate exams. Can you imagine a man being anally probed on multiple occasions, only to leave the office without a diagnosis? Probably not, because it simply… Would. Not. Happen. With a hurried tone, my most recent doctor told me I could either go back on birth control or try to conceive. If I had trouble conceiving, he would consider exploratory surgery as a next step. I was 28 at the time and not looking to conceive. I had also explained that birth control made me suicidal as my body adjusted. He told me to come back when I was having difficulty getting pregnant.

Can you imagine? A woman’s two options are synthetic hormones or pregnancy. I didn’t want either option at 28, so I chose the third option – live in pain. Miss work, cancel plans with friends, cease exercise altogether. This is the path I chose. The next time I visited his office was after a particularly bad month in February 2019. He stuck to the same routine: ultrasound, probing, followed by “you’re healthy” dialogue. I broke down in tears when he showed me my “healthy” ultrasound. I had to prove my misery with tears and whimpers for him to finally start taking my pain seriously. He said we should go ahead with an exploratory surgery “if that’s what I wanted” and passed me off to his assistant to make an appointment. I put the appointment on hold because I didn’t feel right about how this doctor had treated me. Did I really want this guy doing an invasive procedure after years of rebuffing me and my very real, perceived pain? I sought answers online and decided to make an appointment with one of the only three (vetted) specialists in New York state qualified to correctly diagnose and remove unhealthy tissue from my abdominal cavity. My appointment in November will be out of network because our healthcare system has failed women. We’re told that women should be checked regularly for HPV during pap examinations and the annual exam is covered by insurance. It’s also worth mentioning that HPV rarely develops into cancer. And yet, this is the gold standard for annual exams. Anything falling outside of the annual pap is billed. Any other complaint or exam… billed. Here it is. The diagnosis! It’s estimated that 1 in 10 women in the world suffer from Endometriosis and there are currently no diagnostic tests that accurately identify the disease. Exploratory surgery is the only way doctors can diagnose Endometriosis with certainty. Endometriosis is severely underfunded, but very common. It can affect all abdominal organs, in addition to the liver and lungs (more rare), and hormones fuel the development of diseased tissue. Finding a specialist in the field is daunting, and surgery is often too expensive for most women. Most non-specialized OB-GYNs will use ablation, a surgical technique not recommended for full removal and recovery. I received a call from Dr. Masahide Kanayama’s office after filling out an online form. The office manager ran off a list of questions: “do you experience painful cramps, nausea, vomiting, constipation, diarrhea, back pain?” I said “yes” to all of these. I told her I’ve been vomiting from the pain for years. I asked her if anyone had come into their office with constant, exercise-induced pain. She said, “oh sweety, it sounds like you have Endometriosis.” Nobody believed me. Nobody explicitly stated the obvious to me, out loud. I’ve had to advocate for myself for years. I’ve had family members brush me off, calling me a “hypochondriac,” but I’ve never been more certain of anything in my life! We need to do better for women’s health. We need to believe women. We need to advocate for women. We need to fund research for women’s health and specialize in women’s diseases. I have my first appointment with Dr. Kanayama, an out of network doctor, in November. He’s a specialist in the field and may be able to see signs of Endometriosis on 3D ultrasound. If I’m comfortable moving forward and he thinks I’m a good candidate, I’ll schedule a surgery to excise the nasty tissue that’s been plaguing me for years, robbing me of my happiness and sanity. Who knows how severe or extensive it is; I just hope they can get it all. If you are a woman who has been experiencing any of the symptoms I’ve shared, or have had similar experiences in doctor’s offices, please reach out to me. Or better yet, share your stories. I want to hear from you and let you know that you’re not alone, you’re not crazy, and your pain is real. I realize that not everybody is as candid or willing to share, but we must start somewhere. We must raise hell. “Hell hath no fury like a woman scorned.”

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