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5.5.17

A relatable blogpost about Endometriosis: http://www.lennyletter.com/health/a160/the-sickest-girl/18268533_10155376361708487_6276987880105082782_n

I have read this blog post probably two dozen times, and other than the obvious fact that I’m not a widely successful TV star (and the less obvious fact that I do not share the additional medical challenges as Lena), this piece speaks to me. It speaks to my experiences and to my relationship with the Endometriosis that can cause havoc in my body. Endometriosis is an enormous reason that I feel so strongly about a woman’s right to choose what happens to her body.

“Simply put, Endometriosis is when the tissue that lines the uterus grows in other places in the body … While Endometriosis affects one out of every ten women, only a fraction of those cases will ever be diagnosed. Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria.”

Endometriosis looks like my dog, Reilly, not understanding the concept personal space with me on the bed. And while Reilly is always a cuddle bug of a pup, what the picture show or t18195154_10155376361768487_2207508336892290187_nell you that it was taken two days after my fourth endometriosis surgery this past February. I wasn’t moving too well, was a little high on some pain meds and all around not the happiest camper. There were extremely slow movements; There were four hour naps after a 20 minute outing; There was a lot of Netflix; and there were tears.

My Endometriosis looks like my dog bursting any personal bubble to make sure everything is okay when I’m crying and then staying that way for the previously mentioned four hour nap.

And one of the worst parts about having Endometriosis? The doctors can’t give you a “why,” only an explanation as to “how” the disease functions.

In the ten years since being diagnosed, I have been hospitalized for Endometriosis pain management countless times and have undergone four surgeries to manage and treat my disease; I have missed immeasurable amounts of school; and I depend on a two inch needle being stuck in my butt every three months to administer the medicine that keeps the disease in check. I essentially have to trade the pain-free days for medically induced menopause. Because in ten years, that Lupron shot is the only thing that works.

In ten years, I have experienced the doctors who have said that “a girl your age” can’t have Endometriosis despite the surgical pictures and scars to prove it. I have experienced being the “sickest girl in school” when I missed days and weeks on end of classes. And like Lena, I have ignored my pain and the “messages my body was sending me in favor of productivity, attempting to prove my resilience.”

And yet despite all of this, you see, I am “lucky.” I was diagnosed when I was thirteen, and I was diagnosed in months not years; albeit those few months, and the many painful ones I have endured since my diagnosis, are what I imagine hell is like. I have a doctor who listens and explains; I am covered by health insurance that still helps to pay for an outrageously expensive solution; I have friends who understand; and most importantly I have parents who offer me unwavering support.

This isn’t supposed to be a pity party, though, because as Lena so accurately explains, “I would choose to be a woman. Any day, any way, any time … I am oddly fearless for a wimp with no upper-body strength. And I am no longer scared of my body. In fact, I listen to it when it speaks. I have no choice but to respect what it tells me, to respect the strength of its voice and the truth of my own.”

My goal is to not only bring awareness to this disease, because man it really sucks sometimes, but also remind people to be kind to one another – you never know what someone else is going through. Endometriosis, along with countless other physical and mental illnesses, does not look like a broken arm or the chickenpox. Instead the symptoms “look like a pair of sweatpants and a Charlize Theron–in–Monster–level grimace.”

So here’s my ending rant..

I want to remind everyone that there are A LOT reasons for a woman to rely on birth control other than to manage whether she gets pregnant. Abstinence doesn’t control Endometriosis – medicine does and that medicine happens to be birth control. Planned Parenthood offers some of those medicines and the Affordable Care Act offers the opportunity for them to be just that, affordable.

For those who question the validity of the pain that they or others are in – listen to it. You don’t have to be superhuman all of the time, and pain usually has a story to tell.

And lastly, to the insurance companies that don’t want to pay for the treatments that work, and the politicians who think that affordable healthcare shouldn’t be a priority – I challenge you to go spend a few days, weeks or months in the fetal position on the couch due to crippling pain, hugging a heating pad and bottle of pain meds like they are the only things you would bring to a deserted island and then let me know what you think. Unless you know how to tell my uterus (or other people’s body’s) what to do to work properly, and want to share that magic information, we cannot let this new health care bill pass.

I’m so lucky to have access to great healthcare and have health insurance that covers the treatment for my disease, but that is not necessarily the norm, and Endometriosis puts me in the club of pre-existing conditions. So, being told that I may not qualify for affordable healthcare down the road definitely leaves me feeling a little “triggered.”

TL;DR – “I hope for a world where illness isn’t equated with weakness, where mental health issues do not discount physical ones, because, guess what, we are complex beings.” But most importantly – be kind to one another. Everyone is facing some kind of battle. Speak up and keep fighting for what you believe in. Go call your senators. Go tell your congressional representatives how you feel and what you think. Make your voice heard.

Much love. Peace and blessings.

 

 

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