Encounters with the Disability Police: my illness, emotional support animal, and "be nice" mandate

Encounters with the Disability Police: my illness, emotional support animal, and "be nice" mandate

Others’ judgment and treatment of me transformed my own beliefs about the legitimacy of my illness. I unintentionally invalidated my own body’s experience of pain, and I’d allowed those who chastised me for “taking advantage” to usurp my right to be treated decently outside the confines of my own home.  In letting people like this dictate how I would care for myself while enduring unspeakable pain, I somehow lost ownership of my experience.

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Top 10 Girl Power Goods of 2016 (some oldies, all goodies): Inspire Santé's List

Top 10 Girl Power Goods of 2016 (some oldies, all goodies): Inspire Santé's List

These are my favorite lady products of 2016, but that doesn't mean they were all born in 2016.  They're the sweet little nothings that made an arduous year (all those POTUS debates, amiright?) just a bit better or comfier or happier.  So, without further adieu, enjoy!

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SEX: my candidate for 'word of the year' in 2017

SEX: my candidate for 'word of the year' in 2017

Sex proved a bit tricky to untangle. I looked it up in every dictionary in the house, but dictionaries are surprisingly and disappointingly silent on this point.  Maybe the anti-sex-ed lobby is in bed with Merriam-Webster, or maybe there are fears that sexing up (definition below) the dictionary would cause the mass removal of dictionaries from American family rooms and classrooms.  Even today, 20 years later, Dictionary.com provides a stunningly unhelpful definition.

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A 5-point plan for getting help with your 'down there' health

A 5-point plan for getting help with your 'down there' health

So you have pain with sex, or you leak urine when you sneeze, or you feel a bulge in your vagina, or you have chronic constipation or any other “down there” health concern.  Where do you begin?  Having suffered from pelvic pain and an assortment of related health issues for years, these are my suggestions for finding the right provider, getting the help you need, and speaking candidly about tough issues.

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Stop period-shaming women.

Stop period-shaming women.

My first period was dreadful from the first drop. I grabbed several pads and headed to my room with a tear-stained face. For the next few hours, until my mother returned home, I checked my underwear every few moments.  Each time that I saw blood, I changed the pad.  I think I probably changed it every 20 minutes until she came home.  I had no idea what I was supposed to do and was woefully unprepared for this moment. 

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“But you don’t look sick.”

“But you don’t look sick.”

I opened the driver door and was confronted with a wave of judgment and anger.  The man yelled at me: “can’t you see we are still getting into our car? You’re not even disabled! You shouldn’t even be parking there!” I flushed with embarrassment and became shaky.  And for the first time in my life, I yelled at someone in public. “You have no idea what you’re talking about. You know nothing about me!”

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Sex after Pelvic Pain

Sex after Pelvic Pain

Sex after pelvic pain is f*#&ing scary (no pun intended). Nevertheless, I somehow DID find the courage to hop back in the sack, and I’m really glad that I did.  This time, it didn’t feel like my PT’s voice was in my head the whole time, narrating where my knee should go, whether my pillow was at the right height, and whether I should reapply my Lidocaine.

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Persistent Pain & Holiday Survival

Persistent Pain & Holiday Survival

Whether the holiday itself is a “good pain day” or a “bad pain day,” it’s a “pain day.”  (When you have persistent pain, every day is a pain day.)  There’s anxiety leading up to that day, worrying about how you’ll feel, and there’s exhaustion after the holiday itself as you recover emotionally (if not physically too).  

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My name is Erin, and I'm a yogi.

My name is Erin, and I'm a yogi.

I  didn’t “recover” from pelvic pain spontaneously.  Rather, I gradually felt better, I had more “good days” than “bad days,” and I slowly reincorporated physical activity (things as simple as walking) into my life.  It took time, and it took the persistent encouragement of my physical therapist for me to take the plunge.

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Normalcy-with-a-twist: Preserving fertility after pelvic pain

Normalcy-with-a-twist: Preserving fertility after pelvic pain

Coming off years of chronic pelvic pain including surgeries, medications, excruciating pain, fear, and endless medical appointments, I’m understandably skeptical about what pregnancy would mean for my body.  My providers have, over the years, offered advice that ranges from horrifying to reassuring.

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Our wedding(s): navigating life's milestones through chronic illness.

Our wedding(s): navigating life's milestones through chronic illness.

My illness and weekly out-of-state travel for care had worn me down.  I looked like a ghost, spent most of my time in bed, missed classes frequently, and was probably starting or withdrawing from some new horrible medication.  We realized that if we married, I would lose my insurance -- my only access to care.  And to be frank, I was a wreck.  We held hands, I cried, and we decided to indefinitely postpone our wedding.  Notifying our family and friends was heart-wrenching.

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Pelvic pain & no panties in a Polar Vortex

Pelvic pain & no panties in a Polar Vortex

My last post ended with my arrival in Chicago.  After a two-day, cross-country drive from New Mexico, our UHaul pulled into town.  We arrived in the midst of the 2014 Polar Vortex, the coldest winter that Chicago had seen in 30 years.  My pain was so severe that I couldn’t wear pants or underwear, and the thick sheet of ice covering most of the city didn’t make it any easier to walk normally or navigate a wheelchair.

My husband and I unpacked our UHaul as the snow poured down, and then, surrounded by boxes, we sat on the floor of our apartment (above someone’s garage) and sipped hot chocolate.  What had we done?

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When the "best" treatment fails.

When the "best" treatment fails.

This treatment, and these PTs, weren't going to be the ones to get me better. This was true despite how badly they wanted to help me and despite how compliant I had been with their treatments.  It was true despite how passionately they felt about pelvic floor disorders, how much book knowledge and certificates about my issues they possessed, and how personally involved with my case they felt.  These women genuinely, deeply cared for me. 

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$60,000 in medical debt & no underwear to show for it.

$60,000 in medical debt & no underwear to show for it.

After flying across the country to meet Dr. Andrew Goldstein and get a diagnosis for my unexplained pain, I faced an even steeper uphill battle: finding someone to provide the pelvic physical therapy he’d prescribed.  Back home in Albuquerque, I called therapists from my summer job at a high-brow law firm. The first several clinics had waiting lists of 3-6 months.  10 calls later, I got an appointment.

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Dr. Oz & My Terrible, Horrible, No Good, Very Bad Pain

Dr. Oz & My Terrible, Horrible, No Good, Very Bad Pain

This blog is the second in a series of four that will be published weekly by the Women's Health Foundation.

Hours after finishing my second year of law school, I sat at the kitchen table and absentmindedly Googled my pain symptoms.  Although I’d run the same search countless times, this one turned up a Dr. Oz video discussing something called vulvodynia.  I’d never heard the word before and was captivated. “HE’S TALKING ABOUT WHAT’S WRONG WITH ME!!!,” I yelled...

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"When did your pain start?" A tale of undies, tampons & [no] sex.

"When did your pain start?" A tale of undies, tampons & [no] sex.

I recently had the pleasure of chatting over coffee with Missy Lavender, Director of the Women's Health Foundation.  She's a self-proclaimed pelvic health evangelist, and a damn good one.  We clicked immediately, shared our stories, and made plans to collaborate.  This is the first in a series of four blog posts that the WHF is featuring about my pain journey.

This is my story.  Everyone's story is different, and it twists and pains people in vastly unique ways.  But I hope this gives you some idea of what it's like to live with a confusing issue "down there," and to reassure you that you're not alone in your suffering.

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Finding your voice when your care goes from bad to worse

Finding your voice when your care goes from bad to worse

In 2011, I lived in New Mexico and was navigating the challenges of law school, as well as ongoing pelvic pain (which, at that point, I was simply ignoring for lack of available care).  Facing mounting stress, I started developing GI issues (big surprise, right?). So, I made a doctor's appointment (crazy idea, huh?).

I wrote this letter to the hospital's patient advocate after my appointment that day.  It tells the story from there.

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IUD Nightmare No More: Special patients deserve special treatment!

IUD Nightmare No More: Special patients deserve special treatment!

When I got my first IUD, it was with a rotten doctor and no compassion.

It was December of 2010, I’d just finished my first semester of law school, and my gynecologist told me it was a simple in-office procedure. I picked up my cervix-dilating medicine at the pharmacy and followed the instructions exactly.  I had also asked my doctor about pain meds for the procedure.  She said none were necessary but I could take something of my own if I wanted.  I brought an old bottle of Vicodin.

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Insurance discrimination against women in chronic pain

Insurance discrimination against women in chronic pain

I recently wrote a blog entry for my law firm, Jackson LLP, about insurance discrimination against women in pain or suffering from chronic conditions.  It's so relevant to Inspire Santé's mission that we're also sharing it here.

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Cycling for change (& not the way you think)

Cycling for change (& not the way you think)

"When was the first day of your last menstrual period?"  Every woman who has gone to the doctor for any reason can relate to this.  Upon your first interaction with the nurse or medical assistant, you're asked a series of questions, usually while they take your blood pressure, and they ask about your LMP (last menstrual period) in a monotone way.  If you hesitate, they hand you a mini-calendar.

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