Why I'm not a Warrior

Endometriosis awareness flooded my newsfeed throughout March and now adenomyosis awareness is setting up to dominate April. I think it's great that people are so dedicated to raising awareness. I personally experienced the delayed diagnoses, the decades of dismissive doctors, and the emotional impact of being misunderstood. I agree with almost everything the memes flooding my Facebook newsfeed say. But I don't agree with calling ourselves warriors. 

One of the biggest issues we face is the association with "hysterical women" with endometriosis. People dismiss our concerns--the severity of the disease--because they have been taught that endometriosis patients are just dramatic and hysterical. Fighting this misconception is ineffective if we flood our friends and family with overly-emotional dramatic memes about how strong we are and how misunderstood we are. 

You can't fight myths by proving them to be true. We are strong. We are fighting a battle. But the world won't buy that we are "warriors" until we flood them with clinical, documented facts about the physical severity of endometriosis. The world will continue to dismiss us if we act like overly-emotional dramatic "hysterical" women. We are patients dealing with a misunderstood and understudied disease. We are advocates. Not warriors. 

Am I building a number or building me?

Yoga taught me another lesson morning when I rolled over with my alarm at 7:30 and started arguing with myself. It was time to get up if I was going to make it to the 8:30 yoga class. If I didn't get today's two classes in, I knew I'd have a hard time catching up on the 108 Challenge. I caught myself thinking how this was a chance to get two more classes in and that's when  it hit me--yoga was teaching me another lesson and it had nothing to do with cool poses. 

When you walk into a class, you hear about "no judgment, no expectation, no ego." When did I lose sight of the part I love the most? When did I start worrying about what everyone else was doing? How many classes they'd been to? How many beautiful poses they could do?  When did I start thriving on acknowledgment and praise from the teachers who are all trying to teach me not to worry about it?

I'm highly competitive--always have been. I am also used to being the best at a lot of things--it's a combination of some God-given talent and some well-honed stubbornness. But Yoga is an individual journey. I'm supposed to be building me--not a list of asanas I can do and not an insane number of classes I finished. 

Our teachers work very hard to bring our awareness to things like self-judgment, going within, competition, celebrating every breath (even during dragon), and personal growth. It has all started to permeate my life and I am much more balanced off the mat, but somehow I managed to shift a lot of those bad habits into my yoga practice. 

I fell in love with yoga because of the little moments--the day I could get my hands all the way down in forward fold, the day I flew my crow, the day I laid completely flat in pigeon. In the beginning, I embraced being a beginner. My expectations ramped up much too quickly.  And yoga hit me with another lesson. 

I set a goal in January to do 108 yoga classes this year. I've done 61 and I may finish in 108 days. It would be really cool if I did that. Not because I'd be one of the first. Not because other people would like it. But because I did it. Because I will have I grown in my practice, learned on and off the mat, and changed my perspective with all of these yoga lessons. 

Just when I start to think I've got the hang of this, it hits me with another lesson. I'm still a beginner and I'm okay with that--even if I have to remind myself a few more times. 

There is nothing wrong with you, your tests are all normal...

Your test results are fine. There is nothing wrong with you. 

You probably just need to lose some weight.

You’re just experiencing what every other woman deals with.  You’ll learn how to handle it someday.

I can’t tell you how many times I heard statements like these.  I’d finally get the courage to visit a new doctor about my constant abdominal and pelvic pain.  I’d go through all of the lab work, the excruciating physical exams, the imaging studies, the awkward health history discussions.  I’d anxiously await the news – I just wanted answers.  And instead, they would dismiss me.

Pain had already become a common part of daily life: exercise, trips to the bathroom, annual exams, sitting for too long, standing for too long—it was all excruciating.  And then, after gaining the courage to go to yet another doctor, after suffering through all of the dismissive reactions as I told them what was wrong, after enduring the painful exams and shelling out thousands for imaging studies, they always told me nothing was wrong.  But SOMETHING WAS WRONG.  No one believed me, even when I couldn’t get pregnant.  There was nothing wrong with me – the MRI showed nothing, the CT was “unremarkable,” the blood work looked “great,” the physical exam was fine. The STD studies were clear (obviously, since I was either a virgin or with my husband). After several rounds of these visits over the years, I began to experience mental and emotional issues in addition to the physical pain that no one could figure out.  I started to believe them that nothing was wrong.  I started to believe them. 

About 1 in 10 women have endometriosis.  On average, it will take 10 years for them to receive an accurate diagnosis.  And sadly, most of them will never receive proper treatment.  Many women experience the same frustration as I did – and many of them lose years of their life—they don’t finish their education because of the constant interruptions, they don’t advance their careers because they need too much sick leave, they don’t have families because, even when sex isn’t painful, carrying a child is often a challenge. 

Endometriosis occurs when inflammatory tissue similar to endometrial tissue is located throughout the body. The tissue swells and bleeds with hormone changes, which causes bloating and pain. Despite the common occurrence, there are many myths circulating regarding endometriosis—even among the medical community. Although most women are told it’s a “reproductive system issue,” it can also affect the bladder, ureter, colon, pelvic sidewalls, diaphragm, and other areas.  When the tissue swells, it can affect all of the areas in the pelvis. The pain can be cyclical or constant, sharp or throbbing. And since so many doctors use failed, outdated treatments, it can often seem very hopeless.

All OB-GYNs are qualified to conduct laparoscopic surgery for endometriosis – and they all seem to think they are pretty good at it.  But the procedure they use, which simply burns the endometrial tissue with a laser, has an estimated 80% failure rate.  Doctors know when they take their patient into the OR that they will probably see them again in 2 or 3 years.  They put women through surgical procedures every two or three years, put them on chemo drugs that have lasting effects on bone health and memory, and belittle the persistent pain.  And the community seems to have accepted that this is okay.  Despite the documented effectiveness of more advanced techniques, medical schools still teach our newest doctors to burn the endo every 2-3 years and to put women through hormonal hell in the interim.  Insurance companies refuse to pay higher fees for the more intricate and skilled procedures available. This is not okay.  It’s inefficient for the insurance companies, it’s ineffective for the patient’s health and quality of life, and it’s misrepresentative of the health care we could provide. 

In June 2014, I was lucky.  I found a surgeon in Atlanta who has dedicated his life to properly treating endometriosis.  He uses the laser to perform excision, a specialized surgical technique, to completely remove the endometriosis from the body.  He doesn’t burn the top of the endometriosis tissue off with the laser, he cuts it out and eliminates the problem completely. Of the thousands of GYN surgeons in the US, only a handful have taken the time to become skilled with excision.  And that’s a shame.  

Back to the Basics

One of the things I immediately loved about yoga is the personal focus. The lack of comparison. The lack of judgment. The lack of expectation. The lack of competition. After years of being pitted against others, I was so excited to focus on my own growth when I set out to complete 108 classes this year. 

At first, I had no expectations. I was just going to learn what I could and do what my body would do. I would admit my limits. I would be okay with being a beginner. A few days ago, I realized that I was slowly losing my personal focus. My practice had slowly become consumed with comparison, expectation, and competition. 

On Friday, I decided to return to my thing. I don't try every variation. I don't make myself do everything. I listen to where I am and I am enjoying the journey again.  I check my ego at the door now. I focus on celebrating my progress regardless of everyone else's. And it has already paid off--I flew my crow today. It's been a goal since Christmas Eve.

I flew my crow today. And it was all mine. And it was awesome, even among all of the cranes and handstands. It was mine.

My first month at PLYC

January is almost over. After the adventures of last year, I promised myself this would be the year of health. I can happily say that I think I'm getting there. I had already come a long way last year after the surgeries, spinal taps, and 80-something visits to all of the different specialists I saw.  I was leaps and bounds ahead of my worst chronic pain days on Christmas Eve, when I watched a few girls do crow pose after our class at the gym. I remember wondering if I could ever do that and became focused on the physical challenge. I walked into Pink Lotus on January 4th. Today, after weeks of encouragement from some of the most inspiring and selfless yoga teachers I know, some tips from some great new friends, and the comfort I feel in the amazing little studio I can now call home, I made it through all of the poses. And my crow flew for almost two whole seconds. 

What I didn't expect from yoga was to learn so much beyond the physical poses--I never dreamed I'd learn this much about me. I have learned to be brave and try the harder classes. I've learned to be strong and hold out a little longer than I think I can. I have learned to be humble and take child's pose when my body has had enough. I've learned to celebrate the little moments, especially when I hit a new pose. And I've learned to let go. After so much time in physical pain, stressing over doctors visits and figuring out how to function as the doctors took their sweet time diagnosing me, I needed to learn to let go. To accept. To celebrate. 

But quite possibly the biggest thing I needed was a home. Shortly after moving here, we were so busy finding medical help that we never found those "non-work" friends. I have that now. And it's a great feeling to know that I can #RetreattoPink whenever I need to. I love Pink.

Judgement and Expectations

When I started practicing yoga, I was skeptical of the mental benefits I had heard other yogis describe. I was focused on the physical challenges and the mental changes snuck in on me somewhere along the way. I didn't understand how awesome it was to walk into a room with not expectations until I thought more about life off my mat. 

I've been bombarded with pregnancy announcements lately. Seriously, over the past six months, I've probably had at least a dozen friends or acquaintances get the happy news. I love babies. I love kids. I want a houseful of them. And I'm thrilled for all new parents in my life. But I'm also increasingly frustrated with society's expectations for me and every other childless woman out there. 

After five years of practice, I am usually really good at hiding the pain. I remember the first time Mike and I "tried."  Seven friends were pregnant in the first six months. We were thrilled for them--but that doesn't mean we weren't struggling with the constant reminder of our own struggle. Society expects women to be unidimensional.  You are required to be ecstatic for any pregnant couple. If you let any pain or frustration show with your words of congratulations, then you are just selfish and making their big announcement about you. If you politely decline an invitation to yet another baby shower, you are too focused on your own problems and need to "just stop thinking about it."

The sad truth is that we probably aren't avoiding baby showers because of jealousy or selfishness. We are avoiding them because we don't want our childless state to become a discussion topic. By the age of 25 or so, we've all experienced the onslaught of ill-advised and somewhat heartless advice that people assume we need to hear. We've all heard plenty of new moms complain about how horrible her life is. We've all listened to pregnant friends whine about how awful pregnancy can be. We care enough about ourselves to avoid more stress. 

After nearly two years of "trying," we decided to wait a while. We aren't trying to become parents, but that doesn't mean we aren't thinking about the possibility of never getting the plus sign so many people post on Facebook.  It doesn't take away the pain when people ask why we don't have kids yet. Or when people assume we don't like kids because we don't have any yet. And it doesn't take away the bittersweet feeling that hits you when you hold a baby. And it doesn't take away the feeling of failure when you have to explain to yet another stranger why you don't have kids. 

Society expects women to have children and, despite the prevalence of infertility, no one seems to remember that the person they are interrogating about a very personal part of their life may be in the middle of a very desperate journey to do exactly what they are judging her for not doing yet. 

My obligatory... but late... 2014 review

I've written, re-written, and deleted multiple versions of this review.  2014 was my 10th year of blogging.  My 2004 review was on Xanga, then they moved to MySpace, then to Facebook, and now, I post my random thoughts on a real grown-up blog.  

I've struggled with what to write in review of 2014 because this is the first year that I've really felt like the New Year really means something.  2014 was full of medical issues, family stressors, and worst health scare I've ever experienced (and hopefully the worst I'll ever experience).  I lost weeks because of surgeries and headaches. I spent so much of my time in waiting rooms and awaiting test results that I can't imagine how much productivity I lost. I could feel sorry for myself, but then I realize that somehow I kept up in my coursework. I maintained friendships.  I still helped others when I could. It taught me to notice what I've overcome instead of focusing on my problems. And I'm focusing on how great 2015 can be.

Towards the end of 2014, I had a conversation with a colleague about my health issues.  It went something like this:

Him: "So how are you feeling?"

Me: "I'm doing great."

Him: "So what did they decide was wrong?"

Me: "Well, my surgery was for pelvic pain issues, but we also discovered that my spinal fluid pressure gets too high so I have headaches, my optic disc can swell, and I can hear my heartbeat sometimes."

Him: "What do they do for that?"

Me: "I had a couple of spinal taps and an epidural blood patch when it was high, but after those and some pretty strong diuretics, I'm feeling a lot better.  I just have to focus on maintaining my exercise and watch for returning symptoms. It's chronic, but it's not a big deal right now."

Him: "I'm sorry to hear you're dealing with that."

Me: "Well, it's my new reality--so I've got to figure out how to live with it and still do the program."

Him: "Well, that's a hell of an attitude.  I'm proud of you."

It made me realize that I want people to think that about me all of the time.  I want to be positive.  I want to focus on the good. I started working out last September.  I got a personal trainer, started working out 4-5 days a week, and discovered yoga.  So in 2015, I'm focusing on how great things can be and how much more I can do.  

So in 2015, I will:

1. Complete [at least] 108 yoga classes.

2. Be mindful.

3. Learn. From. Everything.

I have completed 30% of my PhD program.  I'm learning more and more every day.  I'm thinking of research questions that are interesting to more than just me.  I've got some great friends, awesome mentors, and a group of fellow yogis cheering me on.  

2014 is over [thank God] and 2015 is going to be great!