The International Pelvic Pain Society's Annual Fall Meeting Comes to a Close

As I write this it is early Saturday evening and I am on the Blue Line train headed to O'Hare.

There are more sessions tomorrow for providers who want continuing education credits, but for me the IPPS Annual Fall Meeting is over.

It's hard to believe that less than a week ago I was telling you how nervous I was for this conference. Despite my initial jitters, it was so...easy.

At the end of each lecture there was time for comments from the audience, and individuals making said comments were asked to introduce themselves. Aha! Opportunity knocks! I asked a few questions to the early presenters, so people would know me (I figured this technique out at the BlogHer Conference this summer.) When I introduced myself, I did so in a memorable but not over-the-top way, put my intelligence and humor on display, and...it worked!

For the rest of the conference whenever I introduced myself, people would respond "Oh, you're the blogger!"  Victory!

I was happily surprised by the warmth with which I was received.  The majority of attendees were physical therapists, who generally develop deeper relationships with their patients since they get to spend more time with them than doctors do. Being well-acquainted with the struggles of their patients, and well-aware of the negative impact depressing chat rooms have on patient morale, they could see the need for positive patient-to-patient interaction on the internet. (The doctors I met did too, FYI.)

Some attendees wanted to ask me questions about the patient experience: How do I start a support group? Will patients respond to an invitation from me even though I am not a patient myself? I get so upset when patients fail to comply with my recommendations, how can I build trust and help them help themselves?

One keynote speaker even took it upon himself to introduce me at the Friday night cocktail hour to as many people as he could. "Faith, you should meet so-and-so!" It was great, and I was and still am deeply appreciative to him. I think it speaks well not only of his character but the tone of the society that someone who could have easily overlooked me instead welcomed me and did his best to integrate me into the group.

My mind is on autopilot right now, as it reached full capacity a while ago. It is bubbling with questions, ideas, visions. I learned so much - there were ten presenters on the first day alone - and it will take a while for me to wade through the swirl of thought bubbles and turn them into useful information for you.

In the meanwhile, I am so glad I took this leap. Fun fact: as recently as this past May, I wussed out on going to the Alliance for Pelvic Pain's Conference (which is for patients, and therefore wouldn't have been so scary, right?) At that time I already had the idea for this blog, but was waffling. I wasn't quite ready to share this part of my life with the world. I was scared of being vulnerable and exposed. Getting to a point were I had the guts to attend not only a conference, but one for which I was not "qualified," has shown me how much I have grown in only six months.

You may not think of attending a conference as being a healing agent, but for me it was. More than anything else I have done, attending this conference normalized my experience. Everyone spoke about pelvic pain out in the wide open public! The signs saying "International Pelvic Pain Conference - 4th Floor" or "International Pelvic Pain Conference - Registration" were out alongside the signs directing people to the knitting convention being held in the same hotel. The bathroom chit-chat on breaks breezily used such terms as "vaginal" or "vulvar" or "uterine," regardless of the non-attendees waiting in line alongside us. This group of professionals were more comfortable with communication about pelvic pain than even my old support group, whose members had so many past traumas about their pelvic pain that opening up about it was a challenge. Not these folks. They live and breathe painful pelvises and if they have ever had a shyness or an unwillingness to discuss female anatomy, those days are long gone. 

I was touched by how much the attendees cared about helping their patients get better, and saw that many of my frustrations were theirs as well. They too were upset that most medical professionals don't know about pelvic pain, that their patients often showed up to them in tears after years of failed attempts at getting appropriate care, that insurance wouldn't pay them for the time and attention needed to work with people facing the complexities of chronic pain.

It was comforting to be surrounded by 380 people from a variety of specialties who knew what I was talking about, could empathize, and were invested in making my life better. Everyone there realized that our numbers were small given the immensity of the problem at hand, but knowing that there are wonderful clinicians out there - few in number though they may be - made me hopeful.

Yes, this conference was great. Owning my pelvic pain, instead of detracting from my happiness, has instead added to it. Who knew?

Yay!

Here are some fun photos of Chicago I thought I would share with you:

The skyline with the Lurie Garden at Millenium Park in the foreground.

The edge of Lake Michigan. I love that the two boats on the left belong to the Oakland Park District - I wonder what they are used for?

Another shot of the lake.

I spotted this along South Michigan Ave...Swami Vivekananda spoke at the Parliament of the World's Religions at the Chicago World's Fair in 1893, became a well-known orator in the United States and Europe, and is widely credited with introducing yoga to the West - which is why I know about him, and why I took this photo.

Tables set up for chess players on South Michigan Ave. It was fun wandering through the river of big city life, getting caught up in the flow and then pulled into an eddy like this scene, a point of slowness and concentration alongside the zooming current inches away.

Good Times

Hey all! Last week's posts were inspired by a trip to Florida with my in-laws. This week I thought I would share some images from the trip and thoughts I had, for funsies....

Here's one of the postcards I sent out:

We started out in Orlando cuz the in-laws had to hit up the theme parks and the outlets. Theme parks and shopping? This is exactly the kind of trip I would  never take. But as my sister says, we have family so we hang out with people we never would otherwise, so off I went, determined to go with the flow and have tons of fun.

And gosh darn it I did. 

I screamed on the roller coasters, stared in awe at penguins and dolphins, and went on every ride at the water park. I made up fairytales featuring my niece and her favorite Disney princess, Cinderella, as the heroines. I ate my weight in candy, and went along to the outlets and happily got some great finds.

It was really great having an opportunity to be with my in-laws in an energetic and happy, pain-free state, something I have (almost) never experienced.  This trip was even more fun than my first trip with them - before I developed vulvodynia - because I have grown so much and become a much stronger, more relaxed person. 

I share this to let you know that there is light at the end of the tunnel, that you too can heal your body, mind, and soul. Pelvic pain won't necessarily be around forever. Keep truckin', darling.

Good things await!

Legacy

What is your life about?

Over the past decade, so much of my distress about being chronically ill stemmed not only from pain and fear of pain, but also from the fear that my life would be small, that I would not accomplish what I wished because of my limitations.

I recently heard an interview with a coach named Remy Chausse, who mentioned that our legacies can be a "beingness" instead of a "doingness;" that our gift to the world is not what we do, but how we do it.

I find in that little nugget of wisdom a great relief. A state of "being" is accessible to anyone, anywhere, while many types and ways of "doing" are restricted. I will never be a professional basketball player, or climb Mount Everest, but I can BE any way I want to be, and I can bring that wholly unique beingness to the things that I am able to do.

This concept lifts the question that plagues so many of us angsty Americans, "What should I do with my life?" Suddenly, finding the perfect job or spouse or living arrangement is not the goal, but rather showing up completely to whatever situation presents itself. This shift allows our need to control our external circumstances to fall away, while opening an easeful passage to attracting the structures that will most support us.

My life will therefore be as small or large as I choose, as disappointing or magnificent as I allow it to be. This notion is wonderfully comforting, satisfying my ambitious side while at the same time orienting me to what matters most in life: love. Being in line with my highest and best self.

No matter the ups and downs of your pelvic pain journey, I hope you remember or at least consider this idea. Yes, pelvic pain brings with it many losses, an erasure of some "doings," permanently or temporarily. But do not count among these losses your ability to live a rich, full, beautiful life. 

Healing is Easier when You Love Yourself

If you had asked me ten years ago if I loved myself, I would have said "Of course," and not given it much thought. Yet I have come to realize how little that was true.

Over the years, I have slowly noticed the many not-loving things I do and say to myself on a regular basis. Tracing back their origins, I see that these actions and thoughts were born from my upbringing, the culture I was raised in. Like most Americans, I was raised in a competitive environment. "Achieve, Succeed" was the mantra, and I was taught to push myself harder and farther, to excel, because nothing less was acceptable. Being okay was always another achievement away, tantalizingly close but forever out of reach. Accepting oneself in the moment seemed akin to failure - not only failing yourself, your family, your school, your community, but also God.

I took the mantra to heart and beat myself relentlessly. Years later, having left the religion of my birth, finished school, moved across the country, gone to hours of therapy, and adopted a new value system, the attitude remains. I am still learning how to quiet the incessant overseer of my mind, and listen to my higher self instead:

I am enough.

Exactly as I am today, with all my gifts and flaws, I am enough.

It has taken me a long time to realize embracing this attitude won't lead to atrophy. Quite the opposite. This change has redirected the energy I used to spend on anxiety and self-hate into the more pleasurable and productive activities of growing and learning, taking on new challenges and being ambitious.

And yet now and again I catch myself taking something as Truth that is not. "My work is not good enough," I might think, or "I don't measure up to so-and-so." I am grateful when I catch myself, because then I have the opportunity to correct the situation, amend it with love. "This work is excellent," "so-and-so has beautiful gifts to bring to the world and so do you."

Learning to love myself is a process that I will take the rest of my lifetime. And I am so glad to be doing it. 

As far as my background with pelvic pain goes, experiencing illness as someone who hates herself is much more difficult than experiencing illness as someone who loves herself. 

It is easier to look for help when you love yourself. It is easier to find and be a part of a community. It is easier to speak up for yourself at the doctor's office, to do your physical therapy exercises, to ice diligently when you love yourself. The whole process of healing becomes easier, more gentle through self-love.

Think of this post the next time you blame yourself for being sick, or beat yourself up for not getting better faster, or decide that you must be a loser because your illness prevents you from doing X. Take all of that frustrated energy and transform it, re-direct it with love.

We cannot change the facts of our illness, but we can endlessly transmute our response to it. That is where our power lies, our character lies; that is where we become who we want to be, regardless of the circumstances of our bodies.

When I look at who I have become through pelvic pain, I am very proud of myself. I have chosen to be tough, to be gentle, to never give up; I have chosen to be compassionate, to understand, to nurture.

I chose love.

What do you choose?

#imEnough

On Saturday at the BlogHer conference (again, I know) I saw the new band The Mrs introduce their first single, "Enough." The song brought tears to my eyes and I was not the only one. Here's the song, and the inspiration behind it. And if you are as pumped as I am about this development on the pop scene, here's where you can buy swag.

If you are anything like me, your pelvic pain has done a number on your self-esteem. Think of this single as good medicine. Yes, you may have pain, but you are not broken - you are enough, just the way you are.

Can't wait for The Mrs to come out with a full length album and go on tour. I'll be in the front row, screaming like a teenager!