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?

Pelvic Pain Runway 2

Hello Luvvies! I'm going to let you in on a little secret. I. Love. Maxi dresses. And I just found two awesome ones that I am going to share with you. Ta da!

Looking all dramatic with a belt and a ridiculous summer hat I bought at a hardware store. For some reason this pattern is not available online...? Click the photo for other colors.

The same dress with a sweater (duh.) If this doesn't say I-spent-all-day-at-the-beach-and-now-the-sun-is-going-down-and-its-getting-cold I don't know what does.

Being silly.

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Pretty bow in the back.

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That's it for today's pelvic-pain-friendly fashion round-up. If you have any photos you'd like to share, give me a holler over on the contact page!

Guest Post from Trudy Triumph

Guest Blogger Trudy Triumph writes at www.neurogenicbladder.me    She blogs about her real life, not a medical textbook, to empower herself and others to shed the shame, get real and be proud. This is a post she wrote addressing Pelvic Pain.  It happens for all kinds of reasons and having a neurogenic bladder and bowel is just one of them.

http://www.neurogenicbladder.me/2013/06/yearly-physical.html

Yearly Physical

I had my yearly physical last week. Thanks to my handy-dandy Speedicath catheters, I have not had a bladder infection for a while. I feel great and vibrant. I have only two more weeks of school before summer vacation. I seem to be rolling along with my urological issues just fine, for which I am truly thankful! The world is my oyster!

At the appointment I sent in blood to be checked out. There was a listen to my heart, a look in my mouth, my weight and height, blood pressure and the rest. I know that during my yearly physical the other parts of my body are checked. My bladder, bowel and nervous system are not a big part of the appointment.

During the exam, the doctor felt my ovaries. I have read that one in seventy women get ovarian cancer. There are distinct clues for ovarian cancer, yet many times it goes unnoticed. The conversation with my doctor went like this:

One of the symptoms of ovarian cancer is constipation, well I have a neurogenic bladder so I am always constipated, by bowel is chronically sluggish.

The other symptom is feeling bloated.  Once again I said since I am chronically constipated but use stool softeners, the bloated feeling is not a foreign one to me.

Lastly she said that discomfort in the abdomen is another clue.  Again I told her that there are a lot of reasons that I get twinges of pain once in a while.   It is just a way of life with me.

After the feel of my ovaries was over, they were a bit tender (which by the way is another symptom) but the topic was dropped.  We were on to the next body part.  The whole scenario was kind of an out of body experience. I felt a disconnect because I like my family practice physician. I wish that these great ships in my life, my doctors, were a little more aligned.  I have so many questions.   How do I, a woman with a neurogenic bladder and bowel, know if I have ovarian cancer? Are there other ways I can find out besides the classic symptoms? Once again I felt a little vulnerable.

As well as I feel now, I realize that I am a bit physically fragile. After the exam, the topic of ovarian cancer was dropped.  As I left the appointment I wondered if I should have asked the main question that burned in my brain on the way home….Should I settle for not being able to feel the classic symptoms? 

This is a perfect example of how we with disabilities need to be our own medical advocates. I plan on taking the issue a step further next year during my yearly physical. One more note for my medical journal.

Thank you for sharing the word and helping women.

---

Thank you Trudy for sharing your story. A chronic health problem masking a potentially fatal one is a scary complication to face. Pelvic pain can be so complex; it's rarely straightforward to identify where the pain is coming from, much less what that sensation indicates. All the more reasons to ask "our ships to align," requesting our doctors to communicate with each other so we can receive the best care possible.

Late Night Q + A: Vulvar Pain

Welcome to the first installment of "Late Night Q + A." Over the past decade, it was so hard for me to find help. I often found myself googling late at night, anxiously trying to find answers. Sound familiar? If that describes you, read on. Then go back to sleep!

Is it all in my head?

Nope, nope, nopity nope. Check out this Canadian PSA on vulvodynia (defined as "persistent vulvar pain with no known cause.")

Am I the only woman with vulvar pain?

Heck no! 

One study found that 8-28% of women experience persistent vulvar pain lasting longer than three months over the course of their lifetime.  Another study put that number at more than 25% of women. That means you are probably more likely to develop vulvar pain than get breast cancer, which has a lifetime risk of 12%. Or asthma, at 8%. Even heart disease, so well known in our culture, affects considerably fewer people than vulvar pain at 11% of the population.

If vulvar pain is so common, why is it so hard to get a diagnosis?

Good question. According to the book Healing Painful Sex: A Woman's Guide to Confronting, Diagnosing, and Treating Sexual Pain by Deborah Coady MD and Nancy Fish MSW, MPH - which I highly recommend - "There's no focus on sexual pain in medical education, no residency rotations, no fellowships." (p.38) That means doctors have to go out of their way to study vulvar pain; and frankly, why would they? Obstetricians are focused on pregnancies and childbirth, and gynecologists can specialize in any number of fields: surgery, hormonal problems, cancer, infertility. There are plenty of established options without having to go out on their own to study vulvar pain.

Of course...if we as patients speak up and demand better care, then one day there will be a focus on vulvar pain in medical school, and getting help will be easier for our daughters and granddaughters.

Will I ever get better?

Yup, yup, yupity yup. It may take a long while, and you may have to go through a lot of crapola to get there, but it is possible to get better. Again, from Healing Painful Sex: "Sexual pain is almost always caused by an identifiable, verifiable medical condition; it can be treated; and it is not in your head." (p.2) Phew! Thanks Deborah and Nancy!

Will I ever be able to date/marry/have kids/ have a career...etc?

Yes! See above. You can get better. 

During my worst flare-ups, I always felt like my life was ending, that I would be curled up on the couch forever, and that all of my dreams would remain just that. But over the last decade, my decade of vulvodynia, I also managed to graduate college with honors and Phi Beta Kappa, get married, create a great sex life with my wonderful partner, backpack through Southeast Asia, travel to Brazil seven times, move to a place I absolutely love, buy a fixer-upper, fix said fixer-upper, become an aunt...the list goes on. 

Did everything happen when I wanted it to? No. Am I where I want to be 100%? Not yet. Have I had to spend A LOT of time taking it slow and taking care of myself? Yes. But my vulvar pain has not stopped me from living a full, brave, adventurous life, and it doesn't have to stop you either. The choice is yours.

So how do I find help?

Start by purchasing Healing Painful Sex, available wherever you buy books. I wish this book had been out when I first started having pain, but even though it wasn't published until 2011 I still found it immensely helpful and deeply validating. The ISBN number is 978-1-58005-363-1.

In addition to providing a thorough run-down of the many different types of pelvic pain and how to figure out which category you fall into, the book has tips on how to navigate a medical world in which many doctors are ignorant and a social world in which the topic of sexual pain is taboo.

While you are waiting for the book to arrive, you can hop on over to the Resources page. Of special interest to the vulvar pain patient is the National Vulvodynia Association, and the Physical Therapist Locator on the Section on Women's Health site. 

Lastly, if you can go to one of Leslie Howard's pelvic floor workshops, I highly recommend it. Even if you are not a yogini (Leslie is a yoga teacher), you will learn a ton. I learned more about my anatomy from her than I have from all of my doctors combined. Bonus: you will be in a room chock-a-block full of women with pelvic pain, which will do wonders for your self-esteem.

Is it time for me to go to bed?

Yes. This is enough for you to get you started. Sweet dreams, little ducky!