Flare Update, Part 1 of 3

I've written about my most recent flare-up four times (here, here, here, and here, in chronological order of course!) Read on for the first of a three part overview and update...

* * *

When the pain started at the end of October/beginning of November, after a looong process of titrating onto a new medication and off another, it was right before the follow-up with my neurologist, the prescribing doctor.

He said that maybe "we hit a triple instead of a home run on this one." (I wanted to go off the old meds not because they didn't work, but because of some undesirable risks and side effects.) To be cautious, he recommended I check in with the rest of my health care team to make sure nothing else was going on.

The gynecologist was first. She gave me the all clear - the exam and lab tests did not show any new developments in addition to the complaint of dryness - and prescribed estradiol cream. I had used estradiol cream in the past and it hadn't made a difference, so I was skeptical...but then again I hadn't had dryness before. What the heck, why not? I figured.

Next came my appointment with my pelvic PT. By now it was December. She told me that my pelvic floor was in wonderful health, but to address the pain I could return to my old dilator exercises and mindfulness check-ins, when I consciously relax my pelvic floor throughout the day to keep tabs on any building tension. 

While the gynecologist and PT had given me good news, this good news left me wondering...if my neurologist, gynecologist,  and PT don't have a clear idea of what's wrong, then what's wrong? 

Awhile after my PT appointment, I finally got the estradiol prescription, which had been held up by various delays. I started using it, and within a week or so, I was thrilled to notice a major improvement. I wasn't back to my old "normal," but I was almost there.

When the pain emerged at the beginning of November I worked to stay calm and centered, even though it's strength and abruptness made me wonder if it would take another six month slog to feel better. I am so relieved to report that this turnaround happened over six weeks. Holy cow! Awesome.

* * *

The story, of course, continues. I had two follow-up appointments yesterday, one with my pelvic PT and one with my neurologist.

On Monday I'll write about what I learned at the PT appointment and Wednesday I'll dive into the many-faceted neurologist appointment.

See you there!

The New Year's Resolution I Kept

Hello, lovelies and a Happy New Year to you.

It's January, the time when shelter mags feature articles about home organization and "freshening up with color," when gyms enroll the most new members, and when the media earnestly discuss resolutions in a flurry of hope tempered with the experience of hindsight: the standard pieces about what to resolve and how to do so are alongside articles and news clips warning you that by February most of these new resolutions will be toast.

La dee dah.

In all my 32 years on this planet I have rarely made New Year's resolutions and only ever kept one of them, back in 2008: to get a massage every month. It is a resolution I still keep six years later. 

This came about because during the prior year I had spent much of my time in physical therapy due to three painful problems: severe wrist tendonitis, pain in my right foot, and yes, vulvo-freakin'-dynia.

The three different specialists I saw kept saying the same thing: that my pain was due at least in part to severe chronic muscle tension. What the hey? I remembered adults telling me as early as the 6th grade "Oh honey, you are so tense," but it had never occurred to me that there would be any further repercussions, that my muscles would start pulling tighter and tighter until it hurt to raise a glass, walk, or sit.

I had only received a couple of professional massages at that point in my life, but I had loved them. They were a splurge, an expensive luxury to be enjoyed only on the rarest of occasions, but after all the time and money I had spent on physical therapy this delicious treat no longer seemed particularly expensive or optional.

So, my project began, continuing through a cross-country move and tight financial times. I initially thought massage would loosen up my muscles, with the goal of pain prevention, and that in order to achieve this the massage therapist would "fix" me, a passive recipient. All I had to do was show up.

Instead the process was entirely different, with me an active agent and the results spilling off the table and into my life. 

I learned how to feel my own body. My newfound physical awareness allowed me to make better decisions: to move and be still differently, to feel pain or discomfort and respond appropriately. I learned which parts of my body seemingly always held tension but also noticed sensations that would come and go.

The physical awareness soon led to emotional awareness. Positions such as clenched jaws or a held abdomen didn't come out of nowhere: my body was responding to what was going on in my head and my heart.

Regular massage taught me that how I handled my physicality and my emotions greatly influenced what happened in my body. Not only that, it was a two-way street: by intentionally relaxing an affected body part, I could loosen the hold of a vexing emotional state. 

Massage became so important to me that I had to share it with others: I worked as a massage therapist for two years.

* * *

In the early days of this project I rationalized my monthly massages as a responsible medical decision, but long ago dropped that Puritanical stance.

I now embrace the fact that all of these mind-body benefits flow from the intentional pursuit of pleasure. By "pursuit" I mean "an activity of a specified kind," as opposed to the act of going after an as-yet-unreached goal. My pursuit of pleasure is very much in the here and now, a practice, not something out on the horizon.

The hobby of pleasure is an essential part of healing: if you don't feel good, and don't know how to make yourself feel good, then how will you reach that state without experimentation and many hours of practice?

This is obvious once you look at it, but I rarely meet another person who thinks the same. 

I continue my monthly massages to this day, and have the next three sessions already booked. They are mentally pencilled in for the next seven decades.

* * *

I don't have a dramatic New Year's resolution for 2015, but I have spent considerable time over the past week tying up loose ends, focusing my desires for the coming year, and creating more support and structure around them with the intention of their fulfillment.

I am taking stock of my strengths and for the first time in my adult life I have a pretty good idea of what I will be doing twelve months from now. 

My New Year's reflection has thus not produced a proclamation so much as an acknowledgement of a series of shifts, and the decision to engage with them fully.

We are neither passive recipients nor all-powerful lords in any area of our lives: making change is a dance, a back and forth between our inner and outer worlds:

Looking Back on 2014

Holy cow, 2014 is wrapping up.

For Christmas this year my husband and I will be back on the East Coast with twenty-five of my family members, all of whom are enthusiastic Christmas celebrators, so my attention over the last few weeks has been very much pulled in that direction.

Except for the rare occasions when my husband and I forego family travel and celebrate just the two of us at home in California, every year it seems I spend December anticipating end-of-year celebrations (which in my family lingers to New Year's Eve and sometimes beyond; or in my husband's family requires a trip to Brazil) and then wake up one morning completely surprised to find myself in a New Year.

This year I am trying to reserve some brain space to look forward to 2015...what do I want from this coming year? Where have I been over the current, waning one?

* * *

2014 began with my attention being drawn in numerous directions "professionally," as I continued to muddle my way forward. (I put professionally in quotation marks because I have never felt very professional, the entirety of my adult working life having been spent in a patchwork of various, mostly part-time, positions.) 

In 2009 I pivoted away from my decade-long expectation that I would go to graduate school for urban planning or another 3-D design field. For numerous not-quite-tangible reasons, it felt...off.

My experience with my body in my late teens and early twenties - anorexia, depression, vulvodynia, undiagnosed digestive issues, wrist tendonitis so severe that it left me out of work and dependent on my sweetheart to cut my food for me - rocked my worldview, upended my perceptions and expectations of myself and my life.

Clawing my way towards peace with my physicality had become so big that I was pulled towards helping people build rewarding relationships with their own bodies. I wasn't sure how, but bodywork and movement and energy medicine had been helpful to me and sharing those tools seemed a natural progression. I imagined that I would build a private practice in a group office with other allopathic or complementary care providers.

It didn't gel. 

I made a three year plan and followed it. Partway in I could tell it wasn't right, but I pushed ahead anyway.

I became a massage therapist, and a yoga teacher. I studied Healing Touch, an energy medicine, and put in a lot of volunteer hours at a clinic and a hospital. I realized that the goal of having a private practice wasn't right for me, but rather than admit defeat I figured that by adding writing and public speaking to the picture I could patch it up and make do...Despite these changes the pieces still didn't come together.

I finally admitted that while I have benefited immensely from the study and practice of massage and Healing Touch - as have my clients - the isolation of one-on-one therapeutic work is, for me, draining. 

Teaching yoga fulfills some of my needs: it provides community, a place to be "on stage," and allows me to support people through a physical healing experience - but there is much more that it doesn't address.

On the business side of things, I realized that from a marketing perspective helping just anyone relate to their bodies was too broad, so I narrowed my focus to chronic illness. My healing arts business contacts advised me that "chronic illness" was still too vague to constitute a niche. By this point most of my other health issues had receded, leaving vulvodynia as the one last hellish outpost and the obvious choice for further specialization. But I resisted. Too close. Too shitty.

Where the hell was I going? I kept walking towards a business model that didn't fit my talents, in service to an as yet undefined population. 

Last December I was planning to throw in the towel; I would start taking physical therapy pre-requisites in the spring, go to school, and get a real job.

The universe had other plans. I went to one day of chemistry and my soul caved in; I was waitlisted and didn't get into that or any other required courses. PT schools require that you work in a PT office prior to admission, but despite my overqualification and willingness to accept the pitiful pay advertised, I didn't get any of the positions for which I applied.

Besides, I didn't really want to become a physical therapist. I just wanted to solve the problem of how to help people struggling with their health and get a paycheck for it.

Just as the PT plan unravelled, a couple of key events pulled me back to the healing arts. There had to be a way I could make this work. I bit the bullet and decided to focus on serving women with pelvic pain. Maybe that would provide the focus I needed?

Not really. It didn't solve the fact that I don't like the isolation of therapeutic work. And I was tired of constantly pushing ahead without the support of outside structure. 

"Grad school!" a friend advised. "Thesis work provides the umbrella for you to research what you wish in addition to much-needed deadlines and mentorship; if you like the ideas behind healing more than facilitating the healing, get a PhD and teach."

I looked into it, spending the late spring and early summer finding programs I had never heard of (did you know there is such a thing as medical anthropology?) I perused public health degrees, a master's in yogic studies...But none of them appealed. My husband and I have a house and a life in our town, and neither of us wanted to take on student debt, pick up, and move.

In July I started this blog. It was something people had recommended over the years, a suggestion out on the periphery that had spiraled its way inward. Between my desire to write, to reach women with pelvic pain disorders, and with the tenth anniversary of my diagnosis approaching, it seemed fitting. Besides, my health was better than it had ever been, and it seemed like I might finally be out of the woods, so the blog wouldn't be a dirge about how much life sucked.

Being the grand dreamer that I am, I imagined that a website could provide me a much larger platform to help women with pelvic pain disorders. Rather than working one-on-one with a select few, I could facilitate the coming together of a hypothetically limitless number of women. A website could serve as a community and a source for education: interviews with pelvic pain experts, allopathic and complementary care providers, videos of yoga classes, tips on finding and building the networks of emotional and medical support women need to pull themselves out of the isolating hell of pelvic pain.

Could a website be a way out of the swamp?

I knew that question could not be answered with thinking or researching, only doing. In an effort to start somewhere, the blog it was. 

The creativity and satisfaction of producing a concrete product revived me. It gave me clarity. Not overarching, big-questions-in-life clarity, but what's-the-next-tiny-step-I-take clarity. 

After starting the blog in July, August brought a shake-out.

I left my two massage and bodywork jobs, finally saying no to the guilt that had propelled me to stay.

I stopped teaching Pre-Natal yoga, a class I had had mixed feelings about for a long time. Back in May I had started teaching Yoga for Chronic Illness, and preferred to put my energies toward that nascent but more fulfilling project.

I started an official hiatus from my Healing Touch studies; after three years of studying and practice, I am 80% of the way to meeting the requirements to become a certified practitioner, which would allow me to shift from volunteer to paid work. And yet...the last few hurdles don't seem worth it. That goal was part of an old plan, a plan that has fallen apart and not yet reconstituted itself.

While I felt completely done with doing massage, I didn't throw the Healing Touch baby out with the bathwater. I dropped my official studies, I walked away from a weekly hospital volunteer post that I didn't enjoy, but I have continued the clinic volunteering that has fed me for three years with its warmth, community, and guidance.

I did not drop these obligations lightly.

Over the last decade, most of my jobs haven't lasted more than a year. Right after college it was legit to shop around for a good fit, but when I chose a direction, pursued a plan, and still didn't get anywhere, I began to feel like a flake, doomed to wonder the earth eternally, never staying long enough in one place to grow roots and flourish. 

For this reason some people around me, including one whose guidance I value highly, did not encourage what appeared to be a reiteration of my self-destructive pattern of not finishing projects. My elders chided me for idealism and perfectionism and a lack of seeing reality for what it is. Yes, and.

At the end of the day I have to make my own mistakes, and I didn't want to continue the mistake of stubbornly pursuing things that weren't going anywhere. Yes, I have more ideas than I know what to do with and consequently abandon a lot of projects. Maybe it's time I re-frame that as part of my creative process and role with the punches.

I may not finish everything I start, but fear of commitment is not my issue.

I've been in the same loving relationship through all its crazy ups and downs for eleven years; I got married when I was only 24. Three years ago we bought a house together with the plan of staying in it beyond our 30 year mortgage. And even though my professional vision hasn't materialized, I have diligently pursued it.

Despite my doubts and the doubts of others, I re-prioritized. By October a new order was established. Healing Touch and bodywork were in the hobby box. "Professional" focus was now yoga and the blog-someday-website.

And then?

In November and December I slid into the mists. I neglected the tasks required to grow the website. Without a team to hold me accountable, I did so without consequence. Thrice-weekly posts provided cover while my intentions faded. Faint wisps of intent are not enough to drive action, so that job was taken on by robust but stealthy doubts. 

I am a flake, doomed to wonder the earth eternally, never staying long enough in one place to grow roots and flourish.

I was anesthetized to this quiet process by the challenges and distractions of the rest of my life, all capable of taking up whatever time I had under the guise of legitimate need. 

In these final days before my trip back east, I am forcing myself to turn and look. Salvage my efforts so the November/December slide doesn't continue into January. Remember the foundation I built in October, the desire that drove it.

Where do I stand? 

* * *

If you have actually read this far, I am surprised, as I am equally surprised that I wrote this far. 

This morning I only intended to pen some holiday wishes and let you know that I won't post again until January.

Whenever I hit publish I never know whether my words will ever serve anyone but me. I have no idea who reads this, and as far as I can tell, my readers are a quiet lot and small in number. I would think you a figment of my imagination except every once in a while I get the odd comment or a brief email.

If any retrospective of the last year would have served you, oh not-quite-mythical-beings, perhaps the twists and turns of my medical journey would have been the more relevant choice.

But as I wrote on Monday, chronic illness finds its way into all the nooks and crannies of my life, even my professional aspirations.

I am not the only woman whose pelvic health problems have inspired a professional path - I know a physical therapist, yoga teacher, and a somatic psychotherapist who fit the bill - and I am hoping that just as these women so beautifully serve their communities, I too will someday serve mine.

I guess this retrospective is relevant after all.

Many unexpected hours after I sat down, I am glad I wrote this. The mists of the last couples of months have been laced with dread - what the hell am I doing? - which looms larger with the expectation of purpose that a New Year brings. 

Facing and acknowledging the demons has left me lighter. I haven't solved my problems, but apparently I didn't need to. A tallying of accounts was enough.

I leave my work tidy, a neat package I can pick up in January. 

* * *

As for 2015? Apparently that is a post for another day...

Gettin' yer sexy on...Yes, it's possible

Highly relevant post over at ChronicBabe.com this week!

Jenni answers a great question from a reader, "How can I learn sexual confidence in spite of my illness/disability?"

I hope that her answer will be of use to you. I found it very encouraging since it reminded me of the fact that pelvic pain sufferers are not the only folks challenged with creating rewarding sex lives. Yup, it affects other folks with chronic illness, and let's face it, pretty much any human being.

Sexuality is about the whole person, not just the parts.

Remember to read the comments to see additional resources suggested by the awesome Chronic Babe community, and hear about their challenges and successes. 

Here's to a randy weekend!

* * *

A note on the heart graphic:

One of my Women's and Gender Studies friends in college told me that the heart symbol evolved from a stylized depiction of a woman's vulva, viewed straight on, with her lifting the top two corners to show it off. I have no way to verify this, but I love the idea of replacing the heart's sappy innocence with something brash and carnal. It makes me smile a subversive smile whenever I see them...Rowr!

Patient Interview on Blog About Pelvic Pain

Hey all, in the spirit of encouraging community, I thought I would share this great post with you from Sara Sauder, PT, DPT at Blog About Pelvic Pain: 

Interview with Julie

Thanks to Sara and Julie for sharing! Reading about other people's experiences helps me get through my own.