What do you want from this website?

In my last, pre-vacation, post I proposed the idea of starting a private Facebook group or other online forum. I want this website to be about building a positive, supportive community rather than being a platform for a single voice, and I figured that was the best way to go about making that change. I invited you to contact me if you were interested.

None of you responded.

Is there perhaps some other direction you would like to see this website take? Another way to build community here? Would you like to contribute posts, be an editor for a section, help with web design...?

When I started this blog I wanted it to be what wasn't there for me ten years ago - a place with quality information and education as well as a vibrant, hopeful, community. I wanted to know that I wasn't alone, to connect with other women as well as resources to help me get better.

I figured that I would learn from my readers about how specifically to do that as I went along. But y'all have been pretty quiet. I'd love to be able to do more and make more for all of you, but I don't know what that is without your input. 

So I humbly ask, what would your ideal v pain support website look like? What do you want to see here? How can I reach you and make this relevant?

I have tons of ideas about what I could do, and lots of information to share, but unfortunately I lack the technical skills to make many of those happen any time soon. For instance, my current host Squarespace makes it very easy to build a site but doesn't provide a robust way to save it; missing this foundation, I don't want to put tons of effort into work (such as learning how to make and upload quality audio or visual interviews, or finding a way to accept payments so I can pay a third party to host a forum) that I could then lose.

In order to execute many of my ideas, I would need some kind of financial support, either by turning this into a business or non-profit. But I can't do any of that without knowing who it is I serve and what they need.

In short, this website has TONS of potential, but it ain't gonna get nowhere without a little love from you, ma cherie.

So holler at me and let me know how to make this thing work - I want to hear first and foremost what you want and need from the website. Interviews with researchers? Doctors? Complementary care providers? Articles about the biology of pain, spirituality, family life, how to have a sex life? Articles about anatomy and research? Dealing with insurers? There are so many directions this could take!

I would also like to hear what skills and talents you can lend to make your vision happen. Would you like to get paid to build this community, as an employee or freelancer for a business or non-profit? Do you know anything about building a movement around a taboo topic, accounting, web design, writing, research? Could you, would you, be a mentor or advisor or board member? If we can dream it we can do it.

* * *

As it stands, there are a lot of us suffering in isolation. If we can find a way to connect to each other and make our stories and voices heard, we can create change not only in our own lives but also within the medical profession and society at large.

I would like to live to see the day when v pain is as commonly discussed and researched as breast cancer. Once upon a time that too was a squeamish topic mostly avoided, and think of how much worse our lives would be if that had never changed.

All over the world women are stepping out and discussing and making change in so many deeply painful areas that used to be shrouded in silence: domestic violence, miscarriage, infertility, addiction, abuse, rape, sexual harassment.

V pain is yet another frontier in which we are being called to teach the world and ourselves how to respect and value female bodies and experiences.

So take a few minutes to think and dream about the support and knowledge you wish you had, and to reflect on the skills and bravery that you already possess, and tell me what you come up with. I look forward to hearing it!

Thank you, thank you, thank you!

Any interest in a Facebook forum?

One of the features I would really like to have on this site sooner rather than later is a forum, a way for you to connect with each other. I have looked into various ways of doing this, but for many reasons (time, money, lack of technological expertise) none of them are going to happen any time soon, with the exception of a "Closed" Facebook group, the most private of the three Facebook Group options. (You can learn more about the levels of privacy Facebook offers groups here.)

Would anyone be interested in joining such a group? If so, let me know where to find you on Facebook - I can't start one without people to invite to it.  I also would like to know what you are interested in in terms of ground rules for the group. What guidelines would make this space safe and appealing? (You can respond in the comments below if you would like to start a conversation, or contact me privately here.)

If you aren't interested in a Facebook group, but would be interested in some other type of forum, please let me know why Facebook wouldn't work for you and why the other option would.

I know that all of you have knowledge and experience that is just sitting there waiting to be shared and leveraged! If there is some other way that you would like to participate in some kind of group support, holler at me.

* * *

PS Tomorrow I am headed out of town for three weeks of much needed vacation! Woo hoo! I don't plan on writing unless the spirit moves me, but I will be watching my inbox, so if folks want a Facebook group I can probably toss that together on the road. 

This Week

This Week

Monday Morning Osteopath appointment. He can't help, refers me to someone else.

Tuesday Morning Therapist appointment.

Tuesday Afternoon Osteopath appointment. It's a miracle I got in last minute! No, it's not, the front desk made a mistake and only booked me for a brief consult, not a full appointment. But someone cancelled for tomorrow...

Wednesday Morning Full osteopath appointment.

Wednesday Noon I am supposed to go to a Feldenkrais class - osteopath #1 recommended it - but I can't summon the energy to drag myself out of the house again, so instead I nap.

Wednesday Afternoon PT appointment. 

Wednesday evening Now. I still hurt.

Blerg.

So. That has been my week.

It is that kind of day, inside that kind of week, inside that kind of month, which is turning into that kind of season: months, plural.

Back in December I flew to the East Coast. Stood up at the end of it, only to have my left knee buckle under me; it has hurt ever since. So I started PT. That sent me into an insane v pain episode (because to help the knee, they needed me to increase my core stability, which meant engaging my glutes, which sent my pelvic floor into an insane spasm...now we know why I wasn't so stable to begin with, I suppose.) I finally got it to calm down and resumed PT, but this time the deep right hip rotators and pelvic floor muscles and SI joint all started freaking out, bouncing the pain around my left hip area like a ping pong ball, until at the beginning of March it lodged in my SI joint, where it has remained.

Since then, I have been in constant pain, made worse by any kind of flexion (i.e. bending) in my right hip. So anything other than standing or lying on the floor makes it worse.

I open my eyes and sit up to get out of bed in the morning. Worse. I bend to wash my face. Worse. And so on and so forth. I have had to cancel or get subs for all but two of my yoga classes since then. I eat standing up.

On top of this, I keep having Mysterious Vomiting Episodes. They don't follow any pattern, other than that all of a sudden I will have to retch like crazy - doesn't matter if I have food in my stomach or not - and they generally end after 15 minutes or so, except for one that lasted five long and miserable hours.

Of course, it is near impossible to vomit standing straight up without bending, which means each Mysterious Vomiting Episode makes the SI joint pain worse.

And my three months of diligent knee PT exercises, the ones I stuck with no matter how much I had to modify or reduce them in order to accommodate the SI craziness? They have not helped my knee one damn bit.

* * *

I feel like I'm living in a bombed out city of a body.

Nothing's really working. I keep trying to live my life, do my routine, make plans, set goals, only to have to re-schedule (again and again), and cancel (over and over), and make the goals smaller and smaller and smaller until that task or project barely exists.

I don't know what the hell I'm doing. I start the week with a schedule and then it gets slowly eroded until its unrecognizable. Haircut? Erg - gotta reschedule, doctor has an opening. Helping a friend while her husband's in chemo? Crap, I managed to get there fine a couple of weeks ago but this week it's worse and I can't sit in the car long enough to get there. Maybe I can re-schedule? How far out? When will this be okay again? 

Nothing in my extensive kit of self-help tools is working. My old routines and schedules and Stuff That I Do has mostly fallen away; teaching, working on this website, the morning yoga practice, the bike riding, Tuesday afternoon grocery shopping, sitting, and writing or reading or watching tv.

I used to be building something: my yoga classes, the website. Now if I so much as drop a hair clip, instead of picking it up I look down and think, how much do I need that hair clip? My feet are cold - but are they cold enough to warrant bending down to the bottom drawer to get socks? My days are stilted, each movement careful, the pros and cons of any and all action weighed. Building anything beyond my breakfast is a thing of the past.

Amidst this maelstrom, it seems as though everything has gone along for the ride.

My former favorite lipstick looks oddly off now, and after decades of loving tank tops and not liking tee-shirts I only want tee-shirts, and as of nineteen days ago I play the guitar. 

My mystified husband says sometimes I change so quickly it's hard to keep up with me. I hear your pain buddy, but lordy, try BEING me.

He asks me if playing the guitar makes me happy. I wouldn't say that, but it is soothing. It is medicinal. It keeps the screaming banshees of insanity at bay.

And if amidst this hell something will keep the screaming banshees at bay, I'll take it.

(Rosie lounging in the backyard. Many thanks to our friend Carlos for abandoning her in our garage when he moved to New York. I love her.)

Sick Today :(

Hey all, I woke up this morning vomiting and miserable. So no writing for me...but, I did think it was cool that the folks over at PHRC posted an email conversation with Lorimer Moseley a few weeks back (he's the coauthor of Explain Pain,) so I thought I'd share that with you instead.

happy wednesday!

My Teacher, Oxalis

Oxalis. This photo was taken a couple of years ago, on a sidewalk in Oakland.

A couple of weeks ago, I asked the weeds in my garden to leave. They did.

I asked them gently and politely, explaining as I pulled that I did so to make room for the madrones. Not yet two feet high, these madrones will grow to the size of a small tree, and they are the foundation plants for the California native plant garden that already grows in my imagination and will soon grow just out my back door.

"I know these madrones don't look like they need room," I whispered, "and that the space around them looks like it is available, but it is not. Madrones need elbow room, darling. I see that you came to say hello and give me a much-needed reminder for me to spend time here in the corners of the yard. I hear you. I'm listening. Now go tell your brothers that this space needs to stay clear for the madrones and the other natives I'll be planting."

I got the bulk of my weeding done that afternoon, but when I went back to finish a couple of days later the remaining plants were wilted on the ground, the life force no longer there. A few here and there still looked alive, and so I gently pulled them only to find anemic roots, ones that wouldn't have sustained them for long.

* * *

For the record, these particular weeds were oxalis, one of the most notorious weeds in my area. They look like clover, but they sprout bright, bright, yellow flowers in the late winter and early spring. Looking dainty, they are so persistent that they will crowd out and therefore kill everything around them. When you pull them up, they leave seeds behind. They are, by local lore, nearly impossible to get rid of, a gardener's curse. I know someone who as a test cut them at the stem and painted Roundup on the exposed part (conventional Roundup application doesn't do anything.) She said it worked. Impractical for obvious reasons, but that should give you an idea of how tough these plants are. Other methods I know of for getting rid of oxalis are no less elaborate, including the classic, "Move."

And yet the oxalis in my yard were happy to bow out with a simple request.

* * *

I wrote recently about how my concept of healing is changing; rather than trying to fix myself, I am instead aligning myself with reality. 

The afternoon that I surveyed the wilted oxalis in my yard, I felt, on behalf of mankind, like a complete jackass. We drive ourselves nuts, cursing and dumping all kinds of chemicals on our lawns, gardens, and farms, when apparently all we need to do to get rid of weeds is start a conversation.

"Use your words!" we admonish our cranky three year-olds, and yet here we are, having forgotten not only our words but an entire way of being.

* * *

My talking with the plants did not end with the oxalis. As a person in search of healing I am a person in search of wholeness, and in watching plants respond to my thoughts I felt my role in the web of consciousness like I never had before. Something that had been there all along was suddenly apparent. 

So this is living through wholeness.

Remembering.

* * *

Original photo of a Pacific Madrone on Orcas Island, Washington, by and (c)2007 NaJina McEnany. Used under a Creative Commons Attribution-Share Alike 2.5 Generic License. Our little baby madrones in the backyard are too young to have developed their signature bark just yet.