Awareness Isn’t Enough

As much as I love Endometriosis Awareness Month — because for such a common condition, it is too little known and too greatly misunderstood — I kind of hate it as well. Yes, I get that it’s a first step, but really?

I’ve lived more than half my life now with endometriosis symptoms — and I expect they will continue for decades to come. Awareness isn’t enough for me anymore.

I want shorter diagnostic delays. Right now, it sits between 7 and 12 years depending at age at symptom onset and the types of symptoms presenting. Certainly, some of that has to do with the reality that laparoscopy is a rather expensive and invasive diagnostic tool. However, as the same linked source mentions, “Diagnostic laparoscopy is not required before treatment in all patients presenting with pelvic pain.” In other words — and this should be common sense — it is possible to treat a person’s pain without cutting them open.

I want health care providers to make recommendations based on the sum of current medical evidence. I don’t want them to limit their evidence to what published studies were available in 1990 or 2000. I mean, I got rid of all my New Kids on the Block tapes, and I’m no longer worried about Y2K. I have moved on, grown older and wiser — and I expect no less from my medical providers.

I want more health care providers to use patient-centered, multi-faceted management strategies. The main reason I prefer my general practitioner to a specialist is that all the local specialists I’ve seen have been single-mindedly enthusiastic (okay, so we call that “pushy,” right?) about their pet treatment options regardless of my concerns and priorities. Even if it is the next new thing, it may come with risks — and “no long term data” can count as a risk — that make it unworkable for some patients.

I want society to treat pain as a legitimate health issue. Not just when it’s the result of a physical injury, not just when it’s impairing mobility, not just when it correlates with infertility. Significant, persistent pain is a big deal because it is significant, because it is persistent, and because it is pain.

I want family, friends, partners, coworkers, and employers to appreciate the frequency, duration, and severity of endo symptoms. Specifically, that these symptoms often extend past the days of one’s menstrual period, that some people experience symptoms daily, and that living with chronic pain can be debilitating. I want to avoid being trapped into unreasonable expectations of what I “should” be able to do.

And yes, awareness is valuable to the extent that it is the first step to all of these. But on its own, awareness is not enough.

Endo Assumptions

So it’s Week 4 of Blogging for Endometriosis Awareness.

First, I would like to say that it’s about time spell checkers start recognizing endometriosis. I have seriously added it to my browser’s dictionary at least a dozen times; it keeps “forgetting.”

Second, the prompt for the week looks like this:

Your favorite things/tips/coping tools that have helped you stay encouraged in spite of illness (suggestions: endo survival kit, advice for newly diagnosed, top 10 most annoying things you can say to someone with endo, etc)

As it happens, one of my favorite coping tools is verbal venting. And that “annoying things you can say to someone with endo” thing? That sounds great. Only I’m going to change it to “annoying assumptions” you can make.

Note: I’m going to phrase this as a “you/me” thing because:

• Different people with endo have different assumptions made and find different assumptions aggravating. Though we may have points in common, I don’t intend to speak for all of them.
• As I write, I’m remembering various people who’ve voiced these assumptions to me over the years (where “over the years” includes the decade and a half when I was symptomatic but undiagnosed). It’s easier for me to write this way, but I am not trying to suggest that current readers have made any or all of these assumptions.

Dear humans of Earth (and other entities as applicable),

If you’re reading this, you know at least one person with endo: you know me. According to best estimates, the odds favor that you know at least one other person with endo as well. I cannot speak for all of them, but I know that some of the assumptions you make about my condition and my life have begun to… grate.

Consider this letter a plea to check those assumptions at the door.

Which assumptions? Glad you asked!

1. Don’t assume you can tell my pain level from my mood. — It’s true: Sometimes I have bad pain and am in a bad mood. However, it does not necessarily follow that being in a good mood means I have no or low pain. Sometimes, I can be in average-for-me pain and still in a good mood due to other happenings in my life. Conversely, sometimes I am in a crap mood for reasons mostly or entirely unrelated to endo.
2. Don’t assume you can tell my pain level from my activities. — I mean, yes, if I am curled up somewhere in the fetal position, chances of intense pain are pretty high. However, just like not all pain levels are the same, not all pain types are the same. There are certain situations — usually involving familiar situations and steady as opposed to spiky hurt — where I can participate despite a high level of pain.
   

3. Don’t assume being in pain means I don’t want to do something. — Sometimes this is true for me, yes. But other times, pain means I can’t do something or can’t do it safely. And sometimes, I still want to participate, but I’m not sure if my inclusion at this pain/focus/energy/mood level would be a burden to you.
4. Don’t assume my inconsistency is an excuse. — Endo is inconsistent; life is inconsistent. All pain types are not the same, and it may very well be that I could do Thing X in Y Pain last week but cannot this week. It doesn’t inherently follow that my actions were dishonest in either case.
5. Don’t assume that I’m always on painkillers, that I can always be on painkillers, or that I like being on painkillers. To clarify, I am referring to narcotic pain medications since I’m pretty sure no one is worried about me getting high on naproxen. First, I am prescribed too little medication for my pain duration and frequency. Naturally, I ration them as if each pill were made from liquid gold; the number of times my pain levels might warrant taking such a medication is significantly higher than the number of times I actually take it. Second, and another part of the reason for spacing out doses, there are a number of things I cannot safely do on narcotics (and yes, may be able to perform better with pain, given that I’m more experienced with the pain) — driving always, sex always, and sometimes cooking, teaching, and sleeping. Third, I am a decided non-fan of some of the side effects of narcotics. It’s counterproductive to feel drowsy or spaced out while, for example, writing a blog post or sitting in a staff meeting. Two pills of Tylenol 3 (or anything stronger) brings me hallucinations along with pain relief. And, um, have you ever tried passing hard, constipated stool through an endometriosis-infused bowel?
   
   Though they certainly have their place in my pain management arsenal, and though I certainly appreciate having them available in any amount, the bottom line is that my pain medication is not about getting high.
6. Don’t assume I’m interested in your endo management suggestions. — I’m assuming most people know by know that I don’t want to hear how your step-cousin’s grandmother’s landlady bested endo by giving up coffee and ingesting only free range, fair trade, certified organic unicorn farts instead. (On second thought, maybe I do want to hear that particular story.) But I also may not want to hear about the new endo medication you’ve read about — that may or may not be so new, that may or may not be so effective, that may or may not have risks or side effects with which I can’t deal. At this stage in the game, the same goes for endometriosis specialists and specialty centers.
   
   It’s not that I never want to hear about these options, but by now, frankly, I’ve done a lot of the research. I’ve checked out the drugs, surgical procedures, and alternative therapies. Even among the brightest and best, a lot of them are not options for me right now — usually due to some combination of location, finances, the particular manifestation of my endo, and my personal priorities. It hurts to get my hopes up at the potential for better treatment only to have them dashed a few minutes later as I realize this newest, bestest thing is neither for me — and that is what happens about 90% of the time. Some days it hurts too much, and I just cannot fucking deal.

It’s not that these ideas are never true — at least, not most of them — but the presence or absence of them on any given day as well as the realities behind them are considerably more complicated than may appear on the surface. If it’s something for which you’d like an answer or a line of conversation you’d like to pursue, please check in with me before barging ahead.

– Me

Admitting

This week’s theme is the social impact that endo has had on my life.

I’ll get to this, I promise.

As some readers might know, I hurt my foot about… a week and a half ago (at least at the time of my writing). I was running, stepped on something funny, my toes were not happy. Now my foot is painful, bruised, and swollen — but healing.

However, my kids have also been working on video research projects, meaning they need space — separate enough so they don’t interfere with one another’s images or sound, open enough that I can keep an eye on all of them at once. Meaning we were on the practice athletic fields, where I could see them all at once but where I had to walk and walk and walk and walk to get from group to group for actual feedback.

On an injured foot. Not my brightest moment.

Our class schedule is set up so that each group filmed twice over the course of three days.

At the beginning of Day 1, I honestly thought it would not be a big deal. “Hey, it’s just walking.” You know, something I routinely do not need to consider as muscular effort or energy expenditure during the course of my day.

Ha.

By the end of Day 2, I was asking my kids to keep to the front half of the practice field (still fine for audio, not so clean for visuals).

“Why?”

Sheepishly, I pointed to my foot. “I can’t actually walk that far all day.” I needed an accommodation.

Here’s the thing. This was pretty much the ideal circumstance to be a person asking for an accommodation. I mean:

1. It was a visible injury. One of the pieces of support tape extended above my shoe. Or, had I taken everything off my foot, there would have been the aforementioned bruising and swelling to show them.
2. It’s a exercise-sustained injury — a pain issue that’s relatively easily understandable as well as one that’s coded relatively positively. I don’t mean that people are all like, “Yay! You hurt your foot!” But I do find that people are more likely to view such an issue as more… noble? forgivable? … than pain from some other causes.
3. It is exceedingly likely to be a temporary issue and one that required only minor accommodation.
4. Let’s face it: I’m an adult teacher in a classroom of secondary students. There’s an inherent power dynamic there that works in my favor.

And yet, despite that not a one of them seemed miffed that I asked them to alter their behavior for me, I felt really awkward and self-conscious in asking this from my students.

Compare that to endo:

1. It’s an invisible condition. From the outside, there’s no proof that it’s happening.
2. It’s often misunderstood. Moreover, endo is part of a broader category — period pain or “wimminz troubles,” depending on how you want to look at it — that are coded more negatively by society. In other words, more people who are likely to dismiss endo as exaggeration or “low pain tolerance,” to judge people with endo as weak, needy, lacking.
3. It is exceedingly likely to be a long term issue and one that may require a variety of accommodations.
4. Most of the people I need to ask are friends and partners — social equals — or employers, supervisors, or health care providers — situations where the power dynamic is skewed against me.

If self shame at feeling physically less than happens in the most innocuous of situations, how much more self shame happens where there’s additional pressure and stigma?

It’s tough admitting that I hurt, that there are things I cannot do — or cannot enjoy — because I hurt, that these limitations are long term and may be permanent. When I do so, I feel vulnerable, deficient. People could choose either not to help me or to demean me while helping me, and I might not be able to do anything about it. I mean, I don’t think my friends would — because there’s a reason I choose to have those people in my lives — but not everyone with whom I must interact socially is a friend.

To admit pain, vulnerability to an unknown entity, an unknown response? That’s scary.

I Hate My Hips

In case you read my blog and are not aware, I have endometriosis. (Yeah, that’s what that MenstroMonster tag is doing in the sidebar.) In case you are also not aware, March is Endometriosis Awareness Month. In light of that, I’m doing this whole Blogging for Endometriosis Awareness** thing. The instructions are thus:

Each week there is a different topic that discusses the various ways endometriosis impacts our lives. We all know that the physical aspects of the disease is just on facet of life and it impacts our lives emotionally, socially, and spiritually.

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The prompt for the week of March 4 is:

Physical impact that endometriosis has had on your life

And, well, yeah. Endo has done what a culture of misogyny, beauty myths, and fat shaming could not. I hate my hips. Which is not even actually one hundred percent true. It’s more like endo has caused unrelenting — but changing and sometimes unpredictable — pain and mobility issues in my hips.

It is nice when I don’t need to be plugged into the wall.

Endo makes it feel like my hips have betrayed me.

Some people have endo that blocks their fallopian tubes and clings to their ovaries. Some have endo that lines their bladders and bowels. Me, I have endo that’s crept into the muscles, connective tissue, and nerves of my hip and pelvic region. To get slightly grotesque about it, endo is eating my hips.

When I talk about endo to people, I find there are a lot of folk who want to categorize it as a condition that consists primarily of “period pain.”

I mean, there are the people — including far too many health care professionals — who want to dismiss it as “just” cramps. To each and every one of them I wish a well-seasoned outhouse, copious amounts of urgent diarrhea, and exactly two squares of TP. One-ply.

There are also somewhat more informed people who understand that endo pain is typically more severe than are standard issue cramps — but who still generally think of it as uterus-centered period pain, only more intense. They don’t account for the potential realities of people with endo to extend beyond periods, beyond pelvises, beyond pain.

I don’t hate my hips because they cause me pain, though I don’t exactly love them for it, either. At this point, pain is familiar, predictable. Not that I don’t cuss out my “sawed in half” feeling from time to time, but I’ve had a lot of years to fine tune a lot of coping mechanisms.

But my hips — home of my “powerhouse” muscles, as so many fitness articles like to remind me — are becoming unstable. I get stiffness and range of motion issues that are roughly cyclical — worse when I’m closer to bleeding, better when I’m further away from it — but that still change wildly from day to day. This means that my baseline for how to perform simple physical movements — standing up, sitting down, walking — isn’t something I can take for granted. More complicated movements — running, negotiating tighter quarters (like a classroom with three dozen desks), practicing pretty much any yoga — require additional amounts of concentration and physical negotiation. In addition to endo in my muscular and connective tissue, the endo along my nerves means that my memory of how to perform these actions may need adjusting not just from day to day but from moment to moment.

The upshot is that I thwap into things with my butt a lot and sometimes stumble for no visible reason because I have trouble determining where my hips are in space. Which, in addition to the bruising, leaves me worrying that people are judging my fat ass.

And also leaves me with questions.

Is this my new normal? Will it get worse? Is there a way to predict how I will feel when? What are my new ways to cope? Why does no one talk about this when talking about endo?

Where are the people who can help?

I guess maybe I don’t hate my hips. I hate that my hips bring up so many unanswered — and maybe unanswerable — questions.

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** I want to acknowledge that the author of that post uses some gendered language to describe people with endometriosis. While endo does disproportionately affect women, it’s important to recognize that not every person who has endometriosis — for example, some trans* men or some folks who are genderqueer — is or IDs as a woman.

Feeling Better?

I went home sick yesterday.

To clarify — I went home in excruciating, menstruation-impending pain.

Due to my school’s block scheduling, it was a day on which my planning period came on the last time block. The pain had been getting worse all day. I was supposed to have a meeting with my team teachers, but other than that, my lessons were planned through this unit. I did not, strictly speaking, have nothing to do, but in the real world of priorities — is was becoming progressively easier to prioritize this pain over the stuff that would not explode if I tried to handle it by email and/or let it sit for one more day.

So I got the formalities in order, let my coworkers know I was not going to be at the meeting due to chronic pain acting up, and went home.

Today — Well, today is my day of the high maintenance classes. I love them dearly, but — no, not but — and that is why I realized that to leave them either on their own for the next step of their project or with a sub-friendly (though less block schedule friendly) activity with a teacher who didn’t know them would interrupt their learning and do a disservice to everyone involved. Plus — not gonna lie — sub plans are more work than is actually being gone.

So I went in.

Two of my three teammates asked upon seeing me, “So I guess you must be feeling better?” Both framed in supposition of an affirmative answer.

Which, no. I’m not. Only I also don’t have the spoons to explain — at least not in the public, time-constrained venue of the hallway during passing period — that how I react to and manage — and yes, plan for — my chronic condition is about a lot more than just “feeling better.”

As an example, this time — I saw and seized a narrow window to carry over one spoon into the next day. Which has far less to do with helping me to feel “better” and far more to do with giving me the reserves to present that “better” face when I’m not.

Pelvic Floor PT: The Office

Continued from here. Disclaimer about how this is not medical advice, nor is it intended to be universally applicable applies.

Q: When I think about physical therapy, I picture an open setting, where multiple people might be sharing the same gym-like or fitness room. That doesn’t happen with pelvic floor physical therapy, right? Like, other patients are not going to see my genitals?

At least where I went, this was not the case. While there were some common spaces — spaces where my PT observed me doing common, okay-for-public movements like walking and sitting in chairs — anything that involved touching (and yes, some things did involve touching; I’ll get to that later) took place in a closed, private room.

Q: So how does the first visit start out, exactly?

At the beginning of the first visit, I completed some patient history forms in the waiting room. It was fairly similar to other patient history forms I’d filled out in other provider offices: allergies, other known health conditions, past injuries and surgeries (types and dates), past pregnancies and childbirths, and known family histories of various health conditions. There was also a section I think was more specific to pelvic issues, asking if I experience — frequently, occasionally, seldom/never — period pain, urinary incontinence or urgency, fecal incontinence or constipation, pain with sex, difficult penetration (e.g., inability to have PIV sex or to use tampons), or other unexplained pelvic pain. I say “I think” because while I’ve seen other providers ask about virtually all of these issues (maybe not fecal incontinence or difficult penetration), I’ve not seen them all together like this.

Then a medical assistant called me back to what looked like a standard office triage area. She took my temperature, blood pressure, and weight. I don’t know why, specifically, they did it, and I didn’t ask at the time. I mean, I assume in general that a lot of offices use the temperature, blood pressure, and weight measurements to establish baselines and to note any marked change from the pattern. However, I’ve also been to some providers where it felt like the rationale for taking such measurements was “we do these things first because we have always done these things first.” I couldn’t say which it was here — though I’d like to believe it was the former — because while they repeated the process for every visit, they never mentioned changes because I had no changes worth mentioning.

After that, she led me into the exam room.

Is Pelvic Floor PT for Me?

And other introductory questions. Continued from here.

Also note for brief mention of sexual assault.

And before I even get started, I want to post an Official Big Ol’ Disclaimer: I am not an expert in pelvic floor or any other kind of physical therapy. I am one lay person, with no medical training beyond first aid courses and a lapsed CPR certification, who has had fewer than a half dozen visits of pelvic floor PT. Additionally, while the reasons I sought therapy and my reactions to it may not be solely limited to me, I do not intend to portray them as universal experiences, either. Basically, I would advise you to read this as precisely what it is: the personal remembrances of a short-term pelvic PT patient.

Anyway.

I’m going to try to hit on some questions that I hope are fairly pertinent — I know they’re ones I had — and answer to the best of my memory and ability. I have a feeling that even from this point forward, this will be a multiple post series, though I have no concrete idea of exactly how many posts it will end up being.

But.

The in-my-head questioning.

Q: I’m not incontinent, I haven’t had a recent baby or hysterectomy, and I don’t have a prolapse or anything. Should I even look into pelvic floor physical therapy? Could it help me?

It depends, of course. But I do know that before I started seriously researching PT — in an, is this worth all of the copays, drives across town, potential dismissals and failures to help, and hours of my life I won’t be able to get back? kind of way — I had certain misconceptions about pelvic floor dysfunction (a sort of catch-all term for when the pelvic floor isn’t functioning happily). Those misconceptions basically amounted to thinking that all pelvic floor dysfunction was hypotonic pelvic floor dysfunction (characterized by muscles with loose tone and insufficient strength). Partly, I’m sure, this is because a lot of pelvic floor talk is in reference to incontinence and vaginas becoming “looser” due to events like pregnancy, childbirth, and aging. In those discussions, the remedy for such problems is always touted as, “Kegels! Kegels! Kegels!”

Newsflash: Kegels are not the magic answer to life, the universe, and everything pelvic.

While I knew my problems weren’t on the hypotonic end of the spectrum, I also wrongly assumed that all hypertonic pelvic floor issues (characterized by tight muscles and inability to relax those muscles) were akin to vaginismus, whose symptoms also didn’t fully fit my experience.

Then I learned that pelvic floor issues are sometimes linked with endometriosis. And sexual assault. And PTSD. So I was like, “Maybe I will check this out.” It was unlikely to worsen my issues, and by this point, I was plenty used to people not being able to help.

Bottom line? There’s a whole heap of symptoms that are associated with pelvic floor issues: incontinence (urinary and anal), prolapse, pain with urination, pain with penetration (sexual or otherwise), constipation — as well as persistent low back, hip, genital, and pelvic pain. I wouldn’t suggest that pelvic floor PT is necessary for dealing with every incidence of them, but for someone who’s had problems finding a workable, lasting solution to such symptoms? I’d think looking into physical therapy couldn’t hurt and might help.

Guest Author: Coming Home

[Notes for discussion of depression, suicidal thoughts, and weight gain.]

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My name’s Zannah, and I’m extremely well-rounded. (Hee!) I studied general science in college, specializing in biology, and my pet areas of interest are skepticism, health, fighting oppression (with mah CAPE!) and sex-positivity. I am particularly engaged with people who have been sexually assaulted or victims of domestic violence, and I identify as a feminist no matter what bugaboos people pull out to scare me with. In fact, I am fearless.

I am only fearless, because, as you may know, pain is fear leaving the body and I have known pain well and thoroughly. It is an old and dear opponent. I was diagnosed with fibromyalgia and endometriosis in 2007, after suffering undiagnosed(and unbelieved) for a year. I have chronic severe life-long depression and ADD. (I’m kind of fond of the ADD, actually.) I have a rare brain disease that causes bullshit headaches, plus other fun manifestations. This life, particularly this last year, has been enormously difficult.

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Today I did my first yoga practice in at least three years. I also ran, which I had not been putting off quite so long; only two years or so. I made it ten minutes running, which blew my mind. The yoga sequence was possibly the simplest practice I have ever done: knees to chest, cat-cow, child’s pose, seated wide angle pose, corpse pose. It was incredibly emotional. During child’s pose, I could only take long, shuddering breaths, as though I were sobbing, and tell myself that where I was was good.

To understand this, though, you must know that both yoga and running have been very
important to me and huge markers of my well-being. In the last few years, my world has come crashing down and today I may well be at the lowest point in my life so far. Well, maybe yesterday was the lowest point.

I began my yoga-and-running (Roga? Yunning?) when I was 22, when I simultaneously began having symptoms of endometriosis and fibromyalgia, both of which are marked with chronic pain. I discovered a perverse side I didn’t know existed in me, which said, “I’m going to be in pain no matter what I do? Well, fuck it. I might as well be running.” I signed up for a 10K and trained, and although I wasn’t fast, I won- I finished! I also found that I get the runner’s high pretty easily, which is so delightful; it’s like bouncing along on the moon!

I quickly discovered that the doctors were not much help for the fibromyalgia, so I explored other therapies, including yoga. I don’t know if the yoga helped the fibromyalgia, but I found it profoundly enjoyable and mind-clearing. I developed a fairly serious practice, exploring new poses and trying different varieties of yoga within my limited means. I enjoyed the physicality of it, the peace it gave me, and the challenge of designing new practices.

Through all of this, I struggled with chronic depression. I have never not known depression- I was diagnosed when I was nine. I have had my ups and downs, but even when my runs and my practices weren’t mindbogglingly amazing, they left me satisfied in a way that I didn’t get from anything else. Although I had shied away from activities like these before due to my weight- I have consistently been about 230 lb on a 5’8”, medium frame- I found it to be no barrier. These opened doors for me, doors I had not even seen before.

In 2009, I married. I can’t say what it was- I remember doing yoga while my husband sat on the bed and read the next pose out to me- but something twisted in me, and somehow the things I had enjoyed became stressful. I couldn’t find that peace and that physical satisfaction in yoga any more. It was just painful. I couldn’t muster the energy to go running. There was nothing there for me. The marriage had its problems, and ended in 2011.

Since I left my husband, I have known deep grief and severe depression. I have struggled with suicidal thoughts, over and over until it becomes ridiculous- and terrifying. It’s a matter of pride for me that I have not harmed myself or attempted suicide, although it did take a few stays in the hospital. I’m deeply grateful for my friends and my family, who have been amazing. Still, when I look into my future it’s hazy. Due to medication and depression I’ve gained 80 pounds, which has precipitated bullshit rare health problems. (And also, I have no clothes to wear!) I have wondered if I’ll ever have
my life back- ever be able to move and enjoy things, ever have energy, ever be reliable and not prone to bursting into tears.

So again I say: Today, I did my first yoga practice in a long time. I also did my first run in a long time. They were challenging, but I met that challenge and it was again deeply satisfying. I feel new hope now; not overall, not that my life is magically better. But it’s not a small hope either. Just knowing that I can do this once more eases a huge concern about my abilities and my connection with my body. I’m not the woman I once was. But that’s okay. I’m here now, and as Thich Nhat Hanh says, “Present moment; Wonderful moment.”

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If you’d like to read more of Zannah’s work, you can do so at In the Pink of Nourishment or via Zannah’s Facebook page.

If you’d like to contribute a guest post at Anytime Yoga, you can email anytimeyoga@gmail.com.

Pelvic Floor PT & Me

Once upon a time, I had health insurance that actually, like, covered things. After attending a yoga-related workshop on the pelvic floor, I learned there was such a thing as pelvic floor physical therapy that could sometimes help with chronic pelvic pain of various origins. I also learned that there was then a pelvic floor physical therapist relatively local to me. I wasn’t really sure if it could help with endometriosis, but I decided mentioning it couldn’t hurt — and so brought it to the attention of both my primary care provider and my gynecologist.

They agreed. Particularly, I think, as an alternative to prescribing pain medication and as a way to foist me and my chronic problems off on someone else. (Note: These are not my current providers. When I finally got someone to listen to my dysmenorrhea complaints, my former GP referred me to his golf buddy, the gynecologist. The gynecologist performed a lap, found endo he couldn’t remove, declared “everything okay for now” since there was no visible obstruction to my fertility, and was perturbed when I continued to complain about pain. So, yeah. Exes.)

Anyway, while only a couple of people have asked me in real life — and maybe 10 or so people have on the Internet — I get a fair amount of blog traffic from search engine queries related to the pelvic floor and to pelvic floor dysfunction. This makes me wonder: 1) if this is a topic that interests some people but that people might be hesitant to ask about directly; 2) if there is a lack of satisfying resources available about pelvic floor dysfunction.

So, in the interest of providing more pelvic floor sharing, I’m going to write about my experience with pelvic floor physical therapy. It was a few years ago; I went for a total of 5 visits, and then my physical therapist moved out of town. I debated trying to adjust to a new person, and in doing so discovered that my insurance only wants to pay for a total of 6 visits for a single issue ever. Sort of like if my pelvic floor had been injured in a fall, rather than having been fucked up by years of multiple chronic issues. There were insurance appeals; they were denied; I didn’t go back.

Which is a shame. I don’t know for sure that additional sessions of PT would have produced continual improvement for me — there’s always the possibility that it had already done what it could do — but that should have been a decision between my health care professionals and me, not one dictated by my insurance company.

Okay, and I will write more about the actual details of my experience. But that is going to get long, and this seems as good a place as any for stopping the intro.

Done with Abduction, on to Adduction

Last time I did an anatomy post, it was to check out the hip abductors, the muscles on the outside of the hip, whose job it is to pull the hip and thigh outward away from the midline of the body — a la warrior two or any of the straddle poses. Now it’s time to look at the hip adductors, the complementary muscles on the inside of the thigh, whose job it is to pull the hip and thigh across the midline of the body — think crossing your left leg over your right, for example.

As I was doing my initial research, I discovered that there seems to be some discrepancy about which muscles, precisely, the hip adductors are. That is, some sources list as few as three muscles in the group while others include as many as seven. Essentially, some of the muscles play a large role in hip adduction and/or have adduction as their primary function whereas other muscles play a smaller role in the movement and/or have adduction as a secondary (or even tertiary) function. The way I’m looking at it, this means a couple of things:

1. Most poses that involve hip adduction are going to mainly impact the three major/most common hip adductors.
2. Some of the muscles that perform actions besides hip adduction may be addressed in other segments of the hip series.

Also, I am a little bit lazy. For those reasons, I’m going to focus on the adductor brevis, adductor longus, and adductor magus here.

As you can hopefully decipher from this diagram, those three muscles are sort of layered along the inner thigh of each leg:

“Anterior Hip Muscles 2″ by Beth ohara. Own work. Uploaded to Wikimedia Commons on 31 January 2006. Shared via Creative Commons 3.0 License.

The adductor brevis is, as its name implies, the shortest of the three main abductor muscles. It starts on the pubic bone and extends to the upper portion of the femur. Immediately below that is the adductor longus, which originates on the pubic bone and extends to the middle third of the femur.

Both the adductor brevis and the adductor longus are relatively superficial muscle layers. Beneath them lies the adductor magnus, which actually has two portions: an adductor portion and a hamstring portion. It also starts on the pubis — a little farther out to the side than either brevis or longus — and attaches all along the thigh bone (as opposed to the others, which have much narrower attachment points).

Tight adductor muscles can cause groin pulls, which are, of course, the injury no one wants to explain. And weak adductor muscles can cause imbalance in the hips and pelvis — meaning that muscles like the tensor fasciae latae and the gluteal group can have too much pull, causing the pelvis and the low back to pull out of alignment.

Of course, a lot of the asanas that stretch the adductors strengthen the abductors, and so we’ve covered them. Similarly, a lot of the poses that strengthen the adductors stretch the abductors, and so we’ve covered those too. I promise I’ll try to get creative with this leg of the serieS!

Why Are You Taking That?

It’s pretty well known around these parts that I have endometriosis. Similarly, that the actual line-up of endometrial lesions in my body is a relatively atypical one. That is, a lot of endo tends to be centered on the outside of the uterus, ovaries, and fallopian tubes; I have precious little of it there, but I do have lots of microscopic lesions throughout my pelvic cavity tissues (muscle, connective tissue, and nerves).

Even given that, I’m on a very typical regimen for symptom control: oral contraceptive pills, a daily or near-daily dose of over-the-counter NSAIDs (in my case, naproxen sodium), and the occasional milder opiate-acetaminophen prescription pain reliever. It gets a lot of people, from all over the endometriosis knowledge spectrum, asking me, “Why are you taking that?”

There are laypeople who wonder why I’m on birth control when I’m already sterile. There are GPs and OB-GYNs with limited endo dealings who wonder why I’m not using Depo Provera, Implanon, or Mirena instead. (Hint: Because while they often do stop bleeding eventually, my hemoglobin levels cannot — as in my experience with Depo — sustain the 12 weeks of heavy, daily bleeding I got as “adjustment.” For Mirena, I fully believe that IUDs are often great things when they don’t fall out of my crotch.) Additionally, there have been at least a few endo specialists who don’t understand why Lupron Depot plus add-back therapy or radical hysterectomy plus add-back therapy don’t sound like completely marvelous ideas — since I’m not planning on kids anyway, you know.

There have been people who worry about my increased risk for heart attack and stomach bleeding while taking NSAIDs, just as there have been people who’ve wondered — if my pain is really this bad — why I’m not taking a prescription strength dose. (For the record, I am on days that I need to, but purchasing the OTC version: a) is cheaper; b) lets me take less on days when I need less.) Similarly, there have been people who worry about my impending opiate addiction while others have commented that I should — again, if my pain is actually that bad — be taking a stronger opiate or opioid instead.

I’m not going to say that all of my advice givers (solicited or not) are not knowledgeable about endometriosis — because that is certainly not true — but none of them are experts in what it is like to be me.

The latest round of, “Why are you on that?” started when I switched birth control pills a few months ago. I switched initially for financial reasons. Now, aside from mild breast intermittent breast tenderness (that does not correlate with where I am on any given pill pack), I have no noticeable side effects to speak of; this in itself is a first. Add to this the fact that it manages my bleeding levels — and consequently, my pelvic pain — better than any other hormonal option I’ve tried, and as far as I’m concerned, we have ourselves a winner right here.

I had mentioned this to a couple of people in person and online in the context of, “This is what I have been using and how it has worked for me; your mileage may vary,” which is my standard disclaimer when discussing any and all brands of hormonal contraception.

The response?

But that pill is dangerous! It’s the one with all the lawsuits!

Which, as far as the lawsuits go, that much is true. There are lawsuits for this pill I’m on now. There were lawsuits for the last one. There were lawsuits for about four or so oral contraceptives and/or pain medications I’ve used before that. While some medication lawsuits are well founded, we are, on the whole, a litigious society — and just because someone sues doesn’t mean there is merit in the suit.

But this one raises your risk of blood clots and stroke! It’s bad!

Again, yes and no. Yes, some studies indicated that this particular pill raises my risk of blood clots above the level associated with the levonorgestrel-containing combined pills. Let’s assume these results are correct; I certainly did when weighing my choice to try this pill. That said, there are other brands — other progestins and other delivery methods — that raise similar concerns; my new pill is actually not unique in this respect. In all cases, the relative risk when using these methods remains lower than the risk of blood clots during pregnancy and immediately postpartum.

There’s also the fact that these risks — even though blood clots are a serious issue — don’t exist in a vacuum. For instance, if I’m considering them happening to me, I have to consider that I have virtually no significant factors that place me at increased risk. I also need to weigh the potential of a blood clot against the reality of plummeting iron and increasing pain (and therefore increasing need for those above mentioned pain medications, each with physical and psychological risks of their own). Even when the tradeoffs don’t necessarily merit an ER-worth risk, quality of life still has value — and I’m the one entitled to assign that value to my quality of life.

The truth is, my current regimen (medication plus other lifestyle choices) is not spectacular at managing my symptoms. If I suddenly found myself with a fairy godmother and a magic wand, we would definitely be having a conversation about a workable endo cure. But that doesn’t exist for me right now within widely available medical (and lifestyle) options. And the options I’m using right now are the ones that provide the best balance of pain/bleeding control against unmanageable side effects (e.g., the vivid and sometimes frightening hallucinations I get while on synthetic opioid medications). In other words, I’m taking “that” pill or “those” meds because they are the ones that best help me to live my life — with my priorities, as I decide.

Pacing

There’s a load of laundry in the dryer; I should take it out and fold it.

There are two more loads waiting to take its place; I should put at least one of them in.

In reality, I will pull out exactly one pair of clean underwear tonight — to wear for tomorrow. The actual folding of this load will happen tomorrow, and the rest of the washing I’ll save for a different day.

Sort of like, there’s a lesson plan I should be writing. It’s not urgent urgent — and it is planned in my head — but on paper (or on computer), I’m not as fully prepped as I’d like to be.

I should be doing it now, but in reality, I’m toying with the idea of writing it during my Wednesday morning staff meeting (where it still won’t be urgent urgent, but it will be getting there).

Also, this blog. I like to keep a certain amount of items in the queue, in case my Internet goes out or my computer explodes or I end up trucking some friend or creature (or me) to its respective emergency services provider. It’s been known to happen. Or just to keep from feeling like ZOMG! I have to write something NOW! or else there won’t be anything up for tomorrow. Exclamation point! I do not write well under pressure.

And yes, my queue right now is a little lower than I’d like. As with the lesson planning, it’s not urgent urgent — though apparently, I’ve decided it is more pressing than said lesson planning** — but I want to get writing a bit.

In reality, though, I will probably write this one real entry, maybe write one quick fluff pose (maybe not even), and call it good for a day or so. Almost certainly until after the lesson planning. Whether it trumps the laundry is anyone’s guess. (I have enough underwear to make it through the week, but some of my favorite Vibrams are getting pretty stinky.)

Today in my yoga practice, I still had enough energy to take every vinyasa I wanted to. But I made myself skip half of them so I’d be able to make it through my week.

I’m pacing myself, rationing my reserves.

You see, I started breakthrough bleeding today. (Hey, I can’t complain. I made it through 22 active pills, which is a near record.) On a Monday. (Did I mention that I queue posts, and so the day I’m writing is usually not the same as the day of publication?) Day before yesterday, the cramps started ramping up, and though part of me remained hopeful it was just a phase, a larger, wiser part knew what was happening. A period — technically, withdrawal bleed — is inevitable.

During a work week.

Due to a variety of factors — losing past instructional time, current major project, impending end of marking period, and of course, the fact that prepping for a sub is actually more work than is being there — taking a sick day is a last resort. No, really. An absolute last resort: I do not have the energy to plan to be gone.

And so, pacing myself. Holding back on the things I’d like to do today — when the pain is still pretty tolerable — so I will have something left for the things I’ll need to do when the pain is considerably worse.

Hi, endo — this is what I mean when I say that I plan my life around you.

** A note to non-teachers: Teachers procrastinate their lesson planning like students procrastinate their homework. About the only thing we’re worse about is our grading — which I am ironically all caught up on at the moment.

Just Fire Your Doctor

Ah, Internet reading, the posts you inspire. Also, ah, Internet reading, how common threads turn up in different places. In this case, the common thread — from size acceptance advocates, from chronic pain patients, from frequenters of sexual health haunts — is the advice to “just fire your doctor” if they aren’t meeting your health care expectations.

First off, I absolutely agree with the sentiment behind the advice. When I enter into a provider-patient relationship with a physician or nurse practitioner or midwife, I am seeking professional, expert health care advice and services, yes, services I usually cannot provide for myself. However, guess who has the best overall knowledge of me? That would be… me. As such, given that I am seeking advice and services about health care applied to me, I bring some expertise to the table too. I respect my providers’ knowledge. Any providers who refuse to respect my knowledge about my own self — my history, my body, my priorities — are not good providers for me. I should be able to “fire” each and every one of them and to seek services elsewhere.

Except, it isn’t always that easy.

For people without insurance and/or with limited incomes, health care in the US (and in other places, I’m assuming, but this is my frame of reference) is expensive, sometimes prohibitively so. While I’ve been fortunate to have medical insurance for most of my life, there have definitely been times when I could not have afforded a second visit to another provider — at least not inside any kind of short time frame, should appointments even be available.

Even with affordable insurance, there are sometimes limits to how many different providers one can see. For example, I am currently permitted to change my primary care provider one time per plan year. Any time I want to see a specialist, I need a referral from said primary. (Which can be an issue if, say, my primary care provider disagree on what is wrong with me and whether consulting a specialist is necessary. Then it takes one extra doctor — and one extra copay — to get to the doctor I wanted to see in the first place.)

In cases like those, my realistic choice was between settling for sub par treatment and settling for no treatment. In cases like those, I have, at times, been willing to tolerate unprofessional treatment — judgment about my weight, mental health, or sexual history — in order to obtain the services I need in the shorter term. It’s not pretty, but there you have it.

Additionally, some health care issues are urgent. When I am, say, gushing pints of blood out my vagina, “firing” the ER doctor is not the most accessible option.

Then there are mobility and availability issues to consider. Some people live in rural areas, where the “next doctor over” is ten or twenty or fifty or a hundred miles. For people without independent transportation, there’s a limit to how far they can reasonably travel — round trip — in a day. Hell, for people with reliable cars, there’s a limit to how far they can drive — taking off work, if they can, perhaps unpaid — to see a second health care provider. For people with chronic pain or bodily mobility issues, those can be limiting factors as well.

When all’s said and done, some of us just plain run out of health care providers. I mean, I have health insurance, and for regular office visits — urgent care, advanced imaging, and surgical care notwithstanding — I can basically afford my copays as often as I go now (somewhere between two and four times per year for non-acute care). I live in a good-sized city, though it’s not a major metropolitan area, and it is in a Western state — meaning that distance between cities and to the nearest major metro area is rather enormous compared to my experience with states east of the Mississippi.

But I also have endometriosis. Specifically, I have microscopic endo with chronic pelvic floor involvement. In lay terms, I have an odd presentation of endo sufficient that it confuses — explicitly or in practice — all the endo specialists in my good-sized city. (I say “or in practice” because there was one doctor who was sure he had my magic solution — but who couldn’t figure out why I wanted more endo management than, “Congratulations, your fertility should be perfectly intact. You’re one of the lucky ones.”) There was one awesome pelvic floor physical therapist, but getting my insurance to cover enough visits (apparently they do not understand that some folks may require physical therapy for chronic conditions as well as acute ones) was an endless barrage of paperwork red tape and phone call runarounds. And anyway, she moved away.

I’m very loyal to my current nurse practitioner, but objectively, there are a lot of reasons why she’s not the best for me. She’s not an endo expert, and she’ll be the first to admit that she’s old — more to the point, that no matter how hard she tries to keep up with the various new developments of her patients’ health care needs, things often change faster than she can process, let alone memorize. Even more to the point, she prescribes too few pain meds and won’t refer me either of the two pain management clinics here in town. (According to her, one is unlikely to prescribe any opiates without an opiate contract. The other is likely to be freer with the prescription pad but unwilling to pursue other avenues of pain management. My independent research, though limited, suggests that her assessments are — more likely than not — accurate.) Additionally, while she does not berate me for my weight, her office requires that she discuss it with me at my physical every year.

Could I “fire” my nurse practitioner? Certainly — though if I do so, I’m stuck with whichever new provider I choose until August 2013.

Should I “fire” her, though? In the abstract, I really couldn’t say. I mean, if someone came to me, cited my NP’s same shortcomings in their own health care provider, and said they were dissatisfied with the quality of their health care, I could neither disagree nor fault them for their assessment of the situation. Even for myself, whatever else I could or might say in my NP’s defense, I continue to have health issues that are insufficiently managed.

Am I going to do it? No, flat out. It is true, technically, that I could find another health care provider who helps me better than she does — and that I could do it on the very next try. That said, my “on the ground” experience here suggests that I’m actually four to five times more likely to find someone who does a worse job of things. And, given the various real life limitations going on, four to five years is a long time to wait to make “firing” my provider actually pay off.

A Small Endometriosis Rant

Partly on the endo classification system itself, partly on how people tend to interpret it.

Short text explanation of how endo classification works — Upon observation (usually via laparoscopy), the surgeon makes note of the size and location of any endometriosis lesions they find. Each one gets a certain number of “points,” depending on size and location. (It’s like a game, whee!)

Interpretation mistake number one — Equating Stage IV (severe) endometriosis to more pain and Stages I and II (minimal and mild) to less pain. As many other sources will explain, there is no particular correlation between endo stage and pain. It is quite possible to have Stage III or IV endo and have minimal or no pain or to have Stage I or II endo and have frequent or severe pain.

Interpretation mistake number two — Failing to recognize the strong reproductive bias in the staging system. For endometrial lesions of comparable size, lesions rate anywhere from twice as many to four times as many “points” if they’re on the ovaries as opposed to the peritoneum (pelvic cavity). As for adhesions, the only ones that rate points are those that involve the ovaries or fallopian tubes.

For instance, I have dozens — if not hundreds — of small endometrial implants in my peritoneum, at least some of which (the ones biopsied) are deep. Two points.

There is some posterior cul de sac (basically, the way back of the vagina) endo going on, but not enough for my surgeon to deem it even partially obliterated. Zero points. (Though the gynecologist I saw after I left that surgeon wondered if he hadn’t miscategorized it — so maybe four points?)

And there are also multiple pelvic cavity adhesions — at least some of which, as evidenced by biopsy, have endo involvement. Zero points.

So there’s basically a situation where endometriosis is running deep and wide throughout my pelvis but where the classification system labels it as “minimal” or “mild.” Not only is that a piss poor way of categorizing pain (which, fortunately, most people who are familiar with endo understand), but it’s also a woefully inaccurate way even of classifying the physical impact — the physical presence — of endo on my insides (which, unfortunately, even a lot of people who are familiar with endo do not understand).

Yoga Month, Yoga Wisdom — Pain

The first thing yoga taught me was that not all pain is good pain.

The second thing yoga taught me is that not all pain is bad pain.

Particularly for someone who’s recently come to realization of the first, I think the second can be a good balancing reminder.

What I mean is this:

There was a time when I was effectively in denial about the harm “bad pain” was doing to my body. By “bad pain,” I mean things like joint pain or pulled muscles from forcing myself too far in a posture or like powering my way through a bad endometriosis day, only to use up all of my stamina reserves in my workout.

Then there was a time when I realized that “bad pain” was, well, bad and therefore important to avoid. Only, because I did not have a way to distinguish good pain from bad pain, I wanted to avoid all pain. Understandable, but not necessarily either reasonable or productive.

For a while there was a time when I wanted to avoid even strong muscle-building pain, the kind one might experience in one’s quads or glutes from holding a warrior or a goddess pose for a long time. Within reason, that type of pain can be non-harmful and can even be helpful. But only if I’m okay with experiencing it long enough for it to actually start to build the muscle or to find stability in a pose or whatever.

Even now, there are some types of opening sensations that I shy away from — specifically, in my shoulders and in my hips. My shoulders are pretty tight, so a little opening is a lot intense for me. And hip openers are just… hip openers. Particularly as a survivor with chronic pelvic pain, that is a lot of physical sensation for me. Even when the physical sensation I’m experiencing is not inherently negative, it can remind me of similar hip or pelvic or low back pain I’ve felt that was bad.

But a lot of that muscle building and muscle releasing pain can be beneficial. It’s a matter of paying attention and not asking myself to deal with more than I can handle.

Can’t Have Everything

I’ve been thinking I’ve been angry at the Internet a lot in the past few days. I mean, there’s the standard “inadvertently glancing at comments on a mainstream media news post” and “dealing with hateful troll comments” types of angry. On their own, I can brush them off pretty easily, but piled on top of others, they’re still part of the baseline. Then there are the hit-or-miss blogs I read occasionally; in the past few days, they’ve been more miss than hit.

But I’ve been most angered by comments in places I’d previously regarded as safe spaces for particular types of conversations and issues.

As it happens, I am wrong — both about those being safe spaces and about me being angry.

Really, I realized during an hour of stepping the fuck away and reminding myself of what yoga feels like, I am hurt.

Previously, I’d considered these spaces to be ones where I could let my guard down regarding things like fat, disability, and body image. For a considerable length of time, especially in Internet terms, that worked well for me. Now, though, it seems that some of those spaces have become more focused on being more educational, discussion-oriented spaces for a wider variety of readers and commenters.

Don’t get me wrong. I’m not saying that these are now bad spaces or that we don’t need spaces that focus on 101-type social justice education. However, I think it’s not always possible to be a space that’s both open to folks who’d like that 101-type explanation to their questions or reservations and that’s supportive of folks who are literally frustrated to screams and tears by the repetitive and potentially insensitive nature of those questions. Can’t always have it both ways.

Which is why I can no longer visit those spaces in the same way — because they are no longer safe spaces for me. In short, when people ask clueless questions or make misinformed comments — even when they do so innocently, respectfully — it hurts unless I put up conscious emotional defenses against it (sometimes even then). Those defenses are stressful, anxiety-inducing. I need places to go where I can be without them sometimes.

Maybe sometimes, I will still visit when I have sufficient psychological reserves. But they can’t be the places I go after a long day at work and in the world, where I’ve been busy being strong for everyone else. They can’t be the notifications the pop up in inboxes and dashboards the ones I might open for sake of the title when I’m really not prepared for what’s inside.

They now join the long list of places I can read when I’m ready to give back even more. The list of spaces I can go to find peace and to restore? That one continues to shorten.

Obamacare, Birth Control, & Me

Today is the day. As part of the Affordable Care Act, insurers will have to cover some preventative services — birth control pills among them — without copays or cost-sharing, in the first plan year that begins on or after today’s date.

Okay, so my plan rolls over in September. Technically, the first of next month is the day for me. But today is the day I am going to start thinking about it.

Because this pill, I’m not so sure it’s working out for me. I woke up in too much pain to get out of bed on the first try. And between the desert summer, my sweat, and the amount of fluid coming out of my vagina, I’m finding it awfully hard to stay adequately hydrated. Not to mention that what I’d really, really like is to be able to stack pills and — as long as I’m spewing out fantasies here — suppress pain and bleeding completely. (I would say “at least down to normal levels,” but at this point, I believe I have already had enough extra pain and blood to feel like I deserve to be done now.)

Cost-wise, I’m pretty lucky already. I have health insurance, for one. For two, I’m on a pill that my insurance plan considers Tier 1, which makes the copay pretty affordable. But that’s balanced against, you know, the fact that these pills aren’t really doing their job so well. But that’s more a “medical science has shit-all to treat my endo” issue, not so much a health care affordability issue.

Which is why I feel a bit guilty for hoping what I’m hoping and considering what I’m considering.

There are some pills that my insurance will never classify as Tier 1 because they cost approximately eleventy billion dollars per pack. They are, however, of such a variety as to lend themselves toward stacking. In the past, I’ve been afraid to try them for two reasons: fear they might not work and fear they would. If they didn’t work, that meant I would have spent a ridiculous amount of money to trade a known set of symptoms and side effects for another set that was equally craptastic — or perhaps even more so. (Not to mention, the joy of adjustment side effects.) If they did work, that meant I’d either resolve to try to go on them permanently — which, in reality, would likely mean I delayed refills some months due to lack of sufficient monies — or know that there was something out there that did work but that I couldn’t afford it reliably.

Except now — well, in September — I would be able to afford it. Which doesn’t mean it will work and still leaves the question of whether the hormonal side effects are worth switching (could get better, could get worse). However, financially, I could afford to risk it — and if it worked out, I could afford to continue taking a medication that actually helped me. That’s no small thing.

And I understand, yes, that this is not what this provision of the Affordable Care Act was designed to do. Access to affordable contraception is not the same thing as me wanting to try some brand name pills on the chance that they’ll help my endometriosis symptoms. For folks using hormonal contraceptives for, you know, contraception, not being at risk for unplanned pregnancy due to lack of finances is a big fucking deal.

And yet, this is also true for pain management. Starting September 1, I may no longer have to tell my doctor, “If it’s not generic, don’t even bother.” Being able to choose a medication based solely on how well it works (or might work), rather than how much it costs, is a big fucking deal.

Athletes, Pain, & Stating the Obvious

So I’m reading For Athletes, Dealing With Pain May Be A Big Gain on NPR. One sentence summary: Athletes, particularly endurance athletes, tend to have higher pain tolerances than do non-athletes.

As an athlete, this makes me happy. As someone with chronic pain, this is fucking depressing.

It makes me happy to know that I’m already doing this thing that can help me cope with chronic pain. It’s also depressing because it means — this suggestion, this new thing? It is not new to me. It is something I’m already doing. It’s already helping, and the pain is at this level.

Additionally, the article racks up the non-awesome points for including the line, “the German researchers think that exercise could help people with chronic pain learn how to better deal with it.”

Really? People with chronic pain might be told, “Have you tried exercising?” This will certainly be a revolutionary insight into managing chronic pain everywhere. Because no one with chronic pain already exercises, and even fewer people have had it suggested to and/or pushed on them.

I also worry that it’s way easy to spin this into one more thing that people with chronic pain must do “right” in order to have their pain taken seriously. In pain? Just exercise! Still in pain? You’re just not exercising enough. Given that I’ve heard every bit of that line before — both for pain and for weight loss — it does not require a great mental leap on my part to envision it extending outward to more people.

I am all for finding more and better ways to manage chronic pain. But I am also worried that a lot of gatekeepers will want to use this as a new way of saying “toughen up” — as an excuse not to treat — since there’s a problem with that happening already.

That said, the next time anyone asks me what I do to manage my endo pain, I am going to respond, “Handstands.”

Scared to Ask

This post is part of Blogging Against Disablism Day:

It started when they moved the faculty lounge to the second floor. The faculty lounge is important for two reasons. Not because anyone lounges there but because our mailboxes, which we are required to check daily, live there. Also, they contain the only bathrooms on campus furnished with the luxury of a spare roll of toilet paper in case the first runs out. When there are only five minutes between classes, I don’t exactly have time to drip dry.

Unfortunately, when there are only five minutes between classes, peeing in the faculty bathroom is nothing but a far-off dream. More to the point, though, on a bad pain day, I can’t really get up the stairs in any meaningful time frame. Additionally, with a bleeding disorder, sometimes getting to the bathroom, any bathroom, launches itself from convenience to immediate necessity. In short, moving the faculty lounge upstairs meant I could no longer handle some facets of my job — checking my mailbox daily, inability to go 3.5 hours between bathroom visits — without accommodation.

And I was scared to ask.

First, in terms of claiming I can’t always do stairs, I fit the standard definition of “but you don’t look sick.” That is, I appear mobile on stationary, level surfaces. In fact, sometimes, I even enjoy — and talk about — being pretty active and athletic on those types of surfaces. (Trufax: On bad pain days, hill running is optional. Changing my cup at work, not so much.) Second, part of my need for accommodation has to do with “wimmin’s things” and also blood. There are all kinds of reasons a supervisor at work could react to my concerns as if they’re fabricated, exaggerated, silly, or plain gross. I was worried about those not only as personal reactions from people, but also as reactions that could result in ungood professional consequences for me.

I’m good at my job. How fast I can climb stairs or how often I end up filling my menstrual cup is unrelated to what makes me a good teacher.

Fortunately, when I asked, the people who responded were understanding, professional, and responsive. I received both key access to the building’s elevator as well as an arranged system with my neighboring teacher, who also happened to be my department chair for how to handle emergency gushing sessions. Dealing with my endo continued to be supremely unfun, but at least I wasn’t worried about work logistics complicating the issue.

But. Time passed. Employee assignments shuffled. I’m in a different department. Both the department chair and the assistant principal I’d originally come to with my concerns have moved on to positions at different schools. (Relatively up the employment ladder for both of them, perhaps as a result of them also being damn good at their own jobs.) The people who had been looking out for me — in fact, the only people who had known about my endo — are gone.

And now I’m moving too. Same school, but a different program and different building. I don’t know where my room will be next year, or what it will mean in relation to my mobility and blood-gushing needs. Part of me thinks I should speak up. My current supervisor is, by my own experience, as fair and understanding as the one who came before. If everyone is open and reasonable, odds are pretty strong that we could come up with a new set of workable accommodations.

Once again, though, I am scared to ask. For all of the same reasons — fear I will be ignored, fear I will be belittled. And most of all, fear that people will think I am somehow incompetent or unable — and a lot of times, people conflate the two — at my job. Regardless of what should happen, what does happen is that I worry that people will confuse “I need help with the logistics” — which are, after all, really arbitrary here — with me being a fundamentally inadequate teacher.

It is, perhaps, ableism at its most efficient. I’ve internalized the anticipated negative responses so well that no one even has to tell me “no.” I’m scared to ask… and so I don’t.

5 Challenges & 5 Small Victories

I didn’t really write yesterday, but I think I can handle today’s blog prompt. It involves numbered lists, after all — and I love numbered lists.

5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges:

1. Increasing Pain — Not necessarily in intensity but in frequency and duration. Several years ago, I estimated feeling pain for about two weeks out of every month. That gradually increased to two and a half, then three, weeks. Then “most days.” Now I can’t honestly say that I experience days without endo pain. There are low pain days and bad pain days — and in-between pain days — but saying goodbye to the reality of pain-free days has been rough.
2. Decreasing Mobility & Stability — My hips and back are stiffer more often, for no apparent reason. Not like, I worked them hard the day before or I slept on them funny. And unlike stiffness from those types of causes, I don’t work out of it from everyday movement. It’s also more often that I can feel one of my pelvic or hip nerves cut out from under me for no particular reason. Just working and then — whoops! — not.
3. Giving Up on Menstrual Suppression — For a long time, one of the goals of my endo management has been to try to suppress my menstrual cycles, which has resulted in multiple methods of fail. I bleed all the time. I bleed all the time with bonus side effects. I bleed more normally, but the thing that regulates my bleeding falls out of me. I bleed sufficiently erratically that I have no idea that what I’m actually experiencing is a chemical pregnancy and miscarriage. (This, by the way, is not recent.) There was always the implicit promise that if I could eliminate the period-like bleeding, then I could also eliminate the pain. Well, I can’t and I can’t. My current best hope, it seems, is to wrangle the bleeding — and therefore the worst pain days — into a generally predictable schedule.
4. Invisibility — This encompasses two areas that sometimes conflict. One is my frustration that since I usually don’t appear to have any kind of impairment, then people — coworkers, people in the general public, sometimes friends — expect me to perform as if I’m healthy and able-bodied. Or that they expect me to prioritize my energy expenditures according to what makes sense to them (e.g., going out in an evening versus going for a run). The second is my discomfort with admitting — in person, to people outside my intimate circle — that this is not the case, as well as negotiating what that entails in concrete terms.
5. Trying to live up to everyone else’s expectations and blaming myself when I can’t.

5 Small Victories:

1. My Primary Health Care Provider — Who is unequivocally on my side. As such, she addresses what concerns she can and tries to refer to specialists when she can’t. (Though admittedly, the specialist referrals have been a bit of a crapshoot.)
2. Yoga — Sometimes people ask why, if I’m dealing with a chronic pain condition, I gravitate toward such a vigorous practice. The answer is that putting my body into a variety of postures that each demand strength, balance, and control, I am helping my “trunk muscles” (core, hips, thighs) compensate for the decreasing mobility and stability.
3. Tax Refunds & Flights — Recently, I received my tax refund from the government and used it to purchase a plane ticket to see my mom and sister this summer. Between the quantity of the refund (I know, I know — it means I’ve been letting the government take too much money all year, but whatever), scouring the Internet for the best rates, and admitting to myself that I Need This, I was able to get seats with extra room on four shorter flights (2.5 hours + 2.5 hours each way; as opposed to 0.5 hours + 4.5 hours each way) rather than risk the Dreaded Middle Seat on the standard flights from the major carriers at my local airport.
4. Carpooling — Even when I end up taking the bus home, somtimes it is the world’s biggest relief to know that I do not have to drive — and therefore potentially risk my own and everyone else’s safety — while in pain. (Or while on narcotic pain relievers, which is legally a bigger conflict.)
5. I want to say my current hormonal birth control pills — but that remains to be seen. There is a reasonable chance, though, that they will accomplish the predictability task set out for them.