How I Got To Pelvic Floor Physical Therapy For Endo

I have endometriosis, and there’s a lot I want to say about that. To start, I want to share some of my experiences with pelvic floor physical therapy (PT). This is a topic that’s getting an exciting amount of attention among doctors and people with endo, and I want to add my story to help anyone who might be considering whether this is a good choice for themselves.

Pelvic floor PT is becoming an increasingly common recommendation for people with endo, but many doctors don’t explain why it’s a good idea or provide any guidance for how to find a pelvic floor physical therapist, or what to expect once you get there.

And I want to reiterate: my experiences are my own, and what has worked for me may or may not work for you. Part of navigating a chronic disease we don’t know much about is reading about other people’s trials and errors. So here are some of my own trials, errors, and successes to help inform you as you make your own roadmap to treating your endo.

Why Does the Pelvic Floor Need Physical Therapy?

I first heard about pelvic floor PT about ten years ago when I was working as a full time Pilates instructor. We had a pelvic floor PT visit to do an educational seminar, and she explained that the pelvic floor is made up of several different muscles working in conjunction with our abs, glutes, and back muscles to support our movement and our organs. 

The muscles that make up our pelvic floor can become dysfunctional due to injury, disease, surgery, pain (that’s right – pain itself can cause dysfunction), or patterns of over/underuse. Dysfunctional muscles may either be overly tight or spasmodic and therefore weak, or they might not engage well and be weak. Muscle dysfunction is rarely isolated to one muscle; even if it starts in one place, the dysfunction will spread to other muscles around that joint or body part as they try to compensate for the original weakness.

When it comes to the pelvic floor, the relationships between these muscles, pain, the gut, the brain, and how dysfunctional pelvic floor muscles impact the rest of our movement is complicated. As a result, the symptoms of pelvic floor dysfunction are often mistaken for other conditions – which, in some cases, are caused by (or are related to) the pelvic floor dysfunction to begin with! 

Pelvic floor dysfunction can send doctors on wild goose chases around our anatomy. Symptoms of pelvic floor dysfunction can include pelvic pain, back pain, rib pain, sciatic pain, pain during intercourse, and pain while urinating or bowel movements. The PT who was presenting the seminar said that pelvic floor dysfunction can present itself anywhere between the ribs and the knees.

There is a high occurrence of pelvic floor dysfunction among people with endo, but the nature of that relationship is unclear. It’s not known if one causes the other, but treating the dysfunctional pelvic floor muscles can be a way to treat and manage pelvic floor pain related to endo.

Which brings me to my story with pelvic floor PT. It’s a long one, so go ahead and grab snacks.

After the Laproscopy, Then What?

I had my first (and so far, only) laparoscopy with ablation in October of 2017. At my post op appointment, my gynecologist recommended either birth control or Lupron, neither of which I’m interested in. (I am in no way knocking the decision to try one of these options, they just don’t feel right for me – another blog post). I asked my gynecologist if pelvic floor PT might help, and she said no.

After my lap, my symptoms got worse. As the months went on, I noticed that not only were my periods getting worse, I was now getting similarly intense pain during ovulation and sex. I was also experiencing pain in my thoracic spine and sternum so intense I couldn’t get out of bed on some days. 

The thoracic pain is what escalated out of control. It felt like being constantly stabbed in the back, just to the right of my spine right at where my shoulder blades sit. My sternum felt locked, and the stabbing pain in my chest that accompanied any movement seemed to say, “Try it, and something breaks.” I could barely breathe or lay down without agonizing pain.

After a not at all fun trip to the ER, I went to my primary care doctor who prescribed a muscle relaxer, which honestly did help, even more than the tramadol he also sent me home with. The relief I felt from the muscle relaxers made me think that maybe there was a musculoskeletal component to my pain that wasn’t being addressed. I requested physical therapy, and I got a referral.

Back to Back PT

At this point, I was going to the physical therapist for my thoracic pain. While my pelvic pain was continuing to escalate, it didn’t seem like much could be done for that. I decided to focus on my back, which was so bad I could barely wash my hair or lift a glass of water to my mouth.

The first PT I went to was not a great experience. Along with endometriosis, I also have Complex PTSD as a result of childhood trauma and abuse. I’m sure all the traumatic experiences I’ve had with doctors haven’t helped. Even though I have a lot of experience with manual therapy, the lack of consideration for my medical history combined with the amount of physical touching and so much of his weight on my body made me extremely uncomfortable. I didn’t go back.

The next PT I saw for several months. His general take on my condition was that I needed to learn how to relax. Like so many doctors, this one over attributed my pain to my trauma. Once he heard childhood abuse, I could almost see the connection he made in his brain: Another anxiety case.

I kept going to those appointments mostly out of spite. I could feel that I wasn’t making improvement, but I was determined to go through the steps. I kept trying to bring up my pelvic pain, but the PT would say to see my gynecologist. I also kept going because I felt bad about ditching the first PT. I wasn’t sure if I could just pull up stakes and head to yet another office.

After seven months or so of not getting much further than, “you need to learn how to relax,” I decided to change my approach. It was an excruciating seven months, though. Physically, the manipulations and scraping he did along my spine and ribs would be sore for days, but also it was also mentally and emotionally painful to be made to think that I was the cause of my own pain. I stuck it out as long as I could, and probably for too long.

In my research on trauma, I had uncovered a technique called “biofeedback”. 

I found a PT that was not quite two hours from my home who offered this service. The focus again was on my back, so during a typical session, I sat in a comfortable chair while my PT placed sticky pads on my neck and upper back and a heart rate monitor on my finger. These pads were connected to a laptop that would show a measurement of how much activity was happening in my neck and back muscles.

The idea was that I would be able to use this visual information as feedback. I could see where my baseline of muscle activity was, and then the PT would talk me through meditation exercises to bring down the level of activity.

As it turns out, I’m really good at that. I can take deep breaths and bring down my heart rate and muscle activity. The evidence was right there on the screen. My back pain was unfazed. Maybe, my pain wasn’t because I couldn’t relax after all. 

This PT was also doing some manual therapy on my back, and in one session, I asked her to look at some recurring pain in my right knee. As she poked around she observed that my quads were extremely tight. When she got to my adductors (inner thigh muscles), her eyes widened. “This is hypertonic,” she said. (Hypertonic refers to a muscle that is too tight and/or unable to relax.)

I nodded and told her that’s how my inner thighs always feel, and also my pelvic floor muscles. I asked her if she thought pelvic floor physical therapy might help. She said it absolutely would, and she got me a list of referrals.

From Back to Pelvis

It had now been about a year since I first went to a PT for my back, and I was starting to understand that I’d been barking up the wrong tree. I went through the list of pelvic floor specialists and found one that accepted my insurance.

At this point, I’d been in pain long enough and I was frustrated enough with the process that I wanted to see the best damn physical therapist I could find. I decided to go with a practice in Beverly Hills, which was about a three and a half hour drive from my home. 

When I called to make the appointment, I insisted on seeing the therapist who is the head of the practice. It was a little pushy of me, yes, but I figured I’ve gone too far to see someone who is anything less than an expert in this type of care.

In my first appointment, the PT did a thorough assessment of my posture, movement, and muscle function. The internal work wasn’t as terrible as I thought it would be. It felt like having a trigger point massage done on the inside of my vagina.

I transitioned to a different therapist after a few sessions who turned out to be absolutely wonderful. I saw her once a week for the next several months. She identified that I also have scoliosis, and we alternated sessions between working on my pelvic floor and my thoracic spine. She discovered which of my pelvic floor muscles are too tight (I’m looking at you, right side obturator internus), and her manual therapy plus the at-home stretching and exercises brought a lot of balance to my pelvic floor.

A typical session would start with a quick assessment. From there, my PT would see if my SI joint needed any mobilizing and she would do whatever external work my glutes were needing. If we were doing internal work, she would leave the room while I took off my leggings and got under a sheet.

I would lay on my back with a pillow under my knees and my legs slightly spread. She would sit next to me and with lots of lubrication, use a finger to massage and manipulate my pelvic floor muscles from inside my vagina. Occasionally I would have to do something like press my right knee into her other hand while she palpated internally. But mostly we would have light chit chat in between her asking me how things were feeling.

As my pelvic floor and glute muscles got the stretching and strengthening they needed, my thoracic spine finally started to hurt less. Our pelvic floor is kind of like the foundation to a house. If our foundation gets out of whack, that imbalance will reverberate up and down through our muscles and skeleton. I don’t think even another five years of PT on my back would have been successful if it weren’t for the pelvic floor work.

My progress was slow but steady. I was keeping track of my symptoms, and noticed all sorts of things improving. I wasn’t needing to urinate as often; bowel movements were more regular and far less painful; sex was less painful; my posture was improving; and my back was hurting less.

The biggest surprise for me was just how much pain reduction happened when I addressed my pelvic floor muscles. I had thought for sure that at least some of the burning, stabbing, ripping, pulling, and electricity like pains I had around my pelvis, vagina, and anus were outside the scope of a PT. No way in heck is manual therapy going to make it not hurt when I pee.

I was mistaken. In my case, there was all sorts of pain that became far more manageable when my pelvic floor muscles got some attention. I don’t want to oversell anything, though.

Stuff still hurts. It hurts less, though, and it’s far more manageable. I can have sex most of the time without pain. My bowel movements almost never make me sweat and throw up anymore, except on the worst day of my period. I can generally exercise without my back screaming in pain or my sternum getting locked in place. 

All things considered, for me, PT was totally worth it, and I enthusiastically recommend it to others. That’s saying a lot because it was a huge pain in the ass to get to that step (almost as much as the literal pain I had in my ass). I have more I want to share about this topic, but I’ll leave it there for now. If you’re considering pelvic floor PT for yourself, I hope reading about my experience helps you make the choice that’s right for you.


Read more about pelvic floor dysfunction here: https://www.healthline.com/health/pelvic-floor-dysfunction#diagnosis

Read more about pelvic floor dysfunction and endo here: https://centerforendo.com/the-significance-of-pelvic-floor-muscle-dysfunction

Pathological Demand Avoidance: Christmas Edition

I mostly enjoy being autistic. I appreciate the quirks in how I perceive the world, even though I often feel out of step with the people around me, and moreso during the Christmas season.

There is one aspect of my autistic experience that I could do without and that’s Pathological Demand Avoidance. Also known as Persistent Desire for Autonomy, PDA isn’t something that every autistic or neurodiverse person has. Like everything else, it exists on a spectrum and some autistic people may have more or fewer symptoms of PDA depending on the day or situation.

PDA is described as a set of personality traits that lead someone to generally refuse to cooperate with other people’s requests. This description is a gross simplification, because for many people with PDA, it’s not that there’s pleasure in simply refusing to comply. There can be overwhelming feelings of panic, anxiety and frustration at feeling like we’re not in control of our choices or what’s happening to us.

I am capable of following rules, sometimes without any internal strife. If I understand why a rule is in place and agree with its reasoning, then I will follow it for as long as I need to. As soon as I start to see that a rule isn’t in line with its stated purpose however, I’ll become defiant and obstinate because why should I do something that doesn’t make sense to me?

My PDA isn’t just triggered by rules; expectations in general, such as schedules or socal conventions are also minefields.

Of these, Christmas is among the worst. The five week period between Thanksgiving and Christmas represents so many demands, it can be truly miserable.

First and foremost is the demand to be happy. It’s the hap-happiest season of all, right? Everyone should be merry, jolly and bright. But what if I don’t want to be happy? The pressure to perform happiness and cheer is high, and frankly, I’d like to decide my mood for myself.

Next are the demands for communication. There are Christmas cards to write, phone calls to make, lists to share and receive, and parties to attend. It’s exhausting, and I feel a constant level of anxiety about whether I’m doing any of it right.

There are also material demands. I have to go shopping (one of my least favorite things) and make choices about what to get for people. Is this item something that my brother or mother-in-law or whoever will like? Do they need it? Is it an appropriate amount of money to spend? Have I gotten too many gifts, or not enough? What do I want for Christmas? Is it appropriate to ask for?

Each of these choices presents its own set of demands, and it’s genuinely distressing to feel like I don’t get to deal with these demands on my own timeline. Decisions have to be made, whether I like it or not.

It’s exhausting, and I cry frequently during the holidays out of sheer frustration.

The worst part though, is I hate feeling this way. There’s a part of me that really wants to soften into the cheer of the holidays. I want to feel the excitement and joy that everyone around me is feeling. But then, I have the internal conflict over whether or not I actually want to be happy or if I’m feeling peer pressure to be happy. Does it make a difference? Unfortunately, yes it does.

At best, I’m able to hold all these feelings together: anxiety and frustration at all the demands and expectations, along with happiness at seeing family and being part of the celebration, and a large dose of compassion for myself for the struggle it all is.

To my fellow demand-averse neurodivergents, I hope you have the best possible holiday. May your demands be manageable and your happiness be of your own choosing.

Camp Meetings and Community

One of the first things I did when we arrived in North Carolina was attend a Friday night camp meeting. I remember some of this state’s idiosyncrasies from when I lived here during my teenage years, like Cheerwine and liver mush, but I had never heard of camp meetings.

A bit of googling led me down a rabbit hole of local history. Starting around the end of the eighteenth century, camp meetings were a multi-week event where different church congregations came together to live, attend services and socialize together. The “camps” often consist of a central square surrounded by semi-permanent structures for people to live in called “tents.” A hundred years ago, tents were made out of branches and tarp, but today, tents resemble very basic one or two bedroom townhomes, complete with porches and swings.

Walking around a camp meeting feels less like a religious revival and more like a wholesome version of Bourbon St. The camp meeting we attended had well established tents, enough to make two perimeters around the central pavilion. Older folks sat on benches and in swings while teenagers and families filled up the streets. 

“Walking around” is a central activity of camp meeting, and it involves lots of waving, chatting and flirting for the teens. The air was filled with laughter, talking, and the smells of pies and cookies baking in tents. People were happy, excited to see each other, and the kids were clearly thrilled to run around in the summer night with their friends.

The evening we attended was a music recital for a local music school. We heard all manner of stringed instruments being plucked and strummed through renditions of gospel standards. The audience filled in with hand claps when the younger performers lost track of the rhythm. Afterwards, we walked to the “shack” and got ice cream to eat while we walked around. 

This particular camp meeting is one of the oldest in the state, and the tents are a source of pride for the families who own them. Often in the same family for generations, tents are considered something of a second home, even though they’re only occupied for a couple of weeks out of the year.

Community was a big part of the draw that convinced my husband and I to move from California to North Carolina. We didn’t realize how isolated we would feel on the west coast. Not only was it difficult to stay in touch with family back east, it was difficult to find friends or activities when we lived in such a remote area.

Here, we are closer to family and friends. We are also closer to the ongoing project we’ve been involved with to build an intentional community in southern Virginia. I affectionately refer to this as our hippie commune group.

This group has been going through a rough phase of growth, and we’ve tabled recent business in order to focus on a process of conflict resolution/transformative justice. It hasn’t been easy, and we’ve struggled to maintain traction due to being a relatively small group of busy people. For the past several months, we haven’t really gotten much done except to annoy each other.

Despite all of that, we’re still a group of people committed to each other, a piece of land that we bought and a set of shared goals. 

But are we a community?

The other day, one person in our group was chatting with a friend of his who is well versed in Intentional Communities. She advised him that we shouldn’t call ourselves a community. Instead, we should call ourselves a project. 

When my hippie commune friend shared this insight with me, I bristled. This strikes me as an odd gate to try and keep closed, especially coming from someone who has worked within spaces where communities are made.

I think of our group as a community. We’ve been meeting and talking regularly for over a year, and we’ve been learning about and from each other the whole time. I think of these people as friends. We don’t live in the same place, but is that a prerequisite to be considered a community?

At camp meetings, attendees only live there for one to two weeks a year, and many more people attend than have space to sleep. At some points in history, camp meetings had thousands of attendees on Friday and Saturday nights, and many of them went to their own homes at the end. Were they less a part of that community?

To me, a community can be defined not only by physical proximity, but also shared interests, values, history and goals. Communities can exist entirely online, or in monthly get-togethers to play board games, or in yearly trips to see friends. I’ve seen communities spring up among smokers outside a wedding and drunk women in bathrooms. More than anything, though, I think communities are defined by commitment. 

The camp meeting I attended lost around half of its tents to a fire in 1956 and again in 2019. After both events, the churches and families that were a part of the campground rebuilt. People showed up to do the work, and the campground continues today.

Our hippie commune group isn’t dealing with a fire, but we are navigating a situation that requires some rebuilding. Not of physical structures, because we don’t have those yet, but rebuilding of relationships, trust, and systems. On the whole, we are showing up for this work as best we can, given constraints of time, jobs, and family.

This work isn’t particularly fun, either. It’s a lot of listening and making space for hurt feelings. I think it’s remarkable that we’re getting through this process when any of us could reasonably bow out.

That’s commitment, and to me, that’s community. I don’t think I accept definitions of community that are limited to physical proximity. I think we all need more community, not less. I’m looking for a definition of community that acknowledges the many different ways that people choose to exist together, whether they’re near or far apart.

Millennial and House Hunting , Part 1: Accepting Reality

I never really expected that I’d buy a house. As a millennial in my mid-thirties, the economy has been in a series of sharp upswings and downswings since I was a teenager. The attacks on 9/11 changed everything seemingly overnight; in high school, I watched as friends’ parents were laid off from their manufacturing jobs; and not too long after I graduated, the 2008 crisis in sub-prime mortgage lending led to people losing their homes along with everything else. 

Even without the economic uncertainty that has defined much of my generation’s adulthood, the process of home buying has always seemed opaque and unknowable. What exactly is a mortgage? How do people get them? As a soon-to-be first-time home buyer, I am as mystified as I am skeptical.

Aside from my executive dysfunction around banking and legal documents, I also find the entire concept of owning property to be strange and somewhat distasteful. This planet and its resources that sustain us are living things. Water flows, fire consumes, air moves and trees grow, die and become the dirt again. How is it possible to own a life cycle outside of the one we are born into?

The concept of property ownership becomes more absurd to me when considering questions like, how far down into the earth or up into sky do a person’s rights of ownership extend? Does someone own the view from their property? 

I admit that I would be angry if I bought property with a view only to have another home or development built in my line of sight. But I also recognize that this is ridiculous, and I would prefer to avoid this situation altogether by not putting myself in a position where I may feel entitled to own what I can gaze upon. 

And yet, my husband and I are taking the steps to buy a house.

It’s been a torturous process, full of made-up concepts like “credit scores” and “escrow.” Ryan and I are not making this decision lightly. In fact, we have explored all kinds of alternatives to home buying, including living in a bus or on a boat. If we have to chain ourselves to a mountain of debt, why not make it one that can also sail off into the sunset? 

At this point, we’re not looking to buy a house because it’s a thing we really want to do. The landscape for renting has become appallingly expensive, and if I’m going to spend upwards of $2,000 a month on a place to live, I’d rather not have to deal with a landlord on top of it. 

The cost of housing is increasing at an alarming rate, and while home prices are stabilizing in some markets, rent prices aren’t necessarily following suit. As a renter, the roof over my head is getting expensive at a faster rate than the quality of those roofs is improving. We’re looking into buying because given the options, it seems like the least painful way to meet our basic need for shelter.

In our previous community of Mojave, we decided not to buy property because real estate prices were already climbing in 2014-2015. At that point, people called it a bubble, even though we weren’t even a decade from the previous housing crisis. 

That bubble in Mojave never burst though, and property values continued to climb in our years there, even as we watched houses (including the ones we rented) crumble into the desert. By the time we moved away from California, a two bedroom home in Mojave was around $200,000. These prices are extremely low for California, but the trade off is property that’s 30-40 miles from the nearest city in an area with non-existent or failing infrastructure, with a home that almost certainly needs extensive renovations beyond the fresh coat of paint the most recent realtor has applied.

I rarely saw families moving into these homes, although the signs for the realtors outside them would change. Meanwhile, these homes sat vacant while a growing population of unhoused individuals set up camps in alleys and side streets.

Now, we’re in North Carolina, one of the fastest growing markets for home buying in the nation. Compared to California, this state has relatively higher levels of infrastructure, available water, and access to towns and cities that will make buying a house here hopefully feel less like pissing into the wind.

I’m not completely thrilled about it, though, and I am still working to accept that this is the choice we’re deciding to make. We’ve weighed the pros and cons, and this is where we’ve landed. But I don’t know yet how to reconcile my objections to property ownership with the reality that participating in this expensive, stressful and often nonsensical process is currently our best option to have a place to live.

Out West & Back Again: A Moving Tale

Just over a week ago, I was waking up in Mojave, California. Today, I woke up in Catawba, North Carolina. As far as reality-shaking life events go, a road trip to move across the country ranks pretty high on the list. 

My husband, Ryan, and I had been mentally and emotionally preparing to leave California and our home for the past nine years, but there’s only so much a person can do to manage the endless to-do lists, packing, and waves of sadness and second-guessing that are inherent to this process.

After considering the options for moving our belongings as well as Ryan’s 16 foot enclosed trailer, we settled on the least expensive (relatively speaking) but most labor-intensive option: I would drive the Honda with our two year old cat, Steve, and Ryan would drive a 20 foot U-Haul and tow his trailer. At the last minute, we decided to bring a stray kitten with us who also rode in the moving truck with Ryan.

We didn’t quite retrace our steps when we moved to California nine years ago from Atlanta, Georgia. For that trip, we drove to Indiana first and stayed with Ryan’s family for a night of two, then south to catch I-40 in Oklahoma.

One of our cars broke down in Moriarty, New Mexico and we also spent two nights there. While that trip was an adventure, it wasn’t quite the same epic cross country travel experience that driving over 2,300 miles – almost the entire length of I-40 – in five days turned out to be.

Moving across the country with all of your worldly possessions and two cats in tow is a serious undertaking. We prepped for weeks. Ryan put new tires on the trailer and carefully strapped down his shop workspace inside while I obsessively researched miles between cities and cat friendly hotels.

When we left Mojave, we were as prepared as we felt like we could be. We had spent the last few days feverishly packing since our 500 sq ft apartment didn’t have room to both pack boxes and live there. The U-Haul needed to be returned in nine days, which meant four days to pack and five days to drive. Our belongings got wrapped, boxed, and somewhat unceremoniously tossed into the moving truck.

I should mention at this point that Ryan had never driven with a trailer. We purchased the trailer when he had to move out of the previous shop space he was renting. Tired of having to uproot his personal workspace, he decided to buy a 16” x 8” enclosed car hauler. Inside are shelves, work benches, tool boxes, boxes of books, and other stuff like that. It all got strapped down, including a 1972 CB 400 four (that’s what Ryan calls it) motorcycle. It held together fine when we went for a test drive with the U-Haul.

The next five days would test everything: nerves; physical endurance; driving and navigation capabilities; relationships; and the U-Haul’s towing capacity. What follows is the day by day breakdown of our journey and a few other things.

Day 1: Mojave to Flagstaff (420 miles)

On our last morning in Mojave, we packed the last of our items into the U-Haul and sprinted through some last minute errands. We snapped one last selfie in front of our apartment in the desert, and at 11:30am, we were turning on our walkie talkies and pulling onto the road.

Leaving Mojave, the sun was high above us as we went east towards Barstow to pick up the western end of I-40. We drove through Kelbaker, Needles and the Mojave National Preserve. I said goodbye to the desert and the Joshua Trees as we wound our way through the mountains and high valleys.

We followed I-40 east, alongside the railroad and historic Route 66. Exits are sparse here, and the ones that exist take you to the historic road. The few gas stations are typically backed up with people getting gas, stretching, or browsing the Route 66 memorabilia inside.

Traveling through the desert is harrowing. There are vast stretches of road without any visible life, aside from the creosote bushes, occasional trains, and passing cars. My phone cheerfully let me know each time it lost GPS signal, and that happened frequently. 

As we drove into Arizona, the roads degraded noticeably. There were so many potholes and intense inclines, it felt like California was trying to pull us back down into it. As we crawled over the chewed up roads, I mentally rehearsed how to change a tire. I didn’t know when we left that the first day’s drive would take us to the highest elevation on the entirety of I-40 at just over 7,200 feet.

I watched the semi trucks in front of me bounce (because the fully loaded U-Haul and trailer behind me couldn’t go over 65 mph or so) and tried not to think too much about the load that Ryan was hauling.

As we continued to climb to Flagstaff late in the evening. I noticed Ryan was slowing down more than he had been on the steep climbs. Shortly thereafter, he came in on the walkie talkie and said he needed to find a gas station. 

Thankfully, gas stations were slightly more plentiful as we approached the city and when we pulled over, Ryan checked the oil on the U-Haul. I was holding my phone as a flashlight, trying not to shake it too much while I shivered in the cold air, and the two of us inspected the dipstick. It was dry. 

Ryan poured in a quart of oil, which somehow brought the level on the dipstick to overfull. It was a mystery that was not going to be solved at 9:30pm on the side of a mountain. Thank goodness for that $7 U-Haul roadside assistance.

We made it the rest of the way to Flagstaff, to the Comfort Inn we had booked a room with at an earlier gas stop. 

By the time we got to the parking lot, my nervous system was shot. I was exhausted, worried about the cats, worried about Ryan, and starting to understand the deep stupidity and hubris that made this drive seem like a good idea.

I stood in the parking lot, crying and unpacking the car while Ryan checked in. Several minutes later, he walked back, shaking his head.

“They said we can’t stay here with cats.”

I needed a room. I needed to cry. I needed to eat. I was beyond my ability to reasonably communicate.

“WHAT THE FUCK? We CALLED and ASKED on the PHONE and they said it was FINE.”

Ryan adopted the posture of a person negotiating with a very angry zoo animal. Hands up, he backed away slightly. He tried to counter my shrieking with calmness as he explained that the guy behind the desk tried to call and tell him.

“He tried to CALL? There’s NO GODDAMN SIGNAL FOR MILES, what the FUCK is this guy’s PROBLEM?”

“He said one time they had a cat that…”


‘I know…”


“That’s not a good idea”

I pointed to a hotel next door, “THEN PLEASE GO GET A ROOM OR I WILL.”

Ryan walked off without another word, and came back holding the room keys up so I could see them from a distance.

Finally in a room, I collapsed and sobbed on the bed while Steve cried and the kitten ate dinner. Ryan brought back food for us, and we got to sleep around midnight. 

At 3am, Steve woke me up crying. He was not happy, and he needed me to know it. I started crying because I didn’t know what to do. I woke Ryan up who listened to us both cry, then shoved Steve in his carrier and put him in the car with the windows cracked. I cried more and we slept for another couple of hours.

Day 2: Flagstaff to Amarillo (600 miles)

The second day took us through the remainder of Arizona, all of New Mexico, and into the Texas panhandle. 

I-40 passes just south of the Navajo Nation, the largest reservation in the country, through some truly spectacular landscapes. Mesas jut upwards from the desert floor as you weave through less intense elevation changes. In the valleys,you can see the trains from miles away as they arrive and disappear over the horizon.

As we drove, I noticed that Arizona and New Mexico looked shockingly green. There was grass covering much of the desert floor, and the bushes all seemed vibrant. In my memory from when we moved to the west, I remember these states as beautiful, but largely brown, barren desert.

I wondered if it only looked brown to me on that trip because we were leaving Atlanta, a comparatively lush and green place, or if it looked greener now because we were leaving Mojave. Do we ever see things for how they truly are? Or are we bound to understand the world around us compared to what we’ve already seen?

The roads through New Mexico were in pretty good shape until we got to Albuquerque. We drove through the city in rush hour traffic, through some tight construction spots that made me sweat when I checked Ryan’s trailer in my rearview mirror. There was a stretch of road that was so rough, I almost bit my own tongue as I got shaken around in the Honda.

We kept driving eastward, through more rolling desert with scattered bushes and cacti. The sun was setting as we crossed the state line into Texas. The roads were mercifully smoother, and the gas stations were more plentiful and easier to navigate with the U-Haul and trailer. 

It was unfortunate then, to realize at this point just how poor my nighttime vision is. In Mojave, I didn’t drive at night, and I was fine with that. As the darkness settled around us, I leaned forward into the wheel and squinted to make sense of the road in front of me.

It was getting late, and Ryan needed one more fuel stop for the night. I tried to check my phone for upcoming gas stations, but I was down to 5% battery. 

Of all the complaints I could make about Texas, this one is trivial, but needs said: their exits are not well marked. In the distance, I saw a tall, illuminated sign for a Pilot truck stop. A short while later I saw signs for an exit and thought that had to be the exit for the gas station.

I pulled us off the exit ramp to discover that I was wrong. The ramp was extremely short and went exactly nowhere. I think Ryan may have locked the trailer brakes a bit to not hit me.

In front of me was a road that may have been paved at one point, but was now mostly potholes held together loosely by gravel. Not ideal.

I eased us onto this road, praying for an entrance ramp back to the interstate. What I found instead was a sign saying a cemetery was to the left and a turn that looked like if we took it, we could end up the wrong way on the interstate. 

I stopped the car and grabbed the walkie talkie.

“What the hell do I do?”

“Are we going to take that ramp?”

“The one that says cemetery? And looks like it goes the wrong way? I don’t know, maybe this road keeps going?”

Ryan could hear me starting to panic. He looked at the cemetery ramp and said, “Ok, the yellow line goes on the left and white line goes on the right. That ramp will get us back to the interstate.”

Bless the person who taught him that rule because we were not wrong way drivers that night.

We got gas and even though it was late, the person at the pump next to me struck up a friendly chat. Back on the road, I grabbed my walkie talkie to tell Ryan that we were getting back to the land of small talk with strangers.

We drove into Amarillo. There were more incredibly tight construction squeezes, more lane shifts, and one very spooky person standing on the interstate, between left lane traffic and the concrete barrier.

We made it to the city and settled in at a Motel 6, and their front desk attendant was pleased as punch to have us and our two cats. Whoever decided to shift the Motel 6 marketing away from “cheap and dingy but consistent” to “bring your pets, we don’t care,” is a genius.

Day 3: Amarillo to Little Rock (600 miles)

We checked the trailer that morning before we left. Maybe we shouldn’t have. When Ryan opened the side door, I could hear the sound of heavy objects falling and breaking. 

I walked around the trailer to find him heartbroken, standing over the broken remains of an antique glass exit sign from his college he had hung in his shop. I peered around the door to see an absolute avalanche of upside down boxes, books, papers, and tools.

The most important items were still in place: the motorcycle was upright and strapped down, his 3D printer and computer were somehow still on their shelf. One of the other main shelving units had wrenched itself away from the wall, probably in Albuquerque, tearing its anchor hooks right out. Another shelving unit had failed completely with shorn and twisted metal. It’s a good thing we have our tetanus shots.

We had to pull stuff out of the trailer and into the U-Haul to close the door. Sweating, running late, and more stressed than we’d been, we set off towards Little Rock.

Thankfully, the roads in Texas continued to feel smooth like butter. The landscape was starting to transition from more desert-like to more plains-like, and I started to see actual trees dotting the landscape as we approached Oklahoma.

We had more radio stations to choose from, but they were mostly country, western or Christian stations. I was struggling with fatigue, which was unfortunate since we were only a couple of hours into the drive. I found a conservative talk radio podcast and found that to be surprisingly engaging. Although, it was bizarre to hear two Republicans from New York and New Jersey talk about the Los Angeles mayoral election.

We crossed the Oklahoma state line and I stopped at the welcome center where they had free and absolutely life changing coffee. Back on the interstate to catch up with Ryan (who didn’t stop), I discovered that Oklahoma drivers go fast. With speed limits of 75 mph and the best roads along I-40, it’s hard not to.

We continued through the state without too much issue besides increasing boredom and body pain. We were passing through Oklahoma City around lunch time and about two miles from our next exit when we encountered the worst driver in Oklahoma.

Up to this point, the entrance ramps had been long and extremely visible. In the city, we came up on an entrance ramp that was a short U-shape and there was a car sling-shotting around to enter.

We were in the right lane, and I checked my mirror to get left. A silver SUV was just behind me, no time to change lanes. I stepped on the gas to let the incoming red sedan zipper between me and Ryan, but the red sedan sped up too. 

I let off the gas to slow down, and in that moment, the silver SUV didn’t pass me, they got between me and Ryan and hit their brakes.

Now, the red sedan was boxed in on my right, and Ryan was breaking hard. The trailer brakes locked but Ryan kept control and took the U-Haul into the entrance ramp as the silver SUV served back to my left. For a moment, I was axle to axle with the red sedan and silver SUV. I have no concept of what lane any of us were in, but it was tight. 

The silver SUV and red sedan both got the hell out of the way and Ryan got back on the interstate behind me. I do not know how we all drove away from that, except for Ryan’s excellent response time and judgement. Certainly no thanks to the jerk in the silver SUV.

We stopped for gas and to breathe. We still had several hours of driving ahead of us.

The rest of the drive that day would be lost to a haze of anxiety and adrenaline, if it weren’t for a gas station in Arkansas where I learned my new favorite pick up line.

I was wearing my usual go-to outfit of leggings and a tank top, and I noticed a woman checking me out in the gas station as I looked for the bathroom. I was honestly concerned that I was going to get a comment about being inappropriately dressed or something (considering I haven’t worn a bra since 2019).

I was turning a corner, and I heard from behind me, “Those pants lie.”

Confused, I turned around. She said, “I got a pair of those leggings, but my ass doesn’t look anything like yours.”

I started laughing, told her she would be fabulous in these leggings, and had a lovely and highly unexpected chat. I am grateful to that woman for completely upending my expectations.

I barely remember getting into Little Rock, except that I took a wrong turn and pulled us into a tiny little parking lot that mercifully had another exit. We got to the Motel 6 in North Little Rock and Ryan went to check us in.

“I got us a room. You won’t believe it, there’s a guy in the lobby propositioning a sex worker.”

“You know, I absolutely do believe that.”

“I heard her say she had her own protection and she patted a gun holster in her bra.”

“That sounds smart. What room are we in?”

We entered the room to a thick and sticky smell of cigarette smoke. Every surface had cigarette burns, despite the available ashtrays. I could feel my head swimming. It was 10:00pm.

“I don’t think this is gonna work.”

Ryan took this with remarkable pluck, and immediately went and got us another room, this time non smoking.

The new room however, was next door to the gentleman who was still negotiating with the sex worker. We tried to enter quickly, and I saw that the door to our room had clearly been kicked in at one point, with wood splintering from the jamb. I was still feeling that natural high that comes from avoiding an interstate collision. This would work.

We sat in the parking lot and confirmed for each other that yes, that was a messed up day of driving, and yes, we were lucky to be alive. 

We ate Waffle House waffles in the hotel bed, and I fell asleep laughing.

Day 4: Little Rock to Knoxville (530 miles)

It was raining when we left Little Rock and kept raining pretty much until the Tennessee state line.

I-40 is the only east-west interstate corridor in Tennessee, and Tennessee is the longest state along the whole of I-40. Called “Tennessee’s Main Street” it goes through Memphis, Nashville and Knoxville, weaving through mountains, wetlands, and rolling hills.

If you want to experience I-40 but only have one day, drive through Tennessee. The elevation changes are less intense than out west, but the twists, turns, and traffic make up for it.

Up to this point in our trip, traffic would die down between big cities, but not in Tennessee. Entrance and exit ramps became shorter and much sharper. Gas stations were smaller.

Getting into the state was tedious and we had more stops than we wanted. Ryan jackknifed the trailer at one gas station that called itself a truck stop but obviously was not. He was concerned about hitting a parked car, cut it too tight, and clipped the trailer into the back bumper.

He got the trailer un-jackknifed and a kind person in the lot let him know he had space to leave.

A mile down the road, my walkie talkie died. Another stop. Another small, shitty gas station. 

Back on the road. More traffic, more construction, more aching muscles.

We needed to eat, so I thought aid use one of those “parking areas” on the interstate and make sandwiches. They’re for semis, but the ones in  Texas were like rest areas without bathrooms, paved and easy to access.

Tennessee could take a lesson here. I pulled into a parking area onto a ridiculously short exit ramp to a cramped gravel area with a semi backing up directly where I was needing to go. 

The way through this parking area was ridiculously tight, and there was a truck driver standing and yelling up at another driver. Not a great sign.

Back on the interstate, hungry and tired.

Somewhere between Nashville and Knoxville, around 4pm, we finally found a Love’s truck stop with the best damn Arby’s I’ve ever eaten.

Back on the road, a 2-3 hour drive turned into 4-5 hours with traffic.

Exhausted, we pulled into a Motel 6 and I looked at the full parking lot with some alarm. Indeed, there was no vacancy. 

We called other hotels. One was charging over $200 a night, even though we weren’t buying the room, just staying there for the evening. Others wouldn’t take cats, which is laughable considering that hotel rooms are routinely torn apart by human beings, and they still get to book rooms.

We found a room down the road. Google decided to navigate us through a series of parking lots that frankly had more curbs than necessary. Knoxville parking lots are also full of craterous potholes, their depth disguised by the puddles from the rain.

We were so close to a room when Ryan stopped the U-Haul. He wouldn’t fit under the entrance facade at the hotel. He couldn’t go the other way. He was gonna have to back the trailer up.

In the parking lot, guiding Ryan back so he didn’t hit anything, I put my hands on my knees and almost lost the contents of my stomach. 

I spent the evening coming up with my list of complaints for Google. Foremost on my list, why is it so hard to find an actual truck stop when searching on Google Maps?

Day 5: Knoxville to Catawba (220 miles)

Over coffee, Ryan and I caught up about the driving. He had the kitten with him, who had spent most of the miles curled up in Ryan’s lap. I’m grateful for the amount of company and calm that the kitten provided, considering the rest of Ryan’s driving experience.

Somewhere in Tennessee, the U-Haul rolled over to 130,000 miles, and the steering was just as loose as you might expect. Which is to say, it was very loose. As he described driving the U-Haul, and all of its various sounds and shudders, he started laughing. “I am absolutely thrashing that truck across the country.”

We left Knoxville, and I barely felt the pain in my back and neck as we started the last leg of our trip.

We had some more intense twists and turns, but mostly downhill through the Pisgah National Forest into North Carolina. This traffic was also quite dense, and I was sandwiched between Ryan and the U-Haul behind me, and a Frito Lay semi truck as we wound our way down the mountains. 

We made it into North Carolina, and about twenty miles west of Asheville, we had our last fuel stop. I was going to suggest we get a biscuit for breakfast at the Country Kitchen next to the Travel Center when I saw Ryan shaking his head.

“I locked the keys in the U-Haul.”

“Say that one more time, please.”

I couldn’t even be mad. I’ve locked myself out of so many cars, I made sure to carry my own extra set of keys for the trip, but the U-Haul wasn’t so well equipped.

The kitten was in the uhaul though, and the windows were up. It wasn’t a sunny day, but I was still worried, and not to mention, we were so close to home. We had just driven through a solid hour of mostly stopped traffic, and I assumed any locksmith would have to drive through the same.

Ryan was trying to apologize, and was sounding pretty frazzled. I handed him my phone to Google something, since he locked his in the truck.

I walked around to the truck driver entrance and proceeded to ask everyone in the vicinity if they had a slim Jim or any way to open a locked at door. 

Within a few minutes, I met Joe, who followed me to the U-Haul and proceeded to vigorously jam things down the window. He didn’t have any specific tool he was using, so I kept asking.

I rustled up a couple of wire cost hangers from the truck repair shop behind the gas station, and brought these to Joe. I found another truck driver who took one hanger and one door while Joe worked the other.

I eyed the bricks that lined the landscaping, and considered how much Uhaul might charge us for a broken window.

Thankfully, within a half hour, Joe had us back in the U-Haul. It was just in time, too, because I had found someone who was very confident that he could snap off the U-Haul’s antenna and unlock the door in a jiffy.

We were about an hour and a half away from our destination, and the traffic in North Carolina thankfully died down as we entered the foothills. This area of North Carolina, between the mountains and the piedmont region, is the definition of quaint. Networks of country rounds take you through rolling hills and mixed deciduous forests, punctuated by homesteads and small farms.

We exited the interstate and made our way through ten miles of very narrow, very curvy roads to our new address.

I tried so hard not to miss the driveway, but I did. We would have to turn around. Thankfully, there are plenty of churches with large lots so we got back on the road, going even slower, to not miss the house.

Unfortunately, Ryan pulled the U-Haul into the wrong side of the yard. The right side of the yard would have had room for the U-Haul and trailer to circle around. The wrong side of the yard did not.

Now, we were going to need to back the U-Haul up, into the road, in the middle of two blind curves to figure this out.

Ryan had that frazzled sense to him again, so I called for help. We have friends an hour away in Charlotte with trailer-backing experience who immediately got in their car to help us.

Luck had it that Kendra, another friend whose mom owns the house we’re renting, called to check on us. I explained the situation, and she said her husband might be free to help.

It hadn’t occurred to me that the house we’re renting is less than a mile from a lake, and you’d be pressed to throw a stone in any direction and hit someone who hasn’t hauled a trailer.

Kendra and her husband arrived, and he backed that U-Haul up, whipped it around, and backed it up again to put the trailer next to the house.

Unfortunately, while that was happening, Kendra’s mom drove her car over a tree stump and got it stuck in the yard. I can’t say that nobody needed a tow truck on our journey, but the person who did wasn’t either of us.

Despite a somewhat chaotic first few hours in our new home, the hospitality and kindness we have enjoyed here has been overwhelming. It took a few days for us to know what time zone, state, and general state of being we were in, but we’ve been glad to orient ourselves to this place.

This is an enormous and beautiful country, and driving I-40 is an excellent road trip to see it. I can’t recommend the U-Haul part, but if you’ve got five days, I can’t think of a better adventure.

The Flight of the Butterflies

Every spring, for about two weeks, monarch butterflies take over the air with their annual migration. They’re so thick you can’t walk down the street without having them thunk softly into you. As far as springtime events go, a massive horde of butterflies is far better than the bee swarms that appear looking for shade and water, or the occasional locust clouds that set upon Las Vegas. 

The butterflies make a beautiful, if somewhat chaotic procession. Their large, delicate wings work so hard to keep them aloft, and for so little forward progress per flap. They move as quickly as they can, but it’s not fast enough to navigate the perils of modern human-centric development. 

Each year, thousands of butterflies are killed by cars, trains, and other human inventions. The butterflies create a grotesque layer of broken wings and goo on car hoods, and we all sigh and shrug our shoulders about the loss. 

This blog post is what happened when I asked myself, what if we did things differently? What if we didn’t commit to a yearly butterfly massacre? What would the rest of our society have to look like in order for us to value butterfly lives as much as our own? 

Photo by Suzy Hazelwood on Pexels.com


From: The Department of Pollinator Preservation

Date: 5/19/2052

It’s that time of year again! We are weeks away from welcoming thousands of monarch butterflies as they flutter through the desert in their spring migration. 


  • Butterflies have the right of way! On migration days, there should be no daytime vehicular traffic between 7am to 7pm. In order to preserve butterfly lives, roads will be limited to emergency travel only. Residents may travel by foot, bicycle, skateboard, or other similarly sized, low-speed mobility device. 
  • Contact your local Community Support Network to coordinate deliveries of food, water, medicine, and check-ins for yourself and your neighbors.

Activities throughout the month:

Residents are connecting at weekly neighborhood potlucks to plan ahead for no-car days. 

  • Potlucks are every Thursday from 6pm-8pm at several locations throughout the community. 

Photo and Video Contest: Show us your best pics of the monarch migration, your milkweed garden, or any other butterfly moments you can capture on film! Winners will be announced at the Butterfly Days Festival.

At the Library: At your local library branch, you can find butterfly themed activities for all ages. Learn about how butterflies fly, how scientists track their movements, and how caterpillars turn into butterflies during free, weekly presentations.

At Your Community Garden: Gardeners throughout the area have been tending their milkweed and native flowers. Sign up for your own plot, or learn about volunteering in one of the community plots.

Butterfly Days Festival

Saturday, 8:00am

Memorial For Lost Monarchs

We open the festival with a memorial service to those butterflies whose lives were cut short by previous generations of humans who did not honor their passage. 

Saturday, 9:00am-5:00pm

Monarch Festival

There will be free milkweed plants and local flowers for residents to take home, and local botanists will be available to answer any questions. Enjoy flower and butterfly-themed snacks, listen to local music, and see what’s new in our community gardens.

Accepting My Autism

I was 35 years old and really getting to know myself. Now, I’m 35 years old and autistic, thanks to a recent diagnosis. It feels like something new, but I’ve really been autistic all along. 

All the different things I obsessed about collecting as a kid – rocks, books, clocks, pogs, small figurines? Might have been autism. The hours I spent joyfully arranging and rearranging my collections? That could have been autism. My intense childhood “tantrums” where I would hold my breath until I passed out? My constant struggle with being socially “appropriate”? Also possibly autism.

Every day brings a succession of tiny earthquakes that are rattling my life into focus. What does any of this mean, and what does it mean for me to accept that I’m autistic?

Like many stories about receiving an autism diagnosis, mine starts with a lifelong feeling of being different from other people. However, the possibility that I might be autistic didn’t cross my mind until I was in my late twenties and learning more about trauma. I knew that I had CPTSD from childhood abuse, and as I read different articles and blogs, I kept noticing places where my experience with CPTSD sounded a lot like other people’s experiences with autism. 

When I read about autistic meltdowns, I thought, “Wow, that sounds exactly like my panic attacks.” But it hadn’t yet occurred to me that my panic attacks might actually be autistic meltdowns. 

As I progressed with trauma therapy and EMDR, I noticed that some things were getting better for me, while other things felt like they were getting worse. I felt like my internal experiences – my thoughts and my emotions – were improving. I felt a shift toward more mindfulness and reduced negative self-talk. I felt my resilience increase. Finally, my brain felt like a nice place for me to be.

As a result, I was more able to understand and express my thoughts, emotions, and needs in a given moment. However, that led to me realizing that I frequently experience mental and emotional distress. It was a bummer at first, to have flashing moments of feeling present and centered just to realize that actually, my nervous system is jangling due to some previously unrecognized input. 

The distress from my own thoughts, flashbacks, and emotions was lessened, but I was noticing how distressed I was by noises, bright lights, the feel of my clothes. I realized that I have always struggled to keep track of dialogue in movies and conversations. I could see how other people’s emotions can be overwhelming for me, regardless of whether they’re expressing anger, sadness, or even joy.

I especially noticed how stressful I found social interactions. I was more confident in how I was feeling and what I wanted to say, but I was also paralyzed by not knowing if what I wanted to contribute was appropriate, relevant, or something that I needed to say at all. In groups of people – even online – I will shake, sweat, and feel my stomach tie into knots with the effort of deciding if I should speak up. This was not getting better with therapy. 

It’s Autism, Actually

Around this time, I subscribed to the Trauma Geek on social media for the excellent information they share. I started noticing their posts about autism and other parts of the neurodiversity spectrum, and more than once was totally floored by how much I saw myself in them. 

One day, I decided on a whim to take some online autism assessments. All but one indicated that I was almost certainly on the spectrum, and I should see a doctor about getting a formal assessment.

So I did. 

As it turns out, I’m autistic. 

As a kid, I was called argumentative, defiant, lazy, moody, negative, rude, and selfish. As it turns out, I was autistic.

As an adult, I’m often considered irritable, hypersensitive, unreliable, unemployable, and too opinionated. As it turns out, I am autistic. 

This paradigm shift has been profound. For much of my life, I’ve been told that if I just try harder, I could be like other people. With the right therapy, meds, diet, exercise, and good old fashioned effort, I could overcome my crippling anxiety, trauma, and whatever-else-is-wrong-with-me to be a better daughter, a better friend, a better student, a better employee, or have something like a “normal” life. 

I honestly believed it, too. I have been holding onto expectations for myself, that if I go through these steps, then one day, I wouldn’t be so different. But that isn’t how this works. I realize now that I’m not going to therapy myself out of being autistic, and I’m not sure that was a helpful approach for anxiety or trauma, either. These daily earthquakes are also revealing the fault lines of my internalized ableism.

Accept and Accomodate

Accepting my autism means accepting that some things are hard and overwhelming for me because my brain works differently. Social situations, schedule changes, unanticipated demands or expectations, phone calls, and certain sensory input often cause intense physiological reactions that can inhibit my ability to complete “normal” tasks. 

Acknowledging this reality doesn’t mean accepting that everyday tasks must always be a succession of miserable struggles. Rather, it opens up opportunities to do things for myself to make my experience a little easier. I can wear headphones while I’m shopping. I know what kinds of clothing and food are best for me to avoid sensory distress. I can add to my overall resilience bank by getting enough sleep, moving my body, and making time for my special interests. I can have compassion for myself when I do all of these things yet still struggle. 

I’m figuring out how to accept my autism, but I wonder if other people will. There are things I can do to accommodate myself, but there are also things I need from other people in order to feel like I am safe and belong in a particular place. 

Will it be ok if I visibly stim around other people, or will it lead to further social isolation? Could I ask a potential employer to work from home and have schedule flexibility or would I be seen as even less reliant and employable than I already am? 

I’ve been autistic my entire life, and it feels like there have been consequences for that. Do those consequences really go away once I self-disclose my autism? 

So far, the answer to that has been no. I told my dentist about my autism diagnosis because I struggle to make it through a simple teeth cleaning without turning into a crying, hyperventilating mess. I figured that having information about my diagnosis might help contextualize some of my experiences with them as a patient. My dentist laughed and said that everyone is uncomfortable at the dentist.

I told my primary care doctor about my diagnosis, and his first response was incredulity. He was skeptical about where I received this diagnosis, and then proceeded to tell me that I’m smart, and smart people think differently, but that isn’t the same thing as autism. I guess my doctor doesn’t think smart people can be autistic, or maybe he thinks autistic people can’t also be smart. 

I’m grateful to my partner and the friends with whom I’ve shared my diagnosis, who have been absolutely lovely and understanding as I figure out how to express my autistic self. It’s quite frustrating though, to realize there are levels of acceptance that are up to other people. Of all the things I’ve been working to accept, that has been the hardest. 

How I Exercise With Endometriosis

Exercise can be a double edged sword for people with endometriosis. We all know that exercise is beneficial. Resistance training helps to build bone density, muscle mass, as well as coordination, muscle strength, and endurance. Cardiovascular exercise helps improve our heart and lung health. 

That’s great! The problem is that for many of us, exercise can also initiate pain that might last for a day or the rest of that week or month. It can be very difficult to exercise enough to stay mobile and strong, but not so much that we end up in bed with a heating pad.

When I was a personal trainer and Pilates instructor, one idea I learned about is periodization. This involves breaking down larger fitness related goals into smaller phases, which are organized with with increasing difficulty and rest periods.

In its strictest definition, periodization is most often applied to athletes or people training for strength gains. However, it’s an idea that can apply to anyone’s fitness routine, and I think it applies especially well to my menstrual cycle.

What works for me is to think about my exercise routine as part of my menstrual cycle, and tailor my workouts accordingly. Here’s what that looks like:

Days 1-3: When I’m on my period and my pain is the highest that it gets, I don’t even try to exercise. These are days where I’m taking lots of anti inflammatories, and I’m trying to just make it from the bed to the bathroom.

Days 4-7: As my period winds down, I’ll get back to what I consider my exercise foundation: stretching, walking, and basic Pilates mat exercises. I’ll spend thirty minutes or so stretching my quads, hamstrings, glutes, ab muscles, and back, and then I’ll either walk or do Pilates exercises for an additional 15-30 minutes.

Key Exercises:

  • Kneeling Quad Stretch
  • Supported Happy Baby Stretch
  • Shoulder Bridge
  • Activation exercises for Transverse Abdominus
  • Spine Extensions

Days 7-14: This is where I begin to add to my workouts. Stretching, walking, and Pilates remain the foundation, and these things are now my warm up routine. I’ll also add in some bodyweight exercises like squats, planks, and lunges. I’ll aim to do 3-4 bodyweight exercises in a workout, generally around 3 sets of 10-15 repetitions.

Key Exercises:

  • Bodyweight Squats
  • Planks
  • Upper Body resistance band exercises

Days 14-21: If my body is feeling good, I’ll make some of those body weight exercises into weighted exercises using kettlebells or dumbbells. I might also add in some more vigorous bodyweight exercises like burpees or jumping jacks. 

Key Exercises:

  • Weighted Squats
  • Walking Lunges
  • Upper Body Dumbbell exercises

Days 21-28: I’ll begin to wind down my workout intensity, returning to bodyweight exercises. As I feel my period approaching around day 25 or 26, I’ll bring my focus back to walking, stretching, and Pilates. 

Key Exercises:

  • Bodyweight Step Ups
  • Pilates Ab Series
  • Pilates Roll Up

Incorporating this rhythm into my workout routine has been very helpful for me in maintaining my muscle mass, mobility, and weight. It feels like I’m spending less time fighting my body and more time exercising because I’m recognizing my own limits and working within them. 

Maintaining consistency in my workouts also lets me track how my body feels over time. If my warm up exercises are feeling particularly challenging, then I’ll moderate my workout accordingly. But, if I get through my warm up and I’m feeling good, I might try for a few extra reps.

Sure, there are times where I either work out too much or not enough and end up in more pain than I would rather be in. It’s a process of personal trial and error, and keeping a journal to track your activity will be crucial in determining what exercise intensity is appropriate for you.

I would love to hear about your strategies to stay active while managing your endometriosis! Please share your favorite workout plans, YouTube channels, or exercise equipment that keeps you moving!

A Blog Post About Trash

See my interview about this topic with Scripps National News!

My rural, desert community may be small, but it has a few eye catching features. First are the windmills, which make up the largest wind farm in America. For as big as they look from the gas stations on the 58, you don’t really get a sense of how massive they are unless you take the scenic drive up into the mountains. They’re wonders of engineering, design, and a daily reminder that people can come up with pretty big solutions when we try.

The next thing you’re likely to notice is the garbage, because it’s hard to miss. I’m not trying to be mean or air my town’s dirty laundry. Anyone who passes through can see it, and those of us who live here are intimately familiar with the refuse that lines our fences and curbs. The shrubs that grow in vacant lots look like weird little Christmas trees, with their branches full of shredded plastic bags, glittering in the sun like garland.

The reason we are home to the world’s largest wind farm (I know, Tehachapi likes to take credit) is that our area has uniquely windy conditions. Average daily winds are around 10-20 mph, and as I write this, the winds are blowing closer to 40 mph with gusts up to 60 mph.

Today is also trash day, so people are starting to set their garbage cans out. What happens next is pretty predictable. The wind topples over garbage cans, and then it’s not long before it gets carried through the streets and across the desert.

The wind isn’t the only natural force that contributes to our trash problems. The dogs that roam through the area will gladly open up a garbage bag, and a raven can empty a trash can in minutes looking for something to eat. 

As a result, it looks like Mojave is home to a bunch of litter bugs who just don’t care much about their community. This makes tourists who pass by less careful about catching the trash that slips from their cars. Even in our local Facebook pages, we often blame each other for the trash that piles up. Vaguely passive aggressive posts will finger wag at “those people” for not picking up after themselves.

A Mojave alley. Photo by Joyce Nash

Not only are our trash receptacles inadequate for our environment, there’s also not enough of them. In our park, which is often strewn with litter, there are only five garbage cans! There used to be more, but they were removed and only those few were replaced. 

We are also a community with high rates of poverty and a higher than average rate of renters vs. homeowners. There are frequently many people (often extended family) living in one house or apartment. The single garbage cans allotted to each address are just not enough.

Few homeowners are eager to spend more money on additional garbage cans for their tenets, and few renters want to make it a problem with their landlords (especially when there are so many other problems that need to be fixed). And so the trash piles up.

It is easy to see our trash problem as an issue of “personal responsibility”. If all of us in Mojave would just be personally responsible for our own trash, and maybe also the trash that blows into our yards, then the problem would be solved. 

It wouldn’t, though. That doesn’t address the issue of not having enough receptacles to hold it, or what to do when the wind, birds, or dogs inevitably redistribute it. 

Our trash problem isn’t because we’re too lazy or irresponsible to deal with it. Our trash problem is a failure of infrastructure and civic planning. 

We have figured out how to harness energy from the wind with giant windmills, but we can’t figure out a wind-proof trash can? We have trash cans that keep out bears, but not ravens?

Considering all the other incredible things people have figured out, this trash problem doesn’t seem impossible. It is a matter of priorities, though, and for the leadership in Kern County, things like “providing a basic level of services” and “ensuring safety and quality of life” seem to be low on the list.

I’m not writing this because I have a clever trash related solution. I wish I did, because the wind has already knocked one of my neighbor’s garbage bags out of their can. What I want is for us to challenge the story we tell ourselves when we see trash piled up against fences, whether they’re here in Mojave or somewhere else.

Did that trash get there because lazy people didn’t pick up after themselves? Or did the trash pile up as a result of lots of different factors?

What we think about trash on the road matters. If we believe it’s the result of lazy people, then that will impact how we treat those people and that place. Lazy people don’t need help, they just need to get to work. But, if we see the trash as a failure of planning, leadership, and collective action, then that opens up all kinds of possible solutions. 

I haven’t really touched on the environmental impact of all this loose garbage, or the health and safety risks to people and animals that it presents. All of these problems are a real part of the day to day life here. Do you avoid walking in sandals due to dirty diapers, food wrappers, and other trash on the sidewalk? I do.

For as urgent as these problems are, I doubt we’ll get to a solution as long as we see the trash as a moral failing of our community. The only thing lazy here is the “personal responsibility” argument, so let’s put it where it belongs: in the trash. 

Endometriosis 101: Period Tracking

One of the worst things about endometriosis (besides the pain) is how little is known about this disease. Researchers don’t really know what causes it, and doctors don’t have many good answers when it comes to treating it. Period tracking is one way to learn about your cycle and make more informed choices for yourself.

Getting to a positive diagnosis is bad enough, and many of the symptoms that are widespread among endo patients – like GI pain – are not commonly recognized as part of the endo experience. Even the most hallmark symptom – severe menstrual pain – is often dismissed as normal.

It can even be tough to recognize endo symptoms within our own bodies! Given the cyclic nature of endometriosis, symptoms seem to mysteriously appear and disappear. With so little information available, it’s easy to wonder if new symptoms are endo-related or not. This leaves a lot of patients in the dark about what is going on with their bodies, and what kind of treatment they may need.

Whether you’re new to your endo journey or not, tracking your periods and symptoms can be a powerful tool to help you understand your body and your symptoms. The information that tracking provides will help you make choices about your diet, lifestyle, or medical treatments.

Depending on your symptoms and needs, you could track menstruation, ovulation, and sexual activity. Since diet can play a big part in endo pain, tracking food intake and exercise can help you see patterns and cycles. I have learned so much about my cycle by tracking, and it is so much easier to see what I can change when pain starts creeping up.

There are very few one-size-fits-all answers for endometriosis, and it can often feel like taking shots in the dark to try and find some relief. When I started to track my diet, I noticed I had a lot of dairy, sugar, and carbs from beans. I was having pretty intense GI symptoms, so I cut out dairy, reduced sugar, and traded in a couple of servings of beans each week for chicken.

In the past year, I’ve also learned to not do all of the chores on the same day.

I prefer to use a notebook and pencil, but if an app would work better for you, that’s great! The best method to track your symptoms is the one you can stick with. It does require setting aside time throughout your day to jot down notes, but it’s worth it.

*Paper and pencil also provides protection for your data from cell phone carrier and app developers, which is a lot more important post- Roe.

Tracking can also help at your doctor’s appointments. You’ll have a better understanding of your own symptoms, how they impact your life, and what you’ve tried. Having a physical notebook (if you go that route) can also indicate to your doctor that you’re serious about your symptoms. This can backfire, though, and doctors can see this level of note taking as a sign of obsessiveness and anxiety. That’s a sign for you to get a new doctor.

On the whole, symptom tracking has been one of the most helpful tools I’ve picked up to help manage my endo. If you would like to get started, check out the links below to get you going. Ultimately, it doesn’t matter what your tracking system looks like, as long as it works for you!

Here’s How to use a Bullet Journal for Better Mental Health from Buzzfeed.com

29 Bullet Journal Layouts for Anyone Trying to be Healthy from Buzzfeed.com

That New Doctor Feeling

My palms are sweaty. My knees are weak but I don’t eat spaghetti. No, I’m not just revisiting one of the biggest songs of my high school years, I’m thinking about the appointment I have tomorrow with a new gynecologist. It’ll be my first pap smear in at least five years. (I’ll talk about why the long gap in another post soon.)

Honestly, the pap smear part isn’t what is so scary. I’m expecting that to be somewhat painful, especially since I’ve had pelvic and bladder pain spring up today as I get close to my cycle. It might hurt to stand up straight, but getting prepped for this appointment feels an awful lot like squaring up for a rap battle.

I’ve got my lines that I’m working on, making sure I have a good hook in my intro. I want to sound prepared but not paranoid, well-read but not obsessive. I want to reflect a calm, cool, not-at-all-anxious demeanor while still communicating the reality of my symptoms. Me? Anxious? Psshhh, my heart rate is that high because I just ran a mile. Yup, right before the appointment. Just out running.

As I anticipate what the doctor might say, I don’t want to get stuck in Worst-Case-Disaster thinking. But also, I’ve been to doctors before. I have some experience to draw from as I get ready.

Doc: Tell me about your symptoms

Me: I have endometriosis. So, pelvic pain; back pain; urinary pain; bowel pain; GI pain; pain during ovulation; extreme menstrual pain.

Doc: Birth control!

Me: Sorry, I was on many kinds birth control for several years and it didn’t help my symptoms. I was also dangerously depressed and suicidal.

Doc: Lupron! Orilissa!

Me: Sorry, not an option for me.

Doc: Well, I’m not sure what you expect me to do then.

Me: Can you please just stick the q-tip up my vagina and do a pap smear?

I’m afraid of being brushed off, dismissed, and ignored. I’m afraid of being made to feel like I’m making poor choices for my disease management by someone who may be working from outdated or inadequate knowledge. I don’t want to have to be an advocate for myself, I just want to just be a patient.

My goal for this appointment is mostly to get a pap smear. I don’t think anything is wrong, but it’s been a while. I’m also hoping to find out what are the tests or imaging I should be doing to monitor the impacts of the endometriosis. I want to avoid another laparoscopy for as long as possible, but it seems like a good idea to keep track of things in my blood work, right?

We know that endo can cause imbalances in vitamin and mineral levels, especially B6, B12, and vitamin D. Maybe that’s something to keep an eye on? I also know that my liver showed signs of damage in my last ultrasound, so I’m hoping to find a way to ask whether that requires monitoring without sounding like someone who spends far too much time thinking about their own liver.

So, until tomorrow, deep breaths and lots of pelvic floor stretching.