Medical Paperwork Sucks, But My New PT Doesn't!

I saw my new PT for the first time today, to address hypermobile Ehler-Danlos Syndrome (hEDS). She mentioned how glad she was that I dropped off the paperwork yesterday, because she was able to really read and absorb it. 

I hate, hate, hate filling out medical paperwork. First, the obvious: It always has a section with "please list all surgeries with dates." I started just lumping 2010-2015 together, because of all the hysteroscopies, egg retrievals, and the pericentesis when I had OHSS. It hurts less that way. 

It is interesting to see that all my surgeries are either joints gone wrong or reproductive system gone wrong. Alllll the way back to my first year of life. Hmm. 

I also hate rating scales. When talking about the pain I experience, it seems not to fit into any of the available boxes. I end up writing psychotic notes in the white spaces that say things like "my pain doesn't prevent me from doing things about the house or walking, but it does punish me. I can do it, and then I have to lie on the floor for a while to recover." 

That! the laying on the floor -- I'm still flabbergasted that it is a perfectly reasonable way to give your body a gravity break, a way to find its place in space and feel supported, when you have hEDS. I was listening to the Bendy Bodies podcast, and the doctor with hEDS who hosts the podcast was like "I can do xxx, but then I have to lie on the floor." LIKE IT'S A NORMAL THING! It tickles me that my so-called odd behavior at the end of the day (or between class periods) where I lie on the floor, or the windowsill, or a table...is a perfectly reasonable accommodation strategy for my unmoored body! Ha. You can bet I'm going to lord that over everybody at school who has thought it's bizarre that I do that! 

Back to PT paperwork. 

I also had a hard time because I dropped the paperwork off, and then started thinking, "what if they aren't fluent in hEDS?" Which is totally bonkers because this place was recommended to me by my Pilates instructor FOR being familiar with hEDS. I did a whole bunch of research into PT and hEDS, and found a fact sheet written by a PT who explains things and what might be contraindicated. I printed it and brought it. 

Luckily, the PT was like, "is there anything you need to know about your diagnosis? It's a lot to take in, people often come in and don't really know what it is." In retrospect, I should have asked her for her spiel anyway because it would be fascinating to see how she defines it. But, no. I said "oh, I have gone down a deep rabbit hole of research" and then listed out a bunch of sources I've found particularly helpful. And then I laughed and told her I had a printout for HER just in case, guess it can continue being a bookmark! 

It was a good appointment, mostly evaluation for baseline which is boring, but I left feeling pretty good about it. AND, she never even commented on the sad story my medical history reveals... starting with the fruitless exploratory pelvic laparoscopy in 1999 and then that clump from 2010-2015, followed by the melon baller procedure and the subsequent hysterectomy. I think every time that's in there, someone has to say something, even if it's a relatively benign, "oh, I'm so sorry." It wasn't relevant to what we were doing PT for, and it didn't come up. It feels like a shift. 

I wish there was some magical thing that could hold your medical history and update it so you could just link to it or print it and be like HERE. (We're getting closer, I don't have to do it as much for providers within this one university system, because the portal holds EVERYTHING. But not everyone is included. Boo.) Medical paperwork used to send me into an absolute spiral. In a way I relived those 5 particularly difficult years with each thing I wrote down. But with the clumping and not cataloging all the fertility-related things and the passage of time... It was annoying, but didn't trigger my deep sadness. I wish I could tell my younger self that these days would come, where some of the grief bombs of yore are deactivated.

Breakfast at a Small Inn Can Be Tricky

We just got back from our summer vacation, which was 4 nights in Boothbay Harbor, Maine bookended by a night in Grafton, VT to break up the drive to and from. 

Grafton is a big inn -- there are multiple buildings, and then the Barn for eating dinner (and enjoying live music) and the breakfast dining area for the included Vermont Country Breakfast. There, you eat at your own table, as if you were in a restaurant. People kind of keep to themselves unless they've come with family or friends. We chitchat with the staff, some of whom we've seen for the 17 or so years we've been going there. It's friendly, but not an overly social breakfast experience. 

In Boothbay, we stay at an inn that is an old sea captain's house, right at the head of the harbor. There are 5 total rooms. Breakfast is also included, but it's served in a traditional house dining room. You can choose to eat on the deck or in the little sunroom, or you can sit at the table with complete strangers. 

We usually sit at the table with complete strangers. It is a crapshoot. Some years it is painfully child-focused -- often the kids aren't there, but people are talking about their kids, or grandkids, and assuming everyone is a parent. Last year was the first year nobody asked us if we had kids. It was weird, but honestly...welcome. 

You can also end up sitting with people who utterly monopolize the conversation. Last year there was a couple that talked a blue streak, loudly, and didn't let anyone else get a word in edgewise. There were other people we were interested in knowing more about, but they didn't have a chance. We tried to figure out how to eat at a different time than them, because it was not the most relaxing way to start the day. (The big fear is: are we those people??? Are we unaware and we are just as bad and that's why it's so annoying? Jeez I hope not!)

So this year, we came down the first day and there was a guy sitting by himself who was there for a wedding, and we chatted before he took off to go kayaking before leaving. We were sitting alone when a family came down with two kids, a 2-ish year old and a 5-ish year old. Honestly, my first reaction was "oh jeez, here we go." BUT. 

They were the most delightful family ever. They were traveling for the mom's 40th birthday, and they'd never been to Maine before. The kids were cute, and when they were squirrelly, they were held accountable in a way that this teacher wishes were more universal (firm but loving, clear consequences, clear boundaries). THERE WERE NO DEVICES TO BE SEEN. It is so disheartening to see how many kids are already addicted to devices well before school, and families that go out to dinner and EVERYONE is on their phone. Or the littles are watching shows on the iPad full volume, no regard for other people in the restaurant. Gosh I sound like a crochety old lady! 

And, the parents talked about all kinds of things! We had a lovely conversation, gave some recommendations of things to do, and off they went. Not once did they ask if we had kids. 

We saw them off and on throughout the day, and then we actually got to eat breakfast with them all of the 4 mornings. On the last day, they asked if we had any nieces or nephews. WHAT? What an interesting way to ask! We don't, not little ones, but it almost took us off guard. Never did they ask about kids. 

So now we wonder, do we give off "no-kids" vibes? Do we just look older and so it's not as relevant? I'm going to say that's not the case because of how rampant talk of grandchildren is. I'm so much more aware of that as I inch my way towards that demographic since I'm out of "childbearing years." My dad was actually saying that when he is talking with people, they just assume everyone is a grandparent, and that bothers him. I guess it doesn't ever let up entirely. 

We were sad when this family left (the same day that we did). They seemed genuinely sad, too -- lots of waving and goodbyes and I almost fell out of the hammock while turning to say goodbye as they got into their car to leave. 

We made sure to tell them how lovely we found them, and I actually said "You guys are incredible parents. There is hope for the future!" We meant it. 

So while breakfast is a crapshoot when staying at a small inn, this time we won all the way around. And of course, the innkeepers were amazing! Bayside Inn in Boothbay for the win. 

On Nests and "Forever Homes"

My best friend came for a brief but always delightful visit this weekend. We were celebrating her 50th birthday, which was earlier in July. 

I have known her since we were 4, but we didn't truly become best friends until we were around 15, despite walking to school together, taking the bus together, and being in Girl Scouts together. Something clicked in high school and we've just done life together ever since. 

Well, sort of. We were on parallel paths of sorts -- we did college differently because she had long-term Lyme disease which was devasting on her body. Then my college graduation party resulted in her meeting her future husband and father of her children. I got married first, but it was a disaster. Then she got married the year before my marriage (thankfully) fell completely apart. I got divorced, she had babies. I met Bryce, who met her first baby on one of our first trips to visit together. She left teaching 3rd grade when she had her son, right when I started my teaching life (definitely NOT 3rd grade). When she had her second baby, I proposed to Bryce. I got married again, to the wonderful man I share my life with now, and we hit infertility roadblocks. She had her third child as we started realizing I'd never successfully be pregnant and give birth (but without explanation, which would come way later). We made it through her full house of tinies, where phone conversations were 2 minutes in the bathroom before someone started howling or needed attention. We made it through my realization that I would never have a life even remotely like hers. 

And now, her two oldest have graduated high school. One is going back for sophomore year at a college near me in August, the other is going off to freshman year in Southern California. The youngest is going into her sophomore year of high school. My best friend has an emptying nest. 

But now, we're both 50, and we're literally growing old together. We played a bunch of games of Memory, because she wanted to check to see if she was degenerating (as her lovely daughter suggested when playing at home, ahhh supple and snarky 15 year old brain...). We used to play Memory all the time at sleepovers, and I have a bunch of "grown-up" Memory games featuring birds, and flowers, and movies, and Acadia National Park scenes, and sharks. I love a good Memory game. We were very well matched, which was both comforting and made us wonder if we just have the same brain fog, ha. Her hair is completely grey/silver/white, and mine is largely silver at the temples with my purple highlights. It's not nearly as grey as hers overall, but as it marches towards that, I'll let it shine in its silver glory. (Until then, purple!)

We asked her what she was planning to do with her kids' bedrooms -- leave them as is for them? repurpose any? Wait until after college? Move? She has not-so-slowly turned her house into a bit of a cottagey farm garden wonderland. She has chickens and call ducks. She has vegetables and flowers. She has the greenest green thumb I've ever seen. 

Some containers

Front gardens with smoky sky

Looking out at a cute but naughty puppy from inside the veggie garden

I don't think she's planning to move. And then she asked if we were in our "Forever House." Hmmmm. I don't think so? I love the house itself. I don't love the land (that's the only thing I miss about the old house we left, was the amazing soil and all my gardens. I have NOT been able to recreate that here. I also feel like as I get older, maybe not as many stairs would be wise. I am still scared of the elevator since I got stuck in it a couple years ago! (The house has some accessible features.)

Then Bryce and I talked about nests. My best friend is going to be dealing with the empty nest phenomenon, and our nest is just perpetually empty in the traditional sense. We moved out of a house that felt like a big empty space, devoid of all the dreams we'd envisioned for its future. We moved into a house that fit our life now, and so it never held ghosts of family holidays or beautiful chaos like my friend hid from occasionally so we could have "adult conversation." We don't have that contrast of movement and loudness and young people everywhere to... quiet. But we do have a house that fits our life. I am so very grateful that it became available at just the right time, because the thought of staying in the other house hurts my heart a bit and feels claustrophobic. 

I don't know what the future holds. I would love if someday my best friend and I could be neighbors, like we were growing up...but that's highly unlikely. I would love to find a house (or build a house) that is like this one but with a different layout and smaller, more manageable for when we aren't as physically able. Or maybe having all these stairs will help keep our muscles from atrophying! Or, maybe the world will look very different by the time we get to retirement (which is 61-62 for me and pretty much whenever Bryce feels confident in retirement for him). So for now, I enjoy the quiet treehouse that we have and how it can be a lovely brief respite for my friend, away from her changing nest. 

The Power of A Diagnosis

I have had to explain to people (friends, family) what Hypermobile Ehler-Danlos Syndrome (hEDS) is since receiving this diagnosis from a geneticist earlier in July. I mean, it's a lot of syllables. I am having a hard time succinctly pulling together what it means to have this connective tissue disorder (truth is, I still am not 100% certain I fully understand what connective tissue IS), which has a multi-system impact. What I can explain is this: 

This diagnosis is not something new. This diagnosis EXPLAINS what has always been there, literally since birth. It takes all these seemingly disparate data points and pulls them together into Ahhhh, this is what's going on!

Having a diagnosis puts a name to all the weirdness of my body. And then allows me to find support and figure out what is going to help me deal with this. 

The last time I got a diagnosis that made everything make sense was ADHD. It is another set of letters that explain what's hard for me, what's uncomfortable for me, and some things that are actually awesome that come from the same thing. Part of the relief of that diagnosis was discovering that things that made me "weird" and awkward and things that I (or others) saw as personality flaws were actually due to a difference in how my brain is wired. It has been game-changing to tweak things and figure out what works for me to pay attention to stuff, to let people know I need time to process before I can respond and so when I incessantly say "what?" and then get mad because it's not that I didn't hear you, it's that I needed a hot minute to let it sink in. Communicating what I need or why I do certain things works surprisingly well at work and at home and the places in between. Finding tools that work for me for organization (okay, continuously trying different things and SOMETIMES landing on something that works for a longer term) helps me to not be a hot mess. I still take responsibility for shitty things I do that are related to ADHD (I am absolutely INCAPABLE of guesstimating how long it takes to get out of the house) -- it's not a get out of jail free card. I'm still working on how to get to things NOT ten minutes late. I'm actually working on a lot. But, having ADHD and people who are trained to help me figure it out and compensate for those weaknesses also means that I'm always learning new tricks and trying new things. For instance, I'm not ordering my big, beautiful school planner with all the pretty pictures on the cover and all the lovely color coded tabs. It did not work. It was a giant, pretty paperweight. I started okay, but it didn't stick. So I got a simpler one that was way cheaper and I'm going to try to make this an actual habit I stick to. Fingers crossed. 

The other diagnosis that explained all the things (and made me a bit mad) was PCOS (now PMOS). I had a doctor when I was in my early twenties say he suspected that I had it, but then was like "you don't have x and x" and then got mad when he realized I shave my bellybutton (extra hair) but didn't consider that was a data point and then offered up the immensely helpful "Some women just have pain." Ew. But PCOS definitely explained why my periods sucked from the start and why "charting my cycle" to hopefully avoid bloody underpants was futile and not a personal failing. (Although it's amazing how the executive functioning piece of ADHD worms its way into lots of areas...) You can chart all you want, but when it's every few months that makes it way less predictable. I am still annoyed that nobody seems to give a shit, medically, about that diagnosis now that I am not reproductively viable in any way. Because it also impacts different systems, not just reproductive. Grrr. 

Huh, the adenomyosis was also interesting... explained so much pain during those horrible periods and also was a painful, postmortem reflection that I likely was not going to be able to carry anyway. (Fun-not-fun fact: hEDS has comorbidity with infertility, especially endometriosis and adenomyosis. Yay!) 

Explanations are helpful. They are helpful for understanding what impacts you medically in your body and brain. It gives you a thing to research and learn more about how your body works (or doesn't). Thank you, ADHD, for giving me hyperfocus to really dive deep (and deeeeep) into things I want to research. I am listening to podcasts (Bendy Bodies is a great one), and watching videos, and reading articles online. I now know that lying on the floor (or a table), which is something I do at the end of the day at school (and sometimes earlier if it's a particularly rough day) has been a way that I deal with overwhelm, but it's also what's called a "gravity break" for hEDS. It helps make everything feel so much less HEAVY. My body hurts at the end of the day. Lying flat is delightful. It explains why even washing dishes makes my back and neck hurt. And why I often go lie on the floor after. 

Anyway, didn't mean for this to be a medical history, more that having a diagnosis is helpful when there's stuff that's not working the way it should. Having a diagnosis makes you feel less crazy for having complaints all the time. NOT having a diagnosis but knowing something isn't right is insanely frustrating. And of course, some diagnoses are ones that come with many more complications and difficult decisions. 

For me at least, I feel a tremendous relief when I know what I'm dealing with. 

Apparently, I Am A Zebra

So, there is apparently a saying in medicine that goes like this: "When you hear hoofbeats behind you, don’t expect to see a zebra." 

It means that most of the time, a person has a common diagnosis, not a rare thing going on. Not everything is a Dr. House situation. (Anybody remember that fabulous medical mystery show?)

Except, the Ehrler-Danlos Society explains that sometimes, you are the zebra. 

I had an appointment with a geneticist this week, from a referral placed by my GP last year, and received a diagnosis of Hypermobile Ehrler-Danlos Syndrome (hEDS). Bryce said, "you're kind of racking up these initials," because... PCOS/PMOS, ADHD, hEDS. Sigh. (I mean, but also MSEd (Master's of Education) and NBCT (National Board Certified Teacher). They're not all maladies! 

What is hEDS? A connective tissue disorder where you are hypermobile -- your joints are loose and bendy and you are prone to injuries, migraines, and a host of other issues because connective tissue is literally EVERYWHERE. 

I have always had what my parents called "tinker toy joints." My joints popped in and out (shoulders and elbows in childhood) all the time. I sprained my ankle SO MANY TIMES in childhood and in adulthood. I basically have an area of the attic storage space that is various orthopedic splints and supports and braces. I was born with a dislocated hip that unfortunately wasn't discovered until I was about 9 months old because medical professionals didn't believe my parents when they said something was wrong...so I ended up with surgery to reset both legs and was in a cast from the waist down with a hole for diapers (good gracious) for a while, followed by braces, followed by what seemed like forever in clunky orthopedic shoes (which now I have "stylish" orthopedic shoes). Behold, little baby Jess in her cast: 

Happy riding the "high chair" like a horse

I have all my various falls and slippages and many many unexplained bruises. (Fun fact: both hEDS and ADHD result in you having poor proprioception, or knowing your place in space. Yay!) And, I had two necessary total knee replacements before age 50, which is apparently not the norm. 

My Pilates instructor and both my in-home PT people after the knee replacements questioned if I had hEDS. I am definitely hypermobile. I am definitely a hyperextender and a "bendy body." I did all these things below. 

Image from https://reenvisionpt.com/heds-and-hsd-and-the-role-of-pt/ compiled from the Ehler Danlos Society.

So now, I get to have unlimited physical therapy, and am thrilled to have it in my chart now because apparently my previous colonoscopy experience where the anesthesia didn't work is not uncommon with people with hEDS! The continuing on despite pleas of "I can feel that, ouch, ouch, argh" is NOT common. Grrr. Thankfully the next place I went was phenomenal. 

I feel a sense of relief, because there are so many things that can be explained through hEDS, and MCAS, mast cell activation syndrome. Which is why I am so freaking hivey with such sensitive skin that gets those "exuberant reactions" that I've been plagued with. 

There is a reason for my joint pain. There is a reason I'm klutzy. And, people with hEDS have a high prevalence of ADHD, which was interesting. Not necessarily the other way around, but it was fascinating to see the things that crossed over. 

So there's that. I have new letters. I am a zebra, not a horse. And now I can figure out how to take care of this gumby body as I move through menopause into my older years. 

A Rabbit Hole of Sadness

I started organizing my office, because it's been a week of summer (already!) and that makes me feel productive but in a not-school kind of way. 

Organizing my office led to organizing my books, 

Organizing my books led me to realize I am running out of shelf space (which is insane but true), even though I have literally brought about 30 books into my classroom this year and created the Jess Lending Library of adult books. I had one whole shelf in my office between paperback memoirs and contemporary fiction for my books from my English degree (and Bryce's classics, too). I had done this acrylic riser thing where you can fit two rows on one shelf, which helped with real estate, but I eyed it and was like, "maybe I can put these in the bookshelf upstairs in the hallway." 

The bookshelf upstairs in the hallway is against the side of the brick chimney, which is lovely, and it's an underused space. It has mostly books from our childhoods/adolescence, and... a butt ton of picture books. 

I have a huge stash of picture books for a variety of reasons. Some are treasures from my own childhood, some passed down from my mom's childhood. Some are from when I was a book club editor at Scholastic, and had tons of giveaways which I squirreled away in case I became an elementary school teacher, or, you know, had kids of my own. Some are books I bought for our mythical future children in times of hope, and also books I bought because they were pretty and informative (like The Secret Pool, a picture book about vernal pools, temporary habitats for early spring critters, which I kept). 

And then, there are the ones that still have the power to gut-punch me. 

These were gifted to us at our shower, and have beautiful book plates in them with notes from attendees to "Baby T." I have given away all of the board books, but I still have picture books that I couldn't bear to get rid of. Yet. 

But, it's time. It makes zero sense for these books to sit on a shelf, unused, when they could be read with and by an actual child. I need the space for books that fit our life now, and I'm ready to let them go. 

Of course, as I went through them I sobbed and felt the loss acutely. 

I read exactly one book plate and then decided that was just self-flagellation. I'd read them before, I didn't need to revisit that part of things. I could feel all the love and hope and support from everyone who gave books to us, and the intentions infused in the ones I bought myself, without reading the words from that time. It was overwhelming just looking at the covers. 

They brought to the forefront a reminder of an alternate life, a ghost life that never fleshed out. I felt it viscerally. Not because I want that life or am unhappy with my life now, but because of all the promise those books represented, and the heartbreak of a dream unrealized. 

I am giving the books to my friend who is also my hair lady (responsible for my fun hair color tapestries!). She has a little girl just the right age to enjoy and grow into these books, which are a mix of Scholastic giveaways and books meant for our phantom child. Bryce went through the stack and had veto power, but only one made it back to our shelf. We still have a whole shelf with picture books and early readers from our childhoods, and books that are special to us for other reasons. 

Even though sitting there, going through those books, ruminating on what was and what could have been and the guilt of so much generosity gone unused sent me down what Bryce dubbed "a rabbit hole of sadness," I can see in my mind this little sprite reading these books, gobbling them up, hopefully becoming an inspired avid reader...and it makes me happy. 

The upstairs shelf now.

Summer

It's here, summer is here! Not just calendar summer, but school's-out-for-summer summer! 

This year was a doozy. It was also awesome in many ways, and I absolutely loved my kids (even the ones who had anger issues and personal space issues, I end up loving them extra). I will be glad to see the every-other-period schedule go the way of the dodo. Rushing from classroom to classroom, debriefing and prebriefing with co-teachers, managing different grades, walking around with my fruit-yogurt-granola parfait for hours because there's no time to eat... I will be glad to see that go. Funny thing is, I'm teaching almost the exact same thing next year -- just different schedule and different caseload. Still 7th special class, 8th co-taught social studies, and the only difference is instead of Resource Room with complex kids, I have a newly created Study Skills class with supposedly less complex kids (although it would appear that is a bit of an illusion). We shall see what that looks like...

I ended the year with health issues...made it THE ENTIRE TIME without a respiratory infection, and then come June I got hit hard with an asthma exacerbation. I had a little cold before, like a sinus-y snotty upper respiratory thing, but then it went into my lungs and pollen added an extra kick and I ended up out of school for 4 days and on multiple rounds of steroids and nebulizing. I missed the 8th grade beach party, I missed the Color Run (aw, shucks, darn it...haha). I missed precious last days with my kids, although I came back with 5 left. It was very scary -- I went to urgent care twice and the second time they asked me if I've ever been intubated for my asthma before (um...NO! WTF?) and was given a Medrol 80 mg shot in my arm. They said it would be like a flu shot...except it BURNED all the way down my arm. So just know, that's apparently normal if you ever have to get one. 

I made my memories posters for my 7th grade special class friends, all TWO of them that we had left by the end of the year. They hated each other, so I made sure not to put pictures of the other on their posters. They were completely customized! Lots of goofy things we drew on the board, inside jokes such as George Washington's horse, Nelson, and favorite memes. Then for my resource room/caseload, I made cards with pictures and images that meant something to them and wrote them a little message of love, encouragement, and major I'll Miss Yous. I love doing this, because I have the projects in my Canva projects forever, and the kids just light up. 

I love that I live in this cyclical world where we have 10 months of intense time together and then it ends, just to begin all new in the fall. (Or in next year's case, August, since the school year keeps going longer and longer and starting earlier and earlier.)

And summer...summer is for rejuvenating. For recuperating. For some deep rest needed after the marathon that is the school year. This year I really felt that my brain could reach a capacity where I had nothing left at the end of the day and needed to just veg. I found that my reading slowed way down during the week and then picked up on the weekends. This year was difficult for work-life balance, but I survived it. 

And now, this is nearing the end of Week One of summer vacation (out of nine). The word for this week is RECONSTITUTE. I have no goals. I am just letting myself be a puddle (on the floor, on the couch, on the deck, on the futon, in bed). I nap when I want to. I'm reading. I'm moving my body. I am absolutely not trying to accomplish ANYTHING. 

This is a mistake I've made before, where I make goals for the summer and track accomplishments and then end up...not quite as rested, not quite as separated from work. I've seen a lot of reels lately with teachers talking about the need to totally let go for a week, and then decide not what you want to do first, but what you want LESS of, and what you want MORE of. To balance it out. I have had the urge a few times this week to just check something real quick about school...and I SQUASHED IT. No. I am not doing anything this week. I like to keep July as work-free as possible and then spend August prepping, but I think this year after this week I might do a few things in July because August is just so short. And that way I won't be dreading August as much because I'm sprinkling things about instead of making August just "one long Sunday night" like the memes I've seen that I love (and hate). 

So, happy summer! I can feel my brain coming back to life.