The Power Of Knowing

When I found out that I had Celiac Disease, it was a relief. I had experienced what can only be described as a terribly violent stomach for YEARS. I had developed other nasty side effects, and when I had a name for what was going on, it was... amazing. Sure, I had to stop eating gluten, but that was a small price to pay to feel so much better. (And, honestly, gluten free options are so much tastier now, although still half the size and twice the price, grrr.)

Going through fertility treatments, I finally got an answer to my horrifically painful and irregular periods. I had been on the Pill since I was 18, which had helped with some of it, but throughout adolescence I was constantly having problems with bleeding through my pants, not knowing when my period would come (because it wasn't 28 or 30 days, it was at times as many as 180), horrific cramps and bloating. I felt like a freak. I was embarrassed that I couldn't handle this thing that happened to literally everyone with a uterus and ovaries. I was misunderstood by doctors and my family, who didn't have a history of irregular periods. So to find out that I had PCOS (polycystic ovarian syndrome) and that everything that had happened had a name and a reason, it was a relief. I even found out that my need to wax my Wolverine chops and my ever-existent-despite-running-track lower belly pooch were related to this disorder that unfortunately has lifelong health implications. 

So imagine my surprise when I realized, at FORTY-SEVEN, that so many things about myself that I struggle with and have struggled with throughout my ENTIRE LIFE -- things I thought made me weird, and messy, and annoying, and spacey (worse when others saw me that way) -- were actually... ADHD. 

How did this happen? 

Well, I was sitting in the living room a little over a week ago, messing around with my phone, when I saw a reel on Facebook. It was by Cherry ADHD and titled "8 Weird Things I Do as a Woman With ADHD." I'm linking it here, but in case you don't wish to visit the book of face, here they are: 

Un-numbered Intro: walking into things OMG all the bruises all the time. Furniture, doorknobs, cabinet pulls, missing the doorway partway, walls...

1)  getting super irritated when I'm interrupted Yes, always, although I am also likely to interrupt you all the time when I have a thought pop up.

2) searching for things that I've just had or that are right in front of me (or even in my hands!) ALL the time. I've even tried to open a house lock with a car key, when car keys existed. I have accused Bryce of hiding something on me that was literally in my hands. I can lose pretty much anything.

3) often sighing and randomly singing words and sentences Okay, Bryce is constantly calling me out for sighing audibly more than "normal." And I live life like I'm in a freaking musical. I sing EVERYTHING. I also have this weird tic where I sing a little snippet of something that sounds like a mix of "nana nana nana nana nana nana nana nana BATMAN" and the theme from either James Bond or Mission Impossible. No words, just a weird scat-like humming that happens most frequently at school. I'm sure it's not annoying at all.

4) accidentally walking around with t-rex arms THIS was the one that made me go hmmmmm the most. I did not know this was a thing. But I do it and then see the evidence in photos or videos and am like, WHAT'S UP WITH MY ARMS? To see it on someone else? Mind. blown.

5) feeling restless but tired Always. I can be exhausted and wound up at the same time. I am super tired from all the racing my thoughts do in my head.

6) enjoying playing with sensory toys a little too much Ummmm, yes. I got a PopSocket for my phone and I cannot stop playing with it. Pop out, pop in. Pop out, pop in. Also I have a fidget bin in my classroom and I love messing with the pop-its and the connected flippy cube thingies, and I love those tiny magnetic balls you can make shapes with, that, incidentally, a student introduced me to. A student who stayed after school with me on Fridays saw that bin and was like "wait, you have these? On purpose? FOR STUDENTS? That's SO COOL!" Huh. 

7) feeling super guilty and stuck when I'm sitting down and not doing anything OMG yes. I am horrible at "laying low." Like, cannot do it unless I end up taking a nap. Which in surgery recovery is a necessary daily thing but I wait until I have begun system shut down to do it. 

8) forgetting I have friends for periods of time I can definitely self-isolate.

So, it was weird. But again, the weirdest was the T-Rex arms, because see below in stills from my National Board renewal video: 

Oh. My. GAWD, what IS that? I had no idea it was a sign of something.

So what happened next was I showed that reel to Bryce, and he was like, HMMMMM. Truth be told, he's said for a couple of years, "Are you SURE you don't have ADHD?" and I thought he was just being "funny." But also this year I had a high percentage of students with ADHD and one said, "Mrs. T, you know you act an awful lot like YOU have ADHD." and I laughed it off, because I'D KNOW THAT BY NOW IF I DID, RIGHT? I mean, I often call myself a "hot mess express," but ADHD? No way. 

Bryce brought up a video that led me to a channel called How to ADHD, which I cannot recommend enough. The particular video that we watched though was "ADHD In Women," and by the time we finished watching it I was ugly-crying. 

EVERYTHING rang true. At one point, I turned to Bryce and sobbed, "You're the only reason I don't live in a trash heap, aren't you?" Yup. Unchecked, I am chaos. My desk at work is evidence of this. My desk at home is evidence. The bags of mail that I collect and then hide because I'll "take care of it later" are evidence. I hate filing. I have a photo of my inbox in my office at my first job in publishing, and it is a stack of paperwork about 2.5 feet high, with a large green bowl on top of it for some reason. In high school, I shoved laundry in my closet and just kept pulling out new clothes and would wait to do laundry, and at one point there was (ew) MOLD growing on the floor under my pile of unwashed laundry. I am deeply ashamed of these things. It takes a LOT of effort to appear physically organized, and I am kept accountable by Bryce. I mean, "I promise to make pile management a priority" is verbatim IN MY WEDDING VOWS. I am very mentally organized when it comes to things I am interested in. But, I flit from thing to thing. And physical organization? I need major systems. 

I sent my therapist the videos (because I went down a major rabbit hole, and then Bryce was like "you're hyperfocusing on your ADHD," and then I realized that OMG, how I approached infertility and adoption was 100% hyperfocusing. OMG it's EVERYWHERE). She called me and asked me to explain, and I basically had to admit that I had compartmentalized her. I had shared all this stuff about my grief and trauma and PTSD from infertility, and adoption, and my first marriage, and some stress management, but I had left a lot of these things out. Because I hide it all. After a long conversation where I talked about the things that go with the videos and how much I had hidden, she was like, Oh yes. You most definitely have this. So she gave me a referral for an evaluation. 

Bryce was wonderful, and was like, "I love you, and I don't want you to think that you have to change anything about who you are!" and then I started crying again and was like, "but keeping everything together and pretending to be a more typical human that doesn't have to compensate for all these things is FUCKING EXHAUSTING." 

And it's true. I am tired all the time, because things that come naturally to some people are insanely hard for me. I stay at work late in part because when everyone is gone, I am much more able to focus in on what I need to do. There are fewer distractions. Fridays I've typically stayed until 5:30, and the custodial staff always gives me hard time and rib me about "don't you have something better to do? Doesn't your husband miss you?" and the answer is, "I get SO much done when everyone is gone." And now I know why. 

Here's one last video that I watched that made me go AHA: 

There's a lot to unpack for myself here. But also, it's a relief. All the things that I felt shame and that caused me a great deal of anxiety are because my brain is different. Not better, not worse, just different. Now I can learn more about how my special brain works, and why the systems I've somewhat unknowingly set up for myself work for me, and what other systems I can utilize to make my life easier. I am interested in trying medication because I wonder if it will be like putting my glasses on for the first time, but for now I can search for more tools for my toolbox. 

Lastly,  I recently had a phone chat with a friend I've known since college who lives out of state, and I shared this revelation with her. I said, "I just figured out I have ADHD!" and her response? 

"OMG, you didn't KNOW? I always thought you KNEW you had ADHD and you just hadn't figured out your medication!" 

We actually had a term for my ability to be really really smart and really really spacey at the same time -- MindChamp. And now, I know that MindChamp is just another word for my ADHD. She even said, "I wish we would just call it that all the time, because maybe it would take some stigma away." 

I am so relieved that I am not deficient. I am not "failing at life," as I say on repeat frequently. Something is not fundamentally wrong with who I am. I am not broken. I have a different brain, and now I can learn how to optimize my strengths and accommodate for my struggles, how to set up systems. I can basically be my own special education teacher. I'm glad I made this discovery, even though it was insanely emotional and tore down the walls I build around the core of myself that is that girl with mold in her closet, now I know. And there's so much power in starting from knowledge, even when it took 47 years to get to this epiphany.

Everything Is a LOT Right Now

Today was a very, very hard day. It was physical AND emotional. I don't know how to make it into a cohesive narrative because my brain is not functioning at even medium capacity (more on that later!), but I am drained and I am sad and I am overwhelmed and I need to let it out. Anxiety sucks, man. 

The Straw:

The knee that I replaced had a previous surgery from 1993, and so I have two scars now -- one beautifully thin but 10" long and vertical that's new, and one thick angled mess that has a skin loop I can put an earring through (don't ask how I figured that out but it cracks me up). I will be able to teach supplementary angles with my knee scars next year. BUT, the old scar has had some swelling around it and extra pain and it really ramped up today. 

I have worked really hard to get the oxy down even further, and had three days where I successfully did 1x/day at night. But this morning it hurt so bad that I had to take one, and that felt like a small failure but it was a tiny price to pay for relief. 

I had a PT appointment today (still in-home, still on my walker, still dealing with instability and "buckling" that's preventing me from using a cane), and I texted her and let her know that I was in a lot of pain and it was that same spot that has been bothering me since Week One, and that I did bring it up with the surgeon but he didn't seem concerned but what if it was some kind of soft tissue damage that needed surgical repair, or some kind of weird tumor like a traveling vestigial twin (all hair and teeth) showing up at exactly the wrong time? What if it is a sign I'm actually dying? 

You can see the spiraling. 

I was sobbing and pretty inconsolable when my physical therapist arrived at 12:30. She checked it out, and translated surgeon-ese to explain that it is probably where the instruments broke through the membrane into the joint capsule (EW EW EW I am so sorry for how gross knees are), and she showed me how to do multiple types of self-massage and desensitize my overfiring nerves. She explained that all of our quad work that needs to happen to get me cane-ready and more stable is aggravating that spot. And, she said that if it will make me feel better to see the doctor to get peace of mind I definitely could, but just hearing anatomical information in ways I could comprehend made me feel a bit calmer. 

Medical PTSD:

But just a bit, because as I explained how much I hurt, I then proceeded to verbal-vomit a whole bunch of trauma into this lovely lady's unsuspecting ears. I explained that I worry about tiny percentage things because I am a tiny percentage kind of person and my medical history can be summed up as "A Series of Unfortunate Events" to borrow from Lemony Snicket (google it, great books). I sobbed as I spilled tons of medical history tea and listed the ectopic pregnancy from IVF (where they PUT the EMBRYO in my UTERUS but it had ill-fated WANDERLUST), the hyperstimulation/OHSS that resulted in a paracentesis procedure to tap my abdomen of an insane amount of fluid, difficulties from the hysterectomy because I had undiagnosed adenomyosis (which was also why my endomyometrial resection surgery in 2016 failed spectacularly in 2019, which led to a hysterectomy ANYWAY). Some of my fears are anxiety, but also... I have a bit of a track record. 

Loneliness and Feeling Dependent: 

I have also been feeling pretty isolated. I have phone calls and texting and am wayyy active on the Facebook, but there's been a lot going on for all my humans (end of school year crazy! death in the family! going on trips for fun! Etc!) and so I haven't had the chance to talk with or visit with people I would have seen daily at school. I have had visitors, wonderful visitors who have made my day when they come, and so many generous humans have come bearing food and coffee and flowers and things to occupy me like puzzles and magazines. But I can only handle about 1-2 hours of visiting at a time, and there are days on end where no one comes (because life is busy and I am not the center of all things). It's been a rough transition to go from the insanity of school existence where you have constant interaction and come home and just crave silence and alone time, to absolute silence and alone time and not a lot of change in scenery. Maybe if I could get out on my own volition that would be different, but my biggest solo adventure has been going with my walker to the mailbox at the end of the driveway, and I typically need a nap after that. Sigh. I have absolutely loved and appreciated any and all visits, but there's a difference between choosing to lay low and have solitude and having that being the only option unless someone comes to the house. (And of course Bryce, who is wonderful and amazing, but he has things he has to do too and he can't be my only source of social entertainment.)

I am so done with being dependent for every little thing. I still cannot SHOWER by myself. I need help in and out so I don't slip and fall. I'm good on the shower chair once I'm situated, but having to schedule showers around Bryce's work schedule is less than ideal. And because I have curly hair, nighttime showers aren't great -- my hair takes forever to dry and then I get some stretched-out curls, some right-angle curls, some really tight curls, and then a load a frizz to boot. I don't mean to be vain, but I don't want to look like a freak even though I'm not so public-facing. I worry that Bryce is going to resent me for all the care I require and keep requiring far longer than I anticipated. He assures me that he doesn't, but anxiety tells me stories all the time about how I am a burden and he's just being nice and he can't wait to get out of the house and away from my sorry ass. I want to be able to drive and I want to be able to do things for myself and that's damn near impossible with the walker still in play. When I try to do more I pay for it in pain and exhaustion, which is part of healing and recovery, but it's frustrating. 

Pitfalls of the Book of Face:

I mentioned that I've been on Facebook more lately, after a few months where I really tried to not do a whole lot. I dislike social media for the harm it does and the insincerity and misuse of the phrase "best self" that gets put out there constantly. It is often a veneer of reality, not actual reality. If comparison is the thief of joy, then Facebook is an Oceans Eleven, an Italian Job, a Bullet Train. And if you feel like you're missing out on experiences because you're stuck at home, then GOOD GOD it can feel terrible. Upside, it is allowing me a way to interact with other humans, even if it is superficial. Downside, I end up beating myself up because it seems that everyone has a knee replacement story and I'm getting a lot of "wow, I never had that kind of pain" or "why is your recovery so crappy, [insert person]'s went so much faster/less complicated/less painful" and then I feel like WHY AM I SO BROKEN? What's WRONG with me? It's yucky, to say the least. 

New Discoveries About My Identity: 

I also made a discovery that I am in the process of solidifying officially that explains SO MUCH of who I am and how I operate, and why I have had certain experiences that weren't the best, going back to childhood. It is INCREDIBLE to me that I am 47 years old and only just discovering this thing about myself. I always thought it was just me being weird, annoying, and physically disorganized, and that it was chalked up to anxiety alone.  So, finally getting medication for that in 2017 was good, but didn't "fix" all the things. It turns out this is because I also have ADHD Inattentive Type. So much of it goes back to how most research is done on boys and men, and women present differently. Because of societal pressures and "good girl" nonsense, we are trained to hide our true selves, so it's harder to see the struggle. I have been hiding who I am for a very long time. I have a lot of deep-seated shame about pieces of myself that have always been difficult and now I know why. I am going down a deep rabbit hole but that is actually causing me more anxiety, but it's good because I'm realizing how much I've compensated and how many things are systems I've created to help myself and how many tools can help me now that I know... But it's overwhelming.  More on this later, it deserves its own post, but it's fun to realize that one reason why I love teaching the kids I teach is because... I'M ONE OF THEM.  It's revelatory and exciting and exhausting and unearthing a lot of shame and trauma. 

Allllll of this piled up and built up until today, I dissolved into a sobbing pile of goo in every kind of pain imaginable. It reminded me of 2017 when I hit my limit with adoption. That was not a particularly awesome time.

Physical Therapists Rule the World:

What a gift though, to have my PT lady come today. She was amazing. She helped me with a tapping thing to calm my nervous system so I could communicate. She validated my feelings but also gave me a clearly-communicated, rational explanation and tools to help my physical pain. But better than that, she helped me with some anxiety strategies. The tapping was amazing and I know there's a name for that but truly, what a deceptively simple way to exit a spiral (but with repetition, once didn't cut it). Then she introduced me to Dan Harris and Ten Percent Happier.  I downloaded the free app (and then after doing some of the guided meditations I signed up for a membership, because ALL OR NOTHING, that's ME and my ADHD), and WOW. Everybody says how amazing meditation is. I have sucked ass at it. Every time I try I'm like "woo hooo, another self-care thing I fail at! Yayyy" I can't quiet my mind. The racing doesn't stop. I just feel like a failure, which is less than relaxing. BUT THIS IS DIFFERENT. More later, but wow. I think I may actually be able to become someone who meditates! And it is a really great approach to calming anxiety and not vanquishing the beast but inviting it in, albeit tamed. (So reminds me of my favorite anxiety book so far, First We Make the Beast Beautiful by Sarah Wilson.) There's a book, too, which I will read at some point when I'm not so totally overwhelmed. 

My physical therapist was an Anxiety Angel. She gave me a hug, a real one. She recommended I watch Bridgerton, which I haven't yet (yes I know, last person ever not to watch it), because it's delicious candy in every possible way. 

She left and I felt so. much. better. But also still horrible. So I took a 3 hour nap and then froze some spoons to attempt to de-frog my eyes (nope), and then did Day 1 of two of the series in the Ten Percent App, and felt calmer and like there's hope that I can feel more in the realm of a human-like-substance.

It was a really, really hard day. But it will get better. This is temporary. And I am so, so grateful for all the support during this recovery and while I struggle through this additional spirally gooey moment. I am going to be a HORDE of butterflies with all this messy time in transformational goo. 

The Right Pillow for the Right Time

Since I've been home recovering from surgery, I've had a bit of a online shopping spree. Nothing crazy, I'm super practical and reasonable even when sucked into Facebook ads and catalogs and BuzzFeed articles about hot deals and amazing organizational finds on Amazon. I really am trying to avoid the place run by the captain of the big blue penis rocket on principle, but sometimes it can't be avoided when homebound. I do click over to Etsy when I think I can find something there instead.

But, a steady stream of packages are arriving. To be fair to myself, it's a lot of comfy pants and wireless bras that really do lift, things for the house to make living in the basement bedroom more cozy and organized, healthcare/cosmetic items (best purchase award in this category goes to CocoFloss -- like having a dental hygienist on demand in your home, amazing!), and gifts for people. 

One of my favorite things to do when I am feeling down and isolated is to buy prizes for other people. But occasionally, I get prizes for us. 

Enter a pillow and blanket that I've been eyeing on the Bas Bleu catalog/website FOREVER. It called to me. It whispered seductively, "You waaaant me. You NEED me. Bring me home, baby." And then it went on sale. 

Behold, the pillow that whispered sweet nothings to me:

And there's a cozy blanket, that is also Lucky's favorite new thing:

Isn't it perfect? I love everything about it. I am generally against pillows with words on them unless they go with a seasonal holiday, but this is one of two exceptions. 

Do you remember the other best pillow ever? Another right pillow at exactly the right time? From, oh, SIX YEARS AGO almost exactly? 

I remember buying that pillow and CACKLING with utter glee, at a time when glee was in short supply. An except from my 2017 post about it on my previous blog, My Path to Mommyhood

I bought myself a fabulous new throw pillow for our new couch, for which I splurged on expedited shipping to get it in time for my birthday tomorrow and it makes me laugh maniacally and do a happy dance when I see it.

Is that not the best thing you've ever seen?

I saw it in my head the other day, and then googled it AND THERE IT WAS. In real life. Purchase-able even! So much happiness in a little square. It's like I finally manifested something, ha HA ha ha.

I can get behind pillows with words on them if they swear and are strangely appropriate for life at the time.

If you want to read the whole post, it's here. I reread it and holy crap it brought me back to that time where we had just made our decision to walk away from adoption and resolve without parenting. If ever anyone wondered exactly why we made that decision, THIS POST ANSWERS THAT QUESTION. and, it introduces what was once my most favorite pillow. 

The time for that pillow is gone though, and it has been sitting in my chaise lounge storage compartment for years. Until today. 

In the spirit of decluttering, Bryce has a "something in, something out" philosophy. It made total sense to bring this new pillow in and to give away the pillow which served its purpose and lived a rich life, until it lay dormant inside seasonal pillow storage, hidden away. 

Until today. 

A friend came to visit who is going through a rough time. Understatement -- she is in her chrysalis stage, utter goo as her life is being dismantled. Different situation than mine was, but similar in that the life she thought she had, the future she had imagined, has been cruelly ripped out from under her and she is feeling unmoored, sitting in a swamp of disbelief and horrific, painful limbo. 

SHE NEEDED THIS PILLOW. So, I sent her home with it. She may have even cackled with glee.

If you are in a place of transformation not of your choosing, and you logically know it will get better but are in that space where you just feel utterly disassembled, a Fuck. This. Shit. pillow is a small win. 

I am glad to give it a new home. I am glad it can be passed along in times of need, like magical traveling pants. And I wish I could teleport back to the me that wrote that raw post oozing with grief and show her the Ghost of Pillow Future, the fulfillment of the promise that sounds so trite, so pat, so hollow when you are hurting and in that transformational goo: "It gets better." 

Because it really, really can. I can't promise it will be perfect, but it is possible to take upending grief and sorrow and rebuild a different life you love. 

The new pillow has spoken.

Up and Down (but mostly up)

It is amazing to me that I am almost three weeks out from my total knee replacement surgery. It feels like time is passing weirdly. 

I am beyond grateful to have pain management in a good place. I was fully warned that the first four weeks are the worst, but the first two are horrific. TOTALLY ACCURATE. Even more so when the pain meds are mismanaged. Not that I'm bitter... But being on the other side of agony is certainly improving my quality of life. And go figure, now that I have the celebrex (anti-inflammatory) and gabapentin (nerve pain), I'm down to less than a third of the oxy I was on when I came home. I can almost consistently go 9 hours between 5mg doses.

The hematoma from last week has mostly resolved. I am, however, "a sweller." Had a great PT session this morning but have been fighting swelling ever since. Thank goodness for the ice machine. Two steps forward, one step back... But still moving forward!

I am sleeping well finally! Got a body pillow (why did I never have one before???) and that allows me to sleep on my side. Now I can sleep on both sides!

I am enjoying short visits, 90 minutes is about what I can do max and an hour is probably better. I start getting visibly exhausted after a while. I am not cleared to go out and about, picking up a Target order and getting gas/going through the car wash have been about the extent of my exciting adventures. Car rides hurt.

I have to keep in mind that this is the dangerous time -- I feel good enough to do stupid things and overdo it. So for the sake of progress, I have to watch it. Bryce is really good at nudging me to take a nap, or sit down, or go to bed. He's also good at keeping me accountable for good walking -- I can lean funny or overcompensate, which leads to other pain (hey, sciatica!). Usually that means I have to ice. Or take a nap. Or go to bed.

It's been weird to have a lower cognitive load due to the drugs and my body putting power into healing. I only recently have been able to read for longer than 10 minutes. I can do word searches and easy PEOPLE Magazine crosswords, working my way up to other activities. I lose words a lot. I start sentences and then just sort of stall out. It's good to remember this is temporary. I love my brain, and it can be frustrating to have it function differently.

It's good to have a positive attitude but also acknowledge when it's overwhelming. At night sometimes I get weepy and overloaded. It felt like the first two weeks were neverending and I might not survive it. It was so hard to have progress and then BAM! hematoma and forced slowdown. Sometimes at night the pain sort of haunts me -- thanks to the meds, I don't feel it acutely, but it's still there and my body kind of hums or vibrates with it. It's hard to explain. It feels very unsettling.

This is something I have lots of practice with, right? Being in tune with my body in tough times, dealing with disappointment and setbacks and pain. But looking for those bright spots and knowing that it won't always feel this way. And super important: practicing good self care. Letting people do things for me. Enjoying the slow (which I'm notoriously really bad at). I've gotten better at acceptance and letting go. I'm not like, a master of it, but I've definitely grown from all that character-building, painful experience. 

Cheers to a bumpy yet upward trajectory toward healing! 

I got a different view on Saturday after the wildfire smoke cleared! 

Change of scenery = joy 

Eggi loves snuggle time downstairs

Upstairs, Lucky is always on my lap

So cozy! 

Knee Update (and a treatise on pain management failure)

Well, hasn't this been an absolute adventure? First off, my knee is doing really well, despite some recent setbacks (call me the Setback Queen!). It is amazing how the body heals itself. 

And now I tell you about societal failure in three stories. 

Last Friday 6/2

Okay, so I already told you about the whole rigamarole I had to go through to get the proper amount of oxycodone, and how self-advocacy got me what I needed. Well, for the holiday weekend at least. Tuesday after Memorial Day the rest of the partial prescription came in (because of course there was an oxy shortage, and of course they had to split the prescription for 40 pills into 21 on Friday and 19 on Tuesday). So I had 19 5mg pills. At the holiday weekend I was down to 30mg/day, and by Friday 6/2 I was down to 25mg, which is pretty darn good if I do say so myself. But it came with writhing and horrible pain as the day wore on, with afternoons, evenings, and the nighttime devolving into a full-body contracting mess as I waited for my 5-6 hours to pass. 

Friday 6/2 I had the home healthcare PT come at 9, and she was like, "you are KILLING it!" -- I could straighten more than last time, and my bend was already at 76 degrees. GO ME. I had walking exercises and stretching exercises, and I was feeling real good about myself. I did start a new program on that range of motion bike, which added in resistance, and that was hard but I did it anyway. I was a WARRIOR. 

She asked if I had enough medication for the weekend, and I said "oh, I have to call in a refill (read: new prescription, there's no such thing as oxy refills) because I'll run out Saturday." She said, "CALL IT IN RIGHT NOW. BEFORE NOON. Don't mess around with that, you're doing great but you don't want to get stuck without." 

So I did. I called the orthopedic office, talked to the secretary, and she referred me to their pharmacy refill mailbox, where I left the required detailed message. And then...I waited. By a bit before 1:00 I was weirded out I'd heard nothing, so I called the pharmacy and asked if a prescription had been called in for me. They said no. I asked if they could call, and they said, "MA'AM, we cannot call about your narcotic prescription for you. You have to do that. It is the law." Oh, okay, I get it. So I called again. 

And again. 

And again. 

Every single line was busy. Bryce called too, busy, busy, busy. Something was wrong. I called the nurse hotline for home healthcare and explained what was happening, and she was like, "oh no... there's nothing I can do for you. There should be a backup. It sounds like the phones are down, keep trying!" 


Finally, at 2:00, Bryce said, "THAT'S IT, WE'RE DRIVING THERE." So we loaded into the car and went to the medical campus. On the way, he suggested I call my primary care doctor. I was hesitant, because I didn't want to look like I was doctor-shopping. Even though I was just trying to get the medication I needed to be reasonably controlled after an insanely traumatic surgery. I called and talked with the secretary, and she said that she'd talk with the doctor and then have him call me. 

When we got to the office, there were electric company trucks everywhere. Bryce went in and there were two secretaries sitting in the dark. Yup, power outage. Phones and computer systems down, down, down. Bryce said, "My wife had a total knee replacement last week, and she's out of pain medication. What can you do?" Apparently their faces went gray and they were like, "Oh no. We can't do paper prescriptions anymore, it's illegal, so there's literally nothing we can do. Try your primary care doctor?"

I was in full blown anxiety work up at this point, and in pain, and it was hard to tell what was feeding what. 

On the way home, my primary care doctor called back. He was like, "you had a refill on Tuesday though. That's three days ago." I had to explain that the refill was actually the rest of a partial fill of ONE prescription. Then he said, "But you've had 65 pills in less than 2 weeks." I lost it. I started crying and wailed, "YES, because when you have a total knee replacement, they use POWER TOOLS on your leg, they use HAMMERS and SAWS and DRILLS and I left the hospital taking 50-60mg per day and I'm down to 25mg per day, which is AMAZING, and I am in SO MUCH PAIN, and I am taking so much less than most people at this stage! It hasn't even been TWO WEEKS! It's been TEN DAYS!" Bryce put his hand on my thigh and whispered "careful, don't make it sound like you're begging." DO YOU KNOW HOW FUCKED UP THAT IS? The doctor did not at ALL want to do it, but he did an "emergency" prescription of 15 pills, which would get me through to Monday or early Tuesday until my prescription came through. I doubt it, but I sincerely hope he got on YouTube and watched a video of a knee replacement for context. 

The rest of the way home I sobbed and sobbed. "WHY DO THEY THINK I'M TRYING TO GAME THE SYSTEM? THEY THINK I'M A SMACK FIEND! I'm on some sort of WATCH LIST now I bet! What the hell!" I was exhausted and full of pain and sadness and frustration. We got home and Bryce took my phone, said he'd answer any important phone calls, and was like GO TO SLEEP. That was a lot. 

Having to fight for basic pain maintenance has been awful. Also, what the hell? You don't want me on oxy? GIVE ME OTHER MEDS. I asked in the hospital about Gabapentin and Celebrex, and I actually HAD Celebrex in my rotation in the hospital, but they didn't send me home with any (non-narcotic, non-stomach irritating anti-inflammatory). And they said "everyone's pain medication is different" and sent me home with 25 measly pills. Literally, they cut my leg off and put it back together. They did CIVIL WAR SHIT to me. 

Over the weekend, I was a bit better but noticed more pain and more stiffness, which had Bryce nervous that maybe I was morphing into this mythical tweaker everyone was apparently worried I'd become. My range of motion shortened. I was in horrific pain at night. But I stayed at 25mg of oxy. 

Monday 6/5

Again at 9:00, my PT came to the house. She saw me and immediately said, "Oh honey, you have a big old hematoma! Oh no!" She did some massage manipulation and basically validated my pain levels. I had a massive amount of swelling around my knee, on the sides, and down my shin. Everything was super tender. I was at about a 7. and I'd had my morning oxy. 

She was all fired up when I told her about Friday. "This is RIDICULOUS. There is NO REASON you can't have Gabapentin and Celebrex. This is CRIMINAL. They don't want to give the oxy to you, a textbook case of WHY WE HAVE OPIODS because of the severity of your surgery, but they won't give you a cocktail where you can get off the oxy. SO STUPID. Also, honey, I think you might have a blood clot in your knee, so you need to see the doctor's office today. Yup, need to go today. We're not doing any exercises, just measurements and calling your office."

PTs rule the WORLD. 

So we went to the doctor's office (now open with lights on, and oh by the way my voicemail prescription was filled without question on Monday, so I guess if there's no outage the system works pretty smoothly, ugh), and saw the physician's assistant. I was in so much pain, easily a 9, and I couldn't sit, I just did laps with my walker around the halls because it hurt so much. Finally we were seen and he was like, "Oh, this looks okay, just real swollen, but you're only 10 days out. It's not hot, it's warm, so I don't think it's a blood clot." I advocated hard again and was like I WANT IT THOROUGHLY CHECKED and, by the way, can we get me a variety of pain management meds? 

OH HOLY JEEZUM. Just like that, I got all the meds sent to the pharmacy. 

But first, it just happened that my surgeon was in the office. He came and checked it out, made sure there was an x-ray so they could check on the structural integrity (all fine), and explained that the hematoma was just a giant pool of blood where it shouldn't be, but that if I drop down to one baby aspirin per day and take it easy for a couple days, then it should resolve. And of course I could get the Gabapentin and the Celebrex. He did do a test where I had to hang my leg over the edge of the table, and it hurt so bad and I panted like an animal and Bryce got upset and yelled "Don't you think that's ENOUGH! Can't you see she's in PAIN!" which was sweet. GOOD GOD MY REFERENCE POINTS ARE ALL SCREWED UP. 

Tuesday 6/6 (and on)

Oh. my. god. Having a cocktail of meds is a freaking GAME CHANGER. I cannot believe I was at the level of pain I was in for TWELVE FREAKING DAYS before it was under control. The Celebrex and Gabapentin have me down to 15-20mg oxy per day now, and while I'm super loopy and brain farty from the Gabapentin, it's so much better than writhing in pain and exhibiting baby reflexes and being just outright nasty by nighttime because it hurts so much. Good for me, good for Bryce. And it's good to keep Bryce happy because he is an amazing caretaker and I am just so fortunate that if I have to have power tools taken to my leg, he's here helping me move through it. 

I will be calling/writing a letter to the hospital about the failure in sending me home with the right meds, and how awful it is to treat someone who is in tremendous pain after an insanely traumatic surgery like a drug addict scheming for narcotics. I know there's a crisis, but this is WAY overcorrection. I should not have been in so much pain for so long. It was wholly unnecessary and it definitely set me back. Shame on our system. Literally, if you don't want me on all that oxy, give me the right balance of meds to manage the pain so I can do my PT like a rockstar and get myself back in business with my new knee. 

Thank you for coming to my TED Talk. 

A Community Call For Information

Hi friends! 

A friend of mine is experiencing a rare hurdle to fertility treatment after a devastating loss, and she is looking for solidarity. Here is her message:

Very important question, not looking for sympathy here, but instead hoping to find someone who might have a similar experience] I've recently been diagnosed with Autoimmune Progesterone Dermatitis, a rare hypersensitivity to my body's progesterone--this diagnosis came as a result of me having difficulty tolerating fertility treatment. While the doctors discuss how we move forward, I'm hoping to find someone who has experienced what I've been going through. If you know of someone and they are open to connecting, please let me know.

If you have experienced this, or know someone who has, can you comment below and I will send you her contact info? Thank you SO much. There is so much power in community and solidarity.


Pronatalism and Anesthesia

When I had my knee replacement surgery, less than two weeks ago (!), they did not use general anesthesia. They used a spinal and two nerve blocks, and then sedation. The anesthesiologist said, "we'll make you sleepy, like a colonoscopy." I thought of my botched colonoscopy "sedation," stared him in the eye, and said, "oh god no. Make me ASLEEP. I don't want to hear any of the power tools." Because... They use power tools. Much more Home Depot than surgical supply. Drills, saws, mallets, etc. No thank you. I want no part of that auditory feast.

I was way more afraid of the spinal than the nerve blocks, although the opposite proved to be true in reality. The nerve blocks were terrible. There was numbing applied to my skin, but all the threading inside was horrible. So I was an absolute wreck about the spinal. 

The pre-op nurse said, 'it's just like when you have a baby!" That was weird because not everyone gets or chooses spinal anesthesia, but also NOT EVERYONE HAS A DAMN BABY. I said, "oh, well I didn't have one, but if I could have I would have had an epidural!" Ha. Ha. Ha.

Then they came to get my pee, and I heard the tech say through the curtain, "we can't roll her in until we do the pregnancy test." So I yelled, "I can save you some time, I don't have a uterus, had a hysterectomy a few years ago!" Seriously, why isn't that marked on my chart? I feel like I need a name tag for when I go in for x-rays or medical things: HELLO MY NAME IS JESS AND I DON'T HAVE A UTERUS.

I was told one more time when they did the spinal, in the OR, under some loopy looperson medication, that it was just like when you have a baby. ARGH stop it... There are SO MANY PEOPLE who haven't given birth for a zillion reasons, why make it sound like it is the default experience? 

When I woke up after surgery, completely lucid because no general anesthesia, they had that paper screen up to shield me from the horrors of what they'd done to my leg. I am grateful for the lucidity because my strong impulse was to yell, "WHERE'S MY BABY?!?" and then cackle madly, because it looked like every depiction of a C-section EVER. 

Don't worry, I didn't do it. But it would have been hilarious and a little tiny retribution for the insane pronatalist assumptions thrown at me up through that point. 

Mothering Day

I was way too busy with Bryce's PhD graduation and my impending surgery and leave to worry much about Mother's Day. It barely hit my radar this year. Mostly, I experienced mild consternation over ads that insinuated that only moms would love and deserve pajamas. 

Like others, I was impressed by how many companies had opt outs for promotional emails for the holiday. Unfortunately I missed a bunch in my burgeoning Gmail "Promotions" folder, but when cleaning that out while laid up, I was newly, if belatedly, appreciative. 

But. The best thing that happened was a text I received from a friend and coworker, someone I don't know super well but have gotten to know more each year. She is a calming force, a well of empathy. I enjoy her company and we are hysterectomy sisters -- she got hers the year after mine and I made her a "goodbye to your uterus" care package, that had tissue paper that was purposely shades of pink and red. You know. Like a lining. Ha. 

Anyway, she sent me this and I had to share with you because it is just so lovely:

"I am not sure how you feel on Mother's Day Jess. But Happy Mother's Day to you!! ๐ŸŒธ๐ŸŒบ๐ŸŒท๐ŸŒป๐ŸŒน๐Ÿ’๐Ÿ’❤️

Not all "mothers" are biological, and some aren't even female. 

You have had an especially trying year with your kids. But you have been a wonderful second mother to all of those kids. I hope you celebrate today! ❤️❤️

And as I said, I do not know how you feel about this day, but I was thinking about you, and this day, and it is my hope all caregivers who play a central role in assisting with the growing up of children share in knowing that they are appreciated. ❤️❤️"

Ummm... Wow. For the record, she is a mother. And an amazing human. Well done, you. 

I would love to see Mother's Day become Mothering Day.  It could have the definition in her last paragraph. 

Mothering Day: a holiday made more inclusive by honoring and appreciating all caregivers who play a central role in assisting with the growing up of children

Wouldn't that be lovely?