Labeled

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Labels are a weird thing.

When you feel comfortable with yourself, you often don’t see the need for labels. Why label something? Why label anything? But the more you step outside the realm of what’s viewed as “typical,” the more you want to know what you are. If I’m not “normal,” what am I? Or maybe “typical” and “normal” are the wrong words, so let’s use the word “default” instead. Kind of like when you open a video game for the first time, you’re presented with the “default” option for character creation; that’s how life can feel. There’s the “default” option, and then there’s the rest of us, trying to figure out how we fit in, and that’s where labels become important.

A while back, I wrote about two of my labels: “bisexual” and “demisexual.” Both of those deviate from the “default” setting: heterosexual. The first thing most of us are exposed to in life, and the sexuality that describes most people, is heterosexual. That doesn’t mean that there’s anything wrong with not being heterosexual, but it does mean that if that word doesn’t describe you, you want a word that does describe you. And so, there are labels.

Labels that we talk about a lot in our family have to do with neurodivergence. Both of my sons are autistic; my oldest also has ADHD, we suspect my younger son will probably have that diagnosis when he’s a bit older as well (he certainly has the impulsivity for hyperactive type); my husband recently got a diagnosis of combination type ADHD, and I’ve been sitting here for years, calling myself autistic because it’s the label that best fit my experience with the world.

It still does, by the way, but things have gotten much more complicated.

Self identifying as autistic is a controversial thing, and people can get pretty cranky about it. The assumption is that some people claim an autism diagnosis–especially online–for various types of clout or as a kind of “get out of jail free” card. I’d say that neither of those things happen nearly as often as the cranky folks like to claim, though being an old on today’s internet, I can’t know for sure. It’s been my experience, though, that at a bare minimum, those who self-diagnose as being autistic don’t do so on a whim or for funsies, but because they’ve done as much research as they can reasonably do and have found that the diagnosis resonates with them… and because getting professionally diagnosed can be pretty difficult, especially as an adult and especially as a woman.

My own path to self diagnosis–and eventually, an unexpected diagnosis, but we’ll get there in a minute–started when my younger sister was diagnosed with Asperger’s Syndrome in the late 90s. She was 10 before anyone suggested that she might be autistic and 12 when she got a diagnosis (for comparison, Isaac was diagnosed at 19 months, and Sammy was diagnosed at 7). 

As my family learned more and more about autism (which, note here: Asperger’s Syndrome has been reclassified as simply being part of the general autism spectrum disorder list, at least partly because the diagnosis was created by a literal Nazi who wanted a classification for autistic people who were functional enough to avoid the gas chambers. The more you know~), we started talking about “autistic tendencies,” which isn’t a thing, but it was what we had to describe ourselves at the time. A lot of this involved talking about the more overt signs of autism that would tip off a neuropsychiatrist or two: stimming, rigidity when it came to schedules and behaviors, social awkwardness, sensory sensitivities, picky eating, echolalia, communication struggles, etc. None of it was ever severe enough to warrant assessments for my brother or I–we were mostly good students, albeit socially awkward with terrible time management and a penchant for not doing homework, but nothing about us raised flags red enough that our schools suggested diagnoses for us. As far as anyone told us, we were “normal.” Quirky, but within the “default” range.

The trouble is that no, I was not “normal” or “default,” and I knew it. Which is something I want parents to internalize because I’ve read and heard before of parents not wanting their kids to be diagnosed with something because they don’t want them to have that label or go through life thinking that they’re different. Your kid knows they’re different. They know that their peers do certain things more easily than they can. They know where they struggle. They know that they aren’t the “default” setting, and disallowing that label absolutely does more harm than good.

Because, you see, when nobody tells you that your brain works differently, so of course your experience with the world is going to be different, you assume that the problem is that you’re just not good at being a person. Which is where I was for most of my life. It was like other people had been given a manual on how to do certain things: how to read between the lines of conversations, how to not bump into walls or trip over thick clumps of air, how to recognize when it was their turn to speak or not go completely silent in an echoing cafeteria or restaurant. They knew by default the order that things should go in, they knew how to pay attention in class without doodling and how to do their homework all the time. They knew how to make and keep friends. 

And then: me. Socializing has always been an uphill battle for me. I don’t know when to say something or what to say or how to say it, particularly when talking to people face-to-face, unless it’s a conversation with a set sort of script (for example: “Doctor, I’ve been having worse and worse migraines for the past several months, and I wondered what we could do about that?” “Yes, I’d like to return this blanket because I accidentally ordered it in the wrong size.” “What time should I drop off my kids for this activity?” “What would you like us to bring to the Christmas party?”). I struggle to read between the lines of conversation, so those unspoken messages that are such a huge part of communication (some researchers say it’s at least 55%) go right over my head. I can write well, but most other academic pursuits are a struggle, and I can never get my homework done. I bump into walls, I trip over thick clumps of air, I sprain my ankle walking off a one foot stage platform. The louder the environment, the quieter I am. I fiddle with my hair, pick at my skin, bite my nails to nubs, pull out my eyebrows. I walk on my tip toes all the time, especially when I have bare feet. I hate wearing jackets, and I only started trying new foods once I hit adulthood and wanted to impress Kyle when we started dating (and by “impress” I mean that I didn’t want him to find out yet that I was a weirdo who subsisted on butter noodles and chips and salsa).

(which he did eventually find out, but only after I made myself look cool and default by eating ribs and drinking Dr. Pepper)

The explanations for these things ranged from physiological (“you walk on your tip toes because you have a short gastrocnemius tendon in the back of your leg and need physical therapy”) to complimentary (“you’re an absolute genius writer and breezed through the style class, which nobody has been able to do in years”) to insulting (“well that was stupid, why would you even think to put the papers in that order?”) to cruel (“you are lazy and terminally unprofessional, and unless you learn to shape up, you will never succeed in your career”), but they all seemed to boil down not to a difference in brain function but rather to a deficit in my behavior or personality, something that I could change, but I simply wasn’t for reasons that nobody could pinpoint.

And that’s a blow and a half to your self-esteem. It’s one thing to know that you struggle in areas where others seem to excel quite easily, but to have those struggles blamed on your own personality deficits is pretty brutal. And worse, I didn’t know how to repair these supposed personality deficits, because nothing I did–nothing anyone else did–seemed to work. Punishments, scolding, yelling, training, therapy, encouragement… it all seemed to go in one ear and out the other.

Which is why, when I started thinking that maybe, just maybe, I didn’t have autistic tendencies but actually had autism proper, it was like a weight slowly being lifted off my shoulders. It seemed that maybe I wasn’t bad at being a person, that maybe I hadn’t missed out on receiving the “how to human” manual. Maybe my brain just works in a different way from other people’s. Maybe I’m not “default” and bad at it; maybe I’m autistic and perfectly fine at being that.

It took a while of digestion to start accepting it, and I don’t think I really embraced the idea of being autistic until around when the twins were born, perhaps a little while afterwards. At that point, I’d left yet another job being scolded for things I didn’t realize I was doing wrong or things I was doing wrong but had no idea how to properly fix. I ended up with three straight years of being a stay-at-home mom without much of a break, save for my kids’ therapies, and that was enough time for me to start really looking at myself and accepting that hey, this is who I am. This explains so much about me. This is a label that I want to have.

The trouble is, of course, that self-diagnosis doesn’t get you very far. You can talk about being autistic, but at the end of the day, it’s your interpretation of things, and I wanted it to be solid fact, set in stone, I’m autistic and if anyone has a problem with that, they can eat my shorts. When I took my oldest to his assessment, the pediatric neuropsych politely looked at me and asked if I’d ever been assessed or considered it. I said that I hadn’t and she said, “hm,” and wrote things down, and it got the wheels turning. 

I talked to my therapist, my prescribing RN, and my primary. The former two were enthusiastic about giving me references, while my primary, who is “meh” at the best of times, remarked, “I haven’t seen anything in your behavior that would suggest autism to me, but I’ll see what I can do about that referral.” Which, okay, I’ve learned over the last 35+ years of living on this planet that if I appear too weird, I may as well exile myself from society at large and go live in a cave; and what’s more, doctors only see me when I’m coming in with the prepared “doctor” script: “hello, I am dealing with [problem] and would like [solution].” It’s rare that they see me unmasked and unscripted, so. Okay. 

(the doctor who has seen me unmasked and unscripted is my OB-GYN because he has performed two surgeries on me, one of which I followed by telling him–while high on fentanyl and ketamine–that I loved him)

The referral process was, to put it mildly, exhausting. I started it roughly two years ago, and it’s been a lot of back and forth with insurance companies, doctor’s offices, neuropsychiatry departments, more insurance companies, more doctor’s offices… about a month ago, someone from the neuropsychiatry office called to say that they didn’t accept my insurance any longer (which sounded fishy because it’s one of the largest insurance providers in the country) and that they’d put me in a file and I could call back if I ever changed insurances. I hung up, started to have a breakdown, and then she called back saying that she’d misread the file, and about a week later, I had my appointment scheduled for the day before Valentine’s Day.

And it almost didn’t happen. This past Friday and Saturday, I got hit with congestion and sinus pressure so bad that I thought I was going to lose my mind. I took a Covid test that I thought looked faintly positive (blame all my years trying to conceive for that one) and started to internally panic because rescheduling this assessment would be another enormous ordeal. Thankfully, though, subsequent tests came back blatantly negative, so I went ahead on Monday, even though I’d only gotten three hours of sleep and had a crushing headache.

I was apprehensive from early on, as I was told there would be a written portion to the assessment, and I had no idea what that would entail. The neuropsychiatrist mostly made me feel better, since she had a welcoming personality and was very straightforward about everything. She asked me questions about my history, my family’s history, my health, and then asked what I was looking for in the assessment. I explained that while I was fairly certain I was autistic, I wanted confirmation that no, I’m not just bad at being a person, that maybe there’s something else going on. She understood but also explained that even if she thought I was autistic, she likely couldn’t give me that specific diagnosis. As it turns out, insurance companies aren’t terribly keen on covering autism assessments once a person has turned eighteen (because, as we all know, the autism flees the body at midnight on the eighteenth birthday), so in order to get a proper assessment as an adult, you have to find a neuropsychiatrist that doesn’t take insurance and pay for it out of pocket, often to the tune of thousands of dollars. 

This is, of course, absolute horse shit. Which is the neuropsychiatrist’s assessment as well.

“What I can do,” she said, “is give you an idea of anything else that’s going on in your brain that might contribute to the things with which you struggle. We’ll do an I.Q. test, and then I’ll have some questionnaires for you, and while I won’t have the full report ready for another two to three weeks, I’ll try and at least give you my impressions before you leave today.”

Fair enough, I thought, and we began.

The I.Q. test was by far the longest portion of the assessment, and while I have my own thoughts on I.Q. tests as a whole (they have a racial and class bias and don’t really test inherent intelligence so much as opportunity), it was an interesting experience. We started with the verbal portion–memorizing lists of ~15+ words, naming as many animals or words that started with S as I could, defining words, explaining relationships between pairs of words. I knew I did well there; the neuropsychiatrist kept humming and saying, “oh wow, I don’t think I can spell that one,” which are generally good signs. 

Then we moved on to less verbal things, and I started to flop. She listed off a series of numbers for me to repeat back, and I think I did alright. Then she listed off a series of letters and numbers (like “192AQM7KD0217B”) and had me tell her how many numbers were in the sequence she’d given me. I had to read a page of the words “red blue green” in various orders; then I had to look at a page where each line was one of those colors and list the color given; and then I had to look at a third page that also had the words “red blue green” but each word was a different color from the word and I had to name the color and not the word. I had to look at patterns of increasing complexity and find the missing piece to each pattern. I had to look at shapes and choose the three puzzle pieces necessary to build the shape. I had to do complicated connect the dots puzzles and draw abstract shapes from memory. I had to look at a computer screen and press the spacebar whenever I saw a letter except the letter X.

(I didn’t do well at all on that one)

Once all of the I.Q. testing was done, I did the written portion, which was ultimately just self reporting on depression, anxiety, ADHD, and autism symptoms. And then the neuropsychiatrist tallied all of my scores and gave me her impressions.

The first impression she had was that she was comfortable diagnosing me with inattentive type ADHD. This basically means that while I don’t have the impulse control issues or hyperactivity associated with ADHD, I can’t focus on things to save my life–which honestly tracks with literally everything. I was explaining last night, for example, that while Kyle is an excellent DM for our D&D campaign, I cannot stay focused on just the game to save my life. I can’t focus on TV shows without having something to play with in my hands. I can’t do work without having something open in a second screen (which drives my managers bananas). My mind wanders frequently and far, and it always has, and the trappings of ADHD as a whole–struggles with time management, executive function, and rejection sensitive dysphoria–are things I’ve been familiar with for a very long time. 

It’s not surprising that I was never diagnosed with ADHD as a kid, as I grew up in the 90s, and ADHD wasn’t something they looked for in girls back then, especially if it lacked the hyperactivity and impulsivity component. I have zero impulsivity and like to sleep (and always have), but distractibility is my personal demon and has been since I was a kid. Still, I got decent enough grades that I managed to slip under that particular radar and stay in the honors and AP class setting throughout high school, so nobody really thought much of the doodles in the margins of my notebooks or the fact that I couldn’t finish homework to save my life. The real struggles were ones that people either chalked up to me being lazy/not math brained (read: failing out of trigonometry) or me just being shy and socially awkward. And neither of those are things associated with ADHD or really treatable with medication, so it didn’t ping the radars of any teachers, parents, or doctors.

(which I want to make abundantly clear: because my ADHD and NVLD, which I’ll talk about below, present differently from what people expect, I don’t blame anyone for not seeing them for what they were; I just accepted them as being personality deficits for the longest time because nobody knew better back then, but knowing better now is part of my own journey towards healing and living a better life)

I have the option to treat my ADHD with stimulants, but I’m holding off for numerous reasons, not least because right now, the gold standard medications for ADHD are very hard to find for reasons nobody can quite explain. I think I do eventually want to try and medicate, just to see what magical things I can accomplish when I can actually focus for more than thirteen and a half seconds a time, but I don’t want to start only to immediately start dealing with withdrawal. I’ve done that with my antidepressant, and it’s ugly. Instead, I’m mostly using this to inform my life. No, I can’t pay attention. A fae creature at one point said, “Can I have your attention?” and I stupidly gave it away and now it’s gone forever. Give me accommodations so that I can make your life better.

Outside of inattentive ADHD, the neuropsychiatrist said she felt comfortable diagnosing me with something that’s somewhat controversial because it’s not yet in the DSM (The Diagnostic and Statistical Manual of Mental Disorders, basically the guidebook for neuropsychiatry and psychology) but that she felt fit me rather well. It’s called Nonverbal Learning Disorder, and it basically does the opposite of what it says on the tin: people with NVLD are excellent at verbal expression and comprehension but really struggle with almost everything else about learning and existing, especially things in a visual/spatial context and things in a social context. People with NVLD tend to be very well written and well spoken but they also tend to be clumsy and not understand a lot of social cues or rules (like rules that might define professionalism in the workplace, for example). So for example, someone with NVLD might be able to write you the most beautiful letter you’ve ever read but then will get completely turned around trying to get to your house because they couldn’t read a map. They have extensive vocabularies but get tied up when it comes to puzzles and math. They express themselves beautifully but don’t read between the lines of a conversation.

NVLD is a disorder that’s come up a lot more frequently since Asperger’s Syndrome was removed as a potential diagnosis for people who have similar symptoms. It’s often an alternative to an autism diagnosis when neuropsychiatrists look at autism from a framework of always meaning a struggle with communication and excellence in visual and spatial (and often mathematical) fields. And at the same time, it’s often comorbid with ADHD, autism, and a whole host of other learning disorders. 

And I guess I’m of two minds about it. On the one hand, I do feel like the NVLD covers a LOT of my issues when it comes to schoolwork and work work. It’s something I wish I could have on a piece of paper and take back to my high school trigonometry teacher and shove it in his face, like, “SEE???” It makes my learning methods make sense, where I’m not necessarily bad at things that aren’t language, but where language is concerned, I utterly soar while with everything else, I stroll along at a normal pace. 

But I also don’t think either the ADHD diagnosis or the NVLD diagnosis cover everything. I still don’t have a lot in the way of talking about my sensory difficulties, how I can’t talk in loud restaurants or how wearing socks makes paying attention five thousand times harder. While I’m not as rigid as either of my sons (because heaven forbid our daily schedule look even slightly different for either of them), I do get tense when things change unexpectedly, more tense than you’d expect someone without specific neurodivergences to get. I think that I am autistic, and while the NVLD may be a more specific flavor of that autism, it’s autism just the same.

The thing was, too, that the neuropsychiatrist explicitly said that she wasn’t qualified to diagnose me with autism anyway, that she didn’t have the necessary training to recognize that, particularly in an adult. So whether or not I am autistic remains something of a mystery that I don’t really have an answer for, and that is, in no small part, because of the way health insurance functions in this country.

But I have some answers. Some labels. I can request specific accommodations that will help me in specific ways. I know that I’m not simply bad at being a person, just my brain is operating on a different system, and while that may be a disability (and it is, in a lot of ways), it also gives me something of better insight into who I am, why things in my life have happened the way they have, and what to expect going forward.

And that’s not the worst outcome by a long shot.

A Week

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The last time this happened was 2020, which is an ominous way to begin any sentence.

Isaac was not quite two and had come down with a “mystery respiratory virus” that required him to be on a nebulizer and antibiotics. In very little time, I also came down with this “mystery respiratory virus” that required me to also be on a nebulizer and antibiotics. Kyle worked from home while Isaac and I recuperated, and right when we were all feeling better, we got slammed with a stomach bug. On the plus side, said stomach bug got us used to ordering groceries through a website. On the minus side, well. Everything else.

Masks work, and I know this because our absurdly respiratory illness prone family hasn’t had a winter like this since mask use became popular right at the beginning of Covid. Even last year, when various illnesses started quietly spreading again, it was nothing like the years before, when Isaac and I, both of us with the lungs of a frail Victorian character, were knocked down for the count within days of the first sniffle.

But lo, here we are in 2023, and here Isaac and I are, both fighting the same respiratory bullshit. It’s hit Isaac harder than it’s hit me. Yesterday, we took him to urgent care and found that his O2 levels were at 88%, which is easily within ER range. PCR tests for both Covid and strains of the flu came back negative; it’s just a regular ass cold that turned into regular ass pneumonia. He’s on an albuterol nebulizer, like he used to be every year, and he’s on antibiotics, like he used to be on every year. He got a dose of steroids yesterday, which has the dual effect of (a) improving his breathing, and (b) making him really angry.

So that’s fun. And while we’re dealing with that, we’ve also been dealing with a cascade of other bullshit. In order:

Last Tuesday, Kyle brought our smaller car into the shop for an inspection sticker. It’s three months overdue. While he was there, the mechanic informed him that it failed because of some LCD light thing that they could technically fix, but they needed to order the part and it wouldn’t be in until Friday at the earliest. Kyle agreed to bring the car back on Friday.

So we did the whole week with only one car, which was easier than anticipated. All things considered, last week was pretty chill. Until Friday.

Friday during the day, I started feeling crappy, which was unfortunate because Kyle had to drop the smaller car off to be fixed. He did so while I stayed home, throat sore, feverish, exhausted. Every Friday is a half day for the twins, so I played referee for them in the afternoon while feeling like I’d been hit by a small bus; but in the evening, I had the chance to rest and took it with as much gusto as I could muster.

Friday evening, Kyle called the mechanic to check on the car, only to learn that oops, they hadn’t gotten  the part in by Friday after all. We couldn’t pick the car up that night, but that was probably for the best because I was in no state to be doing anything beyond sleeping. This particular virus–not Covid or the flu, mind–is brutal.

On Saturday, I didn’t get out of bed very much. I think it wound up being a couple of hours in the afternoon and then about 3-4 hours in the evening for D&D, during which I mistakenly asserted that I thought I was on the mend. 

Before D&D, Kyle sought to cook us breakfast for dinner on our stove, which once turned on, made a fancy “BZZT!” sound and displayed arcing blue light under the cooktop. Kyle immediately and correctly assessed this as what industry professionals call “not good” and turned off and unplugged the stove and flipped off the breaker going to it for good measure. We called an electrician that night, and said electrician mentioned he couldn’t come out right then but that he’d try and be out as soon as he could and, by the way, don’t use the stove until he can assess it, but it sounds like said stove was on the way out. So that’s neat.

Sunday was mostly chill except we had to figure out a way to feed three kids while also not having a stove, and two of those kids are autistic and very picky about food textures. Isaac was really starting to feel sick on Sunday, as was I, so he didn’t eat much, and I ended up having ice cream for dinner. No word about the stove.

Monday could’ve also been chill and restful, but the weather decided to throw everything it had at us–snow, sleet, ice, freezing rain, regular rain, the works–so the kids didn’t have school. Carrie was now starting to feel sick, so this was a surprisingly quiet snow day for us (usually our snow days are just pure chaos), but kids being home is always a bit harder than kids being in school. We heard a bit back from the electrician, who said that he couldn’t make it out in the storm but would come by first thing Tuesday.

So the electrician came first thing on Tuesday and, delightfully, the stove is still usable, minus one burner. We’re going to be replacing it sooner rather than later, but it’s not an emergency situation, so we can get through this bullshit week before replacing it, and that’s a great sign. Once the electrician had come and gone, and once we’d dropped Sammy off at school (since the twins were both feeling crappy), we went to pick up the smaller car, which passed inspection, and came home to call Isaac and my respective nurse lines, since neither of us were having a good time. Both nurse lines said that while this all sounded miserable, they have approximately six billion people in right now with the same symptoms so unless we were experiencing shortness of breath or whatever, we should just wait it out.

Remember that for later.

Tuesday night, Isaac was waking up with a bad cough fairly often, and Carrie ended up spiking a 103 fever around 1 a.m., so we were just. In a special place when we went to bed on Tuesday night. Very stressed out, and me still feeling like my lungs were gradually filling with sand (though I started feeling like I was on the mend late that night, so maybe the sand was leaving or something, I don’t know).

But anyway, Wednesday morning, Kyle called the pediatric nurse line again to say that hey, Isaac is still not doing great. They advised that he come in, since it was only a fifteen minute wait, and lo and behold, Isaac’s O2 levels were frighteningly low. Low enough that they said, after giving him baby steroids and starting his breathing treatment, that if neither of those things worked, he’d have to go to the ER by ambulance. Fortunately, both worked, and although Isaac wasn’t doing well by the time he left the urgent care, he’d improved slightly. After a brief hunt for antibiotics, he and Kyle came home, and we started the treatment phase, and now it’s today.

It’s honestly a weird week where the car being in the shop is a footnote. And where the stove not working is a minor inconvenience instead of a Major Issue. But here we are. I have no idea if I’m properly on the mend or not; if I am, it’s a slow climb. Isaac is definitely on the mend, but is sitting at the “wounded tiger” phase of being sick, by which I mean he’s lashing out at literally everyone for any given reason. This is a welcome change from the floppy listlessness of yesterday, but I’m looking forward to getting my smiley guy back.

And, well. To this week being over altogether, mostly.

Inability

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Fibromyalgia.

That’s what I texted Kyle and my mom and my best friends after I got out of the rheumatologist. Just one word because it was the diagnosis I received, and it didn’t need a whole lot more explanation in that moment. I was in pain; I have been in pain for years. And there was the answer to my wondering why: fibromyalgia. 

The frustrating thing about getting a diagnosis of fibromyalgia is that most of the medical community looks at it with a loud shrug when it comes to what it is, what causes it, how to fix it. On the one hand, certain therapies help: gentle movement, gentle activity, tai chi, yoga, and certain medications that I was on already like gabapentin and venlafaxine all tend to lessen symptoms or, at the very least, trick your brain into saying “well this isn’t so bad.”

(the irony of the movement is that if you do too much of that, you end up exhausting yourself, so it has to be balanced: walk, do yoga, swim, but be gentle with yourself, or you’re going to reach the end of your routine and be a noodle)

But on the other hand, it’s a disorder that’s not understood very well, and unlike a lot of autoimmune disorders, it’s not one where your usual regimen of NSAIDs or even opioids will do much good, because the problem isn’t inflammation so much as it’s your brain getting confused about the signals it’s receiving from every nerve in your body. It’s sort of like this:

What research there is shows that fibromyalgia tends to develop after a physical or mental trauma, which tracks because I’ve had this pain since shortly after my Awful Back Incident in 2020. It exhausts you on so many levels because you’re constantly fighting pain that doesn’t even make sense; it’s not like inflammatory pain or pain from an injury. It’s just pain, every nerve in your body responding to every conceivable stimulus it receives by sending pain signals. 

And nerves are one of those fun areas of the body that most doctors just shrug loudly about and say “idk, it’s magic I guess?” (obviously not literally, but you know what I mean) It’s roughly a step up from “you have ghosts in your blood and you should do cocaine about it” like we had in ye olden days of medicine, but not a huge step. And there are experimental and off-label treatments all over the place–LDN is one that I’ve heard a lot of good about and plenty of people happily extol the virtues of marijuana, particularly higher CBD strains–but it’s not a super sexy and easily understood disorder so it’s not something that people are champing at the bit to fix, at least not right now, at least not in huge numbers.

So. Fibromyalgia.

I’ve had a couple of good cries about it. Maybe that’s emotionally fucky of me, but I don’t really care. I know it’s not the end of the world, and I know that functionally, very little about my life has changed–I’m not even on any higher doses of medication or anything–but I think knowing that not only is my diagnosis one that’s lifelong (because as of right now, there is no cure for fibromyalgia) but also it’s one that doesn’t have any therapies that work quickly. And that shouldn’t be frustrating, but it is. Before I went to the rheumatologist, I was doing my own research (I can see you, doctors, tsk tsking me over there) and playing “what if it’s this” with a bunch of autoimmune disorders. So many people talked about going to the rheumatologist, having said doctor take one look at them and say “you have [x]” and prescribe them some shot or drug that made them feel better within 24 hours. Obviously not a cure, but a reduction in symptoms. 

But fibromyalgia isn’t like that. My rheumatologist told me the main things she’d suggest prescribing were medications I was already taking. That exercise and movement would help me but both would take time to really work their way into my brain. That fibromyalgia is very real–that the symptoms aren’t psychosomatic or anything–but that it’s heavily misunderstood.

I don’t know. I feel like that’s something fair to cry about. Sorry, you’ve got an incurable disorder and the best we can suggest is that if you exercise you will eventually start to feel better, and maybe some drugs on the market could be useful but we’re your physicians and we’re very skittish about prescribing things for off label usage, so have fun. 

It’s required adjustments in thought, for better or for worse. I’ve already been looking at my life differently because, hey, autism; but then you add this disorder to the list and it’s a whole new level of different ability, as the Autism Mommy T-shirts say. Right now, that looks like taking things a lot more slowly than I have been. I’d been looking at life kind of in a mindset of “I’m just going to get back into things, I’m going to push myself a little bit more each day” and yeah, that’s technically what you should do with fibromyalgia, but if you’re also dealing with mental stress while pushing yourself physically, it produces interesting results. 

Specifically, this past weekend. Halloween, what have you. I feel like once upon a time, my Halloween adventures with the kids wouldn’t have caused problems for me: I stopped by a few stores Saturday morning and then took the kids to the town trunk or treat in the evening, which was a lot of standing in line, waiting, etc. Then on Sunday, we took the kids to Barnes & Noble and Target. Again, normal things, but both days just wore me out completely. Maybe it’s the stress of this month (we’re going on vacation in a little while, so I’m still piecing that together), but my brain and body are like… not fans of doing stuff. 

I talked it over with Kyle, and we decided that it’s a good idea for me to have a disability placard for our cars. It’s a weird thing because fibromyalgia is a decidedly invisible disability, but I’m discovering more and more that any level of overdoing it, including walking too far between the car and the store or between the car and the hotel and so on and so forth. And on one hand, I feel like I need to justify it over and over again, but on the other hand, like… no? ??? It’s justifiable from my doctor’s standpoint and from the standpoint of the state, so there’s really not anything else I need to do. 

Besides take it easy.

And get to a dispensary sometime. 

And figure out an exercise routine.

But all of that when vacation is over. For now, I’m more focused on getting cars inspected, oil changed, tires checked; getting road snacks and creating packing lists; pulling together a driving playlist and figuring out where we’re going to have Thanksgiving dinner.

And doing it all while being like, ah, I can’t do as much as I used to. 

So that’s neat.

Control

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You know what’s weird is realizing that you’ve finally taken control of an aspect of your life that had been almost wholly out of your control to that point and feeling an immense sense of relief about it.

I am, of course, talking about my fertility, or rather, my now permanent lack thereof.

It’s really weird to be relieved about this, the fact that I can’t get pregnant accidentally any longer, but I am. As of last Monday afternoon, I no longer have any fallopian tubes. They’ve been discarded as medical waste (which disappoints me), and if I ever want to have another child, it’s going to have to be through IVF, or more accurately, by taking the embryos that I already have frozen and having one transferred.

(only one. I will not risk another set of twins because this house would promptly collapse like unto the House of Usher)

I’m now feeling back to 100%, or as close to 100% as I am capable of feeling. My wounds are mostly closed up, though they still have lingering bits of tape on them (which I shall not peel off because I’m terrified doing so would cause Problems, and I don’t want Problems). My energy levels are back to normal, and I’m able to be upright for the bulk of the day. Kids and cats have poked at my abdomen and I haven’t screamed, so I’m calling that a win.

The mechanics of the entire situation are really boring, honestly, so I won’t go into excruciating details. It was a chill surgery. I fell asleep before anyone even asked me to count, woke up to my doctor congratulating me on my sterility and offering me some apple juice. The pain was at about a 7 when I woke up and went down to about a 2 with the administration of fentanyl. I didn’t even need the pain meds I was prescribed most days–I just slept and took them at night to make sure I wasn’t going to wake up. I ate Pop Tarts in celebration and slept like 18 hours for the first two days and then was just really bored a lot. 

It’s more the emotional aspect that I’m working through, because it feels weirdly powerful. I’ve had hellish periods since I started getting my period. My uterus is my enemy. If I were more settled about never having another kid, and if doing so wouldn’t fuck up my hormones irreversibly, I’d have the thing removed and sent on a one way trip to the sun. I had no control over it, and even when I’d take birth control to try and minimize the pain in one way or another, that came with its own set of issues: weight gain, depression, acne, migraines. My body was this monster with a mind of its own, and that mine was not mine.

And I always internally took comfort in the idea that maybe, just maybe, I was having these horrible periods because it meant that when I was ready to have kids, it would be nice and easy for me. I’d wanted to be a mom my entire life, so the idea of that coming easily to me really appealed.

But no, that didn’t come easily to me, and it took either medication or procedures that, without insurance, cost as much as a small car for me to have kids. And even those expensive procedures took ages to succeed and it was like… what the hell. Why is this thing not in my control, at all? This is my body, it should be more under my control, and yet, it’s not. It’s MOCKINGLY not. What the hell.

(and this bleeds into other areas where my body is out of my control, like PCOS that makes weight loss and looking like anything but a hairy potato kind of difficult; or like whatever the fuck is going on to make my joints feel like they’ve all got a corn chip stuck in them)

But now, with the political climate being what it is (and if you want to debate me on that, fuck off), I just wanted to have something resembling real control over my body. Something permanent. And yeah, I’ve got birth control, we use condoms, there are a million other options, but I want complete control, on the off chance that Things Happen. I don’t want anyone to have a say in what my body does or doesn’t do but me. 

And now that I have that say, it feels good. It feels powerful. It feels like putting my foot down and saying that this one thing, this body of mine, it belongs to me, and you cannot do what you want with it, and you cannot force it to get or remain pregnant if I do not want it, and the only one who makes decisions about it is me. You cannot use it unless I say you can. 

I mean, until I’m dead. Then go nuts, I don’t care. But until then, this is mine, and you do not get a say.

Anyway, this is super short because I’m tired but I wanted to write something about getting my tubes tied, and the only other emotion I feel about it is disappointment that I haven’t yet enjoyed a celebratory cake over it, but since my birthday is in about three weeks, I’m sure that will be remedied soon.

Style

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When I was in high school and college, I paid a lot of attention to how I looked. I loved dressing up in certain ways, wearing real outfits that weren’t just jeans and a t-shirt. In college, I fought off depression by spending absurd amounts of money on makeup (admittedly, not expensive makeup, but if you’re buying a bunch at CVS every week, it adds up), and while I never put much effort into my hair outside of the salon chair (blonde for one year, red for the rest, never quite achieving the chunky highlights I wanted and thankfully avoiding a Kelly Clarkson look), I still took care to make sure I looked decent, at least when I wasn’t heading for an 8 a.m. class.

I lost that at some point.

I don’t know when I lost it. Maybe the summer between junior and senior years, when depression hit me like a lahar, knocking me down and burying me up to my eyebrows in mud so thick I couldn’t get out of bed most days. Maybe after I graduated, when I was so panicked about finding some sort of work that the idea of really pulling together a Look seemed insurmountable. Either way, by the time I’d left school and entered the “real world,” the effort required to pull together a cute outfit and do my makeup seemed pointless. I wasn’t quite schlubby–that came later–but I didn’t care. 

It wasn’t really from lack of desire to care; it was more from–I don’t really know. Something sapped my ability to do so. Maybe it was the corporate grind of those early years, the drag from temp job to temp job or retail work to retail work (because an English composition degree doesn’t lend itself to very many career paths) and the slow spiral of untreated depression. I wanted to curate a closet of cute looks, but lack of money and that fucking drag prevented that from really being the case.

And now I’m on the other side, a nearly forty year old parent whose fashion sense can best be described as “pajamas that are (probably) clean.”

I don’t much like that. Don’t get me wrong, I am a proponent of comfort over style, function over form, but I look at myself in the mirror and don’t like who I see looking back at me because it’s not just that she doesn’t care about her outfits or makeup (lol what makeup). It’s that she doesn’t care about herself.

I honestly don’t know when that happened, but I feel like it was a slow decline. Bit by spoony bit, saying, “well, that doesn’t matter,” until the person looking back at me was unrecognizable by most of my standards, and I’m left doing some weird sort of mental calculus every time I want to go out, the math of “how schlubby can I get away with looking.”

And it’s part chronic pain making it hard for me to dredge up the energy necessary to really put work into my appearance, and it’s part being tired all the time, and it’s part “wow, three kids is a high number, and oh, they all have IEPs and you’re constantly emailing back and forth about whatever they’re doing at school? Wow, that’s an even higher number than three somehow.” 

BUT NONE OF THAT IS THE POINT OF THIS ENTRY and also it’s really depressing to think about, so we’re moving away from it.

The point is that I now have the time, some of the energy, and the resources to actually try and make myself less schlubby. I’ve got my Caboodle full of makeup that I can use when I really want to (and/or when I find time to dig up a makeup tutorial somewhere that’s easy to follow and caters to my hooded but not super hooded eyelids), I’ve got large swathes of the day free to play with makeup and fashion, and I’ve got the desire to look less like a sentient pile of (mostly clean) laundry. My only struggle at the moment is figuring out what I want this new fashionable me to look like. 

See, when I was younger, while I was really good at having outfits and wearing makeup, I didn’t really have a Look, per se. It was more just “ooh, this is cute!” regardless of whether it pushed towards surfer chic or vaguely skater-esque or grunge or preppy or goth. My closet had personality, or more accurately, personalities, and I could never settle on just one look. Now as a woman pushing forty, I want to really narrow that down and decide what I want to look like. 

My first instinct is to go wholly goth. I love the goth aesthetic, less from a super edgy look at me perspective and more from a “why yes, I would like to be a vampirewitch all the time, thank you” perspective. 

And I’ve been leaning that way with most of the clothes I’ve bought in the last year. I’ve started to move towards a collection of t-shirts and dresses that are all black, all the time, or at least mostly black or gray. It’s kind of lazy goth, really, because the hardcore goths REALLY go for it in a way that’s a bit more than I’m comfortable doing (largely because it seems like quite a lot of work for a trip to Target). Doing this has made shopping both more difficult and easier–I can narrow down my choices more quickly, but I also really have to dig for certain things (shopping for a dress to wear to my cousin’s wedding at the beginning of the summer was an adventure, and I’m still not wholly pleased with what I got). 

The trouble, though, ends up being that I can’t commit to goth shoes any longer. This fact saddens me greatly, as goth shoes are just. Perfection. Everything about them is perfect. I’ve lived for finding good goth shoes most of my life to this point, starting with a pair of knee high platform boots my mom got me for Christmas when I was 17 (boots that, along with my favorite red dress, frequently got me into trouble during my college years) and continuing right on through to the knee high combat boots and black motorcycle boots I have nestled in my closet right now. I love them. 

But I cannot walk in them any longer. 

Between the wtf of my chronic pain in my fingers and toes and small bones of my feet and the “oh that makes sense” pain of my sciatica, I’m basically relegated to Very Supportive Sneakers. And that’s fine, and I love my Very Supportive Sneakers, but it is a bit jarring to pair a wonderfully curated goth ensemble with a pair of gray and pink New Balances. It’s like a fashion mullet: spooky on top, Dad mowing the lawn on Saturday on bottom. 

Hrmph.

So it’s a work in process. But I’m figuring it out, and I’ll keep y’all updated as I do.

Some Me Time

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All three kids are in school full time now.

Somewhere, some judgmental person is like “how can you be so happy about your babies being out of the house all day???” but listen. I have spent the last eight years with someone either on me or in my uterus nonstop. Today, I got to go on a lunch date with my husband without finding someone to babysit for us. When I had to send emails this afternoon (because being a mom of three school-aged children means doing a lot of emailing), I didn’t have to worry that someone was going to get bored with whatever I’d thrown at them to distract them. I could just email and reply, email and reply. I was so fast.

So now I’m figuring out what to do with these hours between 8:00 a.m. and 3:00 p.m. when I used to have to spend 110% of my time making sure Isaac wasn’t bungee jumping from the top of the stairs (that still is a focus between 4:30 p.m. and 7:30 p.m., for the record), and a lot of it boils down to actually taking care of myself.

Anyone who’s raised twins can tell you that it’s a LOT of work. You essentially have to be in two places at once at all times, even more as they get older and more capable of causing problems on purpose (as they gleefully inform me they’re doing several times a day). Your own needs don’t just take a backseat; they get strapped to the rear bumper with some duct tape and you pray they won’t fall off when you hit a particularly gnarly pothole. And when it’s twins, it’s not a societal thing telling you that mom should give up taking care of herself while dad does whatever. If you’ve got a decent marriage, both parents are struggling and dragging themselves across the finish line at the end of every day, wondering how they survived.

Actually me at the end of any given day.

And then add autism into the mix, with its superpowers and drawbacks, and basically, I’m amazed that I made it to the twins’ first full day of school without actually being committed to a mental institution. 

(note that I did come close, but it was technically a partial hospitalization and it was under extenuating circumstances, i.e., a literal plague, so I still consider it a victory)

This week, self care mostly just looks like having very relaxing days. I was in sleep therapy for a while this spring and summer, and I’m pretty sure my sleep therapist would shit a blue kitten to see how I’m spending this first week with no kids at home. But that would be her problem because I’m sleeping not because I feel like I need to but because I can and I want to. I like sleeping, and I like sleeping even more when I know that I don’t have to worry about my kids while I’m sleeping.

After this week, though, it’s time to really buckle down on the actual self care. Not the forever naps or the eating bonbons or wearing sheet masks type of self care, but actually pulling my body back from whatever hellhole it’s been in for the past two years.

I’d written back in March, when I had time to write here semi-regularly, that I was working on getting a CPAP, and I have gotten one. And I’ve noticed a marked difference in my before and after life, though I didn’t realize the difference until one day, when I didn’t get enough sleep and suddenly, I felt cranky. That didn’t happen before because I was just in this permanent state of exhaustion that never ended, so I didn’t ever feel cranky. I just felt normal. 

But then the other day, I didn’t get as much sleep as I had been and had to function on this insignificant amount of time. And I was cranky. I was so upset about everything and I was like ??? what is going on? Until I realized that oh, I was acting like I hadn’t slept because I hadn’t, and boy was that weird. I was so used to getting such bad sleep for so long (roughly 70%-80% of my nights were spent not breathing) that I didn’t know what being sleep deprived felt like anymore because it was just my normal. 

So I’ve taken care of the sleep aspect, at least, but a lot of me is still tired. This is partly because I’m still recovering from however many years it’s been that I’ve had sleep apnea and been getting zero sleep. This is also partly because, increasingly, I’ve been dealing with absurd amounts of bizarre pain.

I say “bizarre” because it’s pain that I can’t really explain with anything simple. I can explain my knees and hips and ankles hurting because I am fat. That makes sense to me. I cannot explain why my toe knuckles and finger knuckles hurt pretty much all the time. As far as I know, I haven’t been running around all night like a gorilla, balancing on my fingers, or learning to dance en pointe. My fingers and toes have hurt for the last two years off and on and it’s just very, very weird.

When I spoke to my primary care doctor about it (not intending to, by the way; I went in to speak with her about a completely different matter, and Kyle said, “hey, while you’re there, why don’t you talk to her about your fingers and toes hurting?”), she basically diagnosed me with “being fat” and spent the rest of the appointment meticulously reading through the list of ingredients on the Dr. Pepper I confessed to drinking. Which… yeah, pretty par for the course when you go to the doctor as a fat person. And, mind, I’m not saying that I’m either healthy or not fat; quite the opposite, really, and I know the steps I need to take to improve my situation. 

But.

Anyway, my doctor thankfully also ordered bloodwork to check for autoimmune issues, because when you have the symptoms I have (nonsensical joint pain, skin that gets hot when it’s in the same universe as a day over 65 degrees, fatigue even when you’re getting decent sleep), it tends to indicate something autoimmune going on. One of the results came back elevated in a range that, from what I’m reading, tends to be consistent with autoimmune situations, so that’s exciting.

I do not want to have an autoimmune condition, I should add. They all sound wretched. Bare minimum, they sound like a lifetime of pain and medication to do away with the pain that has awful side effects of its own. But I’d also like to know what the fuck is up with my body already hurting. Like my body already hurts; I don’t need an autoimmune diagnosis to make that a thing. 

(as to why I never brought it up before, quite simply it’s because between the pandemic and raising three kids with varied special needs, my own needs were, as I said before, strapped to the back bumper with duct tape)

I have an appointment with a rheumatologist in late October, and I really hope that she isn’t dismissive, that she says, “yeah, no, drinking soda isn’t good and you should exercise, but neither of those things should cause your knuckles to hurt like this.” 

So in addition to alllllll of that, I’m looking to start exercising properly, now that I actually have free hours during the day. I don’t know when I’ll be doing that exercise, but I figure ~30 minutes a day, 4-5 days a week of moderate cardio should do the trick of getting my heart pumping and my body saying, “whoa, hey, we’re taking care of ourselves now! Neat!” We have a membership at a local community center that I plan to use for that purpose, and that’s something I’ll be doing starting next week.

And in between all of this, I’m also getting my tubes tied. With all the new bullshit laws happening across the country (side note: if you agree with any of those laws, you and I are not going to get along) and with any future children I’d want probably coming from a freezer at this point, tubal ligation just seems like a good option to me. And that is happening on October 3, and I am pretty jazzed about it. Hilariously jazzed, too, considering literally everything I went through to have the kids I do have, but honestly, having power over my own body is a good feeling and one I want to maintain as much as I can, all things considered.

(those things being everything I talked about above)

And I’ve got plans to clean out a whole bunch of stuff from our house and I’ve got plans to write again and I’ve got plans to take my camera out places and and and 

Basically, I do, in fact, miss my kids somewhat during the day… but I’ve missed myself a whole lot more.

Messy Houses

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Our house is a mess.

Our house has basically been a mess since we moved in, but it’s been messiest in the four years since the twins were born because taking care of small humans takes a lot of work, and sometimes, it’s all we can do at the end of the day to stare at the scattered toys and papers and books and crayons and say “meh. I’ll worry about it tomorrow.”

It’s gotten better. A few weeks ago, in anticipation of some friends coming up to visit, Kyle and I dove into a whirlwind cleaning spree, throwing out so many things and leaving the main living areas of the house look more “lived in” than “disastrous.” Our entryway now has a nice little set of cubbies for everyone’s shoes (or at least everyone whose shoes are below a size 5). Our bathroom, while not spotless, looks nice and usable. Our dining room is usable. Our kitchen is still a disaster, but I think we need a full day for that alone, so I find it forgivable. 

But the house is a mess anyway. And I have lots of reasons for it, like my increasing physical disability (update on the CPAP thing: definitely getting more restful sleep, but that’s just one problem solved, and my fingers and toes and everything have been in pain for about two years now, so let’s see what happens there) and the fact that all three of my children have some sort of special needs, visible and invisible. Frankly, as long as people aren’t tripping over things or existing in filth, that’s good enough for me. 

But that said, I still get a sinking feeling whenever something happens. Fellow parents know what I mean.

Something like the twins are being too quiet, so I go to investigate and find that they’ve gotten into our supply of foaming hand soap and used it to create a rave. Things like they’re playing tattoo shop and have covered themselves with marker drawings or they’re playing beauty parlor and have painted themselves and the couch with nail polish. How did they get the nail polish? I have no idea. It wasn’t there a second ago. Twins are their own mischief engine.

It happened today. Carrie was playing school with me, using the wall and her magic wand as the pointer to teach me words; I obediently repeated the words she said as she said them (“cat,” “Baby Box,” “DJ Catnip,” “Mercat,” “Cat Rat,” because we are on a Gabby’s Dollhouse kick) and ignored it when she used the wand to scratch at the wall as if drawing. After all, it’s a plastic magic wand, so it wasn’t going to leave a mark. And then Isaac joined in and it was all good fun.

Except Isaac did not have a wand.

Isaac had a crayon.

And I had that sinking feeling, because I imagined someone coming into my house and seeing crayon all over the living room walls, which are themselves a disaster. The chair rail is cracked in half in one place, held on with duct tape. The paint has peeled off in other spots, and there’s a large white plaster patch underneath the window AC unit. When I can trust the kids more to be less destructive, I’m looking forward to really making it look gorgeous. Maybe I’ll paint some designs on one wall or maybe I’ll just hold off until the economy figures out what the fuck it’s doing and save any further painting/chair rail destruction for the inevitable renovation that I’ve been vaguely planning in my head since we bought the house.

But right now, there is crayon on the wall. Marker on other walls and on all of our furniture. Our couches have nail polish and a lot of mystery stains, most of which are water but some of which are probably something else that I couldn’t identify if I tried. Our carpets are just sad and waiting to be torn up and replaced with vinyl. 

It’s embarrassing on some level. I remember friends I had when I was really young who had been in foster care for a little while. Their mother was so afraid they’d be taken again that she would bleach the walls of their house. Any mess was a disaster because she never knew if a social worker would show up. And that was always a fear in the back of my mind, maybe based in that or some off handed comment by some other adult in my life when I was young, that if you didn’t keep a perfectly Martha Stewart Living esque home, someone would come and take your children away.

I hate that. 

Because the truth is, my kids are happy and healthy. They scribble on the walls because they feel safe at home. Are they supposed to? No. Did they get in trouble for it? Yes. But honestly, I’d rather have a home where my kids feel safe enough to do something like color on the walls than a home where they’re so afraid of messing up that it gives them an anxiety complex. I want them to know that no matter what they do, no matter how messy things get, they are loved and they are safe. Nobody in this house will ever stop being loved because of crayons on the walls or mystery stains on the couches or ground up crackers in the carpet. And they’ll be helping to clean up those things, as they always do, because when you make a mess, you clean it up. 

But they’re safe. They’re happy. And that’s what really matters.

Waking Up

/ lovescienceandnat20s / 2 Comments

So when I got my CPAP, I hoped it would kind of be like in Sleeping Beauty where she just kind of wakes up and is beautiful and fine and life is able to go on. I knew from a lot of experiences I’d read that this usually isn’t how things work, that a lot of people who’ve had severe sleep apnea for a while (based on my history, it’s been at least since I was in high school, if not longer) need time to heal their brain and body from being so sleep deprived from so long; but I still hoped that I’d be one of those people who’d get on the CPAP and suddenly feel great and ready to fight dragons.

The first day was like that. I was too awake to go back to sleep after the kids left for school, and I wanted to stay awake, so I drank a Dr. Pepper in the morning (hey. hey. it’s probably less calories than the caramel mocha whatever you get in the line at Starbucks) and that kind of took me from awake to AWAKE. I was hyper. I have never been hyper. I felt like I wanted to be on a trampoline. I cleaned. And then at lunch, I had another Dr. Pepper and stayed somewhat zingy until I went to bed, and that was that. And I hoped against hope that I would be like that every day because wouldn’t that be nice? 

But that hasn’t been the case. The first day was like that, but subsequent days have been significantly less so. On the one hand, I think this is because a cold (not Covid, we tested so many times) and allergies have been rolling through our house making everyone snore (especially Kyle, very loudly) and making us all more tired than usual. On the other hand, I do think I have a lot of healing to do because it’s been something like 25 years that I’ve been dealing with this, and that sort of damage doesn’t go away overnight.

I have noticed differences. When I am awake, I feel like my brain is more there than it used to be. I used to have trouble keeping my eyes open at all, but now I just feel “normal” tired, if that’s even a thing. Before the CPAP, it was like I couldn’t sit down anywhere without my eyes trying to close on their own. Now, that isn’t a problem. I still feel really tired, but I’m not falling asleep where I sit, so that’s an improvement. I think. I don’t know, it’s hard to say, since it’s been so long since I’ve actually NOT felt tired that I don’t know what not tired really feels like?

I’m still on pain meds that warn that they cause brain fog, and I definitely still have some of that, but it’s not as bad as it was. I don’t feel like whoever’s in charge of the simulation keeps canceling my actions whenever I walk into the room, and I’m not completely losing conversations mid-sentence, so that’s helpful. I’ve even had the mental bandwidth to start being creative again, mostly with journaling (I do something called “junk journaling,” which is when you basically use stickers and scrap paper and whatever to make your journal look like a beautiful mess); and even though I absolutely do not have the emotional bandwidth to deal with the 72 separate apocalypses happening on a daily basis (do any of us?), normal weeks are back within my capabilities, and that feels better.

I think that’s the gist of it: I don’t feel great, but I do feel better. There’s a noticeable improvement. Everyone’s noticed it in the way I talk, even when I’m really tired. They say that I sound less exhausted, which is accurate. And that’s not to say that I never get exhausted (after all, I still have three kids and a life going on), but it’s not just my constant state of being.

I’m trying to push myself a little. This week, I’ve been trying to go to bed a little bit earlier so that I can get up at the usual 7:15-7:30 wake-up time and stay awake, but it’s a weird balancing act. On the one hand, I don’t mind going to bed a little earlier as a general rule, but on the other hand, I absolutely struggle with revenge bedtime procrastination. I feel like there aren’t enough hours in the day to refill my own emotional cup, and I know that if I don’t do that, the kids will be the ones to suffer for it because I won’t be able to engage with them the way I want to. 

Which is, after all, a big reason why I’m working on overall improving myself: to be able to engage better with my kiddos.

The next step is, I think, being more active. We’ve got a membership to a local gym/community center so that Sam can have swimming lessons there (Sam, by the way, HATES swimming lessons), and I want to start using their facilities either in the morning when the kids are in school or in the evening when the kids are in bed. I don’t know, though. Every time I try to start being more active, I end up failing somewhere along the way, and it frustrates me. The times I’ve managed to incorporate more activity into my daily life are times when it wasn’t a choice: when I had to walk ages to get to classes or walk to the store or things like that. Where we live now, walking is just not a thing that can happen. The roads have no sidewalks, and we live on a really steep grade, and while I could absolutely do that eventually, right now, it feels daunting. 

As does actually going to the gym. 

But I still want to try. 

That’s really the theme of it all. I don’t know if I’ll succeed, but I still want to try. I don’t know what the eventual outcomes will be, but I can’t really find out if I don’t actually make an attempt. And the attempt is scary, mostly because of the potential for failure, but. Well. 

We’ll see what happens.

Tired

/ lovescienceandnat20s / 1 Comment

I’m tired. And I’ve been tired for a very long time.

I don’t remember the last time I got a good night’s sleep, and I don’t say that in an overdramatic parent sort of way. We all have a hard time with sleep and rest as parents–the kids get you up in the middle of the night, you worry about them, they wake up at 5:30 a.m. for no reason. Parenting is exhausting.

But that’s not it. 

I don’t mean it in the daily grind sort of way. We get up and commute to work and subsist off caffeine. Our supervisors demand too much of us, and by the end of the work week, it’s all we can do to plop down in front of the TV and binge watch something so that we can have conversations at lunchtime. The capitalism grind is exhausting.

But that’s not it.

I don’t mean it in the school sort of way, where you stay up all night working on a paper or studying for finals and then hold your eyes open with tape the next day and crash afterwards, or where you and your friends are so wired after studying for those finals that you go to Dunkin Donuts at 3 a.m. in weird clothes to try and get whatever coffee and donuts you can to push through. School is exhausting.

But that’s not it either.

Everyone I know has dealt with those exhaustions, so I figured mine was just more of the same. It was easy to write off how tired I was when I was in high school–after all, school started at 7:40 a.m., and I was in AP classes and had extracurriculars and church and friends keeping me out late. And no, it wasn’t preventing me from getting at least 6-7 hours of sleep a night, depending on what I was doing, but of course I was tired then. And then college–the exhaustion ebbed a lot then because I planned my day around it. When selecting classes, I avoided anything earlier than 9:30 a.m. and kept my afternoons free for napping as much as possible. I did stay up incredibly late, but not so much that I wasn’t getting any sleep, and I still needed those naps in the afternoons, every day. But I wrote that off because, well, it’s college. Everyone naps in college. Right?

When I started working a regular 9-5 job, the exhaustion resurfaced. My first job, I had to leave the house at 7:15 a.m., at least if I wanted to beat traffic, and I was so tired that I kept making stupid mistakes on the job: filing things incorrectly, forgetting who told me what, that sort of stuff. Eventually, I left the job to substitute teach for a bit, and I always ended up at schools far away. I’d feel so tired during the morning commute that I’d have to slap myself to keep awake, and then I’d come home and nap as long as I could. I told myself that I was staying up too late or that I just had fucked up my circadian rhythm in college, because obviously, it was my fault, right?

And then I had kids.

And that didn’t help, because kids exhaust a person. At gentlest, they’re a lot of work. I blamed being more tired than the average parents on my being autistic, because all that sensory input and all that socializing at all times of the day forever is a lot. When I was working AND raising Sam, I’d reach the end of the work day and only have the energy to sit on my rocking chair with him and watch TV, to the great concern of both Kyle and Kat. They worried that me having another kid would result in more of the same, but for a hot minute, I proved them wrong. When the twins were little–not infants, but around the time Sam started kindergarten–we had a good time. We played all day, I was very tired but I could do stuff. 

And then the pandemic and then my spine and then everyone started school, and I thought I’d be less tired, but here I am. 

I’ve tried all sorts of explanations. The medication I’m on for my nerve issues does make a person pretty tired, so I thought maybe that was it, and that getting off the medication would make it so that I could get through my days without a nap again. The pandemic flushed my mood right down the toilet, and I figured that probably was a contributing factor. I had all of these reasons, and they finally came out when I talked to my prescribing RN a few months ago, frustrated that I was losing more than half of my day to sleep.

Because I love naps, but I like to take naps for pleasure. I like taking naps on days when it’s raining outside or crisp and cool or it’s gently snowing. I like looking out my window and letting nature kind of hypnotize me into a nice, relaxing sleep that doesn’t last too terribly long and makes me feel rested afterwards. These naps don’t make me feel rested. I think the last time a nap made me feel properly rested, I was fresh out of college and working just part time and dozing after work. 

So anyway, I talked to my prescribing RN with frustration, and she referred me to a sleep therapist, thinking the issue was that I had insomnia. And, I mean. I have had insomnia in the past. We all have nights of insomnia. Most of mine lately stems from achy legs when there’s a front coming through or else the general weight of “ah, neat, living through yet another major historical event.” 

BUT THE INSOMNIA WASN’T THE THING, AS IT TURNS OUT. Because my sleep therapist had me keep a sleep journal recording how long I thought it was taking me to fall asleep and how long I was sleeping, and as it turns out, I’ve been getting upwards of 7-9 hours of sleep every night, falling asleep within half an hour, and doing relatively well with the getting to sleep bit. And I’m even staying asleep, as far as I can tell, for most of the night, and that seems to have been the case for most of my life. 

So my sleep therapist and I both said, “wtf” and she ordered me a sleep study. I got all these components that I brought home with me and strapped to my body–one for my chest to register whenever I took a breath, one for my nose to register when air was coming in and out of me, and one for my finger to measure my pulse and how oxygenated my blood was throughout the night. 

AND WOULDN’T YOU KNOW. It’s not insomnia. It’s not me being lazy. It’s not me staying up way too late or being unable to handle life. It’s severe central sleep apnea, and it’s probably been with me for a very long time.

This isn’t the sleep apnea that you get when your tongue blocks your airway or your neck is just too heavy to keep your airways open. This is the sleep apnea you get when your brain forgets to tell your body “hey, maybe we should keep breathing” while you sleep. Rather than choking and gasping for air as your airway gets blocked by your tongue, and rather than being fixable with just losing weight or wearing a mouth guard, you just stop breathing. 

Which is bad.

Moderate central sleep apnea happens when you have around 30 incidents of not breathing in a one hour period. The night I was monitored, I had 40 incidents, and my blood oxygen dropped to 79% (which is, for the record, REALLY BAD). The pulmonologist I saw after and my sleep therapist both told me to really push the sleep center to get me in as soon as possible so I could get a confirming study that would also see what kind of titration (read: forcing my body to breathe when it doesn’t do so on its own) works best for me. 

A lot of people with sleep apnea do well with a CPAP machine, which forces air into your lungs at a steady pressure (set up during that in hospital study to see what pressure you need to just keep breathing while you sleep). Other people do better with a BiPAP, which forces air into your lungs at a harder pressure when you’re inhaling and a gentler pressure when you’re exhaling. And then there’s an ASV, which is a BiPAP that learns your breathing patterns and adjusts accordingly. And it’s all very complicated but necessary because my body cannot do this one very basic thing that it should’ve been doing consistently since I exited the womb.

I’ve got options, basically. And I’m looking forward to them on one level because I am so TIRED of being TIRED. It really is just an emotionally exhausting thing to be this tired all the time; you want to do so much and BE A PERSON, but you only have enough energy to exist. Even the things that are usually fun fall short because you’re too tired to put in the effort you want. 

But then I’m also scared because I’ve been this tired for so long that I don’t know who I am without this permanent exhaustion that feels bone deep. Am I going to turn into some sort of raging dictator who’s angry that not everyone is on my level of dragon slaying awakeness? Or will I just be the engaged and clean mom I’ve wanted to be for a while? Will I finally be able to kick my own ass into actual activity or will I just say “nah” and remain a blob but this time able to focus on things?

And THEN I’m frustrated that it’s taken this long to recognize that it’s a problem because I kept dismissing my own health issues and had them dismissed by everyone around me. Of course I was tired, high school and college are hard. Of course I was tired, I was going to bed at 10:00 every night instead of 9. Of course I was tired, I had hobbies outside of work. Of course I was tired, I had a baby and then two babies. Of course I was tired, I was working and raising a kid at the same time. Of course I was tired, there’s a pandemic on and also I’ve got a spinal injury and depression. Why wouldn’t I be tired? Or maybe I wasn’t tired, maybe I was just lazy. Maybe it wasn’t that I couldn’t physically muster the energy to clean and roll around on the floor with my kids and go for a walk and have hobbies and a life. Maybe I just didn’t want to put in the effort. Maybe I preferred to just dick around on my phone because effort is bad, and after all, I am just a lazy Millennial with a rebellious streak or something.

I internalized all of that. And when I think about how that kept me from actually getting diagnosed and treated for so long, it scares me and enrages me. My level of sleep apnea is so severe that it can cause brain damage and seizures; somehow, I’ve gone this long without that, but you can only stay lucky for so long. Since I found out the results of the study, I’ve been afraid to sleep because I know that it’s entirely possible that this would be the night I’m not lucky. 

And I’m furious that my exhaustion has been so easy to dismiss for my entire life, as me just being “low energy” or “lazy” or something along those lines. That it never occurred to me that anything about it was abnormal and that it was so easy to say, “oh, that’s normal.” It’s like when I had my gallbladder issues after Sam was born; I found it so easy to dismiss the 11/10 pain because the postpartum time is supposed to be painful, aches and pains are normal after you give birth, etc. 

But that wasn’t normal. And this isn’t normal. And I don’t know what it is about me that makes me so ready to dismiss real medical problems that I have, but I do know that I feel vindicated that I haven’t been lazy my entire life, that I may very well be able to handle working and having a kid and having three kids and having hobbies and writing and exercising and all of that. 

I’ve just been fighting with both hands tied behind my back.

A LOT TO TALK ABOUT

/ lovescienceandnat20s / Leave a comment

Hi, so life is busy.

Well, no. It’s busy but it’s also not. It’s fallen into this nice routine but I’m tired all the time, which is unpleasant and probably the fault of the nerve medication I’ve been on for a year at this point (more on that in a minute), but it also means that by the time I reach the end of the day, I’m a noodle who isn’t very good at writing things. And I have so much to update on and so much to talk about but again: noodle, living in a constant state of no bones.

So life. 

The kids have been in school in person for coming up on three months now, and it’s mostly been a pleasant time. We’ve had… mm, I want to say three Covid scares? Two that were everyone and one that was just Carrie. It’s a weird thing because I don’t like to send my kids into school sick anyway, but now in the time of Covid, you can’t just not send them to school sick, you also need to get them tested. And I am okay with that, just so we’re clear. It’s a pandemic, kids have only just started to get vaccinated, and I’d rather know one way or the other. 

BUT it does take a day home with a head cold to five days home because we couldn’t get in to get tested until 12 on Wednesday so the results aren’t back until 10 on Friday, so we’ve missed the last three days of the week plus the weekend, and by that point, all three children have gone completely feral and are jumping from couch to couch to couch to couch while scream singing “Grace Kelly” by MIKA.

Thankfully, our school has recently implemented a “stay and test” option for people who are just close contacts, but that does nothing if your kid has the vague “maybe it’s a cold or hay fever or Covid?” symptoms, so we just check everyone’s temperature in the morning and get really caught up in the mitigating circumstances of each and every symptom (e.g., our kids are hot sleepers, so if one seems warm but they were in bed all night, we wait another hour after they get up before doing a temperature check). 

Kyle and I are both triple vaccinated, so even with ominously named variants popping up all over the globe (seriously, if they’d just gone with Omicron from the start, I feel like this entire pandemic would’ve been taken a lot more seriously. Like I’m not saying that Covid isn’t a threatening name except it very much is not a threatening name), we’ve both felt comfortable and safe enough to go to the movies again and go out to dinner again and mostly resume our normal lives, sometimes with masks and sometimes not. And despite the handful of Covid cases in our schools, both of us feel pretty safe about our kids being back in person (and all three have IEPs, so even if schools went remote again, they’d end up taking the in-person option anyway, whee). 

Being back to school in person has benefitted Sam so very much. We weren’t sure how he’d take to it, since it was a full year away, but the phrase “like a fish to water” comes to mind. He picked up right where he left off with his best friend Hunter, and he’s made new friends (Declan and Eamon) in his class. His teacher has nothing but good things to say about him, even taking into account his reluctance to put away his scissors sometimes and his adorable motormouth tendencies. He comes home constantly with stories about the games he played at recess (apparently, Among Us is popular with the kids these days, which… okay, cool, it’s literally just Mafia, but cool) and the time he spent with his friends, which is enough to make my heart feel warm and mushy, but THEN you add in that he got the highest scores on their classroom testing in math and ELA and I’m just. Beyond proud. Is there a way to be beyond proud, because that’s me. I’m beyond proud.

I also feel a weird sense of pride because, as it turns out, Sam is also autistic.

Roughly around this time last year, his therapists asked us if we’d ever had him tested, which we hadn’t. Sam and Isaac are both similar in that, while they’re both definitely autistic, they’re also both really social kids. They like to make friends and be involved with other people, but where Sam was in daycare from the time he was a year old, Isaac was home with me. Isaac was also notably delayed from the start because he was a preemie, whereas Sam would’ve just stayed in for the next ten years if the doctors had let him. 

Anyway, we didn’t ever have Sam evaluated for autism because he’s such a social kid, and he learned from very early on that socializing means eye contact and it means language and it means doing things that autistic children typically aren’t seen doing. He had his pickiness sometimes and his need for routine, but we figured that was just typical toddler stuff. 

And then the pandemic.

And a fun thing with neurodivergence is that when those of us who fall under that umbrella get stressed, we don’t mask as well. Our divergences become more and more apparent, and as a result, people start to notice. 

The pandemic was stressful for everyone, and it was particularly stressful for Sam, who had his routine and life upended overnight and never quite found his footing again. Early on, we had him seen by one therapist who recognized that he has ADHD (both inattentive and hyperactive type, because we like to cover all bases here), and once he started receiving in-person therapy, his new therapists agreed with that and said that he also seemed to be autistic.

SO. 

It took a whole goddamn year to get him an evaluation because everything is absurdly backlogged and you can’t do an autism evaluation virtually. We went for the first available slot in Boston, and an hour and a half later, the doctor said, “Yep, autistic” and sent us on our merry way with a bunch of emails and links and information and suggestions about therapies and what-have-you. 

And, real talk, Sam is excelling so much in so many ways that I’m not super interested in pursuing therapy unless he asks for it. Talk therapy, sure, because I think that helps a lot with a lot of things. But ABA (gag)? Anything besides the OT he already gets? Nah. I think he’s doing pretty well on his own, and the diagnosis mostly just gives us a tool and a shield that we can use to say, “okay, because of this diagnosis, you cannot deny him services.” 

(not that our school district WOULD HAVE denied him services, but just in case)

Anyway, he’s doing SO well that we’re actually shifting his services to an “as needed” basis, meaning that he’ll still have the help if/when he needs it, but he’s transitioned so smoothly and is doing so well that we don’t need to force it on him. And my god, he’s happy again. Last year, it was like a cloud over him, but this year, the sun’s back and it’s so beautiful.

My health is also on the docket of things to talk about. A year ago this weekend, I was in the ER with nerve pain so bad that I couldn’t do anything but scream and shake, and in a logical world, they would’ve pushed me through getting an MRI and surgery ASAP because nerve pain that bad is a major red flag for nerve injuries that could become permanent damage.

But.

I got sent home with meds, celebrated Christmas and New Year’s, then saw a doctor in January. The doctor said it sounded like a herniated disc but I’d need an MRI to be sure, but the next available MRI appointment wasn’t until March. I would’ve taken that appointment, but it fell on the same day our insurance rolled over from one to another (not that the new insurance covered the MRI anyway?), so the MRI got pushed out to late March. Then I saw the doctor again in April, and he gave me the option of either getting injections to ease the pain while the nerve healed or having surgery. I said I wanted surgery, so I got to see ANOTHER doctor in May, and we scheduled the surgery for July.

So it’s already been eight months with this injury and things not really getting better, right? And then Kyle’s company laid off his entire department literally two weeks before my surgery and we had no insurance, so I had to postpone the surgery to August. And THEN we were in this kind of song and dance with MassHealth, where nobody was really sure if we’d be able to stay on it once Kyle received his unemployment payments (note: we still have not received unemployment payments), so we postponed the surgery indefinitely until Kyle got a new job and we were on that new insurance.

September rolls around, and Kyle gets his new job and good new insurance, some of the best we’ve ever had. I call to make a new surgery appointment, but first, I need a new MRI because it’s been, at this point, six entire months so who knows what’s going on in there? And I pay roughly the same for the new MRI that I did for the one with the shitty insurance, but whatever, right?

Within 24 hours, the doctor calls me back and says, “hey, you have zero herniation left. I’d do surgery on you, but it would be pointless because there’s nothing to remove. All you have to do is just wait for the nerve to no longer be inflamed.”

To get a clearer picture, I ask, “But what about the fact that I cannot feel anything on the inside of my left thigh and also at least two and possibly three of the toes on my left foot take a good thirty seconds more to get the message that I want to move them than the rest of my foot?”

“Oh, well, those are probably permanent, but in 90% of cases, the pain goes away completely within a year of pressure coming off the nerve.”

SO LET ME GET ALL OF THIS STRAIGHT. Because of insurance issues, I had to wait and wait and wait and wait on my surgery to the point where I’ve now been left with permanent damage and pain that has an okay chance of disappearing completely but nobody is really sure when that will happen?

I’m on this nerve medication, gabapentin, that makes the world completely fuzzy. I’ve been on it for a  year. You’re not supposed to be on it more than a few weeks because it makes you sleepy and messes with your memory (not permanently, thankfully, just while you’re on it). I don’t know when I can come off it because I don’t know when my herniation stopped pressing on the nerve because I had to keep putting off the surgery again and again and again.

And like. I don’t want to get into it about universal healthcare, but I’m pretty sure that my waiting would’ve been cut in half if I hadn’t had to change health insurance five times in the last year.

Whatever. I have an appointment on December 13 to talk to the surgeon and discuss my options. I want to see if I can get hydrotherapy of some sort to try and take some pressure off things, and I really just need to find a decent and quiet gym and go there in off hours to walk and slowly bring myself to a healthier level of activity. I’ve been in so much pain the last year (and still am sometimes) that activity feels daunting, but I need it to heal, and I need to find a way to do it that won’t scare me away. 

Meanwhile, I’m just keeping myself in a floating state of planning mode. Planning Halloween (Sam was a ninja and the twins were Spider-Man and Ghost Spider). Planning my birthday and a trip with two of my best friends to Cape Cod in the off season (was delightful but also very cold). Planning Christmas. Already thinking ahead to the twins’ birthday. Planning road trips. Planning planning planning. 

Planning that extends kind of far out as well, but only kind of. 

Kyle’s new company has some really great insurance, you see, and through it, we were able to cover PGS for our remaining embryos from the cycle that gave us Isaac and Carrie. Unbelievably, six of the seven embryos were healthy and there are exactly three boys and three girls.

Which brings us to the age old question of WTF are we going to do with all of these frozen babies?

I want one more. Not twins, please god not twins. I love the twins so much, and about 50% of the time, I love that they are twins (the other 50%, they are beating the ever loving shit out of each other for reasons that I do not understand, so I’m like, why couldn’t you be born one at a time so we’d have some buffer space?), but I physically could not do twins again. But I’d love one more girl as a coda.

BUT not for a while yet, if we did. Kyle isn’t fully onboard, which is fair because the twins are a LOT right now, and if someone dropped a baby in my lap right at this second, I’d be like, “WHY DO YOU HATE ME SO MUCH????” because I cannot infant right now. If we went ahead with one last transfer, it would be in 2023, no sooner. Too much is going on in 2022, and my health isn’t where it needs to be.

But it’s on the table now, and we didn’t know if it was on the table before. It was a daydream and now it feels like it could happen? I don’t know if it actually will, but it’s there. One last girl. 

Maybe.

Or maybe a puppy instead. I don’t know.