You may think my goal is to get better, it’s not, I’m concentrating my energy on not getting worse. Most illnesses start out strong and then fade over time. When you get a cold, you have those couple days of being miserable and then a few more days of sniffles or a lingering cough. Chronic illnesses aren’t like that, they ebb and flow over time. My pollen allergies do so predictably, every spring I get worse and then in the summer I get better. Myalgic Encephalomyelitis (ME or also ME/CFS) is different still, it’s really easy to get worse (by pushing your body to do more than it has energy for) and incredibly hard to get better (extensive rest and magic – aka science we don’t yet understand). My Long Covid has become ME (by meeting a few criteria, particularly passing the 6 month benchmark) and it’s the reason that it’s so important to rest much more than you think you might need to after any covid infection. I’m not convinced you can avoid long covid, but this post will demonstrate what has happened each time I’ve pushed my body too hard. I only have mild/moderate ME. People with severe ME are not only bedridden, they also can’t handle any stimuli (light/sound). The physics girl has been public with her experience with severe post covid ME. So, my goal first and foremost is to not get more severe (which is not to say it was anyone’s fault who has severe ME that they got to that point, only to say that since I’ve been lucky enough to not have it yet, I’m trying to stay that way). Then, as my body lets me know that I have the capacity, I will start working my way toward feeling better.

I wrote about both times I crashed (times I overdid it enough that I got significantly worse for a few days) shortly after they happened. Then I’ll share a summary of how each crash impacted my baseline and what’s happened since.

October 20 – 23, 2022

This weekend is my first long covid crash. I’m in the sweet spot where my kid is old enough and my parents are young enough that I don’t need to be caretaker for anyone but myself. That’s the only reason I’ve been able to rest sufficiently to avoid crashing before now. I had enough rest stockpiled that it took a brutal combo to knock me out:

• Puppy was sick and woke me up at night. (x3 nights)
• Went to the vet during my usual morning nap time on Friday and had a doctor’s appointment in the afternoon so that nap time was out too. 
• Took non-drowsy Sudafed before bed Friday night, did not realize that my body would take non-drowsy to mean “you will not sleep” (I’m particularly sensitive to stimulants like caffeine), and in my fatigued state took another Sudafed in the morning so I didn’t nap Saturday either.
• I was menstruating.
• There was bad weather and pressure changes impact my symptoms.

The weekend-long crash involved vomiting (previously I’ve had nausea but this was the first time it progressed), feeling dizzy when standing (new symptom), and feeling weak (worsened symptom). 

I can’t blame the puppy, and the poor guy suffered some consequences because I wasn’t able to take him for as many walks. I had to ask for help getting him out as often as he needed because I felt unsteady going down the stairs to the yard. We found new ways to play where I got to rest and he still had fun.

That weekend was the onset of my POTS (Postural Orthostatic Tachycardia Syndrome). The long covid clinic had previously told me to hydrate and increase my salt intake, which I’d been doing by drinking a ton of water and eating some extra Pringles. Until that point that was sufficient. After that weekend a stack of Pringles was not enough salt (100 mg sodium per 10 chips) – I got clarification from the long covid clinic and learned I needed at least 3,000 mg sodium per day. Switching to electrolyte drink mixes got me there and I was able to stabilize the new symptoms so I occasionally felt light headed, rather than constantly being dizzy and unstable whenever I was upright. Present day Tina is still light headed when standing, and now that it’s summer it can take more than 8,000 mg of sodium for me to retain sufficient liquid to get blood to my head. (Some future post will share more about my journey with POTS, and it has indeed been a journey.)

January 26 – February 6, 2023

Thursday January 26, 2023 I had my third acupuncture appointment. The first appointment I was hopeful this would really help me, someone who was thinking whole body rather than one specialty at a time, and after the appointment I got home and took a deeply restful nap. One characteristic of ME is that sleep isn’t restful. I often wake up in the morning feeling more fatigued than when I went to bed the night before. However, that first acupuncture appointment also brought a lot of the pain that I’d tuned out back to the forefront. I went back and told the acupuncturist that he had to fix it since he broke it. He hasn’t figured out how to do that yet.

Friday I drove to Vermont to visit with college friends and drove home Jan 29. I planned out my trip with my occupational therapist so both drives were done midday when I’m most alert, I stopped half way to take a break (at a McDonald’s so I could get fries and a soda to hydrate and cap up my sodium) and stretch. My friend I was visiting was great about checking in with me, I told them ahead of time what I needed, and I successfully went to bed early and took rest breaks during the day. 

Despite my best efforts, I still crashed when I got home. 3 days of extreme exhaustion (sleeping 14 hours a day, when I usually need 10). Followed by a few days of pain preventing restful sleep. February 7th was the first day I had the energy to do things again.

I haven’t tried to drive that far since then. Which means that my parents have driven to visit me, and once to pick me up to visit them, because I’m scared to test that limit even though I quit acupuncture shortly after that. (It turned out my acupuncturist was using too many needles and further overwhelming my already overwhelmed system. I do plan to try acupuncture again, at a new location, in the fall.)

The next drop in baseline wasn’t a crash but was due to a medication change. The whole story is complicated but suffice it to say I learned in April that propranolol is essential to my current level of functioning. While I was off the medication I was hyper aware of every heart rate spike – I really did not want to get worse. So I didn’t push myself at all, which was the correct choice, and still resulted in a decrease in functioning. I had been going to physical therapy and very very slowly increasing my strength and cardio (I followed the Levine protocol but went even slower than that very gradual plan). Once I got back on the medication I had to start back at zero. It’s August and I’m still not doing cardio on my rowing machine yet, so far I’m using it as another gentle strength exercise. It will take months to get back to where I was (which wasn’t particularly impressive, and because of my POTS included only seated or reclined exercises). 

The most recent drop in baseline was also a medication change. This one came as a surprise! Some antidepressants are used at low doses for headaches. I tried taking Cymbalta but it didn’t make any difference so after giving it a solid try (4 months) I went off it. Even with the low dose I’d been on my doctor was extra careful and had me decrease the dose before quitting entirely. I noticed that my POTS symptoms were worse, in particular I’d never had the experience where raising my arms over my head caused light headedness, even though many people with POTS have that experience. I’m now among them! I’ve been completely off Cymbalta for 2.5 weeks but that new symptom seems to be here to stay. It took me a while to connect the medication with the symptom, because it’s a medicine I took for my headache, that I know is used for depression, neither of which have anything to do with getting dizzy when I pick my arms up! Because I use an app to track medications, and I remembered the date that the symptoms started (the night before my one year covid-versary) I was able to throw that connection out in my family group chat. And because my family group chat is composed entirely of people who had/have careers in medicine, I heard back that going off SNRIs (which Cymbalta is) can cause Orthostatic Tachycardia (the OT of POTS). My sister-in-law is a neurologist and so she’s used Cymbalta for headaches before, she’s never had a patient experience the orthostatic tachycardia and says it’s really only listed as a withdrawal side effect for people on much higher doses than I was. 

That’s how sensitive my body is right now. If there’s a possibility, I will experience it because I’m that unstable. So for the foreseeable future my primary goal will continue to be: don’t get worse!

[I started this post in July and then lots happened. I’m working on letting go of my expectations for this blog and hope to start posting shorter and more informal things rather than creating a backlog of half written posts in my brain!]

July is disability pride month. The Americans with Disabilities Act was originally signed into law on July 26, 1990. This flag was first designed in 2019 and then redesigned in 2021 to be more accessible to people like me who have vision challenges. They changed the colors from bright to more muted and moved from a zigzag to the simpler design you see here. 

Note: yellow also includes learning disabilities and cognitive impairment

Learn more about the history of the ADA by reading the book Being Heumann, by Judith Heumann who sadly passed away earlier this year. 

In the intro post I said “I’m not new to being disabled, I am new to being so significantly disabled. My health has been and continues to be a significant part of my identity.”

Different people interpret disability pride in different ways. I can imagine most able-bodied people wouldn’t understand why anyone would be proud to be disabled. For me, it’s not about being excited to have my disabilities, instead it’s about not experiencing shame around them.

I spent the majority of my teaching career focused on supporting students with disabilities in both inclusion and contained classrooms. (Inclusion classes are ones that are all the regular grade level content, with a mix of students, and sometimes the content teacher – me as the math teacher – is joined by a special education teacher. Contained classes are made entirely of students with disabilities and may be a specific type – I’ve taught both autism spectrum and language based classes – or a mixed set of disabilities all at the same place in content.) In fact, I did some of my pre-practicum hours in a school entirely for students with disabilities. I’ve seen the full range of students who are well-versed in their needs and can advocate for themselves to students whose parents have largely pretended that their disabilities don’t exist. 

My parents didn’t have to make that choice because my first disability was allergies and I needed to know how to ensure that I did not eat peanuts, so there was no decision about whether or not to educate me on my needs. Different disabilities are accepted to drastically different degrees, there’s very little stigma around a peanut allergy in the current era while people with cognitive disabilities are too often excluded from conversations about their own life choices. By the time I was a classroom teacher I had multiple diagnosed disabilities. People see basic vision challenges that can be corrected with glasses as a normal thing at this point and my pollen allergies are less relevant in the fall when school starts, so I used my hearing loss as a way to model to students how to communicate about disabilities and advocate for accommodations. On the first day of school every year I would invite students to fill out a short survey, sharing information about themselves that would be relevant to their learning, and also would be a way to compare how they felt at the beginning of the school year to the end. At the end of the survey, there was a question that asked, “Is there anything else that you want Ms. Cardone to know?” I would model the types of responses that I would like included there by saying,

“I would like all of you to know that I cannot hear out of my right ear, so that means when you call my name I need you to both speak up and also wave because I will hear someone say Ms. Cardone, and then I will have to scan the entire classroom to try and identify which voice it was that just called to get my attention. So it’s much easier if you’re making eye contact and waving me down.”

This empowered some students to share information about themselves that would inevitably be useful, and I suspect most of them would not have shared it on day one otherwise. 

I spent the rest of the school year encouraging students to self-reflect on what they needed in order to be able to learn – mathematics in particular, but also more generally. I learned a few years ago that most people see images in their heads when they think about things, and my thought process is entirely verbal. I have an internal voice, and there are no internal images. Turns out this is called aphantasia and people with aphantasia tend to have a poorer memory than other people do, so I would frequently speak to my students about how I needed strategies to remember things, and using strategies was not cheating. The strategies that I used for my memory supported students with executive dysfunction along with students who needed the memory support.

Okay, so what was the point of this post? Right, disability pride. I hoped to teach my students in the classroom that a disability is not something to be ashamed of and each of them has different needs when it comes to navigating through the world and certainly navigating through school. 

Additionally, my allergies are often my go to fun fact about myself at a social event, because they tend to make me unique. Everyone enjoys listening to the story of the baby who was born allergic to milk, including breast milk, formula and any of the types of milk that were available in 1985. Through the miracles of modern medicine I was able to drink a pure amino acid mix. It was green, and my parents felt very guilty. They worried other people were judging them for feeding me green goop as a baby but they got me through and I made it to childhood where I learned to swallow pills at a very young age because steroids don’t come in chewable form. I skipped out on a lot of the ableist unlearning that my peers have had to go through because I needed medication to survive from a very young age and it was never a question of whether or not taking medicine was healthy or natural. It was necessary and so I happily did it. I also proceeded to do 10 years of allergy shots before leaving for college and got all of my vaccines because both of my parents came from the field of medicine and knew the importance of vaccinating the population.

In a future post, I will share how my energy limiting chronic illness of allergies defined the hobbies that I chose, and those sadly are no longer accessible to me, but I am continuing to adapt and adjust. It has at least been a smaller adjustment for me to add on additional energy limiting conditions than it would be for someone who was an extroverted, active person prior to getting Long Covid. I have many of the skills that were already required which may be part of why I’ve been able to move quickly from diagnosis to acceptance to pride, and being ready to share publicly both in my Long Covid community groups, as well as with a broader audience. In particular, having an audience of educators feels like an important audience to reach, because schools are jam packed with humans in small spaces, which is exactly how this virus likes to spread. The impacts of Long Covid are going to be extremely visible in some cases, but more subtle in others, and I hope that I can help educators identify challenges that they and their colleagues are facing as well as those of their students.

To read more about my thoughts on connecting hearing loss with education check out this blog post from a previous job

What questions do you have about disability? I am planning a “terms to know” post at some point. Are there words or phrases that I have used or you’ve heard others use when talking about Long Covid or any of my conditions that you’d like definitions for?

I’m lucky to work at a job with a generous sick leave policy, including a COVID specific policy that enabled me to take (even more) time off for caretaking as well as being sick. I stopped work July 26, 2022 because my pregnant sister-in-law and my 13 month old niece were both sick. Then I got sick July 28, 2022. Between caretaking and then getting my period just when my (initially mild) symptoms were clearing up, I only checked slack on my phone occasionally to keep everyone updated.

The first time I tried to do work beyond checking slack messages was August 8, 2022. I got a headache almost immediately and nausea soon after. I texted my friend who has had long covid for years and she just wrote back “fuck.” That one word set off the entire rest of this story. At some level I knew at that moment that this was going to be a long haul, whether anyone was ready to officially classify me as a long hauler or not. (The Boston long covid clinics say you have to be 10 weeks out from infection and still have symptoms to qualify.)

I’ll share the evolution of my headaches and vision problems in tweets. 

August 11

I’m still not able to stare at a computer without getting a headache (and nausea if I keep pushing myself). I hate that everyone is left to their own devices. There’s a collective responsibility that shouldn’t be left up to individuals to determine. We all will suffer as a result.

August 18

Today marks 3 weeks since covid symptoms started. FYI if you feel like it’s taking forever for your symptoms to subside it’s probably because covid sucks. It may be because covid sucks AND you have a secondary infection. Thankful for antibiotics helping with the sinus infection.

Currently accepting fun, light podcast and audiobook recommendations. Looking at screens still hurts. I need distractions because thinking about it makes me hate everything.

Note: That was the first time I went to the doctor complaining of a headache. Their best guess was sinus pressure and so we went with antibiotics. I’m not sure if I actually had a sinus infection or I just felt better because I did a better job resting after this (I’d planned to go on vacation so I took the week all the way off work even though I didn’t end up traveling).

August 24

Sooooo what do people with #LongCovid migraines DO? I’m the kind of person who usually watches TV *and* does a puzzle or crochets or scrolls. All of those currently give me a headache. Listening to an audiobook and petting the puppy is good, but mostly he likes his own space.

August 31

Finished listening to The House In The Cerulean Sea. It was great! What other audio books do you have for me? (Yes, tomorrow is 5 weeks since covid symptoms started and I still can’t focus on anything without causing a headache. Stay safe out there friends.)

September 10

Organizing closets is on my very short list of “things that don’t make me feel sick.” Today I tackled the pile of things in the office. Y’all. Just reading enough of the papers to make piles (condo, medical, work) resulted in feeling so sick I needed a 1.5 hour nap. I hate this.

September 22

8 weeks since covid symptoms started. I’ve listened to 12 audiobooks. I’ve taken 11 different medications. I still can’t work. I’m having a “looking at the phone at all hurts” day. Puppy and I are curled up with a fuzzy blanket listening to the thunderstorm and trying for hope.

September 28

In today’s episode of “wtf did covid do to my brain?” we have ‘sorting silverware from the dishwasher increases headache.’

Tomorrow is 9 weeks, one more week and I’m eligible for the long covid clinic.

I got sick peak summer, 🤞 I’m back to work before peak fall.

This one really is mind boggling. 

Spend an hour chatting on the phone: no pain. 

Take the pup for a walk and ensure he doesn’t ingest sticks or anything toxic: no pain. 

Glance at a piece of metal to decide if it goes in the big fork slot or the little fork slot: headache!

This is a genuinely interesting question to me. 

Why can I listen to a book but not read a book? 

Why is scrolling Twitter sometimes okay but reading on my computer never okay? 

Why can I play nonograms most days but not sort silverware? 

What exactly is my brain protesting?

As more time passed I found more answers to these questions. I don’t have solutions, writing this still increases my headache level, but I do know why!

By the end of October I knew that Twitter (and my phone in general) was in dark mode while the computer was not. The bright light caused pain. That issue is called photophobia and is common with migraines. 

In April someone on the long covid slack community asked about headaches and I was surprised to discover I could name 5 different types of headaches and their triggers. Of note, I only ever had a sinus headache before covid, and even that was rare because I’ve always been generous with my allergy medication! 

• POTS – when I sit or stand up and blood isn’t reaching my head, it hurts. This tends to be more pain at the top of my head. Before I started my hydration routine it felt more like pressure than pain. 
• Vision – I have a convergence insufficiency and so trying to focus my eyes hurts. I actually have double vision all the time, my brain is pretty good at filtering out the extra info when things are far away, the closer things get the harder it is. This feels more like a tension headache and I can feel the small muscles on my face straining as well as general pain on my head and neck. 
• Concentration – this one feels more like a traditional headache I think? Mental or emotional exertion can lead to headache. 
• Congestion – sinus headache
• Referred pain – feedback loop between tension in my neck/shoulders/back and head pain

I’ve seen 3 neurologists at 5 appointments. Plus a nurse practitioner and my PCP at… many more appointments. They’ve prescribed 9 medications, 4 of which I’m currently taking. I tried acupuncture, vision rehab, and prism glasses. I’ve had two MRIs. I’ve learned all sorts of new words like allodynia (it feels like my scalp is bruised even though I didn’t injure it) and occipital prominence (the base of my skull where the back of my head meets my neck, this is a frequent pain point). 

So far there are 3 medications that successfully decrease pain, one I take at night so I can sleep, the other two allow me to exist and use my phone during the day without provoking too many symptoms. The fourth one I just started and I haven’t noticed any difference yet. Headache medications are all guess and check. One is a low dose of an old antidepressant that isn’t great as an antidepressant but it works well for headaches (amitriptyline). Another is a low dose of a medication used for people who are addicted to opioids (naltrexone) that works for inflammation more broadly. The third helps with my POTS, so it helps with the POTS headache, and is also known to help with other types of headaches (propranolol). The new one is a low dose of a seizure medication (divalpro) and currently I’m on an even lower dose than the dose that helps with headaches, I will increase in another week and then decide if it’s helping once my body has adjusted to that dose. 

I’ve enjoyed learning the science of how my eyes (don’t) work together and how different muscles and nerves are interconnected. More on all of that to come!

I’m generally a “live in the present” person. I don’t spend too much time dwelling in the past or being anxious about the future. My bucket list in college consisted of seeing the redwood trees in California, which I did many years ago, so my bucket list has been empty since then. All of which to say, I’ve spent most of the past year living in the current moment, largely out of necessity because it felt impossible to plan for the future when my present was a revolving set of specialists throwing new diagnoses and treatments at me on a weekly basis just to see what might stick. It’s hard to plan for a future when I don’t know how many hours a day I’ll be able to remain upright (I was down to 3 in April – nothing gets done when you only have 3 hours of sitting or standing per day). 

However, while living in the present serves me most days, I need some joy in my life to look forward to. Otherwise, what’s the point of getting through the current moment? And I also need to allow myself to grieve. I’ve been in a POTS flare since July 27. I’m much more unsteady than usual despite carefully tracking water and salt and wearing my compression gear and the weather eventually settling and pacing so so so carefully. So today’s theory is perhaps my body is grieving the anniversary that I haven’t allowed/forced myself to stop and take the time to focus on. You’d think that would be unavoidable, but I’m very good at having an audiobook going and playing a game on my phone simultaneously so there’s no brainpower left for other thoughts. 

The rest of this post is going to be a stream of conscious post of things from the past year to grieve. I know I’ll have silver lining thoughts as I generate this list, but I’m not going to write them down today.

• Writing hurts. I’m trying a new method and I can feel the muscles around my right eyeball twinging, while I’m not even using my eyes!! I’ve clamshelled my laptop and am using touch typing, apparently while it feels automatic my brain is still working because now I’m feeling the tightness around my jaw as I concentrate on typing. 
• Dictating is obnoxious – I still end up looking at the phone to make sure that the words are being transcribed correctly and it’s hard for me to think as fast when I have to talk out loud. My inner voice is a lot speedier than my outer one!
• Typing on my phone, and using my phone generally is physically painful in the way it always has been – I use my phone too much and so I have a repetitive stress injury in my thumbs, there’s a giant knot of muscles there, it’s not great for me and also at least that’s a pain I’m used to? Wait, no silver lining, just, ow!
• I haven’t watched TV, or youtube, or a movie in a year. That’s the thing you’re supposed to do when you stay home sick, watch minduless television. Television is the opposite of mindless for me, it’s overload. Even just listening to a show (audio description or not) is more than my brain can process. 
• My poor puppy, he never gets to go on adventures, he’s never gotten to learn that adventures are fun because he was an anxious puppy and we hadn’t gotten past that before I got sick. He also doesn’t get his teeth brushed and I haven’t desensitized him to getting his nails clipped so I bring him to a groomer, he also only gets a bath twice a year at shedding season because I’m not doing that and I’m not paying for someone else to do it frequently (thank goodness for low shedding and sleek fur that the dirt rolls right off of!)
• Being disabled is expensive – I have a whole post planned on this – Brownie goes to daycare twice a week because I don’t have the energy to take him to training or to a place he can run or even to playdates, I fell out of touch with both his doggy friends. 
• Getting pet supplies and caulking supplies and most everything I need delivered costs extra to both my bank account and the environment – so much packaging!
• I’ve had to budget this year, in the past I kept track of my money in a spreadsheet because that’s the kind of thing I consider fun! I like seeing where my money goes, but again with the living in the present – I’ve always lived well within my means and so I haven’t had to pay attention to how I’m spending or set goals. Dropping down to 60% of my paycheck (what disability insurance covers) is a huge jump! I’m no longer tracking just for fun. I have to budget for super fun things like compression socks. 
• I keep trying to work and there keeps not being much I can do. I started transitioning from all the doctors appointments all the time to having more space in my life for work in the spring, right when my allergies ramped up and I had to go off my one medication that was really helping.  By the time I got some books lined up that I could read for work I was in a flare and couldn’t concentrate on a serious book. Now that I might possibly finally be ready to do something, there’s not a whole lot for me to do. I’d love to run a project instead of my regular work (because I can make an agenda and lead meetings, but can’t edit documents or upload data) but that only works if there’s a project that needs running!
• There’s almost nothing fun I can do. Being off work and getting to spend all my time at home sounds like summers of years past, except for now I can’t go hiking, or crochet, or visit the farmers market, or cook new recipes, or go out to eat with friends, or play mini golf, or read a book (on paper), or do a jigsaw puzzle, or play a board game. I can’t go visit my friends that live in nearby states who I usually see every summer, and if they visit me there’s not a whole lot I can do, as I just mentioned. 
• I haven’t been able to do any updates on my condo – either I’ve had to pay someone else to do them or they’re just not getting done. I bought this place just a few months before I got sick. My bedroom is a rather neon shade of green. I spent a bunch of time imagining how I might redesign it, and have no capacity to follow through. The caulk in the kitchen and bathroom are gross, I’m only going to replace the caulk at the bottom of the shower door because it’s leaking after I tried to wipe away the mildew and accidentally wiped away the caulk too. It’s only getting done because leaking water all over the floor is dangerous. Phase one caused lots of symptoms so I’m currently avoiding doing stages 2 or 3. 
• My brother’s kids are growing up and I’m not able to see them. I was getting to see the first kid every 2-3 months before covid. I did get to spend a solid 3 weeks with them while we all got sick and recovered, and then I’ve been on a once every 6 months schedule since. Not even. December to August is 8 months. I’ve only met the baby once, the week she was born. It’s not just that I’m not visiting, I’m also not able to facetime, so every time I hear that the littlest is sitting up or starting to crawl it creates cognitive dissonance because in my head she’s a newborn!
• I haven’t been able to continue hot yoga with my colleague or restart pilates with my daughter, I can’t do yoga or the cardio dance videos I have saved or even the standing arm workout. Everything is lying down or maybe seated and every action is calculated for maximum benefit and minimum harm. 
• I’ve gotten poison ivy multiple times. If I had the energy I would’ve gotten rid of it. Even if I didn’t get rid of it, weeding in 15 minute increments means more opportunities to accidentally touch it and then touch exposed skin. I would’t be surprised if I’m also more sensitive to it now. 
• My allergies are so so so much worse than they were. 
• My head hurts, all the time. 
• I’m grumpy with everyone, there’s no well of patience to be a good parent, my friends feel bad unloading what they’re going through because they know I’m going through a lot, and then I feel bad for not being able to be a supportive friend
• It’s so exhausting to have to tell my story over and over and over again, every doctor wants a full recap, and then proceeds to ignore 95% of the information to treat (or tell me it’s impossible to treat) their one area of expertise. 
• Needing help with things means they can’t occur on my timeline and they take three times as long because I have to explain what’s in my head and how I want something done, and then confirm that it’s been done correctly, all while trying not to look at the thing. 
• Emotional exertion counts towards my spoon allotment for the day so I’m crying my way through this post instead of getting the caulking done or playing with the dog who is bored. 
• Insurance companies are so much work to deal with, I cannot begin to tally how many hours I spent going back and forth between one office and the insurance about an error the insurance made. 
• I never used to care that much when work changed the insurance options, open enrollment is now a major ordeal where I have to solve several modeling problems and it’s not that fun. 
• I missed a year of Jenna’s kids lives, I missed most of the year of most people’s lives. 
• I don’t have energy to advocate for anything other than my own needs. 
• I wanted to start editing Nix the Tricks again. This was the first year I didn’t have any contract work (thank goodness I didn’t have to bail on anyone) and I didn’t get to spend any of it doing personal passion projects, I’m not counting learning about all my medical conditions as a personal passion project. 
• I didn’t step foot inside a school for an entire school year. That hasn’t happened since I started preschool. Wow.
• I don’t have the energy to find a good therapist, so I ended up with one who couldn’t remember anything about me at our third session, quit, and now have to come up with therapy activities like this by myself.