#starting to think this nausea and anxiety might actually be from the new med dose not a purely emotional thing. great

[phagodyke]

survived the meeting 🫠

[albatris]

ik this is probably an inappropriate question to ask but i deal with stpd and just recently discovered this. Previously thought it was just depression/anxiety but ive been on like 7 antidepressants/2 of which were more geared towards anxiety. I was wondering if you take any meds or have any advice you might recommend. Id really appreciate it. Im running out of ideas lol.( Sorry to bother and thank you)

nah you’re all good, I don’t have any problem with questions like this n I’m happy to share any experiences of mine that people might find useful!! though in this case idk how much help I’ll be, sorry D:

mostly about meds but my bad for goin on a whole ramble in the middle about therapy?? I talk a lot and have trouble staying on topic

'cause meds n therapy both have been useful to me but both probably would've been pretty useless without the other

under cut for personal rambles

so I was in the same boat as you for several years, I was in treatment for depression and anxiety and then borderline later on, way way way before anyone landed on schizotypal

as such I’ve been obviously dealing with stpd symptoms for basically my whole life but I only got diagnosed early last year n it’s the first time I’ve been. like. actually in any sort of therapy that addresses it properly and I’m still getting a feel for it

in terms of meds, I’ve been on a whole slew of different antidepressants, didn’t find one that worked until I was maybe 18 or 19? so I’ve been on the highest dose mirtazapine since then....... helps with that kinda baseline anxiety background hum, helps with obsessions and guilt spirals..... I didn’t think it did much for depression until I tried coming off it??

like, it gave me a slight boost in terms of energy and motivation, not a huge one, but definitely noticeable once it was gone

but yeah, it was kinda..... yeah, this med is about as helpful as I’m gonna get, so I decided to stick with it. I recently have considered coming off it ‘cause the sedation was a nightmare, but that’s on hold for the time being

I’ve been on two different antipsychotics, first quetiapine, which did absolutely nothing and was even more sedating on top of the mirtazapine, and currently I’m starting on aripiprazole. still on a super low dose, but working up to something that will hopefully ease some psychotic symptoms. side effects of insomnia and nausea but eased off mostly after the first week

but yeah, I haven’t really had much experience with antipsychotics or how helpful they are yet, atm I’m gonna wait and see whether there’s any real positive effects

but meds are super hard to give advice about, ‘cause different ones work for different folks, what works for me might not for you, what works for you might be something I tried and hated, etc etc etc, y’know

honestly the most helpful thing for me has been therapy, I’ve pretty much been in therapy since I was like 5 and I’ve done a lot of it

meds might be helpful to some people on their own but for me I think they would have been mainly useless without some form of therapy

meds kinda helped with some of the “edges” ie, the resulting depression and anxiety of the personality disorder, hopefully will help with some psychotic symptoms too, therapy has also helped with some of these issues on the edges, and I’m currently addressing some of the more specifically schizotypal core issues, although I will likely have to continue doing the work on those issues for most of my life

if you have a good doctor who listens to you, if you want to continue trying out meds then you might still find one that helps you out! I don’t really have a lot of advice here, because the effects can be so different from person to person. but I’ve found that meds only help on a really small scale, they kind of take a little bit of the weight off but it’s still a whole lot of heavy lifting on my own

so therapy was real good for some of that stuff too, skills for easing some of the load. therapy for me involved Other People, but for others it could involve other resources, such as online workbooks n that kind of thing....... ‘cause I know personally for me I fuckin HATE meeting new people and having to bare my soul for them, so therapy gets. interesting

and I know therapy is not realistic for some folks (and also not what this question was about but I’m just rambling now)

n I know especially that that shit gets fucking HARD when any sort of psychosis and paranoia is involved, in terms of stpd, I flat out refused to speak about certain symptoms with professionals due to paranoia and fear, and had a lot of issues trying to come into a therapy environment and immediately having complete strangers be like “ok tell me about what’s up”

like, no???? fuck off?? I don’t even know you??

n until recently all my therapies where only tangentially useful as a schizotypal, like, I did a bunch of social anxiety stuff which helped with some of the surface level day-to-day social anxiety (not so much the more deep-seated stpd social anxiety, that whole “it gets worse the closer you get to people” type, very fun), I did a lot of work around depression and suicidal urges and goals and meaningful living and whatnot, I did DBT which also encompassed a lot of work on interpersonal skills and handling dissociation and paranoia

n like. some of it was helpful? none of it got to the core of the issue or addressed what I really needed to address

I got super lucky with my current psychiatrist in that she was someone I already knew for around a year and a half beforehand ‘cause she helped out in my DBT group therapy. so I was able to get a feel for what kind of person she was beforehand and got to find my feet in trusting her in a more distanced context before entering one on one therapy. she also specialises in personality disorders and was the one who actually diagnosed me so it wasn’t like she was like “oh you’re definitely schizotypal, I’m gonna just pan you off to someone more experienced now” which was nice

she’s also the one who’s helping me out with meds currently

but ya, therapy can be A Lot, ‘specially for schizotypals who tend to isolate and get uncomfy in those vulnerable scenarios. in order to make the most out of it I have to practice an extremely uncomfortable sort of “radical openness” which is like..... well, I’ve spent most of my life being miserable and unhappy and feeling trapped and stuck in these patterns, and this has gotten me nowhere, in order for something to change I need to be radically open about my experiences

which gets HARD because the knee-jerk reaction to paranoia and delusions is often to pull back and isolate, and often I’ve struggled with the idea that it’s not “safe” to speak about certain things or that something bad will happen if I do

so it’s difficult, but I have to continually commit myself to being open and placing myself in intensely uncomfortable scenarios, getting used to the idea of trust being An Action, and practicing trust even when I don’t necessarily Feel It

that’s been a really helpful outlook for me and the only thing that’s kept me involved with therapy and meds and treatment. idk if it’ll be useful to others. I also know that some therapists and psychiatrists are shit and being radically open with the wrong people can be a nightmare

but it’s something that applies in my other relationships too and with my relationship to myself, so. *shrug emoji*

but yeah. that’s been what’s helpful for me

meds do a little bit of the work, but honestly I still have to pull a fuckload of the weight on my own, I kinda got to the point with meds where I was just like “ok this is obviously as good as it’s gonna get” and just stuck with it......... which is kind of a bummer of an answer

ik that kinda turned into a whole unrelated ramble in the middle there but I hope this kinda answers a bit of your question maybe or maybe not ‘cause I don’t really know what I’m doing

but also

I hope you have a nice day

[deadmomjokes]

Normal Anon Again 1: Your response was great, don't worry about a thing there. I just really feel stuck because Im still with my emotionally abusive family, and so I had to sneak to even see a doctor. I honestly felt like the doctor barely ever heard me at all, so even though she did prescribe an SSRI (not that she said what brand), I'm kind of scared to continue treatment with her. Because I made the notebook with a lot of care, she said I had OCD and did bring it up again later when I

had refuted it and tried to explain the notebook was just something I wanted to be well done for her. She didn't ever look at it either, so she based it off me buying little tabs and labeling them for ease of access and writing my name on the front I guess? I don't have a lot of money, as I don't have a job, and getting a job is the main reason I want to try medication... I basically have to move out by 2020 from my family, both by their desires and mine, so I'm on acrazy deadline to try to get my life together and I feel like I have no time to find someone new if I'm going to be looking to move away when all the apartments are renting. So it feels like if I want to try medication this is my one chance, but I don't feel like I can trust the doctor handling them. I don't know if I should just try to find a way to make my life work out for a couple months or give the medication a shot even though I don't trust the provider...I've got to worry about getting a job this month or being homeless too, which is why it feels so one or the other for my current situation. Thank you so much for all your feedback, sorry if this was a little messy being explained, I'm a bit frazzled yet, haha.

Oh man, I’m SO very sorry for everything you’re going through! You’re dealing with a ton, and this incident with Dr Garbage certainly didn’t help.

One thing that may be a possibility is going to a normal doctor, like a family medicine doc or general practitioner, and talking to them about your anxiety/depression problems. They can also prescribe psych medication, and it might be easier to pass off around your family and/or to find once you move, since a lot of offices partner or have networks that you can just transfer through. Anyone from a Nurse Practitioner to a PhD in general medicine can prescribe meds like an SSRI or even low-level mood stabilizers. (For my recently upped dosage, I went to a PA-C and they consulted with the folks at my obgyn, so I never even saw a psychiatrist. Tho I’m trying to get in with one anyway, but that’s way beside the point.)

I definitely understand you being unable to trust the current provider; she clearly didn’t hear you or take everything (anything?) into account. Anyone who comes to you from an emotionally abusive situation should warrant a ton of follow-up questions and in-depth probing. Even beyond that, just in general, taking stock of all the symptoms and reviewing any identified triggers is going to go a long way toward real diagnosis. Your notebook should have made her job a breeze, instead of her having to pick through your anecdotes of what happens when, she could just look at your notes! You were doing everything right; a therapist’s dream, honestly. I’ve been in therapy for years and I’m still not that good at keeping tabs on my own symptoms and patterns. I’m enraged on your behalf, because when someone comes to you for help you should reach back out to them, not be prescriptivist even if you’re dealing with prescriptions.

If medication is something you’ve been considering for a while, and feel like it might be a good fit for you, it may be worth trying the current prescription even though the current doctor is garbage, since SSRIs are usually the first try medications anyway. But that always comes with risks, because sometimes the first try doesn’t really work out for you or your specific situation. But SSRIs as a category are pretty safe, and are used for anxiety disorders (including panic disorder and generalized anxiety), ptsd, depression, and ocd as well. So chances are even if you found a psych who did their job well (aka not labeling you ocd for being prepared), they were going to land on an SSRI as a first try, too. That definitely doesn’t make it an easy decision, tho. That nagging fear may always be with you if you try it anyway despite not really trusting her diagnosis, and that could add a layer of complexity to deciding whether the medicine is right for you. Especially if you end up needing to switch medication or dosage, having a doctor you trust from the outset is going to be important.

I obviously cannot tell you what to do, nor do I want to, or even think I should if I could, because personal situations are just that--personal. I would only caution that if you’re already having difficulty getting or doing a job without medical assistance (ie medication), that trying it under serious stress for a few months may do more harm than good as far as worsening your difficulties, or causing new ones. However, sometimes we aren’t in the position to make the “best” decision for our health because living takes precedence; I’ve taken plenty of jobs that wrecked my mind and body and I kept them anyway because I absolutely had to. So I’m not going to get on a high horse because I know exactly how hard it is, and the difficult decisions you have to make in order to survive. I’m just so very sorry you are in that position to make such a decision.

If you do decide to try the medication anyway, some tips on kind of “going it alone” since you won’t be able to/won’t want to go back to the original doctor:

Start at a lower dose than the full final dosage. If she didn’t prescribe a “titration” schedule, starting at half dose for a week is a good place to begin.

Understand that things might get worse before they get better. You might have horrible mood swings, really bad depressive days, or bad anxiety spells before you start seeing the true effects. This isn’t indicative of whether the medicine is going to work eventually, but if it becomes too much for you to deal with, you should stop anyway.

Side effects may come and go. Just worth noting.

If possible, have someone close to you who knows that you’re starting this medicine. Obviously not a family member given your situation, but if you have a friend or anyone you do trust in your immediate vicinity, or even a friend you communicate with long-distance, make sure someone knows. That way you have someone to report in to and who can check up on you as you adjust.

Start by taking them with food, even if it doesn’t have a nausea warning. I’d suggest evening meal or soon thereafter, because SSRIs often cause drowsiness at first (great for helping with insomnia tho!).

You’re probably going to have a full month or two before it reaches its peak effect, since this is your first time trying them. You might see some relief right away, but full efficacy takes time as it builds up in your system. If you can tolerate the side effects (or don’t have any), and you’re able to deal with the mood swings or psychiatric effects, stick with it at least 6 weeks.

Listen to that “don’t drive or operate machinery” warning. First-time-medication drowsiness is a special breed that sneaks up on you and also makes you feel WEIRD.

You can also see about filling the prescription and then researching the name on the label before you decide whether or not to take it. Or, if you have an online account with the pharmacy, as with CVS, you can see the name of the drug there, or even call the pharmacy she sent it to and ask them what the name of it was (”for insurance purposes” or “because I forgot which one it was”) and then research it on sites like Mayo Clinic and rxlist.com (don’t do webmd). These websites include lists of what it’s approved to treat, so if you’re fairly certain you actually have anxiety/depression, look for that on the list. Just know that all websites are essentially required to remind you that an SSRI (really any antidepressant or mood stabilizer) could worsen any suicidal thoughts or behaviors, though this is mostly a risk for the 24 and under crowd with emphasis on teenagers. And it doesn’t happen to everyone.

Should you decide not to do the medicine right now because of the doctor who prescribed it, I applaud you for your bravery and strength in facing both your uncertain future and your mental/emotional difficulties without the assistance you feel you need. That’s a hard, hard thing to do, and I wish it wasn’t a choice you had to make.

I’ll be sending good vibes, thoughts, and prayers your way as you’re dealing with so many transitions and difficulties. I know cyber hugs are kind of a dated internetism, and may not mean much, but I give you all the cyber hugs my cyber arms can muster.

[stellarbisexual]

update

having a good stretch (evenings are usually good), so i’m taking advantage of it: 

(read on for potentially triggering mental health stuff--but if you’re not triggered, please read and reply because i can use all the support i can take)

Wacky, all over the place week overall, just in terms of what my body and my brain are dishing out.  Like... ugh.  I remember the week or two after my last panic attack being bad but I’m not sure I remember it being this bad.  Then again, this one happened with me alone and in public, so more intense circumstances, for sure.  

I’ve started tracking everything: my meds (I’m on a benzo to be used “as needed” up to 2x a day), my food intake, and my feels (I literally have a column titled Feels).  I just want to get a better sense of what’s helping, when I feel the most like myself, and what I can do or not do meds-wise to help myself feel better.

When I feel potentially big anxiety coming on (I’m trying to catch panic before it starts), I’ve been taking a mini-dose of my benzo, like a quarter of a full pill, which is already a pretty low dosage. I’m super fucking sensitive to meds, anyway, so it’s all I need.  (For reference, I only needed half a pill for my full blown attack last week.)  This means, however, that my med intake hasn’t been consistent.  I’ve noticed that mornings have been consistently fucking hard, so I thought I would try taking a mini dose this morning first thing upon waking, which definitely helped--but I still had really fucking intense nausea until around 11am.  Got temporarily paranoid that it might be due to the medication, but I don’t usually experience that when I take it, so I don’t think so.  In general, I have been able to feel most myself after taking the medication, which is a sign that it’s working for me.  

I’ve gone down the not at all helpful rabbit hole of freaking myself out over forums of former benzo users warning over dependency and addiction and withdrawals and shit.  This is not fucking helpful for me and I need to stop doing it--because I really do need them this week and I can’t be second guessing that shit or feeling additionally anxious or guilty about it.  One of my best friends who has a lot of experience with the same benzo said, “Don’t question it: if you need it, take it.”  I’m still way, way under the maximum dosage for which it was prescribed to me, and I’m certainly not feeling high like some people seem to with it.  I don’t like the experience of feeling drugged, but I do like the relief it’s giving me when nothing else is. 

I’ve tried laying off of the med for smaller anxiety and doing things like my usual breathing exercises or meditation (which is surprisingly helpful), and small doses of CBD when that doesn’t help.  Ideally, I’d like to use heavier doses of CBD in place of my benzo because I know it’s milder on my system.  (But I’ve been staying at my brother’s all weekend and I’m very low on the CBD I brought with me here.)  Heading back home tomorrow.

Been cycling through mini-depressive episodes, which, for someone who doesn’t have a history of depression, is totally fucking scary.  This I remember very clearly from after my last attack, but it of course doesn’t prevent me from being paranoid that the medication is prompting it--which again, I don’t think is true based on my experience.  It’s a vicious cycle: I have panic, feel like a failure, and then get depressed, and then get anxious because I’m depressed and I don’t have a history of depression.  I've had a couple of these low episodes every day for the last three days maybe. 

One of the other scary things is that my appetite is totally fucking shot.  I have brief moments where I am suddenly actually hungry and want to eat--and I’ve been taking advantage of them, but I’ve also been forcing some food down at semi-regular meal times, even when I really don’t fucking want to.  Normally, I am someone who eats fast and a lot; I have the appetite of a much larger person, so again, this is challenging to process and deal with.  To preempt more days like this, I bought some meal replacement protein smoothies and Clif bars, just so I can get some easy fucking nutrition into my system when I really don’t feel like it.  Drinking is way, way easier than eating, so that’s the best course of action.  

I’m trying out two other new therapists - one through teletherapy who I already met with once and who specializes in trauma, anxiety, and depression, and another who is local and more hippie dippie - and I made the very sad, hard decision to stop seeing my regular therapist of many years because she’s way too expensive for me right now and I need to be talking to someone a couple of times a week right now. 

The bright side to all of this is that I had been contemplating whether or not to tell my parents about this relapse because, well, they are who they are, and I didn’t think it would be helpful for them to know because it would just freak them out and I wouldn’t reap any emotional support benefits because they’re incapable--or so I thought.  I ended up calling my dad today to tell him.  He’s in FL away from my mom right now.  And it was really fucking hard, but it ended up being a gamechanger, breakthrough conversation.  He basically offered a kind, patient ear, and said that he would do whatever I asked.  It was the kind of parental support I’ve never received--ever--and never expected to but have always wanted more than anything deep down.  He’s not without his shortcomings, but what he said meant the entire fucking world to me.  I cried a lot during and after our conversation and effectively wore myself the fuck out this afternoon.  But: really big fucking deal.  And considering what I’m going through, I’m definitely going to take him up on that.  I’m thinking of having him do stuff for me that I just find too overwhelming right now, stuff he can do from afar.  Though he did offer to come up and be with me, which was overwhelming, in a good way.  He also said that if there’s ever anything I want to share with him that I don’t want him to tell my mom, that he would honor that... which was fascinating and comforting and also a huge fucking deal.  Just... a lot to fucking process.  

Speaking of crying, I’ve been crying A SHIT TON, friends.  I actually love crying and find it super therapeutic, so this actually isn’t alarming for me the way it might be for someone else.  I’m just letting myself feel and process the sadness of this year and what’s happening and stay curious about what’s coming up for me.  For me, it’s a good sign that I’m crying.  I’d be more worried if I weren’t. 

My askbox and inbox are open for any support, words of wisdom, advice--literally anything.  Right now, I could use more tools for getting through my fucking day, especially since tomorrow is Monday and I got shit to do.  I’ve already told my one client that I’m adjusting medication and that I haven’t been feeling great, so at least she has a head’s up on that.  Running errands and being a person is going to be more challenging for a little while--but again, nothing I haven’t been through already (hello, this past winter), and now at least I have the benefit of medication to support me--and CBD if I have to avoid it.  I have experience on my side.  

This shit is brutal.  But I’m so grateful to have support and medication and to have at least felt fully like myself for solid stretches every day since the attack happened.  I cling to those moments and see them as hope that I’ll pull through soon. 

[moitesquib]

On T

A month and a half months ago I started taking testosterone. A choice i realize I had made in High-school, twelve years ago, but only recently was able to bring myself to take the necessary steps; for many reasons, coping mostly. 

The first thing that happened was a sudden peace, and happiness. Something I had only felt a couple times in my life, one time in particular when i finally moved out of my fathers place.  then the hot flashes. but that felt like, some mini fire to welcome in the new me, the ‘who i might become.’ I started looking at all the men coming in to my work (I i work at a home improvement retail chain) and wondering if i would be like any of them. If my work has shown me anything, it’s that a man can be many things, and all the things they are told not to, it’s just how you interpret it- especially as someone who is of a ‘alternative’ gender representation- after all, i sport acrylic nails and still wear my heals and dresses sometimes.  for almost two- three weeks, i was so happy, energetic; i made dinners, lunches, walked home from work, cleaned and did a lot of things that had been so hard for me to do before.  last week i guess i gave myself a little less than the dose i was told to take. and it was a horrible nightmare. Not only that but I started to get my sex drive back, and when i went through puberty the first time it was a nightmare too. I didn’t sleep for like three years, and when i did it was during class. I have started getting only five hours of sleep- which is ok, because i feel actually rested. For the first time in my life.

but, accidentally taking too little, that was a mini hell. I already have an old addiction to pain meds, and suddenly I was going through withdrawals again. Pain, nausea, diarrhea, horrible anxiety, sleeping for twelve hours, crying, not eating. I thought maybe it was just some strange aftermath of having not taken any massive pain meds in a few years; like when someone has done a lot of acid and it builds up in your body. Turns out it was the T.  At least now i know when I don’t have enough, but now i know that i can never stop taking it, even if i wanted to de-transition. I don’t know if that’s anything that is ever talked about. I think I am ok with it, for now, it’s just not something that i thought would be an issue.  I’ve got some acne, which has never been a problem before, but I’m learning, I’m starting to grow facial hair, i can feel it. And i have some pretty major leg cramps and growing pains.  I just have to decide what steps to take next, if i want to start working out, if i want to wear my binder more, if i want to stop shaving, if i want a new haircut, if i want to start telling people, if i need new clothes, if i should start training my voice, should i stop doing my nails, do i want to look like some of the men i see at work. 

a lot of these things are to emulate what a man should be, and i realize is no reflection of me necessarily. I’ve lived thirty-one years of my life in a costume of a woman, of a lesbian, of someone pretending to be things so society might accept me. And it’s kind of hard to see where I really am in all of that. I have to spend time trying to decide who i really am after all this time.  the people i look up to are more often than not some kind of drag performer or scientist. playing in worlds of theater, self expression, and scientific theory. Seeming to put me in this strange place of magical sociology. 

I see friends transitioning afab ftm as well, and it all seems so knowing and solid to them. like they know what to do, how to act, how to feel, mostly its anger and defiance. and then I just feel like I’m wading in a shallow pool, with no real connection to them. its like the world of ftm is a secret suffering corner where masculinity starts the moment you decide you are trans. Don’t talk about it, don’t relate, don’t show anything, don’t fear, don’t share in hopes. Just vanish and blend in. 

it’s probably more that the people in my hometown are like this. it’s probably just that i live in a place where no one wants to be who they are, no one wants to talk about it, and no one wants to admit they might be different. Fear as part of it, and never seeing anyone else do it as another. 

I never had severe dysphoria until now. Now i wake up and wonder how sick of the person in the mirror i am going to be today. How the mirror shows some strange alien creature that isn’t me now. Even the masks and costumes i wore to fit in were more me than the thing i am now. 

“you clean up real nice” is what a friends uncle told me when i showed up in a dress, makeup, heals, and wig, to his party; and i said “this is what i do, i make costumes, i wear costumes.” and i was so insulted, but i knew i was good at it. 

but now what. now what do i do, now that i am wholly uncomfortable in my own skin. 

[jenroses]

Sometimes it’s really hard to write about other people’s happy times when it reminds me of when I was strong and thought I could do almost anything. 

Sometimes it’s an escape, but sometimes it’s just a really rough reminder of how hard I’m struggling right now. 

The true answer to “How are you” behind the cut. It ain’t pretty.

The nausea is bad right now. Every week it’s a little worse, Saturdays. The dosage hasn’t changed, once a week I sit on the toilet lid while my husband is in the bathtub, and I swab alcohol between the stretch marks on my belly while he reads some old book or another (literally old, he’s on this kick and I think he’s up to the late 18th century? Maybe 19th? Idk.) 

I swab the top of the tiny vial of vile chartreuse poison. It’s thick:  in the little glass container it rolls thinner than honey, but thicker than oil. 

I pull out a syringe and draw .8 ml of air into it to push into the vial, in order to not create too much suction inside when I’m trying to pull the thick liquid into the needle.

The flashback comes when I get ready to inject, every time. When I was pregnant, I pushed a much larger amount of fire into my belly twice a day, every day, for most of ten months. It hurt, it bruised, and it kept me from clotting, and it meant that I survived a pregnancy without clots, long enough to give birth to a bundle of ornery sunshine. 

Methotrexate does not keep me from clotting. This is poison, and it’s only once a week, and the needle doesn’t even hurt going in. It doesn’t hurt pushing the medication in. But I know what’s coming. 

I do this before I head to bed. It’s almost always six or seven in the morning, because I dread it, and I want to milk the last of the “feeling okay” I’ve finally managed to achieve by the time I’m six days out from the shot. So I stay up too late, and then collapse into bed and cease to function for the rest of the weekend.

I sometimes think that I’m making too much of it. It’s only a little bit of chemo. For cancer, it would be 10-25 ml, not .8. It could be worse. I could be taking it orally and killing off my gastrointestinal tract. With the blood thinner I’m on, that seemed like a bad idea, so shots it is. 

When I let myself think that way, I do ill-advised things like decide I can fix shit and push through, like I did today when there was a crisis in the house over the fact that a DVD had come from the library as a blu-ray, for which we have no player. So I went to a store that had no electric cart to buy things that are literally way more expensive than a season of Game of Thrones could ever be, and came home to discover that there was literally no way to install anything on the computer that was supposed to get it. I sat there for an hour trying, on the wrong chair, which I should not have done, and then spent another hour trying to figure it out on a different computer. I emerged victorious, with a migraine and a blossoming fibro flare. 

I take... take feels like the wrong word. I subject myself to methotrexate in order to keep my immune system under control, to prevent my body from waging war on my gut, my liver, my salivary glands, my lacrimal glands and the membranes around my knuckles. It doesn’t work nearly as well as steroids at making me feel good, but might have fewer side effects long term? It’s hard to say. Something is going to kill me, and whether it’s the rheumatoid arthritis or the medications to fight the rheumatoid arthritis, or the blood clotting disorder, or the meds I take to prevent clots from forming (when the real problem is that once clots form, they just don’t STOP)... I don’t know. My grandmother lived to be 101 and right now that feels like too damn long. 

I have children. I have a husband. They need me, god knows why, and so I stay. I spent most of my time with my son today yelling at him. He’s five and it’s absolutely not his fault that my skin is so sensitive that touch is painful to me. I’m sure there’s probably a more graceful way to tell him that I just spent every last bit of energy I had making a couple of eggs that may or may not stay down and no, I don’t have the energy to deal with him wanting a new packet of salami and cheese when he hasn’t finished the cheese from the last one. He spent most of the day hanging out with his dad and his oldest sibling. My daughter is fortunately well cared for. We are protected from each other, but I wonder often what she thinks of our new reality, where she always has someone, but it’s almost never her mother because I can’t risk her feet or her teeth, because I can’t risk my temper or my lack of coping. Because I can no longer lift her, this child that I carried on my back for three straight years because she hadn’t learned to walk yet. I only stopped because I ended up with a clot and couldn’t lift anything. 

Writing has been hard this week, because when I write I draw on my experience, and right now it hurts to remember that once, I was a dancer, once I was a competitive swimmer, once I stood in front of people trying to ignore a bigot and roused them to speak out against him.

When I write I remember the things I could do and the places I went. I did so much. And it feels like that is over. The last convention I went to hurt. I had a scooter, and pillows, and a hotel room to retreat to, and it hurt so, so bad that I now associate conventions, which were fun, once, with blinding pain. 

The last one I went to was just before I was diagnosed. My joints were on fire. I thought I would need a wheelchair forever afterwards. 

I’m afraid to go back to the doctor and tell them how much the methotrexate is hurting me because the alternatives are thousands of dollars per month.

We can afford it, I just hate being that much more of a burden. That money was supposed to let us enjoy my husband’s retirement. But the idea of going on a cruise? I don’t see it happening and I don’t know how to break it to my husband that it might not be possible. 

I keep feeling like there are things I should be doing, like I should be trying, TRYING to exercise, like I should be trying to do something about my weight even though I know that trying to do something about my weight is not actually going to result in making healthier choices. There are barely any foods I can eat. No foods that are unambiguously healthy for me. The last thing I need to do right now is tell myself I can’t eat the few foods that don’t actively make me sick.

But today I tried to push through and I feel like I’m going to lose the entire week to it. 

I have no extra resources for social niceties. I’m completely social-scripting my responses to comments on my fic (please keep making comments, it matter so much, just understand if my responses are short.) I’m making huge social errors because I’m misreading things because the only way I social is by applying cognitive effort and I just don’t have it right now. 

I hear about people living and doing relatively normal things with RA. But my RA was not correctly diagnosed in a timely fashion. In retrospect, I think it started in 2014, but they didn’t have the right test in common usage so they shrugged and attributed my symptoms to “I don’t know some sort of inflammatory process probably related to EDS” and so by the time I was diagnosed, 29 joints were on fire and the antibody levels were so high they could not be accurately measured.

A lot of people with RA just have RA. 

I have RA, EDS, Hashimotos, Sjogren’s, fibro, sleep apnea, allergies, IBS, and Factor V Leiden. I’m probably autistic, definitely neuroatypical, with massive sensory issues and a brain that does amazing things in a lot of areas and is utterly inept at the things people expect to be easy. If I write people well it’s because I’ve been studying human beings like an anthropologist since I was three years old. (I gave my mother a sheet of paper on which I’d drawn a wide variety of facial expressions because I was trying to understand facial expressions.)

Someone asked me once, “Have you considered that your problems might be psychological?” I laughed in his face. The idea that I could, via mental illness, magically clot the blood in my veins or sabotage my own thyroid? I mean, I absolutely have anxiety and intermittent depression issues, but ffs, those things don’t make my salivary glands swell to the size of golf balls. I get tired because my body is attacking myself, and exercise makes that process worse because it fucks with my immune system which is pretty good at fucking its own self up.

Someone asked me once why I pursued so many diagnoses. The answer was, “Maybe if they figure out the right one, they can fix something.” It’s not because I *like* collecting diagnoses. I miss being able to eat normally. I miss being strong and physically fit. I used to swim 10 hours per week. I used to ride horses. I used to go camping and loved it. I used to be able to build things with my hands. 

I have to remind myself not to do those things.

I have to, because pretending I’m not sick makes me sicker.

Every shot I take seems to push me into a flare. Not a huge flare, just a few joints reminding me that this isn’t over. That this will never be over.

I got through the twice-a-day-Lovenox routine because I knew it was finite and i knew there would be a baby I wanted very much at the end of it.

I will be on methotrexate or something like it for the rest of my life. 

It feels like poison. The sneaky poison that you think isn’t poison until your lips go numb even though you didn’t drink it. And then I sleep and think, “Well, at least I can sleep.”

And then I wake up and my whole body hurts, and the exhaustion pulls at me so hard, and I’m supposed to eat something so that I can take the small dose of steroids I’m still on, and I don’t want to eat because my stomach is on a boat. 

Saturdays might as well not exist. Sundays aren’t much better. By Monday I can drag myself to physical therapy. By Tuesday I can drag myself to the grocery store. By Thursday I start to think, “I really should exercise” and on Friday I fight dread about the coming shot. 

This morning my husband said, “I blame Trump.”

And I said, “You might as well. Stress increases inflammation, and most of my stress in the last six months has started with That Man.”

It is no mystery to me that so many people died last year.

The mystery is how we keep going when it’s hard.

“How are you doing?” asks a cashier. They all ask this. Everyone, locally. It’s a reflex thing.

And my brain won’t let me give the flip lie of an answer. I can’t say I’m fine. I’m not fine.

“I’m doing,” I echo. (Right now this feels like a lie, too.)

Sometimes they say, “How are you today?”

And I just say, “I’m here.”

Sometimes what doesn’t kill us just doesn’t kill us (yet). 

I’m not stronger, I’m just not dead.