I’m becoming one of Those People Who has multiple bikes for different reasons One for travel and one for getting around town I’m one of those people who feels a little twinge of guilt at the luxury of being able to save enough to buy two bikes when I only need one.
I’m becoming one of Those People With a detailed list of current and future backpacking gear That can be sorted by weight and type One of those people who finds living in the elements a relaxing escape from the default world chaos.
I’m one of Those People Who instinctively says yes to adventuring And dives head first into the unknown One of those people who is familiar with uncertainty and comfortable learning the details as they go.
I’m one of Those People Who is caught halfway between crippling perfectionism And an empty garden of fucks One of those people who dabbles in every kind of art and masters a few.
I’m one of Those People Who chose their own family And created their own name One of those people who has recreated themselves in their own image more times than they can count.
I’m one of Those People Who sometimes can’t get out of bed Because depression and anxiety are too loud One of those people who tries to prioritize selfcare but still falls short frequently.
I’m one of Those People Whose undiagnosed chronic illness Undermines their ability One of those people who tries to make plans and then has to cancel because their body decided to quit.
I’m one of Those People Who sometimes tries to ignore their disability As if that makes it vanish (it doesn’t) One of those people who has relied so much on themselves that accepting help is scary.
I’m one of Those adventurist, artistic, outdoorsy (but not athletic, let’s not kid ourselves), queer, sick, disabled People who worries about the future of the planet.
I’m one of “Those People” probably not unlike you.
I’m trying to see this period of my life as a good thing – an opportunity to unpack the trauma I’ve been avoiding and do the healing I need to do. I want to be able to take this mystery condition that I still have zero answers to in stride and not be angry and grumpy and depressed about it, but I am not there yet.
So much of my day to day is currently consumed by pain and fatigue, it’s impossible not to get upset and discouraged about it sometimes. But I am also learning some good things, like:
I am extremely loved and cared for by people I’ve never met (thank you, holy shit <3)
I am really good at choosing my family and have a strong community
I have the capacity to be more present with people I care about
I feel guilty and self-conscious about being so open with the giant trigger that is living my life with a ghost disorder that also constantly reopens trauma. I feel guilty for making the decision to step back instead of plowing through, because on some level I still feel like I deserve to suffer and actively choosing against that feels like blasphemy.
So much of my CPTSD is manifesting in my body and my instinct is to take all of that angst out on myself instead of understanding that none of this is my fault. I worry that by being open about the infinite layers of pain that come in waves is too much and that I’ll just wind up drowning people in my whirlpool of depression. But then people reach out to me to say that my candidness is helpful. My community immediately reminds me that I don’t deserve suffering and taking care of myself is the right thing to do.
So I’m trying to keep that perspective: I deserve to take the time to heal and get better, and doing so doesn’t make me an awful terrible selfish person (fundamentalism is still clacking around).
I’m discovering a lot of very specific traumas that this whole illness is sitting on: There’s medical neglect and anxiety, and then there’s the deep seated fears that resting will get me in trouble, that I am a nuisance if I can’t do what I usually can, that I did something to deserve this, and that I’m useless because of it. Doing The Work of trying to heal 18 years of bad experiences while sick is exhausting, but I’m trying. I think in some slow small ways I’m succeeding.
I’m still getting eaten alive by brainfog and anxiety and the grief that accompanies realizing that I really am disabled and I really do need help, but I’m Doing the Work, and I’m asking for help, and even on my worst days (like today when nothing touches the pain) I can tell that I am loved and I will eventually be okay. It might be different, it’ll take me a while to get there, but I can at least imagine getting there, and that’s progress.
I’m feeling many ways about my disabling illness. There’s a good bit of anger, a lot of exhaustion, 6 feet of grief, and a lot of anxiety around whether or not I’ll get better.
There’s a part of me that has resigned itself to this new normal and a part of me that really wants to fight it. But the biggest part of this equation is my complete exhaustion.
Cortisol labs were inconclusive so I have to do the entire test again and follow it with an 8am blood draw to confirm whatever the results are from the spit test.
My doctor did say that it seems like I have IBS (shocking I know) so she gave me some Omeprazole and Dicyclomine to help with digestion (and I have since eaten 3 meals without feeling nauseated!) and Banophen so I can sleep. I’m hoping with rest and the ability to digest food my body will calm down a minute but I’m not sure. Everything went extremely downhill after my endoscopies and I don’t think my body has recovered from that trauma.
I still feel very lost. I’m trying to focus on making art because it helps, but I miss school, I miss all the things I was doing on campus. Being relegated to the couch all day because I ran an errand the day before is really demoralizing and upsetting.
I’m very sad because I feel like I’m missing out on so many things. I feel like I’m letting people down when I flake because my body just decided to quit at 4pm. I’m sad I can’t be doing all the things in all the ways I want to be. I’m sad that this is so hard and it takes such a toll – not just on me, but on everyone I care about. I wish it didn’t. I wish I could live my normal life but instead I don’t know that I will ever get that back and it’s terrifying. The FOMO is hard and real and I don’t really know how to cope with it.
Having an invisible disability on public transit is really hard. I know I look healthy and young and spry, so I don’t sit down when I should because I don’t want to deal with people judging me, despite the pain. I don’t want to ask for help because I look like I shouldn’t need it. I still try to do as much as I can by myself because I don’t want to believe I’m not well. Which is really counterproductive.
I realize that I need help if I’m going to make it through the recovery process without drowning in debt or dying from financial stress, because being sick like this makes looking for a job completely infeasible.
I live off my patreon, the podcast and a side gig which totals to about $900/mo….in the most expensive part of the country. 75% of my income goes to credit card bills and the rest is divvied up between transit passes and groceries. There are supplies that I need to make cooking and baking (mostly bread and hummus) possible so I don’t have to take a bus to buy a very small very expensive loaf of gluten free bread, but I can’t afford those either.
If you’re interested in helping me survive this terrifying journey there are a bunch of different ways to throw money at me and get varying levels of art in return (along with my undying gratitude):
Support me on patreon! Patrons get access to download the files and behind-the-scenes updates – there’s currently an exclusive video of me reciting this poem. If I can reach $1k/mo on Patreon I will be able to sleep better at night and not feel like I should skip eating to save money.
Up until last week I was able to use school as a distraction from the mystery that is rampaging my body. I sent out letters to everyone over last weekend saying I’m dropping out but staying around until the end of the month to tie up all the loose ends. I have since lost most of my fucks for meetings which is both good and bad. Good because it keeps us moving along and productive, bad because I forget that this is entirely new territory for the rest of the student cabinet and I want to be much more patient than I feel like I am. Although, people have been thanking me later for my tension diffusion skills so maybe I’m just really hard on myself.
I am really hard on myself. I’m even harder on myself now that I’ve dropped out of school, as if dropping out somehow nullifies the health issues that required this decision in the first place. I’m not instantaneously better after removing the stress of school (which is obviously a ridiculous expectation), and I feel like I’m getting worse. But is it worse because it’s worse or worse because I’m finally staring at it?
I think some of this is that since since I’ve removed my consuming/enabling distraction the only option left is to look this problem in the face and confront how bad it really is.
I feel like I am losingso much that is important to me. Even though it’s my decision, it doesn’t feel like a choice (which in a way is its own progress). I’m so tired of fighting for e v e r y t h i n g only to have it fall apart.
I’m losing my memory, and it’s gaslighting. I can’t remember a story I heard, or a story I told 10 minutes ago. I can’t remember words or how to give directions clearly, I can’t remember where I am in space or what I was going to do 10 seconds ago. I’ve always had this occasionally, but it’s been really bad lately. I’m frustrated with myself because I see these things happening and I am unable to stop it. I can’t remember the word that’s on the tip of my tongue, my body and my brain are so disconnected right now.
I haven’t slept well in ages, which is likely a contributing factor to the memory and spatial reasoning. I’ve also been in a CPTSD flare for months that is really hard to come out of, because the dietary restrictions I have now taste like the cult. I want to take the test for a motorcycle permit but I don’t feel like I can rely on my memory for a quiz right now. That’s how deep in brainfog and fatigue I am.
Meanwhile, every single test we’ve run so far has come back normal. I have lovely, photogenic, nonproblematic organs that literally cannot digest food without immediately making me nauseated if I forget to take an enzyme.
As much as I hate it, my body is at least proving dropping out so I can navigate this shit was the right call. I have so much anxiety about all of this too, but that’s another post entirely.
I sent all the emails on Friday that told everyone who needed to be told that I’m dropping out for my health.
I’m too sick to be in school and on campus so I’m dropping out. I have been stuck in a shame fueled depression since I made this decision even though I know it’s the right one. School has been so hard but also so good. I miss it and I feel lost. I haveotherprojects but my depression ate my motivation and I need it back.
Most of last week I spent trying to come to grips with it, and talk about it in a way that wasn’t utterly depressing. Everyone at school has been super supportive and not angry at all, which is the anxiety that was eating me alive. But I’m still really sad and really devastated about it.
I don’t have the energy to get into those feelings right now, but the words will come soon.
My semester begins tomorrow. I’m very anxious. My body has been tense all day…all week, really. I’m not anxious about my classes – I’ve re-evaluated them thrice now and I’ve taken my health and spoons into account so I’m only doing one in-person class (US Government), and two online classes (English 5, and Cultural Geography) in addition to my Student Government & Laney Queers organizing and my independent study (which is essentially writing down what I learn in the student senate).
I’m anxious because this is the first week of school and on Wednesday I get snake cameras and sedation instead of doing fun Welcome Week activities, on Tuesday I meet with my department chair and have my first class while on a liquid-only-diet and then get to drink the colon cleanse “juice”.
I think I’m more irritated that my first week as a senator is going to be interrupted by being sick and there’s nothing I can do about it than anything else. I’m realizing a lot of my life is going to continue to be interrupted by being sick and there’s nothing I can do about it and it’s really just…. quietly devastating.
That knowledge hangs on me like a heavy jacket twice my size. It’s with me every moment of the day. It envelops me when I struggle to put together a meal because I can’t get out of this fatigue and brain fog regardless of how long I close my eyes. I’m quietly haunted by my own ghost that I can’t figure out how to release.
I don’t know how I’m going to get through the next semester. I don’t know if my body will hold together or if I’ll have to drop out. Everything feels so precarious and I’m so so exhausted.
So tonight I managed to make myself some Gluten-Free low-ish-fodmap peanut butter energy bites so I can at least have something to munch on during the days I can eat solid food. Doing post colonoscopy Kieryn a solid.
Everything has been a whirlwind since school let out for the summer and it starts up again in 3 weeks but I am still reeling.
The rug was pulled out from under me in June when I went to the ER and was diagnosed with Colitis but couldn’t see a GI Specialist until the middle of July. As it stands, I have an endoscopy & colonoscopy scheduled for my first week of school when I’m supposed to be doing Senate-y things, but it was the soonest they had available so here we are.
My new PCP is helpful and working with me on the diet changes through this process, I am emailing her a weekly check-in on symptoms which is very helpful considering her next available appointment for a followup is in September.
I have learned that, apparently, what my body needs right now is to be Gluten Free, LowFODMAP, and vegan….which feels impossible even though it isn’t actually. I was miserable all last week because I stopped eating normal bread, but on Sunday I found some ($$$$$$) Gluten Free bread mix (and then had a minor breakdown because needing to be GF is breaking my budget). The bread I made (with this recipe from the bag and some rosemary) turned out surprisingly well and now I need to acquire better baking equipment and supplies so I can get through this semester in one piece.
On top of that fun health spiral, my degree program is unlikely to survive, and all of my degree classes were cut for this semester. Additionally, Peralta is not doing well financially so most of this week I’ve spent in a mild panic talking to Deans and coming up with a plan for graduating by next December.
After talking to the Dean of the department I’ve decided to switch majors from Labor Studies to Political Science, this way I can get my AA and transfer to a 4-year that has a Labor Studies equivalent.
My next steps are: Meet with a counselor to get an updated SEP, and then meet with the Department Chair to go over both an Independent Study plan and figure out how to get my LABST classes to count towards my Political Science degree.
Aug 1 is my first day of being an ASLC Senator, which is a 2 semester term. I’m having a lot of feelings about changing majors, and being a senator, and gender feelings about how my problem was immediately addressed without my having to over explain the situation entirely because I was being read as male, and being sick and how that’s going to go down this semester (and how am I going to get through the first week of school while doing colon prep?), and and and…. I want to write more about that later but I am too exhausted and more importantly….
Last March I wrote a 15 month synopsis of what it’s been like on HRT:
I wanted to write another in December when I hit my 2 year anniversary but that occurred over finals week and never happened, so here we are. 30 months on T!
After my Hysto I lost about 4lbs, and have been hovering between 104lbs and 110lbs since, partially due to my testoterone being too high. I really don’t like being this weight. I’m trying to gain but can’t put any on – although that is not entirely the testosterone’s fault and may have more to do with whatever is behind the colitis diagnosis I got in the ER last week.
Mental & Emotional Health Changes:
I’ve continued to become more at home in my body in some ways. Getting my uterus out did worlds of good for my dysphoria. It was like this war that I had always been fighting suddenly ended. This introduced me to another war that I didn’t know I was having between my body and my brain and trauma which is good, unrelated to testosterone, and really difficult. But what is amazing is having a base-level of okayness with myself that I’ve never had before.
I see myself as objectively hot, and kind, and confident, and smart, and capable. Which are things I struggled to see myself as before when I was so caught up in how wrong I felt. I don’t have that as much anymore, and it’s wild and liberating.
My voice deepened by at least 3 octaves after my hysterectomy. Apparently removing all your estrogen making components will do that to you. My skin has also become rougher and dyer (which also makes it greasier, weirdly?!). The angst is also a thing that comes and goes and is really irritating and sometimes jarring.
Immediately after my Hysto, while I was taking 150mg of T a week, my hair spontaneously created cowlicks e v e r y w h e r e. It became utterly ridiculous to shave. After dropping my testosterone this year, the cowlicks have calmed down a bit and now it’s only the usual bit of unruly instead of intensely absurd. Overall, it’s also thickened quite a bit (I didn’t think it was possible but here we are), and my beard is coming in nicely. It almost reaches around from my ears to my chin, but not quite. There’s also a set of patches on my cheeks that are trying to be mutton chops but haven’t quite figured it out yet.
All the rest of the hair on my body has also intensified. When I shave my legs or pits (never super close bc the growing back period sucks) it looks like someone has sheared a poodle in my bathroom.
I dropped out of Ballet before midterms but, damn my legs. My body grows muscle like no one’s business apparently. Just doing floor and barre stretches for 6 weeks really strengthened my core and my legs in heels are fantastic. Most of the growing pains have subsided, though my hips are still trying to shrink.
I have zero tits to speak of. I keep thinking they can’t get smaller and then they do. I can actually get away with going topless which is wild.
My dick can reach things now(!!), and I have more pubic hair than is reasonable. I am actually considering laser on some of it because it’s just….not okay.
After my hysto I started dropping my dose from 150mg/wk to 120mg/wk, then in February all hell broke loose because we never checked my hormone levels after removing the estrogen producing organs. My doctor at the time put me on a schedule (after initially making me drop from 100mg to 50mg) to drop by 20mg every two weeks starting at 100mg. I literally couldn’t show up to school more than half the time for like two months. In May I found a new PCP who has me dropping by 10mg every 6 weeks. I’m currently taking 80mg/week after self-dropping on my own for two months based on what felt better.
I was unable to gain weight because my body was just feeding on the testosterone and I wasn’t feeling hunger. So I’ve been using “feeling hunger” as my signal about whether or not the dose I’m on is low enough. 100mg turned off the hunger feeling, so I dropped to 90mg and stayed there until I stopped feeling hungry, and now I’m at 80mg.
I still desperately need to switch to patches, that’s what started this whole thing to begin with. I’m hoping to talk to my PCP about that at our next appt.
I’ve been having friends do my injections for the last year and a half. This is why I desperately want to switch to patches, but in the meantime, I’ve been using 5/8″ needles (basically insulin needles) and doing an IM injection into my thigh because I have zero fat. This has stopped the nerve poking which has also made me realize that I’ve had chronic leg pain unrelated to shots which is it’s own thing entirely. Such fun.
ALWAYS CHECK YOUR TESTOSTERONE especially if you remove both ovaries
If you don’t do close shaves, you can have all the joy of less hair without the aggravation of it growing back
As I’m laying in bed to write this I’m warding off an anxiety attack, nausea induced by adrenaline, and so much adrenaline. I started talking to myself a few minutes ago when I felt my body go tense and my chest tightened and I decided to take a hydroxyzine, take a hit, and use my inhaler to give myself a chance to breathe deeply and stop for a second (Still no luck finding a psychiatrist, and I really need some kind of anti-anxiety med right now).
I got freaked out because I have been a spiraling mess since I had to email my ballet teacher about not being able to perform and told my classmates in case my teacher missed the email. I’ve been out of class for a whole month because I have not had the physical capacity to practice or make it to class at 10:45am.
I realized I was getting anxious while I was trying to go to sleep tonight because tomorrow is Tuesday and I don’t know if I’ll be able to make it in again. I’m worried and anticipating that I’ll have to drop the class, the last day I can drop with a W is April 26th. I’m worried about what this means for my financial aid since that would drop me to 8.5 credits. I’m taking 9.5 this semester which is ~3/4 time…(I wonder if I could get my student organizing job to count as like 3 credits for union organizing, and then I’d be more okay?) I need to talk to disability services about that this week.
I’m really devastated that I can’t perform this semester. I’ve been wanting to get back into ballet for years and never had the opportunity or ability to do it until this year, only to have my body nope out on me. Ballet has always made me feel strong and graceful and grounded. The stretches are meditative and something about moving in unison with a group of people on stage is just satisfying.
I love how doing ballet feels. I just wish I would stop waking up too tired and in too much pain to be able to do it. Some part of me feels like I should just go do it anyway and push through the aches, but my body feels so precarious right now with my hormones and health and immune system up in the air.
The other portion of this anxiety is worrying about what happens if I show my face again. I’m embarrassed that I’ve missed so much class and been such a flake on the ONE THING I TOOK FOR SELFCARE (and at this point my back is starting to ache as if I am literally a hitting a nerve). I’m really angry about it. I feel betrayed by my body and disappointed in myself and I know it isn’t my fault, but I feel so ashamed.
I don’t want to face the reality of my meatcage right now, or ever, really. But if there’s one thing I learned over spring break (which was bookended by health problems) it’s that my body currently has no chill and it is running on almost nothing.
So maybe what I do is give myself this week back, to try and get into the groove of school (and queer prom!) without pushing myself (read: going to ballet in the morning when I need to make sure I’m still sleeping and eating). Then, maybe with my body’s nutrition getting sorted, some of the pain will subside enough to do ballet again next week?
This was a long way to get to talking myself out of pushing myself tomorrow, because it feels like pushing right now, and honestly…I need to not. MAYBE, just maybe, that makes me smart and not bad.
I’ve been pretending I’m not because it’s the only coping mechanism I know and if I don’t stop doing things then I don’t feel pain and everything is fine.
Until it isn’t.
At some point I crash and my immune system disintegrates and I get sick with one thing after another. Not helping is that insurance is requiring me to lower my testosterone level in order to even try patches instead of injection, which meant that right after school started my Doctor had me lower my hormones.
First the nurse told me over the phone to decrease my dose from .5ml to .25ml which doesn’t seem like much but that takes me from 100mg to 50mg in one fell swoop and need I remind you, testosterone is an anabolic steroid? That sent my body into withdrawal for 3 weeks. They called me the next week to correct it after I complained about dying, and I was to lower my dose by 20mg every 2-3 weeks, so .4ml for 3 weeks, and .3ml for 3 weeks. I got to week 2 of the .3ml right over midterms and it was h e l l.
That was a mistake. I went in to see her two weeks ago after being so out of it I couldn’t go to school half of of the time and at that point she said she was going to consult with someone who had more experience with HRT. Turns out that I’ve felt so shitty because my hormones were dropping too fast, so now we’re back up to what I was taking for another 6 weeks and then dropping by 20mg for 6 weeks and then I don’t know.
More than that, I’ve been seeing my doctor about the same Auto-Immune-ish symptoms for over a year. I’ve been fatigued for as long as I can remember but that is intensifying dramatically. As is my Raynaud’s, dizziness, brain fog, muscle spasms, and insomnia. My bloodwork isn’t really telling us anything, but it’s triggered by stress and my cortisol release mechanism is on a hair trigger.
All of this has been making me super anxious which just compounds all of those problems (I can only laugh at the hilarity of stressing out about my stress disorder, IF ONLY I COULD STOP I WOULD BE FUCKING FINE. OMFG). So much so that for the last week and a half I’ve been beside myself, unable to sleep, unable to cope, just feeling like my body was made of adrenaline, until I managed to take half a xanax and have since started to slowly crawl back to okay.
Now I desperately need a psychiatrist and a doctor who can refer me to a rheumatologist.
I’ve been so devastated because two weeks ago I started really, understanding what it means for me to be disabled and sick. I dropped out of performing at the spring ballet recital because I haven’t been able to make it to practice due to pain. I have to manage my physical energy spoons judiciously and I fucking hate it.
I’m so frustrated because I’ve FINALLY gotten to the point where I feel alive and like I’m doing the things that bring me fulfillment and joy, and I am NOT casually okay with being dead anymore, and NOW my body is trying to murder me? NOW?!
R U D E
who gave it fucking permission?
I don’t have a resolution to this other than: I’m currently switching Doctors because like 8 people have told me I need to, including my therapist, and I’m working on finding a psychiatrist who can help with the anxiety spike, and I’m not dropping out but I am worried I’ll have to if I don’t get better.
I’m just so angry and hurt and feel betrayed and I feel like I need to grieve for myself but that’s a really confusing feeling. I have therapy on Wednesday at least.