#one time I went and ended up reinjuring my knee and got sick from some flowers I'm incredibly allergic too.

[decaf-mother]

I'm sick and my dad's mad at me for not going to the flea market with my mom.

[saydams]

i have had a difficult morning and just got back from a difficult (as usual) doctor's appt. i am feeling very frustrated. nonconstructive complaining under the cut

i would like to have a doctor's appt that does not include angry crying, either during or after. i feel like that's a reasonable thing to want.

i went to the doctor for my physical this morning, and i had a list of things i wanted to discuss with her as well. but the nurse doing the vitals and all ended her time with me by saying, "did you have any concerns? is this your physical?" and i said "yes" but before i could continue she said "great" and left.

ok. i guess i should have said "i do" instead of "yes"? that's ok i can still tell the doctor.

doctor asked me tons of questions, i answered them, some of them related to my concerns so i brought them up as they came up.

example she asked how my knee was, i said it was really bothering me and i wanted to go back to physical therapy for it. she said "no, i can show you an easy exercise. you dont need pt."

i have 45 minutes of pt already assigned. but i havent been doing well with doing it recently and it's been about 10 years since my pt, which helped a lot. so i think it's reasonable to want to go back and be reevaluated, maybe get the exercises adjusted. since i stopped it's hard to start again and having someone help me to know if it's ok pain or not is helpful.

(i also am having a lot of trouble with my shoulder, which i had pt for 12 years ago and 8 years ago and have reinjured many times. she did not ask about this so i was going to bring it up by the end) i was concerned that trouble with my shoulder might be why the skin of my hand has been going numb for a couple of days at a time. this is a new symptom and im concerned about it.

she asked about my allergy testing and i told her the allergist found i didnt have any, food or pollen. which was weird because i have symptoms, and bad hay fever. allergist said sensitivities can cause same symptoms (minus anaphylaxis so that's good) but wont show up on allergy test. he diagnosed me with nonallergenic chronic rhonitis, and said to see a nutritionist about the food.

i told my doctor this and she kept saying that a nutritionist can't do anything for pollen. and i kept saying i was concerned about the FOOD not the pollen. and she would not hear me. until i raised my voice and started crying with frustration. at which point she said, "oh, the food? well your insurance won't cover a nutritionist for this. why are you concerned?" and i explained that i was sick, that eating food made me nauseated and gave me stomach pain, and i was always itchy, and i had all these ibs symptoms.

she said i needed to see the gi instead. i explained (for the second time in the appt) that i couldnt reach his office because his voicemail wouldnt accept messages and no one ever picked up the phone, and that i hadnt been able to reach him the whole time he'd been my gi, i only got to speak to him when he called me. and he hadnt called me in over a year.

my doctor didnt seem concerned by this, but did say "oh that's ok, i can send him a message to contact you".

but isn't that odd? like, isn't that a strange and frustrating thing? it's not normal, right?

and then she said, "ok, nice to see you," and walked out.

and never gave me a chance to bring up any other concerns? (or show me the exercise she wanted to show me instead of pt that she refused to authorize)

so i went to the main desk and started crying (not on purpose) and said i needed to make an appt and they said, ok, what did your doctor want to see you about? and i said in a not calm tone that she didnt want to see me, i needed to make an appt with her, because no one was listening to me and i had concerns and i needed to make an appt to discuss them.

so the front desk person said to wait and she was going to go and find out what happened and i was so upset and embarrassed for making a fuss.

and i had to go back into the room and the doctor came back in and said "ok well what is wrong" in a super dismissive tone and i said "i didnt get to tell you what i was concerned about" and she said "ok tell me" and so i said my shoulder was bothering me (i forgot about the nerve) and my knee was bothering me and she wouldnt refer me to pt but she also didnt show me the exercise (here she interrupted me and said that i had said i had exercises already), and that i was really tired all the time and my psychiatrist wanted me to get blood work.

and she said "fine i can send you to pt and i can schedule bloodwork. stay here." and left me in the room and closed the door. so i waited.

and waited. and waited. and i didnt even know what i was waiting for and it was cold and i was tired and wanted to go home.

after almost half an hour i opened the door and found someone, and asked if they could find out why i was asked to wait.

and she said the doctor would be right in. and i heard her get the doctor and the doctor came in and said, "yes? what do you need?" and i said, "you asked me to stay here. what am i waiting for?"

and she said, "no i didnt. i said wait for 5 minutes for the bloodwork order to go through and then you can get it done at the lab."

that is not what she said. she said "stay here" and shut the door in my face.

so i said, "that's not what you said, you said to stay here."

and she walked away, saying sorry over her shoulder.

so then i went to phlebotomy and felt a bit vindicated when i started crying again when they couldnt find my order (they misheard my birthdate, we figured out) and so i explained that i had been left waiting for no reason and then the doctor said she hadnt told me that. and i apologized for crying.

and they told me not to worry about it because they knew just where i had just been and what i had been dealing with and then they badmouthed my doctor to each other the whole time they were drawing my blood. so it was nice to hear it wasnt just me.

i dont know what to do about it though. i wish doctor's visits were less difficult. i dont know what i am doing wrong.

(also this morning the smoke alarm kept chirping so i had to get up at 2 to change the battery and it didnt help so i put a pillow on my head for the rest of the night and in the morning at 6:30 it was still chirping so i took it down. and i had to bring in the dehumidifier i was disassembling on the concrete outside because it looked like rain and i cut my hand on this little metal vanes and dripped blood everywhere. and i still have to put the damn thing back together and they do not make it easy.)

i am so tired.

anyway. i hope the dehumidifier goes back together smoothly and that nothing else happens today.

[hellforcertain]

i like how one of the few reasons i can pinpoint when about i got sick is that i can use snowmageddon (late 2014/early 2015) as a starting point 

this is really long and i’d appreciate you not reblogging this but i don’t think i’ve ever written any of this out, and i would keep it private somewhere else but i kinda want to feel idk. validated? i never really put it into words like this until now. would also appreciate if you respond to this in some way (either a like or a reply) if you read it.

[cw for suicidal ideation in one part; skip the paragraph that begins “at some point that spring...”, after i talk abt my grandpa, if you don’t want to read it. it’s referenced in the next paragraph too. idk if there’s anything else i really need to warn for, but tell me if i do.]

i injured my knee thanksgiving 2013, when i was a sophomore. i was hiking in the hills around my parents’ house with some of my cousins, and it had snowed recently so everything was slick and slippery, and at one point my feet slid out from under me and i tumbled down an incline until my right knee connected with a tree. that thankfully stopped my fall but like, at what cost.

it was so bad that jo had to half-support me walking the couple blocks from our dorms to tufts to have an x-ray done in december 2013, which had been recommended by emerson’s health center (which was a joke; when i saw... i think an NP, she had to flip through a book until she found the “knee” section before she examined me). i couldn’t attend several classes of one of my courses the rest of that semester bcos it was in the building furthest from my dorm and i could barely walk there; i barely made it to the final. i never heard from the health center about the x-ray, so i figured that at least it wasn’t broken. it still bothered me but it became more manageable than it had been (not entirely tho bcos iirc i failed or didn’t complete two courses spring 2014, but that was also bcos of the undiagnosed adhd).

i moved directly into the studio from my sophomore dorm in may 2014, and lived there until june 2015 (which encompassed my junior year until i dropped out in november 2014).

my parents wanted me to fly down to spend a week in florida with them in august 2014, and i think this is what happened: the morning before i left on that flight i rolled off my futon badly and banged my bad knee against the (hardwood) floor really hard. i was in pain for a lot of that trip -- flying certainly didn’t help matters -- and when i got back it didn’t get better so i bought a cane a couple weeks before classes started back so i could get used to it before i had to use it to get to class.

(at the end of that trip, my mom forced me to let her clean out my ear with a qtip, jabbed it in too far and fucked up my ear, and then the next day i got on a plane back to boston and the issue got so bad i couldn’t walk down the street without holding onto a wall. i don’t think my eardrum burst or anything because it was better by the time i actually got to see a specialist about it and i haven’t suffered any permanent effects from it as far as i can tell, but at times it felt like it.)

i bought a cane in mid august 2014, and i know bcos i ordered it off amazon. the florida trip might have been in mid august, so there’s a possibility i banged my knee on the floor before the florida trip, and bought the cane when i realized i wouldn’t be able to walk in florida without it.

i know i reinjured my knee in august 2014, and i know i bought a cane then, and i know i also damaged my eardrum in august 2014 when i was in florida (well, my mom damaged it). i’m not sure exactly what order those took place in.

it got worse as the semester progressed, and i started doing less and less well in my courses, because not only was i dealing with the still-undiagnosed adhd, i was also in a lot of pain all the time. i remember making the conscious decision to stop going to my spanish class bcos the professor would have us stand up and walk around the class and talk to each other a lot and i couldn’t manage standing up for even that long, and i was so scattered and so fucked up from middle & high school that i couldn’t ask for help and the easier option was just to stop attending. i made the decision to go on medical leave late that semester -- probably in november or december 2014, i can’t remember which. there was the death of a family friend who i had been close to around that time too, and i was in too much pain and too swamped with trying to catch up on all these courses i hadn’t been attending to fly to florida and attend her funeral, which was another stone on top of all the others weighing me down (when i told my parents i had dropped out, i told them that it was her death that sent me into a breakdown, which wasn’t entirely a lie; i just didn’t tell them i’d been having a breakdown for months up until then).

i started getting sick and feeling pain that i couldn’t explain at all -- sure, i knew why my knee hurt, but i didn’t know why my joints were stiff and painful, and why i was hurting randomly separately from the joint pain. it got so bad that some days i had to crawl to get to the bathroom, and it was only a handful of steps away from my bed. i stopped doing my t shots bcos it was too much effort when i hurt so much already -- it got to the point that my periods started back up again, though i only had them very rarely. i think the only thing i managed to do was go to my shifts as desk guy in one of the dorms on campus.

when i went to visit my parents at some point, my mom thought it was just bcos i needed to get in shape and lose some weight to lessen the stress on my bad knee. tbh i don’t know when that happened, i just knew it was when i was still a student bcos i went to the gym once with a friend and it was really fuckin painful and terrible and just made everything worse. she might have said that when we were in florida, actually. idk.

living in the studio meant i lived totally alone, but jo was there a lot bcos i had an extra bed (i’d bought a loft bed bcos i wanted one and had never had one as a kid and this place had high ceilings, but i’d also bought a futon for cheap off a guy who was moving out of the building, which turned out to be a real blessing when i couldn’t make it up the ladder to the loft bed; when jo stayed at the computer labs late working on projects, they’d come crash on my loft bed bcos my building was near campus and by the time the labs closed, the t had stopped running) and i made kinda-friends with the security desk guy

that fall and winter i’d say i saw delivery guys more often than i saw my own friends (bcos i literally couldn’t handle the walking that grocery shopping would have required, and i didn’t know abt grocery delivery services at the time. idk if they were even a thing at the time). all “groceries” were bought at the cvs down the block, bcos they had things like butter and shredded cheese and tortillas (i ate a lot of tortillas that year) and pre-cut fruit, and the walgreens across the street from cvs had frozen burger patties that i think set off the smoke alarm every time i cooked them; anything else i ate was from delivery guys. i dissociated a lot that year, very very badly, and some delusional tendencies i’d had in high school came rearing back up. 

bcos i couldn’t do much else i threw myself into this site (esp on one of my sideblogs), and if you look at the amount of stuff i reblogged/posted then vs now you’d see that i had p much no other life. which was... not good but i also made some really good and valuable friendships then -- including em so like, not everything from then turned out bad. sadly, a lot of irl friendships stagnated, and it wasn’t the other party’s fault. i also played a lot of skyrim bcos it was one of like. two games i owned for my ps3, and even though the rest of me hurt a lot, my hands were surprisingly okay.

(i also went through a series of nb identities and pronouns that never really fit bcos that was the heyday of tumblr’s whole “if ur a trans man ur evil for wanting to be a man, u should be nb instead” phase and i was far too concerned with all that bcos like i said, i didn’t have much of a life outside this site at the time.)

i don’t recall much of thanksgiving or christmas breaks at my parents’, except that i got my name legally changed during i think christmas break 2014. iirc we had to reschedule my flight back to boston bcos i had to wait an extra day to be able to get everything done that i needed to, and bcos we needed to change the name on the flight. i remember crying at some official bcos they said that they couldn’t get me a new... driver’s license maybe? until a couple days down the road, but i had to be back for college by then and i have everything else done please just let me get my license today. and since it’s a small town in the south they totally folded, thankfully. i was just very stressed at that point, i hadn’t even meant to cry at them.

then snowmageddon happened in early 2015, and classes were cancelled and roads were closed and the t like, half shut down until like may. it was especially bad for me because most of my friends were in allston and they couldn’t exactly get downtown to hang out with me much. iirc, my friend who was an RA left college around the same time i did, maybe a few months before? i think i was still working desk shifts when they left, so it had to have been before i did.

march 2015 was good and bad: during jo’s spring break (and what would have been mine if i had still been in college), we escaped the snow and took their car on a roadtrip down the blue ridge parkway (well. that was the plan but it was closed thanks to the snow, so we drove down I-95 and ended up in asheville nc like two days after our leisurely road trip started. i turned 21 on that roadtrip, and so no longer had to rely on my friends to buy me alcohol, which was nice. we celebrated it at this local restaurant in whatever town we’d stopped at that night, and all i remember is that you could buy steaks from a counter at the front, and the drink i ordered for myself was incredibly orange.

my grandpa also died that march; he’d actually been dying since february, but i didn’t go to see him then; jo and i were in knoxville tn at one point, and my parents wanted me to drive up since knoxville is only like three hours from my hometown, but by then he was p much in a coma so it wouldn’t really be visiting, would it, and also it would have been mega unfair to drag jo into that mess. iirc his funeral was that april, bcos there was a funeral service at my parents’ church where he occasionally preached at, and then one at the mennonite church he attended after moving in with us, and then they had to get him to ohio for the big service (which was the one i attended).

(this was the grandpa who thought i was possessed by a demon for being trans so like. lmao. didn’t mourn him much then, and still haven’t.)

at some point that spring, after the spring break roadtrip and grandpa’s funeral, my dysphoria got really really really bad, bad enough to trigger the most suicidal episode i’d had since middle school/high school. it was a culmination of the negative thoughts and feelings i’d been having since i moved into this place (which had only worsened as i got sicker and when winter hit). i didn’t do anything, but i had to call a friend every time i left the building for like a week so that i didn’t walk into traffic. 

i moved out of the studio at the end of april or may of 2015, and went back to live with my parents for a bit because the lease for my text apartment didn’t start until september 2015 (since i was living with friends/former classmates who were still in school and weren’t going to be in boston until classes started back up in september). moving out was an Ordeal bcos my dad came up to help me and brought my sister, who hated boston so much that she was on the edge of a panic attack the whole time, which made her impossible to deal with. at one point we got into a fight over something super minor and it escalated and ended with her screaming at the top of her lungs, in my empty echoey studio that had the door open so god and all my neighbors could hear, that she wished i was dead. this was not the first or last time she expressed this sentiment, and was tame compared to some (like the time she said she’d stab me in my sleep). i told her i’d been suicidal weeks earlier and she left the building to go take something to the car and when i didn’t follow her (bcos i was cooling off), she freaked out and had a panic attack all over our dad. she didn’t tell him why, or that she was at fault, and when i came down a few minutes later he ripped into me until i stopped and told him what she had said. so, yknow. a fun final memory of that apartment.

i think that was when my mom finally acknowledged that my pain wasn’t just a weight thing, and that i should actually see someone when i got back to boston. my symptoms got worse too: i started having horrible pain in my hands, to the point that i couldn’t move them, and none of us really knew what to do. i found some compression gloves online and begged my mom to let me get them but she kept refusing because she was worried i’d mess my hands up worse with them, and i still don’t entirely understand that train of thought, because i was like, screaming crying at them because i was hurting so so much, and some compression gloves couldn’t have been worse than that (and i finally pointed out that they were gloves; i could take them off if they were hurting more than helping). they finally relented, thankfully. 

june 2015 was the first time i met em in person; i decided, almost on impulse, to take a week and drive down to florida and spend the week with them bcos they were living with their grandparents at the time and their grandparents were going to be out of town for like a week. they played a lot of fnv on their ps3 while i played don’t starve on my laptop. the place had a guest bedroom that was technically mine, but i don’t think i ever used it except to get changed; we tended to pass out in weird positions on em’s bed. we didn’t get much else done bcos i discovered that florida weather + my joints wasn’t a great combo, but it was still an amazing week.

that same summer i also got fitted for my knee brace. i think that same summer i got some treatments from a sports medicine doctor my mom is friends with. possibly steroid injections? i’d have to ask her. 

i moved into the medford house with some friends in september 2015, and dear lord was that a mess. the roommates were great, don’t get me wrong, but the house had mice we had to take care of, there was a gas leak at one point bcos the stove’s knobs didn’t work right and didn’t shut off the gas when we turned them off, the boiler was a broken leaky piece of shit that would shut itself off every like two days bcos the water level got so low (contrast the place we’re living in now, where we had to go put more water in the boiler maybe like. three times all winter), the landlord and his wife were total creeps and freaks -- he would only respond to my email even though my roommates tried to open lines of communication at various times, and one time i woke up with her in my bedroom bcos she was checking the radiator (which wasn’t working bcos the boiler wasn’t working and they refused to fix or replace it until winter was over) and she had the audacity to chew me out for my space heater. i was fucking sick, lady. give me a fucking break. the best thing, hands down, about the medford place was there was a corner store with a good deli across the street, so i could go in my pajamas to get a good sandwich and a box of fries. great place, great people.

i got referred to a rheumatologist that fall, and my first appointment with him was in november (i also at some point... i think in spring of 2015 started using testogel, because i wouldn’t have been able to get the stuff for injections refilled while i was in kentucky. i don’t remember when i switched back to injections but i did at some point while living at the medford house, which i once again was terrible at keeping up with).

at the time, my deadname was still on my insurance bcos even tho i’d changed my name earlier that year, i was still on my parents’ insurance and my dad wouldn’t fucking change my name there and wouldn’t give me the information to do it myself. my rheumatologist took one look at me and how i was responding to being called my deadname, and he asked if there was another name i went by that i’d be more comfortable with, and i was rarely called my deadname again after that (and only by a couple nurses until they got to know me better). ofc that stopped being an issue when i switched to my own masshealth plan (in early 2017 i think?).

he listened to the whole mess of a story, felt my joints, and then poked at the middle of my chest (which i now know is a common fibro trigger point). when i recoiled back bcos that hurt far more than it should have, he said “yep that looks fibro-y.” i don’t remember if i suggested fibro and/or rheumatoid arthritis, or if he did. he prescribed me some medications -- including tramadol, my savior that winter. i’d been taking tramadol already bcos i’d had some left over from... i think lasik, and a friend had given me some percocet for very bad days. i was so unused to the tramadol back then that it’d throw me for a loop, occasionally make me nauseated, and also knock me out. it was p great.

back then i’d have to ask my roommate danny to open like, water or pop bottles nine times out of ten bcos i just couldn’t. now, i can’t remember the last time i had a serious problem opening bottles on a consistent basis. there have been some bad days where i couldn’t, but it’s not like that’s all the time.

i improved in fits and starts after that; i can’t remember all the meds i tried with him, but i’m sure they’re in a file somewhere that i could request. i still wasn’t doing anywhere near good, but it was better than before -- if only, maybe, bcos i wasn’t dealing with this totally on my own. but you know what didn’t help? that house’s terrible fucking boiler. we’d wake up some days in the middle of winter and it’d be in the 50s inside the house, and i was the only one who knew how to fix the boiler (i’d taught the roommates, including the subletter we got when danny left for a semester in LA, but apparently the only one who could go down the stairs to take care of it was the fuckin cripple).

spring 2016 was awesome bcos i’d gotten a ps4 and destiny for christmas, and the subletter we got had two cats who i loved and who loved me, and everything was beautiful even tho i definitely still hurt a lot. i can’t remember much of note during this period, health-wise. it was mostly more of the same, but on top of it was trying to balance playing a shooter and having shitty hands that didn’t want me down anything with them.

summer 2016, when i was still in the medford house, em came to visit me (among other people -- they roadtripped up over the course of a couple weeks) and spent several days there. i had plans to take them to do touristy stuff in boston, but that never happened haha. and like we don’t have a solid date on when we got together bcos long-distance stuff can be fuzzy about things like that but that visit was our first kiss.

in september 2016 i moved into the allston apartment, and the less i say about that the better. i started back with a therapist in like february 2017; i hadn’t been to a therapist for years by this time, bcos my previous therapist had moved to a different office in the network and then left the area and i had never gotten back in touch with her after she moved to the other office. i also started on testopel, because injections were once again not working out.

that apartment was p much like living in the studio bcos even tho i had two roommates, it was an apartment i’d found in an emerson group centered on finding roommates, so i hadn’t known either of them beforehand; i wasn’t really living with them; we just happened to share some common spaces. health-wise i improved some as we found medications that worked for me, but i was still not doing even close to good. i had trouble going grocery shopping even though the grocery store was only a handful of blocks away because various parts of me would hurt too much to handle it, and by the time i was halfway home i would be almost dead. so, yknow. not a great time overall.

in september of 2017 i moved into this house with em and jo, and it’s been a fantastic decision bcos im finally living with people who care about me and will kick my ass into shape if i need it. em finally made me go to my rheumatologist and be like “so i know i’ve been saying i’ve been fine but i moved in with my partner recently and they’ve pointed out that im doing less fine than i said bcos i’d brushed off a lot of things as normal that they’ve told me are not, in fact, normal”, which was when he prescribed flexeril, and i think that’s helped me more than almost anything else has. holy shit. im taking a higher dose than my father (who’s like 6′1″ and has at least a hundred pounds on me) can handle but it’s working for me. i also went back to t injections a couple months ago bcos i didn’t enjoy missing everything for a week bcos it took forever for the testopel spot to heal, and i couldn’t sit on the spot until it healed; plus now that i’m living with em, they can remind me when i forget to do my shot. also, after a lot of fits and starts and panic over the last few years, im finally talking with a surgeon about top surgery. 

overall like, i went back and looked at a lot of posts i made several years ago to get dates for this point, and i can barely recognize myself in some of those posts. my illnesses had ground everything else away, until all that was the physical pain and the emotional anguish, and i wish i could tell my past self that it gets better: that he’ll find medications that work for him and he’ll move in with people who he loves and love him back, and that it’s not all sunshine and rainbows here in 2018 but it’s so much better. 2015 me definitely deserved that.

and that’s true: that i’m not cured, and i still have very bad days, but i’m also having more and more good days -- days that were unthinkable back then. i’m on medications that help me physically, and i’ve been diagnosed with adhd and am on a medication that helps me mentally. when i flew down to kentucky earlier this month to attend my sister’s graduation, my dad remarked on how much better i was walking and moving just compared to thanksgiving. i can’t even imagine comparing myself now to myself a few years ago. i think i’m going to save this post so that when i’m feeling down about being sick, i can remind myself how far i’ve come, and how much i’ve weathered so far; whatever storm comes next, i think i’ll be able to handle it.

idk where i was trying to go with this, but it ended up a super overly long chronicle of the last few years. so uh. yeah. like i mentioned before, i’d appreciate if you show that you read all this, either with a like or a reply, esp if you get to the end