#??? possibly allergy idk most likely just really sensitive stomach

[han-solo-cant-dance]

After having a poor reaction to regular milk, lactose free milk, and almond milk and not liking the taste of coconut or oat I finally got my hands on rice milk and I could cry. I've missed cereal so much and finally found milk that works.

Its the small things sometimes.

[izzy-b-hands]

Quarantine Tag Game

Tagged by @dabitchisback thank you!! I needed something to get me through this very slow morning of work!

Under a cut because y’all know I’m a wordy motherfucker lol.

Are you staying at home from school/work? 

Yes I am! I actually requested to be moved to work from home in part due to the COVID-19 stuff and due to some coworkers behaving like high schoolers and flat out bullying me (and I had had enough of that shit once it started making it hard to do my job lmao.) 

So just as they were setting it up for me, the clinic suddenly started realizing how serious this was and all of a sudden, they could find all the money for all the work from home equipment for a bunch of us in the non-direct patient contact side of things (funny, considering I’d begged to work from home over a year ago due to how bad my anxiety was getting with coworkers and patients when I was still in the direct patient contact part of it all, even offered to pay for the equipment, and was told it would always be too expensive and never be in the cards, even after my therapist recommended it for the sake of my mental health and blood pressure. Funny. that. Real funny.) 

If you’re staying home, who’s there with you?

Mostly my cat, Nisha. My mum works at the same clinic, but is front desk, so they’re rotating who goes in to the clinic and then who gets days off “to keep the financial health of the clinic” aka begging anyone who stays home for a day off (or in my sector who takes a day off due to reduced call volume) to take that time unpaid and not use PTO or EST...but we both have that time to use, so it is Being Used or we won’t be able to keep the lights on or the condo lmao. However, she does have assigned days off coming up, so on the weekend and those days off, my mum is here too. 

Are you a homebody?

Ohmygod yeah. The older I get, the more I dislike going out in general like. I work a full time job, I barely have time for chores or relaxation after, even now being work from home because scared patients asking you questions you can’t answer or don’t have an answer to (because no one has answers right now) just...idk how to explain it. But it gets weirdly exhausting, even though it sounds like it shouldn’t, and by the end of my 8 hours I just wanna lie on the floor and nap usually. So going out has never been my thing too much, because then my writing/chores/nap time gets neglected lol. I don’t mind the occasional appetizers and drinks night with mum and her friend, back when we could go out, but tbh it’s just nicer still to drink at home. Even on vacation, I go out more than usual, but also if there’s a night we can drink in the hotel with the mini bar, and just enjoy being somewhere other than home...I will take that night in a heartbeat. 

My anxiety also doesn’t love going out, but I’ve been working and getting better at dealing with that. Of course, current times might mean a bit of a setback, but I’m going to work really hard for it not to be too bad. I haven’t been in six years of therapy for nothing lol.

An event that you were looking forward to that got cancelled?

Um...does my root canal count? And I wasn’t really looking forward to it per se, I just am afraid of the tooth getting worse and starting to have worse pain. 

Other than that, it hasn’t been cancelled yet because we’re playing it all by ear (but I admit I’m afraid it probably won’t happen due to the virus stuff, even if it’s over by the time this thing was supposed to happen), but I have a trip to New York City planned with a good friend in August. Even if things have calmed down, I know New York has gotten hit extremely hard, and if they’re still fighting with the aftereffects of it all...might not be fully open for business by August so to speak. And besides, with everything as it is right now, and the talk of a vaccine being at minimum over a year away, with periods of possible social distancing needed even if this calms down but possibly goes through flare ups until a vaccine is ready...travel might not be back to normal for awhile, I can’t say more than anyone else on that I suppose. I’d really like it to be, by August, I admit that as selfish as it is. I was just really looking forward to it, kind of living for it even, and now...yeah. 

But, better to be at home and healthy in the end, travel insurance exists for a reason, and trips can always be rescheduled. 

What movies have you watched recently?

Haunt (Mum and I never got to see it when it was in theaters), Queen Rock Montreal (my go to oh no I’m sad movie), Tammy (a fave of mum’s, and we both just like Melissa McCarthy in general), and Jojo Rabbit. I’ve got a bunch I bought and rented just last night too (maybe not a smart financial decision, but I’ll deal with that when I have to lmao), since it feels smart of have a backlog of stuff to watch right now.

What shows are you watching?

Mostly rewatching the IT Crowd, the Office, Travel Man, and other tried and true faves. It helps mum to relax since she loves all those too (including any episodes of 8 out of 9 Cats Does Countdown I can find, I finally got her hooked on that!) Basically if it has a chance of Richard Ayoade or enough episodes to keep us going for a bit, then it’s on the list to watch.

What music are you listening to?

So many. No, but legit, I’ve been all over on Spotify as of late, especially searching for music to help the fic writing. A lot of Queen, Elton, Clams Casino, The Weeknd, Kendrick Lamar, David Byrne, Childish Gambino, St. Vincent, and Moses Sumney especially.

What are you reading?

Fanfic, trusted news sources like AP, Reuters, updates from WHO, wanting to reread Mercury and Me and Elton John’s Me, and really need to get back into reading And The Band Played on by Randy Shilts (started it right as shit started to get wild, so it got put to the side, but I want to finish it asap.) 

What are you doing for self-care?

Trying to enjoy that this is also the trial time to see if I want to make work from permanent (work is making me make it a trial, I’ve wanted to work from home for years so...yes is the answer to that lol) and what I can do now that I’m home, like work more on my writing and music. Not to mention, eating foods that normally upset my stomach/I have sensitivities to like meat and dairy (I might be developing straight up allergies to them, but we all know I can’t afford to see an allergist lmao) but that since I’m safe at home where I be sick and still work...I can indulge. I can also play music more and movies so long as I pause them if I get a phone call during work hours, so overall I’ve been a lot more relaxed and my BP is down during work as a result, which is something I’ve never really felt before in my life, and I’m rather enjoying. 

Aside from that, video games have also made a resurgence in my life, especially Saints Row, and that’s been fun as well. 

All of this in between taking care of Mum of course, who worries and panics, and tends to believe everything she hears and reads and watches without thinking critically or carefully, so...that’s been a thing. 

Actual therapy appointments would be my best self care of course, but the last few have been cancelled due to everything going on. This week, however, my appointment is supposed to be done via telecommute and I should finally get to catch up with my doctor, which I admit I need pretty desperately right now. It’s getting hard feeling like I’m on my own, helping soothe others but struggling to soothe myself most of the time. But, c’est la vie, right?

Tagging (if y’all feel up to it and wanna!): @skylinepigeon, @freebooter4ever, @bearkare, @rathernotmyname, @galaxy-starheart, and @youdontrememberthesomme

[hazel2468]

It’s 5AM and I’m Chronically Ill

It is four-thirty in the morning on a Monday. I just emailed out of work for the third time this month (field placement). And it’s times like this that remind me that I really am sick. It’s not something I ever forget, but when I’m having a good day or a good week, or even sometimes a good month (rare), I forget how vulnerable I am. (Cont. under the cut)

Something I don’t think that people really understand is that, when you are chronically ill, common colds and headaches and allergies all pile on top of what you are already dealing with. Even my GF, who is one of the most understanding and loving people when it comes to my illness, said that “It’s just a cold” when she got sick last week and I expressed concerns about catching it (which I have. Great.) 

For me, it isn’t just a cold. It’s lungs that go into panic mode and then refuse to work properly for months, months after the illness itself has passed. It’s a body that is already more susceptible to weird temperature changes and exhaustion putting in over-time. It’s the knowledge that if this common cold goes a little too deep, a little too fast, I could end up in the hospital with a machine breathing for me, because my lungs are at 75% on the very best day possible and at 60-50% on a normal day. It’s near-constant painful, wheezing coughs that make my ribs shake and render me voiceless. It’s knowing that I am getting sick because I have less and less spoons in the days leading up to it, and not being able to do anything about it except make sure my inhaler is fresh, prepped, and nearby in case my body decides to do something especially shitty. It’s making sure I have a fresh garbage bag in, just in case my lungs and stomach team up and make me cough so hard I vomit. 

Healthy people don’t understand that. They see a common cold as just that- something common. “Aw, I’m sorry! At least it’ll be gone in like, a week!” No. I had a cold in November of 2017, and I didn’t stop coughing until freakin’ June, 2018. And by “stop coughing”, I mean people stopped asking me if I was sick and assumed it was an allergy cough because it was less constant and less painful. People see me with my rescue inhaler, my daily inhaler, and my thyroid pills and assume that everything is fixed, and it isn’t. Those keep me functioning, they keep me able to do basic things, and they’ve quite literally kept me alive for years. But the symptoms are still there- I still have fatigue, I’m still super sensitive to cold (fun fact, a weird symptom of hypothyroid is always being colder than everyone else! The more you know!) and I still have days where my mood just drops, hard, and leaves me feeling empty and awful. My inhalers let me do things like walk outside for more than ten minutes, let me maybe take one flight of stairs on a good day. They let me sing. But when something gets me, even a common cold, it goes right to my lungs, and my meds can’t help me. All I can do is go to the doctor, let her tell me that my lungs sound clogged, working at less than safe capacity, and pump me full of steroids. And if those don’t work, antibiotics always do- the downside being that steroids never work and I always end up on antibiotics. Which fucks with my birth control, which fucks with my cramps and stomach regularity, which- well, you get the picture. 

I’ve never really talked about my chronic illness before, I don’t think (to be fair it is almost 5 am and I am feverish so IDK what I’ve talked about before), but I’ve wanted to for a while. A lot of you here on tumblr share experiences like mine, and you talk about the shit that happens and I read it, and it just... makes sense. I relate to so much of it. Fuck, when I first read about spoon theory for the first time I just sat there wondering WHY I hadn’t heard about this before, because it fit me so well. 

And sometimes I wonder if I have a right to identify with the chronically ill community, especially on good days. There are days when I have more spoons than I need- they’re still limited, I can’t just go take a hike or run off on a random adventure, but I get everything done and have some to spare. I’m privileged that I have access to healthcare and medication, and that I am (for the most part) well controlled enough that I can predict my flare-ups. But it’s also something that is constant, it’s chronic, it’s always present and always there to influence me and what I am capable of. And I guess because it is hitting me particularly hard right now, I just wanted to talk about it. 

And at 5 am the only people I know who are awake are you, so. 

[thisbibliomaniac]

Answer them all or I send the Bad Emojis

I hate you so much Head: How do you like to wear your hair? Lots of ways!!!! It's naturally curly, and has a lotof body when I straighten or curl it, so most things work ^-^what hairstyles do you find attractive? On guys? Shorter, usually. Have you ever wanted to do something drastic to your face/hair? Gosh yes What's your favorite part of your face? I have good eyebrows for a redhead. Otherwise, I could do away with the whole face. Ears: What's your favorite music genre? I like Broadway Do you have any piercings? Ears Favorite non musical sound? Cats Eyes: What's your favorite color? Pink!!! Time of day, aesthetically? Dusk Animal you find the prettiest? Cats. I'm a cat person. Cats are God's greatest gift. What do you find attractive in a person? A lot of things, but a good sense of humor is at the top of the list. Nose: What's your favorite smell? Honeysuckle!!! Least favorite? Rear diff oil. What scent do you find comforting? Wood smoke Is there an outdoorsy smell that appeals to you? (beaches, pine trees, sand, ect.) Just out door in general Boop? Y/N I have no idea what this means, please don't explain. Mouth: Do you have a favorite taste? Vanilla Least? Hunan gold. Do you like kisses? Hershey's? Yes. How do you feel about teeth? Keep them to yourself. Do wear lipstick? Yes What's your favorite shade? More subdued ones Neck: Where are you most sensitive? ??? How deep is your voice? Depends. Do you like your voice? Nooo Can you sing? So I'm told Shoulders: Do you consider yourself to be easily stressed out? Heck yes. Arms: Are you strong, physically? Nope Do you think you give good hugs? Idk no one hugs me except Hobbs when she visits 💖Wrists: Do you wear a lot of jewelry? I love wearing jewelry, but it's hard at my current job What kind? I love big earrings!!! Is there a certain type of jewelry that you just can't stop getting? I love big earrings!!!!Hands: Are you artsy? Yes Do you play any sort of instrument? Piano Do you draw? I wish :/ Do you write? Not officially Do you have soft hands? Yes, always. I don't understand how, because I really always do, short of when I have chemical burns, which has happened twice, and even when I used to have a job doing dishes all day. Do your hands ever idle or do you always have to be doing something with them? Always doing something. Always. Fingers: Do you paint your nails? Yes Are they painted now? Yes What color? Glitter Chest: Where do you feel safest? ¯\_(ツ)_/¯  What comforts you the most? ¯\_(ツ)_/¯  How do you usually calm down? Idk, yelling? Stomach: What's your favorite thing to eat? You can do anything with buffalo chicken and I'm happy What gives you butterflies? Idek Have you ever been on a roller coaster? Yes. Didn't like it. Do you have any food allergies? Not officially, possibly walnuts? Hips: Do you put your hands on your hips a lot? Yes Do you close doors and things with your hips? Lol yes Can you dance? Idk I'm Baptist Have you tried? No, but I'd like to take ballroom classes. I take that back, Ive taken square dancing Back: What position do you sleep in? Side Got any tattoos? NoButt: Ever really hurt yourself slipping on something? Lol yes. Scraped my face off. Ever accidentally sit on something you really wish you hadn't? I think I ahev?Legs: Are you a strong runner? Noooo How flexible are you? I am not. Do you consider yourself to be a clumsy person? Only sometimes??? Some days are bad. Have you ever broken a bone? *Knock on wood* Ankles: Do you feel like you have enough support? Wouldn't really know what that looks like tbh What would you consider a weak spot, physical or mental? All of them Have you ever broken something on purpose? (Smashed a window, knocked over a lamp, ect.) Not in like a destructive manner, but if I'm throwing something away, I prefer to break it first. Feet: Do you ever go outside barefoot? Yesssss Do you like slippers? Nooooo Have you ever stepped on a lego or something similarly bad? My carpet is full of small bits of sharp metal. Toes: Are you a risk taker? No How tall are you? Average What's the worst thing you've ever stubbed your toe on? The heavy chair at the studio Can you pick things up with your feet? Yes Happy?

[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.