monachopsis-11

[monachopsis-11]

becoming an adult cheat sheet!

learn to coupon

what to do when you can’t afford therapy

cleaning your bathroom

what to do when you can’t pay your bills

stress management

quick fix meals

find out if you’re paying too much for your cell phone bill

resume workshop

organize your closet

how to take care of yourself when you’re sick

what you should bring to a doctor’s appointment

what’s a mortgage?

how to pick a health insurance plan

hotlines list

your first gynecology appointment

what to do if the cops pull you over

things to have in your car in case of emergency

my moving out masterpost

how to make friends as an adult (video)

how to do taxes (video)

recommended reads for surviving adulthood (video)

change a flat tire (video)

how to do laundry (video)

opening a bank account (video)

laundry cheat sheet

recipes masterpost

tricks to help you sleep more

what the fuck should you make for dinner?

where should you go for drinks?

alcohol: know your limits

easy makeup tips

find seat maps for your flight

self-defense tips

prevent hangovers

workout masterpost

how to write a check

career builder

browse careers

birth control information

financial management software & app (free)

my mental health masterpost

my college applications masterpost

how to jumpstart a car

sex ed masterpost

[monachopsis-11]

This might sound weird but does anyone have advice for coping with your baseline improving? A lot of my physical disabilities got bad around 1.5-2 years ago but lately I’ve been feeling a lot better. My energy has been higher and I’m just generally able to do more things without causing flare ups as long as I’m somewhat careful.

A lot of this is stuff I legitimately didn’t think I’d ever be able to do again like working out (as long as I avoid explicit cardio and certain movements) but it’s making it hard for me to figure out where I am with my disability. I am by no means magically cured and I know that but it still feels really invalidating and there are new things I want to try to learn to do (skateboarding, surfing, working out) that I don’t know how to wrap my head around.

There are definitely still risks and I’ve hurt myself a few times but I’m getting better at sensing those limits… all around though it’s still been hard to process after thinking I would never learn those things and making me feel like I’m faking now or I was in the past.

[monachopsis-11]

I was just wondering if anyone had advice for starting mental health medication (anxiety and depression) I think I’m going to do it but I was wondering if there were things I should know first or that other people wish they knew before starting.

[monachopsis-11]

Does anyone else with fibromyalgia get severe pain flare ups specifically in their legs? It happens to me periodically, sometimes if I stand/walk too much but other times it can be from sitting on an uncomfortable seat or in a bad position, or just randomly.

Anyway it usually starts at my lower back and affects my hips, knees, ankles and all the muscles in my leg to the point where I can barely walk. It’s probably like a 7-8 on average when it happens and I was curious if this is something other people experience.

I had it as a kid and was told it was growing pains but it’s gotten worse and more frequent as I’ve gotten older.

[monachopsis-11]

I groomed my dog by myself for the first time today (full haircut) and it took 6.5 hours from start to finish (including breaks.)

I had to brush him out first and then I was giving him a haircut outside sitting on the ground, two hours into that the clippers died and I had to charge them like four more times in short bursts in order to finish.

I also had to take a half hour break for a zoom meeting which I did outside covered in dog hair before finally finishing grooming the dog and going inside to give him a bath, shower, and clean his ears.

It didn’t hit me too much until afterwards but I am in so much pain. I can barely walk, and I have this stabbing pain in my lower back and shoulder every time I move a certain way which is limiting my range of motion (ongoing problem but this made it so much worse.) Basically I saved some money but now I feel awful 😣

[monachopsis-11]

I have two things I could really use advice on if anyone has any experience with them.

1. I’m considering anxiety medication, I had a traumatic experience several months ago and since then my anxiety has been significantly worse to the point where it’s hard to do anything out of my house by myself because I’m so stressed and scared.

Obviously I know this won’t fix it but I’ve been in therapy forever and it only does so much so I’d be really curious to hear other people’s experiences with anxiety medication and if it makes a difference?

Also, I know this is really unusual but I’ve never taken prescription medication for anything in my whole life so the whole thing really freaks me out. My mom was one of those people who considered medication a last result and there was never a time I really needed it so I never had it. Now the idea of it, especially the side affects, really freaks me out. I’ve literally never had anything besides Advil in my life but it’s gotten to a point where I feel like it could benefit me. Anyway, information, experiences, advice etc. would all be so appreciated.

2. I am trying to decide whether to move forward with medical stuff. I have been trying to get help for chronic illness stuff for a year now and I’ve made basically no progress.

My GP, Rheumatologist, and Cardiologist have all (so far) been useless. I can’t get a diagnosis or any valid advice whatsoever and it being a new year means I haven’t met my deductible yet so my upcoming appointments will be expensive.

I’m mostly going through testing to try and get a POTS diagnosis (which he already thinks I don’t have because he measured my heart rate lying down and then after I’d already been standing for a minute and it was starting to go back down) and Fibromyalgia.

Mostly I’m just trying to get an idea of potential benefits to a professional diagnosis such as for treatment, eligibility for any other programs etc. If anyone has any information that might be helpful please let me know.

Anyway, I know this was long but thank you to anyone who took the time to read and potentially respond 🧡🧡🧡

[monachopsis-11]

Anyone else do that thing where they avoid all their triggers and then think they’re faking their disabilities?

[monachopsis-11]

hate when people are like "trust your gut! listen to your intuition!" like okay well my gut is telling me every person i lay eyes on is hunting me for sport and my intuition is saying i should find a secluded cave and live there forever so what do you suggest i do with that information

[monachopsis-11]

Having dreams crushed by disability is such a deeply traumatic experience, the realization that you’ll never be able to do the thing you want most in life because your body isn’t able to handle it. Waking up the day after you received the news and feeling that utter sense of heartbreak in your chest. Watching people go on and do those things while you sit on the sidelines, forced to watch bitterly. That feeling of being trapped, imprisoned by your inability to do what you love. The grief, the anger, the sadness. All because your body doesn’t allow you to.

[monachopsis-11]

in real life you will probably not respond to harassment in a sexy, clever, scripted way where you come out with the upper hand and everyone claps. you will freeze up and your moment will pass, or your voice will shake when you tell them to stop and you’ll realize two minutes later that you’re gross and sweaty and sticky from the adrenaline. maybe you’ll be on the ball and answer in a way you actually think is pretty smart and get ignored, or they’ll get more aggressive when you mouth off to them. you almost never will walk away feeling victorious. you walk away feeling uncomfortable and relieved that it’s over. you’ll think about it later and imagine that maybe you could have said something else. maybe you’ll feel ashamed that you weren’t quicker-witted, weren’t able to cut them down to size, weren’t able to avoid that lingering sick feeling in the pit of your stomach, as though there’s some kind of magical words you could have said that would have left you feeling less powerless. there really aren’t. 

[monachopsis-11]

Literally the best metaphor for being chronically ill 😂

Nothing is more annoying than electronics that lose charge while not in use. How do you get discharged just laying there. Don't piss me off

[monachopsis-11]

Is it even possible to diagnose Osteoarthritis without imaging? It seems like this would involve X-ray, MRI, or some kind of testing beyond just a blood test. I’m pretty sure the whole reason my doctor thinks this is because I played sports as a kid and have joint pain.

The only testing I really have on record is a bunch of bloodwork so I’m incredibly confused that my Rheumatologist brought this up out of the blue after maybe mentioning it once in our first appointment?

While I have joint pain it is secondary to the muscle pain and soreness which is constant and I’ve never had any issues with range of motion, swelling, grating sensation or anything that seems common with OA?

[monachopsis-11]

I’m still waiting on records but I was able to make a patient portal and honestly I just feel worse. I looked at my blood test results, which no one ever went over with me, and some things were out of the normal range I just have no idea what it means so now I’m not sure if those are actual problems or not.

In addition the patient notes I can access have no useful detail besides mentioning fibromyalgia and osteoarthritis (which I’m 99% sure I do not have) but it doesn’t look like an official diagnosis just notes/impressions?

Honestly this has left me feeling so horrible, I expected a lot of conflict in appointments with not being believed etc. but this confusion and not having anything explained to me feels even worse and I don’t know what to do about it. I didn’t even have a chance to confront this because I didn’t know any of this was happening and still don’t really know what’s going on?

[monachopsis-11]

I need to rant because I just had the most confusing doctors appointment ever with my rheumatologist.

So for background we have only had one appointment in the past where we talked about fibromyalgia and possibly ME/CFS. I’ve been waiting months for a follow up appointment because there were things she wanted me to try/schedule first.

Just had the follow up and I was trying to ask about follow up to get official diagnoses and she just acted like she already made those diagnosis and mentioned osteoarthritis out of the blue and I’m so confused.

From my understanding I would think it would be hard to diagnose Fibromyalgia (although I’ve had some other testing on file she might’ve looked at and had some questionnaires and in person examination from my primary care doctor) in one visit and wouldn’t even think an ME/CFS diagnosis would be at all possible.

I also don’t think I have osteoarthritis just because I have joint pain as fibromyalgia can cause joint pain and my symptoms fit with fibromyalgia but not Osteoarthritis? I have not had any physical examinations that would relate to OA.

Honestly I’m not sure if I was somehow misunderstanding something or what but I am left reeling after this appointment. I just feel confused honestly and I’m not sure what to think of any of it so if you have advice I would be really grateful.

[monachopsis-11]

Hey sorry for unrequested advice, but i am working on going through something similar. I happened on your post about making way with Drs and i just wanted to give a suggestion. If it is pots you might be like me and have a relatively normal loop/holter monitor and echo. The easiest way to test for pots is a tilt table test (basically they have you vertical without letting you do the self adaptations while also having you strapped down so if something [like syncope] does happen you won't get hurt)

I hope you get answers quickly and easily and they are the right ones! Good luck!

Don’t apologize this is super helpful and yes it is for POTS lol, I’m hoping the holster monitor will catch some high heart rate stuff since I’m wearing it for a week, at least enough for them to do a tilt table test as well.

[monachopsis-11]

Thought I’d post a little update, I’m finally making progress with doctors, specifically my cardiologist.

I have appointments to get a heart rate monitor that I’ll wear 24/7 for a week and an appointment for an echo and stress test so hopefully that will help get an actual diagnosis.

I’m like 99% sure I have POTS but if it’s not that there’s definitely something else going on so I’m hoping I’ll finally get answers.

I also have a second appointment with a rheumatologist so I’m hopeful that will do something as well.

[monachopsis-11]

Air hunger is the worst symptom ever. Would take a pain flare over this any day.