Idk If I've Posted About This Before, But The Most Important Thing I've Learned In 2022 (The Year Of

Idk if I've posted about this before, but the most important thing I've learned in 2022 (The Year Of Never Ending Doctors' Visits) is to leave every medical appointment with a clear-cut set of next steps. When you have a chronic health issue, it's not just as simple as telling the doctor what's wrong and letting them take it from there.

If you go in for an undiagnosed issue, your should leave with:

An investigative plan: Orders for labs, imaging, or specialist referrals to try and figure out what's causing the problem. If your doctor doesn't want to order tests, ask why. It could be an insurance issue (e.g. tests denied unless front line treatments have failed), or it could be a bias issue. If it's a bias issue, things get more complicated, but the first step towards adequate care is asking your doctor to note that you requested testing for the issue and they denied it on the basis of [whatever]. I have some tips for next steps in these situations, so feel free to shoot me a message.

A "what-if" follow up plan: Ask your doctor, "What if the labs/scans/etc. come back negative or inconclusive? What if this treatment plan is not effective after [preestablished length of time]? What's the next step?" and make sure the next steps are noted. This helps keep you on your doctors' radar until you have an effective care plan in place.

A symptom management plan: Really spell out the effect the symptoms are having on your daily life. Let the doctor know you're fully invested in long term recovery, but that you need something to help you live your life as "normally" as possible until the long term treatment plan can be established and take effect. This could be medication, assistive devices, FMLA or other documentation for work/school, etc.

If you go in for a diagnosed issue, swap out the investigative plan for a long-term treatment plan. The goal should be to reduce your symptoms or prevent progression, if possible. For some conditions, this looks pretty similar to symptom management.

This has been working pretty well for me lately. At the end of my appointments, I verbally summarize my understanding, like "Okay, so we're trying to figure out the cause of my [symptom], and you've ordered XYZ tests. If nothing comes back abnormal, you'll [order different tests, refer to specialist, etc.]. In the meantime, I can manage it with [medication, lifestyle change(s), adaptive device, etc.]. Is that a good summary of our plan?"

Rinse & repeat at any/all follow up visits.

More Posts from Sonny-ray-of-goth and Others

2 years ago

hate hate hate it when adults tell younger people they're "too young to experience (x.)"

pain, memory loss, mobility aids, and disability are not exclusive to older people. young people can be disabled.

im nearly sixteen, and i have a hellish mixture of scoliosis and kyphosis. on top of that, i experience amnesia DAILY. my back doesnt hurt every day, and my brain doesnt refuse to remember important things just for you to say only old people can experience these things.


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3 years ago

“why bother writing bisexual characters if they just end up in a m/f relationship”

my dude

my guy

my pal

stop talking forever

2 years ago

Me when I went to the endocrinologist and they assumed I didn’t know what my autoimmune disorder was. Not like I’ve been dealing with it for 4 years.

Didn’t even think to check me for what I was soon after diagnosed with by a geneticist.

My doctor shocked I know more about my debilitating condition than him

My Doctor Shocked I Know More About My Debilitating Condition Than Him

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2 years ago

dismantle the idea that you should love your body because "it works". bodies that don't work deserve love too. disabled and chronically ill bodies are just as deserving of love as abled bodies.

2 years ago

Just remembering the times I’ve actively been falling asleep in front of a doctor due to my chronic fatigue but then they still don’t do anything but tell me I need more sleep

Which isn’t unreasonable but I am a student. An AP GT student who falls asleep during class as well so I don’t get the notes or miss the lesson so I have to come in after school to get notes (or dig around the online classroom for the teachers that actually post their notes) and then have to teach myself the lesson.

Then I have to do the homework which is difficult for me to focus on (we think it’s undiagnosed adhd given other symptoms) and trying to complete the assignment takes a minimum of an hour. Give or take given exhaustion and falling asleep reading the questions, pain in my wrist, fingers, hands, etc, or having to do other things.

Then multiple by the four educational classes I’m in (thank god French doesn’t have homework)

I get as much sleep as I can

All this to say, I’m glad it’s summer and I’m glad I was finally diagnosed (maybe collegeboard will finally consider accommodating me)


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2 years ago

Reblog to give the person you reblogged it from the energy to do one (1) chore or maybe many

4 years ago

Ummm hi? My name is Sonny (pronounced sunny) and I use all pronouns with a preference of they/them.

And uh these are the flags I associate with

- ace

Ummm Hi? My Name Is Sonny (pronounced Sunny) And I Use All Pronouns With A Preference Of They/them.

- aro

Ummm Hi? My Name Is Sonny (pronounced Sunny) And I Use All Pronouns With A Preference Of They/them.

- non-binary

Ummm Hi? My Name Is Sonny (pronounced Sunny) And I Use All Pronouns With A Preference Of They/them.

- androgyne

Ummm Hi? My Name Is Sonny (pronounced Sunny) And I Use All Pronouns With A Preference Of They/them.

- trans

Ummm Hi? My Name Is Sonny (pronounced Sunny) And I Use All Pronouns With A Preference Of They/them.

- aroace

Ummm Hi? My Name Is Sonny (pronounced Sunny) And I Use All Pronouns With A Preference Of They/them.

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2 years ago

Shout out to the girl in my class who loved to bring cookies and brownies and stuff to school to share with the class and when she found out I was allergic to wheat and soy she started bringing me skittles everytime she brought in baked goods so I wouldn’t be left out

Literally such a beacon of light, I love you so much

5 years ago

Demons & Drag pt. 3

DISCLAIMER!!!! TRANSPHOBIC SLUR IS USED. IM SORRY, I HATE IT TOO.

Also a Disney song is quoted. I didn’t come up with it obviously.

Surri sat in the back row of Leh, Jem’s club/bar. She watched as Anitri talked to some of the drag queens of to the side, noticing his occasional glances in her direction.

He had already briefed her on their target for tonight.

Lacy Budwick, a genocidal politician, who is allegedly supposed to show up here tonight for a meeting.

Jem insisted that the twins tell them when they plan to “get rid of” someone so they can advise them on where and how, mostly to ensure they don’t ruin anymore of their carpet.

Surri watched the specific drag queen that Jem had told her went by Mother of F’s, she was a tall lady with a white wig and dramatic green makeup. She had on a skin tight, emerald green dress that only reached her mid thigh. She had chains dangling around her neck and a smile on her face as she greeted patrons that came through the door.

After awhile, a lady in a power suit with blonde hair in what Surri could only describe as a Karen bob, with a scar along her jaw, walked through the door.

Target acquired.

“Welcome to Leh, I hope you have a wonderful evening, darling.” Mother of F’s said in a sweet voice to the woman.

“Whatever t****y, get out of my way.” Miss Bullshit spat.

“I beg your pardon?” the bewildered queen questioned.

“I said move it, t****y.” Said unwelcome politician.

Surri watched as Jem, or Coco Rose, seemingly materialized next to the two.

“Do we have a problem here?” asked the towering queen.

“The only problem is that this, t****y, won’t get out of my way.”

The flower covered queen looked down at Miss Budwick with a look of mild disgust.

“Excuse me, but we don’t tolerate that word choice here. I’m gonna have to ask you to apologize to this queen, for it is absolutely impolite and intolerant to degrade someone who outranks you; especially when they have done nothing wrong.”

“Why would I listen to a t****y like you?”

Upon hearing this, Coco Rose snapped three fingers and the lights shut off. A few seconds later, a spot light shown down on Coco Rose, center stage.

“Don’t you disrespect me little lady.”

Neon lights started to slowly light up.

“Don’t you derogate, or deride.”

The stage lights spread to show a very creole set.

“You’re in my world now, not your world.”

The two spotlights showed two of the other Queens, Delphine Lulu and Mother of F’s.

“And I’ve got friends on the other side,” Coco Rose said with a wink towards Surri as the other queens murmured the line over.

Surri questioned what the wink meant for only a second while the Queen continued their performance. They wanted Surri to act now.

She walked behind the bar, only getting a glance from Rue Dolly, the Queen on bar duty, before he went back to cleaning glasses.

She reached under the cabinet and found what she was looking for.

Arsenic.

Surri mixed a simple drink and shook the toxin in. She then carried it over to where Miss Bullshit was sitting.

Then returned to the bar to watch the magic happen.

After Coco Roses set was complete, Delphine Lulu took center stage for his set. Coco Rose made their way through the crowd, towards the bar. They met Surri’s eyes with a inquisitive look. Surri nodded.

She then felt her phone buzz.

She pulled it from her pocket to see Anitri questioning her on her progress.

“Just watch her and if she leaves follow her,” Surri texted in response, “She won’t last long.”

As the sets went on Surri helped Rue Dolly clean glasses while the temporary bartender was mixing drinks. On a normal day, Emily would bartend but from what Surri had heard from Jem, Emily was currently visiting her mother and would be back in a few days.

Surri felt a buzz and checked her phone.

“She’s on the move.” The text from Anitri read.

She placed the glass in her hand on the counter and slide out from behind the bar. She followed her brothers tail that she saw slip through the door. When she found him he was watching the intolerant politician, lean against the side of the building with saliva running down her chin as she clutched her stomach. She was only visible in the darkness due to the neon pink sign shining on her. Anitri nudged her convulsing body into an ally where she fell onto her side and let out choked gurgling noises, jerking and drooling until those noises stopped and the color drained from her eyes.

Another one bites the dust.

Anitri turns to Surri, a look that was hard to read in his eyes, and nodded as if to reassure her that the retched lady was dead.

Then they both headed back inside, took a seat in the back row and acted like nothing happened and they had been watching the show all along.


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sonny-ray-of-goth - Sunflower grunge
Sunflower grunge

I love all things frog, mushroom, rainbow high… I have Ehlers danlos syndrome and use both a rollator and a cane. Enby that is bad at making friends but likes to have them. I adore many cartoons but haven’t seen even more.

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