#journey to diagnosis

[my-autism-adhd-blog]

Why self-diagnosed autistics are valid

medical diagnosis can be expensive

humans are the experts on their own minds

family may prevent assessment

diagnosis criteria is a poor checklist of stereotypes

diagnosis criteria ignores gender, race, sexuality, culture & more

medical diagnosis confirms autism, but doesn't create it

discrimination within the medical profession may prevent diagnosis.

Assessment waiting lists often long

medical trauma may make assessment unfeasible

Neurodiverse Journeys

[i-am-a--lionheart]

It's normal

Trigger: ED, IBD, Endometriosis, period, verbal abuse

I am 9 when my mother puts me on a diet.

The pre-teen fat scares her, I am 128 cm and weighing in at 29 kg. She feeds me nothing but meal-replacement shakes that are meant for teenagers.

She is a pharmacist.

I am 10 when I get my period.

My grandma is scared, but my mother says it's normal. I bleed a ton, I get nauseous. She says I don't need to go to see the gyn yet, my father agrees.

He is a doctor.

I am 13 when I pass out for the first time.

My confirmation dress is a little tight, my mother makes me fast of water and juice. I collapse on my way to dance school, on the road.

I call nobody.

I am 15 when the pain gets unbearable.

I cry a lot, I want to take pain medication. My mother denies me, thinking I will get addicted.

I steal them from her.

I am 17 when I develope an ED.

In school they bully me. I am 160 cm, weighing 55 kg. It's my weight, says my mother. I ask for carb-reduction pills, she says it's cheating.

I buy laxatives instead.

I am 18 when I begin to pass out and puke from the pain.

My periods are short, I bleed a ton, my stomach is upset all the time. We consult gyns all over our region. They say I am 'sensitive'.

They are all female.

I am 19 when I start to develop cysts.

I finally find a doctor that takes me seriously. His daughter suffers too. He sends me to the clinic. They find cysts and adhesions inside my belly.

I feel relieved.

I am 22 when I can't find help.

I am in Ireland on a mandatory exchange from my university. Health care for foreign students suck. They don't allow me to skip classes.

I write my exams, high on pills.

I am 24 when I begin to bleed from my guts.

Its in the mids of the pandemic, my mother is celebrating her birthday with her family, I am around. I cry, I am afraid, she says its nothing.

I begin to fever, she takes me to the hospital.

I am 24 when I call an ambulance.

I can't get up anymore because of the pain, I puke. In the hospital they shove me around, gynecologists, gastroenterologist, no one finds a thing until a pediatrician comes around for my roommate.

I have developed kidney-stones.

I am 25 when they put me on immunsuppressors.

I cry a lot, I talk to my mother, she is worried. My stepdad calls and is angry, tells me I shouldn't call for 'negative things' since my grandma is sick too.

She is 83 and has been an alcoholic for most of her life.

I am 25 when they find tumors in my uterus and guts.

They can't be removed they said, because it will destroy my fertilty. I don't plan on getting children with my fiancee. They say not to worry, the tumors are not cancer yet.

As if that would make things better.

I am 26 when I can't find psychotherapy.

I am not sick enough, they say, or too sick. I function too well, have been constantly working since I was 13. I try selfcare, but it barely works. But I am not alone.

My found family helps me heal.

I am 27 when I get my first full time job.

I haven't had a flare-up in 2 years, but I tell about my IBD, my Endo during the interview. My employer says my disabilities don't take from my abilities.

I think he is right.

[sebs-out-of-spoons]

💚♿️ Introduction Post ♿️💚

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi there, fellow spoonie! I’m Sebastian, and this is my blog for my diagnosis journey. Welcome! <3

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Things To Be Diagnosed

Physical

Hyperglycemia or Hypoglycemia (We aren’t sure yet)

Gastroparesis (Likely)

IBS (Irritable Bowel Syndrome) (Likely)

POTS (Postural Orthostatic Tachycardia Syndrome) (Was tested, came back with no indicators, the doctor was an asshat, so planning to test in other ways to make sure)

hEDS (Hypermobile Ehlers-Danlos Syndrome) (Was tested, came back without enough indicators, the doctor was an asshat and did a lot of it wrong, so planning to test again by someone else to make sure)

?MCAS (Mast Cell Activation Syndrome)? (Not too sure, but there seems to be some correlations, and will get it checked in the future just in case)

Mental

ASD (Autism Spectrum Disorder)

ADHD (Attention Deficit Hyperactive Disorder) (Combined Type)

C-PTSD (Complex Post-Traumatic Stress Disorder) or PTSD (Post-Traumatic Stress Disorder)

Pure O OCD (“Purely Obsessional” Obsessive-Compulsive Disorder)

SPD (Sensory Processing Disorder)

APD (Auditory Processing Disorder)

ARFID (Avoidant/Restrictive Food Intake Disorder)(Avoidant Type)

SAD (Social Anxiety Disorder) BDD (Body Dysmorphic Disorder)

Misophonia

Trichotillomania

Dermatillomania

SAD (Seasonal Affective Disorder)

Agoraphobia (“Mild”)

PDA (Pathological Demand Avoidance, or Persistent Drive for Autonomy)

Alexithymia

Hypersexuality

DPDR & Dissociative Amnesia

Overlapping

PMDD (Premenstrual Dysphoric Disorder)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Already Diagnosed

MDD (Major Depressive Disorder)

GAD (Generalized Anxiety Disorder)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

About This Blog

I’ll probably mainly be posting about the progress on my physical diagnoses. I will be posting about PT, my chronic pain, chronic dislocations and subluxations, chronic fatigue, pre-syncope and co., and everything to do with my physical symptoms and struggles.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

More Things

I’m going in for PT twice a week, and I’m doing home exercises.

I had an appointment with my eye doctor on 10/14/2024. Prescription changed, slightly worse.

I had an appointment with a cardiologist on 11/4/2024 to figure out if I have POTS and hEDS as well, and came back negative for all, but the doctor was a medical gaslighter, so we’re getting things re-tested by someone different.

I had an appointment with a gender clinic on 11/4/2024 to start the process of diagnosing and treating my neurodivergencies, and it went really well.

I went for bloodwork today (9/20/2024), and I was tested for diabetes and more things, but I do not have it. The tests showed that I have poor liver function, so we’re doing things to start helping with that. We’re hoping to test for the hyperglycemia or hypoglycemia in the future sometime.

I went for a gynecologist appointment on 11/15/2024 for suspected PMDD, and am now on menstrual-suppressing medication.

I had an appointment with the gastroenterologist on 11/26/2024, and now we’re going for testing later on to confirm celiac, to make sure my thyroid is healthy and okay, and then testing for both IBS and Gastroparesis.

I had an appointment with a Gender Clinic on December 2nd of 2024 to discuss testosterone for in the future, gender dysphoria, and had a binder fitting. I’m being referred to an endocrinologist for testing to see my hormone levels and etc., and we’ll hopefully be able to get an appointment in January, maybe February, but hopefully sooner than all that.

I also have an appointment with a Psychiatrist who specializes in ADHD and Autism, on December 4th of 2024.

I have an appointment with an endocrinologist on January 29th to test hormone levels and hopefully get on testosterone ASAP.

I suffer from chronic pain, chronic dislocations & subluxations, chronic stomach issues, hypermobility (about an 6/9 on the Beighton Scale, plus hypermobility outside the Beighton Scale), chronic fatigue, and more stuff.

I own some mobility aids (forearm crutches & cane) and am hoping to get more in the future (specifically wheelchair, I’m saving up for it, but might be able to get it this or next year), and I have compression socks to help with blood pooling. I also have joint support braces to help during flare ups with subluxations and dislocations.

I am also celiac, have a dairy allergy, have environmental allergies, like dust, mold, and pollen, have random allergies like bananas, peanuts, eggs, any sort of concentrated sugars or things with lots of sugar in them (natural or added), specific adhesives, amoxicillin, random hand soaps, random hand sanitizers, certain kinds of bleach, random kinds of metals, kiwi, some deodorants, and random acne face washes.

I struggle with my eating due to my undiagnosed ARFID, POTS, and possible Gastroparesis. So, beware, I am always incredibly mood swingy due to that.

Daily Pain Scale

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

About Me

I’m a Queer, Nonhuman, Neurodivergent, and Disabled Transman (He/They/It/Any Neos).

I’m 16-years-old, and will be turning 17-years-old this year (2024).

I am taken by my amazing boyfriends, @funkydunkycorbin (He/Him) and @imin-lovewithaboy (He/Him).

I have one sibling (Any Pronouns), who I won’t be tagging since he isn’t on here much.

I’m a reality shifter, and have shifted about 5 or 6 times (parallel realities).

I’m a beginner Dual Faith Polytheist. I am in contact w/ a lot of Gods, and have altars for a few. I do have religious trauma with Christianity/God/Jesus though, so if you’re heavy with that on your blog, please shoo shoo.

My Special Interests are: Wings Of Fire, Harry Potter (fuck the author, I’m mainly here for the dead gay wizards), Dragons, and currently my most active special interest is Neurodivergency & Disabilities.

My Current Hyperfixation is: Neurodivergency & Disabilities, specifically my own.

I’m queer in many ways: Trans (FTM), Genderqueer, Enby (and under the umbrella), Xenogender, AroAce (Onealterous, Panqueerplatonic, Oneexteramo, Pansensual, Panaesthetic, Panplatonic), Polyamorous, T4T-leaning, and Lesboy.

I’m nonhuman in many ways as well: Polytherian, Polykin, Otherfix, Otherhearted, Otherflicker/Fictionflicker, Transspecies (radqueer fuck off), Humanfluid, Pseudohuman, Physical Nonhuman, and Voidpunk.

I love drawing, creating things, reading, and writing. Mainly, my hyperfixations and special interests take over my life, so I don’t have the energy or time for anything else (and then sometimes, my possible chronic illnesses take over my hyperfixations and special interests, and I’m not even able to muster energy to do them).

Tone tags/indicators are incredibly helpful for me, PLEASE USE THEM!

If you have any questions about anything, please ask me and I will not be bothered.

I don’t have the energy to make a DNI list, but just know that I will block you loads if you do fall under my mental DNI list.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Userboxes:

(All credit to the original creators of the userboxes - I am hoping to individually credit them soon, I am just waiting for the energy to do so!)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[affectionatepanda]

So apparently I’ve been diagnosed with fibromyalgia and my doctor just didn’t mention it to me??? Alright.

[yrfemmehusband]

I'm of the opinion that you should absolutely not tell your doctors you have fibromyalgia if you are trying to figure out an unrelated issue. They will blame it on the fibro.

If it is caused by fibro, that's an answer you can come up with yourself after the appropriate tests are performed.

[dollyboned]

i love looking people in the eye until they look back

[toomuchdivergentformyneuro]

going to go to the doctor soon to start getting my PMDD diagnosis! (like in a few minutes gonna leave to go there)

(and also hopefully be pointed in the direction of diagnosticians who can diagnose my AuDHD and my other undiagnosed stuffs that are covered by our insurance, IF there even are any)

[rainyfestivalsweets]

10/15/24

I am still here. Been a tough week. Weight unknown. Rough period, been sick for a long time, hurt rib, tough to sleep. Never feel rested.

Work is weird. They just let go someone who had 24 years of experience in a really hard to learn computer system. She was the one who did almost all of our extremely high dollar claims. The knowledge we lost due to the lack of documentation for this stupid system is unknown. I surmise she was let go (from the context) because she was working off the clock.

Did they stop to think or ask why she felt like she had to work off the clock? Did they stop to think how our team would be affected?

Idk, but they canned her anyway.

Anyone could be next.

I am heartbroken for her, and scared myself because I am generally a loud mouth fuck up. I have no where near the level of knowledge that she had.

If they weren't paying for school I would try to shamble somewhere else that has a better culture.

Or better yet, just care for mom until she passes. Play games. Read. Quality time and not worry about the future.

I hate that I struggle with basic tech stuff. I am having problems getting into one of the classroom systems for school. They keep sending authentication to my work email, which i cannot be on if I am not working and I cannot be working on school when I am working. Catch 22.

Add new terror to my dieting experience.

Overeating, although a conditioned response, is still my go to. I weighed over 300 pounds, it was my go to for a very long time. I am trying to overcome that BS but it is a struggle.

But... for today, I am going to do what I can. Stand at my desk. Hopefully get some good steps in and go to jiu jitsu class.

I had a delightful salad for lunch and just whipped up an apple cider yogurt dip thing that I am planning to use with apple cinnamon rice cake bites. Just plain nf Greek yogurt & sf apple cider mix.

Last night's dinner was chicken & asparagus risotto, which had rice in it. Idk that i knew that when I bought it but I ate it.

I worked out to beat off the stress from the school problem. (And to try to stay "in habit" because I have a hard time with habits. Prolly she to undiagnosed ADHD. )

[matchalovertrait]

Dulce received a more official diagnosis. The psychiatrist says she has dyslexia. Fortunately, Dulce has been doing better in school over the past few years. She is slowly being phased out of special education but will still seek speech therapy and tutoring at school.

[yellow-dress-basil]

Having trouble falling asleep tonight. The AuDHD plus the chronic pain.

I’m just thinking about why I’m bothering to get my Special Ed degree if I know I’ll never be able to hold down a job like that. Let alone finish school. I can’t do it. I’m so anxious in any job because I have to do social things. And because I have to do physical things that hurt me.

And I feel weak for even having those extra needs and it just feels like shit.

[jackalope78]

Yesterday was the first day since my diagnosis in April where it felt like the fact that I have MS was allowed to sink into the everyday miasma of life and wasn’t the most prominent thought of my day at every second. Twice yesterday I had moments of… not surprise exactly, that’s the wrong word but it’s the closest I can think of, where I kind of went, oh yes I have MS. This isn’t to say there I never had times the past six months where something else was the main occupier of my thoughts, but even when there were these other stressors, there it was pulsing in the back of my thoughts like some unwanted demon. It was always things like, ‘My car is having troubles (and I have MS)’ and never just the car troubles alone. But yesterday, there were a couple of times that it wasn’t there, as though it faded enough into the background of life that it could be part of the scenery instead of a glaring monstrosity you cannot look away from. It feels like the start of healing.

[my-autism-adhd-blog]

The Road to Diagnosis

The Autistic Teacher

[jessmalia]

I'm super visual when reading books and usually see the whole thing playing like a movie in my head, and when I first read the PJO books I had a very clear mental picture of Percy, but this time around it's much more blurry... cause Percy's kind of just faded into me in my mind.

[martianbugsbunny]

Not to be a huge tumblrina but the office somehow managed to be super overbooked (?) and the only thing keeping me sane and placid as I wait is scrolling through cherik pics on instagram

[affectionatepanda]

Sometimes I think “wow I really miss being able to do XYZ thing” and then I start thinking about everything else I can’t do/have to be careful if I do now. I’ve obviously had these conditions for years longer than I even knew they were a thing that existed but they’ve all gotten so much worse as I’ve come into my early twenties. I already didn’t really lead a “normal” life beforehand but now that feels completely out of reach. I get so mad sometimes, if I think about it for too long. It feels like I can’t have a fun, carefree experience at any point in my life. Usually it doesn’t bother me because I’m not even naturally a carefree person but not even really having the option… It just makes me wanna have a fit. But what does that help? So I just shove it down and try to move on and enjoy the things I can still do.

[yrfemmehusband]

I have a doctor's appointment tomorrow and I'm thinking a lot about my own role in my medical treatment and how I've definitely aided in my own prolonged diagnosis. Yes, lots of doctors gaslight, and lots of doctors are starkly rude and unhelpful. But it's hard to deny I've also played a role in not getting what I need from appointments and Drs.

My severe medical trauma makes it really difficult to explain what exactly I want to say. It makes it hard to say anything. And while that's hard to overcome when you keep getting traumatized, it's something I really need to do. Not being able to fully articulate to my doctors what's going on with me has severely negatively impacted my care.

It is also up to the patient to redirect their care if it isn't going in the direction they feel it needs to go. I have known this whole time I need to go up a neurologist but on some level I have allowed myself to be yanked from specialist to specialist to not find anything wrong. Investigating issues that might be a problem but don't fit all my symptoms, especially the most important ones. I should have emphasized which symptoms were affecting me most and I should have displayed more of my knowledge about where I think their origin could be.

All of this was hard to do for multiple reasons. These things have been more or less out of my control, it was hard to recognize what I needed to do. Part of the issue is fear of doctors and the medical system as a whole. Listing off all of my symptoms is difficult because they are so widespread. Ive had so many gaslight me that it's easier to pick a few most impactful symptoms and leave out the rest.

Another reason is because of my illness itself. Doing anything has been extremely difficult for two years now. It's hard to make art, to post, to organize my symptoms let alone keep track of them. Ive wanted to make a folder of my symptoms, diagnoses, a timeline and pictures. I want to, just feel like it's not within my grasp to do it at all. It's difficult to pick up new habits or learn new things at home and at work. Everything is difficult for me. Add medical trauma on top of this and I was nearly mute in so many of my doctors appointments. Even now it's simply hard to articulate everything and remember everything I want to say.

Honestly I don't blame myself, this isn't my fault. The medical system and doctors should put in more effort and safeguards for people who have issues articulating their issues, and a patient advocate did not help me either, it wasn't even his fault to be honest.

This time I'm setting aside time to write everything down. I already have a chart and timeline of my symptoms and diagnoses I made with my therapist and now I'm going to draft a script for my appointment tomorrow. Pls wish me luck and if anyone has any advice that is welcomed thanks if u read my rant lol