Abby🫀

About me (general)

- i’m abby (or raven)

- i am 20 and use any pronouns

- i’m queer

- i sew and play bass

- i like neuroscience, goth and gothic things, cats, makeup, stuffed animals, halloween and cryptids

About me (disability related)

- i have psychiatric, neurodevelpmental, neurological, physical and sensory disabilities

- most of my body and body systems are effected by my disabilities

- the thing that effects me the most is a neurological disorder that is known to be neurological but we do not know exactly what it is yet, me and my doctors think it is the cause of a lot of my other disabilities

- part time mobility aid user | cane and rental wheelchairs

- i have a sacral nerve stimulator | i have an nj tube and am hydrated somewhat through my tube but also through iv (peripheral ivs at an infusion center)

About my account

- disability account

- may post about my disabilities, educational post, awareness, pictures and other things

- not all my post are like this (i am trying to edit old ones) but i started tagging my post with what type of post (eg. Educational post, update post) and what type of disability it is related to (eg. Neurological disability, urological disability) i do often have other things about the type of disability in the tags too

Account interactions

- prejudice people and abusers go away or i’ll just block you

- don’t hit on me i’ll also block over this

- asking invasive questions or not respecting that i don’t want to answer a question also gets you blocked

Other accounts

I am going to be seeing a neuromuscular specialist in august possibly sooner. I am hoping they’ll figure out whats wrong and treat it

I tested positive for the hematomochrosis gene mutation and am seeing hematology next week. Going to bring up a couple other things that appointment too

I had an off pulmonary function test and see pulmonology in August possibly sooner

My feeding tube is back but I’m having issues with the new one now

I see a genetic counselor in june and have multiple things to bring up there

The iv fluids I’m getting are helping, they help my ist too (along with beta blockers) and my heart rate leaving there sometimes is less than my sleeping heart rate before treatment

Scheduled an appointment with a new cardiologist for a second opinion on my heart

I have pain that concerns me about my kidneys so i need to message my doctor

I had a motility appointment a few days ago and it went well. Testing me for exocrine pancreatic insufficiency and malabsorption, got some med changes, got a dietitian referral, and updated on the gastric stimulation situation (still waiting on insurance)

It’s not as uncomfortable as i imagined but mine is very long for some reason

ID: a mirror selfie of a pale person with brown hair in a spider web pattern sweater in a bathroom with blue walls, her ni tube is tucked back behind her ear and still falls to the top of her waist. End ID

Plain text: i got my sacral nerve stimulator today. End plain text

The full implant is in after doing a trial that was helpful

Pain isn’t too bad it’s better than when i got my gallbladder out

I don’t see much about conditions effecting the urinary tract so i thought i’d make my own.

The basics: neurogenic bladder (aka; neurogenic lower urinary tract dysfunction) is a broad term for bladder and lower urinary tract dysfunction caused by neurological disorders

Types: there is 3 types of neurogenic bladder; overactive, under active, and mixed type

Overactive: a hyper active bladder, it will have involuntary contractions

Under active: a bladder that is not active enough and doesn’t contract enough and when needed

Mixed type: a mix of symptoms and features of both under active and over active bladder

Symptoms (not a full list)

Overactive bladder

Urinary hesitancy (difficulty urinating)

Urinary incontinence

Frequency

Urgency

Under-active bladder

Urinary retention

Urinary hesitancy

Overflow incontinence

Not being able to tell you have a full bladder

Causes: neurological disorders (a few examples; spina bifidia, stroke, CNS tumors, Parkinson’s, and much more)

Treatment (not a full list, it also depends on the symptoms and underlying cause)

Urine schedule

Medicine

Sacral nerve stimulation

Catheters

Certain surgeries

Stigma: theres a lot of stigma around urinary disorders and disabilities. Many with them are scared to talk about them. It’s often seen as “gross” and “unsanitary”. Those of us with urinary issues often get shut down in conversations even in disability spaces because people think our disorders and symptoms are taboo and shouldn’t be talked about. All of this not only makes it hard to live with by constantly hearing part of your daily life called gross and unsanitary, but it makes people afraid to talk about it, including to doctors, when they really need to.

Sources

https://www.urologyhealth.org/urology-a-z/n/neurogenic-bladder

I have both hashimotos and central hypothyroidism but this post is going to be about central hypothyroidism since i don’t see it talked about often

Central hypothyroidism is a rare disease where the pituitary gland or hypothalamus is not working properly leading to hypothyroidism

The hypothalamus and pituitary gland are parts of the endocrine system located in the brain that help control hormones and other endocrine organs

They both make and release multiple hormones that signal other endocrine glands to work. For thyroid the pituitary gland will send out thyroid stimulating hormone (tsh) which tells the thyroid to make thyroid hormones like t4 and t3.

In central hypothyroidism one or both of the pituitary gland or hypothalamus is not working to send tsh leading to the thyroid making t4 and t3 and lower levels of this in the body

Since there is less tsh being sent and less thyroid hormones being made people with central hypothyroidism present with low tsh and thyroid hormones like t3 or t4 which is different than things like hashimotos, which usually has low t3 or t4 but high tsh, since the pituitary is trying to get the thyroid to create more hormones

Central hypothyroidism is treated with thyroid hormone replacement and monitoring levels like t3, t4, and tsh

The symptoms of central hypothyroidism can be found in other forms of hypothyroidism and include (not a full list)

Fatigue

Weight gain

Cold intolerance

Dry skin

Changes in periods

Depression

There’s multiple things that can cause central hypothyroidism but some include pituitary tumors , genetic diseases, traumatic brain injury and more

Sources and more information

My neurology appointment got canceled so now i have one in april but am on the waitlist

I am doing a sacral nerve stimulator trial and will be doing the full thing if it helps

I’m getting my ASV machine next week (had to be pushed back cause of snow)

My ct angiogram was also pushed back cause i was sick

I’m in occupational therapy and neck pt

I’m starting vestibular therapy i have my first appointment with them tomorrow

I’m getting an asv machine soon

I also start pain management soon

I have an appointment with a new neurologist and i am hoping she can help me find out whats wrong and hopefully treat it

I have a TMS consult at the end of the month

I might be getting a sacral nerve stimulator

I made some covers for my cane handle

They look a little weird when they’re not in use

ID: the top of a black cane leaned against a white door. It has a purple and silver cover on the handle and has a grey floral wrist strap and spike decoration. End ID

ID: the top of a black cane with a cover on the handle made of a black and white cat fabric. It is in front of a grey curtain. End ID