#spoonie asks

[the-spoonie-life]

Hi! Im a new cane user. I wanted to ask how to bring a cane or wheelchair through TSA at the airport? I know how to store my cane in a plane, im just not sure how to get it through. Do I have to put it on the item belt? Or do I contonue walking through with it? Do I need to have an official diagnosis to even bring it?

I personally have never had to go through airport security with a cane/ wheelchair but I have been with my mum when she needed crutches. They had her walk through with the crutches and then used the wand to check her. You may just have to let the person know that you need it to be able to walk through.

Any one with experience with this leave your advice please.

[cripple-cryptid]

25 and 27

25) If you could have one “snap your fingers and ____ happens” ability, what would it be? (ex., snap your fingers and the dishes are clean)

Ooooh snap my fingers and instantly I had tea of my choice ready

27) What are you stressed about at the moment?

Okay so we don’t have a lot of money, and the whole house has been infected with covid. I’ve been sick for over a week, my boss is sick, we don’t have a lot of food, and I’m scared that we won’t have money for bills and rent. Like holidays aren’t even on my radar at the moment.

[chasing-asterion]

How would I go about dealing with a bad doctor's appointment?

This is the best template I’ve found so far: 

To [whom it may concern/front desk/lead doctor],

Regarding my most recent appointment with Dr. _____ on [date]. I think it’s in my best interests to have my level of care reassessed.

Following the appointment, after expressing concerns of [symptoms] in response to [previous appointments/tests, if applicable], that I was both dismissed and disbelieved. After presenting my symptoms, particularly in relation to my other conditions and severity, and how they impact on my quality of life, I feel the essential response was “[insert ableism/negligence.]” I left hurt and belittled, worse than when I arrived.

As my condition and [primary symptoms] continue, my quality of life is in decline, unmanaged by my current medications and medical support. I am unable to [get out of bed, feed myself, maintain personal hygiene, or any form of normal life, even by chronic illness standards. - Reassess as needed]

If Dr. ____ feels [they/he/she] is unable to help me further, I will need a transfer. Failing that, I need a copy of my patient file, including an itemised list of treatment and medication prescribed, as well as refused treatment and medication denied, to seek treatment elsewhere.

Regards,

[Name and date]

Hope it helps xx

[howtobeapersonwithfibro]

Spoonie asks

Just thought I’d come up with some questions we could put in each other’s ask boxes that are more relevant to us as spoonies! Feel free to reblog, and I’d love to see some asks pop up in my inbox :)

Favorite soup?

What color is your bedding?

What color are your walls?

Do you have any pets?

Favorite activities to pass time when in bed?

Favorite activities to do on a “good” day?

Toughest chore?

Something you miss being able to do?

Phone apps you use a lot?

Favorite easy thing to cook?

Favorite disabled character from book/movie/tv?

Favorite “makes-me-happy” snack?

Who understands you the most?

Hobbies you don’t spend much time on anymore?

Short naps or long naps?

Quote that brings you comfort/peace?

Advice to new spoonies?

Advice to ableds on interacting with spoonies?

What’s been hardest for you lately? (physically or emotionally)

Something you appreciate more since becoming ill

Go-to outfit?

Favorite place to relax other than your room?

Favorite easy self-care things that help you feel fresh?

What’s on your To Do list for a Really Feeling Good day?

If you could have one “snap your fingers and ____ happens” ability, what would it be? (ex., snap your fingers and the dishes are clean)

What helps you feel better when you’re having a bad pain day?

What are you stressed about at the moment?

Any mental exercises you use to relax or help fall asleep?

Do you typically watch TV/movies on a TV, a computer, or your phone?

Name 3 good/productive things you did today (even if they’re small!)

[tonguetiedvisitor]

Also I'm curious about 25... And 30. How's your ladder looking today? ^-^

30. Name 3 good/productive things you did today (even if they’re small!)

1: Did laundry

2: Gathered up all the garbage and bottles

3: Sorted some pictures on my phone

[itchyandglitchy]

What do you do for pain when its super hot out and your heating pad would make you feel worse?? I cant use ice.. It makes me cramp up

[persephoneandthepomegranates]

🛀🏻💻💊

🛀 - do baths help you?

They do! They help me recharge and relax especially if I’m anxious.

💻 - fave spoonie blogger?

@spooniewitches and @thewitchofthenorse are my two favorites!

💊 - what are your meds?

Effexor, Remeron, and Seraquil are all my current meds. I also take a daily multi vitamin and a fish oil capsule but they aren’t prescribed by a doctor.

Thanks for asking!

[the-spoonie-life]

I have a quick question. How did you know you had EDS? Like....I've been suspecting I might for a while now, but I also have a plethora of other chronic issues so getting a diagnosis would be....a bitch. Advice???

Sorry if this is a bit rambly.

I was diagnosed when I was about 5 years old so it’s kinda hard for me to answer this without just saying what was used to diagnose me back then.

I was super clumsy, like falling over multiple times a day and being sent home with a concerning amount of accident forms a week. I’d sprain my ankles a lot. My parents could feel my back click whenever they picked me up. I complained of a lot of pain in my hands when it came to things like writing. I’d wake up 15-20 times a night in pain. I had a leg length discrepancy which is caused by my pelvis twisting. I was very hyper mobile (fingers bending back beyond a 90 degree angle). Both of my parents are also hyper mobile one with confirmed EDS after my diagnosis.

Anyone who’s had an adult diagnosis will probably be able to provide some better advice about this but this whole combination of stuff was what helped me diagnosed so young.

Anyone able to offer any other advice?