thespoonienet - Tumblr blog

[thespoonienet]

Update: it’s been 11 days. Accounts that have been banned more recently than I was are already restored. I know for a FACT over 100 reports have been sent in on my behalf. Apparently, that’s not enough.

Please, please share and send a report in for me.

my tiktok account was permanently banned in what is likely a move of disability suppression

My account @valeriesvoice was banned from TikTok two nights ago citing “multiple community guidelines violations” when I have had none. This is a continual pattern with TikTok and disabled creators, and I’m heartbroken that I’ve lost the platform and community of 61,000+ folks where I felt I could talk candidly about my illnesses and experiences. 

If you wouldn’t mind taking a minute to email TikTok using this template to help me get my account back, I would really appreciate it!!

You can also fill out a form here: https://www.tiktok.com/legal/report/feedback or report in the app.

Thank you thank you, and please spread to anyone who would be willing to help! 

[thespoonienet]

my tiktok account was permanently banned in what is likely a move of disability suppression

My account @valeriesvoice was banned from TikTok two nights ago citing “multiple community guidelines violations” when I have had none. This is a continual pattern with TikTok and disabled creators, and I’m heartbroken that I’ve lost the platform and community of 61,000+ folks where I felt I could talk candidly about my illnesses and experiences. 

If you wouldn’t mind taking a minute to email TikTok using this template to help me get my account back, I would really appreciate it!!

You can also fill out a form here: https://www.tiktok.com/legal/report/feedback or report in the app.

Thank you thank you, and please spread to anyone who would be willing to help! 

[thespoonienet]

my tiktok account was permanently banned in what is likely a move of disability suppression

My account @valeriesvoice was banned from TikTok two nights ago citing “multiple community guidelines violations” when I have had none. This is a continual pattern with TikTok and disabled creators, and I’m heartbroken that I’ve lost the platform and community of 61,000+ folks where I felt I could talk candidly about my illnesses and experiences. 

If you wouldn't mind taking a minute to email TikTok using this template to help me get my account back, I would really appreciate it!!

You can also fill out a form here: https://www.tiktok.com/legal/report/feedback or report in the app.

Thank you thank you, and please spread to anyone who would be willing to help! 

[thespoonienet]

i need some advice and idk where to go! basically i found of a spoonie on instagram (an internet friend) is really homophobic and it’s really hurt me😭 it really upsets me that everyone thinks she’s sweet and nice when she’s not. i just wish i new how to change her mind or i wish everyone knew, but i don’t want her to get hate... idk???

Oh gosh, I’m so sorry love. That’s awful. I hope you know that you are ALWAYS supported here! We love all of our spoonies of any sexuality. Have you tried talking to her about it? I know it can be hard to change opinions, but sometimes education is really what is needed to open people’s eyes. 

I’m here for you!

[thespoonienet]

Hi! I’m about to start the autoimmune protocol diet and I was hoping to find some spoonies to talk to about it

Do we have any spoonies that can help Bri out?

Sending love and spoons your way @cynicalcripplepunk!

[thespoonienet]

also anyone with narcolepsy have tips on staying awake?

Do we have any spoonies that can help with this?

Sending love and spoons your way anon! 

[thespoonienet]

at people who have cataplexy, can you get it only in certain areas? i think i may have had a cataplexy attack but only my leg muscles stoppped (i fell but i could keep my torso and head up) and sometimes i’ll have muscle slackening where only my head/neck muscles fall (in this case my head will drop but i can still stand)

Any spoonies here who can help with this?? 

Sending love and spoons your way, @wlwology!

[thespoonienet]

So I had a co-worker ask what my illnesses are cause he overheard me talking to my friend about being sick, and I, of course, prepared myself for the obligatory “I’m sorry.” I did get the usual, “oh my dad has migraines,,,” BUT then he followed that with “and I see how much he suffers during an episode, and I wouldn’t wish it on my worst enemy. If you ever need anything, if you are having a bad day, please let me know if I can help. I help take care of my dad when he’s sick, so I know a little bit about them and will even go to the managers with you if you need an extra break or to leave early.”

I’ve never had anyone who wasn’t a spoonie really understand what I’m going through, and this post doesn’t do him justice. He knows he doesn’t know everything, doesn’t try to make me feel bad about being sick, just genuinely wants to help me feel as good as I can. And that is all I have ever asked anyone to do.

[thespoonienet]

I have CRPS in my left foot and I struggle to do anything and everything. If anyone has a good treatment please let me know

Does anyone have advice for our spoonie friend?

[thespoonienet]

hey so my name is jake!! i’m a blasian trans gay dude and a while back i was diagnosed with hashimoto’s thyroiditis (an autoimmune disease that makes my body attack my thyroid for presumably no reason). so on december 15th, i had the surgery to get rid of my left thyroid lobe. during surgery, they found that my left lobe had 3-5 cancerous tumors and they removed my whole thyroid instead of just half. (the pics above are all the proof i have atm due to the fact that we haven’t gotten the paperwork back from the hospital)

so, long story short i still have cancer in my system, which is why i need to go through radiation therapy for it. due to the fact that my medicine (levothyroxine) can promote cancerous cells to spread & duplicate faster whencombined with the radiation therapy (don’t ask me how i don’t know) my surgeon told me that i should stay off of my medication so that my cancer doesn’t spread to my lymph nodes… and the lymph node cancer 5-year survival rate is only about 25%… which is really fucking scary

but the thing is: i can only survive 21 days without a thyroid and the horomones the thyroid gives, and my surgery happened 5 days ago.

i really cannot afford therapy, we can barely afford food rn. the surgery & numerous doctors visits that got me here took $13k+ from us, and radiation therapy will take at least another thousand from us and we really can’t do that. so unless i raise at least another 2k in the next few weeks, i’ll either die or be forced to deal with more cancer in my system which will inevitably kill me.

tl;dr: i have 16 days to raise $2k+ for post-cancer radiation therapy or i might actually die.

paypal: https://www.paypal.me/T4ROT

cashapp: $jibbletz

thank you for reading & stay safe everybody!

[thespoonienet]

Hello, I wanted to ask if you or any of your followers have experience with ivig treatment. I have POTS and a doctor suggested it to me, but I'm unsure if the side effects are worth it.

I personally haven’t - have any of yall?

[thespoonienet]

I hope this is ok if I post this here but if anyone has RA can you maybe help me answer a few questions? I was in the hospital last summer for 2 weeks with ridiculous tachycardia and some chest pain/ shortness of breath. They basically tested me for everything and then eventually sent me home with a diagnosis of pericarditis (inflammation around the lining of my heart) which I had a diagnosis of a month previous when I had a bad cold and a resting bpm of like 168. 1/2

So they tested me for lupus and it came back negative and I think they also tested me for RA but I’m not sure. My CRP was really super high too (In the 20s) and when I left it was lower. But now I’m having extreme bilateral joint pain, swelling/redness/heat in my joints, bad stiffness and this is all in my fingers, wrists, knees, hips ankles and elbows. 2/3 sorry!

My doctor put me on indomethicin (25g 3x/day) and she said if that doesn’t help in about 2 weeks she’s gonna send me for labs? The only other thing I can think of is that it’s the cold Canadian weather (it was really sudden this year) and so that’s why she put me on the anti-inflammatory to see if it helped. But is it possible to have developed RA since the summer? If anyone could share their diagnosis story with me I’d be really thankful!! 3/3

Can anyone with RA help our spoonie friend out?

[thespoonienet]

I'm a Spoonie going through a break up, and all the stress and anxiety about it is making my health conditions flare up. My ex-partner wants to not talk and have space, whereas I want close and to end things on a nice note. Wanting the opposite things makes it so hard and he has always only done things his way! Do you have any tips for managing health problems during stress, or for dealing with a breakup? Sorry for the long post, and thank you for your blog 💛

I’ve never had a breakup before, can anyone help our friend out?

[thespoonienet]

Hi :0) So I’m suffering from near constant pain and exhaustion, with no real diagnosis. Any tips on how to keep my spirits up?

:( I’m so sorry love, I know that’s super difficult! Community and music are two things that really helped me. I don’t have a ton of support offline, but I found lots of support online here and also in facebook support groups.

Does anyone else have any other suggestions?

[thespoonienet]

Hi! New to tumblr and wondering how many other spoonie nurses I can find. I live with SLE, fibromyalgia, and chronic migraines. I would love to connect with others that know the struggle!

Are there any other spoonie nurses out there?

[thespoonienet]

Hi does anyone have any experience with cbd from hemp? (Hemp being industrial hemp and legal in all 50 states not the medical marijuana stuff) I suffer from neuropathy and am running out of options...

Anyone?

[thespoonienet]

I have costochondritis from time to time. I usually put a heating pad on it when it's really bad. The best thing to do is to avoid lifting heavy things, because I find that makes it last longer. Otherwise, it should go away on its own within a few weeks to a couple months.

@cassohwary this should help!