soup-spoonie
soup-spoonie
2K posts
(main is @jessicanjpa) Living with chronic illness and chronic/episodic pain: seronegative rheumatoid arthritis, hypermobility (Marfanoid but no danger), depression, Hashimoto's disease with Hurthle cell adenoma (partial thyroidectomy Sept 2022), osteoarthritis, sleep apnea, scoliosis w/spondylosis, severe pectus excavatum, migraines. Every single person in my family is living with chronic illness and/or chronic pain. The sandwich years are kicking my butt right now.
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soup-spoonie · 20 hours ago
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For someone who loves to sleep, you'd think I'd be able to
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soup-spoonie · 20 hours ago
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Noooo don't say it out loud! Your body will come up with a secret new limit for you to reach 😩
I'm excited to announce that I have just about reached my limit.
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soup-spoonie · 1 day ago
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I was recently diagnosed with hashimotos, what is a spoonie? I see the term everywhere
Sorry you have to join the club, but welcome! A spoonie is anyone who can relate to The Spoon Theory, which was written about the day in the life with someone with a chronic illness. <3
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soup-spoonie · 5 days ago
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how are you feeling right now? please reply in gif form
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soup-spoonie · 5 days ago
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soup-spoonie · 5 days ago
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Cool idea! (you had me at "ooh math.")
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With symbol | without
(Too tired for image description, sorry)
Here’s my take on a Hypermobile Ehlers-Danlos Syndrome (hEDS) pride flag.
The dark blue and off-white stripes are meant to evoke zebra stripes, a popular symbol for EDS. The center stripes are teal and purple, two colors associated with the condition, and the blue stripe between them is for cohesion. The obtuse angle symbol represents joints that extend beyond a normal range (hypermobility).
Anyone with hEDS can use this flag for whatever they’d like.
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soup-spoonie · 5 days ago
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sometimes when chronically ill/disabled/neurodivergent people say “I can’t do this thing” they really mean “I can technically do this thing I guess, but not without pretty significant repercussions” and I really need more fully-abled people to understand the validity of that
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soup-spoonie · 5 days ago
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Why do people say "How are you?" ...as they walk past you
PERSON: How ya doing?
ME: I'm beset with calamities.
PERSON: Great! See ya later.
ME: *whispers* but calamities
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soup-spoonie · 6 days ago
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Just wanted to give a quick rec for WeatherX in case you guys haven't heard of it. If you have barometric pressure migraines or sinus headaches, this is for you!
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Basically it's a set of specially made earplugs that keep the pressure more equalized for you. And the accompanying phone app sends you an alert when a significant pressure change is on its way, so you can put in the earplugs before it happens.
When I was a kid, I had no idea I would grow up to be a barometer
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soup-spoonie · 6 days ago
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Just wanted to add: if you sleep alone and you've been unusually tired lately, it's possible you have sleep apnea and no one has been there to notice how weird your breathing has gotten. You can use the SnoreLab app to record your sleep sounds. Then in the morning you can easily see spikes on the digital record, then click on any given spot to listen.
I expected my cpap machine to make a dramatic difference right away but after waking up from my first night on the machine I think the experience can be described as I woke up and thought “well I don’t think I feel dramatically different but it also definitely feels like something in there has been unclogged”
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soup-spoonie · 6 days ago
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Update at 3 am: intractable migraine day 23. After an unusually mild day on Tuesday and hopes this was finally starting to fade, yesterday morning was awful. Finally got into my neurologist's infusion center and got the IV cocktail again, including another big dose of solumedrol.
Please, please let today show improvement. The effect of the solumedrol should still be ramping up through the next several hours. Brain MRI was normal and so was eye exam. The ophthalmologist didn't see any obvious optic neuritis but the symptoms definitely hint at that. IV solumedrol would be the treatment for that anyway, so I don't really care either way honestly.
I just want my life back.
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soup-spoonie · 6 days ago
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I was searching for "National Migraine Awareness month" and found this gold mine instead. 😂
Monthly Holidays: June
Monthly Beer Holidays
Canned Beer Month
Idaho Wine and Cider Month
Monthly Food Holidays
Corn Month
Cucumber Month
Dairy Alternatives Month
Dairy Month
Fruit & Vegetable Month
Iced Tea Month
Lemon Month
Mango Month
National Candy Month
National Country Cooking Month
National Papaya Month
National Rosé Month
National Seafood Month
National Soul Food Month
National Steakhouse Month
Ohio Wine Month
Okra Month
Pluot & Aprium Month
Sorghum Month
Turkey Lover's Month
Monthly Health Holidays
Alzheimer's & Brain Awareness Month
Antiphospholipid Antibody Syndrome Awareness Month
Cancer From the Sun Month
Cataract Awareness Month
Child Vision Awareness Month
Children's Awareness Month
Fight the Filthy Fly Month
Hernia Awareness Month
Men’s Health Month
Myasthenia Gravis Awareness Month
National Aphasia Awareness Month
National Congenital Cytomegalovirus Awareness Month
National Migraine and Headache Awareness Month
National Pest Control Month
National PTSD Awareness Month
National Safety Month
National Scleroderma Awareness Month
Potty Training Awareness Month
Professional Wellness Month
Vision Research Month
World Infertility Month
Monthly Heritage Holidays
African-American Music Appreciation Month
Black Music Month
Family Month
Gay & Lesbian Pride Month
International Men's Month
LGBTQIA Pride Month
National Caribbean-American Heritage Month
National Fresh Fruit and Vegetable Month
National Frozen Yogurt Month
National Portuguese Heritage Month
Pride Month
Monthly Nature Holidays
Adopt-A-Cat Month
American Rivers Month
Aquarium Month
Georgia Blueberry Month
Great Outdoors Month
National Adopt a Cat Month
National Camping Month
National Ocean Month
National Pet Preparedness Month
National Pollinators Month
National Rivers Month
National Rose Month
Perennial Gardening Month
Social Petworking Month
Zoo and Aquarium Month
Other Monthly Holidays
Audio Book Month
Celibacy Awareness Month
Disaster Preparedness Month
Fireworks Safety Month
Hetero Awesomeness Month (Idaho)
International Surf Music Month
Lane Courtesy Month
Let's Get Married Month
Light the Night for Sight Months
National Accordion Awareness Month
National Bathroom Reading Month
National Burglary Prevention Month
National DJ Month
National Give a Bunch of Balloons Month
National GLBT Book Month
National Homeownership Month
National Microchipping Month
National Smile Month
National Patriots Month
National Zoo and Aquarium Month
Own Your Share of America Month
Prepare Tomorrow's Parents Month (5.11 - 6.15, 2025) [From Mother's Day to Father's Day]
Rainbow Book Month
Rebuild Your Life Month
Recycling Month
Skyscraper Month
Sports America Kids Month
Summer Month
Women's Golf Month
Monthly Business Holidays
Effective Communications Month
Entrepreneurs "Do It Yourself" Marketing Month
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soup-spoonie · 8 days ago
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Oh past self, my sweet summer child. The migraine is still going, day 19 now. That solumedrol infusion (above) did give me total relief... for 12 hours. And everything has been a bit milder since then, but still very disabling. Still have to close my eyes to even turn my head or walk around the corner into the kitchen.
Brain MRI and eye exam both normal👍and all the meds my neuro has me on certainly keep things manageable enough to stay fed and hydrated.
But it still will not end. Still looking for any advice or even the smallest tips on how to help an interactable migraine actually end. Or is it truly just a matter of letting it time out when it's ready? I feel like I'm doing everything I can and it's still not enough.
Trying Trudhesa when it comes in the mail this week, and I'm using the vagus nerve stimulator now. Otherwise still on the regimen I shared above.
Any advice is welcome, thank you 🤕
Fellow migraineurs!🤕
What works for you when you're stuck in an intractable migraine a.k.a. status migrainosis? (migraine that lasts more than 3 days)
I've had this one for seven days and no sign it wants to end, and I am. over it. I have good meds/protocols that all help somewhat, but my usual rescue med is failing to put a stop to it. It just keeps ramping back up.
I'm stable and can eat/drink enough--my preventative med is definitely keeping the worst pain and nausea away--but still. Help. Advice wanted. Please. Extra pissed bc this whole thing was triggered by my Botox injections last week. Those lovely 31 needles that bore into your skull muscles to help migraines. I'll almost certainly do it again in 12 weeks (minus the new site we tried this time. Big mistake I guess).
Anyway, med details under the cut for anyone who wants it:
My maintenance protocol is Qilipta (my beloved) and 400mg magnesium glycinate at night. I also take Cymbalta and amitryptiline which both help a little. Ubrelvy is my rescue med, usually taken with advil or excedrin.
For this current migraine I'm doing the regular rescue with lots of heat and ice (cold cap), black sock over my eyes or hat and sunglasses to move around the house. My primary doc gave me a Nurtec sample and a Zavspret sample today (cannot be taken on the same day). She also prescribed Toradol and Zofran to use only when needed. AND my neuro has me on a dexamethasone taper pack, which I'm 2/3 done with almost no effect. Also doing some massage and vagus nerve stim exercises, though our actual vagus nerve stimulator isn't active right now. Because $$$$.
I just happen to have my Remicade infusion tomorrow (my RA biologic) and they will probably add a shot of solumedrol if I ask. So I might do that if things aren't looking up tomorrow. But I am NOT looking forward to double the steroid side effects that will hit tomorrow night if I do. 😩
So looking for more advice--when you get stuck in this mode, what helps your brain snap out of it?
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soup-spoonie · 10 days ago
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Hey OP how does it feel to be a freaking genius?? You just won the pillbox competition I didn't even know we were having
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Ngl I giggled from doing this ig it’s effective for mental health. Plus made me remember to take me setraline. Wellbutrin on the other hand…it depends when I eat, that shit has been beating my ass in terms of weight loss and nausea. Thankfully I have my weighted blanket by my side for it all.
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soup-spoonie · 10 days ago
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I'm sure they are 😁
#Q
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soup-spoonie · 10 days ago
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told my therapist my antidepressant/adhd meds have been working great and I feel truly productive for the first time ever. they told me to make sure I don’t fall into the belief that I don’t need them anymore and quit taking them.
like. buddy. pal. I take this pill consistently and become the closest thing the human mind could comprehend as a god. you’ll have to pry this Wellbutrin from my otherworldly immortal hands. this is my ambrosia and I consume it with gusto.
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soup-spoonie · 10 days ago
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the worst part about taking boatloads of Wellbutrin and then losing a lot of weight is that actually, doctors have been lying and gaslighting me my entire life. losing weight did not at all help with my joint pain. it didn't make walking easier. it did nothing to help with my hEDS.
since ive lost a lot of weight, walking is harder. sitting for long periods of time hurts more. im clumsier and get injured more easily, and my bruises last for even longer. im tired all the time. i black out way more often. i get nauseous eating now and do so inconsistently. i need to use my cane more often, and my palm and wrist hurts more now after. i don't feel any better at all, actually! i'm just skinny and suffering now.
never believe some shitty doctor who tells you it's all your weight. i felt better fat than i do now, and humans who live healthy lives where resources aren't restricted generally biologically ARE supposed to carry extra weight. i'm so sick of being sold this idea that we're all just slowly killing ourselves doing the very thing we have to do to live: fuck your doctor and fat liberation is and always has been directly tied to the progression of disability rights.
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