I’m here for young chronically ill people who had to go through middle school & high school with pain and fatigue while parents and teachers remained willfully ignorant to our conditions 

I’m here for chronically ill people who were told they were too young to have something serious and that their symptoms couldn’t be that bad

I’m here for anyone with Lupus, Fibro, CFS, and more who made it out of a hellish school system with mental scars because people don’t understand what chronic illness is

“But you haven’t officially been diagnosed with Celiac disease, so, you should be fine eating gluten.”

Okay, gather ‘round, kids.
First of all, regardless of what the media tells you, SOME PEOPLE EVEN WITHOUT CELIAC CANNOT EAT GLUTEN.
You know how some people have reactions to things like peanuts, or strawberries, or apples?
Sensitivities, intolerances, and allergies can happen with LITERALLY ANYTHING.

Secondly, and this isn’t the case for everyone, IT WAS MY PERSONAL CHOICE NOT TO BE TESTED FOR CELIAC.
Here’s why.
There are two main ways to test for Celiac Disease.
The first, and most accurate, is a biopsy of the small intestine.
My anxiety goes through the roof even just thinking about it, and I probably couldn’t bring myself to do a thing like this unless my life literally depended on it (like if they thought I had cancer, or something. And even then, somebody better fucking give me something to calm my ass down, which I would also be anxious over, because the thought of having an allergic reaction to meds also scares the shit out of me.)
The second is a specific blood test.
Which would be fine.
Seriously, poke me with as many needles as you want, I’m used to it.
The catch, aside from the fact that it’s not super accurate, is that you have to have gluten in your system for the test to work.
It would have been lovely if my doctor had suggested doing this test BEFORE he suggested removing gluten from my diet… but he didn’t.
By the time I’d been gluten-free for two months, so many of my complaints were SO MUCH BETTER that I didn’t want to put myself through the agony of introducing it into my diet again, just for clarification of how serious my reaction to gluten is.
I know that it affects me negatively.
Very negatively.
So it doesn’t really matter to me whether it’s because of Celiac, or if it’s just an intolerance.
Either way, I wouldn’t start eating it again, so WHAT DIFFERENCE DOES IT MAKE?!
I haven’t purposely consumed gluten in 2.5 years, now. It’s happened on accident a few times, and it was HELL.

Last but not least… why the FUCK is everyone so obsessed with what other people are or are not eating?
Why is it that people feel the need to try to persuade me to eat gluten foods?
Seriously… FUCKING WHY?!
It has absolutely ZERO affect on them.
It’s not like we (people with special diets) expect you to cater to us.
We 100% do not expect that, I promise.
If we want to be sure we can eat something, we will take the proper actions.
We will call ahead to the restaurant, or we will bring our own food to your party.
(And on that note, don’t get pissy with us when we do that. We’re not doing it to be offensive, or “make a scene.” Literally the only reason we’re doing it is so that we can feel safe eating something. Making a scene is the opposite of what we want to do, which is WHY WE TAKE THESE ACTIONS.)


If someone tells you they can’t eat something, accept it and move the fuck on.
Confession #1,698

I live with emotionally abusive parents who do shit-all to accommodate my fibromyalgia/CFS and “don’t believe it’s real”. I don’t want to move halfway across the country with them next year so I’ve decided to open up a full-time etsy store and hope for the best. I really despise how so many spoonies find themselves in abusive circumstances because their disability prevents them from becoming independent.

I am all for disabled!bucky

I want Bucky who has debilitating joint pains because of the metal arm.

I want DPD Bucky who can’t grip his identity because he has had it torn away too many times.

I want Brain Fog Bucky who can’t string a sentence together some days.

I want Intermittent Explosive Disorder Bucky who cannot control his temper because he has always be taught to hone it into violence.

I want wheel chair bound Bucky with neuropathy from too many bullet wounds.

I want PTSD Bucky who can’t leave the house some days because the flashbacks are too much.

I want autoimmune disorder Bucky who’s body has not accustomed to being thrown into the new world with new allergens and has responded with histamine overload.

I want brain damaged Bucky who struggles with coordination, memory, facial recognition and speech.

I want my marvel characters to have symptoms that are realistic to their backstory/ traumas.

It was just a LITTLE crisis

No, really. When myasthenia gravis flares to the point you have to be hospitalized, they call it a “crisis.” But compared to August’s Month-o-Doom where I spent 28 days in the hospital and came frighteningly close to stopping breathing, this one was easy peasy. In and out in four days. Got an extra 120 grams of IVIG, spent a few days on strict bed rest using bipap to breathe, and I’m home. Recovering though still flimsy. (That’s my word for it, because “weak” bugs me, even though technically that’s exactly what is going on with mg: it makes your muscles weak because they can’t respond to nerve impulses.) So compared to how scary and protracted the last one was, this was nothing.

I’m gaining strength by the day. I got to come home Friday night. I am so glad to be home. And I’m being evaluated Wednesday for a power wheelchair, which the hospital PT said she’d recommend, too, so hopefully that will happen and then mobility will be mine.

OK, that’s all the good and newsworthy stuff I have to say. Stop reading here if you want to avoid the self-pity party.

Keep reading

You can’t turn on the TV without seeing one of those commercials from a local lawyer telling people to use them to sue somebody for their injury 

And yet disabled people are the ones making a mess of the court systems?

It must be so inconvenient for you to wait for your trial about how you slipped in Walmart because one of us is trying to fight back against illegal segregation

Imagine how much they would complain if we tried to fight legal segregation

That fibro thing where...

Your dreams are really vivid and your short term memory is really sketchy, so you’re never quite sure what actually happened and what was just imagined. Excellent 👍

Feelin’ hungry? CFers need 30%–50% more calories than the average person, which adds up to 3,000–5,000 calories daily. Healthy fats are the best source for getting that additional nutrition, so say hello to that extra side of guac or maybe a vinaigrette on your next salad. As always, talk to your doctor about any major changes in your diet.

You’re not your day that went wrong.
You’re not your relationship.
You’re not your abusive ex.
You’re not your shitty job.
You’re not your appearence.
You’re not this bad phase.
You’re not the insecurity they caused you.
You’re not those things they say you are.
You are a beautiful soul and you don’t need people telling you otherwise. Everything will be fine.
It’ll pass. Let’s be strong ♡