Rare Disease

When my daughter was first (mis)diagnosed with a rare disease in 2013, not only was I utterly devastated by the news that she had a progressive disease, but I was also shocked beyond reason by the realization that such a disease even existed in the first place. That moment was reality-altering. In fact, I remember very little from that day, except [...]

Story

Close up shot of woman eye looking at camera

Glenda McCoy

•

Rare Disease

Pinned

How My Daughter's Rare Disease Opened My Eyes

Be first

491

www.instagram.com/thomas_of_copenhagen

Post

Mighty Leader

Group Leader

Thomas Ousterhout PhD

•

@thomas_of_copenhagen

Conquer Your Mind 4h

See full photo

When you’re struggling with depression or low self-worth, it’s easy to start looking outside yourself for proof that you matter. A compliment, a relationship, success, attention, or someone choosing you can make you feel better for a while. But when your sense of worth depends entirely on what comes back from other people, it can disappear just as quickly.

There’s nothing wrong with wanting love, connection, or reassurance. We all need those things. The goal isn’t to stop needing people. It’s to stop believing that other people get to decide your value.

You deserve to experience love from others without needing it as evidence that you are worthy of love in the first place.

What is one quality you value in yourself that has nothing to do with anyone else’s opinion?

Also, if you're going through a tough time right now, I want you to know that I post daily mental health videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer:

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

2 reactions

Be first

Post

Group Leader

•

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

52 Small Things 8h

See full photo

What accomplishments make you look back and think, "I really did that!"?

Let's share our greatest accomplishments today, shall we Mighties!? Think about the moments where you look back and say, "I really did that!" These can be times when you overcame a challenge, persevered, got a degree, achieved a health goal, decided to do something that benefited you, or got out of your comfort zone.

Mighty staffer @sparklywartanks accomplishments are when she graduated from college with honors, when she hosted her first event, and when she began to volunteer her time to talk with grade school students about the importance of mental health.

3 reactions • 3 comments

www.instagram.com/thomas_of_copenhagen

Post

Mighty Leader

Group Leader

Thomas Ousterhout PhD

•

@thomas_of_copenhagen

Conquer Your Mind 1d

See full photo

When you’re struggling with depression, it can feel like you’re constantly measuring yourself against the person you think you should be. You should be happier by now. You should be stronger. You should have made more progress. And when you don’t meet those expectations, it becomes another reason to be hard on yourself.

But healing isn’t a test you pass by becoming perfect. Some days you’ll make progress, and some days getting through the day will be the progress. Learning to treat yourself with compassion on both kinds of days is part of recovery too.

You don’t have to hide the fact that you’re still figuring things out. You can be struggling and still be growing at the same time.

What’s something you wish you could be a little more compassionate with yourself about?

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

23 reactions • 11 comments

Nox Cinis Caelum WonderPup

Post

•

@puppy_nox

hippain 1d

See full photo

G'morning

I woke up.
Clearly waking up each day is a trap.
The assassins are shitty.
But oh gosh
Whoever flipped the migraine switch...
And oh fuck
My right side from below my ribs and to my knee.
I am so glad I'm not leaving my apartment for any reason today. This pain is ridonkulous.
But I made a cold PSL this morning.
It's almost entirely pumpkin ingredients except for the creamer. The creamer was an ounce of creme brulee. It was all that was left in the bottle. It pairs lovely with pumpkin. But I think the next flavor I'm gonna get is butter pecan.
So I'm very excited cuz I ordered a bag of the new flavor of Javvy and it's coming in a few days. It's toffee nut flavor. I ordered 3 bags. The reviews on the new flavor is phenomenal.
It's been 2 weeks since I last had Javvy and I'm just miserable. The pumpkin pie flavor protein powder is good but it's half of the drink ingredients I need. I'm trying to make a chocolate hazelnut pumpkin latte. It's the best coffee I've ever had.
I'm hunting for affordable chocolate hazelnut flavor instant coffee. Or just hazelnut. I can add either chocolate syrup or hot chocolate mix.
I need a new french press. I had wanted to share my favorite tea with Pauley last night. But we currently can't locate the unopened bag. I'm sure we'll find it.
My favorite tea is actually an autumn flavor that I discovered about 8 years ago. It's called psychocandy. It's roasted pumpkin, caramel, and rooibos. Technically it's not a true tea. It's a tisane. Most of the tea I drink are tisanes. They're herbal, fruity, bright and vibrant. But psychocandy is deep and sweet and delicious. I prefer sweetening it with maple sugar.
My right hip just popped for the 5th time today. It's kinda squishy.
I rescheduled my appointment for having the 2 bumps on my head lanced and drained. Mostly because it's not even remotely squishy. It's a hard bump and it's growing. I saw my doctor a week ago. She asked me what I need help with and I pointed it out to her and said "I'm pretty sure this is a Pilar cyst." She immediately started to Google "Pilar cyst identification". Sigh.
Then I told her about the regrowth of the SEL. She had no idea what it was. I tried to explain in very simple terms. I told her to talk to her boss and tell him "Nox's SEL grew back" cuz he loves rare diseases.
My lumbar is screaming and my right SI joint is pulsing. I'm gonna eat half of a pineapple gummy. It's gonna make my pain go away but I won't get a buzz. I think they taste like pickles.
Here's hoping for the best.
#hippain #FemoralAcetabularImpingement #spinalepidurallipomatosis

2 reactions

Be first

Post

Group Leader

•

52 Small Things 1d

See full photo

When was the last time you felt stuck? What did it feel like?

No matter what part of your life is affected, feeling stuck can be tough, especially when you don't know what's coming next or how to move forward. Learning how to identify when and why you're feeling stuck can be the first step to overcoming it.

Let's share our own experiences today. When was the last time you felt stuck? What emotions came up? How did you overcome it?

Mighty staffer @sparklywartanks felt stuck after realizing she had been putting too much time and energy into something that was draining her mental health. She’s learning that she doesn’t have to do everything for everyone and that it’s OK to set firmer boundaries while prioritizing her own needs.

5 reactions • 4 comments

Post

Group Leader

•

52 Small Things 3d

See full photo

Who or what inspires you to keep going?

Hi Mighties!

A new week means a new theme, and the topic for this week is 💫 inspiration 💫.

In its simplest definition, to inspire is to spark or create a feeling of confidence, motivation, or desire to do something. Inspiration can come from many different places, such as art, the environment, other people, books, and music, and can influence a myriad of ideas, both new and old.

Today, let's share who and what inspires us to keep moving forward.

Mighty staffer @sparklywartanks says that her family and passions inspire her to keep going.

What about you? 👀

2 reactions • 2 comments

Nox Cinis Caelum WonderPup

Post

•

@puppy_nox

And just like that I'm pissed off

One of my friends messaged me. They ask a lot of questions, like what's SEL and what's nerve ablation and why don't you ask a friend for a ride to xyz...etc.
Today I explained that I don't have any friends in Michigan. And immediately she starts asking me very personal questions and I am not having a good time so I stepped away.
The stress from all the questions triggered a migraine. And not a mild one. And this isn't the first time I've gotten a migraine from talking to her. I should probably cut ties. I keep thinking that having big scary rare diseases is my burden to teach people about. But it's not.
SEL isn't even listed here.

4 reactions • 4 comments

Post

Group Leader

•

52 Small Things 6d

See full photo

What is something you want to accomplish before the end of the year?

We're over halfway through the year, but that doesn’t mean we've run out of time or opportunities to accomplish what we want. We can work toward, prioritize, change, or adjust different aspects of our lives as we see fit. We are Mighty after all! 💪⭐🏅

What is something you want to accomplish before the year has ended?

(edited)

14 reactions • 11 comments