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When Your Child With a Rare Disease Doesn’t Feel Brave

Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows [...]

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Glenda McCoy

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Rare Disease

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How My Daughter's Rare Disease Opened My Eyes

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 [...]

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Describe your biggest strength using only one word.

Happy Monday, Mighty friends! 🔆

Let’s start the week by identifying our biggest strengths—the qualities that make us who we are, the skills that set us apart, and the ways we show up for ourselves and others. Strengths can be interpersonal, intellectual, emotional, or spiritual, and can be rooted in our values, interests, talents, and resources.

Using one word, describe your biggest strength below. ✨

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #ADHD #BorderlinePersonalityDisorder #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #Depression #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

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@52smallthingsaccountabilitybuddy

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Where do you find meaning and purpose in life?

Happy Monday, Mighties!

This week our 52 Small Things theme is harmonize.

We often hear the phrase "harmonize" when we're referring to the synchronization or blending of music or video to create pleasant sounds and visual effects, but what does harmonizing mean when it comes to self-care?

Just like with blending, balancing, or combining sounds and melodies that work together in oneness to create music to make a song, when we live in harmony with ourselves and with others, we are introducing balance and "togetherness" so we are on the path that feels most right to us. Harmony with ourselves can look like knowing and accepting who we are, making decisions that are most beneficial to us, walking in our purpose, and living in our truths.

And in order to reach a state of harmony in our lives, it’s important to identify where we derive the most meaning and purpose so we can continue to nurture those connections, environments, and responsibilities. Is it caring for your family that brings meaning? Your career? A specific skill or duty? Your faith?

Let us know in the comments below! ⬇️

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

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@j9stoday

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Rare disease-in it….

I know Thymoma is rare. It was clear that my doctor was blowing me off when initially my numbers didn’t cause any concern. I waited, did more tests, then one of the tests results required that I get a ct scan, I hate that thing and the contrast but I know it’s there for my benefit. But where is the actual benefit? If it shows off a brand spanking new tumor the treatment is another sternotomy. And if nothing of concern shows up I’m still underserveilance by the medical term that directs my care.

So being blown off by the ER Dr wasn’t an issue for me. I’m confident that my medical records require diligence and respect by the consistent comment: “You’ve been through a lot.” To which I just usually nod yes, quietly.

After hours, I arrived at the ER at 5 in the morning and it’s the afternoon now, I am still here waiting (and ready) to go home. I already started removing the tape from my IV because I know how. (I used to work an emergency medicine)

The surprising thing is the fact that The Doctor Who blew me off initially, actually acknowledged his behavior and mentioned how easy it was to assume based on normal test results. I SO appreciated and respect that, as a human being. He could have acted like all was well and never acknowledged his behavior choice. It’s super cool to be treated humanely when your own body disrespects you with a movement disorder…..just sayin’.

Now I am riding home in an ambulance simply feeling grateful. There was no tumor growing in my mediastinum today and I will leave tomorrow to it’s own devices. :)

Have a great week.

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

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If you could create your own love language based on your health needs, what would it be?

On a fundamental level, we all have different needs because our life experiences are unique to each of us.

And for those of us here on The Mighty who have an added layer of health conditions to take into consideration, those needs may change or fluctuate depending on each day. Our love languages, in turn, may also be affected.

If you can create your own love language based on your health needs, what would it be?

Mighty staffer @sparklywartanks love language would be open and engaging conversations, and patience with one another.

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Thomas Ousterhout PhD

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@thomas_of_copenhagen

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Balance is strength.

Many people think they have to choose between being strong or kind, confident or humble. But real emotional strength comes from balance. It’s about knowing when to stand your ground and when to let go, when to speak up and when to listen. The more aware you become of your behavior and your reactions, the more control you have over how you show up in different situations.

Which one do you find hardest to balance: being kind without being passive, or being strong without being harsh?

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.instagram.com/thomas_of_copenhagen

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

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@takeamightyminute

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How has your sleep been this month? 😴

Hi Mighties! 💫

Mighty staffer @sparklywartanks has been having more trouble than usual getting enough hours of sleep, especially since Daylight Saving Time a few weeks ago.

How has your sleep been? What challenges have you been facing? What has been helping you sleep better?

Feel free to share with us below! 🌙

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

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How do you like to show love to others?

When we talk about love languages, we often focus on the different ways we would like to receive or be shown love from others, but it can also extend to the ways we like to show love to others as well (because it’s important for relationships to be reciprocal, too!).

Either using the love languages themselves or with your own examples, share how you like to show love in the comments below.

Mighty staffer @sparklywartanks likes to show love using words of affirmation and appreciation, creative quality time, and also making or buying gifts to share with others.

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Thomas Ousterhout PhD

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@thomas_of_copenhagen

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Nothing Will Go As Planned. And That’s a Good Thing.

A lot of anxiety comes from trying to predict how life is supposed to unfold. We create expectations about the future, and when reality doesn’t match them, we feel disappointed, stressed, or out of control. But the truth is that life rarely follows a fixed plan. Many of the most meaningful experiences come from things we didn’t expect or even tried to avoid. When you loosen your grip on expectations and focus more on taking action in the present, you create space for growth, learning, and opportunities you couldn’t have planned for.

What is something in your life that didn’t go as planned but turned out better than you expected?

If you want to learn more about this, check out my video by clicking on one of the links below.

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

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Rare Disease

Related Conditions?

When Your Child With a Rare Disease Doesn’t Feel Brave

How My Daughter's Rare Disease Opened My Eyes

Describe your biggest strength using only one word.

Where do you find meaning and purpose in life?

Rare disease-in it….

If you could create your own love language based on your health needs, what would it be?

Balance is strength.

How has your sleep been this month? 😴

How do you like to show love to others?

Nothing Will Go As Planned. And That’s a Good Thing.

Feed for Rare Disease