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 [...]

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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

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

52 Small Things 1h

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What type of rest do you need to prioritize this weekend?

Did you know that there are 7 different types of rest? Depending on what your body needs can help determine what type of rest would benefit you the most.

Here are the 7 types of rest:

🛏️ Physical rest: This type of rest is for your body from strenuous physical activities. Some examples of physical rest can include napping, relaxing, sleeping, and even massages or yoga.

🧠 Mental rest: Rest for your mind is important especially for those who experience racing thoughts or have trouble sleeping. Taking breaks, journaling, or other types of mental health self-care will allow you to mentally rest.

🤯 Emotional rest: To emotionally rest is to allow yourself to be real and authentic with others as well as yourself. Emotional rest gives you the time and space to feel your feeling and openly express them.

👃👂Sensory rest: Everywhere we look there is some type of sensory stimulation like TVs, phone screens, bright lights, and music to name a few. Sometimes we need rest, a break, and time to ourselves from all the outside stimuli that may overwhelm our senses.

🎨 Creative rest: For our creative minds out there, this rest is for you! To achieve creative rest is to take the pressure "to do" from yourself. Creative rest can look like taking a step back from projects or problem solving, and sitting in nature appreciating what you see around you.

👪 Social rest: This type of rest requires you to understand how you function around others. Do you gain energy from social interactions or does it drain you? Realizing your needs in social settings can help you to make decisions around how frequent and for how long you spend in crowds or other social spaces. This doesn't necessarily mean you have to separate yourself from others, but more so how and when you spend your time.

🕊️🧘 Spiritual rest: Spiritual rest relates to our connection and relationship with something deeper and greater than ourselves. This rest can look like intentional time in meditation, prayer, community building or other practices that give us life.

What type of rest do you need this weekend?

Want to know more about the 7 types of rest, check out this article here:
The 7 Kinds of Rest You Actually Need

The 7 Kinds of Rest You Actually Need

Feeling exhausted? There's more than one way to rest—and you might not be addressing them all.

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52 Small Things 1d

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What can you say "no" to right now?

When you live with a health condition, work or attend school every day, and/or have a boatload of responsibilities (like a family!), sometimes saying "no" is imperative. Those two little letters can help you preserve your very valuable energy, and allow yourself more time and space to do what’s best. Saying "no" is a form of self-care and can definitely be necessary in certain circumstances! 👏

Mighty staffer @sparklywartanks says she’s saying “no” to perfectionism and overworking herself. She wants to take her time and do her best.

What about you? What are you saying "no" to?

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52 Small Things 2d

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Surprise! You have an extra 30 minutes to yourself today. How will you spend it?

We don’t know about everyone else, but sometimes it doesn’t feel like there’s enough time in a day to get everything done, let alone practice self-care. More time in your day (we hope it actually comes true!) — even just 30 minutes — can provide the opportunity to take a break, watch a quick episode of your favorite show, or even indulge in a power nap if you find those helpful.

If you were able to get an extra 30 minutes today, how would you spend it?

Share in the comments below! ⬇️

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saida mahoney

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@wondergirlsaida

My Body Has Limits. My Spirit Does Not

Hi, my name is Saida Mahoney, and this is my story.

I live with chronic paralysis due to my genetic disease called Partial Trisomy 8q Duplication Syndrome for short Partial Trisomy 8q.

I also struggle with my basic skills certain shoes and outfits are very hard for me to put on and handle due to my conditions.

Every day, I navigate a body that does not always move the way I want it to. My balance is severely affected. My motor skills and gross motor skills can make even simple tasks more difficult than most people realize.

There are moments when I lose my balance. There are times when I fall, I stumble and every once in a while my body will tilt to the side.

There are days when my body reminds me of its limitations before I even take my first step.

Living with chronic paralysis is not easy.

It takes patience.

It takes determination.

It takes courage.

It takes grace.

It takes getting back up—sometimes literally.

There are challenges that people see, and there are many more they never do. Every movement requires time and thought.

Every day requires adaptation. Every accomplishment represents persistence that often goes unnoticed.

But this is only part of my story.

My disability has never taken away my ability to dream, to love, to learn, to advocate, to lead, to create or to make a difference.

It has taught me resilience when life became difficult and painful.

It has taught me strength I never knew I had.

It has taught me compassion for others who face invisible and visible struggles.

It has taught me to celebrate every step forward, no matter how small it may seem.

I refuse to let my disability define my worth.

I am more than my diagnosis.

I am more than the challenges I face.

I am a writer.

I am an advocate.

I am a member of the disability community, rare disease community and paralysis community and I am proud of who I am and what I am.

Every fall has taught me how to rise again.

Every obstacle has reminded me that progress is still progress.

Every challenge has shown me that strength is not measured by perfection—it is measured by the courage to keep moving forward.

If my story helps even one person feel seen, understood, heard or hopeful, then sharing it is worth it.

I will continue to live my life with courage.

I will continue to advocate for accessibility, inclusion, and dignity.

And I will continue to move forward—one step, one victory, and one day at a time.

My body has limits.

My spirit does not.

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#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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Take a Mighty Minute

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@takeamightyminute

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What's your easiest symptom to manage right now? What symptom is the most challenging?

Hi, Mighties! 🌷

How's your Monday going? How are your symptoms today?

What symptom feels the easiest to manage right now? What symptom has been the most challenging?

Check in with us below! 📒⬇️

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52 Small Things 4d

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TRUE or FALSE: Prioritizing self-care comes easy to me.

When we use the term "self-care," we may understand it to loosely mean the practice of setting time and energy aside for ourselves and our needs in order to promote wellness and manage our health. This may look different for everyone depending on how they define what works best for them, but in reality, actually engaging in self-care may be roadblocked by unavoidable or unforeseen circumstances.

What are your thoughts on prioritizing self-care? Is it easy for you? What kind of roadblocks are in your way?

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Carla

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@carla1234

52 Small Things 6d

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Write a list of your priorities for next week.

List time, Mighties! Let's look at the week ahead and write a list of priorities.

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

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Carla

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@carla1234

52 Small Things 1w

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What helps you keep track of your most important priorities?

Whether you use an alarm, a calendar, a daily agenda, or other resources, it can be super helpful to have a system set in place that helps you keep track of your important priorities.

Do you have anything that helps you keep track of your priorities? If you use a specific app, what's it called?

#52SmallThings #CheckInWithMe #selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression

#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

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