Rare Disease

Life with achondroplasia can come with a lot of challenges, but not all of them are expected. Has there been one particular aspect that’s surprised you the most (good or bad)?

Whatever they may be, share your surprises with us in the comments below.

#RareDisease #Dwarfism #Achondroplasia #Parenting #Caregiving #ChronicPain

Today is opening day of baseball season, and I have very fond memories of attending games when I was physically able. Taking my kids was the best, and going with friends was some of the most fun I've ever had. One of the coldest days in my life was at an MLB game in April. I'll probably never attend another game in my life because of my disability. That's sad, but I'm at peace with it. I'm grateful for those good times and all the happy memories.

(Image is the1895 Cleveland Spiders. Source:WikimediaCommons)

#ChronicIllness #ChronicPain #MentalHealth #Disability #DistractMe #RareDisease #Fibromyalgia #CheckInWithMe #ComplexPosttraumaticStressDisorder

Last week I went to three different emergency rooms in the span of three days. I was facing the dreaded status migrainosus with the added bonus of severe nausea and everything else that goes into a protracted migraine attack. I was in the worst pain I think I’ve ever experienced — which is saying a lot.

The ER visits ranged from somewhat helpful to actively harmful. So it goes when bringing a chronic condition to the emergency department, I suppose.

As a chronic illness and rare disease patient with a dash of mental illness on the side, I don’t choose to go to the ER lightly. As I’m sure many of you know all too well, it takes a lot to decide to seek emergency care when you live with a chronic illness or rare disease. We may have medical trauma, distrust in the health care system, or maybe even feel like we don’t deserve acute care when our chronic conditions throw us a curveball.

But, if and when the time comes to go to the emergency room, we have to be prepared. And who better to share advice about seeking emergency care than our community?

So, Mighties, what tips do you have for going to the ER/A&E with chronic illness and rare disease in tow?

P.S. Your answer may be used in an upcoming Rare Weekly newsletter!

#CheckInWithMe #ChronicIllness #ChronicPain #Disability #RareDisease #Migraine #Spoonie #Hospital #MentalHealth

I know when people talk about self-love, that for many, it can seem like such a foreign or mysterious concept. Fortunately, there are many simple and practical ways to begin practicing this. One of my favorites is watching mindfulness video of my favorite teacher, Mooji, online for free. If you don't like his approach, there are many other beautiful teachers that have plenty of incredibly useful instructions online also for free. Do any of you have any other ways you practice self-love?

~ Thanks to all. Thanks for all. ~

Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

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

We all have different levels of responsibilities, tasks, and daily chores that take up a portion of our day and brain space because, well... we just have to get them done. (Adulting is #fun!)

But, do you ever feel like there’s one or more of those things that take up much more time than it has to and could use a revamp or different approach?

For Mighty staffer Nina that thing is how long it takes her to make a purchasing decision while shopping for herself. She can definitely benefit from simplifying her decision-making process so she feels more confident and it takes her less time and energy to shop.

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

Mighties, March has felt like such a long month for me 😩. My thoughts have been racing for the longest time. I think it's time for me to prioritize some self-care that'll boost my self-confidence.

What usually helps me the most is getting my eyebrows done, getting dressed up, and taking myself out on a solo date. I'll make sure to add that to my to-do list right away 📆✍️.

What about you? What do you do to help boost your self-confidence?

#CheckInWithMe #Grief #MentalHealth #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #ObsessiveCompulsiveDisorder #PTSD #EatingDisorders #ChronicIllness #RareDisease #ChronicPain #Spoonie #EhlersDanlosSyndrome #CrohnsDisease #Cancer #Migraine #Fibromyalgia #MultipleSclerosis

This past month I’ve been listening to so many different types of playlists!

From the playlists I’ve made myself based on my moods or interests, to the algorithmic playlists curated by YouTube, Spotify, or Pandora, to the random ones I find when I click on a new artist — I’ve found so many new songs or old classics to listen to. I think my favorite one has to be the 90s playlist YouTube suggested for me this month. I just love it! 🎶😌

What type of playlists are your jam?

#DistractMe #CheckInWithMe #MentalHealth #MightyMusic #Disability #ChronicIllness #ChronicPain #RareDisease