Autonomic Dysfunction

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I Couldn’t Save Him—But He Saved Me

March 6th, 2008 was my first night back in Texas. I wasn’t home for spring break to rest—I came back to see a doctor about my spine. My spinal fusion had failed, and I was in so much pain I could barely function. Though my parents hadn’t fully believed I was sick, they had become increasingly worried after months of phone calls filled with desperation and tears. I was barely hanging on, physically or emotionally.

And then, while I was facing my own unraveling health, I got the call.

My roommate told me that our friend Scott had overdosed. Prescription pills—his usual escape—had taken him too far. He was unconscious, not breathing, and in that moment, I felt entirely helpless. I told my roommate to start CPR and call 911, but inside, I was collapsing. Scott was one of my best friends. My cheerleader. My light in a dark time.

Just hours later, I was in a doctor’s office being told that my surgery had failed. I was labeled a medical anomaly. They said they could manage my pain, and handed me a prescription—for the exact type of drugs that had just taken Scott’s life.

I stared at the paper, horrified. If Scott—strong, bright, and full of love—could fall into the trap of pills, what would stop me from doing the same? This was the first time I looked a doctor in the eye and thought, No. I didn’t know what my options were. I just knew I couldn’t follow that path.

Scott’s death shattered me, but it also woke something in me. I could no longer accept a life numbed by medications and shadowed by despair. His passing was the beginning of a lifelong quest—a promise to myself that I would find a better way to live. Even if I didn’t know how yet.

If you’ve ever felt like there’s no way out, I promise: there is. You just haven’t seen all the doors yet. #EhlersDanlosSyndrome #AutonomicDysfunction

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Weekend Thoughts - Share a song that helps you cope!

Whenever I need help opening up or being brave, this is one of the songs on my playlist.

I'd love it if we shared some of our favorite songs you love when you need music to cope!
#PTSD #Addiction #MentalHealth #AutonomicDysfunction #CeliacDisease #Migraine #Schizophrenia #BipolarII #BipolarDepression #BorderlinePersonalityDisorder #Anxiety #ChronicFatigueSyndrome #Lupus #Cancers #ADHD #Autism #AnorexiaNervosa

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Story of the Week: What's your take on self-care when you live with a chronic illness?

We often hear about self-care and think of it as prioritizing your needs, getting outside, taking breaks, or enjoying the occasional bubble bath. But self-care is so much more—especially when you're living with a chronic illness. There are added layers of considerations, demands, and limitations that are often overlooked.

What are your thoughts on self-care while managing a chronic illness or chronic pain? What does self-care look like for you? What do you wish others understood about taking care of your needs and health as someone with a chronic condition?

📖 Need a thoughtful read on the topic? Check out today's Story of the Week here: 5 Alternative Thoughts on Self-Care for Chronic Illness

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction
#PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis
#Cancer #Anxiety #PTSD
#CheckInWithMe

5 Alternative Thoughts on Self-Care for Chronic Illness

“Bubble baths and ‘me’ time are great, but there’s much more to it than that.”
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Working with Chronic Illness

Hi friends!
I really need some sort of remote job to afford, ya know, general living costs and trying to be a healthy human being. I’ve tried to get reliable remote positions but I can’t find anything other than freelance work.

I have experience with marketing and AI, but I don’t have a ton of experience. If anyone has any recommendations, that would be amazing!!!

#chronicsyncope #MastCellActivationDisorder #EhlersDanlosSyndrome #AutonomicDysfunction #ComplexPosttraumaticStressDisorder #RheumatoidArthritis #BrainInjury

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Checked out this year

Mentally checked out.
Hardly keeping up.
Running myself into the ground day in day out.
These last two years have been tough.
Trying not being on autopilot all the time .
Not feeling like I’m living, just going through the motions .
Am I happy ? Am I not ?
#MixedConnectiveTissueDiseaseMCTD #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction

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Monday Motivation - Opposite Action!

Opposite Action is a DBT skill where you do the opposite of what you *feel* like doing. It's one of the best ways to cope and it's a game changer for mental health!
#PTSD #BorderlinePersonalityDisorder #Grief #BipolarDepression #AutismSpectrumDisorder #MentalHealth #Addiction #Schizophrenia #Agoraphobia #Anxiety #ChronicFatigueSyndrome #Lupus #SjogrensSyndrome #Migraine #AutonomicDysfunction

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Topic/Question Just for Fun and Connection 🙌🙌

To help encourage us to remember that we are more than our chronic illness(es) or any diagnosis, and to remember that we Are building friendships right here -

In the spirit of the current, Biggest, Buzz-Worthy, Trending Topic, MOVIES awards show airing Sunday night the Oscars🙌🤩🏆🍿🎥🎬

Let’s use this post all weekend Starting Now And And Into Next Week to connect through the art, power, storytelling, …and your particular views on any film. I will keep it as wide-ranged as that for a fun, varied, connecting conversation back and forth below 👇 in the comments!

#Loneliness #Grief #DistractMe #FamilyAndFriends #Relationships #IfYouFeelHopeless #Depression #Anxiety #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #DepressiveDisorders #PersistentDepressiveDisorder #MoodDisorders #MDD #Agoraphobia #MentalHealth #MightyTogether #ADHD #BorderlinePersonalityDisorder #ChronicIllness #IntellectualDisability #AutismSpectrumDisorder #MyCondition #RareDisease #ChronicPain #ChronicFatigueSyndrome #ChronicFatigue #Migraine #Selfharm #Selfcare #Mindfulness #SuicidalIdeation #SuicidalThoughts #SuicideAttemptSurvivors #Suicide #ComplexPosttraumaticStressDisorder #PTSD #MyalgicEncephalomyelitis #PostTraumaticStressDisorder #PsoriaticArthritis #Trauma #Cancers #AlopeciaAreata #AuditoryProcessingDisorder #CerebralPalsy #BipolarDisorder #DownSyndrome #Addiction #Lupus #HashimotosThyroiditis #AutoimmuneThyroidDisease #BipolarDepression #HypothyroidismUnderactiveThyroidDisease #ObsessiveCompulsiveDisorder #AutonomicDysfunction #ParkinsonsDisease #PosturalOrthostaticTachycardiaSyndrome #POTS #EatingDisorders #AnorexiaNervosa #BingeEatingDisorder #Dyspraxia #BrainInjury #MotorDisorders

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Growing Pains

A lot has happened recently. I made those I love aware about my harmful thoughts towards myself. I'm going to start therapy soon, and I've started on a medication, as well as my family finally acknowledging my medical condition. I have something very similar to POTS, called autonomic dysfunction. This is one of the many things that has contributed to my mental health, and now my family realizes how bad it is. Though I am getting help, this is called "Growing Pains" for a reason. My condition is manageable, but chronic. I have to take in a lot of sodium to help manage it, and it's really hard. That and the medication I mentioned has been rough on my stomach. I might be getting help now, but things aren't perfect. Anyone else healing, its a process. These growing pains will be there, but I think everyone needs to remember, it just means we're growing, and getting better. Stay safe, and I appreciate you all. #Depression #AutonomicDysfunction #Awareness #growing

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Story of the Week: What hacks do you use to make cooking easier?

Managing daily tasks like cooking, cleaning, organizing, or running errands while dealing with a health condition and limited energy can be challenging and overwhelming. Finding ways to check things off your to-do list more efficiently can save time and help conserve energy, too.

What helps make cooking easier for you?

📚Need some inspiration? Read our Story of the Week here!
8 Cooking Hacks For When Illness Makes Cooking Seem Too Overwhelming

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction
#PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis
#Cancer #Anxiety #PTSD
#CheckInWithMe

8 Cooking Hacks For When Illness Makes Cooking Seem Too Overwhelming

"Some of these tricks and tips can really come in handy."
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This is distressing…TW…abuse mentioned.

I have been dealing with a situation that has culminated in my son facing criminal charges as well as civil penalties involving vulnerable adult abuse against me. It is all finally coming to a head and hopefully the end is in sight without completely distorting our parent child relationship. My current situation is that the extreme distress has caused my first physically overwhelming consequences. A week ago today I broke out in hives that keep getting worse. Some of them started blistering yesterday. I am in an assisted living facility and a histamine diet is not possible. The residence claims they can’t do that and stay within state mandates. Benadryl is not doing anything. I don’t know what else I can do for some relief. Suggestions and ideas no matter how crazy they might be? I do not have a current physician that is familiar with MCAS. I have an appointment with a new allergist/immunologist but not for another 6 weeks! I have so many symptoms besides this both mental and physical health related. But this is the most urgent at this point. ANY and ALL suggestions are welcome… #PTSD #MastCellActivationDisorder #Histaminediet #vulnerableadult #Abuse # #Hives #BorderlinePersonalityDisorder #Anxiety #DID #MentalHealth #Insomnia #MajorDepression #HEDS #AutonomicDysfunction

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