Autonomic Dysfunction

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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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An In-Depth Look At What “Self-Love” Looks Like, How It’s Different Than “Self-Care”, And A Reminder That Self-Love Is At The Top Level Of Everything

There is More talk about Self-Care than the Most Critical Key to Happiness and Great Relationships of all types——-“SELF-LOVE”.

With this in-depth look at what Self-Love looks like-for your own personal growth, I would like you to take an honest look inwards and determine if you Practice Self-Love.
If you’re not, or if you’re not doing all of the bullet points given below, don’t worry— “Each morning, we are born again. What we do today is what matters most.”

As always, let’s have a great conversation about this topic below 👇 in the comments where you can use this space for your own place in your mental wellness journey. Not your mental illness journey— I am here as a friend to guide you through to the other side as much as possible—yes, that is where I stand, and the magic only happens if you let me—so how about more group members join in for your sake.

The Mighty friends that have opened themselves up to this opportunity are telling me and showing me that they are really starting to get it, and they are taking bigger, new, determined steps in their lives.

"Self-Love" refers to a deeper internal state of accepting and valuing yourself unconditionally, while "self-care" focuses on taking practical actions to maintain your physical and mental wellbeing, like getting enough sleep, eating healthy, and engaging in activities you enjoy; essentially, self-love is the mindset that drives you to practice self-care. Self-Love is the mindset too that heals the pain and keeps you in the light, Determined to keep pushing away any darkness and to stop doubting yourself.

Key points to remember:
* Self-love:
* A feeling of intrinsic worth and acceptance, regardless of circumstances
* Becoming your own best friend - treating yourself with the same respect and understanding you would give a close friend.
* Be the love you never received.
* Includes embracing your flaws
* Foundation for setting healthy boundaries and prioritizing your needs
* learn to say no when needed and clearly explain why
* Don’t seek Anyone’s validation
* Positive self-talk: Use encouraging language to speak to yourself, focusing on your strengths and accomplishments.
* Pay attention to your thoughts and feelings, recognizing negative self-talk and actively replacing it with positive affirmations/relabel upsetting thoughts
* Say something nice to yourself in the mirror — looking into your eyes & smile at yourself & say “I love you”and your name. (Yes, I actually stop myself to do this & it’s Wonderful)
* cultivate self-compassion
* Encourage Yourself
* Talk to someone you trust who *Has The Capacity To Listen*-and, Another Big Key Here is that ***Being vulnerable - completely honest and thorough- about what you’re going through with someone else is a major form of self-love because you’re taking the time to dig deep, regardless of how uncomfortable it is, And, on top of that, you’re showing yourself that you want to work out whatever’s going on with you***
* avoid comparing yourself to others
* practice gratitude
* Seek out opportunities for growth
* Creating a safe zone all your own is an act of self-love because it gives you a designated area where you can focus on your needs and emotions instead of other people’s. The key here is creating a space that feels good and peaceful when life is neither of those things.
#MentalHealth #Mindfulness #Selflove #Selfcare #Selfharm #SuicideAttemptSurvivors #SuicidalIdeation #SuicidalThoughts #Suicide #Trauma #MajorDepressiveDisorder #PersistentDepressiveDisorder #Depression #Anxiety #GeneralizedAnxietyDisorder #Agoraphobia #BingeEatingDisorder #EatingDisorders #EatingDisorder #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #LymeDisease #ComplexPosttraumaticStressDisorder #PostTraumaticStressDisorder #PTSDSupportAndRecovery #PTSD #BipolarDisorder #BipolarDepression #AutonomicDysfunction #AuditoryProcessingDisorder #Deafness #ADHDInGirls #ADHD #AspergersSyndrome #AutismSpectrumDisorder #Addiction #CerebralPalsy #IntellectualDisability #Disability #Blindness #BorderlinePersonalityDisorder #BorderlinePersonalityDisorderBPD #Fibromyalgia #ChronicPain #Migraine #IfYouFeelHopeless #BrainInjury #MotorDisorders #MultipleSclerosis #RheumatoidArthritis #Arthritis #Grief #Loneliness #AnorexiaNervosa #Relationships #SocialAnxiety #FamilyAndFriends #Caregiving #CrohnsDisease #CysticFibrosis #AlopeciaAreata #Cancers #EhlersDanlosSyndrome #ParkinsonsDisease #PosturalOrthostaticTachycardiaSyndrome #POTS #Stroke #Diabetes #SelfharmRecovery #RareDisease #DownSyndrome #AddisonsDisease #IrritableBowelSyndromeIBS #ObsessiveCompulsiveDisorder #ObsessiveCompulsiveandRelatedDisorders #ObsessiveCompulsivePersonalityDisorder #DissociativeIdentityDisorder

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PATIENCE: Alicia Keys’ Mindful Life Lessons and the 4th of 9 Foundational Attitudes of Mindfulness As Part of Resilience

Patience - The attitude of understanding that things happen in their own time, including our own experiences.

The importance of patience is also a way to accept the present moment without resistance.

Patience is a form of wisdom.

I would like you to think about where in your life, and in your mental health, that you can apply Patience.

And, as always, to help You even more- Let’s have a convo about this topic by commenting below 👇

Jay Shetty sat down with Alicia Keys on one of the most critical podcasts for us, his (free) podcast called “On Purpose” which is the worlds’ #1 Mental Health podcast.

Side Note: Before he became an award-winning podcast host, Jay Shetty has been a great teacher and guide throughout my journey to mental wellness.

In this conversation/episode called “5 Ways To Overcome Self Doubt & Build Confidence Within, Nov 11, 2024;
Jay Shetty asks Alicia Keys:

“What was the work you had to do in order to go from someone who was anxious, doubtful to become someone who manifested this beautiful, incredible full life?

What was the work in the beginning stages that you had to reorient your mind?”

To this, Alicia Keys says: (who by the way Also lives a life with intention/on purpose with Mindfulness)

“I think one of the things that I had to come to terms with is that pretty much nothing is going to come in the time frame that you think is going to come.”

“And I realized, wait, you know, as hard as I try to push the thing forward, when it's time, it's time. And if it's not time, it doesn’t matter what I do. It doesn't matter how much sleep I don't get.

It's not going to be time until it's time. And so I think that that steadiness of like kind of, you just have to put one foot in front of the other is just as simple as that.”

“And so I discovered that that is how we get where we're going.

Like this increment of small, ***determined*** moments.”

And, she also advises “Have Grace with yourself. It’s alright. You are doing your best and you're going to figure out the rhythm of this thing. Have some grace.
And we can start again and try again and it’s ok.”

Let’s recap the attitudes of our healthiest mental state that I have covered so far in this group: Beginner’s Mind, Acceptance, Non-Judgment, and now too, Patience.

#MentalHealth #Mindfulness #Relationships #FamilyAndFriends #Depression #Anxiety #MajorDepressiveDisorder #PersistentDepressiveDisorder #GeneralizedAnxietyDisorder #SocialAnxiety #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #ChronicIllness #BingeEatingDisorder #EatingDisorders #MoodDisorders #MotorDisorders #BipolarDisorder #BipolarDepression #Agoraphobia #BorderlinePersonalityDisorder #ChronicPain #AutismSpectrumDisorder #Migraine #Selfcare #Selfharm #Grief #SuicidalIdeation #SuicidalThoughts #SuicideAttemptSurvivors #Suicide #ComplexPosttraumaticStressDisorder #PTSD #PostTraumaticStressDisorder #Trauma #Caregiving #IfYouFeelHopeless #Fibromyalgia #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #CrohnsDisease #CerebralPalsy #Addiction #Disability #ADHD

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Forgotten

Feeling forgotten by friends and loved ones. Some new stepping up to the plate.

Life is so weird like that. We know we will pass through chapters and stages throughout life some coming and some going .

Just can’t wrap my head around just poof “bye” as soon as i am not readily available at everyone’s request.

I still overly push myself which I know is at times doing more harm than good for my body but I need to push for the sanity of my mind.

Even before i became unexpectedly ill I’ve felt like people just would use me and toss me when i was no longer of use. Now I just feel like this happens even quicker .

Just scattered thoughts . Has anyone else noticed how people act around them has changed ?

#MentalHealth #Depression #AutonomicDysfunction #POTS #RaynaudsPhenomenon #RheumatoidArthritis #MixedConnectiveTissueDiseaseMCTD

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Need advice from parents with physical disabilities.

I have a two-month old and I have been pushing her around in a portable bassinet when we need to go room to room to make lunch or whatever. the problem is she's about to outgrow her bassinet and I won't be able to push her room to room anymore. I am currently having issues falling and getting dizzy I do wear her when I use my rollator or I'm not too dizzy but that can be a lot and super hard on my back or I'm too dizzy to safely do that so it a not always an option. Anyone have suggestions for adaptive products to help carry/ hold baby /transport room to room??
#EDS #EhlersDanlosSyndrome #OrthostaticHypotension #AutonomicDysfunction #PosturalHypotension #ChronicPain #Parentingwithdisability #assiativetechnology #MobilityAids

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A Mighty Together EASY Game That Needs All Of Us To Work 🤗 👋 🎤🎶🎧 #DistractMe #MightyTogether #MentalHealth #CheckInWithMe

Simply remember or find/Google/ask Alexa or Siri……a line or part of a line from a song or a song title that was written for Empowering all of us.

You are welcome to add in even just one. This is easy because it is not even your words that you are adding in or articulating. The words have been given to us.

For example: I often think of this part of line from a song: “I am going to dance on broken glass.”

And this part song title, part of a line of the lyrics:
“Better Days are coming, if no one told you.”

And this longer one section of another great song:
“DON'T YOU TELL ME WHAT YOU THINK THAT I COULD BE;
I'M THE ONE AT THE SAIL
I'M THE MASTER OF MY SEA.”

And this small section of a song that I hold close to my heart:
“Just remember who you are; how you were never one for folding; how you never liked the corner; how the dark don’t even know you.”

Let’s Go Big on this one.

Let’s make this a holiday gift you can give for free that could be exactly what Many others need Right Now.

This ties in with the image I chose for this because we are going to be taking inspiration from Christopher Reeve aka Superman in the 1978 film who famously said "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles".

So, I say YOU are a hero.

One of our Mighty family with a boatload of reasons to question this quote and anything, just a couple days ago, found, and in a way, smartly challenged my about 4 months old post with Christopher Reeve’s other famous quote “Once you choose hope, anything is possible.”

So, if you know anything about me, you know I accepted this challenge to help her and to help even more of us.

So I went to work for all of us— researching and drafting an impactful reply (and I can at times put hours into this work for all of us.)
Because YOU are worth fighting for.

So, I researched how he could say these profoundly optimistic and empowering statements when he, Christopher Reeve, a former role model to the world as Superman, was paralyzed from the neck down after a horse riding accident at age 42. His mother wanted doctors to remove his life support, because she thought that he wouldn’t want to live like this, but he fought back.

So the meaning to his quote about HOPE is: Hope, in this sense, is a decision. It is the most important decision we can make.

This choice of Hope also is not just wishful thinking, it has to be rooted in a Believing, it must be in the form of Optimism, and it must be held together by handing it over to a trust in ourselves, a trust in the universe having our back, to any form of spirituality that does not even need to be religion based faith.

Absolutely Right Now, All of Our Mighty Family Needs help with feeling Empowered to be Hopeful and Optimistic And YOU can be a hero and participate in this mission that is greater than all of us, greater than our own social anxieties, greater than our own fears and doubts, greater than our fatigue…

Whenever you see this post, especially through the rest of the entire holidays —All of them coming up for all denominations and through and past New Years…add in a line or part of a line from a song, or a song title, that was written for Empowering all of us. That was written to speak to all of us. To Connect All of Us.

GAME ON.

GAME FACE.

YOUR friend in this hard thing called life,
Dawn

#Depression #Anxiety #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #PersistentDepressiveDisorder #MoodDisorders #Selfharm #Selfcare #Grief #ChildLoss #BipolarDisorder #Suicide #SuicidalThoughts #SuicidalIdeation #SuicideAttemptSurvivors #BorderlinePersonalityDisorder #ComplexPosttraumaticStressDisorder #ChronicPain #ComplexRegionalPainSyndrome #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue #ChronicFatigueSyndrome #PTSD #Trauma #PostTraumaticStressDisorder #AlopeciaAreata #AutoimmuneThyroidDisease #CrohnsDisease #AdrenalInsufficiency #AutonomicDysfunction #Cancers #LymeDisease #Migraine #ParkinsonsDisease #MultipleSclerosis #RareDisease #ADHD #BipolarDepression #AnorexiaNervosa #EatingDisorders #PosturalOrthostaticTachycardiaSyndrome #POTS #AutismSpectrumDisorder #AspergersSyndrome #Addiction #CerebralPalsy #RheumatoidArthritis #Arthritis #Disability #AddisonsDisease #ChronicIllness #CysticFibrosis #DownSyndrome #Epilepsy #MyCondition #musictherapy #Music #Songs #MightyMusic #IfYouFeelHopeless #WarmWishes #Agoraphobia #SocialAnxiety

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Diagnosed??? Yes and No

My PCP and I have been doing this dance since July.

My daughter was diagnosed in September with hEDS. POTS. MCAS. She previously was Fibromyalgia. MN/CFS.

I finally got my doctor to dig further into my medical record and see for herself just how many symptoms I’ve had for years. Most were distressing enough to require treatment. I am on enough medications to open my own pharmacy.

She then started educating herself about Autoimmune disorders. Last month she gave me a head to toe examination. She had a checklist that we went over and she said I have:
hEDS. Already had POTS. MCAS. Autonomic Dysfunction.
possible Sjogrens already dc CFS and Fibromyalgia

So I was diagnosed ……,. But I wasn’t ……because she doesn’t want to put it in my medical records before I see.
a specialist/specialists for second opinion. She is a little uncomfortable because she isn’t knowledgeable about the disorders. I can respect that. Problem is there isn’t a specialist in the state that is both familiar and taking new patients. I am in a weird state of mind…..

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