Autonomic Dysfunction

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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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Redefining Your Narrative - Motivation, Empowerment, and a Pep Talk from my heart.

Brene Brown, PhD was one of my first and most impactful teachers at the start of my healing journey and wow, did she get me so far because she is an Emotions Researcher —- she spent the past two decades studying Courage, Vulnerability, Shame, and Empathy.

I can’t recommend her enough to also empower you on your healing, growth, and evolving journey to wellbeing and moving you towards your full potential to the best version of your authentic self.

You can watch her videos on YouTube and you can find her transformative best-selling books, videos, and articles, and even resources like workbooks on her website Brené Brown

What I want to emphasize here is that you should never feel alone in your journey because there are so many thought leaders and experts in whatever it is you are struggling with or with what you want to get better at that have already walked the same path and figured out this complex, but not yours alone - human experience. Seek them out - Google them, search for them on YouTube— keep looking out for my posts and my conversations threads and replies to others where I keep giving out these free resources for all of what we need to better understand to thrive. You can always ask me too, and I will be happy to do what I can to help find the expert who can help you with Self-Empowerment. There is a very good chance that expert’s name or advice/wisdoms are already in my copious notes in my phone. I am a constant learner about life, emotions, psychology….and I take detailed notes so I have at my fingertips what I will need to thrive and to fill the gaps in my emotional intelligence and self-development—- all of the critical things to thrive in life empowered that many a therapist never shared with me.

I hope that Self-Empowerment becomes your new favorite term too.

And these critical terms that start with the word “Self”: Self-Regulation (includes emotion regulation and our own regulation of our physiology like our breath, and our heart rate); and Self-Awareness, and Self-Acceptance, and Self-Worth, and Self-Esteem, and Self-Love, Self-Compassion, Self-Efficacy, Self-Discipline, Self-Discovery, Self-Respect.
Am I missing any? Each one is of critical importance for all of us to master ourselves.

I never want you to feel alone, not seen, not validated, powerless, flawed, worthless, or any of that stuff because literally, to be very clear - it is b*llsh*t.

Please Don’t let those thoughts have any say to get the best of you, they are just thoughts - which are just mental events on autopilot, they are not facts -they do not hold any meaning unless we give it power and meaning.

Here is one of the very Motivational and Self-Empowerment talks by Brene Brown that I Especially hope that you will embrace to help you not just survive but thrive more through the difficult holidays right here For us not Against us.

“Part of redefining your narrative is deciding what role you want to play in your own story.

Are you the hero who rises against the odds?
Are you the creator who builds something beautiful from the rubble?

Or are you the person who remains stuck letting the past dictate the future?

The choice is yours.
And, it starts with a single decision that I Will Not Let My Pain Define Me.
I Will Let It Refine Me.

Your life is a story and every experience- both good and bad becomes a chapter in that story.

But here is the truth that many of us overlook— you are the author.

You have the power to decide how the story is told; how the events are interpreted; and what meaning you give to the things that happens to you.

Redefining your narrative is not about erasing the past or pretending it didn’t happen.
It’s about choosing to see it through a lens of growth, resilience, and possibility.

Often we get stuck in narratives that no longer serves us.
Perhaps you told yourself that a failure defines your worth; or maybe you adopted a story of victimhood where everything that went wrong is proof that life is unfair.

These narratives can feel real because they are rooted in genuine pain or disappointment, but just because they feel real doesn’t mean they have to remain the dominant story of your life.

Redefining your narrative starts with awareness. Ask yourself what story have I been telling about myself in my life. Is it a story of defeat, scarcity, or limitation?

Is it a story where someone else’s actions hold all of the power?

Once you identify the narrative that you have been carrying, you can begin to rewrite it.

*One of the most transformative ways to redefine your narrative is to shift your perspective on hardship.*

*Instead of viewing challenges as evidence of your inadequacy, consider them as chapters of growth.*

What did you learn from that relationship that didn’t work out?

What strength did you develop from that setback?

What doors opened after the one you wanted closed?

*When you redefine your narrative, you take ownership of your story.*

*This doesn’t mean ignoring the pain, or pretending everything was okay, it means looking at the past with compassion and choosing to see yourself not as a victim but as a survivor, a learner, and a person who is continually evolving.*

*It’s also important to remember that your narrative isn’t just shaped by what happens to you; it’s shaped by the meaning you assign to those events.*

Two people can go through similar experiences and come out with entirely different stories.

*One may see rejection as proof they’re not enough, while the other sees it as redirection towards something better — which meaning will you choose?*

With warm wishes,

You friend in this hard thing called life,

Dawn 🤗

#MentalHealth #MightyTogether #Mindfulness #CheerMeOn #CheckInWithMe #DistractMe #WarmWishes #IfYouFeelHopeless #Suicide #Selfharm #SuicidalIdeation #SuicidalThoughts #SuicideAttemptSurvivors #ChronicIllness #GeneralizedAnxietyDisorder #Agoraphobia #Anxiety #Depression #MajorDepressiveDisorder #PersistentDepressiveDisorder #MoodDisorders #SocialAnxiety #Addiction #Disability #ComplexPosttraumaticStressDisorder #PTSDSupportAndRecovery #PostTraumaticStressDisorder #BorderlinePersonalityDisorder #BipolarDepression #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #AnorexiaNervosa #ADHD #Relationships #FamilyAndFriends #CerebralPalsy #AutismSpectrumDisorder #AspergersSyndrome #RareDisease #AlopeciaAreata #Cancers #ChronicFatigue #ChronicFatigueSyndrome #MyCondition #MultipleSclerosis #AutonomicDysfunction #PTSD #Cancer #ParkinsonsDisease #Migraine #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #POTS #CrohnsDisease #RheumatoidArthritis #Caregiving

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It’s been awhile

Needless to say nothings really changed for the better . Not necessarily the worst either.

I started embrel for my arthritis and I’m really not sure how I feel about it but I really don’t want to get back on prednisone . Equally aren’t the greatest. “Do the pros out way the cons . “

Therapy has been going good it’s kinda nice just to be able to talk to someone who’s not only studied it but lived with trauma as well and acts on her own suggestions for herself. Example: breathing exercises, does it on perineal tone / with clients to help / and recommends it .

Personal life feel like a rock stuck on the side of a river . Watching as life goes by .

Medical sometime I feel stronger most the time I feel weaker . Some days are better than others but over all auto pilot and suck. Between one condition flaring up another etc etc .

I’m having a hard time taking my medicine . It’s just like my brain is like “NO”. Squirrel and I get side tracked and don’t remember to do it . Even logging medical symptoms is tedious and just don’t have the will.

I’ve missed you old friends
#MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #Depression #Anxiety #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis

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