Autonomic Dysfunction

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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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Leaning on knowing my Resilience -Personal Example

Yesterday to this morning for me is another example of why I am so thankful every day that I took the University of Pennsylvania’s online course on learning and applying resilience skills, so grateful that I typed up every single word that was taught, and that I recently started this group to share this critical knowledge from the actual people that researched this.

U. of Penn’s definition of Resilience is not only the ability to bounce back from adversity, but also the ability to grow from challenges.

In this course, Dr. Karen Reivich focuses on the psychosocial aspects of resilience. The aspects of resilience that are determined by your psychology, and by your social relationships and interactions.

So, yesterday was one of the rare days within recent years that 1) my fatigue completely took hold of me, and 2) my brain’s sleepiness was to the point that most of my brain would not wake up - all day- and I could see myself not able to function practically at all.

It’s not like this was the first time this ever occurred, and it’s always a possibility, but it is still very hard to watch myself go through this and it is also very hard to wake up from the next morning—the kind of “slap in the face” reminder that oh yeah, I live with a chronic illness that can at times, and I will never know when, will have me almost completely disabled.

So, this morning I woke up with this “setback.” And I look at it like I was brought to a “fork in the road.” And now while yesterday’s adversity was not in my control, this morning, which I always work to look at as a fresh, new day full of good possibilities, it was actually now in my control as to which way I let myself go in my mind at this “fork in the road.”

Of course upon waking up, my mind started on autopilot and took me the wrong direction. Then, the moments that I made myself ready for, the clarity, the practice of never staying in autopilot and moving forward on purpose, with intention, with as much control as I can have and before it gets too hard to get the control back.

I turned my brain’s thinking around, I put my focus on the truths that were on my side- including but not limited to the fact that I Have Bounced Back From Much Worse Than This…;and I turned my mind away from dangerous cognitive distortions and right then and there pretty fast I would not let the negativity bring me downward.

Yesterday, I still had the mindful awareness to apply radical acceptance, non-judging, patience, trust, and just letting be with what is — for this one day -these are part of the 9 Attitudes of Mindfulness that I have begun to write posts about here for you. These all link together with the skills of resilience.

What you will learn too here, amongst other important things is that -it is when we start paying attention to our inner experience, that we rapidly discover that there are certain thoughts and feelings and situations that our mind seems to want to hold on to.

And amongst other what are called “resilience interventions” that I applied were these skills that I committed to in living with intention- what are called “protective factors” that I nurture every single day so they will be there for me when I need them most, when I have to dig deeper from a wider range of resources —

I learned the Critical Skill of Optimism —which gives us the attitude to continue to persist —and I learned how Optimism is the most important factor in resilience and in all of life - well-being and strong relationships;
I commit myself to living for clarified purposes that are bigger than myself, this is not limited to relationships, it is even better for our wellbeing to have an attachment to something larger than yourself which might also be to a mission, to a purpose, to an idea, something that you believe is critically important and worth fighting for (by the way, my personal mission is that all of you are worth fighting for);
I learned what my Personality/Character Strengths are and I learned how to leverage them;
I Developed Mental Agility;
I learned how to create a “buffer of positivity”, and what is called the “Broaden And Build” theory of positive emotions;
I learned how to take control of “thinking traps” by applying “cognitive strategies”…

All of these are what is so effective about the newest branch of psychology that I approach my life by to overcome all that I do overcome— where in addition to everything else, we build strengths supports.

Positivity Psychology, a somewhat newer term, describes a dual approach to mental health- where we build strengths supports, and healthy lifestyles, as well as treating illness and distress.

AlI of this is all what I will keep breaking down into chunks in most of my posts here to this group.
This takes some work first on my part - to keep breaking down the many variables- so bear with me.

#MentalHealth #MajorDepressiveDisorder #ChronicFatigue #ChronicIllness #Disability #ChronicFatigueSyndrome #Depression #Anxiety #MoodDisorders #MotorDisorders #BipolarDepression #BorderlinePersonalityDisorder #AutismSpectrumDisorder #AnorexiaNervosa #EatingDisorders #BipolarDisorder #Selfcare #ADHD #Relationships #FamilyAndFriends #Fibromyalgia #ChronicPain #Cancers #Addiction #Selfharm #SuicidalIdeation #SuicidalThoughts #SuicideAttemptSurvivors #Suicide #ComplexPosttraumaticStressDisorder #PTSD #MyalgicEncephalomyelitis #PostTraumaticStressDisorder #Trauma #RheumatoidArthritis #SocialAnxiety #LearningDisabilities #CrohnsDisease #GeneralizedAnxietyDisorder #PersistentDepressiveDisorder #RecurringMDD #TreatmentresistantDepression #Mindfulness #MDD #TRDSupport #EhlersDanlosSyndrome #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #MultipleSclerosis #LymeDisease #MajorDepression #ClinicalDepression #MotivationMonday #resilience #Grief

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Feeling alone

Where I'm from autonomic dysfunction is very unheard of, and a list of symptoms down played as either anxiety or over dramaticness made me feel distant. I knew something was wrong, and no one listened or even cared. It took my heart rate averaging dangerous levels to finally get help. I feel so distant, especially when explaining this condition to those who don't understand it. I'm kind of mad I had to spend so much time alone because of it. I'm not really sure what to do or say at this point.

#AutonomicDysfunction #Anxiety #lonely

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