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A question on my mind

Anyone with #PosturalOrthostaticTachycardiaSyndrome have any safe decongestant meds they can take? I’m struggling with a sinus infection and the urgent care doc told me to take an allergy med and some mucinex for the congestion. I asked my pharmacist and she told me it’s not the best idea with my meds and conditions to take any of them bc they all raise the heart rate and allergy meds drop my blood pressure into the ground. Any suggestions?
#POTS #ChronicIllness #Dysautonomia

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Too many to list...

My body is a contradiction, constantly. Hypermobile yet stiff as a board at times. When my vision goes out I rely on my peripherals to see and and ambulate. SFN. I will have intense nerve pain in my upper arms that will cause my wrists to loose feeling (everything else is fine), arms must remain at least 90° and proximal to my waist, it also limits my strength and duration. Fight or flight can 💋my🍑. Don't get me started with the gut and stomach fun. 😆
It's one thing having 1 or 2 of the conditions but then start adding the others and mixing them in completely different playing fields with totally different dynamics...😥
Dx: Dysautonomia, POTS, SFN, Fibromyalgia, hypothyroidism that reversed, PCOS, ADHD, MDD, PTSD/trauma, anxiety, more

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Pass it on by Melanie R.

Pass it on by Melanie R.

Pass it on;
passing the time…
The past is behind,
and time has passed on.
From passages,
past ages,…
all has come to pass.

Not to pass life away,
or have life pass passing the time;
preventing the passing,…
but past to pass.

For Life and time has proven it wasn’t meant to stay, but had to pass on sacrificially for new life to begin.
Pass the test of past, present, and future.
Let go and allow God to pass you through.
The past, has passed, and it was time to let go.
Pass it on.

Get passed it, to pass;
and while doing so,
pass on the passages of wisdom, knowledge, and understanding of truth passed onto you.
Pass it out,…Pass it on.
The cross as the compass in our hearts guiding the way on the map to the righteous road.
A passionate paragon, piously passed,
past depths of spiritual resonance;
a passing of death to life…
Pass it on.

Phillipians 3:13-14
Brothers and sisters, I do not consider myself yet to have taken hold of it; But one thing I do: Forgetting what is behind, and straining toward what is ahead, I press on toward the goal to win the prize for which God has call me heavenward in Christ Jesus.

2 Timothy 2:2:
And the things you have heard Me say in the presence of many witnesses entrust to reliable people who will also be qualified to teach others.

Paul reminds us of the importance of sharing our faith, and Godly knowledge with others. Whether through mentorship, sharing your story/testimony of your affliction, or simply living as an example of God’s power, love, and wisdom. In this time we are given, pass it on!

#ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #MitochondrialDisease #IrritableBowelSyndromeIBS #POTS #Dysautonomia #HypothyroidismUnderactiveThyroidDisease

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Autism and Borderline Personality Disorder….. the misery experienced by loved ones is immense.

Living with my chronically ill, autistic, BPD, young adult daughter is like living with an abusive spouse ( I would know cause I lived with one for 16 years before divorcing him). I can’t kick her out cause she isn’t totally capable of living on her own and doesn’t have much income and I don’t have any family that she could go live with. She doesn’t drive either so is totally dependent on me to get her to her part time job and frequent doctor appointments. However I am chronically ill too with several difficult conditions and work full time and care for my youngest daughter that is totally disabled from her chronic illnesses and it is just too much to always deal with the continual cycle of ups and downs she goes through due to her mental and developmental diagnoses. She is on medication that is helping some to stabilize her moods and help her severe anxiety, but she still goes into really awful episodes where her thinking is all over the place and she lashes out verbally and accuses me of things that don’t even make sense. She yells and cussed at me, calls me names and says I’m stupid and don’t really love her. She does the same to her sister but on a lesser scale than with me. In those episodes I can’t reason with her and she is determined that I’m causing her problems. When she is clear headed she can be kind and loving, but she always has another episode before long that is horrible for me to deal with. I feel I’m being verbally and emotionally abused just like I was from my ex- husband. I want a peaceful life and I just can’t seem to ever achieve it due to the whole situation. Has anyone else had experience with this kind of thing? I would really appreciate input. #Fibromyalgia #AutismSpectrumDisorder #BorderlinePersonalityDisorder #chronicmigraine #ADHD #Anxiety #Depression #ChronicFatigueSyndrome #Dysautonomia #UlcerativeColitis #EoE #OCD #DisorderedEating #InterstitialCystitis #Endometriosis #IBS #FoodAllergies

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what if right now you're okay and for this moment, everything is okay?"

was listening to a podcast this morning 🎧and they mentioned something along the lines of (this is totally reworded as i already forget) "what is everything right now is okay?" or "what if right now you're okay and for this moment, everything is okay?" ☁️i found this to be super comforting. i know it can sound a little woo woo and like logical mind comes and says "it's not though" or "so many things are not figured out or are not okay right now" or "you have so many things to do that are stressful!" but what about just like for the moment - cant everything maybe be okay? ☁️meditation hasnt been my calling - and being in my body in that sense, as sometimes being "in my body" makes me very aware of my fast heart beat or exhaustion or *too* focused on my breathing so i start feeling like i can't breathe (haha) -- or even triggers that air hunger sensation because with dysautonomia, breathing isn't always so easy to regulate! but for me, painting, doodling, drawing - all of these are my form of meditation and taking mind/body breaks. ☁️☁️this was a big circle i promise it relates! i think that it can be kind of calming and meditative to just think "It's okay right now." a this teensy tiny moment in time. or this big moment in time - whichever resonates. and maybe when hard things come, "i'll figure this out" or "i'm okay for now, i'll figure out tomorrow when it's tomorrow" and even when not feeling okay, maybe just telling your body that it's safe - it is okay, and you are there rooting for it? ☁️☁️just pondering - would love to know what you think about this sort of focus on the now, but really just reassuring yourself that "you got this!" ? and also holding space for the moments when it's not okay right now, and when this isnt what you need in the moment to support yourself. i think there's a time & place & moment for anything and everything - so do whatever brings you the most peace, comfort, or strength ☁️🌵✨

#Dysautonomia #ChronicFatigue #encouragement #MastCellActivationDisorder #Spoonie #Hope

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I’m new here!

Hi, my name is ApproachableCorgi74. I've been diagnosed with more things than I ever expected, and I’m going to be getting even more diagnoses. I’m doing my best to cope and learn how to live with it all

#MightyTogether #BorderlinePersonalityDisorder #BipolarDisorder #PTSD #OCD #Schizophrenia #Depression #Anxiety #Dysautonomia

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Mercy New by Melanie R.

Mercy New by Melanie R.

As You wake me in the night,
to speak to me as I write,

brightness covers darkness,
Lord, we thank You for your light.

Each morning
mercy new,
the dawning break of day.

The bread was broken for us,
to restore Your Mighty Way!

Your returning day approaches,
guidance needed most-

Your light has seen us through it,
Our lampstand; Heavenly Host.

A lighted path before us;
Not lost,
You led the way.

Opened eyes;
burning bright…
we praise Your Holy Name.

Father in Heaven,
The light that guides and shows us the way. Thank you for kindling Your Light of purity and allowing Your divine burning light to be seen. Seen to light the way of our path, to shine our testimony in the midst of great heavy darkness the way The Light of Christ anointed our faith.
One spark lights an entire room. Your mercy is fresh and new each morning as The Light of The World. The Great and Mighty Lampstand of constant presence shining before this world! Your light shines above the darkest shadows and empowers us to have the strength to overcome, as you have overcome every work of darkness! Praise God! Your Holy Light pours wisdom and chases darkness out. Heaven let your light shine down on us! We thank you for bringing mercy, life, and light in each dawn of day.
In Jesus’ glorious name,

Psalm 106:1
Praise The Lord! O give thanks for He is good! For His mercy endures forever.

1 Peter 2:10
Once you were not a people, but you are now the people of God,… which had had not obtained mercy, but now have obtained mercy.

The Way, The Truth, and Life!
Shine your light! Give Light!

#RareDisease #sjogrens #MitochondrialDisease #PrimaryImmunodeficiency #ChronicIllness #HypothyroidismUnderactiveThyroidDisease #PosturalOrthostaticTachycardiaSyndrome #ChronicInflammatoryDemyelinatingPolyneuropathy #Dysautonomia #InsideTheMighty #ChronicPain #RheumatoidArthritis

17 reactions 3 comments

I'm new here!

People's Advocates for Total Health works to provide advocacy and connections to better health in communities across the United States. Our original focus was Ehlers Danlos Syndrome, but we now support doctors, coaches, advocates, and educators in supporting invisible and chronic illnesses in every way possible. Right now we are spearheading a fundraiser to provide 300 families with genetic testing for EDS. To donate or find out more, reach out or go to www.path2betterhealth.org. #MightyTogether #Dysautonomia #Dysphagia #EhlersDanlosSociety #EhlersDanlosSyndrome #chron #PolycysticOvarySyndromePCOS #InflammatoryBowelDiseaseIBD #Infertility #LymphomaNonHodgkin


Need to vent real quick

Been dealing with the summer heat a lot lately since here in Bama it’s over 100° daily now. My BP loves to drop real low during my summer flares and I’ve had to leave work early twice, due to a BP of 89/57. I work in an ER and on my way out, a coworker RN said to me that I look fine just run around a little.
I am completely fine with joking around with people but when it comes to something I am in denial about like having POTS which can be debilitating at times, it really just annoys me and makes it harder to get out of this denial state. #POTS #Dysautonomia