I know this month is full of awareness. For me, it represents Dysautonomia Awareness (Autonomic Dysfunction). It affects lots for me such as Orthostatic Hypotension, Hypoglycemia, Gastroparesis, Migraines, temperature dysregulation, Neurogenic Bladder, and much more. Check out the article for more information. www.dysautonomiainternational.org/page.php
#chronicillnesswarrior #patientadvocate
#DysautonomiaAwarenessMonth
It took too long for dx. It took too long for Drs to finally figure me out. Now that I have proper diagnoses after about 20 years it doesn't stop amazing me what a difference it has made in my life to have effective treatments and easier communication with medical professionals.
This month is dysautonomia awareness month. Tomorrow is Mastocytosis and Mast Cell Diseases Awareness Day.
Awareness is so much, both from our self advocacy side of things and Drs awareness of these complex multi systemic conditions so they can properly diagnose and manage them.
Keep fighting y'all. For better treatment, for more quality of life. For a cure. For improvement. For a diagnosis.
For awareness.
#TrickyTrifecta #EDSAwareness #POTS #DysautonomiaAwarenessMonth #MCAS #MastCellDiseaseAwarenessDay
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Dear Dysautonomia fighter,
It's okay to be sick. It's okay to hurt and be angry and sad. It's okay to cancel plans, to miss events you really wanted/needed to attend, and it's okay to care for yourself at the most basic levels. If all you do today is plug in your electric blanket and cozy up with a nice podcast about black hole physics, then I'm proud of you.
I know you're pissed beyond belief. You feel lesser, you wish more than anything you could just experience and DO life like healthy people. You hate yourself for existing, you miss your younger (healthier) body, and you wish you could just have one single dammed day of pain relief. Your heart shatters each second for so much loss, so much agony.
But this is how it is. And today sucks. Fuck today.
Keep going, your life is hell but your life is precious.
Love,
Experienced Dysautonomia Warrior #DysautonomiaAwarenessMonth #Dysautonomia #InvisibleIllness #ChronicPain #youarenotalone
I am in charge of the education display for the N.C. Dysautonomia convention this fall. I was wondering if y'all had any good sources I can read/watch about Dysautonomia and chronic illness life. (Hoping to put together something truly spectacular and helpful. If you are interested in helping out, I know I and the chronic illness community would appreciate it! Writing is particularly needed, but whatever help comes is welcomed. Thank you for your time! #DysautonomiaAwarenessMonth #Dysautonomia #POTS #potssyndrome #ChronicIllness #Awareness #Books #writer #Writing #Spoonie #Spoonies
I'm just so happy right now- I recently fainted pretty dramatically with convulsions in front of people close to me, had a difficult time regaining/staying consious and had to be taken in an ambulance...
I thought that was about to happen again, felt my sugar was low as well which would complicate things more.
I had a pickle (salt) a honey stick( short acting carb) and some old stale plain cereal (long acting carb) and drank some water and some nuun and got out of it!!!
#Hope #Stronger #YesICan #IWonThatBattle #warrior
Sometimes I wish my teachers and friends could see how bad it gets. Maybe I don’t. Maybe they would see me differently. Maybe they would see how much it takes for me to get up in the morning. Maybe they could see how much pain I deal with on a daily basis. How my smiles cover up the hurt. How I try my hardest not to flinch in pain. How I wish I could just curl up in a ball and cry. How much I want to tell them the truth but fear their reaction.
I would never wish this on anyone because I know how hard it can be and how hard it is to deal with it. But sometimes I wish they could see... #Dysautonomia #LivingWithPOTS #episodes #Epilepsy #DysautonomiaAwarenessMonth #PosturalOrthostaticTachycardiaSyndrome
I asked my friends to wear turquoise today as well as wear a ribbon I made. The whole band is wearing one today as well as some teachers and staff. It makes me so happy that all these people( especially my band fam) would wear this in support of my fight with Dysautonomia/POTS. #LivingWithPOTS #Dysautonomia #DysautonomiaAwarenessMonth
Adding salt to already salty foods because you don’t feel like it has enough salt #POTS #PosturalOrthostaticTachycardiaSyndrome #Potsie #Dysautonomia #DysautonomiaAwarenessMonth
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