Dysautonomia;

Dysautonomia is a medical condition that affects the Autonomic Nervous System, which is responsible for regulating the automatic functions of the body, such as heart rate, blood pressure, digestion, kidney function, and more. People with dysautonomia may experience difficulty in controlling these systems, leading to symptoms like lightheadedness, fainting, abnormal heart rates, and unstable blood pressure. Dysautonomia can manifest in different forms.

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects an estimated 1 out of 100 teenagers, and including adult patients, it impacts a total of 1,00,000 to 3,000,000 Americans. POTS can cause various symptoms such as lightheadedness, fainting, rapid heartbeat, chest pains, shortness of breath, upset stomach, shaking, exercise intolerance, heat intolerance, temperature sensitivity, and more. Although POTS affects women more commonly, men can also get it. Despite appearing healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions such as COPD, congestive heart failure, and kidney disease.

Dysautonomia and POTS can be challenging to treat, and the effectiveness of treatment may vary depending on the expertise of your local medical staff. There are some home remedies that may help alleviate some of the symptoms and triggers associated with these conditions. However, it is important to understand that these remedies may not completely cure Dysautonomia or POTS, and their effectiveness may vary from person to person.

Pots is supposed to be more common than MS or Parkinson’s so why is that some have never heard of it ?

It can take an average of 4-7 years to get proper diagnosis. Because of being misdiagnosed or how most symptoms can be linked to other illnesses. Lots of tests is involved and it just becomes and exhausting time period of wanting answers and fighting to be seen or heard by others.

Pots affects everyone differently so not all pots patients will faint and just because pots is postural doesn’t mean lying down will make symptoms better.

Did you know there are 15 different types of Dysautonomia and all should be taken seriously! No matter how it affects the person it’s a serious illness and it should never be brushed off!! Not only does the illness bring a variety of symptoms but also impacts your life in ways you’d never imagined.

* some of the different types of Dysautonomia 🩵🩵

We shouldn’t have to look sick to get the proper care, treatment and support!

I’m finally comfortable sharing my pots journey and even though I’m nervous and scared about it I can’t wait because while I’m sharing my story I plan to raise awareness on not only pots but als as well. Another illness/disease that impacted my life. I plan to share how much my life has changed since I was diagnosed with pots. I also hope this reaches other chronic illnesses warriors and can show that you can still have a beautiful life even though we have a certain illness.

If you want to know more

intsagram: rebeljennigaines_

TikTok: jennigaines101

February 24th I’ll be participating in my first ever polar plunge and leading up to the big day I plan on sharing my pots journey and how this illness has affected my life! If you have any questions feel free to ask.

🩵🩵🫶🏻💪🏻 no one fights alone!

October is #DysautonomiaAwarenessMonth I wrote "Sometimes I Hate My Body (Dysautonomia Awareness)" mant years ago, when I was struggling with my body umage as a newly diagnosed disabled person. (Don't worry - I now LOVE my body and my life). I've released this song EXCLUSIVELY on @atomicmusicaus to raise awareness for #Dysautonomia. I have 2 kinds of Dysautonomia that effect my life, daily; #NCS and #POTS Please jump on to Atomic and listen to this song, "like", share repost, download and if you're feeling generous, even buy this song to bring #DysautonomiaAwareness Thank you 💖💖 [ID: A teal album cover with black text, reading "Sometimes, I hate my body. Dysautonomia Awareness. Bette Foord" In the top right corner is am awareness ribbon] #Music #Musician #Musicians #MusicianLife #MusiciansLife #MusiciansOfInstagram #Vintage #Retro #OldFashioned  #Singer #Songwriter #SingerSongWriter #Uke #Ukulele #VintageStyleNotVintageValues #MelbourneMusician #ChronicIllness #InvisibleDisabilities #InvisibleIllness https://www.instagram.com/p/CkIJT0sSlKv/?igshid=NGJjMDIxMWI=

Track 23 : Gastroenterology Treatment The 13th World Gastroenterology, IBD & Hepatology Conference happening during December 15-17, 2023 in Dubai, UAE & Online.  is now accepting submissions Submit your paper here: https://gastroenterology.universeconferences.com/submit-abstract Email: [email protected]   WhatsApp No: +442033222718  

#IBD #Gastroconference #gastroforum #gastroconference2023 #hepatologyconference2023 #gastrocongeress #doctor #medicine #colonoscopy #gastroenterologia #ibd #chronicillness #guthealth #gastroparesis #spoonie #invisibleillness #medical #chronicfatigue #ibs #covid #potssyndrome #dysautonomia #pots #dysautonomiaawareness #potsawareness #neurogenicorthostatichypotension

Postural orthostatic tachycardia syndrome (POTS) affects blood flow. It causes the development of symptoms (usually lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat) when standing up, and relieved by sitting or lying back down. https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots #pots #potsie #posturalorthostatictachycardiasyndrome #zebra #spoonie #spoonies #dysautonomia #dysautonomiaawareness #dysautonomiaawarenessmonth https://www.instagram.com/p/CVMFHcyMoB5/?utm_medium=tumblr

1 year ago today, finally getting out of a boot for a ankle instability (thanks #hypermobility ) with a left distal fibula fracture with nonunion of the avulsion fragment. Thanks to pt at I learned how to strengthen my ankles the best I can, and how to use kt tape for added stability. Now a year later those exercises helped me with my weight loss, (I'm 147 now), so I have stable enough ankles to walk down steep inclines and not get hurt. To be able to properly balance on rocks as they move, and gain control over how I get fit, to look better in photos. A year ago I didn't think this was possible but getting a proper diagnosis of #pcos , and a doctor who understood my #dysautonomia here I am, and loosing. #myrtlebeachmodel #southcarolinamodel #pcosweightloss #hypermobilitysyndrome #pots #potsygirl #dysautonomiaawareness #fibromyalgiaawareness #dysautonomiawarrior #fibromyalgiawarrior #invisableillness #pcosawareness #pcosfighter #selfconfidence #bodypositive #loveyourself #weightlossjourney #weightlosstransformation #weightloss #transformation #timehop (at Myrtle Beach, South Carolina) https://www.instagram.com/p/CPJKryhJVaK/?utm_medium=tumblr

YOU DESERVE A SPACE TO FEEL RAGE. 🌿I’ve been trying to write about the rage and despair I’ve been feeling for weeks, but I haven’t been able to find the words. I’m new to anger. For decades, it wasn’t safe for me to be angry, so I’m just now rediscovering the feeling. I can’t quite grasp my rage, but I feel strongly that we need a place to express it. If you’re sick/disabled and pissed as hell, please share your feelings below! I will delete comments that invalidate the feelings of sick and disabled people. 🌿It’s okay to be angry that now when they can see how lonely, how left out we have been, they turn away. To rage now that they’ve shown their hand: they were capable of providing access the entire time. They just didn’t care to, until it affected them. Until it was their lives shoved into boxes and tucked away, until they too couldn’t see friends, until it was their relatable suffering. Not the shame of illness, but the virtue of preventative wellness. 🌿I think my feelings boil down to being left behind. To having able people come so close to understanding how small and lonely our lives have been, and choose to look away. To have our governments declare they are prioritizing the vulnerable, and then ignore sick, disabled, and elderly people. To be reminded that our lives are considered collateral damage. I don’t know how to live with this, but I know step one is talking about it with our communities. 🌿#ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife 🌿ID: A solid orange background with a pink and purple watercolour splotch in the center. Over the splotch is the text, “You deserve a space to feel rage” in small caps. (at Toronto, Ontario) https://www.instagram.com/p/B-mvCScj7iu/?igshid=1fjhehitx4cxl

Posting this paper as my journey on getting a diagnosis, starting with neurogenic orthostatic hypotension as the key symptom.

Hardly got any sleep last night. I just got to get through 5 hours of work in a little bit, then I can relax. My stomach is still a little bloated and I feel so uncomfortable. I definitely won't be eating breakfast.. I hate working like this, and I've only called out twice before for gp flareups, and I've brought doctors notes to cover my ass, but they never even counted them. Its ridiculous, the fact that Dysautonomia and Gastroparesis isnt looked at at a "valid reason" to call out of work when you absolutely can't come in. There needs to be more awareness.

Inktober Day 18: Bottle #inktober #inktober2018 #inktoberday18 #inkdrawing #POTS #POTSie #invisibleillness #dysautonomiaawareness #shinealightondysautonomia https://www.instagram.com/p/Bpn0osxAscT/?utm_source=ig_tumblr_share&igshid=1jlu1tdexqbdm

The illness that takes control away from your unconscious bodies abilities. Family and friends need to be more informed of our existence with this and many other invisible illnesses. #chronicillness #invisibleillness #advocate #WARRIOR #dysautonomia #dysautonomiaawareness https://www.instagram.com/p/BojF6Q-Hl2s/?utm_source=ig_tumblr_share&igshid=1x1eefobj36z3

Music City Polar Plunge!

February 24,2024

500 people came out to participate in the pluge which led to a break in records for Special Olympics Tennessee!❤️❤️❤️

Being able to participate in a polar plunge has always been on my bucket list just never thought I could due to my chronic illness POTS and knowing that I was able to cross it off just gives me the confidence to get through life.

It was a beautiful day to change lives

🩵🩵🩵🩵🩵🩵🩵🩵🩵🩵🩵🩵🩵🩵🩵

=================================

I waited for a few months for this day and ended up being way better than expected. I'm amazed at how many people came out, to plunge and even cheered on us plungers. I've never witnessed anything like it before! They don't call Tennessee “The Volunteer State” for nothing y'all! 500 people came out to The Nissan Stadium and plunged and the parking lot was filled with a crowd, a chili cook-off, a couple of radio stations, and even the news station there, I saw quite a few people up on the Pedestrian Bridge! It was truly incredible and a day I'll never not want to talk about.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In the wise words of La Knight “Let me Talk to ya! YEAH!!”

I now have another great event I can look forward to while living here in Tennessee! If you suffer from joint pain or even mental health, swelling Etc. I would suggest One cold plunge a month! & let me know if you notice a difference

We originally had planned on watching the other plunges after we were done, but thanks to POTS sometimes day-to-day plans can be changed. I'm not sure what else to really say other than looking forward to next years!

———————————————————————

Some important things to know if you decide to plunge.

Check-in doesn't start till 10:30ish, followed by a chili cook-off and beer garden opening at 11 then kicking off the Polar Plunge with award ceremony and plunges!

Plungers meet behind the little stage and line up. Once in line, you'll be asked for your Team name, your captain's team name, an intro song, and the reason why you are plunging. I was a little bummed that the announcer didn't do that this year but probably because of how many people were there.

You get a nice little 3.2.1. Countdown and that's it! The water was 50 degrees while the outside temperature was 48 with some wind. It wasn't as bad as I thought it would be, I strongly recommend wearing socks if you don't want to get that initial shock reaction, they also help you to not slip or slide when coming up after jumping in. While it wasn't as cold as I expected the cold water did turn my hands red and lost feeling and circulation in both, meanwhile my mom still had feeling in her hands they were just cold. Just goes to show how different things can be for someline like me! 🩵💪🏻

I've been having a really bad flare up of my #dysautonomia and #fibromyalgia, recently BUT I'm in bed, today, with a heatbag (pink, of course) and am enjoying @musicproductionforwomen 's Tech course on #MusicProduction and a career in music - I'm so thankful for @creative_vic for creating these #accessible events - especially during #DysautonomiaAwarenessMonth where I'm not well enough to make it to an event during a flare (and don't really want to, now that covid rules have been thrown out the window & the vulnerable are more at risk than ever) #WomenInMusic #accessibility #DisabledMusicians #disability #DysautonomiaAwareness #Spoonie #Music #MelbourneMusic #CreativeVic [ID: Bette has her pink hair in a messy poodle hairstyle and is curled up in a grey floral blanket, sleeping] (at Melbourne, Victoria, Australia) https://www.instagram.com/p/CjtjeTJBmTv/?igshid=NGJjMDIxMWI=

#callfordelegate The CME/CPD/ accredited 13th World Gastroenterology, IBD & Hepatology Conference happening during December 15-17, 2023 in Dubai, UAE & Online. To examine the most recent research & trends, it brings inspirational speakers and insider perspectives. https://gastroenterology.universeconferences.com/registration/ Email: [email protected]   WhatsApp No: +442033222718  

#IBD #Gastroconference #gastroforum #gastroconference2023 #hepatologyconference2023 #gastrocongeress #doctor #medicine #colonoscopy #gastroenterologia #ibd #chronicillness #guthealth #gastroparesis #spoonie #invisibleillness #medical #chronicfatigue #ibs #covid #potssyndrome #dysautonomia #pots #dysautonomiaawareness #potsawareness #neurogenicorthostatichypotension

I’m having a lot of feelings these days… To name a few, I’m feeling: . disconnected. . burnt tf out. . overwhelmed. . I’m noticing it in the tension of my shoulders and jaw. I know it’s the culprit causing racing thoughts and making sleep difficult. . I’m challenging the physical reactions with deep breathing, and affirmations. Taking mindfulness moments. Reminding my body that’s it’s safe and cared for. . My mind is a bit more difficult to convince, but my goal is progress, not perfection. Allowing gentleness and grace when I realize my mind wandering towards negativity. . Where do you feel your emotions in your body? • • • Here come the hashtags! #chronicillness #chronicpain #disabledandcute #disabledartist #disabledblogger #mindfulness #babewithamobilityaid #dysautonomia #pots #heds #spoonie #babewithamobilityaid #dysautonomiaawareness #invisibleillness *chronicallyill #chronicillnesswarrior #chronicillnessawareness #ehlersdanlos #dysautonomia #pots #posturalorthostatictachycardia #spoonie #gastritis #spirituality #autoimmunedisease #autoimmune #invisibleillness #ptsd #butyoudontlooksick #holistichealth #recovery #disabilityadvocate #infusion #affirmationsoftheday https://www.instagram.com/p/CY7ZBF7PKC9/?utm_medium=tumblr

Apparently October is dysautonomia awareness month. Pretty apt since I can’t get to class today cause when I stand up my palpitations (and pain levels) are too bad to get anywhere 🙃 . . . [ID: Caodhan from the chest up, looking off to one side. He’s sitting in front of a pine bed head with potion bottle fairy lights and wearing a blue woollen jumper.] . . . #dysautonomia #dysautonomiaawareness #pots #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #eds #hypermobilitysyndrome #cripplepunk #disabled #palpitations (at Southampton) https://www.instagram.com/p/Bo9GMEinSmH/?utm_source=ig_tumblr_share&igshid=2i1bjkp5ha2s

MY NAME IS KAIA. You used to know me as Kat! I’m so relieved and very very happy to be able to say that my name is now legally Kaia Mayari Arrow. EEEEEEEEEEEEEE!!! ⠀ ⠀ Kaia means stone, willow, and sea. “Kaya” in Tagalog means “to be able to.” Mayari is the Pampangan goddess of the moon, equal rule, and revolution. ⠀ ⠀ ID: A desaturated photo of Kaia and Bunny behind a text banner reading, “EEEEEEEE! MY NAME IS KAIA. A very special announcement!” Kaia is laughing and holding up Bunny in front of a patch of tall grass. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME #POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminist #biopolitics #sick #illness #spoonie #SpoonieLife (at Toronto, Ontario) https://www.instagram.com/p/CHtGSEUjc88/?igshid=6lzpuettmfc