autoaylie

navigating a new normal in an autoimmune world | voicing my views | #sickbutstillsassy

[autoaylie @autoaylie]

#LupusAwarenessMonth

[Lupus Association @LADAOrg]

#Fatigue is the most prevalent and incapacitating symptom experienced by about 85 to 92% of people with #lupus, resulting in decreased physical and mental function, and 50% of patients rated it as the most disabling symptom. #LupusAwarenessMonth #LupusAwareness

[autoaylie @autoaylie]

@waltz_tales Hi @waltz_tales! How about playing words with friends or online scrabble or online yahtzee. Not necessarily as a means of meeting new people but definitely a new type of online engagement.

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

‼️ This needed to be stated on record: autonomic dysfunction (aka #dysautonomia) is a key feature of h #EDS and other complex disorders with chronic fatigue. ‼️
https://t.co/RRdpnBfjkY

[autoaylie @autoaylie]

Many of us have been traumatized by bad doctor appointments so I put together some "tips" that have helped me on my medical journey over the years. Don't let "medical PTSD" prevent you from finding good care. #sickbutstillsassy #POTS #lupus

https://t.co/zXLT29kPFJ

[autoaylie @autoaylie]

Suffer from GERD? Maybe you're a candidate and you can get some relief. Read about my experience getting the ARMA procedure: https://t.co/jlHOrKwDH2
#sickbutstillsassy

[autoaylie @autoaylie]

Thank you @AutoimmuneAssoc for leading this important initiative today at Capitol Hill! 🙌

[Autoimmune Association @AutoimmuneAssoc]

Autoimmune disease isn’t just a health crisis—it’s a financial and economic one. We can’t afford to ignore autoimmune disease. Join us in pushing for policy change. Send an email to your elected officials to support the HELP Copays Act: https://t.co/T5I7jGnQUg

[autoaylie @autoaylie]

Happening now, today is Day #3 of the free, annual #MigraineWorldSummit. Register at https://t.co/uMKc2LtOU1 if you haven't already. Thank you @MigraineSummit for putting together such an important event! #MigraineAwareness

[autoaylie @autoaylie]

Thank you @AutoimmuneAssoc for all you do! #autoimmuneawarenessmonth

[Autoimmune Association @AutoimmuneAssoc]

Learn how you can help raise awareness and support the autoimmune community: https://t.co/v0jta8fu7d
#autoimmuneawarenessmonth

[Autoimmune Association @AutoimmuneAssoc]

Which condition affects you or someone you love? Share in the comments 👇
Learn how you can help raise awareness and support the autoimmune community: https://t.co/v0jta8g1WL

[autoaylie @autoaylie]

Hi @warriors! I'd like to educate Coach Kerr about #POTS. Some people can lead normal lives while others suffer from debilitating symptoms. #POTS is real. I have lived with it for over a decade. Do not minimize the struggle of living with #POTS. @kporzee @espn

[autoaylie @autoaylie]

magical night for #Chicago sports fans last night...@ChicagoBears won! @chicagobulls won! AND @NHLBlackhawks won! Let's go!

[autoaylie @autoaylie]

#Medicare open enrollment period ends soon. Open enrollment period is especially important for Part D.

Read my piece on #Medicare tips I have learned over the years. https://t.co/pTJsnE7zl8

#Medicare is a maze and really a series of important choices.

[autoaylie @autoaylie]

Thank you @RepJulieJohnson for supporting #Medicare telehealth! Please continue to advocate for its return. This has been a vital source of care for seniors and those with disabilities. It should become a permanent feature of #Medicare. This is about health, not politics.

[Candace D. @DiaryofaSickGrl]

Unfortunately my chronic illnesses don’t give me weekends, holidays, vacations, or birthdays off. In fact, usually these days end up flaring my illnesses if I try to enjoy them.

[autoaylie @autoaylie]

Yes @DrMichaelScoma! But Medical PTSD is often accompanied by insurance PTSD. Be it denial of treatment, going through a disability application process, a billing saga; there is usually multiple and ongoing forms of trauma. Making medical encounters even more damaging.

[Michael R Scoma MD @DrMichaelScoma]

Medical PTSD: when "care" causes lasting damage

For many living with ME/CFS or Long COVID, trauma from medical encounters is not uncommon. Being dismissed, disbelieved, or mismanaged in clinical settings can lead to lasting psychological injury alongside physical illness. 🧵

[autoaylie @autoaylie]

YES @ThePOTSPostman!

[ThePOTSPostman @ThePOTSPostman]

Chronic illness isolates you in ways you can’t really explain.

Not everyone can handle the version of you that’s struggling.

You watch people disappear one by one, from daily check ins, weekly, monthly, then nothing.

When life gets real, most people vanish unfortunately.

[autoaylie @autoaylie]

This fact should be a wake-up call. For some, symptoms can be debilitating. I'm in my 40s and my parents are my caregivers...it should be the other way around. Everyone should know what #POTS is. All doctors should take #POTS seriously. #DysautonomiaAwarenessMonth

[Dysautonomia Intl. @Dysautonomia]

Research shows that quality-of-life in #POTS is worse than quality-of-life in other diseases that are taken much more seriously by medical providers, like cancer & HIV. Help us change that by making a donation at https://t.co/KA1iT8VWGV during #DysautonomiaAwarenessMonth.

[autoaylie @autoaylie]

October is #DysautonomiaAwarenessMonth. I wish people understood that symptoms can vary from mild to debilitating. That there is not one magic fix for #POTS. That we may look "good" on the outside but many of our symptoms are invisible. Thank you @Dysautonomia for all you do!

[Dysautonomia Intl. @Dysautonomia]

Friends & family, we love seeing you get involved in #DysautonomiaAwarenessMonth too! What is one thing about dysautonomia you wish everyone knew?

[autoaylie @autoaylie]

On 10/1/2025, millions on #Medicare lost access to telehealth. Care is at stake. All because politicians do NOT know how to get along. Shame on all sides.

[autoaylie @autoaylie]

Please @SenatorTimScott continue to advocate to extend Telehealth services for #Medicare recipients! This is about health, not politics. Thank you for your work on this important issue!