Shelley

It’s so hard to feel medically burned out and have to continue seeking medical care.

Been snowing almost non-stop in Redmond/Kirkland (top of North Rose Hill area) all day! Pic of 3 inches top of outdoor table 9:20am. Not much more accumulation, but going strong & temps going down now. Wild but pretty March 13th! #wawx #SeattleSnow @NWSSeattle @CityOfRedmond

@PhoebeLanei4 WOW! Still have power at 450 ft elevation in Redmond-Kirkland area…flickered a bunch Wednesday night…🤞 Hope yours returns soon!

Out of nowhere we got this big March snow in Seattle… made it through the crazy wind on Wednesday night, and then boom — the power still went out on Friday anyway.

Anxiety isn't always panic attacks. Sometimes it's: Overthinking every text. Replaying conversations for hours. Feeling like something's wrong, even when it's not. Needing reassurance but feeling annoying for asking. It's exhausting & invisible.

@recovery_your EXACTLY

When you’re first diagnosed with chronic illness you do a ton of explaining. You explain the symptoms. The cancellations. The flares. Why you’re tired again. You try to make it make sense. But after enough misunderstandings, enough “you seem fine” responses, you realize the explaining isn’t changing anyone’s way of thinking. So eventually, you stop explaining yourself and conserve that energy instead.

@ThePOTSPostman With the exception of a few truly empathetic people in my life, this couldn’t ring more true….

Everyone repeat after me: complex and post viral illnesses are NOT caused by wrong thinking or attitudes, and thus cannot be cured by right thinking or attitudes. These are NEUROIMMUNE (and often autoimmune) diseases, with real pathology, requiring real medical treatment!

@recovery_your 💟☮️💟 to you

Struggling quietly is exhausting. So here’s me being honest: I’ve been finding things really fucking hard recently. If you’re reading this, a kind word or a “hello” would mean the world.

@DiaryofaSickGrl Depending on who asks, usually some form of “I’m still here”, “another day another diagnosis”, “living the dream”, or something slightly more benign… I do NOT ever answer “fine, how about you” or “good…” etc… Some version of honesty…always.

How do you typically answer the question “how are you doing?”

Chronic illnesses aren’t all that rare. But them being diagnosed and believed is.

For anyone who doesn’t get the Bad Bunny thing, let me just put this here. I’ve never wanted to be a Grammy statuette so bad in my life.

@DiaryofaSickGrl And more isolating than most anyone w/o chronic illness could imagine. ☮️💟☮️

Being chronically ill and unable to work is not a vacation. It’s torture.

Bruce Springsteen sang his newly released song, “The Streets of Minneapolis” in a surprise appearance at a benefit show in Minneapolis Friday, to raise money for the families of Alex Pretti and Renee Good, who were fatally shot by federal immigration officers earlier this month. “This is for the people of Minneapolis, people of Minnesota and people of our good country of the United States of America,” Springsteen said during his opening.

One of the most powerful things I’ve heard. #BruceSpringsteen’s #StreetsOfMinneapolis song will forever document this tragic time in U.S. history. Music resonates in so many ways.

⚠️IF YOU HAVE ANY IMPLANTS—Trump/RFK Jr have laid off the entire FDA Comms office—if you/your family have any medical devices in your body like pacemakers, breast, hip/knee, or brain/ear implants—THERE IS NOBODY TO HELP YOU IF ANY RECALLS / TOXIC ISSUES.

If someone with a chronic illness leaves a holiday gathering early, please don’t ask them to explain why. And please don’t guilt them into staying. Leaving early usually means they noticed warning signs or can no longer handle the situation. It means they’re trying to prevent a crash. It means they’re trying to protect the days that are to follow. The kind thing to do is to let them leave without any pressure.

@D_Bone Relate to SO much of it. Though ‘fortunately’ after years of being told alls fine, wearing a heart monitor for a week picked up Atrial Tachycardia that directly aligned to my pressing the “event”button - #nevergiveup

@arianek Interesting. Thank you for sharing. I suffer from many allergies and autoimmune - including #Sjogrens - I haven’t had testing that included those specific genes (that I’m aware of). Just asked for more gene testing and new Dr. said it wouldn’t be of any further benefit…

Relevant info in my case, from this very informative Wikipedia page on HLA DQ2 genes, this is re: HLA DQ2.5 which I have a pair of (aka. homozygous), which is the worst combo for likelihood of developing these diseases (👀 #Sjogrens as well as Celiac and neuroimmune disease): “DQ2.5 and the linked DR3 are associated with probably the greatest frequency of autoimmune occurrence relative to any other haplotypes. The haplotype is positively associated with coeliac disease, dermatitis herpetiformis, juvenile diabetes, Lambert–Eaton myasthenic syndrome (LEMS), Sjögren syndrome, and autoimmune hepatitis (although significant proportion of the risk is secondary to coeliac disease). DR3 and/or DQ2.5 are linked to the following diseases: Moreen's ulceration,[3] "bout onset" multiple sclerosis,[4] Graves' disease[5] and systemic lupus erythematosus.[6]” en.wikipedia.org/wiki/HLA-DQ2 cc/ @NeuroSjogrens @agutheragu @SarahSchaferMD

Every #Care4Complex patient should read this and request haplotype testing. In BC I had it run almost 15 years ago to see if I had the Celiac genes, to help decide whether to do a formal gluten challenge for testing after already having been gluten free for a decade. Spoiler: I was positive. (Rest of my HLA story, and a new development last week below, and I’ll go find another link about this to add in one sec…)