erica

I don’t wanna deal with Stiff Person Syndrome for the rest of my life… Why don’t I get to die?!? I deserve to rest and be pain free for once! It deserve to be treated with dignity. Instead they keep you alive to suffer.

@HPluckrose That doesn’t mean I should have to help someone who abused me my entire life. I deserve peace for once

Yeah. I worked in nursing homes for many years. Some of the residents with dementia needed up to four carers to attend to personal hygiene & more needed carers to do 2 hour turns caring for them exclusively. Longer than that was not psychologically supportable. 1

Ugh I swear if I have to go to the ER four days in a row

I accidentally took my hydroxyzine, Benadryl and Trazodone all close together. Should I go the ER? The pharmacist just said to watch my breathing in case it gets hard, but it’s always hard for me to breathe in.

Should moving my neck pop my thoracic spine?

@VitallyMelanie I actually cannot see or walk well but alright

You can see. You can walk. You can feel. There’s people who love you. Lives changed because of you. Many memories made. There’s still time for more. You woke up again. How lucky to have made it this far. Another chance to try again. Eternal gratitude is the most potent medicine.

@TheDivineBruxa Moorish Idol

✨🌊 Pick A Photo Free Reading 🌊✨ Close your eyes, take a deep breath, then comment the sea creature you feel called to the most today! Blue Dragon Sea Slug Moorish Idol Ribbon Eel Siamese Fighting Fish Reposts appreciated, must be following! 😘

What do you do when your mother is trying to kill you but you’re disabled and can’t leave?!?

Not my fuck ass mother screaming at me with a pill stuck in my esophagus while choking on my regurgitation and a healthcare working comes out into the parking lot

@tigerfly22 @gymrat_bookworm I’m on Quercetin and I can’t tolerate any food so I’m not sure but I don’t wanna try it again

@sadfoxqueen @gymrat_bookworm I couldn’t take doxycycline without antifungals. I also took cromolyn sodium at first then switched to quercetin which helped with allergies/ hertz reaction. Do you know if it could be mast-cell activation & not a straight allergy?

I am immunocompromised in the exact opposite way of a typical Long COVID patient. I posted my labs on here last week, and people mentioned that my cytokine depletion patterns match that of chronic lyme from what was published in a 2024 article. I told them that I had physicians in NYC and California test me for Lyme using the LabCorp Lyme blot. They then informed me that the LabCorp Lyme blot has a sensitivity of only 57.6% and to order IGeneX. I have encountered three people now who tested negative on LabCorp's Lyme blot, misdiagnosed with ME/CFS, decompensated and became or remained bedbound ill, then tested positive using IGeneX, and made a significant or full recovery with proper Lyme treatment. I am truly flabbergasted.

Not the person next to me sounding like they have TB and I don’t have mask because I got rushed to the ER

Not me having to go into the ambulance without shoes and socks. Good god

@sarabollman Well what does that even mean if my entire body hurts all the time from being disabled

Feeling your feelings means FEELING them (literally somatically, in the body) not thinking about them. I was confused about this for at least my first 2-3 years of therapy, lol. I’d go there every week and just talk about my interiority (those are thoughts, not feelings).

@tigerfly22 @gymrat_bookworm Oh that’s good. I have a doxy allergy so maybe that’s my issue.

@sadfoxqueen @gymrat_bookworm I did a full year of doxycycline plus antifungal meds. Helped a ton until i stopped it. Have been on hydroxychloroquine for 9 months now plus a bunch of supplements. That changed everything for me. But I also keep getting covid from my kids

@taracdennehy I did this in college too. I had Lyme disease

I used to do this in my early 20s. I’d eat lunch and drink coffee and then fall asleep in my car with an alarm set. That said I had undiagnosed ADHD and autoimmune diseases…

@Davemconte I think it depends. If I take more than a 1mg I feel like I’m gonna meet God, but I also have a hole in my skull

Why does Ativan/Lorazepam work so well in #MECFS? Immediately, you’ll hear folks shout, “IT’S A MAST CELL STABILIZER.” Yes, we know. But for those of us without MCAS, it’s still extremely effective. Central nervous system depressant, yes. Why can’t researchers manipulate that drug and combine it with another? If I took 10mg of Ativan a day, I could probably lead a normal life. Or make the drug safer. I dunno. Just thinking out loud since some of us don’t have 15-20 years to wait for an approved treatment.

@HollyMars2 Omg my inhalers don’t really help me either eventhough I have a history of asthma. Since covid my breathing is just fucked

“My heart is a disadvantage…”—Ayla, 6, while playing tag with me outside. The albuterol the cardiologist gave us doesn’t help. While the world has moved on, our family has been decimated by Covid infections. She wears a mask but takes it off for lunch and snack.

An OBAMA APPOINTED judge just saved NPR and PBS. That means your vote from 2012 is helping stop corruption and protect free speech FOURTEEN years later. This is why you vote

I just wanna get my feeding tube and get my surgeries and get away from my parents! But how does one do this with severe MECFS and on their own?!!

@jadethebpdcoach They told me I was too complicated to help

It is confirmed, along with a BPD diagnosis now in remission, I have epilepsy originating in the left temporal lobe. I have been to dozens of doctors, psychiatrists, and therapists since I was a teenager. People with excellent credentials, years of experience. None come close to the level of care I’ve received here on my first day at the #mayoclinic Thank God for this place. I hope if you have a complicated medical history, you get the chance to come here. You will not regret it.