Lily K

Why aren’t we ever protected ever??????

Accts are getting hacked. Like, the acct disabled people can have, the ONLY acct disabled people can have to have money for housing, medical, and other life expenses in any amount beyond the SSI cut off that won’t make them ineligible for benefits those accts are getting hacked like quarterly.

Home smells like tacos now, which isn’t bad for now. Clarity of function like this I haven’t seen in nearly 4 yrs? Will it stay, no, but maybe the steroid is helping the inflammation which is helping the brain fog. Anyway, a nice switch up. I did learn one crappy thing, people are reporting ABLE

I made nachos! This is a major executive function win. Like, my brain wanted nachos, it realized I could try to make them, made a list of what was needed, was able to get the ingredients on a quick get them post laser therapy for Weenie, and then assembled a lunch, refrigerated left overs.

a bit of back pain relief as well. I think the inflammation reduction let my back adjust itself. It cracked itself hopefully into the right place when I stood up this morning. Also didn’t wake up in excessive pain from just sleeping last night which felt like a miracle. Headaches so far have been ok

In personal news…as I guess I choose dissociation or whatever since there’s a whole life of chronic illness that demands a lot out of me. 5 day course of steroids has actually been fine. It tends to be like this with the non-dose pack course. That tends to be less harsh for me. Actually getting

Today’s US news cycle 😬😬. Another day of something literally outrageous happening, but the needle has incrementally moved toward tolerance of this rhetoric. It happened in the past in…

It’s still wild we watch this stuff regularly & I cycle between many states of being over it.

I have post Covid syndrome/long covid and depending on how all my labs come back will determine next steps depending on how I feel in a couple weeks on doing a ME/CFS work up.

Ah the joy of prednisone. It’s helping the sinus inflammation but aggravating the sleep issues. And having the hiccups for 45 mins didn’t help. Outcome of PCP appt was to do a course of steroids to knock down sinus inflammation to keep anything from turning to a bacterial sinus infection if possible

Maybe the pieces are connecting

The random fevers, the fact that pre-covid it was 1-3 days sleeping after a social or physical event, post covid (maybe related or not) it’s 1 week, the headaches & light sensitivity rollercoaster (not related to the sensory sun/bright light sensitivity I’ve always had, that’s different), dizziness

Symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS has 5 core symptoms. Diagnosis requires 3 main symptoms and at least 1 other symptom

I’m thinking it’s probably a reality at this point that this might be playing a part in my life. I seriously wondered in 2022. I feel like I can confidently check yes on a lot of the stuff.

www.cdc.gov/me-cfs/signs...

the same dose on the name brand? Is that stuff actually true about generic vs name brand of these meds (aside from the recall, I believe that and why I doesn’t work, etc) do impact side effects. Now I’m stumped… I guess I really need like 2 weeks of them to see if their efficacy ends to really see

On a day when you have a fever, it’s probably not wise to attempt an experiment especially after crazy medical issues, but I have adhd med generics that are part of the recall, not recalled that are “old” but not expired (I don’t think) same dose, name brand…why do I feel completely different at

Snagged an appt with my PCP. Was going to wait til I could ideally get a Thurs/fri to get my vaccines since I had to wait 3 mos post covid, but I need a “I’m sick & my body is chronic illnessing in concerning ways” visit.

It’s sinus infection season for me so…or it’s just random fevers when I flare like 2022 when my body tanked majorly with the chronic illness stuff.

I managed to make a water with electrolytes, did fall asleep for 2 hours, woke up aching & with a 100° fever & now many hours later don’t feel what I was feeling earlier. I did later look up dysautonomia & anemia symptoms which both might be the issue. The fever could be related or unrelated

The experience, so already being anxious when the words won’t come out as well without pre-scripting & trying to capture the text? Then all the concerns of am I just worrying too much about nothing? Maybe just sucking it up and waiting it out and things will be fine, and all that crept in so

It wasn’t right. However, I was kind of stuck. I kept imagining triage asking my symptoms & trying to explain them with “I feel strange & not right” (like I was super concerned for myself) but also how do you get a hospital to take you seriously if you can’t find the words in your head to describe

I had a solid 2-3 hours where I was nearly 1 foot out the door to the ER this afternoon. I felt so unwell but it was just odd & off. Weakness. Shaking. I think I was experiencing dizziness in my head but I’m not 100% because I struggle to put words to what I’m feeling so I couldn’t describe it but

I swear it’s got a lot of benefits & I actually like it. Tofu scramble was another recommendation. My friend used to make me tofu scramble all the time with kale & sweet potatoes. It was my favorite dinner ever. But I should figure out how to make it for breakfast. I love tofu.

Read up & for optimal insulin resistance 30g of protein at breakfast is recommended. I read what is 30g of protein and 5 eggs! I’m not eating 5 eggs for breakfast. I think that suggestion ( it wasn’t AI) is not happening. But 1 cup of cottage cheese is 30g. Cottage cheese is legit a magic food

Woke up again feeling my 5th day of just blah but really 4th day of incapacitating flares. My OT actually had the same thing & is getting the same sinus pressure headaches that won’t go away. I crashed for like 3 hours & did manage GF Mac & cheese & broccoli for dinner & dried mango for later snack

Less luxury apartments are needed, more section 42, and market rate definitely needs to fall. It’s insane a 1 bedroom in some places is costing $1500/mo or more.

I guess the good news…new fandom unlocked for me Avatar the Last Airbender. Should I ever do my regular walks like I did, the Nickelodeon store was loaded with merch to feed this fandom if it sticks. It might cuz turtle ducks, lion turtle, 4 winged penguin sleds, sky bison! Totally up my alley

This week looks like this. Rollercoaster weather pattern is not my friend. Sinus migraine has been back with a vengeance too

I know I have fibro, EDS, and PCOS…and every one of those cause exhaustion. And maybe it’s just another really really bad year again after a couple winters that were ok. I could not move last night or well today at all & Weenie dog and I just slept pretty much all day today. My back is so angry

starving. He f-ing appealed it…like, he just inches that goal post of acceptable cruelty to normalize it like they did during certain horrific events during World War II….

are subluxing so breathing is painful on one side but it’s an external pain from my rib, not like an internal issue from something else.

And in we live under a cruel ruler who has no compassion…our President appealed a court order to fund SNAP, a program to keep kids & vulnerable people from

Time change has been brutal. I can’t stay awake this week. My pain is also increased a lot & all the work I feel like I put in physically rehabbing feels undone like my body just can’t function anymore. It just quit. I had a pretty significant POTS-like episode yesterday. Today it feels like my ribs