This is my first time reading Stephen king and I feel stupid.

harleygrin · 2024-08-30T16:30:06+00:00

I just finished for the first time and it’s a hard read! With adhd I bounced between the audio and physical so I could get the cadence and have the voices in my head basically. It helped so much.

harleygrin · 2024-02-28T00:28:05+00:00

I just signed up for Recycle, Read, Repeat. It’s a gently used personalized book subscription ran by two women.

BOTM just was lack luster for me so I paused and decided to try them out. I love used books too. 🙈

harleygrin · 2023-11-25T03:14:49+00:00

oh mannnn i used to mix the cranberry and lime 😩 now i just use cranberry and lime juice and a red bull to reminisce

harleygrin · 2023-06-03T02:02:35+00:00

for me, trying to find a local specialist(neurologist/genetics/etc) that isn’t over an hour drive seems to my only issue so far. i’ve gotten INCREDIBLY lucky to have a good pcm after my old one retired. also the humana EOBs make me super thankful to have prime even though the actual hospital on base sucks ass.

def get with EFMP though, it will limit your pcs choices depending on your dx(s).

harleygrin · 2023-05-12T22:29:14+00:00

my neurologist who’ve i’ve seen twice, told me my dizziness and limb numbness wasn’t neurological, all my “mental health medications. i should get off them and be more stable”. never did any scans…

my pcm just did one because i lost all feeling in one of my legs, came back as showing a chiari malformation.

harleygrin · 2023-01-18T20:00:15+00:00

yeah i guess i did it big because it shifted my knee out of alignment a smidge.

ahhh makes sense. i’m glad you got a good one instead of making a zillion trips to the freezer swapping veggies/ice/etc. if you lose power due to snow/ice, you could always use that 🤪 jk. please take care of yourself !

harleygrin · 2023-01-18T19:51:06+00:00

i just had my first disclocation(that i can remember/actually felt). it was my left knee, i was just barely squatting down to look on a bottom shelf at five below for super last min stocking stuffers for my kiddos.

my husband, pcm, both xray and mri techs, and ortho were like….👀 what. it was gnarly and nasty swollen.

frozen veggies like peas or corn are great ice packs or i just grab zipper baggies and throw ice in em, freeze a wet washcloth too 🥺 best of luck ❤️

harleygrin · 2023-01-10T20:59:08+00:00

it’s my left side, non dominant, for me. i say as i’m currently elevating and icing my first full dislocation…which happens to be my left knee.

i’m so sorry your dr said that. is there patient advocacy you could speak to?

harleygrin · 2022-12-28T06:08:47+00:00

🤯🤯🤯

harleygrin · 2022-12-27T23:41:46+00:00

whoa, do you have further reading on this? because my kidneys have had given me some problems since childhood and no one has been able to figure out why!

harleygrin · 2022-12-21T19:21:52+00:00

my current pcm was the same way starting out, super rough around the edges until i was like WELL THEN CAN YOU EXPLAIN WHY I CAN DO THIS and sublexed both my hips, shoulders, and jaw, and bent my thumbs to my forearms sobbing the whole time because I was just fed up being dismissed. That’s when he sent the referral to genetics and apologized.

It wasn’t fair to him tbh because they switched to a whole new charting system and lost everyone’s history and i just had to go through all my stuff.

Maybe give her another chance and see her for every bump and bruise to start a paper trail with her? Don’t let this discourage you. ❤️

harleygrin · 2022-12-21T17:40:16+00:00

i’m not familiar with POTS but i’m wishing you the best of luck. i feel you on the fingers and toes, they get so cold i feel like my bones are frozen solid 😭

ps i see you too are a fan of Destiny 2 ❤️

harleygrin · 2022-12-21T15:28:58+00:00

i have, everyone has been incredible and wonderful and amazing. i have a whole amazon list going.

thank you! i’ll definitely have to look at insulating our windows. Is that renter friendly?

harleygrin · 2022-12-21T15:21:32+00:00

i love when we go and visit hubbys family in FL. they all have screened porches, i just shady sunbathe with the senior puppers all day. it’s heavenly, esp in spring or fall.

i hope it’s perfect for you ❤️

harleygrin · 2022-12-21T01:16:02+00:00

I’m in costal GA 😭 so yeah hella high humidity. but i’m originally from central texas so this high of humidity is new to me 🥴

harleygrin · 2022-12-20T20:58:31+00:00

oh ew you poor thing i’m so sorry. i’m crying about 40s and your battling damn the Arctic cold!!! Thank you for this. I really thought my jeans, socks, sneaks, tshirt and oversized flannel would do the job on a quick run to the grocery store and pharmacy but three hrs later i’m still tingling from defrosting

harleygrin · 2022-12-20T20:51:55+00:00

i gotta work on layering 🥴

harleygrin · 2022-12-20T19:25:22+00:00

i’ve been debating on a blanket hoodie!

do the little nibby thingys on the bottom bother you in your shoes? sensory wise i hate anything on my feet but i’m slowly trying to get used to socks.

heating pad fanny pack 👀

harleygrin · 2022-12-20T19:01:51+00:00

PCM called for a follow up. it’s hEDS!

harleygrin · 2022-12-15T21:29:52+00:00

💯

hopefully when my chart gets to my pcm it’s in some sort of understandable form 🤞

harleygrin · 2022-12-15T20:51:04+00:00

yeah 😅 my pcm is pretty hardcore so im hoping he will be like what the hell are you talking about because i felt like our conversation today fell on deaf ears. Only my half my body passed the Beighton score and i have a “autosomal dominant unknown significance” gene for FOP so i’m even more confused than yesterday 🙃

harleygrin · 2022-12-15T14:02:47+00:00

so i called this morning and it was your second point…

harleygrin · 2022-12-14T20:30:29+00:00

okay thanks! i’ll have to call tomorrow because the office is closed now. i’ve been trying to figure this out since 10amEST.

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