Overview

Fantastic 👌

Thank you again! I finally got my infusion yesterday- hooray! I was pretty exhausted most of the day after that, and a little bit this morning, but I'm already feeling a bit better

That really stinks! I can't go out and just stay in it. But mine is due to a medication i take. I hope you find out what causes that for you. I know it's gotta be miserable!

does anyone have sun sensitivity? If so do u break out in hives? Last summer my arms broke out terribly everytime I went outdoors even just to the store. The drs were stumped said no clue why just gave me steroids because they got so bad. Now its starting again. Sunscreen doesn't help. What does everyone do to help?

Ohhh,yeah..I'm sorry to hear that. Such a frustrating thing these meds and insurance,and the like. I do hope things start to pan out better very soon🙏 And you're quite welcome ✌

I've actually now had a pretty bad setback the past few nights, but thank you. Yeah, they are pretty crappy, and even harder to deal with when your medication is repeatedly delayed

Those nasty chronic pain insomnia, and disease like issues are so crappy.Im glad you're feeling a touch better 🙏✌

Good to hear!

Thank you both! It was definitely a rough night, but I'm feeling a little better this morning

@lilpincess I'm sorry you had so much pain. I wish I could take it away for you. But I'll send prayers and hugs

I'm sorry, sending hugs

The pain is really bad tonight and it makes me feel really sad and lonely and broken

so frustrated. I have a few great days where I can do things and actually have energy then Im right back to pain, not feeling good and weakness. I need to work on the housework today to get it ready for summer to put the air conditioner in but after going oyt yesterday I miss want to sleep today. Its frustrating because I promise daddy Ill get something done then he gets upset I cant do it... He supports me and all but first fully yet how I feel..

granted but its the size of a sliver I wish it would never rain again

to fit into their clothes easier Why is the sky blue?

woes

I'm so sorry you are going through so much. Feel free to message me if you need to talk more.

*taps mic* I have no idea if anyone will read this, let alone respond. I'm in a bad headspace and just need to scream into the void for a second, so bear with me. I'm so godsdamned tired of hurting. A friend of mine (who is also a spoonie) sent me a tiktok not too long ago, that said "The normal level of pain is ZERO." That not even 15 second video absolutely wrecked me. Zero pain? What even is that? I sat for probably about an hour the day I was sent that and honestly tried to recall the last time I didn't feel pain. Answer: I DON'T FUCKING REMEMBER. Because even as a child I felt this pain, not as bad as it is now, but it was still there and very real. I very clearly remember telling my doctor that I was in pain when I was maybe 7 or 8 and his response was that I shouldn't lie to get attention. After that I learned very quickly that no one would believe me, my own parents didn't even believe me. How could a child know what pain is? I didn't LOOK sick. And if you don't look sick, you aren't sick. You're exaggerating. You're a hypochondriac. You're dramatic. Ultimately, you're just full of shit. You want to know what happens to a kid when they are told over, and over, and over again that they couldn't possibly feel what they say they're feeling? That kid believes that. I internalized that. To this day, I downplay my pain. I hide my exhaustion behind humor. I disguise my misery with a smile. Being gaslit my whole childhood about my own experience just lead me to not get help. EVER. Why would I? No one believed me before, what would be different now? I've only just recently gone to the doctor for the first time in nearly 10 years. It was the same doctor that my friend (mentioned earlier) goes to and this doctor is the FIRST to actually listen, to believe me, to look at me and say "this isn't ok, you aren't imagining this." Which is amazing, don't misunderstand. But it's hard to have hope that anything will actually get better. That's all I really want. I don't want the world. I just want to be okay. I wish that didn't feel so impossible.

Hi hi, Tw: talks bout knee injuries and lower limb injuries. So recently ive been having a bunch of pain in my legs. Specifically my calves and my thighs. Whenever i walk my calves get this intense pain in them and my muscles feel tense and tight and its hard to walk. My thighs on the top recently started too so im in pain most the time when i walk. I really easily pull leg muscles too (the same as everywhere else in my body). I does have a history of one of my knees dislocating so im not sure if what im experiencing is from that. I dunno im just wondering if theres anyone else who has potentially had similar things so i dont feel so left out. I found it incredibly hard to work because of my leg pains as it means even the simpliest of tasks like walking to work hurts so much. I try to power through the pain, but sometimes it really is too much. (Im going to my docs after the weekend to seek help, im hoping they can)

Foes

Mountains Summer or Winter?

Toes

Milk... coconut. Yummmm!! Beach or mountains?