Lets hangout for a #spoonie live chat and catch up while I give you life updates, including answering a question I’ve been …
18 Comments
I was told that it wouldn’t be fair to their other employees to give me accommodations. All I asked for was a stool to sit at the register with. Never mind accommodating all of my appointments. 🙄
I got a new prescription for potential Lyme disease, negative blot test, but reactive bands. But the side effects are quite concerning. Mainly the mental health side effects. But it can also make POTS worse. I really don’t need new or worsening mental health 💩. Nor an even higher heart rate. I still haven’t decided what to do with it. 🤷🏼♀️
I'm 28 and live in Australia 🇦🇺 I love you all so much ♡♡♡
I'm over my body and how much it's misbehaving 24/7. Not to mention the continued gaslighting and lack of ANY support from the medical system. It all sucks incredibly much and my poor mental health is definitely connected.
This is WHY I'm forever grateful for this community of people who truly get it. Thank you all for being here. 🙂 🤲🏻🥄❤
There is so much I want to say to you (in a good way, as in how much you have inspired me!) but currently at the 26 minute mark and you not being able to stop smiling is exactly what I was like when I was dating / engaged to my now husband – we were long distance at the time and any time I got off a flight and was walking into his local airport I literally could not wipe the smile off my face
Btw, I turned 42 yesterday so you are still so young! (But also don’t worry about what point you think you “should” be at in your life). I didn’t lose my virginity until I was 31, didn’t start dating my now husband until I was 35, and didn’t get married until I was 38.
OH MY FREAKING GOD, THE DISABILITY SSI THING. I have applied four times now, twice with a lawyer, I'm 23 years old, turning 24 in November, I'm bedbound pretty much, I spend 95% of my day in bed, and can only lay flat on a couch for like 30 minutes before I have to go back to my bed. I can't take care of my own daily care needs, not any of them. I've been denied 3 times… because I'm "not disabled enough." When I go out in a wheelchair which is only for dr appts, I haven't left the house for anything nonmedical since early February this year simply because I can't, and I literally LITERALLY, still feel like absolute hell in the wheelchair, and flare afterwards, but I have to go to doctor's appointments and continue fighting for myself… so I have no choice but to make myself feel like hell. And I have mcas, everytime i go to an appt, there's some sort of trigger that happens that's mcas-related, usually perfume or something else chemical that they use, or essential oils, or plug-in air fresheners. I flared right before christmas because a lady who is a perfume bather (my dad and i came up with that term because he's also incredibly sensitive to any fragrances), walked by us in a HEMATOLOGY-ONCOLOGY DOCTOR'S OFFICE. PAST A LADY WITH LUNG CANCER, like my dad and i started flushing turned bright red got migraines instantly just instantly felt like we were on our deathbeds. wow that started a tangent, lol sorry for my great many novel-length comments.
I’m so glad you found such a great guy! I hope to one day find a significant other just as great. Gotta get out of this bedbound/housebound state first. Girl, I have to ask in advance, do you have any advice for how to idk? Disclose, your disabilities, to someone you’re dating? Once I can get out there again, I feel like I need to disclose it before the first date obviously. Oh and how to spot red flags and green flags in a potential partner? I’m neurodivergent (autism, adhd) and I have social anxiety from that and I’m pretty socially stunted bc of how my childhood was (I was bullied in school). And chronic illness interfered entirely with my ability to attend college even online. So I haven’t had much in person interaction besides my parents for years and years now. So I have a lot of things working against me for being able to date and put myself out there… not just the chronic illness thing although that’s the biggest even though I know the right person a good person will stay through thick and thin and not make me feel like a burden, but I just am so afraid of being alone forever..
I was told that it wouldn’t be fair to their other employees to give me accommodations. All I asked for was a stool to sit at the register with. Never mind accommodating all of my appointments. 🙄
Floret for journaling! The developer is very kind & does free premium for those in need. 🤍
The difference in you from the last few lives is like night vs day.
Baby girl. The best revenge is happiness. Let them see how much better off you are without them. 🤍
I got a new prescription for potential Lyme disease, negative blot test, but reactive bands. But the side effects are quite concerning. Mainly the mental health side effects. But it can also make POTS worse. I really don’t need new or worsening mental health 💩. Nor an even higher heart rate. I still haven’t decided what to do with it. 🤷🏼♀️
Hello, Mama Murray! 14:00
Low spoons today. All of these appointments are kicking my butt. 2:57
The tea at last !!! 🫖 😊
Sadly I missed it 😢
Hi! Sorry I missed the live. Love you all and hope this community is doing well today💗
I'm 28 and live in Australia 🇦🇺
I love you all so much ♡♡♡
I'm over my body and how much it's misbehaving 24/7.
Not to mention the continued gaslighting and lack of ANY support from the medical system.
It all sucks incredibly much and my poor mental health is definitely connected.
This is WHY I'm forever grateful for this community of people who truly get it.
Thank you all for being here. 🙂 🤲🏻🥄❤
There is so much I want to say to you (in a good way, as in how much you have inspired me!) but currently at the 26 minute mark and you not being able to stop smiling is exactly what I was like when I was dating / engaged to my now husband – we were long distance at the time and any time I got off a flight and was walking into his local airport I literally could not wipe the smile off my face
Btw, I turned 42 yesterday so you are still so young! (But also don’t worry about what point you think you “should” be at in your life). I didn’t lose my virginity until I was 31, didn’t start dating my now husband until I was 35, and didn’t get married until I was 38.
OH MY FREAKING GOD, THE DISABILITY SSI THING. I have applied four times now, twice with a lawyer, I'm 23 years old, turning 24 in November, I'm bedbound pretty much, I spend 95% of my day in bed, and can only lay flat on a couch for like 30 minutes before I have to go back to my bed. I can't take care of my own daily care needs, not any of them. I've been denied 3 times… because I'm "not disabled enough." When I go out in a wheelchair which is only for dr appts, I haven't left the house for anything nonmedical since early February this year simply because I can't, and I literally LITERALLY, still feel like absolute hell in the wheelchair, and flare afterwards, but I have to go to doctor's appointments and continue fighting for myself… so I have no choice but to make myself feel like hell. And I have mcas, everytime i go to an appt, there's some sort of trigger that happens that's mcas-related, usually perfume or something else chemical that they use, or essential oils, or plug-in air fresheners. I flared right before christmas because a lady who is a perfume bather (my dad and i came up with that term because he's also incredibly sensitive to any fragrances), walked by us in a HEMATOLOGY-ONCOLOGY DOCTOR'S OFFICE. PAST A LADY WITH LUNG CANCER, like my dad and i started flushing turned bright red got migraines instantly just instantly felt like we were on our deathbeds. wow that started a tangent, lol sorry for my great many novel-length comments.
Sorry I missed it- time zones 🙁 but I’ll be watching it later ❤️🥄
Oh that dropping thing – it does that to me! 😂
Oh also that REM sleep thing is common among EDS patients. I remember seeing a study about it I think.
I’m so glad you found such a great guy! I hope to one day find a significant other just as great. Gotta get out of this bedbound/housebound state first. Girl, I have to ask in advance, do you have any advice for how to idk? Disclose, your disabilities, to someone you’re dating? Once I can get out there again, I feel like I need to disclose it before the first date obviously. Oh and how to spot red flags and green flags in a potential partner? I’m neurodivergent (autism, adhd) and I have social anxiety from that and I’m pretty socially stunted bc of how my childhood was (I was bullied in school). And chronic illness interfered entirely with my ability to attend college even online. So I haven’t had much in person interaction besides my parents for years and years now. So I have a lot of things working against me for being able to date and put myself out there… not just the chronic illness thing although that’s the biggest even though I know the right person a good person will stay through thick and thin and not make me feel like a burden, but I just am so afraid of being alone forever..
I didn’t even know you and autumn had broken up. You guys can really keep a secret
I’m soooooooo happy for you tho!!!!! ❤❤❤❤❤❤❤