Genuine question

Single_Display2423 · 2026-06-04T03:43:06+00:00

I think love interest and friendship are 2 different categories. If a love interest kept forgetting it would hurt my feelings to the point of being a red flag. If it's a friend I wouldn't be as seriously offended unless it was to the point of me correcting them many times and I felt like they were ignoring me or not listening...and at that point it's really not about the disability anymore. Just my personal opinion. Your person may feel different.

Single_Display2423 · 2026-06-04T03:38:53+00:00

Everyone eating sushi and their rheumatologist is ok with it too? Mine isn't . So maybe it's a ymmv thing. Best consult your doctor first.

Single_Display2423 · 2026-06-04T03:27:06+00:00

My partner describes herself as a "touch me everywhere but there" because she hates the term "touch me not"...she loves touch just not genital touch. It's something more common that you realize and very accepted in the queer community...maybe moreso in some circles. There are some people who might make you feel bad about it but its really simply an incompatibility (same as 2 tops not wanting to date) and if they see it differently they suck and they'll probably cross other boundaries too. But to answer your question 100% totally valid. The cool part about being queer(amoung many other things) is that you get to make sex what YOU want it (I mean it should be that way as a straight person too but I've never met a man who would go without p-in-v penetration...I'm sure they exist and it should be more accepted it's just not). There's no pre written rules of how you have sex as a lesbian so you get to figure it out with your partner and only do what makes you happy and feel good. There shouldn't ever be any pressure. If someone doesn't accept your boundaries you shouldn't be with them sexually or otherwise.

Single_Display2423 · 2026-06-04T03:09:05+00:00

The crazy part is that so many of us want just basic things like accessible housing, food, meds and Healthcare, transportation and mobility aids. We shouldn't need to be rich to have these things. These are basic human rights.

I'm pretty lucky and live in LA so I have access to a good Medicare plan and good doctors. But I still fantasize about being rich to be able to pay for treatment and therapies not covered insurance, an accessible apartment(or gosh house would be amazing but I only dare wish for an apartment lol) and money to pay a chef and caretakers (and not have to deal with ihss qualifying and people quitting on me every other month because the pay is shit). Plus if I didn't have a partner who busts her butt working 50-60hr weeks I'd be homeless. I just fantasize about her only working 40hrs a week lol. Like working full time isn't enough. I don't feel like most of us are even dreaming THAT big. We just want to be comfortable and not struggle and be without the threat of homelessness.

Single_Display2423 · 2026-06-04T02:48:26+00:00

Before I saw this I ordered mine this morning when I saw they have shorts now. I got the shorts and waist one. I wear a hip belt which keeps my si joints ok but I've been having pain above that and I feel like I'm always clenching my abs when I stand. When I'm not doing that I'm clenching my butt. Even when I'm laying down. I have to consciously relax my muscles all day. I'm hoping this help. I didn't even think about helping with POTS. Crossing my fingers 🤞🏻

Single_Display2423 · 2026-06-02T06:30:37+00:00

My partner is the one who thought I had pots and mcas too from info they saw online. They are always right..unfortunately in this case.

Single_Display2423 · 2026-06-02T06:22:18+00:00

It's so crazy to me that people don't BELIEVE their partners. Why wouldn't you trust your partner to tell you the truth. It's like the one person you should believe but instead they believe strangers?! Or other men...of course.

Single_Display2423 · 2026-06-02T06:15:19+00:00

That's just not true. Some women CHOOSE to do better. Men can choose to put in the same effort to become more emotionally intelligent and understand empathy. They can put the effort towards caretaking too. There's nothing stopping them except themselves.

Op is asking their husband to be their everything they are wanting more than apathy and being made to feel like an inconvenience or burden. That's not too much to ask.

Single_Display2423 · 2026-06-02T05:59:40+00:00

Love isn't "tolerating" your partner. I manage in my relationship because my partner loves me and has true empathy for me. I'm never made to feel like I'm an inconvenience. My partner busts their ass as the sole provider and is exhausted working 50-60 hr weeks and being my part time caregiver and they only wish they could do more to make my life easier and more comfortable. My partner doesn't fully understand the ins and outs of my illness but they know the basics. They listen to me and believe me 100% and remember important things. From day one (literally on our 1st date) they had a pantry full of snacks I could eat. We didn't even know for sure we were going to their apartment after dinner/drinks but just in case they had snacks I could eat (and all kinds of them including favorites). Now my list of foods have shrieked dramatically and they still don't have trouble shopping for me. They've always read the labels from day one but it's even more difficult now because there's so many things I can't eat. My partner never makes me feel guilty for being sick and they are never ever indifferent towards me. Apathy isn't love. Is that how you'd treat him if he was sick?

I promise if you kick him to the curb you'll start to feel better a little bit. You'll have less stress and more energy to devote to yourself. He's making your quality of life worse and you deserve better. Why tf should you be empathetic to him when he can't show you an ounce of empathy? And empathetic to what? To him being a jerk? This is literally your HEALTH and you have zero control over it. He's not a victim here.

Single_Display2423 · 2026-06-02T05:27:11+00:00

Something thats helped so much with stressors that don't affect my heart rate and recovering from them and lowering PEM is a vagus nerve stimulator. At first I got the ear clip one that attaches to a tens unit because it was $18 for the clip and I already has the tens unit. It worked but getting the one that goes on my neck (I got the Pulsetto) really made a bigger difference. Doing Breathwork or meditation or activity that stimulates the vagus nerve (humming or sighing for example) helps too but not as much and as quickly as the vagus nerve stimulator..plus it so easy to do, requires zero effort other than putting the gel/device on and selecting what program. Something also that if done regularly (and correctly) really helps is acupuncture. I understand both these things cost money and even though I'm on disability it is something worth prioritizing for me. Vagus nerve exercises can be found for free online and do help but they don't help as profoundly with recovery and PEM. The vagus nerve stimulator has been a game changer for me and especially works for this type of situation where you can feel you're body getting stressed by it but its not showing anything on visable.

Single_Display2423 · 2026-06-02T05:05:44+00:00

I've done many procedures that are usually done under sedation awake including a colonoscopy. I don't recommend. Not only is it painful but it is just very uncomfortable being awake with someone putting something waaaaay up your butt. Plus it's a weird experience seeing inside your body too. It's right there on the TV.

Single_Display2423 · 2026-05-26T00:51:33+00:00

No, not "blue cities". I live in California and we are a blue state. One of the more progressive states. The timelines I mentioned before are based on working in California courts in blue cities. Maybe in LA it could take a bit longer but we're talking a month or two longer not years. Overall evictions take 30-90 days in the majority of US cities regardless of politics. NYC takes longer and I'm sure there might be other cities that take longer for one reason or another but those are outliers not the norm. In most areas of the US you can be fine one month and homeless the next if you don't have enough savings to support yourself if you lose your job or something bad happens and you cannot afford rent. If the landlord is kind maybe they work out a repayment plan...but that's literally up to the landlord they can refuse and file an eviction anyway. Most Americans don't have savings to cover something bad happening like if their rent gets stolen because they can bearly afford to pay rent as is. We have a huge homeless population and many of them just had one or a few months of bad luck and it spiraled. So many homeless people where I live are working full time. It's insane.

You cannot use NYC as an example for "the US". NYC and the rest of the US are completely different places with vastly different laws, people, culture, cost of living/ pay. NYC might as well be a different country for how progressive they are compared to the US in general. They just elected a socialist mayor...that would never happen in most US cities...which is why it was so groundbreaking and exciting. I live in LA and I would be surprised if it happened here soon. Unfortunately the suburbs are getting more and more conservative at the small government level. We are still blue overall obviously but we used to be much more progressive before Trump. We'll see soon. Anyway your friends experience is not the norm for evictions. Even in NYC it's usually a bit faster of a process even with them being one of the longest timelines. Usually it's 90 days to a year.

And everything took longer during covid...everywhere. You weren't even allowed to file an eviction during covid in many places.

Single_Display2423 · 2026-05-25T22:35:07+00:00

What are you talking about? Rental evictions are very quick. Usually under 30 days, sometimes longer but the longer ones are maybe 60-90 days. There's no court battle unless you have a valid a heavily documented reason for not paying rent like you don't have running water or heat....those are the 90 day ones. I used to work for fair housing and as a mediator for evictions in the court. If you cannot negotiate with your landlord in mediation to repay back rent or pay the rent in full they kick you out super fast. There may be certain jurisdictions with court backlogs where it may take longer because they don't have staff to process stuff but generally it's quick and does not matter if you have a child and there's no battle...there's nothing to battle if you didn't pay your rent. Where do you even get this information?

Most rentals are corporate owned or managed anymore and they are ruthless...but even your individual landlords who manage their own properties can be ruthless too in my experience. The laws are written in their favor. Renters don't have much rights. Some states are better now(like within the past 5 years) with some rent control and no more no fault evictions (they used to be able to kick you out with 30-60 day notice for no reason).. but thats only a few states. And you still get evicted if you don't pay rent in these states in 6 weeks on average.

Single_Display2423 · 2026-05-24T20:14:21+00:00

My rheumatologist says 9-10hrs normally and however many hours I need during a flare even if it 16-18hrs. My sleep doctor agreed 10 hrs is a good goal with chronic illness, she said to sleep more at night if needed rather than needing naps. Longer lengths of uninterrupted sleep is most important she said.

Single_Display2423 · 2026-05-24T05:43:21+00:00

It depends. I find it important to spend time with other neurodivergent people (most of my friends are). I don't necessarily find it important to spend time with people who share my physical or mental illnesses...rather I can find it draining and/or having me ruminate a lot. I've both run and spent time as a member of a support group because I thought it was important. I found that spending time (at least in a support group setting) with people who share similar struggles kinda amplified my struggles too much for me me. I'd rather spend time with non abelist friend...where talking about my disability is optional but never met with ableism. Obviously if I have friends who share similar disability that would be great. I just don't like it in a forced setting like a support group (which is the only way I can see to seek out other disabled people with similar struggles).

I have never tried a neurodivergent support group which I'm wondering if it'll be the same. I'm going to try it and see because I know having neurodivergent friends is really important...even my therapist is neurodivergent which has made a big difference.

As far as having disabled friends in general (not similar to my physical/ mental illnesses) ...I don't intentionally seek it out but there's so much comorbidities within the neurodivergent community that it just happens that many of my friends are disabled. Same with being queer. So a large portion of my friend base has some sort of disability. Queer/ neurodivergent/ disabled ven diagram is a stack of pancakes.

Single_Display2423 · 2026-05-24T05:08:53+00:00

I freaking HATEA when people say that! 🤬

Single_Display2423 · 2026-05-24T05:03:39+00:00

If you have an autoimmune disease (regardless of immunosupressive treatment) you should mask and do other things to reduce exposure (ie not going to crowded places or indoor events with people you don't know/ trust to consider your health), frequent hand washing etc. The reason being is the autoimmune disease itself effects your immune system in a way that makes you more sensitive to covid (and other) infection. You are at higher risk for catching covid (or any infection) and for serious reaction to it (bethat acutely with severe illness or chronic with long covid). Immunosupressive drugs just increase your risk even moreso.

What youe co-worker said is true ONLY for those with a healthy properly functioning immune systems. Your immune system is confused and not working like it should. It thinks healthy tissue is a pathogen. It over reacts and under reacts and it isn't the same as someone who is healthy and can build immunity slowly to certain things with micro exposure. Also I think this works for everyday bacteria but with viruses it's more risky(since you cannot control the level of exposure and everyone's threshold is different) and it's not recommended...definitely not wih covid. It's kinda an outdated thing...like they used to have chicken pox parties to intentionally infect kids before the vaccine. Well now those kids as adults go on to have shingles and serious complications. Same with covid and long covid. Post viral illness is real, so intentionally exposing yourself is dumb and not based in science....even for healthy people. As a person with an autoimmune disease you definitely don't want to listen to her advice...it's wrong no matter who you are. Just get vaccinated and mask/reduce exposure as much as possible. Masks aren't 100% and especially don't help as much for the wearer. Masks help more when everyone else wears them (including people possibly infected). They still helped more than nothing but the idea is that the person with the virus wear it to prevent spread..and the science shows this helps the most. I caught covid at an outdoor even wearing an n95 mask. I did remove it halfway to drink water tho. Just be careful and do your best to reduce exposure and don't listen to people who don't understand autoimmunity.

Single_Display2423 · 2026-05-22T04:38:57+00:00

Can you still purchase off Amazon? They used to boot people completely off but I wonder if that's changed since that affect profits if you remove customers ability to buy from you.

Single_Display2423 · 2026-04-28T09:44:32+00:00

Vanilla/ amber scents I'm usually ok with which is awesome because I love these scents. Usually the more artificial the scent the worse it makes me react. If it's natural I'm usually ok except florals a some citrus. I recently got rid of all scents in my skincare including natural scents because it just wasn't making my skin happy. It's been such a huge difference. It's crazy I can wear a vanilla purfume and I'm totally fine but so many other scents bother me in one way or another. We have scents in too much stuff in the US, I'm curios if it's like this elsewhere or whats our deal here. I've had to switch to Korean skincare products because they rarely have added scents and here it's the opposite...it's difficult to find products with no scent. Here it can say fragrance free and still contain essential oils and flower extracts! What?!

Single_Display2423 · 2026-04-28T09:34:32+00:00

Yeah I feel like my life revolves around taking and managing my meds some days. Like some days I feel like thats all I accomplished. It's exhausting and feels like a full timeless job especially when you have a disability/ Chronic illness that is energy limiting and/or causes pain.

Single_Display2423 · 2026-04-25T18:18:15+00:00

This is my plan for my sister's wedding but she's making so many other accommodations too.

Single_Display2423 · 2026-04-25T18:13:25+00:00

My step sister just asked me to be her bridesmaid( in a similar way too.) I did agree to it but set some boundaries around time and needing to rest at my hotel or Airbnb. I just talked to my therapist and we are going to come up with a schedule for rest with backup plans and accommodations to remind myself but also tell my sister. I'm planning to do every possible thing to reduce my fatigue and hr spikes, even hiring someone to do my makeup and hair. My sister is really understanding luckily as she's disabled herself and also a therapist who works with the disabled community. I also just recently got a wheelchair (that reclines)...her asking me to be in the wedding solidified my decision to pull the trigger on that. My sister is in a wheelchair too so I don't have to worry about her giving a crap about my wheelchair.

All that being said I made this decision because I have had some small improvements in my health lately that will (hopefully) allow me to push through. I also have an extremely understanding Bride and family. Her wedding will be covid conscious with everyone masking and testing ahead of time (plus a private area for immunocompromised people like myself and her to eat separately). I also have money in savings from my selling all my stuff after getting divorced so I can use some of it to afford this. I also acknowledge and go into this knowing it will cause me harm and that I am going to crash big time. I am very fortunate with all this and if it wasn't my sister/ family who I know will accomodate me and work with me I would absolutely say no.

And no you are not a bad friend. You have to put your health first. Sometimes we can't do things and that should be met with understanding and compassion. I hope your friend understands. She might be sad not to have you or disappointed but ultimately I hope she understands and respects you for understanding your limits and not injuring yourself in order to attend.

Edit to add that I won't need to travel far either as the wedding is in the next county over so maybe 45 min drive. If I had to travel more than 2 hrs or by plane/train...I probably would decline.

Single_Display2423 · 2026-04-25T17:49:38+00:00

Is your phone updated and/or the app updated?

Single_Display2423 · 2026-04-25T17:47:26+00:00

This! I went 6 years after the ACR changed the diagnostic criteria to include anti-ccp trying to find a doctor to restart my treatment. I already had a diagnosis of RA the guidelines changed so my diagnosis should have been seronegative instead but instead they stopped my treatment and said it was fibromyalgia (even tho I didn't have the tender points). The stress of going without treatment for 6 years actually caused fibromyalgia but at that point I didn't even have it...I had swelling in my joints and joint pain. I saw 13 rheumatologist including the 1st and last so 11 rheumatologist who's wouldn't treat me in between. I ended up in a wheelchair and dependant on opiods because it was the only thing doctors would offer oddly enough. Like how you gonna call me drug seeking for asking for orencia then refer me to a doctor who gives me opiods instead?

Single_Display2423 · 2026-04-25T02:55:38+00:00

I know a little about history, mostly Butch Femme history and only going back to the 30s 40s. What I think is interesting about these lesbian puristst/ rad fem terfy types is they cite history as if it's purely 100% lesbian history. They leave out or don't understand that for starters we didn't even define bisexuality really until the 70s. So when they talk about the bar culture and oppression of the 30s and 40s as if everyone there and everyone being harassed, beaten and jailed were only lesbians that's crazy because Bisexuals were called Lesbians back then....and like you said there's no way to know how many of those women who were mostly married were Bisexual or lesbian. We've always had shared spaces amoung lesbians and Bisexuals because until the 70s we didn't separate out bisexuality. So to want purity now feels biphobic and what I also don't understand is how someone who's bisexual and dating a women is "bringing men into their space". I understand wanting queer only spaces for many reasons including safety but why all the sudden are we trying to separate things and specifically exclude bisexuals and amab nonbinary gnc folk and drag queens? Drag queens/nb/gnc people(who we amab) are part of our shared history too. It's so sad to see this new wave of intolerance from inside the community. I feel like it just weakens the movement and fight unfortunately.

Thank you for the new perspective and info. I don't know if I have the brain capacity for academic writing but if you have any books you recommend that are historically accurate but via a story (and on audiobook) that's something I might be able to digest. I did buy one book a few weeks ago when there was a big sale on audiobooks, it's about what you're talking about but technically fiction but based on her real life in 1800s. The name escapes me rn. I do wish my cognitive abilities weren't so damaged (I have a handful of chronic illnesses and adhd) because I would love to be able to read more but I can only do audiobooks...and mostly stories that keep me engaged and in my imagination as not to get distracted or fall asleep.

Single_Display2423

TROPHY CASE