• Yayy!!!

  • If other people are on Tumblr, my url is lesbianremus over there. I mostly fandom blog, so if anyone has good community general spoonies suggestions please let me know!

  • I've found anti-inflammatory stuff (fish oil high dose and watching my food allergy / digestive stuff), and balancing resting and stretching is helpful. I've started doing gentle yoga in bed for like 10-30 min a day which has made a huuuuge difference, especially with neck and shoulder tension headaches.

  • I really struggle with the protein and fat too and I've found smoothies with a good protein powder/nuts and seeds to be really helpful with my energy levels.

  • I had one of those a few months ago, along w a hepatitis blood test. Mine came back normal (except some small gallstones, they did like my whole abdomen) as well. I'd agree try not to worry as much as possible until you get the results back!

  • I take .5 (I think) xanax and magnesium glycinate before bed. And yeah, same on the listening to my body? Trying to force myself into a regular sleep schedule usually just leads to a huge uptick in depression/anxiety and insomnia. I generally try to go to bed sometimes between 9 pm and 3 am and wake up between 7 am and 2 pm, but that doesn't always happen.

  • I take a high dose of fish oil (abt 9000mg) daily. I've also tried curcumin before (worked pretty well, I might try adding it back in). Those both helped a lot with my body pain, which I'm fairly sure is mostly inflammation based. I'm also trying to figure out dietary stuff which will hopefully help in the long term! Cutting out foods I'm allergic/sensitive to has also helped.

  • Mostly a lot of question marks here. Chronic body pain that is probably linked to something autoimmune, since stuff treating inflammation helps decrease it. Hashimoto's, depression, anxiety, OCD, general neurodivergent brain stuff. A lot of food sensitivities (mostly gluten and dairy) and digestive complaints but not sure what's causing those.

  • I'm supposed to be keeping a food journal for my nutritionist and it's been really triggering my food issues/self criticism. I've talked to my therapist about it (and the nutritionist knows that even just writing stuff down is a big struggle for me and so other progress might be initially slow) and she was somewhat helpful, but I'm still just exhausted from fighting with myself every single meal :/ I haven't been able to find much about this specific issue online so any tips would be helpful.

    I've sort of gotten back to my 'goal' starting point of eating when I feel hungry instead of waiting as long as possible but it's back and forth.

  • :( I hope you feel better soon!!!

  • I'm sorry about that :( I hope you find some nice people!!

  • I think just telling her stories about your life and what's going on with you would be nice! I lived a ways away from my grandmother and we exchanged letters for a while. It was sort of awkward at first, but became less so as I got used to it. Reading to her or helping her set up audiobooks to listen to might be nice as well, since those are more hearing/cognitive function based and don't require vision or motor control on her part.

  • I've been working on doing gentle yoga on high pain days, which has been helpful. Since I spend so much time lying down bc pain, the movement helps with stiffness. Depression has been awful today though...hoping it will back off soon. Hope you are all doing well.

  • Seconding both the list of symptoms and the "NOPE" thing. I spent so much time with doctors who made me uncomfortable or aggravated my mental health issues bc I was just like "Oh I don't want to be a bother" or "This is how all doctors are" but you definitely deserve a doctor who you are comfortable with and who you can work toward mutual respect with. If they make you uncomfy or are rude, feel free to move on from them. I also found going in with a list was really helpful because I have a lot of anxiety related to doctors and it helps ground me/makes so I don't have to remember a lot in the moment.

    As far as autonomy/choice/influence, I still struggle with telling my doctors to do things my way and stick up for what I can't stand/absolutely need, but I think it's worth doing. I guess one upside of having chronic health issues is it's made me slightly better at nodding politely and then ignoring advice I find unhelpful or harmful. (This also ties in with trust. I tend to talk to my doctors I like and trust much more openly because they're good at working with me and respecting my autonomy, and I trust that their advice will be actually helpful or at least worth trying). You know your own body and you deserve a practitioner who respects that!

    I'm sorry I don't have any system specific tips bc I live in the US :/ But good luck to you!!

  • hah well apparently google has a similar functionality. somewhat creepy; i googled 'find my android phone' to try and find an app for it or something but a little map popped up. if it's linked to your google account you can use that to make it ring!

    yeah absolutely! i keep eeeeverything on my phone XD

  • Went to therapy and got some blood work done today so I feel v productive! Trying to wrangle all my various reminders into an actual functioning to do list because I've been having that feeling of confused/overwhelmed when things keep randomly popping into my head that I need to do >< I'm finally getting back to normal energy levels after getting glutened a couple weeks ago which is nice!

  • Idk if this is helpful but if you have an iphone, you can log in to your icloud account on a laptop and get it to play a sound on your phone. Idk if there is something similar for other kinds of phones but just so you know! I keep everything on my phone too and that is such a scary moment when you can't find it!!

  • I'm not sure if this would help you but I take a high dose of omega 3 fish oil (abt 9000 mg I think) daily. I also tried turmeric/curcumin and it helped somewhat with my pain level but can mess with your digestion and since I also have issues with that I switched to fish oil on the recommendation of one of my drs. If your pain is inflammation based (I'm also in the "suspected autoimmune" as a root cause for pain camp) it might be helpful? It works sort of cumulatively for me, so I have to be careful not to miss a day, but I really noticed the difference when I had to go off it for a week (even staying on all my other meds/supplements) for some blood tests and could barely get out of bed. I still have to spend a lot of time resting/need tylenol for days w a lot of uptime but it's made a big diff for me.

  • I would think that yeah you're covered for the year at least? I'm still super confused by all the marketplace stuff vs. other healthcare plans but I THINK changes would happen after the end of the year. Another thing my doctor has suggested to me is going to local pharmacies (rather than chain ones) and asking if they have some sort of program for people who don't have insurance to get lower cost/free medications. That might expand your options slightly, at least.

  • I especially like the last two paragraphs about how a big part of the problem is framing autism and trans identities as inherently bad and something that needs to be 'fixed.' I really love the parts of the mental health and LGBTQIA+ communities that focus on self-exploration as positive.

    Ugh, just essentially, please can we stop telling other people what their identities are???

  • I found out that one of my anti-depressants has been contributing to my uptick in food issues/OCD, which is not great but is good to know. (also, to have it validated that those two things have been harder to deal with in the past couple months). My psych added another medication to hopefully counteract some of the side effects and I'm hopeful that the next couple weeks will bring an improvement.

    Hopefully getting closer to getting answers from my gyn about my now...five month long? period. Cannot WAIT for it to go away! >< I finally got advice beyond 'just wait it out' this week so that's good.

    Having some personal life stress, so I'm trying to up my gaming time. I really enjoy doing it, but feel weirdly guilty about using up my out of bed spoons/taking painkillers to do something that's purely for fun, so trying to push through that.

    Hope everyone has a good weekend <3

  • Oh no I'm so sorry about the pain flare! Those are the worst :( School/work flexibility stuff sounds exciting though I hope things work out well!

  • I'm starting to adjust to my new pain level and having less difficulty concentrating, which is good. My depression has been flaring up really badly this week, though, and my sis is out of town for 10 days so I'm struggling to get stuff (especially eating ><) done. Insomnia is getting bad again, too, which could mean my thyroid dose is too high or could just be anxiety. Basically just trying to survive until she gets back and things return to normal.

    I guess this is overall a good thing, but I always somehow manage to forget how terrible depression feels when I'm not having an episode. Then when it starts up again, I'm somehow always surprised by how awful I feel.

  • My pain level is still up from where it was, idk if permanently or just for winter or what but I'm hoping I adjust to it soon because focusing has been a challenge. Starting to push myself back into socializing/keeping to a schedule in spite of the increased pain, which has been good for my mental health if hard. My headaches have also come back, which I'm hoping is a combo of PMS and allergies and not meds losing effectiveness. For now I'm just taking lots of tylenol on top of my usual meds, trying to do more mild stretching, and really really hoping I'm not getting a cold (although even that would be better than perma-headaches)!

    I also had to miss therapy for a couple weeks because of the holidays (not to complain, therapists deserve holidays as well!) and I'll be really glad to get back to going bc I struggle coping for more than a week without it.

  • This is the general strategy I follow/find helpful as well.

    I also think one of my goals for this upcoming year is to be kinder to myself and more forgiving of having limits that aren't always predictable, because I tend to guilt myself a lot about 'failing' or falling short of goals.