britt, to random
@britt@mstdn.games avatar

More pokey pokes today … hopefully the last lab tests and vaccines before I get to start on my immunotherapy.

2 week countdown let’s go!

britt,
@britt@mstdn.games avatar

Fun fact: RA doesn’t just affect the joints… and it’s not just an ‘old person’ disease…

GamingWolf,
@GamingWolf@mstdn.games avatar

@britt Yeah... my wifey's got it too. I had to do my due dilligence a few years ago to get her decent medication because their (our nearby clinic's) bureaucratic/technical end was woefully inadequate.

britt, to medical
@britt@mstdn.games avatar

I’ve officially been prescribed biologics.

Phew. I didn’t realized how hard that would hit… I have to keep reminding myself that “the normal average level of pain is zero, not 6-7.”

Now to wait for provincial funding, update some vaccines, and to jump through lots of hoops.

#Medical #ChronicIllness #RheumatoidArthritis

annyr,

@britt Britt, I really appreciate your candidness and openness in sharing your story. I'm rooting for you, as I'm sure are many others!

britt,
@britt@mstdn.games avatar

@annyr 💜 thank you. Sometimes I worry about being too candid, but I’m really trying to share the human side of walking through the world with chronic illness. More visibility is needed and if I can offer some of my energy to help others feel seen, it’s worth everything. ☀️

tomkindlon, to fibromyalgia
@tomkindlon@disabled.social avatar

A cross-sectional study demonstrated significant impairments in attention, memory, and higher cognitive functions among a cohort of patients with and (RA)

https://www.hcplive.com/view/patients-with-fibromyalgia-scored-worse-in-memory-attention-cognitive-function

@fibromyalgia

rolandelli, to random
@rolandelli@sfba.social avatar

I’m taking an Instagram break until after the holidays. You bastards are stuck with me though.

I’m having pain issues and need to self care. (I’ll be seeing my rheumy on the 21st, I can guarantee a switch in meds). I’m also needing to get more support in my life, both emotional and kindness, and possibly house help. But the latter is tricky in this pandemic.

Anyway, I’ll post some art later if I can.

18+ Frances_Larina,
@Frances_Larina@sfba.social avatar

@rolandelli Thank you, for letting us be stuck with you! And for practicing good self care hygiene. I hope the med change helps!

rolandelli,
@rolandelli@sfba.social avatar

@Frances_Larina thanks you! 💐

geographile, to Discord
@geographile@sfba.social avatar

A lot of the community on Twitter seems to have dissipated since Twitter went kaplooey, but the channel is still there. It doesn't seem very active these days, but it's there, and we would love to see you if you have or a illness. Come join us, we're nice people.

https://discord.com/invite/nuh9TTsj




rolandelli, to random
@rolandelli@sfba.social avatar

There is a second research study showing possible autoimmune curative treatment that avoids wide spread immuno suppression in patients.

The previous one was regarding a "reverse vaccine". Are there any rheumatologists or researchers on here that can explain these findings in layperson terms?

Are they both targeting T cells?

https://www.nature.com/articles/s41591-023-02613-z

Frances_Larina,
@Frances_Larina@sfba.social avatar

@rolandelli

This is so encouraging and amazing! I hope it pans out, it could make such a different in some people's lives.

rolandelli,
@rolandelli@sfba.social avatar

@Frances_Larina yes!! I will volunteer if they need patents in America!!

momo, to FFXIV

I'm not the best at #introduction (s) but here goes nothin ​:002blush:​

hoi, I'm mana, also known as momo. I'm an FC leader in #ffxiv and I play on Primal DC. I'm shy, but one of those people who won't shut up once you get to know me. I have a tendency to be introspective/keep to myself when I'm really depressed. I have #cptsd and am #neurodivergent. Also, I'm disabled from #rheumatoidarthritis and #ehlersdanlossyndrome and #fibromyalgia. Most days are good days, but the bad ones are pretty bad ​:blobcat_notlikethiscry:​

wow what a way to open ​:blobcat_nervous:​

umm...I really like indie games, esp. horror ones like #Ib, #MadFather, #TheWitchsHouse, #yumenikki...stuff like that. I'm a big fan of #worldofhorror and #JunjiIto, and I've read most of #KojiSuzuki's works.
I enjoy #lightnovels and am currently reading #urasekaipicnic. I also really enjoyed #kamisamanomemochou. I like #anime but I don't really watch it all that often these days, but there's still plenty on my to-watch list ​:ahrispin:​
I also like #visualnovels but rarely am in the mood to play them lately. some of my favorites have been the #higurashinonakukoroni series and #higanbananosakuyoruni. I also really like anything by #MAGES or #5pb / #nitroplus. #chaoshead and #steins;gate are favorites.

As far as regular video games go, I like #jrpgs, #farmingsims, #touhou & #danmaku games. I have played almost every #neptunia game ​:blobfoxlaughsweat:​ and my comfort game is #stardewvalley

I like modding/coding games so I've been learning #blender and #json to facilitate that. idk what else to say butt hi everyone, thanks for reading this if you did! let's be friends?​:sbahri_question:​

susan87505, to disabled
geographile, to random

I put pictures of my gradually healing knuckle replacement surgery up on Instagram for all y'all weirdos who like that sort of thing.


https://www.instagram.com/p/CuqoY_cuHGi/?igshid=MTc4MmM1YmI2Ng==

ElizabethLeeCo, to random

I woke up Friday morning in slight agony from an RA flare so I've mostly been avoiding any typing 🫠

My thumbs are sort of working now but idk for how long. Which means you need to talk at me RIGHT NOW if you want to get it out of your system 😆

geographile,

@ElizabethLeeCo I've been recovering from hand surgery for a while and it's easiest to use my phone with speech to text, and that causes annoying errors sometimes.

ElizabethLeeCo,

@geographile I've been considering trying that the next time I have a flare. Thankfully, my thumbs usually aren't affected to much so I can text.
I hope you have a swift recovery from your surgery.

geographile, to random

for the Instagram-enabled:

My new phone wallpaper is a reminder of my . A few weeks back, my podiatrist told me that the pain disease damage causes in my feet is only fixable with steroid shots in the short term and surgery that will cost me ...


https://www.instagram.com/p/CtDGZLkJ6K0/?igshid=NzJjY2FjNWJiZg==

casualcatte, to gaming

The last week has been a literal pain thanks to the weather and so I've been spending a lot of time playing which has been an entertaining diversion.

It's interesting to me that even your little pack pony gets stats and abilities. You can eventually turn them into a warpony! Animals like wolves and bears are also capturable to put in your party if you have some Rope.

|| ||

geographile,

@casualcatte I'm glad the rheumatoid disease doesn't affect your gaming. I've had to change types of gaming I do but I still enjoy what I can do.

casualcatte,

@geographile

It affects my gaming plenty, but I take steps to ensure it doesn't ruin it. Like getting a Razer Tartarus was instrumental to saving my hands from cramps and pain in a lot of MMO/RPGs I play.

A game like Wartales is easy on me, because it's mostly point and click.

I enjoy a lot of farm/life sim games because they generally aren't as demanding on my hands.

You just have to find things that fit you and your own circumstances! Best of luck! ❤️

rolandelli, to random
@rolandelli@sfba.social avatar

Having another flare up. Any folks on here? I may have to get on a second drug other than the methotrexate. Naproxen takes care of it but don’t want to take that every day. I feel like my body has let me down. Again. This all started during the rains and then after eating sugar. Gave up the latter.😓

geographile,

@rolandelli I've had med-resistant rheumatoid disease for 22 years, only in the past 4 have I found meds that work.

For folks for whom mtx works, some doctors find that combining it with enbrel or another biologic really helps.

I_Like_Books, to random

"Living in this time of “wellness” can also be challenging for those of us living with a chronic illness. This culture places a heavy focus on personal responsibility that can feel toxic when it is used to shame or blame a person for their chronic illness. How badly do you want to get better? is the message that is commonly used to sell diets, supplements, coaching, etc. I embrace all modalities of treatment for my RA, including holistic treatments, but I have found that I am the most at peace when I am seeking the acceptance stage of grief. When I accept that I am living with a chronic disease and try to make the best of the situation, rather than seeking ways to “heal” or “cure” my incurable disease. "

https://www.huffingtonpost.co.uk/entry/this-is-what-no-one-tells-you-about-having-an-invisible-illness_uk_64468920e4b04997b572d804

geographile,

@I_Like_Books ugh yes

MyrddinEmerys, to random
@MyrddinEmerys@ohai.social avatar

Going to allow myself a moment to whine. Recently diagnosed with and while I wait to get into a rheumatologist so I can hopefully try to get on something control this, it is so frustrating to be in a lot of pain and people just not understanding it. Yeah, my hands don’t look all twisted. Yeah, I don’t look as bad as that person with OA and a trigger finger. But ya know what, I’m exhausted, I feel sick, and I’m in pain, but I look good. Stop comparing me to others.

geographile,

@MyrddinEmerys I totally hear ya. It's been 22 years for me. It used to be that hands got twisted but with modern meds it usually takes years for that to happen if at all. You can feel like you've been pounded with a meat tenderizing hammer regardless.

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