Chronic Illness
- Thursday Triumphs
What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!
I'll try to post this regularly.
My mom sent me a Weckmann for the St Martins feast because we don't have those here.
It's fat and ugly and missing an eye (ugh, raisins, don't like them anyways) and I love it!
- Thursday Triumphs
What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!
I'll try to post this regularly.
With all the election stuff at least we have some good memes again. And on top of everything our government (in Germany) is currently breaking up, which means even more funny memes. Hooray!
- Without Internet I'm Dead
Our internet went down an hour ago and I have to contend with the crappy metered connection in my phone. Really strange feeling how isolated I suddenly am. Took a while until all my family member's phones switched from wifi to mobile.
My laptop, which is my usual connection to the world, is still out. Guess I'll open up a hotspot. Until all my data is gone.
Very humbling.
- Sending hugs to everyone who needs them right now.
We’re going to need to stick together and help our most vulnerable if we are to survive the next four years.
- Thursday Triumphs
What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!
I'll try to post this regularly.
I got a pedicure yesterday because the cornea on my feet was getting too thick. So now I can actually feel the ground beneath my feet on the rare occasion that I do get out of bed.
- Is anyone else worried about the damage this man could do to the health system when Trump gives him an influencial role?
I feel like if he gets his way I’ll be prescribed sunshine, exercise, raw milk, and whatever drug a pharmaceutical bribed him to sell, instead of the immunomodulators I really need.
He’s like a mix of your uncle who thinks your chronic illness would go away if you “go outside and get some sunshine, stop being so negative, and eat more xyz” and your aunt who believes “acupuncture and supplements will cure you and all other medicines are a conspiracy”.
- Thursday Triumphs
What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!
I'll try to post this regularly.
For me, we're getting pizza today because my caretaker is too tired to cook. Sure it's not healthy and expensive. But it's pizza! Woohoo! And as a bonus it's Hawaiian.
- How do folks here handle the feeling that they're just waiting, not serving a purpose, and being a burden on their family as well.
I wake up, I eat, I read a little, I go back to sleep. I wake up, I eat, I read a little, watch a show with my wife, go back to sleep. I try not to eat more than 1500 calories because my activity level is so low I'll get fat if I go above that.
What's the end game here?
EDIT, FOR CLARITY:
I can't work. I need to sleep like 14 hours a day. I'm exhausted all the time. I get fatigued after about 5 to 10 minutes worth of any labor, including things like going upstairs or loading a dishwasher. My hands shake all the time, to where I can almost not clip my own fingernails anymore.
I work a job for years and retired from it there's plenty of money coming in. I just find myself in a place now where this chronic, undefined illness has taken over my life.
- I finally have a job where my bosses and coworkers understand what chronic illness is
I've been chronically ill my whole life. My job was very accommodating while I searched for actual answers. This is the first job I've had where I can actually take time to care for myself without getting in trouble.
Anyway, I finally got an answer to what my illness is after desperately searching for 20 years. I have lupus, specifically SLE. I always suspected it, but rheumatologists never took me seriously until now. I have to make a 2 hour trip, one way, to see my doctor, but it's worth it.
I sat down with my boss after getting my diagnosis and discussed how the disease could potentially impact my life and working ability. I discussed every important aspect of it so my boss and I are on the same page. He was so supportive and kind and I cried because it is so amazing to be supported like that in the workplace.
I truly hope the rest of you can find/have an employer like mine.
- Only time I feel good
cross-posted from: https://lemmy.world/post/20133691
> if god didn't want me to be cozy then why can I turn myself into a burrito?
- What is your approach to medical appointments for chronic illness if you are a medical professional yourself? (Or if you have a very good understanding of your disease)
I'm currently a medical student and a licensed EMT with a chunk of professional experience in medicine as well as having multiple chronic illnesses, a couple of which are very stigmatized. I've kind of settled into conducting my appointments like I'm presenting a patient to an attending physician. I still use I/me/my/mine and describe things from my perspective, but it's still a rather....professional(?) discussion. I feel like it helps me approach the conversation in a productive way, and my physicians seem pretty receptive to my suggestions for treatment and testing...but it also feels like I'm dehumanizing myself a bit.
The biggest issue I've had tends to be with nurses/NPs/admin/etc when I call and say "hey, I'm having these weird symptoms and I think this is the diagnosis, can you get me in to see the physician?" and they sort of short-circuit almost because they seem to be in the habit of exerting their own judgement about a situation.
I recently had a nurse try to punt me back to my primary care physician because the specialist was out of the office and she wouldn't escalate to the physician on-call because she didn't understand that I had already talked to my primary care physician and she said she wasn't equipped to deal with it. (This was an issue that has the potential to be life-threatening in a matter of days that, fortunately, I knew how to kinda sorta manage on my own for a little bit.)
- Tips for chronic pain
I have recently discovered that I am hypermobile but social anxiety and the pain prevent me from going to a doctor (also I don't trust them and they scare me) Do you have any tips on living with chronic pain? Anything from over-the-counter drugs and physical aids to tips for everyday tasks I know I'll have to talk to a doctor someday but in the meantime I'd like to be able to survive lol
- Russian "information war" campaign on the US, trying to convince voters that disabled people have too many privilidges
The full document entitled “Guerilla media campaign on the United States” seized by the FBI from Russian government sources, is available here: https://www.justice.gov/d9/2024-09/exhibits_9a_and_9b.pdf
If you’ve been noticing more and more ableist content online like I have, this could explain it.
- Sometimes it isnt an option. But sometimes it's a lifesaver.
cross-posted from: https://slrpnk.net/post/13026188
> People need to remember this.
- Antibodies From Long COVID Patients Provide Clues to Autoimmunity Hypothesis > News > Yale Medicinewww.yalemedicine.org Antibodies From Long COVID Patients Provide Clues to Autoimmunity Hypothesis
Promising new research supports that autoimmunity—in which the immune system targets its own body—may contribute to Long COVID symptoms in some patients.
cross-posted from: https://lemmit.online/post/3641151
> ##### This is an automated archive made by the Lemmit Bot. > The original was posted on /r/cfs by /u/shallah on 2024-08-09 23:12:51+00:00. > *** > The study could also help researchers create diagnostic tools for evaluating which patients have Long COVID induced by autoimmunity so that doctors can identify who is most likely to benefit from treatments such as these. > > Iwasaki plans to continue researching why and how autoantibodies might cause Long COVID, as well as conduct randomized clinical trials on promising treatments. She is also conducting similar antibody transfer studies in other post-acute infection syndromes, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
- Mask Bans Are an Insult to Disabled People and Protesters Alikewww.teenvogue.com Mask Bans Are an Insult to Disabled People and Protesters Alike
The bans threaten disabled people and protesters alike.
cross-posted from: https://slrpnk.net/post/11952906
- ⚠️💗 List of health communities on Lemmy (Last update: Sept 1; Count: 102)
cross-posted from: https://lemmy.world/post/396561
> Last update: Sept 1; Count: 102 > > This is a continuously updated list of communities dedicated to health, or specific diagnoses, from all around the Lemmy network. > > There are some disclaimers and notes below the list. Check them too. > > ========== > > How to use links? > > If you're having problems with some links (such as a "community not found" message), see the FAQ on this post. I had to remove the dual links due to the character limit. > > ========== > > > ~General Health & Medicine: > > > !medicine@mander.xyz > > !health@lemmy.ml > > !medicine@kbin.social (1) > > !health@exploding-heads.com (2) > > !health@midwest.social > > !medical_advice@lemmy.world > > > ~Disabilities & Accessibility: > > !disabled@lemm.ee > > !disability@feddit.uk > > !disability@beehaw.org (2) > > !deaf@lemmy.world > > !deaf@kbin.social (1) > > !main@rblind.com > > !blind@lemmy.world > > !eyetriage@lemmy.world > > > ~Health Conditions: > > > Autism > > !autism@lemmy.world > > !autism@lemmy.ml > > !Autism@kbin.social (1) > > !autismexperiences@lemmy.ml > > !autisticpride@infosec.pub > > !autism_uk@feddit.uk > > !womenwithautism@lemmy.world > > !autisticandadhd@lemmy.world > > > Chronic Fatigue Syndrome / Myalgic Encephalomyelitis > > !cfs@feddit.de > > !mecfs@kbin.social (1) > > > COVID-19 > > !coronavirus@lemmy.ml > > > Crohn's and Ulcerative Colitis > > !crohnsandcolitis@lemmy.world > > > Diabetes > > !diabetes@lemmy.world > > !diabetes@lemmy.frozeninferno.xyz > > !t1diabetes@lemmy.world > > > Ehlers-Danlos Syndrome > > !ehlersdanlos@lemm.ee > > > Hyperhidrosis > > !hyperhidrosis@lemmy.world > > > Kidney Disease > > !kidneydisease@lemmy.world > > !kidneydisease@kbin.social (1) > > !dialysis@lemmy.world > > !dialysis@kbin.social (1) > > > Neurodegenerative Diseases > > !neurodegdissupport@lemmy.world > > > Neurodivergence > > !neurodivergent@discuss.online > > !neurodivergent@sh.itjust.works > > !neurodiversity@lemmygrad.ml > > !neurodivergence@beehaw.org (2) > > !neurodivergente@bolha.social > > > Pain, Migraine, Fibromyalgia > > !chronicpain@lemmy.world > > !fibromyalgia@lemmy.world > > !migraine@lemmy.world > > !pain@lemmy.world > > > TMJ > > !tmj@lemmy.world > > > Transplants > > !transplant@lemmy.world > > !transplant@kbin.social (1) > > > Women's Health: > > !menopause@lemmy.world > > > ~Mental Health and Addiction: > > General > > !mentalhealth@lemmy.world > > !mentalhealth@lemmy.ml > > !mentalhealth@lemmygrad.ml > > !mentalhealthsupport@midwest.social > > !antidepressants@slrpnk.net > > !appliedpsychology@mander.xyz > > !therapy@lemmy.world > > > > ADHD > > !adhd@lemmy.world > > !ADHD@kbin.social (1) > > !adhdtalk@lemmy.world > > !adhdwomen@lemmy.world > > > Addiction and Support > > !sobriety@lemmy.ca > > !stopdrinking@lemmy.world > > !stopdrinking@discuss.tchncs.de > > !stopsmoking@lemmy.world > > !quittingsmoking@lemmy.world > > !recovery@lemmy.world > > !fafopwa@lemm.ee (Friends and Family of Persons with Addiction) > > > Anxiety > > !anxiety@lemmy.world > > !socialanxiety@lemmy.blahaj.zone > > > Avoidant Personality Disorder > > !avpd@sh.itjust.works > > > Bipolar Disorder > > !bipolardisorder@lemmy.world > > > Borderline Personality Disorder > > !bpd@sh.itjust.works > > > CPTSD/PTSD > > !cptsd@lemmy.ml > > > Depression > > !depression_now@lemmy.world > > > Men’s Mental Health > > !mensmentalhealth@lemmy.world > > > ~Other > > ========== > > !dangerdust@lemmy.world (Dangerous Dusts, Toxins and Occupational Hazards) > > Healthcare Professional Communities > > !healthcareworkers@lemmy.ml > > !ems@lemmy.world > > !ems@lemm.ee > > !medicine@lemmy.world > > !pharma@lemmy.world > > !nursingUK@kbin.social (1) > > !radiology@lemmy.world > > > Healthy Eating: > > !healthyfood@lemmy.world > > !cheaphealthyfood@lemmy.world > > !cico@lemmy.world (Calories In, Calories Out) > > !EatCheapAndHealthy@kbin.social (1) > > !nutrition@mander.xyz > > !loseit@discuss.tchncs.de (LoseIt: Lose the Fat) > > > Healthy Lifestyle: > > !bodyweightfitness@lemmy.ml > > !sauna@exploding-heads.com (2) > > !soakingtub@exploding-heads.com (Ofuro Japanese Soaking Tub) (2) > > !longevity@mander.xyz > > !sports_science@mander.xyz > > > > Drugs (Warning: Some posts may promote drug use.) > > ::: spoiler spoiler > !drugs@lemmy.world > > !drugs@sh.itjust.works > > !drugs@exploding-heads.com (2) > ::: > > > > Satire and Memes > > !adhd@lemmy.dbzer0.com > > !aspiememes@kbin.social (1) > > !depression_now@lemmy.world > > !Evil_autism@kbin.social (1) > > !neurodiversimemes@lemmygrad.ml > > > ========== > > > Notes: > > - I'm not vouching for any of these communities, check at your own discretion. Some of them are abandoned or inactive, so if you see one without activity that might be interesting, consider bringing it back to life and crosspost here. Communities with no content whatsoever aren't included. > > - Work in progress - let me know if you know of new communities that aren't in the list, or if you have other feedback. > > (1) Kbin is a different network from Lemmy. Interactivity may be limited or delayed. > > (2) These instances aren't federated with lemmy.world. To interact, you need to have an account on an instance that federates with them. > > Important: Some instances may gravitate towards politics or philosophies different from your own. Inclusion of a health community of any instance does not mean endorsement of that philosophy.
- So glad I now have pee-bottles by my bed
cross-posted from: https://sh.itjust.works/post/22811482
> The struggle is real
