#and having to deal with my autoimmune disease/lupus

[covid-safer-hotties]

Also preserved in our archive

By Amy Norton

The virus can trick your body into attacking itself.

Brittany Underwood was 37 when she was hit with COVID early in 2021. Her case was mild, and, like the mom she is, she took care of everyone else because of course the rest of her family had it too. It wasn’t until a couple weeks later that she started to feel lousy—wiped out, constantly thirsty, and dealing with weird issues like blurry vision in one eye.

When Underwood brought those symptoms to her doctor, he decided to run some blood tests. “My blood sugar was through the roof,” Underwood tells SELF. It was so high, in fact, she ended up in the hospital that same day, where they handed her a diagnosis that would change her life: type 1 diabetes.

This autoimmune disease is most often diagnosed by the age of 14—it used to be known as juvenile diabetes because it’s the type that most often hits kids, teens, and young adults. Because Underwood was approaching 40, her case was unusual. But her doctors raised a possible explanation: She’d just had COVID, and they suspected the infection might have triggered her diabetes.

Nearly four years later, we have a lot more than suspicions. In fact, the pandemic has been blamed for a spike in type 1 diabetes. New cases in kids and teens jumped up 16% in the first 12 months of the pandemic and 28% in the following year. (Before 2020, the typical increase was 2% to 3% per year.) And it’s not just type 1. Other autoimmune diseases—including rheumatoid arthritis (RA), psoriasis, and lupus—went up too. Exactly why that happens isn’t fully clear, Sonia Sharma, PhD, an associate professor at La Jolla Institute for Immunology, in La Jolla, California, tells SELF. “But,” she adds, “we do have some clues.”

When your immune system turns on you The idea that COVID could set off a chronic autoimmune disease might seem out there. But, Dr. Sharma says, “it’s not a new concept at all.” Autoimmune diseases are caused by a misguided immune system attack on the body’s own healthy tissue. For that to happen, a perfect storm of conditions has to come together. Genes definitely matter, Dr. Sharma says, since autoimmune diseases tend to run in families, and studies have tied certain genes to higher risks of the conditions. (Underwood says she has a family history of autoimmune diseases.) Your sex assigned at birth matters too: Autoimmune diseases are way more common in women than men, Dr. Sharma notes (though anyone can get them).

But those kinds of risk factors aren’t enough on their own. People have to be exposed to one or more “triggers” that tip the immune system into self-attack mode. And microbes are among those potential sparks, Akiko Iwasaki, PhD, professor of immunobiology at Yale School of Medicine, tells SELF.

Studies have linked a slew of infections—including super-common ones like the flu, cytomegalovirus, and Epstein-Barr virus—to various autoimmune diseases. Epstein-Barr, which eventually infects nearly everyone and is usually no big deal, may be the prime example: A recent study found that the infection likely plays a role in most cases of multiple sclerosis (an autoimmune disease that destroys the protective covering around nerve fibers).

There are different theories on exactly how it happens, but Dr. Iwasaki offers a (relatively) basic overview. First, she says, it’s a little known fact that everybody has some number of immune system cells that are “autoreactive,” meaning they’re capable of going rogue against you. Thankfully, they usually don’t. But in certain people, under certain circumstances, an infection might “activate” those autoreactive immune cells.

“Once they’re activated,” Dr. Iwasaki explains, “they can divide and travel to different tissues in the body, and may start to attack your own cells.” All of that, she adds, is more likely to happen when an infection generates lots of inflammation in the body. An ordinary cold probably won’t do that, but COVID might.

How big is the risk? Even though it can seem like we’ve been living with COVID forever, it’s still a very new thing. Because of that, Dr. Sharma says, it’s only recently that studies have been able to turn up strong evidence that the infection does trigger autoimmune diseases.

That includes this 2023 study of close to 4 million Americans. It found that people diagnosed with COVID had higher odds of developing autoimmune diseases over the next six months, versus COVID-free people. On average, they were roughly three times more likely to be diagnosed with conditions like RA, lupus, psoriasis, celiac disease, and type 1 diabetes.

Really important to point out here: Although three times more likely might sound huge, the risk of any one person developing an autoimmune disease after COVID is still low, Sara Martin, MD, medical director of Vanderbilt University Medical Center’s Adult Post-Acute COVID Clinic, in Nashville, tells SELF.

Another 2023 study, published in Clinical Rheumatology, helps put things into context. It found that of 565,000 people with COVID and no history of autoimmune disease, 1% were diagnosed with an autoimmune condition over the next 3 to 15 months. That was 43% higher than the rate among people who didn’t have COVID during the same period. Although that sounds like a lot, it was an increase from roughly 11 to 15 cases per 1,000 people per year. So…not a huge amount, but not something to dismiss either. And if you’re one of the unlucky people who does develop an autoimmune condition, that’s a heavy toll.

“All of a sudden I had this huge life-altering thing,” Underwood says of her diabetes diagnosis. People with type 1 have to take insulin injections every day to stay alive. So Underwood was forced to quickly learn the intricacies of carb counting, adjusting insulin doses, timing meals to avoid dangerous blood sugar drops—and managing them when they did happen. Time and experience, as well as connecting with other people with type 1 diabetes, have taught Underwood a lot. “But I’m still learning, three years later,” she says. “It’s just a constant thing. You can’t take a day off.”

Is there a way to protect yourself? At this point, many of us have had COVID more times than we’d prefer. So does your immune system get used to the virus, and maybe make an autoimmune reaction less likely?

Unfortunately, Dr. Iwasaki says, there’s reason to believe the answer is no. That’s based on what researchers have learned about long COVID, a collection of symptoms like extreme fatigue and brain fog that hits many people post-infection. Prior bouts of COVID do not seem to lower the odds of developing long COVID (and the risk might even go up each time you’re infected). Long COVID, Dr. Iwasaki notes, is different from autoimmune diseases like type 1 diabetes and RA because the cause isn’t clear and may be due in part to direct damage caused by the virus. But she and other researchers have found that autoimmune reactions to COVID infection may also be behind long COVID symptoms, at least in some people. “I think that’s one clue that reinfection would not lower the risk of autoimmune disease,” Dr. Iwasaki says.

Okay, now for the good news: COVID vaccination might be protective. For one, Dr. Martin says, research shows that vaccination can lower the risk of long COVID, and the more vaccine doses you get, the greater the protection.

There’s also this large study published last year by researchers in China, which found that although COVID was associated with an increase in many autoimmune conditions, those risks were lower among people who’d gotten at least two COVID vaccine doses, versus unvaccinated people.

It’s “absolutely” plausible that vaccination helps, Dr. Sharma says. Vaccination, she explains, primes your immune system to stop the COVID virus “at the front door”—your respiratory tract—so that it can’t hitch a ride around the body, churning up inflammation and, potentially, an autoimmune reaction. And while people can develop autoimmune disease after a mild case of COVID (as Underwood did), research suggests that the odds might be substantially greater if you become severely ill.

“We already recommend vaccination for everyone,” Dr. Martin points out. “It reduces the potential for severe COVID, and we know it also reduces the risk of long COVID.” If you’re worried about autoimmune disease (say, because you have a family history of them), Dr. Martin says that’s one more reason to stay up-to-date on your COVID shots.

[mothfinite]

a message for my fellow chronically ill/physically disabled selfshippers:

your f/os love you even if you have to go through a lot of procedures/doctors appointments/labs

your f/os love you even if your symptoms are considered 'gross' or 'weird'

your f/os love you even if you have a 'gross' condition or one thats made fun of

your f/os love you even if you use mobility/disability aids

your f/os love you even if your spoons are low and makes things like personal hygeine hard to manage

your f/os love you even if youre struggling with pain and dont have energy for anything more than existing

your f/os love you and will always be there to support you and take care of you if needed, they love you for all of you ♡

pr0ship/c0mship dni

[warlock-enthusiast]

some health stuff/updates ->

It is still not sure what is going on with me! My neurologist is now testing me for every autoimmune disease (from Lupus to HIV) and MS is also still a possibility. Had to leave so much blood there. It could also turn out to be a silly one time thing that no one knows how to deal with.

Today my eyes got checked again and my left eye is still so much slower than the right one in terms of feeding information to my brain. Like my eyes are in perfect condition, but there is a chronic inflammation back in the brain... so, my brain is to blame for that. I still have the same strange visual thing going on, but I hardly notice it during the day. Heat makes it so much worse though.

On a good note: I really like my Doc and the nurses. All of them are very nice and gentle and also make silly jokes. Seldom had such a good experience with a Doc.

[majulians-groupie]

HEEYYY yall this is my first ever headcannon post,I know I am super late to the fandom,I haven't been here since middle school but I replayed the game again and I MISSED MY DUMBASS CHAOTIC THEATER KID DOCTOR🥺✨️✨️

•Sooοο..I am having a lupus flare and I lowkey need this so yeah this is for all my wonderful people that deal with chronic fatigue/pain/illnesses in general,we got this babes😭✌️✌️

 

♡Julian,and Asra with an MC that deals with Lupus♡

•

✨️🐦‍⬛✨️🐦‍⬛Julian✨️🐦‍⬛✨️🐦‍⬛:

Well,one could definetely say fighting the devil,saving the world, AND learning that you died but been brought back to life is more than enough to make a healthy person stressed and tired.Well...let's just say than in your case you needed a minimum of a few days of a well earned break to deal with your after-chaotic-route-events flair.

That's when you first made a real discussion about that autoimmune disease you were telling him about,(he was trying SOOO hard to learn more,always asking you details as discreetly as he could ,but you wanted to have a proper discussion with him about it,and the events of the route kinda got in the way)

•Good thing about him being a doctor:He generally knows what Lupus is and understands how it can affect you in your everyday life,so you don't have to explain much to him.Additionally, you wont have to worry about scaring/shocking him when it comes to your symptoms( 95% he has heard of them before,not that it still doesn't kill him  everytime he sees you going through them tho)

•Bad thing about being an anxious doctor is: HE ADORES YOU TO BITS,so he freaks a little bit out at first,exactly because he understands the seriousness of the situation

He tries to appear calm so as not to not freak YOU out (he knows that would only be worse for your health,since anxiety and autoimmune diseases are a really bad pair),but you could swear you could hear the gears up in his brain overworking themselves

•Darling...I had no idea (mesmerized that you were kicking the devil's AND lupus' ass at the same time)

•Let's be real here though..we are talking about the person that successfully amputated another person's arm as a teenager and saw the importance of blood in diseases WAY beyond his time.This man is canonically a genius,so yayy you have the best healthcare professional at your service (shall I remind you of the little detail that he also ADORES YOU TO BITS and would work his ass off, just at the hope of discovering something that would provide some improvement/relief on your symptoms)

•He went as far as to consider changing his medical field,but that's where you had to overstep and gently remind him the boundaries between him being your partner and him being your doctor.

You explained to him that there is no reason for him to abandon his life's work (blood researching) and that you would hate to see him leave from a field  he is really passionate about, just to make his life's goal and obsession around you

•He begrudgingly sees the reason behind your words and wont insist,but won't stop studying medical books,staying up to date with latest medical researches,and generally knowing almost as much about the disease as a rheumatologist does.

•However,It takes him a while to find the balance between caring for you as a partner,and caring for you as a doctor.He is constantly doting on you and being overprotective,because he has knowledge of every single thing that could go wrong.If you are on immunosuppressants,flu season makes him PARANOID.He can get a little bit overbearing at times,but you can't get mad at him because you know that only happens because he cares so deeply about you.If he gets too much for you to handle,you have a calm conversation where you explain to him that he needs to trust you more and that you know how to take care of your own body and it's needs.

*-Honey you don't need remind me to take my pills every 30 minutes,and me sneezing once does not mean I have the flu!*

•He finds the silver lining by prescribing to you *-all encompassing- warm,soft hugs and a thousand kisses*.Even though he is usually the little spoon,if you are in pain,he cradles you in his embrace,humming pirate tunes to you,his chin resting on your hair to make you calm and get the rest you need (ironically,he is very strict about your sleep schedule,which you make sure he follows as well,overall a win-win situation)

•If and when you need an arthrocentesis,he will insist on doing it himself just to be sure (even though doing a procedure like this on a loved one would stress him the fuck out).It's not that he doesn't trust your doctor,it is just that he hates not being in control of important situations,let alone one that has to do with your health.If the rheumatologist does not give in ,he will politely ask to be in the room with you,both to provide emotional support and calm his nerves by making sure everything's going well.

*Unwillingly creeps the rheumatologist out by watching at him like a hawk,his grip on your arm changing from soft to trembling to almost painful, *he feels so bad about it afterwards*

•He makes sure your house is always stocked up with every medicine you may need (ofc you have triple of every box),a cooling area if you are prescribed shots,top quality mobility aids(joint braces,bandages etc) and everything else you use to assist your symptoms

•Pepares you warm baths for joint pain relief with nevivon's best salts (and constant excursions on nevivon's springs if you wish)

•Generally amazed at how you well manage and handle everything about your disease.He has seen enough on his adventures to know how to judge a real badass,and you are definetely one in his book

🦊🔮🦊🔮Asra🦊🔮🦊🔮🦊

•Since you were so close,you had told him about your disease way before the events of the game and he admired you so much for your strength,his heart breaking every time you have a flair.He is always able to see through your mask,when you keep trying to hide the fact that you are in pain.

•However unfortunately,seeing your friend/friend with tension/lover (depends on how  you imagine your MC's past with Asra) going through something and taking care of him while he is non-verbal and not remembering anything about the world is 2 total different things.

•Things were hard at first.When you first came back,you were constantly stressed,overwhelmed and generally terrified.This induced a lot of flairs,which was also something you couldn't understand but had to process.He would know you would experience a flair/symptoms by either seeing you sleeping unsually much,or at worst finding you having an anxiety attack or tearing up because you would have some sort of new pain that you couldn't understand how  came to be.He would hold you in his arms,whispering sweet nothings until you calmed down,and then he would patiently try to understand where it hurts and how he could help you.

•Had to basically research everything about the disease from the start.He did the mistake of trying to not involve any doctors because he didn't know how to explain the situation of you being at that state.However, seeing he could not help you with only remedies and magic, he found a rheumatologist he trusted and told them that you suffered amnesia from a spell that had gone wrong,never dwelling into the subject.

•If you are going through a mild flair that allows you to go through your day,he will randomly come and hug you from behind,kiss your cheek and ask you if you are ACTUALLY aware of how strong you are.

•Never one to mansplain you about your disease,but he can get really annoyed if he sees you unnecessary overworking yourself

•It actually was the reason of the first  real arguement you had as a couple.

*-Sweetie,I love you so much,and I am so grateful for your love and concern,but you can't just tell me that you know better than me about how much I can take

-*sighs*

I am just telling you that you don't know how much toll something can have in your system.

-I happen to know my own body,thank you very much

-I just don't want to see you in pain!!! *Snaps,visibly upset,since he knew how bad a flair can be from back when was taking care of you*

-Why don't you take one of your little trips to save yourself from the burden?

*Generally hurt and guilty because of the times a flair happened midwhile he was gone*

-I...*sighs and leaves the room with you realizing you took it too far*

Since you both have valid points,you end up calmly talking things out,you agreeing to not push yourself to the limits ,and him making less and more discreet interventions.

•If he knows something,is how to make an environment relaxing.Your home is full of soft pillows,blankets and candles,ready to create the perfect atmosphere for you to relax when necessary.He also taught you how to medicate to regulate strong negative emotions to limit them from triggering your symptoms.

•Firm believer of the fact that magic and science can be used together when it comes to healing.Teaching you some very useful pain relieving spells,cooling spells for when your joints are inflamed, and recipes for many herbs and homemade remedies for any vitamin deficiency caused by your medication

•His cooking is the only food that is still tastes good after cutting salt because of prednisone.He knows how to use  spices,you could barely tell the difference.

•Generally seeing the process you made,going full independent like you used to,never letting your pain take your spirit down and fighting lupus off like champ (FUCKING SAVIN THE WORLD)makes him the proudest person alive,secretly tearing up when he thinks about it.

So...

That was it guys,It was a little longer than I expected but this concept hits close to home so kinda had a lot to say.I wanted to have a Nadia in this post as well,but her headcannons lowkey turned into a one-shot,so I will post it separately.I hope you liked it🩷🤍.

✨️Feel free to ask me for headcannon ideas you would like to see✨️

Eva♡

[221bluescarf]

I think my friend is having a hard time with the concept of having persistent and debilitating symptoms despite treatment. They keep questioning if I should be happy with my care, suggesting I find a new doctor, telling me to not give up. Friend, I have seen like 8 psychiatrists and have been adjusting medications for the last 10 years. I've been on my current meds for a year and it's going really well in some ways but not in other ways. Ways that I'm told I'm just going to have to learn to deal with. Plus changing meds is so hard and I don't want to do it again ⁠—not to mention it might make things worse.

She brings up those rare stories of people who were diagnosed with schizophrenia and other disorders for years until it was discovered they had some sort of neurological problem or autoimmune disease instead.

I believe those stories but the thing is, in those stories they were completely treatment resistant. I have a decent response to meds. My episodes are less extreme, my baseline is better, and my bad times are shorter. Managing my stress has helped a lot. Things still get bad sometimes but I feel like I'm doing the best I can.

Dude I'm tired. I don't want to ask to see a neurologist or beg for special blood tests. I have no reason to believe I don't legitimately have a psychiatric disorder and not lupus or something

I'm not necessarily giving up but sometimes there has to be an element of acceptance. Otherwise I'd drive myself crazy (forgive the phrase). After accepting things will never be perfect, I feel less hopeless. I feel like I can achieve some level of contentment. If I keep fighting so hard to eliminate my symptoms and they *don't* go away, I'll never be happy. I'll keep hating myself for not achieving more. I'm not saying I'll never try another med or make changes to get better, but I'm ok working with what I've got. Is that giving up?

Is accepting living with my parents giving up? Is staying on disability giving up? Is not trying every single treatment on the market and going back and forth and having unknown side effects giving up? is not asking my doctor to do lots of tests that they won't think I need and asking them refer me to a neurologist giving up?

[the-arcana-headcanons]

Heyy!I had a tumblr break cuz uni and work have been eating me alive,so I am currently trying to work out my writer's block.To get in the mood,I would like to ask for your matchmaker abilities and choose smb out of the M6✨️🩷

Welp,I am a queer girl (not good on labels tbh😂),mediterannean skintone,light brown eyes and light brown hair with honey highlights (that's the best description I could give sorry hehe)

Naturally I am an ambivert.When I am in a good mood I can get really social and I love humor in conversations it literally fixes my day.Usually the energetic one in groups in which I feel comfortable but I also value serioussness and deep talks and in one to one relationships.Can yap endlessly about any topic,I think however that for some people,that can be too much.

I have been told to be the therapist friend🤠, however mental health struggles and lupus, my autoimmune disease (invisible illness team yayy) can get the better of me sometimes,so there are moments where I get more introverted and need sometime to cool off from overthinking.I have had huge trouble with social anxiety,but I have learned to deal with it.Its a struggle,but I have made huge progress and I keep trying

I hate arguements and when tensions go high.I believe that if two people really care about eachother,wether that be friends,family,or partners,everything can be solved with civilised dialogue and respect.As you can imagine,conflict is not my strong suit hehe

I study architecture,and for a hobby I do theater classes,and ballet.Home hobbies are sketching, and writing,wether that be fics about my fictional crushes👀👀 or lyrics to help me vocalize my issues.

Rock music is LITERALLY my long lost dream.

That's all,I hope I didn't come off as a narcissistic for writing so much about mee.

WAITING FOR YOUR WISDOM DEAR MATCHMAKER🤌

labels don't matter actually I just use them to know whether to match someone with the boys or the girls or both, but you said M6 so both it is

also don't feel bad for writing so much! the more people write in their requests the more detailed my matchups can be!

anyways, Julian!

Julian prefers to be in smaller groups, really preferably just the two of you, and he loves going back and forth between fun silly conversations and deep serious ones too. Julian would love your yapping, yap away, he's a very good listener. Although he does get a little spaced out sometimes just staring at you and thinking about how beautiful you are and how lucky he is and how he doesn't understand how he deserves you and then he has to awkwardly ask you to repeat yourself. Julian definitely is in need of a therapist friend sometimes but he also would be your biggest supporter when you aren't feeling as well. He'd let you take his bed in Mazlinka's little cabin and he's bring you special medicinal soup and give you lots of space to feel better. Or he'd stay and just cuddle or be there as a comforting presence if you wanted him to. Social anxiety isnt a problem for him, he's mastered the art pretending he's confident, so if you ever shut down socially he can handle it for you. He'd also be so supportive of helping you work on and improve it, it's like acting and he's great at that. He doesn't like conflict either, arguments and tension make him spiral and isolate himself, so he is not one to jump to causing tension. He may have a hard time communicating sometimes but he wants to and he tries to. He'd be so fascinated with your knowledge on architecture, whenever you'd be walking around he'd point out buildings and things and ask what you think about them. He also LOVES that you do theatre, he fucking adores theatre, he would love to take you to shows. He would encourage your sketching writing so much, he'd want to watch if you were okay with it, but he wouldn't mind if you weren't. He'd always be asking to look at your finished works too

[wolfsbane-and-nettles]

I have a feeling doctors in my area are just not great. For many reasons. One that just flabbergasts me every time is that after diagnostic things like an endoscopy and bloodwork they proceed to ask me if I feel better and when I say no they tell me it all came back okay so am I sure and then when I say yes I'm sure they get snippy with me.

If you have had diagnostic tests for health things, do your doctors ask if doing the test or the results of the test make you feel better?

*Asks are for fun, no pressure.

Oh boy, do I feel this on a personal level. 100% yes, this has happened to me.

So, I have celiac disease, and was diagnosed about sixteen years ago, when I was eleven. In seventh grade I came down with strep throat, and it "attacked my stomach", which brought out the celiac disease. (It's been so long that I truly don't remember how the doctor worded it, so that's my short paraphrasing of a blurry memory.)

Before that, I was a very healthy and active child...but when I recovered from strep, I still couldn't hold anything down. I was out of school so often, going to my pediatrician all the time, and eventually going to the hospital to see specialists about it. Blood work showed absolutely nothing wrong with me (maybe low in electrolytes and calcium.) so the doctors gave me a kids book called "Be The Master of Your Pain" or something.

They were convinced I was faking it to get out of school and have attention. It took so long for anyone to believe me. Any time I went to the doctor or specialists they'd request bloodwork, and when the results came back would ask "hey, you feeling better now?" Ummm...no? Obviously not if this is my fourth month of random blood tests?

Finally, I went in for a endoscopy, had a biopsy and, wouldn't you know...I had celiac disease! I went under fully thinking that I was faking it for attention because they had convinced me of that. Instead, I was right. Something was wrong.

I was then put on a gluten free diet, which was really hard sixteen years ago (definitely easier than twenty or more years ago, but still way harder than it is today) and after a week, I had already started feeling better.

It was a really formative time for me, and ruined a lot of the trust I had in doctors for a good amount of time. I'm still very skeptical of going to doctors because of how they waved off my pain when I was a child. Blood tests don't show everything. Endoscopies don't show everything. Just because it comes back "normal" or "fine" doesn't mean anything. How many autoimmune conditions don't show up unless your tested during a flareup, like Lupus, for example.

I still have chronic pain to this day, getting worse by the year, but I no longer go to doctors to help with it if I can avoid it. The common cold or a flu? Sure, hit me up with those meds, doc. But when something else feels wrong, I try to deal with it on my own simply because of those experiences. You know your body, you know what feels right and what feels wrong. Don't let doctors confuse you or make you doubt yourself!

[livingwithlupus614]

Weight gain is a known possible side effect of some lupus medications, especially Prednisone. I take prednisone daily and have the notorious “moon face” that this medication is known to cause, which can really affect my self-esteem sometimes. This poor woman has the world bullying her over an unavoidable consequence of the meds she takes to keep herself alive and that is despicable. I am grateful that Selena Gomez uses her platform to spread awareness about lupus, so it really hurts my heart to see her getting picked for her weight, especially since it comes from her taking care of her health by taking her meds 💜🦋

[bluegoblinfox]

Lupus?

I have a lot of symptoms which match with lupus. I've had lots of infections this year...8 so far.

I found out yesterday that my mum had a positive ANA (anti-nuclear antibodies) blood test in the 1990s and again in early 2000s. Docs haven't really followed up on this though.

So today I've got put on my big girl pants and sent a message to my GP surgery with all of my symptoms and some pics of rashes and white fingers. I've done this in hope that I am not blown off and told I'm just stressed or anxious.

Like I am anxious about my health because I feel like shit and I've had 8 infections this year. EIGHT!

So I think my anxiety is founded and proportional to the issue.

If they don't offer me an ANA I'm going to pay for one next year. To rule out autoimmune issues if nothing else.

I just can't deal with more medical gaslighting. After being told last time I raised this it was all because I was stressed.

If anyone's interested here are my symptoms:

* Hair loss

* Fatigue (debilitating)

* headaches and migraines

* Joint pain and stiffness and inflammation

* hearing loss

* dry gritty, itchy eyes (in the middle) which water at the edges.

* rash on checks and nose and sometimes chin

* skin which goes red, then pink and then loses pigment although. Leaving white patches.

* Serum creatinine levels at the highest reference point or just over. Have been for over a year.

* stage two liver disease

* cardiomyopathy

* digestive problems

* three recent UTIs

* One recent skin infection

* three recent respiratory infections

* one recent ear infection

* one abnormal ESR recently

* one high CRP recently

* feeling generally unwell often

* apparent but as yet undiagnosed Raynauds.

[carpathxanridge]

okay with my ana test results i’m kind of hoping for a positive celiac test because then i’ll have a clear answer… i really don’t want to have lupus. or deal with what my mom’s going through which is “haha we don’t know you probablyyyy have a few of these autoimmune diseases.” if not eating gluten could make this go tf away then sign me up! please!

[unkajosh]

The time I was mistaken for a visiting minster

So I was in the hospital today, and a patient said something to me, and we talked. (I stayed in the entryway to her room, not going in.) She told me about her conflicts with one of the nurses, and the guilt that she felt over having to call the techs in so often for help with pain management, and to adjust how she was sitting in her bed (she was a fall risk and wasn't allowed to move around on her own) and how her daughter had been in to see her, up from a small town nearby, and her daughter was very happy that she'd been eating-- chicken broth and Jell-O, but this was a big improvement from what she had been eating. She explained how she'd fallen at her house, and when she falls, she can't get up on her own, and she called for help, and here it was, four days later and she was still in the hospital, to her frustration. She mentioned her arthritis. And also how the doctors had told her that she had pneumonia. She showed me all the bruises on her arms, and told me how they'd had to bring in a special machine to find the veins in her arms so they could get an IV in her. And she told me about how scared she was that she would never be able to just swing her legs over the side of the bed again and get out of it. I told her that she needed to make sure that she kept eating; I wasn't sure what would happen, but she'd never heal if she didn't eat. And some time in there, it came up that she'd mistaken me for a visitation minister. I told her that I was there for another reason, but I was going to be back tomorrow, and I'd say hi. She was clearly uncomfortable, and a bit scared (if not wanting to show it), and wanted someone to talk to. And sometime in there, I had to explain that no, my wife and I were in the hospital visiting the room next to hers. The one my mother is in. I was in the hallway while my wife was talking to mom; she has a bacterial infection, and may be septic, so she's only allowed one visitor at a time, and there are rules that we have to follow to go in at all. So I was waiting outside her room. And maybe talking to a stranger turned out to be easier than worrying. My mother has autoimmune diseases. Not an autoimmune disease, not something as simple and well-known as lupus, but flocks of them-- the rheumatoid arthritis that crippled her older sister, and Sjogren's Syndrome, and obscure ones that only doctors in the Mayo Clinic have even heard of. She's had congestive heart failure, gastric MALT (a form of lymphoma in the stomach), and just had to have all of her teeth removed. She now has a bacterial infection; there could be sepsis. Her memory isn't great, and her husband is a wreck, dealing with this. And I'm keeping it together as best as best I can, somehow. She knows it's medically inadvisable, but that would not stop her from grabbing my hand. She craves touch. She needs contact with people, but feels isolated, now that she can't get around without a walker or a wheelchair. Her hands are so swollen with arthritis, I wonder how much it hurts her to use them. This is the thing about getting older. Everyone else does, too, with all the things that that entails. I guess it's something we all go through, if we're lucky. If we made it this far. If our parents did. If our friends did. But the great truth of life is that it doesn't last forever, and the longer we live, the more we see death around us. The more the people we love die. We're all scared of that. We use indirect language -- James Lacy passed on. The late Doug Atkinson. The fondly remembered Gil Pettigrew. The dearly departed Bonnie Kaufmann. But it's death, and it awaits us all. And it scares me. But we're all going to have to deal with that, sooner or later. I don't know. I'm rambling. But this is the story of how I was mistaken for a visiting minster, anyway. Maybe I should look into that line. I hear it's really rough work, but people need it.

[babs-zone]

a covid conscious road trip diary

los angeles to portland and back, no viruses allowed | april 2023

by babs ✨

hi yes good to be back n writing here on tumblr dot com, and what better place to start than with a little joy? in this series (a companion guide to my tiktok vlogs) i'm going to share how my partner and i traveled from LA to PDX and back without contracting the novel coronavirus.

click here for the full playlist on tiktok. click here for the above video.

⏤

who this is for:

people still using mitigation against SARS-CoV-2 looking for ways to get out and have a lil adventure without throwing caution to the winds

people who stopped using mitigation and are tired of getting sick

people who stopped using mitigation and want to start again

anyone else that finds it interesting ;)))

who this is not for:

people who don't think SARS-CoV-2 is a big deal and don't care to have an open conversation about why that is

people who want to police others behavior— i understand that we may not always see eye to eye, make exactly the same choices, etc, but there is a way to have those conversations while still acknowledging the reality that i have never knowingly been infected with SARS-CoV-2; while there's no accounting for luck, there's got to be something to what i'm doing

on that note, let's talk about my covid reality so we have a baseline knowledge of where i'm coming from:

29 / have fairly stable lupus and sjogrens syndrome / white (ashkenazi background is the lineage to carry the autoimmune diseases with 3 known cases in my fam) / (F) on medical charts but she/they to y'all tytyty / queer

my most *acutely* debilitating recurrent symptom is head and facial pain, which can be (though isn't always) triggered by mask wearing. i experienced this pain prior to the pandemic, but as time has gone on, i've had multiple episodes of pain directly connected to the pressure of a mask on my nose/sinus area (kind of in the same place as the malar rash), that extends into my eyes, up/over/around my skull, and into the clothes-hanger area of my bag, which can then in turn irritate my ribs (though not always, chronically ill people know how these things can cascade). this pain leaves me with intense sensory sensitivity (so in the dark, quiet, unable to do a lot of things), and can also include vomiting. for this reason, i try to spend as much time outside as possible.

10a-6p day job in communications where i work in person ~twice weekly at minimum (gotta Make Content and photos), as well as freelance photography, so my work is hybrid. in 2021 when i returned to work after i got vaccinated, i was still working the same food service job i'd been at since 2016. i ultimately quit that job in september of 2021 when i wasn't able to take enough time off to safely travel to photograph a wedding i'd committed to (driving takes way longer than flying), but had that not happened, i could've easily continued in that position despite the risk, as i'd structured my freelancing around that service job.

polyamorous and live with 2/3 of my partners (one works hybrid, one in service so all in-person), but we all have our own bedroom (even if we sleep in each others sometimes)

our household is in a pod with our other partners' household, which is three people in two bedrooms, all of whom work from home

my entire pod masks indoors outside of our homes unless the environment is intentionally controlled (prior testing, planning, etc); this has been a basic rule of thumb that has not changed the entire pandemic

a few of us, myself included, have access to tests through our jobs, so my household ~usually~ gets two PCRs and two RATs per week

both households have at least one HEPA filter (though all the filters need changing ngl)

both households have one aranet4 CO2 monitors, which is passed around based on need

we've had two covid positives in the pod: separate incidents, both in 2022, where both individuals were successfully isolated before further spread. blessedly, no longcovid symptoms from either of them.

so going into this trip, we brought

a good plan based on the swiss cheese model (above)

lots of different kinds of masks, as switching up the way pressure hits on my face can mean longer time able to mask

a bunch of covid tests

that's it

we considered taking one of the HEPA filters, but, as mentioned, they need changing and we just didn't have time to do so

likewise, didn't bring the CO2 monitors so others could use

ok, i think that's good background, now on to the fun!

⏤

day 1 - LA to silicon valley

after packing up the car, our first stop was coffee at the palm in burbank (which has online ordering and a walk up window), then we drove drove drove.

next stop was for lunch in bakersfield at vida vegan eatery, which has outdoor seating, but it was covered on three sides with plastic. we could've asked the folks working to lift the plastic, or we could've just taken the chance and eaten outside there regardless, as we would've been the only ones out there, but we chose to eat in the car, because this was a driving day anyhow.

drove drove drove some more thru gilroy, the garlic capital of california, where we masked up to stop at a lil farm stand.

made it to silicon valley, where we stayed at the sunnyvale ramada. we looked at a lot of chain options in the area, and chose this one not because it necessarily had the best reviews, but because it clearly had rooms that opened to the outside as well as the AC unit visible on the window, so the room takes in fresh air.

when we arrive at hotels, we mask up while do the requisite once-over (check for bed bugs, etc). we turn the ventilation up real high, open any windows, and prop the door open. masks stay on til we get all the bags in, when we usually settle in.

on this night, we threw on some nicer clothes and took a rapid test (negiii) before heading out to grab my cousin for dinner. they mask regularly, and also rapid tested negative before we headed over. even so, we keep masks on and windows down when we share the car with anyone outside the pod.

ended up on a nice pedestrian street in mountain view for dinner outdoors at yugen ramen and it was so quiet; we truly had the place to ourselves. finally, topped off the night with a quick pop into the patisserie down the street, maison alyzée. it was close to closing, so mostly empty outside of the unmasked proprietor, but, to be frank, we went into this trip assuming we'd be the only ones masked anywhere.

alright that's all for day one, eleven more to go!

[anna-mellgren]

To all you curious souls ~ I am currently in the Swedish arctic where I have a job, some old friends and distant relatives. My family even owns forest here. I have deep roots here and if there is one thing I learned in America is not to take it for granted. I have met a lot of Americans who are cut off from their ancestry and feel a great loss over it. I've had a lot of jobs over the years, some great & definitely some less great. Sometimes I just wanted to pay my bills.

Sometimes I left stuff out of my CV so I don't have to explain the whirlwind that was my 20s. I have juggled work & academic endeavors while dealing with lupus, celiac disease & quite a few ups and downs. To say things have not always gone to plan would be an understatement but my autoimmune health is doing a lot better. I've gotten help from excellent doctors & I've had an amazing therapist/psychiatrist take care of my mental health when things felt heavy. I am genuinely happy now but I can empathize with literally anyone going through a hard time <3

My autoimmune health is actually quite good now and everything is okay. Last year was tough for completely different personal reasons (nothing to do with school, work or my autoimmune health) so I decided I needed a break and go to the arctic where my soul is always at peace. Sometimes a deep inner calling brings you to where you should be :) I will continue my academic endeavors, my law career & I know everything will fall into place in time but sometimes you have to listen to your own inner voice on how to move forward. I still have my apartment in Stockholm & I have taken the night train home a few times to visit friends & family but I will be up here for a while.

I don't mind the cold, I prefer it & the winters are stunning here. It is interesting how I don't take heat well at all but I can always handle cold weather. I don't mind putting on extra layers, I thrive in cold weather. It is almost like my genes are telling me this is my natural habitat. I remember playing soccer in the summers in the USA & how I haaaaated it because of the heat & humidity. Playing outer midfield probably didn't help either lol. I absolutely loved playing in cooler weather in the autumn though.

I will be in the far north for a while & I am very happy if that counts for anything.

Take care of yourselves <3

[youmovedonimmediately]

i have an autoimmune disease and high cholesterol. a healthy liver, thyroid is good, regular blood pressure, but high cholesterol. my doctor is confused as hell. i have to start meds. i’m not even 29 yet.

they don’t know which autoimmune disease i have, but they know i have one. when i got lab work done two weeks ago, my antibodies were tested. i’m getting a referral to be seen for more screening.

at least now i’ll never have to deal with your moms judgment about my health ever again. i met an older man at el pescador after my last appointment and his daughter died from lupus. it’s interesting how i’ve gotten more compassion from strangers than your family.

and by the way, i never had hepatitis. but they are recommending that i get vaccinated for it because i’m unmarried and “have a long future of sexual partners” according to my doctor. i don’t see that for myself at this point.

so i would check your facts on who gave that to you. any ideas?

[toughgirlchallenges]

Mireille Siné: Pushing Boundaries - From Lupus to Long-Distance Running, Tackling the Speed Project with Unlimited Women.

Mirelle in her own words:

“My name is Mireille and I’m a certified run coach, autoimmune athlete, and podcast host based in Los Angeles, California.

I have been an athlete all my life but I found myself in distance running while in college. 

As an exercise science major, I was immersed in the world of bio-mechanics, physical performance, and health. 

However it was also in college where I was diagnosed with Lupus; an autoimmune disorder that left me sidelined from physical activity for 1.5 years. 

Luckily after treatment, I was able to use running to gain back my health and then some! 

Over the last ten years, I have experienced so much of what running can bring; determination, fun, discipline, adventure, and confidence." 

Some accomplishments include:

-   Completed 12 marathons (& counting)

-   First Black women to run from Boston to NYC (200 miles in 11 days as part of the FALKE team)

-   Completed a relay from Santa Monica to Las Vegas. (The Speed Project 2023 - with Unlimited Women)

***

This episode of the Tough Girl Podcast is proudly sponsored by INOV8, the pioneers in cutting-edge sportswear. 

Learn more about INOV8 and get your 15% discount. Click Here.

***

Show notes

Who is Mireille

Living in LA, California, but originally from Cameroon, West Africa

Growing up in Cameroon before moving over to America at 6 years old

Wanting to finish school and to go on to college

Being inspired by her dad who was active and loved to ride bikes

Playing basketball, and enjoying being active

Having ambitious dreams and a love for learning 

Wanting to have a safe profession 

Being interested in science and wanting to pursue college

Studying exercise science for her undergraduate degree

Running track in high school and being curious about distance running at college

Wanting to pursue physical therapy and the challenges of trying to progress in the career

Enjoying running and feeling healthier while doing it 

Dealing with stress while at college

Being diagnosed with Lupus an auto immune disease and the impact it had on her life

The impacts of Lupus on her body

Making changes and how Lupus impacted on her life

Needing to pivot and make a change in her life

Having a year left in school and needing to make some key decisions about her future

Doing what she thought was best

Needing to take a semester off from school/college

Working as a PT assistant and getting back into running 

Balancing health and fitness while having Lupus

Turning to vegetarianism to help manage her Lupus

Training for her first marathon

Magical moments while running 

Running in the Speed Project (2023) - running from LA to Las Vegas over a weekend

Unlimited women - a team of 10 women, bringing diversity and awareness into the running sphere

Dealing with challenges on the Speed Project

Mental tips and tricks for when it gets tough 

Race strategy and how the race worked 

Starting to eat meat again and dabbling in veganism 

Nutrition while running and racing and making it easy. 

Running from Boston to NYC and becoming the first Black woman to be involved in the project with FALKE

Working with FALKE 

Running the Berlin Marathon

Entering the lottery for the London Marathon

The Los Angeles Marathon

Working as a running coach and her coaching philosophy and values

Coaching road, trail and autoimmune athletes 

Education, communication, commitment and joy. 

Why it’s more than just a training plan

Making the training adaptable to your life

Hosting the “Running in Public” Podcast - combining messages about running and public health.

How to connect with Mireille on social media

Final words of advice for other women who want to get into running

Speaking up and the power of advocating for yourself 

The importance of making it fun!

  Social Media

Website: www.coachedbymireille.com 

Instagram: @heycoachmireille 

Ko-Fi: ko-fi.com/coachmireille 

  Check out this episode!

[loveforluna]

I did this when I was having such severe pain in my hands that I couldn’t even hold a pencil for months and was so exhausted that doing simple tasks like taking out the garbage meant I had to lay down and rest for an hour and doctors kept saying it was stress or weight. I asked to but that in the charts that they were not running tests and they suddenly decided to get some of the few simple blood tests I had wanted them to do.

They got the blood tests back and realized I had all the markers for an autoimmune disease, most likely lupus or rheumatoid arthritis. Medication has helped so much. I still have a lot of pain and will never have the energy I once had but I need to rest less and can finally draw again! There was about a year were I couldn’t do any arts or crafts or play video games because of how bad the joint pain was. I wish doctors took it seriously at first instead of having to deal with 10 months of excruciating pain.

This is why fat shaming can have tragic consequences.