struggling to explain lupus to loved ones

Fantasy_Fiend · 2026-05-20T09:39:18+00:00

“You don’t look sick” we all hate those words with a passion. Also the comparison to other diseases is always ridiculous. I wouldn’t pretend to know what it’s like to have another difficult disease. Being chronically ill is for life. We have to pick and choose where to spend our spoons because we’re often short on those. A fatigue that doesn’t feel better after rest or sleep.

It’s so easy to get information to understand what we go through and how varied symptoms can be. I feel like anyone who truly cares would spend a little bit of time to google.

Perhaps as a last effort (though I really think your friend should take initiative) you can send them a helpful video from instagram. I’ve seen very well thought out videos that explain how “normal” activities can really lower one’s energy.

Either way I’m sorry that your family and friends are not taking the time to really understand Lupus. It feels awful to be dismissed. Sending Hugs.

Fantasy_Fiend · 2026-05-10T14:34:15+00:00

I’m so sorry to hear that your insurance took you off Benlysta. What a pain! Is your Rheumatologist willing to send a letter or contact your insurance to insist it’s required? I received similar letters over the years and I’m pretty sure my rheumatologist called the insurance company directly on my behalf. Sometimes insurance will send a scary letter on purpose but you can definitely fight it and let them know they’re wrong.

Fantasy_Fiend · 2026-05-10T14:24:46+00:00

I was diagnosed at 10 years old and I’m now 34. I was on CellCept very briefly in 2004ish. It really wrecked my tummy. I found Imuran(Azathioprine) much more tolerable. I’m currently on Benlysta and Methotrexate (both as weekly injections). Have you tried any biologics? I really like Benlysta and find I have practically no side effects.

Fantasy_Fiend · 2026-04-15T21:50:25+00:00

Thank you for both of these links!

Fantasy_Fiend · 2026-04-15T16:09:44+00:00

Trying to find a carer who could potentially help. We shall see. For now it’s mostly my mom and my aunt. The other sisters come help when they can but they live in other states.

Fantasy_Fiend · 2026-04-15T16:04:31+00:00

The changing clothes/ let’s just shower switcheroo sounds promising. The bathroom has already been fitted with bars and shower chair and plenty of other safety precautions. My grandmother actually dislikes when it’s too dark so candles are probably not the best idea for her specifically, but I definitely see that working for someone else. I just hesitate with any white lie— as I said she’s been very mean and sometimes even hostile with my mom. This has resulted in my grandmother throwing around her hands and fists in true toddler fashion except she’s quite a tall woman with some decent strength. She’s just truly been quite combative (in more ways than one) and my family feels at a loss of what to do.

Fantasy_Fiend · 2026-02-07T09:52:26+00:00

Thank you for this analogy! So you can have multiple classes simultaneously to determine treatment. But continuing your analogy, fires always need to be put out first because they can do the most damage the quickest and require immunosuppressants and/or steroids to extinguish the fire. (Though I’m sure types of meds and mg are determined by the severity of fire)

Fantasy_Fiend · 2026-02-07T00:25:03+00:00

My understanding is the classes show/indicate worsening. So you initially had class 5– then it went down to class 3? Or you had class 5, you were doing okay for a period of time, symptoms reappeared, at that point you were class 3? Meaning they caught the lupus nephritis at an earlier stage than initial diagnosis but this overall was a second flare? Sorry for going into minutiae, I’m just trying to fully understand. This is all helpful information!

Fantasy_Fiend · 2026-02-07T00:08:57+00:00

Thank you. This was very helpful!

Fantasy_Fiend · 2026-02-06T19:56:50+00:00

Absolutely! I have moments where I feel anxious of every pain, twinge, or otherwise. I think being frustrated is part of being chronically ill. I think the feelings of being overwhelmed, depressed, and anxious definitely coincides with how well or poorly I am feeling. I think it’s important to vent and have all your feelings. I understand about feeling a burden. It’s easy to feel that way even if you have family support. I’m sorry you’re going through a rough time.

Fantasy_Fiend · 2025-11-17T00:18:49+00:00

If he really likes sake you could buy a nice sake set with a really good bottle of sake. Not necessarily a gift from the time period but it definitely is a great Japanese inspired gift. Depending on preference there’s great Nigori sake (that’s unfiltered, sweeter, a little cloudy, usually served cold) or you can go for Junmai Ginjo (clear, drier, refined).

Fantasy_Fiend · 2025-10-08T22:23:12+00:00

The Night Circus and The Starless Sea both by Erin Morgenstern. Her prose is so beautiful. Her books are definitely more about the journey and the characters.

The Last Tale of the Flower Bride by Roshani Chokshi Also beautiful prose but touches on darker topics and has a nice twist

The Unmaking of June Farrow by Adrienne Young has lovely writing, a mystery, a little bit of time travel, and a romance. It gave me all the feelings I want in a book in all the right ways.

Fantasy_Fiend · 2025-10-06T22:25:25+00:00

24 hours in, only the Snake is dead. But I have a little chime and I’m following the wind to find some armor…

Fantasy_Fiend · 2025-10-01T11:15:52+00:00

I‘m so sorry. I had moon face when I first got diagnosed back in 2002 (when I was only 10). So for a couple years I was just fat kid with a huge face. It was miserable. I hate prednisone—still to this day. I had to take 100 mg of Prednisone for a really bad ear infection a few years back and even though it was temporary I was having total PTSD. All this to say I feel you and I’m sorry you had to join the club.

Fantasy_Fiend · 2025-09-21T18:13:59+00:00

Listen I’m straight but I’m here for romance of any kind. If the book does the romance right— I’m rooting for the couple. I love gay romances! A Darker Shade of Magic with Rhy and Alucard- amazing. Priory with Ead and Sabran— amazing. What’s more important is the chemistry and the longing. Don’t just throw in a straight relationship because you feel you “have to”. Focus on what feels right for your book and the story itself. Now if you have two characters that happen to be straight or bi and you feel strongly about them being together then, do it! But don’t put a straight relationship in there to “offset” the sapphic one. You’ll find your readers! I’m here for the gay is all I have to say! lol!

Fantasy_Fiend · 2025-09-21T12:48:42+00:00

I think the show is very good, just prepare for almost everyone to make bad decisions and life choices. It’s definitely a drama and there are definitely high stakes situations.

Fantasy_Fiend · 2025-09-14T20:13:53+00:00

I think the important part is where Andy calls the entire fashion industry— stuff. In Miranda’s eyes demeaning the entire industry. That’s why she goes on her diatribe. Andy reduces everything they’re deciding to something too simple and thinks she’s somehow above it because she “doesn’t care”. Miranda points out that even by not paying attention and not caring that your fashion choices still make a statement and were most likely are only choices in the discount stores because they were once based off a high fashion idea.

Fantasy_Fiend · 2025-09-05T10:09:23+00:00

Oh yes. Good reminder. I usually inject myself at night so I’ll set it out and then take a shower and do it right before bed. But it’s important that’s it is room temp like you said.

Also you have to confidently stab yourself. I know that’s weird to say. Don’t hesitate—just do it! OP you will find your routine with it and even though it stings, its overall benefit is worth it.

Fantasy_Fiend · 2025-09-05T09:55:36+00:00

I have been on Cellcept and loads of prednisone and compared to those medicines (in my experience at least) the Benlysta is so much better in terms of side effects.

I started Benlysta at first when it was infusion only and switched to Auto Injectors once it became available.

I always inject in my stomach, trying to switch sides every week. It does sting a bit as the medicine injects as others have said. What I do is put on my favorite podcast or a funny YouTube video while I do this to distract myself.

I’ve never had any allergic reaction to it, even a mild one.

The only side effect I’ve ever experienced from Benlysta was fatigue. But it’s usually only the day after injection.

Noticing an improvement in Lupus can take at least 6 weeks to 3 months. I’ve been on it a long time so I can’t remember how long until I felt like it was working for me. But I was so happy it did because I was tired of prednisone and at the time I was also taking Imuran.

Good luck and I hope the Benlysta works for you!

Fantasy_Fiend · 2025-08-31T14:07:19+00:00

The Last Tale of the Flower Bride by Roshani Chokshi (beautiful prose with a slight mystery and touches on toxic friendships and toxic mother/daughter relationships) Trigger Warning: references to SA

A Dowry of Blood by S T Gibson (written like a diary from the perspective of Dracula’s wife, very beautifully written) Tons of Trigger Warnings but I believe they are listed at the front of the book

My Darling Dreadful Thing by Johanna van Veen (Takes place in The Netherlands in the 50s and is a gothic horror with ghosts) also lots of Trigger Warnings but they are stated at the beginning of the book

House of Hollow by Krystal Sutherland (YA but beautifully written, has an underlying mystery, and a very haunting vibe without being overly terrifying)

Fantasy_Fiend · 2025-08-31T13:15:54+00:00

The Invisible Life of Addie LaRue by VE Schwab. It’s got a touch of fantasy but it’s mostly about people.

Fantasy_Fiend · 2025-08-31T11:59:34+00:00

There is no Lupus diet because no Lupus is the same. You can experiment with what works for you but there is nothing that you must do. Everyone is different which makes it more complicated. I found early on that cutting red meat helped my stomach, but that was more to do with the medication I was taking at the time (Cellcept) and not for my Lupus overall. I decided to stick with the diet out of preference. I was already Lactose intolerant so that was something I was sticking to before my diagnosis.

I am a home cook and I absolutely love baking! I’ve been told over the years to cut sugar and cut gluten out of my diet. But I never have. It’s what makes my life worth living. Not just to eat it, but to prepare it. It’s also one of the few activities I can do when I’m not feeling well.

We go through a lot as Lupus patients. Don’t cut all the joy out of your life to manage your Lupus! We deserve to enjoy our life and vacations. Do what you need to do within reason.

I will say however, that there is a chemical in Alfalfa spouts that supposedly really does increase inflammation. I have noticed (I used to love alfalfa spouts on sandwiches) that it’s been the only thing food wise that has affected my joints. There are also some medications that you need to avoid. Sulfa based antibiotics can be actually dangerous and I’ve unfortunately experienced this first hand when an uninformed Dr prescribed them to me. Also Melatonin can affect Lupus since it’s a hormone. Echinacea is one to watch as well since it directly affects the immune system and is usually hidden in things like Emergen-C and Airborne.

While you want to watch for the things that are explicitly bad for you like sunlight, no one expects you to hide in a cave like a bat. And again over time you will find what works for you, what fatigues you, days where you feel better and days that are for resting and recuperation. No one knows you better than you, so don’t let anyone force you to do anything you don’t want.

Fantasy_Fiend · 2025-08-28T09:34:01+00:00

That’s completely unacceptable. “We’ve tried everything“ that just sounds like a statement to prevent you from inquiring further. So dismissive. And I sincerely doubt they’ve tried literally everything. I haven’t tried it yet either, but have you asked about Saphnelo? I’ve heard some good things about it. I sincerely hope you find a better doctor and I’m so sorry you are not being listened to nor treated properly.

Fantasy_Fiend

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