#life with lupus

[berberriescorner]

Hello, my loves 💕.

To be frank, life has been kicking my ass. Sorry, I’ve been MIA. Your girl is just tired and I haven’t had the urge to write anything lately. This has been an…eventful year. Hell, to be honest, it's been an eventful couple of years. Grateful and thankful to be here. Never get that twisted. Life has been smacking me upside the head for quite some time though. All I’ve wanted to do lately is curl up and read.

I’ve also started a bookstagram and booktok, so that’s been getting a lot of my attention as well. I wish I could put into words how I'm feeling mentally and physically but I'm too tired😆😩.

As soon as this lupus flare eases up. Once I don’t have so much brain fog. Maybe I’ll have a desire to write, but until then I hope you all continue to read and engage with the stories available on my masterlist💜.

Honestly, let me be transparent for a moment. I think I can speak for several Tumblr writers. I look at the notes on some of these amazing fics that I’ve read and I'm like, “What the hell? Where are the reblogs and comments?” I’ll say it over and over. The love button is cool, but it’s the bare minimum for that writer. The notes are not matching the constant requests in their asks. That's just the truth🤷🏾‍♀️. The engagement is just not the same. When we bring it up. Were told to get over it. Mind you this ish is free and we've invested our time creating something that brings joy and entertainment. Engagement shouldn't be so hard to come by. If the facts make you feel a way, ask yourself why that is.

Anywho let me get off that soapbox. I just wanted to drop in and give you all a life update and explain my absence. I hope all my beautiful lovelies are doing okay. To those who aren’t, please know it’s okay to not be okay. You’ll get through it. Just keep the faith. Love you my babies🥹💖.

Tagging a few lovelies so that they get the lovin’ I came to drop off😆💖:

@astoldbychae @darqchilddaydreamz @ravennaortiz @rio-reid-whoreee @percosim @lovedlover @jannavaire @sunshine-flower @phoenixhalliwell @kyletogaz @nobodygetsza @1andonlytashae @novaniskye @thebumbqueen @captainwithoutmakingitlove @kinkiicoils @wroteitbutneverwatchedit @bisexuallyattractivebitch @minton131 @thirtysomethinganduncensored @starrynite7114 @fineanddandy @withmyteeth @prettyyybrownroundd

*if I forgot to tag you sorry in advance. Mama has a lot of babies😆🥰.*

[scudismystud]

[whatspringdoestothecherrytrees]

O Cruel Fate

got admitted to the hospital for meningitis.

they think it’s aseptic but they are still going to tap me to make sure it isn’t fungal.

let’s see…..

[quill-pen]

Society: "Get ready for hot girl summer!"

Me: *sitting in a steaming hot bath because cramps and lupus* Am I doing it right?

[my-life-now-with-lupus]

So, it’s still here. 

It’s no longer as wild.

I keep asking - are you sure? 

I’m all or nothing, pacing is becoming a repetitive challenge. 

Trying to achieve a balance- sacrificing, functioning, surviving, living.

Grieving for the life that you haven’t got the energy, memory, stamina, medical record for.  

Things you took for granted, which now fluctuate making it difficult to make plans, to commit, to show up. 

Hard to Accept that it’s difficult for others to understand when not wearing your shoes. 

The invisibility, the need for validation but not wanting or seeking sympathy or attention. 

I should be doing more taming, 

But I want to kick it out the park. 

I want the sprint finish- not the life marathon. 

It’s still here. 

[thelupuslady]

[whatspringdoestothecherrytrees]

The days when you’re not feeling it count the most.

😷 Found out on my birthday weekend that my doctors think I have kidney involvement from the lupus.

Can’t pretend I’m not scared. Can’t pretend I’m not sad.

I’m scared to be so relatively young and already wondering if I’ve lived most of my life.

I’m scared if I might die and leave my husband and baby son. And that thought scares me the most. @anolderlove

🧪 Today I feel like going home. I feel sick from the high-dose prednisone and its resultant weekend insomnia.

💊 Dreading starting the new chemo tonight.

But I am going to do some low-energy tasks, like writing, data analysis. If I have to leave early I will.

🎛️ But first. . . Got to move that needle.

🐺 Lupus may be a b*tch but it’s my B*tch. It’s taken so much, and I refuse to let it take my dreams.

Not ashamed..

[hellyeahsickaf]

Low Spoons and Hygiene

Sometimes being disabled means struggling with hygiene and that can be embarrassing, even though it's not your fault or a reflection of you as a person. Nobody wants to be stinky or feel dirty, especially when a lot of illnesses and disabilities can entail symptoms like excessive sweating that can make the issue of struggling with hygiene a million times worse.

But smelling bad is the least of your worries, as poor hygiene can lead to things like skin infections. Bacteria and fungi like hanging around in stagnant, often damp areas that collect sweat. And most people have folds- even if just a little, which can be the ideal habitat for dangerous microorganisms. Not changing your underwear/bra or washing your body for an extended period can lead to things like jock itch, intertrigo, yeast infections, athlete's foot, UTIs (anyone can get one and they can spread to the kidneys within days or even hours- and you need those little guys!), all sorts of complications. The existence of foul or sometimes even a slightly "sweet" odor on your body or even in your urine tends to indicate the existence of bacteria (it's why armpits stink) or fungi like candida. Dental hygiene is equally important- an infected tooth or excessive cavities can be bad news. If you experience these things or struggle to regularly care for your body, it's not something to be ashamed of. All of those complications can and do happen to people who do everything right.

Note that issues like UTIs or dental infections don't tend to just go away on their own and need to be treated as urgently as possible.

However, I'll share some things that may prevent or remedy issues like infections and odor that's gotten out of hand and hopefully some may find this list helpful in some way. Any products I've listed may be found at other retailers or at different prices, they're just examples. Feel free to add on to it.

The bare minimum is always better than nothing. Brushing with just a dry toothbrush, using disposable body wipes or a washcloth/sponge instead of a shower, dry shampoo (the sprays are actually pretty bad for you, I'd stay away from those if possible), leave in conditioner, also whole body deodorant is a thing. If the most you can do is change your clothes- hell even just change your bra and/or underwear, it can be the one thing between you and an awful infection.

If infections are a concern, like if say you suffer from chronic UTIs or yeast infections it's advisable to wear breathable cotton underwear.

If you can't get up to brush your teeth or struggle to do so, it may be helpful to purchase disposable toothbrushes. These ones have floss picks attached.

Flossing is just as, if not more important than brushing. If you only have the energy to floss on some days, do that. If you need to keep floss picks and a place to dispose of them near your bed, then that's fine (just don't let it pile on without disposing of it and create a biohazard). it can help remove food particles that help create a breeding ground for bacteria. Also gently moving in and out between your teeth with slight movement if needed is ideal, don't roughly saw across your gums, ouch.

If you struggle with wiping say due to mobility issues, there are products for this. Wiping back to front as an alternative risks yeast infections and UTIs. It's a very common cause of these diseases due to bacteria like e-coli. We do not want that.

Crashing and can't wash your sheets? Out of shirts with no energy to do the laundry today? Antimicrobial fabric spray may help with the odor and bacteria that accumulates on fabric as a temporary fix until you can properly wash it. Try not to wear clothing or interact with fabrics like blankets and couches that are still wet from the spray, as that can irritate the skin.

Try to avoid "feminine wash" products if possible, you don't need the fancy Summer's Eve premium strawberry hibiscus blush scented whatever, it can fuck up your PH and kill good bacteria despite claims to do otherwise. Same with PH wipes. It's recommended not to use soap on your genitalia, especially scented and especially if you have a vagina. If you must use some sort of soap, dermatologists typically recommend the most basic, unscented wash. And do not put it in your body by any means.

Rinse free shower sponges have been a life saver for me, especially the ones that also work as shampoo (it's probably not color safe tho). You just add water, lather, and make sure you dry off well. If it helps you determine how much to buy, I normally find myself using maybe 3-5 sponges each time.

OTC jock itch cream can work for some fungal infections on the body not limited to jock itch but if you see no difference or worsening within a few days of using it, consult a dermatologist as you may need something different or stronger.

Unscented pads and tampons are best and should be changed every 4 hours or so ideally. Never leave a tampon in for over 8 hours. Despite common fears, 9 hours won't give you toxic shock syndrome, that normally takes a few days and is quite rare with tampons but that doesn't mean that 13 hours or something is good or safe. I've just heard some say that sex ed scared them away from tampons after being told stories of TSS. I hear that menstrual cups are also a great alternative that many don't consider.

Monistat and similar yeast infection products often come with different options like 3 day treatment, 5 day treatment, 7 day. I know you want to feel better ASAP, but just take into account that 3 day will be highly concentrated and can cause more burning than the 7 day. Longer treatment may also be more effective in some cases. Penile yeast infections exist as well. Just be aware that some products are more potent than others regardless of birth sex. Antifungals in general may cause itching and/or burning, which some are more sensitive to than others or may even find triggering in cases where it must be applied to the genitalia.

Hydrocortisone cream is your best friend if you're experiencing itchiness due to things like skin infections, contact dermatitis, yeast infections, etc. But please don't use it to mask the symptoms of an infection without treating it.

How frequently you need to wash your hair varies by hair type. This can vary between every 2 days for some and every 1-2 weeks for coily and textured hair. Make sure you look into what is ideal for your hair type. And again on days where you cannot wash, disposable sponges and dry shampoo can be a life saver.

If something is discolored, odorous, itchy, inflamed, bumpy, producing moisture, warm to the touch, oozy, weepy, splotchy, sticky, burning/painful, it may likely be an infection or in some cases an allergic reaction. Familiarize yourself with what different skin infections and diseases may look like on your skin tone. Ringworm and other fungal infections for instance may appear red or pink on fair or lighter brown skin, but on darker skin may appear gray or darker brown.

Fungal infections are also super fucking contagious. To other parts of your body, other people, even to pets. Wash your hands well with antibacterial soap, especially before and after applying any topical treatment or touching the area in any way. After a shower, PAT the infected area dry and do not reuse that towel or use on other parts of the body.

Invest in a shower chair if you feel it may help you, it's one of the best things I've ever bought. I didn't want to get one at first because it felt like I was "giving in" to my disability more and more but that's the internalized ableism talking. Get the shower chair.

A bar to help you stand from the toilet/tub/shower chair may also be helpful.

Again, feel free to add to the list if you want!

[spoonful116]

Getting diagnosed with a chronic condition is easy! Just follow these steps:

Have symptoms

Schedule doctor visit

Wait indefinitely

Repeat

[spoonie-support]

To everyone who is homebound or bed bound this holiday season...

you are not forgotten. we all are invthis together.

[berberriescorner]

Sooo…I had a follow up with my hematologist.

Guess who starts yet another cycle of iron infusions next week?!

This lady 🤦🏾‍♀️. I’d go into detail, but at this point who knows what the real answer is 🤷🏾‍♀️. I’m just venting lovelies. Tired of being tired. Tired of being out of breath. Tired of lupus flare ups. Sick and tired of being sick and tired.

Yes, you get used to it, but man! I want to get back to a place where I have enough energy to do the things I love. Welp I guess it’s good I ordered all those damn books lmao! Now I’ll have new reading material for my infusion appointments😆😩🥹.

Okay enough of being an emotional lil bish. Back to being a sensitive thug😆😂🤣.

How my babies doing though?!

[swollenbabyfat]

Remember to take ur meds (＞。☆)

[crimeronan]

DIDN'T REALIZE NEOPETS HAS A BUNCH OF WEARABLE MOBILITY AIDS AND AUTISM EQUIPMENT NOW..... HELLO?

[quill-pen]

Well. That's me put in my place.

When you have a kind of rough day at your doctor's and just go looking for a little hope---any little hope--to dispel your fears and heartache online and it just slaps you back in the face with ice cold logic that confirms all your doubts and summations:

[ladylucksrogue]

I don't write a lot if these kinds of posts but I had a bit of a health scare this past week. I'll preface and say that I'm doing better.

Maybe this will help someone recognize symptoms a bit better than I did, because it really could have gone horribly wrong.

I have several medical issues, including an autoimmune condition called SLE (systemic lupus erythematosus) which I've had for a long time and is well managed. I also used to work in the medical field, and know my body fairly well. As with many people that have lupus, I unfortunately am a bit jaded with certain symptoms because it's always, is it just your lupus or is it something you should go to the doctor for? Because honestly, I've gone to the doctor so often only to hear, yup, lupus.

That being said, my meds make me susceptible to catching every little thing that goes around.

So when I woke up with a stomach ache, I was just like great, a stomach bug. It kept getting worse. Knew it wasn't appendicitis because it was literally my stomach cramping.

It got so bad that I was like I have to go to the hospital because it was literally radiating to my back and I couldn't stand up straight.

It wasn't until I was at the hospital, where they at first assumed it was the stomach flu, that I mentioned the pain in my back too, where they took me seriously. Thought it was my gall bladder (mine was removed). And then mentioned pancreatitis.

I mean I know of it. But I've never seen a case except in a dog. Never thought about it. So blood tests, ultrasound, other tests ensued.

Of course me on google, researching. And then the 40 percent mortality rate in combination with lupus jumped out at me. It's been a rare thing where I've ever been confronted with something so serious. My labs looked too good, Ive had that happen so often in my life. My labs are good till they aren't. I was sent home, with pain meds, waiting on other labs. I finally got clearance yesterday. It's not pancreatitis. I have blood and protein in my urine, nothing new, and although a kidney infection sounds scary it's familiar territory. Still not sure why my stomach was affected. No one knows, mysteries of life.

Everyone knows certain symptoms, like if your right side hurts, could be appendicitis. Medical emergency.

No one talks about pancreatitis though, the symptoms or that it can be literally life threatening too. So consider this my little PSA. I might not have actually had this, but the scare is enough for a lifetime.

Take care out there everyone and stay healthy.

[thelupuslady]