#lupus problems

[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😆🥰.*

[petals2fish]

I took a nap but now I’m wide awake again lmao

These new medications are WILD

[serana666]

Getting on my soapbox about something I think is REALLY important for chronically ill ppl to think about.

Being undiagnosed and disabled is a terrible experience. You’re screaming into the medical void for ANYONE to please SEE YOU and help. You start thinking “is it just me? Could it just be in my head? What’s wrong with ME?”

And I’m here to tell you, it’s 👏🏻NOT YOU👏🏻 it’s THEM. (The doctors)

I have been through the grueling process of becoming totally disabled by chronic illness, without knowing what it could be. I picked up diagnosis’ along the way: RA, then lupus, then fibro. And I am LUCKY that my blood worked with me to show those things, not everyone is so lucky.

I kept thinking (foolishly buying into the narrative doctors try and sell you) that if I could just get a *serious* diagnosis I would finally be given access to the care I needed, that ALL disabled people need. That was never the case at any step in the process.

When I was diagnosed with RA and began having symptoms outside of it, that were completely debilitating my rheumatologist told me I just needed more exercise and activity. I told them specifically I had fatigue so strong that I was loosing the ability for basic functioning.

When I found a new rheumatologist and was diagnosed with lupus I thought my troubles were over. Then she started saying weird shit like “do you have a boyfriend? You’re so pretty!”

She found out I was a lesbian when I brought my girlfriend to my appointment to be my advocate. Her whole demeanor changed to me and I spent 6-8 months with her receiving no treatment. They kept saying “oh it’s the insurance” nope they sent me letters telling me this office was not following up.

So I moved to a blue state literally out of fear that I would die waiting on these bigoted doctors. I got a rhum in a blue state. I was diagnosed with secondary fibro. Again, I foolishly believed I would finally be in the clear. No, she still minimizes and blinks at me when I describe my pain.

Doctors are not our allies, even though they should be above all else. They find ANY excuse to minimize us. So if you are someone who is undiagnosed or with a diagnosis that is misunderstood/not taken seriously , they will milk that for all it’s worth. 👏🏻ITS NOT YOU👏🏻

I’ve seen people in disabled communities minimized for their race, their weight, their gender, their sexuality/queerness, their age, their diagnosis or the lack thereof, ITS NOT YOU!

You know your body, and the pain you feel BETTER than any doctor that has been trained to systemically ignore you!

Don’t let them tell you what your reality is. It’s such a knee jerk reaction for minorities to do this to themselves.

You deserve medical care that isn’t contingent on your doctors bias’. We NEED more empathy. Don’t let their disregard for your life leak into the love you NEED to give yourself. 💕

[cinnabadgr]

[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!

[spoonie-support]

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

you are not forgotten. we all are invthis together.

[chroniclyillpolybat]

When you find out you have a chronic illness, it's like a big slap in the face - you realize you'll never be 100% healthy again. It's hard for people who've never been through it to understand how it feels to just accept that your life will never be the same. You have to carry this extra burden with you for the rest of your days.

[50stressballs]

Really wish all the “low impact” exercise routines I find weren’t hyper focused on like squats and lunges and shit. Like bro, my knees DO NOT WORK. They simply do not function properly. If I do 15 squats today I’m not going to be able to walk properly for literal days.

…….but like I’m so tired and I NEED to work out to help with my fatigue, and I don’t have the attention span for yoga right now. So I do the five bajillion squats anyway.

And I’m stupid so I forget that that’s a bad idea, so when I’m in an incredible amount of pain just walking up and down the stairs for the rest of the week, I’ll be like

[blitzsicedcoffee]

Sometimes I feel like while my mind is on Earth, my body is in some fucked up void liminal plane where it's cold and hot and feels like something is squeezing all my limbs and giving me 5-10 hits of psychic damage.

[pinxyreaps]

It’s sad how much this happen. Every-time either my blood squirts out my arm or they can’t find it and have to do a sonogram on my arm.

[drewman611]

Well it's been a hell of a week I had a terrible cough and cold beginning Thursday. I began to feel a lot of pain in my right side which was distended. I thought I had pulled a muscle however I'm just a big blood clot. Not sure if surgery will correct the issue. So I'm waiting for it to shrink but I have internal bleeding. I'm just venting a little bit cause I'm scared. No one is sure how to go about taking care of it. I'm in a lot of pain and the only options for now are to stop my elequis and insulin. I have lupus anti coagulant which means my blood doesn't thin correctly. I also have diabetes. Stage 3 kidney disease. (DARC) (PN)

[pained-princessluna]

Chronic illness be like:

On today's agenda, we are going to spend the entire day going through the alphabet, trying to remember someone's name we briefly ran into this morning.

[petals2fish]

Hi ily ♥️

[serana666]

Doctors/nurses SUCK that’s all I can say 😤

[decodedlvr]

If you have any form of joint issues or Ehlers downloads syndrome please interact with this post 

I need to ask some shit man

[chronicallyuniconic]

A letter came about my blood results.

As well as the "big diagnosis" of Multiple Sclerosis, I may also have Lupus on top of it. How did they miss this, way back when I had that first & second full blood count. Is this how they missed I was anaemic too? It makes sense why things are, but doesn't make it any better.

On top of the "being disappointed with med professionals" feeling, I'm utterly defeated by this kind of betrayal from my body.

In a completely absurd turn of events a few weeks back, I was upset that I'd invaded my brains privacy by having an MRI. Seeing the pictures of my brain, felt like I'd violated it's existence.

I felt really awful that I didn't ask my brain permission to have a look at it, which is ridiculous when it's my brain giving me these thoughts in the first place.

I know it's an outrageous, nonsensical, preposterous thing to feel, I never thought I'd feel like that about a body part. I never felt bad when I got an x-ray on my hands, wrist, feet, ankle(due to breaks/fractures). I never felt bad for the bones in my body or ask them for permission. So why did I feel this about my brain?

Almost like I have the brain that I think with, and the brain that exists/lives in my skull, that somehow, is it's own being. Why did brain do that. It's fucked w my mental health completely cus it's so incredibly irrational, laughable, silly, unreasonable. It's made me feel stupid, which isn't a word I like to use as a descriptor for a person.

Two brains, and none of them wanna tell me what my body is playing at, or why it hurts today, or why sleep never refreshes me, or why that bit of skin is itching at me, why it feels like bruises all over my head one minute and nothing the next, why my legs and knees go weak, why my hips collapse, why I have to rush to the bathroom EVERY time, why I have seizures, why I'm nauseous again, why my hands go fizzy and turn numb.

Two brains & neither can say.

None of it makes any sense.