hellyeahsickaf

[hellyeahsickaf]

I hate that I still struggle to ask for help with anything, even if I need it. Like I guess it just doesn't get easier? But also I've always struggled to because asking for anything, hell not even asking but simply having needs has always been too much for others.

There are times that during a bad flare up it's stopped me from eating, like for days because it feels illegal to ask for help making a meal. Can't refill my water? Guess I'm not taking my meds or hydrating until I can.

It's why I even ended up in the ER with pyelonephritis and nearly sepsis. The previous time I'd asked for antibiotics for a UTI I was treated like a burden and besides, my symptoms seemed way better for like a week or two so it must've just gone away (it rarely just goes away). Even when I had to go to the ER I felt guilty asking and that was reinforced when I was asked why I couldn't just wait until the next day and try to sleep it off. I'd literally just tried to nap it off but woke up from the back pain and headache. My fever was almost 104 and I may not have survived if I waited.

I'm slightly better at asking for help now but normally that's more if someone happens to clearly not be preoccupied. Sometimes I still find myself having POTS episodes on the kitchen floor unable to reach my beta blockers or water on the table. I figure, I'll be able to reach it eventually. When my sibling has asked why I didn't call her for help in the next room I'll say something like "you seemed really into your game, I didn't want to bother you"

It got to the point that the day after my gallbladder removal when I was on strong painkillers and needed to rest I was in extreme pain trying to reach the microwave to feed myself (it's suspended over the stove). I was confused why everyone was freaking out telling me to go lay back down, I mean I've been forced to care for myself under worse circumstances, in worse pain, with worse fatigue. Besides, everyone else likely had other things they'd rather be doing.

In fact the only thing I don't struggle so much asking for help with is feeding or taking care of my dog. Which I guess means I value her wellbeing more and know she's not a burden on people. If anything I see myself as a burden on her.

I will not be shocked if when I die it's because I didn't want to bother anyone by asking for a ride to the hospital.

[hellyeahsickaf]

Call me petty or vindictive but if it turns out my family member is responsible for me constantly having multiple types of chronic infections- which is not unlikely considering when it started and given all of the collective symptoms, I hope that for the rest of their life they feel guilty about their decision to expose me to something so preventable and then make me out to be a massive emotional burden for what they did to me.

I don't want pity or even an apology because it'd be worthless to me at this point, but when they see the dark circles under my eyes and the pink rash across my face and my sickly complexion, I want them to remember that it started after I begged them to get tested and treated for very obvious covid symptoms and made it very clear that the consequences could kill someone or make them very sick forever and that I'm likely to be that someone.

[hellyeahsickaf]

Also if I have lupus as a result of covid I'm gonna be so fed up knowing how preventable it was because the person that gave me covid 300% knew the risk they were putting me in but refused to see a doctor until I actually got sick because they didn't want to confirm their fears of having it. I told them I would inevitably get it and it could kill me or make my disabilities so much worse and they didn't care. Then I got it and my body hasn't been the same since. And it was already SO fucked from losing my gallbladder.

When the chronic infections started, this family member told me something to the effect of "You know I always support you but this chronic infection thing is getting to be too much for me". To which I could only respond with, "Sorry, I didn't realize that this was affecting YOU so much. I should have considered how difficult my body's chronic infections would be for YOU. I won't do it again, my bad". 😒

Since people like them have always made me feel like a burden, I still take care of myself no matter how bad it is. My antibiotics are free so it's not like it's been this big extra financial burden on them, I just asked them to pick me up some fucking UTI tests a few times, maybe one or two extra (free) prescriptions?

Like how are you going to see someone suffer with something which at one point hospitalized them and very well could have killed them and be like "fuck, don't they know how difficult this is for me???"? Even if it's not lupus, i think they did something to my immune system that made it way worse than it already was, and I already had markers for autoimmunity.

[hellyeahsickaf]

[hellyeahsickaf]

I might have lupus and I'm not thrilled. I need to ask my doctor for a referral to see a rheumatologist to test for all the markers but I haven't because I'm just so fucking tired of everything, especially after my last encounter with a physician.

I don't mean it in a self diagnosis "I looked up my symptoms and Web MD says it's probably lupus" way but as in, I've had autoimmune symptoms for over a decade but since getting covid I now have chronic infections amongst many other things- including a distinct butterfly shaped rash. The development of lupus can be associated with covid and if I developed it, I don't know what to even do with that information.

I didn't think much of the butterfly rashes until recent, despite knowing what a malar rash is and that it's most commonly associated with lupus. It's especially present when I shower, wash my face, have a CFS flare up, go in the sun, go in the cold, or am fighting an infection. And god the fucking dark eye circles- I've always had them with flare ups but they look like bruises, like I got in a fight or something. I haven't been sleeping well but I look like I haven't slept in years. My eyes are puffy and my face lines are more pronounced. I don't know if it's in my head but I feel like I look 10 years older every time this happens. I know it's not forever, it's just a flare up. But it's one of those bad flare ups where people genuinely look at me and say "oh my god you need to go to the hospital" because I look like a fucking extra on The Walking Dead.

[hellyeahsickaf]

So I'm frustrated because I feel like my ortho was apathetic to my concerns and refused to listen to me. Not the first time I've had this happen and maybe I'm being unreasonable.

After years of chronic and severe bilateral hip pain and a prior MRI diagnosing a bilateral hip impingement, i was provided a pelvic and right hip x-ray. My new orthopedic surgeon insists my right hip is the only true concern if it is a hip problem but it is "likely a lower back issue". He ignored the 2023 MRI and me reporting my left hip being worse symptom wise. A physical examination showed limited hip mobility. He did the standard test of rotating my legs to check for pain and range of motion. While my left hip hurts worse, neither hip could fully rotate but my right hip was worse in this regard. He asked if and where it hurt and I showed him. He said it was consistent with a hip issue. I asked if that was because of the impingement and he hesitated and said "could be".

For years they've both been painfully clicking and popping and hurt to walk on which does not indicate any spinal issue that I'm aware of. I mean there's the mild scoliosis I've been diagnosed with but in that case it's a bit odd that he didn't order imaging for my spine. According to him my insurance is only allowing him to treat the right hip. He has yet to acknowledge the left one in any regard aside from the range of motion. I don't know if that was his choice and he told them he was only concerned about the one hip or if that's normal for insurance to do. Like imagine you break both arms and they're like "we're only gonna x-ray one of them, that's all you're covered for, womp womp".

When I got to my second appointment with him yesterday, the nurse was setting up instruments and solutions for a hip injection. I was like "that's weird, he didn't mention injections at any point. I would have liked to discuss my results first at least. I don't know if I want this". The nurse was very nice and sympathetic, and just said "I'm sure he will go over the x-rays and then you can decide whether to go through with the injections. Sorry, I'm just doing my job and he asked me to set this up in here". This was a bit reassuring, for a minute.

Upon quickly glancing at the x-ray of my right hip for 4 seconds tops he said "it looks fine, it's probably spinal" and gave me a lidocaine injection on my right hip (idk if with epinephrine), which I later learned was likely affected by medications that he didn't account for, such as beta blockers. This may have, along with some of my conditions, exacerbated the side effects. He also didn't bother to tell me what the injection was until I asked. There was not a shred of informed consent, just said that it's a common diagnostic approach, which I understand to be true. Supposedly if that hip felt better for a time then it's a hip issue. And for a few hours as I'd predicted, that hip was absolutely fine!

I don't like bringing this up, but I have DID and the suggestion of a surprise injection was extremely triggering, especially since it required being in a state of partial undress. Sure as an adult I can just walk out, but I was essentially told that I had to do this if I really wanted to diagnose the source of my pain since the x-rays were unremarkable and he still felt that it was a back issue. My hips clicking and popping, my previous diagnosis, it must be a back problem.

Needless to say, during the injections I felt one of the others tap his back pocket to make sure the pocket knife (legal) was there. He felt that this had to be a trick since doctors don't just give surprise injections without asking permission, having assistants set it up before you're even in the room without any prior discussion. Even if you've ever gotten an unplanned vaccine, they ask first and provide informed consent. You don't just walk in and they're setting up needles like "you're getting a vaccine today" without even fucking telling you which one. I'm not a radiologist but considering the past bilateral hip impingement diagnoses with specific measurements and that some things that potentially look wrong in the x-rays like some lack of symmetry. The cartilage doesn't look too worn though so that's good. But I don't feel heard and he made no comment on the impingements. Even getting the x-rays something felt wrong, it hurt so badly to bend my hip to get a specific view. His final advice was "Start doing some stretches, come see me again in three months". I already do stretches, so fuck me I guess. Maybe I'm mad over nothing but everyone's doing fuck all to help me.

[hellyeahsickaf]

[hellyeahsickaf]

[hellyeahsickaf]

once again i had a complete stranger tell me she thinks it's unfair that i bring a service dog into public spaces because someone might be allergic to dogs. not her, mind, but "someone."

this has happened several times and i've seen entire articles and think-pieces about "the service dog problem." i've argued with college professors for my right to be in classrooms, because "someone" might be allergic. not the professors, but the ever-looming, hypothetical "someone."

these people may genuinely believe they're "just being fair" accommodating allergies, but the issue always comes down to the fact that in conversations about outlawing hazardous allergens from public spaces by banning service dogs, no other allergens come up.

i've never had a professor ask someone to leave because they're wearing too much perfume. perfume causes me potentially life-threatening asthma attacks. but i live in a world where people wear perfume in public. i can't change that, so i sit away from people in heavy perfume. i wear a mask.

i've never seen a think-piece for a major news publication discussing whether it's unsafe for people with cats at home to sit on bus seats in their clothes that are visibly covered in cat hair.

i'm terribly allergic to cats. even dander from someone's sweater could affect me. but i live in a world where people own cats and wear clothes and go outside. i can't change that, so i take allergy meds and assume my risks.

we don't ban peanuts, an extremely common, life threatening allergy, from movie theatre snacks or shopping mall food courts.

an article arguing why we should ban cat-owners, cologne, and peanut butter sandwiches from public spaces would be met with utter dismissal.

yet the conversation around banning service dogs comes up again and again, because disabled people are always assumed as and upheld as burdens at every possible turn. and if everyone can pretend it's not that they hate disabled people, they're actually trying to accommodate other people's health needs (how consider and innocent!), it's much easier to sell to consumers who just haven't thought that hard about it.

and here's the thing, if someone beside me in any of these spaces told me that THEY, not "someone," were allergic to dogs, i would happily move to accommodate both of our needs.

i experienced this same thing in 2020 when articles about plastic waste began targeting asthma inhalers, instead of, you know, the many actually useless plastic uses in the world that are actually causing the problem.

if you ever hear a "reasonable" argument that pretends to be good faith, but the bottom line is that accessibility aids and medical devices are burdening the world, please think critically!

[hellyeahsickaf]

Lactaid is like the super star powerup in Mario. I will not elaborate

[hellyeahsickaf]

comorbid disorders are either like "yeah ok, makes sense" or "what the fuck"

adhd and autism having a high comorbidity rate? yeah checks out

adhd and autism both having high rates of comorbidity with hypermobility and GI issues? thats an evil curse

[hellyeahsickaf]

[hellyeahsickaf]

[hellyeahsickaf]

[hellyeahsickaf]

Brain fog feels like cotton balls behind your eyes, packed so tightly that it's pressing on the inside of your skull until it hurts and just might push your eyes out. It makes words feel like you have to wade through molasses just to get from one to the next. Your train of thought hasn't even left the station yet because the conductor fell asleep

[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!

[hellyeahsickaf]

I do have one addition that's been surprisingly helpful and is beneficial even if you're not disabled. But it's good to know especially if you are and struggle with food going bad before you can use it.

It seems obvious but keeping your fridge and freezer at the right temperature is so beneficial and also just important as far as food safety. I find that there's so much less food waste after getting thermometers, especially ones that are marked with the range that the temperature should be. Even if your fridge/freezer has a built in thermometer, most people don't know what the ideal range is. A refrigerator is supposed to be no more than 40°F/4.5°C, and the freezer should not be warmer than 0°F/-18°C. Staying within that range has kept some things from going bad for days, even weeks longer than before even if it's just a few degrees difference.

Cooking While Disabled

One of the things I miss most about being less disabled is cooking. It was one of my favorite things to do and something I've always been good at.

On good days there are things I can do that make it easier. It's not the same as before, but I hope that sharing what makes it possible for me to cook helps others who struggle with it.

Tips for cooking while disabled:

You can incorporate precooked food in your meals. For example, stir fry with precooked rice with the ingredients of your choice, or taking frozen pasta (like the ones with maybe sauce and a couple other things) or plain microwave pasta (I prefer these, but heat it first) and putting it in a pan adding other ingredients like vegetables, cheese, garlic, etc

If it comes frozen or canned that can really help. Frozen rice you can just microwave, frozen cut veggies and garlic and onions are good as well

Buy a chopper with different shaped blades, spiralizer, electric slicer/grater, food processor, or any appliance that will save you energy. Ideally machine washable. Stand mixers are also better than manual ones. Especially helpful if you have joint/wrist issues

You can always prepare ingredients ahead of time. I find that sometimes it helps to prep (chopping or mixing ingredients, etc) earlier in the day or even a day before. Then you can put it in the fridge or freezer until you're ready to cook the full meal

Look up easy recipes or recipes for elderly/seniors. With the latter you may find more nutritionally balanced food but an unbalanced easy meal is better than none

You can sit while you prepare ingredients.

You're allowed to take breaks. You can turn the stove off, maybe put a lid on it to retain the heat, sit down, maybe take something for your symptoms. Some things you may not be able to stop in the middle of like making pancakes or deep frying something, but if you're making soup or curry or chili or something, often you can turn it off for a bit and take care of yourself.

If you need help and can get it, please ask for help. I know many of us need to work on asking for help including myself. Even if it's just washing the pots and pans or chopping something. You are not a burden you hear me?

Stretch before and after cooking just as one would before a workout. It will likely lessen any joint pain or stiffness as you are still exerting yourself

Listen to your body. Just as you're allowed to take a break, you are allowed to decide you won't be able to finish what you're doing. You may put away your food before it's done (if this won't ruin the meal). You are allowed to leave a dirty pot in the sink and come back to it later (just make sure you or someone else does before it gets gross). You can wash them in the dishwasher. I know this is bad for the seasoning on pots and pans but you can reseason them to be nonstick again and use nonstick spray

You can buy seasoning mixes rather than using individual seasoning. Instead of parsley, oregano, basil, etc you can buy Italian seasoning. Instead of paprika, pepper, cumin, oregano, salt, etc, you can just get taco seasoning. This may sound obvious but it can save a lot of time and energy

An issue I have is buying perishable ingredients thinking I can use them, having a bad week or two, and the ingredients have gone bad. Try to plan out your meals before shopping and ask yourself if there's an easier alternative for any ingredients. Maybe pre chopped fresh onion instead of a whole one, sliced mushrooms instead of whole, frozen vegetable blends instead of individual, powdered ginger instead of the root, bullion instead of stock that you may not be able to use all at once. I know this is like one of the other points but these are what I find most helpful

Use supercook.com! You input the ingredients you have on hand and you'll get a list of recipes you can make with what you have. Often there's a wide range of complexity and difficulty

Make enough food to freeze or refrigerate leftovers. It helps if you can portion it into single servings in Tupperware or freezer bags. You can prepare frozen burritos for your next few lunches or dinners, separate portion sizes of spaghetti, portion salads, etc

Feel free to add any additions!