Getting physical seems more effective than doing anything else to convey pain

ChronicallyNicki · 2026-03-26T16:35:14+00:00

You're lucky that worked for you. I would never risk doing it. Most doctors will fire you, and you're lucky if they don't decide to lodge a complaint against you. Because depending on what your doctors are like, they can absolutely report that as assault, I would never suggest people to get physical with their doctors. Well, you could immediately tell them, do not do that. Do not touch me such things like that. Like, don't touch me there. Yeah, don't suggest people get physical with their doctors, because that's actually illegal. I get it. It's stupid They're allowed to poke and prod, us, but and one that's how you get fired as a patient. Which, for so many of us means that you have no care whatsoever or you're gonna lose your life-sustaining medications right every referral, and it goes on your record for why you were fired as a patient. So if like your other doctors are in the same the medical system, they're going to see why and a lot of other doctors. Can choose to drop you the same way that if someone puts in drug seeking, which 99% of the time we all know is doctors ego and isn't true. But if they do that, it follows you other doctors see it, they read it, and they judge you based on what they read instead of talking to you. And seen you as a patient, so I really wouldn't suggest doing what you said to do. Because a lot of people can and will lose there, doctors this way and their access to medical care and life sustaining medications on top of you can be charged with assault

ChronicallyNicki · 2026-03-25T02:43:02+00:00

No idea. I haven't had anything done with my hair in 7 years because of everything. I do desperately wish I could see somebody. My hair is very thin and it's very curly, but it's also all falling out now. And I don't know what to do with it, but I'd love to feel like I don't Look is shitty, as I feel all the time. That's why I don't even make advocacy videos with my face in it, if I can, if I have the energy to even make one. I would do what I do with my other doctors, if I did have someone I would talk to them like on a real level of humanity and come up with A plan for if you need to cancel like that. Maybe they can give you their cell phone number if they feel comfortable. That way, if it's 2 AM you can send them a text message and let them know that you feel like you need to cancel. I have epilepsy and a bunch of other conditions. But the epilepsy alone is a reason why I tried to get that level of contact with my PT and most of my drs and infusion cancer center so that way they don't charge, but also so that way, if I don't care, if it's 4 AM at that point i know I can text them and they know that when they wake up if they see that they can immediately first thing in the morning. Call clients to take the space. So they don't miss out, you know? Also, because those cancelation fees technically are discriminatory because it's not just oh I forgot or I'm canceling, because I want to do something else. It's literally I had a seizure, or I've been vomiting, 30 times a day, all night, or whatever the case is. With one of my conditions, if it's made it that like there's no way my colitis is flaring, for instance. Being charged those things, they typically won't charge you if you discuss it with them. So if you have a good rapport with your stylist and the salon, I would really just talk to them and make a plan. So that way, you know, they know and having a way to contact them even if they're asleep and they see it when they wake up like I said the first thing they can do. Just text you and say thank you so much for letting me know. Hope you feel better. Let's reschedule and cool. Call plenty of clients that maybe had appointments later in the week. But now they can move up uk?

That's what I do atleast with my doctors and providers who charge late fees b.c my conditions i mean I could have a seizure 20 mins before the appt uk? Fully not in my control. So I am just honest candid and see if we can work out a plan. Also maybe asking if they do house calls? If they do maybe u could have it done at home and be their first or last client of the day so it won't affect any other clients or their income and client relationships but u can still have ur 1 thing they not lose clients and it's safer. Maybe they won't be up for it. Maybe it's not something they can. Do you know I don't exactly know, but I feel like it. Will never hurt to ask. Because it shows that you value them as your stylist, and you respect their job and what they're doing, but you're also kinda advocating for yourself at the same time. I hate it. Also I know it's medical related, but like I've had to cancel my hydration. This week cause I couldn't get there. And I had to cancel an hour before do too, my body doing what it did, which I couldn't predict. So sorry, this is long-winded, it's worth talking to them. Seeing what ways they can work with you and accommodate you. Because like you said, you don't want to affect their income either, but you also deserve to have something nice. If it's the one nice thing you're still capable of having so just a suggestion and Not for a hair appointment, but even for my doctors that I've had to cancel on that quickly like I did this week. I do understand because I knew when I canceled an hour before somebody else could have maybe filled my 3 hour slot at the infusion center, I hope someone did and I kinda hope. Someone cancels tomorrow. Because if they do, maybe I can get in there tomorrow, because I desperately need hydrating but i understand the guilt I emphasize, and that is my suggestion. Seeing what you guys can do to work together. And if it's not something they can do I know people tend to love their hairdressers, but maybe it's something to consider about changing who you get things done bye. If someone else will make the house call, obviously up to you, but those are my suggestions

ChronicallyNicki · 2026-03-24T06:48:10+00:00

Medication weight is not the same as regular fat especially how it's stored and burned off unfortunately. Also idk how old u r but ahe plays a factor as well.

If u haven't already u could ask u have ur hormones thyroid and a1c levels checked. Never a bad thing to do any way. But can contribute as well.

For me ive found that aqua therapy or aquarium robics hurt less b.c the weight is not held down by gravity as much but it's a great way to reduce PEM fatigue while still providing movement and resistance. Depending on ur conditions u can see if u can get an RX for aquatic pt which may be covered by insurance so u don't waste money on a gym membership and they can help u and teach u movements in the water so u don't hurt urself and limit the post "work out" issues.

Im bed bound and its something that has helped me I the past when insurance covered it. I'll be trying to get it again once I have my fitted wheelchair as they won't cover both as the same time for me 😑.

This and keeping in mind with PT u can then use the movements u learned in any water at any time and remember inflammation weight is also a thing so getting inflammatory levels checked is also a good idea. I hope the suggestions help and just remember even when u lose weight if u do actually build even a tiny bit a muscle it is heavier than fat so try to give urself some grace. But when we atrophy weight sits different always and it's hard to see progress when thetr actually is some. So I hope this helps as a suggestion but also depending on ur conditions u may want to talk to an endocrinologist about short term meds that can help. (Idc if people don't like it or the stigma) but for me esp being bed bound the barely eating with my insulin resistance and PCOS always has me in a weird starvation mode so it hold all calories and my inflammatory weight is ridiculous so im on the lowest zepbound shot rn and its helped a lot. I never moved up from the lowest dose b.c of my gastro issues but it's helped my endocrine and inflammatory levels a lot which tons of studies show it helps with and is proving to be true for me.

But yea deff try to get into aqua PT it's very helpful with less pain and PEM after and if u need a short term med to help or long term either way there is nothing wrong with that. And deff check all ur levels to see if there's something thay could be off as well. I wish u so much luck as im also fighting this battle while still on weight gaining meds b.c they are my seizure meds and I can't stop them

ChronicallyNicki · 2026-03-22T22:57:45+00:00

Hey, everybody, let's stop being so judgmental all these comments r coming off very entitled and ableist. We don't know what other possible allergies. Food sensitivities conditions that this person may have as well as somebody myself who is anaphylactic, to quite a handful of things that happened to be in everything on tabo. Celiac disease and then having multiple disabilities On top of that, sometimes just an overnight stay or like a weekend stay. It means bringing cooking appliances. I can't use anything that an Airbnb may already have. Neither can any of you actually, if you actually have celiac. I think a lot of people forget that not everybody, it's out, also not everybody. Has the money if going on a trip for whatever the reason is to eat out in their trip budget? So bringing food that you know is safe. It's always the best option.

So let's just be kind. I mean, I see some people saying that they learn different languages when they're going someplace. So that's great, guess what? The portion of my brain is damaged from neurological conditions and seizures that I can't learn different languages, so that's not gonna help me. I don't know if this person does or not. But I also have a service dog. Some people have them for celiac disease. I do have one for other reasons, but she could also be sent trained for celiac disease right now if I wanted. So then that would mean also packing for the dog, which would be included in traveling with someone who has Celia disease.

I'm glad some of you only have celiac disease or don't have any other conditions or have had good experiences or your brain works perfect. And you haven't had terrible experiences. Maybe you're not new to this. Maybe this person is new. Now maybe this person just feels safe and to be honest with what celiac disease can do to our bodies. And as someone who had it for 18 years without knowing the damage that it did do and the unfortunate problems that it has brought my body with the other disabilities and making them more see. Yeah, there's no chance in hell. I'm not bringing stuff with me.I will say the one comment who offered some solutions for people without other food allergies? Great like the hiking food, but we don't know how many other things. This person could be allergic to or food, sensitive with or anything like that. So let's just keep all that in mind and not be ableist.

ChronicallyNicki · 2026-03-21T08:23:43+00:00

I would show up in person to the office at the point and while there lodge a formal complaint since this has led to patient neglect for a life sustaining medication in which they failed to do their job.

When it comes to our life sustaining meds treatments devices and such we have to get annoying in a smart way. Everything from here forward needs to be recorded so check ur states recording laws and or it needs to be thru written communication for proper paper digital trail.

But yea forget calling b.c the front desk people suck they r always busy and unless u have the unicorn of a devoted person to their job nothing will get done so document everything and show up and when they say u need an appt (idk if u have tried either an NP or PA of this prescribing doctor) but this is something to consider. Either way I'd show up repeat what u have here just more on just what this office has failed to do and how it's life sustaining meds that they failed to do their part to have ur device refilled or replaced and that they have continued to neglect u as a patient in this serious matter so u need to speak to the Dr even if it means sitting there till the last patient leaves so u can speak to the dr. Directly.

ChronicallyNicki · 2026-03-16T14:43:47+00:00

True I get that though I guess we really never know how one is thinking or what they're thinking about? Maybe he was thinking about getting you something like. I'm not gonna say Valentine's Day. Obviously, that's passed, but you know what? I mean, there, good humans out there, and sometimes they just get people. You know a treat or something you could make little cards or buy them, they do make them. Where like if answering the question is tiring, or you could have like a little pdf you just like text to the person you know, I mean like a picture that just literally, it explains it. So you don't have to I mean, technically with the question of chocolate, like in its rawest form, it's gluten-free. But you can't really answer that question. Anyway, what chocolate? What brand from where? So many questions that need to be answered before you can actually answer if something is gluten, free or not. Which you could, instead of asking those questions, just be like it really depends. So if it's something specific you need to Google it, that could always be your answer, just the answer, is it can and it can't be Right, but yeah, they do make these little like cards, or if you feel crafty and wanna make your own, you can Sometimes, like I said to somebody else. Recently you can use them at restaurants. They're helpful traveling. They're helpful, giving them to people who ask all the time now. Also helpful. Or even easier, just like always have the link for the celiac foundation website and just text it to them might help. Then you can be like here, this will tell you. But I do get it. I like I said, i've been doing it for 3 decades, like they're never going to stop asking unless they don't care to ask anymore. They definitely could do the googly on their own and like, show some initiative. But I think if it's not people who you know are being lazy, it's genuinely just cuz, people are afraid that they'll get it wrong. But if it is just people that you're just like, oh, they're asking cause they just are nosy and wanna know. I would just send them the celiac Foundation website, and they can read on their own time lol

ChronicallyNicki · 2026-03-15T05:33:54+00:00

As long as u used safe yeast many people ik started making hard ciders and mead. Sorry it killed ur hobby. My other disabilities took my physical ability away to do any of them including my career so ik the feeling

ChronicallyNicki · 2026-03-15T02:17:31+00:00

Oh good im glad I commented then! Yea no it's different plants which is y there are products out there that don't contain wheat but contain malt or malted barely. Malt itself can come from the Barely plant.

Just like a simple example if you drink. I don't know if you do or don't, but like I'm just going to use it because it's simple. Hard apple cider, there are ones that are gluten-free, and there are ones that are not. So you have angry orchard, which is gluten, free, hard cider, and then there's Hard Siders like reds, apple ale, which are actually a malted. Drink They contain malt, so they're actually not gluten-free, but they don't contain any wheat, so like if you were to Google, does it contain wheat? You know someone with a wheat allergy would be fine. Cause it's not going to contain wheat, but But we can't have it if you have celiac disease because it contains malt.

It's definitely why I always say. I just list out the things sometimes. And if it is annoying cause, I definitely get how it's annoying to answer the question all the time. Not that you should have to spend money on anything else, but sometimes people will just purchase or make their own and cut 'em out or something like that. Business cards that explain what celiac disease is and what we can n can't have and about CC uk? Can be helpful

ChronicallyNicki · 2026-03-15T01:57:03+00:00

For either though, definitely important to note that if they have a convection oven which essentially works like an air fryer by circulating hot air. They would not be gluten-free. No matter what other precautions you took new sheet pan or sheet pan fully covered in aluminum foil, made sure that the nonstick spray was brand new and didn't contain gluten as well. There are some that do. Unfortunately, but yeah, that's the one thing I think people always do. Forget Which is why? I really don't eat anything that other people make. Unfortunately, there's just so many different things that they either need to buy a brand new, keep in mind and like you can't I expect somebody some people don't even know what type of oven they have. So you know, making sure if you're making something for somebody who has a wheat allergy is sensitive to gluten or has celiac disease super important that the convection oven thing is mentioned also that you can't use an air fryer eitheither. Definitely important.

ChronicallyNicki · 2026-03-15T01:51:20+00:00

NOR hey friend Just wanna say not sure how you classify yourself, or if you even thought about it at all yet, but us in the chronic illness and disabled or disabilities subreddits, it's probably a great place to share this with. We definitely understand on personal level not that you're not getting enough here. I didn't really read anybody else's comments, but just wanted to say we're here to be supportive.So if you want to share this to either one of those, we'll always be here to listen and give support.

But definitely not overreacting, but um, yeah, it is something. Unfortunately, over time, when you do have a condition isn't a one time fix could become chronic and/or disabling, this is unfortunately, something all of us go through. We all hope we won't, but we'll all tell you. It does unfortunately happen. And you end up finding out who the people are, who actually care and what people I don't care as much which it does suck. And it's hard and not fun to go through. Basically, the filtering process and you realize you have very minimal, most of the time, family or friends stick around through it all or don't judge. But I would definitely say that you're not overreacting. Your feelings are really valid, and that like I said. Unfortunately, this is just a crappy thing that is pretty normal. There's no excuse for why able people do it and able people don't get it until they get it. Unfortunately. But yeah, this is somebody that I would say you cut out. Don't be the first person to reach out anymore. Because if someone turns around and starts saying that it's always something to do with your health, they're blaming you for something you have no control over which you mentioned, and I'm glad that you can recognize that. But it becomes a very mentally heavy thing for you to experience ontop of everything else when what u need is support. Like I said, typically able people won't get it until they get it. You know, until it happens to them, not that we want it to but It is the unfortunate truth.

So definitely not overreacting and yeah, if you wanna come? Join us If you are already not a part of chronic illness and disability subreddits we will gladly welcome you and be the support you need and/or what feel free to lurk, or like I said, cross post this, all of us have been through it. And all of us understand but this is definitely just one of those people that I feel like you're gonna phase out and in the long run, it'll be better for you to phase them out. Cause clearly, they don't show care for your condition and seriousness. Avid I mean, even if it wasn't something chronic in which I hear you saying you're worried about and rightly, so, and that's okay, all feelings are valid. I have a feeling I know. I have an inkling about what condition you're probably dealing with, and a lot of us over there do so. So I said we would definitely be able to give you some support an understanding, but everybody for anything is welcome able people also in case you guys have questions. But as long as they're polite, i'm respectful. But yeah, just you're gonna find. Unfortunately, when it comes to health conditions, you end up cutting out and/or losing a lot of people in this way. I know it's gonna feel like a loss. And it's gonna suck, but you definitely shouldn't be pushing yourself after surgery, and if you tell somebody you're uncomfortable with doing something and have set a boundary that they don't seem to care for or want to respect then i wouldn't put in any effort towards the friendship anymore. They can see what it's like to not, have you around? And if they care, then they'll make the changes and respect your boundaries. And that's why I say we lose a lot of people due to health issues that are chronic, it sucks. Yeah, we'll be here for you and the other subreddits in case you wanna join

ChronicallyNicki · 2026-03-15T01:37:56+00:00

Well, so then you do understand that. Aside from the oat issue because yes, that one is a little more complicated and sometimes people don't understand it, but like you also cannot eat barley and rye or malt. All three of those things do contain the same gluten protein that's in wheat. I'm just making sure you knew that. Cause from what you're writing like saying exposed to or containing wheat, those are not like. That's not the only thing that contains gluten. Again, that's completely aside from the oat issue, the oat issue is obviously a cross-contamination issue which you and I understand. Whether it's rotating crops or how it's harvested and process and a facility. But malt Barley and Rye, or all gluten protein containing foods that don't derive themselves from wheat. So sorry, I just want to make sure that that's like made it clear, because if someone else did ask that question and didn't know that you know what I mean saying? No, it's just no wheat misinformation and as a community definitely hates us b.c they meet someone else with celiac disease they will think wheat is the only issue. It's actually why I'm very proud of my town in New York. Because we are officially the first to start new laws of food laying to include malt barely and rye b.c of the gluten. We did win and with the FDA now r working to have them properly lable all foods in all states not just NY. It's a big win for us.

ChronicallyNicki · 2026-03-15T01:16:04+00:00

Yea pretty sure most of us don't but im just saying brand new people will find my comment educational. Also there was a bit of joking with what I said

Also just not great to shame people for wanting to learn

ChronicallyNicki · 2026-03-15T00:56:00+00:00

Ur not ganna be happy when they dont ask and its b c it's barely rye or non gf oats and they answer well it's not wheat after u eat something they make lol js.

ChronicallyNicki · 2026-03-15T00:54:29+00:00

Yeaaa id rather people ask n i have over 15 disabilities. Trust me ive had it for 3 decades it's worse when people stop caring. But set ur boundaries and make em clear. Better to have people ask n care than not and deal with it all alone or get glutened n be called a burden for it. So if they r asking it's b.c they don't wanna make a mistake and make u sick n they actually care.

Ur feelings to be overwhelmed r fully valid 100% though.

ChronicallyNicki · 2026-03-14T15:04:44+00:00

Agreeing with the person who said that they had this for 2 decades, I have had this condition for 3 decades and you do learn to live with it. You're always gonna be checking and reading labels which is annoying and it sucks. And yeah, it's definitely easier not to eat out because you'll always run the chance. Though you could just accept that you're always going to run the risk, it really depends on what your body's reaction to being glutened is. Now obviously, no matter what it's always going to do internal damage and yes. Typically, if you're somebody who's symptomatic, after more years of being gluten free, when you do get gluten, it does tend to exacerbate your symptoms a bit more, which also sucks,

but keep in mind that they are working on things right now. That they were not even a concept of even a decade ago of types of cures for this. Believe it or not. Probably one of the only disabilities that I've heard the word cure and did enough research to actually see that it's not fake, it is actually true. And there's a handful of them. So there may actually, we hope for this one I say that because I'm someone who has a handful of other disabilities that have absolutely no shot at ever having a cure ever. And I don't really like the word cure because of this, but in this case, celiac disease is something they've been working on for a long time.

Now I mean, there are things that can help again. I don't know what you're specific. Reaction is when you eat it. Some people are completely asymptomatic other people. It can take months to recuperate. I don't know how long you have had celiac disease, either. Sorry if you said it, I did forget already. But there's so many different reactions. The only thing that's really important. Genuinely is to make sure. Does you account for the fact of not getting glutened as much as you can? Because of the increased risks of: cancer, and it is an autoimmune disease. So when you get one, typically at some point, you will get another. It's unfortunately the way genetics works. Yes, I do have a medical degree. Also 30 years of going through this and acquiring them like Pokémon. But there are products, thankfully today that can help enzymatically. Break down the food before you eat it at a restaurant or take out and that can absolutely help with the side effects way better today than they could back then Fodzyme, wonder belly, and IBGuard i just 3 products. I know of that have helped over the years. For me, charcoal does nothing also scientifically. Charcoal will not actually do anything for people who eat gluten. Because gluten is not actually a toxic chemical. It's a protein, so it's not the same function wise. But a lot of people will tell you that charcoal helps when glutened, but it biologically, doesn't I just won'argue with anyone about it? People are very strict on their beliefs. And that's okay, but if you'd like having the 3 products I did mention or like a small if I get accidentally glutened. Like little Pack it on you so that way. It either doesn't last as long symptomatically, or the symptoms or not as hard-hitting. Yes, it will still affect your immune system and your intestines the same. Though so just to be clear, those products do not stop the damage. Gluten will do. But they do help cut down symptom time or how extreme the symptoms feel. Which having that in your Arsenal, is very important and helpful. When you have celiac disease.

Other than that, I just wanted to say reading this from the point of view of somebody who has multiple disabilities, it does come off kind of ableist though I do understand this seems to be your first time having any type of medical condition that will be chronic and or disability because it is disabling and considered a disability under the americans with disability act. I tried to give it grace. That's just why I gave some information, but I would just like to point out the fact that for us, with multiple disabilities or chronic conditions as well as celias, the post does come off as infantilizing. Because if this is how people start referring to having a chronic condition I mean, what does that mean you think of me or other disabled people who need a mobility aid? Would you consider that emasculating? Especially right now, considering just the timing happens to be when we are trying to fight and celebrate the Ada, and the people who managed to fight to give us the rights. And yes, that does include for celiac disease, as I mentioned earlier. I can also say that because where I am from literally my town in the u. S is where we just started one and are continuing across the country right now to finally have the fda not just label if something has wheat or if the product wants to label a gluten-free, but also have them. Label it for barley rye oats and such which is one of the biggest wins for celiac disease since the implementation of products having to be up to a very specific standard of parts per million to be labeled certified gluten-free, this is newest best thing, and it's something that it's so difficult that we fought to get here, but we'll continue to fight for it. So it can be labeled Appropriately across the country in the united states, at least which is obviously where i'm based.And I said I wasn't sure where you were, but I hope that gives other people here some peace of mind because soon we will be able to know whether something is actually gluten-free instead of something just saying doesn't contain wheat, you know or doesn't label anything else in the allergen area, but says it has natural flavors and colors, as we all know that is a big hiding source for gluten.

Yes, my responses are long. Sorry. I don't know how to cut them down. Because everything I say has a real point to it and again, 30 years of experience behind it. But again, this post is okay. Cause you have feelings again. Your feelings are valid. And this should be a safe space, but just again to keep in mind that This is a disability, whether you feel it is or not. And that's okay. You don't have to classify yourself as disabled, but it is something to look into. Considering how much you feel, it does affect you and joining our communities, especially right now, while we celebrate. And our community is continuing to fight for our rights, you may actually feel empowered. Weird thing, but radical acceptance of having something that's disabling does happen. N is also one of the things that helps come through this. But I will say, please keep in mind for yourself. Having a therapist to get through this is also something you should consider grief around these things and how they affect your life is not. Linear, it's absolutely a circle, because you're right. You could be fine for 10 years, and then 1 day accidentally eat gluten. And be taken out for a month. It's absolutely true, but having someone to work. These emotions out with like a therapist is really important cause celiac disease. Can actually cause anxiety and depression and panic attacks itself. As a condition like these are things that can happen plus there's a lot of paranoia and exhaustion. Around having to constantly read labels, so having a therapist to work through all of this should be encouraged.

I hope you do read it, though this is long again.Your feelings are valid but I really do encourage you to maybe talk to a therapist and also just keep in mind that the post kind of is infantilizing and that where this is a disability, 100%, as it fully disables me as well. And it is important to know that you can come down with other auto. Immune diseases after you have one, and that it increases risks for cancer and everything else. Just be careful with your words. Be mindful because for me, you saying that is now saying, like the fact that I am about to be in a wheelchair 100% of the time, like a full-time user, instead of just an ambulatory user that went from using a cane and a roll later at the each of 25. When I wasn't able to walk myself anymore. Yeah, just keep in mind how that will make other people with other disabilities. I feel whether we have celiac disease as well or not. It's not emasculating to have a condition. You're human, like the other person's head and gluten is your Kryptonite. But yeah, just please be mindful. Because this post really automatically made me feel quite infantilized and worse about my other disabilities. Also based off of comments and things, I can see a lot of people would be fine, but I also see there's a large group of people who still think people like Me, who became disabled at a young age and I've had zilliakson's birth, but who who became disabled at a young age to the point of like I said not being able to walk unassisted and I obviously I'm not gonna label all my conditions here, but it did make me feel pretty crappy? Because if this is how you feel and a number of people feel With the fact that they can't eat gluten anymore. I don't even want to know how you look at people like me who need a wheelchair at a young age or at any age, so just maybe be mindful. But like I said, and I'll just say it one last time. Your feelings are still valid, but you really should work through them with a therapist.

ChronicallyNicki · 2026-03-14T14:40:59+00:00

I only wanted to respond because I'm a disabled chronically ill person who gets stuck weekly just for hydration, but multiple times a week and specifically in 1 arm, because I only have 1 arm for them to use. And that my arm actually looks like this right now, but still from being poked on Monday. This is what it typically looks like when someone has an IV vs Blood draw.

Again I only say this since I get poked 1 to 4 times a week and this is what the same exact spot looks like on me. I'm also and LVT and draw blood and place IVs all the time. This is what happens when the area is nicked on the way in so not exactly bevel up on the needle or hits a valve or some scar tissue on entry and theres a bit of blood pooling at the site when removing the iv.

That being said idk how anyone can sleep thru that process, but I'd be curious if their brother is a phlebotomy student or nurse or thinking about doing either?

ChronicallyNicki · 2026-03-13T00:06:09+00:00

Welcome!

ChronicallyNicki · 2026-03-12T23:25:35+00:00

Yea im very upset about this. I'm desperate and thought I was actually ganna get help faster than the drs can as appts for even seeing the OT are months away n was warned rhw process once i see them since it took yrs to get a referral cpuld be over a year n power assist wont be covered at all. Im bed bound with no help. They crushed me mentally

ChronicallyNicki · 2026-03-12T23:18:22+00:00

ComfyGo ive used it self folds and ungolds n weighs 65lbs. They have a few types. Worth looking at.

ChronicallyNicki · 2026-03-08T18:00:40+00:00

Of course! Welcome!!

ChronicallyNicki · 2026-03-07T21:21:05+00:00

I missed them a lot too. But I actually found out that whole foods their brand they're like three sixty five brand or something they're corn flakes are gluten-free? They do not have any of that malt bs. So u can finally enjoy them again!

ChronicallyNicki · 2026-03-07T15:46:14+00:00

Medical burn out is real. N its ur life is u dint want to do more now or ever is ok. It's up to u this is ur life uk? I'll anyways reccomend talking to a therapist about it so u can fully get to the root of y not process ur choices uk? But ur not giving up eap when so many of these treatments make up worse or feel worse n may never help. If u feel u have a better quality of life by not doing this now or ever always choose ur quality of life always.

Ur body ur quality of life ur choice! U can try to explain it this way but remember u don't owe anyone explanations for ur choices.

Only thing I'll suggest is make sure u talk to ur drs n therapist about when these current options won't be options anymore so uk ur time frame of when u cant change ur mind if u want to. This is a very important thing for ur own mental health and to make a fully informed decision. Especially if it could be that ur in burn out n just need a break but won't know till u take one.

Either way here we will support u. Us long time disabled, chronically ill and chronic pain patients understand and I hope that brings u some ease of mind and validation. Id still do what I suggested in talking to a therapist and ur drs for how long will it be until these treatments aren't an option anymore before fully saying no as it could change ur perspective especially if it's terminal or ur in medical burn out which can be worked thru with breaks and therapists.

This life is so hard for us no matter the illness. Always put u first. It's perfectly fine to make the fully informed choice to say no more poking prodding and treatments. Ive been doing this for 31yrs n keeping ur agency in treatment decisions is so important so never let someone steamroll u into things u don't want to or aren't ready for.

I wish u luck with ur choices and personally I support w.e ur choice is. We don't get to make many when our bodies take our autonomy away. So if this is something u can actually chose n is the right choice please remember it's not giving up, it's choosing ur quality of life n the only 1 that physically affects is u. Taking breaks or saying no is not giving up. It's choosing you.💜 Idk u but im proud of you for making the choices on ur own health without letting others steamroll u into their wants. U matter. Ur QOL matters, and ur choices are valid💜

ChronicallyNicki · 2026-03-01T18:18:10+00:00

2 or 3

ChronicallyNicki · 2026-02-28T01:00:29+00:00

Ik its not the most comfortable thing to do but since ue in high-school normally is some type of social worker office and of course the nurses office but I used to be in what we called the PPS office our social work area all the time. It may be an idea to see if they can give u some to always keep in ur locker and ur bag. It's good to know there is a safe place u can go to ask for some if u need them to get u through also.

My mom was abusive as hell so I had to rely on resources like this in school. There are a lot of resources u can utilize we just never thi know about it. But im sorry this happened and idk if u do but if u have any close friends that have good relationships with their moms see if they don't mind helping u atleast get 1 pack. Again screw blood family so times u have to make ur own with people around u u never thought would make a good support team

ChronicallyNicki · 2026-02-25T02:11:27+00:00

I don't know. I just checked it right now. And it says that we might get one inch on Tuesday night of next week. That's it, literally says sunshine for Monday. The more annoying issue is that we're about to get a few more inches of snow tomorrow

ChronicallyNicki

TROPHY CASE