#but my gastroparesis keeps telling me no | Explore Tumblr Posts and Blogs

oliveasaltylife · 7 months

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[malnutrition, food, medical diet, weight discussion]

My entire body hurts so bad today and I am so exhausted despite having like 10 hours of sleep. My body and nervous system are so overwhelmed from malnutrition on top of my usual complex chronic illness stuff and it is seriously difficult to come out of it. The intense fight or flight response that I’ve been in for months feels never ending and nothing has really been able to calm me down. I was always aware of physical effects of malnutrition, but my level or anxiety is higher than I’ve ever experienced and my dissociation threshold feels nonexistent. And the worst part is knowing that food will help, but if I overdo it I’ll end up in the hospital again with significantly worse symptoms.

I’ve unintentionally lost so much weight over the past few months because I haven’t been able to eat normally and I don’t tolerate my Soylent meal replacement shakes anymore. It’s quite scary watching my body change like it is and that definitely confounds my anxiety. I’m really glad my pcp was able to get me a prescription for a meal replacement shake because I really don’t want a feeding tube and am doing everything that I can to avoid one. I just really miss food and making meals, which is making my medical diet more difficult. (It helps knowing I absolutely can not tolerate the pizza I really want, but it’s just hard restricting myself so much).

And it’s so fucking difficult to actually hydrate myself and stay hydrated even *with* IV hydration. I am really so miserable and in so much pain and so nauseous.

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kittenofdoomage · 9 months

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I should be happy I'm fitting into my favorite dress again but I've lost nearly 20lbs since the start of June and the doctor just keeps telling me to be happy I'm losing weight, like dude, this is not sustainable, I can't eat bc I just feel violently ill afterwards?? I'm surviving on a pack of cheese puffs and a bowl of porridge a day rn, small pieces of fruit here and there. All signs point to gastroparesis (and I'm diabetic, so that makes sense) but doc's like "nah, you're just fat, it'll get better"??? She threw some metoclopramide at me but it hasn't done much tbh

(I'd like to point out I was barely over 200lbs when this started, and they sent me to this dietician who wanted me to lose 5% of my body weight before November, and I've already dropped 10% so what now?)

#personal #weight loss #health

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meadowsystem · 1 year

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💙 my heart is heavy with this one 💙

I have consistent nervous breakdowns over knowing this is my life. But yet I know many have no idea about the things I'm about to tell you.

Cyclic vomiting syndrome itself is not truely life-threatening but the complications that it creates can be.

I'M BEGGING FOR HELP!!

They do not provide enough accessible treatment. For complications I face from this rare disease.

I am unable to keep a job as I cannot work during vomiting episodes. Lasting anywhere between hours to days. Not including the recovery time needed after the episode is finished.

IT IS DEBILITATING.

Workplaces refuse to hire me when accomodations are asked due to this disability making me "unreliable". If you don't tell your employer and you miss too much work, your let go for being "unreliable". Finding a workplace who will accommodate you and provide consistent wages ... is unobtainable.

Accessing proper insurance coverage needed to make this rare disease manageable is unobtainable due to the plethora of needs we require to have met. Even when on welfare or disability.

Those who are not able to manage the triggers are pushed out of the workforce and forced to fight to get disability. Often unable to obtain federal disability as it isn't "as bad as cancer" as I was told... even with my other plethora of diagnoses that made my doctor feel it was my best course of action.

Not only dose this rare disease have complications of dehydration, damage to the esophagus and tooth decay. Most with this disease also suffer from other conditions (comorbidities), particularly other functional issues. Some of the common functional comorbidities to CVS include migraine headache, chronic fatigue, irritable bowel, gastroparesis, depression, anxiety, POTS and/or other forms of dysautonomia as well as neuromuscular disease include intellectual disabilities, autism, seizures, and/or hypotonia. As well as mitochondria dysfunctions

Incase you don't know mitochondria dysfunctions means your body cannot efficiently turn sugar and oxygen into energy, so the cells do not work correctly. This can affect different parts of the body: the brain, kidneys, muscles, heart, eyes, ears, and others. Organ dysfunction can be a very real possibility. Organ failure is organ dysfunction to such a degree that normal homeostasis cannot be maintained without external clinical intervention.

I have been diagnosed with 8 and counting of the comorbidities. These comorbidities have their own comorbidities that have also been added to my list.

Many doctors are under educated on CVS. Often those with CVS are not properly diagnosed, even with symptoms at a young age.

Many doctors tell us to figure out our CVS triggers to manage the disease. In my case I have so many triggers due to my plethora of diagnoses/comorbidities that my CVS is incredibly difficult, even unrealistic to manage even with proper medical support. (So many overlapping, environmental, situational, medical, life triggers... so many triggers not on this list and still more unknown triggers)

THIS IS MY LIFE! THERE IS NO CURE.

They're are only underfunded small individual research/studies. They have not found a cure. We don't have proper support and thus we suffer. Look at this link ... the lack of information

https://rarediseases.info.nih.gov/diseases/6230/cyclic-vomiting-syndrome

I SUFFER.

My disadvantages have been continually coming to light. My realization I likely won't be able to achieve basic life milestones has been heartbreaking.

Medically assisted suicide is easily achievable even in even minor cases of CVS. While there is little to no support and even less accessibility.

What options do those with this disease have?

Suffer or give up ...

I'd also like to finally note the journey to diagnosis is horrendous. Doctors diagnose cyclic vomiting syndrome based on family and medical history, a physical exam, pattern of symptoms, and medical tests. Your doctor should perform medical tests to rule out other diseases and conditions that may cause nausea and vomiting.

-add on the factors of age, ethnicity, gender, life style, fashion choices, preconceived assumptions ... the list goes on ... the journey to diagnosis often feels unbearable-

If you have read this please comment, I need some validation.

💙

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emetogirl · 1 year

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could you explain how it good it feels to puke? like, describe the feeling of nausea and how it feels coming up? i’m someone who is both scared to death of vomiting but also unusually turned on by it. reading how it feels to come up after being so nauseous is my favorite. :)

Hey!! I feel like I am equipped to answer this since I’m both one of those people who are turned on by puke but also can be scared of it when it’s happening to me. I am also super desensitized to it by getting sick all the time (gastroparesis, pots, endometriosis, a seizure disorder, and cfs are just a few of the illnesses I have that cause frequent vomiting episodes). So while I puke a lot and am used to it and also find it super hot, there’s still a part of me each time that finds it unpleasant despite also having the conflicting feeling of it turning me on.

I deal with nausea on the daily (in fact, I take prescription anti-emetics every day to try and lessen vomiting spells) so once I get to the point of puking, it’s bad. Like, to the point that puking is an immense relief and very much needed for me to be able to go on with my day. I can usually tell the different between when I feel sick and it is something I can deal with, and when I feel sick and I need to throw up. I usually get a pretty good lead up (like, hours of severe nausea, stomach pain, food not digesting, etc), and so for the most part I feel like it’s my choice to end up throwing up. I feel sick and recognize that puking needs to happen, and once I do that, it comes naturally.

The first two gags are usually unproductive but are part of my tummy getting prepared to get everything up. And then once I heave for the third time, that’s when I end up puking. Usually while puke is rushing up my throat it’s a moment of fear or panic, because it’s an uncomfortable sensation and feels totally out of my control and there isn’t anything I can do to stop it, especially if the taste or texture is bad. But once that’s over, often times within a few minutes my stomach will usually start feeling a ton better!! It feels like all the pressure goes away and the tension in my belly releases and I can finally relax. Sometimes I don’t feel better after and have to repeat the process a couple times and get several waves out of my belly before I feel better. In the moments after puking, my gag reflex is really stimulated and breathing too hard, coughing, another wave of nausea, or anything like that can make me puke again immediately after. When my stomach is really upset, sometimes this is the time when I heave over and over again, only getting up small little splashes of puke each time, because my gag reflex gets so overstimulated from the first round of puking and keeps triggering itself.

Hope this answers your question!

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brightgnosis · 22 days

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My own mental health stuff is so ridiculous. Like, fundamentally, I understand how nonsense what my brain is telling me is. But it doesn't stop it from being like "Hey. Your Husband is so terrified of hurting you that he's chosen not to interact with you at all instead".

The really dumb part is that there is truth to it, which makes it difficult to convince myself otherwise. Because yeah. My Husband is afraid of hurting me! I have the "super ouchie stupid pain for no reason" disease! He's never quite sure what my pain level is! And even when my pain is good, there are a lot of spots on my body where, if you touch them incorrectly, it causes pain anyways! It's kind of reasonable to not want to hurt me!

But he's not so scared of me that he won't interact with me. The intimacy and fun is absolutely still there! He hugs and kisses me all the time. We still wrestle before bed (not in the dirty way, we're both asexual, get your brain out the gutter weirdos). We still go to the park and stuff. We still stay up for ages into the night talking about anything and everything (even if I should definitely not do that because sleep is kind of important to managing the pain of the "super ouchie stupid pain for no reason" disease). There's plenty of interaction! He hasn't emotionally or physically abandoned me!

But there are still some things he doesn't do anymore because he's never quite sure when's a good day. So he relies on me to take the lead- which I admit I'm not good at doing, and which kinda makes me feel guilty "for always dragging him around to stuff I want to do" ... Or certain things, like making breakfast in bed, were literally just not possible anymore because of legitimate health issues (thanks Gastroparesis!) so he had to stop doing them — And those are all unfortunately the things my big dumb baby brain's latched onto as "proof" he's "scared of me".

I'm just sitting here foaming at the mouth trying to get it to shut up because this is the last thing we need right now, is for me to have a(nother!) breakdown in the middle of dealing with his mom. We can't really even fix the stuff my brain's latched onto right now anyways! Like please please please please please just hold onto that thought for, like, another 2 months minimum. We can deal with that nonsense later, ok. We do not have the time right now. Especially not when I can barely get up the stairs without crumpling into an exhausted heap on the ground as it is, and now need to get checked for Reynaud's Syndrome at my next appointment with my GP, and still have to keep feeding an entire household. There is just too much going on right now. Stop.

#Personal #2024 #Alphabet Soup #Depression

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fractal-system-did · 3 months

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Running 1 carton of Kate Farms at 40mL/hr, since I haven’t run a feed in a long while. I was stressed, but now I’m sort of amused (?). Hear me out😂: Last night, after a rough day and feeling like we wanted to throw in the towel with recovery, Rhiannon (she’s a Part) gave us a tarot reading asking the Universe to “tell us what we need to hear”. And she drew 3 cards. The meanings, in short: 1)feeling empty and in need of self-care, 2) in the process of releasing myself from self-imposed restrictions and hesitation to take action that will help us progress (“Now isn’t the time to stop, or you’ll be right back where you started”), and lastly, 3) “success is a combination of education and practical application. Neither step can be avoided… believe in myself and know that we’re working towards mastery”. Those are the three meanings of the cards in that order and orientation (upright vs. reversed). After that, we got a sudden burst of motivation and acceptance, and pushed through a challenging meal, plus a shake for dessert and kombucha, over a few hours. Later into the night, I experienced some nausea, but I breathed through it and it went away. And this morning, we got ready, fueled up with a protein shake and juice, went to the mental health rec center where I challenged myself in ballet and strength training. I had a decent lunch packed and everything and I fully intended to eat it. But I just got SO nauseous all of a sudden and just couldn’t. The nausea lasted for hours. I ended up throwing up the juice and protein shake which hadn’t passed. And then again, again. Horrible. And I realized that I’m probably having a flare-up of gastroparesis and I had been taking for granted my lack of symptoms lately. I wanted to prove to myself that I don’t need the feeding tube. So I pushed myself. With consequences. I’m amused because I got that reading and still thought I could circumvent having to run feeds in order to keep avoiding carbs. And it backfired. So now, if I want to continue my wellness and fitness journey without going downhill, I NEED to run a tube feed to get enough nutrients to recover from today’s undoubtably intense workout. So that’s what I’m doing. Hey. If a cosmic slap on the wrist is what it takes to snap me out of denial, I know I felt that one. Like I literally thought I gave myself food poisoning 😭.

~Violet and Lyudmila

#actually did #actually dissociative #dissociation #dissociative system #did system #dissociative identity disorder #other specified dissociative disorder #did #@na vent #4norexi4 #ed not ed sheeran #ed vent #thinking about recovery #fitblr #fitness #gastroparesis #refeeding #nourishyourbody #nourish to flourish

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hexen-cosplay · 1 year

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Health Problems & Cosplay

I mentioned in a previous post that I am a cosplayer with health conditions, and in this post I’m going to talk about them a little bit! Now, you may have noticed that I said ‘them’, and that’s because I have collected quite a few of them over the years and here they are:

🖤 TYPE 1 DIABETES 🖤

The pancreas stops producing the hormone insulin, and as such to keep blood glucose levels from rising and causing a fatal complication known as Diabetic Ketoacidosis, T1 Diabetics must take insulin every single day to stay alive.

🖤 GASTROPARESIS 🖤

Gastro = “stomach”. Paresis = “partial paralysis”.

The basics of this disease, is that food does not pass through my stomach at the speed it should. It goes a lot slower, and this causes a multitude of often debilitating symptoms, including: intense bloating, not being able to eat enough food resulting in deficiencies and malnutrition, extreme stomach pain, constant nausea, vomiting a lot (sometimes undigested food), constipation/diarrhoea, reflux, and more.

🖤 SINUS TACHYCARDIA/POTS 🖤

Sinus tachycardia is a regular cardiac rhythm in which the heart beats faster than normal. The PoTS is suspected due to experiencing black outs (which once resulted in two broken ribs), extreme dizziness, blurred vision, chest pain, shortness of breath and changes in blood pressure.

🖤 AUTONOMIC NEUROPATHY 🖤

Autonomic neuropathy occurs when there is damage to the nerves that control automatic body functions - the things we don’t think about every day, that happen automatically. It can affect blood pressure, temperature control, digestion, bladder function and even sexual function.

🖤 PROLIFERATIVE DIABETIC RETINOPATHY & MACULAR OEDEMA 🖤

This is the last and most serious stage of Diabetic Retinopathy. In the first two stages, the changes are reversible. In stage 3 new blood vessels and scar tissue have formed on your retina, which can cause significant bleeding (you can see the bleeds in your vision, which is distressing and causes impairment), and lead to retinal detachment, where the retina pulls away from the back of the eye. At this stage, there's a very high risk of blindness.

HEALTH PROBLEMS & COSPLAY

As you may have guessed, this is a lot! It’s a lot to deal with, I’m in pain all the time, and it makes me quite grumpy sometimes too.

My ongoing health struggles did play a part in the break I took from cosplaying, but that break turned into almost 9 years. It wound up that way because I convinced myself that I had to wait until I felt better to start again so that I could wholly dedicate myself to it. That was not a good mindset for me because I was still dealing with some denial over my health, despite knowing deep down that I would never "get better" in the way that I wanted to. My conditions are chronic. They're never going away.

I've come a long way in the 8 and a bit years since my last cosplay, though, and I'm not in denial anymore about my wellness. I take my medications, and I go to check-ups; I do the things that I need to do to make my life easier and ultimately, keep me alive. I know that sounds like a bare minimum, but it's not always that easy when your head is in a gnarly space, like mine was.

Alongside the.. peronal overhaul, I've employed a lot of new strategies in my day-to-day life that allow me to be myself and do the thing that I love, because I really do love cosplaying! By pacing myself, resting when I need to and not telling myself that needing it is failing, I'm kinder to myself - this kindness in place of self-deprecation for not being fast enough or as quick as another cosplayer has been the biggest turning point. I stopped comparing myself to people that didn't have to face what I do; I took a step back and took time to come to terms with the fact that I am different, and as such, I need to look at and do things differently, to suit my lifestyle and the things I have to content with. That took a lot of courage to do, despite it being a very introspective process, because facing yourself like that is hard. In my own mind, my differences made me lesser for many years, and it took actively challenging that perception within myself to realise that I was making my life harder, and denying myself happiness and fulfilment because of it.

Nowadays, I congratulate myself on progress because I am worth praise and worth happiness; I no longer view asking for help as a weakness or a failure, and I don't compare my progress to that of others. I acknowledge and accept that my conditions and disability exist, do not make me lesser, and require alternative means of doing things. Needing these accommodations and adaptations doesn't make me less as a person, or less worthy of love, happiness, praise and fulfilment than anyone else, not only in cosplay but life in general.

#cosplay #cosplayer #disabled cosplayer #hexen cosplay #diabetes #t1d #type 1 diabetes #t1 diabetes #chronic health problems #chronic health conditions #gastroparesis

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thurisazsalail · 1 year

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Open Letter to Nutritionists + Dieticians

I'm trying to find some kind of data that seems impossible. I've had actual registered dieticians. Nutritionists are absolutely useless. My GP, one of several I've had in the past few years, is telling me to ~just diet and exercise!!!~ even when I remind her that I cannot, in fact, physically exercise without significant risk of injury, and I cannot eat most things because of celiac disorder and autoimmune issues. I’m fine when told something stupid like “diet and exercise!!!” offhand because that actually applies to most people, but when I specifically remind a doc which patient I am, and bring documentation from other doctors to show those things, they turn nasty.

I’m not fine with your stupid-ass “helpfulness” if your “helpfulness” isn’t just not helpful, but is actually actively harmful.

Every article and source I’ve come across for the past few years conflates WEIGHT gain/loss with FAT gain/loss.

These are NOT THE SAME THING.

The professional resources online are not helping. It's the same regurgitated "information" about gluten free foods being high carb, low nutrient, and how we all just think we can eat whatever we want and not "gain weight." I am literally within 5 pounds of my weight 10 years ago. It's on my medical records. I was only diagnosed w celiac in 2018, after months of NOT being able to eat. Without high fat foods like fries and peanut butter, I often cannot break 1000 calories a day. I have gone from ~4-6US size to a ~12-16, depending on brand. My first burden is to somehow sort through millions of search results that change "lose fat" to "lose weight" when in fact, I do not need to lose any weight. I need to lose fat.

THEN I need to find a way to get calories, any calories, without drinking oil and trying to stuff down vegetables that I physically cannot digest. Shockingly, by the time someone thought that maybe my lifelong issues with getting sick every time I ate something that wasn't rice or soda was maybe a Real Problem, I ended up with several other GI issues like dysphagia and early gastroparesis.

I could never eat things like broccoli without my skin breaking out into a rash. There has never been part of my life where I could eat peas. How weird that it turns out, my aversion to "health food" was my autoimmune system telling me that it's a legume allergy. I can have peanuts and nothing else.

So what do I do when it seems like every. single. article. and video. professional or otherwise... is just... a rehash of this one? It isn't just this article, by the way. I'm using this one as a short, clear example of every point I've seen defeated, not just by myself, but by dozens and dozens of followers of other nutrition and celiac-oriented education accounts on social media. https://www.todaysdietitian.com/enewsletter/enews_1013_01.shtml Some of these points are not wrong! - People do tend to better absorb nutrients and put on weight when the intestines begin healing - Not having diarrhea is a Good Thing, and probably helps someone keep on weight - Lots of GF foods right now have no impetus to be "healthy" at all.

I suspect it's because "going gluten free" has been a fad diet, so the people on a diet (who made the industry profitable) are getting nutrients elsewhere; people with celiac disease have no choice but to buy those items. Therefore, there is no financial reason to improve them. Lots are totally empty, devoid of nutrients in any meaningful amounts. I have found some nutritious products recently BUT they have used chickpeas or pea flours. Great, I can't eat those now. I lost quite a few formerly available foods to chickpeas. Cool, cool.

I wonder how many of these doctors ever look into comorbidities in their patients and think about how many of us have chronic illnesses which prevent us from mentally and physically compiling lists of groceries and cooking equipment, making each and every single meal from scratch, cooking it perfectly, cleaning up, and having energy to eat. From the sheer number of articles I've read in the past year, I'm betting on "not many."

In this article, Amy Jones, MS, RD, LD attributes weight gain to eating too much. That our portion sizes are out of control! We need to practice "mindfully eating." Just use smaller plates and don’t watch TV while we eat (yes those are actually in the article.) The fatties are just fat because we gorge on everything we see. We're like the Langoliers, but with the $12 gluten free CPK frozen pizzas at Wal-mart.

#celiac #wtf #doctors #why #nutritionists #dieticians

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keep-trying-mate · 6 years

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asking for a friend

#charlie speaks #disordered eating #recovery #like i want to do the opposite of what my ed tells me abt restricting #i.e. 'you cant eat after 7' *eats after 7*#except itll be like 'youre not hungry you just ate so dont eat'#but i cant tell if im actually not hungry or not so i keep eating #and then i end up eating several thousand calories in a span of 2 hours #and Thats a binge even by terms of a not-restrictive mindset #i cant win #or eating a non-safe/fear food turns into a huge binge of the fear food #and i panic #and usually purge #which backslides me so much #esp in regards to my physical health #bc i think my body isnt regulating electrolytes anymore #or at least not as well #bc i always feel faint even after ive eaten a hearty breakfast and drank powerade #also my gastroparesis still hasnt gone away #by any stretch of the imagination #and i still have bad heartburn ok thats mostly bc ive been forgetting to take my meds the last week or so #but still im p sure purging makes it all worse anyway

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squirrellygirlart · 4 years

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My mom is starving to death- please HELP!!!

This ISN’T a call for money!!

Alrighty tumblrites, I need you now more than ever. Your ideas, you resources, your suggestions- I’m listening.

Since March my mom has been extremely sick- every time she tries to eat, she throws up. I’m not exaggerating- EVERY TIME she takes a bite of something, she vomits. Even when she isn’t trying to eat- she vomits. 8-12 times a day, sometimes more.

Since March.

She can barely drink anything, it all tastes s bad that it makes her vomit too- yes, even ice chips.

Her primary won’t see her- of the three telecom appointments we’ve gotten with his office (not HIM), all they have done is sent her antibiotics and, after I demanded them, referrals to specialists. She has seen an Ear, Nose and Throat doctor and a Gastroenterologist- both have encouraged my mom to see a Rheumatologist, which we have gotten several referrals for, except none of the one’s accepting patients take her insurance.

Aside from whatever is causing the vomiting, they suspect she has Sjögren's syndrome, because she has also been suffering from an inability to produce either saliva or tears. I mean, her mouth is bone dry, 24/7 and it is probably the reason everything she tries to eat tastes like sand, even water.

But we can’t get into a Rheumatologist atm. On top of that, her gastro dr. did an endoscopy and colonoscopy on Aug 11 and found signs of Barrett’s esophagus, several polyps, and a twisted colon- so twisted that they couldn’t complete the colonoscopy and now have her scheduled for a virtual colonoscopy on the 20th. I know they are investigating Chronic Vomiting Syndrome and Gastroparesis... but she wasn’t able to complete a stomach emptying study because to do it she has to swallow a medicine they track and... you guessed it- she can’t swallow anything. She threw it up.

But NONE of this helps her right now- she can’t eat anything despite being constantly hungry. I rubbed her back toady as I held her hair back and could feel her ribs- I am literally watching my mom starve to death, and watching her get weaker and weaker and we don’t know what to do.

We take her to the ER, and they give her a bag of fluids and send her home. We tell her doctors she isn’t eating but all her blood tests and stuff come back normal, so they just shrug.

At this point I know what I want- I want home health coming in to support her, to monitor her condition to see what is happening. I want her hospitalized until they can determine the cause of the problem, so that if nothing else they can hook her up to a feeding tube so that I don’t lose my mom.

I don’t want my mom to die guys... I don’t want to stand by, helpless as she starves, I don’t want to wake up and find she dies in her sleep because she aspirated, or her body simply gave up. I hear people talking about being ready to die because they are miserable, and in the meantime I’m grasping at straws to try and keep the most important person in my life alive.

And she is suffering, and in constant pain, and I can’t even imagine the torture of being constantly hungry and surrounded by food that you can’t eat and I need help.

Please, please, any ideas you might have, any resources we might not have thought of... I need them. Please, if you can’t think of anything, at least reblog this post- I know it’s long as hell, but I’ve got to hope maybe there is someone on this site that might have an answer.

Help me save my mom.

#personal #starvation #illness #call for help #please reblog #not about money #just resources and ideas

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maraeffect · 3 years

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oh you know what? speaking of medical marijuana, i really need to tell you guys about how the pain management group i saw REFUSE to prescribe me pain medication unless i pass a drug test. and there are no exceptions for MMJ patients or CBD users 🙂 so even though CBD/MMJ has been one of the only things to consistently help my chronic pain, i have to give it up entirely in order to receive treatment.

apparently "there's not enough research on the long term effects of using MMJ and opioids together"? except for the increasing number of studies that prove MMJ reduces opioid usage 🤔🤔 so chronic pain patients have to give up MMJ in order to receive opioid medications....meaning they are far more likely to use MORE of the opioid medication, which are HIGHLY physically addictive, and can cause long term health issues like gastroparesis.....sounds an awful lot like propaganda from drug companies to get people to keep people dependent on opioid medications 🤔 especially given that Johnson & Johnson were recently found guilty of lying about the addictive effects of oxycontin in order to oversell the drug (oxycodone, a very common opioid drug) 🤔🤔🤔🤔

idk i could be talking completely out of my ass on that last point. but it's still just fucking cruel to force chronic pain patients to give up something that really helps them so you can provide them highly addictive substances. it just isn't right. i mean for gods sake. i've been through MORE than my fair share of awful health shit, even for an average person twice my age. it isn't my fucking fault that i have genetic conditions that affect my entire body, and pain leftover from chemotherapy i had to receive when i was 12 years old. please, doctors, just help me MANAGE MY PAIN, EFFICIENTLY. do better for disabled folks.

#sorry im just SO MAD about this whole aituation i just ughhhhhh #drug tw #cancer ment #chronic pain #ableism #disability #disabled #cpunk #cripple punk #chronic illness #medical ableism #mine

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war-torn-and-collateral-damage · 2 years

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Rough fucking night

So after a year and a half of battling severe dysphagia and Gastroparesis I finally have a doctor who knows what the eff my conditions are and how they affect the digestive tract and how to help me and order what an ENT said I needed in summer of 2020.

So my Dr. Told me last Thursday that he is ordering a Video Swallow study with speech pathology and is pushing to get it ASAP so we can get Speech Therapy Ordered and that he is Ordering my feeding tube and changing my tummy meds. GREAT!! I was told I'll get a call or a mychart message.

But I am an impatient bitch so you bet your ass I sent a message to him right away Friday and was like hey I noticed I don't have these orders and no new med at the pharmacy on top of an established med not being filled cuz I need my doc to do paperwork. But its Friday so no response. So I wait the whole weekend riddled with anxiety and Monday afternoon still nothing, so I called them and I was like yo whats up with this and they said, I shit you not. "We will send a message telling them to check your message".

So I wait. And Wait.

Meanwhile ive been vomitting so much, I struggle to even get my meds down with my dysphagia and now I cant keep them down, I cant keep down my anti nausea or my reflux meds, fluids are coming up, I legit vomitted 5 times today, (all I had was 2 bites of mac and cheese, 1/8 of a meal replacement shake and a cup of iced coffee) so my PCA while watching me spasm due to vomitting and bawling calls the nurse line and they said "call them in the morning its not an emergency we won't see her", 'call then in the morning' I FUCKING CALLED THEM 4 MORNINGS AGO!!!!! You think even if my PCA gets up and calls at the butt crack of freaking dawn on a FRIDAY anyone is gonna see me? I messaged these bitches A WEEK AGO!!!

Swear to god yall, my anxiety right now is like, im genuinely crying. I am terrified, I really think I am gonna die before doctors ever actually do their jobs and help me. I am so scared.

#actually autsitic #actually disabled #anxiety #doctors #chronic illness #dysphagia #delayed gastric emptying #GI Dismotility #gastroparesis #GI problems #feeding tube #eds #ehlers danlos syndrome #autonomic dysfunction #dysautonomia #POTS

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thewolfwaitsbelow · 3 years

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You know what my favorite thing about type 1 diabetes is?

It doesn’t matter what you do, you’re still gonna get screwed over/s

What I mean by this:

You can’t actually control it. If your body wants to do something, it will. It’s doesn’t matter how much food you eat, if your body wants to go low, it will. It doesn’t matter how much insulin you take, if your body wants to go high, you will. No matter how careful you are, you will wake up in the middle of the night low. My endo has told me that a sign of ‘well-controlled’ diabetes is going low about once a week. They told me that if I did the exact same thing everyday, my blood sugar would be completely different everyday. It doesn’t matter how much time you devote to manage your t1d, it will bite you in the ass. At the end of the day, you can do nothing.

What I also mean by this:

Your doctor will tell you that you don’t have to worry about all those awful complications if you manage your diabetes well. If you keep your a1c below 7.5, you’ll be fine. No, it doesn’t work that way. My a1c has been below 7.5 everytime since I was 12. I’ve had ‘well-controlled diabetes’ for 7 years, and I still fricking got gastroparesis. My cardiologist told me my dysautonomia is b/c of my diabetes. I’ve done everything they fricking told me to, I still can’t climb a flight of stairs without resting or eat a normal-sized meal.

It doesn’t matter what you do. You have no control over your own body.

Note: this is a vent post. Feel free to reblog, but please, keep taking care of yourself. Most people w/ ‘well-controlled diabetes’ won’t get these complications. I promise, doing your best to manage your diabetes is worth it.

#t1d #type 1 diabetes #t1d problems #vent post #I can’t sleep #this was posted at #3:56am

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my-wayward-son · 3 years

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Soooo… Um. It’s bad.

BPII is a common comorbidity with autism, and the whole diagnosis of BPII was coined (separated from BPI) because the depression end is stronger and the manic end is more like super anxiety. I know this. I’ve known this for a long time.

I have chronic migraine disease and severe gastroparesis/adult FTT. I know this too.

My labs still haven’t recovered completely from the colectomy and subsequent stint on TPN; my H&H is chronically low and my ferritin is shit. Fatigue is is a problem. Like, majorly.

It never fails to catch me off guard, though, when things really take a turn for the worse, especially all at the same time. Lack of interest in things I usually enjoy keeps washing over me. Like, all the time.

Let me explain.

I haven’t seen the new Spider-Man trailer. I haven’t seen What If. I haven’t seen Shang Chi (though that’s also due to fear of the delta variant and crowded theaters). I need 4 (count that, 4) doses of sleep med to put me down for the night, and I still roll all over the bed and listen to Buzzfeed Unsolved I’ve already seen and get barely any REM. All I want to do is ballet, then I get frustrated that I can’t remember combinations easily, but that’s because of the (faulty) migraine and psych meds I’m currently on. I’ve been having sick stomach a la pre-colectomy if I take in anything but clear liquids by mouth. I haven’t combed my hair or put in my hearing aids in about a week.

The list goes on, but I don’t want to bore you. Or sound too complainey. I feel pathetic and like I’m being an attention whore by putting it all out there, but, as DD has told me, at least I have words. A couple of weeks ago I felt so low that I could barely express what was wrong. Now I’ve been to a couple doctors appointments, switched a few meds, and have enough presence of mind to know that everything is seriously fucked up.

The SSRI I’m on is absolutely not agreeing with me, and my sleep med is obviously not doing its job. My psychiatrist is working on coming up with a new med cocktail, though we’ve only been able to talk via email so far.

I’ve pretty much eschewed my migraine steroid pack because it’s keeping me from being able to think, but the headache is… impressive. If my mental health/drive were in order, maybe I’d call the pain functional, but right now it’s edging back up toward status. I take pain meds ranging from ibuprofen to RX injectables at random intervals when I feel especially bad. Intensity ranges from dull throb to skull-splitting, going to vomit.

I know most meds have headaches as a side effect, which sucks fucking rocks because that makes it impossible to tell how much I actually hurt and what’s amplified by my new meds. Not all of them are bad (we think), so it’s kind of a waiting game to see if my body “gets used” to the formulation.

I have neurology in two days, so I guess we’ll be able to discuss the headaches then, however it’ll be hard to ensure any med changes are appropriate when my psychiatrist is still working on a new batch for mood stabilization. I’m nervous and frustrated in advance.

There are so many things I want/need to do, like catching up on short fics in my inbox and doing this month’s Artsnacks challenge. I’m basically living day-to-day right now, and I’m lucky if I get all my daily household and self-care tasks done. I keep wanting to do fun activities with the kids, too, but time gets away from me. It winds up taking 10 years to fold the laundry, and all the sudden it’s time to get ready for bed, and I did nothing all day.

I hope to all gods above and below that everything will be worked out before Inktober/Whumptober, because I really want to commit to completion for both. We’re going on vacation for the first week of October, and I plan to focus my non-beach time on art and writing work. I’m all planned out (was able to do that before the depression hit so badly), but I’m currently doubting my abilities. I also plan to slide back into working on Keeping Safe, so I can take it back on for NaNo. That’s something that will take some commitment and discipline. I want so badly for it to work out. I’ll be disappointed if it doesn’t, and I know it’ll be a hit to my self-confidence. A few years ago I wrote a whole 70k book in just 28 days, and now I’m struggling to pop out shorts…

Anyway. I’ll stop talking now. I hope this doesn’t read as overly dramatic or like I’m begging for sympathy. I’m not. I’m trying to be real and maybe explain why my presence has been spotty lately. All I want is for things to get better.

#life update #mental health tw #mental health #tubie

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neednothavehappenedtobetrue · 3 years

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more parent emotions under the cut, they will not make sense if you have not read the previous two posts, one of which offers some context. also, they are For Me so I can get them out of my brain so I can get some additional sleep.

I could not listen to a person scream in pain and ask me to take them to the ER for fifteen minutes, let alone multiple hours, even if I personally did not want to go to the ER until morning.

I could not do that to anybody! I could not do that to Zoe or any of my friends! I could not do that to any of my little cousins! I could not do that to my parents!

I do not know what it is like to have children, really, but people do talk about, like, all these visceral protective feelings.

also, when we did get to the ER they saw me within fifteen minutes! I don't know if they would have been able to three hours previously, but I would not have screamed in the ER for three hours! I would have gotten help sooner! they did that! they fucked that up!

the ER sucks! my personal feelings about how much it sucks should not impact anyone's medical care!

the way I scream when I am in gastroparesis pain scares people. it's frightening. I have seen other people who were also waiting in the ER for their own problems and also were strangers who did not know me go "maybe you should take her back? she sounds like she's having a bad time."

apparently it does not scare my parents like that, this horrible involuntary agony screaming! I feel like perhaps it should!

when I was a kid, my mom's justification for making me experience self-harm triggers after my therapist specifically told her to stop was that I was going to prom, and needed to shave my legs for prom, obviously. this is stupid on its face for many reasons, but also, I was wearing a floor-length dress. my legs were not even visible! zero people could tell whether I was doing Gender Beauty Standards correctly!

I remember being glad that they left me alone in the house for two hours basically right after they picked me up from a 72-hour psych hold after my overdose. I was like "oh, good, they trust me." now I am so mad about it that I could spit out my own teeth. there was still half a bottle of Valium in the goddamn house! I could have found it, if I looked, to say nothing of sharps/substances.

I want to go back in time and be my sixteen-year-old self's lawyer. I want to acquire a time machine and a skirt suit. I want to make them justify their goddamn feelings.

"you needed to save the Valium for an emergency? please identify an emergency that is worse than "your child tries to kill herself a second time." please identify an emergency that can be in any way mitigated by twenty Valium and is worse than your child having to be hospitalized again."

"your neck hurting is not an emergency. when she has muscle spasms, you tell her to take Tylenol"

"identify an emergency that is worse than "your child never trusting you again." identify an emergency that is worse than "your child crying at night fifteen years from now because you have hurt her so much."

"that's not rational? please tell me how it is rational to prioritize "saving old medication in case you get a muscle cramp" over "keeping your child out of the hospital" and "having a child who trusts you."

I would be a bad lawyer. I would like to acquire a time machine and a good lawyer, who probably already owns a suit.

#alex's parents #child neglect for ts #suicide for ts #self harm for ts #medical neglect for ts #just fucking garbage bullshit

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ankoku-jin · 3 years

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what’s up guys I should be sleeping but no

My stomach is so ultra mega fucked that I may have to go on a soft/liquid diet for a few days to see if it sorts itself out, and if that fails then it’s time to fast for 16-18 hours a day on top of that, and let me tell you that makes it hard to keep your skeleton from trying to hatch

The alternative is being up all night with nausea like tonight :c

Gastroparesis sucks fat hairy nuts, I don’t know why it’s come back but maybe my thyroid is hecking up again, because the night palps are back too. Gonna try upping my meds and see if that helps, but ugggghhhhhhhhh I hate it

#chronic illness tag #disordered eating cw #weight loss cw #untangling why I feel bad at any given moment can be a real challenge

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