Crohns Crusader

Hi my name is Lyric. I'm 22 years old and have crohns.This is a side blog about my fight to keep my Crohns under control. I'm on a concoction of pills including weekly humira shots. I'm trying out the SCD diet to try and help control my symptoms.   I'm open to making friends and answering questions. Message me if you want to.

[sexioto]

[crilbyte-deactivated20240607]

Oh shit. No. Shit. Thank you

[villianext-deactivated20190407]

Just gonna reblog this out of gratitude because I actually did forget…

[novacaineandabelle]

Fffffffff let me get right on that. 

and then reblog for the next forgetful son of a bitch

[blondiez-b-deactivated20171118]

I’m so great full for everyone that is reblogging this. I totally forgot to take mine

[optimysticals]

I think that there is some sort of unspoken fairy godparent thing where you see this, realize that you forgot your meds, and rebagel it because if you forgot someone else must have. And in our turn we all take care of each other, even if we don’t know it.

[edentulous-one-blog]

These photos were taken around one year apart.  One year.

Can you imagine living your life without teeth?

https://www.gofundme.com/toothless-and-desperate

Have a brief example of what you’d experience:

- Unable to eat properly, your health and physical well-being suffers significantly and this shortens your life over time.  If you’re like me and have weak jaws, you’ll likely not be able to chew well; you’re going to be swallowing lumps of things, which is uncomfortable, gross, and unhealthy.

-Eating can be very painful, to the point you’re going to be eating soup, mashed potatoes, or cream of wheat for at least a few meals.

-Self-confidence tanks, and so can your mental health; this has really f*cked me up, leaving me intensely depressed to the point where I’ve pretty much cried for entire days, not to mention trying to adjust to this nightmare that has become my life.

- Dentures generally need to be pasted into your mouth (the paste doesn’t usually last that well, and isn’t a fix-all.  It also tastes pretty foul.) and tend to cause anything from mild discomfort to bad pain.

- You don’t get to eat anything sticky, chewy, etc.; no more toffee, gum, unprocessed meat, salad (yes, even things like lettuce and spinach are VERY difficult to eat.  And, forget fresh fruit and veggies.  Too firm,

- No biting with your front teeth.  

- There is no real ‘resting place’ for your lower jaw - it’s uncomfortable and even painful to have your gums pressed together, and letting your lower jaw relax and ‘hang’ is almost as bad.

- Have you heard someone speak without teeth?  You’re liable to repeat things A LOT and feel self-conscious and stupid.

-People will shun you, or give you repulsed looks.

-Try looking for work when you look like I do, all gums and no teeth.  No way you’re getting an interview or a call back.

https://www.gofundme.com/toothless-and-desperate

Not to mention that your JAWS SHRINK and make it even more difficult to eat/speak and are prone to FRACTURING.

That’s why I am on my knees, begging and praying for the donations I so desperately need to replace my teeth with implants.

Implants act like REAL TEETH and I could eat/speak as before and my jaws would stop shrinking.  But, I live in poverty and am disabled.  I can’t afford it alone.  I’m scared this is going to be the end of me.

https://www.gofundme.com/toothless-and-desperate

[tariqah]

HELP THEM!!

[glowbot]

posts about ADHD have no business being 2k words some of us are unmedicated

[just-call-me-ella]

I was talking to my mom the other day, and she said she was going to start going to the gym, because its important care for your body. I’m disabled w/ multiple chronic illnesses, so going to the gym is impossible for me. She seemed to realize this, and started to backtrack, saying like - its part of taking care of herself, and I interrupted and said, “Its okay mom. You and I taking care of ourselves look very different”. And thats what I would like you to know.

Taking care of yourself looks different. 

For some people, taking care of themselves looks like fruit smoothies and gym visits, cutting out sugar and weight training.

For some people, taking care of themselves looks like hospital visits, feeding tubes and ports. Needles and tests.

For some people, taking care of themselves looks like taking medication and lying down in a cool dark room.

For some people, taking care of themselves looks like getting any calories in their body that they can.

For some people, taking care of themselves looks like adding in more vegetables and trying to go outside to get sun more often.

For some people, taking care of themselves looks like seeing a therapist, keeping symptom journals, and practicing mindfulness, meds, or grounding techniques. 

We all have different needs. Please don’t feel bad about how you care for yourself just because someone else is able to do “more”, or their care is more performative or obvious. Please don’t look down on someone for caring for themselves in a way that you do not. Medication and rest are just as important as exercise and vegetables.

Keep doing your best to care for yourself, the best way you know how. Your self care and health is important, no matter what it looks like. 

[staystrongspoonie]

So important !!

[bluehairedspidey]

me being generally bad at existing: why am i like this

me later reading about a disorder that i literally Have: aw fuck thats right i got symptoms syndrome

[positivepatton]

no offense but your struggle is valid no matter how many people have it worse than you

[acaemia]

!!!! YES !!!!

[spoonie-humour]

Most people: oh I see my doctor every 6 months, don’t really know much about them!

Me: hey Alex what’s up it’s me again! How’s the kids? Boy do I have some HORRIFYING symptoms to fill u in on

[spooniestrong]

You can file an Americans with Disabilities Act (ADA) complaint alleging disability discrimination against a State or local government or a public accommodation (private business including, for example, a restaurant, doctor's office, retail store, hotel, etc.). A complaint can be filed online using the link below, by mail, or by facsimile.

The ADA Home Page provides access to Americans with Disabilities Act (ADA) regulations for businesses and State and local governments, techn

[spooniestrong]

I think Michigan might be the only outspoken state about this.

[luchia13]

hey guys psa regarding hospital bills

don’t just pay it. do not automatically pay the hospital bill when you receive it. call your health insurance provider and POLITELY say, “excuse me, i just received a bill for $1200 for my hospital visit/ER visit/etc., is that the correct amount i’m supposed to pay?” because hospitals bill you before your health insurance and they will take your money no matter how the amount due may change based on your health insurance looking at it. 90% of the time, if your health insurance is in any way involved in the payment of that bill, you do not have to pay as much as the hospital is billing you for. call your health insurance provider first, and POLITELY request clarification, always remember that the person you are talking to is human and this is just their job, and then you will very likely find out you actually only owe $500.

don’t shout at anyone about it, don’t get mad, just understand that this is The Way Things Are right now and call your health insurance provider before paying the bill your hospital just sent you. there’s a chance the hospital bill might be correct, true, but call your health insurance provider.

[smallercomfort]

THIS IS SUPER IMPORTANT. after my car accident last year the hospital billed me ~$8000. They sent me letters asking me to pay, and I called them back saying my insurance was processing the claim. This is also what I told the collection agency when they kept calling me about the $1000 emergency room fee (billed separately from the hospital fee, mind you). Once everything got straightened out, all I was actually liable for was my $200 emergency copay.

[thevelvetdevil]

!!!!!!! things my ass didn’t know !!!!!!!!

[anamatics]

Yes this is a life lesson my adulting ass didn’t know I needed and I’m out 80 bucks for an anti-nausea pill. 😒😒😒😒😒

[elodieunderglass]

Reblogging for American friends.

Also, it is important [for people receiving medical care in the USA] to carefully read all of the items on the medical bill and look for errors and overcharges. I know that the normal feelings of avoidance and dread can make it hard to look at scary hospital bills, and that’s okay! But as the OP mentions, private orgs like hospitals don’t monitor overpayment of bills - they are motivated to charge you extra - and it is basically impossible to get your money back. Read the bill carefully and make sure that the charges are correct, using the links below for help if you need. If they haven’t sent you an itemized list, you can ask for one. Sometimes you will be charged extra for items or treatment you didn’t receive. Most people don’t know that you can dispute medical bills! But in 2009, Consumer Reports stated that 8 out of 10 medical bills scrutinized by a watchdog had errors, and generally you are not obligated to pay for someone else’s error.

You may be charged for using medication that you actually brought into the hospital with you - that’s easy to dispute! You may be charged for the consumables used during your stay such as sheets, gloves, gowns, etc - the hospital should actually cover that under its running budget. You may be charged for a brand name drug if the generic was available for cheaper - the links below explain how and when you can dispute this. You may be charged a surprisingly expensive “oral administration fee” (where a nurse puts pills for you to take in a little clean paper cup and then hands it to you) but that’s worth disputing if you were actually able to take the pill out of a bottle and put it in your own mouth. And so on.

8 Things You Should Know About Challenging a Medical Bill (FORBES) (includes links to sites that help you calculate how much a procedure/treatment usually costs in your area, if the costs seem super high)

7 Tips for Fighting and Paying A Huge Medical Bill (FORBES) This explains briefly how to negotiate costs, and payment plans.

10 Common Medical Billing Overcharges You Can Prevent (Bill Advocates) A breakdown of errors and overcharges to double check.

Check medical bills for errors: Overcharges are fairly common, and correcting them can save you thousands of dollars (Consumer Reports) More of the same with links to some groups.

[mindingmyownbrain]

Don’t wait for a diagnosis to accommodate someone

Everyone finds things difficult or confusing sometimes.

A specific diagnosis can help explain why someone finds certain things difficult or confusing more often than other people do, but you do not have to wait for a diagnosis before making reasonable adjustments for someone.

Many people, such as women with autism or ADHD, do not receive a diagnosis until later in life. Some never will get a diagnosis even if they qualify for one, and will never be aware that their differences have a name. This is also similar for people with physical disabilities. It may take years or even decades to diagnose someone correctly, if at all. 

This means that people without diagnoses may struggle greatly with a lot of things - or something very specific - but don’t have the validation or clarity that medical recognition can give. They may not even realise what it is they struggle with exactly, but instead live with an overwhelming sense of stress and low self-esteem. 

The majority of disabilities are invisible with the result that people on the outside can’t see the suffering within, and those who are suffering may berate themselves for not finding things as easy as everybody else. Invisible means that those with a disorder can’t always see it themselves. 

It is also important to remember that because of the stigma associated with being disabled or different, not everyone will want to disclose their diagnosis to you if they have one.

Some people will not want to explain their diagnosis (it might feel too emotional or too risky) and will instead choose to tell you about the specific adaptations they need. It is important to remain open to such requests rather than implicitly or explicitly pressuring them to give up their right to privacy by disclosing their diagnosis.  

Knowing someone’s diagnosis doesn’t always help you realise what practical things you can do to help anyway, especially if it is a diagnosis that comes with a lot of stereotypes attached to it. 

“You’re autistic? You don’t seem autistic. You must be high functioning. I’m sure you’ll be fine.”

“You have chronic fatigue syndrome? I get tired too. You don’t look ill so I’m sure you can keep up.”

“You have ADHD? Is that even real? You just need to try harder.”

If someone tells you they need certain accommodations, they don’t need to give you a diagnosis in order to justify them. They may have a diagnosis, or they may not. Most of the time doesn’t matter. 

The habit of inclusion benefits everybody.

Adaptations are not “special needs”. 

The idea of “special needs” only serves to marglinalise people and stigmatise differences. People are generally not trying to be difficult or manipulative when they ask for help. The need for access or to have information presented to us in a way we can process without stress is a reasonable need, not a special one. There is no need to be suspicious or cynical about people who assert normal human needs.

Moreover, the idea that we should withhold adaptations unless there is an approved medical reason to give them plays into the myth of “it’s an excuse”. 

People without a diagnosis (or who chose to keep their diagnoses private) are asked, “What’s your excuse?” 

People who are considering a diagnosis are asked, “Are you sure you’re not making excuses?”

Most cynically, people who already have a diagnosis are still often told, “That’s not an excuse.”

The word diagnosis comes from di meaning to divide or distinguish, and gnosis meaning to know. A diagnosis, therefore, is something that distinguishes a person or a condition from other people or other conditions and the recognition of this fact. We don’t need to wait for a medical diagnosis to know that everyone is unique and that some people need to do things differently from other people.

Gnosis also implants itself into the words recognise and acknowledge. 

We can recognise and acknowledge the validity of people’s challenges without waiting for medical approval.

Withholding adaptations or validation from someone until they receive a diagnosis risks you being that other word that gnosis lends itself to - ignorant. 

[cockroach-queer]

Some things it is A-OK to say to your doctor:

No

Wait

Stop 

(These are full sentences! You do not need to say any more) 

I am not comfortable. 

I am not comfortable, I would like… 

you to wait a moment.

another person in the room. 

everyone else out of the room. 

a doctor/nurse of my same gender to preform this test/procedure. 

the person who came with me to this appointment in the room. 

you to explain everything before you begin. 

you to tell me what you are doing as you go. 

to do this another day. 

I want to get a second opinion before we proceed.

I don’t understand, please repeat that. 

I don’t understand, please explain more simply. 

Please say that slower/spell that, I want to do some research myself.

I would like to talk to [someone in my life, ie my parents to SO] before making this decision. 

No, I do not need to talk to [anyone] before making this decision, I am confidant on my own and am ready to proceed. 

What are the side effects of this medication/procedure? What are the potential complications? 

Why are you recommending/prescribing this specific thing? 

What other treatment options are there? Why are you choosing this?

Would your treatment plan be different if I were a man/woman older/younger had kids, etc? Why are you choosing this one then?

IS there anything I should know about this treatment you have not yet told me?  

I understand you say not to, but If I choose to do X, against medical advice, what risks am I running? (ie taking recreational drugs while on medication)

How much will this cost? 

Are there any less expensive options/tests we can run first? 

Is there a generic of this medication you can prescribe instead?

I think you are not understanding me, I said…

You are not listening to me, please let me finish describing my symptoms. 

You are not understanding how much pain I am in, let me clarify… 

I do not think it is anxiety/depression/my weight/etc, what else could it potentially be? 

I think by assuming it is anxiety/depression/my weight/etc you are ignoring some symptoms. Please listen again and let’s discuss what else it could be. 

Please write in my chart that you are not testing for X and why not. 

I am in enough pain/this is detrimental enough to my life that non-treatment is not an option. If you can not treat this/figure out what is wrong, to whom can you refer me?

Please write (or help me write) a summary of what we did today so I don’t forget 

What are our next steps? 

If [what you are recommending] is ineffective, what would my next steps be? What other doctor should I talk to? 

What is the best way to contact you if I have additional questions or issues? 

Remember, a doctor is a person YOU pay because they know a lot about bodies in general, to help you figure out whats best for YOUR body. It is still your body, not theirs! They know about medicine but you are the expert in your body. Don’t let them act like they own you. Don’t leave if you’ve still got questions, don’t stay if you’re uncomfortable, and feel free to insist on ANY information you want. 

[that-catholic-shinobi]

ask questions, advocate for yourself. Be aware!!

[doctorkintsugi]

Good list!

[cranquis]

“Remember, a doctor is a person YOU pay because they [paid a lot to] know a lot about bodies in general, to help you figure out whats best for YOUR body.”

Just felt it wouldn’t hurt to point out that doctors aren’t inherently geniuses – it costs blood, sweat, money, time and tears to learn medicine (which is probably why some doctors end up behaving like they DO own your body? not cool). 

great self-advocacy post, that list is golden!

[everylittlethingtheydoispainful]

I've always felt I had it a little easier than most spoonies in our community: I've had relatively high spoons and relatively low pain. I can usually get around without a mobility and, at least short distance. But more and more, it seems I'm losing it. I'm gradually dipping deeper into the chronic illness, disability world, and my healthy self from 5+ years ago is disappearing from view. I'm in more pain every day. I can hardly get around. I'm going off to college in a month and it's looking really unlikely that I'll be able to manage. I am in so much pain. I can barely hold my phone. I'm no longer functioning.

[phxfallen]

Relatable content right here.

Get yourself some better mobility aids if you possibly can. Like, wheelchairs or whatever. Think about what you’re most scared of, and if that fear is stopping you from trying to get that thing. Don’t let fear trap you and isolate you.

And, re: the phone thing, i can hardly hold my phone too, something about the shape of it. I’ve found the Apple Watch cuts the amount of times i need to touch the phone about in half, which has helped a lot. There’s something especially dehumanising about picking up a phone to check a notification only to realise, in pain, that it was for some unimportant bullshit and wasn’t worth the pain at all. Smart watches fix that problem really well, and stuff like heart rate tracking can be useful for some medical stuff like POTS or whatever.

Don’t let this thing keep you from going to college. Don’t let this thing make you sad. Get angry instead. Being sad and isolated sucks so much worse. Isolation gets traumatic pretty quick. Isolation messes people up bad

[bee-fox]

This was pretty much me last year and let me give you a tip: don't stop yourself from using mobility aids, from asking for assistance from school, etc etc. I stopped myself and it meant I was hurt more and more by my own stupidity. It is okay to be disabled, it is okay to use assistive devices, it is okay to ask people for help. In fact: if you feel like it could help you even a tiny bit, do it

[cripdeaf]

I spent a long time fighting because “I don’t need those!!!” wrt mobility aids and whatnot; do what you can to work through that because it’s more than okay to need and want things, whether they’re small things or big things.

Might not be helpful for everyone, but getting a Popsocket helped me a heap with holding my phone; I have limited hand mobility and hypertonia, and really struggle to open my hand enough to hold and use my phone, especially adding joint instability into the mix. I don’t use my Apple Watch for same things as my phone (the watch I use to track heart rate, wheelchair pushing, falls / seizures, checking time, etc., whereas I use my phone for social stuff), though it’s still an amazing tool.

[everylittlethingtheydoispainful]

love y’all so much and honestly this community always returns my every post with caring and thoughtfulness. I didn’t even have to ask for help and you came in full and I just think that’s neat.

[ceavit]

[a-talking-anal-cucumber-deactiv]

Extrovert vs. Introvert There is this common misconception about the natural behaviour of extroverts and introverts; extroverts are often times characterized as being lively and talkative, while introverts are naturally quiet and withdrawn.

This isn’t true. It’s correct that when you meet someone shy and quiet they will more likely be and introvert than an extrovert; however, this doesn’t mean that introverts are naturally shy, or that shy people always have to be introverts. On the contrary, introverts can be very talkative and discuss for hours on end about topics that interest them.

The actual definition of an Introvert is someone who draws energy from being alone with their thoughts, while Extroverts draw their energy from being with others.

Introverts are people can who draw energy from being alone with their thoughts. They enjoy, and sometimes even need, a deep conversation with people they trust; they don’t like small talk, or rather often don’t see the point in it. But after a while they will feel the need to be alone again, to recharge and sort out things on their own.

Extroverts on the other hand, are people who draw their energy from being with others. They can enjoy being alone with their ideas and dreams just as an introverts can enjoy being around people, yet after a while they will feel the need to interact with others to fill up their energy.

[psychology-studyofthesoul-blog]

CORRECT.

[heyatleastitsnotcancer]

Why do you think people are so rude to you and other people who have disabilities?

Society has a tendency to dehumanize disabled people which makes it a lot easier to treat someone badly. A lot of disabled life is segregated from abled life. There aren’t as many disabled people in the workforce due to barriers. Employers don’t want to hire disabled people even with tax incentives to do so. They don’t want to make basic accommodations to allow disabled people to work because it’s inconvenient to them. And many of the companies who do actually legally pay disabled people less than minimum wage (to point some can pay less than $1 usd an hour to disabled workers). The unemployment rate for disabled people is more than double that of abled people. So that’s a big barrier.

Then add the inability for disabled people to successfully navigate society due to lack of accommodation and accessibility. Yes accessibility is a law in the US but there are so many ways to get around it. Disabled people are barred from public places because of easily fixable things like the width of isles in grocery stores or one step to enter a building.

You add those elements together with the way media and society in general portrays disabled people and it’s the perfect mix for dehumanization. Disabled people are usually portrayed one of two ways. First, they are the villian due to their disability (for instance the new movie detective Pikachu) or they are seen as a pitiful inspiration to make abled people feel better (see the recentish movie me before you). Abled people use disabled people as inspiration porn to make themselves feel better about their lives. You see posters and memes with a disabled person on them saying “the only disability is a bad attitude” and “what’s your excuse?” This is dehumanizing to disabled people and it also promotes the ableist idea that disability isn’t…well disabling. That a disabled person can do anything an abled person does if they just try hard enough. This becomes dangerous for disabled people because then we face pressure to preform at the same level as an abled person without accommodation and also to be inspiring to the abled people around us to make them feel better.

Finally, once again further dehumanizing disabled people, is the idea of policing disability. That abled “good Samaritans” have the right to decide who should have access to disability services. You see this with people yelling at disabled people with invisible disabilities for using disabled parking spaces or receiving government benefits. The whole idea of people “gaming the system” is so prevalent in our society that abled people feel they have the right to any disabled person’s personal medical information. In reality, the cost and percentage of people abusing the system is minute. The amount of times people have come up to me and asked “what’s wrong with you?” “what did you do to yourself?” “why are you using that handicapped space” over the years is astounding. I can’t make it through an errand without being stopped and questioned these days. We lose the basic human right to privacy about our own lives because of the good Samaritan concept.

You put all of these things together and it becomes very easy to dehumanize and target an already marginalized at risk group. To blame us for our disability while simultaneously accusing us of faking or exaggerating it.

The best way to remedy this attitude is with awareness and acceptance. We need more visibility as disabled people. More disabled people in the media. More accurate representation of disabled lives in the media. More education for abled people on how to treat disability (spoiler: treat us like everyone else while respecting our needs). We just need abled society to understand that we are people trying to live a happy life just like them. It’s an uphill battle and I really hope we get there some day.

[sunflower-cane]

If you have chronic pain and just randomly has emotional outbursts and rage episodes and severe drastic mood swings, anxiety and depression, i want you to know that that is normal, youre not making it up, youre not overreacting, youre in pain and sometimes you might get so used to it that it stops bothering you but your brain hasnt and sometimes without even knowing it the pain could make you emotionally vulnerable, sensitive, angry, and depressed out of nowhere.

Being in a constant battle with youe body can do damage that you migh not even notice until you realize that its not normal for someone to be in this much pain, and your brain and body know that even when youve become adjusted.

You will be okay, you are nor overreacting. You are not making this up. I believe you and i believe in you.

[littlealienproducts]

Not All Disabilities are Visible by Doodlebethshop