#chronic pain advocate

[aritany]

"do it scared" is all well and good but may i also put forth "do it exhausted" and "do it hurting"

where are my chronic pain baddies

[mandiweirdmore]

Guess who cried seeing this in target 😭 I swear all my posts are about me crying. This one was a good cry though! It’s such good representation childhood me was freaking out. I kind of want to buy in the future and paint it to look like my service dog 🥹

[multifariousmayhem]

me chronically fatigued and in pain: today i will rest!

me after being forced to do chores and with no energy left: ouch

[study-diaries]

Reminder!

Your worth is NOT defined by:

Grades

Appearance

Weight

Height

Nationality

Gender

Race

Religion

Work

Degree

Illness

Disability (mental/physical)

Income

Your worth is not defined by anything. You are definitely worth it. You are enough. Don't let anyone tell you otherwise.

[chroniclesofchronicillness]

We have no choice really

[tuptastic]

Disability, especially with a rare condition, is so difficult in so many small ways.

It's the stares you get when you walk around and they see your gait, unusual and unstable and a clear sign something is wrong.

It's being ignored in favor of your companions because the person in a wheelchair obviously can't speak for themselves, right?

It's being followed in stores because of your service animal, and being photographed and touched without your consent and having medical episodes expanded on because strangers approach you when you're down to ask questions and refuse to allow her to work.

It's having to plan trips carefully because you know there are areas you can't access and things you can't do anymore, and seeing your friends faces flicker with emotions you can't describe even though they try so hard for you.

It's having to work twice as hard as your classmates to achieve the same results, because you physically can't handle the same effort they put in.

It's seeing the shocked looks when you remind people that accessibility is done to the bare minimum, and that there are places I can't access because it's deemed a financial burden to change.

It's knowing the look on a doctors face when they have once again found no answers, and when you're going home again with nothing despite everyone telling you something is wrong. And that's at best - at worst, you go through another period of mistreatment and neglect, or you end up back on a treatment that almost kills you.

It's never having a community because there is no one else out there like you. You can get close, but you will never find your people.

It's painful. It's terrifying. And it's so hard.

[laneaconite]

Treatment

“Take this pill,” They say.

Take this pill and it should work

 In a month,

                    Three months,

                                            Six.

Take this pill,

And it will make you tired.

                                        They all make you tired,

Because they act on the brain, 

                                                  You see.

Take this pill,

“We’re sorry the others didn’t work.”

We will smile

                    Sympathetically.

                                                 We do care.

Take this

            Pill.

                  It will make you dizzy.

Take this

            Injection.

                           Since it is treatment resistant

Now.

It will hurt,

                 It will make you itch.

You can still keep taking the old ones,

                                                         In case they end up working

                                                                                                          Too.

Take this pill,

                      It should work in one month,

                                                                    Three months,

Six.

No, we don’t know

                               Why this is happening.

We don’t know

                     How to fix it.

Your blood screening was

                                           Normal.

Your CT scan was

                                Normal.

Take this pill.

-Lane Aconite,

March 5th, 2023

[windysjourney]

Guilt & Chronic Illness

Something I’ve noticed as I navigate living with chronic illness and connecting with others who are on the same path, nobody really speaks about the guilt that comes with chronic illness. I know in my own life I certainly have felt guilty for being sick and not being able to do the things I used to be able to do with and for myself and my family. My chronic illness is debilitating, which means…

[poeticnotpretentious]

There is nothing brave about suffering through something I didn’t choose to deal with.

[farewelln3verland]

TUMBLR RARE DISEASE/DISABLED/CHRONICALLY ILL PEEPS! (or people who advocate)

If you're between 16-26 theres a YA legislative national group!! IF THIS INTERESTS YOU MESSAGE ME WE NEED MORE PEOPLE...but it's a legit thing lol there are 75? of us

[meadowsystem]

💙 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.

💙

[autisticlee]

having some sort of chronic pain and tiredness issue and joint problems and whatnot but not knowing exactly what the problem is is really good at leading you feeling like you're faking it or making a big deal out of nothing or making it up. especially if there's a good day where it's not as bad and you can walk straight without limping for the first time in a year. but then you can wake up the next day and can barely walk and wonder why you can't just walk normal. it's hard to not guilt trip yourself into dealing with pain by trying to ignore it and force yourself to walk "normal" all the time

[orbitalsockets]

Ten Things I Wish Someone Would Have Told Me Sooner About Reproductive Health As A Person With PCOS and Endometriosis

Periods should not hurt. You read that right - I was shocked beyond belief when my doctor told me for the first time. Periods are, for normal people, uncomfortable and slightly unpleasant. However, normal period pain is often treatable with Tylenol, Ibuprofen or Midol. If your period is causing you pain to the point that none of these things help or it debilitates your ability to do everyday tasks, THAT IS NOT NORMAL. I believed from the age of 11 (I'm 23 now) that periods were just a horrible, painful, nauseating experience for everyone and many male doctors AGREED with me. It wasn't until I met my current gynecologist that I was informed that having to miss school, wear two pads to bed and cramping so hard that I threw up were all NOT normal period experiences. This ended up being my most ignored symptom, and it took twelve years to find out that - for me - it's a combination of PCOS and Endometriosis.

Penetrarion also shouldn't hurt. Since the first time I had sex, I have had pain with penetration. Even situations like a standard gynecological visit with tons of lubricant or using tampons often leave me crampy, in pain and sometimes bleeding. This is not normal, and for me was an indicator of endometriosis that went unnoticed for four years.

Your period skipping for several months at a time is not normal. When you first start your period it can be normal to experience some abnormality with your cycle timing, but it shouldn't be a chronic issue. If you find yourself missing your period more than having it and you're not on any medication that can impact it, THAT IS NOT NORMAL. This for me wound up being a symptom of severe PCOS that went unnoticed for six years.

If you are plus size, you have to advocate twice as hard for half the result when it comes to reproductive disorders. I am plus size and a large reason why I was dismissed by doctors was because of my size. Never mind the fact that my blood work indicated nothing about my weight being a factor and rather leaned into showing that my weight was a direct result of my PCOS - doctors saw fat and immediately assumed that my fatness was the problem instead of an underlying syndrome. This is one of the most gut wrenching parts of advocating for yourself, but you HAVE to keep fighting for an answer if you know something is wrong. Getting discouraged can be the path to chronic pain and worsening disorders.

Don't trust what hospitals have to say about your symptoms - If possible, go to a specialist as fast as possible. I spent months in and out of the hospital because the pain I was experiencing felt emergent (talking like an 11 on a scale of 1-10) and I was repeatedly told I was fine. I had over 20 ultrasounds in this hospital, and they claimed they didn't even see my PCOS that had been diagnosed years prior. They made me feel crazy, passive aggressively accused me of seeking out pain meds, and called me names outside of my door - It took my doctor ONE ultrasound to reconfirm that I indeed have severe PCOS. If the hospital tells you that you're fine, or even a doctor who you don't feel is taking you seriously, get a second/third/fourth/etc opinion until someone listens and checks.

If you and a doctor find that you're showing symptoms and need to move towards surgery, it's really easy to lose yourself in the limbo of finding out if something is there or not. I spent the last year in debilitating pain and for most of it didn't even know the cause - I just had my first endo surgery, and I spent the entire lead up wondering if I actually was crazy. I drowned in my own head with worry that I was actually faking it like so many people claimed. I woke up in the post op recovery room to news that I had been right, and I have endometriosis. Trust your instincts, no matter how deep the gaslighting around you tries to seep into your brain. You know your body better than anyone else.

If you have POTS or any other disorder that impacts your temperature regulation, be VERY careful if you decide to take Orilissa for endometriosis. The medication essentially puts you into medically induced menopause, which causes heat flashes. I have POTS and the heat flashes were too severe and disorienting for me to be able to continue the medication, which is why we moved onto surgery.

If you're diagnosed with insulin resistant PCOS and are given Metformin, you will most likely be asked by every medical professional you meet if you're diabetic, regardless of specifically stating that you take it for insulin resistant PCOS. This will happen even more frequently if you're plus size - it's annoying as fuck and you will have to repeat yourself, and even sometimes explain to the medical professional what PCOS is. The lack of knowkedge with medical professionals happens less with endometriosis in my experience, but you will most likely end up explaining what that is a few times as well.

Having a designated area for helpful items in whatever room you spend the most time in is legitimately one of the most helpful tools I've had through this experience. Many days prior to surgery (hoping it gets better, only four days post op so here's to hoping) I'd be in so much pain that I was exhausted and perpetually low on spoons. I made a drawer in my living room that holds snacks, drinks, medication, my heating pad, extra pads, underwear and comfort items, and it has been a legitimate godsend on my really bad days.

Even if you DON'T have symptoms, get checked anyway. Many people have endometriosis and don't find out until they're trying to conceive because they didn't have any symptoms. Endo is super weird in that regard - one strand of endometriosis can debilitate a person, but someone else can have their organs cemented together and experience no issues outside of difficulty conceiving. Even if you think there's nothing bad going on in there, checking in and making sure never hurts.

[definitelynotaqueen]

Oh god yes!

Called my specialist the other day and was told my appointment wasn’t until January. Like yes I know that but that appointment was made under the assumption my condition was x not y. Now I’m in the middle of a flare up I can tell you it’s definitely y not x and therefore I need different pain management and a new plan going forward. Please don’t make me wait til January 🥺🙏

Something I want able bodied people to understand is that I don't want a diagnosis cause I wanna be sick so bad; I want a diagnosis because there is already something wrong with my body but I don't know what the fuck it is.

[jamiecormier]

I'm Backkk!!!!

Hey Everyone, Sorry for the “hiatus”. Things got chaotic but in a good way for the most part. In March 2023, I returned to Baylor in Houston and got the results of my bloodwork – My “Chromosome Microdeletion” is 15.21.1-15.21.2 (its rather small) and very rare. there is no other deletion exactly like mine, there are some that are similar, but I am a medical anomaly (as if I didn’t know that…

[ajyetagain]

yee hospital time