The Chronic Files

Just my daily thoughts, giggles, inspiration, and rants. Fighting chronic illness but staying strong every day 💜💚

[postllimit]

why iphones gotta take two million years to turn back on after they die like you plug em in and you’re all ready to start texting again but they’re like “nope. i gotta take some time for myself. figure out who i am. you hurt me too much the last time. let me think.”

[catrasavedme]

also psa to my able bodied followers:

being tired because you stayed up late is NOT the same as a chronically ill person being exhausted because their body literally isn’t working right.

[fibro-battling]

I read somewhere that an able bodied person would have to stay up for 4 days to experience the fatigue of the average person w chronic fatigue

[thischroniclife]

I read something similar for fibromyalgia - stay awake for 3 days straight and then try to function. It makes everything we do seem way more badass since we’re doing it while running on empty.

[raziel-korihor]

[bekindbegoodbebrave]

"at least you don't have cancer..."

the next time someone tells me “it could be worse, at least you don’t have cancer” i’m just gonna stare at them for a really long time and say something like..

“can you even pronounce my condition? do you even know the treatment protocol? do you know anyone with a chronic condition? or what it’s like to have to live in a body that refuses to work? 

Who taught you it was okay to rank suffering?  Who told you there was a hierarchy of illnesses?

Why does my suffering not count?

Because your too uninformed to care about it? 

That’s not very fair…”

…. like I feel sorry for whoever gets this rant because I am so done and it is SO WELL REHEARSED.   

[bendyandbroken-archived-deactiv]

Common Symptoms in Ehlers Danlos Syndrome

Skin:

General EDS skin traits include:

Easy bruising, delayed wound healing, differing types of scarring.

Thinner skin than normal, especially in the Vascular type.

Those with VEDS have translucent skin where the blood vessels below are clearly visible.

Soft, velvety skin that is fragile and sometimes highly elastic (stretchy) is found, especially in the Classical type.

CEDS may cause wounds that split open with little bleeding and leave scars that widen over time to create characteristic shallow “cigarette paper” scars.

Surgical incisions may present problems with healing, with stitching EDS skin sometimes described as “like sewing butter.” often requiring sutures being closer together and left in for a longer time than usual.

With severe CEDS, even just leaning on the table with your elbows can cause the skin to split or may have molluscoid pseudotumors on elbows and knees. (molluscoid pseudotumors are small, spongy tumors consisting of fat surrounded by a fibrous capsule found over scars and pressure points).

Skin that sags and wrinkles is characteristic of the Dermatosparaxis type of EDS. Extra (redundant) folds of skin may be present as affected children get older.

Skin hyperextensibility to some degree occurs in all types of EDS except Vascular.

Cardiovascular:

People with EDS tend to have low body temperatures, may have trouble controlling their body temperatures when exposed to heat or cold, and many have blood pressure problems.

Some have dilated aortic roots, incompetent heart valves, and autonomic dystonia or POTS.

Many people with EDS bruise very easily and often severely.

It can be difficult for a medical professional to “feel” EDS pulses.

Mitral valve prolapse is not a sign of EDS, though someone with EDS may have MVP; it is not diagnostic for this syndrome. In some types, arteries including the aortas are very fragile and can rupture causing a medical emergency.

IV (intravenous) access and even sometimes simply drawing blood for testing may require multiple attempts; using a “butterfly” needle and syringe is much more successful than the use of a vaccutainer which draws the blood rapidly by the use of suction.

Neurological:

Poor balance, severe headaches including migraines.

Decreased deep tendon reflexes.

Intracranial vascular abnormalities.

Brain “fog”, a sense of not being present; absence of focus or a lack of clarity

Spinal stenosis (narrowing of spinal column) and/or scoliosis. 

Chiari malformation occurs in some EDS patients.

Dental:

Half of all EDS patients have a hypermobile tongue, and are able to touch at least the end of their nose with it easily.

A high palate and crowded baby and adult teeth are common, even though many EDS patients have smaller than normal teeth. The high palate and smaller teeth can make fitting dentures very difficult even when explained to the dentist prior to the dentures being made.

Pre-molar and molar teeth often have high cusps and deep fissures with root problems, and enamel hypoplasia can cause decay and possible early extractions. Sometimes teeth actually crumble when losing the enamel.

Patients with Classical type offer suffer with juvenile periodontal disease.

All EDSers are cavity prone, and have increased bleeding from anywhere in the oral cavity due to the fragility of tissues.

Braces can cause problems as they can damage the gums and tongue while moving teeth quickly.

TMJ pain and clicking occur in about 30% of the general population, and about the same incidence occurs in EDSers.

Often if in a dental chair with your mouth open for an extended period of time, the joint will repeatedly sublux. 

Lidocaine often works poorly or not at all with EDS patients.

Some people with EDS complain of always feeling like there is a lump in their throat when swallowing, and often have other swallowing and voice problems. 

GI system:

Gastrointestinal complications of EDS run literally from one end to the other.

Frequently EDSers suffer from reflux and GERD, stemming from an incompetent esophageal sphincter that allows stomach acid to backflow up the esophagus and cause burns in it.

Diverticula have been seen throughout the G.I. tract.

Tissue extensibility and laxity can also cause lack of contraction of the stomach, causing food to not move down into the intestines.

Megacolon and rectal prolapse may also occur, primarily in childhood but megacolon is also seen in adults.

Irritable bowel syndrome is a common co-diagnosis. 

Eyes:

An EDSer may have many different eye problems depending on the type of Ehlers-Danlos they have including blue sclera, microcornea, epicanthic folds, and wide-spaced eyes. 

Many EDSers are photophobic, some squint causing an “angry” appearance and angiod streaks.

Loose tendons and ligaments around the eye create hard working muscles that get tired.

Strabismus is the medical terms for eye conditions commonly called by these various names: eye turns, crossed eyes, cross-eyed, wall-eyes, wandering eyes, deviating eye.

Myopia, astigmatism, and early presbyopia (a vision condition in which the crystalline lens of your eye loses its flexibility, making it difficult to focus on close objects) occur often in EDS patients.

Dry eyes are a common and uncomfortable problem.

Other EDS related problems are detached retinas and ectopia (displaced) lenses.

Pain:

Pain with Ehlers-Danlos syndrome can range from none to chronic debilitating pain. It is subjective, individual, and different for each of us. 

Some with EDS do not have pain; others develop it later in life, and others begin to suffer severe pain as children.

Often pain is undertreated in children, the elderly, and minorities.

Medications often used with EDS are: muscle relaxants, NSAIDS, steroids, lidocaine patches, antidepressants, narcotic and nonnarcotic pain medications. 

Pain can be completely debilitating and keep you from needed sleep.

[source]

[cryptidinpjs]

What my body is basically doing to itself:

[empathyandreferences-deactivate]

Spoonie Probs:

“Why does your purse sound like it’s full of pills?” “Because it’s full of pills.”

[creativeronica]

pills, medical products, and sadness.

[quotesfromscrubs]

[chronicallyinvisible]

i was thinking the other day that when you’re chronically ill life can become entirely about your illness and it almost feels like there’s no room for anything else. like life is meant to be multi-faceted, when you’re able-bodied it can be about having kids and getting a degree and holding down a 9-5 job and trying out lots of different hobbies and falling in love with someone and traveling the world, and none of those things cancels out the other. but when you’re chronically ill the illness can become this overarching thing to the point where you’re literally unable to see any of that other stuff, and it feels like life is just about being sick. but it’s like, where do you draw the line?

life can’t just be about being a sick person, but it also can’t not be when you have a chronic illness, and it’s so hard to stop seeing yourself just as that sick person and start allowing yourself to be a mother or a university student or an office worker or a traveller or a concert-goer or a husband or a socialite, because it’s constantly in the back of your mind that you are sick and you always need to be considerate of that. finding that balance between your health and the person you’d like to be or the life you’d like to have is so, so hard

[chronicillnessbyash]

I am looking to follow more blogs. Please reblog if you blog mostly about your health (please no “thinspo” or “fitspo” blogs!), being a spoonie, have PCOS, bipolar, RLS/PLMD, CFS/ME, Fibro, scoliosis (or more specific: lordosis), diagnosed insomnia, ADD (I was diagnosed before they lumped it all together…. And now I feel old. Ugh), struggle with fertility, have PTSD from emotional abuse…. Yeah I’m pretty fucked up. I just wanna follow folks who I can relate to. And following random blogs isn’t helping. So please. If you can relate. Please reblog. Or follow so I can follow back. Thank.

[blogofkindness]

Hey Spoonies! Check this out?

http://www.lupuschick.com/#!blank/c190

You can go to the  “share your story page” and click on any chronic illness (doesnt have to be lupus). It will then show you to a story with someone with that condition!

Please check it out spoonies =)

Also if you want to be a part of this please message me about it and I would be more than happy to interview you.

[myalgicencephalomyelitiscfstom]

[whatshouldwecallchronicillness]

“Are you going to change out of your PJs at all today?”

Me:

[ehlersdanloszebra]

When you finally get up enough energy to be a functioning human being,

it goes like

[quotesfromscrubs]

I usually don’t like thinking about the future. I mean, let’s face it; you can’t predict what’s gonna happen. But sometimes, the thing you didn’t expect is what you really wanted after all. Maybe the best thing to do is just stop trying to figure out where you’re going, and just enjoy where you’re at.

John Dorian (via quotesfromscrubs)

[sicklord]

Empathy cards by Emily McDowell Studios! Seriously, these are amazing for illnesses. Link here: http://info.emilymcdowell.com/empathy-cards-for-serious-illness/

[chronicallycandid]

Ehlers-Danlos Syndrome

Collagen is a major component of the human body.

Collagen is defective and therefore:

Skin stretches and scars easily.

Joints are hypermobile and “flexible”.

Dislocations are common and frequent.

EDS is mainly invisible.

EDS is degenerative. 

Pain is severe and lifelong.

Lifelong, at age 17, lifelong, is not the word you want to hear.

Degenerative is another word you don’t want to hear.

Invisible, severe, degenerative, lifelong… Ehlers-Danlos Syndrome.

Never judge a book by its cover, because if the book is like me inside it is falling apart.