Disability Sucks

This blog was created as a senior final project for an English class focused on missing voices in literature.

[missingdisabledvoices-blog]

Postural Orthostatic Tachycardia

POTs is a form of dysautonomia (). It affects the heart, causing it to beat faster than it normally would.

Some diagnostic criteria for POTs: 120 bpm (beats per minute) within the first ten minutes of standing. There are other detailed test that can be used to diagnose POTs that involve measuring heart rate in standing and sitting positions. 

Symptoms: fatigue, headaches, lightheadedness, diminished concentration, shaking, fainting, coldness or pain in the extremities, chest pain, and shortness of breath. 

Everybody with POTs goes through different treatment, but the most common treatments are increasing fluid intake, increasing salt consumption, wearing compression stockings, raising the head of the bed, and taking part in exercises such as rowing, biking, and swimming. 

For more information:

http://www.dysautonomiainternational.org/page.php?ID=30

[missingdisabledvoices-blog]

Fibromyalgia

Fibromyalgia is a musculoskeletal disease characterized by widespread pain and fatigue. It’s causes are unknown but could be related to multiple factors such as genetics. Also there are no specific laboratory tests to diagnose fibromyalgia, leading some doctors to conclude that a patient’s pain isn't real. Due to this believe, fibro can be hard to treat and usually includes physical therapy and pain medication.

For more information:

http://www.niams.nih.gov/health_info/fibromyalgia/#c

[sexioto]

[missingdisabledvoices-blog]

Spoonies

The term “spoonies”, used as a term of endearment for those living with a chronic illness is a term less commonly known to this without chronic illness. The term originated from an article by Christine Miserandino called “The Spoon Theory” about her life living with Lupus. In the article, Christine recounts trying to explain to a friend what it’s like everyday to be constantly sick. Christine gives her friend twelve spoons and explains that each daily action will take one spoon. As her friend begins listing off daily tasks, Christine stops her explaining how hard each task actually is. Waking up isn’t just waking up, it’s opening her eyes, pulling off the covers, getting out of bed, and taking medicine. This much moving costs her a spoon. By the end of the theoretical day, her friend is left with one spoon to get dinner. 

As someone living with a “spoonie” I find this description extremely accurate. Each day, my mom has a list of things that she wants to accomplish, but often cannot finish all of them in a day. She runs out of spoons sometimes even before lunch time, and is often upset and apologetic over what she can’t get done. I try to explain that she doesn’t need to apologize to me, because once you run out of spoons, you can’t get them back.

Christine’s Original Article:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

[missingdisabledvoices-blog]

Cystic Fibrosis

Cystic Fibrosis is a condition that affects the lungs and digestive system. Cystic Fibrosis affects mucus and the consistency that it is formed in. Mucus is naturally thin and slippery, but in an individual with Cystic Fibrosis, it becomes thick and sticky. This causes block ups of mucus throughout the lungs and digestive system. 

Due to the severity of Cystic Fibrosis, newborns are now screened for it before symptoms have time to appear. Symptoms include: coughing, wheezing, breathlessness, lung infections, stuffy nose, foul smelling and greasy stools, poor weight gain, intestinal blockage, and constipation. 

Cystic Fibrosis is a defect in the gene that regulates the movement of salt in and out of cells. This is a recessive trait that is inherited from parents, but it has to be developed from both parents for the child to develop Cystic Fibrosis. 

There is no cure for Cystic Fibrosis, but there are plenty of treatments to help control symptoms and complications. Such treatments include antibiotics and mucus thinning drugs, as well as strategies to help with breathing. 

For More Information:

http://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/basics/definition/con-20013731

[dailylifewithchronicillness]

My mom has fibromyalgia, is there anything I could do to make her life easier? I've asked her, too, and I try to help her with the more difficult things, but I'd like your suggestions too.

Hey Anon!

First, it’s incredibly lovely that you’re thinking of your mom and wanting to help. She’s lucky to have you as her child!!It’s definitely difficult to say what would be best, because I don’t know your mom’s limitations. But here are a few general things I came up with:

1. Groceries/shopping: sensory processing is hard for people with chronic pain and it’s incredibly easy to get overwhelmed by the sights/smells/people/craziness of crowded stores. All the walking involved can also be a problem. I personally have given up before I’ve gotten everything that I needed simply because I couldn’t handle it any more. It might be nice to accompany her to the store or to go in her place.2. Carrying heavy things: laundry, groceries, moving boxes, etc. Lifting and moving heavy things is very taxing. 

3. Cooking, especially cooking ahead: even making freezer meals so that you have a stash of food ready to go would be good - that way, if your mom is having a bad day, she can throw something in the oven/microwave and there will be a nutritious meal ready with minimal effort.

4. Support her. Validate her. Let her have bad days and don’t judge her for them. Also, don’t try to be a “helicopter” over her shoulder; it’s super important to care for her, but your mom knows her abilities and limitations best. I hate it when my loved ones make assumptions about how I’m feeling and what I can do; my parents, especially, used to constantly hover and tell me what I could and couldn’t do or question my decisions. Often, they were right but most of the time, I felt more shamed then anything, even though it was only concern and love driving their opinion. Those are just a few brief ideas - lovely spoonies, any suggestions?

Wishing you and your mom the best. xo

[mondsichelmadonna]

shoutout to mentally ill people who are in such a bad place that they can’t even fulfill basic tasks like grocery shopping or showering or getting dressed or taking their meds properly you are still wonderful and worthy of respect and i love you.

[stophatingyourbody]

Quick shout out to neurowonderful! Who has been an excellent resource about autism and all around awesome person! Thank you so much for all that you do! I’ve learned so much from you as I’m sure so many more have!

CLICK THROUGH TO HER BLOG http://neurowonderful.tumblr.com/

Be sure to check out her YouTube videos and subscribe https://www.youtube.com/watch?v=ez936r2F35U

[sizvideos]

Beauty standards redefined: a teen model with Down syndrome

Video

[hollowedskin]

You go Maddy, keep kicking ass <3 <3

[nonfatalnerdisms]

Chiari is a condition wherein your skull is too small to contain your brain, and a part of your brain extends beyond your skull, pressing into your spinal chord

Approximately 1 in 1,000 people suffer from Chiari

The most common symptom is a severe headache that is often...

[positivedoodles]

[perksofbeingdisabled]

I introduce you to bionic pop singer, Viktoria Modesta. How cool are those legs?

[ehlersdanlossupport]

[k-o-colitis]

whatshouldwecallchronicillness I found you in this article. Good job spreading awareness.

[whatshouldwecallchronicillness]

Well that’s kind of cool!  Thanks for letting me know, k-o-colitis!

[beenwandering]

help I’m having emotions about a cartoon antidepressant trying to be useful

[1-800-ass-butt-blog]

DID YOU GUYS SERIOUSLY GIF AN ABILIFY COMMERCIAL 

[kdaziz]

yes but look at it, it cares about her and just wants to help her be able to function. It’s like “I know you’re sad. here, I’ll help you.”

[mcgonagirl]

LIKE OKAY THOUGH can I explain why this is exceedingly brilliant??  Because when anti-depressants work right, that’s what they DO.  They don’t make you happy or emotionless or unhealthy in any way, they make you FUNCTIONAL.  They make it so that a depressed person who can barely get out of bed can start to support themselves again and more importantly, start to THINK for themselves again without the permeating presence of depression.

Depression is a cyclical disease, that tells you to think a certain way, and, because you’re depressed, you generally believe it, and then things get worse and worse.  The ONLY thing anti-depressants do is to STOP that cycle in its tracks!!  Which is something to be ecstatic about and celebrated, even if you don’t realize it at the time, because when you’re depressed, getting out of bed is climbing Mount Everest.  Antidepressants help stop that cycle so that one day soon, getting out of bed can JUST be getting out of bed.  They don’t even expedite the recovery process in most cases, they just make recovery POSSIBLE IN THE FIRST PLACE.  So this little guy is portrayed with a fuckton more accuracy than I ever expected from a commercial.

[metalheadswaltzing]

It’s back and adorable

[darklittlefaun-deactivated20161]

I believe in body positivity, feminism, and always using your turn signal.

[positivedoodles]

[missingdisabledvoices-blog]

Multiple Sclerosis

Multiple Sclerosis (MS) is a disease of the central nervous system (CNS) that basically disrupts flow of information to the brain. MS causes the deterioration of myelin in the CNS causing neural information to move slower, as myelin sheaths make neural messages move as quickly as possible. 

Some common symptoms of MS are: fatigue, difficulties walking, numbness, tingling, vision problems, dizziness, vertigo, pain, depression, cognitive changes, bladder and bowel issues, and sexual problems. Some less common symptoms are: speech problems, swallowing problems, itching, tremors, seizures, breathing problems, headaches, and hearing loss. 

No one thing can provide a diagnosis for MS, just like no one thing can cause it. To diagnose MS, the patient’s physician must: find evidence of damage in two separate areas of the CNS (in either the brain, spinal cord, or optic nerves), find evidence that the damages occurred at least one month apart from each other, and rule out all other possible diagnoses. If a patient does not meet these specific requirements, they cannot be diagnosed, and therefore, cannot be treated. 

There is currently no cure for MS. But, there are plenty of procedures and medications that can help with attacks, slowing down progression and symptoms of the disease. 

For more information: 

http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/treatment/con-20026689

http://www.nationalmssociety.org