Kick At Darkness
You are not alone.
Though at some times, it may feel like it. That feeling is lying to you.
There are always people that are here for you - there are actually a lot and a big community that's ready to rally for you.
Inspirational
Most disabled and chronically ill people wince at the word, “inspiration(al)”. It seems harmless initially, but the toxic positive people and a specific breed of condescending ableists have made it anything but harmless.
“You're just fat”
TW: weight, fatphobia
Moving through the world as a disabled woman can be monotonous: have you tried to diet? What about exercising?
Palliative Care
Palliative care focuses on easing symptoms like pain and nausea. They also can provide you and your family with extra support, including emotional and spiritual support if you're struggling with the mental toll of everything. Many providers are able to make home or telehealth to cut down on the amount of (often difficult) trips to a clinic or hospital. A relatives's provider will go to their house to collect samples for the lab or take simple x-rays.
The Future is Squeaky
I'm celebrating an entire year of writing for The Squeaky Wheel! My first article, “Man devastated to learn his girlfriend (with IBS) poops”, was published on November 5, 2023. It's been an awesome year of comedy and community; TSW has grown so much in just the year I've been here.
The October Slide
What is the “October slide”?
Put simply, many disabled and chronically ill people have more symptoms during the transition from summer to fall - often in October. Though it may initially seem very strange, it does make a lot of sense! Major changes in the weather and barometric pressure often coincide with a flare; October often has some very drastic ones!
Disabled & Barren
Many disabled people have children and everyone's family and experience is different. However, many people are unable to have children - biologically or otherwise - due to health issues. I am one of many.
8 Tips to Empower Your Children's Self-Confidence by Sean Morris
Building self-confidence in children is a vital aspect of their growth and development. As a parent, your influence is paramount in shaping their self-esteem and belief in themselves. By adopting various nurturing approaches, you can create a supportive environment that fosters their confidence. This foundation will empower them to face challenges with resilience and a positive mindset throughout their lives. Here are some tips to get you started:
PEG tube basics: care & complications
Particularly because of the location, daily care of your stoma (the hole the tube is in) is required to keep it healthy and prevent skin irritation and infections. Much like the first time you use it, it can seem intimidating but it's quite simple!
Remember to always wash your hands before and after doing anything with the site!
PEG tube basics: usage
Feeding
Using a PEG tube may seem scary and intimidating at first, but it's easy once the anxiety goes away!
Most tubes have adapters with two or three ports; the balloon type has three, and the ones without a balloon have two. NEVER use the smaller port that goes to the balloon; only use the larger ports (they usually have a cap to close them.
PEG tube basics: types and placement
In order to get adequate fluids, nutrients, and medications, a feeding tube may be needed. Most “tubies” have some degree of dysphagia (difficulty swallowing), and may receive one or more types:
Metal music to soothe the soul: interview with Jake Segura of ‘Citizen Soldier’
I started doing a deep dive into metal bands and their positive impacts recently, and though there are so many bands that are changing the world, there's always been one that stood out: Citizen Soldier.
Lethal allergies aren't your punchline
TW: ableism, bullying, anaphylaxis
The fact that that has to be said is sad. The covid-19 pandemic unfortunately showed just how many people don't care about their fellow humans, and that number goes down when you throw in disabled people or something that might slightly inconvenience them.
Anaphylaxis
Sniffling, sneezing, and itching are the worst that allergies can be - right? Unfortunately, they can be so much worse.
There's a whole spectrum of allergy symptoms, but the worst is anaphylaxis (also called anaphylactic shock). If untreated, anaphylaxis is fatal!
The strange world of vitamin D & B12 deficiencies
The combination of symptoms from vitamin D deficiency and vitamin B12 deficiency had produced a near perfect syndrome that mimicked lupus.
The Keyhole Craniotomy
The thought of performing a brain surgery through a hole the size of a penny sounds like science fiction - but it's possible! This surgery offers a lot of benefits over the traditional "open craniotomy". This isn't suitable for everyone and every type of surgery, but is a groundbreaking surgical technique.
Assistive Animals
There are three main types of assistive animals: therapy animals, service dogs (occasionally miniature horses), and emotional support animals.
Autosomal Dominant Hypercalciuria
Simply put, autosomal dominant hypercalciuria is a rare genetic condition that causes the calcium receptors in the kidneys to take too much calcium out. This often causes the kidneys to leach calcium from the bones, leading to osteoporosis and osteopenia and hypercalciuria (high levels of calcium in the urine). This can cause recurring kidney stones, UTIs, and abnormal levels of calcium and other minerals in the body.
ABLE accounts
With disabilities, the income and asset restrictions for SSI and Medicaid, it's usually impossible to save up for anything! I'm sure I'll discuss how outdated the caps are in a future post, but for now, I want to discuss something that many people - including those who qualify - don't know about: ABLE accounts.
New Rule: don't be ableist on TV
TW: ableism, hatred, ageism, fatphobia, ableist slurs - also directed to CHILDREN
New rule: hateful people get de-platformed.
Though Bill Maher mostly got famous for roasting Republicans, he's made sure that everyone knows he can be just as hateful as a conservative, while still being an atheist who likes weed.