Chronically a Ninja Penguin

A 25-Year-Old, Six-Year Kidney Transplant Survivor and author of The Pretend Friend Association. Fighting FSGS since 2007 and POTS/Dysautonomia since 2015. Pepper the Cat says hello.

[chronicallyaninjapenguin]

Totally random post- I love penguins so much I replace the line “joy to the fishes in the deep blue sea” with “joy to the penguins in the deep blue sea.” Because I love penguins.

[chronicallyaninjapenguin]

You might be a transplant survivor if you yell “hey! That’s MY insulin! GIVE IT BACK!” in your sleep. :) 

[lonely-creator]

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Captain America at Disneyland signing with a deaf guest.

This is so important!

[pervocracy]

child handling for the childless nurse

My current job has me working with children, which is kind of a weird shock after years in environments where a “young” patient is 40 years old.  Here’s my impressions so far:

Birth - 1 year: Essentially a small cute animal.  Handle accordingly; gently and affectionately, but relying heavily on the caregivers and with no real expectation of cooperation.

Age 1 - 2: Hates you.  Hates you so much.  You can smile, you can coo, you can attempt to soothe; they hate you anyway, because you’re a stranger and you’re scary and you’re touching them.  There’s no winning this so just get it over with as quickly and non-traumatically as possible.

Age 3 - 5: Nervous around medical things, but possible to soothe.  Easily upset, but also easily distracted from the thing that upset them.  Smartphone cartoons and “who wants a sticker?!!?!?” are key management techniques.

Age 6 - 10: Really cool, actually.  I did not realize kids were this cool.  Around this age they tend to be fairly outgoing, and super curious and eager to learn.  Absolutely do not babytalk; instead, flatter them with how grown-up they are, teach them some Fun Gross Medical Facts, and introduce potentially frightening experiences with “hey, you want to see something really cool?”

Age 11 - 14: Extremely variable.  Can be very childish or very mature, or rapidly switch from one mode to the other.  At this point you can almost treat them as an adult, just… a really sensitive and unpredictable adult.  Do not, under any circumstances, offer stickers.  (But they might grab one out of the bin anyway.)

Age 15 - 18: Basically an adult with severely limited life experience.  Treat as an adult who needs a little extra education with their care.  Keep parents out of the room as much as possible, unless the kid wants them there.  At this point you can go ahead and offer stickers again, because they’ll probably think it’s funny.  And they’ll want one.  Deep down, everyone wants a sticker.

[mikkeneko]

This is also a pretty excellent guide to writing  kids of various ages

[autumncozy]

[angiepantstakesontheworld]

I have the mental/social capacity for 2-4 phone calls maximum per day. Less would even be preferable.

This is a millennial + health care professional who’s people overloaded problem.

This is a real thing.

[chronicallyaninjapenguin]

Celebrate!

When you’re phone-phobic and you finally quit procrastinating and call the doctor about fixing an insulin prescription :)

[chronicallyaninjapenguin]

Dear Blood Sugar,

What... the... heck? 49 now 280, even though I know I barely ate enough carbs to bring you up to 110. I’ve been battling you for seven years (thanks to post-transplant meds), and you still confuse me. I mean, come on, at least be predictable like “normal” non-med-induced diabetes.

Please be 95-110 next time I check. Please. 

Sincerely,

Hannah

[howilearnedtocope]

Mental illness is not your fault.

Mental illness is not your fault, even if there are things that can theoretically help. You don’t have this mental illness because you didn’t do those things.

Mental illness is not your fault even if you’ve been sick for a long time, and have had access to treatment that hasn’t helped. You are fighting real chemical and biological barriers that make this difficult, and it’s not your fault that it hasn’t worked yet.

Mental illness is not your fault even if you self sabotage sometimes. Those actions are a result OF your mental illness, they are not the cause of it.

Mental illness is not your fault, even if you play up symptoms. You want attention because you are suffering, but it did not cause your mental illness.

Mental illness is not your fault even if you are bad at taking care of yourself. Again, mental illness is what makes this difficult in the first place.

I believe that there is always reason to have hope that things can get better, and that eventually you will find a way to feel better.

But mental illness is never your fault. 

[mrs-angry]

oh god.

[kenzisshrinking]

I just started crying. Thank you so much.

[spooniestrong]

Today is World Arthritis Day.

Osteoarthritis is the most common form of arthritis, affecting millions of people worldwide. It occurs when the protective cartilage on the ends of your bones wears down over time.

Although osteoarthritis can damage any joint in your body, the disorder most commonly affects joints in your hands, knees, hips and spine.

Osteoarthritis often gradually worsens, and no cure exists. But staying active, maintaining a healthy weight and other treatments may slow progression of the disease and help improve pain and joint function.

Rheumatoid Arthritis / Disease is a chronic inflammatory disorder that typically affects the small joints in your hands and feet. Unlike the wear-and-tear damage of osteoarthritis, rheumatoid arthritis affects the lining of your joints, causing a painful swelling that can eventually result in bone erosion and joint deformity.

An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body’s tissues. In addition to causing joint problems, rheumatoid arthritis sometimes can affect other organs of the body — such as the skin, eyes, lungs and blood vessels.

Although rheumatoid arthritis can occur at any age, it usually begins after age 40. The disorder is much more common in women.

Treatment focuses on controlling symptoms and preventing joint damage.

[rainbow-goddess]

What Diabetes Is

Ever since the unicorn frappucino was released, I’ve seen an uptick in “diabeetus” jokes. I’ve also seen people posting pictures of candy and cake and saying “Look at my diabeetus ha ha ha,” as if diabetes is some type of joke.

Diabetes is not a frappucino. There is no such thing as “diabetes on a plate” or “diabetes in a cup.” Let me tell you what diabetes actually is.

Diabetes is a small child dying of ketoacidosis because the doctor in the ER thought that child had the flu.

Diabetes is parents who can’t sleep through the night because they have to get up and check their child’s blood sugar during the night to make sure their child hasn’t gone into insulin shock or diabetic coma.

Diabetes is waking up in the middle of the floor covered in bruises and rug burn because you fell asleep after taking insulin but before eating the food that you took the insulin for, and your blood sugar crashed, causing you to fall off the couch and have a seizure.

Diabetes is having to decide whether there is enough insulin to last until you get paid or whether you will skip a meal or two so that you can take less insulin and save money on groceries.

Diabetes is not getting enough sleep because your blood sugar was too high, meaning that you got out of bed to go to the bathroom multiple times, or too low, meaning that you got out of bed to treat the low and then stayed awake to be sure it didn’t go low again.

Diabetes is going to a trendy eating place and discovering they don’t serve diet drinks because “aspartame is poison” and having them tell you to drink orange juice instead.

Diabetes is finding out that your kidneys or eyesight or digestive system or circulation is failing after you’ve lived with the disease for decades.

Diabetes is having people say “So lose weight and it will go away” or “Your kid got that because you fed them too much sugar”.

Diabetes is living every day with a disease that you know could shorten your lifespan while politicians blame people who have your disease for costing the health care system money, as if it’s your fault your immune system decided to attack you.

[dyssupport-deactivated20230307]

Dysautonomia Support Network | WRITERS CLUB

Dysautonomia, POTS, OI, NCS, MSA, PAF, EDS, Chiari, MCAD and Gastroparesis often co-exist. We provide education, support and resources for patients & Caregivers

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[chronicallyaninjapenguin]

Five years ago today, my amazing cousin donated Ned the Kidney to me!

Seven years ago, my cousin saved my life by giving me one of his kidneys. I guess we’re like Superman and Supergirl... they’re cousins, right? Donate life! <3 

[chronicallyaninjapenguin]

Hannah Reimers

My parents gave me this great card for my fifth kidney transplant anniversary. My mom found it... and then took a photo of it and emailed it to me (from across the room) "so you can post it." She's...

This was my fifth kidney transplant anniversary card. Can’t believe today is my SEVENTH “transplantversary!”

[chronicallyaninjapenguin]

Sometimes my Facebook feed is full of pictures of children smiling in their hospital playrooms, people waking up from surgery, and friends taking selfies in waiting rooms... my messages inbox is full of conversations with my friends about their/their child’s medical conditions... my flash drives are full of stories about imaginary friends for my e-book series, many of whom are chronically ill. And I wonder... how did I get from a healthy but wimpy-ish teenager to the chronically-ill ninja girl I am today in the past ten years? I hate chronic illness because what it does to other people, but it’s kind of amazing what I’ve gotten to do because of it. 

[sopherielspeaks]

Let’s end the stigma of shame around taking medication for mental illness. 

When you take medication, it means you are intelligently using the resources available to you, so you can live the best life possible. This is a beautiful and self-loving action. 

Okay and encouraged to reblog if you live with or without mental illness. 

[spooniestrong]

SpoonieStrong wishes you a Happy Passover and a Happy Easter!