Sometimes it's hard to remember not everyone lives in the medical world. I'm guilty of dropping a, "Oh yeah I totally just shot up in LAX before my flight" into everyday conversation, and I forget other people don't realize I'm not talking about heroin, I'm just talking about fondaparinux...and most people don't know what that is either.
So, I've decided I'm going to compile a dictionary of sorts. All of the terms you should know when hanging out with a sick chick. As the title says, this is only part one. If I leave anything out please feel free to email me or message me on any of my social media accounts, which I'll leave at the bottom of this post! I'll give credit to everyone for lingo and definitions :)
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Chronic Illness - Meaning I'm not simply going to "get well soon", this is always going to be a part of my life. There may be better days or worse days, but it will always be here.
Disability - To quote the ADA, "a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history of such impairments, or a person who is perceived by others as having such an impairment". You can see the definition isn't clearcut. You won't always be able to look at a person and determine their disability, so it's important not to judge. Some disabilities are invisible, but that doesn't make them any less real.
Comorbidities - Diseases that are friends with other diseases and like to throw ragers in the same person...it's super cool and fun when you happen to be that person...
Trigger Event - Sometimes a person can have a genetic disease without knowing, either the symptoms are mild or it's dormant waiting to be activated. It takes a trigger event, such as an injury or serious illness, that stresses one's system and in turn sets off the disease. If you have a predisposition to certain diseases a trigger event is also applicable.
Tubies - people who are too cool to need food, so they get nutrition through a either an NJ, ND, NG, G, GJ, or J Tube.
Spoonies - The chronic illness community, aka, the best people you'll ever meet. Well, I might be bit biased. The name comes from The Spoon Theory, which is another definition itself, so I just linked in the original blog post.
Online Community - No, they aren't sketchy. Sometimes they're the only people we can talk to because despite being across the country, they're the only people who understand us. Generally they aren't creepers. Generally.
Off Label Medication - Most of the medication I take. It's approved for other diseases, but just not mine, yet is known to help my disease(s). So, doctors will prescribe it for me, but insurance won't always cover it since there's "no known indication" for my disease(s). On this note - check out OPEN Act and urge your Senators to pass it because it would make Off Label Medication, On Label for rare diseases, like some of mine - basically it's super important.
Pretty Ill - A consequence of invisible illness, we don't look sick. In fact sometimes we look damn good. Don't judge a book by its cover, what you see is not the reality when it comes to invisible illness. I know I may have just posted a super pretty picture on Instagram, but I also may have just gotten out of the hospital. Doesn't make either one any less true or real.
Central Line - For treatment frequent infusions of various things (fluids, blood, antibiotics, etc.) are necessary. It's a pain to constantly get poked for an IV and a lot of us are really hard to stick, so it's sometimes easier to put in either a PICC Line, PORT, or Broviac to name a few. These are lines that stay in 24/7 and can be accessed at any time, they go directly to your chest - even a PICC Line, which is accessed at your arm.
Care Packages - Things people send you in the hospital. Most people send balloons, that's nice and all, it really is the thought that counts! But, when you're in the hospital all you want is some dry shampoo, lotion that smells pretty, and nail polish. Oh and fuzzy socks! Lots and lots of fuzzy socks!
Side Effects - There's a price to everything, and even the most beneficial medications can come with a huge cost. So yes, while my meds make some things better, they also make other things worse. But, it's a trade off that many of us have to take. Some side effects can be; dizziness, nausea, weight gain, weight loss, hair loss, acne, moodiness, bleeding risk, headaches, etc.
Paradoxical Effect - When you take a medication and you get the opposite effect. For example, if you're given benadryl, which is supposed to make you drowsy, but instead you're wired the entire night. You could see how this would be a problem with certain medications, and there's no way of predicting a paradoxical response until you take the medication.
Contraindicated - When a treatment is inadvisable because of a condition or another treatment. For example, using heparin (a blood thinner) for me for a blood clot is contraindicated because it almost killed me.
Champagne Problems - People living with chronic illness/disability/rare disease/mental illness don't have the luxury of living with champagne problems. Sometimes you need to be aware of this, not saying to sensor yourself around me or anyone else, but complaining about needing to lose weight when you're only a size 2 in front of a tubie friend of mine who would give anything to be able to chew and digest food normally is a bit insensitive.
Flare Up - Just as you thought your symptoms were calming down, one acts up and the rest follow, often causing a crash.
Brain Fog - This I will have to wait and write in Part 2 because I am currently...what's that word? Oh right, experiencing.
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So, here's my "Sick Chickitionary" so far - let me know what you all think and what you'd like me to add!
Email me - contact.sickchick@gmail.com
Or, find me on Social Media and message me there!
Twitter - @sick_chicks
Facebook - facebook.com/thesickchicks
Instagram - @shirastrongin
Xoxo,
Sick Chick