Savesomeposts
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Savesomeposts77 karma
HOLY SHIT
Ok so I am on hardcore immunosuppressants (mtx and ustekinumab) for my own crap and I always give death glares to people coughing next to me because I'm legitimately terrified that I'll catch their pnuemonia or TB or whatever. But now I feel like a total fucking jackass because I never ever thought about people with CF!
I apologize sincerely, I've probably never done it do you but I'll keep my conspicuous hand sanitizer use to myself in the future.
Awesome AMA!
Savesomeposts44 karma
So now that you're one of us cripples, you going to make some accessibility apps? ;)
I don't know about everyone else, but... I want a weather app that is dedicated to pain. I want to be able to find accessible bathrooms quickly and easily. I want an app that zaps people with electricity for saying things like "you're too young to need a wheelchair/cane/whatever" and "you're so inspiring!"
Anyway welcome to the club! I noticed you used the words "wheelchair bound," which is totally fair, but some people use phrases to reframe their use of accessibility devices and make their situation sound more under their control; like "I use a wheelchair." If you're interested, I recommend you feasting on some cripple theory - I liked Too Late To Die Young or Waist High in the World. I don't know how long you've been sick or how long you will be, but those books made me feel like less of a freak :)
Savesomeposts43 karma
Omg I always get the stares. I just smile. People are lucky if they still live in a world where pain and disability are obvious, let them stay ignorant.
I have a friend who gets all snarky "I'm glad you took an interest in my health and wellbeing! Here's a website about my disease so you can donate money and help raise awareness even more!" I wish I had the guts lol
Savesomeposts145 karma
Pain medicine is hard for this exact reason: people get confused between dependence and addiction.
I take painkillers for my chronic pain. Without them it's hard to function, not because I can't face my problems/need them to cope with the stress of life/whatever, but because my body fucking hurts really bad. I can deal, but I don't really want to. That's dependence: I am dependent on my meds to use my hands, just like people with diabetes are dependent on their insulin to digest sugar. People injecting themselves with insulin aren't "addicted," even though if you made them stop they'd have nasty side effects.
One other difficulty of pain management is that there are most certainly people who are both dependent and addicted.
Edit:
Some people seem to be confused about the colloquial definitions of these words and the medical definitions, and for that I'm afraid there's little help. There is a physiological and pharmacological difference between addiction and dependence, however.
Some people seem to think I'm saying opiates don't have the potential to be addictive - they absolutely do. Unfortunately many people think they are intrinsically addictive, and while some science supports that, many studies have refuted the idea that chemicals themselves are addictive and suggested that the roots of addiction are environmental and behavioral (like the famous "Rat Park" experiments.)
Herein is the difference, again, between dependence and addiction - plenty of people consume opiates at "addictive" doses and for extended periods of time but do not seek to be high or to use those drugs recreationally, only to achieve a level of relative comfort in the face of physical pain. Other people get relatively small prescriptions for their wisdom teeth and end up using IV heroin. There are numerous genetic, generational, economic, physical, and sociological factors still yet to be teased apart that lead to a patient leaning one way or the other. It's easy to want a flippant answer and say "addiction is <fill in the blank>," but basically the only thing we can say for sure that makes someone an addict is being addicted to something.
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