painmanagementprincess-blog

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Part time blues

I have had to get a part time job to cover my increasing medical costs and I had to go in for a drug test, I’m not sure how to explain the pharmacy that my results will show. Abled body people have no idea the anxiety doing what comes second nature to them can cause someone who has a chronic illness.

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I wish

I wish I could, I wish I could that is what I say over and over to myself. I wish I could feel something other than pain. I wish I could feel happy, I wish I could safe, I wish I could feel satisfied. I wish I could feel anything other than pain, sadness, anger, and frustration. When an illness takes hold of your life it strips you down to the ground. I can mimic all other emotions, but all I hear is pain, pain, pain screaming in my ears.

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something other people don’t realize about chronic illness: Just because I stopped talking about a symptom doesn’t mean it went away, it just means that I realized you were sick of hearing about it

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A reminder to myself and others: It’s important to let yourself rest when you need it 💙

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There are so many times when even the simplest things, like going to the market for food can get pushed back because I can’t count on my body to cooperate. People who are healthy can’t understand the challenges we face, and comments like “I wish I could stay home all day” or “if you got out more you would feel better”, are not only insensitive they are cruel.

Chronically ill young adult problems #9

You don’t get to travel or make spontaneous plans like other people your age do. You can’t backpack across Europe or go to Florida for spring break when you have unpredictable symptoms or bulky medical supplies. Sometimes you can’t even meet your friends for dinner without advance notice because you don’t know how you’ll feel, you don’t know what you can eat on the menu, and you don’t know whether or not the restaurant they’ve chosen is accessible. Everything you do requires planning, which can suck the fun out of life. 

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A wish for all of you who live with chronic pain

May you have more pain free days

May you be treated with compassion and kindness

May you have someone in your life that you can lean on

May you have restful nights

May you be treated with dignity and respect

May you have no guilt for all the times you are unable to do all things others think you should do

Most of all I hope you treat yourself fairly and understand that you are not your disease, you are a person worthy of love

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Courage

It takes real courage to live each day in pain, to fight back against an illness that destroys your body and your soul, to move among the healthy as though you are normal, and to smile through the tears. I applaud you, I celebrate you, and I understand your pain. Don’t let anyone break your spirit, especially those who can’t or won’t try to understand your pain.

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How I feel when a pain flare rises up and bites me in the ass

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Me explaining to my doctor that 4 pain pills a day is my biggest issue for the day

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That’s when you whip out the pharmacy in your backpack and say how healthy do I look now:)

Every time I see a doctor for a specific issue

Doctor: So otherwise you’re healthy?

Me: HAHAHAHAHAHAAHAHAHAHAHAHAHAHAHAHAHAHAHAHave a seat. Do you want this chronologically? Alphabetically? Top to bottom by organ? I’ll start with some of the more common conditions to get your warmed up.

[painmanagementprincess-blog]

Yep there are days when I feel 80!

"Sweetie, you're too young to have all these medical conditions"

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Or that you wish you could get paid for doing nothing all day.  My disability check is so small it does not even cover my pharmacy co-pay.  Please, I wish I could work a full time job again and cover my drugs, my mortgage, my food, my electricity.....

Do yourself and disabled folks everywhere a favor

Never tell a disabled person you wish you could spend all day in bed

Never tell a disabled person you wish you could spend all day doing nothing

We know that we’re severely limited by our disabilities. It affects us every single day of our lives. We KNOW society sees us as useless fuckarounds. Don’t rub your damn privilege in. It’s extremely harmful, EXTREMELY dismissive of our very real disabilities, and extremely ableist. Do. Not. Do it.

[painmanagementprincess-blog]

Some people can lift 200 pounds. But if they carried it everywhere they went for an entire day without ever putting it down, they’d severely tear their muscles and cause permanent damage to their body.

Some people can enter a 140° car in the summer to get something out of the car. But if they stayed in the car, they’d die from the heat.

Some people can hold their breath underwater for 30 seconds. But if they tried to go scuba diving without the necessary gear, they’d drown.

Clearly, someone doing something for a short period of time does not automatically mean that they can do it indefinitely with no problem.

So why do people assume that if someone can walk for a few seconds, they don’t need a wheelchair?

[painmanagementprincess-blog]

I just got a new hospital bill in the mail