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“Get comfortable with being alone. It will empower you.”

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“Painful feelings are, by their very nature, temporary. They will weaken over time as long as we don’t prolong or amplify them through resistance or avoidance. The only way to eventually free ourselves from debilitating pain, therefore, is to be with it as it is. The only way out is through.”

— Kristin Neff

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I’ve worked in oncology with patients daily dealing with cancer but never thought I’d have to take one of the chemo drugs myself possibly forever (or the liver gives out)

At least you don’t have cancer

At least you don’t have cancer…I’m sure this phrase isn’t meant to land with the anger inducing weight that it does.

No, I don’t have cancer. Yes, cancer is horrible. Yes cancer can be fatal. At the same time cancer can be treated/cured. Rheumatoid Arthritis can’t be cured it can only be managed.

How is it managed? By those same drugs that help treat/cure cancer. I am starting methotrexate this week. I hope it works for me. If it works I will be on it long term. There is no set end date.

So no I don’t have cancer, yet I get to take low dose chemo every week for as long as it works for me. That’s the other kicker, it won’t work forever. I get to go in every 3 months to make sure my liver is working properly and not dying from the meds.

So yes, let’s thank God I don’t have cancer.

I have lost a few close friends to cancer and it is horrible. I’m not trying to say it’s not. The two simply aren’t comparable. Yet people try to tell me I should be happy with my disease that unless controlled with these awesome drugs will leave me disabled.

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Sylvia (my cat) has not left my side for 3 days. Couldn’t do it without her. Shout out to spoonie pets!

Having a pet to cuddle in bed on my worse days makes things so much more bearable

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When a medication’s side effects makes me unable to function.

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Start Tuesday 😩

Great thanks for the news

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Love this so am passing on

To any of my chronically ill friends who are awake right now because they feel too sick or are in too much pain to sleep; you’re not alone. I hope you get the rest you need, no matter how hard it is to get there. I see you and I’m right there with you. You’re awesome.

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“Never forget the people who take time out of their day to check up on you.”

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So powerful!

“If you were happy before you knew someone, you can be happy after they’re gone.”

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When your mind is occupied by the future instead of this moment 💕 pause , breathe, bring yourself back to the moment 💕

“Living with anxiety is like being followed by a voice. It knows all your insecurities and uses them against you. It gets to the point when it’s the loudest voice in the room. The only one you can hear.”

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“I crave space. It charges my batteries. It helps me breathe. Being around people can be so exhausting, because most of them love to take and barely know how to give - except for a rare few.”

— Katie Kacvinsky

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Friends that you would do anything for until you realise it’s one way only

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That constant struggle between “I can’t show my symptoms or I’ll be a burden” and “why doesn’t anyone realize I’m suffering?”

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With cutting benefits and fighting the “opioid crisis”, there’s a war on the disabled and sick. And we need the able-bodied and healthy to step up and fight. We’re in pain, we’re tired, we’re home-bound and sick. We can’t protest as easily, we can’t make calls and send letters as easily, we can’t be a the front lines of our own fight even when we really want to be. Help us.

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ANYONE who has a progressive disability, chronic illness, just gets sick a lot, cancer, etc. seriously look into the app called Updoc: Health Diary

It’s amazing. It has custom intensity scale ( 0 to 5, 0 to 10 and a custom one), it has 24 hr clock or 12 hr clock, its REALLY easy to use (you just hit like, ‘symptom’ click which symtpom and say how intense), it tracks symptoms, doctor visits, measurements, medications, and the developer is super hands on and tries to fix any issues/bugs as fast as they happen. Seriously I love this app i dont know where I would be without it.

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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.

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