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Yesterday, I managed a mile and a half on the treadmill despite being in a flare! I’m swollen and in desperate need of new running shoes, but it was 100000% worth it. Big big big thank you to those of you who were so encouraging on twitter. It’s motivating me to get up and do it again tonight. You guys are the greatest.
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Yesterday, I managed a mile and a half on the treadmill despite being in a flare! I’m swollen and in desperate need of new running shoes, but it was 100000% worth it.

Big big big thank you to those of you who were so encouraging on twitter. It’s motivating me to get up and do it again tonight. You guys are the greatest.

    • #Personal
    • #RA
    • #Rheumatoid Arthritis
    • #JRA
    • #JIA
    • #Still's Disease
    • #JA
    • #Arthritis
    • #Endo
    • #Chronic migraine
    • #Autoimmune
    • #Chronic illness
    • #Chronic pain
    • #exercise
    • #running
    • #fuck you immune system
    • #Fibromyalgia
    • #Rare disease
    • #Autoinflammatory
  • 2 weeks ago
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If your compassion does not include yourself, it is incomplete.

Siddhartha Gautama

Remember this today. It’s especially important for those of us in a flare. Don’t insult your body. Treat yourself with kindness. Talk to yourself with kindness. Stop calling yourself names because you have moon face or the extra 10 prednisone pounds; they are not forever. If you need to rest, rest. If you need pain meds to make it through your day, it’s okay; stop fighting it. It’s okay if you can’t get off the couch.

It’s okay if you could only manage a short walk around the block instead of a jog. It’s okay if you couldn’t get out and exercise today. It’s okay if you couldn’t eat solid foods today. It’s okay if the only thing you could do was breathe.

You’re not lazy. You’re not a lost cause. You’re not useless. You’re in a flare. There will be days kinder than this one.

    • #Quote
    • #Compassion
    • #Kindness
    • #Self love
    • #Self care
    • #Autoimmune
    • #Chronic pain
    • #Chronic illness
    • #RA
    • #JRA
    • #JIA
    • #SLE
    • #Lupus
    • #Rheumatoid Arthritis
    • #Arthritis
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Sjogren's
    • #Ankylosing spondylitis
    • #IBD
    • #Crohn's
    • #Ulcerative colitis
    • #Fibromyalgia
    • #CFS/ME
    • #POTS
    • #Reactive arthritis
    • #Psoriatic arthritis
    • #Trigeminal neuralgia
    • #Chronic migraine
  • 3 weeks ago
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Eye See…or Not.

So last month, remember when I mentioned my eyesight slowly worsening?

I finally got around to (read: stopped putting off. I’ve had two throacotomies and yet somehow am a big baby when it comes to having my eyes messed with) seeing the eye doctor this past Friday. But not really, because I actually walked out of the office after waiting for an hour in a waiting room with over 17 patients and a lovely smell of overly-used public restroom that was making my sister and I gag. The receptionist also decided to peace out before 5pm and I left without notifying anyone.

So in short, West Boca Eye Institute will no longer be my clinic of choice and my next appointment is on June 3rd at a new, presumably better place. 

Which is good because on Saturday night, for the first time, I was unable to drive myself to my destination because my sight was so poor and the lights were too bright.

I got half way to the local Barnes and Noble, flipped out in a mall parking lot, made it home, collapsed into a puddle of rage-filled tears, and officially can no longer drive at night.

I can deal with pain, needles every day, medications that make my face look like that of a chipmunk. I can even deal with the 4am prednisone cravings for brownies and my skin looking perpetually sunburnt,

but I cannot deal with autoimmune in my eyes or losing the independence of driving at night.

On that note, please keep your fingers crossed that whatever is going on with my vision is not uveitis or brain-related, and can be easily resolved with contact lenses.

Do any of you deal with blurry vision or related symptoms with your autoimmune or autoinflammatory diseases?

    • #Personal
    • #Chronic illness
    • #Chronic pain
    • #Uveitis
    • #Autoimmune
    • #Autoinflammatory
    • #Retinal migraines
    • #Chronic migraine
    • #RA
    • #JRA
    • #JIA
    • #Still's Disease
    • #Rheumatoid Arthritis
    • #SLE
    • #Lupus
    • #MCTD
    • #UCTD
    • #Eye sight
    • #Blurry vision
  • 4 weeks ago
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Live World Autoimmune Arthritis Day Chat in 30 Minutes!

The chat has been moved to the WAAD Facebook Page and will go up at 10am EST, as the live site has crashed! Come chat with me about all things self love and self esteem.

    • #Chronic illness
    • #Chronic pain
    • #Self esteem
    • #Self love
    • #Autoimmune
    • #Arthritis
    • #RA
    • #JRA
    • #JIA
    • #JA
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Lupus
    • #SLE
    • #Rheumatoid Arthritis
    • #Reactive Arthritis
    • #Psoriatic arthritis
    • #Sjogren's Syndrome
    • #WAAD
    • #Live chat
    • #Advocacy event
    • #Rheumatology
    • #Health
    • #Medicine
  • 1 month ago
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Come chat with me TOMORROW at 10am EST about self Esteem and Autoimmune Arthritis. Whether you have Lupus or IBD-related arthritis, let’s talk all things self love, self care, self esteem with disease, disability, scars, prednisone side effects, etc.
Come connect with other patients, share resources, ideas, and chat about a sensitive topic in a safe space!
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Come chat with me TOMORROW at 10am EST about self Esteem and Autoimmune Arthritis. Whether you have Lupus or IBD-related arthritis, let’s talk all things self love, self care, self esteem with disease, disability, scars, prednisone side effects, etc.

Come connect with other patients, share resources, ideas, and chat about a sensitive topic in a safe space!

    • #the amount of typos in this thing annoys me so much
    • #Chronic illness
    • #Chronic pain
    • #Autoimmune
    • #WAAD
    • #Rheumatology
    • #Medicine
    • #Health
    • #Arthritis
    • #RA
    • #JRA
    • #JIA
    • #sJIA
    • #JA
    • #Reactive Arthritis
    • #Rheumatoid Arthritis
    • #Lupus
    • #SLE
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Sjogren's syndrome
    • #Ankylosing Spondylitis
    • #Live chat
    • #Disability
    • #Autoinflammatory
    • #Dermatomyositis
  • 1 month ago
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Staying Positive With Chronic Disease


How do you stay so positive through your hard times?

Rebloggable by request after the question was posed here.

I started by redefining the word “positivity.” I used to think positivity meant obnoxious optimism and being happy all the time. I thought it meant not acknowledging the negative or being able to turn the negative off, so to speak. I thought it was something that some people just had, and either you had it or you didn’t— and I sure as hell didn’t.

image


I was wrong. Staying positive requires hard work! Positivity (at least for me and my situation) is about being healthy mentally, making healthy and proactive choices when dealing with terribly unhealthy physical circumstances. It’s about taking the waves as they come. It’s about stopping to smell all of the roses in the garden and remembering that even when there are no roses to be found, they will bloom again. It’s about noticing and appreciating little things— finding a handicapped parking spot on campus, a good hair day. 

It’s about hope.

I don’t smile all the time. I am not happy all the time. I don’t love my situation and I’d be lying if I said I wouldn’t jump at the chance to live a “normal” life. And I don’t believe in shoving that kind of optimism in the face of my readers or sugarcoating these diseases because it’s just not real when your disease(s) cause the kind of symptoms many of us experience (sometimes that kind of optimism/positivity is, quite frankly, insulting and invalidating). But this is my life and it’s going to pass me by even if I spend the next 10 years being miserable, so I choose to redefine it.

And for the record, you don’t need a life changing disease to make the choice to see the world through a fresh pair of eyes. 

I surround myself with people who lift me up and make me laugh. It took a really long time to put together a support network that was the right fit and healthy, but it is imperative. 


Humor (often strange and inappropriate) and laughter are the best medicine. I try to laugh at myself and my situation as often as possible. It doesn’t make it any less of an awful disease or hand of cards, but it makes it easier to deal with.

I have friends who look at it the same way. Having friends who can make inappropriate jokes about my situation— being able to laugh at things like shitting my pants in the grocery store or being called a sloth, or at a rash that makes me look like a lobster— helps me remember that everyone has something.

So I laugh about it. I also cry when I need to and do not let anyone invalidate my tears. I get depressed. I get sad. I get angry. Some days I wake up and don’t choose positivity; some days, I choose to wallow. But even when my circumstances keep me down, I hold tight to perspective that there will be kinder days, and I will pull myself above water and go smell the roses again, even if it takes a little while. And it’s okay to use a life jacket if you can’t get your head above on your own. Ask for help.


To me, that’s what positivity is. It’s a choice I make to keep a healthy perspective and be proactive, even when I am at my lowest point. It’s a lens I see the world through. It is a way of life.

    • #Ask
    • #Chronic illness
    • #Chronic pain
    • #Rheumatoid Arthritis
    • #Disability
    • #RA
    • #JRA
    • #JIA
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #SLE
    • #Lupus
    • #Arthritis
    • #Fibro
    • #Fibromyalgia
    • #Ankylosing Spondylitis
    • #Sjogren's
    • #CFS/ME
    • #Endometriosis
    • #IBD
    • #Crohn's
    • #Ulcerative colitis
    • #MS
    • #CRPS
    • #RSD
    • #Scleroderma
    • #Positivity
    • #Motivation
    • #Inspiration
  • 1 month ago
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Avatar A 21 year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.

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