The Lupus Diaries


I hate this internalized ableism; the feeling that I’m not really ill, I’m not disabled, I am making this up. I am just pretending to be ill to flee from my responsibilities. 

I have a genetic defect and I know that it is not my fault I feel this way. but I still feel guilty, I feel that I should do more, be more, produce more. 

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(Source: everlytrue)

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"There’s a couple of stages of having a chronic disease; there’s the being sick - like suddenly you’re sick and you don’t know what’s wrong. And that can be super terrifying depending on how severe your symptoms are. Then there’s the being diagnosed part which comes along with this word chronic, which inside of it hiding there is the word incurable - which no one says out loud but which is the worst word. It means, not only has your life changed, your life has changed irrevocably."

-Hank Green on Living with a Chronic Disease (via doingthediagnosis)
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(Source: a-girl-and-her-colitis)

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It’s cute how the only illness healthy people think exists in the world is cancer.

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having a disabling illness in your late teens/early twenties is kind of like watching everyone else get the new software update except it turns out the update isn’t compatible with your hardware


Right? Fits perfectly right now

(Source: broadstreetvegan)

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PillPack looks like a godsend for anyone with consistent medications who are sick of filling their pillpot every week (probably less so for folks whose meds are in flux due to treatment trials); anecdotally, it seems that some regular pharmacies provide a similar service, so definitely check with yours!

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When you mention your chronic fatigue and the person you’re talking to responds with,"Oh! I’m tired all the time too!"


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(Source: spooniestrong)

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The Pillow Fort - making chronic illness suck less


The Pillow Fort - making chronic illness suck less

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One of the hardest things about chronic illness is the waiting. Waiting for the medication to kick in. Waiting for the prescriptions to be filled. Waiting for paperwork to clear. Waiting for the next doctor’s appointment. Waiting to please just get better already or to finally keel over dead.

Over the years I’ve gotten used to the pain, but the waiting never gets easier.


-(via the-girl-with-the-purple-cane)
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(Source: desenharts)

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Wednesday, April 9

Okay, that was fast.  I was perfectly healthy on Tuesday morning (or at least, as healthy as a person with lupus can be) and then suddenly, BAM, I came down with something.  I still don’t quite know what it is, but I do know that I feel like shit.  I’m almost positive I had a fever yesterday, but I don’t have a thermometer in the dorm.  I had chills and some soreness that is probably mostly from the intense exercise that I had done earlier in the day and the previous day.  Today I woke up feeling worse than yesterday.  The muscle soreness was unbearable.  I could barely walk, much less make it up the stairs without wincing.  My calves are still crying, as well as my upper back and abdomen.  I’ve taken all the naproxen I can, but it really doesn’t feel like it’s doing anything.  Hopefully it gets better soon!  I can’t afford to get behind in my classes!

Putting Lupus in Permanent Remission


Exciting news! Northwestern Medicine Scientists have successfully tested a nontoxic therapy that suppresses Lupus in blood samples of people with the autoimmune disease.

"The peptides have the potential to work like a vaccine in the human body, to boost the regulatory immune system of those with Lupus, fight autoimmune antibodies and keep the disease in remission,” said Syamal Datta, M.D., senior author of the study.

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