thoughts on prednisone, moon face, Ashley Judd, & “if you can’t say anything nice, don’t say anything at all”

I’ve been on prednisone for a LONG time now, y’all. Way too long, in fact.

When I first fell ill with Celiac Disease in the fall of 2012, symptoms of my systemic autoimmune disease soon followed – and I soon began receiving frequent steroid injections as well as having to take courses of oral prednisone intermittently every few weeks.

By the end of 2014, I was on the pred continually – and the dose kept increasing, as did my diagnosis list. And today? Both are crazy big.

Lord knows we’ve tried to bring it down – and are still working on it. But it’s tough.

Why?

Because, while, yes, the prednisone causes some hella horrific side effects – osteoporosis, my stress fractures, massive weight gain that is so difficult to lose, diabetes, immunosuppression – it also keeps me walking and keeps me alive.

So, what to do?

It’s just hard.

And, day before yesterday, when I logged onto Twitter and saw this?

Prednisone trending on Twitter. Odd to say the least.

I had to investigate.

And what I found was that Ashley Judd had made an appearance campaigning for Elizabeth Warren, looking beautiful as always, but her face was a bit swollen as she has a – slight – case of the characteristic moon face associated with prednisone use. (She has taken it intermittently for years for autoimmune disease,)

Anyway, many derelicts felt free to take potshots at her appearance – prompting these sorts of responses from my fellow spoonies:

I have worked hard to lose weight while on the pred (no easy task) – and continue to do so, having already lost over 40 lbs – but the moon face stays no matter what a person does while therapy continues.

As it happens, it is a VERY sensitive subject for me – more so than changes with my body actually – and people can be SO cruel, whether intentionally or unintentionally.

me before and during long-term prednisone therapy.

In recent months, I have experienced:

  • The owner of our local gas station FLIPPING OUT after not seeing me for awhile, asking repeatedly why my face was so swollen, not processing what I was telling him about my meds, telling me I should go to the doctor for the swelling, and embarrassing the hell out of me. I wanted to crawl in a hole and cry.
  • A brand new NURSE who just could not be made to understand why my moon face was so red – from the pred – and she just would not stop staring and asking until I got so upset I raised my voice to her. I never do that sort of thing. Again, I was so damn upset and embarrassed that I wanted to crawl in a hole and cry.
  • A family member who felt free to stare and greet me by loudly exclaiming how puffy I am – as if I don’t know. Oh. My. Word.
  • Facial recognition technology that didn’t recognize me from my Driver’s License photo. Really.

I. Hate. This.

But you know what I hate more?

Being bed bound.

Screaming in pain.

DYING.

Unfortunately, my medical team and I have not found a way to get by without the pred just yet – and I need it to keep me walking and, umm, ALIVE – so moon face it is.

However, where I can’t control the moon face, people CAN control their mouths – and stares. When did it become acceptable to treat your fellow humans this way?

It. Is. Devastating.

Sooooo. . . again, I remind everyone of a few lessons we ALL learned in kindergarten. . .

  • People look different for all kinds of reasons and that’s okay.
  • It’s not nice to stare at people because they look different.
  • If you don’t have anything nice to say, don’t say anything at all.

 

Be well, everybody. Take care of yourselves and each other.

Grace and Blessings.

 

2 Comments

  1. As someone who struggles (well, who doesn’t) with incredibly painful body shame, I heard this phrase recently that resonated with me as I try to inhabit this body I have… “your body is the least interesting thing about you”. Wowza. Your body is the least interesting thing about you. And. Ramsay girls can fight. So let me know if you need me to come explain to someone. I got the body to take some little b@&ches out. 😇😅💕

    Liked by 1 person

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