Ugh. I hate Lupus

Lupus eyes

After over six years of suffering from Lupus, it still surprises me.

And not in a good way.

Lupus is like a grab-bag door prize at a baby shower. You just never know what you’re gonna get.

Yesterday, I started having some pain and irritation on my right eye. When I finally looked in the mirror, I discovered a particularly painful rash over my eyelid.

Who gets a rash on their friggin’ eyelid?!

Well, apparently me.

It doesn’t itch like poison ivy. Instead, it hurts like a bitch.

And it isn’t like I can put hydrocortisone on it.

I feel like Wilhelmina Slater from Ugly Betty.

The good thing about a Lupus rash is it does go away after a day or so. Although ordinarily, I get them across my cheeks and over the bridge of my nose. I’ve never had one on my eyelid before. And between you, me and the lamp post, I don’t ever want to again.

In the meantime, reading – especially off a computer screen – is just a wee bit difficult since my eye is watering, I can’t stop blinking and the lid is drooping down like I suffered a stroke.

Plus it’s taking all my energy not to rub my eye and make it worse.

Ah, Lupus.

It’s the disease that keeps surprising you.

Oy vey.

Maybe it’s just as well.

The news is only making me angry. And I’m thinking emotional upheaval isn’t good for gals with Lupus.

So have a lovely Saturday, everybody.

And pray that this stupid rash clears up soon.

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10 thoughts on “Ugh. I hate Lupus

  • September 29, 2018 at 12:58 pm

    Hang in there Dianny!

  • September 29, 2018 at 1:23 pm

    I bet you still look beautiful with that rash.

  • September 29, 2018 at 1:27 pm

    You are still beautiful under that rash.

  • September 29, 2018 at 3:56 pm

    Not so fast. My daughter was diagnosed for 10 years with Lupus. She was slowly dying. Prior to the diagnosis, she had her knee fixed with cadre ligaments and screws. The knee never stopped hurting. Becoming very bad after 10 years she got into a good bone Dr. who observed the screws hadn’t healed over with several actually backing out. The Doc was puzzled. My daughter asked the material and was told they were titanium, but nickel coated. She blurted that she was allergic to Nickel. The day she had them removed, was like a veil had been removed from over her brain. Asking the Doc why they don’t tell patients of the nickel, he blow her off……. Please get your self tested for heavy metal poisoning.

    • September 29, 2018 at 5:08 pm

      Trust me. There was nothing fast about it. The symptoms presented in 2012. I endured a battery of tests for four years before they found the cause. In 2016, the speckle pattern test left absolutely no doubt. It was Lupus. I’m sorry your daughter went through that. There is nothing worse than not knowing what is wrong and feeling like you’re losing your mind because nobody can tell you what’s wrong. I know for me when the Lupus diagnosis was certain, I wept with relief. Not because Lupus is a relief in any way. But not knowing what was wrong with me was maddening. And finally having an answer was a gift. Plus I am blessed with an excellent rheumatologist. I just love her.

  • September 29, 2018 at 7:31 pm

    Sorry, Dianny- I remember how terrible it was for you trying to figure what’s wrong. I pray the medication combo is always right on, and I hope your eye is doing much better today.

  • September 29, 2018 at 7:36 pm

    We’re with you Dianny!

  • September 29, 2018 at 7:53 pm

    You’re an inspiration.

  • September 30, 2018 at 12:59 am

    Sorry to hear you’re having such a rough time Dianny. Hang in there.

    Hugs to you.

  • September 30, 2018 at 7:43 am

    Hopefully knowing how many of us are out there thinking of and praying for you makes your situation a little easier to bear. Keep fighting

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