Tuesday, May 28, 2013

Keeping it Real: Every-Day Lupus

   Those of us with chronic illnesses generally don't like to talk about them on a daily basis. It's bad enough to get the looks from everyone when you park in a handicapped space, can't eat solid food or have to walk with a cane. Why bring more attention to the fact we're sick? That plus, of course, we know that nobody wants to hear about every ache, pain, rash, etc. Hell, we don't want to hear about such things, and we're the ones experiencing them!
  Understandably, one of the consequences of keeping disease-related every-day problems quiet is that most people generally only hear about the crises: the trips to the ER, the new, potentially life-threatening diagnoses, the almost-murdered specialists, etc.  This, I recently realized, may make Lupus and related diseases look like exciting, fast-paced illnesses that turn the patient's life into a scary-but-cool episode of ER. I'm here to tell you that nothing could be further from the truth. Life with lupus can be scary, but it's anything but cool and exciting. Enter the following illustrative examples:


   Lupus patients are always tired. Always. The only exception to this rule is the brief period after we've been given a big dose of corticosteroids. Then we're fatigued and yet, and I don't know how this is possible, still feel like a chipmunk on crack. Any time someone has said "You look better than I expected" (or some variation on that theme) it has been either during or directly after a massive dose of steroids. We're talking about thousands of milligrams of the stuff. The rest of the time we are tired and, if given half a chance, will sleep. This puts a damper on that whole "let's go out and party" idea. My idea of a party these days is my bed, a good book and my best friends, Ben and Jerry. 

 Brain Fog: 

I wish I were Making  This Scenario Up.
   If you've never arrived at work to find a tomato in your handbag, then you probably don't know what brain fog is, or why it would make life boring. Brain fog, scientifically speaking, is what happens when your immune system goes bat-@$#* crazy and tries to kill you. It's a mix of medication side-effects, running a constant fever, having your immune system attack your brain, etc. Unfortunately, this means that even if you had the energy to go party, you wouldn't remember it until the next day. I will admit one exception to how brain fog makes life boring: every time I get a package in the mail it's like Christmas, because I generally have absolutely no idea what I've ordered. I have developed a theory that Mr. Amazon is Santa Clause's little-known associate. He certainly sends me a lot of things I don't remember having ordered.

 Lupus Chic:

Hobo in Pink avec le Chat Noir.

   Most lupus patients are diagnosed when they are young, and most of us are women. I think I can say without being unreasonable that most of us care somewhat about our appearance... after all, who doesn’t? So that distinctive lupus rash look, the one where our face looks like our skin has decided to showcase the “Best of the Teenage Acne Years” is not so fun. Nor is having your hair fall out. Equally embarrassing are the bruises that we have to explain to complete strangers who think we’re abused. Not exactly Paris Chic…more like Drunken Hobo Chic. Behind our carefully made-up faces (if we have the energy to make them up, which is not a given) lies a pale, bruised and non-healthy-looking person.

            Equally difficult are wardrobe decisions. Lupus patients pick our clothing for the day based on simple criteria: 1) Can I physically put on this item of clothing? If our hands are stiff and swollen, buttons are out. 2) Will this outfit reduce me to tears? Heels + lupus flare = not so much. 3) Does this outfit protect me from the sun, or do I have to spray myself with an inch of sunblock before opening the window? I’ve never followed High Fashion all that closely, but I’m guessing these are not the usual criteria used for picking outfits. I tend to wear a lot of dresses in the summer, as they have no buttons, don't hurt to wear, and they don't resemble the Hobo Chic quite as much as sweatpants would. 

Bottom Line:

      There are endless reasons for why living with a chronic illness is dull, grinding and unexciting. But I won't bore you with them because they are just that: boring. Every day is a mix of pain and tedium. So forget about ER, House, or any other "Medical" TV show. The reality is nowhere near that exciting. (And, sadly, there is a lack of mysteriously good-looking celebrity doctors at all of the hospitals I've visited. TV lies, I tell you, it lies.) Now, if you'll excuse me, I'm going to go sleep.


  1. Hey Sam! May I share your blog on FaceBook? I'd like to use it as a "Lupus Fact of the Day"!

    1. Absolutely. You are always welcome to share any of my posts with anyone you like!

  2. Hobo in pink avec la chat noir. Made me laugh out loud!

  3. Love reading everything you write Sam! As always, you hit the nail on the head. I love the part about forgetting what you ordered, and it being like Christmas when you get something. That happened to me just today! lol

    1. If only I didn't have to pay for the orders it would be perfect!

  4. I'm sorry about the absence of adorable doctors--all the better if they manage to find a miracle cure by the end of the episode. If you get the opportunity, hire a new script writer. But you should also realize that from the perspective of someone old enough to be your mother, someone who is starting to creak and wrinkle without needing any reason for it, you still look young and lovely to me. (keep in touch, because when you're 50ish, I'll be 70ish, so I'll still think the same thing.)