Tuesday, April 28, 2015

Odd Moment of Clarity

I had the strangest moment of clarity a second ago, wherein I realized that IVs are not part of normal peoples' lives. That, in fact, getting an IV put in your vein is considered an unusual thing by the average person.


Well, that's odd. And it got me thinking...what else in a chronically ill person's life would be considered unusual? It's hard for me to say, since my normal life is, well, normal to me. But judging by other peoples' reactions, I would have to say that the following things are things that, although I may take them for granted, are not normal:

1. Technicolor fingers and toes: When you have Raynaud's phenomena, your fingers and toes turn white or blue when they get cold. Which can happen at any time. And then they turn lobster red if and when they warm up. Very patriotic, if you happen to be American or live in the UK.

2. Having more pill bottles than the average retirement home: 'nuff said. When I travel I practically need an extra suitcase for my medications. And by "practically" I mean "totally."

3. Being so used to having blood drawn/IVs put in that you can tell the phlebotomist which veins are the "good" ones to use. I'm always afraid they're going to think I'm a heroin user or something. Left arm. Yeah, that one. Good luck putting an IV in anywhere else, lady.

4. Fevers. People always look at me with concern when I say I have a fever. As if they aren't an everyday occurrence. Freaks.

5. Wheelchairs/canes/etc. While I'm not using them now, I have in the past, and undoubtedly will again in the future. I have actually been asked if I "actually need that cane" or if it was, I dunno, a fashion accessory? To my credit, I didn't wack the guy on the head. And this was right after a steroid infusion. If that's not self-control I don't know what is.

6. Pain. My boyfriend looks concerned if I make ouchie noises. The answer "it's ok, I'm just hurting" never seems to settle the issue. Go figure.

7. A complete inability to open jars. Apparently jars were made to be opened by human hands. And not by taking the jar and wacking it on the edge of the counter until the glass shatters. I have personally witnessed this miracle taking place, but I cannot explain it.

8. Chronic Fatigue. I told someone that I hadn't gone running because I was too tired, and he asked in genuine confusion (I swear I'm not making this up), "But what are you going to do? Fall asleep while you're running?" Ok, first of all: yes. Second of all...you reallllly don't get the idea of fatigue, buddy.

9. Chemo. Apparently most people aren't on chemo, haven't been on chemo, and really don't know what chemo is like. And they think we're the weird ones.

10. Brain Fog. If you've never arrived at work, opened your handbag, found a tomato and thought, "how the hell did that get in there?" you probably don't know what I'm talking about. You might even think I'm making the aforementioned scenario up. Please allow me to assure you that I am not. Lupus comes equipped with a fog machine for your brain. Everything gets very hazy very fast. Sure, everyone forgets a name now and then, but I've blanked on my sister's name, my significant other's name, etc. Scariest example? Forgetting how to drive a manual transmission while driving a car with, you guessed it, a manual transmission.


  1. Replies
    1. Thanks! There's so much about our lives that doesn't seem funny at the time, but from the outside it must seem pretty entertaining.

  2. You're very funny. And if you weren't, well, you and every other lupoid, including myself, would be weeping. My worst brain fog moment in recent history was arguing with a building security guard about the legal office that disappeared from the 24th floor of the building, demanding to see a telephone book to prove me right only to find that said office was in a building 6 blocks away, a building that I did not recognize yet had been in not 6 weeks prior. That and reporting my car stolen, and then remembering that I parked quite deliberately on a main street at quarter to the hour of towing but it not computing that I had only 15 minutes to do my thing, thus a tow and a big fat greek bill. Yet, on visiting emergently with my neuropsych, found that I had perfect memory scoring on extensive memory and functional tests . . . no dementia, no Alzheimers, no delerium or stupor or drug influenced state. nothing wrong, just the fog rolling in and out again. Wut th' fog???? Try explaining that to people.

    1. Yikes! You beat me for brain fog stories! The annoying thing for me is when they find nothing on the neurological tests and then tell me I'm just depressed or something. Sorry, doc, brain fog is a real thing, and it ain't just depression.