More like idiot-pathic
The Merriam-Webster Dictionary
https://www.merriam-webster.com/dictionary/idiopathic
Urban Dictionary
https://www.urbandictionary.com/define.php?term=idiopathic
If I sat here and thought long and hard, I’m sure I could come up with several more frustrating things than going to the doctor and hearing that this thing that is making you miserable is “idiopathic”. It would take some time, but I’m creative and pessimistic so I’m pretty sure I could come up with something.
For me, it started at a work assignment. I was sitting there, doing my thing when my eye started to feel weird. My lower lid started to feel…different. I ignored it, being the good professional I am, and continued doing my thing. When I got to my car, I looked in the mirror and discovered my eye1 was swollen. “That’s weird,” I thought, then I moved on with my life because it wasn’t a big deal. It was swollen shut or anything. It only happened to the one eye. I wasn’t having difficulty breathing. I assumed it was an allergic reaction to a dog that was in the vicinity.
It wasn’t.
Well, it probably wasn’t.
Over the course of the next several months, this happened again. A few more times.2
One of those times was particularly memorable as it was during another work assignment. The first episode was subtle enough that the people around me MAY not have noticed anything strange going on.
That cannot be said for this other episode. I felt that weird not quite tingling feeling of fluid building up in my eyelids that accompanied each of these episodes. I felt it, and shortly thereafter my coworker was asking if I was okay. My client too, if I remember correctly. So yeah, people noticed. I had to excuse myself a little early from the work assignment in order to run to the nearest convenience store, buy Benadryl, and then take said Benadryl.
Luckily, for most of these instances, Benadryl did its thing and made the swelling go away. But I had to catch it early. If the swelling got going and for whatever reason I didn’t take Benadryl, I ended up with one or two (it varied) very puffy eyes. I remember one evening my parents walked in to find me lying on the bed with a warm compress over each eye. When I removed the compresses they both tried to stifle their laughter at the sight of me peering back at them through eyelids that resembled a nectarine. Don’t worry, I was able to see the humor in it as well. It is kind of hard to look in a mirror and see your face so weirdly distorted and not giggle4. I think that may have been when they recommended I go see the doctor about this.
I went to an allergy doctor, and he diagnosed me with Chronic Idiopathic Urticaria (CIU). If you are a smarty-pants and know what urticaria is, you might be surprised that I would receive a diagnosis including urticaria. Because urticaria means hives. I didn’t have any hives. I had never had hives accompany my eyes swelling. No hives. Nevertheless, he explained that sometimes CIU presents as swelling in the face without the hives. The prescribed treatment was basically what I had been doing–Benadryl and warm compresses. The prognosis was as vague as the diagnosis. “Sometimes this happens a few times and then goes away. Sometimes it happens consistently for a few years then goes away. Sometimes it doesn’t go away.”
That often accompanies a diagnosis with “idiopathic” in the name. Don’t know where it came from. Don’t know what it’s going to do. Have fun!
My particular brand of idiopathy ended up being that this happened a few more times, totalling less than a dozen instances, then went away.
Or so I thought.
*cue dramatic scary movie music*
Cut to about one year later. I went to the dermatologist with what turned out to be perioral dermatitis. Basically, I had some deep, painful zits around my mouth and nose. They really hurt. And they were unsightly. And I wanted them to go away. He prescribed an oral and a topical antibiotic. They were effective at treating the perioral dermatitis.
They may have also triggered what would become about a year and a half of CIU–with hives this time. Mostly hives this time. Not much swelling. Although once my eyes and lips started to swell and I ended up in the ER because I didn’t think it particularly wise to go to bed when my lips were swelling because that can be a precursor to your throat swelling and no one wants to wake up in anaphylaxis. Or not wake up, as the more dreadful case may be. So I went to the ER to be given the most expensive Benadryl of my life and then sent on my way a couple of hours later when the swelling didn’t get any worse and I didn’t die. Boy, did I feel silly5.
No, most episodes did not involve facial swelling. Unless you count having so many hives that they meld into one hive on your scalp, neck, and forehead, leaving that entire area a little bit squishy. I did have that kind of facial swelling.
I had hives. Head to freakin’ toe. Except, inexplicably, on my arms. For reasons known only to my kooky immune system, my arms were spared the suffering. EVERYTHING ELSE, however, was fair game. These hives lasted weeks on end. Itchy, itchy hives. Benadryl didn’t help. Other allergy medications didn’t help, despite being on a regiment of enough allergy medication to put a grizzly bear into hibernation. This other drug, the name of which I don’t remember, that was specifically for CIU didn’t help. It made me temporarily anemic. Oatmeal baths6 helped a little for the duration of the bath. The only thing that made them go away was corticosteroids. Good ol’ Prednisone. As many of you readers may be aware, Prednisone is a wonderful drug and it is also terrible. It is not a drug you want to be on long-term if you don’t have to. It is an immune suppressing drug with side effects ranging from agitation and mood swings to increased appetite, weight gain, and abnormal fat deposits on the face, neck, and trunk. The whole immune suppressing, while being the main point of taking Prednisone, can cause other issues too.
Oh, and the antibiotics may not have triggered CIU.
That’s the point of the “idiopathic” diagnosis. No one knows what caused it. I changed to fragrance-free/for sensitive skin laundry detergents, shampoos, soaps, and lotions. I did elimination diets to rule out food allergies. We thoroughly cleaned the house, including having the carpets and air vents professionally cleaned. I avoided helping with my grandparent’s estate stuff (because that was also a variable around the time of the hives appearing) in case it was some sort of mold or ancient breed of dust mite. We considered seasonal factors. We tried to think of any and every variable that could account for my itchy misery and came up empty-handed. We still don’t know the cause. It was probably some autoimmune weirdness, which is why my theme song during that time was “Don’t Let Me Get Me” by Pink.
“…I’m a hazard to myself
Don’t let me get me
I’m my own worst enemy…”
Here’s where I end with the moral of the story. I actually have one this time.
Sometimes doctors have the answers and can help your body stop doing whatever weird, unpleasant shenanigans it has gotten itself into. Also, sometimes doctors don’t have the answers and your body does stuff against your will. The end.
(In case you were wondering, my CIU is now under control thanks to a lovely regular injection of Xolair. Or maybe because my body just decided to stop doing that anymore. We’ll never know!)
Footnotes
1 I know it is common English verbiage to say “my eye was swollen”. Yet every time I talk about this I feel the need to clarify that my eyeball was fine. The orb of goo that contains the seeing apparatus remained it’s normal size. It was the area surrounding my eyeball that got swollen. I’m pretty sure most people assume when they hear that phrase, but I’m always weirdly unsure about it. So even though I will continue to use the phrase “eye swollen”, just know that I mean my eyelids and such that were swelling. My eyeballs were fine.
2 “Several”. “A few”. Yes, I know I’m being rather vague. My memory isn’t perfect. Sue me.3
3 I feel like saying “sue me” really dates me. Oh well. Sue me.
4 If it had been painful, I may not have been so cavalier about it all. It wasn’t painful though. It was mildly uncomfortable at worst. And very bizarre. And annoying.
5 I felt only slightly less silly at going to the emergency room for swollen eyes and lips (lips swollen enough that anyone who knew me well would notice it, but not so swollen that the doctor didn’t have to ask me if my lips were bigger than normal) when the ER docs told me that it’s generally a good idea to go to the ER or Urgent Care when your face is swelling for unknown reasons. Because, you know, the face is connected to the breathing tube and you generally want to keep that nicely un-swollen.
6 I remember getting oatmeal baths when I was little and had the chicken pox. They’re a good tool to have for itchiness. You put rolled oats in a sock and tie it shut. Then put the oatmeal sock in the bathtub. Enjoy the soothing goodness of oatmeal juice on your skin.
Emotional Support Sisters 
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