Okay, if you have never had Shingles (not the house kind, but the kind your soul lives in - the body kind) , consider yourself a lucky, lucky, lucky ducky. This is actually one condition I would never wish on my worst enemy. The other one is Labyrinthitis, a lovely inner ear infection which makes you lose your balance and feel like you just got off a carnival ride 24/7, which I also had the pleasure of suffering through once. But the Shingles, I've had them multiple times. This time, I nearly got into it with my doctor about it.
I am currently 42 years old. I got my first case of Shingles when I was in my late 20's. I had thought I was age 28, but the fight with my doctor the other day proved me 4 months off. My bad.
When I got them the first time, I knew nothing about them. Never heard of them, didn't know what the heck they were. I thought that I had been bitten by a strange poisonous spider or something. I had been having terrible stabbing pains in the back of my head. I'd just be sitting there talking to you and all of a sudden, I'd double over and grab the back of my head and not be able to do anything but freak the other person out because I couldn't explain my sudden pains. It felt as though someone was stabbing me in the back of the head with a butcher knife.
I went to the dermatologist because I had three spots in that area hidden under my hair (they felt like large mosquito bites). I told her about the pains, she looked at the "bites" and then she decided to take a scrape and test it. Sure enough, she was surprised to find that I had Shingles. Then I got the full smack of them. Oh... my... lord. Like I said, you don't wish these things on your worst enemy. I broke out all over the right side of my face with blister patches which itched to high heaven, oozed, crusted, then turned a bright reddish purple, and were accompanied by a combination of dull pounding and searing pain.
You see, Shingles is an infection of your nerve endings, making your skin feel pin-prickled and so sensitive I couldn't even have clothing touching it the first time. Quite a nasty assault on the body. Pair all of this with horrible fatigue and then post-herpetic neuralgia (which can last from months to a year) which is pain that you can't see, but feels like someone is punching you as hard as they can and/or you just got hit by a Mack truck and you will get my drift. They suck. And unless the blisters are present (for a short period during the attack), you can't see them, so people have no idea what you're going through.
Here is what the rash looks like (not the horrible purple stage, which thankfully I didn't get to this time).
They attack one half of your body because they follow nerve endings, although I have had a few tiny patches do an occasional jump to the other side and they're nearly always in a quadrant of your body (waist, face, etc.). It is a basically a form of what you are familiar with in childhood - Chicken Pox. It's a form of Herpes (gasp!) Zoster that stays dormant in your body until it erupts (usually after age 50) if you are unlucky enough to get it. You're only supposed to get it once. Bullsheets. I have probably had them once a year since the first time. Luckily, all subsequent cases since the first one were mild enough to be masked as something more akin to Poison Ivy. I've learned over time to tolerate them without medicine, but the pains I experience beforehand (various places on the body) are a dead giveaway.
Now, this time I knew it was different. The rash was more widespread, then pain more severe, I could feel the fatigue setting in. I could tell this was no ordinary case. I called the dermatologist. She was out. It was Friday and I'd be damned if I was going to suffer through these all weekend, so I insisted on seeing someone. Her physician's assistant was booked up. They suggested my regular doctor, who could see me an hour away since her PA (much closer) was also booked up today. I leapt at the chance and went.
I told her "I know these are Shingles, without a doubt." She looked me square in the eye and said, "I don't think that's what they are. I think it might be some kind of dermatitis, but not Shingles." I kept my blood from boiling. I said, "I've had them before and I know what they are. It should be in my records, I came here to Dr. Schmidt and she diagnosed me." She replied, "We have no record of that here. How long ago was it?" I told her I was 28 when I got them. She said, "Well, that's impossible then because Dr. Schmidt didn't come here until a year after that."
At this point, I was getting upset and frustrated. And I love my doctor! I was getting pissed. The doctor didn't believe me and they couldn't find my records. I said, "Well, I know I came here. I know I saw Dr. Schmidt. And I know she did a scrape and diagnosed me with Shingles and gave me medicine for it, so you must have it in your records somewhere around that time." She replied, "She wouldn't have done a scrape here." I was about to cry.
As I showed her my rash, all clearly visible without disrobing, she demanded suddenly, "Take off your shirt." I told her they were just where I showed her and she demanded again, "Take off your shirt!" I was sitting in the dang chair where you get your blood pressure taken, not even on the examining table behind the door and there was no curtain to hide me if a nurse suddenly opened the door. She had to demand a third time, "I said, take off your shirt," before I finally sheepishly obliged. I think she wanted me to prove that it wasn't Poison Ivy and that I wasn't lying about it not being other places on my body. She hurried out of the office, disbelieving me, and I was clearly able to hear the conversations between her and the other staff members trying to catch me in my "lie." I was fuming. But I had to be patient and persist because I knew I had to get the medicine.
Finally, she came back with what appeared to be an old faxed report and said, "Well, we finally found the record from December of 1999." She said it as though I had been horribly mistaken, even though it was only four months after I turned 29 (not 28 years old as I had stated) and said that Dr. Schmidt would have just gotten there and yes, it did say that they did a scrape at the office. Well, huh. "I told you so!" I shot the words and a pointed finger at her.
THEN, she called me up onto the examining table to do a scrape, which is a rather unpleasant thing in itself. They literally take a blade and scrape your skin raw to get cells to test. THEN, they scrape it as hard as they can with those long Q-tips. It hurt. I was insulted. And I didn't even get an, "I'm sorry," about me being right and her being wrong.
I got my meds even without the definitive test results (which I was supposed to receive today and didn't), so I don't care. At least I'm being treated and it's better than it could be. I just feel drained. I hope I don't get the post-herpetic neuralgia this time. The first time, I would have to wake up in the morning, take the strongest pain pills they could give me and go back to bed for four hours until they really kicked in and I could move my body enough to get out of bed and shower and then put in a half-day of selling caskets to funeral home directors.
I felt miserable and half-dead and my boss said, "Well, you don't look or seem sick," because I looked okay and he had no experience with Shingles, so no sympathy there. Oh well. I've learned it's a personal battle and I just have to make do. I worry that people might think I'm lazy because they can't "see" the illness. People with things like fibromyalgia will know what I'm talking about here.
It also scares me a little, because one of the reasons people get frequent bouts of Shingles is because they have an auto-immune disease or cancer. I've not been diagnosed with anything, but who knows what is lurking in my body and has yet to rear its ugly head? Doctors miss so much. Heck, I had to convince them I have Shingles!
As for the stigma that comes with them, that's another story. People are afraid of things they know little about. I found that Shingles can be passed to others who have not had Chicken Pox in childhood, for instance, when the blisters are in the popping/crusting stage. And to look at the rash on a person in that stage of Shingles is a bit freaky. The first time I got them, I was still in bar-crusing mode, so people would literally stay on the other side of the bar from me so the wind wouldn't blow them on them or something (ridiculous) - either that, or they wanted to go get their grandkids so I could give them the Chicken Pox so they could get it over with.
So when I was debating whether or not to go to church this past Sunday (the rash was barely visible by then thanks to the meds), I was prepared to tell people I couldn't be hugged due to my Shingles. My husband wouldn't let me do it! He said it would freak people out. I know when they are contagious and I know what to do. I'm not stupid. I did left-facing hugs only even though I was not in contagious stage and to appease my husband, I didn't mention it to people, which made me feel like I had something to hide. You know me, I hide little! Look at the picture I posted of Friday's rash! No makeup, hair pushed behind the ears. Not many people do that. Pretty much just me and my new friend Chris Dean, who will post anything funny about her own traumas, like me ;0) Love ya, girl!
Well, life goes on and the chores of the household beckon. So I must get outta this chair and do something. Hope you are all Shingle free for all of your lives! But if not, you can surely tell me all about it and I will sympathize!