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Shingles

WE’VE BEEN SHINGLED!

Shingles FaceWeek two (no photo taken during week one, when his face was completely disfigured and swollen beyond recognition!)

My husband has shingles–bad! If you’ve never experienced shingles, you can learn all you ever wanted to know about this revolting illness by doing a quick Internet search. Basically, you can get shingles if you’ve ever had the chicken pox. There is a vaccine against shingles, but it is generally restricted to people over 50, and most insurance companies will balk unless you are over 60. Those of us who are under 50 who have had chicken pox are left to play shingles roulette. And believe me, you do NOT want shingles!

Some people get a mild case of it. Shingles happens on only one side of the body. Most people (I read about 60%) get the shingles rash near their waist. Some are unlucky enough to get shingles on one side of their face, like my husband. When this happens the eye is at risk. I know of someone who had minimal damage to the eye and another person who lost eyesight completely in the affected eye. My husband is at risk for eye damage but he is on anti-viral medication so hopefully he will be just fine. He had the shingles rash on his head, his forehead, his cheeks, his nose, his eye and his lips. The rash was inside his nose, inside his mouth, and in his throat.

Now let me explain what I mean by the shingles “rash”. Oh this isn’t a cute little strawberry patch. The shingles rash starts out red and painful. There can be a sharp jabbing intermittent pain like being shocked. There can be numbness and creepy sensations. Then the blisters form. Oh, the blisters! At this point it is clear that something is seriously messed up and the shingles diagnoses is obvious. Even people who have little awareness of shingles will probably say, “Is this shingles? I think this is shingles…” And then the adventure begins.

The blisters will eventually erupt. They will ooze. There can be a great deal of swelling of the face when the blisters are active. When my husband was in this phase he said, “I feel like the Elephant Man”. I was thinking more like the villains from the Indiana Jones movie, when their faces were melting in the fire. His face looked like it was divided neatly in half. If he showed me his profile, he looked completely normal on the left side. The right side was a different story. His face looked like it was made of wax, and it was melting. He was two-faced. He mused that shingles may have inspired the Dr. Jekyll and Mr. Hyde story. I thought of the Batman villain Two-face. To cheer him up I decorated his food plates with “shingle faces” on them — a lopsided mouth and eyes.

Beyond the grotesque appearance and the oozing, there’s the pain, oh the pain! He also vomited impressively, frequently, and with a noise that reminded me of a cow baying while in heat. This lasted about a day and a half. This was when I was the most worried about him because I feared that he would become dehydrated, a serious emergency condition that would require hospitalization.

He has a history of dehydrating easily so I was rather panicked–on the inside. Outside, I was in my cool, calm, and collected nurse mode. I looked up ways to make homemade electrolyte drinks. I kept them coming. I was a pushy bartender. I kept the drinks flowing and I made sure that he kept drinking.

At one point he groggily announced that he hadn’t peed in two hours. I was horrified when he said this! He complained that his stomach was a hard ball and that he was too full to drink another drop. I insisted. He alternated between sipping water and the electrolyte drink. We were going to get ahead of the dehydrating effects from the bouts of vomiting!

The electrolyte drink:

  • orange juice I squeezed from a small fresh orange
  • lemon juice we had on hand in the fridge
  • a few shakes of salt
  • a serving of frozen mixed fruit; melons, pineapples and strawberries that I had partially thawed and smashed with a potato masher then strained the juice into the glass
  • plenty of ice
  • the all-important straw

I was proud of myself for coming up with that resourceful recipe. I had looked on the Internet for ideas and I had to modify the recipe to match what I had on hand. It ended up fairly close to what I saw and I was confident that it would work.

We survived that horrible night and the next day without any need for hospitalization. He not only pulled through it, but he also managed to vomit into the toilet bowl each and every time. Bravo, husband! I thought that I’d be doing clean-up duty and I’m ever so grateful that there was no need for that!

He perked up after he made it through the vomiting and fever phase, but it was short-lived. Next, the “crusting” of the blisters began and fatigue set in. He slept most of the day. He was depressed. He was agitated. By this point I was exhausted from playing nurse and I was getting cranky. Marriages are tested during times like these. Thank God I hadn’t given him a bell to ring!

Fortunately I had the foresight to set up a couple of self-care stations. The first station is on the kitchen table, where I leave a light on at all times. My daughter had made a chart for tracking the times he took his medications.

Medicine Station:

  • a chart to track the time he took his medicine
  • a pencil
  • all of his medicines
  • the information that came with the prescriptions

This was very helpful when he was getting up in the night to take medicine. I knew that he was barely lucid so I’d wake up when I heard him shuffling around in the kitchen to check on him. I’d ask him how he was feeling and he’d give me a thumbs-up. Then he’d go back to bed.

But one time I caught him going for Sudafed, which was outside of his safe medical station and inside the pantry. He’d also had a sinus infection, which is probably how he got shingles (his immune system was already low with an active infection in the very location where the shingles took over) so he had it into his head that the pain would be helped by taking something for his sinuses. I talked him out of taking the Sudafed because I knew it wasn’t wise to add that to his cocktail without any thought whatsoever! After he got through the first week he was able to make rational decisions and stay on track with his medications without me looking over his shoulder.

By the way, shingles can cause blood pressure to run high. Those who already have issues with high blood pressure should monitor it more closely and might have to take more medicine to keep it down to safe levels. The elevated blood pressure can linger long after the shingles pass too, so it’s important to keep an eye on it. Even people who previously had no history of high blood pressure can develop high blood pressure due to shingles.

The second station was in the bathroom. This was probably more important than the medicine station because I shouldn’t be handling anything that he uses on his blisters. It’s rare to get shingles from someone who has shingles, but it’s possible to get chicken pox from direct contact with the blisters of someone who has shingles. The kids have all been vaccinated against chicken pox and I had had chicken pox as a child. Nonetheless, it is also possible to catch chicken pox a second time even though most people don’t think that’s possible. It’s rare, but it does happen, and it did happen to my sister in law. So, anyway, it’s best not to handle the tissues, cloths, and mess from shingles care.

Self-Care Station:

3-4 small clean plastic food storage containers without lids for the following:

  • a clean washcloth
  • oatmeal bath (can apply to skin without taking a bath)
  • ointment such as bacitracin and Vaseline

Also:

  • a box of tissues
  • a large trash can
  • bottle of calamine lotion

I’ve been sleeping on the loveseat in the living room. I can hear him when he gets up to take medicine so this has worked out well. He has taken over the whole bed for his shingles adventure. On my half of the bed rests a wooden laptop desk. I serve his snacks and meals on that desk. Now that he’s feeling better he has his laptop on it. He is still spending most of his time in bed, during Phase 3 of shingles, but I’m not doing much hospitality service now that he can get up and eat his meals in the kitchen.

Shingles Phase 1 (the “warning” phase):

Strange sensations are felt where the shingles rash will eventually appear. These sensations might include:

  • stabbing nerve pain
  • numbness
  • itchy, uncomfortable, odd tingling
  • nothing at all (rare)

Shingles Phase 2 (hell):

These symptoms may or may not occur. A lot of this depends on where the shingles are located and whether or not the shingles is mild, moderate, or severe.

  • vomiting
  • vomiting as an extreme sport
  • pain
  • PAIN
  • numbness
  • monkey-drool numbness (face)
  • swelling
  • Elephant Man swelling (face)
  • eye swollen
  • eye swollen shut
  • fever
  • loopiness

Shingles Phase 3 (“crusting” and recovery):

When the blisters crust over they will dry out. The scabs/crusts will fall off. Shingles are gone at this point and the patient is not likely to be contagious anymore. These symptoms may or may not occur.

  • looking like an extra for The Walking Dead (crusts are on face)
  • burn-like appearance to skin
  • pain
  • PAIN
  • itching
  • tingling
  • electric shock sensations
  • fatigue
  • extreme fatigue
  • skin still swollen
  • numbness
  • biting tongue or cheek due to numbness/swelling (face)
  • depression
  • venturing outside cues the soundtrack to 2001 A Space Odyssey

I know a lot more about shingles than I ever wanted to know. I asked a lot of questions when we went to the clinic. I read about shingles on hospital websites, patient information sites, and more. I read about shingles on alternative medicine sites. I read about shingles from personal comments, forums, and blogs. All of this helped me come up with ideas that worked for our situation. I’m grateful for the generosity of sharing and this blog article is my way of “paying it forward”.

My husband is kicking this shingles thing. He’s going to attempt to go to work on Monday. We’ll find out Tuesday if his eye was damaged by shingles. We’ll also have a better idea of how he’s doing in general.  He’s still in a recuperating phase so I’m still sleeping on the loveseat in the living room. I’d say it’s better than staying in a bad hotel, but I’ll be glad to have my side of the bed back!

Overall, I’m grateful that this shingles adventure wasn’t worse. I’m proud of how we navigated this crisis. We’re not strangers to adversity, but every time one of life’s surprises takes the wind out of our sails it’s always an opportunity to rise to the challenge–or not. We shingled in the new year. With this start to 2015 it can only get better from here, right?

***UPDATE 1/26/2015: Well, it’s been a rough recovery and it’s not over yet. He’s had severe “crawling” sensations in his face. It feels like worms are under his skin and it drives him CRAZY! When this happens in the middle of the night he’s extremely agitated, grabbing at his face, pacing, etc… It’s scary to witness because it looks like he’s having some kind of schizophrenic episode.  This “itching/crawling” stage has been worse than most of the active stages of shingles. Vitamin E oil has helped some, but pain meds don’t do much for the hideous beyond-itchy sensation that is also accompanied by pain and discomfort, intermittently. When the itching is under his eye he can’t put any skin cream on or near it.  Sometimes it feels like he’s been shocked – like an electrical shock. He had a few bad nights recently and I felt DONE with this whole adventure. I was sleep deprived and weary of sleeping on the small loveseat, waking up when he does, worrying, etc. Then of course I felt guilty because he’s the one suffering… that’s how it goes when marriage is “for better and for worse”. Thank God he had a good night last night. We both got some sleep! He had almost fallen asleep behind the wheel when he was on his commute home from work (he went back to work last week–he is not contagious anymore and he’s burned through all of his sick days). Anyway, this shingles thing is still a big issue for our family. Oh, I have an update on his eye: he was prescribed eye drops. The eye was inflamed but it looks like there is no nerve damage—whew! Let’s hope he gets the all-clear on his next appointment (next week). Shingles is not behind us yet, but at least we can see the light at the end of the blistery tunnel.  By the way, some of you were rather horrified that I posted his picture–HE took the photo! He sent this selfie to his co-workers (Can you imagine receiving this in your inbox if you worked with him? Yes, many of them got the shingles vaccine after seeing this photo!). Later, he offered his photo for my blog. It wouldn’t have mattered who took the picture though, he pretty much lets me do whatever I want. That’s probably the secret to our almost-27 years of marriage! Our anniversary is on February 20. Hopefully he’ll be feelin’ fine by then and he can take a shingles-free selfie of both of us.

***UPDATE 3/24/2015: Would you believe that he’s still miserable? He’s doing much better but he’s not 100%, not even close. Intermittent pain in his face feels like his nose hairs are being pulled out (his description). He also suffers from extreme itching under his skin, inside his nose, and behind his eye. Between the itching and the stabbing nerve pain, he’s *frustrated!*.