That post I made back on April 25th of my car and the Targa top mechanism doing its thing? The very next day, everything went to shit...and I had no idea just how much of an effect the following week would have on the months after.
WARNING: REALLY LONG POST AHEAD.
A summary of that first fateful week:
April 23rd - May 1st: Will is in the Bahamas for GPF 10 (yeah, a work trip to the Bahamas, I know). I'm taking care of the house and the dog while he's gone.
April 26th: I get a migraine. No big deal, it happens every three months or so.
April 27th: Wow, this migraine is lasting a while. Cue ice and ibuprofen and cautious rubbing of temples and muscles.
April 28th: Seriously? A three day migraine?!? This is crazy. My eye really hurts too, maybe it's actually a sinus infection.
April 29th-April 30th: These two days were a blur. Pain, nausea, no sleep, can't keep any medication down.
May 1st: Have to tell Will I can't pick him up at the airport. He ubers home, finds me miserable, in massive pain, and puking. Just before midnight, I ask him to take me to the ER.
May 2nd, 2am: "You have shingles."
A bit more information:
So yeah. Shingles. Affecting my face and head, which is not as common; specifically my trigeminal nerve, spreading onto the maxillary (upper jaw) and ophthalmic (eye) nerve clusters. Lovely leprous lesions on the top right quadrant of my head, eye swollen shut and useless, pain like I truly hadn't experienced before. Seriously, no lie, it was the worst pain I've *ever* had...and I once had my big toenail ripped out from the root in a bizarre accident, so that's saying something. To give you an idea of the area covered, here's an illustration I found online somewhere of the trigeminal nerve (and it doesn't show the gazillions of offshoot nerves branching off the major clusters):
One interesting thing: In spite of the five days of hell before, the "going to the ER" timing was actually good; it was the absolute earliest I could have gone and had it diagnosed quickly as shingles, because the lesions didn't truly pop until the 3rd. This is what the ER doctor saw:
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| May 2nd, 2015 - 12:14am |
That's it. Just a swollen, watery eye and some skin redness, which (silly me) I thought was from the ice packs and rubbing. The doctor heard my tale of woe, took one look at me, called it as shingles and said the lesions would come soon. And they did. This is barely a day later:
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| May 3rd, 2015 - 4:10am |
I'll spare you the weeping, oozing (and later, crusty) grossness of the progression. This picture shows the affected area quite nicely...it was quite literally a line down the middle of my face from scalp to nose tip, then back from nose tip to earlobe, and all the way around to the back of my head and up my scalp to the center of my head.
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| May 3rd, 2015 - 12:14pm |
It got much worse from there. Not a glamorous time in the Lawton household.
The treatment:
Immediate prescriptions for Valacyclovir (to fight the virus itself), Gabapentin (nerve pain suppressant), and industrial strength Ibuprofen (which did nothing but make me throw up even more); my GP later added Prednisone (a steroid) and Percocet (oxycodone and acetaminopen) as well. The pain didn't stop, even with all of the meds, but the lesions did go away in about ten days, which greatly impressed my doctors.
Unfortunately, the fun was just beginning.
My eye fun:
The nasty pain and swelling of my eye and the resulting loss of vision called for a trip to the ophthalmologist, who had frickin' awesome news (that's sarcasm): the shingles virus (Herpes Zoster, the grown-up version of Varicella Zoster, our dear friend chicken pox) had made its way into my eye itself, between my cornea and my lens. We added steroid drops to the drug regimen and monitored everything carefully, which meant bi-weekly trips to the ophthalmologist for the first few weeks. My eye was *not* happy:
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| May 15th, 2015 - 5:09pm |
(That pic was taken two weeks after the lesions first appeared; they had cleared up beautifully, but the eye troubles were just beginning. As you can see, my eye is swollen quite a bit; I am struggling to open it for the picture. My right eyebrow is lifted because of the swelling...my eyelid and the eye itself were swollen so much that they pushed the eyebrow out and up.)
Those were some scary weeks for me. I was terrified of losing my vision. I couldn't see out of my right eye, and my left eye was suffering from sympathetic watering and had trouble staying open as well. I couldn't read, browse the internet, watch telly or movies, play video games; even if I weren't on the cocktail of drugs, driving was completely out of the question because of my vision. Email and messages had to be neglected, because I couldn't see to take care of them. I had to be led around by the arm; Will very sweetly guided to my multiple appointments. I hoped that things would work out okay, but had to plan a bit in case they didn't.
It took about a month for the double dose of steroids to reduce the swelling, but eventually it did go down and my vision slowly returned (though my eyelid still drooped a bit from muscle damage caused by the inflammation). I continued weekly visits to the ophthalmologist, and one of those visits brought the news that I now had corneal lesions, caused by the body attacking the site of the virus. The virus itself was gone, but the body was kind of going into overdrive and slamming the corneal area with antibodies, which were causing lesions on my cornea (cue the "but of course" resigned reaction and the rekindling of the fear of losing my sight). Another month of diligently continuing the steroid drops reduced them to near nothingness, but to this day I still have to use the drops to prevent a rebound, and I am seeing the ophthalmologist every three to four weeks to keep monitoring the cornea.
My face fun:
The lesions healed beautifully; the only trace of them were some scars on my scalp, a pockmark on my forehead, and a few minor spots of redness at my temple and above my eye. That's the good news.
The bad news is that I was one of those even more rare cases that gets a complication called "postherpetic neuralgia" (PHN for short). PHN is basically nerve damage caused by the virus; in my case, it caused surface numbness (mostly around my eye, up to my temple, and back into my scalp) and pain. A whole fuckload of pain. There were two main types: persistent blanketing pain and random spikes. The persistent pain over that entire quadrant of my head was constant...think of how your skin feels when you get a sunburn, that weird tightness and the continual awareness of the damaged area. It's kind of like that, always *there*, always hurting.
The pain spikes were (and are) a right bitch. Look back at that picture of my face, the one taken from above and I'm looking down. Everywhere there is redness or a lesion (including my scalp) is where I can get pain spikes. Sudden, sharp, take your breath away pain. On bad nights, I would end up crying and throwing up from the rapid-fire pain and the unpredictability of the pattern in which it would hit. My skin was extremely sensitive: wind, touch, my hair, even temperature differentials caused horrible pain. And weirdly, the pain itself would take different forms. Sometimes it was a stabbing pain, like someone jabbed an icepick into my skull. Sometimes it felt like burning, sometimes like sudden freezing ice, sometimes it was like fire ants were burrowing into my skin. Think of all the information that your nerves communicate to you every nanosecond, then imagine that information getting turned into mangled signals that the brain confuses and jumbles and can only interpret as "that really hurts". It would be fascinating if it weren't happening to me.
The aftermath:
It's been six months since I first thought I had a migraine. Six months since the shingles virus "activated", to use the jargon, and I'm still struggling with the pain. After a lot of dosage tweaking, the Gabapentin has helped a bit with the persistent pain; at the least, it has dialed it down in intensity. Unfortunately, the pain spikes continue. The frequency has lessened, but they are still bad, still random. There are a few things that I have learned trigger bad episodes: the sun really causes trouble, the wind, pressure on the trigeminal nerve or some of the more affected areas (like my temple, parts of my scalp, or my forehead). I've also found out that too much activity can cause the pain spikes to worsen; the pattern has become essentially "one good day out and about acting like a normal human being means two to three days of pain and exhaustion and possibly being bed-ridden".
It's getting old. The constant pain. The exhaustion. The inability to lead a normal life, and the punishment when I try. The Gabapentin has frustrating side effects: short-term memory loss, blurry vision (especially scary when battling corneal lesions), body chemistry changes. The Percocet doesn't do much at all for the pain; I barely feel it take effect, but I still take it on bad nights in the hopes that it will at least let me get a bit of sleep. But as an opioid, it comes with its own issues, so I use it sparingly. Generally, PHN last months, and in some rare cases, it is permanent. In
my lower moments, I think of the possibility that this could be a
forever thing, and I go to some pretty dark places. The more this goes on, the more tired I grow. I had hoped that I could acclimate to the pain, slowly reset my bar for what "pain" is, but it hasn't happened (or if it has, it's not enough). The mental/emotional parts of me are taking a beating.
Showering *hurts*. Lying on my right side is only possible with careful positioning of pillows (which never stay in place). Because of the meds and the pain, I can't drive often; my lovely new car sat for months waiting patiently for me to take it back out. I can't socialize much; during the first few months, I missed the weddings of some dear friends because I was bed-ridden with the pain. I can't be in the sun, and I can't wear hats to block the sun because the pressure causes pain. Will worked hard and got his private pilot's license recently, and I can't go flying with him often because the headset puts too much pressure on the affected areas, the sun hurts, the wind hurts, the noise hurts. Basically, I can't really *live*.
Fuck PHN, fuck persistent pain.
Some bright spots:
Will has been absolutely incredible through all of this...he's picked up the slack when I've let things fall, been there to prop up my Gabapentined memory, given me a hand to squeeze when the pain gets bad, and has just been an amazing rock for me to lean on. When I was puking for days because of the pain, he made sure I had water, crackers, a cold cloth, a bucket by the bed, and a clear path to the bathroom at all times. When I couldn't lie down because it hurt so much, he got me a seven foot teddy bear to sleep upright against. He gives me a shoulder to cry on, an ear to vent to, a hand to hold. His patience has been incredible, much greater than mine; he overlooks my bitchy moments, doesn't berate me for giving in to the pain, gives me reasons to work through it. He's been amazing.
I have close friends that have been there for me, always ready with a joke or a smile or a delivery of Panda Express to distract me and brighten my day. One of my dearest friends has been going through their own shit, dealing with cancer and surgery and all that entails, yet they still reach out to me and ask how I'm doing. We share stories about the pain and the drugs and the side effects and the tiredness and depression and emotion...it has helped immensely to be able to compare notes and talk candidly with someone who knows firsthand what it's like to try to live with pain.
I've been able to help a few acquaintances by sharing information and anecdotes and my experiences; one has a mother dealing with neuralgia (not from shingles, but similar effects), another has nerve damage and was excited to talk to someone who understood how stupid it all is. I've connected with former co-workers who had similar experiences, forming an informal sort of support group. I've had a bit of life put into perspective by all this; some things become bigger, other smaller. Like many who go through life-changing experiences, I have learned who is there for me and who isn't (and have let the "isn't" folks fade away). People I least expected stepped up in ways that caught me wonderfully by surprise. I'm fortunate to be in a place in life where I can focus almost exclusively on dealing with this, which has been an incredible help.
I am lucky to have these bits of brightness in my life.
To wrap it up:
It's hard to admit how much this is getting to me. The bright spots I talk about above are awesome, but it still gets rough in the dark hours of the morning. I love that people care; I hate that I don't have any progress to share when they ask. I look fine, until you notice the slightly drooping right eye and the facial tics caused by the pain spikes. People see me out at an event or a gathering and are excited that I am "back to normal"; they don't see the days of backlash from being "normal" for that day.
Persistent pain is a bitch. It saps your strength, makes it hard to breathe, makes you a grumpy motherfucker. You feel like a complete whiner and weakling and asshole if you let it get to you. It's hard to explain what you are going through, especially when there is no visible sign of the malady. You feel like you should be handling it better. You get pissed: at your body, at the virus, at chicken pox, at the useless medications, at everything and nothing and especially yourself. You feel helpless. You feel angry. You feel useless.
In short: It sucks.
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Bonus pics:
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| Pepper, keeping me company. |
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| My Nerd, with sympathetic eye patch. |
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| Awesome flowers from an awesome friend. |
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See? I wasn't kidding...it really is
a seven-foot tall teddy bear. |
