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Tuesday, May 3, 2011

Learning to live with PHN, Part 1

I've never been the healthiest person on the block.

I was born via dramatic emergency C-section conditions because my heart was failing and my mom was too weak to continue with natural labor.  At 18-months I was hospitalized because of more heart murmur issues, and this continued on & off until I was 5. My feet are slightly deformed (which I'm claiming as my new excuse for tripping on everything), I had cancer when I was 12, have a rather unsexy case of asthma, and was recently diagnosed with hypothyroidism.  And this is just the very tip of the iceberg.

This is typical in my family, actually.  We age beautifully with nary a wrinkle nor gray hair in site for eons, but healthwise, we have the shittiest genes on the planet.  Cancer, heart disease, hypertension, high cholesterol, diabetes, and a few other formidable disease foes run in my family on both sides.  I do my best to keep things under control through diet & as much exercise as I can get in on those special days when I have zero unbroken bones, but even that's not enough sometimes.  Some things you actually can't control.

I learned that the hard way this year.

In March, in the midst of all the craziness of my unexpected, random move upstairs, I ended up with shingles.  Yes, shingles!  At this age!  Maybe it was extremely ignorant to think this way, but I always thought shingles was something awful reserved for the poor elderly population of the world.  It certainly should not afflict a young lass of 34... should it?

Apparently it does, regardless.  Advanced age, a compromised immune system, or extreme amounts of stress can all cause shingles to just pop up out of nowhere and flip your life upside down.  I fell under the latter category, with my both my doctor & my chiropractor both telling me that I need to figure out a better way to handle stress.

Um, do you think I LIKE having a tiny volcano on my abdomen? 

Seriously, that's what I came home to one day.  My very first full day at my new place, I got home, fed the furbabies, checked my mail, and proceeded to take off my clothes before taking a shower.  The minute I had my shirt off I gasped in horror.  WTF was that???  A rash?  Chicken pox?  Chicken pox do start on your tummy, right? 

But you can't get chicken pox twice, unless you're totally weird... Shit, shit, shit! Maybe it's not a disease, maybe it's just an allergic reaction to something.  Soap that wasn't rinsed well in the shower this morning  Maybe something I ate? 

All these thoughts swirled through my mind as I turned around and inspected the rest of myself in the mirror.  That's when I realized that the volcano had friends.  Even tinier, nano-volcanoes of fiery discomfort were on my back & side.  SHIT.  What was wrong with me???

I snapped a picture with my phone, sent it to my mom (who, when I am in a panic, immediately receives a medical degree), and proceeded to freak out.  We did a complete inventory of everything I'd eaten, drunk, touched, etc., and she finally decided it was "that one rash [I] can't remember the name of right now".  Gee, thanks, Ma!  I hopped online, trying to compare my inflamed skin with pictures of folks with other dermal afflictions and came to no conclusions.  In my flustered state, they all looked the same to me.  It's a good thing I never decided to be a dermatologist.

When the volcanoes kept multiplying the next day and I could no longer stand the feeling of my bra against my skin, I hastily made an appointment with my doctor and dashed out of work early.  "I think it's the shingles," said my mom when I called her and let her know I was going to get checked out.  "Shingles, Ma?  Seriously?"

"Yeah, this is a classic case of shingles," my doctor told me about 40 minutes later.  "It's almost textbook!  Very nice example [why are you so excited about this??? Quit being a nerd & make it go away!].  You just stressed yourself out again, kiddo..."

Of course I did.

The next few weeks were nothing short of torture.  I missed an entire week of work because I was in such serious pain & discomfort.  Between the whole left side of my torso feeling like someone was repeatedly splashing scalding hot water on me, the intense nerve pain deep in my side and back, and having to take pills every 3-4 hours, I had never experienced anything like it.  And I'm no stranger to being laid up sick in bed!  Surgeries, pneumonia, vertigo, you name it; I've probably been laid up with it.  But never with this kind of intense pain

It was brutal, cruel, and never-ending.  It never, ever stopped (still hasn't), no matter how many vicodin I took or how many ice packs I'd use for relief.  Sometimes it felt like I'd cracked a rib, so every time I breathed was sheer torture.  Sometimes it lessened to a deep, but persistent ache that I could sort of huff & puff my way around throughout the day.  Other times, it felt like some giant demon was inside of me, taking my entire T-3 nerve and gnawing through it with razor sharp teeth & vicious jaws

I couldn't think, I couldn't sleep, I couldn't even putter around my new place and put stuff away.  The cats were all confused, particularly Miss Hana, who is very used to calling my tummy her "bed" whenever I'm at home.  The pain made it impossible to move into a comfortable position no matter how hard I tried.  Even wearing clothes was sheer torture.

Over the next couple of weeks, things started to die down a bit.  My blisters finally healed over & were starting to slough off on their own, the back pain I'd assumed was from a pulled muscle was now just a faint ache, and I could almost wear proper clothes again.  But that stinkin' pain in my side - from the middle of my ribcage down to my waistline - just wouldn't go away.

So I called my doctor and she prescribed more pain meds.  Lovely.  Just what I needed: to continue assaulting my liver on a regular basis with more Vicodin.  But I took the refill anyway, because how else was I going to get through the days & nights?  It's not like Motrin did the trick, and the ice packs were a very temporary type of relief. 

A couple weeks later I was still in pain & decided to get checked out one more time.  Sure enough, I had the one "rare condition" that "usually just afflicts those over 50": postherpetic neuralgia, otherwise known as PHN, otherwise known as hell:

"Severe, acute pain caused by nerve damage due to the varicella zoster virus.  Pain usually may appear in the area of the shingles rash, but the size of the PHN pain can vary considerably.  In some people PHN pain can last for months, or even years..."

It had already been two months and I had no clue how to make it through the pain every single damn day.  How do I go about this?  How do I make life as close to normal as it used to be?  How does one live with perpetual, acute pain and still find reasons to smile?

That, my friends, is going to be my biggest new project of the year.


Anonymous said...

Good luck!

Sarah Thompson said...

Hi Kimberly,

I am a fan of you because you find a way to create beautiful plates on a limited budget and then, you share the beauty with me through your blog. You really inspire me. Your positive attitude is contagious.

Having said that, nerve pain is excruciating. A friend of mine who manages a wound care clinic found a medical device that she convinced Kaiser to purchase. It is called the "Micro Vas." It treats a variety of different types of nerve pain and non healing wounds. Do you have insurance? If not, you may be able to work out a trade with the practitioner. I have a call into the company to see if the machine helps specifically PHN. But, I don't see why not. I can help you find a microvas practitioner if you are interested.

Secondly, I manage a podiatry clinic. If you ever decide to seek treatment for your feet, give me a call. Dr. Kelso is a gifted diagnostician and good listener. Maybe he could help you.

I really hope that you feel better very soon.

Sarah Thompson
American River Podiatry

Teresa said...

I have lupus and as a result of a compromised immune system, have now had shingles TWICE! So I know how you feel--it sounds like such a gross old person's disease, doesn't it? And it's hard to explain to friends that it's not contagious, etc. etc.

Hope the PHN is better under control. My grandmother has that (but she is definitely one of those who fall in the "over 50" category). If you've found anything to manage the pain, I'd love to hear it!

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