Of all the non-food related questions I get (and believe me, I get some doozies), one of the most common ones is, “Why are you so sick so often?”
Um… because I got a lemon for a body?
Because my whole life now revolves around my health and simply maintaining – which affects everything I do, including ye olde blog – I figured it was high time to shed some light on the situation. Not to garner pity or passing sympathies, but just so folks understand what I deal with, and why this isn’t a “daily post” kind of blog.
And hopefully, it’ll bring some public awareness to this disease. I’m not the only person my age suffering through this, and that’s partly because not enough attention is being paid. Perhaps with some background, folks will be able to spread the word, understand those who might be dealing with similar issues, and maybe, just maybe, some research will be done someday so that others won’t have to go through this. - K.A.M.
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I stare at the half-written blog post through bleary eyes, absent-mindedly wincing & clutching at my left side as another spasm passes through. I’m exhausted, my joints and muscles ache, I feel flu-ish, and have strep throat this time around. There’s no way I can also get a photo shoot in, I don’t care if it is just a bunch of marinated noodles. Not feeling like this. *sigh*
It’s time. Time to hit “Save Draft” and work on something else before I really need to force myself to take a break and rest. The book… I should probably bust out a couple more paragraphs in that chapter. The book has a deadline; the blog can wait.
And so is the daily shuffle of all the things in my life that are Priority 1 (which seems like everything) because my body just can’t handle more than 3-4 hours of work at a time.
It wasn’t always like this. When I first started this blog, just shy of four years ago (!!!), I was a totally different person. Younger, naturally,with seemingly boundless energy. I could zip through long, demanding work days, squeeze 2-3 Pilates workouts in there somewhere, go out with friends, and come home to prepare – and photograph and post – another awesome new recipe that would surprise even me.
I miss that chick. She was so damn efficient.
Nowadays, I’m lucky if I last for more than a few hours without needing to curl up with an ice pack or just go completely horizontal because the pain has exhausted me so much I just need a break. Naptime is actually a requirement most days, and I now take more prescription meds than my mother, who is almost twice my age. I feel like I’m 98 years old and I haven’t even gotten to age 36.
So what the heck is wrong with you anyway, Poor Girl?
A lot of things.
How I got here…
I won’t go into the whole story of how all this began, since I already wrote it out so nicely on one of my other blogs. But the Cliff’s Notes edition, for those of you who don’t want to read another post, is this:
Aside from being born with a heart murmur and having to be hospitalized repeatedly in my first 2 years of life for that and a slew of other medical issues, I also have asthma, had cancer when I was 12, have hypothyroidism (which I’m still learning how to manage); PMDD (not to be confused with PMS; I wish I still had regular PMS!!!), and now, I get to add postherpetic neuralgia to the mix – otherwise known as PHN.
Before I can explain PHN, I need to explain how you get it (because not everyone does, lucky devils).
It all starts off with a mad case of shingles. That’s that weird disease that seems to fly under the radar as an “elderly person’s disease” and for which all drugstores are advertising the vaccine (more on that unfairness later). Shingles is basically the chicken pox virus that has been “reactivated”, so to speak (after you have chicken pox as a kid, the V. zoster virus travels into the nerve paths where it lies dormant for years – until something triggers it to come back).
The jury is still out on what exactly triggers shingles, but so far they’ve narrowed it down to increased age, being immuno-compromised due to things like chemo, or just good, old fashioned stress (which is what apparently triggered mine). Not everyone who deals with these things will get shingles, but the risk of getting it is much greater if you do fall into one of these categories.
After last year’s mad, frenzied move to this apartment, I got my first bout of shingles. It was awful and I had no idea what was going on with me. One day I felt like I was coming down with a cold and that I’d pulled a muscle in my back; next thing you know, I have several small volcanoes of blisters all over the left side of my torso. And they spread. And itched. And BURNED!!! And then that deeply excruciating nerve pain – pain that doubles me over and squeezes tears from my eyes, pain I can’t even begin to describe properly to those who haven’t felt it – began.
That was in March of 2011. The pain has not let up since.
The shingles themselves went away after I got my meds & topical treatments from my MD. My healing time was about average, which is common for me. How long with the pain last after the blisters heal? Just a couple more weeks, I was told, and that seemed reasonable to me. Couple more weeks of pain and I could resume my life and settling into my new place.
Two, three, four weeks passed and nothing. I had a follow up appointment and was told to give it a couple more weeks. I did so and two months later I was still feeling daily, excruciating pain. After another follow up, I was told it was official. This pain wasn’t going to go away anytime soon, if it was going away at all. This pain was here to stay.
Here to stay.
Pain. All the time. For the rest of my life.
PHN 101 & What It’s Like to Live with It
See, PHN is something that afflicts about 1 in 500 shingles sufferers. It’s basically chronic, severe nerve pain that is caused by the damage done to the nerves by the varicella zoster virus (imagine a wire without its plastic casing, with all those little wire endings exposed – that’s what my T1 through T3 nerves are like now). Some people with PHN only have it for a few months; some have it for years or indefinitely. And all of us who deal with it have to make a lot of changes.
I feel like I’ve had to learn to live life all over again. I hate saying that because I know that what I’m dealing with is nowhere near as difficult as having to learn how to walk or talk again. But despite other folks’ issues appearing more severe to others, this is just as hard to deal with, if not harder. Because what I’m going through is an invisible illness, and adjusting to life with something like that makes it much harder to be understood, or even believed.
And I get it, up to a point. It’s hard to explain to an outsider, or even my friends & parents, what exactly it is I feel because they have nothing to relate to. It’s not like I can pull back a pant leg and show them my scar from where they removed the cancer, or jokingly show pride at yet another walking shoe for yet another broken toe.
This is a whole other animal. I live in pain now. Live. Every minute of every hour of every day of my life since March of 2011 has been – and, unfortunately, will continue to be – marked by serious pain. Tear-inducing, gut-wrenching, gasping-for-air pain when I’m having a serious flare up, and on those days, all I can manage to do is curl up near an ice pack and cry softly until the pain subsides to a manageable level. Some days are good, some days – like today, when it will be another 106° day – I’m just in pieces. It’s excruciating, exhausting, and downright depressing.
In my case, it also comes with the added bonus of *drumroll please* recurring shingles! Yay! NOT. Feeling like you have an evil monster living inside of you, taking your nerves between its sharp, gnashing teeth and chomping down as hard as it can several times a day is already bad enough; adding all the other symptoms that go along with an actual shingles outbreak, including having to quarantine myself so I basically have no social life left – that’s just cruel.
That all sounds like it sucks. Isn’t there anything that can be done?
Oh, sure there is. On the surface. And if it’s out there (and not ridiculously expensive holistic or acupuncture care, which I’d try but truly can’t afford without selling a kidney), I’ve tried it. I’ve seen 4 doctors for this, have had every blood test imaginable, and they’ve all ruled out anything physiological as the cause for my immune system not being able to fight anything or help me heal. Nothing except for stress, and no one seems to be paying attention to how to treat that (and I think that should be the main focus, but I don’t have a degree to back up my theory).
Med-wise, I’ve tried it all: Gabapentin, Amitryptilene, Nortryptiline, meds whose names I no longer remember – all 4 doctors I’ve seen for this have tried everything they can think of. Lidocaine patches, cayenne patches – tried ‘em. They help some, but it’s like taking a baby aspirin for a migraine, so there’s not much help that comes from these.
The other problem is that the side effects of these meds are often times worse than the issues they need to treat, so I now have major brain fog, muscle issues (thankfully I stopped taking THAT med!), and other stuff I didn’t have before. So if the pain doesn’t exhaust me, all the extra crap in my system will take care of that just fine.
What about the vaccine, Poor Girl? I see signs for those everywhere.
Don’t even get me started on that one. I see that sign everywhere too, and all I want to do is throw rotten tomatoes at it. The FDA has only approved Zostavax for adults 55 and over (it was for just 65 & over, but they finally reduced that a few years ago), and there is no way – NO way – to convince pharmacists to bend that rule in the slightest (which I get; their job is on the line. Sadly, so is my health). So, for those of us – and there are a LOT of us, unfortunately – who are in our 30′s and suffer from PHN and/or recurring shingles, that is definitely not an option.
Which is pretty lousy, if you ask me. By the time the FDA gets off its butt to do the trials needed to help those in my age bracket, there will be many more of us with this debilitating disorder, and that seems exceedingly unfair to me. Not like it’s better to have this sort of thing when you’re older; but to have your life slow down so drastically when you still have so much to give – it’s really hard to reconcile within oneself. In fact, it’s the hardest part of all of this.
Adjusting to a different life…
I’m lucky that a lot of my past work experience has been working with folks with disabilities. Working with some of my clients gave me a greater insight into what it’s like to deal with a disability, not to mention the trials & tribulations of navigating the system. Now that I have one of my own, I see with even more clarity the difficulties associated with having a disability. For me, a lot of them have been centered around adjusting to the idea of it and to a different kind of life that is poles apart from what I was used to.
But there have been upsides, too. I’m now even more sensitive than I used to be to those who have disabilities, particularly those folks with “invisible” conditions such as neuropathy, fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, lupus, etc. I won’t get into it all here, but trust me, getting people to believe you “have something”, just because you take the time to look good so you don’t feel so crappy, is hard.
It’s also given me something new to talk about that needs to be talked about (like eating well on a budget, tee hee), and I hope this post sparks some sort of discussion about some of these issues. I know I’m not the only one in this age bracket (let’s say, women ages 30-45) who’s going through some difficult medical situation, but I feel like we kind of get forgotten by researchers and practitioners. If our voice could be just a little louder, perhaps we can be heard and maybe relief for some of us won’t be such a pipe dream.
Lessons learned, lessons to be learned…
So that’s it, folks. There’s the long rambling story about what I have and how it affects me. To say that it’s been a difficult journey is an understatement. But as much as it sucks, it’s definitely proven that I’m waaaaay stronger than I ever thought I was. Except for a couple tattoos and my nose piercing, I’ve never been fond of too much pain (not that I was fond of that pain either, but you know what I mean); to know that I can actually push through this and still hold down the blog, book, job, etc. is nice, though there are days I feel like an absolute failure because I couldn’t finish everything on my To Do list.
But then I realize… is that really so bad? Is it the end of the world not to have every single task crossed off for that day? Is it worse than listening to one’s body and knowing that slowing down is going to be way more beneficial than overdoing it and being down for several days?
The answer is: No.
Oh, the Type A gal inside me will argue against that, as will many of you who read this. But having to slow down so much has forced me to take stock and reevaluate how I do certain things. And as much as I’d like to deny it, I know that pushing myself so hard is not the good thing I once thought it was. Not anymore. Pushing myself to do better, to finish things, to make even sexier food porn than I thought I was capable of – that’s all okay. Pushing myself to do the jobs of 2-3 people, maintain a blog, write a book, worry about elderly parents I wish I could afford to care for properly, worry about debt & bills & collectors & constant shut-off notices, all with a chronic illness – not so much.
Stress is killing me. I know it is. I just need to find a way to rein it in, and hopefully once things like debt and bills and collectors and shut-off notices are a distant memory, I’ll be able to do so. For now, I just need to find some balance in my life, so I can stay focused on the necessities, but also remember to take care of myself and my health before anything else.
It’s a balance I’m striving hard to find every day. And I can’t wait to share the good news with all of you when I finally find it. : )