shingles

Shingles wrap-up and back to the main highway to nowhere

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I started it (blogging about it), so I should finish it.

Started feeling better Friday. Pain continues in waves, but more manageable. At least, I’ve been sleeping, and I’ve been getting around.

I presume I will work (from home) tomorrow, though eight hours of sitting at a laptop might be a challenge.

I hate to be a Debbie Downer…no, really, I hate to…I know you don’t believe me…anyway, I’m just conveying my thoughts…

I’m feeling it’s been a lost week in the context of a much vaster lost period that I’ve alluded to recently.

There is no such thing as no-censhorship mode. If I really unloaded in here, you might feel the need to worry about me endlessly, and then you’d have to distance yourself from me, which you probably already have.

I’m not trying to be cryptic there. If you’re reading this, what I said probably applies to you. I’m one of those toxic people, and I know it.

I’m struggling not to launch into a full-throttle venting of the thoughts that are suffocating my mind. I’m not going to do that.

I’ve just spent 20 minutes starting at the screen and trying to reach into my mind for some thoughts that are digestible. There aren’t.

Sometimes, like right now, I despise this blog.

I’ll go to my other blog now, the one with the songs, the one that probably seems like a sad joke to everyone but that I take very seriously. A couple of people humor me by participating. I do appreciate that, by the way; keep humoring me.

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got through night

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Got a few hrs sleep…

Phone call from worried friend at 8. Wish I had phone on vibrate so I’d have woken just enough to communicate I’m ok. Ring tone (ironically All Through The Night by Cyndi Lauper) was like a pull on the generator, right inside my ribcage. Felt pain coming right back.

I’ve left a message with the internal medicine office that I’m supposed to visit tomorrow.

In the meantime, there are a couple of OTC non-drowsiness things I can go out and get to try.

ugh (and don’t worry, I’m not going to do anything stupid)

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I’m unable to rest at all. This radiating pulsing sensation from this tiny spot on my ribcage is driving me insane. And now I’m fixated on just how woefully inadequate Duke Urgent Care was at addressing my needs today. The doctor didn’t actually exam me. She listened to my self-reported symptoms for 30 seconds. She didn’t bother to see where the pain is most acute. She did what all doctors who don’t read my chart do and suggested ibuprofen and then had nothing else to offer when I responded that I’m not supposed to take NSAIDs.

I’ve stockpiled lots of different meds over the years from bouts with various illnesses. I’m sorely tempted to try my own remedies based on what the internet tells me. No, I don’t think I’m smarter than the doctor. I’m just a lot more invested in finding treatments options for myself.

I’m recalling now all the times I’ve gone to urgent care over the years and I’ve been given antibiotics or antivirals based on a guess of what I might have.

…

2-3 hours later…

Going out of my mind. I do need a neurology referral, but I need the neurologist right this second. Have given up on getting rest and just trying to distract my brain in a way that makes it disregard this sensation.

PREFACE TO WHAT I’M GOING TO SAY NEXT. THIS IS JUST A THOUGHT ON WHAT OTHERS DO, NOT WHAT I AM GOING TO DO…

If you ever wonder how people die of “accidental overdoses”, I can completely understand right now. Forget emotional pain…if you’ve got some physical pain that you can’t figure out how to get any relief from, you may go through your medicine bottles looking for anything that might help get you to sleep. You might not wait to see if something works. You want the agony over with as soon as possible and your mind is not worrying about taking too much of something or too many different somethings.

I AM NOT PRESENTLY IN AGONY NOR WOULD I DO THAT IF I WERE.

I’d be in better shape of I had that reliable primary care provider. I should’ve have at least tried calling the new internist I haven’t seen yet to try to get fit in today rather than having gone to urgent care again.

Ugh.

Shingles ramblings

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If you go back to urgent care for the same problem you were seen for three days ago, they will treat it as if you had never been there before, right down to giving you your disease handout as if you’ve never seen it before. But this is what I needed to do to get adequate pain meds. It certainly doesn’t cut down healthcare costs to bill my insurance company for an extra urgent care visit, when all I needed was provisions for pain relief that I wasn’t provided three days ago. (And if I were uninsured, I’d have spent $150 on an office visit to get a $2 generic prescription.)

I’d have gone to my primary care provider, but I don’t see my new one until Friday. I’ve been waiting two months for this appointment, necessitated by my lack of confidence in my previous provider, a nurse practitioner who would always point out how my health conditions were complex and declare, “I’m not that smart.”

I hope the new internist I see Friday can give me some better explanations of what’s going on with my shingles than the NP and MD I’ve seen on my two visits to urgent care. (I have nothing against NP’s as primary care providers.)

Today, the doctor put down on my sheet that I’ve got shingles and neuralgia, where the latter is the deeper pain that’s been as a big a problem as the blisters.

Neuralgia is a sharp, shocking pain that follows the path of a nerve and is due to irritation or damage to the nerve.

I wouldn’t describe the pain as either sharp or shocking. I don’t know how I’d describe it. Throbbing? But that’s different.

Today’s urgent care doctor was all set to give me a referral to a neurologist, assuming I’m going to have postherpetic neuralgia. Yes, shingles is in the herpes family. Imaginethe Family Feud announcer: “Introducing the Herpes family! Shingles, Chickenpox, Coldsore, Mononucleosis, and CMV! Ready for action!” That reminds me, I had CMV last year. Well, half of us have it. It usually just doesn’t become active, unless you have a compromised immune system.

Anyway…it certainly doesn’t help that I’m sitting up in bed typing this. I need to lie down. Read. Watch more Archer. Play Words With Friends on the phone. Anything but sitting up, because it friggin hurts.

Shingles: Once you pop, you can’t stop

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No, I’m not popping shingles blisters, but I thought that was clever.

I’ve spent way too much of the last two days googling shingles to find out if my symptoms are normal. The pain I’ve been having has been more of the seemingly deep tissue variety rather than from the surface blisters/rash. I don’t know if this is because the rash hasn’t fully blistered yet or because I’m just fortunate not to have blistering pain. It’s certainly very irritating. What was excruciating was putting capsaicin on Sunday. It’s supposed to help with the pain, though it’s supposed to burn a bit. (Capsaicin is what gives chili peppers its heat.) If you can tolerate the burn initially, it’s supposed to ease up after a few days. But I had the severe burning that I assume the label is referring to when it says to discontinue if you experience it. So I discontinued it. And nothing has felt nearly as bad as that.

What has been extremely uncomfortable has been the feeling that I’m severely bruised internally. Everything between my rib cage and spine on my left side feels like it’s been punched repeatedly. But this is a description I’m not quite finding.

Then again, any article from a reliable source prefaces almost every description with “may”.

So the location of the lesions vary. The characteristics of the pain varies. And then the duration of the outbreak varies. I don’t really know if this is going to go on for three more days or three more weeks.

Oh, and after this is over, I can’t just go and get the vaccine. (You probably can. Go get it.) Immunosuppressed people can’t have live vaccines, since the trace amounts of the live bacteria or virus or whatever may be too much, whereas most people handle them. So, I could get this again. Honestly, I’m not thinking about this at all. Just a point of information in case anyone was wondering.

But shingles is supposedly triggered by stress. As long as I avoid stress, I’ll be be just fine!

Bullshit like shingles

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Obviously, I’m not feeling so well physically right now. I’m not really going to blog about the details. From what I keep reading, it could get worse. I’m a bit worried when I read that people experience residual pain for weeks or months even after their blisters are gone. That’s all I need, a new source for chronic pain.

Here’s what’s upsetting me right now. Like all the other times I’ve had serious medical issues, from extended illnesses to surgeries to the entirety of my two years on dialysis, it is not that I’m being exiled from some happy, thriving existence, and I’ll be yearning to “have my life back”. The episodes are unwanted delays in trying to figure out what my life is going to be. I don’t want to have “my life”, as it was as of Friday, back. When I went on to dialysis in August 2009 (and, really, going back to the turn for the worse I had in February 2008), I was not desperate for a kidney transplant so that I could “be myself” again or “get back to doing the things I love to do”. I was desperate for a kidney transplant because I was desperate to create a fulfilling life for myself, and I could not afford any delay.

I feel like many, may years of my life have been lost years, but perhaps none as much as those 3+ years between February 2008 and June 2011. All I did, ultimately, was survive. I got through it.

But after I received that kidney, there has not been a day when I’ve felt as if I’ve recovered from that. My body has remained damaged. It has remained unhealthy. The things I have control over, I haven’t been able to seize control of. The things I haven’t had control over have been significant. In the end, for the last 14 months, again, I just feel as if I’ve survived.

This has been so hard to articulate, because it is not consistent with the attitude we expect from people battling–that’s an unfortunate word…how about surviving–illness. (I’m not a fan of the fighting metaphors. But that’s a topic for another time.) I’m sorry that I don’t fit that heroic template.

But I still haven’t figured out how to live. I haven’t figured out what I enjoy. I haven’t figured out where I fit in. I haven’t figured out what my contribution to the world is supposed to be. And, most painful of all, I haven’t found love. Spare me the talk of learning to love yourself first. A great many people have been helped in their search for themselves and their place in the world by finding a life partner.

My point…and I meant to arrive at this much quicker…is that I have such a ridiculous pile of stuff to figure out, and I’m already operating at such a deficit, that I just can’t afford bullshit like shingles.

When I give the above a quick read, I know it won’t make much sense to anyone.

Let me try to put this another way…

No, forget it…I really cannot figure out the words to make the point I’m trying to make. I suspect this comes out as, and usually does come out as Woe is me!. If that’s the message you take out of this…you know what? So be it. It’s my blog. I’m trying to work through stuff, and lot of that stuff is WOE.

Yup, that’s what I’ve got

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Urgent care even got my nephrologist on the phone to make sure I can take the antivirals. It’s been caught early so I should be fine…at some point…maybe in a week? I’ll just have to do what I didn’t do the week before Labor Day last year, which is to figure EVERYTHING out.  Other than that I will pick up some earplugs from the drugstore so I don’t spend the next few days complaining about my neighbors.

If you have to go to urgent care, its always a good idea to be the first one there in the morning. Well, in order to be seen quickly, it is. They open at 8, but, unfortunately, CVS does not open until 10. So I am getting breakfast at an establish that rivals Chick-Fil-A in its forward thinking. I’ve sworn off the main fastfood chains but not this particular place yet. I’m going to enjoy my breakfast.

Shit…shingles?

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I went through the Mayo Clinic website’s slides of common rashes. Nope…nope…nope…and then, finally…shit, shingles?

This would explain the half-body aches I’ve been having. But the rash is the tell-tale sign. Not on my face or by my eye, thankfully.

It’s always fun to blog about serious medical conditions. If it is, indeed, shingles, I’ll have some legitimate griping to do. It sees to get a lot worse before it gets better. Being immunosuppressed might even make this a little scary. (You see “rare cases…death” in articles about shingles).

I was thinking a few days ago that it would really suck to die from something stupid like West Nile Disease. (It can be quite dangerous for the immunosuppressed). Shingles would be on that list of stupid things to die from. (And by “stupid” in this context, I mean illnesses that don’t kill most of the people afflicted. Malignant brain tumors, pancreatic cancer, and speeding drunk drivers…also stupid causes of deaths. What’s not a stupid thing to die from? Natural causes at age 95 (see Phyllis Diller)? I don’t know…)

If it’s not shingles, maybe it’s just an allergy to shitty neighbors.

I’ll go to urgent care in the morning.