Monday, June 18, 2012

Proving Your Doctor Wrong Can Be Quite Gratifying!

Okay, if you have never had Shingles (not the house kind, but the kind your soul lives in - the body kind) , consider yourself a lucky, lucky, lucky ducky. This is actually one condition I would never wish on my worst enemy. The other one is Labyrinthitis, a lovely inner ear infection which makes you lose your balance and feel like you just got off a carnival ride 24/7, which I also had the pleasure of suffering through once. But the Shingles, I've had them multiple times. This time, I nearly got into it with my doctor about it.

I am currently 42 years old. I got my first case of Shingles when I was in my late 20's. I had thought I was age 28, but the fight with my doctor the other day proved me 4 months off. My bad.

When I got them the first time, I knew nothing about them. Never heard of them, didn't know what the heck they were. I thought that I had been bitten by a strange poisonous spider or something. I had been having terrible stabbing pains in the back of my head. I'd just be sitting there talking to you and all of a sudden, I'd double over and grab the back of my head and not be able to do anything but freak the other person out because I couldn't explain my sudden pains. It felt as though someone was stabbing me in the back of the head with a  butcher knife.

I went to the dermatologist because I had three spots in that area hidden under my hair (they felt like large mosquito bites). I told her about the pains, she looked at the "bites" and then she decided to take a scrape and test it. Sure enough, she was surprised to find that I had Shingles. Then I got the full smack of them. Oh... my... lord. Like I said, you don't wish these things on your worst enemy. I broke out all over the right side of my face with blister patches which itched to high heaven, oozed, crusted, then turned a bright reddish purple, and were accompanied by a combination of dull pounding and searing pain.

You see, Shingles is an infection of your nerve endings, making your skin feel pin-prickled and so sensitive I couldn't even have clothing touching it the first time. Quite a nasty assault on the body. Pair all of this with horrible fatigue and then post-herpetic neuralgia (which can last from months to a year) which is pain that you can't see, but feels like someone is punching you as hard as they can and/or you just got hit by a Mack truck and you will get my drift. They suck. And unless the blisters are present (for a short period during the attack), you can't see them, so people have no idea what you're going through.

Here is what the rash looks like (not the horrible purple stage, which thankfully I didn't get to this time).

They attack one half of your body because they follow nerve endings, although I have had a few tiny patches do an occasional jump to the other side and they're nearly always in a quadrant of your body (waist, face, etc.). It is a basically a form of what you are familiar with in childhood - Chicken Pox. It's a form of Herpes (gasp!) Zoster that stays dormant in your body until it erupts (usually after age 50) if you are unlucky enough to get it. You're only supposed to get it once. Bullsheets. I have probably had them once a year since the first time. Luckily, all subsequent cases since the first one were mild enough to be masked as something more akin to Poison Ivy. I've learned over time to tolerate them without medicine, but the pains I experience beforehand (various places on the body) are a dead giveaway.

Now, this time I knew it was different. The rash was more widespread, then pain more severe, I could feel the fatigue setting in. I could tell this was no ordinary case. I called the dermatologist. She was out. It was Friday and I'd be damned if I was going to suffer through these all weekend, so I insisted on seeing someone. Her physician's assistant was booked up. They suggested my regular doctor, who could see me an hour away since her PA (much closer) was also booked up today. I leapt at the chance and went.

I told her "I know these are Shingles, without a doubt." She looked me square in the eye and said, "I don't think that's what they are. I think it might be some kind of dermatitis, but not Shingles." I kept my blood from boiling. I said, "I've had them before and I know what they are. It should be in my records, I came here to Dr. Schmidt and she diagnosed me." She replied, "We have no record of that here. How long ago was it?" I told her I was 28 when I got them. She said, "Well, that's impossible then because Dr. Schmidt didn't come here until a year after that."

At this point, I was getting upset and frustrated. And I love my doctor! I was getting pissed. The doctor didn't believe me and they couldn't find my records. I said, "Well, I know I came here. I know I saw Dr. Schmidt. And I know she did a scrape and diagnosed me with Shingles and gave me medicine for it, so you must have it in your records somewhere around that time." She replied, "She wouldn't have done a scrape here." I was about to cry.

As I showed her my rash, all clearly visible without disrobing, she demanded suddenly, "Take off your shirt." I told her they were just where I showed her and she demanded again, "Take off your shirt!" I was sitting in the dang chair where you get your blood pressure taken, not even on the examining table behind the door and there was no curtain to hide me if a nurse suddenly opened the door. She had to demand a third time, "I said, take off your shirt," before I finally sheepishly obliged. I think she wanted me to prove that it wasn't Poison Ivy and that I wasn't lying about it not being other places on my body. She hurried out of the office, disbelieving me, and I was clearly able to hear the conversations between her and the other staff members trying to catch me in my "lie." I was fuming. But I had to be patient and persist because I knew I had to get the medicine.

Finally, she came back with what appeared to be an old faxed report and said, "Well, we finally found the record from December of 1999." She said it as though I had been horribly mistaken, even though it was only four months after I turned 29 (not 28 years old as I had stated) and said that Dr. Schmidt would have just gotten there and yes, it did say that they did a scrape at the office. Well, huh. "I told you so!" I shot the words and a pointed finger at her.

THEN, she called me up onto the examining table to do a scrape, which is a rather unpleasant thing in itself. They literally take a blade and scrape your skin raw to get cells to test. THEN, they scrape it as hard as they can with those long Q-tips. It hurt. I was insulted. And I didn't even get an, "I'm sorry," about me being right and her being wrong.

I got my meds even without the definitive test results (which I was supposed to receive today and didn't), so I don't care. At least I'm being treated and it's better than it could be. I just feel drained. I hope I don't get the post-herpetic neuralgia this time. The first time, I would have to wake up in the morning, take the strongest pain pills they could give me and go back to bed for four hours until they really kicked in and I could move my body enough to get out of bed and shower and then put in a half-day of selling caskets to funeral home directors.

I felt miserable and half-dead and my boss said, "Well, you don't look or seem sick," because I looked okay and he had no experience with Shingles, so no sympathy there. Oh well. I've learned it's a personal battle and I just have to make do. I worry that people might think I'm lazy because they can't "see" the illness. People with things like fibromyalgia will know what I'm talking about here.

It also scares me a little, because one of the reasons people get frequent bouts of Shingles is because they have an auto-immune disease or cancer. I've not been diagnosed with anything, but who knows what is lurking in my body and has yet to rear its ugly head? Doctors miss so much. Heck, I had to convince them I have Shingles!

As for the stigma that comes with them, that's another story. People are afraid of things they know little about. I found that Shingles can be passed to others who have not had Chicken Pox in childhood, for instance, when the blisters are in the popping/crusting stage. And to look at the rash on a person in that stage of Shingles is a bit freaky. The first time I got them, I was still in bar-crusing mode, so people would literally stay on the other side of the bar from me so the wind wouldn't blow them on them or something (ridiculous) - either that, or they wanted to go get their grandkids so I could give them the Chicken Pox so they could get it over with.

So when I was debating whether or not to go to church this past Sunday (the rash was barely visible by then thanks to the meds), I was prepared to tell people I couldn't be hugged due to my Shingles. My husband wouldn't let me do it! He said it would freak people out. I know when they are contagious and I know what to do. I'm not stupid. I did left-facing hugs only even though I was not in contagious stage and to appease my husband, I didn't mention it to people, which made me feel like I had something to hide. You know me, I hide little! Look at the picture I posted of Friday's rash! No makeup, hair pushed behind the ears. Not many people do that. Pretty much just me and my new friend Chris Dean, who will post anything funny about her own traumas, like me ;0) Love ya, girl!

Well, life goes on and the chores of the household beckon. So I must get outta this chair and do something. Hope you are all Shingle free for all of your lives! But if not, you can surely tell me all about it and I will sympathize!

28 comments:

  1. Thous hast inspired me to seeketh the vaccine. And so it is scheduled, and should cometh to pass this very week. Hope you get better soon,

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  2. My mother is getting one too. I wish it would help me, but it won't since I've already had them. Pooh! No vaccine available when I first had them...

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  3. Oh my gosh, Cindy, it sounds horrible!! Sure glad you can laugh about it!

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  4. I would be such a sourpuss if I couldn't laugh at everything!

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  5. Hi Cindy, correct me if I'm wrong, if you've had chicken pox as a child you are susceptible to shingles, correct? That's why when I hear people say they want their kids to get chicken pox to get it over with it gets me so mad! Why would anyone want to expose their child to a painful, devastating illness that can then rear its ugly head years later. There is a vaccine for chicken pox. I never had chicken pox as a child, and as an adult I got the vaccine. I believe they give the vaccine automatically now to kids because I'm pretty sure my daughter had it. There is also a vaccine for shingles but I believe it is only for those over 60. Now, on a different note - I can totally relate to you when it comes to fighting with doctors. I told you how hard it was to diagnose my condition. I actually, correctly self-diagnosed myself using internet research, but so many specialists, even after examining me, disagreed with me. I was made to feel stupid, childish, and treated like an insecure little baby. I learned that to advocate for yourself with doctors, you never, never dare show them any emotion - even though you may want to cry, scream and rip out their hair. They dismiss patients who are weepy and have little empathy for them. The experience made me very down on doctors. Another problem - one you can relate to - my condition rarely appeared in someone so young. More often than not, it happened to people over 65 - or in women who had multiple vaginal births - I did not fit into either category so doctors didn't even consider my diagnosis. Oh well, I could go on and on. Perhaps I'll write a blog about it some day, but I think I'm still too angry, I don't think the blog would come out well written - I should probably wait a few more years. In any event - please, please know you have my love and empathy and I hope you get better very very soon!! xo - Lisa

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  6. Lisa, here is a pretty good explanation I found on giving/getting it: "Shingles is contagious and can be spread from an affected person to babies, children, or adults who have not had chickenpox. But instead of developing shingles, these people develop chickenpox. Once they have had chickenpox, people cannot catch shingles (or contract the virus) from someone else. Once infected, however, people have the potential to develop shingles later in life."


    However, I need to point out that I was vaccinated for Chicken Pox before getting them and my daughter also got vaccinated (twice inadvertently) and still got the Pox twice anyway too!

    And I had chickenpox as a child, so I am screwed no matter what. When I look at pictures of people with severe cases, my heart aches for them! Wow, they can really get bad. I thank God I know when mine will be that bad because if you get on the medicines (I have 3) within two days of the start of the rash, it lessens every aspect a lot, even the post-herpetic neuralgia. It's hard to get in to a doctor that fast.
    I knew I was in trouble when I went to the regular doctor this time because the nurse said, "You probably know more about this than I do," and because the doctor's office had previously told me that I could only be seen by the dermatologist for Shingles. I suffered through that time because I couldn't get in, so that's why I jumped at the chance when they offered the visit with my normal doc this time, but it was a fight I was afraid I might lose. I was so happy to come out the victor on Friday with all my prescriptions!


    Thanks for the support and at least I can still type my little fingers off about it and be jolly-ish! LOL! I'm so exhausted, I couldn't even walk the dogs today and it winded me just to walk around the house. Which reminds me, it's time to hit the hay.


    XO, Lisa!

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  7. Hi Cindy, OMG, I feel so bad for you! Both my children had the chicken pox within a week of one another ages 18 mos. and 3 yo. It was horrible. Now, I can only hope none of us develop the shingles later. It sounds so painful. I guess, it's always a reminder to appreciate our health when we have it 100%
    Just something to make you smile. I think I dislocated my shoulder yesterday. I can hardly move it while typing. I tripped on a curb in the grocery store parking lot yesterday, skinned my hand, knee and landed hard on my shoulder. How embarassing. All the contents of my purse fell out too, because it was unzipped. Then the fall seemed to jar me into some sad state and I had tears on and off all day. Maybe I was just feeling sorry for myself. But do you think trauma to your health triggers emotions that are lurking below the surface? I might have to go in to the doc. this am and get a sling, no shit.

    I hope you're feeling better very soon!

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  8. Becky Green AaronsonJune 19, 2012 at 7:58 AM

    Hope you feel better soon, Cindy. I suffered through it once too in my 30's--even though I had chicken pox as a kid. Is it triggered by stress? Whatever the case, no fun at all.

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  9. I am so NOT looking forward to this. I had the pox as a kid, in the summertime no less, so no days off of school even! My dad had one bout of shingles and it drove him nuts. Well, not literally. He did maintain his sanity, but the itch & pain were pretty bad - as you are well aware! I really feel for you, and I fear for my own future. Hate it when you know it's coming but you don't know when and there's nothing to do to stop it.
    Your doctor needs to swallow her pride a bit and own up to her bad assumption. Not cool at all.

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  10. O...M... G... And I thought my recurring rash was bad. You have my sympathy. From one rashy chick to another.

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  11. Cindy -- So sorry you are feeling crappy! I have nominated you for a LIebster Award, something I see you are already familiar with! :) Stop by my blog for a visit and keep smiling!! http://cherylfassett.wordpress.com/

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  12. Oh no, Lisa! That's terrible! And yes, one trauma can totally open up the emotional doors. It's like a floodgate opens up your whole being sometimes and all that has been overwhelming you pours out. Hope you feel better soon too! I wouldn't know what to do if I couldn't type, but the telltale pre-Shingles pains I had were in my shoulder and arm (mouse arm), too, so I sympathize. I thought I might be getting carpal tunnel and all I could think was, "What, NOW? Now that I decide to become a serious writer? Really?" I am glad it's just Shingles because I know they'll heal eventually.

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  13. Yes, stress can be one of the triggers and I have had some. I think physical stress can also cause it, although it doesn't absolutely say that. Sorry you had them and hope you are one of the lucky ones who only gets them once!

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  14. I thought I was due an apology, but I am a forgiving soul, so I will let it slide. It is not normal for someone young and otherwise healthy to get Shingles and they usually see them in elderly people. They are awful and I hope you do not get them. Get the vaccine when you're old enough and if you ever think you have them, get into the doc and get on meds immediately. It helps.

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  15. Well, thanks so much, Cheryl! That makes a sick girl feel better! I will be giving you a shout-out in my next Woo-Hoo which will probably be next Wednesday instead of tomorrow since I have a beginning of summer post scheduled to hit tomorrow. I will put you in my "Awards Bestowed" page right now though :0) Thanks again!

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  16. OMG I know, we have to type! I'm feeling a little better with the help of advil...thx for the encouragement.

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  17. Arghhh! My daughter's boyfriend's father just had them. I never had chicken pox as a kid and have only had half the immunization round, so yes, I was a bit worried about getting them. How long do they last?

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  18. It varies greatly. I've had short bouts that were tolerable (2 weeks-ish and were a lot like the Poison Ivy) but then the first one was long and horrible (3-5 weeks) with the additional post-herpetic neuralgia afterwards, lasting months. That first bout was the worst! They can get even far more severe when you're older though. I am using this time being worse as a kick in the pants jump-start for my diet and exercise regimen I've let slip. It makes a difference when you take care of your body well in the first place and I've not paid close enough attention to my health lately, getting enough sleep, etc. I hope you don't ever get them, but if you do, get to the dermatologist ASAP! Getting on the meds within two days helps.

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  19. Thank God you knew enough to stand up for yourself. I'm so glad my kids had the chicken pox vaccine. Although I respect a parent's right to make decisions for their children, I CANNOT understand why some are reluctant to vaccinate against chicken pox.


    Feel better soon!


    Cindy


    http://www.cynthiadwyer.com

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  20. Even with vaccine, my daughter and I both have had pox. So you just never know, I guess. I felt better and actually got some work done this afternoon finally. Hoping the meds are really kicking it ;)

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  21. Great post and uber-informative! (WAY better than the stupid commercials they've been running lately!) And you're right, once the virus is in your system it's there forever... and there does seem to be some correlation between the virus and autoimmune disorders. *sigh*
    Oh, and thanks for the shout-out! *grin*

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  22. KCLAnderson (Karen)June 20, 2012 at 2:14 PM

    Oh my! I feel for you!! I haven't had shingles but am petrified that I will get them. I have the type of herpes that gives me cold sores on my lips (and have had it since early childhood). And I never had chicken pox. Hopefully, with the help of my naturopath, I can keep my immune system strong and never get them. In fact, I think I may talk to her about how to prevent them. Back when I first started seeing her she gave me an unconventional treatment (butyrate complex) for all the herpes-like viruses...I suppose I could do it again. I hope you're feeling back to your normal self soon!

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  23. Sounds like you are on the ball! It is great that you are thinking about prevention. I knew nothing about them and was so unprepared and shocked the first time. Thought I would just die! Now I'm better informed and I know what they are when they come on, so it's a relief. Right now, the fatigue is the worst part. I hate feeling drained. Too much to do in life!

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  24. Your post is a bit scary. I had a shingle on the back of my head, two years ago, when only 57. I had always thought it was something that attacked older people. I kept an ice pack on my sore bump for a week because I was away from my doctor and I had to supervise a group of kids at vacation bible school. When I finally got to my dr, the pain had gone away and there was only a small bump. The dr feathered my hair and said I had shingles. Fortunately it was a light case, and the dr said I wouldn't need a shingles shot now (hubby had just had his) nor would I get shingles again. Your story seems to contradict that.

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  25. Leave it to me to be one of the weird cases, but no, I am not the only one I've known to get them multiple times and get them at under age 50. I hope you don't get them again. Sounds like your case was very mild! There usually is not just one bump, but several and the rash at least.

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