Eppiglottitis: Do I Dare Ask How We Fared?

Fellow eppiglottitis sufferers, you KNOW what I am talking about, don’t you?   How WAS your Winter? I know it’s still July but I am already on high alert just anticipating the cooler temperatures approaching.

This murderess, inexplicable disease comes quickly from one day to another landing at any time, in one very specific place, beyond the throat, with no warning whatsoever.  All the patients are sure of is at least ten to fourteen days of hell and the most excruciating pain we have ever felt. Am I wrong?

Acute catarrhal pharyngitis. The oropharynx is...I just crossed my fingers so I will not jinx anybody, including MYSELF. Many people have written and asked me about this disease and while I have always followed up on each e-mail, now I want to ask how everyone did this Winter? I narrowly escaped it this year but I’m sure it’s on my To Do: List for this Fall. It’s hard to believe that you would be lucky twice in a row.

Does anyone care to share?  All “jinxes” are off and if they are on, I will be the one to get it because I initiated this damn blog. We share the same, horrifying experience, we feel the same excruciating pain and for all the pills to swallow and liquid to gargle it takes a long time to even feel the beginning of recovery.

pillsAs I mentioned in my earlier blog, “Calling Eppiglottitis A Bitch Is A Vast Understatement” the first time it happened, my ENT scoped me and said out loud “How the hell did you get THAT?” My answer, in my head, was “isn’t that your job, Bozo?” Which of course I didn’t say (basically because it was too painful to talk.)

Worst. Pain. Ever. Childbirth is like a little cramp compared to this misery of hell. There are no pain pills that can keep up. Literally, none. Be thankful if you can still breathe and get yourself to the Emergency Room ASAP.

It starts as a simple, little sore throat and then our alarm bells are on alert…we are always aware that this could be an invitation to the deadly Eppiglottitis instead of just a regular old-fashioned cold. If a sore throat lasts more than a few days/ gets progressively worse, I haul my behind to the ENT where he will insert a tube (sorry) through my nose to look at the usually ulcerated gap beyond where the throat lies.

Swallowing is torture. Pure torture. I did read of a trick that, while it may sound disgusting, has a definite advantage: don’t swallow. How, you ask? Lie on your stomach and have a spit bowl. Next time I have it I am definitely trying that. What could be worse than that razor blade swallow. Nothing.

Also, get your behind to an infectious disease specialist, I have never been but I plan to go the next time this horrible disease stops by to visit.

Person washing his hands

I hope you have a wonderful  rest of the summer and do keep in touch with me in the Fall and of course in the dreaded Winter. Keep washing your hands as much as you can (it will make YOU feel better) but no matter what you will get through it if it should creep up on you again. Trust me, I know.

 

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Eppiglottitis: Dear Innocent Souls, YES, You Can Get It Again. (I Should Know) 4/2013

English: Title: Torture Chamber of the Inquisi...

English: Title: Torture Chamber of the Inquisition. From ‘A Complete History of the Inquisition’, Westminster, London 1736 (Photo credit: Wikipedia)

The plight of those of us who have suffered from Eppiglottitis, an illnesses/virus/ torture/infection has gotten way with too much pain already and NOT just in the United States. People from many countries around the world share the pain. I know that for sure. There are searches for Epiglottitis on my blog, always. Today there was a search, from some poor, innocent soul who asked: “Eppiglottitis, is it possible to get it twice?” Oh, dear one, I just want to give you a great big hug and plant gentle kisses on the top of your sweet, innocent head.

Yes, you can get it again. In my blog I have written about the two times I had Eppiglottitis and how I wanted to beg, borrow or steal major pain killers from hospitals, doctors or become a gangster and hang out in the streets to score illegal drugs (okay not really ). People really do not understand the amount of pain that this  illness brings and frankly, unless your ENT (Ear, Nose and Throat, Doctor) has had it, they don’t know a thing about how painful it is either. Not for one second. The only people who know are the people who have had it or are going through it now. Do I smell the beginning of a support group?

What does it feel like? It’s like taking a scalding steak knife and searing your huge, ugly, raw open wound, repeatedly (obviously with no anaesthesia) over and over again. It is impossible to swallow because the pain is so excruciating but really what choice do we have? The last time I had it I was on a cocktail of medicines, steroids, a throat rinse, antibiotics and whatever else they threw at me but what I needed was a morphine drip and a sleeping medicine that lasted a solid week. I wish.

When I couldn’t stand the pain anymore I dragged my body to the medical group, to the ENT offices before they opened and BEGGED for someone to see me. I was in so much pain that I was crying and I looked like all hell, pale, distraught, helpless and hopeless. This is not something I would normally ever do. I was so grateful that they let me go sit in the office chair, who knows, maybe they were afraid of me. I WAS afraid of me. When the doctor came in, he scoped me, which requires putting a tiny tube through your nose to see beyond your throat. He literally gasped and said “How the hell did you get THAT?” I was not in the mood for rhetorical questions nor was I feeling combative. I just wanted him to tell me how on earth to get rid of this demon that had taken up residence in my body.

Apparently it’s not common to get and very difficult to get rid of, I live in fear of getting it again and I assure you, every Fall I think about it when the weather turns chilly although I am sure I could get it at anytime. Another doctor suggested that if I get it again to go see an Infectious Disease Doctor in addition to my ENT. Great, that’s what we need, to waste more time in doctor’s offices waiting to be treated. I’d rather check into Rehab so I could become a drug addict for pain relief until it healed.

I’m here for support, questions and comments. I am not a medical doctor, no, I’m better. I’m a patient who knows exactly what you are going through. Ask away or just complain, it’s not anything I haven’t complained about already.

Begging For A Diagnosis

Sad Little Girl

Sad Little Girl (Photo credit: Wikipedia)

I found myself in the waiting room of my Ear, Nose and Throat Specialist this afternoon actually praying for an inner ear infection. Yes, that’s what I said. I was praying for a diagnosis that would be fixed with a quick supply of an antibiotic, preferably a Z-pack. Done! No such luck. My ears have hurt me on and off for weeks. This was the second time I had been to the doctor in two months. Not only did my ears hurt but my entire face, under my eyes, my head, my forehead, my entire body was aching, as if I had the flu but I knew I didn’t.

Please, I groaned to myself, let me have an ear infection, or a throat infection, even eppiglottis, the dreaded disease that I have received so much mail about when I posted a blog about it. (* Calling Eppiglottitis A Bitch Is A Vast Understatement) Even that I could take if I have a diagnosis but no, my throat was fine, my ears were “perfect” I felt like I was five years old, alone, horrible and to the doctor I looked “good.” I’ve felt worse and worse and I don’t know why. The doctor told me it was probably my Fibromyalgia/TMJ……Nothing I didn’t know already. “Gee, I’m sorry,” he said “wish I could do more.” He patted me on my shoulder as he stared at my breasts and promised to call in a prescription strength type of Advil (which, he never did.)

My only hope is that I have my physical next week with my Internist ( a woman who does not even BELIEVE in Fibromyalgia) but at least she can run some blood tests and send them to my Rheumatologist. This is SO FRUSTRATING. Everyone just wants to throw different drugs at me and I don’t really want to take them. Take this, says the Rheumatologist and this, says the ENT,  but you need energy so take this, and there is nothing for pain so just live with it. I am tired of living with it and I can’t discuss this with my sister (or even have her READ THIS ENTRY) because it is not a safe topic for us. We can talk about many things, this is not one of them. Unless she can give me concrete examples of what exactly she would like me to try and how I can pay for it.

All I know is that I have been diagnosed with Fibromyalgia for six years now and after it got better, it has now gotten worse. Does Fibromyalgia get worse? Is this something new? Can I live like this? Is it the weather? An anxiety attack? I feel so vulnerable and so lousy that I cried in the waiting room from feeling so poorly.  I noticed a father with his teenage daughter; I missed my father who would have known how to kid me like that father did. I missed mine so desperately. Do emotions come to play in all of this? I think it’s probably all of the above and none of it is pretty. Not for me, not today, not until I feel better. I’m complaining, in writing. I should just shut up.

*https://hibernationnow.wordpress.com/2011/02/03/calling-epiglo…understatement

My Fellow Epiglottitis Peeps- A Follow Up

throat diagram

Image via Wikipedia

When I first had my two bouts with Epiglottitis (OUCH)  no one had ever  heard of it. Even my ENT said and I quote: “how the hell did you get that?”  If I could have spoken in spite of the pain I may have said ” How do I know? You’re the doctor.” But speaking, swallowing, breathing was pure torture and being in such intense pain makes you less than quick with a comeback. When I first posted “Calling Epiglottitis A Bitch Is A Vast Understatement” I wrote it for myself. Why did I have to get this pain? But, if it’s something unusual, it softly calls my name.

When I had Epiglottitis I told people it was the worst pain I had ever had, that childbirth was a cinch in comparison. When my two awful experiences had finally passed I asked every Dr. and medical person, if I could SOMEHOW prevent this from happening again. The answer was an unequivical “NO.” I scheduled an appointment with my internist just to discuss this and begged, pleaded and cried for the vaccine that is given to children. Another “NO.”  She said it was for infants only. That seemed drastically unfair. After all, if those babies could have it why couldn’t iI have it? Give me 100 times the dose if you want, anything not to have to go through horrific, burning, stabbing, knife-in-the-back-of-the-throat pain again.

How does one get it? What is it? Apparently, it’s a virus. I know, when there is something doctors don’t know for sure they call it a virus but apparently this is one and a nasty one at that. It could be related to the Herpes Simplex virus, I was told, but maybe not…..It is frustrating and painful and so far this year (fingers crossed) I didn’t get it but I do live in constant fear of getting it again. No joke.

Did anyone get it this year? I  hope you didn’t or if you did that it was a mild case (oh, who am I kidding there is no such thing as a mild case, it’s outright torture.) My ENT treated it with Prednisone, Valtrex and some special rinse, (and maybe something else, not sure) it helped…..after what seemed like an eternity.  It will not go away on its own, beg for pain medication.

For those of you who wrote back to me with your comments, thanks. We helped each other. Never before had I heard of this bolt of lightning in the back-end of the throat, and hearing from you made me feel better, validated. Unbelievably, my blog post “Calling Epiglottis A Bitch Is A Mild Understatement” gets so many hits on my blog consistently. As you know, I blog about everything: food, Fibromyalgia, feelings, fun, Hashimoto’s Thyroiditis, Chronic Pain,TV, music, food, children, parents, grief, love and loathing. I blog when I am happy or sad, about funny things, family (they are not too happy when I write about them) my dog and dessert. But, this post about Epiglottitis constantly and consistently gets hits and I’m wondering why. Do more people have it now? Did it become an epidemic? I thought I was the only one in the world that had it, (clearing my throat) twice.

Here’s to you, my Epiglottitis Peeps, If anyone has any updates or insights, let me know. Or if you have had it recently, I am here to commiserate. I wish I could offer you a magic cure, I wish I could offer myself a magic cure  but none exist. I’m here, though, to share your pain. Believe me, I understand it completely!

p.s. One important tip: if you have had this once, and feel a bad sore throat coming on, go directly to an ENT and not an Internist. My ENT gave me that advice, don’t wait around a week, like I did, waiting for it to get better. Get it scoped, diagnosed and treated before it gets any worse.

Calling Epiglottitis A Bitch Is A Vast Understatement

Visible epiglottis at the back of the throat o...

Image via Wikipedia

I have had epiglottitis twice; it is an ulcerated part of your epiglottis, below your throat, hidden in thieves. It is the worst pain I have ever had and I’ve had it two years in a row. Nobody knows what causes it, they think it’s a viral infection. As much as I have BEGGED for answers on how to prevent from getting it again, there are no answers. The doctors shake their heads kindly but have no information.

The first time I had it the ENT ( Ear, Nose,Throat Specialist) scoped me through my nose and saw it he literally said “How the hell did you get that?” Those were not comforting words to hear. I don’t know how I got it and I don’t know how I got it again. I just knew that this was the worst pain I have ever had. Childbirth was a breeze compared to this long, incredibly painful illness.

Has anyone out there ever have this monster of an illness? I’d be interested in knowing. The most my doctor could do was promise me to give me pain medication. If I could, I would prefer being asleep for the ten days that I have it. It makes sore throats seem like a cute tickle in your mouth. It feels like a hot, serrated knife butchering you every time you have to swallow.

Don’t come again, you mean and evil illness. I’ve had enough.

What Did I Know About Pain?

I knew nothing about pain, real pain, until  a few days ago. When, for the second time I (presumably) have an ulcerated epiglottis. I CANNOT SPEAK OR SWALLOW !!!  I have had plenty of aches and pain and tiredness from Hashimoto’s Thyroiditis and from Fibromyalgia but those pale in comparison to what I am feeling right now. After a night in the hospital, even with painkillers, the pain from below my throat is searing and intense, hot black steak knives through butter and steak combined. I am not a dramatist, what’s worse is that I am also not a pessimist. I have had this pain once before, last year, and thought it was an isolated incidence. Apparently, it wasn’t. Am I supposed to think this is a coincidence? I’ve been told, probably not. Not news I can handle very easily. Has anyone else had this type of pain before?

I go back to the ENT (Ear, Nose and Throat Doctor) this morning, it hurts so much I can’t even cry because crying will make it worse and there doesn’t seem to be anything worse than the pain I have had for a few days. I am on a plethora of drugs, Prednisone, a strong anti-biotic, pain killers that do not touch the pain, and a variety of other medicines. At the moment, I need a miracle, or at least a focused, caring Doctor who will get involved.

I called my Guru Dr,  the one in the City who is the only Dr. I have (past tense) believed in and relied on before. I should have known, he is not something special,  just something special in his field. This isn’t his job, his area of expertise and he needs “details” apparently the one’s I described are not good enough. The one’s that my Internist will provide him (she misdiagnosed this for the second time and has no idea about my case) will be the call he will accept. He will not reply to a call from the ENT that I am seeing today at 10:30. Beyond my intense physical pain, only I would feel emotional pain at this Dr. that I thought was also a caring individual. By definition of Dr., I should have known better but I never seem to learn. Ever. When I showed improvement in HIS area of expertise (auto-immune diseases) I was greeted with “you look great!!!”, “you lost weight” and a couple of hand holdings and pats in his office. He was so pleased, but apparently more with himself and his prowess than with me. Or perhaps, that is to them, one and the same thing.

Why can’t I just toughen up and not believe emotionally in people? What is wrong with my character that at my ripe old age of 53 I haven’t learned this lesson yet? It’s one I still keep repeating so obviously it is not ingrained into my character. Is the solution to be cynical and sarcastic with everyone? That doesn’t seem right either. Maybe there is no right or wrong.

I believe in myself, truly, but with this I need help. I thought 2010 was going to be the year of ME, a newly improved, positive me after having had 2 prior years of hell. That was not hell, this is. There is a phrase “I’ve been through Hell and back” I can only add and “Back to Hell again.” Am I feeling sorry for myself? Yes, I am. Do I have the right? I believe so.