The Big Swallow

Dear Dr. Batman.

Every night my mouth gets dry and I try to convince myself that it is from the allergy pill I have taken. In the morning I can barely part my lips and my whole mouth feels like it is full of cotton, as if I had been at the dentist all night getting painful injections, mouth puffed up and out, red cheeks pulsating with pain.

I swallow carefully, a few times in a row, even though there is nothing to swallow. I reach for the tall glass of clear, cold water with lemon that stands next to me on the wooden bed stand and take a few tentative sips.

Yes, my mouth is dry, check. It is a bit scratchy, check. Can I call it an official sore throat? No. Is it “The Dreaded Eppiglottitis?” Thank God, no or at least not yet. I rue the day that happens to me again, for the third time (or is it the fourth?) My fellow eppiglottitis sufferers know what I mean, they know EXACTLY what I mean; it’s not a pain that you can ever forget. When we get it, we get it BAD, there is no way of getting it any other way. It doesn’t come in light, medium or strong degrees, it only comes in “devastating and horrific.” Believe me, childbirth is nothing compared to this.

Apparently, there is a vaccine that is given to children that could prevent this from ever happening to adults again but no one will give it to us grown-ups. I’ve asked “why?” a bunch of times but apparently “it’s not used for this purpose.” There are a million things used for different purposes that help other conditions not used for the original intentions but help others with different maladies. Why no one will look into this, I HAVE NO IDEA.

Acute catarrhal pharyngitis. The oropharynx is...

I was put on methotrexate, a drug for cancer, when I didn’t have cancer. I had Fibromyalgia and my hot-shot brainiac crazy as all hell Rheumatologist prescribed it to me. It made me feel great, best drug I was on. Unfortunately, it had bad side effects so I couldn’t stay on it but boy, did it help. He thought outside the box and while I couldn’t take the drug, the man was a genius. A crazy, arrogant genius but still, a genius.

Epiglottitis is a bitch, there’s no way around that. It’s a sure-fire way to get the worst possibile pain and a speedy pass to the Emergency Room if you feel your throat swelling up and you have trouble breathing. I don’t think it’s too much to ask for SOME CREATIVE doctors to at least look into the reasons why we CAN’T have the vaccine that is given regularly to babies.

People, doctors, do not want to go out of their comfort zones, even if it is to save people an enormous amount of pain. A medical friend in England asked me why the American doctors were so hesitant to do this, I had no answer. To her, there was an illness and a cure, it made sense. It makes sense to me too. What happened to “First do no harm?” I guess that is antiquated or is now synonymous with “It’s not in my job description.”

That really stinks. Help us, someone, please.

There is only one pediatrician that I remember from when my adult children were little that I can imagine going out of his way to even think about this. He recently returned from helping sick people in Africa. He’s THAT kind of nice guy. Please, Dr. Batman from MKMG?

If anyone, I know you would try or at least think about it, It would mean so much to so many people. Please, will you just read this letter? I know you will do at least that much, I wouldn’t bother to send it to anyone else.

You’ve always been kind to everyone, moms, dads and especially children. Just take a quick look.

Thanks in advance.

Eppiglottitis Mom

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Eppiglottitis 2: The Movie

English: Diagram of the Human Throat for the T...

English: Diagram of the Human Throat for the Throat article. (Photo credit: Wikipedia)

It’s the season when Summer is ending and you know you have a few precious days left of warm weather, light clothing and a little bit of sunshine left. As soon as those little Italian “prune” plums as we call them, appear in supermarkets, we know, summer is over. I’ve seen large candy packs lined up like soldiers at the drugstore and supermarkets for Halloween for for the past two months.  I’m waiting any day now for the Thanksgiving decorations and the holiday decorations: Christmas lights and tinsel and Chanukah menorahs and candles to be placed. In my family the fight over Thanksgiving has been going on for months.

In preparation for the Fall and Winter months, I decided to get ready by buying a large container of “home-made” chicken soup.  I make a mean chicken soup, let me tell you, better than theirs by far, but it was 93 degrees out and I couldn’t stand the thought of making it in the in my hot kitchen. I just wanted to be ready. Prepared for what, you ask? Well, obviously you have NOT suffered from the pain and misery of the dreaded disease Eppiglottitis which I have had several times and I know, my faithful readers from all over the world have too.

I am the Queen of Eppiglottitis.

Describing it as hell on earth does not give you an adequate picture. In my first Eppigottitis post called” Callling Eppiglottitis A Bitch Is A Vast Understatement” I heard from people all over the world, each one relieved to find another person that had it this miserable nightmare.I believe I described it as a sharp steak knife plunging down my throat repeatedly. It is the disease that has searing pain constantly underneath your throat for at least ten days and if you haven’t suffocated yourself yet by not being able to breathe, you have to take 3 different types of medicine to slowly get back on the road of recovery. The problem is, once you have the disease, any little cold, or any allergy that starts with a sore throat throws you into a tailspin of fear.

Like right about now….Is it allergies? I sure hope so. It is allergy season. I’ll give it the weekend. Do I go to the ENT? Does he really have to shove a tube up my nostril again to see the flap below my throat? Isn’t there any other way? Nope, there isn’t. People who have this horrible illness go through this every single time there is a mere tickle in their throat. We should start our own support group.

One reader had an interesting suggestion that I will pass on to you: because you CANNOT swallow he/she laid on their stomach and used a bucket to spit. I have to hand it to them, that is pure genius and would be a wonderful opening scene. Kudos.

Ok, fine there really isn’t a move about Eppiglottitis or book about …but there should be…..

Best wishes for a pain-free season.

Eppiglottitis, Esophagus, Hernia? HELP!

Cirugìa de hiato, HERNIA PARA ESOFAGICA

Cirugìa de hiato, HERNIA PARA ESOFAGICA (Photo credit: Antonio@GDL)

Last week I went for the dreaded barium test (forgive me if I gag just thinking about it) although it wasn’t as bad as I thought it would be. I imagined slugging  the entire thick, chalky mess down in two or three large gulps and finishing it but that was not the case. Luckily it was more like take two sips and swallow. This type was not even that thick. It’s not that I would order it in a restaurant but it was manageable. I highly recommend the radiologist who was soothing and comforting and told me “it wasn’t a big deal.” Thank you.

When I finished Dr. Radiologist came out and told me I had a hernia in my esophagus. Huh? Yes I had a hernia in my esophagus which was fairly common and probably could account for me swallowing the wrong way, quite often and coughing a lot. But, oh, my epiglottitis followers, what automatically came to mind??? There has to be a connection between the eppiglottitis and esophagus hernia, no? It seemed genius to me. Could this be a clue in solving the mysteriously painful illness that we know so much about? Of course I thought I was brilliant and could tell my people (YOU, my fellow eppiglottitis sufferers)  that we could prevent eppiglottits in the future but sadly that is not the case as far as I know.

I have an appointment scheduled with my ENT (ear, nose and throat specialist) on Monday and yes, I will beg him for a correlation even though I’m pretty sure there isn’t one. I just wanted to give all of us some hope. If there is ANY I will post the results on Monday, I PROMISE. Wouldn’t you think there would be a connection? I mean it does sound nutty enough.

Leave it to me to have the weird diagnosis, but believe me I am NOT complaining. With all the testing that they did, I am gloriously happy that the only thing wrong with me is this hernia. After losing forty pounds, having digestive issues (really bad digestive issues) and looking gaunt and pale as a ghost, I can cheerfully deal with this. I’m having a colonoscopy in a few weeks, maybe an endoscopy is needed as well? I have no idea. But if there is any hope of a connection between the dreaded eppiglottitis and this hernia in my esophagus, I want to be the first to tell you. And, you know I will. Let’s keep the faith although even I know the odds are against us. Let’s wish each other LUCK. We need it.

Haiku Heights – Shroud

Shrouded

Shrouded (Photo credit: Mountain Hermit)

In secret black webs

evil thoughts bake with bright blood

hidden plans, cookies?

***

Black gooey shrines

mask the real terror of life,

Every day moments.

***

A white gown of lace

now fitted to perfection

her stark red lipstick.

***

Misty, cloudy fog

squeezed me away from my Love

Twists my throat, deeply.

***

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.