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: 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.

 

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.