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.

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Lost And Found

Tulips from Keukenhof Gardens, Lisle, Holland.

Image via Wikipedia

I haven’t been writing at all and I don’t know why. It’s always a bad sign if I don’t write. Now, I need to question myself, in public, about what’s going on. The past week has been filled with pain, intensely painful legs out of nowhere with nothing to help dissipate the pain. Tylenol, Advil, Aleve, even Tramadol which I have been taking twice a day. Of course, I thought, I jinxed myself when I wrote that I was “lucky”that my pain was less intense than some.  Past tense. Now I have a new pain that I didn’t think was possible and I don’t know where it came from or why it still exists. That new pain jolted me to a new reality and I hate it.

I’m bothered that my sister is my sister and not a friend I would pick and that the best friend I had picked has completely lost herself,  in her marriage and her children and has not resurfaced for years. The stress in the house has become unbearable at times, with my husband unemployed and a Junior and Senior in High School. They have essays to write, exams to study for, colleges to apply to, jobs, appointments, homework, studying. We all feel the stress around us, inside us, despite of us. My children and husband are what keep me going; I not only love these three people, I adore them. They make me laugh, they make me smile and when I was about to cry today, they knew it long before I did.

Yesterday I laughed so hard I had a stomach ache, my kids put up a fake unicorn tapestry to prank their father for going to the Cloisters. After dinner with our friend Janis from California we all ate chocolate, one with a spice called cholula. We laughed and gasped through the pain and I downed two glasses of Arnold Palmer lite iced tea and lemonade afterwards. I went to bed smiling, the laughter being a delightful and unexpected present.

The holidays are almost upon us and I start thinking of my dad, who passed away 8 or 9 years ago. Why is it that I can never remember the year he died? Not being good with numbers has nothing to do with it, it’s a mental and emotional block that I can’t seem to get over. My father was the buffer in the family, the diplomat, the peace-maker. Without him the rest of the family is a triangle of raw emotions.  I was the one who lost the person who understood me the most and who thought identically like me. There is a gaping hole in our family and as everyone who has lost someone they loved knows, there is nothing to heal that pain. It’s like a festering, open wound and once in a while someone tosses in a cup of salt every now and again. There is before and there is after. Your whole world changes forever.

My birthday is coming up and as much as I used to love my birthday this year it feels like a dull ache. I don’t care that I am another year older, I was never concerned with age. Whether I am 53 or 54 doesn’t mean much to me at all. I don’t hide my age and I don’t erase my wrinkled forehead. These fine lines come from experience, both good and bad, they are here to stay. Earlier today I was thinking of my “bucket list”.  The first thing that came to mind was a tour of the tulip season in Holland and snorkeling in  some Caribbean Island so I could escape the long, cold, snowy winters.

Life is short, I am trying to make it fun. Every day is a gift and I should appreciate it but sometimes I get swept away by all the negativity and I need to pull myself up and out of that empty hole in the musty, brown earth, inch by painstaking inch. I think I have found my voice again so after I dig myself out, I will be facing the sun.

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.