Calling Epiglottitis A Bitch Is A Vast Understatement

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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.

Who Am I?

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Am I more than the sum of my symptoms or less?  It started with menopause, the entire disintegration of my body. All of a sudden my thyroid became underactive and I thought I had achieved a state of false bliss. Just add Synthroid and  I will be able to eat AND lose weight at the same time” Well, as it turned out, not exactly. The image of every foodie fat girl eating AND shedding pounds like my hairy mutt sheds her fur was not accurate, I was disappointed. I was  in pain all the time, my favorite phrase: “I feel like I have the flu but without the fever.”  I ended up not just having an underactive thyroid but I had Hashimoto’s Thyroiditis, an auto immune disease of the thyroid, basically my own cells were attacking me. My internist nodded her head and said “there’s really nothing more I can do” and as I lay there sobbing, undressed in the exam room, she clicked on her brown high-heeled shoes turned swiftly and marched out of the room.

One doctor led to another and another all with differing points of view. The second Rheumatologist  diagnosed me with Fibromyalgia but still, my aches and pains continued.

The third hot-shot doctor specialized in RA and Auto-Immune Diseases. “Fibromyalgia” he said, “that’s nothing but a lazy diagnosis.” We treat the auto-immune disease, straight and simple. Of course, not that simple. He started me on Methotrexate which helped but landed me in the hospital for my second bout of Eppiglottitis and possible lung damage. I develped a 24/7 cough, asthma and breathing difficulties, the pain from the Epiglottitis was excruciating. Several prescriptions and an inhaler later I came home.

They stopped the Methotrexate and he put me on Cellcept which worked well, with the exception of intense intestinal distress that forced me to stay in the house (and close to the bathroom for 8 entire weeks). I complained after four weeks and hot-shot ignored me and said “stay on it another four weeks” and like a fool I listened.

If I was rich I would go to the Mayo Clinic but having had no income in a year, that rules that out. One day at a time? How about one moment at a time? Today I stayed in bed, napping and trying to calm my internal self. Part of me wants to kick and scream and fight, the other part is too tired and weak to even imagine it. Along with the aforementioned symptoms I also have narrow-angled glaucoma which is very serious, interstitial cystitis, TMJ and a connective tissue disorder as well as a balance issue. Who have I become? When did all all these symptoms become me?

My latest blood tests come back next week and with it, I hope, will be some helpful information. I am tired of being tired, sick of being sick. I feel horrible when I fall and my two sweet children and darling husband come racing up the stairs to see what happened….again.

Help me, fix me, try me, define me.

Swallowing Razor Blades

I was hospitalized a little more than a week ago for having Epiglottitis, otherwise known as my throat is KILLING me, it’s as if I had been swallowing razor blades, one after another. It truly was the worst pain I have ever had, birthing quintuplets naturally would have been less painful. Since I was released I have been on numerous medications to help (help-NOT) with my symptoms, especially the ulcers on my epiglottis, near my vocal chords.

I missed a scheduled trip to Washington D.C. with my family because the thought of moving, anywhere, was out of the question. I was sleeping a lot, aching all over and generally very miserable. I did go on the trip to Boston with my family where I stated that “I will be going there even if it’s on a stretcher.” Luckily it didn’t get to that but I was feeling terrible still and kept having to put my head down for fear of passing out. I couldn’t do any of the walking since I was so tired and out of breath; I was also coughing continuously. Bought over the counter products, DayQuil, NyQuil, In-BetweenQuil, Robittusin cough syrup and enough throat lozenges to feed an entire country for a week. Nothing helped.

Today, after all the doctors who took last week off for Spring Break returned, I had to, once again, go in to see them. We started with an ENT who scoped (that is such an unpleasant procedure) a camera through my nose to look at my throat. Progress, that seemed like it had healed.  Why was I coughing incessantly? He didn’t know and referred me to my Internist. Basically, she had blood work done, a chest X-ray and an EKG. She then told me to see a Pulmonologist later in the afternoon. After a brief nap, we trudged along to another office to see the Pulmonologist who gave me an assortment of (more) medication and a follow up visit tomorrow for extensive breathing tests. He also alluded to a CAT scan in the future if the cough doesn’t go away in two weeks. Not something to look forward to. He fears that the all too powerful methotrexate given to me for my auto-immune disease (Hashimoto’s Thyroiditis) may possibly have damaged my lungs. Just great.

Wednesday, I have to go in to see the previously-known-as-the-guru-Dr.-in-the-city. I’m sure he will try to make me take methotrexate again.  Or perhaps he will put me on Prednisone (again). These rating scales of pain are basically useless. At least all the people I know who have chronic pain and fatigue think that they are. When I was in the hospital with my throat pain, they asked me my pain scale from one to ten, ten being the worst pain ever. I gave them eleven as my answer. Enough said.

I’ve been on Prednisone, Plaquannel, Synthroid and a slew of other medications. I hate being on all these different medications especially when I still feel like crap, worse than crap. It’s time now for the new nasal spray, cough syrup and anti-acids prescribed today. My poor body, my poor soul. We are both spiraling downwards quickly in the haze of pain and emotional spirit.

Someone please catch me before I fall.

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.

Honey, Honey?

Friday, 3/19/2010  3:58 PM

I’ve just crawled back into bed, clothes off, night-shirt on, bronchitis as my diagnosis. I have taken the third dose of Arithromyacin but my body feels achy and my throat feels sore. Very sore. Burning- steak -knife- to -the -throat -sore.  There are many types of pain but throat pain, to me, is one of the worst. It must remind me of my childhood when I suffered continuously with sore throats, strep and tonsilitis, all the time.  So much that when I graduated from college I had to have my tonsils taken out.   To say it was not pretty is an extreme understatement.  After the tonsillectomy the pain was the worst pain I had ever experienced; THAT pain was worse than childbirth. I remember living back home at my parents apartment, in my old room,  moaning from pain. My mother fed me too much codeine because it hurt her to see me in so much pain. I remember hallucinating that I was talking to angels. My father literally threatened to go to the Doctor’s house with a baseball bat. The purest form of parental love.

I also have an auto-immune disease whose aches feel different from the ones I am experiencing now. I am 53 but feel older, I am 53 but think I look younger. After much work and determination, I lost 20 pounds and it is nice to see my waist line indentation. I am an hourglass, once again, green eyes dancing, brown hair in a side ponytail, wearing necklaces.

I heard from several people who suggested I should eat a teaspoon of raw honey each morning to improve my auto-immune disease. I started yesterday, somewhat suspiciously, looking at the mayonnaise-like substance. I ate the teaspoon and it did indeed taste much better than the lard it looked like. I am still waiting for the energy to come. Given that I am on antibiotics maybe a little patience would do me good. Actually, patience would always do me good…..

I had a big bowl of juicy blueberries for lunch, some organic honey -lemon soothing drops for my throat, a Nyquil tablet and a nap. For dinner I had comfort food: tomato soup with mashed Saltine crackers and a piece of cheese that melted slowly into long strands of stringy goodness. For dessert I had a brand new favorite, the tropical ice-pops from Trader Joe’s, that had little pieces of frozen fruit inside them, they were amazingly pretty to look at, tasted heavenly and numbed my throat momentarily.

I only slept seven hours because I was in so much pain that I kept waking up. I am about to eat another teaspoon of honey, watch Fiddler On The Roof and see the sunshine bounce off my bedroom window, while I am inside. Only the cool breeze from the open window reminds me that it really is lovely outside, just about Spring, and that I am missing an amazing day. There’s always tomorrow.