Talking Out Loud: Feeling Sorry For Myself

My throat is scratchy, every time I swallow it’s like a science experiment. I feel cold even though I am under three blankets. Oh wait, I shouldn’t be surprised, we’re back from our short vacation in the sun.

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We are anticipating a snowstorm with wind and ice and I’m sure the clouds can just feel me smoldering with anger and resentment, like a fire just beginning to spread quickly.

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The Universe can feel that I don’t want to live here anymore, the Winters are too tough for my aches and pain, Fibromyalgia has never been my friend but it is becoming my worst enemy.

I hate having to confirm a lunch date with my best friend in the morning although she totally understands.  Will I be okay for getting up and out of bed? Can I dress myself and drive my car and meet her over salads sipping strong, strong coffee? I have NO energy and NO short-term memory. That is excruciatingly embarrassing to me, that is the worst part.

I will know that only tomorrow morning and even that is iffy. I can deal with this chronic pain disease much more easily in the Spring, Summer, even Fall but Winter? Oh, Winter is the devil of all evil, to me. He’s that bratty, bad boy, the one every grade school had who tried to make other kids’ lives unbearable, the bad boy brat that succeeded in torturing a grade.

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Way back, when I was a child, we never had a “No Bullying Allowed” rule. We just had the town bully and everyone knew who he was. I can picture his face so easily in my mind as he grabbed my winter hat and threw it around the bus to taunt me.

Now, we are all grown-up, the bullies, the kids, those of us who care for our grown-up children and parents and dogs. We face problems every single day. The stress and tension are finally catching up with me.

I don’t smile much anymore. It’s tough enough to get out of my warm, comfortable bed with my dog lying beside me. Sometimes, I choose not to get out of bed. I’m okay with that.

Please, I don’t need platitudes or well wishes, I just need circumstances to change. I need a sign, I’ve been patient. Until now.

Yes, I will ask the Angels for help.

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I will ask anyone for help. But, so far, nothing has worked. I’m so very tired. I want to curl up in my bed until I see that it is Spring. Things will change in the Spring, for the better. We will make it change, not now, not during the bleak, gray darkness of Winter.

The new us, starts in the Spring, 2015.

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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.

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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.

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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.

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?

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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

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?

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.

As 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.

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: Asked and Answered

Throat Diagram (Photo credit: Wikipedia)

To my fellow Eppiglottis Sufferers,

Here are some answers to questions you have asked me:

1) YES you CAN get Eppiglottitis AGAIN and I’m sorry. ( I have had it twice )

2) There is no way to prevent it. If you found a way, please contact me immediately.

3) Yes, it causes unbearable pain.

4) I  worry as soon as my throat tickles much less hurts.

5) “Calling Eppiglottitis A Bitch Is A Vast Understatement” is my most sought after and popular blog post.

6) No, I never had my throat/breathing problems/occur  but if you have trouble breathing,

go to the Emergency Room or call for an ambulance. Do NOT take chances.

7) No, you cannot “SEE IT” looking down your throat. It is below the throat and a doctor will have to “scope you.”

(don’t ask.) Okay, fine, he or she will have to thread a tube through your nose so the doctor can see what is happening down there.

The first time I had it my ENT (Ear, Nose and Throat Specialist) said “How the hell did you get THAT?” Gee, thanks, Doc.

8) Yes, I too, live in constant fear of getting it again.

9) Other doctors? I have been told if I get it again (UGH) to see an Infectious Disease Specialist.

10) It hurts so MUCH because it is incredibly painful to swallow and you have to swallow, lying on your stomach and spitting into a bowl is an idea but not a solution.

11) I feel your pain and your anxiety and I hope this will be an Eppiglottitis free year for us all.

12) Yes, I do have Fibromyalgia and an auto-immune disease (Hashimoto’s Thyroiditis) but apparently there is NO connection.

13) and Yes, if there is interest, I will consider starting a group on-line.

Feel free to keep those questions coming and to share your own miserable experiences, believe me I can relate to them all!

GOOD LUCK FOR A PAIN FREE WINTER!

Eppiglottitis 2: The Movie

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.

Calling Epiglottitis A Bitch Is A Vast Understatement

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.

Who Am I?

Image by stevec77 via Flickr

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.