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

Epppiglottitis, No Cure? MY Ass

Give. Me. The. Shot. The Vaccine. I want it. I want it NOW. No, not in a few minutes, not in a month or two. I can’t wait another second. Find someone, someone with authority to approve it. I can’t beg or grovel anymore. I know the kids’ vaccination exists, I know you have it in your back pediatric room. Stick it to me. In my arm or in my behind, just do it. Trust me, I will not cry, unless the tears are of relief.

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The only pediatrician I know to have a kind and open heart is Dr. Batman, he thinks outside the box, he cares. No, he was not my children’s pediatrician at the big Medical Group not far from NYC but that’s okay. We called him Batman when my children were little, he had all kinds of Batman gear and toys in his office, every time he saw us he smiled. Even when my daughter, wearing her sweet pink dress, white tights and black shiny shoes kicked him in his shin, he was nice. I was mortified.

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It was one of those horrific mother moments. I wanted to move to another country or enroll my daughter in juvenile hall but I made her write an apology note at home and more importantly I marched her back in and made her give it to him. Lesson learned.

After my first essay called “CALLING EPPIGLOTTITIS IS A BITCH IS A VAST UNDERSTATEMENT” (EARLIER ON THIS BLOG)

A reader wrote to me recently and said:” Lastly, since many posters seem to be getting this horrible illness more than once, go get vaccinated! Vaccinations started somewhere between 1988 and 1990. Prior to that time, most cases of epiglottitis were pediatric, but now it is more often found in adults (albeit still rare) who were born before vaccinations started.”

I’m starting a revolution, a Vaccinate Eppiglottitis revoution.  WHY can’t we have it. “Because” is NOT an answer. “Because it’s just for kids does NOT HELP.

English: Acute epiglottitis; Lateral view in X-ray imaging (Photo credit: Wikipedia)

Spell it out. Why are you torturing so many thousands of people every day and leaving them at risk of dying? Of their throats swelling up, unable to breathe, causing them the worst pain that they have ever had? Trust me, giving birth was like a walk in the park compared to this.

I wouldn’t wish this on my worst enemy, well, maybe one or two.

We deserve an answer. All of us who have had Eppiglottitis deserve an answer and “no” and “Cuz” is not acceptable anymore. Why can’t we use the children’s vaccination in some way to help us adults that are suffering, many times over, with this life threatening illness?

Please find out we need to know, doctors and hospitals and The American Medical Association needs to know. We deserve an answer. It’s our right. Plus, we are begging and we are at your mercy. Ok?

 

Looking For Dr. Lisa Sanders, Dr. House, The Mayo Clinic?

Dear Dr. Lisa Sanders, Dr. House, New York Times, The Mayo Clinic or any doctor, active or retired that wants to save a life and help a really nice, frustrated, sick woman.  If you are looking for just the money, trust me, you are not the doctor, if you are looking to make someone who is desperate, happier, even if there is no answer, you’re my person. My medical person.  (if you watch Gray’s Anatomy you would understand this, if not ask someone who does.)

I am desperately seeking a miracle, yes, a doctor or a team of doctors who will put all my different symptoms together (for the last eight years) and try, just try, to figure out the root cause. Believe, I have an idea but not the credentials. I don’t have the knowledge or the education, just an inner voice. That leaves me with nothing. If there is nothing that comes out of it, I UNDERSTAND but I will know, someone really tried.

I have an internist who gives me 7-8 minutes and two specialists who are absolutely amazing but they send me to different specialists and it is too much for me to handle and take in. You understand, right?

The Mayo Clinic in Rochester. (Photo credit: Wikipedia)

 

 

 

 

 

 

I know the Mayo Clinic would take me! I have about six doctors who would gratefully write a letter to get me inside the Mayo Clinic and off their backs. Do they have the equivalent of financial aid?  I probably would be the most interesting and mystifying patient they have seen in a long time. Trust me, I’m not bragging. Living in my body and brain is pure hell.

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I asked, okay, begged, two of my nicest specialists today, my cardiologist and my nephrologist if they could assign me to a medical student to take on my case, you know the way they charmingly do in Gray’s Anatomy. They both shook their head within a second and laughed. Sure, they would like to help but they can’t. Of course if I had A LOT of money (which I don’t at all) I could hire a private concierge doctor and maybe that would help me, yet break us financially and there’s no guarantee. Honestly, I never heard the word “concierge doctor” in my life. As for random medical students to assign them to my case alone, they laughed out loud. Gray’s Anatomy is truly a fictional fantasy. I want to be someone’s person. (Ask a friend.)

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I’ve thought of the Mayo Clinic, Johns Hopkins and I need to do more research on that this week. At today’s nephrologist’s appointment he literally ( a 58-year-old) referred me to a pediatrician. Yes, it is not a typo. Supposedly, there a doctor who specializes in low blood pressure and syncope who sees children and on occasion, if begged, a woman of thirty, helps. My doctor is going to talk to him and plead with him to see me. P.S. he said no  but referred me to a pediatric neurologist,  (what?)

DO YOU SEE WHY I NEED HELP?

He also suggested a fat biopsy. A FAT BIOPSY? What on earth is that? I googled it and it really made no sense to me plus it’s always a bad idea when I research something, a very bad idea. He also recommended Hormone Replacement Therapy. My jaw dropped. He said what?

Yep, the dreaded  (my own personal view) of adding more medicine to my body?

I also have Eppiglottitis, and have had this three times already. Figure that one out. I have posted many articles about it, it’s deathly pain, its sword-like plunge  beneath your throat. Many readers have read this article and many ask me questions. I know there is a vaccine to prevent this for infants, I’ve asked several doctors about giving it to me. There answer is a confused look on their faces and they say “we can’t.” Why, I pursue, “because it’s for children.” Take a chance, do some research, you can’t even try?? Have you ever had that horrific pain? I also fall down from low blood pressure (we think) and randomly shake.

I have more symptoms but I don’t want to scare you away!

Does anyone have any connections? I’m realistic, not stupid. Please forward to anyone you may know at The New York Times or Dr. Lisa Sanders or The Mayo Clinic.

Please.

Thank you in advance.

 

 

 

 

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.

 

An Open Letter To Ellen Degeneres

English: Ellen DeGeneres in 2009. (Photo credit: Wikipedia)

Dear Ellen, I hope you don’t mind me addressing this to you, I just need someone to listen, someone who cares about other people. I thought you were the right person even though I’m sure you will NEVER see it. That’s okay. With the exception of a few best friends I’ve learned the hard way that other people are too busy in their own lives to care.

I DON’T WANT ANYTHING FROM YOU.

I guess I’m trying to think and talk out loud here. I’m lost, and have no idea what happened to me, I have no idea who I am either though I used to know so clearly.

Have I just become a mountain of symptoms trying to blend themselves together in a jig saw puzzle where no piece fits? I’ve made changes, I stay away from negative people, I try to be as kind as possible and pay it forward when I can but still trouble follows me like a black cloud.

Believe me, I am NOT asking for pity. I don’t want anyone’s pity, if I want pity I give it to myself, underneath my three layers of blankets, with the door shut tight, my dog lying next to me on my bed. I don’t want pep talks either, encouraging me that it “is just a phase.” This phase is my life and I have accepted it, I just don’t understand it.  When I try to fight against the “down” period, people tell me not to do that and to be positive. Everything is a mixed message.

You have the natural talent to bring joy to others just by being yourself, I love that.

Right now, I am a huge collection of symptoms that I don’t mind sharing, I’m 57, there are people who are 97 that are healthier than I am. From head to toe: narrow angled glaucoma (eyes) many, MANY painful treatments in my eyes to try to correct that, but its a life long condition, hearing loss (had stapedectomy-operation for ears) the dreaded Eppiglottitis, I don’t wish on my worst enemy, I shiver at the thought, (open, gaping wounds below the throat,) horrific TMJ, shooting pains from my jaw/ear to my brain causing me to scream with agony caused by any random thing and some other facial myalgia the doctors threw at me) which I don’t even count. I have IBS, Fibromyalgia, Fatigue, No energy, Chronic muscle and joint pain, Fibro Fog (not remembering something someone said a minute ago.) General Anxiety Disorder, Hashimoto’s Thyroiditis (an auto immune disease of the thyroid) foot pain, wait, the most recent one and most deadly,  Kidney Failure, Stage 3? (No one ever told me about Stage one or two) I think I’ll stop here.

Now for the social things, I can’t work because of the above illnesses, my husband was laid off for the second time and still is not working. We have two fabulous children who are attending two different state universities and a dog (our second) I rescued from a shelter.

I want you to know that we ARE thankful for our blessings, we truly are. Writing this down makes me realize that even more.Thank you for listening, sometimes it is good to write it down and look at it on paper.

But, am I jinxed? Is this what they call “going through a rough patch?” Whenever I feel I’ve reached bottom something else happens. Do you only know where the bottom is when you finally start climbing up slowly? Isn’t it possible to stay down here forever?

I guess I just have to accept what is going on now, breathe slowly in and out and believe that something good will happen. Someday.

Please don’t “like” this post. I don’t.

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.

Begging For A Diagnosis

Sad Little Girl (Photo credit: Wikipedia)

I found myself in the waiting room of my Ear, Nose and Throat Specialist this afternoon actually praying for an inner ear infection. Yes, that’s what I said. I was praying for a diagnosis that would be fixed with a quick supply of an antibiotic, preferably a Z-pack. Done! No such luck. My ears have hurt me on and off for weeks. This was the second time I had been to the doctor in two months. Not only did my ears hurt but my entire face, under my eyes, my head, my forehead, my entire body was aching, as if I had the flu but I knew I didn’t.

Please, I groaned to myself, let me have an ear infection, or a throat infection, even eppiglottis, the dreaded disease that I have received so much mail about when I posted a blog about it. (* Calling Eppiglottitis A Bitch Is A Vast Understatement) Even that I could take if I have a diagnosis but no, my throat was fine, my ears were “perfect” I felt like I was five years old, alone, horrible and to the doctor I looked “good.” I’ve felt worse and worse and I don’t know why. The doctor told me it was probably my Fibromyalgia/TMJ……Nothing I didn’t know already. “Gee, I’m sorry,” he said “wish I could do more.” He patted me on my shoulder as he stared at my breasts and promised to call in a prescription strength type of Advil (which, he never did.)

My only hope is that I have my physical next week with my Internist ( a woman who does not even BELIEVE in Fibromyalgia) but at least she can run some blood tests and send them to my Rheumatologist. This is SO FRUSTRATING. Everyone just wants to throw different drugs at me and I don’t really want to take them. Take this, says the Rheumatologist and this, says the ENT,  but you need energy so take this, and there is nothing for pain so just live with it. I am tired of living with it and I can’t discuss this with my sister (or even have her READ THIS ENTRY) because it is not a safe topic for us. We can talk about many things, this is not one of them. Unless she can give me concrete examples of what exactly she would like me to try and how I can pay for it.

All I know is that I have been diagnosed with Fibromyalgia for six years now and after it got better, it has now gotten worse. Does Fibromyalgia get worse? Is this something new? Can I live like this? Is it the weather? An anxiety attack? I feel so vulnerable and so lousy that I cried in the waiting room from feeling so poorly.  I noticed a father with his teenage daughter; I missed my father who would have known how to kid me like that father did. I missed mine so desperately. Do emotions come to play in all of this? I think it’s probably all of the above and none of it is pretty. Not for me, not today, not until I feel better. I’m complaining, in writing. I should just shut up.

*https://hibernationnow.wordpress.com/2011/02/03/calling-epiglo…understatement

Tis The Season For Eppiglottitis To Be A Bitch, Again

Oh Lordy, Lordy, Lordy, please let this be a false alarm. My throat IS sore, not tragically sore as in I swallowed a steak knife the last time I WAS hospitalized with Eppiglottitis so I do have a chance,  but just seeing the increase on my old blog “Calling Eppiglottitis  A Bitch Is A Vast Understatement” rise in numbers,  my chances of getting it again are on the rise too. No really. I feel the first signs and I am not happy.

Poor people, write to me right away and tell me if you too have the stabber-sicker -than- death -disease now. Or is it just panic setting in for all of us. This is the first time in a year that I have felt poorly and while I have lost my voice I feel the need to have someone stand nearby with some calming chemical that might or might not be legal near me…..just in case. Last time at one appointment my lovely internist promised me morphine if this should happen to me again. “Drugs,” she promised, “Heavy, duty drugs.” I trust her but I haven’t even gone to see her yet. I feel like I’m playing roulette here. It’s the only time when I feel like a “playa.” Uh-Huh.

Besides, trying to get through to the big medical practice where I go on a Monday morning in the winter is I N S A N E. It really is, you could die and get buried and have a service before they pick up the phone…and I’m not saying they are lazy at all. They are just really, really busy and everyone is trying to call to make that same day appointment, press 2.  As for me, I tried, I really tried and held on for as long as I could manage and then I just hung up. It wasn’t worth it anymore and I was so tired that I gave up and took a really long nap even though there were workers on the roof making essentially painful noises like jack hammering but it was better than being on hold and having some fake secretary voice tell me to “be patient, someone will be answering your call soon.”  That never happened.

I’m holding on for another day, I’m sipping huge quantities of Progresso chicken and dumpling soup and drinking cranberry-pomegranate juice with semi-crushed ice cubes from a blue and white straw and hoping against hope that all this misery will go away in a day or two and it won’t get worse. That for once I can be a “normal” patient and tomorrow I will be all better. It would be nice if the kink in my neck will work itself out and that all my symptoms will go away with no need for a Z-pack or any other kind of antibiotics or cough medicine/ medication. Yeah right.

Tis the season for colds and the flu. Tis the season I always want to move, someplace warm. I mean it. Really, I do.

*****

Next day:

Laryngitis, coughing all night, sore throat still, I made the call, this time it only took me 30 minute to get through. Going in at 4pm. Will post later.

Went to the Dr. and while I saw a Z pack in my future, she saw an Rx for Augmentin in mine. Augmentin. For Bronchitis.

Blech

It’s going to be a really long ten days.

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.