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.

 

Living With Pain Vs. Pain For The First Time.

Wisdom tooth1 (Photo credit: Wikipedia)

My 19-year-old daughter had her lower two wisdom teeth removed this morning. They gave her a little laughing gas while we kept her company until her surgeon appeared (20 minutes later) and then he turned on the laughing gas way up high. After, he sedated her so she fell asleep and when she awakened she was the most giggly girl I have seen since she was about five. It was delightful to see a glimpse of my grown-up daughter back in time when her defenses hadn’t evolved, her moods were just plain happiness and silliness and she looked at her brother and me lovingly.

Back at home she is still high as a kite but experiences no pain, she refuses to even try to go to sleep even though as her mom, I see she her blue eyes are closing and that she is so tired.  Being her mom I was a nervous wreck last night and I told my son sleepily when he came to wake me up: “they should give anxiety sedation to the moms, not to the teenagers.” Anyone reading this that’s a mom will know exactly what I’m talking about, right?

Having Fibromyalgia, I know what Pain feels like but I’ve known it many times. I’ve had the “dreaded” Eppiglottitis two or three times that is more painful than childbirth and I dread it constantly. Childbirth is no picnic but that’s a different pain. At the end you know that you will get a reward: your new baby so it doesn’t really count as much and it’s a pain you mostly forget. Notice I said mostly. I’ve had broken ankles and broken wrists, I’ve had my tonsils out and my gallbladder removed so I have known pain pretty much early on and often.

I had fallen asleep on my bed for a few minutes today when my daughter woke me up her painful grunts and her cranky face. “It hurts” she whined and I knew that it must. She hadn’t slept and the sedation had all but left her body and she hurt. I brought her back to her bed, removed the cotton from her mouth, got her some raspberry yogurt as requested because she was “hungry” and afterwards helped her to swallow a pain medication that her doctor prescribed.

By the time the medication worked (a good 25 minutes) she moaned and groaned and complained about the pain. I felt the pain as much as she did if not more. Parents, you know… Then I realized something and I asked her “Is this the first time you’ve ever felt pain?” She said yes, quite honestly. The scowl etched on her face forming deep, unhappy lines. I thought to myself, “oh my God, maybe she will have more understanding about what I go through with Fibromyalgia, intense pain, most of the time.”

It seemed like I had always known pain but when I thought back I hadn’t known it until I was a young teenager and tripped over myself in my parent’s living room, causing my ankle to swell up to a deep purple ball and going for an X-ray for confirmation that yes, indeed it was broken. My first cast of many, I was 15, I remember and I was in high school.

It’s not likely that my daughter will be more sympathetic to my pain or even understand it, kids forget things so quickly but at least I know, that she’s never had a frame of reference. Maybe now she will.

Plinky Prompt: Escape!

• 

  English: Civil Rights March on Washington, D.C. closeup view of vocalists Joan Baez and Bob Dylan., 08/28/1963 Español: Bob Dylan con Joan Baez en la Marcha por los Derechos Civiles en Washington, D.C. (1963) Italiano: Joan Baez e Bob Dylan durante la marcia per i diritti civili a Washington, 28 agosto 1963 Polski: Bob Dylan i Joan Baez w 1963 Deutsch: Joan Baez und Bob Dylan beim Marsch auf Washington am 28. August 1963 (Photo credit: Wikipedia)

  

  Live at the Troubadour (Carole King and James Taylor) (Photo credit: Wikipedia)

  Describe your ultimate escape plan (and tell us what you’re escaping from). See all answers

• Edit answer |
• April 12, 2013 by hibernationnow

• Escape!

• I’m escaping from STRESS and I’m taking my husband with me. I can’t possibly hang on much longer with my twisted, achy stomach which might very well be an ulcer or worse, losing weight, and being tired and upset. I’m watching my husband feeling down and defeated and unhappy too. I’m taking my husband, my best friend, whose stress level I share and intensify, out of here.He needs a new, good job PRONTO, in the computer field (something about Software and Engineers and Project Management) where people are not mean but decent and NICE. It’s been too hard, waiting for the pink slip which is coming except they don’t even GIVE you a pink slip anymore. Now, they just take you into a room, avoid your eyes and mutter about lay-offs. The unemployment drill.
  Let’s sell the house, then tell our kids in college, take the nutty dog with us (she’s always up for an adventure) and rent a van, or small mobile home. We can become the baby boomer hippies we never were. Let’s go down to the basics, we don’t need all this “stuff” that you, okay WE cling to. Imagine, having no agenda, no plans, no watches. We’d be living on money from the things we sold. Our college kids might even have to work (Gasp, what’s that??) Let’s go cross-country (you never believed me but I meant it.) Maybe somewhere we can settle down and open a breakfast place or lunch, maybe ice cream?
  Let’s go now, before we change our minds. We won’t sell the CD’s, because the one thing we need, wherever we are, is music. Music makes us happy and we need to sing loudly out the windows with joy. Our dog, Lexi, hanging out the window having a blast. We will sing all the oldies, Simon and Garfunkel, James Taylor, Crosby, Stills, Nash and Young, Carole King, Bob Dylan, Joan Baez….just to name a few. No stress? Sounds like heaven to me.

How I Stay Healthy??????

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Give Us A Break……

There’s a fundamental mistake here: you are assuming I am healthy and I’m not. Along with thousands upon thousands of other patients I have a chronic pain disease and an auto-immune disease (not to mention others: IBS, narrow angled glaucoma, interstitial cystitis, painful and swollen joints, flare ups and….oh, is that too much? Because I could continue and I could also go blind instantly but that’s another post altogether.

First off, I am really not complaining just commenting and venting. “It is what it is” and it could be a lot worse: pain is not life threatening so I am grateful for that. TRULY. However, Fibromyalgia and other chronic pain disorders ARE extremely painful (and no it is NOT in our minds.) That is totally insulting. Also, there is little to relieve the pain, at best, and certainly no cure. Live with it? Not comforting. If this affected more men than women you bet there would be more research and no tiptoeing around about pain medication. The latest information frenzy that has all chronic pain patients up in arms (and my mother who saw a show on TV!) is that doctors and the media now are becoming increasingly hysterical about dispensing pain medication to THOSE OF US WHO ARE IN PAIN.

To me, it’s idiotic. I have a Doctor who writes prescriptions for Vicodin like they are gummy bears, lots of gummy bears, but when I tell him I have taken one and it doesn’t seem to help the pain, he insists it’s the only pain reliever he can dispense. Does that make any sense to you? Because, Vicodin itself is highly addictive and he writes prescriptions for them all the time YET he won’t write a prescription for half the amount for something different, like, I don’t know, Tylenol with Codeine? What am I missing here? A different class of pain killers? I am not swallowing pain killers for a high, I have tried Vicodin (one pill) on two separate occasions when I was in dire pain. It. Did. Not. Work.

I’m beginning to feel like the chronic pain community should an old-fashioned revolution. All the patients talk about it but I don’t think all of us have spoken directly to the doctors about it. I have but it does no good. Do you know why other patients are reluctant to be honest and I don’t blame them? Because we have to deal with the raised eyebrow, and the ‘are you a junkie quizzical smirk.’ I want to find a Doctor that HAS Fibromyalgia and see what they say!!

Do you think if we have addictive personalities we will misuse codeine and not Vicodin? I KNOW I don’t have an addictive personality, believe me I would have had plenty of opportunities to have one but it’s just not something I would do, want to do or will ever do. Shouldn’t doctors be able to differentiate patients from junkies?

Think about the Hippocratic (Hypocritical?) Oath that says: “First, Do No Harm.” You are causing harm refusing to treat illnesses that are incredibly painful. How about a different warning label? USE ONLY WHEN IN DIRE PAIN. That works! I don’t know anyone personally who would abuse it but I am sure there is a percentage of people who would abuse anything. Don’t punish us, for them. I certainly wouldn’t want to take anything every day if I didn’t need it. My doctor had me on two different medications to prevent pain that didn’t work and I ASKED if I could stop them, he hesitated and I then convinced him and stopped. I WANTED to use as little medication as possible. Frustrating.

In terms of exercise I walk slowly to try to get exercise and if I had the extra thousands of dollars I would probably buy a membership for a gym that has an indoor pool so I could swim but that’s money a lot of us don’t have lying around. My special diet? I usually eat healthy meals, chicken,veggies, salad, pasta, red meat a couple of times every month or two. However, my special chronic pain diet, for comfort since there is no pain relief usually involves Cadbury Creme Eggs, Yodels and Egg Salad Sandwiches. Sometimes comfort, even though it is not a pain reliever, might just make you feel a little bit better emotionally since no one is trying to help us physically.

The Emotional And Physical A, B, C’s of Fibromyalgia

Fibromyalgia or any other illness combines physical symptoms AND emotional ones. This is a blog post that is not original. I just borrowed it from friends because that’s what friends are for! Here are mine:

A- Anxious, Aches, Achy, Anxiety

B- Bloated, Blue

C-Cramps in feet, legs, hands…etc, CURE??????? (not).

D-Depressed at times, Denial, Disapointment to others?

E-Embarrassed, (no) energy

F- Fatigue, Fibro Fog, Forgetful, Fat, FRUSTRATED, Fearful

G-Grateful it’s not life threatening

H-Hands that are swollen and ache, Hurt

I-Incomplete

J-Joint pain, joyous for a good (day, hour, minute)

K- klutz, I trip, I fall and I am uncoordinated

L-Lame, Limitations

M-Medicine, moody at times

N-Neuropathy

O-Oh what a pain in the ass this really is for all of us.

P- Pissed off, Pain

Q- (no clue or rather, qlue)

R-Realistic

S-Sad, Suffering, Savella

T- Tired

U-Unsure

V- Very tired, very frustrated, very much want carrot cake

W-Worn out, weary

X- Xanax for anxiety (the same answer everyone else gave!!!)

Y- Y? because I love you……

Z-zzzzzz’s for sleeping a lot

The Map To Nowhere Fast

Image via Wikipedia

I have a weird feeling of unrest and stress, slimy blue- green and flourescent orange winding its way around my brain is how I picture it, how I feel it. No soothing colors of white and yellow and beige. Fake colors, unnatural.  I frown more than I smile and as hard as I am trying to focus on the positive it’s not easy. There is so much going on in my life that it’s hard to focus. I don’t think it’s just me though, I think it’s a lot of people.  It’s a feeling, not a good one, somewhere between the roads of anxious and depressed, stopping at weary.

There are natural disasters all over the world and I am sure we all feel, not only heartbroken for other people, but scared. There is too much sinewy stuff whirling around and no happy place to settle. What happened to my “happy place” images? Why am I only seeing the rain battering the purple flowers instead of the blooming of the flowers alone.

There is tension inside my house, we are in “the sandwich generation” that I used to read about. It isn’t fun, it’s scary. The “baby boomers” who have restless teenagers and aging parents who are alone or ill or depressed. I am that “baby boomer” now except I have the added affliction of my own “chronic pain.” Fibromyalgia and Hashimoto’s Thyroiditis do not do me any favors, I walk along slowly, painfully, I stumble through different medications and expectations. Very low expectations.

I also have narrow-angled glaucoma which is a dangerous disease or as one unfriendly opthalmologist put it “you could go blind in an instant.” Quite a bedside manner, don’t you think? Needless to say, I stopped going to him. It’s funny that I barely write about this condition, maybe it’s pure, frigid fear. Maybe there is only so much pain I can handle. My brain and eyes get hammered, with laser shocks, every few months by a doctor that I once believed was very good. I don’t think so anymore. “In twenty years of practicing, I’ve never had a patient whose eyes kept closing up like yours do.”  Every time I go to the city he lasers my eyes again, because the hole he drilled into me has closed. He does this procedure either in his office or in the hospital with no pain relief; imagine barbed wire going through your eyes and brain, quickly, twenty or thirty times in a row. The eye drop he casually puts in gives me incredibly painful headaches (migraines?) I do know that the pain I feel is barbaric, no pain medications, no anesthesia, no break. Over and over again; fast and furious.

The gray, dreary day does not help me since I feel overwrought and unfocused. I am dealing with both chronic pain, (Fibromyalgia, Hashimoto’s Thyroiditis) and new back pain that feels like my back bent and broke itself during sleep like a twisted pretzel you find in any mall. I am trying to accept my life for what it is, both bad and good, often simultaneously. Change is in the air like a dog-sniffing a new scent, it’s just hard to predict when and where things will happen.

I read an article in the NY Times today about a young couple with a young daughter. Each parent has cancer. That, is a problem I say to myself, not the dreary workings of an often too-emotional, anxious and pain- filled mind. I am so sorry Nathan and Elisa. You and your baby have my prayers because perspective is the greatest gift of all. I will speak no more.

say narrow-angled glaucoma 5x fast on pain meds

Image via Wikipedia

my head is aching, laser like thunder striking inside my brain and down the right side of my face in a fast repetitive motion. don’t move, there, up, left, stay still. darts are being thrown directly into my eye by this rapid fire machine gun. a special hateful drop is given to me at the end for my shattered eye, throwing me, head first, down the crooked, chipped stairs straight to a migraine in progress.  doctor had to cut iris, no anasthesia and it was right near the nerves of my eye. lucky us fibromyalagia patients come prepared, had one old pain pill in my crusty, gray bag that has too many confusing pockets. the medicine did nothing. i have been suffering for too long,  in twenty years, my dr. boasts he has never had a patient like me before. i feel like i should at least win a prize or break down and cry uncontrollably. maybe both.

i am finally home in bed now but my right eye is glued shut and i am not allowed to open this eye tonight. i am cold and have winter blankets trying to protect me from pain and chills but they don’t do a great job, yet they are trying so hard. blame me, i cry, blame me. i am the arbiter of all diseases chronic and unknown and erratic, unusual, the  “rarely happens to……” it is not surprising that i don’t i feel special; tonight i have plenty of pity. problems with my eyes, ears, tmj, chronic pain, joint pain, foot pain, all the time. struggling not to become one with the symptoms but i feel like i’m wrestling with myself in thick, mixture of quicksand and mud. once in a while i want to just sink deep and let my breath come out slowly and simply float on top. i am tired of fighting, i’m tired of the pain.  i just want the pain concerto to cease playing. tonight i feel pain on my pain. if my head wasn’t above the blankets i would hide beneath them, though crying is difficult with just one eye.

who is this young stranger i ask from three feet and thirty years back. the one that used to shimmy in tight jeans and black leotards and confidence amid conversations of the psyche and e.e.cummings and the book review section of the ny times. i was a traveling girl until they clipped our wings; but most of all i was a dreamer.

my dog is sleeping peacefully on my feet. i woke up at 4 am today, perhaps with nerves but also with an incredibly optimistic attitude. optimism kicked me again in the face like a feisty pony named speed. i didn’t see the pain coming, speed kicked me from behind and sent me flying to the ground bruising every bone. every already aching bone and muscle.

i have all these strange, out of the ordinary afflictions but special is not something i feel. now i feel sad and sulky and in miserable pain. music which usually calms me grates on my raw nerves. stop complaining, i admonish, this is not life-threatening but it is painful and lonely as all hell. i miss my husband’s reassuring voice and soft, gentle hugs. i know i can survive on my own, always knew that, but it is nicer when he is there beside me, and not on a business trip, gently reaching for my hand. i miss normalcy if i even remember what that feels like.

i look forward to slow down the grumbling monster that is the pain in my head and shooting  down half my face. why am i not normal. why are there bizarre afflictions attracted to me like bees to golden honey. i am too tired to shoo them away because i have been robbed of energy. so they stay, circling me, viscious black buzzards landing only for their meal and my life.

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.

The Beauty Of My Fibromyalgia

Image by freefotouk via Flickr

My husband came home from town and told me that he heard an update about a mutual friend; that she was at the end of her life.  She has ALS, (formerly called Lou Gehrig’s disease) a horrible, disease that affects thousands of people every year. I felt terrible for her and her family and know how hard that disease is for everybody.  I pictured her in her wheelchair with her beautifully spun white hair coiled behind her in an old-fashioned bun, the bun that my grandmother in her nineties used to wear every day; held together with old-fashioned black bobby pins. There was one difference, the woman in this story is not in her nineties, not even close, she is 43.

I have Fibromyalgia and Hashimoto’s Thyroiditis and before you write me letters about how pain is all equal and that pain is pain and we have our right to our pain I will tell you this: the stripping of your body, one by one and of all your faculties, is something I would not trade for and neither would you. The last vestige of communication this woman, this YOUNG woman had been struggling was to try to write something with her twisted hand on a computer generated machine. Fibromyalgia pain IS pain. I know I have pain, I understand it and I can communicate it, I can’t solve it. When there is nothing that helps me feel better, at least I can verbalize this, at least I can try to focus on a pretty picture of strong red berries on a simple branch. When I clutch the banister to be able to go up and down stairs, I am mostly doing it myself. If I can’t and need a hand, I will ask for it and accept it and will be able to have the dignity to say “Thank You.” I can ask my daughter about her day or my husband’s first day of work or my son’s admission to colleges. I am able to do that and am thankful for it.

My husband, the most patient man on earth, gets irritated and annoyed with me when he asks me questions about the type of pain I am in. He is direct, like a prosecutor: “is it muscular?” is it in your joints?”  “does it stab, burn, tingle, come in waves?”  “is it sharp, is it dull, does the pain move around?” I’ve always been vague in my answers about how I feel physically because I am the type of person who can’t verbalize my symptoms well. Fibromyalgia is defined as having pain all over and that is what I have. Is it muscular? Yes, Is it your joints? Yes, It is all over and hard to differentiate from one Doctor’s appointment to another, Yes. We also have Fibro Fog, our endearing term for forgetfulness, makes us forget how things were yesterday compared with today.

Fibromyalgia changes every day, sometimes every hour; there were times when I was sure I had a really bad virus but my Doctor just told me they are “flare-ups.” My mother was concerned because I was sick so often, I never knew I had flare-ups, I didn’t know what flare-ups were; no-one ever told me.

I am not saying that your pain or her pain or his pain is any less uncomfortable because it is not life threatening. Listen to me: I am saying that pain is pain, and that it can be unbearable and it does affect your emotions and social skills. But, at least it does not deprive me, me personally, of the ability to still connect with my loved ones and friends and I am able to communicate.

There is no competition. Pain is pain is pain. My friend who is dying from cancer is fighting every day as she has for five years before her breast cancer metastized into brain cancer. This is not a game where whose pain, whose life is worse. This is MY opinion, own it or reject as you please. I do have enough pain to consider myself suffering. I may not have control over my pain but at least I still have control of all my faculties.

We are all at risk for everything, like everyone else in the world. There is so much sadness: health, terrorism, wars, economy,  that sometimes I need to focus on just by breathing, in and out, in and out.  Sometimes I need to slap myself out of my self-pity and give thanks for the things I can do and more importantly send blessings to those who are less fortunate than I am. Now.

Forecast: Snow And Pain

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I never wanted to be a weather forecaster but I have found if I listen to my body, I truly, can predict the weather. This is not a fun job for me; nor is it a fun job for any people who have Fibromyalgia or another chronic pain disease. There’s a blizzard going on in the Northeast and before I heard about it, I felt it. I felt it in my tired and achy bones and muscles. I couldn’t stand up from a seated position without a lot of pain. I needed to hold on to someone’s hand because I felt off-balance. Some experts say it’s related to the barometric pressure changing. My degree in weather forecasting is not that advanced.

My bones, muscles and body hurt enough as it is. Today, my back and shoulders  and legs are aching and cramping horribly. I am having trouble getting up, sitting down, walking (shuffling) while holding on to the railing in my house for the stairs, one step at a time. I also have the infamous Fibro (Fibromyalgia) Fog that causes me to lose my train of thought or forget something that someone just told me ten minutes ago. It’s bad enough that it’s painful but feeling embarrassed and humiliated is another blog post altogether. I do not understand this mystifying illness; that said, it is hard to expect others to understand it as well.

We’re in the middle of a snow, blizzard emergency now.  I am praying for the electricity and power to stay on so we have heat all night. I’m piling on the blankets, flashlight at my side, candle at the ready….just in case.  It may look pretty outside with snow drifts and the sheets of snow coming down sideways in the light of our windows but it doesn’t feel pretty. It feels horrible, it’s like clenching your teeth in every body part. My neck is stiff and constricted, my shoulders are tight, I feel like the Tin Man of the Wizard of Oz but there is no oil to relieve my pain. I hope for continued heat for all my friends but especially my Fibromyalgia friends because we really know what COLD feels like.

Stay warm my friends, we’ll all get through this together. Huddle under extra blankets and lie still. There will be hot coffee in the morning or English Breakfast Tea with milk and sugar. It’s just the beginning of winter; we have a very long way to go.