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.

Eppiglottitis, Esophagus, Hernia? HELP!

Cirugìa de hiato, HERNIA PARA ESOFAGICA (Photo credit: Antonio@GDL)

Last week I went for the dreaded barium test (forgive me if I gag just thinking about it) although it wasn’t as bad as I thought it would be. I imagined slugging  the entire thick, chalky mess down in two or three large gulps and finishing it but that was not the case. Luckily it was more like take two sips and swallow. This type was not even that thick. It’s not that I would order it in a restaurant but it was manageable. I highly recommend the radiologist who was soothing and comforting and told me “it wasn’t a big deal.” Thank you.

When I finished Dr. Radiologist came out and told me I had a hernia in my esophagus. Huh? Yes I had a hernia in my esophagus which was fairly common and probably could account for me swallowing the wrong way, quite often and coughing a lot. But, oh, my epiglottitis followers, what automatically came to mind??? There has to be a connection between the eppiglottitis and esophagus hernia, no? It seemed genius to me. Could this be a clue in solving the mysteriously painful illness that we know so much about? Of course I thought I was brilliant and could tell my people (YOU, my fellow eppiglottitis sufferers)  that we could prevent eppiglottits in the future but sadly that is not the case as far as I know.

I have an appointment scheduled with my ENT (ear, nose and throat specialist) on Monday and yes, I will beg him for a correlation even though I’m pretty sure there isn’t one. I just wanted to give all of us some hope. If there is ANY I will post the results on Monday, I PROMISE. Wouldn’t you think there would be a connection? I mean it does sound nutty enough.

Leave it to me to have the weird diagnosis, but believe me I am NOT complaining. With all the testing that they did, I am gloriously happy that the only thing wrong with me is this hernia. After losing forty pounds, having digestive issues (really bad digestive issues) and looking gaunt and pale as a ghost, I can cheerfully deal with this. I’m having a colonoscopy in a few weeks, maybe an endoscopy is needed as well? I have no idea. But if there is any hope of a connection between the dreaded eppiglottitis and this hernia in my esophagus, I want to be the first to tell you. And, you know I will. Let’s keep the faith although even I know the odds are against us. Let’s wish each other LUCK. We need it.

Eppiglottitis: Dear Innocent Souls, YES, You Can Get It Again. (I Should Know) 4/2013

English: Title: Torture Chamber of the Inquisition. From ‘A Complete History of the Inquisition’, Westminster, London 1736 (Photo credit: Wikipedia)

The plight of those of us who have suffered from Eppiglottitis, an illnesses/virus/ torture/infection has gotten way with too much pain already and NOT just in the United States. People from many countries around the world share the pain. I know that for sure. There are searches for Epiglottitis on my blog, always. Today there was a search, from some poor, innocent soul who asked: “Eppiglottitis, is it possible to get it twice?” Oh, dear one, I just want to give you a great big hug and plant gentle kisses on the top of your sweet, innocent head.

Yes, you can get it again. In my blog I have written about the two times I had Eppiglottitis and how I wanted to beg, borrow or steal major pain killers from hospitals, doctors or become a gangster and hang out in the streets to score illegal drugs (okay not really ). People really do not understand the amount of pain that this  illness brings and frankly, unless your ENT (Ear, Nose and Throat, Doctor) has had it, they don’t know a thing about how painful it is either. Not for one second. The only people who know are the people who have had it or are going through it now. Do I smell the beginning of a support group?

What does it feel like? It’s like taking a scalding steak knife and searing your huge, ugly, raw open wound, repeatedly (obviously with no anaesthesia) over and over again. It is impossible to swallow because the pain is so excruciating but really what choice do we have? The last time I had it I was on a cocktail of medicines, steroids, a throat rinse, antibiotics and whatever else they threw at me but what I needed was a morphine drip and a sleeping medicine that lasted a solid week. I wish.

When I couldn’t stand the pain anymore I dragged my body to the medical group, to the ENT offices before they opened and BEGGED for someone to see me. I was in so much pain that I was crying and I looked like all hell, pale, distraught, helpless and hopeless. This is not something I would normally ever do. I was so grateful that they let me go sit in the office chair, who knows, maybe they were afraid of me. I WAS afraid of me. When the doctor came in, he scoped me, which requires putting a tiny tube through your nose to see beyond your throat. He literally gasped and said “How the hell did you get THAT?” I was not in the mood for rhetorical questions nor was I feeling combative. I just wanted him to tell me how on earth to get rid of this demon that had taken up residence in my body.

Apparently it’s not common to get and very difficult to get rid of, I live in fear of getting it again and I assure you, every Fall I think about it when the weather turns chilly although I am sure I could get it at anytime. Another doctor suggested that if I get it again to go see an Infectious Disease Doctor in addition to my ENT. Great, that’s what we need, to waste more time in doctor’s offices waiting to be treated. I’d rather check into Rehab so I could become a drug addict for pain relief until it healed.

I’m here for support, questions and comments. I am not a medical doctor, no, I’m better. I’m a patient who knows exactly what you are going through. Ask away or just complain, it’s not anything I haven’t complained about already.

My Fellow Epiglottitis Peeps- A Follow Up

Image via Wikipedia

When I first had my two bouts with Epiglottitis (OUCH)  no one had ever  heard of it. Even my ENT said and I quote: “how the hell did you get that?”  If I could have spoken in spite of the pain I may have said ” How do I know? You’re the doctor.” But speaking, swallowing, breathing was pure torture and being in such intense pain makes you less than quick with a comeback. When I first posted “Calling Epiglottitis A Bitch Is A Vast Understatement” I wrote it for myself. Why did I have to get this pain? But, if it’s something unusual, it softly calls my name.

When I had Epiglottitis I told people it was the worst pain I had ever had, that childbirth was a cinch in comparison. When my two awful experiences had finally passed I asked every Dr. and medical person, if I could SOMEHOW prevent this from happening again. The answer was an unequivical “NO.” I scheduled an appointment with my internist just to discuss this and begged, pleaded and cried for the vaccine that is given to children. Another “NO.”  She said it was for infants only. That seemed drastically unfair. After all, if those babies could have it why couldn’t iI have it? Give me 100 times the dose if you want, anything not to have to go through horrific, burning, stabbing, knife-in-the-back-of-the-throat pain again.

How does one get it? What is it? Apparently, it’s a virus. I know, when there is something doctors don’t know for sure they call it a virus but apparently this is one and a nasty one at that. It could be related to the Herpes Simplex virus, I was told, but maybe not…..It is frustrating and painful and so far this year (fingers crossed) I didn’t get it but I do live in constant fear of getting it again. No joke.

Did anyone get it this year? I  hope you didn’t or if you did that it was a mild case (oh, who am I kidding there is no such thing as a mild case, it’s outright torture.) My ENT treated it with Prednisone, Valtrex and some special rinse, (and maybe something else, not sure) it helped…..after what seemed like an eternity.  It will not go away on its own, beg for pain medication.

For those of you who wrote back to me with your comments, thanks. We helped each other. Never before had I heard of this bolt of lightning in the back-end of the throat, and hearing from you made me feel better, validated. Unbelievably, my blog post “Calling Epiglottis A Bitch Is A Mild Understatement” gets so many hits on my blog consistently. As you know, I blog about everything: food, Fibromyalgia, feelings, fun, Hashimoto’s Thyroiditis, Chronic Pain,TV, music, food, children, parents, grief, love and loathing. I blog when I am happy or sad, about funny things, family (they are not too happy when I write about them) my dog and dessert. But, this post about Epiglottitis constantly and consistently gets hits and I’m wondering why. Do more people have it now? Did it become an epidemic? I thought I was the only one in the world that had it, (clearing my throat) twice.

Here’s to you, my Epiglottitis Peeps, If anyone has any updates or insights, let me know. Or if you have had it recently, I am here to commiserate. I wish I could offer you a magic cure, I wish I could offer myself a magic cure  but none exist. I’m here, though, to share your pain. Believe me, I understand it completely!

p.s. One important tip: if you have had this once, and feel a bad sore throat coming on, go directly to an ENT and not an Internist. My ENT gave me that advice, don’t wait around a week, like I did, waiting for it to get better. Get it scoped, diagnosed and treated before it gets any worse.

Fibromyalgia? Auto-Immune Disease? Chronic Pain?

Oh me, Oh my. All of the above and then some. Diagnoses dished out like those colorful candy buttons on a long roll of white paper. Whatever Dr. I see gives me another diagnosis. I’ve taken Cymbalta when the Dr. thought I had Fibromyalgia from the tender points she pushed on my body. Now, that technique is not valid for diagnosing the illness anymore.  After that I went to an auto- immune specialist for the Hashimoto’s Thyroiditis and the new inflammatory disease he discovered.”You are a very sick woman” he droned.  I’ve been on Methotrexate, I’ve had Epiglottis, twice (severe throat pain is an understatement), and I fervently pray I never, ever get it again. I’ve been on Prednisone half a dozen times, Vitamin D, Synthroid, Plaquannel, Trazadone and more….

I was put on Cellcept (“the medicine that has the least amount of side effects”) to replace the Methotrexate (that landed me in the hospital) and after a month I couldn’t stand the extreme intestinal side effects (“only 8 percent of the people get it “). Lucky me!! I wrote to my Dr. and he said “give it another month” because I don’t think he believed how bad the side effects from this drug really were. I begged for some sort of stomach aid but he refused. “Give it another month,” he intoned flatly. End of discussion.

I’ve been off Cellcept for a week and a half and I am still suffering from the same severe intestinal side effects I ‘ve been having for two months. I wrote the good Dr. and told him I was coming in (as in squeeze me in) because the side effects were so overwhelming I couldn’t leave my house. “Oh, it must have been the Cellcept” he said.  (ya think?) My bad. He took me off the offending drug and promised that in 2-3 days I would be much better and all the symptoms would disappear. It’s been 6 days and counting…..

He did prescribe medicine to mask the symptoms and  when I take the meds they work, but alas, when they wear off, it’s really bad news. I can’t live like this. He threw around words like endoscopy, I added silently colonoscopy, what else? I see a trip to my Gastroenterologist in my very near future.

It’s been three years now since I started on this bumpy ride of chronic illness and I’m not much closer to a cure (I know there is NO cure), resolution.  I swing from wanting to get off all medication and trying to find the right one (the third’s the charm, right?).  I’m waiting a few more days and then I will, once again,  attempt to repair my own physically fragile life, to ask more questions and demand answers. Nicely.

Any suggestions? Any genius Doctors?  If I was incredibly wealthy I would head to the Mayo clinic but I don’t have that kind of money. Any rich donors? (just kidding).  I will also go to the natural pharmacist and discuss with him what might help instead of all these toxic medications I’ve been on. I know though, that genius Guru Dr. has another medication in mind for me so that’s in store for me soon, but not quite yet.

I’m done, pity hour (or 15 minutes) are over. I’m not going to think about it until next week, when I CAN TRY and do something about it. Have to go now. Guess where.