Thursday, In The Emergency Room…

I’m fine now. Okay, maybe not one hundred percent fine but so much better than I was on Thursday. I just FEEL like I’m alright in comparison with…you get the idea.

The left side of my head was wracked with searing pain, I could only describe it (and again this makes NO sense)  as oozing green jello on crack cocaine wearing a choker collar, fastened way too tight. The black collar was sharp, with metal triangular studs bursting through it about to swallow my skin. I have never had a headache, a one-sided headache, that bad, deep and unrelenting before in my life. And yes, in my imagination, there was blood, messy, crimson, creepy blood dripping from all my veins into my wide open mouth.

It was the headache that went on and off for weeks but got progressively worse.  Anyone living with Fibromyalgia is no wimp, let me start by telling you that. I’ve known all kinds of chronic pain but this was new. “Join the club” did not seem like an appropriate greeting. This stabbing, shooting misery aimed directly at the left temple and whole left side of my face were like launched missiles hitting their target every single time.

I've had a migraine/headache for 6 days straig...

I was also nauseous and my left arm tingled. I was my in my war zone. Finally, after a few hours of this non-stop torture, I agreed, I even urged, to go to the Emergency Room where luckily there were no lines of people waiting ahead of me. I was so grateful that there was only one family before me that I could have started sobbing at the registration desk.

I was already dizzy, so that when the security guard on duty started asking me questions,  I just had to pry my aching head, from my folded arms on the counter, and squint to answer what my name was, my address etc. that was all I could handle.

“Have a seat” never sounded so good to me before. My husband rushed in after parking the car and with his arm around me, my head nestled into his neck, I tried desperately to hold on to my sanity with all the pain.

When they finally called my name they led me to a room which happened to house another patient with the same symptoms, it was so odd. The nurse, the lovely and sweet nurse, was amazed at both patients’ similarities and if we could have laughed, we would have but at that time we still hadn’t received  pain relief and we had no sense of humor.

Grey's Anatomy (season 1)

Grey’s Anatomy (season 1) (Photo credit: Wikipedia)

After what seemed like hours, the ER doctor breezed in and while questioning a few things on my chart (not confidence inspiring At ALL)” What’s a stapedectomy mean? What does the drug Savella do?” 1) ear operation 2) a drug for Fibromyalgia.

Finally, FINALLY they gave me shot of some heavenly drug with a dose of benadryl and a huge bag of saline solution. They took me for a CAT scan and insulted my brain and my age which were not the same (never mind)  as they should be and left me to doze.

The medicine wore off quickly and while all I wanted was to get out of the hospital, away from potential staph infections (I watch way too much Grey’s Anatomy) my neighbor chose another shot (not that I blamed her) and slept it off. At one point I actually wore small blue hospital gloves that embarrassed my husband, shocked the ER doctor and amused me immensely.  I left to just get out of the hospital germ zone and they gave me a Percocet to swallow on the way out. All of this is true.

We left at 1:30 am and I stumbled to bed. The next day I had three, yes, three doctor appointments: First with the Rheumatologist that my husband was hell-bent on me keeping (I regretted that. 2) My Internist (follow up from the ER and 3) New (bad-ass) Neurologist because I had no choice and I lucked out with a great doctor!!

She was an impressive, straight forward, to the point and very, very nice and I begged to be her patient to which she smiled and said she didn’t care who I made my post office appointment with and half winked….We love her. (A big thank you to my friend Phyllis.)

So, now I wait, until eleven pm, a more decent time to go to bed than 8pm. I’ve been waiting for this time, this pain pill, and my pillows all day and night. I think of it this way, nothing could be worse than the headache of yore. It won’t happen again, I hope.

*All typos and grammatical errors are due to prescription drugs that I am NOT abusing.

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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?

Acute catarrhal pharyngitis. The oropharynx is...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.

pillsAs 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.

Person washing his hands

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

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!

Please, Mama

c. 1901

Image via Wikipedia

Don’t give up the fight, Mama. It’s okay to feel anxious but please don’t give up; don’t fall into the rapid hole of deterioration like a black funnel cloud gaining speed. What can I do to keep you from slipping? I will hold your soft downy hands with all of my strength so you don’t go anywhere and you have no choice but to stand up like a strong, red oak tree. I will not let you down; I promise. Have a little faith, accept the bad things that have happened and move past it.

Dad gave up but he had no interest in living anymore because he was so depressed. Do you remember? The light in his blue-gray eyes had been extinguished two years before. He was not the same dad that brought us up, the joking, warm, TWA company guy that took us to eat in the airline terminal. He was not the same husband that protected you and took care of you and adored you and your less than stellar cooking attempts.  You “cooked” mashed potatoes out of dehydrated flakes that you poured into a pot and heated with tepid water or with milk. Dad made his own concoctions for dessert: red, strawberry, glistening, jello mixed with canned fruit cocktail and yogurt. To top it off he added applesauce and rainbow sprinkles. He said you were his favorite cook bar none. No restaurant compared to your cooking; that was real love.

He became an old man who had difficulty walking, he shuffled and it was heart-breaking to watch. I was fearful anytime he walked up or down my three front steps that he would fall over. He refused to use a cane, or a walker, his vanity meant more than everything else. At least he had his dignity to the very end. I was lucky to see him when he was still fighting. I was there when the Doctor asked him if he would be “amenable to training so he could use a walker.” He looked up at her and said “NO, Doctor, I am not amenable to that at all!” I remember he wore his white down jacket with the bright red lining inside. I wore that puffy jacket for months after he died. I wear the chain he always wore for luck. I lost daddy years before he died, we all did.

I pray that you will bounce back, mom, and that the pain of the last six months will dissipate forever. You have fallen twice in a short period of time, you broke your wrist and your vertebrae and now we just want to keep your bones strong by taking the drug, “Reclast.” The “drug whose name shall not be mentioned” that gives you nightmares and anxiety attacks and too much fear. You had a vicious bout with a grueling flu that kept you in bed and dehydrated with high temperatures that confused your own doctor. She made you go to the Emergency Room, I met you there. You got through that, now, you have to work through the past to the present and the future. Think about your favorite occupation in the summer time, swimming in your condo’s pool with its chlorinated clear, blue water and the temperature of a warm bath. You will be surrounded by friends, and fans. You will hold court in the shade while people gather around you like the Queen that you know you are.

We all get older but I don’t want to get older without you by my side. You are the first person I call when I have any type of news. You are the one that tells me that beneath my emotional mush, “I am very strong inside, like steel” and sometimes I need to be reminded. Mama, be abrasive or demanding and unreasonable. Really, its fine. You can remind me that I should exercise more and get mad at your grandchildren for not calling often enough.

I am not ready, I never will be ready to give you up. I want to play “tickle fingers” on your hands like we used to do when I was a small child. I want to see the flirtatious woman I know, engaging with everyone you meet because people are drawn to you like moths to light.  Don’t forget our famous song by Helen Reddy: “You and Me Against The World.” I will sing it for you if you want but mostly I want to sing it with you.

Love,

Your Daughter

Tales of the youngest child…..

Lee doing her thing

Image by kodama (home) via Flickr

I have an older sister who is five and a half years older than me but in some ways I feel like an only child. We are nothing alike and since she never wanted to have anything to do with me growing up, there are not a whole lot of memories that we share. I always told my sister that I would never “pick her to be my friend.” That says a lot. It sums up everything in our relationship. When I needed HER she was never there for me, when I got mugged and asked her to walk me home the next day, she wouldn’t. When I was abused and woke her up she told me to go away and let her sleep. When I had surgery my sister had to be prodded and pushed by our parents to help me; they told me that. She flew to my college graduation and left before my name was called to the stage. My parents had driven up to my graduation which, agreed, was a very long drive, she flew and they let her. I was always the one left to mop up her messes, to parent our mother and father, sometimes, to parent her. Even now at age 54 and almost 60, we are not close; I may love her but I do NOT like her. When my father was in the Emergency Room many years ago I begged her to come. She refused. I begged her again, to come there FOR ME and she said “no.” She did not come, she didn’t feel like driving in the dark even though it was only a 30 minute drive from her house. How can one forgive that? I try to help people, and do good deeds for others, she doesn’t. My mother says “she’s good at calling every day” and “she knows the daughter to call if she needs someone.” Trust me, I am not bragging, believe me, this is not a competition, I don’t consider myself “winning.” How could I? If she is forced to help it is only when if it is convenient for her. I don’t like having a sister that I can’t rely on for anything. My best friends fill that role. I trust them, I can rely on them. I probably could rely on Facebook friends that I have never met before I could count on her. When my first-born, my son, was born she told me to leave a message on her answering machine because she didn’t want to wake up for the news. She is totally self-involved and selfish and she has no clue how she comes across to others, she doesn’t even know herself. She once told our ill mother that she wanted to have lunch with me but I couldn’t and continued to tell our mother that she would NOT drive the extra 20 minutes to visit our mother. My mother, in tears, tells me these things but not her. She has always gotten away with a lot, my parents did not want to make any more waves in her tumultuous past, not even a ripple. That was their big mistake and I knew that as a teenager but they did not. My mistake? For sometimes thinking she will come through, having a tiny flicker of hope and always being let down. My husband questions me: “but it is your sister” he says, “you KNOW how she is” and he is right. I do know how she is; I will never be sure of why she is like that but I have to accept it because she will never change. The ONLY good thing that came out of my sister and me is that we each have a boy and a girl and the “cousins” adore each other. This is one good thing, maybe it needed to skip a generation; they have each other.

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