Bloody mud piles, play
dig your mean gut, soul, under
Won’t cry over you.
Bloody mud piles, play
dig your mean gut, soul, under
Won’t cry over you.
Beautiful, Happy, Yellow Roses. At one time they brought me utter delight, at another they brought me despair and heartbreak. A different day, a different situation. Total miscommunication.
I choose just to look at the happiness of the stunning flowers. I accept, though it is hard, that some things just can’t be worked out or understood. No matter how much you want to be heard, some people will not hear you. That’s Life. You tried, move on. It’s complicated.
As lightning strikes and cackles, silver pain against a mournful deep black sky, rockets flare rapidly from my brain to my chin. Immediately, I recognize and rationalize the signs; I sigh wearily breathe slowly and finally admit that TMJ has come back to stay for the next few days or a week. At least I love my two options for dinner, peanut butter and jelly or an American cheese sandwich and tomato soup:
I had a tiny, mild spasm when we had dinner but I was eating the mushiest of foods. A veggie burger that I had to scoop up with a spoon and I didn’t eat the top half of the bun. After that, a small portion of ice cream that I put in the microwave, I was sure I had paid the price for the pain already. Yeah, right. As if fairness counts in this world. I shake my head from side to side.
I didn’t “say AHHH” as if I was giving in to a strep test, my mouth was as wide as it could go comfortably (yes, dentists/doctors from all over say I have a child size mouth and face and hands and ring size.) I do remember the tip-toe beginning signs of TMJ and paid heed to them, with further occurrences, I forgot about it and went to sleep and slept well. When I woke up (or did it wake me up?) the first flash of agonizing pain ripped through my brain to my ear and down past my teeth into my wobbly neck.
There is no rhyme or reason for when this happens so I just resign myself to it happening every once in a while and search (I know, I know) for the mouth guard that I should have worn all along. My bad.
I can’t feel too sorry for myself because I’m the one to blame. I remember yesterday, even before the first pang, opening up the case and finding it empty. I did find it later on, of course, I’ll need to search for it again ( Fibromyalgia Fog) since I forgot where it I found it. I don’t lose things, I just misplace them ( repeatedly.) I look outside at the cold, crystallized window and I find a little comfort in the fact that I can nurse myself back to health today without (a lot of ) help from anyone. (PS I found it and have been wearing it.)
I slip back into bed with my five layers of blankets and heating pad, it is the second day and I am still in so much pain that I can’t even go down a flight of stairs to make my cherished mug of coffee. I hate asking for help but this morning I knock on my daughter’s door and ask her to help me. In a second, she goes downstairs to make me coffee and warms my heart. I am so grateful for her.
The coffee barely cheers me up which is unusual. I try to gulp it down quickly but the pain interrupts me. I’m doomed. I’m not allowed to use most pain medication because of my kidneys so I reach for one Tylenol, two. I automatically click the heating pad that lives beside me on the beige carpet. Please help me soon….
I don’t know how other people can get motivated to get dressed and race out of the door when it is below freezing outside. I truly wonder. I don’t believe I was like this when I was young, but then again, I didn’t have Fibromyalgia or Hashimoto’s Thyroiditis. Maybe I did have it all along but never knew?
My mother calls and she hears “the slight off pitch” of my voice.I can never fool her, my mother and my son are the only ones I can’t fool. She zeros in for the kill. “What’s the matter?” she inquires directly bypassing all courtesy. I answer truthfully yet less urgently “I just have a little TMJ thing going on, that’s all.” She sighs, she feels helpless, I totally understand. My 22-year-old son had the flu last week and I certainly felt the same way, “what can I do, do you want something to eat, tomato soup with mashed up crackers? no? NO?!)
Mothers love to mother and when we can’t or when our kids grow up, at first we don’t know what to do. Mothering is our job, one we always will love. Without it, we just feel a little lost. Many people, including myself, ask themselves the question “Who am I now” when our youngest child is in college.
I know the feeling. After my daughter’s two wisdom teeth were extracted during a summer holiday and the medication wore off, she got up and gently woke me up at 3 AM. She scowled and said through muddled cotton mouth “it hurts.” For me, as bad as I felt for her, I felt happy I could help her, I could mother her and make her feel better. I didn’t want her to have pain, I wanted to make any type of pain go away.
My daughter and son have left to go out, my husband will be home shortly. I will go down and make my own soft American cheese sandwich and drink some Yoo Hoo, I don’t want to bother my husband who has worked all day. I understand pain, I’ve lived with so many different forms (too numerous to list), I don’t need people near me, I have all of you.
Thanks, Facebook Friends for always being there for me.
One of my oldest, dearest friends is staying home this Thanksgiving with her dog, Daisy. I feel for her because Daisy is close to dying. Barbara, one of the most tender people I know, if you can get inside her layers of bravado, will not leave her side. She will sit with Daisy and eat turkey together and will not leave her house for one minute, she knows this is Daisy’s last Thanksgiving.
Ba and I have grown up together and I don’t say this lightly. We have been friends for over 30 years. We may not see each other for 5 or 10 years at a time but our connection is unbreakable.
Barbara has cooked a turkey for Daisy because Daisy still has her appetite and I know that my dear friend will be eating with her. The dog can’t walk easily so Ba helps her on to the bed, where she sleeps, on and off. Barbara hasn’t had a good night’s sleep in weeks and from how she sounded I can see the dark circles under her eyes. The ones I used to see when she allowed herself to be sad in front of me, crying, when she was vulnerable and unafraid to be who she was.
Part of me wishes I could be there, for her, part of me is grateful that I have my own family to be with, I was never good at endings. I can barely say good-bye. All of my old feelings of our first dog, Callie dying unexpectedly are coming up. I can’t write this without being misty-eyed and I am controlling myself. A lot.
I am sending my love to Daisy and to my friend Barbara because I know how hard this is, most animal lovers can certainly relate. I know that Daisy does not have much time left in this world, and in fact, when I found out that Daisy died, about a week later, I knew it in my heart, I felt it deeply. I even told my husband the very same day that Daisy had passed.Dog lovers, animal lovers, there is a bond like no other. Daisy was Barbara’s fur baby.
You cannot know love until it is taken away from you. That is when the grief process begins. The house, Barbara lives in now, is just way too silent.
In memory of Daisy, dedicated to Barbara with love.
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.
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.
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.
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.
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.
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.
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.
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?
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.
My dad has been dead for a very, long time. He died at the age of 79, he would have been 91 today. He didn’t die after a long illness though he had heart problems for many years. I’m not sure he was ever the same after he had quadruple by-pass surgery when it was a VERY new and rare procedure.
He did have the same doctor President Clinton had and I know my dad would have just loved tha
You would think that after such a long time the pain would have dulled, and for the most part it has. But, there are days, like today, that the searing pain is so overwhelming that it feels brand new. It’s as if someone had plunged their hands into a recently healed wound on the outside and ripped it open with callous hands, blood bursting everywhere, red, raw, and then pouring in lemon juice. THAT kind of pain. Car accident pain. Torture.
You think you will never get away from the pain, your body, your tears, you are wracked in pain and overwhelming sadness and you feel it will never stop. It does, get better, but you will live with this experience for the rest of your life. When people tell you “time heals all wounds” I say, don’t believe them. Yes, it gets better, day-to-day, but no one can promise you that there won’t be significant days that you will feel your grief with the same intensity.
Every part of me feels breakable and I wait for time to be alone so I can cry in private. A lot of time has been spent in my car just sitting alone. I try to think back and wonder if I am always like this on his birthday but I am sure I have never been this bad. Do I say this every year?
I think that my dad missing out on his grandson’s exciting news about getting into medical school is killing me. My father, my son and I are very close in temperament and for that I am incredibly grateful. In my heart, I am sure he knows, but others mock me and I get tired of defending my beliefs. I know, to me, what is true and that’s all that counts. But, I admit living with three atheists and non-believers sometimes gets to me. They may not believe in messages from the afterlife but I do.
I was always like my dad. He is the missing link in the family dynamics and it is a dire loss for me. My mother and my sister can’t possible understand it but how could they, they are exactly the same. My dad was the one who knew me best, knew what I thought and felt instantaneously. I always had support, I always had someone on my side, someone who understood me perfectly. That died 12 years ago.
I am going to buy a piece of cake tomorrow and eat it in his memory,
I got my sweet tooth from him that’s for sure. I am weepy now but I hope when I wake up tomorrow I will feel better.
Dad, I would do anything to hear your voice, to have you call me your little mouse, to have a hug only a daddy can give. I know you were suffering and yes, I was glad that you had no pain, you weren’t yourself for the last few years anyway.
But, selfishly, I remember my old dad, the way you were in my mind: kind and strong. If you wanted raspberries that cost five dollars, when they were not in season you would buy them, as I would, because money didn’t matter, “if you had to have them.” You were the first foodie, you used to run on the beach in the sixties before “jogger” was even a word. You were so nurturing, optimistic, warm and kind. You live in my heart forever.
Happy Birthday Daddy. I miss you. I will always miss you. I just wish it didn’t hurt so much still.
Dismal, black, steel clouds
stiched with silver-threaded hope
look up, not down, joy!
Little girl, smiles, hopes
big brown eyes, waiting, watching
Adopt me, please, grins.
Hope, is no longer
Bereft of tears, I am rock
Living to learn this.
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.
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.
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.
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?
Release pain, sadness
brittle bones, fluid in lungs
let my body fly.
Bobbing laughter, rolls
aching cheeks, mouths wide as O’s