*A Blob In A Bed

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.

English: steaming hot mug of coffee

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.










Haiku Horizons, Try

Dark, stormy, alone

Frozen hopes, cling to memory

Trying hard, hold on.











Black, electric probes

Try to shock, me out of me

Crying bloody tears.


Try to imagine,

life with chronic pain, grief, tears

A fantasy, sun.




Life With Fibromyalgia And Hashimotos Thyroiditis 12.20.2014

I really had no plans to write this but I noticed a few people were reading an update of mine from 2011 on this very topic and I just couldn’t let that happen. Believe me, not much has changed but I thought I owed it to you to at least change the date and update you with my thoughts.Hashimotos Thyroiditis is an autoimmune disease of the thyroid. Many people have this condition in conjunction with other illnesses.

Having Fibro and Hashimoto still sucks. Big time.

No surprise there, right fellow sufferers? My number one complaint is not having any energy and if one more person tries to tell me to exercise more (including my new Rheumatologist) I will want to slap them silly. I should have stayed with my old Rheumatologist,  he loved me best but I just couldn’t go see him in the city anymore. I didn’t have the energy to take

English: Common signs and symptoms of fibromya...


trains and buses and taxis and walk up two flights of stairs and down two flights of stairs. It’s not as if I dropped him, he was so sweet and understanding, Fibromyalgia did.

I now see a not so nurturing Rheumatologist in town and her motto is basically “Get over yourself and exercise.” She must know my mother.

I KNOW exercise is good for me, for us, but it sounds better than it is. Fibro Flare, really? I hope you have more discipline than I do because I need tips on how to haul my hurting rear out of my bed and on to the treadmill.


I KNOW it is not good for us but I COULD stay in bed 24/7 because of the exhaustion. Couldn’t you?

I’m on Savella twice a day, I was given a choice between Savella and (Fibro Fog, can’t remember the other one’s name but it is widely used and known to put on weight) so I chose Savella. It helps. Is it a cure, ha ha ha. NO. There is no cure, as we all know.

I’m now considering myself LUCKY that I got these illnesses when I was 50 when I hear stories of young when who get these illnesses in their twenties. I feel for you young ladies, I truly do.

What’s the worst part (parts) of Fibro for me? No memory and no energy!

No memory. None, Nada, Zilch. It scares me to pieces. It really does. I go upstairs to get a sweater and as soon as I go up a short set of stairs I am turning around in one room and then another NOT KNOWING why I came upstairs.

Yes, it freaks me out. Anyone else have this too? I need reassurance.

That, and having no energy except for one or two errands ( if I am lucky) every day or every other day. Buy the way, between hearing loss and forgetting I have young adult children (especially my daughter) who still makes me feel like dog shit when I don’t remember what she told me. “I TOLD you that…” and she may be referring to a year ago or two weeks.

I feel bad about myself as it is, but wow, I feel worse after one of those angry, “how stupid ARE YOU? looks.”

Researchers say they made a discovery about nerve pain, but to tell you the truth, it’s just words on a page. There has been no further development to HELP US. If you have found something, please let me know.

As for now, do the best you can, give each other support, I’m here, lots of Fibro Friendly people are on-line. Some of my best friends started with a now defunct Fibromyalgia group but we have stayed friends, close friends. (There is no image for a group of people in pain and smiling, I tried.)

I wish you all good health, good luck and better things to come in 2015.

With love and empathy,



so, so tired i’m not looking at the keyss

this is one of those random, no punctuation, stream of consciousness blog posts that i sometimes do with my eyes closed. thanks to my junior high school teacher who taught me how to type and bribed me with multi colored jelly beans.

A bunch of Jelly Belly jelly beans resting com...

mu head is back lying on the pillow and i just finished a lot for dessert, chocolate covered cherry and small lorna dunes.. i am so tired that mh ehes are thickenening with sleep and conjuring up stories’\\that make no sense. christopher robbin and winnie the pooh, a sinister man in a closet and in the background thart i can’t see but i can hear is the ocean, roaaring with an forceful tide.

i know i love the ocean so it doesn’t scare me at all//. tomorrow my baby girl of 20 comes home i can’t wait, her brother coming home on saturday i think. i have to rememver  the  3 day adjustment period we went through over thanksgiving that i totally forgot about. this time, prepared, maybe it won’t happen. i long to see them sometimes, my heart aches and yet  dan and i are happy to be alone together which is nice.

another year ending, i won’t be wsorry to see it end, it was a rather tough year but i i guess we didn’t notice that when you re young but, likr s rainbow after a thunderous cloud and rain storm, we get through the storms, one afrer another yet the rainbows are hard to find now.  rainbows are very rare, but if one day you see one it will stayu with you forever.

i’m tired so i need to go to sleep on my newly washed old flannel sheets that i haven’t used in yers.they have a dog and cat pattern on them and they are cheerful. they have been sitting in my closett scrunched in a ball,aching to be used. i thought theyw ould be too warm for mme…what on erth was i thinking? maybe that was pre fibromyalgia or pree aging but to me now they are a gift of softneww. i rub my feet against their  velvety surface.

now i must go, my eyes will remain shut. i will open them just to shut down the computer to turn off my pjone and my bedside light. i’m looking forward to putting m y head on my dancing dogs and cats pillow aand tht first cup of my morning strong cup of coffee with cocoa powder mised in. anothers night brings nother day. there’s hope.

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.

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.



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.

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.

Acute catarrhal pharyngitis. The oropharynx is...

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.

Eppiglottitis Mom


Mother and three children, oil on wood, 38.5 x...

Our family’s circumstances stay the same, unemployment, unwell but managing,regular stuff, nothing has changed. There’s been no formal job offer or no magnificent leap in good health.

My husband had skin cancer removed from his eye brow that required several layers scraped off until there no cancer cells were detected.Yes, it was another bump in the road. We both handled that in stride, well done!


I guess we are so used to the ups and downs of life that they don’t quite startle us as much as they used to, maybe that’s a good thing. Maybe that’s the lesson that we are supposed to be learning. If it is, it has taught us well. I know we can handle anything thrown our way, I’m not asking to be tested again and again but we have been tested and we haven’t fallen apart or broken down. We have stuck together, even stronger in our bond. It’s comforting to know.


Which means, parenthetically, that on the very (very) rare occasion we hear good, actually GREAT news, it feels FANTASTIC yet very, very new and foreign. A feeling that we both haven’t felt in such a long time that it feels brand new. And, yes, we certainly appreciate it more, now more than ever.


So, when our son called me, breathless, to tell me he got into medical school,



I was at first, speechless. “What?” I said because I wasn’t sure of what he said. He said it again, slowly, my voice rose two octaves ” WHAT?” I squealed and started shrieking, and felt for the first time that all was good with the world and that I now knew what happiness felt like.



It was brand new and intense and it was a feeling I was not used to. I remember in my mind thinking ‘  so this is happiness’ like bubbles floating inside my head.

But, it was a feeling that you can’t even imagine or dream about because you can’t wrap your head around that feeling and you certainly don’t remember when you felt like that before.


When you are a parent, the size of your joy or sorrow doubles when you have kids. If they hurt, you hurt twice as much. But, hearing the joy in their voice, that is better than anything in the world because you are so much happier for yourself because they are happy. I kept reminding myself of this feeling and still do to remember what happiness felt like. It’s so fleeting like a butterfly dancing by you, a wisp of a thing but if you concentrate, really concentrate you will remember, at least part of the feeling.  HIS joy and your own are inseparable. It’s the mommy quotient.


Nothing else has changed; it’s all perspective. I’m trying to remember that. Look at your situation in a different way. Express gratitude. Be happy for all the good things in your life, smile as much as you can even if you don’t feel like it. It makes a difference, I know.




Santa, Would You Consider This Idea?

Dear Santa,

I haven’t moved from my bed in three days and I don’t feel bad about it either. Sure, I go upstairs and downstairs but I haven’t even exposed my bare shivering cold body to the shower, I have to plan for that. My goal is to shower tonight but more likely it will be tomorrow sometime in the morning after a good night’s sleep.

It is this horrific change in temperature and while I could blame it all on Fibromyalgia and many of my physical disabilities I am not going to do that. For me, it sounds like I’m staging a revolution of sorts, a sit in from the sixties (“I told you, year after year, how much I HATE the cold weather” ) which is entirely childish but so definitely true.

I don’t want to leave my house (okay bed and blankets) to go outside where the wind blows right through me and I can’t find a glove/mitten made warm enough to keep my fingers toasty. Does such a thing really exist? I’m doubtful. If so, can you please send me a pair or two?

Honestly, how anyone except teenagers would want those texting gloves is totally beyond me. I just don’t get this texting craziness and I never will. I do know I stink at technology which my children make fun of me endlessly. The trouble is I don’t care about it, not the phone or the computer, they have no real value to me. They are “things,” just like my car. They serve a purpose but I wouldn’t go crazy if there was a scratch or two on it. Please. My kids were practically born with these gadgets, I was not and I have no interest in them.

I want a phone to reach a loved one or AAA if my car breaks down, a computer to write my blogs and a camera for photos on my phone. That’s about it. I don’t use 99 percent of the phone’s functions to begin with and maybe, maybe, I know half of one percent of what the stupid phone can do, if that.

I am waiting for the first frost and snowfall, I know it is coming any day now. The bad weather, ice storms, sleet, leave me home bound (not that I am complaining) but I’m terrified of falling on the ice and breaking bones. Been there, done that, many times. Look, some people are penguins and love sashaying and skiing through the snow and others, like me, prefer warmer climates. There is nothing wrong with that, except when you are a sun worshiper, living close to the North Pole. I truly love you Santa

but I don’t exactly want to be your neighbor. Have your ever considered two locations?

Is there an island for people who prefer warmer climates? Send me there, to the South Pole Annex. Why must everything take place in the North Pole?  I will take care of all the boys and girls, elves, helpers, reindeer who fail the Winter test  and I will love them, take care of them and appreciate them. You can count on me, Santa, you know I love animals, misfits and all.  Please consider this as my Christmas wish. To be somewhere warmer, yet close to you, as always, in my heart.

Santa 2 To Be?

Dear Stupid Pesky Migraine,

BACK OFF. No, Really, Back the flippin bleep off. Got it? Good. I’m pretending that you are just a regular, tiny headache and I’m still in full control of my life. Sure, I’ve dimmed the lights, for a cozy, romantic look but that proves nothing.  I just have a minor headache and even though I am squinting, it’s because I took off my glasses so I could see better. You understand, I’m sure.

I’m new to this world of migraines so I don’t have a whole lot of experience, do I take that preventive medicine now or am I wasting it? I don’t know. I really don’t, I guess I’ll wait, in an hour it will be better or much worse.

I know I am tired, I have been tired all day because I didn’t get enough sleep and I wish I could tell you that I had a great time last night drinking and dancing at some fab party but frankly I haven’t been to a party since my sister’s surprise party which really wasn’t that much of a surprise.There was no drinking or dancing there (at least for me) just Jane’s quinoa salad which I hate to admit, I really liked, because she had raisins and craisins and dried apricots in it. Fruity quinoa, who knew?

Why have I recently developed migraines at the advanced age of 57 years of age? I have no flippin’ idea. I got through the first one at the ER after hours of agonizing pain

and finally they gave me a shot of something wonderful so I could get some sleep and the pain eased away so very slowly. I discharged myself after the first round of medication because I wanted to be home in my own bed. My counterpart in the next bed, with the same exact diagnosis, chose to stay in the hospital and get another dose of pain relief.

Can’t say that I blame her, looking back, If I had known then what I knew now, I’d still be in that bed smiling in my safe slumber. I wish they had given me a strong medication to take with me but they don’t trust us normal pain people with “abusive substances” as if one Percocet would put us over the edge. Anyway, all I wanted was to get out of the hospital, infestation hotel of germs and creepy-crawley things.

So, do you really think I needed ANOTHER INVISIBLE ILLNESS to add to my plethora of symptoms because frankly, I thought I had enough. I KNOW I had enough. Is this some cruel joke or do you think this is wildly hysterically funny?

I’m not laughing, I’m disgusted, fed up and sick of all these unrelated illnesses that I keep dreaming about a miracle cure or at least ONE interested doctor that will take it upon him/herself to try to figure it out. Got no volunteers except the mother of a son (who used to be friends with my son) in elementary school. That’s the closest I have and I truly appreciate her interest. Nobody cares, anymore. That’s what it feels like, that’s what it is.

All those one in a million doctors that take the extra time to try to solve the puzzle, I haven’t found one yet and yes, I’ve been looking. Any volunteers?  I will beg if you want me to but nobody is sending me emails or sending me SOS messages that spell out ” I WOULD LOVE TO HELP YOU ANSWER THIS MYSTERY, LEAN ON ME.”

In the end we each have our own shit we have to go through. I sure have mine. Apparently, It will stay mine forever. All mine. Because, in the end, nobody cares, let me introduce you to Medicine 101.”IT’S JUST NOT THEIR JOB, DEAL WITH IT, IT’S ALL UP TO YOU. LOOK WHO IS LAUGHING NOW, IT SURE ISN’T ME!”

Same Old Pain, Now With Migraines

I’m used to the pain I have from Fibromyalgia, it’s not bad most days, no pain killers needed. Sure, there are a few days, mostly weather-related, that it gets worse but I can  stand that too, most of the time. It was under control until one day when I started having a headache that would not go away.





I’ve had plenty of headaches before mostly in the middle of my head and that’s how this one started so I thought nothing of it. I took Tylenol, the only medicine I am allowed  (Chronic Kidney Disease) to take, but it did not help. It was a mild headache for two days, I thought nothing of it.

Suddenly, the pain started crawling up on the left side of my face. It settled there like a jumbo jet that had just landed at the airport and was pulling straight into the proper gate. Passengers came off the plane then airline crew, the plane was cleaned and this baby was not going anywhere tonight. The headache had landed.


It’s hard to imagine I have another pain symptom but I accept it as my curse, this ugly life of mine. At almost 58 years old I now get migraines. “Welcome to the club” I mutter angrily under my breath, asking: “Why me?”


The first migraine, which ended me in the Emergency Room of the hospital moaning in pain and begging for a shot of something, anything, to relieve the intense, hammering pain happened a couple of months ago. “Nice to meet you, meet your new doctor, your Nurologist”.

I thought it was a one time thing, A visit to the Emergency Room, a shot and hydration and two days later I was fine. I went home where the lights were dim, I was safe in bed and all I wanted was darkness and no company, no radio, no television, just black solitude. I laid on my back and pulled the covers over my forehead, yes, this was my safe place, I promised myself the pain was over, gone for good.

Unfortunately, it came back with a vengeance twice more. Once a month ago and one two weeks ago.  I tried all the tricks, the medicine to supposedly make it go away before it really hits, a dark room, breathing slowly, ice, pressure points, Reiki, meditation….you name it, I tried it but it is clinging on to my head with traction and beating harder and harder.

It is now moving to the center of my forehead and the hammer is following after the movement, banging away, beat after beat rhythmically while all I can do is shut down and shudder.

Deutsch: "Kopfschmerzen". Die wohl b...

Deutsch: “Kopfschmerzen”. Die wohl berühmteste – stark von James Gillray beeinflußte – Arbeit in einer Reihe von sechs Blättern “medizinischer” Karikaturen, in denen Cruikshank Krankheiten als Teufelswerk brandmarkt. Erstmalig publiziert: 12. Februar 1819. Originalgröße: 210 x 255 mm (Photo credit: Wikipedia)

I know this isn’t fair, I know that life isn’t fair. I have accepted this new symptom because i don’t have a choice. It has joined the family of maladies that already exist, trapped in every limb of my body, from head to toe.


Since I was five I’ve always had a very low tolerance for pain, my parents used to tell me that. If one orange baby aspirin worked on other children to get their temperatures down, I needed two. I am still that way, believe me, it isn’t fun.

Recently, a friend told me to push my Internist to check more complicated Lyme Disease tests and I will do that. What are the chances? I don’t know but I will try. I don’t want to get even remotely excited.

Been there, done that, way too many times. I have no hope. I feel battered.

Enough already. This is getting old. Fast.