FIBROMYALGIA: Now With Added Trigeminal Neuralgia

English: 'A pain stabbed my heart as it did ev...

English: ‘A pain stabbed my heart as it did every time I saw a girl I loved who was going the opposite direction in this too-big world.’ (Photo credit: Wikipedia)

Hey Fibro. Can you hear me? I’m a patient, you’re the chronic illness.

Just pile it on, OK?  Not that you are asking my permission or anything, you’re not. One diagnosis after another, I figure there’s more to come, how can I not think that way? I feel betrayed by my rheumatologist who said it wouldn’t get worse. Yeah, right.  I’m an almost 57 years old, (OLD is the operative word,) woman who is utterly falling apart physically. Nope, not even plateauing. Yesterday afternoon I had an appointment with a neurologist for TMJ, I was referred by a doctor I trust. TMJ  causes a great deal of pain, daggers of sharp pain waking me up in the middle of the night, relentless pain. All a chronic pain patient needs, right?

“I don’t have ANYTHING to do with THAT” “I can’t help you at all, said the young doctor.  I don’t  know why she sent me here, he said, that is not  part of my job.” When things are down, and I am tired and feel sick already, I go down and tears started running down my cheeks. Here was my chance to take away one type of pain, I knew it wasn’t going to take away my Fibromyalgia, my chronic pain, my Imbalance, my sleep disturbances or  up my energy levels but at least I hoped that something, anything could take away one of my many types of pain I have. I asked him to call the referring doctor, really, the only doctor I trust in the world.

He was gone a good fifteen message and I took the time to “pity party,” now sobbing into my hands and getting red and swollen with a drippy nasty face. As Oprah has described it, I did “the ugly cry.” I cried  loud and hard and the people at the desk must have thought I was having  a mental breakdown which in a way I probably was. So, after my cry-fest the doctor comes in and says there has been some progress. “Really?, I thought skeptically” I was still crying and he was not acknowledging that in any way whatsoever. Not one, “I’m sorry you are so upset.” Not a :, “I know this must be difficult for you”, NOTHING. He ignored me. I found that appalling. He looked through me. Thanks, Doc. My internist did that too a long time ago. I remember it in detail, she, I’m sure doesn’t, just part of her busy day. DOCTORS:  Be human, SHOW EMPATHY. PLEASE

He then proceeds to tell me that I have another condition ( as if he forgot a teaspoon of sugar in a recipe) : ANOTHER CHRONIC CONDITION NAMED TRIGEMINAL NUERALGIA AND it has to be addressed immediately, which means another medicine, probably damaging my kidneys and liver so it has to be watched carefully. Blood tests, follow-up visits etc,

Guess what? Not only did I try it for two days but it made me MORE dizzy and light-headed. I missed a festival in town that I was longing to go to, I missed out. Again. So, tonight I stopped. I was supposed to double the dosage today and I said “No way.” I was tripping over everything and I looked and acted drunk, without have had anything alcoholic to drink. I COULD NOT WALK, EVEN WITH MY CANE. I’m taking over control. Got it?

Chuck the new medicine and call the non-empathic doctor who will most likely call in another script and call it a day. But this time, I’m ready and I WILL NOT CRY. I WANT ANSWERS AND NO MORE DRUGS IN MY SYSTEM. TELL ME WHAT TO DO WHEN I GET THE ATTACK, NOT PREVENT IT. NO MORE MEDS! I’M DONE.  I AM IN CONTROL, NOT YOU. ANY QUESTIONS? I’LL BE HAPPY TO ANSWER THEM, OH, AND I WILL LISTEN AND RESPOND BECAUSE EMPATHY IS MY STRONG POINT. LEARN SOMETHING.

I Already Said I’m Imbalanced So Shut Up

Gallery

I just bought a cane. A dull pink one straight from the pharmacy. If it really helps my balance issue I will special order a  cane that will have turquoise and a tiny bit of shiny silver and beautifully polished … Continue reading

Figuring It Out. ALONE.

Dark Moon Tree on Night Sky / Magic Fantasy Space

Dark Moon Tree on Night Sky / Magic Fantasy Space (Photo credit: epSos.de)

Part 2: Figuring it Out: By Myself

Why didn’t I just sit down and listen to myself? Really listen and take my advice and go away for a few days to have some alone time? I didn’t have a second this summer when there wasn’t someone around me. Without a doubt, the high point of my summer was spending time with my daughter in Fort Lauderdale,  Florida for five nights, just the two of us. That was amazing and I would do it again, in a hot second, because not only did I want to go but my 18-year-old daughter wanted to come with me. For the first time.

I need my space, have always needed my space so I can breathe. Like a fish needs water, that is how essential my alone time is to me. That’s why I’ve been depressed, I knew it was something simple, something tangible but it was far beyond my reach at the time to understand. Yet, it was right in front of my face. It was just so black, I couldn’t see it.

During this summer, hostile weather and all, I was housebound with Fibromyalgia and Depression, not a win-win combination. For the first time in six weeks I feel so much better, I’m smiling at the computer and a smile feels better than a sack full of jewels. I’ve always needed my alone time and I had none. Not one minute. There was no balance in my Libra life, no balance at all.

I drove myself crazy with questions and speculation deepening my depression because I couldn’t figure out why the cause of my depression. I have never been a depressed person. Anxious yes, depressed, no. I had researched meditation, chakra, astrological practices etc. and what I really needed to do was sit still and listen to myself like I did tonight. Finally. I can breathe again, slowly.  I am yawning with relief and self-satisfaction. Next time, before I run myself around in circles I should just listen to my gut feelings and act on it and not back away because it feels too hard to do or too expensive. It’s worth every single penny and then some. I feel clean and light.

I couldn’t sleep when I wanted to sleep the most. I couldn’t concentrate because I forgot everything the very same second : the cause: Fibro fog (Fibromyalgia Fog: short-term memory loss. I had no appetite and could only eat the smallest of portions. My mind felt cluttered but if you asked me with what I couldn’t tell you one single thing. I felt like I couldn’t breathe. Nothing felt right, nothing was right, I simply was not myself and I was out of balance. I tried to find my center but tried to find it on the outside and not on the inside where it belonged.

It took some time but when I finally figured out WHAT was making me depressed and the feelings beyond that, it was a gift I welcomed. I felt so disheartened not being able to figure it out by myself because that is one of my strengths and yet it was right in front of me. I just couldn’t see it in the dark.

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please, let me fall back asleep

Insomnia...

i fall asleep so easily it’s like i have an instant iv drip attached to my hand, it’s a relief for my aching bones and over-active mind. i snuggle into my favorite position, two pillows beneath my head; my brown hair pulled back in a ponytail with a thin black elastic band. i’m wearing only a soft, red, popeye cotton tee shirt. i dream about swimming and floats and old friends and the artist known as prince and friendly unknown neighbors wearing j.crew sweater sets. in my dreams my son is three again, i don’t need freud to figure that one out. he’s college bound and i am feeling nostalgic, oprah is leaving me too.

i wake up automatically at 4am and at the same time every night for the last few weeks. i desperately want to go back to sleep and i try but it’s of no use. i play every game, try every trick and nothing works. i give up and drag my computer to the tiny extra bedroom/office to see if there is someone awake on the other end of the screen. usually no one is. i know it takes time for me to fall asleep, usually between two and two and a half hours and there is not much i can do about it. i have been through this pattern before, i just want it to stop.

i’m so tired but my head and body are still awake and they won’t give up the fight no matter how hard i try. i try not to try and that doesn’t work either. i notice things in the room that i haven’t noticed before, forgotten dusty books, a paperweight with dainty blue flowers. my dog has followed me in the room, she is so used to coming downstairs with me at around ten for a snack that she is confused.  i sit cross-legged on the bed, surrounded by clean laundry, my eyes wandering to my angel statue, my daughter’s first ballerina shoe that i framed, boxes of writing since high school, a mini twa jet i keep in honor of my father. my whole life is in this room and around it.

i want to be back lying in bed beneath my royal blue quilt, and a an old comforter in a cherry covered duvet. i love any pattern of cherries, they make me happy. i want to sleep but i know i can’t, my head is like a ticking clock. my teeth and jaw ache, it’s probably tmj, i think clinically. i remember i never called my friend back yesterday and i don’t like being rude but it will have to wait until tomorrow. sorry, but of all people i know she will understand. she suffers from fibromyalgia and chronic pain issues too. apparently sleep problems are common among us in the tribe.

finally at around 6:30 i start yawning and crawl back in bed keeping my eyes averted from the clock on my bedside table. i have stayed up long enough that i think it will be ok, my eyes close, again. all the colors become white, the fresh air coming from the window is softly soothing. i beg the birds not to come out and sing for just a little while.

i want outta here

Fist by David Shankbone

Image via Wikipedia

i’m sicka my body, sicka my self, cranky as all hell for bein my age and my character and my illnesses. so sick i wanna steal someone else’s body and call it my own so i can feel myself for who i really am. know what i’m sayin? i don’t wanna be a granny, too old for who i am inside me. my body doesn’t match what i feel in my heart. i cant be happy anymore least not tonite because now my ear hurts and i dont wanna go to see my doctor cuz i am sick o doctors, doctors o every kind. i got lots of different doctors one for everything, and then some. none of them ever did me much good an i don’t care if they are hotshots. no cure, no care.

i wanta be another person in another place, or maybe me in a different time. i want ta be in hawaii like when i was 30 and in love and slim and my green eyes were dancing and my legs, arms, face, body was tan, like with healthy skin not like some tanner beds they have now. i was as brown as milk chocolate and equally sweet. i was someon way back when and i mattered.

now im just old and hurting and i ache so much all the time that it makes my mind go unhappy and a little nervous ass too. who am i now, i dont like this stranger, this whiny mess, she is not me but afraid she is me. i just dont like her anymore, not the way she is today. bring back that girl with the twinkling, brazen green eyes and the perfectly shaped lips. replace her sagging jowls with happiness and the black circles under her eyes, make them disappear too. you are old now and sick and there will never be a witness to who u were before you got these chronic illness like fibro and hashimotos thyroiditis. you know what it means. it means you hurt all over, all your muscles and all your bones and nothin makes you feel better any of the time except maybe when you sleep. sometimes when i sleep i wake up at 3am and then everything is just worse than usual because things get scarier and you feel really alone. try to sleep tho, because its your only escape from relentless pain. try.

jus remember in the mornin, you gotta start all over again, cuz there never is a tomorrow that is different than today. because sometimes life is not so fair even tho there are people that have it worse. but after awhile when u don’t get a break you think you gonna just lie this way forever and someday get smaller and smaller but you will still be lying on that bed, under blankets except the bed will stay the same but not you, no will just go on and disappear, like angry dust in the air.