What Is Real

The Skin Horse had lived longer in the nursery than any of the others. He was so old that his brown coat was bald in patches and showed the seams underneath, and most of the hairs in his tail had been pulled out to string bead necklaces. He was wise, for he had seen a long succession of mechanical toys arrive to boast and swagger, and by-and-by break their mainsprings and pass away, and he knew that they were only toys, and would never turn into anything else. For nursery magic is very strange and wonderful, and only those playthings that are old and wise and experienced like the Skin Horse understand all about it.
“What is REAL?” asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. “Does it mean having things that buzz inside you and a stick-out handle?”
“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.”
“Does it hurt?” asked the Rabbit.
“Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.”
“Does it happen all at once, like being wound up,” he asked, “or bit by bit?”
“It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”
“I suppose you are real?” said the Rabbit. And then he wished he had not said it, for he thought the Skin Horse might be sensitive.
But the Skin Horse only smiled.

New Years Resolution….Of Sorts

Well, I promised myself, and a few random others (as though anyones out there, Dear reader?) that I would try to blog more, to write more. Its helped in the past, it helps me get some things out, it gives me a place to talk about things that I just can’t talk to anyone else about. Why is it the way I understand things-the way they make sense to me-and should make sense to anyone and everyone else-Don’t?

They just don’t?

I believe in simple kindness. Truth. Love. Friendships and relationships that last the test of time and can wether a few storms. In not holding a grudge or reliving the past. Knowing when enough is enough.

Call me simple. Call me old fashioned. Call me country, niave, or even stupid. But this is the way I have managed to get through my life. Somewhere along the way though everything changed around me. That used to be enough for everyone, for people, for some people. Its just good honest human values and simple common sense, right? I dont understand why that cant be enough. I just dont get it.

I guess now my worry should be that I have passed these things on to my children. I never taught them to be mean to others. To not care when someone needs them. To disregard the feelings of others in favor of what they want. To kick and trample others to get to the top. I never learned that. My “mean and shitty” gene is messed up in my DNA.

I’ve said it before, I’m just a worm. Everyone kicks me to the side. I’m the runt of the litter-kinda sickly and in need of a little extra warmth and love. Im that girl who always gets pickked last, but I stand here anyways,like an idiot, awaiting my turn. Happily congratulating all the others who go first. Patting them on the back. Wishing , oh god, just dying inside from wishing, that id be next. But pasting that stupid smile on my ridiculous unwanted face as I get passed up again…and again..only to find out that the teams are uneven. no room for me anywhere…..i’ll just sit here and watch and smile, happy for the opportunity.

Hit and run flare

It has been a few weeks where the temperature index ranges somewhere between OMG and WTF. Yes, it has been that hot. I wanted a Slurpee from the gas station on the corner and the thermometer in the car read 119. People with Fibromyalgia have an intolerance to either heat or cold. Mine just happens to be heat and I live in the middle of the desert.

Go figure.

Chronic pain is really a reality all unto itself. Even the simplest of tasks tend not to be simple anymore. Any decisions that are to be made tend to be made from the chronic pain vantage point. We can’t make any concrete plans because they may have to be changed due to the levels of pain that we might be experiencing on any given day.

When the body and the brain talk to each other neurotransmitters are used to communicate. Every little transmitter is balanced by another so we don’t look so good on that front. Just another lovely little item that is out of balance with our lovely little syndrome. For instance, when you touch a trigger or tender point on a healthy person they might not have much of a response. Now try that on someone who has Fibromyalgia. I can just see anyone who has it either nodding or smiling because they know just what is going to happen.

Anyway, back to the humidity. I’ve realized that I have a talent. Did you know that I can feel every little rise in barometric pressure? With every little move up the pain steadily gets worse.

Are. You. Kidding. Me?

Well, let’s look at the sudden rise in temperature. We went from about 101 degrees to 117. That in of itself is enough to cause one hell of a flare.

Número Uno

Once we got through with that there is a rise in barometric pressure due to the storm front moving in.

Número Dos

So the wind is picking up, the humidity is rising and there could be, “a stray thunderstorm” tomorrow and through the weekend.

Número Tres-I’m out!

So, as I go down for the count I want to introduce a new “side effect” of our “syndrome”.

I call it “don’t bother calling an ambulance, I’ve already been run over by one”.

In other words,

hit again by an 18 wheeler, or something equally as large. Or perhaps larger. Or a tank. Or my husbands works truck, and then he backed up to see what he ran over, figured it must’ve been a snake or a squirrel, and then ran-the-fuck-over-again……

Do tanks even have license plates? I was face-down, I forgot to look…

Welcome the Pain….My Ass

It’s been a tough week. Usually I like to write at night but the last couple of nights I’ve been in the fetal position swallowing pain pills and muscle relaxers praying that they would take the edge off the pain a little. I haven’t had pain levels that got almost to 10 in quite some time. The pain is bad at 7 and 8 but the last couple of nights I understood how some people do not make it through continual levels of this kind of pain.

It’s hard to accept this kind of pain will be in my life forever or until they find a cure. It’s hard to accept that I will forever have limitations and that there will be people and doctors that don’t believe me. It’s hard to accept that people will leave my life because they can’t take this illness and what it does to me. It’s hard to accept that loved ones will not listen to you when you say you’re in pain because they’re sick of hearing it. It’s hard to accept that those same people will turn around and say to you, “Well, I’m tired and I hurt too.”

It’s hard to accept that you are not meant to do what you were born to do. It’s hard to accept that you can’t work and that means that you have no value. It’s hard to accept the fact that you can’t make money and support yourself. It’s hard to accept the notion that staying home is not for the weak, the mindless and the useless.

It’s hard to accept all of this. I don’t mean to say that anyone who chooses to be a stay-at-home mom is mindless or useless. I was a stay-at-home mom and cherished every moment. There is something magical about childhood and I was fortunate enough to be able to stay home with my kids . What I mean is that I have that Type A squared personality. I work hard, play hard and rest hard. When I got sick, I got sick very hard. When I got out into the work force (which I didn’t want to do, just as a 411) I put everything I had into my chosen profession. I had to quit, I didn’t want to quit. I loved it. Now that I can’t do it anymore I feel mindless, useless, weak and isolated. I enjoyed the work and the money. Then I became full time stay at home mom again, and I can only Halfway do that-between the crippling pain, the debilitating fatigue, and the all encompassing sleep.

I have a friend who said laughingly, “I don’t fear death. I fear poverty.” I know EXACTLY what he means by that statement.

I’ve read that in order to gain victory over pain we should welcome it. We should respond with wisdom to the pain. Pain is a messenger. Suffering happens when we refuse to welcome the pain. Well being will come when we live in harmony with ourselves and the world around us.

What a load of crap.

I will NEVER welcome this kind of pain. I do not believe and will never believe that by welcoming this horrific pain will help me overcome it. People who write this crap probably have never been in this kind of pain or they’re on major illicit street drugs.

Welcome this crap?

Are they kidding?

Well, there’s another thing that is hard to accept.

Finally, someone’s on our side ?!?

President Obama takes an interest in chronic fatigue syndrome
Just in case I did that wrong, you can cut and paste the link below.


Just when you needed me most…

So I’m going through a med change right now and I feel like absolute Hell! The 90mgs of morphine ER seemed to have stopped controlling my pain on any level, so I went to talk to my Dr about doing something about it. His suggestion , based on the amount I have taken for the last three years, was that maybe we should switch it up and try the fentanyl patch instead for awhile-and if it didn’t work out-I could always switch back after a month or so. He assured me the switch would be simple. As I am getting slightly more medication from the patch.
Here’s the problem. I totaalllllly feel like I am in the midst of withdrawals from the morphine. I have every symptom, from the chills and sweats, the shakes and aches, the nausea and multiple trips to the bathroom. The last two days have been horrid. I feel like my brain is underwater and I’m so lethargic I can barely move. I’ve scoured the Internet and can find no one else with a similar situation . I just don’t understand what’s going on inside my body chemistry !!!!
So in the midst of this, yesterday, my Darling Son who I’ve mentioned in previous postings, gets caught by my husband, smoking weed on his way home from school.
Are. You. Fucking. Kidding. Me.
I want to kill him. All these years I’ve wanted to try medical marijuana but haven’t-because in my husbands head he thinks that would be giving the children a free pass to do it themselves.
After this damned kid has watched his oldest sister destroy her life and tear apart this family and rip my heart out of my chest More than once because of her drug problems.
After everything we’ve done for him this year , killing ourselves to get him into the best school in the area, driving him and his friends 20 miles one way and back to band camp every day for 3 weeks. Becoming fully vested and involved in the band, the booster club, taking LOTS of time out of our lives for his success !!
he goes and does this to us!
He’s meeting with his psychiatrist tomorrow. Some part of me hopes they admit him for a few days just to scare the bejezzus out of him. Part of me wanted to call the police. Part of me wants to homeschool him so he can’t get away from my watchful eyes. Part of me wants to strip his room down to akin to a jail cell. Leave him with a mattress, a sheet, and a blanket, for the rest of the school year .
I don’t know whatI’m supposed to do. he’s 14!!!!

The last time I ever saw my granbaby , but I’ll save that for another post….


Long time, no post…

Sorry, I know it’s been awhile. With the kids going back to school, trying to care for my elderly grandfather , dealing with the responsabilities of living life day to day, Drs appointments and family stress/drama, it can get hard to keep up. For some reason this blog, the one cathartic thing that helps me ‘get it all out’ seems to be the first thing to fall by the wayside when the proverbial poo hits the fan. I’ll do my best to remember you, Dear Bloggery.
Everything’s a work in progress.
As I said, the kids have returned to school, sort of. Kellie was unable to get the classes she wanted at the local community college, so she’s taking welding as a random elective to get her foot in the door for next semester. I look forward to strange plant stands and such in the future, and at least it won’t overwhelm her. Whatever is going on with her mental status is making the rest of us want to jump off a bridge lately. She’s been under the same family stress courtesy of my oldest daughter , which I understand, but I don’t know if it’s that, her medications, or her mental illness.
Gavyn’s return to school has meant a lot of long hours courtesy of Marching Band. Toss in the school district redid the school boundaries and he is being bussed past 3 perfectly acceptable high schools to a new one 17 miles from home. He’s off his ADHD medication and the Drs have decided to try an antidepressant. The child has zero impulse control, constantly misbehaves, can’t sit still to save his life, is receiving NO Treatment currently for his Tourette’s Syndrome or ADHD, and gets up at 5:00am daily. He doesn’t return home until we pick him up at 9:00pm 3 days a week. I wonder how long it will be until he cracks and crumbles under the pressure. But on a high note-his mood swings and anger are much improved courtesy of depression treatment. Now if we can just keep him from flunking out because he can’t concentrate on AnYtHiNg. He also now wears his pants around his thighs with his entire underwear covered Ass hanging out, pushing every button I’ve ever had…..

As for me and my daily Fibromyalgia Journey….
Lately, everything’s bad. I hurt. All. The. Time. The 40mg of morphine I’m taking daily don’t seem to be doing Anything anymore. I’m popping Norco just to take the edge off 5 times a day. My quality of life is in the shitter and I’m so fed up with Drs I want to punch them all in the throat. After all the sleep testing-I brought home a monitor for 12 hours and wore it, I did an in house overnight study, I wore a different monitor for 3 weeks, day and night, I did a 24 hour in house sleep study which required no straight sleep, just a series of 8 two hour naps preceded by urine tests and followed by blood tests during that period, a trip to a pulmonologist AND a cardiologist during that time per they’re orders, blood gas draws which hurt like a fucking beast, and yet Another 12 hour overnight sleep study- just trying to get a fucking diagnosis of Chronic Fatigue Syndrome (Which I KNOW DAMN WELL I HAVE) they sleep Drs in they’re infinite wisdom came to the conclusion that I have……………

INSOMNIA!!!!!(really? Well no shit Sherlock)

I’ve had INSOMNIA since I was 12!!!
They’re cure is No Naps, sleep no more than 7 hours a night, and go sit in the sunlight in the morning to “wake myself by absorbing the suns good wake up chemicals”.
Give me a fucking break.
I don’t have INSOMNIA, I have Fibromyalgia. I don’t get up 15 times a night because I enjoy it and I like watching infomercials, I get up because I’m stiff and in so much pain I want to throw myself in front of a moving bus.
And I often feel “unplugged”, like I can’t physically move, eat, breathe, or even pee, and will slip into a deep comatose slumber that at times has lasted (I kid you not) 42 hours without having done a single one of the afore mentioned activities that will take me days to recover from because I have CHRONIC FATIGUE SYNDROME.
And I didn’t even go to medical school to figure that out, nor am I a frickin genius from another country!!

Or maybe it’s neither. I’m starting to hypothesise that maybe, just maybe I don’t have Fibromyalgia, or CFS, or any of the 26 other things I’m diagnosed with. Everything’s been getting so much progressively worse lately, my brain keeps frikin telling me “IT’S GOT TO BE SOMETHING MORE”!!!!! There’s GOT to be more to it than JUST fibromyalgia. It’s worse. It’s something else. Fibro isn’t supposed to get steadily worse, and it’s not supposed to be this Severe. I HURT ALL THE TIME!
There’s got to be an answer out there!
There has to be!
I refuse to give up. I want my life back! I’ve got to figure this out, one way or another!
It’s MY life! I don’t want to live in this half dead body anymore!

(I’ve got so much more to write about, please comment if you want to hear it, otherwise I just feel like I’m rambling on about nothing to no one. Please and Thank You)



Imagine how you’d feel if you stayed up until 5am drinking and smoking, going to bed and then getting up again at 7am. That’s how I feel every morning, even if I went to bed sober at 8pm. Imagine how you’d feel by 2 in the afternoon. That’s how I feel by 11am every day.

Imagine how you’d feel if you had a really bad flu ALL the time, and then you got a cold on top of that. That’s how I feel all the time. Then I have to hope I don’t get a cold as well.

Imagine how you’d feel the day after you ran up 10 flights of steep stairs. Then you walked up another ten flights on you hands. That’s how I feel after walking from my car to the to the front door.

Imaging how you’d feel if you ate some really bad chilli. Your stomach churning and all the visits to the bathroom. That’s how I feel most days whether I eat or not.

Imaging how you’d feel after a really loud rock concert. Your ears ringing so loud you can hardly hear anything else. That’s how I feel all the time.

Imagine how you’d feel sitting on the sidelines at your child’s sports event. Watching all the other parents helping or joining in, while you just sat there, because it hurt to much to even stand there and watch.

Imagine how you’d feel if you jumped off the roof, holding onto a rope, that jarred you to a stop just before you hit the ground. Imagine how your arms would feel. That’s how mine feel after typing this.

Now, imagine how you’d feel if no-one believed that you felt all those things and told you it was all in your head. Imaging if, even if they believed you, there was no treatment or cure, and in all likelihood it was going to get worse. Imagine if you still had 30, 40, or even 50 years left to live like this. How depressed would you be?

Arguing teens-Pain flare-Family vacation ?

I swear, I will never again take my two argumentative teens on a “family fun” vacation again! These two little Rodents have been at each others throats the Entire Time! All they’ve done is argue about every single teeny tiny thing, bitch that they are hungry every five minutes, and demand that I entertain them, Constantly!!!! They are 18 & 14 for chrissakes!!! Quit fucking fighting for five minutes and go DO something !!!

Needless to say, my fibromyalgia has kicked into a full gear flare. I hurt so bad I just wish I could beam myself home and avoid the four hour car ride sitting in the middle back seat .(the middle? Why you ask? To seperate the kids) The pain in my right hip, caused by my Sacroiliac Joint, is somewhere between back labor and and being repeatedly shot. The whole area is one giant cramp-charley horse, and nothing’s touching the pain. It’s made my foot numb in a painful way and radiating up and down my leg, and across my lower back. Chalk it up to all the walking, all the stress, and the shitty mattress in this incredibly expensive room.
I may die before I get home.
I think I might rather die before I get home.


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