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)