Fibronaut At Home

Ouch-ouchitie-ouch-ouch! Ouch! Ouch!

Hope you read the title the way I sing it in my head.  I’m short-posting because of my constant friend Pain.  I’m having the skin-sensitivity where a brush of someone’s hand can feel like a scrape.  My little girl’s feet felt painfully rough (they are smooth) against my legs and just someone leaning against me can feel like they punched me.  I thought I’d feel better in the summer but the constant weather changes (we have a chance of thunderstorms almost every afternoon) and the high temps are making me ache.

 Gluten-free since June 19, 2012.  Pro’s of gluten-free are as follows: eating better, more fruits and veggies, had sex 3 times in one week as opposed to 3 times in 3 months before.  Con’s of gluten-free: I’m really hungry, we have Oreo’s and I can’t eat them, and I’m really hungry.

Gotta go before my sweat runs into the keyboard and I’m replacing another laptop (I orange-juiced my previous laptop in a daze of fibro-fog).  It’s been over 100 degrees for 5 days straight and we only have one window air conditioner.

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Gluten-free for me?

I went to my acupuncturist yesterday and she asked me to try going gluten-free for a month.  She also wants me to cut out as many refined sugars as I can.  The main reason I haven’t tried this before has been the cost.  I can’t justify spending so much just on food for me.  I also don’t want to get my hopes up again, just to have them dashed.  That probably sounds silly but with every new thing a doctor has had me try or  family has told me to try and every failure, I feel more and more discouraged.  I feel like I am at a place of acceptance of my situation and it is scary for me to open my mind to a new treatment.  I’m not sure that will make sense to anyone and I’m not sure if I’m explaining it correctly.  I’m in a flare right now, so the fog is pretty thick.  Even though I slept well last night and remember dreaming, I went back to bed after waking and eating breakfast and I feel like I’m spacing-out all the time.

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Stress Relief

I have just experienced the most wonderful stress relief all because I was able to make an appointment for my doctor for tomorrow!!!  I have a bad habit of not noticing when I’m about to run out of medication.  I’ve been meaning to check how much Lyrica I have and kept forgetting but suddenly realized how light the pill bottle felt on Saturday.  I, thankfully, get my Lyria free from Pfizer through their Connections to Care program so all I have to do is get my doctor to fax my prescription in and I’ll have my medication, hopefully before I run out.  If you have never run low on Lyrica and attempted to make 3 days worth last for five then you are lucky.  The last time this happened I felt like I was on fire, I couldn’t move and then I had the scariest dream I’ve ever had.  I just remember the devil talking to me and then I woke up screaming at the top of my lungs.  Not fun.  I was just starting to write a post about how stressed I was and then I got a call from my doctor’s office to schedule an appointment and they had a time open tomorrow.  That is true stress relief.  If it wasn’t for fibro-fog I wouldn’t have all this needless stress, but I wouldn’t have this enormous relief after I get things worked out.  I would type more, but I feel like I’m rambling and my neck is starting to hurt.  Out!  Damn spasms!  Out!

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Fibro Misconceptions by Purple Law Lady

I just read Fibro Misconceptions. by Purple Law Lady.  If you don’t already follow her blog at fibromodem.wordpress.com then I highly recommend it.  She is a Fibro Fighter and an inspiration to me.

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Milk

As a continuation of the funk I’m currently in, I’ve had another let down this afternoon.  My Mommy called and, in what I believe is her Mommy ESP, let me know that she met someone with Celiac disease who’s pain has been reduced by consuming raw milk. She and another person have bought part of a cow and instead of getting the cow’s meat, they get the cow’s milk.  Rewind a couple weeks, and in my attempt to visit as many fibromyalgia blogs as possible, I came across another bloggers post about reducing pain by consuming raw milk.  (I would do a link to their post or mention their name, but I’m not sure if they’d be okay with this and I don’t know how to do the link thing but she liked my Funk post from today which I saw right before I started typing this.  Coincidence?)  I was surprised and encouraged when my Mommy mentioned this because I really wanted to try it.  We happen to know several dairy farmers so I thought it’d be easy-peasy (I’m all about the made up words today according to Google Chrome) lemon-squeezey.  Unfortunately, my hubby initially nay-sayed (if that’s a word?) the request because he thought there was no way any dairy farmer would do this.   However, after hearing the whole purchase-the-cow-then-you-can’t-get-in-trouble spin, I thought we’d be good to go.  Nope.  He’s still not on board.  I’m disappointed because all I want is to feel better, and no matter how silly an idea seems, if I want to try it, I would appreciate some support.  I don’t pay the bills and had I known he was paying the bills at the time, I would’ve waited to ask, but still.  That doesn’t mean I don’t get a say.  I do the laundry.  I could make unfortunate things happen to his favorite pieces of his wardrobe.  I feel so strongly about this because this could be life changing not only be but the whole family.  I’m taking 800 mg of ibuprofen three times a day and he is the one always telling me that I need to drink more milk.  I’m not sure how much this milk would cost but it doesn’t hurt to ask.  Right?  Where my girls at?  Can I get a what-what?  Girl power!

Sorry.  Lost track of what I was talking about there.

Ok.  I had to update this post.  My hubby came home and after dinner, got right on the internet looking for cow-share programs.  Holy expensive milk batman.  We just can’t afford to try the raw milk at this time.  Thanks for reading and yes, I am aware that I need to be a little more patient with my hubby.  He’s not superman and I’m no Lois Lane.

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Funk

No. Not B-O funk.  And no.  Not George Clinton and Parliament Funkadelic funk either. Now The Black Eyed Peas song “Smells Like Funk” is stuck in my head, but that’s not what I’m writing about either.  I’m in a what-am-I-good-for funk.  I’m in a even-if-I-could-work-no-one-would-want-me funk.  I’ve been seriously considering whether I could return to work.  Not because I feel well enough to but with the hope that this new doctor I’m seeing next month will be able to kick fibromyalgia’s butt and I’ll be feeling like my old self again.  As I am right now, with the spasms and pain, not to mention fatigue, I know that going back to work would be impossible.  It’s funny that I think of fatigue last, when it is the biggest obstacle.  It’s hard to concentrate on what you’re doing when you’re having spasms, which can be painful or when you are in pain, period.  But it is near impossible to concentrate, let alone stand, when you are fatigued.  I’m not talking just a little tired, although I feel tired all the time, whether I’ve slept good or not, whether I’ve taken naps or not.  Fatigued means having zero energy, dizzy when standing, dozing off all day, feeling like you can’t move your arms or legs, feeling like you have a pound of bricks for brains and if your head weren’t attached, it’d go rolling off your body.  I cannot remember the majority of April.  Me and my three-year-old slept in till 10:30, we rarely went anywhere and I had a couple of trips to pick up my kids where I honestly felt like I might fall asleep while driving.  Now that we’re into June and I haven’t had any fatigue days, just pain and spasms, I’m wondering whether I can go back to work.

All I need is an employer who’ll allow me to take naps during the day, sit in a recliner so I can keep my feet elevated, and will allow me to take any sick days I need when I’m fatigued or in too much pain to work.  If the barometer is shifting, I’ll need that day off too.  Also, no stress.  I cannot handle any extra stress.  Forget socializing, because I don’t do that.  Unless you want someone with no TMI filter talking to your most important clients and board members?  Don’t I sound like the ideal candidate?

So far, the only job I can come up with is stay-at-home Mom and I’m already doing that for free!  I take that back.  I do get paid in hugs and kisses and little kid jokes.  My kids are the best and I wouldn’t trade them for anything.  Maybe a hot tub.  I really want a hot tub.  Joking!  Only joking.  The two older ones are pretty much self-sufficient.  Unfortunately, they are masters at pushing each other’s buttons, not to mention mine.  They almost make up for all the fighting, both physical and verbal, with the help they give me with the three-year-old.  In August they’ll go back to school and the little one will go to preschool, then what am I going to do with myself?  Will I finally be able to do my Deepak Chopra’s Leela game?  I really liked it the one time I got to play it.  Will I finally be able to go to the heated pool in Greeley?  The drive to Greeley and back might make the exercises in the pool pointless.  Right now, the majority of exercise I get involves laundry, dishes and picking up the crap everyone else leaves laying around.

So my funk continues…and that song is still stuck in my head!

 

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Help! Please!

I already posted this on facebook, but I’m hoping that I’ll have better luck getting good information from bloggers with fibromyalgia.  My pain specialist will not treat me for anything but pain. I’m trying to get a referral to a neurologist but my pcp doesn’t think that any neurologist will agree to treat me because I don’t have any neurological condition except fibromyalgia. My pcp suggested that I call my insurance company so they can help find me a rheumatologist to treat me but they aren’t sure that they’ll help me either. What the *@#$% am I supposed to do now? Call the insurance company I guess, but seriously, how stupid is it that no one wants to touch a condition that affects millions of people?  It’s fatigue and depression and everything else besides pain that I need help with.

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Acupuncture and Meditation

I love going to acupuncture.  Even though I still hurt and it is obviously not helping with my pain or my fatigue, I feel such an emotional release, and such a release of tension that it is worth it to me.  Yesterday some of the needles hurt and one of them hurt so badly that she had to move it.  I don’t want to put anyone off trying acupuncture because of that.  I’ve been four times and out of probably 50 needles over all those visits, only two of them have hurt like this.  If you’ve read my “Note to Self” post, then you know that acupuncture also has helped with my tummy troubles.  The benefits, so far, outweigh the minimal discomfort.  Acupuncture is the most relaxing hour that I have.  Even when I’m home alone, under my heating blanket, I don’t feel the peace that I feel when I am lying there, with the soothing music and the lights dim and lots of needles sticking out of me.  I ruined the image with that last part, right?  You don’t feel the needles and if you just concentrate on your breathing and keep your brain shut off, it will amaze you how relaxed you are.  The next part is TMI, so stop reading Mom.  I felt so good after the session yesterday that I was actually horny.  I cannot tell you how wonderful that was!  If only I could get the correct muscles to spasm instead of the wrong ones (if you get my meaning-wink-wink).

In other becoming-one-with-myself news I’m trying a new game for the XBOX Kinect called “Deepak Chopra Leela”.  It is supposed to be a meditation game and supposed to be able to tell if you are relaxing or breathing properly.  I haven’t figured out how I’m going to play this without interference from my three-year-old or my older two who are out for summer break but I’m really looking forward to trying it.  I used to love playing the dancing games, but I can’t anymore and I’m hoping this game will be my new thing.  I’ll let you know.

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Driving

I feel like a failure.  I hate to say that, but I really wanted to be able to take my kids to lunch with their Daddy today, and I’m not because I hurt too bad and I know that I wouldn’t be able to drive that far and sit through lunch and then drive back.  Twenty miles doesn’t seem like it’s that far until you have muscle spasms in your legs that could potentially cause you to speed ahead when you mean to brake.  Or you have so much pain in your knees or hips or ankles that you are driving with one leg.  Suddenly you have a Fibro-fog brain fart that is so intense that when the light turns green, you rev your engine (Don’t worry.  You’re in park because you can’t hold your foot on the brake that long so you put it into park at every red light) instead of pressing your brake to take your car out of park.  Or your arms, hands or shoulders hurt so bad that you can barely grip the steering wheel, let alone turn it and even holding your arms up for that long of a drive, even if it is practically a straight shot and all you do with your arms is navigate a straight line and put the car in and out of park.  Or your neck muscles have such bad spasms that you have a headache and you can’t turn your head from side to side to even back out of your driveway.  Your feet hurt so bad that pressing the pedals feels like you’ve got tacks in your shoes.  Your Fibro-fogged brain is zoning out on the cows and the farm houses and the trees and whatever else catches your eye.  Distracted driving?  You bet.  Then somebody calls you or texts you.  You don’t answer, they become worried and they call again.  A month or so ago I was driving to a doctor’s appointment and my Dad kept calling me to make sure I was doing okay and I probably snapped at him and said something rude like “I can’t drive if you keep calling me.  Stop calling me!”

I know that it isn’t my fault that I have fibromyalgia or that I have all this pain but I hate disappointing my kids all the time.  Sometimes  I go along with whatever we’re doing even though I hurt, just so I have the experience.  Maybe I hurt, but I still get to witness all my family’s joy.  I’ve always been more of a spectator and I’ve never really had a problem with it.  For me, my driving is a safety issue.  I have to look at the broader view and if I already hurt, driving is not going to make that any better.  I think my kids understand because they didn’t seem too upset about not meeting Daddy for lunch but sometimes they say they’re okay and later, it all comes out.  Since I decided to blog about this, my legs have been under the heated blanket with a heating pad on my knees.  My legs feel better now (although I haven’t tried walking yet) but even though I have my arms propped up, my neck hurts and I’m getting painful spasms from my neck all the way down to my finger tips.  It’s a good thing I’m pretty much done here, because my body can’t handle one more minute.  Fibro-fighters unite!

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