Fibronaut At Home

GOOOOOOOAAAAAAALLLLLLL!!!!!

I just had to.  We love watching soccer, but don’t actually watch a lot of it.  The World Cup has reminded us of our love for the game.  With our budget, we are on the family plan of Directv, and consequently, most of the games we watch are on the Spanish channel.  We don’t speak Spanish, but they sure add some excitement to the game.

Moving on….

This post has been simmering in my mind for a while now.  Setting goals for myself has been one of the most effective tools in my road to wellness.  I had to look back at my journal to find these.  I started simply, picked  goals that were the most important to me.  1.  Write in journal.  2.  Meditate.  3.  Yoga.  4.  Hug, kiss, love family.

These were my first goals that I set on November 7, 2012.  It is awesome to look back and see how far I’ve come!  At that point, I had started recording what I ate and what I did throughout the day to try and track where my pain was at and really focus on what I was putting into my body.  It really gave me a good idea of what I needed to change in my eating habits.

I found a revised set of goals on July 9, 2013.  1.  Shower.  2.  Journal.  3.  Meditate.  4.  Love.  The simplicity of this list may seem pointless to some, but at that time, I couldn’t handle more than that.  Those were the things I knew I needed to do to heal myself.  

I found “BABY STEPS” written in the margins a couple times and also this list of steps that I felt would help me “be healthy and happy both mentally and physically”.  1.  Focus on the positive.  2.  Offer encouragement.  3.  Yell less, hug more.  4.  Be a better listener.  5.  Be conscious of what you say.

By August 6, 2013, my goals had expanded to add friendship, blog, sew and clean.  I stopped writing in my journal after that.  At this point, I was trying to add getting my kids to school in the morning to my list.  That turned out to be a little too much for my energy level and our budget.  My husband was going that way so it made more sense for him to take them.  I let myself go backwards at that point.  I felt like I had no reason to get up in the morning.  Even if your life changes, there are certain things that are good to keep.  Getting up in the morning with my kids gave me time with them and I felt better with a set wake up time.

February 2014, I got back to my sleep schedule.  I set my alarm for 7 am whether I have anywhere to go or not.  I try to go to bed at the same time, knowing that even if I don’t or if something wakes me up (like my 5 year old kicking me in the face), I don’t have to let that ruin my day.  March 31, 2014, I started journaling again, keeping track of what I did all day; writing down what I was doing and the time I started.  My journal sat on the kitchen counter.  I was amazed by all that I accomplished in a day.  Writing down the time I started something made it crystal clear how long or short tasks took me to complete.  When you are on the internet or watching television all day, you lose so much time.  Tracking my time made me aware of how I was spending my time and let me set goals to spend that time better.

I set goals again, but they expanded beyond what I ever thought I’d be capable of again; feed the cats; straighten the bed; shower; clean the cat litter; dishes; straighten the bathroom.  I started with those things and built upon them.  It became a challenge to me.  I even wrote “no excuses” a couple of times.  There was no judgement if one day’s list was longer than another day’s.  Being kind to yourself, forgiving yourself and loving yourself is key.

May 21, 2014 was the last day I kept track of what I did all day.  I started to notice I was writing less and less of what I’d done with the time; not because I wasn’t doing anything, but because I was doing so much that it became tedious to stop by my journal all the time.  I feel so positive now, that I don’t need to chronicle every little achievement.  I can look at something, see the changes I’ve made in that part of my environment and feel pride in myself.  I don’t look at the things I do with a critical eye and I don’t talk down to myself.

I’m still the same person, I just look at everything differently.  I don’t wish things were different, I make them better, or I let it go.  It is a beautiful way to be.  Yesterday was kind of rough.  We did so much the two days prior and went to bed so late, that I was dragging butt all day long.  We went to a late lunch and then to an arcade/mini-golf place.  I mostly sat and read, while I let everyone else run after kids.  I just didn’t have any fuel in the tank.  And it was okay.  I was there, even if I wasn’t up to participating, I was there.

Today, I’ve already checked my garden, watered the lawn, posted to both blogs, and started laundry.  I have plans to finish laundry, weed the garden, do my Zumba DVD, and finish a skirt I started sewing last week.  I may even do more than that, but even if I don’t, it’ll still be okay.

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Finding A Workout that Works For You

*I am not a doctor.  Consult your doctor before starting any workout program.*

When I was first diagnosed with fibro, this was one of the biggest challenges I faced.  Every doctor I visited and every book I read said, “Do yoga.”  For me, going to a class was out of the question.  I was depressed and full of anxiety in relation to how others saw me.  My spirit was in the fetal position unable to handle anyone’s criticism, no matter how compassionate.  To me, no one understood the pain I was going through.  I checked out numerous DVD’s from my library and got seriously frustrated.  I couldn’t make it through the warm-ups on those DVD’s.  I gave up.  I told myself I wasn’t going to get anywhere exercising.  I told one of my doctors that I didn’t have time to exercise.  What I meant was that I had limited time in my day.  If I had the energy to do anything, it wasn’t going to be exercise; it was going to be something for my hubby or kids like housework or doing something with them.

Here’s what I figured out in doing housework; I was working out!  Every load of clothes I separated, every time I loaded or unloaded the dishwasher, I was exercising.  When I was warmed up, I would stretch out the muscles that were tightening.  I started to tweak the way I did some chores as I noticed that doing them more often made them easier.  Getting things done makes me feel good.  When I notice something out of place or dirty and I take care of it, BOOM GOES THE DYNAMITE, instant mood booster.  It was through housework exercising that I first started losing weight and inches.  (Getting off of narcotics and Lyrica and Cymbalta helped also.)

I also finally found a workout DVD that I could do.  That’s right.  One DVD is all it took to start getting my body back.  Healing Yoga for Aches and Pains started me on my path to wellness.  There are a lot of moves on the ground and sitting down.  I did hurt my back once when I got a little too enthusiastic with my stretching.  Go slow and don’t worry if you feel like you’re not really working out.  The best workouts don’t feel like workouts at all.  My favorite part is the last, where you are laying on the floor with your legs resting on a chair and just breathing.  That move always leaves me feeling centered and ready to conquer anything.

Now that I’ve been building my muscles, I’ve been trying some regular workout DVD’s.  I’ve always liked dance workouts and games.  We traded in all my dance games when I thought I’d never be able to do them again.  Now I want them all back.  I really like Zumba.  There are tons of options in the Zumba workout DVD’s and I’ve checked out a couple of them from the library.  My favorite dances are the salsa and the Mexican dances.  They have a special name but I can’t remember it and both times I tried to search for it, I even confused Google.  Ha!  There are some that I don’t like, so I skip them.  At first, I couldn’t figure out the Calypso moves.  They were too fast and there was too much hopping that I couldn’t figure out.  The last time I did a Zumba DVD, I tried the Calypso steps and was able to do them!  Made me feel great.  I love that they have choices between just dancing and having the instructors tell you what to do.  I started out learning all the moves.  Now I can do the dance party.  Just a warning, Zumba is addictive.  I find myself thinking of Zumba moves whenever I listen to music.  I always dance around the house, but now I’m Zumba-ing around the house.  My 5 year old loves it and is doing it too.

I’ve also tried a Hula DVD, Island Girl Dance Fitness Workout for Beginners: Hula Abs and Buns.  It is easy and low impact.  The most difficult move is a lunge move but you can always skip moves that you find too difficult or that might cause you pain.  I love this DVD because you learn an entire dance while working out.  By the end, you combine all the moves in a dance.  I am a fan of workouts that make me feel like I’ve accomplished something at the end.

After being turned off by all the corny belly dance DVD’s that I tried, I finally found one that I like.  There were several belly dance DVD’s that I couldn’t get through the first move they were so corny (Here’s looking at you Goddess Workout).  A huge high-five to my kids for not cracking up at the corniness of The Goddess Workout: Intro to Belly Dance before I did.  The DVD I did today was Belly Dance Fitness for Weight Loss featuring Rania: Hip Hop Hip Drop.  They go through the moves slowly at first and then speed them up.  You learn an entire dance with this one too, combining all the moves into a dance at the end.  If you don’t like Hip Hop music, don’t worry.  There isn’t any Hip Hop.  I’ve just requested Belly Dance Fitness for Weight Loss featuring Rania: Cardio Shimmy.  If you find something you like, look for other things like that to keep your workout interesting.

As with everything else in wellness, it is a learning process.  If one thing doesn’t work, try something else.  Also, just because something worked once, doesn’t mean it’s going to always be for you.  My example of this came through a DVD that I used to own pre-fibro and decided to try because I remembered how much I liked it before.  10 Minute Solution: Pilates used to be my favorite thing to do.  I did the 10 minute ab workout 2 or 3 days ago.  My abs are still screaming.  Pilates is definitely not for me at this time.  Maybe I’ll go back to it later, but right now it is not for me.  The belly dance DVD helped with the soreness in my abs, but I’ve learned my lesson there.

If you are doing a workout and there is a part of it that you dread to the point where it keeps you from working out at all, then don’t do it.  Find another option.  If you are bored by any of your workout, don’t torture yourself through it.  Don’t give up, find another way.  Try, try, try and try again.  I even ran today.  I was in my pajamas and trying not to get hit by the sprinkler, but I ran.  It didn’t even hurt.  I’ve even been thinking of going for a run with the kids.  Forget walking!

I don’t write this to hurt anyone else’s feelings or make you feel like you aren’t doing enough.  That is for you to decide.  If you think you should be doing more, then do it.  Encouragement!

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 Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes! 

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A Poem For Fibromyalgia

I just found out that April is National Poetry Month.  I wrote a poem about Fibromyalgia to celebrate.

A Lament of Fibromyalgia and Chronic Fatigue Syndrome

“Show me where it hurts,” you say?
Well, tell me, have you got all day?
Head, shoulders, knees and toes,
The pain it stays, it never goes.
Hips, back, fingers and gut,
Fibro is an actual pain in the butt.

Insomnia keeps me up at night,
Then all day long, it’s sleep I fight.
Fibro-fog’s the funnest part,
I forget what I’m doing before I start.
With all of the pills I take every day,
Why won’t the pain and fatigue go away?

Is this fibro-diagnosis junk?
Am I just in some sort of funk?
Is all the pain inside my head?
Maybe I should try this or that instead?
Until you’ve held spoons in your hand,
Then you cannot begin to understand.

Invisible, my illness may be,
But watch me closely and you will see.
I cringe when I move, stand or walk.
My face hurts whenever I eat or I talk.
I conserve energy however I can.
My good moments are a flash in the pan.

Yoga, acupuncture, grounding, meditation.
Name it, I’ve tried every new health sensation.
Lyrica, Cymbalta, oxycontin, oxycodone,
Flexerall, Fentanyl and hydrocodone,
All these and more I’ve tried.
They made me wish that I had died.

Write in a journal, and go way back,
Try to figure out why you’re out of whack.
Join a support group, listen to others whine,
Then you’ll realize you’re doing fine.
Take it easy, take it slow,
Breathe deeply, calmly, go with the flow.

Gluten-free is the way to be?
I don’t have the time or the money.
I want to be healthy and eat right,
But our budget is already way too tight.
Sugar and caffeine are bad they say.
When I’m dead, you can take those away.

My Cognitive Behavioral Therapist
Told me what others think of me is none of my business.
But when you can’t work and have to prove you’re sick,
What others see is what makes you tick.
Especially when you feel okay,
You struggle with guilt for feeling that way.

Different doctors say different things,
Depends on which drug company is pulling their strings.
Once I say Fibro or Chronic Fatigue,
They act like my health is out of their league.
I just want to be treated like a human being,
Not like the head case they keep on seeing.

My house, car and life is a mess.
I’ve got too much anxiety and too much stress.
Whenever I manage to take a shower,
Rest and recovery takes an hour.
My definition of dirty and clean
Do not mean what you think they mean.

Every activity is well thought out,
Even then, there is always doubt.
What if I start to hurt half way through?
How long do I rest before I can continue?
What if I need more than a short nap?
What if I still feel like crap?

There is a storm coming in day after tomorrow,
The pain starts today and the fatigue will follow.
No matter the temperature, no matter how nice,
I do way too much and pay for it twice.
I need to move to a climate with nary a storm,
Where the sun is always shining and it’s always warm.

I could go on and on about all this crap,
But I’m starting to yawn and it’s time for my nap.

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I Am A Hot Mess

I’ve been avoiding writing in my journal like the plague.  Why?  Because if there is something I have to do that I feel most people don’t have to do, I act like a baby and suffer instead of just doing the damn thing that I know helps me.  I just don’t know why I sabotage myself.  I’ve always done this.  I feel like my happiness or anything good isn’t going to last, so why try?  I have the most wonderful husband in the world, but I’m just waiting for the other shoe to drop.  My Dad decided he didn’t want his family or his wife anymore and even though my husband is nothing like my Dad, my mind still tells me that he’s going to do the same thing.  

I’ve been making like an ostrich again.  If I have a problem, ignore it until it goes away. Well problems just don’t work that way.  And not writing in my journal has just made my anxiety that much worse.  I’m breaking out, I’ve chewed my lips till they bleed and my thumbs are a wreck from me picking them.  I have a meeting with a psychiatrist tomorrow for a psychological evaluation and I am freaking out.  The lady that made the appointment assured me that he is very nice but I am still freaking out.  A million what if’s are running through my head, which is so stupid when I really have no idea what is going to happen.

I had the kids conferences today which took every bit of energy I didn’t have.

Just because I need to do something to be whole, doesn’t make me a failure, right?  But that is what my mind tells me.  I know I need to do yoga and write in my journal and eat better.  But knowing that I need to do it, makes me want to prove to myself that I don’t need to do it.  I can remember as a kid being jealous of my Mom and the other girls who could eat a piece of toast for breakfast and be good until lunch.  That was one of my goals.  How messed up is that?  I just wanted a normal metabolism where I could eat and feel full for more than one hour and eat as much as everyone else did at a sitting instead of having to eat a bunch of smaller meals.  Not one adult understood my eating habits and I was punished more times than I can count for not finishing my dinner and being hungry later.  Luckily, my hubby understands and only comments on my sweet tooth.

I am a hot mess.

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One Year Blogaversary!

It’s been a crazy year.  Crazy highs.  Crazy lows.  Lots of jaw-dropping TMI and a few fat tears.  I’ve made lots of new friends, become re-acquainted with some old ones and most importantly, become re-acquainted with myself.  Besides starting my blog, I’ve also had some more memorable firsts.  Some were positive, like trying acupuncture, yoga, meditation, counseling, grounding and the hot amethyst crystal thingy my neighbor gave me.  Some were negative, like changing doctors, filing bankruptcy and becoming a disability insurance reject.  I’ve stuck with some of the positives, yoga and meditation.  The things I’ve seen as negatives have taught me more about the strength of myself and my family and really aren’t as negative as I thought they would be.

I have hobbies people!  I have a sewing machine, that I actually use!  I get all of my Mom’s material that I desire and have begun to feed a massive re-fashion habit.  I’ve always had reading but I’ve expanded my horizons this year by actually reading books that are *gasp* non-fiction.  I still read all my fun books, but it’s nice to have a little variety and be able to read my book in public without blushing.  I’ve been making a point to play some video games with my kids.  I just can’t play the fun dancing games I used to love anymore.  I love singing on Rock Band so I do that with my kiddos as much as they’ll let me.  My hubby plays Call of Duty Zombies and Halo 4 with all three of my kiddos and that keeps them happy.

I’ve made goals that I actually keep.  I hug and kiss and tell my family I love them every day.  I shower (almost) every day.  I do yoga or meditation every day.  I work on some housework every  day.  I write in my journal every day.  Some of these goals were harder than others.  Some of them I slack on from time to time.  The journal really kicks my butt some days.  I’ve learned to be more patient with me and the people around me.  Except in the morning.  I will never be patient in the morning.  The sooner the kids are out the door, the sooner I can take meds, eat breakfast and drink my coffee in peace and wait for those meds to kick in before I have to do anything, the better.

To my Mom and Mother-in-laws and anyone who ever changed my diaper as a child, you may want to stop reading here.

It wouldn’t be my blog if I didn’t drop some major TMI.  My hubby and I have been having the most wonderful sex lately.  We will have been married 13 years, this June and I just want to shout it from the mountain top that we are happily, hornily married.  The worst and I mean THE WORST part of fibromyalgia and chronic fatigue syndrome was not being in the mood and even when we did manage for all the stars to align, the kids to be out cold, and the bedroom door locked, not being satisfied at the end.  No O.  Horrible.  Being able to enjoy sex again, priceless. I’d like to thank my very understanding, patient and tireless hubby.  I’d also like to thank all the lovely ladies at the library who don’t even blink an eye when checking me out every erotic novel in the library’s stacks.  I’d also like to thank the one guy who works at the library for finally refraining from commenting on every naughty cover of every naughty book I check out.

Okay Mom etc.  You can start reading again.

I really want to thank my family and friends for all the love and support you’ve thrown my way this year.  I love you all and can’t wait to share more laughs, tears, smiles, hugs, fears and of course, TMI with you.

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Fibro Fail #…I Lost Count

I’ve been re-evaluating my plan of attack on my fibro.  It is a new year and it only took me 24 days to get to where I was ready to actually focus on what I wanted to accomplish this year.  That isn’t what this post is about though.  This post is about how I messed up my back doing a remedial yoga program that is for people just like me.  The DVD is called “Healing Yoga for Aches and Pains”.  I’d tell you the other info, but I’m feeling lazy and tired.  Google it.

The majority of the program is performed sitting in a chair, kind of like that lady on public television who does the exercises for older folks.  There is a brief standing portion and then you’re on the floor.  I’m pretty sure I could invite all the retired lady’s in my neighborhood over for a group workout and they’d find it easy and probably laugh at me behind my back.

There is this one stretch where you lie on your back, pull your knees toward your chest, lay your legs to one side and then turn your face the other way.  I forgot to breathe while moving into the stretch and then I just went for it.  In no way should I have stretched as far as the very fit and does-yoga-for-a-living lady on the DVD was stretching.  The rest of the program had gone so well, I think I got cocky.

Now I have pain all down my right side of my back and I’ve tried pain cream and a bath.  A special thanks to my hubby who rubbed the pain cream in for me and helpfully pressed on the huge knot and said “You’ve got a huge knot!”  I knew there was a reason I married him.

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Do-whack-a-do-whack-a-do

It has been 5 weeks since I’ve written anything.  Consequently, the little hamster in my head feels like he’s cornered with no chance of escape.  I’ve been fighting panic and anxiety.  My disability appeal with the long-term disability company was denied.  I haven’t been keeping my daily goal of writing in my journal or doing meditation or yoga every day but I have kept my goal of showering, washing dishes or laundry and hugging and kissing the kids and hubby and telling them “I love you.”

I have started seeing a therapist.  She is awesome.  This is my first foray into therapy so I wasn’t sure what to expect, but so far I am really liking her approach, which is holistic and I’m feeling positive that she can help me.  My parents even commented on how much better my attitude seemed and that was after only one session.  I was debating whether to write about this or not.  Then I read a blog post by Halfway Between The Gutter And The Stars and I felt like I needed to put this out there.  I realized that whether people reading this would judge me was not important.  Therapy is helping me.  I’m not a bad person because I need it.  I’m broken and I’ve been broken for a long time.  Taking this step was huge for me.

Whacks, according to my therapist, are those automatic thoughts that pop in your head where you put yourself down or others put you down.  So, here’s to whacking myself less and loving myself more.

Side Note:  If you aren’t familiar with Roger Miller, he is the best.

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Confessions (gasp!) of a Mommy with Fibromyalgia

My house is a disaster area and the next person who comments on it can clean it for me if it bothers them that much (hint, hint).

My 10-year-old and 8-year-old get themselves ready in the morning.

My 10-year-old and 8-year-old get their three-year-old sister ready in the morning too.  I do sometimes lift my head from my pillow to offer groggy, bleary-eyed and often unnecessary advice.  They are pros.

My husband gets himself ready in the morning (GASP!!!).

My husband gets himself out of bed in the morning (DOUBLE-GASP!!!)

I don’t do ironing.  Seriously.  Eventually the wrinkles smooth themselves out and that is what the “wrinkle-release” cycle on the dryer is for.

I always have laundry piled up, waiting to wash or dry or fold or put away.  Have I mentioned I really love the “wrinkle-release” cycle on the dryer?

My children (with the exception of the three-year-old and my husband) fold their own laundry and put their own laundry away.  Sometimes, they wash their own laundry.

I’ve made it one of my goals to do dishes every day.  I said it’s a goal, not a sure-thing.

Although my daughters and I require zero aim when using the toilet, the two who do have to “shoot for the target” and are therefore the most likely ones to cause the curious yellow stains around (and I mean AROUND) the toilet have NEVER (that I can recall) cleaned the toilet.  This isn’t really a confession, but a strongly worded hint.  I mean, really.  I only have so many “spoons” a day and to spend even a quarter of one of my spoons on the toilet is not only unfair, but cruel and unusual punishment.

My three-year-old gave me the nickname of “Sleepy-head-Mommy, wake-up!”

I don’t like to wash my hair every day and so I’ve gone poo-free so that my hair produces less oil and is less dry, requiring less maintenance.  I wash my hair with a baking soda and water solution and only put conditioner on the ends.  Don’t go “EWWW!”  I watched several videos on YouTube and read several blogs before starting this.  Google it.

I don’t clean the kitty litter until I either can’t stand it anymore or my husband complains about it.  I would now tell my husband to refer to the first confession on this blog but Alice The Cat is my cat and he’d probably let her outside for the fox to eat if I started asking him to clean the litter.

Sometimes, when I’m feeling particularly bad (pain, fatigue, PMS, depressed) and my children start whining, I let them do whatever they want.  Third bubble bath of the day?  Sure!  Play XBOX even though your room isn’t clean?  Why not?  Eat every junk-food item in the house in rapid succession?  Your Dad will be home soon so don’t let him catch you eating that.

My husband is moving my three-year-old’s toys to behind the couch to try to contain her mess to that area.  This isn’t a confession either, but I wanted someone else to laugh at him on that one with me.

“God made dirt and dirt don’t hurt” is my new motto.

Any and all word problems in my kids homework are saved for when Daddy gets home.

My three-year-old is potty trained but refuses to wipe herself after going #2.  She instead hollers “Mom!  I pooped!”  It sometimes takes me so long to get there to help that she has started singing to herself while she waits.  It’s almost like I’m on “Jeopardy”.

My kids have learned to read my lips.  Especially when I’m mouthing “Ask your Dad.”

If what I wore to bed the night before is sweat pants and a t-shirt, I’m probably picking up my kids from school in it.

Actually, I should clarify.  That was the old me.  The new me has a new goal of taking a shower every day and so I usually do have clean clothes on by 2:30 pm when I pick up the kids from school.  If I’m not going anywhere else, however, I immediately change back into my comfy clothes.  Also, showering is another goal, not certainty.

The only reason, besides company coming over, that I clean my living room, is so I can do my yoga or my “Deepak Chopra’s: Leela” on the XBOX Kinect.

I don’t procrastinate.  I just forget.  Until it is too late.  Then I remember.

How long does it take three kids, one husband and one fibro-fighter to clean a house?  I’ll let you know if it ever happens.

Wait!  I had a Celebrating Home party in March and my house was clean then.  Unfortunately, that is the last time my house was clean.

My daughter once took a moldy sandwich to lunch for school.  I swear that I checked that bread while making that sandwich.  I’m also pretty sure that this happened before my diagnosis but I’m still using fibro-fog as an excuse.

I’m pretty sure I’ll think of more of these gems after I post this, but if I’m going to meet any of my “goals” today, I better get my butt off the couch.  Besides, my daughter has a friend coming over after school today and I can’t see my living room floor.  I jest.  I can see my living room floor, it’s just covered with crap at the moment.

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I Love My Library!

I know the title doesn’t seem like it should have anything to do with fibromyalgia, but my library has been so instrumental on my path to wellness.  I’m not well yet, but I’m learning something new every day about fibromyalgia.  I can’t tell you how many books I’ve checked out on the subject and I just requested more.  The High Plains Library District in Weld County, Colorado is so wonderful.  Even if a book I want isn’t at the library in my town, I can request it online or have a librarian request it for me.  They make it so easy.  If there is a book I want to read and the High Plains Library District doesn’t have it, I let them know and they get it.  They also offer CDs,audio-books and e-books, which are especially nice for those with fibromyalgia because it is so much easier to hold an e-reader or listen on a laptop than to have to hold a book, hold the book open and turn the pages.  I actually gave up one of my favorite activities, reading, for a while because when I tried to read my hands would shake, I’d get painful spasms and I couldn’t concentrate on what I was reading because of this.  I now have a Kindle and I have perfected the art of book-propping to avoid hand and arm strain.

Here are some of the books I am looking forward to reading:

  • Fibromyalgia: simple relief through movement by Stacie L. Bigelow, M. A. (ISBN: 0471348023)
  • The Fibromyalgia Relief Book: 213 ideas for improving your quality of life by Miryam Ehrlich Williamson (ISBN: 0802775535
  • Figuring Out Fibromyalgia: current science and the most effective treatments by Ginerva Liptan, M.D. (ISBN:9780982833971)
  • From fatigued to fantastic!: a clinically proven program to regain vibrant health and overcome chronic fatigue and fibromyalgia by Jacob Teitelbaum, M.D. (ISBN: 9781583332894)
  • Reversing fibromyalgia: the whole-health approach to overcoming fibromyalgia through nutrition, exercise, supplements and other lifestyle factors by Joe M. Elrod (ISBN:158054326X)
  • What your doctor may not tell you about fibromyalgia: the revolutionary treatment that can reverse the disease by R. Paul St. Armand, M.D. and Claudia Craig Marek

 

I know that I’ve checked out some of these before but it never hurts to give something a second glance, just to see if you missed something or if you have an “Ah-ha!” moment.  Right now I’m reading The Fibromyalgia Handbook: a 7-step program to halt and even reverse fibromyalgia by Harris H. McIlwain, M.D. and Debra Fulghum Bruce, M.S.  Step 1 is “Start with medical treatment”.  Um.  Duh!  I’m pretty sure that upon waking with the kinds of aches, pains and fatigue that go along with fibromyalgia, the first place most of us headed was the doctor.  Included in this chapter are various methods of pain-relief like moist heat (Twice a day? How about all day?), NSAIDs, anti-depressants, muscle relaxers and every other drug that could possibly be available for fibromyalgia, as well as supplements (magnesium, malic acid, melatonin).  Magnet therapy and Human Growth Hormone, are mentioned, as well as creams, liniments, lotions, injections, TENS and everything else you could think of or have been told MIGHT help.

I haven’t read beyond this chapter for good reason.  How could a person read this and not be more confused than they were before?  Every type of possible pain relief method is mentioned and they could all work or they might not.  It’s up to the reader to figure this out?  Really?  First you have to find a doctor who is willing to try some of these things.  My pain specialist got me off of the narcotics, which I am very thankful for, but has no other suggestion for me beside yoga.  Really!  I just do yoga every day and I’m all better?  I did yoga yesterday, meditated for a while, but still had little to no energy, still had pain and still couldn’t sleep last night.  Maybe today I’ll try my Leela by Deepak Chopra on the XBOX Kinect.  Life with fibromyalgia really is all trial and error.  Unfortunately, the price for my errors often leaves not only me suffering but my family as well.  Mommy is grumpy/asleep/crying, the kids have to find their own dinner and the hubby gets no loving in any shape or form.  I think the Fibro Response and thyroid are helping with some of the sensitivity and some of the pain but I really need something to give my energy a boost.  Zoning out all morning and falling asleep after the kids get home is okay, if that’s the way it has to be, but there are so many things I could be doing if only I had the energy.  I could even consider going back to work if I didn’t wake up feeling like a Mack truck hit me every morning.  I think I need to re-read my goals/positivity post (It’s a lovely new day).

The point of this post was to say that libraries are great resources but I think I came around to say that you should try to educate yourself but do what works for you because with fibromyalgia, anything goes.  Unless it doesn’t go.  Then quit doing it because (obviously) everyone is different and even the doctor’s aren’t sure what works and what doesn’t.  And don’t get down on yourself if you have to take a nap during the day or you don’t have enough energy to do the dishes/laundry or yoga that you had planned to get done.  Do your best, even if your best is sitting on the couch and playing games on Facebook.  Tomorrow you’ll start taking names and kicking ass.  Today just may be your down day.

1 Comment »

Oh Happy Day!!!

Even though I had a ton of pain this morning I am now walking on clouds!!! Not just because I am listening to my dance music that I love so much or because listening to “Yoga Nidra” by James Jewell got me extra, pain-free sleep but because I weighed myself and even with clothes on I weighed 170lbs!!! Sorry for all the exclamation points but I am just so happy. Hopefully this lasts. I haven’t weighed myself in a couple weeks but my daughter told me two days ago that I looked like I was loosing weight and I realized yesterday that my tummy wasn’t quite so big so I decided to chance it and oh yeah, my face is thinner for a reason!!! I love you all!!! The changes I’ve made in the last month besides being gluten free include starting “Fibro Response”, a multivitamin that rocks and lowering my Lyrica to 300mg a day from 450mg and last but not least, I’ve been taking thyroid medication. I see Dr. Eckstein in Boulder, CO and he showed me a list of symptoms from low thyroid and I had almost every single one. Even though my blood tests showed normal, the symptoms matched. I am not a doctor and I can’t even begin to give medical advice but if you are not getting results from your current doctor, don’t give up hope! I still can’t get a thing done in the morning and tire too easily as well as experience pain, but there are ways of dealing. Don’t play the ostrich, be the lion. Tell your doctor what you expect and if they can’t be positive for you or offer you any kind of support besides a shrug of their shoulders, don’t take that! They work for us!
I’ll step off my soap-box now and say it again, I love you all!!! We can do it! If you are dragging your feet on meditation or deep breathing (yoga without the crazy western-style stretching), I beg of you to just try it. Yes, I did spend my morning on the couch, but I was concentrating on my breath not my pain.

PS: Google Chrome is trying to tell me that positivity is not a word. What’s up with that?

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