Fibronaut At Home

Day Dreaming

I was just looking at the houses for sale in the community that me and the hubby have always dreamed of living.  After all the coulda-woulda-shoulda’s and all the disappointments of the last couple years, it’s really nice to have dreams again.  I’m filled with hope.  Our day will come and hopefully we’ll appreciate it all the more.  For three years, my only focus has been fibro and CFS; How I’m feeling and not much else.  I feel like I have a new focus.

The hubby and I had a conversation while in a meeting the other day.  I found out that he isn’t all that concerned about me going back to work.  I just assumed that was the end goal.  Turns out he likes me staying at home, taking care of the kids and me.  How lucky am I?  For now I’m just home with the kids for the summer.  Next year I’ll try my hand at volunteering at their schools, maybe join the PTO.  It’s really fun to torment my 12 year old that I can’t wait to see him when I volunteer at his school next year.  Maybe I’ll have to start using that as a reward; Do this for me and I won’t show up at your school next year.

I’ve even been socializing.  GASP!  I’ve been socializing and not over-thinking every conversation or re-playing every moment and judging myself.  If I find myself starting that mess, I just say out loud, “What other people think of me is none of my business.”  Sometimes, I even Richard Smiley it and go look in the mirror.  Say it with me: “I’m good enough.  I’m smart enough, and doggone it, people like me.”

I still want to write on my sewing blog more.  I let it go as long as I’m taking the time to sew instead.  I have lost a little weight and gained a little muscle, so I need to take in some of my clothes too.  I’ve even been doing workout videos.  Real ones.  Not just yoga for aches and pains and arthritis and older people.  I did Zumba and I did a hula one.  When somebody tooties their flutie, I gots to shake my booty (Donkey from Shrek), and now I can do it without hurting myself.

My house is clean.  This deserves it’s own paragraph because, holy crap, it’s freaking amazing.  It’s clean and I did most of it.  The trick is, once you get something clean, you clean it again before it’s at the FUBAR level.  My living room gets vacuumed every other day and the toilet gets cleaned whenever it looks even a little bit dirty.  I do dishes after every meal and I do laundry twice a week.  I don’t sit down on the couch.  That used to be my spot.  I close all the recliners, fold all the blankets and stack the pillows, so I’m not tempted.  As soon as my bed is empty, I make it.  I am much more reluctant to mess it up after I take the time to make it pretty.

I’ve struggled a little with people’s reactions to how much better I’m feeling.  It’s not a miracle, just a lot of little things that I’m doing right.  I don’t allow negative thoughts and I shake off any negative feelings.  I stay positive and when I feel myself slipping, I write in my positivity journal and I listen to my upbeat, encouraging music.  I started small.  Small goals and small jobs around the house.  Every day I added new goals or I cleaned one more thing.  I’m going to paint a sign to hang above my front door that says, “Make today awesome.”  I want my whole family to experience the happiness and contentment I’m feeling right now.  I didn’t write about this sooner because I didn’t want to jinx it.  Now, I’m not going to shut up about it.


Where Do I Go From Here?

I received my letter detailing my Social Security unfavorable decision.  I received it Friday and finally got the nerve up to ready it today.  I didn’t want to ruin my weekend and I already had enough anxiety about going to Jury Duty on Monday.  Jury Duty went better than I expected.  The Jury Commissioner had a great sense of humor, which made everything easier.  I had to stay all day, but we had a lot of breaks in the morning, so I was okay.  The afternoon dragged on and on and I hurt much worse than I had in the morning, but sitting on a wooden bench, even with a back, will do that.  I still hurt today and I’m still tense, but that was to be expected.  I was able to stay positive about the whole experience.  I wasn’t picked to be on the Jury, but felt like even if I had been, I could have handled it.

Back to the real reason I’m so tense today.  Basically, the judge said I wasn’t believable.  Mostly due to the opinion of the first neurologist I saw, Dr. David Ewing.  If you are unfortunate enough to come across this doctor, run (or walk speedily, whatever works) in the opposite direction.  Nearly every lady with fibro that I know, when I tell them he was my doctor, they curse about him, say he’s the worst doctor for fibro or have some negative story about him.  Even my attorney has heard the horror stories.  If you are seeing a doctor who doesn’t listen to you and refuses to explore any other options than medication, same thing.  I’m not knocking fibromyalgia medications, I take prescription medications.  In my opinion, fibro and CFS require a doctor to think outside the box.  The thing that helped the most with my CFS has been thyroid medication.  No other doctor would even refer me to a doctor for my thyroid.  Even the doctors that diagnosed me with fibro and have seen me more recently were considered less credible (not sure if that’s the correct word) because the judge thought they based their opinion on my complaints.  He also said that there were no tests showing a reason for my pain and acknowledged that in cases of fibro and CFS that there aren’t.  Apparently, I only walked as if I was in pain some of the time.  I also told them that it doesn’t always hurt to walk, but whatever.

I feel discouraged.  I don’t think I can come back from a judge’s opinion and Dr. Ewing’s opinion that they don’t believe that my pain is to the extent that I’ve reported.  I’m pretty done with it.  I know a lot of people will tell me not to give up, but I don’t feel like that’s what I’m doing.  I’m recognizing their opinion and I understand why they feel that way.  I feel like the only thing I can do is accept this and move on.  Raging against this will accomplish nothing.

I have the support I need to do this.  My husband, his family and my family are awesome.  I’ve rekindled some friendships from high school that have healed me more than those beautiful women will know.  It’s a wonderful thing to know you can pick up the phone or get on Facebook and have a conversation with someone who knows you down to your soul and only wants what is best for you.  I have amazing examples to follow.  My Dad, my Step-Father (who I also call Dad), my Mother, both my Mothers-in-Law and my Father-in-Law have all worked with pain.  They haven’t given up and I can’t either.  Every day I wake up with one priority: To be a good example to my kids.  Every time I whine about my problems and find excuses not to do something, I’m telling them it’s okay to make excuses just because something is difficult or because I hurt.  I can’t do that.  It is not the example I want to set for my kids.  No matter how bad my pain or fatigue I want them to see me pushing myself, going outside my comfort zone and rolling with the punches of life.  If I am too tired or in too much pain, I explain that, but always before I have a little honest conversation with myself about why I’m really telling them no.

I’d also like to make a special request.  If you are going to make any negative comments towards me or my attorney, I really would rather you keep that to yourself.  I have to stay positive for my husband and my children and I cannot even entertain thoughts of unfairness.  Sometimes life is unfair.  The judge feels that I could be a teller at a bank and if it takes trying to do just that and seeing what happens, I’ll gladly do that.  Since my diagnosis I have learned one very important thing.  You never know until you try.  That’s all I can do.  Try.  My husband would chime in with the quote from Yoda, “Do or do not.  There is no try.”  That certainly applies in this case.  I made him a painting of this quote and I read it every day.  No more excuses.  The pain and the fatigue are going to be there, I need to learn to deal with it.




I was cleaning my house and debating on whether I should post about how much better I’m doing.  I worry about how others will perceive my progress. Fibromyalgia and Chronic Fatigue Syndrome are not contests to see who has the most pain or is the most tired.  A lot of the Fibromyalgia support sites I follow on Facebook have too much if a “woe is me” attitude.  There was a time when I needed that and when I needed to feel like people understood what I was going through.  Every day, I move more towards a feeling that I don’t want Fibromyalgia and CFS to be the only thing people think about when they see me.  I don’t want to talk about it all the time, like I used to. I want to hear about you and your beautiful life and all the awesome things you are doing, despite this illness.  I want to talk about how much better I’m doing without hearing, “So, you’re better now?”  No.  I will never be cured.
I love all my fellow sufferers but, we need to remember something: Fibromyalgia and CFS are not terminal.  If you are suffering from other things, I totally understand how it’ll be different for you.  Everyone’s experience is different.  We shouldn’t judge others based on their experiences and we shouldn’t judge ourselves either.  For me, I have to remind myself daily that life is what I make it.  I have choices from the time I wake up until the time I go to bed.  I have to “suck it up” and do what I know I need to do.  When we are playing games and my kids ask me, “Am I winning?”, I always ask, “Are you having fun?”.  If their answer is yes, I tell them they are winning.  I guess the next time someone asks me how I’m doing, I’ll say I’m winning.

(Picture a super-satisfied smile on my face right now.  That’s how much I love me right now)


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It’s Early

6:00 am early. This is the second day in a row my brain has woken to birds chirping and the sun lightening the sky and been unable to shut off the blog post in my head. I might as well go with it.


I’m having trouble remembering what I was so fired up about. It had to do with mornings and staying positive and wanting to have a better quality of life. How about a pic of the baby birds while I think about it? They are really loud when they’re hungry, but otherwise, we don’t notice them.





It worked!  I remembered one of the things I wanted to post about.  It was going to be it’s own post, though.  I guess I’ll have to hope my brilliance comes back to me so I can impress you all some other time.

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I Really Miss Working

Really?  Yes.  Really.  I miss working so much.  I loved getting dressed up for work, feeling a sense of purpose every day, knowing I was supporting my family.  I miss my co-workers and I miss my customers.  When the reality set in, that I wouldn’t be going back to work anytime soon, I was in denial.  I had a hard time just driving by my old job, which is on the main street where I live.  Seeing people from work depressed me, even seeing them on Facebook.  I had to remove their posts from my news feed just so I wouldn’t get depressed.  The guy who cleans the bank where I used to work lives the next block over and drives by my house several times a day.  Every time he drove by, I was reminded of what I used to do and what I would never have again.

My brain has had a much easier time of admitting how much I miss working.  I have dreams that feel like they are real about work all the time.  My most recent one was pretty hilarious.  I was at my old desk at work and one of the loan officers needed me to close a loan for them.  We were lending money to Kanye West.  I am giggling as I type this.  Never, in a million years, will Kanye West ever walk into our little town, let alone, the little Ag bank that I used to work at.  Seriously, brain?  Kanye?  I did meet him and start to close the loan.  He was very polite in my dream.  Maybe that’s what woke me up.

That I can even talk about my little work issue is amazing.  I feel like I’ve grown so much in the past year.  I even looked at some former co-workers Facebook pages with only a little bit of melancholy.  I miss them so much.  I’m so glad for the time Fibromyalgia and Chronic Fatigue Syndrome has given me with my kids.  I used to wish I could stay home with them, but knew it would never happen because I HAD to work.  Funny how life kind of gives you what you need most.  I fought it, I over-thought it and I hated it.  It’s time to accept it and move on.


Great News!

My attorney just called and it turns out, I’m not disabled.  What a relief.  Guess I’ll just get up, go out and get a job.  No problem!

Ugh.  In all seriousness, I do not feel like fighting anymore.  My attorney wants me to read through the decision when I get it in the mail and then make an appointment to discuss my options.  From the little she read, the judge went with the doctor who examined me for 5 minutes for the State of Colorado.  He disregarded my doctors’ opinions and the opinion of the occupational expert that testified at my appeal.

I can’t let this bring me down.  I have to keep breathing, stop gritting my teeth and just let it go.  Can’t change it now, might as well move on.  I think I’ll blast some happy music and do something that makes me happy.


Music is My Favorite Medicine

No matter how I’m feeling, either physically or emotionally, music helps me get where I need to be more than anything else.  I’m sure I’d be in a lot more pain if I didn’t take my Naproxen and Baclofen.  I can’t sleep without a Baclofen and an Amitriptyline.  But the medicines I take aren’t always prescribed by the doctor.

Every night, I listen to Bedtime Beats: The Secret to Sleep after I take my nighttime meds at 9 pm.  They help me to chill out and focus on relaxation.  If I watch TV with my hubby, I usually have more trouble falling asleep, so I also limit that at night.

Every morning, I start my day sitting at my kitchen table (no bed laying or couch sitting when I’m trying to wake up), listening to American Authors, Young the Giant, The Ting Tings, New Politics, Paramore and OneRebuplic, just to name a few.  These bands all have songs that are very positive and encouraging.  They make me want to get up and get things done.  One of my favorites, that has really inspired me and become a mantra for me is Young the Giant’s, My Body.  The entire chorus is often sung at the top of my lungs:

My body tells me no 
But I won’t quit 
Cause I want more 
Cause I want more
My body tells me no 
But I won’t quit 
Cause I want more 
Cause I want more

I also love a song by Bleachers, I Wanna Get Better.  In my car or at my house, I sing the chorus and I believe it.  I do want to get better.  Every day I work on it and every day I make progress.

The entire American Authors album is awesome.  On Believer:

I’m just a believer
That things will get better
Some can take it or leave it
But I don’t wanna let it go

You guessed it.  I sing this at the top of my lungs too.  Don’t get me started on my family’s favorite, Best Day Of My Life.

I could go on and on about the music that puts me in the mood to kick some ass and take some names.  I also listen to Hip Hop, R&B, Rock, Folk and anything else that has a good beat and gets me out of my head.  Yesterday, there was some drama in my life and the song that snapped me out of it was Lily Allen’s, F*** You.  It’s a little bit naughty and if your offended by the f-bomb (the four letter word, not fibro, though, aren’t we all offended by fibro?), it may not be for you.  But when I’m angry, it helps to sing this at the top of my lungs and imagine that person standing in front of me.  I also really like Florence and the Machines’, Shake It Off.

Please share if you have any music that helps you get going.  I’m always looking for new songs to add to my “get off my butt” playlist.  I should also add that, while I like country music, it gets me all emotional, so I don’t generally listen to it.  Some Miranda Lambert, Carrie Underwood, Sugarland (their Incredible Machine album got me through some tough times), and The Band Perry is about all I can take.

Music is healing.  I cannot tell you the times a song has talked me down or lifted me up.  One of the most depressing things for me, at the beginning of my fibro, was not being able to shake my booty to the beat.  It devastated me.  Well, I’m very happy to say that I’m to the point where I can shake my booty again and often do.  It keeps me loose and makes me smile.  May you shake your booty like no one’s watching and sing like no one can hear you (even if your neighbors stare and all the dogs in the vicinity howl).

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