Fibronaut At Home

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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Gluten Intolerance

I haven’t actually been diagnosed, except by my very wonderful acupuncturist, but having been off gluten for a month, I can report that I do feel much better.  If I needed any confirmation, I have it today.  We had dinner at Red Lobster last night and having been shut-down on a gluten-free menu so many times before, I didn’t even ask for it.  I had the maple glazed chicken with wild rice pilaf and broccoli.  This morning, I woke up hurting much worse than usual.  I called Red Lobster, had it confirmed that they do use wheat flour in the glaze but that they have a gluten-free menu that you can ask for.  So, if you’re thinking of going gluten-free, be sure to ask, even if the majority of people look at you like you’re speaking another language.

In the meds front, I’m trying to get off of the suboxone that I’ve been taking to help with the withdrawals and pain associated with addiction to opiates.  Not that I’m an addict.  I haven’t had one craving for my old pain pills, which didn’t help my pain at all.  Thanks to the neurologist that I used to see, as I think I’ve mentioned before, I was on narcotics for no good reason.  He was a jerk, who didn’t believe I was sick, so I’m glad I’m not seeing him anymore.  When I went to my new pain doctor, he explained that someone with fibromyalgia should never be put on narcotics.

My disability company called me yesterday to inform me that they would no longer be paying my claim.  No doctor filled out the work restrictions and there isn’t sufficient evidence to support my claim of fibromyalgia.  First of all, I didn’t diagnose myself, the a fore mentioned douche-bag, I mean, neurologist said that’s what I had.  Second of all, I called my current doctor, I’ll call him Dr. Wonderful, because the combo of him and his nursing staff are the bomb, and they never received the fax requesting work restrictions.  The disability company goes by the national norm for my job, which they consider a sedentary position and they think I can do that.  They don’t look at my specific employer and what they expect of me, which was to do the job of three or four people.  They look at what a loan processor is, probably at a big company, where everyone sits in their cubicle all day.  That was nowhere near what was expected of me, not to mention that doing the job of three people gives you the stress load of three people.

They also called me on a Friday afternoon, to tell me that they’d be mailing me a letter and I could see it then.  I was seeing red at this point, but did call back to ask them to fax it to me.  Reading the letter made me even more mad, especially the comments that the douche-bag, I mean neurologist, made about me walking with my young child.  Not carrying her.  Holding her hand and walking with her.  The ass also said that I always seemed better after the appointments and never seemed fatigued.  Could it be that I was more warmed up and able to move better after having been up and around?  How could he tell me that I needed to exercise and walking was a good exercise and then damn me by saying I was walking better at the end of the appointment?  I do have fatigue!  Every day!  Is he with me 24/7 to see that?  I guess I should’ve cancelled my appointments on my good days and only gone in on my horrible ones!

Lastly, I’m dealing with the shock of the mass-shooting at a theater that I used to go to, in my home-town of Aurora, Colorado.  It is 10 minutes from my Mom’s house and 2 minutes from where I used to work in high school.  The guy lived 5 minutes from my Mom’s house.  I just can’t believe that this would happen.  He killed kids.  My father-in-law wants to take my kids to see Batman today and I want them to go and have fun, but I’m scared.  What if there are copy-cats?  I’ll go see Ice Age with my three-year-old while my hubby and father-in-law take the older kids to Batman, but I’ll be worrying about them the entire time.  I really hope that people don’t judge Aurora or Colorado badly, from this one incident.  I have to point out that this person was from California and was only in Colorado going to college.  I would like anyone reading this to say a prayer for the victims and their families.  Hug your kiddos and loved ones a little tighter, even if it hurts.

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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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Note to Self

Note to self:  When you tell the acupuncturist that you felt funny feelings in your tummy during the treatment and she tells you that she placed the majority of the needles so they would help with your bowels, that means that you will probably have no control over when you fart for the next couple days.  She said that everything was in balance except for my large intestine.  You think?  Walking out to meet her at her kitchen table, I farted.  Loudly.  I thought it was maybe a fluke, but no.  I’ve been farting at the worst times all weekend!  Walking through the restaurant at my birthday dinner.  Making Emma a peanut butter and jelly sandwich.  She yelled “You farted!” and giggled because she was sadly at booty level.  I’m glad everything appears to be flowing better and I usually enjoy a good fart joke, but come on!  I haven’t crop dusted like this since I was pregnant.  “Keep walking!  Don’t ask questions just keep walking!”  Those preggo farts were the silent but deadly variety.  The ones that are slipping free now are loud and proud.  I think I’ll just go with it and own up to my flatulence.  Instead of “Excuse me”, I’ll say “You can thank my acupuncturist for that” or “That’s just my large intestine attempting to balance itself”.  Feel free to borrow those if you are unfortunate enough to have any public performances.  Until next time Fibro-fighters!

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Hello Again!

Hello again!  I feel like so much has happened and I don’t even know where to begin.  I’ve been to the acupuncturist three times now.  The first two times were to release all the negative toxins I have in my system.  This was a very exhausting process.  I have been so fatigued that I had only a couple days in the last two weeks where I had bursts of energy that allowed me to clean the kitchen and do laundry.  I squeezed in a couple walks around the block, but mostly was saving myself for picking my kids up from school.  This last visit to the acupuncturist was to try to balance all my stuff out (she said it differently, but you get the gist?).  Up until this point, I was kind of iffy on whether I thought she was actually helping me at all.  But this time, I felt like what she was doing was actually doing something to me.  I felt feelings in my tummy as I lay there and felt like I could breathe more fully than ever.  She felt like all my whatevers were in balance except for my large intestine and she feels that once we get that balanced, I should have less spasms in the rest of my body.  I’ve been given an herbal supplement Jia Wei Xiao Yao Wan to take and while I’m not looking for a miracle, I am cautiously optimistic.  I had to use the spelling hint to even spell optimistic, which tells you what a pessimist I normally am.  I won’t go any further into the details of how the acupuncturist actually puts the needles in and where or how long they are, just in case you are like my hubby and get queasy thinking about it.  Think about the most sensitive areas on your body.  I’ve probably had a needle there.  I’ve reached my current limit for typing (look at me, pacing myself).  Here’s to a more balanced large intestine for us all.

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Every Party Has a Pooper

My favorite quote from my Mom is “Every party has a pooper, that’s why we invited you”.  I always say it to my kids when they are pouting about something but this last week, I’ve been the party-pooper.  It started on Friday, when I lost my key-ring with my house key and post office box key.  I always check the mail on my way to pick up the kids from school.  I swore I put the key-ring back in my purse, but I couldn’t find it.  I assumed I had dropped it on the street while my little almost-three-year-old angel was poking me with a stick when I was putting her in her car seat but it wasn’t anywhere and hadn’t been turned in anywhere.  After hanging with my kids at the library where the little angel ran through the library for the entire half hour we were there and then hanging at the only park in town with the local wild life, I had had enough!  I was exhausted (as I am every afternoon) and I was cranky and I hurt.  I took the kids home, cut a screen and shoved my eight-year-old through the window.  I just couldn’t take it anymore and I snapped.  I was a damsel in distress with no prince charming in sight (or that’s what I told myself anyway).

My party-pooper weekend continued at my Mom’s Miche purse party.  I sat all propped up on the couch, with my feet in everybody’s face and pouted.  The poor sales rep and my Sister’s friend tried to make conversation with me, but I couldn’t even do that.  I was so tired from the hour-and-a-half drive that it was all I could do not to close my eyes and fall asleep.  I love purses, so why did I feel like I wanted to cry?  I won a prize and I couldn’t even get excited about that.  After about an hour, I ended up in the spare room watching HGTV and then movies with my kids.  That part was great.  It wasn’t until we were on our way home and I was talking to my hubby that it really hit me.  The sales rep had mentioned that Northern Colorado reminded her of Germany with the way the country is so open with little towns in between all the space.  I just kind of nodded at her and didn’t even offer up that I had been to Germany.  When I told my husband this, he nodded and said “you have no rapid reaction”.  I can’t even make conversation anymore because my reaction time to every thing is so slow.  The one good thing, was my sweet Mom bought me a purse (which is very cute and stylish and I love it) and as I was cleaning out my old purse, I realized that the pocket with my keys in it was completely empty!  When I jiggled it I could hear keys though.  I had a hole in my purse pocket and that is where my keys had gone!  All that drama thanks to a hole in my purse pocket.

It is 1:30 in the afternoon on Sunday of my party-pooper weekend and I’m sitting here, fatigued and in pain.  I’m also nauseated and having cramping because my lovely monthly-visitor stopped by.  I need a hug, but not to hard, because that’ll hurt too.  I’ve started doing a pilates DVD called “Pilates for Inflexible People” which I really like but I’m pretty sure that the 25-minute session I did on Friday was too much so I think I’ll skip today’s session.  I have laundry to do and I feel guilty because the rest of my family is outside working on our yard and I’m supposed to be cleaning house, but I’m still sitting here because my legs feel like they want to cede from my body.  I need a new body please?  My spasms have been slowly getting worse.  I did dream last night though and I can’t remember the last time I’ve done that.  Am I rambling again?  Oh!  Before I go, I have acupuncture on Tuesday and I’ll let you know how that goes.

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