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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TMI/NSFW/Nof for the little ones

My hubby sent me the following e-mail last Friday:

I told you so…Winking smile

 I thought you would be interested in this: The Hidden Health Benefits of Sex (http://healthyliving.msn.com/health-wellness/women/sex/the-hidden-health-benefits-of-sex-3#scptmh)

Now, I am willing to try just about anything when it comes to feeling better.  Yoga.  Meditation.  Acupuncture.  Supplements.  Gluten-free.  Grounding.  I’ve tried all of these with varying results.  Being the open-minded person I am and due to a severe headache along with various other fibro-related aches, I decided to put “sexual-healing” to the test.  I first tried a muscle relaxer, a naproxen, a heating pad and a eucalyptus-spearmint Epsom salt bath.  When the combination of these did nothing to dull the ache in my head, I decided to give my hubby the “benefit” (wink, wink) of the doubt and let him attempt to sex me back to health.  Well guess what?  It didn’t work!  I think my headache was actually worse.  And if you read the article and noticed that it says the big O is important, trust me, I do not have that problem.

I have further evidence that “sexual-healing” is not that effective in the treatment of fibromyalgia from last night as well.  Last night was BOW-CHICKA-WOW-WOW epic and today I am a waste of space.  My neck and the tender-points at the base of my skull hurt so bad.  We are getting a storm in and that probably doesn’t help but seriously.  This is a perfect example of the mind-screw that fibromyalgia is.  Even when you are enjoying something, when you pay so heavily for your enjoyment, you start to dread the thing that you love the most.

Another example of this is laughter.  They say laughter is the best medicine and I love to laugh.  If you don’t believe me, go to my Facebook page (http://www.facebook.com/SueGomez79) and watch the video from Sunday (you probably have to friend request first).  I enjoyed the heck out of that dinner.  The food, the conversation and the laughter.  But after a couple hours, my feet hurt from my boots, my butt hurt from the chair, my face hurt from the chewing/laughing/talking/smiling combination, my neck hurt from the hour-long drive to the restaurant and I was ready to lay my head down on the table for a nap.  I remembered the last time we ate there and ordered accordingly because even though I love crab legs, my arms and hands hurt so bad from cracking the last time and I just didn’t want to deal with that.  We also had my husband’s Christmas party the night before and it was the same thing.  The person we sat with at dinner had me cracking up but then my face hurt so bad I had to massage it to keep my cheeks from cramping.  I wore high heel boots for the first time since my diagnosis.  On our way to the second part of the party at a bowling alley, we had to buy me comfy slippers because my feet, legs and hips were starting to cramp up.  A couple people thought I was asleep at the bowling alley because I was sitting there in the middle of the party meditating because I hurt so bad.  Then a well-meaning person came up behind me and started to rub my shoulders.  I was polite but I really just wanted to go home at that point.

The busy weekend left me spending yesterday recovering and not getting much done.  Today, I’m obviously not feeling much better and I’m pretty exhausted.  My holistic doctor gave me a new medication to try when I absolutely have to get something done but don’t have the energy.  It is called Nuvigil and I only took a quarter of a pill because I’m so sensitive to medication.  It helped me get to the school to get the kids but I still hurt so I’m not sure I’ll get much else done today.  I think I can probably speak for my hubby in saying that we still hold out hope that the benefits of sex will outweigh the pain caused.  Maybe me and the hubby are doing it wrong.  We’ve had a lot of practice but there’s always room for improvement.

 

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Impact of Repetitive Activity on Fibromyalgia Symptoms

Impact of Repetitive Activity on Fibromyalgia Symptoms.

Thanks to http://www.fmnetnews.com for this great article!

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PMS

I know that you are supposed to enjoy your time on this earth and be thankful for all you have, but can I just rant and wish for the future for a moment?  I cannot wait for menopause!  At least I think.  Please correct me if I’m wrong, but having fibromyalgia and chronic pain and fatigue has got to be easier without the monthly aggravation (additional pain, nausea, fatigue) of PMS, right?  Please, someone tell me that it gets better.  Right now, I would not be surprised if there were little humanoid, clawed beings trying to scratch their way out of my uterus.  My forehead feels like it’s the heaviest thing on my body and everywhere I look I see those shadowy images I get right before a migraine.  

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It’s a Lovely New Day

one-lovely-blog-award1

It is one o’clock in the afternoon, my blogging time.  I am in ready position.  Hands on the keyboard.  Support under my elbows.  Full of topics to blog about.  Where do I start?  I’ll mention the obvious.  I’m already in pain and I’ve barely typed anything.  It is time for me to eat lunch and take my medicine but I am going to ignore my alarm so I can get this out.

I was nominated by http://painfighter.wordpress.com for the “One Lovely Blog Award”.  Thank you so much for nominating me and for reading and commenting and all the support.  This blog and other bloggers are my support group, which every doctor I see and every book I read says it’s important for Fibro Fighters to have that.

I think that the rest of my post, in which I’m supposed to say seven things about myself, will be free-form and I’m sure I’ll say 7 things about me and that there is a good chance that half of those things will be TMI.

Just yesterday, I started writing in my journal again but am taking a different approach.  I’ve decided to concentrate on the following:

  • Make realistic goals and keep them.
  • From now on, the couch is your last resort.
  • Eat at the table for as long as you can.
  • You have to want to get better, even if what is better is something different than what you used to be.
  • There are no more excuses and no more wasted days.

I then made a separate list of my 5 realistic goals.  These are things that bring me happiness and will help keep me centered.  I will do these every day, whether I do anything else or not.

  1. You will shower every day.
  2. You will do dishes or laundry every day.
  3. You will write five positive things about yourself and your life every day.
  4. You will meditate or do yoga or practice some other relaxation technique every day.
  5. You will hug your kids and kiss your husband every day.

I then decided that I would reward myself with activities I enjoy for doing these basic things.  My neighbor’s daughter has been living with fibromyalgia for 25 years.  She told me not to focus on the pain.  The only way I can do that is to focus on things that I can effect outside of my body.  I’m not going to focus on the things that I can’t do but I am going to enjoy everything that I can.  Instead of being afraid of my body, I’m going to be conscious of what my body is telling me and move on.

I’m waiting to hear from the disability company.  I can’t do anything more to prove to them that I am unable to give the little time that I get during the day that is pain-free to a job.  It is not that I don’t want to work, it is that I cannot.  I am in constant energy-saver mode.  If I do too much, I pay for it, either with pain or with fatigue.

I am done focusing on the pain and the fatigue.  Yes I hurt.  Yes I’m tired.  But I’m alive.  I’m a mother to three beautiful children and a wife to a very sexy, very supportive, uber-awesome husband.  I have focused enough energy on looking back, wishing things were different and hurting for those things that I’ve lost.

Thunder is rumbling in the distance and maybe that’s why I have so many aches today but right now the sun is shining and I am looking ahead to lunch and then to picking my kids up from school and helping them with their homework.  Peace out (imagine two fist-bumps to the chest and then a peace sign)!

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Glutton for Gluten-Punishment

When I first went gluten-free I made a joke about not eating chocolate cake in front of me. Well, in the last week, chocolate cake has been under my nose twice and I couldn’t help myself. My three-year-old didn’t want the rest of her cake and I couldn’t let it go to waste. What kind of example would that be? At the same birthday party I also ate a mini turkey sandwich. It wasn’t my fault. There was a little umbrella stuck in each sandwich. They were too cute to resist! I arrived at the party looking six months pregnant and I left looking ready to pop. I should mention that I’m not pregnant, I just can’t get rid of this tummy! I’m not sure if the pain I felt afterwards was from eating the gluten or from driving the 20 minutes to the party and following my three-year-old around a splash-park that she refused to get splashed by. I’m still having bouts of pain even when I don’t have any gluten.

I finally finished preparing my appeal to the disability company, with my hubby’s help. I’ll let you know how that turns out.

I know that walking is supposed to be the most gentle exercise but I hurt so freaking bad after a two-block walk to the library. I didn’t know if I’d make it home I hurt so bad. Now I’m so exhausted that I feel like I’m going to fall asleep. Typing this, there is not a muscle in my legs or arms that isn’t aching.

I was recently given the advice to not think about the pain. Yeah. How am I supposed to do that exactly?

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What is Fibro-fog?

Fibro-fog is dropping a full laundry basket on your toe because you have no reaction time to pull your foot back, even though you looked down and thought about it. Fibro-fog is forgetting the hell you go through every time you do laundry, so you do the same thing, like picking up a full laundry basket or folding a whole load at once and then wondering why you have spasms in your neck and shoulders, like it doesn’t happen every time you do laundry.

I’ll have more on Fibro-fog later. I hurt too bad to type any more.

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Grumpy

I have to apologize to my husband and kids for my behavior this morning.  I was grumpy with a capital G!  I didn’t mean to be and I really tried to speak slowly so my children would understand the directions I was giving them and I really tried not to bite my hubby’s head off.  It’s not his fault (well, it sort of is) that our appointment this morning was at 11 am.  Way too early for me!  It’s not his fault that I hurt so bad or that I’m so tired (well, it sort of is, he wouldn’t let me sleep!).  It is not my kids fault that they have selective hearing and if they are looking at the TV or playing a game they have no hearing.  I was feeling weak, tired, hurting everywhere and was trying not to focus on that.  So, I’m sorry I yelled at my little angels and gave them dirty looks when they weren’t opening the van doors fast enough while I tried not to drop the littlest of my angels.  Even typing this is too much.  Thankfully the appointment was cancelled before I had to make the drive into town.  I was making it up to my kids by letting them play XBOX.  They started to fight, I made them turn off the TV and I’m pretty sure I hear the beginnings of a water fight in the bathroom.

If I needed any proof that working isn’t an option I got it from my frenzy of research and writing and phone calls I did to combat my disability company’s actions.  I hurt so bad yesterday, then we got a rainstorm the night before last and last night.  Pain times a thousand.  I just moved my heating pad from one area to another.  Right now I have pain in my legs, ankles and in my hands.  I had really bad blurry vision yesterday.  So bad that it looked like my little girl had two sets of eyes.  My hubby had to take off of work to drive me to acupuncture and I feel like it’s coming on again.  Anyone ever had that happen?  My husbands Aunt has Fibro and when she started having blurry vision, she had to go off of Lyrica.  There’s lots of clouds, so that might explain part of why I hurt so bad.  I don’t even have to check the forecast any more.  Maybe I could get a job as a carny.  I’ll guess the weather from the inside of a padded room with no windows.  That sounds more like the funny farm.  I’m blathering now.  Have a great day!

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I Can Do Eet!!!

Do to unforeseen scheduling conflicts, I had to drive myself to my appointment with my pain specialist today.  This is a ginormous deal for me.  The trip takes about 45 minutes and includes driving on the interstate.  This is the farthest I’ve driven and the first time I’ve driven on the interstate in over a year.  I kept telling myself out loud, “you can do this” over and over when I felt myself tensing up or hyperventilating.  At the top of my lungs, I sang along to “Jack and Diane” by John Mellencamp, “Dream On” by Aerosmith, “Hella Good” by No Doubt and a couple other songs that I cannot, for the life of me, remember.  Despite the mini-concert, I arrived safely and a half an hour early for my appointment.  This was a good thing, as they do a UA (urine analysis) at every appointment.  Unfortunately, even though they got me right back for the UA, I forgot to tell my doctor’s front desk that I was done peeing in the cup and didn’t remember until a half an hour past my appointment time.  Do they not realize they are dealing with a fibronaut?  They’re lucky I remembered what I was supposed to do with that little plastic cup after I read the directions that are taped on the wall next to the toilet!  By the time I was finally called in to see the doctor I was exhausted and not looking forward to the drive home.  The pain in my shoulder was screaming at me that it was time for my muscle relaxer but I knew if I took it then, I’d be too tired for the drive home.  While my “driver” did arrive to “help” with my nearly-three-year-old, she cries every time he tells her anything, she won’t let him take her to the bathroom and she won’t stay in the waiting room with him.  I still had to drive us home, but at least (since when is atleast not a word Google Chrome?) there was someone following who could honk wildly if I drifted or swerved or something.  My nearly-three-year-old also got an impromptu lesson in peeing in a cup when she refused to stay in the waiting room with my “helper”.  That wasn’t an awkward experience at all (did the sarcasm come through?).  I realized on the way home that I didn’t have to take the interstate that morning after all.  With the stress of the trip to the doctor and the actual doctor visit over, I found a route that avoided the interstate completely.  Thanks to fibro-brain, I am unable to make last-minute decisions.  Thanks to our finances, I don’t have GPS or a smart phone.  Which means, if I don’t have time to get on my laptop before I leave and I have to drive on the fly, I take the first route that pops in my brain.  We made it home again safely and after picking up my other two from school, saying I hurt really, really badly is an understatement.  My pain specialist has allowed me to take 800 mgs of Ibuprofen three times a day if needed and I need it now.  My fingers, wrists, elbows, shoulders, knees, feet, toes and hips are killing me and I want a nap.  I’m under my heating blanket even though its’s 70 degrees outside.  I’m ending this now because I can’t type anymore.  Fibro Fighters Unite!

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Day 6 of No Narcotics

I can’t really say whether my pain is worse or not.  Still having the big D, thanks either to withdrawals or antibiotics I’m on for a skin infection.  Yesterday was rough.  It was Easter and we invited some family over for an Easter egg hunt so that meant cleaning.  I washed the girls dresses (all the orange frosting from the cake fight came out) and sorted laundry, although I never got around to starting another load.  I swept and mopped the kitchen floor.  As I’ve mentioned before, my friends bought me a MINT automatic floor cleaner, but I have to pre-sweep and pre-mop before using it because of how bad my kitchen floor gets.  I’m not sure that my mommy dog Leia, who is in the kitchen with her three, two-week-old puppies, would appreciate it either.  I also vacuumed my daughters room, around the litter box and my living room floor.  I helped my hubby hide the Easter eggs and was the official photographer.

All that activity and the added stress of company and kids caused me to have a less than fun night.   The trips up and down the stairs had my ankles, knees and hips aching and spasming (Google says thats not a word but I use it all the time so Google can suck it).  The over-use of my right arm had painful spasms shooting from my shoulder up to my neck.  At first I tried rubbing vaporizing rub on my shoulder and the surrounding area.  That usually works, but that was when I was on pain medication.  Realizing that, I tried a couple ibuprofen.  Nothing.  Massage, heat, ice and repeat.  Nothing.  F-bombing did not help either.  The day before may have added to the pain.  We went to my daughter’s volleyball game and then to Denver for my Step-Dad’s 80th birthday party.  I was nauseated from the pain and fatigue about half-way through.  I am just now recalling my Step-Sister’s very steep stairs and steep driveway with several taller-than-normal steps.  That explains the knee and hip pain early on yesterday, before I even did anything.

Every day is a new day.  Take it one day at a time.  Kind of hard to do, when you have to think back on what you did the day before or the day before that to figure out why you are hurting so bad now.  My left arm is beginning to ache now, going up into my neck, probably from typing this, so I’m going to go take my muscle relaxer just as soon as I post this.  Then I guess I should shower and finally start that laundry from yesterday.  Laters Baby (“Fifty Shades of Gray”).

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