Fibronaut At Home

Just One More Thing

I’ve been fighting a stupid cold for what I think is a month, but I’m not sure, ’cause my memory sucks.  Now my son is sick and I have to take him to the doctor today.  The sky is overcast and everything hurts.  I’m tired.  I’m whiny.  Somebody bitch-slap me via internet, STAT!

I’ve been trying to not let the weather determine my attitude about how my days going to go.  Does that make sense?  I always check the weather, and I get cranky when I see temperatures fluctuating drastically between days.  Ten° F isn’t bad.  Twenty or more °F  between days, especially when it goes 60°F to 40°F to 60°F again, and I get perturbed.  When we went to Vegas this summer, it was over 100°F every day, but it was constant, no fluctuation, dry heat and I had some of my best days this year there.

Laundry is going, which means I’m recovering from all the separating I did yesterday.  My hubby tried to help me last night and probably wanted to strangle me when I hollered down the stairs that he needed to completely change the settings he had on the dryer and the washer.  Seriously, I was half asleep, but I could hear him “helping” and I just knew he was going to shrink everything.  And he would have.  He had a load of delicates on “heavy duty” in the dryer, which means high heat and forever long, and another load of delicates in the washer on “normal”, which means warm heat and as rough as a mechanical bull.

Dishes are piled up.  We have zero clean forks.  All the back up plastic forks are used as well.  I have zero clean large coffee cups and zero clean travel mugs.  We are almost out of clean bowls.  My hubby cooked dinner last night, so I have that horror show to clean up as well.  If I don’t get a load of dishes run today, we will be eating cereal out of cups, and everything will be finger food by default.  I’m considering trying the cycle where I don’t have to rinse anything before I put it in the dishwasher.  That’s not how I do things though, so it’ll be interesting if I can even load the dishwasher without rinsing.

Because have all this on my plate, I am on trial number three of Nuvigil.  My doctor says that some people love it.  The first time I took it (a quarter of a pill, as my doctor recommended) I had all the energy in the world, but my pain was off the charts.  The second time I took it, I waited too long to decide that I wasn’t coming out of my slump and needed it, took it in the afternoon (Stupida!) and couldn’t fall asleep that night.  Today, I took it at 9 am, so hopefully it helps me get all this crap done.  I am expecting my pain to be off the charts again, though.  I already know what happens when I have a good day and don’t pace myself.  An artificially manufactured good day?  I can’t afford to pace myself and I’ll probably end up doing way too much and needing three days just to recover.

 

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Dear Winter

Dear Winter,

When it was hot in the summer and I was sweating profusely, I pined for you.  I couldn’t wait for you to render me useless beneath heating pads and heated blankets.  I longed for luxurious soaks in Epsom salts baths.  My only desire was to alleviate my pain without sweating like cold drink on a hot day.  No more sweaty under boobs, cracks or crevices of any kind.  No more painful blasts of air-conditioning.

Well, I guess I’m just not ready to commit.  It has become quite clear, that I don’t know what I want or need.  This past Saturday was the first day of Fall.  You know Fall right?  Lower temperatures, kills off all things green?  Sometimes, it rains.  Sometimes, it snows.  Sometimes, it just blows.  

It started yesterday afternoon.  I had been feeling my normal, ho-hum self all day.  Then came the Brick Wall of Fall.  I felt like my battery had suddenly been drained.  And the pain!  Everything hurt.  Face, neck, head, arms, shoulders, hands, elbows, ribs, gut, hips, knees, thighs, and feet.  Pain, pain, everywhere and not a thing to help.  I have one heating pad, since the fire fiasco.  I was already too exhausted to take a bath.  I listened to my “Bedtime Beats: The Secret to Sleep” CD and was able to relax enough to go to bed.

The remainder of my night went like this.  Wake up from dead sleep to use the facilities.  Go back to sleep.  Wake up from dead sleep, in absolute terror, because it sounds like my son is crying and my hubby is yelling like they are being attacked.  Resist the urge to kill hubby, when I realize he is watching “The Walking Dead” and that accounts for the sounds that woke me up from a sound sleep.  Wake up to daughter crying.  Wake up to daughter coughing and Daddy trying to help but Daddy has work, so here I go again.  Sit up with daughter until she falls asleep.  Surf Facebook, because now I’m wide awake and the more my daughter snores and sleeps blissfully, the madder I get that I can’t sleep.  Sleep the rest of the night, eventually.

I feel I’ve digressed, slightly, from my topic.  Hold on a second.  I need to go to the top of this letter and remember why I was writing you a letter in the first place.  Oh, yes.  I remember now.  I was trying to let you down easy.  Since I hurt too bad to sugar coat it anymore, I’ll just put it this way.  Winter, you suck.  I’m not ready to hurt every minute of every day.  I’m not ready to be so tired I can barely walk, let alone do the five hundred other things being a Mom requires.  Also, I was just thinking that maybe I should try selling some of the stuff I sew.  Thanks for taking that dream away from me as well.  I can barely get my kids to and from school and their sport’s practices like this.  My poor Hubby is so grouchy from his work situation, that I am the only one getting anything done around here.

Not to be harsh, but nobody likes you.  Maybe, when it snows and the ground is covered in white and glistens in the sun, but that is the only time.  And, maybe, when you leave the trees all frosted in the morning.  Other than those two instances, you could go away and I wouldn’t miss you at all.  I guess what I’m really trying to say is, I would rather be sweaty, in pain and fatigued from doing more than normal, than to be in pain, fatigued and pretty useless for no good reason at all.

Sincerely,

Fibronaut at Home

PS.  I just realized, this morning, that we would soon have a Daylight Savings Time event.  Bite me, Fall!

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Dear Summer

Dear Summer,

I waited all winter for you.  Through the cold and the snow, I longed for your warm embrace.  I dreamed of the day when you would finally hold me in your arms again.  I just knew that when you came, my pain would lessen, and I would no longer be a shadow of my former self.  With you, I would be better, stronger and happier.  With you, I could do anything.

Now you’re here and I wonder what the funk-n-wagnall’s I was thinking!  Almost every afternoon, your moody ass brings a chance for rain.  Every drop of the barometer is like a ton of bricks, weighing me down, making me sluggish and amplifying the pain.  By the time I’m up and moving in the afternoon, the storms start rolling in and by then, I’m in too much pain to accomplish much.  

In the winter, I could take a hot bath when the pain became too much.  With you, every storm brings lightning with the pain, leaving me without the hot bath relief.  So I use my heating pads, which makes me sweat like a pig.  Attractive, isn’t it?  Every muscle on my body hurts and so I rotate my two heating pads from one painful spot to the next.

When the sun is shining and I decide to relax in its warmth, whatever shorts I’m wearing feel like a million tiny little bees are stinging my skin.  If it is extremely hot and I go somewhere to escape the heat in air conditioning, the air conditioning makes me hurt.

I guess what I’m trying to say is, I think it’s time we go our separate ways.  I know that sounds impossible, seeing as how I live in Colorado and you are, well, everywhere.  There is just no compromise to be had here.  My body needs some consistency in the weather, not all these mercurial weather patterns.  You know I love your beautiful flowers, longer days, singing birds and bountiful gardens, but I need more than just a pretty face.

Delusionally yours,

Fibronaut at Home

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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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Snow, Fo’ Sho’.

 

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We awoke to find a couple inches of snow. With my weather-prediction body, I should have been a meteorologist. It is supposed to continue snowing through Wednesday.

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In technology news, yesterday, I dropped my laptop. The screen is fubar and I’m imposing a technology ban on myself. I will no longer be allowed to use any kind of mobile device while I’m mobile. Walking and doing anything else is obviously not for me. We are currently using my daughter’s Kindle Fire. The really sad part is that this is not the first time I’ve destroyed a laptop. August 2011, I spilled an entire glass of Orange juice in the previous laptop. What bothers me the most is that I was trying to connect the printer/scanner to the laptop when I dropped the laptop. That’s one way to solve the problem, I guess.

In other fubar news, we’re staying with family because, last night, while draining the bath tub, the water went into the kids’ room. We just replaced carpet pad and dried out the carpet. I’m pretty sure I shared how I tried to clean the washing machine filter and didn’t get the cap back on all the way. This time is so much worse because the water doesn’t smell like the girls’ bath water or washing machine water. It smells like the sewer lift station. We are so fortunate that we have family nearby who are willing to let us stay with them. I could really use some good news. I have a doctor’s appointment tomorrow. I have to pay for him to fill out my Social Security disability paperwork. My hubby is driving me, but, my doctor is in Boulder and they are expecting more snow than us.

April has been a tough month.  I’m ready for May.  I’ll turn 34 and hopefully we’ll have our house figured out and the rest figured out.

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The Nice Weather Curse

Yesterday was the first day in the last couple weeks where we had nice weather.  I was up and about earlier than normal, feeling better than I have in months.  I think you know what’s coming.  I’m so behind on everything because we’ve had a couple snow storms come through and storms always wipe me out.  I started with dishes and loading the dishwasher.  Then I washed pans.  I swept the kitchen floor, moved the chairs out to the deck and ran the Mint a couple times so I wouldn’t have to mop.  Last week someone spilled blueberries in the crisper drawer so I washed that too.  I even emptied the dishwasher, which I usually save for the kids or for the next day.   By the afternoon I could barely move my arms.  I had to turn down the radio while driving so I could concentrate enough to stay on the road.  I could barely hold the wheel and my legs were having trouble pressing the gas and brake pedals.  Every single muscle hurt.  My hubby is sick and I had to go to the store for him.  I was in so much pain and walking so slow and I know the misery showed on my face.  I’m sure the checker thought the medicine was for me.  I took a hot bath and even that didn’t help.  I had two heating pads rotating from my feet to my knees to my hips to my hands to my arms to my shoulders to my back.  

Today I am no better.  I hurt my thumb twisting the bag of bread this morning.  I slept in but feel like I didn’t sleep at all.  I’m stiff and I hurt.  I have 4 hours before I have to pick up the kids but we need toilet paper and my hubby is still sick so that leaves me to go to the store.  It might be time to train the 11-year-old on running into the store for me.  I’ve only been awake two hours.  Is it too early to take a nap?

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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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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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Freaking out

In the mail today was a letter from my Long-Term Disability Company stating that in order for me to continue receiving benefits, they needed a statement from a doctor stating what I can and cannot do.  I’m freaking out for no reason because I went to my Primary Care Physician last week to resolve this issue.  So I shouldn’t be freaking out.  My doctor probably faxed the form as the company was mailing me this letter.  But I cannot help it.  Until this issue is resolved, my stomach is going to be one giant knot.  Combined with the wet weather coming, this added stress is just going to make me hurt more.  Stupid neck spasms are already starting.

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