Tag Archives: pain

RA Flare

I don’t usually post my poetry here, mostly because somehow in my brain the poetry isn’t related to the rest of me…

It is National Poetry Writing Month (NaPoWriMo) for poetry month (April)

I don’t usually struggle with poetry writing.  Usually it frees my mind and my heart.  This morning, not so much… today I struggle.  Today, the poem seems to be a good cross post…

 

RA Flare

Oh the full moon
this morning with the clouds
has a beautiful face

Where is the prednisone
why in the hell
did they put a childproof lid
on my freaking prednisone

Oh the coffee
smells heavenly
the creamy goodness is incredible

well hell
Broke another mug
shit I should have known it was too heavy
I guess it’s a plastic cup
kind of day

Oh thank you Kitty love
I love the way
your purrs make me smile

No don’t
not there
oh please
no no no
Sorry I scared you…
Didn’t mean to scream

Oh the peace of the morning
Sitting in the peaceful fog
windchimes sing

What, the oxy has childproof too
and even the dog’s tramadol
Someone get this knife
out of my shoulder
or get me a hammer
too much to do
got to get through

Attitude determines altitude
I can do this
I have to do this
I have to do this
I won’t puke
Find the center breathe
I think I can
I think I can

sigh

 

 

Author: April Wells
Updated April 7, 2015

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Quiet Sunday Morning… T minus 33 hours

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It’s Sunday morning.  Valentines Day dinner was spent in the cafeteria of the hospital where my little girl is spending some time.  Corn Chowder and diet ginger ale.  Festive.  The hospital doesn’t have anything in the cafeteria but fruit juice that isn’t diet.  Fortunately, the gift shop has regular pop and it’s only $1.70.  It gets warm in the locker, but by end of visiting hours, the gift shop is closed and there is NOTHING around the hospital where you can buy food or gas or pop… or coffee.

Yesterday, the drive there was incredibly snowy.  The Ohio turnpike was closed.  There were wrecks everywhere.  We drove through very nearly white-out conditions.  I’m glad we went.  We brought books that she wanted to read and work through, and clean clothes.  We were very nearly the only visitors there.

Today it is less snowy, less windy, but way way colder.  The trip will be less scary, I think.  And now we know where to park.

Today marks the official end of my week off.  I’m not entirely sure where it went.  i got a good bit accomplished, but I have so much more I wanted to get done around the house.  I will have to make a more concerted effort at doing it in smaller bites rather than trying to tackle everything at once.  I do know that I OVER did it several times and my body protested loudly.

Nine weeks (almost ten) is too long to go between Orencia infusions.

Cold doesn’t seem to bother me nearly as much as heat and humidity did.

Stress wreaks havoc on my body.

Pain makes me extremely bitchy.

Stress wreaks havoc on my body… (it was worth repeating).

One cup of Sheetz mocha and two cups of regular coffee (one chocolate creamer, one regular half and half) all mixed together make a wonderful way to wake up on Sunday morning.

The Artist’s Way by Julia Cameron is an incredibly good book that Squirrel Girl and I are both working our way through.  Me, through the electronic version, her through the paperback version we bought her yesterday.  I need to focus on my dreams as well as what puts food on the table and trying to be the duct tape that keeps everyone together.  The latter is far more exhausting than any of the former put together.

My knuckles scream… all of them… everywhere.  My ankles… my back… breathing aches my lungs (who knew that aches could be a verb).

I stopped my prednisone almost a week ago… just like the doctor said.  I’m living on naproxen and sheer grit.  I have to make it thirty-three more hours.  in thirty-three more hours, I get my infusion. I don’t care how sick I feel, I will not admit to anything other than the pain to my Rheumy’s PA.  I will get my infusion tomorrow… and afterwards, I will go to visit my squirrel again.

Listening to audio books chases the way too quiet away.  The boys sleep late.  The dog hunts the missing squirrel girl and lays at my feet.  I’ve been posting on my facebook vanity page.  I wonder if I can fix where these post…

It’s time to face the day…

 

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Morning in week 6

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So, here I am… it’s quiet and it’s dark and inside I’m screaming.  I’m tired and I hurt. This morning I caved and decided to take napproxin.  I have been gritting my teeth for days and I’m getting to where … Continue reading

RA Reminds us that it’s there

I’m sitting looking out over the snow in my yard.  There is a woodpecker munching on my suet feeder.  There are chickadees and titmouses (titmice?) grabbing some of the sunflower seeds from the clear plastic feeder that is stuck to my window.  The squirrels are, apparently, huddled in their nests somewhere because they really haven’t been making much of an appearance this morning, yet.  It’s really a pretty morning.

I’ve been fighting hard to get completely over the flu from December when… WHAM… Bronchitis from January derails any hope of my January infusion being on time, if happening at all.  The antibiotics aren’t really helping an awful lot.  My infusion is a week late now… my MTX has been put off for at least last week and this week and probably next week.

This morning, the stress of 70 hour weeks and forgetting to go pee, let alone eat and putting sleep off in the interest of “Git ‘er done” has all contributed, this morning, to my fingers and wrists screaming about whatever has been going on in my body.

Stress is really kicking my behind.

I try not to.  Honestly I do.  I try meditation.  I try not bath.  I try walking.  I  put bird feed into the big giant bird feeder out front, and I kind of melted down in the kitchen on the floor because I could not make my hands get the roof back on the bird feeder.

Stress is RA’s evil insidious little friend… and just when you think it’s safe to take a breath, something happens and your body rebels.  Stopping the drugs that make your immune system dumbed down so your body can heal from the sick just pisses off the rest of the immune system and WHAM… it comes screaming back to remind you that it is SO there.

Prednisone… I’m turning to you again… not a huge dose, but one that I really really didn’t want to have to start taking.

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The Value in Nothing

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It’s late again (for me).  Later than it should be.  Later than it could be.  And this morning I just don’t care.  I am sitting on the front porch.  My deer friend Eloise (I’ve named her Eloise… the one that … Continue reading

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Thank Goodness it’s Only My Hands

Up and trying to get some writing done.  Trying to finish my arm warmers.  Trying to stay psyched for the race.  I sit here and nurse my coffee, gulp my water and thank goodness that, for this morning at least, … Continue reading

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Because It Makes A Difference

So, I’m sitting here having a text message conversation with someone who I used to work with. She is 4 months down the “just diagnosed” trail. Prednisone for 4 months, MTX for 4 months. She just switched to my Rheumy … Continue reading

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I can’t do this anymore

Have you ever had one of those days (hours, weeks, whatever) when everything seems (to you, at least) to come crashing down and you don’t know what to do and you just feel like you can’t do this anymore?  You … Continue reading

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Rain… YAY… Oy Vei

Woke up this morning to the wonderful music of rain on the side of the house.  It had been so long (months) since we had any really appreciable rain and we have needed it so desperately.  We currently are looking … Continue reading

RA Pain

I’ve been working on pulling together my first couple of Videos for WEGO Health TV on RA and I posed the question to a group of online friends (partly to get the answers… partly to generate a lively discussion about what RA pain is like).

I was partly surprised at the answers… and partly not so much.  The physical description was what I thought I was after initially, and I got that too.  Now, I’m not so sure that is actually the best way to attack it.  I think it matters even more to remember that all of the pain in RA isn’t necessarily the pain in our joints or the utter exhaustion that we feel.  The pain itself is only the beginning… and in a lot of cases not the worst.  The worst of the pain in what happens in your head and in your heart.

Think about the things that you treasure most in your life.  Not the money stuff, the stuff that really matters.  Now, think about what if it hurt to do them.

What if it hurt to hold your 5 year old child’s hand on the first day of school?

What if you couldn’t get out of bed to watch your baby graduate from high school because you were in so much pain.

Holding your first grandchild

Baby sitting your neices and nephews (maybe you can’t lift their tiny body because of the pain and fatigue and weakness… maybe you are scared to death that your joints will give way and you might drop them)

You wake up one morning and your kids are depending on you to get them to school or to camp or to a sporting event (maybe counting on you being there to watch them for the day) and you can’t get out of the bed because your body refuses to listen to what you are telling it to do (muscle memory works in reverse, too, sometimes your body just get pissed off at you and won’t do what it knows will hurt) and your kids are late for the imporant events, events you never do get to attend.

You love to take pictues of all of the events in your family’s lives, and you can’t hold the camera long enough to take the pictures any more, or steady enough to.

You write… communicate with friends or family, or write for disbursing information and pleasure (poetry, stories, journals) and you can’t type for long periods of time (if at all) any more and holding a pen is difficult on a good day.

Pealing an apple with a paring knife

Knitting

Crocheting (my mom remembers a great aunt crocheting with thread when she had RA, her hands were so knotted and her fingers so twisted that she had to use a pillow to help hold her thread and her projects and she fought the pain to be able to make the stitches)

Picking flowers… gardening… cutting the grass…

You are too exhausted to go to family functions (holidays, birtdays, celbrations)

You can’t walk to the mail box most days because your toes and ankles and knees and hips hurt too bad.  You fight your body after half a day at an ammusement park because your feel hurt so bad and are swelled to such an extent that they won’t carry you from one bench to the next or from the parking lot to the hotel room.

You see the hurt look in someones eyes because you instinctively (not deliberately) flinch when they try to hug you or shake your hand or touch you.

You cringe and fight back tears when you see that the guy is cleaning the revolving door and you know you are going to have to try to pull open the regular door with your hands.

You avoid going to the zoo, or on a field trip, or a concert because you can’t get a “good” seat or you don’t know what steps you might have to walk up, or if there will be a place to sit down to rest (or time to sit down to rest) or what the bathrooms will be like (autoimmune disease means that you have to think about what you are touching and who might have touched it before you, who wasn’t quite as clean as they should have been maybe fixing your food or opening the bathroom door)

You try to figure out how to make the keys to the car/door/mailbox big enough (or turn easy enough) that your fingers will be able to unlock or lock or start or shut off whatever it is that needs the key to work.

you can’t color because the crayons are so small

You know that someone avoids anything physical with you because they are afraid that they will hurt you.  You maybe appreciate that they are being careful, but there are times when you would much rather deal with just a little extra ouchie rather than dealing with feeling like you are a bother or that you are too RA to be touched and hugged and played with.

Not every day is this bad.  Not everyone has these situations or has them to the same degree (my RA isn’t your RA as the commercial says) but it is what it is, and it always will be. But everyone with RA has had the pain that hurts the body, but hurts the heart and the spirit even more more times than anyone would like to remember.  And that is a pain that Prednisone or NSAIDS or even Darvocet can’t chase away.  It is a pain that pokes at you every time you remember what you miss.

I try hard to stay positive most of the time in my life.  I figure that how I look at something is as important as the something I’m looking at.  But sometimes reality is what it is and some things just need to be said.