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Where did my week go?

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Sitting in front of my window watching out at the not quite yet winter storm round whatever round this is.  We are supposed to get half a foot of snow by tonight.  Should be interesting.  I plan on surprising the … Continue reading

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Freaking Cold

So… today I go back to work.  A week of vacation and a day of work from home and today I go back.  It’s going to be -1 when I start my mile walk from my parking lot to work.  I’m … Continue reading

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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On Finding Thursday’s Normal

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Thursday is 9 degrees of sparkle on snow, a fullish moon, pictures through icicles, chocolate raspberry truffle coffee, 20 milligrams of prednisone and 1000 milligrams of napproxin (yes, I know that is too many) and it is one day closer … Continue reading

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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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Epically Exhausted

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Twas the Day After Christmas

Sitting here in the livingroom smelling the remnants of yesterday’s fire, Christmas tree for company and Mythbusters on TV. Pumpkin pie and coffee…  I started my work day early today trying to get ahead of any curve that might be coming my way when “normal” people come in.  Something tells me it’s going to be a long day.

The flu brought on a flare.  My fingers are not happy and my knee/ankle/foot combination are very very not happy.  I’m thinking that working from the couch with my feet propped up on the coffee table might be my very best bet for the day.  Yesterday my knee/ankle was very bad by the end of the day.  Bear barely bumped my knee and I winced in pain.  I sat on the floor watching the turkey for the last half hour of the turkey cooking time… watching to see if  I could see the timer pop up.

The turkey was very very greasy.  The skin wasn’t the yummy crispiness that Thanksgiving’s was.  But it was a good turkey.  The ham was ham.  Dinner was really good, though.

Today, I’m thinking back over the last year, trying to psych myself up for the rest of the day and trying to be gentle with myself.  Tiger Balm fills the air.  I have checked the weather report fifty times.  It’s not going to get cold.  I’m almost as disappointed as my son that the weather refuses to turn seasonal.  It’s going to be 47 degrees today.  It’s going to top 50 again tomorrow.  I really really want to see the cold and the snow.  Logic dictates that there is lots of time for the season to turn cold but Christmas is Christmas and it was far from white.

The holidays are not over yet.  There are still hours and hours of potential stress and festivities.  Whatever you do, remember to be gentle with yourself.  Be gentle with your body and take time for absolutely nothing… it can certainly pay off.

What did I learn from having the flu?

— be very VERY careful in a race situation.  You come into contact with the germs of thousands of people and, an already compromised immune system, germs are germs.
— no matter what anyone thinks, the doctors, the CDC and the vaccine manufacturers all agree… the flu shot is reasonably effective in lowering your chances of the strains of flu that are included in the vaccine, not the ones that aren’t.  It will not prevent the flu and anyone who comes up with the snarky remarks about you should have gotten the flu shot and you wouldn’t have gotten the flu if you would have just been smart and gotten yours is full of… um… themselves.  BUT this is assuming that the CDC and the Doctors are a little more edumacateded up than Lucy Lou and Skippy down the street are.
— the flu sucks.  All kidding aside, I don’t ever know if I have hurt in that really horrible all over hurt worse than the day I actually came down with the flu.
— when they tell you it takes a week or more to feel better, they aren’t kidding.  It takes a week.  And with RA tossed into the equation, the absolute exhaustion and continued run down feeling hangs on even longer.

If you have a compromised immune system… get the flu shot.  The more variables you can take out of your health equation, the better your chances are of getting through the season without coming down with something that could land your butt in the hospital (or worse).

And… it’s time to get on with my day.  I hope I’m wrong about what is going to hit the fan today with everyone out of the office… but… for now, I’m going to try to get done what I can while I can.

I hope you all had the Merriest of Christmases.

Taking it as a Sign

OLYMPUS DIGITAL CAMERAYes, mother, occasionally I do shut up and listen!  :)
and yes… this might JUST be one of those times.

I’m sitting here watching my movie copy to my phone (I know what I’m listening to today) and thinking.  My fingers are kind of whining (It’s going to be a Tiger Balm kind of day, I can see it already) so I’ve been being gentle with them.  The flu really kicked my butt and I’m trying to be gentle with myself in general.  It’s not easy.  I’m stubborn.

Over the weekend, I got my Royalty statement from Amazon.  When I saw it, I rolled my eyes.  My last one topped out at about… oh… a buck and a half.  At the time I figured it was a fluke.  People I knew, maybe, were being nice and coughing up the 99 cents for one of the essays I have out there.  I filed it under “I get a new song” and left it at that.

To be fair, this one isn’t going to be a WHOLE lot more than that if it tops out at that much.  But it made me stop, this time, and really look at it and think.  The essays (I haven’t uploaded another one in a couple years) haven’t been publicized.  I haven’t marketed them. They have just lain there, moldering in the the digital darkness growing dust, cobwebs and probably feeling lonely.  And still a few people (not even a whole handful) found them, and bought them.

As the flu and lack of MTX have wreaked havoc on my hands the last couple of days (there has to be some irony there) I’ve thought about those facts and I’ve decided to shut up and listen.

I’m going to re-download the formatter for Kindle/iBooks/Epub (and re-download all of the garbage about the how-to’s and wherefore’s of publishing on different devices) and start putting a little more concerted effort into my writing.  I’m not convinced I’m ever going to write the great American novel… but novel isn’t maybe where I’m supposed to be.

I’ve been thinking… and… I think it’s time I shut up and listen.

Infusion Week Flu

It’s been a long and interesting week.

Sunday I started the Santa Hustle Half Marathon at Cedar Point.  I didn’t finish (and I’m even more glad now than I didn’t than I was before) but I started, and I made it half way.

Monday I made it to work.

Tuesday I had before and after hours work to do (and I HURT from the race) so I worked from home.

Wednesday was infusion day.  Was feeling pretty decent by Wednesday.  Afternoon was my infusion.  They did a blood draw before the infusion (my quarterly blood tests) and then my infusion.  I had cookies and Gatorade.

A couple hours later we went to Walmart and I started to feel horrible.  Stomach ache and exhausted became EVERYWHERE aches and freezing and exhausted.  EVERY joint screamed.  I hurt from the end of my toes to the most horrible not-migraine headache I can ever remember having.

Bad enough I called off work Thursday morning and went to the doctor.  I vaguely remember being there. I had a low grade fever.  I vaguely remember walking to the car after my appointment.  I vaguely remember getting home.  Sleep, I learned, is definitely your friend with the flu.

$40 worth of Tamaflu at the ONLY pharmacy in town known to have it (the pharmacy at Cleveland Clinic) and that’s all I remember of Thursday.

Yesterday my rheumy called.  Turns out my blood work came out with an elevated white blood count (go figure) and I’m off my methotrexate until the Sunday a week after I start to feel human again (so… I’m guessing January).

I was instructed to NOT go to work until at least Monday so I can keep from infecting my co-workers. So I worked from home Friday.  It’s the holiday and my team is growing thinner and thinner and I need to be Johnny On The Spot through after New Years.  It’s going to be a long holiday season.

Yes.  I got my Flu Shot.  I got my flu shot before the doctors ever even thought of trying to get me to take my flu shot.  September, about 2 weeks after the flu shot signs started to appear at the local pharmacies I got my flu shot.

Funny… Rheumy told me what everyone else (well… all the medical kind of people anyway) has told me.  The flu shot doesn’t prevent the flu.  It makes the flu you get (if you get it) less horrible and helps prevent one or two or a handful of types of the flu.

According to the CDC the strain of the flu that is rampant right now isn’t actually included in the flu shot.  This year’s flu shot is primarily H1N1 and a couple strains of influenza B.

Please don’t be lulled into a false sense of security by the fact that you have gotten the flu shot.  If you feel sick, go be seen as soon as you start to feel awful.  Tamaflu doesn’t make you better but it makes you feel less crappy.  TAKE ALL THE PRECAUTIONS YOU CAN to avoid the flu germs especially for those of us that are immuno-suppressed.  If I wasn’t on MTX and Orencia would I have gotten the flu or gotten it as badly as I have it?  I don’t know.  It’s immaterial    I have it…

I know that hand sanitizer (handsitizer) isn’t all the answer and bleach wipes and Lysol isn’t all the answer and that I’m going to go a little nutsy over trying to make sure I don’t get it again and I don’t get another strain this season because I’m going to use everything I can to prevent it.

This year, I drew the short straw.