Category Archives: pain

A Month of Ups And Downs

March has been quite a month for me.

Today is hard. Today marks exactly one month since my silly Bichon, Peanut, crossed the rainbow bridge. I know she isn’t hurting any more. I know she can see perfectly again and she can eat all of the nummy white bits of dog food that she hadn’t been able to eat is years and years. She’s free and playing like she hadn’t played since she was a young pup. I know she’s okay now. She knows she is loved… that she was always loved… that she was the bestest dog there ever was.

I’m hurting.

I miss her so much. I talk to her all the time. Her footfalls haunt the house.

The day she died was the 5k at Disney. The next day I ran the 10k because I could not let her have died alone and far away in vain. The next… 10 half marathon. I talked to her the whole race. I carried her puppy collar. It was an amazingly good and an amazingly hard race. But I did it.

And we came home. We came home to a very lost cat (his best friend was gone) and a very quiet house.

And we went to the SPCA and adopted… Goofy.

We went from a too fat Bichon who topped out at 22 pounds to a Mountain Cur Chocolate Lab mix (Goofy) who might go anywhere from 60 to 90 pounds by the time he is done growing. He’s almost 5 months old. He’s 46 pounds as of two minutes ago. BIG difference. And he has stopped wanting to use the cat as a squeaky toy.

But the house is less quiet.

Early March… elbow surgery. Now my weird bump is gone. I have a snazzy scar. I know it was only ganglion cyst. Life goes on.

It’s been 7 weeks today since my last infusion. I hurt. I’m emotionally flakey. I’m achey and exhausted and I’m very very ready for my infusion. By early next week (just in time for puppy pictures with the Easter Bunny) I will be able to start back to running. I am looking forward to starting to run with my new running buddy. He will need to learn to run with my intervals. I will need to change my intervals to help him learn.

I have started using Goofy as weight training. We put him in his crate at bed time every night. 46 pounds of lifting and carrying. When we do walkies, he pulls, usually pretty hard. I’m doing some funky weight training.

And today is a month to the day. I don’t know if I will ever be able to watch the Lion King show at Animal Kingdom ever again. I was sitting in the lion section in the front row when I got the call. But life goes on. And Peanut taught me so much in both life and in death. She has helped me and taught me and in my heart festooned with paw prints, she lays curled up and sleeping.

Today, I get my infusion. I can stop hurting and being exhausted and on the verge of tears every second. And life can not only go on, but get into a new rhythm of normal.

It’s all… what it is.

Love and Light
AprilJoy
3/22/2019

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Pain Changes You

I was once told that pain changes you.  When I was discussing the pain, I knew that the statement was correct, pain changes you.  But I was thinking more directly long term.  Pain, or at least the understanding and the … 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…

 

It’s the best of times, it’s the worst of times

I love fall.  Even in a place where there really isn’t any fall, I love fall.  The low last night was 47 degrees.  The windows are wide open (the cat is deliriously happy) and the sounds of the night are creeping into the house.  The smell of the rain creeps in with it. The wind makes ghosts of the curtains.  And, when dawn comes, the feel of being outside in weather that doesn’t stifle every breath is amazing.

And I’m sitting here working, feverishly, to finish a pair of wool arm warmers that will come down over the ends of my fingers if necessary while warming my fingers (raynauds… gotta love it) with HotHands hand warmers.  I’m thinking that it might not be a bad idea to go soak my hands in hot water.  Sometimes (like this morning) I think longingly of one of those amazing hot wax baths that you can use to ease the pain.

This is the time of year that speaks to my heart.  And reminds me that I’m not the person I used to be when I was jumping into leaves and raking leaves for my kids to jump in.  Now I fight back the cold that settles into my hands and feet and fight to really enjoy the day, every day.

Coffee cups double (only double… the coffee is always what matters most) as hand warmers.  Wool socks over warmed feet hold in the heat most of the day.  And I stock up on these handy dandy hand warmers to help when other things don’t.

It’s fall, creeping quickly up on winter.  Enjoy the beauty of the season!

 

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On Taking Shortcuts

Okay, so, this week I did an interview about real life tips and tricks for living with RA for a magazine.  I also read an article in the Wall Street Journal about the Balloon Ladies that are part and parcel … Continue reading

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Taking Inventory

Sitting here, cold coffee (not iced, just cold) by my side, wishing the pumpkin creamer was thawing faster. I’m running through the joints in my body, taking node of what feels how. The smell of Tiger Balm hangs in the … Continue reading

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Whining and Kvetching

I just had a nice little chat (is it called a chat if you are talking over text message?) with a friend of mine.  We used to work together and periodically we chat.  For the longest time (a couple years) … Continue reading

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So, I sit here, listening to the wind blow the cold front through. It’s going to get chilly tonight. I’m looking forward to that with mixed feelings. On the upside, it was 84 degrees when I left work today… it … Continue reading

Yoga? Really?

 

 

 

 

 

You’ve heard them.  And you have probably gotten extremely irritated by them. Those ever so well meaning people who tell you that, if you would just exercise more (maybe take up yoga) you would be all better and you wouldn’t have to rely on those silly meds any more.

You know the first thing that goes through your mind.

If I could do yoga, don’t you think I would love to do yoga, but I know how badly my body hurts just getting through my day and trying to stick my left big toe in my right ear while standing on my head is just not happening.

Why exactly do you think that people who weigh over 120 pounds, or who hurt or aren’t limber or who aren’t “perfect” don’t take up yoga?  Any guesses?  Anyone?

Look at the people coming in and out of a Yoga studio.  Look at the pages of Yoga magazines.  You will get a pretty quick idea of why.

I get the Nook version of Yoga Journal and I read it (albeit with a bent to what I can learn not usually because I want to be able to stick my right toe in my left ear while standing on my head.  There are some amazingly well written and insightful articles.

But lately (as I hear more and more people talk about how maybe I could be fixed if I would just <insert quick fix here>) I have been looking as much at the pictures in the magazine to see if I can’t figure out why people I talk to don’t think they can take up Yoga.

OH BOY.  Yeah, I know why no one feels they can.

On this month’s cover…

Blonde with not a hair out of place despite doing poses on a cliff side overlooking the ocean.  Bare midriff.  Tight spandex pants.  She might weigh 125 pounds.  The only thing missing is a bellybutton ring.

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Random pages…

Vintage VW Bug with another 115 pound girl on the roof… in the middle of a field of flowers…

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Two women sitting on a wooden deck, laughing together… neither has an ounce of extra flesh…
There are the women at the south pole (I guess they are at the south pole. they are standing on mats outside in the snow next to a pole and it says the south pole) and the quote in THAT bit says “it lets us take our big boots off, feel our feet, and just stretch”.  The picture is outside in the snow… Funny… Not one of them has their boots off, but they don’t look like they are freezing, either… despite not one of them weighing over 120 pounds and despite the fact that one is doing tree, one is standing on her head, and one is squatting with her butt inches from the snow.  The poses are perfect.
There is the well muscled woman on the side of a granite rock.
OH HEY, a guy.  Also buff and fit.
None are sweaty.  Not one are doing any kind of adaptation of the perfect poses. NONE look like they hurt or are in any way sweaty or un-perfect.

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WOW… I found her!!! The ONLY woman in the last couple issues of the magazine (I haven’t gone any further back but I have a hunch…)  on page NINETY TWO of the magazine, back buried in the “continued on” section near the rest of the adverts… The token woman who weighs at least 150 pounds.  She is doing a way better job at the pose than I could, but at least it isn’t perfect.  She isn’t the stereotypical yogi.  SHE IS ON PAGE NINETY TWO.  And she is in advertisement for a yoga retreat (not ACTUALLY in an article)… but she is there.  Hidden in the back… where you would not likely look if you were flipping through the magazine.

I love the magazine.  I read the articles.  I hate the fact that no one in any of the articles looks ANYTHING like me.

You can do yoga.  Honest.  I started yoga right after my diagnosis to try to stay ahead of the pain and the stiffness.  You can adapt poses and use props to do them.  Some of my favorite parts of yoga are the Pranayamas (like here http://www.abc-of-yoga.com/pranayama/)… breathing… thinking about where stuff hurts, and taking as deep a breath as I can and sending my thoughts and the breath to where the pain and stiffness is.  Some days, this is the only yoga I can do (the poses are just so far beyond where I am that I just can’t).

You CAN do yoga.

You don’t have to be perfect at it.  You don’t have to look like the stereotypical yogis.  You don’t have to wear the “right ” clothes or even do half the poses.  The point is more taking time to meet yourself where you are and change the way you are thinking during that short amount of time.

It isn’t going to “fix” you, but it can help make you more comfortable in your own mind.  It can help with the way you feel about you, if not the way you feel.

Yoga doesn’t have to have anything to do with being perfect, only meeting yourself where you are and meeting your own needs.

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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