I subbed up at the school yesterday as the librarian.  Some days are quite quiet up there, but Tuesday’s are her big day: 6 classes back to back with a little break to eat & shelve books in the middle.  The regular teachers like to use library time as a place to park the kids while they go off and do other things, so it’s all up to the librarian to get the kids through a lesson and finding books and checking out and then time in the computer lab.  (Some teachers do stay close by, but busy.  One actually stayed and helped, which I LOVE her for.)  By the time the third period had gone through my hands were swollen up big enough that the bigger sized rings that I was wearing were too small for me.  (I need to remember to get them out of my wallet still.)


Anyhow, my day wasn’t over then.  Middle boy had dance class, then both the older boys had piano lessons, then we came home and did all the days chores (we’re trying out, by the way.  It’s a bit of a beast to set up, but the kids are LOVING it so far), the dishwasher overflowed all over the kitchen so we had to clean up that, and my husband finally came home from the meeting at the middle school that I was supposed to attend (but was too tired to).  We ate leftovers for dinner.  Yeah.


And today we do it all over again!  Though with less after school craziness.  So glad today is Wednesday.


Infusion day

Yay! I can tell when I’m due for an infusion now. My shoulder starts acting up. It’s like clockwork.

Today the infusion room was packed. All four chairs had people in them and one person even had a visitor with them (watching TV loudly on his phone). I pulled out some cards to write, glad that this time the nurse was able to get my left arm to behave so I could get things done. One by one, the people around me fell asleep… And they all snored! It was quite funny actually! The guy on the phone gave I on hearing his phone over it all and left. :).

I spent the rest of the day resting. Tomorrow I work at the school. Whee!!

Nothing new

Writing is a struggle against silence.

–Carlos Fuentes

Just checking in, keeping up the writing thing, cause that’s part of my ongoing goals this year.  I had a writing retreat with a longtime writing friend/partner in crime this weekend.  We traveled to an undisclosed location and holed up in a tiny studio apartment and wrote, read books on writing, and shared notes on writing related things.  Now we’re trading our WIPs (works in progress- she has one to trade, I’m still trying to get there) for reading and helping along.  🙂  It was a really good weekend.  I’m feeling all refreshed and writerly again.  I organized my writing folder, downloaded the latest version of Scrivener (writing software that my copy of was an old bug-filled beta), and wrote more yesterday.

The downside of all this travel and writing is that I’ve remembered now part of the reason I stopped in the first place: the pain.  Oh the pain.  Wrists, fingers, elbows, shoulders, back.  I’d forgotten how bad it can get.  So now I’m looking into some other ways to get my writing in.  I’ve got a memo program on my iPhone that will translate my words to text; which it’s doing better than I thought it might.  It just doesn’t have a Save function, so then I’ve got to copy and paste by hand.  I’ve just spent thirty minutes with the Speech Recognition software on my computer.  The tutorial made it seem easy, but the actuality is not so easy.  It doesn’t like blogging. 😦  Maybe I’ll just have to copy and paste a lot.  😉

I’ll let you know how it continues to go.


Physicals, or check-ups as I like to call them, are so delightful.  This time around they had a totally new computer system that wanted to know my height and blood oxygen levels and whether I was left or right handed.  Woo hoo.  Apparently I’m an inch taller than I think I am.  I pointed out that the last time I’d had my height measured I’d been 18 and barefoot, but the nurse did not care.  5 foot 5 is my new height. It’s in the computer so it’s official. Well, okay, then.


Other new things:

– More blood work.  Fasting.  Tomorrow.  Oh yay.

– I need to lose at least 20 pounds.  Me: “Yes, I know, but it’s very hard to lose weight when you spend quite a lot of time not being in any condition to exercise properly.  Isn’t there anything else we could try?” Doctor: “Since you have a heart condition….”  Me: “Wait, what?!”

-I have a heart condition.  Undescribed.  Awaiting some test results.  No big deal.  Umm….

– (back to the weight loss woes) “… you can’t have drugs to help that along.”  I can, and should: walk, do low-impact exercise, swim, etc, and eat healthy.  Which I’m already doing, but I’ll try harder.  Maybe I’ll just travel everywhere with whole grain bread and tea and carrots.  Why not?

– The doctor checked EVERYTHING, even my swallowing and listening to my throat at rest.  I have no idea what that was about; he’s never done it before and frankly at this point I couldn’t handle anything else.

– My left side is way less limber than my right side.  (Wherein I realized that my rheumatologist never does range of motion checks any more.  Hmm.)  Arm, leg, protesting.  Which is weird because it’s my less grouchy side, at least the side that generally hurts less.


I think that’s it.  More than enough.


I hate flares

Yesterday my left leg started hurting, terrible jabbing pains, up and down, first here at my hip, then at my knee, my ankle, and up again. It was almost like extended muscle spasms. I could barely walk, even just to go to the bathroom. Then whatever it was attacked my left arm, followed by my right. It was awful. I got up this morning to right leg pain and decided to go ahead with my prednisone taper. Made it through the day all right, but am not feeling well at all. 😦

Open a book…

…and write about the word or passage you open to for 15 minutes.  Ahh, freewriting, how I love thee. This is supposed to be totally unedited: expect a lot of tangents, please.


My computer is set up under a bookshelf, with two more off to my left close by.  There’s another two here in the room, though not close by, and one in each bedroom.  Finding a book is not going to be the problem: choosing a book will be.  I’ve decided to do the old “grab one without looking” and get one from above my head.  Here it is: “All in My Head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening headache.”   Oh how funny: It’s totally mishelved.  Health books normally live in my bedroom.  That shelf should have been a combination of writing, parenting, and books of sci-fi anthologies.  The “doesn’t fit on its proper shelf” shelf, in other words.


Now for the passage: it’s page 142 and she’s gone to the doctor with this unrelenting headache and this particular one has prescribed biofeedback.  She’s making cracks about how if she had something like diabetes she could sue for malpractice if she were told to just wish her illness away, but with a headache they (the doctors) thought this was perfectly reasonable.


I like this segment.  I feel this way a lot about the RA, in fact.  A lot of the time the doctor just says “well, you need to be less stressed.  rest more.  don’t try to do too much.”  How does that help me in any way?  Is he going to come watch my kids and clean up my house and keep up with my life for me while I’m resting?  The doctor will say “I don’t know why the hip bursitis won’t go away” and well, neither do I!  It just doesn’t.  I’ve tried PT, I’ve tried injections, I’ve tried lying down more, moving around more, meditating on the pain leaving my hip more.  Does any of it work?  Not particularly.  No.

Here’s the thing: I know I have things wrong with me, I know they are not just “all in my head.” But we are so often treated that way when we have RA.  I can’t help it if my hand flared up last week and it hurt like hell for two days just because I took a dish out of the dishwasher wrong, but then on the third day the swelling went down and it felt normal again.  I wasn’t making it up when I said that it hurt.  But with RA sometimes things do hurt just like that and then go away just as fast.  Sometimes they don’t.  My knee, for instance.  I feel down on it weirdly three years ago and it has never been the same.  I still have that area of complete numbness on one side where I know something went dreadfully wrong.  The whole leg moves differently now.  I get bursitis in the hip on that side now.  But has anyone ever scanned it to see if there’s something going on in there?  Nope.  “It healed nicely” the doctor said of the wound on top of the skin and left it at that.


Wow, fifteen minutes went by fast!  I had more to say, but the timer has gone off and my shoulder is telling me that typing time is over, too, so I suppose I must go.  Be good! 🙂 See you tomorrow!


This post was written as part of NHBPM – 30 health posts in 30 days:

My new favorite place

Life is like a blanket too short.  You pull it up and your toes rebel, you yank it down and shivers meander about your shoulder; but cheerful folks manage to draw their knees up and pass a very comfortable night.  ~Marion Howard

I did something I promised I wouldn’t do earlier this week: overworked myself into a flare.  See, I’ve been living very carefully these last couple months.  I’ve slept a bit more each night, eaten a little better, rested for an hour or more each afternoon, made sure not to schedule myself into oblivion most weeks.  I knew that I was living on this borrowed time, this near-remission that I was experiencing was like magic, and like magic it needed to be believed in just a bit harder to be achieved.  And this week I thought, enh, I feel great, this is LIFE, this isn’t magic, I can go back to regular things, do what I like.  So I moved some furniture and a room full of stuff got shifted around and around.  I ate a few too many things, didn’t spent my afternoons at rest, skipped out on a few of my glasses of water each day, ran a dozen errands one day.  Then, BAM, it hit.  Not just a little hit like I’d been having, just a few fingers or a shoulder that twinged a bit, an ankle here for a couple hours or a hip there as I did the dishes.  All of a sudden I had a spine that wouldn’t bend.

So I spent all day in a chair in my living room, feet up, e-book queued up, kid bringing me whatever he could get me.  It was nice for the first hour or so after all the pain relievers kicked in and the heating pad did its magic.  But as soon as I got up (a bathroom visit), I realized that this wasn’t my usual kind of pain.  This was more serious.  I hobbled back to my chair, got the remote controls to the TV out, and prepared to let the kid watch TV for an hour or more….