Monthly Archives: September 2013

A Rant On My Rheumy’s Nurse

Okay, so… I don’t CALL the doctor’s office very often. I usually just suck it up. I figure I have RA, I may as well accept the fact that I have RA and live with it. Usually, it works out pretty well for me.

I was told at my last infusion that, if I don’t see significant improvement over the following couple weeks, call them. I was told that, if I see anything weirdly different, call them.

So… I noticed stuff and I called them.
MY BAD…

I called and let them know that my feet and hands are still kind of floofy even 2 plus weeks after infusion. I called and let them know that my hands tingle and feel like they are falling asleep. I looked it up on line and was told that I should let them know stuff like that. So I did.

Advice?

Wear carpal tunnel braces on both hands all the time. If it doesn’t help, call them back.

Really?

Okay…
Because I call so often when something is wrong. The last time was two years ago when I got bursitis in my shoulder. I know they get calls all the time because people want to be fixed their way right away. I don’t call. Ever. Unless there is something that seriously needs to be discussed. Labs… tests… something… and then it is almost always returning the call.
I called because I was told to keep her apprised.

And because my hands have felt tingly for three days and I’m having some interesting weirdness.
I guess I will go strap on the two 2X4s and try to drive for a while and see if that takes care of the weirdness. Or maybe not. Since I know it isn’t carpal tunnel (THAT is only a few fingers, not all of both hands) and since Crystal isn’t ABOUT to ask questions or talk to me about anything, I guess I will wait until my next infusion appointment and talk it over with the doctor. That way I don’t actually have to play nice with the nurse and I can talk through what is going on, not leave a voice mail and allow a ditz to interpret.

People didn’t like my Rheumy’s old nurse. He had a very interesting sense of humor (one that irritated a lot of people based on things I read on line), but I was from the part of the country where he was from, too, so I got the humor most of the time. He would have called me back before he helped the Dr make a decision and talked to me about what was going on. He would have asked relevant questions and not made assumptions. I miss him.

Crystal is pleasant enough. Her sense of humor won’t piss anyone off. She has none. At all. All business all the time. It’s her style, and I guess it works for her. I would rather have a little more personable, but that’s just me. I understand that she is the gate keeper and she does a very good job at gate keeping. If you can sit through the 10 minute message before the beep (if this is for refills do this, if it is for records do this… or maybe that, if it is an emergency call 911… this recording will be listened to ever 2 hours and I will get back to you when I can… beep) you can leave some kind of message and hope you make it before you get cut off. I guess whatever you can manage to cram into the gap is sufficient to make it through the gate. Or not. I know know.

So I sit back and wait. I don’t guess too much horrible can happen in 10 days. Obviously not anything worth noting, anyway.

Tomorrow morning… 3 mile run then off to the state fair.

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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

October’s 30 Things You Didn’t Know About Me

I saw this post

http://spoonshortage.wordpress.com/2013/09/16/30-things-you-didnt-know-about-me-%f0%9f%91/

On a spoonie blog that I just recently found thanks to Facebook. I love the idea of posting a fact a day that might be way obscure. I think I’m going to try to do this!!!

A Different Time A Different Mindset

Bird

It’s pager patrol week.. again. And it started out to be a bad week. I got paged for stuff all night long. For stuff I had to try to keep ahead of that I had no control over. It got to the point that I was getting paged about every hour and I would jump so my databases wouldn’t fall over and then I would try to do something between pages. It wasn’t working.

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I tried to go for a real run. It was SIXTY SIX degrees at 6:330 in the morning. I wanted to get out in the gorgeous morning so bad. I made it three tenths of a mile and got paged. I ran home and did my magic. And got really upset because I really wanted to train… to run… to get out in the beautiful day.
I finally got talked into at least trying to go around the block. I finally sucked it up and tried my run.

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And it made all the difference in my day.

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I was GOING to go out into the dark. My race is in the dark. I keep thinking I need to train for the dark. But when I finally went out, it was daylight. And in that, it made so much difference. I got to see some of the prettiest morning glories climbing and creeping and shining in the sun. It wasn’t so hot that they shriveled right away. They were stunning.

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I got to race a couple toddlers on bicycles complete with training wheels. The sidewalk was heavy with mud from the bike tires. The rain brought the cooler weather and the mud and brought out the giggles of kids racing a weird lady walking very fast through the neighborhood.

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I saw blue jays (who did NOT want their picture taken even from reasonably far away), five of them, munching worms (presumably) in the yard.

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But I did see the neatest bird with a read head. He was really neat. I thought he might be a woodpecker… but I think maybe he was a dove.

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Ad I ran, I listened to music. I talked to the trees, and the flowers and the birds. They listened. I thought. I changed the way I thought.

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I ran some, walked some. I ended up actually doing the run I do most days. Not the long run I was supposed to do, but based on the training plan, my “long” run should be about the run I do anyway.

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Was it runners high that I felt as I walked in the road, sweat dripping down my neck?

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I don’t know. I do Know that I felt better after the run, and the day looked up. I still love running through the dark, but… it made all the difference yesterday.

Pager week will never be conducive to my long runs, but I feel so much better for even getting in my short ones.

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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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On Crossing The Finish Line

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I watched a Run Disney video on YouTube this morning showing how people cross the finish line. There are so many reasons why people cross the way they do. It’s really neat to hear the stories about why they do … Continue reading

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Slithering…

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Fear, like the fog, slithers in and through and around. Fog leaves its damp trail on the roads and the lawns. It licks the trees and fences and guard rails. The damp taste of metal feeds its silence. It weaves … Continue reading

Orencia Infusion Week

Started out to the gym this morning. Turns out they are only open 24×5 and open at 8 on the weekends.  So… a 14 mile round trip wasted at 5 am.  Sigh.

Got home and started working on stuff at home… crochet projects I want to get done, have to get done, enjoy working on… writing… answering pages on pager patrol… I realized that my knuckles ache this morning.  I also realized that they should have ached a few days ago if the last few months were anything to go by, so I’m thinking that I’m continuing to improve.

So, right now, I smell of Tiger Balm and thinking that I’m really glad that Tuesday is my infusion day.  I’m waiting until 10:30 to take my Delsym so I can hit the gym when I take my little girl to work and get my tummy shot when I get home.  I’m dwelling on trying to get better… because I need to get better for me.

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All about the perspective

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So, I’ve been dwelling a good bit lately because I know that people think I’m as dumb as a box of rocks. My post yesterday kind of dwelt on that. I’ve been torn between being dumber than a box of … Continue reading

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Drowning Out Negativity

The world in the predawn is quiet.  The coffee is cold (Adam made it sometime last night) but the girl scout cookie creamer makes it taste very yummy and very welcome.  It’s the first not black coffee I’ve had in … Continue reading