Tag Archives: RA

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Stress… change… parties… doctors… and taking a deep breath

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O-Dark-Thirty… listening to iHeart radio on the Echo Dot my boss got me for Christmas. I was kind of looking for a gift card, but I’ve decided I really like this option better. I don’t have to use my phone … Continue reading

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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.

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.

Socks: a retrospective

It’s scary how much time I end up spending thinking about some things since my RA diagnosis. I know that, along with my RA came Raynauds as a secondary condition and that is a huge contributing factor to the fact that my fingers and toes are always cold. But it still strikes me as odd to think so much about socks.

When they clearance the winter stuff and the “spring line” starts to come out at the stores, I always go looking for wool socks. I don’t just wear them in winter. I sometimes wear the pretty socks or the business socks in my drawer, but I’ve fortunately acquired enough wool socks in enough colors that I can rely on them to get me through on days when I know I’m feeling cold. And AC can make my feet and fingers freezing so it is as many days as not.

I recently discovered wool and silk blends and got a couple pairs of them that I absolutely love. They are soft and warm and stay up! Staying up is a problem I always have when I buy the 6 or 8 or 10 packs of athletic socks at WalMart. After a couple washings they start to fall down around my ankles, and they are knee socks or at least over the calf socks. I hate the feeling of them slid down. And that feeling is so not like just buying and wearing ankle socks. It just feels wrong.

This morning I put on the no slip hospital socks that bear got when he had his colonoscopy. They didn’t actually make him put them on and he wasn’t going to bring them home because they are just funky. No slip grippy stuff all the way around and tube socks. They are pukey brown and have an idiot smiley face staring out of two opposing sides. Who thought these up? Because having your feet smiling up at you when you are in the hospital is going to make you feel so much better? But socks are socks and they came home with me. And this morning they are keeping the chilly off my feet.

Who thought up putting registers on the wall to blow on your feet? In the summer, the AC is just too cold on your feet, and in the winter you want to be warm all over not just on the floor. I know I know, hot air rises, but it still feels counter intuitive. I was raised in a house with a coal furnace. Registers go in the floor blowing straight up… all the better to dry your hair in five minutes first thing on a snowy morning!

But I digress…

If you tend to have cold extremities, you know how important it is to find the warm. I love my Injinis toe socks especially in my Vibrams five fingers shoes (Go Hobbit Feet!!!) and the wool toe socks that I bought last fall are still holding up remarkably well. No holes. Still going warm.

I don’t understand why the 6-8-10 pairs that you get at back to school time don’t hold up any better than they do. I mean, I get planned obsolescence, but geeze… it just makes me want to not buy them at all.

I get that socks are a fashion statement and everything.  And I get that companies have to make money.  But I would far and away rather buy something that is going to keep me warm (which I think is what they are supposed to do anyway) and hold up without my having to add in elastic later than to just buy the cutsey or the garbage.

I can’t wait till gloves start showing up at the store (any day now). Since texting has become a big deal for everyone, and the gloves to facilitate have too, I can now use gloves with fingers all day long on my laptop! Technology is starting to catch up with what I’ve needed for years.

I wonder what colors this season brings!

It’s all in the timing…

OLYMPUS DIGITAL CAMERAOkay, There comes a point where I have to remember to shut up and listen. I know I realize this periodically. Life has been reminding me of that quite a bit lately.
This morning, I sat waiting for the lift bridge and for not one but two freighters to go through the Cuyahoga river. I realized that I live in a city replete with lift bridges and drawbridges… and with a river like this there comes the necessity of occasional pauses in the day’s hurry scurry, helter skelter bull…$%^&… There are times where a pause is just a pause and the pause is exactly what is needed. Time enough to watch the smoke stacks of the boats make the bend… to hear the birds and the metal on metal screech whine toot of the trains… to see the bright yellow canary in a bright yellow flower… to take a slow deep breath (or twenty or thirty) and relax. Was I late? Yep. Was it all good? Yep.
It’s funny… I had just gotten off the phone with my mom when I got stuck in traffic. We were talking about being where you need to be… where you are supposed to be… and… thoink… duh…
I was hired at US Steel because Ida Flynn told me that I was GOING to go test for the Internship at US Steel the ONLY semester I could actually qualify the ONLY week I could actually test (given that we went on vacation) in a college career that was end to end in 2 years and 4 months. Yes it is possible. Yes, I regret not doing it slower because my QPA would have been better. I swore I would never work in a big city. I worked in downtown Pittsburgh. I was department lead for the Y2K project with 12 contractors and I had an incredible implementation. It was such a good job that I was “rewarded” with being transferred to the iron range of Norther Minnesota. Which is beautiful and where I saw eagles and heard loons and I watched the northern lights.
I was told when I left US Steel that I would regret it. I don’t. It’s ironic.. .the boats that fascinate the crap out of me now are the ones that left the port of Duluth carrying Ore… the pellets we made that came from the dirt we blew up. I don’t regret it. I miss the northern lights and listening to the lakes freeze in November, but I don’t regret either going to MN or moving from MN. I learned how to be an Oracle DBA in Mt Iron and that backup and recovery are the most important parts of the job.
I left there for Amarillo. SMALL company… friendly town. I was hired as a DBA despite having no REAL DBA experience, because I was trainable. Turns out Trisha was right. I am trainable. I learned to be a good DBA and I learned (in 900 hours in 3 months) to be an Apps DBA. It meant I lived my dream of publishing a book and it laid the groundwork for the next steps. The company was acquired by a huge company in Chicago and I went looking for not Chicago.
Poof… Austin… BAD company to start out with… then Oracle… then another company where I lost myself. Where I learned that I have the ability despite RA to bust a move and walk a half marathon or four. My first I hurt so bad I almost quit yards from the finish line. My second, my son medaled me despite the flu. My third bear and squirrel girl did with me… and I thought I was going to not make it… and I walked in with my son and (even though I still don’t think I’m anything special) I became his hero. And because I understood what forever conditions mean, I was able to cope when my daughter got Epilepsy, when my son got epilepsy and when my son got Sjogrens… and when friends ended up with RA, I was able to be there, to tell them that it is not the end of all normal and to get their butts into the doctors. It took some time for me to get my head around the fact that Autism isn’t the end of normal, it is just a different normal and that sometimes when you get answers to all of the hard questions in your life you can take a deep breath and relax and be your own beautiful self. I’m incredibly proud of my little boy who just took a deep breath and became himself.
And now, here I am. Because I was incredibly frustrated with being told how worthless I was I started looking for elsewhere to be. Because I was scared that the 412 area code on my phone meant that something was wrong with the family I answered the call… and despite not believing that I was in any way qualified I took the chance. Despite getting horribly mixed up in the first phone screen with contact information, I made it through that. Despite feeling like I blew it by not knowing current technology in my first technical screen, I made it through. Despite throwing up all over town my all day interview went remarkably well. And despite being terrified of leaving my baby behind in Texas and moving half way back across the country and not knowing if I would let myself and my family down, here I am. I am in the Cleveland Clinic medical system. I am back near “home”. I have found a house that was waiting for me. I am settling into a job that I really enjoy.
I am where I need to be to help family understand. I am where I need to be to allow my little girl to find her wings and to allow my little boy find his feet and his wings. I’m so very proud of my babies.
Looking back… looking around… looking at everything… I realize that I am right where I am meant to be. everything is working exactly as it should. My job is to breathe… to be kind to myself and to quietly do the needful.
Nameste

I love you mom… I’m listening…

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Finding an Oasis

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So, this morning I’m sitting on some amazingly to DIE for chairs.  I want one for home.  I want several for home.  I don’t know where to get them but I want them.  They are huge round wicker “chairs”… my … Continue reading

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Guilt and Exhaustion

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I’m currently running on 6 plus weeks since my last orencia infusion.  I’m recalling how much it sucked to be eight weeks without it.  Last night it hit me hard what this time it is feeling like.  I had to … Continue reading

The Reaction

I know I’m guilty of it too, so let me start out by saying that I think this is just human nature and it doesn’t mean what it feels like it means when you are on the receiving end.

People hear (read, whatever) a comment you make about… seeing a Rheumatologist… or taking Methotrexate… or… whatever… and suddenly they get “that look” and they make “that comment”… oh, I hope you don’t have Rheumatoid Arthritis.

Of all the things I could have, I have to admit, RA wasn’t at the top of my list.  I probably would have picked something that sounded sexier, or that more people understood or could relate to, or that wouldn’t ever change the angles at which my fingers or toes pointed.  But I didn’t actually get a vote.  And frankly I don’t think I suck that bad at carrying on my life.  It could have been better, but it could have been worse.

I understand that people feel empatheticly bad that I have a forever condition that frequently hurts and that sometimes can knock the shit out of me and that might shorten my life and that (outside chance) could wind me up on disability some day.

It does suck that it hurts.  It way sucks that it makes me tired a lot.  Combine those two and it makes some days be way cranky days.

But don’t for one minute forget the fact that I do not let it get in my way.  When I’m not controlled, it has a huge impact on every day.  But I’m back to being controlled.  I’m back to taking Yoga (and starting to train for next year’s big races) and thinking about smaller races later this year.  I’m enjoying yard work (WITH my work gloves on, thank you very much).  I am back to writing for a contract.  I’m back to living my life.  Yeah, I have to be mindful and not stress too much and not work too much and to take time for myself, but I’m back to being me.

And today, I’m working from home (too many hours, I know… and I’m on pager duty so have to be “on line” till 8pm) with the windows wide open.  The birds are singing and the breeze is making my dozen or so wind chimes dance.  For a while, I worked from the front porch.

I was reminded this week that, there but for the grace of god go I by a friend I used to work with.  She is considering, very seriously planning on, applying to go on disability.  She is Sero-negative RA and has been fighting for a diagnosis for two or more years.  I understand why she would be thinking this way.  There are days that I am terrified of getting to that point.  So I fight.  I fight every day to stay ahead of my condition.  And I write, so other people know that they aren’t alone.  And I reach out to educate people, so maybe for some people, “the reaction” is more… Oh… that sucks… I’m sorry… Come on, let’s go have a cup of coffee (tea, ice tea, banana split…whatever).

it could be better.  But it could be worse.  Be gentle with yourself.  Know that there are thousands and thousands of us out here who have heard those words and we are more than willing to help you on your journey