Category Archives: rheumatoid arthritis

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!

Gallery

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

Mood Swings

IMG_6105So, I’ve been sitting in the growing gloom of morning as the storms creep in feeling very alone and very cut off from everything and everyone in the world.    Given that my dog is at my feet and everyone I live with are where they usually are (squirrel girl asleep on the dining room floor and bear asleep on the basement couch) the feeling is in no way based in reality.

The rain has interrupted the satellite signal so the only sound is the rain on the roof and the windows and the patio and that lends itself to the feeling.

I’ve discovered when I’m aching more the moods are far worse than they are when I’m not.  I am way more short tempered and moody (crying to anger to crying to feeling contrite) and physically exhausted when the pain and stiffness creep up.

It’s a lot like the the storm, the thunder and lighting and rain… the anger, frustration, anger and tears… they come in, sometimes blow through rather quickly, sometimes stay for days.  Eventually it blows through.

And I feel so guilty because of it.  I know it hurts people’s feelings.  I know the way that hurts, too.

I’m looking so much forward to my twice put off infusion on Wednesday to blow out the cobwebs, the aches, and the moodiness.

Evolution

IMG_0068Now now now, calm down.  It got your attention didn’t it?

This is the evolution of me.  I’ve been thinking a lot about it this week.

I had a wonderful week off (exhausting, but good) with my son visiting in from Texas.  He’s been quiet this week and I miss him.  A mom worries even when her babies aren’t babies and it was so nice to talk to him just a week ago today.

Earlier this week, when I pulled into the parking lot for work, there was one of the massive ore freighters coming in the Cuyahoga river.  The only sound she made as she eased through the water was a very low hum.  She was graceful and huge and it made me smile.  I remember the freighters in Duluth.  I remember the pellet trains (and blowing up dirt) in Minnesota.  I remember the parting words that someone gave me as I left the plant (and the company) in Minnesota.

He told me that some day I would look back and think what if.  And during my walks to work, up the hill from parking… this week (15 years later) I really started to think about the what ifs.

I know what he meant.  He meant with regret.  And I have regrets in my life.  However, I don’t look back on the last 15 years and the adventures I’ve had or that I’m having, necessarily, with regret.

I’m sitting at a desk I adore in a house I finally feel at home in listening to the sounds of everything and nothing stream through the open windows.  I’ve tried to drink from my empty coffee cup about four times now.  I sat on the porch a while and watched the sun creep up through the trees.  I have a job I enjoy with people who I’m finally a team with.

If I hadn’t left US Steel, I would never have had the opportunity to learn so many of the things I’ve learned.  I would not have made my way to Texas and met the people who I met (and some of whom I miss) there.  I would not have seen what I’ve seen and I would never ever have been where I am right now.

Am I wear I pictured myself 15 years ago?  Nope.  Not even close.  My goals have changed.  My drive has changed.  My outlook has changed.  I’ve grown (in many ways) and I’ve stretched my wings far further than even I ever dreamed possible.   My Brazilian business visa is in process and I’m starting to find my voice and my strengths and weaknesses and learn my way navigating my new(ish) job.

I have evolved.

Do I miss my kid?  Yeah, an awful lot some days.  Do I completely understand why he is in Texas and I’m in Ohio?  Yep, completely.  I wish Ohio and Texas were closer.  I wish I could make life easier for both of my babies and that neither of them would have to be going through some of the stuff they go through.  And I sit and drink my coffee and think about where I am and what I do and the lives that have touched mine and I smile (and try again to drink from my empty coffee cup… there has to be a metaphor there somewhere).

This weekend I’m tired.  I’m tired, breathing sucks this morning, and I ache and I feel every bit of the two weeks late on my orencia infusion… and I’m SO looking forward to Wednesday when I can get my next obscenely expensive fix.

Has it been a week of thinking about what ifs?  Yep.  It sure has.  But my Blue Jay is back and I’ve scared the piggy little squirrel out of my feeder again this morning.  And I hear the hickory nuts thudding to the ground where the stupid squirrels are either harvesting them or knocking them down.

I am exactly where I am supposed to be today.

And just for shits and giggles, I googled the guy who told me I would look back and think what if.  The meteoric rise to power that he foresaw in his own future I guess has come to pass.  He’s in slovokia now.  I wonder if his ex-wife and his cute kids and dog are happy back in their home town without him.  He seems (if the company press releases are anything to go by) to have become a smashing success.  And I guess I do wonder where I would be had I not left my first grown up job 15 years ago.  And I’m PRETTY sure I don’t think I would have liked where I would have been.

Gallery

The Value in Nothing

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It’s late again (for me).  Later than it should be.  Later than it could be.  And this morning I just don’t care.  I am sitting on the front porch.  My deer friend Eloise (I’ve named her Eloise… the one that … Continue reading

Good Morning

 


Good Morning

“Whether you think you can, or you think you can’t–you’re right.”


― Henry Ford

One of my favorite quotes.  Because it is quite often very true.  I know that I will never be able to run fast enough down the hill to actually be able to walk on top of the water in Wolf Creek.  I know that I will never be able to run fast enough to be able to jump off of the cellar porch and take flight.  But I know that there are many many things that I can do that I only have to believe that I can to do them.

Some days the doing is harder than the believing but it is possible.

This morning I find myself sitting on my porch listening to the world around me.  The squirrels are playing in the trees, their nails scratching madly against the bark of the oak tree in the neighbor’s yard.  My water fountain gurgles quietly at the edge of the porch.  The machines at the new Giant Eagle store just yards away growl and beep.  Dozens of kinds of birds lend their voices to the morning.  And here Peanut and I sit taking it all in.

I finished the piece I was working on for Health Monitor on hints and tips for getting through every day with RA.  I’ve been working on my latest geek book.

My back hurts.  My hands hurt.  And I realize that I make the choice to try to be in a good mood or I make the choice to not be in a good mood.  There is an edge to my mood… and I know that.  And the edge makes itself painfully known when I get interrupted every sixteen words because the people that sleep till noon on Tuesdays get up at six on Saturday so we can spend the WHOLE day chatting despite the fact that I get quizzed on my progress on my book about once a week.  This morning, the edge is there.  But I try to enjoy the morning any way.  I have to.

whether I think I can or I think I can’t I’m probably right.

Too Many Friends

Hello!

Now, judging by the title, it seems like this might be a little kvetching.  It’s not. I am a firm believer that you can never have too many friends.  I know I’m “that weird lady” and I gratefully accept the title, but I believe that we are all connected.  We are all the same.  Some have more, some have less, we all have struggles.  We all cry.

I try desperately hard to not let people who are painfully mean (and by painfully, it can get to where their negative energy can physically hurt if you stress too much on it… it’s the stress, not them particularly I think… but hurt is hurt).  And I let them anyway.  Sometimes it is unavoidable… you have to deal with them.  Sometimes I get caught in my Pollyanna ideals and try to help… to change… and it doesn’t work… but I try. It’s also why I don’t “hang out” in many of the RA groups on Facebook.  Debbie Downer isn’t me and it isn’t something I deal well with.  Yes it hurts… BELIEVE me I know it hurts.  But… there are people who find their joy in DWELLING in the hurt… expounding and bitching endlessly about the hurt… I hurt. Some days I hurt an 86.  And The sun is going to come up and I have to get through today.  I can smile (okay, it LOOKS like a smile if you grit your teeth the right way) or I can bitch.  Bitching pisses everyone off and adds to the stress.  Stress sucks.

Too often I find out that my friends for other reasons (people I’ve worked with… friends for other reason on Facebook… complete strangers) are struggling with trying to get a diagnosis for the pain… or have gotten the diagnosis for the pain and are struggling with the new reality.  It weighs on my heart that so many people are finding out that they are now dealing with this reality.

It’s funny.  The day I found out about my diagnosis I sat at my desk at work and cried and cried and cried.  I thought of the hands… the ones I remember from my childhood… the ones that terrified me then and still do now.

Don’t google them and look.  It’s not good.  It’s scary.  I know it is reality still.  I’ve seen them when I’m out and about.  But it doesn’t help to dwell.

I don’t want other people to sit at their desks and cry and cry and cry.  I know they will.  Even if you DESPERATELY want to know why you hurt like there is ground glass in your body and every movement grates it into the nerves… even if you NEED to know so you can start to fight back… still… hearing the words is like getting kicked in the knees.

I’m glad I went through my own steps of dealing with it so I can help.  I can be the go to guy who has lived.  Who has cried hot tears because some times you just have to push through the pain because you have to and that is the only reason you have.  But I can listen.  And I can be that shoulder, real or virtual, who understands…

Too many of my friends are hearing the same words I heard.  And it sucks.  And I hope that, maybe, I can help.

This Week at the Rheumy

Saturday morning… Coffee this morning that is twice as much hot milk as coffee.  I realize (as I sit in the quiet of my special space watching light steal the darkness from the sky) that everywhere I go changes me.  Brings new realizations and experiences… and I work to make them mine.  Ecuadorian coffee… Vietnamese coffee… Espresso… tea brewed lose in my infuser cup…

It is a good morning.  It was a good week.

I had to put my infusion off for several days, so it was starting to be an ouchy week… but not too bad.

Because my finger was being very problematic for almost the entire month off and on, the Dr wanted to see me.  Turns out she isn’t actually in clinic on the day I was there, but she wanted to be paged, and she was, and by the time I was done with my adventure (Nurse, PA, Infusionists) she was there.  She’s reasonably happy with my progress.  She suggested I go back on prednisone for 2 weeks at 5mg a day.  I don’t think I will.   It is progressing and is tolerable.  I think I’m okay.  But it was a good feeling to have her make a special trip into clinic to check it out and make sure I’m okay.  And I found out that she was concerned enough about it to be looking up possible orencia reactions to see if maybe that was the issue.  I had to smile at that.  I was trying to look up the same things.

My infusion went off without a hitch.  I got juice and crackers… always a yummy treat… and was on my way after only 90 minutes (both appointments, end to end)… just long enough to cost $6 parking… yay me.

And I’ve managed to try to reset my appointments to first thing in the morning.  Not as early as Dr Booth, but not bad.  It makes my parking a little more creative, but if it isn’t storming I don’t mind parking on the roof.

So here I am.  Bright and early on a Saturday morning.  My furniture finally came yesterday (the kitchen table and my desk that we have been waiting for 12 weeks to see).  It showed up yesterday morning and the nicest Amish guy and his driver unloaded it and set it up.  You can still smell the faint traces of wood finish on them.  And today I make a concerted effort to try to get the office cleaned back up and organized and tomorrow, maybe, I can get back to trying to finish unpacking in the bedroom.

And Monday, my little girl and I (my daughter, the one who said she would never ever ever do Yoga) start Gentle Yoga at the Rec Center.  I’m looking forward to getting back to Yoga.  MAYBE I will even start doing the 45 and over yoga a second day a week!

Love and Light

Cha-Cha-Changes

So, I find myself sitting, early this Friday morning listening to Change of Heart  “at work” in my office at home at 5:30 am getting more done by 9 am (blah blah blah).  There is the sound of claws on laminate flooring as the dog chases, catches, and chews on the cat (I’m glad they love each other).  The window is open, a hawk cries just out of sight.  An owl alerts the world that it is morning.

I keep thinking about changes.  It’s been a third of a year now full of changes.

Not all of the changes have been easy.  I miss my little boy desperately.  Skype helps a lot and I bought a year’s paid subscription so I can call anywhere, even land lines, without having to worry about it.  Voxer helps too.  I still miss him.  I know he has his wings and that this is as it should be.  But still…

It was very hard leaving “home” to go on vacation (and to do the half) in Florida and getting on one plane while my family got on another plane and I never went back to Texas to say good-bye.  Watching them leave (their plane was an hour before mine, and I wasn’t allowed to check in until they were nearly ready to take off) through the airport while I sat waiting to check in will remain a very fresh and raw memory for me.

Not all of the changes were hard.

I love my new house.  It feels like a home in a way that the old house never quite did.  Maybe because here I have a room of my own that is all my own that I love.  Outside my window is a bird feeder that birds actually come to.  I have the window open this morning listening to the bird song from wherever they are.  There is a chilly breeze coming in and it’s wonderful.

I have a garden and flower beds that won’t require hundreds of dollars of water to keep looking like flower beds, and I’m making them my own.  I’ve adopted plants from the farm where I grew up.  I’ve adopted plants from the yard of the vacant house next door.  I’ve bought plants that I love (yay pussy willow bush), herbs and plants that hearken back to my childhood and my great grandmother’s house.  I still want a rose bush and a lilac bush.

My job is sometimes hectic and sometimes, frustrating sometimes, incredibly educational sometimes, but always something I enjoy doing and something I look forward to doing almost every day.

Oh come on, NO one loves their job every day.  Some days you just feel like shit and don’t want to deal with breathing or going to the bathroom let alone facing people or stress.  I’m glad that the days that I want to hide under the front porch are way fewer than the days when I actually enjoy going to work.

And looking at where I am now, I have to think that the best change is that my boss believes that I am capable now.  I thought I was going to work where I was forever because it was decent insurance and it was good pay.  It didn’t really matter that I was ridiculed all the time or that my boss outright told me that he didn’t think that I was capable of being a productive member of HIS team… or that I was deliberately set up to not possibly be able to reach the goals set.  Now I’m part of THE team and I am a productive member of the team.  And I realize that I can.  And knowing that I can, again, is one of the biggest changes.

I don’t always feel marvelous.  I am getting back to caring how I feel.  And I am starting to find peace in what I am and what I’m doing.  And the absolute best part is, the change in the weather seems to be agreeing with my RA.

 

Uncertainty

Let me start by saying that I hate paying $6 every time I have to go for an Orencia infusion. I know it is a little thing, but parking, in general, irritates me a lot. I also hate knowing that they bill almost 10,000 a month for my office call, chair rental, infusion center rental, soda crackers and cranberry juice. I’m REALLY counting on what the insurance company saying being true… that after I hit $3500 out of pocket, I won’t have to pay any more the rest of the year. Except for prescriptions, those come out of a different company and a different bucket (and SO don’t get me started there).
I don’t like knowing that the Intercontinental hotel is DIRECTLY attached to my clinic. That tells me that it is probably billing way more than is absolutely necessary.
All that said, I messaged my Dr through the online thing, and she called me back to talk. She asked that I call her, asked that I just stop in her office, asked that I call her to follow up and asked again today that I call her on Monday. This is a doctor that has crappy ratings in the rate your doctor thingys.
The place is expensive, but… She listens… I miss Dr Booth incredibly. I love her sense of humor and the fact that she always remembers everything about everyone in my family. But Dr Gota cares. She might not care the way other doctors show it… or the way some patients think she should, but she’s very matter of fact and to the point and she follows up. She uses the computer for her records and takes copious notes, but when it comes time to be poking and prodding, she does that just fine.
I don’t always like the look on her face. I certainly don’t always like being sent for x-rays and blood work. But we have ruled out that anything is broken and we know that I waited long enough for my diagnosis that I already have significant wearing in the joints. But we know. And knowing is half the battle.
I’m looking at being able, in the next couple months, to change to a more local (and a not pay to park) rheumy. But I’m not entirely sure that’s what I want. I don’t like the cost. I don’t like being slapped in the face with some of the reasons why the cost is what it is. But… I like her. I think I want to stay anyway.
The decisions that I know I have to make because I have to be comfortable with my care because it is for a long long time, but I have to think, too, about all of the cost… what to do, what to do…
That is part of my uncertainty today.