Tag Archives: rheumatoid arthritis

Rheumy Appointment…

Posted on March 12, 2012 | 4 comments

So… today was my rheumy appointment.  I was TOTALLY not looking forward to this appointment.  The last couple hadn’t been stellar and I was worrying myself about half sick over what she might say.  I know what my next steps are and I really really didn’t want to hear them.

Got there and went right into the office (going RIGHT after lunch is a good thing).  I didn’t get weighed.  I didn’t have my BP taken or my temp or my pulse.  That was really creepy.  When Sean was there I always always always had vitals.  I don’t even know that Dr Booth cared so much, it was just what we did.  Today, nothing.  Great.  I actually wanted validation that my weight is down.

So, I kicked off my hobbit feet and my rainbow toe socks and tucked my feet under my legs to try to keep my tootsies warm.  It didn’t work.  “Yay” Raynauds… :0(

Dr Booth came in and we chatted and she poked and prodded.  Then we chatted some more.  Turns out she was anticipating my going on the IV drugs in the VERY NEAR future.  I was instantly petrified.  Tied to the doctor’s office for the rest of my life.

But… looks like I’m down to three involved joints, and those three only the eensiest bit squishy… and none of that squishy is in any way looking like it might even chance extra damage to the joints.  I am staying on Humera until at least the end of May (when we will re-evaluate and determine if Remicade or Orencia are next).  If I can hold in there at about 80% back to normal or even gain a little more ground…. I may be able to hold out for even longer on “just” the tummy shots and not have to go onto the stronger and stronger drugs.

I did get a script for Napproxin (I was coming to the end of the ones from my wrist surgery from last year) to take the edge off when I’m having an achy day.

I’m not sure if I’m looking forward to the next appointment or dreading it… but I did make it the whole day with my hobbit feet and my toe socks and nothing ached at all!  Yay!!!

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Posted in reflection, rheumatoid arthritis

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Hands

Posted on January 13, 2012 | 2 comments

 

I’ve been thinking a lot about hands.  Between looking at, and thinking about, the pictures that RA Guy put together on Show Us Your Hands on Facebook and writing about those hands and other hands here and here and thinking about my new RA nodules, I have been thinking and talking a lot about hands.

Having hands that hurt or having hands that are twisted and that don’t work quite the way they were designed to work really does affect you.  Until I was talking to a young friend of mine about hands today, and until he was talking to me about noticing how many things that we do every day with our hands, I guess I just didn’t really think about what all hands do or should do.

The one thing that hands do that is hardest to deal with when hands… well… don’t… is holding hands.  When you hands hurt, it is hart to be willing to reach out to hold someone’s hand.  It is hard, when your fingers are twisted (or overly lumpy and bumpy) to reach out and be willing to let people hold our hands, touch our hands.  It is hard to comfort or take comfort from other people if you can’t reach out and hold someone else’s hand.

Thank you Christopher for being willing to listen and for understanding.  Many people much older than you don’t and can’t.

I know what it is like to have someone see my hands, with their bumps and their scars, and explain in great detail how my hands give them nightmares.  I have a couple little bumps and those come and go and aren’t ALL that obvious.  The scars have been there, to one degree or another for…well… 14 years.  Since I broke it and hand it fixed and had it rebroken and had it rebroken and carved up with cadaver bone put in (the dead guy in my arm story was really cool) and finally rebroken and carved up and fixed right.  I’ve never been PROUD of my scars (and the butt head guy who told me at least when I tried to do it I did it right and I was lucky they saved my life when I committed the sin of attempting suicide… I paid someone a LOT of money to create that scar, thank you very much).  I have rarely been ashamed of my hands and my scars.  Until she pointed out that I give her nightmares.

But hands really are important.  And when they hurt it can be inconvenient.  I’m very grateful that mine are not to the point where it hurts to hold hands.

My hand (not sure if my mom quite realizes the significance of this picture or not) finally works.  Or rather, my wrist finally works, the way it did before it was broken 14 years ago.  That is amazing.  I can hold my hand, palm up, without bending anything at an unnatural angle… I can hold BOTH hands beside each other and they are the same!!!

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Posted in rheumatoid arthritis, Writing

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Listening To The Rain

Posted on January 9, 2012 | 3 comments

Was up a lot last night.  A couple storms blew through and it got way loud and lots of lightning.  Poor dog is never rattled by storms and this one rattled her.  Now, five hours later, the rain has quieted to just an easy slow rain on the window.

I’m all curled up in a blanket and enjoying the rare sound.  It has been so infrequent that we have had rain this past year that despite the achies that this rain seems to have brought with it, I’m loving the sound.  I even hope that, eventually, we might get grass back rather than gray-brown stubble and a few intrepid weeds.  So far we have left the weeds because at least they are green and soft.

Hands are complaining this morning.  I know it is from the rain, and from the extra typing yesterday.  Ah well, it is what it is and it will be what it will be.  I will toss in my jar of Tiger Balm and my fingerless gloves when I head out to Jury Duty this morning. My commute this morning is ten miles north rather than thirty miles south.  It will be a short one and I get to see what Jury Duty here is like.  I’ not sure what the deal is, I looked at the county web site and it said the next jury trial is January 24.  I guess today is part of picking a jury for one of the upcoming trials?   I have my iPad all charged up so I can take notes on my fellow captives and so I can read.

I have a neat sore spot in the middle of the top of my left foot.  Not sure what it is but it has been there for a few days.  I’m trusting that I will make my rheumy appointment on Wednesday to find out.  I have a place just at my ankle of my right foot that feels like I could crack it if I tried really hard.  Except that I tried really hard a couple times and it brought tears to my eyes, it hurt so bad.  Yeah.  Pretty sure I will try to let it work itself out.

I keep thinking I need to haul my butt out of my nice warm bed and head to the kitchen to fetch coffee.  I get to take it a bit on the easy side this morning, I don’t have to be to the court house till EIGHT THIRTY!!!   I really should find something suitable to wear, though.  Not sure what one wears to Jury Duty today… should I wear my Mickey Ears?  Or… my unicorn head?  … ah… maybe jeans and a sweater (I am always chilly) and grab my hoody…

Happy Monday all.

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Posted in Journalling, rheumatoid arthritis, weather

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What RA is like

Posted on January 2, 2012

This was posted in a group I’m on on facebook.  I went hunting and found it here as well (and found out that it can be shared with attribution)   What RA Is Like: A Letter For Family and Friends … Continue reading →

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In The Midst of the Holidays

Posted on December 22, 2011 | Leave a comment

The holiday season is upon us (ALL the holidays… Hannachua, Christmas, KWanza, New Years, Winter Solstice… lots of them) and RA doesn’t discriminate based on what hoiday you celebrate.  Probably not an incredibly popular centiment, but you know what… I’m so totally passed being worried about people getting bent with me.
I sit and think about all of the Christmas’s past and all of the Type A memories I tried to make for my kids.  For years I made batches of cookies that no one ate but that I made becuase that is what I grew up with… making cookies.  I hustled and bustled and busted my behind.  And I made memories.  But the memories I made didn’t actually corespond with what I thought I was making.  The memories… Sitting in the chairs of the laser light show and watching the “jello” dance across the ceiling.  Putting up the Christmas tree and letting the kids decorate the bottom.  Dominick the Donkey and I Want a Hippopotomos for Christmas and Santa Baby bringing smiles because of their connotation.  And going to see the Christmas Lights regardless of where we are.  You don’t necessarily have to “do” to create the memories, you have to be.
Now that I’m celbrating with the addition of RA, I rethink what I do and what I plan to do so I don’t turn Ho Ho Ho into HoHumBug.
I know i can’t “do” traditional eggnog or a hot toddy or even spiced wine.  Meds and alcohol don’t really go together well.  It’s not that I have done any of this anyway, I know I’m a cheap drunk and it isn’t good for me to drink on a good day.  But I also know that a lot of people who are on similar meds do or have.  There are ways to celebrate in less alcohol rich ways.  Apple cider is wonderful, spiced grape juice is an awful lot like spiced wine and is <ghasp> healthy.  Look for the little things.  Look for ways that you can find your own bright spots.  Music sometimes help, too.  All things considered, finding the bright spots are going to be the best treat you can give yourself.
I know that it is especially hard, particularly when many of our families themselves don’t “get it”, but try to set expectations realistically.  You know how much you “need” to get done, be it wrapping, or baking or decorating or cards or whatever.  Be realistic with yourself and with everyone else. And don’t discount hiring out some of the things you feel you have to do.  Buy your cookies from a bakery or from some orgaization having fund raiser bake sale.  Have your gifts wrapped the same way (lots of stores hae charities who come in and do wrapping for a donation).  This has the side benefit of having a bunch of different wrapping paper that no one has seen before (hint hint, wink wink).  There is a big trade off between time(stress… effort) and money.  Even today when money is more tight than ever, sometimes spending a few dollars that you might be able to write off as donation to charity to keep from overtaxing yourself is the better option.  Save your engergy and effort for things that you really enjoy or that bring you happiness.
Find the easiest way to do whatever it is that you are goin to do.  I know this sounds obvious, but it is sanity.  ANd not just during the season, all the time.  A lot of getting by is just learning new ways of doing things.
Ask for help.  When you can’t figure out a way to do something without hurting, ask for help.  This was the biggest deal for me.  I have always been the one to try hard to do things for everyone else.  I’m not sure if that is a girl thing, or a mommy thing, or what.  It is what it is.
Keep in mind, though, that there are also tradeoffs for cutting back, especially if you cut back too far.  When you cut back (or out) on things that really matter to you, or that really matter to those who are important to you, sometimes th cost is your depression or even more stress than actually going through with whatever it is that you cut back on.  Those tradeoffs aren’t worth it.  Sometimes, in those cases, it is better to cut something else out or at least cut back on and find a way to deal with the added stress that the events or the tasks might cause.
So… I guess it all boils down to… do what makes you happy and enjoy the holidays!!!

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Rheumy Appointment… Thoughts to contemplate

Posted on November 18, 2011

This week, earlier, was my Rheumy appointment. It was not something I was looking forward to.  I knew my toes (turns out my ankels too) were still pissed off.  I was right. There is something to be said for being … Continue reading →

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On Getting a Rheumatologist

Posted on November 8, 2011 | 2 comments

I’ve been reading some posts on my RA discussion groups 0n facebook about people trying to decide if they should get a rheumatologist or stick with ‘just’ their regular doctor.  I know that it is a personal decision coupled with the decision your insurance company tends to… um… encourage you to do.

I was lucky.  My PCP encouraged me to go to a good Rheumy.  I have a hunch, now, that she just really didn’t want to deal with me and the obvious problems that putting off going to the doctor about my symptoms for SO long was causing.  But I know that it was also the best thing she could do for me.  Dr Holly suggested a couple doctors, one that they tend to try to send people to and another one if the suggested one didn’t suit… I called Dr Booth and I’m so glad I did.

Having a Rheumy on your team gives you someone who really understands your condition, they understand what your body is going through and they have the background to tell you that this doesn’t work or that might help or don’t listen to the people who preach something else.

She talks to me at every appointment about what she sees in me, what I’ve been going through, what I’ve been up to, what the meds are doing to my body.  She tells me about the up and coming stuff in the ‘industry’ and what new marvelous drugs are being tested.  I don’t qualify for a clinical trial.  I don’t have enough joints involved.  But it is good to have that information.

The rheumy has the inside scoop on support groups and on exercises that you should maybe avoid given your current condition.

and they can answer all of the questions that you run into… questions that your PCP might know, or might have to research and get back to you on…

things like…. methotrexate if taken the way they used to prescribe it (a bolus dose rather than ramping up) you get horrible diarrhea … explosively… and that isn’t great and sometimes it is better to take things prudently rather than the way it has always been.
things like, be gentle with yourself, you will hurt, you will be tired, you will have horrible days and you will have less horrible days.  do what you have to do to get life done.  Slow down and love your good days, adapt tools when you can’t love your days, and don’t be afraid to ask for help.

So… if you have the choice… I would say… get a rheumy, even if only for a while.  They are vastly knowledgeable about what your body is going through and can be one of your best tools in the world.

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Rain… YAY… Oy Vei

Posted on October 9, 2011

Woke up this morning to the wonderful music of rain on the side of the house.  It had been so long (months) since we had any really appreciable rain and we have needed it so desperately.  We currently are looking … Continue reading →

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Fashionista…

Posted on September 30, 2011

For anyone who has ever met me… or frankly seen me anywhere at all… it is obvious that I am not a fashionista.  I could honestly give a rat’s behind what people think of how I look.  I can’t find … Continue reading →

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Junkie

Posted on September 26, 2011 | 1 comment

I am a junkie
I realize
as I draw the methotrexate into the syringe.
as fear grips my heart at the idea that
I won’t be able to get my drugs
as I push the air and ensuing drop
of the Etanercept
off the end of the needle

I am a junkie
I don’t get high
from my drugs of “choice”
I get nauseous
A headache
itchy and bruised
balding
and every time hopeful
That this time my fix
will chase away the swelly pain.

I am a junkie
An RA Junkie
hear my song
I live
from injection to injection
from week to week
The hope of “remission”
an elusive dream

 

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