My Hands

Posted on April 13, 2012 | Leave a comment

My Hands
hold my children’s’ hands
when they are sick
when they are fearful
when they need to be comforted

My hands
write about
my condition
my children’s conditions
my ability to bring light and hope

My hands
crochet chemo hats
make brownies and cookies
send messages to friends
fighting their own fights with their own hands/heads/hearts
bring awareness to RA

My hands
are proud hands
not ashamed
of lumps and bumps
or even of the twists and turns that don’t yet exist
and not afraid to be held up to be seen
to be shaken (gently please)
to be held

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A little catching up to do… but I’ll get there

Posted on April 2, 2012 | Leave a comment

Hey everyone – I just wanted to tell you about a new activity I’ll be doing this April. The Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you’ll join me in writing every day about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here:http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around. Looking forward to writing with you!

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Long Week

Posted on March 29, 2012

So… here we are again fair reader… (yeah yeah… it is a weird morning… give me a break)… It has been a long week… and my body is reminding me that it has been a long week. This week… Adam … Continue reading →

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Does a Day Go BY

Posted on March 18, 2012

This past week I had my visit with my Rheumy.  She poked and prodded (physically and metaphorically) and she got me thinking. For starters, I’m thinking that 85% back to ‘normal’ might be good enough if it means that the … Continue reading →

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Rockin my Buff

Posted on March 16, 2012

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Okay, so… like I said, I like my Buff.  And I have been wearing it to work.  It has met with some very mixed reviews. I have heard that some people like it.  That seems to be what passes for … Continue reading →

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Immunocompromised

Posted on March 15, 2012

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Wikipedia suggests that… A person who has an immunodeficiency of any kind is said to be immunocompromised. But… what exactly does that mean? When you have RA (or any of a family of autoimmune ‘diseases’) your immune system has totally … Continue reading →

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Buff Headwear

Posted on March 13, 2012 | Leave a comment

So… I’ve decided to embrace the fact that I’m going to continue to be on methotrexate for the foreseeable future.  I don’t think buying a wig is really me.  For starters, while I do some how fundamentally “care” about my hair and the fact that I can pull it all back, now, in one of those baby clips, I really don’t care that much.  It is what it is.

I found this at REI.  We went during their recent ‘yard sale’ (where we found squirrel girl an awesome pair of Vibrams Hairless Hobbit Feet) and I saw this.  It’s purple, so I think it is awesome anyway… but it is amazingly versatile and neat.

I may not have fashion sense, but I do think this will make a statement.

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Posted in hair, medicine, 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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Faith, Hope, and Love (and being crazy)

Posted on March 12, 2012

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I’ve been thinking an awful lot about things that people say and that people do.  I’m not sure if I’m going to get up on my soap box yet or not… or if this is just going to be a … Continue reading →

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Posted on March 11, 2012 | Leave a comment

In general, it has been (in case you didn’t read about it) a kind of crappy feeling several days.  I’ve been inordinately down on myself.  I have felt very insignificant and to a great extent like a looser.  I’m still feeling kind of disgusted because even among RA people I’m “sick” enough to qualify as technically part of the group, but I realize that I don’t reach nearly enough people to count as someone who makes a difference and I’m not sick ENOUGH to be held up as a poster child.  It kind of makes me feel like the fact that I can actually finish a half marathon and dream of walking a Disney half some day means that I am too healthy to be sick and too sick to be healthy.  Sigh… so… I will figure out how to deal with all of that.

The rest of the poor me crap that has been plaguing me, I figure I’m pretty much past.  I went for a walk.  I took a mess of pictures.  I enjoyed a beautiful day.

I went out and played.  I played in the rain and in the after rain.  I got soaked multiple times, froze my tootsies and got some really interesting pictures.  It kept my mind occupied and let me get out and get some much needed exercise and de-stress.

It is still promising to be a long week.  Tomorrow I have my rheumy appointment.  I’m kind of looking forward to it so I can find out for sure if the Humera is working well enough or if I’m going to have to add some other uber industrial strength meds.  I’m feeling some better.  I still ache.  But… I guess that is a given.

Here is to looking forward to a better tomorrow…

Tuesday, my baby girl gets injected with radioactive die and will be stuck laying on an xray table for two hours for her HIDA scan.  I’m worried.  I don’t like that she is getting so irradiated.  But she is still puking and that worries me even more than the radiation.  so… I will worry and suck it up.

I am still not completely back to Mary Sunshine.  I am still worried about friends and family and what is being faced tomorrow and over the next couple weeks.  But it is starting to feel a little bit like butterflies after the rain.  There are still weeds.  But at least the weeds are blooming and there are butterflies dancing and playing in the warm afternoon sun.

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