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
Have you ever heard this? From family members? From doctors? From well-meaning coworkers? It doesn’t necessarily have to be about RA (or autoimmune disorders in general) but can really be about just about anything. In my case it is about … Continue reading
Okay, okay, so I don’t do this so much… talk about places I’ve been hanging out perusing… but I’m sitting here in a less than toasty hotel room reading the “free” issue of the newest UK Writing magazine I found on … Continue reading
So… Here I sit… blog in hand… thinking. Thinking about the messages that we hear from the time that we are young and what those messages teach us. Last night I talked to my Dassie Girl a long time about … Continue reading
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!!!
You know… I’m finally coming to the place in my head and in my heart where I understand that I need to just stop fighting my own reality and give in and do something about it. I’ve spent a night … Continue reading
I am a junkie
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
itchy and bruised
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
from injection to injection
from week to week
The hope of “remission”
an elusive dream
Do you see me
Really see me
The me I am
Not just the me I pretend to be
You see the clown
The In Your Face
The ham they voted me in high school
The colorful flag waving goof
I hide the anger
The pain, the fear
I hide it from the world
Beneath a thin veneer.
The hurt in my eyes
in my soul
In my heart
is there for the world to see
but the clown is much easier
less you have to care
Do you see me
Do you take the time
To really look
And see what you are afraid to see.
I’m sitting on the bedroom floor. Tv turned way quiet. Blankets and my trusty afghan piled around me. I’ll bet she never dreamed those years ago when she crocheted it all together how much use it would get… How much … Continue reading
Morning Creeps up the sky
Day comes warmly
into the world
Chasing night clouds