Hello my friends ~
as I sit here in my rocking chair
as usual...
I am supposed to feel hope.
But I don't.
I should feel excited ~
but I'm not.
It would be great if I were grateful
but I am pissed off.
What is up with me?
Fear.
The four letter word.
Sure I write about thriving
living life with everything you have.
But today...I am afraid.
Everyone around me says
"it's only an infusion"
but they take Advil.
I take many pills a day
plus inject live proteins.
Sure, I should be honored that researchers
are trying to cure my disease...
but my RA is eating me alive.
Bone by bone
ligament by ligament.
It.must.be.stopped!
Nothing has worked so far.
Now I can't even use my hands for yoga.
Now I must do Chair yoga -
I should be grateful I can modify again...
but not today.
Not now.
Gotta get ready to go to Boston
Try my fourth drug ...
the infusion...
and be happy about it ~
everyone else is.
I just want to get out of this eff'ing
Rocking chair
and join my family.
Please work, Lord
Oh, God, let this one work.
Healing hugs,
Alicia
6 comments:
[[gentle hugs]]
My heart goes out to you right now. I wish I could be there for you face to face. Fear is a tough one but a real one. And it is real for people like us for whom the drugs do not work...yet. All I can hope for you is that this next drug will work for you. And that you will be able to fight back this monster and that for at least a period of time you will have the peace you so rightly deserve. You might be afraid, I get angry. But neither is a good emotion. Yes, they are real. Yes, these emotions are all apart of this journey but they are not the best of the emotions out there. I am glad though that I did not hear you say...I have given up hope. Please don't ever give up hope. That is all that I ask. And do know that I am wishing all the wishes I can muster that you will find the magic bullet for your monster.
Glad you can write about it....I am ont even close!!!! Good luck!!!!
Anne
Thank you my friends. I write for you. For us. I wasn't going to publish this one - it was too raw. My partner said..."Babe, too many people will identify with your feelings and you express what they are going through...you have to publish it." So I did. RAW.
I made it through the infusion. Met a couple of nice gals going through infusions too. One gal with Orencia - had 5 replacement surgeries - fingers, shoulders, knees - beautiful woman. Has had RA for 40+ years. Another woman had Remicaid - worked the day after her 1st infusion. Had RA 1 year like me. I was told it will take about 12 -14 weeks for me to know if this one works. :) Keep writing to us. hugs ~ alicia
HI doll, I hope that today was fairly easy for you and that you are now home, resting comfortably with your family. My prayers for your recovery never end. xoxoxo
You know, reflecting .... I wonder if I had a feeling about my mom. Who knows, but I don't usually get that negative and scared with my meds...and what happened was - I got hope ... and on the way home I called my ma and said "Ma - I have the right medicine...I just know it. We will be able to spend so much more time together." She passed away 3 days later. Interesting when you look back and see your writing....I wonder. I'll never know. xoxo
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