A New Hope

It could happen tomorrow, technically today.  In a couple days it will be four weeks since my last injection.  They are calling this the "wash-out" period.  All I know is that I cannot wait for some relief.  I could be getting my first infusion today.  I've been told that I may feel immediate relief.  I cannot imagine.

Yesterday, I used a couple sprays of hairspray, the pump kind.  A couple.  My joints in my index finger felt as if I had jammed them into a wall.  Actually, it kinda reminded me of the times I caught a softball wrong and jammed my finger then.  I removed a couple of ornaments from our Christmas tree and my neck and shoulders are reminding me of those movements tonigh.  These things don't happen with healthy joints.

I am tired, exhausted.  Not as much as the week of Christmas and New Years, but more than I would like to be.  Thankfully, the weakness hasn't settled in and I am hoping that won't be the case before new treatment begins.  None of this stops me from doing all I have to do in a day.  There really isn't a choice.

These past few weeks have made it clear that the Humira injections I had been enduring over the past year, weren't doing all they could could.  I just didn't know enough to, know.  I wasn't sure how I was supposed to feel.  It was doing something, but not enough.  I am more in control this time.  I have a new rheumatologist with whom, I think, there is already a better rapport with.  My second visit, he brought in another rheum from the practise.  I was sold.  This is where I need to be.  And then they said the right words for me: "and if this doesn't work, we are going to try that.  If that doesn't then this..."  They have a freaking plan!  OMG!  A plan.  In the end, if nothing works, I know I will still be better with the plan.  Something to look forward to an be hopeful for.  Nobody likes to wander down a path unprepared.  As my baby boy would say, "Dis is my spot!".  Game on!

This is a new year with new opportunities.  I cannot wait to do the simple things in life that most of us take for granted.  Who knew tapping my foot to the music could cause so much pain?  Regardless, I am very thankful for the small steps forward.  A year ago, we were all ecstatic that I could dress to go to the grocery store.  Even if I only made it there for 10 minutes. That was progress.  Now I am able to drive myself, park, shop and load the car.  That is the difference a diagnosis makes.  So very thankful.

To my friends out there who are also searching for relief and trying to take this one day at a time...and not think about what lies ahead, I cannot stress enough how together we all are in this.  Never alone, even though many times, it feel as though we are.

One Size Does Not Fit All

While on the phone with the pharmacy representative in charge of filling my prescription for Humira, she asked me one of the standard questions they always ask.  "On a scale of 0 to 10, 0 being none at all and 10 being the worst, how would you rate your pain?".  I freaking hate this question.  I never know how to answer.  I hurt all the time.  So zero is not an option.  Five seems like I am just not happy and anything higher, sounds like I am complaining or a hypochondriac.  I usually say 6 and hope it's just a formality because I am not sure what they or we are supposed to base it on. My pain scale would be radically different.  Questions, not numbers.

What is the base for your pain?
  As a general rule, there is a burning that is present or an ache, somewhere, almost always. That is what "1" would be.  The base, if you will.

What is your best time?
I would need someone with computer animation talent and a stopwatch to help with the next.  How slow am I moving or getting in and out of a chair?

Do you need a GPS with Traffic Alert to navigate your own home?
Can I maneuver between a child and a boot on the floor with ease (nope)?  Can you pass me by in the hallway without setting me off balance because I am so stiff with pain (again, nope)?

How are you carrying on conversations?
I would want to be asked how often I am silent.  That is a HUGE indicator.  Sometimes, the pain is so bad, I can no longer distract myself from it.  I can sit in a room full of people I know very well and have nothing to say at all.  That happened this Christmas.  I sat at the table and the pain coursing through my body was so intense, it was all I could do not to put my head on the table, right there, and cry.  I felt like an awful hostess. I thought for sure that they could see that I wasn't listening to them at all. 

Are you a glutton for punishment?
Yes.  I would rather stand (OK, lean) at the kitchen sink doing dishes and then move on to another task nobody in their right mind would do with the amount of pain I am feeling than sit and "relax".  Because, contrary to what you may think, for me, sitting in pain is worse than moving in it.  Notice I said, in it and not through it.  Through it would indicate that the pain passes.  It has not.  I need to be distracted.  My feet are bad.  Real bad.  But the counter pressure from standing on them is better than the stabbing, throbbing, indescribable pain when I finally sit.

Where are your emotions?
All over the freaking place.  I don't know what to say.  To live with this type of pain every moment, every day wears on you.  It is exhausting.  In. Every. Sense. Of. The. Word.  To try and maintain a "normal" lifestyle is...exhausting.  To pretend that the little things don't get to you; especially the pieces of yourself you feel are being chipped away...every day.

Can you complete a sentence...with all the words?
Nope.  Too much pain on the brain.  Processing is a problem. 

How is your tolerance for noise?
This always depends on the kind of day I have had.  If there has been opportunity to rest (ha-ha-ha-ha), I can take it.  If not and it has been a rough day, fogettaboutit!  Sometimes, I startle easily with the most common noises in a house with 3 children and 2 dogs.  The startle makes me jump, the jump makes me hurt, the hurt makes me cranky. 

In all honesty, unless you have a doctor who is willing to really listen and get to know you, there is no perfect pain scale.  Everyone is different and carries a different pain tolerance and response.  I feel that finding that balance between our trust for our doctors and the honesty with them as well as ourselves is key.  I want to tell my doctor how I am really feeling.  But I have to trust that they know I am not exaggerating.  The midwife that delivered my children knew this. She knew enough to get in my face and tell me I wasn't earning any medals by putting myself through more than was necessary.  This was during labor, a gall bladder attack AND a fourth degree tear!  All happening at the same time!  She was good awesome.  Why can't she be my doc for everything?

With everything that I have been through in the past couple of years, I sometimes think that maybe I am just a wimp.  Maybe I have a little pain and I just am handling it poorly.  And then, just as that thought crosses my mind, my body screams it's painful reminders.  No.  This isn't little, this is big...and real.  Real Bad Pain.  There is no scale for this.  There is no "One Size Fits All"

***This post is part of a blog carnival.  Please check out this link for more stories, thoughts and ideas about Pain Scales.  
http://rawarrior.com/crossing-the-language-barrier-of-pain-scales-rheum-blog-carnival/ .

Kelly at Rheumatoid Arthritis Warrior has done a wonderful job of pulling these blogs together for a wonderful and informative presentation.  We all appreciate her dedication.  Please stop by!

Hanging in There

I just wanted to wish everyone a (belated) Merry Christmas.  I also wanted to acknowledge the comments and e-mails I have received from several of you.  Thank you and I will respond shortly.  Currently, things are a bit rough and to type this is quite the painful chore.  I over-did it for Christmas festivities.  In addition, I have been taken off the Humira injections in preparation for the infusions that are to start January 6th...ugh.  That is a long time away in RA land.  But, I am doing fine and taking it slow and easy.  I am very much looking forward to the infusion.  I hear that I may actually feel a difference THAT DAY.  The only time I ever felt instant relief was when I was put on a good dose of steroids for the first time.

Your comments and e-mails always mean so much.  To be able to reach out and have you all reach out to me is beyond comforting.  Thank you so much for your continued support.  I wish all of you the moments of relief we all hope for.  I will be back soon!  Until then, be kind to yourselves.

Rachel