Wednesday, April 27, 2011

Update 4.27.11 - Mayo Appointment

Last Thursday, Brad and I headed back down to Rochester for 3 more appointments.  The first was with a physical therapist who ran through my daily stretching with me and showed us how to add bits here and there to build resistance and then strength.  We’ll have to decide whether we want to continue with check ups there or move to a local PT location once I master the assignments given to me last Thursday - which won’t be any time soon.
The next appointment was with an occupational therapist who taught us lots of ways to conserve energy throughout the day.  This was really cool, especially since budgeting energy is one of the core tactics used in flares.  Since last week, I have noticed a difference in my energy throughout the day when utilizing some of these tricks!  It’s all about making things easier, not because you can’t do it, but because it can be done an easier way that won’t wear you out.  
The OT appointment was like a massive “Ah Ha” moment for me, because the therapist answered my questions about the scheduling and planning that I had - that were becoming really overwhelming.  He really broke the info down so that it made sense and wasn’t so intimidating.
Our shopping list includes a 1 and 2 pound dumbbell, a light resistance band, a couple of stools and a small stepping stool.  All things that will help get me stronger again, and help save my energy around the house. 
We were initially going to return the following day for the wrap up appointments from the Fibro Clinic, but the gals and the front desk slipped me an inside tip... that one of Mayo’s top doctors was going to be in their office that day and that there was an opening after my OT appointment.  We took it!  This appointment ended up being one of the biggest turning points in our journey here.
This doctor was amazing.  He began by asking me about some of my symptoms, and then if I had any questions.  I told him about the Neurontin, and the tiny bladder hypothesis, the sleep disturbances and all my questions from my new doctor.  Here is what we learned...
First, forget the tiny bladder crap.  Oh, thank God.  I had mentioned that, okay - so if I did have this tiny bladder problem, what would I even do about it?  Answer: nothing.  He said, regardless if you have it or not, they will tell you to do the same thing - and proceeded to tell me to wait 30-40 seconds when I wake up at night before getting up to pee.  Why put your body through more stress?  Not only will you most likely fall back asleep because you will be retraining your body to not wake up unless you really have to go, but you’ll stretch out your bladder by holding it in a bit more.  Problem solved.  I am already waking up less.  Incredible.  Canceling the cystoscopy.  
I have to wonder if this will piss off my new rheumatologist or not...
Next, I am a unique Fibro patient.  I am special because I have these super-powered senses in a flare; specifically smell, hearing, feeling temperature.  This puts me in category of individuals who benefit greatly from the following techniques: meditation and reading about [my own] suffering.  What?!  That’s what I said too.  Reading about how people throughout time have dealt with suffering; philosophy, enlightenment.  Perfect!  That’s right up my alley!  
I knew that Dr. Amazing was...well, amazing when he said, “There’s a reason why people have been practicing these things for thousands of years.”  This from one of the greatest medical facilities in the world.  I love you.  I almost said it.  In the car on the way home Brad said that he thought I was going to ask him if he’d be my primary doctor right then at that moment.  Like, “Will you marry me?” except, “Will you be my Doctor?”  
Dr. Amazing went on to re-explain to us the ways that the brain takes emotional or physical trauma and preps itself for the fight or flight response.  In rare instances (aka Fibromyalgia), all it takes is one major [good or bad] stressor; like a work issue, a loss, or planning a wedding, to trigger that fight or flight response to get stuck in the “On” position.  

Fibromyalgia is not as much of a physical syndrome as it is a nervous system condition.  At some point in your life, you’re set up just perfectly for it.  It’s whether your particular body is destined to get stuck in the “On” mode or not; and then, it’s just a matter of time.
I mentioned some of the “traumas” in my past, both emotional and physical.  He said that my experiences are much like most other patients of his.  Amazing.
We also reviewed the ways that the brain creates pathways, which is fascinating to me.  The saying “Fake it until you make it,” is actually the fibro doctor motto because your brain doesn’t really know the difference.  It just learns the new path.  

Our brain needs to be taken back to that peaceful and normal state; to be reminded of that pathway.  This is how you turn the fight or flight response off.  We can train our own brains to choose that path with these methods.  Meditation and enlightenment.  I was floored.  An incredible day.

We left with two books to read before bed, first “The Mindfulness Solution to Pain: Step by Step Techniques for Chronic Pain Management,” by Jackie Gardner-Nix.  Next, “Man’s Search for Meaning,” by Viktor Frankl.  Dr. Amazing was also funny; he warned me not to read the introduction by Frankl because it is “god-awful boring.”
I am beyond thrilled.  Excited to share more next week on my status!

1 comment:

  1. Maren,

    Glad for the positive direction. I continue to pray for you, I know some of that literature and have some others for you later. Let me know how the Gardner-Nix book is, it might help with my phantom pain. Hang in there. Keep the faith. Stay strong.