Heather Seaman with something to write about

moving forward

May 29, 2010 at 5:46 am (Uncategorized)

I have so much to say I don’t know where to begin.  It’s taken me some time of silence just to process this all enough to start typing even now.  But for those who have followed me done this road and anxiously await something to know, my physical body is healthy.  This leaves my brain not as fortunate.  The problem does primarily lie in my brain.  And since the brain is so complex, a world of unknowns is ahead of me.  l I have been diagnosed with Myofascial Pain Syndrome and Chronic Fatigue Syndrome.  I will live with them.  There isn’t a cure, but there are still avenues to take for relief.  There’s still a lot that Dr.’s don’t know about what I have and so there is no target to hit and make things better.

Mayo does have the only place in the world devoted to chronic pain and the leading place for research and help. I return to Mayo June 21st-June 24th for a series of more appointments at the center for chronic pain management and chronic fatigue.  They have a 3 week clinic that I will work towards getting in to.  It teaches valuable skills towards living and managing what has taken it’s home in my very body.  They do know that this residency is often began by a trauma, in my case a spine trauma that went on for quite some time.  Even after the trauma is fixed, the brain remains in chronic pain.

A couple of ways it was broken down for us are these…  All pain receptors are found in the brain.  No matter where you feel pain it registers in your brain.  If I were to have my brain scanned, my pain receptors would be signaling as much as someone’s who just had their leg cut off in a car accident.  My brain is overstimulated for some reason and for some reason only effecting my right side.  If the average person were to play ball or lift something heavy, they may become sore, but since my brain is overstimulated my brain reads that soreness as though I were being stabbed with a knife.

As far as the fatigue comes in to play, we have been informed that these go together often because my brain isn’t recharging.  Just like a phone needs to recharge, so do our minds and mine doesn’t because it is always being stimulated with chronic pain.  I started new medication today in hopes to cut some of the edge off and help with rest.  Dr. Hurt did say he couldn’t function like I do with all that’s going on in my brain and body.  That also throws people off, but it’s simply because I have worked very hard at implementing healthy habits towards pain management already.  Most people give into it and I have fought to survive against it.  Though my grip is about to slip.

That’s where the 3 week clinic comes into play.  They get your body into habits and would have me fine tune the skills I know.  It’s setting up priorities, making life changes, etc.  Everyone’s body responds a little differently and though my brain won’t change scientifically, there’s hope for the ability to do more.  Many of the challenges I have already faced this last year will only remain, but there is something to be said about knowing you need to give-up more and so acceptance will be my immediate next step.

One nurse says, “Although you’ll never be able to run a marathon, you could maybe do a fun 5k someday.”  Immediately I want to say, “Well, that’s not good enough!”  But I don’t.  I think to myself the problem isn’t that I don’t necessarily know how to keep the pain manageable at times it’s that I want to do what I want, when I want, and how I want and then… I still don’t want to hurt.  Oh God has so much to teach me, such bigger plans, more meaningful, less selfish.  So, even though grief wants to steal my heart, I have a lot of future ahead and have a new home at Mayo when needed.