On the road again...

Hitting the road again...this time headed to Minnesota.  My Mom is coming with me - she will be my "Health Care Advocate" - Dr. Oz and Oprah say these are essential.  I only have two complaints about my Health Care Advocate: she "doesn't do night driving" and she cried last time she talked to a doctor about my condition.  So we will call her the Moral Support Advocate/Day Time Driver instead.  My husband gives me horrified looks when I suggest that perhaps I could do some of the driving on this trip, like a little 5 min. spin around the block to Starbucks.  I need some fun!  But apparently I am forbidden from operating any heavy machinery.  It should be noted that my Moral Support Advocate has been known to drive 50+ miles on the highway with the parking break on.  Sounds like maybe she should be forbidden from operating any heavy machinery too.  

So next week I'm having an MRN, seeing another Pudendal Nerve expert - Dr. Stanley Antolak and then headed to the Ma.yo Clinic.  I have no expectations.  I'd like to say I'm going in with hope - but that's not really what it feels like at this point - it's more a matter of going in feeling the pressure to be prepared.  Can I answer all the questions?  Is the pain worse leaning back?  Leaning forward?  Sitting?  Standing?  Coughing?  There's a lot of pressure to be a good patient - to be able to answer the questions in a helpful way.  Sometimes that's hard when you're just in pain all the time in every position.  I'd like to find nuances that may be helpful to finding the diagnosis but that has been difficult.    

As I'm packing, I keep adding more clothes, thinking that perhaps on this trip I will just stay awhile at Ma.yo.  Last time was a week.  I just don't think I can handle coming home without an answer when so many doctors have said this is one of only a couple of nerves.  Essentially, I'm unwilling to leave without an answer.  It will be too heartbreaking to come home without progress.    

I don't have cancer, I'm not dying, I'm lucky -- but a great big pause button has been hit on my life and to a great extent my Husband's life.  I am in pain and I want my life back or some semblance of it.  Lots of our conversations revolve around the "when you get better"....what we're going to do.  Take trips, celebrate our one-year anniversary. Sadly, I'm not sure things will be much different in October.  I hope so though.  That's what I'm aiming for.  I'd be happy with the small scale too.  Go for a walk.  Drink a glass of wine.  Dance.  Hit golf balls.  Stay out late.  Not have a single pill to take.  Stop mixing fiber into my water like an 80 yr old.

I've learned how to mobile update so more from the road...