Favorite Quote

"We cannot change the cards we are dealt, just how we play the hand."
-Randy Pausch

Wednesday, June 11, 2008

Farewell Marshmallow Man...


Prednisone.  I just can't do it anymore.  Look, I'm all about being positive.  I rarely let this disease get me down.  But, I'm going through a funk at the moment.  Not only have I been ridiculously nauseous these past two weeks, but I've also had a permanent headache.  Just when I think the damn thing is gone it pops up again, kinda like a permanent stalker.

My flares are starting to get worse, and I'm starting to get a little frustrated.  I tapered off the 'roids a few weeks ago.  Let me give you a little history on my relationship with prednisone.  It's always been a love/hate relationship.  When I was diagnosed two years ago I was given prednisone for the first time.  About 3-6 weeks after tapering, I started flaring again.  Thus began my dependency (and love/hate relationship) on prednisone.  Basically I would be on the 'roids for a little over four months, taper, and about 3-6 weeks later, relapse.  This has been the vicious cycle that has repeated itself for the past two years.  

The "love" part of my prednisone relationship (or should I say addiction) was that it (until recently) had always kicked me into remission the day after taking it.  It also kept me from flaring 3-6 weeks after tapering.  The "hate" part was the side effects.  I always felt like marshmallow man, turned into psycho lady, gained weight, looked like a chipmunk, lost hair, became nocturnal, etc etc.  Oh, and it also gave me osteopenia in my spine.  I didn't really mind the side effects so much (besides the osteopenia), b/c prednisone temporarily gave me my life back.  I could ride as much as I wanted, and pretty much do whatever I wanted without the fear of having  a flare-up.  It's nice being "normal" every once in awhile...but that leads to my next question, what exactly is "normal?"  I guess it varies from person to person.  Or so I'm learning.

Well, my love/hate relationship with prednisone is over.  My body has built up an immunity to it and prednisone is no longer able to fully keep my body in remission.  It took me almost three weeks being on a high dosage of steroids to kick me into full remission.  Three weeks before I tapered off the 'roids I started relapsing.  This has never happened to me.  But, in a way, I am relieved.  My relationship with prednisone is now over.  For good.  

I am currently on Remicade aka Mouse Juice, and it's not doing it's job.  The next step, according to my doc, is putting me on Humira.  Humira is very similiar to Remicade, the only difference is that Remicade is made of mouse antibodies (yes I have actual mouse flowing through me veins, not many people can say that)!  In contrast, Humira is made up of human antibodies, vice mouse antibodies.  Humira is given by injections whereas Remicade is given by infusion (thank goodness no more infusions...my veins can't take much more)!  

I don't want to leave AZ early to go back to VA for the sole fact that I'm flaring.  I've only been here two weeks!  I don't want to disrupt my visit with the 'rents and family because I'm having a flare.  I'm tired of having this disease get in the way of my life!  So, I am going to try some "mental toughness" (thanx Wayno!!) to fight this beast.  My doc would naturally want me to start prednisone again, because that has been the pattern for so long, but I am unwilling, especially since it doesn't quite work for me anymore.  And I've been on it for too long.  My body is tired, and it's not worth it.  I want to prove the impossible.  I want to show my doc (and myself) that I can fight this flare and kick myself into remission.  The hard part for me is being extra careful in everything I do.  That includes not pushing myself too hard on the bike (I tend to be a competitive meat head, so this should be interesting).  BUT I can be disciplined and not push it, especially if it helps me get better once and for all.  

When I get back to VA in July I will more than likely be put on Humira.  I really hope it works, but if not, I will go on Methotrexate.  If that doesn't work, off to the Mayo Clinic I go.  The Mayo Clinic in Minnesota specializes in Crohn's Disease when conventional medicine has failed. 

The positive side of all of this is that each flare teaches me something valuable about life.  Getting sick has shown me just how much I rely on my bike to keep some normalcy in my life.  I can have episodes before and after riding, but never have the urge to have an episode while on the bike.  Perhaps it's because riding has a strong healing affect on me.  Who knows.  All I know is that I want to get back to racing...as Randy Pausch once said, "An injured lion wants to know if he can still roar" (in my case lioness). =)  

It will be done, so stay tuned.  I'm not giving up this easily.  I can survive without "the juice."  Some medical experts may not think so, but I know so.  It's my body, and I will overcome.  I will give y'all updates, so wait and see.  And to you, awful Predisone, I'm glad you're now out of my life...for good.  No more marshmallow man.  Finally.


Anonymous said...

Yeah! Way to keep the roids away ;) I pray you never have to take them again, but I'm still glad you didn't throw them away yet :( Love you tons and can't wait to see you again.

Your Matt

Anonymous said...

Hey Emma, it's Tom. I'm back from Idaho. You can check out my trip on my wife's blog. www.crazygallants.blogspot.com. I got to go on 2 rides. It was a lot of fun with nasty hills. Glad to see you off the roids. I'm planning a ride on Saturday early. Planning on going out to Canyon Lake. I don't have my cell phone cause I lost the charger on the trip. I'll try to get a hold of you tomorrow. Hope your legs are warm.