Favorite Quote

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

Saturday, July 19, 2008


Great news!  My Gastro doc says after my prednisone taper I am DONE with the ‘roids.  Finally!   

I had my Remicade infusion and saw my doc on Friday.  I definitely wasn’t looking forward to my infusion b/c I was worried I was going to get stuck with a needle like 5+ times.  Because I have been stuck so many times in the past two years my veins now harden and roll or they conveniently “magically” disappear when they know the needle is near.  It’s absolutely amazing what the subconscious-self can do.  I mean, mentally I don't think it’s a big deal, but apparently my subconscious-self does.  The damn thing has a mind of it’s own  and as a result, my veins disappear.  It’s freakin’ amazing.  Take Thursday for example.  I was looking at the veins in my arms and saw a few good potentials.  Conveniently enough, as I was sitting in the comfy La-Z-Boy Recliner in the Ambulatory Infusion Center Friday morning, they were nowhere to be seen.  Interesting. 

 Anyway, the nurse successfully poked a vein in my hand on the first try and the rest is history!  Thank goodness!  My Remicade aka Mouse Juice aka Jerry Juice (as Clarice calls it) was doubled this time around, so hopefully my body will stay in remission once off the 'roids.  So, if I look extra Jerry-ish it’s b/c I have double the mouse antibodies flowing through my veins.  And no, I’m not joking!  I’m a little fatigued and my body is a little out of whack right now, but I think its b/c the medicine is doing its thing.  Cleaning out the bad and healing the wounds.

 After my infusion I saw my Gastro Doc.  As I ever so excitedly announced above, after I taper down from the ‘roids this time I am done with the prednisone.  He is concerned for my bones as well as my eyes.  I guess if you’ve been on prednisone for quite a while it can start affecting your eyes.  I’m just glad that instead of me making my own decision to be off the ‘roids (we all know how that went), my Doc put his foot down and said no more.  It’s a relief.  Trust me.  So, this news is, as Borat would say, “Great Success!” 

 If for some reason I do start flaring again, my meds are getting switched and I’m getting another colonoscopy b/c he wants to check my mucosa and just reaffirm that there isn’t anything shady going on in there.  My doc spoke about possibly putting me on Humira or Methotrexate.  He also said he would write me a referral to the Mayo Clinic in Minnesota.  So, like anything else with this beast, we’ll just wait and see what my body decides to do.  Of course I want more than anything to stay in remission. 

 I flew back to AZ early this morning (THANX DAVID FOR TAKING ME TO THE AIRPORT AT 0430)!  Actually I want to give much love to David, my super awesome neighbor, who put up with my crazy paranoia and silly self.  I also want to thank Barb, who is not only one of my best friends, but my pseudo mama!  You guys are great!  I was only in VA for a few days, but the days were great and well spent.  Yes, even my long day at the hospital on Friday wasn't that bad because things got accomplished and a lot of questions were answered. 

 I’m not planning on going back to VA until mid September for my next treatment cycle, so I’m going to be livin’ it up in AZ, and doing a lot of riding.  Until next time my friends!

Wednesday, July 16, 2008

One Month and Counting...

Great Success!  I am absolutely ecstatic to announce that I have now been in remission for a little over a month!  And yes, I have been taking full advantage of the fact that I am feeling great.  I have ridden my bike so much this past month, it’s been absolutely awesome.  The cycling in Arizona has been phenomenal, and I can't wait to get back so I can ride some more!  I had to leave AZ on Tuesday to fly back to VA for my eight week “maintenance” Remicade Infusion and to see my Gastro doc.  If it was my choice I wouldn’t leave AZ, but I have to get my mouse juice and get some answers from my doc!  For those of you wondering why I couldn’t just get my infusion in AZ, it’s not that easy.  Remicade is extremely expensive and I can’t just switch Gastro docs.  As you know, my case is extremely complicated and I wouldn’t be getting the best care possible if I switched docs for six months.  So, I am going to fly back and forth to get my treatments until my hubby and I move in November (we still don’t know where we’re going yet but I’ll post as soon as I know).

 I am now on 20mg of prednisone (originally started on 40mg) and have been tapering down by 5mg a week.  As soon as I got on the ‘roids I went into remission, but can’t keep up this cycle.  I love the ‘roids (this time around) because it gave me my life back.  My last flare made me so miserable, I was desperate to take anything that worked.  Thanx to the ‘roids I can ride my bike, workout, not be a slave to the commode, not have to worry about having to cancel plans, etc etc.  I am grateful that my body (most of the time) responds to the prednisone, but am sad at the same time because in the past, 3-6 weeks after taperng, I usually relapse.  This has been the never-ending cycle for the past two years and it has gotten very, very old.  I feel great for the few months I’m on the ‘roids and then once off the ‘roids am back to square one.  I just want to be healthy without the use of prednisone and I DO NOT want the vicious cycle to repeat itself this time.  I’m being optimistic that this time will be different...

 I guess the most difficult aspect of being on predisone is that after I’ve taken it for about a month I have days that I look in the mirror and don’t recognize my own face.  It’s hard. About a week ago my sis commented on how my “now” face looked completely different from my wedding picture “then” face taken three years ago.  Well, unfortunately the 'roids will do that to ya.  They make your face puffy.  I feel like freakin marshmallow man and the damn ‘roids create a “moon face.”  After tapering off the ‘roids my face always returns to “normal,” but I don't exactly know what "normal" is for me anymore.  I’m on and off the ‘roids so much that I never have one set “normal” face.  People that have only known me for a few months prob would only recognize me with the moon face, while those who have known me the entire time I’ve had Crohn’s (and before) can tell when I’m off the ‘roids, and when I’m back on the ‘roids.  Arg!  I just want some form of stability.  To be consistent for once. I honestly believe it’s coming, I can feel it.  I’ve never felt as stable as I am now, so I hope things are once and for all working out.  I guess I’ll just have to wait and see…

 My mouse juice infusion is early Friday morning and I see my doc Friday afternoon.  Doc Smith (the most awesomest Gastro doc alive) is doubling the dosage of my Remicade in an attempt to keep my body in remission once I’m off the ‘roids.  I have a little under a month left on the ‘roids, so the true test will be once I’m tapered.  I’m keeping the faith, but get a little frustrated at times.  I know it’s all about patience.  Like I’ve said before, patience is definitely something this disease has taught me. 

As long as I can keep riding my bike, I don’t care what happens.  I want to get off the ‘roids, and I desperately want Remicade to work, but through it all I just want to continue the consistent riding that I’ve been fortunate enough to partake in the past month.  Riding has been so, SO therapeutic for me.  When I ride, I don’t have Crohn’s.  Riding is my time to think, to question, to believe that things will get better soon.  Riding gives me the self-confidence and self esteem that the predisone once took away (I had a hard time adjusting to the moon face and “puffy” body).  When I ride, I question my diagnosis.  Sure, I have been diagnosed with Crohn’s and based off of my two year struggle know that the disease is very active in my body.  I know it is a serious auto-immune illness, I get it.  But just because my body is attacking my digestive tract at this time in my life doesn’t mean I’m going to have it for the rest of my life.  I know science has proven otherwise, but ya know what, who says things can’t change.  Science has been wrong before.  Stranger and more mysterious things have happened.  I am refusing to accept the fact that I will have to struggle with this illness for the rest of my life.  Right now, yes, it’s an awful roller coaster.  But if I give up, and accept the fact that for the rest of my life (I’m 26) I’m going to be living with this, then that is exactly what will happen.  As RenĂ©' Descartes once said,  “Cogito ergo sum” aka "I think, therefore I am." 

 Listen, I’m not in some fantasy world.  I fully understand the fact that I could possibly have Crohn’s for the rest of my life.  I get that.  And if that’s how it’s going to be, then so be it.  But I’m not going to just accept that fact that I’m going to have it for the rest of my life because medical science and docs tell me so.  I’m going to live it for myself, and keep the faith.  This, my friends, is why I ride.  Because riding gives me my life back.  Riding gives me hope.  Because when I ride, my Crohn’s disappears.  Every time I sweat, I’m killing my Crohn's.  I’m not allowing it to control me.  I’m fighting this beast, and have full confidence that I will come out ahead, even if it takes years.