Favorite Quote

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

Thursday, June 19, 2008

He's BACK...

Marshmallow man, that is.  Like they say, "Never say never!"  Well, last Friday (oddly enough Friday the 13th) I was so completely miserable that I had to go back on prednisone.  Yes, yes, and yes I KNOW it was only two days after I had sworn off the 'roids forever.  I really wanted to stay off of prednisone for good, but I reached a point in my illness where there was no other option.  I talked with the docs and there is absolutely no way I can start Humira until the 18th of July, which is when my next Remicade infusion is due, b/c I guess it's bad to mix toxins (who woulda thought). =-)~

SO, predisone was my only option, and to be honest, I was desperate and glad to take the tiny white pills.  I mean, I had a permanent headache and had been overwhelmingly nauseous for the past two weeks.  I was miserable.  My quality of life was non-existent.  I was miserable just sitting on the couch.  It was miserable to eat, sleep, think, poo (duh)...  Words cannot describe how I felt.  Ill, sick, weak, miserable.  So, as you can imagine, it didn't take a whole lot of convincing from the docs to get me to take the 'roids again.  I was glad to take them.  My only fear was that they wouldn't work to their full potential because they didn't do a great job keeping me in remission during my last flare up.  

The docs wanted me to start on 40mg, which made me giggle, b/c I was sure that 40mg wouldn't cut it.   I mean, last time 60mg didn't cut it.  Well, I did as I was told.  I grabbed the ugly orange prednisone pill holder, opened the lid, and stared at the tiny white pills.  Lil' bastards.  Well, there comes a time in your life when you just say, "F*** it" and hope it works.  Well, I put the nasty tasting pills in my hands, thought to myself, "Here's lookin' at you kid" and freakin downed the two 20mg tablets.  What happened thirty minutes later was a complete surprise...

Thirty minutes after taking the 'roids I felt GREAT.  I had my life back.  I was actually able to go to dinner with my siblings and not feel like I was going to vomit (I went to dinner the night before with my sis and couldn't eat because of the nausea).  On Saturday morning I woke up feeling pretty well and went to a baseball game (see the Diamonbacks and Jesus post).  The rest of the week, should I say, has been great!

I have been so active this past week, it's like night and day from the previous two weeks.  On Monday I swam laps, rode my bike on Tuesday, went to (my first) spin class on Wednesday, and had my first personal training session today.  Yesterday I even had an epic poo.  It was seriously the best looking poo I've had in a LONG time.  I'm not going to go into details, but with Crohn's, one very rarely has a perfectly formed poo with no associated "collateral damage" aka blood.  

Tomorrow I taper down to 35mg and will taper 5mg each Friday thereafter until I am completely off the 'roids.  I'm taking full advantage of feeling great at this time, because with a chronic illness one never knows when their body is going to decide to revolt and throw them back into a deep, dark hole of miserableness and uncertainty.  I'm keeping the faith though.  This damn disease hasn't beaten me yet, and I guarantee you it never will.  

I'll keep y'all posted on my health status, but can assure you that I am on a roll.  I hired a personal trainer for the next three months to help me strengthen my bones so I can offset the side effects of the prednisone (osteoporosis is a big one).  Being that I already have osteopenia in my spine, I can't take any chances.  I also plan on riding, riding, riding, especially since I now feel GREAT.  I may be back on the steroids, but for now, they have given me my life back and I'm going to take full advantage of that.  

I find it kinda comical that I was swearing off prednisone for good, and then two days later desperately taking them (I was desperate to take anything that would make me feel better).  This just reflects the roller coaster of this disease, and that is why I've created this blog.  I've created it so you can take the journey with me, and I hope my experiences will somehow help you with your own life struggles.  Until next time my friends...


Mom and Dad said...

We'll be praying that the doctors find the right medication and dosage for your condition. Enjoy your time with family and keep us posted.

Mom and Dad Becker

Lindsay said...

Hmmm. Where to begin? All I can say is Thank you for writing.

I don't feel so alone.

Kevin said...

Hang in there Emma!

jw said...

enough is enough! Get well soon! Do something today that makes you feel good.