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...

Sunday, June 15, 2008

Diamondbacks and Jesus

Yesterday we went to an Arizona Diamondbacks game.  As we were approaching Chase Field we ran into the nice man pictured above, spreading the word of Jesus!  I was surprised yet happy at the same time.  He took the time to stand in front of the ballpark in scorching heat and spread
the word.  Anyway, I don't know his name, but if you read this, leave a comment!

As for the rest of the game...

I think this picture sums it all up!  We had a great time at the game and my sis and I had an even greater time harassing Clarice.  The last time I went to a Diamondbacks game (or baseball game for that matter) was during college, when they got beat by the Washington Nationals.  
Anyway, the Diamondbacks lost again last night, but who cares!  Clarice, my sis and I had a great time!  I guess we don't fall under the category of hard core fans...

We met some friendly people.  Definitely NOT the candy man-he was a grade A @sshole!  We did meet Mr. Lemonade man pictured below.  He had the personality all venders should have if they want to sell anything.  Candy man wasn't nearly as cool as this dude, no wonder his freakin' box was full and he couldn't sell anything!

My siblings and I enjoyed the game (though we didn't watch much of it).  This has been the first time in years we've all gotten together (alone) for some sort of event.  We are all so much alike it's RIDICULOUS!  For instance, my sis and I are both Chanel junkies and own a lot of the same Chanel stuff w/ out even realizing it.  And Clarice, good ole Clarice...well if he was a girl he would own Chanel stuff too.  He's got great style though, so that counts.  Anyway, I have a feeling this is the first of many games we'll attend (when we're all in the same place).  I love you guys!!!  I had a GREAT time guys, love ya!!

Thursday, June 12, 2008

Love You, Love Bug

My husband is absolutely awesome!  Yesterday was our three year anniversary.  Though he is across the world he managed to call me and send me beautiful flowers!  Both were quite a treat, and definitely a nice surprise.

Family and friends know exactly why this was such a treat.  For the rest of ya, use your imagination, but it's not going on my blog!  

My Matt, if you get a chance to read my blog, know that I Love You and miss you very much!I  You are, after all, My Love Bug. =-)~

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.

Friday, June 6, 2008

Home Sweet Home

Clarice and I made our trip from VA to AZ in 3.5 days!  It was definitely a blast, and our dumb and dumber personalities definitely came out!  Let's just say we do a great job feeding off of one another's ridiculousness!  I know I've been seriously slacking with my blog updates...I promise I won't go MIA again and will do a better job updating my blog bi-weekly!  It was crazy leading up to the trip (getting my house ready to sell, Remicade Infusion, paperwork, etc etc).   We left VA on May 26th and arrived in AZ May 29th.  The first day of our journey we stopped about 200 miles outside of Memphis, TN.  Below is a pic outside of the non-pet friendly Holiday Inn Express that we couldn't stay at b/c of my pup.  We ended up staying down the hill at a place called "Nanny Creek Inn." 
And NO I'm not as chipmunk like as this pic makes me look!  Oh, I've finally tapered off the 'roids by the way (thank goodness)!  My face is starting to return to normal (see the "Hello Chipmunk" post for a steroid like pic).  And of course, my body is starting to de-swell itself and get back to normal.  I always gain about 10-15 lbs on average when I'm on the 'roids.  People may roll their eyes when I say I'm 120 lbs when I'm on the 'roids, but remember, I'm five foot one!  Anyway, the pic above is a beautiful one (not me-the scenery...I'm not THAT stuck on myself)!  We don't have mountains or greenery like the above pic in the Hampton Roads area of VA. 
On the second day of our journey Clarice and I wanted to get through both Arkansas and Oklahoma and spend the night in Texas.  We ended up driving 14 hours on day 2 and landed pretty much on the Oklahoma-Texas border.  The below pic is of a dark, scary cloud we saw in Arkansas.  Let me just say this, the dark dark clouds appeared to be "brewing."  It was perhaps the scariest scene I have ever seen and I was convinced a tornado was on the way.  Out of nowhere rain started pouring down and visibility became non-existent.  I decided to slow down to 70 mph, which apparently wasn't slow enough because my V-dub hydroplaned for a brief moment.  SCARY!  Luckily we were able to drive out of the torrential rain storm after about five minutes!  The pic below does not accurately portray the scary dark brewing cloud, but it gives you a tiny image of the scariness we saw!
It took us a few hours to drive into Oklahoma once we drove out of the scary storm in Arkansas.  I can officially say that Oklahoma has the worst interstate out of the seven states we drove through (Virginia, West Virginia, Tennessee, Arkansas, Oklahoma, New Mexico, and Arizona).  I'm talking about HUGE potholes, cracks, uneven roads...there was a point where we were driving on the WRONG side of the interstate due to road construction! Crazy!  That night we stayed in a small town called Clinton.  My mom always said "If you don't have anything nice to say don't say anything at all," so I'm going to keep my mouth shut about that little town!  The hotel we stayed in definitely fit the definition of an infamous "roach motel."  Eek!  Definitely the trashiest place we've ever stayed...BUT it was pet friendly, so I can't complain too much.  
After our 14 hour drive the previous day Clarice and I were not interested in driving for more than eight hours, so we stayed about 60 miles from the New Mexico-Arizona border.  My dog decided to lick his rear at one point of the drive and I yelled my usual, "NO LICK" at him.  He decided to get pissed off, stand up, turn his back to us, and totally ignore us for about thirty minutes!  It was hilarious!  He definitely takes after me with his attitude.  Like they say,  "Pets are reflections of their owners."  
Later on that day we were looking for a hotel and found a nice pet friendly hotel, but all the pet friendly rooms were booked!  We were starving by that point so we decided to leave the dog in the car and eat (for you PETA folks-I ALWAYS leave my car (and A/C) running during the summer months if I leave my pup inside.  I simply lock the car door with my valet key).  Clarice and I ate, and when we returned, Caesar (my dog) had his paws crossed, looked at me, looked at my bro, and then looked away.  Attitude.  Again.  That's my pup!  It gave us a good laugh...again!  Fat, happy, and tired we drove off to find another pet friendly hotel.  The below pic is of a beautiful New Mexico sunset.  
That's one thing VA can't touch...a beautiful western sunset.  Yeah, yeah, I know the pic is crooked!  It adds personality ;)  
The day after, we made it to AZ!  It was a quick drive and we arrived safe and sound!  We met my mom for lunch and then unloaded the car.  Caesar was happy to run into the backyard, as he had been a little cramped for the majority of my trip.  I drive a GTI and it fit my bike, all my luggage, my juicers, cookbooks, etc etc in the car, as well as my dog.  He had plenty of room to lay down but didn't have the entire back of the car like he is used too.  
As far as my Crohn's is concerned, the trip wasn't too bad.  My lower abdominal swelled up each night due to the long driving, but I managed not to have any accidents or uncontrollable flare-ups, so I was definitely happy!  I had my  mouse juice infusion three days before traveling, so had a brief window to travel that would guarantee no major flare-ups.  That's just something you gotta think about when you have Crohn's.  No biggie though!  We made it safe and sound with no major incidents!    
Since I've been home I've been teeter-tottering a bit.  I've finally tapered off of the 'roids.  Unfortunately steroids don't have the same effect on me like they used too.  They used to kick me right into remisson and used to provide a 3-6 week blanket once I had fully tapered off.  Well, the good (and bad) news is that it took about three weeks on 60mg of prednisone to kick me into remission and unfortunately I started flaring about three weeks before fully tapering off the the 'roids.  I am viewing this as a blessing in disguise because I have suffered pretty much every side affect of prednisone.  Because I have built up an immunity to prednisone I (hopefully) won't have to take it anymore when I flare.  Why put my body through that when the medicine isn't nearly as effective as it used to be?
We'll see what my doc has in store for me next.  It is seven more weeks until my next infusion and I've been pooing blood, even had an accident.  NO I DO NOT feel sorry for myself, I am still riding my bike.  I am thankful every day I wake up, and thankful I can ride my bike, though I don't always feel well.  But, it is what it is.  And everyday I wake up is a good day.  Okay, enough mushiness!  All I have to say is, if you're perfectly healthy I don't want to hear you complain.  Be thankful for your health and get your @$$ out there and enjoy mother nature and the beauty she provides!  For me, it's by riding my bike, for you...it can be something as simple as taking a freakin' walk.  Just don't take your health or any day you're alive for granted!  'Nuff said! =-)~