Merry Christmas!!!

Matt, Caesar, and I wish family, friends, and anybody reading this blog a VERY MERRY CHRISTMAS!!!  Please forgive us for not getting Christmas cards out; we just moved to WA State from VA and have been in a constant state of disarray (what else is new)!!

Let It Snow...

SO, my hubby and I are supposed to be in Arizona right now.  But mother nature, well, she had another plan.  

We spent the night at the Marriott adjacent to the airport last night for the sole purpose of NOT getting snowed in at home as they were expecting a foot of snow throughout the night where we live in WA.  

And our clever lil planned worked, until we got to the airline gate...

We checked our luggage in, checked out the airport mall, and then got to our gate.  It was then that we learned our flight was cancelled.  It went a little something like this:

Airline Worker:  "Flight XXX has been cancelled."

My thoughts: No way, NOT the flight to Phoenix.  It's sunny there.

Airline Worker: "It can be several days until you get rescheduled."

My thoughts: We're going to Phoenix, not our flight.  There are sahuaro's, dirt, and sun there.  Old people from cold climates go there for the winter.  CAN'T BE MY FLIGHT!

And then I looked up.

And saw that the Phoenix flight that was supposed to take off at 0815 was still sitting at the gate.  With passengers on it.  Getting de-iced.  With the frustrated pilot slumped over the controls (and YES, you could see him slumped over the controls).  Well, that's holiday travel for ya!

So yes, it was our flight.  Cancelled.  BUT we were able to reschedule for Christmas Eve, so I won't complain too much.  We had to take a little airport shuttle bus back home.  What was supposed to take an hour and fifteen minutes to get home from the airport ended up taking over four hours.  But we're home safely.  And I got to come home to this:

 So my friends, I leave you with this.  We just have to accept that there are things in this world that we have absolutely NO control over (like cancelled holiday flights!).  And it sucks.  Trust me, I was hella pissed this afternoon.  Today, I had serious issues accepting that there was absolutely nothing I could do to fly out to Arizona.  But then my dad reminded me to just brush it off and keep going.  Kinda like how a duck's feathers repel rain.  It's hard to accept the uncontrollable.  Arg.  But, like Dory in the movie "Finding Nemo," Just Keep Swimming...

And Here's To You, Mr. Akre

Mr. Akre, this post is for you...

A week ago I met an individual that I will never, ever forget.  He is a man of great courage, commitment, selflessness, faith, and hope.  And he is, my friends, going to be an anomaly...

As I walked into the Ambulatory Infusion Center my brain was spinning.  I knew I was going to get my Remicade Infusion regardless, but wasn't looking forward to getting poked by a needle, wasn't sure if they were going to find a vein, didn't want to sit there for 3+ hours, etc etc.  As I was waiting to get taken back to my room I looked down at my arms and saw a few healthy veins.  I slyly smiled because I knew that the lil bastards were going to disappear as soon as a needle pierced my skin, or rather, came into the nurses line of sight.  They roll, harden, and hide when it comes to getting pricked.  I firmly believe in the subconscious self.  People, I'm not crazy, it's real.  I don't freak out when I get stuck with a needle.  I can be as calm, cool, and collected as I want to be.  But my veins, well, they have a mind of their own.

I was led back to the four chaired room and sat in between two Chemo patients.  This is when I met the man who made my heart bleed.  

Mr. Akre is a  young man of 59 years old.  As we started chatting I learned that he graduated from The Boat School in 1972, retired as a senior officer from the SWO community, and had a loving wife and a 31 year old daughter with a successful business of her own.  I also learned that he had lung cancer.  And that the docs gave him 7-12 months to live.

We were talking about his cancer when he told me they gave him 7-12.  I stopped for a minute, not sure what I had heard.  I carefully asked, "Wait, you've got 7-12 months left on Chemo?"  Mr. Akre looked at me and said, "No, they say that is my life expectancy."  

I cannot describe the emotions I felt at that moment.  It's like getting hit by an overwhelming emotional mack truck.  Your heart melts, cries, bleeds, wants to reach out and hug this man and tell him everything will be alright and that he will grow old with his wife and see his grandchildren be born and grow...

After I got over my initial shock I looked at him and said, "Don't listen to them, they don't know.  YOU will be the anomaly."  And he smiled.  He's a double major from Boat U in math and engineering.  He knows what being an anomaly means.  And he will be.  Mr. Akre has guts and the drive to survive and beat this thing.  And I'm confident that he will.  When discussing the side effects of Chemo he said, "Even if the chemo makes me really ill I'll do it, because if it gives me one more month, it's worth it."  

And then a man who was supposed to be dead 10 years ago piped in (Mr. Akre was to my right and this man, whose name I don't recall, was to my left).  He said, "Ten years ago they gave me 6 months to live.  I'm still alive today.  It's all about having a positive attitude."  This man had a very rare cancer called liposarcoma, which is cancer of the fat cells.  At the time he was diagnosed there were only 74 documented cases of liposarcoma in the world.  His docs gave him an expiration date, and he kicked them in face by being alive today.  

His comment led to a room wide discussion (three chemo patients, two men and one woman, and our nurse were in the room with me).  Our nurse said that some people get tired of the fight and are just ready to go home.  They are tired from the overwhelming pain and suffering that is not only caused to themselves, but their loved ones as well.  We all agreed that life changing day that we were all fighters and would not be beaten by our illnesses.  We then laughed and joked.  Mr Akre joked that he has paid into social security his entire adult life and will be damned if he doesn't see any of that money!  The man whose name I can't recall joked that when he first married his wife (after he was diagnosed with cancer) he told her that she didn't have to worry about him dying because he didn't want her to be happy a day of her life, and by him dying, she would be happy.  Our room laughed.  Through all of the pain, suffering, and cheating death, we laughed.  Our room was so loud that we could be heard down the hallway.  There was faith and hope in our infusion room that day.  The man who was supposed to be dead 10 years ago was an anomaly.  Mr. Akre is well on his way to becoming an anomaly.  And the woman, well, we never did get to talk to her much, but she laughed and felt the positive spirit that arose in our room that day.  She too, whatever her internal battle is, will be an anomaly.  As for me, though I feel my struggles do not nearly compare to these three individuals, will just keep thanking God for my blessings, health, and wonderful family.   

This was an afternoon that changed my life.  Emotions arose that I never knew existed.  I saw the important part of life that day.  We wake up, complain, go about our normal day to day lives expecting that we will have another day.  We don't worry about possibly only having months to live.  When you look at the world from the eyes of a cancer patient, terminally ill patient, or one who suffers from chronic illness, you will see that things you thought were important were never important at all.  You will then cherish every moment of every day and be thankful for what bit of health yo do have.  And, most importantly, you will be thankful to be alive.

Keep fighting Mr. Akre.  You are, after all, the anomaly.

The below pic was taken on my last infusion day at Portsmouth.

Just to give you an update on myself, I have officially been in remission for 2.75 months WITHOUT the use of prednisone.  This is the first time, in almost three years, the entire time I've had Crohn's, that this has happened.  My Gastro doc more than doubled my original remicade dosage and that seemed to do the trick (GREAT SUCCESS).  

Sadly I have left my Gastro family in VA for a new Gastro fam in WA.  I have my first appointment this Tuesday with my new Gastro doc.  Doc Smith, you will be missed!  For the nurses that took care of me during my infusions, thank you.  For the entire Gastroenterology Department that helped me through relapse after painful relapse, thank you.  You all are awesome and definitely set the bar astoundingly high.  Thank you for taking care of me.  I will miss you all.  =(

And to all of you who have taken the time to read this post and others...I will never go over two months again without an entry!  No excuse for that!  Writing is my therapy, and I hope it helps you in your daily life journeys.  Until next time...

All Bruised Up

I wrote this post this afternoon while I was getting my infusion at the hospital...

At the moment I’m in the hospital, at the ambulatory infusion center, sitting sandwiched between two women who have Crohn’s.  The girl to my right was, like me, medically retired from the Navy due to the severity of her illness.  The girl to my left has a port, is skinny as hell, and won’t eat much because as soon as she puts anything in her mouth she has to go to the bathroom.  Today there are no chemo patients in my room; just Crohn's patients hoping that remicade, the "miracle drug," will aid us in claiming our health back.  

The girl with the port was pretty bitter, and I can emphathize with her.  Actually, I feel awful for her.  I feel awful for anybody who is sick with cancer or an incurable illness.  I feel awful for a lot of things, but her presence really threw me into an array of emotions.

When she walked in it was as if a dark cloud filled the room with gloom.  My chest filled with the emotion of great sadness.  The presence of that emotion overtook my body and for a brief moment I felt as though a foreign invader had taken my body over and was trying to throw me back into a bout of self pity, sadness, hopelessness, and whatever deep dark emotion one has.  Maybe she reminded me of how awful the disease was.  Maybe it was because she shamelessly stared as three nurses were working on my arms, trying to get a vein.  

It could have been the fact that my veins no longer work properly and decide to roll or harden every time the prick of a needle pushes through my skin.  Or the fact that four veins blew each time the needle was pushed into them.  Or maybe that at that moment I was surrounded by others, just like me, who deal with the roller coaster of being sick again and again.  Not knowing what each day is going to hold.  The frustration of not having control.  The frustration of completely giving up control and hoping for the best.

It was something, but I didn't let it win.  I felt these awful emotions for a few minutes, but fought them off.  I reminded myself how far I've come the past year.  How strong I've gotten on my bike over the past few months.  How I've refused to accept the fact that because I am ill I have to show it.  Most people that meet me and don't know me will never know I am ill.  I don't display my sickness on my chest like a scarlet letter.  And so, I've won.  Yet again.  Little victories.  But the struggle isn't over.  It will never be over until I no longer have to get treatments and can come off of the toxic meds.

But I'm not alone.  Everybody comes to the ambulatory infusion center for the exact same reason.  Whether it be cancer or chronic illness, we all have one thing in common.  The hope that our individual treatments, as toxic as it may be, will help us get better and allow us to return to normal life.  

I will never forget the first time I came for my infusion a little over a year ago.  I’m not sure what I was expecting, but I wasn’t expecting what I saw.  I was introduced to a completely different world.  The world of people, doing what they can, to merely stay alive.  It’s one thing to hear that cancer patients need chemo to stay alive, but  it’s a completely different story to sit side by side them and see first hand the emotional roller coaster they and their families go through when they are getting their treatment.  It's also not very comforting to sit next to other Crohn's patients, in the same situation as you, just trying to get by.  It's not comforting because I don't like to be reminded of how common this virtually unspoken disease is.  Crohn's patients suffer in silence because they are embarrassed to tell people that they, as adults, can no longer control their bowels when flaring.

It was that day that I saw life in a completely different light.  I saw what was truly important in life.  An epiphany if you will.  I realized that for years I had taken my health for granted, and at the same time was thankful that I have a chronic illness and not an advanced form of cancer.  I got angry at healthy people who still take their health for granted and don't know how good they've got it.  I was scared, speechless, shocked, and was overcome by sadness.  This was the "other" part of life that most don't speak about.  The part of life that, when it hits you and takes your health hostage, forces you to look back and kick yourself in the ass for not taking that vacation because you thought you didn't have enough time, not spending more time with your family, for spending too much time at work, for not taking that risk in fear of failing, etc etc

As I walked through the bare white hallway and peeked in each room I saw faces of fright, defeat, optimism, strength, and hope.  Each face had a different story, a different personal struggle, a different illness they were trying to kick.   

When I got to my room and sat in my chair I looked to the left and saw a mother getting chemo.  This was her life.  This was real life.  Getting healthy had to be my mission.  Getting healthy mattered.  For all of us.  All of us making ourselves sick with our toxic treatments so we can ultimately get better.  Sacrificing for the greater good.  We ever so desperately want back the healthy life we once took for granted.

It was at that moment that I realized that the only way I was going to survive and beat this beast of a disease was by digging down into the deep depths of my soul and seeing me for who I was.  I realized that I had to take my life back, in one way or another, so I can live long and healthy...

And here I am, a little over a year later, all bruised up with nine needle marks and four blown veins in both arms.  Though today was incredibly painful, sad, and emotionally draining, I still refuse to give up.  I've come a long way, and have a long way to go.  

Alive and Kickin...

The pic above was taken from the "kiddy" room in my ENT's office the day I learned I was going to have surgery.  For some reason, they always put me in the "kiddy" room.  I know I look young, but not that young.  I'm an adult people!  Anyway, there are fish hanging from the ceiling all over the room, so I thought I'd strike a pose while waiting for the doc.

I am happy to announce that the surgery went very well on Monday morning.  I was a little nervous, but was glad that the tonsils were coming out.  They have seriously been unbearable the past two years.  I was a little comedian ("It's been nice knowing you Clarice...") and in good spirits while the nurses were getting me ready for the procedure, but got a little freaked when they rolled me back to the OR and started strapping my arms and waste down to the table.  I starting shaking and was definitely freaked, but didn't have long to think about it as the general anesthesia kicked in as soon as I started inhaling the little mask thingy.

I have been recovering very well from the surgery.  The pain is not nearly as bad as I was expecting.  I had heard horror stories about adults getting their tonsils out ( and yes it is a million times more painful to get your tonsils out as an adult).  I was expecting my throat to feel like glass particles had been embedded in my throat or something.  Obviously I have pain and my throat gets really sore, but it's not unbearable.  The Percocet definitely controls the pain but leaves me high as a freakin kite.  I hope to be off of the stuff by next week, I really don't like the way it makes me feel.  I can't see how peeps can get addicted to that stuff, yuck! I'm lucky my ENT is such a great surgeon.  If he wasn't, I'm sure the pain would be awful.

Anyway, I've had about enough of the "Lifestyles of the Lazy and Fatabulous."  I've been laid up on the couch since Monday afternoon and am going nuts laying around so much.  I think I've watched more TV this week than I have the entire year.  Oh well, at least my 'rents get every movie channel known to man and Brad has more movies than freakin Blockbuster.  

Much thanx to Clarice, Seester, and Brad for taking such great care of me.  If it wasn't for you guys keeping me in check and waking me up to get my meds I'd be in a world of hurt.  Y'all rock!   

 I decided to break out of the house today so my bro took me to Whole Foods to get more Rice and Soy ice cream and popsicles.  I can't eat cow ice cream thanx to the Crohn's and have found that rice and soy ice cream are great alternatives.  There are many pros to this healthier alternatives anyway.  Much less fat, sugar, calories, and preservatives.  Y'all should try it out.  I never would have tried them had I not gotten a tonsillectomy, but am now totally hooked.  In case you're wondering, they don't make goats milk ice cream, and if they did, I'm not sure if I'd eat it.  It took me a little while to get used to goat milk and goat milk yogurt, so goat ice cream wouldn't exactly be an option.  Getting out of the house was great, but took everything out of me.  I guess I really do need to just rest and stay put for the next week.  I want to hurry up and heal up, so it's a done deal.

I see my ENT a week from Monday and hope that I'll be good as new by then.  Like I said, the pain is not nearly as bad as I thought, and the tonsillectomy was definitely worth it (not like I had a choice anyway).  I appear to be healing normally, so we'll see how it goes.

Last and certainly not least I wanna wish my Grammy Girl a Happy Bday on Sunday!  Love ya Grams!!!

Surgery Tomorrow!

SO, I found out Friday afternoon that I am going to have a tonsillectomy first thing Monday morning.  Talk about a fast turnaround!  I've been having problems with my tonsils for the past two years, and they've just gotten bad enough where they need to come out.  I'm not excited about the surgery, but am glad they're coming out.  They've been a pain in the @$$.   

I was supposed to fly to VA to get my next Remicade Infusion this coming Friday, but it's not going to happen anymore.  If I got my infusion this Friday I would have to wait four weeks to get my tonsils taken out b/c general anesthesia can't really be mixed with Remicade.  Right now I pretty much have the least amount of Remicade in my system (as I'm due this Friday), so I might as well have the surgery done while I have the least amount of toxins in my system.  The ENT got me in as quickly as he did b/c the longer it takes for me to get my surgery, the longer I go without my medicine.  I'm not sure when I'll be able to fly back to VA for my infusion after my surgery b/c my Gastro doc gave me a BIG time frame ranging from 10 days to 4 weeks post surgery.  What the?!  I guess it depends on my recovery.

I figured there is never going to be a convenient time for me to get my tonsils taken out with this disease, so this is prob the best time.  I'm healthy right now, and there's no guarantee I'll still be in remission in four weeks.  I think my recovery time will be about two weeks, but hopefully I'll be able to spin easy a week from tomorrow...we'll see.  I am pissed about not being able to go to Interbike though.  Oh well, there's always next year.  =(  

Below is a pic of the rising AZ sun as Mike and I were getting ready to ride up South Mountain (SOMO).

I decided that since I'm going to be off the bike for at least a week I might as well go all out.  When Mike let me know he was riding SOMO today I thought that would be the perfect ride pre-surgery.  I'm not going to lie; I was a bit intimidated b/c I've heard horror stories about the constant climb up the mountain.  Last night I tried to convince Mike that we should ride out by Sahuaro Lake, but he wasn't havin' it.  Needless to say, we rode SOMO today and I am absolutely ecstatic that we did!  It was challenging, but not nearly as bad as I thought.  I guess I really am much stronger than I originally thought(yeah Mike, you were right)!  

Below are some pics from the peak of the mountain.

This is a pic of me at the peak of the mountain.  I almost puked when we got up there!  

And you wonder why I love this place?  AZ has AWESOME cycling.  So many different routes so things don't get boring, TONS of climbing...what's not to love?  

Anyway, I'll leave updates on how I'm doing.  My surgery is at 0800 tomorrow, but I have to be there at 0600.  Wish me luck!  

Going, Going, GONE!

Remember the ridiculous chia pet commercials?  Well, my furry kinda looks like a chia pet in this pic.  What he has on his back, ladies and gents, is a tray of wheatgrass!  I buy wheatgrass about once every five days, and drink at least two ounces a day.  It's not necessarily the best tasting stuff in the world BUT I feel it's necessary to help keep me in remission and stay healthy!  It has this little sweet taste to it, which makes me shudder.  I started drinking wheatgrass daily about two months ago.  Up to that point I only drank wheatgrass once every now and then.  I feel that wheatgrass will help keep me in remission now that I am off the 'riods.  You can check out the benefits of wheatgrass here, here, and here.  I'll have a "Wheatgrass 101" blog entry coming soon!

Yes, that's right, I'm now COMPLETELY OFF the prednisone.  I took my last steroid pill on Tuesday, and have been suffering from withdrawal symptoms since Wednesday evening.  It started with a pretty bad headache on Wednesday night which led to me not being able to sleep due to the severity of the headache.  On Thursday morning my headache was accompanied by nausea and fatigue. Today I have a faint headache, but the nausea and fatigue are gone.  I rode easy today, only for about 25 minutes, which isn't very much, but enough to keep me somewhat sane.  I have to keep riding to stay mentally, spiritually, and physically strong.  If, for some reason, I get sick again I'm going to keep riding, even if it's on the damn trainer.

It's going to be an interesting next couple of weeks as in the past I have always relapsed 3-6 weeks after coming off the 'roids.  Not this time though.  I'm stress free, my hubby will be home soon, I'm the strongest I've been since being diagnosed, I'm eating very well, I'm with my fam, and drinking at least 2 ounces of wheatgrass daily.  Oh, and I'm starting my Xango drink on Sunday too!  I feel confident that I won't relapse, but only time will tell.  

I'll keep y'all updated, but until then, enjoy this ridiculous commercial!

Happy Birthday Dear Doggie...

First off, I want to thank My Love Bug for coming through yet again!  The man is in the middle of nowhere (literally) and still managed to send me flowers (a flower cake to be exact) for my bday (which was Sunday).  I know you won't get to see this until you get home, but thank you Love Bug!

On Saturday we celebrated mine, Caesar's (my beast in the pic above) and my seester's dog Giovanni's birthdays. For those of you that think we're weird let me say that this is the FIRST time we've had a bday party for the dogs.  I'd say a good half of you have done the same thing but are too ashamed to admit it!  My sis also gave us all a shout out on her myspace page so check it out at: www.myspace.com/mariafrench

This is a pic of the doggie bday cake(simmer down PETA lovers, it's fake chocolate icing)!

On a more serious note, I tapered down to 5mg of prednisone on Tuesday.  This is a big deal because I will fully be off the 'roids next Tuesday (the 26th).  For the past two years I have been battling a vicious cycle with tapering because I have always relapsed 3-6 weeks after coming off the 'roids.  I am confident this will not happen again, but can definitely use your thoughts and prayers, so keep me in mind!  The vicious cycle that has occurred for the past two years will be broken this time, I know it!  I will keep my blog updated with my progress!  I think the lack of stress/being around family/riding my bike is going to help me break this vicious cycle.  I'm hoping for the best...

Lastly, here is a pic of Tom and myself after a painful ride early Tuesday morning.  I met Tom and Paul (Paul will be in a later pic I'm sure) last Tuesday while riding.  To make a long story short, I was riding by myself when Tom and Paul zoomed by.  Tom yelled at me to draft so I grabbed onto Paul's wheel (he was on Tom's wheel) and we cruised for a little while.  I met up with them this past Tuesday and they handed me my ass, but it was an awesome, painful ride!  Paul broke his crank while climbing so Tom and I had to pace-line back to get the car so Paul wouldn't cook in the hot AZ sun! Tom pushed me to my limits and I was able to see how strong I've gotten over the past two months(thanx for not letting me wuss out Tom!).  I was in some serious pain but know the only way to get faster is to suffer!  Thanx guys!  I look forward to our ride next Tuesday!  I wish I was staying in the area longer, Tom could seriously get me ready for race season next year.  

I also posted my first write up for the Vanderkitten Blog!  I'm SO EXCITED about this opportunity!  More to come later...

YEAH Buddy!!!

I’ve been in remission for two months!  What can I say, I’ve been feeling great!  AND something HUGE happened to me this week…talk about a dream come true!  J-dub and a few other peeps know what I’m talking about…GET BETTER J-DUB!  I’ll blog about it when the time is right!  All I have to say is, y’all better check out the Vanderkitten website.  J-dub introducted me to Vanderkitten via Mandy’s blog, and the second I went to the VK website I was hooked!  Their clothing is catchy and HOT, and their jerseys are definitely the  HOTTEST I've ever seen.  I have never, EVER seen such awesome cycling clothing for women.  Vanderkitten is doing GREAT things for women’s cycling.  VK shows women that it is OK to be hot, sassy, feisty, and cute all while being CRAZY FAST on the bike.  Check out their website and their team standings.  These women kick ass.  More to come later…

 I was able to talk to my hubby this week for the first time in over a month.  That was nice, just a little over two months before he’ll be home!  YEAH!

 I did my first three hour ride in quite a while this past week.  It was awesome!  I’ve learned that it takes my body a few days to recover from a long ride like that.  That’s okay though, at least I was able to do it!  It was all rolling (I LOVE THE HILLS OUT HERE), and I felt pretty strong.  It’s been a long time since I’ve been on such a challenging ride.  I would say the last ride I’ve had like this was when I was a junior at the boat school.  On Friday a Ukranian guy I met while riding asked me if I had trouble getting up in the morning to ride (you have to get up between 0430-0500 to be on the road by 0530 to beat the heat out here).  I told him that getting up early hasn’t been an issue for me.  I am excited to ride.  I love riding and usually can’t wait to get to bed the night before so I can ride the following morning.  I know what it’s like to not be able to ride due to illness, and I’m not taking any chances or taking riding for granted.  Nope, never take riding for granted.  I take every opportunity to ride and savor every minute of it.  Nothing comes close to cycling.  Nothing.  Call me obsessive, but if you’re not a cyclist, you won’t understand.

 It’s awesome seeing how strong I’ve gotten over the past two months.  I started out only being able to spin easy for thirty minutes at a time, to struggling ridiculously on the hills (and I'm a climber), to now crushing the hills and going on three hour rides!  I am thankful for this, and continue to thank God for my blessings!  My body may not recover as quickly as it used too before getting sick, but hell, I’ll be wiped out for three days…it’s worth the beauty of a LONG HILLY ride!  If you’re wondering what my body does after a long ride, I’ll tell you.  The afternoon after a long ride I usually end up pooing a lil bit of mucous and a lil bit of blood, nothing to be too alarmed over (considering the amount of blood I’ve lost in the past while pooing).  To counter this I take lots of naps (it took me a while to get used to sleeping in the middle of the day), drink my wheatgrass, and eat well.  But the key to it all is plenty of rest.  It’s taken me over two years to listen to my body, but I think I’ve (almost) got it figured out.  I haven’t been able to go on such challenging long rides since getting diagnosed, so this is still a learning process for me.  I’m figuring it out though, and will hopefully cause some serious pain to chicks in WA State next year during racing season!  YEAH BUDDY!

We're Movin'!!!

It's official folks!  Matt and I are moving to WA State!  We are both extremely excited!   The cycling out there rocks, it is a great outdoorsy state, there are plenty of organic crazy peeps there, and the biggest Nordstrom in the country is in Seattle (not to mention there is a Chanel boutique inside the Nordstrom)!  Yes!  I mean, seriously, it doesn't get any better than this!  I'm totally stoked.  Whoo-hoo!!  =-)~ 

Whoa-Whoa-Wee-Wow

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!

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 René' 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.

 

 

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...

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!!

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. =-)~

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.

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! =-)~