Gut Tales

The Inconvenient Truth

2011-07-29T22:15:00.000-07:00

Life has been quite a roller coaster of relentless emotions since my last blog entry. I can't believe it's been almost a year. So much has happened. I've grown more than I could ever imagine. But it took me hitting rock bottom to get there.

I guess I'll start from the beginning...

After leaving the hospital last September my body was in complete shock. My joints were extremely swollen, full of fluid and creaky, reminiscent of an 80 year old body, not that of a 29 year old. My body ached. I whimpered on the drive home. My body was revolting because of the swift prednisone taper my doc put me on(going from 80mg of Solu-Medrol [intravenous steroids] to 30mg of oral prednisone in 8 days). I was miserable but appreciated the quick taper. I swore I would never go on prednisone again after 2008, and held out as long as I could in 2010, but ultimately it was the prednisone that saved both my life and my colon last September.

Two weeks post hospitalization my doc asked me how I was doing (I had to see him weekly for about a month and a half). I said my colon was happy, but the rest of my body hurt. It felt much older than 29. It was during this time that I told myself I would never go on prednisone again. To me, the side effects just weren't worth it. And still aren't. I have no plans on ever putting that drug in my veins or mouth again.

After about a month and a half my joints returned to normal with the exception of my hands. To this day I still occasionally feel like I have jugs in my hands. It's a weird "full" feeling that I can't quite describe. Occasionally, on cloudy days, random finger joints will ache, though that is slowly going away. Let me remind you, it's been almost a year. My ortho doc said it will take time. I'm still being optimistic and know that it will all work out.

A combination of an achy body and unhappy hands sent me into my first bout of darkness. I was so frustrated. I wondered why the rest of my body should suffer simply to save my colon. I was pissed. I mean, I did EVERYTHING right. I tried so many damn diets, ate as bland as possible, didn't drink anything but water and freshly juiced vegetable and fruit drinks, slept between 8-10 hours a day, and my colon still flared. I had essentially let my entire life, and that of my husband, revolve around my freakin colon since 2006. I felt so damn powerless. I had no control, even after doing everything right.

These feelings bred bitterness. And anger. I swore that if my colon started to flare again, it was coming out. I began to despise it. I was done living my life around it. I felt that it had robbed me of my career, my self confidence, my athletic ability, my health, and at times, my future. I felt left behind. It seemed that everybody around me was progressing and I was somehow stuck in a stagnant cloud, not able to escape. I wanted to scream, and at times, I did.

In late December I hit rock bottom. I lost it. I just couldn't take it anymore. The bitterness, anger, fear, jealousy, uncertainty, and sadness had gotten the best of me. I curled into a ball on the couch and screamed, cried, and kicked. I just could not take it anymore. My wonderful husband curled around me and tried to calm me down. Looking back, I feel for him as he probably thought he was going to have to drop me off at the looney bin.

During the darker times of this past year (most notably December) I found solace, peace, and God in the mountains of Washington State. I also learned the biggest underlying struggle I have had in my life since being diagnosed in 2006.

It started when I told my husband that I wanted to summit Rainier for my 30th birthday and summit Everest for my 40th. He then told me to take it one step at a time, but knew deep down that my stubborn nature was yet again taking me to the extreme. We'd been through this several times with cycling. I had such lofty goals that, due to illness, I could never quite achieve because my body was not ready for intense racing. But, as usual, I always had to push the limits, only to fall short time and time again. He did not want to go through this same vicious cycle with mountaineering.

It wasn't until we were at dinner with our good friends, Steve and Janelle, that the inconvenient truth came to light. I told Steve and Janelle of my summit goals, but they knew the true driving force behind it. Eloquently put, Steve said: "Achieving the impossible is not going to make you happy." And I began to cry as a great realization released itself from the depths of my inner being.

It now all made sense.

Since being diagnosed in 2006 I had pushed myself, to a fault, to achieve things that were far fetched in the hopes that I could prove to myself that Ulcerative Colitis did not run my life. I felt that if I could win a bike race or summit numerous mountains than I would validate myself as an individual. What I failed to realize is that those that matter most to me do not care about any of those things, they just want me to be happy and healthy and not waste my time chasing "dreams" fueled by misguided emotions.

I am forever indebted to Steve and Janelle for this very critical turning point in my life. I would still like to summit numerous mountains, but instead of being so focused on the summit, I want to enjoy every step of the journey. If it happens, it happens. If it doesn't, it doesn't. Regardless, I'll embark on each journey for the right reasons.

Sometimes the truth hurts, but it changes each of us for the better.

Climbing my favorite mountain this winter!!

Home Tomorrow!!

2010-09-13T15:28:00.006-07:00

I received the excellent news that I will be going home tomorrow!!

Today my doc switched me from the liquid diet to the low fiber-low residual diet...so we'll see how that goes! As long as I tolerate the solid food, I'll be outta here!

My labs have been stable the past couple of days, my blood count has stabilized, my protein levels are back to normal (protein was pretty much non-existent in my body when I arrived), and I seem to be nourished enough to be able to go home! I've had a few visits from the nutritionist and will pretty much be on the low fiber-low residual diet for the next couple of weeks before introducing more exotic foods into my diet.

I do have to say that the all liquid diet wasn't so bad. This hospital has an amazing menu (everything is ordered a la carte, which totally rocks). So, I had all the variety of broths, jellos, non-sweetened apple juice, and gummy bears (YES, gummy bears are part of a liquid diet) that I could have, whenever I wanted it!

I was also switched from IV steroids (Solu-Medrol) to oral steroids (Prednisone) yesterday. I'm still on Total Parental Nutrition (TPN) and still have my PICC line in, but all that should be changing tomorrow! Hopefully I'll be able to leave tomorrow evening, once I've been properly tapered off of the TPN and my PICC line has been removed. I'll keep you posted!!

The below picture shows how the PICC line and TPN work together (the PICC line has been the best thing ever, considering I haven't been pricked with a needle since getting the PICC line put in on Tuesday evening)!!

I also just ate my first solid meal! It consisted of sour dough bread, turkey breast (I was shocked that it was REAL turkey, like, Thanksgiving turkey slices), low-fat mayo and swiss cheese. I also ate a scoop of mashed potatoes w/ a little bit of poultry gravy and a few scoops of white rice. It tasted absolutely amazing!

Unveiling my first solid meal!! Yum!!

Anyway, I'll definitely let you all know when I'm home!! Again, thank you ALL for your kind words, support and encouragement! It has helped Matt and I more than you'll ever know!!

Below are random pics of my hospital stay...

TPN and the huge triple pump giving me my nutrition!

TPN up close...the white bag is my fats, the yellow is all my nutrients/electrolytes/etc, and the clear is my fluids

Day view of downtown Seattle from my first room

Night view of downtown Seattle from my first room

Mt Rainier view from my second room

Busting free on Sunday afternoon to get some sun!! I almost got stuck in the rotating door!!

Flooded In Light

2010-09-11T16:02:00.000-07:00

I would first like to start off by thanking everybody for their encouraging posts on facebook, encouraging phone calls, texts, and emails. You are each individually helping me find the strength and courage I need to continue down this difficult path.

A little background for those of you who don't know the series of events that has happened over the past couple of days: On Tuesday afternoon I was hospitalized by my gastroenterologist due to severe malnutrition and an uncontrollable bloody flare. I was having roughly 20 extremely crampy, bloody, bowel movements a day. I was losing a bit of blood and there wasn't any indication that it was going to get better.

The course of events that brought me to this point...

As I have stated on some of my earlier posts this year, I started flaring lightly towards the end of January. The light flare was controlled by the suppository canasa, as all symptoms would cease when the suppository was used. I was on a thirty day cycle with the suppository, and every time I stopped, the light symptoms would return. Because this happened twice I was instructed to stay on the suppositories (in conjunction with the Remicade Infusions and daily Lialda use). This routine worked great until I got food poisoning from an undercooked piece of chicken in May. We have been unable to get complete control of the flare ever since.

In the meantime, the Remicade was becoming less and less effective every time I got an infusion (I have received a total of 3 infusions for 2010). Remicade is supposed to last for two months, but mine went from lasting 8 weeks every time I got it in 2009, down to 3 weeks at it's weakest this year. This was not good enough for me, as I've never been one-hundred percent comfy taking a biologic.

So, Remicade, this pic is for you, from me, with love:

Remicade is made out of mouse antibodies, hence the pic

Ah, how I digress.

My curent update...

I had numerous tests done from hospitalization day one, and based off of the results have been given the most fantastic news one could possibly receive in my situation. I mean, regardless of what happens from this point forward, nothing can take the joy, faith, and hope I have after receiving this news from both the colorectal surgeon and my gastro doc.

All of my tests (including the colonoscopy I received on Thursday) points towards colitis NOT crohn's. This is HUGE for me. HUGE! I cannot quite put into words the genuine huge sigh of relief I made when I found this news out. I'm still on cloud nine over it...and that is no over-exaggeration.

For those of you not too familiar with the differences, I'll give you a little background. Crohn's Disease and Ulcerative Colitis are chronic illnesses, both of which are classified as Irritable Bowel Disease. This is completely different from Irritable Bowel Syndrome.

Crohn's Disease can affect your entire digestive tract, from your espophagus all the way down to your anus. Colitis, on the other hand, is restricted solely to your large intestine. They are both nasty illnesses and are often misdiagnosed as the other since they both have similar symptoms.

Another major difference between the two are, colitis can be "cured," so to speak, if the entire colon is removed. Because one cannot live without the entire digestive tract, surgery, though often necessary for crohn's patients, often gives temporary but not permanent relief.

So, you can understand my position being absolutely ecstatic about everything pointing towards colitis. Like I said, even if the colon may have to go in the future, I can deal with that. So I poop in a bag, who cares. My friend Adrienne, my hubby Matt, and I already have plans for bags with some supa haute couture decorations, should that time come. I'm one to always try to find the positives in the negatives, and, well, this will definitely keep me rolling. Should the time come, you all will have a visual on what we've been talking about, as I'll proudly bare all (c'mon now, y'all know I'm not the shy type)!!

My current course of action is now this:

My colonoscopy showed that though my colon is extremely diseased, it is starting to regenerate its tissues, cells, skin, etc. It is trying to heal, and we believe this is due to the steroids that I am getting through IV. Steroids have always put me in remission in the past, but should not be used long term (check my old posts to see what happens when you're on the "juice" for long periods of time). When I was getting treated in Virginia the docs used steroids as a crutch, and should have never had me on them that long (on and off for 2.5 years). My super awesome gastro doc here in WA is only putting me on IV steroids for a week, and that's it. And that, my friends, is when the true test begins. I was expecting the steroids to work, but what will happen when I'm off of them? We shall all find out together.

My doc is hoping that once I'm off the steroids the meds Lialda and Azathioprine will pick up where the steroids left off and help bring my colon back to health. If they do not, then my colon will come out. As of now I still have a 50/50 chance of getting my colon removed. We really won't know if it's going to happen until a few days to a few weeks once I'm off the IV steroids (which I get my last dosage of steroids on Tuesday). The docs, myself, nor anybody on this earth has control on what will happen next. It is all truly in God's hands. That is how it is meant to be, and I am 100% okay with that.

I want you all to know that I am at peace with the fact that my colon may have to be removed. I am a realist, and this is what happens when you have a severe form of IBD. I am OK with it. Life moves on, and will move in the right direction.

This year has been rough for me b/c I have had symptoms for pretty much the entire year of 2010. It wasn't too bad until May, when my quality of life changed dramatically as I often times had trouble controlling my bowels. Every time I got into a car I was terrified of having an accident. To help calm my anxiety (which I'd never suffered from before), I made a makeshift toilet and put it in my car. I'm quite proud of my toilet really. I cut off 2/3rds of a paper grocery bag and placed a garbage bag inside. It wasn't perfect, but it definitely would have gotten the job done! I almost had to use it once, in fact I had my pants down to my ankles in public, but I'll save that story for another time!

Matt and I went to Hawaii with my parents in late June and I always had the underlying thought in my mind of having an accident. Activities were tailored to bathroom availability. I had to drastically limit what I ate to try and counter any type of possible bowel urge. Beach time was somewhat stressful. I mean, who wants to poop in the gorgeous hawaiian water? I didn't want to be responsible for poisoned fish! Sheesh! In all seriousness though, it was nice getting some sun and spending time with family, but definitely wasn't the worry free, relaxing Hawaiin vacation that I was anticipating.

The only relief I got in between bouts was the small blanket of time the Remicade Infusions got me through (which did get me through a quick trip to Vegas, too bad I hadn't figured it out yet when we went to Hawaii).

Fast forward to this past Tuesday, where I had not left my house for almost three weeks with very few exceptions. My husband wanted to take me out for my birthday (August 17th) and I didn't want to go due to fear of having to constantly run to the bathroom at the restaurant. It was a depressing day because not only did I have absolutely no control of what was going on with my body, but I did not even recognize my own reflection in the mirror after showering to go to my birthday dinner. The girl staring back at me in the mirror was not a face I recognized.

The only place I made a priority to go to was church, because I needed the spiritual nourishment of communion. Without faith, hope, and love we have nothing. I have kept my faith through the darkest hours, and have kept my faith when I've been well. If this disease has taught me anything, it is to never, ever give up on faith.

Once the more severe symptoms came in May I started to starve myself in order to get day to day things done. Grocery store, starve. Out to dinner that night, eat minimally in the morning and then starve. Doctors visit in Seattle, starve. That was the only way to guarantee that I would not have an accident. And even then, I was scared one might "sneak out." If I knew I was going somewhere I would either eat as minimally as I could or not eat at all, depending on how severe the symptoms were at the time and what time the scheduled event was. That, my friends, got old REALLY fast. I couldn't keep it up anymore. It was breaking me, both physically and mentally. It was really trying to break my spirit, but I didn't let it...

I have never struggled so much emotionally as I have since May. But, I'm in good hands now. And it has now come to an end. One way or another, I will get well, with or without my colon. It's all in God's hands now, and whatever the outcome may be, I will accept and welcome it with open arms.

"Head Full of Doubt / Road Full of Promise" by The Avette Brothers has been my theme song through this ordeal. If you haven't heard it, download it. It's a good one!

I will keep you all updated via my blog as I hear anything else! It took me a while to write this entry b/c I often get tired and have to take several breaks in between. However, now that all the pertinent info is out I'll update much more often with quick little posts!! Again, thank you ALL for your support. It means SO MUCH to both Matt and I! Until next time...

Stripped

2010-07-19T20:45:00.010-07:00

A lot has happened and changed since my last blog entry. As it turns out, yes, it was a flare that started toward the end of January (with very mild symptoms), exacerbated during the food poisoning incident in May, and never really went away.

My last blog entry proved to be false. It wasn't just food poisoning that caused the awful reaction in May. It was food poisoning in conjunction with a flare. The flare was masked for three weeks after my Remicade Infusion, which left me (and my doc), to believe it was solely food poisoning. This proved false when I started having symptoms during my Hawaii vacation, exactly three weeks after my Infusion.

I have not blogged as it has taken me time to gather my emotions, thoughts, and spiritual being as a whole. This past month has been a real challenge on me physically, mentally and emotionally and has left me feeling stripped down to solely flesh and bone and thrown to the wolves for consumption. Thanks to supportive family and friends I am slowly starting to put the pieces back together.

As I figure out how to put this past month into words, I will leave you with an article written about me close to my one year remission date last November. The author of the article, David Longdon, was looking for cyclists with a unique story to tell. I was one that made the cut.

This article can be found at: http://blog.seattlepi.com/velocity/archives/184169.asp

New blog entry coming soon...

Twas Never A Flare At All

2010-06-06T18:31:00.011-07:00

Hooray!! Lucky for me my symptoms completely went away on Monday (5/31)! I was thrilled. I got up, had normal poos (yay) and was even able to ride my bike! I was definitely looking forward to my docs appointment the following day and had tons of questions for him. The most important question was why I started flaring at all. In my mind there was absolutely no reason to flare to such a severe extent while on the mouse juice. I wondered if the medicine was becoming ineffective and what our next step would be if that was indeed the case.

Well, my docs appointment couldn't have gone better. In fact, it went so well I was shocked b/c I totally wasn't expecting his diagnosis. I learned that what I thought was a flare was actually a bad case of food poisoning from an undercooked piece of chicken. My doc never once called the near awful week of uncontrollable bloody bowel movements a flare. He explained that because my system is overly sensitive it reacted the way it did to fight off the food poisoning. He said that my body wouldn't have gone from 0-100 (no symptoms to full blown flare) overnight. He also said that if it were a true flare the symptoms wouldn't have disappeared so quickly. In total, it lasted almost an entire week. A seriously long week, but in the past nonetheless.

Note: My husband was also sickened by the undercooked piece of chicken. He had lots of diarrhea the following day but was still well enough to race (he's an animal). His "normal" system was able to fight off the virus in a day. My system, well, you know the story.

We are leaving my meds the same at the moment (Remicade once every two months, two Lialda pills a day, and continual use of the suppositories). Because I have stabilized I can now start weening off the suppositories, so I am now on the "every other day" regiment. Whatever, I don't mind it. Anything to prevent a true flare.

Though I am now stable and "back to normal" per say, I am still picking up the emotional debris of the scary food poisoning. I can't describe the emotional roller coaster I went through. I hit rock bottom. I cried a couple times a day. I couldn't figure it out. I almost let myself feel sorry for myself, but I reminded myself that I am still very much alive and that is all that matters.

I struggled with my "normal" life being stripped from me. I struggled with the fact that I couldn't just jump in the car and drive, that I wasn't riding my bike, and that ultimately food was my enemy. Again.

I then replayed in my mind over and over about how I had gotten so complacent with my food intake. I cringe when I look at my food intake that I blogged about last November. I cringed when I thought of my cookie, pie, cake, heavy sauce holiday food binges. Any poor food choice that I had made from last summer to that moment I replayed in my mind. And I felt so stupid. How could I? Why did I? How foolish of me to get so over-confident.

I guess you could say I blamed myself for flaring. I blamed myself for ignoring what I'd known all along about my inner self. I blamed myself for being foolish enough to think I could work a stressful job. I disgustingly laughed at myself for thinking I was well enough to come off of all meds.

I tore myself to shreds thinking about all the "bad decisions" I had made. I tore myself to shreds until all that was left was my inner core, exposed, and frightened. It felt as though I was barely hanging on and I no longer knew who I was. Uncertainty is a bi**.

The mind is a brutal thing, and I was my own worst critic.

Like I said in my last entry, Cindy helped me start to put the pieces together. I meditated while getting my mouse juice infusion (before falling asleep), meditating that the ulcerations were being pulled from my intestines and that the freshly pulled open wounds were being waxed over by healthy mucosa. As the cool, healthy mucosa was soothing the open wounds it was also sealing them with intestinal goodness, causing them to be scar free.

I made the decision at that point to be very strict with my diet once I again found health and stability. If anything like this ever happened again I did not want to blame myself and strip myself apart. I would want to know that I did everything I could.

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Since recovering from food poisoning and going back into a state of remission I am much more thankful for my medication and doctor. Literally the week of the food poisoning incident I was telling my husband how I knew I was ready to come off the Remicade and how my doc must have it all wrong. In my mind I didn't need it anymore. I can't tell you how quickly I recanted that thought process once sh** hit the fan. I couldn't wait for my infusion. I needed it. It was my first Remicade Infusion that I absolutely couldn't wait for.

This past weekend I told my hubby that I wasn't going to fight with the fact that my body needs the Remicade. I told him that I accept that I need the meds, and that if anything, this incident proved how effective they are. I was putting the struggle to bed. He softly smiled as in saying, "We'll see."

As for my food intake...

Six weeks before this incident happened I was incorporating more raw foods into my diet. I was about 70% raw, usually only eating a cooked meal for dinner. My food poisoning incident took place during my non-raw dinner time, in which I was sickened by an accidental undercooked piece of chicken.

I mostly survived on smoothies and vegetable drinks during the week my body was trying to fight off the food poisoning. I seriously believe that these raw juices/smoothies helped my body fight off the awful infection. Though my life was miserable at the time, I did avoid hospitalization and was able to fight off the food poisoning w/ no antibiotics.

I have continued to be strict with my diet as I refuse to fall back into a nonchalant stance when it comes to food. This week I will blog my food intake so you can see my food choices (and see how drastically different it is from last November). Incorporating more raw foods has been working out magnificently as my poos have been formed and look the best they've looked in months. It's exciting!! If my last statement worries your, remember, I'm a lil' (or A LOT) different...

I now feel as though I have picked up the emotional debris, and am ready to fully move forward. As I move forward I will not let the fear of the past control me, but I will also not forget the past so that mistakes will not be repeated. As the saying goes, what doesn't kill you makes you stronger...

Awake My Soul

2010-05-27T22:55:00.009-07:00

Last Saturday I went into a full blown flare. I went from 0-100 with absolutely no warning. My husband had a stage race last weekend about an hour and a half from our house. As we were driving up to the race I almost had an accident and barely made it into the Albertsons (I was just thankful they were open at 0630 in the morning). The second bout came about 20 minutes later. I ran into a mom and pop breakfast place and used their bathroom. As a token of my appreciation I bought coffee, though I don't drink coffee. My body then went dormant until after lunch, where I almost had accident number three. I was briskly walking towards the port-a-potties (at bike races they have a plethora of port-a-potties for the racers). After quickly realizing I wasn't going to make it I ran into this local bar, instantly being out of place. You could have heard a pin drop when I walked into that place. The bartender must have seen the distressed look on my face and pointed me to the bathroom. Phew, I dodged the bullet a third time. Not cool. All in all, I probably went about 10 times that Saturday. Totally didn't see that coming.

Fast forward to Sunday. My husband had the final race that day, which was a road race with a really nasty climb. I really wanted to be there to support him and our team, so I decided that the ONLY way I was going to make it through the day incident free was to not eat or drink until I was close enough to home to be "safe." Sunday morning we again woke up early to make the hour and a half drive. My anxiety was high, and my palms were sweaty as we began the drive. I was, in short, terrified. I was also prepared to pull over on the side of the road and poo if I had too. We ended up stopping four times on our way to the race, but luckily for me, this completely purged my system. I was regretting eating dinner the night before each time we stopped, but was thankful that I had gotten everything out. I did not eat or drink anything from 0530am to 330pm. It was too risky. Once my system was purged I was golden until dinner time. Then the symptoms started up, totally out of control. Watching the race was definitely worth the small sacrifice of food or drink. My hubby and the team rocked and I would have done it over again in a heartbeat.

On Monday I again did not consume any food or drink until late afternoon. I had to go to the grocery store and had an appointment in the afternoon, so couldn't risk it. After I had my uncontrollable bowel movements in the morning and was confident there was nothing else in my system that would threaten an attack, I went to the grocery store. When I got home from the grocery store I juiced some much needed wheatgrass and waited to take anything else in by mouth until after my appointment. I went to my appointment, came home and ate, and awoke the beast. I averaged roughly 20 uncontrollable bowel movements on Monday.

On a positive note, I called my doc on Monday and he put me back on my suppositories (which I use at night before bedtime). Due to the suppository use on Monday night, my symptoms were cut in half on Tuesday, averaging about 10 episodes. On the not so plus side, my anus was (and still is) so cut up that it hurt like no other to stick the "silver bullet" up there. Yowza!! But I am willing do whatever it takes to calm my symptoms. Anal fissures got nothin' on me.

Also on Tuesday my cousin flew in and I was forced to have the shuttle bring him to my house (we live about 1.25 hours from the airport). I couldn't risk it, and boy was I glad I made that decision. Tuesday morning started out GREAT. I only poo'ed twice and thought that I was on the up and up. Well, come early afternoon it was a completely different story and I was running to the bathroom quite frequently. Had I chosen to go to the airport the results would have been disastrous. Frustrating. I was so frustrated I couldn't even drive to the airport to get my cousin. It was demoralizing and extremely emotional for me.

By Tuesday evening I had had a few breakdowns. I was an emotional wreck. A "hot mess" as I like to call it. I didn't have any warning that this flare up was coming. This beast reared its head out of nowhere and was getting the best of me. I felt kicked, beat up, destroyed, hopeless. I tried to pick myself up, but it was hard. I had gone about a year and a half in remission, what the freak happened? And now it was uncontrollable? I couldn't even drive or go anywhere w/out being paranoid I wouldn't get to a bathroom on time? Ak.

Wednesday definitely wasn't much better and I was extremely excited about getting my Remicade Infusion the next day, Thursday(today).

The thought about being excited about my Remicade Infusion was bittersweet to me. Two weeks prior I was talking to my husband about coming off the Remicade. I stressed how I didn't like being on it and that I thought my body was stable enough, or will be stable enough in the near future, to come off of the meds. Oh how wrong I was (again).

Today I woke up and was thrilled I was getting my Mouse Juice (Remicade). I hoped that it would be just what I needed, in addition to the suppositories and my daily dose of Lialda, to completely kick me into remission. I did not eat or drink anything this morning as I knew we were going to make the long haul to Seattle. I only had to stop once while driving (thank goodness). When I got to the Infusion Center I was absolutely thrilled to find out that Cindy was going to be my nurse. From the waiting room I heard her say my name and sparked up. I was definitely going to be in good hands. Because I was severely dehydrated I was a little skeptical about my veins being readily available for the IV. Cindy got it the first try. She rocks. She also called my doc to let him know that she recommended hydration via IV. Like I said, she rocks. And cares. And is awesome. I broke down when talking to her, as I was still in a very fragile emotional state this morning. I was overwhelmed, delicate, and felt like I was, in a way, rolling over and playing dead. How could I have let this happen?

When she started talking to me it felt like a million pound brick was released from my inner being. She reminded me I did nothing to cause this. She also knew that I was up to something that didn't necessarily fit with what my body wanted. And she was right. For the past few months I had seriously considered going to Law School. Everything in my gut and inner being told me that being a litigator was definitely not the right fit for me. But I persisted. Maybe I felt insignificant amongst other young professionals. Perhaps I was allowing myself to once again fall into the mainstream American view that to be successful and important in life you must have an important job, be the number one competitor, and make lots of money. If you can win the pissing contest as far as importance goes than you're a success, right?

Not so.

Cindy grounded me and encouraged me to let the "Type A" part of my life go. And she's right. And I've known this for a long, long time...I just didn't want to accept it. Every time I consider going back to the Intelligence Community, getting a Masters Degree, or going to Law School, my body tells me something different. And deep down I knew that none of those things were the best fit for me. I just didn't want to accept it.

I felt a deep calling for yoga, meditation, and writing. This all just seemed right for me, but for some reason I was unwilling to embrace the obvious. I was unwilling to let go of my old career and old life. I felt strange around peers. I was becoming what I used to make fun of. I sometimes felt weird and out of place. So, I tried to pursue the normal mainstream life. Or kept getting ridiculous ideas about going back to that type of lifestyle. I can now attest, after this experience, I have put that part of me to bed. Perhaps my body was telling me that enough was enough. My inner being was telling me to embrace who I was meant to be and not be ashamed of my not so mainstream lifestyle.

I now accept and embrace the fact that I'm just, well, different.

Derailed

2010-05-06T19:53:00.008-07:00

It's been an interesting past couple of months. First off, I want to start out by saying I have truly missed blogging. I know I have been a sporadic blogger, failing to have any type of consistency. I have learned that, in order for me to stay sane and keep a grip on my life, I need to be consistent with my blogging. So much has happened since my last blog entry five months ago (ouch). Now, where to start...

I made my one year remission date on Thanksgiving day. It felt great. I had been, so it seemed, "normal" for an entire year. To explain my current derailment I must go back to what life was like when I first went into remission, on November 26th 2008.

Every morning I woke up I would be paranoid that I would poo blood. EVERY morning. I was scared that my true remission (w/out prednisone) would be short lived. This went on for six months. I was in remission, but trapped in my own fear of relapsing. Being in remission felt so good, I couldn't imagine going back to uncontrollable bowel movements. As is the normal course of things, I slowly started becoming less and less paranoid. I started getting bolder w/ food, and started eating things that I normally wouldn't touch w/ a ten foot pole (heavy cream recipes/fried fatty foods/desserts). I was still consistently eating my brown rice bread, baking my chicken or fish lunches, and consuming my goat products, but added in foods that, if I was flaring, I wouldn't dare eat. Heck, the first four months of my remission I was paranoid to eat anything bad. How things change when life seems somewhat normal.

I feel that my true derailment came during Christmas 2009. By this point I had been in remission for a year and a month, and, naturally, felt untouchable. BIG mistake. This was perhaps the beginning of the end. I ate so SO many Christmas cookies, desserts, heavy cream food dishes, high fat appetizers/entrees. It was nuts. My food intake during Christmas 2008 and Christmas 2009 was like night and day. Literally. But, after a year of remission, I thought I was over the whole Crohn's thing (though I was "inconveniently" reminded of it during my Remicade infusions once every two months).

In fact, I was so confident that I decided it was time for me to come off of Remicade. I didn't think I needed it. I had been stable for a year. I brought this idea up to my doc, and he politely told me that it wasn't going to happen and that plenty of Crohn's patients have been on Remicade for years because their bodies needed it. I was a little angry and thought he was wrong. In my mind, I didn't need it anymore. I decided that I was going to bring it up to him again in a few months, and if he said no, I was going to shop around for a new doc. Little did I know how right he was.

In mid January, Crohn's symptoms returned. It started w/ a puss like poo w/ light bleeding. The first time this happened I pushed it off. After that, it was touch and go. Sometimes I would have bloody poo, other times I wouldn't. This "touch and go" made it easier for me to justify to myself that I was not going into a flare. This went on for a few weeks. Well, the final straw was in late January. I ate baked seafood au gratin, and upon finishing dinner, had to run to the bathroom. Run to the bathroom as in if there wasn't a bathroom readily available I would have had an accident. Puss and blood was present, and that's all that was present. There was no other substance (poo). I've been around the block long enough to know that puss and blood when accompanied with poo are bad, but when alone, is worse. I called my doc the very next day and scheduled an appointment for the following day.

I explained to my doc what happened and he decided that he wanted to do a colonoscopy since it had been a few years since my last one. He had also never scoped me himself, as they were all done in Virginia, previous to my move to Washington. We scheduled my colonoscopy for the next week, and I got my Remicade Infusion a week early. The day after my infusion my symptoms calmed down. There goes my overconfident theory of getting off the Remicade. Yes, my seasoned doctor, Harvard grad, was right. But of course he was, he's been doing this for years.

At this point, I was thrown into an abyss of emotions. I wanted to scream, kick, cry, pull my hair out, whatever would evict the frustration, sadness, unknowingness, and fear out of my soul. This disease was back. Just when I thought I was done with it, it showed me otherwise. When I thought I was well enough to go back to working full time in the Intel community, it was back. When I was convinced that I could come off of the Remicade, it was back. NO NO NO. Why?

I went through a brief moment where I actually felt sorry for myself. A moment where I asked, "Why me?" And then, I quickly realized that I am blessed. I am blessed because I am alive. Blessed because I don't have cancer. Blessed because when not in remission my only issues are pooing blood and occasionally pooing myself. Life really isn't that bad. I can still ride my bike. I can feel the wind on my face. I can walk my dog. I can go out with my husband. As the late Randy Pausch stated, "We cannot change the cards we are dealt, just how we play the hand."

I accepted the fact that, though I had hoped and hoped and hoped, Crohn's was still present. It was controlled for almost a year and two months, and then decided to act up. Luckily I didn't make the rookie mistake and hope that it would just go away. I called my doc right away and got properly treated. My colonoscopy revealed that 6-8 inches of my large intestine was inflamed, but everything else looked great. That was GREAT news. The fix? A suppository!! OH BOY. Lucky, lucky me! And no, I wasn't that excited, I just thought it was kinda funny and should be interesting.

Well, there is nothing fun about the lil "silver bullet" formally known as Canasa. Oh, don't worry, there will be a blog entry dedicated to my suppository experience. It is definitely interesting...

Anyway, I was on the suppository regiment for 30 days and was having absolutely no symptoms. I swore to never fall back into an overconfident state. If my body decided to act up again, I didn't ever want to wonder, what if...

Unfortunately, three weeks after stopping my suppository regiment, I began to have another minor flare. Luckily this happened the day before an annual check-up with my doc. When I saw my doc I blamed it on a homemade chicken taco with way too much cholula sauce on it, thinking that it was the hot sauce for sure that burned my intestines up causing me to have a minor flare (talk about denial). He smiled and asked me when I took my last suppository. I told him three weeks prior, and he told me that, if the symptoms don't go away after getting my next scheduled Remicade infusion to start my suppository regiment up again. It was not the cholula filled homemade chicken taco (though I'm sure it didn't help).

To make a long story short, three weeks after getting my infusion my symptoms returned, so I am currently in the middle of a new suppository regiment. I am currently stable. Can I get a woot-woot for the magic silver bullet? Oh, just wait for the post. If it doesn't gross you out you'll be rolling on the floor laughing your ace off, guaranteed!

So, here we are. I am, again, incredibly anal about what I eat. I have accepted the fact that a career is not in my best interest at this time. I have incorporated more "raw" foods into my diet. I am getting plenty of rest. I'm doing more yoga and riding my bike. Hell, I even raced last weekend. It was incredibly painful but awesome at the same time because I have some of the best teammates one could ever hope for. Much, much more blog entries will come soon.

I've realized that I NEED to blog at least once a week to stay sane, and, hopefully help other Crohn's and Ulcerative Colitis patients along the way. Until next time...

Nothin' Fancy

2009-11-20T15:37:00.026-07:00

Here are my Wed/Thurs/Fri meals...

Wednesday

Breakfast: 2/3 slice of brown rice bread w/ organic peanut butter

Snack: 1 Banana

Lunch: 2/3 piece of baked organic chicken breast and cup of vanilla goat yogurt

Snack: 2 ounce shot of wheatgrass

Pre-Dinner Snack: Smoked Goat Cheese w/ wheat thins

Dinner: Roasted Turkey (White parts only), steamed veggies, wild rice, sour dough roll

Dessert: Yummy pear dish over one scoop of french vanilla ice cream (made by Matt's mom)

Thursday

Breakfast: Bowl of oatmeal w/ cut up banana and hint of brown sugar

Snack: 1.5 ounce shot of wheatgrass

Lunch: Baked chicken spinach salad w/ hard boiled eggs, carrot, cucumber, celery, red bell pepper

Snack: Roughly one cup of goat yogurt

Dinner: A combination of chicken nachos and thai chicken penne pasta (we went out to eat at our local brewery)

Dessert: Freshly made pumpkin cheesecake

Matt and I met up with some friends for dinner on Thursday night. I am a firm believer of ordering, within reason, what you want from the menu and not worrying about taking the "healthy" option. Truth be told, most "healthy" dishes in restaurants aren't healthy at all...including salads and fish!! Think of it this way, The Cheesecake Factory's grilled salmon ranges between 825-1,861 calories w/ 11g of fat...yowza! I guess what I'm trying to say is just enjoy your night out and get what you want (within reason)!!

Friday

Breakfast: Bowl of oatmeal with a hint of brown sugar; 1 slice of brown rice bread w/ organic crunchy peanut butter, cup of vanilla goat yogurt, and a small glass of goat milk

Lunch: Leftover baked chicken spinach salad

Snack: Veggie drink consisting of 1/2 cucumber, 1/4 beet, 2 large carrots, 2 celery stocks, 1 apple

Dinner: Cheese pizza, 4 homemade chicken wings

Dessert: Homemade brownie w/ a scoop of french vanilla icecream and a hint of raspberry sauce

I ate a larger breakfast than normal this morning because I was not going to be able to eat a snack between breakfast and lunch. Tonight Matt and I are watching Bruno for the first time with our super awesome friends Andy and Sara. Bruno wouldn't be complete without pizza and some fatty munchies. Tonight's dinner is an anomaly for me as I normally wouldn't eat any of these foods (besides the occasional cheese or veggie pizza once every now and then). I've heard crazy reviews about Bruno that has left me more than curious...

Oohh Salmon!

2009-11-17T22:22:00.009-07:00

As the week progresses you'll see that my meals get pretty uneventful. The highlight of my food intake today was eating "island style" wild coho salmon for dinner. Wild salmon has become one of the most important foods that I eat. It is incredibly healthy, contains essential fats, and also serves as an anti-inflammatory. I am, by no means, a salmon expert but do know that it has helped me get, and stay, healthy.

I only eat wild salmon. Wild salmon has a great (non-fishy) flavor and healthy red coloring to it. In my opinion, farm raised salmon tastes fishy, doesn't have the dark red coloring, and is just yucky (to me). I mean, they swim around in huge nets and eat each other's poop...yeah I really want to eat a fish that does that. And yes, I'm sure wild salmon eat poop too, but at least they're not trapped in a net and they taste wwaaayy better! Again, just my opinion...

Here's what I ate today!!

Pre-Breakfast: 2 ounce shot of Xango

Breakfast: Oatmeal w/ banana and a touch of brown sugar

Snack: 2 cups of Vanilla Goat Yogurt

Lunch: A cup of leftover pumpkin soup and Baked Chicken Spinach Salad

Snack: Vegetable Drink! This veggie drink consisted of two large carrots, 1/3 of a large beet, ginger root, and two celery stocks.

Dinner: Island Style Wild Coho Salmon. The salmon is cooked in coconut milk and chicken broth seasoned with curry powder. Leeks, cauliflower, broccoli, garlic, and onion are sauteed in the broth before the salmon is added. This is an incredibly tasty meal! You can cook whatever veggies you like in the broth...it will come out tasting great!! As an added bonus, curry+salmon is a great anti-inflammatory blend!!

Dessert: Pumpkin Pie Smoothie (Canned Organic Pumpkin Pie mix, frozen vanilla yogurt, vanilla soy milk, pure maple syrup, cinnamon, and nutmeg blended).

Snack: Vanilla Goat Yogurt

With that, I'll leave you with something random. I want to see a black bear in it's natural element before I take another vacation out of the United States. There you have it...

Brown Rice Bread/Monday Meals

2009-11-16T22:56:00.017-07:00

After being diagnosed with Crohn's I needed an alternative to whole wheat/whole grain breads, raw fruits and veggies, cow milk products, and a variety of other food products. Later on in the week I will talk about my alternatives to raw fruits and veggies, cow products, etc. Today I will give you the low down on my alternative to whole wheat/whole grain breads...

After going to the local organic store or "crazy people organic store" as some of my friends would call it, I learned that brown rice bread is not only easily digestible, but would also give me the carbohydrates I needed to sustain me for long (bike) rides, or any hard workout. So, in short, brown rice bread became my alternative to whole wheat/whole grain breads as I could no longer digest either of the two.

When I first grabbed the frozen "brick" of brown rice bread from the organic store's freezer I definitely didn't think it was going to taste very appetizing. It was seriously like grabbing a frozen, packaged brick out of the freezer. At that point, however, I didn't care. I was open to try anything and everything that would potentially work and give my body something it could digest and also the fuel it needed to get through day to day activities.

A few things I've learned about brown rice bread...

Brown Rice Bread is stored in your refrigerator once you bring it home from the market. I have found that microwaving or toasting the bread prior to consumption will make for a better tasting piece of bread. Brown rice bread is pretty bland, but again, gets the job done. I also put organic jelly or organic peanut butter on my slice of bread aka slice of "brick" to make it more tasty. Once you get used to it, the blandness sorta disappears! Now, I love it!

Two years later, I still rely on brown rice bread. I can now digest whole wheat/whole grain breads but still choose to eat a slice of brown rice bread prior to working out. It's worked for me this long, so I might as well stick with it!! So yes, I would choose a slice of brown rice bread over "normal" bread any day of the week!

Now, as promised, here is what I ate for the day:

Pre-Breakfast: 1.5 ounce shot of Xango

Breakfast: Brown Rice Bread with Organic Peanut Butter

Snack: 2 ounce shot of Wheatgrass

Pre-Lunch: 2 cups of homemade Pumpkin Soup

Lunch: Baked Organic Chicken Breast Half Sandwich. To make this sandwich I used about 2/3 of a seasoned baked organic chicken breast, one slice of 9-grain bread, Omega-3 Mayonnaise , red onion, and shredded pepper jack cheese.

Snack: Roughly 1 cup of watermelon

Dinner: Chicken Spinach Salad w/ red bell pepper, carrot, hard boiled egg, red onion, and turkey bacon. I used Red Wine Vinegar and Olive Oil as my salad dressing.

Dessert: Homemade Pumpkin Pie Smoothie

Snack: Roughly two cups of Vanilla Goat Yogurt

This definitely wasn't my "normal" diet routine while flaring. I have been in remission for almost a year and have re-introduced a number of new food items to my digestive tract. I can now handle raw fruits and veggies. Most recently is my body's ability to digest spinach. About two months ago I decided to try and introduce raw spinach back into my diet. I ate a homemade spinach salad to see how my system would react. Well, the next day, everything was great! This was a major milestone for me because, when sick, I couldn't even eat steamed spinach let alone raw spinach. My digestive tract couldn't handle it and the spinach would very painfully come out the same way it looked going in. I know that sounds kinda gross, but it is what it is. It has taken my digestive system almost a year to heal and get strong enough to handle more roughage type foods.

I still can't, however, handle normal lettuce or leafy greens. Spinach is the only green leafy veggie that my system can handle at the moment. I'll take what I can get and have decided to permanently retire "normal" lettuce and any other leafy greens besides spinach! Who needs them anyway!

If you have any questions, please feel free to email me!! Stay tuned for tomorrow!! =)

Food 101 - Revisited

2009-11-13T15:46:00.010-07:00

So, back in April I said I was going to post my daily meals for all to see due to questions I've received about my dietary restrictions, food I eat on a daily basis, etc.

Starting Monday I will post my daily meals for all to see (seriously this time)! Stay tuned for wheatgrass, goat products, and crazy vegetable drink mixes! Check back next week!

Until then, Bottoms up!

Beans, Beans, The Magical Fruit...

2009-10-17T22:09:00.012-07:00

NOT! Magical fruit my @$$. Though ginger isn't a fruit, it sure works the magic during cold/flu/sinus season. All I have to say is, thank God for ginger.

When I get a cold, flu like symptoms, sinus issues, etc I don't reach for any over the counter meds. I figure that Remicade Infusions and daily Lialda use are enough meds for one body. I'm also highly paranoid of putting anything into my intestines, especially meds. A few years ago I had a Crohn's relapse after taking DayQuil/NyQuil for a cold. Since then, I try and avoid meds for any non-Crohn's related illnesses like the plague. And so far, I've been successful all but one time.

I started juicing ginger a few years ago in an attempt to ward off sickness. It worked each time until last year, when I ran out of ginger and didn't go to the market to get it for over a week. Well, my health paid the price due to my inaction and laziness. My cold developed into a nasty chest cold, and I was forced to get on antibiotic to treat pneumonia. The antibiotic got rid of the the chest cold, but left me with the frustrated feeling of what if...what if I had only juiced a freakin' ginger root. I swore to never do this again.

Up until last week I mostly used ginger for preventative medicine. I would immediately juice ginger if I was around a coughing person, sick person, or any germy type situation. A few years ago Matt came down with both strep throat and the flu at the same time. I juiced ginger like a champ and never caught his sickness. That was my first indication that this stuff was living up to it's super herb, super spice name.

It was only until last week that juiced ginger truly fought off the nasty cold that I had caught. In this scenario I was no longer on the offensive with ginger, but on the defensive. I had a deep cough, was coughing stuff up, runny nose, was fatigued, etc etc. I thought it was now or never, and hoped that the ginger would work. If it didn't, I felt like I'd be screwed. The Chinese have used it for centuries upon centuries as a natural healer...it sure as hell better work for me! I had put my preventative medicine faith in it for a few years, I didn't want to think I was crazy!

True to its reputation, the ginger completely fought off my cold. It took about four days for me to completely get over it, but I did. And I didn't get on antibiotic or take any over the counter cold meds. And like I said, it wasn't a light cold. This cold was quickly getting to the same level as the nasty chest cold I had last year (the cold I had to get on antibiotic for). Needless to say, I was relieved the ginger worked!

So, my magic cold busting ginger juice recipe consists of two ingredients: carrots and ginger. I use about 2-3 carrots and almost half of a large ginger root. This drink is incredibly spicy. It's guaranteed that after the first swig your sinus' and pores will automatically open up. This is the kind of drink you want to be done drinking, but don't want to drink fast. You just want to get it over with b/c of the taste! But hey, it works. I was drinking two carrot/ginger drinks a day. It wasn't my favorite thing to do, but it crushed the cold!

This is one of my "smaller" ginger roots. I used a medium-large sized banana for a reference point!

I would use about 3/4 of this ginger root in one drink.

A few times I brought a ginger root home from the market to find out it was molding from the inside out after tearing it apart. That was incredibly annoying. Now I break the freakin' ginger root in half at the grocery store to ensure that it is not moldy. If, once you break it open, it has any tint of green around the rims, toss it.

A "healthy" looking ginger root (no green)!!

Because of my cold I had to cancel my Remicade Infusion (b/c it's an immunosuppressant it can't be given when one is sick). Ah, whatever...I'm rescheduled for next week. It was frustrating not being able to ride my bike, but at least I got over my cold and was able to fly home to AZ! All thanx to ginger! Give the recipe a try...you need a juicer, but it's worth the buy!!

The Art of Normalcy

2009-09-10T21:38:00.010-07:00

I should be ashamed of myself. It's been five months since my last entry. I apologize, and though have said it post after post, I won't let it happen again. Now, where to start...

First off, I've hit the one year "fake" remission mark. I refer to this as my "fake" or "partial" remission mark b/c it marks a year of me not pooing blood. I did, however, continue to have uncontrollable bowel movements (uncontrollable in the sense that if I didn't get to a bathroom at a moments notice I would have to compete with my dog for a bush to poo behind). So, because there was no bleeding but still uncontrollable bowel movements I call it "fake/partial" remission. It's a partial remission for me because my body no longer required steroids to keep me from bleeding. Not needing steroids was a huge accomplishment all in itself.

Last year, I went into full remission November 26th, 2008. The day before Thanksgiving. I will hit my one year full remission mark soon. No bleeding/no uncontrollable bowel movements. Sometimes I still can't believe it. Words cannot describe how blessed and thankful I am. Alleluia I tell you.

To those of you out there battling with unbearable Crohn's or Ulcerative Colitis flares, it will get better. I promise it will. Don't give up. Three years ago there was a moment in my life that I honestly thought my dog (then two years old) would outlive me. I was newly diagnosed, felt incredibly alone, had a raging headache, and was so weak I couldn't really move. I was lying on my bed staring at the dog and thought to myself "There is no way I'm going to make it to my 30th birthday. The damn dog's going to outlive me." I was 25 at the time and I believed it. I honestly, 100% believed it. For the next two years thereafter I was constantly sick with flare after flare. It was a vicious roller coaster. I didn't have a normal life. I had absolutely no control of my body. Life as I knew it had been turned upside down and inside out. I would get extremely angry at people who would go into remission or who had been in remission for long periods of time. People whose symptoms just went away. I was angry because though I hoped and prayed that would happen to me, I couldn't fathom it. I had a severe case of the illness and couldn't see the light at the end of the tunnel (though I desperately wanted too). After two years I thought that those in remission must have had milder forms of the disease, and that I was totally screwed. It was a real crappy deal (no pun intended). So, amidst all this rambling, I'm just trying to tell you that it will get better. Your disease, whether it be Crohn's or Ulcerative Colitis, will go into remission. It's just going to take your body time to work itself out. When it's ready, it will go into remission. Don't lose hope. It took me over two years to reach some sort of stability. The same will happen for you. It's completely normal and okay to be angry at those in remission(I was there), but don't lose the faith.

Now, on to me actually calling myself "normal." Those of you that know me know that I am far from normal. BUT, according to my Gastro Doc, Dr Greene, I'm normal!

At the end of May I picked up a nasty virus. I believed I got this virus because of my suppressed immune system (Remicade is an immunosuppressant). I explained to Dr. Greene that I was angry that I had gotten sick, but that I knew the Remicade was definitely to blame. I told him I was sick and tired of not having a "normal" immune system and that I wished my body would just act "normal." Dr. Greene calmly smiled, looked at me, and said, "Emma, you are normal. You probably would have gotten this virus if you weren't on Remicade. You need to start living your life normally." I paused for a second, processing what he had just said. I was normal? What the?! After that visit with my doc, my mind frame changed. It's apparent to me now that that's all I needed to hear. I went downstairs after he told me I was normal and got my Remicade (aka Mouse Juice) Infusion and was on my bike the NEXT day, riding strong. And to top that off, I raced a few days later.

Getting ready for my race

Racing!!

I did WAY better in this race (in June) than I did back in March. I didn't win, but I was out there. It felt great to race again. I was excited b/c my super awesome Grammy GIRL was there to watch me race. Before the race Matt reminded me that I had gotten my infusion a few days before and that I should be proud of myself for just getting out there. Definitely a different mindset that I had back in college, but he was right. Life was different. I'll be fast again, it's just going to take me a little longer than most due to my lil "situations." But hey, I'm "normal" now, so race season next year is gunna be a blast!

On a more serious note, I needed to hear my doc say that I was normal. I had, after all, lived in a Crohn's bubble where every sickness (flares) were directly related to the disease for two plus years. Since I wasn't pooing blood or having uncontrollable bowel movements (thank goodness) I blamed the Remicade. It was, after all, an immunosuppressant. I had never had a non-Crohn's type illness since being diagnosed back in 2006. As you can imagine, it was weird picking up a virus and it not being related to Crohn's. It was completely foreign to me. I forgot that "normal" people get sick too.

I still take precautions, but have decided to do "normal" things that I wouldn't even consider before. I'm getting into backpacking (NEVER thought I would do anything remotely close to it) and am planning a 96 mile backpacking trip into the wilderness next summer. Call me crazy, but hey, my doc said I'm normal! I will obviously take precautions and be smart about it, but ultimately want to do this. When I told my sis about this trip she said, "Are you sure you can do that with your Crohn's? Are you sure that's a good idea? What are you going to eat? What if you get sick?" With a smile I replied, "I'm normal now."

Breaking through the clouds at the top of Hurricane Ridge in the Olympic Mountains

Food 101

2009-04-08T19:55:00.003-07:00

I've received tons of questions regarding my dietary restrictions, what I eat on a daily basis, etc etc.

Next week (starting Monday) I will post my daily meals for all to see! If wheatgrass, goats milk, and a carrot/beet/ginger/celery/onion juiced veggie drink sounds good to you then check back next week!

I'm also introducing the "Are you Serious?" series to my blog. Basically I'll be calling out ridiculousness as I see/hear it...

Check back soon... =)

Live Your Life

2009-03-22T17:44:00.009-07:00

I have now been in remission for 6 months. I'm overwhelmed with emotion. 6 months...for some reason that sounds so much more successful than 4 months, or 5 months, or 5.99 months.

I always prayed, hoped, and had faith that I would stabilize and go into remission for a long period of time (preferably forever). But had you asked me this time last year if I thought I would be in remission for 6 months I would have said no. I'm just being honest. You've got to understand that I was living the vicious prednisone cycle. If you haven't been following my blog, I'll break it down to you like this. For 2.5 years I would poo blood and in turn get really sick, get prescribed prednsione, go into remission, and 3-6 weeks after getting off the prednisone I would relapse. That's just how it went. It sucked.

When I was first put on my mouse juice (aka Remicade) it didn't help. In fact, my mouse juice didn't really kick in until this past July when my doc doubled the dosage and put me on 500mg, which is about 9mg/kg (much thanks to my super awesome nurse Cindy [pictured above] for giving me the correct numbers!! Cindy is one of the nurses that administers my mouse juice at my new infusion center).

It's awesome being in remission. It's more than I could have ever hoped for. But honestly, it's also a freakin' emotional roller coaster for me. It's bittersweet. I want it to last forever. I feel like it will last forever, and that's what I'm hoping for, but I also fear that it will be ripped away from me should my dormant intestines decide to awake. And I, apparently, have no control of that. It pisses me off. It makes me angry. When I have a crazy hard workout on the bike I wonder if I would be able to do that same challenging ride flaring. I wonder how different life would be. I wonder if I would be able to race. And like most people, my mind is often my worst enemy. My personal trainer over the summer told me that my mind was my worst enemy over and over again. He told me that I constantly limit myself and sell myself short b/c I let my mind get the best of me. I achieved so much with him, and did so many things I never thought possible b/c I thought I was "too sick." And I did a lot of this while flaring. I climbed a freakin mountain on my bike(that I was scared to climb) while flaring. And not only did I climb it, I owned it.

I've been angry since my infusion mostly b/c I've been letting my mind get the best of me. First off, my poor hubby fell off of his cyclocross bike (a combination of a road bike/mountain bike) on Thursday (the day after my infusion) and broke his collarbone and cracked his shoulder blade. That was a totally stressful time but luckily he is OK (we'll find out if he will need surgery this coming Friday). I also started thinking about the road racing season, how mediocre I had performed the first race of the season (March 7th), feeling fatigued after my infusion, etc etc.

It just all got to me. A plethora of emotions.

But all the emotions were masking the true culprit of my frustration and negativity. In truth, it all came down to this: I have been absolutely terrified that I will relapse and be stripped of my "normal" flare-free life. I have been carrying that heavy burden emotion around with me since I realized that this remission was the real deal (I realized this January 2009). Being in remission now for 6 months has been awesome, and it has given me a taste of what it's like to be normal, not sick, stable. And I like it. And can't bare the thought of having it taken from me.

But while in yoga yesterday, I finally realized that it was time to let go. I realized that if I didn't let it go it would eat me up and I wouldn't be able to fully enjoy anything to it's fullest potential. I just gotta go with the flow. I've known this for months but couldn't surrender my inner fear of relapsing.

But today, while riding my bike (of course), I was finally ready to let go, and not be scared of letting go. I've kicked that damn fear to the curb now. I've let it go. I am no longer going to spend this time worrying. It does no good.

I'm blessed I'm in remisison. And I hate to say it, but I'm blessed that it is Crohn's that I have and not something worse. This disease has taught me a lot about myself. It has taught me what is truly important in life. It could always be so much worse. There are countless people my age and younger (and of course, older) who will not recover from their life altering illnesses such as cancer or severe chronic illness. And to you all, my heart goes out to you. I have not forgotten you, nor will I ever. Especially you, Mr. Akre. I often think about you and pray you are doing well. If anybody can defy the odds, it's you. Keep fighting the good fight and hang in there!

And to the healthy folks out there, do not take your health for granted. Nothing pisses me off more than hearing somebody brag about how they spend every wknd binge drinking, or abusing their bodies. DO NOT take your health for granted. Respect it and be thankful. You have no idea how good you've got it...

But I don't know if you've truly got it better than I. My illness, once I accepted it, taught me to see life how it is. It has taught me to truly appreciate nature, family, life, love, and living. My illness has also given me the opportunity to meet amazing people who are fighting incurable illness, who are suffering from chronic illness, and cancer survivors (one of whom was supposed to be dead 10 years ago). Nope, he refused to listen to the doc who told him he wasn't going to live very long.

It was hard giving up control and accepting that when my body flares I'm simply along for the ride. And when in remission it has been hard giving up the fear of relapsing. But that's all over now.

I'm going to live my life...

The above pic is from last Wednesday, which was the 6 month mark. Much love and thanks to my super awesome nurse Cindy who gave me great peace, comfort and inner strength during my first infusion in Seattle this past January. Cindy is the nurse that first told me about "The Body Soul" which inspired my sole February blog post. To read this post, click here.

Cindy takin' care of business in the pic above. Oh, also of the utmost importance. The ladies at this awesome infusion center always gets my vein on the first stick. I can't tell you how awesome that is. Especially considering there was a time in the past when I got stuck 9 times. I always dreaded infusion days b/c I didn't want to get stuck a million times. It really gets old and can bring a person to the brink of tears quite quickly (no, I never cried). So again, much thanks and love to the nurses at Minor and James Infusion Center for making my infusions as painless as possible. You gals ROCK.

March Winter Wonderland!!

2009-03-15T17:25:00.004-07:00

This morning we woke up to A LOT more snow than originally expected!! My muuumm (think Cartman) is here to visit for the week, so I'm glad she got to experience WA winter beauty (even though it's...uh...March)!

What to do when there is lots of snow? Experience natures beauty! Below are pics we took during our crazy long hike on the trials behind our house!! Enjoy!! =)

Saturday "Soul" Ride

2009-03-04T23:28:00.011-07:00

I had a crazy challenging ride this past Saturday with my hubby and his bro. I was planning on riding easy b/c I had ridden long the day before, but the rush of exploring new territory overtook my logic and we kept riding. It was extremely hilly, and I only had 3 luna moons to sustain me on a 3+ hour ride! NOT GOOD!

But, it definitely taught me a thing or two about myself. Riding always forces me to face things within myself that I've been trying to ignore. Like I've said time and time again, riding is my therapy. Not only physically, but emotionally and spiritually.

So...this is my confession.

Every ride for me has been full of pure joy, but also great sadness and fear. Full of joy because I am actually healthy enough to ride and am at the absolute strongest and healthiest I have been in the past three years. The sadness kicks in when I remember everything I have been through with this monster of a disease. And fear. The worst of them all. Fear of a relapse. Fear that at an instant my body can choose to revolt and send me into a downward spiral. Strip me of everything I have been working towards. Fear that I wouldn't be strong enough to race. These are the thoughts I've had week after week. I love cycling so much, and am having so much fun with it, that I can't bare the thought of not being able to do so.

But this ride changed my thoughts of sadness and fear. This ride showed me what I'm made of. It was viciously hilly. I didn't have much food. I was hitting the wall. I was starting to second guess myself, my training, everything that makes me, well, me.

But then my soul kicked in. The final hill of my ride, I was brought to tears. Because I realized that I have no reason to fear. I have been through so much, and have ultimately come out on top. I have gotten a grasp on this disease and will not let it control my life. I will not be constantly scared that I will relapse. I just won't. I'm tired of letting it control my life.

When I'm sick, I become a prisoner to the toilet. I'll be damned that when I'm in remission I'm going to constantly be scared of getting sick and having my "normal" life ripped away. No. Not anymore.

I have faith that I will stay in remission. And I won't worry at least once an hour of every day that I will relapse. Nope. I'm no longer giving this disease that much control.

So, through the beautiful suffering of my ride Saturday afternoon I was able to finally face my fear. And say it out loud for the first time. I told Matt my great fear, though it took me a few minutes to say it aloud. I don't know why it was so hard for me to tell him. He knows my darkest secrets, everything unflattering about me that one could know. But, letting go of this secret was hard. Perhaps because it shows my weakness. I don't know, but I'm glad that I got it out.

And I'm no longer scared. Because it is what it is.

I can tell you one thing, this season I'm going to race my little heart out.

I have no idea how racing is going to go this year. My first race of the season is a road race this Saturday. I'll see how I fare compared to the other girls, and will definitely blog about it! One thing I know for sure, I'm simply glad to be racing. This will be my first "real" race since junior year in college! C-a-razy!

Below are some pics from our Saturday "Soul" ride...

Beautiful Washington!!

Are these two gents brothers or what (Note: Matt's helmet hair)?!

I noticed this tree while suffering up the second to last climb of the day. I thought it was interesting that leaves were growing out of moss...

It's not easy, but facing your inner fears, fears that lie deep within your soul is the only way to heal and get over it. Luckily I have cycling to help me get over my fears and continue to heal.

The Body Soul

2009-02-05T20:07:00.013-07:00

Four months, two weeks.

It's a beautiful thing.

Words cannot express how lucky, thankful, and happy I am. After almost three years of relapse after relapse, I have finally stabilized. I have been in remission, with no bleeding, for four months and two weeks. I've been on Remicade for over a year now, but it wasn't until my previous doc doubled my Remicade dosage last July that I started slowly stabilizing. I am getting 550mg per kg of Remicade, and for somebody my size, that's A LOT.

But, it's working! I have finally stopped bleeding when pooing. I have gotten healthy, have been able to ride my bike consistently, and have been loving life. It's weird to feel "normal." I feel as though I am fully healed and will never relapse again. If I didn't know any better I would stop taking my medicine. But I know better. Because the medicine, as toxic as it may be, is keeping me healthy.

I have a new Gastro doc in Seattle and he is phenomenal. I feel incredibly lucky to have a doctor who is a specialist not only in Gastroenterology, but also Hepatology and Internal Medicine. He's also board certified and a CCFA Physician Member. I hit the jackpot with this one! I've seen him twice and have also had my first Remicade Infusion in Seattle experience. The Infusion center is WAY different from my Infusion Center in Virginia. The first thing I noticed was the fact that the chairs didn't look nearly as comfy. I can deal with uncomfy chairs, but am saddened that we also have the ultimate privacy, which means I can't really talk with other patients receiving their infusions. Everybody has a story, and I like listening. Reflecting. Appreciating.

The nursing staff is also awesome. My nurse for the day asked me how long I've been stable. I said four months. Since November 26th. She then asked about my Crohn's history, so I went into the fact that I used to be an Intelligence Officer, couldn't achieve remission, and was sadly medically retired from my profession last April. I then went on to tell her that I have never been in full remission without the use of steroids until November 26th. I told her I sleep 8-10 hours a night. I try to minimize stress in my life. And I ride my bike. I told her I've teamed up with Vanderkitten to develop a worldwide club team, which has been extremely successful.

And that's when she told me she believes in "The Body Soul." She believes that our bodies often times try to let us know when we are doing something that isn't right for us. This can be a profession, lifestyle, life situation, etc. Our bodies will continue to act out until we decide to listen and start doing something that is right for us, and puts us at peace. And I believe her.

Had I never gotten sick I would have thought she was a crazy nut. But almost three years of severe illness will definitely change your view on life. Her theory, in my opinion, is 100% right. Cycling feeds my body soul. If I don't ride, I turn into an extremely unpleasant person. I can't tell you why, that's just how it goes.

My new doc has also put me on Lialda to help keep my large intestine in check. He feels that the Remicade alone is not strong enough to keep the sleepy giant known as my large intestine dormant. My large intestine is a volcano; and he felt that the Lialda, which is an anti-inflammatory for the large intestine, will help keep my large intestine dormant so it won't awaken and erupt me into a flare. It can only help, so I've been taking it! It is also the mildest form of medicine for my illness that one can get! So, I'm on really really toxic, and really really mild. Getting the best of both worlds I guess!

Now to catch up on my blog since Christmas (yes I have been the biggest blog slacker). Matt and I have finally settled into our home and absolutely LOVE Washington State. I never, EVER want to move. The picture at the top of my blog was taken from my new neighborhood. That pic is a pic of the Olympic Mountains. We are surrounded by the Olympic Mountains, Cascade Mountains, and can even see Mt Rainier on a clear day. Absolutely awesome!

The first day Matt and I moved into our new house we drove down the driveway and were greeted by three deer. Below are pics of the deer we found in our backyard:

The deer were a nice house warming present, but we knew we wouldn't see much of them as soon as Caesar came home. Well, a day later, Caesar came home. And we haven't seen the deer since. Go figure.

Lastly, the pic below is a pic of me and the pup on the trail in our neighborhood.

I seriously can't get over how gorgeous it is out here! Apparently we have black bears, bobcats, owls, and cougars in our neighborhood. My neighbor said he saw a black bear on the trail a few weeks ago (aren't bears supposed to be hibernating?)...I totally freaked but he calmly said, "Ah, just raise your hands and start singing, they'll run away." Not being one to put my life in a wild animals hands and just *hoping* that they'll run away, I bought bear spray. It shoots 35 feet away and will knock a bear on his ass (at least make the bear feel like it's choking). Hopefully I'll never have to use it, but if I do, at least I'll be ready! I mean, people have guns in their homes to protect them from intruders, why not carry freakin' bear spray in bear country (duh). I am convinced my neighbors think I'm crazy for carrying bear spray, but I think it's preventative mauling...My neighbor also told me that at night a bobcat chills on the porch a few houses up from ours. Sweet...maybe? I guess I just have to get used to wildlife. Wildlife or not, I love it here!

And for my riding buddies...the cycling out here is epic. And I'm not joking. I am one to get extremely bored on rides. I was NOT designed for the flats and get extremely bored when riding in flat terrain. I'm a climber, and out here, there is nothing but hills. And nasty ones. And you never really get a chance to recover because after you climb up one and roll down, you're instantly climbing up another. We also live up a hill, and it is a mile climb just to get home. So, after getting completely destroyed during my rides, I still have to climb a beast of a hill just to get home. I love it. It will make me stronger and hopefully I'll kick some ass this season.

Due to moving cross county, a medical problem, and traveling non stop the month of December I haven't been able to ride consistently since November 2nd. I finally have been consistent for the past three weeks or so, and am getting into shape. I'm getting excited for the upcoming season and to check out the WA State racing scene. I know most gals have been training since November...but whatever...it's a LONG season. The racing season starts the first wknd in March and ends late August.

I've got plenty of time to show what I'm made of. And I can't wait! At least I know I'll DEFINITELY be racing in the HOTTEST kit in women's cycling today. Most of the races out here are road races and crits, which is what I love. Hands down, I hate TT's and won't be doing any this season (unless the TT is climbing up the side of a mountain). And there ya have it.

I know this has been a ridiculously long blog posting. I will definitely update my blog much more frequently in the (near) future. I'm going for bi-weekly. Once a week at the least! =)

To make a long blog entry even longer, I will leave you with the below pic. It is me on New Years Eve on the Vegas strip (which I DO NOT recommend to anybody and will never do again). Homeboy definitely looked authentic dressed as The Joker from Batman, but when he(a complete stranger) put his hands on my neck...well...freaky.

Headin' out to Tour of California next weekend. Totally stoked! Until next time...

VANDERKITTEN BABY!!

2009-01-23T22:36:00.006-07:00

The Vanderkitten Racing Cycling Club is now up and running!

We have received an overwhelming response on both a national and international level. It is absolutely awesome!

I cannot describe what it feels like to see your dream take off. Much thanks and love to Dave, who has made this possible!

Cycling has been extremely therapeutic for me, and has helped me through the darkest times of my life. Literally. Vanderkitten has given me my cycling soul back. It has resurrected my feisty, "I'm gunna kick your ass in this bike race" attitude. J-dub showed me the Vanderkitten website well over a year ago, and the rest has been history. Thanx J-dub!

Merry Christmas!!!

2008-12-25T14:58:00.006-07:00

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...

2008-12-21T19:16:00.009-07:00

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

2008-12-03T17:08:00.011-07:00

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

2008-10-02T17:26:00.012-07:00

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...

2008-09-11T13:40:00.008-07:00

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!

2008-09-07T15:47:00.012-07:00

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!

2008-08-29T17:30:00.006-07:00

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...

2008-08-20T19:31:00.014-07:00

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!!!

2008-08-16T15:51:00.007-07:00

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'!!!

2008-08-06T11:23:00.003-07:00

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

2008-07-19T20:41:00.006-07:00

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...

2008-07-16T18:14:00.007-07:00

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...

2008-06-19T15:35:00.007-07:00

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

2008-06-15T18:45:00.010-07:00

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

2008-06-12T22:19:00.004-07:00

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...

2008-06-11T17:34:00.016-07:00

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

2008-06-06T14:39:00.016-07:00

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! =-)~

Blue Ridge Extreme!

2008-05-11T16:28:00.011-07:00

I have officially been in remission for a little over a month! Life has returned to normal, and I've been able to do a lot of what I love best...riding my bike! Cycling has been very therapeutic for me throughout my young adult life. Most notably, cycling has helped me deal with my illness. It has taken me nearly two years to adjust to life with Crohn's Disease. The hardest adjustment is realizing that I have no control over the war going on in my gut. I have finally learned to give up control, which was very difficult! It has been hard to realize and accept the fact that at any given moment my disease can decide to act up, and I'm simply along for the ride. Hello, it's my body, I should have control...right? Wrong. Not with Crohn's. Nonetheless cycling has helped me stay mentally strong and keep the faith, and that's something the disease can't touch. The latest flare was the hardest for me because I did everything right and still flared. I did everything right with the exception of accepting my disease for what it is. During my flare-up, it literally took all of my energy to ride 30 minutes. This was a shock to me because I was easily able to ride 3 hours before flaring, but like I said, it is what it is. All that mattered was that I was able to ride on my *good* days, though it wasn't much. It wasn't much, but it was enough to clear my head and give me the strength to realize that no matter how bad it got, I would eventually get better.

The pic above was taken a few weeks ago, during a cycling trip to Williamsburg. I am finally strong enough to climb, which is not only my strength, but my favorite aspect of cycling. That is why I have decided to do the Blue Ridge Extreme Century this year. It's a brutal course, with more than 11,000 feet of climbing with Cat 1 and Cat 2 climbs (eek)! This ride will definitely show me what I'm made of, and more importantly prove the point that I refuse to let this damn disease control my life. Hell, if I can get on the bike during a flare, this definitely should not be a problem (don't worry mom, I'll be fine)! I have a lot of work to do, but riding my bike is what I love best, so I'll be ready. I have decided to postpone participating in the GYGIG ride until next year, so stay tuned!

Cycling Frenzy!!

2008-04-15T15:40:00.008-07:00

I raced for the first time since my junior year in college this weekend. It was a 12 mile Time Trial, and it was a lot of fun! I came in seventh (out of eight)...but hey, at least I wasn't last! And considering all I've gone through the past few months...Anyway, I wasn't expecting much, I just wanted to get out there and ride! The TriPower women seriously kicked some butt! Our fearless Team Captain Laura came in first in the Women's Cat 1,2,3 race and super awesome BJ came in first in the Women 40+ category! All I can say is that our women kick some major A$$ and I'm so glad to be part of such an awesome team! Laura is my hero. She is super fast and shows that hard work and serious training pays off. She has beaten pro's for goodness sakes! It's only a matter of time before a pro team comes knocking down her door...YOU GO GIRL!

It was Barb's first time trial, and she rocked! Barb and I warmed up together and seriously just had a great time! Not only is she a great friend, but she keeps me from getting too worked up over the "small stuff." She also makes everything so much fun (remember, she made my colonoscopy fun...enough said)!

This is a pic of Barb and I warming up before our TT!

Barb and I would like to thank Matt for all of his mechanical expertise (thanx for getting our bikes ready)!!

All and all it was a great weekend and it's now time for me to buckle down and start training for my GYGIG ride. And no, I haven't built my fundraising page yet (I will this week)!

Lastly, I was surfing the net and found a blast from the past. I found a pic of myself sprinting to the finish line at the Navy Crit WAY back in the day ('04). That was the first race I ever won. I remember calling my mom and telling her I won. She sounded shocked, but then offered to buy my a pair of Ksyriums...which she did. You Rock Mom =) Actually, her and my dad supported my habit throughout my college career. I am very fortunate, as my college bike was a Colnago Dream...not many peeps can say that! You guys rock!

Definitely a blast from the past!!

In Remission Thanx to My Mouse Juice

2008-04-10T17:15:00.014-07:00

I am happy to say that after a seven and a half week relapse I have been in remission for an entire week! I had my third Colonoscopy last Tuesday and my Remicade Infusion (aka mouse juice) the day after (Wednesday). All I can say is, what better way to bring in the month of April then by getting your colon looked at?! I have to thank my great friend Barb who actually made getting a colonoscopy fun! She picked me up bright and early Tuesday morning and drove me to the hospital. She waited for me while I was getting my colonoscopy, helped me walk when the colonoscopy was over (b/c I was still high from the anesthesia), took me out to lunch, and then took me to the mall! What better way to spend the day and forget about the horrors of having a tube stuck up your rear?! I have never enjoyed getting a colonoscopy, but Barb made it enjoyable. I didn't dread getting my colonoscopy this time around, and I really have Barb to thank for that! So, THANX BARB, you're the absolute best! I've had three colonoscopy's in the past two and a half years, and this one by far was the most bearable!

This is a pic of Barb and myself before my first ride after my awful flare...

My Remicade infusion went fine. My hubby was there with me the entire time, so it definitely made the over four hour experience much better. Usually it takes about two and a half to three hours for the infusion process, but the pharmacy was extra slow making my Remicade this time around. This was my fifth infusion, and it does get easier each time.

My first Remicade infusion was a very humbling, real experience. I walked into the ambulatory infusion center and saw a woman who was completely bald. She was standing at the desk, talking to her nurse, with her husband by her side. I remember checking in and taking a seat, waiting to see what was next. I was, by far, the youngest person there. I got looks from the older patients, each of them wondering if I was a patient or a family member waiting for their loved one. I briefly talked to an older woman who looked at me and said, "Are you waiting for somebody?" I replied that I was there for treatment and her green eyes widened and in an alarmed yet soft voice said, "You're not here for chemo are you?!" I replied that I was there for Remicade and she looked relieved but then went on to tell me that she too had Crohn's and had been on the mouse juice for years with great success and little complications. My first sign of hope. I was then called by my nurse and taken to my room. The room had five oversized comfy lazy boy chairs. My chair was next to a woman who was getting Chemo. She too had no hair. Her chest was covered up, but she was receiving her treatment via a port in her chest. Her husband came in after her treatment and took her home. I remember sitting there thanking God for all of my blessings. I remember just being completely speechless and stunned. These were real people...mother's, grandmother's, wives, sister's, etc. They were going through probably one of the toughest times in their lives, and the rest of the world was just going about their daily routine as if this doesn't happen. We can hear about Chemo and treatments and think, "Wow, how unfortunate." But to actually see somebody going through that, though a complete stranger, had me speechless. Sure, I have a chronic illness, but it could always be worse. I will never forget my first Remicade Infusion. It reminded me just how fragile life really is. In our busy daily lives we often forget what is truly important in life. We often get wrapped up in our careers, money, and materialistic "feel good" things. Things that, when it all comes down to it, are meaningless and completely dispensable. It often takes a life threatening illness or traumatic event for us to realize that God, family, friends, faith, and love is all that matters.

This is a pic of me in my big comfy lazy boy!!

I have my first race of the season Saturday, which is a 12 mile Time Trial. I'm not sure how I'll do, but am glad to just be out there racing. I've only been able to ride my bike three times since being in remission, so tomorrow is definitely going to be interesting! I want to gage my fitness and see where I am compared to the other girls in my category. I will keep you posted! Next week I will start training for my Get Your Guts In Gear (GYGIG) ride, and I will definitely update my blog with training info/pics! I still haven't built my fundraising web-page (yes I'm a slacker), but will definitely do it this week (seriously)!

I Can Feel Them Breathing...

2008-03-17T11:58:00.024-07:00

I thought FOR SURE I would be in remission by now. My doc gave me steroids on Friday, and the 'roids have always calmed down my gut and kicked me into remission. Not this time. I am extremely frustrated but also pretty nervous. The 'roids aren't working and I feel like something is wrong.

I already told you about Friday and Saturday's escapades. Well, unfortunately, Sunday was no better. I had about 15-20 episodes on Sunday. I was very nauseous, weak, and definitely didn't want to eat anything! I forced myself to drink an 8 oz can of "unflavored" Peptamen. Let me tell you, Peptamen is disgusting. I have found that if I put it in a water bottle with a "squirt" top it is a little easier to handle. I still can't help the uncontrollable contortion my face makes after I take a sip. It's just that gross. I'm not sure how to describe the taste, but can tell you that it tastes kinda like metal (whatever metal tastes like). And I thought evaporated milk was bad! Please!

Well today I've managed to have thirteen episodes so far. I'm weak, tired, dizzy, the list could go on and on. Maybe I had a small glimpse of hope that with my lack of eating I would get better. Well, I haven't, and that's why I'm concerned. I'm just losing straight blood. It looks like crushed up bloody oatmeal (I'm just trying to keep it real and tell y'all how it is). But I shouldn't have any substance coming out, that's the problem! I haven't eaten anything! You know, it's days like this I feel like like giving up. I feel like throwing my hands up in the air or burying my face into my hands and just completely breaking down. I was doing everything right before this relapse. I was so careful about everything. I was eating healthier than anybody I've ever known, was exercising regularly, getting plenty of sleep, wasn't stressing out (too much)...and I still relapsed! I mean seriously, what gives?

I'm not going to give up, though at times it does seem quite tempting. I can't tell you how many times I've just wanted a piece of pizza these past few weeks. I'm not going to give up because I constantly remind myself of the sacrifice my father made for me on December 29th, 2007. My father walked nineteen miles in eleven degree weather in the mountains of New Mexico. Let me tell you something about my dad. He is 270 lbs and six feet tall. He's also from Arizona. Walking nineteen miles in the mountains in eleven degree weather wasn't exactly a walk in the park for him. But he did it for me. He made a sacrifice for me so that I will eventually be healed or stabilized. He pledged a "Manda" for me at the Chimayo Sanctuary. I had no clue what a Manda was or even what the meaning of true faith really was until December 29th.

Manda [Mahn'-dah], f. 1. Offer, proposal. 2. Legacy or donation left by virtue of the last will.

~Velazquez Spanish and English Dictionary

My dad went forth with a personal sacrifice in hopes that God would heal me. And He will. Just not yet. None of us really know what God has in store for our lives. I don't understand why He has chosen this path in life for me, but I have now learned to welcome it and just give up total control and trust that things will get better. I have no control over the war in my gut. I've done what I could and the rest is up to God. And I know I will get better. That's it. It's taken nearly two years for me to get to this point, but I'm here now. That's what matters.

"Learned quick, knew what to say

Then three Angels walked my way

In Spanish tongue they knelt to pray

And said, "God keep him safe

From screaming voices"

They became my family

Outstretched their hands are on my head

You know, I can feel them breathing

They actually knelt down and prayed for me

They actually knelt down and prayed for me"

~HRSA by Blue October

Hello Chipmunk...

2008-03-15T13:53:00.006-07:00

I went to the doctor yesterday because I have been flaring for the past three weeks. Due to the severity of my condition he decided to put me back on prednisone(steroids). I can't say I was surprised, but definitely frustrated! Prednisone is the only medication at this point that actually keeps my body in remission, but the side effects are terrible! Just look at the picture to the left! Do you see my chipmunk face?! That picture was taken exactly a year ago. I went from 105 lbs to 133 lbs (I was 133 lbs in that pic) while on the 'roids. At 5' 1.5'' 133 lbs isn't exactly flattering! Oh well, I'm used to the weight fluctuation. I just wish we could actually find a medication that works without me having to go back on the 'roids.

Last night was pretty brutal. Between 7pm last night and 8am this morning I had between 15-20 episodes. I lost count after ten or so. Continuously waking up in the middle of the night to have episode after episode definitely ruined my night and my Saturday plans! It was, by far, the worst night I've ever had with this disease. The good news is, at least I am now on the 'roids, so I should be in remission soon!

Today the weather was absolutely perfect, capping out around 64 degrees. I am not happy to be cooped up in the house today! The women and men of TriPower raced today and I KNOW did well! There is nothing sweeter than winter training paying off! It makes all the long cold training days worth it! I would have been out there cheering my teammates on if I was not a slave to the pot.

I am a little frustrated at this point but trust that things will get better soon, they always do. I haven't built my GYGIG fundraising page yet, but will post it on my blog as soon as I do. =)

My Story

2008-03-07T10:22:00.000-07:00

As many of you know, I have been battling with Crohn's Disease for the past two years. I have been hospitalized twice, and have almost lost a portion of my intestines (lucky for me, I dodged the bullet each hospitalization)! Below is a "brief" description of my struggle with Crohn's during the past two years...

I first became ill in April 2006. I started having bloody bowel movements and for some odd reason thought it was no big deal. After a week of bloody bowel movements I finally made an appointment to see a doc. After fecal testing and me getting so sick I couldn't hold anything "in" (even drinking a sip of water sent me running to the bathroom) he made me an appointment to see a Gastroenterologist. By the time I got to the Gastro doc (about three weeks later) I had lost fifteen pounds, was having 10-18 bloody bowel movements a day, and looked like "a corpse" as my girl Christi put it (I love ya girl)! My first colonoscopy showed that my entire large intestine (aka colon) was inflamed and full of tiny red ulcers. I was then diagnosed (should I say misdiagnosed) with Ulcerative Colitis and given Asacol (mesalamine) and a huge dose of prednisone (steroids). I instantly went into remission (thanx to the 'roids) and thought I was finally able to live a normal life...ha, little did I know! After tapering off of the prednisone I relapsed. I was then put back on prednisone and the vicious cycle began...

I was on and off of prednisone for seven months, only going into remission when I was on the prednisone and coming out of remission (relapsing) about 3-4 weeks after tapering. My body was deemed steroid dependent and my Gastro doc put me on mercaptopurine (6-MP) which is a chemotherapy drug that doctors use to treat some cancers, especially acute leukemia. 6-MP did not kick me in remission but did make me very nauseous and fatigued. I had to get my blood drawn every Monday for roughly three months because the 6-MP started attacking my liver and my Gastro doc had to keep an eye on it. I eventually had to come off of the 6-MP because of my liver.

Because my body was not able to stay in remission my Gastro doc decided to perform a second colonoscopy and found that I had anal fissures and some activity in my small intestine (I even got to take one of my own biopsies during the colonoscopy!). I then became suspect for Crohn's and a capsule endoscopy was performed. After my capsule endoscopy I was diagnosed with Crohn's Disease. Unlike the tiny red ulcers in my large intestine, the ulcers in my small intestine were big, deep and white (eek)! In an attempt to keep me in remission without the use of prednisone I was put on Remicade and currently get an infusion once every eight weeks.

Despite being on Remicade I was hospitalized in November 2007 due to an awful flare. I was having 10-15 bloody bowel movements a day and was having the occasional "accident." I lost 23 pounds and was severely anemic. My parents came to visit and my husband did a phenomenal job taking care of me (he even gave me baths while I was in the hospital, I never once thought at age 26 my husband would be bathing me b/c I was not physically able to bathe myself). I was on Total Parental Nutrition (TPN) for a week (I DIDN'T EAT FOR A WEEK)! Luckily my intestines calmed down and I didn't need intestinal surgery (the colorectal surgeon was briefed btw). After being discharged from the hospital my arms were severely bruised from the 24x7 TPN and prednisone IV's. After being discharged I was again put on oral prednisone in conjunction with my Remicade.

Unfortunately Remicade has not been able to keep me in remission without the use of prednisone. It has now been six weeks since I tapered off of prednisone and unfortunately I have relapsed. I have been flaring for the past two weeks. The good news is, I haven't gotten worse! I'm having about four bloody bowel movements a day. My doc put me on entocort vice prednisone. The entocort has definitely kept me from getting worse but has not yet put me in remission. I can no longer take prednisone for a long period of time because the prednisone has caused osteopenia in my spine due to me being on and off of prednisone for the past two years. I am staying positive and not allowing the disease to take control of my life! I will keep you posted!

On a positive note, after my serious hospitalization in November I decided to not let the disease control my life any longer and take my life back once and for all. I joined an awesome cycling club, Team TriPower, and as a result have been motivated to ride and stay positive about my health. The members on the team are not only fast but extremely supportive and wonderful! Hopefully I'll be well enough to race with them soon!

Most importantly, I will be riding 210 miles this August in Seattle, WA in the "Get Your Guts In Gear (GYGIG)" ride to help raise money to find a cure for Crohn's Disease and Ulcerative Colitis. GYGIG is a three day event, with each participant riding 70 miles each day. Please stand by for my online fundraising page (I am going to work on building my website this weekend)! I am participant number S-4. Both of my in-laws have decided to participate in GYGIG as well! Each participant has to raise $1900, so between my in-laws and myself we have to raise $5700! I am completely confident that we will go above and beyond this goal!

You all will be able to track my health/training status by checking my blog regularly! Thank you for taking the time to read about my struggle with Crohn's Disease!