Awake My Soul

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

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

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!

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

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

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...

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

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

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

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.