It's been awhile since I have written. Actually, I just checked and it has been a full month since my last post. During the past few weeks, I have been faced once again with the reality of living with a chronic disease. Most of the time, I tend to live in a blissful state of denial: I am not sick. I am too healthy to be sick. :)
Crohn's Disease can fool the best of us. Or should I say, the best of "you"? We appear healthy on the outside. Athletes, business men/women, active moms, dads, we has no "stereotypical" look. Oh wait-sometimes we do. When an intestinal flare occurs, if it is bad enough, we lose lots of weight, look really sick and pale. Then the doctors hit us hard with steroids to decrease the battle going on inside of our guts. The Prednisone has evil side effects (mood swings, facial hair, hair loss, acne), but my favorite is the big round "moon face" that we get. Some Crohnie's gain 15-20 pounds while on Prednisone for just a few months.
In any case, I don't look sick to most of those close to me. Most people would never guess that I have a chronic illness that will shorten my life. I like to keep it that way! :)
My last posts were full of good reports. I was feeling WONDERFUL and couldn't believe it. I enjoyed every bit of feeling great while it lasted. Unfortunately, things have changed. The joint pain that came on after my September surgery, has come back with a vengeance. Increasing my 6-MP kept it under control for a couple of glorious months. About a month ago, it came back. Each day it got progressively worse. I realized that I was having trouble once again opening bottles and writing. Sleeping has become difficult again because any joint that I lay on starts hurting and awakens me. The first steps out of bed or out of a chair feel like my feet and ankles are going to break in half. I could go on, but I won't. Let's just say most of the time I feel like I have the flu, along with the joint pain that accompanies it.
Recurring or new symptoms always mean more tests!
My GI physicians (I now have two of them) were on a mission to see if they were missing some active Crohn's in my intestines. This would "make sense" of my recurrent joint pain. First step, was a Wireless Capsule Endoscopy (camera pill). Before ingesting the horse pill, I had to drink a bottle of magnesium citrate. This part of the prep did not go so well for me. It landed us in the emergency room for a very long night of more tests/scans. My belly blew up and I looked about 7 months pregnant. The nurses laughed at me because they said I was so "tiny" yet looked like I was about to "pop".
I struggled through the rest of the prep and was deemed safe to proceed with the endoscopy. After a long and miserable few days, the test was complete. The results, however, were inconclusive. GI Number Two decided that an additional test was necessary because he could not see enough of the small intestine. So, as soon as I was recovered from the first test, I found myself (once again) in the hospital for several hours, prepping for a second procedure/test. Once again, my body did not do well with the test prep. Perhaps it was the 3 bottles of contrast I was required to drink! Three days of pain, nausea, and abdominal distention LATER...the doctor called with the "good news". After being almost certain I had another stricture in my intestines, the tests were all negative, reflecting that there was NO active Crohn's disease in the intestines.
Awesome news (ahem), but what about the fact that I am still gimping around like an 80-year-old woman? Second trip to the rheumatologist comes into play. The doctors have their pow-wow, and decide that it is time to bring out the "big guns" in the treatment of my Crohn's Disease.
Next week, I begin the biological agent called Humira. I will give myself injections every other week. This drug is a Tumor Necrosis Factor inhibitor. It will block my body's production of TNF that is causing all of this extraordinary inflammation.
If you want a good scare, just read the list of side effects for Humira! It is not something that you want to jump straight into without some good thought. However, we have now exhausted just about every other option. Yes, I have tried diet modification, herbs, and even acupuncture in the past. I have tried (and failed) the traditional oral medications for my condition. And no, Tylenol and/or Advil do not work. Not even close. Plus, Chronie's can't take anti-inflammatories. Oh, and prescription pain killers will take the edge off the pain, but wreak havoc on the rest of your system. They are a "no-go" for me.
With an auto-immune disorder, you must tackle the root of the problem or the side effects will not cease. For me, this means suppressing a whacked out immune system that perceives good things as foreign and goes into attack mode. I guess after my diseased intestine was removed, Mr. Crohn's moved on to bigger and better things: my joints. :)
And so, we embark upon a new adventure with biologics next week. It is not a decision that was taken lightly. Trust me!! If I could ditch all my medications and go the holistic route, I WOULD. However, that route would likely send me to my grave much, much sooner. Therefore, I rely on modern medicine. Modern medicine and prayer. I don't pray for a cure or for healing. That is not how I pray. The God to whom I pray has a grand plan for each of us. HE knows what HE is doing. Sometimes healing and/or "cures" are not in His plan. That doesn't mean I am not worthy of healing, or that I don't hope for relief. Of course I do. I am very strong and very stubborn. Not many things stop me from doing what I want to do in this life. I can still cycle 80 miles when I want to and if I am having a "good" joint day. As long as my joints stay in motion, they are happy. In fact, I am encouraged to exercise every day. But for me, it is getting harder to WANT to, because of the pain. If you know me at all, you KNOW that is a huge problem. :)
What I do pray for is peace on this journey. May I do what I am meant to do in this life and in the short time I am here. None of us are promised another day. May I always encourage others to give their best and not to give up when the going gets rough. I also struggle with feeling like a burden to my family and friends. I have the most wonderful husband who takes over more than his share at times when I literally cannot move. My friends and athletes are also the BEST. But I want to SEE them more, and feel well enough again to get out with them and take their calls in a more timely fashion. I want to be able to play actively with my boys again, and not dread even going up the stairs to their rooms!
Lots of things still left to do. Lots of love to give, goals to reach, dreams to build.
So for now...it is "back to reality" for me and Mr. Crohn's. But next week, the new fight begins. New treatment will start and you can believe that my will to get better is even stronger than ever. Look out! You should know by now....I. DON'T. GIVE. UP! :)
Thursday, March 24, 2011
Friday, January 28, 2011
"I Get By With A Little Help From My Friends...."
Most of us have friends. There are "friends" and there are FRIENDS. Know what I mean? Besties, BFF's, soul sister/bro, whatever you want to call them. They are the ones that are always there for you. When you find yourself in the darkest of hours, a FRIEND will grab your hand and guide you back to the light.
I have been blessed beyond measure to have amazing girlfriends. You know who you are, and you know that I don't know where I would be without you. I want to thank you from the bottom of my heart for always loving me, and taking the time to listen or show that you care.
This past year was a difficult one. Being diagnosed with a chronic illness "rained on my parade" of life. But during that rain, I had some pretty hefty "umbrellas". My FRIENDS. They covered me and protected me when I needed it most. At times, I found myself literally standing in the pouring rain. Overwhelmed with life, I made mistakes that should have never been made. Yet my "umbrellas" came to the rescue. They never fail, they never "break" and I wouldn't "return" them for anything in the world.
They are selfless, giving, patient and kind. I only hope I can show them half of the love they have shown to me.
Last year, three of my best friends flew all the way to Utah just to see me attempt my first Ironman. After learning that my parents would not be able to make the trip, they decided they would go and be my support. They helped my husband with the kids, and helped me survive the week leading up to the event.
The night before the event, they decorated our rental house with streamers, balloons, and signs. They shoe-polished our rental cars. "You can do it, Marcia!" and "Marcia is our Ironwoman". Of course, my favorite, "FINISH STRONG".
On race day, they got up before the sun came up just to see me off for the day. Then, they began their own "Ironman" day. What a long day for them as they chased my kids around, found me along parts of the routes, held up their homemade signs.
Just knowing they were there for me, was HUGE. They believed in me, no matter what. They were proud of me whether I finished or not. There was one point during the 15-hour-day that I did not know if I would finish the race. I was in so much pain from the intestinal stricture, that I was doubled over and miserable. My friends and family were worried. I had worked this hard, and they wanted to see me finish. One of my best friends, Kathy Dann, is a fellow triathlete and runner. Kathy had endured her own set of problems that spring. She had just recovered from a fractured ankle/foot.
I can't tell you how touched I was when I looked over and saw Kathy running alongside the course by me on the marathon. She didn't say a word. She just ran silently. There was a look of concern on her face. She knew I was hurting and I could tell by the look on her face, that she was hurting for ME. I would disappear into the hills and obscured areas for a mile or two on the course, and then come back
out on the main road. Every time I came back out, Kathy was there waiting to run silently beside me. Just knowing she was there, made me feel encouraged and strong.
FRIENDS. That's what they do. They lift us up when we need it most. They sacrifice things in their lives to help us get through tough times. I feel as though my poor friends got more than they bargained for with me! Accidents, surgeries, traumas, Crohn's Disease, my friends have never left my side.
I am blessed to have had two of these girls in my life since I was 9 years old. Wow! That is a LONG time. These girls are my sisters. They have stepped in over the years and been closer than family. Emergency hospitalization and surgery in September, brought all of these girls to my side. What my husband and I would have done without them that first few days, I have no clue. They took over my care, the care of my kids, and ran my household until my family could get to town.
My FRIENDS, are my "umbrellas" and also my angels. I am extremely thankful to have such strong women in my life.
They also challenge me to step up my game. I want to make sure that I would do the same for them, or someone else in need. Sometimes we get the biggest blessing from helping others, but first we must take the time to give of ourselves. Let go of our pride and judgement and see other people for who they are. Accept all of their flaws and continue to love them. Knowing that none of us are perfect and that we all fall short sometimes.
I challenge you to take the opportunity to truly thank the strong, positive people in your life. You wouldn't be where you are today without them. I also challenge you to BE the kind of friend that you would like to have. Go that extra mile, break out of your comfort zone, take that risk. It will not go without notice or without appreciation.
Giving of yourself and your time to be a FRIEND, and not just a "friend" is one of the best things you can do for yourself and others.
Thank you, Esther, Jamie, and Kathy. You are my FRIENDS (along with so many more). Without you three as my "umbrellas" this past year, I would literally be soaked! :)
Tuesday, January 25, 2011
Let The Good Times Roll.....
This last couple of weeks has been pretty amazing. Since my 6-MP (oral chemotherapy for my Crohn's Disease) was increased, my joint pain has significantly improved. My energy level is also better than it has been in years. Some days I think I am just dreaming that I really feel THIS good. In fact, it feels "too good to be true". I have not had this many "good" days in years. Even a recent bout with strep throat only knocked me down for a few days. Months ago, that would have been about a two-week set back for me.
So overall, life is REALLY good here. I have more energy to spend quality time with my family. I absolutely love being able to spend more time with my boys and less time sick in bed. Spending the days playing with them instead of doubled over in pain or fighting nausea and flu symptoms, is a welcomed change.
Physically, I have recovered 100% from major surgery in September. My fitness level is currently exceeding my expectations and I feel better than ever. I am cautiously training for my second Ironman in May. I will let my health be a guide as to how much I can push and whether or not I will go that distance. I am enjoying training and absolutely love my work as a fitness instructor, personal trainer, and coach.
I have finally had the energy to put back into my coaching business, "Finish Strong". I have branched out to accommodate body fat composition testing and personal fitness consultations in addition to triathlon coaching. I absolutely LOVE helping people reach their fitness goals.
So why is it that even though life is going SUPER right now, I still feel like I am walking on eggshells? Why do I feel like any moment the dreaded fatigue and pain is going to come back with a vengeance? I am still hesitant to plan too far out in the future. I am just starting to trust myself again and that I am able to fulfill commitments or appointments. The good days have outnumbered the bad now for 6 weeks. Will my streak of good health end soon?
I keep telling myself this time is different. Last year at this time, I was living (unaware) that eight inches of my intestines were destroyed from Crohn's. Essentially, that equates to walking around with a partially dead gut. Pretty gross if you think about it. I would have horrible bouts of nausea, dizziness, abdominal pain and fatigue. I was on all the right medications, but they were not helping because the diseased intestine was scarred beyond repair. There was days I would literally lay flat on the floor and not be able to move until my husband brought me a cocktail of medicine. Thank God, we have not seen any of those days since my surgery.
In fact, at that time I was only able to eat certain foods. I called them the "foods within my box" to my friends. I lived on wheat bagels with peanut butter and honey. I could eat sweets and starches because they were easy to digest. All of the healthy things like fruits and vegetables were out of the question. My body views those things as "foreign" and starts attacking the lining of my gut. I now drink daily protein shakes with an addition of "super greens" to fulfill my nutritional needs.
Meats were also out of the question. Now we know why...when you have a damaged, flat intestine the opening is about the size of the eye of a needle. Food just isn't going to pass.
Come to find out, that is the reason why I struggled during my very first Ironman in Utah, last May. I was very prepared for the race and the distances were not a problem. I had assumed that my issues were due to the fact that I lost some of my medication during the beginning of the bike ride. I now know that the bagel I ate in T1 (after swallowing lots of air while swimming out in the frigid water), was going to give me hours of trouble over the course of a 15-hour event because of the severe stricture in my ileum. In fact, I would spend hours on the bike barely able to maintain aero position because of pain. My abdomen appeared as though I was 5 months pregnant. Forcing down food was not even an option.
I was fortunate to make it through the race, since nutrition was a big issue for me. I survived on Cytomax and easily digested foods like pretzels, chips, and Gu chomps. The scenery during the race was absolutely amazing. Utah is a beautiful state. I spent much time on the bike reflecting on the cards I had been dealt the past few months before the race. Not many patients newly diagnosed with Crohn's Disease are able to attempt an Ironman event. My physicians both said, "it just doesn't happen". My family physician and friend later confided in me that he did not think I would be able to do it.
I knew this was a chance of a lifetime for me, and I savored every moment, despite the pain. I learned a lot about myself that day. I learned just how strong I really was, both physically and mentally. I listened to my body and despite the abdominal pain, my vital signs were stable and I felt great. I had a physician called to meet me in T2 for evaluation to ensure that it was safe for me to continue the marathon. We both agreed that while it was likely my Crohn's acting up, my heart rate was perfect, and I was hydrated well. I continued on and finished the race feeling strong. I was disappointed that I was way off my training pace, but numerous stops from the pain and meeting with a physician, took time.
So, if we flash forward a year later, I am in training again. I never thought I would do another Ironman, but I am on track to complete number two in May.
I am at home in the water, on my bike, and on a long run. I feel absolutely no stress, just peace. My heart rate is constantly monitored and I "listen" for any aches and pains. I love to feel each muscle working to propel me forward. With each breath, I am just thankful to be alive and doing something I enjoy so much.
I will never forget what one of my close friends told me. She said, "Marcia, you are MADE for this. You ARE an Ironwoman. Your life has been one big Ironman event and you have always been prepared to do this. You were born to do this."
Sounds crazy, but she was right. Through every major challenge in my life, exercise has brought me through to the other side, stronger than ever. My faith in God and the realization that He has given me strength to do all things, comes second nature to me.
I don't know what lies ahead. I will always have Crohn's Disease and it can sneak up on me at any moment. I will have more tests later this month to ensure that there is no current hidden damage in my intestines. I will also follow-up for a possible small abdominal hernia. It may require surgery, but I am not going to let myself worry about that until I am told it is an issue.
I plan on being at the start line of Ironman Texas on May 21st in The Woodlands, if the good Lord allows me. Along with 2000 other athletes, I will attempt to once again swim 2.4 miles, bike 112 miles, and run 26.2 miles.
It might sound crazy to some, but for me, it is a comforting thought to know that my body is still strong. I am constantly in training to fight this disease. My chances are better if I am in phenomenal physical and emotional shape. For me, this means endurance training. It's deeply engrained in my heart and soul. I know that some of you will never understand this, and that is okay. For the worriers out there, I promise to continue listening to my body.
But I WON'T keep "walking on eggshells". I WILL keep doing the things I love so that I can be a better wife, mother, friend, nurse, and coach.
For now, I will enjoy this mountain top, and try not to worry about what the future might hold.
I will enjoy TODAY and the good health and energy I have. I will make the best of each moment with my children and my family.
Are you currently on a mountain top, but afraid to enjoy each moment out of fear that something bad is sure to come? Does it seem like any time you come upon good times, rough times are sure to follow? Are you constantly holding your breath to see what comes next?
Let's remind one another not to forget to ENJOY our mountain tops. Savor each moment and seize the day. We should not worry about tomorrow, as it only interferes with our ability to cherish today.
"Let the good times roll...."
So overall, life is REALLY good here. I have more energy to spend quality time with my family. I absolutely love being able to spend more time with my boys and less time sick in bed. Spending the days playing with them instead of doubled over in pain or fighting nausea and flu symptoms, is a welcomed change.
Physically, I have recovered 100% from major surgery in September. My fitness level is currently exceeding my expectations and I feel better than ever. I am cautiously training for my second Ironman in May. I will let my health be a guide as to how much I can push and whether or not I will go that distance. I am enjoying training and absolutely love my work as a fitness instructor, personal trainer, and coach.
I have finally had the energy to put back into my coaching business, "Finish Strong". I have branched out to accommodate body fat composition testing and personal fitness consultations in addition to triathlon coaching. I absolutely LOVE helping people reach their fitness goals.
So why is it that even though life is going SUPER right now, I still feel like I am walking on eggshells? Why do I feel like any moment the dreaded fatigue and pain is going to come back with a vengeance? I am still hesitant to plan too far out in the future. I am just starting to trust myself again and that I am able to fulfill commitments or appointments. The good days have outnumbered the bad now for 6 weeks. Will my streak of good health end soon?
I keep telling myself this time is different. Last year at this time, I was living (unaware) that eight inches of my intestines were destroyed from Crohn's. Essentially, that equates to walking around with a partially dead gut. Pretty gross if you think about it. I would have horrible bouts of nausea, dizziness, abdominal pain and fatigue. I was on all the right medications, but they were not helping because the diseased intestine was scarred beyond repair. There was days I would literally lay flat on the floor and not be able to move until my husband brought me a cocktail of medicine. Thank God, we have not seen any of those days since my surgery.
In fact, at that time I was only able to eat certain foods. I called them the "foods within my box" to my friends. I lived on wheat bagels with peanut butter and honey. I could eat sweets and starches because they were easy to digest. All of the healthy things like fruits and vegetables were out of the question. My body views those things as "foreign" and starts attacking the lining of my gut. I now drink daily protein shakes with an addition of "super greens" to fulfill my nutritional needs.
Meats were also out of the question. Now we know why...when you have a damaged, flat intestine the opening is about the size of the eye of a needle. Food just isn't going to pass.
Come to find out, that is the reason why I struggled during my very first Ironman in Utah, last May. I was very prepared for the race and the distances were not a problem. I had assumed that my issues were due to the fact that I lost some of my medication during the beginning of the bike ride. I now know that the bagel I ate in T1 (after swallowing lots of air while swimming out in the frigid water), was going to give me hours of trouble over the course of a 15-hour event because of the severe stricture in my ileum. In fact, I would spend hours on the bike barely able to maintain aero position because of pain. My abdomen appeared as though I was 5 months pregnant. Forcing down food was not even an option.
I was fortunate to make it through the race, since nutrition was a big issue for me. I survived on Cytomax and easily digested foods like pretzels, chips, and Gu chomps. The scenery during the race was absolutely amazing. Utah is a beautiful state. I spent much time on the bike reflecting on the cards I had been dealt the past few months before the race. Not many patients newly diagnosed with Crohn's Disease are able to attempt an Ironman event. My physicians both said, "it just doesn't happen". My family physician and friend later confided in me that he did not think I would be able to do it.
I knew this was a chance of a lifetime for me, and I savored every moment, despite the pain. I learned a lot about myself that day. I learned just how strong I really was, both physically and mentally. I listened to my body and despite the abdominal pain, my vital signs were stable and I felt great. I had a physician called to meet me in T2 for evaluation to ensure that it was safe for me to continue the marathon. We both agreed that while it was likely my Crohn's acting up, my heart rate was perfect, and I was hydrated well. I continued on and finished the race feeling strong. I was disappointed that I was way off my training pace, but numerous stops from the pain and meeting with a physician, took time.
So, if we flash forward a year later, I am in training again. I never thought I would do another Ironman, but I am on track to complete number two in May.
I am at home in the water, on my bike, and on a long run. I feel absolutely no stress, just peace. My heart rate is constantly monitored and I "listen" for any aches and pains. I love to feel each muscle working to propel me forward. With each breath, I am just thankful to be alive and doing something I enjoy so much.
I will never forget what one of my close friends told me. She said, "Marcia, you are MADE for this. You ARE an Ironwoman. Your life has been one big Ironman event and you have always been prepared to do this. You were born to do this."
Sounds crazy, but she was right. Through every major challenge in my life, exercise has brought me through to the other side, stronger than ever. My faith in God and the realization that He has given me strength to do all things, comes second nature to me.
I don't know what lies ahead. I will always have Crohn's Disease and it can sneak up on me at any moment. I will have more tests later this month to ensure that there is no current hidden damage in my intestines. I will also follow-up for a possible small abdominal hernia. It may require surgery, but I am not going to let myself worry about that until I am told it is an issue.
I plan on being at the start line of Ironman Texas on May 21st in The Woodlands, if the good Lord allows me. Along with 2000 other athletes, I will attempt to once again swim 2.4 miles, bike 112 miles, and run 26.2 miles.
It might sound crazy to some, but for me, it is a comforting thought to know that my body is still strong. I am constantly in training to fight this disease. My chances are better if I am in phenomenal physical and emotional shape. For me, this means endurance training. It's deeply engrained in my heart and soul. I know that some of you will never understand this, and that is okay. For the worriers out there, I promise to continue listening to my body.
But I WON'T keep "walking on eggshells". I WILL keep doing the things I love so that I can be a better wife, mother, friend, nurse, and coach.
For now, I will enjoy this mountain top, and try not to worry about what the future might hold.
I will enjoy TODAY and the good health and energy I have. I will make the best of each moment with my children and my family.
Are you currently on a mountain top, but afraid to enjoy each moment out of fear that something bad is sure to come? Does it seem like any time you come upon good times, rough times are sure to follow? Are you constantly holding your breath to see what comes next?
Let's remind one another not to forget to ENJOY our mountain tops. Savor each moment and seize the day. We should not worry about tomorrow, as it only interferes with our ability to cherish today.
"Let the good times roll...."
Wednesday, January 12, 2011
The Girl With 9 Lives...
Writing this blog has proven to be therapeutic for me. I have encountered some extremely strange things over the years. I have lived through more in my 37 years, than some people will in a lifetime. Every now and again, I have to wonder why my life has been spared so many times. I kind of feel like a cat with 9 lives! I do know, however, that one day my luck will run out. I also know that I am ready for that day, whether it comes tomorrow or in 60 years.
Besides writing for self-therapy (ha!), I also want to provide my sons with something to read from me one day. Living with a serious health issue causes me to confront the possibility of dying young, more so than I would like. However, I also know that any one of us could get hit by a train tomorrow. Life has a way of ending suddenly like that. I know because mine has almost ended suddenly like that on more than one occasion.
What I am about to disclose is a bizarre situation. It is indeed purely fact, and not fiction. Those closest to me have heard the story. I still can't quite believe it happened, but it is encounters such as follows, that force me outside of my "comfort zone" and into the world of blogging/writing to journal my experiences.
It was the fall of 1991. I was a freshman at the University of Texas at San Antonio. My parents and I decided for me to attend college somewhere close to them, as I tended to have a few health issues. We know now, that my Crohn's Disease has probably played a role in my life for many years.
In any case, my parents had just moved to Laredo, TX for a short time after I graduated high school. My dad played a huge part in the development and expansion of IBC (International Bank of Commerce). He and my mother were to live in Laredo for a few months, and then relocate to San Antonio where my father would run the bank's service center.
It may have been my first trip "home" since leaving for college. You know how that goes. You are having such a grand time with your new life and new friends, that mom and dad are seldom missed.
In any case, I was ready to see my parents for the weekend, and heading out of San Antonio a little later than planned. This was back before the days when everyone had a cell phone. I was driving my first car (Nissan Sentra) and enjoying the easy, 2.5 hour drive down to Laredo.
Suddenly, my car sputtered to a stop. The air smelled funny and there was smoke coming out of the front hood. The moment was surreal. It was starting to get dark outside, and I was in disbelief that this could have just happened. I waited in the car for a few minutes contemplating my next step. I recalled wondering if I should make a sign to post in the window, saying I needed help, or WHAT?! This sounds like a silly idea, but I tell you, when I looked out the window, it looked like a ghost town. I could not see any signs of civilization within my eye sight. I had a deep, sinking feeling in my gut. I knew this night might not end well. Stepping outside of my car and looking around again, I realized this looked just like a person's worst nightmare.
I waited for a good half hour, hoping that a police officer might drive by. I saw one older man, driving a truck full of watermelons pass by me. In hindsight, I wish I would have asked HIM for a ride. Instead, I waited for a bit longer, but as it grew darker, I became concerned.
Finally, a dirty white pick-up truck approached me heading north. There were two men in the truck. I glanced at the back of their pick-up and asked if they could give me a ride to the nearest pay phone. They laughed and said sure, it was about 2 miles up the road. I guess in my head, I thought I would ride in the back of the truck if it was just a ways down the road. Instead, I found myself getting in the front of the truck with the two strangers.
Not only was I now IN the truck with two complete strangers, but there was a cooler sitting between the driver and the other male passenger. I was forced to sit up against the cooler, and realized all too quickly that this strange man would be sitting WAY too close for my comfort. The men began to converse in Spanish. I had taken a few years of Spanish in high school, but did not have the ability to translate what they were saying. They were speaking quite fast. I did notice that we had just passed by a gas station. I asked about stopping, reminding them that I needed to use the pay phone to call my parents. My heart sank deeper and deeper.
I will never forget the disgusting face of the man who sat next to me. He was in my space and breathing in my face. His first sentence to me in English was, "You are such a pretty girl, why would you get in the car with people you don't know?". I tried my best not to panic, but fear was setting in. Even as I write this, my heart is beginning to beat faster. I can almost smell the dirty truck and the filthy men inside of it.
My head was spinning. The next words I heard were: "You will be staying with us tonight. Would you like that?". I was in shock. I couldn't move or speak. I just shook my head, no. Suddenly, the man placed his hand upon my leg. He told me again how pretty I was and asked if he could touch my leg. I shook my head, yet he placed his hand on my thigh. The next question he asked, was if he could kiss me. He began to talk about how I would stay the night with them at their hotel and they would take good care of me.
Right then and there, my life literally flashed before my eyes. Just like you read about in stories or watch in movies. There it was: my life flashing before my eyes on fast forward. At that moment, I remember thinking that I would be raped for sure, but how would they kill me? I memorized every detail of that dirty truck. I listened to the men talking in Spanish over my head. I imagined that they were plotting what to do with me. The driver was a younger man, maybe in his mid-20's. He looked at me a few times. Did I catch a glimmer of compassion in his eyes? I thought that I did. Perhaps a trace. I gave him a pleading look. Spare me. Please! The stranger to my right slid his hand up my thigh and grabbed my hand.
My head was spinning so fast, I felt like I couldn't breathe. I began to hyperventilate, and fought back vomiting. I began to do the only thing I could think of doing. I began to pray. I cried out, not knowing what I was saying. I remember calling out for God to help me, save me, spare me...
Then the anger set in, the fighting instinct that I will have until the day I die, came to life. I began to breathe deep and once again memorized every detail of the truck. We were passing by yet another small city. I knew this meant war. They were not going to stop and let me out.
I will never forget what happened next. I made eye contact with the driver once more. YES! I DID see a glimpse of compassion in his eyes. Something passed between us that moment. I will always be grateful for the sympathy he had, and the grace that he delivered at that moment. He suddenly slowed down in the middle of the highway. I knew this was my chance. I took it. With all my might, I elbowed the man next to me in the stomach. I lunged toward the door, opened it and toppled out. My head still spinning, and my legs shaking, I pulled myself up and ran like there was no tomorrow.
I ran down some sort of grassy incline. I would later find scratches from thorns and gravel on my legs. I came across a small convenience store. I burst into the store and felt like angels had been placed in my path. An older couple (I found out later they owned the store), approached me. The man asked, "Honey, are you alright? No, you are NOT.". His wife embraced me as he called the police. I cried with relief and from sheer exhaustion. We placed a call to my parents to come and get me.
I was only 17, and had to endure a rigorous interviewing from the police about whether or not I was touched or raped. Thank God, I was not. They took a description of the men and the truck and left to pursue them.
The incident was terrifying, yet also embarrassing. I told few people. I realize now that I dealt with post-traumatic stress syndrome after the ordeal. I would wake up in the night seeing the man's face up close to mine, feel his hand on my knee. My heart would be racing and I would be drenched in sweat. Almost every time I closed my eyes, for nights on end, I would see their faces. I would hear them telling me that I would be staying with them....Even writing this 20 years later, I still feel the fear, and remember it like it was yesterday. But I need to revisit times like these every now and again. It is a good reminder of the second chance that I was given. What a gift. A precious gift.
If your life has been spared, have you ever stopped to think about what you will do with your second chance? Are you living a life worthy of the second chance you were given? If I am honest with myself, the answer is "no", not always. May I be more mindful of the words that I say, the way that I love, and how much I laugh and enjoy the small things in life.
You may not even know about a close call you had, or a time you should have been dealt your last hand. Perhaps you were spared and don't even realize it. We should live each day as it might be our last. Creating a legacy for those we leave behind.
As 2011 begins, may I remember one of my "9 lives" experiences, and grow from it. Never taking my second chance lightly, but instead embracing it, and listening to what it is I am called to do in this life.
Besides writing for self-therapy (ha!), I also want to provide my sons with something to read from me one day. Living with a serious health issue causes me to confront the possibility of dying young, more so than I would like. However, I also know that any one of us could get hit by a train tomorrow. Life has a way of ending suddenly like that. I know because mine has almost ended suddenly like that on more than one occasion.
What I am about to disclose is a bizarre situation. It is indeed purely fact, and not fiction. Those closest to me have heard the story. I still can't quite believe it happened, but it is encounters such as follows, that force me outside of my "comfort zone" and into the world of blogging/writing to journal my experiences.
It was the fall of 1991. I was a freshman at the University of Texas at San Antonio. My parents and I decided for me to attend college somewhere close to them, as I tended to have a few health issues. We know now, that my Crohn's Disease has probably played a role in my life for many years.
In any case, my parents had just moved to Laredo, TX for a short time after I graduated high school. My dad played a huge part in the development and expansion of IBC (International Bank of Commerce). He and my mother were to live in Laredo for a few months, and then relocate to San Antonio where my father would run the bank's service center.
It may have been my first trip "home" since leaving for college. You know how that goes. You are having such a grand time with your new life and new friends, that mom and dad are seldom missed.
In any case, I was ready to see my parents for the weekend, and heading out of San Antonio a little later than planned. This was back before the days when everyone had a cell phone. I was driving my first car (Nissan Sentra) and enjoying the easy, 2.5 hour drive down to Laredo.
Suddenly, my car sputtered to a stop. The air smelled funny and there was smoke coming out of the front hood. The moment was surreal. It was starting to get dark outside, and I was in disbelief that this could have just happened. I waited in the car for a few minutes contemplating my next step. I recalled wondering if I should make a sign to post in the window, saying I needed help, or WHAT?! This sounds like a silly idea, but I tell you, when I looked out the window, it looked like a ghost town. I could not see any signs of civilization within my eye sight. I had a deep, sinking feeling in my gut. I knew this night might not end well. Stepping outside of my car and looking around again, I realized this looked just like a person's worst nightmare.
I waited for a good half hour, hoping that a police officer might drive by. I saw one older man, driving a truck full of watermelons pass by me. In hindsight, I wish I would have asked HIM for a ride. Instead, I waited for a bit longer, but as it grew darker, I became concerned.
Finally, a dirty white pick-up truck approached me heading north. There were two men in the truck. I glanced at the back of their pick-up and asked if they could give me a ride to the nearest pay phone. They laughed and said sure, it was about 2 miles up the road. I guess in my head, I thought I would ride in the back of the truck if it was just a ways down the road. Instead, I found myself getting in the front of the truck with the two strangers.
Not only was I now IN the truck with two complete strangers, but there was a cooler sitting between the driver and the other male passenger. I was forced to sit up against the cooler, and realized all too quickly that this strange man would be sitting WAY too close for my comfort. The men began to converse in Spanish. I had taken a few years of Spanish in high school, but did not have the ability to translate what they were saying. They were speaking quite fast. I did notice that we had just passed by a gas station. I asked about stopping, reminding them that I needed to use the pay phone to call my parents. My heart sank deeper and deeper.
I will never forget the disgusting face of the man who sat next to me. He was in my space and breathing in my face. His first sentence to me in English was, "You are such a pretty girl, why would you get in the car with people you don't know?". I tried my best not to panic, but fear was setting in. Even as I write this, my heart is beginning to beat faster. I can almost smell the dirty truck and the filthy men inside of it.
My head was spinning. The next words I heard were: "You will be staying with us tonight. Would you like that?". I was in shock. I couldn't move or speak. I just shook my head, no. Suddenly, the man placed his hand upon my leg. He told me again how pretty I was and asked if he could touch my leg. I shook my head, yet he placed his hand on my thigh. The next question he asked, was if he could kiss me. He began to talk about how I would stay the night with them at their hotel and they would take good care of me.
Right then and there, my life literally flashed before my eyes. Just like you read about in stories or watch in movies. There it was: my life flashing before my eyes on fast forward. At that moment, I remember thinking that I would be raped for sure, but how would they kill me? I memorized every detail of that dirty truck. I listened to the men talking in Spanish over my head. I imagined that they were plotting what to do with me. The driver was a younger man, maybe in his mid-20's. He looked at me a few times. Did I catch a glimmer of compassion in his eyes? I thought that I did. Perhaps a trace. I gave him a pleading look. Spare me. Please! The stranger to my right slid his hand up my thigh and grabbed my hand.
My head was spinning so fast, I felt like I couldn't breathe. I began to hyperventilate, and fought back vomiting. I began to do the only thing I could think of doing. I began to pray. I cried out, not knowing what I was saying. I remember calling out for God to help me, save me, spare me...
Then the anger set in, the fighting instinct that I will have until the day I die, came to life. I began to breathe deep and once again memorized every detail of the truck. We were passing by yet another small city. I knew this meant war. They were not going to stop and let me out.
I will never forget what happened next. I made eye contact with the driver once more. YES! I DID see a glimpse of compassion in his eyes. Something passed between us that moment. I will always be grateful for the sympathy he had, and the grace that he delivered at that moment. He suddenly slowed down in the middle of the highway. I knew this was my chance. I took it. With all my might, I elbowed the man next to me in the stomach. I lunged toward the door, opened it and toppled out. My head still spinning, and my legs shaking, I pulled myself up and ran like there was no tomorrow.
I ran down some sort of grassy incline. I would later find scratches from thorns and gravel on my legs. I came across a small convenience store. I burst into the store and felt like angels had been placed in my path. An older couple (I found out later they owned the store), approached me. The man asked, "Honey, are you alright? No, you are NOT.". His wife embraced me as he called the police. I cried with relief and from sheer exhaustion. We placed a call to my parents to come and get me.
I was only 17, and had to endure a rigorous interviewing from the police about whether or not I was touched or raped. Thank God, I was not. They took a description of the men and the truck and left to pursue them.
The incident was terrifying, yet also embarrassing. I told few people. I realize now that I dealt with post-traumatic stress syndrome after the ordeal. I would wake up in the night seeing the man's face up close to mine, feel his hand on my knee. My heart would be racing and I would be drenched in sweat. Almost every time I closed my eyes, for nights on end, I would see their faces. I would hear them telling me that I would be staying with them....Even writing this 20 years later, I still feel the fear, and remember it like it was yesterday. But I need to revisit times like these every now and again. It is a good reminder of the second chance that I was given. What a gift. A precious gift.
If your life has been spared, have you ever stopped to think about what you will do with your second chance? Are you living a life worthy of the second chance you were given? If I am honest with myself, the answer is "no", not always. May I be more mindful of the words that I say, the way that I love, and how much I laugh and enjoy the small things in life.
You may not even know about a close call you had, or a time you should have been dealt your last hand. Perhaps you were spared and don't even realize it. We should live each day as it might be our last. Creating a legacy for those we leave behind.
As 2011 begins, may I remember one of my "9 lives" experiences, and grow from it. Never taking my second chance lightly, but instead embracing it, and listening to what it is I am called to do in this life.
Life In The Slow Lane
Last night, I set out to enjoy a nice, relaxing long swim. I had downloaded some great music to keep me in the appropriate zone. After a hard run session earlier, I was really looking forward to an easy swim. My warm-up went well and just as I was settling into a nice rhythm, I was surrounded by testosterone.
Yes, I mean MEN. The lap lanes were fairly crowded (which is why I typically go in the early afternoon), and there were men splashing around on each side of me. I offered one guy waiting his turn to "swim in" with me. He looked fairly athletic so I guessed that he might understand the concept. He did not. He swam in one half of the lane, while I cramped myself in the other half. I was about to stop and ask suggest we "circle swim", but decided to just tough it out.
I have learned over the years as a female triathlete, that men cannot seem to stand it if you can swim faster than them in the pool (or bike faster, or run faster..!). I can be minding my own business in a nice, steady, (slow), rhythm when testosterone takes over. This happened last night. Nearly every 100yards, I would have one of the guys start at the same time as me and sprint his way to the other side of the pool. He was obviously wanting to "beat" me, only I was not racing.
The first few times I let them go zipping past me, refusing to get out of my zone. About the fourth or fifth time, I couldn't resist. I am almost always up for a challenge! :)
Needless to say, this began a war of who could swim faster than whom. My comfortable workout turned into an all out race to see how many times I could beat these guys as they raced their ONE length down the pool. I enjoyed the push for a few times, but quickly realized they were taking turns "racing" me.
I was getting tired. Tired AND annoyed. I gave it a few more hundred yards of pushing, and then realized it was almost time to get out. I had pushed almost my entire 50-minute session. My HR was higher than I had wanted it and I had defeated my whole purpose of having a nice "relaxing" long swim.
Later on, I pondered what had happened. I can laugh at myself as an athlete and coach. I know better than to fall into the trap of letting someone else challenge or push you, especially when you are wanting a relaxing workout. I tell my athletes not to let this happen to them, yet do their OWN thing and ignore the other person. They may be doing their 25 yard sprints (like last night), while you are doing your long, aerobic swim. Therefore, you can't compare "apples to apples".
This applies to our daily lives as well. How many times are we smooth sailing on cruise control, when someone comes in and "challenges" us? How many times do we fall for the "challenge" as a detriment to ourselves or perhaps our families?
Perhaps you were cruising along on a modest budget and saving money, when your neighbor comes zipping by with his fancy car. On top of that, he or she also dresses in the latest fashion. He has a brand new house twice the size of yours.
Will you abandon your plans to "chase" and "catch" him? Will you sacrifice what you know is best for you, just to try and "play the game" with someone else?
REMEMBER...we are all in different "lanes". One person's goal may not be another person's goal. Take the time to reach yours. Slowly and steadily moving towards YOUR goals and dreams, at YOUR pace. When you try to compete with others in another lane, you are likely to drift off your own personal course, at a detriment to yourself. Sometimes this ruins your initial plan, and can cause strife or heartache.
Stay focused on what you know and believe to be true and just. Let those in the fast lane move right ahead. Chances are, they will run out of steam, crash and burn, and you will find yourself in the lead because you stuck with your game plan!
Don't get me wrong, my athletes, there is absolutely NOTHING wrong with a little friendly competition. It is encouraged and good for you at times. But when it comes down to tough training, or the "game of life", choose carefully with whom and when you choose to compete.
There is a master plan for your life, and it's already been laid out for you by a power much greater than man. Take your time to find the right course for YOU, and enjoy each "stroke" along the way. Don't be affected by those around you. Stay focused and enjoy "life in the slow" lane. It's really not half bad! :)
Yes, I mean MEN. The lap lanes were fairly crowded (which is why I typically go in the early afternoon), and there were men splashing around on each side of me. I offered one guy waiting his turn to "swim in" with me. He looked fairly athletic so I guessed that he might understand the concept. He did not. He swam in one half of the lane, while I cramped myself in the other half. I was about to stop and ask suggest we "circle swim", but decided to just tough it out.
I have learned over the years as a female triathlete, that men cannot seem to stand it if you can swim faster than them in the pool (or bike faster, or run faster..!). I can be minding my own business in a nice, steady, (slow), rhythm when testosterone takes over. This happened last night. Nearly every 100yards, I would have one of the guys start at the same time as me and sprint his way to the other side of the pool. He was obviously wanting to "beat" me, only I was not racing.
The first few times I let them go zipping past me, refusing to get out of my zone. About the fourth or fifth time, I couldn't resist. I am almost always up for a challenge! :)
Needless to say, this began a war of who could swim faster than whom. My comfortable workout turned into an all out race to see how many times I could beat these guys as they raced their ONE length down the pool. I enjoyed the push for a few times, but quickly realized they were taking turns "racing" me.
I was getting tired. Tired AND annoyed. I gave it a few more hundred yards of pushing, and then realized it was almost time to get out. I had pushed almost my entire 50-minute session. My HR was higher than I had wanted it and I had defeated my whole purpose of having a nice "relaxing" long swim.
Later on, I pondered what had happened. I can laugh at myself as an athlete and coach. I know better than to fall into the trap of letting someone else challenge or push you, especially when you are wanting a relaxing workout. I tell my athletes not to let this happen to them, yet do their OWN thing and ignore the other person. They may be doing their 25 yard sprints (like last night), while you are doing your long, aerobic swim. Therefore, you can't compare "apples to apples".
This applies to our daily lives as well. How many times are we smooth sailing on cruise control, when someone comes in and "challenges" us? How many times do we fall for the "challenge" as a detriment to ourselves or perhaps our families?
Perhaps you were cruising along on a modest budget and saving money, when your neighbor comes zipping by with his fancy car. On top of that, he or she also dresses in the latest fashion. He has a brand new house twice the size of yours.
Will you abandon your plans to "chase" and "catch" him? Will you sacrifice what you know is best for you, just to try and "play the game" with someone else?
REMEMBER...we are all in different "lanes". One person's goal may not be another person's goal. Take the time to reach yours. Slowly and steadily moving towards YOUR goals and dreams, at YOUR pace. When you try to compete with others in another lane, you are likely to drift off your own personal course, at a detriment to yourself. Sometimes this ruins your initial plan, and can cause strife or heartache.
Stay focused on what you know and believe to be true and just. Let those in the fast lane move right ahead. Chances are, they will run out of steam, crash and burn, and you will find yourself in the lead because you stuck with your game plan!
Don't get me wrong, my athletes, there is absolutely NOTHING wrong with a little friendly competition. It is encouraged and good for you at times. But when it comes down to tough training, or the "game of life", choose carefully with whom and when you choose to compete.
There is a master plan for your life, and it's already been laid out for you by a power much greater than man. Take your time to find the right course for YOU, and enjoy each "stroke" along the way. Don't be affected by those around you. Stay focused and enjoy "life in the slow" lane. It's really not half bad! :)
Thursday, January 6, 2011
Coin Toss
I think one of the hardest things about having Crohn's Disease is that you feel like your life is sort of a coin toss. It's hard to plan ahead from one day to the next when you don't know how you will wake up feeling. Mornings seem to be worse for myself and a couple of my fellow Crohnie's. For some reason, getting out of bed in the mornings can be a tough mountain to climb.
Now, I know that morning time is rough for LOTS of people. Don't get me wrong! But this feeling is different. We may have slept for eight hours or for fifteen hours, and we wake up feeling like we got hit by a Mac truck. It's not just your average, "I am tired and don't want to get out of bed feeling." It's more like, "Good Lord, what has hit me? I cannot move a muscle." I also like to relate it to taking Nyquil when you have a bad cold. We wake up with a "Crohn's" haze. Head spinning and groggy with achy joints. Takes us about an hour to really wake up and get moving. Some days (most days), we may even need to take a nap for several hours. When we wake up, guess what? Still the same feeling. No bueno.
I can tell that I am getting better because my haze wears off after just an hour these days. At that point, I actually feel like a productive member of society and can get up and function. I am also needing less naps. Just a few weeks ago, it was literally a coin toss on whether or not I would feel that way ALL day and for several days, or just for another hour or two in the mornings. Or I might have a good afternoon and then get hit by "the haze" again in the evening.
I am starting to see less of the haze these days, and I am incredibly thankful. Of course, it's a cautious type of optimism. I still don't trust myself quite yet. It's been almost three weeks without "crashing"and for me, that is a record. I still nap when I can, and try to get at least eight hours of sleep each night.
Living life with a state of health that is always up in a coin toss is less than ideal. You constantly feel like you are letting down your friends and family when you have to cancel activities. You are afraid to plan anything because the moment you plan something important, Mr. Crohn's jumps in and zaps your energy. I could go on about the inconveniences, but I won't. This is not a pity party, and I certainly don't feel sorry for myself.
I will ask the following of you: If you have good health and it's pretty predictable, please be thankful. Never take for granted the fact that you have energy to expend or are living pain-free. I have talked with fellow Crohnie's about how awesome it is to wake up on the "energy" side of the coin toss. Boy, do we run with it. We never know when we will have a good day again so we cherish each moment, sometimes going overboard and then paying for it later.
Also, be thankful if you can eat anything you want without your body protesting. Next time you eat a nice big vegetable or fruit salad, think of a "Crohnie" or think of ME and say, "this one's for you!".
On a more positive note, I had a magnificent long bike ride today. My body cooperated and I felt great during and afterward. My heart rate stayed in the perfect zone, and all nutrition stayed where it was supposed to without any adverse side effects. :) Exercise plays a huge factor in fighting fatigue. It is incredibly therapeutic.
For all those exercise skeptics, you should give it a try. It is better than any anti-depressant on the market and is rejuvenating. I feel most at ease on a long bike ride or long run. I become truly in touch with myself. I clear my mind of any negative thoughts or emotions, and just appreciate "being". Loving the fact that afterward I feel completely de-stressed and ready to conquer anything. My mood is always enhanced, and it adds a spring in my step. The physical rewards are also bountiful, and a strong body stands a much better chance against illness/disease as we age.
So...nothing terribly insightful from me today. Just hoping this is the beginning of some predictable days, and the end of my "coin toss" era. Either way, whatever comes my way.....I am ready.
Now, I know that morning time is rough for LOTS of people. Don't get me wrong! But this feeling is different. We may have slept for eight hours or for fifteen hours, and we wake up feeling like we got hit by a Mac truck. It's not just your average, "I am tired and don't want to get out of bed feeling." It's more like, "Good Lord, what has hit me? I cannot move a muscle." I also like to relate it to taking Nyquil when you have a bad cold. We wake up with a "Crohn's" haze. Head spinning and groggy with achy joints. Takes us about an hour to really wake up and get moving. Some days (most days), we may even need to take a nap for several hours. When we wake up, guess what? Still the same feeling. No bueno.
I can tell that I am getting better because my haze wears off after just an hour these days. At that point, I actually feel like a productive member of society and can get up and function. I am also needing less naps. Just a few weeks ago, it was literally a coin toss on whether or not I would feel that way ALL day and for several days, or just for another hour or two in the mornings. Or I might have a good afternoon and then get hit by "the haze" again in the evening.
I am starting to see less of the haze these days, and I am incredibly thankful. Of course, it's a cautious type of optimism. I still don't trust myself quite yet. It's been almost three weeks without "crashing"and for me, that is a record. I still nap when I can, and try to get at least eight hours of sleep each night.
Living life with a state of health that is always up in a coin toss is less than ideal. You constantly feel like you are letting down your friends and family when you have to cancel activities. You are afraid to plan anything because the moment you plan something important, Mr. Crohn's jumps in and zaps your energy. I could go on about the inconveniences, but I won't. This is not a pity party, and I certainly don't feel sorry for myself.
I will ask the following of you: If you have good health and it's pretty predictable, please be thankful. Never take for granted the fact that you have energy to expend or are living pain-free. I have talked with fellow Crohnie's about how awesome it is to wake up on the "energy" side of the coin toss. Boy, do we run with it. We never know when we will have a good day again so we cherish each moment, sometimes going overboard and then paying for it later.
Also, be thankful if you can eat anything you want without your body protesting. Next time you eat a nice big vegetable or fruit salad, think of a "Crohnie" or think of ME and say, "this one's for you!".
On a more positive note, I had a magnificent long bike ride today. My body cooperated and I felt great during and afterward. My heart rate stayed in the perfect zone, and all nutrition stayed where it was supposed to without any adverse side effects. :) Exercise plays a huge factor in fighting fatigue. It is incredibly therapeutic.
For all those exercise skeptics, you should give it a try. It is better than any anti-depressant on the market and is rejuvenating. I feel most at ease on a long bike ride or long run. I become truly in touch with myself. I clear my mind of any negative thoughts or emotions, and just appreciate "being". Loving the fact that afterward I feel completely de-stressed and ready to conquer anything. My mood is always enhanced, and it adds a spring in my step. The physical rewards are also bountiful, and a strong body stands a much better chance against illness/disease as we age.
So...nothing terribly insightful from me today. Just hoping this is the beginning of some predictable days, and the end of my "coin toss" era. Either way, whatever comes my way.....I am ready.
Tuesday, January 4, 2011
A Bitter Pill To Swallow
These last two weeks I have felt so "normal", I have almost forgotten that I am still not out of the woods. I guess in reality, I never will be. That part is a tough pill to swallow. And speaking of tough pills to swallow, I will be swallowing another camera pill soon.
At least I will be swallowing the "trial" pill again. The last time Dr. A and I gave this a whirl, I became one of the very few patients he has seen who did not naturally "pass" the trial pill. About five hours after I ingested the pill, I got violently ill. I won't go into detail because you can use your imagination to figure out how a gigantic pill would feel lodged in your intestines. I will say, thank God, the pill was designed to disintegrate. It took a few days before it collapsed and then dissolved, resolving my symptoms of a small bowel obstruction.
So yes, I met with Dr. A today and we had a nice long chat. He is pleased with my progress. I am one of the "lucky" Crohnie's who had pain arise in EVERY single joint with my Crohn's arthropathy. Even though my intestines were stable, the inflammation hit the joints. But increasing the 6-MP and adding back the Asacol, seems to have done the trick. I feel wonderful. In fact, I feel almost normal except for the fact that I still can't eat anything outside of my comfort zone.
Dr. A says this is just something I will always have to manage for the rest of my life. Every Crohnie is different, and we each have our list of "do's and dont's" when it comes to food.
I had a great meal on Sunday at Babe's chicken, but Lord knows a few hours later, I thought it was going to be the end of me. No more Babe's for this chick! Pun intended. :)
After having eight inches of my small intestine removed in September (this was all diseased, causing the "stricture" that I had for quite some time), we still don't know how the other 20-something feet of small intestines look. The only way to view the whole thing is with the big, bitter camera pill. I will be strapped up to all sorts of monitors for a day, and then Dr. A will have a movie night. He will spend 8-10 hours watching the walls of my intestines and looking for any indication that Mr. Crohn's is now hanging out in the portions that can't be viewed any other way. Sigh.
I would almost rather be an ostrich and stick my head in the sand. I almost don't want to know. Why rock the boat? I am doing so well right now. Why take the chance of the trial pill getting temporarily "stuck" again. (By the way, as a nurse, it was pretty cool to see the pill glowing on my own x-ray when it was trapped!). Or what if they find out that my small intestine is damaged in more places? Will it be time for the biological agents that we have been trying to avoid? Or will it mean I am going to need another surgery in the near future?
I went for a much-needed long swim this afternoon after my appointment. It gave me time to digest a few things. Once again, I am feeling well, but the disease lurks within me. A year ago I would have tried to put off the camera study (wireless capsule endoscopy). Today, I have decided it is better to KNOW for sure what is going on in there. No more secrets, no more wondering. I know that the medications that I am on have side effects that can be lethal. I know that it is highly likely I will develop some sort of cancer from taking these medications, or that the levels will suddenly become toxic to my bone marrow and/or other organs. But for now, my quality of life is good. For now, I feel great.
I am certain about one thing. I am ready to face whatever comes my way. Bring it on. We really don't know how strong we are, until being strong is the only choice that we have.
But we shouldn't be afraid of the unknown. Whether it is a health issue or just an uncertain future, it is better to face our issues head on. Tackle them before they tackle YOU. Fear of the unknown is wasted worry. It causes undesirable stress and turmoil. Find out the facts, come up with solutions, and carry on with life. This is our temporary home and we are never promised another day, so why worry ourselves today?
This is one of my resolutions for 2011. To stay on top of things and face the truth, even when the truth hurts. And sometimes the truth is nothing but a bitter pill to swallow.
Bottoms Up!
At least I will be swallowing the "trial" pill again. The last time Dr. A and I gave this a whirl, I became one of the very few patients he has seen who did not naturally "pass" the trial pill. About five hours after I ingested the pill, I got violently ill. I won't go into detail because you can use your imagination to figure out how a gigantic pill would feel lodged in your intestines. I will say, thank God, the pill was designed to disintegrate. It took a few days before it collapsed and then dissolved, resolving my symptoms of a small bowel obstruction.
So yes, I met with Dr. A today and we had a nice long chat. He is pleased with my progress. I am one of the "lucky" Crohnie's who had pain arise in EVERY single joint with my Crohn's arthropathy. Even though my intestines were stable, the inflammation hit the joints. But increasing the 6-MP and adding back the Asacol, seems to have done the trick. I feel wonderful. In fact, I feel almost normal except for the fact that I still can't eat anything outside of my comfort zone.
Dr. A says this is just something I will always have to manage for the rest of my life. Every Crohnie is different, and we each have our list of "do's and dont's" when it comes to food.
I had a great meal on Sunday at Babe's chicken, but Lord knows a few hours later, I thought it was going to be the end of me. No more Babe's for this chick! Pun intended. :)
After having eight inches of my small intestine removed in September (this was all diseased, causing the "stricture" that I had for quite some time), we still don't know how the other 20-something feet of small intestines look. The only way to view the whole thing is with the big, bitter camera pill. I will be strapped up to all sorts of monitors for a day, and then Dr. A will have a movie night. He will spend 8-10 hours watching the walls of my intestines and looking for any indication that Mr. Crohn's is now hanging out in the portions that can't be viewed any other way. Sigh.
I would almost rather be an ostrich and stick my head in the sand. I almost don't want to know. Why rock the boat? I am doing so well right now. Why take the chance of the trial pill getting temporarily "stuck" again. (By the way, as a nurse, it was pretty cool to see the pill glowing on my own x-ray when it was trapped!). Or what if they find out that my small intestine is damaged in more places? Will it be time for the biological agents that we have been trying to avoid? Or will it mean I am going to need another surgery in the near future?
I went for a much-needed long swim this afternoon after my appointment. It gave me time to digest a few things. Once again, I am feeling well, but the disease lurks within me. A year ago I would have tried to put off the camera study (wireless capsule endoscopy). Today, I have decided it is better to KNOW for sure what is going on in there. No more secrets, no more wondering. I know that the medications that I am on have side effects that can be lethal. I know that it is highly likely I will develop some sort of cancer from taking these medications, or that the levels will suddenly become toxic to my bone marrow and/or other organs. But for now, my quality of life is good. For now, I feel great.
I am certain about one thing. I am ready to face whatever comes my way. Bring it on. We really don't know how strong we are, until being strong is the only choice that we have.
But we shouldn't be afraid of the unknown. Whether it is a health issue or just an uncertain future, it is better to face our issues head on. Tackle them before they tackle YOU. Fear of the unknown is wasted worry. It causes undesirable stress and turmoil. Find out the facts, come up with solutions, and carry on with life. This is our temporary home and we are never promised another day, so why worry ourselves today?
This is one of my resolutions for 2011. To stay on top of things and face the truth, even when the truth hurts. And sometimes the truth is nothing but a bitter pill to swallow.
Bottoms Up!
Cantaloupe Anyone?
I had the most random dream last night. I was eating a cantaloupe, but chewing right through the rind! The rind was tough and thick. It tasted absolutely terrible, but I kept chewing and chewing. I finally got a taste of the sweet fruit inside. It was delicious and refreshing. In my dream, the taste was so vivid. Problem was, I kept having to gnaw through more and more rind, just to get ONE little taste of the fresh cantaloupe inside.
I am actually laughing quite hysterically remembering this dream. Leave it to me to dream about food! I LOVE to eat, so it doesn't surprise me that I had a dream about food. It may have also been a food "guilt trip" dream because I have a cantaloupe sitting in my refrigerator right now that NEEDS to be eaten. It's been sitting there for nearly a week now. So in reality, it was probably haunting me in my dreams! :)
However, the more I pondered this dream, I realized how closely it relates to some situations in our lives.
Sometimes we are going through a "rind" stage. We feel like we are just chewing and chewing without getting anywhere at all. It is no fun at all! We get tired, and the "taste" is not pleasant. Human nature wants to give up. Walk away and be done with it.
But hey! What about being persistent? The taste of success or victory is so sweet. It will have you coming back for more and more. You will eventually crave its flavor and satisfaction. You will want to go back for more.
Whatever life is throwing you today, look PAST the rind and into the "heart of the matter". You may not like the "taste" of what you are going through to get there. You may get weary and want to quit.
Think twice, my friend. There's something better under all of the toughness. There is something sweet and satisfying waiting for you on the other side. Persistence pays off.
Go out and find the inside of your "cantaloupe" today. Now excuse me while I go rescue mine...from the refrigerator! I don't want to start dreaming that I am giving birth to one or something. Analyzing THAT, might pose a challenge.
Happy day, my friends!
I am actually laughing quite hysterically remembering this dream. Leave it to me to dream about food! I LOVE to eat, so it doesn't surprise me that I had a dream about food. It may have also been a food "guilt trip" dream because I have a cantaloupe sitting in my refrigerator right now that NEEDS to be eaten. It's been sitting there for nearly a week now. So in reality, it was probably haunting me in my dreams! :)
However, the more I pondered this dream, I realized how closely it relates to some situations in our lives.
Sometimes we are going through a "rind" stage. We feel like we are just chewing and chewing without getting anywhere at all. It is no fun at all! We get tired, and the "taste" is not pleasant. Human nature wants to give up. Walk away and be done with it.
But hey! What about being persistent? The taste of success or victory is so sweet. It will have you coming back for more and more. You will eventually crave its flavor and satisfaction. You will want to go back for more.
Whatever life is throwing you today, look PAST the rind and into the "heart of the matter". You may not like the "taste" of what you are going through to get there. You may get weary and want to quit.
Think twice, my friend. There's something better under all of the toughness. There is something sweet and satisfying waiting for you on the other side. Persistence pays off.
Go out and find the inside of your "cantaloupe" today. Now excuse me while I go rescue mine...from the refrigerator! I don't want to start dreaming that I am giving birth to one or something. Analyzing THAT, might pose a challenge.
Happy day, my friends!
Monday, January 3, 2011
Deception
The body has an amazing way of compensating. It's miraculous if you think about it. We get a cut, our body heals itself. We don't even have to think about "how" to heal. It just happens. All of the magical things fall right into place, like the platelets clumping together to stop bleeding. For these platelets to even be produced, our bone marrow has to function adequately. Then for the platelets to find their way to the site of injury, the heart has to pump so that they have a transportation system to get to where they need to be. This is just one tiny example, of how well we are designed.
Another thing I find pretty crazy is how your body learns to compensate over time. It does this to protect us from infection, injury, illness, and many other things. This is good and bad, all at the same time. Sometimes we are much sicker than we realize, but on the outside, we appear invincible.
Over the years, I have had hundreds of "spells". I could go from feeling fine to being extremely dizzy and weak. Sometimes these spells were accompanied by severe waves of nausea, and other times not. The sharp pain in my lower right quadrant became expected twice a month, coinciding with the hormonal changes of my menstrual cycle. Knowing I had a history of ovarian cysts, I chalked the pain up to these. Based on my symptoms, it made sense to me. The pain would sometimes knock me out for a day or two. Tylenol did nothing, and I already knew that I could not take anti-inflammatory drugs because they upset my stomach.
My physician visits and frequent visits to the emergency room or "after hours" clinics turned up insignificant. I often heard the same thing: I was incredibly healthy, the perfect picture of health. My heart was strong (a "runner's heart"), my blood pressure was perfect, so on and so forth.
So why is it that I would still go from feeling great, to on my knees from pain and nausea, in a matter of seconds?
Thankfully, I have a great primary care physician. He is a fellow triathlete and friend. He wasn't buying into the fact that I was perfectly healthy. Nor was he buying into the idea that my abdominal pain was purely hormonal. I was suddenly hearing the term "IBD" again for the first time since studying it in nursing school.
I was sent for a CT scan of my abdomen and pelvis. I expected to hear the same results as I had many years ago: fluid around the ovary, suggestive of a resolving cyst. I did guess that this time, the cyst would be of significant size, because the pain was terrible. I was also having one of my "spells". I felt like I had the flu. My body ached all over, but especially deep in my back. I had been down this road many, many times, but this time seemed different.
When I got a phone call from my physician on a Friday evening at 5:30, I knew something was not right. He was very direct in telling me that the scan showed some concern for Crohn's Disease. I was to follow up on Tuesday with a Gastrointestinal physician who would further explore my case. I found myself on Vicodin over the weekend for the extreme joint pain, and spent most of my time in bed.
I met with my "GI" doctor, without realizing it would be the beginning of a very long relationship with him. I would soon find out that he pretty much held my health in his hands. I would come to rely on his medical knowledge and decision-making skills, to secure my overall well-being.
I liked "Dr. A" right off the bat. He was personable, young, well-educated, and seemed to be on top of his game. After viewing my scans, he felt that the next step needed to be a colonoscopy so he could see what was going on inside of my intestines. He was fairly confident that if I did have Crohn's Disease, it would be relatively mild. I was the "picture of health". I looked great, and not ill-appearing as many Crohn's patients tend to look. I had done a Half-Ironman (and felt awesome during and after) just six weeks ago. The post-race recovery was my best yet. I was taking a little time off before beginning my Ironman training in January.
I left the appointment feeling indifferent. Ready to feel better, but not so sure I really had a chronic illness. I felt TOO GOOD to be sick.
A few days later (and a few strings pulled by my GI), I found myself preparing for the ever-so-lovely colonoscopy. The procedure was fairly quick, and I was pretty groggy when I awoke. My husband told me that the news was not good. It appeared I did indeed have Crohn's Disease. I was still in denial. I was placed on high-dose Prednisone and Asacol while we waited for the final results.
Reality hit at my follow-up with Dr. A. The news I would hear was like a tornado blowing through my mind. I really don't remember much of what he said. I just remember him showing me all of the pictures he had taken of my ravaged gut. There were ulcers upon ulcers. Classic Crohn's destruction throughout my intestines. One area that he could not even get to because there was so much inflammation. He suspected that I had a stricture (a narrowing of the intestine caused by inflammation and/or scar tissue).
"Seventy-five percent of Crohn's patients will need surgery within the first few years of diagnosis."
"This is an ugly, ugly, disease. Your life is going to change."
I think my GI was about as shocked as I was with how bad things looked in my intestines. He really had expected mild Crohn's disease. People "like me" were not able to teach fitness classes, or do triathlons and compete at the level that I did. I was supposed to be super sick and weak.
He concluded that I had been compensating for years. I had gotten somewhat "used to" my symptoms. Over time, I had developed an extremely high pain threshold. In addition, being an endurance athlete had (and still does keep) my symptoms under control for many years. Endurance athletes in active training typically have suppressed immune systems. Since part of the treatment for my autoimmune disorder is suppressing my immune system, I had been doing a good job on my own of keeping my symptoms to a minimum for years. This is in part of why I continue to do extremely well in relationship to other Crohn's patients. At least this is my theory! I am currently researching more about endurance athletes who have autoimmune disorders. There are only a handful of us with severe disease that do Ironman events, but so far what I am finding is that our quality of life and symptoms are significantly improved with exercise.
And so it began. I was to become that patient I had studied about in nursing school years ago. The patient who ended up in the hospital every few months with infection or obstruction. The patient who inevitably ended up with a colostomy or ileostomy bag. The patient many nurses were less than thrilled to take care of because these patients were known to be on TONS of medications. They were known to be "hooked" on painkillers/narcotics for chronic pain, and most of the time they had leaky, nasty bags to empty.
Or WAIT.....I didn't have to become that person. I didn't want to become that patient. Even though I felt deceived by my own "strong" body, I KNEW I could depend on it as I always had. I knew, without a doubt, that I would give living a normal, healthy life my very best shot.
I had been in training for years. Always racing, always staying on top of my game, always getting stronger and faster. Why stop now when I am up against the greatest health challenge (so far) in my life? To me, the answer was/is simple: I WON'T stop now. I have too much to lose. I will remain strong and continue preparing my body/temple to fight the battle within. My boys are counting on me!
Another thing I find pretty crazy is how your body learns to compensate over time. It does this to protect us from infection, injury, illness, and many other things. This is good and bad, all at the same time. Sometimes we are much sicker than we realize, but on the outside, we appear invincible.
Over the years, I have had hundreds of "spells". I could go from feeling fine to being extremely dizzy and weak. Sometimes these spells were accompanied by severe waves of nausea, and other times not. The sharp pain in my lower right quadrant became expected twice a month, coinciding with the hormonal changes of my menstrual cycle. Knowing I had a history of ovarian cysts, I chalked the pain up to these. Based on my symptoms, it made sense to me. The pain would sometimes knock me out for a day or two. Tylenol did nothing, and I already knew that I could not take anti-inflammatory drugs because they upset my stomach.
My physician visits and frequent visits to the emergency room or "after hours" clinics turned up insignificant. I often heard the same thing: I was incredibly healthy, the perfect picture of health. My heart was strong (a "runner's heart"), my blood pressure was perfect, so on and so forth.
So why is it that I would still go from feeling great, to on my knees from pain and nausea, in a matter of seconds?
Thankfully, I have a great primary care physician. He is a fellow triathlete and friend. He wasn't buying into the fact that I was perfectly healthy. Nor was he buying into the idea that my abdominal pain was purely hormonal. I was suddenly hearing the term "IBD" again for the first time since studying it in nursing school.
I was sent for a CT scan of my abdomen and pelvis. I expected to hear the same results as I had many years ago: fluid around the ovary, suggestive of a resolving cyst. I did guess that this time, the cyst would be of significant size, because the pain was terrible. I was also having one of my "spells". I felt like I had the flu. My body ached all over, but especially deep in my back. I had been down this road many, many times, but this time seemed different.
When I got a phone call from my physician on a Friday evening at 5:30, I knew something was not right. He was very direct in telling me that the scan showed some concern for Crohn's Disease. I was to follow up on Tuesday with a Gastrointestinal physician who would further explore my case. I found myself on Vicodin over the weekend for the extreme joint pain, and spent most of my time in bed.
I met with my "GI" doctor, without realizing it would be the beginning of a very long relationship with him. I would soon find out that he pretty much held my health in his hands. I would come to rely on his medical knowledge and decision-making skills, to secure my overall well-being.
I liked "Dr. A" right off the bat. He was personable, young, well-educated, and seemed to be on top of his game. After viewing my scans, he felt that the next step needed to be a colonoscopy so he could see what was going on inside of my intestines. He was fairly confident that if I did have Crohn's Disease, it would be relatively mild. I was the "picture of health". I looked great, and not ill-appearing as many Crohn's patients tend to look. I had done a Half-Ironman (and felt awesome during and after) just six weeks ago. The post-race recovery was my best yet. I was taking a little time off before beginning my Ironman training in January.
I left the appointment feeling indifferent. Ready to feel better, but not so sure I really had a chronic illness. I felt TOO GOOD to be sick.
A few days later (and a few strings pulled by my GI), I found myself preparing for the ever-so-lovely colonoscopy. The procedure was fairly quick, and I was pretty groggy when I awoke. My husband told me that the news was not good. It appeared I did indeed have Crohn's Disease. I was still in denial. I was placed on high-dose Prednisone and Asacol while we waited for the final results.
Reality hit at my follow-up with Dr. A. The news I would hear was like a tornado blowing through my mind. I really don't remember much of what he said. I just remember him showing me all of the pictures he had taken of my ravaged gut. There were ulcers upon ulcers. Classic Crohn's destruction throughout my intestines. One area that he could not even get to because there was so much inflammation. He suspected that I had a stricture (a narrowing of the intestine caused by inflammation and/or scar tissue).
"Seventy-five percent of Crohn's patients will need surgery within the first few years of diagnosis."
"This is an ugly, ugly, disease. Your life is going to change."
I think my GI was about as shocked as I was with how bad things looked in my intestines. He really had expected mild Crohn's disease. People "like me" were not able to teach fitness classes, or do triathlons and compete at the level that I did. I was supposed to be super sick and weak.
He concluded that I had been compensating for years. I had gotten somewhat "used to" my symptoms. Over time, I had developed an extremely high pain threshold. In addition, being an endurance athlete had (and still does keep) my symptoms under control for many years. Endurance athletes in active training typically have suppressed immune systems. Since part of the treatment for my autoimmune disorder is suppressing my immune system, I had been doing a good job on my own of keeping my symptoms to a minimum for years. This is in part of why I continue to do extremely well in relationship to other Crohn's patients. At least this is my theory! I am currently researching more about endurance athletes who have autoimmune disorders. There are only a handful of us with severe disease that do Ironman events, but so far what I am finding is that our quality of life and symptoms are significantly improved with exercise.
And so it began. I was to become that patient I had studied about in nursing school years ago. The patient who ended up in the hospital every few months with infection or obstruction. The patient who inevitably ended up with a colostomy or ileostomy bag. The patient many nurses were less than thrilled to take care of because these patients were known to be on TONS of medications. They were known to be "hooked" on painkillers/narcotics for chronic pain, and most of the time they had leaky, nasty bags to empty.
Or WAIT.....I didn't have to become that person. I didn't want to become that patient. Even though I felt deceived by my own "strong" body, I KNEW I could depend on it as I always had. I knew, without a doubt, that I would give living a normal, healthy life my very best shot.
I had been in training for years. Always racing, always staying on top of my game, always getting stronger and faster. Why stop now when I am up against the greatest health challenge (so far) in my life? To me, the answer was/is simple: I WON'T stop now. I have too much to lose. I will remain strong and continue preparing my body/temple to fight the battle within. My boys are counting on me!
Sunday, January 2, 2011
Looking Back....
Wow!
I guess I am "blogging". I suppose this makes me an official "blogger". Never done this before, but I am determined to step out of my comfort zone and give it a shot. People have told me for years that I should write a book after all I have been through in my 37 years on this earth. I certainly don't have the time or the energy to write a book, so this blog will have to suffice. :)
Looking back on 2010, I would have to rank it right up there at the top of my "Most Lousy Years Ever" list. Seriously though. It was. The diagnosis of Crohn's Disease invaded my life in 2010. When I say "invaded" that is precisely what I mean. INVADED. Apparently, I have been living with this intrusion for more than a decade. It reared its ugly head from time to time, but little did I know the damage that was occurring within my body.
Oh YEAH...you know what Crohn's is, right? It's that little disease that upsets your stomach and makes you poop alot. WRONG. "Can't you just watch what you eat?" was one of the most common questions I would face after diagnosis. Ha! WRONG AGAIN. Don't I wish it was as easy as changing my diet? That would have been relatively simple. However, one thing I noticed over the years was that when I increased the amount of fruits and vegetables in my diet, it didn't work out so well.
You see, this silent beast is lurking in my body and will until the day that I die. There is no cure for Mr. Crohn's. He comes and goes as he pleases, attacking my gut and my joints when he feels like making me miserable. My intestines view all sorts of good nourishment (i.e. food) as "foreign". The response is a major inflammatory process, which over time, destroys sections of my intestines. In addition to attacking my intestines, my joints are a favorite hiding place for Mr. Crohn's. He wreaks havoc on every single joint in my body on a bad day. The inflammation becomes so intense, it can knock me to my knees. And I, am one tough cookie! :)
Hence the name, "IronCrohnie" that I picked for this blog. Last May (2010), I joined a little elite group that call ourselves an "Ironman". To earn this title, you must swim 2.4 miles in an open body of water, jump out of the water and get on your bike. You ride for 112-miles, rack your bike, lace of your running shoes, and head out for a marathon (26.2 miles). You must do all of this in 17 hours or less to earn the coveted title of an "Ironman".
Some of you are wondering WHY ON EARTH anyone would be insane enough to subject their body to that kind of torture. To us, we wouldn't have it any other way. We love it, and we live to swim, bike and run.
I found it almost comical that I was struck by the freight train of a disease called, "Crohn's" right about the time I was supposed to be increasing my training volume for my first Ironman competition. Most of you who know me, aren't' surprised. If something bad is going to happen, it happens to me. Like if someone is going to get run over by a trailer, it will happen to ME. And yes, that has happened. I was run over by a trailer in 2005. I will share that story at a later date.
So, 2010 began with a bang. I spent December of 2009 being sicker than ever before in my life. I felt like I had the flu, along with severe back and abdominal pain. I became a patient (and not the nurse like I was used to being). I became a member of the"Chronic Disease for Life" club.
Treatment of Crohn's involves taking medication to suppress one's immune system. The goal is to keep the body from attacking itself, or keeping the inflammatory response down, to avoid further damage from the disease. I now take a low dose of oral chemotherapy, and will for the remainder of my life. The side effects are wonderful. :) I now have hair much thinner than ever before, and with a mind of it's own. Little adjustments to the medications can cause major nausea, fatigue, and headaches for me. However, the most recent increase in medication (two weeks ago) has left me feeling better than I have in the last ten years. I cannot complain, and am grateful.
In any event, despite the diagnosis of Crohn's and despite starting 2010 with taking 24 (yes, 24) pills a day, I continued to train for my Ironman. I would be an "IronCrohnie", that's all.
At that time during my life, I decided NOW more than ever, was the time I needed to be physically and mentally strong/fit. There was no better way (in my warped mind) to do so, than continue down the path that I had already started. I had a commitment to fulfill, and I was going to do it....against all odds! One thing about me is that I do love to prove people wrong. Tell me I can't do something because of my ailments, and I will do them ten times. I will NOT let this disease define me.
I will close for now because it is getting late. My plan is to post a little here and there to share my experiences as an athlete with a chronic illness. I believe that nothing can stop us from achieving our goals and our dreams.
So whatever it is you are "thinking" about doing....what are you waiting for???
I guess I am "blogging". I suppose this makes me an official "blogger". Never done this before, but I am determined to step out of my comfort zone and give it a shot. People have told me for years that I should write a book after all I have been through in my 37 years on this earth. I certainly don't have the time or the energy to write a book, so this blog will have to suffice. :)
Looking back on 2010, I would have to rank it right up there at the top of my "Most Lousy Years Ever" list. Seriously though. It was. The diagnosis of Crohn's Disease invaded my life in 2010. When I say "invaded" that is precisely what I mean. INVADED. Apparently, I have been living with this intrusion for more than a decade. It reared its ugly head from time to time, but little did I know the damage that was occurring within my body.
Oh YEAH...you know what Crohn's is, right? It's that little disease that upsets your stomach and makes you poop alot. WRONG. "Can't you just watch what you eat?" was one of the most common questions I would face after diagnosis. Ha! WRONG AGAIN. Don't I wish it was as easy as changing my diet? That would have been relatively simple. However, one thing I noticed over the years was that when I increased the amount of fruits and vegetables in my diet, it didn't work out so well.
You see, this silent beast is lurking in my body and will until the day that I die. There is no cure for Mr. Crohn's. He comes and goes as he pleases, attacking my gut and my joints when he feels like making me miserable. My intestines view all sorts of good nourishment (i.e. food) as "foreign". The response is a major inflammatory process, which over time, destroys sections of my intestines. In addition to attacking my intestines, my joints are a favorite hiding place for Mr. Crohn's. He wreaks havoc on every single joint in my body on a bad day. The inflammation becomes so intense, it can knock me to my knees. And I, am one tough cookie! :)
Hence the name, "IronCrohnie" that I picked for this blog. Last May (2010), I joined a little elite group that call ourselves an "Ironman". To earn this title, you must swim 2.4 miles in an open body of water, jump out of the water and get on your bike. You ride for 112-miles, rack your bike, lace of your running shoes, and head out for a marathon (26.2 miles). You must do all of this in 17 hours or less to earn the coveted title of an "Ironman".
Some of you are wondering WHY ON EARTH anyone would be insane enough to subject their body to that kind of torture. To us, we wouldn't have it any other way. We love it, and we live to swim, bike and run.
I found it almost comical that I was struck by the freight train of a disease called, "Crohn's" right about the time I was supposed to be increasing my training volume for my first Ironman competition. Most of you who know me, aren't' surprised. If something bad is going to happen, it happens to me. Like if someone is going to get run over by a trailer, it will happen to ME. And yes, that has happened. I was run over by a trailer in 2005. I will share that story at a later date.
So, 2010 began with a bang. I spent December of 2009 being sicker than ever before in my life. I felt like I had the flu, along with severe back and abdominal pain. I became a patient (and not the nurse like I was used to being). I became a member of the"Chronic Disease for Life" club.
Treatment of Crohn's involves taking medication to suppress one's immune system. The goal is to keep the body from attacking itself, or keeping the inflammatory response down, to avoid further damage from the disease. I now take a low dose of oral chemotherapy, and will for the remainder of my life. The side effects are wonderful. :) I now have hair much thinner than ever before, and with a mind of it's own. Little adjustments to the medications can cause major nausea, fatigue, and headaches for me. However, the most recent increase in medication (two weeks ago) has left me feeling better than I have in the last ten years. I cannot complain, and am grateful.
In any event, despite the diagnosis of Crohn's and despite starting 2010 with taking 24 (yes, 24) pills a day, I continued to train for my Ironman. I would be an "IronCrohnie", that's all.
At that time during my life, I decided NOW more than ever, was the time I needed to be physically and mentally strong/fit. There was no better way (in my warped mind) to do so, than continue down the path that I had already started. I had a commitment to fulfill, and I was going to do it....against all odds! One thing about me is that I do love to prove people wrong. Tell me I can't do something because of my ailments, and I will do them ten times. I will NOT let this disease define me.
I will close for now because it is getting late. My plan is to post a little here and there to share my experiences as an athlete with a chronic illness. I believe that nothing can stop us from achieving our goals and our dreams.
So whatever it is you are "thinking" about doing....what are you waiting for???
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