Second Chances

Part II……  Repost in honor of Crohn’s and Colitis Awareness week. Share the  post, raise awareness.

The first thoughts that crossed my mind, while I was recovering in the hospital, were very basic. How do I dress now? Can I wear the same clothes, or will I have to wear overalls, or baggy dresses, for the rest of my life? Will the bag show if I wear jeans? Will I ever wear a bathing suit again? Will people know by looking at me? Am I going to have a perpetual bump on my front, right side? How do I take care of this new “appliance?” All of these things were a little scary for a 33 year old woman. It felt like these were things I shouldn’t have to worry about at my age; like I was robbed of some of my younger years.

Once I returned home, however, I discovered all the positive results of the surgery. I required no more medication to control my disease. It was finally in remission. I didn’t have to know the  location of each public restroom before entering a store or restaurant. The innumerable foods that I hadn’t been able to eat for four years were ecstatically served to me by my mother who was such a blessing and a help during those years.  I could easily hide the Ostomy bag. I didn’t have to dress differently, and if I didn’t choose to tell someone, they had no idea that I was any different then them. Finally, my kids. I could be there for my kids. I could help at school, take them to the park,  and play with them, without having to do it while lying on the couch.

Over time, I realized how strong this experience had made me. If someone had asked me if I could go back in time and change things; if I had never had Crohn’s at all, would I do it?  The answer was “NO!” Crohn’s made me who I am today. If not for this disease, I would not love life, the little things and big, in the way that I do now. I would not notice God’s beauty in so many everyday ways, and appreciate them on a daily basis. I would not have stepped out of my box to do things that I was not comfortable with, but I did……..things I never thought I would be able to do.

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The Unexpected

In honor of Crohn’s and Colitis Awareness week, I am reposting some of my Crohn’s related entries from earlier this year, for those of you who may have missed them. Feel free to share, and spread awareness, near and far!

When our first child was about two years old, I realized that my health had been slowly deteriorating. I was often out of breathe, with little action to cause it, tired, and I was having digestive issues. I made an appointment to see my doctor, not really expecting anything serious. I had no idea that this would be a pivotal point in my life moving forward.

In May of 1998, I was diagnosed with Crohn’s Disease. This can affect any part of the digestive tract, and although it can go into remission, it is a lifetime disease. My Crohn’s was basically limited to my large intestine. It became inflamed like a tire, both inside and out. It required medications to reduce the swelling, iron for anemia, due to the bleeding it caused, and a restricted diet. The diagnosis was very upsetting at first, but I soon felt that it was manageable, and went back to life as it was, with a few more pills and a few less tasty foods to eat. I was months away from getting pregnant with our second son.

The following summer, after our son was born, I started having increased symptoms from the Crohn’s. These things creep up on you. You feel like you have it under control. Change the diet a little more, change the medication. Tell yourself that things will get better. Only they don’t.

On January 2, 2000, while most of the world was taking a sigh of relief that their world didn’t fall apart as many predicted, mine did, as did my husband’s. Or at least it began to. I went to the doctor after feeling like I had been suffering from a flu bug for a week or so, and ended up hospitalized for 2 weeks. It would be the first of a number of stays. After the pregnancy, running around with two young children, the stress of two relatives passing away around Christmas, and my denial of the symptoms, I was so dehydrated, and my blood pressure was so low, they didn’t know how I was even standing up.

In the year to come, I would have 105 degree fevers, tachycardia (racing heart), extreme weakness, handfuls of pills, a severely restricted diet, and I would go down to 88 pounds. The boys were now 4 years and 6 months. My husband had to travel quite a bit for work, and my mom would come help me. When she couldn’t be there, you would find me feeding the baby while I was wrapped in a blanket due to chills. I lived hour to hour.  Morning nap, afternoon nap, bedtime. Those were my goals to make it throughout the day.

In the summer of 2000, I was once again hospitalized. This time for a staph infection I developed after hitting my leg on the car. For most, this would be a two day stay. For me, it was seven, including my birthday. My immune system was just too compromised from the Crohn’s.

There would be no relief for two more years. In 2001, I developed cataracts from the steroids I had to take for the inflammation, and at the age of 32, I would need cataract surgery. In April 2002, I lost vision in my eyes due to swelling of the optic nerve. This would require a hospitalization as well. Though I did eventually regain most of my sight, I still have blind spots, and have to be checked every few years.

Finally, in the summer of 2002, when all medications had been tried and none were working, I  realized that I had to take more drastic measures. I could not be there for my boys as I wanted to be. I couldn’t help at the school, or take them to the park. This disease was taking me away from my kids. I couldn’t live with that. I chose surgery. My large intestine was completely removed. When they removed it, my heart rate immediately went back to normal, and I mean at that very moment in surgery. They said it was almost perforated in so many areas that if I hadn’t been on a strong antibiotic for so long, I would have had a massive blood infection. I had no idea how close I was to dying.

I will live with an Ostomy bag, for the rest of my life. It was one of the best decisions I ever made. I have never regretted it. Not for a single second.

 

 

 

 

 

 

 

 

 

 

What I learned from my Crohn’s Disease

As I have said before, I have Crohn’s Disease. It has been in remission for 12 years, but from a year after my diagnosis in 1998 to August 2002, it was like a wildfire reeking havoc on my body.

I spent three years, from the summer of 1999 after Brennan was born, until my major surgery in 2002, fighting for my life. I didn’t realize it at the time. It snuck up on me in little increments, and before I knew it it had overtaken my body. Specifically, my large intestine. I was on a severely restricted diet, and took handfuls of medication and vitamins. I was constantly in doctor’s offices, or emergency rooms. I had raging fevers, higher than you would think a person could survive. Higher than the kind that send parents into panics. I had a racing heart, even at rest, lost partial vision in my eyes, and fought a staph infection in my leg for a week in the hospital. I never had the stomach pains that many people with Crohn’s do, but I probably spent more time in the bathroom than the average person will spend in their lives. My weight went down to 88 pounds.

In the end of December 1999, after spending the holidays (which are crazy busy during NORMAL circumstances) at my grandmother’s and Bill’s grandfather’s viewings and funerals, I got what appeared to be the flu. It went on for a week or so, and didn’t seem to be getting better. As lay down for a nap one day, I said a prayer. I asked God to give me a sign. To let me know if I should go to the doctor after the New Year, or if it would go away on its own. When I woke up, I had little insect bite-like bumps all over my body. I will never forget that moment. We are a quietly religious family. I have always been a believer, but this was a pivotal moment in my life, my belief, and love of God. I spent the next two weeks in the hospital.

I remember, sometime in the second or third year of my Crohn’s, being exhausted. Tired of the constant battle. Laying on the bed, getting ready for another nap. I, again, said a prayer. I asked if I would be feeling better the next day, and begged that I would. Within a minute or two, and I kid you not, the phone rang a strange double ring. It reminded me of the way my phone at work rang when I was getting an interoffice call. When I picked it up, it was an operator recording. “I’m sorry, your request cannot be processed at this time. Please hang up and try again later.” I ran downstairs and asked Bill, who was sitting on the couch, if he had heard the phone ring. He said yes, but didn’t notice the weird ring. Another moment I will never forget. I am still quietly religious, but much more so. I believe. No one could ever tell me otherwise.

I fought having the surgery to remove my colon for a long time. I was too young to have an Ostomy bag. I was only in my early 30’s. How could I deal with that for my entire life?! I finally gave in to myself, it was my choice. I wanted to be there for my boys, and I was just too ill to be the mom I wanted to be. When the surgeon went in for my pre-op colonoscopy, he couldn’t even complete it due to the swelling. I had put the procedure off, and if it had been done sooner I’m sure they would have told me how dire the circumstances were. I’m glad I made the decision myself prior to that. I’m glad that I did it for the love of my family. In the end, it would turn out to be so much more than that.

That surgery saved my life. Literally. It was that bad. I can now eat anything I want, I take no medication for Crohn’s, and am back to a more-than-healthy weight. And I am LIVING. Living a life I wouldn’t be, if not for said surgery. I am living a life I would not be, if not for Crohn’s Disease.

I have learned to appreciate the little things that so many take for granted. The blue sky, white clouds, green trees. The contrast between them, and the beauty of it. The breeze. The birds. The smell of fresh air.

I have learned not to take my family and friends for granted, and to catch myself when I think that I am. To take care of them, as they took care of me. To love them with everything I have. To look to them for strength when I need it, and to give strength and support to them when they do.

I have traveled farther out of my comfort zone than I ever thought I would. If not for Crohn’s we would not have traveled abroad, adopted our daughter, or lived in China. Before Crohn’s my life was ruled by fear of the unknown. After Crohn’s, by the spirit of adventure, and a love of life.

I have walked on the Great Wall of China, and stood before the first emperor’s Terracotta Warriors. I have trekked through the rainforest in Langkawi, Malaysia, and floated through the mangroves. I have basked in the hope of longevity from the waterfall of the Pure Water Temple in Kyoto, Japan, and walked the Nightingale floors of Nijo’s Castle. I have explored the streets of Ho Chi Minh City, and traveled through the Mekong Delta. I have walked the beautiful beaches of Vietnam. I have zip-lined through the trees in Thailand, and fed an elephant bananas. Right into that giant mouth. I have been to the Demilitarized Zone in South Korea, and I have stood in North Korea, in the MAC (Military Armistice Commission) building.

Through my Crohn’s Disease I learned how to live. How to love. How to learn. But I’m not done. I have so much more to see, so much more to experience, so much more to love, thanks to my Crohn’s Disease.

SEE: Strength, Endurance, Enlightenment

Years ago, when Ethan was very young. Bill said that he wanted to send him on an Outward Bound trip when he was older. Outward Bound is an amazing organization that was developed during World War II by Kurt Hahn. It was developed to help seaman to deal with the harsh conditions. To build character, confidence, and the ability to survive in those conditions. For many years now, it has helped both youth and adults all around the world to do things they never thought possible. In July 2010, at the age of 14, Ethan went on a two week trip to the Smokey Mountain National Forest near Ashville, North Carolina to backpack and mountain climb. Scary stuff for both child and parents. He returned a new kid. Almost a man.

In October 2012, Billy came up with a “GREAT” idea, at least in his mind. Brennan and I had been having a hard time making it through his tween years with a constant battle of wills, remember he is me in male form, and Bill thought an Outward Bound Parent/Child trip was just what we needed. I disagreed.

First of all, I am not a camper. I have always said that my idea of camping is going to a Howard Johnson. In other words, I don’t camp. Ever. At least I thought that was who I was. Secondly, how would I deal with my Ostomy? I didn’t want people to know about it, and I didn’t know how I would deal with hiding it with no bathroom facilities…….and in a canoe. The trip was a four-day camping, and canoeing trip through the Everglades. Hours and hours, miles and miles of canoeing, and camping on little islands at night. But with my recent experience-it-all attitude. I couldn’t say no.

The day after Christmas 2012, with a fever brewing and illness setting in, Brennan and I left on a plane headed to Fort Myers, Florida. Bill said that maybe we should cancel since I was getting sick, but I wouldn’t do it. We had already had to cancel a major family vacation that summer to deal with a mysterious stomach virus I had for a month. I wasn’t going to do that to him again, so off we went. That night in the hotel my fever seemed to spike. I don’t know how high, but I had chills and asked Brennan to cover me with a second giant, down comforter, then popped a few NyQuil. I was going. Period.

The next morning I woke up feeling a little better, but not…”Hey! Let’s go paddle a canoe 10 or 15 nautical miles and be on, possibly, alligator-infested dark water until 10pm tonight”……kind of better, but that was what this was all about, right? Doing something you didn’t think you could. If I got too sick, they had people that could come get me. I never did tell them how sick I had been. I just asked if it was okay if I had cold medicine with me, as our paperwork said they had to know what everyone had medication-wise. This rule was generally for the kids on trips, as the counselors doled out medication when parents weren’t included.

After our half-day of getting to know one another, team-building, and loading boats, we were on our way. Sunset would hit about an hour after we left, and I asked for aspirin, saying I had a headache, but knew my fever was starting again. Luckily, that was the last time I would have a fever. The remainder of the trip was just cold symptoms and bodyaches.

That first night, because of our late start, we paddled through the dark Everglades until 10pm. They had started the trip by mixing up the groups, and I was in a canoe with a 13 year old girl. A tired, young girl, who had to go potty. Together we were a sad team that first night. We were always at the back of the canoe pack, and crossing the big bay areas in the dark was scary! Maybe more for me than her, as I had someone else’s child with me! The area was full of Mullet fish, but everytime I heard a “plop” in the water, I feared being followed by an alligator. I was also worried that the rest of the group wouldn’t realize how far behind we were, and that we weren’t with them anymore. On the last large bay before the island we were to camp on that night, God and I had a little chat. He came through for me. Good guy that he is.

As dawn broke on that second day, I woke from my sleep under the tree I had hung my mosquito net from to birds chirping and flying overhead. I will never forget it. It was beautiful. It was the first moment that I thought…. “I got this.”

We had breakfast and cleaned the dishes, packed up our stuff, had a group meeting with charts and compasses and planned our route for the day, loaded the boats, and we were on our way again. On this day, the boats were filled with either two kids, or two adults. Another long day, and 15 to 20 nautical miles later, we arrived at a peninsula on a small island on the Gulf of Mexico. It was dark, but only about 7pm, and the winds were pretty rough. The canoes were slamming into the beach on the wrong side of the peninsula from where we had to camp. We had to get out of the canoes to pull them around the tip of the peninsula, over razor-sharp, crushed, oyster-shells-of-death. We were required to wear tennis shoes at all times, and now I knew why. Brennan was behind me with another young man, maneuvering their canoe around the beach. God and I had another chat. Luckily, we all came through unscathed and we spent the night sleeping on a beach on the Gulf of Mexico. We awoke to a beautiful sunrise.

The final day of heavy paddling was a test. We had to plan our route, use our compasses, and help each other to arrive at our destination without help from our counselors, who followed at a distance. It was a shorter day, and we were in the boat with our own child. The route ended at The Everglades National Park where we went ashore, ate dinner, and wrote notes to our child, or the child to the parent, to be mailed six month later. We discussed what we had learned about each other and how the experience had effected us. Following dinner, the children were to direct the adults on how to turn our five canoes, and the boards that were stored in the bottom of them, into a floating island to camp on. The adults were required to follow the children’s directions without comment. We paddled the “island” to just outside the park limits to camp for the night. Each of us had an area of about 2 ft wide by 7 ft. long to sleep and store our stuff on.

As as I said, I was still experiencing cold symptoms. I had run out of medication, and this would be the first night without it. As I fell asleep, I apparently started snoring. Loudly. Brennan elbowed me in the back. I stopped. Fell back to sleep. Another elbow in the back. Repeat. I wanted to sleep. I was exhausted. Finally, I fell asleep, apparently acceptably quiet, and so did everyone else.

It was COLD that night. Really cold. I was so glad that I had Bill to snuggle up behind. Until I realized…Bill wasn’t there.  That would be one of the guy counselors I was spooning with. Aaaaaaah! Turn towards Brennan…go back to sleep. Still cold…..so glad Bill is snuggling up to me…..”Wait a minute….! Now he is spooning with me!” Awkward! Apparently they had warned the kids that this might happen, due to the space limit, but forgot to tell the adults. In the morning, when we woke, I apologized for the unintentional spooning, and for what Brennan called my snoring. He said it sounded like I was “calling to the whales.”

After breakfast, we paddled back to the park on our floating “island.” We passed by individual canoes going out for the day. We looked like we were rolling in from the ocean, and got a kick out of the look on people’s faces. We cleaned the canoes, and all the equipment, then we met to talk about what we had learned and how we felt we had grown as individuals.

By the end of the trip, we were physically, mentally, and emotionally exhausted, but we had achieved great things, and seen some amazing sights. We had learned how to read compasses, and nautical charts. We learned how to navigate the hundreds of small islands in the Everglades, and use natural landmarks to identify where we were. We had made and cleaned up three meals and a few snacks a day, and packed and unpacked canoes more times than we wanted to count. We had worked as a team. Four adults, four kids, and two counselors. We had also seen beautiful wildlife, phenomenal sunsets and sunrises, a bright, big, full moon, and been visited by dolphins.

After returning to the hotel in preparation to fly home, I would summarize the trip on Facebook. Perfectly. “It was amazing and miserable, frustrating and enlightening, ugly and beautiful. I hated it and loved it. It was the most  precious time with my little man.”

No one can ever take that time away from us. No one will ever know how awesome it was. We will never be the same.

 

 

Second Chances

The first thoughts that crossed my mind, while I was recovering in the hospital, were very basic. How do I dress now? Can I wear the same clothes, or will I have to wear overalls, or baggy dresses, for the rest of my life? Will the bag show if I wear jeans? Will I ever wear a bathing suit again? Will people know by looking at me? Am I going to have a perpetual bump on my front, right side? How do I take care of this new “appliance?” All of these things were a little scary for a 33 year old woman. It felt like these were things I shouldn’t have to worry about at my age; like I was robbed of some of my younger years.

Once I returned home, however, I discovered all of the positive results of the surgery. I required no more medication to control my disease. It was finally in remission. I didn’t have to know the location of each public restroom before entering a store or restaurant. The innumerable foods that I hadn’t been able to eat for four years were ecstatically served to me by my mother who was such a blessing and a help during those years.  I could easily hide the Ostomy bag. I didn’t have to dress differently, and if I didn’t choose to tell someone, they had no idea that I was any different then them. Finally, my kids. I could be there for my kids. I could help at school, take them to the park,  and play with them, without having to do it while lying on the couch.

Over time, I realized how strong this experience had made me. If someone had asked me if I could go back in time and change things; if I had never had Crohn’s at all, would I do it?  The answer was “NO!” Crohn’s made me who I am today. If not for this disease, I would not love life, the little things and big, in the way that I do now. I would not notice God’s beauty in so many everyday ways, and appreciate them on a daily basis. I would not have stepped out of my box to do things that I was not comfortable with, but I did……..things I never thought I would be able to do.

The Unexpected

When our first child was about two years old, I realized that my health had been slowly deteriorating. I was often out of breathe, with little action to cause it, tired, and I was having digestive issues. I made an appointment to see my doctor, not really expecting anything serious. I had no idea that this would be a pivotal point in my life moving forward.

In May of 1998, I was diagnosed with Crohn’s Disease. This can affect any part of the digestive tract, and although it can go into remission, it is a lifetime disease. My Crohn’s was basically limited to my large intestine. It became inflamed like a tire, both inside and out. It required medications to reduce the swelling, iron for anemia, due to the bleeding it caused, and a restricted diet. The diagnosis was very upsetting at first, but I soon felt that it was manageable, and went back to life as it was, with a few more pills and a few less tasty foods to eat. I was months away from getting pregnant with our second son.

The following summer, after our son was born, I started having increased symptoms from the Crohn’s. These things creep up on you. You feel like you have it under control. Change the diet a little more, change up the medication. Tell yourself that things will get better. Only they don’t.

On January 2, 2000, while most of the world was taking a sigh of relief that their world didn’t fall apart as many predicted, mine did, as did my husband’s. Or at least it began to. I went to the doctor after feeling like I had been suffering from a flu bug for a week or so, and ended up hospitalized for 2 weeks. It would be the first of a number of stays. After the pregnancy, running around with two young children, the stress of two relatives passing away around Christmas, and my denial of the symptoms, I was so dehydrated, and my blood pressure was so low, they didn’t know how I was even standing up.

In the year to come, I would have 106 degree fevers, tachycardia (racing heart), extreme weakness, handfuls of pills, a severely restricted diet, and I would go down to 88 pounds. The boys were now 4 years and 6 months. My husband had to travel quite a bit for work, and my mom would come help me. When she couldn’t be there, you would find me feeding the baby while I was wrapped in a blanket due to chills. I lived hour to hour.  Morning nap, afternoon nap, bedtime. Those were my goals to make it to throughout the day.

In the summer of 2000, I was once again hospitalized. This time for a staph infection I developed after hitting my leg on the car. For most, this would be a two day stay. For me, it was seven, including my birthday. My immune system was just too compromised from the Crohn’s.

There would be no relief for two more years. In 2001, I developed cataracts from the steroids I had to take for the inflammation, and at the age of 32, I would require cataract surgery. In April 2002, I lost vision in my eyes due to swelling of the optic nerve. This would require a hospitalization as well. Though I did eventually regain most of my sight, I still have blind spots, and have to be checked every few years.

Finally, in the summer of 2002, when all medications had been tried and none were working, I  realized that I had to take more drastic measures. I could not be there for my boys as I wanted to be. I couldn’t help at the school, or take them to the park. This disease was taking me away from my kids. I couldn’t live with that. I chose surgery. My large intestine was completely removed. When they removed it, my heart rate immediately went back to normal, and I mean at that very moment in surgery. They said it was almost perforated in so many areas that if I hadn’t been on a strong antibiotic for so long, I would have had a massive blood infection. I had no idea how close I was to dying.

I will live with an Ostomy bag, for the rest of my life. It was one of the best decisions I ever made. I have never regretted it. Not for a single second.