Guilty Pleasure

I am a rule follower. I have not taken, sniffed, snorted, or smoked any illegal or dangerous substances. Ever. I have never even smoked a cigarette. I DID hold a lit cigarette once, but I didn’t inhale. I didn’t even hold it to my lips. I do drink alcoholic beverages, but not everyday, nor to the point of being all out drunk. The few times I have, I have hated it. I don’t like feeling that loss of control.  I could never be an addict.  I do, however, have one guilty pleasure.  I LOVE getting anesthesia.

In the last few years I have had a few surgeries and procedures that required sedation. While this makes many, maybe even MOST people apprehensive, it makes me giddy. I love the feeling of the medication when it starts running through my  blood. The seconds before I am out like a light. When I go from all the medical personnel and commotion in the room to waking up in  recovery. It’s like Christmas morning for a kid, and then the disappointment that it is over.

I have known about this strange attraction of mine for many years, but have not needed to have any procedures requiring it again until recently. I hope I don’t have any more soon because I’d rather have unquestionable health, but if I do there will be no fear from me.  Bring it on, but only if it’s legal. I am a rule follower, but with a very strange guilty pleasure.

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.

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.