Dear Stoma…..

You saved my life. Thank you. Thank you for doing your job and for making living possible without a colon. I wasn’t the person I am today until you came into my life. You brought me from the edge of death to a world full of hope and joy. As in all relationships, there are a few things that you could work on though.

Sometimes when we are in public, you start spouting out loud obscenities. I’d appreciate it if you’d stop that. I know I can’t control when you decide to speak, but I don’t think it’s very convincing to others when I chuckle and say my stomach is rumbling, I must be hungry. Trying to cover your mouth to stop you is like dealing with a five-year old child who refuses to quit. It’s really quite horrifying.

Also, please don’t fail me at my most vulnerable moments. If my supplies are about to let me down, if the seal hiding my secret is about to break free, let it happen at home. I thought I was done with those embarrassing and panic-filled moments of possible public humiliation when you came into my life. My prior relationship was full of them and I thought those times were long gone. I know you are not like the last one. The one I let go because of the havoc that toxic relationship caused in my life. You are a gift to me. Let’s keep the blips private.  It’s better for both of us.

Okay. I know this is a weird request, but here goes. I prefer if you don’t need a change of “clothes” for six days. It saves on “laundry time” and money, because your “clothing” isn’t cheap. Not to mention the antics you sometimes pull during changes. Going for DISTANCE, doesn’t make you cool. It makes you annoying. Just keep it mellow and act like an adult. Keep your  moutn shut for five minutes. it’s really not that much to ask. I’ll always love you, but sometimes you really get on my nerves.

That being said, you keep me on my toes.  You always smell like the last thing I ate. Sometimes this is good, and sometimes this is bad. On the bad days, you can drive the most tolerant of people out of a room. In a hurry. This creates the problem of trying to exit the room without being seen and identified as the offender. Occasionally, you smell like nothing I have ever eaten.  More than once  you have smelled like a Christmas tree, and I wonder where you’ve been without me. You can make the biggest, and most unique bubbles I have ever seen, and I am always in awe, but who do I  tell that to?!

Despite your flaws, I love you. You have changed my life for the better, and I will never forget that. I will always be grateful for what you have given me.   For the second chance you have provided, for the freedom you have allowed me, and for the joy I have felt since you came into my life.

Yours Forever,

Livy

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.

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.