Crohnically Dreaming

Since age 12, I have wanted to be a Marine Biologist. I wanted to work with marine mammals while living on a boat and eating Crepes Suzette with Philippe Cousteau. In high school my science club spent two spring breaks in Key LargoFL, with the Marine Resource Development Foundation (MRDF). We studied mariculture, ecology, biology and astronomy. The first year we snorkeled the mangrove forests, turtle grass shoals, gorgeous coral reefs and way out in the deep blue sea. Year two, we were SCUBA certified and able to experience those areas in a more in-depth manner. I was in heaven. This was what I wanted to do forever. The one thing I missed was a manatee. I wanted to work with the manatees.

Since Ohio is a land-locked state, I studied Biology with the hopes of going to grad school in Guam. Then I got sick. I realized that with Crohn’s I would not be able to live out on a boat, away from quality medical access and ready access to bathrooms. I switched my major to secondary education and decided I would share my love of Biology with
high school students. Then I fell in love with the Hebrew language and Archaeology and switched my major again. Eventually I was too sick for school and I had to drop out with 4 quarters left. Life sucked. I thought I would just have to deal with the fact that my dreams and my life were no longer compatible.

10 years later… I went to visit my friend Kara in Florida. I decided that I wanted to go somewhere for my 29^th birthday. I saved up my money and left for St. Pete the day after my birthday. Kara and I have been friends since 6^th grade. She was also in the science club and we were dive buddies for both years. Kara was able to stay on her dream track and now works as an Oceanographer. She had planned a wonderful vacation for us; we went kayaking with alligators, hiking in treetops of a national park and –Dun Dun Dunnnnnnn– snorkeling with manatees in Crystal River! Best birthday trip EVER! The manatees were everything I had expected and so much more. They love to play and be scratched and tickled and one little guy had a crush on me. He kissed me at least five times. I was finally able to swim with the manatees and I was so happy. That was five years ago and I still grin every time I think about it.

This summer my dreams have been reinstated. I volunteer for St. Jude Children’s ResearchHospital’s-Columbus Office, and at their big dinner event each year at The Columbus Zoo. This was my third year at the event and I finally got to meet Jack Hanna! By the way, he is exactly the same in real life as he is on TV. I knew I only had a minute to speak to him, so I complimented him on the manatee exhibit. I told him that I had been to  Crystal River to swim with the manatees and that it was one of the most amazing experiences of my life. I gushed and gushed for about two minutes straight. Finally, when I came up for air, Jack told me that they need volunteers to help tend to the manatees and aquarium here. All I need to do is take a SCUBA re-certification class. I can’t even tell you how excited I am. I thought I would have to give up on my dreams because of my disabilities, instead, I just have modify accordingly for my abilities

I have several dreams that I gave up, but I’m revisiting them and will do my best to incorporate them into my life. I may not be able to live on a boat, but I can volunteer at the zoo. There is a bathroom next to the exhibit and I don’t need to worry about medical access. I may have Crohn’s for the rest of my life, but now I will have my dreams too. To both of them I say, “Bring it on!”

Reflections On Shark Week

It’s Shark Week! The one week a year where the cable universe is devoted to the most majestic of underwater predators, the shark. I am a marine biology freak. My dream job has always been, Marine Mammologist, and I love snorkeling and SCUBA diving. Shark week is always a big thrill for me. It’s also a week of reflection. When I think of sharks I think of grace, agility, power, strength and pain. Sharks make me think of pain dreams.

Since I live with Crohn’s, Ulcerative Colitis (UC) and Chronic Functional Abdominal Pain (CFAP), pain is a part of my life every day. Chronic pain comes in many forms, mine include; cramping, burning, stabbing, searing, throbbing and pressure. I’ve learned to deal with most of it through medication, breathing and guided relaxation but there are times when I’ve had absolutely no power over my body. Pain medicine is not designed to take all of your pain away. It’s designed to take the edge off and restore some functionality. The best case scenario, in most cases, is a 50% pain reduction but that can take years and pain is never static. Breathing and relaxation are great to help when you are conscious, but what happens when you are asleep or if the pain knocks you out? I’ll tell you…pain dreams. When I am flaring I get nightmares so intense I actually feel like my body is being attacked. Sometimes I dream of lions but mostly it’s a great white shark literally tearing me to pieces. My pain gets so intense that my brain equates it with an external attack. I dream I’m getting eaten by an apex predator with a giant toothy grin. When this happens I can’t wake up, I start screaming and fighting for my life. Woe to anyone who tries to wake me up because I am apt to punch or kick them and I don’t even know they are there. I just keep trying to get away from the pain.

These horrible dreams were very common when I was first diagnosed, occurring anywhere from a couple a night to several a week. That was a truly frightening time for me, I couldn’t control my body and I was hurting the people I loved. I was most worried about my dad. He was onTPN(nutrition and medicine pumped through an IV) with his IV catheter attached to his heart. If he tried to help me while I was flailing I could have killed him. I was afraid to go to sleep and terrified of what I was going to wake up to. These dreams kept up for about 3 years, through sleeping pills, anticonvulsants, antidepressants, painful muscle blocks and sleep studies.

I finally found a doctor who listened to me; he changed my pain medicine and recommended a pain therapist. Finally, my dreams started to recede as I started a new regimen of opioids and relaxation therapy. I’ve been having a bad flare since January and I’ve only had one pain dream. I think my body has been trained to breathe and relax even when I’m unconscious. My pain keeps growing, but my body’s responses are better and I’m exploring better pain management, including a pain pump. The pump will deliver medicine through my opioid receptors and I won’t be held hostage to my faulty GI tract for pain relief anymore.

As I watch Shark Week this year, I can reflect on how far I’ve come. I enjoy the shows for what they are and celebrate an amazing, misunderstood animal that should be respected. As I watch, I think of my body the same way. Maybe with training, awareness and research we can win the battles against our bodies and save the sharks!