Sunday, December 11, 2011

2011

I was going to put writing off until the new year but just decided there is no reason to wait.

This year was complete insanity. We shot a film, my family grew by two (one husband (mine), one baby (not mine)), we battled cancer, we threw a huge wedding, I changed my name, we won awards, we planned for the future, we battled Crohn's.

All of these things were life-changing. No one thing completely changed me but each one altered my outlook on life. I feel the change. I feel like I am a very different person than I was on December 10, 2010. This year I feel more confident, I feel stronger, I feel hopeful, less restless. I know things now that I didn't know then.

I didn't think marriage would change a five-year, live-in relationship. I didn't think it would, but it has. I know my best friend will be right next to me, supporting me, for the rest of my life. I know my success is his success and my failures his failures (and vice versa). As much as I thought it wouldn't change, it has. Marriage is far more profound to me now that I have taken part. It does feel different. The change has come. We are married.

This year, I witnessed a new life come into this world. I was there through twelve hours of labor and literally held my sister as she gave birth. There was a lump in my sister's stomach and then, suddenly, another person in the room. A new life that we are all responsible for. We must do what we can to make sure she has what she needs to live a good life. My sister will take care of the baby's basic needs but the rest of us will surround her with love and teach her the things my sister can't teach her. We are in charge of spoiling her and letting her know we're on her side but her mom is right. I never realized I had the capacity to have so much love for someone I never met, but everything changed the second that baby was born. I have changed. I look forward to having my own someday soon.

I'm looking forward to another year of ups and downs (hopefully more ups than downs), another year of adventures with my best friend, another year of laughing until it hurts with my family.

Dear Crohnies, I know some years are harder than others. I know how difficult it is to get through the daily rigors of life when you are so sick for long periods of time. My wish for everyone for 2012 is for you to find what you love to do and do it. Whether it's a hobby or career or whatever, do it. We're all going to die.

The biggest lesson that was reconfirmed to me this year is that, no matter what happens, life is what you make it.

Wednesday, August 17, 2011

Advice?

Here we go again.

With all the travel and stress and burning the candle at both ends, it appears the Crohn's is coming back.

I've been having joint aches for about at least a month now. Then I went to the dentist who found gum inflammation out of the blue. Now my stomach is in on it. It's not bad yet but it's getting worse. The headaches are back, it's increasingly difficult to stumble out of bed in the morning and the fatigue is getting to me. I probably shouldn't complain too much,I've had a pretty good remission going for almost two years, but I probably will. I guess it's time to slow down.

I know I should call the doctor but I have a big decision to make. I really like my doctor. He is a good listener, he never rushes me out of his office or off the phone and he seems to care about my well being. That said, he's a little laid back for my personality, he's not a Crohn's specialist and I'm not sure how much experience he has with extra-intestinal symptoms.

Do I stick with my doctor? Do I find a Crohn's specialist? Do I try an integrative program which combines modern medicine with complementary alternative medicine? Does anyone have any experiences they would like to share regarding a doctor change or alternative medicine? We've got some big stuff coming up and I'm not prepared to have another two year bout with the Crohn's. Help!

Sunday, May 8, 2011

Update

I survived the developing-country-film-shoot but barely. I was great for a few days but the unfamiliar food, lack of sleep and stress got to me. I had to skip a few meals but I made it out alive. The experience was amazing and I'm so glad to have had the opportunity. I ended up doing everything but taking photos, but it is a week (and a half) that I will always remember fondly.

The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.

I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.

I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.