Archive for June, 2012
Affordable Care Act and Crohn’s
For the past week, the Supreme Court case testing the constitutionality of the Affordable Care Act (a.k.a. Health Care Reform or Obamacare) has filled the news cycle, leaving people wondering if the entire law would end up being repealed.
Today, the decision came out and the SCOTUS is upholding the law, with the exception of the Medicaid expansion provision. This is great news for Crohnies because if the law was struck down entirely, options for health insurance would revert back to the limited ones available previously.
With this huge news, its important to discuss, specifically, what the law does for Crohn’s patients and their families.
Routine Eating
When you live with someone with Crohn’s, there are things far and few between that are more important than having a routine. I’m not talking about a full daily routine for when you wake up, go to the bathroom, etc. but instead a routine schedule of when you eat.
I personally don’t need to eat at a specific time or specific number of times a day (yes I do know that isn’t the healthiest if I am not eating three times a day but I’m not the one with a stomach disease :-)). However, Dan needs to stay with a strict routine, especially during the school year. When he is working, he can’t eat after 6:30 p.m. because it might make him have to leave his class unattended the next morning to use the bathroom. He also can’t eat in the morning for fear of having the same thing happen.
Learning to live with vomit (somewhat)
Living with someone with Crohn’s Disease for the past three years and dating for almost six has caused me to grow up pretty quickly. I mean, for those who know me, I’ve always been a 50 year old in a 25 year old’s body to some degree. I am an extremely anxious person with some pretty bizarre minor phobias (flying, drinking, boats, etc.) that all stem from one major phobia-VOMIT.
I have never thrown up (or at least that’s what my parents have claimed all my life- I have some vivid childhood memories that contradict that belief). And, as many people know, those with anxiety don’t like not to know what something will be like. So I guess, in a bigger sense, my phobia is a fear of the unknown that has manifested itself in a fear of vomiting. For the longest time, I couldn’t even say the word vomit. I had a therapist in high school who tried doing exposure therapy for me and as one of my first “assignments,” I had to sing the song BINGO but replace BINGO with VOMIT. Talk about bizarre (and surprisingly helpful).
Talking about shit
I have tried blogging more than once in my life and it usually ends up the same way- I get really into it for the first few days and then get bored and give up. But I really want to give this a go and make it work this time around.
For the past almost six years, I have been a caretaker for someone with Crohn’s Disease. In 2007, a couple of weeks after we started dating and after my mom started chemotherapy for non-Hodgkin’s Lymphoma, Dan (my now husband) was diagnosed with Crohn’s Disease. Crohn’s, for those who don’t know, is an inflammatory bowel disease. Basically, it means that your gastrointestinal tract is inflamed and you have horrible cramping, diarrhea, weight loss, and all sorts of other fun things.
At age 20 (when we first met), most people would run from having a life with someone with such a serious, debilitating disease. Your early 20’s is stereotypically about being fun and care-free. But, as my friends would say, I am not most people as I have my own issues that are on par with Crohn’s for Dan to deal with. I have been with Dan through four colonoscopies (I can tell by the number of stuffed animals he has from me, one for each one), three hospitalizations, and one surgery, not to count hundreds of doctors visits and thousands of dollars in medical bills.
Caring for Crohn's & UC 