Saturday, September 3, 2011

The Patient Patient

It's honestly a bit difficult to post this- mostly because I don't want people to see me as less than able to do my job, or to think I'm fishing for sympathy. I decided to post anyway, because this is who I am, take me or leave me. And as one friend pointed out, my story is inspiring in some ways. I have taken the lemons life gave me, and not just made lemonade, but lemon sorbet, lemon chiffon pie & lemon poppy seed muffins too!

I am not your normal thirty-one year old. I take 5 prescription medications, 23 different supplements and spend my first & last 20 minutes of the day doing physical therapy exercises. I walk 2-3 miles almost every single day. I eat a diet with literally no preservatives, additives, dyes or artificial sweeteners in it, plus follow a mostly vegan plan. I work 2 part-time jobs, plus run a business, not because I'm a workaholic, but because we have major medical bills.

I am an IC patient. 

Interstitial Cystitis (IC, also known as Painful Bladder Syndrome/PBS) is listed as a rare disease, but there is a possibility that upwards of 6-12 million people in the USA alone suffer from symptoms. Currently it takes an average of 7 years to obtain an accurate diagnosis. (That is down from the 20 years it was in 2007!) It took me a year to be diagnosed, and I had to see 4 different doctors to finally find out what was wrong! I am a very blessed patient, as even though it took so long, it was incredibly short for averages! And I'm also very responsive to the medication I was finally given.

IC is a bladder pain condition that is almost like having a bladder infection- but it never goes away. It can be extremely painful. Severe cases rate their pain up there with what end stage cancer patients go through. Except, there is no tried & true treatment for every case, and there most certainly is no cure.

For basic patients diet changes can be enough to pursue a normal(ish) course of life. Diet changes helped me some, but not enough. I was still going to the bathroom every 20-30 minutes on a "normal" day, and getting up 7-15 times a night. No sleep, plus pain, and you have a very grouchy Naomi on your hands. Samuel was a blessing through this all because he believed me, and he cared for me. He went to every doctor's appointment & held me through the pain. He still does!

I was finally prescribed Elmiron, the only medication approved by the FDA for treatment of IC. It only helps 1 out of 4 patients. Luckily, I was that one! However, it costs between $100-400 a month! So maybe I wasn't so lucky... this is why our medical bills pile up. Between diagnosis, prescriptions, supplements (which aren't covered by insurance, but often effective) and finally physical therapy, we've racked up quite a large sum to pay off.

My day-to-day life isn't very painful anymore (mostly because pain is now a way of life), but one of the worst parts of IC is that you can do everything "right" and still the condition will flare up & remind you that you aren't invincible. My Urologist knows I'm a photographer, and she has helped me craft a medication plan that I can use in times of extreme pain, to continue to do what I love. I've never had a "sick day" while being a photographer, and I hope I never do. Photography gives me a reason to keep on keeping on... and when I'm behind the camera I forget about everything else.

I'm being so open because September is International Interstitial Cystitis Awareness month. If you suspect you might have IC, or know someone who does, here are some places to go for more information:

 I also welcome questions or even encouragement. You can find me on Facebook or even just by leaving a comment here. And if you live in Warsaw- you might see me about town. I'm the one with this ribbon on the back of my little red car:

Thanks for reading! And thanks for your continued encouragement & support! ~Naomi

No comments:

Post a Comment

I LOVE comments, so feel free to leave them! (Just be nice!)

Please note to pass the captcha you will need to enter both letters and numbers!