The fickle nature of chronic illness has a way of leaving me feeling paralyzed, stuck, and out of options. Many times, I can find a good work around to get myself out of the jumble of the day but alas, sometimes circumstances really suck and become more than I can (or want to) handle.
A few months ago, my endocrinologist wanted me to get a DXA scan; I had just had one a year prior and even though it had shown minimal bone loss, I thought it odd that she wanted another one so soon. I saw her last month to go over the results. In less than 15 minutes I was told I had osteoporosis in my spine, given a choice of two medications, and sent on my way.
I sat in my car and cried for a few minutes, and then I played the blame game. I blamed myself because of my crappy diet and non-existent exercise routine. I blamed myself for being cavalier with my calcium supplements. Then I got angry at Crohn’s for being a big jerk and just for good measure, I cursed my temperamental, menopausal ovaries.
Once home and alone with my scrambled thoughts, I went straight to the computer and enrolled in ‘Freak Out 101’ at Google University. I googled osteoporosis, I googled the medications, I googled until I had about a dozen tabs open!
Full disclosure: This isn’t my first rodeo with bone density issues. About 14 years ago, when I was new to Crohn’s and all its wonderment, my GI doctor was concerned about my prednisone use and mal-absorption issues related to the Crohn’s and ordered a DXA scan. I was skeptical but the scan confirmed osteopenia in my hips and osteoporosis in my spine.
He prescribed Actonel, a medication that most women don’t start taking until they are in their sixties, I was 37. Actonel wreaked havoc on my upper GI tract and caused esophageal damage. Enter PPIs (protease pump inhibitors), namely Prilosec. After two years my bone density improved and against medical advice, I stopped taking the Actonel. I could no longer tolerate the burning in my throat. I needed the PPIs for another six years. I was anxious to wean myself off of them because… they can interfere with calcium absorption and… drum roll please… may contribute to developing osteoporosis! That’s kind of fucked up.
Osteoporosis, my old friend, had returned and I had no clear picture of what my future might hold. My GI doctor and GYN doctor have deferred to my endocrinologist and the endocrinologist is pushing drugs (scary drugs.) She is treating the osteoporosis, not my whole being; I pondered, “This medication can’t be my only option”, I was stuck!
When I’m feeling this way, I like to recall a favorite lesson from my master’s program, “Life as a Rice Pot.” The rice pot is the symbol of movement; the creation of possibility, a synonym for life. Picture a covered rice pot sitting atop a flickering flame, contents simmering away. In time, the lid will start to jiggle and jump, steam will escape. Everything is moving in harmony as the once inedible rice is transformed into nourishment. Not enough heat and nothing happens, too much heat and the whole thing might blow!
So I sat quietly and thought, “I think I may have stopped paying attention to my rice pot and let it boil over. Now the flame is out and nothing is moving.” I didn’t know where to begin. Then it hit me, this is my life, my health, and my rice pot; I knew what I had to do. I re-lit the flame by making a phone call and asking for help.
My insurance company has an “Ask a Nurse” number, I called and as coherently as I could, I explained my situation. That I collect chronic illnesses like someone might collect sea shells and that my latest diagnosis and drug options had me at a loss. I discovered they have a case management program AND that I would qualify. That call led to another call and I now have a nurse case manager that is helping me manage my care. She connected me to a pharmacist so I could ask about other drug options. I have spoken with a social worker that has helped me find a therapist (Houston, we have simmering!) I also started physical therapy and have been learning safe and smart exercises for balance and core strength.
While this flurry of activity has been time consuming and tiring, it has also been empowering and a big boost to my confidence. The phone calls, appointments, and exercise have forced me to put myself and my body front and center, back into my awareness. It’s a lot of work, tending this rice pot; I am doing it and I am worth it!