Tuesday, June 27, 2017

The Forest for the Trees: is there such a thing as too much support?

I’ve always had a certain affinity for getting in my own way. While I love, love, love attention to detail (and who doesn’t!), it is easy for me to get lost with the devil and miss the bigger picture. Recently, I’ve come to realize that for the past two months I’ve been so caught up in the particulars of managing my chronically ill life that I was putting the actual living of my life on hold.

Since my diagnosis of Osteoporosis, I’ve gone to physical therapy twice a week, have been seeing my therapist once a week, checking in with my nurse manager, and logging all my meals for the dietitian I’m working with. I also found myself getting re-involved in all kinds of on-line support groups and pages for Crohn’s, NF, osteoporosis, and chronic illness. As a professional patient, I had been clocking some serious unpaid overtime; all in a colossal effort to get well.

And then there's life: The A/C stopped working, and we had a fire in our basement (stories for another time.) An organization I volunteer with alerted me that I needed to set goals for the coming year and gave me two days to do it. And least I forget, I have my normal activities of daily living to contend with; shopping, cooking, cleaning, etc.; sometimes I bathe.

Last week, I told my therapist that I felt like I was becoming increasingly irritated. I told her, “I have too much stuff, too many appointments, and I keep adding more stuff; I’m in the weeds!”

She reminded me of my power of choice and that my appointments are for my benefit, nothing about the therapy process should hurt or cause me angst. It is acceptable (and encouraged) to schedule my appointments so as to suit me. She also reminded me of the word “no.” What a great word! It’s one of the first words we learn to say and learn to hate to hear.

So I began the process of questioning where I was spending my health managing energies and ascertained that I may have been afraid of doing something wrong or missing out on any little bit of information that could aid me in my quest for wellness. As I looked deeper, I found places to make cuts without sacrificing my care.

Physical Therapy is done; I know the exercises and feel confident I can do them at home. Instead of seeing my therapist once a week, it’s now every other. I also spent some time on the computer leaving groups, unfollowing pages, and unsubscribing from newsletters. I weighed the pros and cons of volunteering and came to the painful decision that I just don’t have it in me to be committed at the level required so I wrote a letter of resignation (or as I called it, a letter of liberation because it actually felt freeing to write it.)

This past week was my first whole week with no appointments. I spent the extra time in my yard, digging, planting, moving rocks, and cutting back unruly vegetation. I was able to see the progress I made and it felt rather good.

One of my yard projects

By taking a step back and pausing to examine my life I had discovered that when you get past the trees, the forest is a sight to behold!
Forest, trees, or both? What do you see?

Monday, June 5, 2017

Life as a Rice Pot

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!