Tuesday, December 27, 2011
Welcome, Winter Light!
As the light returns and the year turns, I wish us all a brighter, happier, healthier 2012. I hope we can embrace connections with all life on the planet.
Here in Florida for the past seven months my blessings abound. I’ve grown closer to Lisa and her world than I ever imagined. Lisa and Cheyenne unfold like high wire acrobats, full of the energy, vitality, and silliness. I’ve relished reconnecting with old friends around the world—visits, phone, email—as I treasure encounters with strangers.
I’ve learned to ask for help—to find my lovely acupuncturist Dr. Marlo waiting for my Jeep to roll up so she can carry my oxygen and bag in, to take the arm of the dental assistant carrying my bags out the door as I tell the receptionist that we’re going out dancing. Because I’ve been forced to slow down and see more, I’d like to believe I‘ve grown in compassion for those enduring far more suffering.
All my life I’ve craved solitude for reading and writing. Now that I have it in abundance I haven’t kept track of all the books I’ve read. When I hit a low point, Close to the Bone: Life-Threatening Illness and the Search for Meaning (or as a Soul Journey in a revised edition) by Jean Shinoda Bolen (Touchstone, 1996) helped me put my own descent into darkness in a symbolic context that consoled me.
I’d enjoyed Bolen’s Goddesses in Everywoman decades ago and was receptive to her mythic approach. She takes Persephone’s abduction into the underworld, the Descent of Inanna, and Psyche’s last tasks as metaphors for what we face living in the shadow of death. These stories light a path to spiritual and psychological growth. Lighten your load. Cut to the bone to find out what and who really matter now. Ask the big soul questions: Why am I here? What did I come to learn, heal, do? Who and what did I come to love?
Illness that leaves you scared and shaky, dependent on others, gasping for breath forces you to slow down and strip down. Inanna’s Descent into Hell resonates for me. The Queen of Heaven and Earth must divest from all her comforts and symbols of power and authority until she’s dead meat hanging on a hook. Only then she can be reborn. How does your soul expand through crises you didn’t choose?
Bolen offers advice for the assertive and curious to resist being obedient patients passively accepting that medical world can fix everything with drugs and surgical weapons. We must strip away people and anything that no longer rings true and create our own healing circles and strategies. I’m still searching.
Welcome, Winter Light and Darkness!
Sometimes I want to howl like the coyotes I remember in the night in Corrales. I miss Doris—seven months living apart. I miss my circle of memoir writers and tarot readers, all my NM friends, parties, political rallies. I miss ABQ theatre, any theatre, performing Mabel, writing play reviews. I miss casually cruising art festivals and galleries, buying jewelry from Native artists, discovering NM culture.
I miss Corrales, living in our beautiful casa, watching the mountains change color, enjoying our Southwest art everywhere. I miss my library and particular books that I had to give away in May. I miss travel just for fun. I miss taking walks, swimming, yoga, going and doing whatever I want whenever. I miss my energy, vitality, independence, autonomy. I miss my previous body and life.
Doris arrives here next week and stays with me 16 days, most of it to, from, and in Durham, NC, where we go for a full week of grueling tests 1/9-13/12. The following week Duke will tell me when they want to see me again or when we need to move to Durham. Duke wants me living in Durham two months before they anticipate doing the transplant surgery in order to get me as fit as possible.
After surgery I'll be in hospital for 2-3 weeks and then at least two months of rehab exercise. They advise planning to live in Durham 5-6 months. After that, we'll move on somewhere, but we don't know where. We'll have time to consider options in that post-transplant period. We must sell the house in NM before we move to Durham so that Doris is free to leave Corrales.
I hate to admit what a news junkie I’ve become this month. I thought I’d ordered the Sunday New York Times only, but the daily paper started appearing—my mistake—and I got hooked. I’ve become embroiled in the insanity of struggles and suffering around the world. Will the wise and good-hearted win over the greedy and cynical? Of course, we all have a bit of both in us. In January I switch to Sunday only.
Tuesday, December 13, 2011
My Medicare/Heath Insurance Tale
“Occupy United Health!” I proclaimed, fist raised for edification of fellow cardio-pulmonary patients waiting for blood pressure check at Winter Park Hospital exercise room. “Are they the worst?” asked a sharp-nosed woman in her sixties. My cell croaked its frog ring. “This is Susan from United Health.” Did I conjure her? She researched my problem all day—on her blackberry while driving, missing her turn, spilling her coffee, running late—but by 10 pm had no answers.
In July the Duke financial consultant outlined lung transplant costs--$600K plus for medical alone (not counting drugs or housing in Durham for 5-6 months). I’d have to find a way to cover the 20% ($120K) not covered by Medicare. I thought I had it. My 2012 Wisconsin guide showed it would fund lung transplants, as they hadn’t in 2011. In early October, someone in Madison assured me I’d be covered in 2012.
But on Thursday, 12/1, when I called my current secondary (WPS) just to be sure, they said No. Early Friday I called Madison to discover that my policy didn’t fall under “Retired Wisconsin employees for whom Medicare is primary” (seemed right) but under “Medicare Plus,” which funds bone marrow and kidney transplants but not lungs. No insurance on the menu would pay since I didn’t live in Wis.
Thus I began a frantic search of websites (Medicare, private insurance companies advertising Medicare replacement) and phoning everyone that anybody suggested, jockeying my landline and cell because invariably somebody would need to consult her supervisor who would have to call me back. Humana said flat out that nobody would insure me with a pre-existing condition. Hadn’t that been eliminated under the new health plan? Not until 2013.
A kind nurse at WPH suggested I register a fundraising campaign with National Foundation for Transplants. “Some people give spaghetti dinners,” she smiled. This is what health care in America has come to? We try to finance $120K out of pocket expenses with spaghetti dinners? I understood anew how Americans go bankrupt paying for health care.
Someone of the 6 or 8 I spoke with from a senior line in Orange County, Florida, suggested I ask my doctor. Nobody at my pulmonologist’s knew what insurance other lung transplant hopefuls used, only know what insurance they take for their procedures, not what Duke in NC would take.
As a last resort, I emailed my pulmonologist. Next day I was headed for help. Lisa was going to help me into a senior center with my oxygen tank on my rollator where someone would answer Medicare questions one-on-one at 12:30.
Instead we went to an insurance office five minutes from my apt where I bought Plan F with United Health (ahem!) through AARP. I could transfer from WPS (a Medicare Plus plan financed with an employee trust fund) to another Medicare Advantage Plan without cutting off one form of coverage and starting another and with no questions about pre-existing conditions. I had to FAX a letter to Wis asking to discontinue my policy in order to transfer to a United Health Plan. Premiums for this (Cadillac?) plan plus drug coverage will cost me only about $250 a month but will cover excess and catastrophic expenses beyond what Medicare pays after I have $10 or 15K out of pocket expenses.
Late Wed a woman called from Madison to say she’d just been given my FAX (The 11th Hour) and could do what I asked—discontinue Wis coverage. But did I know I’d lose $18K accumulated in an escrow fund from my unused sick leave? Why would I want to lose all that money changing from a plan already paid for to one where I’d be paying? If I lived in Wis I could get a PPO that would cover lung transplants in Wis. She didn’t get it. I don’t live in Wis, and no hospitals there do lung transplants on people over 60. Could I freeze my escrow funds in case I wanted to transfer back to a Wis plan? What if I move back to Wis? She seemed dubious, but sent a form for my request.
Victory? I’m one of the lucky ones. I can afford to pay for health insurance—even Plan F. I may pay $18K out of pocket in 2012 and may lose $18K in Wis—better than paying $120K. I’m assuming United Health will give me a policy with my pre-existing condition. I won’t know until I get a policy in the mail hopefully before the end of 2011. Why does it have to be so difficult? Why is the USA the only major country with no national health care?
Meanwhile, I completed the first phase of my cardio-pulmonary rehab and “graduated” to the next less closely monitored phase for which I pay $50/month. It’s increasingly arduous to push myself with more and more oxygen through weight-lifting warm-ups, 1.8 mph for 18 minutes on treadmill, 10 minutes on recumbent bike, quad weight training, and cool down. By the time I’m finished I’m wiped out.
Next entry will give my reflections on embracing the darkness of the solstice.
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