Making Sense of Insanity: Year 13

First, I have been absent from here far longer than I anticipated...

Had a scary few days not long ago when western winds whipped up. A third wildfire this summer took hold some 20 miles due north. It tore across acres of land leading to multiple sudden evacuation orders in a densely populated area. It was unknown how fast and far this latest manic wildfire would travel -- just about the time our region's power went out. Needless to say our go-bags were packed. It was an unnerving night. When the power came back six hours later we learned the winds shifted the flames away. We were out of immediate danger but our neighbors to the north weren't so fortunate. This latest disaster seems to have awakened some reconsideration about unchecked development in wildfire prone areas, but it remains to be seen if any policies will change.

The Mad Dash

Now, the back half of each year since 2013 signifies a particularly maddening dash into the unknown. This is when the U.S. health insurance industry publishes its price projections for the coming year. Each year the prices climb and there's complexity about which medications and specialists are covered by which plans.

Come September, I quite literally spend hours a week digging into what gets priority before my current insurance times out at end of year: 

• my bones? (years of steroid medications to treat my breathing degraded and weakened my bone density) 
• my lungs? 
• my sinuses? 
• my now stable but unpredictable autoimmune condition? 
• my eyes -- since my daily HCQ medication over time slowly degrades my retinas?
• any other new mysterious symptoms that indicate my sarcoidosis is migrating? 
• where am I on vaccinations? Shingles, RSV and Measles (check) COVID & flu boosters (need!)
• what's my inventory of rescue medications and daily maintenance meds?

In the U.S. much of this requires layers of pre-approvals, long wait times, and added costs And each year requires arcane research into which medications got recategorized as in or out of insurance formularies (e.g. removed from coverage). 

Less and less coverage costing more each year

People who are independently employed or who are approaching their mid-60s have to buy their insurance on the open market, and have zero bargaining power. The health insurance plans are administered by each state which means the plans are restricted to a smaller and smaller geographic area and provide zero coverage if you get sick or hurt while traveling outside the state.

By October, thing accelerate into a frenzy as I dig into the fine print to find out whether a hospital or doctor practice is no longer in contract and in network. In 2023 I had to say goodbye to my trusted allergist since he told me that his back office could no longer manage the paperwork nightmare from competing health insurance plans. 

In 2027, I'm looking at $3,000 to $7,000 a month (in after-tax dollars) for healthcare insurance premiums and to manage my current chronic conditions with specialists and medications -- or risk getting sicker by foregoing medications and monitoring.

Is it any wonder I'm giving huge mindshare to leaving the country (more on that as my early research plods on).

The here and now: do what I can

Last week I had an out-patient procedure, a long-awaited IV infusion of a medication called Reclast. It  attaches to the minerals in my aging bones to slow down the cells that break them down. This gives my bone-building cells a chance to catch up a bit. Without strong bones, my osteoporosis puts me at high risk of a spinal, hip or other major limb fracture. It came with its own weird list of side effects: waves of nausea over several days; a need to hydrate with some 60 ounces/day of water; fatigue and all around yuckiness.

Yesterday I awoke at 5am, tired but happy to see outside through the window a brilliant constellation of stars. I pulled up a chair, wrapped myself in a blanket and stared out at the beautiful twinkling scene. I later learned I was gazing on Queen Cassiopeia and the Lyra with the bright Vega star. It was a moment of calm in my otherwise frenetic mind. 

September Focus on Childlessness 

I mentioned in last month's post that I faced a mind-bending assignment. It was 100% self-inflicted frustration. After no less than a dozen drafts and hours of word jujitsu and staring at a blinking cursor, last Thursday I made one the first of two deadlines and submitted a 2,000 word entry on Childlessness. 

I completed it while contemplating the deaths of two childless icons: well-known humanitarian, song-writer and musician Dolly Parton and the one and only Gloria Steinem. Both made a huge impression on me. Gloria shaped my coming of age years and provided a power symbol of what one woman's dedication to change looks like, whereas Dolly Parton emerged in my life at time of great sorrow when I was struggling to come to terms with my infertility diagnosis and failed IVF cycles. Each of these women, with their dignity, grace, and open hearts reminded me that I didn't have to be mother in order to leave a lasting legacy. With their luminary presence I committed to focus a significant amount of my time and my work to continue to speak up and out for the equally worthy and important roles that childless women play in the world.  

It occurred to me, as the deadline loomed larger, that perhaps the reason I found this assignment so onerous and distasteful boiled down to more than a little resentment at having to explain (justify) that the topic merited attention in the first place. The childlessness entry, in what will be a significant international encyclopedia on reproductive justice, simply did not exist before I made an 11th hour pitch to the editors in June. The book's outline was very 'mother/parent' and fertility centric (adoption, birthing people, breastfeeding, cesarean section, egg donation, IVF, midwifery, motherhood, parenthood, perinatal care, postpartum, pregnancy, pregnant people, pregnancy justice, queer reproduction, surrogacy, young parents).

And where does that leave all who can't or choose not to procreate? For example, in trying to encompass all those who do not reproduce, I had to sacrifice diving more deeply into systemic pressures that compel women to conform and more. With only 2,000 words I could only provide a tip of the iceberg overview. Now I await editorial response. Will they accept my offering or demand substantive changes before Oct. 31. 

Meanwhile, I will celebrate the work of Mali and participate in some of the World Childless Week activities just about to open before us.  

Wishing us all peace and strength.