Monday, July 31, 2006

Thoughts on Epilepsy, Reading, Doughnut Holes, and Watermelon Pickles

A hard night for me, but more on that later. I cover so much territory in this blog that I have included subheads in bold type. Feel free to skip around as you like. Note bene: "Doughnut Holes" is a rant, and NOT about food. Everything else, I hope, reflects my typical good humor.


First, the news on Alix. The neurologist saw her last week and changed her diagnosis to "epilepsy due to diabetes." Since June 9, she has had the following diagnoses: Colloid cyst, epilepsy due to drug reaction, colloid cyst, epilepsy due to diabetes. The only thing we are sure of - thanks to the detailed images of an amazing contrast MRI - is that Alix does not have a colloid cyst. She intended to have another EEG this week, but last I heard planned to change doctors tonight so she can see another neurologist for a second opinion. (She originally enrolled at work in a big clinic-system medical practice and they will not let her go outside of their three neurologists for a second opinion.) I remain concerned for Alix's well-being, but cannot do more than sit on the sidelines and give her moral support. That feels inadequate to me.

On reading, I can now report successful completion of my quest to read four hundred (400) books in twenty years. I finished John Irving's memoir "My Movie Business" on Saturday and thus had two whole days to savor my feat. I suppose I could have read another book, but after reading seventeen (17) books in the last three months to achieve my goal, I am slightly read-out now. What I would like right now is a very juicy book that I can get lost in - a good single-book sci-fi thriller would be great.

You might wonder, if you do not know me well, how I happened to know that I met this high-water mark in reading on July 29, 2006. It happens that for Mother's Day in 1986, my (then young) children presented me with a lovely blank book. After several weeks of contemplation, I decided to create a book journal and record books as I read them. So I have for twenty years, sometimes faithfully and sometimes playing catch-up after a few delinquent months.

In May 2006, I realized that a BIG anniversary approached, so I undertook to get all the way to the impressively round number of 400. Which I did. In subsequent blogs, I may leaf through the book and offer a sample of my reviews and thoughts on books good and otherwise.

Doughnut holes is the topic that makes my evening so difficult and actually has me downcast. I speak of the infamous Medicare Prescription Plan D doughnut hole whereby the insured (me and millions of other wretches like me) has incurred $2,250 worth of drug costs year-to-date and is therefore not covered for any prescriptions until the total of drug costs exceeds $5,100 in a year. The bottom line: my next $2,850 worth of drugs will be totally out-of-pocket, something I cannot afford.

I had the good fortune to have drugs left over when the new plan started, so I did not have to use the Medicare plan until March of this year. Since March (4 months in case you are counting), my drugs have cost $2,250. There are 4 months left of this year, hence I am reasonably sure of $562 per month in drug expenses. EXCEPT, that I buy my drugs in three-month increments, so I am actually going to need $1,125 in August for drugs and another $1,125 in December. Sadly, I do not have this kind of money lying around - or even in the bank. (And PULLEASE do not roll your eyes about our lack of foresight. Hardly anyone has enough foresight to account for a chronic illness that knocks one out of the workforce in the heart of one's productive years. At least I paid for Long Term Disability insurance, which has saved us more than once. If YOU do not have it, I recommend you remedy the oversight promptly.)

Our family has endured two hard years of unemployment for the breadwinner. (Note to new readers, I am disabled due to Lupus, which keeps me from working and causes my high drug costs.) I feel so bad for Michael because his diligent job search has been practically fruitless. (I say practically because he does manage to earn a few short duration contract jobs here and there from his contacts.)

Michael blames himself; I blame age-ism. Maybe prospects will be better for our kids' generation because of the smaller available workforce, but right now, plenty of younger people want Michael's professional level job and will take less money than he has made due to his years of experience. Of course, they will not be as savvy and probably not as hardworking and dedicated, but what does that matter in the corporate world of bottom lines?

Ironically, after months of depressing results, when people finally stop clinging to the idea of "professional" white-collar work, they cannot find bad jobs either. First, there is that age thing. Second, there is that "over-qualification" thing. Third, I guess employers just do not think people will stay in a lesser paying job when (if?) a better opportunity finally comes along. I suppose that is correct in most cases. The bottom line is that men and women like Michael are screwed and their families are screwed with them.

Before his layoff, Michael not only provided well for us financially, he had insurance. Since I am essentially uninsurable by anyone except Medicare, that benefit alone made him put up with more bullshit in his prior place of employment than anyone should have to endure. Now he is 58 years-old (almost 59) and we will probably never have good insurance again. Is it any wonder I cannot afford for my drugs? I did manage to get all but three of them changed to generics in order to keep my costs as low as possible. It meant some sacrifices for me medically, going from newer, better drugs to older, less effective ones, but I did it everywhere I could.

What's left on my brand name list is Aricept, which is an Alzheimer drug that I take to fend off the brain fog that central nervous system Lupus complications cause; Lescol XL, which my doctor insists is the only drug that will work to lower my triglycerides; and Folbee, a prescription vitamin that I take because I have a blood clotting complication with the unpronounceable name of hypohomocysteinitis.

My Aricept prescription costs $496.37 for 3 months. My Lescol XL prescription's cost for 3 months is $304.47. My Folbee is a minor $59.26 for 3 months. I take 11 other generic prescription drugs each month. Guess what has to go? Be warned, this may be as good as my blog gets, folks, because when the Aricept is out of my system I have a hard time with higher brain function. (For example, I have trouble doing crossword puzzles.)My rant has ranted out. Sorry if I bored you. I tried not to sound pathetic, but if I did, so be it. It is very hard being me tonight.


Which brings me to watermelon pickles. We cut into a lovely, perfectly ripe, seedless watermelon after dinner tonight. It tasted spectacular. As I ate, I contemplated the pale stripes on the green rind and remembered that my mother used to make watermelon pickles in my childhood. Watermelon pickles taste exquisitely good and I have not eaten one in dozens and dozens of years.

I thought about making some watermelon pickles myself and went so far as to look them up on the internet. I found a nice blog about them that I linked at the top of my blog.I gave up the notion after reading a few recipes. I cannot picture myself doing the work involved knowing that my family probably will not eat them. However, I had a wonderful trip Down Memory Lane ...

Oh, yes, I also remembered a poetry book my dear friend Ann gave me in 1968 titled “Reflections on a Gift of Watermelon Pickle… and Other Modern Verse.” Rereading the title poem, by John Tobias, made me a little teary about my childhood (in the nostalgic sort of way). Here it is so you can get teary, too.

I will be cheerful again next time I write. Thank you for bearing with me.


Saturday, July 15, 2006

Summer Moments: The Redstripe Ribbon Snake that Got Away

Alix saw her neurosurgeon on Friday and got good news (that leaves her in limbo.) She does not, apparently, have a colloid cyst or tumor. The anomaly that showed up on her various brain scans and MRIs is a cluster of blood vessels that is not dangerous. Unfortunately, this leaves the reason for her collapse at work and continuing headache (since May) undetermined, which makes her very unhappy indeed. That said, I am very pleased that no one is planning an excursion into the interior of her grey matter.

Summer marches onward in a hot fog. Tori went to Girl Scout camp for a week and Michael and I took the opportunity to slip off to the Texas Hill Country for some R&R with our friends Janice and Marvin. They hosted us at their lovely home in Horseshoe Bay, TX. We had a delightful time. In addition to long hours of laughing conversations and rambles around Horseshoe Bay, Michael and I took photographic side trips through Blanco, Johnson City, Perdenales Falls State Park, and Wimberley. I haven't seen the photographs yet, so I don't know how successfdul those were, but the adventures were fun!

Back to our trip. Batteries, what an invention! I have these nifty binoculars that can take photographs. I had them strapped to my fannypack when we visited Pernales Falls State Park. Climbing around on the broad expanses of rock that underlie the falls area, I noticed a slender snake at the edge of the water. With my binoculars, I could see it clearly. Young, it had great big eyes in its head and a long tapered body skinnier than a pencil. Green in overall color, the snake had a peach or coral colored stripe running down its back and a yellow stripe running down each side. Through the glasses, it looked so pretty. It posed for me for a very long time, moving occasionally so I could appreciate its sinewy grace. I wanted to take a picture, but my binoculars had no batteries.

I felt so disappointed. I needed AAA and Michael didn't have any in his camera bag. I kicked myself - figuratively - and felt even worse when I found the teensy, but perfectly formed, frog hopping around nearby that I would also have liked to photograph. Oh, well. I conteneted myself with observation for quite a long while and left it at that.

The walk down to the Falls is long and arduous. There are stone steps that seem to go on forever. We got there about two in the afternoon and stayed out in the sun for over two hours without realizing it. Suddenly, we felt so hot and tired and thirsty, perhaps incipient sunstroke victims. With difficulty, we hauled ourselves up the stairs, stopping to rest at the seating area near the top. We couldn't keep walking and while we waited, cooling off in the shade, I roamed visually around the location with my binocs.

When I went to put them away, I noticed that, hidden under the instructions at the bottom of the carrying case, I actually had those two AAA batteries I needed!! Sadly, I did not have the fortitude to climb back down those steps and look for my snake. I felt so frustrated, I can't even express it.

I learned my lessons - be prepared, then check to see if you were prepared even if you don't think you were.

Sayonara little snake. You were lovely to look at. I hope you live a long and uneventful snake-y life.


Sunday, July 02, 2006

Writers, Anomalies, Relatives, and Fun

Before I get into my personal stuff, I have literary news to share. Three of my writing colleagues/friends have recently published. Sarah Gardner published a chapbook of poems titled “How to Study Birds” which I just received from the publisher ( Winston Derden has a short story coming out in an anthology of stories titled “Able To …” about “ordinary people … extraordinary abilities” ( And Francesco Levato has just published a book of poetry titled “Marginal States” which you can find out more about at Francesco writes poetry that engages social issues. He also is co-editor, with his wife and fellow poet Lauren Matthews, of the literary magazine ink and ashes ( So check out all these excellent writers and BUY THEIR BOOKS. (One must buy the books or the authors go hungry!!)

Book Aside: I am reading like a demon in order to get ten books finished by the end of July. I have been keeping a book journal since July 1986. If I can read another ten books in the next four weeks - which I can, of course – I will have read and recorded my reviews of 400 books over the last twenty years. Twenty books a year for twenty years. That is not bad for someone who doesn’t read for a living. My reading is very eclectic, from the sublime to the mundane with pulp fiction and sci-fi thrown in for good measure, but I love books and haven’t felt the least bit put upon doing it! Maybe once I hit the 400 book/twenty year mark, I’ll review all my reviews and blog the best of the books I’ve read since 1986. Anyone interested?

Since June 9, Alix has been a huge worry for me. She collapsed at work and got a ride to the hospital in an ambulance. (Actually, it was her second time – and I’ve never even had ONE ride in an ambulance!!) The ER doctors did two CT scans and said that she had a colloid cyst or brain bleed and they kept her in the hospital. Then they did an MRI and said it wasn’t really there. Four days later, a neurologist said that she had experienced a seizure (without convulsions) due to a new medication she had started taking in May. They released her with instructions not to drive for several months (due to the danger of another seizure) and we thought everything would get back to normal shortly.

Next event, Alix saw a neurologist through her private doctor. This one ordered more tests – a contrast CT scan where they inject iodine into your veins so they can see the “anomaly” better. The new neurologist showed Alix and me the CT scan and pronounced that she had a 7.2 mm colloid cyst. Next step? See a neurosurgeon.

Thursday I took her to the neurosurgeon, who looked at the CT scan and said, “I don’t know if that’s a colloid cyst. You need more tests.” So now, Alix is waiting for a contrast MRI to be scheduled. This is very aggravating. She feels terrible – has an awful headache that has persisted for weeks – and she’s scared. Plus, she can’t work because of the headache. I wish that we could get an answer and move forward with treatment.

My own experience as the target of medicos makes me highly skeptical of this process. I have had two different doctors give me opposite opinions on the very same day about the same problem. I have bounced around the medical center like a rubber ball, frustrated and ill, getting no relief. I worry so much about that happening to Alix. Well, I can only offer my support and advice based on experience and hope it helps her work through this process.

Alix’s illness has taken a lot of my energy, but there is more going on in my life.

My Cousin Michael’s son, David, is in Houston for the summer training for a Teach for America assignment in Hawaii. We picked David up at the University of Houston on Saturday and gave him a strange tour of Houston, which included a junk shop in Montrose – specializing in used cowboy boots – and the Menil Collection museum.

Menil Aside: I just love the Magritte’s in their collection. It is such a pleasure to see so many of his paintings in one place. Magritte is a favorite of mine because of his visual humor and quirkiness.

After our drive around the area, we went home and had a scrumptious dinner. I made my delish crunchy potato salad (sans eggs, Michael hates hard-boiled eggs) and a colorful fresh fruit salad with watermelon, cantaloupe, Bing cherries, strawberries, and blueberries. Michael grilled pork ribs slathered in KC Masterpiece BBQ sauce (which he swears by). And I steamed some ears of sweet, sweet corn on the cob. Oh, did we eat well. And topped it off with snickerdoodle cookies. Yum, yum, yum. Good food, good company.

David is in his early twenties and hails from Winslow, Arizona. I haven’t seen him for several years and only rarely saw him before that. He turned out to be a fine young man, one whose company for an afternoon is a pleasure. Next weekend, we are taking him to the Museum of Fine Arts Houston to see the Quilts of Gees Bend exhibit.

Quilting Aside: David’s grandmother Donna, my mother’s late sister, was an extraordinary quilter and his aunts (my cousins) quilt, too. As does my mother. Quilting is in our blood, I suppose, so going to an art exhibit about quilts is not that weird!

Today, our son Nick spent several hours with us on his way from New Orleans to Austin. We had a good time, with lots of laughing. Michael prepared a lovely brunch – scrambled eggs with green and red peppers, smoked ham, onions, and shredded cheese – plus hash browns. I contributed toast and fruit salad from last night. Alix joined us. It seemed like old times, the five of us sitting around the table eating a meal together. We had a fun, relaxing time. Not to diminish Alix and Nick’s loved ones at all, the dynamic is just different when we expand beyond our original family constellation. I enjoyed having my children all to myself for a few hours.

Friday night Michael, Tori, and I attended our friend Patti’s 50th birthday party. Happy birthday, Patti!! We had a great time. Patti put out a delicious spread of food, the band – Bil Cusak’s band – played some mean music (although too loud!!), and I got to talk to lots of my friends. A nice party. It reminded me of my own 50th birthday party – now 6 years ago – which I themed “It’s Good to be Queen” (with tanks to Mary Engelbreit). I have been thinking about throwing a party this summer. Not for my birthday, but just because it’s has been six years since I threw a big party and people have been asking … Plus, we had so many nice updates to the house lately, especially the pergola. We’ll see. If I do have a party, it will be in August.

Speaking of parties, I am having a small coffee party in a week for a friend visiting from out of town. Just a few people who have also been friends of my friend. I invited eight people and only four of them have RSVP’d. What is one supposed to do about that? Don I plan for the ones who said they were coming and hope the others don’t show up now? Do I plan for everyone I invited and risk having gobs of food left over? It is a frustrating situation to be in and one I encountered at the time of Alix’s wedding. I guess our society is really losing the niceties of good manners. Perhaps in the next few days, I will get some more phone calls.

Other than Alix’s brain anomaly (she calls it Larry), it has been a lovely weekend with a terrific party Friday, entertaining a charming guest Saturday, and enjoying the company of all my children together on Sunday. And we haven’t even gotten to the holiday yet! I hope the pleasantries continue unabated.