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.


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