Tuesday, November 22, 2011

Thanksgiving Thoughts

Once again the holiday music is beginning its annual quest to turn our brains to cheese, the leaves have fallen, the temperature has dropped precipitously, and the national weather service has issued its first Winter Storm Watch. Obviously, this means it is time for me to reflect deeply on an important matter: Why on earth did I ever leave California? What was I thinking? Why did I trade 65 degree winter days for -20 ones? Hmm...

Anyway, it's also Thanksgiving week, as can be determined from the number of crazed drivers zipping between supermarkets with bloodshot eyes and grocery lists glued to their foreheads. So I am once again attempting to walk that ultra-fine line between expressing honest gratitude for the things lupus has taught me to appreciate, and sounding like a Pollyanna who should be whacked over the head with a frying pan for excessive optimism. In all honesty, this year has been a truly dreadful year. I haven’t caught malaria yet, but almost everything else that could have gone wrong has. Needless to say, it took a bit of thought to come up with my annual list, but here it is:

Kindle/eBooks: For those of us with arthritic hands, holding a book can be quite painful. This means that one is more likely to read books based on their weight--not a great way to choose one's reading material. eBooks change all that. I have War and Peace, Anna Karenina aaannnnnnd a whole lot of of books I actually like all on one thin bit of technological goodness. Added bonus: a kindle is a lot easier to take into the ER than a backpack full of novels would be.

Handicap license plates: Universities like to fleece students, staff and faculty out of money in way they can. This includes parking. You are obliged to be on campus, but if you want to drive yourself to work/school, you must pay through the nose for the privilege. [I should clarify that by "want" I meant "can no longer safely take public transit because its cold and flu season and you're immunocompromised"].  And if, heaven forbid, you are a grad student, the nearest available parking lot is halfway to the next state. Enter handicap plates. I can park almost anywhere I want, and the University is legally unable to charge me for a parking permit. This means I can avoid the long walk in the sun between my building and the grad student parking lot, which would normally cause an instant flare. Less pain + less fever + free parking = thankful Sam.

Coscto: I buy my prescriptions, eye-drops, and over-the-counter medications (such as aleve, Tylenol, etc.) at Costco for WAY cheaper than the usual retail price. And, when the newest immunosuppressant makes me too nauseous to eat, I can stock up on protein bars that taste like candy. They say they’re healthy right on the box, so I can feel highly virtuous when I’m keeping myself alive on chocolate-covered nutritional goodness.

Chilled caffeine: I was raised to consider caffeine a drug. I do. Caffeine is a drug, and I use it as such. When I can hardly hold my head up for sheer fatigue, caffeine is what keeps me employed. However, the caffeinated beverages of choice for most people—coffee and tea—are really not good options when one has a fever. Which, of course, I usually do. Hence chilled caffeine. Some people prefer iced coffee, others iced tea, and still others diet [your favorite soda here]. I would prefer an iced caffeine IV, but haven’t managed to convince the insurance company to cover it… yet.

Supportive people: There aren't many people who understand lupus (or any other chronic disease). So when I come across someone who does, it seems downright miraculous. I am very blessed to have a caring doctor, boss, family members, coworkers, friends, etc., many of whom have seen the effects of chronic illness on other people in their lives. These are the people who understand that I'm not just skiving off if I leave work early. They are the doctors who fight with specialists to get me the care I need. They are the people who don't look at me strangely when I park in handicap spaces. There aren't many of these people, but those who exist revive my hope in humanity.

Friends who run 55 miles to raise money for my medical bills, and the friends who support them when they do so: Enough said.

Early cancer detection: Sorry, I know this one isn't all that amusing, but the fact is that if my doctor hadn't caught my melanoma when he did, it could easily have killed me. The five year survival rate for melanoma when caught at the stage mine was is 92%. Had it metastasized before being caught, this would have dropped to 15%. My doctor probably saved my life by deciding to run a biopsy. This has kept me from trying to kill the man on more than one occasion, which is valuable in and of itself.

Needless to say, there are other things for which I am grateful, but these are a few that I feel I have learned to appreciate because of my being chronically ill. (And it should go without saying that I am still grateful for everything on last year's list).  Lupus is not a positive thing. I can pretend it is...sometimes... but the fact is that it really sucks. So, all joking aside, I do appreciate the opportunity Thanksgiving gives me to sit back and realize that some good does come out of being ill all of the time. Doing so helps me get through the rest of the year without going completely bonkers. 


  1. I am thankful that there is a Jennie II. I am sorry that you have lupus and amazed you can be so thankful and gracious. I love you. G'ma

  2. I'm thankful that there is a Jennie I! I've had a good example when it comes to graciousness.

  3. Sam, I'm happy that you're still able to walk this earth and share your opinions and at times slightly crude humor. I love you!

  4. *clears throat primly* Not "crude," dear, "dark." That's my story, and I'm a-stickin' to it. :)

  5. The old know what the young do; but the young don't know what the old do. Except for those with incurable (so far at least) debilitating disease.

    Old age comprises a rearguard action against an enemy that is 100% certain of winning at some point. But in most cases it scores its victories incrementally. You get floaters in your vision. Odd pains that appear, disappear, reappear. Joints get less jointy. Falls heal more slowly. Diet, exercise and the consolations of philosophy can beat back the darkness temporarily, but always with the knowledge that it's just biding its time.

    This is not to say old age is all bad. Especially for those of us who are empiricists--it sure beats the alternative.

    Moreover, mortality confers intensity, and renders small victories large (for oneself at least). It also confers a sense of proportion--of knowing what's really important and what is not--something it's hard for most youth to grasp (no fault of their own--just the way it is).

    But youth who have incurable debilitating diseases get the 360 on the Human Condition ahead of time. They get to understand what takes most of us many decades more to grasp.

    Not to say that if given the choice of a DD or callow youth, I'd choose callow youth in a New York Second.

    But we're never given that choice, are we? Sperm meets egg, uterine environment meets fetus, epigenetics ensue, thence cometh you.

    And note that the you with the disease would not be the you you are if the genes got rejuggled and produced someone else. That someone might be healthy as a fat earthworm in rich loam, but that someone would be someone else, not you. So to wish for non-Lupoid you would be to wish not to have existed.

    Alexander Pope referred to "this long disease, my life." To which anyone steeped in Bushido would say "Shikata ga nai."