Red I

Got platelets?

Idiopathic: an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.

From Greek ἴδιος, idios (one’s own) + πάθος, pathos (suffering), it means approximately “a disease of its own kind”.

“A high-flown term to conceal ignorance” – Isaac Asimov

“From the Latin, meaning: ‘We’re idiots ’cause we can’t figure out what’s causing it.'”- House, M.D.

Idiopathic Thrombocytopenic Purpura:

Idiopathic: cause not known

Thrombocytopenic: lower than normal number of platelets in the blood

Purpura: purple bruises caused by bleeding under the skin

In simpler terms, my body is fighting a war within. Mysteriously in 2005, it began attacking its own platelets and destroying them. ITP is a diagnosis of exclusion. When doctors rule out every other cause for low platelets, they chalk it up to ITP.

Platelets aid in clotting, so low platelets put you at risk for bleeding. In an adult, a normal count is about 150,000 to 450,000 platelets per microliter of blood. My “normal” seems to hover between 30,000 and 50,000. Under 20,000 is a concern. I’ve “crashed” and dipped under 10,000, which requires treatment (usually Prednisone), and at times, hospitalization.

I’m not going to harp on the disease itself. It is what it is.  Not contagious, not genetic. There is no cure, just therapies to increase platelet counts temporarily. There are some amazing support sites and informational sites out there for ITP, like the Platelet Disorder Support Association. If you or a loved one have been recently diagnosed, I highly recommend the aforementioned site. ITP is a fairly common auto-immune disease, and thankfully most people can live normal, healthy lives with it.

As I sit in my Hematologist’s office, watching people coming and going for various infusions and chemo, I thank my lucky stars. When the doctor is running behind schedule, I never complain. I want to be his least important patient. I’d like to keep it that way.

There is a certain stress, however, that comes with an idiopathic diagnosis. Knowledge is power. Not knowing what causes the problem in the first place leaves you feeling helpless. It is stressful when you realize your body is silently “betraying” you. Not being able to find a rhyme or reason as to why your platelets “crash” one month after being at record highs the month before is frustrating. Many ITP patients “know” when their platelets are low. Obviously if you can play Tic-Tac-Toe by making bruises on your skin, your platelets are pretty darn low. Other people swear they know by the feeling of fatigue, or what I call “brain fuzz”, even though these are not “symptoms”, according to the experts.

So what to do? Give up tackle football. No more tattoos. No gin and tonic (quinine’s a no-no) and stay clear of Ibuprofen and aspirin. Again…thank some lucky stars. It’s not debilitating, it’s not terminal.  After seven years of wrestling with it, I’ve begun to see some ebb and flow. Stress and the controlling of stress (via exercise, yoga, better diet with less refined sugar, more sleep) are the closest I’ve come to establishing a pattern.

There is no antonym for “idiopathic”. But I would be happy with “spontaneous unexplained remission”.


Can YOU Say NaNoWriMo?

National Novel Writing Month

Don’t worry. My mouth had a hard time pronouncing it at first, too. But my brain knew from the minute it learned about National Novel Writing Month, it wanted to participate this year.

For those of you unfamiliar with NaNoWriMo, it’s 30 days and nights of literary abandon as you attempt to write a 50K word novel from start to finish within the month of November. Now, April may be the cruelest month…but November, she’s a bitch, too.

There’s all the pre-Xmas and Hanukkah hoopla, there’s parent-teacher conferences, and my kids’ Variety Show to attend. There are all the events which I (over)volunteered myself for with the school’s PTA. I’m still reeling from the month of “ill” in September when half the house was sick and caused my platelets (due to a pesky auto-immune disorder I have called ITP) to take a nosedive throughout October. As well as the fact that my amazingly healthy dad who normally defies medical odds had to have major surgery yesterday and I plan on spending a lot of quality time with him during his month-long re-cooperation. I’ve got a road trip planned with my childhood friend Steph to see the mighty Judas Priest on their farewell tour, too! Oh, and did I mention Thanksgiving? It happens to be one of the busiest weekends of the year for touring rock bands. We will most likely get stuck in massive traffic caused by travelers on a quest for turkey while we attempt to “commute to work” in NYC for moe.‘s two-night stand at Terminal 5 that weekend.

But hey. We do gain an extra hour in November. And I plan on using all 60 minutes of it writing!

So family, friends and followers be fair-warned: there will be no spare time this month. Only NaNo time. I’m a girl on a mission. The Program Director of NaNoWriMo advised us to shout it from the rooftops, as “the more people who know what you’re working on, the more accountable you’ll feel and the likelier you are to hit the 50,000-word goal.”

Curious to know what I’ll be working on? Stay tuned!