Thursday, October 09, 2008
I have Lupus
Or… SLE—Systemic Lupus Erythematosus. I’ve been saying this in my head repeatedly for the past week. I’m trying to get more comfortable with the idea. I’m not at all comfortable yet. Maybe I never will be. I thought this might be good practice. To be frank, the whole idea of it makes me cringe—it doesn’t sound very noble. “I got in a car accident,” sounds more “cool,” if that makes any sense. SLE attacks the connective tissues in the body--sky's the limit!
After two and a half years of searching and after wracking up 100,000 dollars worth of medical bills (don’t worry, the health insurance took the tab), last week I got “the call.” I have to say it was rather anticlimactic. No one dumped any balloons and confetti over my head and said” congratulations!” but no one ran out from the streets to give me a hug, either (it’s okay, I don’t much like hugs anyway). The rheumatologist said, “I got your fax. You have Lupus.” I said, “Are you sure?” He said, “Yes.” I said “Oh.” He said “Would you like treatment?” I said, “Yes. I’ve been taking Prednisone, you know.” He said, “Yeah, I know.”
Prednisone (a steroid with serious side effects) happens to be a treatment for Lupus. I’ve been on a very high dose of it for the past 6 months, despite EVERY doctor telling me to get off it. “It’s just masking the symptoms,” they’d say, and “Of course it makes you feel better, it would make anyone feel better.” But I knew differently. I knew I was treating my symptoms. I’d done so much research that the neur-ophthalmologist asked if I was a doctor. I laughed but he was serious. It’s something when you can fool a top doctor!
Anyway, now I have a lovely choice—I can either take a chemotherapy drug, which might cause hair-loss, or an organ transplant drug, which will cause any baby I might have to be certainly deformed (while on it). I chose the latter. After doing some reading it looks like I might not easily be able to have children anyway. Having a child can be risky to a Lupus patient (or shall I say victim) and one must be symptom free for 6 months or some such (this is what I read somewhere anyway), and I haven’t been at all symptom-free since the start of this.
And when was the start of this? I remember feeling fatigued and having a lot of pain when I started work on Aliens Are Coming! Things only got worse as time went on. I remember one editor a while back saying that she didn’t understand why I used to turn my books in on time, or even early, but was now having so much trouble. Well, this is your answer. And believe me, I was and am WAY more sick than I’ve been letting on. Sometimes someone noticed that I didn’t look right and asked if I was “okay.” I always said, “Yeah. I’m fine.” Lie. I am a big fat liar. I would be (before I self-prescribed Prednisone) nauseous for literally 3 weeks to a month at a time, almost non-stop. Then it would on occasion escalate and I would vomit. I vomited in the car, almost in the subway countless times, at physical therapy, at work, and so on. The pain has woken me up every night for the past 2 years. I have had opposite problems too—extreme fatigue (not like not getting enough sleep – something else entirely, which I can’t quite explain) and would fall asleep while driving at 3 in the afternoon. It was hard to stay awake at work when I was like that as well. And to be perfectly honest (this admission will be a big first) I was suicidal for a short while. No doctor could help me or knew what was wrong with me and people, I could tell, didn’t believe me. One person in publishing even asked “Are you a hypochondriac?” That is not something you want to hear, especially when you’re suffering. Then a lot of annoying folks would say things like "Just eat right and take more vitamins." Then there was the doctor who said, “You’re fine. Chill out and do some yoga,” or the one who demanded I “see a psychologist.”
So I guess now I have a lot of figuring out to do. How will I continue to make a living when I’m sick so often? How can I maintain my part-time job for health insurance? How can I ever really do school visits? What happens if I get worse? My cousin died of Lupus when he was in his early 20s. I read that over 20,000 Americans die of the disease every year. I got a book on it and it suggests getting power of attorney documents and looking into finding a patient advocate in case I, the patient, am unable to speak for myself. This isn’t at all depressing. Not even slightly (at least my sense of sarcasm hasn’t taken a vacation). I, of course, have to also deal with the fact that the Lupus has caused systemic nerve damage (I think this is rare – only 10%), caused by vasculitis—inflammation of the blood vessels. So that's more pain and agony.
So, there will be some good times ahead for me. Hopefully with the new medication I can get on with my life, but I must realize that it will never be the same. I’m not saying this to be dramatic--it’s a fact. But most people live relatively normal life spans, so I’m hoping for the best.
I’m saying all of this for a few reasons. 1) As great as making books can be, there are more important things in life – always remember that when you get too stressed over a deadline! 2) please believe someone when they say they aren’t feeling well 3) buy my books because I’m going to need the extra cash!
p.s - Seabiscuit is coming out soon! Stay tuned.
p.p.s - I really don't want anyone's pity. Why not instead complain about the economy or George Bush--those are always a fun topics! Or let's talk about Palin's wolf shooting. I will, however, accept sympathy gifts in the form of cases of beer... or you can take me out for a bloody mary (my latest drink of choice)