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!

meghan

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)

14 comments:

Anna Alter said...

I'm so sorry Meghan. While I'm sure its a relief in some way to finally know whats wrong, thats still a big pill to swallow. I hope the treatment helps and things can get back to as close to normal as possible.

Libby Koponen said...

Oh Meghan! I'm sorry. It must be hard to take in, even though it's probably better in most ways to know rather than wonder. I hope the treatment works and I hope, especially, that something helps with the extreme fatigue. I do know what you mean about that -- and it IS hard to explain or describe: "something else entirely" is a good way. I'm glad you posted this and hope you are, too.

alvina said...

I'll take you for bloody marys!

cindy said...

Hi Meghan,

Your post popped up on my Lupus Alerts... I've been diagnosed for 12 years and I still sometimes don't want to accept it, for me I can't go in the sun because it flares the lupus and then I have to go on bigger doses of meds. It's hard because I live in San Clemente by the beach and a beach lover.... I'm on small dose of prednisone, methotrexate, placquenil and celebrex and I'm doing pretty well.

You really can have kids... my last two kids I had lupus and it wasn't diagnosed but I was extra tired and achy....My advice is really work with your Dr. to get on the right meds, and adjust when symptoms change.

I'm really into oil painting, and finished landscaping (creating, not doing) our new house... When you feel well create, and when you are tired pace yourself.

I also found it took 6 months when I first was on meds to start feeling alot better.

You'll be okay... find all the good and fun in life and it will help balance the other...

good luck,

Cindy

Kate said...

Hey, Meghan - I'm a long-time Longstockings reader coming out of lurkdom to wish you well as you deal with your diagnosis. I've always enjoyed your posts, and I'll be thinking positive thoughts for you.

Kim Kasch said...

Soooo sorry. My nephew has lupus. You will be in my thoughts.

tammi said...

Hey, Meghan. So sorry to hear this....

Meghan said...

Thanks guys. I'm a little concerned because I've already been on a high dose of Prednisone for the past 7 months and I still get flare-ups. I fear that I have a more serious case of Lupus. I was dissecting the test results and it looks like because the skin sample was taken from a non-sun exposed, non rash area (I don't get rashes) that it means I have renal or other organ involvement. The doctor didn't explain much. But now I'm on 20 mg of Prednisone and 2000 MG of Cellcept. This is a bad time to be diagnosed because my other cousin has been in the hospital for the past 3 months with Lupus and she almost died--had to have a feeding tube put in, her gall bladder removed, etc. Ugh! Scary stuff!

It's okay. That's what the bloody mary's are for. It's good to know I can have children if I want to (though it might be pure agony)

meghan

Laura said...

Meghan,
No pity from me.

Everyone has some kind of $%!#.
Some $%!# is $%!#ier than other $%!#.
I am sorry about your $%!# though.

I hope you can find the right meds! Can't wait to see Seabisquit!
~~Laura

christine tripp said...

Meghan, you have always brought a chuckle into my life (in a sideways sort of way:) so I am so, so sorry to hear this! I agree that it is always better when you know what the illness is, so you can then plot your plan of attack, all the same, I feel your agony and fear. Do not read into this more then it is at the moment for you. Any of us could be hit by a truck tomorrow. Be Proactive. Do NOT let it get you down before it may. At this very moment, depression might get you well before any illness can. Seek some mental health help, in what ever form is comfortable for you. We need someone to talk to that actually listens and doesn't talk back. In other words, SCREW this thing, get mad, get even... not just even, get the better of it and don't let it know your afraid!
Rooting for you here!

Debbie Meyer said...

Hi Meghan.

I too am so sorry to hear of your diagnosis. I've always been a big fan of yours - so, no worries I was planning on buying more of your books anyway! Sending you big cyber hugs and loads of well wishes.

Meghan said...

Thanks guys. And yes, depression is also a danger. I won't lie--getting this kind of news is DEPRESSING as hell. And that can only make things worse. Running has been really good for me. I need to keep doing it even when I feel sick (crazy, but it works).

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christine tripp said...

Running has been really good for me. I need to keep doing it even when I feel sick (crazy, but it works).

Yep, it does work, the high that endorphines (created during exercising) produce causes many a runner to become "addicted". Crazier then feeling better from a run (or even a walk) is light therapy. It really does work (as you most likely know) and it doesn't take much to sit under a grow light (don't need to pay the big bucks for those fancy "therapy" lights found in pharmacies and criminally over priced) for an hour or so and read or paint. With the Winter coming up, the short days and lack of sunshine can play havoc with our mental state. Still, keep an eye on yourself. There are times when only medication can help and there is no shame in needing a drug for any illness.