Saturday, March 29, 2014

One In A Million

I know I need to catch up on all the great comments but really wanted to say thank you so much for all the amazing support and swearing on my behalf!

One in a million. According to some sources, that’s the odds of getting this disease I have. Some places claim it may be as high as 1 in 200,000, but they all seem to agree it’s rare. And unlike diabetes or celiac or lupus, it has a long name that’s hard to spell and even harder to pronounce and that NOBODY seems to have ever heard of before. My only risk factor for getting it was a drop of diluted Jewish blood courtesy of my father’s side of the family tree. Which is sort of funny to me because I’m not considered Jewish because my mother isn’t, however I’m ‘Jewish enough’ to apparently get this disease. Go figure.

Nine in ten. More than fifty years ago, those were the odds I’d die from the actual disease. Today those are the odds, I’ll survive it. Some studies claim the mortality rate is as high as 30 to 40 percent (but I’m going to stay on the optimistic side here). The downside of these odds is that the traditional treatment usually requires a scary high dose of steroids over a long period of time to put the disease in remission and in the majority of personal stories I’ve read, although they reached remission, it came at a high cost.

Now the thing about odds are that they are just numbers. And unlike something like the lottery, nobody is ever equal. It sort of reminds me of my ‘writer querying days’ when we’d try to calculate our odds. But you really couldn’t because no manuscript was equal. Some were better written, some were the ‘right story’ at the ‘right time’, some clicked better with certain agents, etc. And it’s like that here…everyone is different. The disease is different, reactions to medications are different, etc. 

I’ve done a lot of reading over the past few days. Not those scary websites---no I dug deeper for the real stories. Kinda like looking for this diseases's version of blog land (although it's nowhere near the size of here). And it’s given me a lot of hope. Yeah, there was a lot of scary stuff, but it’s also helped me to see how lucky I am. For most people, by the time they are diagnosed they are usually so sick they’re in the hospital because they can’t eat or they’re fighting off serious infections. That’s because this disease is so rare, it often is misdiagnosed. They say the average number of doctors to get a diagnosis is around ten.

I had two. The first being my primary doctor who actually suspected the disease. Because of this, I am not that sick. No hospital. No serious infections. If this was cancer I’d be Stage 1 or maybe even Stage 0.  I am just not that sick. I am not a doctor, but this does make me hopeful that this means the amount of steroids and duration to get me into remission will be a lot less. And if not, there’s lots of new drugs and therapies that have worked on others without the mega-risk of the steroids. I’ve also found a doctor covered by my insurance who specializes in the disease. And if we don’t like her or can’t get the referral her, we live an hour away from one of the best research hospitals in the country and Daddy says that’s where we’re going next.

One in a million. I once called Daddy that back in the early days. It wasn’t as sweet as it may sound at the time. We had only known each other a few weeks but we’d been e-mailing about some deep subjects—religion, politics, sex. And there were questions like... ‘what would you do if you got a girl pregnant out of wedlock’ and ‘would you ever cheat’. I was coming out of a very bad relationship and Daddy’s answers always seemed ‘way too good to be true’. So a part of me at the time thought it was all a line. So I wrote to him, slightly disbelieving, if “he was who he said he was, then he was one in a million.”

But I’ve learned Daddy’s a man of few words and rarely says something he doesn’t mean or intend to do. Because he did get a girl pregnant--me.  And despite neither of us being old enough to drink, he did exactly what he said he would in those first few weeks I knew him. And during a decade-long sex drought when he probably should’ve cheated, he kept his word and never did.

Daddy told me not to worry about this disease. He’s going to make sure I have the best doctor and the right treatment, and he’s not going to let it get that bad. And that no matter what happens…whether the drugs take my sex drive or make me go crazy, he’s not going anywhere. I’m going to be okay. He’s going to be okay. We’re going to be okay.

And I believe him. Because he really is my ‘one in a million’.


  1. OH Aurora this sounds so much about lucky! A family doctor with a keen eye, another specialist that is covered by insurance, close proximity to an excellent medical facility...catching it early. Those are things to be grateful for for sure!
    And of course a 'one in a million' husband!

  2. aw, you're both one in a million! Thank goodness you found each other.

    and thank goodness this got caught early - fingers crossed it gives you an advantage xx

  3. Aurora, I'm so happy to hear you sound so positive and so glad there is much to be grateful for ... that you had a doctor who was able to diagnose such a rare disease and caught it early and that you have found a specialist who is covered by insurance. Your husband is definitely 'one in a million' too :)


  4. I love your history with Phillip! So much could have happened from then until now- how amazing to have the love you do!!! Awesome!

  5. I love your history with Phillip! So much could have happened from then until now- how amazing to have the love you do!!! Awesome!

  6. Aurora - I've been out of the loop for a little bit and come back to hear this. I'm really really sorry. I want the best for you - happiness and wellness - and I'm so sorry to hear this turn of events. You will be in my thoughts and my prayers. Your husband is wonderful and will take such amazing care of you. I know that. I'm glad you've found a specialist. I know that Phillip will help you to advocate for the best treatment and care possible. *hugs*