Keep your Mask on.

The title of this blog comes from an earlier encounter with a practice nurse. During the H1N1 strike here in the capital, I decided to go into the doctor to make sure I wasn't developing pneumonia, as is a common development when one has H1N1 and is on steroids.

I've had pneumonia in the past because of the steroids and it seemed like a good excused to open the wallet and let them strike.

My daughter and I were forced into face masks and into a side room. The nurse strides in, equally masked, and asks why we're there. As they always do, in that oh-so helpful voice.

Her: So what can I do to help you?
Me: My name is Jennifer and I have a rare disease called Familial Mediterranean Fever. I'm currently taking Prednisone and I'm worried I'm developing pneumonia as I have a lot of chest pains.

She gasps and moves dangerously quick across the room, recoiling in fear.

I realize she's terrified of catching this nasty, horrible disease and so I say: It's ok, I'm not contagious.

And I realize that I'm a freak and please G-d just let them give me some antibiotics so I don't get paraded through the circuit of wary eyes.

A doctor, gloved and masked, comes in and no, no pneumonia but please come back and refurnish our rooms, I mean, come back and see us if the pain remains.

It's lonely having a rare disease. People think it makes you feel special, makes you stand out. But it doesn't. It makes you look like a flake for being too tired to meet friends, makes you look like a hypochrondriac when your husband has to stay home and look after your child. It makes you look like a freak for wanting to have more children, as was your intent since you were 9 years old.

Rare is lonely. It's an empty feeling. No one understands the disease. People think you're contagious. Only a handful of doctors have read about it and most people think you have gout when you tell them you're taking colchicine.

I've found that you have to reach out more than recoil with your own embarrassment, your own shame. Reach out and annoy everyone you can.

Depression is common in rare disease patients. Being a guinea pig for people, the drugs, the diseases, the public reaction -- it all adds up. And it's lonely. I think the loneliness is one of the biggest causes of depression in rare disease patients.

You tend to sit on the sidelines, not by choice, but by simple actions of the disease itself, and you watch people have fun. Be well. Enjoy life. And you try, honestly you do, but sometimes the magnitude of being alone gets to you.

I've had a kidney infection/inflammation for more than 2 weeks now. I've been stuck at home, at the mercy of these achy bean shaped dictators, and it's lonely. I miss my life. I miss being active and engaging and I miss my brain working.

But most of all, I miss human contact. I wish there was someone else there that I could call and say, you know, this disease is getting me down. And they'd say, you know, I know. I get ya. Bastard disease.

And I'd agree, bastard disease. And we'd laugh and damn the disease and how bad we feel.

But for now it's just me and the myriad of emails I send asking people for any FMF articles they come across. Offering myself up as a guinea pig if it will just make me better. Or at least help me find a sympathetic shoulder.

It's been 13 months since my clinical diagnosis. I think you spend the first year struggling against your own feelings of a life sentence and it's after that critical first year you start to accept your fate and reach out.

"An invisible red thread connects those who are destined to meet regardless of time, place or circumstance. The thread may stretch or tangle, but it will never break." -Chinese proverb

Here's my end of the red thread. Now I just need to wait.