Congratulations, you have Lupus. Now what?

So you have Lupus now what other than strap yourself in to the wild ride you're about to go on unfortunately there isn't much in the way of a how-to guide however after 25 years of living with it I guess that somehow makes me an expert I think the first thing you need is some grit and determination because without those things first you won't make it in life you have to be tougher than the thing that is trying to kill you. Remember to take time to mourn your old life and your old self. There are going to be many days where you feel like people just don't get it and to be honest with you, they don't.  When I first got diagnosed there were zero support groups and I knew no one with lupus. Find your tribe, find people that just get it. It helps more than you know.  trust me,  lupus was the one word none of us ever wanted to hear in life.   Back when I got diagnosed it was pretty much a death sentence I turned 40 this  year and I will be completely honest with you I didn't have any plans because I didn't plan to live this long when I first got diagnosed.  I was told get my Affairs in order because chances are I wasn't even going to make it to 21 let alone 40. So for me it is kind of a novel idea turning the age that you weren't expected to live to. I found a way to celebrate not just my birthday but the day I wasn't supposed to make it to. The one thing you want as a kid or even as an adult is to be around people that are like you.  Growing up at 16 with lupus I knew no one like me. At that time it would be a number of years before I would meet the people who would become my me too group. The people that just got it. When something like Lupus is dumped in your lap you dont even know who you are anymore,let alone who your tribe is. You get there though. I didn't have any plans for 40 other than death. But this has definitely been the year of learning to live, survive and be happy. I brought a house near the beach. Granted I've spent the past month unpacking but it feels like home in every sense of the word. Im happy and at peace for the first time ever and for the first time in my life I'm making plans to live instead of making plans to die. And it feels good to be on the other side.