10. Life comes at you fast. It can come fast, it can go fast. "Make every moment count" means more than you'll ever know until you come face to face with just how limited those moments might be.
9. The little moments can become big moments when you stop and savor.
8. You may develop a rather polarizing love/hate relationship with "big pharma" and related industry. This might require some adjusting of ideals, and you're going to have to learn to be okay with that. They're saving your life. They also hold your life in their hands (this can really piss you off when it goes badly).
7. You might have to start doing your own fundraising towards a cure. There's no really nationalized recognition month, like for some cancers (ah-hem... it's actually November for PH), and corporations aren't going to splatter their merchandise with your purple ribbon. Quite frankly, even the people closest to you might not mobilize on their own initiative (for many reasons). So be prepared to lead the charge. If not you - then who?
6. When you do those fundraisers and that awareness raising, the people you might expect to be there sometimes just... aren't. You can't let this be anything other than what it is. Again, for whatever their reasons. Holding on to that won't make your own work or journey any easier. Let it go.
5. When you do those fundraisers and that awareness raising, people you might never have expected will come bursting through and do amazing things for you. You're going to be touched to your core at the generosity of people and what their care for you and your cause will do.
4. You're going to fall in love with your community. You're going to glow at their triumphs. You're going to be shattered when they suffer. You're going to sit in your home and weep uncontrollably when the disease you share takes them away. You can't help but internalize it. If you let it, this grief will poison you. But if you use it, it will serve to push you only to work harder. But, I will be honest, this part doesn't ever get easier.
3. You are going to loose parts of your life, parts of your plans and hopes and dreams, that you can't get back. This is going to hurt. Take time to mourn those. You might have to do this more than once, and it might hit (again) when you least expect it. But don't stay too long in that black place. There is no moving forward there.
Take the time you need, and then lift your head, shake your shoulders, and resolve to move on. Replace those lost things with new things that make you smile. That make your heart sing. You might discover something new and beautiful you might otherwise have never had.
2. Take care of all of you. While you're attending to your medications and doctor's visits, the demands of your family, your daily tasks... make sure you leave room for you. Don't forget to take time to breath (mindfulness and meditation can change your life), and make sure you fulfill the side of you that loves the arts, or nature, or... whatever it is. You might have to find new ways to do it. But still do it.
1. And the top thing I have learned... you never, ever, ever have to accept the status quo. Don't like the outcome predicted for you? Fight like hell to change it. Don't like the way those involved in your care conduct themselves? Fire them (if at all possible), or go charging in and make a (polite and well documented) stink until it changes.
The outcome of all this has little to do with the disease, the doctors, the medications, or even most of the people around you. It is you. You must take charge. You must advocate. You must make the changes.
And then, no matter the outcome, there will never be a "she lost her battle" at the end. Instead, it will be a fight well fought. A life worth living. A journey and an end to be proud of. And, if you are really lucky, the world left better because of it.