Well... here we are

I wish I were brave.


I've got to tell you, I'm not. It's been a few months now, and I'm still not brave. I had to ask everybody to back off and let me deal with things a while ago. Let me explain, as simply as I can, what I've been carrying.




I have a new doctor. He's wonderful. He's a liver specialist who deals with the disease I have (Primary Sclerosing Cholangitis). He gave me information and guides to really get into the middle of what this means for me.




I'm not a 40+ dude with jaundice and pain and itching. If I were, I would be normal. But it's me we're discussing, so there's no way it's going to be that easy.




I'm a 31 year old female with no symptoms unless you break out the good ole radiology angle, and no predictable way to understand exactly what timeline my body will take with this.


This is what the statistics say:


1. My liver will probably stop functioning 10-15 years from right now. Putting me right at 40, typical diagnosis age. This usually means transplant. Transplants do not cure PSC; the disease may just come right back, despite a healthy new liver.


2. Average prognosis from date of diagnosis to death is 25 years. Putting me right around 55.


There are a lot of practical things rushing through my mind. Like the fact that I've got right around 25 Christmases left to cure this. There are wildly impractical things in my mind too. Like how much I wanted to spend at least a decade living abroad. I'm really pissed I don't have a puppy right now, either, but I assure you that if my apartment allowed it - I'd be snuggled up with a puppy right now.


I'm not brave. I'm scared. I want to see my beautiful cousin get married this fall. I want to see my youngest niece and nephew graduate college. I want to celebrate being married for 60 years to the man who, somehow, is standing next to me through all this.


I guess part of all this is that I'm still shocked. I don't know what to do, because there's nothing to do. I'm proactive. I'm a fighter, and a survivor, and all kinds of other words that mean flexible and able to handle extreme conditions. I don't know what to say when people ask how I am - because if I answer honestly, it sounds dire. If I lie, it makes sense to people, because I'm losing weight again (I hate steroids, have I mentioned that?) and I seem to have more energy.


I don't know what to say when you ask how I am. And I really have a hard time imagining my future right now. I've got six months until my next serious talk with my liver specialist. That's six months to work hard at being healthy, making time for the people who mean the most, and loving the life I have. That's as far as I can see. It will get better, and I'll settle into living with this than living in fear of this, but for right now this is all I have.


I'm making choices that, I hope, are best for me and those I love. The climate of internet-stalking my real-life friendships has really sucked for me - I misunderstand things, get my feelings hurt and stress about it. So I stopped accessing a lot of internet information from the people closest to me. Now, I take the friendships I have on the terms they are offered to me, not some unspoken comparison to what I observe, or in reaction to something I misinterpret. It's improved a LOT of my close relationships, and I appreciate that.


Please be patient with me. I'm trying to handle all this, plus normal life. I'm not strong, or brave - I often fail at making it through the day without this getting to me. The last week has been the worst so far - but I've had friends visit, or call, or random regular life surprises that have cheered me immensely. All it takes is breakfast with a friend from out of town, or exchanging the Christmas gifts that were really seriously delayed with a favorite old coworker. It's truly the little things that encourage me into another day, another step forward, another plan for life to come.


So I love you. I really do. If I ever loved you, I love you still. I don't know what else to do right now, except love and try to find my way in what has been the scariest, life-changing-ist 6 months I've had so far.