Reality comes home.

So I have this disease, Primary Sclerosing Cholangitis. I have written about it before, but if you aren't familiar with it, and most aren't, you can learn more here. I have been very blessed thus far to have minimal symptoms. Despite months of worry initially, I am assured by my doctor that I am in the absolute best condition someone with this disease can be in. It is likely that I will never need a liver transplant, though that is never a guarantee. And it is very likely I will die with this disease long before I would die from it.

It is quite easy to go along in life with this knowledge and not have any anxiety about having PSC. I am reminded daily with a strange sensation in the right upper quadrant of my body, it usually feels like there is a brick sitting just under my ribs, but is not painful. Most of the time anyway. Occasionally I get some aches and pains in that area, and just feel yucky. But I have not yet suffered through loss of appetite, fatigue so bad I can't get out of bed, jaundice or the dreaded itching. Itching like you would not believe, all over your body, all the time. Yeah, I have been lucky so far. Knock on wood.

I am part of an online group who have, literally, been a lifesaver for me. If not for them, I would have worried myself to death by now. Trust me when I say that when you are diagnosed with a disease you have never heard of, the internet is not the best source of information. Especially for PSC. What I found last year was incredibly grim. When I found my group, I was quickly reassured that the information I was getting was outdated and bleak, and far from the truth. The bright spot in this is that we have indeed come such a long way in learning about and treating PSC, our outcomes get better every day. Leaps and bounds are being made, yet the cure is so elusive. Being able to share experiences with others who have been there, some for decades (see?) and being privileged to stay on top of the latest information has been such a gift. And getting to know some of my PSC pals on a more personal level has been icing on the cake!

So yesterday, I was devastated to learn one of us has succumbed to this disease. Many others have died from this, remember Walter Payton? Countless others, friends of my friends, have lost their battles as well. It can't imagine it gets any easier as time goes on, and you lose more than a few friends to the same disease you are carrying in your own body, but the first time sure does rattle you. Fred is the first person I have "known" to die from PSC. 'F-Dog' as he is known in our circle. Fred's wife Shelley has been his greatest champion, a passionate advocate and a loving caregiver. She has been there for me, offering support, comfort and encouragement many times, always with such warmth and a sharp wit and sense of humor that puts me right at ease. I hope in the days to come, I am able to give a fraction of that back to her at this awful time in her life.

I will do my best to remember that we are all so different, no two people carry this disease the same way, or progress in the same manner. I will do my best to remember that I am in the best position I can be in, and that I am for the most part, healthy. And I will definitely remember that the fight is far from being won, and we must do all we can to find a cure for this disease. "Together in the fight, whatever it takes".

Rest in peace F-Dog. We'll take it from here.