The "what, the "how" and the "then what" of it all.

Over the past few months I've gotten lots of comments and questions, said with a good amount of surprise like, "Wow, you look really good" or "You seem to be doing great" or even "You don't look sick". Most of these come from people who either don't know me well or haven't seen me in quite some time. It's true though, I do look and seem pretty normal...from the outside and when I'm just sittin around. I've had lots of questions about what Scleroderma means to me, as in, how has it affected my body and my daily life. And of course, people want to know what the hope is for the transplant.

Each person with scleroderma has a different story to tell. In many ways, I consider myself fortunate. My skin is affected but only in my hands, forearms, face, neck, chest and shoulders, with my hands being the most severe area. Even though my hands are the worst and they are limited to some extent because of skin tightening and thickening, I still have, what I consider, good use of them. Mostly I'm just limited in things like opening cans or bottles or doing anything where I have to use a tight grip. My lips have thinned and my nose has narrowed, but these are cosmetic and are not at all threatening to my health at this point. I also experience issues with heartburn, which is very common in people with scleroderma. There is often some scarring and issues with the esophagus but for me, it's as easy as taking a pill each day and I have no more heartburn worries.

The most serious and alarming issue that I'm facing is the progression of fibrosis in my lungs. Their function has been very seriously affected and is what prompted the updated diagnosis and choice to receive the stem cell transplant. Without explaining every measurement in detail, and as I understand it, most adult non-smokers have about 80% lung function. Mine is somewhere in the lower 30s, last it was measured in April. I received chemotherapy once a month for the first six months of the year to address this problem. I had little or no improvement as we expected and continued to pursue the transplant. As far as my daily life, I do have to take my lung function into consideration. I am commonly short of breath in activities as normal as showering, dressing, fixing my hair, etc. I've learned lots of ways to adjust the way I do things and have had to eliminate some things I used to do. I take more baths than showers and give myself more time to get ready than I used to. I don't do the amusement park thing anymore and I'll plan to only go to 1 or 2 stores instead of shopping all day. I'll ask to be dropped off at the door instead of walking blocks to our destination and I might only dance to one song (and rather slowly) instead of being on the dance floor all night. HOWEVER, I can still do lots of things I love and I do in fact still look pretty normal. I feel blessed to still be able to read, see concerts and live music, eat out with my friends, play with my nieces and nephews, shop with my mom, sing in the car and laugh with everyone I love.

So, what are my hopes and expectations for the transplant? First of all, my hope is that there is no longer any active progression of scleroderma in my body. In other words, I want it to never get any worse than it is right now. Secondly, I hope that over the course of the first two years post-transplant, my lung function improves at least 20-30%. And of third importance, I'd love for my skin to soften and be flexible and pretty again. Opening a jar of peanut butter would bring great joy! :) As far as I know, because the transplant is still in the investigational stage, there aren't a lot of published statistics on the outcomes. I know that over the past several months I've learned that the number of people with positive outcomes FAR outnumber those without. With most things in life, there are no guarantees. I am willingly going through the transplant with no promise that I'll get "better".

I understand this but I choose to believe that I'll have many more years to enjoy life and those I love. I even choose to believe that many of the dreams I've had for my life for many years will still happen. I believe that one day I'll play guitar again, that I'll be a member of a gym, and that I'll have a family of my own. I know that someday I'll walk around Rome and I'll go back to Africa. I don't say any of this because I'm trying to be inspirational or to convince anyone of my "great attitude". I'm saying these things so that you each know how much I have wanted/needed your prayers, encouragement, positive thoughts and kind words. I have used them and will continue to do so. Thank you, thank you, thank you.