Sherrie, I had no idea you were suffering from something so painful and so personal all of these years. I find it amazing that you are able to raise three kids and go to work and school while coping with this. I think it is both brave and helpful emotionally to share the downs too of our lives. I have a group of friends who I love dearly, but it seemed to me that we were only sharing our hightlights and best-ofs. My son Cameron,one of my eight year old twins, was diagnosed with vitiligo in the last few years. We too tried high potentcy steroid cream with no real results, other than the thining of his skin. Vitiligo is an auto-immune disease as well. They think the t-cells attack the melanocytes in his skin and it results in patches with loss of pigment. Right now he has a white patch the size of my hand on his lower back and a few near the nape of his neck. They are expected to get larger, eventually losing all pigment everywhere. But of course, no one really knows what will happen. Luckily, Cam has the non-typical vitiligo as it isn't on his eyelids, elbows or knees. It just started with a small scratch that he got one summer out playing and being a kid. The scratch healed to a thin white scar and then started spreading outward, like spilled milk. It was really upsetting to me to know there is no cure, they aren't sure of a cause and the only treatment that "sometimes, might maybe work" didn't do any good at all. My husband took it a lot better than I did, being a medical person, and he sees all of the benefits: No pain, no downsides other than social. He really could not figure out why I was so unhinged over this. Finally one day he told me to go talk to my friends because I was truly not getting what I needed from him and we both knew it. I confided in a couple of friends and the result was amazing to me. The diagnoses didn't change, the circumstance didn't change, but my attitude and feeling of not being alone were changed. Suddenly these friends I had known for years were sharing things with me too, and I felt really comforted. I know that there isn't a lot we can do to help, but sometimes just knowing someone else knows and is thinking about you makes all the difference. I know how difficult it has been for me thinking about Cameron and his future, but it would be so much harder if he were truly suffering from pain constantly! It breaks my heart to think you and your daughter are both suffering. I hope being able to talk with us has made some small portion of it more bearable. Love, JoAnn
Sherrie,
ReplyDeleteI had no idea you were suffering from something so painful and so personal all of these years. I find it amazing that you are able to raise three kids and go to work and school while coping with this. I think it is both brave and helpful emotionally to share the downs too of our lives. I have a group of friends who I love dearly, but it seemed to me that we were only sharing our hightlights and best-ofs. My son Cameron,one of my eight year old twins, was diagnosed with vitiligo in the last few years. We too tried high potentcy steroid cream with no real results, other than the thining of his skin. Vitiligo is an auto-immune disease as well. They think the t-cells attack the melanocytes in his skin and it results in patches with loss of pigment. Right now he has a white patch the size of my hand on his lower back and a few near the nape of his neck. They are expected to get larger, eventually losing all pigment everywhere. But of course, no one really knows what will happen. Luckily, Cam has the non-typical vitiligo as it isn't on his eyelids, elbows or knees. It just started with a small scratch that he got one summer out playing and being a kid. The scratch healed to a thin white scar and then started spreading outward, like spilled milk.
It was really upsetting to me to know there is no cure, they aren't sure of a cause and the only treatment that "sometimes, might maybe work" didn't do any good at all. My husband took it a lot better than I did, being a medical person, and he sees all of the benefits: No pain, no downsides other than social. He really could not figure out why I was so unhinged over this. Finally one day he told me to go talk to my friends because I was truly not getting what I needed from him and we both knew it. I confided in a couple of friends and the result was amazing to me. The diagnoses didn't change, the circumstance didn't change, but my attitude and feeling of not being alone were changed. Suddenly these friends I had known for years were sharing things with me too, and I felt really comforted. I know that there isn't a lot we can do to help, but sometimes just knowing someone else knows and is thinking about you makes all the difference. I know how difficult it has been for me thinking about Cameron and his future, but it would be so much harder if he were truly suffering from pain constantly! It breaks my heart to think you and your daughter are both suffering. I hope being able to talk with us has made some small portion of it more bearable.
Love,
JoAnn