Not feeling any better this morning. But being tired isn't helping. My dog woke me up barking this morning. Hubby let him out to potty when he got up at 4AM and he won't come in and from time to time has a barking jag. I am sure my neighbors love me right now. I saw a show on Discovery Health about Proteus Syndrome. Funny thing, what I have NF is often referred to as "Elephant Man's Disease", but John Merrick had Proteus Syndrome not NF. The difference is with Proteus, you get bones that over grow. With NF you get tumors, skin tags, etc. What we have in common is that there is no treatment and no cure. I am so tired of having NF. Sometimes I just want to give up. But then I feel guilty because I know there are people who have a much harder time than I , but it just really hurts sometimes to know that people look at me differently because of the tumors. I would get rid of them if I could find a doctor who would do it. Don't they know that I don't want to look this way? I wish I could afford to just go to a plastic surgeon and tell him money is no object, you don't have to make me look pretty, I'm not looking for a miracle, just make me look less like a freak. I don't know if my running in this marathon will make any difference, but at least it is something. Well, today my goal is 13.1 miles, halfway. I want to do this, I need to do this, I have to do this. If I make it, I get to do a goal update and put my Run a marathon at 50%. So that has to be good, right?
Replies
Absolutely! Good luck on your run. Can\'t wait to hear about it!
I can only see the inside of you and it is beautiful, caring and determined. I like to think that the inside is much more important. If it isn\'t I am in a lot of trouble. When the witch finally leaves me, which I am sure will happen I would like to know that there would be someone out there who would be willing to love a 56 year old bald skinney guy with a heart condition and no money. You are loved and believe me that is the most important asset that anyone can have. I wish I had that. Take care my friend.
It must be very painful. People can be awfully cruel. You are taking good care of yourself and have accomplished so much, and that\'s what I see when I read your journal....a very strong, wise, witty woman.
People do look at the outside but the Lord looks on the inside. He loves you just the way you are. A thought for you have you thought to drink 1/2 to 1 teaspoon of baking soda a day? Makes the body\'s acidity level to neutralize and become normal. Or could the doctor inject something into the tumors to shrink them?
Don\'t you ever ever give up! Anyone that can run 13 miles on her way to win a marathon is a fantastic goal in my book! Blessing my friend!