Day 194

Even though I could not go to Mayo this week and I could not go to our class reunion, I really enjoyed being able to follow blow by blow on bonfyre! Everyone looks so great and a good time was had by all as usual, we always knew how to have a good time. If you are reading this and you read my reason for the blog then you know this came to life because my baby boy gave his birthday wish for my healing and he still asks me if I am healed yet and why not. I do know God will heal me, but in His time and when it will bring the most glory to His name. I am scarred, my body has been through so much and just when I think I can't take anymore I do. Gods word says He will not give us beyond what we can bear and so far in life I have found that to be true. I hope I can get some sleep tonight. I almost forget my body is in a constant state of pain sometimes because my fentanyl patch helps. A few days after the first day they put me on it, I was pain free for the first time in years. Several times I have tried to remove it thinking I must be better and realized, no, it is just doing its job. I will be so glad when I can get rid of my central line and all of my medications but until then I thank God that I have them to help me cope with this terrible debilitating disease. It is so rare I am having a very hard time finding someone who knows how to treat it. I tell medical professionals my diagnosis and some tell me I am just stringing words together but I have not put words I don't know together since I was young and imagined my world wide conglomerate Nowscow & Chilton. It is so rare, the rare disease fund has never heard of it. I guess that has always been me, one of a kind in every way. Teachers said I marched to the beat of my own drum and apparently   my body does too. Here is one more day of waiting. Thanks for taking this journey with me!