Well, here I am posting to a blog I had totally forgotten about until recently....I want this to be a place where I can talk about my passion....scrapbooking. I hope to make this a place where you will want to come and see what I have been doing in my crafting. I will try and post at least weekly with all the things I have been doing for the week.
A little about myself...I am a wife and mother to 2 beautiful daughters, Kaitlyn who will be 14 and Brooke who is 12 1/2. I used to work in the education field with special needs kids. I was an educational assistant for 9 years. In 2006, I started having some health issues with my feet and was unable to continue to work. Also in 2006, my husband got real sick. He was diagnosed with a rare disease in 2007. He had been ill since 2003 and the doctor's could not find out what was wrong. They kept saying it was all due to stress, but we had no stressors back then. He was diagnosed with an adrenal mass and was set to have surgery in early 2006. Well the night before the surgery, the doctor called and cancelled it. She had been away doing research for a couple of months and when she saw some of the bloodwork my husband had had before she said she could not do the surgery to remove the mass. We had to travel about 4 hours to get to this hospital and were only about 20 minutes away when the doctor called. She wanted him to come on up and stay for a couple of days and do some more specialized testing. That was the first time we had heard of the disease which he would eventually be diagnosed with....Cushing's Disease. We came home and searched the internet for Cushing's Disease and everything started to click. All the symptoms he had been having finally starting making sense. We found a message board that was dedicated to Cushing's Disease patients and their families. That website saved my hubby's life. It lead us to go see a specialist on the west coast and then to another doctor who would eventually diagnose him in 2007. We then traveled to Houston, Texas where hubby would undergo brain surgery to try and cure him of this retched disease. Unfortunately, he did not get his cure in 2007. It then took until January 2009, to get to another doctor in Milwaukee, Wisconsin to do the surgery which from all of our research we thought would be the cure. Well here it is almost 2011 and now we are afraid the disease might be back again. The surgery he had in 2009 was a radical surgery to remove both adrenal glands so that the brain tumor which is still there cannot affect his body. We are afraid that all the adrenal cells were not removed and that they are growing again. Because my hubby has dealt with this disease for so long it has destroyed a lot of his muscle mass. He can barely walk now. He is 39 years old and is on total disability from Social Security... He basically traded one disease for the another. He now is steroid dependent for life and has Primary Adrenal Insufficiency or Addison's disease. I am unable to work because I need to be here to take care of him. I am his caregiver. And to top all of that off, my 12 year old daughter is showing signs of this same dammed disease. We have taken her to the local Children's hospital and the one in the next big city to no avail. We are having to fight the doctors all over again with her. So we are probably going to have to travel back to California to see the doctor who diagnosed my husband.
Sorry to ramble on, but I needed to get all of this off of my chest. It is something I have been living with since 2006 and it helps to write it all down. This is just a little insight into my life.
I will be posting about crafting probably later today or tomorrow...I hope you will stay and follow my journey with me......