I don't know exactly when it started, but in 2008 is when I found out my life had taken a major turn and I had not even noticed...

Well, I had noticed in a way. About a year before that I had started having some trouble with some of my exercises, climbing stairs had gotten harder and I started tripping and falling down even more often than usual. So I started exercising more, went on a stricter diet, and made sure I was getting enough sleep. As a NICU nurse who commuted long distances, and a single mom with a young child with Cystic Fibrosis I knew I tended to burn the candle at both ends and lead a high stress life. Then I started having trouble standing up out of a bathtub, and started avoiding my occasional bubble bath treats, and sticking with showers, blaming it on the long work hours. More falls, more trouble climbing stairs and standing up from low chairs. Finally, one of the babies I was taking care of was diagnosed with a rare vitamin absorption problem, leading to a vitamin deficiency that caused severe muscle weakness and I decided to go to the doctor for a check up. Maybe *I* needed some kind of vitamin or mineral I was missing out on that was causing this problem. In the back of my mind, I was a little scared of something like MS, but knew my symptoms did not really fit that disease. I had fallen down without reason so many times at work that I had had to get a drug test at one point. So in January 2008, I went to my doctor and hesitantly explained my vague symptoms. I was deeply blessed to have a doctor who had seen my disease before, as many patients go for years of tests and chasing diagnosis's before anyone thinks to test for Myositis, but my doctor immediately spotted the way I was moving, rising from chairs and the history of falling and sent me to a specialist for the proper testing. In February the muscle biopsies were done, and in March the results came back that I had a degenerative muscle disease. Because of the rarity of my disease, even with the biopsy there was some question. It was either Polymyositis or Inclusive Body Myositis, which are often confused on biopsy in the earlier stages of the disease, or under other conditions even later in the process. There are some differences between the two, the major immediate one being that Polymyositis is usually treatable with medications while IBM does not respond to any current medications long term. In March my biopsy site became badly infected and I had to quit working, and have never been able to go back. Once the infection had cleared up, after a wound vac, and a few months of antibiotics and special treatments, I was put on high dose steroids and special Rheumatoid Arthritis type meds (chemotherapy class meds) to try to stop my body from destroying my own muscle tissue. Over the next 5 years I took a variety of medications, had reactions to a few, had temporary responses to some, and slowly became weaker over time. Now in February 2014 use a wheeled walker or electric wheelchair to get around, and have had many, many falls, with a few semi-serious injuries. A few months ago I was sent to a new neurologist who did a new biopsy that showed I do have IBM, and the plan is to wean me off of the steroids and other unnecessary medications. This space is going to be about things we find to make life easier, from patient lifts to easy open door handles, both for me and for my daughter with CF. Also some of the thoughts about living with multiple handicaps in a family. My mom has MS, I have IBM, and my daughter has CF and we are a family unit with my step-dad. It did not start out this way. We formed this family unit to be a strong unit with multiple adults so there would always be people present to take care of my daughter after she was born with CF and some other special needs. But it has ended up being a blessing for all of us to be here for each other as things have progressed over the past 10 years and we have been able to support one another and work together. However, it does take a different approach sometimes to balance the needs of multiple medical challenges in one household. I hope our learning experiences can make it easier for someone else. I hope to find links and other blogs to post on the bottom of the page and put in lots of good info, and well as some fun stuff. We are a "going" type of family, and always seem to have 4 more projects ongoing then we can really do, so this may end up having quite a variety of stuff added to it (I hope!) by the time I get done.