December 18th - We're back on track

Thanks to everyone that has sent us prayers, food and support during the past two weeks.


For those that don't know, I was in the hospital for the first week of December. I was having what the doctors think was a reaction to the ALS medication Rilutek. I was experiencing violent headaches and lost function of my right leg. After I was discharged on Monday, December 10th (Darrin and I's second wedding anniversary), we went home to realize that we were in no way prepared for my needs. Tuesday night I went back to the hospital with the worst headache so far. They were able give me enough pain medication to get me out of the hospital and to the ALS clinic to see Dr. Bertorini, who I hadn't seen while I was in the hospital because he treats out of Methodist hospital. NOTHING was going to keep me from seeing him that day. Every doctor we saw at Baptist, which included the doctor that originally diagnosed me, questioned why I wasn't being treated by Bertorini??? Urgh, I'll save everyone from my personal beliefs on managed care. Bertorini adjusted the meds the hospital doctors had changed, but failed to send me home with RX's for; scheduled an MRI at the hospital (where I had been staying for 6 days and nobody ordered one); fitted me for a power wheelchair; ordered a hospital bed and a lift.

After all that, on Thursday function slowly came back to my right leg. Yippeeee! We have been quickly trying to get things to a more manageable lifestyle. We've hired an amazing lady, Shirley, who will be staying with me and Deke during the day. She'll provide what's called companion care, and which I refer to as another me, i.e. cooks, cleans, runs errands, will take me to the doctor and help care for Deke. Already she's been a huge benefit and really answered our prayers, as well as hers. She had been working for a company providing these services to multiple clients, throughout the city. She had wanted one family, close to home, full-time. Seems like a perfect fit! Of course, Deke has worked his charm on her.

Thanks again everyone!