I am trying desperately to keep up with posting, but it seems as if I only get on the computer three or four times a week. If it's a day that I am working, then usually, I have no voice left by the end of the day to do any dictating. As it stands now, because my voice continues to weaken, the more tired I get, the voice to text software has difficulty picking up my voice. I can see a noticeable difference at work between the morning and the afternoon, in the way the software works. And of course, the more mistakes the software makes, the more I need to go back and repeat myself, which results in me speaking more, which then makes my voice fainter, which then leads to more mistakes, blah, blah, blah.... At this point, since it is summer time and we work a reduced schedule, I'm only going into work two days a week and working from home one day. I am hoping to keep this schedule, come September, by utilizing one sick/vacation day a week and one short-term disability day a week. My goal at this point is to make it to January 1 and then reassess at that time. Even though the physical aspect of work is getting harder, I still think I can do it. Cognitively, there are no problems, which is the most frustrating part for me. I have so many ideas and so many things that I would like to do and implement, but I just don't have the strength and because I'm such a control freak, I would have great difficulty turning things over to someone else. In reality, I can and will continue to work, as long as my voice holds out.
Otherwise, the past month has been rather uneventful, except for my 44th birthday and a 3 night, 4 day trip to Dallas. I have mentioned previously that due to the setup of Tracey's parents shore house at LBI, a visit down there this summer has not been possible. With the tremendous heat wave we have experienced thus far, an escape down there for a few days would have been nice. Instead, like most of you, I been held up inside enjoying the A/C and fearing next month's electrical bill. Even being outside for a few minutes takes so much energy out of me and these days, I do not have a lot to spare. Besides being outside for Tracey's surprise birthday party in June, there has only been one other day where I spent an extended period of time outdoors. That was when we went to a surprise birthday party for one of Tracey's friend's child, that actually turned out to be for me. It seems that my coworkers had gathered together several months ago to
|My family, with my Pemberton family! Thanks Dr. Barbara for the pictures. |
The other major event this month was a Galactosemia conference held in Dallas, Texas last week, from July 19 to July 22. Galactosemia is a metabolic condition that my eldest daughter Sydney has, in which her body lacks the enzyme necessary to metabolize lactose and is more severe than just a simple lactose intolerance.. The Galactosemia conference is held every two years. Tracey and I had gone six years ago, when it was held in Philadelphia, nine months after Sydney was born. Since then, Tracey had gone to Chicago and Minnesota, respectively, every two years along with my sister to attend the conference. This year, we went as a family, with my sister once again included for assistance and support. The focus of this trip was not so much for the information that we would get, but instead to give Sydney the opportunity to meet and interact with other children who share the same metabolic condition. We paid for the conference, which included child care, and booked our hotel and plane tickets back in April. Although I experienced continuous anxiety from that point, the anxiety really began to increase about a week before the trip. How was I going to get on and off the airplane? How would I get in and out of my seat on the plane? What if I had to go to the bathroom on the airplane? How would I get to the bathroom or shower in the hotel? How would I get in and out of bed? What if I fall? What about food, since I'm now on a gluten-free diet? And worst of all, what would happen if my stomach issues should reappear? These were just some of the questions that went through my mind routinely. I had to consistently remind myself that it was just four days and I could do it, and more importantly, I was doing it for Sydney.
|Sydney enjoying dessert!|
The other difficulty that I had was that for the first 24 hours or so I had little to no strength. I assume that getting up at 5 AM to get to the airport, transferring on and off the plane, the flight itself (a little over three hours) and getting to the hotel was a little too strenuous for me. From Thursday afternoon through Friday, I could barely transfer from my wheelchair. The minimal strength that I typically have in my legs was now zero. For the first 24 hours or so, the only way I could transfer was to have Tracey stand me up, angle my body in which direction it needed to go, and give me a push, whether it be onto the bed, the toilet, or back into my wheelchair. Unfortunately, this created a whiplash effect to my neck which contributed to the pain throughout the trip. Really, there was no other way to do it. Throughout the trip, we were experimenting with different placements of the wheelchair to try and make transfers easier. By 1 PM on Sunday, about two hours before leaving to go to the airport to come home, we finally figured out the correct positioning of the wheelchair to ease transfers. Better late than never. At least I did not fall during the trip, although I came close a couple times. Tracey did another outstanding job getting us all their and getting us home in one piece.