Amanda had a follow-up at UCSF with the medical team that is following the condition on her scalp (Cutis Verticis Gyrata). The appointment went pretty well for the most part. A new doctor joined the team so we went backwards and discussed all the tests over the last few years to bring her up to date. I did find it interesting that the new doctor comes from a background in alternative medicine. I was glad to see the combination of medical styles.
In the course of their discussion, it was suggested that it was time for a follow-up with her Neurologist. The growth and swelling were actually down from previous visits, but since she had two odd episodes in November and early January that included dizziness, headaches, and hair loss, the team felt it should be re-discussed/reviewed.
The team has a tendency to talk/theorize amongst themselves while standing in the room with us. The lead doctor explained to the new team member that it might also be helpful to go back and check to see if anything new has been published on the condition since they last looked, that “this is just so rare, we just don’t know.” Oddly enough, I found the fact that they were honest and comfortable enough to admit that they do not know what to expect refreshing after seeing so many doctors that tried to brush it off mainly because they had no idea where to start.
We realized early on that we were dealing with the unknown. With only six documented cases available for their comparison a few years ago, we just have to trust in the fact that these doctors are rated among the best in the world and will do all that they can. It is hard sometimes not knowing what to expect, what the possible outcomes may be etc.
Tuesday, February 19, 2008
Tuesday, February 12, 2008
New Year, New Changes
2008 started with a bang, bringing major changes to our household. With the new changes came new decisions.
After 23 years with my company, my position was eliminated. My last day was January 31.
I started working when I was 16. I am unemployed for the first time in my life, and now need to decide what I want to do next. The travel industry has been in turmoil for years and clearly does not offer any job security, so I definitely will be looking for something else.
With all the stress that my family and I have endured the last two years, I can’t help but consider the value of choosing a less stressful career. The strain from my job in December and January definitely caused pain in my right kidney, which for me proves that stress does advance the disease. I am assuming that what I felt was the cluster of cysts in that kidney. I can’t seem to get an appointment with the Nephrologist that I was referred to, so I guess I will be going back to my primary care physician for a basic physical and insisting that he check my renal function at the same time. If all is ok, I will wait for the Nephrologist that he recommended, otherwise, I will insist on someone else.
After 23 years with my company, my position was eliminated. My last day was January 31.
I started working when I was 16. I am unemployed for the first time in my life, and now need to decide what I want to do next. The travel industry has been in turmoil for years and clearly does not offer any job security, so I definitely will be looking for something else.
With all the stress that my family and I have endured the last two years, I can’t help but consider the value of choosing a less stressful career. The strain from my job in December and January definitely caused pain in my right kidney, which for me proves that stress does advance the disease. I am assuming that what I felt was the cluster of cysts in that kidney. I can’t seem to get an appointment with the Nephrologist that I was referred to, so I guess I will be going back to my primary care physician for a basic physical and insisting that he check my renal function at the same time. If all is ok, I will wait for the Nephrologist that he recommended, otherwise, I will insist on someone else.
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