Today is VHL Awareness day. I have lived with this damn chronic disease, a rare cancer, since it manifested itself in 1984, through a brain tumor. Eleven major surgeries later, I can say I'm alive because of educating myself about the disease, constant monitoring to stay on top of the myriad tests required to gauge the progression of tumors and cysts in the organs of my body, and by refusing to accept 'good enough,' going to where the knowledgeable doctors and surgeons are -- requiring all my surgeries to be preformed out of state.
As I write this, my arm is going numb and is hurting, so I can't stay on much longer. I miss you all -- miss being on-line and miss going to your blog sites. A new Mac laptop is winging its way to me as we speak (happy mother's day from the animals) and I should be able to write propped up in bed by Wed., which should solve the problem of getting back on line.
We are figuring out when to go to Emory to have tests. It's not my cancer, but related to the surgeries I've had, specifically scarring from spinal surgery, so they can't help me at NIH -- But, I have to have my level of pain brought down to tolerate a plane ride. The drug the internist gave me last week was beginning to work, but two days ago my right ankle and leg 'blew up.' I don't care to add living with an 'elephant leg' to my list of ailments, so I quit taking it -- probably compromised my system because I am down to a fourth of one kidney. Since everything seems to happen on the weekend, I'll call the Dr. Monday.
Excy diagnosed himself last night about 1 a.m. with that tick disease -- rocky mt. spotted tick disease? No 'ring' around a bite, but a rash on his leg that looked like prickly heat rash. Got the test and antibodiacs for today.
Geez, sorry to vent, folks, but this medical drama really must end soon. I'm damn sick of it and need a breather. I know that in my case it won't end but we are more than ready for some normal (for our family, anyway) down time.