After nine months of job hunting, Steve has finally landed himself a regional sales management position in a start-up urology company. I must say a big thank you to all of you who have kept him in your prayers and passed on resumes for him. It certainly is nice to be on a payroll again. The best news of all is that he doesn't need to travel much. After 18 months in his last position of traveling continuously, it's nice not to have to find rides for the kids and myself.
My Kindle has just been updated with a free application which has increased the font size, and now I am able to read it again and not just listen. Yeah! It's also been a nice bonus that the kids are back in school. Tyler is a sophomore and Alyssa is in 2nd grade and they are both doing well.
Medically, since my last post, I've had two root canals, two crowns, and still require more dental treatment but can't afford it at the present time. My dentist told me that the reason I'm having such bad decay is because of the brain stem radiation back in October 2006. I was never warned of this being a side effect.
After returning home from the hospital with the kidney/blood infection, I received antibiotics through August 9 through a pic line. About a week after the pic line was removed, I started feeling as if I was getting another infection. I had low-grade temperatures and felt flu-like and very achy. I had blood work done. My white count was elevated but they could not find a source for the infection so they decided to just watch it. This continued and yet the achiness has increased in intensity, I'm very fatigued, and I sleep 10-12 hours per night. Since coming home I've lost another 10 lbs and have not been able to gain it back. The doctors were still perplexed as the blood work had not pointed to a source of infection. So I went to see an infectious disease doctor in mid-September, and he seemed to feel that I had Lupus or a condition called Porphyria. My symptoms at this point were frequent and painful blisters on my hands and feet, and my skin discoloration had worsened on my arm.
Later that day I saw a dermatologist who saw the blisters. Dr. Brieva did two skin biopsies to determine what type of condition it could be. He felt that my skin discoloration and thinness was not just related to steroid use in the past and that there was some other factor. About 10 days later, the dermatologist called with the skin biopsy results and said I have Porphyria and ordered lab work and urine tests to determine which of the eight types I have. As I have no history that I know of in the family, he feels it probably started as a result of long-term antibiotic use over this past 10 months.
Porphyria is a rare disease of the blood that causes fatigue, weight loss, low-grade temperature, neuropathy (nerve pain), blistering, skin pigmentation change, nausea, etc. -- everything I have. My pain seems to have settled in my upper back and upper arm. I'm still waiting for results from the Mayo Clinic lab as to which type of Porphyria I have.
Other than all this nonsense, I truly enjoyed the summer and it was nice to finally have a summer this year (last year was cold, crappy, and I felt horrible). Hard to believe I've aged so much but I even had my 30th high school reunion on September 18th.
I recently have seen the eye doctor, Dr. Cohen. Again, he said not much changed but I still see crappy. We'll be following up with infectious disease and whoever follows Porphyria. I never had a chance to start chemo treatments for my eye or kidney with all that's happened in the last year. The good news is my internist said he phoned in a strong narcotic for me. Looking forward to hopefully finding some better relief today for my back. The pain is draining my body of energy.
It's almost full circle now. My brother passed away October 22nd of 2009 and I remember blogging from the lobby of Northwestern Memorial Hospital. With everything happening this past year, I realized I never fully grieved. He comes to mind often and I really miss him.
On a brighter note, Alyssa is also a year older, turning eight this Saturday, and we will be hosting a spa party with 20 of her closest friends. She's so excited. It will be quite fun. Ooh la la!
