Journal Entry for February 17, 2008
February 17, 2008 1:26am
just got results from follow up chest CT scan and everything is stable, no changes. Need to do another in a year and if no changes then, …
leogirl19
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About Me
leogirl19
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About Me
I am a single, vegetarian leo who works as an esthetician at a resort spa. I have NF1 and diabetes insipidus. I have a cat that I adopted from the humane society. Her name is Zuli. I still love the music from the 80's and knit when I have the time.
I am a single, vegetarian leo who works as an esthetician at a resort spa. I have NF1 and diabetes insipidus. I have a cat that I adopted from the humane society. Her name is Zuli. I still love the music from the 80's and knit when I have the time.
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Hi You sound like an amazing person. Your cat's name is cool. How did you come up with hit... My kids named our dog, Paris....Before her we had a Punky.....NF really stinks.... But thankfully we all have each other on the DS board for support....
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Hope your feeling better..Happy Easter!!!
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Havent Heard from you in awhile...Hope everything is fine...Hope You Have a Great Weekend....
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Support Groups
Close Neurofibromatosis
I was born with NF1 and had my first major surgery when I was 7. They took a lime sized tumor that was pressing against my right lung and growing towards my spine. I developed scoliosis and have the Harrington rods and spinal fusion. I have numerous plexiform fibromas on the nerves of my spine and am dependant on pain killers to just get by.
Treatments
- Neurontin Working / Worked
- It made a world of difference for me. I had unbearable pain running from my left buttock down to my kneepit and the side of my calf to my foot. I could barely walk and if I sneezed I thought I was going to pass out. The Neurontin allows me to walk and get through my day. I still cannot have any pressure put on my lower back (still painful) but I could not get by without it.
Close Scoliosis
wore something called Milwaukee brace for 23 hours a day for over a year, it didn't help due to extra bend in ribs because of Neurofibromatosis. I have the Harrington rods and they put pieces of hipbone between the disks for fusion. I have terrible pain in my right shoulderblade if I overuse, which happens alot because as an esthetician I do body treatments and waxing for clients.
Treatments
- Brace Working / Worked
- Harrington Rods Working / Worked
