Tuesday, March 22, 2011
Neurosurgeon tomorrow
Tomorrow Ill be heading up to Ohsu to see the Neurosurgeon and see what he wants to do about the Tumor. A little nervous getting up a 6:00am and I'm not a morning person. Ill keep you updated and Ill be giving the doctor a NF bracelet
Saturday, March 19, 2011
Friday, March 18, 2011
Time are tough
Not being able to work full time is really putting a strain on me that's for sure. Trying to find ways to make some extra cash. Ive got books for sale as well as wedding rings and an exercise bike. Hopefully I can sell those.
Tuesday, March 8, 2011
Newsletter
Working on Edition #3. I think it's important to keep this newsletter and video series going. Sure I could very well put everything into a book but they way I look at is not everyone can afford to purchase it. Times are hard now so this newsletter will always be free and of course the video series as well. As long as people have stories to share I'll continue putting things together, even if it's just my story. I really want to help spread awareness the best that I can. Website check, video series check, facebook page check, newsletter check!
Monday, March 7, 2011
The Nf Diaries
Welcome! I've already started a montly newsletter and video series for others to share their stories about NF and now I wanted to start a blog to keep everyone updated on my status with NF. My story is Episode 1 of the NF diaries on youtube www.youtube.com/thenfdiaries . There is more to my story then what I put into the video and even more then what was put into the newsletter . ( to subscribe email TheNfDiaries@hotmail.com .)
Growing up NF didn't affect me much, not that I knew of then anyways. I remember complaining that my back bothered me. I found out that I had a slight curve and was sent to physical therapy for a short time. After that because I started to feel slight improvement my doctor assumed it was fixed and dropped the therapy. I found out years later that a curved spine is part of NF and my back still bothers me to this day.
I also get frequent headaches that is also part of NF. Not to mention high pulse rate. My old doctor actually accused me of being on drugs for that and demanded a drug test. Which I had to pay out of pocket for to prove I wasn't on drugs.
It just amazes me how many doctors don't know anything about NF. There has been several things written off as nothing or thought to be something else that where all related to NF. I recommend looking for a doctor in internal medicine. They are in no way experts but they do know more then your regular MD.
Later thins month Ill be going up to OHSU to see if they want to do anything about my tumor that has grown. They are the best doctors here is Oregon and if they are the ones to go to if I need something done with it. Ill be sure to keep you all updated as things progress and maybe even do a video about it. In the mean time be on the look out for more video's on youtube and a newsletter every month.
Peace love and applesauce
Crystal
Growing up NF didn't affect me much, not that I knew of then anyways. I remember complaining that my back bothered me. I found out that I had a slight curve and was sent to physical therapy for a short time. After that because I started to feel slight improvement my doctor assumed it was fixed and dropped the therapy. I found out years later that a curved spine is part of NF and my back still bothers me to this day.
I also get frequent headaches that is also part of NF. Not to mention high pulse rate. My old doctor actually accused me of being on drugs for that and demanded a drug test. Which I had to pay out of pocket for to prove I wasn't on drugs.
It just amazes me how many doctors don't know anything about NF. There has been several things written off as nothing or thought to be something else that where all related to NF. I recommend looking for a doctor in internal medicine. They are in no way experts but they do know more then your regular MD.
Later thins month Ill be going up to OHSU to see if they want to do anything about my tumor that has grown. They are the best doctors here is Oregon and if they are the ones to go to if I need something done with it. Ill be sure to keep you all updated as things progress and maybe even do a video about it. In the mean time be on the look out for more video's on youtube and a newsletter every month.
Peace love and applesauce
Crystal
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