So I know some people stay away from caffeine when they have headaches or they get headaches from to much caffeine. With me it seems to help my headaches. In fact Excedrin migraine has caffeine in it, That's what I usually take unless its late at night and I don't want to be kept up from the caffeine so Ill take something else.
I'm curious about the rest of you, do you stay away from coffee/ caffeine?
Wednesday, July 27, 2011
Tuesday, July 26, 2011
Nf and the backstreet boys
July 8th my dream came true of 14 years to meet The Backstreet Boys! It was a 4 hour drive to Tacoma to see the NKOTBSB concert but it was all worth it. I got to meet all the guys and give them NF bracelets and then do a tour backstage with Nick and the rest of the fanclub. Once the show started A.J sported his NF bracelet for the entire concert! It was an amazing experience and a great way to spread awareness!
Headaches and bumps
So for a while I had been getting headaches for frequently and the ibuprofen just was';t cutting it anymore, so I switched to Excedrin migraine. Two of those seem to do the trick but I'm wondering what over the counter pain killer do you guys take for your NF related headaches?
Also it seems lately I've been getting more of the little fibroma's just under the surface of the skin, and a little for freckling on my arms. Its rather annoying considering growing up it all pretty much stayed the same. I'm wondering if it continues what will I look like in 10 years? I know either way my friends and family will love me, so bring on the spots!
Also it seems lately I've been getting more of the little fibroma's just under the surface of the skin, and a little for freckling on my arms. Its rather annoying considering growing up it all pretty much stayed the same. I'm wondering if it continues what will I look like in 10 years? I know either way my friends and family will love me, so bring on the spots!
Tuesday, April 12, 2011
Neurpsergoen update
So it turns out my new doctor actually helped clone the NF gene, Also my tumor hasn't grown and he isn't sure why they said it had. So I just need to get another MRI in a year. This doctor will still be there next year so I don't need to worry about finding a new doctor. So good news all around. I gave the doctor an NF bracelet to!
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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