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September 20 Shitty update!Hi everyone, thanks for thinking about me. I know I have been kinda offish with all of my friends,I don't mean to be, it's just everytime I turn around it is somthing else, and I end up just sticking to myself. I'm sorry. It is just my way of kinda dealing with crap. I always think about you guys though....So here is my shitty update....After all these Dr. appts. I go in on thursday to be told the masses on my lower spine are not tumors..yet......(are ya thinkin' bout that one??) ya me too....uhmmm, ok not YET? Nah...just fibromas..that have built up on my..(are ya ready) SCIATIC nerve.... so all the back pain, burning in my legs and the random falling on my ass from losing feeling in my legs is totally normal!!??? Ok moving on so as for the not YET junk...the only treatment is pain meds and monitoring....monitoring them till they become tumors...for which the couldn't operate on anyways because of all the nerves they would come in contact with and send into a frenzy and then i would end up with 10 tumors in it's place..yeehaw! For those who don't know NF simple term of it would be.......TRUE TO THE SLOGAN.... getting on my nerves....The defect in my cromosone 17 is that my body produces to much protien and OVER REPAIRS nerves and nerve endings...so pretty much what happens is where ever I have a nerve in my body(which is everywhere) If a nerve somwhere gets kinda stressed, it will repair itself...but it won't stop....it will keep feeding into it which causes it to end up looking like a split hair but those split ends over repair and they grow spilt ends and those split ends grow split ends...and so on...and so on. Till ya end up with a tumor..somwhere on your body....now trying to remove that tumor you would be agitating nerves around it which would cause THOSE nerves to over repair..blah blah blah...... now think of everywhere in your body you have nerves....brain, spine ,finger, toes ,eyes ,ears, EVERYWHERE...... SOoooo.........so the tumors are left alone because they really can't be operated on until they actually get so big and they are causing problems to neighboring organs, or have attached themselves to your heart,or lungs..or wherever they want.....So that is NF........ and to continue with my update..........pain meds and my ass cheek randomly on fire for now.. I'm good.....Got to go to Cardioligist in Oct. and get to go see an Internist!! (kinda creepy name Internist, makes ya think a pap aint all that bad..lol) Gonna check my organs...... Seriously thinking bout donating them...if they are in good condition I think I will donate them . Been checking out Live donation..seems pretty amazing that people are doing this....and being in me they will only get sick,so if they can be used.. go for it I think......OK gonna go......let me know what ya think. been rambling abit, I'm tired will definitly check back .......talk to you all soon. Tammy
P.S. Min, I miss ya dearly. Muah. September 08 A picture tells us alot!!!!!hello everyone... sorry we havent updated till now..but things have been busy and well we didnt have much to tell you all till now.
Tammy and I did not attened the NF BBQ in july..but wanted to..
We have tried to contact the NF site and the staff there as Tammys work wanted to have a fundraiser for NF at work..but had not got No call back..were at loss for words , this fundraiser would have brought a few dollars to the reserch for NF.
Anyways......Tammy has had some testing done as she has what i call the inside NF..some people have the outside where the tumors are visiable ,,,Tammys you can not see.
So recently Tammy had a CAT SCAN done..a full body one..this was done last week..well two days after that scan was done they were calling Tammy back in for more pictures to be done they had found a MASS in her lower back.
They needed her to come back for monday this week..(yes it was a holiday) but they really needed to have more pictures done they found something.!!!
So Now Tammy has to sit and wait till thursday next week for the results..... I dont have NF and it is driving me crazy having to wait for the news..can you imagin what Tammy is feeling and going through...
This mass is on the nerves in her spine the lower back part..
So the pain and numbness can now be explained some what.
With not knowing a hole hell of alot about NF..what does that mean for Tammy?
Surgery..if not does that mean at some point in her life the tumors will affect her ability to walk?
Well anyways we will update you all when we get the results next week..in the mean time PRAY alot for Tammy .
And if anyone from the NF site reads this could you please call us...
June 09 Come One Come All!!!!! Thers are BBQ Happening!!!!
TEADDY BEAR PICNIC  
JULY 16th 2006 The NFSO is hosting a Teddy Bear Picnic. Come join us for a day of fun and games and great bbq'd food. 
If you interested in joining Tammy and I and our familys at the picnic email us here or leave a blog . We will email you back with the WHERE? WHEN? TIME? So Please come and join us we would love to see you all there.
You can link on to the NFSO site from there.I know that we have had some people ask for more information on NF.For either themselves or a family member.I want everyone to know that we are here to support you and help you to find the information you need..But we are not your Doctor.
When we have information we will post it on here so keep coming by and checking in..Leave us a comment on how you are doing. 
And again Thank you all for your support now and in the future.
Neurofibromatosis Society of Ontario 180 Circle Lake Road, North Bay Ontario, P1A 3T2
Call Toll Free 1-866-THE -NFSO (843-6376) Making a wish for Better Days May 04 MAY IS NF AWARENESS MONTH!!!!
Thank you to Dave for this Beautiful picture he made for Tammys space...http://spaces.msn.com/davemm/ Go to his space and take a look at the other work he has done. Dave posted a blog for NF..Thank you Dave for your support.. We attended a NF meeting on sunday and met alot of wonderful people. They called the meeting the May Tea party. We had a great time meeting everyone,getting alot more information and connecting with people who have NF or Have lost a family member to NF..and let me say it was sad to hear that someone had lost there fight with NF..it also makes me scared for my sister.I dont want to lose her. It may not ever happen and she could live a long and wonderful life..but there is still the possiablility for it..we met a lady there on sunday who lost her brother five years ago to NF but her mother who is turning 90 something is still fighting it. So there is hope ..but we need help to find a cure. Now i know that most of our friends on MSN SPACES are from afar..and cannot attend a Tea Party for NF..but if you would like to help with a donation we would so very much appreciate it. You can leave us a blog and we will send you out the informationto whom you can send the donation to..and also for you to enjoy a special cup a tea we will send along tea.!! ALSO!!!! The NFSO which is the site for NF here in ontario is having a TEDDYBEAR PICNIC
Thanks to all who has helped Tammy and i out with amazing pitures for the site.
Your friendship and time means so much to us..thank you all!!!! 
March 16 Welcome to this wonderful spaceI need to thank everyone that has come by and checked out our space...THANK YOU!!!.I would also like to thank all the wonderfull people that have made BEAUTIFUL things for us.We do try to post them here.So A big THANK YOU ..to you all...Hotelwaitress,Tigger,BigMomma,and anyone else i may have forgotten...we love the work you all do..THANK YOU!! I created this space for my sister Tammy.  
As you look around our site.Please be kind and remember this is a real fight for her life. tammy will be here to leave blogs about her day and her feelings and her everyday frustrations with this disease. And if anyone out here knows of or has this also..please let us know...
I love my sister very much,there is no one like her ,she is a bright and funny and loving .She is just a really great person . I want people to see this and know that it is out there ,Most of our information comes from the States because there isnt enough AWARENESS here in Canada. Doctors are just being to understand this also. There is 1 out of 3000 births in which a child is born with NF,And is never diagnosed , due to lack of information,research,and awarness. This is what the site is for. But i will let Tammy tell you all her story . |
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