ShapeFit.com

[Hope4Life]

I’m starting just a basic journal for those of you who would like to hear of updates on the basics, health wise and ill put in some workout progress as things go. Not every day but here and there when things go well or maybe not so well. I’m also including the bio from my donation site with the link. Any support with that or just basic awareness of the condition is good enough to get the word out. You can also check out ctf.org if youd like any more info. My disorder is NF2.

This is also why I’m here, to learn what I can, get any advice and just try to get back into the best health I can accomplish. So as for my advice to anyone who lacks motivation or would like a friendly kick in the butt Be thankful for the life you have, the things you can do, the effort you can put into something and the ability you have to do these things easily. Because there is always someone out there who has it worse then you and would chop off a finger just to be able to do half the things you can. Personally? It’s having ambitions for life that will get you places. It’s what’s keeping me going. “Hope” is my word….its what got me here. here is my story so far and ill update as I go…..

To Amber's family, friends and fellow supporters,

Just two months shy of her 17th birthday, Amber was diagnosed with a genetic disorder known as Neurofibromatosis Type 2 (NF2) in September of 2003. It’s a genetic disorder that causes tumors to form throughout the central nervous system and other random areas all over the body. The onset of this disorder was apparent at birth with her right eye being undeveloped, but with no known case of NF in her family, it was not evident until later when her hearing started descending in early Jan 2003.

Her first life changing brain surgery awaited four months after she was diagnosed. It cost her all of her hearing, the movement on the right side of her face, total blindness in her right eye, tunnel vision in the left, balance impairment and slight taste deficiency. With neither knowledge of NF2 nor many friends with NF, the first two years were the hardest.

“I basically thought that I was going to die and I remember crying myself to sleep for a straight month after I found out what I had. I had no will power to live and try anymore and I shut out a lot of people and didn’t want to see anyone or go anywhere because of how I looked and the fact I was deaf,” said Amber, who’s now 21 and will be 22 in late November this year.

Despite having to be home schooled her last two years of high school and undergoing at least three surgeries, she graduated.

”I told myself one thing and that was that I was going to finish what I started and I will finish with my class and that’s what I did. It wasn’t easy and I missed out on a lot of growing-up experiences like learning to drive, getting your first job, first car, applying for colleges, prom, high school parties; you know, those normal things every kid should get to do. I had to grow up before everyone else,” she said.

After a year and another couple of surgeries, Amber was improving. “I got sick of crying that pretty much sums it up,” she said, laughing. “I got sick of feeling sorry for myself and sick of being home all the time and just sick of being, well, sick. I realized life does go on and its about time I wake up and try something. I applied for college online and after that, life slowly followed and caught back up with me.”

She now has an ABI (auditory brainstem implant) that allows her to hear sounds, but note: they aren’t normal. “A lot of people who have it would say its just a bunch of beeping, but after three years or working with it, I like to call it tones and pitches like a keyboard. A knock sounds like a knock, a phone sounds like a phone, a bird sounds like, a bird with a very sore throat. People don’t sound the same, but it helps a LOT with lip reading and I’m getting better at it as I work with it. Oh! And thanks to my boyfriend Paul, my iPod is loaded with music! And yes ill admit, I’m one of those techno freaks who loves a good beat!” says Amber who laughs at her last comment.

She recently just had five surgeries in the past 8 months as well. “After the first three or four in my life I got used to having surgeries every year or few months but this past ordeal….enough is enough! I’m done! I can’t continue down this road so next up are drug trials and a cure needs to be found! There’s only so much a girl can take on.”

Amber, her mother and a few fellow NF2ers went to the Disney marathon in January of 2008 and after that experience she set a goal.

“I told my mom and my friends that I am sooooo doing this next year! And here I am and that’s what I’m fundraising for.”

“Ambers one of those people who takes things in easy and pushes it aside like its no big thing. She can always bring a smile to someone’s face or make you laugh and is easy to get along with. She knows she doesn’t have the best of everything but she can make the most of what she has and can see the bright side of any situation. Her ability to deal with surgery after surgery (and counting….) is one of the things that truly show’s her strength.” says her mother, Carol Duby, who’s also walking the half with her daughter.

Her cousin & friend Ashlynn Redburn is also walking along side her. “I've known Amber since day one when the effects of NF first started to appear. I watched her struggle through all the losses she had to endure, due to surgeries and time away from school, family and friends. But she has never given up, she pushes herself to be something more than what she has been told her limits are or will one day be. Every surgery is a set back and she has to start over a little more each time. Her persistence and drive to get back to doing things on her own has been an inspiration and motivation for me (and others) to get out there and do it with her,” states Ashlynn, who helps with Ambers travels due to the fact Amber can’t drive.

The Walt Disney World ½ marathon will be the first event these women will participate in. They are walking for research, for awareness and most of all, for a cure to help those with NF. They are training, fundraising, and spreading the word. You can help them find a cure for NF by donating to this cause as they walk for research! Any contribution is very much appreciated.


As a final note for this entry I’m NO different then I once was before all this happen, except, yes im still deaf and face those other things still. But after four and a half years with it. I just learned how to deal. Its normal for me even tho it can shock others. I just learned how to laugh at my lifes reality's and make the best of it. If anyone has any questions about anything, feel free to ask. Nothing dealing with this is to personal and I became an open book about it so if theres something youd like to know, please ask away. im not looking for pitty in anyway….i personally hate it lol since im not any different really. But now you guys can understand where im coming from and what im working towards. There are worse things in life then having to having a boring job or gaining a few pounds.

The donation site
http://www.active.com/donate/nfdisney2009/The-A-Team

Amber
"If your actions inspire others to dream more, learn more, do more and become more, you are a leader" –John Adams

[cassiegose]

Wow! What a story!

I'm glad you started this journal Amber! Your story is quite amazing. I was impressed by your postive attitude and strength before... Now I'm blown away by it. You are a very inspirational young lady! I can't imagine how hard this journey has been for you and how much you've had to endure as a result.

Keep up the hard work and please do keep us posted on your progress and your health!

Thank you for being such an inspiration Amber!

Cassie

A couple more quotes for you. :)

"Tough times never last, but tough people do."
~Dr. Robert Schuller~

"I am only one, but I am one.
I cannot do everything, but I can do something.
And because I cannot do everything,
I will not refuse to do the something that I can do.
What I can do, I should do.
And what I should do, I will do."
~Edward Everett Hale~

"Vision is not enough,
It must be combined with venture.
It is not enough to stare up the steps,
We must step up the stairs."
~Vaclav Havel~

[Hope4Life]

those are great cassie! the second one explains it in a nut shell for me but add the fact "you tell me i cant or wont beable to do something....ill try and do it anyways" but again...ill be doing it a lil differently lol

that whole story explains it mainly. i just got sick of crying. and frankly, its hard to make me cry now unless its huge like a close realative or friend passed away. then again...the reactions on tv that ppl make to someone elses death or a death of an animal will get me REAL close. but yeah. the other one i like that relates to my word...."hope is a good thing, maybe the best of things and no good thing ever dies" -Tim Robinson

i will have to get some more pics loaded. i have a chinese symbol for HOPE on my shoulder blade and working to get another soon.

so far my workouts are going well. but heres a question for all of you.... when i do gym days i do 20-30 minutes of cardio with it. two machines out of the bike, ellipticals and treadmill. i pick two for the day. is it better to do cardio before or after the weight machines?

and for these weight machines that range in full body from legs to abs to arms (and back)...is it better to work on one area at a time then go to the next. ie work out with the arm machines....then leg machines then finish with abs or whatever order....or will i benifit more if i did lets say...a leg machine...arm machine...leg machine...abs....arm machine...leg machine and so on? wasnt sure if theres a propper order you should try to concentrate on or if its better to do it randomly...

Amber

[cassiegose]

I like that quote too! :)

I bet your tattoo is very cool! What are you going to get next?

For cardio and weights you actually might be better doing them on separate days. Ive found that by having designated "weight" and "cardio" days I actually get a better workout as I'm able to give 100% to either my weights or my cardio. When you do cardio first your weight routine is going to suffer a bit and when you do weights first your cardio is going to suffer a bit giving you a mediocr workout either way.

For weight workout... To be honest I've never been a fan of those machines. They can be great for a beginners who are still learning proper form but i think alot of times people don't get as much out of the workout when using machines (as opposed to free weights or body weight) as they sometimes don't challenge you enough as other exercises might. Not saying this is the case with you Amber... but that is what I've found when watching/helping people at my local gym. Have you ever tried body weight (lunges, squats, pushups, pullups, dips, etc) or free weight exercises when lifting?

For your routine... I usually do a full body workout and start with larger muscles and work my way to the smaller ones. Sooo.. I'll usually do a full body workout alternating legs and back first then alternating chest and arms last (2 sets each of legs and back and 1 set each of chest and arms). I've read of many different ways to alternate sets and exercises and I've found that it makes sense to do the larger muscles first and smaller last. Thats just my opinion though. I'm sure there are others who do this differently and would offer different advice. :)

Hope this helps!

Cassie

[Boss Man]

[Hope4Life]

ok... here we go with this reply lol

cassie- thanks a lot for that!

firstly the tattoo i want (my boyfriend paul is drawing it for me he is REALLY good and he also has NF....NF1, a more common form but his is really mild so i dont even notice. NF2 is more rare) this next one is gonna go on my lower back, sorta on my hip. (not across the bottom lol) i didnt want my tattoos to be in a spot where i could possibly have surgery at and my spine is a BIG deal cus theres like over 15 tumors along it. they are small but there is a chance later i could have a OP there. lets hope not this one is going to incorprite a lot of things dealing with my condtion and things in life. its a butterfly over a flower type stem. so instead of a flower at the top...you will see a butterfly. i designed it but paul is drawing it. the stem is having the letters NF hidden in it bc you really cant fully tell i have it unless you ask or look very closly. the butterfly...my mom and nana loved them. my nana passed away seven years ago before i even knew i had NF2. they are also deaf. they also signify like transformation and just delicate and beautiful and graceful. ive always been looked at as the sweet and innocent person. friends with everyone. there will also be a design in its wing. its gonna be like puzzle pieces. the slogan for CTF is solve the NF puzzle. its also something paul wants to do for his NF tattoo lol altho im first and i jsut thought it was a cool idea and needed to fill the butterflys wing. once i can get a pic of it drawn i should post it. but hoping to get it in a few weeks.

does anyone know about tattooing and working out? i know you cant swim for like a week or two or be in the sun to long since it needs to heal. but what about working out? you sweat alot and as im told...you should take a break from that also so the sweat doesnt mess up/smear the tat...anyone heard of this?

oooook! as for workouts the thory makes sense but im trying to figure out why its not great to do both weights and cardio? how will it hurt the other by doing the other before it? or vice versa?

and here is where the 'difficulties'comes in....since i dont drive i cant get to and from the gym on my own. so i try to make use of my time as much as possible while being there for like two hours. i could shave a half hour if nessesary but point being, im there a while so i do more. i do have dumbbells at home and a medicine ball and a balance ball and ankle weights. i do also have a day or two during the week i do strength training at home. but part of the machine use is helpful bc they are stable objects. things i can center my weight off of with a better controled movement. free weights, although i can lift things fine and my dumbbells are 8-10 pounds for big muscles in arms but only like five for the wrist curls . sometimes if i dont have stable footing or a sturdy thing to sit on (balance ball doesnt always help there lol) it gets a lil harder....then again...thats the whole point of working out right? haha the only thing i cant really do are the lunges unless i can hold something sturdy. i cant walk and do them or i would probably fall over but arms are strong...i can do squats and bent over rows and stuff fine.

i hope i covered it all for you! now for the next chapter of my novel

Boss man- thank you very much for that! thats where my main quote comes in. even tho im not a leader (i rather fallow ppl just so i dont keep walking if someone stops and i never notice ) but if my actions can inspire others, to dream more, learn moire. do more and become more.....then i feel i made a difference. and thats something i want to take advantage of with having this condition. things happen for a reason. and if my reason was to go through this much pain and struggle.... at least i know im strong enough to handle it and i can clearly show it and if that helps inspire someone else to show them you can do anything you want if you put your mind to it and tryed. then by all means thats what i want to do. my mom also once told me...even jokingly ...."you are the chosen one, you are the one who will bring hope to others" well....it just kinda stuck with me so in whatever way i am able to help make someones life a little easier by showing them how worse it could be and how you just gotta get up and keep trying if you fail....then its what im gonna do but thank you! i already feel like the lil runt of the litter here so far you all have been quite helpful!

[Hope4Life]

tomorrow im going to gainesville FL where my neuro docs are located, to talk with my plastic surgeon who removes other skin base tumors, about a few i want to take care of after my half marathon next jan. something like this would be outpaitent surgery but im also trying to ask about reduction. a minor one bc after the weight ive lost since jan this year....about ten pounds....the top heavyness isnt going anywhere with working out. its genetic and i just have the family boobs LOL. soo....i think it also plays a part in throwing my balance off so im going to at least ask what can be done. i rather kill five birds with one stone then go under the knife five seperate times im in the best shape i have been in a long time so i have no worries about weather my body could handle it. i have been through worse while my body was weak so this should really be a breeze. so tomorrow is just to see what they say and a possible MRI along with it to see how big or where the tumors are located to determine it they are easily reached or more complicated...ie...if they are on a nerve or near a major one. wish my luck and cross your fingers

Amber~

"If your actions inspire others to dream more, learn more, do more and become more, you are a leader" -John Adams

[Boss Man]

I wouldn't waste your time with Wrist Curls, all that weight being used near a small joint like the Wrist, is potentially not very good over the long term, for anybody.

I hope the appointment goes well, and I wish you lots of luck and best wishes.

Take care of yourself, and go with the strength and support of this site, because I'm sure nobody here would want anything less than the best outcome for you.

.

[katiesuarez]

Best of luck to you, Amber. Keep us updated. We'll be thinking about you!

[Hope4Life]

thanks guys! the sucky part about today....when you have to drive four hours to see the doc and have him just basically tell you that "if they bug you enough we will take them out" so yes, basically i can get what i want removed before the risk of growth occurs and causes more issues. as for the reduction...that will wait till after the race and we will see where they are at, at that point. i have to see a foot doc to help figure out the balance thing/ foot issue but otherwise i basically just need to get a date set and surgery will go forward. no mri. ill be getting one of my brain and spine in the next week or two so tune in for more updates later

[Boss Man]

Well some positives and negatives, but I'n sure things will work out. Best wishe and chin up okay .

[SarahPT]

Woww Amber thanks for sharing. I have had many health problems that have unfortunately held me back at times, but not nearly as serious as you. You have a great attitude, Keep it up!

Cassie made some good points. Seperate cardio and lifting days are good. Free weights are wonderful, and full body starting with larger muscles and working to small; both excellent points! I'm happy to help with any fitness and nutrition questions you have.

[Hope4Life]

thanks guys!! now here is a huge change im puzzled with. saturday i was my normal weight, like 25% BF and 49% water (my scale messures both! plus weight ) well as of yesterday and this morning...my weight still that 134 ish but bf was 13%! and body water was 60%! i had to do it like five times and i did it both days and this is my reading?! WOW!! is that motivation or what?! lol and the only thing that was at all different was the fact saturday we had a company picnic and you can rent bikes...well bc of my balance..i rented a trike! those things are awesome! i have one myself but not anything major..its mainly cheaper for kids cus i wanted to try it (i wanna save for a real sports trike now!) but this one had a chain and steering with body leaning. it was a LOT of fun but i rode that and another four wheel bike for a couple hours on and off and was out side all day but other then that ...the only thing different was the fact i had fish for dinner sat night and sunday night. but NO idea why bf dropped so much and water raised that much! but i aint complaining!

as for the other things....boss- yeah there is always a positive and a negative....but its making sure you MAKE a positive out of that negative...thus u end up with two positives

and thanks to the other replys! i have cut down a tad on cardio and ill do just a 5-10 minute warm up and then do machines. i gave the circit thing a shot...doing machines as in...push, pull and leg, push, pull and leg. alternating them the past couple visits for veriety and its a nice change. im defintily noticing improvment tho! and according to my stats i have been keeping track in a notebook. ive lost 20 pounds of fat, gained five pounds of muscle and 15 pounds of water so im a lot more hydrated then i used to be which is a good thing. but im most happy about the fat loss

this is just a high point on the road of good health and hope to get higher if i keep it up! take care!

Amber

"hope is a good thing, maybe the best of things, and no good thing ever dies!"

[Boss Man]

You have a mistake there. You cannot lose 12% bf in 24 -36 hours, and increase Water by 11-12%.

Maybe the Water at an outside pinch, if it was related to TOM, but not the Fat reading. Somehow that reading has been read or inputted incorrectly, I doubt it would be possible to lose 10% of that figure, (1.2% bf), in that time frame, unless you were on a no Fat, low to no Carb Ketogenic Bodybuilders diet.

[Hope4Life]

im just as baffeled as you are boss!! i dont understand it either its why i did it over and over and then again this morning....we will see what it says tomorrow. im still not complaining tho! id just like to think of it over a months period thats how i compared them...i gradually lost and gained it back and fourth but from the start of the month till now...thats what i have.