Amber's Journey - working out and the difficulties

[Hope4Life]

hey sarah! and sorry to everyone else too...i have been a bit busy these past few weeks....im in ohio at the moment with visiting boyfriend paul. so far things are good but i have noticed with the cold weather that muscles and balance stiffen and it gets harder for me to function better. being a florida girl im not really used to so much coldness so im trying to adjust but doing good for the most part.

the other lil update is just the fact im hoping for yearly MRIs next week. i go home sunday and hoping to get those taken care of to see whats up. and once i get home i can get more settled and catch up on here cus its been a while hope all is well

Amber

[Boss Man]

There's never a need to be sorry for having a life.

We all know you have a sometimes very difficult life, and it's understandable you need some YOU time. You'll always be a great part of a community like this, so just keep doing your thing, and no worries okay .

I hope things continue to be the best they can be for you.

Take care, best wishes and GOOD LUCK.

.

[vamp]

Well, I have finally taken the time to read your journal and must say I am glad I took that time to do so!

You are an amazing young woman. And although you say you prefer to follow your actions truly do make you a leader.

When you said lunges were a problem because of balance and that you would need to hold onto something, do it. Something like a chair or hand rail... something sturdy. I think you will find them very helpfull to building your leg strength, balance, and agility. Just thought but worth a try no less. You can hold a dumbbell in the other hand as you progress and get stronger with them.

Not just wishing for but also hoping for the best for you.
Cheers

[Hope4Life]

an update- im having MRIs next week. finally got schedualed. brain MRI is tomorrow and spine MRI is wednesday. i might also have a scan of right arm. i have a small tumor just under skin. you dont really see it unless i straighten and flex arm but i think its causeing issues now bc i feel like arm has poor circulation like theres a blood clot and its RIGHT around the area the tumor is....just below the elbow on the underside of forarm. its not like pain...its just really discomforting. like when you have a cramp in your calf and only way to make it go away is by walking it off. well i cant do anything to make this go away unless i take some of the pain meds from past surgerys. those help i just dont like taking them cus they are the big boys in pain killers lol. its been feeling like this since wed night...some more intense then other times but its a constent thing. i might be looking into removal of it this week. i dont want it to screw up anything in that arm bc its writing arm/hand...the right one so more dominant arm. if i had surgery i would be outpaitent. easy thing but it isnt easy to get unless i just go in the ER but its not THAT bad of pain. its just REALLY discomforting and plus docs are four hours away.

it shouldnt affect anything huge with training...just maybe weight lifting lol but that doesnt fully stop me from walking to train for the race in jan. just kinda agrivated it needs out NOW when i wanted to wait till after the race to take care of more things at once. you win some you loose some but better safe then sorry so i want it out like...NOW.

[Boss Man]

One thing I will say is, if you want to protect against such things again, tne recommended arsenals in your diet include things like Whole-grain, Tomatos, Beans, Berrys, Garlic, Spinach and Orange.

You may already do this, in which case no worries.

Of course you need to be aware with Spinach, it does have Oxalic Acid in it, the same stuff in Rhubarb leaves, and can be problematic in high levels, so limit Spinach where possible, but

Also try looking up B17, (Laatrile), basically Apricot seeds and Kernals and see what you think of those.

GOOD LUCK, and very, very best wishes .

[Hope4Life]

short one today....no MRIs yet... insurance company needs to be authorised or something by a doctor saying i can get them. and working to find out a surgery date for this tumor on arm. the joy! i just hope its soon. i had a good cardio day yesterday tho...no weights for a bit till i get this issue fixed but def. a good cardio day so will continue those when i can. otherwise things are good.

[Boss Man]

I hope all goes well for you. GOOD LUCK.

[Boopster]

Amber,

I have such a hard time keeping up with all the new posts and I realized that I ran across yours a while ago and never devoted the time I should have to respond. After reading your story you left me speechless, which according to husband is quite a task of it's own

I am amazed and touched by the young lady you have become, full of so much wisdom and I admire your courage. It's so easy for some to just throw in the towel and give up long before they should. But you dear have chosen a different path and what an amazing role model you are to those who surround you and I'm sure people of this forum. I can only say I am in awe of you and all you represent. It is an honor to read about your journey and the obsticles to face and definately puts life into perspective. I think you really hit the nail on the head in your original post regarding motivation. Just when you think you have it so bad, there are others who would chop off their finger to have it that good and be able to accomplish certain goals. You are an inspiration to all of us and I will always keep you in thoughts and prayers. Please continue your journey to keep us grounded and help us realize what we have is far much more than what we need. I found one more quote for you given to me by a former patient who touched life:

Hope has two beautiful daughters. Their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.
-- Augustine of Hippo

[Hope4Life]

thanks guys!! sry the busy life has caught up with me again. for one i have one more final to do for school. an essay thats not the simplest thing lol. and yesterday i had surgery.

i got home last night. was at hospital for like four hours total. surgery itself was like an hr. i was awake but sedated to the point i felt like i was sleeping. the removed a tumor on back and below the elbo. they were both just under the skin. the back was easy but they used a nerve block for entire arm bc they though this tumor was in the lining of the nerve...turns out it wasnt but i woke up fine except...i felt like i had no arm LOL...i couldnt find arm nor feel it nor move it at all...id think to grab something with arm and nothing is there to grab like the cracker or drink afterwards...then i found it laying in lap...WTF is this?! LOL id touch it and it felt like i was playing with some other persons hand who was sleeping. it was warm but i could NOT feel ANYTHING....id lift it up and or move it and nope...couldnt feel that either. it was just like "hello!?!?! wake up hand!!" LOL

the docs said it would take like 6 hrs to ware off. after a good hour or so during the drive home.....once i woke up from surgery i ate a few crackers drank something...then they took out IV i got dressed...with help of the mother LOL...and then left like half hour after surgery........but after headed home knockle was twitching...then i could twidle fingers and lift arm like two inches a few more hrs later...very difficult tho...it was a four hour drive home so when i finally got home i could move fingers well enough to type but arm was still pretty heavy....

the nerve started reactivating and so before i went to bed i needed a pain killer but not to big of a deal....been through worse well i woke up fine. feeling and the pins and needles feeling is all gone....very moveable and can straighten it fine. i took the ace bandage off and cut off part of high socks to cuff arm instead of a huge bandage......all in all im fine here and altho the incission site hurts when i hit or put pressure on it...duh lol....im fine.....i gotta get back into training but no weights for me yet....but tryin for cardio......i gotta get trainning for a power walk bc i cant walk that fast and im not fully sure how to train for it. so if any one has any ideas...feel free to speak up thats all for now! sry its been a while

Amber

[Boss Man]

Like I said, you don't need to apologise for anything .

As for the walking, I suggest you could use a basic method, where you walk for around 2 minutes, 30, speed walk for around 30 seconds, and repeat for 30 minutes.

Then do that 5 days a week, making sure you split on the off days, so 3 walks, off day, 2 walks, off day, something like that.

Then at the start of each week, increase speed sections by 10 seconds, decrease slower sections by 10 seconds, until eventually you're speed walking for 30 minutes solid.

Then you can work on duration.

[Hope4Life]

hey strangers!

been a while......down to the final stretch here and half marathon in disney world FL is jan 10th!

update for me tho.....i got the results of MRIs of brain and spine. as compared to three years ago......i have a tumor in brain that has grown 1-2 mm which is nothing alarming. so continue to watch them. but i have some more growth of tumors in spine. i dont think alarming and not calling me in for surgery....BUT....i have a doc appt with a new doctor who specializes in spinal tumors on monday jan 12th. yes that is the monday right after the marathon weekend so that should be fun!.im not worried to much but it still sucks that they are big enough to the point of needing a doc. ive seen and read a little of MRI report andsome grew a little some grew more.....5-8 mm but i have one thats 1 cm thats stable and one of them are pressing into spinal cord but...thats all i really know off of what ive read. doctor speak isnt exactly in english so after the race and doc appt i will post a new update!

for anyone who wants to see the story and or contribute to cause to raise money for research for the childrens tumor foundation...please click here to donate and read story!

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

[ancosa]

Hope, I was recently diagnosed with NF1. I know that NF 2 can be very hard to deal with as some of the symptoms are worse than condition. I have hundreds of tumors located on the base of spine and it can be very painful at times. I was just diagnosed in october so I am fairly new to the condition and have felt quite alone for some time. It was almost relieving for me to see your post on here , just goes to show how common this disorder is and how much work still needs to be done to find a cure. Its sad that NF affects 1 in 3000 of all births and yet there is no preventative measures or cures aside from surgery. To be honest, working out and exercising has really helped me with pain. I worked out a lot before being diagnosed. I know how frustrating trying to exercise with some of the pain can be, back in september I was unable to eat ANYTHING other than liquids for 3 weeks due to a tumor encasing colon. I lost a lot of weight and a lot of ambition and I know how it can feel. Always keep your head up because some day there will be a cure! I wish you all the best and any time you need to talk I am only a msg away.

P.S - I'm sure you know but if you don't, there is a man named Dr. Weinberg who specializes in NF and is one of the BEST plastic surgeons/ tumor removal specialists for NF out there.

[Boss Man]

I really hope that things can move forward in a positive way for you Amber, and for you too Ancosa, I wish you both well, and I wanted to say without sounding patronising to you Ancosa, that I think you should be proud of speaking out about your situation.

I appreciate it must be very hard for you, and I do empathise with you, and wish you as much luck and success in your endeavours as Amber, and of course this site will try to be a place for you to find support and help, and hopefully one day, people like you and Amber will get the curative answer(s), you both deserve .

[Hope4Life]

ancosa- sorry to hear of your diagnosis. boyfriend also has NF1. his case is VERY mild compared to mine. and what you will learn is that altho NF is NF.....ppl who hear of NF all think of what NF1 can do to you. NF2 is way more rare. NF1 is 1 out of 3,000 births...NF2 is one out of 25,000 births. the way i look at it. NF1 affects a lot more about appearence with skin tumors or abnormal growth affects and limbs. NF2 is kinda a secrete silent killer. if you met and looked at pictures youd think im totaly normal...i have or had a few skin based tumors but ive had them removed if they caused pain or just to big....i havnt had spinal surgery yet and dont plan on it lol....but ive had share of brain tumors removed. which one op, like i said, took hearing, a lot of vision, some balance, and slight taste but thats not huge....at least i didnt die. it can cause worse things tho....

but yes i fully believe the act of working out, staying fit, and eating right will take you FAR in the fight with NF till a cure is found. all of this will take you far in LIFE just ppl neglect themselves and thus we have more obese ppl and unhealthy. working out has helped me alot with balance. altho im still a tad drunk LOL....at least i dont fall and i know how to catch myself if i do bc legs are stronger. bodys a stronger fighter so i can leave a ten hour brain surgery and leave in three days instead of 5-7 i feel its a common law of life and karma where if you take care of your body....your body will take care of you.

and goes the same way for you if you need anything to help deal with your recent dignosis....i shut out the world when i was dx. let me know if you need anything...oh btw if you didnt know about this site...its great on both and what im running for.... and had a lot of info on NF.... www.ctf.org

[Hope4Life]

had the marathon is disney last weekend! that was a lot of fun and did the half. a bit cold at 4 in the morning and the start was around 6 but it was good.

the new news is....now i need spine surgery. on tumors at T4 and T12. that might be around feb 10th if we can get that date. wanna just get it over with so i can get back to the gym and workout this will be first spine surgery so no, im not as calm or non worried about...im very worried and wondering what it might be like or how ill be after it. but... just want to go get it done so i can get back into the swing of life and not worring over what the next card with NF will deal me. so we will see and ill keep ya posted on it stay tuned