Amber's Journey - working out and the difficulties

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Hope4Life
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Amber's Journey - working out and the difficulties

Post by 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 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. 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 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. “Hopeâ€
cassiegose
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Post by 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
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Post by 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 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 shoulder blade and working to get another soon.

so far 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
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Post by 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 weights or 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 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 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 opinion though. I'm sure there are others who do this differently and would offer different advice. :)

Hope this helps!

Cassie
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Boss Man
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Post by Boss Man »

Hope4Life wrote: "hope is a good thing, maybe the best of things and no good thing ever dies" -Tim Robinson :)
That's so true. I know from having the distinct honour, to read what people like you say about yourselves, is that the one thing that will always be true is, if the individual in a situation like yours, doesn't allow what's happened, to damage their Heart and mind. Then they can still be a truly wonderful person, who remains warm and emotionally gifted, and you are typical of such a person who has been through a lot, but retained so much human worth, value and warm emotion.

The fact you say you are as normal as can be, under the circumstances, is also incredibly true of many people like you. Anyone who has any sort of Neurological or Musculoskeletal condition, that can affect the persons physical and / or mental ability in some way, is not suddenly abnormal, or a damaged person, they are as normal "as they can be", under the given circumstances, and with the support and enoucouragement of compassionate and understanding people, such an individual can still do so much for others, the world, feel special, and feel valued, appreciated, and to a large extent respected, and feel like they belong, and how they deserve to feel.

I never fail to be be touched by people like you Amber, and many people like you have a big fight every day, to be as normal as possible, and many people out there will never know, because often there is no immediate or obvious physical signs with some people, even though they may have serious problems with hearing, sight, memory, back pain etc etc, and be on more than one type of medication.

Your picture and information shows a beautiful young lady, who is in a relationship, and it proves that you value yourself so much, you will do what you feel you can, to look your best, feel your best, and be able to give to others, (your significant other included), in the same or similar ways, to how people give to you.

Sometimes it isn't easy to grasp what a person goes through. You could try to do research, and find all the permutations of a chronic condition, and the treatment and medications involved daunting to understand, but the language of the individual, the courage, heart, beauty, spirit, is something that is understandable, and is obvious when you read what the person has to deal with and how.

I hope what you have to say here can perhaps inspire, at least one person if not more, in the future, to better understand and / or appreciate, how someone with a very tough day to day life like you, gets through, and finds heartwarming moments, and smiles, from such difficult and sometimes upsetting experiences.

I'm certainly always very proud to share a board, with someone like you. It humbles me, but in some ways, I feel honoured that perhaps in some small way, I can be someone who might be able to help somehow.

I will when I can try to read this, and I hope that whatever the future brings, you continue to get the very best out of your situation. You deserve that so much, and you should be incredibly proud of talking about your difficult life, I'm sure many wouldn't be able to :).

Thank you sincerely for sharing, and I hope we at Shapefit can continue to do our bit ot look out for you, and make you feel like one of us :) :).
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Post by Hope4Life »

ok... :) here we go with this reply lol

cassie- thanks a lot for that!

firstly the tattoo i want ( 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 lower back, sorta on hip. (not across the bottom lol) i didnt want tattoos to be in a spot where i could possibly have surgery at and 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 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... mom and nana loved them. 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 own. so i try to make use of 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 weight off of with a better controled movement. free weights, although i can lift things fine and 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 novel :)

Boss man- thank you very much for that! thats where 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 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 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. 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!
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Post by Hope4Life »

tomorrow im going to gainesville FL where neuro docs are located, to talk with plastic surgeon who removes other skin base tumors, about a few i want to take care of after 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 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 body could handle it. i have been through worse while 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 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
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Post by 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.

:).
Hope4Life
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Post by 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 brain and spine in the next week or two so tune in for more updates later :)
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Post by Boss Man »

Well some positives and negatives, but I'n sure things will work out. Best wishe and chin up okay :).
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Post by 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
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Post by Hope4Life »

thanks guys!! now here is a huge change im puzzled with. saturday i was normal weight, like 25% BF and 49% water ( scale messures both! plus weight :) ) well as of yesterday and this morning... 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 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 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 :D

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 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 :D

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!" :)
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Post by 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
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Post by 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.
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Post by SarahPT »

How's it going Hope?
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