Life with brain tumor and NF1

in #life6 years ago

Good evening to everyone, I am new here, this is my first release and I would like to share with you how to live with a tumor from a personal perspective.

My name is Nikola I born in 1992 in Belgrade in Yugoslavia. Today Serbia.

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In March 1994, as a baby, I hurt my hand during sleep and my parents take me to a hospital in a hospital where they found that my hand was partially broken.
For 7 months, they tried to fix the doctors because my arm did not cure when they were broken up in the hospital to get over it.Then, for the first time, I suspected that I was suffering from type 1 neurofibromatosis I inherited from my mother.
In December 1997, after the parents noticed that I started to see a weaker one, and after the examination of children's neurophthalmologists and MRI, the diagnosis was confirmed.
The review noted the existence of a benign tumor on the ocular nerve, on the optic hyasma.
After that, regular controls to date have been accompanied by the state of the tumor that is still there, as it is very risky to remove it ... Due to this problem, for the sake of luck, I have not lost sight, but my vision is significantly weakened. My diopter is -2 on both eyes.

Let's get back on our hands. In 2000, I was trying to extract my right forearm, which was slowly increasing due to NF1. It was done at the Institute for Orthopedics in Belgrade, the method of Ilizarov
Even this method did not give complete results and after 6 months the device had to be removed because the hand began to discard it.
My parents were then told that the doctors had tried everything they could and could not help me anymore and that the situation was being monitored. Today my hand is 15 cm from the left, I can use it at most 40% with orthopedic help and it looks like this.

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I can not write with her, stop or even carry weight of 3 or 4 kg in it, I'm practically left-handed because of that.

And if my illness is not contagious and is not conveyed by touch, by grinding, looking or staying in the same room with me, the children have been avoiding me throughout my schooling. Symptoms of myself are not beautiful, but I'm not silly if I have them. Symptoms are manifest in appearance of changes in the skin in the form of a color of color of coffee and fibers of different sizes. I photographed them on my body.

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Today, with my 25 years of experience, I try to lead as much as possible a normal life. I did not pass the driving test, I do not know how to ride a bike, roller skates, skate, I can not swim, but still I do not mind traveling when that heavy family financial permit allows me, I like to volunteer in sports, to meet new people I consider that even if I have reduced working abilities, I have the same rights.
I study at the Agricultural Faculty in Belgrade at the Department of Plant Protection.
My favorite sportsman is Novak Djokovic, whom I met last year.

Now I would ask all the people who can do it and want to vote for my post and donate to me as much as I can, because because of my hand I can not work, and my parents have been out of work for a long time without having to pay a rent in the student dormitory where I live.
I have not paid for two months and I'm afraid they will have to throw me out. It will mean that I will be prevented from completing the college end.

For all your questions I am at your disposal and I will be glad to answer you.

Finally, I would quote my doctors from my illness not to die but to die with it.

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forgive me, I can only help you with prayer

No problem thank you for that.

Žao mi je što te to u životu snašlo ovako, ovo mjesto je dobro za steći prijatelje i dobiti pomoć u raznim stilovima, ja ti želim veliku dobrodošlicu ovdje i nadam se da ćeš dobiti ono što tražiš @dzonibro92 👍😎

Unatoč tegobama vidim da si na nogama i tijelom i umom, sve što je teško ima i dobrih strana, teško ih je naći te pogotovo u tvojoj situaciji, ali ti želim sve najbolje kod svega i novih tehnologija koje će ti nadam se pomoći u skoroj budućnosti ✌

Hvala ti na podrsci. Naravno, ja eto imam fizicki invaliditet, a invaliditet svih njih koji su me izbegavali je nazalost gori jer nije vidljiv ( u glavi ga imaju). Idem kroz zivot i pokusavam da se borim koliko mogu.

Drago mi je da imaš snage, i želim ti je još (te mentalne i ta snaga volje) koja je najvažnija, ti koji se prave da problem nije njihov i koji bježe od onoga na što ih podsjećaš (da i njih može zdesit)nisu ni bitni na koncu svega, usmjeravati pažnju na njih u bilo kakvom obliku, a kamoli ljutnje je uzaludno, uvijek će se naći neko poseban, neko tko te vidi i čuje, držim ti fige da ih što više okupiš oko sebe @dzonibro92 uistinu drži se 👍

Poslao sam ti poruku na fb pa ad vidis ako mozes odg mi , tice se steemita. Pozdrav

U potpunosti se slažem sa tobom, imam decu i uvek kažem: Bolest ne biramo. I protiv nje se borimo. A opet, ima ljudi koje roditelji rode zdrave i prave a sami sebe unakaze kroz život. To je tuga.

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@dzonibro92, deluješ kao snažan momak. Postoji sto stvari koje trenutno mislim ali bih izbegla patetiku i samo spomenula da su neki od najvećih bili suočeni sa takvim opterećujućim poteškoćama. Nekada problemi iznedre najbolje iz nas, pretpostavljam. Stay strong!

Hi man, just upvoted you. Sadly on steemit there is a lot of plagiarism/identity theft; meaning that even if you seem legit, me and the rest of steemit don't have definite proof that those pictures are really yours...

What would help would be you taking a selfie, holding a piece of paper, with written on it : your pseudonym, today's date, and the word "steemit" like on this post: https://steemit.com/introduceyourself/@sella/introducemyself-b69e9889d3c69.

Given your disability I undertand maybe this won't be easy, but it's really important for us to know that we're actually upvoting you and not some scammer. Good luck and welcome!

Sorry men. Because I didn't see your comment earlier. 1516937327341-613576968.jpg

I can left you my phone number for viber and whats app if you and other steemian want to see me in video call.

thanks a lot. Do you already know how you're going to convert your steemit rewards into serbian dinars?

Not realy, @ivan.atman send me link of video (Hvala Ivane) and if I understand I must buy bitcoin for steemit dolar and after that I can bitcoin transfer in dinars.

Hmm yes, step #1 is converting SBD into bitcoin/other cryptocurrencies that you can then sell for serbian dinars/euros/etc (fiat currency).

You can convert your steem dollars (SBD) for any cryptocurrency you like, including bitcoin, using either an exchange or a website like blocktrades. The advantage of using an exchange is that the fees are lower, however it's more complicated to use, while on websites like blocktrades the fees are higher, but it's extremely easy to use.

Then you have to find an exchange that allows you to sell your cryptocurrencies for serbian dinars or some other fiat currency... sadly for that I can't help you, since I only know exchanges that trade in US dollars or Euros.

In total you will have to pay 3 "transaction fees" :

  1. first conversion fees (SBD->bitcoin)
  2. Transaction fee for sending bitcoin from 1 address to another address (from the first exchange to the second one)
  3. second conversion fees (bitcoin-> serbian dinars/USD/Euro)

be careful about them, for step 1 blocktrades in particular has crazy high fees imo.

Bitcoin transaction fees are pretty high too, use another crypto if you can (btc fee for 1 transaction: 10USD, while Litecoin transaction fee: 0.25USD (https://bitinfocharts.com/comparison/litecoin-transactionfees.html).

Ok but also I don't know how long I can keep SBD in my walet. Is need to make transaction each 7 or 10 days?

No, no need to make any transactions, you will not lose your SBD. You get your rewards with a 7 day-delay, then they are yours forever

this link should help you : https://steemit.com/faq.html#How_can_I_withdraw_my_STEEM_or_SBD_coins

I'd recommend you read the whole steem FAQ if you have the time

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