An Open Letter To all Steemians,#introduceyourself
Blessed day everyone!!!!
. I am Rafael Gregor O. Ursal, 33 yrs old from Philippines. I studied at University of the Philippines main campus at Diliman Quezon City took up Mining Engineering back at 2002 but I wasn't able to finish my studies. Unluckily, I inherited a rare disease which runs into our family genes. Among our clan I was the eight to acquire it. AND, this disease caused my permanent orthopedic #disability
It was a very mysterious syndrome ( a collection of different diseases). Medicines was so expensive and treatment as well. The symptoms manifested in me right after my mother died of the same symptoms. I was 14 yrs. old back then. Poverty hastened and aggravated my case leading to a lot of secondary diseases and infections. But God was so good. After 10 yrs of battling with the mysterious symptoms finally we come up close to a diagnosis, I was 24 then. But still my disease is not well confirmed. My diagnosis falls, considering the symptoms, into two different syndrome GITELMAN SYNDROME AND BARTTER SYNDROME. This two syndrome exhibits overlapping symptoms thus making it hard to differentiate which of the two I do possess. The only way to finally pinpoint is to undergo a gene testing which can only be done abroad ( my doctor told me it can be done at U.S. or U.K.) but this is so expensive. As of now I am only undergoing symptomatic treatment . Meaning only the symptoms are being treated. GITELMAN AND BARTTER SYNDROME are two diseases at the kidneys but of different treatment.
From 2004 up to 2015 I was battling for survival. Medicine was in scarcity because of poverty. We cant afford. Thus I was isolated from the society and in prison to the most unexpected cell of all, my own body. In bed, is where I am being fed and bathe for many years. Depression reigns, anger persist, blaming roars. Bullying was rampant. I was miserable. I was hopeless. I was alone. I cried so hard. But I a have dream. That one day I will be back, obtaining again what was all stolen from me. I will be running again. I will dance as I used to do when I was a child.I will be performing in stage again. I will regain my lost youth.
I tried so many ways how to deal with this gift/curse. I fight as much as I can but even warriors get tired. I do feel weak at times. I cant remember how many times I told myself that I cant fight anymore. I always fall. I felt I am a failure. But life never run down of giving me reasons to go on. I don't know how I manage to stand up again and again and again. All I know is that I don't want to a burden to my love ones for the rest of my life.
Being sick is not just a personal war inside and outside. It also affects the people around you most specially your family. When I cry they cry more. When feel in despair ,they feel hopeless too. So I must go on. I must win this life. This was given to me for a major reason. That I am still figuring out.
Countless struggles. Shed so much tears. Until one day back at 2007 I met people who helped me not just financially but also spiritually. Starting from there from people to people I was able meet the answers to my questions...to my pain. Fast forward in 2010 finally I undergo a two weeks continous medication and laboratories. And was so close in determining my real disease. As hope was on your grasp, it slip away again so rapidly. That was the time I learned that my disease has no cure. Its a lifetime expensive disease. It is progressive. One day I will be spending the rest of my life back in bed again. Sooner than I get old. Those truth was heightened after I realize that the test I needed can only be done overseas. All the smiles soon faded. I was depressed once again. I gave up.
At the time I was feeling worthless, feeling helpless. I realized that there were people who feels more sorry than I am. They cant afford seeing me at my worst, it was my family, my friends who stayed in my rough years.
I realized that life will not give you all that you want and you cant have all that you want. Life is a continuous learning. One greatest lesson I learned from all of this experiences was: Don't be miserable for things you don't have instead Be grateful of what you already have and start from there.
So that is what I did. Back in 2014 I find ways on how to start an online MLM. Being isolated and going back was real transition. It was a struggle. Learning an online MLM was tough . Little by little I was able to fund my medicines from my small earnings. At 2015 because of continuous medication I was able to go out alone. From bed to wheelchair to adult walker. I aim for a physical progress. This may be nothing to other people but for me it was a dream come true. Its a major achievement. Fast forward 2018, looking back and typing this story now makes me feel I am so blessed. I may not have an awesome life but In my heart I'm shouting that I made it. My life will be a continuous struggle because of my case but I will fight with a smile.
Looking back at all those humps. holes and traps in my life... I realized that for all those battles I wasn't alone. I have my family with me. I have loyal friends. I am meeting new friends. And God never left me. He was always there beside me. They all shed tears when I cry. They were with me.
Thank you will never be enough.
I don't know how long I will be living this life or how I can stand the pain of my syndrome. With the time left I want to have a fruitful life. A meaningful one. I am not perfect . I still commit mistakes, I do still stumble. I do still figure out ways on how to fund my medications and monthly laboratories. Yet I am learning this game, game called life. In my death bed I will whisper that I fight a good fight.
All of us have our own silent wars. We all have our own battles to win. We all have our own stories of struggles. Always remember, we are all heroes in the eyes of our people, they can be your child, your parents or friends. WE are all winners in our own respective way. We all deserve to live and be happy and make others happy.
We only have one life so lets make the most out of it.
May this be a new way of expressing who we really are.
I came here not just to inspire, bless, share and give hope to others but I am here to be inspired, to be blessed , to receive hope from no one else but by the community most specially you who are reading it right now :) :) :)
May #steemit be a place for me to inspire other people with my story. May this platform be a way to meet new friends to encourage and will encourage me. May this new form of social media be a venue of generosity, positivity and encouragement.
Thank You #SteemitCommunity,
Sincerely Yours,
Rafael
#BeyondDisability
Welcome to the STEEMIT community you won my VOTE I hope your help with the VOTE and FOLLOW UP https://steemit.com/spanish/@salas92/personaje-la-qlera
thank you salas92. your the first one to do this ..still figuring out this platform.
will follow you
Hello Welcome to Steemit just Upvoted and Followed you I hope you will follow me back and upvote my first post in return
WILL DO @danimal
thank you
Welcome to Steemit, your story is hard to hear, but powerful to hear how you have risen above it. Best wishes and luck to you. God Bless.
thank you for welcoming me @archive.xyz
already followed you @archive.xyz
Welcome kua rg finally you are here na hahhaa support lang natin isat isa 😍😍
push natin yan
Welcome to steemit beyonddisability. Best of luck to you!
thank you for welcoming me @lopezdacruz... best of luck to us
Welcome to steemit family
thank you so much @rojelly
welcome and finally you made it God has a purpose. Keep on steeming
thank you @mariejoy ..you were a great help
Much appreciated thank you
I have personally witnessed all forms of disease vanish through following a mucous less diet, check out Dr. Morse for fore info. Basically 100% fruit diet and detoxing the body through other methods.
Welcome to the Steem World!
I have recently made an orientation video that will help you in your journey here - and will hopefully answer all the questions that took me months to figure out.
I wish you all the best here on Steem!
I will also use the tag : @originalworks for this post, this will summon a robot that, if you wrote this original article, will give you an additional upvote. :)
text of this post and it appears original!
tnx for the support @originalworks..
thank you @maneki-neko
Hey there @beyonddisability INSPIRING ! Welcome to Steemit! If you're looking for the latest and greatest news on Bitcoin, Ethereum and Cryptocurrencies, make sure to check us out :) especially if you're an investor. Our team read over 121 articles, whitepapers per day, we do in-depth research on upcoming blockchains and watch over 100 videos and segments and filters them out to give you the very best news and tips on the market. Cheers!
this will be a great help @digitalnews. thank you so much
Welcome to steemit :)
A very inspiring story
thank you so much @chrissy0419 for welcoming me
Welcome to steemit @beyonddisability lets face the world without fear,face our circumstances in life think positive and hug the posibilities in the future stay strong my friend.. :)
tnx bro ..finally met you last sunday.
Thank you guys for welcoming me and reading my story :)
thank you for the upvote khackett, cqf, marou, eleazar, deepak2001, chrissy 0419, salas92, sayemmia, lee.cherry. lopezdacruz.. i highly appreciate this... im so happy for my very firrst day in steemit :)
Hey Rafael, I am inspired by your post, I think you are doing great, well doen for all you have achieved since being diagniosed. It's a challenge to learn how to manage but I believe you have got this! Sending you best wishes from the UK
:) :)thank you so much @francesmary... oh my God your from UK. One of my goal her in steemit is to be able to gather the money I need for my gene testing. I would be needing P300 000 I guess. Thats a very cheap estimation for the travel , gene testing and the stay either in UK or US . Can I stay in your place if ever I achieve this amount haha.. Just kidding :) :) :) . Thank you so much . Followed you already : )
If I had space you could stay at my home but I only have a small place - but for sure I could help to find you a place to stay. I assume you would have to go to London for the treatment? If I can help you in any way then please ask
thank you so much @francesmary. Got a new friend here already. Once I am able to collect the right amount I will pursue this gene testing. I feel invigorant right now :)
Yes, stay positive, you will achieve your goals. If you need any help or advice along the way then ask me any time!
that would be great :) if there is also i can do fro you .pls let me know :) :) :)
Thank you :)
Welcome kabayan.
Steem On!
Enjoy your stay here:)
salamat kabayan...gawa tayo ng group na mga pilipino. suportahan natin ang isat isa dito sa steemit. finallow na kita kabayan
Rafael, siguro nagpang abot tayo sa UP pero 00-student number ko. Sa daming pinagdaanan mo I am happy to see you here sa tingin ko kayang kaya ng Steemma fund ang gene testing! Keep posting I will do my beat to support kahit bago p lang :)
02 student number ko ..college of engineering.. nagpang-abot nga tayo kapeyups. Miss ko na ang UP. Nahiya na ako dumalaw doon.Thanks sa support kabayan. 4 days old pa lang ako dito sa steem. Finallow na rin kita :)
thank you for the upvote @surpassinggoogle. This is of great help :)
Hi there @beyonddisability! Yey at last you're here! Welcome to our beautiful platform! Keep on Steeming 'san ^_^
thanks for the warm welcome :) :) :) ..steem on :)
Welcome to Steemit Rafael! Awesome pictures! I hope you enjoy your time here and be sure to check out DTube and Dsound as well. These are the video and audio platforms that are based on the Steem Blockchain and are great additions to your Steemit world. As well, I hope you will look over some of my content and consider following along! Kindest regards.
followed you already. thank for your message and tip
followed you already
Welcome sa steemit kabayan .
salamat kabayan. finallow na kita
Such a strong spirit with abundant optimism. Your sharing is a big inspiration. I look forward to reading more of your sharing. May God bless you with more grace.
thank you @jazzhero. followed you already
Disabilities is not the hindrance to success friend.welcome to steemit brother!stay strong always my friend.
thank you @natz04 . followed you already