Dear Diary: My Vision is the Last thing that My Condition will Take from Me
Today I am crying about what I had read about my rare condition, the Leontiasis. It just states there that treatments were unsuccessful due to complications just like mine and that patients go blind due to optic nerve pinching by the growing bone of the face and just shook me and it scared me from my emotional foundation that I am carefully building to fight this impossible problem I myself finding to fight on my own.
I am crying about it now and I am actually avoiding to research well for my condition and it just so happened that I want to know more about my condition one more time and it all just made me sad as the disease itself is depressing as it is disfiguring and disabling.
I do not want to get blind. By the signs that I am getting blind I will just take the plan B option, which is not to get into that point. Now I can still see with my eyes but not long, maybee a few months until my vision deteriorates. But it won't get into that point.
I don't know now if doctors can help me because of what I had read. My nephrologist ordered for my dialysis not to use heparin but to employ flushing because of my mouth overgrowth thinking that it was a mass and not a bone. The point on that is that she is stupid enough not to even know about Leontiasis.
I don't know what to do now. Unless somebody will snatch me from my home and get me to the hospital for treatment then it will be fine for me. But right now I am thinking to pursue this medical problem for solution while I was the only person in my family who seems to want it.
My back is painful, my appearance in horrid, I can't speak and eat normally. I can't walk normally. Then I will be going blind and soon. No, I will not.
@cryptopie Do not despair.... easy words for me to say I understand, but I did a little homework, and if it is as you say then a parathyroidectomy will slow the advance of the cranial bone overgrowth. This along with some other treatments such as taking calcium and Vitamin D while lowering phosphate levels will stop the overgrowth or even reduce it slightly. So that is good news.
I am definitely not a doctor... but it seems you too have been doing your homework in regards to your malady, and that in itself is amazing because many would not even do that for themselves. Please hang in there. More help is on the way.... I just know it.
ps. I sent a little more steem from the post I made for you. It is not much but Steemians like @benjojo and @hanshotfirst @girlbeforemirror @dandelion @steemitph @bullishmoney and many others have heeded the call for help which is helping and I just know that there are others yet to know about this to help support you.
OK @streetstyle
I will still pursue what is necessary for my condition to stop or slow down. It is just I am scared about my situation and what will happen when things turns uglier.
I thank you for your encouragement and emotional and the financial support, it does give me hoe and lifts my spirits up.
God Bless you @streetstyle
@streetstyle Yes!! A parathyroidectomy will help with the bone growth, as well as balance out the calcium and phosphorus levels. Like you, I am not a doctor but I am a long time dialysis patient and I had a parathyroidectomy years ago. There's always hope.
Im so sorry you are going through this. X
Yes it will be too much. And if it does, I want out and off this world.
Oh! This is not good news... I understand your fear of going blind. I know it would be unbearable for you, since you need at least your sight to have contact with people. I'm holding your hand trough cyberspace to comfort you and to make you feel not so alone in all this. <3
I can accept the present situation including the pain but to lose an eyesight is not acceptable. @jamisa
I need help immediately.
I'm sending you a little something... Is there anything else I could do so far away... :(
Thank you @jamisa but what I mean is that I just wanted a swift solution to this problem because I do not want to get blind on top of all these.
Ok I understand very well
I know it's easy for me to say, but try not to think too much about what could happen. Try to hang in there.
OK but when sometimes when odds are gaining on me, it depresses me and putting me on my emotional tipping point.
I'm sorry it is taking time to find the best doctor. It is true that you are unique and complicated for doctors. That is why we need the worlds best in the job.
Don't google it anymore. Someone elses outcome is not your destiny. I just transferred a post payout. The next one will be bigger.
Thank you @girlbeforemirror for the money I am truly grateful for what you are doing for me.
I will now change the game plan on what to do and do it in the long cut like the medical system here wants rather than the short cut.
I had requested for some laboratory exam to get done, go to my nephrologist and consult with her, tell her what I wanted, and let her refer me to a specialist which will perform parathyroidectomy at least.
God help me.
God Bless you @girlbeforemirror and your family.
How about going abroad?
It is a very good idea @ since the medical standards for example 1st world countries are excellent but I have to consider one main problem which is money.
I appreciate all your support @surpassinggoogle
God Bless you and keep you and your family.
Hahaha don't consider money. Will is everything. I don't want to relate my own experience. Set up your mind to it stubbornly which is hard and go for it then money will pave way. Visa will not be a problem. Will is going to be hard to generate but it stems there still.
I can see your point @surpassinggoogle but I have to consider a mountainload of things, whom I will bring with me, I can't leave all by myself. How physically will get to the destination, where to stay?
And good luck for me passing the interview of the prejudicial uncaring heartless suspicious immigrant officer as I am a Filipino from third world country with no business interest or a pleasure to do with that country of destination.
Nope. Don't about odds. They won't exist in your case. I understand that feeling but i tell you. Pray and go for it. There won't be odds. Cut down a bit on worries. Pick one person who will go with you. Make decisions in your mind and keep it firm, then action will take place next. You aren't going for business or pleasure. This is a health case. While girlbeforemirror is working on getting expertise, start preparing within your mind. It's hard but it is possible!
Yes. If the right doctors can't come to you, I believe it is a very real possibility that with enough support and exposure we can get you where the care is available.
It has been done in the past for other people with unusual medical condition, I don't see why it can't happen for @cryptopie.
We can't wait for someone else to spread the word though.
The more people promoting his case, the better chance he has of being treated soon.
Yes, for sure it can be done. It has to do more with cryptopie, setting his mind up for this. I thinking going abroad works. If not to like a really developed nations, there are other nations known for specialized doctors
friendship and success always @cryptopie
Same happens to me when i read about some headaches, like occipital neuralgia. Just depressing. Stay strong my friend, may God be with you and guide you in perfect peace. If i get the money we will snatch you from your home and get you to the best doctors, at least one who is familiar with leonitis and dialysis. Blessings @cryptopie
I hope to stay strong @weirdheadaches
It seems that thee community is behind me and I thank God for that and I am grateful for such an awesome people behind my support.
God Bless you all.
Stay strong my friend:) Laban lang, kapit lang.
Wag mawalan ng pag asa.
hugsss para kay @crytopie
You can still use steemit even if you are blind, you can have comments read via text to voice
but for now I hope you get lots of opiates and video games!
I hope someone can send you an HDTV and an Xbox or PS4 so you can enjoy some good video games and nice opiate feeling, maybe someone can order u something off the darkweb if you cannot find medical opiates in your area XD
I really hope philippines can allow medical cannabis for people like you, and you should be able to grow your own opium poppies so you can ejoy poppy tea
anyay i know that youre now going to be recieving a lot of support for all the treatments tou can get
and maybe you can be flown to the United States to have some special treatment and lotsof good morphine pain killers given to you! It will be expensive but I know the steemit community can help you accomplish this goal! maybe we can get a lot of nice new treatment for you, or at least it could be fun to travel! i think you could one day have your own personal dialysis machine , do they have piortable dialysis machines? I lookd it up and i found a phone case with dialysis machine design!
Maybe we can one day have dialysis machine so small it can fit in a phone case?
Maybe we can invent artificial kidneys in teh future
but until then we should help get you an HDTV so you can experience the internet in all of its glory, I really think you should get an HDTv for your home as a way to contribute to your home, give your family something nice, i bet steemit would help send you an HDTV
also special VR goggles that can fit in your face would be a great project for steemit so we can allow you to experience some great virtual reality games
You can send me some painkillers, just whaat I need for now