HI. My names Jackie.
I have a bone disease called Osteogenisis Imperfecta, and another disease called hydrocephalus. hydrocephalus is a disease where fluid builds up around a person’s brain it in it self can become very dangerous if it is not watched carefully by doctors. I have a shunt which incase some people don’t know is a type of tubing, to be exact it is called a surgical drainage tube this tube starts off at the top of my head and goes all the way down to my stomach. It’s basically just a tube with a fancy little tip at the end, that fancy part sucks up all the extra fluid around my brain and drains it in to my stomach. Okay so that’s the first disease I have, the second disease like I said earlier is called Osteogenisis Imperfecta. This disease is the one I mostly focus on, this is the one that gives me all the trouble lol. This disease is a brittle bone disease, basically my bones do not grow and break at a touch. I remember when I was younger and my doctor was trying to explain things to me he told me my bones are as thin as a tooth pick and soft as Jello!!! so yeah obviously that’s bad lol. I break many many bones a day I pretty much break a bone every hour. I know insane right can’t possibly be true right? well sad to tell you it is all true!!! I break a bone when I cough when I sneeze some times I even break bones from having a fast heart beat and I break from taking deep breaths!! people ask me all the time if when I break can I feel it is it painful? well um yeah duh, is it painful when anyone else breaks a bone? yes it is, so why would it be any different for me lol, all I can do is try to explain it like this, People with O.I myself included experience the same symptoms when we break as anyone else in the world does when their bones break, the thing that’s different about it is the strength it takes to break them, its kind of like being in a car accident every day or being beat up everyday, I know that’s a little crazy to think but its the best way to describe how it feels to a healthy average person. I am 29 years old but I do not look it at all I pretty much look like im 24 months old lol. a part of the disease is your bones do not grow so because your bones do not grow your body obviously doesn’t either, so I am only 25 inches long and about 33 pounds. My body may not grow but my organs still have grown to a normal 24 year old adult organs, so because of that I got another whole set of medical issues, because all my organs are being crushed, best way to explain it is its like trying to fit 10 pounds of flour in a 5 pound bag if you really smoosh it all down it will fit but eventually all the sides are gonna start bulging out lol. that’s kinda like me, everything was smooshed inside of me so because of that everything’s on top of each other and well being smooshed lol, like right now because everything’s being crushed and because my bones are so brittle and deformed my spine is now pressing on my lungs and my lungs could not take it anymore and so all of my right lung is collapsed and most of my left lung 🙁 so I am now dependent on oxygen, I was put on oxygen about 9 or 10 years ago, I think I was around 15 or 16 years old the first time my lungs collapsed. When I was born my doctors told my parents I would die with in 10 days but by the grace of GOD I am still here!!! yahoo yahoo lol. This disease is pretty rare, there are different types of this disease when I was born there was a total of 6 types now there’s I think 8 there may even be more than that not fully sure. I have one of the most severe types, actually when I was born my Doctors said I had the worse case they ever seen, and still when I see different Doctors they are still amazed by me because a lot of them still say they never seen a case of O.I like mine, and anyone they have seen that look similar have all passed on with in a few years after birth. At this moment in time me my doctors and my family don’t know of anyone with O.I as severe as mine that have lived as long as me, now please anyone who reads this don’t get me wrong especially if people with O.I read this, I am not saying I have the worse case I am just saying I don’t know anyone and either do my Doctors with a person that has my case of O.I which is one of the reasons I made this blog. I want to be able to share my story and my life with others so people can learn about people with Osteogenisis and help other people who may have the disease. My goal one day is to become a writer so that is also why I made this blog am hoping to practice some of my writing and then be able to write my own book one day. I am not going to lie this disease is a rough disease to have it is very painful and for sure a struggle, but I want to show people, that if you have Osteogenisis Imperfecta or as we all call it O.I even though it’s a struggle and a life threatening disease it doesn’t mean it’s a death sentence, it doesn’t mean you can’t live a somewhat normal life, it doesn’t mean you can’t live a happy and fulfilling life. There is such a negative outlook on this disease so many people and Doctors think if you have O.I than you got to be unhappy and depressed, and yes I can understand if there are people out there with O.I that are like that, cause like I said it isn’t easy and im not going to pretend it is, but I also am here to tell you all and show you that we can survive we can be happy we can have a fulfilling life, I know I DO!!! I have such an amazing family and parents that take amazing care of me and have taught me that with GOD I can do all things, why can I? cause the bible says I can. So anyways I just wanted to give you a short detailing of my life and why I made this blog ill be sharing allot more soon but for now just wanted to get something up finally lol. If anyone has any comments or questions about me or about O.I than please feel free to ask. and anyone that does read this blog GOD bless you all. P.S please excuse my spelling and grammar errors, and I apologize if its kind of hard to read some of this. I never was fully able to finish school so I am not the best when it comes to spelling and grammar lol.
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