My Life, My Battle Each Day With Arnold Chiari Malformation Disease 

 


Well you might be wondering what chiari malformation disease is exactly well it’s simple our Brain’s are to big for our skulls


We are born with the disease it starts off for us inside of our mother’s womb 


Then the pains of everyday life can and is horrific on a chiarian each day a chronic diseases person lives daily is unrealistic 


It most people will not have no symptoms of chiari malformation disease until 20-40 and then some may not have no symptoms of chiari at all 

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but i will do what i have to reach people about chiari because it kills to many people and leaves a major hole in your heart once they are gone because it can because of other complications that is related to Arnold Chiari Malformation Disease like EDS POTS  and also it can be hereditary in families it can be passed down from a mother to her children and they didn’t release his not till a few years ago from the Mayo Clinic and Duke University and that it is hereditary

 

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and families and I would never want my kids to suffer the same pain and the Fate that I’ve had to suffer my whole life because it’s unbearable most days but I’m still here for a reason my purpose has not been filled yet I will continue my journey as long as I am possibly fit and able to do so but I need to bring as much we’re in this as I possibly can to Chiari and and chronic illnesses or chronic invisible illnesses or invisible illnesses and my symptoms can vary from having a migraine headache on top of a regular headache each day that I my feet Hit the Floor my skull swells my neck swells I am completely deaf in my right ear I have 2% of hearing in my left ear I’ll do to Chiari and my limbs are hot to the touch and tingling and burning to the touch sometimes they feel like dead weight and you have difficulties breathing due to the fluid build up in your lungs and throughout your body you have visual disturbances you have ringing in the ears you have heart populations and you have dizziness you have difficulties swallowing because of the air way narrowing and you have difficulties using the restroom and then when you do use the restroom it feels like your spine your kidneys your liver and even your lungs is going to rip out of your butt and it takes your breath you can’t even cry out in pain because it hurts so bad and yes doctor say surgery it helps with the complications and side effects of Chiari but it’s not a cure it only helps with the pain and then your skin gets a little fragile you have blood spots come to the top of your skin you’re very easy to bruise you may go to bed and then get up the next morning I see bruises and bruises on your body that wasn’t there before you went to sleep and you wondering to yourself how did this get here and have no earthly clue how it happened and how it got there and see this disease doesn’t only effect adults it affects teens it affects babies it affects animals yes and I did say animals because the first animal that was operated on was a lion you can pull it up online by putting in Chiari surgery on a lion and see the pictures and I think that there’s a video The Lion being decompressed so as this disease is very important to have at your because she is not only affecting humans is also affecting animals that we needed to or we hold walks Across America to have funding to further the research and if you ask me somebody that lives with an incurable disease that feels like the plague has hit them and that our bodies is like the rotting corpse you would want to chew or two you know not only for yourself but for other ones and for teenagers and for your children and for your grandchildren but in the you know man for Animals as well because we’re God’s creatures and we deserve a chance to live without pain and that’s the God’s honest truth we all deserve to live without pain but will it happen in my lifetime highly doubtful because Chiari reminds me of cancer and it just takes over your body until you lose bits and parts of your memory your short-term your long-term memory and Alzheimer’s is also associated with Chiari my mother died from Chiari my older brother Rob died from Chiari my mother was 61 my brother was 37 it’s a heartbreaking Factor but it’s time that people of America and world wide that cares about other people steps up and do something because we do all we can I even make products for chiarians and send them to them for free of charge with Chiari logos on them because that’s just me that’s one of my ways of giving back to my brothers and sisters in the Chiari community and see I’ve been living with this fear and wondering and doubt that would I even make it to my next birthday which in July was and I was wondering whether or not if I was going to actually make it to that birthday because that means I would need pass a milestone the age of my brother passed away you know it’s just that the little fears that has people on the edge of their seats wondering whether or not if it’s going to be our last day to see our husband or wives or children or grandchildren are Mom or Dad’s a brothers or sisters biologically or not whether or not if this will be the last day that we get to look at this world and really nobody really knows our pains if you did you wouldn’t like it because it hurts like hell excuse my French and I live with these factors since 2009 that my neurosurgeon and my neurologist told me of my husband for me to live my life the best way I can I mean to have a death sentence slapped in your face early one morning before 9 a.m. That’s something that will haunt you and affect you for the rest of your days and yes I’ve been to other neuro surgeons I’ve been to other neurologist to have other opinions because I am not willing to accept that opinion I will not accept that fate I am a conqueror I am a warrior I will continue my best in defeating Chiari until my body gets so frail and weak until it cannot push on because with Chiari I have seizures also I have strokes and I’m just waiting for a big stroke or heart attack to hit me that I won’t recover from that will leave my family and friends and devastation and with such sorrow and grief because I’m one of a kind and I don’t complain about my pain that much I’m really hardly at all I just suck it up and go on with my day or night I don’t like taking pain pills any kind of Narcotics because I have seen too many of my Chiari and friends and sisters and brothers and family accidentally take over doses because them forgetting​ due to their short-term or long-term memory starting to fail them so yeah I just don’t like to take a whole lotta pain pills I really try to stay away from those me and might take Motrin or ibuprofen and then if I don’t help you know I go and do acupuncture just relaxing stuff like that to help ease and Soothe My Body 

 

And so you wouldn’t want to be the one that would have to explain it to anyone that someone lost their lives due to Chiari because that’s a burden that we carry we will do it we share obituaries of our fallen Warriors so that they will see who has lost her battle that their war was not one but we will continue to try to find a cure but as they are not here there at peace they have no more pain they have no more sickness they have no more nausea only thing missing is them but we all know that in the end we will meet again in the Heavenly land and even though they may not be here they are missed they are loved their thought about we still look at their old pictures I’m still talk about them how much we miss them wishing that they was here the special moments that we shared the chit-chat the talks being there when you need a friend to have a shoulder to cry on where there but now we’re the ones left here with the despair until we meet again but that’s okay my friend will continue to conquer and try to defeat we will not go down without some kind of success to a cure for Chiari

 

And see sometimes chiarians are also born with spina bifida that is associated with Chiari they are born sometimes being paralyzed and some of them has scoliosis which is curving of the backbone they have fibromyalgia which causes a lot of pain and the muscles I’m giving every explanation that I possibly can all the Intel that I possibly can to educate people and make them aware of this brain disease that is very rarely heard of because it’s that rare and I don’t know if it would have changed anyone’s mind if they knew what the outcome could possibly be being hereditary and families if they would have had any children biologically of their own or what if they would adopt in me I have adopted kids I also have biological kids of my own and only thing I can say is is that I pray that my biological kids never has this rare disease because again I would not want them to suffer and live in misery like I have all of my life but when I hit my twenties is when everything went downhill I started blacking out I took I fall off of a porch that was how cracked my skull matter-of-fact on some rocks and cement blocks down below but I gotta shook it off and I seem to be all right and well I went on about my day and you know my friend kept on asking me are you okay do you need to go to the hospital I said sure I’m fine I’m just don’t if I knew then what I know now I think I went ahead and got rechecked to see how bad my Chiari had gotten because I found out about it when I was 15 and since then my life has dramatically changed I don’t take anything or anyone for granted I appreciate everyone I love them for who they are it doesn’t matter what you look like or how tall are y’all are the size or you shape or what if your fluffy or you know whether you know if you’re weird looking as people would say I don’t judge the book by the cover I judge the person from what they are inside and the way that they treat me and that’s reason why I am trying to do all I can do to find a cure and bring awareness to this disease because living with it not only me but other people like me is a holy tornado and hellish nightmare that has came from hell to torture us as long as we live on God’s green earth and does anyone in the world that might be reading this right about now do y’all think that y’all could live alive like this and have all the factors and outcomes and the doubts lingering in your mind while you’re suffering and torturous hellish pain and sickness daily that makes wish sometimes for death to hurry up and take your life but that’s the easy way out by wishing for death to hurry up and take you life and then if you have any kind of blunt head trauma to your skull throughout your life could also if you are at carrier or if you had the disease in your body that could be some of the reasons why that could be some of the reasons why I did it may be showing up and your body if you had blunt trauma to your head 

 

 

awareness 4 chiari

 

©Tina Glover All Rights Reserved 2017 12/02/2017–And not allowed to use any parts of my poems writing words thinking thoughts stories quotes without my consent and knowledge to do so and it’s greatly appreciated and thanks in advance y’allhola-beach-club.png.png

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