Wow, This made me cry. If you have Chiari Malformation or know someone who does, this is a must read: Written by Carolyn Gibbons My name is Chiari and I am an invisible chronic illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause your hea... d to explode and your vision to dim. Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Try to have fun now! I also took Sleep from you and in its place gave you Brain Fog - Confusion and Disorientation. I can make you dizzy and sick; fill your ears with constant noise and a whole host of other things that no one else believes. Oh yeah, I can make you feel anxious or depressed too. If you have something planned, or are looking forward to a great day, I can take that away too. You didnt ask for me. I chose you for various reasons and Im here to stay! I hear youre going to see a doctor who cant get rid of me; Im rolling on the floor laughing - tell him to keep trying! You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, told you are suffering from anxiety or depression, given pills that make you tingle, stuck with needles, scanned, and when they get really desperate theyll drill holes in your head. Youll be told to think positive while being poked, prodded, and investigated by medical students, and MOST OF ALL not taken as seriously as you feel when you cry to the doctor how depressing life is everyday. Your family, friends and co-workers will listen to you until they just get tired of hearing about how I make you feel, and that Im a debilitating disease. Some of them will say things like Oh, you are just having a bad day or Well, remember you cant do the things you used to 20 years ago. Some will talk behind your back while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a person, and cant remember what you were going to say next! In closing (I hope to keep this part secret) I guess you already found out…the only place you can get any support and understanding in dealing with me is with other people with Chiari.
Posted on: Sat, 10 Jan 2015 20:35:30 +0000
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