Wednesday, June 18, 2014

What I miss the most, Why a Rare Disease Stinks





Life has been mean and unfair to me for years now... I have a  million different emotions and opinions of it all, all my own... Living with a rare disease stinks, that's probably my biggest feeling right now. Why does it stink? ...#1 I miss having fun and living a life (as above shows me and my sister messing around having fun) A.) no doctors know about it. B.) They don't even know what the cause of my symptoms are or why they are even happening. C.) There are no exact medications for POTS/dysautonomia, all the medications used are borrowed from other diseases. D.) because doctors are so unaware I have gone 8 years without help. D. (part two) I got and still get called crazy or anxious or I am just simply depressed which is pure ignorance. E.) I am not in any serious danger really but my body thinks it is and I feel so awful, but I don't get medical help from specialists until patients in worse shape than me get their help (I totally understand that) but it still really stinks when you are miserably suffering day in and day out. I feel like hey don't my symptoms matter? Don't I deserve some form of life? besides being at home day in and day out miserable... It just has been bleak. My heart is hurting but I do know trials bring the biggest blessings in life, that being said my trail must not be over because things are not okay yet. I am trying to give my burdens to the Lord but it is hard, I am an overachiever: and that applies to worry I overachieve in that too... haha  the Lord is understanding and I am trying... things will be easier one day, today isn't that day but I know that day will come. I am in fact never alone. and I hope if you are out there dealing with any form of sickness, that you know I care and I believe in you and that prayer works... pray heavenly father hears your words happy or broken-hearted. When no one is there and you feel all alone and no one is there to talk to, he is. When no one can fix you because they simply can't no matter their words of encouragement....he can. he is there. He will give you strength daily. I used to pray, "Lord I need thy every hour" now I Pray, "Lord I need thy every minute"... and some awful nights I pray, "Lord I need thy every second." He is there he sends me hope and help. When I hit rock bottom and feel as if I can not take another second he doesn't necessarily take my sickness away but he does send me strength and comfort. I know he is there no matter what. Heavenly Father loves each and everyone of us, we just have to let him, trust him, and have faith that he will make everything okay.