Vyra's Story

Im 20 and I cant remember living one day without pain. I cant remember one night where I havnt woken up gasping for air or with seering pain going through my body. I was only eighteen months old when I was diagnosed with Juvinille Rehumatiod Arthritas still have it to this day my fingers right now as I type are swollen and ache. I was eleven when I was diagnosed with SLE Lupus they after 3 months of misdiagnosing me finaly found the fluid that was drowning my heart and lungs enabling me to go through months of not being able to breath eat or sleep and that was just the inital diagnosis. I was put on prednizone to help with the fluid only it didnt just help it also damaged it lowered my dencity in my bones so by twelve I had already fractured my back twice,..lower vertabra and hairline fractures in my feet two more times fracturing the same vertabra to go before the calcium infusions stopped my bones from breaking. I gained alot of weight that nine years later I still cant work off and it kills my arthritas sitting standing even just sleeping is painfull with the weight putting extra pressure on my joints most nights making my body go numb and tingle. Ive had constant and painfully costacondritas (swelling and inflamation of mussles in ribcage pushing aginst the ribs) sence I was eleven a sideeffect of lupus and stress. Ive had full body rashes constant fatigue and nausia, Extreme migrains, biopsy after biopsy pain after pain flair after flair and all to deal with on my own sence I was 15 when I was out on my own battling everything plus struggling to keep a roof over my head not wanting to make anyone deal with the situation but the one who had no choice, the one forced to,..me. Im 20 still in the same situation only with even more pain and trying to find help to cope mentally and physically I am being told at least a year wait or more. I need help now but I dont even have doctors that listen much less help. My disabillity is all internal inless you really know me or see me home curled up into a ball shaking throwing up and crying in pain youd never know I look just everyone elts day to day. People dont believe im sick or do and dont understand. I Live in new brunswick canada and I have never even met anyone elts with Lupus before there is no help here but im too sick to just up and go. My family tries to understand but none of them have cronic pain and they like everyone elts have a hard time understanding. My mother gave up most of her last nineteen years to care for me and only in the last 7 years has been able to go back to work but only sence I left home has she had time to do so. My family has alot of stress and fears when it comes to me being sick and want to help but feel helpless so this leads to depression and its hard for us to get along because although I am know and feel that I am sick I want to care for myself have my own life and live on my own but they want me home so they can watch over me. Most times I want to just get in a car and drive far away find others like me find a place where I can get help but im to sick pain wise emotionaly everything I feel like im dying slowly as I get sicker and more pain I feel like more of me is gone, just disapears. I am right now on medical leave I cant keep a job for more then three months, I love working and I am a hard worker but three months is the longest I can go without a flare right now I am fighting for disability assistance and low income houseing but its a struggle. Theres no help here All I can do is tell my story and hope people learn that there are people like me who look normal but are in pain and sick that understanding happens not pitty. And hope that I find a lupus center or someone who can help get rid of the pain for good one day. I after going through everything and still having no options I cant work I cant even get a Doctor to listen long enough to find proper treatment I feel like my only option is to admit my self to a phych. ward just so i can get someone to listen and maybe help me find out where i can go to help with pain with independance. Right now I have no home but I do have alot of pain. It bugs me that i feel like its my only option but i cant think of anything elts. Im so sick and tired and tired of being sick. Im depressed and alone and in pain with no anything to turn to. What should I do? I have a cronic termenal non curable disability and although there are many others like me I feel alone and dont know how to fight to live other then keep up on medication which are costing 400$ a month give or take pain killers gravol cold medication and anything elts I might need with my compramised ammune system. I cant even afford vegtables or vegtable juice to give me extra vitamins because of my lack of money home and job. I may no longer be in a wheel chair, I may not show my disability physically inless I have butterfly rash I may not be bed ridden or living in the hospital but I am disabled and getting worse by the year with lack of help for people like me especially in smaller citys and towns we need more awarness more medical funding for resurch more help for houseing and medication costs income and disability assistance. It may not seem like much but when you have an illness that makes you proud when you have enough energy to wash your hair its hard to have any gainfull employment and just because the public cant physically see it doesnt meen we dont need the help.

Vyra Taylor