My porphyria story - Sick Eyes

I have a rare blood disease called porphyria. There are eight different kinds of porphyria. I have one of the acute porphyrias called heredity coproporphyria. It starts in the blood with the heme and the heme makes porphyrins. People who have porphyria have too many porphyrins and that causes us extreme problems. I first had a porphryia attack after I started my periods. My periods was what brought on the disease. You can have porphryia and it lie dormant and you never experience symptoms until a trigger comes along. My trigger was my period. I use to have horrid periods where I would pass out and have sharp tingly knife pains all over my body, be dizzy, throw up, my blood pressure would drop really low and at times I was admitted to the hospital.It's hard to explain. But there is a lot of pain involved with porphyria. It causes stomach pain, back pain, side pains, just anywhere you can have pains from porphyria. And if you get something like the flu it will make the porphyria worse and it takes you longer to recover from it than normal people. Porphyria is a rare blood disease and needs to be addressed. Not very many people understand how porphyria works and how crippling it is. For me it's very frustrating. Because I have family and friends who do not understand what a struggle I go through on a daily basics. They wonder why I can't hold down a job, when I feel like crap and I'm throwing up my instentines. They wonder why I'm not normal when my blood produces too many porphyrins and my stomach hurts like a thousand stabbing knives. They wonder why I can't be on the fast track. I wonder why they can't understand my sickness why they can't see I'm trying my best. I try to go to school and I get sick and in the hospital. I try to work and I get sick and can't. It's very frustrating and annoying. I have no time for people who don't understand what I go through. And who critizes me over something I have no control over. I wished I could be normal and have a normal life, be graduated from college and have a job. But for me trying to get through each day is a challenge. The more I try it seems like the harder it becomes and I'm tired of people judging me. When I was a lot sicker than I am now, I had more attacks more often and I was really bad off. I always had faith that God could heal me. I prayed and prayed and went to the altar at church and the preachers prayed for me. And I know God has speared my life and let me live again. Well I kept going to church and being prayed for and one night while the preacher was praying for me I felt like an invisible hand reach down into my stomach and turn my insides around and make me whole. After that I stopped having as much problems as I was having. I stopped having the horrid periods I was having and I started gaining weight. I could never gain weight and I looked sick from the pictures I have of myself back then. I knew that God had heard my cry, and I knew that God had healed me. Well it wasn't the only time God healed me, He's healed me more than once. But anyways so for several years I got better, I was going to school and working part time. But then things got bad. God had healed me of death and healed me of my sickness.I thank God each day for healing me when He did. I just want people to know more about this rare disease and to understand how bad it can affect people. It's not easy living with something that is crippling and causes you to hold back on your life. While the world goes on around us were stuck sitting on the sidelines while the rest makes fun of us. If you had my disease you'd understand how I feel. Until the day that God completely rids me from this disease or calls me home I still have it. And want the world to know porphyria is no laughing matter.