Need a Cure

Hi all! I'm so not good. Well I'm ok now, but I had a horrible time with my period this time. Ok, so last week I kept feeling horrible and like I was going to start, I even got all week and dizzy in a store. And I kept spotting so I kept thinking I was starting, but never did. So finally Sunday night or Monday I think I started, but on Tuesday things got bad. I woke up with bad cramps. So I soaked in the tub thinking it would help. Then I barely got out of the tub threw my clothes on and had to lie down before I hit the ground!!! So I get in bed and everything hits. The horrible pain, cramps, feeling like I'm going to die cause the pain is so unbearable. Then I start sweating everywhere, like really bad, I do that on my period when it's really bad, I just sweat terrible. So I'm soaked in my sweat, pain everywhere, my dad comes in and I can barely talk and I'm like heating pad, so he gets me a heating pad and I'm laying there thinking a bunch of things, one is (since Porphyria is caused by excess Porphyrins in the body) I'm thinking it would be nice if they made a heating pad that took out any excess Porphyrins so I wouldn't have to go through this. And why can't they make a cure. I'm too young to die. Anyways, so things don't get better yet. I keep feeling like I'm going to throw up but I can't get up so when I do throw up guess what, I have to lean over the bed and throw up on the floor, cause there's no way I'm making it to the bathroom and back in one piece. So then I think I'm done and I throw up yet again and this time it's all yellow. Which kind of freaked me out cause I've never threw up yellow stuff before. But after throwing up yellow stuff twice I acutally felt a little better. Then my dad came in again, and I couldn't talk at all so I'm like pointing to the floor, so he goes and gets a towel and puts down on it and I thought he'd bring me a wet wash cloth for my face full of puke, but no, so I'm like pointing to my face so he's aggravated, but I can't help it I'm like praying for dear life here, so he gets me a wet wash cloth so I can wipe the throw up off my face. Then I start feeling better and fall asleep. Then a couple hours later I wake up and the worse is past, but now I'm like all freaked cause I hate having the bad bad bad periods, I thought those days were behind me, I thought I just had bad bad periods, not bad bad bad periods. And so now I'm really back into reading all about medical stuff which I barely understand but I need a cure so bad I don't know what to do. Uggggh. I feel like screaming! Doctors please find a cure. But don't worry I will keep on trying to figure one out myself!!

~Rachel ;)

Suffocating Inside

Lost in my mind of confusion, suffocating inside. Looking for the answers I can't seem to find. Wondering in a valley of sadness, not even realizing I'm here. I know I'm suppose to be strong and follow the Lord. I'm doing the best I can as the storm pulls me into each different direction of it. I find myself in utter chaos, just swimming around and around. Then remembering I can't swim, so I start to drown. I'm drowning in my confusion calling out for help. Lord I will gladly bear any Cross you give to me, but just please give me the strength to overcome this pit. I know that somewhere I will touch the life of someone, and though I have to undergo this horrific illness, I pray it won't be too painful. Through my sufferings I bear, I wish I will find a cure so that some other poor soul may be spared the pain of this disease. My mind is set upon a cure, I can see it in my sights. I just can't quite grasp what it is just yet. But, I'm praying it will come to light. I'm determined to find a cure for this disease, I'm determined to find it in my lifetime!!!!!!!

Finally a Cure???????????

Finally there is suppose to come a cure out in 2010 for Porphryia. While I don't know the full extent of this cure, what it is or how it works, or even if it's for all types of Porphyria, I am hopefull that maybe one day I will feel "normal" like the rest of the world?? I am always sepekial when stuff comes out. I want to wait a few months or so and see how other people do with these new found cures before I jump into the action. If something terribly goes wrong, I don't want to be the one it goes wrong on. Apparently they are testing it out now, for two years until they release it. So hopefully it will work as I'm praying for it to. If it does, I will be so relieved that maybe I will be pain free and not have so many Porphryia attacks. But what about the last 26 years of my life that is down the drain because of Porphyria? Who knows, I guess I just have to start from scracth and pray for a new life without Porphyria and without lots of doctor visits, hospital trips, pain medicine, horrific pain, etc. And maybe the rest of my life will fall into place, one can only hope and pray for that. I started crying the other day in church when the preacher said there would be a day that would be when Jesus would call us up to Heaven and change our mortal bodies to immortal bodies. And as he was saying this I suddenly realized that there would be no pain, no heart ache, no pain meds, no hospitals, I would be pain free. I can only hope and pray for such a day..................