Porphyria Update

This is for all the ladies out there that has Porphyria and horrible periods. I have found a new way to help relieve some of the horribleness on your periods. Tylenol Precise Cream. Yep, rub that where it hurts, most places anyways, and it may sting or burn, but I will say that it will make the horrible unbearable pains better. I found this out today. God of course will help ease any pain, he has always been there with me through these times. I remember when my periods were really bad and I would have to "sleep it off" I would wake up and I could feel the presence of God in the room and could hear angels singing church hymns. And I would know that God had got me through it again. Back then we didn't have pain patches and pain creams like we do today. Just a heating pad, and one wasn't enough believe me. For those who have semi normal periods and don't know what I'm talking about. Think of it like this, you wake up with searing pain through your abdomen, pelvis, sides, thighs, basically everywhere. You go to the bathroom and hope and pray you can finish in time to make it back to the bed, before you pass out, start seeing white spots everywhere, or become so engulfed with pain that it is unbearable. Then you hit the bed and you have to throw up but can't force yourself to get up so you throw up on the floor and maybe a little on the bed, you have blood running down your legs even though you have old granny panties and a pad on. You toss and turn but nowhere can you find any comfort. Your blood pressure drops low and your face becomes white as a ghost, you feel the ghostly whiteness throughout your body. You fear for your life and pray that you will live through this. This is not your typical period. This is a Porphyria attack in period form. Most people don't understand this, you try to explain to them how it feels, but no words could come. You sweat so bad you lie in a pool of your own sweat. You try to talk and you can't, your mouth is dry and you can't form any words, so you just motion with your hands to whoever happens to be there. You have barely just taken a pain pill, everything in your body hurts beyond reason, like searing pricks throughout your veins that has leaped through into your muscles and has now left you paralyzed in pain. And your last and only hope is God. That is what a Porphyria period is like. UNBEARABLE! So I just wanted to share that Tylenol Precise Cream helps a little with the pain for those who need it.

Locked Away Like A Fairy Tale

A lost slipper, long tresses of gold, a sleeping beauty the story beholds.
Lost in a never ending wonderland, dreams awake and nightmares begin.

Just like a princess locked up in a castle tower, a wondering mermaid looking for her place between two worlds.
My story is no different than a fairy tale. Only a happy ending is still to be here.

Caught in a world of mass confusion. I suffer daily dis-allusions.
Living in a prison cell all my own. Locked up in my own body that's true imprisonment.
A blood disease, a curse, and no cure. I live in pain, both physical and mental.
Sometimes I think one wrong step will put me away for life, like they would come and get me and lock me up in a straight jacket.

If I told the world the real amount of pain I was in. They wouldn't know what on earth was keeping me here. They couldn't understand how I deal with the pain. Even I don't know how I get through the days. I can just count it all to faith. The power of God is mighty and the disease small.

Remember this next time you think your life is too tough. Most people don't know what true pain is, sheer horror that can only be felt inside, feeling like your blood is roasting you alive. Lost in a world of science fiction and reality, you never know just what to believe. So I turn to God as my only source of comfort in these things. Only God can save me from a horrible fate. I pray one day there is a cure and no other person has to suffer like I do. I pray that they find God if they are sick too.

Painful days!!

The last few days has been rough on me. So painful. I hate dealing with a rare disease cause it magnifies everything else 10 times to what it normally should be, and no one understands the constant pain I'm in. I will be so happy if they ever come out with a cure for Porphyria. Sometimes I don't think I can make it through any more attacks or painful days, and it's almost feels like I'm sliping away. But then somehow God always reaches down and touches me and makes the pain go away and saves my life over and over again from this horrid disease that's tried to take it so many times. It comes to a point to where you can't even take any more pain pills, because you've already taken enough, and too many aren't good for you. So you just live in horrid pain. If only we had the Pool of Siloam here like they did in the Bible days, I'd rush my tired crippled hurting body to the pool, even though I can't swim, and jump in and let God heal me and completly rid me of this disease. And then pray I don't drown, lol. But life is full of mistakes, bad things, and pain. I guess we just have to shift through the bad and bring out the good in everything. My bad has brought good in my walk with God, it's shown me the healing power of God and how faith can truely save a soul and heal a body, with trust in God.