Petition for a Cure!!

Please help by signing this petition for congress to support more research for Porphyria and other genetic diseases. Time to find a cure! The time is now! Who else besides me is sick and tired of waiting around for other people to do something about our illness? It's time to stand and say we want a cure! Please do more genetic testing, more scientific research to help us find a cure. If your with me please sign. Thanks for your help!

Sign Petition

25 For Life!

So last month I did it! Yes, I finally turned 30. And in my old age of middle aged crisis I have come to realize one thing, from now on I am 25 for life! Yep, if you ask my age 25, every birthday after this I will be 25, When I get married and have kids *if* and the kids are all grown I'm still 25!!!!!!!!!!!! You hit a point where you realize that your 30, 30! Not young in your teens, or in your 20's, but 30! And it just hits you, where has my life gone? So now maybe I am officially 30 but I don't think like I'm 30, my mind is still somewhere in the twenties, my body doesn't look my age, and if it wasn't for my sickness I wouldn't act my age either! So what age am I 25 for life!!!

Fourth of July Thoughts

 

“The care of human life and happiness and not their destruction is the first and only legitimate object of good government.” - Thomas Jefferson

Happy 4th of July!

The thought above was on facebook 

Here are a couple I came up with.

When we forget ourselves look to the men and women who died to give us our freedom and be reminded of all the things we take for granted!! Happy Independence day!!

 

As for the true independence of life, be reminded of Christ's sacrifice on the cross and know that our sins our forgiven. Happy Christian Independence Day!!

The Runner

Running far and fast, in her mind that is all she has.
To run far and fast, to get away from the demons of her past.
Running ever still, not stopping to catch a breath.
Her life has been a constant downhill. Filled with failure and not success.
No one could understand her pain, the disease she suffered from. 
The emotional pain she felt inside, that she so desperate tried to hide. 
But here she is at a breaking point. 
The demons in her life are gathered to overtake her.
So she runs far away from them, she runs to catch Jesus.
She feels if she can run fast and far enough God will catch her before she meets a ghastly end.
Save me she cries, so loud her voice but no words come out. 
Save me from this maddening hell I live in. Save me from the constant pain and death I feel. Save me from myself.
She runs, so fast and so far, running to get away from the broken heart, the diseased girl that didn't have any friends, the tortured soul that just wanted to be let in, the abandon child that prayed to live, a house divided can't stand. 
Run, run, far away, don't look back and you might be safe. 
In Jesus' arms I commit myself today, my hope and trust lies in him and my life will show that Jesus lives!!!!!!!

Gifts

We all have special gifts that God gave us. Sometimes it takes us awhile to figure out that the thing we love to do the most is probably the thing God wants us to excel in. For me it has always been writing. I started in junior high writing poetry. In high school I wrote a poem book, basically that is a really long poem split into different parts. And ever since then I write on and off. But when it comes to my writing I feel so strongly about it that when I sit down to write something it has to be perfect the first time, and so I struggle to make it perfect. Gifts are things we excel in, they may not always be perfect, but as I am learning it is OK to make mistakes. I can't punctuate right for the life of me. I never could! But I can write a pretty compelling story, even with bad punctuation. And if I didn't have spell check there would be a lot of misspelled words. It's hard to perfect the gifts God has given us. And sometimes I think we focus so much that we set ourselves up for failure. I know I can write. I know I'm good at it. Give me a minute and I can just start rambling some profound verse that I just made up. I guess I feel like I have to use this gift in such a way to reach the world that it overwhelms me sometimes. We need to learn that it's OK to make a mistake and it's OK to not always know what were doing. Just as long as we know that God will lead us through our failures.

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.

Mission Statement April 6th, 2012

I Corinthians 9:24-27

Know ye not that they which run in a race run all, but one receiveth the prize? So run, that ye may obtain.

And every man that striveth for the mastery is temperate in all things. Now they do it to obtain a corruptible crown; but we an incorruptible.

I therefore so run, not as uncertainly; so fight I, not as one that beateth the air:

But I keep under my body, and bring it into subjection: lest that by any means, when I have preached to others, I myself should be a castaway.

Sometimes when your younger certain bible verses stick with you. These few verses are that for me. I remember hearing them when I was in the youth group and that just stuck with me. I thought how interesting that the bible has such an amazing way with words. These few verses talking about running a race represent the race of life that each of us must run. It says that every man that run a race does it for a reason, some to obtain a corruptible crown but for others, like us, an incorruptible one. And how we must keep ourselves in check otherwise when we preach or witness or reach out to others we fail. Basically live what you preach. How cool is these verses? The bible, the word of God is filled with amazing things, some verses are shear poetry, others are inspirational, while others will prick your heart and convict you. Lets remember to read the word of God, you never know what verses you may come across that you didn't know were there, forgot about, convict you so that you will know you need to change something, repent for something, and find God again, or find uplifting words of life.

Mission Statement April 1st, 2012

Every time I read the Bible I find new mission statement that could be easily said were my mission statements of how to live my life. So from time to time I may put on here Mission Statement and the date saying that I found a new mission statement to live by. Here's today's.

Philippians 4:5-9

Let your moderation be known unto all men. The Lord is at hand.
Be careful for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God.
And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Finally, brethren, whatsoever things are true, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.
Those things, which ye have both learned, and received, and heard, and seen in me, do: and the God of peace shall be with you.

Philippians 4:11-13

Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content.
I know both how to be abased, and I know how to abound: everywhere and in all things I am instructed both to be full and to be hungry, both to abound and to suffer need.
I can do all things through Christ which strengtheneth me.


Don't you just love how the bible and God may say something like I know how to be full and to be hungry, something that to human beings may not make much sense. But to God all things makes sense, and if we can strive to know of God more each day, then the impossible that we believe to be impossible, can become possible with Christ in our hearts and lives. Believe to believe, believe in the unseen, the impossible, believe in what others would call foolish, believe in God.

Porphyria: My Breaking Point

Sometimes life tends to be a bit messy. For me it is a constant threat. I try to be good, a Christian, and a light force for Christ Jesus. But so often I feel as if I failed. The disease that enthrones my body never lets me forget my failures, it constantly brings me to a place of pain and frustration, sadness, fear. It seems like I am always sick. Yesterday I went to the doctor and found out I have two different kinds of infection. I got a cortisone shot for the pain only to have an allergic reaction to it. I thought that I would end up in the emergency room like before when I had allergic reaction to medicines. But this reaction was quite different. As if a Porphyria attack such as sharp knives gauged at my stomach, then several hard places, like hard circles in my stomach, sides, back, and legs started throbbing as if they all had heart beats that were throbbing erratically and about to explode. The first thought that came to my mind was my grandfather's death and how he had blood clots all over his body when he died. My worst fear is dying like he died. But I know that his death doesn't mean that it would be mine. Otherwise God wouldn't have healed me when he did and saved me from death when I was younger when the disease tried to take my life. I know that I am here for a reason. So last night when I was sure I was going to need an emergency room, and I started sobbing and telling my mom she prayed for me. And through prayer God heard our cry and I started to feel better right away. I always forget that my mom is very sensitive to her father's death, not long after she started crying as well and I had to console her. Sometimes I try to keep stuff to myself that involves him because I know that it will upset her. But I needed her help at last, I needed someone to pray for me. And so did she need someone to pray for her. See we all need prayer, our worst fears will consume us without prayer, and our sickness will kill us without it. For me prayer and God is the only thing in this world that keeps me going. I would not be where I am today without God. I would not be alive today without God. God is what keeps me grounded. Otherwise the sickness would overcome me and I would not be able to go on. The sadness I feel with this sickness can be unbearable, the emotional turmoil, the physical pain that has been said is one of the worst painful diseases in the world, the battles to be fought are unbearable on your own. No, without Jesus Christ I could not overcome and would not be alive today. Last night I was reminded of the times God has healed me over and over again, saved me from death, brought me back from the dead, and kept me alive to tell his miracles and mercies another day.

 

Word Game

Let's play a word game. I say a word then type the first word that comes into my head, then look at how silly I really am. You should try it!

1) The H sign on roads = Honda (Listen to way too much Beach Boys, I'd never find a hospital if I needed one.)

2) Coffee = Starbucks (Is there any other kind?)

3) Alaska = Paradise (Love cold air, Grandfather pastured churches there!)

4) Evil = Certain Family Members ********* (Won't name names!)

5) Color = Blue, Pink, Purple (Too many to choose from!)

6) Number = 7 (Religious buffs should know why on that one!, 7 is the number of God, because 6 represents how far a man can go on his own, where as 7 is the number of God.)

7) Bible Verse = Psalms 91 (Soothing and calming verse of overcoming!)

8) Country = Israel (The Holy Land!)

9) Food = Pizza (Hey, it's what popped into my head first!!!)

10) England = Twiggy, Mad King George, Boston Tea Party (There's just too much to think of here, Twiggy love her, Mad King George reminds me of Porphyria, reminds me of myself, Boston Tea Party, hello Americans!!)

11) Superhero = God (Who else, of course God!!!!!!!)

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.

Words of Comfort

These words I find to be comforting. There from Phillippians 4:7 KJV

Who could ask for more than the peace of God?

Here is the scripture.

"And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus."

The Psalms of Life

Psalms 24: 7-10

"Lift up your heads, O ye gates; and be ye lift up, ye everlasting doors; and the King of glory shall come in. Who is this King of glory? The Lord strong and mighty, the Lord mighty in battle. Lift up your heads, O ye gates; even lift them up, ye everlasting doors; and the King of glory shall come in. Who is this King of glory? The Lord of hosts, he is the King of glory. Selah."

Lord my life is nothing but a constant struggle. I fight daily to survive. I feel as if the mighty lion of the deep dark place has come and swallowed me up. Sometimes I can see myself overcoming the lion. But others I see myself being eaten alive. Lord the Psalms of my life isn't the happy or uplifting Psalms. It is the Psalms of distress when King David was hiding out from those who would attack him, when he turned to you for help. That is my life. I am hiding from those who would attack and devour me. But I can't hide forever, I live with the enemy daily. I am hidden out at the enemy's house. And I turn to you Lord for help. Some people's lives flow, others have it bad and then it gets good, others have it good and then gets bad, and so on and on. Me Lord, my life is full of conflict, it's a complex of contradictions. And I am lost in a blizzard of nothingness. Save me from this worry, dying, wilting, wondering, confusing, emotionally depriving land.
Lord I live only for you, without you there is no me and my life is vacant and void. I need you oh Lord to survive. I need you to live.