Waiting For The Dawn To Appear

Sickening in my stomach rise, the pain spread far and wide.

Gnawing down deep inside, aching like you can not explain

Pain surpassing your every human frame.

Head exploding in sharp notes of terror, you feel like sheer horror.

Screams come to mind, but if you speak you know no one will understand.

You sit alone in your own sweat, blood, and tears.

You sit alone waiting for the dawn to appear.

Thinking how could someone so young be so sick?

And yet, how could they carry on with hope inside of them?

Just waiting, with hope and life, waiting through the painful hours of the night.

Waiting for the dawn to appear, I spend my life waiting for the dawn to appear.

Her Faith Is Strong

Tiring was these times for her yet she continued on her way.

Restless were the nights she saw the demons fighting her each day.

Painful were the thorns in her side as she wrestled every day.

Yet she carried on, being, believing in God, keeping high her faith.

While others laughed and mocked the way she was.

She knew that there would be better days.

Every curse they snare upon her, she rebuked it and went on her way.

Strong she was inside of her, yet weak her body she lay.

Even though the disease was affecting her.

She continued on her way.

Knowing that God, was good and faithful, never leaving her side.

Knowing that a crown he'd put on her when her race of life was run.

When others betrayed her, God soon became her best friend.

While demons attacked her, God gave peace to her in these times.

When the hours were long and the pain was too much, God soon made a way for her.

When everything comes crumbing down before her, she holds fast to God faithful hand.

God Does Heal

First, I don't think God puts stuff on us. God is pure and holy he doesn't cause bad things to happen. I believe that because with man there is sin in the world, and sin brings conquesences. If anyone is to blame it's sin and the devil. I never think God has brought anything on me. I feel the opposite. I could have never made it through without him. When I was little well I had a horrible childhood. The sickness was undiagnosed then and I would be sick and no one knew what was wrong, causing problems with me. It affects the way I think, like I get paranoid sometimes, hysterical, anxiety attacks, it also causes diharreaha, then constipation, blood from rectum, etc. I've had 2 colonospy's in my life and I'm still in my 20's, I have also had a semiosopy thing. Some horrible tests done, that I never want to have to do again! What feels like hundreds of blood work, needles, mri's, cat scans, x-rays, you name and I've probablly have had it done. I felt like I was going insane, and finally they put me on anti depressants, The thing is I'm not a depressed person, the disease causes severe mood changes, like one minute I will be so happy and feeling a thousand miles high, and the next I feel as though I've hit rock bottom. I'm on 2 100 mg of Zoloft a day. Yeah, nice huh. LOL. I also have xanax as needed, I have a mucsule relaxer, cause certain parts of my body will start twitching for no appareant reason, it also helps keeps the miragrane headaches away. Will I guess there really tension headaches, but there horrible. I also have prescription pain pills I take as needed, when I'm on my period that's every single day of the period, some twice a day. It's horrible. I've been admitted to the hospital because of my period, because my blood pressure has fallen really low and I get week, dizzy, extreme pain everywhere and feel like I'm dying. I can only say that the grace of God has gotten me through them. I remember when I was younger and first started having the horrible periods, I would have to sleep them off with a heating pad, I really needed ten heating pads, but I remember when I would wake up I would feel the prescence of God in the room and could hear church hymns being sung, and I would think to myself God has gotten me through it again. I have felt him heal my stomach when the stomach pain was so sharp and intense like a thousand stabbing knives twisting my stomach apart. I've been prayed for and I have felt God's healing power. I know I'm alive today because he spared my life. I acutally have a death story I could tell you. I was going to die, if not died one night in my sleep, It was like I was about to reach Heaven's doors, and then I woke up gasping for breath and I could smell this horrible smell, like the smell of death, and I knew God had spared my life. So you see, I could have never made it in this life without the healing power of God. I also have head problems as well.

Ok, second my head pains. Like almost 3 years ago I had a very bad car wreck and totaled the car. I blacked out for a second and came too thinking I shouldn't be alive. I know God is protecting me. I had a concussion and have had head / neck pain ever since then. I've had mri's, but they've always been normal. So I just have pain to deal with from that sometimes. A lot really. But I always tell myself it could be worse, I could be dead, totally messed up or worse. I know that God has always been with me and healed me and spared my life. I have huge faith in God and God's healing power. I believe the verse that says if you have faith as a grain of mustard seed you can move mountains, or something like that. I have a lot of faith in healing from God. And it's because I've read the stories in the Bible and believed them, then knew God could heal me, and then felt his healing in me over and over again. So even though I suffer, God never promised we would have it easy, and I think sometimes we bring things on ourselves, like I blame only myself for the car wreck, if I hadn't looked down for that split second I wouldn't have hit the car in front of me when they stopped suddenly. But anyhow, so I don't give into the notion that God brings us pain, because I believe he doesn't, I believe that he helps us through the pain, we just sometimes need the faith to believe he's capable of anything, even healing something like what I have Porphyria, any other kind of disease or even aids, something there's no cure for, God can do anything, just pray and believe and it will happen. That's how I look at things, God will take care of me. I have very strong beliefs on God and his healing power.

A Psalm in the Night

A Psalm in the night. That’s all I have to offer you is a Psalm in the night. My thoughts betray me, my mind is heavy and I am sleepless and frightened. Like a child of the dark, or of a monster under her bed. I am alone in a dark place and it scares me, no lights, and no lights about to guide me out of this maze of insecurity. I am frightened, I feel helpless, but I know I’m not alone, not completely, because I know that through it all, in it all, and above it all, I will always have God with me. He is my protector of the night, my guide to the new light. The only one who can save me from losing all grips on reality. He is my only hope. There is no cure for this disease, which plagues me day by day and slowly wears down on the particles of my being. Man cannot help me anymore. I can take no more medicine, I can find no cure. My only salvation is in God. I feel God making me stronger and leading me day by day. And I know that if anyone can cure me or get me through this, it is God. He is freeing me from this prison cell I’m in. There’s no bars, no doors, but I am trapped and cannot get out, but my help is coming, my help is coming in the name of the Lord, Jesus Christ. Jesus thou son of David have mercy on me.

Fusion

Infused by blood that's against me.
Tortured by pain that's inside me.
Bruised by others lack of understanding.
Stuck in a world that don't seem to care.
Trying to understand and make some sense of it all.
Falling through the cracks of my misunderstanding.
Wondering when this disease will be cured and quit plaguing me.

But knowing that God is always with me, and understanding that
He'll hold my hand and guide me.

I can carry on for Christ!!

So you all know I have this rare gentic blood disease. And being that, it can cause me a lot of pain. There are days where I think I'm going to die because the pain is just too much for me to bear, it's too much for anyone to bear. It's as if I'm being operated on alive, and there are sharp knives stabbing me all over my body. And I pray to God for mercy, and He always shows me mercy. But one thing that gets me through the pain and suffering I go through since my disease is one of the most painful diseases out there. When I'm being attacked by the pain I think Christ died on the cross for my sins, all are sins, if He can bear that much pain, more so than any human would ever have to bear, surely I can get through this. And Jesus by the mercy of God gets me through it. Cause I know that Christ beared a lot more pain than I'll ever have to. And He always has and always will see me through my hour of pains.

Painful Accommodations

Wiffled by pain inside myself. Stuck by pricks of undefiend health.
Traveling in labor of no apparent kind, sharp knives stick, point, and grind at my insides.
Wallowing in ballows of pain, lights going out on a clear day. Spots appear and my eye sight fades as I grope for the bed and some relief of any kind.
Pain pills won't do it, heating pads can't help, I'm grumbled into a gigantic painful mess.
God, I cry in my desperation, please save me from my hour of these painful accommodations.
So I wait on the Lord, as He is my strength and slowing I regain sight and speech. My mind clears of painful thoughts, my body frees of painful pricks.
I know the Lord has been merciful to me once again. I know the Lord has saved me from myself, my pain, my mess. Thank you Jesus!

I Am Blessed!

I am blessed! I was thinking on my illness and reading stories of other people with the same condition as me, and I truly am blessed! Sometimes it's hard not to feel sad or frustrated about having a rare condition, because it casues so many problems. But, for me when I was sick the most I turned to God. And I always turned to God, I still turn to God to this day. Doesn't matter what you believe about God, the fact is He healed me and He continues to heal me each day, it is a miracle I have made it this far, it is a miracle He healed me when I was my sickest and about to die, it is a miracle just to have life. Anyone whoever experienced a death experience knows not to take life forgranted, your blessed to be alive and any moment could be your last, so don't waste your time here on earth, or you may end up to regret it. But, I've come so far in the last few years, and God has contiuned to heal me over and over again. I am so blessed that I do not have the horrific symptoms I did 10 years ago, I am blessed God took them away, I am blessed I'm in mimanl pain compared to what I was before, I am blessed!! Have faith and you shall receive!

I do NOT blame God!!

I too have gone through the grief process with having porphyria. I went through the why me part, to the I can get over it part, and the Denial I don't have this part. To the God can heal me and He did so I can live with this part. I understand that it is necessary to go through the grief process with any kind of illness really. Because you have to go through or at least it just seems like you do when your sick like that. Some sort of grief process anyways. I started mine when I was in junior high. After I had been really sick and it wasn't going away. And I think I just come to terms with it just this last year or so, cause I would go through my denial phases where I don't have this, I can do anything stage!! WRONG! Anyways, I agree God does not put on us more than we can handle. But I also have a weird outlook on things myself. I don't think God gave me this diease, I don't think God gave the lady at my church cancer, I don't think God made any little baby be born deformed, I don't think God causes anyone to commit a crime, I don't think God is reasonible for any kind of sickness or cruelty in this world, rape, murder, etc. Because God created a good and perfect world. He created man and woman good and perfect. And WE chose to sin. With sin came sickness, and death. It wasn't God who created those things. We did. The person who murders someone is responsible of their own actions, no body else. You can say he was tricked by the devil, but even the devil didn't comit the crime, that man did. The devil lays all kinds of temptations for everyone, he alone brings in bad to this world, but the people who fall into those tempations are responsible for their own falling, their own actions and sins, no one else, not even the devil. So to me God did not make me with any kind of sickness. He made me a perfect body. As for gentic disorders well my theory is that through each generation with sin and coruptness they some how get worse. Like our body mutates or something. I know it sounds weird, but I have a HUGE problem with people who blame God for ANYTHING, sickness, death, a crime, anything. Because it's NOT HIS FAULT!! He didn't create the crime in this world, people did. And with sin comes all sorts of other things. So even though I do have a rare blood disease, that is uncurable, to some extent untreatable, and has already tried to take my life, and may yet try to take it again, I DO NOT and WILL NOT blame God for it, because I know God did not give it to me, sin did. Look on the positive side of life, there's always a silver lining. I guess no matter what happens, no matter what the devil throws my way, no matter how sick I get, no matter what people done or will do to me, I will always belive in the goodness and perfect grace of Jesus Christ, and I will always know that God is GOOD and no bad comes from good. And that's how I know He died for us, that's how I know He came to save us, that's how I know I had to put my complete faith and trust in Him and NOBODY ELSE! He alone gives me the strength each day to even get out of bed, He alone gives me the happiness I feel through the storms I face EACH day of my life. He alone gives me grace to slid through the storms and overlook all the bad that seems to come my way, it's HE ALONE that GETS ME THROUGH EACH DAY!!!

Porphyria the unkown disease.

Porphyria is a rare disease that starts with your blood. There's a substance in your blood called heme that makes porphyrins, somehow porphyrins contribute to blood flow. People with too many porphyrins have porphyria. Porphyria causes a lot of different problems. There are eight different types of porphyria. The main ones are the acute porphyria's. In these porphyria's there is severe abdominal pain, I like to explain them as sharp stabbing knife pain, or like having an operation without the anstethia. It's not little stomach pain, it is at times intense unbearable pain. Then they have sensitivity to the sun. Something about the rays of the sun affects people with porphyria. I have porphyria myself and I know that when I'm out in the sun too long I start to feel strange and I can't think clearly and I start having the stomach pains. It brings on a whole new world of pain and sickness. Also there are mental side effects and nervous system affects. Such as worry, fear, and nervous side effects, like panic attacks. Thankfully I know a God who heals and has kept me sain throughout all these years. I use to get a horrible fearful feeling that would come on all of a sudden and I'd feel like the world was coming to an end or like I was going to die right then and I'd be hysterical. I'd wake my mom up at night and have her pray for me cause I was so hysterical. Also I have a lot of anxiety and panic attacks. I get real frustrated and start feeling all anxious and then I start hyperventilating and feeling hysterical. There are a long list of medicines that porphyria people have to stay away from. Also there is other triggers such as sun light, smoking, alcohol, and certain foods (which may be different in each person) that will cause attacks. Menstrual cycles for females will cause attacks. Mine were horrible. Right now my periods are all messed up and I don't have a period. But when I use to I would pass out, my blood pressure would drop really low, I would have horrible pains all over my body, Not a place in my body didn't hurt, I would throw up and be dizzy when concuss. It was horrible and on occasion I have been admitted to the hospital because of my periods and I passed out in the doctors office more than once. There's a lot of things that can go wrong with porphyria. Most people do not understand what it feels like or what people with porphyria goes through on a daily basics. It's difficult to see friends and family who live successful lives and don't understand our circumstances. When were trying our best but are shot down by our own blood making too many porphyrins and causing us to have horrid pain beyond description and panic effects. And they wonder why it's hard to hold down a job and rise to the top like all the other successful people do.

Becoming your life

Most of us have goals or plans for the future. We want to succeed at something. My dream has been to become a famous writer. And to tell people about Jesus through my writing. Sometimes it's hard to finish or accomplish your dreams, especially if you have other things wearing you down, like a rare disease. But no matter what happens you have to push through the mud and muck and make it to the other side. It's finding a way to become your life and not letting your life become you.

Living with Porphyria

Well I'm 26 years old and I've been dealing with a rare disease called Porphyria since my 7th grade year. My stomach hurts a lot. It's hard to put things into perspective when your seeing a thousand different possibility's for your life. It's like being in a crowded room and seeing no one. It's a horrid disease and I have a hard time coping with it. I pray and take it all to God, and if it wasn't for that I think I would truly be mad already by now. But this is a unique disease, it has to do with the blood and heme in our bodies, mine produces too many porphyrins aka leaving me with porphyria. I don't understand this disease. It's the worst. It's like an obssesion that you try so hard to push out but won't go away.