This is my journey to healing from a rare and ugly disease. I hope to be an advocate for all rare diseases that are often misdiagnosed or worse left to think it is not real.
My Reason
Sunday, June 25, 2023
Every cell in my body hurts!
Friday, June 16, 2023
Again
Wednesday, August 5, 2020
Hunger
Friday, April 3, 2020
A voice for the voiceless!
Sunday, March 29, 2020
What is God going to do today?
Sunday, March 22, 2020
Time for us all to #Countdowntohealing
Monday, March 16, 2020
Healing is for Everyone!
Thursday, November 9, 2017
I get it.
After my amazing healing story that God gave me years before it happened I got very frustrated and even depressed. You think, how can you be depressed when God has done something so amazing in your life? He just showed me it is because I still want to do things on my time when His time is perfect. I will share my story with the whole world, but for now I have to wait until He puts everything in place. Waiting is hard, and it has been difficult relearning how to live. I spent so many years just fighting to survive so now I must learn to live. That is a lesson we can all learn. I tried to sit down and write my book and started on it. I was so excited. Then one evening after babying my laptop, I just closed it and heard a loud crack. It was broken. That really bothered me because we cannot afford to replace it or even repair it. Then my dryer broke, and our air conditioner went out in our fairly new just out of warranty car. To top that off our only bathroom is in desperate need of repair. I started to get really depressed. Then God showed me something amazing. All of this is happening for a reason. I need to wait, to be still and watch what He has in store for us. It is not time to write, so he took my laptop away and made sure I couldn't do anything about it. It is time to pay close attention. He is not done teaching me yet. So God, I get it! I know how much You love me and that You want what is truly best for me, not what I think is best. I trust You! And so I wait....... I will let you know how it turns out!
Thursday, November 2, 2017
For my unborn child
This is for the child I never knew. You were taken away from me with such cruelty. I dream of holding you in my arms, of you playing with your brothers and sister. How could I have know that someone I trusted would decide on their own that I was too poor and too young to have a second child? Sure your daddy and brother and I were living in a 1 bedroom apartment. I was going to college. We didn't have much but all I needed was a test from a doctor to get insurance to take care of you. The nurse thought she knew better. She convinced the doctor it was for the best. I was so young and nieve. I trusted them. The doctor asked me if I planned you or wanted you. I told him you were not planned but would be loved and adored. Why didn't he listen? How could he do that? He took an oath to do no harm. He broke that oath. He took you from me without even asking. Before I knew it or could do anything and you were still with me but my womb was broken. I just had to go home and let you go. I held you in my hand. You were so tiny. I am so sorry I didn't protect you. I dreamt about you last night. I know I will see you one day. Until then know that I love you so much!
Thursday, September 14, 2017
My Story
Wednesday, July 26, 2017
Letting go
This one is a doozi. Once I had my healing I had to let go of the idea that everything would be right with the world because we live in an imperfect fallen world. I had to let go of the idea that everything would just fall into place. After 10 years of being on the couch loosing day, weeks, and even months, I would have to relearn how to live. I work myself to death sometimes and seem to accomplish absolutely nothing. I have to learn to let myself be okay with that. Even though it has been over a year I still have a long way to go. I just have to remember this is a marathon not a sprint. Recently I have had to learn a very difficult lesson. Letting go of things that are out of your hands because someone else made the decision to get rid of things that had precious memories to you but only painful ones to them. If I think about it, it is still so hard, so painful to know so much of our history is just gone. Things you could have shared with so many people. I have told myself over and over that they are just things I still have all of the precious memories. Every time it wells up and hurts so badly I have to let it go all over again. I really hope one day it will no longer be painful. I try to constantly forgive and understand where others are coming from. I always pray for those who have caused me pain until I feel the pain no longer. Getting really personal it worked on the family member who molested me. I can be in the same room with them and be nice and polite. I no longer harbor any bad feelings. Now, I would never leave that person alone with my daughter. Because you learn from your pains in life. But I have truly forgiven them and I guess I have to remember that as I learn to let go of this situation. God truly does give beauty for ashes, strength for fear, gladness for mourning, and peace for despair! I hope this helps you let go of whatever may be troubling you. Know you too can have God's healing power in your life! If He saw fit to heal me He can certainly heal you! All you have to do is ask and believe, and if your faith is wavering ask for the faith to be healed. He will give you that too!
Thursday, July 20, 2017
Where is the Love
This has been on my heart for several days now and I think it is amazing how God will keep bringing what He wants you to hear and share to the forefront of your mind. Either with a song or a conversation or even the verse of the day. Youversion's verse today it 1 Corinthians 13:1 " Though I speak with the tounge of men and of angels, but have not love, I have become sounding brass or a clinging cymbal." Many churches and Christians today leave out the most important part of it all, the love. It was never our job to judge others, so why are we so judgemental? Why do we look down on other people? If we learn just how Jesus did things, we would know that we are acting more like Pharisees than anything. It is our job to shine the light of God on people and love them. Truly love them no matter what. God is the one who convicts people of their sin. God holds everyone accountable to His standards. It is not up to us to hold people accountable to our standards. We love and in so doing it shines God's light on everyone. In that light, darkness cannot hide. It is the light that changes people. When we try to do it ourselves, we only turn people away from the light. So next time we want to think or say something about somebody or to somebody let's ask ourselves, "Where is the love?" If it is not there we are the ones who need to make a change!
Sunday, June 4, 2017
Little things
I know God worked a huge miracle in me when he healed me of my genetic disorder, but do you know He cares about the little things too? For some people those "little" things are huge! I know before God healed me, he sustained me. He gave my family the strength they needed to get through every obstical. It's those little things every day that add up. We may need a little extra energy to get through the day because we didn't sleep much the night before. We may have a cut on our hand that needs to heal quickly so we can wash the dishes. Maybe you don't have enough money to put gas in your car and you need that gas to last a day linger than it normally would. God cares, no matter how small or large you problem may be! He will help you! All you have to do is ask! We often try to come up with a natural explination for the supernatural. But God is still the same God He was in the bible. Even then people tried to explain away the mighty and seemingly small things He did. But if you have faith, true faith, He will meet you where your needs are in a supernatural way. When people try to explain it away, just smile and know in your heart they tried to explain Jesus away and still do. Our faith allows God to work which in turn strengthens our faith! Wow! That's pretty awesome!
Friday, June 2, 2017
Busy Times
Friday, May 12, 2017
Just Amazed
I am so proud of my oldest son, Noah. He is about to graduate from LA Tech as a Biomedical engineering! But that's not all, he will be going to get his doctorate while getting paid to go to school. God just amazes me how He works through things! My illness and the way it was neurological propelled him into the position he is in right now. He eventually wants to have his own research lab and find a much less invasive way to diagnose autonomic and neurological disorders and gastroparesis. I believe with all my heart and soul that God is going to use my children in a mighty way! I have always been so proud of my sweet Noah, even though he hasn't always realized it. He is very hard on himself. He tends to push himself to expectations that no one could possibly meet and often exceeds them. But when he doesn't he is so hard on himself. I think by now he knows how much he is loved and adored. He can see that in his baby girl. I just hope he realizes how many people feel the same! I feel so honored to be his mom and have played a part in making him who he is. I know God made him fully who he is but I thank God for letting me be his mommy! My little man is all grown up!
Friday, April 21, 2017
What starving looks like.
I get it, really I do, when people say, "you don't look like your starving to me." You see, that's the cruelest joke of all. I know you've all seen the images of the starving kids in Africa with their bellies distended. Starvation goes so much deeper than being tiny. I was tiny for a while. But your body goes into a mode where your metabolism halts, and it holds on to everything down to the smallest lifesaver. It continues to cannibalize your bones and muscles and turns them into fuel and fat. That is why starvation diets never really work. Well, in my case, being on complete IV nutrition after years of starvation and dehydration was a recipie for extreme weight gain. The doctors didn't care about my weight because they were focused on my blood work and if I had extra weight on me it would be beneficial in the event that the TPN shut down my liver which it was prone to do. So your body processes all the fats and sugars pumped directly into your heart differently. My body already held on to everything but this was much more. So I got larger than my top pregnancy weight and I didn't even get to enjoy what was making me fat. I spent a good 6 months after my healing simply regaining energy to do simple things. Though I have lost 35 pounds I have a long way to go. I tell you all of this to say, don't judge someone by the way they may look. Medication and illness can do strange things to the body.
Wednesday, April 19, 2017
"Be strong, and of good courage"
In Deuteromony 31 Moses passes the torch to Joshua. I love the words God has for him and I feel they are for us today as well. "Then Moses called Joshua and said to him in the sight of all Isreal, 'Be strong and of good courage, for you must go with this people to the land which the Lord has sworn to their fathers to give them, and you shall cause them to inherit it.'" But I really love what he says after that in verse 8. "And the Lord, He is the one who goes before you. He will be with you, He will not leave you nor forsake you, do not fear nor be dismayed." As I embark on my ministry and begin to share what God has done for me with the world, these words are such a great encouragement. Knowing that not only does God go before me, but He will also give me the words to speak to change lives much like He changed my life. Pray for me as I go on this journey that I will always look to the Lord for the words to speak that I may never cause anyone any harm or to stumble in any way.
Sunday, April 16, 2017
Father Forgive Them
Jesus must have been so hurt and angry at the people who delivered Him to the cross, the ones who beat Him, the ones who put that crown upon His head, the ones who nailed Him to the cross, the ones who looked on with delight in their eyes. All the while, claiming that it was in God's name. But His response was so beautiful. He looked down at them in the midst of His agony and said, "Father forgive them, for they know not what they do." Everything Jesus did was for us, and if we can really grasp that, then we understand the true meaning of forgiveness. We can take a cue from Jesus when we are wronged or mistreated or falsely accused. God says anger is okay. The Bible speaks often of God's anger. Psalms tells us to be angry but do not sin. Yet if we can say of those who have hurt us so deeply, Father forgive them, for they know not what they do; then we truly understand what it is to be forgiven. We get why Jesus came to this earth lived and died. We understand that His death was not the end, but the beginning of everything! On this Easter be thankful for what God has done for each and every one of us! Remember that we have been forgiven of the unforgivable, that God's anger is always more righteous than anything we have to be angry about. God's grace is more than we could ever deserve. We need to give grace to those who have hurt us. It is human nature to want to take vengeance. The Bible says, "Vengeance is Mine, says the Lord." And there are times when we want God to take His vengeance. But if we can look to the cross and instead say, "Father forgive them, for they know not what they do." Then we can truly know God's peace. We are forgiven. We are given the means to come into God's presence. That is true freedom. That is true Love! That is the fullness and meaning of true Joy! That is true peace! Take it, it is freely given. God paid a great price for us! Happy Resurrection Day!
Friday, April 14, 2017
Good Friday
That is a strange name for the day we remember the death and burial of Jesus. But it was both a great and terrible day. One we should all live in awe and respect of. Yes, Jesus went through the most horrific thing we could imagine. Not only a painful, long, and agonizing death, but also always having God right there with Him only to have God turn away at the moment Jesus took on all of our sin and pain that we would ever commit. But that is exactly why it is great. He chose to come to earth, knowing full well what He would suffer. He did it all for us! That is how much we are loved! So as you go through this day, try not to keep that on your mind. Know what John 3:16 really means, "For God so loved the world that He sent His only begotten Son, that whoever believes in Him should not perish but have eternal life." If you have ever been involved in church you probably know that verse. But did you realize those were the words of Jesus himself? Have a wonderful but reminiscent Good Friday everyone!
Thursday, April 13, 2017
Getting back on track
I don't always write in here because sometimes I feel like I have nothing important to say. But I suppose my posts don't always have to be profound because truly my own words are never profound. Only the words God gives me ever really mean anything. When I was sick, I neglected basically everything. I was stuck in survival mode. I didn't really live. When my daughter was born we prayed that she would be so full of life that she just couldn't bottle it up and that describes her to a T. Before I got sick we lived full lives. Sure we had problems, but we really lived. There were still many times we were stuck in survival mode. Either because of financial issues, or some other crisis but it was never as bad as when I was sick. The thing is, when the big things in life are neglected, the little things are as well. I thank God I have such an amazing husband who made sure to make us all smile and laugh and cherish each other even when life was at its worst. When we moved back here, he built me a beautiful master bedroom. Our sanctuary. Your bedroom should be your sanctuary, but more often than not it becomes a catch all. Ours did and the nicest room in our meager home became a heap of a mess. After I got better, I was still so very weak. I continued to neglect things like our room. I am so happy to say now that I am finally getting my energy back and my zeal for life that even though it has taken a while and alot of work, I am finally getting my sanctuary back! I feel like I am finally getting my life back and I have so much time to make up for. We cannot change mistakes we have made in the past, only try to do better each and every day! I hope you too will live your life to the fullest. Not worrying about what you could have done differently, but what you can do to thrive today. Celebrate life, every moment, because every moment is a Gift from God!