The journey through white walls and butterfly needles

the journey i have been on finding out about my EDS (Elhers Danlos Syndrome) and how to live. this is a story of frustration, hope, insecurity, faith and love.

In January 2010 I noticed the strange but concerning symptoms of sickness. At first it was just shortness of breath after going down the hall and the major fatigue that couldn’t be explained. I walked slower than anyone in the school. My pediatrician ran hundreds of blood tests, specimen samples, and CAT scan/MRIs to try to figure out what was wrong. My doctor couldn’t find anything that would explain all the things going on with my body so she sent me to about 15 different specialists to go through more testing.

Over time my symptoms increased rapidly, my doctors didn’t know what was wrong with me or how to help me. Each doctor I went to told me the same things over and over “you are in a medical black hole. We don’t know what to do for you or how to help. Just try to live as normal as you possibly can and keep a good attitude, and maybe someday we will know what’s wrong with you.”

About a year went by with many misdiagnoses and countless tests. I had to miss so much school between the fighting Pain And monthly sometimes bi- monthly doctor’s visits, that it’s a miracle I passed junior year of high school with an A/ B average.

While I was going through all the testing and feelings of uncertainty and sometimes even fear, my closest friends were always there for me. Bonnie was always there to encourage and help me understand things my doctors said, she prays for me every day and reminds me over and over again how valuable I am to God. I was never without support, encouragement, prayer, or love the whole time. Even now they are still always there for me. Sarah would hug me as tight as she could and make me cry when I had been repressing the tears of frustration and fear. My Bible study friends were always finding new ways to make me laugh and learn to be okay with my walker.

One time we were down at the light rail ministering to people and my friend Nathan took my walker when I was sitting ran around the depot like an old man talking like Galum from “the Lord of the Rings.” Another time at church my associate pastor came up behind me and started tipping me backwards begging me to go to Taco Bell with all the other “young people” (mostly the college age kids that was the youth group before we all got too old for being called “youth”. I'm the baby so everyone else is almost done with collage or is done)

In the second semester of my sophomore year, I pushed myself to go to school and stay up doing all my homework. I wouldn't let my body know what it was like to rest; when spring break came and my body wasn't constantly going, my body was so overworked and exhausted I could not lift my own head. My mom had to feed me and put a cup to my mouth to drink; for Two weeks it was like this.

I thought that if I didn't push as hard as I could I would miss too much school and flunk. It was then that I began to realize if I am going to live I must give up all control over my body, my education, and even little things like whether or not I'm able to shower or do my makeup. I had to give it all into God’s hands or I would kill myself from lack of rest.

After a long time my migraine specialist suggested that I might have Elhers Danlos

Syndrome. Her best friend has it and she really felt that I had it. We made an appointment with a genetic specialist and went through the testing for it. The results came out positive, I have Elhers Danlose Syndrome Type 3 on a very severe scale.

Elhers Danlose Syndrome (EDS) is a genetic connective tissue disorder that causes excruciating pain all over your body, your joints dislocate all the time, you have a muscle tone loss and you are extremely hyperflexible.

There are many types of EDS. Some only make you hyperflexible, others mostly are vascular heart problems that can be fatal, some are hypermobility, hyperlastisity, and joint dislocations with excruciating pain everywhere you have connective tissue. Like most disorders the syndrome severity depends on the person and all cases are individualized to the patient. Some may never know they have EDS, and others depend on walkers and wheelchairs to get them around, some are benign and others malignant. Everything depends on the genes you got from your parents.

Some people will look at me and see this 18-year-old girl only able to take a few steps on my own and have pity for it. The people who knew me as the happy healthy active normal kid want nothing more than for me to just be healed as if it was the flu or a cold. Yes, it is very hard sometimes being the only person my age that I know in a wheelchair and on a walker but I would rather sit down the rest of my life and depend on God for my every move then be healthy and rely on myself.

God has used my health to grow and teach me more things than I can count. He has taken me from very little faith and trust in him to complete total reliance on him. He has broken me of bad habits and taught me ways to handle stress and pain in a healthy way. God has made me so rich in his I would never go back to the life I used to have. Is it not through suffering and pain that you grow closer to God? You cannot depend on him if you have no need for it.

I know without a shadow of a doubt that if I had not gotten sick I would be a very shallow bitter person with a plastic smile. I knew how to lie, pretend and cheat my way through life; honesty and integrity had no meaning to me. The first thing about me to change when I became a true Christian is God took my lying, manipulative, stubborn heart and transformed me into an honest woman who depends on him to eat, to get out of bed, to walk, some days to smile and talk. That to me is the greatest gift I can ever receive.

Through this trial in my life I'm able to minister to other people who see me and ask why I don't ditch God, or how could he let me go through something like this when I had my whole life ahead of me. I can look them in the eyes and honestly tell them that he let me go through this to teach me. He said he would never leave me or forsake me. This promise he has been faithful to keep even in the littlest things, but he never promised me he wouldn't let bad things happen. He loves me enough to die for me, but he doesn't love me enough to leave me in the dark. He promised me he would make good out of all my troubles and this he has kept. There is no promise God does not keep and there is nothing he can't do.