My story is being written by God

Why oh why have I started a blog? Maybe to share my struggles, mostly my medical problems. Maybe because other people can learn a thing or two from me. Maybe because I like talking and writing. Maybe because I hear writing is therapeutic, but my hand cramps up too much to actually keep a journal. Maybe because I need to share my story far more than anyone needs to read it. I need to get this out. I need to talk without anyone interrupting. I need to know that even if nobody ever reads this, it's there. I need to know that someday I can look back on all of this. Someday when there is a cure and all is right in my world, I can look back and feel good about how far I have come. Someday...

So what is my story? My name is Stacie Elaine Lawrence. I have been trying to find my place in this world for almost 19 years now. I have a wonderful family, amazing friends, an incredible church family, and an unfailing and unconditionally loving God. I am a student at Eastern Kentucky University and majoring in Public Relations and Spanish. When I grow up, I want to be a translator at a hospital and help people the way I have been helped by so many others. I have been helped so much because I have multiple medical conditions that might take awhile to name.

When I was a toddler, my pediatrician heard a heart murmur. Off to a cardiologist I went where I was diagnosed with a bicuspid aortic valve. In non-medical terms, the normal heart valve has three cusps or flaps, but my aortic valve only has two. This can cause some leakage and regurgitation, but I was told I would not need any type of surgery until my thirties or forties. So no big deal, I just had to be seen by my cardiologist once a year. All was fine until the summer after sixth grade. At my annual visit, the doctor discovered an aneurysm in my test report. I had an aneurysm on my ascending aorta. Again in non-medical terms, the main artery of my heart was enlarged to almost twice the size of what it should be. "It's not a big deal", the doctor assured us. "We will just put you on some medication and keep an eye on it. You don't have any restrictions. Live life normally." So I lived normally (or as normally as normal is for me) for the next year.

At my 2008 appointment, we got some earth shattering news: the aneurysm had grown and surgery was imminent. My parents thoughtfully and prayerfully considered what the doctors said, but ended up deciding to get a second opinion, and a third, and a fourth... That summer I visited four different hospitals in three different states. All the rest advised us to wait on surgery - it wasn't as life threatening as we were told and I could continue on in "normal" living with few restrictions. We decided on a hospital and biannual visits and I continue to be seen there today. I have been through many ups and downs with my aneurysm steadily growing. Each visit I am told that it isn't big enough for surgery so I must sit on my hands and wait for another six months. So basically, I have a ticking time bomb in my chest. Scary, huh?

On top of all of this, I have always had numerous other problems, stomach issues, nausea, constant sicknesses and infections, joint and muscle pain, extreme fatigue, shortness of breath, palpitations, chest pain, and pretty much anything else you can think of. So doctor after doctor tried to piece my medical puzzle together. After years of searching, we finally found an answer: Ehlers-Danlos Syndrome, or EDS for short. What is EDS? Basically it means all the collagen in my body is defective. My skin is lose, my joints are weak,  I have little muscle and ligaments, and I am way too flexible. Why does this cause problems? Well, I constantly am in pain, I twist and dislocate all parts of my body, and it can cause more problems later on down the road. With the EDS diagnosis came more medications; sometimes I feel like I could open my own pharmacy. The only upside to this condition are the strange 'party tricks' I can do like making my elbows bend the wrong way, turning my head almost all the way around, and standing on the outside of my feet.

So currently, I have enough medical issues for an entire nursing home and it's all being managed by regular doctor visits, physical therapy, and lots of medication. I am waiting on surgery, waiting for more answers, waiting on new research, waiting to see another doctor, waiting for more test results, waiting for a cure, and waiting for my healing from God. Somehow through all of this, I have been able to keep a pretty positive attitude. Sure I have my bad days where I just need a good cry, but who doesn't have that every once in a while? But for the most part, I am happy. I have joy. My good friend, who also has EDS, said it best with this quote: "The joy of the Lord is my strength. Not just happiness, because I'm not always going to be happy in life. But joy stays with me, no matter what I'm going through."

So no matter what I go through, I will not give up and I will live in peace knowing that I never have to walk through this alone. I have my support group of friends and family, but most importantly I have an amazing God who holds my hand and my future.