I will praise Him in the hallway.

Loeys-Dietz Syndrome is a connective tissue disorder that creates joint instability and involves Bicuspid Aortic Valve Disorders and aneurysms... my exact heart condition. This is the syndrome I am being tested for. It's very similar to what I am currently diagnosed with, EDS, except EDS doesn't involve my heart condition. People with Loeys-Dietz Syndrome (LDS) often have aneurysms that dissect or rupture at smaller sizes than those with other connective tissue disorders.

When the doctors told me this could be a possibility instead of EDS, I didn't quite understand what it could mean. Mostly because the doctor wouldn't answer my questions. I am the type of person who wants to know the answers to every possible circumstance that could take place. Doctors don't like to think that way. So every time I asked my cardiologist, "What if...?" he would reply with, "Let's just wait and see what you have." So this left me with nothing except that I must wait.

Yesterday the cardiologist called. He called to chat about my test results, but mom finally got some answers to my "what if" questions. The biggest one being: what if this genetic test for LDS is positive? If the test comes back negative, we are right back where we were. If it comes back positive, the cardiologist said that his recommendation would be open heart surgery and that he will be referring us to a surgeon. Big, big, big news.

I've waited my entire life to be this close to open heart surgery. I've prepared. I've read. I've talked to others who have been through the surgery. I've talked to doctors, specialists, surgeons. My case has even been taken before the surgery review board and been turned down. I've prayed and prayed for answers. Maybe they are finally here.

I've said some prayers and shed some tears since the cardiologist called yesterday. I've even laughed a little because I prayed for something different and well, this is definitely different. So for now, what else can I do but pray and wait? The problem is I'm not quite sure what to pray for. I'm not quite sure what to tell others to pray for.

I don't want people to pray for the test to be negative. Because I don't want to be stuck back where I was. I don't know that I want people to pray the test is positive either because frankly, open heart surgery is number one on my list of fears. So I guess what I want prayer for is that God will provide us with the best option for me and my health right now. I want prayer for peace, understanding, and courage. Regardless of the outcome of this test, it's a scary thing. I want prayer that we get the results back quickly so the waiting isn't so long and I can make the other decisions that will fit around whether or not we are pursuing surgery. Things like school and whether or not I will be going back in a few weeks.

I just want answers. Because waiting is the hardest part. Waiting and wondering what will happen. But I'll wait as long as I need to because God is good and He has a plan. I am hoping that this is the plan finally unfolding. So here I stand, hands lifted in prayer and praise for the God who has never failed me and never will. And until he opens the next door, I will praise Him in the hallway.

All I want for Christmas is...the flu?

What did you get for Christmas? This year, Santa decided to bring me the flu. Now this would be terrible enough for any normal person, but with all my medical conditions, I felt like I might as well have been dying. Luckily, I have the world's best nurse - my mom.

This is day number 8 in bed, but now I am feeling SO much better. That's a big step up from crying hysterically from pain and nausea or almost punching a nurse in the ER for giving me a shot and strep test... Not my finest moments. But sometimes we have to experience those not so great moments to appreciate the okay ones.

I'm not sure why exactly I got so sick. I'd like to think God was protecting me from something or perhaps there is a lesson to be learned in all of this. Lately after bouncing from doctors to doctor, dealing with the daily struggles of life, and learning to walk through the trials of my medical problems, I got a little down. I got sad. I got a little angry. You know those people who had one bad thing happen to them and then after that they are changed, asking God how He could allow that to happen, and refusing to have the same happiness  they experienced before? That's the person I don't want to be. That's the person I refuse to let lead my life, control my happiness, or direct my future. I know with God that I am far too good for that.

But sometimes I still get a little downtrodden dealing with this life, but I mean... who doesn't? Life is tough. So maybe this was God's way of showing me how good I really have it. When I start to feel sad, I always remind myself of just how much worse things could be. I have it made compared to how so many people live, especially in my health.

A few days ago towards the middle and worst part of this sickness, I crawled out of bed to go to the bathroom. I couldn't even stand up straight from the aches and pains my body was experiencing, it hurt to breathe, and I felt like death. I looked in the mirror at my frail and humped over body and began to cry. But in that moment of questions how I could feel so terribly, so sick, and so sad, I have never been more thankful for my broken body, my defective heart, and my aching joints. Through my tears, I prayed thanking God for the health I do have, that I don't have to experience pain to this severity every day, and then asked for His continued healing.

Thank God everyday for your health. Thank Him that you can see, talk, hear, walk, move, sing, dance, and praise His name. You never know when you may lose the ability to do any one of those things. I don't think we appreciate these simple tasks enough. Having this sickness and being bedridden for just eight days has made me think about it all. What about those who are secluded to a bed for their entire lives, those who use a wheel chair as their legs, or those who use a cane or stick as their eyes? I am truly blessed.

This Christmas all I wanted was to feel better, but in feeling so sick I was reminded of what Christmas is about. Christmas isn't the new clothes, shoes, or Kitchen Aid that I received. (Although I am VERY excited to bake once I am well!) Christmas is so much more. This Christmas was my friends and family's prayers for my health. It was my sister fixing my hair so we could take Christmas pictures because I didn't have the strength to. It was my family Christmas Eve dinner where I had solid food for the first time in days. It was the funny pictures we took around the tree. It was the long distance phone call with my someone special. It was the pallet my sister made me to lay on so that I could be with my family to open presents. It was my mom laying in bed with me talking to me until 4 AM because I couldn't sleep alone. It was my Grandad's smile, my Dad's hug, my brother-in-law's jokes, my baby cousin's laugh. It was family. It was memories. It was thankfulness for my many blessings.

What blessings did you get for Christmas this year?

Increasing faith.

What a week this has been! I planned on updating everyone as soon as I returned from Cleveland, but after coming down with the flu (more on that later) I have been bedridden for the last week. I've only ventured out twice and both times I immediately regretted leaving my bed. Wanting to share updates, ideas, and prayer requests with you all, here I sit in bed typing away and finally sharing the turn of events from the last seven days. Here goes.

On day two of Cleveland, I had an MRI, saw the Neurologist, and had some blood work done. I was unable to pick up the heart monitor because they were out of stock. But I guess since Cleveland Clinic is number one in the nation for their heart institute, they get a lot of defective heart customers who need the monitors. One will be mailed to me soon so that we can begin monitoring my heart and hopefully catch some excitement for  the doctors to see.

The MRI went as well as one could go. I was privileged to wear a lovely Cleveland Clinic hospital gown and pants that were both about five sizes too large. I looked lovely. When it was time to put the IV in, the nurses tried to make my mom stand back behind a curtain. I guess when the IV came out so did my inner five year old because I quickly called for mom and the nurses let her come stand by me and hold my hand. I made it through the two hour MRI very well and I even fell asleep at the end. I was very thankful and relieved to be done and finally get the IV taken out of my arm.

As soon as the MRI was finished we rushed to another floor in another building to see the Neurologist. He was a very nice man who had the BEST accent since he was from South Africa. I could understand most of what he said, but he did have to repeat himself a few times. I'm not sure if this was because I couldn't understand what he said or because I was just listening to his accent instead of what he was saying. The Neurologists performed a few simple tests like having me walk different ways, balance, and do some hand eye coordination tasks. Apparently from that I seem to be pretty normal, but based on my symptoms the doctor wants to perform a few more tests that have been scheduled for early March. We are praying for a cancellation so that we can get them done sooner. What impressed me most about this visit is that the doctor was only seeing me as a favor to the Cardiologist and that we were actually in his office on his lunch break. I felt pretty special to be fit in like that, but a little bad that maybe the doctor didn't eat lunch that day.

Five tubes of blood were taken to be sent off to a few different labs for genetic testing as well as some tests from the Neurologist and Cardiologist. So far the blood work is all normal, but we are still waiting on the results from the genetic testing. The MRI showed my aneurysm is steady and is right around the same 4.2 centimeters. The MRA showed no concerns or issues that the geneticist was looking for.

So same old tests, new doctors, and new results. God answers prayers.

Into His hands and into my heart.

Sometimes the pains are tolerable. Sometimes the pains are excruciating. Sometimes the pains happen in strange ways and you just have to laugh a little through it.This morning I woke up stiff, as I usually do. I decided to try to move around to make my body feel a little better. When I stretched out my arms, I felt something strange in my chest and felt immediate pain. I quickly realized that I had overstretched or pulled a muscle. I have barely been able to move without pain since. Ah, pain from stretching? A day in the life.

The hospital visit today went well. Everything went by quickly and I wasn't left in a waiting room for more than five minutes. My cardiologist laughed a lot; he thought he was funny. I didn't tell him this...but he isn't. He may not be funny, but he was extremely helpful. He got an additional appointment scheduled for us tomorrow with a pediatric neurologist. Usually it takes months to get into specialists. I got in to see two different ones immediately. A God thing, most definitely. 

From a cardiologist's standpoint, my heart looks "good". The aneurysm hasn't grown and my valve is working  as well as it can. This doctor felt so confident in how my heart looks that he has said he only needs to see me once a year instead of biannually. He also said I can discontinue use of one of my heart medications. So I think this is good news. As good of news as I can get for no change and looking "good". 

The geneticist was great. She was thorough, nice, and listened to me. By looking at my history, records, and just my body she wasn't convinced I have EDS. So she wants to continue testing to rule out any other possibilities. I definitely have a connective tissue disorder though as we already knew. She also recommends I begin going to a pain management clinic and continue with physical therapy. The testing the geneticist is doing will come through blood work and an MRA. (Similar to an MRI.) The doctor said since I was already having an MRI tomorrow she would call and see if there was any way they could do the MRA at the same time. She told us it was very doubtful that they could do that, but she would try. Not ten minutes after we left her office, she called us sounding very surprised and told us they could do both scans! I wasn't nearly as surprised though... God once again? I think so. 

Tomorrow I will have an MRI/MRA, meet with a neurologist, get some blood work, and pick up a heart monitor that I will wear for a month to try to capture some recordings of my "episodes." Episodes being my chest pain, palpitations, and coughing fits. Hopefully it can get the recordings it needs to help the doctors better understand my issues.

So far, I definitely feel like this visit is a good one. New information to take in, new treatments that should help with my symptoms, and doctors who seem concerned about me as a whole person, not just their area of my body. I am very thankful when I find a doctor who genuinely cares. After my tests and appointment tomorrow, hopefully we will be heading home. But who knows, God may have more appointments in mind. 

But for now, I am relaxing in the hotel room with my mother, who spent her birthday today at the hospital with me. I am one blessed girl to have parents who provide for me, a family that loves and supports me, doctors who listen and want to help, and a God who never ceases to amaze me. 

When I become scared, worried, or ask what if, I remind myself that this is all out of my hands and into God's. While I am sitting and wondering, He already knows. While I ask myself what if and why, He says, "I will show you when the time is right." While I am scared, He lets me feel his amazing peace. So God, I give this is all to you. Because you have a plan. Because you hold my heart. Because you know what the future holds. Because you have the answers. Because you made me. Because you love me. Because you promised this is all for something. 

I will try not to worry. 

I will have faith in You always.

I will pray to feel your sweet peace and amazing presence. 

Cleveland Clinic... here I come.

My prayer warrior friends sure do work fast... Because today God showed His glory and prayers were answered. 

The original plan for this Cleveland trip was for me to have a consultation with the cardiologist at 2pm on Tuesday. That's all. But mom thought since we are coming all that way that she should at least try to schedule some tests and meet with some of the many specialists I so desperately need to see. So for the last couple of weeks she has been calling and emailing trying to get in touch with someone who would help her. All the letters, calls, and messages went unanswered. Today she tried one last time.

I was taking my turn at driving on our eight hour trip so mom began making phone calls. She called the office of the cardiologist I am seeing on Tuesday and began talking to a lady who works in the office. The woman listened to mom's requests and then placed her on hold. After a few minutes, the cardiologist himself picked up the phone! Again mom explained the situation and asked what he could do. He listened patiently and talked to mom for a good twenty minutes telling her that he could try, but could not guarantee anything.

Within two hours, mom's cell phone rang three more times confirming three different tests and an additional appointment with the genetics group at the clinic. WOW. That's all I could think or say. God and this cardiologist were working fast and working together. I believe it was "a God thing" as I often say when God shows Himself. Or one of my "Wow God moments". Whatever you want to call it, I firmly believe God's hand was in it, along with a lot of prayer. 

So if nothing else "good" happens, I will try to be satisfied because God has already answered my prayer. I asked for something different and for a doctor who would take the time to listen, care, and help. He gave me just that. 

Please continue to pray for me as I will have three tests and two consultations tomorrow and Wednesday. Tomorrow will entail the usual tests: an EKG (to test my heart's electrical activity) and an echocardiogram (Like an ultrasound of the heart which will show the blood flow, regurgitation, leakage, and provide a rough measurement of my aneurysm). I then will meet with the cardiologist to talk about my symptoms, pains, measurements, and my options for the next step in my cardiac care. After that I will meet with the genetics group to discuss my connective tissue disorder, EDS. We will discuss all of my many aches and pains and try to piece together the medical mystery of my body. Hopefully we can discuss my current treatment and future plans for pain management.

On Wednesday, I will have an MRI. This will give a more accurate measurement of my aneurysm. When it comes to medical testing, I can handle almost anything, but I particularly despise to tests: the strep test, and the MRI. I know, a strep test? Yes, I am a baby. An MRI doesn't sound so bad, but for whatever reason I always end up sick, almost passing out, and crying. 

In case you don't know what an MRI is... For a cardiac MRI, they begin by inserting an IV, but not just a normal one, one that contains a large plastic straw that stays inside your arm the entire duration of the test (which is about 1 1/2-2 hours). This usually brings on nausea, so the nurses lay me down on a hospital bed, prop up my feet, and bring me apple juice. Between this, the pain in my arm from the IV, and the thought of silly I must look, I usually end up crying. 

After I am calm, the nurses take me into the MRI room. I lay down on the not so comfy table and they begin strapping me in, placing things on top of me, and moving around very quickly. I usually end up with my arms strapped to my sides, a large and heavy spongy looking board laying on my chest, something around my head, a pillow under my knees, and sometimes if you are lucky headphones and video goggles so you can watch a movie or listen to music. (That part IS pretty cool.) Then they slowly move me into the ridiculously small tube and leave the room. 

And so I lay there unable to move more than just raising my hand to feel the tube six inches from my face.. sometimes panic sets in and I begin to feel claustrophobic (something that never happened to me until I started having to do MRIs). This is when I silently begin crying once again and start praying to myself. I know that is the only reason I don't call the nurse to come remove me from the tube. Once I calm down, I try to relax and enjoy my movie or music and focus on the instructions of when to breathe and when to 'hold it for as long as I can.' 

After my MRI on Wednesday, we are done. Unless the doctors surprise us with more tests or God surprises us with big news. After two days of the hospital, I will be very happy to return to my state, my town, my home, my bed, my friends, my family, and my kitty.

I will keep everyone updated on the events that occur over the next few days. Don't be alarmed - this is all routine. But please do think of me and lift my mom and I up in prayer, particularly on Wednesday at 10:30 when I will begin prepping for the MRI. 

I cannot tell you how grateful I am for your thoughts and prayers for my health, my safety, my emotions, and my family. I am so thankful for each and every kind word, thought, prayer, hand squeeze, (gentle) pat on the back, and hug. I love you all and I thank you from the bottom of my heart.

I just want something different.

I'm ready for a change. I'm ready to hear something different. I'm ready for a doctor who will listen, who wants to help, really help.

Every time I go to an appointment I hear the same things...

Your heart looks great!
Maybe you just need to exercise more; that's why you're short of breath.
I don't know why you're in pain, because everything looks fine.
You don't really want surgery.
sfsahfhasfuihilsuhfuhushfukywuhfihslf - doctor words they only say to sound intelligent-

I am not okay. I am not fine. I am in pain. I hurt. I am ready to feel better. I am ready to be healed. Whatever that means. Whether it is a new medicine, treatment, pain management, a change in measurements,  surgery, or just someone who actually listens to me and cares. I just don't want to travel seven hours to a top ranked hospital to hear the same old stuff.

People always pray for me when I make these trips to the doctor, which I greatly appreciate, but I think maybe I should be more specific with how I want people to pray. Every six months when I report back to my friends and family that I do not yet need surgery and that my aneurysm is about the same size, they all say...

Praise the Lord!
So thankful you got good news!
Whew, no surgery!
That's awesome!
Glad you got a good report!

I love all of these people dearly, but after years of hearing this same thing from the doctors, it gets old. Nobody else seems to understand my frustration of staying in the same place, living my life six months at a time, and never really getting any answers. Maybe this is a test of patience for me. Maybe God isn't quite ready to bring my physical healing until I have learned my lessons, grown more as a person, and gained a better understanding of His will. But whatever is going on, I am tired.

So tomorrow as I head to Cleveland, I pray for peace of mind. I pray for a humble heart. I pray for answers. I pray for something different. I pray for His will. I pray for guidance. I pray for safety. I pray for emotional security. I pray for healing. His healing. Whatever it is. However He wants to bring it. I know He will - in His time. So for now I will wait, I will hope, and I will pray.

For those of you who want to pray for me in this journey, please do. But please don't pray for God to hold off my surgery. Don't pray for my aneurysm not to grow. Pray for God to move. Pray for His will to be done. Pray for His healing to begin. Pray for answers. Pray for change. Pray for me to have peace, acceptance, and happiness in whatever news I receive. Pray. Pray. Pray. 

Jesus, bring the rain.

Often times when people find out about all of my various medical conditions they say to me:
"I just don't know how you are so happy with all that you have to deal with."
"You're just so optimistic."
"I don't think I would handle this as well as you do."

Usually I respond with thank you or just smile, but inside other thoughts run through my mind. What choice do I have? Why would I just sit and feel sorry for myself all of the time? I've got too many dreams to fulfill to just lay around and cry. God has a plan. This will bring Him glory. Somehow, someway. This is part of a divine plan. This is not for nothing. 

But despite knowing all of those things, sometimes I don't always handle it like people think I do. Sometimes I cry. Sometimes I break down on my boyfriend when he tells me he is sorry that I hurt, or with my girls at Bible study when I share my struggles, or even on my preacher when I am asking for prayer for my next appointment. Sometimes I'm not so graceful about it. Sometimes I can't handle it. Sometimes I just need a hand to hold, a shoulder to cry on, a big hug, or somebody just to listen. Thankfully I have many angels in my life, watching out for me, asking if I am okay, helping me with things they know I can't do on my own, and praying for me. Thank you to my many angels.

Of course the best shoulder to cry on, hand to hold, or someone to dry my tears is my Heavenly Father. Because even though this life and these problems seem like a torrential down pouring of pain, He still sees the good in it. Because when I cry out to Him again and again, He dries my tears and reminds me that He has a plan. He lets me know that He has blessed me with this life, with this story, with these problems, and these pains because it will bring Him glory. Somehow, someway, someday. He shows me that this is NOT for nothing. He is definitely up to something bigger than I could ever imagine. That is what keeps me going. That is why I get out of bed every morning. It's why I smile through my many tears. It's why I so freely share my story with everyone. It's why I can make jokes about my conditions. It's why I am me... It's part of me. It  is me.

So however God decides to show His glory, I am happy to be a part of it. Sometimes that is my prayer to Him: "God, show me your glory today." Sometimes I pray for His plan to be revealed, for others to be helped through my conditions, or just to know what He is up to. But whatever it is, I will walk through this storm with Him holding my hand because I KNOW the blue skies and rainbows are ahead. I know that storms never last forever and that sunshine always follows. And ultimately I know that after this painful life, glory, peace, and happiness await me in Heaven.

My very good friend and fellow 'EDSer' said... "I guess it just means more to Him if we have to dislocate our shoulders to raise our hands to Him, or pop out our jaws to sing to Him, and the 'Sacrifice of praise' takes on a whole new meaning."

That it does. So whatever it takes... I will praise my Lord.

I will open my mouth with coughs and a weak voice to sing His praises.
I will raise my hyper-extended arms to give Him glory.
I will sit in church barely able to hold myself up to be edified by my church family. 
I will walk on my ever twisting ankles wherever He leads me. 
I will close my tear filled eyes to petition Him in prayer.
I will keep my wandering mind focused on the blessings He provides.
I will remind my defective, enlarged, and fearful heart that it belongs to Him.
I will tell my painful, yet wonderful story again and again to bring encouragement to others.
I will stand up for God - always - even though I get dizzy.
I will remind myself every single day that this is His story, for His glory, not for mine.

Bring me joy, bring me peace

Bring the chance to be free

Bring me anything that brings You glory

And I know there'll be days

When this life brings me pain

But if that's what it takes to praise You

Jesus, bring the rain

Fearfully and Wonderfully Made

"I will praise you, for I am fearfully and wonderfully made..."

                                                                                -Psalm 139:14

Sometimes I don't feel fearfully and wonderfully made. When I wake up in the mornings and painfully roll out of bed, I don't feel wonderful. When I have to stop walking because my heart is pounding, I don't feel amazing. When I trip and fall because my ankle gave out, I don't feel great. When I cry out in pain again and again, I certainly don't feel like a carefully crafted piece of art handmade by God. 

But I am. 

Often times when these things happen or I have to explain why I can't go on the roller coaster or bumper cars, play tag, do a kart wheel, go bowling, go skydiving or bungee jumping, or even just sprint, I answer simply with "God made me special". I say it jokingly. I say it as a way to not explain my every ache or pain. I say that when I trip and everybody turns and looks. I say that when I am trying to tell people what is wrong with me and get nothing but a blank stare. God made me special. Even though I say it jokingly or sometimes to get people to stop asking questions, it is definitely true. But sometimes I have trouble remembering that. It's hard to feel special when you hurt so badly. 

But no matter what I feel, God still made me... and God doesn't make junk. God makes special treasures. God places his hand upon each person, He creates them with special characteristics unique to them, and He crafts them for specific goals and a specific purpose. I'm just still trying to find mine. But while I am searching I can always take comfort in Jeremiah 29:11 "For I know the thoughts that I think towards you, says the Lord, thoughts of peace and not evil, to give you a future and a hope." God has a plan. I pray it's big. I pray it's wonderful. I pray it is life changing. I pray it makes the pain worth it. 

God's word tells me that I am made in His image. Really? I have always been taught that, always said it, always believed it, and never really thought about it. It's hard to imagine being anything like a supernatural being that is beyond perfect. It's hard to feel like God when I feel so broken. But somehow I am like my Lord. I have some traits like my heavenly father and he thinks I am beautiful. When I get to Heaven, I can't wait to run and hug God and talk with Him and compare what things I have that are like His image. I can't wait for Him to tell me how he made me, how he decided what traits to give me, and why He decided to make me "special". I especially can't wait to see the hyper extended elbows of Jesus. 

...Because Jesus must have EDS too.