A Swan I will be.

Wow, am I thankful to be home! Kentucky has never looked so beautiful, smelled so amazing, and felt so right. I have learned from this trip that I am a Kentucky girl, through and through. More about that later though; I have so many adventures to share.

For now, I want to share the reasons we were there, my health, my "unique" conditions, and finding help for them. We saw five specialists while we were there, had two tests done, and 10 tubes of blood drawn! Since most of you don't know and/or don't care about fancy medical words and names of conditions, I will try to keep this as relate-able and readable as possible.

Our first appointment was on Monday morning with Orthopedics. Orthopedics deals with skeletal, muscular, and joint correction, repair, and stabilization. 

Backstory: Recently, we visited Physiatry  at UK. (Physiatry is basically Orthopedics mixed with Physical Therapy.) The Physiatrist recommended ankle supports, a belt like brace for hip and back  stabilization, continuing to wear my knee brace, and continued physical therapy.

So at the Orthopedist's office, we discussed all my various pains, dislocations, braces, and pain treatment. He fully agreed with the Physiatrist's recommendations. Meaning: we FINALLY found somebody in state who seems to know what they are talking about! At Johns Hopkins, it is rare to find a doctor who doesn't know what a connective tissue disorder is. In Kentucky, it is rare to find one who does know what it is. So it is a relief to know that we have found a good doctor to help manage my pain and stabilization.

So the treatment plan for me is: new ankle supports, (these will be super cute and actually wrap around my entire ankle - woot!) an SI belt, which is the belt/brace for my hips and back, and continuing with my other current treatments. I'm actually happy with this plan. It is something new and hopefully helpful, but not so much information that it is overwhelming.

Our second appointment was to have an echocardiogram (ultrasound of the heart). This examines the blood flow in my heart and also measures my aneurysm to see how it has grown. Since it was my first echocardiogram at Johns Hopkins, they did a full 45 minute test. It went well and we got the results the next day. The aneurysm is still the same at 4.2 centimeters and my valve is still pumping well and only has 'trivial' leakage.

Our third appointment was with a Gastroenterologist. (Stomach doctor.) This was to address all of my stomach issues. (I'll spare you the details.) This doctor was very nice and quite funny. He listened to all of my problems, carefully considered all possibilities and then made some recommendations. He suggested that I have another colonoscopy and endoscopy. What fun! He also recommends that I begin taking a medication to help with my nausea and over all stomach motility. Hopefully this will help to reduce pain, nausea, and all my other stomach related issues!

Our fourth event at the hospital was a Cardiology and Genetics appointment. This is where we got to meet Dr. Hal Dietz, co discoverer of the Loeys-Dietz syndrome, a connective tissue disorder.(You know you have a lot of health issues when you get excited about meeting a 'famous' doctor.) Both Dr. Dietz and the geneticist were very helpful and genuinely seemed like they wanted to help me. We spent 3 hours in the office, not because we had to wait that long, but because we were talking with a doctor for that long.

Through our discussion with the doctor, we learned that previous hospitals did not fully complete the genetic testing. Basically, if the first step comes back with a certain result, they don't continue on. Even though some things could be missed later in the testing, like possibly a diagnosis, they stopped. Johns Hopkins wants to redo the testing, so hopefully they will complete it in it's entirety.

With that news and the fact that I don't exhibit classic symptoms of any connective tissue disorder, I am now a SWAN. (Syndrome without a name) But the doctor assured me that this is not a bad thing. He said it is better to not have a diagnosis than to be misdiagnosed and treated for something I do not have. So a Swan, I will be.

Dr. Dietz wanted to do some neck x-rays just to completely rule out one disorder. Although I impressed the x-ray tech with how 'bendy' I was, they were normal. The doctor says this is a good thing.

Along with these things, the doctors have decided to double my heart medication dosage. They said that taking a higher dosage should not cause any complications and will hopefully keep my aneurysm from growing. In mice with marfans, (a specific connective tissue disorder) the medication even helped shrink the aneurysm and remodel the aorta, making it less defective and prone to aneurysms. I do not have marfans, nor am I a mouse, but I guess there is still a little hope.

Finally, my favorite thing the doctor had to say... I told the doctors that I just want to have surgery so that I can "be fixed". Dr. Dietz looked at me thoughtfully and said, "Don't think of it in a way that you are broken. You are not broken." He explained that even though my genes and DNA ma be different, they still work. Although I may sometimes be labeled defective, I am not broken. I know he meant it in a physical sense, but it made me feel better about every aspect of my life. I imagine this is what God thinks of me too - I am not broken. 

Our final appointment was with an Allergist/Immunologist. She is the wife of the Gastroenterologist that I saw earlier in the week - how cool! We explained to this doctor about my chronic "sinus infections", cough, and other allergy issues that just never seem to go away completely. Each time I get sick, I am diagnosed with a sinus infection, put on an antibiotic, and then never seem to completely get better. It is almost as if with each sickness I have, I lose a little piece of my health that I never fully gain back.

After a long talk with the doctor, she recommended a more regular use of some allergy medications and the continued use of one that I am already taking. She also said that maybe I have never recovered fully from a sinus infection. We already knew that my immune system was pretty much non-existent, but we didn't know just how long I should be taking antibiotics. She said next time I get sick, she recommends a 3 MONTH antibiotic treatment plan. She said this could get everything cleared out and functioning better and hopefully make a big difference in the way I feel when it is over. Next time I am sick, the doctor also wants a CT scan of my sinuses to see if there are any other issues going on.

Final stop at Johns Hopkins was for blood work - ten tubes taken in total!

Overall, I am very happy with this visit. The doctors were kind, they listened, they acted like they really want to help me, and they actually seemed to understand just how miserable I am on a daily basis. My spirits are up and I am excited to begin all of the various things that these doctors have suggested. New medications, new tests, new braces, and a new attitude. A regular exercise plan was recommended by every doctor to regulate and help pretty much every system in my body.

So I am determined to do what the doctors have suggested and hopefully start heading towards a better quality of life. Although not every question was answered, every prayer was answered. I have enough answers to help for now and to give me a place to move forward to. I am hopeful and I am happy.

Thank you so much to everyone who has prayed for me over these last few days, weeks, months, and years. I ask for your continued thoughts and prayers. What many don't realize is that this journey doesn't have a particular destination. It's a lot of trial and error. It's a learning process. It's about research. Even when I am officially diagnosed, there will always be new research and data to consider. So while I can't exactly have an end in sight, I have a goal that is further down the path, further into my journey, and further into finding comfort and peace. And I am learning daily to be happy with that.

Rosalee.

"Don’t forget to show hospitality to strangers, for some who have done this have entertained angels without realizing it!"         

-Hebrews 13:2

I've always wondered if Angels live among us. As guardians, as protectors, as a smile, as a hug, or maybe as an invisible force. I don't know if this is quite what God meant by this verse, but today I believe that I met an angel.

Mom and I decided to go down to Inner Harbor today and do some sight seeing. By the time we got there, we were famished and decided to find a place to eat right away. I was excited when we saw The Cheesecake Factory since I have heard rave reviews of it, but have never been. The food was absolutely delicious. 

Towards the end of our meal, an elderly woman was seated next to us. She came in alone carrying an umbrella and book and wearing a typical elderly woman outfit including pale yellow polyester pants, a floral print top, and knee highs with sandals. 

I always feel sad when I see an older person eating alone. I thought of this when I saw her, but didn't think much else. A moment later, mom leans forward and whispers, "Do you feel compelled to talk to that woman?" I immediately felt shy, but told mom to go ahead if she wanted to.

After a few minutes, mom leaned toward the woman and said, "Are you from here?" The woman then began to speak with a soft voice that expressed years of joy and life. In the course of the conversation, I found out that this woman was a twin and the youngest of nine children. Now at 77, only her, her twin, and one other sister are still alive. She also told us of her various health problems and surgeries, one of which was an open heart surgery. Finally, I learned her name - Rosalee.

Mom told her that we were there to visit Johns Hopkins for medical treatment. I told her I have a heart condition, but didn't say much else. (Mostly because explaining anything else is too difficult.) I asked Rosalee about her surgery and she said it was a triple by pass. She told me of the steel rods she had placed in her both chest and leg and invited me to feel them both. Surprised that a stranger was asking me to feel her chest, I reached up and placed a finger near her collar bone and felt the rod. 

Rosalee said many times she has asked God why he was allowing her to stay here, but each time he showed her a reason. Like taking care of her family and visiting the sick. She said she will stay here as long He needs her to and then when He has no reason for her to be here, she wants to be with Him. 

I told Rosalee that I will have open heart surgery someday. She sweetly listening and smiled and then assured me God would bring me through because He has for her so many times. She then said she would pray for me. At this point, I am holding back tears and glance over at mom, who has let a few flow down her cheeks.

The check then came and it was time to go. Before I left Rosalee, I asked if I could give her a hug. She said of course. As I leaned over and embraced my 77 year old angel, it didn't feel strange or weird. It felt familiar, like hugging my Mamaw, or maybe as if God was hugging me by using Rosalee.

She then smiled at me and said, "It was worth coming here today, just to meet you." 

I'll never know why Rosalee came to a tourist location on a Father's Day during the lunch rush to eat alone. I'll never know why mom had the urge to talk to her. I'll never know if Rosalee is actually an angel who arrives when someone needs a kind word, a smile, or hug to make them feel a little better. But regardless of all of this, Rosalee was my angel today. She provided some peace and love when I am surrounded by chaos. 

When mom first spoke to Rosalee, I thought we were being kind to her, that we might be something she needed, but really I think she was sent by God to be the something that we needed. 

Listen to your gut. Smile. Be friendly. You never know how you can help another person or be helped by them. Maybe you can be somebody's angel. Or maybe your angel is sitting and waiting for you.

From 30,000 feet above

Here I sit, writing a blog post from 30,000 feet in the air. 

After the ascension of the plane, (and after mom finally let go of my hand) I was overcome with awe at what a wonderful world God has created. I'm also amazed by the intelligence God has given humans and the abilities we have to create new technologies. How else could I be looking out above the clouds right now? 

Although things are calm right now, they certainly weren't a few hours ago. Daddy drove us to Louisville at 4:30 am. We arrived at the airport and said a prayer together before going in. Dad waved us off, but stayed with us through text message directions. (It's as if he thought we didn't know what we were doing!) We made it through security, but I was stopped and searched because clearly I was hiding a knife or bomb in my knee brace. 

Once we made it to our gate, we discovered our flight had been delayed due to maintenance issues. Comforting right? The flight was then canceled three minutes later. After standing in line for fifteen minutes, witnessing some VERY rude people take their canceled flight out on the gate attendants, and calling a service number, we found a new flight. 

While most people would be upset about a canceled flight, I was ecstatic to find out that our new flight first would go to Detroit, meaning that I get to add a new state to my list! Mom and I have decided to look on the bright side this week because we are good friends with Murphy and know that what can go wrong will. 

So as for now, I will enjoy my flight and my time with my momma. I am at peace as I look out my window, take pictures of the beautiful clouds, and feel God's presence all around me. 

I'm not strong enough.

“I hear religious minded people say all the time with good intentions. ‘God will never place a burden on you so heavy that you cannot possibly carry it.’

Really?

My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone. He will break your back and your will. He will buckle your legs until you fall flat beneath the crushing weight of your load. All the while He will walk beside you waiting for you to come to the point where you must depend on Him.

‘My power is made perfect in your weakness,’ He says, as we strain under our burden.
Whatever the burden, it might indeed get worse, but know this-God is faithful. And while we change and get old, He does not. When we get weaker, He remains strong. And in our weakness and humility, He offers us true, lasting, transforming, and undeserved grace.”

-Greg Lucas

When talking to people about my medical conditions, they often say to me:

"You're so strong."

"God wouldn't give you this if He knew you couldn't handle it."

"You handle this so well."

"God won't give you more than you can handle."

Excuse me? Then God must think I am Wonder Woman or someone with miraculous powers. I am just me, Stacie Lawrence, vulnerable, weak, and apparently misunderstood for being able to handle much more than I can. 

I'm not strong, but my God is. The only reason that I am able to face each day is because God faces it with me, holding my hand. The only reason I am at peace with my conditions, is because God has allowed me to be tested and experience some discomfort. The only reason that I am ready for heart surgery is because God is the great physician. The only reason that I am not scared of death is because I know God is waiting for me on the other side. He is my refuge. He is my peace. 

So as for this verse: 

"No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it." -1 Corinthians 10:13

I take this to mean a temptation (sin), not a struggle or trial. God provides ways to escape temptations of sin, but I don't believe that an escape is always available for a struggle or trial. What escape do I have from my heart condition? What escape do I have from my connective tissue disorder? No, this is an ongoing battle, an uphill fight, something I must deal with each day. It is a part of my life, it is making me better, but no, I cannot handle it on my own. 

God has used my life and more specifically the last 5 years to work on my heart. He has shown me the struggle. He has broken me down. He has watched me fall apart and call out His name, waiting for me to surrender. And so I have. I have surrendered my body, my life, my circumstances, my will, and my all... to my Lord and Savior who can make all things new. To my God who will guide me in the right direction and protect my heart, physically and emotionally. 

Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong. -2 Corinthians 12:10

If it is for His glory, I will gladly endure it. Not from my own strength, but from His. Because God knows that I am not strong enough on my own. 

I'm coming unglued.

"What is exactly is wrong with you.?

"Well... You know the glue that holds your body together? Mine doesn't work."

Typical question and answer with me. Sometimes this is just the easiest way to explain my illness and ailments. Most people are satisfied, but some inquiring minds want to know more. They want to know why, how, and what can I do to fix it.

I wish I knew; I guess God thought He made me well enough without glue.
Through genetic defect, most likely. (Thanks, mom and dad.)
Absolutely nothing. All I can do is treat my symptoms and hopefully keep myself from getting worse, but most likely, I won't be getting better.

So anyway, for you that care or want to learn something new, here is a slightly deeper explanation of one of my main issues, the connective tissue disorder. (We'll save the postural orthostatic tachycardia syndrome for later. Learn to say it,  learn to spell it, then we'll talk.)

So my collagen (glue) is defective. Collagen is throughout our entire bodies, around muscles and joints, protecting them and keeping things bound together. Without this working properly, you  begin to fall apart (literally) from the inside out.

Lack of collagen makes you stretchy everywhere. Internal organs, muscles and joints, and even skin. Everything seems to be a little more elastic and you can bend and move far past the normal range.

For example:
My ankles can almost lay flat on the ground due to the lack of collagen and ligaments in them.
My elbows hyper extend backwards.
My aorta (largest heart artery) has an aneurysm, making it twice the size of a normal person's.
My skin tears, bruises, and bleeds easily and heals slowly.
My knees, hips, wrists, ankles, elbows, toes, etc. pop a lot and sometimes even move out of place.

I actually am falling apart or as my Grandad says, "coming unglued."

So what do we do to "fix" my problems?

We maintain current ability and stability. We train my body to stop hyper extending and moving past the norm with physical therapy. We wrap and support joints so they won't come out of place and move around, causing pain.

We treat the symptoms. If I have pain, I take medication, I ice, I heat, I wrap, I compress, I stretch, I wear a pain patch, I do exercises, I wear a tens unit, etc. Anything that reduces pain, even just a little, is worth a try.

We keep working towards answers. We don't give up and settle for the answers of "we don't know what is wrong and we can't help you. Because I believe that somewhere out there, there is a doctor who will name my disease with certainty and will hopefully help me to feel better. Until that official diagnosis, we continue our search.

We participate in experimentation and research. When any opportunity arises to be a participant in a research study or experiment, I accept. Whether they need my blood, pee, spit, or any other bodily fluid, I freely give it in the hopes that these researchers will find a common genetic malfunction in me and the countless others suffering from a connective tissue disorder. I hope they never give up trying to find the genetic defects and maybe even a cure.

We pray. Prayer always helps whether it is for peace and comfort or healing, it makes me feel better. A spiritual well being brings on an emotional and physical peace that I can't explain.

We live life. I don't sit idly on the sidelines of life watching the world pass me by. I participate in as much as I can and live my life to the fullest. I enjoy what I can and watch what I can't. I know my limits and don't push too hard, but I don't give up and do nothing either. I have a happy balance and it works for me. I would rather have a short and well lived life than the longest one of watching everybody else live without me.

For now, that's all we can do, but it works for me. I stay happy. I'm in good spirits. Sure sometimes, I have my moments where I just need to cry or vent to a friend or pray a tearful prayer, but those moments of weakness give me strength. And that strength that God gives provides me with everything I need to just keep pressing on.

What you don't see.

Every day I wake up, just like you. Every day, I roll out of bed, maybe I little less gracefully than you. Every day, I take 8-10 medications, probably not like you. Every day, I decide how much I want to fight to appear healthy, not like you.

Some days, it's easier than others. Just like any illness, I have my good days and bad days. That's what people seem to have the most trouble understanding - I'm not always so sick, but I'm not always so healthy. "But you were fine yesterday."
"But today, I am not."

You see, maybe the reason I am not fine today is because I was yesterday. Sometimes it's as if I borrow tomorrow's healthy time to use on today, but you always pay later when you borrow from another day. Sometimes people forget I am ill because they don't see what goes on behind the scenes. They only see me laughing and enjoying myself in their company, but never give a thought to what I did or am sacrificing to be there.

A trip to the movies for example. For this simple activity, I climbed into my car and drove a half hour to the movie theater. Adjusting my position every few minutes to prevent back and shoulder pain. I popped a pain pill while driving because I knew I would be in worse pain later if I did not. I dried out my knee brace in the bathroom with the hand dryer because it was raining when I walked into the theater. I wiggled and squirmed through the movie so no limbs would fall asleep and my back wouldn't hurt too badly. I bumped your arm at least 20 times while picking up and putting down my water so I would not die of thirst or cough too loudly. I then hobbled out of the movie theater and back into my car where I settled in for another half hour drive home in pain. I climbed into bed with a heating pad, knee wrap, more pain medication, and pain as if I had just returned from running a marathon. But you saw me smile, you saw me laugh, you saw me have a wonderful time.

I don't fake the fun I have. I could not make it through the day without the love and company of my dear family and friends. But sometimes people don't think. Sometimes people don't understands. Sometimes you are misjudged for things out of your control. But I would not endure so much, if I did not want to spend time with you. Every time I leave my bed, let alone my house, it is a sacrifice physically and sometimes emotionally, but I do it every day. I do it because while "my outward 'man' is perishing, my inward 'man' is being renewed every day. And I know this light affliction is worth far more in the eternal weight of glory."

I may have to hold my body together with braces and tape. I may need heat and ice to move my joints and muscles. I may endure things other know nothing about, but it is worth it. The time I spend living far outweighs the time I spend trying to stay alive.

And the journey continues...

In 12 days, I will be flying to Baltimore for a week of appointments at Johns Hopkins Hospital. During this week, I will see a cardiologist, geneticist, gastroenterologist,  orthopedist, and allergist. What a week it will be!

I definitely have mixed emotions about this trip. I'm a little nervous, as I always am with new hospitals and doctors, but not as much as most people would be because this is all so routine to me. So routine, in fact, that just any one thing being slightly different than other hospital will thrill me. As I always say, I want answers.

I don't even care so much where these answers lead me, but that they lead me somewhere. Somewhere in a new direction. Towards an understanding, peace, and new perspective. I  feel like things have come together so nicely for this trip, that God definitely has His hand in it, as I believe He has had in my entire journey the last 19 years. So this trip begins a new journey...

A physical journey, no doubt, as Johns Hopkins is 543 miles from my comfy bed, where I sit right now. But more than that, this is an emotional and spiritual journey. I don't know in what ways yet, but that's the thing about these types of things, you never really know. You just experience, you feel, and then you react.

I hope I experience a new perspective at this hospital. I hope I feel God's presence throughout this journey. I hope I react with peace, patience, understanding, and faith in the one who holds my future.

Here I come, Baltimore. I'm ready, God.