But the Lord stood with me

Exactly one year ago I was ringing in the new year at Cleveland Clinic in the cardiac unit. I was high on pain medication, hooked up to monitors, and wearing my finest pajamas. My crew made it an occasion to remember with sparkling grape juice in fancy glasses, party poppers, and NYE hats. We took pictures, ate snacks, had a countdown, and made quite a bit of noise with our poppers and squealing. It's a wonder we didn't get kicked out of the hospital.

Tonight I am sitting in my own apartment with my new husband. No pain medications, no monitors, but I am wearing my finest pajamas. When I look down I see a mended heart and a ring on my finger, both reminders of the life that has been lived in the last year.

If I could summarize 2017 with one verse it would be:

"But the Lord stood with me and strengthened me."

-2 Timothy 4:17

I recovered from open heart surgery, but the Lord stood with me.

I laid in bed for three months, but the Lord stood with me.

I went back to work, but the Lord stood with me.

I completed months of cardiac rehab, but the Lord stood with me.

I planned a wedding, but the Lord stood with me.

I made some life changing decisions, but the Lord stood with me.

I traveled to Cleveland, Tampa, Montego Bay, and all over Kentucky, but the Lord stood with me.

I dealt with migraines, pain, and dislocations, but the Lord stood with me.

I was depressed, angry, and weary, but the Lord stood with me.

Yes, 2017 was full of life - both hills and valleys. Because despite all the hard things, so many good things happened too.

I got a new aorta that removes so much worry from my life.

I learned to be still, quiet my soul, and wait.
 

I worked hard. I made a difference.

I had a beautiful wedding - a day that was what I had always dreamed of. I gained more family and an amazing husband.

I saw new and exciting parts of our world.

I learned patience, acceptance, and contentment.

I was cared for, supported, and so so loved.

2017 wasn't at all what I thought it would be. It isn't the experience that brides usually have when they plan their wedding. It isn't usually what cardiac patients would experience during recovery. It was different. It was hard. It was beautiful. It made me laugh and cry at the same time. It made me call out to Jesus for healing and relief. It made me wallow and feel sorry for myself. It was exciting. It was new. It was exactly where I needed to be, exactly what I needed to experience to get to.. here: looking forward to the rest of my life, praising Jesus for my life, and hopeful that 2018 will be just as wonderful (but maybe not as exciting.)

Here's to 2018.

God is good.

God is good, all the time. And all the time, God is good.  After nearly a decade of waiting, it is time for my open heart surgery. When God needs to move, He sure can use some interesting methods to do so. He certainly doesn’t need our help.

In mid-November I went for my annual cardiology visit where I was told that things were stable – no significant change to my aneurysm. A short two weeks later, God decided we needed a second opinion.

I was at work with my coworkers when we decided to go out to lunch together. One of them volunteered to drive since they have an SUV and it would be roomier. I called shotgun and we took off. About half a mile up the road, we noticed a truck leaving its driveway rather quickly – with no intentions of stopping. My friend laid on the horn, but it was too late - the F150 slammed into our car, on the passenger side.  We later found out that this hit totaled her vehicle.

Frightened and shocked, the three of us piled out of the car. The airbags hadn’t deployed, but it was a big hit. We began to assess the situation and quickly noticed that there was NO DRIVER in the other car. There was no child playing that knocked it out of gear, no drunk driver, not a soul was in the vehicle… the owner of the truck was inside sleeping! How bizarre.

My job was to call the police and I did so with shaking hands and a racing heart. Something felt funny – it was like my heart couldn’t catch up. I dialed 911 and they soon had an officer on the scene. After things were taken care of, we went on to lunch. I just couldn’t calm down – I was scared and shaken up.

With my aneurysm in mind, Mom and I decided a trip to the ER would be for the best. We headed to Lexington to get an overall check up – especially on my heart. After 9 long hours, we finally got discharged. I had the usual accident injuries: head injury, strained muscles, but then the doctor said that the CT showed my aneurysm measuring significantly larger than my cardiologist had just two weeks prior.

This warranted some action. Mom gathered my medical records and overnighted them to Cleveland Clinic, where I had previously been seen, several years ago. They are number one for cardiology in the United States. If anyone knew what measurement was right and what to do, it would be them.

Within a few days (last Friday), Cleveland Clinic called and said they agreed with the larger measurement and wanted to see me – the following Monday (this past Monday).  Woah – that was quick! The rapid appointment set up told me that the surgeon must be considering surgery as a possibility or else it would have been postponed just a little while.

So mom and I left Sunday to make the trip to Cleveland. Sunday was mom’s birthday and this was the second time she had spent it at Cleveland Clinic with me. We arrived and had a full day of testing on Monday. Tuesday was the day we would meet with the Cardiothoracic Surgeon, Dr. Svensson.

Dr. Svensson was kind, intelligent, and had a pretty cool accent (he is from South Africa). He stated that I am at the threshold for surgery, but that with my connective tissue disorder and upcoming nuptials, he thought surgery was the best option. And just like that, so nonchalantly, he and I signed some forms and his assistant came in to schedule my surgery. I began to cry, but quickly had to suck it up – there was a surgery to plan! I just felt so relieved to have finally heard the words I had been waiting for, “Stacie, it’s time.”

It was a whirlwind from there. We set my surgery date for Tuesday, December 27^th. This meant my preoperative appointments had to be done before I left Cleveland, which caused us to spend another day in Cleveland. This way, we enjoy Christmas in Kentucky, head to Cleveland the 26^th, and then go straight in to surgery on the morning of the 27^th.

And so here we are. I’m on my home from Cleveland, typing this post on my laptop. I watch as cars drive past and open fields turn into city skylines. Somehow in the midst of this storm, I feel such a sense of peace. I wonder what God’s plan has been all this time. Did He have one or did He just decide spur of the moment? Whatever He did, I know it is His timing.

In my mind here is how it went… God had hoped my initial cardiology visit would clear things up. Maybe he thought the technician or doctor would notice the increased size. So when that didn’t happen, maybe God was looking for the perfect opportunity to get me to the doctor. And as I rode down Main Street with my coworkers, God saw that F150 there and He just gave it a little nudge. The nudge He knew I needed to get to Cleveland. I’m not sure if that’s exactly how it happened or not, but I know God had His hand in this regardless.

All throughout the Bible, God used ordinary people, animals, and objects to show His glory. He used a teenage girl to be the mother of Jesus, He used a talking donkey to lead a man down the right path, and now He has used a driverless vehicle to guide my life.

So dear friends, how can you help? I know you must want to do something. I ask you to pray… pray hard. Pray for my family to stay sane during the lengthy procedure, for their safety when traveling to be with me, and for their peace of mind and heart. Pray for me. Pray for God to calm my nerves, that I will handle the surgery well, and have a speedy recovery. And please pray for Dr. Lars Svensson – the man who will quite literally have my heart and life in his hands. Although Dr. Svensson is a world-class surgeon who has performed more than 10,000 surgeries in his career, my hope is in Jesus because He is a world-class savior who holds every life there is and ever has been. It is in HIM that I find my peace and comfort.

Of course if you want to send cards, gifts, or well wishes I will gladly accept those too! I will have my mom read Facebook messages and text to me once I am coherent – please feel free to fill my wall and inbox with prayers, love, and encouragement. If you want to physically mail something or get something to me, you can call the gift shop at Cleveland Clinic or mail cards to:

Stacie Lawrence

Cleveland Clinic

9500 Euclid Ave.

Cleveland, OH 44195

Thank you for your continued love and support. I would not have made it through the last decade without my amazing family and friends. I love you all dearly and I look forward to seeing you when I am back in Kentucky!

God is good, all the time. And all the time, God is good.

"And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns."   -Philippians 1:6

Photo taken January 11, 2011

28 things about my invisible illness

List articles are so popular right now. So here are 28 things relating to my illness that you may not know. What else would you like to know? Tell me and it could be featured in my next blog post.

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1.) The illness I live with is: Dysautonomia (POTS), Ehlers-Danlos Syndrome (EDS), Polycystic Ovarian Syndrome (PCOS), Bicuspid Aortic Valve (BAV), and an Aortic Aneurysm. (I’m trying to get the whole alphabet!) What this means is my body can't control automatic functions, heart rate, blood pressure, temperature, etc (POTS). My body is lacking collagen, which means joint pain, dislocations, and I am easily injured (EDS). My uterus does not function properly, creating pain, annoyances, and sometimes cysts (PCOS). I have chest pain and cannot play contact sports so that my aneurysm won't burst (BAV and aneurysm).

2.) I was diagnosed with it in the year: POTS - 2012, EDS - 2012, PCOS - 2008, BAV - 1996, Aneurysm - 2007.

3.) But I had symptoms since: MY. ENTIRE. LIFE.

4.) The biggest adjustment I've had to make is: Making better decisions based on what my body needs as the time. Not staying out late, pulling all-nighters, not overwhelming my schedule, taking my medicine regularly, and keeping a low-stress life are things I STILL struggle with.

5.) Most people assume: That I am healthy. I do not look sick, therefore I could not possibly be sick. I wish people were more informed about invisible illnesses.

6.) The hardest part about mornings are: Functioning before 10am. It takes my body a lot longer to start moving and working than a normal person. This means 30 minute bathroom trips, inching along as I get dressed, feeling nauseated and unable to eat, and so many other things - basically anything that required functioning normally.

7.) My favorite medical TV show is: Grey's Anatomy. The have actually had patients with aneurysms and I believe one with EDS - so cool!

8.) A gadget I couldn't live without: Toss up between my heating pad, tens unit, and laptop. My heating pad keeps my swelling down, tens helps with pain, and my laptop keeps my hands from cramping up when I take notes in class.

9.) The hardest part about nights are: Being comfortable enough to sleep and not waking up with a dislocation. This has improved dramatically with my new bed!

10.) Each day I take: 10-12 pills. I sometimes also wear a brace, compression sleeve, pain path, tens unit, SI belt, or taping. It just depends on the day and what part of my body hurts the most.

11.) Regarding alternative treatments I: Feel that they may work for some people. However, I have tried almost everything that I have heard will help my issues. If I am not already drinking your magic juice, using your oils from Africa, or standing on my head for 10 minutes each Tuesday when it is partly cloudy...there is probably a reason.

12.) If I had to choose between and invisible illness or visible, I would choice: Invisible. I may get judgmental stares for using the handicapped parking, but I am able to blend in when I choose to and that is nice to have the option. Sometimes in the right setting, I forget I am sick for brief moment.

13.) Regarding work and career: I fear that I won't be able to handle a "real" job. I am nervous that I won't have an understanding boss or coworkers or that I will be too sick to perform my job responsibilities. I have been blessed so far, so I have to trust that God has a plan.

14.) People would be surprised to know: That I don’t always handle everything well. I usually have a smile on my face and sassiness to spare, but sometimes when it gets rough, I do have breakdowns. I get sad, I get discouraged, I cry. But then I pray, pick myself up, and keep going.

15.) The hardest thing to accept about my new reality has been: That I may not be able to have children. Between my aneurysm, my connective tissue disorder, the potential of passing these on to a biological child, and the risk of very serious complications, I have made the decision to not have children. I want to be a mama so bad and I feel the calling to open my home and heart to a child that I didn’t bear. I plan to adopt someday – hopefully multiple children.

16.) Something I never thought I could do with my illness that I did was: Travel. I have a passion for traveling the world, but it is more difficult with my illness. I haven’t let this stop me though – I just have to plan more carefully than most people would have to.

17.) The commercials about my illness: Do not exist. I am what is known as a zebra – this means my condition is rare and it is not common for people to have heard of it.

18.) Something I really miss doing since I was diagnosed is: Playing volleyball! I played for 11 years, but finishing my senior season was really rough. I would collapse on the floor after games, hardly able to breathe. It would take my body days to recover. I tried playing intramurals at EKU and I made it through our season, but I am now officially retired!

19.) It was really hard to have to give up: Caffeine! Since my medical issues became more serious, I gave up drinking pop. I used to drink 6 Dr. Peppers a day so this was a big adjustment. The caffeine wasn’t good for my heart and the carbonation wasn’t good for stomach. I now have the occasional iced coffee, but overall I don’t drink caffeine.

20.) A new hobby I have take up since my diagnosis is: Crafting. I now enjoy calmer activities like coloring, painting, scrapbooking, sewing, etc. It gives me something to do in my spare time that is safer than physical activities.

21.) If I could have one day of feeling normal again I would: Go to an amusement park! I miss riding roller coasters and rides with large drops. I can’t ride anything above the kiddy rides because of my aneurysm and the pressure it would put on my chest. Before my diagnosis, I LOVED roller coasters.

22.) My illness has taught me: To see the best in others. I can be critical of people, but after suffering from an “invisible illness” I have learned to be slower to judge. You never know why a “healthy” looking person is using handicapped parking, taking an elevator up one floor, or using some type of assistive device. Everyone is fighting a battle you know nothing about.

23.) One thing people say that gets under my skin is: You should try to exercise, drink more water, stop eating sugar, take this vitamin…fill in the blank. People tend to assume that I can somehow do something to get better. I am chronically ill – it is not a cold.

24.) But I love it when people: Actually take an interest in my illness. It’s one thing to ask how I’m feeling, but it’s even better to ask more detailed questions and try to understand what I am going through and what makes my body so different. I’m not shy about my illnesses – I actually love to share with others. Don’t be afraid to ask!

25.) My favorite scripture that gets me through tough times is: 2 Corinthians 4:16-17 – “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” This reminds me that this isn’t forever and it will be more than worth it when I get to Heaven.

26.) When someone is diagnosed I’d like to tell them: It’s going to be okay, but you have to fight. You have to be a self-advocate. You have to try hard each day. Sometimes it will be hard to find the motivation and energy to get out of bed, but most days you have to because you have a life to live. Your life has value, even though you are ill.

27.) Something that has surprised me about living with an illness is: The unpredictability of my health. I can be fine for months, but then spin into a rough patch for a few days, weeks, or months. It’s frustrating, but I am thankful that I have more good days than bad.

28.) The nicest thing someone did for me when I wasn’t feeling well was: Bring me flowers and chocolates, pray with me, hold my hand, watch movies with me, bathe me, hold my hair while I threw up… what hasn’t been done for me? I am so thankful for my friends and family who fight so hard for me and with me.