My name is Grace. I’m so happy you have somehow found this page. No matter how you found your way here, I want you to know that it was not by coincidence. You see, I don’t believe in coincidence. I believe in an all-knowing God who has a purpose, reason and plan for absolutely all things–both big and small. He has a reason for you reading these words right here and right now. I want you to know that the words I write on this page come from an authentic place in my heart from a time of brokenness in my life, when I have had to hold on to God for dear life. I don’t want this place to only be a blog. I want it to be somewhere you can mourn with me, cry with me, laugh through the pain, dance with me, praise God through the storm with me, experience life, loss and pain with me, and walk through suffering with me. No matter what you are experiencing, I want you to feel free to open up your heart to Jesus with me. You are loved, you are adored, and you are cherished by a sweet Savior. So walk with me, through whatever may be breaking your heart and making you feel alone tonight. I wish I could join hands with you myself. But for now, I pray you can just feel Jesus sweep you up in His arms and hold you in the darkest of nights and lowest of valleys. Before we dive in together, I thought you might want to know a little more about me and my journey, so you can feel connected as I pour out my heart to you.
In July of 2011, after suffering with months of symptoms such as migraines, nausea, exhaustion, dizziness, back pain, vision problems, and vomiting, I was diagnosed with a pituitary tumor. Originally, specialists thought I had something called Cushing’s disease. After several scans and tests, it could not be proved that what I was suffering with was Cushing’s disease. Although I still have scans of the tumor to this day, doctors could not prove that the tumor was the cause of my problems. So, I ended up at the mayo clinic for two weeks of exhaustive testing and endless doctor’s appointments with just about every specialist you could possibly imagine. After two weeks, I was finally diagnosed with something called Postural Orthostatic Tachycardia Syndrome. Say what? You have probably never heard of this condition. Most people haven’t. POTS syndrome, for short, is a form of autonomic dysfunction, meaning that it is a dysfunction of the Autonomic Nervous System, ANS for short. The ANS controls things the body doesn’t think about like heart rate, digestion, breathing, pupillary response, urination, and the body’s flight-or-fight response. So when people have POTS, all of these functions are misfiring in the body. It affects so many daily functions and is oftentimes very debilitating for the person suffering with the condition. POTS syndrome, for example, has been compared to chronic obstructive pulmonary disease (COPD) and congestive heart failure by doctors specializing in POTS syndrome. For many people with POTS, when they stand up, their heart rate increases and their blood pressure decreases (blood pressure decreasing doesn’t happen to everyone, but it does happen for many). The treatment given? Medication (particularly a beta blocker to slow down the heart rate), exercise (to get the blood to flow faster), fluids (2-4 liters a day), and advisement to eat a lot of salt (so much so it is quite nauseating). Well, when I was first diagnosed, this seemed like something I could handle. I was hopeful–four steps and I would feel better and see improvement! I was also told that most teens who get POTS eventually grow out of it in 10 or so years. This encouraged me tremendously when I was first diagnosed. There are several causes for POTS. Some people get POTS from a virus like mono, or from some sort of a trauma to the body, and for some it is unknown of the cause. The cause of my POTS was never fully understood but a few of my doctors believed it was from a hormonal imbalance in my body.
Well, months passed on, I was doing all of the treatment for the POTS, working as hard as I could, and I only felt worse. In March of 2012, I became so sick, I was admitted into Children’s Hospital of Atlanta, unable to hold any food or fluids down. Long story short, I was diagnosed with Gastroparesis (which is very common for people with POTS syndrome). I was placed on an NJ feeding tube for about six months and then eventually placed on a GJ feeding tube (which is placed in your abdomen). The POTS had caused the motility in my stomach to be delayed, and I was unable to digest my food, which is why I would get sick on everything I ate by mouth. Since I was being fed in my Jejunum through the feeding tube, I felt hungry all the time. It was an extremely tough year because I was completely tube fed for that time, and I felt miserable. In January of 2013, I ended up receiving a Gastric Pacemaker which ended up helping me digest my food. I can’t express to you what an absolute miracle from the Lord it was–to be able to eat again. I still have my Gastric Pacemaker to this day, and it has been such a blessing! In February of 2016, I had my battery replaced for the Gastric Pacemaker, and I also had a Sacral Nerve Stimulator placed in my back. The POTS affected the motility in my colon as well, just like it affected my stomach. Both pacemakers have been functioning well and helping my dysfunctional digestive system. I have had to have nine surgeries since I was diagnosed in 2011, countless tube changes, hospital stays, tests, procedures, scans, nights in the ER, trips to Nationwide in Ohio, Charlotte, the Mayo Clinic, Children’s Hospital, but through each surgery and procedure, God has drawn closer and closer to me in the darkness .
As for as the POTS, it has affected more of my body than I would like to admit to you. I have been struggling with a form of migraine known as visual aura for about two years now. I have grown close to my neurologist as we have tried an endless string of medications and dosages as these auras have affected my vision. Suffice to say, it has affected my schooling in a huge way. I have barely finished high school. But that was never the most important thing to my family and me. It was always my health first. I don’t think Jesus cares about how many honors classes I took in high school and what grades I made or what colleges I applied to ( I am not saying He doesn’t care about those things, don’t get me wrong). I think He cares more about what I learned when I hit rock bottom. And what I felt when that one doctor said I would never be healed. I think He cares more what I learned in those moments than what I learned in an AP Euro class. I think those things were more important to Him for me during this time in my life. So, I’m not the most successful or accomplished. But through each painful night, the Lord has taught me so much. Lessons I would never trade for a “normal high school education”.
So, you must be wondering, where am I in my life right now? Well, I wish I could tell you that I am healed and happy and writing this in a field of daisies. But that could not be further from the truth. I am in the Valley, sweet friend. Some doctors believe I won’t get better until we take that tiny pituitary tumor out. Some think this will be a lifetime struggle for me. Some doctors have hope that one day I will get better. For me, I just have to believe it’s all in the Father’s hands. I will tell you one thing, though. No matter how long this suffering will last. No matter how unbelievably hard it hurts. No matter what I will face. I will praise Him to the end. I will make His name known and His kingdom great–that is what this is all about. I will stand with arms wide open awaiting and welcoming whatever He has for my life. May none of my suffering be in vain. May my broken life be a beautiful offering to Jesus, who bled and died so that I may live for Him.