Over the last few days, in the midst of breakdowns over the grief of the possibility of future children and nerves about surgery, I had to stop for a few minutes and be overwhelmingly thankful for all the blessings God has put in my life and the many answered prayers. For Sean and me, 2015 has been the best year yet. Yes, it’s been difficult in ways we cannot put into words, but we can also clearly see God guiding our path and giving us the wisdom to recognize His guidance, our growth and His will for us. I want to list some of the huge blessings of our year so far in hopes that you can celebrate the victories with me!
***(This is a long post so please BEAR WITH ME! There are some medical explanations some of you have been asking about and will be looking for, everyone else feel free to skim those parts! I’m flying to Washington DC tomorrow and having surgery on Wednesday the 9th so be praying for that and look for updates!)***
As most all of you know, I’ve been extremely sick with chronic Lyme and all its additional conditions for over three years now; However, what many people DON’T know is that I wasn’t healthy for most of my life even before that fateful day when I got two teeny indistinguishable tick bites. As a child, I never had a strong immune system. I always had odd issues that came and went. I would pass out at an amusement park on a hot day or at church camp every year when we went on a long hike. I got itchy when I stood in lines. I had trouble breathing and was diagnosed with asthma. I couldn’t run very far because my heart would pound and my head would throb and I would gasp for air. I was clumsy and had poor balance and frequent mildly sprained wrists and ankles. My bladder would become inflamed and irritated and I would make frequent bathroom stops. My joints were always a little sore and stiff and popped when I moved. My heart would race inexplicably. I had a slowly expanding list of food intolerance, bloating and upset stomach often and severely. I caught strep throat frequently. I had numerous “mono-like viruses” that left me weak and lethargic. I had migraines and chronic sinus problems. It was annoying and frustrating, but not huge. It didn’t keep me from functioning, and when it did it didn’t last too long. I would go to the doctor like anyone else and get some sort of explanation or none at all and keep going.
Things worsened after I graduated from high school. I had horrible, debilitating stomach problems all through college, some days to the extent that I couldn’t eat anything and was in and out of the bathroom so often I had to miss class or run out in the middle. I was struggling so hard to juggle my schoolwork, my social life and my declining health, but because of insecurity I didn’t feel like I could tell my professors or my friends how bad it was or that I was experiencing it at all. I had increasingly severe bladder pain and was diagnosed with interstitial cystitis, chronic inflammation of the bladder. My gallbladder stopped functioning and I had surgery to have it removed in hopes that my stomach problems would lessen, but instead it only made things worse. I had these odd aches and pains and a slew of things that puzzled my doctors, but being an active stubborn girl, it was nothing I considered as major, so I ignored them and pressed on as best I could. The summer after Sean and I were married, I got the two little bites that changed nothing and yet changed absolutely everything. It was a fast-paced nightmare with symptoms worsening and new issues popping up left and right over a few months until I was left where I am today – out of school, out of work, in a wheelchair when I leave the house, in constant excruciating pain, floundering for answers.
The years of odd health issues and especially the last three of extreme illness have been more difficult than words can say. My faith was rocked, my relationships and beliefs of myself and my perspective of the world challenged in every possible way. I’ve doubted, grieved, sobbed and felt completely and entirely broken, but friends, God does beautiful things with brokenness; that’s one of my favorite things among many about my God and savior, and I am living proof! I wouldn’t change my story or go back to the person I was before this experience because I have learned and grown in a million ways that I cherish. I know without a doubt that God is holding Sean, Charlie, our family and I, and making his path for us clear with each step. We trust him wholeheartedly. We have always looked for signs of His presence and His blessings throughout this journey, but this year especially they have been EVERYWHERE!
Early this year, God directed me on the path to finding a new doctor in Dallas, Dr. Suleman. He was able to explain to us the heart racing, difficulty breathing, exercise intolerance, AND stomach problems I have dealt with for as long as I can remember. He did what all the doctors I’ve seen could not. He diagnosed me (HERE COMES THE MEDICAL JARGON, YOU’VE BEEN WARNED!) with severe POTS (Postural Orthostatic Tachycardia Syndrome), Gastroparesis, and MALS (Median Arcuate Ligament Syndrome). POTS causes my heart to race and my blood pressure to drop when I go from laying to sitting and especially when I stand. It causes vertigo, dizziness, fainting, hyperventilation, and is the reason why my legs get splotchy and itch like crazy until I sit down and put them up. The mottled itchy legs are my body’s way of warning me of the changes in heart rate and blood pressure and forcing me to sit down before I pass out. One of the things I have been the most annoyed with for the last three years, I’m actually extremely grateful for now. How cool are our bodies? POTS causes poor circulation and many patients also have Gastroparesis, which is stomach paralysis that causes reflux, bloating, nausea, constipation/dairrhea, upset stomach and food intolerance. Median Arcuate Ligament Syndrome is a rare congenital birth-defect that we learned means that my median ligament in the abdomen that is supposed to run parallel to the celiac artery was malformed across the artery and is severely restricting blood-flow through my celiac artery; in turn, the ligament restricts blood flow to my stomach, intestines, liver and kidneys. It causes severe reflux, nausea, intense pain, bloating, constipation/diarrhea, food intolerance, and worsens the POTS and Gastroparesis.
For those of you who are mainly healthy, it may be hard to understand how a diagnosis can be good news or something that you crave, but when you go years and years of your life seeing doctor after doctor without understanding why your body does what it does, it can be such a relief to finally have a reason and an explanation that makes sense. When I got all of that information in February-March of this year, we were overwhelmed but thrilled. We knew that information would be very important in our journey to get me healthy and functioning again.
Back in March around the time we learned all of my new diagnoses, Sean and I were happily living in our little apartment on campus at Oklahoma Christian University where he worked as a Resident Director for three years. We had plans to stay there for at least two or three more years because we were comfortable, and Sean had the ability to be home and take care of me most of the year; and when he couldn’t, he and my parents met halfway between Edmond and Tulsa and I stayed with them. I went back and forth a lot for doctors’ appointments in Tulsa and for my service dog (my biggest blessing of 2014) Charlie’s lessons with his amazing trainers at Spirit Ranch, also in Tulsa. One day, we both received a message from a friend telling us about an open youth and family ministry position at the Crosstown Church of Christ in Tulsa. Sean has a youth ministry degree and we both grew up in the Tulsa area at churches that are very similar in heart to Crosstown. We both immediately felt an overwhelming sense of conviction that Sean should apply for the job he wasn’t even seeking. A few short months later, Sean was hired for the job, and a week or two after that we had packed up and moved in with my parents in my hometown of Bixby in south Tulsa. It has been a whirlwind of a summer, but Sean absolutely LOVES his new job, the kids in his youth group and the congregation as a whole. We have been so wholeheartedly welcomed and embraced and immediately felt at home with our new church family. I have never felt more instantaneous love, support and understanding for my chronic illness, and words cannot describe what a blessing it is to be at Crosstown! On top of that, Sean and I are living TOGETHER full-time since our first few months of marriage. WE LOVE IT! We had no clue what God was putting together for us and it blows us away. His plans are greater than mine.
Over this crazy summer, my POTS doctor, Dr. Suleman also directed us toward an excellent geneticist/doctor who recently clinically diagnosed me with EDS (Ehlers-Danlos Syndrome), (CAUTION: MEDICAL JARGON AHEAD) a connective tissue disorder which explains my clumsiness, joint issues including popping, inflammation and hyper-mobility, sensitive skin that bruises and scars easily, slow-healing, skin rashes, difficulty swallowing, fatigue, poor immune system, GERD (reflux), Post-Nasal Drip and sinus issues, and is the reason why I suffer from POTS, Gastroparesis and MALS. It’s even the answer to my spells which we thought could be seizures. They’re actually caused by something called Mast-Cell Reaction which is a type of rare systemic allergic reaction causing the throat to swell, trouble swallowing, trouble speaking, inability to focus, loss of control of limbs, rashes, etc. In the process of me seeing Dr. Suleman, my little sister Ashlyn saw the same doctor and geneticist and was also diagnosed with POTS, Gastroparesis and EDS which explains a lot of the symptoms that she has been experiencing in the last several years especially. That is HUGE because we want as much information as we can get so that she can function better and keep from becoming a severe case with other conditions like me. The geneticist is going to do extensive blood work on me and my parents which will test thousands and thousands of genes to find even more answers for us. After that we will know what genetic issues that my sister will need to be tested for as well. Again, probably seems like a weird thing to be excited about, but yes, we most definitely are!
In a matter of months, we found a new job and a new family, moved to Tulsa, AND I finally received an explanation for nearly all of the odd and painful issues I’ve dealt with since I was a little girl, and that information is indescribably VALUABLE. It will be crucial in helping us find a way to get me back to functioning at a much higher level, part of which will involve surgery to clip and remove my median ligament from around my celiac artery; another thing that makes 2015 a huge year for Sean and me. Dr. Suleman directed us to a surgeon in Washington D.C. who is one of the best in the nation at performing this rare procedure laparoscopically. We had plans to have my surgery done here in Tulsa, but the two excellent surgeons who we planned would work together would likely end up having to perform open surgery which would involve an incision from my sternum to my pubic bone. The surgery has never been done laparoscopically in Oklahoma before and the chance that the surgeons would have to open me up is extremely high. Dr. Suleman cautioned us against an open surgery because of his now-confirmed suspicion that I had a connective tissue disorder, EDS. Thank goodness we heeded his advice because as aforementioned I was just diagnosed with Ehlers-Danlos Syndrome a few weeks ago, and it’s highly likely because of my EDS that an incision that large would not heal and would stay open for months causing complications and a much greater risk of infection.
The surgeon in DC is excellent and has had a very low complication rate which gives us confidence even though it’s always scary to fly with me so sick and to be in a hospital hundreds of thousands of miles away from family and friends; however, we feel confident that God led us to this surgeon for a reason! I trust that no matter what happens, God is holding me and I will be okay. One thing I’ve learned from chronic pain and suffering is that time flies even when you’re not having fun. That can be a hard reality to face as the time you desperately want to use for the many goals, plans and dreams you have for your life slips by you; and yet, it’s also a blessing because I know that even my hardest of days will be over soon enough and that gives me strength to persevere. We will be flying to Washington DC TOMORROW September 6th, meeting with the anesthesiologist and surgeon in person for the first time on the 8th and my surgery will be on the 9th, so please be praying and sending good vibes my way on those days! I have to arrive at the hospital at 5:30 am the day of surgery which is EARLY for me. The surgery will begin at 7:30 am and should last somewhere between 3 and 4 hours. We anticipate flying home on the 18th. The surgery should restore blood flow through the celiac artery to my stomach, intestines, liver and kidneys which hopefully will boost my immune system, digestive system, lessen my Gastroparesis and pain, aid in my overall circulation and maybe even help with my POTS as well. If I’m able to digest and use the nutrients from my food, supplements and medications at a much higher rate than before, hopefully we should have better luck treating my Lyme and boosting my body as a whole which would be HUGE. This surgery is a scary thing, but an equally if not even more exciting one so be praying fervently over it.
My surgery isn’t the only exciting thing happening for us this fall! Sean and his brother Chase have been working hard on an original board game called Rivals: Masters of the Deep for a long time now. Countless hours have gone into brainstorming, test-play, and all the additional plans involved in bringing this game to life. They have added and improved so many aspects of the game and further developed their plans for it to be funded through Kickstarter, an online fund-raising website. Supporters will be able to go online and read about the game, pledge money to the project and pre-order a copy of the game along with a lot of opportunities for additional perks with additional money pledged. The Rivals Kickstarter will relaunch bigger and better soon so please keep an eye out for that! It’s going to be awesome!
Also, I am excited to announce that on September 30, 2015 we are scheduled to close on our FIRST HOME! It’s a cozy house in Bixby, just a few minutes down the road from my parents’ house (which will be wonderful as they help us out so much, and I stay with my parents whenever Sean is busy). It’s in a gated neighborhood which makes us feel safe and comfortable, and we can’t wait to move in and get settled! Even better is the fact that the sellers are a couple that we know so we have been even more excited and comfortable going through the daunting process of buying our first home because they’ve been so great. Those of you who know me will realize that I can’t wait to get settled and comfy in our house in the fall, and then… DECORATE OUR HOME FOR CHRISTMAS!!!!
So far, 2015 has been a year of huge blessings and answers to prayer for us, none of which we saw coming or had planned for ourselves. My hope is that you will rejoice with us and join us in prayers of thanksgiving and anticipation for all the big and exciting changes in our lives so far and those ahead of us and for everything we have learned along the way. Change is exhilarating but also scary; yet, we know that whether the twists and turns in our lives are positive or negative, our Father’s plans for us are elaborately laid out before us, and those plans are bigger and more extraordinary than any we could possibly create for ourselves. Take hope and courage today in the love God has for you. Know that he loves you and that his son died so that you could have life and have it more abundantly. Trust and obey Jesus’ teachings because in your faith in all circumstances you will find hope and joy overflowing. It’s absolutely breath-taking and I couldn’t be more thankful.
Scriptures for today:
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”
Jeremiah 29:11-13 NIV
“Those who heard Jesus use this illustration didn’t understand what he meant, so he explained it to them: “I tell you the truth, I am the gate for the sheep. All who came before me were thieves and robbers. But the true sheep did not listen to them. Yes, I am the gate. Those who come in through me will be saved. They will come and go freely and will find good pastures. The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.”
John 10:6-10 NLT
“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”
Romans 5:1-5 ESV
“I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”
Romans 8:18 NIV
“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God. And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
Romans 8:26-28 NIV
Sean and my mom will be trying to post updates during and after my surgery so be on the lookout for those. I’m thankful for you!