Hello, family and friends. It’s been a long time since I have updated you on my health, and I realize that I have such a loving and supportive community who cares about these updates. So here I am, sitting down to type out a much-overdue update. There is a significant piece of good news, so you may want to read this!
(Serious props to you if you read every word-it will likely be long since I have waited too long to share an update.)
Back in March, I was on TPN(total parenteral nutrition), receiving all of my nutrients in IV form through my PICC line. (I had been on it for a month at this point) My gastroparesis (stomach paralysis) was in a very bad spot, my stomach and intestines would hardly move at all. I was incredibly weak, in constant abdominal pain and struggling with nausea daily. Any time I attempted to eat anything, I would experience unbearable pain/nausea and my stomach would swell/become distended and make me look as if I were pregnant. Occasionally, I would vomit undigested food. Even drinking small amounts would make me feel so ill.
I was very fatigued, was dealing with an increase in my fainting episodes and my vitals were never stable. I slept more than I was awake, for the most part. TPN had started to cause complications, and I ended up in the emergency room with classic gallbladder symptoms, and experienced several more of these attacks. My liver enzymes had also started to elevate (bad news). I had a hard time trying to attend any of my classes or fieldwork regularly, and rarely got through the assigned readings/coursework on time.
Watching online services that Gateway (my church) streamed was my source of encouragement, as the weekends were needed for complete physical rest. My body tended to get its short burst of slight energy in the evenings, so attending Chi Alpha (a Christian campus ministry) and going to small group when I was able to during the week encouraged me greatly. No matter how sick I was, my spirit longed to be in the presence of Jesus with fellow believers, so I chose to push my body for the sake of my spirit.
Just as all of this was happening, I received a call from my insurance company stating that my GI doctor (who I trust and had been with for nearly 3 years) was no longer contracted with them after he switched practices-meaning that I could no longer see him.
This was the man who had compassionately listened to me at each office visit, and treated me like a person rather than a number. He had taken care of me every single time that my stomach ceased to do its job. For 2 years, every 6 months I would go under anesthesia and he would be in the operating room, injecting my stomach with what it needed to be semi-functional. When this stopped working, he showed compassion and concern, but placed me on artificial nutrition so that I could continue to live. I trusted this man with my life, and it felt like the floor dropped from beneath me when I found out that I was losing him from my medical team. This felt like the worst thing that could be happening at this moment. But God knew what He was doing.
Understandably, I was scared and uncertain of what was to come. I asked for the girls in my small group to pray for God to lead me to a doctor who was kind and knowledgable about my illnesses. We prayed together for his wisdom, and for me to find this doctor sooner rather than later. But we trusted the Lord and His timing.
I was given a grace period for my TPN prescription to still be written by my previous doctor, but I began the search for a new GI doctor. I asked my friends on Facebook about gastroenterologists that they would personally recommend, and did extensive research on each recommended physician. Ultimately, my previous GI doctor referred me to one of his colleagues and I trusted his judgement.
On April 12, I saw this new doctor. Immediately, he stated that he didn’t want me to be on TPN any longer than I had to be. I knew from a previous flare of my illness when I was away at Texas Tech, that another option (and a safer one) was a feeding tube. We discussed this option, but he was adamant about trying a medication that wasn’t originally intended for gastroparesis patients but had shown promising results in research studies. If we used it in conjunction with a drug commonly used to treat my condition, this new doctor was convinced that I would significantly improve.
Up until this point, I thought I had tried (and failed) every medication option for my condition. I thought that the only options left were surgical, either a permanent feeding tube in my abdomen or surgery to cut part of my stomach in an attempt to get it to digest by gravity. Neither of these surgeries were guaranteed to improve my quality of life or to make me better, and could cause their own complications.
To make this story shorter, I will try to summarize the events from April until now. I had (what we thought was) a reaction to this promising drug, when I tried it on an outpatient basis. I was told to immediately stop it. (It turned out to be an interaction with another one of my meds) I then was given an NJ feeding tube that skipped my stomach and went to my small intestine (just like the one that I had in 2015) and was placed on tube feeds. It was a much safer form of nutrition than TPN, but still not ideal. Even tube feeds made me feel ill, although not as bad as eating made me feel. I had learned to be content, but this new doctor of mine was not satisfied with me being tube-fed. He had a determination like I had never seen before.
At one of my follow-up appointments, he said that his new plan was to admit me to the hospital to re-trial the medication that could help me. I was understandably concerned, considering that I had reacted adversely to this same med just a few weeks prior. He reassured me, saying that this is why I would be inpatient, to be closely monitored.
I then spent 9 days inpatient for what was supposed to be a 3-4 day trial. (My body had other plans) My doctor had my feeding tube removed on day 1, which scared me because we had no clue if this new treatment option was going to pan out. He just kept telling me that it would work, because he had seen it work for several of his patients before me.
We were pleasantly surprised when I no longer reacted to this new med, once the med that we suspected an interaction with was removed from my treatment plan.
Over the course of that hospital admission, I received many IV infusions of a medication to promote stomach/intestinal motility, countless bags of IV fluids with dextrose and potassium to keep my blood sugar from tanking and my heart functioning as it should, bags of normal saline to keep my blood pressure from plummeting and many doses of pain and anti-nausea meds to keep me comfortable as I attempted to gradually eat more than I had in months. A dietician visited me each day, advising me on foods/liquids to try and keeping track of the calories/nutrition that I consumed.
Things got worse before they got better. Every time I attempted to eat, I was still miserably ill. The functioning of my intestines had slowed to a near halt, and gave us a scare. By the end of my hospital admission, I had lost most of the weight that I had restored on TPN/tube feeds despite my best attempts to eat. My other main chronic illness had flared up, and caused my heart to race out of control despite being on medication to control it. I wasn’t able to sit up for longer than a few minutes, and crossing a room felt like climbing a mountain.
When it seemed that my doctor wasn’t hearing my concerns and he refused to discuss an alternate plan, telling me to give this plan some more time, I was terrified. All that I could think was “Does he not see that I am getting sicker right in front of him? Is this man crazy for believing in “Plan A” so adamantly? What happens if this doesn’t work?”
I sobbed when he left the room, I felt deep sadness, fear and at the same time, felt anger rising up in my chest(mainly anger at my body for failing so much). I couldn’t help but scream. I remember watching my mom cry too, because she could see the pain that I was going through, physically and in that moment, emotionally. She and I were worn from battle. A battle our family didn’t choose but one that we fought every day for the past few years.
A few days later, I was released from the hospital, having made minimal improvements. Thankfully, I was able to drink enough to keep myself minimally hydrated. I was able to snack a little and I had a little less pain and nausea but I was still so weak and sick.
I spent the month of May in and out of doctor appointments, medical testing and physical therapy but mainly spent the time resting at home. By the end of the month, I had consistently worked up to eating the bare minimum of what my body needed in a day. The medicine that I had started in the hospital was helping to block my pain/nausea signals and made eating more bearable.
It took the months of May and June to gain back what little strength I originally had before that hospital stay. In the beginning of June, we took a trip to Florida, but I didn’t feel like myself and I mainly spent the trip sleeping or resting in bed. I made it to the beach, and loved the view but I was only able to lay under the beach umbrella, because of how I physically felt. We needed to take a trip to the emergency room in the middle of the night at one point for extreme abdominal pain.
When we got home from our vacation, the second new medication that was part of my new treatment plan had arrived. When both of these medicines had been in my system as a team for about a week, I noticed a more significant difference. Eating enough to fuel my body finally stopped feeling like a battle.
When my gastric emptying scan (a test used to assess stomach function) was repeated, it indicated a slight improvement from previous testing. The numbers were still poor enough to diagnose me with gastroparesis, even while on medication, but there was a change in the positive direction. Any improvement felt like relief to my body, and between the medicine that gets my paralyzed stomach to move a little and the medicine that blocks out the pain and nausea signals coming from my stomach, I was in a much better place.
My GI doctor and I chose to treat symptoms rather than numbers, so as long as my symptoms are under control we will be sticking with our current plan.
When I was still in a waiting season and before I had a treatment plan that worked for my stomach, I took a step of faith and ate a meal in my kitchen. It was against all logic, but I felt like God was asking me to be obedient in that. I had spent a good amount of time in worship, praising His name, and praying for restoration in my body. I opened up my Bible, hoping to be lead to a meaningful verse because this was no ordinary evening. I landed in Ecclesiastes, Chapter 3, and my eyes fell on these verses:
“I know that nothing is better for them than to rejoice, and to do good in their lives, and also that every man should eat and drink and enjoy the good of all his labor—it is the gift of God. I know that whatever God does, It shall be forever. Nothing can be added to it, and nothing taken from it. God does it, that men should fear before Him.” (Ecclesiastes 3:12-14)
God knew that the thing burdening my heart the most was not my inability to eat, but my inability to work efficiently because of illness. I felt as though I was losing my purpose. This verse stood out to me as a promise that I will be able to eat, drink, and find satisfaction in my work. That very night, I felt no pain or other symptoms after eating. I truly believed that I had been healed, right then and there. I even called my parents and my friend Hallie(who is my small group leader) to rejoice and told them about what had happened.
You can imagine my surprise when, the next morning, after I attempted to eat breakfast, all of my symptoms came rushing back with a vengeance. I still don’t understand to this day, why the improvement that I felt that night was so fleeting, or why the Lord didn’t want to be the sole reason for my improvement. Perhaps it was meant to provide strength for my soul to keep pressing on. I know that it gave me hope to hold onto. The enemy kept trying to tell me “God didn’t really say that/promise that/mean that”, and He kept trying to make me doubt that I even felt better for those few hours. It was confusing for my heart to go through, but I chose to take that experience as a promise from God that I would see significant improvement or healing in my future. Less than a month later, our new treatment plan and the path to significant improvement began. He who promised is faithful.
At the end of June, I celebrated my 22nd birthday with family and with friends. I reflected on the past year of my life, on both the struggles and the joyful moments. I enjoyed wonderful food and felt incredibly grateful to be able to eat it. I made some great memories too! God gave me two days in which I felt better than I have in a while. I was able to go out for a special lunch, have a great home-cooked dinner and game night with family and two of my close friends, and go to the movies with my brother. The next day, I attended my birthday party with friends. I felt so loved, especially because of the quality time that I had and the words of encouragement that were poured over me.
God’s presence and provision has really been evident in my life over the past year. There are so many prayers that He has answered in tangible ways, from my insurance approving several referrals that I needed in a timely fashion, to providing a new doctor, and providing my SmartDrive through the loving community that surrounds me. Many intangible prayers were answered as well. He has provided me with peace that only He can give during some of the scariest days of my life. He has been with me when I felt alone, and I have felt His presence. He has seen every one of my tears and has brought comfort to my heart. He has given me joy when the world says that there’s no reason why I should still be smiling.
So, where am I now? (health-wise)
My stomach is currently in a very manageable place, so I only occasionally experience mild/moderate levels of pain and nausea. Most days, my stomach feels fine. I have gained back the weight that I had lost, and I feel a little stronger.
As for the rest of my health, it remains the same for now.
My other illnesses are still very much affecting my every day life and my level of functionality. I struggle with light-headedness, dizziness, weakness, fatigue, cognitive issues, temperature regulation issues, palpitations, low blood pressure, high heart rate, headaches, migraines, various types of pain, joint instability, etc. on a daily basis.
I still struggle to sit upright for extended periods of time, and I still can’t stand or walk very far so I require the use of my wheelchair. I still have my PICC line, and receive IV fluids twice a week to compensate for my low blood volume. Although they are less frequent, I still have fainting episodes. Any activity(such as attending class, doing laundry, cooking etc.) makes me feel more symptomatic. But God is still on the throne and I’m not alone as I walk through this.
My cardiologist and I have tried our best at managing my case over the past 3 years(+). We have tried countless medications, lifestyle adaptations and treatment options. Nothing that we have tried has yielded significant results. He is a kind and brilliant man, but my body is a bit of a puzzle.
I am waiting to see one of the best doctors in the nation for my condition after making it to the top of his wait list, and praying/believing for insurance to make a decision in my favor. I am also on the wait list for a local specialist, and have insurance approval but won’t likely see that doctor until March.
But life doesn’t wait, and it’s worth participating in now.
For that reason, I chose to remain in school and press on towards my degree. I am living near UTSA campus with three girls who are in my small group through Chi Alpha, and am enjoying living in fellowship. The Lord spoke to my heart, promising His strength to rely on and not my own. Realistically, I shouldn’t be able to do this, but with Him I know that I can.
My dad and I recently had a discussion and we likened my step of faith in going back to school, to Moses’ faith when he allowed God to lead him towards the Red Sea while being chased by an army (though he knew the geography of Egypt well because of growing up in the royal household). He was being led towards what looked like a dead end in the midst of danger, but He trusted God and His plan. I want to be faithful in trusting God’s hand to lead me on the path that I should be walking, so I followed Him when he answered my prayer in giving me direction towards the decision that I should make. I have my illnesses chasing behind me, and what looks like a dead end before me, as each semester previously has been such an uphill battle that leaves me worn. But He calls us to trust Him.
I want to continue to be equipped to be the best teacher that I can be one day, to serve my students in love. Whether I’m able to have my own classroom, or whether I work as a tutor.
Our lives are always safe in the hands of God. His hands are the most capable hands. He is always faithful and never failing. What appears to be the best door (according to our plan) closing, may actually be an even better door (according to His plan) opening.
I thought that I was losing the best thing for my well-being when I lost my trusted doctor, but God knew what was on the other side. He heard and honored my prayers for His will to be done, as well as the prayers of my family and friends, asking for my health to improve. Only He knew that there was another doctor with a deeper knowledge of how to treat me and how to approach my case. What felt like a slap in the face, an insult to injury, an unjustified change in an already turbulent time, was the door to my better future opening. I gained a piece of my health back, and that is priceless.
My friends, try to remember my story the next time that you see a door slamming shut in your life. Your story is not over. You have a Heavenly Father that loves you, and if He needs to close a good door in order to open a door that is better for your well-being, or that better fulfills His plan for your life, then so be it. He is worthy of our trust because He seeks the highest good for those whom He loves.
“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 8:28
It’s a little hard to wrap my mind around the fact that I was skiing in the mountains 5 years ago today. I remember that trip to Colorado, and loved that experience! The sudden changes in my health that began in October of 2013 took me from being athletic and physically strong, to inactive and physically weak. I went from a running and dancing to having a hard time sitting up for a while or standing, and needing a wheelchair.
The past month has been very difficult with my health. Every day has been an exhausting battle, and the moments of slight relief have been brief.
