A week ago yesterday I came home from the hospital. I was in two different hospitals for a total of 12 days. It felt like I lost a whole month of my life. After a horrible stomach bug this winter, my ulcerative colitis flared up, uncontrollably. All my usual methods of caring for my body didn't seem to be working. No matter how much I rested, I was exhausted. No matter what I ate, it went right through me. I was losing a lot of blood, incapable of absorbing any nutrients, and to top it off, I was throwing up. On top of the excruciating abdominal pain and cramping, the nausea was so intense it was taking my breath away. The week leading up to my hospitalization I was taking three or four showers a day because it was the only place I felt relief. I would put Pandora on my iPhone, turn the shower on hot, and lay down on the floor so the stream would massage my left side. Thinking about those days now, I realize just how sick and pathetic I was. Finally, on a Wednesday night, I asked Ben to take me to the hospital because the pain was so intense and I felt light-headed, feverish, and really disoriented. I had reached the end of myself.
Spiritually, I was confused. I had been crying out to God for weeks to heal me, to rescue me from the sickness, to show me he was with me. All I got in return was silence. I was spending hours of every day in the shower and in bed, resting, listening to praise music, praying. I felt like the Psalmist, "How long, O Lord, will you forsake me? Have you abandoned me? You are silent. YET I was still hope. I will recall your deeds. You alone are faithful." Again and again and again I called out and was met with absolute silence. It was one of the most difficult, trying, and confusing times of my life. I kept saying, "GOD, WHERE ARE YOU?"
At San Ramon Medical Center, they put me on anti-nausea meds (Zofran), predisone (steroids), & pain meds (Dilatid). After taking some x-rays and stabilizing my symptoms, they discharged me. I felt fine. The next morning, everything came back. My doctor told Ben to take me back to the hospital, where they started the meds back up and admitted me. I had a CT scan that Thursday, for which I had to drink 32 ounces of the NASTIEST fluid. Really? I have uncontrollable nausea plus nonstop diarrhea and you're making me drink this? Ugh.
After a few days of IV fluids, anti-nausea meds, anti-fungal, & pain meds, I was feeling better. The nausea and pain were gone. My body seemed to be stabilizing. They started me on a liquid diet and introduced Ensure apple-flavored beverages to start putting some nutrients back in my system (I lost eight pounds in the two weeks prior to going into the hospital). My doctor saw me and I asked him when I was going to get back home. The plan was to switch to oral meds the following day (Sunday) and as long as I could stomach both oral meds and some sort of nutritious diet, they would monitor me and then send me home.
As I started to feel better, I had two distinct experiences in which I heard from God. One was a vision of sorts where he let me know that he was carrying me. I wasn't alone, but he was carrying me in his arms like a Daddy holding a helpless baby. Another morning as I read my Bible, I felt God say, "Abide. Stay with me. I'm here. Abide." Hearing from him brought me incredible peace and comfort.
The doctors aren't sure what happened, but Sunday things went downhill. The nausea came back. It was so bad that I was throwing up constantly. I would want so badly just to vomit so I could have a minute of relief but just as soon as I did, the nausea would return. The meds were on a four-hour rotation and Zofran basically stopped controlling the nausea so they added another anti-nausea med. The nurses refused to give it to me unless I asked (and was due), but I couldn't keep track I was so sick. All I knew is that every second of every minute I felt like I was going to throw up. The pink bucket was my constant companion. And it was all tied to eating. When I would eat, I would have to go to the bathroom. Going to the bathroom would trigger cramping, which would trigger the nausea.
I wasn't experiencing any pain but started asking for the pain meds because they knocked me out and I could get a little relief. I remember Ben having a heated conversation with two nurses in which he was describing how nonsensical it was that I had to ASK for anti-nausea meds every two hours when I could barely keep my eyes open from the pain and agony. He made them print out a list of my meds so he could know at what exact moment I could request the next dose. Sometimes I couldn't even get a hold of my nurse call button I was so out of it. And when I did, all I could do was grunt, "Nausea." There were times I was alone and asked for meds and would wait 30-40 minutes before someone would come.
Add to that a nurse who couldn't get my vein to cooperate with the IV. My whole left arm still hurts! One place in my arm is still a little swollen and there are multiple veins that are swollen, bruised, and tender.
They decided to put in a nasal-gastric tube in an effort to control the vomiting. This involved me sitting up on the side of my bed, hunched over, grasping my pink bucket while two nurses shoved a tube through my left nostril, down my throat (hello, gag reflex times 1000), and into my stomach. It was excruciatingly painful and uncomfortable. Once it was down, they realized it was not in my stomach, but my lung, and had to pull it out. Then they looked at me and said, "We're going to have to do this again, so it goes into your stomach." I can't imagine the look that I gave Ben in that moment. I wanted to die. It was horrible. But I did it. Once it was in, the tube hanging down the back of my throat made me gag every time I changed position. It took three or four hours for my throat to relax and accept the intruder, then I eventually passed out from exhaustion. They eventually pumped like 64 ounces of bile out of my stomach over the course of a few days. It was so gross.
Every time I woke up I would start gagging from the tube hanging down the back of my throat. I couldn't throw up anymore because of the intubation, but I would still gag and spit constantly. I begged them to take it out. Here I am, passed out, tube pumping away.
At some point Ben decided I should be transferred. My doctor and the staff at SRMC were making so many mistakes and I was getting worse, not better. They put in a transfer request and then we just had to wait until a bed opened up at UCSF. I had seen a specialist through UCSF when I was pregnant with Maddie and experiencing a mild flare. She is one of the leading researchers and practitioners in the country for folks with Ulcerative Colitis. Thankfully they accepted me and I was transferred on a Tuesday night. From Sunday to Tuesday I was in and out of extreme discomfort and sedated sleep. I don't remember much of anything from those days. I was on three different anti-nausea meds plus a whole host of other things. Maybe ten or twelve medications total.
Ben took pictures of my ambulance ride for Sam. :) Here they are loading me in:
And this is the inside of the ambulance (more on this later):
I awoke in the middle of the night after being transferred. I was scared, disoriented, and confused. Then I saw enormous, multiple-stories tall angels around my bed. The one at my left foot was swinging an immense gold sword. I knew in that moment that Jesus had surrounded me with angels, and the feeling I had was that something else, someone else, was fighting my battles so that I could go back to sleep.
There was a tall, gentle, soft-spoken night nurse named Willetta. She had an island accent, Jamaican maybe, and it was comforting and lovely to listen to her. She was the first person to give me the anti-nausea meds before I even asked. Shortly after arriving at UCSF, the nausea was under control.
A cute, young, blonde nurse removed the tube the next day and I wanted to kiss her! It felt SO GOOD to have that tube out of my throat! She told me what a wonderful job my husband had done caring for me, sleeping by my side through the night, and advocating for all my needs. She was really impressed with how much he cared. I had no idea that Ben spent four of the twelve nights with me. That's how incoherent and out of it I was.
Eventually I got off the pain medication and was taking anti-nausea meds, prednisone, antacids and anti-fungals. Slowly they weaned me off everything but the prednisone and I started taking my meds orally. At UCSF they drew blood every morning and sent it to the nutrition lab, where doctors custom-blended an infusion called NTP that is made up of vitamins, nutrients and minerals based on the what your body needs. Every day was a new tailor-made cocktail. Crazy. All of the staff, doctors and nurses, were amazingly professional. It was so different from the other hospital. It's like they were anticipating my needs and I was able to truly rest and recuperate.
The specialist arranged for me to have a colonoscopy and upper endoscopy on Thursday. She found nothing wrong with my stomach, so the nausea and vomiting is still unexplained. My colon was a mess. In the past, my colitis has always been labeled "moderate" or "quiescent," meaning it's been okay or in remission with every other colonoscopy. She said it was stage 4, which I'd never heard before, and that it was "severe." The pictures showed crazy, deep, painful ulcerations. When I woke up from the sedation, I was in a lot of pain. Every other colonoscopy I've ever had I woke up fine. Eventually the pain passed and I was transferred back to my hospital room.
The doctor told us I need a more potent medication. She recommended I start Remicade immediately, pending the results of TB and Hepatitis tests. Remicade is essentially immunosuppressant therapy that works by suppressing your whole immune system to stop attacking itself (auto-immune disorders like colitis are brought on, inexplicably, by your own body's natural defense system). There's just a few catches: 1) Once you start Remicade, you're on it for life. If you stop and then try to go back on, your immune system will create antibodies and the medication will be ineffective. 2) It's really expensive. Like $3,000 a dose, to be taken every 8 weeks. 3) It's the end of the road, the last option before surgery. As in having your colon removed permanently.
We asked for a few days to think things over. The results of the tests were going to take at least two days and they wanted me to start on solid foods to see how my body responded. I started on a low-residue diet and upgraded to chewable food for the first time since before I went into the hospital. I was SO SICK of chicken broth. Over the next few days I had eggs, chicken, cooked carrots, pureed squash, applesauce, plain white rice, plain white bread, and lots of juice. My mom and dad came to visit and my dear daddy went out and bought me tillamook cheddar cheese and ritz crackers. The round ritz crackers tasted like they had been lying in a bed of salt. Literally, my taste buds were so excited to taste something with a little seasoning.
And I started feeling better! The prednisone totally improved my colitis symptoms, though it started making me feel crazy, the more aware I became. I would sweat through my sheets and blankets at night, completely drenched. I had insomnia. I couldn't fall asleep until almost midnight and then I would awaken multiple times in the night. By the time I finally fell asleep, the nurses would come in to check my vitals or draw blood (5:45am every day). The hospital bed was constantly inflating and deflating to keep your body moving. So annoying. The picc line in my arm was constantly setting off the alarm on the pump because it would get pinched or trapped. I started resetting my own pump regularly.
I knew I was feeling better when I started cleaning up my hospital cart. Then I started organizing my room. My mom helped me take a shower my first day at UCSF but then I went on my own after that. One day I started walking the halls. Then I asked if I could go outside. They looked at me like I was crazy. So I would open the tiny 12x12 (inches) window in my room and let the air flow in. Unfortunately my room was right above the dumpsters so it sort of smelled like trash and toilets combined, but whatever. It was fresher than the hospital air. Ugh. When I would walk the halls the smells were so overwhelming. A lady down the hall was screaming around the clock.
My kids came to visit me Friday, March 30th, for the first time since I was transferred. It had been over a week since I had last seen them. I've never been so happy! My brother, Dad and Mom had come for Spring Break, at which point I had already been in the hospital for four days. I didn't even see them for days, either! But thank God they were here to help care for my family while I was away. They all visited on Friday before my brother and Dad drove back to Oregon. I walked my family and kids to the elevator when it was time to go, and then I walked, sobbing, all the way back to my lonely room. I was SO homesick and heartsick for my little family.
Here they are watching a show on the iPad in my hospital bed:
I took this picture of myself that same day. I was feeling pretty good! I had wrapped myself up in a cardigan (over my lovely hospital gown), put on my ugg boots, and went for a walk. My CNA joked he should take a picture and post it to facebook, I was looking so fashionable. :)
Saturday the 31st my mom, Ben & the kiddos came to visit. We enjoyed a long, loud, funny visit in the hospital lobby. It was like a ghost town at UCSF on the weekend. I "chased" the kids while pushing my IV/TPN pump caddy around. Sam brought his new firetruck and Maddie had Fancy Nancy, dressed for a party. It was a great day.
That afternoon, Ben went to a thai restaurant and ordered chicken and veggies steamed in broth. With white rice. It tasted like heaven. Seriously, I've never been so excited to see broccoli in my life. I ate the entire dish (other than the cabbage, just in case). My stomach was SO full and SO happy.
On Saturday night, they stopped my TPN (nutrition pump). My night nurse, Torshia, was a talkative, funny, sweet, absent-minded believer originally from Florida. I had her two nights in a row and the girl LOVED to chat. I was so thankful for her company, even if I was a little worried she was going to forget one of my medications. She would talk to me for a long time at the end of the day. I was so lonely.
Saturday night about 2am, I was awakened by the sound of my neighbor sobbing. Deep, loud, heart-wrenching sobs from the depths of her soul. I recognized it, because I had cried like that a few times in the past twelve days. The kind of cry that comes from somewhere deep, deep inside: WHY? I immediately started praying for her. I knew that the nurses could come with pain meds or sedatives, or even just to listen and be present, but that kind of cry demanded a Savior. So I prayed that Jesus would show up and make himself real to her, comfort her, accompany her, meet her. And then, suddenly, God gave me the most incredible vision. It is hard to explain, but it was like watching a movie of my past two weeks in the hospital. There were multiple scenes, some from my memory, others scenes in which I was asleep or unconscious.
The following excerpt is from my journal, which I wrote in as soon as I woke in the morning:
In the night, my neighbor was crying. My heart was beating for her because I had been in that place of desperation just a week ago--tired, in pain, crying out, needing relief. I had a very real Psalm experience with this illness--my soul waited and longed in silence, for Christ. There was nothing and no one who could answer the deepest cry of my heart except my Savior. And he was oddly quiet. It took all the faith I had--the knowledge of his faithfulness, goodness and grace in the past--to keep me grounded to the truth: All of my deepest needs and longings had already been fulfilled in Christ's death and resurrection.
I knew from the story that Jesus suffered, and so He knew the pain and suffering I was enduring. Jesus experienced a distancing from the Father when he was on the cross, carrying our sin, so he knew what it was like to wait in silence. I trusted that like my earthly father, He was near and tender-hearted, loving and concerned. Yet as my Heavenly Father he also held the assurance of my future and so he was not worried.
As I laid listening to praise music in my hospital room, lauding the fact Christ would 'never let go' of me, his beloved, many moments of desperation from the past week came to mind, and Christ revealed to me exactly where He was in those moments.
As I sat upright on the edge of the bed, grasping my pink barf bowl and getting the tube inserted, Jesus held my head tenderly yet strongly with his two hands, his lips pressed against the back of my head, comforting.
In the ambulance, He sat alongside me, his hand on my left shoulder, accompanying.
In the night, when I woke up alone, scared and disoriented, He stationed HUGE warrior angels at the posts of my bed. They fought the battles of fear so I could go back to sleep. Defending.
Jesus walked in the quiet, peaceful and strong steps of my night nurse Willetta, capable and reassuring.
As friends, family, acquaintances, and complete strangers cried out and interceded on my behalf, Christ himself appeared in the throne room of heaven before God the Father, interceding with words and groans for his beloved girl. Interceding.
As friends arranged and delivered meals to my family, God himself infused my veins with life-giving sustenance. Sustaining.
When Ben advocated for my earthly care, my Advocate--Jesus--was seeking the care of my soul. Advocating.
In the most difficult times, when I couldn't feel his presence, he carried me.
In his sovereignty, he was in control at every point in the journey.
In his tenderness, he never left my side.
Never once was I alone. Emmanuel: God With Us. There is no greater gift than one who would stay by my side.
I am so loved. I AM SO LOVED! The creator and sustainer of the universe chose to stay by my side every second of every day I suffered and waited. I need never doubt how greatly I am loved or anything more I need than the loving presence of a holy, awesome, tender, caring, healing Savior.
And then I was filled with the most incredible sense of joy tempered by great humility. Then I saw things pan out from my hospital room and I saw Jesus sitting with an orphan in Haiti. I saw Jesus next to a sex slave in Indonesia. I saw Jesus walking with a child soldier, slinging a gun, through a field. I saw Jesus in the room of my neighbor at the hospital. Wherever there was someone suffering, Jesus was present. He didn't just cross the cosmos once. When he came as a human he took our sins on himself, died, and rose again, conquering death in our place. But he showed me how in just those twelve days in the hospital he crossed the cosmos again and again and again in order to enter into my suffering. He isn't just concerned about our future, eternal security. He's intimately involved in the day-to-day life of his children because he loves us. He came once to take care of our deepest eternal need. He comes each day to take care of our present circumstances. Love is HERE. Love is NOW.
The song that was playing when my vision ended? "Oh, How He Loves Us." The following phrase will be forever burned in my soul:
And all of the sudden I am unaware
of these afflictions eclipsed by glory
And I realize just how beautiful you are
and how great your affections are for me
Sunday morning the doctor came and removed my picc line from my arm. I had to hum loudly while she pulled it out. I didn't know this, but the tube extends way up through your arm, up into your chest cavity, right next to your heart. There are two ports, one where they draw blood and one where they administer all the meds and nutrition. It was a really weird feeling when it came out.
They signed my discharge papers, gave me a whole list of prescriptions to fill, and sent me home about noon. I rolled down the window to the car and put my face near the fresh air. AHHHHH!!!!
I've been home a week. I'm tapering slowly off the steroids, which make me amped up, hot, foggy-brained and cause insomnia. I'm taking three other medications, a multivitamin, two probiotics and four supplements. I had to write out a list so I could keep track of everything I'm supposed to take throughout the day. My colitis symptoms are completely improved. I went from visiting the bathroom 8-10 times a day to going once a day. No more nausea, cramping, or pain. Honestly, my body is just so beat up, so tired, and it's going to take a long time to get my strength back.
I'm seeing a naturopath on the peninsula who is AWESOME and has an incredible plan for helping my colon heal and addressing some of the root problems. My GI specialist wants to see me on Remicade but we're going to try some other things--probiotics, supplements, vitamins, diet, rest--first to see if we can get a better handle on the disease. The meds will always work, and they'll always be there.
Yesterday, on Easter, I shared my story in front of the chapel. It was the perfect illustration for Ben's Easter message. I spoke for ten minutes about how Jesus met me in the hospital, how he showed me just how good he is. It was so wonderful to see how already he is redeeming the absolute WORST month of my life by allowing me to share his goodness with a room full of people. Many of whom needed the reminder that Jesus enters into our suffering.
For days I couldn't think about Jesus in my hospital room without sobbing. Every single time I thought about my Savior tears would pour out of my eyes. It's like I've experienced an entirely new side of Jesus. His love is the most tangible, authentic, amazing, sufficient, satisfying thing I've ever known. The assurance of his presence in each of those moments? The most incredible gift I've ever been given. Seeing that He's not just in control of the universe, but intimately involved, forever present in the sufferings of his children? Mind-blowing.
Oh, how he loves us so
Oh, how he loves us
How he loves us so!