Elevators On A Bed
In March of this year, the world went blurry. I had gotten into the habit of going to the park with Ellie every day. Not necessarily the same park every day, but we got out, we played, we enjoyed the sun (or the clouds), Ellie got her wiggles out, and we both interacted with others while out there. I remember our last time at the park. The rumors were already spreading that quarantine was coming, and I was more sad than panicked. Going to the park was everything to us. And now it was going away.
We counted ourselves among the lucky ones; Preston's job wouldn't be terminated, but would go "virtual." I didn't have a job anyway, so there was no loss of income on my part either. Preston teaching from home meant we would see much much more of him, which all three of us were excited about. We knew there would be a learning curve as far as how this new way of life would work. Hoarders took to grocery stores and most especially toilet paper like there would be no other way to clean our backsides without those rolls of convenience. All of a sudden, hand sanitizer was more precious than gold, and face masks and gloves were mere holes on shelves where once they were plentiful. It all just felt nuts.
Luckily for us, after a few weeks of virtual teaching, learning how to buy necessities, and trying to get Ellie outside still as much as possible without going to the park, there was a light at the end of our tunnel: Spring Break was coming. And we were going to take advantage of it. We made plans in early March to go visit Preston's mom, Julie, and stepdad, Channing, in central CA. They live up in the foothills, away from crowds, and had space for Ellie to go crazy. Tons of toys, a kitten who had the patience of Job for a toddler who adored her, and of course, Grandma. Ellie and Grandma are peas in a pod. Needless to say, we were absolutely looking forward to this trip.
Around the middle of March, I started to have these weird "episodes," as I would call them. My head would fill with pressure from the inside, and it would make my hearing and my vision fade in and out with my heartbeat. I could hear the rushing in my ears from the pressure, and it would make it hard to do anything for about 30 seconds. It didn't hurt, but it was disconcerting, and I didn't like it. I paid attention to when it would happen, how long it would last, and how often in was happening. I couldn't find anything that triggered it, but it was lasting longer and longer, and it was happening more and more often. It had me worried, and didn't feel right. I went to the ER. This was before they had turned themselves into two ERs, one for COVID patients, and one for 'everything else' patients. They took me back, but I could tell they were impatient with me being there. I wasn't in pain, all of my vitals checked out, and I looked fine? What a waste of time. So, I was told there was nothing they could do, given some pain meds for a headache, and sent home. I was so embarrassed. It is not cheap to go the ER, and here I had just wasted whatever it was going to cost to be told I was having headaches (that apparently didn't hurt), and given a prescription for pain medication. Humiliating.
I went home, determined not to take the drugs since I wasn't in any pain, I was just being annoyed by this weird pressure. As the days went on, the episodes increased in frequency, duration, and intensity. And then they started to hurt. I had made an appointment with a family doctor, in the hopes that he might have a little more time for me than the busy ER doctors, and while I waited for that appointment to come, I got worse. The pain became so unbearable at times, all I could do was lay there. Poor Ellie got so bored with me. I don't blame her. I'm not a weakling, either. I have a very high pain tolerance, so for me to be knocked out like that was pretty unheard of. I will always push through the pain. This, however, was too much. It was unlike anything I had ever felt. It got so bad that I started to throw up. One night, I was in so much pain that I was laying in bed and went to get up, but the whole right side of my body had gone numb. I couldn't use my right leg or right arm, and even the right side of my face had gone limp. I was so terrified I started to cry. Preston helped me climb back into bed, and I lay there in agony, praying the waves of pain would subside enough that I could just go to sleep. They didn't. Preston brought me to the hospital late that night. At least I was in pain this time, so I had something to show for it. And a doctor with a little more empathy than the first.
It wasn't busy that night, so they got me in quickly, and I was wheeled back to the CT before long. They took a CT of my brain, and I was sent back out to gen pop where a lady two beds down (I couldn't see her because of the curtains) was convinced she was dying, and nurses kept going over to tell her she wasn't dying. I lay there for a couple hours while they put pain meds in my IV, and wondered when they were going to kick in. Honestly, nothing they gave me that night even touched the pain. They even gave me morphine. What kind of pain is stronger than morphine? They sent me home with some steroids and an antibiotic, and a diagnosis of "atypical headaches," and a command to "take it easy." Sure. I didn't go to my appointment with my regular doctor. I thought I had it in hand. For a couple days, it did seem to get easier. The headaches were less frequent. I was really tired, but optimistic.
We still left for central California during Spring Break, only for about 4 days, instead of the week we had planned because my issues had delayed our going. The 5 hour trip there was easy because there were so few people on the road (we've never made it through LA so quickly, without even slowing down!), and Ellie and I slept a lot of the time. I was taking my meds, but not eating as much as I should have. By the time we got into town, I was feeling really nauseated. About a half hour from Julie's, I even made Preston pull over because I was sure I was about to throw up. It didn't happen, and we made the rest of the drive without incident (maybe a little faster than usual). As soon as I opened my door, I threw up. At least we'd made it. I was a little bummed though, because normally, when I threw up, there was relief for a half hour or so from the headaches. It didn't happen. I went straight to bed, and prayed for sleep. Preston brought me some food so I could take my pills, but I could only eat a few bites. I had no appetite. He came to bed after awhile, and we went to sleep. I woke up about midnight and jumped out of bed. I started to run to the bathroom, tripped and fell, and started throwing up where I was. I got up and ran to the toilet, and left a trail. (I know this is TMI, but I want everything recorded.) Poor Preston cleaned up after me while I got in the shower. There was finally some relief at this point. I got out of the shower and we went back to bed.
The next day was less eventful. I spent a lot of time resting, and Preston kept trying to make me eat, bless him. I still had no appetite, and the headache would come and go, but for the most part, I could hang out with people and watch Ellie play with the kitten (the best), and watch recorded episodes of "The Price Is Right," one of our favorite pastimes at Julie's house. Finally, the night came, and I threw up again, but I had made it to the toilet this time. I was just so exhausted by this point. I started to cry a little, out of self-pity. What was going on? Why wasn't I getting better with these medicines? So much confusion and frustration. We went to bed that night, and I don't know that I ever went to sleep. I was in too much pain. Preston woke up with a fever around 2, so he went to go take some ibuprofen and a bath. Apparently, the bath cured him, because he was fine after that, and woke up feeling totally normal the next day. I got out of bed just feeling absolutely tired, and went down to lay on the couch. The headache really got intense at this point, and I had taken my drugs, plus migraine medicine, and I was still writhing. Preston gave me a gel patch to put on my forehead, which felt good, but didn't do much as far as the pain was concerned. Julie and Channing had an appointment that morning, and I remember them leaving. And that is the last I remember of Friday, April 3.
Preston left me on the couch since I had apparently passed out, and he ran some errands with Ellie. I was still asleep when he got home, so he let me sleep, and he put Ellie down for a nap. When he came back downstairs and I was still sleeping, he tried to roust me, but I was super groggy. He tried to ask me if I'd eaten, and I didn't respond, so he tried to feed me some food, and it didn't really work, so he let me sleep. When Julie and Channing had come back, and it had been a couple more hours since Preston had tried to wake me, he was getting worried. I was not coherent. He asked me if I had taken my drugs, and I responded with what seemed like an affirmative, "Hmmm." He got really worried at that point, because what if I had OD'd? At this point, he tried to get me sit up, which caused me to scream in pain (this is all second-hand, by the way. Remember I have no recollection of this day), and that was when he decided it was time to take me to the hospital. Things got really fun. I apparently told him I just needed to vape, and that my name was Baby. So incoherent. They put me in a computer chair that had wheels on it, and tried to cover me in a blanket to get me out to the car. It was too painful for me to walk. And even then, at some point, Preston had to carry me. I was in the car, throwing up, and somehow, he made it to the nearest hospital around 3:30-4 in the afternoon. Normally, only the patient can go into the hospital, but because I couldn't tell them anything about me (anything true, anyway), Preston got to go in to tell them my information.
He had to leave me there. That must have been so awful for him. Meanwhile, I was tied down to a gurney, and the next thing I remember was that I was dreaming I was in a hospital, and that I just kept wanting to wake up. I would go back to sleep, thinking if I could just wake myself up, I would be back at Julie's. I would wake up in the gurney, tied down, so so confused and angry, and do anything to wake myself up. I had to pee so bad, I eventually had the thought that I could just pee on myself and that would probably wake me up. But it didn't. I was still in this hospital dream. Eventually, I found myself talking to a nurse, grateful that at least she was kind in my dream. Not a mean nurse. She was asking me my name and the year, and I thought I'd just oblige her, so I went along with it and told her my name and the year. She said, "Oh good, you're waking up! It's been awhile." She then told me they were going to get an IV going, and I thought to myself, "If I feel the needle go in, then I'll believe I'm in a hospital." I felt the pinch of the needle, and reconciled myself to the fact that I must have actually spent all that time in the hospital. I asked for Preston, and while she undid the ties on my wrists that held me down, was told there were no visitors allowed because of the virus, and then I got really sad. I told her I didn't want to be there, and with all the empathy a sweet nurse can have, she said, "I know, sweetie, I'm so sorry. This is so hard." She was my favorite of all the nurses I had, so I'm grateful I woke up to her. Since I had become coherent, they were prepping me to be moved to a permanent room, and this baffled me. I was going to be in the hospital for more than a few hours. I'm young! This doesn't happen to young people without the coronavirus!
I asked some questions about how and when I had gotten there, and was left with even more questions. I had been acting crazy? They'd had to tie me down for my own safety, as well as theirs? I had screamed and raged at everyone? I was beyond confused and desperate to talk to Preston. They gave me a phone to call him, but no one knew how to make outside calls on it. So finally, he called the hospital and was transferred to my phone, and I was so relieved to hear his voice. At last, some familiarity! He had been as scared as I was, and I told him they were moving me to a private room, and I wished I could see him. He told me he was sorry I didn't have my phone or anything, and that he would bring it by soon. We hung up when they decided it was time to send me to a private room, and I got to watch the hospital ceiling and walls roll by as I took the elevator on a bed to the fifth floor. They rolled me to my room, where I would be for the next 9 days. Except for when they took me places for different procedures. Like the MRI they gave me that first evening.
On the morning of the second day I was awake, they told me I'd be taken down to radiology for a lumbar puncture or spinal tap. They wanted to test my cerebro spinal fluid. It hurt. I was told it was the actual numbing that hurt, not the needle itself, but that was a big fat lie. I felt the needle, and I felt when he pushed it into my spinal cord. I felt it "pop" in and then the numbing would kick in. I'm a trooper though, so I would really just take a sharp intake of breath through clenched teeth, and that's the only indicator the doctor would hear to know that I was uncomfortable. He would apologize, and they would let the liquid drip out of me. I was told the number of the pressure in the fluid was very high, an indicator that I was right when I described the pressure building in my head. I got wheeled back to my room, and left to order and eat hospital meals, and watch TV with commercials. I don't know how people watch TV that way. Preston dropped my phone off with some other things, and I had connection to the outside world. The phone in my room was impossible, I swear. I talked to family multiple times a day, if only for entertainment, as I was not even allowed out of bed for the first several days. But I talked to everyone for support as well, and I felt it. I had many many people praying and fasting for me, and I'm still so grateful. I definitely felt like I didn't need to fall apart because I felt so comforted. And I really didn't. I cried once that whole time I was in the hospital, and it was only when I was talking to my mom. I literally said, "I want my mom." Cue the tears.
Preston had to return home to continue teaching (Spring Break had ended while I was in the hospital), and Ellie went with him. We are so insanely blessed that my sister, Chelsea, only lives 45 minutes away, and that Ellie loves going to her house and playing with her three cousins, and most of all, that Chelsea VOLUNTEERED to take Ellie while I was in the hospital so that Preston would be able to work. He would not have been able to do it otherwise. Meanwhile, I was in the hospital, so very very alone. I missed my baby like crazy, and thankfully, Chelsea would FaceTime me with Ellie every day so I could see her, and Preston called multiple times a day. Julie brought me the sweetest gift basket and flowers, and Preston's aunt sent me flowers as well. I had so much love sent my way all the time. As lonely as I felt, I was grateful to so many for reaching out.
While all this was going on, I was having procedures often. More lumbar punctures, another MRI, a CAT scan, and I'm sure there were others. I was a medical mystery. I was still having headaches, and the only thing they found that would deal with my pain (even though the relief only lasted like a half hour), was dilaudid. A medication 7 times stronger than morphine. It was a heavy narcotic, which they would only give me probably once a day, so I made sure I was in the worst of pain before I asked for it. The relief was instant, but like I said, short-lived. Otherwise, they kept trying Tylenol (nothing), and other IV medications. I constantly had an IV. They were giving me fluids all the time, along with antibiotics, which they hoped were helping with whatever infection I had. I was poked multiple times a day, for different tests, along with having to have my IV moved all the time because I have really tender veins. The site would turn sour and painful and when this was all over, I looked like a drug addict with all my bruises all over both arms and hands. They eventually landed on meningitis as a partial diagnosis, but they had no idea what had caused it or was causing the infection. They kept trying different drugs, different tests, and still found nothing. Meanwhile, I was making progress. It was slow, but it was happening, and I was getting more and more impatient to go home.
On April 10th, I had a really odd day. I could not wake up. Try as hard as I might. Even when lab people came in to take the daily blood sample, I was barely able to keep my eyes open. Apparently the neurologist had come in to see me, but I wouldn't wake up. Preston called me, and I fell asleep while he was talking. My nurses kept trying to get me to wake up to eat, but I just kept felling asleep. We still don't know why this happened, but the next day, I was back to normal. I'm sure it was some kind of reaction from the cocktail of chemicals swimming in my bloodstream. I remember it was a really frustrating day for me, because I was bound and determined to go home soon, and it seemed like this would hinder that. Also, around the third or fourth day in, I developed double vision. Imagine walking around with your eyes crossed. I can't explain how annoying it is. I also developed a black spot in my right eye. It kind of looks like a crack that moves with my eye. Sometimes at night, it makes me think there's a ghost nearby because it's black. Again, super annoying.
However, the next day, since I was doing so well, it had been so long, and I was so done being in the hospital, the doctor came and told me she was ready to let me go home the next day, as long as I didn't take a turn for the worse over night. I was so excited and called everyone to let them know. Preston left home to drive to Fresno to come get me from the hospital, and I slept pretty lightly that night, knowing I was going home.
He brought me some clothes to wear home (the ones I had come in were covered in vomit), and we joyfully left the hospital, and I remember saying, "Good riddance!" as we pulled out of the drive. I was exhausted. We spent the next couple days at Julie's so that I could recover a little before we drove home, and it was so nice. We lounged around, spent time outside in the beautiful spring weather, caught the horses when they escaped down the road, and went to our favorite lake to visit when we're up there. It was beautiful, and still had snow on the ground. I was still dizzy, and seeing double, and easily exhausted, but happy to be out of the hospital. We left for home a little wary of being in the car for so long, but I did well. Slept a lot of the time again, and the drive was quick. We were home for about a half hour before Chelsea brought Ellie back, and I almost cried when I saw her. How did she already seem bigger? She was just has happy to see us, and we were so happy to be all together again.
That was a lot of excitement, so I had to lay down. Everything was so tiring. It was annoying, but I understood why. We went to bed fairly early that night, just because we were all tired, and I was hopeful the next day would just be an easy, relaxing day. My hopes were dashed when I kept getting headaches throughout the day, and nothing was helping. I couldn't believe it. I was being diligent with my medicine, relaxing, and getting sleep. How was this still happening to me?! Preston asked if we needed to go to the ER, or if I could wait for my appointment with my family doctor that we had set up for my follow-up from the hospital. It was the next morning around 11. I told him I wanted to wait. I was so sick of the ER. So I went to bed in pain, and eventually fell asleep. I woke up in agony at 3, and tried everything I knew to get some relief. Nothing worked. I never went back to sleep, but jumped out of bed to throw up. I got in the shower and cried. I was so confused and frustrated. I thought this was done? I thought I was through with this whole thing. My strength was totally zapped, so I got back in bed. I just lay there, desperate for sleep, but unable to find it. At 6, I got up to throw up again, and just sat on the floor in the bathroom, with no strength to get up, and contemplated my situation. What were we going to do? Preston came in and helped me off the floor and asked again if we needed to go to the ER, but I was determined that the answer was no.
I got back in bed to just wait out the time before we could leave for my appointment, while he got up with Ellie. I never did fall asleep. The pain was too much, and I had too many thoughts swirling through my brain to relax. Eventually the time did arrive for us to leave, and it took all my strength just to get dressed and try to remember everything I would need.
I remember when I had gotten to the waiting area that I was just exhausted. I wanted to sleep. But they called me back before long, and I met the kindest doctor I've ever seen in my entire life. He was an excellent listener, very empathetic, and very concerned about my case. He told me he was sorry, but that based on the things I had told him, he had nothing at his disposal for my level of pain, and that the best thing he could think to do would be have me admitted to the hospital, to be seen by the neurologist there. He could tell I was bummed to go back, and I could tell he wished he didn't have to send me, but we could both see the writing on the wall. I was going back to the hospital.
In just over a month, I went to the Emergency Room for the fourth time. Luckily, because my doctor had sent over the right paperwork, I went right into a private room in the ER, which was really nice. gen pop is not my favorite place to be. They stuck an IV in my arm, and 3 different people came to take blood from me in the space of the first hour and a half. I was told they were going to take me back for a CAT scan, and that it would be a few minutes. The reason I was left in the ER for so long is that it's on the same floor as radiology, which is where the majority of my procedures took place. It was convenient. So after a couple hours, I had the CAT scan. I was in my room for about 10 minutes before the nurse came in and asked if they'd done a lumbar puncture while I was back there. When she found out they hadn't, there was frustration, because apparently, it would have taken place in the room next door, and would have saved a lot of time. Anyway, I had another LP, the most painful of all, and found out the pressure in the fluid was higher than EVER. Excuse me? I've been on medication this whole time, and it's done nothing? In fact, I'm worse?
They finally took me up to the third floor where I talked to the infectious disease doctor, who was a really cool guy, and he said they were just as confused as I was. He said I'd be staying for awhile, and thankfully, Preston had taken me home before we'd gone for me to be admitted in the hospital, because I was much more prepared than the first time I went in indefinitely. Always bring deodorant.
I felt like my time at the second hospital went a little faster. I was more mobile, which was really nice. I could go to the bathroom by myself, which was pure luxury. On the second day, I was visited by a physical therapist (he was the coolest), who told me I needed to go on 3 walks a day around the floor, for the health of my muscles and heart. That really helped time pass faster because I kept thinking about when I'd have to go on my next walk.
There was one thing that didn't help the time pass faster. Sleep. There were a couple factors working against me at this hospital. Number One: The bed. I don't know if I was spoiled at the first one, but that bed was super cozy. At the second, I was always uncomfortable. Always. Plus, I hate sleeping in the stupid hospital gown. Hate it. Number Two: the banshee. On the floor right above me, there was a female of indeterminate age who would wail, basically 24/7. We're not talking your basic, "Woe is me," wail, no. This was a wail that would tear the throat in half of the average person. It was terrifying. And she did it all the time. And she would also jump off of things and land super heavily right above me. This happened all the time, day or night. So the doctor would come in and ask how I was sleeping, and I would tell him that I had a very noisy neighbor. I had thoughts that she would somehow break out of her floor, come down to mine, sneak into my room, and hide in my bathroom without me knowing. I made one of the male nurses check one time in the middle of the night. That's how scared I was. She wasn't there.
But I aside from those things, I made it through the four days of that stay fairly quickly. I was poked and prodded just as much as before, and I was really really sick of how painful my IVs would become. My doctors still had no full diagnosis, and they said they were doing all the tests they could think of, and were going to start on the tests for the more rare, unheard-of diseases. But in the meantime, I could go home. So they sent me home with prescriptions for all kinds of things, and off I went.
A week and a half later, the doctor called and said they'd finally figured out what it was. Lymphocytic Choreomeningitis, or LCM. It's an infection spread by rodents. Their spit, their poop, their pee, whatever, if a rodent has this infection, and you come in contact with some bit of them, it's possible to get this infection as well. It's pretty rare, and it's even more rare to get it as badly as I did, but it's even more rare for anyone to die from it. It just has the ability to make you miserable. And damage your optic nerves. Anyway, it's disgusting and we have no idea where I could have come in contact with something like that, but luckily, Ellie and Preston have stayed safe.
I need to talk about Preston really quick. He has been my lifesaver. My hero. He has taken me to the ER, picked up my prescriptions, brought me things at the hospital, kept my family updated, taken care of Ellie alone, packed her up for Chelsea's, kept me fed, made sure I've taken my meds, made me sleep, made me go relax, made me calm down, kept me entertained, and all of this while STILL TEACHING HIS FOURTH GRADE CLASS. He is so empathetic and sweet and smart, and makes sure that I don't ever feel ashamed or guilty for any of this, and just loves Ellie and I so completely. We are so so blessed to have him in our lives. We love him so much.
The last thing I'll mention, even though I could talk about this forever, is that there are some things I've learned. I've learned that the Lord will continually put me in a place that will force me to rely on others. Because I hate asking for help. I hate needing help. He continues to teach me humility. I've learned that there is no better support system than my family. Thank you all. There were so many who did so much to make me feel loved, or to make my life easier, and you all succeeded. I learned some more sympathy. My feeling so blessed and loved and comforted put into sharp contrast those who lacked that same support. I really felt for those who were in the hospital completely alone. With no one to call, and no one to send them flowers or texts of encouragement. I felt angels all the time, and my heart broke for those who couldn't feel the same. I learned gratitude. For all of this and for nurses, who are completely insane. I'm a fairly easy patient. I don't ask for much. To their frustration. They were always telling me that I wasn't needy enough. These crazy people go out of their way to make others feel better, and not just because it's their job. Because they're insane and they actually like people that much. I came to love them in their insanity, and I'm so grateful for the dozens who cared for me while I was away from home.
I'm glad this journey is coming to a close. I still have double vision and the black spot in my eye, but the headaches are very few and far between these days. #blessed
We counted ourselves among the lucky ones; Preston's job wouldn't be terminated, but would go "virtual." I didn't have a job anyway, so there was no loss of income on my part either. Preston teaching from home meant we would see much much more of him, which all three of us were excited about. We knew there would be a learning curve as far as how this new way of life would work. Hoarders took to grocery stores and most especially toilet paper like there would be no other way to clean our backsides without those rolls of convenience. All of a sudden, hand sanitizer was more precious than gold, and face masks and gloves were mere holes on shelves where once they were plentiful. It all just felt nuts.
Luckily for us, after a few weeks of virtual teaching, learning how to buy necessities, and trying to get Ellie outside still as much as possible without going to the park, there was a light at the end of our tunnel: Spring Break was coming. And we were going to take advantage of it. We made plans in early March to go visit Preston's mom, Julie, and stepdad, Channing, in central CA. They live up in the foothills, away from crowds, and had space for Ellie to go crazy. Tons of toys, a kitten who had the patience of Job for a toddler who adored her, and of course, Grandma. Ellie and Grandma are peas in a pod. Needless to say, we were absolutely looking forward to this trip.
Around the middle of March, I started to have these weird "episodes," as I would call them. My head would fill with pressure from the inside, and it would make my hearing and my vision fade in and out with my heartbeat. I could hear the rushing in my ears from the pressure, and it would make it hard to do anything for about 30 seconds. It didn't hurt, but it was disconcerting, and I didn't like it. I paid attention to when it would happen, how long it would last, and how often in was happening. I couldn't find anything that triggered it, but it was lasting longer and longer, and it was happening more and more often. It had me worried, and didn't feel right. I went to the ER. This was before they had turned themselves into two ERs, one for COVID patients, and one for 'everything else' patients. They took me back, but I could tell they were impatient with me being there. I wasn't in pain, all of my vitals checked out, and I looked fine? What a waste of time. So, I was told there was nothing they could do, given some pain meds for a headache, and sent home. I was so embarrassed. It is not cheap to go the ER, and here I had just wasted whatever it was going to cost to be told I was having headaches (that apparently didn't hurt), and given a prescription for pain medication. Humiliating.
I went home, determined not to take the drugs since I wasn't in any pain, I was just being annoyed by this weird pressure. As the days went on, the episodes increased in frequency, duration, and intensity. And then they started to hurt. I had made an appointment with a family doctor, in the hopes that he might have a little more time for me than the busy ER doctors, and while I waited for that appointment to come, I got worse. The pain became so unbearable at times, all I could do was lay there. Poor Ellie got so bored with me. I don't blame her. I'm not a weakling, either. I have a very high pain tolerance, so for me to be knocked out like that was pretty unheard of. I will always push through the pain. This, however, was too much. It was unlike anything I had ever felt. It got so bad that I started to throw up. One night, I was in so much pain that I was laying in bed and went to get up, but the whole right side of my body had gone numb. I couldn't use my right leg or right arm, and even the right side of my face had gone limp. I was so terrified I started to cry. Preston helped me climb back into bed, and I lay there in agony, praying the waves of pain would subside enough that I could just go to sleep. They didn't. Preston brought me to the hospital late that night. At least I was in pain this time, so I had something to show for it. And a doctor with a little more empathy than the first.
It wasn't busy that night, so they got me in quickly, and I was wheeled back to the CT before long. They took a CT of my brain, and I was sent back out to gen pop where a lady two beds down (I couldn't see her because of the curtains) was convinced she was dying, and nurses kept going over to tell her she wasn't dying. I lay there for a couple hours while they put pain meds in my IV, and wondered when they were going to kick in. Honestly, nothing they gave me that night even touched the pain. They even gave me morphine. What kind of pain is stronger than morphine? They sent me home with some steroids and an antibiotic, and a diagnosis of "atypical headaches," and a command to "take it easy." Sure. I didn't go to my appointment with my regular doctor. I thought I had it in hand. For a couple days, it did seem to get easier. The headaches were less frequent. I was really tired, but optimistic.
We still left for central California during Spring Break, only for about 4 days, instead of the week we had planned because my issues had delayed our going. The 5 hour trip there was easy because there were so few people on the road (we've never made it through LA so quickly, without even slowing down!), and Ellie and I slept a lot of the time. I was taking my meds, but not eating as much as I should have. By the time we got into town, I was feeling really nauseated. About a half hour from Julie's, I even made Preston pull over because I was sure I was about to throw up. It didn't happen, and we made the rest of the drive without incident (maybe a little faster than usual). As soon as I opened my door, I threw up. At least we'd made it. I was a little bummed though, because normally, when I threw up, there was relief for a half hour or so from the headaches. It didn't happen. I went straight to bed, and prayed for sleep. Preston brought me some food so I could take my pills, but I could only eat a few bites. I had no appetite. He came to bed after awhile, and we went to sleep. I woke up about midnight and jumped out of bed. I started to run to the bathroom, tripped and fell, and started throwing up where I was. I got up and ran to the toilet, and left a trail. (I know this is TMI, but I want everything recorded.) Poor Preston cleaned up after me while I got in the shower. There was finally some relief at this point. I got out of the shower and we went back to bed.
The next day was less eventful. I spent a lot of time resting, and Preston kept trying to make me eat, bless him. I still had no appetite, and the headache would come and go, but for the most part, I could hang out with people and watch Ellie play with the kitten (the best), and watch recorded episodes of "The Price Is Right," one of our favorite pastimes at Julie's house. Finally, the night came, and I threw up again, but I had made it to the toilet this time. I was just so exhausted by this point. I started to cry a little, out of self-pity. What was going on? Why wasn't I getting better with these medicines? So much confusion and frustration. We went to bed that night, and I don't know that I ever went to sleep. I was in too much pain. Preston woke up with a fever around 2, so he went to go take some ibuprofen and a bath. Apparently, the bath cured him, because he was fine after that, and woke up feeling totally normal the next day. I got out of bed just feeling absolutely tired, and went down to lay on the couch. The headache really got intense at this point, and I had taken my drugs, plus migraine medicine, and I was still writhing. Preston gave me a gel patch to put on my forehead, which felt good, but didn't do much as far as the pain was concerned. Julie and Channing had an appointment that morning, and I remember them leaving. And that is the last I remember of Friday, April 3.
Preston left me on the couch since I had apparently passed out, and he ran some errands with Ellie. I was still asleep when he got home, so he let me sleep, and he put Ellie down for a nap. When he came back downstairs and I was still sleeping, he tried to roust me, but I was super groggy. He tried to ask me if I'd eaten, and I didn't respond, so he tried to feed me some food, and it didn't really work, so he let me sleep. When Julie and Channing had come back, and it had been a couple more hours since Preston had tried to wake me, he was getting worried. I was not coherent. He asked me if I had taken my drugs, and I responded with what seemed like an affirmative, "Hmmm." He got really worried at that point, because what if I had OD'd? At this point, he tried to get me sit up, which caused me to scream in pain (this is all second-hand, by the way. Remember I have no recollection of this day), and that was when he decided it was time to take me to the hospital. Things got really fun. I apparently told him I just needed to vape, and that my name was Baby. So incoherent. They put me in a computer chair that had wheels on it, and tried to cover me in a blanket to get me out to the car. It was too painful for me to walk. And even then, at some point, Preston had to carry me. I was in the car, throwing up, and somehow, he made it to the nearest hospital around 3:30-4 in the afternoon. Normally, only the patient can go into the hospital, but because I couldn't tell them anything about me (anything true, anyway), Preston got to go in to tell them my information.
He had to leave me there. That must have been so awful for him. Meanwhile, I was tied down to a gurney, and the next thing I remember was that I was dreaming I was in a hospital, and that I just kept wanting to wake up. I would go back to sleep, thinking if I could just wake myself up, I would be back at Julie's. I would wake up in the gurney, tied down, so so confused and angry, and do anything to wake myself up. I had to pee so bad, I eventually had the thought that I could just pee on myself and that would probably wake me up. But it didn't. I was still in this hospital dream. Eventually, I found myself talking to a nurse, grateful that at least she was kind in my dream. Not a mean nurse. She was asking me my name and the year, and I thought I'd just oblige her, so I went along with it and told her my name and the year. She said, "Oh good, you're waking up! It's been awhile." She then told me they were going to get an IV going, and I thought to myself, "If I feel the needle go in, then I'll believe I'm in a hospital." I felt the pinch of the needle, and reconciled myself to the fact that I must have actually spent all that time in the hospital. I asked for Preston, and while she undid the ties on my wrists that held me down, was told there were no visitors allowed because of the virus, and then I got really sad. I told her I didn't want to be there, and with all the empathy a sweet nurse can have, she said, "I know, sweetie, I'm so sorry. This is so hard." She was my favorite of all the nurses I had, so I'm grateful I woke up to her. Since I had become coherent, they were prepping me to be moved to a permanent room, and this baffled me. I was going to be in the hospital for more than a few hours. I'm young! This doesn't happen to young people without the coronavirus!
I asked some questions about how and when I had gotten there, and was left with even more questions. I had been acting crazy? They'd had to tie me down for my own safety, as well as theirs? I had screamed and raged at everyone? I was beyond confused and desperate to talk to Preston. They gave me a phone to call him, but no one knew how to make outside calls on it. So finally, he called the hospital and was transferred to my phone, and I was so relieved to hear his voice. At last, some familiarity! He had been as scared as I was, and I told him they were moving me to a private room, and I wished I could see him. He told me he was sorry I didn't have my phone or anything, and that he would bring it by soon. We hung up when they decided it was time to send me to a private room, and I got to watch the hospital ceiling and walls roll by as I took the elevator on a bed to the fifth floor. They rolled me to my room, where I would be for the next 9 days. Except for when they took me places for different procedures. Like the MRI they gave me that first evening.
On the morning of the second day I was awake, they told me I'd be taken down to radiology for a lumbar puncture or spinal tap. They wanted to test my cerebro spinal fluid. It hurt. I was told it was the actual numbing that hurt, not the needle itself, but that was a big fat lie. I felt the needle, and I felt when he pushed it into my spinal cord. I felt it "pop" in and then the numbing would kick in. I'm a trooper though, so I would really just take a sharp intake of breath through clenched teeth, and that's the only indicator the doctor would hear to know that I was uncomfortable. He would apologize, and they would let the liquid drip out of me. I was told the number of the pressure in the fluid was very high, an indicator that I was right when I described the pressure building in my head. I got wheeled back to my room, and left to order and eat hospital meals, and watch TV with commercials. I don't know how people watch TV that way. Preston dropped my phone off with some other things, and I had connection to the outside world. The phone in my room was impossible, I swear. I talked to family multiple times a day, if only for entertainment, as I was not even allowed out of bed for the first several days. But I talked to everyone for support as well, and I felt it. I had many many people praying and fasting for me, and I'm still so grateful. I definitely felt like I didn't need to fall apart because I felt so comforted. And I really didn't. I cried once that whole time I was in the hospital, and it was only when I was talking to my mom. I literally said, "I want my mom." Cue the tears.
Preston had to return home to continue teaching (Spring Break had ended while I was in the hospital), and Ellie went with him. We are so insanely blessed that my sister, Chelsea, only lives 45 minutes away, and that Ellie loves going to her house and playing with her three cousins, and most of all, that Chelsea VOLUNTEERED to take Ellie while I was in the hospital so that Preston would be able to work. He would not have been able to do it otherwise. Meanwhile, I was in the hospital, so very very alone. I missed my baby like crazy, and thankfully, Chelsea would FaceTime me with Ellie every day so I could see her, and Preston called multiple times a day. Julie brought me the sweetest gift basket and flowers, and Preston's aunt sent me flowers as well. I had so much love sent my way all the time. As lonely as I felt, I was grateful to so many for reaching out.
While all this was going on, I was having procedures often. More lumbar punctures, another MRI, a CAT scan, and I'm sure there were others. I was a medical mystery. I was still having headaches, and the only thing they found that would deal with my pain (even though the relief only lasted like a half hour), was dilaudid. A medication 7 times stronger than morphine. It was a heavy narcotic, which they would only give me probably once a day, so I made sure I was in the worst of pain before I asked for it. The relief was instant, but like I said, short-lived. Otherwise, they kept trying Tylenol (nothing), and other IV medications. I constantly had an IV. They were giving me fluids all the time, along with antibiotics, which they hoped were helping with whatever infection I had. I was poked multiple times a day, for different tests, along with having to have my IV moved all the time because I have really tender veins. The site would turn sour and painful and when this was all over, I looked like a drug addict with all my bruises all over both arms and hands. They eventually landed on meningitis as a partial diagnosis, but they had no idea what had caused it or was causing the infection. They kept trying different drugs, different tests, and still found nothing. Meanwhile, I was making progress. It was slow, but it was happening, and I was getting more and more impatient to go home.
On April 10th, I had a really odd day. I could not wake up. Try as hard as I might. Even when lab people came in to take the daily blood sample, I was barely able to keep my eyes open. Apparently the neurologist had come in to see me, but I wouldn't wake up. Preston called me, and I fell asleep while he was talking. My nurses kept trying to get me to wake up to eat, but I just kept felling asleep. We still don't know why this happened, but the next day, I was back to normal. I'm sure it was some kind of reaction from the cocktail of chemicals swimming in my bloodstream. I remember it was a really frustrating day for me, because I was bound and determined to go home soon, and it seemed like this would hinder that. Also, around the third or fourth day in, I developed double vision. Imagine walking around with your eyes crossed. I can't explain how annoying it is. I also developed a black spot in my right eye. It kind of looks like a crack that moves with my eye. Sometimes at night, it makes me think there's a ghost nearby because it's black. Again, super annoying.
However, the next day, since I was doing so well, it had been so long, and I was so done being in the hospital, the doctor came and told me she was ready to let me go home the next day, as long as I didn't take a turn for the worse over night. I was so excited and called everyone to let them know. Preston left home to drive to Fresno to come get me from the hospital, and I slept pretty lightly that night, knowing I was going home.
He brought me some clothes to wear home (the ones I had come in were covered in vomit), and we joyfully left the hospital, and I remember saying, "Good riddance!" as we pulled out of the drive. I was exhausted. We spent the next couple days at Julie's so that I could recover a little before we drove home, and it was so nice. We lounged around, spent time outside in the beautiful spring weather, caught the horses when they escaped down the road, and went to our favorite lake to visit when we're up there. It was beautiful, and still had snow on the ground. I was still dizzy, and seeing double, and easily exhausted, but happy to be out of the hospital. We left for home a little wary of being in the car for so long, but I did well. Slept a lot of the time again, and the drive was quick. We were home for about a half hour before Chelsea brought Ellie back, and I almost cried when I saw her. How did she already seem bigger? She was just has happy to see us, and we were so happy to be all together again.
That was a lot of excitement, so I had to lay down. Everything was so tiring. It was annoying, but I understood why. We went to bed fairly early that night, just because we were all tired, and I was hopeful the next day would just be an easy, relaxing day. My hopes were dashed when I kept getting headaches throughout the day, and nothing was helping. I couldn't believe it. I was being diligent with my medicine, relaxing, and getting sleep. How was this still happening to me?! Preston asked if we needed to go to the ER, or if I could wait for my appointment with my family doctor that we had set up for my follow-up from the hospital. It was the next morning around 11. I told him I wanted to wait. I was so sick of the ER. So I went to bed in pain, and eventually fell asleep. I woke up in agony at 3, and tried everything I knew to get some relief. Nothing worked. I never went back to sleep, but jumped out of bed to throw up. I got in the shower and cried. I was so confused and frustrated. I thought this was done? I thought I was through with this whole thing. My strength was totally zapped, so I got back in bed. I just lay there, desperate for sleep, but unable to find it. At 6, I got up to throw up again, and just sat on the floor in the bathroom, with no strength to get up, and contemplated my situation. What were we going to do? Preston came in and helped me off the floor and asked again if we needed to go to the ER, but I was determined that the answer was no.
I got back in bed to just wait out the time before we could leave for my appointment, while he got up with Ellie. I never did fall asleep. The pain was too much, and I had too many thoughts swirling through my brain to relax. Eventually the time did arrive for us to leave, and it took all my strength just to get dressed and try to remember everything I would need.
I remember when I had gotten to the waiting area that I was just exhausted. I wanted to sleep. But they called me back before long, and I met the kindest doctor I've ever seen in my entire life. He was an excellent listener, very empathetic, and very concerned about my case. He told me he was sorry, but that based on the things I had told him, he had nothing at his disposal for my level of pain, and that the best thing he could think to do would be have me admitted to the hospital, to be seen by the neurologist there. He could tell I was bummed to go back, and I could tell he wished he didn't have to send me, but we could both see the writing on the wall. I was going back to the hospital.
In just over a month, I went to the Emergency Room for the fourth time. Luckily, because my doctor had sent over the right paperwork, I went right into a private room in the ER, which was really nice. gen pop is not my favorite place to be. They stuck an IV in my arm, and 3 different people came to take blood from me in the space of the first hour and a half. I was told they were going to take me back for a CAT scan, and that it would be a few minutes. The reason I was left in the ER for so long is that it's on the same floor as radiology, which is where the majority of my procedures took place. It was convenient. So after a couple hours, I had the CAT scan. I was in my room for about 10 minutes before the nurse came in and asked if they'd done a lumbar puncture while I was back there. When she found out they hadn't, there was frustration, because apparently, it would have taken place in the room next door, and would have saved a lot of time. Anyway, I had another LP, the most painful of all, and found out the pressure in the fluid was higher than EVER. Excuse me? I've been on medication this whole time, and it's done nothing? In fact, I'm worse?
They finally took me up to the third floor where I talked to the infectious disease doctor, who was a really cool guy, and he said they were just as confused as I was. He said I'd be staying for awhile, and thankfully, Preston had taken me home before we'd gone for me to be admitted in the hospital, because I was much more prepared than the first time I went in indefinitely. Always bring deodorant.
I felt like my time at the second hospital went a little faster. I was more mobile, which was really nice. I could go to the bathroom by myself, which was pure luxury. On the second day, I was visited by a physical therapist (he was the coolest), who told me I needed to go on 3 walks a day around the floor, for the health of my muscles and heart. That really helped time pass faster because I kept thinking about when I'd have to go on my next walk.
There was one thing that didn't help the time pass faster. Sleep. There were a couple factors working against me at this hospital. Number One: The bed. I don't know if I was spoiled at the first one, but that bed was super cozy. At the second, I was always uncomfortable. Always. Plus, I hate sleeping in the stupid hospital gown. Hate it. Number Two: the banshee. On the floor right above me, there was a female of indeterminate age who would wail, basically 24/7. We're not talking your basic, "Woe is me," wail, no. This was a wail that would tear the throat in half of the average person. It was terrifying. And she did it all the time. And she would also jump off of things and land super heavily right above me. This happened all the time, day or night. So the doctor would come in and ask how I was sleeping, and I would tell him that I had a very noisy neighbor. I had thoughts that she would somehow break out of her floor, come down to mine, sneak into my room, and hide in my bathroom without me knowing. I made one of the male nurses check one time in the middle of the night. That's how scared I was. She wasn't there.
But I aside from those things, I made it through the four days of that stay fairly quickly. I was poked and prodded just as much as before, and I was really really sick of how painful my IVs would become. My doctors still had no full diagnosis, and they said they were doing all the tests they could think of, and were going to start on the tests for the more rare, unheard-of diseases. But in the meantime, I could go home. So they sent me home with prescriptions for all kinds of things, and off I went.
A week and a half later, the doctor called and said they'd finally figured out what it was. Lymphocytic Choreomeningitis, or LCM. It's an infection spread by rodents. Their spit, their poop, their pee, whatever, if a rodent has this infection, and you come in contact with some bit of them, it's possible to get this infection as well. It's pretty rare, and it's even more rare to get it as badly as I did, but it's even more rare for anyone to die from it. It just has the ability to make you miserable. And damage your optic nerves. Anyway, it's disgusting and we have no idea where I could have come in contact with something like that, but luckily, Ellie and Preston have stayed safe.
I need to talk about Preston really quick. He has been my lifesaver. My hero. He has taken me to the ER, picked up my prescriptions, brought me things at the hospital, kept my family updated, taken care of Ellie alone, packed her up for Chelsea's, kept me fed, made sure I've taken my meds, made me sleep, made me go relax, made me calm down, kept me entertained, and all of this while STILL TEACHING HIS FOURTH GRADE CLASS. He is so empathetic and sweet and smart, and makes sure that I don't ever feel ashamed or guilty for any of this, and just loves Ellie and I so completely. We are so so blessed to have him in our lives. We love him so much.
The last thing I'll mention, even though I could talk about this forever, is that there are some things I've learned. I've learned that the Lord will continually put me in a place that will force me to rely on others. Because I hate asking for help. I hate needing help. He continues to teach me humility. I've learned that there is no better support system than my family. Thank you all. There were so many who did so much to make me feel loved, or to make my life easier, and you all succeeded. I learned some more sympathy. My feeling so blessed and loved and comforted put into sharp contrast those who lacked that same support. I really felt for those who were in the hospital completely alone. With no one to call, and no one to send them flowers or texts of encouragement. I felt angels all the time, and my heart broke for those who couldn't feel the same. I learned gratitude. For all of this and for nurses, who are completely insane. I'm a fairly easy patient. I don't ask for much. To their frustration. They were always telling me that I wasn't needy enough. These crazy people go out of their way to make others feel better, and not just because it's their job. Because they're insane and they actually like people that much. I came to love them in their insanity, and I'm so grateful for the dozens who cared for me while I was away from home.
I'm glad this journey is coming to a close. I still have double vision and the black spot in my eye, but the headaches are very few and far between these days. #blessed
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