So I’ll start where I left off, in the days after surgery.
I was so sick of laying in bed, I think it had been about 10 days, I was ready to get out and do something exciting. which meant being in a little bit of pain. I was ok with that.
some people from my church host a live nativity every year. its on the front lawn of someones house on the “candy cane lane” of oxnard. I had my mother drive me since I was still on “the good stuff” aka norco. we borrowed a wheelchair so I didn’t have to walk too far. considering standing was difficult I wasn’t about walk through four blocks of crowded sidewalks. we met up with my good friend Margaret and rolled down the street to the nativity. it was freezing. and shivering was causing my gut to jiggle and I was not happy. except that I was cracking up when Margaret and I went for a stroll and she went full speed across the crosswalk to make it up the ramp and we crashed. I just about fell out of the wheelchair and everyone around us came running to help and we just couldn’t stop laughing.
the next morning was brutal, I was very sore from all the laughing from the previous days of adventure. but it was worth it.
I don’t remember much else until the week after when I woke up Thursday morning with two little red spots on my left hand. I figured it was a bug bite. thought nothing else about it. I washed all my blankets and sheets and pillow cases thinking maybe the bug would die. but that wasn’t even close to solving the problem. by the evening I had little red spots on the top of my left knee and on the tops of both my feet.
My first day back to work was Friday December 23rd and I was a few hours away from being around all my co workers again and feeding about 100 dogs. I was excited. that was until I woke up at 4am with my feet covered in hives and both my knees blotchy red. the itchiness was nothing compared to what I was about to endure. but I’m serious when I say it was miserable.
I ended up back in the ER on Christmas eve morning because my lips were swollen the hives were spreading so fast you could see it and I was starting to have trouble breathing. the ER doctor seemed like he just wanted to get rid of me, but they were mildly concerned about my swollen lips. he gave me something for my nausea and a strong dose of Benadryl and they sent me home. the rest of the day was a blur, but I do remember getting dressed up for Christmas Eve service and making it through service without scratching myself too much. I got home and knocked out on my bed upstairs while my entire family filtered into the house below me. I would wake up every couple of minutes to someone asking my mom “where is marisa?” I would just close my eyes and try to go back to sleep. When my sister got there she came up to see how I was, she tried to convince me to go downstairs but I felt awful. She left me and came back about a half hour later she came back with a plate of deviled eggs, that was probably the highlight of my night. but at that point I had a migraine from not eating anything earlier in the day and I just really wanted the night to end. It didn’t end until I made it downstairs to do my rounds saying high to everyone and sitting at the bottom of the stairs trying not to cry. I was so itchy. miserably itchy. I couldn’t believe it. I was super weak from malnourishment so I couldn’t even walk to the table to make myself a plate of rice and beans. I called my sister over to walk me over there and she helped me, thank God.
I remember having anxiety about eating because I had been vomiting. but I think i was too focused on trying not to scratch myself. I ate a small portion and gave up. every time I used my hands for anything the blood would start rushing to my fingers and they would start itching. So I ended up opening some presents and then crying because I couldn’t handle the itching. my sister brought me some ice packs for my hands and let me cry into her.
I had her help me upstairs and changed into shorts and a t shirt (thinking anything else would be too warm and make my itching worse). I climbed into bed and tried sleeping. I really don’t know how to explain how terribly itchy I was.
It went on for days. and then a week. and then two weeks. I tried sleeping but every time I would fall asleep I would wake myself up by scratching so violently. I woke up about every 20 minutes throughout each night. and about every two hours the itching would become so unbearable I would have to get in the bath tub with freezing cold water to calm the blood flow. I think one of the worst parts (there were many) was when I ran out of the oatmeal bath I had been using. It was like the world was ending and I would die by scratching myself to death.
after the first week of steroids I was a ticking time bomb. I also had a cold, or aspirate pneumonia (or both) it was hard to tell the difference ( I was told by my GI that every time I vomit, because of my hiatal hernia, a little bit would end up in my right lung causing the aspirate pneumonia). I had a bad cough and a runny nose and was covered in hives. At this point I was ready to give up, in fact if you ask my mom she might say that I did give up. If you’ve ever been on steroids you know what I’m talking about. I was a mental mess. And all I wanted was a hug. but being my generous self, I gave my mom the cold I had. you’re welcome mom. So she was in no shape to comfort me, needing some comfort herself. I felt so alone. I knew I had God to lean on, but I needed a psychical hug. I was at the breaking point. On the edge. and then I fell.
I broke down in tears, sobbing into my pillow, screaming so hard a was gagging. I just needed someone to grab me and tell me everything was going to be ok. but quite the opposite happened. And I don’t blame her. My mom came in my room and asked why are you crying. I know my mom doesn’t understand depression or anxiety so I really can’t be mad at her for not understanding. so I’ll blame the steroids for making me shaky and volatile. We argued for a few minutes before coming to an understanding that neither of us understood how the other was feeling. And did what we only know to do at a time like that. We prayed.
a few days later was January first, the pajama party for children ministry at church and we (the ride or die crew) bought matching leopard onesies to wear.
I was still a mess, having thrown up the night before and screaming my head off again. I was back in the ER for new years eve. sitting in the waiting room watching the ball drop. they called my name and I never realized how much I hated the question “whats going on” until that night. I was so pissed. and I was rude to the doctor. “WHATS GOING ON?! WHAT THE HELL DO YOU THINK IS GOING ON I’VE BEEN FREAKING COVERED IN HIVES FOR TWO WEEKS AND YOU DONT HAVE ANY ANSWERS FOR ME THATS ‘WHATS GOING ON'” I screamed at him in my head. but on the outside I was frozen. glaring at him with these eyes that yelled “help me.” He had no empathy. I did actually throw my blood pressure cuff at the wall and cussed him out when he said “why are you looking at me like that?’ I admit that was not a very christian thing for me to do but maybe that gives you an idea of how frustrating it was not having answers. He then started showing some compassion towards me and my mom. I went into a room and they continued giving me fluids and started me on a stronger dose of steroids along with Benadryl and Pepcid. I would be there for a couple hours for the bag of fluids get in me, and as soon as it was done I was ready to bolt out of there. I hate hospitals. and ERs. at least when I’m the patient. but thats a whole different story. We got out of there around 3am I think. and I was able to sleep for about an hour before waking up to take yet another cold bath.
That morning was Sunday January first, I put on my leopard pajamas and went to church with my mom. We met up with the rest of our team in the nursery where we serve with the infants-two year olds. It was pretty uneventful as I remember. And I felt awful. I probably should have stayed home. but I couldn’t get prayer at home and I knew church is where I needed to be, surrounded by people that cared for me, and more importantly the Lord. I was in no shape to pray for myself but I desperately needed prayer. after we served with the babies, we went to service and I broke down in tears yet again. I vaguely remember what was taught that day because I was trying my best not to vomit all over the first row in front of me.
When service ended I was crying and feeling worse than the night before. I think I had gone a full two weeks without good sleep. I just needed rest. I was crying so hard I caused a scene and my mother pulled this wonderful couple over to pray for me. I can’t thank them enough for starting what was one of the most powerful prayers I have ever experienced, I was literally surrounded on all sides by people that love me and wanted to pray for me. with their hands stretched over me, I actually didn’t feel alone in this battle at that moment.
I made it to the car and eventually home just in time to throw up in the drive way. It seemed to never end. (it still hasn’t ended) I made it upstairs to rest, I ‘slept’ for a few hours and woke up to my sister asking me how I felt. I don’t remember anything after that.
that Thursday was my first appointment with the GI since being released from the hospital on the 15th of December. I was still like a zombie because of the steroids. I hated everything. I didn’t want to eat. and my blood pressure was so low I couldn’t stand by myself. when the doctor saw me he seemed worried that I wasn’t any better and had actually gotten worse. so he ordered more blood tests and and mri of my abdomen because I was having pain again. along with all the other symptoms.
I went to my dads that weekend for the condors outdoor classic. I was so sick. I should have stayed home. but I had already missed so many hockey games and I wasn’t about to let nausea and hives stand in my way. Friday was the alumni/celebrity game and I wasn’t that excited, until we got there. When we parked I saw this nice jeep park in the row across from us and pointed out the license plate to my sister (its a thing we do if we see one thats not California) it was Michigan if I remember correctly. I was talking to my sister about another out of state plate I saw the day before as we were walking past the jeep when something caught my eye. It was Taylor Beck. I did a double take just to make sure my eyes weren’t deceiving me, and as I looked back Michael Latta got out of the back seat. Im not gonna lie, I lost it. I flipped around so fast to tell my sister and I blurted out “oh my God, thats Michael Latta” if you can imagine all those words slurred into one. I freaking love this guy, as a player of course. when he played with the Capitals with Tom Wilson, that was magic. They were the best together. I was so giddy. haha. I turned back around to see if they were close or if I was in the clear to express my excitement to my sister without sounding like an idiot in front of one of my favorite hockey players. nope. not clear. abort mission. red alert. they were right behind us. so I made a fool of myself
I turned and walked away.
oh my gosh. what the hell did I just do. probably missed my one and only chance to meet Latta and I blew it. NOOOOOOOOO thinking ill never see him again in my life. oh well. on to the game. then the next day came around and we waited around the house playing with the dogs. game time. we left the house bundled up ready to sit through the rain and watch some outdoor hockey. as we walked up toward the stairs we passed the Reign locker room and I glanced in, there was Latta, so of course I did what I do best and made a fool of myself once more. “LATTA” I screamed and kept walking. my sister couldn’t believe I did that, and yet I in fact had just done that. We enjoyed the game, watching the Bakersfield Divas complete the comeback in OT, thank you Griffin Reinhart.
After the game I joked and asked my sister to wait with me outside the Reign locker room in hopes of seeing Latta again and actually being a regular fan and asking for a photo. she obliged. wasn’t happy to wait in the cold but she did, thanks sis. I was looking down at my phone to check the time, I told her earlier that we would only wait ten minutes and if he didn’t come out we would leave, I had 2 minutes before we would be leaving and I looked up.
“Latta! can I get a photo!?”
He was right there and said yeah just a minute ill be right back.
I didn’t think anything of it, but my sisters friend made a comment about him not coming back and being a jerk. I guess thats a possibility. no. no way he’s not rude.
He did come back. I got to meet him and ask him how much he missed Tom. and I got my photo. THANK YOU JESUS
We came home that night (i mean the two hour drive home) I slept a few hours before waking up to hives again. but thank God that was the last night I would wake up because of itching. I was moderately healthy for a few weeks, going to work here and there a few short shifts and a few long ones. and I seemed to be on the road to recovery.
That was until I tried to eat solid food for all three meals everyday. That was probably a bad idea. But I did it and I didn’t get sick. so I thought I was fine. It hurt every time I ate. like a burning sensation directly beneath my sternum. I just though it was heart burn or something like that. but when the pain started to spread down each side under my ribcage I got worried. I went two weeks and two days without an ER visit. But Tuesday January 17th I was at work and the pain stopped my dead in my tracks. I couldn’t breathe all of a sudden there was stabbing searing pain throughout my abdomen. I was the supervisor though and I couldn’t leave my team. I would be fine. Nope. there it was again. Couldn’t move. It hurt to breathe. I got out of what I was doing to go find the GM and tell her I needed to leave. She figured it out (thank you Alex) and I was able to leave a few hours early. I drove myself home, how? i don’t really know, probably by the grace of God. I called my mother and she was on her way to pick me up and take me back to the ER. it was the busiest I have seen in my few trips. I waited in the lobby for probably 45 minutes before getting brought back to a bed in the hallway. The ER doctor was the same one I saw when I was having the gallbladder pain so she called my GI and told him I was there. They didn’t give me anything for pain because I told them it was coming and going. and there was no way to tell what it was coming from. the only test they did that night was another hida scan to make sure there was no leak from surgery. When the GI got there he told me the blood test I had done a few weeks before came back positive for Crohn’s disease and that could be the cause of the pain. there wasn’t a leak and I was sent home.
I went to work on Wednesday for a meeting and told the managers what happened in the ER. sat through the meeting and went back home to rest. I think I worked Thursday it was only a 4 hour shift. I spent the rest of the day running to the bathroom every ten minutes because my bowels were freaking out over who knows what. Friday I was off from work and I spent the day trying to figure out what to eat that wouldn’t make me sick. I did laundry too and fell sleep on my bed for a ‘nap’ only to wake up five hours later to my sister talking to my mom about what I had been going through the last two days. My mom was worried about the diarrhea so she called my GI and he ordered a test that she had to go pick up and told her to put me on a BRAT diet. and I was supposed to poop in this thing and ew. ill spare you the details. I didn’t end up pooping again until three days later and it was not relevant anymore.
I was scheduled to work Saturday January 21st from 1:15 to 9:15 and I was sure I would be ok. I slept in thinking more sleep would help me be up late at work. I got up to eat breakfast and felt sick. I ate applause and started to get worse. the pain in my abdomen was getting worse in each wave. my hands were getting clammy. I was about to puke. I slowly walked up the stairs, into the bathroom and kneeled on the floor in front of the toilet and let it come out. a few minutes later, I was crying again and trying so hard to be ok, my mom came in and asked what I wanted to do. I wanted to go to work. but obviously that wasn’t happening, so I told her to call my work and tell them I wouldn’t be coming in and why. She then asked how my pain was and it was creeping up to a 10. She called my GI and he said to take me back to the ER.
here were go again. we were really at a loss at what to do. I had given up. again. I just wanted answers. I still want answers. I had never realized how many different kinds of pain existed until that day. Im sure I have experienced it all now. They got me in pretty quick and had trouble getting the iv in because my veins were so scarred from all the other times I got poked. once the nurse got the iv in she drew some blood for tests and gave me a dose of dilaudid. that had worked before for the pain from my gallbladder. this was different. I whispered through my tears to my mom “i think its making it worse”
it was. I’m going to to my best to describe the pain, searing cramping burning stinging twisting. i don’t even know what was happening. I felt like a demon was trying to come out of my abdomen. think, bella swan in twilight when she was bitten by that vampire. i was writhing in pain. my mom said “let them hear you” she knew i was holding back screaming and crying. i was just moaning and groaning in this excruciating pain. I started yelling “WHAT IS THIS” as if anyone knew what I feeling. over and over I screamed until my mom got so fed up that she walked out of the doorway and said “can we get some help in here?!” three nurses and the ER doctor came running in and tried to figure out what the hell was going on. the doctor said “lets give her some dilaudid” my mother protested “thats what made it worse!” the doctor snapped back and said “well i can leave her like this” my mom agreed to try it and with in a few seconds the pain got even worse. the nurses left and the doctor was talking to someone on the other side of the curtain in the room, she said “valium?” the doctor agreed.
when they came to give me the valium my mom asked what it was for (she’s a retired parole officer, she knew what it was for) and the nurse said, “it’ll make her go to sleep”
it didn’t. I did calm down and the pain got better but it never completely went away. they took me for a CT of my abdomen and pelvis. I couldn’t lay still enough at first and the technicians did their best to calm me down and help me breathe. they got what they needed and took me back to my ER room.
a few minutes later the doctor came back and said “we’re going to admit her for observation and pain control. Her CT came back clear except for a cyst that just ruptured on her right ovary. but her pain is too high for it to be the cause.”
wow another hospital stay. great. I was in the hospital from Saturday to Tuesday. They did an MRI on Monday and it came back clear. still no answers for the pain. I started to think it was all in my head. haha what a joke. I was on a clear liquid diet for the first two days and then was advanced to a full liquid diet. that was a mistake. eating tomato soup was so painful. but it tasted so good. they did test on Tuesday morning to see how fast or slow my stomach empties after I eat. so you guessed it, I had to eat. real food. well kinda, I had scrambled eggs (the powder kind) and a bite of an apple and some small bites of an artificially flavored blueberry muffin. the apple was the worst part. the test took an hour and a half. and came back normal. they sent me home.
but I was back the next morning at 6am for a colonoscopy. that was fun. no. there is nothing fun about that. but we got a small answer, I have a twist in my colon. that causes pain sometimes. but according to doctors, it doesn’t cause this much pain.
its been two weeks since then and I now have gone to get a second opinion at Cedar-Sinai in beverly hills. Ive seen that doctor twice. and my final test is this Wednesday. its called a small bowel capsule endoscopy and it takes 9 hours.
So far theses are the things I’ve been diagnosed with or things they have found:
biliary disease, a hiatal hernia, celiac disease, crohns disease, tortuous hepatic twist, and the latest lymphocytic gastritis which is a very rare disease that no one knows about.
in my eyes they are all wrong, and Im 99% sure I have Sphincter of Oddi Dysfunction.
Im exhausted and I still need to write about the last 48 hours.
So if you’re going through hell, keep on going.