Who is that girl I see

          I always have loved the song Reflections from the movie Mulan. Maybe it was the fact that there was an Asian princess in the movie that first attracted me to the song. I don't know. But now that song has even more meaning to me. As you have read in past posts, I had a very hard time looking in the mirror after I had the stroke. I just felt that the girl looking back at me was broken. There were so many things that I wanted to do that I felt like I couldn't, because this was holding me back, but in reality I was holding myself back. All I was looking at was the things I couldn't do anymore. I couldn't play the piano to my full potential anymore; something that I had been working for since I was four years old when I first sat down at the piano, I couldn't type at over 100 WPM anymore, I couldn't walk normally anymore let alone run, I couldn't hold a conversation anymore, my personality was turned inside out, all the negatives I saw. What I didn't see, or I refused to see were the positives that came out of this because I didn't believe there were any. I would wake up in the morning and immediately look at my arm, which was mangled in a position that you really would only see in a car crash because my muscles were so messed up, and they expanded and contracted almost as if I had cerebral palsy. My hand was in a fist so tight, there were nail marks in the palm of my hand, and I could only open it with the assistance of my other hand. This happened every night. "Oh you just need a brace", my mom said. Yeah that worked for a while, until I broke it in half literally because my muscles in my hand were and are still so unbelievably spastic.
           I felt like every time I looked in the mirror I would look at my reflection and see this image of who I had turned into, not who I wanted to be. I didn't want to admit that I had changed. I would do things with my left hand, while looking in the mirror and see how easily I could do them, and then see IF I could even do them with my right. I would smile and see how effortless it was for the left side of my face, and how the right side of my face quivered with exhaustion for a few seconds and then I would have to let it rest, and stop smiling. All these things that used to be so effortless, now were and are impossible. How on the computer, it would look like the mouse was having a seizure every time I tried to maneuver it with my right hand. It would just jerk all over the page.  All my friends now say, "Oh I can't really see you any different", etc and to that I say with a shy smile, "I'm kind of glad you didn't know me before then, because I think you would be disappointed. And to that they say, "Well how was your personality different?" And it's not really that it was different, it was just that I was so much more carefree, I had a much more I don't care attitude, yes I was still sensitive and shy, but if you were a close friend I didn't really care how I acted with you. But now I felt like I needed to hide the way I was from everyone, because I was so different.
          I'm now remembering my communications class senior year, and I know you're thinking Communications? I thought you were a science major, and I am, I just wanted to take it. I had no idea how that class would be so informative and trans formative for both my personality and for the way I looked at myself in the mirror. I remember, an assignment we were supposed to do on our personality type, I had taken the quiz and had thought, "I figured" with the results. And then I was looking at the project, thinking, what am I supposed to do? This is such an easy project but so difficult at the same time. But then a light bulb went off in my head, Nobody likes their personality 100%. And everyone has secrets. Where do they hide their secrets? Their heart. So that's what I'll do. I'll make a heart that opens, and I will put all my secrets on the inside. And I filled it with hospital stuff, but then when I was done, I almost had a little panic attack. I thought, "What are you doing!? You don't want to show and tell all of this!?" I can still see myself up there, my legs shaking, about 20 sets of eyes just staring, seeing that the heart I carried open, and wondering what was on the inside. And when I did open it, I sort of looked down as I opened it because I didn't really want to see what their faces looked like. And I heard an audible gasp. I swallowed hard, and started to talk about my project. And after, I sat back down, and everyone was still staring at me, I was thinking, "OMG this was what I thought it would be, why did I do this, but then the next day when I got my teacher's comment sheet, she said, that more than half the class, came up to her after my presentation when class was over(I didn't see them, all I wanted to do was get out of that class as fast as I could) and asked her to give me an A, that they would never be able to do something that brave.
          I wanted to post a video that I saw the other day, it is definitely a tissues video, so if you're a crier, get your tissues ready. This is what my arm would do at the beginning, and it illustrates what I'm talking about so well. This is why I absolutely loved this video.
https://www.youtube.com/watch?v=-jvEniCbOJQ

Life After College

With the New Year already 3 months in, what have you accomplished? What have you "gotten on the phone and told your mom about." Have you done anything worth praising? These are all questions we ask ourselves each day... I'm working at Chicago Scenic Studios right now as a secretary. And I know what you're thinking, not the most glamorous job, or what about nursing school? I know I said I was going to do nursing school, and I still want to be a nurse with my entire heart and soul, I just don't know when it's going to happen.

Seeing the movie Cake was both inspiring and eyeopening.  I had shut everyone out of my life health wise, I never told anyone when I felt bad.  I didn't quite take it to the extreme that Claire did, but I had basically stopped trying. I became complacent in where I was; I didn't like it, but I also didn't hate it; and basically didn't try any harder to move anywhere. It took me until I was stared in the face with some pretty tough realities to make a move. And there I was: faced in 2 months with no health insurance, and a chronic illness. Those are two very big pills to swallow and two things I knew were never going to go away no matter how hard I tried to get them out of my head. My parents didn't want to scare me, but they didn't want to sugarcoat anything either, they knew I had to take this seriously, and they knew scaring me with the facts was the only way I would take it seriously. My parents knew I had everything in me to find a job, but did I? No of course not. I had always thought I was this painfully shy, would rather go to the dentist than have an interview kind of girl. But my parents said and I think it's the best piece of advice they've ever given me in my adult life, "Don't look at it as an interview, look at it as just a conversation, with one of us. The two people you're most comfortable with. And those words have gotten me through some very scary interviews. I can put that one on the shelf as one of the many wonderful lessons I've learned from my incredibly giving, loving parents.

I had always thought to myself, if we thought of ourselves at the age of innocence (which to me is 4-5) and we told ourselves all the "bad things" we were going to do in life, how would we respond? I know how my 5 year old self would respond. If I told myself that I would do "OK" in school I would be not trying my hardest, but not failing, would be given anointing of the sick, upwards of 35 times before I was 21, and almost die on an operating table more than once, I'm sure my 5 year old self wouldn't understand what I was talking about, but I'm also positive that she would say, "Noooooo, because then mommy and daddy wouldn't be proud of me... All I've ever wanted in life, and even as an adult is my parents approval. And then I would look back on my life. Have I done things that have made my parents proud? I know they  tell me all the time, how proud they are that I've made it this far, but I'm still convinced that's because they really don't know what its' like to be in my shoes. I'm not just gonna sit there, and say, "Oh I'm too sick", I did that before, and it didn't make me any happier, but I also know they would never understand what I was going through, no matter how much empathy and holding my hand the whole way they gave me.

I've always known with my condition, it's essentially you're fine until you're not, and when you're not, you need to move relatively quickly. I've known this my entire life, but it's never scared me more until now.  I'm trying to start my life, date, move out; how am I supposed to do that, when I have this black cloud hanging ominously over my head... My parents say I shouldn't wake up every day thinking my shunt is going to fail, and I get that, but every time I haven't thought that, it happens... I've always told myself and others that I would never stop fighting...But was that really true? I am fighting an unbeatable force. A force with no cure and a statistical rate of failure at 50% within the first two years, and statistics all over the board for every year after that. I wondered, would I ever be able to hold down a full time job? What happens to my job, if I have to have surgery? I think about these things a lot more now, than I even did during high school when I was clinically "dying" or college, when I traveled all the way across the country looking for answers. It didn't really hit me until I was out of college and couldn't hide behind my parents anymore; I could no longer hide behind my mask, of how I wanted everyone to see me, because my affect and the work I did at my job depended on it.

Everyone who hears my story and is educated about hydrocephalus asks me the same question, they say, "Oh have you ever had the 3VC. or ETV, whatever they call it and then they start telling me how great it was for them, and how they never thought they would ever live without a shunt until they had that procedure. Part of me hates to crush their great thoughts of it, but the other part of me wants to tell them, that for some anatomical reason it doesn't always work out that way. If you're 3rd ventricle is too close to your brain stem, or if they snip a blood vessel like they did in me, it doesn't always work, and you will be forever dependent on the shunt which has won the award for most undependable human body device. And having this many surgeries in this short amount of time can sometimes leave you in chronic pain. Those are terrible realities but sometimes it isn't your choice, you're just forced to accept it. I remember when I was 11, my mom had said to me, "You probably don't even need your shunt anymore, but they would never take it out, because they don't know". Oh to go back to those simpler days.

My attitude every day when I wake up and realize I'm still on this Earth, is, Make the most of it, God had you wake up today for a  reason. My scars remind me that the past can never be forgotten, but they also tell a story that I would never be brave enough to tell on my own. My arm and leg remind me of the most painful 6 months of my entire life. When you've stared death right in the face, you view life completely differently and I can tell you one thing. That I'm loving my view right now!

Cake Review

Let me first start out by saying, this movie is not for everyone. I didn't think it was for me until about the last half of it. I was in the theater thinking, “Oh my Gosh, this IS everything I didn't want it to be. And I was heartbroken. But then something told me to just keep watching. That it would get better. And it did, and when I walked out of there, I said to myself, “Kimi you need to see this again. Knowing what you've gained from watching this movie once, you can only gain more from watching it again. So I did. And I started to analyze Aniston’s character, and compare her to myself. I thought, “If you had been through everything that she’s been through in this movie, the guilt alone I believe would drive you to suicide. Having to look in the mirror every day, and see the scars that show you that you’re still alive and your son isn't, would just make you crazy. She doesn't know what to do with herself. She feels as though life is no longer worth living. And she has driven out every person in her life that means something to her because she has lost the one person who she felt needed her the most.

          She has lost everything and she doesn't know if she will ever get it back. Or if she even knows how to get it back. And you don't realize the magnitude of the things she's lost until much later in the movie and then it's like a light switch just went off, and you think, or at least I thought, “OMG I get it now.” She has pushed everyone out of her life other than this Angel of a housekeeper, who for some reason stays around, despite the verbal abuse and the constant pressure from her entire family to quit because she sees what everyone else refuses to see, and she won't give up on Claire’s character. But through the movie, you see little looks into the past, of the woman that Claire used to be, through her sense of humor, and you learn that she was a very successful lawyer, she was happily married, she had the American Dream. And then one minute changed her life dramatically. She feels as though she can't move on, because she feels like moving on means forgetting... And as the movie goes on, you learn more and more about her and her life and you realize why she does the things she does. Some parts in the beginning may not make sense, they didn't to me, until I watched the entire movie, and then I thought back, she makes those bad decisions, because she’s looking for love and acceptance in all of the wrong places, because she thinks she has no One. This alone, gives you a peek into her emotional state throughout the movie and her vulnerability that she has placed upon herself.

After watching this movie, knowing full well that it was going to get some bad reviews, I specifically looked to my chronic pain support group that I had joined on facebook. Now let’s be real here, we all know I just joined groups like this to read everyone else’s posts and to read about their coping strategies etc. And I had read a post a few days before that said oh this movie is coming out and I want to see what everyone thought about it etc. And so I read some of the answers, and they were very mixed. As I was expecting. But a lot of them said, “I don’t like how this movie focuses on her drug addiction and not her chronic pain.” Now when I watch movies I analyze them, which is part of the reason I watch them multiple times within the first few days. I thought, “Well, there are many angles at which I can approach this statement. But then I thought about it. Yes it’s true, it only shows her in her support group once, and it shows her taking pills probably a dozen times or more. But if you really watch the movie, from her wincing at each step she takes, to how she has to lie flat in the car, everything she does shows you what terrible pain she’s in. I didn't think they needed to keep telling you. And quite frankly, a lot of the reason she is the way she is in the movie is because of the drugs.

          All throughout this movie you see different people who really care about Claire’s character, try and “break their way through” unsuccessfully. Claire has closed herself off so totally because every day she has to look in the mirror at herself and realize and relive all over again the horror of what she had been through. She is reminded through the physical scars, but also in every step that she takes. I used to feel that way too. I felt like every step I took, every word I wrote, every word I spoke, was another reminder, that I wasn't the same person anymore and was never going to be that person again. I said in my last post, I used to look in the mirror all the time and literally start crying because I felt like the girl staring back at me and myself were two completely different people. And Claire is faced with this and the overwhelming guilt that she is alive and her son isn't. And by doing so she has caused a huge divide between herself and the people she once loved the most. Everyone has given up on her except her housekeeper, Silvana. Because she sees what everyone else doesn't see or what everyone else has given up on, because they feel Claire has given up.

          I feel like Nina’s character was almost put in the movie as a catalyst to show Claire what she was really capable of. She reminded me in a very remote way (lol you'll know why I say lol if you see the movie) of my mom. She was always there; giving me tough love when I needed it, but also there to show me that I could do it, all I needed was a little reassurance. I remembered when I was watching this movie my first day of my PT, OT and speech. When I was told to pick up a pencil and write my name, and then I could barely pick up the pencil, or when I was told to get on the treadmill and my leg felt like I had a lead weight on it every time I picked it up, I just cried, and my mom was there to wipe my tears away and say, “I’ll be right here with you,” I knew she was never going to know what it was like to go through what I was and am going through, but that’s the way I want it. I love her too much to ever switch places with her if that was even possible, even though I know that she would switch places with me in a heartbeat, but I always tell her I would never let her.

          Honestly, with every time I see this movie, I learn more about it, and that just makes me love it even more. And I think it takes seeing it sometimes 2-3 times to see that. I’ll be brutally honest, when I walked out of that theater the first time I was crushed, I didn't feel as though I liked the movie, and something told me to go back and see it again. I think it was all the unknowns that were in my head at that very moment. But having Jennifer Aniston, one of the most famous women in Hollywood, do a movie on such an unknown medical condition, is a Godsend. It’s just going to make people more aware, but also it’s going to help the people who are aware of it, but maybe don’t understand it. Maybe it’s going to help the husband of the wife with chronic pain, who thinks his wife just wants sympathy, or maybe it will help the sister of the girl with chronic pain, who thinks she is faking it to get attention. Who knows? But I truly loved this movie, and I can’t thank Jennifer Aniston enough for doing it! I don’t know if she knows how truly amazing she made the chronic illness community feel with this movie, but I only hope that she got out of this movie what she was hoping for.

Cake

I've recently come upon the movie “Cake” with Jennifer Aniston. I saw that it was about a woman with chronic pain, so obviously I was intrigued. Honestly, my first opinion before I really researched what I could on the movie was, “Why would someone make a movie about something so depressing?” But then I thought about it. People who have this, (I don’t even know if it’s fair to call it a stigma, because let’s face it anything with the word pain in it kind of signifies something negative,) usually do denote a bad stigma towards it, and therefor don’t talk about it with other people. In my case, I don’t want to make other people feel awkward. Because I know how you tend to sit there thinking, “OMG what do I say so I don’t sound like an idiot; I have to say something so it at least looks like I care?” And then you either say nothing, keep nodding, or you say something that makes you look like an idiot.  I started to think about my journey through chronic pain and where I am today. And yes while my smile may fade in and out at times, if I’m stuck going to the doctor once a month for the rest of my life, I know I have gained so much more than I have lost. That being said, I don’t want people to think I’m constantly in this cheery happy mood all the time, because trust me I’m not. However, when I’m out with people, I do admit that I do tend to put my mask on, and be happy, because I don’t want to burden other people, and I’m 25 years old, who wants to stay in on a Friday night, even if you do feel like crap? I tend to have my “I feel sorry for myself, contemplative” periods of time, when I’m by myself. It’s really true when people say, “I do all my crying behind closed doors then when I open them, I’m back looking like Aubrey Hepburn.” And you have now heard it from a chronic pain sufferer herself. It’s true! At least in my case it is. 

When I saw that this movie was going to come out, I started watching the trailer and researching like crazy. I honestly wanted to see if the trailer truly did it justice. Because come on I’m Asian, I’m not going to spend like 15 dollars going to a movie, getting popcorn and a drink if the movie is going to suck. Right after I saw this trailer for the first time, I had two overwhelming thoughts in my head. One being, “OMG she does such a good job I really want to see this.” And of course because my brain is the Jeckyl and Hyde of brains, the other half said, “This trailer is the epitome of what you have worked so hard NOT to become why would you ever want to see this?” And I can’t answer that, at least not until I see it. But after watching the trailer about 100 times, and watching every little mannerism she uses, and after watching many YouTube videos about why she wanted this role so bad, I can say with a lot of confidence, “I can’t wait to see this movie even if it does illustrate what I have worked so hard NOT to become.”  It’s like she said, ‘Chronic pain is such an invisible condition, and most chronic pain people crave normalcy, so they try to live their lives completely normally.’ But that has a backlash. Then people think there is nothing wrong. So it’s this endless cycle. I try not to have too many of those I feel so bad for myself times, because I do know I am going to be dealing with this for the rest of my life, however long that might be. So I see it as, don’t complain about something you’re never going to be able to change. But it’s because I had a normal life at one point; that’s the reason I crave it so much.

I felt like I could really connect with Claire’s character. Even just by watching the trailer. I did like I said look this up on YouTube, and basically watched every interview that Jennifer Aniston did for this movie, and she said that you could begin to see through the movie just shards of Claire’s personality before “the accident”(I still don’t know what that accident was all I know is it was an accident). And I felt for a loooong time that every time I looked in the mirror the girl looking back at me was so different and broken than who I thought I was, or was supposed to be. But I would see it too, little shards of my “previous personality” coming through in different situations and I’m slowly beginning to realize that they were there the entire time, it just took a little bravery on my part for them to come out again. A lot of my college friends are saying, I can’t imagine you any different, and it’s not really that I was different, it was just that I was more carefree, I was more innocent, because quite honestly nothing “Really Bad” had ever happened to me, and I think while everyone looks at the phrase, “yeah I grew up” and gives it a good connotation, it doesn't always happen that way. Yes I grew up, but I was faced with a lot of decisions no one ever has to face in their lifetime and I was faced with them when I wasn't even a legal adult yet.

I kept pushing away any feelings that I had about this at all, because I was so focused on graduating high school on time, because I came back senior year and I was basically a year behind, and so I just kept focused and whenever anything would come back to me like a flashback I would just push through it until my nerves were so desensitized that I felt like I couldn't cry about any of it, and I didn't, not until six years later. And that put a lot of stress on my relationships with other people as well. It was like that “elephant in the room” except I was the only person who could see the elephant, all my friends could see that I was stressed about something but none of them knew what it was because I wasn't going to talk about it. And it was this way for a long time, but I slowly began to realize that it’s not always as painful as you think to talk about it. And sometimes it’s healing. You never know if you know how to swim until you jump in, and I jumped. I may not have had a life jacket on, but as you can see I’m doing pretty well……….

The True Meaning of Christmas

Let me just start this out by saying I’m starting to feel very different about the past. Before, I was honestly just trying to get through it, & when it was over, it was over. In the past. Done; etc. But now I know it will never just be a part of my past & that’s ok. I am getting stronger every day, but I do have moments, where I think to myself, “OMG, I made it through what!?” & YES I do feel like I have missed out on plenty. I know people like my mom, try to put me on this glorified pedestal but I’m not really. I’m human just like everyone else, yes, I do feel like I've missed out on a lot, YES I do get sad about it. & I’m starting to realize that’s OK. I don’t like to do it all the time because I feel like everyone has this “amazed” picture of me, where I am strong all the time, & I don’t want to let anyone down, but in reality I’m not. You read in my last post, when my parents left that night, I cried for two hours & for days before that. I just never wanted to admit to what it was all about because I felt like if I did, then I was letting it win. But now I know that humans crumble. It’s part of our nature. So does the Christmas season not make me as cheery as it once did? Yes. Is that OK? YES! OK. Now I’m ready to start my post.

December 13, 2006. When you see this date, you might try & think about what you were doing that day, or maybe you’re thinking, “Oh hey, that’s kind of close to Christmas” but that day has a completely different meaning to me. Nine years ago, I was laying in Evanston hospital wondering what was wrong with me & whether I was going to live or die, because of what Dr.’s were saying, or rather not saying. I had just had a shunt surgery, the month before, had a “fantastic” recovery, was all caught up in school, getting ready for finals in January. & one day, about a month after surgery, I woke up & I couldn't really stand up straight. It was like a rubber band that has been stretched to its ultimate capacity. I told my mom, & she said, that if it didn't get better that day, she would take me to the doctor. I remember that night, telling my mom I wanted to sleep downstairs, I can’t remember why, but I just wanted to. Now that I’m remembering what I went through that night, that decision was one of the worst decisions I’ve ever made. I was up all night. Crying, I couldn't move, but I felt like I had to in order to escape the pain. I eventually fell asleep just from pure exhaustion. The next day I told my mom what happened, & she knew something was wrong. She decided to keep me home from school & we went to the pediatrician later that day.

At Dr. Nelson’s office, she asked me to lay down, & felt my stomach. She immediately became concerned & said I should get to Evanston hospital because she thought it could be appendicitis. We went to Evanston, after my doctor called them to let them know what to expect, & to give them an overview. They immediately wanted to do a CT of my abdomen. I remember going into the CT machine, arms over my head, & just watching the film spin around, that is to this day what I do during CT’s. We went back to my “room” in the ER, & doctors came rushing in almost immediately. They said, “She has a mass in her stomach & we want to drain it out”. Honestly, immediately, I just thought, “WOW & you’re a doctor? Did you hear what you just said? You just basically said, we have no idea what’s wrong with you but we want to do an extremely invasive test to figure it out, knowingly subjecting you to infection.” After they said this, I immediately looked at my mom in terror, because to me “a mass” meant tumor. Now at that time, I still wanted to major in pre-med. So I was very aware of what goes on with the human body, & I thought if it was a tumor they wouldn’t be able to “drain it out”, so that begs the question again what is it? My mom said, “You guys aren’t touching her until I talk to her doctors down at University of Chicago. The doctors just looked at my mom helplessly & then at me, as if they were saying, “OK, but you better hurry, look at her.” I was lying there in a fetal position, holding my breath because it hurt to breathe, until I couldn't hold it anymore then letting my breath out & tears filling my face from the pain I was going through.

Finally my mom convinced the doctors at Evanston after a very chilling “Get her to U of C, the doctors there don’t know how to care for her” from my doctor’s nurse, Kelly, who she had called in a frenzy just wanting to hear from someone at U of C. I was placed on a stretcher & we got in the ambulance. I remember thinking, “I've always wondered what it would be like to ride in an ambulance, but this is not exactly what I had in mind”. I closed my eyes, but I remained awake from the pain, even after the max dose of morphine they had just given me for the ride. I heard the EMT’s talking to each other, I could hear my mom sitting in the front, periodically asking questions about me. It took forever to get to U of C. At least that’s what it felt like. When I got there, it felt like ok we’re here, now I’m going to be ok.  But we were so wrong.  We got there, & they had been thinking that I had a shunt infection, but I didn’t have the two main features of any kind of infection which were an elevated white count &/or a fever.  I will never forget the fellow’s words after hearing about my nonexistent blood counts, “Well we will admit her & just watch her, because if it is an infection, it will very quickly make itself known with no antibiotics; & that’s exactly what happened; four days later, screaming in pain, with a fever of 104 white count off the charts, I was rushed to the OR. My shunt was removed & an external drain was put in. My parents were told to get comfy, I would be spending the next 3-4 weeks in the PICU, but they chose not to tell me that, because it included Christmas & our family trip to Disneyworld.

When I was in the PICU, I was essentially bedridden, because in order to get out of bed I needed to turn the drain off, lower or raise it, unplug Beatrice, my IV pole (I named her, when you’re in PICU doing nothing all day, you get bored) & then get up & bring Beatrice with me, but not walk too quickly because the drain would pull because it was held into my head by stitches. After I had walked enough I would need to go back to my room, plug Beatrice back in, lower the drain & turn it back on, so sometimes I just wanted to stay in bed, because getting up was very labor intensive.  I was on toxic antibiotics that burned through my veins. I remember every time they came in to hang my antibiotics, I would look at my arm, as if I were saying goodbye to that IV because I knew by the time antibiotics were over, my IV would be toast. My mom begged for a PICC line, but they were worried about possible infection with the PICC, & it adding to the deadly, rapidly growing staph infection I already had. So I also had to endure 5-6 IV pokes daily, sometimes 2-3 times daily.

So Christmas came & went in the hospital. My parents brought my American Girl doll Christmas tree, put a Santa hat on Beatrice, tried to make it seem normal, but I knew in the pit of my stomach, nothing about a hospital Christmas was normal. Every night I said prayers before I went to sleep, praying for God to please wake me up from this horrible nightmare, but I also wanted to pray for all the kids who were sicker than I was that shared the PICU floor with me. Most of them, not even conscious. I was so sick, & yet so so healthy compared to the rest of the kids, & so grateful for it.

About a week after New Year’s, my parents were told that my cultures that they had been collecting, were coming back clear & that my counts were going down. I could finally have surgery to have my shunt internalized again. Yay right? Wrong. My parents were told at that surgery two months before, that my ventricles had collapsed on themselves, (SVS) & therefor, they would need to make my ventricles huge before surgery to make sure the shunt was going to fit. What does that mean? It means setting the drain to an impossibly high number so that it won’t drain until the pressure inside my skull reaches that high of a number. My parents also learned that day that I was an add on in the surgery schedule, which means I could be going through this all day but they weren’t given a choice so they had to do it. I spent the next 8 hours in horrendously agonizing pain, throwing up, eyes crossing, feeling so dizzy, crying &  moving just in time to throw up for the hundredth time sometimes in the bucket; sometimes not. Then I was given a drug to calm me down, because my heart rate & respirations were going ballistic, because of how freaked I was. That’s the last thing I remember, before I woke up from surgery later that day.  I was fine, & I recovered in the hospital for the next 2 week, was given a few more antibiotics to make sure everything was OK, then I was allowed home to try & resume my life.

I remember after I came home, that’s when it really became clear to me that tomorrow isn’t promised to a single one of us. I promised myself & God that I would start appreciating life & everything in it. This was when I really started embodying that ever popular quote by the famous Marilyn Monroe “I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you can appreciate them when they're right, you believe less so you can eventually learn to trust no one but yourself, & sometimes good things fall apart so better things can fall together." This is the promise I made to myself, I can’t change the way I was yesterday, because it has already passed, but I can change the way I’m going to act tomorrow. Sometimes things do fall apart so other things can fall into place. This is not a mistake; it’s called fate. The past is going to turn me into a better person. No matter how upset I am about the way things turned out, I will eventually look back on this & say, “Wow, I don’t know where I would be in my life without this, & I can honestly say I’m there now, & my view is absolutely wonderful.

What are you thankful for this year?

It’s during the holidays that we realize and contemplate what we are thankful for. But that made me think of something, shouldn't we always be thankful for something no matter what day it is? We are so blessed to live in a free country and to have food on our tables every night. That’s a given. But what I’m thankful for this year, stems from something else entirely. I’m thankful that I have hydrocephalus but also that I’m still here to reap the benefits that it has shown me do exist. I’m thankful for the journey hydrocephalus has allowed me to walk, for I don’t know where I would be in my life without it. I know I wouldn't be as compassionate or as thankful for everything I have, because I know what it’s like to not have it. I said this in my last post but it’s really true- if I could sum up hydrocephalus in one word it would be thankful. Because however painful the condition is and however many surgeries I will have had by the end of my life, I know that I wouldn't be who I am without them, Hydrocephalus took some of the most crucial years in terms of "finding yourself" away from me and molded me and shaped me into the person I am today. But we cannot ignore the truth; Yes the facts are the facts: I've gone through a lot. Some doctors say I shouldn't be standing here today. But I am, and so I feel that it’s my job to live out the meaning of what it is to be truly thankful because I know what it’s like to not be able to walk, or talk or to spend holidays with loved ones at home. It has all been the most humbling experience I've ever gone through in my entire life. I’m not trying to say, I was a spoiled kid who got whatever she wanted, but I’ll be honest. I never really knew what it was like to “truly struggle” until I got sick. And this allowed me to walk in those shoes. But it’s almost as if I said as I was getting better and returning to normal life, “Yes this is hard, but when I do get through it, I end up a more mature, smarter, version of myself, so maybe I won’t take these shoes off. Although things have not gone the way I wanted, I can’t say I could go back I would change them, if I could.

So this holiday season as we celebrate the true meaning of Thanksgiving and the birth of the blessed Jesus Christ, I challenge you, my readers to notice the things you wouldn't and to be ever so thankful for them. Something as simple as noticing how your arm falls after you’re done scratching an itch, or how you can run to hug your loved ones as they all pile into your house for the holiday meal. I might get down that I have hydrocephalus more than I would like to admit and I know I take this back every time I have to have another surgery, but honestly, I wouldn't change it, the things that it has taught me have given me immeasurable courage and grace. I remember when I was in the hospital this past time, I was so sick, and we couldn't figure out why, and  I actually told my mom that I wanted to die. And then just like that, I had a whisper in my ear, and that whisper said, “It’s not your time Kimi. I will help you through this, I promise you are not alone”. I think it was my guardian angel. And she fulfilled her promise.  She didn't take my pain away because she knew that it was meant for greater things such as teaching me, but she made sure I didn't go through it alone. And I can’t explain the feelings I had after that night. Even though I couldn't see her, I know that my angel was in my room all month. She was there watching me while I had to get my incision sewn up in my room with no medicine, she was in the neurology team that was watching over me in ICU where I was having seizures, and she was there in my surgeons’ hands when I needed the second surgery, and she was there with me on the second to last night I was there, when I crumbled into a pile of tears when my parents left the room. She was there every step of the way, and even though she couldn't stop bad things from happening, she was there to make sure that I was ultimately OK. 

 I think there's a lot to be said about the fact that I never figure these things out until after they happen. I think this is because my soul knows that this is going to make me a better person, and I said a long time ago, I don't care what I need to go through during this lifetime with hydrocephalus just as long as it turns me into a better person; because no one's perfect. There's always room for improvement, and I think this is mine. This is what I am thankful for this Thanksgiving. I’m thankful that I am here and healthy, I’m thankful for every sleepless night I had at U of C that had me up and awake contemplating everything because those nights are what brought me here, and made me not hate hydro, but be thankful for it, and I am thankful for my guardian angel. She’s awesome!

So to sum it up, I’m just thankful……..for everything I have and everything I will have tangible or not. 

CCD and I don't mean the Religion Class Sept16-Oct 17

A lot of people have been asking me about my most recent hospitalization. And quite honestly it’s a looooooooong story. So I thought, what better way to tell it then on my blog that I just started so then its there forever! So here we go. Buckle your seat belts ladies & gentlemen, apparently it's gonna be a wild ride no matter if I remember it or not!

This was it. I had waited 3 months for this moment to arrive. September 16. Was I scared? Maybe, but I would never let myself admit it. My parents had woken me up at 5:00. I needed to be at the hospital at 6:00. I stayed in my pj's & half-asleep just got in the car. When I got there, I was told to go to the 4th floor. When I got to the 4th floor, I thought to myself, "This doesn't look like pre-op. It looks like a hotel lobby. Then my parents & I were given a pager, & were told, when it went off someone would "escort" us to pre-op. I thought, "Ok, this is kinda weird, but I'll go with it.” About 15 minutes later, our pager went off & a young man with a red vest on came up to us & said, "OK. Let's go to Pre-op." We got to the 5th floor & checked in with another set of people. But this time I got to go straight into a "holding room”. The nurse came into my room & said, "Let me see where we are at." I said ok & she left. It seemed like forever until she came back & said, "Unfortunately they're delayed." My mom asked how long. She said, "Well they had a trauma in the middle of the night & they're just finishing up the surgery & then they have to clean the room, so I'm guessing an hour & a half maybe?" Greeeat just great. Although I had already been waiting 3 months for this. I guess an hour & a half wouldn't make a difference. My mom said, "Oh if they're cleaning the room, tell them to take as long as they want. We don't want her getting an infection." To that I responded, "I don't want an infection either but speak for yourself! I don't want to be waiting here forever!" 

Well to fast forward a little bit, I went back at about 9:30, & according to my mom they didn't start the surgery until about 10:30-10:45. So I don't know if they put me to sleep then went & got breakfast lol or what but my mom said when they were finally called to the recovery room, I said I was in a lot of pain. She asked Dr. Frim when he came out to talk to them, what my new shunt was set at, & he said it was set at 3. So technically it was set at the same place my other one was set at.  There were no beds, so I stayed in post op until probably early that evening; it was a loooong time. The next thing I remember, was that night not being able to get up without excruciating pain, which I thought was low pressure pain. And so I believe the resident turned me up to four. In the middle of the night, I was awakened by pain and then noticed I was dry heaving. But my mom was sleeping. I didn't really have time to do anything except look to my right & throw up. Needless to say this woke my mom up. The nurse was called, we had a little freak out session, chalked it up to anesthesia wearing off & tried to get back to sleep.

About 5 days later when the residents rounded & I said, I think my pressure is still low, & so they turned me up to the next setting, which was as high as this shunt could go. By that night I was in terrible shape. My stitches from the incision, which now they're saying wasn't sewn up properly in the first place, had burst. So I was leaking fluid everywhere. My mom had the nurse page the resident & get him up to my room immediately. By this time, I had lost both of the IV's that they had put in during surgery a few days earlier, & they had given up trying, after multiple nurses had been trying for hours. So this made the resident's job a little difficult. How are we going to give her the meds to basically forget this ever happened, we can’t give her a shot in her head to numb the area that would just be subjecting her body to more infection. Well an IM shot of course. I can’t really tell you why, but I had an out of body experience. I could see myself lying on my side, crying with my mom sitting right in front of me & I could see the resident working feverishly to sew up my head as quickly as possible. And I heard him say, "Oh she's not crying because this hurts, she's crying because of the huge dose of Ativan I just gave her. Which my mom confirmed he did say. Maybe it was the huge dose of Ativan, but I will never know. When he was done, I assume I passed out.

Honestly I don't know what happened on the in between days of having this happen & going to ICU. My mom said there was at least one day in between. But I woke up in the ICU.  With a drain coming out of my head. I looked around & immediately felt scared out of my mind, because I had no idea where I was, what time it was, or if anyone was with me, but what scared me the most was I could tell time had passed and I couldn't tell you anything about the time. I looked around & saw my mom. I said, “Where am I”? She told me I was in the ICU. When I was in ICU I was on complete bedrest, because I had the drain in. & for a lot of it, I had to lie completely flat; which anyone who knows me knows I cannot lie perfectly flat, for any extended period of time. So that was fun…….. But later that week they confirmed that the surgery they just did was a failure & that I would be going to surgery sometime in the next few days. They took out the drain because you can only keep Huber needles in for so long, & then I started leaking through my incisions again! They got it under control but I was still leaking so they wrapped it super tight with gauze. During my stay in ICU (8 days), I got blood draws three times daily, 2 shots a day in my stomach and two shots a day in my hip bone. So I was SORE. It was absolutely impossible to get up and do anything. But I couldn't get up anyway. But because it's me and Murphy's law runs my life when I can't get up I want to, so I was so restless, which was painful because I would want to move but at the same time be in so much pain from the shots and blood draws I felt like I couldn't. 

On surgery day, my nurse Rahel came in the room & said they just called her & said I was next & needed to be in pre-op asap! So she took my bed to pre-op, which was so nice. Honestly in the 10 years I’ve been in the hospital, I don’t think I've ever had MY nurse bring me to preop. I’ve just had the transport people do it. That really made me feel good. She knew I was really upset & she had been my nurse for days before & I had developed a great relationship with her, so it meant a lot to me that she was able to be there especially since my parents weren't there yet. She said, (I will never forget it,) when we got to pre-op, “I probably won’t see you when you get out but I’ll see you tomorrow, ok? I promise.” So I had surgery again. I remember the first thing I thought when I woke up from surgery was, “I’m alive. I’m still here &I’m so happy." Pain is temporary, but lessons last a lifetime. I kept saying this thought to myself during the remainder of my hospitalization, because it's really true. I was just so happy to be alive.  I went back to ICU later that evening. A few days later, I started getting terrible neck spasms. So bad, they had me in a ball crying. I remember leaving Neuro ICU & Rahel asking me to smile for her because I was well enough to leave N-ICU how great is that? I couldn't force myself to do it because I was in so much pain. I said, "can I owe you one?"  She said, “Sure. I’m sorry honey.” I said what I always say to the nurses, “It’s not your fault.”

A few days later, a doctor who I didn't know was outside my room reading my chart. I looked at my mom & asked who that was, she said she didn't know but we would find out in a minute because it looks like he’s coming in. He said his name was Dr. David from INFECTIOUS DISEASE. My mom & I looked at each other & I immediately went under the covers.  I knew what he was about to say, &I didn't want to hear it. He said that they cultured my shunt that they took out &it was positive for staph-eppi. My mom said how?! I was on antibiotics for days. He said he wasn't sure, but they wanted to start me on Vancomycin q6 5,000mL for two weeks. I was completely blindsided by this news. I felt so defeated. Nothing during this hospitalization had gone right & now this? The next 17 days were long & painful; having to get blood drawn twice a day to see what my vanco levels were, getting insanely painful shots in my stomach twice a day, which took a while because they were blood thinners and so they make you bruise and nurses would just look at my stomach and sigh because there was no where to give me the shots because my entire stomach was purple & trying to get up & walk around the floor to make the doctors happy, but then absolutely passing out when I got back to my room after only going around the floor once. But I can honestly say now, because I would never say it while this was going on, I am stronger because I went through this. No matter how hard it was for me to go through, or how hard it was for my mom to watch, I am now a stronger version of Kimi-in a small compact package. I can’t say I would do it again, but I know I may have to. This story is only one of the hundreds of stories I've acquired over the past 10 years. These stories need to stop, & they can’t stop without your help. So please help me make Hydro History! Xoxo kimi