I’m not quite sure what to call this.

Hi everyone,

Things have been…… interesting. I’ll go in chronological order.

Remember my last post about the blood clot and going to the emergency room? Well I was told to go again on the next day because the Xarelto was causing GI bleeding and I was admitted for the week. Yep. I spent Christmas on the surgical floor of the hospital. To be honest, it was actually pretty nice. My family came up to my hospital room with baskets full of presents and I just hung out in bed all day and had a few visitors later in the day.

This was probably one of my most frustrating hospital stays and I haven’t been poked by so many needles since my first stay in the hospital nearly 4 years ago. They were checking two different blood levels, one every 6 hours and the other every 4 hours. By this point, I also had two IVs and no one would draw blood from either of them. I understand that the phlebotomists couldn’t touch my IV but the nurses wouldn’t either. I’m not even sure why I had a second IV to begin with. I had a working one in my left arm and when they came in to start a second one, I began to protest. The first two tries for my 2nd IV failed ( – one of which was in a vein by my bicep. I fought so hard to not have them stick me there and they pretty much told me I didn’t have a choice and that they had to try. It was miserable.) When they finally got my 2nd IV started, the nurse basically had to yell at me to get my attention to tell me that the IV was good because I was so upset about the others.

Not a great time.

From the 20th to the 21st (the day I was admitted), my hemoglobin had gone down a few points which was pretty substantial. It was also extremely frustrating because my doctors have worked so hard to get my blood levels to where they should be. They had me stop taking the Xarelto and put me on Lovenox which is an injection I have to do every 12 hours.

Right now, I am pretty skeptical of this whole blood clot thing. I know I have one in my left common ileac vein (which I think would classify this as deep vein thrombosis?) but no one has checked to see if I have any others. All we know is that it hasn’t reached my chest. I don’t know how all of this works either. They keep talking about it breaking loose and that the goal is to make it disappear with blood thinners and not to break it loose. I am afraid to move around too much for fear that I will cause it to move and when I start to feel funny in any way, I smile to make sure there isn’t a blood clot in my brain and that I’m not having a stroke. My poor boyfriend is scared something is going to happen to me and just in case, he knows how to administer my injections.

I’m not big on needles. I have been getting over it since I have to inject myself twice a day but now my concern is the bruises. My legs are covered in bruises from these injections. Everyone keeps telling me to do them in my stomach but because of my laparotomy, the nerves are wonky. It hurts more than it should just to pinch an area to inject – therefore, I just do my legs. I had to perfect this before I could leave the hospital and I ended up leaving that Friday – which worked out perfectly because my trip to Las Vegas was on Monday.

On December 29th, my 21st birthday, my boyfriend and I drove to the airport for the night flight to Las Vegas! I have been once before but Dave had never been and we had an absolute blast! I can now order drinks and gamble a little so of course, I drank root beer and played penny slots. I had a couple alcoholic drinks with Bacardi mango fusion and learned that I actually like rum! On the last day, Dave and I had time to kill between checking out of the resort and the shuttle picking us up for the airport so I sat down at a slot machine. The day before, I lost $15 in less than 5 minutes and although I was laughing so hard, I learned that slots aren’t for me. But I was bored and this was a penny slot so I figured ‘what the hell’ and put in a few dollars. After $3 I had a chance to win a jackpot! It was a complicated process on the Dungeons  & Dragons slot but in the end, I won just over $105! It was definitely a nice way to end our trip.

We were able to do quite a bit while we were in Vegas! We rode on the High Roller ferris wheel (which was 550ft high – 150ft taller than the London Eye) at The Linq and we took some beautiful pictures. We were fortunate enough to know someone that works for Criss Angel so we were able to see his show at Luxor which was nothing short of amazing. We spent New Year’s Eve at Club XS at Encore with Zedd as the DJ for the night. All around, it was a really awesome trip and I can’t wait to go back.

* * * * *

On a more somber note, my grandfather passed away on my birthday. When I was in the hospital, we found out he was in a hospital across town. He had prostate cancer for nearly 3 years and was originally given 3-6 months to live. After I was able to leave the hospital, we made a couple trips up to his hospital to visit him. He was doing alright the first week but a few days after Christmas, his state deteriorated tremendously. When I first walked in to see him on the 27th, nothing prepared me for how he looked. He was struggling to breathe and was in and out of consciousness although when he was fully awake, he knew what was going on and knew who we were.

After the initial shock, we could all sort of calm down and enjoy the company of each other. What made the visit difficult was when his kids each came in to see him. My dad was one of 4 children and we got there, one of my uncles had been crying. We were the second group to get there to visit him and it was unbelievably difficult to watch my other uncle and my aunt react to seeing their father. Both of them sobbed as they held his hand which in turn made us all start to cry again. On the bright side, my grandfather was not in any pain. He was able to communicate that to us as our goal at this point was not to fight the disease and its complications but to keep him comfortable.

On the 28th, we went to visit him again and although he was still in and out of consciousness, his breathing wasn’t quite as strained. I sat by his bedside and held his hand and I’m so glad I was able to do that. As more family started to come in, I moved to the foot of the bed. In a bout of consciousness, my grandfather picked up his head and looked around the room. He saw me at the foot of his bed and when I smiled at him, he managed to grin back at me before falling asleep again. I will always remember that.

Later that night (about 1:30am on the 29th), I was still awake downstairs at home. My dad woke up to a phone call from my aunt. He got out of bed and gave me a hug and told me that my grandpa had died. I’m thankful that my grandmother was able to be by his side and that his passing was peaceful and free of pain.

The funeral service was a celebration service and it was beautiful. Of course, I cried through the whole thing and what started it was my grandmother saying her goodbye at the end of the visitation before the service started. However, when I was walking into the sanctuary with my family, they were talking about some of the things in his casket. There was a toy tractor and a pair of coveralls in it as he was a dedicated farmer but among the funniest things were two flashlights and a cell phone. His biggest fear was being buried and not really being dead. There was a flashlight with a red blinking light in the casket so he could find it and another flashlight as a backup when the other one stopped working. The cell phone was put in so he could call my grandmother if he woke up. I could not help but laugh while I cried as I walked into the sanctuary.

At the actual burial site, he was given a 21 gun salute and my grandmother was presented with an American flag. It was beautiful tribute to my grandfather’s time serving our country.

Now, it’s just a matter of life getting back to normal. My brother was the closest to my grandfather of all of the grandchildren so this is going to be a hard adjustment for him along with the rest of my family. All you can do is keep pushing forward.

If you have a few seconds, please send good thoughts or say a prayer for my family. Things have been rough lately and we could all use a break. ♥

* * * * *

On a more goofy note, the snow here is crazy and my dog has never seen it before. He absolutely loves it!

Good night guys!

Liesl

Fear.

“You’re so brave!” is something I get told every-so-often. It’s a sweet thing for someone to say but I’m never quite sure how to take it. Obviously I say thank you or something along those lines, but here’s the thing:

I am not brave.

I’m no braver than anyone else with my condition or any other condition for that matter. The difference is the ability to adapt to the situation you’ve been given. When I think of bravery, I think of someone going to battle or fighting for what they believe in. Those people are brave. They are choosing to fight.

If I had a choice, I would NOT be on this crazy train. I don’t feel brave and I have no control over what happens to me. I feel like I’ve adapted to my situation and I’ve gotten used to how this whole process works, but it doesn’t make me brave. It’s made me a realist. It has matured me, introduced me to some amazing people, shown me pain and taught me empathy, but it has not made me brave. If anything, I am fearful.

When I start to feel sick or in pain, I feel crazy. I look normal on the outside and sometimes I wonder if it isn’t the depression making me feel like I don’t have the energy to get out of bed. Could I just be making up the pain? I feel like a bad person and I feel like I am taking advantage of the fact that I am labeled “disabled.” As soon as I say something about how I’m feeling, the testing starts back up again and to my relief (and sometimes surprise), something actually is physically wrong with me.

It makes me feel human and it starts to give me hope. I know that sounds very backwards but this disease is 10% physical and 90% mental. I can deal with physical pain, it’s the depression and anxiety that get to me and it’s much harder to deal with.

My iron is low? Get me some infusions. Anti-anxiety meds not doing the trick? Let’s get a new script. Dehydrated? Go to the ER and get some fluids. These sorts of problems have fairly quick fixes.

However, my current problem is anything but by the book. I’m having ongoing bleeding and pain and even with the scope of my J-pouch and the EGD, there isn’t a visible problem and the biopsies came back normal. So, my doctor set me up with a capsule endoscopy. Basically, you swallow a camera the size of a capsule pill and you wear many electrodes to power the camera. It takes 2 pictures every second so there were nearly 50,000 photos. The software turns it into a sort of 3D video. Hopefully this shows something because at this point, I’m at a loss and so is everyone else. My GI doctor even set up a time with another pathologist to look at the biopsies himself to double check and make sure that nothing was missed.

There IS inflammation going on. My fecal calprotectin level is 404. The normal range is under 50. I don’t even have my large intestine – the organ affected most by ulcerative colitis – and the levels are the highest they’ve been since I first got sick nearly four years ago.

((My iron is another factor too. In my last post, I mentioned how I was worse than when I started. Since then, they gave me a dose of 200mg IV iron instead of just 100mg. I got tested the other day and my iron saturation is up to 10% but that is still pretty low. I’m losing it somehow and it has to be through losing blood in my stool. Nevertheless, 10% is an improvement and I’ll take it. The plan now is to do 200mg of IV iron once a month and get my blood checked two weeks after each infusion to see where I’m at.))

Either way, I think I may end up on some larger medications than I want to. 6MP is the big contender right now but it’s an immuno-suppressant and the tests done to show my immune function showed that nothing autoimmune-wise is going on. So would an immuno-suppressant even help?

The other idea is biologics. Medicines like Remicade. I had surgery shortly after my diagnosis because of the severity of my disease and also because after only 2 months, I had had enough of the disease. I wanted to avoid medications and the possibility of cancer later in life because the longer you have your intestine, the higher your chances are of getting colon cancer.

These drugs scare the sh*t out of me. There is a long list of side effects that you can scroll through when looking at the medicine online. They range from hair loss and skin irritations to lymphoma and infertility.

I do NOT want to lose my hair again; I went through that once and it was miserable to slowly watch all of my hair break off and fall out to the point that I started wearing extensions. When those started to show through my extremely thin hair, I looked for wigs. My mom took me to a wig shop and when the sales lady put one on me, I started to bawl. It didn’t look like me and I didn’t feel like myself. Looking in the mirror and seeing someone you don’t recognize is an impossible reality to face.

I know it’s cosmetic and my hair should be the least of my worries but, especially in high school, my hair is what I was known for. I had gorgeous long, brown, curly hair and it was gone in less than a month of being on steroids. It isn’t something I want to mess with now that my hair is finally starting to come back normally.

Another huge thing for me is my ability to have children. I do NOT want to mess with my fertility. There is already a sort of unknown when it comes to my fertility anyway. Studies have shown that the J-pouch surgery I had can make it very difficult to get pregnant.

Study 1
Study 2

I want to have kids someday and I want to be able to carry the child myself. I understand that this may already be difficult and I don’t want to take a medication that would further inhibit my ability to get pregnant one day.

Long story short: Nothing positive is going to come out of my appointment with my GI doctor today. Hopefully they find the problem so we can start fixing it. If the problem isn’t found, there will most likely be more testing which takes me away from school even more.

I am by no means brave. I am a realistically cautious optimist. I don’t need good news or bad news. I just need news.

It’s time I move on with my life instead of being stuck tied up with disability resources on campus or dropping classes because I can’t handle the hours.

I need my life back. Hopefully some of that will happen today.

If you can, please send good thoughts this way today. I am nervous and scared and I’m not sure what is going to happen.

Thanks everyone ♥

Liesl

 

 

 

There’s a first time for everything.

Hey everyone! I know I promised an update on my health and the goal was to send out one sooner than, well, right now. But, as always, there were a couple speed bumps.

On the 24th, I had a chat with my surgeon. Coincidentally, my cousin works in his office so after a few text messages, I had an appointment set up for later that day. I’ve been bleeding. Every time I went to the bathroom, there was blood. I had a vein cauterized and a few more stitches put in on the 18th and the bleeding had stopped. However, it picked right back up. We talked for a few minutes before he decided to schedule me for another exam under anesthesia.

This exam was scheduled on the next day (the 25th) and he cauterized just about everything.

After this procedure, I felt so much better. I wasn’t on any pain medication and there wasn’t any bleeding – that is, until Monday.

Monday was already an off day just because I had traffic court for a speeding ticket I got a while back. I stood there waiting for over an hour to be called and during that time, I had to go to the bathroom. This time, there was blood – not a ton, but enough to be a little concerned. I felt alright so I tried not to think about it too much.

After spending over an hour at the courthouse, I decided I would go to Kohl’s and use a gift card that’s been burning a hole in my pocket. I wandered the store for about an hour and by the end of my shopping trip, I was starting to get insanely painful cramps in my j-pouch. I paid for my clothes and then headed straight back to the bathroom. When I sat down, I saw blood. My period was supposed to be happening in the next couple days so I figured it was that until I actually went to the bathroom. No stool, all blood and clots of blood.

This scared the shit out of me (figuratively and literally). I immediately called my cousin and asked her about it. She told me not to panic and that the water can make the blood look worse than it is. I talked to my mom too and she just told me to come home and we’ll keep an eye on it. I was only five minutes out of the parking lot before the cramps came back even worse than before.

I hurriedly parked my car in front of the garage and ran inside to the bathroom. Even more blood. I called my mom into the bathroom with me and it was all I could do to suppress the vomiting that came with seeing so much blood. I had never seen this much blood before. My mom could see me start to panic and as soon as she told me to stay calm, I started to cry. What the hell is going on???

In the next ten minutes, we were on our way to the hospital. I sent a text to my boyfriend, Dave, to let him know I was headed to the hospital and soon he was headed there too.

My vital signs weren’t too alarming in triage but they got me a room fairly quickly. My nurse started an IV and the first time I went to the bathroom, they had me use a toilet hat. There was 10oz of blood. I walked back to my room and my mom and Dave were sitting there. I started to panic because I was losing so much blood and I didn’t know what would be done to fix it. My tears only panicked Dave even further. (We have been dating for a month and obviously, this isn’t something that most people are used to. Bless his heart – he’s been taking it in stride. This is the third time he’s been at the hospital with me.) A couple hours in, there wasn’t too much excitement and I knew I would most likely be admitted so I let him go home.

After having a bolus and already having bothered my nurse a few times for miscellaneous things, I decided I would just get up and go to the bathroom. I was locked off from my IV and I unhooked myself from the leads that were stuck to my chest. I went to the bathroom and there were a ton of blood clots followed my another round of blood that seemed to pour from my body. I stood up, washed my hands, and as I opened the door, the nurses at the desk saw me. “How are you doing?” they asked. As soon as I opened my mouth, I could feel it. My vision was going black and my hearing was starting to fade. “Actually, I feel like I might pass out,” was all I said before they jumped up from where they were sitting. By this point, my vision was mostly gone but I could feel them carrying/dragging me to my room.

I’m so glad my boyfriend had left by this point so he didn’t have to see them carry me to my bed, nurses all around me, hooking me up to various machines, and oxygen on my face. My mom said she felt like a bad mother because she was almost laughing. By the time I was lying in my bed with my feet higher than my head, I was laughing too. It was fairly comical although it would probably look fairly traumatic to someone else. I also earned a bright yellow “FALL RISK” bracelet. I wasn’t allowed to get up without a nurse anymore.

In the meantime, I was texting my surgeon. He gave me his cell phone number earlier that day once he learned I was bleeding. He told me he was okay with me going home and just keeping him updated on how I was doing but I felt better staying at the hospital. I was admitted that night.

Blood draws were ordered every six hours to keep tabs on my hemoglobin and hematocrit levels. Overnight, my hemoglobin went from 11.9 to 7.8. On Tuesday morning, I was signing consent forms for a transfusion. Four actually. But it takes a while to infuse a unit of blood so they only had two out for me at the moment. After those two, they would check my levels again to determine if I needed more blood.

This was a first for me. I had never had a transfusion even when I was originally sick in the hospital with my large intestine. I was a bit nervous, but everything went totally fine.

During the second transfusion, Dave came up to see me. I’m really glad he isn’t squeamish because there was a bag of blood hanging on my IV pole. He’s always very nervous about hurting me since my surgeries and coming into the room with me in a hospital bed and an IV line full of blood in my arm didn’t really ease his worries. After a bit of convincing Dave that he wasn’t going to hurt me, I got him to sit on my hospital bed with me. He read a chapter of his book while I watched an episode of Breaking Bad on Netflix. He was super sweet and stayed with me for about four hours.

I’m one lucky girl. 

(My hemoglobin level was 10 shortly after my second transfusion and several hours later it was at 9.5.)

I spent that night in the hospital also. I was woken up at 4am for a blood draw and the nurse told me around 7am that my level was 9.6. It was pretty stable so when the resident came in that morning, he talked about discharging me from the hospital.

More than anything, I was trying to understand what happened. None of the doctors outside of the emergency room seemed to be taking me seriously.

“Well what probably happened is that the first blood test was falsely high,” he started. “Your hemoglobin was most likely around 9 instead of being 11.9.”

This confused me. Why would my levels have been falsely high? It’s not crazy to believe my levels were healthy to begin with considering I hadn’t really been bleeding until the day they drew my blood in the first place. I said something about this to him and he blamed dehydration – which I wasn’t really dehydrated if he had looked at any of my vital signs or test results from when I came into the ER.

I really wasn’t trying to be an asshole by questioning him, but I wanted to understand what was going on and the resident wasn’t making a lot of sense. Not to mention, my hemoglobin had been checked a few times last week already and it was always around 11. He just insisted that it’s unlikely that my levels would have dropped four points overnight.

“I’m sorry, I just don’t understand why it would be wrong. I lost a lot of blood. It’s not unreasonable that my levels dropped the way they did.”

His response? “There is really no point in arguing about this. Do you have any other questions?”

From that point, I was done. I didn’t have any other questions; I just wanted his arrogant ass out of my room.

He hadn’t been there the entire time I had been in the hospital. He never showed up until that morning. He didn’t see how much blood I lost. He didn’t care to look at any of my vital signs. He didn’t care about what I had to say even though he knows my history and even though he knows that I know my own body. He is one of those that has a God complex: i.e. He is the doctor and there is no point in arguing with him because he knows all.

After he left, I immediately burst into tears out of frustration. I have actually seen this guy before and he tried discharging me too soon after a surgery I had in 2012. He wanted me on oral pain medication and kept talking about sending me home even though he wouldn’t let me eat. Taking those medications on an empty stomach is a surefire way to make me sick – it always has been. But he didn’t care then and he obviously doesn’t seem to care much now.

I am not a doctor by any stretch of the means but I am not an idiot. I know my body and I am well aware of how most of this stuff works by now. When I go to the bathroom and, in one trip, there is 16oz of pure blood, that is a big deal. DO NOT downplay my situation. DO NOT come in and tell me that I “probably didn’t lose that much blood” when you don’t care to ask me about what happened or care to take any of my test results or vital signs into consideration. You do NOT know everything so get your head out of your ass and try listening to what your patients have to say about their own bodies.

Now that the hair on the back of my neck is standing up, I should probably call it a day.

Silver Linings Playbook started recording on the DVR a little bit ago so I am going to get my mind off of things by focusing less on Dr. God and more on Bradley Cooper.

Good night!

– Liesl

ps. I forgot to mention that a volunteer came in with a therapy dog yesterday! He was a standard poodle named Eli and he completely turned my day around.

My best friend also brought me Starbucks and stayed with me for a couple hours. I absolutely love her!

Sorry you received an email for this post. I mainly wrote it for me.

This is an extremely long post. I’m up to about 4000 words. If you choose not to read it, you aren’t hurting my feelings. I mainly wrote this for me. I remember so much of it vividly and I wanted to write it down before I forget it. However, if you’d like a little insight as to why I’ve been prescribed Wellbutrin, Viibryd, and Xanax, feel free to read…

This is only the beginning of a different life from what I had known. The beginning of many hard days to come. The beginning of my new normal.

My psychologist has helped me gain some perspective on my situation. I always have trouble wrapping my head around the fact that my life will NEVER be the same. That I will never be normal. Every time I think about it, I can’t help the tears from rolling down my face. But I will be okay. This will be normal for me. My new normal.

Sometimes Facebook seems to be more trouble than it’s worth but with the options of going through all of the posts by month and year, I tend to go back to when I first got sick. Mostly, I go through all of it when I need to have a good cry. It’s hard reading back through everything and seeing my happy morale slowly dwindle away… Nevertheless, I still find it interesting. I always seem to find new things when I read through it all…

The first day I started feeling kind of off was January 14th. Now I’m like every other kid. Every once in a while, we fake being sick to have a day off of school. It was snowy outside and I was tired. I just wanted to sleep. I went to the bathroom, and noticed that my stool was a little looser than usual but decided it didn’t mean anything. But of course I told my mom I had diarrhea so she’d let me stay home.

By the end of that night, It didn’t get better. And when the next morning came, it was actually worse.. I was happy to see my boyfriend after he had gotten off of work though. We just laid around and watched TV every night that week.

January 16, 2011
“Stuck in my house for 3 days and now my internet stops workin. I just wanna get outtt!!! Lol”

It seems so trivial to be worrying about the internet, but I was just tired of having diarrhea – real diarrhea.

On January 19th, I went to the bathroom and when I looked down, my heart started pounding and my eyes welled up with tears. I was bleeding. My mom took me to the doctor and by that time, the blood had slowed down. He recommended taking some Pepto Bismol and updating him if the blood came back. And sure enough, it did. I was going to the bathroom frequently and each time it was just blood. My mom wanted to take me to the hospital that night, but I wanted to wait until morning.

January 20, 2011
“I. Hate. Being. Sick.”

I wasn’t ready to leave for the hospital but I was losing more and more blood…

We left for OSF Saint Francis Medical Center around 10am on the 21st. I was immediately assigned a room in the ED and my vital signs showed that I was severely dehydrated. They took my blood pressure when I was laying on the bed and then asked me to stand for 30 seconds while they did it again. My vision went black and my hearing started to fade, but I had my mom and the ED nurse to hold on to so I wouldn’t hit the floor.

I was given two boluses of fluid in the ED and immediately started feeling better. Then of course the doctor comes in and if you go to the doctor for intestinal issues, it’s inevitable, you will be probed. They test for occult blood by sticking a finger in the anus and then putting the same finger on a certain sheet. If spots on the sheet turn blue, it means there is blood. I was admitted for observation and the doctors were pretty hopeful I’d be going home the next day.

January 21, 2011
“hangin out at st. francis. my tv has internet! :]”

By that point, I had been admitted through the ED to the new Children’s Hospital of Illinois. I was given a few more boluses and felt better than I had all week. I figured maybe a night or two I would be there – just until this bug passed and I could stay hydrated. I had lost seven pounds in the week that I was at home sick.

January 21, 2011
“date night: chillin in the hospital with clint. no ice skating.. no dinner…. no food period.lol…. fudge.”

We had a date all planned out a week ahead of time so I could go when I felt better. But of course, I ruined that. Luckily, Clint didn’t mind.

January 22, 2011
“praying i’ll be ok for winter retreat…”

Every year, the high school students of my church go on a winter retreat. That year, it was on the 29th. I had almost a week to get better so I could go.

January 23, 2011
“not sure what i would do without all my friends. ♥ your prayers and comments on my page mean the world to me ♥ i love you guys so much! ♥”

Everyone was so supportive. There wouldn’t be enough time in the world to repeat all of their posts on my Facebook wall. But after going through every message while I was admitted, there are easily more than 100 posts containing love and prayers.

The next day, I was prepped for a colonoscopy. I remember it vividly. They wheeled me down to a smaller procedure room and I waited with my mom and one of the nursing students. I remember crying while waiting for the colonoscopy. I was afraid of what it would show and I had never been under anesthesia through an IV.

I was soon diagnosed with Ulcerative Colitis. My entire large intestine was inflamed all the way through. My doctor couldn’t believe I wasn’t in pain.

January 26, 2011
“they took me off the IV! :] won’t be leavin until friday probably.. but at least things are startin to look better :] it could always be lots worse. your prayers and everything mean the world to me! thank you so much for all of the support. It’s just made my days here so much better ♥”

January 27, 2011
“gonna be here a few more days yet..”

January 29, 2011
“ahhhh the doctors ordered me a pass! now i can leave this floor and get some nachos haha :]”

This was the most important thing while I was at the hospital. They knew I wasn’t contagious so they let me wander all around the hospital campus. It helped me to keep some of my sanity instead of mindlessly walking laps around the floor. Although it was pretty funny when I’d wander to the gift shop pushing my IV pole around.

January 30, 2011
“I. HATE. Steroids. The end.”

Corticosteroids do some nasty things to your body. I had barely been on them for a week and I was gaining water weight, my appetite was never ending, and my room was always set at the lowest temperature possible because I’d have hot flashes all day.

January 31, 2011
“Can’t wait to sleep in my own bed ♥”

January 31, 2011
“is definitely getting spoiled here! There is this lady (she goes by “Cake” :] ), that brought be Trefzgers cookies… homemade egg rolls… and now she’s making me a vanilla milkshake! And one of my doctors offered to bake me a cake :]]]]”

February 1, 2011
“gonna be here a while..”

I think around this time, it started to kind of sink in that what I had was definitely serious. I had been diagnosed with ulcerative colitis on the 24th but I didn’t understand the gravity of it. I don’t think anyone knew how bad it was.

February 3, 2011
“just got a PICC line! No more being stuck! I can’t stop crying i’m so happy!!!”

This was an extremely rough day. The doctors wanted to run a CT scan but the IV I had wasn’t a large enough gauge. My nurse was very angry about having to start another IV on me because my arms were already covered in bruises from failed IV’s before. But she had to try. The first one failed. My veins rolled every time and then the second one failed too. By this point, I was having a panic attack. I had been stuck 14 times for IV’s since I’d been there. I wasn’t getting better. I was getting worse. Luckily, the crisis nurse called the PICC team and they put in my PICC line – a 32cm line that comes through a vein in your arm and ends right next to the heart. It can stay in for up to a year.

February 5, 2011
“mom is out to steal my hospital bed…. lol”

She had to sleep on the couch the whole time and was getting kind of uncomfortable. I tried to make her go home and sleep but she wouldn’t leave. She’s a good mom. :]

February 5, 2011
“Oh my word! I think my new medicines are working! I can’t stop crying i’m so happy! Let’s pray they keep working!”

When I say crying, I mean bawling. Hysterically. And laughing and smiling. It was the first time since the middle of January that I had gone to the bathroom and it wasn’t all blood and diarrhea. I had started mesalamine and a few days had passed. I just remember my brother sitting on the couch across the room and he didn’t know what to do. I had never felt like this in my entire life. I was immediately filled with so much joy and hope. I can honestly say it was one of the happiest moments of my entire life.

February 7, 2011
“my psych teacher sent an email to OSF.. just lettin me know i have an essay to write and a test to take. haven’t been in your class for almost a month.. i’ll be sure to get right on that. haha wow..”

My mom was on the phone with the principal trying to figure out a plan when a very nice volunteer named Wayne came into my room and said I had a letter. When I read it, I just rolled my eyes. I told him about it and he had the same reaction I did. My mom had just gotten off the phone and I read her my letter. “Well it doesn’t matter now because we dropped this semester.” Wayne smiled at me and said, “Well I’ll just take that back then.”

February 7, 2011
“Steroids have turned me into the cookie monster…”

February 8, 2011
“I may never fully understand why God has given me this disease.. but if anyone is going to have it, i’m glad it’s me and not someone else. I KNOW i am strong enough to get through this and in ways, it’s brought me even closer to God and the ones that i love ♥”

All I could think about was how happy I was that this was me and not my brother. I love that kid to death and it would break my heart to have to sit there and watch him go through something like this. He means the world to me and I’m sorry it got to these circumstances before we really were close. I love you Granto.

February 10, 2011
“praying the new medicines work.. hopefully the side effects won’t be too bad…”

Steroids didn’t work but I still had to be on them because my body got used to them. Mesalamine didn’t work. I was on antibiotics every day. I was going to be starting Prograf the next day and it was the last ditch effort to get me in remission.

February 10, 2011
“out of sheer frustration with people, i’m gonna be kinda blunt. MY MEDS AREN’T WORKING. PERIOD. i’m not saying this so you feel bad. i’m saying this because even after i say that it’s not working, people are telling me that i’ll be on medicine and it’ll be under control. that’s not how it’s working out.. taking a few more days to weigh all the options..”

I couldn’t deal with people telling me what to do about my health. This was the day I had a visitor, my uncle, that stood there and told my mom what to do about my disease. He’s not a doctor. Nothing close. He talked over me like I wasn’t there. My grandma came up from Florida to be with my family and while she was sitting there, I thought she was going to rip my uncle’s face off. Her voice kept getting louder and slower so maybe he’d understand. I just sat there in amazement as he made an ass of himself. He also felt that he was welcome to stay in the room when the pediatric surgeon came in to talk to me. Sure, medications work for people most of the time. But most of the time, only a part of their colon was inflamed. Mine was all the way to the ileum (end of my small intestine).

(Being I was on a pediatric floor, you have to have a badge to get to patient rooms. The badge opens the doors to the floor and your name has to be on the list for the person you’re seeing. It keeps kids from being abducted. You bet your ass that I took my uncle off of that list as soon as he left. I didn’t want to see his smug face for a long time.)

February 10, 2011
“sometimes, i question the higher authority… why would someone put such a beautiful sweet person through so much crap? i love u Liesl Marie Peters ♥”

This was written by my 15 year old (at the time) brother. When I read it, I bawled. And I know my friends cried too. Even now, I’m bawling.

February 11, 2011
“actually having a good morning! i feel good!”

February 11, 2011
“starting new meds today.. prograf. apparently, we’ll know if it works after 5 days.. 2/3 people respond to this so hopefully it’ll work out for me. last resort before surgery.. either way, something’s got to be done. PRAYING it works.”

February 12, 2011
“no ACT for me today..”

I was a bit upset about not being able to take my practice ACT before April with the rest of my classmates. By the time April would be here, I’d be out of school for four months. How was I supposed to do good on the ACT?

February 12, 2011
“haha granto you would pack my harmonica for me.. :] you crack me up”

My brother packed my laptop back and slipped my harmonica in there to cheer me up! What a sweetheart!

February 12, 2011
“dreaming about crazy bread from little caesars ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ this whole not eating thing isn’t working out for me.

My doctor came in to tell me his new strategy. He wanted my intestines to have a break. I couldn’t eat. I wasn’t allowed to drink either. The only thing I could do was have a sip of water to take all of my medications throughout the day. The kicker? It was for a week. I was also on TPN, a complex suspension created to sustain my body and give me the nutrients I needed, but no amount of nutrition in an IV takes away the hunger.

February 12, 2011
“checked skyward.. 45 missing assignments. I QUIT. lol”

February 13, 2011
“lost 8 pounds……… IN 24 HOURS. no joke. stupid tpn… I WANNA EAT DANG IT! at least they’re letting me chew gum..”

lotsa water weight from steroids + wonky scale = 8 pounds? My weight fluctuated a lot but there was noooo way I lost 8 pounds. Some days I was less swollen than others… But NOT 8 pounds worth.

February 14, 2011
“Happy Valentine’s Day!!! ♥”

I was a little disappointed that I couldn’t eat today either. Especially since they wanted me out of my room to do something. So I went to the activity room. The Make a Wish Foundation was there and of course we were decorating cookies. The whole room smelled like frosting. They offered me fruit punch and I couldn’t have it. They felt so bad! But by this point, I was used to it.

“I am the favorite patient :] haha”

“So everyone will stop asking Grant what is wrong with me, I have an inflammatory bowel disease called steroid refractory ulcerative colitis. Basically, my immune system is attacking my large intestine like it shouldn’t be there.”

I was pissed. Grant was in class and answering a question when in the middle of it, the teacher asks him how I was doing. The entire class started asking him questions and he had no idea what to do. My poor brother couldn’t even go to class without being bombarded by questions he didn’t know the answer to.

February 17, 2011
“I CAN EATTTT!!! just ate a cookie. it was heaven. ♥”

It was torture! A week before, I had been sent a HUGE box of cookies. And these weren’t just any cookies. There were chocolate fudge and white chocolate macadamia nut… I immediately had a chocolate fudge cookie and no sooner had I finished it, my doctor came in and told me I couldn’t eat for a week. At least I got to eat one of them.

February 19, 2011
“everyone here is sooo sweet! my nurse from the other day, Joann, told me that she would buy me pizza when i could eat. i thought she would have forgotten.. but she came in this morning asking when would be the best time for my meatlovers pizza from firehouse would be. she even remembered the kind of pizza after 3 days :] everyone here is has just been amazing… part of me is gonna be sad when i leave.. :/”

Sure enough, she came in around 5pm with my pizza. It was perfect!

February 20, 2011
“filled with wonder… awestruck wonder… at the mention of your name.. Jesus your name is power.. breath.. and living water.. such a marvelous mystery.. ♥”

I was tired of missing church and not being with my youth group.

February 21, 2011
“went outside for the first time in a month. it was amazing! didn’t even need a coat!!”

Being outside and getting fresh air was amazing. I felt like I could finally breathe again.

“hangin with my favorite person, Jackie Kuntz ♥”

I love this girl. She would come up to bring me Culver’s and she’d dance around my room all the time. It was a nice distraction. I’d complain about my face being fat from the steroids and she’d say, “You are beautiful! But you NEED to shave your legs!! That is just gross.” It was nice that someone still treated me normally. That day there were girls in the activity room that were painting everyone’s nails so Jackie and I went. It was a nice girls day.

February 22, 2011
“never thought i would say this, but i’m gettin reallllllly tired of this whole junk food diet… all i want right now, is a carrot. lol”

Everything I knew about fiber was totally wrong. Fiber was supposed to help you go to the bathroom… But now fiber is supposed to help make things bulkier? And I can’t have insoluble fiber because it will irritate my intestine. This meant no fresh fruit or vegetables. I was lucky if I was allowed some canned peaches. I was tired of mini corndogs and chicken nuggets. I just wanted a carrot!

February 24, 2011
“sick and tired of being sick and tired”

February 26, 2011
“going home today!!!! can’t wait to flop in my own bed! ♥”

This was surreal. I had all of my stuff packed up and was being wheeled to the parking garage. My mom got the car and I was wheeled out to it. As soon as she started driving, it felt like a rollercoaster. I hadn’t moved this fast in a long time. I also cried the entire way home. I could see my hospital room window from the interstate and as happy as I was to be going home, a part of me would miss all of the wonderful people I had met.

February 27, 2011
“Never did i think that sleeping in my own room would take getting used to..”

February 28, 2011
“Just so people stop asking, it’s gonna be a while before I can go to school or church or anywhere for that matter… My meds are knocking down my immune system down like crazy. It’s not necessarily that I’m too sick for school… YOU are too sick for me to go to school :] lol”

There are still so many things left unsaid through all of it. My youth pastor drove an hour with the senior girls so they could take me to the small restaurant downstairs for a milk shake. My neighbor/mom’s good friend came up to see me with her boyfriend; she was able to cut my hair in my room because the steroids had damaged it so much. I also was there on the first day therapy dogs were allowed on the floor. I befriended a twelve year old boy whose kidney had been shredded from a sledding accident and talked with his father almost every day. I even went to the gift shop in the main lobby with my IV pole. Unfortunately, my IV went KVO (keep vein open. it only runs at 5ml an hour) and beeped like crazy. Usually I would just press the silence button. But it was locked. In between IV antibiotics, my nurse would let me go for an hour or two at night so my boyfriend and I could kind of go on a date in the cafeteria. It was a nice little getaway and I loved roaming the hospital at 10pm with him!

Long story turned very short? The entire experience was humbling. If your output was measured and analyzed every day and everyone cheered when you pooped, you’d be humbled too.

– Liesl ♥