Post Hospital Stay Recap

So starting on the evening of July 22nd until the afternoon of July 27th, I was, once again, admitted into the hospital. It wasn’t an ordinary flare up. No signs of major inflammation showed in blood tests, CAT scans, urine tests, stool (fancy word for poop) samples, or even a colonoscopy. Compared to how everything was last year, things looked fine.

Except I was sick. Worse than sick. Miserable. I had been having fevers on and off for about a month, but it would pass within the day and I’d be fine for the next two or three days or so. Things got pretty rough when I was on a road trip with my boyfriend, but with the help of free hotel ice, I was able to power through. My boyfriend always made sure I had at least something in my stomach, even if it meant sacrificing nutrition for a manageable taste.

A Sonic ocean water and mozzarella sticks are obviously the dinner of champions. It’s funny though because the blue food coloring always gives me straight up blue poop.

But once I got home from the trip and was able to rest for a few days, I was fine. My appetite mostly came back. My fevers happened maybe once or twice a week. I made sure to rest.

Then on July 13th, I was talking to some friends about plans we have about putting together a video game over Skype. Just voice chat, so I didn’t even have to make myself look decent. As we brainstormed our way through the demo and I was caught up with what was going on, I felt myself slowly deflate. I started off the meeting sitting crisscross applesauce in bed, but ended up flat on my stomach by the end. I wanted to start writing right away, but I could barely acknowledge the English language anymore.

It’s basically how my friends would describe drunk Lauren, but this wasn’t as fun and it still involved throwing up.

This lasted for over a week. The fevers were low grade, so any time I mentioned it to my mom, she just told me to take some Tylenol and get over it. I was finally able to convince my mom to let me get a doctor’s appointment with my primary care doctor, thinking this illness was some sort of virus. I knew it had a lot of the symptoms a flare up had, but there was no blood in my poop, so…

But that Friday, July 17th, I was able to get an appointment. It just so happened that day was the one where my symptoms decided to conceal themselves. I didn’t have a fever all day, my nausea mostly went away, and everything just toned down.

I was upset. It’s not like I wanted to be sick. I wanted my pain to be validated. Noticed by a professional. I’d been suffering on and off for a month, with a spike in symptoms starting a few days before, and suddenly there’s nothing worth noting.

To my fury, my primary care doctor just suggested that I get out more and exercise. Afterwards, he had my dehydrated-ass self give a blood and urine sample. I would have to wait until Monday for any results. I went out hoping and praying that something would show up.

Then Saturday and Sunday went through and I think I was the most miserable I’ve been all year. That includes my 4 a.m. panic attacks about my play that was produced back in April. On Saturday, I was supposed to go on vacation to this country club thing with my dad just a couple hours away, but there was just no way I could go. My mom said I could’ve just gone and laid in bed like I was already doing, but that meant I’d have to take a shower, pack, and deal with being in the car with my dad. I didn’t even have enough energy to shower. I stayed home. Everyone seemed to assume that I would just go later on Tuesday when my mom and younger brother were off of work, but I already decided that I wasn’t going to go at all.

Plus, I heard the place had some lawsuits against them. Some kid got shot with an arrow because the archery area wasn’t being properly supervised.

My boyfriend cheered me up that Sunday by spending our 6 month anniversary watching Netflix at my house and eating some ice cream. I didn’t even know you could get a pint of ice cream from Marble Slab.

Monday I woke up pretty late. It was 2 or 3 in the afternoon already. I checked the messages on the house phone and I hadn’t gotten anything about the test results. I called them up and the person on the phone gave me some bullshit on how so-and-so wasn’t there, so they couldn’t do anything and that they would call me back. I sighed and crawled back into bed. I didn’t sleep. I couldn’t sleep. I was in some sort of limbo or purgatory where you exist only within a twin size bed.

Then I noticed it was almost 5. I called back the office, asking why no one has called me about my test results. I’m glad I did. They had put me on a call list for the next day. I was emphatic on how urgent it was that I get my results and the lady on the phone was actually sympathetic. You don’t get many of those. She said that the doctor could only access the results, but he had a few patients left to get through. I made her promise that he would call even if the office closed. I then heard her talking to someone else. It was my doctor. She said that he’d call.

My mom answered the call and shoved the phone into my ear. He said that everything on the test showed that I was fine. My white blood cell count was a bit high, but he said that that’s normal for “my condition.” I wanted to cry. I told him how I’d been feeling worse. He was surprised, but told me to call my GI doctor.

I paid $35 for someone who spent several years of their life studying medicine and various diseases to tell me to make a phone call to someone else.

What the everloving-

Luckily for me, my GI doctor’s office was closed. I had to call his emergency line where a rude woman began to pick apart how I phrased my “emergency.” I was breathless, tired, and exasperated at this point. I wanted answers and relief, but I wasn’t getting either. I had to call the line twice before I got a phone call straight from my GI doctor himself.

Bless this man and his entire medical practice.

He said for me to call the office the next morning and schedule a CAT scan and an appointment soon after. I heaved a sigh of relief. A CAT scan would definitely show what was wrong.

But we can’t always be right, can we?

Tuesday was the CAT scan. My mom stayed with me for it, but then left the next day for the vacation. Wednesday I was completely alone in the house and very sick. Luckily I was able to get a last minute appointment with my GI doctor that day. He said that the CAT scan didn’t show much, but he flat out said, “You look miserable, honey. Let’s get you to the hospital.”

I wasn’t surprised. Hell, I expected it. I headed out and called my parents when I got to the car. They said that I just need to go to the ER and get admitted, and that they’d be there once I got a room.

I had my boyfriend take me so I wouldn’t leave my car in the emergency room parking lot. He hates hospitals, but I was really glad to have him there with me. I’ve had to admit myself alone before and it’s awful. Having a hand to hold when you’re getting an IV put in is a nice change. He was able to stay until just before I got a hospital room.

I was severely dehydrated by this point. I hadn’t been able to keep anything down because of the nausea. I had to get a terrible IV spot on the inside of my right wrist, right on my thumb. I blame this for my not writing anything until now. I didn’t really sleep that first night. Nurses kept walking in and out, asking me questions, doing blood cultures (which is basically filling several big bottles of blood so they can let it sit with different chemicals that can show what’s wrong), and checking my vital signs.

Whoever said you actually sleep in hospitals was dead wrong. You really only cat nap or exist in a drug induced haze.

The next day my boyfriend and another friend visited as I went through colonoscopy prep. I chose cherry flavor GoLitely this time. I think I actually like the lemon lime flavor more, though. I somehow got hooked on this Keeping Up with the Kardashians marathon that was on and took a drink every time I mentally said “Oh my God” at them. I got through most of it before I was allowed to call it quits. I hadn’t eaten anything since I’d gotten there and I hadn’t been able to eat for the past couple days. The laxatives were just protocol at that point.

I still hadn’t heard from my parents. I probably should’ve called them, but I knew I wouldn’t be able to manage a confrontation without crying. I was upset that they hadn’t even asked how I was doing. I was on the verge of tears before my colonoscopy. Did they just flat out not care? Was my illness just inconvenient for them? Was their free vacation more important than their only daughter?

The answer to that is “pretty much, yeah.”

Luckily I had friends show up every day. My boyfriend showed up every day except for one day, which was a day he was worried he was getting sick, so he didn’t wanna get me sicker on accident. But my friends helped. They really helped. I’ve felt so alone in hospital rooms before. Feeling trapped in my own skin. Having to drag around a heavy IV tower if I wanted to go to the bathroom. I was able to laugh with them and I got them to tell me what they’d been doing that day.

I live vicariously through people all the time. Especially through people’s Facebook posts. I was even too tired to go through Facebook when I was in the hospital, though.

My dad showed up after my third day in the hospital. He walked in like it wasn’t a problem that it took three days for a parent to show up when their child was in the hospital.

I said, “I didn’t know it took three days to get here from [insert nearby city here.]”

He said, “Well, it’s not like we had an open ended thing there.”

Bullshit. He came home on Monday night to get my younger brother over there on Tuesday. Then on Wednesday, the day I was admitted, my mom and one of my older brothers went there. They just didn’t want to leave early just because I was in the hospital again.

Of course, if this gets brought up to any of them, they’re going to deny it. Even my GI doctor is disappointed in them. Apparently no one called him asking about me, either.

But the colonoscopy didn’t show much either. There were some pseudo polyps here and there, apparently, but my GI doctor said they weren’t cancerous, so they were left alone. Some biopsies were taken, but even the inflammation wasn’t that bad.

I hadn’t had any fevers since I’d been admitted, but that was because I was attached to constant fluids and the hospital room was like 60 degrees. I’d been getting antibiotics and steroids through the IV, too. I was even able to begrudgingly eat the pureed soup I was given on my liquid diet. I was in a lot of pain after I ate, but the nurses just gave me pain medicine every four hours.

On Monday, July 27th, I was discharged, but not without a few tears while talking to my GI doctor. I let him know how my parents never left their vacation, how they never called except to ask about how I left the house before i went to the hospital, and how I felt that they never took me seriously the entire time I was sick. When they finally visited, they treated it like it was a huge inconvenience that they had to make a stop at the hospital before going out to lunch.

My GI doctor took some of the blame himself, since I had been reporting the fevers, but didn’t do anything about it at first. I cried because I’m a huge baby when it comes to any sort of confrontation and being back on Prednisone just makes me emotional. I also cried because I was hurt. Luckily, my pain was finally acknowledged. I no longer threw up at the drop of a hat (I literally dropped something once and me bending over made me nauseous).

I’m tempted to get my GI doctor to flat out educate my parents about IBD and my personal medical history. He’d do it, too. He was upset to hear about how my parents reacted to my being admitted. My case was very severe when I was first diagnosed because I didn’t have health insurance, but I’m a very strong person. I was able to keep my grades up when I was having to leave class several times to go to the bathroom. I studied until fatigue took over and I fell asleep sitting up with my laptop open. I read things I usually ended up hating because I knew it would help my writing. I had a part time job on top of a full college work load. I did my extra curriculars. I had THREE plays produced this past school year. I commuted to and from school instead of living on campus because I was guilted into having to pay for my own gas to make things easier for the family.

My entire existence was summed up as inconvenient after all of the hard work I put in to being as alive as I could.

Again, it was my boyfriend to the rescue to get me home after being discharged. I would’ve had to stay until the late evening if I had to wait for my parents to get me (They both work. I wasn’t mad at them because of this, obviously.) I finally got my IV removed, changed back to normal clothes (Which really aren’t all they’re cracked up to be.), packed up my things, went to the pharmacy to get the new medications I’d been prescribed, and went home. I had him stay with me for a bit because I didn’t want my mom rampaging around the house as soon as she got home. She knew I was upset at her for only seeing me in the hospital when their vacation was over, so the first thing she would probably do it attack.

Luckily, Hispanic mothers make a complete 180 as soon as there’s company over. She quietly chatted and watched TV with us until it was time for him to leave. I didn’t do much afterward, because even going to the pharmacy exhausted me. Walking was flat out a chore. It’s what happens when you spend 5 days in a hospital bed. You’re encouraged to walk if you can, but pulling around the IV tower is annoying. The wheels are constantly flipping around and it’s really a two handed job, but you really can only use one.

I was really only glad to be home so I could see my dog and cats.

The next morning I woke up home alone to a very worrying 102 degree fever. I even almost blacked out as I was adjusting the thermostat. I wasn’t sure if I should go straight back to the ER or not, but I was determined to tough it out. I took some Tylenol, my antibiotics, and 40 mg of Prednisone, then covered myself in blankets and went back to sleep. I live-texted everything that was going on to my boyfriend, probably scaring the daylights out of him when I said that I couldn’t see anything for a good minute. He came over later in the day to make me a nice lunch. I didn’t want to start eating easy to make junk food and he was more than happy to oblige. We ate some burgers while watching Bob’s Burgers, which is pretty satisfying.

But here we are now. I’m having a bit of a harder time transitioning back into the real world this time around. I normally am able to roll right back into work or school after a hospital stay, but recently I’m barely able to get out of bed. I nearly lost it in a Cafe Express. I was grouchy already, but it didn’t help that my dad was being a jerk when they got everyone’s food order out but mine.

Right now I’m living on whatever leftovers are around the house, so I’ll be ok eventually.

Sorry about the novel. It’s been a long time since I’ve posted anything on here. I have my post hospital follow up appointment with my GI doctor tomorrow and I’m hoping to address some worries I have with him. I’ve recently been getting heartburn and I’m going to mention the fever spike and the fatigue.

I need to make sure to put everything in a list or I’m going to forget and tell him that everything’s peachy keen.

Until next time, my spoonies and spoonie supporters.

Advertisements

Update 6/8/2015

Hello everyone! Sorry I haven’t posted in almost a month. I would say that I’ve been busy, but I’ve stopped being busy about two weeks ago. My productivity levels have been shot in the face ever since Houston flooded.

Healthwise I’ve been pretty shaky. I’ve been having mysterious kidney problems, apparently. I had an ultrasound two weeks ago on my kidneys and my bladder. I’m still waiting for results on that.

I’m still waiting for results on a lot of things. Medical offices really need to revamped when it comes to contacting people in a timely matter and keeping forms from getting lost.

Also, I’ve noticed some blood in my stool recently, but it’s been ok for the past few days. I weirdly wasn’t in a lot of pain and wasn’t in any extra pain. I was confused about that, so I’ve been trying to schedule an appointment with my GI specialist. I was originally trying to schedule it the week of the flooding, but I had to get a blood test right before and every place was closed even after my appointment, so I had to reschedule for the next week. Then the second appointment date, they called me like two hours before that my referral expired; leaving me with no choice but to cancel. I called my primary care doctor right after and they said they’d get the referral sent as soon as they could get to the doctor. This was last Thursday.

On Friday, I got a callback and they said they just sent the referral. It was past the time my specialist’s office was open, so I decided to wait to call them until Monday (aka: today). I call my specialist’s office and asked if they had the referral and they couldn’t find it, so I sigh, give them a callback number, then call my primary care doctor right away. After being on hold for THIRTY MINUTES, I get a hold of someone. I asked my question, but there was no record of the referral being sent.

It took all of me not to start screaming.

Instead, I took a deep sigh, asked if they could send the referral as soon as they possibly could and to contact me after they did. She said ok and hung up.

But here’s a news flash! I just got a phone call from my specialist’s office saying the form was just misplaced and I have an appointment… for this Thursday.

I’ve had to wait for three weeks for just one appointment that was originally supposed to be a checkup. Now it’s an appointment with an actual concern for my personal health. I’m really annoyed at this point.

Hopefully the kidney/bladder ultrasound results come soon and that the blood in my urine was just a weird fluke that just happened at the office. Hopefully the blood in my stool was a weird fluke, too. I’m traveling out of town soon to go visit my boyfriend’s close family friends and then to my friend’s out-of-state wedding.

I really miss being healthy.

There’s no business like show business

Why do I do this to myself? Oh yeah, I have weird hobbies.

Tonight was my final for my acting class. A 30 minute monologue that I had spent the entire semester memorizing.

I don’t think pastors even talk that long. Let’s see, if a church service is an hour….

There’s usually 20 minutes of singing, at least in a Baptist church. Then there are announcements and a cheesy video to introduce the subject. That should take maybe 5-8 minutes, depending on how long the video is. Then at the end there’s offering, reminder about the announcements, a soulful song that you’re supposed to just sit and listen to, then you have to fight your way through the crowd to even get to the parking lot. That should take maybe another 10 minutes. That leaves about 20 minutes for the actual pastor.

But I digress. I don’t know if acting is the right career for me. I certainly love performing, but I just don’t have the energy to keep up anymore. I may just stick to being a playwright.

Having an acting/dance/figure skating background has certainly helped with my writing, though. I know how bodies and brains work. I know thought processes and personalities and character dynamics.

I also know the most important thing. The rule of threes. It’s when you’re listing something, you always make sure to list three things.

Anyways, that’s all I’ve got for today. I just now realized that all I’ve eaten today was a chocolate chip cookie because I’ve been too distracted by my nerves.

My major accomplishment today was that I was somehow able to gift wrap a kitchen trash can. It wasn’t easy, but I somehow did it.

Knowing when to ask for help… Or, why asking asking for help doesn’t mean giving up

I seriously have the hardest time asking for help. I’ll carry a whole load of groceries in one trip by myself, slowly scooting a 24 pack of water bottles on the floor while I carry a gallon of milk, a carton of eggs, and maybe some tortilla chips, before I let someone help. Want to know why?

Because I know that if I don’t do it, it’s not going to get done.

Or at least that’s what I’ve successfully convinced myself over the past few years.

What my chronic illness has taught me is that I really need to learn when to ask for help.

I just got a play produced and it turned out amazing. The only bad thing that happened was that the air mattress slowly deflated, but that wasn’t even a problem because it was just a set piece and no one sat on it during the play.

Thing is, every step of the process of getting to opening night was hell on earth. I’d have several cast members not show up and a director freaking out that she wouldn’t be able to make it to rehearsal last minute, so would I be able to lead things for the night because everyone else is busy too?

One rehearsal, I literally had only two out of five people show up. Three people earlier that day said, “If you need help, just ask.”

I texted those three people. Two of them didn’t respond while the third had a lot of homework to finish that night.

I’ve blocked whatever else happened during that rehearsal out of my memory.

But even though I didn’t actually receive help until toward the end, I actually learned how to ask for help.

As we were in the final weeks of rehearsals and the show date (April 25th) got closer and closer, people started coming out of the woodwork to help me.

By the time everything was said and done, the heaviest thing that I had to carry was my own backpack.

As much as I hate group projects and having to rely on other people, I’ve been taught a tough lesson this semester. No matter how much I want to, I can’t do everything like I used to. I’m not invincible.

But through all that stress, something incredible happened: art.

For those who are curious, I have a link to the video of the performance here.

Feel free to sponsor me during future life endeavors through my PayPal account linked over on the side.

Just kidding.

Not really.

Addressing the Current Romanticism of Cancer and Chronic Illnesses

Fault_in_our_stars

Because of a certain novel and now movie, both of which I enjoyed, people got their first look into the world of someone with a chronic illness. This made me realize that not everyone fully understands what it’s like to be sick forever. It’s different from having a seasonal cold that you know you’ll get over in a week. It’s being stuck knowing that the medicine you’re taking isn’t going to cure you.

People love cancer stories because they’re “inspiring”, but being sick isn’t as glamorous as it is in the movies. You don’t miraculously lose your virginity a few weeks before you die. You don’t fall in love with someone who has it as bad as you do. You end up living every day in fear that you might just die because of something going wrong. There isn’t someone who crawls into your hospital bed with you and holds you until you fall asleep. Augustus Waters doesn’t exist, but people like him die every day.

In movies, people with chronic illnesses are either miraculously cured or they’re seen dying while putting up a fight. They’re supposed to be an inspiration to us all. However, audience members can walk away whenever they want to. They can continue living their lives as they always have been. In these stories, there’s an end and there’s closure. They’re entertained by someone’s fight with a deadly disease.

My life isn’t a story. There isn’t an end yet. I always hear jokes being made how I have the body of an old lady, yet I look even young for my age. I’m seen as old already, so what’s going to happen if I ever made it that long?

I’m already seen as if I’m at my end.

The physical pain of a chronic illness is nothing compared to the emotional pain. The guy who wrote the chest burster scene from the movie Alien actually had an IBD as well. He based the pain of an alien creature busting straight through you to the pain felt with an IBD. That being said, I still claim that the emotional pain is worse.

There is no light at the end of the tunnel for me. There isn’t going to be a happy ending. I’m stuck with this ball-and-chain of a problem for the rest of my life. I’m the caged bird – trapped as my peers spread their wings. I feel like a burden. I feel completely useless.

My current life plan is hoping that my doctors wait to remove my large intestine after I graduate from college. I’ve already got it all planned out that I can write from a hospital bed. Isn’t that sad?

I crave normalcy. I crave a cure that doesn’t involve me losing a major organ. I crave to have a happy ending, but I’m not going to get that.

So no, being sick forever isn’t all fun trips to Disney Land and Amsterdam. It isn’t holding hands in the pale moon light with your fellow misfit of a significant other. It’s going through medication treatments that are going to probably hurt you more than help you.

It’s living in fear that today’s going to be your last good day.

A blog about a chronically ill college student