Have you tried my magic beans?

You don't have to phrase it all sappy like this, but something along these lines would be superb.
You don’t have to phrase it all sappy like this, but something along these lines would be superb.

I feel like that’s the one thing that I haven’t heard to try yet. Here’s a list of things that I’ve heard that still baffle me to this day.

  • Have you tried eating more fiber?
  • Should you be eating that?
  • You should think about going vegetarian.
  • I have this one friend with IBS and…
  • Are you contagious?
  • But you don’t look sick!
  • But you were fine yesterday!
  • Maybe you should try going vegan.
  • Aren’t you lactose intolerant?
  • Laying around all day won’t solve anything.
  • Are you sure you aren’t contagious?
  • Don’t let your disease control your life!
  • You need to get out more.
  • You should probably rest more.
  • You should exercise more.
  • Have you tried vitamins?
  • You could go out yesterday, why not today?
  • It’s all in your head. Just push through it.
  • You should lose some weight maybe.
  • Maybe you should gain some weight.
  • You’re too young to be dealing with these problems!
  • At least you don’t have cancer.
  • I get stomach aches too sometimes.
  • So what can you eat?
  • Stop stressing out so much!
  • So what exactly is wrong with you?
  • Pain medication is habit forming, you know.
  • Have you tried Ibuprofen?
  • Get well soon!
  • Are you better yet?
  • Does it hurt when I do this? *Pushes stomach*
  • You should try yoga.

This was just the tip of the iceberg of what I could think of at the top of my head. Yes, I have had random strangers grab my stomach! It’s super bizarre how I can relate to a pregnant woman when I have zero plans on becoming one myself.

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The Fault in Our Stalls

Yeah, you read that right. I finally got to see The Fault in Our Stars last night. I had wanted to see it on the release date, being a big fan of John Green and his work, but alas, I was admitted into the hospital the day it was released. I basically lived The Fault in Our Stars, minus the actual cancer part. I was poked, prodded, and asked “Does it hurt when I do this?”. I still have a wicked grape purple bruise on the inside of my left elbow from a bad attempt at a blood drawing at 5 in the morning. No hard feelings to those nurses, though. I have weird veins, apparently. Lucky me.

All in all, I thought it was a really cute movie. Pros: it was really accurate to the book. Cons: …It was really accurate to the book. I’m not much of a crier unless I get frustrated about something, but even I leaked out a few tears. The movie ended up making me think about my own health situation.

A lot of people take their health for granted these days, especially people my age (early 20’s). I was a pretty healthy person before I began to feel the symptoms on ulcerative colitis. I’m almost a year into being officially diagnosed and I still find myself trying to work the same way that I used to: straight into the ground. This past semester’s finals week was really rough on me: five finals and three of them on the same day. I even had a final on dead day. How bogus is that? I unfortunately didn’t get a chance to rest because I had signed up for a two week fast term class and picked up hours at work. I’d been on a dose of 30mg of Prednisone since a little after spring break, which is a pretty high dosage for a long amount of time, along with my four-pills-a-day of Lialda. Unfortunately, I began to notice that my energy levels began to decline dramatically and I was going to the restroom up to 20 times a day on average toward the end of my fast term class. The stress caught up to me and lead to intestinal bleeding and… Mucus. It’s really gross and painful.

I knew all of this wasn’t right, so I called my doctor after a weekend of waiting, was scheduled for an appointment that Thursday, and my doctor sent me straight to the hospital to be admitted for almost 8 days and got out late Friday the 13th.

Since I’ve gotten out of the hospital, my main struggle has been getting used to walking again. You don’t end up moving around much when you have a comfy bed that you can position however you want. I only ever left my room once for my colonoscopy and I only ever really got up to take care of bathroom breaks and personal hygiene. It was actually pretty fantastic if I say so myself.

Stairs have been my main issue these couple days. I’ve never been a huge fan of them because with off-ice figure skating training, I used to have to hop up a concrete staircase on one leg. I was always afraid I’d fall down and scrape something up. But now I’ve lost a lot of muscle sitting still for that long, though, not to mention gained a lot of joint pain.

I had to deal with stairs last night at my friend’s house and the movie theatre and today at a baseball game. I actually had to make a quick run to the bathroom during the middle of the movie last night and almost fell flat on my face. I let gravity take me down the wide theatre steps a bit too freely, and then as soon as I made it to the level ground in the front, my legs turned to Jell-O. Luckily I was able to flap my arms enough to steady myself out and leave before I made a fool of myself. It was a pretty bizarre experience, but I didn’t really think of it at the time. I really just had to go to the bathroom. I’ll only ever have to worry about running unless the zombie apocalypse ever happens, but I’m pretty sure Neil DeGrasse Tyson has already pretty solidly ruled that one out.

Today at the baseball game was pretty rough. I thought ahead and wrapped my left knee up in a knee brace to remind myself to slow it down. They both hurt, but I just sat and figured that my left one hurts a bit more. I leaned onto the stair rails when I could, but my arms are still pretty sore from the IVs I had. After a while of fetching snacks for myself and my mom, I started feeling sharp pain in now my knees AND my ankles with each stair step I took. I had pretty major injuries involving my ankles at various times during my skating career, so I guess that’s to be expected. Also, a side effect of strong steroids is bone degeneration and ultimately an early onset of osteoporosis. It’s pretty scary hearing that you could get that as early as 21. After all of that, I only ever got up from my seat to go to the bathroom in order to save energy. Luckily my older brother had gotten “diamond deck” seats, so we had a nice table in the shade right behind home plate.

If you just looked at me, you wouldn’t know anything was wrong. If I had a dollar for every time I heard “But you don’t look sick!” I’d be able to pay off my hospital bills overnight. I know it’s usually meant as a compliment, but it nearly invalidates all of the things I’ve gone through. There are other people with my “invisible” issues too, so don’t automatically look down on someone who stood up on their own for a little while even though they have a wheelchair or if they drove themselves to the handicapped parking spot with a valid sticker, but slid out of their car “without any problem”. Their main problem most likely isn’t the fact that they have mobility problems. I could even probably get a handicapped spot if I really looked into it because of my ulcerative colitis. I know there are some days where I really would need it to make a quick escape to the bathroom. Parking at my university is a nightmare for commuters, not to mention the walking to class part. Basically, don’t be a douche because there’s more of a chance that someone actually needs that cane than it actually being for show.

I’ve decided to look into taking more vitamins. I’ve been thinking at least Calcium and Vitamin D on top of everything else. I have a bit of an aversion to dairy products because of my ulcerative colitis, but I’ll definitely start drinking my milk. Milk’s more of an issue for me than the other products. Cheese is something I don’t think I’ll ever be able to let go.

I’m definitely planning on telling my doctor about the joint pain too during my hospital follow up visit this week. I’m gonna make sure to call in as soon as I get off of work tomorrow. Maybe I can get something that’ll help.

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How to prepare for a long stay in the hospital

So you’ve just gotten the doctor’s orders that you need to go to the hospital for an unknown period of time, but it’s not like you’ve broken a bone or bleeding out of your eyes, so you have a bit of time to get ready to go. One’s first reaction would be to panic and go there empty handed with nothing but you, yourself, and maybe your mom. However, there’s actually an art to preparedness in the world of the unexpected. Here’s what I did or packed up before my most recent week-long hospital stay because of an ulcerative colitis flare up.

  • Take a good shower. It’s going to be hard to take a decent shower in the hospital because you can’t get your IV wet. Your nurse will have to tape it up in plastic wrap like a cast. Also, depending on the nurse, it may take a while to get the nurse to actually help you with this. Also, depending on your energy levels, it might take you a while to even muster up the effort to deal with the foreign faucetry. During my first stay, I was a big seizure/fall risk because I had had a blood transfusion, so I even had to keep the door open so my mom could hear how I was doing. Luckily this time around I could have some privacy.
  • Eat something light. They’re probably going to want you to drink something gross for something or another and you’re not going to want to do it on an empty stomach. Don’t eat a full course meal or anything. Just a sandwich will do.
  • Pack extra clothes. You’re not going to want to wear the clothes you came in when they’re wheeling you out. Trust me.
  • Underwear. I almost forgot to pack those.
  • Sweatpants. Make sure to bring a pair without any metal in or on it, just in case you have to get some sort of scan done. CT scans aren’t a big fan of metal. They actually prefer pop and classical. You’ll have to slip them on and off under a blanket on a table if there’s metal and it’s super awkward.
  • Toiletries. You don’t have to worry about those too much unless you have a preferred brand of toothpaste. The hospital can usually supply a lot of these for you. My main issue was that I forgot to pack hair conditioner, which usually makes my curly hair a terror to deal with, but the travel sized Johnson’s baby shampoo they brought for me made my hair really soft. I also wear contacts, but I didn’t bother bringing them. My glasses were much easier. Also, don’t forget your deodorant. Ladies, if you’re thinking that time of the month is coming up, don’t take any chances. I’m sure the hospital has a lot of these somewhere, but at least for me, it’s less embarrassing to be self sufficient in this case. Pack it all.
  • Entertainment. This can vary from books to electronics. If it can fit in your bag, BRING IT! I brought my laptop, phone, the first of the Divergent series (my friend Katie later brought me the other two), and my 3DS. I thought about bringing a crochet project of mine, but depending on where your IV is put in, it can make doing things with your hands things difficult, so I decided against it. Those along with my room TV kept me entertained just fine. You’ll probably not end up getting to all of them either depending on how long your stay is. Don’t forget to bring the chargers for your electronics either.
  • Write out a list of the medications you’re on. This also calls for cover the counter things and vitamins you take. If you take it every day or if it’s prescribed by your doctor, make sure to take note of it for the paperwork you’ll have to fill out in the ER waiting room. I went ahead and actually brought my prescriptions with me, but I didn’t end up using my supply.
  • Fuzzy socks.  These are ideal because you won’t want to be wearing your shoes in bed, but everything in sight will be freezing cold. Sure, blankets are an option, but who could say no to fuzzy socks? Be sure to get a pair with the little gel grippers on the bottom for the tile floors.
  • Stuffed animal. A Pillow Pet would be the best thing you could ever bring. You’ll thank me later.
  • Patience. You’re basically hurrying up to wait. The waiting room of the ER is a horrible place of festering wounds, crying babies, and broken “instant” coffee machines. People who came in after you will probably be pushed in before you depending on how bad they look compared to you. Since what I had was “just” an ulcerative colitis flare up, I spent my last visit waiting 12 hours just in the waiting room. Apparently internal bleeding isn’t that big a deal. Sure, they processed a lot of work and did a bunch of scans and everything, but being cooped up and waiting is an awful experience.

If you follow these and maybe add some of your own ideas, you’ll be well on your way to a not exactly enjoyable, but… comfortable hospital stay. Just make sure you pray for nurses with good senses of humor and steady hands.

A blog about a chronically ill college student