Tag Archives: hospital

Pokemon Go… Gently

Fellow Spoonie Pokemon Trainers! I’ve figured out a few tricks in order to get a good experience of playing Pokemon Go and not completely spending all of your spoons for several weeks.

  • If you close the app and just go to the home screen (don’t close it completely or you’ll have to go through the lengthy log in process every time) you can open it up again and your GPS/character will be wandering around for a bit. This counts as distance. I’ve been doing this for hatching eggs in Houston, where it’s almost impossible for even abled people to go out during the day in the summer.
  • Use Incense! You can attract Pokemon to come to you rather than spending spoons to go searching. You’ll usually get more common Pokemon (Bug and Normal types), but it adds up! The more stardust you have, the better.
  • Lures! You don’t have to walk too much when you’re at a Pokestop with lures. They come to you. Make sure you’re well stocked on Pokeballs.
  • Get a friend to drive you around. You’re in charge of catching Pokemon for them, though. Do not Pokemon and drive. It’s actually  hilarious trying to catch two at once. Maybe do this around a neighborhood or empty parking lots where erratic driving is a bit more forgivable.
  • Stock up on common Pokemon in your area (Pidgey, Rattata, Caterpie, Weedle, etc.) and their respective candies. Then, use your Lucky Egg and evolve them during that 30 minute period. You gain about 600 EXP when you evolve something, so with the Lucky Egg, you’ll get 1200 EXP for one evolution! You don’t have to use stardust to evolve anything, either.
  • Got a wagon? Use it. Have friends or family members pull you around. It’ll remind you of the good old days. They seem a bit better for rougher terrain than wheelchairs.
  • Here’s something I’ve discovered myself! If you’re in the same spot for a while, some random Pokemon just show up! It’s usually the more common ones in your area, but the more stardust you can get, the better.
  • How to get whatever Eeveelution you want: (Ok, don’t kill me if this doesn’t work, but I myself have seen two successful desired evolutions with this method. I’ll update it once I’m able to do this myself since I’m low on Eevee candy.) You nickname the Eevees before evolving them. It’s Rainer to get Vaporeon, Sparky to get Jolteon, and Pyro to get Flareon. This is based off of the episode from season 1 of Pokemon where the kid brother gets pressured to evolve his Eevee using an evolution stone. Please comment below if this method actually works for you! I don’t want to be spreading misinformation.
    Edit: I’m absolutely positive this is real. I’ve seen it about three more times and I’ve done it myself to get a Flareon and a Jolteon after getting two Vaporeon by chance. It works.
  • The curve ball. You can do this by spinning the Pokeball around in circles before you throw it. You can tell it’s charged up if you see sparks flying from it. It’s a bit harder to catch stuff, but you get an extra 10 EXP for doing it successfully.
  • Here’s one I’ve just heard recently. You can download the Ingress app and search for Pokestops in your area since the Pokemon Go app doesn’t map out outside your area. Landmarks are also marked in the Ingress app so you can plan out routes and breaks. Pokestops refresh every 5 minutes or so, so you can rest in a shady area near one and farm items and 50 EXP every time.
  • This is something I have been trying to tell myself, but know when to stop. I got really close to hurting myself from walking nearly 5 km in one go to hatch an egg. My knees and ankles were radiating with pain. I was surprised that people near me couldn’t feel it. Don’t do that. Ash wouldn’t want that. He knew when it was time to stop and take a rest for the day. There’s no need to feel like you need to compete with others that are playing. It’s just a fun game (that should’ve probably had a bit more time spent on it with all the server problems there have been, but I digress).

And as a final question to Spoonie Trainers: I know we all can’t go on a Pokemon journey, but what kind of life do you think you would have if Pokemon were real? I’ve always pictured myself keeping them as pets or guard animals – most of them being abandoned strays before I find them. This is the case with almost all of my pets, so I figured that wouldn’t change in this fantasy world.

Now please excuse me, two Eevee just showed up and I’m freaking out.

Edit: The game crashed as soon as I caught one of them. Of course.

 

Why You Should Date a Guy with IBD

So I feel like I should be a different gender while writing this, but I’m working with what I got. I’ve got a health problem where people have varying degrees of the same symptoms, so I’d still be where I am if I were a guy. I’m writing in the defense of people I know who have a hard time finding someone to stick with them, guys with chronic illnesses. It’s rough living life with a chronically inflamed colon. I’m having to dart in and out of the bathroom while editing this because I’m currently in a pretty bad flare right now.

But I digress, here’s the list you actually came here to see.

*Disclaimer: This is geared for mostly for straight women, but I guess a gay man could benefit from reading this list as well.

  • He makes plans ahead of time.

There’s nothing better than a guy who’s planned out the evening. I’ll bet that when he agrees to a restaurant, he knows some great, safe foods that you can get there. He also will know where the bathroom is well before you’ll need to go. When you have IBD or any other kind of chronic illness, it’s hard to allow yourself to be spontaneous.

  • Staying in is always on the table for dates

Netflix, hot tea, and blankets are always a safe bet for someone with a chronic illness. Getting to unwind is a great way to recharge spoons. You’ll also have first dibs on snacks like popcorn and pizza since he will most likely be avoiding those.

  • He’ll actually know what cramps feel like

Believe it or not, this is 100% true. Whenever I’m flaring up, it usually takes a couple days to figure out if it’s a flare up or if my period is coming up. Luckily for guys, they only have one part in the general pelvic that’s messed up while I have a couple, if I were to be on my period at the same time during a flare. He’ll definitely have heating pads and some sort of comfort suggestions available for you.

Also, hey, you’ll both be losing blood at the same time. Misery loves company, right?

  • He’ll know how to listen

Not being listened to in a doctor’s office is one of the most infuriating things. Because of this, I always know to wait until I get all of the information before I start making a response. If someone were to have gone through the same things that I have, they would probably act the exact same way.

  • He’ll understand your issues with food (if you have any)

This point may not apply to you, but he’ll understand any sort of body or weight problem you’ve ever had. I get upset if I know if I’m getting either too fat or skinny. My body has changes based on that particular day. His will change, too. Intestinal bloating, gas, stretch marks from steroids, and all of that. If he’s a true human being, he’ll get self conscious too. The most self conscious I get is when I know my face is puffy from taking Prednisone for a long time. Wanna cut out gluten? No problem. You can do it together. You’ll be safe turning to him for any body image problems you may have.

  • He’ll probably know how to cook

Emphasis on probably, because this one actually doesn’t apply to me. I’m an awful cook, but a decent baker, I guess. I do know how to put together simple meals, though, that don’t upset my stomach. Most people with IBD can put together safe meals that everyone could enjoy because of the limited diets we have.

  • He’ll have a great sense of humor

If he’s not already a bitter grumpy puss, then he probably turns to the one weapon those with chronic illnesses have: humor. Poop jokes, or any type of bodily humor, is the best. A guy getting kicked in the nuts on home video? Classic. He’ll always have some sort of joke ready at the moment it’s needed.

  • Final notes

This is me hamming up the pros, but there are definitely going to be more cons. There are times where people with chronic illnesses have to think about themselves more than other people. Whatever illness he does have, it isn’t going to be easy. You can walk away whenever you want, but he’s still going to be sick. There are probably going to have to be hospital visits where you’ll have to help him out. Hospitals can be scary when you’re alone.

A New Diagnosis

One thing that I left out from my update yesterday is that I was diagnosed with a new illness. I now have type 2 diabetes. It’s because of the Prednisone that my body has become so dependent on. A side effect is that your blood sugar can skyrocket while you’re on it and that’s exactly what happened to me. It was more likely to happen because I have several family members with both types, but mostly type 1. It was only a matter of time.

Basically, Prednisone is now hurting me more than it’s helping me, but if I’m to ever get off of it, I’m going to end up in the hospital again.

In the hospital, they had done a three month test on my blood to see if it’s been high for that long and it has. Well… I’ve been on the steroids almost constantly since March. I’ve been off of them for maybe a little over a week total since then. I literally can’t get off of this medication until I start on some sort of alternative that can suppress my immune system since Remicade didn’t work long enough.

Now that school’s started again, things have gotten kinda rocky with how my health can hold up. I feel like my friends expect me to keel over at almost any second with the questions of people asking how I’m doing.

I’m not really mad or annoyed or anything, obviously. I know it’s because they care or they’re curious to how I’m still even kicking. It’s just funny to hear them ask something and see their eyes saying something else as they look me over. Invisible illnesses are tricky like that. With a cold, you can see someone’s runny nose and pale face. With me, there’s just about nothing. At this point, you can only see the bruises on my arms as proof that I was in the hospital.

And maybe my hospital wrist band, if you’re looking for it. I’m still wearing that for some reason.

I’m now on a new medication called Janumet. My mom was on it for a while and she said it’s worked a miracle on her. I’m not sure what to think. She had my primary care doctor put me on it even though my doctor in the hospital suggested two other medications for me.

I guess it’s better for me that I’m taking one medication instead of two. I already breakfast on a steady diet of at least six medications to start off my day. Most of them horse pill sized.

One thing I’ve discovered, though, is that I need to eat before I take Janumet. It tends to make me a bit nauseous if I don’t. This makes my morning dose a little difficult because I’m not much of a breakfast eater.

I know, I know. Shh.

But I’ve taken this news pretty well since the 23rd of August. I had received news months ago that I had the mark of high blood sugar show up in a blood test. A second test was done, which confirmed the first test. Then a third test was done at my primary care doctor’s office, which had said that my blood sugar was normal. That test alone dashed my fears for several months, but here we are now with an official diagnosis for diabetes.

Watch out, world, this ulcerative pancolitic diabetic doesn’t have much left to lose.

The Mega Update

I definitely have some apologizing to do with my absence from this blog. I didn’t expect things to go wrong as long as they did. My health took a sharp nose dive into the abyss that is reality when I had to take my leave. I had nothing but depressing news that I was overwhelmed with to process.

My Tumblr friends can attest to that after dealing with my complaining for so long. I’m surprised I still have followers left.

After my day in the ER with the high fever, I was given antibiotics to get over the UTI I had. The fever and nausea had me miserable. However, it turned out I was allergic to those (I’m allergic to literally nothing, surprisingly) antibiotics and they caused a bad flare up of my ulcerative colitis. I was off of Prednisone at the time for a little over a week, so I had nothing really to help me. I started bleeding again, I was nauseous, had zero appetite, and I was throwing up anything I tried eating.

I knew something was wrong and nothing I could do could help. My mom just tried to get me to eat soup.

I called my GI doctor on the morning of August 13th to ask what I should do. He wasn’t in that morning, so they said that he could call me back once he got into the office. I just went back to sleep while waiting and woke up with a fever again. I needed help right away, but everyone else in my family was too busy to take me to the ER. My mom and younger brother were busy taking my cats to the vet, my dad was at work, and my older brothers were busy with their jobs. My grandma could’ve taken me, but she never leaves her house anymore.

I sucked it up eventually and drove myself to the ER. I packed up everything because I knew it was going to be another long stay. I wish I had gone a bit earlier because of how long it ended up taking to get help. The waiting room in an ER in a full hospital is the actual worst. 

I felt bad for the nurses because when they drew my blood when I was getting processed. I ended up getting almost passing out, but throwing up on an empty stomach happened instead. It was a great feeling. They gave me Zofran and IV fluids right away, so I was already hooked up just sitting in the waiting room. I was mostly annoyed because they wouldn’t even let me drink water to get the lovely stomach bile taste out of my mouth.

It was 2 in the morning by the time I was given a hospital room, where they immediately had me started on a Golitely treatment for a colonoscopy the next morning. They wanted me to finish it by 4 am, but there was no way I was going to be able to do that. That stuff does not mess around. I did finish it by my procedure, so I guess it was mission accomplished. 

I’ll never get over how bad Golitely tastes. It’s ruined any lemon lime drink that I could ever drink for the rest of my life. 

Good bye forever, Sprite and 7Up. I won’t miss you much at all.

When I woke up from my colonoscopy, I was alone. Everyone was busy with their own lives, so I was left to deal with the brunt of the bad news. My condition has gotten even worse from how I was in early June. Even with the Remicade treatments I’ve been going through.

It had worked for a short time, but I had had an allergic reaction to it and it didn’t work as long as it was supposed to. I blame how mixed up everything got with the scheduling of it.

My GI told me that if the steroid treatments that he’s going to put me on don’t work, then I’ll have to talk to a surgeon.

I almost broke down then and there, but he quickly left and I just stared blankly (and blindly, since I didn’t have my glasses on) at the wall until they moved me back to my hospital room. My heart sank into the floor. Hearing such an ultimatum just numbed me. Once I was settled back in, I went straight to sleep. I just didn’t want to think anymore.

When I woke up, I was told that my insurance doesn’t cover the hospital I walked in to. I was super confused since I had spent my June hospital stay at that exact same hospital. Luckily they were able to move me to a hospital I had gone to for my first kidney stone through an ambulance.

It was super weird. Ambulances are much more cramped that I would’ve expected. Also the stretcher is pulled up super high compared to a gurney. I was raised up higher than I am tall, so it was funny being so high up while sitting. The paramedics I was with were super cool, though. They shit talked other people they’ve had to deal with once they realized how chill I was. I guess that’s the perks of being a young sick person.

I still don’t consider myself much of an adult.

Maybe an adult cat. I can take care of myself mostly, but I still need some help.

I got settled into my new hospital room easily enough. I started channel flipping on the TV and they had more stations available, so I feel like my conditions have improved. Also, the Spongebob movie was on Nickelodeon, so I was set for the night. 

That night was the roughest out of all the days I stayed. I was completely alone with my thoughts. It was just so much for me to hear that I might have to have my colon removed. I guess it’s not as dramatic as having to get a leg amputated or something, but I was terrified, even though I know it would instantly cure me to have it removed.

The next morning, a surgeon came in to talk to me. He said first thing that surgery is something that he wanted to avoid at all costs. It’s going to be a very last resort. He also took me off food and increased my IV fluids to make up for it. It was a little over three days that I had nothing but water and ice chips to chomp on when I was bored.

Meal times used to be my way of passing the time in the hospital. It was a routine. I no longer had that. It was a long three days.

Hunger was a surprising non issue, though. I guess having been nauseous for over a week already, my stomach lost its appeal for food. My taste buds were the main ones who suffered in this. If I were to ever doze off, I’d daydream about eating a cheeseburger. I don’t know why cheeseburger, honestly. But I’d catch myself softly biting into nothing/the imaginary cheeseburger.

Needless to say, once I got back on a regular diet, I ordered a cheeseburger.

My stay this time around ended up being the longest its ever been. 10 days and I barely got out in time for school. I feel like I got out when I did because I had mentioned to my GI doctor that I wanted to be ready for school. I don’t want to fall behind because my immune system can’t cut it. My future shouldn’t have to suffer for that. I want some sort of normalcy to work toward once a cure is found that doesn’t involve me having to get my large intestine cut out.

So… yeah, I’m so sorry about not updating anything for so long. That’s just the back story of the whirlwind I’m caught up in now. It’ll be a bit harder to do this daily since school’s started again, but I’m going to work my hardest to keep this up. I owe it to myself.

Second Remicade Day Log

Today was definitely an interesting one. It was my first time getting a medical treatment as an outpatient that wasn’t dental work or getting my tonsils removed.

So technically it wasn’t my first time???

Anyways, it was at least my first time going alone. It wasn’t too bad until I had to deal with the money part in this whole process. I did keep a time log like I had wanted to, though. Here it is.

9:30 a.m. – Somehow woke up before my alarm. I decided to get up after a couple minutes to take a shower early.

10:10 a.m. – Finished morning routine and started getting dressed.

10:17 a.m. – Started getting a ridiculous amount of phone calls from my mom. She forgot to give me a check for the payment for the infusion. She’d hang up before I could tell her anything else.

10:20 a.m. – Got distracted by the internet.

10:42 a.m. – Another phone call from Mom. “ARE YOU ON YOUR WAY YET? I HAVE THE CHECK READY FOR YOU TO PICK UP FROM THE RESTAURANT.” “I’m working on it.” 

10:54 a.m. – Got to restaurant, got a check, got breakfast/lunch.

11:20 a.m. – Left for the hospital to get the infusion done.

11:56 a.m. – Arrived at the hospital. I had a terrible parking spot. Having a handicapped parking sticker wouldn’t have helped me either because all of those spots were taken too. 

11:58 a.m. – I was given a restaurant buzzer kinda thing. I got it because I had to first register with the hospital before getting my infusion done.

12:00 p.m. – I found out that there was free wifi. I was very happy about that because I definitely forgot to bring a book. 

12:16 p.m. – I noticed that there was a snack bar in the lobby and I was debating on whether I should get a soda or something.

12:17 p.m. – Decided to get a soda. I got root beer. It was an excellent decision.

12:20 p.m. – I went to go sit back down and saw that half of a grumpy looking elderly couple had stolen the chair I had been sitting in. I was slightly miffed about it and spitefully sat across from them and started playing on my phone. I sure taught them a thing or two.

12:25 p.m. – I finally got called back for registration.

12:30 p.m. – It’s my appointment time and we’re nowhere near finished with everything.

12:38 p.m. – I apparently owed even more than I thought I did for my insurance’s deductible.

12:40 p.m. – I call my mom before writing the check to make sure everything’s ok. It wasn’t. People on another end of where I was start checking through my account to make sure everything is how it should be.

12:47 p.m. – I wrote down “I’m gonna need a drink after this” and I was so right.

12:48 p.m. – I finished my root beer.

1:01 p.m. – An agreement to partial payment has finally been made. I quickly write out the check and and the urge to urinate increases.

1:13 p.m. – I finally get the chance to go to the bathroom. It was glorious.

1:17 p.m. – I’ve made my way to the infusion center and dumbly stood in front of closed frosted glass windows.

1:24 p.m. – I’ve apparently grown a half an inch since I was last properly measured.

1:30 p.m. – Already an hour late. I warn the nurse that I was a hard stick and that butterfly needles were usually used on me.

1:31 p.m. – The first attempt with putting in the IV was a failure, but this time it wasn’t my vein’s fault! The little plastic tube part went in bent, so nothing was flushing through.

1:35 p.m. – A different nurse tried and ended blowing out one of my veins. I made the mistake of looking at my hand and gasped at what it looked like. It looked like a marble was stuck under my skin! It surprisingly didn’t hurt nearly as much as it looked.

1:40 p.m. – Finally a successful stick! I wasn’t a fan of how part of the tubing was wrapped around my finger, but I dealt with it.

1:44 p.m. – My nurse and I went over medicines and medical histories. Woo hoo for awkward questions about ever wanting to kill myself.

1:48 p.m. – I was given a dose of a medication that I don’t know the name of. I honestly couldn’t tell you.

1:52 p.m. – I finally got the TV remote. I flipped around until I got to Cartoon Network. Teen Titans Go was on. Not sure how I feel about it. I prefer the regular Teen Titans, I think.

1:59 p.m. – I got Benadryl through an infusion instead of a direct injection through my IV like last time. I think I like that better because it made me less loopy. 

2:05 p.m. – My nurse took my temperature and apparently I was running a fever. No surprises there. She asked me if I wanted anything to drink and she started listing out things. I said Gatorade was fine.

2:07 p.m. – Chugged down my Gatorade.

2:16 p.m. – I start feeling the effects of the Benadryl and I start taking cat naps.

2:22 p.m. – I started taking pictures of my IV for Instagram because I’m totes a hipster.

2:31 p.m. – The Benadryl is done and the Remicade now starts.

2:56 p.m. – A live action version of a Scooby Doo movie comes on, but it isn’t one of the ones I’ve seen. It was about them working at a country club and there are frog monsters.

There’s nothing documented during the 3 o’clock hour. I think I dozed off or was watching the movie. During this time there was an elderly lady in the infusion room for a little while.

4:04 p.m. – I start feeling slight abdominal pain and my finger tips start feeling itchy.

4:25 p.m. – My hands and feet are now bright red and very itchy. I point this out to my nurse.

4:30 p.m. – My elbows start getting itchy too.

4:35 p.m. – My infusion is stopped to see if I need more Benadryl. I was about 90% done with it anyways.

4:55 p.m. – I’m finally approved to get more Benadryl. It gets injected in this time and I’m knocked out like a light. 

5:23 p.m. – I get my IV taken out and my blood pressure is taken one last time.

5:26 p.m. – Finally getting out of bed to leave.

6:00 p.m. – Finally home from the hospital.

Apparently getting red and itchy is a serious side effect that you have to watch out for with Remicade. I hope that doesn’t mean that I have to switch medications already. 

Fingers crossed that this isn’t going to be a consistent thing.

Not a Queen

Here we are and I’m exhausted from a long day of doing nothing. I almost went to bed early and nearly forgot to make a post today. 

The kitten my family’s been taking care of for a little over a month now no longer has any traces of her ringworm, but mine is still in full swing. I’ve been taking extremely thorough and practically scalding showers and using even a prescription cream on them, but they aren’t budging. I had one come back today that I thought was gone and I found two more on the back of my right leg. I’m getting super annoyed about it. I thought having to deal with the chicken pox at age six gave me a free pass from dealing with stuff like this. Having a compromised immune system is seriously the worst.

I think my poor dog has gotten the worst of it, though. She kept finding ways to get to the kitten back when she was under strict quarantine and now she’s about as covered in them as I am.

Many of you will be happy to know that I named the kitten “Khaleesi”.

I’ve still only seen season one of Game of Thrones.

It’s also officially been a month since I’ve been out of the hospital. A month of a steady decline into the useless blob I am today. Welp, here’s to another month of hopefully keeping myself out of the hospital.

Perfectly Normal

When I was in the hospital, I expected my second colonoscopy to go a lot like my first. It mostly did, but there were some differences. The first difference that I was more than happy to experience was that prep wasn’t nearly as viscous. I couldn’t even finish the laxatives last time because I was so exhausted and disgusted, but apparently I had had enough to go through the procedure. I had about a liter left. This second time around I was able to finish with several hours to spare. I just asked for nausea medicine ahead of time and just chugged it at random points in time.

I honestly wouldn’t recommend that method to anyone.

I was annoyed that I had to leave my glasses behind the second time around since my mom wasn’t there, but I just dealt with it. No one wanted to be held responsible for losing them. I didn’t even bring my contacts with me and the probably would’ve told me to take them out anyways. 

As I was rolled on the gurney to the waiting room (it was more of an office), one of the nurses introduced himself and started asking me questions. What’s your full name, birth date, what procedure you’re getting done, how was your day – that sort of thing.

I always get half nervous that someone’s going to go “Wait, what?” when I answer the “What are you here for?” question.

“What are you here for?”

“A colonoscopy.”

“Wait, I thought this was a kidney removal.”

But as he was typing all of this up on a computer, he turned toward the anesthesiologist and said “Well, it looks like if it weren’t for her colitis, we’d have a perfectly normal young lady right here.”

What does that even mean anymore? “Perfectly normal” has to have some sort of standard that I don’t know of, because I don’t think I’d ever fit that.

I could only really manage an awkward laugh as suddenly the room exploded with nurses trying to stick things onto me.

“No need to panic, these are just for the heart monitor,” someone with a pair of VERY cold hands said. I just ended up giving up and holding my arms out like Magneto ascending to the sky so everyone could do their work.

I feel like nurses are so lucky to have me. When I had braces, my orthodontist used to let his interns work on me because I was so chill. Of course he’d check on their work after, but I’m pretty sure I’ve been poked and prodded more than the average patient.

Then I was eventually wheeled into the procedure room, where they had techno/house music playing. That definitely threw me off.

Also, the nurses were super nice and even complimented my skin. Usually I just get comments of concern asking if I’m ok since I’m so pale.

The last thing I remember before getting knocked out was one of those oxygen nose things being put on me and the air conditioning in the room getting really loud. It sounded like I was in a wind tunnel.

I’m still trying to figure out, though, what that nurse meant by there being a possibility of me being perfectly normal. Didn’t the Dursleys pride themselves in being perfectly normal, thank you very much? Then one day a baby wizard got dropped onto their doorstep and everything changed.

Is my ulcerative colitis my baby wizard?

Will it someday grow up and defeat the Dark Lord Voldemort and then join the wizard cops?

I’m definitely the best at analogies.