Tag Archives: uc

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.

 

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.

Sunday Recovery Day

I did a thing yesterday

So I’m a bit more worn out that I expected from my adventures from yesterday. My legs are sore and my pain level is about a 5. It’s definitely not as bad as it’s been, but I am pretty tired. Not quite tired enough to be able to nap through the noise in my house, though. Every TV is on and my brother is blasting some sort of video game in the next room. Peace and quiet can only be achieved if your the only one home in my household. Even then the dog will probably start barking at nothing randomly.

On the bright side, I finally got a new mattress. My old one was older than I am, so I’m glad for the change. The only downside is that it’s my dead step-grandfather’s old mattress and that it’s too long for my bed frame. At this point, I’m not really allowed to be picky since my old mattress had springs poking out of it and would stab at me in the middle of the night. I deal with enough pain as it is. Plus, I’m pretty sure it’s a Tempur-Pedic…

Being an introvert, I need to let myself recharge along with the fact that I have a chronic illness that causes fatigue. Here are some things I usually end up doing on my personal recovery days:

  • Eat. Because food is delicious. Calories mean nothing on these days.
  • Hydrate. I have this jug that I got from the hospital that I’m pretty sure is a liter big. I try to go through as many of those as I can.
  • Nap. I try to avoid taking long ones. Maybe 30 minutes to an hour tops.
  • Stretch. I don’t do this as much as I should. It usually just depends on my energy level for the day.
  • Read. As an English major, this is a mandatory hobby. I’m currently reading An Abundance of Katherines by John Green. It’s a lot different from his writing style in The Fault in Our Stars, so it’s a bit weird to read now.
  • Catch up on TV shows. I’m currently watching the Game Grumps (it’s a YouTube channel) play Pokémon FireRed and Merlin, next I’m planning on finishing up Game of Thrones because I’ve only seen the first season, then I’m gonna watch season 2 of Orange is the New Black. Avoiding spoilers has been the hardest thing.for these shows.
  • Video games. Again, this depends on my energy levels. I don’t play as many video games as I used to. It’s weird that I haven’t been playing very many considering I’ve been playing them since before I could read properly. I’m pretty sure it was Pokémon Gold that taught me how to read faster.
  • Write. Hey, look at that. I’m doing this right now. I really would like to get published for fiction someday, but I’ve currently convinced myself that I can build some sort of audience with blog writing. Trying out different genres is part of the writer’s job, anyways. I’ve had a lot of people tell me that they can actually hear me talking to them when they’ve read my nonfiction writing. Apparently I can capture my narrative voice pretty well.

Well, that’s all I really have for today. It’s been a pretty lazy, wonderful Sunday if I do say so myself.

BBC, UC, and IBD

The alphabet soup of chaos happened this morning with the BBC Breakfast interview about IBD and fatigue. Click here to watch the brief video.

This morning when I first found out about this interview, I had high hopes with my disease getting international attention, but was disappointed to find out that the BBC Breakfast hosts didn’t really know much about anything at all. The hosts claim right off the bat that doctors blame “too much junk food and antibiotics” to be the cause of genetic autoimmune diseases. I spent the rest of the time scratching my head at anything that these so called specialists had to say. The only ones I felt like I could really trust were the ones they interviewed with Crohn’s disease (Liam Ruff) and ulcerative colitis (Rachel Flint). They seemed to be the ones most prepared and knowledgeable about their diseases.

Consulting Gastroenterologist Dr. Sally Mitton jumped straight to attacking the “junk food lifestyle” of younger people, what with the jump from nearly 5,000 hospitalized cases to nearly 20,000 within the past 10 years. Excessive use of antibiotics were attacked by Dr. Mitton as well, but I know for sure that that’s not the case with me. I lead a healthy, athletic, and active lifestyle as a child. Figure skating, weight lifting, good work ethic, and other extracurriculars were the main part of my grade school life. Days off were a luxury and not even my weekends were spared. I was indeed a very picky eater, and still am, but I was and am able to maintain a nutritional balance.

The worst thing that happened to me health-wise before I was 20 was getting tonsillitis, which ended up with me getting my tonsils, adenoids, and my sinuses reshaped at age 11. Other than that, I’d gotten the yearly cold and/or stomach bug just like the average person. The possibility of genetics being more of a cause of autoimmune diseases were not discussed in detail at all.

What I’m really glad what ended up being addressed was the general embarrassment of the disease. Yes, it’s taboo to discuss your bathroom habits, especially if you’re a girl. I’ll be the first to admit that it’s still a bit embarrassing. The word “colon” is even one of my cringe words. Colon, large intestine, ulcers, bowels, polyps… Ugh.

This sense of embarrassment led to about two months of silent suffering before I could even tell my mother what was going on with me. The day I broke down, she had been telling me a list of chores I needed to get done (laundry, feed the dog, do the dishes, clean my room, etc.), but I was as nauseous as if I had just tumbled out of a washing machine, had a 100 degree fever, and still had homework to do! I also knew that since I didn’t have any health insurance, not much could be done other than what I was already doing: the over the counter treatment. Unfortunately, or maybe this can even be considered fortunate, I had a blood test done several months down the road that gave a reading that forced my first ulcerative colitis related hospital admission which led to my initial diagnoses.

Fatigue is also mentioned in the interview and it’s explained a lot better than anything else due to the fact that they turn to the people with Crohn’s and colitis to describe it. A deep bone fatigue where you can hardly get out of bed and having to sleep on the floor of your bathroom because you’re too tired to walk back and forth from your bed is a familiar feeling to those with IBD. This is another way to describe The Spoon Theory and the idea of spoons like I talked about yesterday.

I’ve been fighting against the stigma that this is an embarrassing disease. Hell, thanks to Lance Armstrong, testicular cancer is being taken seriously now. (No offense to those with testicular cancer. I’m just saying.) I’m always open to answering questions about how I live my life day to day. I used to be quiet about it, but just a few weeks ago I was able to admit to friends why I can’t eat almonds or carrots.

It’s because they come out looking the same as they came in. It’s a fiber thing.

Overall, I’m really disappointed with how these so called medical specialists handled this interview by blaming it on the young people who suffer daily by their supposed food choices and failing to mention any other possibilities of these awful diseases. This could’ve been handled much more professionally if more research had been done. The fact that not much are known about autoimmune diseases is no excuse if you’re planning on doing a full scale interview in this manner.

I’m glad Dr. Nasrullah Manji is my GI specialist and not Dr. Sally Mitton. I’m glad Rachel Flint was there to set the record straight at the very end and say that despite the fact that she has ulcerative colitis, she maintains a relatively healthy diet. I can only hope that someday that those with Inflammatory Bowel Diseases will get the proper public awareness that we deserve.