Tag Archives: spoonie problems

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.

Have You Tried Yoga?

I found something on Tumblr that encompasses my feelings about yoga being used to treat disabilites.

Ok so I need to write out why the “have you tried yoga” thing bugs me so much. First of all, I know my body better than you so stop. You know nothing about my condition. You are not a qualified expert (and some doctors don’t even fall under this catagory as they tend to shy away from people with chronic illnesses). You are not a person living with this disability. You cannot understand or relate, as much as you may want to. I am the one living with this not you. Secondly, it places the blame on me and not on my condition. It suggests that I’m not trying hard enough to feel better so the way I’m feeling is my fault. My dad tells me all the time that I would feel 100% better if I just exercised more. Living with a disability is difficult enough on it’s own so don’t try and suggest to me some idiotic suggestion about something you know nothing about. I do not chose to feel this way and I will not be cured by simply exercising or doing yoga. Please add on to this if you have other thoughts.

In all honesty, I love yoga. I love how calming an environment a yoga class can be if you can ignore the smell of the cardio class that just finished. It was one of my favorite things to do for skating. I was one of the best of my skating friends at it, if that even means anything. Can you be good at yoga? I was pretty strong, but not as flexible as most people expect figure skaters to be. I accepted it.

However, I haven’t attended any sort of yoga class or done it on my own since I started experiencing my IBD symptoms. Why?

Because I have only limited amounts of energy as someone with a chronic illness, so I spend my time and energy in ways I feel like it would be the most productive. I don’t feel like it would help my symptoms or help my joint pain.

Instead, I allow myself to rest and have some time to myself. I am an introvert, but I often find being with one or two other friends refreshing.

So, next time you meet someone with a chronic or mental illness, don’t ask them if they do yoga. That just makes them feel like they’re not doing enough to treat their illness, when they’re most likely doing a perfectly fine job. You’re placing the blame on them for not being healthy. You can’t know how they are feeling at that exact moment.

I’ve gone though outings with friends dealing with mild nausea and a headache. Once, I asked someone if they noticed anything weird about me as I was out with a fever (I was flaring, so nothing contagious, I promise). They said I looked fine.

Instead of asking someone with a chronic or mental illness if they’ve tried yoga, ask them how their day was.

The Waiting Game

I had a pretty good day today. I had a high amount of energy up until about 7 this evening when I was having to deal with people at the pharmacy after my doctor’s appointment. There was a lady who tried selling me a hair curler when my hair is practically as curly as Shirley Temple’s. When I explained that my unkempt mane is all natural, things got kinda awkward, so I just shuffled off to the pharmacy after mumbling something about not having the money for it anyways. Also while I was waiting, this one man kept pestering me about my place in line when I kept telling him that my prescription wasn’t even ready yet. I just wanted to be left alone with my phone and free Sam’s Club wifi.

My doctor’s appointment consisted mostly of waiting. In the actual waiting room, I was the youngest one there by a landslide. A few people kept staring at me like they were confused as to why I was there. It was super annoying. Then I got weighed… A bit more weight that I’d like to have, but I guess I’ll deal with that later. Prednisone is an absolute menace. As I was waiting in one of the offices, I attempted to make some sort of song by flipping my flip flops with my feet while playing Flappy Bird. Flip flop flap. I’m lucky I’m so easily entertained.

My doctor’s pleased with my results, though. I mentioned the bloating and joint pain I had last week, but also how it’s died down significantly. He set me up on a more detailed Prednisone taper for the next couple weeks to get completely off of it. I’ll be ecstatic when I’m finally done with it completely. I have another appointment with him in two weeks and that’s when we’re going to set up my next Remicade infusion.

It’s weird thinking that every 6 weeks, this is going to be my new normal. I really hope it keeps working, because I shudder to think of what could be next. I think it’ll be several years before my doctor suggests removing part (or even all) or my large intestine, but he did mention that my condition had worsened significantly since last time. He even said I technically have ulcerative pancolitis now, meaning that it’s my entire large intestine that’s affected instead of parts of it like it was when I was first diagnosed. I’ve heard of something called Humira and how you have to give yourself shots with something that kinda looks like an EPI pen. I definitely ain’t about that life. I’m not going to worry about these things until things start getting worse, though. 

At this point, all I can really do now is wait. Wait to get better or get worse.

Satan’s Tic Tacs

Satan's tic tacs

Today was my first day tapering down on Prednisone (again). I’ve gone down from 60 mg to 40 mg, which is a pretty big jump. I actually forgot at first because I took my morning medicine a bit earlier than I normally do, and then went back to sleep. I didn’t realize until one grouchy storm around the house and two naps later that I was acting differently than normal. I can normally control steroid rage pretty well since I’m more of a calm, level headed person. …At least I’d like to think I am. Although one time I thought my cat had been lost the same way my childhood dog had and I almost broke a chair. Turns out that he was just stuck in the garage in a box.

This being what I’m pretty sure is my fourth (maybe fifth) time tapering off of Prednisone, I’d like to say that I have a system to deal with it, but I really don’t. Even with a taper, I’ve had mild withdrawal symptoms each time. For me it’s a major loss of appetite and feeling like I’m about to get the flu. It’s super annoying. Usually my main concern is losing the weight I gained around my stomach and face. The “moon face” side effect is my least favorite because it makes me feel like a chipmunk.

That being said, I’m going to make a list of things I do to keep myself from feeling like I’m dying while tapering off of Prednisone.

  • Water. Again with the water. This will help you lose the water weight you gained. It seems counterproductive, but the more water you intake, the more your body will realize it doesn’t have to retain as much.
  • Calcium and Vitamin D. Believe it or not, steroids completely sap you of these. If you take Prednisone too long, you could actually get osteoporosis! It’s actually why my GI decided to start me with Remicade. Vitamins and slowly adding foods that contain these nutrients to your diet are your best bet. 
  • Naps. Naps are so important. Make up for all the times you’d fight not to take them in preschool. You’re going to need it. Cuddle buddies are optional, but highly recommended. A cat, dog, exotic pet, or significant other will do nicely.
  • Heating pads. These will become your new best friends because of the muscle fatigue. Take care with these because they are a fire/burn hazard.
  • Comfortable clothes. Be kind to yourself. Wearing a pair of heels at this point will probably kill you or deplete a crazy amount of spoons. Wear those sweats and that baggy t-shirt and comfortable shoes. Your body will thank you.
  • Wake up earlier. Yeah, I know. I do this personally because I know it’s going to take me a bit longer than usual in the morning. Achy joints and muscles don’t make for a friendly commute. I also do this to allow myself more trips to the bathroom if needed.

Well, this is about all I got. Don’t push yourself if you’re not ready for the real world.

P.S. The reason why I titled today’s blog entry “Satan’s Tic Tacs” because it’s a play on the actual taste of Prednisone. Many spoonies use it as a nickname for it. The taste and aftertaste are what I’d say is close to stomach acid. It’s super gross and I usually end up chugging an entire bottle of water after taking it.

How to be cool

Today was a gross day. It rained for several hours this afternoon and then by 5 o’clock the sun started beating down like nobody’s business, making Houston the sauna swamp that it’s always wanted to be. The only reason why I was outside was because I had to represent the organization I’m an officer for at my university (The Rex Fleming Players, whoop whoop!).

When I did this last summer, I nearly passed out from the heat because I was severely anemic at the time. Instead of passing out, though, my body reacted as if I were having a vicious bout of food poisoning. Being alone at the table at the time, things were extremely rough. I honestly have no idea how I got through that afternoon.

What really needs to be addressed is how to stay comfortable in this awful hot, humid weather when you have a chronic illness.

  • Water. If I’ve said it once, I’ve said it a thousand times. Water is EXTREMELY important when you’re outside in the heat. Drink water before and after your time outside.
  • Ice. It’s a good idea to use ice for a lot of things, but you need to be careful with it. Don’t go jumping into a pool of it right if your body’s overheated. That’s a one way ticket to getting sick and your muscles shocked. Also, if you’re working out, don’t drink ice water. It’s really bad for your kidneys. Save it until your body is ready.
  • Air conditioning. It’s an absolute lifesaver. I’m really lucky that I live in one of the most air conditioned cities in America. Don’t push yourself to stay outside longer than you need to. You have other things to worry about than getting a tan.
  • Thinner clothing. Modest is most definitely hottest in this case. Don’t be afraid to wear a tank top and shorts every once and a while. Your body will thank you.
  • Sunscreen. This isn’t really a way to stay cool, but with the thinner clothing, your body is more exposed to the sun’s evil rays. Skin cancer isn’t cute, so apply as suggested by the back of the bottle. I recommend the spray on sunscreen because they dry really quickly.
  • Shade. If you must be outside, shade is your best option to stay in. If you’re in a situation where you’re unable to be near it, either find a way to ask someone to accommodate to your needs or an umbrella will do nicely.
  • Electrolytes. These are super important. I knew a kid in high school that ended up having to be life-flighted to a hospital because he actually drank too much water and didn’t have any electrolytes in his body. Wait until after your time outside is over in order to fully recharge what you’ve lost. Gatorade, Powerade, or any sports drink will do fine. Don’t drink too much of it though because the sugars in these drinks will cause things to be counterproductive. 
  • Popsicles and ice cream. Because who would want to say no to these? Otter pops are super cheap at almost any grocery store and they’re also a personal favorite of mine.

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.