Tag Archives: Prednisolone

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.

Healthcare… Yay…

Well, today I figured out why I’ve been so tired. I’m two weeks late on my second Remicade infusion. Something on my chart was marked/read wrong and it got everyone messed up, but of course I’m the one who has to pay for it. Apparently you get your second infusion of Remicade two weeks after your first, then it you have your infusions done every six weeks.

Whoops?

At least I don’t have to go out and buy extra vitamins like I was originally planning.

Ugh, I’m so frustrated about all of this. My insurance isn’t wanting to approve Remicade for me just like how it was in the hospital. I don’t know why we’re having to much trouble. It’s better than having to pay out of pocket like I used to, at least. 

Also with all of these insurance issues, it won’t be until next week when I get my next infusion done. I was hoping I could get it done by tomorrow, even, but nope.

But yeah, basically I’ve been tapering off of Prednisone with nothing else in my system to help me out. Sure, I have Lialda, but the other day I saw undigested pills of it in the toilet.

Disgusting and alarming.

I really hope things end up working out, because I’m really tired of stressing out about this. I’m tired of running out of spoons by the middle of the day. I just feel so isolated.

Sorry for the explosion of feelings in this post. I have too many and don’t know where to put them.

Drop Down Day. AKA: Double D-Day

I dropped down from 40 mg to 30 today and right now I feel like I got hit by a train. I was actually doing really well until about 6:30-ish this afternoon, which is pretty great considering the fact that I had such a busy day. I didn’t sleep very well because drinking last night made me as gassy as I expected, but that’s my own fault. I took some nausea medicine, but that ended up just leaving me staring at the ceiling as it felt like my head was being pushed into my pillow and my brain being thrown into a blender.

It did help out in the end, though.

This morning was the most eventful part of my day. I “woke up” to a text from a friend asking if I was awake. I ignored it for a minute, but then my phone started ringing and I knew something was wrong.

Apparently communication on how to get the bride’s makeup artist (also a friend of mine) to the salon she was getting ready at fell through. Whoops. I was the first person my friend could think of to do it since she was stuck at the airport. I dragged my butt out of bed, got ready as fast as I could, then sped out the door. We only ended up being 30 minutes late, which ended up being well timed because they salon apparently had just started working on the bride’s hair.

It’s so weird seeing your friends getting married. It’s gonna be hard to find someone who’s willing to deal with all of my drama and bad luck.

It was a really nice wedding, though. A bit smaller than I expected, but nice. Hearing the thunder rumbling outside during the ceremony was pretty cool. During the reception, I was able to pick through things that I could eat and the groom’s cake actually had bacon in it! I just avoided anything that I couldn’t recognize.

There wasn’t any dancing, making it a truly Baptist wedding. I didn’t mind. I probably wouldn’t have danced either. I was more interested in socializing with friends that I mostly haven’t seen since school got out, anyways. One of my friends started playing on the piano in the room, improvising various love songs she knew at the top of her head. That girl is amazing at what she does.

Trailing behind a cloud of bubbles, everyone left out in the rain. My friend and I didn’t want to go home yet, so we ended up going to Fry’s (a computer hardware store). While we were there, I played this one demo of a game called Octodad, which was seriously the funniest game I’ve ever played. Each movement of the Octodad was tied to a button, kinda like QWOP. 

Ironically, the demo included him having to get ready for his wedding. I had him flopping around the church and making all sorts of mess.

Once I got home, I took a nap because I was starting to get kinda tired. Unfortunately, I woke up feeling absolutely awful. I ended up chugging a bottle of water and eating part of a chicken sandwich, hoping it would help. After I was done, I realized that today was a drop down day with steroids. I feel a little better now, but still not like how I was earlier today. Cramps are definitely a thing that are going on right now.

It was nice getting to see friends. That’s something that hasn’t happened in a while. Tomorrow’s going to have to be a recovery day for sure, though.

Dream Diaries

After all this time, I’m just now finding out that Prednisone causes weird dreams. Everything seriously makes sense now. I always thought it was just because I’m me and that I’ve just got a vivid imagination.

There was even one time where I had a dream that my friends and I had to send my childhood dog to sniff out a murderer and ended up finding a giant purple pearl (about bowling ball sized). Then there were these flying octopuses trying to steal the pearl, then once they got it, the pearl transformed into a jellyfish with Beyoncé’s face.

I couldn’t make this up even if I tried.

Last night I had this dream that I was living in a trailer park somewhere and this one girl I know was my mom for some reason. I had been drinking and she was trying to ground me for doing so, so I yelled and ran out. I didn’t yell the typical “You’re not my mother, you can’t tell me what to do” business, but I said “What the hell, I’m 21!” and just bolted.

Even my dream self just rolls with it. I really gotta get out of the habit of doing that because it’s gotten me into nothing but the weirdest situations.

After I started running, these people tried to kidnap me and tie me up using zip ties. I actually watched this one video a while back on how to break out of those if your wrists are tied together. I’ll link it here. 

Apparently my dream self has perfected that technique.

But what I’m here to say is that apparently these weird dreams are normal… For now. I’m just glad I haven’t had a dream where all my teeth fall out recently. I used to get those at least twice a month during school.

Maybe I’ll somehow combine the weirdness of these dreams and use it for a story sometime. I’m sure it’ll at least be entertaining.

Scrambled Brains

Tapering off of Prednisone is hard. I’m nearly a week into 40 mg and I’m still getting headaches. I’ve had one all day and I’ve tried everything from taking some Tylenol to drinking coffee. It’s really low grade, maybe about a 4, but it hasn’t budged.

I’m scheduled to drop down to 30 mg after 10 days and then 20 mg after that. I’ve heard horror stories of people having to drop down from 1000 mg, so thank God I’m not in that situation. I can’t imagine the side effects from that crazy dose. I’d probably swell up like a balloon, try to drink the entire Pacific Ocean, and probably burn down a building.

I feel like the one benefit from all of this that I know I’ll never mess with any sort of hard drugs. Feelings of withdrawal are killer. I’m always tired, I get headaches, I sweat like a pig, after a long day it feels like my legs are gonna fall off, and you can forget ever feeling full. It’s a real struggle, but I know I’ll feel a lot happier once this is all done.

Not much has been going on. I’ve mostly been either eating, sleeping, or watching Netflix since Friday night. I actually finished Merlin finally last night/this morning and I’ve decided to start watching season 2 of Orange is the New Black. I just finished up episode 2.

The anonymous messenger from Friday hasn’t come back at all either, so there’s that off my back.

On Saturday my dad forgot me at my family’s restaurant and I wasn’t able to go home for several hours since I wasn’t the one who drove. I just sat there and was glad I had my 3DS with me, so I played Animal Crossing until he was able to come back from work and get me. I wasn’t too happy, I can tell you that.

Also, consider adding scrambled eggs to your hamburger. I had a Prednisone craving this morning and it turned out amazingly.

This is definitely a low energy day. Sorry guys, I don’t have much else to talk about today.

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.