Tag Archives: muscle pain

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 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.