Tag Archives: Remicade

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.

 

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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.

Good news (finally)

I finally have good news! I’ve finally got a Remicade appointment for tomorrow! I can’t wait to get back on schedule with things.

Four weeks late isn’t that bad, right?

The main downside is that all of this is going to cost a lot even with insurance (thanks Obama). I’ve been trying to save up for a new laptop because mine now is about four and a half years old and currently missing the backspace button. I have to use the little senor nub underneath it now. It also has a lovely habit of shutting down whenever I try to pick it up.

I guess one can only dream of fancy gadgets. 

I’m kinda nervous about the appointment because I’ll be going alone. My parents will both be working and my younger brother is useless. I’ve been to the area once before for my primary care doctor, so I’m not completely helpless. 

I’m going to have to sit there for about two hours, the lady on the phone said. I’m definitely bringing a book, but I’m really hoping they have wifi. I’ll try to keep some sort of record log of what all happens.

Hopefully all of this will be worth it.

Vicarious Living

I can’t wait until Monday. Yup. There. I said it.

The reason why is because I can finally schedule my Remicade infusion appointment. I’ve been sick as a dog recently. I’ve been having fevers that have ranged from 99 to 101 degrees. 

I haven’t been able to do anything other than lie around the house being bored out of my mind. I’ve really missed hanging out with people. I have hardly anyone that I’m even talking to anymore.

I’m just stuck alone being tired and achy. 

At this point I’ve just been living vicariously though people’s Facebook, Instagram, and Snapchat pictures.

I can’t wait until I get even an ounce of energy.

The Nosedive

Turns out my downward spiral has turned into a nosedive.  I felt feverish and dressed much more warmly than I normally would for a Houston summer morning. I had had weird dreams where I was walking around my school’s campus, struggling to follow after my mom. I would have to stop and rest by pressing my head onto random buildings. Then I found myself having a hard time drinking water through straws and found myself walking on the ceiling of a room and had to let myself fall in order to get down to the ground.

I took my temperature, but it was surprisingly normal. I almost called in sick to work, but I forced myself to get up after taking Zofran and four Tylenol. I also chugged down two water bottles because apparently my real life self was thirsty, too.

My poor liver will probably the first thing to go. 

Work wasn’t too bad now that we’re mostly done shifting the books around. Shelves are being moved around now and girls aren’t allowed to do heavy lifting. If I were the same person I was five or six years ago, I would’ve been offended and insisted on helping. Alas, I am not the crazy figure skating secret body builder I once was. I mostly sat around and answered questions as per usual. I did help some kids in a scavenger hunt find the biggest book in the library, so that was fun.

When I got home, I immediately took a nap. Taking all that medicine had wiped me out. Once I decided to get up, I watched a few episodes of Parks and Rec until it was time to pick up my mom from work. We got dinner at a sushi place that was really good. 

I probably shouldn’t have gotten sushi since my stomach’s been so bad, but it took things surprisingly well. Either way, it would’ve been totally worth it.

Once we got home, I laid around for a bit until my mom turned Parks and Rec off on me. I went to my room instead to wait for the new Legend of Korra episode to air. I don’t have cable, so I either wait for it to show up online or I get lucky and find a livestream. This time around I found a livestream. As I was watching the second episode that was showing tonight, I began to feel feverish again, so I checked my temperature during a commercial break. It was a whopping 100.2. I showed it to my mom and said “I told you something was wrong”.

I had mentioned to her at dinner that my pelvic pain was getting worse and more frequent and that I felt like I was getting sick. Her only advice was a stern “Go take a Tylenol”.

So I did.

My fever’s broke for now, but I know it’s coming back soon.

By soon I mean like… tomorrow.

Apparently the people in charge of approving my Remicade for me called earlier today and left a voice mail to call them back. That’s definitely the first thing I’m going to do on Monday, because things are going to get so much worse if I don’t get my infusion soon.

The Foggiest of Brains

I’ve definitely lost a few spoons for how many I have per day. Either that or yesterday I used some for today without realizing it. This morning I woke up at about 5 in the morning with a bad stomach ache, so I went ahead and took some of my heavy duty anti-nausea medicine and fell back asleep.

Four hours later, when it wore off, I woke up feeling like I had a fever. All achy shakey and with the worst headache. I took my temperature and it showed a normal 98.6. I was super confused, but took some Tylenol and went back to sleep.

The next thing I knew, it was 2:30 in the afternoon! What?! I still felt terrible, too. I made myself some cereal and tea, but not without accidentally microwaving an empty mug for two minutes and choosing out a fork instead of a spoon. 

Whoops.

The only reason why I even left the house today was because I had to get my mom from work. This is how the rest of my afternoon went.

  • Got my car inspected
  • Went to Sam’s
  • Turns out they no longer stock the thing we needed
  • Got ice cream and pizza instead

I ate ice cream just now with the leftover M&Ms I had from the other day. 

I seriously can’t wait until my Prednisone withdrawal symptoms are over and I get my Remicade infusion. I know I’ll be a much happier Lauren.

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.