Tag Archives: chronic 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.

 

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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 Invisible Hot Sauce World

I’ve come up with a good way to explain to normal people what it’s like to have IBD. My boyfriend mentioned once that me trying to figure out what to eat is like trying to find good food that’s not covered in hot sauce, and that’s what triggered this idea.

Imagine that there’s this type of hot sauce that gives you the most pain you’ve ever felt. Your stomach aches, you get the worst diarrhea any person could ever get. It’s not even worth adding to your food. The thing is, it’s invisible. You can’t smell it, taste it, feel it, or anything.

Then imagine you lived in a world where food was covered in it about 80% of the time. Everyone in invisible hot sauce world loves it except for you, because it makes you sick. In that leftover 20%, there’s 15% going to food that is definitely not covered in invisible hot sauce.

But eating just that 15% of the types of food there are in the invisible hot sauce world gets really boring. You miss regular food that’s not plain potatoes or chicken with zero spices. You get to the point where you’re desperate enough to take that leftover 5% and run with it.

In a world where 80% of food is covered in invisible hot sauce, 15% is definitely not covered in hot sauce, there’s a 5% chance that a normal food that you eat isn’t covered in hot sauce.

So after this breakdown, you order a greasy fast food cheeseburger, some curly fries, and a milkshake. There’s a 5% this meal won’t make you sick, but after being stuck with plain toast and chicken broth, you’ll deal with anything.

There’s an 80% chance it’s covered in the invisible hot sauce and there’s a 5% chance it isn’t.

This is why some days I can’t get myself to eat whatever is put in front of me. I’m just not ready to take that chance.

Mental health in lieu of physical health

Hey guys! I’m doing so much better than I was two months ago. I’m finally on Humira! I’ve had two doses already (6 shots total) and I feel already 100% better. Humira burns like crazy when you get the shot, but it’s a great trade off because I can finally eat things like a normal human!

But today I’m here to talk about something. Mental illness vs. physical illness.

It’s this BuzzFeed post that set me off today, but I’ve been thinking about this for a long time now.

Many people seem to think they understand physical illnesses more than mental illnesses. You often hear people saying to people with mental illnesses that it’s all in your head and you can stop being depressed by just thinking happy thoughts. They couldn’t be more wrong about that.

With physical illnesses, most people tend to be understanding if you have a cold or the flu, or even a migraine. They tell you to take some medicine and rest. You may even get reprimanded if you try to go to work/school again too early because you might get sicker.

When it comes to invisible physical illnesses, that’s the outlier no one expected.

I’ve lost count at how many people have suggested different diets to me instead of letting me eat what I feel comfortable with. How do you expect me to go paleo when I can’t even eat a salad without doubling over in pain a few hours later? I can’t go vegan or vegetarian, as much as I’d like to.

One time I tried kale and it came out looking the same way it did when I ate it. Painful? You bet.

I also like steak and chicken a bit too much to let meat go. Plus, chicken is one of the few things I can eat without any problems afterward.

I’ve also had people tell me “At least it’s not cancer!”

Like really, I’m supposed to be overjoyed that I don’t have something that can potentially go into remission and possibly get cured. Ulcerative colitis tends to go into remission if you get the right medication going, but it can come back at the drop of a hat.

I’ve heard general statements that my fatigue is all in my head and if I just workout more, I’ll be fine.

Yeah, you try telling that to my anemia. I’m sure it’ll start letting up after I pass out on an elliptical a few times.

What I’m trying to say is, that physical illnesses are often thrown under the bus when you’re talking about mental illnesses. I’m starting to get really tired of people refusing to see what they’re doing is destructive. When I say I’m sick, I’m fucking sick. It probably doesn’t look it, though.

I nearly died from blood loss because no one believed me when I said I was sick until it was almost too late. I never want to be that sick again.

Now, let this be known that I’m nothing but for promoting mental health awareness, but if your method of informing people is to compare it to making people doubt physical health, you’re doing it wrong.

Don’t forget that invisible illnesses exist. Mental illnesses are really just the cause of a physically “sick” brain. Really, mental illnesses are physical illnesses too. There’s a reason why medications often work wonders for people.

Mental illnesses should be taught alongside other invisible illnesses. However, most people don’t understand invisible illnesses and probably will never understand – not even if someone close to them has one. You can’t understand what it’s like to have an invisible illness unless you actually have one.

I learned this myself the hard way.

A New Diagnosis

One thing that I left out from my update yesterday is that I was diagnosed with a new illness. I now have type 2 diabetes. It’s because of the Prednisone that my body has become so dependent on. A side effect is that your blood sugar can skyrocket while you’re on it and that’s exactly what happened to me. It was more likely to happen because I have several family members with both types, but mostly type 1. It was only a matter of time.

Basically, Prednisone is now hurting me more than it’s helping me, but if I’m to ever get off of it, I’m going to end up in the hospital again.

In the hospital, they had done a three month test on my blood to see if it’s been high for that long and it has. Well… I’ve been on the steroids almost constantly since March. I’ve been off of them for maybe a little over a week total since then. I literally can’t get off of this medication until I start on some sort of alternative that can suppress my immune system since Remicade didn’t work long enough.

Now that school’s started again, things have gotten kinda rocky with how my health can hold up. I feel like my friends expect me to keel over at almost any second with the questions of people asking how I’m doing.

I’m not really mad or annoyed or anything, obviously. I know it’s because they care or they’re curious to how I’m still even kicking. It’s just funny to hear them ask something and see their eyes saying something else as they look me over. Invisible illnesses are tricky like that. With a cold, you can see someone’s runny nose and pale face. With me, there’s just about nothing. At this point, you can only see the bruises on my arms as proof that I was in the hospital.

And maybe my hospital wrist band, if you’re looking for it. I’m still wearing that for some reason.

I’m now on a new medication called Janumet. My mom was on it for a while and she said it’s worked a miracle on her. I’m not sure what to think. She had my primary care doctor put me on it even though my doctor in the hospital suggested two other medications for me.

I guess it’s better for me that I’m taking one medication instead of two. I already breakfast on a steady diet of at least six medications to start off my day. Most of them horse pill sized.

One thing I’ve discovered, though, is that I need to eat before I take Janumet. It tends to make me a bit nauseous if I don’t. This makes my morning dose a little difficult because I’m not much of a breakfast eater.

I know, I know. Shh.

But I’ve taken this news pretty well since the 23rd of August. I had received news months ago that I had the mark of high blood sugar show up in a blood test. A second test was done, which confirmed the first test. Then a third test was done at my primary care doctor’s office, which had said that my blood sugar was normal. That test alone dashed my fears for several months, but here we are now with an official diagnosis for diabetes.

Watch out, world, this ulcerative pancolitic diabetic doesn’t have much left to lose.

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.