The pain of going to the movies

July 23, 2016

I think I went to the movies once last year. Or maybe it was the year before. When people ask, I say that I don’t like going to the movies because of the cost, or because there’s nothing good to see. Those things are true, but they aren’t the real reason. They’re just easier to talk about.

The truth is that even when there’s a movie I really want to see and someone else has offered to pay, I still decline. Because no matter how good the movie is, it won’t be worth the pain of seeing it.

To be fair, I haven’t tried the new reclining seats yet. Maybe those would be better. But regular movie theater seats are very uncomfortable. Plus, there’s the problem that I have to sit in one spot for over 2 hours!

Friends have suggested that I sit on the aisle so I can get up during the movie, but I can’t imagine that going well. The people around me would not be too happy if I was getting up, walking around, and stretching during the movie, and I wouldn’t blame them! I could sit in the back row on the aisle…. but only if the seat wasn’t already taken. I’d have to arrive really early to be sure. That would mean even more time in the theater.

And again, it’s just not worth it. Sure, I could arrive really early and sit in the back row on the aisle, even if the people I was with didn’t want to sit there. I could get up during the show to stretch and walk around. I could leave the theater and walk up and down the hallway. I would miss parts of the movie. I’d be distracted. And in the end, I’d still be in pain. So please remind me, why exactly would I want to do this? What would I gain?

I have missed a lot of “great” movies in recent years. And I don’t regret it at all. When I think about what’s missing in my life, “going to the movies” isn’t anywhere on the list. It doesn’t even come to mind. When I think about the things I’d like to do in the coming months or years, again, “going to the movies” isn’t on the list. There are too many other things I’d rather be doing.

I do watch movies, though. Sometimes I watch them on tv. I have a lot of dvds that I rarely even find time to watch. I can get movies from the library.

The difference is that I can watch them all from the comfort of my own home. I can pause them when I need a break. I can get up and move around as needed. I can sit more comfortably. I can reposition myself as needed. I can stop halfway through and finish the rest the next day. This all makes it totally worth it.

But going to the theater? Not at all.

[Side note: I’m going to the theater tomorrow to see someone I care about perform the lead in a play. I know I’ll be in pain, but I believe it will be worth it. Wish me luck!]

What about you? Are you able to go to the movies? Is there something similar that you skip out on altogether because you feel it isn’t worth it, even though people insist you should try anyway? Please comment and share your experiences!

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , | Permalink
Posted by chronicrants

Cooking without a stove

July 1, 2016

I’m lucky. I have a fairly decent kitchen with a stove and oven that work well. I’m thankful to have them! Still, when the heat and humidity of summer come along, I can’t bear to turn on the oven at all, and I rarely use the stove. But a girl’s gotta eat! What to do?

Whether you’re heat sensitive like me, you don’t have a stove, or you’re just not a cook, I bet you can relate to my dilemma. I can’t eat out much. It’s not good for my health or for my wallet. Ditto for frozen convenience meals. I eat salads and sandwiches, but I get tired of those long before the cooler weather returns. So I’ve gotten used to cooking without the stove.

I was thinking about this last night as I prepare burgers, fries, and steamed veggies. It wasn’t too hot, so I could stand to be in the kitchen (which doesn’t have air conditioning,) but it was warm enough that I wasn’t about to turn on the stove. So instead, I cut up some potatoes and put them on the toaster oven pan with salt, pepper, and olive oil. Then I put them in the toaster oven set to bake at 475 degrees. Voila: Roasted potatoes!

The vegetables were easy. I put some frozen green beans into a bowl, covered it, and microwaved it for 2 minutes.

The burgers were easy because I had a Griddler. This was a very nice gift last year. A George IMG_20160701_102445.jpgForeman Grill would do the same job, I assume. It emits some heat, but not as much as a stove and a hell of a lot less than an oven. I put some garlic, scallions, salt, and pepper into a bowl and mixed it up, then added the beef. I made 4 patties, put them on the Griddler, set the timer on my phone, and sat on the couch to rest.

Dinner was delicious, healthy, and didn’t heat up the apartment!

A friend gave me the idea of making rice and black beans, then throwing avocado and salsa on top. Yum! Since I don’t have a rice cooker, I do have to use the stove for that. The good part is that I don’t have to be in the kitchen! I try to make rice on a cooler day, and I leave the kitchen while it’s cooking. It’s not perfect, but it mostly works.

And then there’s my favorite: the crockpot, also called a slow cooker. This was an excellent housewarming gift a few years back. A friend introduced me to a series of crockpot cookbooks, and I found the author’s website. It’s filled with delicious recipes that can all be made gluten free!

I’m a huge fan of my crockpot. You throw in the ingredients, set the timer, and walk away. IMG_20160701_102502.jpgWhen you come back 3-10 hours later (depending on the recipe) your food is all done! There’s something so great about tossing in ingredients, going out for the day, and coming home to an apartment that smells amazing. Again, it emits some heat, but not much. And I don’t have to be in the kitchen while it’s on.

Unfortunately, I do have to be in the kitchen without air conditioning while I do dishes, but at least the stove and oven haven’t heated up the space!

This isn’t perfect, but it gets me through the summer. If you struggle to cook without a stove and you have relatives who sometimes ask you want you want for your birthday or for Christmas (or who might be open to some hints) maybe a kitchen gadget is the way to go.

What about you? Do you have favorite meals that you can make without turning on the stove? Please post them in the comments – I can use all the ideas I can get!

2 Comments | Fatigue, Limitations, Pain, Raves, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

It’s about more than just pee

June 5, 2016

There’s political turmoil in the U.S. right now around bathroom use. Yes, you read that right. Transgender folks want to use the bathroom that corresponds with their gender identity and conservatives want them to use the bathroom that corresponds with the gender on their birth certificate. While I have some very definite opinions on this issue, there’s one aspect that strikes me as being more relevant for those who have certain chronic illnesses and other medical issues. Or who just poop when they’re not at home.

You see, the argument from transgender folks and their allies is that this is about a simple right: the right to pee. And it is. But it’s also more than that.

I see a lot of these memes, videos, and arguments. I share a lot of them on social media, too. After all, I fully support everyone’s right to pee in a comfortable, safe space. But the thing is, isn’t it about more than just pee? And I’m not just talking about having a private place to pick a wedgie, fix your hair and makeup, or take off those uncomfortable stockings.

For me, public bathrooms, and even private ones, were about more than just peeing. I had around 20 years of undiagnosed Celiac Disease and other food intolerances, so you can imagine what bathroom use was like for me.

I have an unusually strong bladder. I can often go for 4, 6, even 8 hours without peeing. But when I got *that* feeling, there was no choice.

There was the time I was on the highway, stuck in traffic. I got *that* feeling. I knew it was bad. I looked at the stop-and-go traffic and I wondered if I would have to have diarrhea in the grass on the side of the highway. Thankfully, just in time, I got off the road, into a motel parking lot, and found my way to a bathroom. Thank goodness!

Then there was the time I was seeing a show on Broadway for the first time. I was so excited! Walking to the theater, I got *that* feeling. We rushed to the theater, thinking I could quickly use the bathroom, but the doors weren’t opened yet and there was a line to get in. I rushed to the hotel next door, but a guest card was needed to use the bathrooms. I asked at the desk, but they wouldn’t let me use a toilet. I went back to the theater. The doors were open and my mother was almost to the front of the line. I was desperate. As soon as I was through the door I ran to the bathroom. The line for the ladies room snaked down the hall. I ran to the front and asked if I could cut the line. A woman in front said yes immediately, and others followed her lead. I hate to think what would have happened if she’d said no. Maybe she saw the desperation on my face. Maybe she noticed that I was turning a bit white, or even green. Maybe she was just a compassionate person who always helped others. Whatever it was, I was grateful. I ran into the next open stall, and sat down as I felt what seemed like everything I’d eaten in a week leave my body. I was there for a long time. I eventually made it up to my seat, and was still feeling a bit ill. Before the show started, I got the feeling again. I ran back to the bathroom. It was close to curtain, so there was no line. I sat there alone, in the quiet, grateful for the toilet. I got back upstairs just as the opening number began, thankfully feeling much better.

I’ve had more incidents like this than I can count. There have been times I didn’t make it to a toilet in time. Thankfully, those were not in public places. But they could have easily been.

The point is, sometimes it’s about more than just peeing. I’m cisgender, so obviously this particular issue of which bathroom to use doesn’t affect me directly. (It does affect several friends, many acquaintances, and countless people I don’t know personally but who should obviously have the same rights as everyone else.) Still, I can’t help feeling a twinge at all of the talk about how “it’s just about peeing.” No it isn’t! It’s also about pooping! Don’t forget the pooping!

I want to shout it at the tv, at my computer screen, and at every person who says, “it’s just about peeing.” I get their angle. They want to eliminate the politically-motivated distractions being used to force the issue. But let’s not erase the very real problems that so many others are dealing with. It’s about pooping too!

There are certain things all humans do. I get that most people don’t want to discuss them all. But really, why can’t we talk about poop? If we can wipe a baby’s butt, clean out the cat’s litter, and pick up the dog’s poop from the street, surely we can recognize that trans+ folks will need to occasionally poop in public too. And when they do, they need to be able to do it in a safe place.

Because if I hadn’t had a safe place in that theater, it could have been a very messy experience. And no one should have to go through that.

So for all of you out there with IBD, IBS, Crohn’s, Celiac, or any other digestive issue, and for those who simply need to poop, I support you. Let’s win this thing! #itsaboutmorethanpee

4 Comments | Educating, Expectations, Frustration, Gastrointestinal, Isolation, Limitations, Pain, Rants, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

Having a chronic illness isn’t brave

June 3, 2016

I have seen many brave things, either personally or on the news. I’ve even done a few myself. Having a chronic illness is not one of them!

I hear it all the time, and I’m guessing you do, too. It’s some version of “You’re so brave to deal with all of that!” or “She’s so brave to be in that wheelchair.” Oh really?!?

The last time I checked, bravery had to do with making a choice. You make a choice to put someone else’s safety above your own. You make a choice to do something scary. That’s brave. Depending on the situation, it might even be admirable.

But I didn’t make a choice to have chronic illnesses. Most people don’t. They don’t make a choice to use a wheelchair or walk with a limp or lose their vision. These are the realities of our lives and we deal with them the best we can, but we don’t chose them.

The argument then is that I’m brave for the way I handle it all. Again, I must ask: oh really?!?

What are my options? Yes, there are other ways I could handle this. And let me tell you, it wouldn’t make a difference. I’ve been called brave for putting on a smile and pretending I’m fine. I’ve been called brave for crumbling and saying that I feel like I can barely manage it. I’ve been called brave when I look completely healthy. I’ve been called brave when I’m in a wheelchair and the pain shows clearly on my face. It doesn’t matter how I handle my illnesses and their symptoms, at some point someone uses the B word.

You might wonder why I care. And the truth is that mostly I don’t. Most days I don’t even think about it. But in the moment when someone calls me brave, I bristle. When I see someone else called brave for simply being, I bristle. It bothers me because I don’t want to be put on a pedestal. I don’t want to be thought of as special or different. I want to be seen and recognized for who I really am and for what I really deal with.

This shit is hard! And I’m not special. I have to deal with it the same way anyone else would. Saying I’m brave implies that I have some special skills or personality trait that makes it easier for me to handle everything. “What a difficult thing to deal with, but she’s so brave, look how well she’s handling it!” No, I am not handling it in any special way because I’m brave. I’m handling it the best I can because that’s all any of us can do. Because that’s what I’m sure you, dear speaker, would do if you were also in my situation.

I look around the room at my many friends with chronic illness. Some have had dozens of surgeries. Are they brave because they had dozens of surgeries they never wanted? Some have kids. Are they brave because they had kids? Some weren’t able to have kids. Are they brave because they weren’t able to have kids? Some have jobs. Are they brave because they have jobs? Some can’t work. Are they brave because they can’t work?

Or are they all just doing the best they can?

Because really, what’s the alternative?

But the worst part of all is that sometimes, in a small part of me I don’t like to admit to, I feel proud when someone calls me brave. Because in that one small way, it’s a tiny bit of recognition of just how hard I work to get through each day. And maybe that means I’m a bit brave after all?

How do you feel when someone calls you or someone else with chronic illness “brave”? Do you like it? Does it bother you? Please comment below!

20 Comments | Educating, Expectations, Frustration, Insensitive, Isolation, Limitations, Pain, Rants | Tagged: , | Permalink
Posted by chronicrants

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