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!


Missing fresh air

July 18, 2016

I hate summer. I do. I hate it with a passion. Really, though, I just hate the weather.

Like so many others with chronic illness, my symptoms flare in hot and/or humid weather. That means I feel worse when the weather turns. Air conditioning helps. It doesn’t prevent or fix the problem, but it does cushion it a bit. So I spend a lot of time indoors with air conditioning.

But that’s incredibly limiting. I haven’t left my apartment in 2 days. Before that, I hadn’t left in 2 days. I used to stay home for days at a time because I felt like shit. That sucked. This simply sucks in a different way. I feel decent enough that I’d like to get outside. And at the very least I’d like to get some fresh air. When I feel lousy in October and can’t leave the house, at least I can open a window!

But now if I open a window the air is thick and stale and unpleasant to breathe. So I keep them shut. I go from my apartment to my car to a building to my car to my apartment and feel like I haven’t really gotten any fresh air at all. And really, I haven’t.

I shouldn’t complain. I’m really very lucky. This is the least horrible I’ve felt in a summer in many years. And at least I have air conditioning in part of my apartment! I am super grateful for that!!

Still, I’m frustrated. I miss going outside. I had been working hard to exercise more and I was taking walks just about every day. Now, I’ve probably taken 2 walks in the past month.

I’m counting down. I figure the weather should improve enough that I can open windows and go outside again in about 2 months. 2 months. 2 long months. In the meantime, I’m texting with my friend with chronic illness, who are also trapped indoors. Maybe I should invite them over. At least then we could be trapped together.


Getting good doctors isn’t about luck

July 16, 2016

I lied. It’s a little about luck. But mostly it isn’t. Mostly it’s about research and persistence and organization and all sorts of other things.

I have some really great doctors. I feel so lucky to have them. My friends with chronic illnesses say I’m lucky to have them. But the truth is, luck had little to do with it.

I’ve worked damn hard to get this line-up of doctors on my side, and I had to go through a lot of shitty doctors over the years.

First I spent years in a system where I could only see doctors within that group. Twice I got referred to specialists outside that group because they didn’t have anyone to help me, but each time I only saw that specialist once. And in hindsight, I realize that those specialists had really been on to something each time. Damn. My diagnoses got delayed for many years because I played by the rules and stayed in that group.

Then I moved, and I didn’t live anywhere near that group. Since I was a student (in graduate school) I was able to stay on my parents’ insurance, and since I was out of state I was allowed to see another doctor and insurance would reimburse me. I decided to use this to my advantage. It was a conscious decision.

Back then I thought that the pain was my only treatable symptom, so I went on a national arthritis group’s web site and saw that they mentioned rheumatologists. I’d never seen a rheumatologist, except for one of those outside, 1-time referrals, and all he did was rule out Lupus. Yes, I’d had more than 10 years of joint pain and hadn’t been examined by a rheumatologist. It sure was in a shitty system.

I found a list of local rheums, made a lot of phone calls, found one that my insurance would reimburse me for, and made an appointment. Within a few weeks I had my first diagnosis: autoimmune disease. Shameful that it took more than 10 years, but I finally had it! It wasn’t in my head!

I was lucky. I was also opportunistic.

A few years back it was obvious I wasn’t absorbing iron properly. I tried every type of supplement. I ate red meat and spinach. But my ferretin was still way too low. I asked around and researched and found a great hematologist. On my way to the appointment, I realized I never got a referral from my primary care physician! Without that referral, insurance wouldn’t pay for it. Damn! So I called up the office and they wouldn’t give me the referral because this doctor was at a different hospital and they got a lot of pressure to only give referrals to doctors at their own hospital. But I already had this appointment, I was in the car already headed over, and this guy was supposed to be really good. She wouldn’t budge. So I fired her. I immediately looked for a new doctor.

In case you’re wondering, when I arrived at the hematologist’s office I was basically in tears. I had waited 6 months to see this doctor, and now I didn’t have a referral. They called out their billing specialist from the back office. He was a nice guy and reassured me that they’d work it out. I saw the hematologist. He ordered iron infusions and they helped. The billing specialist also recommended his own PCP, who I switched to immediately. (That didn’t work out, but that’s another story.)

I didn’t liked my doctor, so I found someone else.

Years before that I wanted to see a specific endocrinologist, but my doctor wouldn’t give me a referral. I tried other doctors with no luck. So I reverse engineered it – I called that endocrinologist’s office and asked which doctors give referrals to him. His administrator wasn’t allowed to tell me that, of course, but she said that she could tell me that she and her coworkers all saw Dr. J and loved her, and that they recommended her. Sure enough, I loved Dr. J, and she gave me that referral to the endo.

I went to a lot of trouble to find a doctor who would give me the specific referral I wanted.

Now I just started with a new doctor who I love. I love the approach of his entire office. I love that we have conversations about my treatment as equals. I tell him about research I’ve read and he listens respectfully, then counters with his own argument. He’s glad that I debate with him. I wanted to see him years ago but I had doubts about leaving the hospital network I was in. I should have done it anyway. Now my PCP can’t read the notes or tests from my specialists and they can’t read his because they’re in different hospital networks. That means I have to be the one to ferry records back and forth. It’s a pain in the ass, but it’s worth it. I love this guy, and I’m certain my treatment will be much better. I waited longer than I should have, but at least I finally made the switch.

I took a chance and it was worth it. Sometimes it’s not, but I have to try.

I know that some people have fewer options. There’s only one specialist within 50 miles. Or their national health insurance assigns doctors to them and they aren’t allowed to switch. But I also know that sometimes we follow rules or conventional guidelines when we shouldn’t. Sometimes we have to find loopholes. Sometimes we need to ask for help. I have found many workarounds to the “rules” over the years.

It doesn’t always work out in my favor. I admit that. But I also know that almost every single health improvement I’ve had has been because I did my own research and pushed to find the doctors who would give me the tests and treatments that I felt I should try.

I have a kick-ass team of doctors now. But that didn’t happen by accident. I worked fucking hard to make it happen.

Lucky me.

What has your experience been? What will you do to make your own luck? Please share in the comments. We can learn through each others’ experiences!


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!


The guilt of not working on the “good” days

June 26, 2016

“Would get a job if you were feeling better?”

It wasn’t a doctor or a judge or a parent asking me this, but a friend who has chronic illness herself. I suspected her motives, but before I asked her about them, I answered her first. It’s not an easy question to answer, only because there are so many answers!

  • If I was feeling slightly better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better every day and thought it would last, I would consider working, but I’d try working for myself first. If that failed after 6 months or a year, then I’d give in and get a job.
  • But if I was feeling a lot better every day and didn’t think it would last, I wouldn’t get a job.

And those are just a few possibilities. And they don’t take the loss of my social security and other benefits into account because my friend asked me to discount them. When I felt a lot better recently I was already working on a project to earn money from home. And sure, I started thinking that I could put more time into it and stand a better chance of succeeding. But then in the blink of an eye I returned to how I’d been feeling before. But even when I was feeling better I wouldn’t have considered getting a job, not only because I don’t want to work for someone else if I can help it, but because how I felt was still unpredictable. Better to work on my own schedule from home and not worry about someone else’s timeframe or spending energy on commuting.

But that’s me, and everyone is different. My friend had been doing much better lately, so she felt like she *should* work. She didn’t want to, but she was supposed to. Her husband came home tired from work every day, while she got to be at home. On the days she felt horrible she felt bad about this, but knew it was necessary. But now she was having more good days and felt she should do more. But her good days were unpredictable, so how could she do it?

Of course, she’s not the first one to raise this subject with me. Many of my married friends say they feel guilty that their spouse is solely responsible for supporting the family financially. Sure, some couples choose to have one person work while the other does not, but that’s a mutual decision. When chronic illness and disability are involved, it feels like there’s no choice.

One financial downside to being single is that there’s no one around to bring in any money. On the other hand, I’m only responsible for myself and my own feelings, and that’s freeing. I still feel sometimes like I *should* work, but only in a general way, only because that’s the pressure that I feel from society overall, and not from anyone in particular. Not that my friend feels pressure from her husband. But she’s aware of his extra responsibility. No one is responsible for me but me. It’s not easier, just different.

For my friend, I suggested that she volunteer one or two days a week to test the waters. She said she’d been thinking the same thing. I hope it works well for her. I really do.

As for me, I hope to never have another job, but I sure would love to earn a living with my own business! I’m working on it slowly, putting in a few hours here and there when I can. It’s going slowly. It may never work. But I’m trying. So maybe that’s my answer to the question? I’ll just keep trying to earn what I can when I can, but in a way that doesn’t set back my health. And of course, that’s the hardest part of all.


Stretching boundaries, hitting walls

June 21, 2016

Eeek! It’s been almost 2 weeks since I’ve written and I miss it so much! The funny thing is, for the past few days I’ve been at a loss as to what to write, but today I find myself with too 2016-06-12 10.08.47many posts on my mind. The rest will have to wait for another day, because today I want to talk a bit about why I was gone for so long.

I love Massachusetts. It’s a fantastic place to live. But sometimes I just want to get away. I used to travel a lot. Ok, not as much as some people, but it was rare that I was in the state for more than a month or two at a time. Then I got sick. So yeah, that changed things more than a little.

Last month I wrote about my frustrations with not being able to travel. Lucky for me, the states here in New England are small, so I can travel between them somewhat easily. And that’s how I was able to go to Maine this month!

I’ll skip the details, because you’d probably find them boring anyway. The gist is that I stayed in a rented house on the shore with a bunch of family, including my parents, extended family, and 2 awesome dogs.

So I’m sure you’re wondering, how’d it go? Well, it was mixed.

I felt great when I arrived! The drive was under two hours, then there was a lovely boat 2016-06-14 17.25.17ride. I was greeted by family and we all had a nice time and a fun dinner. It was later that I felt horrible. Really horrible. Please-make-it-all-go-away kind of horrible. I’ve felt worse, of course, but this was still lousy.

Somehow, I finally managed to sleep. I slept terribly that night, but I did sleep just enough. I woke up at 5:30am. To me, that’s not morning. Anything before 6am is still night. But I was wide awake, the sun was streaming into my room, and I should hear the roar of the ocean outside my window. It could have been a lot worse.

I spent 4 days in Maine. That first night was rough. There was also a lot of pain. There were a lot of stairs just to get into the house. And I didn’t figure out until 2 days before the trip 2016-06-12 15.15.17that the reason my feet had been hurting was that I needed new sneakers. And there was some family-related stress.

But there were also bright skies and blue ocean. Even the drizzle was lovely. There were jokes and laughter. There was puppy cuddling. There were board games and walks. Sometimes I wanted to go on a walk with folks but I couldn’t. Other times, I could, but they had to slow down for me, or cut the walk short. Once I turned back early. Sometimes I went on drives. And it was all ok.

It was frustrating that I couldn’t do everything I wanted to do. Everything they did. Everything I used to do in the same coastal town when I visited just a few years ago.

On the other hand, check out these photos. I can think of worse ways to spend 4 days!

I was exhausted when I got home. I spent the night resting, watching tv, and checking in with friends. I had to rest the whole next day, too. The following day I felt barely well enough to go out for groceries, then I collapsed on the couch when I got home. Still, the 2016-06-12 19.25.54recovery wasn’t too bad.

I pushed myself. But I pushed myself carefully. I felt crappy some of the time but good most of the time and even great for a tiny bit. It will never be perfect, and right now that’s ok. I’m just thankful that I got to go at all. And I got to sit by the ocean.


Because I have chronic illnesses too

June 9, 2016

I have a problem setting boundaries. I know this, and I’m working on it, but it’s still a problem. The thing is, I like helping people, and that sometimes gets in the way.

Part of it is altruistic – I like seeing others benefit. Part of it is selfish: when I feel like there’s so much I can’t do in my life, it feels so good to do something that others find useful. But whatever the motivation, I have limitations, just like anyone else. I have limitations of time, ability, and energy. But on top of those, I also have limitations because of my health.

Lately this has come up a few times, and I’m handling it poorly. I know I could do better, but I’m not sure how.

We all have differently limitations and abilities, and that includes those of us in the chronic illness community. One person has more energy, another can climb stairs, another can walk more, another has greater cognitive function. It’s easy to forget that those abilities don’t preclude other limitations. I’ve been guilty of it myself. I see someone who walks a lot, and I forget that while they don’t have fatigue, they do have pain, for example. And now I’m on the receiving end of that.

I’ve been volunteering to help people in my chronic pain support group with a few things. I want to help, but I also have to be careful of my own limitations. I try hard not to commit to doing more than I can reasonably handle. The problem is, sometimes people ask for more. And that’s where the boundary issues come in.

Several times lately, people have assumed that I would do more than I had offered to do. I think they see me having certain abilities, and they forget about my limitations. Then when I say no, they ask why.

I offered to teach an informal class on using Facebook. There are so many great Facebook groups for people with all sorts of chronic illnesses, and I’d even set up a Facebook group for our support group. I knew a lot of people struggled with it, so offering a lesson seemed like a good idea. The problem was that several people said, “I can’t make it to that lesson, so when else can we meet?” I was stunned! I couldn’t give private lessons to everyone! Just that one class was exhausting. I didn’t leave the house for two days after that. But no one saw that part.

Finally I sent around an email saying that I’d be happy to give private lessons on a schedule that worked for me if people wanted to pay me. That ended most of the discussion, though one person still said she couldn’t afford to pay me but still wanted to meet because she needed help. I get that. I often need help that I can’t afford to pay for. So I don’t do it. I simply can’t help so many people. It’s not within my abilities.

I’ve been doing a lot of other tech support for the group. One person asked me to do some things and I finally said no, but that I’d be happy to show her how to do it. She asked why I couldn’t do it. I finally was direct: “Because I also have chronic illnesses and I don’t have the energy for it.” She said she’d find someone else to help.

I wasn’t trying to be rude or difficult or uncooperative. But I think people forget that doing seemingly easy things, like typing into a computer, can be downright exhausting for some of us. It can be painful for others. For some, it’s both. And just because I can do 10 things, doesn’t mean I can handle 11. Just because I can leave the house for 1 lesson doesn’t mean I can handle 5.

Many of my friends with chronic pain and chronic illness have visible illnesses. Mine isn’t visible unless you really look. You might notice a wince, a limp, or a stumble, but most of the time, I look just fine. So in some ways I understand why people forget and expect more of me.

Then again, when it’s someone with a chronic illness who asks me why I won’t do something extra, I just want to shout: BECAUSE I HAVE CHRONIC ILLNESSES TOO! JUST LIKE YOU!

Do you encounter this? How do you handle it? Please comment and let me know your experience!


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