Summer hibernation

July 31, 2016

When you have chronic illnesses, your body overrides the calendar. At least, mine does.

When summer rolls around here in Boston, everyone starts going outside more. They’re biking, hiking, swimming, or just strolling around. There are out concerts, outdoors Photo 1picnics, and ourdoors festivals. People stay outside as much as possible. Except me.

Then winter comes, and people are staying indoors (unless they’re skiing) and avoiding the cold and the snow. Except me.

Unfortunately, I’m on an opposite schedule. I love the long daylight hours of summer and the sidewalks that are clear of ice, but my body just can’t handle the heat and humidity. My pain gets worse, my fatigue gets worse, my stomach gets upset. I just feel crappy overall.

But winter is different. I hate the 4pm sunset. I can’t stand the snow and ice that make it hard to walk around. But I feel so much better! I can breath better. I have more energy and less pain. Life is better! Except for my social life, that is.

Because while everyone is going out now, they’re doing things that I simply can’t do. Even 2015-02-10 15.16.52the indoor things are a problem, because with the worse symptoms, it’s hard to get places and do things. In the winter I’ll be able to do more, but there won’t be anything to do – everyone else will want to stay home. I’ll invite them out, like I do every winter, and they’ll turn me down, like they do every winter. I don’t entirely blame them. I understand the desire to spend a snowy Saturday at home with a good book and some tea. The thing is, though, I have to make up for my lost summer months! And I need to get out while I can, before summer comes around again, all too soon.

I’ve written about this before, I’m sure. Every winter I’m frustrated when everyone stays in, and every summer I’m frustrated that I can’t go out.

Now it’s the latter. Today is a cooler day, but it’s humid, so I’m in more pain. Last week it was hot, so I stayed near the air conditioner. I miss people. I miss the outdoors. I miss taking a short walk. I’m an introvert and I do well on my own, but after 3 days, I want to be around other people. And I’ll be honest, I’m sick of my living room.

Sometimes I feel bad about complaining, but I know that many of you know exactly what I’m talking about. And anyway, this blog is called Chronic Rants, after all!

Exactly the same and completely different 5 years later

July 27, 2016

birthday-cake-1320359_1280Happy birthday to us! Last week was the 5 year anniversary of Chronic Rants. And when I look back, it’s hard to believe how much has changed and how much has stayed the same over the last 5 years.

I still have the same symptoms as I did then, it’s just the severity and frequency of various symptoms that has changed. I no longer work full time at an office, but I am trying hard to start a small online business that I can do part time from home. I still encounter all sorts of ableist bullshit, though it’s usually in different ways than before.

I suppose the biggest change is my perspective. 5 years ago I was struggling, but I assumed that I would continue working. I assumed my health would continue to slowly get worse. Little did I know that just a few short months later I would be leaving my job for a “temporary” break that would become permanent. I had no idea my health would get so much worse so fast.

But this blog has also helped to change my perspective. Writing about my illnesses has taught me a lot. Talking to you through emails and comments has taught me more.

I stand up for myself even more than I did before.

I am more aware of other illnesses, other medical systems, other cultures surrounding illness and disability.

There are many chronic illness blogs out there. I read a few before I started writing my own, and I have found many more over these last 5 years. The online communities are so important for all of us.

Now I wonder where I’ll be in another 5 years. Will I have finally found my fur baby? (I’m really hoping that will happen in the next year!) Where will I be living? How will my health be? Will I be able to travel again? Will I be working? Will I be on benefits? Which symptoms will be bothering me the most? Which will be worse? Which will be better? I have so many questions, and all I can do is work to push my life in the direction I want it to go and hope it goes at least a tiny bit according to plan.

Thanks for joining me on this awesome journey!

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!

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