Choosing to stay home vs. being stuck at home

December 23, 2014

If you’re a spoonie, you probably know what it’s like to be stuck at home. And maybe you sometimes get to choose to stay home. They’re very different.

For most of the last few years, when I was home it was because I was stuck at home. If I felt up to going out, I did because I knew I had to take advantage of the limited opportunity. But lately I’ve been feeling a bit better and I’ve been choosing to stay home. I’d sort of forgotten what it was like. I’d had a lot of time at home before, but this is different, and I’m still learning the ways that it’s different.

When I’m stuck, I want to go out, or to at least have the option to go out. When I can choose, I often don’t want to go out and have to talk myself into taking a walk or running errands, just to get fresh air and exercise.

When I’m stuck, I’m often lonely. When I can choose, I appreciate the quiet solitude of being home alone.

When I’m stuck, I’m sad to miss out on social events. When I can choose, I feel less bad if I miss those events.

When I’m stuck, my apartment feels small and cramped. When I can choose, my home feels warm and cozy.

When I’m stuck, I’m bored and can’t do much beyond watch tv and read a bit. When I can choose, I often feel well enough to work on hobbies, cook, clean up the clutter, and also read and watch tv (not all on the same day, though.)

When I’m stuck, I feel sad. When I can choose, I feel content.

When I’m stuck, I’m very aware of the pain and fatigue. When I can choose, the pain and fatigue are obviously less, and feeling better allows me to mostly ignore the pain and fatigue that remain.

When I’m stuck, I spend a lot of time on social media, trying to connect with the outside world. When I can choose, I spend more time doing things on my own.

When I’m stuck, I think about the things I can’t do. When I can choose, I focus on the things that I can do.

When I’m stuck, I make plans for a future that seems remote and unlikely. When I can choose, I make plans (the same plans, by the way,) for a future that feels foreign but possible.

When I’m stuck, I go out every chance I get. When I can choose, sometimes I go out and sometimes I stay in.

When I’m stuck, having company is thrilling. When I can choose, sometimes company is nice and sometimes I’d rather stay home alone.

When I’m stuck, I am very aware of being stuck. When I can choose, I’m very aware that I have a choice. And I’m so incredibly grateful to have that choice.

7 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Raves, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

How does blocking a handicapped parking space help those selfish people?

December 22, 2014

I’ve written several times about how annoyed I get when someone illegally parks in a handicapped parking space. It’s rude, inconsiderate, selfish, and inexcusable.

So you can imagine how I feel when I try to park in a handicapped space, only to be blocked not by a car, but by a Handicapped Parkingshopping cart. Yeah, I get pretty pissed.

Yesterday I went to a new grocery store. There were two carts in the handicapped space! Luckily they were to the side and I drive a small car, so I was able to fit into the extra-wide space. Still, it was so wrong! And yes, there have been times when I have had to drive past the space, because I don’t have the energy or I am in too much pain to get out of my car, walk over, move the cart, get back in my car, park, then continue with my errands. This time, I was with someone, and we each took one cart on our way into the store.

Then I came back to my car, only to find a new cart that someone had left between my car and the small island of dirt and grass! What the fuck?!?

There is absolutely no excuse for this! If you are able to walk as far as that space and put the cart between my car and the grass, then you could walk a few more feet to the cart return. Yes, there was a cart return, and it was just across from my car. And if there was no return, there would still be no excuse for leaving a shopping cart there. Leave it in a non-handicapped space. Or, you know, do the decent thing and bring it back to the store!

I try to the assume the best in people. I really do. But these are the things that make me cynical. These are the things that make me wonder how someone can be so unbelievably self-centered that they either don’t realize or don’t care that they are making things so much harder for someone who probably already has to exert a whole lot more effort to go to the grocery store.

I complained to a worker and asked him to tell the store manager. He said they were aware of the problem. Obviously, there’s nothing they can do. So I say we do something! When you see someone doing this, let them know how despicable they are being. Let’s shame them mercilessly. And maybe, if they are embarrassed enough, it might occur to them that the best way to avoid being shamed and embarrassed is to, you know, be a decent human being.

4 Comments | Educating, Frustration, Insensitive, Parking, Rants | Tagged: , , | Permalink
Posted by chronicrants

I’m done being the go-to sick expert at parties

December 15, 2014

It’s my fault, really. Someone asks me a question and what do I do? I answer it! What am I thinking?

The thing is, I’m happy to answer that one question. The problem is that it’s never just one question. One question leads to another and before you know it I’m talking about health issues for half an hour at a party where I was excited to get out of the house and be around other people so that I could forget about my health issues.

It doesn’t happen every time, but it happens too often. It happened last night. And I’m done.

Last night started simply, with one person asking a group of us if anyone had experience with CPAP machines, because he was having trouble with his. So of course I talked to him about my experience and tried to help him troubleshoot his issues. But as usual, two things happened that I hate.

First, this guy was all excited to have someone to talk to about this stuff, and wanted to delve into details. I saw him get that way people get when the suddenly see me as a potential mentor, teacher, or whatever. He even friended me on Facebook later, even though we’d only had that one conversation about health stuff. We know nothing else about each other. But based on that conversation, he wants to talk to me more.

Second, two more people joined in, even though they couldn’t really help. One knew nothing about sleep apnea but wanted to suggest we both try herbal medicine. The other knew a bit about sleep apnea and treatments because a friend of hers has it, so she told us what she’d heard from her friend. It’s nice they wanted to help, but they kept interrupting a conversation between two people who actually have the medical condition to offer their unfounded opinions. That prolonged my conversation with this guy, and it also made it harder to break away. Suddenly, it was a group conversation that was taking on a life of its own, so it was harder to end.

Thankfully, a friend came by, and I did something I don’t usually do. I ignored everyone else and started talking to my friend about something completely off topic. I think I asked him about his work or his holiday plans…. I honestly don’t remember. What I do remember is that the guy with the CPAP questions tried to talk to me again, and I ignored him. It was rude, but I considered it self preservation. In the past I would have answered him, and then I’d have gotten sucked right back into that health-related conversation and it would have ruined the rest of my night. I didn’t have any more suggestions for that guy, so we would have just been discussing what we’d already covered, but in more detail. This way, we all ended up talking about something else. I don’t know how anyone else felt about it, but I was much happier!

Last night was a big success, so going forward I’m going to keep doing that. I’ll still answer a question here or there, but when someone asks about my inability to eat gluten at a party, I won’t end up in a half hour conversation about Celiac Disease, how I figured out I had it, where gluten hides, blah blah blah. Nope, I’ll just promise to send them some useful links so they can read about it themselves and I’ll move on.

Don’t get me wrong. I’m still all about education. If someone thinks they might have Celiac, for example, I’ll gladly try to help them. But maybe not at a party. Maybe not when I’d rather be thinking about another other than my health. There’s a time and a place, and I think it’s about time I choose both.

Do you have this problem? Do you get sucked into health-related conversations at gatherings? How do you feel about it? How do you handle it?

9 Comments | Decisions, Educating, Expectations, Frustration, Insensitive, Intrusions, Rants, Symptoms | Tagged: , | Permalink
Posted by chronicrants

“You’re too poor to see that kind of doctor”

December 13, 2014

I’d like to see a functional medicine doctor*. It sounds simple, but that sentence has complexities beneath the surface.

If I said I’d like to see an eye doctor, it would be easier: I would make an appointment with one of the dozens of eye doctors in my area who take Medicare and MassHealth. I would get my eyes checked and my insurance would pay the bill. Simple.

Of course, not every doctor takes insurance. Well, maybe I shouldn’t say “of course,” because a few years ago I just assumed they all did. And now, I’m surprised when a friend questions me. “What do you mean they don’t take insurance? Don’t all doctors take insurance?” Um, no, they don’t actually. Still, even if one rheumatologist doesn’t take insurance, another one will. The ones with the focus I want might not take insurance, so I might still be stuck, but it will be in a different way.

You would think it would be that way with every specialty, but it’s really not. When it comes to functional medicine, the entire specialty seems to be out of reach. I found several functional medicine doctors in my area who are highly recommended. Some don’t take any insurance. Others take a few select types of insurance. Most don’t take Medicare. One takes Medicare, but not MassHealth, and he works for a concierge service that charges an additional $365 per year. Medicare would cover 80% of the bill, but without MassHealth, I would have to pay the other 20%. That could easily be $150 per visit. On top of that I’d have to pay the $365 per year. And many of his tests aren’t covered by insurance, so I would have to pay for those, too.

Hanging out with a bunch of other people with chronic illness and chronic pain this week, I asked if anyone knew of a functional medicine doctor around here that take both Medicare and MassHealth. someone immediately responded, “You’re too poor to see that kind of doctor.” Normally I would try to argue with her, but this time, I’m afraid she might be right. I just can’t seem to find a functional medicine doctor who takes my insurance and without that, how can I afford to go?

I’ve gotten my medical expenses down. Thanks to a relatively low insurance premium and almost no copays, I’m paying only $500 or so every month. Of course, that includes visits to my naturopath, who isn’t covered by insurance at all. If I went to a functional medicine doctor it would have to be instead of my naturopath, and I’m not willing to make that tradeoff right now. Yes, a functional medicine doctor could order tests that a naturopath can not in my state. But I have a good relationship with my naturopath. I trust her. I’m not willing to throw that away to take a chance on someone new right now.

So once again, I see money (or a lack thereof) throwing up a roadblock in my journey to recovery. And once again, I remember how incredibly lucky I am to be able to pay for a naturopath right now. I know that many, many others are not so fortunate. Still, it’s so frustrating to see so many potentially helpful doctors who are just a different form of insurance away.

*If you don’t know what a functional medicine doctor is, check it out. I haven’t seen one myself, obviously, but I’ve heard good things.

If you’ve seen a functional medicine doctor, what has your experience been? What kind of medical care has been restricted by your lack of funds? And if you know of a functional medicine doctor in the Boston area who takes Medicare and MassHealth, please let me know!!!

10 Comments | Decisions, Expectations, Frustration, Healthcare, Limitations, Medication, Rants | Tagged: , , , | Permalink
Posted by chronicrants

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