Yes, I’m one of them

December 9, 2015

I was talking to some friends about some tough decisions I need to make about benefits. One of them said, more than once, that I might need them for a while, but those benefits aren’t meant for my “demographic.” They’re not for people like me. But the thing is, they really are.

I understand why she said it. We both grew up in middle class families in the same middle class neighborhood. We both went to college, then graduate school. We both got middle class jobs. We followed all the “rules” and now we’re supposed to have our happy middle class lifestyles. She is a stay at home mom. Her husband earns a very large salary. She has that middle class lifestyle.

I don’t.

There’s an idea that benefits are meant for other people. The people who aren’t middle class. The people who don’t have jobs. Well, as it turns out, that’s me.

Those benefits are for people with physical and mental illness. People who can’t work. Yup, me again.

People think they’re for people who are older. But they aren’t. They’re for people of all ages. Including people in their 30s like me.

My friend means well. She tries to understand. She is one of the only people in my life who knew me before I was sick, and she understands my health problems better than most. But she can’t accept that it’s permanent because she doesn’t want to. It hurts her to think of me in pain. I get that. I feel the same when someone close to me is in pain; I pretend it can’t be serious or permanent, even when it obviously is. That’s how she feels about me.

But it doesn’t change things.

So yes, I’m one of those people. The other ones. The ones who aren’t us. Except sometimes they are. Sometimes they’re one of us. Sometimes we’re one of them. It doesn’t matter if you grew up rich or poor or somewhere in between, whether you got advanced degrees or didn’t finish high school, you can be too sick to work. And when that happens, benefits like food stamps, Medicaid, and section 8 are helpful. Even when we don’t want them, we need them.

Like it or not, we’re one of them.

6 Comments | Expectations, Frustration, Insensitive, Isolation, Limitations, Politics, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , , , , | Permalink
Posted by chronicrants

Answering “What’s new with you?”

November 29, 2015

What’s new? It’s a simple, standard question. We all ask it and have it asked of us dozens or hundreds of times each year. Sometimes it’s like saying “Hello” and the asker doesn’t expect an answer. But sometimes they do. And sometimes, the answer is complicated.

I’m not talking about health stuff here. Well I am, but not directly.

When someone asks “What’s new?” sometimes what’s new is bodily issues. That’s probably true of anyone with a chronic illness. But sometimes it’s health-related stuff. When someone asks “What’s new?” should I tell them about my uncertainty about Section 8, fights with health insurers, problems with doctors, and about how I’m running out of room to store medical supplies at home? Should I explain my concerns around earned income and Social Security or the way that Medicare and Medicaid work together to cover costs but sometimes they fail, even when it means having to give a 20 minute explanation of the entire system just so it makes sense?

It’s like back in the days when I used to work. If someone asked me how work was going, I’d say it was good or bad, or maybe tell a funny story, but I wouldn’t talk about the boring issues with vendors or the technical aspects. I wouldn’t use terminology that I first had to define.

And that’s how it is with a chronic illness. Even when I’m not talking about my actual health, it’s hard to answer the question because so much of what’s happening in my life is health-related in one way or another.

So now I’m asking you: How do you answer the question, “What’s new with you?” Please let me know in the comments!

12 Comments | Educating, Expectations, Frustration, Isolation, Rants, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , | Permalink
Posted by chronicrants

Standing scared on the edge

November 20, 2015

It was always the same. The instructor was telling me to jump. I could feel everyone’s eyes on me. I knew it was safe. But I was terrified.

Some kids love jumping off a dock and into a lake. Those kids probably

5-9-2012 10-20-06 PM

Wish I could swim like these cuties!

know how to swim. Those kids probably aren’t scared of the unseen mysteries beneath the murky surface of the water. I, on the other hand, wanted to stay safe and dry on the dock. No such luck.

I did eventually learn how to swim. One day I was standing at the edge of a pool talking to someone, and a kid pushed me in as a joke. I had to be rescued. The next day, I finally learned enough to stay afloat. But in general, I’d rather learn how to stay afloat without feeling panicked as I sink to the bottom of a pool.

Now I’m standing at a different kind of edge. It’s just as safe (mostly but not completely) and just as terrifying (very.) I’m about to start a small business. I decided to do this months ago, but I wasn’t committed to it. This week I decided to commit fully to giving this a try. I might fail, but I have to try.

I still don’t feel like I can commit the kind of time necessary for this. I know someone who has a new baby and works a full time job and is starting a similar business, yet she’s finding the time. But then, she doesn’t have brain fog, chronic pain, chronic fatigue, and a huge number of medical appointments to deal with. Still, I should be able to put in at least a little bit of time.

Ok, I know I’m being a bit vague about the business. That’s partly because I want to maintain my anonymity here but also because it’s really irrelevant. I plan to write and sell a short book (I’ve written the first draft but still have a lot of work to do on it.) I’ll create a blog. And I’ll try to sell the book and other things (maybe an online course?) to people. The key is that I’ll be working my own hours. It will take twice as long for me as it might for someone else, and I have to be ok with that. I might plan to work 3 days this week and manage 5. Or it might end up being only 1. Or none. And that will be ok.

I’m worried about the impact on my benefits, especially social security, at the beginning. But then, I also know that I can’t survive on benefits indefinitely. Right now I’m taking money out of savings each month to make ends meet. That’s fine for now, but one day those savings will run out, and then how will I get by for the next 4 decades? No, it’s better to not have to be on benefits at all, to cover my own expenses with my own business. So I’m going to try.

I face my fears every damn day with these illnesses. I worry about my health in ways most 30-somethings never even consider. It’s time to face a different kind of fear and take the leap. I don’t know how to do this, but maybe I’ll find a way to stay afloat anyway.

 

3 Comments | Decisions, Expectations, Fatigue, Job, Limitations, Milestones, Pain, Raves, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

When those horrible medical symptoms aren’t medical at all

November 14, 2015

There’s a tipping point. It’s the moment when you feel something odd in your body and just assume that it’s related to your chronic health condition. Before the tipping point you question what it could be. But after that point, you just assume.

Of course, sometimes it’s a medical problem that has nothing to do with a chronic illness, like an injury or the cold that’s been going around.

But sometimes it isn’t medical at all. And then don’t we feel a bit silly? It’s a good reminder, though, that not every odd bodily feeling is part of a chronic illness.

The other day I was really cold. My body doesn’t adjust to temperature changes well. I also have Raynaud’s, and my hands were very white with tinges of blue. I was starting to feel lethargic. For a while I wondered what I had done to stress my thyroid or adrenal glands. But eventually I noticed that my radiators were cold. I checked the temperature in my apartment and it had dropped. I emailed my landlord and, sure enough, there was a problem with the heat that they were working to fix. Huh. I was looking for thyroid and adrenal triggers and it was really a busted boiler. Oops!

Sometimes my vision gets blurry. I used to always worry about what could be causing it. All sorts of terrible scenarios would run through my head and I’d be very nervous. Now I know better and I immediately check the two most likely culprits: it’s always either a smudge on my glasses, or I forgot to switch my reading and distance glasses when I walked away from the computer. Oops!

What about you? Have you thought you were having some horrible symptoms only to find out that it was something completely benign and non-medical, like a smudge on my glasses? Please share in the comments! I think we could all use a little comic relief and the reminder that not all “symptoms” are medical.

4 Comments | Expectations, Raves, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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