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

Freaking out about the possibility of Section 8

November 27, 2015

Life has never been easy or predictable. At one point I thought it was, but back then I assumed I’d have my PhD, be married and have kids by the time I was 30. Now I’m well past 30, I haven’t spoke to that guy in 13 years, there are no kids, and I never did finish the PhD. I have no regrets. I’m just saying, life is unpredictable.

And in case I dared to forget it, the last few hours have reminded me all too clearly.

Life has been less certain than ever since I left my job 4 years ago. I can’t believe it’s been that long. Still, after a ton of work and effort, research, new doctors, new treatments, and fighting with insurance companies, I finally reached a point where I felt I might be able to do a little part time work. I was nervous, but also hopeful. It would be so nice not to have to worry about being on benefits that didn’t cover all the bills.

Today I did some work on that new business. I was feeling really excited about it! At 4pm I was jazzed, telling my mother all about my new plans and progress, outlining some next steps for myself, and imagining the possibility that this might actually work! At 5:30 I decided to check the mail. At 5:35, everything changed.

I had an unexpected letter.

I’m near the top of the waiting list for Section 8, so they want to start getting my paperwork ready and have an interview with me. Holy fuck! What just happened???

For those who don’t know, Section 8 is a housing voucher program. If you earn less than a certain amount, you’re eligible. Typically, you then pay 30% of your rent and the government pays the rest. There aren’t a lot of vouchers and the waiting list is long. When I signed up, I was told the wait was 3-4 years, so I put it out of my head. Whenever it popped back in, I reminded myself that I had a long wait and shouldn’t plan for it. And now, a year and a half later, it seems like it could soon be a reality. Sounds good, right?

Of course, like with anything, there are a few catches. For one thing, if you start earning more, then you lose the Section 8, and I don’t know what happens then. Would I have to move? And to use it in the first place I might have to move, and my choices would be very limited. Not all landlords accept Section 8 vouchers and I don’t know if mine does. Many don’t. Then there’s the problem that there are rental limits, and they’re pretty low for this area, so that makes it significantly harder to find a place.

Of course, this is just what I’ve heard and read. The truth is, I don’t know a lot. I have so many questions, but I got the letter at 5:30pm on a Friday, of course, so I need to wait all weekend before I can call and ask any of them.

So now I’m wondering, is this a good thing? It seems like it should be a good thing. If I’m doing the math right, this would mean I could almost cover all of my bills every month! There would be a small gap, maybe $50-$100 per month, but I could handle that. I get paid for small jobs here and there, and I get birthday and Chanukah checks, so I’m sure that wouldn’t be a problem. And would it be amazing to not have to worry about money?!? Ok, sure, I still wouldn’t have anything extra. It’s not like I could suddenly start eating out more, buying more clothes, or traveling. But it’s not like I really have to do any of those things anyway. So…. maybe this is good?

I’m nervous. I’m so used to things going wrong that it feels like there must be a big catch here that I’m not seeing yet. But then, what if there isn’t….?

If you’re on Section 8, what has your experience been like? What questions should I be asking? What should I know?

 

3 Comments | Expectations, Politics, Rants, Raves, Unpredictable | 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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