What a difference a parking spot can make

February 6, 2015

I should be out doing things today. I should at least be doing things around my apartment. Instead, it’s noon, I’m in my pajamas, and I’m having trouble finding the energy to do anything remotely useful. Why? Because of parking problems.2015-01-28 08.31.11

Parking is a problem in a lot of cities. It’s so inconvenient that I briefly considered going car-less a few years ago, but the reality is that there were just too many days, even when I was healthier, that I could walk to public transportation. So I kept my car. Which means I always need a place to put my car.

Boston has gotten a lot of snow recently – about 40″ in the last two weeks. And we’re do for another foot or two in the next few days. In a city of narrow roads, this greatly restricts parking. My neighborhood has parking on both sides of the street normally, but right now there’s only enough room to park on one side. That means that every time I drive, I worry about giving up my parking space.

Two days ago, I came home tired, then spent 1/2 hour looking for a parking space. By the time I got to my apartment I was too tired to cook dinner.

Yesterday I decided to take the bus instead of giving up my parking space. I took the bus, walked, walked more, took the bus, and took another bus. I was exhausted. I did everything I needed to while I was out, but it was tiring. Then I waited for the last bus for 30 minutes in wind chill temperatures around 10F. That didn’t help. Again, by the time I got home I was too tired to cook dinner.

Today I’m resting. If I had driven yesterday, I’d probably have the energy to do the few things I’d like to do today. I could go to the post office, cook, and generally feel decent. Instead, I feel lousy. And why? Because I didn’t want to give up my parking space.

I’ve thought about moving several times over the years, but this may be the last straw. It may be time to move now. I’ve tried to put up with the parking stresses, but last week I didn’t go out because of it, and that wasn’t good for my emotion health. This week I did go out and it wasn’t good for my physical health. Shouldn’t I live someplace where I can go out when I need to and come home when I need to? (By the way, parking can be tough even when there’s no snow on the ground. The snow just makes it that much harder.)

So I’m looking for a new apartment. In fact, that’s what I was doing when I took the bus yesterday. I’ve seen a couple places that are close to what I want, but not quite. I’m still looking. It’s a tough market, so please wish me luck!

And hopefully, by next winter, I will have an apartment with my very own, off street parking space. Oh, what a luxury that would be!

2 Comments | Decisions, Fatigue, Frustration, Isolation, Limitations, Pain, Parking, Rants, Symptoms | Tagged: | Permalink
Posted by chronicrants

The new meaning of “Can I afford that?” when you live on SSDI

January 23, 2015

A friend just emailed me about a good deal on something I’d like to buy. But can I afford the $72 for 20120809_220808something that I don’t really need? Yes and no.

I’m one of the lucky ones. I was raised in a middle class family. When I was born my parents started a college fund, and I graduated from school without any debt. Actually, I had money in the bank because I’d learned to save what I earned from my various jobs. I was taught to never spend more than you had. Credit cards were to be paid off in full every month. I worked all through graduate school and never paid a dime in tuition. I had plenty of problems in life, but I never had debt. I feel so fortunate for that, I am so thankful for the good money lessons my parents taught me.

So when I had to leave my job due to disability, I had savings. Many people don’t. And I managed to get SSDI. Many people don’t. I am so grateful for all of that.

But for the first time in my life, money began to stress me out when I left my job. From the time I started babysitting at age 12, I’d always worked. I’d always had a way to earn money. Sometimes I worked part time, sometimes only on school vacations, but I always worked. Several years back I quit a job where I was unhappy and it was my first real break, but I had planned for it, I had savings, and I was highly employable, so I knew that I could get a job whenever I wanted and needed it. After some time off, I went back to work. I never earned a high salary, but I was frugal and I saved.

When I became too sick to work, though, it was all different. Not having the option of going back to work was stressful. There would be no way to replenish what I spent. That savings account is a huge comfort, but it won’t last forever. And then what?

SSDI is helpful, but it’s not enough. It almost covers my rent. Almost. I have food stamps that almost pay for my groceries. Almost. The extra rent and grocery costs are about $100 every month out of my savings account. Every single purchase beyond my rent comes out of my savings account. Electricity, gas for cooking, car insurance, gas for the car, phone, internet, very limited entertainment, and occasional clothing all come out of my savings account. And medical expenses. Oh, the medical expenses.

Each time I consider if I can afford something, I know that technically I can. Technically I have the money sitting in my savings account. But I also see those savings going down every month. I don’t know if I’ll ever be able to earn more than I spend. So should I save that $72 for the future? And what about the present? There are doctors and medical tests that I think might help but that I’m putting off because they aren’t covered by insurance. Of course, those are hundreds or thousands of dollars, not just $72, but it’s the same idea. If I’m not pulling money out of savings for those doctors and tests, should I really do it for something more frivolous? And if I really wanted to pull money out of savings for something fun, I’d get a pet. But I can’t pull money out for those big things, so getting something little might be fun and comforting. Or I could spend even less and get something else I’d really like, like a new sweater. My clothes are all old and out of style and starting to get threadbare. But even if it was only $30, I would still have to take that money out of savings. And that brings me back to the start of my reasoning: technically I can afford it, but I probably shouldn’t.

Each little “just this once” adds up. $72 here, $15 there, and my savings account keeps shrinking. I’m so grateful to have that account. I want to make it last as long as possible.

Then again, maybe I’ll just take $1 out of savings and go buy a lottery ticket. Then maybe I could afford it all.

2 Comments | Decisions, Expectations, Frustration, Job, Limitations, Rants | Tagged: , | Permalink
Posted by chronicrants

Dear doctor: Those symptoms you ignored were signs of a real problem

January 7, 2015

I don’t expect every doctor to know everything there is to know about medicine and health. I don’t even expect them to know everything there is to know in their own specialty. But when I present the same symptom to many doctors, and it’s common enough to be written on one of those silly internet lists, shouldn’t at least ONE DOCTOR have known what was going on??? Or at the very least, they shouldn’t have brushed it off!

Back in my mid-20s my fingernails began to curve. Before that they were pretty typical nails, I think. Then suddenly, they curved downwards as they got longer. The first and middle fingers were the worst on each hand. I just cut them recently so I can’t take a photo today, but trust me on this; it was really noticeable.

I didn’t assume there was a major, life altering problem, but it definitely wasn’t normal, so I showed my doctor. He brushed it off, saying it was nothing. I showed my next doctor after him. Same response. I showed many doctors, both internists and specialists. Some said it was nothing. Others weren’t sure, but said I shouldn’t worry. Not a single one suggested that maybe it should be investigated. A friend said it could be a vitamin deficiency of some sort. My doctor didn’t agree. So what could I do about it? Looking things up online wasn’t so easy just a few short years ago, and I had bigger health problems to worry about.

I came across this short list, What Your Hands Can Reveal About Your Health, a few months ago, and I haven’t been able to forget about it. That’s because it was so clear about this problem that none of my doctors addressed:

Curved nails

Soft nails that curve likes spoons can be a sign of iron-deficiency anemia, says Dr.Leffell. The condition, called koilonychias, can be due to such malnutrition, gastrointestinal blood loss, worms, gastrointestinal malignancy, or celiac disease. See your internist who can check your iron levels.

Now, obviously my doctors screwed up in other ways. I had low ferritin levels for many years, but none of my doctors addressed it. It wasn’t until I sent myself to a hematologist that I finally received the iron infusions that got my levels up to where they should be. And I had symptoms of Celiac Disease for many years, but doctors kept telling me it was IBS, or IBS and reflux, or IBS and stress. Nothing improved until I put myself on a gluten-free diet. So really, the finger nails were just one more symptom that was ignored.

But why were they ignored?

I will never know why multiple doctors chose to brush off my concerns about very real symptoms of very real illnesses. I’ll never know if other patients were similarly dismissed. But I do know that an injustice was done.

I am so grateful that I took my health into my own hands. It’s not easy, and sometimes I forget to fight back, but I’m trying. And every time I come across another symptom that my doctors overlooked or brushed off, it’s a reminder that it is worth every bit of effort I expend to continue pursuing the treatments that I believe are best. From now on, I choose to see my curved fingernails as a reminder that I need to make my own decisions about what is relevant to my health. I won’t be brushed off again.

6 Comments | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Medication, Rants, Symptoms | 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

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