More things your doctor doesn’t tell you: temporary handicapped parking permits

October 31, 2014

I can’t believe how many times I’ve had different versions of the same conversation. First there was this one:Handicapped Parking

Me: There is absolutely no excuse for parking in a handicapped parking space without a permit.

Him: Well, maybe there are some.

Me: No. None. There’s just no excuse at all. If you need the space, get a permit.

Him: What do you think about pregnant women using those spaces?

Me: I have had plenty of pregnant friends who could walk around just fine up to the time they delivered. They sure did better than me!

Him: Well, my sister had some complications.

Me: Then she should have gotten a temporary permit from her doctor.

Him: Oh, I didn’t know those existed!

Then came this one:

Me: There is absolutely no excuse for parking in a handicapped parking space without a permit.

Her: I totally agree. Usually. I mean, I did park in them last month when my foot was healing. But that was different. I needed it.

Me: If you really needed it then you should have gotten a temporary permit from your doctor.

Her: Oh, I didn’t know those existed!

And there have been others. Why is it so hard to understand that there is no excuse whatsoever for parking in a handicapped parking space without a permit? Why don’t people realize that if they have a legitimate need then they should get a temporary permit? Oh, that’s right, because doctors never offer them! Shouldn’t a doctor suggest to a patient with a broken foot or some other temporary condition that they get a temporary permit? I don’t know if temporary permits are available in every state, but they definitely are in Massachusetts. (If you want proof, check out #6 on this site.) But the average ambulatory person does not know this. Why would they?

Doctors should know it, though. They should know it, and they should tell their patients. I am not suggesting that these temporary permits be handed out like candy on Halloween. However, like so many other issues in the world of illness, education will help everyone. People who need temporary permits would be helped so much if they could actually get them. And people with a legitimate need to park in those spaces would be helped by people not assuming it’s ok to park there if they themselves judge their own need to be worthy.

So I will continue to say this to people, and I hope you do, too:

It’s not up to you to decide if you “need” or “deserve” to park in those spaces. If you have a legitimate need, get a permit. Otherwise, leave those spaces for people who really do need them!

Have you had similar conversations? Please share some in the comments below!

14 Comments | Educating, Expectations, Frustration, Healthcare, Insensitive, Limitations, Parking, Rants | Tagged: , | Permalink
Posted by chronicrants

Why do you judge how I use my food stamps? An open letter to “news” writers

October 29, 2014

Dear Judgmental “News Writer,”

Since I’m too sick to work, my financial situation isn’t so great. So I applied for SNAP, formerly called food stamps. A couple weeks ago I got the letter stating I’d received the benefit. I went to the grocery store and, lo and behold, food stamps covered everything I bought, just like they’re supposed to!

But apparently, this is evil and will destroy our society. Or at least, that’s what you seem to think.

As I mentioned a couple weeks ago, I wasn’t sure what I could buy with food stamps. Toilet paper? Toothpaste? Vitamins? No, no, and no, as it turns out. The SNAP web site answered some of my questions, but not all of them. So I turned to Google and typed in a few search terms. What I found was horrifying.

10-29-2014 10-58-16 AM

This screenshot is from the first page of search results. The first few items were all government web sites. The last one here is a very useful post by a blogger. And the three in between from “news” sources? Oy! I clicked on “11 Things You Didn’t Know You Could Buy With Food Stamps” thinking, oh-so-foolishly, that I’d find some helpful tips. Instead, what I found was an insulting, arrogant, judgmental article about the horrible things people like me buy with food stamps. “5 Surprising Things You Can Buy With Food Stamps” was more of the same. So were several other articles I clicked on. Apparently, it’s everyone else’s business what I buy and what I eat.

I want to pause for a moment to note that “10 Things You Can’t Buy With Food Stamps” is wonderful. It points out that, yes, SNAP benefits are meant for food, but things like toilet paper and toothpaste are necessities that aren’t covered. Take a look when you’re done reading this.

Now, I know that people feel they have a right to say what “their” tax dollars are used for. But that’s not how society works. I don’t get to choose whether “my” tax dollars are used to pay for a war, local schools that I don’t use, or road maintenance that I don’t particularly care about (actually, I do care, but that’s another story.) The idea is that society supports society, and then everyone benefits. So yes, my tax dollars support local schools even though I don’t have children, and that’s ok because one day the children who are educated in those schools will be our police, scientists, doctors, and teachers. You see how that works? Again, we all support each other, and then everyone benefits.

Unless someone is on food stamps or getting social security or receiving some other “benefit,” at which point they’re demonized by society. By you.

Apparently writers like you feel justified in calling out someone who buys a bag of chips or a pastry with their food stamps. Oh the horror! They aren’t being healthy enough! And the “N” in SNAP stands for “Nutrition” so this can’t be allowed! You get that this is sarcasm, right?

So who defines what’s nutritious? Is that sugary cereal you feed your child nutritious? Do you know how much sugar is in a glass of milk? Is there too much salt in a frozen dinner? What about a freshly cooked rotisserie chicken? Oh wait, that chicken isn’t covered by food stamps. Ok, well what about that carton of ice cream you like to dig into after dinner on a hot summer night? Oh, it’s ok when you eat junk food because you pay for it with your hard-earned money, but I can’t eat it because I’m on food stamps? Really? What if you’re a government employee and my taxes pay your salary? Then do I get a say?

And again, who decides which foods are nutritious? Maybe you have hypertension and need to stay off salt, so a mildly salted food is bad for you. But I have hypotension and multiple doctors have told me to increase my salt intake, so for me those foods are better. Then again, sugar is a problem for me, so I need to avoid that, while a small amount of sugar might be ok for you. They say red wine has health benefits, but it’s not covered by food stamps. Maybe that should change. And dark chocolate is good for you so does that mean food stamps should cover chocolate bars? What about chocolate cake? Who draws that line? Should it be you, cocky “news writer”? A doctor? A medical board?

Or, I don’t know, maybe me, the person who is eating this food?

And by the way, what happens when, after years of gorging on unhealthy foods with your hard-earned money and righteous attitude, you get sick? Who will pay for your medical care? Who will support you if you can’t work? And how will you buy food if you can’t work? You better come up with a plan that doesn’t involve any government support or “benefits” because you’ve made it quite clear how you feel about those!

Now if you’ll excuse me, I’m off to have some homemade chicken with apricots, rice, and steamed green beans. Followed by a bag of Cheetos. Because I want them and it’s my choice, not yours.

10 Comments | Educating, Frustration, Healthcare, Insensitive, Intrusions, Politics, Rants | Tagged: , , , | Permalink
Posted by chronicrants

Why I don’t have a wheelchair, and it’s not what you think

October 23, 2014

The other day I wrote about the freedom of a wheelchair. I wrote about how using wheelchairs allowed me to travel last weekend when I otherwise wouldn’t have been able to, and they also let me get out of the hotel room and have a little bit of fun. But last weekend wasn’t the first time I used a wheelchair, and I doubt it will be the last. So why don’t I have one of my own?

For a long time I didn’t need a wheelchair. It was rare that I had trouble walking, and when I did, I could usually manage to “power through.” As the pain and disability got worse, I occasionally had a friend push me in a chair at the mall, or use a chair in an airport. It wasn’t often, but I did it. But I told myself those were aberrations. I was feeling stubborn. I didn’t want to need a wheelchair.

More recently, as I found myself telling people more often that “I can’t leave my apartment” or “I can’t walk” I realized that the real limitation wasn’t my ability to walk, but my inability to find an alternative. Due to joint pain and instability in my wrists, I can’t use a cane, crutches, or a walker. I can’t use my hands to lean on anything. So when the pain in my feet or knees is especially bad, I’m stuck. I spend days at a time sitting on the couch or lying in bed, and hobbling to the bathroom or kitchen only when I truly have to. I can’t leave my apartment because it involves too much walking. The stubbornness has dissolved as I have been become a prisoner in my own home. But what if I could leave without walking?

Most of my friends think I don’t have a wheelchair because I don’t need one. Some others think it’s because I refuse to use one. They’re both wrong. The reason is sadly simple: money. I can’t afford it.

Let’s say I get a low-end electric wheelchair for $1500. That’s a lot of money, especially for something I wouldn’t use every 20120809_220808day, but I think it would be worth it and I could manage to pay for it. Unfortunately, that’s not the only cost. There are many accessories I’m sure I’ll need, even though I don’t know yet what they are (if you do know, please list them in the comments! I’m trying to get an accurate idea, in case I end up doing this at some point.) And I’m guessing there would be repairs and maintenance or the chair.

Now how will get that chair around? I need a van. Let’s forget for a moment about the extra cost for gas on a minivan (I drive a compact car now.) And let’s ignore the extra money for repairs, since I’d have to get a much older car, with many more miles, than what I have now. Let’s just look at the cost of the van itself. After trading in my current car, I’d probably spend about $20,000 for a used wheelchair van.

So that’s $21,500. That’s a lot of money! And as if that weren’t enough, I need to be able to get to the van. Right now, on the bad days, I can’t walk down the long hall from my apartment to the front of my building, or down the walkway from the front door to the sidewalk. And then my car could be parked a couple blocks away. I should really live in an accessible apartment. Those are incredibly hard to find in the Boston area. These are old buildings. The last time I lived in a place that was built post-1930 was 4 apartments and a dozen years ago when I lived on the west coast. In fact, I’ve only ever lived in 2 accessible apartments. 1 was that apartment on the west coast and the other was a place that I lived in for 1 semester in college. That’s it. Everyplace else has had stairs. Newer buildings are accessible. Newer building are also expensive. Not only would I be paying moving costs, but my rent would go through the roof. This is just not an option. More likely, I would need to move to another inaccessible apartment that involved less walking to get to my car. It would need to have parking, though, so my car would be closer. Chances are, I’d be paying my same rent or more. Probably more.

Still, let’s say I could move with just slightly higher rent, plus moving costs, plus the van, and the wheelchair itself. We’re talking approximately $24,000 for a wheelchair that would be incredibly helpful about 10 times per year. (Each time varies between a few hours or a couple weeks.) This just doesn’t make sense.

So for those who’ve wondered why I don’t have a wheelchair, even though there are obviously days that it would be incredibly helpful, that’s why. It’s about the money. Plain and simple. It sucks, but it’s the reality.

Have you had to give up using a wheelchair or other mobility aide because of cost? What’s your experience with wheelchair use? Are my numbers off in any way? Please comment and share your story!

19 Comments | Educating, Frustration, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

September kicked my ass

September 29, 2014

Here’s the thing about chronic illness: it’s unpredictable.

And here’s the thing about life: it too is unpredictable.

And sometimes the unpredictable chronic illness shit coincides with the unpredictable life shit.

That’s what happened to me. That’s why this blog has been so quiet lately. And that’s why September kicked my ass.

It started with my typical CI issues flaring up. Then I had a surprise when I had an unusually large amount of blood drawn and I got light-headed and started to black out. Bad pain made everything a bit worse. The fatigue was really horrible. A sleep study stressed me out. I had to chase doctors more than usual. I had insurance-related financial worries. I had a looming deadline to send in the paperwork for my SNAP (formerly food stamps) application. And then, just when I was completely overwhelmed, a loved one died. I was devastated. I was stressed out. I was running around trying to be with family, attend the funeral, sit shiva, and help clear out his apartment. As you can imagine, my stress, fatigue, pain, and nausea all got even worse.

Now, September wasn’t all bad. I started dating someone and things are going really well. I’m processing my grief. The sleep study went well. The symptoms have been improving. Still, it wasn’t my favorite time. I mean, I wasn’t even blogging regularly! That tells you just how badly the month had gone!

October is just a couple days away, and I’m hopeful that it will be a better month. I’m starting a new sleep apnea treatment, I’ll continue dating the guy, I hope to find time to cook, and the transition to autumn that was probably responsible for a lot of my September symptoms will be complete. It won’t be perfect, but surly it must be better?

The thing about chronic illness is that, like life, there are ups and there are downs. September gave me more than my share of downs. Now I’m really hoping for some ups! So screw you, September! I’m moving on, to bigger and better things!

7 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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