Always rethinking goals

March 27, 2015

I had a plan. Then I got sick.

But then, you know what they say about the best laid plans.

This morning I was talking with a friend. Sometimes I do some budget consulting. I don’t have the energy to do much of 3-27-2015 4-01-42 PMit, but I love it, and do it when I can. I always begin with discussing the person’s/couple’s goals. These goals can be anything: buying a house, buying a smart phone, getting a dog, having children, traveling the world, starting a business, retiring young…. there are endless possibilities.

Today I happened to be working with a friend, so it was more casual than when I get paid by strangers to consult for them. After we’d gone through her goals, her spending, her debt, her income, and her savings, we talked some more about goals. And she asked me about mine.

Most people assume my goal is to get healthy, but it’s actually not. I know I’ll never be completely healthy, and I also know I want more than that.

We all had plans that were different when we were healthier. Some got derailed because of health, some got derailed for other reasons, and some were achieved. After my friend left, I thought again about my goals. I think the most unusual thing about them is how often I think about them and change them. Most people, I would guess, hardly ever step back to look at the bigger picture. They assume they’ll do the things society tells them to do, like get a job, get married, buy a house, and have children, probably in that order. But they don’t think beyond that. I know I didn’t. In fact, that’s about what my life plan looked like.

Just before I got sick, I started thinking about leaving my 9-5 job and starting my own business. I didn’t know what that would be. I thought I might try to earn a living off of blogging (spoiler alert: this blog is 4 years old and earns nothing, so that won’t be how I earn my fortune.) I considered some other options. I dated and looked for Mr. or Ms. Right. And mostly I put one foot in front of the other.

Since I’ve been out of work, I am constantly thinking about the present and the future, about what I want and how to achieve it. I change it constantly, as my health and moods change. I’ve come up with several potential ways to work for myself from home part time. I know that I want a dog. I want to improve my health as much as possible while not being obsessed with it. I want a dog. I would love to find a life partner, but I’m also currently content with being single. I want to live someplace quiet and peaceful, preferably near the water. I want to exercise regularly, including physical therapy. I want to be financially stable. I want to spend less time home alone and more time with people I love. And did I mention that I want a dog?

Most people don’t think about their goals often, if at all. Having a chronic illness doesn’t necessarily change that. For some people, it might make them think about their goals less. I happen to go the opposite way. I need something to reach for. I need a happy place to aim for. It gives me a reason to try. Let’s face it, living with chronic illness is work! Reaching for my goals gives me a bit of incentive not to give up on that work.

What about you? Do you spend a lot of time thinking about your goals? Do you avoid them? Do you change your goals over time? What’s one thing on your list?


6 great things about not working

February 25, 2015

Lately I’ve been thinking a lot about how much I wish I could work.* I want to get off benefits and be independent. I want to be able to buy a new sweater. I want to move to a new apartment and afford the neighborhood I like.

Those desires are all well and good, but they don’t change the reality. The reality is that I’m not ready to work yet. The 2015-01-28 08.31.11reality is that when I do return to work, it will probably be for about 5 hours per week at a low wage. I still won’t be able to afford my current expenses, never mind adding any to the list. And I can’t change that right now.

So as long as I can’t work anyway, I might as well focus on the good things about not working. Here are just a few:

  1. No commute! Not having to deal with traffic and/or crowded trains is fantastic at any time of year, but Boston has been buried under snow recently. Streets are narrow, parking is impossible, trains are breaking down, and commuters are miserable. Then there’s the ridiculous amount of time spent commuting each week. I’m glad to avoid that mess!
  2. Avoiding crowds and long lines! When I worked, it was always at a 9-5 kind of job. That means I did errands when most people did them: in the evenings and on the weekends. Since I’m not working, I make sure to only do errands on weekdays, and it’s great! There’s little traffic and few lines. Things like grocery shopping are so much easier when the roads and stores are mostly empty!
  3. Lounging in bed! Sometimes I have plans of some sort, but most mornings I have nowhere to be. I wake up to an alarm to keep myself on a certain sleep schedule, but then I lay around reading until I feel like getting up. This morning I spent 1/2 hour in bed fantasizing about what I’d do if I won the lottery. Because why not? I get up when I feel like it and not a moment before.
  4. No bad bosses! I’ve had my fair share of lousy bosses over the years. There was one good boss, and I loved that job. The others were horrible. It’s easy to forget about those crappy bosses sometimes, but when friends complain about their bosses, I remember how miserable it was. And I’m thrilled that I don’t have to do deal with their bullshit anymore!
  5. Skipping lousy weather! Sure, sometimes I’m seeing a friend or going to the doctor, but most days I have a lot of flexibility in whether or not I leave the house, or I can change things. I watch friends complain about going to work in downpours, blizzards, blistering heat, and arctic cold, while I enjoy my cozy apartment. If I have plans with friends and we see bad weather in the forecast, we just move things to a different day. Easy! I rarely go out in bad weather if I don’t want to.
  6. My time is mine! I remember those bullshit meetings where we all sat around talking and nothing useful got done. I remember sitting at my desk with nothing to do, but not being allowed to leave. I remember having to schedule time to use the bathroom. I remember getting chewed out for being 5 minutes coming back from my lunch break. And I don’t miss any of it. Now I spend my time how I want to. Ok, I can’t always do the things I want to do, but at least those limitations are set by my body (or some other reasonable source) and not by some boss or company. I do what I want to do when I want to do it and I don’t need to get permission from anyone. I feel free!

I can think of so many other great things** about not working, but these are definitely some of the best. When I think about these, I’m glad not to be going in to an office every day. Sure, a salary would be nice, but since I don’t have that option, these reminders sure help to lessen the sting!

What about you? What are some things you don’t miss at all about working at a job? Let’s get a list going in the comments!

*Note: When I talk about “work” I mean at a paid job. Obviously we all work a lot on maintaining our health, managing our households, navigating doctors and insurance companies, and so much more. Unfortunately, we don’t get paid for that kind of work.

**Note 2: I intentionally didn’t mention how great it is to have the time and flexibility to take care of my health. I think that for a lot of us, that’s a given. Trying to get time off for doctor appointments, ducking out of meetings to take medications, not being able to each the provided food at a lunch meeting and all the rest was frustrating, stressful, and detrimental to my own self-care. I could write an entire post just on that. Maybe one of these days I will. For now, I decided not to get distracted with this, but feel free to mention it in the comments if it’s what comes to mind for you!


What dog sitting has taught me about my health

November 8, 2014
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It’s time to get out of bed and play!

It’s been an interesting week for me, to say the least. For the first time in years, I’ve recently begun to have less stress and more time, but that also coincided with extra pain and other symptoms and with some family issues. But this week, I was doing ok. I was feeling pretty good health-wise. My “to do” list feels overwhelming, but only because of the quantity. There’s nothing really horrible on it, like dealing with insurance companies. So it wasn’t such a bad week for watching this cutie.

I was nervous about this. I’d promised a while ago that I’d watch this adorable little guy, but as the time approached, I wondered if I could really do a good job. I’ve always wanted a dog of my own, but it was never feasible. First I was working and traveling too much, and I had landlords who wouldn’t allow dogs, and then my health problems prevented it. Recently, though, I’ve started to think that I might be able to handle dog ownership if I could find a landlord that would allow dogs. And this week was my test.

Now, if I got a dog I’d have a yard (it’s the only way I’d do it) so that would make things easier. Still, it would be a lot of work. This guy is 11, so he doesn’t need as much activity. Plus, he’s the easiest dog I’ve never known. He rarely barks, he lets you know clearly when he needs to go out, he doesn’t pull on the leash, etc. He’s great! And he was exhausting. So how much more tiring would a younger dog be?

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Look how cute I am! Don’t you want to share your dinner?

Last night I never finished washing the dishes. I was too tired. But the pooch still had to go out. There was no choice. So out we went. Down the stairs and outside, and he peed, and then back up again. Now it’s 9:30 am and I’m exhausted, but he hasn’t had any exercise today, so we’ll be taking a walk. And I still need to finish those dishes. It’s just what happens when there’s a dog in the house. I’m completely worn out and, after a full week, I’m glad I’ll be returning him to his owners today.

But then there’s the flip side. I’ve gotten more exercise than I have in ages, and I actually feel good about it! Now, the truth is that this is coinciding with some health improvements that I’ll write about another day. Still, even with those improvements I wouldn’t have done so much walking if it wasn’t for this guy. Not a chance. I might have taken a walk every other day. Instead, I’ve been taking 2 walks every day! Look, I even wore him out!

There have been studies about how petting an animal lowers blood pressure. For someone with hypotension that’s really not a concern, but it’s so relaxing to have him curl up on my lap. It’s just the best! I haven’t done much knitting this week

Thanks for the walk! Now goodnight!

Thanks for the walk! Now goodnight!

because my hands have been otherwise occupied with petting this adorable dog. Look at him! Who wouldn’t want to pet him? He helps my stress more than I would have thought.

And then there’s having someone else to focus on. No matter how tired I am or how much pain I’m in, I have to think about taking care of him. It’s good to shift my focus. I think we’ve all experienced this is in different ways. I know that I have. I teach a friend how to knit, or I give advice to someone, or I do some volunteer work, and it’s a great distraction from my own issues. But having someone here who needs my attention every day, like it or not, brings that attention shift to a new level.

It’s been a fantastic week. I’ve absolutely loved it. And while it’s shown me that I’m not ready to have a dog quite yet, I can tell that I’m getting close. And that when I do, it’ll be more beneficial to my health than I ever would have thought. Now if you’ll excuse me, someone wants to play fetch. Hint: it isn’t me.

Do you have a pet? How do you handle its care on your worst days? How does it help you?


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.

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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.


The freedom of a wheelchair

October 21, 2014

Last weekend I went out of town for a family wedding. As regular followers know, traveling has been tough for me recently. I used to travel *a lot*! I visited family out of state at least 4 long weekends per year (2 of those involved flying.) I spent many

Connecticut trees from a train window

Connecticut trees from a train window

weekends and long weekends and sometimes a week in Maine each year. Then I would take a bigger trip each year, either overseas or to the west coast. If I was in town for 2 months, I’d get antsy. But that was before.

In the last year I have left town only once: to go to a family wedding in NY in July. And I was incredibly sick. My gastrointestinal symptoms were severe and the fatigue was terrible. So you can imagine my surprise when this weekend worked out ok, especially since it almost didn’t happen!

Last week I was in horrible pain. My toes were swollen and painful. I can’t use a cane or crutches because of the instability and pain in my wrists. Prescription painkillers barely help and the side effects are terrible. Cannabis takes the edge off, but that’s it. And I can’t use it on a train. Walking was difficult and painful on Monday, it was horrible on Tuesday, and it was nearly impossible on Wednesday. That’s when I started to question if I’d be able to go on this trip. I cried as I thought about missing the wedding of someone I care so much about. But how could I go?

I talked through every possible stage of the trip with my mother, a friend, and myself. All three of us came to the same conclusions. I needed the pain to improve. The train left Friday morning, the wedding was Saturday night. The dew point was set to drop on Friday, which meant I should feel better on Saturday or Sunday, but would that be enough? How would I navigate the train station? How would I even get there?

Thursday came and went, with pain similar to Wednesday’s pain. Thursday night my boyfriend broke up with me. It was not a good day. A neighbor took out my trash for me, since I couldn’t even make it to the basement where the trash bins are kept. I hobbled around my apartment packing. I rested. I hobbled and packed some more. I cried on the phone to my friends about possibly missing the wedding and about the breakup. I ordered a cab just in case I went, since I knew I couldn’t take the subway to the train station in my condition. I was ready for the trip, but would I be going? I oscillated for hours.

Friday morning at 6:30am my alarm went off. I never feel good when I wake up that early, but I ignored those symptoms and focused on the pain. It was still there, but it was better. Was it good enough? I showered. Could I make it? I dressed. It hurt, but not as much. Would it stop me? I packed my CPAP machine and other last-minute items. How bad would it be if the pain got worse again while I was out of town? Halfway through breakfast I finally decided to go.

I hobbled to the street and took a cab to the train station. There, I got a wheelchair and breathed a huge sigh of relief. The red cap took me right to the train and put my suitcase in the overhead rack. When I arrived at my destination, a red cap was waiting with a wheelchair. I was in pain when I arrived, but it wasn’t too bad.

The next day, the pain was worse again. While my family went out and explored a new city none of us had ever visited, I sat in the hotel room. At first, it was relaxing to read a book and rest. But I quickly got stir-crazy. The room didn’t get great light, and I wanted to get out of there. I called the front desk and asked if they had a wheelchair for guests to use, and they did! I called my mother on her cell, and she and my dad came back for me.

A little while later, we were strolling through a farmers market, sitting in a beautiful park, and then enjoying a nice lunch. It wasn’t fancy. It wasn’t the way I would have explored a new city if I was able to walk. It’s not what I would have done 3 years ago. But it felt so good to get out of that hotel room! I was so happy! The wheelchair gave me a kind of freedom I wouldn’t normally have had, even while I lacked the freedom to choose where I went, since I needed my parents to push me.

Thankfully, miraculously, my prediction was pretty accurate. By Saturday night I was up and about at the wedding. I kept most of my standing weight on my other foot and I sat more than I otherwise would have, but I also danced a bit (well, I planted my feet and wiggled my hips, because there’s only so much you can do when you’re in pain.) I walked around and socialized. I enjoyed myself, to my own shock and pleasure.

The next morning I was in pain again, but it wasn’t as bad as in previous days. Again, we borrowed the hotel wheelchair and my parents pushed me a few blocks away to where the entire family was meeting for brunch. We had a wonderful time!

The return trip went well. Again, red caps took me to and from the train in wheelchairs. I took a cab back to my apartment. It was Sunday, and the pain wasn’t too bad, but it was enough that I wasn’t about to wrestle with luggage on the subway. Yesterday, Monday, I woke up with almost no pain. I went out and ran errands. Today I’m fine. The timing sucked, but thankfully it all worked out ok.

But it couldn’t have worked without wheelchairs. I wouldn’t have been able to manage the train stations. And even if I’d made it down there, I would have been miserable and depressed at the wedding after a day of being trapped in a hotel room. I don’t want to need a wheelchair, but I’m so glad to sometimes have the option of using one when I need it!

Do you ever use wheelchairs as an occasional or part-time aide? How do you feel about it?


Yay for food stamps! Well, sort of….

October 14, 2014

Me: “Great news! I got food stamps!”

*pause*

Me: “Isn’t that great?”

Her: “Um, sure?”

A few years ago I wouldn’t have been excited for food stamps. But things change. They change and we have to go with the flow, and the flow leads me to be thrilled about getting food stamps!

My family and friends are trying to be supportive, but they see this as a bad thing. Let’s face it, there’s a certain stigma that goes along with food stamp benefits. My mother immediately said, “You aren’t posting this on Facebook, are you? Because people can be funny about these things.” That was her nice way of saying, “People can be assholes about someone getting the benefits they need.” She didn’t want me to get attacked online. Many friends have been unsure how to react. Except for my friends in my chronic pain support group, that is. Many of them also have financial difficulties due to their health, so they appreciate how much of a difference this can make. But the others just don’t feel right saying “Congratulations!” for this.

Last month I wrote about missing out on thousands of dollars in benefits because I didn’t know to apply for them. I immediately signed up for Section 8 and am now on the very long (3-4 years) waiting list. I applied for fuel assistance and will find out about that in 2 more weeks. And I applied for SNAP, formerly called food stamps. I gathered papers just 2 days after my grandfather’s funeral because I had already applied and the paperwork deadline was fast approaching. I didn’t want to miss out. When I had looked into SNAP a couple years ago, when my finances first took a dive after I realized I wasn’t going to be able to return to my job, I wasn’t eligible. They had an asset limit of $2000. I had saved up more than that when I worked, so I wasn’t eligible.

Last month, when my friend told me about benefits, she mentioned SNAP. I figured it couldn’t hurt to look it up and, low and behold, they’d changed the requirements! My assets no longer counted against me! I could use those assets to pay my rent, and still apply for SNAP because of my low income. What a surprise! I wondered when that change occurred. Could I have applied a year ago? Two years ago? Wondering didn’t help, but applying would, so I filled out the application and went through the process. And then I waited.

After not leaving my apartment for a few days last week due to feeling like crap, I finally went downstairs and checked the mail. And there it was: a letter stating that I’d been approved and was now receiving benefits! I went to the grocery store the next day and used my new card – and it worked! I got a receipt that included my balance. It was all there.

I keep my grocery costs low, thankfully, and this will just about cover my monthly food bills. They back-dated the benefit to 30 days before my application, so I have that money too. I’ll use it to buy things like toilet paper and toothpaste, if those are allowed.

Can I afford all of my expenses now? No. Not even close. I’m still using my savings to pay for quite a bit. But every dollar helps. And I’m incredible thankful for these dollars. So as much as I wish I didn’t need SNAP/food stamps, as much as I wish I didn’t come close to the eligibility requirements, the truth is that I do need it, so I’m thrilled that I have it!

Do you get benefits? How do you feel about it? How to people react when/if you tell them?

Update: Do as it turns out, I can’t use my benefits for toilet paper and toothpaste. But I’m sure I’ll use them on groceries over time.


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