Totally. Freaking. Out.

June 2, 2018

I just got a letter in the mail that’s bad. Very bad.

I’ve been having a hard enough time lately. I’ve been feeling really lonely and isolated. I want to date but don’t feel up to it. My birthday is coming up and I feel time passing me by. My youth is disappearing and I haven’t had a chance to live it. That’s all horrible enough, and I’ve been struggling to deal with it.

But then the letter came.

From the Social Security Administration.

Once upon a time, I became too sick for work, so I applied for social security disability benefits. I was denied.

I appealed. I was denied.

I appealed again. I went before a judge. And finally, I won! That process took two and a half years. Two and a half years of trying to prove that I really was as sick as I was. I finally was able to breathe in July 2014. I was relieved, and could finally focus on my health. During that time I was so stressed out that it was hard to make any improvements in my health.

I knew then that I would face a review of my case every few years, but time went by with no review, and I mostly forgot about it. Occasionally it came to mind, but not often. Thanks to budget cuts, they didn’t have the staff to do frequent reviews.

But today I got the letter in the mail: they’re reviewing my case. I have 30 days to mail in the form. Shit shit shitty shit shit.

It’s a deceptively simple form, just 1 page double-sided. But the questions are hard. List doctors have I seen, tests I’ve had done, and evaluations I’ve had in the last 2 years? And there’s only space for THREE? Are they kidding?!? Which ones should I list? This is why I need a lawyer.

Too bad my former lawyer isn’t practicing anymore.

I have 30 days to find someone new, interview them, hire them, set up a meeting with them, and get their help with this shit. Because this time, I’m getting a lawyer from the start. If they’ll work with me.

Is my health better, the same, or worse? Um, some aspects are better, some are worse. But what will my doctors say if they’re questioned? You see, these questions are tricky!

And it gets worse, because I there is a very likely chance I will be denied, and will have to appeal. And what happens then? Will I lose my Medicare health insurance during the appeal? If I do, then I will also lose MassHealth. And without steady income coming in, I could lose my affordable housing, for which I must prove financial viability. As it is, my income is “too low” for affordable housing, and I had to use my assets as proof of my ability to pay. Without any income, will that be enough?

And what will I do without any income?! I will have to start cashing in my investments pretty soon. As it is, I manage to sort of make things work, but the numbers in my bank account have been slowly moving down. This will make them move down a hell of a lot faster.

There’s a chance I won’t be denied. An incredibly slim chance. I’m not holding my breath for that.

What can I do in the meantime? It’s a Saturday evening, so I have to wait a day and a half before I can even call a lawyer, and who knows how long it will be before I can speak to one!

I’m trying to stay calm. I’m going to ignore the rest of the things I wanted to do tonight (except my physical therapy, because my health doesn’t magically improve just because the government is being a pain in the ass) and try to rest with tv and knitting, two things I find relaxing.

And I will hope that everything works out. Maybe tomorrow I’ll buy a lottery ticket. Because nothing would make me happier right now than knowing I can just throw that form in the trash because I don’t need it. Or maybe I can marry someone rich (as if I’ve had any luck in the relationship department anyway.) The thing is, there just aren’t that many options.

Happy birthday to me.

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Trying to manage when it feels unmanageable

May 7, 2018

Somehow I used to work 45+ hours per week, cook, clean, do errands and chores, and have a social life. How?

Now I feel more overwhelmed than I did then, and I do a lot less. In some ways. In other ways, I suppose I do a lot more, but it’s hard to remember that. Our culture is so wrapped up in “jobs” and “what do you do for work?” and “you must have a lot of free time without a job” that it’s easy to feel like a failure for being overwhelmed without the 9 to 5.

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I think that my mental and emotional tolerance for these kinds of things is way lower than it used to be. But I also know that I do a lot. Dealing with pills and physical therapy exercises take up time. So do meal planning, clothes planning, and all of the other planning around my health issues. Meditation, reading up on symptoms and treatments, and writing this blog also take up time. Then there are the many, many medical appointments. And that’s all before we talk about actual acute symptom management. Not to mention, the extra hours I need to spend in bed and resting on the couch. Put that all together, and that’s my full time job.

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Then there’s my work. It’s not a 9 to 5, but it’s all I can manage. Sometimes, it’s more than I can manage. I sell craft items I make. Or at least, I try to. I have an online coaching business. I just tried to start another online business, but it was too much, and now I’m in the process of shutting it down. I do dog sitting. Not every day, but a little is better than none. It has the advantage of giving me canine company. Right now, this beautiful dog is snoring next to me!

There’s also non-work work. I do a little bit of volunteering for a support group that I’m in. I speak to friends, friends of friends, and friends of friends of friends about health issues and try to assist the best that I can.

On top of all of that, I have typical adult stuff: laundry (which I should actually be doing right now,) grocery shopping, cooking, dishes, cleaning, other errands. This week I finally got a haircut, which was about 3 weeks overdue. I wanted to do it sooner, but between feeling sick, being busy, and simply feeling overwhelmed, I wasn’t able to do it.

I have personal projects. I am currently writing a book about living with chronic illness. I am trying to clean out the clutter in my closets. I’d like to experiment with some new recipes. I want to spend more time reading.

On top of all of that, as if it weren’t already enough, I’d like to socialize more. Over a year ago I left the city and moved out to the suburbs. I want to make more friends out here. I want to spend more time with my old friends. I want to date. After a recent breakup I finally feel ready to date again, but I have no time or bandwidth for it.

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It’s true that I’m less efficient than I used to be. Let me sit in front of the computer to work for an hour, and I will accomplish less than I could have accomplished in an hour 10 years ago. Some of that is illness-related. Some of that is being out of practice. But I am working for that hour and I do get shit done.

It’s just that there’s always more to do than I can manage. And something’s gotta give.

Which is why I am not dating. Which is why I am closing one of the businesses I started. Which is why I don’t socialize nearly as much as I’d like to. Which is why I don’t have much fun in my life these days. Which is why I am stressed out and overwhelmed and feeling like a failure. Sure, I know that I am not a failure. It’s just that sometimes it’s hard to remember that. To really believe it. All I can do is keep remembering how much I do, and strive to eventually get to a place where I’m less overwhelmed.

And for you, dear reader, I want you to know that you’re not alone. In the chronic illness world, we often seem to have 2 modes: doing a lot that never seems to be enough and feeling overwhelmed and stressed out; or doing very little “productive” stuff while we rest and take care of our health and feel guilty about not doing enough.  But we shouldn’t feel guilty. We are doing the best we can to take care of ourselves. Some folks are even taking care of families as well. It’s hard. Fucking hard. And we deserve praise and congratulations for everything we work so hard to do, even when it’s not as much as what we want to do. So give yourself a figurative pat on the back. And then go do something FUN and don’t feel guilty about it. You deserve it.

Note: I have written many times about being on benefits, so some of you are probably wondering why I’m busting my butt with multiple jobs. That is because when I add up social security, food stamps (SNAP), and fuel assistance, I still fall far short of what I need to pay my expenses. I live in affordable housing and my rent is currently over 90% of my social security income. Then I need to pay for utilities, car insurance, gas, car maintenance, medical treatments that aren’t covered by insurance, and maybe once a month I might even go out for a cheap meal. On top of all of that, I am nervous about the future state of benefits in this country, and don’t want to rely on them. I would much rather earn my own way and be independent of them. For now my goal is to earn enough to support myself with benefits. Down the road I would like to get off of them, though I know that’s a rare and difficult thing to accomplish.


The circular reasoning of spending money to get off benefits

February 4, 2018

I was always one of the few people who didn’t stress about money. I was lucky.

My parents raised me in a comfortable home, where we never worried about the basics. We didn’t take a lot of fancy trips, and my mom didn’t wear a lot of expensive jewelry. My parents bought new cars like Camrys – new, but not luxury. I got an allowance every week. It wasn’t huge, I saved it. I saved a lot. I saved my babysitting money. I saved my summer job money. I spent some too, but I saved more than I spent. By the time I went to college, I had decent savings.

My parents paid for college. I got a fellowship for my first year of grad school, then worked two jobs to pay for the next year. I never had any debt. I worked in nonprofit, so I didn’t earn a lot, but I lived inexpensively for the most part, and it all worked out.

Until I became too sick to work. That changed everything.

Suddenly, I worried about every dollar I spent because I knew I couldn’t earn more. I also knew that my benefits didn’t quite cover my expenses. I was taking money out of savings to make up the difference, and how long could that last? Thank goodness for my savings!

And then my health started to improve. I felt I could work a little bit. Not enough for an office job. Not enough for a typical work-from-home job. I couldn’t predict which days I would feel up to working. Or which weeks I wouldn’t be able to work at all. So I started my own business.

Things didn’t go great. I made some money, but nothing consistent. Worse, there was no way to earn more without putting in more hours, and that was impossible. I burned out fast.

I decided it was time to try a different type of business. I had thought about it a couple years ago, but discounted it for a few reasons. For one, it seemed less fun. For another, it required taking a decent amount of money out of savings and risking losing it. But now, I don’t have a lot of options, so I have to try.

Even more than risking that money on the business, I’m going to hire a coach! And the coach isn’t cheap. Still, if I’m going to do it, I should do it right, right?

This is a decent amount of money coming out of my savings. I don’t think I would have loved it at any time in my life, but right now especially, it makes me very nervous. I need this money!

On the other hand, what am I risking? This money in my savings could cover me for  year, as long as I have my other benefits. But for various reasons, I am about to lose some of my benefits (fuel assistance, utility assistance, food stamps/SNAP.) So this money would cover me for less than a year, in addition to social security. I could lose a year’s worth of non-rent expenses.

That’s the risk. But what about the reward? If this works, I could earn enough to get off of benefits altogether! I could support myself without having to work full time. I would do the work from home (or from anywhere, as long as I have a laptop and internet connection) and make a full time income. It would be amazing!

That’s what I’m holding on to. That hope that maybe, just maybe, this could work.

I know it’s a long shot. Very few people manage to get off of benefits. I could even earn enough to lose my benefits without earning enough to support myself, which is the worst-case scenario (and the one I’m going to be careful to avoid.)

I am supposed to pay the coach today, and I’m nervous as hell. I keep holding off. It’s A LOT of money. But on the other hand, it isn’t that much money. And there’s the rub. If I was working, it wouldn’t feel like all that much. Yes, it’s a lot (thousands of dollars), but I’d be earning, and I don’t have debt. It only feels like so much because I can’t earn more. But ironically, I need to spend it so that I have a chance at earning more, even though it’s my fear of not being able to earn it back that’s stopping me from spending it in the first place.

I have been wrestling with this decision for a week. Every time I convince myself to do it, I chicken out. But tomorrow is it. The final deadline. Because at some point, the coach needs to fill in this slot in her schedule, and I need to sleep better at night without worrying about this.

And who knows? Maybe, just maybe, it could work…..

Do you have these same kinds of feelings about spending money, even when it feels necessary or beneficial in the long run? How do you handle the complicated emotions it brings up?

P.S. This isn’t a get-rich-quick scheme. My goal would be to earn back everything I spent by the end of this year, to make a profit next year, and to hopefully be off benefits the year after that. If this works, I’ll be happy to tell you all about it.


I want my time back

May 25, 2017

Back in the days when I worked full time, I felt like my job ate up all of my time. And it did, in a very obvious way.

Now I feel the same way, but it’s less obvious.

I’m trying to work, to earn some money, and it’s hard. It’s also time consuming. I’m doing this part time because that’s all I can manage, but even that feels like a lot.

And then there are the doctor appointments, the daily physical therapy, the extra time spent on food preparation, and just resting. The health stuff is its own part time job.

I’m constantly doing things and when I’m not, I feel bad because I should. Right now, I should be working on my new business, running errands, and exercising. There are so many shoulds, and not enough time.

I want to believe that I would gladly put in the time if I knew it would work, but even if the business succeeds, can I still maintain this level of input? What happens if I get a dog? How would I find time for him?

I am trying so hard to constantly work and be productive during my “good” times of the day, so I can rest during the others, and in that respect I’m succeeding. I get plenty of rest. But I also feel plenty of overwhelm. I don’t know what the answer is, or if there is one. I only know that I can’t do as much as I’d like, which is still only 20% of what I used to do, and it’s frustrating.


Desperately wanting to get off benefits

February 26, 2017

As I started to write this, it felt incredibly familiar. So I did a quick search and what do you know, I wrote this almost identical post a year ago! So much has changed, and yet so much has stayed the same….

My health has continued to improve. No one is more surprised than me! It’s not like I’m well enough to work a full time job, or even a part time job from home that requires set hours. But I’m doing some part time work from home for myself (doing some consulting) that isn’t paying much yet, but there’s some hope. Still, it’s hard to aim for a very specific amount of money, knowing that I can’t earn “too much” because I’d lose my benefits.

Lately I’ve been more desperate than usual to get off of benefits. I hate the feeling of enforced poverty, and I’m not even poor! The income is way too low, but I have a ton of savings from back when I worked, and by cutting out all of my unnecessary expenses and getting a bit of help from my parents, I’m making it work.

The thing is, I don’t want help from my parents. They’re lovely and I adore them and they never do anything to make me feel bad about needing their help. But I was financially independent the day I graduated college (they paid for it, bless them.) I had a job, an apartment, and savings from all of my previous years of work. They might occasionally give a generous check as a birthday gift, but that was. Now, they pay for my cell phone, pick up groceries for me, and do other little things, in addition to helping out in larger ways. I love them for it. But I hate it.

On top of that, I miss luxuries! I don’t need anything too fancy, but I’d love to go out to dinner without having to worry about it. I want to buy a sweater or two to replace the 5 that are threadbare. I hate that everything I spend beyond my rent is coming out of my savings, with the knowledge that I’ll never be able to replace it. Once I was out of work for a while, and I spent money from my savings. Fine. Because I knew that once I got a job, I’d put money back into my savings accounts, and I did. But this is different. If I stay on this path, I will never again be able to save any money at all. And that sucks so much.

My new consulting business is financial coaching. It’s something I started doing ages ago, back when I had a full time job, but now I’m trying to do more of it. It sucks to advise people on how to build up their savings when I can’t do that for myself. I read books and blogs about effective ways to save, thinking about which principles I’d like to apply myself, and then I remember that I can’t, and I never will.

I feel trapped. And lately I’ve been trying to escape from the cage. But there’s no way out.

I do the math over and over. After all, that’s my thing: calculating money. I figure out how much I would need to earn in order to support myself without Social Security, fuel assistance, food stamps, MassHealth (Medicaid), Medicare, or my new affordable housing situation. I multiply for taxes. I do the math and it feels impossible. But what if….?

And then just as I begin to think it might be worth trying, I remember that even if I can manage to work for myself from home for a while, chances are good that my health will take a dive at some point and I’ll be unable to work again. I could try applying for benefits, but it took over 2 years the first time, and I there’s a good chance the next time I wouldn’t get them at all.

If I’m going to get off benefits now, I have to earn enough that I can save huge amounts every year to defend myself against needing benefits again in the future. I have a lot of savings now, but not enough to last the rest of my life, which could be another 50 or even 60 years. I would be too nervous to go off benefits until I was saving large amounts of money. That would be in addition to the money I’d need to earn to pay my regular bills.

This isn’t impossible. My odds are better than 0. It’s just that right now, at this moment, it doesn’t feel that way at all.

Still, I’m aching to get out of this cage.


The guilt of not working on the “good” days

June 26, 2016

“Would get a job if you were feeling better?”

It wasn’t a doctor or a judge or a parent asking me this, but a friend who has chronic illness herself. I suspected her motives, but before I asked her about them, I answered her first. It’s not an easy question to answer, only because there are so many answers!

  • If I was feeling slightly better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better every day and thought it would last, I would consider working, but I’d try working for myself first. If that failed after 6 months or a year, then I’d give in and get a job.
  • But if I was feeling a lot better every day and didn’t think it would last, I wouldn’t get a job.

And those are just a few possibilities. And they don’t take the loss of my social security and other benefits into account because my friend asked me to discount them. When I felt a lot better recently I was already working on a project to earn money from home. And sure, I started thinking that I could put more time into it and stand a better chance of succeeding. But then in the blink of an eye I returned to how I’d been feeling before. But even when I was feeling better I wouldn’t have considered getting a job, not only because I don’t want to work for someone else if I can help it, but because how I felt was still unpredictable. Better to work on my own schedule from home and not worry about someone else’s timeframe or spending energy on commuting.

But that’s me, and everyone is different. My friend had been doing much better lately, so she felt like she *should* work. She didn’t want to, but she was supposed to. Her husband came home tired from work every day, while she got to be at home. On the days she felt horrible she felt bad about this, but knew it was necessary. But now she was having more good days and felt she should do more. But her good days were unpredictable, so how could she do it?

Of course, she’s not the first one to raise this subject with me. Many of my married friends say they feel guilty that their spouse is solely responsible for supporting the family financially. Sure, some couples choose to have one person work while the other does not, but that’s a mutual decision. When chronic illness and disability are involved, it feels like there’s no choice.

One financial downside to being single is that there’s no one around to bring in any money. On the other hand, I’m only responsible for myself and my own feelings, and that’s freeing. I still feel sometimes like I *should* work, but only in a general way, only because that’s the pressure that I feel from society overall, and not from anyone in particular. Not that my friend feels pressure from her husband. But she’s aware of his extra responsibility. No one is responsible for me but me. It’s not easier, just different.

For my friend, I suggested that she volunteer one or two days a week to test the waters. She said she’d been thinking the same thing. I hope it works well for her. I really do.

As for me, I hope to never have another job, but I sure would love to earn a living with my own business! I’m working on it slowly, putting in a few hours here and there when I can. It’s going slowly. It may never work. But I’m trying. So maybe that’s my answer to the question? I’ll just keep trying to earn what I can when I can, but in a way that doesn’t set back my health. And of course, that’s the hardest part of all.


There’s no such thing as a chronic illness schedule

March 21, 2016

I used to work in an office. Back then, my chronic illnesses were more manageable.

Then I worked in an office 4 days a week and from home the 5th day. That helped. But eventually, that wasn’t enough.

Now I don’t have a job at all. Still, I’ve been making some money here and there when I can. Consulting work has gone ok, but I’d like to do something different. The problem with consulting is that I have to be ready to work at a particular time and place. Sure, I can often schedule the at-home part of the work whenever I want, but I have to meet with clients too. That part is really tough with a chronic illness. And that means I can’t take on as many clients as I need to.

I like the idea of “passive income.” With this method, I do the work up front and the money comes in later, without me having to be present at a particular time and place. For example, imagine I wrote a book. I’d put in a lot of effort up front on my own schedule to write it and market it, then when it came out I’d do some more marketing, but it would be less work at that point. The money would come in, but I’d have already done more of the work from the comfort of my living at my own pace. Sounds good, right?

The thing is, the work still has to be done. And I’m having trouble making that happen consistently.

I’ve found some other people who are trying to do similar things. One is married, has a young baby, and works a full time job, yet she works on her business more consistently than I work on mine. Then again, she doesn’t have a chronic illness. That doesn’t mean her life is easier or that she has more hours in the day. I’m constantly amazed by how productive she is. But it does mean that her schedule is fairly predictable. She works on the bus to and from her job each day. She works at night after the baby is in bed. She carves out time every weekend.

By comparison, I can’t even get a morning routine going. Some mornings I wake up and can do work within an hour or two. Other days I’m not able to do any work at all, and I go to bed without having even tried. Some days I get a lot done, but it has nothing to do with the new business. Today I wrote a blog post for that business and did a bit of reading. That’s not too bad. I also filed away some personal papers, sold something on Craigslist, did a ton of texting with various people, fixed something small on my mother’s computer, cleaned out my email inbox, made some phone calls, prepared an easy dinner and did the dishes, and took a shower. For someone else, that wouldn’t sound like much. Except for dinner, they’d do all of that before they left for work in the morning and on their lunch break. But for me, that was a lot. I had a busy weekend and I didn’t feel great. I never went outside. I wanted to bake, but never got to it. In fact, there’s a lot I wanted to do that I never got to. But I feel good about having done all of that. For me, that’s really big!

And that’s the problem. The every day things in life still have to be done, and I never know which days I’ll barely be able to get those things done and which days I’ll have the energy for a little extra. That means I can’t set a schedule.

I would love to say that I’ll get up at 8am every day, eat breakfast and work until 11am, exercise (ha!) and eat lunch, do personal stuff until 3pm, then have the rest of the day free. Or maybe do more work in the afternoon. But I can’t do anything like that. Every day is so different. Today I’m in too much pain to walk down a flight of stairs. Another day stairs are no big deal. Some days I can’t doing any writing because my brain just won’t function well enough. Other days I zip off a blog post in 1/2 hour. There’s no way to plan it. It just is.

It’s hard to explain all of this to the other entrepreneurs I talk to. They can’t understand why, without a job, I can’t put in more time on my business. And I get frustrated that even on my best days I can’t put in as much time as they do on their worst. I’m trying, but it’s just not working.

I know I need a schedule of some sort. That’s how I work best. This fit-the-work-in-when-I-can method means that other things get in the way and I end up answering emails and scanning Facebook instead of working. I need a better method.

If only I knew what that was.

Edit [3/23/16]: I just came across this post today (good timing!) and want to share it. If you’re looking for a way to earn some money yourself, maybe it will give you some useful ideas.


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