Dreams of winning the hypothetical medical lottery

December 13, 2013

I keep reading and hearing about the big $400 million lottery jackpot. I thought for a minute about what I’d do if I won (unlikely, since I didn’t buy a ticket) and I was surprised by what came to mind.

I used to dream about winning. I figured I’d quit my job, buy a house, travel with friends, get a couple of dogs, and support20120809_220808 charities. Those were the first things that came to mind. Those are all still on my mind, but now something else comes to me first: doing all the health stuff I feel I can’t afford to do right now.

Money doesn’t solve everything, but it sure could help! I wrote about this 2 years ago but life was so different then. And back then, I didn’t know what was causing my health problems. If I had that money now, I’d immediate see the doctors who don’t take insurance, run all the lab tests that the insurance companies don’t want to cover but that I know I need, and take the extra supplements I’ve been avoiding. That’s already thousands of dollars every year. Then I’d go back to physical therapy and start getting therapeutic massage every week. I would pay to see a doctor for a medical marijuana prescription and buy a high-end vaporizer to help with the chronic pain. I would get a dog, which would do wonders for my emotional health (and I could then afford a dog walker for the days I needed someone, which would be most days.) I could get a home with central air conditioning so I wouldn’t feel as horrible all summer long. Of course, I wouldn’t have the stress of worrying about my future finances, and that would really help with my cortisol levels. I would update both my eyeglasses and my orthodics more often. And of course there’d be things like buying only organic produce.

This flashed before my eyes in an instant, and then it was gone. I didn’t win the lottery. I need to save the money I have in case my benefits are pulled away, which could easily happen any time. And I don’t have enough money to make all of that happen anyway.

It’s sad but true: good health costs money. I’m lucky to be doing as well as I am, to be honest. I’m thankful for a safe home, good health insurance, and a supportive family. But $400 million might not be so bad to add to that.


Making the rest of the world wait

December 11, 2013

The past week has been really stressful, both emotionally and physically. That’s why I’m typing this at 1pm in my pajamas. I’m not talking about the clothes I wear to lounge around the apartment, but the ones I slept in last night. I have not showered or brushed my teeth. I have no had lunch. I have not gone grocery shopping, visited my grandfather, or run the errands that I planned to run today. And I won’t.

Some things can’t wait. That’s true. I have to pick up a prescription at the pharmacy. It doesn’t have to happen today, but it can’t wait forever. Maybe you have to get to the mailbox with your rent check or cook a meal. But there are so many things that we think must happen today and the truth is that the world won’t care if we put them off for a few days. For me, those things are the ones I just listed. Yes, I want to do all of those things. Sooner or later they all have to happen. I planned to do them today, but waiting is ok, too.

I’m putting my health first. I feel lousy. I spent all day yesterday at home and resting. That helped a lot! I had hoped that one day would be enough, but it wasn’t. And that’s ok. I mean, I’m not happy about it and it sucks, but it’s ok. It’s not the end of the world. It’s not the end of my world. I will spend another day at home, resting. If I have to cancel tomorrow’s plans to rest more or to do today’s errands, then so be it.

I’m putting my health first, and I know that’s the right decision. Everything else can wait. No one will mind and in the grand scheme of things, it just won’t matter.


How chronic illness affects my geographical living choices

December 4, 2013

Last year I thought I might not be getting disability payments, and I was looking at cheaper places to live (in case I did get social security payments and could maybe avoid moving in with my parents.) It was the first time I realized just how limited

Boston Public Garden with part of the Boston skyline

Boston Public Garden with part of the Boston skyline

I was, but not for the expected reasons.

I know that some of my living choices will be made based on climate – if I have a choice, that is. Several years ago I considered moving out of state. That plan was squashed when I got sick and needed to stay near my support network, etc. Still, I remember looking for a place that got decent sunshine in the winter, so my seasonal affective disorder wouldn’t be triggered too much. I also wanted a place that didn’t get hot or humid in the summer, since that makes me incredibly ill. It’s hard to find someplace that meets all of those needs, aside from southern California which I’d already tried. I wasn’t thrilled to have to base a lot of my choice on my how my body reacts to different climates, but that’s just how my life is, and I accept it.

But the other geographical limitation is one I don’t accept. Actually, it really pisses me off. I live in the Boston area, which is unfortunately one of the most expensive parts of the country. Social security doesn’t correlate with cost of living, and so my payments just wouldn’t be enough to stay in the same area. That’s why when I worried about money last year, I considered moving a bit farther away from the city. That’s why I’ve been looking this week at what my options for the future might be. I didn’t, and don’t, want to switch doctors or be too far from my family and friends, but I figured I could manage 45 minutes to an hour. The cheapest places north of the city were in New Hampshire. There were some decent ones to the west. The best to the south were in Rhode Island. And east is the ocean, so that’s out. Most of the decent choice were in New Hampshire or Rhode Island, and I think I could be happy in either place. But even though they were closer to my current spot than many other parts of Massachusetts, I couldn’t move there because of health insurance!!! Yup, my health insurance would be a problem.

Back then, and possibly again in the future, I was on MassHealth. That’s our state medicaid. I was very grateful for this. The thing is, I have to be living in MA in order to be eligible for it. If I moved, I wouldn’t be eligible anymore. Maybe I’d be eligible for another state’s medicaid, but then I wouldn’t be able to see my doctors in MA. It wouldn’t matter if they were 5 minutes or 5 hours away, if they were in another state, insurance wouldn’t cover them. I’d be allowed to pay out of pocket, of course, but that would defeat the entire purpose of moving far away to save money on rent and other expenses.

This really pisses me off. There’s been a lot of talk by politicians about letting health insurance cross state lines, but nothing at all has come of it. Plus, they’re only talking about private health insurance. What about medicaid? I’m sure there aren’t a ton of people affected by this, but I can’t be the only one. There must be so many people who live near state borders and who would rather see a doctor in the other state, if only their health insurance would pay for it.

Medicaid is there to make sure people who need it can get good healthcare without going broke, essentially. Well, what if the good healthcare is across the state line? Then what?

Listen up politicians: We Deserve Better!


Picturing my potential future

November 29, 2013

When you deal with major life illness, quite a number of unexpected things could happen. I’m going to focus on one in particular.

First, something expected happened when I had to leave work on disability: I gained a new perspective on life. I changed my mind about what I thought was important. A lot of people talk about that happening. Even healthy people expect that to happen to anyone dealing with a big illness. But then something unexpected happened, too: I had a lot of time to think. It makes sense to me now, but I hadn’t considered it before. Back when I was unemployed because I quit my job, I was busier than ever. I volunteered, did housework, met up with friends for lunch, exercised regularly, spent time looking for a new job, caught up on random life stuff (you know the constant “to do” list.) But this is different. I can’t go out much. I spend a lot of time at home and alone. At the beginning my brain was foggy and my memory was lousy so that I couldn’t do much reading or serious thinking. But thankfully those symptoms have improved. Now I read a lot of personal development books and blogs and I take the time to really think about them. After all, what else am I able to do?

I’ve been trying to stay positive and believe that I will get better at some point. The new treatment has helped a bit, and I’ll probably change the dose or try a different version soon. I really do think something will help. I know that I’ll never be truly “healthy.” There’s just been too much damage to my body. Still, I could be well enough to work, date, and socialize more. And when I think about that life, now I have a pretty good idea of what I do and don’t want it to include.

I don’t want to work too much or spend too much time doing boring chores and errands. Yes, the laundry has to be done and meals have to be cooked, but that needs to be balanced out with more fun things. I want to spend a lot of time in nature. I want to be around people I who make me happy and vice versa. I want to save my money so that I can quit working as soon as possible. Mostly, I want a simple life. I want to get rid of the clutter around my apartment (I’m working on that now, bit by bit.) I want to be present in the moment. I want to keep my to do list free of unnecessary things. I want to cross things off my to do list each day without stress, to just do them without procrastinating and then move on. I want to exercise regularly. I want to keep my health at the forefront by eating right, exercising often, and taking care of myself in general.

It’s so easy to imagine this life. I’m sure it will be harder to carry it out, but I sure plan to try! I imagine going to bed at a decent hour and waking up after 8 or 9 hours of sleep. I work efficiently at my own business for the first few hours of the day. (I think I will have to have my own business so I can have flexible hours and can work from home to accommodate my health issues.) I will take a nice walk, then eat lunch. Then I’ll work a bit more. I’ll stop working in the middle of the afternoon (I’m working on a plan to do the job part-time) and then use the rest of the afternoon to buy groceries, cook meals, do laundry, exercise more, etc. I will have the evenings free for dating, socializing, etc. My weekends will be free for that also. I will do as many chores and errands as I can during the week so that they don’t overrun my weekends. I will avoid shopping unless it’s completely necessary. I won’t buy anything unless I truly need it. I will get rid of anything in my home that I don’t really need. I will get rid of my car if I get healthy enough (I live on public transportation, so I only keep my car because some days I’m unable to walk to the bus or train.) I will spend most of my time enjoying nature and being with friends. I’ll save up the money I don’t spend so that I can retire young. After I retire, I’ll be able to volunteer more. I may even start a nonprofit. I’ve had an idea for a nonprofit floating around in my head for a while now, but I’m not healthy enough to manage it yet. If I feel able to, I’ll travel. There is so much in this world that I want to see and I’d be grateful to see even a small part of it.

Ok, I know this sounds a bit idealistic. And maybe it is. But I think I can do it, at least mostly. Sure, there will be stressful days. There will be days that I flip my priorities on their heads. That’s ok. It’s ok as long as most days are the way I just described. It will take effort and patience, but I’ll do it because I think it will be worth it.

So that’s the potential future that I’m picturing for myself. I don’t know if I will ever have the opportunity to try it, but I’m sure as hell going to keep working towards that goal!

Side note: If you like the idea of simplicity, try starting here: bemorewithless.com  This is my favorite simplicity blog at the moment.