I don’t have plans but I still won’t go out with you

December 29, 2013

I think that when most people get an invitation, they accept unless they have other plans or expect to have other plans. Sometimes they might need to schedule a day to just rest and take care of personal stuff. I used to schedule a “me” day Sunny Dayabout once every month or two so that I could relax, read, watch tv, answer emails, pay bills, etc. But things change when you have chronic fatigue.

My mom wanted to go shopping today. Since money is tight for me, she’s buying me a new winter coat for Chanukkah (thanks Mom!) Scheduling-wise, this seemed like a good day, but I’m tired and in pain and there’s just no way. So I told her that and she understood.

Sometimes the person who wants to get together is a friend I don’t know as well. They don’t ask it as “Do you want to go out tomorrow?” but instead “Are you free tomorrow?” or even “Do you have any plans?” The connotations are the same and they’re all socially appropriate, but for me they’re very different questions. No, I don’t have plans, but that doesn’t mean I’ll get together with you. I might want to, but I just can’t. It’s easy to turn down the invitation once, but it’s harder to do that over and over with someone who doesn’t understand the situation. Sure, I could lie and make up plans, but I don’t do that except in extreme circumstances. My health issues are hard enough; I’m not about to juggle lies on top of everything else. Still, it’s hard to get people to understand the validity of, “I’d love to get together but I’m going out two days before that so I won’t be able to go out again so soon.” To most people, that just doesn’t make any sense at all.

Of course, then there’s the awkward, “Yes I’m free, and yes I want to get together, but only if you come to my place.” That might sound nice to some – I’m inviting people over, after all. But the truth is, I ask them to bring their own meals because I don’t have the energy to cook for others; I barely have the energy to cook for myself! I don’t “entertain” but instead stay on the couch while we talk or play a game. Since many of my friends have little kids, coming to my place isn’t possible if they’re busy caring for the little ones. Plus, so many of us get around on public transportation and getting to my place can take an hour or more each way for some friends. A good compromise might be to meet up in the middle, but if I’m asking them to come to my place it’s because I can’t do that, so then I’m asking them to spend a whole lot of time traveling to see me. This is ok from time to time, but not every single time.

For the close friends and family, this is all ok. Sure, it’s cumbersome and annoying for all of us, but they understand. They know that when the sun is shining and they’re at the park with their kids, I’d so much rather be with them than sitting at home browsing the web. They know that I’d like to invite them to dinner and actually provide it. They know I will gladly go to their place on the few days that I can. But for everyone else, it’s a bit harder. I’ve noticed that I’m getting fewer invitations these days. When someone gets turned down over and over, I guess they feel there’s no point in continuing to invite me. I’d probably feel the same way if I was in their place. Still, I’m choosing to focus on the people who’ve stuck around. Those are the true friends who I really want to spend my time with. And if I got my health back tomorrow (if only!) then those are the people who I would continue to spend time with.

So instead of shopping for a new winter coat to replace my old, torn one, I’ll be writing blog posts, reading blogs, watching tv, and reading my library book today. It’s not great. Actually, it sucks. But I don’t feel that I have a choice. I’m just hoping I’ll be able to go out tomorrow, instead. I’ll be keeping my fingers figuratively crossed both for me and for you and we’ll be able to get out at least a little bit this week.


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!