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!

3 Comments | Decisions, Frustration, Healthcare, Limitations, Politics, Rants | Permalink
Posted by chronicrants

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.

9 Comments | Decisions, Expectations, Frustration, Job, Limitations, Unpredictable | Permalink
Posted by chronicrants

How the other side lives: others’ medical appointments

November 27, 2013

I’ve been going to other people’s medical appointments lately. Well, I’ve really only been going to appointments for two. The first is my father. He needs someone more experienced to ask the right questions. The second is a friend who just had a baby. I just hold the baby in the waiting room while my friend has her checkup or whatever.

It’s interesting to see how the other side lives. My father has only recently had any health problems, and my friend has had almost none. Yes, I’ve gained some insight into their lives and into what it must be like to have a straightforward appointment with no medical mysteries, something I haven’t experienced since I was a pre-teen. What I find more interesting, though, is the reminder of why “healthy” people find it so hard to understand what we go through.

It starts before the appointment. There’s no major prep. There’s no gathering of pill bottles, lists of questions, or compiling of medical records. There’s no anxiety. There’s no worry.

Then there’s the day of the appointment. It’s no big deal to them. It’s just another item on another day, like doing laundry or buying groceries (which are also no big deal to them, unlike to me.) The appointment itself is straightforward. It’s treated like meeting with a plumber to get your pipes fixed – they ask questions, get answers, and go on with their day. There’s also more trust in the medical establishment. They don’t worry about tests not being covered by insurance, doctors not providing the right diagnosis, or any of the rest I worry about. And there’s so much trust in general! They don’t edit what they tell doctors, worried about being considered a hypochondriac. They don’t worry about being disbelieved. They state any problems and move on.

As if that wasn’t enough, there’s the followup, or lack thereof. After most of my medical appointments, there’s a parent or friend wanting to know every detail. Well ok, with my father’s current issues, we’ve been having followup calls with my mother. She wants to be there, but since she works and I don’t, and to be honest I have more experience with doctors, I’ve been going to the appointments. But for my friend, when it’s done, it’s done. I’m sure she updates her husband when they both get home at the end of the day, but that’s it. There’s no rush, no concern, no potentially life-changing news to impart.

Part of me is jealous, but mostly I’m amazed. I had forgotten that it could be like that. It’s a good reminder of why my friends don’t understand all of the crap I deal with aside from how I actually feel. They have no clue about the insurance nightmares, the anxiety, the stigma, or the huge amounts of time involved. It’s completely foreign to them. I might as well move to Kenya and expect them to automatically understand my life there.

I’ll try to remember this the next time I get a blank stare as I explain that even though I don’t work, taking care of my health is more than a full time job. Or better yet, maybe I should get them to come to an appointment with me!

Leave a Comment » | Educating, Expectations, Isolation, Rants, Support | Permalink
Posted by chronicrants

Why don’t I cry?

November 25, 2013

Sometimes I wonder why I don’t cry more about my health situation. I certainly have good reason to. Sometimes I want to, but I don’t. And I wonder why.

I just emailed a bunch of loved ones to let them know that my new, long-awaited treatment isn’t working. I thought about the many options I can try out next. I thought about the months and months of trial and error, of hope and despair, of improvements and horrible side effects, that now await me. I thought about it all, and I wondered why I wasn’t more upset.

Right now I am wrapped in a blanket. My hands are so cold that it’s hard to type. Yep, we’re getting some early winter weather here in New England. I want to take a hot shower to try and warm up, but I’m too tired to manage it. Should I want to cry?

I’m sure that part of my lack of crying is my positive attitude. I’m cold, but at least I have shelter, warm clothes, and the ability to get warmer if I have to (I can drive to a friend’s house, complain to the landlord about the lack of heat, etc.) My treatment isn’t working right now, and trying others could be tough, but at least I have options. That’s a hell of a lot more than what I had two years ago. Or even 1 year ago. Or even earlier in 2013. Overall, life isn’t that bad.

Then again, it isn’t all that good, either. My life is tough. Sometimes it really sucks. I want to date and have a job and play sports or even just take a long walk. Yeah, it sucks. But a long time ago I promised myself that I wouldn’t constantly get upset and cry over it. The thing is, I made that promise to myself about 20 years ago when I was a kid. I had always been a crier, and I didn’t want to be considered a cry-baby. Also, I was trying to prove to myself that I was stronger than my pain. That made sense back then. I occasionally cried over the pain, just like I occasionally cry now when it’s really bad. But the thing is, I still only cry when it’s really horribly extremely bad, and maybe there are other times when a release of emotion would be good for me. My health situation is much worse and much more complicated than it was 20 years ago. Back then, it was sporadic pain. Now it’s constant pain, fatigue, digestive problems, and more. Back then it didn’t stop me from doing anything other than certain sports. Now, it stops me from participating in so many important facets of my life. So why don’t I cry more often?

I don’t know what the answer to that question is. Maybe one day I’ll figure it out. Maybe I won’t. Right now I don’t think it’s important enough to worry about it actively, but I like to be self-aware, so I’ll keep it in the back of my mind and maybe the answer will come to me. In the meantime, I’m not in denial and I’m not suppressing my emotions. I know all too well what my situation is and I’m facing it head-on. And that feels good.

Plus, I have this blog as an outlet. I can’t believe I’ve written almost 400 posts now. I’ve found writing it to be very cathartic and the readers to be very supportive. So thank you all.

I admit it, I don’t have an answer. I don’t know why I don’t cry more. And right now, that’s ok.

4 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Medication, Pain, Support, Symptoms | Permalink
Posted by chronicrants

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