How much do you know?

September 12, 2011

What’s the biggest outside influence on your health?  I’d argue it’s politics.

 

It’s easy to get a bit self-absorbed when you’re sick.  That’s fine to do occasionally.  Then when you want to reach out, you probably turn to family and friends, right?  That’s good too.  But I hope everyone takes some time to educate themselves on local, state, and federal politics, because they do affect you.

 

Massachusetts has a lot of potential ballot questions coming up next year.  Some will affect me more than others, and I don’t know which.  Some of the questions could be about medical marijuana, doctors prescribing life-ending drugs, and changes to state health insurance regulations.  I’m sure each of these will eventually have an effect on me or on someone I know.  What are the laws in your state?  Is anyone looking to change them?

 

I’m not suggesting a Big Brother role here, but politics affects all of us.  Some of us may end up on Social Security Disability Insurance one day.  Some of us may need to stop working and rely on food stamps.  If you’re reading this, I’m pretty sure that health insurance matters to you.  Of the many health insurance changes that could come about as a result of President Obama’s plan is stopping health insurance companies from excluding someone based on a preexisting medical condition.  That means I could get health insurance anywhere in the U.S.!  For someone reading this in Canada or Sweden, that may sound strange.  For anyone in the U.S. with a health issue, it sounds like a fantastic safety net.  We’ll still have to pay for it (unless you qualify for Medicaid) but at least we’ll have it!  And what about legalizing medical marijuana?  I know that’s controversial.  I also know that when I took some in California last year, it was the first time in years that I wasn’t queasy.  I could even eat without feeling queasy!  That was a fantastic feeling, and one I’d like to have again from time to time.

 

My point is simply that politics affects us all, whether we want it to or not, so we might as well get educated and learn what is about to have an influence on our lives.

 

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Leave a Comment » | Decisions, Educating, Politics, Rants, Raves | Permalink
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City living: good or evil?

September 11, 2011

Now don’t get me wrong, I generally love living in the city.  It has so much to offer.  But that doesn’t mean there aren’t days that are incredibly difficult.  And in all fairness, if I lived in the city but had a driveway, this wouldn’t be an issue.  Sadly, I don’t have a driveway, so the next few weeks are going to be very difficult.

 

Last year I got rid of my relatively-young-but-laden-with-problems car.  I thought about not getting a new car.  For the first time, I was using public transportation to get to work.  I could walk to the grocery store.  I could use Zipcar for trips outside of the city.  But now matter how many work-arounds I considered, I always got stuck on what I’d do on the days I couldn’t walk even the two blocks to the closest Zipcar spots.  What then?  I’d be stuck.  So I got a car.  3 weeks later, someone crashed into it while it was parked.  It was totaled and I couldn’t drive it for 3 weeks while it was getting fixed.  Just a couple weeks after it came back from the shop, it got stuck in the ice that had formed where I’d parked, so I couldn’t drive it for about a week.

 

Now, the city is doing construction in my neighborhood, so from 7am-7pm I can’t park anywhere near my apartment.  Depending on which notices are correct, this will be for 2 or 3 weeks.  I’ve been asking friends if they might have an extra space in their driveway that I can use.  If not, I’ll park in another neighborhood, then walk or take the bus home, and go back every few days to move my car (they ticket if you stay in the same space for too long, even when it’s a legal space!)  I just have to hope that I don’t need the car for the next few weeks.  Lately, I’ve been driving to work more than taking the T (our subway) because I’ve been having fatigue and/or pain.  I really hope that stays at bay for a while.

 

I love living in the city overall.  I really do.  But I have to ask myself: why did I buy a car if I keep having weeks at a time that I can’t even get to it?

 

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1 Comment | Frustration, Intrusions, Limitations, Parking, Rants, Symptoms, Unpredictable | Permalink
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Planning for the unpredictable

September 10, 2011

The air is cool and clear, the sun is shining… it’s a gorgeous day here in Boston.  It’s a day to be outdoors!

So I guess I shouldn’t have been surprised when my friend called me up and asked if we could switch our plans from being indoors this afternoon to taking a walk around a pond.  It’s a great idea, actually.  I bet it’ll be beautiful, and I’ll love watching her little girls run and play.

I give a lot of credit to my friend.  She was very careful to make it clear that we could stay closer to home or do something else if I didn’t feel up to this.  She’s really great that way.  We’ve been friends a long time, and she “gets it.”  The problem is, I want to do this.  And I do feel up to it right now.  I just don’t know how I’ll feel afterwards.  I might be completely exhausted.  And I have plans to celebrate a friend’s birthday tonight, something I’ve been looking forward to for a long time.  So if I walk around the pond, will I be too tired later for anything else?  I won’t have much time to rest in between, unfortunately, because of how things time out.

I’ll just have to take a chance, and try to do both, and hope I don’t regret it later or tomorrow.  I hope this works out!  It would be so nice to be able to predict these things, but that’s just not possible.

 

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Leave a Comment » | Decisions, Expectations, Frustration, Limitations, Rants, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
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Religion and/or/with/versus Chronic Illness

September 9, 2011

I don’t give much thought to religion and its relationship with chronic illness anymore.  I suppose I used to, but that was a long time ago.  In fact, I’m only thinking about it now because I got an email today that it’s the topic of this week’s Chronic Babe blog carnival.  It’s an important topic, though, and like with most other things, I have very definite opinions about it, so even though this is less of a rant or a rave and more of a reflection, here goes….

Like most Americans, I was raised in a household with religion.  In our case, we were not devout.  We attended services on the major holidays, celebrated with family and friends, and occasionally, but not consistently, celebrated some minor holidays.  I attended religious school for many, many years, so I knew a lot about how things were supposed to work.  I knew the prayers, the customs, and the bible stories.  The problem was, I started doubting from a  young age.  When I was three, I asked the teacher at my religious preschool, “If god made the universe, then who made god?”  I was told not to ask that question.  I was told that god just was.  Maybe that was the right answer for some three-year-olds, but it wasn’t the right answer for me.  That started me doubting, and the doubts never went away.

So that’s my pre-illness religious background.  When I was 12, I still went to religious school, still went to services, still celebrated holidays.  I also now had some mysterious pain.  At 12, I really didn’t think too much about some higher being giving me the pain, and I never considered praying for a higher being to take the pain away.  Having never believed that a god of some sort controlled the minutia of my life, such as my friendships or my grades or whether or not I got a particular birthday gift, this seemed no different than anything else.  I celebrated the holidays in a cultural way, and I thought about G-O-D, but I didn’t know what exactly I believed.  I was scared not to believe (some of those bible stories are scary!) but I didn’t have that “feeling” that so many adults talked about.  When I said to myself, “Please make the pain go away!” I wasn’t praying to any being in particular.  I was putting words to the hope that I felt that maybe, someday, things would get better.  Maybe that’s all prayer is?  I don’t know.

Everything changed in college, as it so often does.  I was living on my own for the first time.  I went to services more, actually, at the beginning, because I felt a connection to the people there, and it reminded me of home.  After I while, I realized that I wasn’t going for the services anymore, I was going only for the people and for the community.  Over the years, I gave it more thought, and finally admitted to myself that I just don’t believe in any higher being. My guess is that illness or no illness, I never would have.   To me, the monotheistic god, the Greek gods, the ancient Egyptian gods, and the Flying Spaghetti Monster all seemed equally unlikely to exist.  Still, the illness gave me an interesting perspective.

On the one hand, why would I want to believe in a being that would make me ill?  Or in one that wouldn’t make me better?  I’m a good person.  I help others.  I volunteer at nonprofits.  I go out of my way for strangers.  Why would I want to believe in a being that would do this to me?

On the other hand, I see religious and spiritual people who take great comfort in their beliefs.  I am incredibly jealous of them.  I want that.  Who wouldn’t want that?  Going through the fear, uncertainty, and difficulties of chronic illness, how nice it must be to have a proactive course of action (praying) at your fingertips all the time.  How wonderful to have a community of strangers ready to step up for you.  How nice to have hope.  Of course I want that!  I want that, but I can’t manufacture beliefs for the convenience of a support network and what I think of as false hope.

It seems to me that most people either become much more religious or much less so after a big diagnosis (or the diagnosis of a loved one.)  As far as I can tell, this happens for the reasons I just gave: either they can’t stand to believe in a being that would do this to them, or they need to believe in a being that can cure them.

The answer is different for everyone.  My path has led me to where I am now.  Maybe one day my beliefs will change.  Maybe they won’t.  I think the important thing is to feel comfortable with where I am now.  Thankfully, I do.  I get frustrated when others try to force their religion on me, but that has little to do with my health, and more to do with their desire for proselytizing.  We all believe in different things.  Thirty years after preschool, I don’t believe in god.  But I’m excited to celebrate the holidays with my family!

 

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2 Comments | Decisions, Expectations, Politics, Rants, Raves | Permalink
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