Suspicious of hope

August 30, 2012

We mourn the loss of our health the way we mourn other losses.  For me, I went through the 5 stages of grief back in my teens, when I realized the daily pain was going to be a permanent part of my life.  Then I went through them again at age 23, when I was diagnosed with an autoimmune condition for the first time.  These were different kinds of losses.  First I had to accept the current symptoms, then later I had to accept that things might get worse eventually.

About 10 years later, now I’m experiencing something new: hope for improvement.

At first, with the pain, there seemed to be no point in hoping for improvement.  After the initial rounds of doctor appointments, tests, and surgery, it was clear nothing would change.  I could accept that, because its effect on my life felt limited.  Unpleasant, horrible, obscene, but limited.  Later, with the autoimmune diagnosis, there still seemed to be no hope for improvement, and I foresaw a very difficult life ahead, but that was in the future and I was living in the present, so even though it was in a part of my mind, I tried not to focus on it.  More recently, of course, my life was altered drastically, and I didn’t feel anymore like I was really living my life, but more like I was just trying to get through it.  This is no way to live, but what choice did I have?  And that’s where the hope came in.

Now I picture my future as being better than my present and that worries me.  I worries me mostly because I have no idea if it will be true.  I picture a better future in part because I have some medical reason to hope, because I am pursuing new treatments and so far they have helped a bit.  But I also picture a better future because I refuse to picture a future like my present, or possibly even something worse.  I picture a better future because it’s what I have to live for, and I need that ideal.  But is it realistic?  Is it even possible?

I am scared to hope.  I am scared that I will get my hopes up and will then be crushed when I don’t improve.  My dreams are simple: to go back to work, to date, to travel a bit, to maybe even have a family one day.  But to anyone who has been ill like this, these dreams aren’t simple.  They aren’t easy and they aren’t a given.  Dreaming of these things could be a way of setting myself up for a huge disappointment.

How can I stop?  I honestly don’t know.  It isn’t as though I spend an hour daydreaming about what I’d do if I felt better; it’s much more subtle than that.  I hear about an interesting job, and wonder if that’s something I might want to do when I go back to work… and then I remember that I don’t work.  I remember a great trip I took and think about going back… and then remember that I can’t travel.  I think about how much I should save up for my next car… and then remember that I have no income to save.  I picture moving to a smaller apartment until I meet someone… and then remember that I’m not dating.  It’s hard to shut off these automatic projections of the life that I always assumed I’d have.  I suppose that in time, I’ll change my frames of reference, but I’m just not there yet.  So should my goal be to stop dreaming?  That’s a horrible goal.  And yet…

So a part of me is continuing to hope, even while another part wants to run away from any sign of hope.  And in the end, I just hope, desperately, that a little bit of what I’ve been dreaming of will come true.


Holes in the so-called safety nets

August 28, 2012

There’s this idea that the so-called social safety nets are just hanging out, waiting for us to jump into them whenever we feel like it.  To listen to the politicians speak, these safety nets are easily gotten, easily abused, taken for granted, and a huge waste of money.  If you don’t live in the U.S. and/or don’t know what I’m talking about, check out the links for explanations.

I can’t speak about every type of “safety net” because I haven’t tried them all.  And I can’t speak to all of the politicians’ points.  But I can definitely say that these services are not so easy to get!

In this fight for services, I have a lot going for me: I’m intelligent, I am well educated, I have unlimited internet access and my own private computer, I am well organized, and I used to deal with red tape and bureaucracy on a regular basis at a previous job.  So even while other people struggle, this should be really easy for me, right?  Yeah, right.

A couple weeks ago I made it very clear how I feel about Medicaid.  And I was thankful that at least in my state, I’m eligible to apply for Medicaid, called MassHealth here.  Of course, there’s a downside: I followed all the rules and it’s still not working out well.  When my former employer’s benefits office told me I was losing my health insurance in just two short months, they told me that it would take 3 weeks for my MassHealth application to be processed, so I should wait to apply.  If I applied too soon, my current insurance could get in the way, so I should time it to get MassHealth just as my insurance ran out.  I called MassHealth’s customer service line several times and spoke to three separate people.  Each person told me the application would take 3 weeks to process.  The automated system said that the current processing time is 15 business days.  Ok, so it’s 3 weeks; that’s not so bad.  But it turns out, it’s 3 weeks to process the initial application!  After that application, it takes 90 days to process the supplemental disability application!  The supplemental disability application states that this time can be speeded up by including medical records, so I included all of mine back to January 2011, even though they really only needed the 12 months..  Today I spoke to the office that handles those applications.  It was explained that they are still required to contact my doctors and to give them 30 days to respond with my medical records.  Yes, these will just be duplicates of the records that I already provided.  So what was the point of including those records?  None.  I did not save time, I just spent more on postage and wasted paper.  Fantastic.  So now I will have a 2-month gap between when my insurance ends and when I could even potentially be approved for MassHealth.  Of course, they could still deny my application.  And what am I supposed to do in the meantime?  Well, I can stop seeing doctors and taking medications, but that’s not entirely an option.  There’s one medication that I can’t stop without doing serious harm, and another that would do moderate harm.  I can either pay for these out of pocket myself, or I can spend $550 per month for COBRA.  Great options.  But I guess it’s my own fault – I followed the rules.

Services like housing vouchers and food stamps are shrouded in mystery.  Even though these are state and federal programs, they are handled at local levels.  It takes a few phone calls to find the right office.  This office will not provide information by phone and there’s nothing helpful online.  They do not make appointments.  They simply say that I should show up with my paperwork, then they’ll tell me which services I’m eligible for.  I don’t even know which services they handle!  So the only way to find out what I might be eligible for is to show up at this office, but of course showing up can be hard for people with health problems.  And I’m slowly learning about others offices that might be able to help with this kind of thing, but only by asking for advice from other people who have gone through this process.  As far as I can tell, there is no one central calling center or web site to provide information on what services exist for people with no income and an inability to work due to health problems.

And then there’s Social Security Disability.  Should I even discuss this?  I’ve found different statistics for how many people are denied the first time they apply, but the lowest number I found is 50%.  If these numbers are right, that means that more than half, possibly much more than half, of applicants are denied the first time they apply.  And quite a few are denied on appeal, too.  The application is long and arduous.  It feels nothing like a safety net and everything like a test.  Filling out the application is a test, waiting to hear back is a test, going through the appeals process is a test.  And if you pass?  You get enough money each month to pay your rent.  Maybe.  If you’re lucky.  Of course, there won’t be much money left over for frivolous things like food, but that’s what food stamps are for… if you can figure out how to apply for them.


Remembering spontaneity

August 27, 2012

A friend called me up the other day and asked if I wanted to hang out.  He meant right away.  I didn’t hear my phone ring and by the time I got the message it was too late, but it really made me wonder: when did I lose all of the spontaneity in my life?

I remember a time not too long ago when I would find myself without plans on a Saturday, so I’d pick up the phone and call a few
friends to see who was around.  I remember a time when I’d decide at a moment’s notice to go away overnight.  It got to the point that I’d pack a bag and be out the door within 30 minutes.  Then I started keeping a toiletry bag always packed with spares of everything, so I could leave even faster.  A last-minute date?  A random outing with friends?  A local getaway?  Yes, please!

Now everything has to be thought through.  Do I have enough energy?  Do I need to save some spoons for tomorrow?  (If you don’t know what these spoons are, definitely click the link.)  What will I eat that satisfies the diet?  Can I tolerate the heat?  How much walking will there be?  Will it cause more pain?

These are all completely reasonable, understandable questions.  They make perfect sense.  And they’ve killed my sense of spontaneity.

I’m not suggesting that I have to be spontaneous every day, but it would be nice to occasionally do something that wasn’t completely planned out in advance.  I want to not know what I’m doing tomorrow (and not knowing if I’ll be watching tv versus reading emails doesn’t count!)  I can’t travel and that’s fine (well, it’s not fine, but I have no choice right now) but that doesn’t mean I can’t do something at the last minute closer to home.

I’m not ready to instigate something spontaneous.  I know that.  But I think there’s a glimmer of hope.  When I got my friend’s message my first reaction was that of course I couldn’t do something without notice!  But then I thought about it, and realized that, actually, I could, and I’d probably have a wonderful time.  When I looked at the clock, I realized I’d missed my chance (he only had a short time free,) but just remembering what it was like to make a spur-of-the-moment plan was fantastic.  Now I have to make sure I actually do that.  Soon.


Socially limited

August 23, 2012

There’s a woman I know who I really like.  She’s a friend of a friend and we belong to some of the same social groups, so we see each other around, but we haven’t hung out too much outside of that.  Then this week she invited me to her place to watch a movie and hang out with a bunch of other people.  Social time!  I could hang out with someone I like, and hopefully meet some of her cool friends!  I feel like I never get to be social anymore.

And today was no exception.  I just don’t do as well in the evenings.  I have more energy earlier, but people are at work then.  I had my doubts all day long, but I kept hoping I’d make it.  I took a shower so I’d be all nice and clean.  I planned out what I’d bring for food, since I always have to carry food while I’m on this whacky diet.  I thought about what energy threshold would determine if I’d walk or drive that particular distance, and if I had to drive, what route I’d take to get around the road construction near me.  I had it all figured out.  And then I fell asleep.

Taking a nap is generally not a good thing for me.  After a nap, I don’t feel right.  Of course, this wasn’t an intentional nap.  I was reading a book and I fell asleep, simple as that.  After I woke up I felt groggy and just “not right.”  I finally gave in to my rumbling tummy and had a snack.  Then another snack.  Then an early dinner.  I shouldn’t have been so hungry after the huge lunch I ate, but I was.  And I still felt off somehow.  I rested.  I relaxed.  I knitted.  And I still didn’t feel right.  The clock was ticking.  I should have left by now.  I watched tv. I should be there by now.  I read the news.  They’ve probably started the movie.  I washed the dishes.  They’re probably all having fun right now.

I finally gave up.  If I was going to go, I’d have left already.  If I didn’t feel up to leaving by that time, I knew I just wouldn’t be up to it at all.  There was a time I’d have pushed myself to go anyway.  I’d have felt bad the next day, but I would have pushed through, and by the second day I’d be ok.  But those days are long gone.  If I pushed myself today, it could mean 2-3 stuck inside resting, and it just wasn’t worth it.  I have other, daytime plans over the next few days.  I’m in my early 30s but going out in the evening is just out of the question right now.  Sometimes life just sucks.

Thank goodness I can still go out during the day most days!


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