The subjectiveness of a “good” day

July 2, 2012

Sometimes I write about what a great day I’ve had healthwise.  Sometimes I write about a lousy day.  Right now, I’m not sure what I’m having.

One year ago I was struggling to get through each day.  9 months ago I left my job because I just couldn’t manage.  6 months ago I couldn’t read books because I always fell asleep.  I needed naps many days.  I could barely socialize.  3 months ago I had slightly more energy.  I wasn’t napping as much.  I could go out more, but only slightly more.  And today I don’t know what my limits are.  I know I have them, but I don’t know how to define them.

Ideally I wouldn’t have limits, or at least I’d have the same limits as most of my friends.  Chances are that I’ll always have extra limits, and I can probably live with that as long as they’re a lot fewer than what I’ve been dealing with in the last year.  The thing is, in the last year they’ve been changing so much.  Six months ago I wouldn’t have tried to visit with my grandparents for an afternoon and then come home, relax for a while, eat dinner, then take a walk in the evening.  But recently I did that!  For many people this wouldn’t seem like much: have a conversation for a few hours, relax for several hours, then take a 15 minute walk?  But for me that was huge.  I could probably do that today if it wasn’t so hot out and that’s exciting.  But I know I couldn’t do that every day, and not even necessarily any day.  So where’s the line?

I just don’t know.  The 1-10 scales aren’t accurate because they depend not only on memory and perception, but also on mood and on the status of that exact moment.  I could keep track of how I feel each day in a journal or using an app, but it still wouldn’t tell me what my limits are.  Clearly the big problem is that I’m afraid to push my own boundaries.  After so many bad results, now I want to play it safe.  The result is that sometimes I don’t realize that I could do more, or I know I could do more but I don’t know how much more.  A “good” day is now one where I don’t feel lousy.  I need to change that, to make it so that a good day is one where I do more than I did last week, and where I still don’t feel lousy.

I guess that’s something to aim for tomorrow: a new kind of good.

Leave a Comment » | Expectations, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Know –> Hope

June 22, 2012

I wish people would stop trying to reassure me.

I’m in a huge amount of pain right now.  It’s probably from the storms we’re getting, but of course it’s always possible that it’s from something else.  A friend said that, based on the weather forecast, she’s sure I’ll be fine in a couple of days.  But she can’t know that and I hate when people say it.  It could be weeks or months before I get back to my “normal” amount of pain.  And yesterday I was discussing new treatment possibilities with my mother and talking about the money issue (that’ll be in a future post), and she said that she was sure I’d get back to work sometime, but she can’t know that.

They mean well.  I really do appreciate that they want me to feel better.  But saying these things is just about the worst thing they can do to “support” me.  For 20 years I’ve heard people say that they know that I’ll get better and guess what?  They were wrong every time.  It’s like saying that I know you’ll win the lottery.  Or even that I know you’ll get that job you interviewed for.  I don’t know those things.  Just like my friends and family don’t know that my health will improve.

Folks, do me a favor and just change know to hope.  I love it that you hope I’ll get better.  Just please don’t think or pretend that your desire will become fact.  Stick with that and it’ll all be good.

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Rants, Support, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

A new low: watching my health affect my parents’ retirement

June 17, 2012

Over a nice Father’s Day dinner, my parents and I started to talk about their plans for cleaning out their house.  They moved into that house more than 30 years ago, when I was just a toddler, and it’s finally time for them to move.  I know I’ll be sad when the time comes for them to leave it, but right now I’m really happy for them.  The house is a drain on them financially, mentally, and emotionally.  The houses they are looking at are new, filled with sunlight, large, and in great 55+ communities.  Plus, because of where these places are located, they are cheaper than my parents’ current house!  This will be a great move.

They decided to put the house on the market next spring, and I mentioned that at dinner in relation to how much time they have to clean out the stuff that has accumulated over 30 years.  That’s when they dropped the bombshell: they aren’t so sure of the date anymore.  They gave a couple of obvious excuses, but then pointed out that I might need to move in with them, and that would be difficult if they moved, especially if it was a 55+ community.

This floored me.  It’s not like it hadn’t occurred to me that I might have some financial problems paying rent in the near future, but somehow I kept ignoring the reality of it.  I have enough savings to last at least a few years (if I drain my retirement account too and live very cheaply), and it’ll be even longer if LTD comes through.  Then again, I might really be stuck at some point.

My parents and I get along really well, and I think we could live together pretty happily except for two things (from my perspective, at least):

  1. I think they should get to enjoy their empty nest.
  2. I think I should get to enjoy my independence.

I have worked hard for many years to save up a decent amount of money.  I am in my 30s and should be enjoying life.  I should not be forced to move in with my parents.  But more than that, my parents have worked hard for many years to save up the money to retire.  They are in their 60s now, will retire soon, and should be enjoying their new-found freedom.  They should not be forced to support their grown daughter.

There are many illness-related reasons why I may end up living with my parents but I truly hope it doesn’t happen.  It wouldn’t be fair to me or to them.  Especially to them.  They have taken care of me and raised me and it’s time for them to live their own lives.  This shitty illness shouldn’t be a drain on them.

But I am incredibly lucky that they are willing to turn their lives around to take care of me.  Damn, I’m lucky.

2 Comments | Expectations, Frustration, Kindness, Limitations, Rants, Support, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

Long term disability insurance: Navigating a system that is designed to screw us

June 15, 2012

I’ve written about the roller coaster effect before, and it’s happening again now.  This time it’s both physical and emotional, not to mention financial.

In addition to all of the irritating, difficult, painful physical problems, I’m also dealing with bureaucratic crap.  I wrote last week that the long term disability insurance company is denying my claim for benefits, but it turns out that it’s worse than I’d thought.  As it turns out, they aren’t suggesting that I’m not ill.  Instead, they are saying that I’ve been sick for a long time and they see no evidence that it’s gotten any worse.  Basically, if I was well enough to work a year ago, I should be able to work now, too.  But how do you prove worsening fatigue?  I don’t have a blood test or MRI for that.

Then it gets worse.  According to the lawyer I spoke to (who came highly recommended by friends who used her for their own SSDI claim) I will have an extra problem because I did not see a doctor in the few weeks leading up to my leave from work.  In fact, my last appointment before leaving my job was 2 months earlier.  At that appointment my doctor and I discussed the possibility that I might have to stop working, but I don’t know if that was recorded in my medical records.  I think it’s time to cough up the money and get a copy of my own records.  I wish someone would have told me that life would be easier if I saw my doctor in person before leaving my job, instead of just speaking with her on the phone 4 separate times.  I’d have gladly done it, if I’d only known.

The lawyer talked about the many steps we would take to appeal the LTD denial, including getting letters from my doctors and from friends and family, as well as hiring a vocational expert to study my case and write a report explaining why I can’t work.  This all sounds wonderfully proactive, but there’s one part that makes me very nervous: the lawyer isn’t confident enough in my case to take it on a contingency basis.  Damn!

So basically the system is designed to screw us.  I got insurance and paid my premiums, and the company denied my claim to save themselves money.  In order to get them to pay what they rightfully owe me, I have to spend a lot of time and energy and effort and money (none of which I have any extra of) to hire a lawyer.  If I ever get well (or well enough, at least) I am going to fight this system.  I don’t know how I’ll do it, but I will get it publicized, I’ll get my legislators involved, I’ll do whatever it takes, but this simply can not be allowed to continue!  But first I need to get my own claim approved and focus on my health.

And in case you’re wondering, the appeal will take approximately 6 months and cost me $7000-$10,000, plus expenses.  Expenses are for things like paying for copies of medical records, paying for the vocational expert, etc.  If we lose, I’m out that money.  If we win, the insurance company owes me $30,000 per year and they will pay me what they owe me from the date I became eligible a few months ago.  They will not pay the legal expenses I incur.

Yep, the system sucks.

Oh, and of course this is also at the same time that I am looking into practitioners, tests, and treatments that will not be covered by my health insurance, I feel like crap daily, I am enduring the most stress of my entire life, and my scant energy should be used to research my treatment options and to recover.  Like I said, this system is designed to screw us.

3 Comments | Educating, Expectations, Frustration, Healthcare, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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