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.

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.

A homebody, but not always by choice

June 12, 2012

It’s 9pm on Tuesday night and I am sitting in my apartment typing this.  The last time I went outside was on Sunday afternoon.  I wish I could say this never happens, that I never get confined to my apartment, but sadly, it happens far too often.

So many people comment on how good I look, or on how cheerful I am, or on how well I seem to handle all of my health problems.  What they don’t understand, even when I try to explain it, is that the reason I always appear so well to them is that they simply don’t see me when I’m not doing well.  Simple.

They also don’t understand that I’m not hiding from them.  It is very rare that I stay home so that someone won’t see me looking or acting ill.  It’s actually the opposite – they don’t see me looking or acting ill because when I feel that bad, I don’t have the energy to leave the house anyway.

So that’s where I am right now.  I felt so lousy yesterday that I skipped my errands.  I still felt horrible today, so I canceled my plans.  When I do eventually see people I’ll appear to be doing better, because if I don’t feel up to leaving the house, then I’ll just stay home.  I’m sick of my pjs and I’m tired of sitting on the couch, but right now, it’s really all I can manage, so I’ll just have to go along with it.

Oh, and in case you’ve been following and you’re wondering, yes, this is my body’s payback for the other night.  And it’s completely worth it.

My family by choice: they get it

June 10, 2012

We were all born into a family.  Everyone’s family is different.  Some people grew up with their family, some didn’t, but either way, we didn’t get to choose them.

On the other hand, there are some families you actually can choose.  These are friends who are beyond friends.  These are the friends who you may talk to every day, or maybe you don’t talk to them for a few years, but whenever you do talk, it feels like no time has passed at all.  These are the friends who you can share almost anything with.  They are there for you no matter what, and you are there for them no matter what.  They are your family by choice, a term that I actually got from one of these friends of mine.

I have talked about close friends on this blog many times before, but this weekend was extra special.

This was a really shitty week.  We had a lot of cloudy, rainy days, which wasn’t helping my seasonal affective disorder.  On the fourth cloudy day in a row, I found out that my long term disability claim was denied.  I gained 2 pounds in 2 days and felt bloated, which made me question if the gluten-free diet was no longer working.  It was Pride week, and I knew I wouldn’t have the energy to do everything I wanted to do.  I was invited to a wedding, and knew I wouldn’t have the energy to go to both the ceremony and the reception.  And to top it all off, it was my birthday, which made me think over and over about my shitty health and about what the future holds in store.  I still don’t know how I made it through all that.

As if that wasn’t enough, a friend announced that she was coming to town this weekend.  I’d known she would be coming at some point, but they hadn’t set a date until just a couple of weeks ago.  This was really lousy timing for me, but we hadn’t seen each other since last fall, and she’s one of the afore-mentioned close friends, so I wanted to be sure and see her.  It was decided that everyone would get together Saturday night at one person’s house, and I would do my best to get there after the wedding.  There’s never any need for us to do anything fancy – we just get in a room together and the entertainment takes care of itself.

The wedding was tough.  When I got the main course and had trouble lifting the knife to cut my chicken, I knew it was time to go home.  I hated to leave so early, but I just couldn’t take it anymore.  I was thoroughly exhausted.  Just making small talk with a bunch of strangers was enough to thoroughly wear me out.  I wanted to head home, but I didn’t want to miss out on seeing my friends, so I went to see my friends.  For any other people I wouldn’t have gone, but these women are different.  We’ve be friends for more than 20 years.  We’ve been through first dates, first kisses, fighting parents, fights with siblings, junior high, high school, learning to drive, having sex, college, grad school, first jobs, many jobs, deaths of loved ones, illnesses, marriages, having children, buying homes, and everything else you would expect to experience between 3rd grade and your mid-30s.  Like I said: family by choice.  My point is that these are the only friends who I let myself feel like crap in front of.  They understand and they don’t judge.  I don’t have to hide from them.

There were 6 of us there, plus two husbands who popped in occasionally but mostly stayed in the other room watching a ball game.  They’ve known us long enough to know we need our space to be utterly immature.  For some reason our maturity level drops down to adolescent level when we’re together, so maybe they were actually hiding from us.

It was the best time I’d had in ages.  I was exhausted, and I knew I’d feel crappy the next day (I was right) but it was worth every second.  It turns out, in addition to getting everyone together, it was also a birthday celebration for me!  A second friend also came from out of town!  They’d apparently been planning this for over a month.  It was perfect and simple and a wonderful treat.  I didn’t tell them that I didn’t want to focus on my birthday this year, but I guess they figured it out anyway.  We talked and laughed and had a marvelous time, and then they sang me happy birthday and brought out the decadent gluten-free chocolate cake (above) and the homemade (!) ice cream.  It was perfect.  I hadn’t laughed like that in ages.

Now remember, I was coming from the wedding, which I left because I felt lousy.  At the get together, no one commented on my looks for good or bad (other than my newly dyed hair, of course), and no one talked about my health.  One friend asked about the insurance issue, but asked it as “Can I ask about it?”  I said I didn’t want to talk about it and she dropped it, just like that.  Fantastic.  They must have known more than I said, because they fetched me water and kept offering to get me things, which they don’t usually do.  The truth was that I felt really dizzy most of the time, and was glad not to walk around much.  I mostly sat in a chair and talked, and when I needed to, I rested my head on the table.  And no one said a single word.  Perfect.

I went home that night tired, dizzy, achy, and so so happy.  I was lucky beyond lucky to find these women early in my life, and I never take them for granted.  We have always been there for each other, and I hope that we always will be.  I couldn’t have chosen a better family.

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