Blown away by support

June 27, 2012

I did the math.  Then I did it again.  Sadly, it just didn’t add up.

Let’s see, there’s rent and phone and electricity and gas for the stove.  There’s groceries and health insurance and medications and gas for the car.  There’s all the other little expenses that pop up, though not all that many any more, since I’ve been cutting back a lot.  As if that’s not enough, there’s the new naturopath and new tests and new treatments that aren’t covered by insurance.  There’s the lawyer.  And there’s no income.  I have savings, but they won’t last forever.

I was turned down for long term disability insurance.  I have hired a lawyer to appeal the denial, but of course that costs money.  If the appeal works, I would get paid in February or March and they insurance company would pay me everything they have owed me to that point – almost a year’s worth of payments.  If the appeal doesn’t work, then I’m totally screwed.  Great.

At best I need to find a way to pay for everything until March.  At worst I need to cover a much longer period of time.

My savings can last a while, and actually, if I didn’t hire the lawyer or try new treatments, I might even be able to make it last until March. Well, at least until January.  Unfortunately, I need the lawyer and I must try to improve my health.  I spoke to my parents and we agreed that I’d ask my grandparents.  My parents said they’d find a way to help me if my grandparents couldn’t, but I know it would be hard for them.  They are finally near retirement and I’d hate to see that put off for this.  Plus, my grandparents have offered to help me many times.  They want to help me, and since they can’t physically do anything, they want to financially help.

Now, I know that my grandparents have some money.  They aren’t rich, but they have enough to take care of themselves and to leave a bit to their kids.  Still, I hated to ask.  Maybe it’s an ego thing, but I’ve never wanted to take handouts.  This time I had to admit defeat.  I simply need help.

Today was the day to ask.  My stomach was in knots.  I was nauseated.  I couldn’t eat lunch (a rarity for me!)  My biggest fear was that they’d want to help (because I knew they would) but that they wouldn’t be able to give me as much as I need.  I figured $10,000-$12,000 would cover my gap.  Could they afford that much?

I steeled my nerve and began by explaining the insurance denial.  It just happened a few weeks ago and I hadn’t told them yet.  I hadn’t wanted to worry them.  Then I told them a bit more about my treatments, filling in some details from what I’d told them before.  Then I started to explain about the money.  Before I could finish asking for help, they both said that they’d give me as much as I need.  I hadn’t even mentioned the numbers yet.  For now they wrote me a smaller check, and said that as soon as I spent that, I should come back and they’d write another.  No hesitation.  No asking me what my expenses are.  I said I could pay them back if I win the insurance appeal and they adamantly said no; they don’t want to be paid back for this.  They just want to help me.

The only negative response?  That I didn’t come to them sooner.  Actually, my grandfather was a bit angry that I didn’t ask for money a while ago.  I had to explain that I didn’t know it would be an issue until 2 weeks ago, and even then I hadn’t figure it all out yet.  He was only mildly placated.  He made me promise over and over and over that I would tell him immediately if I needed any more money, or even if anything else changed with the insurance and of course with my health.  The last thing he said before I left was reminding me of that promise.

Our family is far from perfect.  I’ve written before about my strained relations with my sister.  And there are plenty of other issues too.  But I’ll say this: we all support each other, no questions asked.  Having the financial support helps a lot.  But having the emotional support makes me feel like maybe I can handle all of this crap after all.  I could never put a price tag on that.

P.S. Don’t my grandparents just have the best smiles?

Wondering how to eat

June 25, 2012

As the next step in my last-ditch effort to improve my health, I am starting a new diet.  This diet is titled “The Anti-Inflammatory Diet” (if this link doesn’t work for you, see below) and should really be called the “Eat the Same Thing Every Day Diet.”  So here’s what I’m asking from you:


Some people will look at this diet and think it’s easy, but there are a few things to consider:

  1. This was a huge accomplishment for me.  Until 3 years ago I could hardly cook.  Now I can cook a handful of meals decently and a few really well.  And none of them will be allowed on this diet.  Learning those took a long time and now I need to start over.
  2. I don’t like to cook.  I will do it because I have to, but I won’t spend hours at it.
  3. Some people have a natural ability to understand which foods can be substituted for others, and which flavors will go well together.  I don’t have that.  I have the opposite of that.  I have no clue.  I can’t make things up.  I need solid, explicit recipes.

So yeah, it’s a bit intimidating and overwhelming.  Oh, and one more thing is that I won’t use the oven for the next few months.  I react badly to heat and humidity, both of which Boston has plenty of in the summers.  I’ll use the stove, but I won’t stand over it for long periods of time.  Last summer I did 90% of my cooking in the crockpot and I’d love to do that again, so crockpot recipes are especially welcome.  But at the moment, I’d love anything that will add to the contents of my currently-pathetic refrigerator.

Having said all of that, PLEASE PLEASE PLEASE send me any recipes or useful web sites that could help me with this new challenge.  This is the first week and I’m already out of ideas!

I’m looking for three things:

  1. Main courses
  2. Snacks besides fruit and nuts, especially snacks that can survive a day in a purse
  3. Easy small meals for when I just don’t have the energy to cook, and I’ve already eaten whatever was in the freezer.  I used to do eggs (they’re on the bad list now) or oatmeal (that’ll be my breakfast every day now) with peanut butter (also on the bad list.)  I need something that would be that level of effort.  You know, for days like this.

I will be unbelievably grateful to anyone who can help me out.  And if cooking isn’t your thing either, any messages of support will also be gratefully accepted.  You can comment here or tweet me @CIRants or email me at msrants at gmail

This isn’t about complaining, it’s just about being overwhelmed.  I’ll do whatever it takes to make this work… as soon as I figure out how.

Thank you in advance for your ideas!

The Anti-Inflammatory Diet:

  • No gluten
  • No dairy products
  • No refined sugar products
  • No Corn, tomatoes, peppers, eggplant
  • No pork, cold cuts, bacon, hot dogs, canned meat, sausage, shellfish
  • No alcohol, caffeine-containing beferages, soy milk, soda or fruit drinks that are high in refined sugar
  • Foods high in fats and oils, including peanuts, refined oils, margarine, shortening, hydrogenated oils
  • Additional specific foods to avoid: oranges, corn, creamed vegetables, soybeans and other soy foods, peanuts, peanut butter, cashews, cashew butter, mayonnaise, spreads, canola oil, ketchup, mustard, pickle, relish, chutney, soy sauce, barbecue sauce, white or brown or refined sugars, honey, maple syrup, corn syrup, high fructose corn syrup, all artificial sweeteners, all candy

***Note: This diet was suggested to me by a licensed naturopath.  I am not suggesting or recommending it for anyone else.  To be honest, I’m not certain that it will even work for me, but I’m taking a shot at it.  If you think it makes sense for you also, please speak to a trained practitioner.***

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.

But I want to work!

June 20, 2012

I was at a support group for people with chronic pain.  This group meets in the mid-morning on a weekday so, unsurprisingly, none of us are currently working.  As we went around the room talking about recent frustrations, I kept hearing a theme: I want to work.  One woman talked about the stress of having to declare bankruptcy.  Another spoke about getting turned down for Social Security.  I was having problems with a private long term disability insurance company.  Many spoke about money troubles.  A couple mentioned not being able to take care of their kids.  Several didn’t like having to rely on their spouse for financial support, as well as help around the house.

What do these all have in common?  We want to be well!

As I listened to everyone speak, I was thinking how much I’d love to have a transcript of that meeting to show all of the doubters.  There are too many random people in society who think that we’re just trying to get “easy” money.  There are the politicians and bureaucrats who seem to think we’re all trying to scam the system.  There are the insurers who insist that we’re not really too sick to work.  And yet over and over I heard people saying that they wish they could go back to work.  Some said it indirectly and others used those words, but we were all saying the same thing.

I hated my last job.  I won’t pretend otherwise.  But I still want to go back to work.  I want an income, I want independence, and I want control over my own life.  Right now, I would love nothing more than having the choice of returning to work.  Sadly, that is out of my control, just as it’s out of the control of the others in the support group.  If only the doubters understood just how much we want it.

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.

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