A little support from well-known strangers

August 8, 2012

Last night was a bad night.  A very very very very very very very bad night.

After 6 weeks on a strict elimination diet, I thought I was done with the bad GI episodes.  The daily and near-daily nausea, diarrhea, constipation, cramps, and abdominal pains were gone and I was thrilled.  I also hadn’t had an episode in a while.  For me, an “episode” involves diarrhea, nausea, and abdominal pains so bad that I start to wish for death.  An hour feels like 10 hours and I wonder if it will ever end, even while a little voice in my head tries to tell the rest of me that it’s only temporary.  It’s hard to believe that voice.

I love Tuesday nights in general because it’s the night of the Chronic Babe chats.  I rarely make plans in the evenings, but when I do, I try to avoid Tuesday nights.  There’s a great community there that’s so different from anything else, and I always leave the chats feeling better than I did when I started.

So last night a friend wanted to come by to pick something up from my place.  I told her she’d have to leave by 9pm because of the chat and she completely understood.  I felt a bit off all afternoon, and 10 minutes before she was due to arrive I started feeling really lousy.  I didn’t cancel, though, because I figured she was already on her way and I knew I could always kick her out if need be.  She’s an old friend who understands.  Besides, I was trying hard not to admit there was a problem.  So she came and we chatted a bit, and all the while I was feeling worse and worse.  I finally asked her to leave.  I couldn’t figure out what it was.  I was in denial.

Then it hit.  The GI symptoms were as strong as ever.  It didn’t make sense – this was supposed to be over!  I sucked on the Pepto tablets and rocked back and forth on the couch, running often to the toilet, hoping it would be over soon.  After what felt like several hours I looked at the clock – it had been 30 minutes.

Eventually the symptoms lessened enough that I was able to pass out on the couch.  A while later I woke up and stumbled to my bed.  Thank goodness.

And this morning I got the most wonderful treat: two of the other regulars in the chats had emailed me, each asking if I was ok!  I had told one of them I’d definitely be there last night, and I’m usually there every week, so they were concerned.  How sweet!

The amazing thing is how much we know about each other without actually knowing each other.  I’m still a bit paranoid about anyone finding out who I am, so no one knows my name, even my first name.  No one knows anything that could identify me.  And to be honest, I don’t know much about them either.  I know one’s occupation.  I know one’s first name.  I know about their pets and families… but I don’t know who they are.  Just like they don’t know who I am.  This is a new experience, having a support network of people I don’t know.  It feels odd, but I like it.  I like that we care about each other and that we understand each other.  I like that we do not place any demands on each other, but we are still there to support each other.

And I love that I found two caring messages in my inbox this morning, when no one else had even known I was especially ill.  It makes a big difference.

Leave a Comment » | Expectations, Isolation, Kindness, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Salt in the wound: losing health insurance

July 12, 2012

Apparently the universe saw my post from yesterday and said “Screw you!  We’ll make sure you’re not ‘bored’!”

Today was bad.

This morning I decided to call HR at my old employer again.  I started calling about a month ago to find out what my health insurance status was now that my long term disability claim has been denied.  The person with all the answers was out of the office indefinitely. The other, let’s call her Joan, wasn’t calling me back.  I figured I should try again today.  I looked at the clock: 8:56am.  Too early.  I read the news.  I read email.  I read random web sites.  I ate breakfast and took my pills.  I did more reading.  Nice morning, right?  As I was about to start my physical therapy, I realized I could finally call HR.  I couldn’t get Joan on the phone but I got someone else, let’s call her Ruth.  Ruth checked with Joan and came back to the phone, asking me, “Have you received a COBRA packet in the mail?”  And from there my day went to shit.

For those not from the U.S., let me explain.  While every other industrialized country provides universal health insurance to their citizens, the U.S. does not.  There is currently a new law that will expand coverage, but it does not cover everyone, and we must still pay for health insurance ourselves.  No, I’m not kidding.  It just make sure we won’t be turned down by the insurance companies.  And then there’s an election coming up and one of the presidential nominees wants to repeal that law, which will only make things worse.  But I could write an entire book on my thoughts about that.  So moving on….  Most of us get health insurance through employers.  Getting it ourselves, without an employer, is very expensive.  When I left my job last fall I got to keep my health insurance.  However, when my long term disability claim was denied, I lost my health insurance.  By law, I am entitled to COBRA.  This allows me to keep my health insurance for up to 18 months (possibly 29 months if I can prove disability) and all I have to do is pay exorbitantly high rates.

Obviously this is bad.  I’m ill so I have to stop working, my long term disability claim is denied, so now I have no income and no health insurance.  This is very very bad.  I start wondering how much COBRA will cost me.  $500?  $600?  And when does it begin?  Does it begin today?  When my LTD was denied a month ago?  When STD ended back in April?  I could owe $2000 in back payments!  Very very bad.

Ruth in HR didn’t know anything, and I can’t blame her – it wasn’t her job.  She promised that Joan would call me back, and asked would I be able to talk this afternoon?  That’s when I lost it.  I do not like to cry in front of other people.  I just don’t.  And I lost it.  I started sobbing about how I was freaking out and I just needed to know.  I’d been trying to reach Joan for weeks and she could call me any time, she could call me at midnight, I just needed to talk to her!  And through the sobs, I could tell that Ruth felt awful about it.

Later I ran into a neighbor I’m friendly with while I was doing laundry in the communal laundry room (with the phone by my side) and when he asked how I was doing, I started crying again.  How embarrassing!  I had good reason, but it was still embarrassing.

I spent the next 5 hours bringing the phone with me everyplace.  I got all the way to the bathroom in my apartment, then trudged back to the living room to get my phone and bring it with me so it would be nearby while I peed.  I took it to the microwave to heat up food.  I had it next to me while I researched my Medicaid (state health insurance for the poor and disabled) options.  I had it on my lap while I briefly thought about going back to work.  (Then I pictured what I’d have to do, and realized I wouldn’t last through the first week.)  I had it with me on the bed while I lay there and cried.  I skipped my shower, just in case.  I wanted to get that call.  Of course, she didn’t call.

As the end of the workday approached, I tried calling Joan and she didn’t answer.  So I called Ruth instead and asked to speak to the head of the department.  Ah ha!  Joan came on the line, apologizing profusely.

At this point I should interrupt myself and say that I don’t blame Joan.  She was covering for the person who normally handles this and the department was understaffed even before that person had to take a leave.  I worked with Joan when I had to set up STD and she was very nice, though hard to reach then too.  This is not her fault.  In fact, she has been sympathetic and kind through the entire thing.

So Joan came on the line and started by simply confirming that my LTD was denied and that I was appealing it.  And here’s where the story finally took an upswing.  But to understand it fully, I should mention that I have a big mouth.  It runs in the family.  My mother’s side are all talkers.  We kid each other about it, and my father’s side jokes about it too, finding us all amusing.  I’m perfectly happy to spend an hour or more on the phone with a friend and not even notice the time flying by.  I can be overly chatty, and sometimes it gets me into trouble.  Often I don’t know when to shut up.  But this time, it saved me.

Joan asked if the LTD company had given me a timeframe for reviewing the appeal.  A normal person would have said, “I haven’t filed the appeal yet, so no.”  Not me.  Oh boy.  No, me and my big mouth started in on, “Well, no, but even if they had I wouldn’t believe it, after they delayed my claim by several weeks and lost part of my file.”  She was horrified and angry and wanted the story, so I told her the whole thing.  And that’s when she told me something crucial that I wish I’d known earlier (but I guess it did make perfect sense once I thought about it): the insurance company has to answer to them!  My employer pays this company and expects their employees to be treated fairly.  And lucky for me, Joan is the person they report to.

To compensate me for my horrible treatment, she would immediately extend my health insurance for two more months as of today.

TWO MONTHS!  I could have fallen over!  I was shocked, relieved, happy, amazed.  This doesn’t fix everything, but it gives me some time, some breathing room.  Medicaid applications are processed in about a month, so I can apply several weeks from now and with any luck, if they approve it, I’ll have Medicaid when my employer-provided health insurance is cancelled.  Whew!

Oh, and as a bonus, she’s going to call the supervisor of my contact at the LTD company and discuss this whole thing.  I planned to address it later, after my claim was settled, but she’s doing it now.  Great!

I did a lot of crying today, which is unusual for me.  At times I felt alone and helpless.  I was angry, confused, and angry again.  Then somehow, unexpectedly, I got a small boost.  It won’t last long, but I’m grateful for it.  I’ll still lose my health insurance, but at least this time I’ll see it coming.

Now I just have to hope my lawyer can file that appeal quickly!

2 Comments | Expectations, Frustration, Healthcare, Kindness, Politics, Rants, Support, Unpredictable | Permalink
Posted by chronicrants

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?

Leave a Comment » | Expectations, Kindness, Limitations, Raves, Support, Thoughtfulness | 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

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