Missing my own anniversary

July 23, 2012

When I started this blog last July, I wrote every single day for months.  If  I missed a day, I wrote two posts the next day.  I averaged one post each day for a long time, always making it a priority.  And then the fatigue got worse.  The downslide started by missing a day here and there without making it up, and it quickly snowballed to missing several days at a time.  At some point this began to feel acceptable, and then even normal.

Earlier this week I felt absolutely lousy and wasn’t able to leave the house for two days.  My arms were weak, and trying to type or hold
the tv remote or hold a book took a huge effort.  I made the mistake of trying to shower once…. what was I thinking?  And in the midst of that, this blog’s anniversary just passed me by.  I had long since given myself permission to ignore the blog on the days I felt bad or had nothing of special interest to write, and the big day came and went, the huge print in my calendar completely unnoticed.

Most of you know how it is.  We miss friends’ weddings and birthdays.  We lose jobs and we lose significant others.  We miss out on life.  But somehow, a new day comes around, with a new chance to maybe do something fun or interesting or important.  So with that in mind, I’ll try not to dwell on the missed opportunities, of which there can be so many, and try instead to focus on the good moments and the joy they bring.

But don’t worry, I’ll resume my regular ranting soon enough!

This week’s big chronic illness to do list

July 18, 2012

Well that was an unexpectedly long blogging break.  You’d think that after the big health insurance scare things would have gotten easier, but instead more shit piled on.  I won’t go into details now.  Instead, here’s my current checklist of health-related things I need to work on this week.  Of course there’s regular stuff too, like paying bills, doing laundry, and visiting an ill relative.  This is just the health stuff.  People think it’s all about taking pills.  If only.

  • Get infectious disease testing done.  To get testing, see a specialist.  To see a specialist covered by insurance, get a referral from PCP (primary care physician.)  To get a referral, have all recent specialist records sent to PCP.  To save time, since I am about to lose my health insurance, bring records to PCP myself.
  • Read stack of materials received at latest naturopath appointment.
  • Get food/mold/toxin/etc. testing done.  In order to get this covered by insurance, get a doctor to order the test.  Naturopaths aren’t licensed in Massachusetts, so find another doctor to do this.  Waiting to hear back from one specialist.  If she can’t or won’t, ask another specialist.  If he can’t or won’t try, the PCP.  If she can’t or won’t, get PCP to give referral to another doctor.  If she won’t, then consider spending $1100 to get test done without a doctor’s order.  If I do get a doctor’s order, call the testing company to figure out how to get the blood drawn at a lab that the insurance will cover, even though none of them seem to do it.  If this can not be done, consider spending $1100 to get the test done.
  • Call my state senator about getting the bill to license naturopaths out of committee and ready for a vote in the state legislature.
  • As part of the LTD appeal, talk to a former coworker about having her write a letter describing the poor condition I was in while I was still working.  I need them to understand that I was working, but even then I was not functioning well.
  • Find out what happens to my health insurance if I have COBRA and I win my LTD appeal.
  • Find out what happens to my health insurance if I have MassHealth and I win my LTD appeal.
  • Apply for SSDI.  More realistically, begin figuring out what is necessary to apply for SSDI and take first steps.
  • Prepare to apply for MassHealth (Massachusetts’ version of Medicaid).
  • Talk to “Joan” about what happened with the LTD company (see the big health insurance scare for details.)  She was supposed to call me back and hasn’t yet.
  • Get new orthodics fixed.
  • Find one of the few pharmacies that sells the specific supplement I need and then drive over to get it.
  • Take new medications.
  • Keep track of dates new meds are started and any effects, whether good or bad, over the coming hours and days and weeks.
  • Continue taking all other meds.  Be careful about timing to make sure there are no conflicts.  Take first med upon waking, then exactly one hour later eat breakfast, and immediately after breakfast take the rest of the morning meds, etc. etc.
  • Do physical therapy daily.
  • Take a walk for exercise daily.
  • Follow special diet carefully.  Go food shopping more often.  Plan meals well in advance.  Never eat out.
  • Track how I feel every day and how it relates to food, activity, stress, etc.
  • Be careful to go to sleep at the same time every night.  Wake up at the same time every day.
  • Avoid stress.  Or at least try to minimize stress and to handle it well.
  • Try to have a life outside of my illness.

And that, my friends, is why having a chronic illness is like a full time job, but with a lot more stress and no income.

What’s on your list?  Share your to do’s and spread the word.  Let’s show why it isn’t just sitting home and watching tv all day.

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!

Boring upheaval

July 11, 2012

I haven’t been posting much in the last few weeks because I don’t have anything to say.  Well, that’s not true; I have a lot to say, actually.  I have lists of topics.  I have posts that I started but haven’t finished.  So I guess the more accurate way to put it is, there’s been nothing much that I’ve wanted to say.

Life feels like a boring upheaval.  Every day is difficult and every day is boring.  Every day is stagnant and every day is a challenge.  To some of you that will make no sense, and to others it’ll be spot on.

It used to be that I left town at least every month or two.  Even if I didn’t go far, I went someplace.  I got on an airplane at least three times a year.  Now, my last flight was a year and a half ago.  The last time I left town was in April, and that was only for a couple of days. The last time before that was in 2011.  It’s been too long.

Weekdays are slow because friends are at work.  Weekends are slow because I don’t feel up to doing anything outdoors on hot days.  Nights are slow because I can’t make plans since I never know how I’ll feel from one day to the next.

I have so much to say, but somehow, none of it seems relevant at the moment.  I’m sure that will change.  At some point you’ll just want to shut me up.  But for now I’m keeping somewhat quiet.

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