Coin toss: the life of a CI gal

July 30, 2012

Decisions I was glad to make today:

  • Peaches or nectarines?
  • Wash dishes now or later?
  • Start reading the crime thriller or the mystery novel?
  • Answer emails or catch up on a forum?
  • Post that on Facebook under my real name or on Twitter under my anonymous name?  (Follow me at @CIRants if you’re interested.)
  • Watch more tv or surf the web?
  • Try to organize some friends to get together soon or wait until the weather cools off in the fall?

Decisions I wish I didn’t have to make today:

  • Leave the house to enjoy the great weather or stay in and keep off my painful feet?
  • Get the very expensive blood test that could help me a lot or hold off and keeping trying to find a way to get insurance to cover it?
  • See the doctor who most likely will not help me in the slightest or cancel the appointment and assume I was right to do so?
  • Write a letter about my life of chronic illness as part of my appeal of the LTD company’s denial or do whatever I can to put off facing my past?
  • Plan to pay for COBRA for my health insurance until the LTD decision is reversed (and they reimburse me) or start applying for Medicaid?  But what if the LTD appeal fails?
  • Endure the pain and maybe make it worse by going out to buy groceries tonight or take a chance that I’ll improve in time to buy groceries without the extra pain in a couple of days (hopefully before I run out of fruits and vegetables)?
  • Apply now for Section 8 housing or wait for the LTD appeal decision?  Or wait for SSDI?

Having to choose: Paperwork vs. Health

July 29, 2012

I’m feeling overwhelmed and stressed out and I don’t even have a job.  Ok wait, let me rephrase that: I don’t have a paying job.  In reality, I feel like I have two full-time jobs right now: to improve my health and to manage health insurance crap.

I left my job in October thinking that I’d rest, feel better, and go right back to work.  Obviously that didn’t happen.  But during that time I was on short term disability (STD) so I had money (though only 70% of my salary) coming in and I could just focus on my health.  Unfortunately, I was halfway through the 6-month limit before I got onto what I believe is the right track for improving my health.  It took months of research, reading all sorts of books and web sites, and calling to interview doctors, naturopaths, and others.  Finally, a bit after STD ended, I had a course of action.

Unfortunately, the long term disability (LTD) portion was not so smooth, so I’ve dealing with that shit just as I’ve been starting new treatments with a new practitioner.  If you’ve been reading my blog, you already knew about all of this.  If you’ve had to go on LTD or SSDI, then you’re intimately familiar with this kind of situation.  This is nothing new to many of you.  But here’s the thing, the injustice of it all, the absurdity, just keeps coming back at me, and I can’t let it go.

How is it that when people are at their lowest, the system is designed to push them down even further?  Why is it that no one seems to care?  

Sure, the people most affected are usually unable to stand up for themselves.  I get that.  But what about friends and family?  Surely the politicians and business people responsible for this mess of bureaucracy must have friends and family who’ve been caught up in this system.  Don’t they see what a mess it is?  Haven’t they ever watched a loved one suffer?

It is just not ok that I am having to focus less on getting better so that I can instead try to complete forms, talk to lawyers, argue with health insurance, and all the rest of that idiocy.  Wouldn’t everyone involved benefit if instead I focused on improving my health so that I could one day go back to work and then I wouldn’t need Medicaid or SSDI or any of the rest of it?  Or if I never get better, will all the forms really have turned out to be so necessary?

I want to fix this system.  I can’t possibly do it now, and I know that’s just the way it is.  But some day, if I ever get well enough, something has to be done.  I’m very willing to take on the system.  Any suggestions on where I’d begin?

What’s normal?

July 25, 2012

For a long time I didn’t realize that it wasn’t normal to go for a day or more without pooping.  After all, that’s just not something that people talk about.

It’s like when I started getting my period, and I didn’t realize that it wasn’t normal to be soaking through a heavy pad every hour or two.  I just thought the other girls were somehow better at running to the bathroom in between every single class.

Then there were the years when I didn’t realize it wasn’t normal to be getting diarrhea at least once a week.  Well, I guess I knew it wasn’t normal, but I didn’t know it was a problem.

And of course I knew the pain wasn’t normal, but I believed the doctors when they said it would be normal for me from now on.

I definitely knew the fatigue wasn’t normal, but it became such a part of my life that I forgot how abnormal the minor fatigue was, because it still felt better than the more moderate or severe fatigue.

For far too long I thought it was normal to listen to doctors and blindly take their advice.  I was right: it’s normal.  But it shouldn’t be.

I assumed it was normal to not see faces in dreams.  Or to be unable to picture my best friend’s face.  Or to describe my mother.  Or to not recognize well-known acquaintances a week after last seeing them.

It was too easy to think that my discomfort in standing still for more than a few minutes was normal.

I can’t believe it, but I used to think it was normal, or at least not abnormal, to be literally unable to get out of bed for a long time in the morning, to be falling asleep all afternoon, then to become wide awake every night around bedtime.

Like so many, I thought it was normal to put up with horrible from side effects from drugs, even if we couldn’t be sure the drugs were helping.

I knew it was wrong of people, but I thought it was normal to be disbelieved.  Too bad I was right about that one too.

Ditto for being underestimated.

Being told by doctors that there was nothing to be done and I should just lived with it came to feel normal.

Staying home while my friends went out became normal.

Lying to people and pretending to feel better than I really felt seemed normal.  This should never be normal.

After a while, forgetting events in my life, having trouble keeping a train of thought, and having trouble with things I used to find simple, like basic arithmetic, started to seem normal.

Worrying about money and health insurance and red tape and bureaucracy became absurdly, obscenely normal.

Sadly, seeing my family and friends constantly worry about me, for me, seems almost normal.

I can hardly admit it even to myself, but accepting my illness and giving up on the fight, being willing to watch it all get worse and believing there was nothing to be done, seemed normal.

Whatever else this all is, no matter how you define the word, it is not normal!

There is no normal.  Question everything.

Accept this and you’ll be ahead of the game.

Choosing the path of most (insurance) resistance

July 24, 2012

The results of my cognitive tests could definitely have been worse, but they weren’t normal, either.  I’m sure I’d be second-guessing my own judgment anyway, but that doesn’t help.

I have now had two visits with my new naturopath, and in that short time she’s already helped me quite a bit.  At the first visit she gave me an elimination diet to try.  This was a good, free way to figure out if I was having reactions to food.  I have had surprising improvement on this diet, so I know there are food issues.  (We’ve done other things too, but these days I’m focused on the food aspect.)

At the second appointment we discussed food testing.  The blood tests are expensive but they would be much faster and more definitive than continuing the elimination diet.  She encouraged me to continue the diet and hold off on testing if money would be an issue.  That made sense until I read through the many foods, additives, colorings, chemicals, molds, etc. that would be tested, and I immediately had my heart set on finding answers. Imagine, I could have answers!

That was a week and a half ago.  Since then I have called my health insurance company several times.  I have called all of my doctors and gone in to see one who I thought would order the test.  She did order it, but her practice wouldn’t request an “out of area authorization” from the insurance company.  Instead, they want me to try their standard test (which I don’t have faith in) and then maybe, if they feel like it, they might request the authorization.  If they request the authorization and the insurance company approves it, the cost to me for the test would be $15.  If not, the cost to me would be $1100. Big difference.

There are different ways I could pay for the test out of pocket and I’ve been considering them all.  I could win the lottery.  Sure.  Someone could click on the “Donate” button on this page and help out.  Maybe.  I could set up an indiegogo page.  Too public (but not entirely ruled out yet.)  I could ask the relative who’s paying for my lawyer.  I hate to ask for more.  He’d give it, but I hate to ask.

Now, if I had just gotten sick last year for the first time this would be easier.  I’d follow the doctor’s request and get the “standard” test done and hold off on the other.  But after all this time, my thinking is colored by years of improper testing and treatments, and lack of testing and treatments.  I simply can’t think objectively about this.

And to add insult to injury, so to speak, there’s a ticking clock hanging over my head: I will lose my health insurance in 6 weeks if I don’t sign up for COBRA.  I’m certain Medicaid won’t cover this test.  So in 6 weeks, my only option to get this test would be to pay out of pocket.

My emotions are high and my thinking is rattled.  I don’t want to make the same mistakes that I’ve made for so many years.  I don’t want to hold back on something that could give me answers.  For years I was told to ignore symptoms or to take an inferior test or to try a lesser treatment.  Thanks to that and so many other errors, I am sicker now than I ever had to be.  Following conventional medicine has gotten me to this point.

What if I’m at another turning point? What if I can avoid getting worse by doing this now?  Then again, what if I’m over-estimating the potential benefits of this test?  What if I’m throwing a lot of money away for no good reason.  Maybe I should ignore all the tests and just stick to the diet, even though that could take a year or two and might not catch everything.  Like I said, my emotions are high and my thinking is rattled.  And that means just one thing: get another opinion, one I trust, not from a doctor.

After getting advice from a lot of family and friends, I have decided to get the “standard” test done because it can’t hurt and it might help to appease the important players.  Insurance will cover it and the doctors will be happy.  Then I’ll try once more to get the test I really want covered by insurance.  And I can try for a less comprehensive version of the test, and hopefully only pay closer to $800 (did I just say ONLY?!?)  I’m anxious to do this test right away, but for $1100, it’s worth waiting a couple more weeks if that’s what it takes.

I trust the people I’ve spoken to, and I hope we’re all right.  I hope that waiting for this test is the right move.  I hope that when I do it, it’s useful and not a waste or a disappointment.  Most of all, I hope it leads to better health.

What do you think?

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!

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