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?


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.


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:

HELP!!!!!!!!!!!!!

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.***


6 consecutive days of physical therapy!

June 3, 2012

I’ll admit there were times I just “didn’t feel like” doing my exercises.  And yes, there were days when I legitimately felt like shit.  And sure, there were days when I felt lousy and probably could have pushed myself to do PT, but moving really was tough.  Of course, there were also the days that I “meant” to do it, but somehow never got around to it.

And then there’s today.

When I started going to physical therapy a few months ago, I decided to make more of an effort this time around.  I printed out a calendar from the web, and I bought stickers.  Just like when I was a kid, I got a sticker every time I did something.  In this case the reward isn’t some toy, it’s my health.  It’s easy to forget that, of course, because the reward isn’t immediate, but the truth is, I’m starting to feel the PT working.

I’ve been pretty good about doing the exercises at home on the days I feel well.  Sure, I’ve skipped a day here or there, but doesn’t everyone?  But yesterday I looked at the calendar week by week, and noticed that I mostly do the exercises 2 or 3 times a week, sometimes 4, and that just isn’t good enough!  I also noticed that I was already doing really well, so that pushed me to keep going.

And then there was today.

Today is the kind of day when I would normally have skipped PT.  I left the house a bit earlier than usual.  I had a busy afternoon.  I was busy and productive at home.  I forgot about the exercises.  Then I was having dinner and I had to digest.  But I pushed through, and at 9pm, I did it!  I broke my own record and did PT exercises for the 6th day in a row!

Now the pressure’s on.

I’m writing this in a public place so that maybe I’ll feel even more motivation to keep going.  I’ll give myself days off when I legitimately don’t feel up to PT, but otherwise, I’m pushing through.  Wouldn’t it be amazing if I could do PT tomorrow and complete and entire week?!

So not only is my posture getting better and my muscles getting stronger, but I’m feeling damn proud of myself, too.  Woo hoo!