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?

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