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.

4 Comments | Educating, Expectations, Frustration, Healthcare, Milestones, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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?

Leave a Comment » | Decisions, Expectations, Frustration, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

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!

2 Comments | Expectations, Frustration, Limitations, Milestones, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

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.

4 Comments | Educating, Expectations, Healthcare, Limitations, Medication, Rants | Permalink
Posted by chronicrants

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