Fearing disbelief

March 5, 2012

When I was in 7th grade, one day I suddenly had a lot of pain in my wrist.  My parents brought me to a doctor, who told me to wear a splint for 6 weeks and it would be all better.  Boy was he wrong!  This was to be the first of many symptoms.

Fast-forward to the tender age of 17.  I had seen many doctors – internists, orthopedists, surgeons (yet for some reason, no one suggested neurologists or rheumatologists) – and they didn’t know how to treat me.  They suggested I see a different kind of doctor: a psychologist.

I have nothing against psychologists.  In fact, I have a big problem with the social stigma surrounding mental health in the United States.  But in this case, it was upsetting that the doctors all thought this was in my head.  Then some family and friends started to think so too, and that was even worse!  Some thought that I was making up the pain in order to get attention.  Others thought that my subconscious was making up the pain.  It got to the point that even I started to wonder!  My mother was the one person who never believed their hype – she always knew that the pain was real.  I am so thankful for her.  I can’t imagine what would have happened to me if she hadn’t been in my corner.

My disability benefits were due to run out last week, and try as I might, I can’t get the overworked case manager to call me and tell me if I’m approved for a few more weeks.  I was worrying about this today when I suddenly realized why I’m so nervous: I’ve had years of people not believing me, and what if the insurance company stops believing too?  Those doubters when I was 17 were only some of the doubters I’ve faced.  There have been so many.  I still face the problem now, but I have a better handle on dealing with it.  With an insurance company, though, it can be very hard to argue. There’s no real person to convince, just an entity.

Now that I’ve recognized the fear I feel, the lasting affect of those years of being doubted, I hope that I can overcome it.  I hope that I can feel confident that people will believe me (or at least that I’ll convince them easily enough.)  It will take a lot of work; afterall, I’ve been facing the disbelief for many, many years.  Still, now that I recognize it, it’s time to get over it.

I refuse to waste any more energy on worrying about what other people think.

~~~~~~~~~~

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Painful painkiller politics: the double standards of addiction

February 23, 2012

This week’s Chronic Babe carnival is about how prescription painkillers are handled in this country.  The article The War Over Prescription Painkillers got a huge response; many people feel strongly about this issue.  I am one of them.

The pain started when I was 12.  It was sporadic and manageable.  It changed when I was 16.  It became constant and severe.  On a good day, the pain was at a 6 or 7 on the now-familiar pain scale.  If only there had been more good days.  The pain was 24/7.  I learned to eat through it, sleep through it, go to school through it, be a teenager through it.  I did not learn how to properly manage it.  No doctors sent me to a pain clinic.  There was some vague talk about painkillers, but I was scared, and no one properly explained them.  No one offered coping mechanisms.  That was back in the 1990s.  I would have expected things to have improved by now.  I wish I’d been right.

I wrote before about my feelings about medical marijuana.  I think people (meaning politicians) need to get over the stigma of it, and accept that if it can help people while imparting relatively few side effects, then it should be prescribed like any other substance that helps people.  It all comes down to the stigma.  And that’s what’s happening with the current state of painkiller prescriptions.  There’s a stigma, and that’s stopping people from getting the medications they need.

The question is simple, really: is it worth risking the well-being of the many people who could become addicted to painkillers if it means helping those who are in pain?  Well, let’s examine a few similar situations.

  1. Plenty of people like to gamble.  I’m one of them.  From time to time, I’ll buy a lottery ticket.  Sure, I know I’m probably throwing my money away, but it’s fun to dream about what I’d do with the winnings.  Some people get addicted to gambling.  This can harm those who are addicted as well as their loved ones and society in general.  Far from making it illegal, more states are making it legal now, including my own state of Massachusetts.  And it doesn’t help people with serious illnesses.
  2. Many people like to drink.  Some people go out for a drink or two, then safely go home.  Some people are addicted to alcohol.  Many people are killed by drunk drivers.  The people who drink are harmed, and so are their loved ones, strangers, and society.  Is alcohol illegal?  Well, Prohibition really didn’t work out too well in this country, and even that wasn’t a full-out ban.  These days, drinking is embraced.  Social events often involve alcohol.  Religious events often involve alcohol.  Work events often involve alcohol.  And it doesn’t help people with serious illnesses.
  3. A lot of people like to smoke.  Some smoke a lot, some smoke rarely.  Some people are addicted to cigarettes.  Smoking can kill the smokers and also the people who are exposed to their smoke.  Smoking can even detract from some workers’ productivity (add up all those cigarette breaks, and the smokers at my office spend a lot more time away from their desks than I do.)  And so now smoking is illegal.  Oh, wait, it’s not?  Really?  Hmm….  And it doesn’t help people with serious illnesses.

I could easily go on.  The point is, we do not ban items or practices because they may be abused by a minority.  if the item or activity is deemed safe overall, we allow it.  [Note: Cigarettes don’t fit this category – if they were a new invention, free of lobbying, I doubt they’d get past the FDA, but that’s just my own guess.]  So why are prescription painkillers so stigmatized?  Why are they less socially acceptable than gambling, drinking, and smoking?  I think it’s precisely because gambling, drinking, and smoking are for everyone (who  is of a certain age) whereas prescription painkillers are only for “sick people.”  The majority want to believe they will never be in need of these medications, so it is easy enough to say that their primary purpose is for use by addicts and sellers.  These people don’t want to see the real need; it’s easier to turn away from it.  But that doesn’t change it.  The need is real, and it’s here.  There are a lot of potentially dangerous substances in this world and we can’t remove them all.  Let’s not allow fear to take away something that is so beneficial to so many.

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How honest are your doctors?

February 23, 2012

Has your doctor ever lied to you?  Actually, let’s change that: have you ever caught your doctor lying to you?

I remember the first big lie I found: I was reading my medical record, and I discovered that a surgery had found something that my doctor hadn’t mentioned to me or to my parents (I was a minor then.)  I had left that doctor a few years earlier and I immediately picked up the phone and reached him at his office.  He said that I was remembering wrong, that he had told us everything, and he hung up.  I never did like him.

Then there was a different, stranger lie.  After years of digestive problems, I asked my doctor to test me for lactose intolerance.  He said there was no test for it.  Huh?  Of course there was a test!  He didn’t say that he didn’t like the test, or he didn’t believe it was accurate… he said no test existed!  Why would he lie about something like that?

I’ve been thinking about these things since this article appeared in the paper a couple weeks ago.  Some of the things doctors lie about are ties to drug companies and such.  That bothers me; if I asked a doctor outright about a connection to a pharmaceutical company, I expect to get a truthful answer.

But what I think is one of the most disturbing parts of this article is this line:

“…nearly 90 percent of doctors reported that patients should be fully informed about the benefits and risks of a procedure or drug.”

This is horrifying!  Only 90%!  But then, look at the part before that line:

“Barry added that he was “gratified” to see that nearly 90 percent of doctors reported that patients should be fully informed about the benefits and risks of a procedure or drug.”

Someone thinks that 90% is good!  In some cases 90% is great – like getting 90% right on a high school math test, or cleaning 90% of your house on a Saturday afternoon.  But when it comes to informing patients about drugs and procedures, nothing less than 100% should be acceptable!  And note that they aren’t saying 90% informed their patients.  That would be bad enough.  No, they reported that 90% think that “…patients should be fully informed…” [Note: that’s my bolding]  Are you kidding?!?  There are 10% of doctors who don’t think patients should know all of the potential benefits and risks they are taking on with a particular drug or procedure?  Do they really think they should be making these decisions for their patients?  It is their job to suggest and advise, not to make the ultimate decisions!

We all have our own ways of choosing our medical team.  Personally, I go with gut feelings a lot, and trust is a big part of that.  If I don’t think I can trust someone, they’re out.  My health is simply too important to rely on someone I don’t trust for medical advice.  I feel good about most of my doctors.  I feel comfortable with them, and I do believe that they are being forthright and honest with me.  Nothing builds my trust as much as when one of them says that they just don’t know what the answer is, but they will give me all of the information and help me figure things out.  I would much rather hear “I don’t know” than hear a lie.

We must demand 100% honesty from our doctors.  We deserve it.  And they need to know it.

 

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Gluten-free day 1: The merry-go-round

February 20, 2012

Drugs, physical therapy, hypnosis, more drugs, diet, tai chi, acupuncture, meditation, psychotherapy, herbal medicine, yet more drugs…. I’ve tried a lot of different “treatments” over the years, and so far some have helped a bit, but none has eliminated any of my symptoms.  At best, a couple have lessened the pain, but that’s about it.

Now I’m looking at what could be the holy grail of treatments: a gluten-free diet.  According to books, web sites, doctors, and the nutritionist I met with last week, this could be the key.  Of course, the logical, weary, tired part of me knows that this could be just one more false lead.  Still, I’d like to hold out a little hope.

If the books and experts and such are right, then gluten can triggers an autoimmune response in the body, and eliminating gluten and relieve that response and therefore the symptoms.  In six months I could have less pain, less fatigue, less nausea…. it’s almost too much to hope for!

I’m realistic.  I don’t expected to be “cured” or anything close to it.  But if I could get a little energy back, that would be the best thing I could imagine right now.  So I figure it’s worth a shot.  Even if this doesn’t work, it probably won’t hurt me.  I just had two days of worse-than-usual nausea from adjusting a medication dose.  Sure, going gluten-free is inconvenient, but if it works, I’ll gladly do it for the rest of my life.

So today was day 1 of being gluten-free.  It was what could literally be the first day of the rest of my new life.  I sure hope it is.

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

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