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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Where’s the fairness? Life and chronic illness

February 29, 2012

Life’s not fair.  We hear that all the time as children.  I think it usually goes something like:

Kid (whining): I want X!

Parent: I’m sorry, you can’t have it.

Kid (still whining): But that’s not fair!

Parent: Life isn’t fair.  Get used to it.

Sound familiar?  I don’t know when I stopped thinking about fairness in that way, but it must have been a long time ago.  I don’t really believe in karma.  I do believe that if you do good things, then good things will happen to you, but that’s because I think that if you help out the people in your life, then they will help you out in return.  It’s not because I think there’s a cosmic balance in the world.  I know many people disagree, but that’s my thinking.  So I know that fair isn’t relevant.

Maybe that’s why I was so caught off-guard today when I was emailing with a friend about how on earth I can plan a date when my pain levels are jumping all over the place, and she wrote back: Sorry to hear you’re hurting so much, it’s just not fair.

And here’s my response to her, verbatim: Nope, it’s definitely not fair.  If it was fair, this would hit murderers and rapists, and it would leave me alone.  I just want to get a nice job working at a little nonprofit, date, and go out with friends.  Nope, no fairness.  But then, that’s no surprise.

Yeah, I know I sound a bit bitter, but can you blame me?  I’m sure we all have those moments.  Because no matter who we are or how we act, we could get a bad illness.  Because there are horrible people in the world who are completely healthy, and wonderful people who are very sick.  Because there are horrible people with billions of dollars, and fantastic people who are starving to death.  Because life isn’t fair.

Most days, I know that means that I just have to make the best of it.  Some days, I wallow in the unfairness of it all.  Lately I’ve been picturing what my life would be like if I suddenly got better, and it’s a lovely life.  I would get a job at a nonprofit, helping people.  I would do volunteer work.  I would go out more and do more fun things.  I would exercise and take good care of my body.  I would work to raise awareness of chronic illness and what it means.  I would not be so scared to start a family.  And then I wake up and remember that that’s not my life.  Maybe it will be one day, but that’s unlikely.  So I’m back to making the best of it.  It’s not always easy, but it’s all I’ve got.

And tomorrow I’ll ignore all of the many things in life that are unfair, and just accept reality again.  For a while, at least.


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Pain: I’d rather be asleep

February 28, 2012

You know things are bad when the first thought you have when you wake up in pain in the middle of the night is, “Crap, now I’m going to be exhausted tomorrow.”

I guess a “healthy” person, someone who doesn’t have chronic pain, would have called 911.  But I’ve had enough pain over the years to just sigh, try to fall asleep, then give in and read a book.  I learned how to sleep through the pain when I was a teenager.  People have been amazed by that, but it’s a survival instinct.  Yes, when the pain is worse, I don’t sleep as well, but I can often sleep through the  lesser pain.  And miraculously, my pain hasn’t been too bad at night, so it hasn’t kept me awake.  That’s what made last night even more strange.

When I woke up, I first thought of the dreams I’d been having, so maybe those are what really woke me up.  But then I noticed the pain – everywhere.  Ok, it wasn’t everywhere, but it was in a lot more places than usual!  I did a quick assessment: “toes (not again!), knees (they never hurt when I’m lying down, except for weather-related pain – is it going to snow?), fingers (oh crap, that’s getting worse, and that just started a few weeks ago), shoulder (yow!  that’s a bad one, and completely new), elbows (uh oh, those never hurt before), and everything else…. seems ok so far.  Ok, some new pain, some old pain, and nothing I can do about either right now.  Better get back to sleep.”

After that highly technical assessment, I tried to ignore it all, but the pain was intense.  Around 4:30am I gave up and read a book for a while.  Luckily, later in the day I was able to fall asleep on the couch, and I took a 4 hour nap.  None of this is normal.  I never wake up for the day at 4:30am.  And I never take a 4 hour nap.  But the “healthy” person would have been worse off – I’m pretty sure they would have spent many hours in a hospital and learned nothing.

People are often amazed at the way I handle these things.  They say I’m so strong, and they admire that.  My response is, if you’d been dealing with chronic pain for 20 years, since your childhood, you’d probably react the same way.  What choice do I have?  Panicking won’t help one bit.  I’d rather roll over and go back to sleep.

 

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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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