About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Tuesday, May 1, 2012

Medicine Is an Art, Not a Code Number...

I just need a few tulips in my life today...

I've had a more than a few cruddy days now and am, quite frankly, just trying to hold it together.  I had another appointment with my long-suffering GP the other day and that's always extremely taxing.  I'm not going to give you all the complaints about the stuff going on around me and in me, but did want to write a post, so I'll try to be inspiring even though I'm not feeling too awfully inspired today.  Sorry if I'm not up to par.  Hope you understand. But I think what I have to say is good to keep in mind, even if it is obvious to many.  It's always nice, I find, to have someone confirm what I suspect or think.  Validation is so sweet, no?

Today I'm going to dispense some advice about any doctors whom you might see, especially those that are consultants.  These are the doctors whom you may see once or only once in a while.  They are the specialists in their given fields and all too often we are apt to take everything they say as gospel, especially since we have done a lot of research into finding that doctor, have often traveled long distances to see that doctor, have invested quite a few bucks into the venture, not to mention a lot of "health credits."   And let's face it, we're tired and exhausted and in pain and no matter how much we tell ourselves we will NOT get up any hopes about finding the magic bullet during this appointment, realistically, we do get our hopes up, no matter what.

I've been to more specialists than I can ever remember, from large medical centers to small places.  Some have been great, others have been much worse than any charlatan I might have found if I'd looked for one deliberately. Some were ignorant, some were brilliant.  Some were idiots, others were geniuses.   

However, no matter what category of doctor you may be seeing, one piece of advice I would like to put out there is about medications your doctors prescribe for you.  Everything you ever take should be reviewed, but especially medications the specialists give you.  Oftentimes they are not aware of every aspect of your history, be it because you did not mention what seems to be an unimportant minor tidbit or because they didn't factor something into the equation, and so you need to know everything about the drug before taking it.  

Before I go any further, I want to say that "poop happens."  (I'm trying to keep it clean here, people!)  My daughter was prescribed a medication for which she was even given a trial test before they put her on said medication to make sure she was safe with it.  She took a very low dose of the medication and after only two doses she developed pancreatitis and almost died, all within two days.  We aren't about to blame any of her doctors.  In this case, everyone was on top of everything and she happened to be the one in a million that this could happen to. Actually, no one had seen anything like this before, certainly not at her dosage and for the small amount of time she'd been on it.

On the other hand, there are the times where you see a doctor and he is either just not on the ball or somehow no one is on the same page, but you simply don't realize it.  

One sleep specialist put me on a medication that sounded so good in theory.  But two months later I realized that I was experiencing yet another kind of headache in the midst of all the headaches I have going on all the time.  Two months!  How stupid am I?  When I mentioned it to hubby - not even realizing I was complaining, just my mouth talking! - he looked up the contraindications for the medication and MIGRAINE sufferers were not supposed to ever go on this medication.  So from now on, I check on every medication. Migraines are a huge part of my history...I've even had those lumbar punctures, remember?

Medicine is not a science, it's an art.  An awful lot of doctors whom I respect an awful lot have said this over and over to me.  The best doctors, I am sure, feel things instinctively.  And don't laugh at that.  If you're a mom, you know that there have been times when you just knew instinctively that something was wrong or up.  If you're anyone at all, you know that there have been times when the hairs on the back of your head have stood up.  That's instinct.

There is a reason you are a "patient."  You need to be patient, to practice "patience," not to be too obvious here.  But there is also a reason that it is the "practice" of medicine and that a physician has a "practice."  

Hopefully, my next installment will be a bit more inspired! 

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