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.

Saturday, December 28, 2013

Stomach Acid & Vitamin B-12 Deficiency

I've written before that I get three daily shots: my Human Growth Hormone (HGH), my pitocin & and my Vitamin B-12.  People have asked me how do I know that I indeed need B-12 and I've always thought that a remarkable question.  Doesn't everyone get their levels, such as Vitamin D, checked periodically by blood work at their GP's office?

Vitamin B-12 is essential.  This is especially important if you happen to have ME/CFS/CFIDS or fibromyalgia. The bad news is that if you get a B-12 deficiency, it can take up to two years for your body and your cells to make up that deficiency.  I found this out the hard way.  Oh, your blood work will show relatively soon that your body has enough B-12, but unfortunately, science tells us that the deficiency takes a long time to correct. That's one reason why, since 1997, when I first discovered this deficiency, I've been religious about getting my B-12 shot daily when at all possible.

Unfortunately, in the past year the B-12 shots have become less than daily.  I think I've actually gone a month here and there without a B-12 shot, if not longer, because of all the hospitalizations this past year. (Seven ER visits*, three hospitalizations, about 33 days out of 365 in the hospital, not a good thing!)  If anything, I should have been a fanatic about the B-12.

I just watched an episode of Dr. Oz.  In full disclosure I'm not a big fan of the show.  I call the show "Just Shoot Me Now and Get It Over With!" because I find it too gloom and doom.  Furthermore, in an ABC interview years ago, I heard him say he wouldn't operate on an heart patient who smokes. I'm not sure I care for such a judgmental doctor. I also find the show too simplistic. However, I've always loved his graphics. They are amazing.

An aside: I also viewed his colonoscopy experience on YouTube in order to prepare myself psychologically for my own procedure.  Imagine how surprised I was to learn a few new things which I do want to mention in a future post.  So I have softened my views about Oz lately and I see that he has softened his approach.  He's no longer as gloom and doom as before and much more "positive."  There IS a place for him on TV after all - as millions of Americans have shown us.  But back to the subject at hand.

Last week, I happened to turn the TV on as the show was ending and I heard him say something about "make sure you drink your beet juice to see if you have low acid in your stomach!"  I hit "record" and thanked the DVR goddess.

Bingo!  I loved the beet test in the past to assess gastrointestinal motility (how do you like that phrasing?). But it has another use.  It can tell you whether or not you may have Vitamin B-12 deficiency.  If your urine turns pink after consuming a beet or beet juice, it may mean that your stomach acid is low but if it remains yellow, it means your stomach acid level is good.  You need stomach acid ("juices" is what my rheumy/immunologist who often vets my pieces has corrected me saying, "juices"!) to absorb and metabolize B-12, the "energy vitamin."  (Again, in full disclosure, my immunologist has a problem with "energy vitamin" and likes to add the quotes.  He is a very fussy fellow!)  It, B-12, adds oxygen to your body, giving the red cells the power to do that.  Without enough B-12, these are some of the problems you encounter, according to Dr. Oz (and with additions by my rheumy/immunologist):

  • Anemia (B-12 deficiency can cause pernicious anemia, a megaloblastic anemia) 
  • Poor memory (first sign in B-12 deficiency)
  • Depression (the poor woman on the show didn't seem to agree with the depression!)
  • No appetite (forgetting to eat)
  • Tired (walking bent over, "literally down to the ground" as Dr. Oz says)
  • Weak (feeling listless)
  • Foggy (the mental "prowess isn't there")

Now, all of the above problems are very non-specific and can go along with many different illnesses, except for the anemia, of course.  So, doing the beet test and/or consulting your doctor to have your B-12 level checked would be a good way to go to rule out an eminently treatable problem.

I had our "vinigret," the traditional beet and potato salad on Christmas Eve and Christmas Day, as described in my Christmas post.  My urine was pink and I've started back on my daily B-12 shots.

Tada!  So, here IS one easy way to tell if you may be vitamin B-12 deficient, the beet test!  Eat one beet (or drink a glass of beet juice if you don't like beets, though I'm not quite sure how one drinks the juice if you can't tolerate a small beet) and see what happens!

Before I end, I did want to mention that with me, because I've been sick for so long and because I'm AM so severely ill, I need the shots.  We tried every Vitamin B-12 pill and liquid, even the nasal spray, for years with nothing bringing my level to normal, so I need the shots.   The nutritional IV bag also helps me absorb the B-12 more efficiently.

Can you guess what one of my resolutions will be for the New Year?

Here is Dr. Oz's Family Salad to getting you started on beets if you so wish. I happen to think it's a much maligned veggie in the States! 


  • Beets
  • Olive oil
  • Balsamic vinegar
  • Garlic
  • Salt
  • Pepper
  • Gorgonzola cheese
Boil the beets until they become tender. Pull off skin under cold running water. Chop them and toss lightly with olive oil, balsamic vinegar, garlic, salt and pepper. Crumble Gorgonzola cheese on top for extra flavor.

Note: I prefer to bake or roast beets; I have always used mild feta cheese in this sort of quick salad. Nothing like a sweet and salt combination! Adding sliced onions is something I might try next!

And if I get my act together I'll post my "Vinigret" recipe.  If you like beets you'll find this especially delicious.

As always, I hope everyone is feeling their very best, only better.  Ciao and paka!

*I realized that there were at least two more ER runs which I described in this blog but totally forgot!  Where's my scorecard?

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Friday, December 27, 2013

Friday Tidbits: "You're a Migraineur!"

One of the kinds of migraines I get.  However the kind I had last yesterday is down below, so annoying that I tried to spare you. The picture might be too much, as the BBC often says.

Yesterday was a bit of a rough day for me: my migraine was not just "bad" but a bit frightening as well. Normally, I have many different types of headaches and migraines, and, given my age, I thought I'd experienced every kind I'd ever have.  I've had migraines as far back as I can remember, experiencing my first doozie when I was five, or just maybe six years old, and  I'd smugly thought there were no other surprises in store for me. Sigh.  Sometimes I marvel at my own stupidity naivete'.

For the first time - that I'd ever noticed, at least - each book page had a fuzziness and light around each word. (It actually looked pretty cool, though I'm not sure how much I'm aging myself if using the word "cool"!) When I closed my eyes, I had three quarter "wreaths" in front of my eyes, with white lights.  I called hubs but when he tried to explain where my migraine med is, I couldn't find it.  For me, this is one of the most frustrating parts of getting a migraine: that my mind can't concentrate well enough to see the bottle, even if it's right in front of my face.  Normally, we have a designated space where the migraine meds are kept but since I've moved back into my redone bed & bath, we can't seem to find the right spot for the so-important pain killers. It's easy enough to find regular medications. However, when you're in pain, it becomes a Olympian feat. (Oh, thanks, readers!  In complaining to you, I think I may have just thought of the right spot - if it's not too far. Hmmmm.)

Hubs was able to run home in the middle of his day and give me the med.  By now I was having psychedelic coloring with my eyes closed.  The room was starting to move and nausea was moving in, way too fast.  Yet strangely, the pain was not that bad.

While speaking to my rheumy on the phone - and I can't remember what led to this remark - rheumy said, "but Irene, you're a migraineur!"

Stop the world.  What?  I'm what?  No, I'm not a "migraineur."  Yes, I do get migraines in my head - and I get severe body migraines as well.  Yes, to keep the migraines under control, I try to watch my diet and have figured out which foods I can have, which not.  I try not to get (too) stressed over things.  (OK, family, stop laughing!)  I try to be good to my body.  And just as I am extremely aware, each and every moment of the day, as to what may keep me from sleeping, so too am I aware of all thing migraine-inducing, from the way the lighting is placed in a room, realizing, too, that the sun and I have a bad relationship, to watching out for glares, living in a pretty dark room and so forth.

I'm trying to figure out what it is that shocked me when I was called a "migraineur."  Was it because though migraines can and are too often 9's, bordering on 10s, driving two neurologists to do two spinal taps (link), they aren't as bad as too many of the overwhelming symptoms of ME/CFS and fibromyalgia?  The whole weakness bit is just about so much worse than anything I've ever experienced. And I've become pretty good at blocking all but the worst migraines out of my mind. Furthermore, I think I can do this PRECISELY because I started getting migraines in early childhood, due to that "window of opportunity" when learning survival skills is constant and mandatory, as dictated by Mother Nature.

Back when I was preggers with my second child, I suddenly went blind in one eye.  A neuro-ophthalmologist declared that I suffered from severe migraines, the blindness a migraine-equivalent occasionally seen in pregnant women. I argued that I didn't get headaches of any sort until hubs came out his shock and said, "you get them all the time!"  I would, evidently, complain I had a headache but not realize it or hear it (much like muttering to yourself) and would start washing floors in order to "outwork" the pain.  One can liken this survival technique as my way of discovering the Lamaz principle, distraction.

When I got my pancreatitis back in September (link), I was puzzled.  My info sheet given to me by the ER stated there are two reasons for pancreatitis.  The biggest reason by far (some say even up to 90%) is alcohol. However, I don't drink at all, not even champagne on New Years, only a sparking cider of some sort to bring in the New Year. (I think I'm going to change that back to champagne: our last few years have been so awful that lots of things will be changed: more on this later!)  

The other reason found in medical literature and told me by my rheumy was due to gallbladder. Problem with that is my gallbladder was taken out over a year ago.

The third reason, not stated, is that pancreatitis can result from certain medications.  I'd been in a very bad place in regards to migraines, almost living on migraine meds, coping with a lot of stresses, as well as allowing myself to eat foods I know eventually put me in migraine-h*ll.  One doctor says it may have been all those migraine meds that contributed (ok, maybe caused) the pancreatitis. On the other hand, it could have been another med.Yes, I get migraines, but I'm not sure why I feel like a fraud if I'm labeled, "migraineur"? The migraine med didn't help much so I'm pretty sure I may end up eliminating this med from my go-to's, since it didn't work as well as it should have. 

On the other hand, it did eliminate the body migraine, the nausea & most of dizziness as well as the colors I had floating around words on a page or what I saw when closing my eyes. However, everything is blurred now and my head feels as if a truck hit it, with eyes that feel as I'd been crying for days. And can someone take the vise off my head? On the other hand (again), this WAS a new sort of headache, with little pain in the scope of things, so perhaps this med is one I should try if/when I get a more typical migraine.

Good Grief! If I'm putting all this thought and energy into my migraines: and discussing them in such length; noting the newest kind as well as describing various experiences in my past; working so actively to prevent them; having had much testing in the forms of CT scans, MRIs, spect scan, x-rays and "things" I've thankfully forgotten, in addition to not thinking very clearly as I try to ignore this mess going on in my head as I write - well take a deep breath - maybe that DOES make me a migraineur.

As always, I hope everyone's doing their very best - only better!  Happy and safe weekend, everyone!  Ciao and paka.

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I'll take this down if it's too annoying.  Let me know.  I was just amazed to discover something so close to what I was seeing.  Normally it's stars, fire works, and so forth.

Monday, December 23, 2013

Merry Christmas!

Merry Christmas to all who celebrate this holiday - and at this time!  That may seem like a nutty sort of statement but most of the friends I have from childhood and summer camp days still celebrate the old date, January 7. We're in the middle of the holiday season, which never seems to end.

A funny story for you, my dear readers. (Sorry!  That sounds so forced!)   

On the day back to school after Christmas vacation when I was in Kindergarten, I came home in tears.  I'd found out, much to my horror, that I must have been a bad girl.  My English wasn't very good - I'd been at it only since school had started four months before - but I knew enough to realize that my friends had received their Christmas gifts and I'd received nothing.  Nothing at all!

My mom couldn't understand why I'd come home crying and I must truly have been sobbing.  Imagine how bad she felt when she realized that "Catholic" Christmas had been celebrated by all my new-found friends.  It never occurred to her that my friends would come to school with tales of what their loot or haul had been and I would be without any treasures.  Maybe she thought that I didn't know enough English yet to understand that we celebrated Christmas the old style, on January 7. 

That was the last time we celebrated Christmas only one day of the year.  After that, we celebrated Santa Claus and Christmas on December 25, "Western" or "New Style," with presents from my parents.  However, we also celebrated January 7 and Ded Moroz (Grandfather Frost), at which time we received presents from our Godparents and Grandparents.  

There is a funny bit I've found on quite a few places on the Internet stating, "You know you're Russian Orthodox if...."   One says, "you get great deals on Christmas trees and Easter candy" and that "you automatically deduct 13 days from today's date." That's because the Old Style is according to the old Julian Calendar and we in the West celebrate everything by the Gregorian calendar with a 13-day difference.  (Don't get me started on how Easter is figured out.)

Once I married we made the decision to celebrate only the New Style, considering that hubs is "western" and that was further cemented when we settled down to live in an area which doesn't have a Russian Orthodox Church. Our local church is Greek Orthodox and the Greeks - smartly - have changed their Christmas celebration to the "new" date.  But we don't discard or dismantle the tree until after January 7.  Technically, I should be waiting until January 14, the Old Style New Year's Day, but that is just way too long for me to wait. Imagine how dry the tree is by the time it gets discarded!  

If all goes well, we'll be celebrating Christmas Eve Russian/Ukrainian style tomorrow night.  There will be twelve separate dishes, one in honor of each of the Apostles.  I don't know how "traditional" it is to add a 13th dish, in honor of Christ, but our family always added in the 13th dish.  

I absolutely love Christmas Eve because on that day there are a few dishes which we (read my family and probably most) only eat on Christmas Eve, including "Vinigret," a delicious beet and potato salad with all sorts of goodies thrown in.  Most important is the "Kutya." It's wheat berries with poppy seeds, nuts, honey and other goodies thrown in, depending on what your family recipe is.  Hubs has become pretty good at fixing the kutya in the last few years.  Christmas Eve is lenten, so no meat nor dairy products, with many forms of fish. On Christmas Eve I suddenly like herring! 

On Christmas Day we have another pig-out meal: the kind most would imagine, with the turkey, mashed potatoes and so forth.  By then we are dragging.  We'll have been celebrating since late October with my birthday, then Halloween, Thanksgiving, hubs' birthday, Christmas Eve and Christmas Day now behind us, New Years still to get over with, then nominally recognizing the old Christmas Eve, Christmas Day and New Year's.  

And I wonder why I got CFS and fibromyalgia?  Hmmmm... I might want to think about that! ;)

And any rate, I wish all a Happy Holiday, as well as a Merry Christmas to those who celebrate.  As always, I hope that everyone's feeling and doing their very best - only better.  Ciao and paka! 

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Friday, December 20, 2013

Friday Tidbits: What Is My BP Trying To Tell ME?

Sometimes moms are guilty as well when it comes to listening.  This was no happy camper! 

Yesterday I finally made it to my GI appointment and I'm on Cloud 9.  You may not think going to see a doctor is remarkable but consider this: since 2009 I've made many appointments which I've had to cancel at the last minute, all because I was too ill from my CFIDS/ME/CFS and fibromyalgia. This is the first time I've been able to see my GI in his actual office. (Baby steps!)

So, hallelujah!  It was almost a miracle that I got there.  I won't even mention the melt-down I had as I was getting ready.  Nor the shaking on the outside, shivering on the inside. That I fell a few times. That I dropped many things - because of the shakes.  Or that I ended up with cuts in various places because of the shaking, shivering and weakness. That I couldn't stop the sweat rolling off my head and other parts. That getting dressed was more of an ordeal than the usual: my arm has a rotator cuff injury so I can't do simple things like put on a bra. Hubs was having such a hard time getting me hooked in that I finally yelled (yes, I admit I yelled): "you must be the only male in the world who can't get a bra on a woman."  Hmmm.  Maybe that only applies to getting off a bra and not getting one closed.  I may have to rethink that remark! ;)

Continuing: I couldn't control putting on my eyeliner.  My vision, which is so iffy, was so bad that I had trouble connecting the eyeliner with the place it's supposed to go. (The vision problem is that the eyes aren't getting the right signals from my brain, the pitocin problem.) 

My skin has many problems such as rashes and hives but almost never zits?  Well, when I got home I found quite a few zits.  My rheumy tells me that it's because of the stress of getting ready for the outside world, just overdoing it, which produced those ugly suckers.  But you don't want to know all those gory details as I pushed and pushed myself to try to get out the door.  Right?  So I'll spare you. (That's me being tongue-in-cheek, folks! I just told you most of it, I know.)

So, getting back to the appointment.  It was good but it could have been better. Don't get me wrong, I really like my GI.  However, I don't think that 15-20 minutes (tops) is enough to discuss what I've got going on with me, my very complicated and long-term problems.  And it's further frustrating because this doctor, who's been in practice for over 30 years, repeated for the nth time that he'd never seen such a bad case of impaction, occupying my entire colon which we fought during that 10-day hospitalization in late October.  The impaction he could spend a few minutes on but not address some of my concerns and observations which I feel are needed in order to get to the root of the GI aspects of my health.  We're over the impaction and need to move on.  Yes, it's great to have validation that I was in a situation that DID need a pretty long hospitalization (hear that ER???) and to know that hubs and I were right to use all our wherewithal to get me admitted by the ER. (For that incredible incompetence/neglect/unprofessionalism, see links here and here and a whole lot of other places in this blog, of late.)

But yesterday was a bit of a wake-up call.  I've finally figured out one of the things that has me concerned.

For decades I've had extremely low, verging on dangerously low, blood pressure.  In fact - and I know this is a bit mean, forgive me - but each time a new nurse at my GP's office would take my BP, I wouldn't warn the nurse that I have low BP.  Each time the nurse would have to take the BP measurement again and again until hubs and I would burst into laughter telling the poor soul which numbers she should head towards.  Hey, we get our jollies where we can!  

Just as each member in my family has something about me that's a "tell" as to how bad I am on any particular day - hub's is the color of my lips: no color or blue - my "tell" to myself is my BP.  If my BP is high (and hubs is experienced in taking BPs) I know that I'm really sick and I try to stay in bed, emphasis on "try."

Before going on, yes, I do understand that the BP is only one part of a complete picture and that everyone has their own unique BP numbers.  However, before I became really sick, my normal BP was always 120/80, a very good BP level.  

I also have orthostatic intolerance, which adds to the danger of the low BP.  Typically, in bed my BP is 90/70. I sit up and it goes down to 80/60.  I stand up and it drops to 70/50-55.  My low BP is one of the contributing factors to my falls.  It's also a contributing factor to why I can't do things.  For example, it's been years since I've been able to take a shower, I have to bathe in a tub.  I can't stand anywhere, I have to be seated.  I can't eat at a table, I have to eat in bed.  You get the picture.

All too often, going to go see my GP is really strenuous.  (Understatement.)  I'm in too much pain, I'm miserable because I haven't slept in 24-72 hours.  I have a monster migraine or I'm simply too weak, I'm "fragile" (I hate that word!) and so on.  By the time I get to my GP's office, on those really bad days, my BP will "skyrocket" to the 120's.  For me that's validation: I'm not being lazy, I'm sick.  Yes, lazy.  It's one of the Achilles Heels I live with.  I fear being lazy. (Hence so many home accidents, falls, etc. And scarier is that I do have a moment of being unconscious.)

Furthermore, with my BP in the 120's, I know that I really have to try to stop doing the little projects that I give myself so I don't go stark raving mad from boredom and inactivity - or to distract myself enough to ignore the awful pain.  However, if I don't stay in bed here are just a few of the weird things that have happened to me.  Believe me, these are just a few of the examples: 

  • I really wanted a cup of tea but hubs, on this particular day, had given me a warning not to get out of bed.  After a few hours, I couldn't stand it and went down to the kitchen.  As I opened the cabinet, a mini-Cuisinart fell down and its sharp blade cut my forehead.  (OMG: 10+ years later it now occurs to me how it could have been an eye that got hit. Gulp!)  You know head wounds: blood was all over the place.  Despite that, I was way too sick to go to the ER for stitches, even with an ambulance.  Had the house been burning down, honestly, I wouldn't have been able to get myself out of bed.  An aside: for months people would tell me (especially doctors) that I would have a nasty scar across that valuable piece of real estate.  This was before my body stopped making (adult) human growth hormone and I was always freakishly lucky not to scar.  That, along with a bit of lavender essential oil, left no scar whatsoever on my forehead.
  • One Thanksgiving: I was feeling weak and shaky from having cooked and baked since the weekend and hubs was insisting I get to bed.  However, I didn't want the "Pillsbury" Thanksgiving/Christmas Eve/ Christmas Day/New Year's Eve and Easter dinners my poor husband tries to do. (He means well and it's not his fault that he lacks the cooking and baking gene, but....) We were down to our last couple of hours before the actual dinner, which we all know is the most frantic part of any festive/over-the-top meal.  "Just let me finish this!" "No, go to bed NOW!" was said quite a few times. Without thinking, I picked out the blade in the regular-size Cuisinart - and sliced the tip of my thumb extremely deeply.  When, after 10 minutes it wouldn't stop bleeding, despite elevating my arm above my head, I had to go to the ER.  Yet another Thanksgiving to remember!
  • One more of the many incidents and I'll put you out of your misery. OK, two.  I got out of bed to go to the bathroom and in "coming to," was surprised to find myself on the floor.  On top of me was a wicker tray with stand and a wing chair.
  • BEST: in the bathroom I passed out.  You know the principle: A body at rest stays at rest, a body in motion stays in motion.  As I passed out, my arm went into the toilet down to the bottom, my head ricocheted off the toilet paper holder (breaking the holder), continued to ricocheting by hitting my shoulder hard on the sharp edge of the bathtub, ending up bouncing my head off the hard corner of my vanity.  
So BP has become a huge motivator in getting into bed and "resting."  

Last year I declared war on my health.  Oh, I've been at war to get my health back for decades, but this wasn't just war I'd now declared.  I now wanted a nuclear war declared on whatever is making me so sick and the accelerated speed at which I'm deteriorating - and losing body parts!  There aren't too many spare parts left after all.

Instead, I had another whopper of a year in terms of how much time I spent in the hospital.  Luckily, I didn't break any records, mainly the one year when I'd spent more days in the hospital than I had at home.  But this year has been close to a record-breaker.  

Getting back to the GI appointment.  My BP registered at 150/90 (if I have the diastolic right).  Hubs and I have a game where we try to predict what my BP will be, based on how many melt-downs I had in getting ready, how often I had to sit in order to prevent passing out, how much I'm shaking and all that jazz.

Boy, were we wrong.  We'd thought it would be the high 20's.

And that's what is bothering me.  Lately my BP has been too high, even breaking records with numbers such as 192/104.  That's not good for anyone, but especially someone whose BP is often 70/55. 

I don't want to put a band aid on the high BP by taking medication that will lower it.  I want to get to the bottom of why it is that suddenly the 150's are coming in regularly and that I keep breaking my BP records, that I'm into new, disturbing numbers now on the other side of the pendulum. 

What the heck is/are the problem(s)?  We're still on the "Hunt For Red October," where I was over a year ago. And how can this problem be resolved when doctors don't spend enough time with you in order to try to figure out what the underlying problem(s) is/are, nor communicating with your other doctors (as they did back in the day!) to figure out what is going on?

At any rate, I'm scheduled for a colonoscopy in early January.  And I came away from the appointment with information on the colon which I didn't have before.  I'll describe those tidbits in a future post. 

In the meantime, I hope everyone's doing their very best - only better!  Happy Holidays!  Ciao and paka.

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Wednesday, December 18, 2013

Beauty Basics for the Hospital and....

A long ago Christmas with the kids trying to get our cat, Misty, to pose as well. 

Between spending hours last night getting ornaments on the Christmas tree and a scheduled appointment tomorrow with my gastroenterologist, I'm not sure I'll be able to write a Friday Tidbits this week.  To make sure something gets done, I'm writing today.  I really need to get strong enough to start posting more often, but those of you who keep reading this blog, no matter how little sense I all too often make, know how many ER visits (6!) and hospitalizations I've had in the last few months.

So, today a bit of this and that, mostly my thoughts on ...

  • There's been a lot in the news about the FDA requesting the manufacturers of antibacterial soap to show that the claims they make are indeed true.  I was pretty happy to see this.  I use only Dove "beauty bar" (soap!) except for one exception: the Dial antibacterial pump I consider a "must" for underarms and surrounding area. For me, nothing works without that first step.  If I forget it, the two different deodorants I use at the same time simply don't work.  And it makes sense. The "foul" smell is from bacteria. With all the sweating "we" do, bacteria multiplies awfully fast! 
  • I always carry Dove in my emergency bag for possible hospitalization when running to the ER but I've now decided to add the pump Dial antibacterial soap as well.  The antibacterial soap in the hospital is just too harsh for my sensitive CFIDS/ME/CFS and fibromyalgia skin.
  • I've also added air freshener and a scent (perfume) that puts me in a good mood and allows my doctors to come much closer to me and my bed.  The air freshener is for everyone's survival, especially if a digestive disorder is lurking.
  • My sensitive skin can't handle the washcloths in the hospital so I bring a couple of my own, in a distinctive color - this so they don't accidentally get thrown into the hospital's laundry. Purple is one favorite.  Another is a washcloth that was brown but somehow came in contact with bleach. No one wants it and that poor washcloth has finally found a new purpose for its "life." ;)  Don't we all want to be useful? 
  • Ear plugs are definitely in my emergency bag.  The noise on the floor was so crazy that I couldn't even hear the TV - and the speakers were on the inside of my bed. 
  • Hospital air is dry.  Add to that the fact that we often run fevers.  On top of that, our dry eyes can drive us crazy.  It got so bad that I had hubs bring me my Evian spray in a can.  Don't scoff!  Water in a spray bottle just doesn't cut it.  A spray of Evian misted my face and I felt much better. (Or you can go insanely decadent and get La Mer's version, bliss!)
  • When you're really sick, it's hard to motivate yourself into washing your face.  The answer: miscellar water and cotton pads. Bioderma is my absolute favorite.
  • And, a crazy thing: I brought all I need for a basic manicure!  When I started to feel a bit better, I did a very slooow and minimum manicure when I couldn't sleep at night. (Who knew there's a upside to being an insomniac?)  I'm not completely nuts: a neutral color was used.
  • Finally: If you're feeling really good and bored (as I did with my gallbladder surgery last year) you can even do a couple of DIY spa treatments!  
Some of these points have been covered in the past. (link)  

Christmas is almost here.  Ugh to the craziness and yay to the food.  I love Christmas Eve dinner because it's lenten and there are dishes we eat only on Christmas Eve.  But more on that later.

I hope everyone's trying not do too awfully much and risk a flare.  Tonight the tree was fun to do once I could haul myself out of bed after taking painkillers.  Only four ornaments broke.  I managed to cut my ankle and get blood on my new off-white living room area rug.  That's when hubs and I called it quits, leaving the rest for today or this weekend. But then I went too far.  

At 1AM, unable to sleep, I snuck downstairs and spend six hours on finishing the ornaments part and cleaning up the area.  I wanted to surprise hubs, as well as send some more "in progress" pictures to the son living in Malaysia. (OK: truth be told I was bored and antsy. I hate doing nothing!)  The top of the tree needed more work but I just didn't have it in me to fix it, thinking I might be inspired later.  I sat down to take pictures and they looked fine (other than that blasted top!). Then I wanted a picture with the lights on.  Surprise! Suddenly half the lights were not working and we had tested them so much to be sure

Oh yeah. I'm going to be in great shape for that GI appointment tomorrow! ;)

Until next time, I hope everyone is doing their best - only better!  Ciao and paka! 

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Sunday, December 15, 2013

Christmas: CFIDS/Fibro/Redneck Style

This year, it seems I'm in a "redneck" mood for thanks.  Having lived in our town for over 30 years, I use the word affectionately, not to mention that in some ways, our entire family has become at the very least a "country" family, if not a "redneck" one.  ("Redneck," "country"; you say potato, I say potato!)

Each year, one way or another, there's a new Christmas album underneath my tree; they've ranged from Elvis to Andrea Bochelli.  It's my daughter who notices which song or singer I'd been attracted to each Christmas season.  

Now, as a full-fledged CFIDS/ME/CFS and fibro-mite, I'm rather slow on the uptake.  It was about the 15th time that my daughter had gifted me a Christmas album that I realized the Christmas album had become a tradition between the two of us.  (OK, I may exaggerate: I might have caught on at about year 10!)  Not noticing this for so long, however, may pretty much land me smack into the middle of the "bad mom" category since at one time, one of her Facebook quotes was, "A day without music is like a night without the stars." Or something like that.  Techno-genius I'm not and I can't find the quote now - of course. <shrug>

Like most families, we have our little, as well as silly, as well as big, Christmas traditions. OK, so perhaps other families don't usually include a mom on Christmas morning who couldn't manage a bath in the last few days, nor get her makeup or hair done - a crying shame because it's REALLY needed - and it's why this mom stays out of most Christmas photos.  Like many families, if not most, we have our bumps that go on during the night and I don't mean Santa landing in the chimney. (Was that comment just a bit too corny?)  But we have great traditions as well - or so I try to tell myself.  (Hang in here, folks. There is a story and a point here, a picture of our life as well as the ME/CFS and fibro factor!  And ER visits! Promise!  Read on, my brave lovelies!) 

For the last 28 years - or thereabouts - we've bought our Christmas trees from a certain tree farm run by "Granma". (Here comes a CFS/fibro tip: try to get your tree delivered if you can't handle going out.)  Granma had to have been 80 years old when we first "discovered" her.  Or perhaps we felt as if she were 80 since hubs and I were still in our early 30's.  When the kids were growing up - and even in adulthood when they've been around - we'd all head out in August or September and go up and down the hills looking for a suitable Christmas tree, always a blue spruce.

When the perfect tree was found - and yes, after more than a few arguments along the way, none of which were ever tree-related - we'd tag it with our name and come December 10 (our preferred date) the tree would be delivered to our house, already mounted in the stand.  Understand the "we" part started to not include me after a few years, but that's OK since I'm not one who has ever loved walking up hills and down into dales. (Flashbacks of my many summers in 1-2 months-long camps and way too many hikes!  Help!  Agh!)  As for the years when we couldn't do the tree hunt?  Well, granma had about 10-years worth of trees she had a eye on for our family. 

This year, however, insurance got the best of Granma's place and they couldn't deliver their trees to their customers' homes.  So hubs and daughter had to get the tree themselves, driving up the steep hills during a snow fall.  Hearing them try to lug the thing into the house, as well as "place" it, made me "run" back to my bat cave: I really wasn't up for the keystone cops routine.  And my hands were itching: oh boy...I sooo wanted to do the job but couldn't.  (Lordy!  I so hope that this getting-of-Christmas-trees-on-our-own doesn't become a tradition!  We're too old to start now.) 

The TV stations started revving up for the holidays and (too) many specials were on, when not too long ago the TV happened to be turned to the Country Music Awards. I semi-heard a funny song as it was ending and hit "record" and then ignored the show, going alone with whatever I was doing.  But a few days later I found the guys singing the song who'd caught my ear. I'd never heard of "Duck Dynasty" and still have not learned anything about them.... Pretend there's a transition here, please.  My brain is blanking!

I find the hardest part of Christmas to be not just that I can't cook and bake like I used to. Like so many of you, I literally cooked and baked for at least a week before Christmas Eve (Russian/Ukie foods and traditions) and Christmas Day (American/Catholic/West/Italian foods and traditions) in order to get everything ready for those two dinners.  But what's been harder to take?  Gone are the days when the entire family would be home for Christmas. 

Somehow we always "officially" started our Christmas season by stringing the lights to Elvis' Christmas album. And it's always Elvis, to the point where I've forgotten how many times we've had to replace the album because of wear.  By the time "Blue Christmas" and "I'll Be Home For Christmas" came on, I'd start to dance with the boys, camping it up, no matter how much they "hated" it.  And trust me, there were years where they hated it alright, but played along.  The one year, however, I forgot to put on the album and started stringing lights without first dancing with the boys?  They were outraged and hurt. Typical, right?

But getting back to this year and being in some sort of redneck karma, debt and gratitude.  With ER visit #1 of these last couple months, I had to drive myself to the hospital.  Getting out of the car was tricky not only because I had the mother of migraines, but the parking space was too small, combined with lugging out my bag and cane.  I stumbled against the trunk of the car and was righting myself when a guy came running over, yelling to his two women friends that "this nyice laady fell!  We need a wheelchair!"  I kept trying to reassure him that I was OK, but he insisted on half-carrying me to the ER, demanding a wheelchair and that I be seen immediately.  No one was going to argue with my knight-in-redneck armor.  Thank God!

Then with the ER visit #3 and the pancreatitis, I had to take a cab home.

Understand, you really don't want to take a cab in our town and, to be truthful, I was nervous.  After all, the one time I'd taken a cab, it felt like the tiny circus car where clown after clown keeps getting out and the audience wonders how so many people can fit in the tiny car.  Well, I was the 6th person in that cab - yes, that's sixth - and the only one not smoking! 

Hallelujah, this time I lucked out in being solo in the cab.  And the best part was that my cabbie was so nice, especially appreciated after the treatment by the ER staff.  (See the unbelievable "attitude/bully," which, hard to believe, is not the pancreatitis one.)  He was just so mellow and yet got the message across that if I wanted to talk, that was OK, if I wanted silence, that was OK as well.  That day I really needed someone who thought I was, sick, sane and not a drug seeker.  (Because really, they were the insane ones, practically accusing me of being a drug seeker when my blood work clearly showed pancreatitis!)  When I later told my daughter about the "knight" and how the man had practically carried me into the ER, she said, "Yep, mom.  Rednecks are the best!  They're REAL!"  Real nice and mannered in my book, which goes a long way.  

And so my Christmas song for the year: Hairy Christmas.  (I think that those on mobile devices need to hit the highlighted link to see the video.)

"So hunt you down a Christmas tree/
Thank God mama's cooking is free/
Round up your redneck family...."

How perfect?  A hunted-down Christmas tree is a tradition.  OK, so it's daddy's cooking that's free these days, but I'm in there somewhere too - or so I hope.  And we're going to round up as many redneck family members as possible - hoping that I can manage Christmas at the dining room table and not in my bed....all while hoping that next Christmas we'll have more Redneck family members to be rounded up. <wink, wink!>  In the meanwhile, enjoy my Christmas-song-for-this-year performance! 

As always, I hope everyone's doing their very best - only better!  Ciao and paka.

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Sunday, December 8, 2013

Children & Fibromyalgia: Interview w/ a Pioneering Rheumy Continues

Today I thought I'd continue the third installment of my interview series with my pioneering rheumatologist. I would ask my readers to please see what his unique qualifications are, which I described in our first interview. (Please don't make me bore y'all with that "stuff" again but it IS quite impressive.)  All you have to do is hit this link and you're there!  But don't forget to come back!  LOL!  And please don't be insulted that I feel I need to remind you to return - I know all too well that our brains are often a sieve.  I'll try to remember to repeat the link at the end of this interview as well.  And off we go!

Fibromyalgia (FM) in children has not received as much attention as it deserves.  I knew my rheumatologist presented a lecture in Paris in 1989 regarding the diagnosis and treatment of FM in children and so I decided to ask him his thoughts on this subject.  Might I add that I was really surprised to find that since 1989, the vast majority of FM research projects have dealt with FM in adults almost exclusively?  Those which do report on fibro and children are, for the most part, "review articles," not clinical trials or clinical research.   

Furthermore, the FDA has yet to approve an FM treatment for children.  This makes it all the more pressing to talk about this subject and get these children the diagnosis and help they need.  For those who aren't steady readers of this blog, the qualifications of my rheumy can be found here (link).  He has a well-established and well-regarded general rheumatology practice and has a special interest in soft tissue conditions like FM.  In the 31 years he's been in practice, he has published numerous times regarding FM in adults and also in children (again: read the darn link!)

Upa: Before we get to the heart of the matter, thank you for taking the time to comment on some pressing issues regarding fibromyalgia.  Today, I'd like to ask you about fibromyalgia in children.

Doc: I'm happy to discuss this with you because FM in children and teens may be present and overlooked. Worse, it may be misdiagnosed.

Upa: Yes, I'm really surprised at how many people I've met on twitter, for example, who came down with fibro in their teen years.

Doc: I have treated quite a few children with FM who were thought to have other medical problems.  When the complaints are mainly pain, a child might be diagnosed as having early juvenile arthritis; if the child has problems concentrating and difficulty sleeping resulting in problems paying attention in school, that child may be diagnosed with Attention Deficit disorder (ADD).  If one misses FM in children and attributes symptoms to the wrong problems, not only will the FM go untreated, but the child will carry a label and be exposed to side effects of various medications unnecessarily.

Upa: Can you perhaps give us some examples?

Doc: Of course. I have seen children in my practice who have been treated with cortisone-type medications for presumed juvenile idiopathic arthritis.  These kids gained weight from the medication, but were no better. In a society where childhood obesity is a real problem, you don't want to use cortisone-type medications unless they are absolutely necessary.  One particular patient comes to mind.  This 10-year old girl with FM had gained 30 lbs because of the medication and the symptoms actually worsened.

Upa: And how did you treat this child?

Doc: As I'm sure you're well aware, the FDA has approved three medications for FM: Lyrica, Savella and Cymbalta.  The approval, I believe, is for adults, so any specific treatment for children with FM would probably be off label.  Many years ago, amitriptyline, a tricyclic medication approved for depression was used to treat FM.

Upa: And how did it work?

Doc: In low doses, this medication - amitriptyline - could improve sleep. It actually enriches sleep in that it preferentially allowed the patient to get more stage 4 non-REM delta wave sleep.  Thus, FM improved in that fatigue and pain were lessened.

Upa: Did you use amitrypteline to treat the child patient?

Doc: No, I used cyclobenzaprine, which is approved by the FDA for muscle relaxation but is chemically almost identical to amitriptyline.  Not only does cyclobenzaprine help to improve sleep, but it also can relax the muscles directly.  One of the common side effects of cyclobenzaprine is sedation (sleep). Many patients can't take it during the day. However, it can be an ideal medication for FM in that this side effect is actually desirable.

Upa:  And how was this desirable when the child needs to go to school?

Doc: Obviously, the child would only take the medication at bedtime.

Upa: And was there "hang over"?

Doc: Not in this child.  However, in some children that can be a problem so the dose of the medication has to be adjusted.  Some children need as little as 5 mg at bedtime whereas others needed as much as 20 mg. There is really no way to predict based on the child's size, but a good starting dose would be 5 mg and then see how the child responds.

Upa: How long does it take?

Doc: I have seen good responses in a few days.  Usually, the child will be able to sleep better, not waking up in pain and actually enjoy physical activity during the day.  The "growing pains" tend to disappear and the child does not "act out" as much, or have as many problems concentrating in school.

Upa: Do you use any other medications in children?

Doc: Yes, if cyclobenzaprine doesn't work I might use another tricyclic medication such as doxepin or amitriptyline.  I do NOT use Cymbalta or Savella because of their potential side effects, especially suicidal ideation or suicidal actions.  The best advice I could give you is to be extremely careful, follow the child closely and use what works.

Upa: How do parents get help for their child?

Doc: One must have a high index of suspicion that the problem might be FM and speak to the child's doctor about it.  We know that FM tends to affect women of child-bearing years more than any other group.  But, FM can show up in early childhood all the way up to the "golden years" and can affect both sexes.  If the parents notice that their child is not improving, then they need to speak to their doctor about FM.

Upa: Thank you very much for your time.  I'd like to interview you again at a later date, especially about children with fibromyalgia and exercise. (Can you hear the roar out there?  Quite the controversial topic!)

Doc: I'm looking forward to it.


I hope you're enjoying this interview series.  I feel most fortunate that I have access to this rheumy.  And as for part of his qualifications, please hit this link.  It's really worth your while to go there.  And, of course, you may want to read the second interview he granted this blog (here).  I truly hope that there are those out there who find this interview of help.  

As alway, I hope everyone's doing their level best, only better.  Here's to a good week. Ciao and paka! 

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Friday, December 6, 2013

Friday Tidbits: Hunger Games & Give Me Attitude?

Oh yeah...I've had it with ER attitude....this old girl (moi, not just JL) is on fire! 

OMG!  I have finally figured out what it is about The Hunger Games that has captivated me so much.

In the last few days I've spent hours on YouTube watching Jennifer Lawrence interviews because I can't seem to stop thinking about the movie and the book.  I don't think I've ever identified with a movie or book as much as I have with THG and have tried to understand what it is that has gotten under my skin so much.  In trying to figure out why this "obsession" with THG, l came across one interview which led to another and so forth. But it was the David Letterman interview of last month that made me stop and go, HUH???

First of all, I didn't realize how funny, charming, self-deprecating, honest and even witty JLaw is.  When I stumbled upon her interview with David Letterman I couldn't believe what my eyes were seeing and my ears were hearing.  Evidently, JLaw had three weeks of stomach pains to the point where she was forced to cancel a few interviews promoting The Hunger Games: Cathching Fire, finally going to an ER where an endoscopy was done.

She was/is having problems with her intestines and has actually been vocal about it, even making fun of herself.  Example: she went to the ER thinking she had an ulcer but found out it was a "fulcer."

And so, one of the seemingly last taboos of Hollywood has been discussed - that is, by a person who's under the age of 80 - and I'm not sure 80-year olds have gone "there" either. So, good for Jennifer!  What's not so good, however, is the reporting of what her problem actually was, by those who are not in the know.  A  few papers had the nerve to say it was "just gas."  (Last I've read or heard is that her lower intestines need to be checked out - there'd been no time.)

It took JLaw's gutsy admission (pun intended) during the Letterman interview for me to finally realize why I've been so "obsessed" by THG.  One of the themes in the movies -and the books - is the helplessness one feels when the powers-that-be take away the power of a population and what that population is forced to do. Worse, it's also about what happens when a population is brainwashed.  And finally, perhaps worst of all, is the price one pays, psychologically and physically, when a people are forced to go against one's standards and stoop to the level of those around them.  

So, what does all this have to do with ME/CFS/CFIDS and fibromyalgia?  And why this, why now? Why write about JLaw and The Hunger Games yet again?

Let me tell you, I have felt helpless with each of the six ER runs I've had since October.  Like many who are reading this, I felt completely at the mercy of the staff, most especially when I knew that I was getting misinformation, bad treatment, WRONG advice and a whole lot of other incredible ....let's call it "stuff" instead the other "s" word I'd like to use, especially given what part of the body both JLaw and I are having problems with.  

So, what does all this have to do with ME/CFS/CFIDS and fibromyalgia?  It's bad news for us.  The attitude and hostility that one encounters in just about any God-forsaken ER now is just about par for the course for just about any health problem which appears in the ER, visible or invisible.  I've known of people who've had this happen to them, but in the last few years the GOMER syndrome has become so out-of-hand that I feel I need to write about a blatant example of what happened to me during ER run #3.

Oh dear.  I just realized that some of you may not know what GOMER stands for.  Hmmm.  OK, the short version: though originally used for demented elderly patients, this "sweet" phrase evolved to mean just about anyone who comes into an ER and the staff (read "doctor") feels that patient isn't worth the "staff member's" time.  It stands for "Get Out Of My Emergency Room" and an example of the usage is: "Get that GOMER out of here!"  This expression is used throughout the States. Shocked?   Well, as long as we're talking, how about SHPOS?  That acronym is also often used by ER staff and stands for "Subhuman Piece of Sh*t."  (Imagine raised eyebrows.) 

Back to Jennifer Lawrence and The Hunger Games and my identifying with it all.  

When you go to an ER, you become helpless.  You have no power, no matter what "they" say.  (Keep this statement in mind below when I describe my nurse, please.)   Worse, you stoop to their level because you have no choice.  Finally, all too often you find yourself ticked off with yourself for resorting to their game(s), even if that behavior is the only means for survival.

Which brings me to an incident during one of my ER runs last month.  I've wanted to write about this episode but no matter how I wrote it, it would come out with me sounding petty.  On the other hand, it was such an unthinkable and unimaginative incident that I felt I just had to get it off my chest - as well as to forewarn others.  And I use the words "unthinkable" and "unimaginable" in the strictest sense, not as an expression.

For brevity's sake, I'm not going to go into everything that led to the incident.  Be assured that what I leave out is not something that might portray me in a negative light.  I'm trying to spare you, my lovelies, from a dissertation.

With this visit, I'd been in the ER for quite a while, for at least a couple of hours I want to say, without a doctor coming into the room.  Without a doctor coming in, nothing can be started: no tests can be ordered, no medication given, nothing other than your vital signs documented, such as temperature, heart rate and BP. Mind you, I was so ill and in so much pain that I'd called an ambulance.  (Imagine an eye roll here: the ambulance experience is yet another issue I've been meaning to address, but again, afraid I'd come across as sounding petty.)  

Despite the pain, I'd made the decision not to take any pain medication in the hours before going to the ER, because I didn't want to mask any symptoms.  I needed to get to the bottom of this mess because I'd spent a day (plus?) howling in pain, into pillows to muffle the sound.  I knew sometimes the howl would escape the pillow and worried that the neighbors might call the police, thinking there was a murder going on in our house. (Yeah, yeah.  I know.  But I couldn't help being concerned that those poor neighbors were worried about how they'd feel if there HAD been a murder going on and they hadn't called.  I know: I'm such a "nice, thoughtful" person. I told you I was "shallow"! -  see link!)

At any rate, when I arrived in the ER, rudeness and tension were in the air.  Walking into the ER - OK, being rolled into the ER on a gurney - I could feel what I want to call "bad vibes."   I hesitate to use that phrase, "bad vibes" because I don't want to sound too much like a displaced hippie.  On the other hand, we all know that feeling when the little hairs at the back of your neck stand up and you just want to ignore that signal.  Note: when we do ignore it, it's never a good idea - we should feel lucky that Mother Nature gave us that signal, for survival's sake.

There are two incidents that were just plain odd, weird, unimaginable which I'd like to relate:

I'd done some tweeting in my ER room, which helped the time go by faster, but more importantly, it helped to distract me and deal with the pain more easily.  I was working hard on not screaming in pain and not crying.  However, things finally got so bad that I wanted to call the nurse with the little do-hicky they give you to press in order to signal that you need help.  

First, it took a while to find the "do-hickey."  Then twenty minutes PLUS passed and no one had checked on me.  Keep in mind that the door was closed so I could have fallen off the bed or could have been having a seizure and no one would have known - nor cared.

Finally, not able to stand the pain any longer, I grabbed the yoga pants I'd thrown into my handbag, and was in the process of putting on my t-shirt over my (home) nightie when my nurse came in.  One look at me and he demanded, "what do you think you're doing?"  I didn't yell, I simply said, "I've been here for well over two hours and haven't been seen by a doctor.  I'm feeling worse than when I was brought here so I'm getting out of here before I feel even worse than I do now." 

The male stocky-ish nurse stepped into "my space" and said, "that's your prerogative, you can leave anytime you want," blocking my way to the door.  I stepped sideways to get around him and he again said, "you can leave any time you want, it's your right" as he stepped sideways to block my way out yet again.  This little dance went on for a few more rounds. 

I couldn't believe it!  He'd puffed up his chest and brought it to within a couple of inches of mine!   He was in my space and in my face.  He was saying the correct thing, "you can leave anytime you want, it's your right/prerogative" but he was doing the opposite in actual fact, not allowing me to leave.  You can't imagine what I wanted to do to him and had to work ever so hard to stop myself.

Another "discussion" ensued when he said the doctor would be in to see me in a "moment," a word I've learned to despise because of situations like this.  I wanted to know his definition of "a moment."  

I might add that this "young man" had been my nurse before and that was a joke.  A real mess.  So many things so wrong that I wouldn't know where to start.

But back to the ER run I've been discussing.  Time had gone by, the doctor had finally been by and tests were being run.  Yet everything was just so "off."   Everything was an adversarial situation.  More misinformation as well....

Eventually, things had "died" down and the nurse and I were in the room alone again - we were waiting for the doctor and lab results, I suppose.  I wanted to make peace of some sort but I also wanted him to know that his behavior was not really acceptable - in anyone's world, I wanted to add.  Furthermore, I hadn't said anything about his unprofessional behavior (and a couple of lies) during at least one other visit, deciding to let things go.  I never imagined I'd have the misfortune of having him again and I was also just too sick to carry on any sort of talk about "wrong things."  And that, as it turned out, had been a mistake.

So as kindly, but firmly, as I could manage, I addressed the problem of what had happened.  I was not going to let this go lightly.  After all, this was my third ER run in a month and I wasn't being treated nor helped. Pain was out the wazoo by now.  Furthermore, rudeness of any sort is just not OK in my book.  Unprofessionalism is also not OK in my book.  I also worried what would happen if I had to come back to the ER a fourth time.  I was between the proverbial rock and a hard place of before: I didn't want to burn any bridges but I also didn't want to get this sort of treatment again.

And so I said something to the nurse about attitude.  Wow!  What a blowup!

"ATTITUDE?  You think I gave you attitude?"  Now he's in my space again - in my face, again

"ATTITUDE?  You think I gave you ATTITUDE?"  I'm stunned.  

"You think that was attitude?  I can give you attitude!  You want attitude?  I can show you attitude, right here and now," finger pointed to floor for the "here."

And that's when I sank to his level - I'd had it!  How dare he?  I wanted to say, "are you on drugs?"  I mean, where does this sort of insane talk come from?  I said, "OK, give me attitude!"

"ATTITUDE!  That's not attitude, you've obviously never seen attitude,  I can give you attitude!  I can show you some REAL attitude." 

This sort of trash talk wouldn't stop, making a couple more rounds, and by now I was genuinely interested in what kind of attitude he could give me.  I really wanted to see it.  OK, so part of me worried he might have a stroke or perhaps a heart attack because his face was getting rather red and if there were no veins sticking out on his face as he was getting more agitated it would have been only because those veins were in too deep to show.  

But you know what they say about bullies. You confront them and they run the other way.  And I admit: Lordy, but I hoped it would work here!  But, yes, I was also curious at this point.  (Shoot me!  I'm human! Uh huh?  How many of you would also have wanted to know what attitude he could give!  Thought so! ;) )

I said "Come on, give me some of that attitude you think is going to 'impress' me!  Show me what you've got. Go on!  Give me your best ATTITUDE!   I've raised 3 kids, I'm old enough to be your mother, so *I* know attitude and I'm not sure you can live up to the attitude I've seen in my life."  

At that point I think he realized how out of line he was.  

There's so much more to the psychological games that were played that night-into-morning.  There was so much unprofessionalism and bad medicine done that day.  

And note: this is the visit I was told I had pancreatitis and yet sent home without having been hydrated with an IV bag, given no medicine to treat the pancreatitis and given no instructions regarding diet - you need to rest the pancreas and not eat.  (There are actually a few other outrageous medical actions here which I'm too exhausted to address.  In other words, I remind you that you're reading a very abbreviated and sanitized version.)

And  I ask you, who the H-ll sends home a person with pancreatitis anyway - and one running a fever!

Like The Hunger Games, I felt that I was in a life and death situation - there was a distinct possibility I could die with a bum pancreas if it was left untreated.   As it was, a few weeks later I had to be hospitalized for ten days with unbelievable level of "illness," to the point where things could have turned fatal.  Two weeks after that hospitalization, I had to be hospitalized yet again for a few days.  

When Katniss had the "nerve" to wonder about the way the government was treating their citizens, I had to wonder about how the ER treated its patients.  Just as a government exists for the people, a medical system exists for patients.  

Katniss didn't want to kill anyone, to change into a person she never wanted to be.  I turned into someone I'm not when I stooped to my nurse's level and I said, "go on, give me attitude."  

What's most unfortunate is that this sort of behavior is not a fluke.  There IS an attitude problem when ER staff have their own language with includes derogatory terms such as GOMER and SHPOS and too often think that waiting for 4-8 hours is not unreasonable. There IS something terribly wrong when ER staff thinks that saying one thing one moment and then changing their minds to the opposite of what was said is normal and fine (discussed in a previous post in regards to pain medication).  There's a real problem when there are electronic records that the doctors relies on solely without taking a patient's history - but that's opening another can of worms.

What's most unfortunate, however, is that what I've pointed out is happening across the board.  And yet some people wonder why The Hunger Games became such a hit, the books and the movies?   These things are not just frightening, annoying and uncalled for, but dangerous as well.  Hey!  What would have happened if "Nurse Attitude" had indeed keeled over from a heart attack when he went ballistic?  It would have been a bit of a complication.  More complications I do not need in my life!

As always, I hope everyone's doing their very best - only better!  Wishing everyone a very gentle and safe weekend, ciao and paka!

Note: I've not seen THG's Catching Fire nor read the book yet: gotta, though!  You never know what survival skills and necessities this ol' gal might learn to be put to future use! ;)

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