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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In the ER Again: the Mystery Continues

No...it just comes from CFIDS now! 

I was on such a wonderful roll last week with finally getting back in action and writing posts.  But after this weekend, I feel as if getting back to square one would be an improvement on things.  Always first with the bad news in order to get it out of the way: I ended up in the ER on Saturday for multiple problems. The good news: I didn't need to go there in an ambulance!  Glory be: I almost feel as if I were letting the neighbors down by not having provided them with some entertainment - but then I remember we all have cable.   

Incredibly, the hospital staff was polite, concerned and ran many tests.  Perhaps it helped that my normal BP at home on bed rest runs a high of up to 90/70 but in pain at 120/80 (as documented by the hospital computer, yay!) yet in the ER it was a whopping 151/90.  I was immediately given medication for nausea. When I got to the point that my pain was so severe that I couldn't hold back the tears and asked for pain medication, they  immediately gave me IV pain meds which were documented as working.  Unfortunately, for the first time ever, the Demerol didn't touch the pain. A couple of hours later, another dose was given and I felt relief for a moment then nothing. This scared me. I don't like to think that I'm getting worse, overall, in my CFS/ME saga. 

After much testing we were able to establish that I wasn't dying - or not anytime soon. We were lucky on the one hand to find "nothing."  However, we were still stuck with most of the same symptoms, some getting worse, some remaining the same, and only one better but that's because I'm on complete and total bed rest. 

Ah, but I'm missing the "why" I went to the ER in the first place!  How foolish of me. OK, now get this. I do hope those of you not ill with Chronic Fatigue Syndrome and/or fibromyalgia are sitting down and those of you who are ill, are lying down.  We don't want anyone passing out because of my earth-shattering news.  (Yes, I do hope that you know this is meant to be humorous and not a case of being totally self-absorbed!)  So, drums and trumpets, please!

I got so bloated and swollen that I was afraid I was "getting" anasarca again. Those of you not familiar with the term, don't feel badly. I think you really only know the term if  you, or a close loved one, has had it. Even most of the staff at the hospital weren't familiar with the term and I had to keep repeating the word as I was asked, "Ana-what?"  

Basically, anasarca is generalized massive edema, a  fluid build-up in the tissues. It differs from regular edema in that the person gets extremely swollen all over.  It's also most common in patients with heart failure, renal failure and those who are extremely ill. 

Yeah, not fun and yeah, a bit scary - especially when I was told that I had to get two blood transfusions a couple of years ago.  There was fluid around all my vital organs: the heart, the lungs and so forth - pretty heady stuff.  I'd blown up like the Pillsbury Doughboy in less than three days, putting on 50 lbs in that amount of time and wouldn't stop accumulating fluid, on death's door, literally, as all my organs started to shut down. However, after the transfusions, it was quickly under control and I had water leaking out of every part of me that can leak, for months - including my ears.

He was much cuter than me!

Well, I've been swollen and bloated.  I actually took pictures of my feet but they are just too gross to put up. (See, I do have some self-restraint!)  In fact, I couldn't find anything in the closet that would fit, finally hauling out a long dress which was all stretch, so tight it made me look like a cheap hooker.  When I tried to find shoes hubs suggested, "just put your Uggs on!" and I croaked out "are you nuts?"  After trying on about ten pairs of shoes (how I wish I were exaggerating) I went with the Uggs in the back of the closet.  Hubs had to haul them out himself since my swollen body couldn't do much bending and we had trouble getting those on! In the ER I was so embarrassed that I told the doctor that I wasn't actually crazy - that Uggs were created in Australia so that those on the sandy beaches of Sydney would be more comfortable playing volleyball.  She looked at me like I was nuts - and who could blame her?  I don't think her opinion of me changed much when I asked if her last name was Hungarian.  Vhaaaaattt, folks?  It's a legitimate question.  I like to know these things. I'm always curious.

Back to the why I was there. I was so happy that someone finally knew what anasarca was.  That made the doc OK in my book.  My other symptoms were heavy, profuse sweating - like turning-off-the-shower-before-the-towel wet.  A migraine yet again.  And great numbness in my left side affecting ear down through arms and hands, the left leg and foot, getting worse every day.  An EKG was run, blood taken, urine analysis, x-ray ... all of it. Nothing was found to explain the symptoms, though much was ruled out.

So, this was the bad news in the sense that I was stuck without a diagnosis, but it was nonetheless reassuring in the sense that an ER is there to rule out the stuff that will make you drop dead immediately.  (Not too blunt, am I?) The stuff that is chronic really should be explored by a physician who knows you and if he can't find out what's wrong, then he sends you on to a specialist. That's how the system works and as long as everyone is playing by the rules, I'm fine.  I was greatly relieved that I didn't have pneumonia. (Whoops: I didn't mention the congestion, etc., did I?  Well, too much going on!)  I was relieved I wasn't in the midst of a heart attack.  I may have seemed like a hypochondriac but that episode of having pneumonia for two months last year and discovering it only because of a routine chest x-ray before surgery kind of made me realize that I needed to get to the bottom of things sooner rather than later. 

So, where do we stand now?  My rheumy thinks the sweating may be something "subtle."  I wanted to know: in what world is sweating so profusely-that-you're-pouring-down-water-and-can't-move-in-bed-because-you're-so frozen and feel as-if-your-guts-are-falling-out and finally resort to pain pills for something that isn't pain per se, but is just feeling like you-might-die-and-very-much-wish-you-could, be normal or "subtle."   Well, it may be that I'm in withdrawal from the Cybalta and/or the trazadone. 

Yes, it was my decision to get off the Cybalta without tapering. (See this post for more on my Cymbalta adventure.)  We all agreed that I hadn't been on it long enough to have things get too tough - though due to weird circumstances I had taken it longer than I wanted. My doctors observed that I don't appear to have an "addictive personality."  That is, I've never had any withdrawal from any other medications over the past 26 years - I'd started on medications only after I'd been officially diagnosed with CFIDS and fibromyalgia, therefore I write 25 and not 37 years. And so after discussing the mechanisms of how Cymbalta and trazadone tapering off works differently form the way nicotine and opioid withdrawal might work, if I felt OK with stopping suddenly, to go for it. I don't like to draw things out and went off cigarettes cold turkey without any problems after smoking for a few years.  (Do I sound defensive if I say do you have any idea how much reading and writing is done as an English literature student?  LOL!)  I took up smoking once my kids were older and then again stopped cold turkey almost three years ago and had no problems - other than more pain in general that still hasn't stopped.  But the smoking is another story.  I've never had opioid withdrawal at all, knock on wood.

At any rate, yesterday was truly hell and I hope that I'm over the worst of it.  I slept last night after a dreadfully long day full of severe nausea, lessening numbness, moderate migraine and  sweats out the wazoo - my bedding was more drenched than ever, something I thought to be impossible.

My rheumy said that we can all hope that it's withdrawal symptoms and not anything more "serious," so I'll hold out for a bit longer.  Hallelujah for the no sweats upon waking up this morning, just a bit this morning with sweats every once in a while which I can take.  The shaking is gone for the most part.  No migraine, only a bit of a headache that I can tolerate.  My hands are only slightly swollen. Yeehaw!

I also want to know in what world is opioids considered addictive and Cymbalta and other such medications not? But that's for another post.

Do you agree with my rheumy and think what I'm going through now might be withdrawal from the Cymbalta and trazadone?  

As always, hoping everyone out there is feeling their best, only better!  Ciao and paka!



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Friday Tidbits: ER & Sleep Survival

No one said it had to be an UGLY duffle bag and you never know: TJMaxx just might carry one!  (And the FDA will spontaneously change their minds about Ampligen tomorrow!)

"It's Friday Tidbits time, it's Friday Tidbits time..."  I'm so sorry I can't write out the music for the musical score (in my mind it's sung to "It's Howww-dy Doody time, It's Howdy Doody time...") but I'm just so thrilled that it's Friday again.  It's been a rough week.  And, yes, I feel as if I'm saying this with more and more frequency each week.  I'll need to work on that: sorry!  I'm hoping that once the holidays are truly over, once the remodeling is done, a cure for CFIDS/ME/CFS and fibromyalgia is found... now THAT'S mighty depressing ... sorry again!!!

But in true, recent family tradition, I made it to the ER yet again.  Old news, right?  But there is some NEW news that I've been holding back until today and that is: this time it went well.  Miracle of miracles, it was as if I had an acute problem, as opposed to the way I usually feel that I'm treated, as the patient with the chronic pain/illness and some sort of murky problems, thus deserving of bad treatment.  Usually, half the time the staff is totally unaware of what fibromyalgia is (or that it's not a made-up illness, as in Kiliwonga Disease, a disease I just made up this very moment) and can't get their heads around it.  Yes, the commercials for a certain medication which features fibromyalgia has gotten us onto the radars of more John Q Citizens knowing about the painful "syndrome," but I am beginning to think that those who work in hospitals do NOT watch TV, so that's not much help.  Forget about them understanding anything about CFIDS/ME/CFS - now THAT is certainly asking for too much. Instead, once the "F" word or the "C" word are mentioned, the staff starts to talk in very loud voices, confusing who is NOT "getting" it.  I feel like telling THEM (and sometimes do) that THEY are the ones with the comprehension problem, not I.  And no, I don't say a word about the loudness until I can see that they could care less about learning anything about these illnesses.  You'd think that after going to the same two hospitals for the past 30 plus years, they'd have learned quite a bit by now, but that is definitely too much to ask for! 

At any rate, the ER visit after the festivities around my bed (because I was too sick to make it downstairs for either Christmas Eve dinner or Christmas Day dinner) we needed to have an ambulance come out to "fetch" me to the hospital.  The men were nice enough, but insisted on seating me in a chair they strapped me down into with the consequence being that my BP kept falling down into the toilet and the men had no way of hearing it at all.  (They didn't see the humor in my "Oh, I must be dead!" joke, humbugers that they were.) They minded me not one iota when I tried to explain that if they could just pitch the chair to at least a 130 degree angle, I wouldn't be getting sicker and sicker with each step and that they might then actually be able to register a BP reading.  By the time I got to the hospital, my BP was on the other end of the spectrum, high out the wazoo (for me) all because of the sitting up part of the adventure.  They've also obviously never heard of POTS or Orthostatic Intolerance.   But they were at least NICE, which is something I always cherish since "niceness" just isn't done much these days, anywhere, anyway, by anyone, or so it often seems.  

But it's time for the Tidbits part of Friday, so on with those bullet points we've all become so fond of (I hope):

• In trying to reason out why things went so well on the ER front, I finally figured it out, though it took me a few hours once I got home. (The brain's always the first thing to go!)  The very first nurse who attended me was a guy I used to know, the carpenter who'd done quite a bit of work in our house decades ago.  He's always been very quiet and reserved and I think that this new job suits him well and vice versa.  Anyway, he was my first nurse when I arrived and didn't insist on taking my history, seeing how ill I was, willing to wait the two minutes necessary for hubs to park the car and get to us.  Sooo refreshing!  Upon seeing him, I said, stupidly and goofy enough, "are you my G?" and I think he might have been the charge nurse for the early AM hours.  I absolutely believe that he set the tone of the visit.  He didn't yell as he spoke, but was quite quiet and would kindly ask others to lower their voices (gasp!).  

I think that just as a nurse can put a negative spin on how and what things happen as a result of their reportage to the subsequent doctors who see you, while others put a positive spin in their report, G must definitely have put a positive spin on things.  He most certainly knew that I was sick even back when he worked in and around my house and knew that there was no "game" or scam going on.  It's a bit hard to hide or fake illness if you have the same people coming to your house on an almost daily basis for a year plus.  So, I was very lucky with the ER this time around, no snippiness or outright hostility going on by any parties involved.  And I was given pain medication which helped me A LOT.  For the first time, getting a CT Scan was a problem, until they pumped me of something that made me sleep very nicely, thank you ever so much!  Oh boy, how I wish I had access at home to whatever they gave me: it worked well with giving me pretty refreshed sleep, certainly better than I normally get with my very best sleep.  Anyway, onward...

• I've resolved that from now on, we are going to be realistic and understand that my ER visits can happen very quickly and, truly, with little warning.  So, I'm packing a small duffel bag (or some such) to be put in the front hall closet along with a few necessities.  Now, what kind of necessities could possibly be needed for an ER visit?  Ummm... earplugs and eye mask are definitely on the list, because if you don't go in with a migraine, you'll certainly  have one well within 30 minutes of appearance, absolutely guaranteed!  The blankets and towels we kept putting on my face to shield my eyes from the light (and why is it that staff has no clue that light hurts like heck when you have a migraine?) made little difference.  I most definitely need earplugs to protect my ears from all the noise that everyone seems compelled to make.  And what IS it with the noise?  Do they think it is their God-given right to make as much noise as possible, thus making anyone sensitive to sound feel as if they are living in one of Dante's rings of hell - and I know that I can't be the only person in the ER sensitive to sound!  When I remarked that no one there could ever work in a library, hubs proceeded to tell me that it's been forever since I've been in a library as libraries appear to be as loud as malls these days.  So again, what's with the noise everyone insists on?

I also always forget to pack shoes (I DO have more important things on my mind if I need an ambulance to drive me all of five minutes away!) and when we arrived at the ER door in order to leave for home, it had started snowing.  So, shoes are a must-have for that bag, as well as Dove soap.  Anytime I wash my hands or indeed any other part of me besides my face, I break out in a rash, so Dove has to be taken with me.  (We're not talking big bags, but enough to also hold my Kindle and iPad ... you never know when I might be inspired to write a post!  Haha!)

• And finally, I happened to mention lamps with toggle switches last Friday (see link here) for easier access to turning off your light at night, especially if you are an insomniac. (Plus see one viewer's comment for the touch pad after the aforementioned post).  Hubs actually found the lamp I needed once he read my post and so I'm happy on that score, blissfully so!  But now we have the whole nightstand issue.  I realize that if you're in bed 24/7 and get out very rarely from that sumptuous bed, then there's often a problem with the nightstand.  Mine was beautiful but completely impractical, so I'm borrowing the guest bedroom's nightstand, which IS perfect, until I can get one that goes better with the furniture in my bedroom.  But  after huge consideration and thought, here's what I think makes the "perfect nightstand":

• Drawers not too wide as then it's difficult to pull any out one of them from any angle when you're still lying in bed.  I like a nightstand about 24" wide.
• Drawers need to be tall enough to able to hold a box or boxes of your prescription bottles and other tall necessities.     
• Drawers should not be too deep or you often lose half the paraphernalia you need to slippage alone, to the back of the drawer each time you open it.  (Can we spell "frustrating"?)
• I like a nightstand that can hold two lamps.  One lamp is for a higher wattage for seeing things in the room.  The second lamp is only 40 watts and I turn it on as a signal to my brain that we are now preparing for bedtime.  Of course, the signal doesn't usually work, but it gives me a fighting chance at least.  Without it, I'm doomed. 
• I also like having more than just a small clock on my nightstand, but a radio/CD player/thermometer so that when I start sweating (many times daily) I know if it's me that is hot or cold or if it's the room.
•  Finally, I also like to have a pretty, opened box on the stand where I can put my lip balm, floss, notebook and pen, as well as other little necessities.  When I figure out how to deal with the cell phone, numerous pairs of eyeglasses, drinking glasses and the TV remote with any amount of success, I'll let you know - in other words, when pigs fly....there IS no solution that really works! 

And so it goes.  I hope that everyone's doing their absolute best, only better.  I hope everyone has a wonderful weekend.  And finally, I wish everyone a Happy New Year, with all the best of everything.  In case we don't get a chance to "speak" before 2013 comes around, I wish every single one of you out there ever so much great health, success in all you do and, most importantly, much love in your lives.  Ciao and paka!


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Zebras Rather Than Horses?

"Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace."           ~Victor Hugo 

Yesterday and the day before (Christmas and Christmas Eve, respectively) turned out to be a bit of a surprise, and not just an "Oh! surprise?"  but a  completely out-of-the blue surprise.  At least it was for me, the person who has the dreaded CFDIS/ME/CFS and fibro with a list of complications that reads almost as long as a Victor Hugo novel.  (Which reminds me that I do want to add a page to this blog where I actually list the symptoms of CFIDS/etc and fibromylagia, the symptoms I have, as well as those I've managed to miraculously escape thus far.)

But first, on with what I have at hand.  I've written about red herrings and the major military operation which I've now dubbed "The Hunt for Red October" (see link).  There I explain that I know that I have "something new majorly wrong with me," the condensed version here.  Finally, my GP and rheumy are now trying to get down to the bottom of it all, scheduling in specialists from other fields, but what slows us all down are these red herring which are constantly being thrown in the way.  My GP and rheumy, I believe, as well as even the ER docs, are starting to look for zebras and not horses, so to speak.  Things are just too strange, too weird, too unexplainable, but very annoyingly THERE. 

Like most of my family, I've been fighting a particularly nasty strain of a GI bug for the past year or so.  OK, perhaps they're not fighting a bug every other day, like I am, but they are fighting it regularly nonetheless. It's the warm winters, I tell you.  Well, that and the "fact" that someone had to have stepped on a mirror and broken it: it's the only reasonable explanation for our cruddy streak of bad health, I tell you!  We have definitely become frequent fliers to the ER and even for hospitalizations. 

Since a couple of weeks ago and the visit my GP and then my surgeon the following week, I've known in the back of my mind that I wouldn't be able to do any cooking or baking of the Christmas Eve Dinner, my favorite day and meal of the year.  Worse, I wouldn't even be up to sitting in the kitchen to command  instruct hubs and daughter as to what needs to be done, explaining the details that are kept out quite unintentionally (Ha!).

You need to understand that Christmas Eve dinner is absolutely sacred.  It's the day with the meal which as a child we were not to eat anything at all until the first Star in the Sky stood out.  (Luckily, we were not on Daylight Savings Time!)  Then, since we were still observing the Advent lent, the 13 traditional food on the Christmas Eve table were vegan.  Some of these foods were made only once or twice a year, so there was a real specialness towards Christmas Eve.  I was always most certainly interested in the food than in the gifts which would arrive the next day.  Better yet, we ended up celebrating two (yes, you heard me, TWO!) Christmases, one on December 25 when we would get the majority of our gifts (and awful gifts they were: dominos, cheap plastic comb and mirror vanity set or pj's and socks).  We were definitely poor.  Then on Russian/Ukrainian Christmas Eve and Day, we were able to repeat the whole kit and caboodle on January 6th and 7th with our Godparents and Grandparents giving us presents on Eastern Orthodox Christmas and all the foods were served once more for Christmas Eve and Christmas Day, the latter with meat, dairy, etc.

Since I've been married (to a Catholic) we've made compromises.  We do the whole kit and caboodle Christmas Eve food, most of which hubs won't even try to taste because he is THAT picky an eater.  As a consequence, we've always had to make a few compromises on which foods would be on the table so that he and my picky kids would have something to "enjoy."

And I am such a Christmas fanatic!  Not only do I cook and bake most years, decorate the house to within an inch of its life (though as elegantly as possible) and then on top of it all.... Well, I had a large dining room table custom-made which will seat 14 people quite comfortably, as well as Christmas China that will serve about 40 people, all so that the kids would never even think of not coming home for Christmas.   Christmas is MAJOR around here!

Well, as they say, "man plans, God laughs."  As much as I've always wanted those kids of mine to never even consider for a moment that they won't come home for Christmas with their spouses and vast numbers of children, the joke's been on me.  Elder son is always living in some most inconvenient corner of the world thinking he's some sort of reincarnated Indiana Jones, but for the fish farming community - or perhaps it's Crocodile Dundee?  Who knows?  He's not around much any longer.  Child #3 has his own thing that he does and that leaves daughter of mine to make it home for the meals.   However, I swear, half the time I think she does so only because she wants to figure out the little secrets of the recipes served for when her time comes.  

So, why am I going on and on about this?   It's because I want you to understand the magnitude of what happened on the day before Christmas Eve.  I was sicker than any proverbial barnyard dog and my daughter had tears in her eyes from seeing me just that sick - actually, since she's seen me almost dying how many times, those tears really freaked me out!  My neuropathy was spreading and painful, most of my hand from last year's surgery was swollen and four of the fingers were now numb, pain moving from my gallbladder surgery sites to other parts of my body and returning, I was experiencing  migraines and body migraines, the list went on and on.  We huddled up together (between unpleasant runs - hubs carrying me - to the other room when necessary) trying to figure out if an ER visit was necessary.  The pain was off the chart, there was new stuff I'd never felt before, and I must have looked like death warmed over.  (And I definitely didn't want to go with chipped nail polish!  Priorities, ladies!)  I finally decided against going, not wanting the nasty "invisible" illness treatment that usually happens when coming into an ER with anything less than an ax through your head.  Funny, I actually saw that once, and the guy was sitting out in waiting room...truly!  (But I digress!)

On Christmas Eve I felt somewhat better (the usual pattern now going on for months) but I finally had to make a "mature decision."  I called hubs up from the kitchen.  Oh my yes, I guess he does indeed love me if he and my daughter spent two days cooking food that they wouldn't for the most part be eating!  (Although that could be a guilty mind and/or seeing how pathetic I looked and sounded.... now those are reason that I do NOT like!)  At any rate he  and #1 daughter came into the room and I told them that there was no way that I'd be able to get down the stairs and then sit at the table eating.  We would have to eat in our bedroom and keep me in bed.  The relief on their face was priceless.  The burden removed from my shoulders was almost miraculous.  

We ended up having a wonderful dinner, laughing, joking and having a very low-key dinner, though with Christmas China, of course.  But what a sacrifice on my part!  We almost never eat in our dining room.  I have a special tablecloth and napkins just for Christmas Eve and then a selection for Christmas Day.  We had to skip the beautiful table centerpiece we'd ordered for the first time in years and not able to look at the Christmas tree which I was finally able to help decorate a little bit - although I managed to break three very special ornaments, plus a foot-tall Christmas angel, cracking her porcelain wings.  Worse, I know that had anyone else done this, I would have been as angry as a hornet whom a crazy person'd had the nerve to disturb.  Yep, it was definitely time to get  back to bed for me.

By Christmas day I couldn't get out of bed either.  We had dinner in my bedroom again.  However, by 3AM, I was so sick that we ended up calling an ambulance to get me to the ER.  There, testing was done and though everything came back more or less "normal," (high BP for me at almost 150 over whatever, up from it's usual 70/50 lately and temp 98.6, up from my usual 95.5).  They did a CT scan with the dye and found that I was "clean" of whatever.  However, they discovered "atelectasis," a partially collapsed part of one of my lung lobes, not surprising with the gallbladder surgery, the pneumonia and perhaps even the "newly-diagnosed" hypothyroidism.  Thank goodness we'll be seeing my endocrinologist in a just a couple of weeks.  To see him will be like preparing for a grad school exam.  I need to write everything out as coherently as possible, in brief bullet points as to what the newest developments have been and then the prioritization I believe is needed, to then be compared to what HE actually thinks.  I swear, I think 5 eight-hour days would not be over-doing it, but alas, I'll have only about an hour.  

A slightly funny thing happened today as I was leaving the ER today.  The ER physician (whom I've never seen before) was almost apologetic that he couldn't find more that was conclusively wrong with me, number-wise, so that he could have admitted me to the hospital.  It as a strange moment because I've not gotten this sort of "feeling" or "hinting" in at least 20 plus years.  He was about my age which would put him into that, "Golden Era" of physicians as far as I'm concerned.  There was something about his being that felt as if he was pretty certain that I shouldn't be going home but up to one of the floors where real workups could be done... something that no longer happens in our era.  It was a very bittersweet fraction of a second, but it was there, and it gave me a glimmer of hope: someone BELIEVED! 

And so, going back to Victor Hugo's quote, appropriate, given yesterday's release of the movie version of "Les Miz".  Unfortunately, I'm too sick to go see the movie, but I read the book back in 8th grade and loved every minute of it, and have been lucky enough to have seen the stage production a few times.  I do think I've always had it in me to think that it would serve me well to show courage for the great sorrows in my life, while showing patience for the small things, though in full-disclosure, patience has always been a downfall of mine, no matter how much I've worked on that alone.  However, and unfortunately, as a CFIDS/etc and fibro, I have trouble going to sleep at all, a little bit of spoilage in the ointment, no matter how virtuously I may I act.  

And finally, next year I'm ordering a tiny tree for my bedroom as well.  If we get stuck eating any Christmas dinners in our bedroom again, I want a tiny tree nearby that I can see while eating all the wonderful food.  

And so, as always, I hope all are feeling their very best, only better.  I hope that those who celebrated Christmas had a truly special one.  Ciao and paka!

Friday Tidbits: Blubbering Idiot

Oh heaven help us all, it's Friday and that means "Friday Tidbits," no matter how I feel.  I have a real bugaboo about making promises and not keeping them.  At any rate, I finally had the energy to look at my Facebook page yesterday to let y'all know that I'm still around but that it's been a rough patch I've been going through. And the holidays aren't even here yet!  (Irene bangs her head against the desk surface.)  How DOES the CFIDS/ME/CFS and fibro patient survive the season?  I'm not entirely sure.

But I do have a confession to make about myself: I don't allow myself to cry, though that changed this past week.  I just don't allow myself that luxury.  I do cry every once in a while, especially when I'm really angry about something (which just makes me angrier and then I cry harder, of course) but for the most part I try not to allow myself tears when it comes to being ill.  My feeling is that if I start, how will I stop the flood?  Besides, it feels so manipulative.

I'm pretty strict about the policy too.  In fact, I remember that when the kids were around the 10-years-old mark I'd taken them off to a movie for survival purposes one August day before school started.  Now August truly has the most horrid movies.  I think it's because Hollywood realizes that it's the only time that they can hoist off their stinkers upon poor parents who are desperate for a couple of hours of keeping the kids occupied.  Hollywood's not stupid: it realizes that parents have done every activity known to man by August and everyone is bored silly - consequently, any movie at all will do at that point. Anyway, the movie that afternoon - and who even cares to remember WHAT the movie was - had a scene in it that was funny and sad at the same time and suddenly I looked over and saw three sets of eyes staring at me with mouths open.  I asked what in the world was wrong and they all just kept gasped and one finally said, "Mom!  You're crying! You NEVER cry."  I thought they were nuts but thinking about it for the next week or so (obsessing?) I realized that the little stinkers were absolutely right.  I did try to protect them from the worst parts of my illness and really they only saw the bad stuff when mom was in the hospital and they weren't too sure what went on in there.

But in trying to protect the kids from as much of my illness as I could, I had given off this air of things don't hurt me.  Funny how things can be taken.

The purpose of the story?  I guess I just want someone to know that I've worked really hard on protecting my kids as much as I could, though I often think that THAT has blown up in my face and that they don't REALLY get it.  

And I also wanted anyone out there to know that when I say that I cried more this week than I've probably cried in my entire life, I'm not saying this lightly. The pain has been excruciating but I think I could take it were it not for the fact that I'm just so darned tired of everything going wrong with me every time I turn around.  And you know it's bad when there are two reasons that you don't want to go to the ER: 1) because you haven't bathed in so long and REALLY stink because you've sweat so much and 2) because telling the ER staff what is wrong with you is just beyond what you're capable of doing.  Really?  Are those reasons at all legitimate?

And you know: I should learn to keep my mouth shut sometimes. I had praised our ER in an earlier post.  Well, this time it was a nightmare.  The staff was loud, rude and obnoxious. The lighting was horrid and obviously when the "state of the art" rooms were designed, no one took into consideration anyone coming in with a migraine also in tow.  Actually, my migraine was barely a migraine until I got to the hospital and all the noise - with an empty ER!  I was puzzled for a couple of days as to why my treatment was so night and day compared to the last time I was there and couldn't figure it out. 

And then BINGO!  I got it.  How could I have been so blind?   This time I had come in with an invisible and chronic illness that couldn't be measured.  I was no longer in there with a problem which could be fixed by an operation nor could it be measured by any testing. Ergo, the system which deals so well with acute problems, but extremely poorly with chronic ones, was in full blast mode and then some.  Ah!  Now I realize why one of the nurses that I had during the surgery stay had disliked the ER so much!  

Oh, they were generous with the pain meds - I must give them credit where credit is due.  In fact, they gave me so much that I got to sleep for five hours in which I have NO idea what they did, what all was ruled out, mostly because I didn't make notes when hubs told me and I should have, but really, I just don't care this week.  Furthermore, I do think that if I ask hubby one more question about the ER visit he may choose to risk prison and just shoot me.

But the difference was night and day.  I had back pain, chest pain and breast pain, was nauseated - and fed up with that since I'm the first to admit that I don't do nausea and when it hits I simply can't cope with it.  I always say, give me anything but nausea and a sore throat.  (Do I sound like Forest Gump?)  Actually, I've been dealing with the nausea pretty well, since I've had it almost non-stop for about a year but it's been really hard to control with medication for the last six months and besides, wasn't it supposed to go away when my gall bladder was removed?  And of course, it hurt to talk since the incisions in my abdomen from the gall bladder surgery have gone into full pain mode now.  I guess the part where my immune system has something to fight has given up and decided to turn around and retreat.  So after crying all day, while the painters were in the house trying to be very quiet but it is just so annoying to have anyone around day in and day out and hearing every bit of the sanding that goes on (plus, cough, cough cough!), the pain getting worse each day, by Tuesday I was a blubbering idiot behind closed doors.

And really, is there anything worse than a blubbering idiot who doesn't even know what IS wrong because she has no short-term memory at all?  I had to have sounded loony because it was this and that and this and the other.  Thank heaven hubby was able to give some sort of history - after we debated whether or not we should go to the ER for over 8 hours.  The neuropathy in my foot was giving me a hard time, then my knees would go into a pain where they felt like they'd been glued on backwards then another area would take over.  The anti-inflammatories aren't doing their job and my hand which had the surgery is puffed up all the time and hurts like you-know-what because just think of all the nerve endings in the hand.  It was the entire Civil War going on inside me with several major battles going on simultaneously and with one part of the body going into the off-the-chart pain to another part taking that honored place to another.

After arriving home from the ER we were able to schedule a mammogram (yep - 7 years since the last one) and I found myself almost hoping for cancer.  Why?  Well, anyone with CFIDS, etc will understand: I wanted to be taken seriously.  I didn't want that loud talking from the hospital staff as if I were mentally incapacitated, deaf and/or didn't understand English.  And yes, when I asked if they could please use their "indoor voices," there were quite offended and talked louder - the ER staff, that is.  

After the imaging, the radiologist came in and explained that they found some calcium deposits but nothing else.  Well, I wanted answers.  Where had the pain come from?  I had certainly not imagined it and I wasn't in a mood to be bullied any more.  To give the radiologist credit, he did try to talk to me about that one and he tried to give me reasons for breast pain.  When he mentioned that back pain could be the cause of breast pain, hubs and I were so excited that we both yelled out "Bingo!' at the same time.  The back pain had been so bad that I had even considered allowing my rheumy to give me some trigger point injections - but chickened out.  Nothing else was helping out with any of my meds, so I thought, why even bother going through that "ordeal"?  I have enough shots every day and besides, I was hurting from a phenergan shot that one of the nurses gave me in a very odd place on what I thought was supposed to be my bottom, but kind of missed her target.  No, it was time to go home and continue the tears.

They seemed safer than any hospital or doctor that day and all of this past week.

Hope the rest of you all are doing your best, only better.  It helped to talk.  Thanks for indulging me.  Ciao and paka! 

Friday Tidbits: ER tips

Oh yes!  Today is Friday, the day of the week when it seems that IF we're going to get sick, it'll most definitely be after 3pm (though, unfortunately, usually at 5pm), just as doctor's offices are closing for the weekend.  Tell me you haven't experienced this at least 10 times in your life, especially if you're a mom with a gang of kids who bring home all but the seven plagues of Egypt into your home.  Huh?  I thought so...!   And having CFIDS/ME/CFS and fibro or any chronic illness seems to bring us to the ER all too often.

Given that last night it was my (adult) daughter's turn to grace our local ER with her presence (she works with kids so she too brings home all sorts of fun germs and viruses) - though not on a Friday night, thankfully - I thought I'd list a few "helpful hints" about ER visits in general.  I swear, these last few years our family alone seems to be keeping the medical industry in our area in business single-handedly, with little exaggeration.  I'd love to relinquish THAT title!   Really and truly, contrary to all indications, we're normally a "disgustingly" healthy family, with the one notable exception being me. I've taken to trying to remember if I'd accidentally broken any mirrors in the last few years and one does come to mind but surely it's been seven years by now!  Oh well.  It is what it is.

And so onwards with my ER tidbits:

• If you live in an area where you have more than one ER, I think it's preferable to go to one consistently, if at all possible.  At the risk of making our family sound weirder than ever, there really is a certain feeling of "comfort" and "coming home" when you go through those doors and the hospital personnel recognizes you. Suddenly you're a person and not a statistic or a number, an important distinction if you're a "legitimate" patient who has serious problems which are already recognized by the staff.  
• If you go often enough, a box of chocolate or some flowers sent to the department at a later date goes a long way in the treatment in coming months (or days) because staff remember and are touched.  After all, who ever thinks to remember the ER personnel, and yet there they are, working to save our lives, often under the most disgusting conditions.  A token gift just shows them that the staff is not simply numbers but people too.
• It's not always possible to go to the same hospital ER because your doctor may decide to admit in only one hospital, but make sure you know which hospital(s) all of your doctors admit their patients and go from there.  I always feel knowledge is power and every hospital has it's own idiosyncrasies and rules.  (If you're a reader, I recommend The Man Who Couldn't Eat by Jon Reiner, and the screw-up with his Crohn's Disease that was messed up because of...well, read the book.  It's surprisingly funny and if you're into food or NYC, you'll especially love it!  It's also available at Amazon at a bargain price.)

• Try to be distinctive in some way, but in a very nice way!  Being recognized by ER staff (ie, making you a human and not a number) can also extend to something silly, though memorable, like silly socks or funny undies; girls, think cute boxers (thongs are a dime a dozen, I'm afraid, and sort of a turn-off, giving off the wrong vibe - you're going to an ER, not a "gentleman's club"!)  My daughter loves to buy wild Betsey Johnson socks at TJ Maxx and somehow seemed to always have a pair of them on whenever she was run to the ER.  The staff learned who she was long before "her time" simply because they wanted to see the latest pair of crazy but cute socks.
• Bring a list of the meds that you take, please!  It was a rookie mistake on my part that we forgot to bring a list during my ER run and subsequent surgery two weeks ago and then proceeded to forget to mention one of my scores of meds. Unfortunately, after surgery, I really needed that forgotten medication.   Furthermore, if you're admitted: 1) ask your attending if you'll be able to continue taking all medications; 2) ask if there is any med you should bring from home.  In my case, we didn't realize that we should have brought my own thyroid med (good to know now) but to be fair who could have realistically predicted such a rare reaction such as my hives, itchy skin and rashes suddenly appearing?  Also, the only way to get my Adult Growth Hormone is by courier from the insurance company, so that is always brought to the hospital and locked up in a refrigerated case.
• Between one med forgotten to be mentioned and a second checked off the list by my doctor AND NOT BEING INFORMED ABOUT THE CHANGE BY HIM makes me feel that next time I'm in the hospital I may ask for someone else who may cover my regular GP.  However, when I next see my GP, I am most definitely going to discuss this with him.  I like to be included in my care if I'm conscious - just a bit of a quirk with me, I suppose!  I should also not be so "uncomfortable" in the hospital (understatement) that I end up begging my attending to allow me to go home with the result being that I ended up being rushed back to the ER by ambulance within less than 24 hrs, dying and on the "iffy" list for a week with my surgery last year.
• Point: you must have good communication with your doctor - sort of like with Dr. He's-A-Hunk!, who sat on my bed, invaded my space and looked me in the eyes while explaining everything to the nth degree.
• If you do have a Doctor Hunk, or are worried that you may not remember things told you, ask your doctor if you can tape the important points of conversation or have a friend or family member with you who can help out as your patient advocate.  Some might mind being recorded, but others might not.  I think it wouldn't hurt to try to ask if you add that a patient retains only 10% of any conversation.  Heck, I know some doctors who would consider being recorded as the proof of what their Mothers always told or treated them as - that they were indeed the "Second Coming," if not the "Original."  Actually, I'd probably run in the opposite direction if I saw that attitude!
• And as with all things, trust your instincts!  If you think something is off, question it or ask for someone else to see you.  Talk to the charge nurse or whoever is in a position of responsibility for the ER running smoothly.  This is something I never for a moment considered doing, being so sure the system is correct and was shocked when I heard my daughter doing so - and she was so right!  Don't start a "p*ssing contest" or wait until things get too out of hand and no one will be able to unravel the mess.  On the other hand, don't complain if you don't like the color of your doctor's shirt, either.  Don't forget how difficult we are to treat.  But if the doctor starts putting you in the psychiatric or psychological wastebasket, it may be time to see if things can't be changed.  So, if things are off, when the little hairs on the back of your head stand up, THEN quietly ask for someone in charge.  And don't forget that you catch more flies with honey than you can with vinegar!  
• One final warning, to be used sparingly.  If the ER is stalling to get you to the back rooms, you may have to do some creative thinking.  Our daughter was told to be rushed to the ER at the "major medical center" and that from there she would be taken straight to the floor that dealt with her health problems.  Because time was of the essence we were there in less than 3 hours, "flying" the entire way.  We then proceeded to wait for 4 hours to have her seen.  Attitude was horrid by all personnel, especially in an empty ER.  Later other patients arrived and left.  Nothing we said would help, including begging them to call where her doctors were waiting for her.  We should have called an ambulance to drive her to the ER but because she was in such grave danger, we felt we couldn't wait for the ambulance.  I was about to go outside and call for an ambulance, but an ambulance is not allowed to come within x-amount of space of a hospital for legal reasons (more like "agreed upon reasons," if you ask people in the know who will "talk").  So, if you have a critical condition and drive yourself to the hospital, you are doing yourself a disservice.  The wait almost killed my daughter (you should have seen the dropping of everything once they looked at my daughter and how many doctors were suddenly working on her as the word, "lawsuit," was obvious on everyone's face).  Because of this wait, it caused her to stay in the hospital an extra two weeks, making us eat the worst yet best Thanksgiving dinner around her bed, cringing at the food, yet oh so happy she was alive.  However, she then had complications for the next year which may very well have stemmed from this unforgivable delay.  

And on that note, I wish everyone a wonderful weekend with all feeling their very best, only better!  Ciao and paka!

Finding needles in haystacks while dieting.

Eating my way through England in the late '80's.

If ever any of my three (charming) kids to look at this post, a massive cry would arise, I just know it.  You see, they already think that I'm an eating well/healthy eating crusader, as well as a believer that food will cure all. Well, I'm not - not really.

...Although there IS my constant threat/dream to start a demonstration in front of every supermarket in the US with young women, mothers, grandmothers of the world united, carrying placards that declared that 95% of the food in said stores is dangerous to our health.  Hugely dangerous!  But I'm coming perilously close to digressing, and that's for another post, so on with it!  

I'm always amazed at how much healthier I feel after I've been eating well.  Actually, perhaps not "healthy," but instead how much cruddier I feel after eating "well" for a while, then sneaking in one of my "forbidden" foods and suddenly feeling incredibly worse...migraines, brain fog, huge pain, and the myriad of other symptoms and problems which then come out in spades and/or are intensified.  

I suppose the first time I really and truly noticed this was back in the early '90's.  I'd gone on a diet determined to lose the fat and poundage I'd put on after seeing a CFIDS specialist (one of a few already and one of many to come) who thought regular steroids would be the answer.  I'd made peace with the decision and since I was already bathed, dressed, made up and out of bed, hubby and I decided to stop by a department store on our trip home in order to buy some clothes that would fit me once I put on the inevitable at-the-very-least 20-pound weight gain I have always gotten from just one shot of steroids, as in the occasional bout with poison ivy or other nasty thing deserving steroids.  

Well, to make a long story short, my CFIDS, ME/CFS, fibromyalgia, migraines, insomnia, and so forth, symptoms got no better.  In fact, I would say that they got much worse.  And I did not have a 20-pound gain but a 40-plus pound weight gain.  Putting on all that weigh made it even harder to move around, the pain got much worse.  The migraines were so bad, in fact, that I was in the ER just about every week.  

In those days, the "best" treatment for migraines was a DHE-45 IV drip in the ER which took a couple of hours to administer.  It worked like a charm but was a pain because I have a phobia of needles and a good "stick" is hard to find.  But the ER docs got to the point where they could take one look at me, talk to hubby and immediately see if a quick Demerol shot would work or if I needed the dreaded DHE-45 infusion.  

I thought my migraines would be a cinch to deal with once Imitrex came out, in shot form.  Holy cow, was I ever wrong.  The migraine would go into stratospheric heights and knowing I sounded very crazy I nevertheless couldn't stop screaming from the worsening migraine that the Imitrex induced.  Then after about 6-8 hours, if I were lucky, the migraine would magically go away.  Too often, however, the migraine did not go away and I'd need a second shot, screaming, sweating, shaking, trembling...it was a sight out of "The Exorcist," minus the head turning. 

Back in the late '80's, the migraines had become so bad that my first lumbar puncture was done.  When elevated proteins were found in my spinal fluid, everyone scrambled about getting me scheduled for a CT scan, others were trying to figure out who would be doing a removal of my brain tumor because that's what an elevated protein level in the spinal fluid meant back then, whereas hubby worried how he'd miss his young wife and how he'd manage life with three little children who had no mother.  It was a scary 24 hours until everyone found out that there was, indeed, no tumor in my brain.  

On the other hand, when I was lucid enough to think, I was furious with everyone. I didn't have a diagnosis yet as to what was wrong with me, but I KNEW that something serious was going on.  How was it, I wondered, that the elevated spinal fluid would scare the heck out of doctors one day and not be a sign of anything wrong the next? Come on guys, use the brain God gave you, the logic college taught you, and the physician's training medical school gave you.  There IS some sort of problem.  It's not just a yes or a no!  

But everyone was happy, other than me, of course.  That was the infamous year when I spent more days in the hospital than at home, popping in and out of hospitals as if they were my home away from home.  Hospital dietitians particularly got on my nerves because they kept trying to trick me into diets I'd long ago surmised did not influence my health.  I'm sure there are exceptions to the rule, but one the whole, I've found that most hospital dietitians are the most ignorant group on God's good earth when it comes to food.  Think about hospital food for a moment and you'll understand what I mean.  

At any rate, getting back to the steroid fiasco, I stopped the shots and was determined to lose the 40 pounds I'd put on, not an easy feat.  For some reason, regular weight goes off rather well with determination, but steroid weight gain is almost an impossibility to get off.  It takes me at least a couple of YEARS to budge even 20 pounds.

But I heard about a new diet on one of those evening magazine shows and decided I had nothing to lose but weight, so why not try it?  

It was called "The Monignac Diet," "invented" by a Frenchman who worked in the US for an extended period of time, had a history of extra poundage he wanted to lose, and was horrified by French young ladies who spent time in the US and came home fat.  Nutritionists and dietitians around the world were divided on the efficacy of the diet, most very much against this new-fangled concept of a glycemic index, but given my opinion of nutritionists and dietitians, I thought that was reason enough to try it.  

The diet basically divided meals into ones which were fat/protein or carbs.  Never could the two groups meet. Furthermore, carbs were divided into "good" carbs and "bad" carbs.  There were also some "no-no's," such as sugar, corn products, potatoes (a killer for me since I consider potatoes "Russian/Ukrainian penicillin").  This is all a simplistic explanation, of course.  This was also my first venture into the low-glycemic world.  In fact, Montignac is now, after his death, known as the "father" of the glycemic approach to diet, eating, weight gain/loss, health and so forth.

Well, it was a surprisingly easy diet to stay on.  I lost 20 pounds but then hit a plateau - a plateau I could not for the life of me get myself off of.  

One night, complaining about the darn plateau, observant hubby suddenly said, "you know, you haven't had a migraine since you started that French diet."  I looked at him as if he'd suddenly grown a monstrous second head but I often give him that sort of look.  

"Think about it," he said.  This time he got a dirty look.  One of my hobbies is thinking...was he actually telling me to think when he's always telling me to think LESS???

Suddenly I jumped out of bed and ran to the dresser where we kept all of my migraine meds, including the dreaded needles.  My supply of needles looked full.  I checked the date on the Imitrex - and it was expired.  WAY expired!  I looked at the rest of my migraine arsenal and everything was old. 

This was way too easy.  Hubby said, "I think you may have lost only 20 pounds but more importantly, you lost your migraines too."  That was such a corny statement that he got another, deserved, "look" from me.

Not wanting to leave things well enough alone and being a contrarian, or just a person who likes proof, I looked at him devilishly and said, "I want a burger."  You see, bread, a carb, and beef, fat/protein, mixed together were a definite no-no.  Hubby looked at me as if I were nuts but knew arguing would do no good.  I finally ate my hamburger with extreme relish and got my migraine, in spades.  Too bad I hadn't planned things out: the migraine was one of my better ones and because the meds at home were all expired, a run to the ER was needed.

It took me some time to accept the reality that I had hit a cure for my migraines.  This was really huge.  As a child I got bad headaches but my mom believed that children don't get headaches, they just caused them - in adults!  I learned great coping mechanisms, one of which was washing floors, de-waxing and waxing floors on my hands and knees whenever I had a "headache" coming on.  I didn't even realize I was doing this but always had incredibly sparkling floors. 

All of this denial came to an end, however, when I went blind in one eye for a few days while in my second pregnancy. It was a migraine equivalent seen at times with women who suffer severe migraines.  I argued with my neuro-opthomologist that I don't even get mild headaches when my hubby came out a state of shock and said, "You ALWAYS get headaches!" Was I complaining but not hearing nor registering those complaints? 

After challenging the "French Diet" a few times, I realized that for me, at least, this was one answer to my migraine problem.  I've had good years and bad years as to how well I stick to this way of eating.  At the moment I'm not doing too well because of too many reasons to bore you with at the moment.  

But how incredible was the luck that led us to this "cure"?  Had we not been using needles back then and had Imetrix not intensified my headaches before ridding me of them, the connection might not have been made. Today, with a medication in pill form that works like a charm, I'm not as invested about avoiding the foods and eating patterns that lead to a migraine.  Pop that pill and forget about what harm I may be causing myself due to side-effects not even yet imagined.  However, now that I've put this in writing and told so many about it, perhaps I've finally given myself the push I need to get back on the French diet band wagon.  

Goodbye to my wonderful potatoes, my wonderful Russian/Ukie cure-all for a while.  Perhaps I'll have some mashed ones tonight as a farewell, right before I have a piece of sugar-laden cake for my wonderful daughter's birthday.  It's tough to say goodbye to those "poisons."