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.


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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 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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The Hunger Games and Christmas Survival

A bit of the insanity of taking three little ones to visit a Santa display.....I'm not really as jaded as I sound! 

It's now officially that time of year again. It's finally December, the month I dread most. Why, you may ask?  

Well, I've long said that I think Christmas should be celebrated only every four years, like the Olympics.  After all, getting though the holidays is truly worthy of an Olympic event.  Your need of stamina is the least of the problems.  Remembering who should get gifts is the least of them as well.  

Anyhoo... that's the inside-my-head thing for the day!  I'm not proud of this feeling, I must admit.  However, it is what it is.  Truly, I must not be the ONLY person out there who feels this way all too often?  Does the word "humbug" ring a bell?  ;) 

It's been an unusual couple of days in a very nice way.  I'd realized that I'm probably one of very few who hadn't seen The Hunger Games - the original version - and  with all the press for the new installment of the planned trilogy, I suddenly started wondering if I was missing a huge global event, common to all.  I was suddenly reminded of the summer in camp when I (and my fellow campers) must have been the few in the world to have missed the moon landing.  To put me out of my misery (read: family feeling sorry for me because I'd just gotten home from the hospital) the movie appeared in my player. (Imagine the curses as I tried to figure out the newfangled system that I have yet to master, despite daughter-who-is-pitying-me trying to wrestle with the contraption.)  

Let me just say that to me (jaded soul that I am), the holidays also mean some pretty cruddy TV and so I realized that if I want to survive the holidays with any sort of sanity at all, I'll need to figure out how to watch movies on my "favorite mobile devices."  Yikes!  Seeing those words, "favorite mobile devices" put a chill through my body as I read this new way of watching movies.  But I've never cared for holiday specials which I find infinitely boring.  And I resent the fact that our favorite shows are held up.  Um ... Scandal anyone? Love, love, love the show.  (And the last few episodes have been fantastic!)

Back to topic at hand: I really loved The Hunger Games!  Yay!  (Daughter in the background finally said, "Exactly HOW long has it been since you've seen a movie?" getting a bit weary at all my oohing and ahhing.) The costumes were incredible.  Makeup: wow! The premise was gruesome, yes, but fascinating.  There's so much attention to detail.  I was hooked, right from the first moment.  The only thing that took me out of that world were thoughts where I wondered how a certain thing came to be, how it was treated in the book I'd yet to read.

And thus, a first-time experience: every five minutes or so I couldn't stop wondering what the full story was about this character or that, why life became the way it had.  I couldn't wait to read the novel.  Normally, I read a book and a couple of years later see the movie and, of course, I'm disappointed.  Or, if I see a movie first and then read the book, I wonder why the book had all this unnecessary information, background, plots. Too much clutter.

Thanks to Kindle I started reading the first of The Hunger Game series almost immediately and am now about two thirds of the way through the first book.  Yes, fascinating!  But I've gone a step beyond.  Suddenly I find myself putting down the "book" (it IS on Kindle so it feels funny calling it a "book") and watching the movie to the point where I am in the novel.  Bliss!  This is the first time I've ever "savored" a book, like hubs has a tendency to do.  Normally, I rip through books - especially since good old ME/CFS and fibromyalgia don't allow me to retain much and if I don't get a book down in one fell swoop, by the next day it is completely gone.  But with Hunger Games, I go back and try to figure out a scenario that fits the movie, book and my imagination until I'm in a good and satisfied place.

What's even better is that despite fibro-brain, I can understand all.  It's a young adult novel but I don't feel being catered to, being talked down to.  It may be in the same league as Ann Benson's novels, most especially The Plague Tales (taking place in the past as well as the future).  I've not read Margaret Atwood's The Handmaid's Tale in ages, nor Marge Piercy's He, She and It  but I'm truly enjoying this first book of The Hunger Games and am not sure the aforementioned books are too far superior.  There are so many layers to the book as well as the movie.  Yes, I'm jaded when I hear about "coming of age" books but the moral issues here alone keep me turning things around in my head.  I guess you could say I'm interested in the "coulda, woulda, shoulda."

For anyone who wants/needs another few recommendations to escape the holiday madness, I also recommend The Outlander series by Diana Gabaldo about a time traveler between now and the 18th century.  Just the medicine aspect kept me fascinated.  I made the mistake of bringing one of the books on vacation with me - and had to end the book before I'd go to see any of the sites I'd so looked forward to.

I'm not really a reader of science fiction but these books really do capture the imagination.  You might just thank me for these titles when TV is running the upteenth Christmas showing of Peanuts and/or the Muppets. And now, back to disappearing into the Games and avoiding the holiday madness for another few days! 

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


Note: Sorry, I had the wrong link to Ann Benson's The Plague Tales. It's been corrected. Thanks! 


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Checking In & Updates

HELP!

A very quick "hi" since I feel I'm neglecting quite a few friends out there.  Oh good grief, I've taken my night meds so I really shouldn't be writing.  I KNOW I'll regret it in the morning.  I'll be upset and think, "your brain told you not to go there! Why did you do it?"  Well, it seemed like a good thing at the time - that'll be my answer to myself and hopefully things won't be too bad.  (Right! Huh!)

Also, I'm beginning to realize my posts don't need to be earth-shattering info all the time (took me long enough!), that I don't need to cram every thought I've had into one long reading, and furthermore, that they do not all need to have a huge purpose with life lessons thrown in.  In other words, I guess I need to loosen up.  Just one problem: I'm not a person who can loosen up, ever, much as I've always tried!  Ask my family. Ask anyone who's ever worked on me from doctors to masseuses to phlebotomists to those who know me well. It just doesn't happen.

But to catch up those who aren't on Twitter, you've sort of missed a few "adventures" of this spoonie who is really getting ticked off with the complications from ME/CFIDS/CFS and fibromyalgia.  Last we "spoke" I'd finally had "the works" done (hair, lashes, brows). Unfortunately, I had to stop by one of our local hospitals for an X-ray after our big day out in order to see what's going on with the painful and limited motion in my left shoulder. Turns out that I'd somehow managed to mess up my rotator cuff.   (See this link for more on what great things happened that day!)

I'm hoping to bring us up to date because it's another thing I can laugh about...well, sorta.  But there are a whole bunch of things I'd like to talk about so let's pretend this is a "Friday Tidbits" with bullet points.  I'm going to tease you a bit.  These bullet points will serve as a reminder of what I want to talk about this week. Yes, folks, I'm going to try mighty hard to get back to posting on a more regular and frequent basis.  I must get away from the getting sick and hospitalized thing.  Uhhhhh..... My plan - the stories behind the following:

• Yes, ladies and gents, you may have realized why I'd gone MIA again.  It was yet another hospitalization!  
  As I laid in pain, nauseated, I have to admit that shallow me was ever so thrilled that I happened to take a bath and wash my hair before we made the ER run.  More on this later - both medical issues and "shallow" ones as well.  In fact, I did manage a very rudimentary mani while in the hospital.  More on this later. Standards must be kept!
• MY new theories about what's going on.  Well, perhaps not what is going on, but a possibility of why it's going on....
• And how could we have Thanksgiving without my addressing food?  There's a lot here.  Also, if I can get my act together I'd also like to occasionally give you a few recipes or food ideas which keep me going.  I don't know about you, but I can never decide what I want to eat, if I should eat and so forth. So, recipes and ideas, might be coming down the pike.
• I've a few more ideas for what to add to your prepared hospital (or travel) bag.  I realized I needed these additions the hard way.  
• What have I been reading?  Not much, mind you, but I'm enjoying what I've discovered.
• I can't believe I'm going to say this but...for the first time since I was a elementary school girl, I'm going to make a few real thought-out New Year resolutions. (I can't wait to see the backside of 2013!)  Instead of just grabbing the first couple of ideas that pop into my head at the last minute, I'm going to give this some real thought.  I think I have one badly needed resolution figured out which will help others.  We can even egg each other on support each other with this.
• Making a list of what makes me happy and puts me in a good mood - and why I need this list.  (It's a must!)
• Making a list of what makes me sad and really impatient and puts me in a most rotten mood. (It's also a must!)
• Why I need to work hard on making changes which will put me in a mood light enough to really have no problems saying things which I'm grateful for at next year's Thanksgiving table.  I know.  I hate to sound ungrateful but I'm putting this in at the moment because I know that there are too many of us out there who have problems coping with the holidays - and I wouldn't want anyone to think that they're alone in the not greatest of mood mode!  (Experience here!)

These are just a few of the topics I hope to discuss in the next few days/weeks.  Some have to do with the hospitalizations (the one this week and the one just prior) and the bit of brainwashing that goes on.  Or as I like to call it, "propaganda." 

I'm praying that my health allows me to follow through with that which I want to do. Following through and staying busy in general: now THAT always puts me in the best of moods! 

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


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Shallow Me?

I'm not as bad as some members of my family!  My son getting a pedicure by way of fish in Southeast Asia, on holiday with his wife. 

We've been oh-so-serious here lately and I thought, it's definitely time to lighten things up a bit.  And so I have a have a confession to make.

I am a shallow person.  Yep, it's true.  I really and truly am.  I cannot handle having someone see me at my worst.  These things really bother me.

When I was in the hospital writhing in pain, as a doctor or nurse would examine me, all I could think about was how bad was my breath, when was the last time I'd had my hair cut, dyed, highlighted and low-lighted? How much were my age spots showing?  How bad did my armpits smell?  I think I realized I was totally nuts when one day my GI was upset about how distended my stomach was and I suddenly remembered that I had scars there from my gallbladder surgery last year, laparoscopically, and wondered if my surgeon (aka "Dr. Hunk") had had a chance to admire his work.  Call me silly, but I think he could care less about the scars.  But as the GI guy was worried about my distended stomach I was glad I'd lost my Cymbalta weight and that the belly wasn't as fat as it had been just a couple of months ago.

So it wasn't a huge surprise that when I got home I immediately went to work on hubs trying to get him to see why things couldn't go on like they had been: I was in dire need of getting fixed up.  I needed to get the eyelashes colored again, the brows dyed, the hair done, pronto.  Worse, I realized that I had many doctors appointments scheduled and doing all that work to look human as I'd get ready for an appointment was just too much.  I couldn't even begin to figure out where my eyebrows were in order to color them in, just an example.  My hair, so thin and getting thinner by the day, needed rollers to give it some umph if I were going out of the house and that's just too much work.

So, we finally made the big appointment.  I go to a large city for my works, a bit over an hour's drive and way too much construction and traffic to deal with.  I woke up ill that morning, running a bit of a fever but I realized that the appointments would only be postponed, not cancelled indefinitely.  And, I realized that the reason so many months had gone by since my last appointment was because I'm always getting sick or am sick or getting over being sick.  It was time to bite the bullet and just do it.   No matter what, I wouldn't find a good day and each day that passed I was looking worse.  

Nope.  Hubs wasn't going to talk me out of it.  I was strong and I could handle it.  Hubs gave in, realizing I was impossible.  He finally said the words I've waited to hear for over ten years, never thinking I'd hear them. It was, hubs said, time to find someone who could tattoo my eyebrows in.  I pushed the envelope and added, "and eyeliner too!"  He nodded.  So, now if only I can stay 'healthy" long enough, I need to find a good, reputable tattoo artist.  We are talking about the face, after all....and the eyes too.  That's prime real estate, let's remember.  We do not want the word "whoops!" coming out of anyone's month.

Now I need to explain something: just how much I loathe getting my hair done.  I would rather have a root canal.  I would rather have surgery.  A hysterectomy is preferable to getting my hair done - and I've had one of those so I know what I'm talking about!  Those of you fortunate enough to have hair will never understand this feeling.  My hair is definitely my Achilles'  heel.  There has always been so little of it.  Bad enough that my mom, my daughter and my BFF all have enough hair to fill up five women's heads each. Now with the hypothyroidism, I have less than even my usual.  I've seriously considered just going bald, getting it just shaved.

OK...you get the idea...I think.

So, after getting everything done we were on our way home.  For once I didn't try to con hubs into a bit of a shopping trip.  In fact, when we hit the elevator button, I was so "tired" that I just sat down on the floor.  I could care less how it looked. Manners?  Who cared?!

We got to the car and I couldn't believe it.  My left arm couldn't bend to buckle the two metals parts of the seat belts together and after hubs did it for me, the shoulder wouldn't stop hurting, and a lot. I finally told hubs that once we got to our town, we'd need to stop at the ER before going home.  By the time we reached the parking lot of the ER, I was holding back tears.  I'd taken pain meds and they weren't helping.

To make a long story short(er)... The kind doctor who had admitted me to the hospital last time I was there came in.  In all the madness when I wrote my last few posts, I forgot to mention that we did finally get a good doctor--- after I was horrified to see "Dr. Dear" of the infamous pancreatitis fiasco had come into the room. He had turned around and left and the charge nurse (who knew hubs) got a very good doctor to come in.  She was worried that we wouldn't like his ponytail.  

Was she insane?  Worse, did she think WE were insane and unreasonable?  Not that it mattered, but I loved the ponytail.  It showed that he didn't care what bureaucrats thought...  We hoped it meant that he only cared about medical care.  Not only that, but that probably meant that he remembered the Vietnam War.  

You must read my post (please!) where I explain why our new doctors are, frankly, so cr*ppy.  Oh come on.... I could care less about lawsuits anymore from anything I say, especially since I know that I speak the truth and I do not exaggerate.  My new mantra is, I want them - the robots and unenlightened - to fear ME.  No, I don't want to antagonize, but I've finally had it with the bullying and the incompetence.  I am ticked off, big time, and I'm not taking it anymore.  You  are nice to them and they walk over you, taking you for a weakling.  I'm not going there anymore.  And I have yet to write about the bully nurse, a huge story.  

So, Dr. NicePonytail immediately realized what I had suspected.  I didn't know what a "rotator cuff" was but those words just kept popping into my head during our drive home. It just sounded right and felt right.

Now I'd had pain in that shoulder for weeks but we all thought it was referred pain from the pancreatitis.  But that morning as I was getting ready for my "beauty day," I felt that arm pop. I said nothing.  It was minimal in the scheme of things.

But now it was screaming.  Furthermore, my BP had broken a record.  They got another machine, not believing the reading.  My usual 90/65-70 was a whopping 190/101.  Ah... how I love the BP.  It my "tell" to me of how I'm doing.

The good news is that I do not need surgery.  The bad news is that I need to keep my arm in a sling for a few days and then will need physical therapy.  The danger is a "frozen shoulder" if I don't do things right.

Now, how was my "vanity issue" in the ER?  You'd think good, given what I'd done all day. But, my lovelies, how you'd be so wrong!  I was explaining to anyone who'd listen just why my brows looked so...well, Groucho. Some of the dye was imbedded in the skin, a usual thing that goes away in a couple of days.  Of course I always need a few days to get used to the color and cut of my hair.  There was a bit of dark color under my eyes I couldn't disguise, from the lash coloring....

I can't win, can I?

But there is wonderful news.  The gift of laughter I've always taken for granted and was so afraid was gone permanently, as a result of the Cymbalta fiasco, has returned.  If the run to the ER with the arm didn't make me laugh at my luck nothing would bring it back.  So I am happy that this arm did this little trick.  I may feel differently if it doesn't heal right, but for now I'm thrilled I have something absurd to laugh at.

As to the shallowness of my being?  I'm not sure that is curable!  It was honestly inherited from my mom and if nothing else, I am my mother's daughter.

And on that note, I say my usual.  I hope everyone is feeling their very best, only better. Ciao and paka! 



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Explanations & Understatements

Food, Glorious Food! 

This is a very hard post for me to write.  I've agonized as to whether I should write about what went on in the hospital - all due to the embarrassment factor, an understatement if ever there was one.  Were I anonymous I probably wouldn't hesitate to write about the saga, but there are personal friends here and it's quite embarrassing to write about my latest hospitalization.  On the other hand, I keep thinking that what happened to me could very well happen to someone else out there, especially those with CFIDS/ME/CFS and fibromyalgia. I came close to a fatal situation, one I'd never encountered before - and we know how many near-fatal situations I've been in!  *Sigh*

I've also put off writing because there is so much to understand/tell.  I'm still processing things after all.  But I see that with each passing day things get more complex so I just need to bite the proverbial bullet and get on with it, especially since I've heard from so many of my readers wanting to know where I've disappeared to, what's happened to me, and so forth.  Boy do you guys make a "girl" feel good!  Thanks! 

OK... A scorecard and Cliff Notes rehash (which are discussed in more detail here, here and here):

• I had three ER runs within a little over a week and each time I was sent home, even when I was diagnosed with pancreatitis. (here)
• Hubs had to use connections to get me admitted on ER run #4.  I had refused to go to the ER a fourth time. Some may remember that I felt going to the ER again would be tantamount to the medical version of "suicide by cop," in my case "suicide by ER," but hubs refused to listen. Things were reaching the fatal stage.
• Things had become so complicated by ER run #4 that diagnoses were being changed almost hour by hour.

And oh how dangerous things became!

I ended up spending ten days in the hospital, quite the feat!  Might I remind you how difficult it is to be admitted to a hospital at all these days?  (A post on that subject in the near future.  This is a dangerous trend and effects every one of us - healthy or unhealthy.  After all, sooner or later, everyone will end up needing some sort of medical care, no matter how blessedly healthy they are now.)

Doctors employed by hospitals (as opposed to being in a solo practice or even a group practice) will do almost anything to keep you out, much of it thanks to our insurance companies having so much control over our care. (Dirty secrets to be revealed in a future post.)  That I spent so many days in the hospital shows the severity of how ill I was, if nothing else.

To say what I went through was painful is a gross understatement.  Luckily, once I was admitted, the hospital staff on the floor was fantastic.  I was given my pain and nausea meds on time, for example, a HUGE plus. To say that I literally felt as if I was in labor for the first nine days is yet another understatement.

Worse, saying that I was in a very "fragile" state is an understatement.  I hadn't eaten in almost 12 weeks by then if my math is right (link).  I got to the point where drinking a sip of water to take my medicine was almost impossibly painful.  I would shake and shiver fiercely all the time, a truly awful feeling.  Between that and abdominal pain where I felt as if my guts were being torn inside out, along with the nausea, the migraines, the chest pain and a host of other problems, jumping off the balcony was starting to look like a pretty good thing to do! (Joke?)

With the ER #4 run, I knew I would most likely have to get an NG (nasogastric) tube.  To say that I ended up having a love/hate relationship with the tube is --- you guessed it: an understatement.  Yes, it was really gross to have that tube go into my nose down to my stomach but it allowed me to breathe, a luxury by now. How sick was I you ask? (Pretend you asked: makes me feel better! ;))  The tube went down in one go, an unusual thing, according to my docs.  Let's just say I was highly motivated to have that sucker go in right the first time.  The thought that five attempts is not that unusual was not something I've ever put on my bucket list.  (Heck....even one attempt of putting a tube in was never on any bucket list!)

The funny part?  I was dreading having that monstrosity in me for 24 hours: understatement.  Huh!  I should have been so lucky.  But sometimes naivete is a really good thing.  That sucker was in for eight days. However, by this point I was so sick that not only was the pancreatitis a mere annoyance but that tube was slowly becoming a great friend.  Don't ever underestimate the wonderfulness of breathing! ;)

The most frightening thing of this whole situation is that we have no idea why I ended up where I did. (Yep: understatement!)  This is the scary part because how can I keep this fluke from being repeated?

We still have no diagnosis of what's happening to my digestive system.  I'm still too ill for a colonoscopy, though hopefully I will be able to have it done soon.

OK, OK, OK!  So what did happen?  What was the matter?  Enough stalling!  But I'm doing this only for those of us who have IBS (Irritable Bowel Syndrome) and/or IBD (Inflammatory Bowel Disease).

Simply put I was impacted - from the very top to the very bottom, all cemented.  Yes, I had pancreatitis but that was treated with heavy doses of antibiotic added to my IV bag once I was admitted.  They had to blast me for over a week to get me back to MY normal - my body was just not letting things go!  Laxative and enemas were done over and over again.  We all feared that surgery would be needed.  

How desperate was I?  I not only wore my cross (which I got out of the habit of wearing when the kids were babies and would try to pull it off) but I even got out my late mother-in-law's rosary - and hung it around my neck because I was so afraid of losing it.  Oh yeah...  *I* looked normal!  And to add to the "lunatic" thing, remember, I'm not even Catholic!

I prayed like almost never in my life before.  With the addition of prayers from so many of my friends (near and far, in the States, Canada, Great Britain and even Russia) it must have worked!  You, my readers, long-time friends, new friends and my twitter friends, Facebook friends prayed and helped hold me together.  For a few days my doctors were convinced that I had either Crohn's or Ulcerative Colitis and were readying me for a transfer to a "major medical center" ranked #2 in the country for digestive disorders, pretty darn sure I'd need surgery.  I'm convince that all those prayers helped to get me out of THAT pickle.  Thank you all, so very, very much!

By the time I had some action going on, it felt as if the walls of my colon and intestines were being ripped apart: the stuff was sweeping out and even getting unglued from the walls, which REALLY hurt. Thankfully, these worst days kicked in during the weekend and hubs was able to be there with me as I slowly started going insane from the pain.  I kept thinking, "how can things keep getting more painful?  What is the maximum? Surely I've reached it."  Nope: just as in life things can always get worse, so too can pain get worse and worse and worse as well....

Once on the floor, my doctors and nurses were horrified by what was happening to me, not to mention being disgusted, and worse, by what happened in the ER.  I was definitely a challenge and the diagnoses were changed every day, sometimes twice a day.  Testing was constant. 

My surgeon (the admitting physician) always had a worried look on his face.  Can I say that I love the guy? He's the one who did my gall bladder surgery and so knew that I had a high threshold for pain.  He worried and worried about what was happening to me.  One nurse said she was sure he was staying up till the wee hours in the night reading all he could to get a better handle on what to do for me - I think only half jokingly. Were it not for the insurance company saying I had to go home, he might have kept me longer.  (I was out of immediate danger and he made it very clear that if I had the slightest problem, I was to return immediately to the hospital.)  He is convinced that there is something really bad and weird going on and I trust his guts - he has a great record.  He's also convinced that I had colitis of some sort in this mess and really wants to get to the bottom of all this.

My GI would have a worried look on his face as well.  He's still not sure what the heck has happened, only saying, "I've never seen anything THIS bad!" and he's been a practicing GI for over 30 years.  He'd say this every single day and then give his trademark stare to make sure you understood what he just said was exceptionally important.

I can't begin to explain how much the kindnesses of the staff was needed and appreciated. I loved the fact that the nurses were on 12-hour shifts and I had the same morning and night nurses for the most part.  They got to know me well and I got to know them.  They knew that if I said I was in a lot of pain, I really WAS in a lot of pain and tried to help as much as possible until my pain or nausea meds could be given.  And the fact that we had little jokes going on - well, that made for an almost impossible situation seem easier to handle. So kudos to the staff.  (And I have to say Knock on Wood and Tphoo! Tphoo! Tphoo!  With the rate I've been going to hospitals I can't risk any jinxing whatsoever!)

After all is said and done, I get very upset when I think how close I was to death because of the incompetent ER.  I did everything right.  I didn't go to the ER for frivolous matters. I followed doctor's orders.  Tests showed that I had problems.  Yet it took four ER runs before I finally got admitted and basically only because hubs demanded - in a calm, polite but determined way - that I be admitted.  Furthermore, the hospitalization was done because hubs had connections to get me in.  What if I didn't have a husband who had no means to get me admitted?  I get even more upset when I wonder how those without advocates (friends or family members) go alone to ER's and hospitals and how they are treated. 

The most frightening thing of this whole situation is that we have no idea why I ended up where I did. (Yep: another understatement!)  This is the scary part because how can I avoid this "fluke" from being repeated?

We still have no diagnosis of what's happening to my digestive system.  I'm still too ill for a colonoscopy but as I wrote above, hopefully I'll be up for it soon.  I am scheduled to see my GI later today.  I hope we can figure things out.  But to tell you the truth, I'm not sure anything will really be resolved/figured out.  It's all too complicated and everything is so overlapped.  I have problems with too many systems - immunological, neurological, endocrinological, just three examples - going awry.

But there is one thing that I did love about my hospitalization.  Not once were the words "Chronic Fatigue Syndrome" or "ME" mentioned, nor "fibromyalgia."  I was treated like the "real" patient I am.  Not once did my doctors blame weird things on my CFS/FM and try to dismissively throw everything into the wastebaskets too many others try to use.

That was worth its weight in gold.

So, why rehash my adventures, even though much has been left out for brevity's sake - and also to put my dear readers out of their misery and end this as quickly as possible? Why expose this embarrassing problem? Because bowel problems are more common than we are lead to believe.  Because bowel problems can be fatal. I, never in my wildest dreams, could have imagined my scenario.  Of course, neither could my doctors!  When I told hubs that my surgeon, "Dr. Hunk," said, "you are a VERY complicated lady!" hubs started laughing almost hysterically (understatement)  ... certainly hard enough to almost fall off his chair onto the floor.

And there is a final take-home lesson, if I may say without sounding too bossy or know-it-all: persistence.  If you feel something is off, trust your instincts and do not accept bullying (more on that too!) nor allow any health professional minimize a problem.  Death, after all, is not a good thing: understatement.

And on that note, I stop.  Heaven knows I hope I've made sense here.  I'm still in the really bad pain area.  As always, I hope everyone's doing their very best - only better! Ciao and paka. 



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