About Me

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

Sunday, December 1, 2013

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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Saturday, November 30, 2013

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.


(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!)



Wednesday, November 20, 2013

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! 



(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!)



Tuesday, November 19, 2013

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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Sunday, October 27, 2013

The Latest....


Worried: I dare not put up the pictures taken in the hospital... call me gutless! 


A very quick note to say that things are moving along quickly.  The latest appears to be that the sigmoid volvulus is old news, now discarded as a problem.  No, the latest is that I appear to have Inflammatory Bowel Disease (IBD), not to be confused with the usual Irritable Bowl Syndrome (IBS) which is so often seen in those with CFIDS/ME/CFS and fibromyalgia.  IBD is a most unpleasant animal, to put it mildly.

I'm still in the hospital and things are jumping.  I have a tube that, on Friday, was inserted down my nose right to the stomach.  It's still there.  Tomorrow I was supposed to have a colonoscopy but it appears that I'm too weak for that at the moment.  A diagnosis needs to be made and so only a sigmoidoscopy will be done.  "We" will be looking to see if it's Crohn's Disease or Ulcerative Colitis.  Other info will be gathered, I'm sure, but to tell you the truth, I'm just taking all of this minute-by-minute.

In my better moments I know I'll deal with things because there is no choice.  In my sadder and more exhausted moments I am scared and very fed up with all the health issues.  I am out of my comfort zone in so many ways.

When the pity party is over, I try to be mature and tell myself that there are so many out there who are in much worse straits than I'm in and they are happy for each moment in their lives.  Let's just say that I am mature in years, but that's just about where my maturity ends.

My pain IS being managed. That's a plus at this point.

The diagnosis may also dictate where most of my healthcare will be done: here, locally, or at a large medical center.  I'm not even thinking about this aspect at the moment.

I AM, however, trying to figure out why I've lost all that info that usually sits on the right hand of this blog. Where is it???  I tell you, it's the formatting that gives me the most problems and the blog will the death of me yet.

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



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Saturday, October 26, 2013

Pancreatitis or Red Herring?


Another fun day at our home!  It appears that I have one good diagnosis that may answer a lot of things going on... finally!  I've been admitted to the hospital and if things go well, we might even be able to put together a plan. 

Thank goodness that the ER doc who finally saw me felt that things were not what they seemed, that things were a bit off with the pancreatitis diagnosis. GOOD! FINALLY!  A THINKING doctor!

lt appears that I have volvulus of the sigmoid colon. The other things, including the pancreatitis, appear to have been red herrings.  I can't believe this and yet I'm not at all surprised. 

I hope you can "forgive" my quickly put-together info but I'm not at my best.  I'm worn out, depleted, with a head that's swimming.  But for four days, I've not eaten in close to 10 weeks now.  Furthermore, things may still change, things are still being investigated, but there is a bit of hope that this latest mess might finally be addressed. 

I've not done my research about this, so please just keep in mind that this is all "hot off the presses" and things may yet change.  And since I'm in a hospital bed, I'm using my iPad to write this up, so formatting, etc will be a problem.  Anyway....

This volvulus could have developed into a ischemia bowel, where the bowel dies and a colostomy is then done. I admit that I did a bit of crying when they put the tube into my nose down to the lowest part of the colon (way low) because it was and is just so gross, disgusting.  Word is that it'll have to stay in for 24 hrs, approximately. There's a lot of stuff coming up, the bile, gases, a quart-full now, and "they're" amazed at the amount. 

Who died of this, the twisted bowel?  One of the BeeGees, Maurice, if I'm not mistaken.  I remember because it was so terrifying to hear that this sort of thing can happened.

As mentioned above, the pancreatitis was a red herring, according to the doctor who I ended up with.  He just got a feeling that something else was going on.  I felt better from just hearing the expression "red herrings."  I don't know if anyone remembers that a year ago I wrote that I felt all the problems going on were red herrings, masking the real "new, major" problem, and that I was on "The Hunt for Red October."  No one knows what exactly is happening, however.  Hopefully, more answers if/when my gastroenterologist comes by, as well as "Dr.Hunk," the surgeon who did my gallbladder surgery last year.

When hubs walked into the house earlier today (that is, Friday, having not had sleep I feel as if we're still in Friday) and saw me, he immediately said, "ER, NOW!"  

I cried hard because it hurt to move at all and I had to walk downstairs, plus get into the car.  I was not about to call an ambulance as Friday night's entertainment for Dimmeydale, our neighborhood. On the way to the hospital I cried because I was so afraid of getting a tube stuck into my nose down to the nether regions I know nothing about nor care to learn about... I have enough to figure out with the darn CFIDS/ME/CFS and fibro.  I was also so afraid I'd get "Dr. Dear."  I did.  Of course.

Hubs sort of recognized him but wasn't sure if it was from one of my past visits or one who had treated our daughter.  It came out of my mouth, before I could stop my words, "oh no, Dr. Dear!"  

He recognized me, and, thankfully, turned around to leave.  At the door he said something I'd not heard or have forgotten, but ended it with, "DEAR," getting "back" at me.I very much wanted to ask him if he felt like a 3rd grade bully in a school's playground. (During my last fiasco of the run to ER I couldn't stand his condescending attitude and finally asked him to stop calling me "dear" at the end of each sentence, that my name was Mrs. BlahBlahBlah.) This was the genius who told me that my pancreatitis was just like a bit of a mild flu, sending me home with no medications, no eating instructions, not even giving VERY dehydrated me a saline bag....

Anyway, hubs had to phone the administer-on-call to complain that 2.5 hours had gone by and I hadn't been seen by a doctor.  No saline, no pain meds, no drinking liquids, no nausea med, NOTHING.  No one would give hubs the administrator's name or phone number but with a few phone calls he had the info. The guy was furious and wanted to know how hubs got his name and number - as if hubs was going to squeal on someone and get that person in trouble.  You could tell that that spouse of mine was very respectfully yet firmly, blowing the administer-on-call to smithereens, so much so that the guy hung up on him!  Hubs called him again and the guy wouldn't pick up the phone.  He wouldn't pick up when hubs called on my phone either. I will say no more....

For many reasons, the charge nurse knew of my hubs, for good reasons, nothing sinister.  She was quite helpful. My main nurse was helpful, as well as my "other" nurse. 

Funny: both of the CT Scan technicians remembered me from a few other visits. I was so sick then that my savant-like facial recognition abilities failed. I couldn't remember them at all, nor the ER visit, though I did find that I've posted about it!  But as one was rolling my bed back to my cubicle she said, "I hope they get to the bottom of all this, especially given how you were treated before."  Wow...!

The sigmoid colon hadn't twisted completely (thank God!), it was twisting and untwisting, back and forth. That, plus the gas building up, largely explained the pain, cramping, stabbing, etc.  

A CT scan w/ barium contrast was done, blood, urine.  The barium was delicious, of course. In the past few days I've had trouble swallowing one sip of water to take my meds.  So imagine how good the lemon flavored barium tasted. (I AM so pathetic, I know!) 

I'm in my hospital room now.  So far ok.  The nurse seems nice.  But boy, are we ever fodder for gossip!  I'm actually scared of seeing the GI despite the fact that we traveled in the same circle back when we actually got out and about back in the day.  He's also my daughter's local GI and he's been good to her.  I'm also worried that I've built up "Dr. Hunk" too much in my mind, afraid something bad will happen to their manners or any number of other things.

So, that's where things stand at the moment.  Again, my thanks go out to so many out there.  

And so too, as always, I hope everyone's feeling their very best, only better.  Caio and paka!



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Tuesday, October 22, 2013

"Don't Mess Around with the Pancreas"



I've heard from so many, asking me how and what I'm doing, so a quick report regarding my pancreatitis. ("Quick"? I said "quick"?  Huh! In our dreams, my lovelies!)

It's been nine weeks since I started fasting.  If I had any artistic talent at all, I'd make a chart of the events - I know a scorecard would be such a help!  And I do want to emphasize that there might be a tiny mistake here and there since I'm not doing my usual obsessive fact-checking.  Furthermore, my brain is having difficulty thinking (more so than the usual!) because of the pain, and because I'm HUNGRY!

I was diagnosed with pancreatitis almost three weeks ago now, though who knows how long I'd had it before diagnosis.  Within a 10-day period there were three runs to the ER. The last run showed pancreatitis on the CT Scan and blood work.  To illustrate the hostility, unprofessionalism, substandard care, being treated like a number rather than a person (although I think a number would have gotten better care) compounded by the curse that surrounds you if the words "Chronic Fatigue Syndrome" or "fibromyalgia" are seen in your chart, a recap.  Mind you, many of the "mistakes" were ones that any third year med student should know:

  • I was never given a saline bag to hydrate me. (HUGE mistake!)
  • An abysmally incomplete history was taken.
  • Ignored were the signs of my fever of 103 degrees (high for a "normal" person, so imagine what it meant in my case because I normally run about 95 degrees) and a BP of 151/I-think 90 (whereas my "lying down" numbers are around 90/65-70).  My BP is all too often an indicator of my pain level.  Furthermore, I've run a BP over 125 only a handful of times, during hospitalizations.
  • I was not given anything for pain. (A complicated story regarding this brews in the med literature so I've had to simplify this point.)
  • No dietary advice was given.
  • No other verbal instructions were given, only a dinky copy of what is pancreatitis. For more on this, please look at my previous post.
  • I was told that my pancreatitis was like a "little flu."
  • I was offered morphine but not allowed Demerol, despite 20+ years of hospital records showing that morphine does not touch my pain and only Demerol helps. (Another complicated issue that needs to be dealt with separately.)

So where am I now?  Thank heavens there is an Internet and thank goodness my rheumy has been available. I'm definitely doing worse, much worse.  This is what I've learned, in the most simplistic form:

  • I discovered that my pancreatitis would NOT resolve itself in a few days. Anyone who has pancreatitis is in danger, but with MECFS, aka the DD, it's much more dangerous and complicated.  I'm learning this the hard way.
  • I also discovered that I need to fast in order to rest my pancreas.  As I wrote in my last post, coincidentally I had started fasting on my own weeks before.  How much worse would it have been had I not started fasting?  I'm now on clear liquids only. We'll introduce juice after I am pain-free (or in much less pain).
  • I am nauseated most of the time and need to take anti-nausea meds all too often.
  • The pain is out the wazoo.  No more squeaky wheel gets the attention: everything is screaming out at me.  It encompasses various parts of my abdomen/torso, my back, my left arm/shoulder, the left chest area most of the time, my right side occasionally, the pelvic region, the back of my neck.  It often hurts to breathe.  It hurts to eat (I tried a few times last week, thinking I was doing better). It hurts to drink. 
  • I continue to run fevers throughout the day.
  • Except for those four days last week when I thought I could handle some food, I've been "fasting" for nine weeks now.

What is the pain like?  Well, it's a lot of different kinds of pain.  I'm beginning to think someone out there has a voodoo doll of me, having a heck of a lot of fun sticking it over and over again! ;)

It is severe cramping, as if someone is stabbing me with an ice pick over and over again. It's also as if someone is taking a chef's knife and twisting my guts.  It feels as if everything is inside out and I need to throw up my guts.  These are just a few examples of the various pains.  I feel a tiny bit better if I don't move at all.  I get a tiny bit better if I don't drink anything at all.  Finding a position to lie in is a challenge.

How bad is it getting?  Today I bent over and suddenly bile started flowing from my mouth. Talk about "freaking me out"!

I should most likely be in the hospital.  Thus far, however, via various means, I'm being treated at home because we cannot trust the hospitals any longer.  Most are aware of the expression/phenomenon known as "suicide by cop," thanks to TV shows such as "Blue Bloods."  I KNOW that were I admitted, it would be "suicide by hospital." 

There is a famous saying in medicine, taught to medical students and definitely first-year interns:  "Eat when you can, sleep when you can, but don't mess with the pancreas." (Usually another word, "sh*t," is used in place of "mess.")

Well, the ER staff must have remembered only a little bit regarding the pancreas.  And, unfortunately, they forgot the gist of the saying: that the pancreas needs help through use of resting the pancreas (diet and fasting); that the patient should be hydrated (saline bag); that the incredible pain needs to be dealt with (Demerol); that the patient needs help by way of medication (antibiotic).  None of these things were done for me.

Yes, I'm ticked off.  Really, not much makes me fear when I get "sicker."  Those who read my blog on a regular basis may remember that I never knew I suffered migraines since early childhood until I went blind in one eye (it lasted only a couple or so days) during my second pregnancy, a "migraine equivalent." (Hubs panicked: I thought it was funny!) I student-taught an entire quarter/semester with an infected appendix - this was going from the exploratory surgery table back to school in a week (and driving from New Jersey to Virginia, quite the distance!). I was so intent on getting my BA in a little more than three years (rather than the usual four) and nothing was going to stop me. (I thought it was gutsy, not stupid!)  Without fear I put off my much-needed gallbladder surgery for close to two years - because I didn't want to be incapacitated if my daughter needed me at the "major medical center."

But I'm scared now. 

And hungry!  There's gotta be an easier way to lose 32 pounds!

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


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Friday, October 4, 2013

Friday Tidbits:The Vietnam War & Where Have All the Good Doctors Gone?


What was so special about the middle to late '60's and early '70's?

It was a magical decade.  We had the best music and we knew it, just an example.  After all, who doesn't love "Puff the Magic Dragon," - still?  My son and his wife sing the song to that baby who will arrive next year (Mandatory "Knock on Wood" and a "tphoo! tphoo! tphoo!")  He remembers me singing it to the kids when they were growing up and then as they got a bit older, pretending they were Peter, Paul and Mary, one of the boys with a broom in hand as a microphone.

But there was a lot of ugliness back then as well.  The Vietnam War was tearing this country apart.  It ripped families apart when fathers who had fought so valiantly in World War ll were more than upset that their sons would not go to war to fight communism.  It was an ugly era in too many ways: the Cold War, the Cuban missile crisis, the assassinations of President Kennedy, his brother Robert and then Martin Luther King.

So what good came out of that God-forsaken war where too many lives were lost?

It's an interesting observation, in my most humble opinion.  Yeah, right.  My "humble" opinion?  More like "I can be wishy-washy about a lot of things but my brain tells me I am right on this one."

There was that ugly draft which every young man wanted to avoid and each dreaded turning 18.  If you got a bad number on lottery day you had two ways of staying out of Vietnam: a) go to theological school or b) go to medical school.

Many wanted to get into medical school, theological school not so much. The probability of getting into an American medical school became nigh to impossible.  We learned a lot of new names of countries and cities like Guadalajara and other such places where the rejects, the wannabes, went to medical school with questionable medical educations.  4.0 average didn't get you far in the States, nor even the holy MCATS. You had to be perfect and then a whole lot more.

Our brightest were not stupid.  They knew that if they worked hard (impossible hours, up to 110 hours a week, now since made illegal) they would have a nice income, a secure life, the "American Dream."  It wasn't an easy route to get that education and all the training.  However, if you could manage it, it kept you out of the war and it set you for life. You were respected.  People looked up to you and trusted you.  Your patients loved you, for the most part.  The doctor saw a patient who needed hospitalization and the patient went in. Doctors talked to their patients and listened to their patients.  A 10-15 minute appointment was absolutely unfathomable.  If a physician felt that his patient needed testing, it WAS done.  If he felt that a patient needed medication, there was no snot-nosed insurance person with a high school education and no medical training whatsoever overruling a doctor's opinion, a doctor who'd had four years of university, another four years of medical school, then one year of internship to just become a doctor but many more years if specializing was where you wanted to go.

Times have changed, however.  Unfortunately. Gone are the brightest and most talented going into medicine. And why go into medicine?  Insurance companies overrule every opinion physicians have, they dictate to hospitals - and doctors are scrutinized for more things that go on than are imaginable. Who needs that hassle? There are so many easier ways to make a living.

Well, I'm totally fed up.  I moved to our town 31 years ago and the town had excellent medical facilities, great doctors.  Now it's all gone.  The doctors of my era are all retiring early.  The ones coming up are basically robots.  They are chickens.  They have no guts.  They have no stomach, no principles.  Yes, there are exceptions.  But therein lies the tragedy: they are exceptions.  Exceptions.  Really?  We want and expect only exceptions?

Last night I went to the ER for severe everything.  How to organize my thoughts when I, who does NOT allow myself to cry about pain and my health, was screaming at the top of my lungs sobbing for two solid days, feeling like my guts were being ripped apart and the nausea was killing me, just the two loudest squeaky wheels. (This all so Cliff Notes stuff of what went on.)  None of my meds were working.  My daughter wanted me to go to the ER to get some help. I finally called an ambulance in the middle of the night (giving the neighbors yet another show) because I was afraid the neighbors would call the police from all the screaming, afraid there was a murder going on in our house.

This was worse than the birth of my first child, a 10-pound wonder where I had a 36-hour, contractions-every-2 minutes-apart labor, right from the start, back labor with mid-forceps delivery and losing half my blood volume in a fraction of a blink of an eye, causing 3rd degree lacerations and the doctor screaming orders, the delivery room in total chaos while my body was jerking off the bed, every one holding me down as the doctor tried to do a whole lot of sewing to a uterus that wouldn't contract.  We picked our doctor carefully in New York, finding one who'd been educated in some of the world's greatest medical schools (Great Britain, Germany, Israel) and ended up needing every one of his talents to keep me alive.

So, why the hesitation in going to the ER?  I've, generally speaking, had great medical care.  I freely admit that I've basically had the champagne of medical treatment, not having to deal with too many robots. Well, everyone with the DD knows this hesitation to go to the ER, it's a no-brainer.  Once those words, "Chronic fatigue" and "fibro" are uttered or seen on a chart (IF they even read the chart, a whole OTHER issue) that negates everything.  You are nothing.

Last week I had two ER runs and returned home in worse shape than when I went in, another horrid story I've not gotten to.  So I did not want to go at all now.

It took the "super special IV person" - a very wonderful soul - 45 minutes to find the vein she could get into. Such fine work I've never seen done to my poor veins. A truly amazing job.  Then when she got half the blood she needed, it stopped coming out, a common problem with me.  I had a CT scan of my abdomen this time (last week was a CT scan for the head due to my many falls).  The CT scan technician was a dear. When she asked if I wanted a cool washcloth to my forehead I realized that I must be running a fever.  Yes. I was indeed.  It was 103 degrees - high for a normal person, but my temperature normally runs 95.  The BP, which lying down should be, for me, 90/65-70 was now a whopping 151, another "tell" as to how I'm doing.  But I'm being told it means nothing.  Then why, pray tell, take the numbers in the first place?

And the CT scan of my abdomen?  What could we deny here?  What can we possibly conveniently overlook?  I have pancreatitis.  Period.  It shows up.  I have numbers AND images.  But oh no.  It's not a biggie, it's all imagined.

I was told it was just like a bit of a flu.  I was not given any instructions other than a cruddy and badly copied explanation sheet, not discussed at all with me though throughout the sheets "they" kept saying, "discuss blah blah blah with your doctor."  I was offered morphine for pain.  Morphine does not work for me as all my charts from 1988 and on document.  I asked for Demerol because it's the only medication that has worked in the past. No, can't have Demerol.  Dilaudid?  Offered and then suddenly they decided to retract that.  No. Only morphine.  I'd never had Dilaudid but at least I'd have a chance of it working.  But why take the morphine if we know it won't work?  It was the "old major medical center mentality" we'd experienced for two years with my daughter....again where pain was the issue and nothing was done about the pancreatitis whatsoever. Though lets be clear: my daughter's pancreatitis and mine are/were worlds apart, with her.... well, I just can't go there.

The doctor did not tell me that I must eat as little as possible in the next four days - though the sheet did! - with, as my rheumy advised later, only a couple of teaspoons a few times a day of applesauce and no more.

Coincidentally, I'd stopped eating six weeks ago because in the past year I've developed another weird symptom: pain upon eating (or even drinking water unless it's practically frozen), much like a body migraine. I've been told by five excellent doctors that they've heard of this phenomenon but that no one knows why this happens. So six weeks ago I stopped eating, choosing the not-eating pain over the eating pain - a good way to lose 30 pounds!  I was, luckily, taking an antibiotic for a badly infected pinkie which looked so gross I'd be embarrassed to post it - and come on, I've posted some really embarrassing stuff here, doozies.

In other words, it's a good thing I wasn't eating and that I was taking the antibiotic because those are the treatments needed.  Yet no history was taken in the ER, no questions asked about what medications I had taken that day or even yesterday.  Nothing, nothing, nothing.  No urine test, no IV fluids for a very dehydrated me.  Nothing, nothing, nothing. Chest pain not a factor at all.  Blood in the (oh G-d, do I have to go here? You know...don't make me say IT!)

And here I stop until the next post.  There is still so much to tell of this fiasco.  For the nausea medication I had to wait hours - but that's just a tiny morsel of the nightmare.

But there is a moral to the rehashing of this story.  Allow me to tell you this: try to stay away from those wimpy physicians who are too young to remember the Vietnam War and are doctors in name only.  Just as anyone in the medical profession will tell you, try not to go to a hospital in July and August (because everyone is just starting), so too it is good advise to try to find the old doctors out there who were our brightest and who have guts. Whether they didn't go to Vietnam because of principles of an undeclared war or they wanted to stay away from battle, we, the patients, were lucky to have some awfully gifted doctors with many advances made by those talented men in those years. Now these gifted people go into technology or business. Who needs all that aggravation of being a doctor?

I miss those day, those doctors, the compassion, the care and their knowledge.  Peter, Paul and Mary should have added to "Where Have All the Flowers Gone," the phrase "Where Have All the Good Doctors Gone?" I hear it over and over and over again.  Doctors making gross errors that cause deaths.  OK, errors will always happen.  When my daughter developed pancreatitis on her death bed keeping everyone jumping, we realized it was extremely bad luck with medication, and we didn't blame the doctor. We knew he had done his best.  But he was one of a few exceptions we came across.

I'm extremely proud of being an American. Embarrassingly happy to be an American.  But what I've seen now in the last few years embarrasses me. It is embarrassing that our country has come to this.

And lest we forget those young men, who DID go to Vietnam, thank you.  As to those brave souls who didn't make it home, I think of you each day, hand to God.  You were true heroes.  For those of you who remember that music and that era here's a bit of music that may and should make YOU cry.  Yes, where HAVE all the brave soldiers gone?  But after the experience I've had these least few years with hospitals, I can't help saying, Where have our great doctors gone - the ones who are supposed to heal us?  Where have they gone and when will anyone learn?

And on that cheerful note, I say the usual: I hope every one is doing their very best - only better!  Ciao and paka.


NOTE: I want to thank all of my twitter family for the help in getting me through the ER nightmare.  There was so much drama going on and not the good kind.  Without the ability of having a health care advocate beside me, you kept me sane and your prayers helped.  Things are really still bad but the kindness of my friends was comforting beyond words and I'm for once not embarrassed to say, as I type this, that I'm in tears because so much support was out there for me.  Words will never describe, other than to simply say, thank you.  And Linda, thanks my dearest friend of 43 years, for all the hours of conversation in the last few weeks/days and Sharon, my Villa sister whom I've never met, thank you for all your words, those nuns up there matching us up.....you know how much I love you two wonderful women.  And Mariula, спасибо дорогая. And, of course, my wonderful daughter who wasn't able to be there today/yesterday, but is now outraged and going ballistic because she's been there with all this digestion thing, though her's was in another stratosphere, my pancreatitis small potatoes compared to what happened to her.


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Tuesday, September 24, 2013

The Mary Tyler Moore Show

Before

Now what in the world could Mary Tyler Moore (aka Mary Richards for those who remember that iconic show) have to do with anyone who suffers from CFIDS/ME/CFS and/or Fibromyalgia, not to mention another couple of dozens of "invisible" and debilitating illnesses?  Well, bear with me and you'll find out - I hope!

As I wrote yesterday, I'm now living through the second scariest and most agonizing period of my entire life. Number 1 was, without a doubt, when we went through my daughter's ordeals for two years.  She had more near-death experiences than anyone should.  Now I'm living the 2nd worst time of my life.  In case you've forgotten (and who could blame you with fibro-brain going on?) I'm living through the scariest time in my life, from the CFIDS/ME/CFS and Fibromyalgia and all the complications involved, but also in just about every aspect in my life that I can think of.  As I mentioned before, in missing about five weeks of posting, y'all have missed out on a whole bunch of "good stuff."  Of course that depends on how desperately you want to know what's been going on.  (And I do so hope someone cares!)

It's amazing what people know about you and what they don't know.  My daughter was over a few days ago, bringing over some liquid detergent.  I'd run out of two and a half large bottles in about three days.  Daughter was a bit surprised that I was able to do the laundry, especially so much.  

Well.... blow me down!  She, who knows me pretty well, never knew about this quirk of mine.  There are two tells: one is pretty obvious.  When things get bad my green eyes turn blue.  When I get REALLY really angry, I am a cleaning fiend.  Combine that with....

OK.  Where's Mary Richards in all of this?  We need to go back to 1970 and thereabouts.

In college we would sit in the corridor huddled around a tiny TV to watch this amazing show of the woman we all wanted to be.  We wanted careers like Mary had, not the stuff that women were forced to do.  To put you into the era, my entering class was the second one to officially admit females.  The school had to "refurbish" a second dorm for us, evidently very quickly, running out of precious time.  How do I know this?  Well, when we arrived, all fresh, bright and bushy-tailed, we discovered that our huge bathroom had urinals in them (now THAT was interesting since I'd never seen one before!) and gang showers with no shower curtains.  (Try being big-breasted!  Those endowed tried to take 3AM showers for a smaller audience.)  

So, I hope that sets up the picture. Mary Richard was beautiful.  She had the perfect clothes, she had the perfect job, she had it all.  We all desperately wanted to grow up and be her.

During one episode Mary (the one in the TV, not any old Mary hunched on the floor of the hall) was upset about something, and it was a BIG upset.  Either Rhoda or Phyllis made a comment that when Mary gets upset she starts cleaning.  I loved the line and really never gave it another thought. 

So, back to the new age and the new decade.  My daughter comes over to the house and sees that there are a lot of things going on, but especially laundry.  At first I didn't understand why she was so surprised and didn't even give it a second thought.  But then my daughter said a few things that amounted to "I'm so glad you're taking this all so well and that you look good," yada, yada, yada.  

What?  Are you kidding me? In what world am I taking this well?  In what way could all this manic cleaning be a good thing?  

What no one's ever truly realized is that if I'm in a lot of pain I wash floors, cook, bake. They were "sort of" used to that premise though not really, if you know what I mean.  I've been doing this sort of diversionary thing since I was a little kid.  In fact, my mom would say, "children do not get headaches, they cause them." What's a kid to do?  So, I found coping mechanisms along the way. With child #2 I went blind in one eye for a couple of days and a neuro-ophthalmologist  (a rarity even in NYC in those days) told me it was a classic "migraine equivalent."  For the debate on that, this link re migraines will tell you about that little adventure.  

The neuro-ophthalmologist was amazed at my "diversion" tactics.  I can handle a LOT of pain.  Not bragging, just the truth.  In fact, when I see a new doctor, it's hubs or one of the kids who "squeal" that I can withstand huge amounts of pain. I feel like everyone says that and so I don't go there and am embarrassed when said family butts in with this bit of info. 

So, pain I can't tolerate: SPARKLING floors that a baby could eat off of.  Really.  (In fact we need a new kitchen floor and that isn't driving me nuts ONLY because I am at the end of my ropes in this awful stuff that's going on around me!)  

So my poor daughter sees that I'm doing laundry - I love doing laundry and rarely get to do it any longer - and thinks, "mom is doing so well!"   Oh, you little amateur, my baby. You know your mom not quite as well as you thought.  (Can I a put a "huh!" in there without sounding too petty?)  

You see, when I go ballistic, and I mean when it's a rage, sadness, fear, feeling that your own family doesn't understand, unbearable pain that's at the magnitude of a definite 10 but you want to say it's a 20, when I'm completely off the wall in pain with nothing helping me at all, I start cleaning walls, mirrors, play jack-in-the-box (popping in and out of bed, falling half the time), that means that you really do NOT want to mess with me. I'm using all my diversionary tactics.

I've always had a "thing" about cleanliness.  Up until I became a baby factory, I used to take three showers a day: in the morning to wake up and get all that filthy, disgusting dirt that you just know I picked up from the sheets that I just slept on (which were changed every other day), a second shower once home from outside (can't blame me for that!) and a final (number three in case you've lost count), to make sure I'm going to bed clean because it felt so good.  

I vacuumed a not small house every single day, even when I was overdue for baby deliveries, while my mom would practically have a heart attack that I was doing such disgusting things. She also thought it completely immodest and perhaps immoral to be out in public once I was about 6 months pregnant. Yes, it WAS a different world!

So, I had to explain to my daughter how this works.  

Thus far, every pillow in the house has been washed.  That's four beds with at least 4-6 pillows on each bed but for the twin bed with only three pillows but lets not forget the "extra pillows" for when you need different pillow(s) for who knows WHAT reason!  The down ones need to go to the cleaners but I need someone to take them. I have washed every single pillowcase, pillow cover, sheet, duvet cover.  I've washed almost every T-shirt, leggings, nightgown, pajamas and any other article of clothing you can imagine but for the ones that need the cleaners. 

I'm now into the many, many tablecloths and cloth napkins.  (I'm crazy in setting a great-looking table....we all have our vices, admit it!  Come on... it only hurts the first time!)

I've emptied out closets.  I'm organizing jewelry.  I'm organizing makeup (how embarrassing...lipstick story is for another day!!!).  

I'm throwing things out right and left.  Of course, only after enough suffering on making that decision.  It doesn't get thrown out if there isn't enough ANGST.  I do have an excuse for that, however: I am deficient in the "throw things out" gene.  I always throw things out that I end up needing.  I'm still grieving about a purse I threw out twenty five years ago! Yes, yes, I know it's time to get over it, but..... try to see it from my side! PLEASE! (LOL!)

Today daughter stopped by to tell me that she's too tired for Dancing with the Stars and could we hold off another day (tomorrow) to watch it?

And she STILL doesn't understand the premise here.  I am royally upset, ticked, afraid, sick and so many, many other things that only a bucketful of miracles and prayers can turn things around.  And yes, my friends here, on Facebook and on Twitter... I am so very much indebted to you.  Never let anyone tell you that Twitter is a waste of time.  Not only have I made some really wonderful friends here but the support has been incredible (to be gone into at a later date.)

So, as a tease I will write down what I plan to cover, if I can get the "energy" for it:
  • Yesterday I couldn't take it with the gardening and will report on that front for all the spoonies out there who love gardening but have had this pleasure taken away from them due to stupid illnesses.
  • I plan to write about the 'diet" (way of eating) as requested by a few people on twitter.  I've been putting it off because I barely know where to start but it's the right time for it now... if only I can get my head around it.
  • There were the insane ER visits a couple of weeks ago that have got to be heard because this is hitting not just in my geographical area but is taking place all over the US and it's frightening. 

And so daughter understands me a bit better now.  You can't blame her for not knowing this.  How often does this cleaning diversion take place to the laundry and closet level?  If we're lucky, it's about once every few years.  But you get to the point that all the pains going on in your life get to be too much and nothing, other than prayer, helps to get over things as well because a clean, decluttered, organized home ... there are just very few things that make you feel truly at peace.  It's such a small thing, you would think.  But it's incredibly healing.  For those of us sick with the DD, only when you get enough of an adrenaline rush can anything like this be accomplished - at least for me.

Now someone take me out to the back of a barn somewhere and just shoot me!  Talk about pain and paying back for all the stuff I'm doing.  Sometimes you just have a no-win situation.  Rest and the pain is intolerable.  Do something to distract from the pain and you pay in spades.  What's a person to do?  Work on until you drop is my most recent motto because it won't last and at least I'll get something out of it in the end.... or so I hope! 

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


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