About Me

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

Tuesday, 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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  1. Bowels are never nice too talk about. I avoided going to school for 3 years because I had bowel problems and I had panic attacks thinking of how much of an embarassment things could be. Did you have a sigmoidoscopy? I'm glad they were sensible enough to not go ahead woth the colonoscopy, it's a big deal. I ended up hospitalised after one as it had bruised me.
    Hope you're getting lots of rest now. Are you able to eat and drink?
    Love as always
    Sian xx

    1. Yes, had the sigmoidoscopy. There was just no way they could do the colonoscopy b/c nothing could get in, b/c of the blockage. The barium I drank for contrast didn't show anything in the CT scan for abdomen b/c the barium couldn't get thru. We finally had to rely on daily X-rays to see what was what & to trace progress. Ugh!
      So very sorry you had to get your problems at such an early age, Sian. And I finally got clear liquids around day 8 in the hospital and then progressing each day. xx

  2. Dear Irene, I really feel for you. Outrage at how it took four visits to the ER and having connections, just so you could get to see a proper doctor. Scandalous is an understatement! I'm sorry you are going through so much. I do so hope your doctor will be able to make sense of it all. Have been thinking of you and hope you are being looked after properly now.
    Take care, Alpa xx

    1. I'm a bit upset at the moment. I had to cancel today's appt with my GI. I'm just in too much pain, shaking, trembling. My arm is a mess as well. When I arrived at the ER on Sat nite to get an X-ray to see what was wrong with my arm, a BP record was broken: I was up to 190/101, quite a departure from the 90/65-70 we try to keep from getting lower. I think my body is just giving out. Too much going wrong too often & it's such crazy stuff. All my docs are yelling "rest, rest, rest." But how does that get done when you need to go to doctors' offices and have testing done as out-patient? It's a no-win situation.
      But don't get me wrong. My personal physicians in the hospital really went to bat for me.
      Thanks so much, Alpa, for your concern and sympathy. I just don't want this stuff to happen to anyone else. People have to know and remember that the doctors and hospitals exist FOR the patients. xx

  3. I'm glad that you can start to consume more and that you are getting good caring treatment. Sigmoids are bad enough. It's the gas that they use that is the worst. I know you've got a lot of appointments etc now but hopefully it's to keep you in good hands and excuse the pun but to get to the bottom of what's going on. It took 10 years for them to finally find out I had ulceration and a hernia by which time I had M.E.
    Lie back and think of dr hunk. Xx

    1. LOL! Now why am I not surprised that last bit came from you, Sian? Good advise! xx

  4. I have been in your exact position. I have been hospitalized twice for severe constipation. Nothing helps.. laxatives, enemas, milk of magnesia, fluids, or mag citrate. It is very discouraging & painful. By some shear luck things for me eventually "pass" & when they do I quickly feel better. You basically get toxic from being so backed up.

    1. Thanks for writing in. Yes, it is definitely the toxins that get to you, until there is no room for anything. It was bad though when I had 1 doc with 40 yrs of experience and another with over 30 yrs say they'd never seen it this bad before. Heck. I've had this mess for around 38 yrs and this was like nothing I'd had before. Molasses is a smell I never want to be near again. But it did help, finally. Hate to say that it's great to know others out there know what it all feels like, but it IS reassuring. xxx

    2. Milk & Molasses enema is that what they tried? I have had those as well. I never knew there was such a thing until I ended up in the hospital getting one-LOL!

    3. They did three of those. Evidently there's one doc in town who swears by them & the nurses said they do magic. My very European mom would have approved! She's been a "natural" nut all her life. Frankly, I was surprised she'd never exposed those to me when I was growing up! ;) xx

  5. Irene, you poor thing! There is no polite way to write just what I think of the way you were treated. Feel free to imagine it though! It's definitely a no win situation when you have to rest and at the same time have tests done. I'm so glad that your doctor in hospital at least, was on your side. I find that trying to manage my life is being done at the expense of my health. It's just impossible to do both! Maybe one day I'll find a doctor who has a brain and isn't in denial about ME. Thank you for posting and letting us know how you are. It's high time that doctors and hospitals wake up to themselves, without patients having to fight all the time. Take care, Alpa xx

    1. Oh, Alpa, I really need to pray that you get a doctor who believes in ME and who knows what to do. Honestly, I can take just about anything until I came into contact with someone who thinks it's all in my head, despite real medical bio markers like the elevated protein in my spinal fluid and so many other real indicators. I just can't handle the nay-sayers. How to get you to someone who can really help? I wish I understood the British health system better so I could give you some real advise on how to get to someone who can actually help you. I hope this blog at least gives you a feeling of sanity, that you are not alone! xx