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, 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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  1. Irene, Bless you! How utterly miserable AND infuriating to be treated so extremely poorly by the medical people. (Vast understatement!) I'm sincerely wishing an easier and less painful time for you. You are SO due a break!
    We're all doing fine - waiting on the birth of our 8th grandchild any day! We are very fortunate all the kids and grandkids seem to be doing very well.
    Hope your health issues take a turn for the better!

    1. Great to hear from you, Martha. Please know your comments always make me feel better about myself and are always so appreciated. Thank you!

      Grandmother for an 8th time...you are so lucky and blessed! I'm so very, very happy for you! xx

  2. This infuriates me so much. I wish I could go make some heads roll. I know a lot of the time those of us with ME/ fibro etc wish for something more conclusive being the nutters that we are but we think then it will get us noticed. But it seems not and for it to be for something as serious as pancreatitis is horrific.
    Have you kept going to the same ER? Shocking that you are going through this without much help. It's just negligence. Not that you particularly want to be in the hospital with "just" fibro and ME symptoms making a hospital stay detremental.
    I hope that some how you can get the help that you need. Just know that there are a lot of people wishing you well and who you have come to mean a lot too.
    Sian xx

    1. Thank you, Sian. Unfortunately, I believe this will be the norm all too soon. I've seen the same in another local hospital. I'm angry and sad because our town used to have exceptional healthcare, so good that people would come from major cities to be treated here. I've seen this sort of thing in one of the best medical centers in the States. It's our future, I'm afraid. xx

  3. Dear Irene,

    I am so angry about how you have been treated! How can pancreatitis not be even more serious because of the DD is beyond belief. I am so sick of doctors who think it's acceptable to 'play' with someone's life. It's unacceptable. I hope that your rheumy is able to help you.

    I'd offer to ship over a proper doctor rather than the poor excuses for doctors that you were subjected to in the ER. Unfortunately, I have not been able to find one who will even acknowledge what ME is let alone anything else.

    I hope that you will be ok. Thinking of you, Alpa xx

    1. Thanks so much for writing in, Alpa. I'm sorry it took so long to reply but the blog wouldn't allow me to write replies on my iPad and then I messed up my computer trying to fix that! But please know that when I was able to look at my blog, all the comments were such a help in getting through everything. Hope you're doing ok-ish! xx

  4. Wrote to you on Facebook. I can't even begin to express the rage I feel about what happened. Take care of yourself and do not let this go! This moron needs to be held accountable.

    1. Thanks so much, Melissa. Actually knowing you, I was afraid to write too much because I didn't know how much outrage you could handle...you're always there for me, almost ready to fight my battles for me! ;) xx