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, 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!

(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, 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.

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Friday, 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.

(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!)