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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Medical Political Correctness Gone Wild

Happy Birthday to my sweet daughter!  You, my dear, are alive and well, after a h*ll that no one should ever have to go through.  It was because of you that I had the courage to start this blog adventure of mine.  It was because of your encouragement and belief in me that convinced me that perhaps I did have something to contribute to the world after all.  It was your courage that said, "Heck, yeah, you can write about me, I trust you!" that spurred me to write about the good, as well as the bad, in what is going on in medicine today.  You have been my encouragement since a tender age, even when I would say, "I'm the mom, not you!"  I forgot that I had written you a special letter when you started college, but you showed it to me one day years later when I was really upset with you about some trivial mother/daughter "thing."  I was shocked that you always carried it around in your wallet.  You told me that it had, indeed, gotten you through a lot of bad days.  The corny line that got you through the most however?  I'd written that "you are the wind beneath my wings." (Good grief!  How corny can a mom get?  Evidently, very!)

And so this post is dedicated to you because no one should ever be treated the way you were when you became so ill so suddenly.  And I am ever so proud that you were able to make it through what the rest of our family is still horrified about.  In your honor I started this blog and in your honor I want to write about that which unites us both on yet another plain: that of both of us having to survive some pretty horrid hospital experiences, ones which are just wrong and should make us stop, think for a moment and wonder, "is this what we want happening in our country?"

And so here we go...

Every doctor practicing today had to take quite a few science courses in college in order to get into medical school. This is a given.  Right?   Right.  Then why is it that many doctors are making decisions not based on the scientific method but rather based on whatever is politically correct at the time?  

As we all know, the scientific method is simple - but also effective - in establishing correct theories about science in general and medicine in particular.  First, one states a hypothesis and then observes what happens in the real world.  If the hypothesis explains the observations, it is a good hypothesis and stands until it cannot explain future observations, in which case, a better hypothesis is made. 

What is never done in good science is to ignore the facts in favor of keeping a belief or theory.  No matter how much you believe in a particular hypothesis, if the facts don't agree with it, you have to junk the hypothesis and get a better one.  Believing in a theory and ignoring the facts is worse than throwing out the baby with the bathwater.  It is throwing out the baby and keeping the bath water.
  
So what does this have to do with anything? 

Over the past few years I have personally witnessed political correctness trump good medicine and have read about health plans pushing treatments for various medical conditions, this despite good medical literature showing that these treatments don't work. (Note: in medical lingo, "good" means what we in the real world think of as "excellent.")  Here are some examples:

1. It is known that cognitive behavioral therapy (CBT) does not work for many patients with CFIDS/ME/CFS, particularly for pain and fatigue.  However, from what I read it is the preferred treatment by many third-party payers, probably because it is relatively inexpensive as opposed to, let's just say, Ampligen (poor, poor Ampligen which people have been trying to get through since the 1970's!) which HAS helped certain subgroups of CFIDS patients.  Furthermore, I personally think that it's a cop-out for doctors who have NO idea what to do with those severely affected by CFIDS.  And I do mean "cop out."  For shame.

2.  Similar to CBT in its ineffectiveness in helping CFIDS/ME/CFS patients is graded exercise.  However, graded exercise can actually make CFIDS symptoms worse since many CFIDS patients cannot tolerate exercise and their fatigue and decreased stamina worsen after attempting a graded exercise program.  Yet graded exercise continues to be touted as a legitimate treatment for CFIDS and is preferred by third-party payers. (Again, no better ideas, but let's give patients "something," even if it hurts them: let THEM be the failures and not "us.")

3. Aerobic exercise has been shown in some studies to help fibromyalgia patients.  However, one must understand that any fibro patient capable of exercising on such a level probably does not have severe fibro. When a patient with severe fibro, who may often have serious co-morbidities, such as growth hormone deficiency or DHEA deficiency, tries to do aerobic exercise and fails because of very low stamina that patient often feels like a failure and, to make matters worse, may be called "noncompliant" by the physical therapist or the doctor.  My rheumy told me that one of the first things he learned in medical school is not to blame the patient, but that is exactly what happens in this situation.

4. To make matter worse, too many medical practitioners often ignore the medical literature and when studies are brought up for discussion they often get defensive or are completely wrong...

• When my daughter was extremely ill and dying, in addition to everything else going on, she started having severe myoclonic jerks right after her emergency life-saving surgery.  I asked her consulting neurologist, a full-blown attending at a "major medical center," one of the very best in the US, about her being prescribed Klonopin (clonazepam) to treat the jerking.  To my surprise and horror I was told that Klonopin CAUSED jerking, which is an absolutely false statement.  Given that I was still new at this "game" of digestive illnesses, the fact that I was still reeling from almost losing my daughter, and that I thought that surely I had my information wrong, I didn't question the doctor at the time but filed it away immediately.  Guess what: he was indeed wrong!   Klonopin is useful in seizures and in preventing myoclonic jerks.  I should have said something: after all, I've been taking Klonopin for nearly 20 years, yet I allowed this bozo to bully me.  Obviously, THAT wouldn't happen again.  In fact, it didn't happen again for the next five or six hospitalizations, which followed and I heard awful information, such as....
• My daughter had had issues with her liver for many years -not from drinking, I assure you, as some doctors had insisted on believing before reading her history in the chart.  One day at the "major medical center," a doctor asked my daughter why she hadn't taken Tylenol for her pain.  Was he insane?  She needed REAL painkillers! Furthermore, if the huge amount of painkillers she was already on weren't taking care of much of the pain, what the heck was simple little Tylenol going to do?   But what was worse: I looked at him dumbfounded and finally said, "is  it wise for her to take Tylenol, given her history with her liver?"  He looked at me and said, "Oh those studies of liver and Tylenol have all been over-inflated.  We don't find it to ever be a problem."  Was HE on drugs?  (And I don't mean the legal kinds either!)
• The medical literature is very clear about the protective effects of cigarette smoking when it comes to Ulcerative Colitis (UC).  Our local gastroenterologist had no problem discussing this fact with my daughter, my husband, and me but since the she was getting progressively worse by the hour, her GI insisted that it was time for her to be sent by ambulance in the middle of the night to a major medical center for a definite diagnosis and for treatment.  He, our local guy, who had trained with some of the best of the best at the "major medical center" had no problem seeing that there could be a correlation with the fact that she had stopped smoking just days before she showed her first signs of the illness, which led within a few weeks to her almost dying several times.  Her illness was a vicious, never-seen-before sudden onset hybrid of Crohns and UC but he honestly believed it was Crohn's and even said to her, "if I thought for a second that it's UC, I'd have you outside right now with a cigarette, but I really think it's Crohn's."  (Paradoxically, Crohn's is made worse by smoking, according to most, if not all, literature.)  After he had dispatched her to the "major medical center," seeing that she was SERIOUSLY ill, the various attendings would call it UC one day, Crohn's the next.  When I finally pointed out the smoking and UC correlation as perhaps a clue to what was going on, I wasn't just rebuffed.  I was looked at as if I were Satan incarnate and told I was crazy.  Really! 
• It became quite convenient that two years later, once the nicotine patch was really "big," her newest GI physician at the "major medial center" suggested that she use it.  Ah!  Smoking but not smoking, if you get my drift.  Suddenly, nicotine was considered a factor and part of the treatment. 

My point is, how can good medical care be provided when legitimate medical findings are ignored and the scientific method is cast aside because of political correctness?

Russia was ahead of the world in the beginning of the 20th century when it came to genetics.  However, because of bolshevist/communist philosophy, where ideology wanted to ignore that "brains," for example, can be hereditary, genetics was called "the whore of capitalism," was thrown out the window, the proberbial baby with the bathwater.  I was shocked to learn this when I stayed in Kiev with family friends, where both husband and wife were physicians.  They couldn't believe how much knowledge I had of medicine in general and genetics specifically.  They'd brought out a genetics book for me to see, published now that the former Soviet Union had just fallen apart.  To my horror and their delight, I knew more of the conditions shown in photographs (such as progeria, acromegaly, etc.) than they did.  Let me assure you that this was NOT because I'm smart, but because I watched a LOT of Phil Donahue.  

This is what scares me.  Because of medical political correctness, will our country suffer the same sort of fate as what happened in the Soviet Union under Stalin?  

Anyway, this is my Happy Birthday post to my sweet, smart daughter of whom I'm so proud.  (What's a birthday greeting without the mention of Stalin?  Joke!)  V: you'll always be the wind beneath my wings: corny, but true. Thank God that you got to the "major medical center" and had a fantastic surgeon.  But thank God also, that you survived - despite some really cruddy so-called physicians.  May you live for many, many decades, happy and healthy!  You bring so much joy and goodness to so many. Happy Birthday and Многая Лета!

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


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You CAN Tell A Book By Its Cover Sometimes...

I often think that people still wonder why in the world do I do so many articles on beauty, be it skincare or makeup, when I'm supposedly a blogger who is writing about CFIDS/ME/fibromyalgia and the myriad of problems that accompany these core illnesses. You'd actually be surprised at how often I wonder also.

I'm sure I have at least another hundred reasons and examples, but I thought I'd mention a couple today, even though I've "gone here" before (one example).  I'll only cover one or two others today in order to keep this post from getting ridiculously long - I'm really working hard on that!  (Huge sigh of relief from my faithful readers: I heard that!)

Those of you who've been following this blog are also probably aware (ad nauseam) of what happened to my daughter just two years ago: that she suddenly came down with some sort of never-seen-before vicious hybrid of Crohn's Disease and ulcerative colitis and within four weeks of going to her first ER visit and hospitalization had lost 45 pounds. She had been hospitalized five times at three different hospitals and during her second hospitalization at one of America's best medical centers for this problem her colon perforated.  She needed emergency surgery ASAP.  And this was just the beginning of her problems. (Some of it can be read here.) 

With each doctor she saw (and there were literally hundreds in the almost two-year history) I was constantly asked her medical history because my daughter was in howling pain, too out of it to understand what was going on around her, not able to swallow saliva, much less water or ice cubes.  They asked and re-asked, repeatedly, about her family history. They kept DISBELIEVING my husband and myself when we would say that we had no history of Crohn's or ulcerative colitis in either of our family histories, absolutely convinced we were lying or not seeing something.  They were so sure that Crohn's and ulcerative colitis were hereditary, though these diseases are woefully not understood and there are only lots of "trends" that are seen and heredity happened to be this particular medical center's "hang-up," trying to fit square pegs into round holes, if you'll excuse the pun.  I wanted to "smack them upside the head" at times, as some of the locals around here often say, hoping in vain that that would put some sense into them but refrained, thinking of the beloved nuns who'd not agree with St. Peter if they saw him let me through those Pearly Gates one day!  I did disclose that I had been hospitalized once for colitis in 1975 as a result of the antibiotic use during the flu that led to my CFIDS/ME and fibromyalgia, along with IBS.  But Irritable Bowel Syndrome is NOT Inflammatory Bowel Disease, a big distinction.  They were just so convinced that their "theory" that Crohn's/UC is hereditary, though really, no one actually knows where it comes from, nor why, at the end of the day.  It was simply maddening.

But what I found really interesting yet really frightening (another one of those understatements I tend to make) is the thing that I noticed about six months before my daughter got sick.  It involved her beautiful green eyes.

Let me back up for a moment.  I had the good fortune to be under an elderly doctor's care at a holistic clinic for about a year back in 1997.  He'd been running the clinic for about 50 years - yes!!  50 years!  And what was his main interest and that of the patients he saw?  CFIDS/ME/fibro!!!!  Yes!  Amazing!  He had patients flying in from all over the country to see this old man and the various practitioners he had working under him.

One of the things that this elderly (ancient) physician believed very strongly in was iridology and also looking at a patient's skin tone, the color, the pallor, the patient's gait - all the many bells that go off in a real physician's and healer's head like a computer that has not yet been invented, which registers everything that is right about a patient and what is wrong with a patient.  Given that my mom was always a bit of a health nut herself, when America was interested more in martini's than in carrot juice, I was familiar and even fascinated by this old doctor.  Here was a doctor who was spitting back things to me that my mom had been espousing all my life, and I had rejected them not only because it came from my mother, but because it was from my Russian mother and though she had had a degree in dentistry, it was not an American degree, but one from Europe, thus null in the US.

So about six months before the infamous frantic run to the ER and the resulting first hospitalization, I had noticed something that I suppressed for the first couple of months.  And how I do NOT do denial - it just takes up too much energy, something I, as a "spoonie" or one who is trying to build up "health credits" constantly,  am always trying to preserve and use judiciously.  

I had noticed that my daughter's beautiful green eyes were acquiring a translucent quality.  Whereas they had been a rich solid green before, they were now almost like see-through marbles.  After about two months I was starting to get obsessed about it in the strangest way and this was becoming just too much denial and I don't function well that way.  And yet here I was in heavy denial.  Finally I realized that I had to mention it to my hubby: after all, if anything was amiss, I'd never forgive myself for it and I knew that when (note, WHEN, not IF) the poop hit the fan, I wanted it on record that this was something I'd noticed before, that it hadn't been an "immediate problem," but something brewing.  Yet it took me a long time to work up my nerve because I was just that nervous about jinxing my precious "baby."  Her father took note but wasn't overly concerned.  I later noticed that she was sleeping a lot and that also give me the heebie jeebies, but it was the eyes that scared me the most.

Why the eyes?   Because, for the most part, eyes are no longer studied in a way that gives a doctor the whole picture of the patient.  Neither is the skin.  And yet both should be taken in as part of a patients' health, good or bad.  

Yes, the obvious signs in eyes are still looked for, the ones that can't be overlooked: the yellowing of the eye for jaundice, for example, or the signs of a concussion.  But think about it: those are just the first clues that then call for fancy testing.  But there are so many other things that are skipped.  I remember learning in Psych 101 that the dilation and contraction of the pupil could mean lying or an excited state, that Chinese jade merchants would look at the eyes to see if the customer is truly eager to acquire what he sees in front of him or not and whether haggling should continue or stop.  We parents were told to look at our kids' eyes for signs of drug or alcohol use.  But doctors?  Nah...forgetaboutit!

And we patients should be outraged about it.  Look at how a doctor barely touches us any longer.  I've been to dermatologists who have not touched my skin - afraid that my freckles might be catching?  I've been to a neurologist in the past year and a half who never touched my foot when I told him about my newly-developed neuropathy in order to ascertain if I did indeed have it and how extensive it is.  I've been to a famous CFIDS specialist who also claims to be a fibromyalgia specialist, who only touched 3 of the 18 tender points - and reluctantly at that!  

And now doctors and third party payers are evaluating patients by phone or computer?  Are they nuts????

When my daughter was moved out of the OR and into the Recovery Room, my hubby, the son with us and I were able to visit her for about five minutes, to be reassured that she had indeed made it through the surgery.  We had prepped our son by saying that she would look awful when he saw her.  After all, she'd just been through pretty serious surgery - panicked immediate surgery - and that she would look a bit banged up, the color of her skin would look awful, and so forth.  We felt we needed to warn him: he had been through more than enough already, having been there to help me cope with my daughter 24/7, running errands and seeing things no 30-year old young man should see in that medical center, the suffering not just of his sister, but of all those around us.  And he'd had to try to keep me calm until his dad drove like a bat out of h*ll from our home to the medical center, as I tried hard to keep up a calm exterior during said surgery, not very successfully, I might add.  

Instead, what we saw in the recovery room was a real revelation: my daughter's skin was almost pink and the eyes, which were rolling around a bit from the anesthesia, already looked better than they had in months.  I looked at my son and he looked at me and I could see him asking with his just barely-raised brows, "I thought you said she was going to look awful!"  Instead, she looked wonderful.  Not wonderful from a year ago, but wonderful for the last 6 weeks especially, and wonderful for the last six months for me.  The toxins and diseased colon had been removed.  Her color reflected her suddenly improving health - miraculously so.

So, this is yet another reason that we who have the invisible diseases also get a bit "upset," shall I say, when we are told, "you don't look sick."  Because really, we do.  We know in our hearts what we should look like and it isn't what we look like now.  Some of us can disguise it better than others and some of us are very good at it and some of us not so good at it.  But it really hurts that our doctors, who should know better, don't recognize the signs and instead rely on machines and tests.  

As long as they are able to get away with this, I fear that we will continue to get care that is less than what we deserve and we will continue to get thrown into that psychiatric wastebasket, a trend I painfully see coming back again, one I had hoped I'd never live to see again.

And on that cheerful note (!) I hope all are feeling their best, only better.  Ciao and paka!

Pain Management: The Unwanted Stepchild

This afternoon I started a completely different post on a completely different topic,  which developed into something that potentially affects all of us, not just those with CFIDS/CFS/ME and fibromyalgia, but in fact every human in this country, if not the entire industrialized world.  I thought to myself, "what the hey?  Let me go there first."  And the topic?  How to survive in a hospital and what our rights are.  Well, a bit more: as so many of you know me by now, there's always more!

Beginning in 2010, I had what turned into every parent's nightmare: that their "child," no matter the age, is found in a hospital and no one knows what is going on as that child gets sicker and sicker and, several times, comes close to dying.

Now there were a lot of reasons as to why I'd felt I knew my way around a hospital, not the least of which was that I've had more than my share of hospitalizations (there I go again with those pesky understatements!).  But you know, times change and they are not always for the better.

I get upset because we patients are getting an awful lot of doctor-switching and that is a big bugaboo of mine. If you recall the ophthalmologists vs. the optometrist experience in a previous post (described here) it's becoming a real problem.

You can now add to that list of doctor-switching, psychiatrists who are sleep and pain specialists who pose as neurologists, as I saw over and over again at "the major medical center" where my daughter had so many lengthy hospitalizations, complications, procedures and surgeries.  The chronic pain management people were always coming in and pretending they were anything but what they actually were: psychiatrists. To make things worse, they were always in some sort of "secret" war with the acute pain management people, perhaps the war actually causing the right hand to never fully know, nor understand, what the left was doing.

Oh how I came to hate the chronic pain people!  Why, you ask?  Because they would come in disguised as everything but what they purported to be.  They would very quickly give their names and use euphemisms. You'd (OK, I'd) spend half the time trying to get a good look at the regulated tag everyone wore around their neck but of course the darn thing would always be twisted around, completely unreadable. Finally I got the nerve to start asking for their cards as they left, which were given to me in a very put-upon manner, as if I were the unreasonable one, somehow conveniently forgetting that in the center's booklet given out to all, identification by everyone, including physicians, was clearly stated as a requirement - and in bold letters, if I'm not mistaken.   And I'd get upset, because upon receiving the card, I'd see that the person who I thought was a doctor from neurology or pain would be a nurse of some sort, though with a MA or PhD in some murky field I'd yet to have heard of, or a practitioner in a field I've yet to discover, or most often, a psychiatrist who said that he or she was from the neurology department, very much implying that they were neurologists, never ever mentioning psychiatry. The permutations were endless.

During a few hospitalizations, as the pain people came and went - many pain teams, never realizing a team had just been by, nor who the previous five teams that day had been, in addition to many other specialties - I had many questions each day, often during every shift, as someone was ALWAYS dropping the ball, usually many times during each shift.  At first I would say that there were huge cracks in the foundation.  Soon I learned that there was no foundation. Later yet, I learned that they couldn't even keep their vocabulary straight (the reason we all use words and those words have definitions, NO????)  because what they meant by ONE department was actually two departments and for all I know each of those departments were split into many parts.  But the misunderstandings, when I finally got to the point where I demanded answers, basically all went back to that they themselves never even understood the fact that they were using the same words but with different definitions. To illustrate what I mean, imagine the fictitious scenario I've described of a Brit and a Yank get-together about a problem.


-"Would you look in my boot?" asked the Brit.
-"You don't have a boot, you're wearing shoes but do you want..," answers/questions the Yank (who many indeed be a southerner, not a Yankee from the North!)
-"No, my boot," persists the Brit.
-"What???"
-"My car," patiently repeats the Brit, because all Brits are polite.
-"Your boot's in your car?" asks the Yank, puzzled, but decides, what the hey?  "Where did you put it?  What color is it?"
-Brit now looks looks at the Yank suspiciously and answers, "Why it's black!" wondering if all Yanks are so thick or if it's just this particular Yank.
-"Oh, OK," says the Yank, looking for a boot through the car's window and not seeing any boot of any color, wondering why in the world the Brit would want only one as boots do usually come in pairs.
-"What's wrong with you?  It's not IN the car!" cries the Brit, totally frustrated.
-"But you told me....!" answers the Yank, not understanding that a boot to Brits is what we Americans call the trunk - of a car, not an elephant, I hasten to add.

Had my daughter's life not been on the line and had she not been in such pain 24/7 for two years with very little relentlessness, remembering very little of the entire hospitalization periods, the aforementioned scenario would have been amusing.  But we're talking life and sanity here, not boots.

I was frustrated.  I wanted to know who all the people who were coming by actually were, with very loud voices, not using the "indoor voice" they had been taught in kindergarten if at no other time.  Did they think she was mentally handicapped?  Did they think she didn't speak English - and fall into that trap I most despise - if one doesn't understand the language simply yell loudly and the person will suddenly get it all magically!

As time went by, with each hospitalization becoming progressively more serious and more people coming around, I had many questions:

• Who were these people?
• Where were they from?
• What were their names?
• What was his/her position on the pecking order?
• Was that person's plan we'd just spent 20 minutes discussing the last word or would an attending over-ride the orders?  (It happened all the time!)
• Who was the attending?
• Would the attending stop by?
• Had they read over my daughter's chart before coming into her room?  (Answer: never!)

Now granted, the charts were long, due to all the hospitalizations and complications but "whoever" didn't need to run down those charts to some dark and damp basement.  They simply needed to look in the d*mned computer that the "major medical center" had invested many, many millions of dollars into.   Besides, one of the first things taught in medical school - after treating your nurses like gold - is to take a history and learn as much as you can from the chart. Rotations 101.

With each hospitalization, I'd come home steamed, exhausted not just physically, but emotionally as well.   As I lay in bed 24/7 trying to recover enough for the next hospital crisis in order to go with my daughter again in order to be by her side 24/7, I'd make plans as to how we could circumvent the problems we'd encountered. At every turn I wanted a positive experience, not a negative one.  The body needs and craves positivity in order to heal.  It cannot endure more tears, be they of frustration, be they of pain, be they of fear, whatever.  It was NOT a good situation, but short of going to the Mayo Clinic, we were in the only other place to be.  Besides, how much better, our thinking went, would the Mayo be if this place was just the same as the Mayo, down to so many of the doctors having trained there and vice versa?

I finally got to the point where I tried to write down the person's name in a book as they came in.  That didn't work very long as we had up to 5-12 doctors and their teams come by on some days.  Furthermore, the teams were constantly changing, especially once she got to the surgical building and not the medicine building.

My first break-through: embarrassing.  I'd left the room after who knows which doctor number had just "spoken" to my hubby, daughter, one son and me.  In order to not allow my daughter to see my tears when I saw that hubby's mouth had dropped open when he saw that things were much, much worse than anything I'd described, frustration-wise, I went to my usual "cry area" where no one could see me.  But in coming back a half hour later, with red eyes (and snot probably running down, not to mention the mascara!) two nurses at the huge hub, "everyone's station," asked if they could help. I told them, "no, thank you" several times, not trusting myself.  After a few of those "no's," however, I asked for the name and phone number of the CEO of the place, which they gave me and asked if they could help in any way.  Oh, they knew, trust me, they knew what the problem was.  And I think everyone regretted THAT question.

I then went into a very controlled but unstoppable tirade that only a mother who is scared to death of what is happening to her child is capable of.  I don't know if anyone remembers the old commercial, "When EF Hutton talks, people listen," and everyone in the commerical stops in mid-sentence, mid-step, etc.?

We had that moment.  Every attending at a computer, every Doc Jr., every nurse, every aide, everyone who was at the station, at least 30 souls, stopped mid-step, mid-sentence - you could almost hear the proverbial pin drop - and listened as I gave a synopsis, in a rather trembling but almost-soft voice, of all the problems we'd had and NAMED some of the people who had either lied to us, misrepresented themselves, given us misinformation, or gone back on a promise made.  One of my lines was that I was starting to feel as if we were all car sales people, buyers and sellers alike, each just trying to make the best bargain, in addition to a H*LL of a lot of other things which are a bit too personal to disclose here, but really popped open their eyes.  I really don't think anyone had ever spoken to them like that before, too intimidated.  In fact, many months later, nurses were stunned that I didn't fear anyone and asked me about it, wondered about it.  Why?  Because I feared the illness and nothing else mattered but that monster!

Whatever I said, it took at least a half hour: no one DARED stop me after they'd started it.  (Do I sound like I myself am in a school yard?  Maybe!)  "Baldy," my "name" for the doctor who'd caused my melt-down returned - and mind you, the name was not a disparagement - after all, I too am follicularly-challenged, but we always needed a way to distinguish one person from another in the crowds of people coming and going.   Everyone had staring at his back as I gave my "account" of all the pain my daughter was going through and he came back to the room and meekly discussed everything we had wanted just an hour before, needed and tried to do before the tirade.  Attitude change anyone???   And he must have ended up red-flagged her file somehow (writing "deranged mother" perhaps?) because the problems ceased for two days - bliss!  We could actually all concentrate on her illness.  It was all we needed and what my daughter was due.  And it lasted until she needed that emergency surgery.

And the emergency surgery highlights another aspect of this whole situation and this hits close to those of us with the DD.  Just as she was about to be sent home, yet again, my hubby called her attending from home (after I called sobbing to inform him of this latest development) and said that he simply would not allow her to come home.  By this point, only six weeks since that first day of my driving her to the ER ("Mom, are you SURE you're not going to crash the car?" - this despite it being only a 10-minute drive, but understandable because I hadn't driven in about ten years).   She'd been hospitalized around 5 times, then sent home, only to return back to the ER and a hospitalization a couple of days later.  

There was, hubby insisted to the attending, something deinitely wrong and they were going to find it because she could not continue to be a human yoyo and furthermore, we knew her warts and all (99% good, just a few tiny warts!) and one could count on her having a high pain threshold.  It was hubby's finest hour, in my eyes, especially because when a final test was run yet again for 20th or so time, and as I was actually starting to pack her bags for the ride home, the radiologist called up to the floor in a complete panic: THIS time they found a newly-formed perforation in the colon which had developed overnight and you can bet that at that point everyone started hopping as they prepared her as quickly as possible for the unexpected emergency surgery.  

And I do want to make it perfectly clear her surgeon was a genius, talented, kind, compassionate and what one could only pray for, checking on her twice a day every single day she was at the "major medical center," from the very first day, even as we all still held out hope that it would not develop into a surgical situation. This is definitely NOT willy-nilly doctor-bashing or hospital-bashing at all, simply presenting the way it is.

So, the reason for this tale, this painful rehash of what our daughter went through?  This was a situation that was cut and dry: you see a completely diseased colon and you could then deal with it.

However, we, those of us with the DD, with the invisible illnesses, show little.

And this treatment, which my daughter had to deal with along the entire way, even after surgeries and between surgeries, highlights how lightly the pain issues were taken. Instead of the true monster, that of her vicious atypical hybrid never-to-have-been-seen before Crohn's/ulcerative colitis, a real killer which even included a sudden bout of pancreatitis, the aspect of her health which got all the attention was pain.  Pain is EASY, folks!  It is known.  It is a matter of finding a doctor who has the chutzpah to make the calls.

And so, this is a very real and true example of how we patients must continue to insist on our rights, as well as expect the respect that the doctors listen to us - if we treat them with respect in return - and that we must know who that person we're dealing with is, what his role is, what his pecking order is.

My daughter was considered a drama queen because she came in with pain, a lot of it, brought on quickly, this despite the fact that she'd lost 45 pounds in 25 days - a documented part of her hospital record, not a part of an oral history given by her mom or dad.  She was in and out of hospitals several times before her wonderful local GI realized that this was serious business and transferred her in the middle of the night, using up favors to get her there, knowing exactly what would happen, in fact telling me what would happen as I pleaded with him that NO! this would and could not happen to my baby, please!  

To add to the pluses which we had in spades, and, which in the end well outnumbered for the most part the really, really bad luck she had along each stage of this monstrous illness, they even happened to have a major international conference on GI diseases there during one of her stays.  I later learned that her physicians curb-sided with their international colleagues in order to find out what others thought was going on - a case so unusual that no one had seen the kind of progression her sudden onset had taken, the atypical hybrid she was presenting.  It was a mess.  But the GI people worked it!

However, the pain management people, were, quite frankly, a joke.  Why?   First, because pain is simply not "sexy" in terms of bragging rights, nor in bringing in the money/funding.

Secondly, and perhaps most importantly, how does one see pain?  How does one assess an invisible illness?

At any rate, this is something I've been thinking about today.  OK, stewing about, now that I've written about it.  The wounds are barely scabs and I'm not sure they'll ever heal over because...heck my daughter almost died and we were all praying that she would somehow survive: on top of dealing with a lot poop that should never ever have been a problem, much less a problem from one hour to the next for the most part.

As someone tweeted not too long ago (there ARE good things about twitter: who knew?) - acute problems are well done in this country.  Unfortunately, chronic conditions, not so much.  This is something good to think about as well as good to keep in mind if it's your misfortune to end up in a hospital.  In the meanwhile, I hope these issues and thoughts help you further understand your rights as a patient.

And finally, I hope all are doing as well as can be, only better!  Ciao and paka!

Laughing and crying about beauty and medical centers...

The wedding dress bought at B.Altman's, 1976.

Laughter. It's sort of what I've always been "famous" for in my family.  But it was on Friday, August 13, 2010 that started me on my path to laughter which would make a world of difference in our family's life. We'd always laughed, but never under such trying circumstances, an understatement.

You see, my daughter spent many weeks in hospitals in the past year and a half, starting on that dreaded Friday the 13th, with many long hospitalizations.  It was absolutely the worst time in our family's life, bar none.  Not to put a damper on things, but we almost lost her, more than once, and are still in a state of shock, all of us trying to recover from the nightmare(s). It was a relatively rare disease and though we were fortunate enough to have had some of the best doctors in the country on her case, finally in a hospital that's ranked number two in the country for her illness, even those doctors were stumped, the ones at the medical center she was suddenly transferred to one night during her third local hospital stay in three weeks.  They, the world's experts, had never seen anything quite like what was happening to our daughter. It become so horrid that on one particular day I remember about twelve doctors coming by with their teams of residents and fellows - during her fourth hospitalization there, perhaps?  It was such a madhouse that there was a backlog...the docs and their teams were lining up in the hallway, awaiting their turns. Never had I seen a sight like that before, or since, anywhere!

I can laugh about that day now, but at the time it was very frustrating, scary and maddening.  My daughter was so ill that she remembers almost none of this, but when she could talk to where we could actually understand her, she was definitely not the sweetest thing to come along.  She'd always been healthy and perhaps did not have the skills needed to endure the repeated tests every single day, twice daily, swollen arms and hands from so many "sticks," the weight loss of 45 pounds in just 25 days because she couldn't even swallow water.  On the other hand, who does have those skills?  Her pain threshold was supreme, something that her pain management people woefully did not get at all. Having been in the pain field as a patient and knowing more than a bit about it myself, as well as having access informally to very well-informed medical sources to check my supposed knowledge, it'll be a long time before I can forgive some of the docs involved in her case, as well as more than a bit of misinformation, on every one of her seven hospitalizations in that medical center alone.

But my reason for writing about this?  Well, I'm trying to make my posts shorter so I'll come back to other reasons in the future.  I'll just make one, (or two?), observation at the moment.  And that is...

First impressions, added with laughter and inside jokes, count!!!  I cannot believe the difference in "attitude" I received by staff, be they nurses, aides, "junior docs" or attendings, by the way I looked!  I realized this quite early on and it was maddening, but like everything else at the "medical center," it was trying to play the game - of Life! - to your best advantage and for extremely high stakes.

First of all, let me say that there was no one more surprised than myself that suddenly I had this energy to stay with my daughter every single day she was in the hospital, not leaving her side 24/7 unless another family member was there to spell me - her dad or one of her two wonderful brothers. It was a complete family affair, I'm proud to say.  If they weren't able to be there, I'd pick someone and put them on notice that I was making that person responsible for the minutes I was away.  In all of this insanity, my maternal instincts kicked in full-speed ahead and an extremely productive and dangerous lioness came out.... A crazy one at times.  I'm still angry with some of the physicians whom I had extreme arguments with...who will, most probably, forever be on my "poop" list.  I'm a mom...what can I say?  Worse, I'm a mom with an education, learning skills, an inability to be too cowered by authority and armed with excellent sources of medical information, often better than the ones at the medical center.  Unlike most, I was not scared of anyone or anything but my daughter's disease.

On the other end of the spectrum, there are the incredible physicians, and one surgeon in particular, who literally saved her life and then gave it back to her in a way that is enabling her, as well as the rest of the family, to have a life definitely worth living and enjoying.  I thank every guardian angel, human or otherwise, for having been there and who continue to help our entire family.  God's best idea: Guardian Angels - after daughters, that is.

But back to first impressions!

I've always known that the way you look affects the way people treat you.  It's a fact of life, sorry to say.  I first tested this at B. Altman's, one of my favorite 5th Avenue department stores, back in our "salad days" with my new hubby.  One afternoon I happened to be browsing, looking at coats specifically, and not one sales person came to ask if she could help.  Usually, you get eons of salespeople when you just want to be left alone to actually think.

Walking back to our apartment (the 50-cent bus fare was just too much for our budget) I started dissecting the no-sales-lady experience.  By the time I got home, I realized the problem.  I didn't look like a bum but I did look like a student who had no way of affording anything in the store.  Everything about me that day screamed "student": the pulled back hair in a barrette, the very little makeup, the jeans.  Understand, this was the mid-70's - a time when many restaurants in New York City wouldn't allow a lady wearing an elegant pantsuit to enter their premises, so imagine the impression of jeans in this very "establishment" store!

I was a bit heated about this and just couldn't let things lie.  The following day, I rolled my hair (no blow dryers available yet, nor any good hair products), put on my makeup very carefully and especially elegantly (though how elegant can a 24-year old be?), my nicest "outfit" with the buttery suede jacket and the beautiful brown high heeled boots I'd splurged on in Rome (yes, Italy...it was a chartered flight!) and faster than you can say "prego!" I had, at the very least, five sales ladies come up to me, immediately, in the very department I'd browsed the day before, each one trying to tempt me with other coats I might not have noticed.

That lesson has always remained with me.  I tend to have a weight problem due to this DD.  In my better times my weight is good.  I'm not thrilled with it, but I can live with it.  But I always say you can tell how I'm doing by my weight.  In my worse times, my weight starts getting up there.  And believe me: people, across the board, in every aspect of your life, treat you better when you're thin than when you're heavy...from the person at the supermarket to doctors.

So, when my precious daughter got so sick, you better believe I forced myself to dress in a friendly fashion, even going so far as wearing different cool boots or a cute handbag or fun watch which inevitably I'd get a reaction to, making the interaction that much more human and friendly, leading, of course, then to laughter, often breaking the tension.  And that was one of my prime reasons for being there.  I tried to make my daughter laugh as much as she could handle, even if it was at my expense or me playing the fool.

I learned to leave my daughter's side about every 24-48 hours when I started to get a bit ripe and in twenty minutes I could get to the hotel room, shower, do my hair, put on vast amounts of beauty products to get the new no-makeup look, pat just the tiniest bit of lovely scent on me and rush back to her room.  Twenty minutes!  I can't even wash my face in twenty minutes on a normal day, but my daughter dying gave me strength that I truly believe Clarence (remember, I recently named my guardian angel?) and God gave me all those weeks and months.

But I'd like to add that there were a few days when I looked far worse than anything any cat could drag in.  Those were the days that I was not noticed, totally ignored and not made a part of the discussion of what was happening.  Coincidence?  I think not.

So, my advice to all:  first, everyone who is ever in a hospital needs a health-advocate. This is PRIME!  Mistakes are made, staff gets overloaded, "junior docs" don't read charts, attending's can all too often be aloof, arrogant, or worse, clueless, especially in a place so large where the left hand doesn't know what the right hand is doing.  You absolutely need someone there at all times to help your loved one get through the whole process - hopefully, alive!  (And yes, I do want to have a long and in-depth discussion with the CEO of the medical center - not to be too hyped up on myself, but I do think he could learn a few truths about what is really going on in that establishment. Much good, yes, but there is bad too: very bad.)

Secondly, I've forgiven B. Altman's for the way they treated me that day I wore jeans :). I mourn the day they had to close that wonderful institution.  After all, I even bought my wedding dress there...and it was a very classy experience, certainly too classy for this young girl on a very limited budget.

(And if anyone wants to experience a great read of B. Altman's in their heyday, there's a wonderful book by Adriana Trigiani, Lucia, Lucia!, a fun and sweet novel which describes New York in 1950, living down in "The Village," and working in the couture department of B. Altman's.  Any guys out there may want to give the book a pass, but it's a bit of magic for the gals out there.  Not too off-topic, am I?)

But the biggest advice I can give here: keep up your sense of humor. Each person, from the transport people who would wheel my baby in her bed down for tests, to the nurse's aide who got my daughter addicted to some sort of banana Popsicles, to the night receptionist who loved to joke with me about our mutual love of the smell of new leather, to the Ukrainian nurse who held my hands in those first days when I knew absolutely nothing about this illness - had never even heard of this darn thing - when we joked about whether Russians really couldn't understand Ukrainian or were they pulling our legs? (as we spoke in Russian and not in Ukrainian), to the EEG technician who talked to me about the Russian Orthodox church nearby (that I never, regretfully, got to) and then went through our six degrees of separation to see who we might both know in the nation-wide Russian-American community, to the Romanian aide who would try to get my daughter to do all that walking - and talking about the foods she taught her daughter to make, to the Romanian cleaning lady who told me that my smile was too beautiful to sacrifice for tears...everything was made more endurable with humor and laughter.

Well, that and a bit of mascara.