In the ER Again: the Mystery Continues

No...it just comes from CFIDS now! 

I was on such a wonderful roll last week with finally getting back in action and writing posts.  But after this weekend, I feel as if getting back to square one would be an improvement on things.  Always first with the bad news in order to get it out of the way: I ended up in the ER on Saturday for multiple problems. The good news: I didn't need to go there in an ambulance!  Glory be: I almost feel as if I were letting the neighbors down by not having provided them with some entertainment - but then I remember we all have cable.   

Incredibly, the hospital staff was polite, concerned and ran many tests.  Perhaps it helped that my normal BP at home on bed rest runs a high of up to 90/70 but in pain at 120/80 (as documented by the hospital computer, yay!) yet in the ER it was a whopping 151/90.  I was immediately given medication for nausea. When I got to the point that my pain was so severe that I couldn't hold back the tears and asked for pain medication, they  immediately gave me IV pain meds which were documented as working.  Unfortunately, for the first time ever, the Demerol didn't touch the pain. A couple of hours later, another dose was given and I felt relief for a moment then nothing. This scared me. I don't like to think that I'm getting worse, overall, in my CFS/ME saga. 

After much testing we were able to establish that I wasn't dying - or not anytime soon. We were lucky on the one hand to find "nothing."  However, we were still stuck with most of the same symptoms, some getting worse, some remaining the same, and only one better but that's because I'm on complete and total bed rest. 

Ah, but I'm missing the "why" I went to the ER in the first place!  How foolish of me. OK, now get this. I do hope those of you not ill with Chronic Fatigue Syndrome and/or fibromyalgia are sitting down and those of you who are ill, are lying down.  We don't want anyone passing out because of my earth-shattering news.  (Yes, I do hope that you know this is meant to be humorous and not a case of being totally self-absorbed!)  So, drums and trumpets, please!

I got so bloated and swollen that I was afraid I was "getting" anasarca again. Those of you not familiar with the term, don't feel badly. I think you really only know the term if  you, or a close loved one, has had it. Even most of the staff at the hospital weren't familiar with the term and I had to keep repeating the word as I was asked, "Ana-what?"  

Basically, anasarca is generalized massive edema, a  fluid build-up in the tissues. It differs from regular edema in that the person gets extremely swollen all over.  It's also most common in patients with heart failure, renal failure and those who are extremely ill. 

Yeah, not fun and yeah, a bit scary - especially when I was told that I had to get two blood transfusions a couple of years ago.  There was fluid around all my vital organs: the heart, the lungs and so forth - pretty heady stuff.  I'd blown up like the Pillsbury Doughboy in less than three days, putting on 50 lbs in that amount of time and wouldn't stop accumulating fluid, on death's door, literally, as all my organs started to shut down. However, after the transfusions, it was quickly under control and I had water leaking out of every part of me that can leak, for months - including my ears.

He was much cuter than me!

Well, I've been swollen and bloated.  I actually took pictures of my feet but they are just too gross to put up. (See, I do have some self-restraint!)  In fact, I couldn't find anything in the closet that would fit, finally hauling out a long dress which was all stretch, so tight it made me look like a cheap hooker.  When I tried to find shoes hubs suggested, "just put your Uggs on!" and I croaked out "are you nuts?"  After trying on about ten pairs of shoes (how I wish I were exaggerating) I went with the Uggs in the back of the closet.  Hubs had to haul them out himself since my swollen body couldn't do much bending and we had trouble getting those on! In the ER I was so embarrassed that I told the doctor that I wasn't actually crazy - that Uggs were created in Australia so that those on the sandy beaches of Sydney would be more comfortable playing volleyball.  She looked at me like I was nuts - and who could blame her?  I don't think her opinion of me changed much when I asked if her last name was Hungarian.  Vhaaaaattt, folks?  It's a legitimate question.  I like to know these things. I'm always curious.

Back to the why I was there. I was so happy that someone finally knew what anasarca was.  That made the doc OK in my book.  My other symptoms were heavy, profuse sweating - like turning-off-the-shower-before-the-towel wet.  A migraine yet again.  And great numbness in my left side affecting ear down through arms and hands, the left leg and foot, getting worse every day.  An EKG was run, blood taken, urine analysis, x-ray ... all of it. Nothing was found to explain the symptoms, though much was ruled out.

So, this was the bad news in the sense that I was stuck without a diagnosis, but it was nonetheless reassuring in the sense that an ER is there to rule out the stuff that will make you drop dead immediately.  (Not too blunt, am I?) The stuff that is chronic really should be explored by a physician who knows you and if he can't find out what's wrong, then he sends you on to a specialist. That's how the system works and as long as everyone is playing by the rules, I'm fine.  I was greatly relieved that I didn't have pneumonia. (Whoops: I didn't mention the congestion, etc., did I?  Well, too much going on!)  I was relieved I wasn't in the midst of a heart attack.  I may have seemed like a hypochondriac but that episode of having pneumonia for two months last year and discovering it only because of a routine chest x-ray before surgery kind of made me realize that I needed to get to the bottom of things sooner rather than later. 

So, where do we stand now?  My rheumy thinks the sweating may be something "subtle."  I wanted to know: in what world is sweating so profusely-that-you're-pouring-down-water-and-can't-move-in-bed-because-you're-so frozen and feel as-if-your-guts-are-falling-out and finally resort to pain pills for something that isn't pain per se, but is just feeling like you-might-die-and-very-much-wish-you-could, be normal or "subtle."   Well, it may be that I'm in withdrawal from the Cybalta and/or the trazadone. 

Yes, it was my decision to get off the Cybalta without tapering. (See this post for more on my Cymbalta adventure.)  We all agreed that I hadn't been on it long enough to have things get too tough - though due to weird circumstances I had taken it longer than I wanted. My doctors observed that I don't appear to have an "addictive personality."  That is, I've never had any withdrawal from any other medications over the past 26 years - I'd started on medications only after I'd been officially diagnosed with CFIDS and fibromyalgia, therefore I write 25 and not 37 years. And so after discussing the mechanisms of how Cymbalta and trazadone tapering off works differently form the way nicotine and opioid withdrawal might work, if I felt OK with stopping suddenly, to go for it. I don't like to draw things out and went off cigarettes cold turkey without any problems after smoking for a few years.  (Do I sound defensive if I say do you have any idea how much reading and writing is done as an English literature student?  LOL!)  I took up smoking once my kids were older and then again stopped cold turkey almost three years ago and had no problems - other than more pain in general that still hasn't stopped.  But the smoking is another story.  I've never had opioid withdrawal at all, knock on wood.

At any rate, yesterday was truly hell and I hope that I'm over the worst of it.  I slept last night after a dreadfully long day full of severe nausea, lessening numbness, moderate migraine and  sweats out the wazoo - my bedding was more drenched than ever, something I thought to be impossible.

My rheumy said that we can all hope that it's withdrawal symptoms and not anything more "serious," so I'll hold out for a bit longer.  Hallelujah for the no sweats upon waking up this morning, just a bit this morning with sweats every once in a while which I can take.  The shaking is gone for the most part.  No migraine, only a bit of a headache that I can tolerate.  My hands are only slightly swollen. Yeehaw!

I also want to know in what world is opioids considered addictive and Cymbalta and other such medications not? But that's for another post.

Do you agree with my rheumy and think what I'm going through now might be withdrawal from the Cymbalta and trazadone?  

As always, hoping everyone out there is feeling their best, only better!  Ciao and paka!



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Friday Tidbits: How Pain Meds Work, Pt 2

Hippocrates: "First Do No Harm..."

I suffer with a chronic painful condition, but I am not alone.  It's a shocking statistic that a third of the world's population suffers from persistent or recurrent pain.  It's been estimated that this costs the American people alone approximately a hundred billion dollars annually in healthcare, compensation and litigation.  And yet, despite the enormity of this problem, there is much that needs to be understood about chronic pain. 

First, let me say that "chronic" pain differs from "actute" pain because different mechanisms are in play. There are other types of pain, such as neuropathic pain, which exists without any obvious trigger, such as you would find in acute pain, caused, for example, by a fall or blow to a part of the body.  However, even acute pain is not completely understood.  For example, we understand that when a body part is injured or about to be injured, pain signals travel from receptors in the skin or muscle, which are known as "nociceptors."  (Hang in there, people!  We'll shortly be getting into some heavy science here, but fear not, I'll try to be your guide here as best I can!  Besides, if *I* can understand it - sort of - so can you!)

With acute pain, there are different kinds of nociceptors which are associated with different kinds of nerve fibers.  One type is called the A-fiber.  This nerve fiber has a very thin coating of a protective chemical called myelin - famous to us because of it's role in MS.  This fiber, when activated, creates a fast, piecing kind of pain. 

On the other hand, there's a different fiber called the C-fiber, which has NO myelin on it, and it transmits a slower, burning type of pain. (We're still dealing with "acute" pain here!)  So far, TWO classes of C-fibers have been found.  One class contains a range of neuropeptides - neurotransmitters, if you will - including Substance P and calcitonin gene-related peptide (again, all neurotransmitters).   It also expresses a receptor for another important chemical called "nerve growth factor," which also helps in the pain transmission process (not good, in other words!).

A second C-fiber class contains fewer neuropeptides (neurotransmitters) and mediates a different type of pain than the class described above.  Once the pain is transmitted to the thalamus and other parts of the brain, the pain signals are interpreted and modulated.  Some people have the ability to block out some pain signals better than other people. There are actually cells in the spinal cord which prevent pain signals from reaching the brain. They are called "inhibitory interneurons."  Some people have a lot of these cells and are able to feel less pain than others. This may be why there is a wide variation in how people register pain and may actually explain the differences in pain threshold from person to person.  (Believe it or not, but this is definitely the Cliff Notes version!)

Chronic pain differs from acute pain in that the patient has had the pain for a relatively long period of time (authors disagree on the exact length of time but most agree it is between 3 and 6 months).  For chronic pain to persist, there does not need to be a series of inciting facts such are repeated traumas.  Chronic pain involves a fundamental change in the nervous system including neuroplasticity, which is described below. The A-fibers and the C-fibers are not major players here.  So, why go on and on so much about the acute pain?  It's nice to understand what you DON'T have.  I always feel that knowledge is power.

Not surprisingly, there does seem to be some confusion as to why certain medications are used for certain pain states as opposed to other types of medications.  It's widely accepted by the medical community that although morphine-type narcotics can be very useful in acute and in some chronic pain states, they tend to be not very effective in neuropathic pain.  Neuropathic pain comes about when there is some underlying medical problem such as diabetes or shingles.  In neuropathic pain, the pain is not useful in the sense that it doesn't warn you about imminent tissue injury, such as putting your hand on a hot stove.  It's even more complicated than that.  The nervous system itself is sending weird signals like burning and even itching to the brain.  Many patients with neuropathic pain receive anti-depressant medications and/or anti-epileptics to help control the pain.  Some researchers believe that patients who have neuropathic pain actually have fewer opioid receptors expressed on the nociceptors and spinal neurons (nerve cells).  Whatever the reason, this pain is difficult to treat.

As if things couldn't get any more complicated, one must not forget the entity known as "phantom limb pain," which is due to actual changes in the brain itself.  The patient feels pain in a limb that is no longer there.

Note: This is an example of brain neuroplasticisy where the brain actually changes in how it processes and registers pain.  The pain of many fibro patients is believed to be due to this phenomenon which may help explain why fibro can be treated but not cured.  The brain, unfortunately, has actually changed, as can be seen in brain-imagining studies.

This may also explain why different types of pains in the same person responds differently to different types of medication.  For example, a person with migraine headaches who also suffers from back pain may need more than one type of med to treat both problems even though one might think pain is pain and that both conditions would be helped by a pain medication like morphine.  

Quite the opposite is true. The migraine type of pain tends to respond to a family of drugs called "triptans." Here is a type of pain which is pretty much understood!  We now have "triptans" which include Imitrex, Frova, and Axert.   Triptans are thought to work on the brain circulation to make it more normal so the headaches can be treated effectively.  However, these medications don't work on back pain, which is typically mediated through nociceptors and neurotransmitters like Substance P.

I so wish that doctors and the medical community could appreciate this well-understood part of medicine so much better.  For example, I was once hospitalized for some sort of problem - who can even remember why or what at this time?  YOU think YOU need a scorecard in trying to keep things straight.  Here's a bit of a secret: *I* need a darn scorecard even more!

As an example, though I'll explain the circumstances at another time, under "humorous events": Suffice it to say that during this particular hospitalization I needed pain medication for my regular fibro and CFIDS/CFS/ME issues, which I was given.  However, I also had huge pain in my back which wasn't helped by my "usual" meds.  This was pain that resulted from the lack of Human Growth Hormone (HGH).  This lack of the highly-regulated HGH  (which we couldn't even pay for it ourselves) caused my spine to become eroded and discs to deteriorate, while we couldn't get the HGH for two years, by any means tried and despite the fact that I passed the "gold standard" test with flying colors!

Moving on, the arrogant nurse who came to my room felt that I didn't need the added pain medication (already ordered by my doctor!) and promptly gave me a lecture on how serious it was that I was in the hospital for detoxing!  Excuse me?  Shut your mouth first and secondly, follow doctor's orders!  Furthermore, reading my chart wouldn't be amiss as well!  Hubs got a middle of the night call from me blubbering that I needed to go home NOW, my doctors who knew me and my case inside and out were displeased to be called by a hospital staff member who felt he should be some sort of "missionary" for the misguided, moi.  Said missionary could not begin to understand that different meds work on different nerve paths and that the problems I was having was a perfect example of that.  Being a mere patient, he also didn't want any "excuses" from me when I tried to explain how pain meds work, and gave me a lecture about that as well!  

I'm only grateful that this was in a well-regarded local hospital where the bureaucracy was little and not in a "major medical center" where they claim to know much but are sorely lacking in the non-sexy departments which - interestingly enough - don't bring in the big bucks when it comes to fund-raising.  Nor DO they care, as I found out through the many lengthy hospitalizations my daughter had to endure.

So there you have it, a bit more of how pain meds work or don't work.  I hope this helps - especially since I'm not able to write up these sorts of medically sophisticated posts too often!  They are killers!  (Joke!)

As always, wishing that everyone is feeling their best, only better.  Ciao and paka.


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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!

When Will I Be Strong?

Putrajaya, Malaysia, all beautiful at night....

I do have to laugh at myself. You see, as soon as I make a list of things to do, I am doomed. Doomed, I tell you!  Nothing ever goes according to plan.  And if you recall, I actually made a list the other day on how I would start to work my way back to feeling better, fool that I am!

These last few days have been particularly bad days, perhaps the worst I've had in years, bar the first couple of weeks after my November/December surgeries.  I know part of it is the Herxheimer-type reaction: I'm having a huge reactivation of whatever virus caused this stupid illness in the first place, a vicious full-blast reactivation most likely caused by the stress of my trip, and it is, paradoxically, getting worse as I try to get myself back on track to the place where I feel my best.  That's not asking for much, except it obviously IS in my case.  It's all coming at a price.  I feel as if what I'm going through is much like what I've read it must be like when a drug addict tries to detox.  I want to crawl out of my skin.   At other moments, I feel as if my skin is turning inside out.

All of this has been further complicated by the fact that when I get too sick and am in too much pain, I forget that I need to take my pain meds. There's always a price to be paid if the pain gets to be too bad, when you end up "chasing" the pain.  This is so well known and understood that it was THE reason I was such a ferocious lioness during the weeks my daughter was at the "major medical center," so often and for so long: the pain she experienced was off the charts and I knew first-hand how hard it would be to get back to a place of tolerable pain if and when she was given her pain meds even ten minutes late, much less a half hour to an hour late.

So, it's ironic that I forget to take pain meds when I most need them.  Usually, this isn't a problem because hubby comes home, sees me and knows I need to take my pain meds, or my daughter will call, hear something off in my voice, and immediately becomes all bossy-like, instructing me to take my pain meds.  My doctor gets frustrated with me that I don't take my pain meds as often as I should. Deep down inside, I think that a part of me feels that when I take pain meds, I'm accepting defeat, a very wrong way to think, I know!

At any rate, there were entirely too many days in Malaysia when I didn't take my pain meds, after hubby flew home, because I was in too much pain to realize I needed them and then during the various flights heading home it was just so much easier to skip too many doses.  All of which is to say, my body has been chasing the pain big time, and obviously too long.

I need to find/remember all in my arsenal for improving. I had forgotten, for example, all about my nutritional IV's and need to go that route for a while. I need to remember to take my AM magnesium (not in the PM as it counteracts the Neurontin). I need to work harder at trying to establish a sleep pattern, which is also ironic: I'm just too sick right now to work so hard at falling asleep.  To me, sleep is major labor.  I don't have it in me to work that hard at the moment, but I know I must.

Now gee, this was a cheerful post! So, if you've made it this far into my complaints, here are three rather random tips that work for me that I think can help anyone:

1. Consider using an air cleaner in your room. I have been using these for years - but of course had forgotten about them in the last couple of years of our familial insanity. I need to dig one out, pronto. The unit I like to use in my bedroom is portable and I can immediately feel that I can BREATHE. It also cuts down on environmental pollutants, as well as dust, etc.  (The filter is absolutely disgusting when you change it.)
2. Check out your Vitamin B-12 level as well as your magnesium levels. With the magnesium, make sure your doctor uses the RBC (Red Blood Cell) test.  I'll be discussing this in future posts.
3. Get yourself a notebook for lists. Just because I've been struck with the "list curse" doesn't mean the rest of the world has been!

And here's to all feeling the best they can be, only better!  Ciao and paka!

My favorite of all the air cleaners in the house, the Sun-Pure.