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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How Pain Meds Work

Oh to be young and pain free...

With my Friday Tidbit post discussing fibromyalgia, there were three comments, all of which addressed very important points regarding pain medication and the unusual effects that these medications can have on different people.  It was interesting to see that all three readers who commented on the post stressed that pain management must be individualized and that there is no cookbook for it.  Yippee!  I was so happy to see that we all seem to be on the same page, so to speak: no rigid thinking and no one-size-fits-all approach. Hallelujah!  This was definitely music to my ears. (Excuse me while a shed a few tears that a) people are reading my blog; b) comments were made; and c) we are all basically on the same page!)  

However, there were a few points which I thought needed to be addressed and to answer them in the comments would be cumbersome as well as somewhat of a waste: these are points that I have wanted to address, or points I did address long ago, and deserve a second look, with this being a good chance to repeat some of them now.  See this link for one discussion, the "pain contract."

The first point I want to make has to do with my own experience.  Many years ago, my pain had become intolerable and the "gold standard" pain medications had no effect.  Fortunately, two things were on my side: first, my doctor had the insight and the courage to persevere and not give up on me.   

Second, he went so far as to admit me to the hospital to try to get the pain under control in a safe environment where I could be monitored.  That was a bold move even back then. Unfortunately, in today's state of medical care, this would be almost impossible, as I've stated in at least two posts in the past.  

As I wrote - and paraphrase to suit the subject at hand: 

My first GP, bless his heart, admitted me to the hospital (back in the late '80's) and was determined that "we" would find a pain med that actually works.... During that stay I was given a pump with a button to press every time I needed a hit of pain medication.  When the pain level was at least an 8, if I'm not mistaken, my finger would hit that sucker.  Though I didn't realize it at the time (how could I when I kept looking at walls and ceilings and wondering how I could pull off climbing them: desperate times and all!) the reading of how many times I hit that button showed how much the medication we were trying was actually working and when it looked like it was a no-go, we'd move on to the next med.  Morphine, as with every other pain med tried, made no difference. I was so afraid that there would be nothing that would help but my doctors kept reassuring me that something would be found.  And after about a week that "miracle" happened.  Once I was given Demerol, a medication I'd never even heard of at the time, MY magic bullet was found.

Yes, different pain medications were tried and were found to be totally ineffective, even morphine.  Now, understand that in the pain management field, morphine is considered the standard by which other pain meds are measured.  In fact, the term, "morphine equivalents," refers to the strength of different pain medications.  In my case, we discovered that the only medication at that time which could control my migraines (body migraines as well as head migraines) and my fibro pain was Demerol (generic name, "meperidine").  Unfortunately, many doctors and entire medical centers frown on the use of this medication yet it works for me and, without it, I would have even more problems functioning than I do already.  

Consequently, over the years I've often asked, what is the reason for this negative attitude toward meperidine?  Some pain specialists who keep opioids as options in their arsenal have told me it's because Demerol's by-product, normeperidine, has psycho-active properties. That is, it works on the brain and can change your mood. (Really? could have fooled me!)   Furthermore, in some cases, it can build up in the system and become toxic.  In taking this medication for at least 20 years, some years so bad that I would count every single pill every day, several times a day, other years when I was in better shape, needing the medication hardly at all, this has never happened with me.  I've never ever felt any "euphoria."   All I've ever felt with Demerol has been relief from pain that is worse than what I experienced when giving birth to three 10-lb babies, two of whom were "back labor."  Note: our Lamaze instructor said, "all bets are off if you go into 'back labor.'"  Aren't I the lucky gal?  

Considering how much help Demerol has been over the years (understatement!), I simply cannot understand why there is such a bias against this medication.  Perhaps it is because to treat patients with Demerol requires a great deal of skill - and TIME, which some doctors don't wish or can't afford to spend with their patients.  I am required to see my doctor each time I need a refill, which is essentially every month and each visit inevitably turns into at least a one-hour session of talk about just the most important things going on with me: there's never enough time for everything.  The question then becomes: how many doctors can afford such complicated cases as myself?  How many doctors are willing to take on such a time-consuming and headache-inducing patient such as myself? 

But getting back to the question of opioids, there's another issue at hand:  I personally have never experienced it, but there is a phenomenon called opioid-induced hyperalgesia.  This is where increasing doses of pain medication can actually cause increased pain instead of decreased pain.  The only way to know if someone is suffering from this problem is to cut the dose of the painkiller and observe what happens.  If the patient feels less pain after taking the decreased pain medication, then this is then an example of opioid-induced hyperalgesia.  Ideally, this should be done in a hospital where a patient can be monitored and protected.  Furthermore, we now know that there is more than one type of opioid receptor in the brain which may explain why some patients respond well to one type of pain med but not to another. (Another post, my lovelies, another post!)

All of this discussion about opioids is not just of theoretical interest.  As healthcare costs become more and more of an issue, there is a tendency on the part of 3rd-party payers to restrict the number of medications on their formularies, groups of medications that are "preferred" by the third-party payers. This is purely a financial ploy and not for legitimate medical reasons.  To make things even more confusing is that a patient may become tolerant to a particular painkiller and may need to be switched to a different painkiller for the pain to be brought under control.  This is known as "opioid rotation."

Therefore, as was the case with one commenter, the painkiller Vicodin (a combination of hydrocodone and tylenol) may not work to ease pain and may actually have caused the pain to increase.  This is a classic example of opioid-induced hyperalgesia.  

Although the exact mechanism is not known, one may be able to speculate as to the reason.  For example, before medications come to market, they (obviously) need to be approved by the FDA.  The FDA reviews clinical trials where the medication was tested on thousands of patients.  Typically, these subjects are of European background with almost no Native Americans and other minority groups.  My rheumy/immunologist/pain specialist told me that whenever one of his patients has an unusual reaction to a medication or is extremely sensitive to even a small dose of medication, the search for non-European ancestry usually provides positive results.  Yes, we are very similar but we are also very different from each other.  Look at peanut butter, for heaven's sake!  It's part of the lunch of choice for most American children, but look at what can happen to that tiny fraction of children who are allergic to peanut butter!  Yet another example: I can't live without animal protein whereas my own mother cannot tolerate most animal protein. Just saying!  (Especially since my mom cannot understand nor accept the fact that I absolutely need animal protein, which she considers to be "poison" - and worse!)

Another commenter reported that after long-term use, the pain medication simply stopped working.  (I do love the comments!  Thanks!)  

Likely, this is an example of "opioid tolerance."  Instead of giving up on the painkillers altogether,  the doctor might want to try rotating the pain medications.  So, for example, if hydrocodone stops working, perhaps a med like oxycodone (in Percocet) or hydro-morphone (Dilaudid) might be effective.  It's important to note (I'm so tempted to put this all into bold capital letters but will restrain myself): when a patient claims that the pain medications stop working that does not mean he/she is drug-seeking or has a psychiatric problem.  It is most likely that he/she may have simply become tolerant to that medication and needs to have his/her situation re-evaluated.  

Pain management is complicated and simple, all at the same time.  It's complicated because there IS no one-size-fits-all and it is a very time-intensive type of care for the physician.  I know that I'm biased.  However, not allowing a patient to be hospitalized in order to find the right medications that actually works is frankly insane and criminal in my book.  When I was hospitalized in order to find the right "pain med" back in the late '80's, it was a very gutsy move, though in the long-run it helped lower my hospitalization bills to my insurance company.  It took only a week, perhaps less, to find the pain medication that worked for me.  As I've stated in other posts, today to find the right medication would take months because the patient needs to keep running back and forth to the doctor's office.  

Furthermore, in giving me the medication through an IV pump, we could go through the various medications at a faster rate: if it didn't work within 8-12 hours, it was on to the next med.  In pill form, you'd need days to establish what worked and what didn't and you'd also need to take so many other factors into the equation: were toddlers at home throwing off results?  Were running errands factored into the medication not working? Was the music from your neighbor's house driving you nuts and thus perhaps throwing things off? (JOKE?)  I mean the list is literally quite endless.  And once we hit the right med, again, it saved the insurance company a lot of money because I had fewer hospitalizations.  In other words, everyone won.  Ok, back to topic at hand.... I do tend to get carried away, I KNOW!  Imagine how much the doctor vetting this piece is loving my asides!  (What?  You thought I would just throw this info out into the world without having all this stuff vetted?  I may only be a blogger, but I'm trying to be as responsible as possible!)

On the other hand, pain management is a relatively easy field in that so much is known about the way many of these pain medications do work.  For example, one area that we know a little bit about is: why does codeine not work at all for some patients?  Codeine's a pretty powerful pain med and yet some patients say that simple Tylenol helps more than the schedule 3 codeine. What's up with that?

It turns out that codeine is not active on its own but rather needs to get changed to morphine in the body for it to be effective.  About a tenth of the population lacks this conversion ability due to a particular gene not being present.  How many doctors know this?  It's hard to say.  The literature is out there but not all doctors keep up with it, due to many reasons, including the time-factor or specialization factor.  This is precisely why I think that if you have a real pain problem that is (almost) intolerable, it is wise to see an expert in the field. And might I add that if you're a praying type of person, pray for that doctor with your whole heart and soul because they ARE difficult to find!  My GP, etc, all take up quite a bit of my prayer allotment time! I do NOT want to have to start finding a new doctor when my almost-retirement age docs start closing their practices! Talk about the stuff of nightmares...

Pain management:  there is so much more to know and to be uncovered in this complicated and fascinating field of study.  

This is, at the very least, only one aspect of pain management and the way pain meds work.  I'd like to get into much more, but it's simply too much for a single post and will be addressed in a future one.  Therefore, as they say, stay tuned!

With that, as always, I hope all are feeling their best, only better.  Ciao and paka!


(Did you enjoy this post or find it helpful?  Subscribe to my blog and you'll never miss another post again! It's easy!  See the directions in the 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 that info, so that's a firm - and easy - promise!)

Friday Tidbits: Blubbering Idiot

Oh heaven help us all, it's Friday and that means "Friday Tidbits," no matter how I feel.  I have a real bugaboo about making promises and not keeping them.  At any rate, I finally had the energy to look at my Facebook page yesterday to let y'all know that I'm still around but that it's been a rough patch I've been going through. And the holidays aren't even here yet!  (Irene bangs her head against the desk surface.)  How DOES the CFIDS/ME/CFS and fibro patient survive the season?  I'm not entirely sure.

But I do have a confession to make about myself: I don't allow myself to cry, though that changed this past week.  I just don't allow myself that luxury.  I do cry every once in a while, especially when I'm really angry about something (which just makes me angrier and then I cry harder, of course) but for the most part I try not to allow myself tears when it comes to being ill.  My feeling is that if I start, how will I stop the flood?  Besides, it feels so manipulative.

I'm pretty strict about the policy too.  In fact, I remember that when the kids were around the 10-years-old mark I'd taken them off to a movie for survival purposes one August day before school started.  Now August truly has the most horrid movies.  I think it's because Hollywood realizes that it's the only time that they can hoist off their stinkers upon poor parents who are desperate for a couple of hours of keeping the kids occupied.  Hollywood's not stupid: it realizes that parents have done every activity known to man by August and everyone is bored silly - consequently, any movie at all will do at that point. Anyway, the movie that afternoon - and who even cares to remember WHAT the movie was - had a scene in it that was funny and sad at the same time and suddenly I looked over and saw three sets of eyes staring at me with mouths open.  I asked what in the world was wrong and they all just kept gasped and one finally said, "Mom!  You're crying! You NEVER cry."  I thought they were nuts but thinking about it for the next week or so (obsessing?) I realized that the little stinkers were absolutely right.  I did try to protect them from the worst parts of my illness and really they only saw the bad stuff when mom was in the hospital and they weren't too sure what went on in there.

But in trying to protect the kids from as much of my illness as I could, I had given off this air of things don't hurt me.  Funny how things can be taken.

The purpose of the story?  I guess I just want someone to know that I've worked really hard on protecting my kids as much as I could, though I often think that THAT has blown up in my face and that they don't REALLY get it.  

And I also wanted anyone out there to know that when I say that I cried more this week than I've probably cried in my entire life, I'm not saying this lightly. The pain has been excruciating but I think I could take it were it not for the fact that I'm just so darned tired of everything going wrong with me every time I turn around.  And you know it's bad when there are two reasons that you don't want to go to the ER: 1) because you haven't bathed in so long and REALLY stink because you've sweat so much and 2) because telling the ER staff what is wrong with you is just beyond what you're capable of doing.  Really?  Are those reasons at all legitimate?

And you know: I should learn to keep my mouth shut sometimes. I had praised our ER in an earlier post.  Well, this time it was a nightmare.  The staff was loud, rude and obnoxious. The lighting was horrid and obviously when the "state of the art" rooms were designed, no one took into consideration anyone coming in with a migraine also in tow.  Actually, my migraine was barely a migraine until I got to the hospital and all the noise - with an empty ER!  I was puzzled for a couple of days as to why my treatment was so night and day compared to the last time I was there and couldn't figure it out. 

And then BINGO!  I got it.  How could I have been so blind?   This time I had come in with an invisible and chronic illness that couldn't be measured.  I was no longer in there with a problem which could be fixed by an operation nor could it be measured by any testing. Ergo, the system which deals so well with acute problems, but extremely poorly with chronic ones, was in full blast mode and then some.  Ah!  Now I realize why one of the nurses that I had during the surgery stay had disliked the ER so much!  

Oh, they were generous with the pain meds - I must give them credit where credit is due.  In fact, they gave me so much that I got to sleep for five hours in which I have NO idea what they did, what all was ruled out, mostly because I didn't make notes when hubs told me and I should have, but really, I just don't care this week.  Furthermore, I do think that if I ask hubby one more question about the ER visit he may choose to risk prison and just shoot me.

But the difference was night and day.  I had back pain, chest pain and breast pain, was nauseated - and fed up with that since I'm the first to admit that I don't do nausea and when it hits I simply can't cope with it.  I always say, give me anything but nausea and a sore throat.  (Do I sound like Forest Gump?)  Actually, I've been dealing with the nausea pretty well, since I've had it almost non-stop for about a year but it's been really hard to control with medication for the last six months and besides, wasn't it supposed to go away when my gall bladder was removed?  And of course, it hurt to talk since the incisions in my abdomen from the gall bladder surgery have gone into full pain mode now.  I guess the part where my immune system has something to fight has given up and decided to turn around and retreat.  So after crying all day, while the painters were in the house trying to be very quiet but it is just so annoying to have anyone around day in and day out and hearing every bit of the sanding that goes on (plus, cough, cough cough!), the pain getting worse each day, by Tuesday I was a blubbering idiot behind closed doors.

And really, is there anything worse than a blubbering idiot who doesn't even know what IS wrong because she has no short-term memory at all?  I had to have sounded loony because it was this and that and this and the other.  Thank heaven hubby was able to give some sort of history - after we debated whether or not we should go to the ER for over 8 hours.  The neuropathy in my foot was giving me a hard time, then my knees would go into a pain where they felt like they'd been glued on backwards then another area would take over.  The anti-inflammatories aren't doing their job and my hand which had the surgery is puffed up all the time and hurts like you-know-what because just think of all the nerve endings in the hand.  It was the entire Civil War going on inside me with several major battles going on simultaneously and with one part of the body going into the off-the-chart pain to another part taking that honored place to another.

After arriving home from the ER we were able to schedule a mammogram (yep - 7 years since the last one) and I found myself almost hoping for cancer.  Why?  Well, anyone with CFIDS, etc will understand: I wanted to be taken seriously.  I didn't want that loud talking from the hospital staff as if I were mentally incapacitated, deaf and/or didn't understand English.  And yes, when I asked if they could please use their "indoor voices," there were quite offended and talked louder - the ER staff, that is.  

After the imaging, the radiologist came in and explained that they found some calcium deposits but nothing else.  Well, I wanted answers.  Where had the pain come from?  I had certainly not imagined it and I wasn't in a mood to be bullied any more.  To give the radiologist credit, he did try to talk to me about that one and he tried to give me reasons for breast pain.  When he mentioned that back pain could be the cause of breast pain, hubs and I were so excited that we both yelled out "Bingo!' at the same time.  The back pain had been so bad that I had even considered allowing my rheumy to give me some trigger point injections - but chickened out.  Nothing else was helping out with any of my meds, so I thought, why even bother going through that "ordeal"?  I have enough shots every day and besides, I was hurting from a phenergan shot that one of the nurses gave me in a very odd place on what I thought was supposed to be my bottom, but kind of missed her target.  No, it was time to go home and continue the tears.

They seemed safer than any hospital or doctor that day and all of this past week.

Hope the rest of you all are doing your best, only better.  It helped to talk.  Thanks for indulging me.  Ciao and paka! 

Progress Report Surprises

Well, today turned out to be a bit of a surprise.  Just as I think I know more or less the things that are "majorly" wrong with my body, the son-of-a gun (my body, that is) throws a curveball at me.  Oh CFIDS/ME/CFS and fibro, you evil, evil rascals  entities.  You betrayers of myself.

I saw my surgeon this morning - you who read my blog regularly MUST remember Dr. Hunk!  Oh, he's just a wonderful gentleman, from a different generation when people had beautiful manners but were ever so strong in a silent dignified way.  But I'm not going to extol his virtues today - I'll have to leave that for another time.  Sigh!

Instead I received more clues as to what's going on with me and I think that in the process I may have shocked the poor man a bit.  Three weeks ago, we didn't have much time, in the scheme of things, to talk about much but the upcoming and then resulting emergency surgery.  Today I found out that he was quite impressed with the fact that I had to have been "in a whole lot of pain" from the chronically-infected gallbladder and one of the stones which was a "whopping" 0.8 cm.  

He'd thought that I was nauseated and constantly throwing up before the surgery (I told him our family's weird that way: we don't do nausea nor barfing) and he said that I would be feeling sooo much better very soon because of the surgery, once the healing sets in "big time."  He gave me another blow by blow of how long it takes your body to recover, how much recovery is done by x amount of weeks, months, etc.

I told him that I was "unusual" in that after surgeries, I've always felt my best, the theory being that my immune system had something to fight, other than my own body.  In other words, my immune system was way too busy fixing me up and boy oh boy, it was nice to get a break, relatively speaking, from too much pain.  Oh, I had pain, but not like I normally have it and I've hardly had to take any pain medication at all as my body heals.  Very weird.  Shows how you DO NOT GET ADDICTED TO OPIATES IF YOU ARE UNDER THE CARE OF A DOCTOR WHO KNOWS WHAT HE IS DOING AND IF YOU'RE ONLY TAKING THOSE OPIATES WHEN YOU ABSOLUTELY NEED THEM!  

But as the appointment went on, I think he started to realize, finally, that the infected gallbladder was the least of my problems.  I told him I had no idea that the gallbladder had been an "outstanding" problem and only felt nausea when seeing too much fruit and didn't have enough meat protein.  Furthermore, the fact that I'd had pneumonia since July and hadn't known it had definitely shocked me - as it ended up shocking him that I'd not realized it too.  He then discovered that I never really had much pain in the gallbladder area but three times, mostly because I'm always going through bigger pains in other areas.  When he saw all the medications I was on, he started getting a better idea of the stress my body is under always, as in chronically, relentlessly, and without end.  Unfortunately. (Though fortunately, in that he understood what was going on, or getting a small picture of it, having an open mind, not rigid in thinking like too many other doctors can be.)

He also got a kick, in a perverse way, from finding out that the pain from the surgery woke me up, not a nurse, and that instead of expecting pain medication to help me with the post-surgical pain, I wanted to walk around - in the recovery room!  When I asked the nurse for permission, she was quite taken aback and couldn't believe I wanted to walk.  I simply thought they wouldn't give me any medication for the pain - having been through the machinations of the "major medical center" and its attitude towards pain with my daughter and the barbaric and lackadaisical attitudes towards pain relief.  He looked a bit put out by the perhaps "inflated" reputation of the "major medical center."  Actually, I saw quite a bit of that at the hospital during my stay and was quite happy to see that the high rating of the "major medical center" may not be as kosher as some would have us believe.

Oh my, YES!  They saved my daughter's life and on more than a couple of occasions. I'll forever be beyond grateful to them for that, beyond any words I could ever express.  Her surgeon was BEYOND superb and I can't praise HIM highly enough, but that is where it ends because they also caused her so much unnecessary pain - off-the-chart pain which added to the stress on her already weakened body.  They are great for a few things which very few places in the world can do, but in my humble opinion, they are really below par for the non-sexy issues which don't help them with their fundraising.  I seem to be under the mistaken impression that they should be superb and better in ALL their departments, but then I guess I'm just too picky!

I also want to add that "major medical centers" in general are definitely overrated.  I saw a commercial on TV recently and it said something about our community hospital being 12th in the country - yes, nation-wide!!! - for coronary efficiency, skill and care in ER centers.  Impressive, but I've always known that our town has superb medical care.  On the other hand, it's great to hear that we're being recognized! 

So, back to Dr. Hunk  my surgeon: I think he now has a new respect for those of "us" with CFIDS/ME/CFS and fibro!  Today he saw a woman in front of him who had been through h*ll and was still able to handle it as if it was a minor irritation.  This is the sort of thing that I want to convey to the world.  

But the body betrayal!  My body never ceases to amaze me, truly.  It turns out we have yet another surprise.  My body, according to the pathology report, is still in renal failure, not having recovered from the near-death experience of last year - a year ago this month - when I had two surgeries for compartment syndrome and all my organs started shutting down and worse.  Evidently it's not enough renal failure for dialysis, but still enough for it to be a serious problem and consideration.  Me: what else is new?  I'm losing body parts right and left, why should this be different?  But I suppose that when I see my GP, I'll need to have a talk with him about this new "discovery," along with all the other surprises we've discovered since I last saw him about six weeks ago.

And that's my progress report.  It feels rather self-indulgent going into all this detail.  On the other hand, my head is spinning with all of this news.  I need to figure out what everything means.  I STILL forget to take my thyroid medication until I start experiencing various symptoms returning.  My body is always surprising me: one day it can be my peripheral neuropathy that reminds me that I forgot to take my medication that morning, the next day it may be when my voice starts to go very hoarse and I sound as if I'm croaking.  Perhaps I should start a New Year's Resolution list now and put taking my thyroid medication on time each morning as number one on the list.   On the other hand, what about all the other number ones that need to be on the list?  

Man oh man.  How many more surprises can my body bear, I have to wonder?

I did, however, do my civic duty and voted: that was absolutely fun since I ended up talking for a little while to my old/former neighbor's sister, who's 91 years old.  In the midst of our conversation, I mentioned how often I remember her mom and the conversations we would have across our mutual fence.  The daughter was obviously touched and said "Mother" would have loved to know that I remembered her so often, and most especially our mutual love for gardening.  How I still miss those neighbors!  And how I love our little-town feel, especially on election day when you run into neighbors you -Ok, *I* - don't see very often any longer, due to the DD.

And to top it all off, hubby and I did indeed get to TJ Maxx and managed to fill up two and a half carts of things needed for the house as we will try to get the house into shape for the holiday season - IF we can get it looking like we're not in the middle of the remodeling and redecorating phase which, actually, we definitely ARE in.  (I KNEW we should have simply moved!)

So, all in all, it was a very up and down day.  I know that the next week is going to be payback for all the socializing and feeling "human" that I did today, but it will have been worth it.  Every once in a while you have to turn off that computer in your head that factors in every step you take and gauges it as to how much of a price will be paid.   Of course, with my recent luck, I just hope that I don't end up paying for that sort of thinking by losing yet another body part - I'm really attached to the remaining ones I still have, knock on wood!  (JOKE, I hope!?)

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

Fibromyalgia: Is That All There Is?

"The Three Graces" illustration that appeared in the original fibromyalgia criteria study (1990) with tender points superimposed.

I've been asked (more than once) if there is a blood test that will determine if one has fibromyalgia (also known as Fibromyalgia Syndrome (FMS), nasty and degrading little term that's used, "syndrome," no?)  The short (and sad) news is that no, there is no blood tests that will identify fibromyalgia.  However...

...there are certain blood tests that should be run for three reasons: first, to exclude any conditions that may mimic fibromyalgia; second, to exclude if comorbidities exist - that is, to see if other conditions in addition to the fibromyalgia exist; and third, to factor in what would help establish how and if fibromyalgia symptoms can be lessened.

Before we get into the above reasons, I would like to emphasize that in most cases fibromyalgia is relatively easily established by a rheumatolgist or pain specialist knowledgeable in fibromyalgia.  Not all rheumatologists, pain specialists, or even neurologists, however, are equal in identifying fibro and indeed some of the specialists out there who claim to be well-acquainted with fibro are indeed not specialists in the field.  Unfortunately, I know this first-hand as a "professional patient."  (Ha! But sadly also true.)

But getting to my list:

• Fibromyalgia can occur on its own, yes.  For the most part, however, it's a sign that there is something else going on and that cause needs to be checked out. 

• As they say in the medical field, your usual doc starts looking for horses before the "zebras bit" but when it comes to fibro, a medical history is absolutely necessary as it may point out what would normally be viewed as zebras in most any other medical field.  In other words, it's incredible that when it comes to fibro the zebras are actually horses.  For example, adult growth hormone deficiency is often seen in fibromyalgia as Dr. Robert Bennett first described in 1992.   Car accidents can also be a cause of fibro, although often showing up years later. As is seen in my case, HGH insufficiency and numerous other factors have contributed to my fibromyalgia, including my CFIDS/CFS/ME.  However, lupus, osteoarthritis and even cancer - indeed almost any autoimmune disease and infectious disease - can cause fibro, as well as sleep disturbances (the latter described by Moldovsky and Smythe, 1974).

• There are other blood tests that can (and should) be run to see if it's a nutritional problem. A deficiency in magnesium (Red Blood Cell test should be run or the results will be inaccurate) and Vitamin B deficiencies are just two nutrients that can lead to problems with fibromyalgia. I was shocked, for example, to discover by two different doctors that I was indeed vitamin B deficient (trusting soul that I am NOT) and that it can take up to two years to overcome a vitamin B deficiency. 

I've found that after identifying and treating my many deficiencies, my fibromyalgia got much better, but it took a long time (well over two years for the HGH to also kick in) but I need to be monitored all the time because as I've said so often before, things just keep going wrong.

The American College of Rheumatology has published criteria to help the doctor make the diagnosis of fibro.  However, keep in mind that fibromyalgia is not a diagnosis of exclusion.  It used to be thought of as a "wastebasket" diagnosis, but no more! 

It also used to be thought of as a manifestation of depression. That notion has been disproved by many studies showing that depressed patients perform very differently on neuropsychological testing compared to fibromyalgia patients. The two profiles are simply very different.

Your doctor can use the published fibromyalgia criteria to establish whether or not you have fibromyalgia but blood testing can be very useful in the assessment and treatment of fibromyalgia patients.  However, looking into the various criteria (i.e., the evolution of the criteria over the years) and knowing some of the people involved, I must say that I do have a problem with some of the doctors who are in ivory towers and see few patients, who don't take good histories, as well as those who are afraid to touch their patients.  

But then I'm a bit picky, aren't I?

As always, I hope all are doing the best they can be, only better.  Ciao and paka!

Raphael's original "The Three Graces" with the tender points superimposed.

The (Woman) Doctor Behind President Kennedy's Pain Management

I'm happy to say that there were two articles just published in a medical journal about one of my heroes, Dr. Janet Travell, a pioneering doctor in pain (to say the least).  The articles, which discuss the autoimmune disease and the pain medicine aspects of President Kennedy's care by Dr. Travell, is found in this month's edition of the medical journal Practical Pain Management (with his image on the cover) and can be found at the link here and here.  I am especially excited as Dr. Travell has long been one of my heros - and I just wrote a post about her recently).

Dr. Janet Travell with  First Lady "Lady Bird" Johnson. Dr. Travell became President Johnson's White House Physician after the Kennedy assination. 

I'd like to point out that my "source" who knew Dr. Travell very well was not one of the doctors who wrote the articles - I don't want to mislead you - AND petty person that I am, I'd like you to know that I have excellent sources (ha! regarding "petty," true about "petty" and "excellent sources").  

There are a few problems I have with a few "facts" in the articles, but overall, the information is excellent.  Because of my extensive comments and my real effort to shorten my posts, I'll need to divide my observations into several parts.  I'm afraid that when it comes to pain management I get just a TAD (over) serious!  (Ahem!)

My reservations are mostly small, though some are important, while others are small, period.  On the other hand, there are a few points that I REALLY agree with that I'd also like to point out as excellent points made.  Today I'm starting with Dr. Jay's article in light of trying to spare people long-winded posts. (Yes, yes, I basically said that already!  Sigh!)

1. In the article by Dr. Jay, he's a bit inaccurate and I wonder how well he knew Dr. Travell when he wrote that "Her use of procaine injections was most likely into myofascial trigger points...."   UH...excuse me, but Dr. Travell wrote two volumes about myofacial trigger points, still sold at Amazon, as I noted in my post and I even placed a picture of the volumes at the end of the post.   My source tells me that she most certainly DID inject JFK's trigger points and that was also the consensus at a medical conference where she was the guest of honor.  This was when and where my source first met her as a relatively young man when she approached him in her wheelchair, knowing already who HE was, and saying she was following his career, "young man!"   (He would definitely have been too intimidated to approach her and this man is NOT easily intimidated!  Hero worship can do strange things to people (ha!).)

2. I only hope that when Dr. Jay wrote "other stimulants ... There continues to be methylphenidate for use, as well as amantadine" that this was a spelling mistake (maybe generated by the dictatorial iPad which haunts me as well!) and simply not caught by the editors.  On the other hand, I don't want readers confused by seeing this medicine quoted in this usage.  I only caught this error regarding Amantadine since Amantadine is an antiviral medication which I DO take, but for my CFIDS/CFS/ME, not for my fibromyalgia and/or myofascial pain.  The author most likely meant the stimulant, "amphetamine."

3. Dr. Jay also wrote,  "Finally, and most impressively, Dr. Travell treated more than the symptoms of pain and hormonal dysfunction.  .... Dr. Travell knew then what we know now -- physical exercise is necessary to maintain a number of physiological functions as well as to help decrease pain." 

Now this, the exercise, is a real bugaboo of mine, I fully admit it.  With all due respect, however, I beg to differ and one fibro source has even testified in court many times that exercise is not always appropriate for pain.  It all depends on the patient.   As I keep saying over and over again, we can't be plugged into any formulas!  Dr. Travell most definitely believed in what is right for each individual patient and didn't believe in any set "theory" other than going by results - and this in fact was an example of her genius! Furthermore, as I'm always saying, I've seen more theories come and go over the years, each time doctors absolutely sure that THAT was the answer.  I have finally started looking at everything as what works for me - after much damage was done to me, completely innocently, I must add, and much of it permanent damage - and I've had to long ago stop going with anyone's "dictates."  I can just imagine Dr. Travell looking down and shaking her head at some of the rigidity going on.

4. I whole-heartedly agree with the following excellent conclusion, however, and want to point it out: 

"Bottom line -- Dr. Travell treated President Kennedy in a highly appropriate fashion, using tools that most physicians today wouldn't know how to use, and even in ways they may not have been able to fathom.  I do believe that Dr. Travell knew or intuited various things about drugs and hormones that we now understand better and more deeply.  The fact that her treatment plan was so effective is a function of her exceptional skill as a physician at a time when physicians knew far less than we know now."

Now THAT quote is absolutely right!  Dr. Travell understood one could not be rigid in his/her thinking.  She also understood how much each patient varies and how each patient is unique.  In addition to her care, love and intuition of patient care, she understood that no two patients are exactly the same and each patient's care is unique to that care, something the vast majority of specialists today should remember.

"This is not cookie cutter...you gotta do it right," to quote MY source.

As always, particularly today, I hope everyone is doing their best, only better. As they say, "to be continued!"  Ciao and paka!

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A Model Life: Especially For Her Time

I have lived in a very special world - a world of love and security; beauty and serenity; opportunity, adventure, and variety; challenge and achievement; and the appreciation of my peers. I have had a sufficiency of everything that I desired and a surfeit of nothing."  -Dr. Travell, from Office Hours: Day and Night, 1968

This weekend I found myself thinking about the contributions that women have made over the years - and even in centuries past - in certain fields.  Yet all too often these phenomenal women have been forgotten.  It started off as a spoof I wrote to my BFF about the roles of women and men.  However, it developed into something else completely as that evening I got really sick and somehow my thoughts came around to a huge pioneer in pain management whom I felt many who read my blog should know about, especially the younger women I come across.  She's the mighty fine lady who was a definite pioneer in trigger points and myfascial pain syndrome.  And I love this part: though trigger points started their rounds amidst a tiny group of (male) doctors, through the 1920's, '30's and 40's, she outlasted her male counterparts.  They gave up, but she persevered, really discovered it and ruled it! 

Janet Travell (born in December of 1901) has been on my personal radar for decades for all too many reasons that I won't go into at the moment (did I just hear a collective sigh of relief???) and has fascinated me for decades.

At a time when men overwhelmingly ruled the medical profession, Janet Travell went to medical school in NYC, to Cornell.  She studied in a equally prestigious training program at New York Hospital, while also serving as an ambulance surgeon for the New York City police force - go, JT!  As a research fellow at Bellevue, she studied digitalis for lobar pneumonia, but it was during her years at Beth Israel Hospital in NYC that she became so fascinated in skeletal muscle pain, and which rocketed her career into the stratosphere.

Some of you very young readers may not really comprehend the magnitude of this sort of achievement. I'm old enough to remember having a pediatrician for a brief period who was a woman - and boy oh boy, did people ever notice - and criticize! (How unfeminine! How unseemly!)  Because of her devotion as a physician my pediatrician never married nor had children, which was quite the norm in all too many cases back then: choose a career or a family, but not both! Better yet, stay home bare-foot and pregnant.  At least now we have choices.  Back then, it was really tough to do much of anything for a woman.  And if a woman dared to become a doctor, the two "acceptable" fields seemed to be OB/GYN or pediatrics.

Yet Dr.Travell managed medical school, doing research, training, practicing, and then to marry and have two daughters.

 
In the 1950's, she took on a protegee, David G. Simons, who had served as an Air Force flight surgeon.   Many years later, they went on to write the seminal textbooks on  myofascial pain syndrome, aptly titled, Myofascial Pain and Dysfunction: The Trigger Point Manual; Vol. 1. The Upper Half of Body, dealing indeed with the upper half of the body from the waist up and then Myofascial Pain and Dysfunction: The Trigger Point Manual; Vol. 2., The Lower Extremities dealing with the bottom part of the body, from the waist down.  Both volumes are available at Amazon and the second edition of the first volume was published with Dr. Travell, though when the time came for the second edition of volume two, Dr. Travell had passed away.

In the 50's, when a certain politician happened to hear of the successful procedures that Dr. Travell had had with back pain the politician's orthopedic surgeon asked for her help.  This politician had sustained massive back injuries during WW2 and the many invasive back surgeries he'd then had to endure made his pain almost unbearable.  When this young man was later elected President, he asked Dr. Travell to be the "Personal Physician to the President" and she humbly accepted, thus becoming the first female physician to serve in this position.  After President Kennedy was assassinated, President Johnson asked if she would continue to serve as the White House physician but she left in 1965 for "greener pastures," as a professor, lecturer, and many other incredible "feats." 

Two bits of trivia.  First: if you've read any biographies of JFK, you might mistaken Dr. Travell as the infamous "Dr. Feelgood" who was often slipped into the back doors of the White House in order to give JFK questionable pain cocktails. This was most certainly not Dr. Travell.  Secondly, it was because Dr. Travell "perscribed" a rocking chair for the President's back that the rocking chair became wildly popular during the Kennedy years and long after. (Can you tell I love trivia?)

In an interview I'd done at one point, I asked a doctor who'd known Dr. Travell, why is it that we rarely hear of myofascial pain syndrome but so many are familiar with fibromyalgia?  Before he could answer I jumped in and asked if it was because fibromyalgia now has a "magic pill" in the form of Lyrica, Cymbalta or Savella and thus is advertised on TV an awful lot.  Yes, many are relieved by these medications but there's also huge profits to be made in these medications.  (Pharmas: if you happened to be reading my teeny tiny blog, I'm hardly worth your while and have left instructions as to what to do in the case of my  sudden death: joking!)  It's just the way the medical industry works: not good or bad, just IS, for many reasons.  (Remember, I don't do politics!)

On the other hand, myofascial pain needs the skills of a trained physician to hit those trigger points just right and, indeed, to even identify them.  (Poor man couldn't get in a word edgewise with me there!)

I asked him what precisely is the difference between fibromyalgia and myofascial pain syndrome?  Before I could jump in with an answer for him, he told me that myofascial pain syndrome is a condition that affects the muscles, and, of course, the famous "trigger points" are involved.   Fibromyalgia, on the other hand, involves the brain, in the central nervous system, and has "tender points." 

These two fields evolved separately.  On the whole, myofascial pain syndrome is addressed by physiatrists (not a spelling error!), and physical rehabilitation medicine physicians, even anesthesiologists at times.  I've read that chiropractors who practice kinesiology are often involved in this field also. (And I can attest to one chiropractor who practiced "applied kinesiology," which helped me tremendously.)  Furthermore, many of her techniques are still in use today, especially in sports medicine treatments.

Some of us who have CFIDS/CFS/ME often have fibromyalgia (there is much overlap) and/or myofascial pain, as is in my case.  The overlap of CFIDS and fibromyalgia is often hard enough to distinguish.  The physician who isn't well-trained in both fibromyalgia and myofascial pain often has trouble distinguishing the two fields as well, and in too many cases doesn't know about either field, though that is changing, albeit slowly.

After President Kennedy's death, Dr. Travel continued with an ever-increasing successful career.  I've heard from a couple of doctors who knew her that she was charming and witty.  She continued going to conference well into her 90's, despite a wheelchair, and kept up a practice seeing patients up until the year before her death, at the age of 95.  She was always encouraging to the talented young doctors coming up along the way and kept up a steady correspondence with many.  One doctor told me how he came to see something that Dr. Travell hadn't realized in her book but was uncertain as to whether or not he was seeing things correctly and had so much respect for her that he called her, gingerly addressing the bind he was in.  Rather than be discouraging, she was thrilled that he'd made this observation and encouraged him to publish and indeed nominated him herself for the Janet Travell award, twice!   Yet when this doctor was even younger, a (male) mentor was afraid of publishing findings because he feared alienating anyone in his field, despite the new evidence.  And you wonder why I think she's so incredible?

And, you may wonder, why in the world did I bring up Dr. Janet Travell in the first place, other than to be present a piece on what to some may appear to be trivia?

The answer is that I've realized that many of the people who read this blog are young, more often young women as opposed to young men.  They (you) have dreams, often life-long dreams, which have been put on hold.  They (you) need to rest up and take care of themselves in order to beat these "invisible" illnesses.  The odds, they (you) often think, are against them.  (Oh good heavens: we can be here all night with the semantics!)

I'd like for them to consider two things.  First, you may have to take a leave of absence from the life you envisioned for yourself in order to give your body the rest and healing it needs.  

But secondly, your dreams may change as you make this new journey.  Your dreams may become even more rewarding than you might have ever imagined before coming down with these various illnesses.

To give you a good feel for the magnitude of what Dr. Travell went through: it was only in 1920 that women in the US got the privilege of casting a vote.  But, in 1920, Dr. Travell would have been only 18 years old, but everyone - male or female - had to be 21 years of age to vote, so she had to wait for the following election to place her first vote!   And yet in just a little over 35 years later, she was the official physician at the White House.  Oh, how I love that!!!

I don't care for the fact that too many doctors, advisers, etc., are giving out advise that is "one size fits all."  Think how wrong a bathing suit that "one size fits all" looks like, or even a T-shirt.  Why would we want medicine that does?

So, again my message to all is, learn to read your bodies.  No one will ever know it as well as you do.  Then give your doctor or doctors the info she (or he!) needs in order to work as a team to get you better, no matter what illness you or your loved ones may have.  Knowledge is power!

So, to Dr. Travell: hats off to you.  Another fine example to all, certainly an inspiration.

And in the meantime, I hope all are feeling as best as they can be, 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!