Ethical Dilemma: Friday Tidbit

At a rheumatology medical conference in the mid-80's, one of many, talking to two rheumies...

Today I have a truly horrid feeling in my stomach.  I had planned to write an "up, up, up" post, knowing that I've not laughed much in the past month. I've written entirely too many medical posts lately.  Worse, I've been complaining a bit too much about my health.  OK, not complaining as much as reporting but it makes me feel a bit too self-absorbed. But today I had a fit!  A complete and total fit.  

Today I read a tweet on one of those Internet newspapers/newsletters that come out each day with various "articles," which are actually links to various blogs/websites.  These links are to writings which deal with CFIDS/ME/CFS and/or fibromyalgia that come across on twitter, depending on which newsletter, etc.  These various newsletters have been a boost to my blog and I appreciate that, more than I can ever say, believe me. A few of them publish an almost embarrassing number of my posts, just as they publish other people's posts. They do a pretty good job of getting hold of some rather great blogs/websites which I've read. They try to publish links to doctor's posts and even links to medical links if those are on their radar and are thought to help others.  

With all of that said, I want to make something VERY CLEAR because I have a huge BUT coming.  It is a HUGE but and I really don't know how to word this in order to convey the levels of concern - and more than a little outrage - that sometimes hit me.  

There are a few issues that are inherent in this age of "information."  I have hesitated to say anything at all for fear of being misunderstood and because I have found much social and emotional support with some of the people, and dare I say "friends" with whom I tweet.  And I LOVE twitter for that reason.  I have even found ideas for living life as a person with my fibro, CFIDS and the bucket load of medical conditions that I've managed to accumulate.  I've had great laughs.  I've had company in the middle of the night when the rest of the world sleeps. 

On the other hand, I do have a problem with some of the chatter on twitter.  And when I say this, understand that this complaint includes MYSELF as much as anyone else.  I hope I'm being clear here.  Stay with me because, as many of you know, I sometimes have to write more than seems necessary - but I want to cover all bases, crossing every "T" and dotting every "I" and I want people to know that this is a problem that I normally just dismiss as an annoyance.  However, today, for many reasons, that tiny percent became a big deal.

First, I want to know, what the heck are doctors doing on twitter?  If these doctors are any good at all, why are they advertising on twitter, because when it comes down to it, that is exactly what those doctors are doing: they are advertising and marketing themselves.  Actually I want to say they are "whoring" themselves, but I'll refrain from that.  

Instead I have a few questions:

• What decent doctor even goes to the trouble of doing such things?  Shouldn't a doctor be reading medical journals or seeing patients, or even returning calls to patients about their lab results, renewal of prescriptions and the other million little things that would actually involve patient care? 
• If a doctor really has valuable advice wouldn't the right thing be to publish it in a medical journal or at the very least have a letter written to the editor of a medical journal? These letters tend to be published if the doctor makes an interesting point to his peers on various concerns about patients.
• What responsible doctor gives out medical advice on the Internet or even face-to-face at a cocktail party or at church to the person sitting next to him in his pew?  That would be totally irresponsible because patients need a thorough evaluation and THEN given medical advice.

I have to wonder if the doctors on twitter went to an inferior off-shore medical school and if they even got beyond an internship in this country (the bare minimum required by law in order to practice) in some Godforsaken prison with the worst scumbags in the world?  I have to wonder are THEY twittering from a prison themselves?  I have to wonder the following as well:

• a) what is their agenda?
• b) how good are they?
• c) can they not make a living and therefore have to sell themselves?

Second: who are the people who write blogs?  And this is where I have problems with blogging in general. 

Let me say that I suffer over each and every post I write.  The medical ones give me huge stomach aches and make me physically nauseated when I am finally ready to hit "publish."  I have worked on those posts for at least a day and even longer - and I'm talking at least 8 hours if not MUCH longer for the most primitive form of my more complex posts - in order to make sure that I have all the correct medical information.  I consult with impeccable sources and then I do a little bit of research to see what I can find on the Internet.  I tend to check out places like the Mayo clinic or other sites that I know have more or less accurate information.  Heck, I've even found mistakes there.  They aren't God, after all.  I'm not God either - but at least I know it! 

Furthermore, I dig and dig and dig until I come up with what is the most accurate information that I can without a healthcare degree.  I wasn't an English PhD student for nothin'.  (And let me make it clear I did NOT get that PhD because I had to drop out mainly for health reasons but got impeccable recommendations which led to jobs in two "major" publishing houses in New York City.)

Back to the way I write my posts: more often, especially in the beginning when I was wetting my feet, I would simply write more about my personal experiences.  When I would venture into anything medical I was especially careful.  That's when I'd check unimpeachable sources to see if my idea for a post was even valid. My "unimpeachable sources" include physicians who have published in medical journals and have even been declared expert medical witnesses in court.  When I tackled complicated concepts, like DHEA or Adult Human Growth Hormone deficiency, I would even vet my information with nationally-recognized specialists in the field.

Furthermore, I know that everyone knows that I'm not a physician - you'd have to be pretty brain-dead to think I'm a doctor.  I also don't give out medical advice.  I report what I know and what I've lived through and even at that, I get my records checked out to make sure that I'm not even giving you the wrong date.

So where am I going with all this?

I have read certain posts which report the opinions and finding of various doctors, many of whom are misrepresenting the facts.  I realize that everyone is entitled to their own opinions, but NO one is entitled to their own set of facts!  

And today, I finally hit my limit of bull in what I read on the Internet.  Why?  Because today I saw a link to an article that caused me to have a fit.  I knew it was not accurate the moment I saw the title.  I got really curious and read the article and I saw the name of a doctor whose name is EXTREMELY familiar to me and not in a good way, whatsoever.

That's when I'd finally had it.  I have tried to be discrete, in part because I don't want a lawsuit on my hands.  There are other considerations as well, but if I keep on we'll never get done with this post.

However, now I have an ethical dilemma.  What  do I do?  Do I report some of the names which I know are absolute sh*theads or do I let it go by me?

On the other hand, if I give out names of doctors who are actually wolves in sheep's clothing that makes me as bad as some patients who will sabotage a doctor's reputation on those idiotic doctor's ratings sites on the Internet, upset because they didn't like to pay for their healthcare or were upset that a doctor kept them waiting too long.  

Too often patients don't even know if their doctor is really any good.  When our daughter got sick, I had no idea who the best people in the Crohn's/Ulcerative Colitis field were.  We had to go into it all semi-blindly and rely on friends of friends who had a bit of "inside" knowledge.  I freely admit that I've had the champagne of care for my own medical problems, going from New York City and working myself south and west, geographically speaking.

I knew when the doctors treating my daughter were wrong with her pain management, but when it came to her unique and never-seen-before case of vicious and sudden onset of Crohns/UC, we were basically clueless as to whom we were trusting.  And to give credit to her doctors who dealt with her case in the disease situation, these doctors (and there were literally scores of them) freely admitted that they had no idea what was happening to her precisely. 

I, personally, have been to more doctors than I can ever remember.  I do have contacts - excellent contacts - in the medical world.  I've come across great doctors who knew their stuff, at least one who has testified in front of congress, mediocre doctors (the ones you forget) and awful doctors who are out there advertising the stuffing out of themselves.  Yet I've never besmirched anyone by name.  I know that people are loyal to doctors.  I know that doctor/patient relationships are complex but are also sacred, often a matter of you love one or hate one.  

I've had only one doctor whom I've seen that I can say that I absolutely LOATHE on my own behalf and I have complex feelings about the one "major medical center" which saved my daughter's life, but also put my daughter's life in jeopardy.  Had I not been by her side 24/7, with a relief of a family member if one was around, she might have very well died.  If anyone's a very careful reader of this blog, a great detective, they can figure out who these people are, because there's always a trail left behind.   

Yes, I HAVE withheld personal information, but I have never actually lied to anyone on this blog.  I don't lie in life.  I don't hang around with liars.  I don't lie here.  I can be outrageous.  I can be wacko, and I can be a lot of other things, but I have never lied here.  I have a HUGE bugaboo about lies.  A real "thing." 

Yet part of me feels that in withholding names it feels as if I'm lying.  Of course there are quite a few things that I've left out that don't give a complete picture of who I am.  This is not a blog for my most personal details!  I AM entitled to my privacy, be it because of good taste, or other reasons.

Why is it then that today, however, I feel like I am lying?  Excuse me as I go take a bath to wash the brown stuff that got on me today when I read some real rheumatology, and more specifically, fibromyalgia sh*t.

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


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(For full disclosure: Why was "Friday Tidbit" published technically on Thursday, by 69 minutes?  Because it would have been 13 posts for February - it's now March 1st as I add this - and I've been superstitious about 13 (especially Friday the 13th) since that was the day my daughter's nightmare with her IBD began so suddenly. It had always been a good luck number before, but not now!  But it WAS actually Friday somewhere over the Atlantic.  This is as close as I've come to a lie.  But when your kid... well, you know!  69 minutes seemed the heavy investment, though hubs and I discussed it for hours as to whether or not it was ethical.  I was about to wait for Saturday, but I also try to keep my promises and Friday Tidbits was a bit different today, hence "Friday Tidbit" with no "s" coming after the "Ethical Dilemma" part. Plus now I've added this note on Friday.  I almost sound like a Jesuit priest, appropriate for this day when the Pope relinquished his job. (Hey, I'm neutral guys!)  And you wonder why NO family member EVER wants to get into my head?  They are the sane ones! ;))

Five Quick Tips for Caretakers...

You want attitude???

What is it that those of us who have fibromyalgia and/or CFIDS/ME/CFS need when we are at the end of our ropes?  Well, since you're probably dying to know....

I thought that for humanitarian reasons only I would list a few tips that might end up keeping someone from killing a "loved" one.  At the very least it might promote family harmony.  In fact, it might be a good idea to enlarge the font from this post, print the tips up and tape them up around the house in numerous places.  I suggest at least one sign per room but you be the judge.  Some people require a lot of reminding.  Oh, I'm not naming names....  As I said before: this is purely one of those spontaneously generous things I'm in a mood to do tonight. (Good heavens, I do so hope you are in a state where you're not sure if you should laugh or you should cry!  And I do so hope that this is at least marginally more humorous than Seth Whatever-His-Name-Is, the guy who hosted the Oscars this year.)

With that, a drum roll please!  

• No surprises: we have enough surprises in our lives.  Every day we have something fall apart in our bodies or something that breaks in our homes and needs to be addressed.  Our lives are often nothing BUT surprises.  So, please don't do us any favors and try to make us happy with even more surprises.  We'll let you know what we want/need. (Note: WE, however, are allowed to surprise YOU!)
• Remember to "water" us!  If we get snippy, all too often it's something like our sugar levels or blood pressure dropping - or worse, it's already dropped and we're suddenly miserable.  We can't think when this happens.  YOU, caretaker, CAN!  So, remember, we need water!!!!!  A LOT of water.  (Basic Fibro & CFIDS 101.)
• Noise reduction: we cannot tolerate noises.  If we can hear the soda can pop in the kitchen on the first floor from our beds on the second floor what makes you think that we can't hear crashing pans or dropped things down there?  You don't think the squeaky wooden floorboards are NOT going to drive us bonkers?  (JUST a random example!)  Get your act together.
• Stop changing gears on us! If we are watching TV and the darn cell phone rings, do you really need to answer and talk to whomever?  Can you not tell people to hold off calls for a set hour or two?  Don't come by and "pretend" you're going to spend time with us if you are answering phone calls every five minutes and going into a lengthy conversation.  If you need to talk, leave the room and DON'T come back because that is changing gears again and we've already established that changing gears is very difficult.  So stop it.
• Don't leave us out "of the loop."  Do you have any idea how much it hurts to find out that there is important - and even not-so-important - "stuff" going on in our family's lives, decisions being made about finances, priorities, etc., and we aren't being told because "it might be too much"?  We already have so little control in our lives that when you leave us out of the loop you are making us feel even less in control of anything and this behavior is completely demoralizing and demeaning to us.  We count and we DO still have a brain.  It just happens to be a brain that is slower but it's basically as sharp as ever. (Studies have shown!) We even have good instincts, if you think about it.  (My instincts tell me to let you know that if anyone in my family suddenly keels over, *I* didn't do it!)

And that's it.  As they said back in my day: put THAT in your pipe and smoke it.

Caretakers: do you want to survive?   

Those who are sick: give this to your caretakers.  They do a lot FOR us, but there are days when all of us are not sure it's worth it.

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


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Is it Fibromyalgia or Lupus - or Both?

As the late comedian Rodney Dangerfield would say, "I get no respect ... no respect at all."

Often, I feel as if those of us with "invisible" illnesses such as fibromyalgia don't get the respect which WE deserve.  As a fibro sufferer I all too often feel that my condition is not treated as seriously as other medical problems which can be documented with objective testing such as blood work, urine tests, x-rays, MRI's and so forth.  (I'm not even going to go into the amount of respect CFIDS/CFS/ME gets, though in the end it can be described by one word: "none"!  Whoops!  I went there, didn't I?)

But it can also be dangerous not to be diagnosed with fibro if you happen to have it, or to go to a doctor who doesn't understand or treat fibro knowledgeably.  Some doctors want to lump fibro into the psychiatric wastebasket, others ignore it entirely and still others think of fibro patients as hypochondriacs. However, what may even be worse is the situation where doctors claim to be fibro experts - yet are not aware of the treatments available. 

Examples abound and I hardly know where to begin, especially given that I DID make that promise to you, as well as to myself, that I was going to work hard on shorter posts.  (Ugh!)  It's most unfortunate that too many of us can give too many examples of these problems with diagnosis of fibro as well.  However, I'm going to give you my take, that is, give you the old college try! 

Recently I was given a link to a so-called fibromyalgia expert whose videos appear on YouTube.  The video I watched was full of misinformation and confusing language.  It saddened me to no end when I thought of all the people out there who were getting this sort of care.  It also angered me that this self-proclaimed expert would often refer to "trigger points," hallmarks of myofascial pain, when he discussed features of fibro. How WRONG could he get, and so brazenly? 

"Trigger points" are, after all, associated with myofascial pain and "tender points" are found in fibro.  Perhaps what scared and upset me the most, however, is that knowing the difference between fibromyalgia and myofascial pain is Fibromyalgia 101, the introductory course.  If this self-proclaimed fibro expert actually went to the trouble of making a video tape and sticking it onto YouTube, you'd think he'd know better than to link the two terms "trigger points" and "fibromyalgia" in the same sentence, much less link the two in the same title of the one video I could force myself to watch - which I then eventually had my rheumy/immunologist see in order to make sure that fibro-brain here wasn't missing something.  This difference of trigger points and tender points is just basic Fibromyalgia 101, not even going into the challenging aspects of this complex medical condition.

Speaking of which, moving on to a more sophisticated level: musculoskeletal pain, fatigue, low stamina, and cognitive difficulties.  Sound familiar?  These are, obviously, symptoms of fibro.  However, they can also be problems that patients with other illnesses have.  Frequently, for example, fibro can coincide with systemic lupus erythematosus (lupus) which is a potentially fatal autoimmune disease.

The coincidence of fibro and lupus in the same patients was described over 20 years ago by Dr. Peter Lipsky, a famous Harvard lupus expert.  However, too many doctors today still don't realize that both conditions can occur in the same patient and that one cannot tell which symptoms are caused by which condition unless a careful evaluation is made. There is a dynamic interaction in the human body and things can change quickly depending on various triggers.  Examples of these triggers are stress, overexposure to sunlight, poor sleep and bad infection (like the flu).  Why is this important?  (I'm so glad you asked!)

If one has a flare of fibro, and also has lupus, the wrong treatment may be given to that particular patient if the treating doctor is unaware of the fact that the patient he is treating for lupus also has fibro.  For example (is there no end to examples today?), a patient with both fibro and lupus presents to the doctor with an increase in joint and muscle pain.  The doctor may assume that it is a flare of lupus and treat it with cortisone-type medications and possibly immunosuppressive agents like methotraxate, azothioprine and cyclophosphamide.  However, this could be a huge mistake if the increase in pain is due to fibro and not lupus.

First of all, the treatment with the above medications won't work if fibro is the culprit.  Second, these medications can have pretty nasty side-effects.  Cortisone can cause fluid retention, weight gain, brittle bones.  If an immunosuppressive is given when a doctor believes you have a lupus flare but it's actually fibro or a fibro flare, the immunosuppressive can actually cause such life-threatening complications as a low white blood cell count, which can lead to infections, or a low platelet count, which can cause bleeding in the brain and other organs.  

The flip side of the above scenerio is when a fibro patient who also has lupus has a flare of lupus but the doctor thinks that the worsening symptoms are due to the fibro getting out of control.  What can happen is that the doctor might adjust or change the fibro meds with the patient going into kidney failure or having a seizure from the lupus being untreated.  

The moral of the story is: you need to get an excellent doctor who understands these conditions inside out.  Actually, we deserve more excellent doctors who can help us.  You also need an excellent work-up to make sure a correct diagnosis - or diagnoses - is made.  We deserve that as well.  Just because you have lupus doesn't mean you can't get fibro and vice versa.  

In the old days lupus was called "the great imitator."  We know now that this title can apply to fibro as well.

Now that is worthy of Rodney Dangerfield, as in the first part of his last name: it is DANGEROUS (get it???? huh? huh? nudge! nudge!) to have your doctor misinformed.

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


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A "Picturesque" Thank You & Look Back

And always, always, thanks to my wonderful hubby of 37 years...

And we're here!  It's been a year since I started in on this little "adventure" of mine!  There were certainly many, many days when I didn't think I'd be able to keep up with a blog, but somehow, taking it one day at a time - often just one hour at a time - and here I am!  Am I allowed to now call myself a "blogger" after a year? What really ARE the qualifications?  

At any rate, it's been an incredible year. I started out completely uncertain about how I'd be able to do a blog because of my health and my incapability to work anything technical. I was completely intimidated by my PC. Oh, the dreaded computer and I are still not very good friends.  Actually, I'm not sure my iPads are very pleased with me either.  However, my PC and I have, at least, come a long way in our relationship.  I don't yell at it quite as much as I did in the past.  In turn, it cooperates a little bit better than it used to.  But it's still a bit of a "frenemies" sort of relationship.  And to think I never really understood the concept of "frenemy."  I do now!

My posts were all too long and STILL are way too long, I know.  I have been working on that, I promise.  In fact, I promise to work harder in the upcoming year on keeping the posts shorter: MUCH harder and MUCH shorter! (I've been too long-winded of late, after doing so much better for about a month - or less!)

In the meantime, I've SORT of conquered the photo part of getting my precious moments into the posts.  Why I ever started down THAT road I'm not sure since some days finding a picture has been more difficult than finding a topic.  I have a picture in my head but then I have to find it in the files and it isn't there.  Too often the picture I'm thinking of is with my mother, many states away.  If it's not lost for all time, that is.  But usually it's because I don't understand my files...

Actually we started with the picture which I'd somehow gotten up on my original Facebook page (it's still not changed), the picture which greets you every time you come to this blog.  It's a combination of my daughter and myself at about the same ages, though decades apart, of course!

The second post was a challenge because I didn't know how to post a picture, didn't know how to put up an avatar (is that the right word?) but finally figured the photo thing out - after about 12 hours of screaming and crying.  The post was about the Oscars and our family's love of movies and that special night.  Our religion is, practically, Oscar night.  And so it was only appropriate to talk about them.

And so it's only appropriate to go back to some of those pictures and memories on this day of the Oscars and my blog's first birthday.  I hope you enjoy!

The second "real" post picture of my motley threesome in a pub in England...

This was two of the crew from a previous year when they didn't want to go to England because they were afraid of missing the Oscars!  What?  Ruin my chances of going?  Were they nuts?  But they decided it was OK once they called around and found out that England broadcasts the Oscars as well. What 7 and 8 year olds think of these things?  (Picture link to another post, about my sudden inability to read...)

I explained to you about my history with anything like watches and computers: I even apologized for having broken Big Ben on our honeymoon on August 5, 1976.  But this is a picture of another trip, with my BFF of over 40 years.   I don't talk about her too often, trying to maintain her privacy to SOME degree.  As soon as I get her permission you'll hear more about her! 

Spring came around and I realized I could take pictures myself!  You heard  about my  love of gardening, which was something that fibro and CFIDS/ME/CFS took away from me...though the post was about the on/off phenomenon of the DD.

Rather early on you learned about my love of family and our love of laughter....

And rather early on I got into skincare - seemingly an odd direction to go into but evidently readers loved it: those are always highly read posts.  We can't always be our illness and it does tie in with our funky skin...

Soon you learned about my Russian/Ukrainian background, especially when "my" Easter rolled around - at the "wrong" time...

Often just the time of year would give me a topic to write about....

You saw some of my childhood pictures but there were lots of things that haven't been discussed on that front!  (Believe it or not!)

I've not had a chance to talk about some of my family and what I discovered about  relatives when my mom and I went to Ukraine and Russia after the Soviet Union fell apart...but there's still so much more to go into with fibro and CFIDS on that front...intrigue!

As I became more sure of myself I ranted about the NIH, the CDC, the American College of Rheumatology and the fact that into my fourth decade with this wretched illness, things have not improved much... For SHAME!!!!

We talked about fibro and CFIDS/ME/CFS symptoms, especially sleep, though there's still so much more to say and places to go with that alone.  I tried a few book reviews but my health was such that for the first time, as far as I could remember, I wasn't able to read....

I've not touched too much on our family's love of travel, here on a school trip to Spain, with two of my children and the teacher in charge.

Although you did learn of how my second child went from this....

...to this...

...to my flying through 12 time zones to Kuala Lumpur and Malaysia for my son's wedding....

There has been so much more.  For example, I made friends with a few followers.  A few helped me with my own problems and I'll be indebted to them for ages.  I joined twitter.  Although I'm still trying to figure my way around on that front, I was rewarded with a new family made up of friends who have been full of encouragement, not to mention laughter.  

Because of social networking, I've connected with old friends, near and far.  I've made new friends, near and far.  I've gotten encouragement from camp friends from my past, such an unlikely source.  I've gotten encouragement from high school friends, from places that I never expected or with circumstances which are too complicated to explain or believe - and I'm so thankful for each and everyone of those friends.  

I've had surgeries, more complications - thanks to this dreaded fibromyalgia and CFIDS/ME/CFS - but I've learned from every person I've been in any sort of contact with over the past year and am indebted to them for that alone.   

So a huge thank you to everyone.  I can never express how thankful I am to you all.  I know that when I see those thanks written sometimes in other places, I too often think, "how much can they mean it?"  

I now know that they really DO mean it -I just hope it's a fraction of how much *I* mean it, however!

So, as always, I wish everyone the best of health.  I hope that those not ill stay that way and that those who ARE ill feel their very best, only better.  Thanks you so much for being here FOR me and WITH me. Tonight when I watch the acceptance speeches at the Oscars I will understand how hard it is to truly thank everyone. We've come full-circle on this little blog.  I only hope I can keep up with it another year because it's given me so very much.  

In the meantime: ciao and paka!  And a huge THANK YOU! 

Friday Tidbits: Dealing with Flares

Pathetically, the crash is written all over my face (in Budapest). I just wanted my bed.

I was recently asked if I could write a piece on what to do when we fibro's - as well as those who have CFIDS/ME/CFS - have the misfortune of having a "crash" or a flare.  I found it a bit of an amusing question since I think I may be one of those patients with CFIDS and/or fibromyalgia whose life can be described as "you can't teach an old dog new tricks"!  However, after scratching my head a bit, I managed to figure out a few "tips" which are such a part of "my norm" that neither I nor my family notice any longer!  On the other side of the spectrum, there are tips which may help some, though not all, due to the severity of the illnesses. I so wish that Fibromyalgia and CFIDS/ME/CFS had degrees as to severity of illness, as is the case with cancer and other illnesses.  Heck, I'd even love it if we could finally get a great "name" for our ME description, but that's asking for miracles at this point, I'm afraid.  We're so insignificant to the world that we STILL can't all agree on a legitimate name.

But first, what is a flare?  Basically, it's when you have a situation where you get sicker for a relatively short period of time, usually caused by overdoing it, being under too much stress for far too long, the man on the moon down in the dumps about something, the fish in the sea upset about "global warming" and any other random factors. Any one or any number of the fibro and/or CFIDS symptoms often experienced by an individual can worsen. When this flare continues unabated, however, and you get no better, then it's no longer a flare but most often a worsening of the condition of your general (fibro and/or CFIDS) health.

The best way of remedying a flare, of course, is not to get yourself into a situation that will risk putting you in jeopardy of having a relapse or flare in the first place.  If you've  been a reader of this blog for a while now, you'll know that I've done some pretty silly and foolish things which my body is absolutely outraged about, as well it should be.  

Does anyone remember the Academy (Oscar) winning movie "Network'?   It was especially famous for a particular line, "I'm mad as hell and I'm not going to take this anymore!"  Well, sometimes you're really sick and tired of being sick and tired.  You have to be "normal" even for a short time to maintain your sanity. For example, what sane person flies through twelve time zones to see her son get married?   Not a completely sane one, I'm afraid.  However, desperate times and all that!  Of course, that's the sort of reasoning that gets me into Trouble, with the capitol "T" intended.

But "silly behavior" is also things like going out and drinking.  If you have fibro and/or CFIDS/CFS/ME, for heaven's sake, then you are almost allergic to alcohol.  Alcohol in and of itself worsens your overall health.  It's a rather long and painful sort of self-harm.  So stop it!  DEAL WITH IT!  Grow up!  Period.  Fini.

Other acts of foolishness are also destructive to your health.  We all know about the horrors that any sort of stress can cause.  There is, for example, actual literature describing that long-haul flights are also a circumstance which those with fibro and CFIDS should avoid - and here I speak of literature for doctors, not just any old blog or random book.  

One example would be the case of Alastair Lynch, the famous and legendary Australian Rules Football player who came down with CFS/ME in 1995.  After much "running" around to various doctors, Lynch found himself in California with Dr. Jay Goldstein (whom I cite in one of the introductory pages at the top of this blog).  Dr. Goldstein advised Lynch to stay away from long flights, among other things.  I read Lynch's book while in Australia visiting my son - who was in school there - and thought to myself: "well, now we know why I was bedridden for two years after each of my first two trips to Oz!"  (Of course, the next thing I thought was, "NOW how do I get home???)  At any rate, Lynch didn't quite believe the good doctor and became so sick that he had to be wheeled off the plane once he arrived in one of the farther cities from Brisbane. (As if ANY major city is close to any other in Oz!)  After this, he was allowed to fly only to games which were less than a two-hour flight away.  Any longer and he went into flares which started on the plane, freaked out the plane crew and continued until he got home and rested, thus defeating the purpose of flying to the game in the first place. 

Note: This is all from memory and since we all know that my memory is not one of my stronger suits, we'll have to agree that I may be off on some of the details.  One day I'll find that book in this "disorganized" house - when I have the energy to actually hunt for said book - and will write a post on it all.  In the meanwhile, you get my drift.

But getting back to recovering from a flare...

First of all, before we go any further, I'd like to suggest that you have a list in place of what helps you get through flares BEFORE you even go into your next one!  This is because once you're in a flare, it's hard to remember what works. I have to admit that I'm awful in this aspect but I've been spoiled.  Hubs and my kids are pro's at what helps me.  Me: I'm such a lost cause that I don't even have a list of the meds I take and rely way too much on hubs and daughter.  This may be a good way to keep a family together, but not a recommended way of doing things.  But then we've long ago established that I'm a bit of a hypocrite!  But more of that later in this post.

Keeping a list also helps one feel a bit more in control of what's going on - for the most part.  I think I'm the odd duck who thinks that preparing for a flare by writing a list means that I really AM sick and thus I'll need to accept the truth about my health - or lack of it.  So I just stay away from it all.  Weird, I know!

But on to help with flares.  Let's simply say that you probably also have this not very helpful type of personality, which under extreme circumstances decides it has to do certain things as life comes along, no matter the price to be paid later on.  (I can just see all of you nodding your heads out there!  You KNOW who you are, don't you, and you know what I mean!)  Here are a few things that may help you deal with the dreaded flare, hopefully helping you shorten the time it takes to get over the awful hump. (Why do I feel as if I'm contributing to the delinquency of a minor?)

• Give yourself time to rest up for any trip or affairs (get that mind of your's out of the gutter if you please) beforehand in order to have your mind and body at their optimum.  My rheumy likes the "basic" formula of two day of building up "health credits" and then at the very least two days recovery time after getting home, with complete and total rest. If you're like me and don't listen, you run the very real risk of slowly killing off your body, as I did with the pneumonia, sudden hypothyroidism and then that cherry on top: the gall bladder surgery.  This is NOT a good way to go, folks!
• Taking baths with salts which contain magnesium (e.g. Epsom salts) are a life-saver.  Magnesium helps pain in general (post coming up!) and speeds recovery.  Do a magnesium salt bath often! 
• Get as much sleep as you possibly can because that's when your body resupplies your HGH and other goodies. Sleep is not just for beauty.  It also helps your body repair whatever damage has occurred the previous day.
• Drink plenty of fluids, especially water, to get rid of the toxins in your body.
• Stay as far away as possible from toxic people.  You know who they are! 
• In a perfect world, get an IV nutritional (e.g., Myer's cocktail).
• Stay as far away from food triggers as possible.  Hopefully, you should know what does and what doesn't work for your body.  Sugar is basically poison to me and my body can't seem to survive at all without animal protein, and a LOT of it at that. (And since I DO know my body so well, I'm not about to jump on the latest "fad" train: it causes ME too much harm to do so!)
• Find distractions such as watching a few DVR'd TV shows or favorite movies (funny if possible, for the endorphins that are released).  Keep a supply from the library on hand or buy them and keep them for those times when you really need them.
• Try to stay as positive as you can.  Keep in mind that "this too shall pass."  Personally, I hate this point because to me it's like telling a person with depression to get over it and then smack them in the face, but it works for some.  
• And you know what?  Don't believe half the crap that's written out there and that includes books written by some so-called fibro and CFIDS experts.  I personally think that it sets us all up for failure.  There: I've said it!

We've come to a huge bugaboo of mine. If a person has Type 1 diabetes (the original one you're born with, not developed from years of overeating) you don't tell that person to shut his or her mouth and also stop the insulin.  That kind of thinking is insane, cruel, devastating and eventually fatal!  So try yoga, try meditation, try food diets, try exercise.  But half the books out there are nothing but BS.  Yes, I know I sound harsh but I'm also fed up with the propaganda that's out there.  It is NOT in our heads.  Yes, attitude helps.  Yes, being as positive as you can be helps.  But it is NOT a character flaw to be ill with CFIDS/CFS/ME nor fibromyalgia. Moreover, we all have differing degrees of fibro and/or CFIDS!  Some are able to work, if they modify their activity level.  Others are bedridden and can barely see to their personal needs.  

Furthermore, I hear "ask people for help."  Guess what?  Help only helps but for so long.  Can anyone honestly expect people from my church or the kids' schools to help me out for three plus decades?  Get a grip on reality! (Geez!!!)

Anyway, that's my political incorrectness for the day.  Again: Deal with it.  Try the best you can but don't beat yourself up.  Our governments, our politicians and our medical establishments need to step up and help us. Period.  Full stop.  So what if our countries can't afford to subsidize our disability?  We paid our taxes when we were productive members of our societies and it's about time that these institutions step up to the plate. In return, we need to step up to the plate and stop foolish behavior - which, I know, is rich, coming from me.  

At any rate, as always, I hope everyone's doing their best, only better.  Ciao and paka!  And stay away from those flares! ;)


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Fibro, HGH and DHEA...

You mean you're STILL looking for what's going wrong?

I know I keep going on and on on about Human Growth Hormone "Deficiency" (I have trouble with the term but that will have to keep for another post).  You may very well be thinking, "here we go again," but there really is good reason to go on about HGH today!  Last night on twitter I happened to mention that blood work from the visit to the endocrinologist was slowly trickling in. Yawza!  My doctors and I are in a bit of a surprised state.

Fortunately, my thyroid tests are thus far all normal.  That is, the thyroid medication and dosage seem to be working a treat.  So it looks like THAT seems to be under control though to be perfectly honest with you, I personally have a problem with all thyroid testing and its accuracy.  (Another post, folks!)  But be that as it may, we need to look elsewhere for what the REAL problems may be and today we have two clues as to what may be causing me to feel as sick as I did back in 2001, if, that is, it's not the worst I've ever felt.  Period.

My doctor checked for a hormone called DHEA (Dehydroepiandrosterone).  This is not new territory for me. For those who aren't familiar with DHEA, this is a hormone that both men and women make and is released by the adrenal glands, located above each kidney.  This hormone is necessary for many bodily functions including resistance to infection, muscle toning and energy level.  In the past, I've actually been low in my DHEA level and have had to take supplements to get my levels where they should be. 

DHEA levels can actually fluctuate based on pain levels, nutrition, sleep and the presence of other diseases. Consequently, the levels should be taken (in the form of a blood test) periodically, some even advise every month or two.  (If we tested me every month or so for everything, I'd have no blood left, so we do so only about every year or so!)  Normally, DHEA levels decline with age - isn't that often the case?  Sigh!  In the past few years my DHEA levels have been pretty much spot on (hallelujah! Something that's right with moi!).  However, my most recent test shows that my level is about a third of what it should be.  (What luck!)  My doctor will be prescribing DHEA in pill form - again - to be taken once a day and we should be set on that front.  To tell you the truth, I've never felt much of a difference in taking the DHEA, but it makes the guys so happy that I just let them get their jollies with me when they can.  (Did that sound improper?  I assure you it wasn't meant to be anything but amusing!  I get my jollies where I can as well!)

However, the part that HAS intrigued me is that in taking my most recent blood work we checked out my HGH levels again, just for "fun," and there we were in for a surprise! (See previous links to HGH posts here, here, and here.)  

To be boringly accurate, one doesn't actually check for hormone levels but for by-product levels of IGF-1 (Insulin-dependent growth factor 1).  This chemical has a very long half-life so a random blood test will give the doctor a good idea of how much growth hormone has been released from the pituitary gland in the brain over the last few days.  As we age we make less and less growth hormone: this is normal.  However, as Bennett described in the literature beginning back in 1992, HGH levels in people with fibro are all too often low and in 1995 Bennett showed that growth hormone injections improved the quality of life for his fibro patients.  However, because adult growth hormone deficiency is thought to be rare, expensive and hard to obtain, doctors do not check levels of IGF-1.  Because they do not see cases of growth hormone deficiency the concept that it is rare in adults got solidified in physicians' minds, further complicating a convoluted history. (Understatement!)

OK, time to take a step back for a moment in order to understand the whole myth, "secrecy" and even legend of the whole HGH issue, though in very "Cliff Notes" style.  The whole issue became muddled when abuses began with the misuse of HGH.  In children, who indeed DO need HGH in enormous amounts in order to grow, etc, the hormone was suddenly abused by some doctors and parents who had children who did NOT have HGH deficiency but because they wanted their children to become better athletes and thus the whole system got out of whack.  Further complicating the system was when ADULTS wanted to look younger and abused the hormone for cosmetic reasons.  Do we even need to go into the abuses on behalf of adult athletes?  

The government tried to control the abuses of the hormone and imposed controls which the insurance companies took advantage of, thus making a cluster you-know-what.  When I was diagnosed with HGH deficiency in 1999 it took two YEARS for HGH to be approved on behalf of all agencies involved and we could not buy any for love or money, even though I was lying in the hospital dying with all of my organs shutting down when, finally, the HGH was shipped to us via courier.  It's still very difficult to get HGH (not available in a pharmacy but only each month, still via courier, after a call for a delivery time, date and place each and EVERY month! Talk about restrictions!).  HGH is still very difficult to obtain with lots of testing needed to "satisfy" all the powers-that-be, although much easier to obtain than back in 2001.  Now you have the back story in a nutshell, though trust me, a book could be written on this alone.

Back to today...

I just learned that my most recent IGF-1 level had dropped from a normal value about six months ago to a much lower level now.  This is quite unheard of.  We normally go to my endocrinologist to make sure that my IGF-1 level is not too high since as I age, we need to keep the level at the number that someone my age would need and NOT any higher.  Now here we are, stunned to find ourselves with a much lower number than what we ever could have imagined.

This is also surprising because my dose of HGH had not changed for many years, since 2001, in fact.  The last time my levels were taken was in September.  What could have happened to change a number so quickly or even to change it at all?

There are several possibilities that come to mind:

• Although my pneumonia was probably developing earlier, it wasn't diagnosed until October 11.  The pneumonia may have weakened me and made me more prone to develop a lower hormone level.
• At about the same time, I had my gall bladder and stones removed.  This is major surgery (as I found out the hard way!) and is a major stress on the body.
• The holidays certainly didn't help my general health.
• The remodeling and redecorating (which seems to be a permanent state of affairs here in this house) has most definitely not helped.
• We've gone from a family which has had embarrassingly great health (except for MOI - must give that caveat again!) to a family with embarrassingly BAD health with each family member undergoing major surgery in the last year and a half.  Talk about stress and worry!

At any rate, I include this info because again, I really want people out there to realize that DHEA and HGH levels are so important and frequently problematic in fibro.  Please do yourself a favor and talk to your doctors about this if you have unexplained fatigue, low stamina and muscle weakness.  Also, a deficiency of these hormones can make you flabby (as I can attest!) and unable to lose weight, no matter how much you try (again, I can attest!  Sadly!).  Again, previous posts go into other aspects of lack of HGH (see search box if need be).

I don't know that we've found my Red October in the Hunt for it (see previous posts on that) but at least we have one small explanation for my recent deterioration. We just need to see if this is yet another red herring or the real deal.

As always, hoping that everyone's feeling their best, only better.  Ciao and paka.



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"Woeful Me" ;)

Woeful daughter, "But DAAAAD!"

Today's post is not an easy one to do because for the last couple of weeks I've been feeling under the weather a bit more than usual.  Several times I told hubs that I wouldn't be able to write a post tonight but in the end my guilt got the best of me!  My life has also gotten a bit busier than is good for me - quite the opposite of what I should be doing at this stage, which is getting a lot of rest.  However, life happens and there's not much you can do, no matter how much you try.  Right?  Right!  So onward! 

• The week before last, I did end up going to see my endocrinologist since I felt it would be too rude to turn down an appointment that was carved out for me after the cancellation.  It was a very good, though intensive, visit.  First, it took me my usual 3 hours to get ready; secondly, my sleep was so messed up that I was up at 3AM for a 3PM visit.  The drive (by hubs, not me!) to see him is a bit long and the visit took over an hour.  Normally I see him at least once a year to make sure that my Human Growth Hormone (HGH) levels are where they should be and that the dosage is correct.  This time we had so very much more to go over, including the after-effects of my gall bladder surgery (hormones involved in this aspect of my health as well) and my adjustment (or "non-adjustment") to the hypothyroidism.  Much was accomplished and many more blood tests ordered.  In other words, he doesn't like where I stand some 4 months after the diagnosis of the thyroid problem.
• Then, as luck would have it, two days later we had a meeting about the progress of the redecorating, remodeling, etc., and how it was coming along.  Let's just say that it was off-the-chart stress.  Fini.
• On top of all that, even hubs started getting worried about the disappearance of my jewelry and we've been hunting it down every chance we have.  I thought the post on the "blue men" would dissipate any nerves regarding this issue.  That is, I thought I'd be able to put things into perspective about it all and let the jewelry appear when it would, but no such luck.  The more we hunted, the more I "yelled" at hubby and the more nerves were frayed. (Ahem.) This morning, after almost two weeks of jollies on the part of the blue men the jewelry reappeared in our house.  Hubs, the stalwart one, was almost in tears because I had been so upset.  (As Marlo Thomas, Rosie Grier and the kids would sing, "it's alright to cry!"
• Which brings me to the last bit.  I've been feeling so ill from all these events (and MORE!).  My health simply keeps getting worse and worse.  I find myself falling asleep at the oddest times for many hours, then not being able to fall asleep when I've had pain out the wazoo.  And it's been the craziest things, too, which have been bothering me!  For example, last night I suddenly developed bursitis in a cheek (not one of those on my face!) and it took three well-aimed shots to get that under control so that I could move.  Suddenly, I had not only one leg I couldn't count on - the one with the neuropathy - but a second one which was collapsing on me, the one with bursitis.

Would it be too trite to say that in the last couple of weeks it feels like the old song, "if it weren't for bad luck, I'd have no luck at all..."?   

One good thing, however: despite how I felt, I only cried once.  It could have been a river but at least I was able to control that part of my life.

As always, hoping that everyone's feeling their best, only better.  Remember: don't be like me: it really IS alright to cry!  Ciao and paka! 

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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