Friday Tidbits: Vanity

This week I decided that I would live one of my rheumy's "rules."  He recommends that if you're going to do something, you build up "health credits" for two days and then rest for two days after the event.  It's been tough but this week I've tried to follow the first part of his formula as much as possible: the taking-it easy-part.  OK, I cheated a bit by being on twitter more than is good for me, combined with writing a couple of posts that took quite a bit of work.  But for me, that's really being magnificently obedient.  I don't listen to orders well, if at all.  It's an inherited family trait, so I come by that honestly.  Yes, that's my story and I'm sticking to it!  (Somehow, I know my rheumy won't agree!)

And the reason for this sudden "listening" to ANYONE at all?  After all, we re-scheduled a much-needed doctor's appointment and a much-needed day of planned activity for the house.  What can possibly be worth that?

Why vanity, of course: pure and simple!

And here I am breaking one of my mom's cardinal rules: never tell anyone your plans before you actually do them.  Superstitious Russian/Ukie that I am, I still more or less can't get over that bit of "indoctrination."  So, before going any further, I'm saying "knock on wood" and throwing in a sort-of Russian/Ukie equivalent: "Tphoo! Tphoo! Tphoo! Just not to jinx myself."  

I'm finally getting sprung from the house for a day of "being a girl."  I've not had my hair done since before my son's wedding, and that makes it almost nine months.  Good heavens!  I could have had a baby by now were I anywhere near child-bearing years, which I most definitely am not.  I have discovered my real hair color and then proceeded to let the whole world see it in one of my pictures.  (Oh my!  How I've changed since starting this blog: is NOTHING sacred anymore?)

I debated long and hard as to whether I would go back to my regular hair stylist/colorist.  I started with her because she can work such magic on someone who has about six hairs on their head.  Finding it more and more difficult to make the long trek out to the "big city," I'd pretty much decided that I should start going local - especially after my last surgery.  However, considering how much trouble I've had with my hair for the past two years, I didn't think I should start in on anyone new at this point.  After all, I've had five bald spots in that time period, and I'd like to know the progress of those danged spots.  They were growing in, thanks to the Rogaine, but since my surgery in October, the Rogaine program has pretty much been shafted. (A pun!)  I have enough problems.  

To add to the (hair) complications, I've also developed hypothyroidism and my hair has been coming out, if not in clumps, still in disturbing amounts.  I've actually considered - and discussed with my hubs and daughter  - if shaving my hair wouldn't just be best at this point.  After all, I remember my mom telling me that when she was growing up, the girls in her area of the Ukraine periodically had their hair shaved so that it would grow out nice and thick, especially for luscious braids.  However, I don't see me wearing braids.  Thankfully, those days are behind me.  Further faulty reasoning on the part of my mom is that she never had the nerve to shave my hair when I was a child.  Furthermore, my daughter's hair is every bit as thick as my mom's.  They both have enough hair for any five women combined and hair people are completely drenched half-way through any work done on my daughter's hair.  And then just as I think I'll go on and shave that head of mine I remember that I don't have the best looking skull in the world AND that my BFF told me that it would itch.  So, it's back to the "big city" I go!

I'm also going in for the tinting of my eyelashes as well as getting my brows done: the waxing of the peach fuzz is imperative if you want to see the peach fuzz that actually constitutes what are considered to be my eyebrows.  Dying the little hairs that are there is needed to give me something to follow when I attempt to pretend I have brows with the magic of powder and pencils.  (For my desperation on this subject, the brows, you can go to part 1, part 2, part 3 and/or part 4: they're all pretty popular posts!)  At any rate, it's really quite pathetic but I DO try my best.

As for the jinxing part.  Oh, there's no end to what can go wrong.  The weatherman said that it's supposed to be nice on Saturday.  He's never right!  Worse, either my eyebrow/eyelash maestro could be out for some emergency (like last time) or my stylist/colorist can have her own emergency.  Or I could have my own emergency.  I'm sure that before Saturday, I'll have come up with a whole list of things that can go wrong!  

But I'm hanging in there and hoping it all goes well.  Nine months is a long time to go.  Any mother out there can tell you that. 

And there's the added pleasure: I absolutely despise going to get my hair done.  Give me a root canal any day...please!  I beg of you!  

In the meanwhile I hope everyone else has a wonderful weekend and feels their best, only better.  Ciao and paka! 

How Safe Are Silicone Breast Implants?

It's been said by more than one wise man (and woman!) that if you don't know history, you're doomed to repeat it.  Sadly, one of the things which we are definitely doomed to repeat is the development of fibromyalgia and other painful complications as a consequence of silicone breast implants.  To say that I'm frustrated about this turn of events is putting it mildly.

About 30 years ago, a group of doctors observed that some women who had had silicone breast implants were experiencing muscle pain, joint pain, fatigue, and problems with memory and concentration.  We're not talking just a little bit.  These problems were so bad that there were women, for example, who had careers juggling millions of dollars for their companies who suddenly couldn't write out a check.  These were women, some of whom had had breasts which had become so grotesquely deformed as the implants started leaking, that their systems were being poisoned.  At the time when this became a rather huge problem, the vast majority of doctors did not link these problems to the implants. Not surrisingly, they attributed these symptoms to well-known, established inflammatory connective tissue diseases, such as lupus, rheumatoid arthritis and scleroderma.  That turned out NOT to be the case.  (Whoops!  Big Whoops!)

The medical establishment made the mistake of saying that silicone breast implants did not cause painful musculoskeletal  problems.  However, just because the silicone breast implant problems didn't cause lupus, rheumatoid arthritis and scleroderma didn't necessarily mean that they did not cause other significant disorders in some patients.  

In the early 1990's, there were observations of a large number of implant recipients who developed either fibromyalgia, myofascial pain syndrome or both after implantation.  Not every woman developed these problems but enough did to get the attention of some fibro researchers.  In 1994 a silicone breast implant settlement agreement was made, the details of which are complicated.  However, the bottom line is that woman could apply for compensation if they developed musculoskeletal and/or neurological problems after implantation.  Very strict criteria were required by the courts in order for compensation to be made.  This was an effort to avoid patients suing Down Corning, the manufacturer of many of the implants.  (Down Corning applied to the courts and was granted the opportunity to avoid lawsuits in order to avoid bankruptcy. Monies were set aside to compensate women who met the strict criteria for the settlement litigation.)

Judge Pointer of Alabama required that patients be examined by a board-certified rheumatologist or neurologist and have the findings submitted to a review board which then determined if criteria were met and compensation would then be awarded.  Millions of dollars were paid out to thousands of women even though they did not have conventional rheumatologic diseases, although there was a section for patients who developed lupus after implant surgery.  

Clearly, these implants caused problems in many women, not just here in America.  To test the theory that the implants were indeed a legitimate health hazard, researchers chose to go to South Korea and obtain results with South Korean women who had had silicone implants -because there was no litigation to muddy the issues.  They found, much to their surprise, that the South Korean women developed the same problems as American women after implantation.  There was definitely something going on, and it wasn't good!   

So, why bring this up now?  To my horror, silicone breast implants are making a comeback.  No one should undergo this type of surgery without being informed as to the potential hazards even if the implants don't rupture, and the surgery doesn't go as planned.  True, the risk of getting lupus or other connective tissue diseases is low but the risk of getting a chronic, potentially debilitating condition is NOT low.  In fact, many women who develop fibro or myofascial pain syndrome after implantation may be extremely confused as to the cause since the FDA had given its approval again and these woman were probably told that the silicone is now safe.  

Today many women may opt for the saline-filled implants, but one must keep in mind that the saline is contained within an envelope made of silicone which could easily pose a threat to their health also.  

I find it disconcerting that now, in 2013, the medical community has not learned its lesson.  The Mayo Clinic, for example, has written the following on its website, with regards to a ruptured silicone implant:

"Ruptured silicone implant

If a silicone breast implant ruptures, you might not notice right away - or ever - because any free silicone tends to remain trapped in the fibrous tissue (capsule) that forms around the implant.  This is known as a silent rupture.  

Leaking silicone gel isn't thought to cause systemic or long-term health problems — such as breast cancer, reproductive problems or connective tissue disease, such as rheumatoid arthritis. Still, a ruptured silicone breast implant might eventually cause breast pain or changes in the contour or shape of the breast.  

If this happens, your doctor will likely recommend surgical removal. If you wish, a new implant can usually be inserted at the same time. 

If an MRI scan detects an implant rupture but you don't have any signs or symptoms, it might be up to you and your doctor to weigh the risks and benefits of keeping the implant in place or having it removed." ~Mayo Clinic

After reading this excerpt, a potential patient gets the impression that aside from local problems such as infection or leakage, there are no adverse health consequences from the implants.  And yet this is completely at odds with the medical literature and the experiences of many physicians and patients.  (I have my sources.)


I do not write this to bash the surgeons, the implant manufacturers, nor the FDA.  I just want women to be informed regarding the major risks and complications of this surgery.  If a woman decides to still go with the implants with informed knowledge, God speed.  However, every woman should know what the risks are, even though it's been 25 years since those days when everyone was talking, writing and suffering from this problem.  How easy to forget inconvenient findings and to forget what a generation of women have already gone through.

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


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The Perils of Exercise

My mom, who CAN and DOES exercise first thing every single morning without fail.  In her 70's on a 3-week marathon through Europe. *I* couldn't keep up with her!

We've all come across many articles extolling the virtues of aerobic exercise as a treatment for fibromyalgia. Graded exercise treatment is the subject of several studies in patients with CFIDS/ME/CFS in Europe.  Here too, studies show benefit with few adverse effects.  It has become so much like propaganda or politically-correct medicine that one doesn't dare mention the fact that in many severe cases of the DD, exercise is detrimental to one's health.  However, allow me to let you in on the real scoop.  Rheumatologists in the know are aware of the futility of recommending exercise for many of their severely affected patients.  These are the  "train wrecks" who are so far gone that despite conventional treatment, they are still unable to function or endure the pain in their lives, despite all methods recommended and tried.

Exercise doesn't work for everyone, and certainly never worked for me.  In fact, exercise made me much worse and made me feel like a failure.  What was I doing wrong?  Was I not trying hard enough?  These questions haunted me because I am extremely driven and have always been motivated to get better.   

1996-97 was a really rough year. I was dying.  All avenues had been exhausted. I was desperate.  I knew that something had to give.  My life could not go on like this any longer.  I got over the very worst effects of the exercise propaganda.  Then I sought out other treatments (a further post on this turn of events to come!) which were far more successful and which allowed me to do things I never thought I'd be able to do again. These treatments relied heavily on my resting and allowing various healthcare practitioners to treat me and strengthen me so that my body had assistance healing itself and thus I could be more active.  Heck, I was so far gone at this point that we were grasping at any straw that we came across.

The treatments I received were aimed at what had been labeled as "adrenal fatigue" in the 1940's. The clinic's director and founder, a doctor whose experience of over 50 years in the clinic alone, had long ago come to the realization that forcing extremely sick people to exercise is NOT a good idea. This goes for fibro and CFIDS especially.  This clinic was a place where I would estimate that approximately 80% of the patients were fibro's and those with CFIDS.  Furthermore, this was no fancy clinic with marble foyers and state of the art chairs, exam tables, luxurious waiting rooms.  No, it would not be much of an exaggeration to say that it was almost a mom-and-pop operation.  It got results and that's why people came from all over. In this clinic the medical director employed therapists and doctors who specialized in everything from chelation (for heavy metal toxicity) to applied kinesiology,  rolfing, nutritional IV's, acupressure,  acupuncture, homeopathy, reflexology, colonics, diet, counseling (mostly spiritual) and more...you get the idea, I hope!  

I had an epiphany of sorts just recently.  It was a WOW! moment.  At NO time was I - nor any patient - encouraged to exercise!  I  - as well as many others - was too sick.  In fact six months into treatments, the Vietnamese-born acupressurist, a man of few words who had spent six years in a North Vietnamese POW prison, suddenly said to me in a quiet voice, "First time I meet you. I never see someone who dead but still alive."  Oh, he was GOOD.  Sooo very good at what he did.

It urks me: how can the medical establishment possibly push exercise on their sickest patients?  I bring up the "holistic" clinic because it was successful with MANY patients, including me.  It took a year of hard work (to be described in future postings)  but I went from "dead" to being healthy enough to fly to Europe to visit my daughter.  We now know that many patients with fibro and CFIDS have co-morbidities like growth hormone deficiency, DHEA deficiency, electrolyte abnormalities, myoclonus, insomnia, autonomic nervous system dysfunction leading to orthostatic hypotention and a host of other problems.  Are the advocates of exercise crazy?  Unless you take into account the uniqueness of each patient, a blanket recommendation for exercise leads to disaster.

My health improved (understatement of my life, perhaps) and my other doctors who were trained in and practiced western medicine were amazed at my progress.  Shocked, in fact.  To paraphrase my GP on one monthly visit, for example, he said, "I don't care if they tell you to wear cow manure on your head.  It's working!  Keep it up!" 

This post is an just an introduction to further discussions on treatments for fibro and CFIDS and what to avoid.

And because I know that many are wondering why in the world am I still bedridden?  The clinic fell apart once the elderly (read "ancient") head of the place was finally forced to retire due to old age.  I mourn that loss. His clinic saved my life.  I could use that now, especially when I often feel like a failure because I can't exercise nor do a tenth of the things that are "promoted" at this point in time by the current fibro/CFIDS "fads."  Like the weather in Seattle, in my heart I know that if I wait a little while, what is pushed now will become obsolete, only to return, go away, return, over and over again ad nauseum.

As always, I hope all are doing their best, only better.  Ciao and paka! 

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

Myofascial Pain & Fibromyalgia 101

What a fall!

How often have too many of us heard a fibromyalgia patient say that his or her fibro started after some sort of traumatic event such as a fall, a physical assault, or a motor vehicle collision?  Often they claim that the fibro did not come on quickly but that it took many months or years to develop.  How can this be?  What's going on?

For today's discussion, let's use the example of a neck injury.  Surely many, if not most cases of neck (i.e., cervical) strain and sprain, resolve themselves within a few weeks.  However, some don't.  For a variety of reasons the neck, pain and stiffness persist despite medical treatment.  This is how a condition called "myofascial pain syndrome" (MPS) frequently develops. (See links to Dr. Travell here and  here and myofascial pain here and here.)  A muscle - or muscles - hurt as a result of the trauma,  the area doesn't heal, and, in fact, there's a new development: abnormal areas which are called "taut myofascial bands" which contain irritable places called "trigger points."  These trigger points can be extremely painful when stimulated by direct pressure on them or by stretching the muscle in which they are found.  (Understatement of the week!)   To make things worse, the pain may be felt not only WHERE the trigger point exists, but in distant areas as well.  For example, a trigger point in the neck can cause headaches, shoulder pain and/or upper back pain.

Some people get over MPS with standard treatment such as massage therapy, trigger point injections, pain medication, muscle relaxers, and so forth.  (All of which will hopefully be addressed in the future.)  However, other now-patients develop a chronic form of MPS, and still others develop fibromyalgia on top of the chronic MPS.  And how is it that this happens?  Well, I'm absolutely tickled that you asked!

It's known that fibromyalgia develops in patients who have a deficiency of deep sleep.  If the MPS sufferer is in chronic pain and sleeps poorly, he/she is at risk for developing fibro.  

There are complicated mechanisms involving "expansion of receptive fields" which also involve the neurotransmitter Substance P (for more on Substance P link to here and here).  Substance P travels from the muscle that was originally injured to other muscles causing them to hurt in turn as well.  If this happens long enough, there can actually be changes in the brain which can alter pain perception through a mechanism called "central nervous system neuroplasticity,"  This can take many months or years to evolve thus leaving the injured person with a widespread pain condition despite everything originating with "simply" a neck injury.  In 1997, this was explained in great detail in a study done in Israel by Drs. Buskila and Wolfe which was published in the journal, "Arthritis and Rheumatism."  

So, there you have it.  A neck injury can be resolved in a few weeks.  Unfortunately, it can all too often develop into MPS, and even evolve into fibro if the chronic pain condition is not addressed and controlled early.  The best way to treat this type of fibro is to prevent it. 

Can you believe it?  A short post - and you didn't think that was possible!  

Hopefully, this will allow you to better understand my earlier posts dealing with how pain medications work. In addition, I hope this helps to create a better foundation for understanding other more scientifically-oriented posts about pain in the future.  I suppose I'll have to start on creating a new tab with "definitions" - SOON! 

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


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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.


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

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!


(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!)

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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