The Mary Tyler Moore Show

After

Before

Before

Now what in the world could Mary Tyler Moore (aka Mary Richards for those who remember that iconic show) have to do with anyone who suffers from CFIDS/ME/CFS and/or Fibromyalgia, not to mention another couple of dozens of "invisible" and debilitating illnesses?  Well, bear with me and you'll find out - I hope!

As I wrote yesterday, I'm now living through the second scariest and most agonizing period of my entire life. Number 1 was, without a doubt, when we went through my daughter's ordeals for two years.  She had more near-death experiences than anyone should.  Now I'm living the 2nd worst time of my life.  In case you've forgotten (and who could blame you with fibro-brain going on?) I'm living through the scariest time in my life, from the CFIDS/ME/CFS and Fibromyalgia and all the complications involved, but also in just about every aspect in my life that I can think of.  As I mentioned before, in missing about five weeks of posting, y'all have missed out on a whole bunch of "good stuff."  Of course that depends on how desperately you want to know what's been going on.  (And I do so hope someone cares!)

It's amazing what people know about you and what they don't know.  My daughter was over a few days ago, bringing over some liquid detergent.  I'd run out of two and a half large bottles in about three days.  Daughter was a bit surprised that I was able to do the laundry, especially so much.  

Well.... blow me down!  She, who knows me pretty well, never knew about this quirk of mine.  There are two tells: one is pretty obvious.  When things get bad my green eyes turn blue.  When I get REALLY really angry, I am a cleaning fiend.  Combine that with....

OK.  Where's Mary Richards in all of this?  We need to go back to 1970 and thereabouts.

In college we would sit in the corridor huddled around a tiny TV to watch this amazing show of the woman we all wanted to be.  We wanted careers like Mary had, not the stuff that women were forced to do.  To put you into the era, my entering class was the second one to officially admit females.  The school had to "refurbish" a second dorm for us, evidently very quickly, running out of precious time.  How do I know this?  Well, when we arrived, all fresh, bright and bushy-tailed, we discovered that our huge bathroom had urinals in them (now THAT was interesting since I'd never seen one before!) and gang showers with no shower curtains.  (Try being big-breasted!  Those endowed tried to take 3AM showers for a smaller audience.)  

So, I hope that sets up the picture. Mary Richard was beautiful.  She had the perfect clothes, she had the perfect job, she had it all.  We all desperately wanted to grow up and be her.

During one episode Mary (the one in the TV, not any old Mary hunched on the floor of the hall) was upset about something, and it was a BIG upset.  Either Rhoda or Phyllis made a comment that when Mary gets upset she starts cleaning.  I loved the line and really never gave it another thought. 

So, back to the new age and the new decade.  My daughter comes over to the house and sees that there are a lot of things going on, but especially laundry.  At first I didn't understand why she was so surprised and didn't even give it a second thought.  But then my daughter said a few things that amounted to "I'm so glad you're taking this all so well and that you look good," yada, yada, yada.  

What?  Are you kidding me? In what world am I taking this well?  In what way could all this manic cleaning be a good thing?  

What no one's ever truly realized is that if I'm in a lot of pain I wash floors, cook, bake. They were "sort of" used to that premise though not really, if you know what I mean.  I've been doing this sort of diversionary thing since I was a little kid.  In fact, my mom would say, "children do not get headaches, they cause them." What's a kid to do?  So, I found coping mechanisms along the way. With child #2 I went blind in one eye for a couple of days and a neuro-ophthalmologist  (a rarity even in NYC in those days) told me it was a classic "migraine equivalent."  For the debate on that, this link re migraines will tell you about that little adventure.  

The neuro-ophthalmologist was amazed at my "diversion" tactics.  I can handle a LOT of pain.  Not bragging, just the truth.  In fact, when I see a new doctor, it's hubs or one of the kids who "squeal" that I can withstand huge amounts of pain. I feel like everyone says that and so I don't go there and am embarrassed when said family butts in with this bit of info. 

So, pain I can't tolerate: SPARKLING floors that a baby could eat off of.  Really.  (In fact we need a new kitchen floor and that isn't driving me nuts ONLY because I am at the end of my ropes in this awful stuff that's going on around me!)  

So my poor daughter sees that I'm doing laundry - I love doing laundry and rarely get to do it any longer - and thinks, "mom is doing so well!"   Oh, you little amateur, my baby. You know your mom not quite as well as you thought.  (Can I a put a "huh!" in there without sounding too petty?)  

You see, when I go ballistic, and I mean when it's a rage, sadness, fear, feeling that your own family doesn't understand, unbearable pain that's at the magnitude of a definite 10 but you want to say it's a 20, when I'm completely off the wall in pain with nothing helping me at all, I start cleaning walls, mirrors, play jack-in-the-box (popping in and out of bed, falling half the time), that means that you really do NOT want to mess with me. I'm using all my diversionary tactics.

I've always had a "thing" about cleanliness.  Up until I became a baby factory, I used to take three showers a day: in the morning to wake up and get all that filthy, disgusting dirt that you just know I picked up from the sheets that I just slept on (which were changed every other day), a second shower once home from outside (can't blame me for that!) and a final (number three in case you've lost count), to make sure I'm going to bed clean because it felt so good.  

I vacuumed a not small house every single day, even when I was overdue for baby deliveries, while my mom would practically have a heart attack that I was doing such disgusting things. She also thought it completely immodest and perhaps immoral to be out in public once I was about 6 months pregnant. Yes, it WAS a different world!

So, I had to explain to my daughter how this works.  

Thus far, every pillow in the house has been washed.  That's four beds with at least 4-6 pillows on each bed but for the twin bed with only three pillows but lets not forget the "extra pillows" for when you need different pillow(s) for who knows WHAT reason!  The down ones need to go to the cleaners but I need someone to take them. I have washed every single pillowcase, pillow cover, sheet, duvet cover.  I've washed almost every T-shirt, leggings, nightgown, pajamas and any other article of clothing you can imagine but for the ones that need the cleaners. 

I'm now into the many, many tablecloths and cloth napkins.  (I'm crazy in setting a great-looking table....we all have our vices, admit it!  Come on... it only hurts the first time!)

I've emptied out closets.  I'm organizing jewelry.  I'm organizing makeup (how embarrassing...lipstick story is for another day!!!).  

I'm throwing things out right and left.  Of course, only after enough suffering on making that decision.  It doesn't get thrown out if there isn't enough ANGST.  I do have an excuse for that, however: I am deficient in the "throw things out" gene.  I always throw things out that I end up needing.  I'm still grieving about a purse I threw out twenty five years ago! Yes, yes, I know it's time to get over it, but..... try to see it from my side! PLEASE! (LOL!)

Today daughter stopped by to tell me that she's too tired for Dancing with the Stars and could we hold off another day (tomorrow) to watch it?

And she STILL doesn't understand the premise here.  I am royally upset, ticked, afraid, sick and so many, many other things that only a bucketful of miracles and prayers can turn things around.  And yes, my friends here, on Facebook and on Twitter... I am so very much indebted to you.  Never let anyone tell you that Twitter is a waste of time.  Not only have I made some really wonderful friends here but the support has been incredible (to be gone into at a later date.)

So, as a tease I will write down what I plan to cover, if I can get the "energy" for it:

• Yesterday I couldn't take it with the gardening and will report on that front for all the spoonies out there who love gardening but have had this pleasure taken away from them due to stupid illnesses.
• I plan to write about the 'diet" (way of eating) as requested by a few people on twitter.  I've been putting it off because I barely know where to start but it's the right time for it now... if only I can get my head around it.
• There were the insane ER visits a couple of weeks ago that have got to be heard because this is hitting not just in my geographical area but is taking place all over the US and it's frightening. 

And so daughter understands me a bit better now.  You can't blame her for not knowing this.  How often does this cleaning diversion take place to the laundry and closet level?  If we're lucky, it's about once every few years.  But you get to the point that all the pains going on in your life get to be too much and nothing, other than prayer, helps to get over things as well because a clean, decluttered, organized home ... there are just very few things that make you feel truly at peace.  It's such a small thing, you would think.  But it's incredibly healing.  For those of us sick with the DD, only when you get enough of an adrenaline rush can anything like this be accomplished - at least for me.

Now someone take me out to the back of a barn somewhere and just shoot me!  Talk about pain and paying back for all the stuff I'm doing.  Sometimes you just have a no-win situation.  Rest and the pain is intolerable.  Do something to distract from the pain and you pay in spades.  What's a person to do?  Work on until you drop is my most recent motto because it won't last and at least I'll get something out of it in the end.... or so I hope! 

As always, I hope everyone's doing their very 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!)

Lemonade

I managed to go outside for a few minutes the other day and these are the roses that were still hanging in there.

Hi y'all.  Yes, I'm baaaack - well, sort of.  As many of you have suspected, I've had problems galore, health issues, in some ways just about every sort of issue you can imagine.  I can honestly say that this is the second worst "period" of my life.  Understand, I'm so old that I was in high school when man landed on the moon.... a very LONG time ago indeed!  This is such an awful period that there is no choosing "was this the worse or was that the worse?"  No. This is the 2nd worst thing by a country mile. Period.

Now here's something to fear in a haha way.  I have had some wild "adventures" while I was gone: like ER insanity and so forth.  In fact, so much has has happened to me in the past five weeks that I feel as if I have enough material to write posts for at least a month.  Well, a month-full if I didn't forget so much and could muster up the energy. ;)

I also know that I need to get back on that horse of mine (metaphorically speaking, of course - I don't actually own a horse) and just start writing.  In the part of my brain that isn't full of fear and despair I know that life goes on or it doesn't, all dependent on fate or on a Higher Power.

(Pretend there's a transition here, please!)  

I must thank my readers here for all the support I've received.  I've only ventured to twitter a few times (missing everyone!) and have been  brought to tears for all the support and kindness I've received from quite a few of my twitter family.  Thanks so much.  Your words of encouragement, support, just letting me know you're out there PLUS the many prayers I've received have been more helpful than anyone would believe.  I hope no one ever has to go through such grief.  I still need many miracles but I don't see it happening.

So, thank you blog world, ipad, computers, email and the other social media out there.

If we had to have the DD: CFIDS/CFS/ME and/or fibromyalgia, we've gotten this monster at a pretty good time. We have:

• medications that help somewhat
• no matter what the time or day, there's always someone on the other side of your state, country, continent, who is there.  We can cry, we can act silly.  But we also have those who understand this the hard way.
• We have friends who've come back into our lives after decades and they have been so supportive. (I have GOT to think of another word for "supportive"!)

I want to and am so tempted to write a list of names to thank those who've been here on this blog (and had the energy/courage to makes comments here), on Facebook and on twitter but there are so many and I'm so afraid that I'll leave someone out.  But please know that you are in me and you are helping to alleviate what I'm going through a bit.  It all adds up in the end and you hope and pray that it's enough.  I'm way behind in my connecting with those who were and are there for me and ask you to bear with me.  

Finally, I'm taking one day at a time.  I'm still falling.  In fact, I just fell off my chair about 5 minutes ago, misjudging where the chair was.  Good thing I love my bathroom floor - generally speaking.  We've got the beginnings of a beautiful friendship.  In human terms I'd say that bathroom floor and I are going steady and who knows where that could lead!

At any rate, I'm still living with a migraine (both head and body migraines) that won't leave me, the orthostatic intolerance is almost unbearable, the eyes are doing weird things to me, the myoclonus is almost out of control.  Oh good grief.  We can be here all night if I start listing just some of my "minor problems," so I'm calling it a "day." 

Fear not: there are a few laughs coming up in future posts.  Just working hard to make that lemonade, folks.

As always, I hope everyone's doing their very 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!)

Friday Tidbits: Interview #2 with my Fibro & Pain Specialist

Most definitely: tongue-in-cheek! NOT the med needed for knee pain!

Today I thought I'd talk to my rheumatologist about a seemingly never-ending question of mine - that is, regarding the intensely nightmarish experience I had with Cymbalta. Recently I happened to be present when my GP and my rheumy were talking about Cymbalta and something that was said struck me.  That is, that Cymbalta, an antidepressant, was OK'd by the FDA for treatment of chronic painful musculoskeletal conditions such as arthritis and low back pain. 

Before going on, let me give you the link to our guest's credentials (here!!).  It's simply too tedious to go through all of his qualifications.  And for background on my experiences with Cymbalta, you may go here through many other posts, here where I thought it had a been a good lesson to out-right anger through to suffering like I'd never done before, ending around here.  For those of you who are masochists, there is the search box which will give you more than you ever wanted to know, I'm afraid!   

Now for the interview.

Upa:  Hi, Doc. Thanks so much for agreeing to indulge me with an interview about some of your insight into Cymbalta.  I suppose I should make it clear that you never prescribed it for me, nor did my GP, but instead, a psychiatrist in the hospital did.  You and my GP seem to have been surprised with my reaction to getting off a medication which I'd only taken for three weeks.  Feel free to start wherever you'd like.

Doc:  Hello. It's my pleasure to talk to you. [Upa laughs, knowing better.]  Cymbalta is a psychotropic medication that inhibits the re-uptake of two important neurotransmitters in the brain, serotonin and norepinephrine.  It was first approved for the treatment of depression but that's not surprising since manipulation of those neurotransmitters can affect mood.  When Cymbalta was approved for the treatment of fibromyalgia, however, I was not too surprised because fibromyalgia is thought to be a pain condition that is intimately associated with brain neurochemicals.  I was, however, taken aback by the FDA approving this "mind drug" for patients with mechanical musculoskeletal problems like arthitis and lower back pain.  

Upa:  May I ask you, so we're on the same page here, what IS the difference between musculoskeletal pain and fibro?

Doc: With fibromyalgia, your elbow, for example, might hurt, but it is not swollen nor deformed.   With arthritis, on the other hand, the problem is localized to a particular joint or joints and there is inflammation, the joint is warm to the touch and is swollen.  I don't understand why someone would think that a psychotropic medication like Cymbalta would be the go-to medication for a condition like arthritis.  

Upa:  Can you explain this a bit more in detail?

Doc: In their zeal to find a non-narcotic medication for certain painful conditions, the pharmaceutical companies have tried many different types of medications to treat pain. We already have very effective ways to treat osteoarthritis knees, for example, including narcotic medications which, when taken as prescribed, are fairly safe and effective.  If the run-of-the-mill, not psychologically-impaired patient were to be put on Cymbalta, he might run the risk of such side effects as suicidal ideation, or behavior.  If Cymbalta were ineffective, the withdrawal from that drug may be much harder to tolerate than even withdrawal from narcotics.  

Upa: This answer leads me to want to ask so many questions that I barely know where to begin!  There's always the narcotic question, there's fibromyalgia vs musculoskeletal pain and there are the Cymbalta side effects and withdrawal - and that's just for starters. Perhaps you'd like to choose where to go! 

Doc: Let's talk a little bit about the medications.

Upa: Yes. And I do understand that you do prescribe Cymbalta to some patients.  How do you make that decision?  And what sort of luck have you found?

Doc:  I certainly am aware that Cymbalta is approved for fibromyalgia, however, when I prescribe Cymbalta it is typically for fibromyalgia patients who are depressed.  I am prescribing it more for the depression than for the fibromyalgia pain.  It works well for some patients but is not effective in everyone and I have noticed that when these patients stop the Cymbalta they have very odd symptoms such as palpitations, anxiety, numbness and tingling and the like.  The bottom line is, we simply don't know the long-term effects of Cymbalta nor do we have enough information on withdrawal symptoms, so this drug should be used with caution.  This is in contrast to what we know about narcotics.  They have been around a long time and their effects and withdrawal symptoms are well known.

Upa: So, you're not really surprised that I had that horrible and lengthy reaction to Cymbalta?  And I suppose you don't agree with the thinking of the shrink who said that at least I wouldn't care if I had pain or not? (Sorry: but you know I always have to push the line!)

Doc: No, I was not surprised you had such problems from Cymbalta and a lengthy withdrawal from it. Cymbalta is a VERY powerful medication which affects two brain neurotransmitters, as I stated previously. Why wouldn't you have potential problems from such a strong psychotropic medication?  I am flabbergasted that some individuals, including doctors, fear narcotics but embrace medicines like Cymbalta, proclaiming that the later medication is so much safer than the former.  Even among antidepressants, there seems to be a general feeling in the medical community that medicines like Prozac, Zofolt and Effexor don't have the same risks as Cymbalta.  However, this is my take on it.  I've not done a study but I've been in practice for 31 years and have seen a huge number of patients taking anti-depressants, but I have not seen such severe side effects as patients taking Cymbalta. 

Upa:  Thank you so much for taking this time to clear up some questions I've had on my mind. There are certainly more questions I do have but perhaps you'll return for another session?

Doc: It's always a pleasure.  Call me in the future if you need to. 

*****************

And there you have it, the thoughts of an fibro specialist and pioneer with a very active and long-lived practice.  I hope this offers some of my readers insight and help.  It has for me.

As always, I hope everyone's doing their very 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!)

An Interview with a Fibro Pioneer & Specialist

Recently a reader made a remark about tender points and fibromyalgia - that she was convinced that there were a couple of tender points around the ankles.  I'm not sure whether or not she was joking - as in "it sure feels like there are tender points there!" - or whether she was serious. And so I went to my so-called "anonymous source" on so many things fibro, pain, all things immunologic and rheumatic, and so forth. 

I finally decided that I'm losing a lot of information I can write about because I've kept my big source in fibro so shaded in mystery.  So, I've come up with a compromise of sorts, as well as an opportunity that my readers may well enjoy: 

• First, give my source's qualifications
• Ask him a few questions point blank, i.e. an interview
• Tell you that perhaps I can talk my fibro doc into answering some of your questions. I suppose I'd have to be the judge of which questions to ask, based on how much relevancy they have to most readers and where this blog is intended to "go." (And BTW: I love the twitter remarks but they do get lost so questions are best posted here.)

And so without further ado: what are the qualifications and certifications of my source?

Well, this doc went to undergraduate school in NYC and turned down Harvard in order to enter the MD/PhD program at NYU - where the government paid HIM to try this "MudPhud" program, not sure anyone could handle it. (MudPhud, get it?  It was a derogatory term given to the super nerds by the guys who were there because of their fathers being physicians.)  His PhD is not in some dinky field like "basketweaving in Bornio" but in immunology and he had around 15 papers published before graduating.  He presented many papers in the States and once in Denmark in his student days and won several national research awards.

Internship and residencies were done at the prestigious NYU/Bellevue program and then he went on to do a fellowship in St. Louis, studying under one of the foremost lupus specialists in the world.  His wife pointed out to him that he didn't have the personality for research at an ivory tower (too much his own person to go about begging for grants) and convinced him to go into private practice instead.  There he discovered, much to his shock and dismay, that patients were coming in with strange symptoms of something he'd seen before, "fibrositis," but had pretty much put on the back burner in his fellowship days.

And so it went. He was asked to serve on the committee which established the criteria for fibromyalgia, which took three and a half years to create.  (The youngest person on that committee and in private practice to boot!)  Blah, blah, blah.  Since then he has published in many peer-reviewed journals, asked to give feedback on other rheumtologists' manuscripts/books, has had chapters published in several medical textbooks. He served on a certain pain academy for 15 years in positions on various boards.  (OK, I'm getting bored with all of this!)

He's lectured in and presented his original research in numerous American cities as well as several cities in Canada, England, France, Denmark, Australia and quite a few others.  He has patients who come to him from all over the United States, Canada and a few from Europe.

Yes, he IS board certified in Internal Medicine, Rheumatology and is a Diplomate of the American Academy of Pain Management.  He is a contributing editor to a musculo-skeletal pain journal for which he writes a regular column.

He was also elected a Fellow of the American College of Physicians (FACP) as well as a Fellow of the American College of Rheumatology (FACR).  His practice has been officially designated a pain management clinic by the state in which he practices.

(I'm exhausted.  Someone shoot me. We're not anywhere near the end of the stuff the man has accomplished!!)

So skipping right along: finally, he also does quite a bit of medico-legal work, appearing in court as an expert witness.  

NO more!  On to our question at hand!  (I do have my limits!)

Upa:  Hi, Doc!  Well, you just heard what I've written about you.  Hope you approve.  And you also know what my question for the day is.  What is it with the tender points and fibromyalgia?  Why do we who have fibromyalgia often feel as if there are more than the 18 classic tender points we see on charts?

Doc:  Fibromyalgia is, as you and as your readers know, a widespread pain condition. The patient often hurts all over so it is not unreasonable to assume that there could be many tender points in many locations.  There is a reason why the American College of Rheumatology committee chose the 18 tender points used as one of the criteria for fibromyalgia.  High power statistics were employed by the committee to determine which tender points are most COMMONLY found in fibromyalgia.  That is not to say that they are the ONLY tender points, but rather if patients have those tender points the likihood of fibromyalgia being the diagnosis is very high. 

Upa: So, if I understand you correctly, your committee must have had talks as to where the most important or prevalent tender points were located and which would be included in the final criteria?

Doc: Of course!  In doing the research for the criteria, many other tender points, other than the classic 18 tender points, were noted to be present in the patients who were the subjects of the original fibromyalgia criteria study.

Upa: Wait a minute, please!  Who were these subjects?

Doc:  Each author was asked to submit information on 10 of his patients as well as info on 10 controls.  The control group consisted of patients who did not have the diagnosis of fibromyalgia, but had other common rheumatological problems, like degenerative arthritis or gout - painful conditions, but not conditions that cause widespread pain.

Upa: Thanks!  Sorry to have interrupted you but you know me and tangents.  So, you were talking about the tender points?

Doc: Yes.  You have to understand that pain is subjective, as is pain tolerance.  Therefore, I don't think you can say definitively that a patient with 18 tender points has worse fibromyalgia than a person with 15 of the classic 18 because they may have many other tender points causing them grief but those tender points were not including in the classic 18.  Furthermore, there is a degree of error when applying the criteria which have a specificity and a sensitvity of somewhere between 80% and 90%.  This is actually very good for biological and medical research but not as good in fields such as physics and chemistry.  To put it simply, the criteria are very reliable, but not perfect. So, the diagnosis of fibromyalgia remains a clinical diagnosis. 

Upa: Despite the new criteria put forth by the 2010 committee?

Doc:  Oh, you know which buttons to push! [Upa says, "Thank goodness there's not a gun in the room!"]  And you also know that's a subject for another day!  

Upa:  Oh all right. I know.  But seriously, I do thank you for your time and expertise.  I hope we can find an opportunity to look at another aspect of fibro at a later date, though not too far into the future! 

*******

So, my dear readers.  I hope you found this interview informative. I did!  

And as always, I hope everyone is doing their best - only better.  Ciao and paka! 

NOTE: remember to submit general questions for possible future posts.  Please understand that they can't be too specific as our source is not your personal doctor, has not examined you and all the other qualifying statements which are understood!  Thanks! 

(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!)

Friday Tidbits: IV Nutritionals and Chelation

The good old James River, full of so many toxic heavy metals.

Do you remember when you were a kid and your parents told you that if you couldn't find something good to say about someone or something, you were to keep your mouth shut? (Hopefully, the parents said it nicer than that, but you know what I mean - or so I hope!) 

It was really good advice, especially when we don't have all the facts and are so tempted, at times, to say something just to say it. (Come on, admit that we're not all perfect angels all the time, no matter how much we try!)  Remember, too, when the media made fun of ME/CFS by calling it the "Yuppie Flu"?  Remember when comedian Al Franken spoke of CFIDS/ME/CFS in a demeaning and derogatory way?  Well, that was back in the 1980s and things haven't changed much, unfortunately.

Recently there's been a bit of hoopla about celebrities getting intravenous vitamin treatments as if they were doing so as a fad or for some trivial purpose.  But how quickly people are to judge!  The benefits of IV vitamin therapy have been known for decades and shouldn't be discussed in a negative manner by reporters who simply want ratings at the expense of people's health and lives.

Here are a few facts that should be considered:

• There are many patients whose illnesses have resulted in their using up their body vitamin stores, leaving them with a vitamin deficit or deficiency.

• Many people do not get adequate nutrition from the foods they eat and, when confronted with an acute injury or illness, need IV vitamins to help them heal.  A popular example of this is when the Emergency Room doctor orders a "banana bag" to be hung as part of the IV treatment for an ER patient. The multi-vitamins infused make the IV bag turn yellow. If you don't believe me, watch some old episodes of the TV show ER.  
• As we age we tend to absorb less and less of the nutrients in the food we eat. This, in addition to the fact that many of our foods are not as nutritious as they used to be, may lead to someone becoming vitamin deficient. 
• Ever heard of "leaky gut syndrome"?  (Of course you have!)  Perhaps we who have CFIDS/fibro are especially prone to becoming vitamin deficient and thus need to get our vitamins directly into the blood stream with an IV, as opposed to the good old fashioned way, by eating nutritious meals.
• What is wrong with getting vitamins intravenously anyway?  The down side is minimal and the upside is enormous.  

I've written before that at one point in my life - back in 1997-98 - I went to a holistic clinic run by a doctor who'd been treating fibro and CFIDS for 50 years, referred to as "Adrenal Exhaustion" back in the day before we became plagued with the ever-so-popular name of "Chronic Fatigue Syndrome" - that's a bit of sarcasm, incidentally, the part about the popular name! (Clarified for novices to this blog!) 

I arrived at the clinic almost at death's door. (How I came about going to this clinic - quite by extraordinary circumstances - is described here.)  It was perhaps the worst period in my life, a life in which I was spiraling downward at an alarming rate, with new, major "things" going awry almost weekly.  Something had to be done if I were to continue living. 

After a few weeks of numerous therapies such rolfing, acupuncture, acupressure, applied kinesiology and other therapies which escape me at the moment, IV nutritionals were introduced once a week and then chelation therapy was later added.  These treatments really made me feel better than I had in 20 years, quite the achievement.  Even my sleep, my severe insomnia, was helped to a great extent.  My local GP was so impressed with my progress that he infamously said, "I don't care if they tell you to wear cow manure on your head.  It's working, so keep it up!"  Quite the statement!  

From one of the best therapists at the clinic, I was told many months into it all that "I never see someone so dead still alive," discussed here in "Perils of Exercise."  He'd spent years in a North Vietnamese POW camp, in a tiny cell where he could not extend his body all the way in order to sit nor lie down (described to me by his sister) so that really "impressed" me! The dude knew what he was talking about!  Now he knew death!

But getting back onto topic....

I must add that one can't go willynilly into the world of IV nutritionals - also known by some as a Myer's Cocktail. Or perhaps I should say it was a version of a Myer's cocktail - in my case - since it was tailored to what my particular deficiencies are/were and cutting back when I had reached the proper levels, not an easy thing to establish due to many factors, too much to go into at this point.

Vitamin levels were taken and revisited, relatively often.  Before chelation (nutritional IV with EDTA added to chelate out the heavy metals) I was tested to see if I did indeed also have heavy metal toxicity.  As an example, I was found to be off the charts in about 10 or more metals, including alumnium, arsenic, lead, mercury, antimony, bismuth, cobalt, copper, iron and so forth. 

I was found to be off the chart in all but one or two heavy metals, but especially completely, and insanely, off the chart in aluminum.  When my local GP saw the results he was shocked. He'd had a patient who had documented aluminum toxicity - from working in an aluminum plant. This man had around 4 stars on the chart. I had 30!  Yes, 30!  Hubs laughs and calls me the "walking toxic waste dump."  Funny chap that husband of mine!  Yes, he thinks he's so very amusing!  Please tell me, someone, why I married the fellow?  

And sorry, but another aside, though important.  As a child I used to visit my childhood BFF and we would swim and fish (and then eat the fish) from the James River, right next to Reynold's Aluminum plant, where we loved to watch the (VERY contaminated) waters coming out of huge drains (a la The Shawshank Redemption type), as seen in the above picture!

To give you a sort of example as to the necessity of having levels checked for vitamins and so forth, my rheumatologist/immunologist/pain specialist gave me a pretty good analogy: if you ask someone for directions to a particular location but the starting point isn't known, you are probably not going to get very far. The same is true for vitamins, supplements, hormones, etc. It's imperative that you know where you are starting from. That is, you should know your baseline level in order to know what dose (if any!) of any particular substance to take.  

It's also important to consult your physician about this!  In just the last few days I've come across two or three people who had bad reactions to magnesium.  But hey!  They didn't get tested to see if their levels were low. If you recall, I even wrote that you must get the RBC magnesium levels checked (here and here), not the way most doctors (who don't understand nutrition) test magnesium levels normally.

This may sound a bit harsh and perhaps too direct and maybe I could spend a bit of time trying to be a bit more diplomatic.  However, I'm feeling cruddy and just don't have too much diplomacy in me tonight.  But more importantly, I want people to understand that I'm not fooling around - and that seems to be achieved by being direct - since I've said often enough that levels should be checked.  As the cell phone company ad goes, "can you hear me now?" 

But getting back to the "making fun of IV vitamins."  People who don't understand how and why the intravenous delivery system of anything, including vitamins, works really should hold their tongues and try not to judge others.  Even if the celebrities are getting IV vitamins as a fad, it doesn't mean that IV vitamins don't have a place in the treatment of sick people.  

Some may say, "but it's so old fashioned to do nutritional IV's."  Well, that's like saying aspirin is old and so it doesn't work, or that putting a cast on a broken leg is old so let's do something else.  Worse, if one's IN PAIN and magnesium is shown to be low - as an example, mind you - you don't put that person on Cymbalta or narcotics. How crazy would that be?  The magnesium wouldn't suddenly get elevated with Cymbalta.  Your brain chemistry is being changed by meds like Cymbalta!  Mind you, pharma would like to convince you that the "pain meds" are better.  And the vitamin world at large is not exactly without faults either. They'd have you taking supplements, etc, out the wazoo and not mention testing levels.  I was shocked, dismayed and "devastated" when I discovered that the humdinger baby daddy of Kourtney Kardashian, Scott, is a spokesperson for GNC. Wow!  How did THAT become a good way to go? 

Finally, I'm not sure many doctors would argue that not establishing deficiencies is the right way to go.  

Those very individuals who insulted extremely ill people by trivializing their problems with the disparaging phrase, "Yuppie Flu," should have learned by their mistakes.  But that would have taken integrity and intelligence, two attributes sorely lacking in our ratings-based reporting.

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



Note: the vitamin info here is pretty well-known and documented but I'll leave a couple of references just for the fun of it. Their bibliographies are a treasure trove of useful references. 

Gaby, A.R. Alternative Med Review (2002) Vol. 7: 389-403 link
Massey, P.B. Alternative Therapy Health Med (2007) Vol.13: 32-34. link

Yes, yes, I realize the references are not MLA handbook approved but then I'm no longer the person who used to do that sort of thing! 

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That's Entertainment!

My middle son (the budding professor) watching a blank screen, waiting for his brother to appear to turn the thing on!  

Last week I happened to be talking to my daughter and was pretty bummed out that there are so few new shows on TV at the moment: it's repeat time as far as TV goes.  However, we are certainly blessed: thanks to cable, the networks have a real run for their money - because the networks are not showing much that is new. I'm reminded of the time when we who lived outside of major cities such as NYC, LA, Chicago had but one or two stations. How times have changed! 

Aforementioned daughter of mine was horrified (deservedly so) when I recently admitted that watching the Kardashians was becoming an obsession. Yes, that is what summer TV leads to. The hard stuff! ;) 

After hearing about the Kardashians serious addiction, my daughter truly appreciated just how boring my life is, being a virtual prisoner in my bed, bath and walk-in closet. Actually, does the closet even count?  I mean, how often do I go out?  I also don't exactly hang out in said closet. In fact, one day when I'm feeling chipper (excuse me while I laugh hysterically!) I will finally get around to organizing it.  Ugh!  I so love to organize and am quite upset with my body and brain because I've not been able to organize and declutter my splendid closet - after we spent a minor fortune on it. You see, just like a disorganized refrigerator, I also have a thing about keeping closets looking splendid!  (I know: others should have such problems!) 

However, recently I was asked by a new follower what do I do with my time?  Aren't I bored to tears (or some such, I'm not quoting verbatim!)?  Many days I don't mind being holed up in my BatCave much. But with the orthostatic intolerance becoming intolerable (Yuck, Yuck, get it?) I'm happy to be in my bed, safe and sound (when I'm not falling out of bed, of course!)  But all too often I can't stand it. I guess most of this is because I'm still not able to read.  Oh boy.  My not being able to read has got to stop and pronto!  

At any rate, I'm finally getting around to mentioning the summer shows that I'm enjoying and hope that you will as well!

Orphan Black BBC America: Now how this show did not get an Emmy nomination, I have no idea - along with most of the critics I've read about.  I'm not really into science fiction, but this is something much more than SciFi.  We have a dead detective (played by Tatiana Maslany), who commits suicide by walking onto the rails in front of a subway train.  And it goes from there. The actress has now played at least seven characters of (spoil alert?) this person.  Yes, Tatiana Maslany plays many parts - each person as different as night and day - and the show's episodes are, seemingly, at least 90% Maslany playing the various characters. What an incredible show!  Once I discovered it (OnDemand) I ended up watching each episode of Season 1 at once. 

Under The Dome (CBS): again, I'm not particularly enamoured with SciFi but this show has enough characterization that it fascinates. 

Devious Maids: so hysterical with its tongue-in-cheek humor.  It's really well-written and acted. Who knew that Susan Lucci could play such a fun and nice character so well? Certainly not I!  

Perception: a drama where a schizophrenic neuropsychiatrist, a university lecturer, has huge demons of his own for various reasons.  In his spare time, he's also excellent at helping the FBI find awful criminals or to figure out very interesting scenerios. This show has heart.  It's well written.  Trust me. I think you'll like it!  I only wish there were more episodes!

Who Do You Think You Are? is back but on cable this time, the Lifetime channel. This is a show I think most of the English-speaking world is somewhat familiar with.  And might I suggest the WDYTYA with Stephen Fry and Graham Norton available on YouTube?

Scandal: I finally got caught up with it. I'd missed the first season but was still able to get into the 2nd season, though with holes so big that a family of deer could have a hard time leaping over quickly and safely.  Sweet hubs got me season 1 for our anniversary and I watched it all through at once. Now I want to see season 2 again - and hope that I can catch all the mistaken theories I had going, twirling around in my head. 

Worth mentioning are: Rizzoli and Isles (from the Tess Gerritsen novels), Suits:about such an incredible mind that the main character can impersonate a Harvard-educated lawyer in a fancy and exclusive law firm whose gimmick is that all the lawyers are Harvard graduates.  

Drop Dead Diva is fun.  The diva, a model, is killed in a car accident but when she is resuscitated she comes back as a plump brainiac lawyer. And she has to work in the same law office as the original model's fiancé. Yikes! 

And Sister Wives, about a polygamist family, absolutely fascinates.

There are also Joan and Melissa (got to be seen to be believed) and Franklin and Bash (another lawyer show) who play totally wacko, but endearing, lawyers. There are so many good shows which will probably last us for a few more weeks, when the summer season will be over.  Oh I know I'm leaving out some gems! 

Finally we have the world of YouTube to while away the hours.  Often I just can't get enough of it.  For example, the interviews I found with Gordon Ramsay are fascinating.  I like to find old music on YouTube, music from my junior high school years and up.  Hubs loves to watch old black-and-white shows which were old even when he was young - shows he watched on TV with his father. 

What did the world do before YouTube?  I'm actually thinking about learning a new language, via YouTube, delusional as that may sound. Yep, I can't manage to cook, clean, declutter, garden and so forth, but somehow I think learning a new language will be the ticket.  Right! <eye roll>

And count your lucky stars that you don't live in this house.  I'll see a show on YouTube and send the link to hubs or to my BFF or my daughter - sometimes even a good one to one of my sons! The other day I actually sent a YouTube link to a new friend on twitter.  Sounds like a nice thing to do, no?  Well, it would be -- if they understood Russian (as in my family's case) or Greek (as in my follower's case)!  

I wish I could provide you a translated transcript from Russian to English of Filipp Kirkorov being punk'd. Absolutely hysterical.  Or Filipp playing Who Wants to be a Millionaire with his (Armenia/Bulgarian) aunt. Hubs enjoyed both shows I foisted upon him because Filipp's facial expressions are out of this world and tell a story with little language translation needed.  And, of course, my (to hubs) hysterical rendition of what was happening and not being able to get the words out of my mouth fast enough because I was laughing so hard was priceless!  OK, this may have been an instance of "you hadda be there!" 

So why do I mention Filipp?  Well, other than for the entertainment value; he always seems to go out of his way in order to make us laugh.  

I urge you to go out there to YouTube and find what interests you. If you love traveling but can't do so because of money or strength/energy (or both!) you can now do great traveling via YouTube. 

And in writing this, I realized that I need to get back to my scanning project - another form of entertainment. If I set the room out right I may be able to handle scanning old pictures while sitting down. Now that would be a huge reward! 

I do hope that these ideas are new and applicable to you.

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


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Sunday and Its Sundries

Bell's: don't even think about settling in!  OMG! Do I always look this cruddy?  At the end of a day when our daughter was yet again taken by ambulance to the "major med center" hours away, all while hubs was getting emergency surgery locally, his first hospital anything ever!  Do I look like I'm in a mood to take anything else on...or worse, to suffer fools gladly? 

When I started "Friday Tidbits," this is the sort of post I had in mind: to just report on this and that, once a week, about the little things that can make our lives a bit easier to navigate.  Or: to catch up with random thoughts that I always manage to come up with. (I can hear that collective sigh - y'all know that, right?)  Or just to vent and shed the occasional tear.

Instead, Friday Tidbits has seemingly turned into simply a deadline I've forced upon myself. But today we'll have a Friday Tidbits in spirit, although it's a Sunday. And BTW: there IS a Friday Tidbits that was written on a Sunday. (Is anyone able to follow that?) Are there any sharpshooters out there who picked up on them when that happened?  Should I give clues? There are a couple of other doozies I managed to sneak in, which I didn't catch until many months later when it seemed right to leave them as they were - as proof of my fibro-brain. If I had any sort of extra strength, I'd turn the hunt for these - shall we say "anomalies" - into a contest with a prize.  Unfortunately, my brain is too fried to go there.  However, if you do find what I'm talking about, please feel free to leave your finding(s) in the comments.  Now what other blogger has scavenger hunts, albeit the CFIDS/CFS/ME and fibromyalgia sort?

On with my random thoughts and "things."

• At the risk of jinxing myself, I think I may have been handed a huge pass. The Bell's Palsy, which I wrote about in Friday's Tidbits, appears to be minimal .  Yes, my face is crooked, swollen on one side, leaking tears (quite the pretty picture I'm drawing here) with drooping eye, sagging cheek and an extra jowly jowl (singular), but that appears to be it for the moment.  Pain is manageable (again, a knock on wood!).  Oh my! If things could just stay this way, not get much worse, and not take an inordinate period of time going away, plus not getting to be too much worse - and not become a permanent thing - I'll be a mighty happy camper. (Wow! That's a lot of conditions! But then I do like my face to be somewhat symmetrical, Diva that I most obviously am! ;))

• Onward!  How I wish I'd had my "ring toe" "buddy taped" when it first got stoved (and possibly broken) three weeks ago. What a difference a piece of tape makes! Considering how much "we" seem to walk into doors and windows (as I gathered from my twitter friends after they read this post) this bit of "trivia" is probably a good tip to keep in mind! 

My final "thing" is a bit lengthy.  Sorry.  But I've been meaning to write about this for quite some time now.  (I don't think I wrote about it but who really knows?)

• I never realized that I was "allergic" to the sort of tape hospitals use.  When I had that nasty central line taken out while still in the ICU (gag! and sorry for THAT visual!) the doctor placed a gauze over the open "wounds" to protect the area where the stitches had come out.  Well, the scars from the tape used to keep that gauze on left a rather nasty bit of scars - and I had the tape on for less than 24 hours!  Even new nurses coming on duty would notice the ugliness there - get a bit grossed out - and insisted on covering the mess with whatever "healing balms" they had on hand. (Thank you, nurses!) Two plus months later, my neck is still scarred (like a promiscuous teenager's!) and recently it hasn't improved much more than what it had in the first couple of weeks. I've tried seemingly everything I have in my arsenal and no luck!  I suppose that adding fuel to the fire, the tape was put on the very sensitive neck/throat area where it doesn't take much to mess things up.

• So, if you have even the slightest sensitive skin, ask the hospital staff to use "paper tape," or "silk tape."  Every hospital has it but since it's a bit more expensive than the regular tape, staff usually won't use it unless requested - or you find yourself with a young doc in the ER who does care how your neck looks for the rest of your life - even when you're an old bag such as me!  In economizing, the hospitals have become "penny wise but dollar foolish."  But don't even get me started on that! Example: two of the almost three weeks I spent in the hospital were freezing, so much so that the staff wore coats and jackets when away from their stations and kept them on until a supervisor of some sort would give them a nasty look which would say, "do you realize how unprofessional you look?"

And finally, may I say how much I'm loving the summer TV shows?  But I suppose that's another post.  At this point I can only say, "Thank goodness for cable" and OnDemand!  Now if I could only figure out how NetFlex works, as well as downloading movies onto my iPad, I'd be an ecstatic camper!

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


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Friday Tidbits: WHAT's With My Face?

An extremely short post today since life hasn't been too "good" this past week.  It was a wicked week with a dental appointment which lasted 4 hours in prepping me for some more dental work to come in about another two or three weeks.  That was the highlight of my week.  The appointment itself was actually easy-peasy since my dentist was as supportive and kind as ever (knock on wood!).  Getting out the door, however, was a different story.  Orthostatic Intolerance and POTS was out the wazoo.  My BP was bottoming out once again with numbers in the 75/50.

The highlight of my week, on the opposite side of the spectrum, is that I was thrown a curve ball.  It appears that I have either shingles or Bell's Palsy of my left eye/face. Yesterday we ran over to our local "Med Express" (or whatever they're called) since we realized it was too late to run over to my GP, not to mention too inconsiderate even if he were still closing up for the day.  The doc checked for corneal abrasions, but after taking into account many factors (all the CFIDS/ME/CFS and fibromyalgia things) - poor guy - he said, "get yourself to the ER STAT."  We did.  But not before I asked him to look at my banged up toe - the one which walked into the door a few weeks ago.  I keep re-injuring it by just walking on it inadvertantly for a step or two. We decided I needed to buddy wrap the toe after all.

At the Emergency Room we found a bit of a story... and I happened to luck out with a really kind and take-his-time-to-listen-and-answer-questions doc. Since there was a woman in another ER room with Bell's Palsy, the ER doc felt that I was in the early stages of most-probably Bell's.  According to the ER doc, Bell's is contagious enough that once it gets into a community, it spreads and he suspects he'll soon be seeing a lot of Bell's Palsy. It was extremely painful: my normal BP of 90/60 was a whopping 155/90 - a definite "tell" of how much pain I was feeling.  Boy did I fall in love with the numbing medicine they put into my eye when they needed to examine it!

I was given a lot of "maybe's."  It might not get any worse than it is already.  It may get much worse.  It might be over soon; it might take weeks or months to get over it.  It may be shingles but it may be Bell's, but he thinks it's Bell's.  It may not be an infection, but it could possibly be an infection.  I got so confused with the many "maybe's" that I've forgotten what it is that I'm supposed to be looking for today!

Finally, this is a field I know nothing about so it looks as if I'm going to have to do a bit of research on the matter.  However, the problem is that I'm exhausted as in my normal "CFIDS exhausted" and exhausted as in "sick" exhausted.

However, the good news in all of this, that is, this week?  It's Greek Festival time!  You have no idea how much I look forward to this time of year.  Those Greek ladies at our church work at warp speed and their love of cooking and baking is loud and clear.  Further great news: it lasts from Wednesday through Sunday, so each day we pick up goodies and feast!  It's the one time of year that I eat cooked spinach, in the form of spanakopita.  Yum.  Moussaka: delish.  The list goes on and on.  During Greek Festival time, I don't even feel guilty about all the weight I put on.  It's the only time I think that eating for two is applicable.  This week the calories don't count - that's my story and I'm sticking to it!

At any rate, if you don't see me hanging around my blog much in the coming weeks, you'll know that I'm trying to fight this newest challenge.  And did I mention that not only is the eye painful, but that it's hard to see - thus read - out of it.

Bell's Palsy...really????  Seriously?

Until next time, I hope that everyone is feeling their very best - only better.  Ciao, paka, and αντίο!  Opa!



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Friday Tidbits: Factors in Developing CFIDS/CFS/ME and Fibro (Part 2)

 Oh how I wanted a horse: but it was not to be...think of all the falls and head injuries I managed to escape! 

Continuing my article from yesterday where I told y'all about a few of my childhood head traumas... I'm in the midst of trying to figure out which contributes more to CFS/fibromyalgia: trauma, genetic predispositions or.... We've discussed head trauma and are on our way through to genetics.

In 1996 my mom and I flew to Russia for a most extraordinary family reunion which I'll write about some day. While we were there visiting one set of very close relatives in the far north, we also wanted to visit another branch of the family, my cousin, in the (far) south.  Well, this particular cousin is my half-cousin if you want to get technical and in this instance, we do want to keep that in mind.  My half cousin is the daughter of my mom's half brother.  In other words, we both share the same grandfather.

Visiting my cousin was an incredible experience.  We planned on being there for two weeks.  She lives off the Black Sea and the Azov Sea, not too awfully far from where the Olympics will be held in Sochi. 
 
Keep in mind that in 1993 we had visited my cousin for one day and night (it was a two-day train ride from Kiev, each way!) not knowing when and if we'd ever see each other again.  In the course of the visit, it came out that I was ill with CFS/fibro. (I did look just a tad peaked when I got to their home.  My mom, in her 70's, looked like a teenager compared to me!)
 
So, when my mom and I visited in 1996, my cousin was determined that I would have a restful time and not do anything but rest, rest and rest some more.  And I did.  My cousin is ten years older than me and though she is one of the kindest people I've ever had the joy to meet, there is no mistaking that she is the matriarch of the family and what she says goes. (Sort of like my mom, me, my daughter....)

I rested, rested and rested.  Other relatives would come by and I was still forced to rest.  I visited with relatives and a few friends but there was an old cot set up for me in their patio-like area and I did most of my visiting from there.  My mom went on a few trips here and there, but I rested, too sick to attend a party thrown in our honor, and so forth.
  
In the course of the first week, I made an incredible discovery.  My cousin, it appeared, has CFS/ME and fibro! This was why my cousin had insisted on my resting so much, pampered me and knew what factors would be stresses.  I also learned some handy tips from her I hadn't known...like never taking a too hot bath or shower, because it is so debilitating. (This was ages ago and I can't believe I hadn't make that observation consciously.)  She monitored the water temperature like some dictatorial, though benevolent, water official!  I was served the freshest food around, despite the fact that oh so many in Russia and Ukraine were starving after the fall of the Soviet Union.
  
My cousin did not have the label of CFS nor fibro because Russia was having its changing into a "democracy" problems where people were dying of starvation - there were over 100 children who died in my cousin's city the winter after my second visit.  My cousin's family was spared because she had two goats (for very rich milk for her grandchildren), chickens and jars of canned goods, food she'd grown in her garden, not to mention the many American dollars we gave her to split amongst the various family members. 
 
As I looked around me at how hard her life was, it saddened me to no end.  This was a time when no medicines were manufactured in Russia.  From home I'd brought as many basic medicines as I could fit into my suitcases.  Even Tylenol was a premium med not available at the time.
 
But I still had a hard time seeing my cousin so ill.  She had no choice but to run a "household," a word that meant taking care of not just the house, but the chickens, goats, garden, all those things that you absolutely have to get out of bed for.  

I discovered that a few times a year she would have what we would call a "flare" and she'd be in bed for a couple of weeks while her daughters would come over to her home and would try to take care of the basics which couldn't be ignored.

She had absolutely no help on the medicine side.  But what I found fascinating is that she had the opportunity to go to a sanatorium for a week or two each year.  This, hard to believe, was not state-funded but private. How, why, I don't know.  But each year her family would chip in and somehow get the money for "mom" to get away for total rest and relaxation.  They all felt that this was the only reason she was doing as well as she did and was, for all practical purposes, still alive.

As the time went by I discovered many things.  I learned that my cousin was very healthy until (OK, this bit will sound like some sort of really bad joke!) a tank part fell on her head where she worked in a factory that put together - well, you guessed it, tanks. You did not want to get her started on the whole "tank" thing, quite aside from the unfortunate "accident" she'd had.  No meds in the former Soviet Union?  "Why?" you may ask. Well, it's because the USSR felt that tanks were more necessary than meds, which could be produced in other, Soviet bloc, countries.  And the number of tanks?  Evidently there were enough for each adult and child in the former USSR and with some left over! She's one feisty woman, that cousin of mine.

I have no doubt that my cousin had excellent medical care, despite all the jokes at the expense of Russia's medical establishment.  I was there when there were a few small medical crises as well as a couple of near-fatal ones in Perm - in the far-away north - as well.  Doctors really cared. They may not have had the basic medicines and testing equipment, but their common sense was honed to a fine art and what we call "alternative" medicine or even "old women's medicine" was used if they thought it would help.  They even made house calls, as I was shocked to see. 
 
The doctors wanted to do a spinal tap on my cousin a couple of years before I ever entered the picture.  I had had two of them with abnormalities appearing in the spinal fluid.  I often wonder what my cousin's spinal fluid would show but I don't blame her for not going that route.
  
So, do I think there is a genetic component to CFS and fibro?  Probably. Given a set of circumstances, there is probably a genetic predisposition.  

Do I think that head and neck trauma can contribute to fibro?  Oh, you betcha.  A resounding "yes."

I also realized that my cousin had a luxury that we don't have.  Aside from the food crisis (which can't be underestimated), there was so little stress in their lives.  For example, they didn't use a washer or dryer and I could see that in adding washers and dryers into our homes, we've used that time and energy saved into taking on more things, obligations, commitments if you will, many of which are stressful.  Think of how stressful life has become with cell phones alone, though I'm sure that the younger generation in my cousin's town all have cell phones by now.  In fact, we've even skyped a few times.

I ate three fresh-food and delicious meals a day with little activity.  We were in the midst of a heatwave, with 112 degrees the entire time I was there - and no AC - though there was no humidity.  And yet I who cannot tolerate anything but 70 degrees anywhere at all, managed to come home 15 pounds lighter, looking a decade younger when hubs picked me up at the airport and feeling the best I'd felt in ages.  It was such a successful visit, health-wise, that hubs often suggests that I go back and visit.  Unfortunately, life gets in the way. 

But, just thinking....and observing how things are.  I think that in addition to trauma and genetic predisposition we really can't rule stress out either. 

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


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