About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, August 16, 2013

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!)

Wednesday, August 14, 2013

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, August 9, 2013

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! 

(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!)

Monday, August 5, 2013

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.

(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!)

Sunday, August 4, 2013

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, August 2, 2013

      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!

      (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!)