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, July 26, 2013

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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Thursday, July 25, 2013

Factors in Developing CFIDS/CFS/ME and Fibro (Part 1)

Plotting how to get through the slates to get into the water: and I did figure it out! 

Whether or not fibromyalgia can be brought about by head trauma is somewhat of a bone of contention, especially since one of the doctors who was on the committee that set up the criteria for fibro back in 1990 has since changed his mind about head trauma and fibro.  Unlike many of his colleagues, among them the very physicians who also served on that two-years-long committee of establishing fibromyalgia criteria, this doctor now claims that fibromyalgia is never caused by head trauma.  But it gets worse...
Incidentally, If you're interesting in what I mean by the criteria, and wonder who is that doctor  - well, he's an academic who sees almost no patients but sits in an ivory tower and makes proclamations. Worse, he practically decides, on his own, what research is going to be funded with the miniscule number of dollars allotted for fibro research.  You can read more on this here ("Fibro is no Accident"), here (Wolfe) and here (Fibro 101) as well as probably in another few posts if you put "head trauma" into the search engine on the right. Furthermore, I can tell you that physicians are, for the most part, afraid of this person because they know that going against this doctor can be dangerous, if not fatal, to their careers.  

An insider secret: the Vancouver concensus meeting in 1994 was far from a group of doctors reaching an agreement or consenus regarding the relationship between trauma and fibromyalgia.  Many bad feelings and rivalries came about as a result of that meeting.  I'd never seen anything like that and I, personally, consider that fibromyalgia research took a huge hit because of this physician who managed to alienate his colleagues and caused, again, in my own opinion, huge setbacks in the field of fibro.  Period.  I'm not alone in thinking this.

But be that as it may, I'm actually going to write about something different.  I just wanted to set the stage, so to speak, about the role of head trauma - and a bit more, of course. You know how I am by now! (I can see you nodding your heads!)

My doctors have always wondered what role head injury has played in my developing fibro and have also wondered if I was genetically predisposed towards fibro.  I've had at the very least 7-9 serious head injuries. Therefore, wondering if head trauma is a significant factor in all of this mess is not a far-fetched question. Here are just a few examples:

  • I fell off the monkey bars at age 4 onto a cement playground hitting the top of my head first. (Ouch!)
  • In 6th grade, the girls were playing some sort of kickball game against the boys. Being very athletic, I was the girls' choice for scoring a lot.  When it was my turn to kick that ball I wanted to do it right and kicked that sucker as hard as I could, missing the ball.  Unfortunately, my leg just kept going and I flipped over 360 degrees and landed on the cement playground and, you guessed it, the top of my head.  
  • My brother once took a long branch and stuck it into the spokes of my front tire as I was riding my bike.  The bike and I flipped, with me, yet again, landing on the top of my head.
  • When I was 12 years old, I decided to dive off a fishing pier. I wanted to show off my newly-learned shallow dive and in order for my friends to see it, I didn't go far down the pier, but stayed rather close to the front by the shore.  Fishermen at the end of the pier made wild gestures and tried to yell things out to me, which I couldn't hear, trying to get me to move. I thought they meant that it would be safer to be closer to the shore.  Well, I dove alright: right into less than 6 inches of water. My head was embedded in the sand, my behind jetted up toward the sky.  My friends all came running to get me out of the water.  Since this was a bay and not a beach, there were no life-guards.  As young as we were, none of us suspected that I should have been only minimally moved because of possible neck injury.  I was unconscious for a bit but no one thought to call anyone because I came to - after all, none of us had ever heard of concussions.  I ended up with one chipped tooth and a very sore neck.  I was extremely lucky, to say the least.  (And of course we didn't tell any of our parents! We didn't want to endanger further trips out to the bay.  We had priorities!)

Are you seeing a pattern here?  And these are just four incidents!  And may I say, is there any doubt as to why I always have on a nice pair of undies?  With me, you never know who will end up seeing them!

Though we (my doctors and I) had established how and why I had CFIDS/CFS/ME and thought we understood how I got the fibro part - as a result of the CFS - we always had to throw into the mix the question, what part did brain injury play in the whole picture, and was there, in fact, a genetic component at work as well?

Ahhh... but this will have to be continued tomorrow since it's become a rather long narrative.  Fear not: we have some fun things coming up.  Clues and teasers: a long-lost relative in the former Soviet Union and CFS/fibro - so I hope you don't forget to join me tomorrow!

In the meanwhile, I hope everyone is doing their very best, only better!  Ciao and paka! 

To be continued...

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Monday, July 22, 2013

Good Summer Reads

The new summer's light entertainment has finally kicked in and I, for one, am thrilled. Add a bit of very light summer reading and I'm pretty good to go.  I've been holed up in bed for a while with almost no mobility and it's been hard to do much of anything since my health seems to change from "I can't take this anymore" to "OK, I can live with this IF I have to," changing moment to moment almost.  But it all boils down to how much I can concentrate.  Let's just say that I'm happy this flare I'm going through (it's been upgraded to full flare status, up from the "mini" of the last few weeks) is happening to me during the summer months when things tend to be light and less stress is around. 

I actually read three books a couple of weeks ago!  Yippee!  The bright side of not having read much in the last three years (or thereabouts) is that practically any new books hubs now brings home from the library are ones I haven't read.  And so I have a real choice as to what I want to read as opposed to, "OK, since there's nothing better...."  You know: sort of like making a decision as to which person to vote for: the lesser of two unlikeable candidates in every election I've participated in since the age of 18.  But, I digress. 

Last month I wrote a post (link) where I listed some of the authors and their books which I thought would do well for those who may have difficulty concentrating on reading. This post was quite popular with good comments on twitter, etc, so I thought I'd let you know what I read a couple of weeks ago which put me in the greatest of moods - all because I was actually reading!  I don't know about you, but I'm always looking for good titles and often I mourn the ending of a book partly because it means I have to find something else as good to read! (More titles can be found on a long ago, but popular, post here.)

I've written before that I think that one of the ways to go if you have trouble concentrating because of the CFIDS/ME/CFS and/or fibromyalgia "brain fog," and have pretty much given up on reading is to go the series route.  It's an easier way to get back into reading when you have known major characters and the dynamics going on around them.  (See this post for more tips to reading if you have CFS/FM.)

So in that spirit I started with a favorite author of mine: Margaret Maron and her Deborah Knott series.  I hadn't read her last two novels, The Buzzard Table and Three-Day Town.  I enjoy Maron's Deborah Knott series but haven't been able to get into her newer series featuring Sigrid Harald - I need to give those a try again when I feel better. (I'm always aware that how I feel about a book or author can all too often depend on my health and how I feel when I'm reading and so I try to factor that into the equation of likes and dislikes.)

Margaret Maron combines her two series into one in her latest two books, most likely in order to bring in her massive Knott fan base in order for us to fall in love with Sigrid as well.  Unfortunately, I think that these last two novels aren't as strong as her previous Deborah Knott incredible successes.  This is not to say that these last two novels aren't still good reading!  It's just that if you're going to start in on this series - which I do recommend! - her last two are not the ones to start with.  There was also a lot of jumping around from different points of view in Three-Day Town which can be a bit annoying, I would imagine, to a lot of readers, but especially the fibro-brained ones who have difficulty shifting gears.  However, Margaret Maron is an incredibly gifted writer: she's quite impressively won Edgar, Agatha, Anthony and Macavity awards.  She is really worth checking out.

I have to laugh. I was so unsure of my so-called brain that I started reading a stand-alone novel by a favorite author and just could not get anywhere with it.  But I kept plugging along, determined that I would beat my fibro-brain.  After a week into it, and only at page 77, I decided that I wasn't going to torment myself anymore.  It was time to pack my bags, so to speak, and return to the dreaded TV.  That's when I happened to pick up Maron's book and realized that it wasn't me at fault in that attempt but the author.  So, remember to be kind to yourself as well.  Don't underestimate yourself.  Just find something that is actually readable and engaging! 

On to my big success: John Grisham's The Racheteer.  I've not read much of Grisham's books in a long time because they had become too predictable and his books have almost acquired a following-a-formula feel about them, with Grisham just churning out a new book each year - partially the fault of the publishing house, I know.  I admit I began reading the book only because it was among the huge haul hubs had dragged home from the library in this awful heatwave we've all been experiencing.  And how happy I am that I did read the book! 

I had forgotten how readable Grisham is.  The content of The Racheteer is first class, the characters as well. I had also forgotten how "simple" his writing is.  I don't mean as in "elementary" but more in the line of Hemingway's deceptively easy flowing prose: very clean writing.  Now don't get me wrong.  I'm not saying that Grisham is as "literature" as Hemingway - not by any stretch of the imagination.  But Grisham's style flows and is easy-going and his plot is captivating.  I was happy as my fibro-brain could follow and I thoroughly enjoyed the book.

As to what is the book about?  Grisham was asked to describe the novel in one sentence and here it is: "A federal judge is murdered, and our hero knows who did it, and why."  I thought I'd borrow a few reviews included on Amazon's site: 
Electrifying...carries the reader along one track (innocent man seeks exoneration) only to switch on to another (cat-and-mouse caper) halfway through this delicious, frictionless ease."   ~Guardian.
[T]his is not a story about a triumph or a miscarriage of courtroom justice. It's the more devious, surprising story of a smart man who gets even smarter once he spends five years honing his skills as a jailhouse lawyer - and then expertly concocts an ingenious revenge scheme... Mr. Grisham writes with rekindled vigor here."   ~New York Times
Wow.  Need I say more?  And note the "rekindled vigor" part of the statement! 

BTW: I seem to have lost my Kindle!  You know how I recently spoke about losing the very few items around my bed?  Well, my Kindle seems to have gone in the "lost sock from the wash" way.  Annoying, though I do have a few library books to pick from.  And good news: one of the rooms in the house which has a massive collection of books has been freed up so I hope to find some books in there which I'd like to reread. (See tips for reading for those with CFS/FM here.)  Amazon really should look into putting a location chip into the Kindle!  I'm going into Kindle withdrawal - words I never imagined, just a few years ago, would ever come out of my mouth!

I've also - thank heavens! - found a few TV favorites.  That will have to be the next post as I need to get back into bed.  (Being mature: how unlike me!)

Any good light reading titles out there, my lovelies?  I'd love to hear about them if so! 

In the meanwhile, as always, I hope everyone's feeling 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, July 19, 2013

Friday Tidbits: A "Mini-Flare"

I'm strongly considering changing the name of my blog since I find myself  "complaining" too much and not giving you enough laughs.  Really and truly, too often I feel that perhaps someone should report me to a blogging review board of some sort in order to turn me in for false advertising - or being guilty of a good old-fashioned "bait and switch."  

Yet be that as it may, I'm gonna do a bit of complainin' today.  However, I don't mean to put people in a cruddy mood.  Oh no, no, no!  Instead I hope that those reading this post will feel "lighter" about things when they hear that they're not alone out there.  You know.  It's the "misery loves company" cliché put to work.  

Last week I wrote about my orthostatic intolerance (OI) and POTS (postural orthostatic tachycardia syndrome, also known as postural tachycardia syndrome).  One reader tweeted me saying that she felt that this was the worst part of her fibromyalgia and I think that really, the OI/POTS mess is, indeed, one of the worst symptoms for me as well. 

This "mini-flare" I'm experiencing with the OI and POTS seems to be cyclical, brought on by stress.  I talked with my rheumy about this and he says that he sees this frequently in his practice. When it strikes, it's a monster. I mean I always have OI going on and have coping strategies, honed over the decades.  I remember that in my early years of being sick - before practically anyone had even heard of CFS/fibro - I used to say that I hate standing in line, to which hubs would joke, "who likes standing in line"?  

It took years to figure out that I didn't actually "hate" standing in line so much as I simply couldn't do it.  It was extremely taxing on my body as my changes in BP show: one set of numbers while lying down, dropping significantly when I sit and then dropping into almost dangerous numbers when standing up.  The heart rate changing significantly as well. Unfortunately, it took "forever" to realize this - after I'd fallen in all the best cities in the States and Europe, as hubs puts it.  Some people bring back souvenirs from their vacations; I bring back yet more stories of falls, including one at this link

I must say, I'm a bit frustrated.  I want to write about all the problems this OI and POTS has caused this week but I'm just too weak to get into it - and really, who cares?  But today when I finally bullied myself to get to the computer -  after all, I promised ages ago that come Friday, you'll "always" find a post here - I encountered a few problems.  It was hard to keep myself from gliding off the chair.  It was difficult to read - even a pitocin shot was finding it hard to coordinate my brain with my eyes.  I'm working through a haze on this post - you poor, poor reader.  Worse, I found it difficult to think straight, my brain is so overwhelmed by indescribable fatigue.  I also find that I'll stare at something, frozen for moments - another classic and annoying problem with CFS/FM.

I thought to grab hubs as he was about to run out the door and ask him to check my BP. It was a "strong" 84/50 while sitting at the computer.  (For newbies: that's not a good number!)  Why bother taking my BP? Because I always find it easier to deal with something when I know that it's not me being lazy.  There is comfort in knowing that I'm simply unable to walk around.  We didn't even bother to take my BP standing: too dangerous.

Back to what causes a body that already has OI and POTS to get ridiculously awful?  I mean I do have coping mechanisms for my regular OI and POTS.  Why this "mini-flare"?  

My rheumy said that no one really knows why but it can most definitely be associated with stress.  He used the term, "when your body is under siege," and said that just overdoing can trigger the OI and POTS.  With me, it happened very badly after getting my driver's license renewed back in April, which eventually contributed to my need of a lengthy hospitalization. This current flare was probably due to the dentist appointment last week. (And I need HOW many more appointments!  Just shoot me now!)

It's a funny thing too.  It can change moment to moment.  I can pop out of bed to retrieve something I need and no problem. Next time I want to retrieve something, as soon as I'm out of bed I lunge for the nearest surface because I'm suddenly drenched in sweat, about to hit the floor, heaving to get my breath, unable to breathe correctly for a pretty lengthy period of time.  

One night this past week I wanted to go downstairs to just get a peak at the decluttering project hubs has going (more on that in another post) and was fine going downstairs. When I turned around to go up the stairs, however, whatever bit of adrenaline I'd mustered up in order to see the "project" ran out and I had to crawl up the stairs.  After 10 minutes - in bed - of grasping for air, sweating like a penguin in Florida (I do think that penguins sweat under the right circumstances, no?) I thought to wake up hubs.  Can I say that the man can sleep through anything, including my melodramatic moments?  I don't remember what my BP was but it was so bad that he wouldn't go back to sleep for about an hour, monitoring me. 

So, this is where I am at the moment.  I'm not sure how much writing I can do while I'm in this "mini-flare." It's a bit much at the moment: trying to get the hypothyroidism under control and coping with what I hope is the last stage of detoxing the Cymbalta.  And really, these are tip-of-the-iceberg symptoms.  Ah, yes: never a dull moment!

And so as always, I hope everyone is doing their very best - only better!  Stay safe - and hydrated - with this monstrous heatwave we're having.  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, July 12, 2013

Friday Tidbits: "Paradoxical" Reactions to Meds

My favorite gal: somewhere between childhood and adulthood on the monument to Alice in Wonderland.

One of the most curious and mysterious medication effects I've encountered is how Ritalin affects the nervous systems of children so much differently than those of adults.  Ritalin is famous (or infamous) as a frequently prescribed medication for ADD/ADHD in children because it tends to have a calming effect on the immature central nervous system.  Yet in adults it has a stimulatory effect, often helping with depression and fatigue.  

What's going on here?  Clearly, the immature brain and the mature brain are affected much differently by the same medication. But when does the switch, from one type of brain to another, occur?  No one really knows, but obviously, it happens.  

Patients with CFIDS/ME/CFS and fibromyalgia often have dysfunction of the central nervous system which causes such problems as difficulty concentrating, memory loss, and/or difficulties in "switching gears" from one task to another.  For example, when interrupted it's incredibly difficult for some of these patients to get back on track and resume the original task at hand. (Understatement, anyone?)

I've often noticed, in myself as well as in others, that medications designed for a particular effect have much different properties in patients with CFIDS/fibro.  Many years ago, sleeping medications actually kept me awake - the opposite of the desired effect. This is what doctors call a "paradoxical effect" of the medication. Why this happens is unclear.  However, I have a few thoughts on this subject.  (And seriously, would you expect less?)

As most of us already know, before the FDA approves a medication for sale to the public at large, it has to review clinical trials performed by the pharmaceutical companies. These often involve two or three thousand people and if a medication is safe and effective, for a particular problem, it gets approval. Once approved, however, it can be prescribed for patients with more than the one problem it was designed to treat.  


Typically, those medications tested by the pharmaceutical companies are given to healthy people who only suffer from one medical problem.  But once it is approved, the medication is often prescribed for patients who are far more complex than the original test subjects.  Furthermore, complicating the issue is that the studies are usually conducted on subjects of European ancestry.  These are just two reasons why new side effects are discovered once the medications are approved and used by tens of thousands of patients.  This may also go a long way in explaining why my mom, an Eastern European, has had incredibly horrid luck - in fact, been disasterously unlucky - with any medication she's taken since she came to the States in 1950.  


We shouldn't be surprised if some medications have undesired - and even the opposite - effect when given to complicated patients.  We with CFIDS and fibro know this from experience and from discussing our problems with fellow sufferers.  I'm not so sure if this is accepted by the medical community at large - though my rheumy/immunologist sees this in his practice every day. 

Have any of you been greeted with skepticism when you reported that a medication either didn't work or had an unreported side effect?  Were you treated as if you were making it up or had some sort of mental problem because you did not have the desired effect which was clearly shown to be obtainable by the studies submitted to the FDA?  But of course you have!  If not, consider yourself extremely lucky!

Bottom line.

This is why meds too often work differently on those with CFIDS/fibro.  Initially, they weren't tested on people like "us."  The anti-depressants, the pain meds, the sedatives - they were all tested on people with one sort of problem only - and we all know that the CFIDS/fibro world is a heck of lot more complicated than the "norm." Don't get upset or surprised if the meds that are seen on TV or which your doctor prescribed don't work the way they are "supposed" to.  Keep trying different meds until you find what works for you! 

Our brains may not be as immature as children's brains but they aren't totally normal either.  A cursory look at the recent studies regarding brain function - fMRI, brain SPECT scan - in CFIDS/fibro attest to that. Unfortunately, no one has yet understood what this means, but then again, as I wrote in another post, our brains in general are the "final frontier" as described by many, including Nobel laureate, Dr. Eric Kandel.


Herein lies the problem I had with Cymbalta - sorry, I know I shouldn't bring up the "C" word again.  But those sorts of meds were made for people with primary depression and it was only a side effect that pain seemed to be more tolerable, thus getting the approval by the FDA for pain and fibromyalgia.  Don't be upset when you see you're not helped by these or any other meds.  Again, tell your doctor what is going on and go with something new until you find that magic bullet - or bullets - that work for YOU, regardless of what medical problems you may have.

As always, I hope everyone is doing their very best - only better.  Safe weekend, y'all!  Ciao and paka!

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Thursday, July 11, 2013

Orthostatic Intolerance and POTS


The other day my orthostatic intolerance and POTS reared its ugly head again - not so unusual - but at a most inconvenient time.  I had a dental appointment for a good cleaning and then another meet with the dentist, to go over the plan of what we'll do over the rest of the time we have left.  As I've written before, my dentist and I have agreed that no work should be done once flu season starts because I always end up getting sick from a visit - and when I get sick, I really do it right!  One year, after a tooth extraction (with an oral surgeon) I caught a bug that lasted two years.  At the end of this awful period I was left with blotchy legs, all purplish and red.  Anyway, there are just too many germs involved with waiting rooms, etc.

I've been going to the same dentist for the past 25 years and he's seen how sick I can get.  I hate that I end up canceling appointments right and left so we've decided that any work I need has to be done between April and September - minus an emergency of course. *Meekly looks up from under her bed covers*  Ugh...I started a bit late this year!  

And I do so love my dentist.  He never lectures me about anything and just says "Do the best you can and don't worry about it," or some such, with a comforting hand on a shoulder.  Whenever I get this "treatment" of kindness and encouragement, I want to cry because kindness always brings me to tears - much more so than any sort of meanness and callousness does. Oh boy. Am I off track or what?

Getting back to the POTS and orthostatic intolerance, two weeks ago I wrote about my abbreviated makeup job in going to the dentist.  I thought that was a hard getting-ready-to-go day.  And mind you...this is a really important thing for later in this post.  Getting out the door is the hardest part of my going anywhere.  Once I've taken a bath and washed my hair, dried my hair, put my clothes on .... Whoops!  A mistake: need to backtrack and undress because I forgot to put on deodorant.  Need for it to dry, to wait and then put on a second deodorant because I perspire just that easily.  Yes, so put clothes back on, see what shoes or boots will fit me that day. I'm entirely too exhausted to do much more to my face than apply some sort of serum, finding it too hard to even think of putting on an SPF, a BB cream or my CC cream.  

And so, as I got out of the tub my body thought it would remind me that it wants/needs to stay in bed and not go anywhere whatsoever, for whatever reason.  Hubs and I thought differently, fools that we are.

I started collapsing, I couldn't sit up in order to breathe, I couldn't breathe because I had no energy to do so. I've only had one major panic attack (that I remember) and it was a doozy, causing me to end up with bronchitis which turned into a pneumonia that was so near-fatal that I got a pneumonia vaccine - a big step in "those" days. This was worse than that panic attack and frankly it scared me. Yes, I'd noticed in fleeting that I was getting awfully light-headed too often in the three or four days before this happened but I didn't need to be anywhere so it wasn't too much of a concern.  There were enough squeaky wheels (symptoms, disorders) to address and the blacking out bit was just a minor inconvenience.  

Hubs, who was getting very upset with what was going on, was trying to be as encouraging as he could be but now I was in the cruddiest of moods.  First I felt "he's in my way, under my feet every time I turn around," yet moments later I was exasperated, thinking, "where the heck is that man?"

"That man" was pumping really cold water into me, gave me OJ, all hoping it would work.  I was collapsed on a chair, bent down and slinking off, which reminded me of my daughter's graduation from university.  I kept sliding off my chair as the new graduates were making their way to the stage, being plucked right back up again by hubs, my mom completely and totally oblivious to everything going on around her but that her beloved granddaughter was about to receive her diploma.  That her daughter was having a side show of her own, slipping and sliding away, she didn't see!  (I hate to think how many people must have thought I'd had too much to drink!)  And once I starting passing out on top of the slip and sliding away, there were medical people around to help carry me out.  But that's another story, as in "Why I didn't see my daughter graduate even though I was there?"

Back to the dentist day.  As I was (so melodramatically) finding it hard to breathe, move, think and other (superficial) activities, I thought to ask hubs to take my BP.

Like many of you out there with CFIDS/CFS/ME and/or fibromyalgia know, our BP can be very low for all too many reasons.  I usually concentrate on the top number without giving much thought to the bottom one but I was now concentrating on the bottom.   It was 80/50 sitting down.  When I said that I wanted to have my BP taken standing up, he tried to put his foot down and said it was just too dangerous at that moment to do anything but sit there for a while and let the liquids do their job and to get a bit to eat to stabilize my BP.  He was right. (Moan! Groan!) 

It was a tricky little period.  The getting-ready-to-get-out-the door is always the hardest part for me.  Once outside, my adrenaline can kick in and I can go into emergency mode, but there is always a huge price to be paid in the end.  And it doesn't seem to matter if I've been out for 8 hours or 2 hours.  Weird!

When the dentist said that the next phase of fixing my teeth would take a bit of work he was concerned. Finally, he magnanimously proposed that we split that job into two days, two appointments for 90 minutes each.  Goofy me said, "fine!"  I always think it's fine UNTIL I have to do it and I realize that I am indeed a sick person.  Why is it that I have such a hard time getting around that little "fact"?

Hubs spoke up and explained that after my one and a half hour appointment, I'll be so ill that I won't be able to come back another day anytime soon.  After much discussion, we decided that it would be a better tactic to go just the once for three hours vs. the two appointments for 90 minutes each.

What would have been your decision?  And do you find that getting out the door is the hardest part of anything you do?

Anyway, 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!)

Monday, July 8, 2013

Dermalogica Overnight Clearing Gel

I have no idea what is going on with my face.  I've never been prone to breaking out so when it happens I freely admit that my first reaction is panic.  I almost always have on hand some sort of preparation that is a dedicated product for getting rid of those suckers, which are supposed to work on the occasional "zit" but almost always find that the newest product isn't very helpful.  I tell myself that I'll stop buying these sorts of products and stop wasting my money.  After all, many of the less expensive products on the market often make my sensitive, funky CFIDS/ME/CFS and fibromyalgia skin worse so some of the higher priced products are almost an investment.  Well, I'm happy to report that on this front, thankfully, I didn't stop after all - searching for that holy grail, that is.  

Understand, I'm not talking about bumpy skin - which, because of non-forgiving HDTV, I see all the time now. In the past few years I've started getting a bit of that going on with my forehead and I do think it's because of stress.  When our daughter was so ill and basically called the major medical center in which she was hospitalized her "home away from home," by the end of a year I was surprised to see that hubs was getting the same bumpy action going on as well and he's a mighty hearty fellow - knock on wood and tphoo! tphoo! tphoo! I suspect that this bumpiness was due to the stress as well as the bad diets we found ourselves surrounded with.  I mean, how much take-out food can a person eat without some negative skin reactions?

No, what I'm talking about is plain old unadulterated zits.  When I was hospitalized back in April/May, it was about two weeks before I had a chance to glance into a mirror and was absolutely mortified when I saw a huge "growth" on the very tip of my nose.  Nothing would get rid of it.  I felt as if I should tell anyone who came into contact with me that yes, they can just talk to the monstrosity on my nose.  After all, it was more obvious, even, than the nose on my face. (Get it?  Huh?  Huh?  Get it?)

When I came home the first thing I did was scrounge around in my medicine cabinet and I found the product I had used successfully once before and I just hoped that it would work its magic this time around as well.  Did I happen to mention that by the time I got home, the thing on my nose had increased in size by a lot and that it was starting to get a purple color to it?  I mean it was really gross and I couldn't help getting visions of Chaucer's "The Canterbury Tales" and some of the creepy descriptions. (Eew! Gag!)

After giving my face a proper washing I applied my little miracle product.  And it worked!  The next morning it was as if nothing had been there, and this despite almost three weeks of tormenting me.

So, what was the great product?  I know.  You are all brilliant and the picture above is a dead giveaway.  Yes, it was, in fact, Dermalogica's "Overnight Clearing Gel."  This is truly magic, my lovelies.

Last week I came down with a few "blemishes."  I suspect it's from all the sweating I'm experiencing since it's close to the hairline now and I use a little hand fan when I break out into a very long and annoying "hot flash." Even my scalp needs fanning. The first night this happened I applied the clearing gel again and my face was "blemish free" by the next day.  A couple of days of little sweating and no breakouts.  But today I had a whole lot of sweating going on and I gave myself a good treatment of cleansing, gentle exfoliation and then the gel on the not-so-hot areas.  I'm hopeful that I'll have the same results each time this happens to me.  

Yes, I am still sweating from what I think is the Cymbalta withdrawal but it is, thankfully, happening less frequently - though still too often.

And what are the ingredients of this little miracle gel and what does it do?  From the Dermalogical website:

  • Salicylic Acid sloughs off pore-clogging skin cells to inhibit development of future breakouts,
  • Natually-anticeptic Tea Tree Oil soothes while you sleep. 
  • Helps inhibit breakout-causing bacteria with Meadowsweet (Spiraea Ulmaria) for cleaner, healthier skin
  • Niacinamide and Biotin, combined with Zinc Gluconate, Yeast Extract, Caffeine and Licorice help sooth away irritation.

The results are that (again, according to the Dermalogica website) the Clearing Gel:

  • Removes impaction plugs from the follicle to relieve congestion and breakout activity
  • Helps regulate oil production
  • Helps calm irritation brought on by breakouts.

I believe it. I'm going to keep at it for a while, without stopping it for at least a couple of weeks until I know that my skin is settled down.  

A warning to those who have insomnia: caffeine is in the product.  I don't think it's a problem with me but this could be a concern for some.

BTW: In writing this piece, I discovered that drugstore.com has the clearing gel at 20% off at the moment.
I think I'm going to have to give myself a good old, luxurious DIY-spa day very soon, complete with some sort of mask that draws the toxins out.  I may have something exciting coming up by the beginning of next year (depending on how my health holds up) and I want to get myself looking good (feeling good would be a great bonus!) all the way around (including my newly-added weight!) so I'm making all sorts of "resolutions" at the moment.  I've cut back on the Neurontin and, of course, the Cymbalta is supposedly gone, and I see that suddenly I'm not eating hubs and me out of house and home. With a knock on wood and another tphoo! tphoo! tphoo!  (Boy: it's exhausting being so superstitious!)

Hope that this little tidbit helps those who are fellow zit folks. Isn't it grand to know you're not alone?

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, July 5, 2013

Friday Tidbits: Walking Into Doors?

It's a good thing that I started this post the other day because I forgot that today is Friday and there was simply no energy for "Friday Tidbits" last night.  I worked on this earlier but I'm not sure I've reworked it enough to hit "publish."  But since I'm not inspired into writing anything any better... well, you'll see!  (Eek!)

Each three-day weekend brings the same thing: I have such wonderful visions of getting things done.  OK, I realize this July 4th wasn't exactly a three-day weekend, what with Friday being a work day, but close enough. I always envision wonderful developments of putting the house closer to what it should look like - you know, less of the "Green Acres" look, in the midst of remodeling, etc., going on.

And in many ways it's not an unattainable goal.  The latest development, after all, is that I'm no longer falling out of bed, something that had become such an annoyance and just a bit of a dangerous phase that I went through in the past year - just a tad "inconvenient," you know.  It had become such a regular "thing" that I wasn't surprised any longer when I found myself on the floor at the foot of the bed, or on the bathroom floor. However, now that the falling nonsense is out of the way, I find myself walking into walls, or, more specifically, walking into door frames, misjudging how wide open the door actually is.   

OK.  That sounds crazy but when we redid "my" bathroom (going as "handicap-friendly" and as "handicap-accessible" as possible) we thought a pocket door would work so very nicely.  Somehow, a pocket door seemed a bit easier to navigate than a regular door.  (I know: how silly!) 

What I hadn't counted on is one of the (many) contraditory natures of our CFIDS/CFS/ME and fibromyaglia. On the one hand we have such a lack of muscle memory and on the other hand we really depend on it. 

Indeed, I'd given up on muscle memory. I simply didn't realize how dependent we still are on some part of the brain, the one that's  considered to house "muscle memory."  It accounts for many things - like walking?

But it's when you come to more complicated matters that you realize that your muscle memory is impaired. You put down the TV clicker and when you need it a minute later, you can't find it.  You put your cell phone aside and then can't find that darned thing.  The other day, after hubs and I searched for my cell phone entirely too long, I said, after getting monstrously discouraged, "those were words I never imagined using when I was growing  up: saying 'where is the darn phone?'" There are only about seven items on or next to my bed - literally - and I am constantly hunting for them, including two pairs of glasses, one for reading and one for distance (don't ask!).  They almost never leave the room because *I* so rarely leave my room.   

And so bearing the constant hunts for everything, I had no idea how much muscle memory was involved in navigating my living area, the bed and bath.  Everything is off.  For example, I can no longer tell if I'm waking up in the morning or in the evening.  The way the sun comes through the windows from the bathroom into my room is completely off.  The outside noises coming through the windows I now hear are off.  The walking distances are off.  And that means that the pocket door is usually only 3/4 open and I misjudge and walk into the door frame.  Misjudging everything has become a pain in the patookie.  

Some days it's just too much, this hunt for everything, the navigating.  After much hollering the other day (to myself: I was, after all, alone in the house) I realized that most people do not spend half of their "awake time" looking for things.  Nor do they spend the other half of their time annoyed with the fact that they'd just spent all that time hunting for lost items because they weren't put away in the right place.  I used to say to the kids - as well as to hubs - "if I were blind, I wouldn't have this problem because you'd all agree that we needed a place for everything and everything in its place."  Can we say, "deaf ears?"  Lately, I've given up on that battle.

Which leads me into saying that one of the reasons I look forward to three-day weekends is because I keep hoping that I'll be able to get a massive amount of work done in the house - because hubs will be here for me to hand him the list that he can start doing and crossing off the "honey do" list.  (See that list up top?  I actually gave him one that long once and he still has it - as a "souvenir"!)

A few days ago, I misjudged the narrow door entrance (the now "infamous" pocket door) and went Whack! into the door frame, bruising and then scraping my shoulder in the process.  A couple of nights ago I walked into the same door frame and hit it so hard that it may have cracked one of the bones in my "ring" toe, leaving a very painful and completely swollen toe.  (How can such a small toe hurt soo much and incapacitate you?)

Where is my brain?  Where is that muscle memory that judges your steps and that calculator in your (so-called) brain - the one which keeps you from walking into doors and walls, from automatically reaching for things which should be in a certain spot but aren't because your brain was too "fibro'd" with other matters to register what you're doing?

So because of a dumb toe there's another "holiday" when I won't get a bunch of things done that I'd hoped to. It sort of reminds me of "for want of a nail, a kingdom was lost." 

But I tell myself that though the 4th was spent in a bit of pain and I wasn't able to get anything off that "honey do" list, the weekend still remains.  This may be (probably is!) convoluted thinking but if I look at the 4th as the day that would have been the Saturday of a normal weekend, then I'm still a day ahead!  

Hey!  I'm just trying to make lemonade out of lemons!  My optimistic self says that perhaps we'll have been able to indeed do a huge bit of decluttering, putting things away into newly-designated spots.  This will indeed be the magic weekend we can get things done.  And who knows, perhaps I'll be able to find the couple of pairs of flip flops that have gotten lost in the moves from one room to another and which I desperately need now that my toe is swollen into a mushroom-like growth.  (Yuck!  That sounds really gross!)

Besides, emailing my BFF and talking to her on the phone was worth it all today.  In true BFF fashion, it turns out that she messed up her ankle yesterday - thus showing what parallel lives we lead. 

So until next time, stay safe, everyone.  I hope everyone's feeling their very best - only better.  Ciao and paka! 

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Monday, July 1, 2013

Should Opioids Be Considered "Bad"?

Yes, terriers are cute too! 

I've been thinking.  Yes, I do realize that that's a risky proposition and I very well know that no one in my family ever wants to go inside my head, but that's my nature.  It's a hobby, you might say - convenient for a person who spends most of her life in bed.

But I just can't let things go when I don't get a satisfactory answer or explanation.  And I can't seem to let go of the opioid question.  At the moment, I feel much like a terrier which gets something between it's "cute" little teeth and sinks in.  However, if you take into consideration my withdrawal from Cymbalta (going on now for how many weeks?) all my "thinking" may be understandable.  Each time I break out in a sweat or my heart starts pounding and racing - along with a few dozen other "minor goodies" - I have to go back to why it is that the medical community is suddenly so reluctant to prescribe everything but opioids. 

Yes, in the past I've written a few posts regarding the question of the "politically correct medical thinking" that's pervading our society. I've written about the advantages of using opioids (narcotics) for the treatment of chronic painful conditions.  And while my posts concerned patients with CFIDS/ME/CFS and fibromyalgia there are, indeed, other chronic painful conditions that deserve to be mentioned and for which opioids may be ideal.  This is not to say that I'm a huge endorser of opioids.  I just think that we really need to keep our options open and know what it is that we're rejecting before we do so.

Osteoarthritis, for example, afflicts millions of Americans and in many cases patients have limited therapeutic options.  To put a human face on this condition, consider the type of case I discussed with my rheumy last week.  When I asked him if he could give me a good example of someone who would benefit from an opioid over other sorts of medicines or medical interventions, he was able to immediately give me an obvious scenario.

Take the problem of a 76-year old overweight, diabetic, hypertensive woman with a weak heart who happened to have severe osteoarthritis of her knees.  Remember, this is a type of "wear and tear" arthritis that frequently accompanies injuries to the joints, or old age.  In a perfect world, this patient would get knee replacements and be able to function more normally.  

However, she's not a surgical candidate because of the aforementioned hypertension, diabetes and cardiac problems.  My rheumy stressed the fact that she should not take anti-inflammatory medications such as ibuprofen, naproxen or the like because her age puts her into a high-risk group of patients who would likely develop bleeding stomach ulcers or severe gastritis from those medications.  Another option without "resorting" to opioids would be injections of medicines directly into the knee joints.  This could give some relief but it would only be temporary.  The best medication for this patient, given the circumstances, would be a long-acting opioid preparation.

The above scenerio occurs quite commonly according to my rheumy, but many patients fear getting "hooked" on opioids while many doctors fear scrutiny for prescribing opioid medication. I was assured that if a patient with no history of drug abuse takes an opioid for pain then the risk of addiction is extremely small.  And if a doctor keeps good records and documents clearly in the medical charts why opioids are the best option at a particular time he/she should not be intimidated into withholding medications that are likely to safely enhance the quality of life for many patients.  

I've personally witnessed individuals, including some family members, who have suffered needlessly because opioid medications were either not offered or were not administered in sufficient doses to effectively get the pain under control.  I must emphasize that I don't expect doctors to take away all of a patient's pain.  But I insist that they alleviate the pain to the point where patients can regain some quality of life.  


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: see the directions on the right hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so it's a firm promise!)