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.

Wednesday, January 30, 2013

Sleep: A Cabin in the Woods

Sleep is, simply said, the bane of my existence, as so many of you who have read my blog have heard ad nauseum.  It affects me because of my fibromyalgia as well as my CFIDS/ME/CFS.  Every move I make during the day is constantly calibrated by my brain as to how it will affect my ability to fall asleep that day/night, or not.  Furthermore, everything I put into my mouth is calculated for its impact on my sleep.

There's a technique I use that I came up with over the years which gives me at least a fighting chance of falling asleep.  Many would call it "visualization" but I don't think of it as such (been there, done that, doesn't work FOR ME, others differ, as I always point out!).  It goes a few steps beyond visualization.  And before anyone beats me to the punch, for some strange reason, I do NOT get obsessive thoughts at night when trying to fall asleep.   For some reason my brain CAN and DOES shut everything down when I go into "hopeful sleep mode."  Rather, it's the darn limbic part of my brain that has a faulty on/off switch that's responsible for the severe insomnia I live with.

Yes, I do take sleep meds at night, and cycle them in order to keep them as effective as possible.  However, if I know that there's no way that I'll fall sleep, I don't even bother to take the meds.  My feeling is why poison my body with chemicals that won't work on a particular day, no matter what?

I've gone the allopathic route and along the holistic route with just about every treatment that's out there: 38 years is a heck of a long time!  I've undergone extensive work with applied kinesiology to acupressure, from Rolfing to nutritional IV's, from chelation to all sorts of diets, from aromatherapy to various types of massages, and this is just the tip of the proverbial iceberg.  Most of what's happened is that I've only proven to those who have worked on me extensively is that my sleep is in a class of its own and that I'm a tough nut to crack - if it's even possible to do so.  

However, there's a technique that I came up with on my own which does help if I'm on the verge of falling asleep, but it depends upon whether that on/off switch in the limbic part of my brain is just faulty on a particular night, not completely broken.  In other words, this technique helps if the on/off switch can be jiggled a bit.

After turning off all of the lights, in as comfy and relaxed a state as possible, I picture a cabin way up ahead of me in a snow setting (with eyes closed, mind you!) and then I begin to walk towards it in my mind.  I allow no thoughts to enter my brain while slowly approaching the cabin.  I begin to count slowly in my mind, "one, two, three..."  No outward thoughts are allowed.  I can't stop and think, "perhaps I can make this pillow more comfy," nor think about my ice-cold feet suddenly wanting to warm up because then all bets are off.  My SELF wakes up if I move at all.  And there is a penalty for any stray thought that might enter my mind: I must start over again, from one.  I keep walking toward that cabin and counting my steps as I go.  Rarely do I get past three before I fall asleep.  However, I need to start over numerous times!   Many times.  Frequently!  It's truly hard to concentrate on nothing at all, to make your mind as blank as possible and your body and brain as relaxed as possible.

Once I stumbled onto this technique, I soon recognized the circumstances under which this "hypnotic" move would actually have a chance of winning.  Now, often, if the moon aligns just so with earth and a few other planets, the magic happens:

...talk about blissful sleep!  

And so, I hope this technique may end up in your arsenal of insomnia-fighting techniques.  I do have a few more tricks up my sleeve for future postings.  However, if this one works, I know you'll be feeling your best, only so much better.  Ciao and paka!  

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Monday, January 28, 2013

Masks: Fighting Dehydrated Skin & Pores

The weather here has been horrendous because of the cold temperatures and that's not good news for skin, especially CFIDS/ME/CFS and/or fibro nor hypothyroidism skin.  Once we factor in the "windchill" factor it's been hard for even normal, healthy people to function.  I'm in bed (yay!) resting up as much as possible, sleeping off and on a lot, hoping like mad that my body finally realizes that I'm trying to work WITH it and not against it.  So far the body's not getting the message, but I keep trying, and keep on truckin', as we would say waaaay back when.

With this freezing weather, the central air heating is working steadily and my skin is getting more dehydrated each day.  I've been too exhausted and in too much pain to keep up washing my face properly and to take advantage of these in-bed days by doing all sorts of "girlie" things. However, yesterday I couldn't take it any longer and decided it was time to try to get back to taking care of my skin.

Ahhh.  And there's been another complication to add to the entire aging fiasco:  my face has been extremely dehydrated from all the high fevers I've been running.

Last night I took a bath that was entirely too warm for this time of year.  It was an oh so wonderful feeling, though the hot temperature is "bad" because the skin gets too dry and dehydrated and then is compounded by my NOT putting any moisturizer on my body because usually I can't stand anything on it. I did "do" my face since, hey, as I always say, the face is sacred!  I thought I'd try one of the paper or cloth-like masks, which are filled with product and you put on your face for a certain amount of time.  Since pores are something I'm always battling against, I thought I'd give the Masqueology Pore Minimizer I'd purchased this past summer a try.  (Why do I keep saving these things for a special day?  Half the time I wouldn't recognize a special day if... well, I just wouldn't and all those things I save go way past expiration dates or out of style...  but I know, back to topic at hand!)

I love these sorts of masks in general.  They are loaded with product and so easy to apply in bed.  Better yet, you use it and then discard.  (Hallelujah!  I have enough clutter in my life!)  After my face was clean, I laid back in bed for 20 minutes and let the mask work its magic.  This was easy to do because I was absolutely exhausted and drained from the entire bath experience and in shell shock as to how much of my hair keeps falling out.  OK... Sigh, I know: again, back to topic at hand!

At first I thought the solution was a tiny bit on the sticky side and wasn't sure I'd like that.  There was a bit of excess of the product after the mask was in place and I used it on my extremely dehydrated arms, elbows, shoulders and even my 30 inch arm/hand scar.  Within a couple of minutes those areas - which are so hard for me to keep hydrated - were no longer sticky, but extremely soft and well on their way to being hydrated.  I couldn't wait to see what would happen to my face after 20 minutes.

Simply the idea of these "cloth" masks thrills me because there's so little muss and fuss. They're extremely popular in Asia and since the Asian market is so far ahead of us in quite a few beauty areas - the BB and CC creams are great examples that come to mind - I thought I'd give them a second try.  

Furthermore, I love how this mask came to be.  According to sources I read, "Masqueology worked with top Korean dermatologists to develop a rayon-cellulose fabric that best delivers product into the skin and paired with a patented pro-vitamin D3 gel that fights UV photo-damage."  The first time I used another "cloth" mask is explained just a little bit here with an embarrassing picture of moi. I've learned from my mistakes and won't be doing a repeat of that again for the world to see.  I also thought I'd done a proper review but evidently not.  Will do so in the future.  Sorry!  That's what you get with fibro-brain!

But back to the mask at hand: the "cloth" is extremely thick so in that sense it's easy to work with - it's not about to tear as you adjust it to your face.  It's quite cold (it felt absolutely wonderful for someone who's been running fevers and getting clammy constantly) and the product consistency feels quite a bit like the gelatinous aloe vera - that is, slimy.  This, it turns out, is to our advantage because it helps the mask adhere to the face so much better, stay where you put it and not dry up after 20 minutes.  In fact, after I removed the mask I bunched it up, squeezed what product was left into my hand and then spread it again on my elbows, arms, decolletage and shoulders: heaven!!!  And so very soothing!  The slimy feel lasts only a moment or so.  It's not much of a factor in my book.

But back to the beginning: I ended up even covering my eyes with my mask and all but the nostrils of my nose. To cover the eyes, mouth and nose areas is optional, though breathing was most certainly not optional!  (Right? Right!)  While waiting for the twenty minutes to pass, I talked to hubs who had been watching TV but found my face with the mask ever so much more entertaining.  Poor hubs: he's under the mistaken impression that I'm the only female out there who does this sort of stuff to her face and when assured otherwise, he's then so pathetically happy that he was born a male.  

Anyway, while he gawked, I thought about what I'd read on the Masqueology web site and here's what the key ingredients are and what they do, taken right from the Masqueology web site, words and all.  In other words, their PR people probably went a little overboard as PR people generally do.  However, they weren't too awfully far from the truth!

• Minimizes the visible appearance of pores [so-so]
• Refines skin’s overall texture and appearance [agreed!]

Key Ingredients:
Comes in a 3-pack.
Sodium Hyaluronate [incredible, all of it!]:
Helps skin absorb more water effectively
Reduces any sort of trans-epidermal water loss 
Small molecular size makes it especially penetrative
Holds 1000 times its weight in water
Panthenol [fantastic!]:
Improves hydration
Reduces itching and inflammation
Accelerates and improves healing of epidermal wounds
• Mushroom Extract [great!]:
Reduces inflammation and irritation
Impacts the appearance of lines and collagen production
Helps brighten, fade sunspots and acne scars
Prevents cell breakdown and exfoliates the skin
• Ceramide 3 [yep!]:
Repairs damage to the skin’s moisture barrier
Smooth away wrinkles and crows feet
Repairs skin tone"

Perhaps what is best is what Masqueology does NOT contain:
-Synthetic Dyes

In the past I've tried quite a few products with Hyaluronic Acid, and while they helped somewhat, they were not enough to really combat the severely dehydrated skin associated with fibro, CFIDS (etc) AND hypothyroidism.  In fact, I thought that it was simply my skin and that I couldn't expect better since we do have such funky skin.  However, I was so wonderfully mistaken with this cloth mask and its abundance of product.  This product worked like a charm.  I'll need to retry my other products with Hyaluronic Acid because at this point I like the Methodology best, even better than the Clarin HydraQuench Cream, the Clarin HyraQuench Cream-Mask and Clinique HydraQuench Bi-phase Serum.  And though it kills me to say it, I think I like it better than even the Sisley Express Flower Gel.  I want to say, "say it isn't so, Joe!"  So another testing of said products needs to be done!  (Especially since they're sitting in the cabinets lonely and waiting for me to start using them again!)

Furthermore, I liked the anti-inflammatory ingredients, which worked well with the itchiness on my arms. I'd used that excess product well for a problem I just spoke about in Friday's Tidbits last week.  (Darn!  Wish I'd thought to put some of that product along my back!  Next time?)

At $8 a pop, this mask is pricey but if you compare it to a facial by a professional, then it's a huge bargain.  I liked this much better than the few professional facials I've had in the past, so....

And finally, if you're going out for the evening, I can see spending a little bit of extra time and using this mask before putting on makeup, etc.  It just gives a nice finish to the skin.  It'd also be great to take on a trip or vacation since the packette is so thin, non-bulky and there'd be nothing to drag home! 

Altogether, I'm so glad I bought the three-pack and look forwards to using it again soon. Masqueology is available at Amazon, Sephora and Dermstore dot com.

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

Friday, January 25, 2013

Friday Tidbits: Three Medical Quirks

Experiencing motion sickness but already suffering migraines...

It's Friday Tidbits time, the day of the week when I can make a few points without needing transitions between topics.  OK: I know that this differs very little from my usual way of writing, but I do like just a few teeny-tiny delusions in my life.  We'll pretend that I always have beautiful transitions.  Fine: end of ramble and on with the subjects at hand.  

I have three medical quirks you might not have noticed before which I found fascinating.  These I bring to you from what I've learned from my rheumy/immunologist over the years.  I'm not sure what we can actually DO with them, but hey!  That's our lives (those with CFIDS/ME/CFS and/or fibromyalgia) on any day with anything, so why start making too much sense now?

And so, on with: Did you know that...

  • You can get reptilian/lizard-like skin from fever and swelling?   Ha!  This is a good observation and tidbit, no?  (Yes!) When I got the cellulitis in my hands and left foot, my hands swelled up enormously, with extremely tight skin and tremendous hotness and redness to them.  After the high dosage of antibiotics finally kicked in, the swelling, redness and hotness started to come down, but my hands had a very strange texture to them.  I kept looking at my hands and thinking, "what the heck is going on here?"  (You DO realize that you're getting the cleaned up version of what actually went through said mind?)  My hands didn't look chapped, they didn't get a rash and they weren't dehydrated either.  They just looked sort of scaly, almost reptilian or lizard-like.  (This "reptilian/lizard-like" description is uniquely mine, I believe, not found in medical journals, though there is no doubt about the phenomenon.)
I discovered that a good description of what happened is "local inflammation that creates a glove of dead skin."  The top layer of skin dies and then flakes off.  When the top layer of your skin is no longer alive, but hasn't yet flaked off, it gets rough.  Oh my, "rough"?   Well, that's just putting it mildly.  But, now, a few weeks later, my hands have a wonderfully soft texture!  Think about it: I underwent a natural exfoliation process!  It's not the IDEAL way of going about doing one, but the end result WAS gorgeous. (I'm TRYING to be positive here, y'all!)

  • That itchiness can be associated with a viral illness such as the flu?  No one knows why this happens.  It's called "pruritis," which is just a fancy word for "itching."  There's a spectrum to pruritis as there's a spectrum in almost everything.  Some cases are simply due to dry skin but others have more serious causes.  It's not an allergy.  It's just a non-specific reaction that may be due to a toxin or a virus, but again, no one is exactly sure why this happens.  (Oh, we can talk unmyelinated C-fibers, nociceptors, histamines and all sorts of medical theories till we're blue in the face but it all boils down to "No one really knows, folks!" and  besides, they are not the point.)   
The itching can be as benign as seen with dry skin or even pregnancy.  However, it can also be a sign of serious illnesses and/or conditions.  These include liver disease/liver failure, kidney failure or when other organs malfunction, such as the thyroid gland.  I have this symptom a lot and am happy to finally have an explanation for it since I always knew it wasn't simply due to dry skin nor imaginary.  (Remember: I have hypothyroidism but there's more than just one candidate for what causes this with my body.)   Furthermore, this is an itchiness that is definitely "invisible": it's not a rash or hives, just itchiness so bad that you want to get out of your skin.  So, next time you or I are in a hospital and complain of itchiness that's driving us nuts and the nurse gives us a disbelieving fish eye, we can be prepared!  I can tell you that when I've had this invisible itchiness, rashes and hives all at the same time, it was the invisible itchiness that was the worst - by far. 

  • Children destined to become migraine sufferers have a warning of what is to come later in life by suffering motion sickness accompanied by vomiting.   I can vouch for that!  I'd give my camp counselors a desperate look and was immediately excused to get out of church QUICK: all it took was barfing a couple of times as a 5 year old and I was set for 13 summers!  This is the fate of the migraineur: he/she is sensitive to stimuli, be it to light, sounds and smells, a "state of being" for one who is extremely sensitive to these stimuli, even when without a "headache."  This certainly explains a lot of my childhood, though I had migraines even as a very young child.  (I know: I'm so wonderfully lucky, aren't I?  Excuse me as I keel over!)

And so there you have it.  A few little tidbits to mull over in your mind - or not, as you wish, though I'd rather hope something here is of use.  In any event, I wish all of you a wonderful weekend, with you feeling your very best, only better.  Ciao and paka! 

Tuesday, January 22, 2013

4 Fibromyalgia & CFIDS/CFS/ME Tips

Try to spend time with those you really love!

Today I bring you four commonsense CFIDS/ME/CFS and fibromyalgia tips some of which are actually helpful for all people, not just sick ones.  

This comes to you by way of my rheumy.  

  • Blame your doctor: I love this because it's one of the best things you can do for yourself when you feel as if it's all too much.  That's why you're paying your doctors: to get help of all sorts, from physical to mental and spiritual, I dare say.  And if your doctor is worth his salt, so to speak, he WILL have told you these tips. Furthermore, you simply tell yourself that you not only have permission to do the following, but you have been ORDERED to do the following:
  • Don't overdo it when you feel great/good.  Let's face it.  Most of those ill with the DD were over-achievers in their previous life and so it goes against every part of our being NOT to do all we can on a "good" day.  It makes us feel great when we accomplish anything.  We're "doing-it-all junkies" is another way to put it.  We also feel guilty when we don't accomplish those things which we think are on the top of our endless lists. So, keep in mind that on a good day, don't overdo it.  And yes, I realize that I'm very bad in this department.  
  • Don't starve yourself when trying to lose weight; nutrition is so important.  I think my rheumy gets most upset about this one because his patients are overwhelmingly women.  And what do women always try to do?  Lose weight.  This is especially true because we are often on medications which make us gain weight, be it because we're always so hungry or because the medicine messes up our metabolism.  But he sees women doing great harm to themselves because of the weight issue.  So, try to take off weight carefully and in a smart fashion.  Once the vitamins and nutrients in your body are depleted, all sort of problems enter the picture.  Furthermore, those deficiencies often take years to truly recover from.  B-12 deficiency, for example, takes two years for full recovery.  The numbers on tests may become normal relatively quickly, but that doesn't reflect what is happening to the actual cells.  Here is where you need to be patient.
  • Avoid toxic people.  We have enough problems in our lives and we have enough conflict about our illness even being real to begin with.  Do we really want to add toxic people to the equation?  Your time and energy are already limited.  Do you really want to waste precious health credits you've accumulated on people who poison you with their attitudes and passive/aggressive ways?  You know who they are.  Cutting them out of our lives will lessen the stress load.  Now I don't think you should say, "get the heck away from me you windbag, you blowhard."  Simply be conveniently too busy with things that really need to get done and spend your precious time with the people who bring you up instead of bringing you down.  
So, there you go.  Right from my rheumy's (and GP's) mouth.  Very obvious truths, but oh so hard to live them, I know. 

With that I say, I hope everyone's doing their very best, only better.  Ciao and paka! 

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Sunday, January 20, 2013

Sleep Matters

I must say that these last couple of weeks have been the strangest I've had in quite some time. Anyone who's even a rare visitor to this blog can't help but realize that I have serious sleep issues.  For example, we're talking about regularly not sleeping for days and nights on end. After a couple of days of unrelenting "awakedness," my family walks around saying, "mom's due for a 'marathon' sleep!" - as everyone holds fingers crossed.

The "marathon sleeps" are wonderful, absolute bliss, almost heaven.  They can last up to 24 hours and one year I had a most unusual one.  Exhausted from all the holiday goings-on, I fell asleep on Christmas Day and slept right through to New Year's Eve.  I only woke up occasionally to mozy on off to the bathroom, gulp down a glass or two of water and literally pass right out again - in bed, of course.  Yep.  This was quite unusual. Typically, a marathon sleep is at least 12 hours, I would guess, and can go on up to 24+ hours.  However, the problem is that the marathon sleeps never ever come close to making up for the time I've lost due to the insomnia. So, that's the setup.

I've been battling the flu, on and off, for at least six months, perhaps longer.  Yep.  My funky immune system just can't seem to get its act together and no matter how much prodding I do, insulting, or even encouraging, my immune system simply doesn't seem to want to listen to me. And, to be fair, I don't want to listen to IT.  I suppose you could say that we're "frenemies." I have reason to be mad at it, although I must point out that I most certainly have NO idea why it doesn't want to be friends with me.  But that's neither here nor there.  

Sleep = a better, stronger immune system.  One of the reasons that those of us with the dreaded CFIDS/ME/CFS and/or fibromyalgia have such a rough time of it ("rough," really? no stronger word can't be found?) is because insomnia rules.  If you don't sleep, your immune system doesn't function optimally.  Of course, there are a lot of other factors contributing to the whole immune system issue, but restful sleep is really key and perhaps prime.  That is, quality counts!

So, what is it that has made this such a "weird" last few weeks? 

My body has decided to attack me from a new direction.  Suddenly, I'm falling asleep right and left.  Then, beginning with last Thursday night or so, I started having an incredibly weird sleep pattern.  I was working at my PC and kept waking up, surprised, because I'd find my head on the keyboard, NUMEROUS times!  At one point I woke up with my head on said keyboard, glanced at the time and discovered that two hours had passed.  I'd be working on my iPad in bed and wake up with a start because the iPad had fallen onto the floor and the noise then woke me up.  Hubs has had a hard time hearing the TV the last few days as we were supposedly watching some of our favorite shows together, because I was, EVIDENTLY, snoring away loudly. (Evidently?  Yes, I swear, sometimes I think he makes this stuff up, just to get my goat!)  

What the heck has been happening to me?  If I'm not careful, I may very well end up having to relinquish the title which so many sleep specialists have bestowed upon me: that of one of the WORST insomniacs they've ever had the misfortune to come across.  Were I searching for titles, "one of the worst insomniacs ever" is not the one I would choose.

But I digress.

It seems that my body and brain have decided "enough is enough."  Body and brain seem to be disgusted that I can't seem to get down the concept of LOTS and LOTS of rest.  I keep postponing rest until a "good" time comes along - my gallbladder and the hypothyroidism pretty good examples.  And so they seem to be trying new battle plans to get the message through to me - that once I feel a little better, I need to continue to rest. Actually, it's much like the warning you get when a doctor puts you on a course of antibiotics: do not stop taking the antibiotic once you feel better but take the entire course.  I tend to take on a small project as soon as I feel better, absolutely convinced that I'll suddenly be healthy and wake up only to discover that the last 38 years have been a bad nightmare, having been lived in some parallel universe and that my health is, indeed, fine and dandy.  

At any rate, my body's newest attempt to combat all the assaults of the past year (not to mention all the assaults of the last few decades) is that it's finally making me sleep.  I'm not sure how long this will last - we all know that in mentioning it here, I've really and truly jinxed myself - but I am so enjoying all this overwhelming sleep at the moment, even if I AM more disoriented than usual, time and day-wise.

BTW: did you know that you can get all itchy from a virus?  I've been going through a bout of itchiness like I've never had before and the med I take to prevent hives/itchiness has not been able to stop the itches.  I may soon go mad!  On the other hand, what validation: to know that this is not "imagined," but is a real scientific fact.  I'll take whatever validation the medical community reluctantly doles out!

The most frustrating part of this flu at the moment is that I feel great-ish one day - or even one hour - only to feel myself suddenly sicker than even before, running a high fever, sweating, unrelenting pain.  The sweating persists even as the fever goes away, my body temperature returning to my normal 95.5-ish.  But that, the sweating that is, is a subject for another day.

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 anything.  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!) 

Friday, January 18, 2013

Friday Tidbits: Depressed/Not Depressed?

Yesterday in an email to my BFF I admitted that I thought I was depressed.  That's a huge admission for me since I put a lot of work into NOT being depressed.  

However, looking over some of the posts I've written lately, along with some research on the state of the flu "epidemic" we're experiencing, I suddenly realized that I wasn't depressed as much as I was just really sick. What I thought was just some sort of awful bug we've all been fighting, has most likely been the flu instead, the real McCoy.  In fact, it's probably been more than just one episode of the flu.

Well, it was the flu on top of the cellulitis, which would make sense, because who knows which came first, the cellulitis or the flu?  Regardless, whatever got into my system resulted because of an already weakened state, and that's on top of the already weakened state of the CFIDS/CFS/ME and fibro, plus my severe insomnia that's gone into stratospheric heights.  Am I making sense?  I know, you really do need a score card around here.

What started my "depression" is that I couldn't take the cellulitis (wow! that did a lot of damage!) on top of the hypothyroidism I was trying to get a handle on.  In the flu epidemic post I wrote last Friday (link) I alluded to the fact that we would basically have to put a halt to "The Hunt for Red October" until flu season was over. This is the plan I've dubbed as the hunt and mystery of the new-awful-mysterious-thing-that's-happened-to-me-that-we-need-to-find, but instead get red herrings thrown at us.  (Whew. Do you see why I need a code?) In other words, my plan to go on the offensive had been thwarted and it was just too much for the Pollyanna side of me.  (Hey! You think it's EASY to be positive???)

BUT!  Yes!  BUT!  And it's a good BUT

Yesterday's news gave me heart.  According to what I can piece together from various news sources it appears that:

  • there is a good chance that the flu season has peaked in a few states.  Whew. That sounded wonderful.  Caution is being reported right and left, as it should be.  Furthermore, we still need to watch what we touch, where we go, all the things I mentioned in the flu post.  But this is wonderful news, the best I've heard in quite a while.
  • there is a good chance that we only have six weeks of this junk ahead of us, which takes us to the end of February.  I liken this bit of news to labor.  What was so awful about labor?  It was that you didn't know when in the world that baby of yours would finally decide to enter the world and put you out of your misery.  Having what is a type of time frame is NOT to be underestimated!   I can handle six more weeks of vigilance and wait to resume "The Hunt for Red October."
  • there have been three strains of the flu out there, not one.  NOW I understand that I may have had all three versions at one point or another.  Looking at the symptoms was reassuring.  I hadn't been fighting the same thing over and over again.  And no wonder the pain meds weren't working.  Once I have an explanation I can handle most things.  I'm just so glad that I take a daily anti-viral which my rheumy/immunologist recommended and GP prescribed and I've been a fanatic about taking the anti-viral for about the last five or so years.  How much worse could things have been?  MUCH, from what I've been told by said doctors.
    As soon as my surgeon gives me the OK to return to whatever MY normal is, I can't wait to start sterilizing the house.  I have got to find the steamer and start in on washing those areas I'm exposed to, including the kitchen areas where germs and viruses may be lurking despite all attempts (on hubby's part) to eradicate.

    Furthermore - and how I hope I'm not jinxing myself! - I've made another list for the weekend and hubs looks like he's gung-ho.  I certainly hope that nothing happens to HIM between now and then to make this plan go kaput.  I mean, I REALLY need to get something done in the house.  Accomplishing anything will put me in a better state of mind.

    So, I see that I'm not depressed as much as sad and frustrated.  Or at least that's my story and I'm sticking to it!

    And in the meanwhile, I hope everyone is feeling THEIR best, only better, and staying away from all those nasties out there.  Take care and take precautions.  Ciao and paka!

    Six weeks?  Yeehaw!!!

    (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, January 16, 2013

    My Bodycare Supplement Routine

    OK, I know it'll never happen in THIS lifetime! But one can dream?

    It was back in August that I swore that I'd write a post about a vitamin/supplement routine I'd been on for what seemed like "forever." And yet I've hesitated to write about it. Why?

    I suppose my hesitation to endorse this line is because I hate sounding as if I've bought into yet another doctor's line of supplements. I've taken enough of them over the years and have very mixed feelings about the whole issue of doctors selling or endorsing products. I know, call me old-fashioned, but I do remember when doctors couldn't even advertise. Yep, that's the way I like my doctors: unadvertised and without commercial. Furthermore, I HAVE tried various doctor's lines of vitamins and supplements and they've never done me a bit of good, other than to throw away good money.

    But about a year ago, I started taking Murad's "Firm and Tone Dietary Supplement" daily packettes.  I'd seen them advertised and turned my back on them until I got to the point where I thought, "I really DO need to start back on a good vitamin and supplement regime."  (Yes, I've started talking to myself: it's a genetic thing!)  

    I've done vitamins and supplements over the years in a major way, sorting them into those pill boxes, carefully investigating everyone's opinion, reading all I can get my hands on as to what is good or helpful, especially for the person with CFIDS/ME/CFS and/or fibromyalgia.  At different stages of my life, I've taken up to 50 pills/capsules a day, not including my prescription meds.  I've fine-tuned according to my needs, with supplements such as CoQ10, milk thistle, enzymes and the list goes on and on.  At times I felt as if I were spending my life keeping up with filling those little Sunday-Saturday, 4 times a day compartments pallettes, in plural.  I always felt better, but it was a royal pain in the behind, not to mention awfully time-consuming and expensive.

    Somehow I conveniently fell out of the vitamin and supplement habit but after the near-fatal and also long-term damage of the "compartment syndrome surgeries" episode of a year ago, I knew I had to fight back in a major way.  After all, I'd had fluid around all my major organs (abasarka), had renal failure, had come close to pancreatitis (jury is still out on that) and the brown stuff in my urine bag in the hospital was the tissue breaking down and leaving my body (rhabdomyolysis).  It took two blood transfusions to save my life.  

    When I finally arrived home, I knew that I needed to start taking care of my body in a serious way.  The plastic surgeon, a gentle, jolly bear of a man, found nothing amusing at all with my situation and since he was a surgeon, had no way of comprehending all the stuff that was going on with me aside from the surgeries he'd performed to save my arm/hand and life.  He flatly told me that he could never understand all the mysterious goings-on with the CFIDS/ME/CFS and fibromyalgia and all THOSE issues.  He just knew that I'd had a close call and could see that somehow I wasn't getting the message that my health and what had transpired was no laughing matter.  Bummer.  I really like to make people laugh, but he was in no laughing mood when he'd see me.  When I joked that he must see this stuff - the acute compartment syndrome, etc. - every day, he looked at me seriously and said, "No, thank God, I do NOT see this sort of thing often.  And you don't have an easy road ahead of you."  Gulp.  Killjoy!

    So, I thought I'd slowly go back to taking vitamins and supplements.  I knew I wasn't up for the charts I'd made for all the complex plans I had before of not over-dosing on too much of one thing and not enough of another. Therefore, when I started seeing the Murad line of supplements being touted, I thought, "here we go again. SUCKER!"

    Imagine my surprise, when I discovered that they were actually making a difference!  My legs were getting a bit veiny (understatement) since there was so little muscle to hold those veins in place.  My skin tone, which had been problematic only in the upper arm area, was now an issue all over.  It was extremely difficult for me to breathe after all the stress on my heart and lungs. I was bloated but my skin was dehydrated.  As if I hadn't had enough issues, I now had so many more.

    I felt like a fool.  I cringe saying that I even tried the program.  If anything, the descriptions all over the box are as silly, blatant and worthy of the best headlines that New York Daily News (famous for its cheesy headlines) could come up with.  It was better than anything that the Kellogg and Battle Creek people from the beginning of the 20th century could come up with when they tried to get Americans to start eating healthy. (We've been a country of unhealthy eaters for much longer than we think!)

    After a week or so of taking the Murad supplements, I thought that surely the positive results I was seeing were a figment of my imagination.  It had to be ME being a sucker.  How in the world could my skin actually start firming up in just a few weeks with no exercise to go hand in hand?  How could I be eating less and my appetite be under better control within just a few weeks?  Even the Murad people weren't claiming that I'd want to eat less.

    And just as I was telling myself I was a Madison Avenue ad executive's dream come true, I happened upon Caroline Hirons' blog and after reading some of her posts I found that she too was puzzled about the sudden fullness of appetite she was experiencing.  Now, Caroline Hirons is one of those women who has a bunch of credentials as well as street cred when it comes to the beauty world and especially the skincare world.  She's completely irreverent (which I love) but so spot on.  Her blog is one I have on the sidebar as a blog I follow - or at least try to - because anytime I remember to check her blog out, I come away with tons of knowledge or validation I strongly need.

    So, when I saw that Caroline Hirons was endorsing Murad, I thought, well, I suppose I'll buy another supply of those boxes of packettes and give it another month's try.

    What do they include?

    • A multi-vitamin (absolutely essential but I always forget!)
    • Connective support complex supplements (now we're talking business!)
    • Essential Fatty Acids (which help skin cells attract water)
    • Cell Energizers (be still my heart -well, not TOO still!)

    Why do I love them?

    First, I've made it pretty clear that I'm awful about taking any of my meds in a timely fashion.  I either can't find them (and they're laid out in a dish next to my bed as of 6PM each evening!) or I can't find the little Sunday through Saturday pill box (in yellow so it doesn't blend in with the bed linens) that hold my ONE thyroid pill for the AM.  If I need to go on an antibiotic four times a day, all bets are off.  I can't do ANYTHING every day - other than eat - much less a few times a day, so we're not doing well in the thyroid department. I'm an all or nothing person: either my life is nothing but taking supplements and meds all day and nothing else gets done, or my life is reading/watching TV and no meds or supplements get taken.  I know.  It's time to get over it, but I'm a very OLD dog!  New tricks are hard to learn, and if it hasn't happened in the last four decades, I'll venture to say it'll never happen.

    With the Murad "Firm and Tone" ... Ok, I have to stop. Can ANYONE out there say that with a straight face?  I mean, really?  Why not just tell us we can take supplements and our faces will look like Elizabeth Taylor's reincarnated at the height of her beauty?

    So, getting back on track (and yes, it took me five minutes to stop laughing enough in order to continue)...

    The packettes are divided into four "compartments," two of which you take in the AM and two you take in the PM.  Well, that's never going to happen in my lifetime!  (That's what all the ABOVE stuff was about: to make you understand how hopeless a case I am!)  

    The first month I ended up with a bunch of PM's and finally decided that I'll just take both AM and PM supplements in the late afternoon.  I know, you should probably take some before eating, some with a meal, some after a meal.  However, I finally decided that my life is too short to get that straight.  Like I said, it's never going to happen.  So which is best?  No supplements ever or all at some point?   Yes, I think you see my point.  All in one go it is.

    The only precautions I do make?  I don't take the supplements around my thyroid AM med taking - whenever that might happen to be because of my sleeping "issues."  I understand that there may be a calcium issue (if it IS indeed an issue: I've yet to talk to my endocrinologist about timing of food, etc.).  I also don't take the supplements close to "bedtime" because one of the PM meds I take is Neurontin.  Neurontin and magnesium cancel each other out.  Other than that, I'm just glad I can take something with a minimum of effort and a minimum of worry.

    So, yes, I've been back on the Murad for the last two weeks and they are as great as I remember them.  I'm probably on my fourth or fifth box of them now.  I've gone off of the Murad for periods and then back on - it's one of those "out of sight, out of mind things" with me, as well as "am I imagining this?" and yes, I can definitely see a huge change in my skin tone. 

    Just a few of the improvements I've seen thus far, as of my January 1 resolution in terms of weight and all that "nonsense":

    • my skin's elasticity has improved (big time!)
    •  my sore throat, lymph node problem and mouth sores seem to have improved
    •  my posture has unexpectedly improved
    •  my muscles have strengthened

      That's it so far, and this from a person who never really notices things unless they are drastic and you'd have to be a moron not to notice.  Honestly, I'm truly impossible.

      However, yesterday I got off the sofa by my bed without touching the arms of the sofa, just my legs lifting my body up, the way things used to be in the "old days."  It was purely instinctual, not at all premeditated.  And please keep in mind that just a month ago, hubs was having to push me towards the middle of the bed each night, with me howling at him to get his filthy paws off of me - OK, I slightly exaggerate about the "paws" thing.  However, for some odd reason (?), hubs didn't want me falling out of bed yet again.  But I didn't like the manhandling and I was just too weak to be moved from the edge of the bed.

      So if for no other reason than marital bliss, I highly recommend this supplement routine. Forget the Madison Avenue bull.  Just consider taking the supplements and see if they work for you!

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

      Sunday, January 13, 2013

      My Concealer Favorites

      And here we are, bored by the ins and outs of CFIDS/ME/CFS and fibromyalgia and our funky skin.  Well, fear not, I've been busy trying to find the concealers that I like most for "our skin." "We" all too often have skin problems due to hypersensitive and dehydrated skin and HOW we hate those wrinkles, be they cute or elegant, depending on the look you think they give you. In fact, I think there are very few American women who think that they have good skin.  Yes, we American women have a problem with anything and everything when it comes to the "looks" category, no matter how badly or wonderfully we look to the rest of the world.

      Well, today I thought I'd take on a few of my favorite concealers which I've found to be a huge help, especially at this time of year when the cold weather combines with the dry conditions in our homes or at work.  Add to this dryness factor the rapid yoyo'ing of winter's temperatures and we end up feeling pretty darn awful about ourselves.  Then you throw in the insomnia and you had better have pretty good concealers if you plan to go out of doors where people will see you.  Really, we DO owe it our fellow citizens to allow concealers to protect some of us from huge pores, hyperpigmentaion, wrinkles that'll soon reach and connect with our neck. Oh the problems which take over our faces are not only humdingers, but almost too numerous to count.  But I thought, present three concealers: that's quite doable.  Plus, the three I'm discussing come in two different forms, so that should add a bit of spice to our lives. One last thing to keep in mind, make sure you put some sort of eye cream around your eyes!  After a certain age, not having used a eye moisturizer can become a real problem. (And reviews on several eye creams are coming up!)

      So let the games begin!
      • Lancome EFFACERNES Waterproof Protective Undereye Concealer.  I've literally been using this since my senior year in HS or freshman year in university and I couldn't stand not having it in my arsenal.  The back of the tube (which lasts forever) says you can use this under or over foundation when wishing to camouflage under eyes to a matte finish. (I use it around my nostrils as well.)  Fantastic product.  I think I'd rather be impaled than lose this gem of a product.  And ALWAYS remember to put eye cream on around your eyes, very gently (very thin skin there, so use your non-dominant ring finger to pat it into place).
      • bareMinerals multi-tasking minerals with the SP 20 sunscreen is a powder I love. It's the concealer I've mentioning which DOES require a brush for application. (Yay!)  Unfortunately, the only problem is that as you get older, you need to be careful that the under eye area doesn't look too wrinkled/crepey because you can get a cakey look for your troubles. I've also heard it said by various makeup artist that these powder foundations are really good one to use if you plan to have pictures taken.  The the powder form of the SPF in the mineral doesn't go nutso, making lights bounce all over the place and thus make your face look glowing - as in really shiny - and your head doesn't look almost-alien like.  Having worn this off and on for the last 4 or more years, I have to say that I agree! 
      • Estee Lauder Double Wear Stay-in-Place Flawless Wear Concealer with SPF10 . Perfect. Nothing else needs to be said. I carry this in my little bag of essentials each time I go out, but most especially when I have a hair appointment and know that there'll be little makeup left on my face by the time everything's over.  Furthermore, concealer is a must after the eyelashes are done.

      Concealers can be applied with a brush or with your fingers. I've always used the finger technique but have started loving the brushes so much that I've decided to join the 21st century and its love of makeup brushes. Who says an old dog can't learn new tricks?

      And that's it!  Here's to everyone not just looking great but feeling their best, only better!  Ciao and Paka!

      Friday, January 11, 2013

      Friday Tidbits: Staying Safe from the Flu

      Visions of people around the country wanting to be admitted to hospitals have haunted our newscasts in the last few days as "the flu" spreads at a maddening pace. There is footage of doctors, as well as patients, wearing face masks in ER's and the worst footage is perhaps MASH-type tents being set up outside at least one hospital I saw on TV. The flu season is in full swing on steroids, even though calendar-wise, flu season is just really beginning.  Those viruses out there have swept the country in unanticipated numbers, catching everyone off guard, it appears.  People who don't normally get flu shots, though they make sure that their children and elderly parents do, are running to get those flu shots now, hoping for the best.

      What is the CFIDS/ME/CFS patient to do?  Most of us have compromised immune systems. I know I do.  Often it feels as if all anyone in my family needs to do is look at me crossed-eyed and I'll come down with everything but the Bubonic Plague, and there are days when I wouldn't be at all surprised if that happened to me as well, especially with my glowing record of health lately. (Yes, the cellulitis IS getting better but I can tell that this cruddy thing has wiped me out.)

      I, personally, can't afford to get the flu shot.  I've had it more than once (idiot that I am, I'm always game, thinking surely I over-reacted last time!) with disastrous results.  So, what's a person with a compromised immune system to do short of living in a plastic bubble - often something I almost fear I'm getting perilously close to doing myself? (Joke?)

      Here are some tips which I follow.  Some are a bit (?) unorthodox.  Some are obvious.  All will keep you as healthy as you can be, if you're able to "live" with them.  I happen to be of a "most" severely ill CFIDS/ME/CFS patient, so you yourself need to decide how far you have to go to get through the flu season as safely as possible.

      1. Don't make appointments for anything but the most vital of doctor visits. I was supposed to see my endocrinologist the other day and he canceled with an emergency. I think that may have been a blessing in disguise.  Despite all the problems I'm now experiencing, I'm not sure I need to add flu to them, so when we reschedule, it'll probably be for mid-March or April 1st, our usual time, when all danger of my catching most bugs is past. (April 1st: don't you just love my sense of humor?  But it's the usual day my new doctor appointments normally begin!)
      2. Don't go to the dentist until flu season is over!  My own dentist has more or less kept me to that "pact," not allowing me to schedule teeth cleaning, dental work that seems necessary but really can wait, despite my "I just can't take it anymore" attitude at weak moments.  He's seen and heard what happens to me during flu season (heck, even non-flu season is a risk) and won't allow me to be scheduled.  (Have I mentioned that I love the guy?)
      3. This is NOT the time to be going to movies, and I say this despite my love of the Oscars and, that as I type this, The Film Critics Awards are on.  Talk about a breeding ground for germs and everything else under the sun!  I thought about trying a matinee but realized how really stupid that would be in my case.  So, nix the movies until this flu has been gotten under control, at the very least.
      4. IF you have to go to see your doctor for anything that's earth-shattering, you may want to consider my very strange, but effective, strategy.  I've had enough of waiting rooms and getting ill.  So, hubs goes and sits in my place and I sit in the car with my Kindle and we wait separately.  When it's my turn he comes out to get me from the car, I come in through the back entrance, bypassing the dreaded waiting room and though I haven't had the nerve to Lycol my way in, it may come to that.  I'm still coming down with too many health problems after seeing my GP or any doctor for that matter.
      5. Wear gloves if possible, in order to stay safe from door handles, and other places that lurk without you suspecting them.  Stop the shopping!  Do you realize how many people have touched those items in the store before you?
      6. Do NOT allow your friends or family to use your cell phone. There's no need to get that close to anyone's phone any longer.
      7. If need be, start a fashion trend of your own and wear a face mask if you're going to the mall, etc. (Not that you should be, but it's your health at stake.)  I've looked at footage of the Japanese in the past and thought, why in the world don't we wear face masks on the street, in malls, etc.?  I think this might be the year to start this movement here in the States.  (I know, I know.  It's never going to happen but a girl can dream!)
      8. Do not shake hands with people and do not give real hugs to people!  My GP almost fell over when I wouldn't shake his hand when the swine flu was a real threat.  Then I found out he'd had a few cases and *I* almost fell over.  I wanted to escape as quickly as I could haul myself out of there!
      9. Washing your hand with soap and water is best, I think, but since that's not always possible, carry hand sanitizer with you if you want/need to go out. The normal ones out there are fine but if you can't tolerate them, Jurlique makes a wonderful moisturizing one, for a more "natural" and gentler formula and for softer hands.  It's available at Beauty.com or Sephora.  Any other sanitizers are available from the drugstore.com website, so there's no need to stop at the CVS or wherever you get those sorts of products.  And I always love to read the customer reviews.  Shipping is free with a $25 minimum order.
      10. Try to get everyone around you to cough into their elbows. I admit this would be great for me to master, but old dog that I am, I've not been able to master this new trick.  It's a good thing I don't go out!  (Or maybe it's precisely BECAUSE I don't go out that I've not formed this "new" habit.)
      11. And finally, when you get home, walk to the nearest sink and wash your hands immediately.  Then strip down and get on clean (germ and virus-free) clothes as fast as you can.
      12. Try cracking your windows at home open a tiny bit to let in the fresh air and sweep out the stale, germ and virus-laden air which can't help getting in the house from those who live with you.
      A final thought: keep in mind what the rules are for a new-born baby visit in the hospital if you're not sure what procedures need to be observed.  Washing hands before seeing a new-born, check.  Covering your clothes before touching a new-born, check.  You get the picture!  Keep that in mind and you'll hopefully survive intact.

      And here's hoping that everyone stays safe.  No, I won't be one of those getting the flu shot, but I have good reason not to.  Do you have questions?  CALL your doctor and see if you can get information from him/her as to whether you need to be seen or not.  Consider calling an ER before going over, if you think you need to be seen.  Often things just need to run their course and going to an ER can lead you to unneeded exposure to bugs you'd be best staying away from!  Again, talk to health professionals - especially those doctors who know you best - so that they can lead you in the right direction.

      Here's hoping that all are doing their best, only better.  Stay safe everyone.  Ciao and paka!

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      Wednesday, January 9, 2013

      Restless Leg Syndrome vs. Myoclonus

      There are two symptoms of fibromyalgia which are quite common: Restless Leg Syndrome (RLS) and myoclonus.  These two symptoms of fibromyalgia are extremely easy to confuse; in fact, many patients (as well as doctors) are confused by the two terms and use them interchangeably.  However, there is a huge distinction. 

      But first: the commonality of the two phenomena: they both interfere with sleep. Yippee!  Just what we fibro's need, right?  (Not!)

      Now to the differences:

      Restless Leg Syndrome is basically defined as a "disorder in which there is an urge or need to move the legs to stop unpleasant sensations."  It's usually felt in the lower legs, between the knee and the ankle, which makes you feel as if your legs are moving but when you look down, there is no movement there.  It feels quite uncomfortable, indeed so unpleasant, that it feels as if it'll drive you mad.  It often feels as if the legs have bugs or worms underneath the skin and so the legs feel as if they are trying to get rid of them.

      Furthermore, the following are characteristic of RLS, as defined by several sources as:
      • usually occurring at night when you lie down, or sometimes during the day when you sit for long periods of time
      • may be described as creeping, crawling, aching, pulling, searing, tingling, bubbling, or crawling 
      • frequently occurring in the upper leg, feet, or arms. 
      Usually, you'll want to move around and even walk and this really helps to relieve the awful sensations.  As mentioned above, they usually occur during sleep hours, which the NIH calls "periodic limb movement disorder" (PLMD) and that they annoyingly disturb sleep, that Holy Grail we fibro's crave (of course!).

      The symptoms tend to worsen when you're flying or traveling by car, in class or at a meeting.  In other words, at those times when you're basically still.   All symptoms are believed to worsen during stress and emotional "upset." (Huh! What isn't?)  And yet the NIH site says "no one knows what causes RLS."  Talk about talking out of both sides of their mouths!  
      Watch that psychological/psychiatric wastebasket voodooism!  There's supposedly a genetic component to RLS. (Yeah, yeah, blame the parents if you don't know what causes it? Haha!)

      RLS is often treated by Requip (ropinirole) and Mirapex (pramipexole).  Low dose narcotics are also used effectively in many cases.  (For more on RLS, the NIH site is here.)

      Myonclonus, perhaps the "cousin" of Restless Leg Syndrome for our purposes, is defined as "a neurological condition characterized by sudden, abrupt, brief, INVOLUNTARY, jerk-like contractions of a muscle or muscle group."  In other words, the body DOES move, involuntarily, in the case of myonclonus.   

      Mine, for example, is so bad that the entire body used to jerk up into the air, off the bed, plank-like, 4 feet up, and then boom, down.  It used to wake hubs up when I hit the bed like a cannon-ball.  Other times, my head is involved, as well as one shoulder or the other, jerking from being overtired, with a Tourette Syndrome-like look about it.  When I was at the "major medical center" with my sick daughter and had done too much work or gone too long without medication, the myoclonus would come roaring back and we knew it was time for another family member to relieve me for at least 12 hours of rest.

      Myonclonus is often treated with Klonopin (clonazepam), though doctors are under a lot of pressure (from the insurance companies, peer pressure, the medical board, etc.) to avoid using benzodiazepines like Klonopin because it is a controlled substance in the valium family. 

      However, there is a caveat that should be included here. The FDA has approved Requip for use in RLS.  On the other hand, the FDA has not approved Klonopin for treating myclonus.  Why should you care?

      You should be concerned because the insurance companies have a huge say in your care.  Because the FDA has not given its OK for the use of Klonopin for the treatment of myonclonus, your insurance company may use that as an excuse to not reimburse you for Klonopin.  It's only "off label use," at the discretion of the doctor, and many knowledgeable doctors prefer Klonopin  - until they hear which insurance you have.  Rather than have a fight on their hands, they may very well cave in and go along with the FDA, an agency, I wholeheartedly admit I have no fondness for, for many legitimate reasons.  (Viagra, and it's sudden OK comes to mind; Vioxx being taken off the market for dubious reasons yet Lyrica and Lipitor remain on the market...but that's a topic for another conversation!)

      So, there you have it, the differences between Restless Leg Syndrome and myoclonus.

      A big BTW: since both conditions contribute to insomnia, both medications have a sedating effect on most patients.  Therefore, it's wise to use them at night when you're ready to go to sleep.  In fact, I take ANY meds which may possibly have a sedating effect, at night.  I try to get the sleep wherever I can find it - legitimately, of course - and after discussing all with my team of doctors.

      Basically, it all comes down to this: Restless Leg, you want to move your legs; myonclonus,  you have no control.  Now isn't that easier to understand than the BS the NIH and the FDA send out?

      And in the meanwhile, I hope all are doing their best, only better.  Ciao and paka!
      Nervous System Pathways

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      Monday, January 7, 2013

      Is Pacing Over-Rated?

      Not my little room, but you get the idea.

      It's truly amazing that in our CFIDS/ME/CFS and/or fibromyalgia world, we are never able to let our guard down.  Do so and continue ahead at your own peril.  The world, it often seems, is full of danger and you proceed as if you are in a minefield. (Can more clichés be added here?) Spontaneous acts achieve nothing, it seems, but add a bit of spice to our lives, though often at a price we're not always sure we want to pay. (Hopefully, clichés are now ended!)

      I had a rough time of it last Friday.  It had been a rough week. I'd finally reached a point where I was overwhelmed by the insomnia, the migraines and dealing with the whole thyroid situation. Constant were the aches and huge pains I was experiencing and a plethora of symptoms I'd either not registered or have mercifully forgotten.  I was exhausted, too, by the fact that my painkillers were not relieving me of any of the nastiest parts of this DD and so I decided to go with Plan B, sigh.  When things are going too poorly, I get to a point where Plan B appears to be the only means of escape.

      And I hear you!  What the heck is "Plan B," right?  Well, it's my version of Lamaze, the kind I started and honed as a child.  

      I started experiencing migraines at an early age and ended up with a means of distracting from the pain without realizing I was doing so, or even acknowledging the pain was there in the first place.  My mom honestly never believed children get "headaches"; she was completely convinced that they only cause them.  So, I suppose my little grade school brain finally found a means of escape: do some mindless physical work to distract yourself from the pain.  As I wrote in Friday's post (link), that means of distraction turned into cleaning floors, and by the time I reached high school, I always had bright sparkling floors, be they washed and waxed or vacuumed within an inch of their lives.

      Sadly, these days the only "mindless" work I can do is dust and, ironically - or according to "Murphy's Law" - it's the one household chore I absolutely abhor.  I LOVE to clean, but the DD has taken this pleasure away from me as well.  However, I thought SURELY I could dust!

      And how the house needs dusting, and a bit more!  Any room near areas where our old wood floor under the old carpeting was uncovered and refinished was thick with dust, despite our previous attempts to solve this problem.  Any rooms near areas where wallpaper was taken down and then said walls spackled and sanded before being painted, are also full of dust.  We had air cleaners going, but they weren't able to accomplish much under the circumstances.  Consequently, between a few symptoms of the hypothyroidism and the dust, I was coughing an awful lot, not to mention that my voice was always hoarse.

      So, on Friday I was in dire straits, a particularly bad day.  The insomnia, the thyroid, the pain, the sad look of the room where I keep my much-feared computer, the area where I put the finishing touches on my posts and often choose to tweet from was REALLY getting to me.  What could I do BUT turn lemons into lemonade, again?  It would be a risk, but talk about desperate times!  And talk about the need to feel better about things in the long-run!  Desperation was oozing out of me.

      So, I decided that the books in the bookshelves needed to be dusted - thus finding what I thought was the "mindless chore" I so desperately needed.  Nothing comes easy, however. I did need to add a bit of complexity to the job by getting rid of anything on the bookshelves which wasn't a book.  I finally decided that if I couldn't pitch it, I'd go the chicken's way out: stick it into one of the kid's old rooms which is already a disaster area and thus have only one central disaster area to contend with later.

      I know, it's double work in some people's eyes but I belong to the school of cleaning that thinks it's best to make one central mess to work from.  For me, perhaps precisely because of fibro-brain, it's the best approach.  Decisions are hard to make and the whole point of the exercise, after all, was to do a MINDLESS chore.  I'd already decided that the physical part be darned.

      And, as is often the case with those of us with the whole CFIDS/etc and fibro fiasco life challenges, I went too far.  When hubs arrived home late from work, he ended up helping me "close up shop" for the day.  Books and all sorts of debris were all over the floor and walking through was like navigating your way through a minefield.  I might be a mountain goat who has no problems getting through, but let's just say it's a good thing hubs never joined a circus.  He'd have served well as dinner one night for the lions - after not mastering tight-rope walking.  But patience?  I have very little of it and he has it in spades.  I suppose that's part of what make us such a great team.  So floors were cleared and one section of the bookshelf was BEAUTIFUL.

      As the evening progressed, I complained that my leg with the neuropathy was hurting and cramping and I then spent half the night dealing with THOSE pains in addition to the stuff I had relieved for a few hours while "just dusting."  Hubs was a bit annoyed, giving me sidewards looks that said loud and clear, "you SHOULD have been in bed resting."  I, in turn, was giving looks back to him that said, "you don't have to deal with migraines, do you?"  There was so much non-verbal communication going on that we could have written a long book from it and it wouldn't have taken much to turn it all into an unpleasant verbal conversation as well. (Joke, I think!)

      So, going back for more of the "I-can’t-learn School of Irene's Science," on Saturday I decided to do yet another section of the bookshelves.  In my defense, I'll say that I hadn't slept for two days and two nights so not only was I in a desperate state but my judgment was just a TAD on the impaired side.  My foot was swollen even more, tight to almost bursting, my head was still throbbing ("throbbing," such a tiny word for what was really going on!) and I thought that the satisfaction from a job well done and a pretty room would be just the ticket to make me feel better, albeit only psychologically.  But hey!  Don't put down the psychological reinforcement and satisfaction.  Sometimes it's all you have!

      After a few hours hubs arrived home.  Imagine how NOT surprised he was to see me hauling books, wiping them off, moving them from room to room, all while doing a seemingly good imitation of "Hop-Along Cassidy" because my foot was more swollen than before and putting any weight on it was close to excruciating pain.  Helping me clean up my mess, we ended up with an almost sparkling little room.

      ...and a surprise at the end.  To make a long story shorter (what?  This IS the short version of it all!) I ended up with cellulitis of the foot (and hands?). I'd spent so much time at the computer the day before (another Lamaze-type diversion) that the fluids built up in my legs, and then who knows what else happened?  Perhaps between the books and the manicure I gave myself, bacteria got into my system and bad magic took place.  Whatever it was, my hands were swollen to the point that I could barely bend them, my foot was swollen to the point where I started looking things up on the Internet (never a good idea when so desperate). My foot had become red, a rash had developed AND the foot that's always ice cold was suddenly hot as well.  In fact, I was shivering and running a fever.

      So, moral of the story?  There's a lesson for me to be learned here, but I know myself well enough that I probably won't learn for next time, though I should.  But the joy I now feel when I see the room clutter-free and dust-free was and IS worth all the pain.  For me, it was a wise investment as hubs shakes his head at what he considers to be my insanity.  But a pretty room can never be underestimated as a healing power.  Now when I go to the feared computer, I get great satisfaction seeing bookshelves that are full of old friends I've not seen in ages.  The air cleaner has worked much magic in getting rid of the dust that was stirred up, despite the best dusting cloths. I can breathe clean air, not sanded-down air when I come into the room.

      And, most importantly, when it comes down to healing: I had a "marathon sleep" of 12 hours. Yippee!  Really!  With the help of an anti-inflammatory and the antibiotic the swelling has come down enough where it isn't pain off the charts.  The fever is gone, the rash is on its way out, though my skin DOES have a reptilian look to it, the scaly look from the swelling and fever, a classic reaction to what went on.  The blue-black hue has left my nail beds.  I can see that things will soon be right with the world.

      But sometimes a girl's gotta do what a girl's gotta do, despite the cost.  As long as everything is capable of healing - that is, I'm not at risk of losing any more body parts - I'm thrilled I took the risk and made some headway into a huge project.  I've said it often enough: sometimes to survive, you need to come out of the normal protective shell you're forced to live with.  Sometimes you just can't keep calculating every step you take and every move you make.  Sometimes fighting this CFIDS and fibro animal is not rest but a feeling of accomplishment and that you've had your way, not allowing the illnesses to defeat.  Pacing, I think, is simply too over-rated.  There!  I've said it, and THAT in and of itself makes me feel better.

      As always, I hope that all are doing their very best only better.  (As if fibro-logic is ever going to win with me!)  I wish my old Russian Orthodox camp buddies and my relatives a Merry Christmas - we're always a bit out of sync with the rest of the world.  Ciao and paka!