Skinceutical's CE Ferulic Acid

In honor of our wedding anniversary today: lots of dancing!

Call me fickle, but I do so love to play around with different beauty products.  I suppose this is what happens when there is little else you can do in your life, although that's probably not the only reason.  My mom, too, has always been keen about skincare.  As a child I always thought of it as a European thing - although because of little discretionary income (hardly any!) my mom stayed with a couple of tried and true products. But I well remember when an occasional package would come in the mail from NYC, with a jar of "something" so exotic and expensive that no one but my mom was ever allowed near the product.  As years went by, I learned that the package would come from from a French-Russian lady living in NYC who made her products in her home and had quite a following in the immigrant communities. 


I always remember my childhood years, too, with my mom's very quick application of a DYI  "mask" of some sort to her face, applying a mysterious (to me) concoction made of honey and an egg yolk left on for twenty minutes before heading out the door for any event, including going to church.  As a reaction to my mom, I never cared for any skincare products but - sigh! - eventually we all do pretty much become our mother's daughters.  


And so, with that said, one of  the workhorses in MY personal supply of "stay as young as possible" products is Skinceutical's CE Ferulic treatment.  Its main ingredients are Vitamin C with a touch of Vitamin E and, of course, Ferulic Acid.  The C is there to clarify, brighten and lighten hyperpigmentation, whereas the E protects the skin from being further damaged by those pesky free radicals.  The Ferulic Acid, according to Skinceutical's PR, "neutralizes free radical activity."


I've been using this treatment on and off for four months now, approximately once or twice a week and have been thoroughly impressed with the progress my face has shown.  My old "freckles" (age spots, mom!  NOT "little flowers"!) are getting lighter.  In fact, it was because of the success of this treatment that I started using other treatments and different brands.  I think I used to believe nothing really worked so, in true "me" fashion, once I saw one product work, I went from seemingly nothing to seemingly everything.  I'm such a product of extremes! (Another sigh: this one for those of us with the DD and know our "all or nothing" tendencies all too well.)


Most importantly, perhaps is that this Skinceuticals product is intended for those who have sun damaged skin which is also dry and sensitive and  for those who wish that their skin were smoother, softer and, that panacea we're all after, radiant. I like it too because it's meant to be used in the morning.   It often seems, to me at least. that most treatments are recommended for evening/bedtime use.  While using this product, however, one absolute "must" is the use a good SPF - unless, perhaps, you happen to be like me and live in some sort of version of Batman's bat cave and never see much light.  On the other hand, I've read that this CE Ferulic and SPF work synergistically - thus one reason for its recommended use in the AM.


After applying a few drops to my dry, cleansed face and throat (I skip the chest since it's just too sensitive for anything) I usually end up putting a moisturizer on after the Ferulic application or a good SPF that also acts like a moisturizing cream, LaMer's sunblock in my case, or a BB cream.


In the beginning, I found that in applying a drop onto my skin, the skin just absorbed the drop without giving me a chance to smear it around.  It was very puzzling as to how in the world I'd ever manage to smear the recommended 4-5 drops all over.  In fact, at first I dabbed a bit of each drop on a targeted area (where the age spots were the worst) and hoped for the best.  Happily, after a month of use I found that the dryness had improved so much that the drops actually did now begin to slide around my face.  Now that's what I call improvement!  


I also have large pores on my nose and I've found that they appear less deep and the skin on my nose is smother, less bumpy when using the CE Ferulic.


So, all and all, this is a product one can't help falling in love with, especially when considering the funky skin those of us with CFIDS/ME/fibro all have to deal with.

Now, since I've stopped eating honey (in my attempt to get my body back on some sort of "good" track) that means that there's a rather large bottle of it in my kitchen; tonight I may try my mom's honey and egg concoction and see if, indeed, it will firm up my skin yet leave it soft and radiant.  Today is our wedding anniversary, so perhaps I should give myself a good facial to bring out the youth in my skin before hubby gets home!  (OK: I'm rolling all over the floor with laughter with that last bit!).


In the meantime, here's to hoping all are doing their best, only better - boy, some days I really do love fibro-logic!  I just hope fibro-brain wasn't too evident in this post!


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Good To Know About Scarred Skin

The Tomboy!

Ever since I put the silicone sheet on my arm, as instructed by my plastic surgeon, in order to minimize the distinctively ugly, and solid 30 inches of scarring - which, incidentally, gives me a rather distinctive resemblance to the bride of Frankenstein - and then had my horrible allergic reaction to the sheet, I've been intrigued by silicone. (Described here: here) 


And my fascination is not surprising - in my head at least - since most cosmetics out there, as well as a pretty vast majority of skincare, has quite a bit of silicone in it.  Since that unfortunate allergic reaction, I've been in a bit of a quagmire trying to figure out which products with silicone will cause a bad reaction and which ones have formulations which don't appear to give me a problem with the silicone.  It all really reminds me of Bayer's aspirin. The chemicals used by Bayer were basically the same as in all aspirins: it was the bark of a willow and its acetylsalicylic acid.  However, it's the formulation, the "buffered" part - which is a secret - that distinguished it from the rest of the aspirins out there, a formulation which allowed for a larger part of the population to "stomach" the aspirin, by diminishing the side effects of nausea and gastric pain, which made the original owners its vast fortunes.  


So, where am I going with this trivia?  Well, it's just that I can't help wondering why it is that silicone is so successfully carried out in some products while in others, not so much.  Each time I buy a new skincare product or a beauty product, it seems as if I see silicone in almost every product out there.  If you tried to stay away from these silicones, it would be almost impossible, and I do try!  On the other hand, I have products that do contain silicone and they don't seem to bother me.  Is this because the products that don't bother my CFIDS, ME, fibromyalgia skin have a different sort of formulation than the ones that do bother?  Is it a case of what happened to Bayer aspirin is now happening in the generic vs brand name medications? (State secret here: generics do NOT work as well as the brand name and I do get so annoyed with my insurance company when I have to fork out the mucho bucks for the name brand  medication or make a judgement call and go with the generic: it's quite the dilemma, though I realize how trivial it must sound: there are people and children out there who can't eat and I'm complaining about generic vs. brand name meds?  Still, when I take a med and it works sometimes and doesn't at others, I know it's because I've been forced to go onto another (inconsistent) generic.  But don't get me started!)


And so here we are - finally! I know!!! - with the subject at hand:  how to deal with skin that is damaged and that we want to prevent from scarring as much as possible.  And let me tell you, I am much more clumsy now than I was before I became so ill.  Part of that is age, of course, but most of it is that when you have an undependable sense of balance, depth perception (because of eyes that don't function the same hour to hour) and just a general feeling that things are "off" in the world, you had better build yourself what I call a "scarring kit."


One interesting factoid I came across in doing research for this post is that if you have stretch marks or injuries that are still pink, there is still time and a good chance of ridding - or at least vastly diminishing - the appearance of scars.  The pink shows that there is still blood flow in the area and that's crucial.  


I've had my fair share of injuries, be it from small surgical scars due to small things such as my appendix taken out, to the ridiculously big, like my latest with my compartment syndrome surgeries, something so nasty that I wouldn't wish it on my worst enemy.


I've also had nature-made accidents, scrapes from gardening, falls from trees as I was (supposedly) growing up, gravel burns and abrasions.  Just about everything, luckily, healed beautifully and I never minded the appearance of scars...as long as none were on my face.  The face: to me, that's sacred and where my vanity begins and ends. I even missed my smallpox vaccination scrape: how did THAT manage to disappear without my noticing? 


But for those of you who do not have a good relationship with your scars, the following may help.  These are my favorites for fighting these sorts of problems:

• Essential lavender oil, neat or in a carrier oil, I prefer the organic high-altitude lavender oil.

By "neat" I mean that a drop can be put right on the skin.  I know that a lot of the literature out there says to blend it in a carrier oil (such as jojoba, avocado, olive), but with lavender I find that putting a drop on directly will not do any harm.  This is a very old-time and old-fashioned "fix."  It's even perfect for burns in the kitchen, for example - and putting it on immediately is key so in our household we have little bottles of it stashed around the house at crucial places, like next to the stove.  My kids, who would rather go without eating for a week than admit that I'm right, have secretly borrowed my "extra" bottles from me, even asking for it if desperate enough when leaving home for an extended period of time.


I prefer to buy the organic, high altitude lavender oil sold by Aroma-thyme here .

• Bio-Oil - a classic that I've only started using since my surgeries for compartment syndrome back in November/December.  

I'm going by the recommendations of others since I'd never even heard of this product before, and my arm/hand is major scarring that will take years to heal, due to both the huge amount of area  and the place affected, so I won't know for years if and what is effective, come what may with my arm and hand.  Bio-Oil is widely available but I happen to buy mine from http://www.drugstore.com/bio-oil-scar-treatment/qxp165709?catid=182889  There are huge fans of it out there, so I use it when I think to.

• HealGel, invented by a team of dermatologists, is a new product and though I'm a bit skeptical about silicones, I use this off and on.   

HealGel is a relatively new kid on the block and has an incredible pedigree: it was developed by five dermatologist and one surgeon in order to treat post-operative scarring, blemished skin and aged scar tissues, keloid scar, as well as the everyday sunburn, bruising and inflammatory skin conditions such as eczema and psoriasis.  I have no hard data for it, only an "eye" for how things appear to work for me.  It's a problem in that I've never cared one way or another as to how I do with scarring - the true sign of a person who doesn't have big issues with healing skin, I now realize. I think it's worth trying, however, because it IS based on science and has such a huge fan base.  Also, my feeling is that if you're desperate enough, you'll give just about anything a try: at least this gel has quite a bit of science to back it up.

• Creme de la Mer and La Mer: the Concentrate are classics.  

These are the number two products in my arsenal, along with essential lavender oil and  the LaMer's have helped me when nothing else has.  The concentrate may very well contain a bit of silicone, I'm rather sure, but is formulated in a way that it doesn't bother me.  For best results, massage the concentrate onto the scar and then "seal" it in with the Creme de LaMer.   I'm not sure if there's anyone on the planet that hasn't heard the story of how this product was discovered: a physicist had set out to correct the horrible scarring he had sustained in a lab accident and after a few years and thousands of different formulas, he came up with LaMer and the rest was history.  It has algae (and I do so love algae for skincare) and needs to be fermented for a few months.  When a duplication of the elixir was attempted by other companies, the results were never successful and so it had to finally be bought by Estee Lauder.  I have to wonder if EL tried to fudge it on some of the steps (it's a time-intensive process: think scotch!, which is why it costs so much) because I do not think that LaMer is the same as it was when I first started using it back in the '90's.  But this is just one person's opinion and it's still an incredible team that deserves room in your arsenal if you can afford it in any way.  


Happy Monday, everyone!  Here's to all feeling their best: if not better!

Trying To Be Productive As Well As Amused

Birchbox on the left and Beauty Bar on the right: love the earphones, the Jouer and the Sisley!

I know that signing up for beauty subscription services may be rather passé but even though others may be bored with them, I'm absolutely thrilled to have signed up for a couple.  Color me easily amused and quite bored - even desperate if you must - but I think that they're a bit of fun - perhaps because I need a life?  (I'll not take that bet - it's too easily lost!)  


At any rate, when I signed up for Birchbox and BeautyBar three months ago, I didn't realize that receiving four or five beauty samples twice a month (one from each company) would turn into something I would look forward to like a young, budding, in-training, teenaged prima donna at Christmas.  Yes, color me easily entertained too; however, I also recognize the fortuitous timing as I'm supposed to be on strict bed rest for the next month. (Yes, I still sound like a seal when I cough!)


I can see myself eventually becoming bored with the concept but for the moment they serve my purposes.  Both companies send out boxes that are somewhat tailored to one's tastes. They wanted my approximate age (good since that increases the chances of anti-aging products and decreases the teeny-bopper products I have no one to pass along to), they know I'm not especially into hair products (I've given up on experimentation with my hair as a lost cause, product-wise: I stick to a few must-have's and call it a day) and they're aware of a few other "facts" about me, such as I tend to like a conservative look and not cutting edge, though I must admit to a surprising fondness for the turquoise nail polish that came in the other day.


Thank goodness I have this bit of "fluff" in my life because whenever I go through a bad spell (understatement of the decade) I tend to go a bit off track with my entire life (is this a post for understatements or what???) and that all adds to my spiraling downward until I can finally say "enough!" and figure out some sort of mind game that will force me back on track.  This week I've tried quite a few things with no luck, so I'm putting it out there via this blog in order to shame myself back into "order."  Here is how I'm starting "back," if I can keep myself at the level I am right now and not get even a smidgen worse.   If I can get through five days of this, I'll have a good chance of succeeding:


1. Weigh myself each day and RECORD the number on my calendar. My 20-lb. weight gain is downright depressing but the worst is over, I hope, since I DID finally force myself onto the darn scale, a huge move.  And, BTW, I record my weight in code...I'm NOT crazy!


2. Cut out all sugar. That includes fruit and that honey I don't even like!


3. Go back to "food combining," or my version of it. I'm convinced that all of us do best on some foods and worse on others and it's up to us to see which work best for our individual selves.  That is, don't listen to the so-called experts - after all, they change their minds as often as Seattle changes its weather, about every ten minutes from what I've heard.  You know your body best, so listen to it and learn from it.  Food fads come and go why?  Because a certain percent of the population can be always be found to be successful with any kind of diet. (A topic for another day!)


4. Go back to taking my vitamins religiously. (More later on this too!)


5. Start back to what is over-the-top hygiene for me, a person with CFIDS/ME, fibromyalgia, pain, sleep problems and migraines, crazy temperature fluctuations several times a day accompanied by sweats.  For some reason this really helps, though paradoxically I have to be careful and not over-do it.  Overdoing anything at all can accelerate the pain and insomnia for heaven-knows-what reason(s).  So, it's all a rather bizarre balancing act.


6. Drink tons of water. Yes, it sounds so pathetic to say that I've been too weak to even drink enough water, but it's true nonetheless.  In fact, all these "goals" are so easily obtained for the "normal" person but feel like bucket list items for "us."


So, I'll let you know how things come along. I have GOT to get myself in gear.   Summer's almost over and I've accomplished almost nothing!  Worse, the remodeling has stalled because of my being too sick to have anyone in the house, which puts me into another downward spiral.  If we don't get our walls painted soon, I may have to go jump off the nearest cliff as I can't bare the thought of another holiday with scarred walls, little furniture and certain rooms filled to the rafters so yet other rooms can be worked on.


What a truly crazy life I lead: I haven't been to our local mall in at least five years but shopped at the Petronas Towers just a few weeks ago.  Surely there must be a happy medium!  (Huge goal: TJ Maxx and Michael's, which I've never even been to!)  Perhaps the subscription service is one easy possibility that will lead to more.  At this point I must keep in mind that thing I sooo hate to say to myself: baby steps.  Annoying?  You betcha! I was never a baby-step person, not even as a baby, but it'd be great if I could get myself to feel just a tad human again and start getting some feelings of accomplishment!


Here's to all feeling their best, only better!


Have you tried a subscription service and if so, what did/do you think of them?

Identifying Sensory Overload - and how to deal with it.

Even had I NOT been an organized person, going to 13 years of sleep-away summer camp would have ensured it.  Here hubby and I are passing the experience on to our kids.

Before I forget: I'd love it sooo very much if you could go to my Facebook page and 'like" it.  You don't even need to be enormously enamored of me: it's OK...just "like" it, PLEASE!  Of course I'm not sure why anyone wouldn't actually like it - huh?  Ha!)  But I do need at least 30 people who "like" it (that's hitting the big thumb next to the image where the photos "icon" is up top) in order for me to get any sorts of stats from Facebook! 
This is the link. 


Pretty please!  I hate to beg but have decided that I can handle it if it gives me an idea of the number of readers going through that site and will perhaps give me a better handle on what my readers really do want to know! :) Thank you, thank you, thank you to those of you who have already liked it and I'm sure wonderful things will happen to you if you do: Karma!   And tell your friends if you have many of them, which I'm sure you do!  OK...enough degrading of myself! ;)


Now onto the subject at hand, dealing with yet another aspect of CFIDS/ME, fibromyalgia and its other goodies.
                                   **********************************************************************


Organization!  A decluttered house where there aren't too many items not needed, ridding my life of the things that don't serve a purpose.  These are the mighty and lofty ideas, desires and dreams I engage in these days:  well, if truth be told, I have actually done so for decades.  The crazy part is that I was actually BORN organized and one who decluttered, with the exception of the books in my life. (Would YOU throw out your friends? Aha! Point taken!) Everyone simply must have something that drives the partner in a marriage mad and these are pretty much the two biggies: the organization - hubby's downfall - and the house bursting at the seams because of books everywhere one turns, my downfall.  Oh, and photographs.  Oh, and the boxes my beauty products come in.  (See: I do like to be fair!)


But now that I live with my fibro-brain I find that organization is not just a help but is key, especially the older and sicker I become.  If there were only one thing that I could change about my family, "organization" and "decluttering" would probably be among my top picks.  It frustrates the heck out of me that no one seems to "get" just how much of a problem this is for me, how literally sick I get from the sensory over-load and how often I burst into tears from it - tears that lead to anger because I so detest them.  To me they are a signal of defeat and I absolutely cannot tolerate defeat: that's quite a slippery slope to doom as far as I am concerned.


When I do walk into my closet, for example, and see a mess, my brain short-circuits and I'm totally defeated.  To make things worse, with a mess I can't see what is right in front of me, big or tiny.  If things are moved around in the medicine cabinet, for example, or too many items have been stuffed into said medicine cabinet, I cannot for the life of me, literally, register that which is right in front of me because my brain fries.  Suddenly, nothing makes sense and I'm blinded.


I'm so adamant about the need for everything being in a proper place, and not having clutter, that I've used the "blind" analogy to my family for decades: I try to press upon them that were I blind, everyone in the family would KNOW that things need to have their assigned places and everything would actually be returned to its proper place, no one even questioning the necessity.  And yet, no one understands that I'm handicapped by messes and really and truly cannot see what I'm looking for if there is a mess.  Even on a "good" day this is a problem, but on a bad one?   It becomes a complete lost cause making me go downhill even further and faster.


The sensory overload not only triggers migraines, but in milder forms, more confusion, a sense of being overwhelmed and unlike the "old real Irene" who was almost manic for organization.  I now immediately start to shake, break out in a sweat, need to fight useless tears because several things happen: I can't begin to know how and where to start cleaning a mess, my body is too weak to clean up a mess and my brain can't even begin to understand where or how to start.  Imagine how frustrating this is to a person who, for example, used round plastic thingamabobs (much like the ones found in clothing department stores that are used for sizes) which I would slide on a rod of each child's closet and each thingamabob would be a marked stating the day of the week said outfit would be worn.  Oh, I wasn't a fanatic about it: the kids had choices, but there was always the system in place for most days.  Talk about cutting back on morning drama!  Each child had two weeks worth of outfits hung out for them.  It was survival: in order to be a half-way effective mom, I needed to keep things organized (each child was also color-coded with bins for shoes, school work, the toys that belonged to each child individually instead of them all as a group.)  


Furthermore, I resent the inordinate amount of time I waste each day to keep finding things all day long...and I'm talking about easy things such as the remote, cell phone and two pairs of glasses that keep getting lost in the bed linens!


Going one step further, when I get a migraine and need to take a med to smash that sucker out of oblivion, I often cannot even realize what needs to be done.


Many, many years ago, when my children were young, I once came down with a monster migraine while hubby was out of town.  Somehow I had the wits to call the kids' babysitter, a mother's helper almost, except that L started out with helping us when she was only 13 years old.  At that age and with my young "babies," I didn't leave her alone with the kids but she certainly spent a great deal of time at our house just helping me keep up with the three little rascals, playing with them in our tiny yard while I fixed dinner and so forth.


On this particular evening it was rather late to be calling anyone and I certainly didn't want her walking over to our house in the dark, yet I'm still not sure what it was that actually made me call her: it was just so out of character for me.  Yet there must have been something very off in my voice that made her realize that I was really sick.


"Are you having a migraine, Mrs. X?" she asked?  "Is your head hurting?"


I was too ill to answer and so by now 14/15-year old L kept on with, "Mrs. X.  You're having a migraine.  Walk to your bathroom.  Go to the mirror!  Are you walking to the bathroom?"


L commanded me through the paces of getting me to my migraine medication, knowing exactly where it was located in my bathroom, picturing in her mind where it was in my medicine cabinet, on which shelf, how many bottles from the end of which row, down to what that bottle looked like and how to open it.  


I've written before that back then the migraine medications were not especially effective, but the med I did take, thanks to our teen-aged L, was enough to keep me out of the hospital and my toddlers safe until hubby was due home.


If you need to convince your family or your roommate or whomever of the importance of keeping things organized, putting things back after they've been used, everything having its proper place, feel free to use my cautionary tale to drive home your point.  (However,  at the moment I feel like a fraud/failure writing this as our house is in such flux right now that NOTHING can be found nor are we even sure if we even own a lot of things any longer!  Darn you, remodeling!)


Just as a glare can trigger a migraine, so too can a brain short-circuited from seeing a mess.  Of course, the reverse is true too: nothing puts me in as good a mood as seeing a clean and decluttered room with everything in its place.  And in an emergency, having things in their place can be crucial.


On that day, L won her stripes and I never worried if I needed to leave the kids alone with a very mature 14/15-year old if I needed to run a quick errand.  We were all lucky to have L as our official babysitter as she grew up into a young lady who eventually left home to go to college and start her own family and when we see photographs of birthday parties she helped me manage from becoming total zoos and photographs in which we celebrated many other milestones of our lives, we remember her fondly.


Perhaps that should also be a tip: find yourself a L.  But I can tell you from experience, they are hard to come by!


And I am now going to go play one of my mind-games: I'm going to go directly back to my bed, but on the way I will put 10 things away.   I like the game, "The Power of Ten," since it's about the only way I can get anything at all done these days.  And since I had the audacity to write it down here, I must carry through!  Sometimes I think I'm my own worst enemy!


But to sum up:

• Being organized is key to keeping you from totally going nuts.
• Owning less rather than more is especially important to "our" lives and getting through them.
• Everything in its place is a downright birthright - not to mention an important survival strategy.
• Playing mind games that work for you gives a huge heads up.  (More on that in a later post!)

I hope everyone is feeling as well as can be, only better!  Happy weekend to all!

Loving A New Marine-based Cream.

I do believe I've found a new moisturizer that will be spending some time on my "semi-permanent" list.  Given the fact that those of us with CFIDS/ME/CFS and fibromyalgia have such sensitive skin, I'm always excited when I find a new skincare product that actually works the way it's supposed to.  And for some reason, it's moisturizers that I have the most problems with, just as I'm hitting an age where I really do need good moisturizing products for skin that's becoming very dehydrated.  The new product I'm excited about is "Pro-Collagen Marine Cream" by Britain's luxury brand Elemis and I've fallen in love with the cream for several reasons:

• It's a marine-based formulation, like my beloved LaMer.  In this case, the marine algae is Padina Pavonica.  Everything I read about various types of marine additions to skincare products convinces me that it's a really good way to go.  My son is into aquaculture and over the years we've talked about the many pluses regarding algae and other oceanic "goodies" and I'm always amazed at what promise that field holds for skincare in the future.
• Though on the pricey side, it takes very little to spread completely over the face, neck and chest areas and it sinks right into the skin, not feeling at all greasy.
• The feel of the cream is light, almost as if it's been whipped and I love the texture for the summer, especially with the very hot weather we've been having.  Because I was sweating so much by the time I was finished with my bath, (ugh! do we all need to take baths after baths and where does it end?) I put on a very thin layer on my face, sort of the absolute minimum to trap the moisture in the skin, while waiting for my body to "stabilize."  After I had rested, drank several large glasses of very cold water to push my blood pressure up to a non-fainting level and stabilized my body temperature, I added another layer of the cream to my now non-sweating face.  A few hours later my face feels lovely and soft.  Each time I've used this cream, the end result has been surprisingly and consistently excellent.
• It's an anti-aging cream. Need I say more? Well, in case I do, I've realized that my face is suddenly getting a bit saggy, so I'm going to start concentrating on that aspect of my skincare. I still have a few months before I hit a very depressing birthday and I'm hoping to be in as good shape as possible for that day, in order to soften the blow of the number! (Which means I need to stop my vacation eating and get back to where I was before the trip to KL!)
• Back to the anti-aging aspect of this cream: Elemis claims increase cell renewal (good!), to reduce fine lines and wrinkle depth by 78% as well as increasing hydration and moisture levels by 45%. Personally, I never trust these sorts of numbers because I'm one of those skeptics who believes that statistics can be manipulated to anything the doer wants to "prove."  Having said that, however, I think we all have a radar of some sort that gives us an idea of whether or not something may work, one of the reasons for the effectiveness of samples!  I like the feel and have a good sense about it.  I especially like the fact that the cream has good healthy ingredients and looks "clean," and though not claiming to be "organic," it's still not chockful of preservatives and chemicals.

So, my face has not broken out, my skin has not grown any nasty surprises nor formed any ugly craters and the feel is lovely.  I think I've found a winner for the rest of the summer, and hopefully, adding a lot of moisture and elasticity to my suddenly-aging skin!

Will I Ever Accept My Reality?

In my wheelchair in Amsterdam, I never noticed the awful color of my lips, my hubby's signal as to how I'm doing! 

How long exactly, does it take to recognize and realize that one is sick?   And I mean truly, life-altering sick, not just getting laid up in bed every now and again?


It's been well over 35 years that I've been ill.  Unfortunately, I suppose it wouldn't be too much of an exaggeration to say that somehow I am pretty slow in the understanding of consequences with this illness.  Somehow I keep thinking that tomorrow I will wake up and be back where I was in very early 1975, running around with my course work, teaching, dating, going to parties, planning my future as to whether I should get a PhD or go to law school, agonizing only about how I would leave so many really incredibly fantastic friends, ones who later proved to be worth much more than their weight in gold when I became so sick.


I can't seem to recognize the reality of my "life style," and yet my hubby and I could never count all the hospitalizations I've had over the years.  Heck, there was one year alone that I spent more days in the hospital than I did at home.  There hasn't been a year at all since 1975, I don't believe, without a good lengthy and serious hospitalization.  I can't even remember the names of all the doctors I've been to nor the names of many of the medications I've been on and there have been times when I've been on 25-30 different meds at one time!  And before anyone expires from seeing that number and thinking I've gone to quacks, let me assure you that I've seen the best except in those cases when I was told that I should save my money and energy because there is nothing that THAT particular specialist could recommend or improve upon!  (HOW depressing is THAT???)


I am still on such a vast number of medications that literally half of my carry-on bag on the plane was filled with said medications, and that was with packing some of those plastic amber containers inside one another like little "Matryoshka" nesting dolls, the smaller ones inside larger ones, tripled up in quite a few instances in order to save space.  


Oh, I knew I'd get sick, real sick, from the trip, but it was all so abstract until the time came to pay the piper. Somehow, I kept thinking, in the dark recesses of my mind, that surely I exaggerate my illness - though whether it's because I've been told so by society for so many decades, because early in life I learned that I can overcome anything I set my mind to do, whether it's out of sheer conditioning, or even stupidity, I'm not sure.  Perhaps it's perverseness because my family is always giving each other looks when I come up with a great plan or because I just want to shock the hell out of everyone who's written me off, or perhaps it's because of my family's tendency to treat me alternatively with kid gloves or to dismiss my plans.  Whatever it is, I still cannot believe that I am really and truly ill.  


I also know that I spend entirely too much time very angry and disgusted with myself, wasting precious energy. After all, I look like everything I've always abhorred, the lazy person.  Worse, I can't do the things I love to do. Just today I spent way too much time trying to analyze how I would wash a wall that is all mirrors and the only thing that made me realize how stupid the move would be was NOT because I came to my senses but because I realized that the painter who took down the wallpaper in the hall will need to plaster up and sand down some huge cracks and gouges, thus rendering cleaning of the glass wall a, well, extremely idiotic move!  I spend too much time silently angry with my family as well, feeling as if they cramp my style, especially when they point out the signs that indicate that I'm not doing well.  I hate that they just might be, or are, right.  


And, of course, they're right - that's what makes it all so frustrating and truly maddening!  When ever-annoying hubby tells/begs me to stay in bed and not do anything, there is a perverse part of me that wants to rebel.  I HATE being told what to do, so hubby tries not to "warn" me, but some days I suppose the temptation is too strong and he goes against his best instincts.  I mean, I really hate any limitations.  Looking at a profile of what someone described me as on Classmates.com, I was delighted to see the main characterization as "gutsy." I'm quite proud of that description!   I was a tomboy who actually jumped off one-story buildings quite frequently and would get so disgusted with my poor younger brother because he objected! (What a killjoy!   Hummm...he also didn't want to shallow-dive off a fishing pier where I then was almost paralyzed from a misjudgment in how deep the water was - only inches - again, what a killjoy!)


But as disgusted as I become with the "guidance limitations," I must admit that this week I've almost passed out dozens of times, quickly grabbing hold of any near-by furniture, or a wall, as I see stars, then blackness, my head spins, my legs start to melt, I feel my blood pressure dropping and I break out in a sweat, getting all clammy.  It's very annoying because I would really like to unpack my bags.  This is usually a two-year project - REALLY - and I gave myself a two-week deadline this time.


And we SHALL see.  I am, after all, on a self-improvement quest this year.  I've had it with doctors at the moment and am determined to live life MY way this year and darn the consequences. I want liberation! I crave liberation and darn it, I deserve liberation.  I'm so tired of counting and analyzing each step I take and though I do want to do a lot of the things that do help me, I'm mighty tired of marching too often to other peoples' drums, especially since I've practically pioneered this darn illness.   Few know the poop that's coming down the pike for them because so much of it IS so phantasmagoric.  Oh, I can just hear shrinks galore saying things like "delusions of grandeur" to the other side of the darn spectrum, "she's sooo in denial" to everything in between.  It's rather scary putting your thoughts out there because there are so many "shrink" type people who will just love to analyze what we write in our posts when they have little more to do than clean out their bellybuttons on listless weekends.


And yet I look at those coming down with CFIDS/ME/fibro and its myriad of complications, especially the young "kids" in high school and/or university, and want to scream at the top of my lungs and shake some sense into them and say, "look at me and do NOT do what I did!  Take a page out of my book.  Do you really want to end up like me???"


How I wish I could shake sense into them! If I could, here are some points I'd like to make:


1. Do not overdo at all.  This is a cardinal rule.


If you are in school, do not force yourself to go to classes and finish your degree(s) "on time" or even early.  I do not know what my rush was all about other than I had tunnel vision, school cost money I didn't have, so I took too many courses each semester in order to finish early.  One Vietnamese accupressurist who did some of the most gifted work I've ever witnessed and experienced made an interesting observation about six months after seeing me weekly, a man of VERY few words: "I never meet someone so dead who still alive."  Did I mention that he spent approximately six years in a Vietcong prison under some of the worst conditions imaginable?  (I only know this because people like to tell me things and I'd be asked, what did so-and-so tell you today?  I heard him TALKING to you through the wall!")  He also pointed out that I was never able to do much with the degrees that I'd earned, due to my illness.  I sort of screwed myself big time, in ordinary parlance!


2.  Today we KNOW that the best way to beat this nastiness is through rest, pacing, lessening the stress load, etc., but the more you do during this "window of opportunity," the less the chance of overcoming this nastiness.  This is tough love talking here, reality!

Unfortunately, the longer you go sick, the harder it is to overcome this illness and that's why it needs to be nipped in the bud.  When Ampligen first came out, there was a reason for the five-year cut-off date.  It's believed that once you've had the illness too long and too severely, you're dead meat, so to speak.  My analogy, though a bit flawed, but enough to give you the idea of what I mean, is that I am the patient who got polio before the vaccine.  No amount of help cured the polio victim.  But though we still don't have an ME vaccine, we do know that with proper rest, for as long as it takes, CAN work to get you back to pretty much normal.  I've seen it happen: not often, but in the cases I've seen, the attitude was the very opposite of mine: total dedication to selfish resting, no helping anyone, no exertion of any kind, total devotion to self and determination to getting better and screw anyone else out there.  It's not easy and at the time it took a lot of selfishness because NO ONE was advising the amount of rest and relaxation really needed and the amount of devotion to it.


3.  Tiny CFIDS/ME factoid:  I also found it interesting that the further you get from the equator, the higher the incidence of CFIDS/ME/fibromyalgia.  To me, this reinforces the "overdoing" concept.


I was shocked the first time I heard this, in a jewelry shop in Amsterdam, of all places, because the lady waiting on us asked about my "condition," since I was in a wheelchair and the shop WAS teeny tiny, to put it mildly.  The first part of the surprise was that she knew as soon as she saw me that I had ME. Her sister had it too, quite a bad case of it at that.  I find it amazing how often we in the CFIDS/ME/CFS and fibro community can recognize one another. I'm convinced that we must give off some sort of signals, looks or even ME pheromones to those in the know!  At any rate, hubby, who's quite a bit more in tune with these things than I've been at times, had quite the discussion with the woman and I learned so much that day. To be frank, at first I thought the woman was a bit nuts but hubby assured me that this was indeed one very much-discussed consideration at the time. There is a theory that the colder climates make for less rest than in warmer one. That is, living in colder climates produces more Type A personalities because in hot climates it's believed that the heat zaps one of the energy to overdo. Interesting.  I also think that was the day that made me realize it was indeed OK to use a wheelchair if I needed it. I finally made peace with it, not feeling quite as much the fraud, the person begging for attention, all because I got validation from someone in the oddest of places and circumstances.


But what I haven't made peace with is KNOWING just how sick I'll be from anything I do...  I just have no radar for it and certainly no tolerance for it.  I suppose it just goes to show us how much our youngest years influence our lives and then how much society influences that "baggage," be it good or bad.


And so, I doubt that I'll ever truly come to believe that I'm really sick.  I'll play-stop to a certain degree to make my family happy or to stop them from saying the same message in a thousand different ways, "but mom!  You knew what would happen!"


Ah, but do I really?  I think not.  Had I known I'd be this sick from flying to Malaysia would I have done it?  Well, I didn't believe I'd get THIS sick (after all, it's been six months since my last hospitalizations - I was on a good roll! ha!) but yes, you can bet your sweet bippie I would have gone anyway!   Because really, I have a hard time believing that when all is said and done, I have anything truly more seriously wrong with me than a weak will.

Trying To Look and Act Human Even When Sick.

Bioderma, Clarins, the Omorovicza "mitt," the Sisley face mask, and the Elemis Papaya Enzyme Peel

I'm afraid I'm pretty ill at the moment. In fact, worried hubby stayed home to keep an eye on me in the AM - a rare occurrence - and I kept asking him for cups of tea with honey. Saying that I am not a huge fan of honey qualifies as an understatement: the last time I had tea with honey was when I came down with the bug that led to the CFIDS/ME/fibro - when my mom flew down to my university to "nurse me back to good health" - so my request for tea with honey pretty much scared the bejeebees out of hubby. I certainly hope the tea and honey work better now than it did back in 1975!

At any rate, when flying home, I came up with a few ideas that I think will be successful for me if I ever have to fly again, which I sincerely hope not, given the unsettling experiences I had coming back.  One day I may write about them, but for now I'm too "verklempt," as Mike Myers used to say on SNL.  I'm just glad I'm home, where I should be, recovering from it all.  (Lawdy! How DO I Manage to sound like such a drama queen!)
So, getting back to my thoughts and ideas. 

• A surprising and successful way to find use for something I didn't care for before:

I was just about to pop a mitt-like washcloth into my checked-in baggage, when I experienced a flashback to the skimpy warm washcloths on the plane that are occasionally passed around before meals.  I received said washcloth "mitt" in one of those trial-sized kits (Omorovicza )which, at the time I thought was a total waste of money.   Now, however, that said "mitt" has found its "calling," I'm more than thrilled that I have it.  
I simply wet it, wrung out all the water I could and popped the thing into a ziplock bag and slid it into the top - and thus easily accessible - compartment of my carry-on.  Every time I needed to wash off my face or hands, I turned to a clean area of the mitt.  

And good grief. This is not a germaphobe talking, just a relatively clean person: those planes are absolutely filthy! Even though business was much nicer (read "cleaner") than economy, still....  And since I try to stay away from the bathrooms as much as possible because of the germ factor, this damp washcloth turned out to be an inspired move. I liked that there was no stickiness after I used the "mitt." I find that any kind of wipes leave behind an unpleasant stickiness.  I can actually see myself using this trick even for a trip by car or train.

• The Bioderma worked out so well that next time I'm going to double the amount I take.  

(Did I say "next time"?  Excuse me while I take my temperature.  Yes, I'm quite delirious!)  I just need to put more cotton pads into the skincare and makeup bag I brought on board with me (hypothetically speaking, of course!)  In fact, I was so obsessed with the 3-1-1 rule of liquid contents taken on board that I kept getting completely confused and kept thinking I needed to take as few items on board as possible.  Fibro-fog really had a field-day with me!

• Skincare masks turned out to be a huge "face-saver."  

My skin was actually in better shape getting off the plane than it had been before getting on, thanks to constant hydration and fooling around with different products.  It made the time go by more quickly (well, almost) and kept me busy.  And yes, I'll be doing a review of the masks I've loved so far, as soon as I can get myself together and run a couple more experiments.  But I do love them completely!

So, there you have it: three ideas that really worked. I'm sure more will come up as soon as I can wrap my head around all that's happened, as well as once my fevers stop torturing me!

In the meanwhile, I hope everyone is doing as well as can be, "only better"!   


NOTE: I've corrected some of the content. Sorry about the errors. It appears that I was indeed a tiny bit delirious when I wrote this post: I've come down with croup, of all things. I sound just like a seal when I cough!

I'm back! Well, almost.

This ad in the basement of the Petronas Towers cracked me up!

Hi all! I returned home very early Sunday morning and am crashing badly. It'll take me a day or so to write a real post, etc. I sooo hope I'm not jinxing myself by saying this. In addition to "knock on wood," perhaps I should also add the Russian "tphoo! tphoo! tphoo!" since I used only "knock on wood" once I arrived in Chicago. Right after that, everything then suddenly starting unravelling and by the time I arrived in Pittsburgh it all became way too much drama for me!


The trip home was a "trip"! But fear not! ;) I have a few beauty products I bought in KL, as well as in duty-free, which will be tested. I also have some good travel tips, good for many, but especially for those with CFIDS/ME/fibro. And I have loads of adventures to describe. Oh! And I do need to organize my pictures - I wasn't able to put up any pictures with my posts, so that needs to be remedied!


Now if I could only get my body to stop hurting and for my brain to start clearing out some of the fog in it and sending that fog somewhere very far, far away - would it be too much to ask for it to remain away? Yeah! - well, then I'd be in business!


Finally, one teaser: one new beauty product worked magic on my face, a beloved product continued proving how much I love it and need to restock, pronto!


Later! Hope everyone is feeling as well as can be, but even better! (Fibro-brain logic!)

Putrajaya, where we stayed in KL.

The Uglies We Don't Want To Talk About

Because of a fancy Flower Show, each night there were extremely impressive fireworks.

Since this IS a CFIDS/ME/fibro/insomnia/pain blog, I should occasionally, at least, talk about some of the "nasties" out there.  Oh, and give my take on them as well.  After all, otherwise, why are we here, other than to hear about my wild adventures and experiences?  Yes, yes, I hear people all over saying, "no, no!  Be your charming self...we don't need the nasties!"   But proceed I will.  I do so hope y'all can forgive!  (This, I'm afraid, is my feeble attempt at humor!)

So on with it!

This year I've been getting a lot of aphthous ulcers in my mouth, otherwise known as "canker sores." I've not really had them a lot before, intermittently off and on over the last few years, though relatively rarely, usually after something silly like accidentally biting my tongue. But this year, they're so bad that my entire tongue has been affected by them, along the ridges of the tongue, the back, the sides, the front and throughout, repeatedly. They can and do affect the back of my throat, the roof of my mouth, inside the cheeks, and along my gum line too, but not as often as with my tongue. They are painful little monsters, and it's gotten to be so bad that when they're in full-blown force, I have trouble swallowing anything whatsoever, including saliva and water.

I've talked to my doctors about them, of course, and have gotten sympathetic nods of understanding and I've been told that it's not surprising that I've developed this problem, especially after the huge amount of stress our family's been under for the last two years. My body is starting to rebel, now that it sees that the fight-or-flight mode it's been in is starting to abate (KNOCK ON WOOD!). But understanding this isn't helping much, so I'm trying to be a bit more targeted in my approach to keeping them at bay, as I'm convinced that there is more here at play than "simple stress."

I read in a few places that there are a few things that can contribute to the frequency of this condition and in doing a bit of my own research on them, here are some of the more interesting factoids/thoughts I've found and formed:

• Stress seems to be the unifying bad man - yes, stress, the mother of all evil, it seems, and to me, an all too often convenient excuse of science when something is not understood. Furthermore, stress is especially the cause of the proliferation of them. Mine can start with one or two and disappear, or the opposite, can, and usually, happens: they start multiplying and taking over like some weird version of a campy Japanese terror movie. I feel as if tiny little aliens are invading my mouth. Come to think about it, I suppose they are!
• Lack of sleep (the bane of my existence) can cause an outbreak.
• As disgusting as they sound, they are not contagious. (Whew!)
• They are often accompanied by swollen lymph nodes and even fevers...as is the case with me.
• And here I go with my political incorrectness - it's been a while! They seem to occur more often in non-smokers(!) Funny, I never had them before I stopped smoking, almost two years ago.
• Sharp food, such as toast or potato chips can trigger them, as in physical trauma. Actually, I've noticed cheese doodles are a culprit too. (Call me wild and crazy but every once in a while I'll get a cheese doodle craving...that'll have to stop!)
• Citrus fruit is a contributing factor. I forgot this one because it's so counter intuitive and got a terrible case, not surprisingly, on the plane flying to KL: stress, lack of sleep and orange juice was a winning (or is that losing?) trifecta. I also find this to be ironic because I so often drink OJ to boost my immune system. By the time I was on my way to Tokyo, my mouth was in such bad shape that it took everything I had in me to keep the tears at bay.
• Vitamin C has also been accused of being a culprit. I'm not happy with this little tidbit since one of my favorite facial treatments to reduce hyper-pigmentation (age spots!) and cause new cell turn-over, is full of Vitamin C. I've told myself that I'll watch it and not use this product if I have a break-out (THAT should be fun to see, given my memory, or lack thereof!) and I'll let you know how that comes along if there is anything pro or con here. I do know that what you put on your face does end up in your system, as I've tasted lavender oil, the papaya in a face mask or even the clay in a clay facial mask treatment.
• Because certain types of toothpastes (those with SLS) are suspected in contributing to these ulcers, I've tried changing my toothpastes a few times; I've also tried changing toothbrushes often, even though they aren't supposed to be contagious, as well as tried different types of mouthwashes, with alcohol - to kill whatever - and without alcohol - to just clean the area. Nothing, alas, seems to make a difference.
• These canker sores all too often are in for a long engagement, of at least three to four weeks, or longer. Worse yet, too often they'll be almost gone, and then bam! Right back again! For example, if I've not had sleep for a night and day (which is a frequent occurrence), they viciously come back.
• They also rob you of any energy. I couldn't believe that I was too tired to break the lock on the hotel bar and so had nothing to drink for close to 15 hours because I was afraid to drink the Chicago water: I'm not a prima donna...just someone who tries to realize how precarious my health is and, am, at times(!) reduced to being a slave to it!
• The lack of certain vitamins/minerals/nutrients (Folic Acid, Iron, zinc and Vitamin B-12) are suspected to be a cause...I laughed when I saw that - lack of Vitamin B-12 was funny since I get daily injections of Vitamin B-12 and my iron levels are fine.
• Celiac disease has been associated with these ulcers and my tests came back that I did not have it, just as I suspected. Neither do I have Crohn's Disease, nor do I wear braces.
• Dairy products are implicated. (When are they not?)
• Immune disorders are also implicated. I think we all know that one, but where does that get us?

So, what do I think? Really, I believe that no one really knows and that a lot of "causes" are thrown out there. I also know that I get rather annoyed when I see "stress" thrown into the mix because it comes all too close to throwing CFIDS/ME/fibromyalgia, and even sleep and pain, perilously close to the psychiatric wastebasket, just as "we" are climbing out of it!


In the meanwhile, I'll continue to monitor this nasty turn of events.

Notice the purple triangle up top and then the red one on the bottom.   This was a bridge that changed colors every few seconds, going from white to red to turquoise, to purple.... extremely beautiful as well as mesmerizing!

The Party's Over - With A Few Pictures...

Petronas Towers in Kuala Lumpur 

Now that the party is over, so to speak, and my adrenaline is completely depleted, I have absolutely no idea how I will be able to make it home. After a party, you're running on "wasn't that fun" fumes for a bit, but really, everything is a mess, the balloons are sagging and much air has gone out of them (metaphorically speaking) and you're suddenly exhausted, the kind of exhaustion that often causes involuntary tears, the CFIDS/ME/fibro kind, because it is so much more than exhaustion and simple sensory over-load, as well as being brain tired/fried/fogged. It's almost indescribably more.


That's how I feel today: it was a good party. I saw my first child get married on Sunday and on Monday I even managed to go with hubby and the newly-weds to the famous Petronas Twin Towers, did a tiny bit of shopping, and waited for the dark so we could see the beautifully colored fountains and breathtakingly stunning lighting of the towers.


But though my feet held up marvelously, they are full of blisters and are signaling me that it's time to go home, as I still have four more days here, days I know I need to gather up the energy to make yet another trip half-way around the world. The rest of my body is screaming for its own bed, but my brain is trying to figure out how we'll - body, brain and spirit - ever get there. Packing needs to be done. Changing flights will again be a challenge. Duty free shopping is, as I feared, impossible (thus, no fun!) and sitting on tarmacs for hours puts me in a mood that says, "it's just all too much."

But as I rest up today with my brain-fried, beaten-up body and try to rest up enough for the journey home, I can take satisfaction in that I accomplished two "superficial" things. I say "superficial" because the biggest joy by far - completely immeasurable - was meeting my son's now wife and her parents and siblings, not to mention the parents' many brothers and sisters. Everyone was so kind and gentle, words I'd use to describe the Malaysians in general. This is an experience I'll never forget and will always cherish. And the couple was kind enough to take us shopping while they had wedding plans of their own that needed taken care of, as well as spending time with us the day after the wedding, the only day they had off until their delayed honeymoon. And it was, truly, wonderful to spend time time with them, to see the interaction between this beautiful, young couple.

Nighttime display of colored fountains, KL has a stunning "City of Lights" look going on!

But my "superficials"? At the Petronas Towers we were almost overwhelmed by all we saw. It's a beautiful mall for the first 5 or so floors but since we were there on a weekday, it didn't have too many people, nor was it empty either. It was absolutely great not just for window shopping, but for taking in the magnificent architecture, and my all-time favorite activity, people-watching.


Somehow my brain didn't go into sensory overload. When it came to finding a restaurant, for example, we left the first one, since the music was entirely too loud for me, and managed to find a quiet restaurant with, thankfully, few customers. The Indian food was delicious and the wait staff was superb, which I have come to appreciate in this beautiful country.


I even made a few purchases: a couple of books about Malaysia's history after WW2 dealing mostly with how Malaysia did not succumb to communism....fascinating and I now regret that hubby put the books into his luggage to spare me the trouble. Yes, he's left on an early flight back to work and my son came by also before flying up to his job. (The party IS indeed over.)

The groom is trying to figure out what he wants to eat at an Indian restaurant.

Then to the fun part, the decadent part of the shopping: I actually bought the Sisley face mask and a travel size assortment of Sisley products. After seeing the Sisley booth in duty free in Singapore out of the corner of my eye as I was whisked from one terminal to another, Sisley has been haunting me! One thing to check off my list!


And, finally, though we have our own mini Sephora, which I've never been to, there was a real one on our way out of the tower and at one point I thought I'd died and gone to heaven! I especially loved the lay-out of the store: so organized and not at all overwhelming but fun.


So, it's been a bit of an action-packed eight days, so different from my usual style! I'm sure bits and pieces of the trip will find their way into my posts for a while, especially as I have access to my pictures and am sent even more pictures from the young couple and as I think about what I saw and learned. But for now, I need a few days of rest as I wait for this body of mine to gather up enough energy for the trip home, back to my bed!

The fruit platter was always full, no matter what you ordered.

Does anyone know what the leaves with the golden cherry tomato look-alike is?