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.
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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!

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?

Fighting dehydrated skin (especially on long-haul flights)...

I've been scouring the Internet in order to find or put together some magical formula as to what I should pack for my trip to Kuala Lumpur (KL) and when I forget that I'm trying to find beauty tips in order to do a long-haul flight, it's actually been a lot of fun.  I mean, I can read beauty "stuff" all day long (and often do!).  It's only when I remember that I'm not looking for theoretical information, that I actually have a mission to accomplish, that my stomach goes all topsy turvy, with more than a little bit of anxiety thrown in.

And with this trip, I have the usual worries with an added factor, which is, actually, NOT so minor: it's the first time I'll be flying alone in at least 15 years and I'll have to be wheel chaired from one airline to another - twice! - going there as well as coming back - and in huge airports.  To make things a bit more disconcerting, I feel that I'm at a huge disadvantage not knowing the languages involved.  No, I don't speak Italian, Spanish, German, nor even Greek for that matter, but Asian languages are a whole different ball game for me.  I know that English is spoken "everywhere" there are tourists, but it's still an unsettling feeling - though I'm certainly trying to turn it into an adventure.

At any rate, I thought I'd pass on a few of the tidbits I've run into that I have found interesting, for one reason or another:

• Dry skin vs. Dehydrated skin:

I've felt for the longest time that I didn't really have dry skin, but I've never really been able to put my finger on what else it could be when, in the grand scheme of things, I have so many bigger problems: like trying to figure out my whole sleep mess.  But I've always felt awkward saying that I have "dry skin."  Even saying "combination skin" somehow made me feel like an impostor.  I wasn't sure what I had, though I certainly knew I had sensitive skin of some sort, but what else?  Then after a hospitalization a few years ago - with the Intensive Care Unit thrown in - my skin really turned on me and with my whole compartment syndrome hospitalization six months ago... that didn't exactly help matters either.

This wasn't flabby skin (though heaven knows I have more than I'd like of that) but skin that wasn't young and plump any longer.  To complicate matters, I happen to be one of those people who really, really does not like cream on my skin, other than on my face.  I've tried just about everything out there (or so it often seems to me) and have pretty much hated everything I've tried, save my Dove soap (OK! OK! "beauty bar"!  Sheesh!) and the LaMer Hand Treatment, which I use on any dry parts.  However, in the last few years, even my Dove and LaMer have not been of much help.  Out of desperation I've turned to other products, enduring them in hopes of their helping turn things around a bit, with not much luck.

• Hyaluronic acid:

I've been hearing about hyaluronic acid for a while now but somehow it never really clicked that I should give it a try, especially since it is great for dehydrated skin.  (I suppose because of my ongoing war with my pores!  How many battles can be fought at one time?)

But evidently hyaluronic acid, which is a naturally occurring substance in our body fluids, found in joints, for example - could be the answer, or a step in the right direction.  As we age we a) produce less and less of it and b) it gets broken down faster.  I've learned a ton of facts about it in the last few days, but the key factor here is that it locks in moisture.  If I go into the science of it all, we'll be here all night, so at this point I'll just say that I'm thrilled that I have made this discovery, especially since cabin air is so horribly drying.  I'd like to NOT look like I could easily pass for King Tutankhamen's only slightly younger sister when I get off the plane in KL.

• Clarins HydraQuench Intensive Serum Bi-phase:

Heavy on hyaluronic acid, I'm going to give this HydraQench serum a try, as well as the cream mask.

• Spritzing my face:

In my fight to stay as hydrated as possible, I'll hopefully be able to spritz my face with my Avene "water in a can" and/or my Omorovicza facial mist.  

The strange thing about this whole water problem is that in order to keep my blood pressure high enough, I need to eat a lot of salt.  Given how thirsty we who have CFIDS/ME/fibro are to begin with, the salt further complicates the whole dehydration issue.  Agh!!!!

At any rate, these are the newest weapons in the arsenal to fight against my crepe-y skin and thirsty skin issues. Hopefully, they'll work out nicely and not prove hubby right when he said, "shouldn't you have tested those things out before-hand?" followed by "what if you have an allergy to them?" 

Oh how I hate logic at times!  I'm trying to ignore him, though I'm giving them a try-out even as he goes off to bed, the smug little...killjoy. ;)

Priorities in family, health and beauty...

My "little boy" is getting married!

I seem to keep putting off the completion of my eyebrow miniseries but really, it ended up having too many loose ends for me to publish it just yet.  I am, however, surprised that these posts appear to have a high readership and I'd like to thank you all.  However, there's so much I have for the subsequent eyebrow post(s) that I'm trying to cut it back a bit and chop it into smaller posts.  And, of course, what further complicates getting the series done - with no other posts breaking up the series - is that I keep getting sidetracked by other CFIDS/ME/fibro issues...or just life!


On Saturday I'm planning to get my hair done again and was (selfishly) disappointed that Lan's away.  I'm concerned that the new person won't be able to do my brows and lashes successfully and of all times to not get the person who knows you???  You see - and oh how much I'm afraid of jinxing myself (KNOCK ON WOOD!) - but I'm about to go on a HUGE trip, something I would never in a million years have imagined doing at this point in my life. 

There's been a hurt and sadness deeply rooted in the last few years.  I, at some point, really and truly suddenly realized, more or less out of the blue, that traveling will no longer be in the cards for me: that I'd never get to climb to the top of the Sydney Harbour Bridge, that I'd never get to Alice Springs, nor would I be visiting St. Petersburg, or my cousins, for that matter, when the 2014 Olympics in Sochi start, so close to where my cousins live.  To show you how badly I do when traveling: hubby and I decided to do the simplest of vacations a few years back at a resort in Arizona that even had horse-back riding.  Well, it was a disastrous seven days, with me as sick as the proverbial dog, with one health problem after another: I broke out in angry red hives, I broke a tooth biting into my room service hamburger, and I've long ago suppressed all the other things that went wrong.


And yet, just as I had, in the last few weeks, resigned myself to the fact that there wouldn't be any more "exotic" vacations/trips for me, I was told by my middle child that he's getting married and soon AND in Kuala Lumpur.  And though he never expected me to be able to be there, worried about my health, I, in turn, couldn't imagine NOT being there.  So, in a frenzy, hubby spent a few days trying to locate my passport (remodeling strikes again!) as I tried to figure out which route to take, the dates involved, which airline(s) to use, how to swing it all financially. Finally, after a couple of days and nights of no sleep (what else is new, right?) my brain finally gave in, turned off the malfunctioning sleep switch and I was able to take a nap.  When I woke up, hubby had found the missing passport (it was exactly where I told him it would be!) and had booked a flight for me for my trip.  We both knew that every bit of damage done to me in this latest adventure of mine will well be worth it.  Besides, I would never be able to live with myself if I didn't do this.


And this SHOULD be quite interesting.  I'm traveling alone, since there are a few serious family crises/issues that need addressing (Murphy's Law!) plus hubby is not able to leave work at the moment.  Consequently, I'll have to rely on the airport people to meet me at each gate with a wheelchair and to get me to the connecting flight in time (with no time at duty-free shopping?  Just kill me right now!).  Hubby bought me business class tickets because we know that this will be a major shock to my system (I'll be running on adrenaline, which has not kicked in yet for the packing...). I'm just so weak and lethargic, my voice a croak, my muscles aching and so forth, but hopefully business class will make things go a bit more smoothly.


In general, CFIDS'ers shouldn't even be flying much at all and I have long wanted to post on this topic alone, but I'm still doing research.  Going by past experiences I know that this trip will keep me in bed for a couple of years since each time I've done this sort of insane thing, I've returned home with some new sort of nasty "thing" that no one could have foreseen and run down beyond comprehension.  But I don't really mind: it's always wonderful to spend time with my children, no matter where they may be in the world! (That sounds as sappy as an answer in a beauty contest!  Sorry!)


So, my boy is getting married and I cannot imagine not being there!  (I just had to repeat that because I'm still trying to get used to the idea!)


In order to get my engines revved up, yesterday and today I've been reading as much as possible on making travel easier, as well as "stalking" YouTube.  I'm following advice from Ruth the model, Sali Hughes of The Guardian, makeup artist Lisa Eldridge, as well as others: they are now my guides, my inspiration in all things packing and beauty.  And perhaps the best of their tips: how to do a great DIY beauty routine on long-haul flights!   Considering I have twelve time zones to get through, I have a feeling I'll be able to do several treatments.  But packing?  That is going to be a challenge since I freely admit to the universe: I am an awful packer.  My son immediately notified me that I can buy anything and everything I want/need in KL...having traveled with me too often and knowing just how much luggage I can lug around, often borrowing parts of others' suitcases. (Sadly, true!)


And there are so many things to take care of, as a person with a chronic illness.  Although I have an almost pathological fear of flying, for the first time ever, I'm actually looking forward to the flying part of the trip because I look forward to the DIY beauty routines.  I may even get adventurous and fool around with makeup, who knows? (Joke at my expense!)  Though I am a bookworm, I've never been able to read on a plane, not even the truly awful magazines my daughter seems to buy in bulk for travel, which take very few brain cells to comprehend. I feel as if I'm in a straitjacket when flying so I have high hopes for the DIY spa experience to make the time go by faster.  And I'm now carefully selecting/packing/agonizing over what should be in my carry-on (all meds, of course, but which skincare products, which cosmetics?), what is the proper size of the check-in bag and its weight, questions like "do I actually lock my suitcases since they need to be inspected along the way," yet it's scary not to lock them?  I'm also trying to figure out exactly what the restrictions for carry-ons in general are all about.  And I must not forget to pick up the letter from my doctor explaining to customs which medications I'm on and why, in order to not get thrown into a prison, never to be seen again. I also have to figure out how to give myself the HGH shots.  Eek!  I've never done the whole process myself: the few times I did the injections, the needles were already loaded. Plus I need to figure out how to carry my meds refrigerated for such a long time and distance. Finally, I have to make sure that I have enough meds to get me through the time away: some prescriptions will most likely end on a day I'm away, so we need to work with those concerned in order to insure that I have the doses needed.


So, getting back to hair, lashes and brows.  Although I don't have an appointment with Lan, I do have an appointment with someone else to do my brows and lashes.... And I truly need this: a) to deflect from my age spots (hyperpigmentation)  and b) I don't know how much makeup I'll be able to handle in KL - it must be murder wearing full warpaint in an area where the temps hover around the 100 degrees mark (we ARE at the equator, after all) with very high humidity to boot. I most certainly need those brows and lashes darkened in order to not scare any child unfortunate enough to cross my path.


I have a week before I'm off, so if anyone has any brilliant ideas to make this trip safer, easier, even feasible (!) please let me know.  The airlines change policies so often that it's hard to keep up. I worry about the water factor. I used to bring an entire carry-on with water and when I finished that, I'd then start asking the flight attendant for water. I actually had one refuse me water, saying I'd had two people's quotas!   So, there's a concern for you!  CFIDS/ME and water, after all, go hand in hand!


Another part of me fears a repeat of what happened at my daughter's college graduation.  Just as the class was coming in, accompanied by absolutely beautiful and stirring music -  I was being carried out because I kept sliding off the chair and "semi-passing out" (the HGH approval was moving very slowly though "the systems," the "t's" not yet crossed the "i" not yet dotted, so I was basically dying at that point and had to be hospitalized as soon as we got home).  I remember thinking the whole time, "at least it's just a graduation ceremony and not her wedding!"


Because of this fear, I'm arriving in Kuala Lumpur almost a week ahead of the wedding so that my long-haul plane ride will have been forgotten and my witty, charming self will shine through! ;)


If I can figure out how to blog from KL, I hope to give tips on traveling, or keep you up on events as they happen.  And I cannot believe I'll actually be in Communist China for layovers...in Shanghai and Beijing.  How I'd love to run out of the airport building and just take in the atmosphere for an hour or so, remembering very well when Nixon and Kissinger made the monumental steps of "opening" China.

Even when you're extremely sick with whatever kind of illness, it's difficult to give up those activities that you loved and learned as a child and have developed marvelous muscle memory for.  I love adventure, I love learning, I love people watching and I love my family.  It's difficult to come to terms with the fact that your can't do all the things you love any longer, just because of a lousy illness, or if doing them, doing them only in "heavy" moderation.  


But you know what?  Sometimes it just gets to be too much, all this hyper-vigilance over ourselves.  It gets to be a pain having to factor in what was eaten, what was said, monitoring anxiety levels, predicting pain levels, noticing every bit of minutiae which, as it so often turns out, is NOT minutiae at all but can often be the most important part/factor of your life, the one worth living for.  Because as I wrote in my previous post, I don't want to live in a cage, even if the cage is gilded.  To me, if the event is humongous enough and if it's well worth the price, I'll gladly pay later for all I've gone through.  And for me, my son's wedding is definitely worth the price, even halfway around the world.


Help???!!??


P.S.  I went back and made a few changes to the original post.  My brain was definitely way too fogged up this morning when I typed it out.  Apologies to all.



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I DO treasure that which remains behind....

...That though the radiance which was once so bright 
Be now for ever taken from my sight, 
  Though nothing can bring back the hour 
Of splendour in the grass, of glory in the flower;  
  We will grieve not, rather find 
  Strength in what remains behind....
     ~William Wordsworth  (from "Ode to Intimations of Immortality")

It may seem absolutely ridiculous to some out there that a person who is supposedly so sick that she's bed ridden and, for huge stretches of times, is in bed 24/7, who can no longer cook for herself, who can't eat sitting up, who has a hard time talking/dealing with more than one person in the room at a time thanks to sensory overload, should be so interested in such trivial subjects as eyebrows. When I wrote part 1 of the miniseries, an hour after I hit the "publish" button, I was so embarrassed, thinking, "Good grief [actually my real words have been cleaned up], if someone stumbled onto this site right now, they'd wonder how and why someone so supposedly ill would go on and on about such trivia?"  If she's THAT sick, the thinking would probably go, shouldn't she somehow be out there participating in the name change of this awful illness?  Shouldn't she be using her time, and the energy she does have, more profitably on patient advocacy...or any number of other lofty issues/problems?

My answer is that I'm tired of living in that world of only going into the noblest of discussions and activity.  I've now lived with an illness that has so devastated me and robbed me of the "core Irene" that I am an Irene my husband never really knew, and my children don't remember, the more energetic, albeit already sick, mom.  It breaks my heart when I find out that my oldest often tells the stories to the youngest (and they are only three years apart in age) of what mom was like when she wasn't AS sick as I've been for the past twenty five years of the thirty seven years I've had this DD.

Just for a while, I'd like to live in a world not dominated, every single moment, by CFIDS/ME/fibro and its many parasitic hangers-on, as in severe insomnia, pain, light/sound/smell sensitivity, falls, swollen lymph nodes, migraines, tinnitus, BP craziness, neuropathy, IBS, the daily shots...the list goes on and on.

Furthermore, I think that for most of us, we generally DO feel better around beauty.

The other day, I happened to test out a new nail polish.  Given my limitations with "the Claw," I decided I'd paint only my left hand's fingernails.  After all, I just wanted to get an idea of how the color looked on me, the way it goes on, would there be a streaking problem.... I told myself (yes, I often talk to myself and hubby is always saying, "What? What?" not, altogether sounding much different than Ozzie Osborne - oh sweetie, you know I love you!) that I needn't give myself a  perfect manicure. I knew that trying the perfect manicure at that time would only lead to frustration because my left hand is still a huge problem, now, six months post-surgery. I told myself to just slap it on and then take it off after a day or so, and that later, when finally in the mood (come on!  It COULD happen!) I would then go the "perfect" manicure route.

And so last night as I was actually reading a book (yes!  Hallelujah!) and holding my Kindle with my right hand but clicking those pages forward with the left while lying on my customary right side, I suddenly noticed how pretty the nail color was, how perfect it looked on my hand and that this color has the potential of being a "really good" buy.  It put me in a great mood for a few moments, much better than a host of psychiatrists, psychologists, or life guidance coaches could ever hope to achieve, including my GP, my hubby and even my kids.  It's because I saw something pretty, with the same reaction that I feel WHENEVER I see something pretty...be it a daffodil, a vacuumed, dusted and sheet-changed bed and bedroom (MINE, of course!) or a pair of cool boots (though we won't go THERE for a while!)

I know it's superficial to to be hung up on one's looks too much.  And despite all appearances, I really am not crazily so.  Yes, I may be a bit of a beauty product junkie, but we all need to have a side of us that's not always focusing on the bad, nor problem-solving the world, nor the awfulness of this illness and what phase we're in with this DD.  A long time ago, decades actually, I wrote that it's not right to compare the CFIDS/ME/fibro suffering to any other suffering because ALL SUFFERING is suffering and it all hurts.  What we need to do is find a way to live with it, to minimize it.

I've found that in my life, I'm always looking for ways of improving my condition.  If I can, for example, eliminate carbs from my diet and see a .05% improvement, then another .15% improvement from massage therapy, then you know what? - I'm going for it!  It's all a matter of good old arithmetic and common sense.  If you add all the tiny bits of help - this, that and the other - soon you have an improvement of 5%.  And that 5% can make you or break you sometimes. Add more little improvements, and soon you're doing 7% better, add another "successful" med... I think you can see where I'm going.

I suppose this is where I get the most frustrated and upset and even angry: when I'm told by ANYONE, be it dietitians, doctors, "friends," family member outside of the immediate family circle, that I should try this and that.  I meaning I've had this illness for thirty seven (expletive!) years.  How stupid do they think I am when I'm told I should do this and that, by some very rigid people who have, when all is said and done, absolutely no idea what is happening to me internally.  They may see some symptoms, but not all.  My close ones, the immediate family, however, know when I've gotten too sick, be it from the blue to colorless lips, the slur that appears in my speech, the balance problems, the difficulty I have finding a word, the sweat covering my face and scalp and then the rest of me, the dry mouth which makes my teeth and tongue stick to my mouth so it's almost impossible to talk, the croaking sound that comes out when I'm so exhausted or under such pressure that my throat constricts.

Case in point and wow, this is a huge bugaboo of mine: exercise and pacing do NOT work, for ME!!!!  (Boy!  That felt good to say!)  Normally I do not advocate violence but sometimes I just want to smack someone "upside the head" when I hear the THEORY of exercise and pacing.  Been there, done that, long before many of those propagating this advice were even born!  What's more, I've come up with coping mechanisms which I thought were what anyone would give a try, only to find out that no, they're quite unique.  My daughter calls it being an actress and says I should get an Oscar.  I don't mean to employ dozens of tricks that make me appear "normal" to most...it just happens.  It's been evolving for decades and I can't even begin to explain them to you, just as I could never begin to explain how it is that I breath, I eat...it just IS, it just happens.

And understand, that I'm in no way saying anything negative which anyone here reading this blog has offered in the way of help.  I've started on my evening primrose oil, made as a suggestion by my old HS friend reading my blog and I think I see an improvement, though I can't yet be sure because I only got to it a week or so after the suggestion was made and then I forget half the time.  I've called my doctors and questioned the histamine angle only to be told that yes, that's been ruled out and often.  These observations and comments are made by those who don't just blithely say, "honey, if you'd just get your Be-Hind out of bed, you'd be healed!"  I feel no judgement on their part, as I've felt no judgement on any one's part who has offered suggestions here.

Besides, presumably, anyone giving me a suggestion here on this blog has actually read enough of some of my most deepest thoughts regarding CFIDS/ME/fibro and has read enough of my history to at least make a suggestion that makes sense.  It's the out-of-nowhere suggestions that are depressing and frustrating.  It's the rigid suggestions, like the ones that claim anyone and everyone who has CFIDS/ME/fibro will be helped by exercise, because it just isn't so with me...and I know it's not so for a lot of people out there.  I get so angry sometimes by that old chestnut of "You must do this," "you can't do that."  So many of us already experience so much guilt and on so many levels: do we really need more?  And God save us from those who think that if we tried things with more effort, we'd be magically cured.  I don't even want to go there!!!

I mourn the loss of the old Irene.  I hate all the things that have been taken away from me, a bit at a time, like baking bread a few times a week, gardening every day, visiting with friends and so on.  But I still have a lot of good things happening to me and I try to keep those things in mind.

And yes, I want to be more than this illness.  I hate that illness defines me in so many ways.  Sometimes, I admit, I do things I probably should never attempt, but really, how much can one be caged, even in a gilded one?

And so, knowing that beauty helps me cope - beauty of all sorts: the beauty of a wonderfully phrased paragraph in a book I happen to be reading, the beauty of flowers in bloom, the beauty of the hills around the town I live in, the beauty of a clean and organized, dirt/dust-free room, the beauty of the engineering of a particular product...well, I'm going to go on with trying to appreciate those things as long as I can, because for me, it adds to the quality of my life.  This seeing of beauty in what remains behind makes me usually realize that life is good and pursuing the good things in life is often what keeps life worth living.

Friday night beauty pampering...

Nothing like a good soak on a a Friday night...or do I need a life?

Finally, the week is over and about half of the population will be celebrating the end of the week by going out, while the other half lies on a coach and is exhausted, happy to finally have a break.  For those of us in the US, it's a three-day weekend, Monday being Memorial Day when we remember and honor those veterans who died in wars fighting for our freedom and in protecting our freedom.  We salute them.

At the same time, we plan our barbeques, picnics and/or hit the stores for the Memorial Day Sales!

And then there's "us," the ones with CFIDS/ME/fibro, who feel weary and exhausted (what an understatement... so sorry!) and pain so strong and killing that it feels as if it can send you straight through the roof.   For "us," I'm going to suggest a few products that some call the "ultimate" in end-of-the-week relaxation and perhaps a bit of a reward for getting through the week, the good old-fashioned bath experience of lying back, relaxing and letting your pains and woes float away - OK, only in a movie, but even in real life, the bath, with something special added can help, especially if you can talk someone into running it for you and all you need to do is step in....

People with CFIDS/ME/fibro, rejoice! Just a couple of weeks ago, I was finally able to christen my new bathtub with a truly indulging treat!  I christened it with:

• Elemis' "Skin Nourishing Milk Bath."  What decadence.  I even indulged myself more by adding three capfulls, instead of two, because...well, I was spoiling myself!  Because of remodeling I'd not been able to take a bath in a year and my skin has been so dehydrated that the words "prune" and "raisin" come to mind.  Hospital stays and almost dying, I suppose, are not kind to the skin.  So, I'm working hard on plumping up the skin, all the time trying to lose weight, of course.  Crazy, no?  Your skin is softened and washing it with a nice body wash leaves it feeling indulged. Anyway, I'm simply in love with the milk bath - insanely in love - and will reorder as soon as my finances look like they can handle it.

The next time I plan to melt away the aches and pains of the day, I'm going to add a real favorite:

• Ahava's "Juniper Mineral Bath Salts."  I've used these in the past, the Dead Sea Salts are heavenly and really do help melt away quite a bit of the aches and pains going on in your body.  I tend to think that the magnesium in the salts have a lot to do with the success of alleviating pain.  I'm not saying it's the answer but I find that they give me a bit of a break.  The smell is that of most therapeutic salts.  This is not a luxury item in the sense of the milk bath (which reminds me of Cleopatra) but the results are so amazing, the skin so soft. And I do really love the sensation of floating in the water.

And while I was in the tub the last time, I tested out my:Liz Earle "Energizing Body Scrub."  First let me just say that there is nothing energizing at all in this scrub for this CFIDS'er, so I'm not sure you need to fear that it's going to energize you just as you want to start working on falling asleep.  The ingredients include  Damask Rose Flower Water (and I love anything of quality that smells of roses, very cliche of me, but true), Sweet Orange Oil (clean smell and feel), 8 essential oils (unnamed) and Vitamin E, all with ground-up olive stones.  I'm not sure that the ground olive stones were a selling point with me other than that they ARE natural, and the Rose and Orange together are bliss.  My shoulders and upper arms were especially rewarded with this scrub and it's a real keeper.  In fact, thinking ahead (really, Irene?) this would be a nice Christmas present...or birthday gift.

And finally, just because my eyes have been giving me such a hard time lately:

• Liz Earle's "Eyebright Soothing Eye Lotion."  I pour a bit onto two cotton pads and let them soak onto/into my eyes for about 15 minutes.  Eye drop do me no good: I contend that it's because the eyeball itself is so hard, perhaps from dehydration, perhaps from inflammation, I have no idea other than it's as about as porous as a marble.  These soaked pads are the best relief I've had for my eyes. I'm not saying this is the answer, but again, I'll take relief where I can get it.

I hope everyone has a really wonderful long weekend, that everyone stays safe and that everyone feels good.  Till next time! 

Self-tanning and bronzers à la CFIDS/ME/fibro-style...

Some of my self-tanning supplies for this year.

Now that we're explored the world of exfoliation, we're ready for that all-important "sun look."  I'm not sure about you, but since my skin is chicken-skin white, self-tanners really are a life-saver.   Normally, I don't do "the whole bit," but since this is my year of "making myself look human," I've decided that I really am going to go the self-tanner route and streaks be darned.  You see, I'm such a perfectionist that I can take all day just applying self-tanners. Granted, most of the day is spent trying to get my energy up to do it - and the rest of the day is taken up with giving myself a pep talk that I don't really need to do a perfect job.  But this year, I've told myself, I'm just going for it.  


Except there's been a bit of a kink in the system, just as it's started.  I put on two of the tanners I've been excited about and you'll hear the results in a moment.  Two or three days later when I was ready to reapply the self-tanners was the day that I'd had those unfortunate baby hives and when I went to take a bath in order to exfoliate the skin, I found that those pesky little hives had left the front of one leg abraded!  "Foiled again!" as Popeye might have said.  


So, yesterday was to be my day to do the whole exfoliation experience followed by self-tanners.  I'd written up (yesterday's) post and decided I needed to take a picture.  Everything was finally arranged downstairs in the new bathroom, pictures taken, but I wanted to take a few more with the window shutters open and as I stepped back out of the bathtub from adjusting the shutters, I fell.  Badly. I even shattered a tray that was standing outside the tub to bits, one I didn't think was even breakable - I must say I'm most talented!  I'm not quite sure what happened, although I do remember thinking, "NOT THE FACE! NOT THE FACE!" as I came crashing down and was rather badly banged up. The face is fine!...the rest of me, not so much.  I've become a bit accident-prone lately, and I don't like it!  Usually, I'm as agile as a monkey.  I have no idea what is happening to me.


All of which is to say that the products were tested only once this year and I'll have to rely on the experiences of last year as well.  I'll have to wait at least another week or two before I get to work on my "tan," but rest assured, what follows will be what I'll be using since it all is basically the same, year in and year out, with one notable exception.  


I've found it a good policy to basically go with Clarins since it appears to be fine with my skin and, really, I shouldn't do too much experimentation any longer since I've had a few disastrous results in the past. Often, I find, "don't fix it if it ain't broke!" is indeed the smart policy.  So, off we go with:

• Clarins "Delectable Self-Tanning Mousse with Mirabelle Oil."  I used this on my legs and they came out looking rather nicely.  

If anyone recalls, due to a flu I had a few years ago which lasted two years (yes, this is not a mistake, I had a whole full blown-out flu for two years: amazing what this CFIDS/ME/fibro can do to your system!) and was left with mottled legs as a souvenir.  Given that my legs have been one of my vanity points (i.e., one of the few things that I actually liked about my body - oh come on, we American women ALL hate our bodies!  It must happen in the hospital when we're born and then just gets worse over the years) I thought at first that the tanner would sort of disguise the "mottle-ness" or "mottled mess."  However, after the whole arm/hand thing and with my muscle tissue coming out in that bag of urine in the hospital as I lay dying (sorry, Billy Faulkner, for using your words), I now have these veins that are not going back into the body and I'm not quite sure how I'm going to get rid of them. Horseback riding lessons are one idea (my GP just gave me a huge lecture that it is time and, man, how I do not want to do it, at this point, but only because of timing considerations!!!) and I have an awful feeling that for many reasons that it's simply not going to happen. 

Anyway, I thought the self-tanners may help disguise...well, that with a lot of very long skirts?!  Anyone with ideas, please figure out my funky comments section and write in as I'm pretty desperate.

But, yes, from one application of the Clarins Mousse, I came out with a very nice tan on my legs that I could see would help me with my "disguise" plans.  

In previous years, I've also tried the following Clarins self-tanners and intend to do so again this year:

• Clarins "Self Tanning Instant Gel"
• Clarins "Self Tanning Milk with Sun Protection"

Both have done nice jobs and given that I already have them in stock, I'll be using them until I run out and then will most likely buy again.

But we have a surprise!

• Omorovicza's "Glam Glow self-tanner"....5 thumbs up!

I'd received a full-sized sample of Omorovizca's "Glam Glow self-tanner" when I bought one of their sample bags - when it was on sale a few weeks ago.  I was bold enough to ask if they had a substitute that I could have instead of the self-tanner but the substitute was so unattractive compared to the self-tanner (OK, it was a $20 value compared to a whopping $89 value for the self-tanner!  And OK, I was momentarily dizzied by the dollar in this instance - but I also knew I'd have a better chance of using the self-tanner than the substitute, which I guarantee you I would never have used!).  As soon as it came in I used it on my arms (we have 30 inches of scarring to somehow camouflage) and I loved the color and smell.  It just looked like my arms, but darker.  Best, it made my very white (read: untoned, flabby) arms, that is, from shoulder to shoulder, including the collar bone and décolleté SHINE! Even my daughter, who'd stopped by the house, remarked on it.  I GLOWED!   And it was nice.  I'm not sure that it will be "strong" enough for my legs, though I know I'll give the legs a layer of it after I've built up some color on them, thanks to the Clarins, plus I can't wait to see what'll happen to my legs with a bit of glow.  I just hope it's not neon veins!  BTW: only the best of ingredients are used.  Omorovicza tries to keep it as healthy and natural as possible, albeit remembering that they do want to give you a tan! 

Moving on, every summer I use the following periodically:

• Jergens Natural Glow Revitalizing Daily Moisturizer, Fair to Medium Skin
• Jergens Natureal Glow Firming Daily Moisturizer, Fair to Medium Skin

Now these are really and truly very nice products, but you need to apply them every day and there is nothing that I do every day, other than eat.  NOTHING!   I have CFIDS/ME/fibro, and that's the beginning of  my problems, so nothing else is a given.  Let's face it, even breathing every day if often difficult.  So, I've applied the Jergens now and then, but really, it's a lost cause for me and I'm not even sure I didn't throw them out when we were decluttering.  Let me tell you, I had quite the collection as each new kind of Jergens gradual tanner came out, and once my ever-optimistic middle child bought me the medium-dark skin one.  Sad.  He's just so darned optimistic, that dear child!

• Bare Essentuals "Faux Tan"  

Now, hubby was sent out to buy me a self-tanner last year, with no specific instructions, I'm the first to admit, at least not instructions specific enough for him.  He came home with the aforementioned "Faux Tan" and I wanted to cry.  I'd already had a bad experience with it a few years back. (Daughter to mom/me: "WHAT DID YOU DO TO YOURSELF????")  After looking at the happiness on hubby's face and hearing everything that the salesclerk told him (VERBATIM!), I tried the stuff on my legs again (on the principle that no one would see the disaster) and I still do NOT understand how this mess works!  I've read up on it, watched people on YouTube and people actually swear by it.  The saleswoman must have been telling the truth when she said she couldn't keep it in stock but I've had no luck with it. 

I HAVE read that you can now buy a brush to apply it with.  Are they insane?   Why would I want to fork out 50 bucks for a brush to use a self-tanner that MIGHT work if I do it ABSOLUTELY correctly and am, by the way, a Snookie-like pro with self-tanners, which I'm not?  And then the brush has to be washed, I would imagine?  I love brushes but, really, in this instance, my life is already difficult enough, so I'm not even going there...unless, I get very desperate about my legs....

But then I'll use the

• St. Tropez's "Tan Optimizer Applicator Mitt"  

Right!  OK.  I'd like to think that I'll use it, especially since I already own one.  I hate orange hands perhaps even more than streaks, so washing my hands is usually a huge ordeal. I do one leg and wash hands thoroughly, including using the all important nail brush.  After a while (at least 15-30 minutes because I'm now exhausted and need a rest) I do the other leg, wash hands and rest.  Same goes with the arms, shoulders, back of neck, etc.  Wash hands and rest.  Actually, you've/I've earned the rest by now!  Congratulations!

• St. Tropez's "Tan Optimiser"  ("Tan Removal")

This is what is giving me the confidence this year to go on and risk the streaks, orange hands and mishaps.  I've used this a bit and haven't had any problems with my hands.  Good!   A lot of anxiety not needed, a definite plus in my book.

Now, I do not tan my face.  That is a sacred area.  (See above account of accident last night to remember just how sacred the face is!)  

But thanks to Ruth, The Model, I've discovered: 

• Chanel's "Soleil Tan," a cream bronzer that you apply with your fingers, or with a brush if you really want a mess and have the energy to clean brushes.  I like the control I get with my fingers.  It is heaven!   Yes, this is just a cosmetic, which is all I'll use on my face, thank you very much!

I've found that bronzers can be tricky.  They can be muddy, they can be orange.  They can "over-stick" if your face is over-moisturized, they can do heaven-only-knows-what if your face is under-moisturized.  I own Guerlain and many other "best of" bronzers.  My daughter always thinks she's my mother and will start smudging off some of the bronzer I apply (I guess it's not the right amount or not in the right place to please the ever-critical "children.")

However, the Chanel goes on beautifully and because it melts into your skin - it is a cream - it works like a dream. It blends so well that it's almost mistake proof. Critical daughter had nothing to criticize the few times I've worn it!  I get no awful facial reaction to it, my face actually seems to LIKE whatever is in there.  So, that is it for bronzers for me.  

Oh, I'm sure I'll fool around with a few other products - it's my nature.  And I do have a few products lying around already that I really should give a try.  But really, I'm happy (or not happy in one instance) with the products I've listed and so there you have it. 

And finally, just to keep everyone safe, the best sunscreen ever:

•  La Mer's "The SPF 30 Protecting Fluid," bar none!

When I visited my son in Australia, I had at least five different sunblocks to choose from/foisted upon me, that is, by various members of my family as they all feared for me because they all tan while I only burn - and Townsville is in the tropics. (We also went during the height of their summer so we could spend time with said son!) I hated every single one of those sunscreens as much in the topics as I did anywhere else, not surprisingly.  

But I do remember being wonderfully shocked by the feel of the La Mer, especially since I was in the midst of trying them out one by one, constantly, no rhyme nor reason other than someone was always yelling, "MOOOOMMMM!!!!," horrified that I'd expire from melanoma right there in front of them.  After about thirty minutes by the pool one day (a record, trust me!) I fell in love with the La Mer (who knew?  I'd been using it for years whenever I got a nice lecture from Sylvia). For the rest of our time in Oz, I kept reapplying the La Mer, and was able to come home as pale as I left. To tell you the truth, because it is so pricey, I use it only on my face, shoulders, décolleté and arms.  I figure the rest of the body can use the less expensive sunblocks and since my legs aren't funny about having anything on them, it's basically a non-issue. Besides, if I did burn those legs, I'd kind of like it (again: remember, I'm a product of the '70's!)

And if you're in the sun: please remember to wear a hat!  The sun really does have a tendency to wipe "us" out, those with CFIDS/ME/fibro, and a hat with a wide brim is hard to beat.

If you want to be a bronze goddess this summer, these products may work for you.  Or, if like me, you just want to look a bit healthier, this just might be the ticket for you too.  Whatever, enjoy!   And if you can sneak a few minutes of sun for your Vitamin D without any cover, go for it, as long it's for just a right amount of time - I've heard ten minutes in the gentle morning sun, not the afternoon harsh 3PM sun - and it might be a good idea to carry a timer with you, as it is all too easy to misjudge how long you've been out in the sun. (Personally, I'm really hoping umbrellas in the sun, as in "parasols," come back into style!  Think about it: it's a nice idea, and we would get a bit of sun, just enough for that oh-so-necessary Vitamin D!)

Finally, my GP, who knows me all too well, has put me on Vitamin D capsules to take daily since, for the first time ever, my Vitamin D level has dropped significantly, to an unhealthy number.  Hmmmm...perhaps he doesn't know me as well as he thinks: I have hit my quota as to how many meds I can remember to take and supplements are a whole 'nother ball game in the memory department, one I will also get into at some point!

In the meanwhile: Happy Sunless Sunning! 


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CFIDS sensitive skin: Some of us need to learn the hard way...

My mom is proof positive that eating healthy and exercise really helps you look great even when you're 70.  Here in Kiev in '93.

At times I marvel at my colossal stupidity.  I mean, I've had CFIDS/ME/fibromyalgia and all of the health issues that have resulted from this core illness for 37 years.  And yet, somehow, I'm still in denial and do incredibly dumb things.  


I KNOW I have sensitive skin.  I've even written in this very blog about some of the problems I've had because of this.  I take an anti-histamine every night in order to keep hives at bay.  For Pete's sake!  You'd think by now I'd be a bit more careful about what I put on my skin and what I eat and/or drink.  But I'm constantly doing stupid things. Well, I guess I needed to go too far in order to start back to where I would get some real help.


Yesterday, Saturday afternoon, was quiet around here.  Hubby was exhausted and was taking a long nap.  I'd gone to the dentist on Thursday, a hugely needed event, and had my teeth cleaned - YAY!  The plaque was driving me absolutely bonkers and I had two year's worth because of the whole thing going on with my daughter.  Now we're, of course, catching up with everything.  


BTW: I had some really good news that could be taken as a tip perhaps.  For the first time in my life, I had no cavities.  My dentist (of almost 30 years) was quite surprised and said so: with my dry mouth, it's always a given that there'll be major problems, at the very least, cavities.  Given how long it'd been since my teeth have had any professional attention whatsoever, this was nearly a miraculous happening.  But once the conversation turned to bad backs, I thought to mention that I was able to brush my teeth more frequently because we had remodeled our attic bathroom (the one we've been living in for a year because the "master" bedroom and bath are being remodeled - SCREAM!) and that we'd put in a tall vanity with the sink.  Rather than those low vanities where you have to bend down so far when you wash your face and do your morning or nightly routine, our new vanities are now the height of the ones in a normal kitchen.  What a difference.  Now I have much less back pain so my brain doesn't rebel as much when I try to go brush my teeth.


But on Saturday, I came down with hives and couldn't figure out what the heck was happening. 

We remembered that on Friday I was feeling so cruddy that I called hubby at work and said that I absolutely needed a hero, loaded down with tons of processed meat: salami and ham, especially.  I needed the salt big time.  And I told  him to add a pizza to the whole bit.  If I was going to be "bad" and eat those things that hurt my body (the carbs and combining carbs with proteins/fats, plus processed food in general), I was going to at least enjoy it.


On Saturday, having already messed up my good eating habits, and feeling worse, I added cookies and milk to the whole eating disaster, and asked hubby to defrost some of my piroshki while he was at it.  Piroshki are these wonderful baked rolls with a ground beef filling that also has my beloved dill in it, etc.  (Everything Russian has dill, or sour cream, or better yet, both!)


So hubby and I tried to figure out what in the world had caused these baby hives that were breaking out all over, section by section, like a general sending troops out to occupy new territory a bit at a time.

I remembered that after the dentist we had stopped at the pharmacy nearby.  I had needed some retail therapy. I've never been a believer in "retail therapy," but now that I am getting out even more rarely than before, I just needed to hit a store and look at those items I see on the Internet.  Wow.  The shampoos and products I see on "Project Runway" or even on the occasional commercials I don't manage to skip through - I never thought I'd get excited seeing them in real life!  What has my life come to?


So, as hubby had laid snoring next to me, I'd picked up the bag of what I'd bought two days earlier.  Yes, by the time I got home I was in no shape to even look at what I'd bought, much less appreciate it.  Friday, the day after the dentist's appointment I was in more pain than I've had in a long time, weaker than I've been in a long time.  


Post-exertional malaise anyone?  


As I wondered about the adventures at the dentist, I  remembered a nurse who was a patient at the holistic clinic I went to weekly for an entire year, back in 1997, something I'll get into at some point, I promise.  I'd see Betty there every once in a while when I'd get my weekly chelation or a "nutritional IV," a variation of a "Meyer's cocktail" (one of many therapies I underwent in that clinic each week) and wondered why she was there.  She didn't appear to be sick.  Yes, she was "elderly," but that certainly didn't "mesh" with what we had going on at the clinic.


I got to know Betty and she was fascinating.  She loved talking to me because she'd gone to nursing school in my home town - back in the early 1940's - and would love to hear if certain stores were still in business, what had happened to this place and that.  I loved listening to her because she'd been a nurse during WWll and I was absolutely stunned by the one time she did open up about what she'd seen when she worked at Dachau for just a few days or a week, after the war once the concentration camp was liberated.    


So, Betty was truly one of a kind.  I wondered, why was she there, hooked up to an IV?


Well, Betty was also very spry for her age, very energetic, looked at least 10-15 years younger than her real age. But she had always taken good care of her health, even when we Americans were not doing so.  Like my mom, she exercised every morning as soon as she woke up and took walks, even when people would stop and ask if she (or my mom) needed a ride.  No one walked when I was growing up.


And Betty felt that going to the dentist was an assault on the body, thus the "nutritional."  Wow.  I was really impressed. 


You see, though she never practiced in the US, my mom became a dentist after the war.  When she was in her DP camp (Displaced Persons camp) near Munich, the DP's, along with various international organizations and the Marshall Plan, started schools and my mom was able to continue the education that was stopped because of WWll when Ukraine was invaded by the Germans.  In her camp, where she lived for five years, she was able to get a wonderful education, including dental school.


Mom was always taught that dental work IS an assault on the body and that they should recommend that patients take it easy after any dental work.  In fact, they were also taught that during the woman's "time of the month," she shouldn't have any dental work done, it was just a bit too much.  


I know this sounds very old-fashioned and I know that it even sounds anti-feminist.  But the times I had dental work done on me at "that time of the month," when my mom wasn't aware of the "scheduling," I always came down with a cold or was generally run down.  One day, I famously barfed and passed out in calculus class, two days after the procedure.  Talk about embarrassment?!  And my mom was furious with me when she had to leave work and drive me home, asking me, hadn't she taught me better?


So, yesterday, visions of Betty bounced in my head as I tried to talk myself out of this awfulness I was going through.  No meds were helping, no mind games were doing any good.  And I tried not to think about the couple of dental projects I was scheduled for in the next couple of months.


Lying there, bored to death, I'd opened up the bags from the pharmacy I'd dumped by my bed and started looking at the "treasures" I'd brought home.  "Treasures," I might add, that hubby had warned me about, unfortunately.


I'd already tried the cotton pads.  Hubby had asked me if I REALLY wanted to buy them, since I usually curse the ones he gets me at the drugstore and I try to go with the Shu Uemura (which are almost impossible to find) or my second choice, Sephora's.  Annoying hubby was so right: when I took my makeup off that evening, it took seven of the new cotton pads to wash off the makeup with the micellar water I used, whereas you only need two pads from Sephora, and to add insult to injury, my face reacted to the very rough cotton, becoming very red and irritated. Those pads are definitely going back to the drugstore.


Also, lying in bed, I'd picked up a certain "correcting powder" that I'd seen someone on the Internet recommend, someone I like to follow on YouTube and whose recommendations which I've tried I've had great luck with.  I brushed a bit on my hand, the one with the huge scar, and wanted to see if I could see any change.  The powder in the compact was not bound together very well and it flew everywhere as I picked it up onto the brush.  As I tried to tap off off the excess, it was still flying all over, as well as when I brushed it onto my hand.  Nope, no difference.  I put it further up my arm, past my watch.  No difference, with powder still flying all over, cough, cough.  I was surprised hubby was still snoring away and that the flying powder hadn't woken him.


About 15 minutes later the area I'd bushed with the correcting powder on my hand started burning.  Stupid me, I tried to rub it off.  Of course that's just rubbing whatever was irritating my hand further into the skin.  Finally, I realized I needed to wash it off.


Finally! I fell asleep before I could do more (inadvertent) damage to myself.  But then I kept waking up, scratching. Each time I woke up scratching in yet another place but made myself fall back asleep - I really needed sleep, the bane of my existence.  After about the fifth time I realized that the scratching wasn't going to get any better, only worse.  My neck was affected, the shin of my left leg, and on and on and on it went.  


Hubby gave me Tylenol PM because it has Benadryl in it.  I knew that wasn't going to cut it so I reminded him of my nightly anti-histamine.  I took that and after about an hour the hives started to die down. We started reviewing everything I'd done, trying to figure out what could have caused the hives.  How in the world did whatever it was get into my system - what had caused the hives?


Later last night, very late, I happened upon a blog and the woman was someone I think someone here wrote about earlier, when talking about a muscle biopsy.  I read a few posts, enjoying the blog tremendously and even left a (long, of course!) comment.  I was convinced it was the milk I'd had that caused the hives.


But today, in the light of day, having analyzed everything, I am convinced it is the cheap pharmacy makeup.  My daughter stopped by as I got ready to take a long bath with a soothing milk product (ironically), and also gave me "a look" and said she was sure it was the makeup.  After all, I do get lactose intolerant if I've gone a long time without any milk, but it's never made me break out in hives.  Cheap makeup?  Yes, it's given me hives and other trouble in the past.


So, a little mystery solved.  And I feel stupid.  I already know I cannot handle silicone, or at least a product that has a lot of silicone in it, especially if it's in a cheap product.  And I also know that I can't handle a lot of the ingredients in the less expensive makeup and skincare products.  When I buy La Mer or Chanel, there is a reason. 


And yet, I worry so much about appearing like a spoiled diva that I end up sabotaging myself.  It's about time that I take a reality check and realize that the there is a reason I come back to the higher-end luxury products and they aren't because I'm trying to be a spoiled brat. 


But Betty and the IV nutritionals...why did I bring all of that up?  


Last night hubby and I realized that things have really gone too far.  I'm still recovering from everything my body went through with all those weeks and weeks of staying by my daughter's bedside at the "major medical center." I've not recovered well from the whole hospitalization and surgery thing I had going on back in November/December. I've not recovered from our visit to get my hair done, which was over a month ago.  I've not recovered from the GP's "normal" visit, nor the subsequent visit when I had to get my toe lanced because of the infection that wouldn't go away.  And now my body is trying to recover from the dentist and my stupid application of a cosmetic full of ingredients that don't agree with it.


We had to bring in the big guns.  It was time.


My GP and I have a great relationship.  I've been going to him for at least fifteen years and he remembers how well I did with all the treatments I underwent at the holistic clinic.  His philosophy and I quote: "I don't care if they put cow sh*t on your head.  Whatever they're doing, it's working.  Keep it up." 


One of the things that helped so much were the nutritional IV's.  In fact, there have been athletes in the past who have had CFIDS/ME and been able to play but do nothing else between games.  They've had their doctors on the sidelines pumping simple saline solution during the games.  But when the games were not in play, these athletes have gotten versions of "Myer's Cocktails."  Basically, your physician figures out which vitamins and minerals you are deficient in and puts those nutrients into a saline solution and it usually takes about two hours for the IV to get through your system.


So, last night, we resolved that my "eating right" was no longer enough.  I'd tried for a few months, I'd incorporated vitamins into my routine and I was doing much better on the migraine front but the rest of me...well, not so good. In fact, in some ways, I was doing worse, having become extremely accident-prone, a completely new development.


So, I had a health professional administer a nutritional last night.  We sat in my bedroom and watched a movie ("One For the Money" with Katherine Heigl and Sherri Shephard from Janet Evanovich's series, cute!!!) and by the end of the movie the IV was finished.


Today, I'm still feeling pretty bad, but I can tell that the nutritional has helped and am going to try to get a couple of nutritionals a week for a while, though I have no idea how long that will be. 


However long it is, it is well worth it and I highly recommend investigating this approach if you are in a state where nothing is helping.  


And I recommend that you stay away from some of the cheaper cosmetics too.  


Boy, this illness sucks and costs a bloody fortune! 


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