My bite-sized morsels of helpful beauty hints...

Now listen to Irene's advice!  (In  London, late '80's, "centuries" ago.)

When I first started imagining the possibility of a blog I always thought that one of the first things I’d do was to set aside a day of the week, or distinguish in some way (of course, inevitably with a very cheesy title), the "survivor" tricks and/or tips I've come across that have helped me over these past centuries.  OK.  I exaggerate.  It only feels like centuries.
  
Some of these may seem ridiculous to readers out there but I’m taking the garage sale approach: one person’s junk may be another person’s treasure.   If they work for me, perhaps they'll work for you too.  It would be wonderful to be able have a few exchanges about them in the comments section.  These tips are not exclusive to those with CFIDS, ME/CFS, fibromyalgia, insomnia, migraines, pain, cognitive disorders, etc.  They are and will be, I hope, helpful to anyone who is chronically ill, or to the care-giver of a chronically ill person. 

So with no more further ado, here we go for the first three of what I hope will be a series!

• 1. "Water-in-a-can": This is not an altogether new concept to me but this winter it was a life-saver.  Ages ago, I was gifted a small can of Dior, I believe, and it was wonderful when I needed to fly halfway around the world to Australia, with four plane changes in each direction.  It was wonderful in that dry nasty cabin air.  I bought a couple of the Evian cans of spray much later but proceeded to forget them - of course!  After my surgery and the whole near-death nonsense, plus the flu that wouldn't go away, I wasn't running just my normal two or three fevers a day.  Suddenly my body temperature was jumping around like someone practicing some sort of Joplin-type scales on the piano.  Somehow I happened to remember that I had a couple of cans of aerosol waters and actually found them, a minor miracle.

Oh, I know it's not a good idea for the environment but given how little I do or use, I actually have very little carbon foot-printing, so I thought I was due a few points.

I know people and beauty pro's often scoff at these cans, even laughing at the gullibility of some people.  But let me tell you: a plastic mist bottle filled with water does not have the same effect the water-in-a-can does - I've tried!  The aerosol hits you mildly in the face, like a fine drizzle on a warm spring English morning or a crisp fall day.  The Brits have gorgeous skin.  Do they stand out in the rain (the equivalent of the plastic mist bottle) or do they prefer their "constitutional" when there is a mist in the air?

Furthermore, because the water is in a metal can, it stays rather cool, even when spending weeks and months on your nightstand.

And finally, I think that there really is something to the water from the Alps. When my mom and I were in Germany and Austria I remember saying to her that I could easily move there permanently.  I'd not felt so healthy in...well, I'm not sure that I'd ever felt that great.  And the water was just so delicious that I couldn't stop drinking it.  Evian is the most famous of these "waters-in-a-can," but I really love the Avene.  Btw: I have not tried Vichy's as of yet.  Anyway, this is a huge success in my book, for fevers, wacky body temperature changes and dry eye, mouth, etc.

• 2. Micellar water: specifically, Bioderma Crealine H2o Ultra-mild Non-rinse Face and Eyes Cleanser:

This was a huge find for me thanks to one of my favorite blogs, A Model Recommends, subsequently seen in other places too.  Apparently it's a huge trade secret in the beauty industry and makeup artists use this a LOT, from what I understand, since it seems that almost no one has an adverse reaction to it.  And BTW, you might want to get rid of those wipes for anything but emergencies.  They scratch your skin badly.

The Bioderma is micellar water, supposedly pretty much high tech and various types of this micellar water seem to be popping up everywhere, if the internet is anything to go by. I understand the principle but not well enough to explain what actually occurs.  But I bought a small bottle of it from Amazon and plan to order two large bottles soon, afraid to run out.  According to Sephora, which carries the Caudalie version (also wonderful but a bit more expensive) micellar water "gently, yet thoroughly cleanses and removes makeup. Micellar water captures dirt like tiny "dirt magnets" and sweeps it away without rubbing, while the soothing and hydrating active ingredients work to add radiance."  I've run this by my favorite science go-to person and HE thinks it makes sense and I love it...it's worth a try.

When I don't have the energy to wash my face, which is most days, I now pour a small amount on a cotton pad and my face feels fresh, clean, healthy and soft.  If I've been wearing makeup - wow.  This stuff works!  Even without makeup, my cotton pad comes away surprisingly dirty.  In France, Bioderma is sold in pharmacies and is incredibly inexpensive, as well as popular.  In the end, for us here the States, the Bioderma is a bit less expensive than those wipes.

• 3. Keep a thermometer next to your bed:

With many, our body temps go up and down so frequently that we're never sure if it's the room or us.  I am always putting on and taking off the PJ tops or knit tank-top-like cardigans I use as "bed jackets" because of screwy limbic system problems.  However, if it's the room at fault, then you can fix it!

I'd also suggest that you may try to figure out what temperature your body does best with. My traitor-body seems to want 70 degrees exactly.  Any higher and I'm sweating, short and about as mad and annoyed as a wet hen...not a pretty picture.  If the temperature is below 70, I start to freeze, tremble, shake, my legs get more mottled. Also not a pretty picture. 

This temperature thing sounds as if we are spoiled little prima donnas, but please, don't let that bother you. Keep in mind that other illnesses are affected by temperature, MS being a great example, especially since CFIDS and MS are often interchangeably misdiagnosed.  This, BTW, was a very important point, so you may want to underline it somewhere in your foggy brain for future references. (Smile! Someone understands!)

Remember, you are not crazy.  The ones around you who do not realize how sick you are are the ones who need some sort of help, some training in sensitivity or the implant of a chip which would give them the ability to feel compassion, this later "chip" insight given to me just this past week by a friend. And this, unfortunately, is no laughing matter.

I certainly hope this helps. Good luck and remember, there are those who understand what you're going through...those who suffer the same illnesses you do.  They ARE out there.

But Wasn't Easter LAST Week?

Painting by Boris Kustodiev, with Kulich and Cheese Paskha in the background.

I finally understand why in Victorian and Regency England, which I’ve read about as far back as I can remember, women of means had a day each week which was designating as their "visiting" day.  A "lady" might declare by some reason which day (or days) it was that she would receive visitors, with reasons and rules so complicated that my fibro brain cannot recall all the aspects as to how this was decided, and I do not have the energy to do much research about it, simply to make a few points in this post.  (Sorry! Fibro brain and weary CFIDS body, unfortunately, rule.)  

But I always found the concept of a visiting day and the etiquette involved fascinating because it was all so multi-faceted. The butler, of course, was there to accept a visitor's card on a special tray if the lady of the house wasn’t "in," even if she was, actually, at home. There was the placement of the card on a special tray and I always loved all the wonderful crazy-sounding details as to how the card would be placed, if there was a fold put on the card, and if so, in which corner it was made.  Like everything else in Victorian England, all had a symbolic meaning, from the flowers that whoever gave to whomever, to the "simple" art of calling on one another.

Well, today I suddenly, finally, really and truly understand the beauty of the visiting days and calling cards.  I’ve been feeling extremely "awful" (what other word describes so much?) this past week, the second one after my run up to get my hair, etc., done.  I’ve had my traditional Russian Easter recipes lined up and a list of groceries made up for hubby to buy from our local Kroger’s, as well as from the little Italian store that I suddenly realized might actually carry the farmer’s cheese for the "paskha" I would be making.  (I wouldn’t actually know because I’ve never been there and I haven’t been to a Kroger’s in at least two years, mind you.)  Hubby had found the missing Paskha mold a couple of weeks ago, which, I tried to convince myself, was a promise that somehow I would indeed be able to make the traditional Russian Orthodox Easter foods this year, that my adrenaline would, indeed, finally kick in. 

And it’s been especially significant that I do the traditional cooking and baking this year, as a symbol, if for not other reason. Last year, the first year I skipped this ritual in the 37 years I've been married, we were at the "major medical center" with my daughter just as my hubby was at our local hospital for a relatively minor operation - an emergency surgery that he was taken into just as my middle child and I were trying to catch up with the ambulance taking our daughter up to the medical center hours away from us with yet another death crisis.  Given that it was hubby’s first time in a hospital ever, that he was so worn out from running to and from hospitals and work, that his condition had become so "advanced" that they kept him in the hospital for several days, I was feeling really guilty that hubby was in the OR while my middle child and I tried to figure out what was going on in another city with my daughter. There is no end to reasons for feeling guilty if you’re a mom - it simply comes with the territory. I had to deal with some very ignorant doctors – monster arguments which even frustrated our principle doctor, her surgeon - who simply would not listen, teams of docs coming in and out….  Let’s just say, it was an awful time which, hopefully, someday we’ll all be able to laugh about.  I remember writing to a friend that no, this year I’d not made the cheese paskha nor kulichi and that if someone had spoon fed me those foods just after Easter Sunday as we had finally arrived home, I would not have been able to hold the food in my mouth and swallow, I was that overwhelmed, worried, depleted and exhausted.

But last night I had a melt-down.  I no longer remember what it was about, nor does it really matter. A lot of (relatively) little things went wrong and by the end of the day I couldn’t take it and just lashed out.  Hubby and I both realized that the reason for the disagreement had no relevance to the argument.  We both realized that it was because I was still upset that the appointment with my new sleep doctor had to be cancelled last week and that I was having a particularly harder time recovering from my "beauty day" than either of us had anticipated.  But the final blow: we both realized that with each day that passed this past week and me still not able to take a shower nor wash my hair, my sleep cycle being no sleep cycle at all but catch what catch can, the chances were getting slimmer and slimmer that I’d be able to do any Easter baking and cooking.

And just now, the blow that really hurt, though I’ve not decided exactly how and why.  Hubby really hated to ask me this since he knew how this would hit me.

But first, let’s go back a few years.  Ok, more than a few years, back to Easter 1988 or 1989, thereabouts.

In the Russian Orthodox Church, to put it simply, we do nothing the easy way.  We don’t even have pews in the church, and our Sunday liturgy goes on for a good two hours.  Depending on how slowly the priest speaks or how fast the choir sings, the liturgy can go on for way over two hours, and often does. There are folding chairs around the sides of the church, for those so sick that they have to sit down.  Given that there are women who are 90 years old and they do not sit, even when I was pregnant, I never had the nerve to use one of those folding chairs.  Don't even argue with the senior crowd on how "hard" this is because they are the first to point out that we "Americans" can go to cocktail parties and stand the whole time without feeling any hardship.  I guess point taken?

But doing everything the hard way seems to be our creed and I think we perversely enjoy it. That’s not to say that we don’t enjoy ourselves. We come and go all willy-nilly, in and out of the church.  Oh, we don’t turn our back to go out, it would be disrespectful to God to do so, just as it is too disrespectful to sit in His presence (hence, the no pews).  But we sure do a lot of walking out of the Church backwards and go out to have a bit of a first round of "catching up" before the end of the liturgy, whenever THAT might be.  For those of us under the age of 60 or so (because those are the ones born here, so we’re the radicals!) we try to time our getting to church after the Apostles’ Creed, yet before the Lord’s Prayer. Growing up, I always liked to arrive after the Lord’s Prayer since I still had enough time to get sick from the incense, pass out from the heat of so many people in such a small environment, but my mom always preferred risking me passing out or barfing, so before the Lord's Prayer it was.  When my kids were in Russian Orthodox camp, they used to love to keep count of the "fall and barf" tallies and still remember those days of standing in the sun very fondly.  How can you not love such a church? What traditions!

Anyway, it was Easter of 1988 or 1989.  On the whole, we tried to make an effort to go to our local Greek Church as regularly as we could, especially given that I was usually too sick to go to church and poor hubby, who took the kids to church was neither Greek nor Orthodox, puzzling and confusing some congregants, rightfully, to no end. This was all because I had yet to find the RIGHT Russian Orthodox Church that would do - we’re all full of various factions, as to which immigration "wave" we’re from, the kind that has "Outside of Russia" included in its title, etc.  "Our kind" could never accept the pews. Thank God the Greeks, and Ukrainians as well, have gotten over the pew issue for the most part. There’s a Ukrainian Church in town, but it’s a Ukrainian Orthodox Catholic Church. You’d think that would be a great compromise for me, given that my hubby is Catholic, and really, I am ethnically Ukrainian, but for all too many reasons, I feel closer to God in a Greek Orthodox Church.  I know: this is precisely the kind of thinking that has had nations go to war with religion at the center, throughout history, and will continue to, I am sure.  But understanding that hasn’t changed me much!

Anyway, I’d been feeling very far from my roots and that Lenten season I decided I would prove to God how much I loved Him and my church by doing the whole Lent bit.  I so love the relatively new word "vegan." Growing up in the Virginia years of my life, I would always have to explain to my friends why I couldn’t eat anything animal during Lent. This took a lot of explaining and I've never really understood how much Protestants understand the concept of Lent. My one Protestant experience was a Seventh Day Adventist boarding school (long story) and since we didn't eat meat there, that became a non-issue for me come Lent that year.  The Virginians of that early era, however, certainly didn’t understand the concept of no milk, cheese, nor eggs. The no-meat was a bit weird to them, but hey, I was a "Russian" and they all knew that the Russians were a dubious group at best.  In fact, most were often left scratching their heads over how I could be a "Red" or "commie" and someone who went to Church regularly. (And no, for those not used to my occasional sarcasm, I am not, nor have I ever been, a member of the Communist party!)  Enlightened, Hopewell, Viriginia in the early ‘60’s was not, a place that had little patience even with Catholics, so the rest of it was way over their heads. Now all that is covered by the word "vegan" and that, in and of itself, makes you sound so virtuous and admirable almost - even in a society that often simply gives up chocolate for their Lent.

So feeling that particular year that I would do the whole Lent bit, I went "vegan," normal Russian Orthodox operating style.  Understand that my doctors, who were still not sure what was wrong with me, but knew I was definitely sick because by now I’d had two abnormal spinal taps and was in the hospital approximately every two weeks, each time for a two-week stay, had long ago given me strict instructions that I was not to do any Lenten dietary restrictions.  But what do doctors know, right?

That Lenten season, I was feeling so virtuous, and looking kind of good, weight wise.  The kids ate their normal diet with a few restrictions I’d thrown in, the same for them as with how I was raised. But I felt my doctors were wrong about the dietary restrictions because my grandparents, who had died in their early 90’s at a time when people just didn't live as long lives as today, adhered to every one of the four Lents the Russian/Ukrainian Orthodox Church "required."  Besides, my philosophy went, I was made of strong stock: if Lenin/Stalin and then Hitler couldn't kill us, then what harm could going "vegan" possibly do?

I wish I could remember what the heck happened.  Honestly, after so many decades of being sick it’s hard to remember which year was dominated by what, but it had to have been bad because late on Good Friday after church, I was admitted to the hospital from the ER. The next day my doctor came by.  I have to admit that he and his wife were our very good friends so he had a heads up on what was going on in my life, as well as in my head.  I think he probably realized he’d had no meat the last few times he’d had a casual meal at my house and that going to dinner at his house, I’d not had any meat.  Actually, he had given me an informal lecture about it, but I decided to turn a deaf ear.  

So, my neurologist walks in the room, steam practically coming out of his head, and opens with, "do you realize I’ve seen Bowery bums in New York with better blood results than what I just found with you?"  And thus another lecture began.  "I've just spoken to the dietician and they are sending up a hamburger right now, and you are going to eat it." Given that it was about 2:00 in the afternoon on Holy Saturday and that Lent officially ends with midnight, when Russian Orthodox congregants all over the world stop and say (in their various time zones, of course), "Christ has Risen" and we all repeat, "Truly, He has risen," I really wanted to negotiate those final hours. 

"And no! No eating some broccoli with some cheese slapped on it will do," he preempted me, knowing exactly that I would try to get past the meat part.  Until then, other than a few Lents when I was really sick or pregnant, I did manage to be vegetarian. We bickered for a while, him trying to make me understand how truly sick I was, me trying to explain that the damage was done, him trying to explain we were talking about me being close to death here.  Sheesh!  What drama!

Finally he left with the words, "and God help you if you don't eat that hamburger when it arrives here. People are going out of their way to deliver that to you - the least you can do is eat it when it gets here.  You’re not out of the woods yet, but you don’t need to sabotage yourself further."  

Oh yeah, he had me shaking in my shoes: not!  With that he departed, me wanting to say, "Duh, I know this is bad…you have how many IV’s running through me right now???"

Finally, the hamburger arrived. I looked at it dubiously. It didn’t even look very good, adding insult to injury about breaking the fast.  My gosh, I thought, at least I should be "cheating" with some meat that looked and tasted heavenly (pardon the pun) not with a burger from a hospital kitchen.  Deciding that I wouldn’t be able to put it off much longer and that my nurse would soon arrive to see if I had eaten the darn burger, I took one bite in my mouth and started chewing and…

…it tasted awful.  But worse, I looked up and there was my priest!   Bless his heart, but he thought he’d run by my room quickly before the whole Easter process started at 11PM.   At our local hospital the beauty is that it doesn’t matter if you want your local clergyman to stop by or not: they do so anyway, regardless of what you check on your admission form.  At the "major medical center" I hunted for the chapel many times, followed arrows and after seven long stays, can tell you that I never found it.  But in our little town, by golly, you got your clergy whether you wanted to or not – and I love that.  When we asked for a clergy person in that medical center, it was only with the "Palm Sunday" visit that we had anyone come by.  Sorry, but I happen to think that when in a hospital, clergy should be accessible if you want to go that route too, especially with the principle that "there are no atheists in the trenches," and I certainly do like my clergy there, although perhaps not so much in that particular year on that particular Saturday just hours before Easter.

I looked up at the clock and saw that it was 6PM. I was only six hours away from having done Lent "the right way."  So close and yet so far, you might say.  Father didn’t bat an eye and made the motion that I should keep eating, and prayed over me as I choked on that burger. We’ve never spoken about it but I’ve always wondered what went through his head that day.  I’ve never even had the nerve to see what Lenten restrictions the Greeks hold.  None of it mattered, of course.  God knew what was in my heart.

And that’s what hurt, because I KNEW what I had in my heart. I was actually trying to probably make a deal with God and I should have known from my Orthodox upbringing and my Catholic education as well as my one year of living the Seventh Day Adventist life: God doesn’t make deals.

And so today, when hubby asked me the question that made me go into a tailspin again: our new priest, whom I met sometime just after the new year, not too long after my daughter had had her (we pray) final surgery when we asked him to come bless our house, called hubby and asked if he could come by and bring Holy Communion for me.  We’d had a rather long discussion when he was here that January day (the poor man: we didn’t realize that he and his wife had just had their first baby weeks ago) and he learned how badly I felt that I couldn’t make it to church on Sundays.  

But how to explain that you feel so sick that you can’t have someone come up to give you Holy Communion in your own home on that most holy day in the Eastern Orthodox Church?  That’s a hard one – for me.  It’s my baggage, I know.  I have to get over it, I know.  I know that I need to remember that God knows what I believe.  I have to believe that I’m doing the best I can.

But today I sure do wish there was a butler at my door who could have taken the priest’s card and told him I wasn’t in to see visitors that day.  Hubby will have to do it for me, since he’s the one who spoke with my priest in the first place, and I don’t envy him that. Both understand, I know, even as I try to put on a brave front and wish things could be different, feeling guilty because my daughter is now healthy.

And because the big things ARE good.  But it sure hurts to not be able to join in with traditions you so love and believe in.

(Христос воскресe, Christ has risen!  This to those who do celebrate Easter, but most years have to wait the extra week or weeks after the rest of the world has celebrated their's.  Bring on the sugar, meat and dairy products and ENJOY!)

Painting by Boris Kustodiev, with Kulich and Cheese Paskha in the background.

Laughing about the price of being a girl...

Happy feet in flip flops.

I hope that this is the last of any reports on my "beauty adventure" from last Saturday - for a while.  I'm crashing badly although yesterday I finally got a chance to check out my new washer and dryer - the one that's been in the house for almost two weeks!  It was absolute torture not to try out those machines with their bells and whistles, finally delivered to the house and not be able to do a single thing about it. Understand, I absolutely love doing laundry - one of my many quirks.

I also wanted to slip out of the house to take pictures of the tulips which continue to come up, as well as the dogwoods in full bloom.  Frustration.  Hubby did this for me but, bless his heart, he forgot the trees.  He also couldn't get the hang of cutting down MASSIVE amounts of lilacs for vases around the house, perhaps the one tradition I have every the spring, a total must.  The smell of those lilacs in the house always triggers some primitive part of my brain that says, "hallelujah! we're in for some wonderful gardens now!"

But one wild adventure a day (a load of laundry in case you've lost count) is almost too much and putting in a load of towels - well, since they were all whites, I figured I couldn't mess that load up too badly.  

As I've already established, I'm still crashing  - badly -  from Saturday's beauty adventure but the results were great.  First I want to say: it was FANTASTIC getting out of the house.  Not fantastic getting ready, but after that part was over, the rest was pretty darn good.

I loved going to my "beauty heaven" for my hair, mani/pedi, and having my eyelashes and eyebrows colored - the brows shaped as well, into the newest form which calls for a softer arch, and I am loving it.  Everyone did a great job and thanks to all that teamwork - emphasis on "team," which actually felt very much like a "village" - I'm starting to look like a girl again - OK, "woman," but understand that we females of a certain age still have a really hard time saying that word about ourselves with a straight face!

The "fixing me up" feels so incredibly renewing.  The hair is quite short (think "pixie"), my usual, with good highlights and lowlights.  Diana found FIVE more balding spots but was able work her genius.  Shaving my head (really!) is starting to sound better all the time.  I think I could carry off the turban look but my BFF said that a friend of her's was really miserable when her hair started growing out.  More misery I don't need.

But I'm so delighted that I now have eyebrows and ones you can actually see because of the coloring.  Lan, the eyelash/eyebrow superwoman, really was surprised that I have a few more hairs in the eyebrow area and this allowed the brows to pick up a lot more color than usual (go brow-hair growth enhancers!) thus deflecting the eye away from the age spots I love to fight.  I love that I no longer feel as if I have an arrow pointing at them for all to see.  Come on, I need a hobby and who says fighting age spots can't be fun?

I'm trying to organize the products I used - a lot, and I couldn't find some of my old "stand-bys - reorganization and decluttering badly needed!  Actually moving back to my bedroom and bathroom is what is badly needed.  Living with remodeling is the absolute pits and soon it'll have been a year on this latest phase alone.  

Anyhow, as I try to make sense out of my beauty products, my wardrobe, I keep getting flashbacks of an old movie from the early 60's, "The Flower Drum Song."  This is rather unusual because so many of us with CFIDS, CFS/ME, fibromyalgia, insomnia and migraines (etc.!) are so sensitive to sound and the energy that it induces is hard on our neurological systems, giving us an artificial "high" which we then pay for later, in SPADES!  Nonetheless, I keep wanting to burst out with one of my all-time favorite songs, "I Enjoy Being a Girl!"  

I saw the movie back in the old days when there'd be a double-feature and you'd usually walk in to that first showing, caring not one iota as to which part of the movie was going on - probably because no one seemed to keep track of time back when life was slower in the '50's and early '60's, most especially in the South.  You'd watch till the end of the first movie, then enjoy (hopefully) the second film, usually leaving when you reached the point where you'd walked in with that first feature - or when your parents wanted you back home again, whichever came first, I suppose.  

Well, not me with "Flower Drum Song." I watched it three times!  That's a whopping six plus movies in a row.  How did my backside handle it?  I guess it was being so young, a nine-year old.  

But even back then, though I was an unrepentant and proud tomboy - I actually earning myself the nickname "Jane" (as in Tarzan's wife), after one episode of beating and scaring the tar out of the four older boys who were attacking my younger brother.  EVERYONE called me a tomboy (as well as "bookworm' but that's for many later posts) which I rather liked.  It was an identity I carried proudly, despite the ballet lessons I took each week.  But I ALWAYS knew I loved being a girl.  The words, "with a pound and a half of cream upon my face" from the song "I Enjoy Being A Girl" fascinated me and drew me in.  After "The Flower Drum Song," I wondered about all those "girly" things for days and days...if not years and decades!

Oh my.  I just took a break and returned from YouTube. I discovered that there was a book, as well as Broadway and West End versions, of "The Flower Drum Song" and the movie's hit song, "I Enjoy Being a Girl."  I'm so incredibly happy that it's not been forgotten.  It would be like forgetting "the Sound of Music."  Actually, I can envision Maria singing, "I Enjoy Being A Girl" from that mountain top!  I think I've been won over by the latest version of the song with its peppiness and gusto.  I don't usually go in for peppiness but when I have to do "the girl" thing, as when going out for a doctor's appointment, this may start my blood flowing and, what little adrenaline my body can still produce, to start percolating.  It's certainly worth a try.  

So, hands and feet, check...a huge consideration since I can't do these little jobs since the accident with "the claw."  Of everything, I miss manicuring the most - how crazy is that?  Anyway, eyebrows and eyelashes check.  Hair cut, highlighted and low lighted within an inch of it's life, check.  New skincare products to try and to enjoy, check. (More on those at another time too!)

"I Enjoy Being a Girl" from "The Flower Drum Song," thanks to YouTube, check.  Here's the link. I hope you enjoy the gusto even if you don't happen to be a person who cares for perkiness.  But it does get the adrenaline flowing and reminds you why we "women" love and need these little extras in our lives, despite paying the the price men just don't understand! 

http://www.youtube.com/watch?v=URlW5NK2doA 

(If this link doesn't work, simply go to YouTube and put in "Flower Drum Song" as sung by Lea Salonga.  I think it's worth it!)

Beauty To Consider: BB Creams and Silicones....

East meets West:
In light of this being "Western Easter," Eastern Orthodox Easter next week, I thought it'd be fun to show the first compromising of our two cultures blending together as one family.  I love the skeptical looks on the females in hubby's family and won't even try to say what my mom's probably thinking. The tiny bunny was probably the only thing all agreed on!

Just over a week ago, in order to try to cut down on my feebly slow "getting ready in the morning routine" for my appointment with the beauty heaven I was (hopefully) heading to, I thought I'd try a few new beauty products properly.   As always, I'm on the hunt to look my best - with a minimum of effort, please! - in the ever-desperate hope that the savings in time will give me more time/energy for the actual event.  And I'd hoped that I'd have tips or new info to send on to my readers as well.  

I thought I'd test a few more of those BB creams I'd mentioned in an earlier post. May I say how surprised I am by the fact that so few people I've spoken to lately have never even heard of BB creams?  Wow!  For perhaps the first time ever, I may be at the beginning of a trend as opposed to the end of one. Excuse me while I pat myself on my back - and try not to break my arm doing so!

A few days ago, my daughter stopped by the house and I ambushed her as a very reluctant tester for two products, one of which was a luxury sheer coverage foundation I'd put on half of my own face hours earlier in the day.  Yes, the makeup looked nice and I could  see a difference but it was not really worth the exorbitant price. On the other hand, I liked it enough to want to try the fuller coverage version and will get back to you on that when I get up my nerve to order it - enough damage has been done to my wallet lately in the beauty department.

At any rate, when asked if she could tell which side of my face had the sheer coverage, my daughter could see the difference immediately, though she too agreed that it wasn't worth the price.  After putting some of the sheer coverage makeup on her face, I wasn't impressed with it either, though for a different reason. The makeup didn't melt into her skin.  Something was off.  Perhaps it was just too mask-y looking. But, aha!  I thought to try the Dr. Jart+ Premium BB cream on the other side of her face.  

Oh how I love having a daughter!  She too loved the packaging - UNLIKE her dad, who had a hard time finding ANY enthusiasm for it a few weeks ago when I showed him the beautifully engineered and designed "tube."

The Dr. Jart+ went on beautifully. I loved it and best of all, she loved it enough to take my tube home with her.  Actually I think what she loved most was the fact that the SPF was a whopping 45 and though the skin tone had evened out beautifully, she still looked very natural with her freckles peeking through.  I loved it because you could absolutely tell the difference: it just lifted up her skin, making it so fresh and looking almost as if she'd been on vacation, masking the signs on her face of the influenza (not just the "flu") she'd battled a few weeks ago and was slowly recovering from.

So, the next day I tried two other BB creams in order to not have to borrow my daughter's for my one day out of the house... my replacement, which I'd just ordered, would not arrive in time for my great escape.  I tried Clinique's and Boscia's versions. Both companies I like quite a bit.  I've bought their products in the past and been happy with them.  I must say that one of the BB's was OK, but something was still off and it was hard to put my finger on what it was that made it look so wrong. And one or both caused bumps on my face, as well as redness. Furthermore, I had to wash the BB's off BOTH sides of my face within less than a half hour - why I thought the burning would go away for both products I have no idea.  And, BTW, I've never before returned a beauty product - with the caveat that I don't ever REMEMBER doing so - but you can bet that those two were going back; they were in the mail the following day.

I suspected, but now am fairly sure, that I've a problem - I may have an allergy to silicone.  

After my first office visit with my plastic surgeon to get the stitches out for "The Claw," what I affectionately call my arm and hand these days, I was given a silicone sheet to wear on my approximately 30 inches of scars.  I waited for everything to be healed with no broken skin, as instructed by everyone I saw that day.  I swear, I felt as if I were Moses receiving the commandments by God when the silicone sheet instructions were given.  I was nervous but I was really excited.  When I arrived home I sent an email to my best friend and told her all about this miraculous new treatment. I'd googled it, of course, and had been so thrilled to read the rave reviews. Naturally, I'd want my BFF to know about this immediately.  (Oh, of course she must have known this telepathically, but I just had to be SURE she'd gotten the message!)

Finally, I figured out how I would cut the sheet to allow it to fit all of the scarring.  The directions said I could wear the silicone sheeting for just about all day and night, only taking it off for a little time.  My surgeon and his support staff said to put it on for only six hours and no more, but definitely for the six to get the full benefits.  That was rather complicated, since as mentioned before (Ha!) I don't have any predictable sleep patterns.  If I put them - the now cut-up strips - on during the day, I might fall asleep.  If I put them on at night, the same concern.   A few days later I bit the bullet and told myself to stop all the tomfoolery and just get on with it.

Well, after about five minutes, my ever-observant hubby looked over at me and said, "You know, if it hurts you SHOULD take them off."  Well, I had no idea why he said that...I hadn't noticed the tears rolling down from my eyes, "the tell." I answered, while staring at the TV, "That's OK.  I can do it."

Hubby looked at me (again) like I was the crazy one and said, "If it's hurting, take it off - IMMEDIATELY.  Are you nuts?  You're probably having a reaction."

Me?  Nah! "Oh, I can take it," I, more or less, whimpered.  "I don't want those scars!"  

"Are you bonkers? Take those things off and let me take a look at that. Really!" he said, a tad exasperated.

Well, the entire area covered by the strips was red, angry and inflamed. And the spots and lines where the staple holes were - the ones that make you look like Frankenstein - had, more or less leveled off before, but were now back to being ugly, pimple-looking creepy bumps. Gross!

It was awful.  I could take the nettle-stinging feeling but to have such a huge step back in the healing - well, you know how vain I can be.... Or should I say how much I'll give up to look good.... This was a definite mistake.

Of course, I emailed my BFF immediately because with our luck she or one of her (grown up) kids would just have had the sudden misfortune to also be in a position to need those silicone sheets - at that very moment! - and someone would inevitably be told, "Oh, Irene's doctor gave her that and she googled and read in tons of places that this is the best thing out there" and end up having an even worse reaction than I did!

OK, folks, I can be slow. But it finally dawned on me that one day, at the "medical center" with my daughter, I'd put a new primer on my face and immediately, it burned so badly that I threw the sample away - right after thoroughly washing my face, first with warm water and Dove (I always go back to Dove, don't I?) and then applying very cool water compresses because my face was red and getting inflamed, followed by my skin-saving and rescuing LaMer.

After the silicone sheet fiasco, and keeping in mind the one primer reaction, I started noticing reviews on Sephora and other beauty sites about women having problems with dimethicone in beauty products.  It finally hit me that I too must have an allergy to silicone.  But I had been using silicone all along, I realized, as I started to read the ingredients on various beauty products in my cabinets and drawers.  Talk about a headache!  I suddenly realized why I disliked chemistry so much in high school.  But it was fascinating that there were some products that I really didn't care for or some I loved and it was the dimethicone that seemed to be the main difference.  The few products with silicones which didn't seem to bother me were those that looked as if they hardly had any silicone in them.  But I soon realized that perhaps some products were formulated differently - such as with buffers?  What do I know?  To further confuse the issue, I realized that silicone goes by many different names.  

The point is that the reaction didn't hit me strongly under most circumstances.  On the other hand, I seemed to get unexplained little bumps on my face that I had thought were due to nerves about my daughter's precarious situation - they may have been, instead, reactions to the silicone.  Under some circumstances I may not have been getting a bad reaction, but what were those circumstances?  So, at first I stayed away from all silicone while doing research - a guaranteed headache-producing exercise, let me assure you.

I was "outraged" when I read on one skin store's blog site, written by a physician, that Vitamin E should not be used for scars because reactions - allergies - could take place, but that silicone NEVER had any adverse reactions.

OK.  Let's see if I have this straight.  There is something out there that NO one has ever had a reaction to?  Hmmmm.... Ever heard of the exception to the rule?  Well there you go.  Someone's either not thinking or is stretching the truth if they say there's NEVER been an adverse reaction to something.  Don't even get me started.

At the same time, I was suddenly coming across sites with on-line shopping where they proudly advertise the fact that THEIR products have no silicones at all.  The reviews on any number of beauty sites report women having reactions to silicone. It's a HUGE concern.  Some women make silicone sound as bad as when doctors demonize cigarettes as if they were the equivalent of smoking crack cocaine.

When my surgeon's assistant suggested Vitamin E oil, her boss scoffed at her (in a light-hearted way) and when I piped in that I believe in the effectiveness of arnica and lavender essential oils, for example, he looked at me as if I were bonkers.  But he was all for the silicone.

And I don't blame him.  He's kept up with the medical studies that are constantly changing.  These include papers on Vitamin E oil therapy, the latest saying it was the massaging that made the difference.  And of course he wants minimal scaring.  He wants what's best for me.  Furthermore, it is, after all, his work that is on display for the whole world to see - especially when I don't wear sleeves that go from my shoulder down to my fingers.

My feeling?  I think big pharma is putting out good money to keep yet another nasty pharmaceutical problem hidden as long as they can get away with it.  Call me paranoid, but that's exactly what I'm afraid of.

I might have been foolish, but I finally made the decision to go with selected beauty products that have SOME silicone. First, I would continue with the products which I hoped weren't causing problems, for whatever reason, my go-to products.  Secondly, that was after looking at the labels and ensuring that there was very little silicone content in anything I put on my skin.  I would trust the manufacturer to adhere to the requirement that the substances in the products are listed from the highest amount to the lowest.

I mean, the silicone really makes products glide on so beautifully and there are a ton of other pro's for the way they function cosmetically.  It's an incredible new resource for the beauty world from makeup to hair to skincare.

My immunologist, however, said I many want to rethink that, given my extreme reaction with the sheet.  A first allergic reaction, as what I had with the strips, COULD lead to a more severe reaction with the second or third exposure to the substance. In other words, nature is giving a person a "pass" the first time around.  It may be nature's way of not killing off a person the first time, while giving that person a warning (i.e., the bad reaction) that something is off and not working...beware! Nature, evolution - whatever you choose to call it - may thus be offering a second chance at being smart the next time around and figuring it is the fool who goes back for a third or fourth time and Goodnight Moon!  Not necessarily so, but did I want to take that chance?  Had I forgotten the primer incident too?

Geesh!  Perhaps I really AM lucky that I'm bedridden...I don't need to go out much anymore.  Therefore, I don't need to make a decision as "to silicone or not to silicone": that is the question.

Groan...did I really say that?  I guess so!

But I definitely want to work with my Dr. Jart+.  That stuff may be joining my very tiny "hall of fame" keepers.  

..the good, the bad and the ugly (skin!)...

My mom and I on the crazy trip to visit my daughter: we were NOT in Florence!

Skin problems are often seen in people suffering from CFIDS or CFS/ME.  And because of the various symptoms/conditions we pick up along the way as a result of our wacky immune systems, at times our skin can develop rather major problems.

Out of nowhere around 1998, I suddenly developed huge hives over my entire body. My feeling? Crud.  I'd already had pityriasis rosea, a childhood affliction which I managed to develop as an adult.  I also got a nasty case of shingles after my children came down with chicken pox, all three right in a row.  

The funny thing about the shingles episode was that it is rarely seen (at least back in the 80's) in young adults but is seen mostly in the senior population whose immune systems are compromised.  This should indeed have been a bit of proof to the doctors whom I kept telling that there was definitely wrong with me. (Please imagine an eye roll here. Thank you!)

Another point I found interesting is that in order to have shingles, you need to have had chicken pox first, something I never had as a child.  Doctors have told me that I must have had a sub-clinical case, one where I had chicken pox but never actually came down with the bumps and markings.  I still have a hard time believing this is the case because my mom and I have examined each and every possible medical event in my life and there simply never was a time that I had the virus in the form of chicken pox.  Surely I would have run a fever at some point, at the very least.  But really, as a kid I was as healthy as an astronaut prepared for space travel.  No ear aches, barely a cold, though I did have the occasional sore throat and, of course, headaches.

Furthermore, our systems are so messed up that it wouldn't surprise me if I'd never had it and simply went into it, bypassing the root virus.  I mean, who REALLY understands these things?

So, here I was, stuck in 1998 with these huge hives which made me into an itching machine. Some of the hives were plate-sized and in some areas the hives had hives.  Honestly, I looked as if I belonged in some sort of freak show. Worse, my daughter had moved to Florence because NYU had suddenly been gifted a breathtakingly gorgeous Villa by a generous benefactor and was spending a semester there. Lucky girl.

I love to travel and I was sorely missing my daughter.  I know you can guess what's coming next... but you might also be surprised.

Amazingly enough, time-wise, I had just spent an entire year going to a holistic clinic in Columbus, Ohio, every week for an entire day or two or even three at times, of intensive treatments for my core problem, CFIDS/Fibromyalgia and the off-shoot problems.  More on this part of my "journey" at another time, however.

Because I felt relatively healthy, I thought I could handle a week of seeing my daughter, and the trip wouldn't be too much of a financial burden since I had the frequent flyer miles to make the airfare a nice zero dollars.

But (and really and truly, there always is a "but") I broke out in hives a couple of months before I'd even imagined this trip to Florence. Pitiful. I did NOT want to go the steroids route and resisted it for weeks as I itched, scratched and was totally miserable from this wicked state of affairs.  My weight was at a comfortable place and I really didn't want to become an eating machine with the off switch broken yet again.

When the idea of visiting my daughter in Florence came up, however, suddenly the steroid option started to sound good. And after a course of steroids, my hives disappeared for a while. Just as I was about to leave, however, the hives came back and I needed a steroid shot again. To give a quick summary of the hives aspect of this story, I'll simply say that those hives did return and continued to do so for quite some time until we finally found an anti-histamine that I've now been taking for years as a prophylactic measure.  As soon as I forget to take those little pills, the hives would come back.

My point?  All too often, skin issues are a very real, often severe, and an always annoying issue for "us." Thankfully, I have developed a huge array of options now which don't include steroids (knock on wood!), which often help me avoid drastic measures. Saturday and the following days after my beauty adventure was one such example.

Once hubby and I walked into the "beauty heaven" on Saturday and could collect our thoughts before starting the whole rigmarole, ever observant hubby asked me what the heck had happened to my neck and decolletage, the fancy word for the delicate skin on the chest area. I had huge, and I mean HUGE, blotches on my neck and chest, and I'd used nothing but my regular Dove when I showered.  A couple of areas had what looked like scratched bumps which were open. I suppose it was simply too much for my system to wash as well as go out - too hard for my system to endure.

This had happened in the past, just a bit.  I remember being embarrassed once while at an appointment with a cardiologist - a five-minute trip from our front door.  But Saturday's redness was way beyond what I'd seen in my "normal" past episodes.

To make things worse, the further along we went on with the day, more redness kept appearing, seemingly growing as if it were being fertilized.  At one point ever-observant hubby said it looked like he had tried to strangle me...and done a messy job of it at that.  Angry, red, though thankfully no welts, it looked almost as if someone had poured acid on it.  I must admit I wasn't too concerned and explained that this happened practically every time I went out, ever so patiently - as well as condescendingly - to my nosy hubby.

Got home and WOW!  What a shocker to see the mess in my own (larger) mirror and to realize that it had progressed during our ride home.  OK.  I admit we did stop at TJ Maxx, a compromise because I really wanted to go to a good Pittsburgh mall, and hubby was outraged. And I admit that I have that tendency to really want to run if I can do so at all. But in this case I had never been to the "new" TJ Maxx, despite the fact that the new strip mall was not so new anymore and I thought it was a good time to remedy that situation.  Plus I wanted the observation I made to a friend of mine when I burst out in frustration one day, "I don't do malls, I do CONTINENTS!" to no longer be true.  So I did have my reasons for going....

Back to the nasty red thing.  It was also now starting to hurt and my fingers wanted to scratch it, touch it like your tongue touches a sore tooth.

I looked over my supplies and saw "The Green Balm" among my (newest) goodies, ordered from "Cult Beauty" in England. I bought it because it WAS from "Cult Beauty," after all - a new discovery for me.  They really do carry only cult items, not full lines of any brand, but the items "everyone," professionals and the peons like me, are wild about.  Each product they carry is there because it really works.  What a fantastic idea!  This balm (I'd ordered an assortment because of a free international shipping promotion combined with a discount, courtesy of Ruth, the model, whose blog I love to follow) looked promising.  No "bad" stuff in the balm at all. All so very green and gentle that you can even dilute it in water and gargle with it, according to one source, though somehow I don't think I'll be trying that too soon.  

I gingerly patted a bit on my neck and decolletage and it felt heavenly.  A couple of hours later I noticed the area had really calmed down.  Hubby was duly impressed.  By the next morning, it started to look like I had simply had a bit of too much sun, skin turning almost into a tan.  I knew that with luck I would not be getting the bumps or discoloration which these sorts of rashes can cause, not even the tiny scabs that can occur.

The red angry rash, or whatever the heck it was, was practically gone - well, in some lights. The places I touched as I reapplied The Green Balm turned redder again, not happy about being touched but within ten seconds the area was back to the barely visible redness before touching.  My skin was also sooo soft.  

So this is the story of MY adventures with skin problems with this DD.  I have more I'd like to touch on in further posts. I'm trying out another product that looks promising in the oils area as well as those BB creams I mentioned last month.  

I do hope that this has helped some of you (possible) readers out there, at least to know that you're not alone.  It's a crazy illness which no one really understands.  

I also hope that there may have been seeds of thought cast out there for you to consider.  If and when you happen to run into these skin problems, my adventures may shed some light as to how you choose to treat them.  

And if nothing else, I hope you've had a few chuckles to make your day that much more happy/bearable.  I really do believe in the power of humor and laughter, right there after the prayers and positive thoughts we send out and receive.

You Never Get a Second Chance to Make a First Impression...

So doc, what do you  really want?

What to do?  Later this week I have an appointment with a head honcho at a major university medical center, a huge guy in the insomnia/sleep field.  As much as I'm hoping and praying for miracles and as much as I try not to get my hopes up, I just know we are in for a huge let-down.  On the other hand, all bases need to be covered since I am getting too old and too sick to deal with this huge sleep disorder without real help. I am really, really desperate. I don't want lip service.  I simply cannot afford it any longer. 

In earlier posts I wrote about the importance of first impressions with anyone in the medical field and just how important the almost superficial factors can influence the care you may receive, unfortunately.  On the other hand, I've also written about how you really do NOT want to look too good (if at all!) when going to a doctor because of the "fooling" factor.  On the one hand, I strongly believe my doctor needs to see what I really look like and what insomnia is doing to me, with no cosmetic concealer hiding the worst of the damage.   

However, on the OTHER hand, I've seen doctors who are .... humm ... well, just plain nuts, to put a nice spin on some experiences I've had.  One HUGE expert in CFS (and with him I'll use the dreaded and hated title because he does NOT deserve the "enlightened" title of CFIDS nor ME with his name) had so many facts wrong in the follow-up letter he sent me after my appointment that at first I thought he'd put another patient's letter in my envelope by accident. Understand, months in advance, his office sent me a questionnaire, along with a "request" for a multi-thousands of dollars check, due thirty days in advance, or no appointment.  I didn't really have a huge problem with the payment because I knew that a 35-year history of this illness was complex and how much money had we already spent on so much testing, treatments and so forth over the years?  Actually, because the questionnaire was so comprehensive, at the very least twenty pages long, asking every obscure question imaginable, down to even my grandparents (which impressed me to no end) and mailed to the doctor a MONTH in advance, gave me high hope that finally I'd found the right person. Wow!  He'd really be familiar with all that had happened over the decades.  The questionnaire was so long and complex that I could only answer a few questions, my brain fog, pain and a myriad of other problems forcing my hubby to supply and write down most of the information, which I then edited and checked over a period of a few weeks.  The FBI under J. Edgar Hoover was less thorough.

The mistakes in the evaluation letter were big as well as small.  Many were ones that would not have been made had he read my history, that is the answered questionnaire, while dictating his letter, or had he really listened to me in the first place as I spoke, actually listened to the answers I gave HIS questions and then had he jotted them down on paper during that infamous visit instead of trying to impress me with his new tiny laptop which he spent way too much time piddling around with as he tried to enter information. Furthermore, yes, I have brain fog.  Because my brain is so befuddled when I speak, as well as my well-established position in the strong belief of a health advocate, as well as for there to be no misunderstandings, my daughter and hubby were there with me to fill in anything I couldn't remember or was unable to answer.  This had worked well in the past, after all.

To make things worse than the huge number of errors in the objective aspect of this whole consultation, this doctor made very uncomplimentary comments - in the letter to ME - about my appearance that I shudder to think what he might have written behind my back had I given him permission to send any correspondence to any other doctor.  For example, I had worn a very simple, loose black dress because I was given instructions to wear loose comfortable clothing - evidently there was to be movement involved (there wasn't).  And I wore no makeup precisely so that he could see my true coloring but instead he wrote words in my report which basically read that I was a lazy, plain-looking woman who could not be bothered getting dressed up for him, nor putting on any makeup for him, and saying in fact that because of this, it was his opinion that I was depressed.

On the other hand, the next-to-last sleep doctor I saw said I was a very attractive, well-put together female who appeared NOT to be depressed as my hair was well groomed, I was dressed nicely and I had make-up on.  He added "slightly-overweight" and since I was, I had no qualms about him adding that. It was honest and I liked that.  Unfortunately, he'd never even heard of melatonin.

So, what to do?

Maybe I should just bring pictures to this new guy, give them to hubby and have him ask the doctor which he'd rather see, the good ones or the bad ones, as I sit behind a screen so he never sees me.  No touching is needed, after all - how many neurologists bother seeing what your reflexes are, or CFS doctors want to see if you also have trigger points, if your lymph nodes are swollen and so on.  Heck.  Maybe our appointments should just be by Skype, something that some of the younger doctors are seriously considering, insurance companies are pushing, but scares the HECK out of me.

What do you think?