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?

Laughing and crying about beauty and medical centers...

The wedding dress bought at B.Altman's, 1976.

Laughter. It's sort of what I've always been "famous" for in my family.  But it was on Friday, August 13, 2010 that started me on my path to laughter which would make a world of difference in our family's life. We'd always laughed, but never under such trying circumstances, an understatement.

You see, my daughter spent many weeks in hospitals in the past year and a half, starting on that dreaded Friday the 13th, with many long hospitalizations.  It was absolutely the worst time in our family's life, bar none.  Not to put a damper on things, but we almost lost her, more than once, and are still in a state of shock, all of us trying to recover from the nightmare(s). It was a relatively rare disease and though we were fortunate enough to have had some of the best doctors in the country on her case, finally in a hospital that's ranked number two in the country for her illness, even those doctors were stumped, the ones at the medical center she was suddenly transferred to one night during her third local hospital stay in three weeks.  They, the world's experts, had never seen anything quite like what was happening to our daughter. It become so horrid that on one particular day I remember about twelve doctors coming by with their teams of residents and fellows - during her fourth hospitalization there, perhaps?  It was such a madhouse that there was a backlog...the docs and their teams were lining up in the hallway, awaiting their turns. Never had I seen a sight like that before, or since, anywhere!

I can laugh about that day now, but at the time it was very frustrating, scary and maddening.  My daughter was so ill that she remembers almost none of this, but when she could talk to where we could actually understand her, she was definitely not the sweetest thing to come along.  She'd always been healthy and perhaps did not have the skills needed to endure the repeated tests every single day, twice daily, swollen arms and hands from so many "sticks," the weight loss of 45 pounds in just 25 days because she couldn't even swallow water.  On the other hand, who does have those skills?  Her pain threshold was supreme, something that her pain management people woefully did not get at all. Having been in the pain field as a patient and knowing more than a bit about it myself, as well as having access informally to very well-informed medical sources to check my supposed knowledge, it'll be a long time before I can forgive some of the docs involved in her case, as well as more than a bit of misinformation, on every one of her seven hospitalizations in that medical center alone.

But my reason for writing about this?  Well, I'm trying to make my posts shorter so I'll come back to other reasons in the future.  I'll just make one, (or two?), observation at the moment.  And that is...

First impressions, added with laughter and inside jokes, count!!!  I cannot believe the difference in "attitude" I received by staff, be they nurses, aides, "junior docs" or attendings, by the way I looked!  I realized this quite early on and it was maddening, but like everything else at the "medical center," it was trying to play the game - of Life! - to your best advantage and for extremely high stakes.

First of all, let me say that there was no one more surprised than myself that suddenly I had this energy to stay with my daughter every single day she was in the hospital, not leaving her side 24/7 unless another family member was there to spell me - her dad or one of her two wonderful brothers. It was a complete family affair, I'm proud to say.  If they weren't able to be there, I'd pick someone and put them on notice that I was making that person responsible for the minutes I was away.  In all of this insanity, my maternal instincts kicked in full-speed ahead and an extremely productive and dangerous lioness came out.... A crazy one at times.  I'm still angry with some of the physicians whom I had extreme arguments with...who will, most probably, forever be on my "poop" list.  I'm a mom...what can I say?  Worse, I'm a mom with an education, learning skills, an inability to be too cowered by authority and armed with excellent sources of medical information, often better than the ones at the medical center.  Unlike most, I was not scared of anyone or anything but my daughter's disease.

On the other end of the spectrum, there are the incredible physicians, and one surgeon in particular, who literally saved her life and then gave it back to her in a way that is enabling her, as well as the rest of the family, to have a life definitely worth living and enjoying.  I thank every guardian angel, human or otherwise, for having been there and who continue to help our entire family.  God's best idea: Guardian Angels - after daughters, that is.

But back to first impressions!

I've always known that the way you look affects the way people treat you.  It's a fact of life, sorry to say.  I first tested this at B. Altman's, one of my favorite 5th Avenue department stores, back in our "salad days" with my new hubby.  One afternoon I happened to be browsing, looking at coats specifically, and not one sales person came to ask if she could help.  Usually, you get eons of salespeople when you just want to be left alone to actually think.

Walking back to our apartment (the 50-cent bus fare was just too much for our budget) I started dissecting the no-sales-lady experience.  By the time I got home, I realized the problem.  I didn't look like a bum but I did look like a student who had no way of affording anything in the store.  Everything about me that day screamed "student": the pulled back hair in a barrette, the very little makeup, the jeans.  Understand, this was the mid-70's - a time when many restaurants in New York City wouldn't allow a lady wearing an elegant pantsuit to enter their premises, so imagine the impression of jeans in this very "establishment" store!

I was a bit heated about this and just couldn't let things lie.  The following day, I rolled my hair (no blow dryers available yet, nor any good hair products), put on my makeup very carefully and especially elegantly (though how elegant can a 24-year old be?), my nicest "outfit" with the buttery suede jacket and the beautiful brown high heeled boots I'd splurged on in Rome (yes, Italy...it was a chartered flight!) and faster than you can say "prego!" I had, at the very least, five sales ladies come up to me, immediately, in the very department I'd browsed the day before, each one trying to tempt me with other coats I might not have noticed.

That lesson has always remained with me.  I tend to have a weight problem due to this DD.  In my better times my weight is good.  I'm not thrilled with it, but I can live with it.  But I always say you can tell how I'm doing by my weight.  In my worse times, my weight starts getting up there.  And believe me: people, across the board, in every aspect of your life, treat you better when you're thin than when you're heavy...from the person at the supermarket to doctors.

So, when my precious daughter got so sick, you better believe I forced myself to dress in a friendly fashion, even going so far as wearing different cool boots or a cute handbag or fun watch which inevitably I'd get a reaction to, making the interaction that much more human and friendly, leading, of course, then to laughter, often breaking the tension.  And that was one of my prime reasons for being there.  I tried to make my daughter laugh as much as she could handle, even if it was at my expense or me playing the fool.

I learned to leave my daughter's side about every 24-48 hours when I started to get a bit ripe and in twenty minutes I could get to the hotel room, shower, do my hair, put on vast amounts of beauty products to get the new no-makeup look, pat just the tiniest bit of lovely scent on me and rush back to her room.  Twenty minutes!  I can't even wash my face in twenty minutes on a normal day, but my daughter dying gave me strength that I truly believe Clarence (remember, I recently named my guardian angel?) and God gave me all those weeks and months.

But I'd like to add that there were a few days when I looked far worse than anything any cat could drag in.  Those were the days that I was not noticed, totally ignored and not made a part of the discussion of what was happening.  Coincidence?  I think not.

So, my advice to all:  first, everyone who is ever in a hospital needs a health-advocate. This is PRIME!  Mistakes are made, staff gets overloaded, "junior docs" don't read charts, attending's can all too often be aloof, arrogant, or worse, clueless, especially in a place so large where the left hand doesn't know what the right hand is doing.  You absolutely need someone there at all times to help your loved one get through the whole process - hopefully, alive!  (And yes, I do want to have a long and in-depth discussion with the CEO of the medical center - not to be too hyped up on myself, but I do think he could learn a few truths about what is really going on in that establishment. Much good, yes, but there is bad too: very bad.)

Secondly, I've forgiven B. Altman's for the way they treated me that day I wore jeans :). I mourn the day they had to close that wonderful institution.  After all, I even bought my wedding dress there...and it was a very classy experience, certainly too classy for this young girl on a very limited budget.

(And if anyone wants to experience a great read of B. Altman's in their heyday, there's a wonderful book by Adriana Trigiani, Lucia, Lucia!, a fun and sweet novel which describes New York in 1950, living down in "The Village," and working in the couture department of B. Altman's.  Any guys out there may want to give the book a pass, but it's a bit of magic for the gals out there.  Not too off-topic, am I?)

But the biggest advice I can give here: keep up your sense of humor. Each person, from the transport people who would wheel my baby in her bed down for tests, to the nurse's aide who got my daughter addicted to some sort of banana Popsicles, to the night receptionist who loved to joke with me about our mutual love of the smell of new leather, to the Ukrainian nurse who held my hands in those first days when I knew absolutely nothing about this illness - had never even heard of this darn thing - when we joked about whether Russians really couldn't understand Ukrainian or were they pulling our legs? (as we spoke in Russian and not in Ukrainian), to the EEG technician who talked to me about the Russian Orthodox church nearby (that I never, regretfully, got to) and then went through our six degrees of separation to see who we might both know in the nation-wide Russian-American community, to the Romanian aide who would try to get my daughter to do all that walking - and talking about the foods she taught her daughter to make, to the Romanian cleaning lady who told me that my smile was too beautiful to sacrifice for tears...everything was made more endurable with humor and laughter.

Well, that and a bit of mascara.

My Hair and Beauty Outings...

Don't we all want to come home from the hair salon looking like we did in our 20's?

On Saturday, I will hopefully have an appointment for my hair with a few other goodies thrown in. I've now gone at the very least eight months since my last hair appointment and I'm looking especially pathetic and old, gray and dull, not to mention "holy," which will become clear in a moment. I'm always worried about the whole process because of three reasons.

First: This visit has me particularly uneasy because I've been so sick that we've lost count as to how many appointments have had to be cancelled at the last minute.  I feel like a second-class citizen when I walk in after so many cancelled appointments.... I just hate being so unreliable. Really hate it.

Secondly, I must admit that I do have a real love/hate relationship with going in for my beauty adventure.  I always say, with no sarcasm or exaggeration at all, that I'd rather have a root canal done than go in for a hair appointment.  You see, my hair is very fine and thin...and getting thinner every day, unlike my body (groan).  About 15 years ago, I finally found a miracle worker in Pittsburgh, an hour drive well worth the "health cost."  I'm trying to figure out how my talented and imaginative Diana will attempt the latest challenge - a four-inch bald spot that resulted from the incident I had with my arm/hand back in November. She was already working around two other bald spots but they were just babies compared to what I've got going now.  I've been using men's Rogaine foam (I know it says that it's not to be used for women but I did some research and it looked kosher for my needs) plus Phyto vitamins for hair, something that's helped me in the past.

However, I am arming myself with pictures of when I discovered that crater, six WEEKS AFTER coming home from the hospital.  Did no one think to mention that I had this huge white scalp showing in the back of my head? Did they honestly think that I wouldn't notice it eventually??? Plus, because of that tiny problem of my almost dying a few times during that hospital thing, my hair in general had started falling out.  Anyway, I'll have those pictures for the moment Diana sees that huge hole in the back of my head and mentally throws up her hands and finally admits defeat. Poor woman needs some hope that this latest bald spot at least has a chance of growing back in. Should be interesting.

But going in for my beauty adventure is always an experience I dislike/hate for many reasons despite the fact that the women (and men) who work there are wonderful.  I love them all.  They are kind, not noticing how ill I am without appearing callous, yet never condescending nor unconcerned, yet at the same time appearing not to notice my cane. Hard act to do well!  Of course, I don't know what goes on behind my back, but  I do love two women there especially, Diana, the aforementioned hair genius, and my newest discovery, Lan, who does a beautiful job of dying what I have left of my brows and lashes so that they can be seen.  I must admit, however, that I'm so looking forward to Lan noticing the bit of growth in my brows from the hair growth products I've been using as religiously as a person with severe CFIDS/ME/Fibro can, and will be crushed, I know, if she doesn't see a difference.

BTW:  Having discovered dying of lashes and brows has really made my life a WHOLE lot easier - it eases and lifts my "self" beyond explanation.  Hubby, who takes me there and then runs errands for me between checks as to how I'm doing, doesn't understand why all this makes me feel so much better.  However, he can SEE what it does for my spirit and thus loves the whole adventure - certainly more than I do - and actually gets excited about it all, despite my acting like a grinch the whole way there.  Did I mention that irritating hubby is also the sweetest, albeit delusional, hubby ever?

Back to Lan: at least after she's done with me I have an idea as to where to go to fill in those brows with brow powder and can find my lashes to put mascara on...otherwise all is invisible or non-existent.  And since my eyes are so dry, I can actually get away without the mascara if need be and not scare any children who may cross my path.

Finally, going to the beauty farm is not an easy deal:

First, I have to feel well enough to get out of bed, bathe, put on some makeup, see how awful my hair is and SORT of fix it and then find something (other than a nightgown) to wear which fits my ever-changing body. This is major league for me.  By the time all this is done, because of the sweating, trembling, shaking, almost-passing-out factor, you can imagine me employing the "up, rest; up, rest; up, rest" method forced on me by my cruddy body.  This takes at least two to three hours to get through.  Come on CFIDS'ers, CFS/ME'er's and Fibro's, admit how hard it is to start your life each day, but especially when going out of the house!  And though we all have many of the same problems, we all manage to have different problems also, and so in the end, it's never an easy task.

Furthermore, there's that funny little annoying problem I have with sleep - the BANE of my existence.  My life has no pattern nor any predictability or reliability at all because of the sleep factor.  I never know WHEN I'll fall asleep, IF I'll fall asleep at all, for how long WILL I sleep?  And if I do happen to fall asleep, will it be an hour before I have to get woken up for the "get ready to go routine"?  Am I going to be "sick" that day, as in I'm so sick that I can't stop falling or there are huge ulcers in my mouth or any number of conditions that keep me a hermit?  I absolutely hate it when hubby sees me in the morning and the truth hits me as I see a certain expression on his face: I will not be able to go under any circumstances, I'm just doing that badly that day...no adrenaline will help, no painkillers. After so many years, he, as well as my kids, can read the signs, among them the blue or no-color lips.

People always say to CFIDS'ers, "but you don't look sick!"  We absolutely, positively and indubitably cannot stand those words.  We're sensitive about people believing us, so we all too often feel those words undermine our illness.  Furthermore, it IS an insult because we know that we happen to look like something you stepped into by accident in a cow pasture. We look horrid despite the makeup...often worse than at home without makeup, because we usually look like a marathon runner does at the end of a 25K race - not only are we all sweaty and clammy, but our hair is absolutely wet, precisely because it IS the equivalent of a 25K run for "us."  For you non-jocks out there, imagine how you'd feel after a marathon.  At the finish line line you'd be breathing hard, sweating, legs feeling like jell-o, nauseated and so forth.  That's just a bit of how I feel before I reach the front door to go out.  Now that I think about it, perhaps it's a good thing that we have an hour drive to the salon: it gives my body a chance to rest before the fun really begins!

And finally, you've spent the week before doing absolutely nothing, trying to built up what I call "health credits."  If you don't put away those books lying around your room, you get x amount of health credits.  If you stay away from the garden, if you refrain from taking a bath, washing your hair or your face but so many times in the week before (never in the week before, if I'm being honest about it), you earn another unknown amount of health credits. You're constantly thinking about those darn health credits - or being reminded of them by a family member should you forget - in everything you do.  Normally, I rarely go downstairs to the kitchen, living room, etc., areas, but the week before a doctor's appointment or a beauty adventure, I absolutely NEVER go down there.  I need to save up those health credits.

I'm excited but scared....each and every time.

So, until Saturday, I'm living on tethers, hoping against hope that this week I WILL make it to my hair and beauty appointments.  I'm eating as healthy as I can, trying not to allow anything upset me (ha!), focusing on the positives (sorry, but another ha!), saving up as many health credits as I can and using any other of the other weapons in my arsenal of getting out of the house for the day.

Hopefully, the team can make me look Bea-U-ti-ful! ;)