About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Saturday, June 30, 2012

Malaysia and CFIDS Travel (with 3 beauty tips)

Looking outside my balcony.
What people - friends, family, doctors - don't seem to realize is just how ill we with CFIDS/ME/fibro truly are, and with me, at least, it IS my fault to a certain degree. I don't know about others, but part of it is that I just can't seem to be able to allow anyone to see me at my worst. I just have this strange thing about people seeing me when I'm so ill and looking like death warmed over. In a hotel, for example, I won't even allow housekeeping to come in to change the sheets and towels on my bad days and I am a fanatic about sheets and towels - ask any one of my college roommates!

Not surprisingly, the hallmark of this dreaded disease, post-exertional malaise, has hit me hard, really and truly stepping in, full blast, three days after arriving. The ulcers in my mouth were out in full force even on the first planes and by the time we were in flight from Tokyo to Singapore, it was almost impossible to even swallow water. (Hopefully, I'll soon address this CFIDS/ME/fibro problem in a post.) Now my muscles are aching to the point where I don't even know how to describe the pain. My eyes are burning, red and raw just because...because they ARE! My lips are blue turning to white, and just the thought of moving from the bed to the balcony or bathroom makes me want to cry.

You who have CFIDS/ME/fibro know exactly what I mean. It's not crying like a baby or spoiled brat, nor even the tears of anger or anguish. It's involuntary tears flowing because you know that there is much that needs to be done, though you try to tell yourself that constantly thinking about it will only make things worse and desperately try to convince yourself that somehow things WILL get done. The only chance you really have of recovering from "overdoing it," in order to "overdo" it yet again, to function enough to participate in a huge/important function, is to let go of thoughts of things that need to be done and mellow out. Yet this is almost an impossibility because so many of us are Type-A personalities. And so, Fibro-brain, the partner to pain, excruciating fatigue and all the rest, definitely slips in - in my/this case, the day I started this trip - and like a little terrior won't let go.

I'm in bed, but am I resting? Of course not! In the back of my mind there is a never-ending computer going on saying, "if you do this, you won't be able to do that!" every step of my day and night, constantly recalculating. It's not obsessing, I hasten to add. It is a complete necessity if I'm to survive - but it certainly is tiring.

On the bright side, I hope that I have my fall over and done with. You see, ever-observant hubby has always said, "you've fallen in all the great cities of Europe!" as described in the noted post. Now he can say, "you've fallen in almost every continent!", as described in an earlier post.

Yesterday was devoted to shopping for a dress for me as mother-of-the-groom. Given that my Viking blood coexists with my Mongol blood, it was quite the hunt. I'm almost 5'8" and ugh! - I've gained at least 10 pounds since I left home. Somehow I always think food will cure whatever ails me, and I've been, let's say, doing a lot of curing! Thank heavens I brought quite the selection of shoes with me since I doubt that even Asian drag queens would have feet as quite as large as mine.

But back to the fall. Yes, "the fall" with a deepening of the voice as you say it (Ha!): "The Fall." My son and his bride-to-be were trying to meet up via their cell phones in the mall and so I decided to sit down on a bench. Kaboom! I went crashing onto the floor, somehow miscalculating how long the bench was. My son was so shocked that he just kept talking, offering no help, as if he were watching this on TV instead of in person.

So, add yesterday's intense going out experience to my not having rested enough from the whole getting-here-fiasco with cancelled flights, etc., and I'm just dead.

I sit in my hotel room and am sooo mad at this stupid illness. I want to go see places. I'm in Asia, for heaven's sake, a continent I never expected to visit. With Malaysia I'm in a beautiful corner of the world and there are so many sights to see. Particularly I enjoy seeing how hard this country is working to turn itself from a developing country to a country that wants to be counted in the world.

There are such beautiful sights. Last night I was able to take pictures of a bridge I can see from my balcony. It changes colors every few seconds from red to blue, purple, green, aquamarine. Each district, as you drive through, has its own unique lamppost so the driver always knows which district he's in. What a cool touch!

I know that what always happens will happen here too. Even though I've been to Australia three times, I saw almost nothing. Here too, this will happen.

Don't get me wrong. I am so thrilled to be here. And it allows me to breath easier knowing where my son is, although he works four hours from Kuala Lumpur. Still, I'll have some sort of idea, some frame of reference. Better yet, I'll be able to meet some of his students and colleagues at the wedding. I'll now know who is who when he writes to me to tell me of a funny incident or whatever...I'll now be able to put a face to the name.

And to complete the happiness, hubby was able to reschedule his work so that he could fly here for the wedding, and spend a couple of nights here before heading back!!! Consider me jumping for joy in my mind, though I must admit that when I DID see hubby coming out of the security area into the lobby, I found myself jumping for joy. This is just too big an event to not have the father of my child standing beside me.

At any rate, I just have to figure out how I can trick my body into believing it's up for a wedding. But not to disappoint, I am including a bit of beauty tips:

  • I put on the Omorovicza illuminating moisturizer (no tint) the other day and liked it well enough, but wasn't IN love, though I'll continue to play around with it. I'm seriously considering getting the Laura Mercier illuminated tinted moisturizer. I hadn't realized that there were now two LM tinted moisturizers, the normal one and now the illuminating one. The regular one, which came out ages ago, just did not suit but I think my skin is in better shape now than it was, say 10 years ago, so I'm rethinking the tinted moisturizers since it IS summer. (Granted, because this DD has made it hard for me to make any decision, I might not make a move on that until NEXT summer!)
  • I used my Dr. Jart+ BB cream and loved it. We weren't out in the sun - like an MS patient, my body simply cannot tolerate the heat and sun exposure - but the BB cream went on very nicely and didn't feel heavy, yet evened out my skin tone. And, of course, I'm madly in love with the SPF of 50! The color blended in very nicely.
  • I'm in love with my new Clinique Cream Shaper for eyes. I tightline the brown I use, and it's a more subtle look which makes your eyes pop. For an idea on how this can be accomplished, my pinterest board shows a picture of how it's done here .

I hope everyone out there is doing as best as can be, only better! Till next time!

Wednesday, June 27, 2012

Beauty products and "The Suitcase Test"

When you travel half-way round the world - literally - and realize that you really need to scale down what you're going to carry with you, it makes one realize just which products you really love, rely on, and can't do without. With me, the obvious are Dove soap, which I've used religiously since high school, and Créme de LaMer, which I've used as often as I'm up to it, since at least 1996.

I do always love to experiment with other products, some successfully, some not. Since I've started this year's resolution to look "more human" (darling hubby would quibble about that but he just doesn't get a woman's need and desire to look the best she can and besides, as I believe he's still in love with me, he thinks I look good all the time - gag!), I've tried a lot of new beauty products. I'm trying hard to at least give myself a psychological triumph over the constant battle with CFIDS/ME/fibro. And since I started this blog and it's taken a decided beauty direction (who wants to read about lumbar punctures, migraines, BP regulation problems, endocrinological concerns, etc, right?), I've tried even MORE beauty products.

The interior of the Petronas Towers

So, I thought I'd mention a few products that have become firm favorites of mine, which passed "The Suitcase Test":

Liz Earle Cleanse & Polish Hot Cloth Cleanse:

I've already mentioned this product but I wanted you to know just how much I really do love it. I find that I use it anytime I do not want to think about experimentation and want to go into automatic pilot - usually! - or when I know my face needs some TLC, yet a good scrub. I definitely wanted it on this trip and have used it twice daily since arriving. You apply it to your dry face (that took a bit of getting used to, I must say!) and it's so gentle that you can spread it all through your eye area and it will dissolve all eye makeup. After that, getting rid of anything else on your face is a breeze! A muslin cloth is used to wash off all the mess and as you take it off, the bit of "texture" from the cloth works to gently exfoliate your skin. I took my large bottle with me, not bothering with decanting into a smaller pot...I knew I'd consistently use it and couldn't be bothered with figuring out how much I'd need. It's a bit difficult to find and I've ordered Liz Earle's prize-winning products through the Liz Earle USA website. The Brits have absolutely gorgeous skin, so I must admit I do have a bias toward using British skincare products, but I absolutely think going through the extra bit of trouble of ordering is really worth it. See my review here .

Alpha-H Liquid Gold with Glycolic Acid:

This is part of an Australian line of products that are also worth the trouble of hunting down. The description calls it an "overnight facial in a bottle” and for once the words are true, not hype. It "revitalises, firms and gives radiance in a single application." I find that it evens out the skin tone and since I have a few age spots and very old freckles, this has been really successful in terms of making them appear less prominent and truly making the skin more, well...radiant! I don't use a moisturizer after I apply this to my skin and for some reason my skin will produce just the right amount of moisture needed, all on its own. When I finally (!) got to my hotel room here in KL, the first thing I wanted to do after giving my face a good scrub was to apply the Liquid Gold. I knew it would address the slight dryness and dehydration I had (only "slight" thanks to the DYI facials I gave myself during the flights, as well as drinking tons of water). When I first started using the Liquid Gold, I bought the "beginner's kit," which included a prep that allowed your skin to get used to the glycolic acid gradually, but I think I could have gone straight into it, really. I normally use this every two or three nights, leaving it on overnight. Love it! I haven't found a source I'm enthralled with. I just order from a reputable place when there is a free international shipping promotion. Cultbeauty.com is one such source. (Ah! A rain is coming down. Perhaps I should stick myself out on the balcony for a nice moisturizing mist to work its magic! Whoops! Thunder and lightening: perhaps I'll stay in!)

Phytodefrisant Botanical Hair Relaxing Balm:

This has been around for quite some time and I cannot imagine what I'd do without it. I'm so paranoid about not having it when I get out of bathtub or running out, that I have about four or five tubes of it, stashed in overnight bags, each bathroom and in the back of my hair cabinet where "extras" of any products are kept. Given that I'd read that KL is humid, I was so paranoid about forgetting to take this product that I found that I'd somehow stashed TWO tubes in my luggage. (Fibro-brain, anyone?)

This relaxing balm has not only won countless beauty awards, but like my beloved LaMer, has even been put into at least one hall of fame in order to allow other products to have a chance of winning an award. I smear a bit of it all over my (very short) wet hair and since I started using it about twenty years ago, I have no frizz problems, even when my hair was a bit long. It does have silicone in it*, I believe, or something that makes my scalp itch at times (this is definitely a CFIDS/ME problem, not a "normal" problem, because my scalp area has a tendency to swell up and I then need to take a medication that will bring down the swelling - a normal "water pill" doesn't help). At any rate, I avoid getting it on my scalp, just applying it to my hair, especially the areas that will get wet from sweating; often I look as if I've just gotten out of the shower, my hair is so wet after all the work involved in getting dressed, putting on the minimum of makeup and sunscreen. I can get surprizingly close to the roots with no added problems to the "swollen head" concern (oh, I can just hear the jokes!). It works so well, I don't care WHAT it has in it but luckily, all Phyto products are botanically based. I buy mine at drugstore.com (at the beauty.com part) and it last forever since such a small amount is needed.

I'll be experimenting with cosmetics today, hopefully, as I continue to rest up after this trip and try to build up as much energy as possible for the shopping of an appropriate dress for the wedding, as well the for the wedding itself. I realized I needed to know exactly which cosmetics I'd wear on the big day, no fooling around at the last minute, which robs one of said precious energy. I'll let you know which of my favorites make the cut!

Until then, I hope everyone is feeling as well as can be!

*CORRECTION: It doesn't appear that there is any silicone in the Phyto.

Tuesday, June 26, 2012

A few beauty flying tips from my KL flight.

I used my Elemis bag by Temperley all the way to and from KL... a very "successful" choice!

I'm finally in Kuala Lumpur! It was an incredibly long journey with more than a few things that went topsy turvy - long delays, canceled flights, and rerouting - sounding entirely too much like fiction by the end of it all. There were huge up's and down's but I'll try to spare you the finer points and hit the highlights only.

I'd flown to Chicago on Friday morning and boarded the next plane in time, thanks to wonderful transport people, aka (in my mind, that is), "the wheelchair squad," who were fantastic on every step of the entire trip. After sitting on the tarmac for four hours (I'd already done my DIY facial out of sheer boredom and since my neighbors started talking, it was a fascinating time - very JOLLY, in fact!), the flight was cancelled. I'll just say that I'm glad that *I* didn't have to do the explaining as there was a sea of unhappy passengers, an understatement. There was much drama, including my trying to help a poor Chinese woman who spoke no English, was traveling with some sort of injury, to a mother who was either sick or dying - our sign language was failing us - and no cell phone. We were glued at the hips for a few hours as I tried to contact her family on my cellphone and I think she wanted to share a hotel room since she kept telling everyone we encountered - in sign language, that is - that we were traveling together and I had to explain what was really going on. Helpful I am, but sharing a hotel room, I thought, would have been too much. (She was given her own room, I'm not a heel!) And can you imagine just how much sign language would have been needed when I whipped out all my meds? I'm not sure any kind of language could ever have explained that! Insomnia woman here - me! - managed to fall asleep for an hour or two when someone tapping on my door at 4AM awakened me and then that was it: no way of falling asleep again.

Things started to go a bit sour Saturday morning, when, as I was about to be directed to my gate, I found out that I was going to be sent to KL via Tokyo and Singapore instead of by way of Beijing. I was now on an even longer flight with an extra stop, coming into KL Monday morning. Bear in mind that I was originally to arrive in KL on Saturday night, so I was beginning to think this whole trip would never even begin, especially after sitting on the tarmac for three hours on Saturday. At one point it even looked like they were going to cancel the flight on Saturday, too, when there was a hiccup with the radar, and I seriously considered turning around and flying home, wondering if the stars were trying to tell me something, like "stay at home, you crazy woman!"

I must say, this post is starting to sound suspiciously close to the "What I Did On My Summer Vacation" assignments in grade school we all had each fall, though I don't remember DIY facials and alcohol being part of the equation! Ah yes, the booze! I hasten to add that there was no alcohol on my part, since like most of us with CFIDS/ME/fibro I, too, can't tolerate any alcohol, but my fellow passengers imbibed. However, there were MANY moments when I so wished I were part of the soused crowd! To add to the madness, I was again refused water a few times. I was told I could have as much liquor as I wanted though, but that water took up entirely too much room! Despite having a note from my doctor saying I needed to drink a LOT of water, I did not bring it out, feeling that would have sounded too petty and having learned in Chicago, the hard way, that the airlines did NOT like to be told what to do by doctors, a LONG story I'll spare you.

No sleep, as my English (as in "British" vs. English language, though he did speak English too ) fellow passenger and I spent the twelve-hour flight talking. By the time we arrived in Tokyo those from our flight were so late for the connecting flight to Singapore that everyone on this leg of the journey seemed to be angry and grumpy about too many problems and I saw no one talking to anyone. My swollen feet found relief in the wonderful 180 degree sleeping pod - what bliss!

Finally, after a huge lay-over in Singapore, I luckily discovered that the business lounge had shower facilities and they were wonderful. It absolutely KILLED me that I wasn't able to hit the duty-free shops we passed in the motor car - EVERYTHING was there and in massive amounts and I understand it is THE best shopping airport in the world! But back to the business lounge: beautifully but simply decorated, equipped with first-class products (I remember L'Occitane) I was able to wash my hair, change clothes and put on fresh makeup for the last leg of the journey, less than an hour flight.

What I took away from this part of my trip thus far:

1. Keep the TSA and airlines happy, but don't cheat yourself. I almost disregarded the cardinal rule of having a change of clothing with me. Since I wasn't allowed access to my checked-in luggage once my flight was cancelled, it was a good thing that I'd thrown my change of clothing back into my carry-on bag again at the last moment after trying to taper down how much I carried in order to make the TSA happy, not to mention the airlines. I don't think I'll ever forget deodorant on my carry-on again and since I was afraid of the hassle I might have in carrying a syringe with me, all were packed away when I needed to give myself a shot that night in the hotel, a most unfortunate move.

2. Bring along products whose smell you know and like. This actually goes for all products you'll use on the plane. I was ready to gag from the smell of the facial wipes used on this trip. The facial spray was an unfortunate selection, too, since I had men sitting next to me on each leg of the journey and if *I* thought the smell too floral and old-lady-ish, I can't begin to imagine what *they* thought. In the end I used the wipes and spray as infrequently as possible, which sort of defeated the whole purpose of bringing those products in the first place. I'm going back to my water-in-a-can Evian or Avene on my return flight.

3. Be sure to use tried and true beauty products! I'll always pack my Dove and LaMer in my carry-on from now on, which was a good, though unfortunate, lesson for me. I left the Dove in my checked luggage and since my skin hates any other soap, between the starch and hard water washed linens of the airport hotel and unfamiliar soap, my entire body was abraded, red and sore. I threw in a tiny sample of LaMer cream at the last second and should have stuck by it. The valuable space the other serums occupied was huge and they did not hydrate - thank heavens I finally thought to try my LaMer. Healing began as soon as I remembered it. Bioderma, too, did not disappoint and was a lifesaver.

Finally, a note: I've found a way of posting from my iPad...I hope it works. It's a bit frightening hitting the "publish" button and so, a warning: any craziness in typo's, dropped words, convoluted sentences and grammar (more than the usual, that is) can't be fixed from my end, I'm pretty sure, so apologies in advance. I can see/feel my OCD starting in already! :) Eek!

Friday, June 22, 2012

Three beauty tips as I run off...

When Cabbage Patch dolls were all the rage, building a make-shift home for them . The "little" one I'm flying to see is sitting next to his sister, who helped me get organized and packed.

And I'm on my way out the door in just a couple of hours on my wild adventure to Kuala Lumpur.  I've lost count of how many times I've "yelled" and "screamed" - "I don't know how I'm going to do all of this!" as I tried to do the simplest of things and would break out in a sweat, shaking and so forth.  On the other hand, I try telling myself that the worst part of anything I ever do is getting to and out the door and that's almost accomplished.

Because I'm not sure if I'll be able to post anything while I'm gone - leaving the blog without its mom is a bit frightening - I realized, "Oh wow, I can always make comments in the comments section of this post and on my facebook page (see side for addresses) as well.  And if I get desperate enough, or the separation anxiety gets to be too much, who knows, I may even tweet!

But here are a couple of CFIDS/ME/fibro tips just as I'm heading out the door:

  • I ran into a couple of red and hot areas on my chest doing a trial run yesterday morning and the Green Balm I described ages ago really worked well.  Check this link for my earlier review.
  • I was upset that I wouldn't be able to take my huge pot of Chanel bronzer on board because of the TSA 3-1-1 restrictions, so I put a bit into a tiny pot.  If anyone could be in love with a product, this would be it. I absolutely love the way I can contour with it.  I don't use it as a makeup base, just as a cream bronzer and it blends beautifully.  It can be found here .
  • I was also mourning not being able to take my Bioderma micellar water, but after a sloppy job of putting on mascara, a swipe of a couple of Q-tip moistened with the Bioderma got rid of everything.  I also had a very dry and sensitive area on both cheeks and nothing helped. When I took out the Bioderma to take off everything I'd put on it (serum, etc.) the dryness disappeared. AMAZING!  And so I found room for a decanted tiny bottle of the the Bioderma and it'll be with me on board - if the TSA guys don't get upset with how much I crammed into my 1 quart bag.

Hope everyone stays as healthy as can be!  Must run - well, "run" CFIDS/ME/fibro-style.  :)

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Thursday, June 21, 2012

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

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

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

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

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

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

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

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

  • Clarins HydraQuench Intensive Serum Bi-phase:
Heavy on hyaluronic acid, I'm going to give this HydraQench serum a try, as well as the cream mask.

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

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

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

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

Monday, June 18, 2012

"Asleep: The Forgotten Epidemic..."a medical mystery.

A couple of years ago, I happened upon a lecture on Book TV which broadcasts on C-Span 2 during the weekend.  A relatively young lady (sadly, any woman younger than me is a "young lady") was giving an incredible account of a sleeping epidemic I'd never heard about, nor ever read about before, encephalitis lethargica (EL) literally meaning, "the encephalopathy that makes you sleepy."  Immediately I had to order the book and then after reading it (in one long "sitting") I made one of my doctors read it.  He loved it - and I then ordered it as a Christmas present for my GP and for my neurologist.  Yes, I'm such a wild and crazy gal when I give out Christmas gifts.  I'm pretty sure the latter two didn't read it and it's a shame because had they started reading the book, they wouldn't have been able to put it down.  Actually, perhaps that's exactly why they didn't read it - the time factor!  But, really, how could I resist something like this book when sometimes all I ever crave in life is to sleep?  

And yet, all joking aside - and the joking is about as funny as someone saying to "us," the CFIDS/ME and fibromyalgia people, that they too are always tired and wish that they could also stay in bed all day, "hardy har har!" -  Asleep: The Forgotten Epidemic that Remains One of Medicine's Greatest Mysteries by Molly Caldwell Crosby was riveting for many reasons. On the TV broadcast I watched Crosby deliver a very polished and entertaining "lecture," along with a questions and answer period.  And I admit it's because I suffer from severe insomnia - the opposite of what the "key factor" in this sleeping illness was - that I stopped at the channel.  Yet it was the story that was in and of itself compelling and the way that the book forced the reader to stay glued, once I stared reading the book, was amazing.

This strange and mysterious illness started showing itself around 1916, peaking in 1920, then had a second wave hit in 1924, and it affected as many as 5 million people world-wide, one million of whom died.  The key symptom was a huge sleep, from weeks, to months to even years.  All too often the real victims were the "survivors."  And yes, the movie based on Oliver Sacks' book, Awakenings, touches the teenist tiny bit of this story, picking up where Sacks came into contact with a few of these victims in the 1960's. But though the movie is great, as is Sacks' book, please don't go into this one with that story in mind because this is a completely different kind of read.

The problems were various, from Parkinson's-type symptoms to tics, seizures, slurred speech and huge personality changes - even violence and insanity - and there was a huge "spectrum," to use a word that is so popular today, perhaps even overused.  The illness came out of nowhere, there was no physical trauma that started it, no infections that could be seen or identified.  It started to fade out around 1926, also almost suddenly, though it was scary in that it did pop up here and there over the years.  And one was never really "over" it.

As I read this compelling, often gut-wrenching story, there were many parts that reminded me of the CFIDS/ME saga, with the frustrations of trying to figure out what was going on with these patients, and by what means this was attacking people, whereas other parts of the story fascinated the history-loving part of me. Crosby, for example, captures the spirit, sounds, smells and the history of New York City in that era in ways that had me sigh at her ability to craft a sentence or paragraph.  In fact, her writing was so eloquent, yet so spot on, that I did something I've never felt compelled to do before: I actually googled her in order to see in more depth who had taught her to write so well, document and research so doggedly and to capture her reader and not let him or her go. And Cosby did have a compelling reason to investigate this story: her grandmother came down with this illness in 1929, and though she survived, there were life-long problems.  To add to my admiration of her writing abilities and research devotion, the book is richly multi-layered.  Cosby divides her book around several cases, including J.P. Morgan's wife, who was affected by this malady, and then weaves other stories around them: about WWI, the world-wide pandemic flu that followed on the heels of that war, the technological advances that were made in the 1920's and then the stock market crash and the Depression as a result of it, and, as they used to say in movie trailers, "much, much more!"  

As I read the book, my thoughts were all over the place, sometimes frantically so, and I had to start marking up my hard copy.  Almost all the major events in my life took place in NYC from being born and baptized there, to meeting my husband, working at my first "real" job, marrying, and finally having my first child there.  It's obviously been a huge part of my life, though I didn't grow up in NYC - that sounds odd when you see all the "firsts" in my life that occurred in it, doesn't it?  At any rate, I first started to suspect that there was something definitely wrong with me when I was living in New York and did mention it to various doctors I had to see for normal problems, as well as some pretty weird ones.  And just as I'm fascinated (and frustrated) by the way my brain can't deliver on sleep and that no amount of reading, going to specialists, thinking everything through as to why this is happening to me and failing to find an answer, I'm fascinated too by the opposite problem, why a person can't stay awake.  This book was almost tailor-made for me, I often thought.  

It's sad that the book didn't get to the New York Time bestseller list because there is so much in it for everyone. For example, it shows how much this "sleeping sickness" - as much a misnomer as "Chronic Fatigue" is in its many ways - changed the face of medicine.  Unlike CFIDS/ME, this illness was very famous and infamous.  Indeed, this illness was a huge catalyst for the new field of neurology.  The book is divided into seven chapters, each dealing with a fascinating story of how a certain person was affected and, woven into each case, are incredible stories that just don't stop drawing you in.  I loved the chapter that dealt with J.P. Morgan's wife because it showed how much financing and influence, as well as a big name, are needed to push an illness to the forefront: and yet, even with that the story has been dropped and forgotten.  "Darn it!" I kept saying to myself - or something close to it - "this kind of thing can't happen to 'us'!" though in many ways it has and we keep hitting our heads against walls.  

I also couldn't help wondering if the reason that this story had been forgotten by the medical community at large is because it showed such a failure on their part.  Who likes to live with these glaring mistakes, these huge reminders of the way in which medicine and the body/brain may never be fully understood?  It's not an accusation. It's simply thinking about the nature of the way the mind works. 

In the end, this book also delivered what I absolutely live for in the book world of my life: the story that I can't quite seem to forget, no matter how many books I read, no matter how bad my memory becomes.  I may get details off, forget some of the really interesting things that as I'm reading I think I'll never forget, and then do. But the basic thing just STAYS with me.  Anyone who can still read should read this book: it teaches and entertains on so many levels.  It makes you think...

...and I love to think!

The paperback version is now available at Amazon for $6.00 and no, I don't have any reason to endorse Amazon...I just happened to notice the price on one of my usual journeys through their website:

Friday, June 15, 2012

My eyebrow miniseries: Part 3

My Mally Eyebrow kit.

Just a few moments ago I opened up a box with an order I'd placed a few days prior on one of my favorite drugstore/beauty websites.  I'm always so excited when I receive a package.  It's about the only time, you see, that my poor memory works in my favor: I get to see what the surprise in the box is because heaven forbid I manage to remember something from one day to the next, often one hour to the next.  Receiving a package in the mail reminds me of Christmas, before I learned that there was no Santa.

The surprise was a new mascara that I'll be trying.  There have been several companies now that have come out with mascaras using the new technology of forming a tube around each lash, instead of "painting" mascara on lashes.  I so wanted to try it on immediately but remembered that tomorrow I will (hopefully) be going up to get my hair, brows and lashes done and I don't want to risk any residue on said brows and lashes to interfere with coloring/tinting.  But considering the fact that I often forgo mascara and hope that liner will suffice (it never does) this is a biggie for me. My eyes are always turning red for this reason or that and I've grown tired of mascara as one of the contributing factors to the redness. This latest attempt to find a mascara that I LOVE (as opposed to "love") is an on-going project.

But to continue with the adventures of trying to grow more eyebrow hair and lashes - or trying to deceive the world at large that I DO have them at all....

This past winter I actually started using men's foaming Rogaine.  It, Rogaine, is something I've tried on and off for years, although I'd be embarrassed to tell you the number of cans of just-started Rogaine cans/pump bottles I threw out when we had to move ourselves and everything we owned when vacating the second floor for the remodeling. Actually, the old Rogaines would probably have made a great exhibition of the progress Rogaine has made since it hit the market big-time; there seemed to be new packaging with each "improvement" to the formula.

I think my biggest problem is that I'll use it but then something will happen (a flare, a relapse, a crisis) and when life gets back to "normal," I forget all about it.  We've just started moving back into our bedroom and bath and already, as my life is slipping out of control a bit - OK, more than a bit, but more controllable than what's been the norm in the last two years - I'm finding it hard to remember to take my meds, much less remember to work Rogaine into the needed areas of my head.

However, the Rogaine on my bald spots, as well as my eyebrows, has worked out well.  And since I'll soon be mother of the groom and because I want to look my best in order to not embarrass child number two, I've moved my trip to get my hair done, etc. to now rather than later.  And I can't wait to hear from my stylist if she thinks there's been an improvement since she last saw me a couple of months ago.

Continuing with the brow-growing adventures/sage... after a while, I got a bit lazy with the Rogaine on my eyebrows routine (it DOES take a bit of concentration and focusing, not something a person with CFIDS/ME/fibro has in much abundance) so I ordered one of those eyelash enhancers.  I can see that my brows are a little bit fuller (doesn't take much...I'll never be a "before and after" picture) but whether that's from Rogaine being applied to my head and that some is getting to the brow area because of the chemicals going around, who knows?  Actually, that's a rather frightening thought, isn't it?

I have to admit that I have no idea as to why I chose the "Smartlash" eyelash enhancer over the others on the market. I do know it was from reading one of the beauty columns out there and somehow I felt I could give it a go with the brows.  After seeing that I hadn't grown a third head, I've started using it for its intended purpose, on the eyelashes.  I have noticed that the eyelashes, BTW, are a tiny bit thicker and darker, this despite the fact that I'm easing into the eyelash routine.  There are indeed two reasons for the hesitation.

Somewhere, I'd read that one of the products could change blue or green eyes to brown - and permanently.  Aside from the scary part of putting something so close to your eyes that can change your eye color, I've been hesitant because so much of my identity is tied up in the color of my eyes and I don't really want to mess things up.  If I'm in a great mood or feeling good, my eyes are green, their default color.  The better I feel and the better the mood, the greener the eyes.  If I'm in a lousy mood or very ill, the color changes to blue.  Back in the 80's, I bought green contact lenses, when they first came out in various colors, and my ever-observant hubby didn't realize I'd been wearing those suckers for at least a month.  When I asked him how he could manage to miss this, he answered, most sincerely, "I just thought you were in a great mood this past month."  I'd hate to mess up a system that my family banks on in order to judge how to treat me...gingerly or badly!  (Just kidding about the badly...somewhat?)

Getting back to brows, I've also somehow fallen into the eyebrow "shadow" approach for the past two decades, thinking that the pencils were too harsh and fake - but let me add that I'm not the greatest artist in the world!  Stila has a brow set that I think is rather nice.  My only problem is that my skin tone changes day to day and my hair color changes every time I get it done (or as it grows out!) and I need a bigger selection of colors to choose from.Stila has two colors in each of her pots, one for the lighter side and one for for the darker side of the spectrum of your hair color. However, here too, my blending skills are just not good enough for my satisfaction.

Consequently, when Bobbi Brown came out with her chocolate palette of eyeshadows a few years ago (not brow shadows, but close enough for me!), I snapped that up quickly because of the various shades I could play with.  I've got a few quads too, like Dior and Smashbox, which have brown shades included which I like to experiment with also.

Now Colorscience came out with the cutest, most convenient little brow kit I've ever come across, but the colors do NOT suit me and I'm embarrassed when I think that my second most frequently viewed post is a picture where I'd used the Colorscience.  I can't tell you how often I've wanted to change that lousy picture and wonder if I was on crack the day I posted it - JUST JOKING about the "crack" bit!!!  But I was fooling around with trying to learn how to take a picture of myself that day with my iPad, not keeping in mind that HOW I looked mattered too.  At any rate, if I could repot this compact with tins of colors I like in the right size and shape to fit the "compact," I would. I love the very slim case (and I've had many over the years), with its brushes, one my favorite miniature slant brushes for brows.  I just dislike the color immensely for my skin.  But others may find it suits, especially if there are brow hairs to begin with and only "filling in" is required, not building brows with almost no hairs, that is, having to almost start from scratch. This kit is perfect to throw in your bag.  And because I'm always losing the tiny slant brushes, I often carry the kit with me just for the brush alone.  (I know this makes no sense to the "normal" person out there but to the CFIDS/ME/fibro's I think this is somehow understandable.)

Not too long ago, I saw that Mally had come out with a nice kit, made of fabric, that holds a compact of brown brow color and an ivory highlighter.  It also holds a brush with two different brush heads on either end, and her black pencil eyeliner, which I love - it does not move after it's had a chance to set, though there is enough time to smudge it if you like before it dries completely.  I also like the kit because it can't be lost easily (it's a shiny lime-ish green) and because I can throw in one or two other (small and thin) products.  It's a bit too bulky though, so for something like flying, it most probably won't make it to my carry-on bag, though the jury's still out on that.

I think I still have one more post to do and we'll be finished with the "brow miniseries."  I've found a couple of gems that I'll describe next time.

Until then, I hope you are doing as well as can be and are going to have a great weekend!   Until next time, when, hopefully, I'll be back with great-looking brows!

Thursday, June 14, 2012

Priorities in family, health and beauty...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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Tuesday, June 12, 2012

I DO treasure that which remains behind....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, June 6, 2012

My eyebrow miniseries: Part 2

Teaser: some of the items to be discussed in my next post!

And so, welcome back to my continuing saga of the eyebrow, my "miniseries"!  

I happened to ask my immunologist the other day what exactly causes so many of us with CFIDS/ME to have so much hair loss, and he said that he thinks no one really knows, though stress seems to be the most popular theory. I happen to agree, but that alone can be an entire series, including the fact that it is not "psychological" stress, as too many in the "shrink" world would love to convince us, but the stress(es) of CFIDS/ME/fibro, the immunological and neurological ones, to be more precise.  But on to today's continued topic of eyebrows.  Ah yes, I can tell everyone is waiting with bated breath!

As to why some of us have sparse brows and some of us have full ones...well, that's always boggled my mind, thanks to my mom and my daughter.  My mom and daughter both have beautiful Brooke Shields brows (as well as hair and strong nails) that are often the envy of many and when it comes to cutting hair, they give their hair stylists a complete workout.  I've always looked at their hair and brows and marveled at how people with similar genes can have such different characteristics.  But the hair and brow sparsity I'm experiencing has now reached an entire new low because of CFIDS/ME and even the fibromyalgia.  So, I've given up on "hair envy" and just deal with what I've got, just happy for my mom and daughter.

Consequently, over the past ten years or so, I've been on almost desperate hunt for "help."  I have bought many kits, pencils and my favorite route: eye and brow shadows in colors and finishes/polishes that "help" somewhat. You name it and I've most likely tried it.

I think my desperation reaches its highest heights when I start to seriously think about and then finally talk about and consider the whole tattoo route.  Understand, I think tattoos are a horrid trend and despair that they've become so mainstream.  Hollywood has a LOT of answer for, especially since they started this craze and just as it caught on big time, so many of those in Hollywood began getting their tattoos taken off by means of extremely expensive and often painful laser treatments.  We are going to have an awful lot of ugly looking body parts once sagging strikes that young segment of our population that's been most influenced by this fad.  Shudder: think of the drooping Chinese bits of philosophy that are so precisely embedded into a body part that will soon look more like ragged and misshapen scrolls as opposed to the sweet little straight-lined rectangular paragraphs they start out to be.  No one should use tattoos as a means of decorating the body (sorry if my age is showing in this one aspect of life) but in my case, for all too many reasons, even I have seriously considered getting my eyebrows area tattooed, even seriously considered getting a fake eyeliner effect!  Of course, I would only go to a doctor or to a tattoo artist recommended by a physician and not simply a tattoo parlor on Main Street, USA.  Here are the sorts of things I ponder and which hold me back, or on the other hand, won't leave my mind as a possibility:

  • Do I really want to be stuck with the same kind of brows for the rest of my life?  Brows are like everything else: they change just as fashion changes.
  • Do I really want to mess up my face?  I'm not sure it will be done "right," aesthetically.
  • My hair color never stays the same.  I'm always adding more highlights and lowlights depending on my mood.  Tattooed eyebrows could limit my choices.
  • What ARE the possible health risks, even the ones not yet imagined?
  • I don't have enough problems with my vision?  I should go and risk things even more with tattoos in such a sensitive and crucial area?
I suppose the tattoo thing has really been on my mind because I've actually had a few discussions about this on plane rides, of all places, and I'm not one to do much talking with fellow passengers, knowing it's a pain to have a Chatty Cathy sitting next to you.  However, at least four or five women sitting next to me have filled in their brows or had their eyelids tattooed, or both (yes! what an incredible number, especially considering how rarely I fly!) and couldn't be happier.  What's more, they've all been older than me...close to my mom's age.  Now that is definitely mind-boggling and has given me pause as to why I've not gone this route.  I suspect I'm simply scared my luck wouldn't hold and, besides, I'm still trying to somehow manage to get to some really needed doctor's appointments, so I suppose the whole tattoo thing really is low on my list, even in the investigation category, as I seem to use my brain - when it's not fogged up - for more pressing issues.  But a girl can dream....

On the other hand finding Lan in Pittsburgh has done wonders.  As I've written about before (on March 27 and on April 9) Lan can get every single one of the very few brow hairs I DO have to accept color (for some reason, my brow hairs have a hard time absorbing color) and she has a very good and gentle hand with the hair removal so that I've not had the burns that can lead to the unfortunate double brow scenario described in Part 1 of this "miniseries."  After Lan does my brows I am in "face bliss" for about four weeks.  The brows aren't bad for six weeks, especially if I'm careful as to how much product is used to clean my face, not over-washing and over-scrubbing the brows.  However, I still do need to use pencil or brow shadow to help. The dyeing of brows and the removal of stray brow hairs is just good for a fuller look, a guide to see where to go and to make me feel more human when I don't use makeup, which is most days.  Finally, I might add that sparse brows, for anyone, age you: brows often do get more sparse as we age and this is one reason the eyebrow market has been so successful in recent years.  Unfortunately, the CFIDS/ME people have a lot more "filling in" to do.  

Lately, because of energy and health considerations, I can't run up to Lan often enough.  Since I'm happiest when those lashes are done I have put down finding someone a bit closer to home on my to-do list since getting out of the house (bed!) is getting to be harder and getting to Pittsburgh is almost a journey.  I do worry, however, about how safe anyone else would be.

And so, these are my desperate thoughts and slightly desperate measures for the approach to my almost "non-existent" brows problem.  My next post will deal with the less desperate measures.  That is, unless I remember some other aspects of this subject that needs discussing first...not a stretch considering how multi-faceted beauty is and how difficult it is to achieve, especially for those with chronic medical considerations.

Until next time!   And I hope everyone's feeling as well as can be!