Update: Starting the New Year with a Prayer!

The New Year started auspiciously with me, I'm afraid.  I was too ill to do a "Friday Tidbits" this week.  I was too exhausted and weak, and I couldn't get myself out of bed no matter how much I tried.  Heck, I was having problems just typing on my iPad in bed!

I've several topics I've wanted to write about but have been too sick to go there.  I'm feeling so very "frail" and "fragile," terms I loathe and which I've never applied to myself until just recently.  But the shakes and the shivers come on all day long, giving me a fifteen minute break here and there.   This is without the usual "stuff" of ME/CFS and fibromyalgia, of course.

However, we've had a family crisis come up which seems to make all the other crises going on in our family "small potatoes."  Without getting too specific, our daughter-in law and middle child are expecting a baby, due on February 14.  Because the mother-to-be started running a high BP she needed to be admitted to the hospital.  The latest news is that due to other complications she'll need a C-section and the doctor is going to try to delay the delivery until next week.

I always feel funny asking anyone for prayers or positive thoughts sent out to anyone on my behalf, but I guess this is the sort of thing a first-time grandmother-to-be ends up doing.  The fact that they are literally halfway around the world in Kuala Lumpur, Malaysia isn't helping.  I'm frustrated because I'm too ill to fly out to help - after all, I did manage to go to their wedding in the summer of 2012.

I'm afraid this is all I'm capable of doing at the moment.   Hang in there, baby boy.  Keep strong my dear daughter-in -law.  You're doing a good job, my own baby boy, who is now a man.

As always, I hope everyone is doing their best, only better!   Ciao and paka.

One "Beautiful" Day in the Life of Irina Vladimirovna

Worried and exhausted....

Are you in the same boat as I am in when it comes to your face, body and sweating? Yes, that's right, another one of the "uglies," the sweats. 


You find that you need to be somewhere - be it a doctor's appointment, your son's wedding half-way around the world (ahem), or you simply need to meet with someone in your home for a thousand different reasons. But you have severe CFIDS/ME and/or fibromyalgia so how are you going to accomplish this goal?


You've taken your bath (hallelujah!). If you've thought things through, you feel you might be prepared. You've put out all the paraphernalia needed to get yourself clean and presentable, from washing your hair to washing your face with a couple of facial treatments thrown in - at the very least, hopefully a cleanser that's also exfoliated the skin because we do want to get rid of those nasty dead cells and encourage new cell turn-over.


If you've thought things through and planned, that means you've also thrown a serum of some sort onto your bed BEFORE climbing into the tub because if you'd been thinking clearly before the bath, you'd realize that after your bath, it will be a challenge (huh!) getting from the tub to the bed - you know you will collapse. Forget about towel-drying yourself completely or the wet hair: who cares? You're about dead!


What happens is that, hopefully, you have collapsed on the bed and not on the floor before reaching said bed. The little cheerleader in you is happy, rooting you on! The realist in you is nagging you. But the part of you scarred by society and too many ignorant psychiatrists and psychologists is worse than any military sergeant in basic-training yelling in your face, "you have to get up now! What are you...a wimp?" as you want to simply melt into the bed linens further, into the very mattress.


"No," you want to scream. "I are NOT a wimp!", although secretly you do doubt yourself deep inside because of the messages sent to you even by some CFIDS/ME specialists, who too often do not take into account how different each of our cases are.


You've now spent the vast majority of those precious "health credits" - the ones you'd worked so hard on saving in the previous days, weeks, even a month or two - on the initial part of the ritual. Something within you doesn't allow anyone outside your most intimate circle to see you when you are not at your best, and that most certainly includes those times when you and the cleansing part of your routine are NOT, let's say, "best friends." 


Your hand searches and hopes that you did indeed remember to throw a serum onto the bed, as well as a small towel because you're drenched in sweat. You feel as if you need to stand under the shower in order to wash off the sweat, but you couldn't take a shower to begin with because you have orthostatic intolerance and can't stand up. Forget about the chair in the shower bit: that's just another thing to fall over or off of and get yourself tangled up with, risking not just bruises, bumps but also body parts - as you well know from previous experiences, the hard way. Besides, rinsing off in a shower still will make you sweat all over again...it's the illness, stupid (you tell yourself!).


But you want the serum on your face! After all, your dead skin cells are (hopefully) gone and your face is ready to receive whichever treatment you've decided upon, in my case either a hydrating one or a "radiance" one to get me that special glow. (Eye-roll!)


Until just recently, I had an air conditioning unit stuck in my bedroom window and after I gathered enough strength to drag myself off the bed, I'd turn the a/c on. I'm sure if anyone were outside my window when the temperature outside was 30 degrees or worse, 20 degrees out there - that's below freezing for those of you on the Celsius system - they must have had validation that the family in our house was indeed insane. But naked as a j-bird, I'd stand(ish) in front of that sucker and let it cool my body off from the assault of taking a simple bath.


Ah yes....dried sweat. That's always a treat. But what else can you do?


Now, however, I'm trying to figure out a new system as the a/c unit has been removed and the addition that's my bedroom has been hooked up to the central system. I may try sticking my head in the little fridge in my closet and hope that works. There's the possibility of having a "volunteer slave" (huh! Think hubby or perhaps daughter) handing me cold compresses to cool my body temperature, which oddly enough is still at its usual 95.5.


Over the next two hours, I'll need to stop (lie down in bed), get up, put a bit of make-up on, rest, put a bit more make-up on, rest - you get the drill - over and over again.


Finally, my ordeal is over. The hair is about as good as it's going to get and the "beauty routine" is finished with eyeliner more or less in place - what can I say? I'm a product of my generation in addition to having invisible eyelashes and eyebrows. Hopefully, I've found something in my closet that actually fits and works. Between whatever my real weight may be and body fluid shifts, huge bloating -or miraculously, no bloating - my clothes sizes change drastically - even my shoe size - forcing me to have many different sizes of everything I wear, including shoes. Is it surprising that I live and die by the scale? It gives me a clue as to where to start on the clothes front.


But one final thing keeps going wrong: the sweats. No matter what, I can't keep my head from sweating. I can blow dry my hair throughout, but my scalp starts sweating and just won't stop. My hair frizzes. I start to look as if I've stuck my head under the shower.


I keep up with my make-up, but that, too, keeps sweating. Put on a layer of anything and the exertion makes my face WET! How is it possible to have dehydrated skin and sweating skin both at the same time, I constantly wonder? You envision a person in the middle of the desert, stranded, and you gulp water like crazy to make up for the water lost to perspiring, only to find yourself bloating even more, and the face sweating off any product you put on it.


So it's back to bed, yet again, flopping down and as you stare at the ceiling you try to think, what are you going to do? Your slave (hubby or daughter, sometimes both!) try to give suggestions you've completely forgotten because fibro-brain has set in long ago, big time. You ask how much time you have left until you need to leave the house or simply need to be ready and are told what the time is. You try to hold on to your last bit of patience because you don't care what the darn time is. You can see the clock or your watch perfectly well. If you were able to calculate the time now to the zero hour, the time you need to be ready, there would be no need to have to ask how much more time is left!


You're almost there. You know your hair is not going to get drier - that's a lost cause, but at least your scalp is clean. Your makeup's on, but unfortunately, it's just about to slide off your face.


Forget the shakes - you've long ago learned to live with them. Your "slave" helps you with the bottle of water that you chug down, with a supply of a half dozen more in a bag he/she carries for wherever you're going, and hands you the cane you have a love/hate relationship with. It helps keep you away from a wheelchair, but it IS a defeat and a sign for all to see that you do have a problem.


You walk out the front door, smiling at the world. Your daughter tells you you are better than any Oscar-winning actress because almost no one suspects how ill you are, wondering only why there's bit of a sheen on your face....


And very soon, we'll talk about how to get rid of said sheen, to make you look your best - so healthy, in fact, that it leads people to say those words we hate most - for oh so many reasons - "but you don't look sick!"


Until then, I hope all are feeling the best they can be, only better. Ciao and paka!


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Friday Tidbits: Labor Day Weekend

Back in the day when you couldn't wear white after Labor Day.

It's Labor Day weekend, the unofficial end of summer here in the States.  Yay!  Monday is a federal holiday and I'm ready for some extra time with family.

Holidays are funny.  You can expect so much and get very low when reality hits or you realize that you are feeling cruddy and begin to think that you're wasting a perfectly good three-day weekend.  Or just the stress of it all gets to you.

So, I thought I'd end this week with a list of some of my very favorite things and/or things that I AM so grateful for, ones I perhaps don't think about or verbalize often enough, or things that happen rarely, but when they do....!  My hope is that it gets everyone in the best mood possible and thus increases our enjoyment of this special weekend.  Here we go!

I love it...

• When someone doesn't realize that I'm seriously ill, if at all.
• When I have the ability or opportunity to get someone to smile.

My happy daughter, my good friend and I "do" FAO Schwarz in NYC...

• When I can help someone.
• When I can accomplish anything at all and REALLY realize that I can still be a part of life.
• When I have a day when I can get out of the house, or even out of bed.
• When my pain meds actually work.
• When I see my kids healthy and happy.
• When I have a clean house - so I'm not stressed over what I really want to do, but can't, and can really enjoy my surroundings.

That's all that left of Sarum: and a "happy" demonstration!

I love:

• My friends, near and far.
• My many doctors and other medical professionals who've really understood me and helped me over these many, many years.
• My BFF.
• My hubby - especially when seeing that he's not stressing out over me.
• My kids, period.

Always laughing and making others laugh: that's my daughter.....

• Books.
• Pictures of my friends and family, over the years, and the memories.

Summer get-togethers of kids and kids and kids....

• Flowers.
• Travel.
• Talking to my BFF for too many hours over the phone or via FaceTime until we both get "phone ear."
• Knowing that my BFF knows exactly what I mean.
• Telling or asking hubby JUST one more thing all day long, but especially as he's just about to fall asleep...

"So, what do you think about...."

• Sleep!
• Not having to make a decision.
• People-watching with my BFF, especially at a swanky place which does a tea.

My BFF takes tea at the Ritz in Paris (we didn't actually stay there!)

• Finding yet another coping mechanism for CFIDS, fibromyalgia, migraines and other "inconveniences."
• Dinner around the table on holidays.
• A good meal in bed.
• Laughter!!!

Washington, DC, out on the lawn in front of the Library of Congress.

• Laughing so hard I fall out of bed - which literally happened to me twice in the last two days!

My son always knows how to have fun and how to make people laugh.....

I hope everyone gets to laugh so much this weekend that they ALMOST fall to the floor.   Happy Labor Day weekend!

And as always, I hope all are doing the best they can be, only better.  Ciao and paka!

Pain Management: The Unwanted Stepchild

This afternoon I started a completely different post on a completely different topic,  which developed into something that potentially affects all of us, not just those with CFIDS/CFS/ME and fibromyalgia, but in fact every human in this country, if not the entire industrialized world.  I thought to myself, "what the hey?  Let me go there first."  And the topic?  How to survive in a hospital and what our rights are.  Well, a bit more: as so many of you know me by now, there's always more!

Beginning in 2010, I had what turned into every parent's nightmare: that their "child," no matter the age, is found in a hospital and no one knows what is going on as that child gets sicker and sicker and, several times, comes close to dying.

Now there were a lot of reasons as to why I'd felt I knew my way around a hospital, not the least of which was that I've had more than my share of hospitalizations (there I go again with those pesky understatements!).  But you know, times change and they are not always for the better.

I get upset because we patients are getting an awful lot of doctor-switching and that is a big bugaboo of mine. If you recall the ophthalmologists vs. the optometrist experience in a previous post (described here) it's becoming a real problem.

You can now add to that list of doctor-switching, psychiatrists who are sleep and pain specialists who pose as neurologists, as I saw over and over again at "the major medical center" where my daughter had so many lengthy hospitalizations, complications, procedures and surgeries.  The chronic pain management people were always coming in and pretending they were anything but what they actually were: psychiatrists. To make things worse, they were always in some sort of "secret" war with the acute pain management people, perhaps the war actually causing the right hand to never fully know, nor understand, what the left was doing.

Oh how I came to hate the chronic pain people!  Why, you ask?  Because they would come in disguised as everything but what they purported to be.  They would very quickly give their names and use euphemisms. You'd (OK, I'd) spend half the time trying to get a good look at the regulated tag everyone wore around their neck but of course the darn thing would always be twisted around, completely unreadable. Finally I got the nerve to start asking for their cards as they left, which were given to me in a very put-upon manner, as if I were the unreasonable one, somehow conveniently forgetting that in the center's booklet given out to all, identification by everyone, including physicians, was clearly stated as a requirement - and in bold letters, if I'm not mistaken.   And I'd get upset, because upon receiving the card, I'd see that the person who I thought was a doctor from neurology or pain would be a nurse of some sort, though with a MA or PhD in some murky field I'd yet to have heard of, or a practitioner in a field I've yet to discover, or most often, a psychiatrist who said that he or she was from the neurology department, very much implying that they were neurologists, never ever mentioning psychiatry. The permutations were endless.

During a few hospitalizations, as the pain people came and went - many pain teams, never realizing a team had just been by, nor who the previous five teams that day had been, in addition to many other specialties - I had many questions each day, often during every shift, as someone was ALWAYS dropping the ball, usually many times during each shift.  At first I would say that there were huge cracks in the foundation.  Soon I learned that there was no foundation. Later yet, I learned that they couldn't even keep their vocabulary straight (the reason we all use words and those words have definitions, NO????)  because what they meant by ONE department was actually two departments and for all I know each of those departments were split into many parts.  But the misunderstandings, when I finally got to the point where I demanded answers, basically all went back to that they themselves never even understood the fact that they were using the same words but with different definitions. To illustrate what I mean, imagine the fictitious scenario I've described of a Brit and a Yank get-together about a problem.


-"Would you look in my boot?" asked the Brit.
-"You don't have a boot, you're wearing shoes but do you want..," answers/questions the Yank (who many indeed be a southerner, not a Yankee from the North!)
-"No, my boot," persists the Brit.
-"What???"
-"My car," patiently repeats the Brit, because all Brits are polite.
-"Your boot's in your car?" asks the Yank, puzzled, but decides, what the hey?  "Where did you put it?  What color is it?"
-Brit now looks looks at the Yank suspiciously and answers, "Why it's black!" wondering if all Yanks are so thick or if it's just this particular Yank.
-"Oh, OK," says the Yank, looking for a boot through the car's window and not seeing any boot of any color, wondering why in the world the Brit would want only one as boots do usually come in pairs.
-"What's wrong with you?  It's not IN the car!" cries the Brit, totally frustrated.
-"But you told me....!" answers the Yank, not understanding that a boot to Brits is what we Americans call the trunk - of a car, not an elephant, I hasten to add.

Had my daughter's life not been on the line and had she not been in such pain 24/7 for two years with very little relentlessness, remembering very little of the entire hospitalization periods, the aforementioned scenario would have been amusing.  But we're talking life and sanity here, not boots.

I was frustrated.  I wanted to know who all the people who were coming by actually were, with very loud voices, not using the "indoor voice" they had been taught in kindergarten if at no other time.  Did they think she was mentally handicapped?  Did they think she didn't speak English - and fall into that trap I most despise - if one doesn't understand the language simply yell loudly and the person will suddenly get it all magically!

As time went by, with each hospitalization becoming progressively more serious and more people coming around, I had many questions:

• Who were these people?
• Where were they from?
• What were their names?
• What was his/her position on the pecking order?
• Was that person's plan we'd just spent 20 minutes discussing the last word or would an attending over-ride the orders?  (It happened all the time!)
• Who was the attending?
• Would the attending stop by?
• Had they read over my daughter's chart before coming into her room?  (Answer: never!)

Now granted, the charts were long, due to all the hospitalizations and complications but "whoever" didn't need to run down those charts to some dark and damp basement.  They simply needed to look in the d*mned computer that the "major medical center" had invested many, many millions of dollars into.   Besides, one of the first things taught in medical school - after treating your nurses like gold - is to take a history and learn as much as you can from the chart. Rotations 101.

With each hospitalization, I'd come home steamed, exhausted not just physically, but emotionally as well.   As I lay in bed 24/7 trying to recover enough for the next hospital crisis in order to go with my daughter again in order to be by her side 24/7, I'd make plans as to how we could circumvent the problems we'd encountered. At every turn I wanted a positive experience, not a negative one.  The body needs and craves positivity in order to heal.  It cannot endure more tears, be they of frustration, be they of pain, be they of fear, whatever.  It was NOT a good situation, but short of going to the Mayo Clinic, we were in the only other place to be.  Besides, how much better, our thinking went, would the Mayo be if this place was just the same as the Mayo, down to so many of the doctors having trained there and vice versa?

I finally got to the point where I tried to write down the person's name in a book as they came in.  That didn't work very long as we had up to 5-12 doctors and their teams come by on some days.  Furthermore, the teams were constantly changing, especially once she got to the surgical building and not the medicine building.

My first break-through: embarrassing.  I'd left the room after who knows which doctor number had just "spoken" to my hubby, daughter, one son and me.  In order to not allow my daughter to see my tears when I saw that hubby's mouth had dropped open when he saw that things were much, much worse than anything I'd described, frustration-wise, I went to my usual "cry area" where no one could see me.  But in coming back a half hour later, with red eyes (and snot probably running down, not to mention the mascara!) two nurses at the huge hub, "everyone's station," asked if they could help. I told them, "no, thank you" several times, not trusting myself.  After a few of those "no's," however, I asked for the name and phone number of the CEO of the place, which they gave me and asked if they could help in any way.  Oh, they knew, trust me, they knew what the problem was.  And I think everyone regretted THAT question.

I then went into a very controlled but unstoppable tirade that only a mother who is scared to death of what is happening to her child is capable of.  I don't know if anyone remembers the old commercial, "When EF Hutton talks, people listen," and everyone in the commerical stops in mid-sentence, mid-step, etc.?

We had that moment.  Every attending at a computer, every Doc Jr., every nurse, every aide, everyone who was at the station, at least 30 souls, stopped mid-step, mid-sentence - you could almost hear the proverbial pin drop - and listened as I gave a synopsis, in a rather trembling but almost-soft voice, of all the problems we'd had and NAMED some of the people who had either lied to us, misrepresented themselves, given us misinformation, or gone back on a promise made.  One of my lines was that I was starting to feel as if we were all car sales people, buyers and sellers alike, each just trying to make the best bargain, in addition to a H*LL of a lot of other things which are a bit too personal to disclose here, but really popped open their eyes.  I really don't think anyone had ever spoken to them like that before, too intimidated.  In fact, many months later, nurses were stunned that I didn't fear anyone and asked me about it, wondered about it.  Why?  Because I feared the illness and nothing else mattered but that monster!

Whatever I said, it took at least a half hour: no one DARED stop me after they'd started it.  (Do I sound like I myself am in a school yard?  Maybe!)  "Baldy," my "name" for the doctor who'd caused my melt-down returned - and mind you, the name was not a disparagement - after all, I too am follicularly-challenged, but we always needed a way to distinguish one person from another in the crowds of people coming and going.   Everyone had staring at his back as I gave my "account" of all the pain my daughter was going through and he came back to the room and meekly discussed everything we had wanted just an hour before, needed and tried to do before the tirade.  Attitude change anyone???   And he must have ended up red-flagged her file somehow (writing "deranged mother" perhaps?) because the problems ceased for two days - bliss!  We could actually all concentrate on her illness.  It was all we needed and what my daughter was due.  And it lasted until she needed that emergency surgery.

And the emergency surgery highlights another aspect of this whole situation and this hits close to those of us with the DD.  Just as she was about to be sent home, yet again, my hubby called her attending from home (after I called sobbing to inform him of this latest development) and said that he simply would not allow her to come home.  By this point, only six weeks since that first day of my driving her to the ER ("Mom, are you SURE you're not going to crash the car?" - this despite it being only a 10-minute drive, but understandable because I hadn't driven in about ten years).   She'd been hospitalized around 5 times, then sent home, only to return back to the ER and a hospitalization a couple of days later.  

There was, hubby insisted to the attending, something deinitely wrong and they were going to find it because she could not continue to be a human yoyo and furthermore, we knew her warts and all (99% good, just a few tiny warts!) and one could count on her having a high pain threshold.  It was hubby's finest hour, in my eyes, especially because when a final test was run yet again for 20th or so time, and as I was actually starting to pack her bags for the ride home, the radiologist called up to the floor in a complete panic: THIS time they found a newly-formed perforation in the colon which had developed overnight and you can bet that at that point everyone started hopping as they prepared her as quickly as possible for the unexpected emergency surgery.  

And I do want to make it perfectly clear her surgeon was a genius, talented, kind, compassionate and what one could only pray for, checking on her twice a day every single day she was at the "major medical center," from the very first day, even as we all still held out hope that it would not develop into a surgical situation. This is definitely NOT willy-nilly doctor-bashing or hospital-bashing at all, simply presenting the way it is.

So, the reason for this tale, this painful rehash of what our daughter went through?  This was a situation that was cut and dry: you see a completely diseased colon and you could then deal with it.

However, we, those of us with the DD, with the invisible illnesses, show little.

And this treatment, which my daughter had to deal with along the entire way, even after surgeries and between surgeries, highlights how lightly the pain issues were taken. Instead of the true monster, that of her vicious atypical hybrid never-to-have-been-seen before Crohn's/ulcerative colitis, a real killer which even included a sudden bout of pancreatitis, the aspect of her health which got all the attention was pain.  Pain is EASY, folks!  It is known.  It is a matter of finding a doctor who has the chutzpah to make the calls.

And so, this is a very real and true example of how we patients must continue to insist on our rights, as well as expect the respect that the doctors listen to us - if we treat them with respect in return - and that we must know who that person we're dealing with is, what his role is, what his pecking order is.

My daughter was considered a drama queen because she came in with pain, a lot of it, brought on quickly, this despite the fact that she'd lost 45 pounds in 25 days - a documented part of her hospital record, not a part of an oral history given by her mom or dad.  She was in and out of hospitals several times before her wonderful local GI realized that this was serious business and transferred her in the middle of the night, using up favors to get her there, knowing exactly what would happen, in fact telling me what would happen as I pleaded with him that NO! this would and could not happen to my baby, please!  

To add to the pluses which we had in spades, and, which in the end well outnumbered for the most part the really, really bad luck she had along each stage of this monstrous illness, they even happened to have a major international conference on GI diseases there during one of her stays.  I later learned that her physicians curb-sided with their international colleagues in order to find out what others thought was going on - a case so unusual that no one had seen the kind of progression her sudden onset had taken, the atypical hybrid she was presenting.  It was a mess.  But the GI people worked it!

However, the pain management people, were, quite frankly, a joke.  Why?   First, because pain is simply not "sexy" in terms of bragging rights, nor in bringing in the money/funding.

Secondly, and perhaps most importantly, how does one see pain?  How does one assess an invisible illness?

At any rate, this is something I've been thinking about today.  OK, stewing about, now that I've written about it.  The wounds are barely scabs and I'm not sure they'll ever heal over because...heck my daughter almost died and we were all praying that she would somehow survive: on top of dealing with a lot poop that should never ever have been a problem, much less a problem from one hour to the next for the most part.

As someone tweeted not too long ago (there ARE good things about twitter: who knew?) - acute problems are well done in this country.  Unfortunately, chronic conditions, not so much.  This is something good to think about as well as good to keep in mind if it's your misfortune to end up in a hospital.  In the meanwhile, I hope these issues and thoughts help you further understand your rights as a patient.

And finally, I hope all are doing as well as can be, only better!  Ciao and paka!

Friday Tidbits

Victory!

Breaking news: the winner of the Followers Giveaway - which is to celebrate the six-month anniversary of my blog! - is "M," aka Maggie.  Maggie: congrats and please let me know if my message doesn't get through to you regarding where to mail the kit to.

And a huge thanks to all for putting up with my reminders!

I'm glad I found another picture for the top of the post: what in the world was I thinking when I put up that ugly hydrating mask monstrosity yesterday???   It will haunt me forever now!

Last night my daughter came by to tell me all about the first day back to school with the kids and I can't tell you how much we all laughed.  Trust me when I say that I've never laughed so much in my life and we are a laughing family so that's saying an awful lot!  There were parts of my body moving around that I had no idea existed.  We watched things on YouTube that had us clinching our stomachs and then got rather naughty and  had fast food - I think I was celebrating the hypothyroidism in some sort of strange way.  Again: fibro-logic.  We debated how we would pull the names out of the hat.  

In the end, I think subtext was all: it was all about just being in a fantastic moment for all of us and we were happy to use any excuse to celebrate life and not worry about anything for a little while as we later tried to watch TV, and kept rewinding because no one could go for more than 30 seconds without coming up with something that would start the laughter again.  I think it'll be one of those moments that you remember forever: it was just that good.

And those are the sort of things one lives for, no matter what your health, no matter what your problems.

Now I'm crawling back into bed - it was a bad night, after all the merriment and junk food, hence the delay.  But all so worth it!

Happy Weekend everyone.  I hope everyone's feeling their best, only better.  Ciao and paka!

                                                               *************

(Just for legal purposes, I'm adding that this photo is copyrighted.  Please do not reprint!)

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

Petronas Towers in Kuala Lumpur 

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


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


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

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

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

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


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


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

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

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


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


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

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

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

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!

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!

Priorities in family, health and beauty...

My "little boy" is getting married!

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


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

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


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


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


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


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


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


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


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


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


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


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


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

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


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


Help???!!??


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



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