Happy Halloween!

I think it's about time for a light post today, a departure from the CFIDS/ME/CFS, fibro and all its myriad of problems. I've already had a huge fall today and managed to leave a lot of blood behind on the carpeting, suddenly seeing the wisdom of my surgeon, "Dr. Hunk" (you just knew I had to add that part, of course!) and since I had another approximately ten minor falls before and after that, I thought, perhaps the fellow knew what he was talking about when he put me on strict bed rest (imagine that! JOKE!)  

Anyway, since it's Halloween today, I thought I'd go to my favorite place, the past, and just talk a bit about this very strange custom we've developed in the US, Canada and Great Britain and several other European countries, as well as a few Asian ones.  Forgive me if there are other countries out there who celebrate - I'd love to hear about it if so!

Halloween had a funny start in my family.   Growing up, I had just gone to kindergarten in mid-September with no English when I started, but by October, I thought that I had enough of a vocabulary when I understood that we children were to go around that day (first mistake!) ringing doorbells for Halloween and presto!, we would receive candy for no reason whatsoever.  Of course, given my one month plus a week of English and having just turned 5 years old less than two weeks before, a bit was lost in translation, as they would say.

I just love this picture because it sums up the way my daughter was /is always looking out after the boys,  a real maternal person, just like her mom!

So, as soon as I arrived home from school I made another calculated escape - my poor mom: I was always so gutsy and/or adventurous or just plain crazy/imaginative! - and went "trick or treating" on my own without mom but dragging my poor younger brother with me, he who had a love/hate feeling about all the "adventures" I'd force onto him.  I thought that I was fully prepared, since I knew how to say the magic words after much practice in school that morning with "trick or treat" - or "trrriiiiik urrrr trreeet!" as the words sounded coming from my mouth.  Mistake number two: what I hadn't realized was that no one was trick or treating at 1:30  in the afternoon, nor were they using the front of their school dresses as a big bag to put candy into.  

Neighborhoods were true neighborhood back in the day (sort of like the little one we live in now, which is famous for its Norman Rockwell feel) and the front of my dress, with slip showing, was full of candy by the time my mother found me/us a block away from home - a HUGE breaking of the rules - I thought of it as "stretching" of the rules and I also strongly felt it WAS Halloween after all.  Heaven knows, my just turned 5 years-old mind said that mom was just too much of a foreigner to grasp the importance of the situation and the importance of Halloween!   My mom proceeded to lecture me the whole way home, angry as a hornet when really just scared and relieved  that I was alive, of course, while I was exasperated since I hadn't crossed any streets, after all!   Once we were home she dressed me as a gypsy, however, and miraculously she took me trick or treat to my heart's content, with little brother in tow.

HOWEVER: and there's always a HOWEVER when it comes to my mom.  The "old" European dentist was completely against all sugar.  She thought we were already "spoiled Americans" because we ate soooo much sugar.  Yeah: HUGE amounts.  Let's see, a piece of cake for my brother's birthday, my birthday, my mom's and my dad's.   Then there was always a bit of chocolate for Easter and Christmas and the couple of times a year someone would slip us a tiny piece of Russian candy.  Oh yeah.  We were sooooo spoiled!  I was shocked when I married hubs: he expected dessert every night. Dessert?  Was he kidding me?  That was for holidays only!  Talk about culture shock!   

But getting back to my mom: she would let us have about two pieces of candy and the rest would mysteriously disappear, a piece or two appearing only once or twice each year (and very stale by then!) as a reward for good behavior, good grades, or learning an EXTRA Russian poem.  Yep, my mom.  That rebellious soul!

At any rate, unfortunately - or fortunately, depending on how you look at it - there are no pictures remaining of our Halloweens growing up.  They would truly be priceless.  But I do have my kids' pictures and of course, I had to put some of those up!   Just be thankful you're only getting three!   The rest are in boxes that need organizing: a huge project that I'm trying to work on but things keep getting in the way!

I most certainly hope that those who live in the areas affected by Hurricane Sandy are doing all right.   We've had high winds and lots of rain with threats of snow (it snowed south of us) with a huge tree limb falling on one of our cars but we have had no electrical outages, just "almost" outages.   I do hope everyone is feeling the best they possibly can be, only better.  Ciao and paka!

Happy Halloween, everyone.   I hear hubs downstairs and it is endless kids coming to the door, just as it should be!  

P*ssed OFF!!!!

Edward Munch's "The Scream": Note the two men in the background: the two disinterested parties!

Today I happened upon yet another article about CFS and/or vs. ME and let me tell you it hurt - badly.  I am so damn tired of all the psycho-babble I've had to put up with for 38 years and frankly I'm p*ssed.  However, if I'm truly honest, I'm mostly hurt.  It just feels more demeaning to admit that I'm hurt, since it takes away my power - or what's left of it, that is -it makes me feel vulnerable and one thing I've never been is "vulnerable." 

I'm a strong woman whose family survived Lenin, Stalin and Hitler.  Try living with those genes and DNA!  For background, just to show you what "we" are made  of, in 1932 when 10 million Ukrainians died from the Stalin-induced famine, our family made it.  So, you think a bit of psychology is going to make me sick?  Our huge amount of hectares gifted by Catherine the Great was taken away - for the infamous "collective farms," or "kolkhozy" - and the family was shipped in cattle cars to Siberia, but we endured.  

Given this sort of background, what some sort of unhappiness is going to ruin my health?  My mom had a swollen belly from starvation for a year, suffered malaria for seven years, worked in a German forced labor (slave labor) camp during the end of WW ll and some sort of psychology/psychiatry is going to hurt my health?  I was raised on daily freshly squeezed carrot juice each morning (don't ask!), hot porridge, fresh soup, meat and veggies every single day until I left for college, but for two wonderful years in boarding schools, and I'm going to get sick because of some stupid psychological reasons?  We had a strong community.  I went to Russian Orthodox camp each year for the experience and the wonderful Catskills Mountains.

I hate it when the whole psycho-babble is brought out.  Nothing, and I mean NOTHING, could be further from the truth.

When I got sick in 1975, I was very thin, too thin.  I also had very little money so I finished my BA in English literature in three years and one quarter, quite the feat, but because we paid by the quarter, not the credit hour, I felt I had to do it that way.  Almost everyone of my fellow campers were high achievers, typical type-A personalities who ended up working prestigious jobs such as translators for the joint US/USSR space programs, top translators for US presidents, professors at ivy league schools.

I took such heavy loads that I had to get special permission from the dean.  I also had to take all heavy reading and writing courses towards that end because I started out as a math major and had other courses to make up for that deficit as I finished my BA.

But my days at university were the happiest of my life up to that time.  I loved my "uni."  I absolutely thrived there.  I felt as if I had friends from all sorts of fields and when I started my Master's and met one of my best friends in grad school, she marveled that I knew "everyone" on campus.  I didn't, of course, but crossing the drill field was often quite a social event because I always knew quite a few people. 

I got on very well with my profs, one of whom is still a great friend to this day.  In fact, I brought my fiancé down to meet him and got "Papa Squires'" OK on marrying the guy.  It was not an easy-peasy interview, poor hubs.

So, when I got sick in grad school it was because of reasons that had to do with finishing my Master's while simultaneously writing papers, doing original research, writing my Master's thesis and reading ten novels a week, reading critical analyses of the works I read, and often writing papers on the novels, as well as teaching two freshman English courses, and grading approximately six papers each quarter (with huge corrections and suggestions along with conferences) for about 30 kids per class.  

Then I got sick in March of 1975 but as soon as my mom could get me well enough in April, my friends all pitched in to help me study for my Master's Oral's, the dreaded two-hour exam with several professors who could ask me anything at all to do with any period of British or American literature (from minutiae such as obscure quotes and dates to my take on huge literary overviews) as well as the history of the two nations (with a tiny bit of French history thrown in, given the impact of the French revolution on British and American literature).  All this with only a can of tuna each day, with 2 teaspoons of mayo mixed in and 2 saltine crackers.

People commented about my weight and I loved it.  Skinny was in, maybe even more so then than now.

Another "mistake" I made was my lack of sleep.  My final year I lived on 2-4 hours of sleep a night and was famous for my all-nighters.  However, what will always stick out in my mind is Thanksgiving week when I couldn't make the 12-hour drive home and stayed at school to finish as much work as possible for the quarter.  That week I survived on 2-4 hours TOTAL for 7 days and nights.  Nuts?  Maybe and probably, looking back, but it was a "no pain, no gain era."   Furthermore, I had always been driven and determined.

But happy?  I was in absolute 7th heaven.  I was able to get my BA and my Masters in just 5 years total - which should have taken me 7 or more years - all while teaching too.  The only downside was that after the flu (six weeks and going back way too soon but I was so determined!) I was suddenly having trouble recovering my stamina.  I couldn't do what I did before.  I even ended up in the hospital that summer (at my mom's home in NJ) with a bad case of colitis from all the antibiotics I had to take, because all my secondary infections had secondary infections.

But I swear: If I EVER again come close to a medical professional/specialist who SHOULD know better who DARES to imply that anything was psychological or psychiatric to my illness, I may have to b*tch-slap him or her.  And I don't give a flying "F" if I'm jailed for it: it might be the only advocacy I can see myself doing at this stage in my life!  Psychological factors can be nothing further from the truth.  

Shortly thereafter, (that is, after receiving my MA), I met my hubby and I knew the moment I laid eyes on him, 38 years ago if anyone is counting, on an unwanted "blind date" that we would marry ("Aw sh*t, this is what I've been waiting for all my life?!?" is what ran through my head as I laid eyes on him - I so was NOT looking for marriage but wanted my career).   Yet within a month we were making wedding plans.  Two days later I started working at another university a few states away from NY, started my PhD, something I'd wanted all my life.  

However, I knew that I couldn't handle a long-distance romance, teaching, and working on my final degree, though ironically, I had very little time to finish my PhD.  For some reason, all my credits were applied towards my PhD and since my Master's thesis was original, I had to just fill it out a bit.  But going back to school wasn't working.  I was happy but I was too sick.  I had a good friend who would occasionally con me into playing racket ball with him but I couldn't go but five or ten minutes without falling.  I soooo loved going to school.  I was making friends and I had my old friends from camp at church, much to my joy, plus my married BFF lived in the area.  

Instead Lady Luck came around when I decided I would stop after one semester.  I got two jobs in prestigious publishing houses in NYC, right on 5th Avenue.  People fought for or only dreamed of these kinds of jobs and then in the mailrooms (as I'd have been happy to get a job there just to get my foot in the door).  Scribner's and Norton's?  OMG!  But I arrived in NYC with glowing recommendations and immediately found a job with an editor who spent most of his time telling me stories about Franklin Roosevelt, the Kennedy's and even Svetlana Alliluyeva, Stalin's daughter: that was the sort of family he came from.  

When his assistant came back after almost 3 months of medical leave, I already had a job lined up in trade sales at Scribner's where I made decisions as to which books got reprinted and how many copies.  Those were pretty major publishing houses!  They were something I couldn't have imagined in my wildest dreams, the home of Hemingway and Fitzgerald in the case of Scribner's, just to name two greats.  I eventually had three wonderful children and my hubby is a professional.  What more can/could a girl ask for?

No, my real nightmare began only once I started to complain to doctors that there was definitely something wrong with me.  Then the "psychological sh*t" aspects of my health started to come into question.  But they were so very wrong.   Very wrong.  Things were great.  "So, up your's," ANYONE who wants to take it up with me!  I'm game!  MORE than GAME!

At this point, I can safely say, I know MORE than most frigging so-called specialists.  Want a fight, an argument?  You have NO idea whom you are dealing with and who I have on my side as the experts, so step down and shut the "F" up!   Stop torturing the kids who are coming up now, a third generation, for God's sake!

Shame on you that you guys never had the nerve to stop or truly investigate the criminal misappropriations of the very few funds the NIH had to research CFIDS.  Shame on the CDC guys who went out to Incline Village to investigate the breakout of a "new" disease and spent their time skiing instead.  And shame on some of the so-called specialists out there who are, frankly, media whores.

That's how I see it and that's 38 years of crap that I've put up with which has done nothing, but allowed a third generation to now be just as sick as I got back in 1975.  For heaven's sake, 15-year olds are now getting sick!  THAT IS JUST UNJUSTIFIABLE AND WORSE!!!!   It's criminal!

Yes, I'm all for breast cancer awareness and research.  But perhaps it's time to put some of those dollars into CFIDS and fibro.  The three leading causes of death for CFIDS?  Cancer, heart disease and suicide.   Funny, how the government doesn't even keep track of the suicide rate.  And the suicide is NOT psychological.  It's the pain and suffering that can't be tolerated any longer.  Make no mistake: the treatment by the so-called specialists is also killing them/us.

There's an expression, "they kill horses, don't they?"  Trust me.  We are suffering MUCH more than horses!!!

Guess Who the Idiots ARE: The NIH?

(Did you enjoy this post?  Subscribe to my blog and you'll never miss anything again.  It's easy: see the directions on the right-hand corner of this page.  And BTW: I'll never sell, share nor rent your contact information.  I don't even know where to find that info, so that's a firm promise!)

Friday Tidbits: ER tips

Oh yes!  Today is Friday, the day of the week when it seems that IF we're going to get sick, it'll most definitely be after 3pm (though, unfortunately, usually at 5pm), just as doctor's offices are closing for the weekend.  Tell me you haven't experienced this at least 10 times in your life, especially if you're a mom with a gang of kids who bring home all but the seven plagues of Egypt into your home.  Huh?  I thought so...!   And having CFIDS/ME/CFS and fibro or any chronic illness seems to bring us to the ER all too often.

Given that last night it was my (adult) daughter's turn to grace our local ER with her presence (she works with kids so she too brings home all sorts of fun germs and viruses) - though not on a Friday night, thankfully - I thought I'd list a few "helpful hints" about ER visits in general.  I swear, these last few years our family alone seems to be keeping the medical industry in our area in business single-handedly, with little exaggeration.  I'd love to relinquish THAT title!   Really and truly, contrary to all indications, we're normally a "disgustingly" healthy family, with the one notable exception being me. I've taken to trying to remember if I'd accidentally broken any mirrors in the last few years and one does come to mind but surely it's been seven years by now!  Oh well.  It is what it is.

And so onwards with my ER tidbits:

• If you live in an area where you have more than one ER, I think it's preferable to go to one consistently, if at all possible.  At the risk of making our family sound weirder than ever, there really is a certain feeling of "comfort" and "coming home" when you go through those doors and the hospital personnel recognizes you. Suddenly you're a person and not a statistic or a number, an important distinction if you're a "legitimate" patient who has serious problems which are already recognized by the staff.  
• If you go often enough, a box of chocolate or some flowers sent to the department at a later date goes a long way in the treatment in coming months (or days) because staff remember and are touched.  After all, who ever thinks to remember the ER personnel, and yet there they are, working to save our lives, often under the most disgusting conditions.  A token gift just shows them that the staff is not simply numbers but people too.
• It's not always possible to go to the same hospital ER because your doctor may decide to admit in only one hospital, but make sure you know which hospital(s) all of your doctors admit their patients and go from there.  I always feel knowledge is power and every hospital has it's own idiosyncrasies and rules.  (If you're a reader, I recommend The Man Who Couldn't Eat by Jon Reiner, and the screw-up with his Crohn's Disease that was messed up because of...well, read the book.  It's surprisingly funny and if you're into food or NYC, you'll especially love it!  It's also available at Amazon at a bargain price.)

• Try to be distinctive in some way, but in a very nice way!  Being recognized by ER staff (ie, making you a human and not a number) can also extend to something silly, though memorable, like silly socks or funny undies; girls, think cute boxers (thongs are a dime a dozen, I'm afraid, and sort of a turn-off, giving off the wrong vibe - you're going to an ER, not a "gentleman's club"!)  My daughter loves to buy wild Betsey Johnson socks at TJ Maxx and somehow seemed to always have a pair of them on whenever she was run to the ER.  The staff learned who she was long before "her time" simply because they wanted to see the latest pair of crazy but cute socks.
• Bring a list of the meds that you take, please!  It was a rookie mistake on my part that we forgot to bring a list during my ER run and subsequent surgery two weeks ago and then proceeded to forget to mention one of my scores of meds. Unfortunately, after surgery, I really needed that forgotten medication.   Furthermore, if you're admitted: 1) ask your attending if you'll be able to continue taking all medications; 2) ask if there is any med you should bring from home.  In my case, we didn't realize that we should have brought my own thyroid med (good to know now) but to be fair who could have realistically predicted such a rare reaction such as my hives, itchy skin and rashes suddenly appearing?  Also, the only way to get my Adult Growth Hormone is by courier from the insurance company, so that is always brought to the hospital and locked up in a refrigerated case.
• Between one med forgotten to be mentioned and a second checked off the list by my doctor AND NOT BEING INFORMED ABOUT THE CHANGE BY HIM makes me feel that next time I'm in the hospital I may ask for someone else who may cover my regular GP.  However, when I next see my GP, I am most definitely going to discuss this with him.  I like to be included in my care if I'm conscious - just a bit of a quirk with me, I suppose!  I should also not be so "uncomfortable" in the hospital (understatement) that I end up begging my attending to allow me to go home with the result being that I ended up being rushed back to the ER by ambulance within less than 24 hrs, dying and on the "iffy" list for a week with my surgery last year.
• Point: you must have good communication with your doctor - sort of like with Dr. He's-A-Hunk!, who sat on my bed, invaded my space and looked me in the eyes while explaining everything to the nth degree.
• If you do have a Doctor Hunk, or are worried that you may not remember things told you, ask your doctor if you can tape the important points of conversation or have a friend or family member with you who can help out as your patient advocate.  Some might mind being recorded, but others might not.  I think it wouldn't hurt to try to ask if you add that a patient retains only 10% of any conversation.  Heck, I know some doctors who would consider being recorded as the proof of what their Mothers always told or treated them as - that they were indeed the "Second Coming," if not the "Original."  Actually, I'd probably run in the opposite direction if I saw that attitude!
• And as with all things, trust your instincts!  If you think something is off, question it or ask for someone else to see you.  Talk to the charge nurse or whoever is in a position of responsibility for the ER running smoothly.  This is something I never for a moment considered doing, being so sure the system is correct and was shocked when I heard my daughter doing so - and she was so right!  Don't start a "p*ssing contest" or wait until things get too out of hand and no one will be able to unravel the mess.  On the other hand, don't complain if you don't like the color of your doctor's shirt, either.  Don't forget how difficult we are to treat.  But if the doctor starts putting you in the psychiatric or psychological wastebasket, it may be time to see if things can't be changed.  So, if things are off, when the little hairs on the back of your head stand up, THEN quietly ask for someone in charge.  And don't forget that you catch more flies with honey than you can with vinegar!  
• One final warning, to be used sparingly.  If the ER is stalling to get you to the back rooms, you may have to do some creative thinking.  Our daughter was told to be rushed to the ER at the "major medical center" and that from there she would be taken straight to the floor that dealt with her health problems.  Because time was of the essence we were there in less than 3 hours, "flying" the entire way.  We then proceeded to wait for 4 hours to have her seen.  Attitude was horrid by all personnel, especially in an empty ER.  Later other patients arrived and left.  Nothing we said would help, including begging them to call where her doctors were waiting for her.  We should have called an ambulance to drive her to the ER but because she was in such grave danger, we felt we couldn't wait for the ambulance.  I was about to go outside and call for an ambulance, but an ambulance is not allowed to come within x-amount of space of a hospital for legal reasons (more like "agreed upon reasons," if you ask people in the know who will "talk").  So, if you have a critical condition and drive yourself to the hospital, you are doing yourself a disservice.  The wait almost killed my daughter (you should have seen the dropping of everything once they looked at my daughter and how many doctors were suddenly working on her as the word, "lawsuit," was obvious on everyone's face).  Because of this wait, it caused her to stay in the hospital an extra two weeks, making us eat the worst yet best Thanksgiving dinner around her bed, cringing at the food, yet oh so happy she was alive.  However, she then had complications for the next year which may very well have stemmed from this unforgivable delay.  

And on that note, I wish everyone a wonderful weekend with all feeling their very best, only better!  Ciao and paka!

CC Creams: the Newest Kid on the Block

Well, bless my soul!  I couldn't believe it when I read that there is a "new kid" on the cosmetics' block, with ten new additional ones becoming available in the next week or so - or so rumor by the beauty industry has it.  What caught my attention is the name: get this, it's a CC cream,  after the name "Color Correction Cream," "Color Control Cream," or as Chanel calls it, a "Complete Correction Cream"!  (Well, La di da!)  Already the cosmetics world is having fun with all the puns about CC creams vs BB creams.  It sounds as if these CC cream will be telling the BB creams  (Blemish Balm creams, among other "names") to move over or to even just disappear.  Gosh!  Why do I suddenly feel as if I'm in the midst of a school yard brawl or a bad episode of "Sesame Street"?

I first wrote a review on BB creams here  in March and then in April (link) because they just seemed like such a great pairing with the person who has CFIDS/ME/CFS and fibromyalgia or anyone with illnesses who might experience skin problems.  Honestly, sometimes I feel as if all you need to do is look at us cross-eyed and our skin breaks out with strange rashes and/or hives.  At any rate, I tried out at least six or seven of them and kept coming back to the original one I'd liked.  Since the problems I (as well as others) encountered seemed to stem from the silicone and either how much was in the BB cream or how it was formulated, in September I wrote yet another review on one BB cream without silicone, see the Omorovitzsa link here.   And yes, the experimentation was as time-consuming as it sounds.

However,  I'm even more ecstatic about the promise of the CC Cream - fool that I am?  We'll see: I very well could be!   On the other hand, just think of all the steps "we" can save if we start using the CC cream - thus using up fewer "health credits" or "spoons."  If it proves to be as effective as it claims to be, it may end up - like the BB cream - taking the place of moisturizer, SPF, color and whichever treatments (as in plural) you feel you need, such as:

• help with those pesky wrinkles
• anti-aging properties (including green and white tea, of course, with the Asian products)
• treating hyper-pigmentation
• claims of being light-weight despite better coverage
• higher broad-spectrum SPFs (up to SPF 35 PA++)
• will work to brighen skin

My personal favorite BB cream became the Dr. Jart+ and has remained so, after having unpleasant reactions to quite a few others I tried - with hubby always asking, "are you experimenting with that crud again?" as I, in turn, deny all connection to any experimentation - "what, who, me?" 

So why in the world would companies now spend money on delivering us a new cream, that of the CC?  Hopefully, it won't be because of the same sort of reasoning that gave us the new Coke.  Until so many people in the entire world went ballistic, writing Coke (angry) letters and stockpiling all the old Coke that could be found, Coke then had to change back to the original but with a new name, "Coke Classic," in order to emphasize that they were back to the formula everyone wanted - in order to not lose anymore consumers!  However, if the CC's do as they claim, this could be a real boost to the consumer - not to mention the bottom dollar of the companies making these new CC's.  In fact, I think that it's time for the CC creams in that every company is now making their own BB cream and only a fraction of them, it seems, can legitimately be called BB creams.  Oh how I hope that this doesn't happen with the CC's.

But another reason as to why it's time for the CC?   So many consumers and makeup artist have complained about the limited availability of color and have wanted a larger and better selection of color.  Supposedly, they will now have it - somewhat.  The color variety is not as extensive as some have called for but the color supposedly works itself into the skin so well that the pigmentation won't be such a problem: reading between the lines, I should say, the pigmentation won't be as MUCH of a problem.

Furthermore, the CC creams will now also have remarkable powers to even and brighten the skin.  Furthermore, whereas many beauty editors and makeup artists found problems with the BB creams in terms of texture, feeling like they had too much silicone which made them just too oily and silicone-like on the face, the CC's have corrected this problems too (apparently) and will have a lighter texture.  (We shall see!)  I only hope that these are not yet more empty promises.

Some of the CC's will be more liquidy than others.  I'm hearing that the Olay's "Total Effects Tone Correcting UV Moisturizer" is just a repackaged version of their old BB cream, and is more souped up like a primer, whereas others will have more coverage.  In the the case of the Asian CC creams, the CC creams were developed there and have been in use for a while.  In other words, it'll depend on which you try and which will address your own personal needs.  The Singaporean brand "Rachel K" is getting great press, especially since it has so many goodies, such as "epidermal growth factor, which stimulates collagen production by speeding up your skin's natural exfoliation."  Exfoliation?  Be still my heart!  (Oh dear son and daughter-in-law: Christmas presents?)  I DO know that I'm running right to Chanel's version, which was also developed in Asia, as I do not want to mess up my face any further than the last few months have managed to do so on its very own, thank you very much, so I'm going to the company that I think will most agree with my skin, that Holy Grail: of course, Chanel.

With more treatments (for wrinkles, pores, etc.) added as well as antioxidants, not to mention the color improvement (I felt that that most of the old ones simply sat on your face too much, like a mask), I can't wait to get my hands on them.  Now WHY didn't the Chanel lady at the airport in Malaysia tell me about them?  (Kidding, I think!)

Here's to everyone feeling the very best they can, only better.  Caio and paka!

A Bit of Happiness, A Bit of Sadness

We've been much too serious for the last few posts, so I thought that today I'd try  (emhasis on "try") to lighten the load a bit for those of us living this nightmare condition known as CFDIS/ME/CFS and fibromyalgia.

Some of you may have noticed by now that one of my most-read posts is the one in which I wrote about the fact that even we sick want and need our beauty routines, which can be found with this link.  It perks me up, most definitely, if I can find a day that no matter what, I'm going to have a few hours in which I have the energy to indulge and make of it what I need - just a little time off from my stupid, hated CFIDS/ME/CFS and fibromyalgia - when I can self-indulge and pamper myself!  So come on: we can do it!  

I'm convinced that the first part of the equation is to buy something really decadent and if hubby or life-time partner gives you a look, you give him/her a look right back so he/she will never again complain about the cost of women.  Instead remind him that it is the woman who is the multi-tasker, going back thousands of years when "men" had to go out and hunt (la di da!) for the food while sad and exhausted woman stayed in the cave with the toddlers, usually one or two still breast feeding, while taking care that the toddler(s) who would inevitably try to crawl into the fire stayed away, all the while trying to cook up some food for the family - and that granddad was given smelly rags of all sort (greenery ones, of course) to take care of the abscessed leg, which would either kill him or, when desperate measures are called for, the leg would get amputated and then THAT would indeed kill him off.  Heck, woman was probably so overwhelmed by the men that she probably sent out gentle (and not so gentle) hints that it was time for some fresh meat, just for a moment all to her own without high maintainance "hubby" for her sanity.  She knew she couldn't take on hubby's job of killing animals (though how she'd love a few minutes to herself and most likely could have done a better job of it!) but knew that if she weren't in the cave, things would seriously deteriorate, all because she knew that if she weren't in the cave to multi-task, things would go awry, like REALLY AWRY!  Too many people depended upon her and the family wouldn't/couldn't survive more than an hour without her presence.

(Please pretend that there is a transition here!)  Last week, I have to admit that I was feeling a bit depressed, as I am indeed now.  I know that much of this is due to chemical changes due to the huge assaults that my body has sustained.  Whereas before I'd known I'd been most definitely in the sad stage, I'm now precariously on the edge of sadness and depression,  building up to the depression phase.   And the crazy part is that I feel that I have no right to feel sadness or depression since, in so many ways, I've been so much luckier than most.

I know that we should be responsible for one's own happiness, but I was never built that way, and after so many decades of trying to change myself, I know that it's not going to magically appear in me now at my advanced age.  Things will sky-rocket towards Christmas, something I dread with every fiber of my being.  Couldn't we work on getting the house in order, finish the old projects and skip all the expense of Christmas, which has become certainly too commercial and makes everyone crazy?  

If you're a mom who goes all out for Thanksgiving and Christmas, what are some of the strategies you've developed?  I really would love to hear them!

Until next time, I hope everyone is doing the absolutely best they can be, only better.  Ciao and paka!

P.S.: Sorry if I sound loopier than usual.  The back pain is horrendous and I can barely get up without passing out.  How much more can this stuff keep going on?  Next post I hope will be a beauty post, so maybe I'll be able to fulfill the happy, happy, happy!  I know that I really need to lighten up, but it's a bit of a problem when recovering from surgery and feeling worse than before. :)

Friday Tidbits: But This Is My Life Every Single Day!

Hi all!  In case anyone is counting, it's now been a week since my very unexpected surgery.  Here I am, writing in real time, having snuck up to my computer while no one's watching.  I thought I'd catch everyone up on what's been going on with, yes, the tidbits of my life, so to speak!  

As always happens to those of us with CFIDS/ME/CFS and/or fibro, nothing goes smoothly and things always end up being pretty hysterical - "hysterical" as in funny.  When I made the "heroic" decision to not have my gall stones removed a couple of years ago, I thought that I couldn't make that commitment because we never knew when the other shoe would drop and my daughter would need me to be with her at the "major medical center."  I felt I wasn't able to allow myself six weeks downtime.  Well, it's now Friday, so I thought I'd give you my thoughts in bullet points - just to keep that "Friday Tidbits" going: I do like a little bit of predictability in my life.

• Well, Surprise!  WHAT???  Going back to my "downtime."  I've learned, in the last few days, that my downtime will be more like six months!   The craziness is that I didn't realize that getting your gall bladder out was NOT like getting your tonsils out, even taken out as an adult.  Because of various complications with my tonsillectomy, I was in the hospital for five days, the usual being that you're sent home soon after those suckers are cut out.  It wasn't even as easy as my emergency hysterectomy or emergency appendectomy. Nope.  (See a pattern here?  I don't tend to get parts removed until need be!)
• As it turns out, the gall bladder is an organ vitally needed and the body has to make large adjustments. Throw in all the extenuating factors, that my body hasn't recovered from, the compartment syndrome surgery almost a year ago, that I am a super-sick mama with CFIDS/ME/CFS and fibro, that I'd undergone a trip halfway around the world just a few months ago and then had undiagnosed pneumonia on top of it all, that I'd developed hypothyroidism within the last couple of months, with a gall bladder that looked bad (inflamed) and stones that had nastiness around each of them: well, you're talking about the perfect storm.

Here's the beauty of it all, however.  But let me backtrack for a moment. (You didn't really think I could go a whole week without backtracking somewhere along the way, did you?)

• My surgeon was absolutely fantastic as were all the staff.  He actually sat down on my bed (huh? hadn't he heard that doctors don't go into the patient's space any longer?) and then invaded my personal space again, getting INTO my face, making contact with both eyes to make sure I was listening to him.  Dear God!  Did I focus at all about what the man said?  Of course not: I may be old but I'm not yet blind!  All I could focus on was how much of a hunk he was, still, after 20 years of my not having seen him anywhere around town.  As he talked more and more about the surgery, I couldn't help wonder, did he regret going into medicine and giving up football?  (We know way too much about everyone in this town!)  Those eyes.  The white hair: why do men get to be better looking with age?  Too bad I don't have a bunch of local friends any longer so we could dish!   Darn!  How was I to take things in with such a good-looking hunk doctor?   Like I said, I'm only human, not dead!  And much to the dismay of many, I AM truthful!  You're just getting the facts, oh dear reader!  (Oh no!  What did I say when I was under???)
• It wasn't a short little pep talk either, not once of the three times he gave me "serious talks"!  No, he gave me statistics as to how much healing would be accomplished at the end of a day, at the end of a week, at the end of three weeks and right on up the scale to six months.  Hearing those stats was pretty shocking.  Ah, but did they stay with me?  Of course not!  There are all sorts of statistics as to how much a patient retains from a doctor's visit: it's only about 10%.  Well, someone should do a study on how much is retained when the doctor's a hunk - and then when you're zonked out on pain and/or pain meds.  Good thing that the doctor knew to give out a lot of handouts, and not those wimpy sorts given out by hospitals, but tailor-made for his patients and the type of surgery with or without complications.  I suspect I got the "more complications" sheet.  Plus I now know that he's a REAL doctor because the added instructions were in awful doctor handwriting.  (Hey! The man had to have SOME sort of "defect"!)

(Oh good Lord: I just got a look at the description of the laparoscopic removal - excuse me as I need to run to bathroom and barf!)

• The hospital experience was actually quite fun.  I saw a few friends I'd not seen in ages.  People come and go more or less as much as they want and that is one of the reasons I love going local.  I was there so little (in and out) that my priest didn't even get a chance to find out I was there.  I heard one team doctor yelling that he didn't give an [expletives] what the [expletives] insurance companies wanted or didn't want but I wasn't going home until he [expletives] was good and ready to send me home.   Sigh.  I hear this sort of thing every time I get admitted: you can absolutely see just why the insurance companies do NOT want to recognize CFIDS.
• As is usual, when the 3AM hour rolled around and things got quiet on the floor, the staff's guards are down and they talk to you about the real picture of what's going on.  But a funny thing happened: someone had seen me doing my DIY facials on day #1 and wished she could wear moisturizers without breaking out.  After this "youngin'" left, I thought about it for a moment, then ran (OK, so I "hobbled") to my makeup area and took out three moisturizers (of several I just happened to have with me!) and called the young lady, asking her if she could come by, "when you have a chance, nothing important."  When she came in I asked her if she'd like a tiny demo of what a light moisturizer felt like, what a medium one felt like and what a heavy one felt like, explaining that the light one would be best for summer.  Someone found out about this and before I knew it, I was giving out advice on mascaras - I only remember because I didn't have my tube of Blinc mascara, which I've tried a couple of times and been very fascinated with: it coats your lashes like a tube and doesn't come off until you take it off the way you're supposed to.  I happened to have a few blushes (how???? I have NO idea!) and gave a few pointers there as well to someone else, all between bouts of pain.
• When I did come down with a bit of a melt-down, it was a nice - though extremely embarrassing - moment.  My body had reacted to the thyroid medicine the day before with a tiny rash that I thought was due to stress and I never thought to mention it to anyone, it was just so "ordinary."  The next day, after surgery, I was given the thyroid med again and I got a bigger rash, developed invisible itching areas and parts of my body started displaying hives - I was totally miserable and was trying to avoid a steroid shot like crazy.  Now this was the final blow.  No one could figure out what was happening until I looked up hypothyroidism and skin rashes on my trusted iPad and found that a rare reaction much like what I was experiencing is known to occur if the brands are switched around; to make it easier to understand, it's basically a filler/formulation problem.  Well, given that I was in pain, that I'd not slept for how many hours (minus the operating time, when I woke up in recovery and asked if I could walk around) not having eaten in 60 hours and nothing to drink in 48 hours, all my defenses were down and I just lost it, saying "but this is my life every single day!"  They thought that everything that was happening was "unusual" and that I was just "high-maintenance" for the moment.  No, my entire life is high-maintenance.
• The poor nurse. She moved her things into my room and did her work there and would break off to talk to me when she thought I needed a kind word or just to talk, or if she was needed elsewhere.  I felt like a wimp but frankly, didn't care any longer.  She, on the other hand, couldn't believe that anyone could go so long with no sleep and kept mentioning that to everyone as if THAT was the biggie at play.  I tried to impress upon her that what she was seeing was just a tiny bit of my no-sleep problem.  As with everything with these illnesses you can't believe it unless you see it for yourself.
• And finally, here's the "beauty" of all that happened, the part I digressed from in the beginning: I want to mention the great support of the CFIDS/ME/CFS and fibro community.  Thank you to one young lady for tweeting all her followers to pray for me regarding surgery.  It was sooo sweet to see that on twitter.  (I hope I didn't imagine it!)  Thank you to so many who prayed on your own for my successful surgery.  And thank you to a special reader for the info you sent me regarding tips on how to take care of myself after coming home.  Had it not been for your words of advice, I would never have realized how careful I had to be, thinking - before you'd written your comments - that I was having nothing more serious than any previous surgeries.

The pain is mostly gone.  In fact, true to form, I'm actually feeling far less pain now than I feel on a "normal day."  I am convinced that this happens because my immune system has something to fight against (the healing that needs to be done) and consequently the other parts of my body get a rest.  My biggest problem now is huge weakness, worse than I've ever had, which is saying a lot.  My mind can't get around the weakness because its bedfellow, pain, is missing.  I do still have trouble talking, thinking, walking, feeling overwhelmed.  Not to jinx myself, but on the whole, this has been a reprieve from my normal life.

As usual, I hope that everyone out there is doing their very best, only better.  Happy Weekend to all!   Ciao and paka!

"First Do No Harm"

Believe me: no one's laughing or smiling during this test!

Today's topic is one I've gone on and on about with fellow CFIDS/ME/CFS and fibromyalgia friends, as well as some pretty great doctors, for ages: lack of commonsense, waste of money and gimmicks in one area that I simply cannot see the justice in, namely the "tilt table test," in order to detect orthostatic intolerance or Postural Orthostatic Tachycardia Syndrome (POTS).  To tell you the truth, this post was written a few months ago but I hesitated to publish it because I felt I needed to tone it down a bit.  Wrong: I should know by now that one of my character flaws is that I don't feel better about things until I get them out.  Until then, I just get angrier about what I see as an injustice or even worse - worse than injustice, that is, not my behavior.

I can't even remember how often I've read on blogs - or before blogs were even imagined, on forums back in the '90's - that someone with CFIDS/ME/CFS and/or fibro has had to go and have the (now to me "infamous") tilt table test.  This is total insanity.  The ME patient gets sick from this test.  And believe me, I know.  As the T-shirt says, "been there, done that!"  Twice!

Whenever I read about another person who is subjected to the "tilt table" test and happens to mention that they got worse after it, I want to scream out "STOP IT, YOU IDIOT DOCTOR!" and that's just the tip of what I REALLY want to say. Fainting is only one problem that can occur during the test. The heart stopping is yet another problem.  When I saw a cardiologist a few years ago, HE almost passed out when he heard that I'd undergone the tilt table test, shaking his head at the insanity.

Over the years, I've done a bit (!) of research and interviewing about this subject because my first experience made me so sick.  Why did we do it?   Well, because it was "the thing" back then in the late '80's and early '90's.  But might I add that back then the advice/command and conventional wisdom was also, "no pain, no gain," and steroids to be taken every day, along with dozens of other "hard and fast" rules and beliefs which now sound goofy, if not crazy?

I didn't blame my doctors back then and looking back, don't now either.  We were in the "Stone Age" when it came to understanding CFIDS/ME and fibro.  No one knew what was going on and the advice, though very wrong and which ended up so often making me sicker, often with irreparable harm, was not malicious.  Nor were my doctors hesitant to reverse or modify what wasn't working, that which went against common sense when they saw a "failure."

But the tilt table test, in its time, made me horribly worse for much longer than I ever could have imagined.  Even back then I fumed.  In fact with this one thing, of so many other things, I fumed so much that I just couldn't let it go for some reason.  It was that little voice in your head that nags at you, telling you that something is wrong here.  My analogy is that it's computing in your head but the information won't come out because there's a paper jam.  Finally, the paper jam is resolved and eureka!  The paper spits out the info and you have the revelation.  OK. This may not the best of analogies, especially given how little I know about computers.  After all, I don't even know how to print anything out!  Sadly true!

But getting back to the tilt table test.  Shame on me for going through it again with a top ME specialist (eye-roll is the least of the facial expressions you can't see at this moment) within the last 5 years. I was so much sicker the second time around - it was the very reason I went to this doctor in the first place.  We were very, very, very desperate, wanting, indeed needing, yet another top doctor's advice.  It was a nightmare for many reasons, but the tilt table test is the bit that just sticks to me and I CAN'T let it go, especially since I KNEW BETTER.  I didn't listen to my instincts.

The good news?  There is an easy way to establish orthostaic intolerance.  Easy, cheap, fast and with no relapses, no making the illness MUCH worse as it was in my case.  After the second test, I actually had to be hospitalized.

The easy solution - and I hate to use the word "easy" because it sounds too good to be true.  However, I've spoken to quite a few sources about this over the years, pioneers in their fields, ones I respect a lot.  Each one has said the following, to use a very old-fashioned practice:

You lie down on the exam table and your blood pressure is taken.  You then come up to a sitting position and your BP is taken again.  Finally, you stand up and the BP is taken once more.

In my case, my BP is basically 90/70 lying down, 80/65 or 80/60 sitting and 70/55 or 70/50 standing.  The huge shifts are the orthostatic intolerance.

BUT: It doesn't even really matter what the numbers are, as long as there is a large progression in the decrease of your BP numbers from lying down, to sitting up, to standing up.  For example, if I'm in enough pain and not dealing with it well, my BP will go up to 130/whatever and a few times much, much higher.  But sitting up, it'll go down, and standing up, it'll go down even further.  With some CFIDS/ME and fibromyalgia patients, it takes a little longer between the sitting up and the standing up for the changes to be noticed.  I happen to be one who needs no time at all, going kapooie at once.  It's no fun, I agree.  But this is so much easier on the body than being strapped into the machine and made to stand in/against it in the dark while the doctor annoyingly whispers gossip with his nurse for an hour.  If nothing else, how rude!

The only question that remains in my head?  Are those doctors still using the tilt table test just plain idiots, trying to run a procedure to make more money or simply trying to pay off and justify the purchase of an idiotic product?

And let me make this perfectly clear: normally, I have a bit of a problem when people complain about doctors making money, because doctors are trying to make a living, just like anyone else.  They have a lot they're fighting and those who still elect to treat us, the "train wrecks" of medicine, should on the whole be commended.  We're not easy patients, to put it mildly.  These doctors also have had extensive schooling and training.  I get that.

However, when I see something that is being done that belongs back in the "Stone Age" in regards to ME, and we're now in what I like to refer to as the "Middle Ages" in ME, that is, we still have so far to go, I do get very, very upset, and I think justifiable so.

Yes, this is a rant.  But it is a justified one which has been researched, and which I've, unfortunately, had experience with.  I would like to see this horrible injustice stopped for good in the case of ME.  I don't know about the effectiveness or ineffectiveness of the test in other illnesses - I'm the first to admit this, though I don't see how it would make a difference - but I know that in this case, all too well, the problems that do result.  Doctors who treat us must remember that most important part of the Hippocratic Oath: physician, do no harm.

Orthostatic intolerance is a huge problem, but why add to the problem by using a machine that induces further complications when there is a tried-and-true method that costs nothing and does not cause a patient to get even sicker than before?

Rant over.  I must admit, my heart is beating at an unhealthy rate here, knowing that I am not politely carrying out politically-correct messages, going against a lot of people out there who've never had it yelled out to them that they're not wearing clothes, as in the proverbial tale we all learned as children about a certain emperor.  But so it goes. What's going to happen to me?  Will someone take away my status as a "professional CFIDS'er"?  Please: that's one title I'd love to be rid of!  In the meanwhile I'll lose some sleep: like that's anything new?  So, why the rushing heart beat?  Because I don't like confrontation?  At my age, it may well be time to get over that too.

At any rate, as always, I hope you're feeling your very best, only better.  Ciao and paka!

Friday Tidbits: 10 Beauty and Hospitalization Tips

Considering that I'm in the hospital today and, at the very least, tomorrow as well, I thought I'd address a few hospital tips for those with CFIDS/ME/CFS and fibromyalgia, for a more "successful" stay.   Yes, I'm trying awfully hard to get this "Friday Tidbits" going and on schedule to boot!  Ah, what dedication!  (Ah, what boredom and a bit of nerves as well, I freely admit!)

1. Bringing earplugs with you can be heaven-sent if you are sensitive to sound.  I finally found a brand and type I love, Mack's "Dreamgirl Soft Foam Earplugs" (available at drugstore.com).  Normally, I feel earplugs are too uncomfortable to bother with, but these are really unbelievably comfy.

2. Eye masks are great for light sensitivity since it's never really dark in a hospital. I found a pretty generic type and for the first time ever, I'm not only able to tolerate it, but actually enjoy wearing one, even at home when I happen to finally fall asleep during the day. This is truly amazing since I hate most things on my face. I bought the "Body Benefits Satin Sleep Eye Mask," at drugstore.com.

3.  In my down time, to deflect from not sleeping and to try to ignore the pain, as well as the dreaded surgery to come (let's get it over with NOW is my feeling!) I've started in on my DIY facials, much like the long-haul flight treatments I discussed when flying out to Malaysia. I'm doing a good cleansing - hitting those pores and hyperpigmentation with everything I have! - along with exfoliation, treatment masks, serums, and other treatments like SkinCeuticals CE Ferulic Acid (see this link for my reviews here and here ) with moisturizer or Liquid Gold without moisturizer.  I'm indulging in the Sisley Express Flower Gel Mask, as well as my personal Hall of Famer, Elemis' "Papaya Enzyme Peel Mask" - not all at the same time, of course!  In other words, as I wait, I'm doing "the works" and enjoying "being a girl."   Who knew a hospital could be used as a spa???

Of course, I'm sure that later today, post-op, DYI's will be the last thing on my mind but as I stayed up all night with my usual insomnia and my out-the-wazoo pain, I'm trying to have some fun and trying to keep my patience to whatever maximum I'm capable of, which is, and always has been, almost zilch!  I've already experimented with one round of makeup and may be up for a second round if I get too bored and can summon the energy to go there again.  Actually, I'll try just about anything to make the waiting time go by faster!  And with the micellar water, it'll take just seconds to get any cosmetics off for the surgery once a slot becomes available.  (Yes, I'm shallow, but sooo easily pleased!)

4. I'm happy with myself and annoyed with myself, both.  I'm happy in that I managed to put quite a few mini-sized products into a "travel bag" but was more or less haphazard about it, knowing there'd be no real chance of a vacation any time soon.  I hadn't anticipated hospitalizations, however.  (Where IS that so-called brain of mine?)  So, after I was settled in my room, hubby made a mad dash home with an extensive list and had to scour cabinets and drawers for certain products and clothing, electronic devices, chargers.  You'd think I'm in here for, at the very least, a two-week stay!  Thankfully, he didn't need to start from scratch, but it was still quite a scavenger hunt.  The real basics were there, however, in one place, so, hallelujah!

5. I love flip flops for hospitals.  They are easy for "on and off" and afford more skid-free walking than slippers or those socks with "grips" on them.  But don't go for the real cheapo kind which are harder to walk in and cause any number of problems, such as blisters.

6. Try bringing a notebook: they're great for all sorts of things!  For example, I like to keep track of my vitals, even how I'm feeling. I should, actually, list symptoms but that's just so beyond me at the moment. Back to my "vitals," I came in on Thursday with a BP of 90/45 but am now, on Friday very early morning, at an unheard of - for me - 145/90 and 142/98, due to the pain factor.  If I hadn't written these numbers down, I'd question my memory, and rightfully so, because of fibro-brain.  I also make lists of questions for doctors and nurses, which meds I'm given and when - ESPECIALLY my pain meds - and who my nurses are/were because inevitably someone will ask me, somewhere at sometime about something saying, "well, who told you THAT?" and I have no clue.

7. I like to bring a bunch of my own washcloths and hand towels, and in colors other than white.  The washcloths and towels that hospitals carry abrade the skin all too easily, or bring on rashes and even hives.  So, I bring my own and in order to not lose them, in a color as far from white as possible.  I use a hand towel to dry my body since do you REALLY need a bath towel?

8. I'm loving those sponges on a stick which are used to moisten your mouth and lips - no water allowed, now going on well over 48 hours so far, and ice chips monitored closer than any restaurant chef with his precious truffles!  I think I'll try to get those for home use as well since the various lip balms I have are simply not enough.  Perhaps these little sponges can work synergistically with lip balms?  One can only hope!

9. Micellar Water, especially my beloved Bioderma, is a life-saver if you can't get out of bed for a good facial cleanse. I wash off the Bioderma with a damp washcloth and then put on a serum followed by a treatment (anti-aging or hyperpigmentation, for example), followed by a good moisturizer.

10. Since the air is so dry, I'm also using a "water-in-a-can" such as Evian or Avene. Its fine mist helps a bit with the very dry eyes I have going from so many pain meds, so every little trick helps!

So, there you have it!  I'm not sure when I'll be back since so much depends on how the surgery and recovery goes, fibro-brain the biggest concern, of course! Hopefully, I won't have too much down time - I wouldn't want you to miss me too much! (Joke!)

Wishing all a super weekend with everyone feeling their absolute best, only better. Caio and paka!