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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A Shot In the Dark?

Soon!

It's almost autumn, which is, theoretically speaking, my favorite time of year.  I love the fact that soon we can once again go back to wearing sweaters - better yet, blazers and boots. (OK, so technically, not so much for me, but what's a technicality among friends, eh?)

Suddenly, I no longer spend too much time wishing my skin were removable like the lining of an all-seasons raincoat, although perhaps I should reword that statement as I would love nothing better than to be given a new healthy body - and a brain too, if that's not asking for too much.  If you have CFIDS/ME and/or fibromyalgia and even migraines, you most probably know what I mean.  (If) you're able to get out, it means that the days have changed!   Fall means not only beautiful foliage and crisp clean air, but that it's also possible to breathe again without feeling as if you'd walked into the kitchen of a diner before air conditioners became affordable, much less invented.

But to me, fall also means a dangerous time of year.  The temperatures are so drastic that one day it goes from 90 degrees to the next day temperatures in the 60's or below to the 40's and '30's, depending on where you live, or what the climate decides to do that year.  You finally get to the cooler temperatures and then "Indian Summers" begin and they don't last a week or so, but all too often seesaw back and forth, worse than any hyperactive child on a school playground.

Suddenly viruses and germs start popping up from all over.  Children going back to school means that those germs and viruses find a perfect breeding ground for those "goodies" to start spreading their wings - if those little nasties had wings, that is!

The part which *I* happen to "love" best is that anyone who comes into MY house and comes anywhere near me becomes a "Typhoid Mary."  That is, most often they bring home the viruses and germs and yet don't normally get sick themselves.

It's all to do with a huge subgroup - for argument's sake, I will call it "a subgroup," because, really, no one knows what the heck really is going on with this "umbrella" of illnesses we at the moment call "Chronic Fatigue and Immune Dysfunction" or "Myalgic Encephalomyelitis." (I love the later term, "ME," but not spelling out those words!)  It all has to do with our wacko immune systems, which don't even need to belong to those with CFIDS/ME or fibromyalgia but just about anyone with a screwy immune system or enough stress.  In my "subgroup" at least, I have a under-active immune system and an over-active immune system, both at the same time, affecting different systems.  For example, it's under-active while fighting infections but over-active in responding to the initial viral infection. 

This year we started this "Autumn Syndrome" early and this year we all came down with some sort of bug that's now going around town, starting with Labor Day weekend.  My feeling is "really???  Already?"  Yes, we all pretty much had a cruddy Labor Day weekend with a following week to match it, despite my optimism.  (When will I ever learn?)  I felt badly for my family but I was also feeling pretty sorry for myself too, I admit it.  I'm not a robot: I do have days when I get really cranky and it's just that much harder to laugh.  I also have to admit that all too often the only time I'm sure if there's something "normal" wrong with me and not something that's due to my core illness of CFIDS/ME/fibro is by seeing if my family is affected or the town is affected.  Other times I feel as I'm the canary in the coalmine which warns of what will be seen in the upcoming fall/winter season.

No, I do not get the flu shot each year, although I have a couple of times in the past.   Just as with every aspect of CFIDS/ME, even the advice on flu shots has gone back and forth as to "yes, DO get the flu vaccine, ARE YOU INSANE?" or "NO, do NOT get the flu shot! ARE YOU INSANE?"   I gave it up after my second flu shot which gave me the flu yet again, and pretty bad bouts of it at that.  After I got over the flu - in both cases - I was much worse than before I'd had the vaccines.  I'm glad that finally, most places no longer twist your arm about getting one because that's what mine had been: twisting of the arm, despite hubby, a relatively healthy person (knock on wood!) refusing the flu shot each and every year.

And though I DO have a problem with some vaccines (do we really need as many vaccines as are being hauled out these days?), I do believe one vaccine which has served me well is the "pneumonia vaccine."  I'd come down with severe bronchitis one year which turned into pneumonia, went straight into pneumonia the second time around, coming close to death because we had a hard time finding an antibiotic that worked on me and the third time it was an incredibly close call.  Period.  That's when we all decided that a vaccine would be worthwhile (understatement?).  In this case, however, we knew what we were vaccinating for, and knew that I would definitely not survive a fourth bout of pneumonia.

All of which is to say that please watch yourselves this season, especially if you're relatively new to this horrific ordeal. I'm not sure that all the doctors out there agree in regards to the flu vaccinations - a nice way of saying too many don't want to admit that they've gone back and forth on every theory they've sprung on us better than any Olympian winning gymnastics team.   

In the meanwhile, hoping that all are feeling the best they can be, only better.  Ciao and paka.

A Model Life: Especially For Her Time

I have lived in a very special world - a world of love and security; beauty and serenity; opportunity, adventure, and variety; challenge and achievement; and the appreciation of my peers. I have had a sufficiency of everything that I desired and a surfeit of nothing."  -Dr. Travell, from Office Hours: Day and Night, 1968

This weekend I found myself thinking about the contributions that women have made over the years - and even in centuries past - in certain fields.  Yet all too often these phenomenal women have been forgotten.  It started off as a spoof I wrote to my BFF about the roles of women and men.  However, it developed into something else completely as that evening I got really sick and somehow my thoughts came around to a huge pioneer in pain management whom I felt many who read my blog should know about, especially the younger women I come across.  She's the mighty fine lady who was a definite pioneer in trigger points and myfascial pain syndrome.  And I love this part: though trigger points started their rounds amidst a tiny group of (male) doctors, through the 1920's, '30's and 40's, she outlasted her male counterparts.  They gave up, but she persevered, really discovered it and ruled it! 

Janet Travell (born in December of 1901) has been on my personal radar for decades for all too many reasons that I won't go into at the moment (did I just hear a collective sigh of relief???) and has fascinated me for decades.

At a time when men overwhelmingly ruled the medical profession, Janet Travell went to medical school in NYC, to Cornell.  She studied in a equally prestigious training program at New York Hospital, while also serving as an ambulance surgeon for the New York City police force - go, JT!  As a research fellow at Bellevue, she studied digitalis for lobar pneumonia, but it was during her years at Beth Israel Hospital in NYC that she became so fascinated in skeletal muscle pain, and which rocketed her career into the stratosphere.

Some of you very young readers may not really comprehend the magnitude of this sort of achievement. I'm old enough to remember having a pediatrician for a brief period who was a woman - and boy oh boy, did people ever notice - and criticize! (How unfeminine! How unseemly!)  Because of her devotion as a physician my pediatrician never married nor had children, which was quite the norm in all too many cases back then: choose a career or a family, but not both! Better yet, stay home bare-foot and pregnant.  At least now we have choices.  Back then, it was really tough to do much of anything for a woman.  And if a woman dared to become a doctor, the two "acceptable" fields seemed to be OB/GYN or pediatrics.

Yet Dr.Travell managed medical school, doing research, training, practicing, and then to marry and have two daughters.

 
In the 1950's, she took on a protegee, David G. Simons, who had served as an Air Force flight surgeon.   Many years later, they went on to write the seminal textbooks on  myofascial pain syndrome, aptly titled, Myofascial Pain and Dysfunction: The Trigger Point Manual; Vol. 1. The Upper Half of Body, dealing indeed with the upper half of the body from the waist up and then Myofascial Pain and Dysfunction: The Trigger Point Manual; Vol. 2., The Lower Extremities dealing with the bottom part of the body, from the waist down.  Both volumes are available at Amazon and the second edition of the first volume was published with Dr. Travell, though when the time came for the second edition of volume two, Dr. Travell had passed away.

In the 50's, when a certain politician happened to hear of the successful procedures that Dr. Travell had had with back pain the politician's orthopedic surgeon asked for her help.  This politician had sustained massive back injuries during WW2 and the many invasive back surgeries he'd then had to endure made his pain almost unbearable.  When this young man was later elected President, he asked Dr. Travell to be the "Personal Physician to the President" and she humbly accepted, thus becoming the first female physician to serve in this position.  After President Kennedy was assassinated, President Johnson asked if she would continue to serve as the White House physician but she left in 1965 for "greener pastures," as a professor, lecturer, and many other incredible "feats." 

Two bits of trivia.  First: if you've read any biographies of JFK, you might mistaken Dr. Travell as the infamous "Dr. Feelgood" who was often slipped into the back doors of the White House in order to give JFK questionable pain cocktails. This was most certainly not Dr. Travell.  Secondly, it was because Dr. Travell "perscribed" a rocking chair for the President's back that the rocking chair became wildly popular during the Kennedy years and long after. (Can you tell I love trivia?)

In an interview I'd done at one point, I asked a doctor who'd known Dr. Travell, why is it that we rarely hear of myofascial pain syndrome but so many are familiar with fibromyalgia?  Before he could answer I jumped in and asked if it was because fibromyalgia now has a "magic pill" in the form of Lyrica, Cymbalta or Savella and thus is advertised on TV an awful lot.  Yes, many are relieved by these medications but there's also huge profits to be made in these medications.  (Pharmas: if you happened to be reading my teeny tiny blog, I'm hardly worth your while and have left instructions as to what to do in the case of my  sudden death: joking!)  It's just the way the medical industry works: not good or bad, just IS, for many reasons.  (Remember, I don't do politics!)

On the other hand, myofascial pain needs the skills of a trained physician to hit those trigger points just right and, indeed, to even identify them.  (Poor man couldn't get in a word edgewise with me there!)

I asked him what precisely is the difference between fibromyalgia and myofascial pain syndrome?  Before I could jump in with an answer for him, he told me that myofascial pain syndrome is a condition that affects the muscles, and, of course, the famous "trigger points" are involved.   Fibromyalgia, on the other hand, involves the brain, in the central nervous system, and has "tender points." 

These two fields evolved separately.  On the whole, myofascial pain syndrome is addressed by physiatrists (not a spelling error!), and physical rehabilitation medicine physicians, even anesthesiologists at times.  I've read that chiropractors who practice kinesiology are often involved in this field also. (And I can attest to one chiropractor who practiced "applied kinesiology," which helped me tremendously.)  Furthermore, many of her techniques are still in use today, especially in sports medicine treatments.

Some of us who have CFIDS/CFS/ME often have fibromyalgia (there is much overlap) and/or myofascial pain, as is in my case.  The overlap of CFIDS and fibromyalgia is often hard enough to distinguish.  The physician who isn't well-trained in both fibromyalgia and myofascial pain often has trouble distinguishing the two fields as well, and in too many cases doesn't know about either field, though that is changing, albeit slowly.

After President Kennedy's death, Dr. Travel continued with an ever-increasing successful career.  I've heard from a couple of doctors who knew her that she was charming and witty.  She continued going to conference well into her 90's, despite a wheelchair, and kept up a practice seeing patients up until the year before her death, at the age of 95.  She was always encouraging to the talented young doctors coming up along the way and kept up a steady correspondence with many.  One doctor told me how he came to see something that Dr. Travell hadn't realized in her book but was uncertain as to whether or not he was seeing things correctly and had so much respect for her that he called her, gingerly addressing the bind he was in.  Rather than be discouraging, she was thrilled that he'd made this observation and encouraged him to publish and indeed nominated him herself for the Janet Travell award, twice!   Yet when this doctor was even younger, a (male) mentor was afraid of publishing findings because he feared alienating anyone in his field, despite the new evidence.  And you wonder why I think she's so incredible?

And, you may wonder, why in the world did I bring up Dr. Janet Travell in the first place, other than to be present a piece on what to some may appear to be trivia?

The answer is that I've realized that many of the people who read this blog are young, more often young women as opposed to young men.  They (you) have dreams, often life-long dreams, which have been put on hold.  They (you) need to rest up and take care of themselves in order to beat these "invisible" illnesses.  The odds, they (you) often think, are against them.  (Oh good heavens: we can be here all night with the semantics!)

I'd like for them to consider two things.  First, you may have to take a leave of absence from the life you envisioned for yourself in order to give your body the rest and healing it needs.  

But secondly, your dreams may change as you make this new journey.  Your dreams may become even more rewarding than you might have ever imagined before coming down with these various illnesses.

To give you a good feel for the magnitude of what Dr. Travell went through: it was only in 1920 that women in the US got the privilege of casting a vote.  But, in 1920, Dr. Travell would have been only 18 years old, but everyone - male or female - had to be 21 years of age to vote, so she had to wait for the following election to place her first vote!   And yet in just a little over 35 years later, she was the official physician at the White House.  Oh, how I love that!!!

I don't care for the fact that too many doctors, advisers, etc., are giving out advise that is "one size fits all."  Think how wrong a bathing suit that "one size fits all" looks like, or even a T-shirt.  Why would we want medicine that does?

So, again my message to all is, learn to read your bodies.  No one will ever know it as well as you do.  Then give your doctor or doctors the info she (or he!) needs in order to work as a team to get you better, no matter what illness you or your loved ones may have.  Knowledge is power!

So, to Dr. Travell: hats off to you.  Another fine example to all, certainly an inspiration.

And in the meantime, I hope all are feeling as best as they can be, only better.  Ciao and paka.

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

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!

Just For Fun...

My incredible workhorse, Temperley's Elemis Safari Traveler, on board

                        

One of my favorite beauty lines is the luxury British brand, Elemis.  Yes, it is rather pricey (ahem) but I've found that for the most part, using the much more affordable brands all too often wreak havoc with my CFIDS/ME and fibromyalgia funky skin, so much so that hubby begs me to stop trying to save money in this one area, skincare, as well as makeup. Yes, this is yet another example of one of what I call "the hidden costs" of CFIDS/etc.  Others include, though are not limited to, trying to find help for the dozens of jobs you can no longer do yourself, like cook or clean, cut the grass, pick up your meds, go to the store for anything whatsoever.  But I digress.

I finally broke down and made my first Elemis purchase when my absolutely favorite blogger, Ruth-the-model (versus my absolutely other favorite blogger, my dear Internet ME daughter, Ruth-the-Cambridge-student, as the two Ruths are known in this house) showed the readers/viewers of her blog and video a treasure which Alice Temperley, the hot current British designer Ruth-the-model had introduced.  Being an American, I'd never heard of this British designer who'd created such a wonderful beauty products bag for Elemis, filled of course, with a few Elemis products.  After much hemming and hawing, I finally broke down and bought it.

Little did I realize that shortly thereafter I'd be going to Kuala Lumpur, during which one of my four (!) flights going TO KL was canceled, causing me to spend the night in an airport hotel and thus causing me to arrive in KL one and a half days late.  But that gorgeous, very convenient and well-designed bag was by my side going there, while there, and coming home.  It was even with me as I took a luxurious shower during a long layover in an immaculate lounge in the famous Singapore airport - words I never thought I'd ever write, much less actually do, on so many levels.  Flying halfway around the world?  Asia?  Using a public toilet, much less a "public" shower?  I swear that airport was so incredible that I'm almost ready to make plans to fly to Singapore just for the airport experience alone!   It was just that incredible. Amazing.

The Elemis products which came with the bag truly are some of my favorites.  I seriously doubt that I'll ever be able to find another bath treatment better than the "Skin Nourishing Milk Bath."   (Cleopatra, with all due respect, eat your heart out!)  After a good soak with the milk formula in the bathwater, I find any areas of my body which might be dry, and even the occasional "chicken skin," vanish.  (Lovely pictures I describe of myself, no?)  I'm saving up my pennies (dollars!) for another purchase and need to do so soon, especially with this latest complication of the hypothyroidism and the out-the-wazoo dehydrated skin. 

The facial cleanser, "Pro-Radiance Cream Cleanser," works like a charm and I've had very good results with it.  It DOES have a bit of a sting to it and once hubby was almost paralyzed with fear when he happened upon me doing a facial DIY in the tub and caught a look at my face.  He warned me that it was very red, but by the time I'd finished up and looked in the mirror, all redness was gone and I was very happy with the results, as always.

The moisturizer, "Pro-Collagen Marine Cream" I reviewed here.  And YES!  I now remember that's the one which was so successful this past weekend, which I couldn't remember in yesterday's post.  (Darn those slow neuro-transmitters!) 

One last aside which will (eventually!) come back to the discussion at hand: "Project Runway" is our guilty pleasure. Hubby has rarely been able to resist any sort of competition and so when I started watching it, he joined me in order to spend a relaxing hour together.  However, he made me SWEAR that I'd never tell a soul that he watches the show and I honored that pledge.  Let's just say that hubby hates to wear anything that looks nice on him and rarely am I not embarrassed being by his side, purely clothes-wise, I hasten to add.  Oh, he cleans up very well when he wants to, but normally he likes to dress with the most atrocious things he can find.  I think he actually enjoys frustrating me and considers it part of his "identity."  (He actually thinks this part is very funny!)

At any rate, after a few seasons of watching "PR" - the things that would start coming out of his mouth!  He now talks about proportion, loudly and proudly, and often chides those who pick out a fabric which will be a mistake, gets frustrated when a designer makes a huge error with a feature that "does the model no favors," (parroting Michael Kors' words, I believe?), is exasperated when a designer constantly repeats the same errors or does not "grow" and often accurately predicts the winner well ahead of time.  Again, the things that come out of his mouth are incredible!  Who knew he had this talent? 

But when Mondo lost a couple of seasons ago, hubby was so upset that he went around saying "Mondo was robbed!" to just about everyone he came in contact with, be it lawyers, truck drivers, teachers, it mattered not who it was, nor if they'd even seen or heard of the show - or cared!   Well, after that, I was released from my promise of no disclosure. And after all this time, he's still upset about Mondo - and still quite vocal about it.

So imagine the hooting and hollerin' (by moi) that went on when Alice Temperley was a guest host on "Project Runway" recently.  I was so excited that I was "in the know," as I commented on Ruth-the-model's blog, just yesterday.  It was just plain fun watching this designer's opinions - and thankfully liking what I heard.

Yes, indeedy, hubby and I get our jollies wherever we can, within reason.  (Eye roll!)

But if you want to try out a really fantastic line, I don't think you can go wrong with Elemis.  And if you can afford the Temperley Safari bag, you may want to treat yourself and go for it - it's right up there with one of my best and most successful purchases ever.  (For purchase, it's available at Bliss.)

And if you want a really great beauty blog to read, Ruth-the-model's blog, A Model Recommends is a lot of fun, filled with humor, insight and insider information. 

Do you have a favorite "luxury" purchase you treated yourself to and are still delighted that you made that difficult decision, be it beauty-related, to anything at all, even a lamp tucked away in a favorite nook in your house?  I'd love to hear about it, especially as I know how difficult decision-making is for the CFIDS/ME and fibro person - or anyone else for that matter!

In the meantime, I hope all are doing the best they can be, only better.  (I embrace my fibro-logic!)  Ciao and paka!

The DIY and TLC for my face: beauty tips

This past weekend I felt that I really needed to give my face a DIY, as well as some consistent TLC and serious attention.  Between the shampoo system that went awry and the newly-developed hypothyroidism, I felt it was time to take charge.  Furthermore, the skin problems associated with hypothyroidism often first manifest themselves in the face (NOT THE FACE!  NOT THE FACE! - see this link if you'd like to see me poke fun at myself!) and though my skin has suddenly developed an occasional yellowish cast to it, a definite thickening and puffiness can be seen, it's also become a bit bumpy and severely dehydrated, and I've experienced a couple instances of sudden unexplained "wounds," which are taking their sweet time healing.  I've not gotten to the acne stage nor the flaky stage and I'd like to keep these and other problems as far away as possible - in fact, to work hard on reversing the damage.  I also do NOT want/need other added complications - I have enough problems I'm dealing with already, thank you very much.  I'm determined that my year of "looking human" WILL succeed!  (Semi-joking.)

The following are the products I had incredible results within just three days - whew!  I chose well! - just as I started my thyroid medication.  My skin is still not where it should be, but I AM fighting many fronts at the moment, problems I've never seen before on my visage!  The regiment I followed this weekend is as follows:

• Dermalogica Daily Microfoliant.  A powdery substance that activates as you add water and work into the palm of your hand, I like to use this as a mini-cleanser and exfoliator.  In MY case, it starts the job of evening out the rough pores I have on my nose especially well. 
• Dermalogica Skin Resurfacing Cleanser.  This may seem like over-kill, and in most instances I would agree, but we're talking really bad skin problems and I was quite gentle with this cleanser.  I liked the lactic acid, Vitamin E and Rose Flower oil combo.  It really did a nice job combined with the microexfoliant, though I didn't care for what was left over, so I used a...
• Muslin cloth, very, very gently, and then splashing my face with water over and over again as well.  I wanted those dead skin cells as far gone as possible in order to really take in the next treatment, the...
• Omorovicza Deep Cleansing Mask.  OK.  I admit I was overdoing it at this point, but we're talking about desperate skin conditions!  I really liked this new product quite a bit - and I only used it once since it is not the sort of product used every day.
• La Mer hydrating serum was added at this point.  I loved it.  

OK.  I admit it: by the time I got to this stage I was so tired and fibro-brained that I do NOT even remember which moisturizer it was that I used and am quite disappointed as whatever it was, it worked a treat!  It will hopefully come back to me, but I can't begin to pretend I remember something in order to save face (ha! get it?) and advise willy-nilly. I may have a lousy memory but at least I'm honest about it!  (Dead serious!)

And I'd also like to add that I do always prefer to do a double cleanse, be it starting with my beloved Dove beauty bar (the original), a micellar water (I still have best results with Bioderma) or a new product of some sort.  Perhaps I also do this to make up for the fact that I'm so rarely able to wash my face twice a day....though remember, my life is basically limited to my bedroom and a few hours at the computer after I've done as much as possible on my iPad, so cell turn-over and getting rid of dead skin cells are more a factor than cleanliness most of the time: when I do go back to a big city such as NYC, I'm always shocked to see what my skin endured when I lived there!

After an initial "wash," I get into a cleanser that is serious business (exfoliation and/or a muslin cloth) in order to get rid of all the dead skin cells so that any further treatment will be able to soak into my face really well.  If I use a mask, I often put on a thin layer, then a few minutes later, add a good layer to it, a really successful way for me to go with some types, such as Sisley's.

There you have it: perhaps a record in the short post category, but hopefully, long in the helpful one?

In the meanwhile, I hope everyone's feeling 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!)