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!)

Dry Skin: The Tip of the Iceberg?

Desperate times call for desperate measures: using a hydrating mask yesterday before the dehydration numbers came in from my blood work.

Well, it seems that I've sort of lost yet another body part, or more accurately, the functionality of it.

Three weeks ago, in order to help out over-worked hubby, it was my daughter who took me to my monthly mandatory visit to my GP.  Well, THAT was a bit of a stunner.  My daughter, a teacher, put on that special ed teacher hat of hers, the one I don't normally see in full action, and in a very gentle manner, basically urged, prodded and forced me to explain all the concerns I've been experiencing since about spring, almost a year and a half ago by now.  Who knew she could be this person?

I've KNOWN that there is something new that is majorly wrong with me - and have, at times, complained about it loudly, other times not bothering to at all since I too often feel that no one is listening.  But what I do realize is that my daughter has a finely tuned antenna for the things that go on with me, amazingly so.  Anyway, this "major new hugely bad problem" happens every few years - with the time my body stopped producing Human Growth Hormone as one prime example.  So, blood tests were ordered (at my daughter's gentle but firm insistence to do it now in order to just get the ball rolling) and yesterday I got one set of results: I have developed hypothyroidism.  Furthermore, the other "bad numbers" that came in gel with hypothyroidism.

In talking to my doctor, he brought up a good question: how can I fix you if you can't tell me what it is?  Fibro-brain at its best on my part.  Good point on his.  However, since that visit I've amassed a list of at least 12 new strange things, things I'd mutter under my breath without realizing it ad hubby hearing it.  A few are explained by the hypothyroidism (more on that in a future post) 

This news is not surprising since the tricky part in the past year and a half has been that there are so many symptoms which overlap with CFIDS/ME and hypothyroidism, with a short account on that in days to come.  To demonstrate how tricky some of these diagnoses are, I thought I'd jot down a "few" of the symptoms (ha!) which I found on sites from the Mayo Clinic, WebMD and others:

• Coarse and thinning hair. (check: for thinning!)
• Dry skin. (check: to be discussed in a later post)
• Brittle nails.  (check: incredibly so)
• A yellowish tint to the skin. (check: comes and goes but so much lately that I've actually tried bleaching my palms!!!)
• Slow body movements. (check)
• Cold skin (check: but more later)
• Increased inability to tolerate cold. (hey: why don't I have that?  Oh yeah I do, I simply forgot how often I've been changing the thermostat each day lately)
• Memory problems (duh? And see above)
• Problems concentrating (check!)
• Feeling tired, sluggish, or weak. (Super, super, super check, aka "SSSC")
• Constipation  (no comment)

To continue, I also read that "other, less common symptoms" may include:

• Modest weight gain, unexplained weight gain 10 lb (4.5 kg) or less. (check: future post)
• Swelling of the arms, hands, legs, and feet (check: eye roll) 
• Peripheral neuropathy (check: it got better but recently moved to new areas)
• Facial puffiness, particularly around the eyes. (you have noooo idea how bad lately)
• Hoarseness. (ditto: almost never talk w/out hoarseness now)
• Muscle aches and cramps. (really?)
• Pale, dry skin (oy!)
• An elevated blood cholesterol level (ay!)
• Muscle aches, tenderness and stiffness (aha!)
• Pain, stiffness or swelling in your joints (hmmm...of course!)
• Muscle weakness (it's all in my head, right?)
• Food unappetizing, no taste (yes...I'm gonna cry!)
• Sadness or depression

I loved the depression part as I have that psychiatric wastebasket bugaboo, being a veteran of the DD war and thus scarred from the early years when my CFIDS/ME and fibro were unknown and later when NO one out there believed.  We are not only our "mother's daughters" - as I've so often said - but we are also products of our generation and my generation of CFIDS/ME and fibromyalgia was treated as shabbily as the suffragettes who had the audacity to want to vote and were all too often considered mentally ill for such outrageously blasphemous thinking.

I will start taking the thyroid medication and it'll take a month or two to kick in and we will see what happens. Hopefully, once the thyroid levels become normal, the cholesterol count of 355 will come down, the triglycerides, glucose levels will go to more normal levels and the latest puzzle of why my skin is so dry, with very little helping to remedy the situation, my eyes dry as well, to the point of being almost unbearably painful, will be answered.

You can bet that I will be coming back to this topic.  It's important to keep in mind that it's dangerous to keep blaming EVERYTHING on the DD.  Just because you have CFIDS/ME and fibromyalgia doesn't mean that you get a pass for other illnesses developing - even cancer.  In fact, because of our wacky immunological and neurological dysfunctional, compromised and impaired systems, I would venture to think that we are at an added risk for just about everything across the board.

I know that the hypothyroidism is not the answer to what I'm calling, "the big new seriously bad thing that is happening" problem.  But at least we have a good start!  (And yes, I realize that was yet another sentence fragment.)

At any rate, here's to everyone feeling the best they can be, only better!

Finally, a reminder that tomorrow is the drawing for the Skyn Iceland kit.  You know the spiel by now.  There's still time to join and enter. Just think: those who've signed up and left a post here have perhaps the biggest chance in the world of winning something EVER!   Again, it just staggers the mind!

Caio and paka!  (Hmmm....I think I like that Italian and Russian mix for "good bye" and "till next time.")

Rogaine: My Beauty Hero

My hair usually on the thin side, so its default setting was usually short.

For the last few weeks I've been experiencing the weirdest facial skin problems, ones I've never seen before.  Given that I'm constantly coming up with new strange symptoms (emphasis on "strange") it was difficult not to simply attribute the new problems to my CFIDS/ME and/or my fibromyalgia.  However, as I became more frustrated, it didn't sit well with me that something else was being blamed on the DD.

My face was becoming a bit rough, with a bit of bumps going on, not pimples, just bumpy.  Now I do have problems with pores and hyperpigmentation, but really, considering everything, my skin is not too badly off, especially in light of how little care it gets.  I thought it might be stress or any number of things, but nothing sat right.  Then a couple of days ago, my hand involuntarily came across a dry patch on an eyebrow.  What was going on?

Today I decided that despite how awful I've been feeling (oh my, I am sooo the master of the understatement) I needed to give myself a home DIY facial treatment, and a very serious one at that.  I decided to go through my *ahem* rather extensive collection of cleansers, exfoliants and treatment masks and line up my plan of attack in order to cut down on fibro-brain not being able to carry me through the process.  I'm talking serious business!  At any rate, Step One was taking a bath and that's when I suddenly realized the problem - finally!

Not too long ago, after getting my hair, lashes and brows done before my madcap adventure to Malaysia, the people at my "beauty palace" recommended a new shampoo/conditioner/serum system that was made for thinning hair. ("Thinning"?  I had five bald spots - yes, 5! - as described here).  I was told that women who lose their hair from chemotherapy love this particular product line because the success rate was even better than that of Rogaine's. This sounded tempting, despite my great success with Rogaine, because I would be eliminating a step, simply changing to a different shampoo and conditioner. They were out of the shampoo I needed, but had the conditioner and serum and to give the "beauty palace" wonderful credit, they didn't want to sell me a substitute for the missing shampoo, preferring that I buy the shampoo elsewhere, but get the right kind - for color-treated hair in addition to thinning - than get the wrong thing.

Well, I finally got around to ordering the shampoo a few weeks ago and loved it as well as the conditioner. Given how exhausted I was after taking a bath, I never had the energy to try the serum. I didn't even have the energy to use a couple of standard hair products either, ones I use religiously. I was delighted that my hair felt lovely - soft, no frizz problems, just the texture I really normally WISH for - despite the lack of added hair products and I was quite happy with the new shampoo and conditioner. I did feel that I needed to spend a bit more time and product washing my face because I really did not like the idea of all those hair-growth chemicals touching my face, but ignored that little voice nagging me. WHEN will I learn to actually listen to that voice: gut instincts are built into us for a reason, after all, no?

The new shampoo system was Nioxin #4, the kind for "noticeably thinning" hair. I'm not exactly blaming the shampoo as a lousy product, but it does give me pause: why would I want to expose my face to those chemicals, especially given that those with CFIDS/ME and fibromyalgia so often also have chemical sensitivities. If someone were to shampoo my hair the way one does in a salon where you sit back with your head against the sink, the shampoo never touching the face, it might be one thing, but in a bath - I'm not sure that's a good idea. A careful shower might be more successful, but I can't stand in a shower without collapsing, so that's pretty much out of the question.

But having said that, I must hasten to add that to make things worse, I've also had a terrible itching of my scalp problem, going nuts some nights. I had assumed (dangerous thing to do, I know!) that it had to do with my occasional bouts with head swelling, where the water builds up, and just yesterday upped my medication for this problem (as mentioned very briefly here). AND what's really gross is that after just two days of not washing my hair, my scalp was getting some sort of crud that would pop up under my nails as I madly went through scratching sessions. Misery? Oh my, yes, but "we" all know how many cruddy things we put up with and I just thought I was simply going through yet another yucky and gross CFIDS/ME/fibro symptom and annoying problem.

So, I think I'll be returning to the Rogaine treatment I was using before, as described in an earlier post. And I will also go back to the SmartLash for my brows (described here). The brows are starting to thin because I've just had no energy to keep up with them since my adventures - and after all that work! (Bangs head against the desk.) I think I'll wait for a while before I do anything with my lashes since I'm going through a bit of a problem with dry eyes, which started with itchy eyelashes: again, due to the new shampoo system? I have no idea if the eye problems are also connected with the Nioxin, but I'll be watching to see what happens in the next week or so.

So, there you have it: hopefully I now have the answer to this most annoying problem. One down and 8,997,999 to go, give or take a couple thousands.

And before *I* forget, a reminder that the clock is ticking for the Followers Giveaway and a chance to win the lovely Skyn Iceland kit. It's an incredibly great product line, almost a "cult" product line, and if UPS or the postal service can get to you, I'll gladly send it to the winner wherever she (or he) may be. Don't be shy...the odds are greatly in your favor and it's an incredibly easy and quick thing to do. Just go here for the easy-peasy rules and the place to leave your very quick comment. And if you subscribe to my blog and don't have CFIDS/ME nor fibromyalgia, please don't feel shy about entering the Giveaway: you actually almost deserve extra credit as you learn more about this illness and thus become our "goodwill ambassadors"!

At any rate, thanks for stopping by and until next time: I hope everyone is feeling the best they can be, only better!

My First CFIDS/ME Triumph

First day of school for all three munchkins: do they look capable of doing funny things with the lunches packed for them?  (YES!)

Ahh!  It's another challenging time of year for most parents and most especially for most of us in the CFIDS/ME/fibro community.  Today is the first day back to school for many.  As is usual in this country, some parts have started, while in other parts it's only the teachers who are going back and it'll be a few more days before those fresh faces show up, some eager, some not so much.

Each year was different for me too.   Some years I loved going back to school: I loved the cleaning of the slate and starting with the new notebooks, the new pens and pencils. Other years, weren't quite so much fun.  As a mom, once my health started to really interfere substantially with the running of my "self" and I needed to suddenly buy all those new things for my kids and was already having a hard time just getting those kids off to school each day, making dinner each night, plus doing the laundry and the trillion other things a mom does each day while trying to be perky: it was really hard to do it all with my ever-increasing migraines, my unpredictable hours because of the severe insomnia that was really getting out of control, the brain fog getting worse all the time, etc., etc.  (Ahem: back to Happy, Happy, Happy!)

To defeat this every-growing CFIDS/ME/fibromyalgia monster, I started to try to think of tricks that would help me get through each day: my life was turning into one where I was living hour by hour - day by day would have a been a lifesaver, too much to ask for anymore.

So, here are a couple of those tips that I can jot down for anyone needing them, ending with my best one - the game changer - for last:

• First: I organized each outfit for each child in each child's closet by day, with an 8 day supply.  For my daughter, for example, I'd hang out her dresses or OshKosh B'Gosh overalls with cute top to go with it, with the shoes and socks in a box under the clothing rack.  Each day had a plastic ring that I attached to the rod and on it was the day of the week the outfit was to be worn.  To make it more fun, my kids and I would periodically go over what was to to be worn, so that I didn't appear to be such a dictator.  Of course, there was one period when my daughter did decide she was going to dress the way SHE wanted: I let EVERYONE know that what she was wearing was not my choice and was so surprised to find out that everyone with a child my daughter's age already knew it because they'd gone through the same horrific stage.  Misery does love company.

• Secondly: Watch what your kids are doing with their lunches!  I admit it: the kids had a couple of years where they had the most atrocious lunches because hubby was in charge of them and I was too far gone to have done anything about them.  We even got a letter from the school saying, "can you please send nourishing food in the kids' lunches?" at a time when no one worried about fast foods and how bad they were for you, but I had always been a "food nut."  We were puzzled.  Yes, the lunches that the kids went out the door with were bad, but not bad enough to warrant a letter from the school where real crud was served: pizza, tacos, etc, on the days that the school mom volunteers tried to do a once-a-week hot lunch.  Well, we've been learning in the past few years exactly what had been going on: apples that were hidden and recycled each day is just one example.  Further I refuse to go (ie, listen to the kids brag about the scams they pulled over our eyes) as the pictures that the "kids" now start to tell me brings out despair and nausea or just make me want to go into a coma, never to get out again.  It's all a matter of "whaaaaaaaat??????" Scary stuff.

• Finally, don't feel as if you have to sign up for everything that the other parents sign up for.  I found it hypocritical that at one PTA meeting, the school told us about the new program that they were teaching the kids, DARE.  (Oh, this so dates me: it was during the REAGAN years if I'm not mistaken!)  It was, essentially, to teach the kids to not give into peer pressure to say "yes" to drugs, teaching them that for many reasons they should dare to say "no."  All of this was happening while a bunch of sign-up sheets were going around and the parents were essentially being bullied to sign up for every activity from that day to the end of the year as a volunteer.  And mind you, the peer pressure was ENORMOUS. 

Well, it was one of those days where I had run myself ragged already with carpooling, running a million errands during the day and had really pushed myself to make it to the PTA meeting at all, where, for some ODD reason, I thought we would hear about the school plans (like DARE) for the year, what was expected of the kids that year, the school philosophy, yada, yada.  Instead it was all a con game to get those of us gullible/stupid enough to attend to sign up for baking, baking and more baking as well as volunteering to paint the backgrounds for school plays, fairs - we're talking HARD CORE and NO, bought cookies, cakes, etc., were NOT acceptable.  Finally, I'd had enough and stood up and gave everyone there a piece of my mind, saying as diplomatically as possible that the whole thing was hypocritical. 

How, I wanted to know, were we to expect our kids to withstand the pressure of drugs from their so-called friends if our so-called friends were coercing us to sign up for things that we were certainly not able to fulfill?  Furthermore, the kids were not stupid, they would overhear parents complaining about how we HAD to sign up for this and that: we were giving them an example right at home about how hard it is to withstand peer pressure - and we were failing miserably.

The parents and those talking at the head of the library were silent and then after an uncomfortable few minutes, the meeting continued, as if nothing had happened, the sheets continued to be passed along.  Hubby was shocked at my ability to stand up for myself for perhaps the first time in my life in front of a bunch of strangers, in a very exclusive school where both parents worked, the moms lawyers, doctors and such at a time when this was still an unusual thing to do for females.

Well, after the meeting, outside the library, a bunch of parents came up to hubby and me and told us how happy they were that I had spoken up.  I should have been triumphant.  I should have been happy.  Instead I was disgusted with the parents, said something short and sweet to the various parents (like: would have been nice to have had someone agree with me in a lighted room instead in a dark outside area!) and left hubby to deal with the the cowards.

It was one of my finest moments! 

And I did end up volunteering, the way I wanted to, on my own terms, and in the end putting in more hours than many.  Every Friday I would take the 3rd graders in for library hour.  As I became more comfortable with the teacher and she became a lifelong friend, I even ended up spending most of the day helping her out.  But it was my decision, something *I* wanted to do, not something the PTA had forced me to do, a big difference.

So, you see CFIDS/ME/fibro HAS been good for me in some ways: it gave me a backbone and made me realize that I can stand up for myself and it gave me the imagination to volunteer on my terms, not those dictated by MY peers.  It's a good thing to keep in mind as those of you out there go out to a brave new year.

Anyway, I certainly hope everyone's feeling their best, only better!!!  

And at the risk of sounding like the PTA: The Followers Giveaway will be on noon Friday the 24th (New York time).  To get a chance to win, please go to this post and register.  It's all really very easy and will take just a few moments!   Remember I'll mail the winner the beautiful Skyn Iceland kit anywhere in the world that the post office goes!  

Salt...The Rest of the Story

"These are just some of the reasons salt is not always bad for you!"  Just kidding: I have NO idea what I was being so passionate about.

 
It seems that everywhere you turn these days, the health message is that everyone MUST cut down their sodium intake. I, personally, get very offended by this message and call it "politically-correct medicine," an extremely dangerous way to go, not to mention rigid, as well as tunnel-visioned.

Instead, the message should be, know your blood pressure numbers and THEN decide, with your doctor, if you need to cut down on your sodium.

Fifteen years ago, I was at a very dangerous point in my health. Until just recently, it was the absolutely worst period of my health and out of desperation I decided to add the holistic, alternative, homeopathic and every other word you can imagine that describes what "main-stream" medicine is not, to what my doctors and I were already doing.

In the course of that year, 1997, I also went into seriously monitoring absolutely everything I ate, trying many different sorts of diets in order to find what worked best for me. I couldn't care less if a certain diet helped someone else. If it didn't work for me, it wasn't a useful diet for me, something I believed even before I became ill in 1975. If it didn't help me, it wasn't my answer, no matter how "good" it sounded. Ditto with the various therapies I underwent. No stone went unturned.

After being close to death when I started various (and many) holistic therapies - using them in addition to what worked for me in "conventional" medical care - almost miraculously, I started to get stronger - or at least I wasn't at death's door - after about two months. By six months I was actual driving again for the first time in many, many years.

But then suddenly I started to take a backward turn with passing out, frequent falls, the stars in my eyes upon getting up, the blacking out. No one could figure out what was going on. I could no longer drive for fear of a car accident.

Finally, a month later, a massage therapist, who wasn't even one of the people I went to at the holistic clinic, happened to overhear me talking to a fellow patient and heard me say that in addition to quite a few supplements, I was also taking garlic capsules every day, not realizing that one of the touted "benefits" of garlic is blood pressure reduction - fibro-brain, anyone?

Bingo! My already low pressure was made even lower by the garlic - and dangerously lower. Instead of my normal 90/70 - on a good day - my BP sank to 70/50 or even lower on bad days. The fact that I have orthostatic intolerance, each time I sat up my BP would lower by 10 points, and when I actually stood up, my BP would lower by yet another 10 points, getting my BP down to 65/50 (or even 60/45), a potentially lethal situation. Now getting out of bed was actually a danger to my life. (Note: I ran these numbers by my doctor so that there are no mistakes in writing them here - I do realize that they sound more like fiction than fact.)

A couple of weeks later I happened to mention this "discovery" to a friend of mine and she quietly told me that her father had died because of low blood pressure. I subsequently found out that low blood pressure in the past was often a cause of death. For those who remember the movie "Marty," the father of Ernest Borgnine's character also died of blood pressure that was just too low.

Now, no one thinks that someone with normal blood pressure shouldn't be concerned with sodium intake, especially if processed food is part of one's diet. However, if you eat healthy food, cooked and prepared by a person, not a company, your sodium intake will not, most likely, significantly affect your blood pressure.

However, if you have low blood pressure, you DO need to watch your sodium intake - you need to get enough salt to raise it to where you are not constantly passing out! (For some of my more spectacular falls, see a funny incident I posted before about one of my "better" falls here .)

My BP is so low that on those occasions when I throw caution to the wind and give into an Italian sub, I actually add salt to the ham! (Salt on ham? That's a good one! Joke!)  Hubby laughs that I need a salt lick. When things get very bad, I'll pour a bit of salt into the palm of my hand a few times and lick it up. And before you go "yuck," I ask you, how much does this differ from a margarita with salt around the rim of the glass, or whatever nonsense people do with tequila shots? At least there's no alcohol involved, and let's not forget that most with CFIDS/ME/fibro are alcohol intolerant.

So, let's all try to forget "politically-correct medicine," and try to figure out what our own individual bodies need. Keep an eye out for what symptoms you have and don't just blindly follow the advice of doctors on TV or on blogs who have absolutely no idea what your particular body and health needs are.

Perhaps THEN you can figure out how to attack one aspect of trying to improve your health.

I certainly intend to revisit these topics again: PC medicine, finding out what is best for YOU, as well as what your BP may be trying to tell you.

In the meantime, here's to everyone feeling the best they can, only better! Till next time - please take care!