About Me

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

Monday, December 31, 2012

My Big Decision

New Year's Eve in the mid 1970's when I was full of resolutions.

Yes, I've finally decided that I will definitely make a New Year's Resolution list this year.  Normally, I'm not one for lists.  I've found that with my CFIDS/ME/CFS, fibromyalgia and all the complications that stem from these core illnesses, resolutions really are a futile act in frustration.  Last year I broke down and had only one resolution: that is, to look human.  And I failed, dismally.  The surgeries, the pneumonia, the hypothyroidism, and a host of other problems didn't help matters, I must admit.  But it's always mortifying to be on the losing side, even if it's not necessarily your fault.

However, this year I feel that I need to go on the offensive, that I can't expect to survive another year on the defensive, or just going along with whatever comes my way.  This year I'm determined that I will get my life in order as much as possible and will not feel guilty about trying to find happiness, a real "guilt" word in my way of thinking.

So, I've started my list and though it's not complete, I thought I'd share what I have so far.

  • Anyone reading my posts in the last few weeks knows that I'm now in "The Hunt of Red October" mode.  I have good news and bad news.  Hubs and I had a disagreement of who remembered what but it turns out that I was wrong.  That's the bad news.  (I'll throw the guy a bone and say he was right.)  Hubs has, after all, been very good about getting one of the bedrooms decluttered (I couldn't even show you a picture of what the room looked like but imagine an episode of "Hoarders" and you get a good idea.  He's also been cooking his heart out, poor soul who lacks the cooking and baking genes.  So, it's only fair, that I humor him and tell him, "yes, dear, you were so right and I was so wrong."  (Ha! That's going a bit over board. I'll probably say, "yeah, you might have been a bit more accurate than me," and no more.)
The good new, as it turns out, is that I have my meeting with the endocrinologist next Wednesday, not in six weeks, like I swear hubs told me.  No matter, other than I need to start to work on my list of what to discuss. I'm even planning to go into the whole sleep problems if there's time, since I realize how much hormones are at play with sleep, each year with increasing realization on behalf of the medical community of how strong the links are. (See this post for a discussion of this.)  Forget the neuro who tried to convince me for two years plus that rohypnol, the date-rape drug was a good way for me to go.  I think we'll try the hormone approach if at all possible.  Also to be discussed will be my problems adjusting to the hypothyroidism diagnosed back in October and the fall-out from my gallbladder surgery, which is still doing odd things to my body.  We normally go up for my growth hormone deficiency, but at the moment, that seems to be the least of my problems - well, other than the fact that I need that HGH working at its best because of all the healing going on in the missing gallbladder area.  The man may run me out of town by the time we're halfway through the visit ... there will be THAT much to discuss and at a very advanced level since we've covered every angle that isn't of the highest caliber already.  (Oh darn...this means I need to do the makeup and bathing and getting dressed routine. I hope I can do all of this!)

  • I've decided that I need to go back to trying some of the things that have worked in the past, specifically, the essential oils that helped me so much, combined with massages.  I only hope that the masseur is still in business and can come to the house.  The myofascial pain, fibromyalgia and migraines have gotten completely out of hand and so the massages are a huge help.  I'm embarrassed to say that it's been at least ten years since I stopped the weekly work-outs.  Adding the aromatherapy blends help the effects tremendously.  I'd like to try some other therapies which have worked before, but I know the risk one runs into by trying too much.  So, aromatherapy and massages it will be!  Baby steps!
  • Knowing what a perfectionist I am and how my surroundings really influence me, especially if they're not right (and we are so far from right that we might as well be on the moon, that's how bad things have become).  Some rooms in the house are jam packed with the things that are from the empty rooms that have been in the remodeling and redecorating phase for at least three years now.  This is totally unacceptable.  I mean, I used to vacuum my house every single day and we have a pretty large house!  The clutter has gotten out of hand because it's so easy to let things go when you've got a mess and you're living a "Green Acres" sort of existence. Furthermore, it's easy to to let things go when spending huge chunks of your life in hospitals as we did when my daughter came down with her sudden onset of a vicious Crohns/Ulcerative Colitis hybrid no one's ever seen before. (Great luck, not!)  I don't know how I'll manage it, but everything has GOT to get done by Easter, whenever that may be.  This has gotten to the ridiculous - and extremely depressing - stage.
  • I also need to find someone to help cook as well as clean the house, not to mention doing some gardening.  Unfortunately, we live in an area where "good help is hard to find."  (Long story!)  People (best friends even) keep their cleaning people's names a SECRET, it's just that bad.  But I need to bite the bullet and get onto finding help because hubs is already a caretaker (who "waters and feeds me") and holds down a job which requires 7 days of work a week.  Furthermore, we are getting too old and body parts are breaking down left and right.  No longer can we go at the pace we've always gone before.  This is something I dread doing: how DOES one find someone in a place where there is very little help, no matter the price?  Wish us luck in this department please!  So, ridding our house of anything extra and getting help.  Yep, this will be the Achilles Heel in the whole thing.  I think finding a cure for CFIDS will be much easier! 
  • I want and need to start making trips to TJMaxx.  We're throwing away too much money on places that I order from on-line and this has to stop.  At the rate we're going, we'll run out of all money before the next year is over.  Besides, I really need to get out of the house.  The number of times I need to go to places like Kohl's and Bath and Body will have to be calculated as to what is a good rate, one that won't set me up for failure, but it has to get done!  This may sound trivial to you, but a real biggie for me.
  • Be more religious and strict about taking my vitamins and getting my nutritionals.  (More on this to come in a future post.)
  • Oh how I hate to say this, but I need to get back to last year's weight. (How stereotypical is THAT?  I need to start eating healthy foods.  Of course, if I can get things worked out with my endocrinologist, I may have a chance of getting this accomplished.  Here's to my endocrinologist being  at his most inspired when I go to see him!
  • And finally, I'll be trying to salvage that one resolution from last year, the one I dismally failed with: to make myself look human.  Wow.  Now that's a tall order!

That's it so far. I'm not sure I can or should take on anymore.  What do YOU think?  Any modifications or any additions?  Any suggestions on how to succeed?  Y'all have been awfully good at giving me advice that I find useful, so here's your chance to get your thoughts in with no guilt associated with it!  Besides, I'm sure we can all benefit from each other's suggestions!

And so we end the year 2012.  I hope we will all have a wonderful, fantastic and thrilling 2013.  I wish everyone a year that finds us all with improvement in our health (from our lips to God's ears, as they say), much success in all we attempt, much happiness and laughter in our lives and perhaps even most importantly, the gift of much love in our lives. Ciao and paka!   See you next year! 

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Sunday, December 30, 2012

It's OK to Bully Fibro & CFIDS/ME/CFS Patients?

I was just about to START my dreaded work/labor of trying to fall asleep when I suddenly had a thought go through my head that has been bothering me for more years than I can even remember. The only reason it came to the surface today was because of the new year coming up and I was thinking about the person I am becoming (see link). To my surprise (though not shock), I'm not sure that I like this new person at all. However, in my defense, I think that it's not just me, but a complete intolerance that is pervading our society.  

It's a problem caused by lack of manners in our society, in general.  It has to do with people ridding themselves of the filter that goes between the brain and the mouth. It also has to do with a very dangerous and insidious form of passive/aggressive bullying, unfortunately, much of it on behalf of the medical establishment.  And make no mistake: it's a dangerous trend because this negative and even "ridiculous" picture of "us" trickles down and more often than not, influences how our friends, family, co-workers and just about everyone whom we come into contact with in our lives, treat us.

I really did not want to end the year on a negative note, but in thinking about things, I thought that perhaps this isn't as pessimistic as it is empowering.  And boy, we with CFIDS/ME/CFS and fibromyalgia and indeed, all "invisible illnesses," need all the empowerment we can get!

But first, the background, because if my readers know anything about me at all, it's that there's almost always a backstory which leads to the topic I happen to reflect upon. (In other words, I ramble on a bit too much! But some good stories come out of it, no?)

I'm puzzled yet again and am more determined than ever for my "Hunt for Red October"  and changing from the defensive to the offensive military-like plans which my GP and rheumy have put together for me.  We're bound and determined to try to get to the bottom of whatever it is that is "new, majorly wrong with me," something we've not had a chance to dwell upon because of all the red herrings thrown in our way, along with putting out fires, right and left. (See link about the "Invasion")

However, this illness, this cursed core illness of CFIDS/ME/CFS! Just as I thought I was making strides in the not falling and walking department, on Saturday I found that I was again too weak to walk the few feet needed to get to the bathroom.  I'd already been holding my breath for my appointment in six weeks to see my endocrinologist and have even thought I might give him some sort of succinct report, bullet points and all, in order to get through everything that needs addressing within a reasonable amount of time, an hour in the past, who know what now.  My ankles are frozen again and THAT adds to the walking difficulties in yet another way.  At any rate, back to topic: I've even had to start brushing my teeth in bed.  Hubs helping me walk is not awfully successful: it's all dead weight and really, with the orthostatic intolerance (and probably a host of other factors) I doubt that anything short of a stretcher would do.

I must admit that I'm beside myself.  I really am finding that I'm barely able tolerate this yoyo existence.   One day I'm getting better, the next I'm sicker than I've ever been before - and that's saying  lot for a 38 year history!  I'm definitely in a downward spiral, no matter how many pep talks I try to give myself and famiy. (Back to this post again for the "Up! Up! Up!" talks I force on my family.)

My "good" days aren't too awful, relatively speaking.  I can't get out of bed with the exception of going to the bathroom or sitting at my PC for a couple of hours - that is, if a pain killer helps me and is successful that day.  But I'm having major pain, weakness and migraines - not helped by any of my migraine meds - on a daily basis now.  I sit at the computer in the way a woman does her LaMaze for childbirth, as a distraction if I can manage it.  TV is certainly not keeping me concentrated on anything - though there is great hope for an hour each Sunday once Downton Abbey arrives here in the States. ;)

On my bad days, I feel as if there is no skeleton within my flesh.  I can't stand up. I feel like it must feel to walk on one of those planets where the gravitational pull is enormous.  I try to up my increasingly low BP with salt, but that's just not working much any longer. My nausea is a constant companion.  And yet half the things going on in my system I don't even register because my body is so overwhelmed and too ill to take it all in at once.  

But worst of all, I find that I'm becoming a person I don't care for.  I feel angry, frustrated and have no patience whatsoever.  I used to be a daughter of the South who would rather poop in my pants in public than say a harsh word to anyone, but now I have no patience with anyone who makes remarks such as "if only you would...."  And oh how I've never been able to suffer fools gladly, a huge defect in my character, I know.

However, if someone says that they are feeling their age too, I snap at them, unable to endure the platitudes any longer.  If someone (like an old college friend) makes a joke about my health, I can no longer pretend to find it amusing and "take it," but go into a Southern attack mode.  I have absolutely no patience and would like to smack people who offer me advice, especially in direct messages on twitter... 

How STUPID do they think I am?  They have no idea what stones we've dug up in the past 38 years, have no medical training, have no idea what my history is, have most likely never read my blog.  Yet "they" are so rigid in their thinking that they think, for example, that I will miraculously be better from occasional B-12 shots.  Surprise: I get a B-12 shot on a daily basis, but that is not good enough and so I  get crossed examined about other nutritional aspects which we've, my doctors and I, have covered in great detail over the years.  I even get a personalized version of a Myer's Cocktail a couple of times a month: how many can say that?  It's like these people have a bone that they won't let go of!  If it's not vitamins, then it's that if I get my hypothyroidism under control, I'll immediately and magically be cured, though my hypothyroidism became an issue only a few months ago and has been monitored by both allopathic doctors as well as homeopathic doctors, and everything in between.  

I thought that the turncoat medical CFIDS and fibro specialists were rigid in their thinking.  I'm finding that friends, extended family and twitter followers are even more rigid in their fanaticism.  And do they even think at all about what they say?  They just blurt things out, like a knee-jerk reaction.  God save us from these converts.

But I do want to say, and make it absolutely clear, that for the most part, everyone's been absolutely wonderful and supportive with advise.  I especially love the comments and suggestions I read here on my blog and my Facebook page.  These are comments which are diplomatically posed, by friends/supporters/members of my blog who have some idea of what is going on.  These comments I truly cherish because they are made with not only a "good spirit," but knowledgeable and diplomatic ways.  Yes, I've come to truly love all the readers who have written comments.  Some days, they really are what get me (and hopefully YOU) through the day.

And so, I wish everyone a wonderful New Year.  My sincerest hopes are that those who are healthy stay healthy, that those who are ill improve and live the lives y'all deserve.  I hope everyone is feeling their best, only better.  I appreciate everyone who is a member of this little group.  Thanks, guys.  Caio 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!)

Saturday, December 29, 2012

New Years & Goals/Resolutions

It's been a tough year, to put it mildly.  Furthermore, it's been only one of a very few years in a row of incredibly horrid and nightmare-quality happenings in our family - awful stuff which reads much more like fiction rather than like fact.  The sad truth is that if we had ever even considered putting our collective heads together, we couldn't have possibly come up with some of the things which have happened to us in the past few years.  We're all used to my CFIDS/ME/CFS and fibromyalgia and the surprises that these core illnesses bring with them.  What we'd not been prepared for these last few years is the really hardcore health problems which every member in our family has had to undergo, everyone of us in completely different areas of medicine and surgery, but with huge medical problems.  Unbelievable.

However, I am NOT going to be defeated, and I'm certainly NOT going to allow anyone in our family to be defeated!   We have a lot of obstacles to overcome, but overcome them we will.... Even if it kills me, which it might! ;)

I've been on my family like corned beef on rye about the fact that we appear (really, "appear"?) to be spiraling downward and the cheerleader/Pollyanna in me finds this completely and totally unacceptable.  "We're made of stronger stuff," I try to tell them.  It's one of the reasons that Christmas Eve and then Russian Christmas Eve - in January - as well as Eastern Orthodox Easter, are so important to me.  It gives me the opportunity to remind my kids, as well as hubby, what and where we come from, the incredible character and strength of our ancestors.

I've talked and talked to my family - until I often feel as if I'm blue in the face - about how important it is that we now do a monumental feat and start turning things around so that we will now find ourselves in an "upward spiral."  This won't be easy.  We are totally exhausted, though not YET completely defeated.  However, I want us all to find the strength to start putting huge smiles on our faces, no matter what.  Boy!  How my kids hate hearing this  "Up! Up! Up!" message from me.  Oh, don't get me wrong: they STILL love to laugh.  I  pray that we never lose that gift of laughter.  But I want smiles in there too!  Which leads me to...

I normally make up unofficial resolutions for the year.  "Unofficial"?  You wonder what this is and why?  Well, there are several reasons.  I realize that achieving and accomplishing any hard and fast resolution is an iffy proposition, at best.  Last winter, I thought that I'd hit rock bottom with my almost-fatal incident with the compartment syndrome surgeries and all the complications that followed.  However, little did I realize that I was in for a few other dishy surprises and that there were yet other health "problems" to be discovered and dealt with.  (Ha! Understatement of the year, indeed decade?)  

On the other hand, I also had two incredible things happen that I'd never have been able to dream up: starting a blog and flying - literally - halfway around the world, unexpectedly, in order to be at my son's wedding.  (Talk about shocking my kids!  There's little I LOVE more than to shake them up a bit occasionally!)  Of course, I paid a huge price for the trip, health-wise, and most days I feel that this blog will actually kill me.  But these are, all told, GOOD stresses!

And so, this year, with my health more precarious than ever, I want to be realistic, yet I want to push myself a bit.  How to find that happy medium?

For example, I've gained a bit of weight (?!?), thanks to the combination of the newly-diagnosed hypothyroidism and the emergency gallbladder surgery (with pneumonia thrown in for laughs) but I will TRY to lose the added weight, without beating myself up if I can't lose poundage for a legitimate reason.  For me, losing weight is definitely an "upward spiral."  When I can see and record a new lower number seen on my bathroom scales, the number (often, and, unfortunately) dictates my mood for the rest of the day.  If the number was higher or on a plateau, I'm in a foul mood, yet if the number was lower, I'm almost giddy!  (Yes, yes, yes...I'm totally superficial!  Tell me something I don't already know!  Again, semi-joking!)  I want to be VERY happy in the coming year, EXTREMELY happy, so I need to come up with strategies that will help me achieve this goal, given the newest complications.  New plans and approaches are definitely needed here now. Furthermore, I need an "out" in case other stuff hits the proverbial fan and I'm unable to realize this weight goal.  In fact, I need to realize - really and truly realize - that things can really go awry, and more weight can be added, depending on what state my health is in.

So, with all these caveats in mind, I will indeed make up an unofficial/official list of sorts.  I'll give myself the couple of days still ahead in order to figure out what it is that I can realistically hope to achieve to be happier in life, thus, hopefully, making me a better wife, mom, BFF, friend and person in general.  I'll need to think hard about how I'll go about making these changes, without inadvertently destroying myself.

At this point, I do know that a life with better health and thus, fewer ER visits, as well as hospitalizations, needs to be considered as goals.  We also need some time away from our too many stresses, which are literally close to killing us all.  A vacation with just workaholic hubs and myself would do both of us a world of good, I hope.  (Long story there, so don't ask!)  BTW: hubs objects and says he's "dedicated," not a "workaholic"!  Harrumph. I say, "Potato, potahto, tomato, tomahto."

So, I need to put on my thinking cap.  I'll let you know what realistic things I come up with.  Until then, do you have a few realistic goals/resolutions you wouldn't mind sharing with us?

And finally, I hope everyone is doing their best, only better.  Pollyanna here wishes all of you a wonderful new year, full of blessings.  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, December 28, 2012

How Many Deaths Will It Take?

...Yes, how many years can a mountain exist
Before it's washed to the sea ?
Yes, how many years can some people exist
Before they're allowed to be free ?
Yes, how many times can a man turn his head
Pretending he just doesn't see ?
The answer my friend is blowin' in the wind

The answer is blowin' in the wind.

Yes, how many times must a man look up
Before he can see the sky ?
Yes, how many ears must one man have

Before he can hear people cry ?
Yes, how many deaths will it take till he knows
That too many people have died ?

The answer my friend is blowin' in the wind
The answer is blowin' in the wind.

                                               ~Bob Dylan, "Blowing in the Wind"

The year ends on a very tragic note.  A patient with ME, from The Netherlands, died this morning due to the misdiagnosis of her ME and the doctors believing it was all in her head, the usual, though with fatal consequences.  Because of this "psychosomatic diagnosis," what was missed was her metastatic breast cancer.

I've written before that I don't allow myself to cry when it comes to this illness.  However, that has changed today.  Today I cry again for a senseless death. This is something that I've warned about in this blog and have written about on several occasions. In the post Betrayed!, I wrote:

"Throwing CFIDS into the psychological/psychiatric category causes people not to be inspired to look for the real causes or co-morbidities."

I know I must have sounded to some like a loony-tunes person who was totally over-reacting to things and situations which COULD occur, but that's not it, is it, folks?

And will anything be done about this?  NO, of course not!  We had Emily Collingridge's death back in March of 2012 (see link) with one of my very first posts.

We have seen repeatedly that no one really cares if we live or die.  The CDC got away with what it did back when the powers-that-be were finally talked into sending a team to Incline Village, Nevada, after the first cluster broke out.  The NIH got away with it when misappropriating the few funds that could be badgered into throwing us as a few bones, with no criminal charges taken for misappropriating funds.  Why should the so-called experts be called on the carpet now?  They see what they can get away with.

I highly recommend that one should absolutely read the excellent post that Jeannette wrote in her blog, "Thoughts About ME."  There Jeannette describes the Ampligen hearings on December 20 of this year (see link here) and the way even our "heroes" voted against us.  ("Is it that you're afraid of losing your ivory-tower Harvard position, Dr. Komaroff, that's made you into a turncoat," my words and thought.)   Jeannette writes:

"What I hadn’t accounted for in my attempt to predict the outcome of the meeting was that at least some (maybe many) of the 14 committee members would know close to nothing about either the disease or the drug. "

Who could ever have imagined the malfeasance by the FDA's obvious mistreatment of those sick with CFIDS/ME/CFS who were limited to three minute testimonies, coupled with the incompetence of the panel who sat on the board that voted.  Read the post, "A Plane to Catch," for the excellent account of what transpired there that day.  I'm still reeling from the news, but now, today, to add another senseless death to it all?

I'm beyond fed up!  I'm beyond livid.  I'm beyond disgusted.  As I've written a couple of times already (see link) as in my post titled, "P*ssed Off!" I've been sick since 1975 and I've seen nothing improve over the years.  All that's happened is that now a third generation is becoming ill.  This is nothing short of criminal behavior and really, someone(s) should be held accountable.

Criminal.  Full stop.  What else can be said, other than deepest condolences to the family and friends of Denise?  RIP, Denise.

(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: ER & Sleep Survival

No one said it had to be an UGLY duffle bag and you never know: TJMaxx just might carry one!  (And the FDA will spontaneously change their minds about Ampligen tomorrow!)

"It's Friday Tidbits time, it's Friday Tidbits time..."  I'm so sorry I can't write out the music for the musical score (in my mind it's sung to "It's Howww-dy Doody time, It's Howdy Doody time...") but I'm just so thrilled that it's Friday again.  It's been a rough week.  And, yes, I feel as if I'm saying this with more and more frequency each week.  I'll need to work on that: sorry!  I'm hoping that once the holidays are truly over, once the remodeling is done, a cure for CFIDS/ME/CFS and fibromyalgia is found... now THAT'S mighty depressing ... sorry again!!!

But in true, recent family tradition, I made it to the ER yet again.  Old news, right?  But there is some NEW news that I've been holding back until today and that is: this time it went well.  Miracle of miracles, it was as if I had an acute problem, as opposed to the way I usually feel that I'm treated, as the patient with the chronic pain/illness and some sort of murky problems, thus deserving of bad treatment.  Usually, half the time the staff is totally unaware of what fibromyalgia is (or that it's not a made-up illness, as in Kiliwonga Disease, a disease I just made up this very moment) and can't get their heads around it.  Yes, the commercials for a certain medication which features fibromyalgia has gotten us onto the radars of more John Q Citizens knowing about the painful "syndrome," but I am beginning to think that those who work in hospitals do NOT watch TV, so that's not much help.  Forget about them understanding anything about CFIDS/ME/CFS - now THAT is certainly asking for too much. Instead, once the "F" word or the "C" word are mentioned, the staff starts to talk in very loud voices, confusing who is NOT "getting" it.  I feel like telling THEM (and sometimes do) that THEY are the ones with the comprehension problem, not I.  And no, I don't say a word about the loudness until I can see that they could care less about learning anything about these illnesses.  You'd think that after going to the same two hospitals for the past 30 plus years, they'd have learned quite a bit by now, but that is definitely too much to ask for! 

At any rate, the ER visit after the festivities around my bed (because I was too sick to make it downstairs for either Christmas Eve dinner or Christmas Day dinner) we needed to have an ambulance come out to "fetch" me to the hospital.  The men were nice enough, but insisted on seating me in a chair they strapped me down into with the consequence being that my BP kept falling down into the toilet and the men had no way of hearing it at all.  (They didn't see the humor in my "Oh, I must be dead!" joke, humbugers that they were.) They minded me not one iota when I tried to explain that if they could just pitch the chair to at least a 130 degree angle, I wouldn't be getting sicker and sicker with each step and that they might then actually be able to register a BP reading.  By the time I got to the hospital, my BP was on the other end of the spectrum, high out the wazoo (for me) all because of the sitting up part of the adventure.  They've also obviously never heard of POTS or Orthostatic Intolerance.   But they were at least NICE, which is something I always cherish since "niceness" just isn't done much these days, anywhere, anyway, by anyone, or so it often seems.  

But it's time for the Tidbits part of Friday, so on with those bullet points we've all become so fond of (I hope):

  • In trying to reason out why things went so well on the ER front, I finally figured it out, though it took me a few hours once I got home. (The brain's always the first thing to go!)  The very first nurse who attended me was a guy I used to know, the carpenter who'd done quite a bit of work in our house decades ago.  He's always been very quiet and reserved and I think that this new job suits him well and vice versa.  Anyway, he was my first nurse when I arrived and didn't insist on taking my history, seeing how ill I was, willing to wait the two minutes necessary for hubs to park the car and get to us.  Sooo refreshing!  Upon seeing him, I said, stupidly and goofy enough, "are you my G?" and I think he might have been the charge nurse for the early AM hours.  I absolutely believe that he set the tone of the visit.  He didn't yell as he spoke, but was quite quiet and would kindly ask others to lower their voices (gasp!).  
I think that just as a nurse can put a negative spin on how and what things happen as a result of their reportage to the subsequent doctors who see you, while others put a positive spin in their report, G must definitely have put a positive spin on things.  He most certainly knew that I was sick even back when he worked in and around my house and knew that there was no "game" or scam going on.  It's a bit hard to hide or fake illness if you have the same people coming to your house on an almost daily basis for a year plus.  So, I was very lucky with the ER this time around, no snippiness or outright hostility going on by any parties involved.  And I was given pain medication which helped me A LOT.  For the first time, getting a CT Scan was a problem, until they pumped me of something that made me sleep very nicely, thank you ever so much!  Oh boy, how I wish I had access at home to whatever they gave me: it worked well with giving me pretty refreshed sleep, certainly better than I normally get with my very best sleep.  Anyway, onward...
  • I've resolved that from now on, we are going to be realistic and understand that my ER visits can happen very quickly and, truly, with little warning.  So, I'm packing a small duffel bag (or some such) to be put in the front hall closet along with a few necessities.  Now, what kind of necessities could possibly be needed for an ER visit?  Ummm... earplugs and eye mask are definitely on the list, because if you don't go in with a migraine, you'll certainly  have one well within 30 minutes of appearance, absolutely guaranteed!  The blankets and towels we kept putting on my face to shield my eyes from the light (and why is it that staff has no clue that light hurts like heck when you have a migraine?) made little difference.  I most definitely need earplugs to protect my ears from all the noise that everyone seems compelled to make.  And what IS it with the noise?  Do they think it is their God-given right to make as much noise as possible, thus making anyone sensitive to sound feel as if they are living in one of Dante's rings of hell - and I know that I can't be the only person in the ER sensitive to sound!  When I remarked that no one there could ever work in a library, hubs proceeded to tell me that it's been forever since I've been in a library as libraries appear to be as loud as malls these days.  So again, what's with the noise everyone insists on?
I also always forget to pack shoes (I DO have more important things on my mind if I need an ambulance to drive me all of five minutes away!) and when we arrived at the ER door in order to leave for home, it had started snowing.  So, shoes are a must-have for that bag, as well as Dove soap.  Anytime I wash my hands or indeed any other part of me besides my face, I break out in a rash, so Dove has to be taken with me.  (We're not talking big bags, but enough to also hold my Kindle and iPad ... you never know when I might be inspired to write a post!  Haha!)
  • And finally, I happened to mention lamps with toggle switches last Friday (see link here) for easier access to turning off your light at night, especially if you are an insomniac. (Plus see one viewer's comment for the touch pad after the aforementioned post).  Hubs actually found the lamp I needed once he read my post and so I'm happy on that score, blissfully so!  But now we have the whole nightstand issue.  I realize that if you're in bed 24/7 and get out very rarely from that sumptuous bed, then there's often a problem with the nightstand.  Mine was beautiful but completely impractical, so I'm borrowing the guest bedroom's nightstand, which IS perfect, until I can get one that goes better with the furniture in my bedroom.  But  after huge consideration and thought, here's what I think makes the "perfect nightstand":
  • Drawers not too wide as then it's difficult to pull any out one of them from any angle when you're still lying in bed.  I like a nightstand about 24" wide.
  • Drawers need to be tall enough to able to hold a box or boxes of your prescription bottles and other tall necessities.     
  • Drawers should not be too deep or you often lose half the paraphernalia you need to slippage alone, to the back of the drawer each time you open it.  (Can we spell "frustrating"?)
  • I like a nightstand that can hold two lamps.  One lamp is for a higher wattage for seeing things in the room.  The second lamp is only 40 watts and I turn it on as a signal to my brain that we are now preparing for bedtime.  Of course, the signal doesn't usually work, but it gives me a fighting chance at least.  Without it, I'm doomed. 
  • I also like having more than just a small clock on my nightstand, but a radio/CD player/thermometer so that when I start sweating (many times daily) I know if it's me that is hot or cold or if it's the room.
  •  Finally, I also like to have a pretty, opened box on the stand where I can put my lip balm, floss, notebook and pen, as well as other little necessities.  When I figure out how to deal with the cell phone, numerous pairs of eyeglasses, drinking glasses and the TV remote with any amount of success, I'll let you know - in other words, when pigs fly....there IS no solution that really works! 

And so it goes.  I hope that everyone's doing their absolute best, only better.  I hope everyone has a wonderful weekend.  And finally, I wish everyone a Happy New Year, with all the best of everything.  In case we don't get a chance to "speak" before 2013 comes around, I wish every single one of you out there ever so much great health, success in all you do and, most importantly, much love in your lives.  Ciao and paka!

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Wednesday, December 26, 2012

Zebras Rather Than Horses?

"Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace."           ~Victor Hugo 

Yesterday and the day before (Christmas and Christmas Eve, respectively) turned out to be a bit of a surprise, and not just an "Oh! surprise?"  but a  completely out-of-the blue surprise.  At least it was for me, the person who has the dreaded CFDIS/ME/CFS and fibro with a list of complications that reads almost as long as a Victor Hugo novel.  (Which reminds me that I do want to add a page to this blog where I actually list the symptoms of CFIDS/etc and fibromylagia, the symptoms I have, as well as those I've managed to miraculously escape thus far.)

But first, on with what I have at hand.  I've written about red herrings and the major military operation which I've now dubbed "The Hunt for Red October" (see link).  There I explain that I know that I have "something new majorly wrong with me," the condensed version here.  Finally, my GP and rheumy are now trying to get down to the bottom of it all, scheduling in specialists from other fields, but what slows us all down are these red herring which are constantly being thrown in the way.  My GP and rheumy, I believe, as well as even the ER docs, are starting to look for zebras and not horses, so to speak.  Things are just too strange, too weird, too unexplainable, but very annoyingly THERE

Like most of my family, I've been fighting a particularly nasty strain of a GI bug for the past year or so.  OK, perhaps they're not fighting a bug every other day, like I am, but they are fighting it regularly nonetheless. It's the warm winters, I tell you.  Well, that and the "fact" that someone had to have stepped on a mirror and broken it: it's the only reasonable explanation for our cruddy streak of bad health, I tell you!  We have definitely become frequent fliers to the ER and even for hospitalizations. 

Since a couple of weeks ago and the visit my GP and then my surgeon the following week, I've known in the back of my mind that I wouldn't be able to do any cooking or baking of the Christmas Eve Dinner, my favorite day and meal of the year.  Worse, I wouldn't even be up to sitting in the kitchen to command  instruct hubs and daughter as to what needs to be done, explaining the details that are kept out quite unintentionally (Ha!).

You need to understand that Christmas Eve dinner is absolutely sacred.  It's the day with the meal which as a child we were not to eat anything at all until the first Star in the Sky stood out.  (Luckily, we were not on Daylight Savings Time!)  Then, since we were still observing the Advent lent, the 13 traditional food on the Christmas Eve table were vegan.  Some of these foods were made only once or twice a year, so there was a real specialness towards Christmas Eve.  I was always most certainly interested in the food than in the gifts which would arrive the next day.  Better yet, we ended up celebrating two (yes, you heard me, TWO!) Christmases, one on December 25 when we would get the majority of our gifts (and awful gifts they were: dominos, cheap plastic comb and mirror vanity set or pj's and socks).  We were definitely poor.  Then on Russian/Ukrainian Christmas Eve and Day, we were able to repeat the whole kit and caboodle on January 6th and 7th with our Godparents and Grandparents giving us presents on Eastern Orthodox Christmas and all the foods were served once more for Christmas Eve and Christmas Day, the latter with meat, dairy, etc.

Since I've been married (to a Catholic) we've made compromises.  We do the whole kit and caboodle Christmas Eve food, most of which hubs won't even try to taste because he is THAT picky an eater.  As a consequence, we've always had to make a few compromises on which foods would be on the table so that he and my picky kids would have something to "enjoy."

And I am such a Christmas fanatic!  Not only do I cook and bake most years, decorate the house to within an inch of its life (though as elegantly as possible) and then on top of it all.... Well, I had a large dining room table custom-made which will seat 14 people quite comfortably, as well as Christmas China that will serve about 40 people, all so that the kids would never even think of not coming home for Christmas.   Christmas is MAJOR around here!

Well, as they say, "man plans, God laughs."  As much as I've always wanted those kids of mine to never even consider for a moment that they won't come home for Christmas with their spouses and vast numbers of children, the joke's been on me.  Elder son is always living in some most inconvenient corner of the world thinking he's some sort of reincarnated Indiana Jones, but for the fish farming community - or perhaps it's Crocodile Dundee?  Who knows?  He's not around much any longer.  Child #3 has his own thing that he does and that leaves daughter of mine to make it home for the meals.   However, I swear, half the time I think she does so only because she wants to figure out the little secrets of the recipes served for when her time comes.  

So, why am I going on and on about this?   It's because I want you to understand the magnitude of what happened on the day before Christmas Eve.  I was sicker than any proverbial barnyard dog and my daughter had tears in her eyes from seeing me just that sick - actually, since she's seen me almost dying how many times, those tears really freaked me out!  My neuropathy was spreading and painful, most of my hand from last year's surgery was swollen and four of the fingers were now numb, pain moving from my gallbladder surgery sites to other parts of my body and returning, I was experiencing  migraines and body migraines, the list went on and on.  We huddled up together (between unpleasant runs - hubs carrying me - to the other room when necessary) trying to figure out if an ER visit was necessary.  The pain was off the chart, there was new stuff I'd never felt before, and I must have looked like death warmed over.  (And I definitely didn't want to go with chipped nail polish!  Priorities, ladies!)  I finally decided against going, not wanting the nasty "invisible" illness treatment that usually happens when coming into an ER with anything less than an ax through your head.  Funny, I actually saw that once, and the guy was sitting out in waiting room...truly!  (But I digress!)

On Christmas Eve I felt somewhat better (the usual pattern now going on for months) but I finally had to make a "mature decision."  I called hubs up from the kitchen.  Oh my yes, I guess he does indeed love me if he and my daughter spent two days cooking food that they wouldn't for the most part be eating!  (Although that could be a guilty mind and/or seeing how pathetic I looked and sounded.... now those are reason that I do NOT like!)  At any rate he  and #1 daughter came into the room and I told them that there was no way that I'd be able to get down the stairs and then sit at the table eating.  We would have to eat in our bedroom and keep me in bed.  The relief on their face was priceless.  The burden removed from my shoulders was almost miraculous.  

We ended up having a wonderful dinner, laughing, joking and having a very low-key dinner, though with Christmas China, of course.  But what a sacrifice on my part!  We almost never eat in our dining room.  I have a special tablecloth and napkins just for Christmas Eve and then a selection for Christmas Day.  We had to skip the beautiful table centerpiece we'd ordered for the first time in years and not able to look at the Christmas tree which I was finally able to help decorate a little bit - although I managed to break three very special ornaments, plus a foot-tall Christmas angel, cracking her porcelain wings.  Worse, I know that had anyone else done this, I would have been as angry as a hornet whom a crazy person'd had the nerve to disturb.  Yep, it was definitely time to get  back to bed for me.

By Christmas day I couldn't get out of bed either.  We had dinner in my bedroom again.  However, by 3AM, I was so sick that we ended up calling an ambulance to get me to the ER.  There, testing was done and though everything came back more or less "normal," (high BP for me at almost 150 over whatever, up from it's usual 70/50 lately and temp 98.6, up from my usual 95.5).  They did a CT scan with the dye and found that I was "clean" of whatever.  However, they discovered "atelectasis," a partially collapsed part of one of my lung lobes, not surprising with the gallbladder surgery, the pneumonia and perhaps even the "newly-diagnosed" hypothyroidism.  Thank goodness we'll be seeing my endocrinologist in a just a couple of weeks.  To see him will be like preparing for a grad school exam.  I need to write everything out as coherently as possible, in brief bullet points as to what the newest developments have been and then the prioritization I believe is needed, to then be compared to what HE actually thinks.  I swear, I think 5 eight-hour days would not be over-doing it, but alas, I'll have only about an hour.  

A slightly funny thing happened today as I was leaving the ER today.  The ER physician (whom I've never seen before) was almost apologetic that he couldn't find more that was conclusively wrong with me, number-wise, so that he could have admitted me to the hospital.  It as a strange moment because I've not gotten this sort of "feeling" or "hinting" in at least 20 plus years.  He was about my age which would put him into that, "Golden Era" of physicians as far as I'm concerned.  There was something about his being that felt as if he was pretty certain that I shouldn't be going home but up to one of the floors where real workups could be done... something that no longer happens in our era.  It was a very bittersweet fraction of a second, but it was there, and it gave me a glimmer of hope: someone BELIEVED

And so, going back to Victor Hugo's quote, appropriate, given yesterday's release of the movie version of "Les Miz".  Unfortunately, I'm too sick to go see the movie, but I read the book back in 8th grade and loved every minute of it, and have been lucky enough to have seen the stage production a few times.  I do think I've always had it in me to think that it would serve me well to show courage for the great sorrows in my life, while showing patience for the small things, though in full-disclosure, patience has always been a downfall of mine, no matter how much I've worked on that alone.  However, and unfortunately, as a CFIDS/etc and fibro, I have trouble going to sleep at all, a little bit of spoilage in the ointment, no matter how virtuously I may I act.  

And finally, next year I'm ordering a tiny tree for my bedroom as well.  If we get stuck eating any Christmas dinners in our bedroom again, I want a tiny tree nearby that I can see while eating all the wonderful food.  

And so, as always, I hope all are feeling their very best, only better.  I hope that those who celebrated Christmas had a truly special one.  Ciao and paka!

Sunday, December 23, 2012

My Mantra For Christmas Survival

My newest philosophy in life?  My newest "take" in order to not drive myself crazy?  My mantra, now - THAT IS, when I can actually remember to use it?  Tada (Drumroll, please):

"Will it matter in five years?"

And really, there are so few things which will.  However, if I don't think this, just about everything in my life that I can no longer do takes on epic proportions.  Worse, the things that DO matter, do NOT get done.

For example, each Christmas Eve and Christmas is about the same as the other.  There is a tree, and yes, most years it looks so perfect that people often think that a professional decorated it.  I'm too embarrassed not to have the perfect live Blue Spruce with absolute treasures adorning it.  Then there are the presents that cover half the floor of the room.  The hall, staircase, mantles are beautifully decorated with garlands, angels, lights.  I have my Santa collection.  Each sofa and armchair has stunningly gorgeous embroidered Christmas pillows.  The foods at the table are basically the same, year in and year out.

And yet, we manage to NOT take pictures of the table and tree with us involved with the seemingly endless activities of each year.  Yet five years later, I don't care what the presents looked like before the kids went to town ripping and casting paper and ribbons all over.  Five years later, I want to see what my kids looked like at ages 5 or 10, 20 or especially 25.  The tree and the table look more or less the same each year, but we, the family members don't.

I knock myself out, cooking and baking for a week (literally!) for the traditional Russian/Ukrainian Christmas Eve dinner with its 13 traditional vegan dishes, but am so exhausted by the time we sit down at the table that I look like a bag lady.  Consequently, there are few pictures of us on the actual day because hubs and I look like we need some emergency care, and quickly, PLEASE.  We can't be bothered with dressing up a bit.  I can care less about putting on a bit of makeup, much less getting out of my nightgown and into something which makes me resemble someone approaching human.

By the following day, with Christmas Day dinner, we look as if someone has tied a rope around our corpses to keep us in the chairs in order to fill in the numbers at the table.  No one's dressed up - it's just too much.

And yet, five years down the line, I want to see what the kids and hubs looked like.  I'd like to see us dressed, if not in our finest, then at least not in rags!

So, this Christmas, perhaps I can convince everyone, let's apply the five-year rule.   It'd be great to see ourselves actually eating the Christmas Eve kutya we spent enough time and energy making!   It'd be nice to see ourselves actually eating the Christmas turkey we spent so much time cooking.  And Really, do I need to make five or six different desserts?

Yep.  I think that five-year rule should definitely be applied to Christmas.  Furthermore, it doesn't apply to just those of us living with CFIDS/ME/CFS and/or fibromyalgia, or any other person suffering from an illness.  It might actually help healthy people stay that way!

As always, I hope everyone is doing their best, only better.  For those who celebrate Christmas, I wish you the merriest of Christmases, full of joy, the best of health (only better!) and a life full of love and loved ones.  Ciao and paka.  

Merry Christmas!

Friday, December 21, 2012

Friday Tidbits: Bits & Bobs of Help

An idea of the switch-in-the-cord idea,though not the sort of lamp I'd use for bedside. (But oh so pretty!)

It's Friday again and once again I'm so happy to see the week is coming to a close.  (I've written that a bit too often lately, haven't I?)  The family's been stricken with various degrees of the bug which never went away, all because of the freakishly warm winter of last year.  More than ever, I'm personally looking forwards to a few good, hard freezes to kill off as many of the viruses and bacteria as possible, those looming around our town. Last night hubs was almost spitting bullets because I had sheets of sweat coming off of me as I tried to write my post. Today, I can see that the worst is almost over, but I still just want to sleep, though still not sleeping as much nor as well as a "normal" person would.  Everything's relative!

Oh Dyson DC35, how I love ya!

  • In fact, talk about sleeping: I've had more sleep this week than I've had in years!  I wake up and am totally miserable but finally fall back asleep for a minimum of a two-hour nap, unable to keep my eyes open.  Who knew there could be an upside to my flu?  
  • Not too long ago, my BFF and I were on FaceTime and one of the things that came up (we CAN and DO talk about everything, anything and nothing, for hours at a time) was that she brought a gem of a vacuum cleaner.  She recommended that I buy the Dyson "digital slim," dubbed by Dyson to be "the most powerful cordless vacuum."  Well, I finally ordered it from Amazon and their description is no exaggeration, so good, in fact, that I quote:
  • The Dyson Digital Slim vacuum cleaner has twice the suction power of any other lightweight cordless vacuum cleaner in use, making it the most powerful cordless vacuum. It is ideal for quick, flexible cleaning on all floor types, stairs, upholstery and inside the car. 
  • Dyson engineers developed the DC35 for versatile spot cleaning- it’s suitable for every floor surface: carpet, vinyl, tile and wood. It has a motorized floor tool with two types of brushes. Ultra-fine conductive carbon fiber brushes remove fine dust from hard floors. Rotating nylon bristles remove ground-in dirt from carpets.
  • The detachable long-reach wand is made from lightweight aluminium. It reaches high, low and into awkward spaces. You can also remove it and use DC35 as a handheldA docking station conveniently stores and recharges the machine when not in use, or the battery can also be recharged separately from the machine."
was thrilled to see that it was all and more than BFF (and Dyson) had described.  It's especially good for anyone who is sick and can't do much.  It breaks down into small parts and you can actually do stairs with a minimum of effort.  There are no pesky cords to mess around with (I absolutely have an OCD-like loathing of cords of any sort) and can grab it quickly for a small job like the carpet that's by my bed, without worrying about overdoing it.  And because it's so easy to use, you end up using it a LOT!  (Actually, it's quite addictive!)  For more on this miracle product, see this link.  It's worth every penny!  Check the before and after Christmas sales as BFF found a 20% off sticker price on Black Friday weekend, too late for either of us, alas, though we're not at all remorseful because it's just THAT incredible!  And a note: I had a bit of a sparkle and glitter episode from some Christmas ornaments we recently bought.  It was EVERYWHERE.  The Dyson DS35 took on the mess as if it were fighting the merest of jobs.  Phew!  

  • With Christmas quickly looming ahead, I'm not sure we'll even get to finish the trimming this year. As soon as the lights were up on the tree, the ER runs started in.  It's a rather nasty GI bug. Forget about the outside of the house: we've only slapped a wreath onto the front door, this in a neighborhood and town known for its "city of lights" reputation with well over a million tourists coming in for the festivities.  Frankly, I'm surprised the neighbors haven't run us out of town yet. (I'm certain that they're giving us a year's grace period before doing so, so we have GOT to get back on track by next year!)  I'm trying my best to be mature and realize that hubs and I are no longer young enough (what???) to do the outside decorations ourselves and will have to start looking for someone to do the honors next year.  I suppose, too, that that IS the responsible thing for the person with CFIDS/ ME/CFS and/or fibromyalgia to do, though how I hate giving in.  But, it's all about "health credits" and "spoons" now. 
  • And finally, such a seemingly mundane "little" thing which is driving me loony-tunes.  I'm looking for the lamp I had by my nightstand before we'd temporarily moved up to the attic.  It was the sort that has the on/off switch on a cord and, it turns out, it's such a great feature to have.  The on/off switch would rest against the side of my nightstand and it was so easy to just move my hand over ever so slightly and have the light off.  Instead, now I need to reach all the way over, through a jungle of items, trying not to knock anything down as my hand searches for the actual lamp in order to turn it off in the "usual" fashion.  Nine times out of ten, it wakes me up if I'm just about to fall asleep, often with a bit of a disaster as things fall over. With the little cord by my side, it was so easy to turn the lamp on and off... absolutely wonderful for the insomniac. If you have trouble with sleep and get upset because of the lamp issue, consider the lamp with a (toggle?) switch on the cord.  Oh my: who knew that there IS a wire out there that doesn't get on my nerves, but the very opposite.
And that's it for the day!  I hope that everyone's doing their best, only better and enjoys the weekend!   Ciao and paka!

Thursday, December 20, 2012

Three Fibro-Brain-Proof Beauty Products

The funniest thing happened to me the other day: I ran out of time, as well as steam, when getting ready to see my surgeon about a breast biopsy.  Now, getting to go anywhere takes me a good three hours - thanks to my CFIDS/ME/CFS and fibromyalgia-addled brain and body.  Consequently, I try to get as much done as possible ahead of time, now 24 hours ahead.  Yes, folks, that's how long it takes to make me look anything approaching human!

So the day before, I put out as many items ahead of time as I could, including the toothpaste and toothbrush, right through which shampoo and conditioner I would use, as well as the clothes and boots I'd wear.  (I'll take a Christmas party in whatever shape I can find it in!)  However, when it came to falling asleep that night, I was absolutely bound and determined to fall asleep.  I really didn't think I had it in me to make it to the appointment without any sleep.  By 1AM, I was in desperate straits and decided to sneak in an extra muscle relaxer capsule.  Imagine my surprise when hubs woke me up at 6:30AM  - as requested - in order to start the whole ordeal.

NOTHING helped hubs nor me in the getting-me-up-out-of-bed department.  I was limp, dead.  Worse, all sorts of crazy things were happening to me, including the fact that I was still fighting a bug.  But the "best" part? Even my face was having a hard time waking up - not my legs, mind you, but my face!  I got a bad case of pins and needles. What a dilemma!  I thought back to what I usually do when I come down with pins and needles, but even with my mind definitely in fibro-form, jumping on my face didn't sound like a good option, nor doable when I thought about it.  By 9AM, hubs was desperate to get me out of bed.  Imagine the horror when he realized that I was bound and determined to do my hair and makeup, despite the fast-moving clock. It was time run amuck at its finest and I couldn't think straight: fibro-brain (and a bit more) at its finest.  

But because of said fibro-brain, I ended up discovering that:

  • Laura Mercier Illuminating Tinted Moisturizer SPF 20 can stand alone without scaring too many people off.  In fact, my skin was in good enough shape that I forgot to put on a proper foundation!  I've now absolutely fallen in love with this tinted moisturizer which I'd always thought I could only use as a primer.  Thank goodness for brushes: had I used my stippling brush (beautifully washed the night before) I'd have thought that I HAD used a foundation.  
  • Eyeliner Cream Shaper For Eyes: this goes on so "creamy-smoothly" (as the Clinque website describes it) that it took only a moment to put on my eyelids.  And best of all, there was no smudging.  I use the brown and it supposedly has a hint of shimmer but it's ever so slight which simply gives eyes a nice pop and definition.
  • MAC Eyebrow pencil in "Fling": this has got to be the easiest eyebrow pencil around, small, and no need for a sharpener nor angled brush, which I'm always losing.  I need to order a second one for my bag.  It looked perfect after I got home when I got a good look at what others had seen.
Between these three bits of makeup, there was no sign of any hyperpigmention: what is there was deflected by the three products used.

Sometimes fibro-brain can work in your favor!  Who knew?  I have finally found the holy grail for a minimum when too exhausted and finding myself with no time or energy.  Yes, I added a mascara and a quick blush, but the HERO products I used the other day were the ones I described above. 

And yes, sweet daughter of mine: "Mumsy" DEFINITELY misspoke when telling you she needed an "autopsy" done.  Sorry about the momentary scare I gave you!  We'll have to let the world know about  some of my other notable malapropisms, some real doozies!  Yes, they are indeed almost up there with Yogi Berra's!  (BFF: please do stop laughing! You know I've done MUCH worse!)  I should give a prize to the big one I used in this blog - more than once! - a few months ago.  I've not corrected it because I've been waiting a long time for someone to catch it and say something!

Anyway, as always, I hope all are doing their best, only better!  (Fibro-logic at its best.)  Ciao and paka. 

Tuesday, December 18, 2012

A Weighty Problem

I can't believe that I've never written about a "truism" which refers to me in regards to my ongoing battle with CFIDS/ME/CFS and/or fibromyalgia. It has to do with my weight and how I feel from a health point of view. I've written before that I like to weigh less because I feel better without too much extra poundage.  Yes, this seems like a very basic truth and hardly worth a mention.  However, there is another aspect to this weight issue.

About twenty years ago, I realized that others in the family could tell how I'm doing not just by my white or blue lips on any particular day, or by the changing of my eye color - that they're green when I'm feeling well, but become blue when I'm really sick or in a cruddy mood, the mood usually having a direct correlation with how sick I feel.  Talk about a vicious cycle!  There's an even easier way, an extremely fast way, to tell anyone about "the phase" I'm in: the sicker I feel overall, the heavier I am; the better I feel, overall, the lower the overall number on the scales.  It is such an odd thing, when you understand that it has little or almost nothing to do with trying to lose weight through great willpower or any other means.  It has to do with the following:

  1. When I feel sicker, for some reason I think food will cure all ills.  Two symptoms I have a really hard time dealing with are nausea and sore throats.  Give me insomnia, give me pain out the wazoo, migraines which need hospitalization, just about anything, but please do NOT give me a sore throat or nausea.  When these two symptoms appear, almost all bets are off.  Hubs can't believe that I would want to eat while nauseated, but somehow I always think that I'll find the absolutely right food that will magically cure me. Consequently, I'll eat a seemingly hundred different things which are, of course, of no help at all.  Yet somehow the message in my brain gets garbled and eat I do, to no end.  Nausea I find to be a bit easier to deal with because there are some anti-nausea medications that help, plus crackers and ginger ale will also alleviate nausea to some degree. But on the whole, I try every food and any food, thinking I'll hit the magic "thing," and nothing happens other than gaining more weight. (And I'll bet I'm not the only female with this crazy way of coping!)
  2. I've already spoken about the sleep and weight gain connection in terms of hormones. (See link.)  No matter how much I try to eat as little as possible, the weight gain is there despite EVERYTHING if I don't get enough sleep.  Somehow, I think it's doubly unfair to have this problem, but there you have it. Besides, how fair is anything with this illness?
  3. The better I feel, the fewer medicines I need to carry me through.  Oh there are and most likely will always be certain meds that I'll need, but there are a few that I can cut back on or even perhaps cut out altogether in better stages of my illness. However, there are some that cause me to gain weight and those I'm always game to cut back on in my finer periods.
  4. Now this last observation is one aspect of my severe insomnia which I've hesitated to touch upon because I don't want to set a bad example.  However, in the spirit of being truthful and that knowledge is power (i.e., don't do this!).... If I'm in one of my worst-of insomnia stages and my entire being is falling apart, finding myself only one or two step away from hospitalization, I try to go into a "sugar coma," so to speak.  If I'm extremely ill, or on a "worse than ever patch," I will try to interfere or break it by eating a whole lot of chocolate bars.  (Note: I try to eat very little sugar in any form because this is one food which makes me sicker than I need to be.)  The first time I tried this chocolate approach was as I was admitted to the hospital with a migraine so bad that I needed a CT scan and an MRI.  I have no idea why I asked hubs to get me five chocolate bars from the vending machine - and knowing me, he understood that I MEANT ten bars.  (We call it the "Mr. Goodbar" phenomenon; though we've long ago forgotten exactly how this phenomenon, this asking for less of any food than what I really mean, got this name other than it was a reference to a novel which I happened to be reading at the time.)  Urrr, yes, back to subject at hand!

About seven candy bars later, I blissfully fell asleep for about 24 hours and when I woke up in that same hospital it was minus my migraine.

However, a huge caution:

  • this is a very dangerous path to take because of the impact of so much sugar on the the pancreas,
  • it just doesn't work if I try this too often. My body builds up a tolerance towards too much sugar and
  • imagine the weight issue; despite the fact that desperate times call for desperate measures, etc., I find it difficult to get back to eating no sugar.

Another caution: like many with invisible illnesses, I really hate it when people see me and say, "you look great because you've lost so much weight!"  They truly believe that I'm naturally cured at best, or that I've come to realize that everything I feel is exaggerated or "all in my head."  How do I know this?  Well, it doesn't take a rocket scientist to understand these sorts of things when they are said to your face!  I'm actually feeling cruddy but it's all a matter of relativity.  I want to say, "bite me!"  However, I do realize that that's rather rude.  

Furthermore, how do you explain that despite the number on the scales, you're still too sick to do anything but be in bed and wander out of the house only about once every month or so - and then only because you need to see your doctor - with no one seeing the consequences of those hours of being out and about?  Ah yes, the joys of "invisible illnesses."  I yearn to yell, do you honestly think that I choose this weight, because no matter the number, I'm still overweight, be it because of meds, having to do too much, or the phase of earth aligning with planets.  (That last part is a feeble attempt at humor.)

How do YOU feel about this observation?  Does any of it hold true for you?

At any rate, as usual, I hope everyone's feeling their very best, only better.  Ciao and paka.