Lupus & DHEA

About four weeks ago, I wrote a post about hormone deficiencies in fibromyalgia, specifically Growth Hormone and DHEA (Dehydroepiandrosterone).  I made a point of mentioning that levels of these hormones, or their by-products, are usually measured by blood tests and that these hormones are prescribed when deficiencies are discovered. However, because I've realized via twitter just how many lupus patients also have fibromyalgia and because for various reasons, lupus has long been on my personal radar, my ears perked up when I discovered that DHEA is used in lupus, though differently than it is where fibro is involved.  In other words, DHEA is "different" for lupus treatment.  When I heard my rheumy say that DHEA is prescribed for many lupus patients without a base line blood test for DHEA having been drawn, I was hooked, not to mention almost shocked. The "almost" with "shocked" is added only because really, with lupus, not much is "normal" at all.

To get back to the DHEA matter, I also found this interesting since too much DHEA can cause facial hair growth and acne, side-effects which are quite undesirable for women. In that earlier post when I mentioned that I'd been on and off of DHEA for a few decades (link), in the interest of brevity I didn't mention that I know my DHEA level is getting too high and that levels are now "fixed" until my next major health crisis comes along by the much increased peach fuzz on my face.  Being practically hairless on my face, it's a shocker to see anything show up in the "beard" area.  Actually, you'd think that when I have no "peach fuzz" whatsoever, it would be signal to me that my DHEA is low, but we're talking about moi here, the "queen of no short-term memory," after all!

But back to DHEA and lupus.  Unfortunately for the female of the species, it is women who tend to get lupus far more often than men.  (Yes, walk into a rheumy's office and you see about the same female to male ratio as you get in the audience of "The View" - or in an ob/gyn's office for that matter: take your pick!)  Normally, when a doctor prescribes a hormone to someone who is deficient in that particular hormone, the doctor prescribes it to make up for a deficiency.  Pretty straight forward here, right?   However (and you just knew a "however" would come sooner or later!) when it comes to women and lupus, DHEA is often prescribed to them even though they may actually have normal levels of DHEA.  Interestingly enough, DHEA is ordered for them without blood levels having been measured, in which case the DHEA is intended to act like a drug (medication).   Consequently, the DHEA in lupus has effects beyond simply maintaining the body's hormone balance. Why do they do this, pray tell?  At first glance, it would seem so irresponsible and reckless!

It all comes down to the effect of sex hormones on patients with lupus.  The more "female" a woman is, the more likely her lupus is going to be severe, and possibly life-threatening.  This "phenomenon" became known over 30 years ago when animal studies were done and data collected.  There is a strain of mouse which develops pathology that is almost identical to lupus in humans.  These are NZB/NZW (New Zealand Black/New Zealand White hybrid) mice, which have been extensively studied in order to gain insight into lupus in humans.  When the ovaries are removed from the female mice and the mice become less "feminine," they live longer and have less kidney disease than their female counterparts.  On the other hand, if the testes of the male mice are removed, they die sooner than their male counterparts.

The same pattern holds true with hormone injections.  If you give male hormones to the female mice, the development of lupus is delayed and they live longer.  If you give female hormones to the male mice they die sooner because they get lupus earlier than their male counterparts.

DHEA is made by the adrenal glands of both men and women (humans).  But men typically have much higher levels than women until advanced age.  That being the case, medical investigators decided to treat female lupus patients with DHEA to make them less "female."  It seemed to work and lupus patients receiving DHEA seem to fare better than they did before they started getting their DHEA.

It actually made a lot of sense since those women with lupus who became more "female" by taking birth control pills or becoming pregnant faced horrible complications due to lupus flares.

Before I get into the home stretch of this post (hallelujah!) I would like to point out that in the case of DHEA and lupus, not only should you discuss this with your physician because there are a number of circumstances that would preclude you from taking DHEA.  Furthermore, the DHEA should be bought from a compounding pharmacy to insure the highest quality preparation possible, vis a vis, consistency and excellent bioavailabily.

Here is a prime example of a hormone being used as a medication to treat a disease instead of a supplement to normalize the body's hormone status.  Even though some of the women with lupus receiving DHEA develop facial hair growth and acne, most would prefer these side effects to having a miscarriage or needing to go on kidney dialysis.  Moreover, an added bonus of taking DHEA for lupus is that the disease becomes more easily controlled, allowing the patient to often get by with less medication, including prednisone and it's humongous list of potential side-effects. 

Even though fibro is found in more women than men my rheumy told me that the only time he uses DHEA for fibro patients is when they are indeed deficient in it.  Of interest is that my rheumy has actually measured DHEA in his lupus patients.  Many of these unfortunate women were found to have no detectable DHEA in their blood.  So perhaps giving DHEA for lupus without testing isn't so crazy after all.  It seems to get results.

And you wonder why I find lupus fascinating?

As always, hoping everyone out there is feeling their best, only better.  Ciao and paka!


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Friday Tidbits: Housekeeping

Steel Magnolias Cast 

Never in a million years would I have thought that I'd be writing a post about cleaning products.  It seems like such a 1950's thing to do.   And yet I know that my environment profoundly affects the way I feel.  It's a huge contributor to my mood of the day, week, month.  There's a wonderful line from Steel Magnolias that I absolutely love:

I'm not crazy, M'Lynn. I've just been in a very bad mood for 40 years. ~Ouier (Shirley MacLaine) in Steel Magnolias.

Yes, sometimes I can certainly identify with Ouier's character, especially as a person who has CFIDS/ME/CFS and fibromyalgia, not to mention all the other "illnesses," "conditions," and "syndromes," which I get all because of the old monster.

It's a funny thing about me.  After the Christmas decorations come down, I start in on my "spring cleaning." There's something about the sudden drabness of the house.  Or perhaps it's the opposite: that I'm finally just so glad to get rid of the "clutter" that I want to enjoy the clean lines and a really clean house to match.  I never even realized this until one year when I happened to be doing bills and noticed that February's water bill was double our usual cost.  I called the water department and the woman I spoke to noticed that every February my water bill had suddenly elevated.  So, it turns out that I do a "January cleaning" every year. Who knew?  Not I, that's for sure.

So, it will be time to clean again soon.  Actually, hubs and I got a good start this weekend.  But first I must mention that we don't take our tree down until after the 7th because of the Old-Style Eastern Orthodox Christmas being celebrated so much later than the rest of the world.  By the time the 8th rolls around, I'm beyond ecstatic to be rid of the tree.  Hopefully, this year we'll be able to find someone who'll do the bulk of the cleaning, considering I'm still not allowed to do much, nor able to do much and hubs has too much on his plate.  Again, this hurts, as many things about this situation does.  I'm the odd duck who absolutely loves to clean house. The only chore I dislike is dusting and guess what!  The only thing that I think I'll be able to do IS dust.  Boy, this CFIDS/ME/CFS and fibromyalgia are real kicks in the heads. (Over and over and over again!) Just take away all my pleasure and stick me with the things I don't like.  Wait.  Oh yeah! You - CFIDS/etc, fibro - you already did that, you evil body invader.

And I haven't mentioned that as much of a beauty products junkie that I am, I may be even a bigger cleaning products junkie.  I am absolutely embarrassed as to how many cleaning products I have: baskets and baskets full, though, you guessed it, they are lost somewhere in the basement with the overrun of things from the remodeling.  I can spend hours looking up cleaning products on line, and do!  (Have I mentioned, lately, that I need a life?)

Anyway,  I thought that I'd write down a few of the products that I couldn't live without.

No, I haven't lost those marbles that I've been left with after the CFIDS and fibro monster got its way with me. No, I just thought that I'd mention them since they are so easy to use and we really do need that!  No longer can we take our sweet time about really scrubbing a floor, cleaning windows, moving furniture to vacuum and dust behind said furniture.  We're lucky if we can remember to brush our teeth or have to make a decision as to whether we'll do this and sacrifice that or that and sacrifice this, basically, very close to the spoonie theory.

For those who can still do housework and cleaning, let's just say that I'm green with envy though in the nicest of ways, of course!  (Hahaha, she says!)  But seriously, as our energy is so limited, we really do need to try to get the most efficient of products.  And homemade is not efficient for me, unfortunately.  That ship has sailed, long ago, in fact.  At any rate, I hope that the suggestions listed are not too obvious.  But I love them to pieces, so they're getting included here for those who somehow missed these products.

• Number one on my list has got to be the Mr. Clean Magic Erasers.  Personally, I think they're the best thing since sliced bread (NYC bread, not just any kind of bread, mind you!  I have taste!) They clean a remarkable array of things and do so very well.  I use them all the time on painted surfaces, baseboards, the kitchen, the bathroom.  The only draw-back that I can see is that they do tend to leave a bit of a film which gets just sticky enough to attract dirt and dust, so I always rinse everything with fresh water.  But the Erasers are so easy to use and such a time and energy saver (of self) that it's worth the rinse.  I even used them recently on ground-in dirt on my very old white kitchen floor which needs replacement.  (No, Meslissa, you did NOT hear that!)  Best of all, jobs require  a minimum of effort with these erasers, so good for our poor CFIDS/ME/CFS and/or fibro-weary bodies.

We could have used this a few times. We were NOT smiling! 

• Secondly, I also now use the new micro-fiber cloths to dust.  They don't spread the dust around, but pick it up quite nicely. Last week I made a list on Amazon for a few different types of cloths that seem to have a wax coating, hoping they'll do the job. Hubs ordered a few the other day and ...MELISSA: close your ears and eyes!  (OK, I think she's gone.)  I used them on one rather large bookcase the other day.  Fantastic job.  But we also got the micro-fiber cloths which I'd  loved from Williams Sonoma but they're so expensive that surely there must be a good equivalent somewhere. On the other hand, in my dusting efforts I'll spare little expense as I want to make sure that I don't have to re-dust all the places where the "ash" from the sanding of walls and floors accumulated and I've tried to keep up with the obvious areas.  Better yet, when I washed the cloth in the sink, just rinsing them in some soapy water, the water turned brown.  I love when I can see those kinds of results for my efforts!  Immediate gratification!  Gorgeous job.  Love, love, love mine.

• Thirdly, I'm in love with a window cleaner called Sprayway Glass Cleaner.  I spent a fortune on a can of it at Restoration Hardware about 15 years ago (perhaps $12, see what a crazy cleaning person I am/was?)  Then I discovered that you can get this cleaner at the dollar store for, yep, a dollar. Obviously, we stocked up.)  It's a foaming spray and I love the results and ease. (And I apologize to the Sisters who taught us to use water and newspapers.  My excuse: I'm allergic to newpaper print. They produce migraines.  (Hope Melissa heard that one!)

• And finally, if you have the cash, I love the steam machines that clean everything.  I thought I'd do all my windows one year but that fizzled out after a couple of rooms.  However, the windows I washed shined almost like diamonds for the longest time, much better than the ones a professional did.  I think because it was just plain water/steam, there was no film whatsoever to make dust cling to it.  And an added bonus: everything gets sterilized because it's steam!  These machines will clean just about anything and no chemical products are needed.  In fact, no products are needed period.  So, although it's a (huge) initial out-lay of cash, eventually it'll pay for itself, not to mention the toxins that your house doesn't need coming in.

And that's it.  Here's to cleaning whenever you choose it to be!  Do you have some favorite products that make your job at home just a little bit easier?  We'd love to know!  In the meanwhile, I  hope everyone's feeling their best, only better!  Ciao and paka! 

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 handheld. A docking station conveniently stores and recharges the machine when not in use, or the battery can also be recharged separately from the machine."

I 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!

Friday Tidbits: CC cream & observations

With Chanel's CC Cream

It's Friday and "round up" time when I can freely write very disconnected points and not worry about making everything flow together cohesively.  Ah, what a relief that is for those of "us" with CFIDS/ME/CFS and/or fibomyalgia.  Organizing our thoughts is not exactly our strong suit.  (At least it isn't for me.)

I'm a bit all over the map today, but it's a brief post (and you believe me?), so I think we can handle that. What do you say?  Yes?  Well, then we're on!

Before: No CC cream...

• Not too long ago I wrote that the newest "miracle" cosmetic on the market was coming out soon, that of the CC cream (for earlier post).  "CC cream" stands for "Color Corrective Cream" among other names for the CC part of this new incredible product the beauty world is holding its collective breathe for.  It seems that BB creams are being declared passé and that we now have CC creams to look forward to.  

I was able to order Chanel's CC cream from Amazon but until it came in I had no idea that they were sending it to me from from one of the Asian countries, South Korea, I believe.  Wow!  We really are a global economy! Hubs had to pick it up at the post office and sign off for it so it became a rather big deal.  Unfortunately, I've not had much of a chance to try it out, as I've been too sick, but I have it in mind to experiment to my heart's content as soon as I'm feeling a bit better.  

I did, however, try it out on my hand when it came in, as well as today, and lo and behold, I realized that it would look wonderful on my 30-plus inches of the pretty "unpleasant" scarring from the compartment syndrome surgery of last year.  The Chanel CC cream covered the scars better than I could ever have imagined.  It also blended in with my skin nicely, better than any of the other creams specifically made for hiding scars.  Of course, it may very well be that I'm simply not very skilled at hiding scars and the ease of the CC cream was enough for me.  But it took the redness away and felt very nice on the skin as well.  I promise a review will be coming up soon: if I can just keep from losing more body parts or stop being reinfected with the flu that keeps coming back, incessantly, since last year!  I can only imagine how great it'll look on the face if it can do such a great job on my hand.  (Note: I'm not the most talented in the photography department - especially with "self-photography" sans tripod and using my iPad and iPhone - but my hand really looks so much better after application of the CC cream. I also chose not to use the more graphic - ugly - photos of the before shots, afraid of grossing people out!)

After the CC Cream...

After the CC Cream...

• Ah, a transition where I didn't expect to find one!  (It's the little things that make me so happy!) Speaking of losing body parts (OK...that sounds truly awful) but I received a call from my GP's office a couple of days ago asking me to call them back about some test results.  This wasn't a good sign as I've never had the office call me about any test results in the approximately 20 years I've been seeing my GP.  I did manage to throw it, the message that is, to the back of my mind. By the time I got hubs to call for me (I really, really hate to talk on the phone, "hate" being code for "it's too hard to handle") I'd totally forgotten I had a "problem."  Ah!  The beauty of such little memory!

At any rate, my GP wanted to schedule me for a breast biopsy for the lumps they saw during the mammogram and ultrasound I had taken a couple of weeks ago.  However, hubby and I thought that a discussion needs to be had before I schedule myself for any biopsy.  The lumps, I'd been told by the radiologists, are calcification lumps formed from previous surgery and I thought that everyone was on the same page with no biopsy needed.  Evidently I was wrong and the radiologist supposedly recommended a biopsy in his official report.  So, now we have another round of doctors to see and talk to.  Oh joy!  (NOT!)  How many more things need to go wrong with me?  (Boo hoo!)  I think we need a scorecard just about now of all the things that I've been through in the past 12 months, health-wise.  It's getting to be an embarrassment!   But honestly, I've sort of given into all and find it just too funny at this point - though by tomorrow, who knows where my head will be? I mean, who has such really cruddy luck?  

• And finally, a funny thought occurred to me today.  I happened to think about my ongoing battle with the pores on my face.  (Don't you just love my priorities: CC creams, breast biopsies all in the same breathe?)  Somehow my mind rounded about to the "magic" of twitter, the community of spoonies and the beauty of the supportive blogs out there.  Then the two thoughts collided. (Remember, my brain is where NO one in my family ever wants to get into!)  

You see, a few years ago, I was on a successful roll with washing my face twice each day and absolutely religious about using some sort of treatments to battle my pores twice a day as well.  For most, this wouldn't be much of a hurtle, but for me it was practically a miracle.  So, about a month into the whole routine, I thought I'd seen real improvement in the state of my pores.  Son #1 happened to be passing by and I called him over and said, "do you think my pores are looking better?"  LOL!  I mean what was I thinking when I asked my son for his opinion?  Why didn't I just ask someone's gardener?  

Well, honest son said, "ah...," inspecting my face VERY carefully.  This is the kid who can go out to sea in his line of work and spend hours and hours in the water looking for a she crab for his experiments.  Have you every tried to look for a female crab and not a male one?  It takes a lot of time, patience and hard work. Somehow my fibro-addled brain thought that if he could look for and find female crabs, he'd be an expert at noticing my pores.  "Well, mom," he said, turning me to a better light and inspecting me as if I were under a microscope.  After a good examination, he said, "Nope, the same," and walked off.  And consequently, I stopped all of the hard work on my face for a few years, completely crest-fallen. 

My point?  We on twitter and our blogs are not like my son when it comes to pores and pep talks of "keep on trucking!"  How wonderful that we have people who really give us pep talks when needed and support when we think that everything's just a bit too hard.  

And that's it for the week.  I hope everyone has a great weekend and as always I hope everyone's doing their very best, only better.  Ciao and paka.  

Friday Tidbits: Changing Gears

An old High School game where we definitely needed to change our  strategy: something not easily done these days!

Do you have problems shifting gears?  It's one of the things that upsets me most when when it comes to my "psyche" and it's one of those pieces of information about the wretched CFIDS/ME/CFS and fibromyalgia nightmare that has helped me the most.  (Information is power!)  Once I realized it wasn't "just me," but the illness(es) that made changing from one thing to another so difficult, I could breathe more easily.  That's not to say that I'm finding it a whole lot easier to live with the DD.  It's just that I don't beat myself up as much as I used to, knowing that this is a problem that's a "classic" symptom of this whole mess.

And so having survived what the jaded part of me thinks of as the "dress rehearsal" to Christmas, that is, Thanksgiving Day, I realized today just how much I'm still learning to adjust to living with the DD.  Honestly, I DO love Thanksgiving.  I just wish Christmas came a little later so that we'd have a bit more time to recover from one holiday to the next.  But here are a few things I discovered or rediscovered, all having to do with the "changing gears" problem, in one way or another.

• Do the bath, hair, makeup and dressing BEFORE the day begins.  In other words, don't backtrack if it can be avoided.  Every year I tell myself I don't want to be sweaty for dinner and yet by the time dinner's almost ready and it's time for me to make myself "presentable," I don't have the energy to climb back up the stairs and go back into "clean myself up" mode.  And might I add, that I've not cooked a turkey feast in at least ten years - this from someone who thought that making five desserts was slacking off and I actually did need to hose myself down!  Honestly, what do I possibly have to get sweaty from these days - other than the huge effort of commanding hubby and kids in what needs to be done?  (That last part was sort of a joke!) Yesterday I finally remembered (!) that exhaustion, forced myself to come down "prepared" - and it was great!
• Don't let family (or friends) talk you into going for a bit of a rest before dinner!  Evidently, I was looking a bit peaked and against my better judgement, I was talked into going for a rest, with number #1 daughter doing the push-mom-up-the-stairs maneuver.  (There IS only one daughter.)  By the time I settled into bed, number #1 daughter reappeared to tell me it was time to eat.  Ah!  No more, dear daughter....  Huge mistake on my part, a rookie one at that.  Shame on me!
• If eating at the table is a hardship, try to plan out your strategy ahead of time as much as possible - and try to stick to it.  It's the "surprises" and sudden change of plans when I'm especially exhausted that contribute to the gear-shift problem.  If sitting at the table and eating makes food taste like cardboard - thus becoming a waste of calories - just take tiny portions and "fake" the eating.  Try to remember that you're really there just for the socializing.  I have no idea what got into me yesterday (other than the obvious huge quantity of food) and for the first time in ages, I ate too much at the table.  Well, when I crawled into bed, my stomach was full, but my taste buds were not at all satisfied and I had my "in bed" Thanksgiving dinner as well.  I'm sticking to the old plan from now on!
• "Let's go into the other room for dessert."  This may very well read as a contradiction but this whole mess we're in is a huge contraction.  So, having said that....  Yesterday a new tradition was begun, though somehow I SUSPECT that this won't work QUITE as well if you have a large number of people getting together.  We only had family and so "the other room" this year was my bedroom.  Usually we have dessert at the table, with me about to pass out, literally.  But because the filter between my brain and mouth wasn't working well yesterday, I found myself saying, "why don't we eat dessert upstairs?" It worked out beautifully, especially as hubs was extremely tired from cooking since 7AM with no break.  Yes, TV was awful, but we all had a great time lounging on the sofa and bed and having great, though exhausted, laughs - the perfect way to start burning up those awful calories!

So, having problems with shifting gears?  We still have Christmas and New Year's to get through.  Hopefully, the information here may give you another weapon for your arsenal!

I hope everyone had a wonderful Thanksgiving Day.  I certainly had much to be grateful for this year besides my family's health. I also had another great gift this year: that of the spoonies and the many friends I've made via Facebook, blogging and twitter, old and new, near and far, some very, very far!  I've had great support from so many in a year when I truly needed it, so thank you all - I think (hope!) y'all know who you are!

I hope everyone's doing as well as can be, only better. Ciao and paka.

Do As I Say, Not As I Do! ;)

It's all a balancing act: walking up First Avenue to our apartment in NYC with baby trying to climb onto and off my shoulder!

I apologize for having been MIA since Friday (in case there are masses of faithful readers out there mourning my absence and my ever-so-witty humor *ahem*) - but this CFIDS/ME/CFS and fibromyalgia body of mine has been betraying me at every turn - or so it seems.  This happens to me every single autumn/fall as the barometric pressure changes have their fun toyng with me, whereas the temperature changes do THEIR damage.  MY rheumy told me yesterday that all his fibro patients are absolutely miserable.

This year has been so much worse than in years past.  I daresay that this year is right up there with the second year of my adult human growth hormone (HGH) "deficiency" drama - when I was surviving only on fumes. I finally had to be hospitalized in order to simply keep me alive until all the red tape of approval came in, an almost two-year process when all was said and done. We all worked feverishly on my survival, such a nightmare, especially since we weren't even allowed to pay for the HGH out of pocket until the approval by all parties involved got their act together.

And then we had the whole "compartment syndrome" surgery/fiasco just eleven months ago, when all my organs started to shut down, and everyone just concentrated on keeping me alive (the little dramatists), one of those "worst of" years.  So when I say that this is one of my worst periods ever, I have some pretty good company to compare things to - and I've spared you many more incidents, since I - all together now - am trying to make these posts shorter! ;)

It's even difficult to say how much worse it is this year: 100 times worse, 1,000 times worse, a million times worse?  All I know is that I'm "rather" miserable and sicker than I have been in eons.  

Now, I'm not writing this in order to gain sympathy points or votes - that would be rather silly. What I'm writing about is my reaction to being this "new" sick.  Some include, but are not restricted to:

• My legs are like jello and often can't carry me.  I end up crawling a lot.  I'm like dead weight - if hubby is at home, he tries to help me to the bathroom, but dead weight that insists on falling is not the easiest feat to accomplish.  And no, I don't drink, as one doctor in the ER once tried to ask my daughter behind my back - whereupon my daughter started to laugh her head off - a rather long story I'll spare you.  
• When I sit up to get out of bed, my head starts to spin and I see dark spots in front of my eyes - or light spots - and it feels like it's going to implode or explode - I'm not quite sure which.  
• My pupils aren't dilating and contracting the way they should be, even with no medication in my body.
• My head feels so heavy, as if it's made of some sort of heavy metal, because it wants to hit the closest surface, usually the floor, face down.  If I'm lucky, I hit the mattress and just lie there unable to move at all for about 15-30 minutes, making it quite uncomfortable for the rest of the body hanging off the bed.
• My veins, especially the ones by the wrist start to feel as if they are going to either explode of implode.  
• My whole body starts in with these jerky sways, then jerky shakes.

I think you get the messages.  These symptoms are just the tippy top of the proverbial iceberg. 

However, to make things worse, I've found myself engaged in two behaviors that are doing me no favors. However, having weighed all the options, I've decided that I should go on or just do as much as I can.  Mind you!  DO NOT FOLLOW MY EXAMPLE, but rather as I say, not as I as I do, because, after all, I'm an old bat!  Most out there have their whole lives ahead of them and also have not been ill very long.  For the newly-diagnosed patient there is the problem of whether or not a near-cure could really help, if not a cure, period!  Looking at you, spoonies, I have real faith in the cure being found!!!  But getting back to moi and my self-absorbed self (yes, I do see my failings):

• I've been acting like a bit of an "in your face teenager" daring my CFIDS, ME/CFS and fibromyalgia evil fairy. Just as I did wrong with the "non-stop eating" celebration of the dreaded and surprising hypothyroidism, I'm daring, in a way, the DD "fairy," to inflict more damage onto me like a playground bully, though this bully is so much stronger than any bully from school - as I should well keep in mind.  

• I'm mad!  I'm angry!  I've had it.  I've adjusted, compromised, accepted so much of this stupid, idiotic illness for 38 years and I realize that really, I don't have but so many years left - after all, I've closer to 80 than I am to 25!   I have to do what is right for me and not live someone else's guidelines or dictates, because I've wasted enough time already.  I've been ill way too long and realize that in the next decade or so nothing is going to cure me and nothing is ever going to give me back even 10% of a normal life.  Like the person who got severe polio before the vaccine, I'm never going to get well enough to really live life.  Oh, I'll keep fighting - it's part of my nature and DNA - but I'm also trying to accept reality with what will give me a semi-normal standard of living occasionally.

• The holidays are coming up and I refuse to live a "Green Acres" life, the old sitcom where the couple from NYC buys a house out in the country and can never finish remodeling the hovel.  Our remodeling has been going on for 5 years!  Good grief!  The only saving factor about the kids going away to school was that my house would finally be immaculate.  Wrong: I was soo naive!  I live in fear that the remodeling will be completed the day before either hubby or I keel over and we will not have enjoyed a finally put-together house! (Almost!)

• The holidays are coming and that is a big problem for me.  I do not do well with holidays. I used to decorate the house with absolute perfection, down to the Christmas china, chargers, baking peroshki's and cookies, at least 3 or 4 different cakes for dessert.  We'd have Christmas parties.  Even my book club finally decided that each December meeting would be at my house because (LOL!) why bother at any one else's?  (Fine solution for me as the house was washed and sanitized to a inch of its life anyway!)   

But now I have to figure out a way of dealing with all these emotions, planning what is feasible, what isn't, what I won't give up, what I should.  I do know that I will TRY and do all within my power to drive myself harder this Thanksgiving (and hubby's birthday!) and this Christmas than I've been able to in the last 5 or 6 years, because our family's had incredibly bad luck, as well as good luck, health-wise lately and we have much to be grateful for. I want to fall asleep every night (or day or whenever this dysfunctional body decides it'll give me a break and let me sleep a bit) feeling as if I've accomplished something.  Last night I was able to crawl through two rooms that are jam-packed with everything from other rooms and managed to find 3 "must" tablecloths and linen napkins, was able to crawl to the washer and managed to do 6 loads of laundry.  Hubby took care of the dryer (I trust him with the drying part, but never the washer!) and he folded them away to take to the cleaners for pressing. 

That's three things down and how many hundreds more to go????

If anyone has any tips as to how to get organized for the holidays in the easiest way or hints for getting through it all, or any part of it, period, we'd all love to hear it!  

In the meanwhile, I hope all are doing so very well, their very best, only better.  Ciao and paka.

Fibromyalgia: Is That All There Is?

"The Three Graces" illustration that appeared in the original fibromyalgia criteria study (1990) with tender points superimposed.

I've been asked (more than once) if there is a blood test that will determine if one has fibromyalgia (also known as Fibromyalgia Syndrome (FMS), nasty and degrading little term that's used, "syndrome," no?)  The short (and sad) news is that no, there is no blood tests that will identify fibromyalgia.  However...

...there are certain blood tests that should be run for three reasons: first, to exclude any conditions that may mimic fibromyalgia; second, to exclude if comorbidities exist - that is, to see if other conditions in addition to the fibromyalgia exist; and third, to factor in what would help establish how and if fibromyalgia symptoms can be lessened.

Before we get into the above reasons, I would like to emphasize that in most cases fibromyalgia is relatively easily established by a rheumatolgist or pain specialist knowledgeable in fibromyalgia.  Not all rheumatologists, pain specialists, or even neurologists, however, are equal in identifying fibro and indeed some of the specialists out there who claim to be well-acquainted with fibro are indeed not specialists in the field.  Unfortunately, I know this first-hand as a "professional patient."  (Ha! But sadly also true.)

But getting to my list:

• Fibromyalgia can occur on its own, yes.  For the most part, however, it's a sign that there is something else going on and that cause needs to be checked out. 

• As they say in the medical field, your usual doc starts looking for horses before the "zebras bit" but when it comes to fibro, a medical history is absolutely necessary as it may point out what would normally be viewed as zebras in most any other medical field.  In other words, it's incredible that when it comes to fibro the zebras are actually horses.  For example, adult growth hormone deficiency is often seen in fibromyalgia as Dr. Robert Bennett first described in 1992.   Car accidents can also be a cause of fibro, although often showing up years later. As is seen in my case, HGH insufficiency and numerous other factors have contributed to my fibromyalgia, including my CFIDS/CFS/ME.  However, lupus, osteoarthritis and even cancer - indeed almost any autoimmune disease and infectious disease - can cause fibro, as well as sleep disturbances (the latter described by Moldovsky and Smythe, 1974).

• There are other blood tests that can (and should) be run to see if it's a nutritional problem. A deficiency in magnesium (Red Blood Cell test should be run or the results will be inaccurate) and Vitamin B deficiencies are just two nutrients that can lead to problems with fibromyalgia. I was shocked, for example, to discover by two different doctors that I was indeed vitamin B deficient (trusting soul that I am NOT) and that it can take up to two years to overcome a vitamin B deficiency. 

I've found that after identifying and treating my many deficiencies, my fibromyalgia got much better, but it took a long time (well over two years for the HGH to also kick in) but I need to be monitored all the time because as I've said so often before, things just keep going wrong.

The American College of Rheumatology has published criteria to help the doctor make the diagnosis of fibro.  However, keep in mind that fibromyalgia is not a diagnosis of exclusion.  It used to be thought of as a "wastebasket" diagnosis, but no more! 

It also used to be thought of as a manifestation of depression. That notion has been disproved by many studies showing that depressed patients perform very differently on neuropsychological testing compared to fibromyalgia patients. The two profiles are simply very different.

Your doctor can use the published fibromyalgia criteria to establish whether or not you have fibromyalgia but blood testing can be very useful in the assessment and treatment of fibromyalgia patients.  However, looking into the various criteria (i.e., the evolution of the criteria over the years) and knowing some of the people involved, I must say that I do have a problem with some of the doctors who are in ivory towers and see few patients, who don't take good histories, as well as those who are afraid to touch their patients.  

But then I'm a bit picky, aren't I?

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

Raphael's original "The Three Graces" with the tender points superimposed.