Friday Tidbits: Severe Insomnia

I've stayed away from writing much about my severe insomnia, which one neurologist labeled "malignant insomnia" - a mistake, I know.  It's not quite malignant in the sense that it's not been fatal yet.  However, it's such a huge topic to cover and when it comes to my case, it's absolutely the bane of my existence.  I've long lost count of the doctors I've seen and the treatments I've undergone: the neurologists, rheumatologists, sleep specialists, fibromyalgia specialists, CFIDS/ME/CFS specialists, not to mention going the alternative medicine route with applied kinesiology, rolfing, acupuncture, acupressure, nutritional IV's, chelation and so forth.  The chelation part: I was found to have heavy metal toxicity off the chart and hubs in his cute (!) way exclaimed, "you're a walking toxic waste dump!"  Cute, hubby, cute!  (Not!)

I relatively recently went to a sleep study where I did not fall asleep at all.  Consequently, the studies told us absolutely zilch because one needs to fall asleep for at least 10 minutes in order to get any sort of reading. 

Normally, I can get a few hours sleep a few times a week but I can and often do go 42-76 hours with no sleep whatsoever: perhaps once or twice a week. Then, a curious thing happens: I crash and have what we in the family call a "marathon sleep."  It'll last about 12-24 hours but doesn't come even close to the sleep I've missed and worse yet, no one knows when it will happen.  Exclamations of "she's due for a 'marathon sleep'" rings throughout the house after too long a period has gone by without a long sleep.  I simply want for someone to hit me over the head with a mallet and let me be out for a few days.  

And to make everything truly exciting, really bizarre things occur: one Christmas I had overdone it so much that I fell asleep, finally, after presents were opened in the morning, and stayed asleep until New Year's Eve. Hubs and the kids would take turns checking to see if I was alright, but I would yell out "would y'all cut it out, for heaven's sake?"  You see, there's a squeaky board right outside my bedroom and it gets a rhythm going as each person shifts from one foot to the other in order to get a good look at me.  Now mind you, I remember none of this....  These are the facts presented to me to prove how impossible I am when anyone dares to interrupt my sleep. (Gee, really?)

There are so many aspects which I hate about my incredible insomnia.  Here's a good start:

• No one understands how really bad it is, an understatement.  My last neuro has finally thrown in the towel and recommended that I go to one of the five top sleep centers in the world, my choices as to which.  He's seen me for decades, off and on, and has finally admitted that he's never seen anything like it.  I, in turn, refuse to go back to see him again because he seems to think rohypnol, the "date rape" drug, would help.  Is he nuts?
• How can one make doctor's appointments, indeed, any sort of plans, when one never knows if and when one will fall asleep?  I try my hardest to get some sort of schedule going, but nothing helps.
• The longer I go without sleep, the harder it gets to fall asleep.  Furthermore, the more tired I am, the harder it is to fall sleep.  (Talk about double curses!)
• My insomnia is not caused by obsessive thoughts when I need to sleep.   For some odd reason, I can turn off the day gone by or the day to come.  Instead it is the limbic system being screwed up.  I liken it to a defective light switch.  Sometimes it can be turned on with a bit of a jiggle, but for the most part it just doesn't respond to any cues.
• By taking so many meds, I know I have a great possibility of shortening my life span.I never have my days right any longer because I don't have a division of night and day. It started with Christmas years ago - misjudging when Christmas is.  (Me to hubs and daughter: "You're just messing with my head. What do you mean it's tomorrow?  I thought it was in four more days!")
• Each and every moment and movement that I'm awake is geared towards how it will affect my sleep, whenever it chooses to happen, that is.  I digest nothing that may hinder my sleep - in fact I'm afraid to be found in the same room as any food that may keep me from sleeping.  You never know what may be contagious! (Joke!!)
• My bedroom is and has always been the perfect room for sleeping.  Light bulbs are chosen with care, as are lamps, bed linens and so forth.  A word should be added here regards to hygiene. You're told to use use your bed only for sleeping.  But what is one to do if one is afflicted with CFIDS/ME/CFS and fibro and needs to be in bed a large part of the day due to the extreme fatigue characteristic of those illnesses?  The medical profession needs to come up with better advice for such patients.
• Until recently I read every book on sleep that I thought would not be a total rehash of what's been written about it a million times already.
• I do think that having gone to uni as a literature major - thus great sleep deprivation - didn't help matters.  However, I remember sleeping a LOT in the early CFIDS/ME/CFS fibromyalgia years before I had my three little ones, all within three years.  This couldn't help but damage something within me as far as sleep is concerned.
• And do not be fooled into thinking insomnia is just an inconvenience. For example, it's due to my severe insomnia that my pituitary gland pretty much stopped making any adult growth hormone.

Do you have trouble sleeping as well (understatement time once more!)?  Have you been able to work around it or deal with it successfully?  I loved the "holistic clinic" I drove to for a few days every week for an entire year, until the clinic pretty much imploded. Before going there, I was so sick that I could barely get myself into the car, much less endure a 2-3 hour ride - but eventually I was well enough that I was able to drive myself. If I could find those services, such as the applied kinesiology and gentle rolfing, I'd be back in a heart beat.

In the meanwhile, I hope everyone is doing their best, only better. Ciao and paka.

Losing Weight: Part 2, The Tips

A Macy's Christmas in NYC

Yesterday I wrote about some of the reasons why we with CFIDS/ME/CFS and fibromyalgia tend to put on too much weight.  Today I'm finishing this mini-series with a few of the ways I go about trying to fight the good fight, the one with the scales.

Once I can get my head into being serious about losing weight, I often put up signs around the areas of the house I'm found in that remind me that I'm trying to get back to "good eating.  (Fibro-brain here has the memory abilities of a gnat!)  The reasons are often written down on post-its, one reason or saying per each post-it.  Then if I'm really desperate, I even put all the reasons for losing weight on a larger piece of paper with as many reasons for losing weight as I can come up with.  I think my record list was once about six sheets long, each taped at the bottom of one sheet of paper to the top of the next sheet of paper, with about 70 reasons one year! (HONESTLY!)  I taped it to the back of my closet door so that hubs couldn't see them: no reason for him to see how truly nutty his wife is.  Who says I don't lead an exciting life?

I tell myself all sorts of corny sayings and often make up the wildest reasons if I think they will inspire.  Oh this is really, really embarrassing!  But since it's for the good of all, I'm willing to go there!

• "A journey of a thousand miles starts with a single step."  This I actually had in a frame next to my bed for a few years during a particularly bad period and it helped me with not just the weight issue but with many things I was trying to juggle in my life at the time.
• Knowing that it takes me only three days to really get solidly on my way goes a long way to getting me into the right frame of mind.  I understand and accept that Christmas will be a hang-up, a snag, but I give myself a pass and tell myself that a lot can be accomplished between now and Christmas and that I don't need to keep eating all the wrong foods each day during the "insanity" of the holidays.
• I make sure that I am off all sugar: this happens to be my personal downfall, be it with fruit, honey or the really bad kind, the white stuff.  I feel so much worse when I allow sugar of any kind but it's just so easy to fall into the sugar habit, especially around holidays and birthdays.  Normally, no sugar at all for me and that helps with the cravings and out-of-control appetite I experience all too often.
• I've seen for fifteen years that my body is not satisfied without animal protein and it also needs fats.  Without these, I will eat and eat until my body finally gets what it is lacking.  What a waste of calories before I finally hit what I should have eaten in the first place!  I personally feel that it's best to just accept what your body needs and deal with it that way.  So, for fats, often just a small piece of Brie without crackers is just the thing for me.  
• Once I get rid of a few pounds I make sure I weigh myself each day and write down the weight in my calendar (in code so no one knows the real numbers but me!).  I have trained myself not to get upset if the weight goes up and if I know that the previous day I'd eaten only "good foods" because I do have a huge bloating problem, no matter what my "diet."  (When I write "diet," I mean "way of eating" and not necessarily losing weight.  The right way of eating for me will lead to losing weight the safe and healthy way.)  
• Know what your body fluctuations are and don't allow them to sabotage.  Before I recognized "the bloating factor" that alone could make me think the effort isn't worth it and I'd go grab some horrible food and, all too often, start to "binge."  If you can identify how your body works weight-wise and make allowances, this can be a huge ally in the fight against extra poundage.
• A weight recording trick: sometimes I don't record the weight every day.  If I'm at the same weight as the day before or (heaven forbid) weigh more than the previous day, I don't add the weight to the record and just add the weight in when there has been a shift downward.  Goofy, I know, but it works for me!  
• Drink water if you're hungry.  Often our brains interpret hunger when we're simply dehydrated.  (And we all know how dehydrated those of us with CFIDS/ME/CFS and fibro can get!  Other illnesses also have dehydration problems, including hypothyroidism.)
• Eat a soup instead of a stew.  It fills you up faster and adds liquid to the whole dehydration problems.
• If I can handle it, I try to brush my teeth after I eat.  This gets all the taste of the food I ate out of my mouth and for some reason I find that once my mouth is completely fresh, it often stops me craving anything.  (Or perhaps it's the thought that I'll have to brush my teeth again that stops me from eating more: who knows why our kooky brains work the way they do?)

I hope this helps us all get through the holidays and delivers us to the New Year in better shape than we ever expected: THEN with the new year we can work on getting real progress going.  But we'll be psychologically ready and that is more than half the battle if there are no other medical conditions going on. 

Do you have any weight loss tips that can work for those of us who can't exercise and who have to deal with trying to lose weight while taking medications that have a tendency to put weight on?  Let us know.  We could all use any (healthy) advice out there!

As always, I hope everyone's feeling their best, only better!  Ciao and paka! 


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Losing Weight: Part 1, The Reasons

Thanksgiving at a friend's home: you'd think my kids had lived an "Oliver" life!

There seem to be dozens of ways to gain weight if you're a person who suffers from CFIDS/ME/CFS and/or fibromyalgia and I do believe that I've had the dubious honor of having gained for each one of the reasons at one time or another.  It's a real problem because, let's face it, the way we look DOES affect the way we feel about ourselves.  No matter how much we tell ourselves that all we want in life is to be healthy, there IS the little part that we quietly add, "and to be a normal weight."  It's not surprising because before we became sick, we usually WERE at a decent weight.  

Today I'll just pick out four reasons why we often gain weight.  Some I've gone into before, but others are new to this blog.  Tomorrow I'll post a few tips that have helped me with the ways I try to lose weight, an ever-increasing list.  But today, some of the "causes."  Remember: knowledge (or acknowledgement) is power!

• Insomnia.  If you don't get enough sleep, your hormones go all out of wack and you start to gain weight like crazy.  For more on this, see the post I wrote about this here.
• Medication.  Despite huge vigilance, a few years ago I was on entirely too many medications (around 50!) and we were able to cut the number down, as well as the dosages.  It was hard work and sometimes I think I would do well to go back to a few but when I think this, I also think, "at what price?"  I do have a couple that I may need to start back on but will be talking to my GP about this because I'm not sure of the benefits vs. happiness factor with my weight.  "Proper weight" is not just about looking good - were it only that easy.  It also gives us a bit (ha!) of a self-esteem problem that, like it or not, does accompany the weight issue.  And let's face it, it's hard to lug around extra poundage. 
• Overdoing it.  Every single time that I overdo it - and it doesn't take much to get into that state - my appetite soars and the poundage comes on in spades.  Just sitting downstairs in the kitchen as preparations went on around me on Thanksgiving and then sitting at the table for dinner was way more than my body could realistically handle.  I've not weighed myself since this out-of-control eating started and as a result, I know I've gained at least 10 pounds, if not more.  I've more or less given up until tomorrow since it's hubby's birthday today and I knew that stopping the eating and then "starting again" with his birthday again would just be too much.  So, tomorrow I start to give myself the pep talks and maybe by Wednesday I can start those first three days that are so hard to get through as you're trying to get back to "eating right."  See this post for more on the "eating right" and losing weight the healthy way right here.
• Stress.  We had the painters in the house for two weeks and then there was all that running to the ER and testing and that all proved to be too stressful, which led me to overeating - a real understatement.  Now I have not only the holiday weight to deal with, but all the stress-induced weight gain of something I had a lot of trouble dealing with.  It had to be done.  Now the weight has to be dealt with.  End of excuses or lamenting from and for me!  Get with the program, self! (Unfortunately the work is not completed yet.  I'll have to come up with some sort of way to deal with this better!)

And yes!  Make sure you check with your doctor to see if there is something new going on with your body that is causing the weight gain or lack of weight loss. You may need to explore the possibility that you've developed a new issue that needs to be addressed (like me when my weight went super wacko and it was because of the hypothyroidism) or if there is a medication which you might no longer need or can take in a lesser dosage.  

Weight is the bane of most women, especially in the States.  If you've had the misfortune to add medical conditions, things get that much harder.  Some medications I know make it harder for me with the weight but my doctors and I feel that I have no choice but to continue on those medications.  I try to work around the meds, but that's not easy.  Remember that foremost is your health.  THEN establish the weight which you are comfortable to live with, but be realistic about the number.  

Finally, remember that body image is not always right: we are often our worst enemies and think we look much worse than we actually do.  

And that's it for today.  I hope everyone's feeling their 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.

3 Fibromyalgia Tips (A New Series?)

Four-month-old Irene wants to have a discussion about saying "no"!

I thought I'd start a series dealing with fibromyalgia tips, very short ones.  OK, I know.  You've heard "short" from me exactly HOW many times?  However, if I can pull this off, it would be no more than 3 tips with each fibro tip-dedicated post.

These would be "things" that I've had experience with personally with my severe fibromyalgia and/or "things" my rheumatologist and GP have found to be of help with their own fibromyalgia patient, be it accompanied or caused by CFIDS/ME/CFS, lupus, rheumatoid arthritis or the scores of other problems that can cause fibro.  Some tips will seem obvious whereas some might be a complete surprise - or so I hope. Now I just need to come up with a good title for the "series," in addition to those ideas. (Irene bangs head against headboard today!)

The usual caveat comes in as it does for most blogs dealing with fibro, and indeed any illness.  That is, I'm most certainly not a doctor, though I AM a veteran of the fibro war from well before fibromyalgia was even described.  Furthermore, we have all found ourselves in this rotten situation for all too many different reasons and we're all made differently, so what may work beautifully for one person, may be a complete non-starter or non-issue for another.  So with those thoughts in mind, I begin this new "feature":

1. HGH (Human Growth Hormone):
More research and positive results (the "bad news" kind) in regards to the low level of adult growth hormone in fibromyalgia are seen every day and in staggering/surprising numbers.  Two clues to HGH insufficiency are a "big" belly and slight scratches or tiny kitchen burns which would normally not show up at all, suddenly not healing.  If this is happening to you and no matter what you do to try to remedy the situation, nothing works,  and you suspect a problem with your HGH levels, please discuss this with your doctor. Keep in mind that this is one area which most doctors are not well versed in: it's pretty specific or specialized knowledge, so you may need a bit of documentation/homework to present to your doctor (with as much humility as possible) if you decide this area needs investigation.

2. Disability stress: 
If you're getting stressed out because of bureaucratic run-arounds and nothing seems to be helping in resolving your disability paperwork to come through, consider notifying your local representative.  I realize that this may be more effective in areas not heavily populated - getting to your local representative in places such as Chicago or Los Angeles gives you some mighty stiff competition from so many varied areas of concern. But really, you'd be surprised at how quickly some things can be processed if you go this route if you've been banging your head against the proverbial wall, with no results, paperwork always stuck in some limbo.  Better yet, a one-on-one talk with your state congressman is even more effective than a letter or phone call if you're able to be "out and about."  I'd also venture to say that getting to know your local representative in the first place is not a bad idea.  You just never know when that personal connection might come in handy.

3. Learning to say NO!
Just because you have ALL this time on your hands - which is how the world perceives those with "invisible" illnesses - don't get bullied into doing tons of favors for other people.  Listen up, please: tell those who are insensitive enough to ask for health-draining favors that your doctor forbids it (whatever the "favor" is) and put the blame on him. And this would, most likely, not be even close to a "white lie."  (I have a real bugaboo about any sorts of lies.)  Your doctor, if he's worth his salt, most likely HAS spoken to you about your limitations, talked about "health credits," pacing yourself, avoiding needless stress, the need for rest and so forth.  So don't be embarrassed to evoke doctor's orders when in a bind!  I know that it's hard to go this route because I rarely did so myself - and look where it got me!  Yet WHY is it that we're hesitant about being honest?  Furthermore, that's what you're paying your doctor for: to be your health advocate.  Take advantage of what you're "getting," ie, great advice!

What do you think about these tips or this fibro tips concept?  Let me know ... if the comments box works for you, that is!

Happy Thanksgiving to those celebrating my favorite holiday.   As always, I hope that everyone is feeling their best, only so very much better!  Ciao and paka!


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Diptyque and the Power of Scent

I think we've all had about enough of the medical aspects of the DD: the CFIDS/ME/CFS and fibromyalgia. Perhaps it's time to take a little break and go off into more "frivolous" directions for a bit - after all, we are not our illnesses, we're just trying to live as normal a life as possible with the hand we've been dealt.  Right about now I think we really need to build up those health credits with a bit of rest and relaxation, especially since the holidays are quickly descending upon us and November and December are just bad for your health, period.  Actually, I happen to believe that the holidays should be celebrated every four years like the Olympics since getting through them is an Olympian event.  The other three years can be mini, very "in" low-key affairs.  Hey!  Think about it.  It COULD work!   But I know, I know: back to topic at hand.

In a recent post I wrote that I thought I might have found a new fragrance that I loved and which I would be testing.  Well, the fragrance IS indeed lovely and I used it sparingly this past week since I didn't want to associate this almost-found holy grail with the almost unbearable experience of the past two or so weeks.   

Let me backtrack for a moment.  I've always been affected by smells and there are legends in the family - stories to be carried on by future generations (joke!) - of the little accomplishments my nose has achieved. So, imagine my joy when I discovered aromatherapy and essential oils on one of my trips to England, at a time when the States had no idea what aromatherapy was.  I read every book on aromatherapy that I could locate, took a few "correspondence courses" (I'm embarrassed to admit this last part, but desperate times and all...) and even took a few trips to get treatments in London by someone who'd been highly recommended to me.   It's all a long story, not worth going into all the info.  Let's just say it really worked, in combination with other holistic approaches that I'd been working on with the same sort of dedication to "fix" myself as I had when I was going to grad school:  I DO happen to have a problem with doing things half measure.

And not only were the essential oils healing but the aromatherapy was a match made in heaven: I'm always teased by my family for my keen sense of smell (understatement!) and can drive lesser people crazy.   

Not surprisingly, I'd always been a "light perfume" person, never leaving the house or my dorm or wherever I lived without a scent, but that ended with the "holistic clinic" since no scents of any sorts were allowed - understandably so, due to so many with chemical sensitivities.  And so I got out of the habit of wearing scents and that was a shame.   I strongly believe that just as a bad smell can put you (or at least me) in the worst of moods, a wonderful aroma can do the opposite: it can lift you up, it can even work synergistically to promote healing.  So, for the last year or two I've been on a hunt for a new perfume that would give me the feel I want.

The acid test for me?  When I get home from the doctor's (I mean, seriously, where ELSE do I go?) I quickly slip into the clean nightie that I'd put on after my bath and while doing my hair and face.  I absolutely love the residual scent as the nightie slips back over my head as soon as I hit my bedroom.  I've been out, the smells of the outdoors are clinging to me with their cleanliness and freshness and the lightly scented nightie then becomes bliss.  It's an almost fool-proof way of realizing that you do or don't like a particular scent.  

Well, I may have found the right new cold-weather fragrance.  If not, I know that I'm close to it. 

I'd never heard of the perfume-maker Diptyque, which was founded in 1960's and 70's Paris by three friends. The shop has a definite bohemian feel about it, is very "individual," with attention to the tiniest details - from what I've gathered.  Yet it's incredibly chic and classic at the same time.  I'd first read about Diptyque on one of my favorite blogs, "A Model Recommends," and didn't think twice about it.  After all, scents are so personal and can evoke so many different kinds of moods.  I knew I wouldn't be buying a perfume over the Internet without first having experienced it.  

Well, just a week later, a sample of Diptyque's newest addition came to my doorstep and I thought nothing of it until I remembered Ruth's review on AMR.  Oh, she and her readers were ever so right.  What an incredible Eau de toilette!

The newest addition to the Diptyque line is "Volutes," which was "designed" to evoke the memories of cruises with the exotic smells, tastes and destinations of yore.  Think Gatsby goes to Europe and the Far East, with perhaps Hercule Poirot in tow, catching up with a murder mystery, minus the gore.

One of the reasons I've not liked anything I've sniffed in the last few years from other traditional lines (oh, why can't my fibro-brain think of a more "delicate" word than "sniffed"?) is that so many of the scents are almost identical, mostly because there's something that makes me want to avoid inhaling too deeply, as if afraid of the tiniest (or not so tiny) bit of chemical scent mixed in - the stuff that makes a bottle of fragrance much more affordable.  But when I smelled the Diptyque I wanted to inhale it more deeply.  I wanted to lie down in it and think about things I'd thought I'd forgotten. 

The scent comes in two forms, Eau de Parfum and Eau de Toilette.  Because of the different concentrations used in the two forms, the Eau de Parfum has higher levels of iris and spice whereas the Eau de Toilette has a stronger emphasis on the tobacco and honey - I know, a strange combo, at least for me.  However, it reminds me of my mom when I was a young child with her gallons of honey she'd consume alone every year - and I just realized that she grew the best and most beautiful irises for miles!  On the other hand, the scent also reminded me of one of my professors who used to smoke a pipe with cherry tobacco and the scent was somehow transforming.  I loved walking down the corridors of the English lit building for the pipe smoke alone, the pipe usually unlit, just a hint of it in the air.  The tobacco in Volutes, which I would never have guessed that it IS tobacco, has been described as "smokey and sweet," even "fruity, moist and spicy."  Furthermore, I've read that "Volutes" is actually a scent that can be used by women or men - it smells differently on men and women, indeed from person to person.   Personally, I think that all perfumes smell a bit different on each person, but this one is in a class by itself.  To top it all off, I like how the scent changes from hour to hour.  Fascinating.  And rewarding.  And luxurious.  Ahhhh.....

My only problem now is figuring out which of the fragrances that Diptyque offers would best suit me.  I am so very tempted to go with Diptyque's Philosykos, having read great reviews of that.  Yes, it's a pricey company: We DO have to make a sacrifice to keep out those chemicals and to keep in the "real" ingredients and not fake chemical duplications/substitutes.  However, at the moment, I'm not quite sure how I'm going to go down THAT particular path - ordering a selection that I've not had an opportunity to sample ahead of buying, especially given that I live in the boondocks and that I don't get out much.  However, I'm judiciously enjoying the tiny vial that I have while I try to decide how I'm going to make a decision - because a decision I do need to make.  In the meanwhile, I'm just so happy to know that there are still REAL fragrances out there.  

For a person who is very sensitive to smells, this has been a wonder.  For a person who also has CFIDS/ME/CFS and fibro, this is a godsend!  

As always, I hope everyone is having a wonderful weekend and feeling their best, only better.  Ciao and paka.  

Friday Tidbits: Blubbering Idiot

Oh heaven help us all, it's Friday and that means "Friday Tidbits," no matter how I feel.  I have a real bugaboo about making promises and not keeping them.  At any rate, I finally had the energy to look at my Facebook page yesterday to let y'all know that I'm still around but that it's been a rough patch I've been going through. And the holidays aren't even here yet!  (Irene bangs her head against the desk surface.)  How DOES the CFIDS/ME/CFS and fibro patient survive the season?  I'm not entirely sure.

But I do have a confession to make about myself: I don't allow myself to cry, though that changed this past week.  I just don't allow myself that luxury.  I do cry every once in a while, especially when I'm really angry about something (which just makes me angrier and then I cry harder, of course) but for the most part I try not to allow myself tears when it comes to being ill.  My feeling is that if I start, how will I stop the flood?  Besides, it feels so manipulative.

I'm pretty strict about the policy too.  In fact, I remember that when the kids were around the 10-years-old mark I'd taken them off to a movie for survival purposes one August day before school started.  Now August truly has the most horrid movies.  I think it's because Hollywood realizes that it's the only time that they can hoist off their stinkers upon poor parents who are desperate for a couple of hours of keeping the kids occupied.  Hollywood's not stupid: it realizes that parents have done every activity known to man by August and everyone is bored silly - consequently, any movie at all will do at that point. Anyway, the movie that afternoon - and who even cares to remember WHAT the movie was - had a scene in it that was funny and sad at the same time and suddenly I looked over and saw three sets of eyes staring at me with mouths open.  I asked what in the world was wrong and they all just kept gasped and one finally said, "Mom!  You're crying! You NEVER cry."  I thought they were nuts but thinking about it for the next week or so (obsessing?) I realized that the little stinkers were absolutely right.  I did try to protect them from the worst parts of my illness and really they only saw the bad stuff when mom was in the hospital and they weren't too sure what went on in there.

But in trying to protect the kids from as much of my illness as I could, I had given off this air of things don't hurt me.  Funny how things can be taken.

The purpose of the story?  I guess I just want someone to know that I've worked really hard on protecting my kids as much as I could, though I often think that THAT has blown up in my face and that they don't REALLY get it.  

And I also wanted anyone out there to know that when I say that I cried more this week than I've probably cried in my entire life, I'm not saying this lightly. The pain has been excruciating but I think I could take it were it not for the fact that I'm just so darned tired of everything going wrong with me every time I turn around.  And you know it's bad when there are two reasons that you don't want to go to the ER: 1) because you haven't bathed in so long and REALLY stink because you've sweat so much and 2) because telling the ER staff what is wrong with you is just beyond what you're capable of doing.  Really?  Are those reasons at all legitimate?

And you know: I should learn to keep my mouth shut sometimes. I had praised our ER in an earlier post.  Well, this time it was a nightmare.  The staff was loud, rude and obnoxious. The lighting was horrid and obviously when the "state of the art" rooms were designed, no one took into consideration anyone coming in with a migraine also in tow.  Actually, my migraine was barely a migraine until I got to the hospital and all the noise - with an empty ER!  I was puzzled for a couple of days as to why my treatment was so night and day compared to the last time I was there and couldn't figure it out. 

And then BINGO!  I got it.  How could I have been so blind?   This time I had come in with an invisible and chronic illness that couldn't be measured.  I was no longer in there with a problem which could be fixed by an operation nor could it be measured by any testing. Ergo, the system which deals so well with acute problems, but extremely poorly with chronic ones, was in full blast mode and then some.  Ah!  Now I realize why one of the nurses that I had during the surgery stay had disliked the ER so much!  

Oh, they were generous with the pain meds - I must give them credit where credit is due.  In fact, they gave me so much that I got to sleep for five hours in which I have NO idea what they did, what all was ruled out, mostly because I didn't make notes when hubs told me and I should have, but really, I just don't care this week.  Furthermore, I do think that if I ask hubby one more question about the ER visit he may choose to risk prison and just shoot me.

But the difference was night and day.  I had back pain, chest pain and breast pain, was nauseated - and fed up with that since I'm the first to admit that I don't do nausea and when it hits I simply can't cope with it.  I always say, give me anything but nausea and a sore throat.  (Do I sound like Forest Gump?)  Actually, I've been dealing with the nausea pretty well, since I've had it almost non-stop for about a year but it's been really hard to control with medication for the last six months and besides, wasn't it supposed to go away when my gall bladder was removed?  And of course, it hurt to talk since the incisions in my abdomen from the gall bladder surgery have gone into full pain mode now.  I guess the part where my immune system has something to fight has given up and decided to turn around and retreat.  So after crying all day, while the painters were in the house trying to be very quiet but it is just so annoying to have anyone around day in and day out and hearing every bit of the sanding that goes on (plus, cough, cough cough!), the pain getting worse each day, by Tuesday I was a blubbering idiot behind closed doors.

And really, is there anything worse than a blubbering idiot who doesn't even know what IS wrong because she has no short-term memory at all?  I had to have sounded loony because it was this and that and this and the other.  Thank heaven hubby was able to give some sort of history - after we debated whether or not we should go to the ER for over 8 hours.  The neuropathy in my foot was giving me a hard time, then my knees would go into a pain where they felt like they'd been glued on backwards then another area would take over.  The anti-inflammatories aren't doing their job and my hand which had the surgery is puffed up all the time and hurts like you-know-what because just think of all the nerve endings in the hand.  It was the entire Civil War going on inside me with several major battles going on simultaneously and with one part of the body going into the off-the-chart pain to another part taking that honored place to another.

After arriving home from the ER we were able to schedule a mammogram (yep - 7 years since the last one) and I found myself almost hoping for cancer.  Why?  Well, anyone with CFIDS, etc will understand: I wanted to be taken seriously.  I didn't want that loud talking from the hospital staff as if I were mentally incapacitated, deaf and/or didn't understand English.  And yes, when I asked if they could please use their "indoor voices," there were quite offended and talked louder - the ER staff, that is.  

After the imaging, the radiologist came in and explained that they found some calcium deposits but nothing else.  Well, I wanted answers.  Where had the pain come from?  I had certainly not imagined it and I wasn't in a mood to be bullied any more.  To give the radiologist credit, he did try to talk to me about that one and he tried to give me reasons for breast pain.  When he mentioned that back pain could be the cause of breast pain, hubs and I were so excited that we both yelled out "Bingo!' at the same time.  The back pain had been so bad that I had even considered allowing my rheumy to give me some trigger point injections - but chickened out.  Nothing else was helping out with any of my meds, so I thought, why even bother going through that "ordeal"?  I have enough shots every day and besides, I was hurting from a phenergan shot that one of the nurses gave me in a very odd place on what I thought was supposed to be my bottom, but kind of missed her target.  No, it was time to go home and continue the tears.

They seemed safer than any hospital or doctor that day and all of this past week.

Hope the rest of you all are doing your best, only better.  It helped to talk.  Thanks for indulging me.  Ciao and paka! 

Friday Tidbits: Real Rest

Rest.  It's what I'm always telling the newly diagnosed with CFIDS/ME/CFS and fibromyalgia that they must do. And yet I'm such a hypocrite.

Do "I" rest?  No, not really.  I'm usually in bed because I have no other choice.  I'm usually in bed because I've done something that has resulted in my collapsing into bed, trying to catch my breath, so to speak.  And yet if you go by the number of falls I've had lately, you can see that I've not been too successful about the collapsing into bed part, not quite making it to the bed, missing the bed by a little or a lot, but hitting that floor nonetheless - instead!   Whoops!  I suppose you could say that something has to give!

Well, real rest is when you're in bed and feeling absolutely NO guilt about it. THAT'S when the real healing starts.  If there's guilt, your body is still producing all sorts of "nasties" that I'm not even going to go into today.  Instead, today I'm making a resolution that this weekend I am going to watch as much TV as I can stand - and mindless fun if I can find it.  I'm going to forget about the holidays if I can.  If I decide to clear out the things in my closet that I bought at TJ's, it's going to be because I want to enjoy seeing those treasures and not because I have any sense of "responsibility" to drag my protesting body to the darn closet and make it look all nice - or passable, as in not breaking my neck, for that matter.

And I'll think about lovely things.  I'll think about the beautiful makeup job I accomplished on Tuesday and the new cosmetics I discovered.  How's that for a tease?  You'll need to wait until next week to hear about a couple of products I think are contenders for my personal hall of fame.

I discovered a perfume that I THINK I'm in love with.  Just as we can be influenced by smell in a negative way, we can be influenced in a positive way, and I think I may have found a scent that may possibly put me in a VERY good mood when I especially need it.  This weekend I'm going to even make an effort to have wonderful smells around me to give my body another added break.

And to prove to you that I'm serious about my resting well and good, guilt-free above all else, I'm going to send this post off via my iPad, hence no climbing up and down stairs, but also no picture until the next time I happen to be by my computer - which is something I rarely do impulsively since I do have that fear thing going on when it comes to computers.

So, like the doctor(s) ordered, it will be a guilt-free rest weekend, which I hope turns into a guilt-free rest week.  Now asking for more would most certainly be asking for too much, so I'm telling myself, "baby steps"!

And on that note I wish everyone a weekend that brings them the best possible health they can imagine, only better.   Our thoughts and prayers continue to go out to those who've lost so much in the devastation Hurricane Sandy deposited on the shores of New York and New Jersey.  Looking at the TV reportage makes me realize how lucky we are each and every day, despite our precarious health.   We have our warm homes and our medications to keep our stupid symptoms at bay.   We even have the luxury of old pictures which give us so many hours of wonderful memories.

So with all that in mind, yes... the least I can do is rest, and rest thankful for all I have.  Ciao and paka!


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Comment & Answer: Gallbladder & Thyroid

The countdown is on for Christmas Eve: in days gone by....

In the comments section I was asked a question regarding what sort of thyroid problem I had, as well as a remark about the gallbladder and gallstones. I thought I'd address my answer as a post, given the complexity of the issues, especially when chronic illnesses such as "our" CFIDS/ME/CFS and fibromyalgia are thrown into the mix.  Furthermore, my answer was delayed more than the usual (sorry!) because my neuro-transmitters were again on strike.  I also wanted to check my medical info with a source.  So here we go!

After an initial gallbladder or gallstone attack and ER run in awful pain has been endured and experienced (why we can't experience things like a concert instead of ER visits is way beyond my comprehension) your doctor will normally send you on to the next step, the ultrasound:

• to further ascertain if you do indeed have stones
• to get an idea of how large they are
• to see if they pose a threat to the all-important bile ducts
• and "other considerations."

After that report comes in, depending on what was found during the ultrasound, the next step is the HIDA scan. This test is important because it will tell you if your gallbladder is functioning properly.  In other words, is your gallbladder working at 80% capacity, at 50% capacity, at 20% capacity?

After all the tests are done, a decision then needs to be made as to what to do with the stones and gallbladder.

So to get to what the reader who had a "bag full" of stones wanted to know or was commenting on, here's the rub:

The gallbladder may be healthy and functioning but because of the stones, it may well be having trouble contracting back to its normal size after a meal because the stones are there, taking up space and can irritate the interior of the gallbladder.  On the other hand, the gallbladder could be "shot," working at a barely functioning rate because of a host of problems.  That's why the HIDA scan is needed.

In my situation, my scan showed that my gallbladder was working at only 20% efficiency and that was two years ago.  Medically speaking, I should have had the surgery then.  However - and this is the BIGGEST "however" a woman can EVER make - my daughter's life was in danger and we almost lost her on more than a few occasions.  Our lives completely revolved around her for almost two years, and that included her two adult brothers caring and giving up weeks of their lives to help with the support needed during hospitalizations.  I was by her bedside 24/7 with each hospitalization, with a 20-minute break for shower, etc, once I got too mangy.  We, her family and her many doctors, all fought hard to keep her alive, a long and complicated story that reads less like fact and more like fiction.

The last thing I needed was to be out of commission for three weeks because we never knew when she'd suddenly need to be rushed to the ER locally or to the "major medical center" hours away by ambulance.  Now, what’s wrong with that sentence I just wrote?

Idiot Irene! (I just addressed myself here, not any other Irene!)  A gallbladder operation puts you out of commission for much more than three weeks!

All in all, before going home, my surgeon gave me three separate, serious, in-depth talks on how incapacitating a gallbladder operation is.  That is, I couldn't climb any stairs for a week, one flight allowed after a week, and so forth.   I wasn't to pick up anything heavier than 8 lbs at most and on and on and on. Furthermore, I got hand-outs galore explaining this problem, that anatomy, that procedure, everything but the proverbial kitchen sink.  Sheesh!

My surgeon even gave me recovery statistics for gallbladder surgery which said that after:

• 3 weeks, there is 20% recovery
• 6 weeks, 50% recovery
• 3 months, 80% recovery
• Greater than 4 months, 100% healed.

And yet, I still left the hospital thinking that what I'd gone through was no more serious than a hysterectomy, appendectomy or tonsillectomy.   It took a reader (thank you Melissa) warning me in no uncertain terms how serious gallbladder surgery is, especially when you throw in all the complications of CFIDS/ME/CFS and/or fibro.  That, in turn, led me to discuss the situation with my rheumatologist, who frankly almost lost it when he realized how vast the disconnect was, that I really was NOT "getting it"!

I was about to say that I finally "got it" but just realized that yesterday the painter/wallpaper hanger got here for what will be a two to three week job (stress, anyone?) and since we've known each other for 30 years but hadn't spoken in about four, we had a lot of catching up to do, then me climbing up and down stairs numerous times and that combined with Tuesday's adventures....   Well it's all put the kabosh on me and I wish someone could simply give me some anesthesia and wake me up in about a month - or two....

As to the thyroid: I developed hypothyroidism, diagnosed only a month before the emergency gallbladder surgery.  Now THAT I really had a problem adjusting to and wrote a few posts addressing this as well. I think a lot of people are really tired about hearing THOSE complaints on this blog!  (You can put thyroid or gallbladder into the search box and find more than you'll ever want to hear from me!)

Last night as hubby was getting ready to go to sleep, I suddenly said, "oh no, I forgot about the infections in my two big toes!" as I was thinking about everything I'd been through physically in the past almost 12 months alone.  One of the toes actually had to be lanced because my body wasn't responding to antibiotics.  Now that was an uncomfortable mess!

However, hubby said, "don't forget the cellulitis!"   Oh yeah!  (Or is it "Oh no!"?)  I HAD forgotten about it.   After sitting at the computer one evening when hubs was out of town, I got involved in an alumni Facebook page "cyber-pajama party" where a bunch us were suddenly into "remember when...."  The session really lasted no more than four hours and yet within 24 hours I somehow managed to develop a nasty case of cellulitis of my lower legs just from sitting at the computer for that long.  (Thank you, whomever, for the invention of the iPad!)  Luckily, antibiotics took care of that problem rather quickly.  But cellulitis?  Really????

Honestly, half the junk that happens to me doesn't even register.   Last week I fell down in the bathroom and laid there for four hours, not able to move. (It was actually quite pleasant lying there, taking in the new bathroom, the crazy Irene says!)  It only registered because the next day I had a huge sore spot on my thigh and was puzzled because there was no visible bruise there.  A few hours later I happened to scratch my head as I thought about something and THAT spot was sore, feeling like I should have had a goose egg there, but there was no swelling.  THAT'S when I remembered the fall and lying there for four hours.

Looking back now, a few days later, in 20/20 hindsight, I have to say, AM I NUTS????  Answer: YES!!!!   But in my defense I have to say that this DD is the absolute pits!

And so on that cheerful and nutty note, as always, I hope everyone is doing as well as can be, only better. Ciao and paka!

Progress Report Surprises

Well, today turned out to be a bit of a surprise.  Just as I think I know more or less the things that are "majorly" wrong with my body, the son-of-a gun (my body, that is) throws a curveball at me.  Oh CFIDS/ME/CFS and fibro, you evil, evil rascals  entities.  You betrayers of myself.

I saw my surgeon this morning - you who read my blog regularly MUST remember Dr. Hunk!  Oh, he's just a wonderful gentleman, from a different generation when people had beautiful manners but were ever so strong in a silent dignified way.  But I'm not going to extol his virtues today - I'll have to leave that for another time.  Sigh!

Instead I received more clues as to what's going on with me and I think that in the process I may have shocked the poor man a bit.  Three weeks ago, we didn't have much time, in the scheme of things, to talk about much but the upcoming and then resulting emergency surgery.  Today I found out that he was quite impressed with the fact that I had to have been "in a whole lot of pain" from the chronically-infected gallbladder and one of the stones which was a "whopping" 0.8 cm.  

He'd thought that I was nauseated and constantly throwing up before the surgery (I told him our family's weird that way: we don't do nausea nor barfing) and he said that I would be feeling sooo much better very soon because of the surgery, once the healing sets in "big time."  He gave me another blow by blow of how long it takes your body to recover, how much recovery is done by x amount of weeks, months, etc.

I told him that I was "unusual" in that after surgeries, I've always felt my best, the theory being that my immune system had something to fight, other than my own body.  In other words, my immune system was way too busy fixing me up and boy oh boy, it was nice to get a break, relatively speaking, from too much pain.  Oh, I had pain, but not like I normally have it and I've hardly had to take any pain medication at all as my body heals.  Very weird.  Shows how you DO NOT GET ADDICTED TO OPIATES IF YOU ARE UNDER THE CARE OF A DOCTOR WHO KNOWS WHAT HE IS DOING AND IF YOU'RE ONLY TAKING THOSE OPIATES WHEN YOU ABSOLUTELY NEED THEM!  

But as the appointment went on, I think he started to realize, finally, that the infected gallbladder was the least of my problems.  I told him I had no idea that the gallbladder had been an "outstanding" problem and only felt nausea when seeing too much fruit and didn't have enough meat protein.  Furthermore, the fact that I'd had pneumonia since July and hadn't known it had definitely shocked me - as it ended up shocking him that I'd not realized it too.  He then discovered that I never really had much pain in the gallbladder area but three times, mostly because I'm always going through bigger pains in other areas.  When he saw all the medications I was on, he started getting a better idea of the stress my body is under always, as in chronically, relentlessly, and without end.  Unfortunately. (Though fortunately, in that he understood what was going on, or getting a small picture of it, having an open mind, not rigid in thinking like too many other doctors can be.)

He also got a kick, in a perverse way, from finding out that the pain from the surgery woke me up, not a nurse, and that instead of expecting pain medication to help me with the post-surgical pain, I wanted to walk around - in the recovery room!  When I asked the nurse for permission, she was quite taken aback and couldn't believe I wanted to walk.  I simply thought they wouldn't give me any medication for the pain - having been through the machinations of the "major medical center" and its attitude towards pain with my daughter and the barbaric and lackadaisical attitudes towards pain relief.  He looked a bit put out by the perhaps "inflated" reputation of the "major medical center."  Actually, I saw quite a bit of that at the hospital during my stay and was quite happy to see that the high rating of the "major medical center" may not be as kosher as some would have us believe.

Oh my, YES!  They saved my daughter's life and on more than a couple of occasions. I'll forever be beyond grateful to them for that, beyond any words I could ever express.  Her surgeon was BEYOND superb and I can't praise HIM highly enough, but that is where it ends because they also caused her so much unnecessary pain - off-the-chart pain which added to the stress on her already weakened body.  They are great for a few things which very few places in the world can do, but in my humble opinion, they are really below par for the non-sexy issues which don't help them with their fundraising.  I seem to be under the mistaken impression that they should be superb and better in ALL their departments, but then I guess I'm just too picky!

I also want to add that "major medical centers" in general are definitely overrated.  I saw a commercial on TV recently and it said something about our community hospital being 12th in the country - yes, nation-wide!!! - for coronary efficiency, skill and care in ER centers.  Impressive, but I've always known that our town has superb medical care.  On the other hand, it's great to hear that we're being recognized! 

So, back to Dr. Hunk  my surgeon: I think he now has a new respect for those of "us" with CFIDS/ME/CFS and fibro!  Today he saw a woman in front of him who had been through h*ll and was still able to handle it as if it was a minor irritation.  This is the sort of thing that I want to convey to the world.  

But the body betrayal!  My body never ceases to amaze me, truly.  It turns out we have yet another surprise.  My body, according to the pathology report, is still in renal failure, not having recovered from the near-death experience of last year - a year ago this month - when I had two surgeries for compartment syndrome and all my organs started shutting down and worse.  Evidently it's not enough renal failure for dialysis, but still enough for it to be a serious problem and consideration.  Me: what else is new?  I'm losing body parts right and left, why should this be different?  But I suppose that when I see my GP, I'll need to have a talk with him about this new "discovery," along with all the other surprises we've discovered since I last saw him about six weeks ago.

And that's my progress report.  It feels rather self-indulgent going into all this detail.  On the other hand, my head is spinning with all of this news.  I need to figure out what everything means.  I STILL forget to take my thyroid medication until I start experiencing various symptoms returning.  My body is always surprising me: one day it can be my peripheral neuropathy that reminds me that I forgot to take my medication that morning, the next day it may be when my voice starts to go very hoarse and I sound as if I'm croaking.  Perhaps I should start a New Year's Resolution list now and put taking my thyroid medication on time each morning as number one on the list.   On the other hand, what about all the other number ones that need to be on the list?  

Man oh man.  How many more surprises can my body bear, I have to wonder?

I did, however, do my civic duty and voted: that was absolutely fun since I ended up talking for a little while to my old/former neighbor's sister, who's 91 years old.  In the midst of our conversation, I mentioned how often I remember her mom and the conversations we would have across our mutual fence.  The daughter was obviously touched and said "Mother" would have loved to know that I remembered her so often, and most especially our mutual love for gardening.  How I still miss those neighbors!  And how I love our little-town feel, especially on election day when you run into neighbors you -Ok, *I* - don't see very often any longer, due to the DD.

And to top it all off, hubby and I did indeed get to TJ Maxx and managed to fill up two and a half carts of things needed for the house as we will try to get the house into shape for the holiday season - IF we can get it looking like we're not in the middle of the remodeling and redecorating phase which, actually, we definitely ARE in.  (I KNEW we should have simply moved!)

So, all in all, it was a very up and down day.  I know that the next week is going to be payback for all the socializing and feeling "human" that I did today, but it will have been worth it.  Every once in a while you have to turn off that computer in your head that factors in every step you take and gauges it as to how much of a price will be paid.   Of course, with my recent luck, I just hope that I don't end up paying for that sort of thinking by losing yet another body part - I'm really attached to the remaining ones I still have, knock on wood!  (JOKE, I hope!?)

As always, I hope everyone is feeling their very best, only better. Ciao and paka!

Betrayed!

One of the best days of my life was reviewing my SPECT brain scan and seeing tangible evidence of all the damage in my left brain.

I'm not a conspiracy theorist, but if one looks at the story of CFIDS and/or fibromyalgia, one can't help thinking, "we" who are afflicted with CFIDS/ME/CFS and/or fibromyalgia were "doomed," for whatever reasons, right from the start.

It seems that NOTHING has gone right in the past almost 40 years.  Excuse me for repeating myself just a tiny bit from what I wrote in my "P*ssed Off" post, but to put us all on the same page, here are just two points I made: the few funds we fought so hard for from the NIH, were misappropriated by other agencies and really, no one cried "foul," much less was anyone taken to court for criminal activity.  When the doctors at Incline Village, Nevada could finally talk the CDC into sending a "team" to investigate the outbreak of this new disease - in a cluster - the "team" had the gall to spend its time skiing and sampling the restaurants instead, with the "team" arriving in Atlanta and declaring there was no outbreak in Incline Village.  And so it went....

It's now decades later and a third generation is becoming ill with this truly monstrous,  hideously cruel, though highly invisible, disease.  And what's happening?

Well, what's always happened, but for a few glorious years in the late '80's and '90's, is that we are being thrown back into the psychiatric wastebasket.  What???  It's the 21st century and we’re doing what?  Going back to 1970's standards?

• A couple of points first:  There are markers that can be found that prove CFIDS/ME/CFS and fibro exist.  The elevated protein in my spinal fluid is just one example, and it was seen in 1984 and 1988!  Yet are these biomarkers being used in anything that can help the CFIDS, etc, patient?   Not much.  Ampligen, around since the 1970's is still trying to get off the ground and avoid bankruptcy.  Funny, Viagra never had this problem.  Heck, Viagra was the first drug (or thereabouts) to be fast-tracked.  Those congressmen and senators wanted their...well,  you know what THEY wanted!  And they GOT it, as I'm sure everyone's aware, given all of us have gotten a spam or two trying to sell us the product, for male OR female, since we started exploring with the most primitive of computers and the Internet.
• Furthermore, just as another example - albeit a very stunning and almost unbelievable example - until the 1960's, rheumatoid arthritis, a disease NO ONE today would dispute as being a terrible physical affliction, was thought to have its origins in mental illness.  And yet man was almost to the moon when this disease was still marginalized and worse.  The term, "Rheumatoid personality" was used quite extensively until blood tests like Rheumatoid factor became commonplace.  Mental institutions a hundred years ago were filled with patients who had such physical problems as lupus and thyroid disease, to name a few.  It wasn't until objective blood testing revealed the true cause of the patients' problems and effective treatment could be sought after and implemented that the psychological wastebasket treatment was thrown out.  See a parallel with the mess we're dealing with here???

This sort of thinking is not just insulting but it's downright dangerous as well. There are consequences that will and are being paid because of this lackadaisical attitude.  Some entity, a government, a bunch of people, some sort of institute doesn't like a certain illness, well, then just throw it into a psychological wastebasket.  I think Hitler had that problem to some degree, no?   But it gets worse.  Here are some bullet points for you!

• Throwing CFIDS into the psychological/psychiatric category causes people not to be inspired to look for the real causes or co-morbidities.  The proof is in the pudding, folks.  We're no further now in 2012 than we were back in the 1970's, really, or for all practical purposes.
• Betrayal by the American College of Rheumatology.   Now there really needs to be no touching of the patient: overlap of CFIDS & fibro, both diagnosed clinically, that have, for all practical purposes, no lab test or x-ray that leads to diagnosis are in for a lot of trouble.  Oh, some tests are available, but the testing is incredibly difficult to obtain and no insurance company is going to OK the costs.  The scarier part, to me at least, is that the American College of Rheumatology (once a great champion of fibro and CFIDS) proposed a new set of fibro criteria in 2010 which was based on the patient's history, a questionnaire which would yield a Widespread Pain Index (WPI) and a Symptom Severity Scale Score.  If the WPI reveals pain in at least a certain number of body parts and the symptoms of fatigue, cognitive problems and unrefreshing sleep are sufficiently severe then one is labeled as having fibro.  Imagine this, in contrast to the 1990 fibro criteria, where a minimum number of tender points had to be present.  Now the doctor doesn't need to touch you at all!  Furthermore, the dolorimeter, an easy, practical, HARMLESS and inexpensive test, which was used to measure pain threshold is basically gone, as is the Brain SPECT scan, which shows abnormal blood flow in the brains of fibro and CFIDS sufferers.  Yet the"useless," "harmful" and money-making (money-wasting) tilt table test is still out there, almost a relic of the Spanish Inquisition, and  persists. (Getting rid of the tilt table test is like trying to kill off Rasputin!)
• With no touching of the patient, only a questionnaire, how accurate are the criteria?  They become completely subjective and hardly objective at all.  This only gives ammunition to those who say that CFIDS and fibro are not real illnesses or that they are psychological.

Along with no - or only a cursury - physical examination, other potentially serious illnesses would likely be missed (as is already happening, me being Speciman A!):

• The sad thing is that medicine in general is become more and more depersonalized with an over-reliance on testing, and a minimum of physical contact between the doctor and patient.  When the doctor would check for fibro tender points, he would often find evidence of such co-morbidities as myofascial pain syndrome, arthritis, thyroid disease, growth hormone deficiency, to name a few.  It seems as if the newer criteria are for the convenience of the doctor, not for the benefit of the patient.  It's bad enough that fibro and CFIDS patients are labeled as being depressed or suffer from anxiety, but if this trend continues, even those docs whose hearts are in the right place will rely more and more on questionnaires and less and less on physical findings.
• This psychological wastebasket is also dangerous since once patients are labeled as mentally ill, all symptoms are viewed through that prism and physical pathology all too often goes undiscovered. It is important to note that fibro and CFIDS patients score very differently on standardized pyscholological tests than do patients with depression.  For example, the depressed patient will not attempt a task or activity, underestimating his ability to perform it, whereas the patient with CFIDS or fibro truly believes that he can accomplish a given task only to collapse when the flare of the disease knocks him down or out.  Yet that very patient believes that in the future he can attempt the task and succeed.  No two types of patients could be more different, yet the medical establishment stresses the psychological and downplays the physical.  When a rheumatologist is asked to use a questionnaire instead of a physical exam to diagnose a physical ailment, something is very wrong - after all, don't psychiatrists behave this way, never touching the patient?
• Why is it that medications such as anti-inflammatories, anlagysics, and quinine are taken off the market for problems which cause side effects in relatively rare instances?  However, medications such as Lyrica and Lunesta, which are still on the market and are so dangerous that they are required to disclose mind-blowing side-effects on their TV commercials - which not only include suicidal ideation, but suicidal actions - are still being sold like pancakes at Octoberfest?  Why is it that we are so "persecuted," since I cannot think of another word to use?

As I wrote in an earlier post, Stalin, in his great sanity (not!) decided to punish the "rich," "peasant" class, the most productive class in Russia and the Ukraine, called them "kulaks" and took all their land, food and shelter away from them, then shipping them to Siberia in cattle cars.  This occurred in the famine he induced, on purpose, in order to kill at least 10 million Ukrainians in just one winter, 1932-33.  These two countries, Russia and the Ukraine, are still feeling the repercussions of having lost so much talent, 80 years ago.

Somehow I feel as if this country - plus a few others; we are not alone in this criminal behavior - in the land of the free and the brave, is treating each of us as "kulaks" also, again.  The vast majority of us with CFIDS/ME/CFS and fibromyalgia were all highly productive citizens at one time, contributing to taxes, the economy, the work force, but many are now trying to get by on meager government funding, which is barely enough to stay alive. Think of how much good to society we are wasting when we allow such a highly-motivated and skilled population to rot away. Yep, we're like the kulaks. The only difference is that we're just dying at a somewhat slower pace.

We paid our taxes, we trusted our government, as well as the medical system, and we've been betrayed in the worst possible way.

What can be done about our situations?  I'm not really sure, but here are just a few thoughts:

•  I know that celebrities have often changed the course of illnesses or causes.  AIDS' "perfect storm" was when Rock Hudson, the beloved movie star, contracted AIDS.  The country softened its views about AIDS.  To further away the stigma, then Elizabeth Taylor, Princess Diana (under great criticism), Elton John and young Ryan White, who was helped by Elton John, were able to stir the conscience of this country's attitude toward AIDS and funding - and to make it not feared like leprosy - an analogy which I've always found to be repulsive since why should leprosy be stigmatized?  Actually, it took a lot more pieces for that "perfect storm," but these were the ones that put AIDS on the map and made it no longer the fatal disease it was in its first years, if medication is taken properly.  Yes, it's expensive, but then so too is my Human Growth Hormone alone, not to mention the 25 plus meds that I'm on, give or take a few, depending on which year it happens to be.
• Mothers Against Drunk Driving (MADD) worked because Candice Lightner, the mother of a girl tragically killed by a drunk driver, knocked on every congressman and senator's door, repeatedly, befriending staff with coffee and donuts until she found someone who might be able to help.  It was a tough job but look what it led to!  (And yes, there are political problems, but again, look at the results!)
• Breast Cancer awareness began at a grassroots level.  Parkinson's entered the mainstream with Michael J. Fox, and his dogged determination.
• Autism became big when upper-class parents united.

But CFIDS and fibro?  We need to find our celebrities, our dogged pursuers, the ganging together by healthy people who are on our side and start a huge funding project for our cause.  How this will happen when the American College of Rheumatology has given up on us as well, I'm not sure.  I know it's not going to happen for a while.  But happen it must.

Our country can't afford to keep losing its greatest resources, its best and its brightest.

As always, I hope everyone is feeling their best, only better.  Ciao and paka!


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