Friday Tidbits: A "Mini-Flare"

I'm strongly considering changing the name of my blog since I find myself  "complaining" too much and not giving you enough laughs.  Really and truly, too often I feel that perhaps someone should report me to a blogging review board of some sort in order to turn me in for false advertising - or being guilty of a good old-fashioned "bait and switch."  

Yet be that as it may, I'm gonna do a bit of complainin' today.  However, I don't mean to put people in a cruddy mood.  Oh no, no, no!  Instead I hope that those reading this post will feel "lighter" about things when they hear that they're not alone out there.  You know.  It's the "misery loves company" cliché put to work.  

Last week I wrote about my orthostatic intolerance (OI) and POTS (postural orthostatic tachycardia syndrome, also known as postural tachycardia syndrome).  One reader tweeted me saying that she felt that this was the worst part of her fibromyalgia and I think that really, the OI/POTS mess is, indeed, one of the worst symptoms for me as well. 

This "mini-flare" I'm experiencing with the OI and POTS seems to be cyclical, brought on by stress.  I talked with my rheumy about this and he says that he sees this frequently in his practice. When it strikes, it's a monster. I mean I always have OI going on and have coping strategies, honed over the decades.  I remember that in my early years of being sick - before practically anyone had even heard of CFS/fibro - I used to say that I hate standing in line, to which hubs would joke, "who likes standing in line"?  

It took years to figure out that I didn't actually "hate" standing in line so much as I simply couldn't do it.  It was extremely taxing on my body as my changes in BP show: one set of numbers while lying down, dropping significantly when I sit and then dropping into almost dangerous numbers when standing up.  The heart rate changing significantly as well. Unfortunately, it took "forever" to realize this - after I'd fallen in all the best cities in the States and Europe, as hubs puts it.  Some people bring back souvenirs from their vacations; I bring back yet more stories of falls, including one at this link. 

I must say, I'm a bit frustrated.  I want to write about all the problems this OI and POTS has caused this week but I'm just too weak to get into it - and really, who cares?  But today when I finally bullied myself to get to the computer -  after all, I promised ages ago that come Friday, you'll "always" find a post here - I encountered a few problems.  It was hard to keep myself from gliding off the chair.  It was difficult to read - even a pitocin shot was finding it hard to coordinate my brain with my eyes.  I'm working through a haze on this post - you poor, poor reader.  Worse, I found it difficult to think straight, my brain is so overwhelmed by indescribable fatigue.  I also find that I'll stare at something, frozen for moments - another classic and annoying problem with CFS/FM.

I thought to grab hubs as he was about to run out the door and ask him to check my BP. It was a "strong" 84/50 while sitting at the computer.  (For newbies: that's not a good number!)  Why bother taking my BP? Because I always find it easier to deal with something when I know that it's not me being lazy.  There is comfort in knowing that I'm simply unable to walk around.  We didn't even bother to take my BP standing: too dangerous.

Back to what causes a body that already has OI and POTS to get ridiculously awful?  I mean I do have coping mechanisms for my regular OI and POTS.  Why this "mini-flare"?  

My rheumy said that no one really knows why but it can most definitely be associated with stress.  He used the term, "when your body is under siege," and said that just overdoing can trigger the OI and POTS.  With me, it happened very badly after getting my driver's license renewed back in April, which eventually contributed to my need of a lengthy hospitalization. This current flare was probably due to the dentist appointment last week. (And I need HOW many more appointments!  Just shoot me now!)

It's a funny thing too.  It can change moment to moment.  I can pop out of bed to retrieve something I need and no problem. Next time I want to retrieve something, as soon as I'm out of bed I lunge for the nearest surface because I'm suddenly drenched in sweat, about to hit the floor, heaving to get my breath, unable to breathe correctly for a pretty lengthy period of time.  

One night this past week I wanted to go downstairs to just get a peak at the decluttering project hubs has going (more on that in another post) and was fine going downstairs. When I turned around to go up the stairs, however, whatever bit of adrenaline I'd mustered up in order to see the "project" ran out and I had to crawl up the stairs.  After 10 minutes - in bed - of grasping for air, sweating like a penguin in Florida (I do think that penguins sweat under the right circumstances, no?) I thought to wake up hubs.  Can I say that the man can sleep through anything, including my melodramatic moments?  I don't remember what my BP was but it was so bad that he wouldn't go back to sleep for about an hour, monitoring me. 

So, this is where I am at the moment.  I'm not sure how much writing I can do while I'm in this "mini-flare." It's a bit much at the moment: trying to get the hypothyroidism under control and coping with what I hope is the last stage of detoxing the Cymbalta.  And really, these are tip-of-the-iceberg symptoms.  Ah, yes: never a dull moment!

And so as always, I hope everyone is doing their very best - only better!  Stay safe - and hydrated - with this monstrous heatwave we're having.  Ciao and paka! 



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Orthostatic Intolerance and POTS

Smile!

The other day my orthostatic intolerance and POTS reared its ugly head again - not so unusual - but at a most inconvenient time.  I had a dental appointment for a good cleaning and then another meet with the dentist, to go over the plan of what we'll do over the rest of the time we have left.  As I've written before, my dentist and I have agreed that no work should be done once flu season starts because I always end up getting sick from a visit - and when I get sick, I really do it right!  One year, after a tooth extraction (with an oral surgeon) I caught a bug that lasted two years.  At the end of this awful period I was left with blotchy legs, all purplish and red.  Anyway, there are just too many germs involved with waiting rooms, etc.

I've been going to the same dentist for the past 25 years and he's seen how sick I can get.  I hate that I end up canceling appointments right and left so we've decided that any work I need has to be done between April and September - minus an emergency of course. *Meekly looks up from under her bed covers*  Ugh...I started a bit late this year!  

And I do so love my dentist.  He never lectures me about anything and just says "Do the best you can and don't worry about it," or some such, with a comforting hand on a shoulder.  Whenever I get this "treatment" of kindness and encouragement, I want to cry because kindness always brings me to tears - much more so than any sort of meanness and callousness does. Oh boy. Am I off track or what?

Getting back to the POTS and orthostatic intolerance, two weeks ago I wrote about my abbreviated makeup job in going to the dentist.  I thought that was a hard getting-ready-to-go day.  And mind you...this is a really important thing for later in this post.  Getting out the door is the hardest part of my going anywhere.  Once I've taken a bath and washed my hair, dried my hair, put my clothes on .... Whoops!  A mistake: need to backtrack and undress because I forgot to put on deodorant.  Need for it to dry, to wait and then put on a second deodorant because I perspire just that easily.  Yes, so put clothes back on, see what shoes or boots will fit me that day. I'm entirely too exhausted to do much more to my face than apply some sort of serum, finding it too hard to even think of putting on an SPF, a BB cream or my CC cream.  

And so, as I got out of the tub my body thought it would remind me that it wants/needs to stay in bed and not go anywhere whatsoever, for whatever reason.  Hubs and I thought differently, fools that we are.

I started collapsing, I couldn't sit up in order to breathe, I couldn't breathe because I had no energy to do so. I've only had one major panic attack (that I remember) and it was a doozy, causing me to end up with bronchitis which turned into a pneumonia that was so near-fatal that I got a pneumonia vaccine - a big step in "those" days. This was worse than that panic attack and frankly it scared me. Yes, I'd noticed in fleeting that I was getting awfully light-headed too often in the three or four days before this happened but I didn't need to be anywhere so it wasn't too much of a concern.  There were enough squeaky wheels (symptoms, disorders) to address and the blacking out bit was just a minor inconvenience.  

Hubs, who was getting very upset with what was going on, was trying to be as encouraging as he could be but now I was in the cruddiest of moods.  First I felt "he's in my way, under my feet every time I turn around," yet moments later I was exasperated, thinking, "where the heck is that man?"

"That man" was pumping really cold water into me, gave me OJ, all hoping it would work.  I was collapsed on a chair, bent down and slinking off, which reminded me of my daughter's graduation from university.  I kept sliding off my chair as the new graduates were making their way to the stage, being plucked right back up again by hubs, my mom completely and totally oblivious to everything going on around her but that her beloved granddaughter was about to receive her diploma.  That her daughter was having a side show of her own, slipping and sliding away, she didn't see!  (I hate to think how many people must have thought I'd had too much to drink!)  And once I starting passing out on top of the slip and sliding away, there were medical people around to help carry me out.  But that's another story, as in "Why I didn't see my daughter graduate even though I was there?"

Back to the dentist day.  As I was (so melodramatically) finding it hard to breathe, move, think and other (superficial) activities, I thought to ask hubs to take my BP.

Like many of you out there with CFIDS/CFS/ME and/or fibromyalgia know, our BP can be very low for all too many reasons.  I usually concentrate on the top number without giving much thought to the bottom one but I was now concentrating on the bottom.   It was 80/50 sitting down.  When I said that I wanted to have my BP taken standing up, he tried to put his foot down and said it was just too dangerous at that moment to do anything but sit there for a while and let the liquids do their job and to get a bit to eat to stabilize my BP.  He was right. (Moan! Groan!) 

It was a tricky little period.  The getting-ready-to-get-out-the door is always the hardest part for me.  Once outside, my adrenaline can kick in and I can go into emergency mode, but there is always a huge price to be paid in the end.  And it doesn't seem to matter if I've been out for 8 hours or 2 hours.  Weird!

When the dentist said that the next phase of fixing my teeth would take a bit of work he was concerned. Finally, he magnanimously proposed that we split that job into two days, two appointments for 90 minutes each.  Goofy me said, "fine!"  I always think it's fine UNTIL I have to do it and I realize that I am indeed a sick person.  Why is it that I have such a hard time getting around that little "fact"?

Hubs spoke up and explained that after my one and a half hour appointment, I'll be so ill that I won't be able to come back another day anytime soon.  After much discussion, we decided that it would be a better tactic to go just the once for three hours vs. the two appointments for 90 minutes each.

What would have been your decision?  And do you find that getting out the door is the hardest part of anything you do?

Anyway, I hope everyone's doing their very best, only better!  Ciao and paka.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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"First Do No Harm"

Believe me: no one's laughing or smiling during this test!

Today's topic is one I've gone on and on about with fellow CFIDS/ME/CFS and fibromyalgia friends, as well as some pretty great doctors, for ages: lack of commonsense, waste of money and gimmicks in one area that I simply cannot see the justice in, namely the "tilt table test," in order to detect orthostatic intolerance or Postural Orthostatic Tachycardia Syndrome (POTS).  To tell you the truth, this post was written a few months ago but I hesitated to publish it because I felt I needed to tone it down a bit.  Wrong: I should know by now that one of my character flaws is that I don't feel better about things until I get them out.  Until then, I just get angrier about what I see as an injustice or even worse - worse than injustice, that is, not my behavior.

I can't even remember how often I've read on blogs - or before blogs were even imagined, on forums back in the '90's - that someone with CFIDS/ME/CFS and/or fibro has had to go and have the (now to me "infamous") tilt table test.  This is total insanity.  The ME patient gets sick from this test.  And believe me, I know.  As the T-shirt says, "been there, done that!"  Twice!

Whenever I read about another person who is subjected to the "tilt table" test and happens to mention that they got worse after it, I want to scream out "STOP IT, YOU IDIOT DOCTOR!" and that's just the tip of what I REALLY want to say. Fainting is only one problem that can occur during the test. The heart stopping is yet another problem.  When I saw a cardiologist a few years ago, HE almost passed out when he heard that I'd undergone the tilt table test, shaking his head at the insanity.

Over the years, I've done a bit (!) of research and interviewing about this subject because my first experience made me so sick.  Why did we do it?   Well, because it was "the thing" back then in the late '80's and early '90's.  But might I add that back then the advice/command and conventional wisdom was also, "no pain, no gain," and steroids to be taken every day, along with dozens of other "hard and fast" rules and beliefs which now sound goofy, if not crazy?

I didn't blame my doctors back then and looking back, don't now either.  We were in the "Stone Age" when it came to understanding CFIDS/ME and fibro.  No one knew what was going on and the advice, though very wrong and which ended up so often making me sicker, often with irreparable harm, was not malicious.  Nor were my doctors hesitant to reverse or modify what wasn't working, that which went against common sense when they saw a "failure."

But the tilt table test, in its time, made me horribly worse for much longer than I ever could have imagined.  Even back then I fumed.  In fact with this one thing, of so many other things, I fumed so much that I just couldn't let it go for some reason.  It was that little voice in your head that nags at you, telling you that something is wrong here.  My analogy is that it's computing in your head but the information won't come out because there's a paper jam.  Finally, the paper jam is resolved and eureka!  The paper spits out the info and you have the revelation.  OK. This may not the best of analogies, especially given how little I know about computers.  After all, I don't even know how to print anything out!  Sadly true!

But getting back to the tilt table test.  Shame on me for going through it again with a top ME specialist (eye-roll is the least of the facial expressions you can't see at this moment) within the last 5 years. I was so much sicker the second time around - it was the very reason I went to this doctor in the first place.  We were very, very, very desperate, wanting, indeed needing, yet another top doctor's advice.  It was a nightmare for many reasons, but the tilt table test is the bit that just sticks to me and I CAN'T let it go, especially since I KNEW BETTER.  I didn't listen to my instincts.

The good news?  There is an easy way to establish orthostaic intolerance.  Easy, cheap, fast and with no relapses, no making the illness MUCH worse as it was in my case.  After the second test, I actually had to be hospitalized.

The easy solution - and I hate to use the word "easy" because it sounds too good to be true.  However, I've spoken to quite a few sources about this over the years, pioneers in their fields, ones I respect a lot.  Each one has said the following, to use a very old-fashioned practice:

You lie down on the exam table and your blood pressure is taken.  You then come up to a sitting position and your BP is taken again.  Finally, you stand up and the BP is taken once more.

In my case, my BP is basically 90/70 lying down, 80/65 or 80/60 sitting and 70/55 or 70/50 standing.  The huge shifts are the orthostatic intolerance.

BUT: It doesn't even really matter what the numbers are, as long as there is a large progression in the decrease of your BP numbers from lying down, to sitting up, to standing up.  For example, if I'm in enough pain and not dealing with it well, my BP will go up to 130/whatever and a few times much, much higher.  But sitting up, it'll go down, and standing up, it'll go down even further.  With some CFIDS/ME and fibromyalgia patients, it takes a little longer between the sitting up and the standing up for the changes to be noticed.  I happen to be one who needs no time at all, going kapooie at once.  It's no fun, I agree.  But this is so much easier on the body than being strapped into the machine and made to stand in/against it in the dark while the doctor annoyingly whispers gossip with his nurse for an hour.  If nothing else, how rude!

The only question that remains in my head?  Are those doctors still using the tilt table test just plain idiots, trying to run a procedure to make more money or simply trying to pay off and justify the purchase of an idiotic product?

And let me make this perfectly clear: normally, I have a bit of a problem when people complain about doctors making money, because doctors are trying to make a living, just like anyone else.  They have a lot they're fighting and those who still elect to treat us, the "train wrecks" of medicine, should on the whole be commended.  We're not easy patients, to put it mildly.  These doctors also have had extensive schooling and training.  I get that.

However, when I see something that is being done that belongs back in the "Stone Age" in regards to ME, and we're now in what I like to refer to as the "Middle Ages" in ME, that is, we still have so far to go, I do get very, very upset, and I think justifiable so.

Yes, this is a rant.  But it is a justified one which has been researched, and which I've, unfortunately, had experience with.  I would like to see this horrible injustice stopped for good in the case of ME.  I don't know about the effectiveness or ineffectiveness of the test in other illnesses - I'm the first to admit this, though I don't see how it would make a difference - but I know that in this case, all too well, the problems that do result.  Doctors who treat us must remember that most important part of the Hippocratic Oath: physician, do no harm.

Orthostatic intolerance is a huge problem, but why add to the problem by using a machine that induces further complications when there is a tried-and-true method that costs nothing and does not cause a patient to get even sicker than before?

Rant over.  I must admit, my heart is beating at an unhealthy rate here, knowing that I am not politely carrying out politically-correct messages, going against a lot of people out there who've never had it yelled out to them that they're not wearing clothes, as in the proverbial tale we all learned as children about a certain emperor.  But so it goes. What's going to happen to me?  Will someone take away my status as a "professional CFIDS'er"?  Please: that's one title I'd love to be rid of!  In the meanwhile I'll lose some sleep: like that's anything new?  So, why the rushing heart beat?  Because I don't like confrontation?  At my age, it may well be time to get over that too.

At any rate, as always, I hope you're feeling your very best, 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.

Salt...The Rest of the Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

About Fibro Brain...

Our first batch of hyacinths is making an appearance! 

Since we've had no winter this year, it seems that the beautiful bulbs my hubby and I planted will start coming up soon.  I've noticed others post lovely pictures of their flowers on their Facebook wall/albums, or on their blogs.  I thought I should give it a try because....

Well, first, let me back up here for a moment for the backstory.

I had ordered bulbs back in June/July for fall planting.  By ordering before a certain date you receive a huge discount (50%!) and I'm always up for that. My last massive planting was back in 1996, quite some time ago, I'd say.  Those bulbs lasted quite a while, though granted, each year we had fewer and fewer flowers coming up in the spring.  

Understand, our house needs some serious curb appeal since a contractor who took down our falling-apart front porch failed to ask me if I wanted to save any of some pretty wonderful landscaping I had. Oh, we needed some serious overhauling, and every one of the bushes was meant to be moved, but away, not forever.  I especially miss my white oak leaf hydrangeas which I'd planted as little more than twigs, well over fifteen years ago. Again I digress, but you get the idea. 

This year we had to do extensive remodeling (thankfully by another contractor) and since the work was and is still on-going, I thought bulbs would at least cheer up the front of the house - not to mention that they would delight our poor neighbors, I'm sure.

When I ordered the bulbs, however, I didn't take into account that my "gardening son," my "assistant," may very well be out of the country come bulb-planting season.  The bulbs were delivered to our doorstep by UPS in mid-September, but I put off planting them seemingly forever - thanks to the DD (code word for "Dreaded Disease," etc., if you recall).  But one day I bit the bullet, took up my gardening equipment which hubby had kindly put aside for me in a convenient spot, grabbed the bulbs and made my way to the front porch.  I wasn't exactly bouncing along, but at least I was up.  On the new porch, protected from the sun, I proceeded to line up the bulbs by color, type, height, growing time, color combinations.  It was truly a magnificent sight, all that coordination and organizing.  I was quite pleased with myself, I must admit.  I even took out a sketching pad and pencil and marked the places I'd put groups into and how many for each group, which would be in the front, which in circles, which scattered and naturalized - again, you get the picture.

That day, after about fifty bulbs, all my plans went kapooy!  Hubby came along and I snapped at him that I knew exactly what I was doing, thank you very much.  I noticed him grabbing a glimpse of me every thirty minutes or so, sure I was going to pass out before too long, or worse, fall and hurt myself and need a run to the ER for an X-ray....it's happened more than a few times before.  By nightfall, despite the many cold glasses of water I gulped down (to keep my blood pressure up), I was running out of steam and welcomed hubby's carefully worded offer to help clean up.  He looked at the bulbs still to planted and then at me and asked, "HOW many bulbs did you order?" Very matter-of-factly I answered, "oh, about a hundred and fifty."  Good thing I couldn't seen the eye roll because of the dark, otherwise, the MAN might've needed the ER.  (OK, I'm kidding about him and possibly needing an ER...somewhat!)

Well, the expected happened.  I paid for all my efforts the next day and the next and the next....  Can we all say, "post-exertional fatigue!", one of the hallmarks of this DD?  I could manage the pain this time, but the fatigue was now the real killer.  Hubby kept asking if he could help.  Through gritted teeth I kept informing him that I'd get out there and do it myself, thank you very much.

To make a long story short, a few weeks later hubby ended up planting the rest of the bulbs himself.  He planted another hundred and didn't make a dent.  Each day he'd rush home from work to plant as many as he could before the sun went down.  For the first time in my life, winter hours were my enemy and I wanted Daylight Savings Time with its extra hour of light - a definite sign of my desperation.  We kept trying to figure out new areas to plant the bulbs because the darned bulbs seemed to be mysteriously mutating and procreating.  Hubby started to use flashlights strategically placed around himself and any particular flowerbed he was working on.  We got to the point where it didn't even matter WHERE those bulbs would go.  We just wanted those suckers in the ground!  Eventually we tallied up each bag and how many were in each one.  It turned out that there were over five hundred bulbs, all for a lot not much bigger than a postage stamp.

The moral of the story: CFIDers and those with Fibro can't count nor should they be believed that they can overcome all obstacles.  We may think we can, even truly believe so, but nothing is further from the truth...we are all too often in serious denial, thinking we can do what we did before we became ill.

People, please take note.  I'll be discussing this further once I can get my wording correct, but there's a point I'd like to bring up at this point.

There IS a difference between depression and fibromyalgia, with depression on the one hand and CFIDS and Fibro on the other, contrary to what all too many doctors, as well as crazy psychiatrists and psychologists, seem to believe.  With depression people feel as if they can't do anything, they can't even begin anything, all because of the feelings of desperation, uselessness, and being overwhelmed. With CFIDS/CFS/ME and Fibro, on the other hand, we  all too often think we can do, as I said before, whatever we could do before we became ill.  When we can't do something despite every effort, we get angry, we cry, and/or become upset, a normal reaction. 

Now that's a HUGE difference, one to explore for another time.

In the meanwhile, I can't wait to see what kind of mishmash comes up this year in our garden.  Should be interesting!