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.

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

"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!

Beauty falls: why I just HATE standing in line...

About the time of the fall...

This has now become, with the passage of time, such an un-PC moment, that my hubby and I still laugh about it.  Heck, we still laugh about it because it was also just so plain funny.


Back in the early '90's, hubby had the opportunity to speak at a conference in London.  Given that my most favorite city in the entire world is London, I wanted to do all I could to ensure that I'd be able to go with him. We'd basically never before traveled anywhere without our children, but for London, I was quite willing to parcel them out to various friends for about ten days. (And yes, they had to be GREAT friends to take on any one of my wild bunch!)


The tricky part, of course, was for me to stay well enough to travel, to actually look good enough to travel (many years later Qantas tried to refuse me entrance on the Sydney to Townsville part of my journey because I looked THAT bad), and to keep my body out of the hospital.  Easy task for some, but not for me. In addition to that, I had to keep myself well enough to fly on my own.  The "house rules" were that I wouldn't fly on the same plane as hubby since I've always had a completely irrational fear of planes.  My thinking was that in the unlikely event that a plane went down, the kids would have at least one parent left. Of course, the rules changed if the entire family flew: then we'd all travel together.  I felt that should the worst happen then, we could simply all go down as a family unit and, hopefully, have a jolly reunion on the other side.


Evidently, patient hubby and I had a wonderful ten days in London.  Because it really was a hardship (understatement?) on my mind and body, I don't actually remember anything at all of the trip but one thing...


We were starved and I'm extremely indecisive about what I want to eat if I get too hungry.  (More on that some other day.)  Loving hubby sighed, knowing what was coming and we finally agreed we'd eat in the hotel's little cafe.  We arrived at said cafe and stood at the entrance talking about this and that while waiting to be seated. Finally, very verbal hubby glanced in my direction - and realized that he'd been speaking to himself because I had disappeared without even a polite warning.


Surprised, he looked around, thinking I'd run off to the ladies' room and then happened to glance down, and there I was, crumpled at his feet.  I'd rudely passed out without a word of warning.  As hubby tried to get me to my feet, the maitre d' came running up to us, absolutely shaken up (I suppose they don't normally have patrons passing out on a regular basis!) apologizing profusely that he'd made us wait for him for so long - even though it hadn't been long at all - and directed us to the nearest table.  


In the meanwhile, I really, really wanted a cigarette - actually, I needed a cigarette.  I had suddenly started smoking just months ago, for three months actually, and then quit abruptly because it was all just so messy. However, when my doctor finally realized that the reason why my pain medication intake had gone down so significantly in the three months I'd stopped smoking (though we were all at a lose as to WHY I was suddenly able to take so much less medication) only to suddenly rise back to its normal amount again after I quit, he thought long and hard about which was the lesser of the two "rotten situations to be in" and decided that I should go back to smoking. In fact, he actually said that he never ever thought he'd encourage a patient to smoke, and very likely never again would need to give such advice, but I was a pretty desperate case. I really hated going back to that mess but was happy to have some pain alleviated, so back to smoking I went. I also worried about the example I was setting for my children.  But the kids were old enough that they understood mom's need for smoking so that became a non-issue.  They looked upon my smoking as a medication and not a vice and humored me when I would tell them to please leave the room if I were smoking, even as I kept air filters going on in my bedroom 24/7.  Of course, the funniest part is that I am allergic to the smell of smoke and there is only one brand of cigarettes that I can actually tolerate before IBS starts in - be it me smoking or anyone else.  Such a prima donna!


So, before the maitre d' could seat us, I said, "but is this the smoking section?"  The British are always so exquisitely polite that I really didn't want to put anyone out.  This was also at a time when Europe still looked at us Americans like crazy people because we were so uptight about the whole smoking issue.  A very distinguished professor even said to me, when I asked if he minded if I had a cigarette, that we Americans were so determined in setting the world's value system.  Couldn't argue with that - especially with such a wonderful Oxford accent!  

The maitre d', with the sweep of his hand, gracefully shifted his body to another table and swooped up the ashtray from that table, placed it on ours and answered my question as to whether or not we were in the smoking section by saying, "it is NOW!"  


That fall makes my list of my top five best/favorite falls of all time.


(Note: I'm no longer smoking!  But I still think this was a hysterical incident. It was a different time re smoking.)