Friday Tidbits: What Is My BP Trying To Tell ME?

Sometimes moms are guilty as well when it comes to listening.  This was no happy camper! 

Yesterday I finally made it to my GI appointment and I'm on Cloud 9.  You may not think going to see a doctor is remarkable but consider this: since 2009 I've made many appointments which I've had to cancel at the last minute, all because I was too ill from my CFIDS/ME/CFS and fibromyalgia. This is the first time I've been able to see my GI in his actual office. (Baby steps!)

So, hallelujah!  It was almost a miracle that I got there.  I won't even mention the melt-down I had as I was getting ready.  Nor the shaking on the outside, shivering on the inside. That I fell a few times. That I dropped many things - because of the shakes.  Or that I ended up with cuts in various places because of the shaking, shivering and weakness. That I couldn't stop the sweat rolling off my head and other parts. That getting dressed was more of an ordeal than the usual: my arm has a rotator cuff injury so I can't do simple things like put on a bra. Hubs was having such a hard time getting me hooked in that I finally yelled (yes, I admit I yelled): "you must be the only male in the world who can't get a bra on a woman."  Hmmm.  Maybe that only applies to getting off a bra and not getting one closed.  I may have to rethink that remark! ;)

Continuing: I couldn't control putting on my eyeliner.  My vision, which is so iffy, was so bad that I had trouble connecting the eyeliner with the place it's supposed to go. (The vision problem is that the eyes aren't getting the right signals from my brain, the pitocin problem.) 

My skin has many problems such as rashes and hives but almost never zits?  Well, when I got home I found quite a few zits.  My rheumy tells me that it's because of the stress of getting ready for the outside world, just overdoing it, which produced those ugly suckers.  But you don't want to know all those gory details as I pushed and pushed myself to try to get out the door.  Right?  So I'll spare you. (That's me being tongue-in-cheek, folks! I just told you most of it, I know.)

So, getting back to the appointment.  It was good but it could have been better. Don't get me wrong, I really like my GI.  However, I don't think that 15-20 minutes (tops) is enough to discuss what I've got going on with me, my very complicated and long-term problems.  And it's further frustrating because this doctor, who's been in practice for over 30 years, repeated for the nth time that he'd never seen such a bad case of impaction, occupying my entire colon which we fought during that 10-day hospitalization in late October.  The impaction he could spend a few minutes on but not address some of my concerns and observations which I feel are needed in order to get to the root of the GI aspects of my health.  We're over the impaction and need to move on.  Yes, it's great to have validation that I was in a situation that DID need a pretty long hospitalization (hear that ER???) and to know that hubs and I were right to use all our wherewithal to get me admitted by the ER. (For that incredible incompetence/neglect/unprofessionalism, see links here and here and a whole lot of other places in this blog, of late.)

But yesterday was a bit of a wake-up call.  I've finally figured out one of the things that has me concerned.

For decades I've had extremely low, verging on dangerously low, blood pressure.  In fact - and I know this is a bit mean, forgive me - but each time a new nurse at my GP's office would take my BP, I wouldn't warn the nurse that I have low BP.  Each time the nurse would have to take the BP measurement again and again until hubs and I would burst into laughter telling the poor soul which numbers she should head towards.  Hey, we get our jollies where we can!  

Just as each member in my family has something about me that's a "tell" as to how bad I am on any particular day - hub's is the color of my lips: no color or blue - my "tell" to myself is my BP.  If my BP is high (and hubs is experienced in taking BPs) I know that I'm really sick and I try to stay in bed, emphasis on "try."

Before going on, yes, I do understand that the BP is only one part of a complete picture and that everyone has their own unique BP numbers.  However, before I became really sick, my normal BP was always 120/80, a very good BP level.  

I also have orthostatic intolerance, which adds to the danger of the low BP.  Typically, in bed my BP is 90/70. I sit up and it goes down to 80/60.  I stand up and it drops to 70/50-55.  My low BP is one of the contributing factors to my falls.  It's also a contributing factor to why I can't do things.  For example, it's been years since I've been able to take a shower, I have to bathe in a tub.  I can't stand anywhere, I have to be seated.  I can't eat at a table, I have to eat in bed.  You get the picture.

All too often, going to go see my GP is really strenuous.  (Understatement.)  I'm in too much pain, I'm miserable because I haven't slept in 24-72 hours.  I have a monster migraine or I'm simply too weak, I'm "fragile" (I hate that word!) and so on.  By the time I get to my GP's office, on those really bad days, my BP will "skyrocket" to the 120's.  For me that's validation: I'm not being lazy, I'm sick.  Yes, lazy.  It's one of the Achilles Heels I live with.  I fear being lazy. (Hence so many home accidents, falls, etc. And scarier is that I do have a moment of being unconscious.)

Furthermore, with my BP in the 120's, I know that I really have to try to stop doing the little projects that I give myself so I don't go stark raving mad from boredom and inactivity - or to distract myself enough to ignore the awful pain.  However, if I don't stay in bed here are just a few of the weird things that have happened to me.  Believe me, these are just a few of the examples: 

• I really wanted a cup of tea but hubs, on this particular day, had given me a warning not to get out of bed.  After a few hours, I couldn't stand it and went down to the kitchen.  As I opened the cabinet, a mini-Cuisinart fell down and its sharp blade cut my forehead.  (OMG: 10+ years later it now occurs to me how it could have been an eye that got hit. Gulp!)  You know head wounds: blood was all over the place.  Despite that, I was way too sick to go to the ER for stitches, even with an ambulance.  Had the house been burning down, honestly, I wouldn't have been able to get myself out of bed.  An aside: for months people would tell me (especially doctors) that I would have a nasty scar across that valuable piece of real estate.  This was before my body stopped making (adult) human growth hormone and I was always freakishly lucky not to scar.  That, along with a bit of lavender essential oil, left no scar whatsoever on my forehead.
• One Thanksgiving: I was feeling weak and shaky from having cooked and baked since the weekend and hubs was insisting I get to bed.  However, I didn't want the "Pillsbury" Thanksgiving/Christmas Eve/ Christmas Day/New Year's Eve and Easter dinners my poor husband tries to do. (He means well and it's not his fault that he lacks the cooking and baking gene, but....) We were down to our last couple of hours before the actual dinner, which we all know is the most frantic part of any festive/over-the-top meal.  "Just let me finish this!" "No, go to bed NOW!" was said quite a few times. Without thinking, I picked out the blade in the regular-size Cuisinart - and sliced the tip of my thumb extremely deeply.  When, after 10 minutes it wouldn't stop bleeding, despite elevating my arm above my head, I had to go to the ER.  Yet another Thanksgiving to remember!
• One more of the many incidents and I'll put you out of your misery. OK, two.  I got out of bed to go to the bathroom and in "coming to," was surprised to find myself on the floor.  On top of me was a wicker tray with stand and a wing chair.
• BEST: in the bathroom I passed out.  You know the principle: A body at rest stays at rest, a body in motion stays in motion.  As I passed out, my arm went into the toilet down to the bottom, my head ricocheted off the toilet paper holder (breaking the holder), continued to ricocheting by hitting my shoulder hard on the sharp edge of the bathtub, ending up bouncing my head off the hard corner of my vanity.  

So BP has become a huge motivator in getting into bed and "resting."  

Last year I declared war on my health.  Oh, I've been at war to get my health back for decades, but this wasn't just war I'd now declared.  I now wanted a nuclear war declared on whatever is making me so sick and the accelerated speed at which I'm deteriorating - and losing body parts!  There aren't too many spare parts left after all.

Instead, I had another whopper of a year in terms of how much time I spent in the hospital.  Luckily, I didn't break any records, mainly the one year when I'd spent more days in the hospital than I had at home.  But this year has been close to a record-breaker.  

Getting back to the GI appointment.  My BP registered at 150/90 (if I have the diastolic right).  Hubs and I have a game where we try to predict what my BP will be, based on how many melt-downs I had in getting ready, how often I had to sit in order to prevent passing out, how much I'm shaking and all that jazz.

Boy, were we wrong.  We'd thought it would be the high 20's.

And that's what is bothering me.  Lately my BP has been too high, even breaking records with numbers such as 192/104.  That's not good for anyone, but especially someone whose BP is often 70/55. 

I don't want to put a band aid on the high BP by taking medication that will lower it.  I want to get to the bottom of why it is that suddenly the 150's are coming in regularly and that I keep breaking my BP records, that I'm into new, disturbing numbers now on the other side of the pendulum. 

What the heck is/are the problem(s)?  We're still on the "Hunt For Red October," where I was over a year ago. And how can this problem be resolved when doctors don't spend enough time with you in order to try to figure out what the underlying problem(s) is/are, nor communicating with your other doctors (as they did back in the day!) to figure out what is going on?

At any rate, I'm scheduled for a colonoscopy in early January.  And I came away from the appointment with information on the colon which I didn't have before.  I'll describe those tidbits in a future post. 

In the meantime, I hope everyone's doing their very best - only better!  Happy Holidays!  Ciao and paka.

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Catching Up....

Soon, I hope!!!

I've been on a bad streak in the last two weeks, to put it mildly. Nausea, migraines, my fibro beyond the pale, the CFIS/ME/CFS kicking in all at the same time.  I had thought this last bad streak had finally culminated. Ah! But that wasn't the case at all.  By 4:00AM Thursday hubs found my head not on the keyboard - oh no, that would have been too simple.  Instead he found me on the floor, having fallen sideways off a rather substantial upholstered chair.  

Yes.  Falls: my life, it seems.  I was left with a hint of a black eye, abraded hand, swollen lip, swollen inside the mouth with a front tooth that hurt whenever my tongue would touch it or I attempted to eat, plus a few other goodies I've forgotten, thanks to short-term memory problems.  So, basically not to disturb my tooth, I'd given up on food for a few days.

But did my adventures stop there?  OF course not!   Yesterday, hubs found me on the sofa by my bed. Evidently, I wanted to write a post (can you imagine the gobbledygook??) and to make it "easier" to get to the computer, I thought I'd get out of bed via the foot board.  (Yes, because getting out of bed via a wooden foot board would be SOOO much easier and faster than getting out of the bed the conventional way!)  I hated to call hubs at work.  However, I didn't know WHAT was going on with me.  (And how I got to my cell phone is beyond me!)

I must say that I'd really done a great job of it.  That left leg of mine is completely unreliable thanks to my compartment syndrome surgery: I must have hit a nerve in my hip which was untreatable.  Unfortunately, having used that left leg for so many decades, I'd learned to rely on it, quite a bit in fact.  Ditto my left hand, which was damaged and underwent emergency compartment syndrome surgery.  Therefore, it's rather easy to misuse that foot and hand, and thus get myself into a FINE pickle.  At any rate, I fell hard, having hit my eye (again) and increasing the slowly developing "almost" black eye, with beautiful abrasions on that eye.  Cheek, yep.  Forehead, yep.  Left hand abraded and it looked like nice black and blue marks might appear, yep, with some abrasion on the right hand as well.

What's a girl to do?  I have no idea.  These past two weeks it seems as if I have been living on migraine meds and painkillers with very little relief, if at all.  The migraines are so bad that the ONLY reason I won't go to the ER is because I fear the treatment I'll receive because migraines are "invisible."  You get there and the TV blares, staff becomes rude because they assume you're a drug-seeker.  Going through a repeat of my history is daunting.  Lighting there is a nightmare and too many of the staff were never taught to speak with their "inside" voice, not shout as if I'm deaf - or perhaps don't understand English  - not quite getting it that loud talking won't cure anything at all.  Worse, upon having hubs politely explaining that I have a migraine and could the person please speak more softly, only gets taken as an insult and the voice inevitably gets louder.

The nausea is almost non-stop.  And I've also developed a couple of crazy symptoms: upon eating I get pain. Not, a stomach ache, but huge pain all over.  Doctors have told me that this has been described in medical literature, but no one knows what causes it.  You'd think this would stop me from chowing down everything in sight, but nope, I still consider that food is going to makes things better. Plus my appetite is completely out of control! I tried to stop eating for a few days but no joy!

So, those of you who are followers of my blog, followers on Facebook, and my twitter family, you can see why I've been mostly out of commission.  I think the video below expresses my sentiments MUCH better than I can. Besides they're cuter!

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

For those who can't get this on their mobile devices, the short song is here.  I'm not quite sure how it works with YouTube: hope giving credit to the person posting it is kosher!delboy85017  The song you want is "Gloom, Despair, and Agony on me...:

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!

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.)

My Hair and Beauty Outings...

Don't we all want to come home from the hair salon looking like we did in our 20's?

On Saturday, I will hopefully have an appointment for my hair with a few other goodies thrown in. I've now gone at the very least eight months since my last hair appointment and I'm looking especially pathetic and old, gray and dull, not to mention "holy," which will become clear in a moment. I'm always worried about the whole process because of three reasons.

First: This visit has me particularly uneasy because I've been so sick that we've lost count as to how many appointments have had to be cancelled at the last minute.  I feel like a second-class citizen when I walk in after so many cancelled appointments.... I just hate being so unreliable. Really hate it.

Secondly, I must admit that I do have a real love/hate relationship with going in for my beauty adventure.  I always say, with no sarcasm or exaggeration at all, that I'd rather have a root canal done than go in for a hair appointment.  You see, my hair is very fine and thin...and getting thinner every day, unlike my body (groan).  About 15 years ago, I finally found a miracle worker in Pittsburgh, an hour drive well worth the "health cost."  I'm trying to figure out how my talented and imaginative Diana will attempt the latest challenge - a four-inch bald spot that resulted from the incident I had with my arm/hand back in November. She was already working around two other bald spots but they were just babies compared to what I've got going now.  I've been using men's Rogaine foam (I know it says that it's not to be used for women but I did some research and it looked kosher for my needs) plus Phyto vitamins for hair, something that's helped me in the past.

However, I am arming myself with pictures of when I discovered that crater, six WEEKS AFTER coming home from the hospital.  Did no one think to mention that I had this huge white scalp showing in the back of my head? Did they honestly think that I wouldn't notice it eventually??? Plus, because of that tiny problem of my almost dying a few times during that hospital thing, my hair in general had started falling out.  Anyway, I'll have those pictures for the moment Diana sees that huge hole in the back of my head and mentally throws up her hands and finally admits defeat. Poor woman needs some hope that this latest bald spot at least has a chance of growing back in. Should be interesting.

But going in for my beauty adventure is always an experience I dislike/hate for many reasons despite the fact that the women (and men) who work there are wonderful.  I love them all.  They are kind, not noticing how ill I am without appearing callous, yet never condescending nor unconcerned, yet at the same time appearing not to notice my cane. Hard act to do well!  Of course, I don't know what goes on behind my back, but  I do love two women there especially, Diana, the aforementioned hair genius, and my newest discovery, Lan, who does a beautiful job of dying what I have left of my brows and lashes so that they can be seen.  I must admit, however, that I'm so looking forward to Lan noticing the bit of growth in my brows from the hair growth products I've been using as religiously as a person with severe CFIDS/ME/Fibro can, and will be crushed, I know, if she doesn't see a difference.

BTW:  Having discovered dying of lashes and brows has really made my life a WHOLE lot easier - it eases and lifts my "self" beyond explanation.  Hubby, who takes me there and then runs errands for me between checks as to how I'm doing, doesn't understand why all this makes me feel so much better.  However, he can SEE what it does for my spirit and thus loves the whole adventure - certainly more than I do - and actually gets excited about it all, despite my acting like a grinch the whole way there.  Did I mention that irritating hubby is also the sweetest, albeit delusional, hubby ever?

Back to Lan: at least after she's done with me I have an idea as to where to go to fill in those brows with brow powder and can find my lashes to put mascara on...otherwise all is invisible or non-existent.  And since my eyes are so dry, I can actually get away without the mascara if need be and not scare any children who may cross my path.

Finally, going to the beauty farm is not an easy deal:

First, I have to feel well enough to get out of bed, bathe, put on some makeup, see how awful my hair is and SORT of fix it and then find something (other than a nightgown) to wear which fits my ever-changing body. This is major league for me.  By the time all this is done, because of the sweating, trembling, shaking, almost-passing-out factor, you can imagine me employing the "up, rest; up, rest; up, rest" method forced on me by my cruddy body.  This takes at least two to three hours to get through.  Come on CFIDS'ers, CFS/ME'er's and Fibro's, admit how hard it is to start your life each day, but especially when going out of the house!  And though we all have many of the same problems, we all manage to have different problems also, and so in the end, it's never an easy task.

Furthermore, there's that funny little annoying problem I have with sleep - the BANE of my existence.  My life has no pattern nor any predictability or reliability at all because of the sleep factor.  I never know WHEN I'll fall asleep, IF I'll fall asleep at all, for how long WILL I sleep?  And if I do happen to fall asleep, will it be an hour before I have to get woken up for the "get ready to go routine"?  Am I going to be "sick" that day, as in I'm so sick that I can't stop falling or there are huge ulcers in my mouth or any number of conditions that keep me a hermit?  I absolutely hate it when hubby sees me in the morning and the truth hits me as I see a certain expression on his face: I will not be able to go under any circumstances, I'm just doing that badly that day...no adrenaline will help, no painkillers. After so many years, he, as well as my kids, can read the signs, among them the blue or no-color lips.

People always say to CFIDS'ers, "but you don't look sick!"  We absolutely, positively and indubitably cannot stand those words.  We're sensitive about people believing us, so we all too often feel those words undermine our illness.  Furthermore, it IS an insult because we know that we happen to look like something you stepped into by accident in a cow pasture. We look horrid despite the makeup...often worse than at home without makeup, because we usually look like a marathon runner does at the end of a 25K race - not only are we all sweaty and clammy, but our hair is absolutely wet, precisely because it IS the equivalent of a 25K run for "us."  For you non-jocks out there, imagine how you'd feel after a marathon.  At the finish line line you'd be breathing hard, sweating, legs feeling like jell-o, nauseated and so forth.  That's just a bit of how I feel before I reach the front door to go out.  Now that I think about it, perhaps it's a good thing that we have an hour drive to the salon: it gives my body a chance to rest before the fun really begins!

And finally, you've spent the week before doing absolutely nothing, trying to built up what I call "health credits."  If you don't put away those books lying around your room, you get x amount of health credits.  If you stay away from the garden, if you refrain from taking a bath, washing your hair or your face but so many times in the week before (never in the week before, if I'm being honest about it), you earn another unknown amount of health credits. You're constantly thinking about those darn health credits - or being reminded of them by a family member should you forget - in everything you do.  Normally, I rarely go downstairs to the kitchen, living room, etc., areas, but the week before a doctor's appointment or a beauty adventure, I absolutely NEVER go down there.  I need to save up those health credits.

I'm excited but scared....each and every time.

So, until Saturday, I'm living on tethers, hoping against hope that this week I WILL make it to my hair and beauty appointments.  I'm eating as healthy as I can, trying not to allow anything upset me (ha!), focusing on the positives (sorry, but another ha!), saving up as many health credits as I can and using any other of the other weapons in my arsenal of getting out of the house for the day.

Hopefully, the team can make me look Bea-U-ti-ful! ;)