A Bit of Happiness, A Bit of Sadness

We've been much too serious for the last few posts, so I thought that today I'd try  (emhasis on "try") to lighten the load a bit for those of us living this nightmare condition known as CFDIS/ME/CFS and fibromyalgia.

Some of you may have noticed by now that one of my most-read posts is the one in which I wrote about the fact that even we sick want and need our beauty routines, which can be found with this link.  It perks me up, most definitely, if I can find a day that no matter what, I'm going to have a few hours in which I have the energy to indulge and make of it what I need - just a little time off from my stupid, hated CFIDS/ME/CFS and fibromyalgia - when I can self-indulge and pamper myself!  So come on: we can do it!  

I'm convinced that the first part of the equation is to buy something really decadent and if hubby or life-time partner gives you a look, you give him/her a look right back so he/she will never again complain about the cost of women.  Instead remind him that it is the woman who is the multi-tasker, going back thousands of years when "men" had to go out and hunt (la di da!) for the food while sad and exhausted woman stayed in the cave with the toddlers, usually one or two still breast feeding, while taking care that the toddler(s) who would inevitably try to crawl into the fire stayed away, all the while trying to cook up some food for the family - and that granddad was given smelly rags of all sort (greenery ones, of course) to take care of the abscessed leg, which would either kill him or, when desperate measures are called for, the leg would get amputated and then THAT would indeed kill him off.  Heck, woman was probably so overwhelmed by the men that she probably sent out gentle (and not so gentle) hints that it was time for some fresh meat, just for a moment all to her own without high maintainance "hubby" for her sanity.  She knew she couldn't take on hubby's job of killing animals (though how she'd love a few minutes to herself and most likely could have done a better job of it!) but knew that if she weren't in the cave, things would seriously deteriorate, all because she knew that if she weren't in the cave to multi-task, things would go awry, like REALLY AWRY!  Too many people depended upon her and the family wouldn't/couldn't survive more than an hour without her presence.

(Please pretend that there is a transition here!)  Last week, I have to admit that I was feeling a bit depressed, as I am indeed now.  I know that much of this is due to chemical changes due to the huge assaults that my body has sustained.  Whereas before I'd known I'd been most definitely in the sad stage, I'm now precariously on the edge of sadness and depression,  building up to the depression phase.   And the crazy part is that I feel that I have no right to feel sadness or depression since, in so many ways, I've been so much luckier than most.

I know that we should be responsible for one's own happiness, but I was never built that way, and after so many decades of trying to change myself, I know that it's not going to magically appear in me now at my advanced age.  Things will sky-rocket towards Christmas, something I dread with every fiber of my being.  Couldn't we work on getting the house in order, finish the old projects and skip all the expense of Christmas, which has become certainly too commercial and makes everyone crazy?  

If you're a mom who goes all out for Thanksgiving and Christmas, what are some of the strategies you've developed?  I really would love to hear them!

Until next time, I hope everyone is doing the absolutely best they can be, only better.  Ciao and paka!

P.S.: Sorry if I sound loopier than usual.  The back pain is horrendous and I can barely get up without passing out.  How much more can this stuff keep going on?  Next post I hope will be a beauty post, so maybe I'll be able to fulfill the happy, happy, happy!  I know that I really need to lighten up, but it's a bit of a problem when recovering from surgery and feeling worse than before. :)

Friday Tidbits: But This Is My Life Every Single Day!

Hi all!  In case anyone is counting, it's now been a week since my very unexpected surgery.  Here I am, writing in real time, having snuck up to my computer while no one's watching.  I thought I'd catch everyone up on what's been going on with, yes, the tidbits of my life, so to speak!  

As always happens to those of us with CFIDS/ME/CFS and/or fibro, nothing goes smoothly and things always end up being pretty hysterical - "hysterical" as in funny.  When I made the "heroic" decision to not have my gall stones removed a couple of years ago, I thought that I couldn't make that commitment because we never knew when the other shoe would drop and my daughter would need me to be with her at the "major medical center."  I felt I wasn't able to allow myself six weeks downtime.  Well, it's now Friday, so I thought I'd give you my thoughts in bullet points - just to keep that "Friday Tidbits" going: I do like a little bit of predictability in my life.

• Well, Surprise!  WHAT???  Going back to my "downtime."  I've learned, in the last few days, that my downtime will be more like six months!   The craziness is that I didn't realize that getting your gall bladder out was NOT like getting your tonsils out, even taken out as an adult.  Because of various complications with my tonsillectomy, I was in the hospital for five days, the usual being that you're sent home soon after those suckers are cut out.  It wasn't even as easy as my emergency hysterectomy or emergency appendectomy. Nope.  (See a pattern here?  I don't tend to get parts removed until need be!)
• As it turns out, the gall bladder is an organ vitally needed and the body has to make large adjustments. Throw in all the extenuating factors, that my body hasn't recovered from, the compartment syndrome surgery almost a year ago, that I am a super-sick mama with CFIDS/ME/CFS and fibro, that I'd undergone a trip halfway around the world just a few months ago and then had undiagnosed pneumonia on top of it all, that I'd developed hypothyroidism within the last couple of months, with a gall bladder that looked bad (inflamed) and stones that had nastiness around each of them: well, you're talking about the perfect storm.

Here's the beauty of it all, however.  But let me backtrack for a moment. (You didn't really think I could go a whole week without backtracking somewhere along the way, did you?)

• My surgeon was absolutely fantastic as were all the staff.  He actually sat down on my bed (huh? hadn't he heard that doctors don't go into the patient's space any longer?) and then invaded my personal space again, getting INTO my face, making contact with both eyes to make sure I was listening to him.  Dear God!  Did I focus at all about what the man said?  Of course not: I may be old but I'm not yet blind!  All I could focus on was how much of a hunk he was, still, after 20 years of my not having seen him anywhere around town.  As he talked more and more about the surgery, I couldn't help wonder, did he regret going into medicine and giving up football?  (We know way too much about everyone in this town!)  Those eyes.  The white hair: why do men get to be better looking with age?  Too bad I don't have a bunch of local friends any longer so we could dish!   Darn!  How was I to take things in with such a good-looking hunk doctor?   Like I said, I'm only human, not dead!  And much to the dismay of many, I AM truthful!  You're just getting the facts, oh dear reader!  (Oh no!  What did I say when I was under???)
• It wasn't a short little pep talk either, not once of the three times he gave me "serious talks"!  No, he gave me statistics as to how much healing would be accomplished at the end of a day, at the end of a week, at the end of three weeks and right on up the scale to six months.  Hearing those stats was pretty shocking.  Ah, but did they stay with me?  Of course not!  There are all sorts of statistics as to how much a patient retains from a doctor's visit: it's only about 10%.  Well, someone should do a study on how much is retained when the doctor's a hunk - and then when you're zonked out on pain and/or pain meds.  Good thing that the doctor knew to give out a lot of handouts, and not those wimpy sorts given out by hospitals, but tailor-made for his patients and the type of surgery with or without complications.  I suspect I got the "more complications" sheet.  Plus I now know that he's a REAL doctor because the added instructions were in awful doctor handwriting.  (Hey! The man had to have SOME sort of "defect"!)

(Oh good Lord: I just got a look at the description of the laparoscopic removal - excuse me as I need to run to bathroom and barf!)

• The hospital experience was actually quite fun.  I saw a few friends I'd not seen in ages.  People come and go more or less as much as they want and that is one of the reasons I love going local.  I was there so little (in and out) that my priest didn't even get a chance to find out I was there.  I heard one team doctor yelling that he didn't give an [expletives] what the [expletives] insurance companies wanted or didn't want but I wasn't going home until he [expletives] was good and ready to send me home.   Sigh.  I hear this sort of thing every time I get admitted: you can absolutely see just why the insurance companies do NOT want to recognize CFIDS.
• As is usual, when the 3AM hour rolled around and things got quiet on the floor, the staff's guards are down and they talk to you about the real picture of what's going on.  But a funny thing happened: someone had seen me doing my DIY facials on day #1 and wished she could wear moisturizers without breaking out.  After this "youngin'" left, I thought about it for a moment, then ran (OK, so I "hobbled") to my makeup area and took out three moisturizers (of several I just happened to have with me!) and called the young lady, asking her if she could come by, "when you have a chance, nothing important."  When she came in I asked her if she'd like a tiny demo of what a light moisturizer felt like, what a medium one felt like and what a heavy one felt like, explaining that the light one would be best for summer.  Someone found out about this and before I knew it, I was giving out advice on mascaras - I only remember because I didn't have my tube of Blinc mascara, which I've tried a couple of times and been very fascinated with: it coats your lashes like a tube and doesn't come off until you take it off the way you're supposed to.  I happened to have a few blushes (how???? I have NO idea!) and gave a few pointers there as well to someone else, all between bouts of pain.
• When I did come down with a bit of a melt-down, it was a nice - though extremely embarrassing - moment.  My body had reacted to the thyroid medicine the day before with a tiny rash that I thought was due to stress and I never thought to mention it to anyone, it was just so "ordinary."  The next day, after surgery, I was given the thyroid med again and I got a bigger rash, developed invisible itching areas and parts of my body started displaying hives - I was totally miserable and was trying to avoid a steroid shot like crazy.  Now this was the final blow.  No one could figure out what was happening until I looked up hypothyroidism and skin rashes on my trusted iPad and found that a rare reaction much like what I was experiencing is known to occur if the brands are switched around; to make it easier to understand, it's basically a filler/formulation problem.  Well, given that I was in pain, that I'd not slept for how many hours (minus the operating time, when I woke up in recovery and asked if I could walk around) not having eaten in 60 hours and nothing to drink in 48 hours, all my defenses were down and I just lost it, saying "but this is my life every single day!"  They thought that everything that was happening was "unusual" and that I was just "high-maintenance" for the moment.  No, my entire life is high-maintenance.
• The poor nurse. She moved her things into my room and did her work there and would break off to talk to me when she thought I needed a kind word or just to talk, or if she was needed elsewhere.  I felt like a wimp but frankly, didn't care any longer.  She, on the other hand, couldn't believe that anyone could go so long with no sleep and kept mentioning that to everyone as if THAT was the biggie at play.  I tried to impress upon her that what she was seeing was just a tiny bit of my no-sleep problem.  As with everything with these illnesses you can't believe it unless you see it for yourself.
• And finally, here's the "beauty" of all that happened, the part I digressed from in the beginning: I want to mention the great support of the CFIDS/ME/CFS and fibro community.  Thank you to one young lady for tweeting all her followers to pray for me regarding surgery.  It was sooo sweet to see that on twitter.  (I hope I didn't imagine it!)  Thank you to so many who prayed on your own for my successful surgery.  And thank you to a special reader for the info you sent me regarding tips on how to take care of myself after coming home.  Had it not been for your words of advice, I would never have realized how careful I had to be, thinking - before you'd written your comments - that I was having nothing more serious than any previous surgeries.

The pain is mostly gone.  In fact, true to form, I'm actually feeling far less pain now than I feel on a "normal day."  I am convinced that this happens because my immune system has something to fight against (the healing that needs to be done) and consequently the other parts of my body get a rest.  My biggest problem now is huge weakness, worse than I've ever had, which is saying a lot.  My mind can't get around the weakness because its bedfellow, pain, is missing.  I do still have trouble talking, thinking, walking, feeling overwhelmed.  Not to jinx myself, but on the whole, this has been a reprieve from my normal life.

As usual, I hope that everyone out there is doing their very best, only better.  Happy Weekend to all!   Ciao and paka!

"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!

Friday Tidbits: 10 Beauty and Hospitalization Tips

Considering that I'm in the hospital today and, at the very least, tomorrow as well, I thought I'd address a few hospital tips for those with CFIDS/ME/CFS and fibromyalgia, for a more "successful" stay.   Yes, I'm trying awfully hard to get this "Friday Tidbits" going and on schedule to boot!  Ah, what dedication!  (Ah, what boredom and a bit of nerves as well, I freely admit!)

1. Bringing earplugs with you can be heaven-sent if you are sensitive to sound.  I finally found a brand and type I love, Mack's "Dreamgirl Soft Foam Earplugs" (available at drugstore.com).  Normally, I feel earplugs are too uncomfortable to bother with, but these are really unbelievably comfy.

2. Eye masks are great for light sensitivity since it's never really dark in a hospital. I found a pretty generic type and for the first time ever, I'm not only able to tolerate it, but actually enjoy wearing one, even at home when I happen to finally fall asleep during the day. This is truly amazing since I hate most things on my face. I bought the "Body Benefits Satin Sleep Eye Mask," at drugstore.com.

3.  In my down time, to deflect from not sleeping and to try to ignore the pain, as well as the dreaded surgery to come (let's get it over with NOW is my feeling!) I've started in on my DIY facials, much like the long-haul flight treatments I discussed when flying out to Malaysia. I'm doing a good cleansing - hitting those pores and hyperpigmentation with everything I have! - along with exfoliation, treatment masks, serums, and other treatments like SkinCeuticals CE Ferulic Acid (see this link for my reviews here and here ) with moisturizer or Liquid Gold without moisturizer.  I'm indulging in the Sisley Express Flower Gel Mask, as well as my personal Hall of Famer, Elemis' "Papaya Enzyme Peel Mask" - not all at the same time, of course!  In other words, as I wait, I'm doing "the works" and enjoying "being a girl."   Who knew a hospital could be used as a spa???

Of course, I'm sure that later today, post-op, DYI's will be the last thing on my mind but as I stayed up all night with my usual insomnia and my out-the-wazoo pain, I'm trying to have some fun and trying to keep my patience to whatever maximum I'm capable of, which is, and always has been, almost zilch!  I've already experimented with one round of makeup and may be up for a second round if I get too bored and can summon the energy to go there again.  Actually, I'll try just about anything to make the waiting time go by faster!  And with the micellar water, it'll take just seconds to get any cosmetics off for the surgery once a slot becomes available.  (Yes, I'm shallow, but sooo easily pleased!)

4. I'm happy with myself and annoyed with myself, both.  I'm happy in that I managed to put quite a few mini-sized products into a "travel bag" but was more or less haphazard about it, knowing there'd be no real chance of a vacation any time soon.  I hadn't anticipated hospitalizations, however.  (Where IS that so-called brain of mine?)  So, after I was settled in my room, hubby made a mad dash home with an extensive list and had to scour cabinets and drawers for certain products and clothing, electronic devices, chargers.  You'd think I'm in here for, at the very least, a two-week stay!  Thankfully, he didn't need to start from scratch, but it was still quite a scavenger hunt.  The real basics were there, however, in one place, so, hallelujah!

5. I love flip flops for hospitals.  They are easy for "on and off" and afford more skid-free walking than slippers or those socks with "grips" on them.  But don't go for the real cheapo kind which are harder to walk in and cause any number of problems, such as blisters.

6. Try bringing a notebook: they're great for all sorts of things!  For example, I like to keep track of my vitals, even how I'm feeling. I should, actually, list symptoms but that's just so beyond me at the moment. Back to my "vitals," I came in on Thursday with a BP of 90/45 but am now, on Friday very early morning, at an unheard of - for me - 145/90 and 142/98, due to the pain factor.  If I hadn't written these numbers down, I'd question my memory, and rightfully so, because of fibro-brain.  I also make lists of questions for doctors and nurses, which meds I'm given and when - ESPECIALLY my pain meds - and who my nurses are/were because inevitably someone will ask me, somewhere at sometime about something saying, "well, who told you THAT?" and I have no clue.

7. I like to bring a bunch of my own washcloths and hand towels, and in colors other than white.  The washcloths and towels that hospitals carry abrade the skin all too easily, or bring on rashes and even hives.  So, I bring my own and in order to not lose them, in a color as far from white as possible.  I use a hand towel to dry my body since do you REALLY need a bath towel?

8. I'm loving those sponges on a stick which are used to moisten your mouth and lips - no water allowed, now going on well over 48 hours so far, and ice chips monitored closer than any restaurant chef with his precious truffles!  I think I'll try to get those for home use as well since the various lip balms I have are simply not enough.  Perhaps these little sponges can work synergistically with lip balms?  One can only hope!

9. Micellar Water, especially my beloved Bioderma, is a life-saver if you can't get out of bed for a good facial cleanse. I wash off the Bioderma with a damp washcloth and then put on a serum followed by a treatment (anti-aging or hyperpigmentation, for example), followed by a good moisturizer.

10. Since the air is so dry, I'm also using a "water-in-a-can" such as Evian or Avene. Its fine mist helps a bit with the very dry eyes I have going from so many pain meds, so every little trick helps!

So, there you have it!  I'm not sure when I'll be back since so much depends on how the surgery and recovery goes, fibro-brain the biggest concern, of course! Hopefully, I won't have too much down time - I wouldn't want you to miss me too much! (Joke!)

Wishing all a super weekend with everyone feeling their absolute best, only better. Caio and paka!

Surprise: "It's Not Nice To Fool Mother Nature!"

Mother Nature needed a job back in the 60's, so she endorsed Chiffon Margarine.

And what was it that I was asking last Thursday with my post, "Autumn Venting"?  With my newly-diagnosed hypothyroidism, I was wondering just how many more spare body parts I had available in my "innards" for either "ceasing" function - as in my non-production of adult human growth hormone - or "malfunctioning," as in my thyroid. And that's just the tip of the malignant doings of the "evil prankster" commonly referred to as CFIDS/ME/CFS and fibromyalgia.

Well, I suppose that I should be thankful to Mother Nature. She seems to be the only "being" capable of any influence over me - as in forcing me to lie down and stay down when need be, keeping me away from my blog when it gets to be just too much for my health, or sending me to see a doctor when I just don't get the message by any other means.

But today she - Mother Nature, that is - and Clarence, my guardian angel, combined forces.  (Incidentally, I actually named my guardian angel "Clarence" back in the beginning of this blog, feeling he deserved a proper name of his own after everything I've put him through over the years.)   But I suppose I've proven to be a bit much for Clarence alone lately - "lately" as in "relatively speaking" - and he needed some additional, but very effective, help. After all, I can't walk?    Well, then that means I'll simply crawl!   Therefore, I suppose - and mind you, this is ONLY a working theory since I can't actually read Mother Nature's thoughts, not even Clarence's - but I surmise that Mother Nature was called in to help this hopeless cause, moi!

Furthermore, there ARE, evidently, more "spare" body parts that CAN go, as I learned early this morning.

Last night I fell asleep in huge pain, at a huge unusual 10.   I've used the number 10 only a handful of times in my 38-year history, reserving it because I know things can ALWAYS get worse - but for once hubby misread me and thought it the "usual."  I woke up a few hours later, however, not able to move around much, with even more extreme pain.  After an hour and a half of weakness, pain, a bunch of other cruddy feelings/symptoms which I've thankfully repressed, and unable to move whatsoever, I finally woke up hubby to tell him that I needed to be taken to the ER STAT, and that driving me there would not do, even if it WAS only a 10-minute ride.  It hurt so much just to breathe and standing without falling almost such an impossibility that I've been crawling in order to do almost everything I do - and yes, crawling is every bit degrading as it sounds.

I've also been experiencing frequent falls lately, but unlike any I've had before.  Yes, spots and stars in front of my eyes, vision problems galore, blacking out and then gracefully passing out, somewhat like when Marie Osmond so gracefully collapsed on "Dancing with the Stars."  Yes siree, Bob, all that and more.  Now it's also my veins feeling as if they will implode and explode, both at the same time.  I can hear my heart throbbing in my head and feeling like IT will explode, as well as a whole new set of new migraines going on which no meds are helping.  My legs give out, I fall out of bed, I can't breathe when I get out of bed, I start shaking, spastically...oh, the list goes on and on.

As it turns out the gall stones which were discovered about two years ago (see March 1 post) are in terrible shape with fluid around them, the bladder is inflamed and since it is almost non-functioning, it too will have to come out.

But the surprise of the day was that I have pneumonia on top of it all!  Evidently, the surgeons don't like to operate when there's any infection going on but feel that the situation is such that I need surgery ASAP.  All the OR's and their spots are completely filled up but everyone's keeping fingers crossed, hoping that somehow a vacant spot will become available at some point tomorrow.

Well, "SURPRISE! Surprise! Surprise!" as Gomer Pyle used to so famously say.   I suppose that all that coughing which has sounded so much like a seal, described back in July, and still showing up, wasn't croup after all, but the pneumonia.  Now it's no wonder why I was so weak getting out of bed, having so much trouble moving myself from one side to the other side in my bed, too often all too weak to even pick up a glass of water and other such nonsense.   On the other hand, who knows where the hypothyroidism, my recovery from the trip to Malaysia, gall bladder and gallstones, insomnia, fibromyalgia, migraines, nausea, sweats, swollen lumph nodes, pneumonia, the DD, and any other mysterious symptoms going on still not identified but being explored begin and end?   It's all tangled up together like spaghetti.

So, get pneumonia, add a funky gall bladder and really messed-up gall stones, then add CFIDS/ME/CFS and fibromyalgia to the mix and you come up with pretty much a nice disaster or even THE PERFECT STORM - I don't mean to shout, but my techno-skills fail again as I want to emphasize, but don't know how to "soften" it by italicizing on my iPad.

I must say that thus far, I'm so happy to be in one of our local hospitals. (UNDERSTATEMENT!!!)  With yet another new building, the ER was a pleasure with beautiful, spacious private rooms - no curtain jobs for so-called privacy where everyone within earshot can hear your entire medical history. The entire area was blissfully quiet, so important for those of us with sensitivity to sound.  All the patient rooms on the floors are now private, thanks to the HIPAA privacy rules, and almost lush.  The staff has been on time with my pain meds thus far (knock on wood! and tphoo! tphoo! tphoo!), very kind and understanding.

Now, I wouldn't mind something to eat since I last ate Wednesday evening and won't be able to eat until some time after surgery on Friday, but it IS a rather small price to pay in order to get this part of myself figured out and to be done with.

So, hopefully, tomorrow I'll be under the knife and soon this little medical matter will be out of the way so we can get on with my other problems!  Thanks, Mother Nature and Clarence for getting me to the ER for this much needed operation, one which I kept managing to put off for a more convenient time!  I just hope I've not jinxed myself!   No pictures today, alas, but I'll try to slip one in once I get home and can get around a bit.

Finally, I hope everyone out there is feeling their very best, only better!  Ciao and paka, from my hospital room and my iPad!

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.

Friday Tidbits: You Are What You Eat!

My personal food bible, thanks to my BFF!

Well, here we are again, with TGIF, or as I think of it: TGINFOMO, "Thank God it's not fibro on my own!"  It would be TGINFAMEOMO but adding the "And ME" to the equation makes it a bit difficult to pronounce, I think, no? 

At any rate, that means it's also "Friday's Tidbits," the time of the week when I try to come up with a few tips or thoughts that have been circling in that brain of mine - you might remember that as the place no one in my family ever wants to venture into.  The saving grace is that the "Tidbits" are just that: small, short posts!  (Yeeha! I hear you!) 

As most of you know by now, I've been going on about my hypothyroidism almost ad nauseam, and to subject you to a tiny bit more of what's going on, I thought that since more results from the blood work have trickled in, I'd make a few observations that would perhaps work for just about everyone out there.  (Yes, my generosity of spirit amazes even me at times! ;))

I've been "celebrating" the hypothyroidism since I got the news by eating everything and anything within sight of me even though, paradoxically, everything makes me nauseated.  But really, when has nausea actually stopped a really good woman in "mourning" from eating?  Worse yet, everything tastes like cardboard - and 16th century cardboard at that. Yum!  Nothing like nice stale 16th century cardboard to tickle those taste buds! 

However, since Monday, I've put the brakes on my "celebratory feasts" and decided, "Irene! Ya gotta stop this food nonsense and try to get back to eating properly, d*mn it!"  After all, my year of getting myself to look human is slowly coming to an end (i.e., December 31 is, unfortunately, not THAT far away), I'm hitting a landmark birthday at the end of the month (I'd ignore that little mention if I were you: it's much safer that way.  It will NOT be a very pleasant day in this house, I can tell you that already!) and there have been way too many curve balls thrown at me this year to have put me anywhere near successful in "looking human" once again.  

But after succeeding on Monday with "eating right" I was shocked to see that I was actually able to accomplish one day of doing well!  (Irene style.  Don't forget my mantra: everyone has their own way; you just need to figure out what your own body does best with.)  I was shocked to see that Tuesday went off very well, and then Wednesday and Thursday also!  Oh my heavens!  What was happening to me?  I've not been able to motivate myself to eat "properly" since I got back from my Malaysian adventure.  What's changed?

Well, Thursday evening I got some more blood results back and saw, much to my surprise, that my glucose level is normal!  No wonder I was suddenly able to apply willpower and have it actually work.  No willpower in the world was working before because my sugar levels were all over the place.  (Even my old cinnamon trick wasn't helping me!)  A few other results came in as well, that are kind of funny too.  Not funny as in "ha! ha!," but as in "hey, that's interesting!" In the spirit of brevity, I'm going to make a few observations and tips, combining them for all to make life, as well as this post, (hopefully) more interesting.

• Did you know that it only takes about three days of determined effort to get rid of old bad eating habits?  Yep.  Once you make up your mind, that is, all you need to do is get through three days of getting rid of awful eating habits and it becomes a thing of the past.  Now that doesn't mean you won't crave "bad" things but the longer you are away from "bad" food, the easier it is to eat "right."  My personal downfall is sugar - and, of course, carbs in the form of potatoes and breads.  But I've not had any of those amazingly delicious foods in three days and though I know that the upcoming week can still be dangerous territory, once I get past the three-day mark, I am well on my way!  For those really interested in what foods I find most helpful and healthy, I highly recommend Jonny Bowden's 150 Healthiest Foods on Earth, where every type of nutrient necessary for optimal health is addressed with each "healthy" food mentioned.  (See below picture of what I mean.)  I just find the foods that agree with me best and go to it.  My BFF gave me a copy of this book a few years ago and out of all the healthful-eating books I have in my library, this is THE best, with one exception, which I'll get to one of these days.  I highly recommend this Jonny Bowden for everyone.  And to think I started eating from this book in order to take off 40 lbs!  I actually took 60-75 lbs off the safe and right way and felt much healthier in the long run.  (I've gained with the hypothyroidism so that's why you're getting a range.  But it WAS 75 lbs at one point for a few years.)  So, Jonny, here I come!  I've missed you, baby!

• The lab work has  also shown that I'm still clinically dehydrated.  All that drinking of water and running back and forth like an Olympian between bath and bed doesn't seem to be working!  However, I've been running fevers galore, so that's certainly a factor in the whole dehydration process.  I'm going to try to take more baths and soak for a bit in order to attack my skin from the outside as well as from the inside.  Wish me luck!  And I so hope the skin elasticity is not all gone!

• The good news is that I'm again spot on with my Vitamin D levels.  This number had gone down for the first time ever.  Now most can blame it on my not getting out into the sun (and how my mom would chide me - understatement! - for saying this) but the sun and light really are my enemies.  I was shocked to see that despite living as much as I possibly can in a Bat Cave, my Vitamin D levels have always been in the normal range and again, can only find an explanation for this in that I'm getting Vitamin D from my food and/or that my fair Slavic skin is an evolutionary process which doesn't require as much Vitamin D as a darker person would need, like my very dark Slavic mom.  But really, who knows?  These are just some of the things I think about.  And as I've often stated: I LOVE to think, much to my family's dismay!

In the end, I'd like to emphasize that what you eat is often what you are, such a cliché, I know!  However, I like to open a fridge and look at it as a medicine cabinet and skip the vitamin supplements if and when I can.  No, I'm definitely not enamored of salmon - nor any fish of any type - but I'll eat it at least once a week in order to get those important omega-3 fatty acids (while worrying about mercury and other toxicity, of course!).  I learned this food approach (the hard way) from my mom and then loved hearing this from Naomi Judd when she had her Hepatitis C crisis and was on TV with Dr. Andrew Weil, talking about how much better it is to get your vitamins and nutrients in food form.

Furthermore, just in the last few weeks there was a report questioning how helpful omega-3 fatty acids in the form of supplements actually are and the suggestion was that we should try to get those nutrients through food as much as possible (uh, duh???).  My take?   As of yet, we have no idea why actual food works better than supplementation: there may very well be a means that no one's discovered yet as to why "supplements" just don't work as well as the real thing. Just off the top of my head: perhaps the sugars or fiber in the food help the delivery system, but who knows? Yes, I do try to take vitamins and supplements, especially for the parts of me that are "broken," but really, I've found that getting those all-important nutrients through food works best in the long run, if at all possible.  

At any rate, I wish everyone a wonderful weekend with some great company and hope that all feel their very best, only better!  Ciao and paka!

An idea of what the individual sections on each food within its category looks like in this particular Bowden book.

Fibromyalgia: Is That All There Is?

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

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

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

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

But getting to my list:

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

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

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

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

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

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

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

But then I'm a bit picky, aren't I?

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

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

Autumn Venting!!!

Some days I feel as if I've swallowed a pumpkin whole - you know, as in the whole enchilada!  Let me explain, please!

It's been just over a month since I received word that yet another body part of mine had ceased to function.  I'm now going to have to start taking a count of how many more body parts can go wrong since I don't think there are too many left to spare!  Of course, this has occurred because of my funky CFDIS/CFS/ME and fibromyalgia body.  (We're not going to go into all the other problems this ol' body of mine is going through with the skin problems, sleep problems and so forth, or I'd be here for at least a month listing all the problems I have wrong with me and we ARE trying to keep these posts short, right?)

I finally had an extensive blood workup done again and though only one test has come back thus far, I do know it's the one for hypothyroidism (alone) and shows the thyroid levels being within a "normal" range.  It makes me happy, especially given how much I messed things up in the first week or so, first by not taking enough medication (not my fault as we were trying to find the right dosage), then taking twice the dosage, which WAS my fault since I was taking what I thought was the upped-to double dosage whereas in reality, i managed to double the double dosage (get that???).  Fibro-brain at it's best!  But somehow, we've finally gotten to the part of the blood tests which can accurately (huh!) show me what that thyroid is doing.  Further results are pending.

I must admit that in my naiveté or smugness (your choice!) I never expected such a rough road in fixing this problem. Oh girl, your name is "Hubris"!  I didn't expect this rough a road because hey, I'm an old-timer with new problems that are constantly coming up because of this cruddy illness/syndrome/disease that I'm living with and I've learned to deal with what life throws at me - well, up to a point.  I've long ago thrown up my arms and realized that for the rest of my life we will be working on dealing with the symptoms and trying to keep those under control.  For an old-timer like me, there is so very little hope of getting back an even semi-normal life.  

I absolutely do not mean this as a downer.  Instead, I mean this as a reality check and my life as a cautionary tale, especially for those who are "newly sick."  As I've said before, we accept these illnesses in this house, rarely getting too excited about things except for every few years when the poop really hits the proverbial fan and I go into a health crisis that looks like I may very well NOT survive.  Yet somehow those Bulyga and Lisovsky genes take over (the ones that didn't succumb to Ghengis Khan, Hitler and Stalin - that's pretty heady, hardy and stubborn DNA) and though they continue to not be able to overcome this illness, they nonetheless don't let me expire either.

I sort of look at this DD like a long life of "food poisoning."  If you've ever had food poisoning, you're "reassured" that you won't die. However, boy, at the moment of heaving out your guts, that's quite a curse, because while you're going through it, those are very upsetting words to hear! The last thing you want to hear is that it will not kill you.  I call it "threats" and not reassurances.  I most certainly hope and think that most are not in the "food poisoning" part of this illness: but watch it, or you may get there if things go on too long and if you do not do the sensible thing and REST, REST, REST and let your body heal itself!

With this hypothyroidism, I was, yes, concerned about the condition and it explained a lot of what was going on, but I certainly didn't expect it to take such a huge toll on me.  I thought it was going to be simply an unusual stumbling block on my way to figuring out what "new" thing exactly has gone wrong with me now, "big time," something that happens to me every few years when my body takes another nosedive and doesn't recover much.

Well, the stumbling block has been more like a boulder.  Actually, more than one boulder, as in boulders, in the plural. This well reminds me of boulders that some evil giant might put in front each of the Lincoln tunnel entrances going into NYC and there is simply no way that I am going to move those suckers easily, much less bother to anymore.  After all, why would I want to start messing around with the boulders when all is said and done?  Is going to NYC worth it - metamorphically speaking?   I mean really, you can get just about anything you want and need from all over the world these days via the Internet: food, clothes, movies, books.  Who needs New York anymore?  (Choose your battles!)  The "fly-over" states are still being discounted by the big NY/DC and LA areas but the joke is on them: little do they realize that our lives are richer than those who live in the "big cities," which have so little going for them, especially nowadays.  We are the canaries: why would we want to live in the coal mines???  OK, that was a bit off topic.  Back on track!

At any rate, it's been rough getting used to all the new symptoms, many of which I've NOT read about anywhere, which are a result of my hypothyroidism.   Being a person who infamously doesn't remember what all goes wrong with me throughout the day or weeks, it's kind of hard to notice all the strange little problems that go wrong for a CFIDS/ME and fibromyalger combined with hypothyroidism.  It's not until something knocks me over the head that I start to realize, "hey! THAT"S something new!" and look at poor hubby and say, "why didn't you mention that?" or worse "Oh, you think EVERYTHING is a problems because of the hypothyroidism!!!"  Can hubby win: OF COURSE NOT!!!!  It would be silly to even expect him to get a break!  My suffering is his suffering, whether he wants it or not!

So which are the problems I've had the most difficulty with?  I know I will miss a lot of them but I'm here to let you know some of the ones that REALLY are getting to me.

• Migraines out the wazoo.  I mean my migraine arsenal is not even touching those suckers.  I've given up on most of the migraine meds because, frankly, why poison my system with a medication that's not going to work?

• My "body migraines" are also out the wazoo and I've pretty much gotten used to the pain and no help.  Bummer as they were also helped by some of the meds I had in my arsenal.  Nothing's helping now.

I've been told by one of my doctors to drink more water - that being dehyrated can bring on the migraines.  Guess what!  There isn't enough water to hydrate me.  I am drinking so much water that I feel nauseated (and do I really want to add more nausea to the mix?) and am still having migraines and body migraines.  Some times there's just no winning!

• Nausea: I certainly didn't have a problem with this until the whole hypothyroidism started in, around the time I flew to Malaysia.  I have a feeling that the whole hypothyroidism was a result of the trip: it was just one strain too many for the body.  

• Diet: I also think that Malaysia may have also added to the whole hypothyroidism because I have never done well with sugar and they eat an awful lot of fruit there.  I finally got to the point that if I saw another fruit platter (served with everything you order) I thought that I would heave - quite the trick if you don't have a gag reflex!  And I need animal protein: a lot!  Sorry, but my DNA is Slavic through and through, my ancestors were in the same part of the Ukraine as far back as can be remembered and we ate MEAT!   Don't give me the protein "legumes."  That just makes things worse.  Don't give me the "Mediterranean Diet!"   My ancestors never ate anything remotely Mediterranean.  They ate MEAT!   OK, the fish and no dairy - my ancestors invented the concept of eating vegan - we endure it for the Big Lent before Easter, the smaller Lent before Christmas and a few other minor lents that are scattered around, but once those lents were over, we are hardcore eaters of potatoes and meat.  Herring, thank you very much, is for lent.  Period.  Sugar was honey and little of it at that, none during the lents.  We got our sugar from beets, thank you very much.   So, while hubby needs and calls his spaghetti with red "gravy," "Italian penicillin," I call potatoes and meat "Russian/Ukie penicillin."  Yes, I have some throw-back Mongol blood in me, mixed with Viking blood, but I think they ate their meat too.  So Malaysia was very tough on me diet-wise. 

• I didn't mention this before, but enough time has gone by that I can't stand not mentioning what really happened as a result of O'Hare International Airport in Chicago - twice directly contributing to the mess that helped start me get into this mess, when it made me stay overnight in a hotel and did not:

1. reroute me at least to San Francisco, or a west coast city, getting me closer to my final destination; 
2. did not allow me access to my HGH in the luggage overnight and
3. added yet another leg to the journey, making me arrive a day and a half late to KL after I had paid for a business class ticket in cash (no rewards!) just in order to get decent service.  
4. Then on the way back, again, Chicago was a mess: after a lot of very nice personnel and some lying personnel, which ultimately dumped me into "steerage" from Chicago to Pitt, whereupon landing
5. my cane almost hit my head because the flight attendant put it in the overhead compartment in a way which guaranteed it flying out when the overhead bin was opened (I'd tried to warn him but I was already on their poop list because I pointed out that I was supposed to be in business class and they wouldn't believe me until someone finally looked up the codes and whoops!  Mistake made.  So sorry, but you don't mind - NO, of course I didn't mind, I love throwing away money I don't have and paying 4 times the steerage rate just to sit in steerage!)  A blind woman was sitting one seat away from me - whom I didn't notice because I was THAT sick (behind in my meds because of plane delays, etc.) - and my cane only missed hitting us because we both instinctively jumped when we heard the "whoosh" of the cane coming down. 
6. However, the woman who opened the over-head bin was so startled by the flying cane that she jumped back enough to get a huge momentum going with her VERY heavy bag and hit me along the shoulder and neck area as if I were a ball and her bag were a bat, and then I was hit by various women and their luggage as they came down and kept banging my shoulder/neck/head because they all tried to carry 4 pieces of luggage down very narrow aisles in order to not have to pay for the extra fees for too much check-in luggage.  
7. When I then had the "audacity" to make a complaint about being hit and also about being put into "steerage" that meant that the fire department, paramedics, security, police (with their guns proudly displayed), representatives of the airport (PR and lawyers) and the airlines (PR and lawyers) all descended and tried to get  me to sign a waiver that I was not hurt: were they kidding me???? 
8. I finally called them on it and asked if it was necessary to have guns out when I was obviously not a terrorist but a injured woman in a wheelchair and were the lawyers necessary since I would NOT be signing any statements until my husband arrived and could you please take off the blood pressure cuff because if you look, you'll see my hand has gone purple, and it's my very obviously "crippled hand/arm" and you are definitely too stupid to get a reading off of me (I just thought those last words...I DO know when to stop!)  This was just the beginning of the fiasco which lasted for well over two hours.  Ah yes... don't fly those friendly skies if at all possible.  Even business class gets treated like cattle and if you're in a wheelchair, forgetaboutit!  You aren't even human!  Fact of life!

• My fatigue is worse than ever, which is something I never thought I would ever write or say again: after all, how in the world could I be more "tired" than I was when my body stopped making Human Growth Hormone (HGH) and in the end I was carried out of my daughter's college graduation, just as the graduates were coming in through the doors to their seats?  Later, I ended up falling asleep in the car ride home (8 plus hours) eating something and falling asleep and chocking on my food (oh yeah, that was a fun ride) and having to be hospitalized a day after reaching home for such disgusting things that even I won't go there, all because I was so far gone and everyone was trying to cut through the red tape to get me my HGH in order for me to not die...fun  memories (not!)  Truly, it's a miracle that any of my kids still talk to me!

• My brain is too tired to work.  I'll watch a show with hubby and I've noticed that my brain turns off for a second or two, going who know where and I've lost the plot of the story.  This happens to me several times during each show and were I not trying to distract myself from my "uncontrollable" pain and way beyond the misery-inducing fatigue, I wouldn't be watching at all.  Thank God for DVR's!  

• I'm hungry, I'm not hungry.  Oh, I don't want to eat.  Looking at food just makes me nauseated for the first time in my life.  Thinking of food makes me nauseated.  But I am HUNGRY!  I eat a bit, stop and give back the bowl.  This from a person who finds it impossible NOT to finish everything on her plate.  This is from a person with an iron belly, the only part of me that I could rely on to always work!

• This will sound so vain, but my skin has NO elasticity to it.  My body looks like that of an 80-year old!  This is NOT supposed to happen with my genes and is not acceptable.

• The sweats and chills are in a league of their own: in their own Hall of Fame division.  I thought I had it bad before?  This is ridiculous.  And with drinking all that water, the runs to the bathroom alone are wearing me out.  Is there an Olympian event for CFIDS/CFS/ME and fibromyalgia and drinking water and then running?  Should be. 

However, on the plus side: 

• Maybe the hair and eyebrows that I'd worked on for so long with the Rogaine and other products, which was all unraveled by the hypothyroidism, will start coming back in now that the thyroid is up to the right level!  (And maybe I'm jinxing myself?)

• My frozen ankles, tied in with the neuropathy, are starting to flex again!  This was a first!  I was shuffling along these last few months and couldn't for the life of me figure out why my ankles wouldn't bend.  Looks like it WAS indeed tied into the thyroid problem.  Let's hope so!  

• My hoarse voice tells me that "whoops! You've not taken your thyroid med."  I've found an easy solution!   However, I still can't get the coughing under control at times.

And this is the reason that I feel as if I swallowed a pumpkin, whole.  My hoarse voice, my nausea, my hunger, my being too full, the skin that's no longer elastic...need I go on?

Yep, CFIDS/ME/fibro's a bi-atch.    

In the meanwhile, I hope everyone's feeling their best, only much, much better.  Ciao and paka!