My Bodycare Supplement Routine

OK, I know it'll never happen in THIS lifetime! But one can dream?

It was back in August that I swore that I'd write a post about a vitamin/supplement routine I'd been on for what seemed like "forever." And yet I've hesitated to write about it. Why?

I suppose my hesitation to endorse this line is because I hate sounding as if I've bought into yet another doctor's line of supplements. I've taken enough of them over the years and have very mixed feelings about the whole issue of doctors selling or endorsing products. I know, call me old-fashioned, but I do remember when doctors couldn't even advertise. Yep, that's the way I like my doctors: unadvertised and without commercial. Furthermore, I HAVE tried various doctor's lines of vitamins and supplements and they've never done me a bit of good, other than to throw away good money.

But about a year ago, I started taking Murad's "Firm and Tone Dietary Supplement" daily packettes.  I'd seen them advertised and turned my back on them until I got to the point where I thought, "I really DO need to start back on a good vitamin and supplement regime."  (Yes, I've started talking to myself: it's a genetic thing!)  

I've done vitamins and supplements over the years in a major way, sorting them into those pill boxes, carefully investigating everyone's opinion, reading all I can get my hands on as to what is good or helpful, especially for the person with CFIDS/ME/CFS and/or fibromyalgia.  At different stages of my life, I've taken up to 50 pills/capsules a day, not including my prescription meds.  I've fine-tuned according to my needs, with supplements such as CoQ10, milk thistle, enzymes and the list goes on and on.  At times I felt as if I were spending my life keeping up with filling those little Sunday-Saturday, 4 times a day compartments pallettes, in plural.  I always felt better, but it was a royal pain in the behind, not to mention awfully time-consuming and expensive.

Somehow I conveniently fell out of the vitamin and supplement habit but after the near-fatal and also long-term damage of the "compartment syndrome surgeries" episode of a year ago, I knew I had to fight back in a major way.  After all, I'd had fluid around all my major organs (abasarka), had renal failure, had come close to pancreatitis (jury is still out on that) and the brown stuff in my urine bag in the hospital was the tissue breaking down and leaving my body (rhabdomyolysis).  It took two blood transfusions to save my life.  

When I finally arrived home, I knew that I needed to start taking care of my body in a serious way.  The plastic surgeon, a gentle, jolly bear of a man, found nothing amusing at all with my situation and since he was a surgeon, had no way of comprehending all the stuff that was going on with me aside from the surgeries he'd performed to save my arm/hand and life.  He flatly told me that he could never understand all the mysterious goings-on with the CFIDS/ME/CFS and fibromyalgia and all THOSE issues.  He just knew that I'd had a close call and could see that somehow I wasn't getting the message that my health and what had transpired was no laughing matter.  Bummer.  I really like to make people laugh, but he was in no laughing mood when he'd see me.  When I joked that he must see this stuff - the acute compartment syndrome, etc. - every day, he looked at me seriously and said, "No, thank God, I do NOT see this sort of thing often.  And you don't have an easy road ahead of you."  Gulp.  Killjoy!

So, I thought I'd slowly go back to taking vitamins and supplements.  I knew I wasn't up for the charts I'd made for all the complex plans I had before of not over-dosing on too much of one thing and not enough of another. Therefore, when I started seeing the Murad line of supplements being touted, I thought, "here we go again. SUCKER!"

Imagine my surprise, when I discovered that they were actually making a difference!  My legs were getting a bit veiny (understatement) since there was so little muscle to hold those veins in place.  My skin tone, which had been problematic only in the upper arm area, was now an issue all over.  It was extremely difficult for me to breathe after all the stress on my heart and lungs. I was bloated but my skin was dehydrated.  As if I hadn't had enough issues, I now had so many more.

I felt like a fool.  I cringe saying that I even tried the program.  If anything, the descriptions all over the box are as silly, blatant and worthy of the best headlines that New York Daily News (famous for its cheesy headlines) could come up with.  It was better than anything that the Kellogg and Battle Creek people from the beginning of the 20th century could come up with when they tried to get Americans to start eating healthy. (We've been a country of unhealthy eaters for much longer than we think!)

After a week or so of taking the Murad supplements, I thought that surely the positive results I was seeing were a figment of my imagination.  It had to be ME being a sucker.  How in the world could my skin actually start firming up in just a few weeks with no exercise to go hand in hand?  How could I be eating less and my appetite be under better control within just a few weeks?  Even the Murad people weren't claiming that I'd want to eat less.

And just as I was telling myself I was a Madison Avenue ad executive's dream come true, I happened upon Caroline Hirons' blog and after reading some of her posts I found that she too was puzzled about the sudden fullness of appetite she was experiencing.  Now, Caroline Hirons is one of those women who has a bunch of credentials as well as street cred when it comes to the beauty world and especially the skincare world.  She's completely irreverent (which I love) but so spot on.  Her blog is one I have on the sidebar as a blog I follow - or at least try to - because anytime I remember to check her blog out, I come away with tons of knowledge or validation I strongly need.

So, when I saw that Caroline Hirons was endorsing Murad, I thought, well, I suppose I'll buy another supply of those boxes of packettes and give it another month's try.

What do they include?

• A multi-vitamin (absolutely essential but I always forget!)
• Connective support complex supplements (now we're talking business!)
• Essential Fatty Acids (which help skin cells attract water)
• Cell Energizers (be still my heart -well, not TOO still!)

Why do I love them?

First, I've made it pretty clear that I'm awful about taking any of my meds in a timely fashion.  I either can't find them (and they're laid out in a dish next to my bed as of 6PM each evening!) or I can't find the little Sunday through Saturday pill box (in yellow so it doesn't blend in with the bed linens) that hold my ONE thyroid pill for the AM.  If I need to go on an antibiotic four times a day, all bets are off.  I can't do ANYTHING every day - other than eat - much less a few times a day, so we're not doing well in the thyroid department. I'm an all or nothing person: either my life is nothing but taking supplements and meds all day and nothing else gets done, or my life is reading/watching TV and no meds or supplements get taken.  I know.  It's time to get over it, but I'm a very OLD dog!  New tricks are hard to learn, and if it hasn't happened in the last four decades, I'll venture to say it'll never happen.

With the Murad "Firm and Tone" ... Ok, I have to stop. Can ANYONE out there say that with a straight face?  I mean, really?  Why not just tell us we can take supplements and our faces will look like Elizabeth Taylor's reincarnated at the height of her beauty?

So, getting back on track (and yes, it took me five minutes to stop laughing enough in order to continue)...

The packettes are divided into four "compartments," two of which you take in the AM and two you take in the PM.  Well, that's never going to happen in my lifetime!  (That's what all the ABOVE stuff was about: to make you understand how hopeless a case I am!)  

The first month I ended up with a bunch of PM's and finally decided that I'll just take both AM and PM supplements in the late afternoon.  I know, you should probably take some before eating, some with a meal, some after a meal.  However, I finally decided that my life is too short to get that straight.  Like I said, it's never going to happen.  So which is best?  No supplements ever or all at some point?   Yes, I think you see my point.  All in one go it is.

The only precautions I do make?  I don't take the supplements around my thyroid AM med taking - whenever that might happen to be because of my sleeping "issues."  I understand that there may be a calcium issue (if it IS indeed an issue: I've yet to talk to my endocrinologist about timing of food, etc.).  I also don't take the supplements close to "bedtime" because one of the PM meds I take is Neurontin.  Neurontin and magnesium cancel each other out.  Other than that, I'm just glad I can take something with a minimum of effort and a minimum of worry.

So, yes, I've been back on the Murad for the last two weeks and they are as great as I remember them.  I'm probably on my fourth or fifth box of them now.  I've gone off of the Murad for periods and then back on - it's one of those "out of sight, out of mind things" with me, as well as "am I imagining this?" and yes, I can definitely see a huge change in my skin tone. 

Just a few of the improvements I've seen thus far, as of my January 1 resolution in terms of weight and all that "nonsense":

• my skin's elasticity has improved (big time!)
•  my sore throat, lymph node problem and mouth sores seem to have improved
•  my posture has unexpectedly improved
•  my muscles have strengthened

That's it so far, and this from a person who never really notices things unless they are drastic and you'd have to be a moron not to notice.  Honestly, I'm truly impossible.

However, yesterday I got off the sofa by my bed without touching the arms of the sofa, just my legs lifting my body up, the way things used to be in the "old days."  It was purely instinctual, not at all premeditated.  And please keep in mind that just a month ago, hubs was having to push me towards the middle of the bed each night, with me howling at him to get his filthy paws off of me - OK, I slightly exaggerate about the "paws" thing.  However, for some odd reason (?), hubs didn't want me falling out of bed yet again.  But I didn't like the manhandling and I was just too weak to be moved from the edge of the bed.

So if for no other reason than marital bliss, I highly recommend this supplement routine. Forget the Madison Avenue bull.  Just consider taking the supplements and see if they work for you!

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

Friday Tidbits: A Chatty Weigh In

I'm sure all these Russians are rushing home to eat. 

We're now into Day #4 of the New Year and since it's time for Friday Tidbits, I have a few odds and ends I'd like to cover regarding weight. (As if my other posts aren't odds and ends already?) So, here we go! 

The focus is a bit of a progress report on a large front today, FOOD (Yay!) and WEIGHT (Boo!). Food is one of my favorite subjects - rivaled perhaps, only by beauty products (YAY!) But as you can see by this cartoon, I'm quite the disciplinarian. 

It was Erma Bombeck who said, "Never eat in excess of your body weight." Some days that sounds fair enough! Other days, not so much!

After gorging on everything and anything on New Year's Eve, after a wonderful meal which hubs made, (and I actually really mean it, not sarcastic for once) I was true to my word and started the year out "right" on New Year's DAY.  Note this was after I finally got to sleep, so technically, I was cheating by eating after midnight but we'll just let that slip by, OK?  I was actually in "hog" heaven as I "pigged" out: how do you like them apples/puns? 

My daughter and I made a radical decision.  In our town it's considered good luck to eat any sort of pork at all with sauerkraut on New Year's Day.  Yes, this pork and sauerkraut will evidently bring you good luck, prosperity, good health - to own Walmart and everything else you could possibly hope for.  (I'd take Saks or Nieman Marcus over Walmart if truth be told but hey, Walmart works for me as well.)

Well, that pork thing hasn't worked out too well for us, as any reader of this blog well knows! Duh!  Since we stopped our old "tradition" and took on the new one, we've had nothing but bad luck, so we decided to go back to our splurge for New Year' Day: beef tenderloin stuffed with lobster with a wine sauce.  Decadent, I know, but it kept everyone (but me) healthy for decades, thus saving us a small fortune in doctor and hospital bills. So, if I've not just  jinxed our family by admitting to this, I'm looking forward to a very successful year. Excuse me as I go "tphoo! tphoo! tphoo!" and as I also knock on wood.  Oh my, it's so weary to be a Russian/Ukie-American: we're such a superstitious lot!

Anyway, we pigged out, or rather *I* pigged out.  Hubs and daughter were having their fun with the tiny bit of champagne, as y'all have seen from the picture of them laughing hysterically (link).  No, not the first picture: silly people that's Colin Firth.  No, not the guy with all the hair, that's President Kennedy!  No, mine is the guy who's getting old, and I say "getting"?  Really?

Oh!  Here's a good one, the reason for the hysterical laughter.  I was trying to convince hubs and my daughter of the merits of Russian pop music - funny to them to begin with, for oh so many reasons.  First, I often get mad because they don't understand Russian.  I know: totally unreasonable for hubs and somewhat unreasonable for daughter.  But often I'll find an incredibly moving section of some lyrics.  The words themselves are beautiful for the sound and then those beautiful words come together synergistically with very nice music and suddenly you have poetry.  

As I was extolling the virtues of one singer, I read from Wiki's Russian site that this singer wanted to be an oceanographer but didn't get accepted to the program.  Then I read/translated to them that the singer's father was a veterinarian of reindeer.  Well, that was the last straw, with Santa jokes, reindeer jokes, Russian jokes galore.  Oh, they were on a roll.  (OK, maybe you needed to be there for that to be funny, plus have yourselves two sips of champagne.)

But to get back to food.  My plan of attack is always that before starting back on "a diet," I DO intentionally pig out beforehand.  My reasoning goes like this: if I eat enough of the forbidden foods, I won't miss them so much once I stop eating these foods.  However, there is a major flaw in this sort of thinking. This doesn't always work out well in the sense that can you imagine how much weight I put on getting ready for a diet that I can't start!  ENORMOUS?  Yeah, enormous body and an ENORMOUS amount of food!  

So what did I binge on?  I thought I'd paraphrase what I wrote on the AMR site when Ruth asked what things we stuffed ourselves with and my response was basically:

...lots of foods that perhaps sounds strange and a bit gross to the West, like Kutya (wheat berries with honey, poppy seeds, nuts, raisins, etc.) made only for Christmas Eve, and a couple of other occasions, with "Vinegret," (a delicious Russian beet/potato salad with a bit of sauerkraut, pickle, onions, carrot, and so forth), herring, "Olivier Salad" (another type of Russian potato salad, synonymous with New Year's Eve: songs are even written about it; we Russians DO love our food), New York cheesecake, lobster with beef tenderloin, shall I go on?  I won't say how many helpings of everything I had. I had better stay virtuous as the belly (and other parts) are doing the Jell-O jig and it would be embarrassing if anyone asked me if I were preggers (I am, let's just say, over 45 - hahahaha, she laughs!). OK. This probably DOES qualify for gross and strange: pickles (from salads) w/ cheesecake. Come to think of it, I did this once while preggers, at a deli across from Lincoln Center in NYC, and grossed out my company. What's wrong with good kosher dill pickles and cheesecake? OH!  And all this was eaten between 10PM and just after midnight....

 Here are some of those bullet points: 

• I've already written about my belief that the first three days of any habit, including or especially dieting, are the hardest and the most dangerous time.  It's so easy for the diet to "not take."  
• It's so hard to stop thinking about food.  
• It's so easy to give into convenience food.  
• I'm into and just past day #3 (yay!) and have been successful in getting back to healthy eating. 
• No sugar, no carbs.  
• I'm hugely into food combining.  

Now one of the reasons I've been on twitter so much lately is because I'm still on my migraine streak and thought that being at the computer would serve two purposes:

• keep me from noticing my migraines too badly, using the old Lamaze theory that to be distracted helps the pain
• sitting in front of the computer will keep me from eating too much.  

My feet may be swollen and my belly has probably increased by about seven inches in the last month or so and it may hurt from the gallbladder surgery, but at least I'm successful thus far in my eating.  

I also have been motivated by the fact that I see my endocrinologist on Wednesday and he may actually want to weigh me - and I don't think I have it in me to stare down his nurse and refuse to be weighed.  My GP's office is used to me.  I tell them my honest weight from home that morning and they write that down.  I'm not sure the endocrinologist will allow himself to be "swayed" by me.  I just have this... PHOBIA about anyone seeing me on the scales or even knowing the number.

Which dovetails into this second point of the day.  I'll be seeing the endocrinologist on Wednesday.  As I already said, I've tried to make up questions for him, as well as writing down a few (hahaha, "few": no one would believe that of me, and rightfully so!) bullet points of the rather long list of out-of-the-ordinary (for me) symptoms and which I can't take any longer.  

• Our family doesn't do nausea and I'm ill-equipped for it.  So, nausea will be addressed as well as the fact that  I'm ravenously starving to death (when it comes to food, I'm a certified foodoholic).  
• And everything tastes terrible, which makes me want to search for the food that will satisfy and I end up eating hubs and myself out of house and home.  THEN I send hubs to the grocery store to start on that as well. 

Hubs says he can't understand the nausea and eating at the same time.  I tell him that he's obviously not a woman.  End of discussion.  Period.

But I'll be in danger on Wednesday.  Whenever I need to leave my bed, it takes so much out of me that I'm super-ravenous and can't stop eating.  My body must use up enormous numbers of calories in any get-readiness and then the outing itself is so tiresome and overwhelming that it just makes my body go wacko.  Then I'm craving carbs like mad, those Slavic genes screaming out for good bread and any kind of potato at all, the more kinds the merrier.  

So, to get back to the endocrinologist, if anyone has any good questions I should ask him, or discuss with him, please let me know.  This is really a field I know very little about.  I know that many with CFIDS, etc. and fibro have thyroid troubles.  Much of the thyroid problem is contributed by stress (as if that's a novel theory!).  So, suggestions away!

In the meantime, I hope everyone's doing their best, only better.  Take care of yourselves in this sudden freezing weather that's finally come our way if you live in a temperate climate.  It's good to be getting rid of the bacteria and viruses that fester if we don't get good cold freezes occasionally, but the price paid is that the sudden temperature changes wreak havoc on our bodies as we await the spring.  So, do take care.  Ciao and paka!

Soon, I hope, soon, soon, soon!

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!

Confession's Good For The Soul?

                 This child will hopefully never have a weight problem: he keeps farmer's hours!


I must confess.  Yesterday I "sinned" and I can't handle holding that secret.  It is making me go bonkers to have allowed anyone at all hear me declaring the definite steps I'll be taking in my conquering, to my best, my CFIDS/ME/fibro/migraines/sleep disorders, etc., to arrive at a bit of a true-blue "not looking too shabby for her age" for my upcoming birthday in October and me not doing it.  As I'm sure half the world knows by now (delusions of grandeur?), I went into a Herxheimer-like reaction after KL.  Things were catching up with me from the compartment syndrome surgeries, not to mention two years of living on the edge with my daughter's sudden illness which stopped our entire family's lives cold as we rallied and fought to keep her going.  And these are just the high points.


We're into year 3 of remodeling (walls going up or down, the house being totally reconfigured), though I see I won't be getting my dream kitchen, even modified, any time soon.  This is a huge set-back because I had remodeled it on paper where I could do a bit of bossing around as I lounged in a semi-family room (thus getting me out of bed!) looking out on a lovely garden (perhaps even going out for a bit now and then) and in the other direction, instructing whomever on cooking and baking.   To me, the kitchen is sacred because it's truly the heart of the home. (Cliché but true!)


But really and truly, I definitely do think that there's something new, majorly wrong with me, that which started affecting me back in November, which, in its own way, started me into a downward spiral.  I'm not being very helpful to my doctors as I don't know how to explain this new malignant feeling, whatever it may be, and really, where does one begin?  But blood work has been ordered as everyone scratches their heads and I can't be more useful in my description, seemingly having run out of all descriptions and besides, working hard on just hanging in there.  Think about it: good thing I was a English lit major - how else could I have supplied so many descriptions over the years?  Well, that mine gave out a while ago. Now the docs are on their own for the most part.


But going back to the confession.  Just as I was FINALLY almost off all sugar ("detoxing" was really and truly hard this time), I ate something I never eat anymore: potato chips!


Now the good news is that afterwards I slept - and well.  The bad news is I ate a huge bag of chips. And y'all just know it didn't stop there!  Ben and Jerry's followed with brownies.  Yuck!  


But I'm officially washing the slate clean and starting anew.  So here are the latest things I'm going to work on because we are talking about a beached whale here!  (Too ill to do much moving, BP perilously low, nothing helping pain, blacking out each time I get up, migraines galore, all senses heightened even more than the usual...you get my drift.)


- So, on the diet front, eating "my healthy way" is just not gelling as well as usual, though I will certainly keep on trying.  I have to.  I need to feel better.  Hubby better get into this but a problem is that just last week he made me a wonderful salmon dinner and I almost barfed.  (Uh...I guess anything that swims is out.)


- After yesterday's post about the hormones and sleep, I must come up with a better sleep plan.  I've been thinking of various ways to work on this (as if I haven't all these decades?) but I hope yesterday's post was a huge shot in the arm, or kick to my be-hind, whichever!  So pep talks to self will commence. ("Haranguing" may be the more accurate word.)


- I need to make up menus - something I've been meaning to do for I have no idea how many years.   This way, instead of going through the whole thing of, "what do you want to eat," and "well, what do you have?" going back and forth for (literally) a couple of hours, we can make a list for the week from the "Irene" menu.  And, strangely enough, food, for the first time ever (other than in November) holds no appeal to me.  I derive no satisfaction from it.  However, I'm still always hungry, something that should have ended a couple of days ago.


- must teach hubby portion control.  (Losing battle!)


- need to take those vitamins religiously (Post coming up soon, I swear!)


- drink more water, especially before a meal. (It's just water, self, and I don't need to climb Mt. Everest to get it, for heaven's sake!)


- a weekly IV nutritional, similar to a Myer's cocktail.


-be more precise and consistent as to the hour I get my HGH shot, etc.


I was struck by the line from yesterday's post where the researcher found that with not enough sleep, no matter how much a "subject" ate, they were never satisfied.  Bingo!   My life in just a few words!  And THIS is precisely why I think sleep and food and their relationship to each other absolutely need more research.


There's not much money for the Big Pharma's regarding CFIDS/ME/fibro.  But there is a HECK of a market out there for insomnia and pain. (Just watch the commercials during the network 6 PM news shows!)


We just need to figure out how to make Big Pharma's realize these things and see the market for profit for these illnesses.  I think then we'll start seeing a huge and quick amount of info coming forth that would help us tremendously in the CFIDS/ME/fibro, insomnia, migraine world, as well as many other diseases or disorders.


What do YOU think?  Any other ideas for helping us put on our most gracious faces?   Because yesterday was not one of my more gracious days and that shames me.


At any rate, hope all are feeling the best they can be, only better!  Here's to a terrific weekend, however and wherever you spend it, with some mighty good sleep!

Finding needles in haystacks while dieting.

Eating my way through England in the late '80's.

If ever any of my three (charming) kids to look at this post, a massive cry would arise, I just know it.  You see, they already think that I'm an eating well/healthy eating crusader, as well as a believer that food will cure all. Well, I'm not - not really.

...Although there IS my constant threat/dream to start a demonstration in front of every supermarket in the US with young women, mothers, grandmothers of the world united, carrying placards that declared that 95% of the food in said stores is dangerous to our health.  Hugely dangerous!  But I'm coming perilously close to digressing, and that's for another post, so on with it!  

I'm always amazed at how much healthier I feel after I've been eating well.  Actually, perhaps not "healthy," but instead how much cruddier I feel after eating "well" for a while, then sneaking in one of my "forbidden" foods and suddenly feeling incredibly worse...migraines, brain fog, huge pain, and the myriad of other symptoms and problems which then come out in spades and/or are intensified.  

I suppose the first time I really and truly noticed this was back in the early '90's.  I'd gone on a diet determined to lose the fat and poundage I'd put on after seeing a CFIDS specialist (one of a few already and one of many to come) who thought regular steroids would be the answer.  I'd made peace with the decision and since I was already bathed, dressed, made up and out of bed, hubby and I decided to stop by a department store on our trip home in order to buy some clothes that would fit me once I put on the inevitable at-the-very-least 20-pound weight gain I have always gotten from just one shot of steroids, as in the occasional bout with poison ivy or other nasty thing deserving steroids.  

Well, to make a long story short, my CFIDS, ME/CFS, fibromyalgia, migraines, insomnia, and so forth, symptoms got no better.  In fact, I would say that they got much worse.  And I did not have a 20-pound gain but a 40-plus pound weight gain.  Putting on all that weigh made it even harder to move around, the pain got much worse.  The migraines were so bad, in fact, that I was in the ER just about every week.  

In those days, the "best" treatment for migraines was a DHE-45 IV drip in the ER which took a couple of hours to administer.  It worked like a charm but was a pain because I have a phobia of needles and a good "stick" is hard to find.  But the ER docs got to the point where they could take one look at me, talk to hubby and immediately see if a quick Demerol shot would work or if I needed the dreaded DHE-45 infusion.  

I thought my migraines would be a cinch to deal with once Imitrex came out, in shot form.  Holy cow, was I ever wrong.  The migraine would go into stratospheric heights and knowing I sounded very crazy I nevertheless couldn't stop screaming from the worsening migraine that the Imitrex induced.  Then after about 6-8 hours, if I were lucky, the migraine would magically go away.  Too often, however, the migraine did not go away and I'd need a second shot, screaming, sweating, shaking, trembling...it was a sight out of "The Exorcist," minus the head turning. 

Back in the late '80's, the migraines had become so bad that my first lumbar puncture was done.  When elevated proteins were found in my spinal fluid, everyone scrambled about getting me scheduled for a CT scan, others were trying to figure out who would be doing a removal of my brain tumor because that's what an elevated protein level in the spinal fluid meant back then, whereas hubby worried how he'd miss his young wife and how he'd manage life with three little children who had no mother.  It was a scary 24 hours until everyone found out that there was, indeed, no tumor in my brain.  

On the other hand, when I was lucid enough to think, I was furious with everyone. I didn't have a diagnosis yet as to what was wrong with me, but I KNEW that something serious was going on.  How was it, I wondered, that the elevated spinal fluid would scare the heck out of doctors one day and not be a sign of anything wrong the next? Come on guys, use the brain God gave you, the logic college taught you, and the physician's training medical school gave you.  There IS some sort of problem.  It's not just a yes or a no!  

But everyone was happy, other than me, of course.  That was the infamous year when I spent more days in the hospital than at home, popping in and out of hospitals as if they were my home away from home.  Hospital dietitians particularly got on my nerves because they kept trying to trick me into diets I'd long ago surmised did not influence my health.  I'm sure there are exceptions to the rule, but one the whole, I've found that most hospital dietitians are the most ignorant group on God's good earth when it comes to food.  Think about hospital food for a moment and you'll understand what I mean.  

At any rate, getting back to the steroid fiasco, I stopped the shots and was determined to lose the 40 pounds I'd put on, not an easy feat.  For some reason, regular weight goes off rather well with determination, but steroid weight gain is almost an impossibility to get off.  It takes me at least a couple of YEARS to budge even 20 pounds.

But I heard about a new diet on one of those evening magazine shows and decided I had nothing to lose but weight, so why not try it?  

It was called "The Monignac Diet," "invented" by a Frenchman who worked in the US for an extended period of time, had a history of extra poundage he wanted to lose, and was horrified by French young ladies who spent time in the US and came home fat.  Nutritionists and dietitians around the world were divided on the efficacy of the diet, most very much against this new-fangled concept of a glycemic index, but given my opinion of nutritionists and dietitians, I thought that was reason enough to try it.  

The diet basically divided meals into ones which were fat/protein or carbs.  Never could the two groups meet. Furthermore, carbs were divided into "good" carbs and "bad" carbs.  There were also some "no-no's," such as sugar, corn products, potatoes (a killer for me since I consider potatoes "Russian/Ukrainian penicillin").  This is all a simplistic explanation, of course.  This was also my first venture into the low-glycemic world.  In fact, Montignac is now, after his death, known as the "father" of the glycemic approach to diet, eating, weight gain/loss, health and so forth.

Well, it was a surprisingly easy diet to stay on.  I lost 20 pounds but then hit a plateau - a plateau I could not for the life of me get myself off of.  

One night, complaining about the darn plateau, observant hubby suddenly said, "you know, you haven't had a migraine since you started that French diet."  I looked at him as if he'd suddenly grown a monstrous second head but I often give him that sort of look.  

"Think about it," he said.  This time he got a dirty look.  One of my hobbies is thinking...was he actually telling me to think when he's always telling me to think LESS???

Suddenly I jumped out of bed and ran to the dresser where we kept all of my migraine meds, including the dreaded needles.  My supply of needles looked full.  I checked the date on the Imitrex - and it was expired.  WAY expired!  I looked at the rest of my migraine arsenal and everything was old. 

This was way too easy.  Hubby said, "I think you may have lost only 20 pounds but more importantly, you lost your migraines too."  That was such a corny statement that he got another, deserved, "look" from me.

Not wanting to leave things well enough alone and being a contrarian, or just a person who likes proof, I looked at him devilishly and said, "I want a burger."  You see, bread, a carb, and beef, fat/protein, mixed together were a definite no-no.  Hubby looked at me as if I were nuts but knew arguing would do no good.  I finally ate my hamburger with extreme relish and got my migraine, in spades.  Too bad I hadn't planned things out: the migraine was one of my better ones and because the meds at home were all expired, a run to the ER was needed.

It took me some time to accept the reality that I had hit a cure for my migraines.  This was really huge.  As a child I got bad headaches but my mom believed that children don't get headaches, they just caused them - in adults!  I learned great coping mechanisms, one of which was washing floors, de-waxing and waxing floors on my hands and knees whenever I had a "headache" coming on.  I didn't even realize I was doing this but always had incredibly sparkling floors. 

All of this denial came to an end, however, when I went blind in one eye for a few days while in my second pregnancy. It was a migraine equivalent seen at times with women who suffer severe migraines.  I argued with my neuro-opthomologist that I don't even get mild headaches when my hubby came out a state of shock and said, "You ALWAYS get headaches!" Was I complaining but not hearing nor registering those complaints? 

After challenging the "French Diet" a few times, I realized that for me, at least, this was one answer to my migraine problem.  I've had good years and bad years as to how well I stick to this way of eating.  At the moment I'm not doing too well because of too many reasons to bore you with at the moment.  

But how incredible was the luck that led us to this "cure"?  Had we not been using needles back then and had Imetrix not intensified my headaches before ridding me of them, the connection might not have been made. Today, with a medication in pill form that works like a charm, I'm not as invested about avoiding the foods and eating patterns that lead to a migraine.  Pop that pill and forget about what harm I may be causing myself due to side-effects not even yet imagined.  However, now that I've put this in writing and told so many about it, perhaps I've finally given myself the push I need to get back on the French diet band wagon.  

Goodbye to my wonderful potatoes, my wonderful Russian/Ukie cure-all for a while.  Perhaps I'll have some mashed ones tonight as a farewell, right before I have a piece of sugar-laden cake for my wonderful daughter's birthday.  It's tough to say goodbye to those "poisons."