About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, May 31, 2013

Friday Tidbits: A Reading List

Shamelessly giving my fellow summer camper, Vladimir Alexandrov, a shout out for his recently published book, The Black Russian

A found treasure: very beaten up, falling apart and in tatters but much loved, as much as a childhood teddy bear.

I've long wanted to do something with books on my blog. Yes, reading is difficult when you have so many "conditions," but we also have to keep in mind that the "use it or lose it" principle still applies to us as well.I'm sure we all know that we must read, for many reason: time goes by more quickly when you're down deep in book world; reading gives you the ability to travel the world. (Cliche but true nonetheless?)  Yet how do we get our minds to get around the barrier, the realism that we have to keep in mind: the naughty CFIDS/ME/CFS, fibromyalgia, severe insomnia, fibro-brain and those forsaken migraines which try to foil us at every turn!?? It's short-term memory: the pits. It's concentration: long gone. 

I'm been procrastinating - but of course!  Actually, I've not been anywhere close to taking on the chore of organizing books, working up the energy in order to climb up and down chairs to retrieving books (because a ladder would be too safe?), then washing down the shelves and climbing on a chair again in order to rearrange said books.  You get the pictures.  However, I'm not complaining.  Honestly!  Truly!

So I've lifted a few books I'd liked when I first read them. Then I tried to put them into categories depending on your ability and if you can comprehend anything you've reading on any particular day. I call this the "moody reading."  In the mood for mysteries? You've come to the right place. Chick flick book: I've got a few authors for you.  And so, here we go.

Series, though stand-alones as well.  
  • J.A. Jance: the JP Beaumont series. You can start reading the series at any point but his back story is so good that you'll really like it if you start at the beginning of the series. Don't tell hubs, but I have a crush on him! ;)
  • Harlen Cobin: I can't wait to read his newest, a stand-alone. 
  • Elizabeth George and her Inspector Lynley.  She's amazing. Stellar reviews, a best-selling author.  She too has a new book about to come out. (Yippee, I'm set for a few weeks now!)
  • Charles Todd: a mother and son team. Their series, An Inspector Ian Rutledge mystery, takes place after WW1. I love the novels because he has demons as a result of the war.
Chick Lit: Is this fiction category still going strong?  I'm so behind in my reading, but these are fun and easy to read!
  • Marion Keyes
  • Elinor Lipman: hilariously funny.
  • Jane Green and babyville and Isabel's Bed are both a good way to stay in bed.  Funny. Good!
Historical Fiction
  • The Bronze Horseman by Paullina Simon, a trilogy which makes for a best-seller in Australia. It's a romance surrounded by some pretty heavy stuff: Russia during WW2. Get out the tissues. Very satisfying read.
Contemporary books which I think will, in time, become a classic.
  • Yellow Raft on Blue Water by Michael Dorris about a Naive American finding her way. We read it in book club and everyone loved it.  Please: don't go by my description.
    Good reads:
    • The Kite-Runner by  Khaled Hosseini. Can't wait to get my hands on the newest, And the Mountains Echoed 
    • Thomas H Cook: Red Leaves
    • Jill McGown (Detective Chief Inspector Lloyd & Judy Hill mysteries)
    • Deborah Crombie (the Duncan Kinkaid/Gemma James series)*
    • Jan Burke* (the Irene Kelly series)

    Hopefully, this should get you through the weekend! ;)  What are your favorite books?  I'm hoping there will be a next time with books. I'd love to hear what you'd been reading (even if it's a small thing from People magazine.)  Please let me know what you'd like to "hear" from me.

    As always, hoping all are feeling their very best - only better!  Caio and paka.

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

    *NOTE: In editing this post I inadvertently dropped "the Duncan Kinkaid/Gemma James series" and Jan Burke's name, thus making Deborah Crombie the author of the Irene Kelly series.  I'm so wrong and so sorry: it's Jan Burke who writes the Irene Kelly series.  Fibro-brain strikes again: how truly embarrassing.  Apologies to all.

    Thursday, May 30, 2013

    The Insomnia/Weight Monsters

    What I've lately restrained myself from mentioning is my weight.  It' so very frustrating because about five years ago I took off approximately 50+ pounds and managed to keep it off.  Getting rid of some medications made it easier to lose the weight.

    However, since my hospitalization, one huge contributing factor in my weight gain had been a result of changes in medication, out-of-wack hormones and stress.  How could this have happened?  Oh, but the strangest things happen to those who have CFIDS/CFS/ME and/or fibromyalgia, I think you'll agree. Part of the problem is that my sleep (or lack thereof) has put on the poundage to my bod.  I mean, let's get real: only three hours of sleep in 42 hours simply doesn't cut it.  

    As I've written before, studies have shown that there are two critical hormones (leptin and ghrelin) which the medical community has come to understand, relatively recently, and that's the sleep/weight relationship - the how and why this happens.  Link over to the little purple bit and you'll get a bit of explanation of how these hormones have such powerful effects on us - and the impact when hormones are out of wack.  Have you doubts?  

    "According to the Atlanta School of Sleep Medicine: "Leptin and ghrelin work in a kind of 'checks and balances' system to control feelings of hunger and fullness. Ghrelin, which is produced in the gastrointestinal tract, stimulates appetite, while leptin, produces fat cells, sends a signal to the brain when you are full." ~from this post. 

    Remember then, when the teenager hormones which make a kid crazy, come into full speed ahead?  And we all laugh at how "hormonal " women become once they're pregnant, not to mention the postparnum blues.  With me - as is with many of you out there - things are further complicated by the CFIDS/fibro nightmare. I've got many hormones going against me and one example is: we're now seeing the mess my hypothyroidism alone has cost me.  Furthermore, take into account the mess in terms of other factors that contribute to weight loss and weight gain and you've got yourself a real puzzle.  Part of the problem is that my sleep (or lack thereof) has put on the poundage.

    My medications have been changed quite a bit in the last six weeks and some are those that make you gain weight.  Do you see why I want to get off of those meds as quickly as possible?  Tapering is just taking way too long.  Soon I've be rivaling any overweight walrus. Gloom.  Despair!  (And agony on me... !)  For a laugh, check out the YouTube clip from HeeHaw.

    The pain I experience - be it from body pain or in the form of migraines - has been almost out the wazoo and I'm realizing - yet again - that if pain is not under control you're going to add weight.  It has to be that some primitive part of us believes that eating is indeed the answer to all.  

    I'd lived my very own version of the "Lamaze" principle as far back as I can remember.  I was thrilled to be able to learn this "distraction" method officially because finally I'd get real instruction as to surviving much pain.  I'd be able to endure much pain - which was only fair as I failed Lamaze with my three pregnancies and labors.  Yes, I learned from early childhood how to try to get your mind on anything but the pain.  Wherever I lived, I always had the cleanest floors which sparkled:  mindless work in which to get your brain as far away from the pain as can be.

    And now I've worked myself  into an all-too-common vicious cycle: in order to avoid confronting the pain, we then end up overdoing it. 

    • I've long wanted to do something on what we call "social media" and reading. In taking on the project in my little converted room with 1/4 of books in the house, a wonderful thing happened.  I found one of my notebooks in which I kept a list of each book I've read over a few years.  The notebook was tattered - but then so am I!
    • Going through that notebook and seeing the book titles I was able to remember what was going on in my life at the time.  It was almost easier to go back in time with book titles than with aromatherapy essential oil (which have yet to reach my house).
    • I've meant to start a reading list to this blog...
    • Books are all over the house and getting to them, at the moment, is harder than qualifying for the Olympics.  Now that I've found this notebook, however, I've got many valid reasons if my book list doesn't pan out. 

    Yesterday, I tried to ignore my pain by cleaning the little room which holds some of my books. (Yay! It's great that I found books I'd been looking for.)  But today I'm sweating like no tomorrow and running a fever, fighting a migraine and all sort of other goodies.  But it was so worth it.  Few things can compete with clean and nice-looking surroundings.

    It's an absolute must that I return to my own version of  "eating healthy and well."  Through years (decades?) of experimenting, I've found a diet that works for me which not only takes off weight - instead the real bonus?  My migraines go away as long as I'm dedicated to that sort of eating. 

    Goodbye, you nasty pounds - that's about 2.5 stone for our British cousins.  I hope you understand why in my case the extra weight must get lost!

    And as always, I hope that everyone is doing their absolute best - only better.  Ciao and paka.

    (Did you enjoy this post?  Please subscribe to my blog and you'll never miss anything!  It's easy: see the directions on the right hand corner of this page.  And BTW: I'll never sell, share or rent your contact information.  I don't even know where to find it, so it's an absolutely, definitely firm promise!) 

    Wednesday, May 29, 2013

    These Are a Few of My Favorite Things...

    Laughs: going through many old pictures.

    Honestly, it doesn't much to make me happy.  By the time I got to Tuesday/Wednesday night, I was in a good place.  Here are some of the up's and down's, but mostly up's.

    We've been remodeling and redecorating on a grand scale ("grant" in terms of us, not the Rockefellers) since 2009ish - a huge stressor for anyone, much less for those who are already sick.  What brings me down is that I'm too picky and a bit of a perfectionist. (OK, family, laugh to your heart's content about the "bit of a perfectionist.")  And the house is certainly not a "museum," as one my kids described my house, clean and clutter free.  No, dear one, you can't get out of your chores.  

    Anyhoo, one of my biggest stressors is the renovations.  It kills me that because of my CFIDS/ME/CFS, fibromyalgia, migraines, severe insomnia, crushing fatigue and so forth, I can't supervise what happens in my own home.  Instead, I've had to put up with many days and weeks where I couldn't and can't oversee what was being done, to see if the work was up to par. The house had gone downhill tremendously because we had to spend any "discretionary" income/savings on three college educations at once. The construction started in 1997 when the roof had to be fixed for the gazzillionth time and continued through several more roof leaks and, in the process, having to fix the ruined ceilings and walls.  I'm beside myself because it IS my fault that things go at a tortoise's pace and that we can only have work done when hubs is around. (And he's so awful at it, though I must say that I've seen significant improvement!)

    The house is literally falling apart around us.  We're constantly discovering new leaks again with the paint sliding downward, creating balloons in a few areas which then harden into a Plaster of Paris look and feel. 

    Because I took on (too) many chores/projects in the last two days I know there will be a huge price to be paid. Hopefully, I'll have enough energy to get to my doctor's appointment tomorrow and THEN collapse.

    So, what gets my mood feeling fantastic, perhaps breaking into a belly laugh from joy?

    • When I see my makeup area cleared up, cosmetics in one spot/box, sunscreen, blushes in another, out of sight, all products in various boxes, I perk up. I love no clutter -  sayeth the hoarder!  It drives me crazy but I try to focus on the thought that in five years we'll hopefully be done so we can rest.  And realizing that I love my home as it hobbles into the 21st century is joy, though I try not to dwell on how OLD I'll be by then.
    • When I've found a book that I really, really like. It's so uplifting!  And if I can handle the plot it's heaven.  That's quite the achievement for this CFIDS/ME/CFS and fibromyalgia gal.  I'm convinced that my daughter's two cats have better brains than do!
    • When I can follow the plot of a book or even the characters.  (I'm hopeless with characters' names.)  I realize that I still have some sort of brain left...
    • And then there's the beauty of the fresh produce that's coming in, as we hit real  harvest times. Our produce market has fantastic fruits and vegetables all year long but it's most especially wonderful in the spring, going into summer. (Can't wait for the homegrown tomatoes to come in.)
    • Looking out the window and seeing perennials coming up. Enjoying the fresh air: well, as soon as I get the energy to venture outdoors. Hope springs eternal!
    • When I discover new followers on my blog. (Yippee and hint! hint! please subscribe.) 
    • Rearranging my books into categories on book shelves. 
    • Finding books I'd forgotten I had - but hadn't read yet.
    • Red poppy growing with purple irises... gorgeous.

      Looking at my family's and my BFF's family pictures seeing how our kids changed over the years.  The best jackpot is sending great photographs to each other when we discover a picture of an ancestor: great-great grandparents and then we dissect him/her for hours, LONG DISTANCE!  And great belly laughs when we realize that we don't have the same genes!)

      And there you have it.  I certainly hope that everyone's doing their best - only better. Ciao and paka.

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

      Tuesday, May 28, 2013

      When Is Lupus not Lupus? The ANA...

      Systemic Lupus Erythematosus (lupus) has historically been called "the great imitator" within diseases.  And mind you, lupus has earned this title fair and square because it, as many of you know, can affect many different systems of the body which can cause an incredibly varied array of signs and symptoms. (That's a mouthful!)  The screening test for lupus is the antinuclear antibody blood test (ANA) and it's incredibly rare that someone with lupus would have a negative ANA.  However, having a positive ANA does not necessarily mean that you do have lupus.  Pretty confusing?  You betcha.

      I recently interrogated interviewed my rheumy/immunologist and asked him what his pet peeves were - professionally and not the personal kind. (Hahaha: we do have a weird relationship!)  He practically jumped out of his chair without having to think about it.  It was getting too many referrals from doctors who were convinced that their patients with positive ANA's had lupus when indeed they did not.  These patients had chronic pain in joints and muscles, fatigue, and a blood test that suggested they had a connective tissue disease like lupus.  Sounds fair enough.

      However, there are numerous medical conditions that are characterized by pain and fatigue which can cause sufficient stress to confuse the immune system into making an auto-antibody like ANA, albeit in small amounts - certainly too small to cause obvious disease.  Most of these patients had something else and it took a great deal of time, energy and further testing in an effort to explain and to convince them that they did not have lupus - they were just that convinced that they did - and who could blame them?  Getting a positive ANA is just plain scary.  Furthermore, what added stress to the patient believing that lupus was hanging over the their head until the patient's condition was indeed straightened out!

      And so the important point to remember is that the ANA is not just a test that is positive or negative.  There are DEGREES of positivity.  (Please keep in mind that this is all common knowledge in the rheumatology world.)

      The way the test results are reported is in the manner of a ratio which represents how strong the antibody concentration is in the serum (blood without the cells).  For example, an ANA that is positive at a titer of 1:40 is a rather low amount of ANA, which is often found in patients with a variety of diseases, including fibromyalgia.  On the other hand, an ANA with a titer of 1:1,280 is a high titer, one that's often seen in lupus patients.  

      Keep in mind that the pattern of ANA is also important.  There are four different patterns that can be seen under the microscope: homogeneous, speckled, nucleolar and peripheral.  The latter, peripheral, is more consistent with lupus than the others.

      If a patient has a high titer ANA, further studies are typically done to nail down the correct diagnosis.  These often include a double-stranded DNA test and serum complement levels.  Of course, a good physical examination is essential in pointing the way to the most critical blood test to be drawn in order to   differentiate among the likely diagnosis in order to come to a correct diagnosis.

      The bottom line is that a patient might have a positive ANA but that does not necessarily mean that one is dealing with lupus.  It takes a skilled clinician to determine if lupus is present or not, and if not, what is causing the patient's symptoms along with the positive ANA.

      True, lupus IS "the great imitator" but problems such as fibromyalgia and early rheumatoid arthritis (both of which can have positive ANA's) are up-and coming contenders for that title.  How many of you have had low titer positive ANA's, or worried that you might have lupus and it turned out to be something else?  Worse, the positive ANA was not explained at all, or just poo-pooed?

      I hope this helps shed some light on an area that can be very confusing and worrisome.

      In the meanwhile, I hope everyone out there is feeling their best - only better!  Ciao and paka.

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

      Saturday, May 25, 2013

      Aromatherapy: Getting My Act Together...

      American tourist (that's moi, of course) discovering the beauty of essential oils while in England back in the late-1980's...

      "And so I've been putting off something that has been a silly economy and a hugely effective tool in what has been part of my arsenal to seriously fight my severe Chronic Fatigue and Immune Dysfunction Syndrome (unfortunately, AKA "Chronic Fatigue Syndrome") as well as my fibromyalgia."

      Since my traumatic hospitalization, I've been on a mission to reexamine past medications, past diets (as in "way of eating," though losing weight is always an issue), past physical activity that I could/can handle and so forth.  However, the other day it occurred to me that somehow I'd dropped a ball.  (There are, after all, so many balls to juggle.)  Worse, this was a hugely successful ball in my arsenal - for me, I hasten to add. It's the world of essential oils and aromatherapy meeting and treating Chronic Fatigue Syndrome (a less palpable term than CFIDS or ME) and fibromyalgia.  

      I "discovered" aromatherapy quite by accident when going to a contemporary museums, i.e., to British grocery stores, department stores, book stores, drugstores (oh how I love to look at what personal items another country has) and so forth. (Don't you just love the term "contemporary museums"?)  

      As I added the oils to my daily life, eventually I was able to graduate from a wheelchair to walking - not far, mind you, but enough that life was made so much easier.  I could walk in my bedroom area and if, need be, I was able to go down to the kitchen, although basically, the only thing that would come out of it was the newest disaster.  Talk about getting into a bad mood!   

      My sleep (which I consider to be akin to labor although minus the great, miraculous result - a baby!) substantially improved. It was such a downright miracle that good ol' "Miss Irene" in her usual fashion of studying everything about a topic that tickles her/my fancy took it upon herself to learn all she could about aromatherapy - most of which has been forgotten by now.  Fibro-brain strikes again! ;)  But that's what books and the Internet are there for: we can do so much while still in bed.

      Today I should be in a fantastic mood for quite a bit of the day.  (If this family could just stay out of the hospital for a while, I'd be on cloud nine!  Don't ask me where I was Tuesday night!)

      Here are a few truisms about me:
      • on the whole, it really takes so little to make me happy (Goodbye, pain! Please go down some sewer!)
      • I am one of those female "weirdos" (as my middle child would put it) who hates to shop 
      • nine times out of ten, I'll pick out a few basics at one of my "favorite" online stores, but then I am way too exhausted to actually place the order.  My brain is simply too fried.  Pain has its way with me. (Get your mind out of the gutter please, my dears!)
      • there are just too many steps to placing an order.  You know that you have CFIDS/ME/CFS and/or fibro if this truism applies to you as well.  I have to wonder, what happened to my love of shopping, "window" as well as otherwise, which I had before this DD hit me?
      • worse, with my short-term memory problems, my "attention" to how much things cost. My brain that is just soo fatigued once it comes to credit cards, filling out addresses, filling out passwords (searching for a piece of paper or the notebook that has SOME of them) is just more than I can handle.  Yes, I know: tell you something you didn't already know! (But it's validation, no?)
        And so I've been putting off something that has been a silly economy and a hugely effective tool in what has been part of my arsenal to seriously fight my severe Chronic Fatigue and Immune Dysfunction Syndrome (unfortunately aka "Chronic Fatigue Syndrome") as well as my fibromyalgia.  Somehow nature's "gift" of essential oils, which has worked so well in the past, has fallen by the wayside.  

        However, in the midst of writing this post, I finally shopped and then actually bought quite a few essential oils. (See the power of a blog? I'm actually able to cross an item off an old mile-long list for shame!)  I used to be a regular customer and would even foist the oils onto my kids for various things when they were growing up.  LOL: one friend's daughter of about 30 years ago, after not seeing me in ages, asked "are you still using that witchy stuff?"  Out of the mouth of babes.

        AND NOTE: Did I mention that the "company," Aromathyme, from which I most frequently buy my  essential oils is having a sale of 10% though May 27, code word SUMMERTIME? 

        Looks like it's time to bite the bullet and attack the things that essential oils can address. 

        I've long wanted to start a series on essential oils, especially since the first post I wrote about my three most favorite essential oils had such a high readership.

        Four Hours Later:  Oh how I wish I were joking when I say that this post was started well over four hours ago. It's taken me that time alone to go through the web site I was ordering from.  I've picked those oils which were so useful to me in the past.  I've picked a few new ones that look promising. I've taken advantage of the discount and free shipping.  I've picked according to conditions, many which I've discussed (harped?) about for ages: insomnia, mood, clear thinking, memory and so forth.  I'm absolutely thrilled that I'm going back to essential oils.  And I can't wait to get them in the mail as soon as possible. 

        After a bit of experimentation, I'll let you know which are (still) successful.  And I'll let you know how it's going.  

        Teaser: three of the essential oils ordered were ravensara, neroli, ylang ylang.  Heaven.

        In the meantime, I hope all are feeling their best, only better!  Ciao and paka.

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

        Friday, May 24, 2013

        Friday Tidbits: Cymbalta and More...

        A real "tidbits" today!  Glory be, rarely do I do Friday's Tidbits the way I envisioned doing it way back when, but today I think I've managed it!  Short(ish), a bit of randomness ... well you know or wish you knew. And so without further ado, viola the adventures of a person with CFIDS/ME/CFS, fibromyalgia and so many other problems stemming from those core conditions, trying to survive! 

        • A huge thanks to those of you who replied to my post of almost two weeks ago, here, as well as on twitter, even on Facebook.  It's my question regarding how well Cymbalta has or hasn't worked out for you.  I know many find Cymbalta quite helpful but my body appears to be in agreement with those who have had problems with it.  (What a shocker, right?  Just a tad of sarcasm there!)  Despite all the negatives, however, I'm very glad I tried it.  I don't like to leave any stone unturned and though I had high expectations at first, as time went along - or as my body started to awaken and return to its very abnormal "normal" self - pretty awful side effects started to escalate.  I held out as long as I could before getting my docs' OK's to end the Cybalta experiment.  I think that without the validation of my readers as to my "is it or isn't it hurting me?" I'd have held on much longer and that alone would have been a gigantic mistake for me.  So you can see how and why the comments really make a huge difference.  Furthermore, I didn't have to go through the torturous, "did I do the right thing?" Again, thanks, my lovelies! 
        • The up-and-down weather we've had has been wreaking havoc, doing a real number on me - as well as to so many of us.  The "aches and pains" (understatement) and migraines have been doozies but somehow the flowers which pop up so miraculously each spring always seem to make the cruddy weather changes worthwhile.  More corn: almost nothing gives me as much joy as seeing nature at its best as the trees bloom and the perennials do their jobs. (And yes, that means if only we can keep the deer at bay!)
        • I'm thrilled that we finally have the holiday weekend coming up.  Hallelujah!  Hopefully, the weather doesn't get too hot since I'd love to break out the barbecue grill given to hubs by the kids about three or four years ago and which we haven't had a chance to try out as yet.  (Aren't we the go-getters, this family of mine?  Yuk, Yuk, Yuk!  And I think I just jinxed that grill!)
        • It scared me the other day when I discovered that my rheumy/immunologist is very concerned that HGH (adult human growth hormone) deficiency is getting to be an epidemic.  Just about every patient he sees whom he sends on to an endocrinologist comes back from testing having "flunked" the arginine-stimulation test where the patient produces an almost non-existent level. That's scary. To show you how often this happens, when that part of my pituitary stopped functioning, it took almost a year from flunking test to the day that HGH was in my hands.  Today getting the HGH from start to finish takes only a few weeks. It's still highly regulated and still extremely expensive but without it I'd be dead as well as many others would be dead.  I do have to wonder if there's a genetic component to it since other relatives have recently shown a deficiency as well. Exciting time for this field to be hitting its stride.  (And, yes, insurance will cover the precious hormone's cost if you have a true "deficiency," a huge consideration.  It's a very highly abused substance that has made it worse for those of us who really and truly don't get the replacement - without treatment, it is fatal.)
        • Yes, I realize that I've been horrid about posting. I do think that now that I'm off the Cymbalta - and soon I'll be off a few other medications which were added/substituted but which, unfortunately, did nothing to solve any of my medical problems, I'll be better.  However, I'm thrilled to report that as I'm slowly returning to my old regimen of medications that DID work, my head will be screwed on much better than it has been in a while.  Short-term memory is still an iffy proposition.  I'm pleased that memory is returning (though some things will never come back, thank you very much) and that the ways of the computer, as well as blogger, are returning to me as more time goes by.  Also, the pain meds are what they were before, so getting to my computer is now doable again.  Yippee!  And thanks again for the many encouraging words to take it as slow as I needed to, as well as those who wrote me the encouragement which goes so far: that my posts have been missed and that some readers get much out of them.  Whoopie!  (Blush.  Aww shucks, y'all!  More, more!)

        Finally, may those celebrating Memorial Day be safe this holiday weekend.  May you have much laughter, great food, wonderful company and stable weather that's neither too hot nor too cold, nor barametric pressures that go up and down like the proverbial yo-yo.

        And as always, hoping everyone's doing their best - only better!  Ciao and paka! 

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

        Friday, May 17, 2013

        Friday Tidbits: DHEA and HGH

        As a child I had normal human growth hormone...

        In the past, I've described several tests that can help doctors, as well as patients with fibromyalgia and/or Chronic Fatigue Syndrome (CFIDS/ME/CFS), to better understand the medical problems that are all too common, yet may be overlooked.  Some tests, like the sed rate (Erythrocyte Sedimentation Rate), white blood cell count and thyroid hormone levels do not vary with age.  That is, a young adult and an octogenarian would be expected to have levels that fall within a certain range, regardless of age.  However, this isn't true for two very important hormones: DHEA and growth hormone (HGH).  

        DHEA (mentioned before), also known as Dehyrdroepiandrosterone, is a natural hormone that is made by both men and women and is necessary for optimal body function.  It's made in the adrenal glands, which are glands that lay above each kidney.  If a person doesn't have enough DHEA, he/she is more prone to:
        • infection, low energy
        • decreased libido 
        • muscle weakness 
        • poor muscle tone. 
        The highest levels occur, not surprisingly, when a person is between 20 and 30-years of age and the levels decrease as an individual ages.  A graph in the book, DHEA: A Practical Guide by Ray Sahelian, MD illustrates this very clearly. (Unfortunately, the book is out of print so why do I bring it up?  Because rheumatologists, endocrinologists and others who work with these hormones still love it!)  This is important because the DHEA level that is obtained for any given patient must be interpreted in the context of the sex and age of the patient.  

        However, it's easy to misinterpret the DHEA level by referring to the normal range provided by the laboratory. The normal range encompasses the levels of DHEA from healthy individuals of all age groups.  For example, a forty-year-old woman should have a level of about 200 and an 80-year old woman should have a level of about 50.  Both values, i.e., 200 and 50, are in the normal range.  However, if a 40-year-old fibromyalgia and CFS sufferer has a level of 50, it may be in the normal range for the general population but certainly not the right level for the 40-year old.  This is an extremely important point as a patient may be incorrectly reassured that he/she does not have a DHEA problem when in fact the patient is dire need of DHEA supplementation. 

        The same principal holds true for growth hormone.  This is a hormone that's made by the pituitary gland of the brain, typically during deep sleep.  (Ah! Therein lies the rub for the fibro and/or CFS patient: sleep deprivation!)  The highest levels are made by children.  Once they reach adult stature, they still need to produce this hormone, albeit in smaller quantities, in order for wound healing and normal metabolism to occur.  For an adult, the summary phrase for the role it plays might be "helps maintain tissues and organs throughout life."  Dr. Robert Bennett described growth hormone deficiency in fibromyalgia patients as early as 1992 in the journal, Arthritis and Rheumatism.  It is important to understand that a normal hormone secretion for a 40-year old is going to be a lot more than that of an 80-year old.  As in the above example, if a 40-year old has a level appropriate for an 80-year old, that patient has a REAL problem.

        (The role of HGH level production has not been described in CFS/ME patients but many rheumatologists who deal with fibromayalgia patients also see HGH insufficiency in their CFS patients as well.  Mine certainly does.)

         Adult Growth Hormone deficiency can cause the metabolism to slow down, resulting in: 
        • weight gain, particularly around the mid-section
        • decreased stamina
        • altered body composition (more fat, less lean muscle mass)
        • muscle and bone growth (spine and disc erosion may occur)
        • sugar and fat metabolism (slows down)
        • possibly heart function
        • many other unpleasant symptoms (including depression, anxiety, decreased sweating, thermoregulation, changes in memory - processing and attention included, social isolation)
        Again, this deficiency may be overlooked if the test results are misinterpreted.  

        Therefore, if you have fibro or CFS/ME then 
        • have your DHEA level checked
        • have your Growth Hormone level checked by getting a test for its byproduct known as IGF-1 -- insulin dependent growth factor-1, otherwise known as Somatomedin-C 
        • make sure that the tests are interpreted correctly since both tests are dependent on the patient's age.
        If deficiencies are identified and addressed, many symptoms will go away completely or become more manageable.  Believe it or not, DHEA deficiency or growth hormone deficiency are more common than thought and are eminently treatable. 

        I'll address the reimbursement issues in a future post.

        As always, hoping all are doing their best, only better.  Ciao and paka!

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        Wednesday, May 15, 2013

        New Meds AKA Reinventing the Wheel

        Today is the one-month mark of when I had to go into the hospital - a day that will live in infamy for me.  How I dread ANY sort of hospitalizations because you inevitably need a year, at the minimum, to get over the experience.  You have to educate everyone who comes in contact with you about what "Chronic Fatigue Syndrome" is and what fibromyalgia is - several times a day, trying to justify your illness.  Even quantifiable things like gall bladder surgery are questioned as if you WISHED for stones and surgery.  And forget about telling the doctors that you have CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) or even fibromyalgia.  No one's heard of CFIDS and they only know fibromyaglia in the vaguest way: from the Lyrica commercials.

        You're thrown into the inevitable psychiatric wastebasket where more damage is done as you try to explain what your problems are.  How, you wonder, can you explain all of what's going on with you and a 35-plus year history, in a few encounters, especially when you want to yell out "get the idiot psychiatrist away from me!" But that's the price you pay in order to continue getting your medications - you hope!  You inevitably come home from the hospital (or a new doctor) with medications switched around.  You know what the result will be because you were given this newest formula before and were taken off of them because someone inevitably thought that antidepressants were absolutely, POSITIVELY, the wrong medication cocktail.

        Everyone gets in on the action with psychiatrists muscling their way in. They bully. Worse, they try to play tricks on you in order to catch you in what they are sure are lies, lying to you in the first place when they play mind games - or use reverse psychology, or any number of their other techniques which are so obvious that anyone with an IQ of 90 or above can tell.  (And yes, I'm telling you something everyone knows: IQ's of 100 are average so my expectations are quite, quite low.)  Everyone is convinced that what you are describing is all psychological. And are they even really doctors???  Let's just say that were I about to deliver a baby in a stuck elevator, I'd hope that I had a cop with me or even a taxi cab driver, but not a psychiatrist!

        I've been put on Cymbalta (SNRI) this time. The fatigue is crushing, not to mention that I have a few other new "goodies" (my worsened vertigo comes to mind).  So, after being taken off antidepressants for many, many years for the "lessening of pain," by educated neurologists who understand CFIDS and ME and being taken off antidepressants as many times over the years by psychiatrists who aren't even versed in cardiology, I'm completely frustrated.  I know what the results will be.  Desperate to play real doctor, they (psychiatrists) unfortunately feel that they can cure that high cholesterol count when they see blood tests coming back. Eons ago, my cardiologist was so upset by this that he said, "when will they stay with psychiatry and leave cardiac 'problems' alone?"  I'm back on an antidepressant yet again, a new one.  I've been on seemingly "everything" beginning in 1988 with Elavil to Pamelor, to Effexor, Remeron, Wellbutrin (never indicated for anyone with migraines plus putting on at least 30 pounds in a very short time), Prozac, to Zoloft and everything in between. 

        Darn!  I just looked up which other antidepressants I've taken in the past and saw that one of the medications being given to me for my severe, almost fatal insomnia is Desyrel (trazadone).  Oh no!  In their dreams - though, unfortunately, not mine.  I'm not having sleep and, thus, dreams in my life!  We've been this route before, many times.  And that noise you're hearing is me banging my head on the desk! Boom!  Boom!  Boom! 

        When will they learn that my insomnia is caused by damage to the limbic system in my brain? It's much like a faulty switch that you need to jiggle. The medications that help sleep do not help mine.  The switch needs something more powerful - what works for me has not yet been invented.

        I know where this will end but I'm too exhausted and brain-fogged to protest or even ask halfway intelligent questions.  My brain has sustained much damage: I was even tested for brain waves at one point to see if there was any brain activity left since I was in the ICU on a ventilator for so long.  I remember almost nothing. Some things are coming back slowly.

        But I had to laugh yesterday when I heard that once off the ventilator - yet not coming to for too many days - an odd thing happened.  When they were afraid that I was "gone," the nurse was puzzled by my fingers tap, tap, tapping away.  Hubs was asked if I was trying to play the piano.  Good guess, but really, not good enough. "No," hubs supposedly answered.  I was busy typing - writing posts for my blog.  So you see, my lovelies, you were never far from my mind - or what I had back then.

        My question?  (Oh, I have so many I hardly know where to begin but we're going for "short.") Is anyone taking Cymbalta or has anyone taken it in the past?  If you don't mind sharing, what were your experiences with it? In fact, what have YOUR experiences been with antidepressants in general.  Did you get help with your migraines, sleep, pain, fatigue or any of the gazillion problems that we all experience?  I'd love to hear from you.

        As always, I hope everyone is feeling their best, only better (fibro logic never fails!)  Ciao and paka.

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

        Friday, May 10, 2013

        Friday Tidbits: I'm back....

        A thousand pardons to all who worried about me for the last four weeks.  I had a hospitalization which ended up being well over two weeks long with me arriving home a week ago.  Be assured that had I been able to answer earlier, I would have done so.  As it is, I'm trying to now figure out how to post and doing the rest of "all that jazz."
        • I'd also like to thank everyone who was so very kind and inquired about me and to thank those who said prayers for me.  I know they did much good - another one of those pesky understatements I'm so very good at making.  When I could find my email I was quite touched by my friends' emails as well as the twitter messages that came via my email.  Some of you just kept on going each week! That was truly amazing.  Thank you, thank you, thank you!
        • At the moment I'm not ready to talk about what went on with me.  I'm not sure I'll ever really be ready.  Some things just can't be discussed.  I hope everyone can understand and respect that privacy. Nothing nefarious went on.  I just need to adjust to my journey.
        • I also want to wish every mom out there a wonderful Mother's Day.  I'm not sure if I'll be back tomorrow or next week, so in case I don't get back to you before, I wanted to know that that front has been covered.  
        Finally, good luck to all who are going out there on Sunday to celebrate National Fibromyalgia Awareness Day.

        In the meanwhile, hoping all are doing their best, only better.  Ciao and paka.