Friday Tidbits: "You're a Migraineur!"

One of the kinds of migraines I get.  However the kind I had last yesterday is down below, so annoying that I tried to spare you. The picture might be too much, as the BBC often says.

Yesterday was a bit of a rough day for me: my migraine was not just "bad" but a bit frightening as well. Normally, I have many different types of headaches and migraines, and, given my age, I thought I'd experienced every kind I'd ever have.  I've had migraines as far back as I can remember, experiencing my first doozie when I was five, or just maybe six years old, and  I'd smugly thought there were no other surprises in store for me. Sigh.  Sometimes I marvel at my own stupidity naivete'.

For the first time - that I'd ever noticed, at least - each book page had a fuzziness and light around each word. (It actually looked pretty cool, though I'm not sure how much I'm aging myself if using the word "cool"!) When I closed my eyes, I had three quarter "wreaths" in front of my eyes, with white lights.  I called hubs but when he tried to explain where my migraine med is, I couldn't find it.  For me, this is one of the most frustrating parts of getting a migraine: that my mind can't concentrate well enough to see the bottle, even if it's right in front of my face.  Normally, we have a designated space where the migraine meds are kept but since I've moved back into my redone bed & bath, we can't seem to find the right spot for the so-important pain killers. It's easy enough to find regular medications. However, when you're in pain, it becomes a Olympian feat. (Oh, thanks, readers!  In complaining to you, I think I may have just thought of the right spot - if it's not too far. Hmmmm.)

Hubs was able to run home in the middle of his day and give me the med.  By now I was having psychedelic coloring with my eyes closed.  The room was starting to move and nausea was moving in, way too fast.  Yet strangely, the pain was not that bad.

While speaking to my rheumy on the phone - and I can't remember what led to this remark - rheumy said, "but Irene, you're a migraineur!"

Stop the world.  What?  I'm what?  No, I'm not a "migraineur."  Yes, I do get migraines in my head - and I get severe body migraines as well.  Yes, to keep the migraines under control, I try to watch my diet and have figured out which foods I can have, which not.  I try not to get (too) stressed over things.  (OK, family, stop laughing!)  I try to be good to my body.  And just as I am extremely aware, each and every moment of the day, as to what may keep me from sleeping, so too am I aware of all thing migraine-inducing, from the way the lighting is placed in a room, realizing, too, that the sun and I have a bad relationship, to watching out for glares, living in a pretty dark room and so forth.

I'm trying to figure out what it is that shocked me when I was called a "migraineur."  Was it because though migraines can and are too often 9's, bordering on 10s, driving two neurologists to do two spinal taps (link), they aren't as bad as too many of the overwhelming symptoms of ME/CFS and fibromyalgia?  The whole weakness bit is just about so much worse than anything I've ever experienced. And I've become pretty good at blocking all but the worst migraines out of my mind. Furthermore, I think I can do this PRECISELY because I started getting migraines in early childhood, due to that "window of opportunity" when learning survival skills is constant and mandatory, as dictated by Mother Nature.

Back when I was preggers with my second child, I suddenly went blind in one eye.  A neuro-ophthalmologist declared that I suffered from severe migraines, the blindness a migraine-equivalent occasionally seen in pregnant women. I argued that I didn't get headaches of any sort until hubs came out his shock and said, "you get them all the time!"  I would, evidently, complain I had a headache but not realize it or hear it (much like muttering to yourself) and would start washing floors in order to "outwork" the pain.  One can liken this survival technique as my way of discovering the Lamaz principle, distraction.

When I got my pancreatitis back in September (link), I was puzzled.  My info sheet given to me by the ER stated there are two reasons for pancreatitis.  The biggest reason by far (some say even up to 90%) is alcohol. However, I don't drink at all, not even champagne on New Years, only a sparking cider of some sort to bring in the New Year. (I think I'm going to change that back to champagne: our last few years have been so awful that lots of things will be changed: more on this later!)  

The other reason found in medical literature and told me by my rheumy was due to gallbladder. Problem with that is my gallbladder was taken out over a year ago.

The third reason, not stated, is that pancreatitis can result from certain medications.  I'd been in a very bad place in regards to migraines, almost living on migraine meds, coping with a lot of stresses, as well as allowing myself to eat foods I know eventually put me in migraine-h*ll.  One doctor says it may have been all those migraine meds that contributed (ok, maybe caused) the pancreatitis. On the other hand, it could have been another med.Yes, I get migraines, but I'm not sure why I feel like a fraud if I'm labeled, "migraineur"? The migraine med didn't help much so I'm pretty sure I may end up eliminating this med from my go-to's, since it didn't work as well as it should have. 

On the other hand, it did eliminate the body migraine, the nausea & most of dizziness as well as the colors I had floating around words on a page or what I saw when closing my eyes. However, everything is blurred now and my head feels as if a truck hit it, with eyes that feel as I'd been crying for days. And can someone take the vise off my head? On the other hand (again), this WAS a new sort of headache, with little pain in the scope of things, so perhaps this med is one I should try if/when I get a more typical migraine.

Good Grief! If I'm putting all this thought and energy into my migraines: and discussing them in such length; noting the newest kind as well as describing various experiences in my past; working so actively to prevent them; having had much testing in the forms of CT scans, MRIs, spect scan, x-rays and "things" I've thankfully forgotten, in addition to not thinking very clearly as I try to ignore this mess going on in my head as I write - well take a deep breath - maybe that DOES make me a migraineur.

As always, I hope everyone's doing their very best - only better!  Happy and safe weekend, everyone!  Ciao and paka.


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I'll take this down if it's too annoying.  Let me know.  I was just amazed to discover something so close to what I was seeing.  Normally it's stars, fire works, and so forth.

Christmas: CFIDS/Fibro/Redneck Style

This year, it seems I'm in a "redneck" mood for thanks.  Having lived in our town for over 30 years, I use the word affectionately, not to mention that in some ways, our entire family has become at the very least a "country" family, if not a "redneck" one.  ("Redneck," "country"; you say potato, I say potato!)

Each year, one way or another, there's a new Christmas album underneath my tree; they've ranged from Elvis to Andrea Bochelli.  It's my daughter who notices which song or singer I'd been attracted to each Christmas season.  

Now, as a full-fledged CFIDS/ME/CFS and fibro-mite, I'm rather slow on the uptake.  It was about the 15th time that my daughter had gifted me a Christmas album that I realized the Christmas album had become a tradition between the two of us.  (OK, I may exaggerate: I might have caught on at about year 10!)  Not noticing this for so long, however, may pretty much land me smack into the middle of the "bad mom" category since at one time, one of her Facebook quotes was, "A day without music is like a night without the stars." Or something like that.  Techno-genius I'm not and I can't find the quote now - of course. <shrug>

Like most families, we have our little, as well as silly, as well as big, Christmas traditions. OK, so perhaps other families don't usually include a mom on Christmas morning who couldn't manage a bath in the last few days, nor get her makeup or hair done - a crying shame because it's REALLY needed - and it's why this mom stays out of most Christmas photos.  Like many families, if not most, we have our bumps that go on during the night and I don't mean Santa landing in the chimney. (Was that comment just a bit too corny?)  But we have great traditions as well - or so I try to tell myself.  (Hang in here, folks. There is a story and a point here, a picture of our life as well as the ME/CFS and fibro factor!  And ER visits! Promise!  Read on, my brave lovelies!) 

For the last 28 years - or thereabouts - we've bought our Christmas trees from a certain tree farm run by "Granma". (Here comes a CFS/fibro tip: try to get your tree delivered if you can't handle going out.)  Granma had to have been 80 years old when we first "discovered" her.  Or perhaps we felt as if she were 80 since hubs and I were still in our early 30's.  When the kids were growing up - and even in adulthood when they've been around - we'd all head out in August or September and go up and down the hills looking for a suitable Christmas tree, always a blue spruce.

When the perfect tree was found - and yes, after more than a few arguments along the way, none of which were ever tree-related - we'd tag it with our name and come December 10 (our preferred date) the tree would be delivered to our house, already mounted in the stand.  Understand the "we" part started to not include me after a few years, but that's OK since I'm not one who has ever loved walking up hills and down into dales. (Flashbacks of my many summers in 1-2 months-long camps and way too many hikes!  Help!  Agh!)  As for the years when we couldn't do the tree hunt?  Well, granma had about 10-years worth of trees she had a eye on for our family. 

This year, however, insurance got the best of Granma's place and they couldn't deliver their trees to their customers' homes.  So hubs and daughter had to get the tree themselves, driving up the steep hills during a snow fall.  Hearing them try to lug the thing into the house, as well as "place" it, made me "run" back to my bat cave: I really wasn't up for the keystone cops routine.  And my hands were itching: oh boy...I sooo wanted to do the job but couldn't.  (Lordy!  I so hope that this getting-of-Christmas-trees-on-our-own doesn't become a tradition!  We're too old to start now.) 

The TV stations started revving up for the holidays and (too) many specials were on, when not too long ago the TV happened to be turned to the Country Music Awards. I semi-heard a funny song as it was ending and hit "record" and then ignored the show, going alone with whatever I was doing.  But a few days later I found the guys singing the song who'd caught my ear. I'd never heard of "Duck Dynasty" and still have not learned anything about them.... Pretend there's a transition here, please.  My brain is blanking!

I find the hardest part of Christmas to be not just that I can't cook and bake like I used to. Like so many of you, I literally cooked and baked for at least a week before Christmas Eve (Russian/Ukie foods and traditions) and Christmas Day (American/Catholic/West/Italian foods and traditions) in order to get everything ready for those two dinners.  But what's been harder to take?  Gone are the days when the entire family would be home for Christmas. 

Somehow we always "officially" started our Christmas season by stringing the lights to Elvis' Christmas album. And it's always Elvis, to the point where I've forgotten how many times we've had to replace the album because of wear.  By the time "Blue Christmas" and "I'll Be Home For Christmas" came on, I'd start to dance with the boys, camping it up, no matter how much they "hated" it.  And trust me, there were years where they hated it alright, but played along.  The one year, however, I forgot to put on the album and started stringing lights without first dancing with the boys?  They were outraged and hurt. Typical, right?

But getting back to this year and being in some sort of redneck karma, debt and gratitude.  With ER visit #1 of these last couple months, I had to drive myself to the hospital.  Getting out of the car was tricky not only because I had the mother of migraines, but the parking space was too small, combined with lugging out my bag and cane.  I stumbled against the trunk of the car and was righting myself when a guy came running over, yelling to his two women friends that "this nyice laady fell!  We need a wheelchair!"  I kept trying to reassure him that I was OK, but he insisted on half-carrying me to the ER, demanding a wheelchair and that I be seen immediately.  No one was going to argue with my knight-in-redneck armor.  Thank God!

Then with the ER visit #3 and the pancreatitis, I had to take a cab home.

Understand, you really don't want to take a cab in our town and, to be truthful, I was nervous.  After all, the one time I'd taken a cab, it felt like the tiny circus car where clown after clown keeps getting out and the audience wonders how so many people can fit in the tiny car.  Well, I was the 6th person in that cab - yes, that's sixth - and the only one not smoking! 

Hallelujah, this time I lucked out in being solo in the cab.  And the best part was that my cabbie was so nice, especially appreciated after the treatment by the ER staff.  (See the unbelievable "attitude/bully," which, hard to believe, is not the pancreatitis one.)  He was just so mellow and yet got the message across that if I wanted to talk, that was OK, if I wanted silence, that was OK as well.  That day I really needed someone who thought I was, sick, sane and not a drug seeker.  (Because really, they were the insane ones, practically accusing me of being a drug seeker when my blood work clearly showed pancreatitis!)  When I later told my daughter about the "knight" and how the man had practically carried me into the ER, she said, "Yep, mom.  Rednecks are the best!  They're REAL!"  Real nice and mannered in my book, which goes a long way.  

And so my Christmas song for the year: Hairy Christmas.  (I think that those on mobile devices need to hit the highlighted link to see the video.)

"So hunt you down a Christmas tree/
Thank God mama's cooking is free/
Round up your redneck family...."

How perfect?  A hunted-down Christmas tree is a tradition.  OK, so it's daddy's cooking that's free these days, but I'm in there somewhere too - or so I hope.  And we're going to round up as many redneck family members as possible - hoping that I can manage Christmas at the dining room table and not in my bed....all while hoping that next Christmas we'll have more Redneck family members to be rounded up. <wink, wink!>  In the meanwhile, enjoy my Christmas-song-for-this-year performance! 

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


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Friday Tidbits: My Three Daily Shots

Needles: I thoroughly hate them - I have a true phobia. I think that the Guy Upstairs has a very funny sense of humor because I need three shots daily. Or, perhaps, I lived a very strange sort of existence in a former life and my punishment is having to get so many shots in this lifetime.

People seem to be curious about medications our fellow sick ones take and I'm private about some things, yet share others.  A lot also has to do with how much I think others might want to hear, preferring not to bore people to death.  But it's Friday, I'm feeling cruddy with all that's going on, still with the nausea, recovering somewhat with the swelling and bloating, pain, you-know-the-drill, much of it still where I was last week.  I've had a few other problems that are getting to me but I'm still sitting on the fence as to whether anyone would want to hear about it or not.  Other things are driving me nuts: I'm trying to hold out and see if there is any rhyme or reason - hint: rashes and hives amongst other annoyances.

Hubs is out of town for a long weekend, I'm forced to give myself my own shots and so I finally decided I'd "go there" - that is, tell you about the three shots I dread so much that everyone but in the family but myself knows how to administer.  I should say that I'm so bad about needles that back in the day when the only way to get over a migraine - besides waiting it out - was a shot, my 13-years old daughter came to her dad and said, "it's about time you teach me how to give mom her migraine shot. You're not always around to do it, you know."  Or words to that effect.  That summer, bossy daughter and I were going to fly to Oxford and she wanted to make sure I was covered.  Have I mentioned lately that the girl's got guts?

Luckily, needles are not the only way to go in order to treat migraines any longer.  Those little pills are such a convenience!  I'm so bad that I prefer going through life with migraines than have a shot - or the occasional DHE-45 IV given over an extended period of time in the ER with hit-and-miss results.  See how ancient I am? It's as if I lived in the age before antibiotics were invented!  Not quite, but almost.

But the Guy Upstairs still has His joke with me on a daily basis with:

• Vitamin B-12  Yes, I could go with the pill form, even the sublingual form, but that didn't work for me.  Despite getting B-12 the way the rest of us get it, back in 1997 my test results showed that suddenly I was extremely deficient in B-12.  In fact, I was low despite the IV nutritionals I was getting weekly at the holistic clinic I went to over two hours away by car, each week for a year.  The funny thing - not haha but strange - is that it takes two years for your body to make up the deficiency. Therefore, though the tests may come back with your level of B-12 - registering in normal amounts - and though the blood tests may reassure you, guess what!  Your cellular level of B-12 may still be low.  I now get a daily shot of B-12 and do get tested periodically to make sure that my levels are in the normal range, not too high, not too low.

• Pitocin   I'm sure many out there with Chronic Fatigue and Immune Dysfunction Syndrome (CFS/ME), fibromyalgia and many other autoimmune illnesses have problems with vision changing day-to-day and even hour-to-hour.  But it's not a vision problem, per se.  Instead, it's the brain not able to interpret what the eyes see.  This makes sense to me (my case, that is) because of two factors. On my worst days, my vision is kaput. I can't get anything to focus right.  On my better days, my vision is not annoying, although unlike Goldilocks, it's never just right. 

Which leads me into a smooth transition. The second reason I get a daily pitocin shot is because "some" believe that it may be a pituitary problem. It's a bit much to go into today, so I'll address this in a future posting, soon.  It's a truly amazing thing that we've discovered, so it perhaps deserves its own post!  (Am I getting good at ya'll anticipating a post?  I'm tryin'!)

• HGH (Human Growth Hormone)  I think I've gone on and on about this, more than most ever want to hear.  These  HGH posts are found here (weight gain),  here (impact on fibromyalgia) and here (hormonal impact/levels).  But as I've mentioned once before, my rheumy is really worried that the HGH deficiencies he's seeing in his practice are almost epidemic.  (I'm adding the "almost," and underplaying his concern and alarm.)

 

And off we go into another weekend!  As always, I hope everyone's doing their very best, only better!  Wishing you a wonderful weekend.  Ciao and paka! 


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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.


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Friday Tidbits: Three Medical Quirks

Experiencing motion sickness but already suffering migraines...

It's Friday Tidbits time, the day of the week when I can make a few points without needing transitions between topics.  OK: I know that this differs very little from my usual way of writing, but I do like just a few teeny-tiny delusions in my life.  We'll pretend that I always have beautiful transitions.  Fine: end of ramble and on with the subjects at hand.  

I have three medical quirks you might not have noticed before which I found fascinating.  These I bring to you from what I've learned from my rheumy/immunologist over the years.  I'm not sure what we can actually DO with them, but hey!  That's our lives (those with CFIDS/ME/CFS and/or fibromyalgia) on any day with anything, so why start making too much sense now?

And so, on with: Did you know that...

• You can get reptilian/lizard-like skin from fever and swelling?   Ha!  This is a good observation and tidbit, no?  (Yes!) When I got the cellulitis in my hands and left foot, my hands swelled up enormously, with extremely tight skin and tremendous hotness and redness to them.  After the high dosage of antibiotics finally kicked in, the swelling, redness and hotness started to come down, but my hands had a very strange texture to them.  I kept looking at my hands and thinking, "what the heck is going on here?"  (You DO realize that you're getting the cleaned up version of what actually went through said mind?)  My hands didn't look chapped, they didn't get a rash and they weren't dehydrated either.  They just looked sort of scaly, almost reptilian or lizard-like.  (This "reptilian/lizard-like" description is uniquely mine, I believe, not found in medical journals, though there is no doubt about the phenomenon.)

I discovered that a good description of what happened is "local inflammation that creates a glove of dead skin."  The top layer of skin dies and then flakes off.  When the top layer of your skin is no longer alive, but hasn't yet flaked off, it gets rough.  Oh my, "rough"?   Well, that's just putting it mildly.  But, now, a few weeks later, my hands have a wonderfully soft texture!  Think about it: I underwent a natural exfoliation process!  It's not the IDEAL way of going about doing one, but the end result WAS gorgeous. (I'm TRYING to be positive here, y'all!)

• That itchiness can be associated with a viral illness such as the flu?  No one knows why this happens.  It's called "pruritis," which is just a fancy word for "itching."  There's a spectrum to pruritis as there's a spectrum in almost everything.  Some cases are simply due to dry skin but others have more serious causes.  It's not an allergy.  It's just a non-specific reaction that may be due to a toxin or a virus, but again, no one is exactly sure why this happens.  (Oh, we can talk unmyelinated C-fibers, nociceptors, histamines and all sorts of medical theories till we're blue in the face but it all boils down to "No one really knows, folks!" and  besides, they are not the point.)   

The itching can be as benign as seen with dry skin or even pregnancy.  However, it can also be a sign of serious illnesses and/or conditions.  These include liver disease/liver failure, kidney failure or when other organs malfunction, such as the thyroid gland.  I have this symptom a lot and am happy to finally have an explanation for it since I always knew it wasn't simply due to dry skin nor imaginary.  (Remember: I have hypothyroidism but there's more than just one candidate for what causes this with my body.)   Furthermore, this is an itchiness that is definitely "invisible": it's not a rash or hives, just itchiness so bad that you want to get out of your skin.  So, next time you or I are in a hospital and complain of itchiness that's driving us nuts and the nurse gives us a disbelieving fish eye, we can be prepared!  I can tell you that when I've had this invisible itchiness, rashes and hives all at the same time, it was the invisible itchiness that was the worst - by far. 

• Children destined to become migraine sufferers have a warning of what is to come later in life by suffering motion sickness accompanied by vomiting.   I can vouch for that!  I'd give my camp counselors a desperate look and was immediately excused to get out of church QUICK: all it took was barfing a couple of times as a 5 year old and I was set for 13 summers!  This is the fate of the migraineur: he/she is sensitive to stimuli, be it to light, sounds and smells, a "state of being" for one who is extremely sensitive to these stimuli, even when without a "headache."  This certainly explains a lot of my childhood, though I had migraines even as a very young child.  (I know: I'm so wonderfully lucky, aren't I?  Excuse me as I keel over!)

And so there you have it.  A few little tidbits to mull over in your mind - or not, as you wish, though I'd rather hope something here is of use.  In any event, I wish all of you a wonderful weekend, with you feeling your very best, only better.  Ciao and paka! 

Is Pacing Over-Rated?

  

Not my little room, but you get the idea.

It's truly amazing that in our CFIDS/ME/CFS and/or fibromyalgia world, we are never able to let our guard down.  Do so and continue ahead at your own peril.  The world, it often seems, is full of danger and you proceed as if you are in a minefield. (Can more clichés be added here?) Spontaneous acts achieve nothing, it seems, but add a bit of spice to our lives, though often at a price we're not always sure we want to pay. (Hopefully, clichés are now ended!)

I had a rough time of it last Friday.  It had been a rough week. I'd finally reached a point where I was overwhelmed by the insomnia, the migraines and dealing with the whole thyroid situation. Constant were the aches and huge pains I was experiencing and a plethora of symptoms I'd either not registered or have mercifully forgotten.  I was exhausted, too, by the fact that my painkillers were not relieving me of any of the nastiest parts of this DD and so I decided to go with Plan B, sigh.  When things are going too poorly, I get to a point where Plan B appears to be the only means of escape.

And I hear you!  What the heck is "Plan B," right?  Well, it's my version of Lamaze, the kind I started and honed as a child.  

I started experiencing migraines at an early age and ended up with a means of distracting from the pain without realizing I was doing so, or even acknowledging the pain was there in the first place.  My mom honestly never believed children get "headaches"; she was completely convinced that they only cause them.  So, I suppose my little grade school brain finally found a means of escape: do some mindless physical work to distract yourself from the pain.  As I wrote in Friday's post (link), that means of distraction turned into cleaning floors, and by the time I reached high school, I always had bright sparkling floors, be they washed and waxed or vacuumed within an inch of their lives.

Sadly, these days the only "mindless" work I can do is dust and, ironically - or according to "Murphy's Law" - it's the one household chore I absolutely abhor.  I LOVE to clean, but the DD has taken this pleasure away from me as well.  However, I thought SURELY I could dust!

And how the house needs dusting, and a bit more!  Any room near areas where our old wood floor under the old carpeting was uncovered and refinished was thick with dust, despite our previous attempts to solve this problem.  Any rooms near areas where wallpaper was taken down and then said walls spackled and sanded before being painted, are also full of dust.  We had air cleaners going, but they weren't able to accomplish much under the circumstances.  Consequently, between a few symptoms of the hypothyroidism and the dust, I was coughing an awful lot, not to mention that my voice was always hoarse.

So, on Friday I was in dire straits, a particularly bad day.  The insomnia, the thyroid, the pain, the sad look of the room where I keep my much-feared computer, the area where I put the finishing touches on my posts and often choose to tweet from was REALLY getting to me.  What could I do BUT turn lemons into lemonade, again?  It would be a risk, but talk about desperate times!  And talk about the need to feel better about things in the long-run!  Desperation was oozing out of me.

So, I decided that the books in the bookshelves needed to be dusted - thus finding what I thought was the "mindless chore" I so desperately needed.  Nothing comes easy, however. I did need to add a bit of complexity to the job by getting rid of anything on the bookshelves which wasn't a book.  I finally decided that if I couldn't pitch it, I'd go the chicken's way out: stick it into one of the kid's old rooms which is already a disaster area and thus have only one central disaster area to contend with later.

I know, it's double work in some people's eyes but I belong to the school of cleaning that thinks it's best to make one central mess to work from.  For me, perhaps precisely because of fibro-brain, it's the best approach.  Decisions are hard to make and the whole point of the exercise, after all, was to do a MINDLESS chore.  I'd already decided that the physical part be darned.

And, as is often the case with those of us with the whole CFIDS/etc and fibro fiasco life challenges, I went too far.  When hubs arrived home late from work, he ended up helping me "close up shop" for the day.  Books and all sorts of debris were all over the floor and walking through was like navigating your way through a minefield.  I might be a mountain goat who has no problems getting through, but let's just say it's a good thing hubs never joined a circus.  He'd have served well as dinner one night for the lions - after not mastering tight-rope walking.  But patience?  I have very little of it and he has it in spades.  I suppose that's part of what make us such a great team.  So floors were cleared and one section of the bookshelf was BEAUTIFUL.

As the evening progressed, I complained that my leg with the neuropathy was hurting and cramping and I then spent half the night dealing with THOSE pains in addition to the stuff I had relieved for a few hours while "just dusting."  Hubs was a bit annoyed, giving me sidewards looks that said loud and clear, "you SHOULD have been in bed resting."  I, in turn, was giving looks back to him that said, "you don't have to deal with migraines, do you?"  There was so much non-verbal communication going on that we could have written a long book from it and it wouldn't have taken much to turn it all into an unpleasant verbal conversation as well. (Joke, I think!)

So, going back for more of the "I-can’t-learn School of Irene's Science," on Saturday I decided to do yet another section of the bookshelves.  In my defense, I'll say that I hadn't slept for two days and two nights so not only was I in a desperate state but my judgment was just a TAD on the impaired side.  My foot was swollen even more, tight to almost bursting, my head was still throbbing ("throbbing," such a tiny word for what was really going on!) and I thought that the satisfaction from a job well done and a pretty room would be just the ticket to make me feel better, albeit only psychologically.  But hey!  Don't put down the psychological reinforcement and satisfaction.  Sometimes it's all you have!

After a few hours hubs arrived home.  Imagine how NOT surprised he was to see me hauling books, wiping them off, moving them from room to room, all while doing a seemingly good imitation of "Hop-Along Cassidy" because my foot was more swollen than before and putting any weight on it was close to excruciating pain.  Helping me clean up my mess, we ended up with an almost sparkling little room.

...and a surprise at the end.  To make a long story shorter (what?  This IS the short version of it all!) I ended up with cellulitis of the foot (and hands?). I'd spent so much time at the computer the day before (another Lamaze-type diversion) that the fluids built up in my legs, and then who knows what else happened?  Perhaps between the books and the manicure I gave myself, bacteria got into my system and bad magic took place.  Whatever it was, my hands were swollen to the point that I could barely bend them, my foot was swollen to the point where I started looking things up on the Internet (never a good idea when so desperate). My foot had become red, a rash had developed AND the foot that's always ice cold was suddenly hot as well.  In fact, I was shivering and running a fever.

So, moral of the story?  There's a lesson for me to be learned here, but I know myself well enough that I probably won't learn for next time, though I should.  But the joy I now feel when I see the room clutter-free and dust-free was and IS worth all the pain.  For me, it was a wise investment as hubs shakes his head at what he considers to be my insanity.  But a pretty room can never be underestimated as a healing power.  Now when I go to the feared computer, I get great satisfaction seeing bookshelves that are full of old friends I've not seen in ages.  The air cleaner has worked much magic in getting rid of the dust that was stirred up, despite the best dusting cloths. I can breathe clean air, not sanded-down air when I come into the room.

And, most importantly, when it comes down to healing: I had a "marathon sleep" of 12 hours. Yippee!  Really!  With the help of an anti-inflammatory and the antibiotic the swelling has come down enough where it isn't pain off the charts.  The fever is gone, the rash is on its way out, though my skin DOES have a reptilian look to it, the scaly look from the swelling and fever, a classic reaction to what went on.  The blue-black hue has left my nail beds.  I can see that things will soon be right with the world.

But sometimes a girl's gotta do what a girl's gotta do, despite the cost.  As long as everything is capable of healing - that is, I'm not at risk of losing any more body parts - I'm thrilled I took the risk and made some headway into a huge project.  I've said it often enough: sometimes to survive, you need to come out of the normal protective shell you're forced to live with.  Sometimes you just can't keep calculating every step you take and every move you make.  Sometimes fighting this CFIDS and fibro animal is not rest but a feeling of accomplishment and that you've had your way, not allowing the illnesses to defeat.  Pacing, I think, is simply too over-rated.  There!  I've said it, and THAT in and of itself makes me feel better.

As always, I hope that all are doing their very best only better.  (As if fibro-logic is ever going to win with me!)  I wish my old Russian Orthodox camp buddies and my relatives a Merry Christmas - we're always a bit out of sync with the rest of the world.  Ciao and paka!

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!

Not Now Dear, I REALLY Do Have a Headache!

Pregger's motto to self: I do NOT have a migraine, I do NOT have a migraine....

There are a few subjects which haven't, as of yet, really been acknowledged in this blog, mainly because they are such enormous problems in our CFIDS/ME/fibromyalgia world that it often feels as if I'll open a can of worms too difficult to deal with.  And who wants worms?  They are such slimy cruddy things  - the worms, I hasten to add, though the migraines could very well be described by those two adjectives, as well as many more!  I'm afraid, frankly, to even start in, but I'm taking the plunge since the migraine aspect of this illness is a huge problem.  Furthermore, it boggles the mind to realize what an enormous problem migraines are across the board, across all societies.

Though I think I'd always had bad headaches as a child, I was never able to acknowledge them since I distinctly remember my mom telling me that children don't have headaches, they caused headaches!  So, somewhere along the line I must have learned to ignore them and in doing so, I must have come up with ways or strategies which enabled me to deal with them.  Washing and scrubbing the floors on my hand and knees was one strategy, I realized many, many years later - it was a particuarly effective coping mechanism with the added benefit of seeing a job well done. (Goal-oriented?  Nah!  That's not me!)

And if you think about it, this coping mechanism was in many ways the sort of thinking and way of enduring pain that I later learned in Lamaze classes before my first child was born.  And boy (or girl)!  Did I ever want to be scrubbing the hospital floor when I went into labor with each of my 10-pound screamers!  Somehow the hospital staff was not responsive nor convinced by the strategy I proposed: their loss!

But let me tell you: I've always lived with spotless, gleaming floors and they are a "thing" with me as far back as I can remember.  Well, not in very recent years, but that's only because my body's no longer able to do this "deflection." However, my mind has yet to be convinced, as often happens with so many aspects of this DD!

My "denial" over headaches/migraines didn't last too long once I married and became a baby factory.  One day happy hubby came home from work and we sat down to "chill" out with my juice and his soft drink (party animals that we were) watching "Wheel of Fortune" (getting nerdier by the minute?) when hubby shouted out, "look at that!"

Well, I couldn't exactly look at THAT, since I had almost no vision in my left eye and the right wasn't doing very well either.  When I calmly explained to practically-hysterical hubby what was going on, he wanted to drag me to the ER immediately but I simply didn't want to be put on display.  I was already 6 months preggers with child #2 and there were also practical considerations!  Who would take care of baby # 1, for example? Would the Doc Juniors working the ER's even know what was going on?  This early in my CFIDS/ME/fibro saga (still years before a diagnosis) I was already, instinctively, saving up my "health credits," - "spoons" as today's generation calls it.

I felt that annoying hubby was blowing everything out of proportion.  I had difficult pregnancies and every problem I'd described to my ob/gyn was a classic pregnancy symptom, even if many were a bit unusual.  Why would this blindness be something to get excited about, I wondered?  Of course, I conveniently forgot that terrified-hubby's grandmother went blind completely during her next-to-last pregnancy never regaining her eyesight.  Consequently, she was never able to actually see her 9th and 10th babies. (These women should have gotten medals of some sort, I swear!)

Luckily, earnest and freaked-out hubs was able to locate a neuro-ophthalmologist for the next day - in 1980 they were hard to come by, but it was NYC and to give NYC its due, you can find anything there.

As it turns out, the diagnosis was immediate.  Quite simply, I was experiencing a migraine equivalent, something that happens relatively often, I understand, to pregnant women who experience severe migraines.  

Well, what wasn't so simple was that I told my doc that he was sooo wrong, since I never even experienced headaches, never mind migraines!   A bit of childish "yes, you do!" and "no, I don't!" went by for a bit with my noticing that ever-annoying hubby was not coming to my defense!  Instead, he just watched us go back and forth in a sort of trance, almost as if watching a tennis match.  When I finally called him on it, he said in a shocked but hushed voice, "but you DO, Irene, you tell me you have headaches all the time!"  Huh?  Oh what a betrayer!  How dare he LIE about something so important!  (And I happen to have a huge bugaboo about lying - huge! Was I going to have to go to divorce court?  Were my hormones all over the place?)  At any rate, this was the first I'd heard of such nonsense!  Where the heck did he come up with this one?   Did he want a diagnosis so badly that he agreed with something that was so very wrong?

As it turns out, I was the person in the room who was in deep denial (ironic since I just wrote recently how I do NOT do denial, but please keep in mind that this all happened before I'd become a "professional patient"!).  The denial was so deeply entrenched that my mouth would complain about the darn "headache" and then I'd go into floor-washing mode, never hearing my own words, never realizing why my floors were always gleaming.  Yes, noises bothered me at times (ok, almost ALL the time), light was such a factor that I practically turned our bedroom into a bat cave and so on and on and on....  But hey, didn't everyone?  (No, they DIDN'T, you stupid, stupid young fool!)

After that, I'd always felt that perhaps the reason that my migraines became progressively worse was because someone had dared to yell out that the Emperor had on no clothes.  Once those suckers were identified, there was no turning back.

What I've come to realize, however, is that with the second pregnancy, it was no shouting out about emperors nor clothes that caused the progressively unmanageable migraines.  It was simply that my body was no longer able to play the mind games that were involved in denying my neurological problem.  Worse, I was so afraid of side effects hurting my babies that I never took any meds for these migraines, despite reassurances that a pill every once in a while wouldn't hurt.  Huh?   No, I wasn't about to endanger my babies and there were many times that hubby and I would cry together trying to get me over the worst part of a particularly bad migraine.  

What I also realize, in hind sight, is that the reasons my migraines had reached such epic proportions when just years later I was OFTEN hospitalized for these "little headaches" was because I was getting progressively worse with this monster illness of CFIDS/ME/CFS/fibromyalgia.   My body had had too many physical stresses put on it since that infamous flu that started this whole mess.  And the physical stresses just wouldn't let up.  The latest had been that I'd lost more than half my blood volume in a sudden gush when I delivering my first baby and the problems that were put on my body as a result of the complications of that delivery were further assaults on the body.  They were signs, in fact, trying to warn me that I needed to slow down and that my body just couldn't take any more abuse.  It was most unfortunate that no one realized, in the middle to late '70's and even well into the late '80's, that there was much more going on than "simple migraines," though of course, there's nothing ever simple about migraines, period.

Getting the migraines under control took many, many years and many hospitalizations.  The meds back then, compared to today, were woefully pitiful.  We, for heavens sake, didn't even realize what was happening, everyone (but me) making excuses for anything strange that happened to me, from pityriasis rosea (a childhood illness I had before my first pregnancy) to shingles, an "old folks" illness at the time not seen in a woman still in her 30s.

Eventually, my migraines became totally uncontrollable, but once I hit rock bottom, it was only then that I DID get them under control.  Yes, I still get migraines.  Worse, I get "body migraines" as well.  However, this is all for another post since I've already gone on way too long!

In the meantime, I hope everyone is feeling the very best they can be, only sooo much better!  Ciao and paka.


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