The Mary Tyler Moore Show

After

Before

Before

Now what in the world could Mary Tyler Moore (aka Mary Richards for those who remember that iconic show) have to do with anyone who suffers from CFIDS/ME/CFS and/or Fibromyalgia, not to mention another couple of dozens of "invisible" and debilitating illnesses?  Well, bear with me and you'll find out - I hope!

As I wrote yesterday, I'm now living through the second scariest and most agonizing period of my entire life. Number 1 was, without a doubt, when we went through my daughter's ordeals for two years.  She had more near-death experiences than anyone should.  Now I'm living the 2nd worst time of my life.  In case you've forgotten (and who could blame you with fibro-brain going on?) I'm living through the scariest time in my life, from the CFIDS/ME/CFS and Fibromyalgia and all the complications involved, but also in just about every aspect in my life that I can think of.  As I mentioned before, in missing about five weeks of posting, y'all have missed out on a whole bunch of "good stuff."  Of course that depends on how desperately you want to know what's been going on.  (And I do so hope someone cares!)

It's amazing what people know about you and what they don't know.  My daughter was over a few days ago, bringing over some liquid detergent.  I'd run out of two and a half large bottles in about three days.  Daughter was a bit surprised that I was able to do the laundry, especially so much.  

Well.... blow me down!  She, who knows me pretty well, never knew about this quirk of mine.  There are two tells: one is pretty obvious.  When things get bad my green eyes turn blue.  When I get REALLY really angry, I am a cleaning fiend.  Combine that with....

OK.  Where's Mary Richards in all of this?  We need to go back to 1970 and thereabouts.

In college we would sit in the corridor huddled around a tiny TV to watch this amazing show of the woman we all wanted to be.  We wanted careers like Mary had, not the stuff that women were forced to do.  To put you into the era, my entering class was the second one to officially admit females.  The school had to "refurbish" a second dorm for us, evidently very quickly, running out of precious time.  How do I know this?  Well, when we arrived, all fresh, bright and bushy-tailed, we discovered that our huge bathroom had urinals in them (now THAT was interesting since I'd never seen one before!) and gang showers with no shower curtains.  (Try being big-breasted!  Those endowed tried to take 3AM showers for a smaller audience.)  

So, I hope that sets up the picture. Mary Richard was beautiful.  She had the perfect clothes, she had the perfect job, she had it all.  We all desperately wanted to grow up and be her.

During one episode Mary (the one in the TV, not any old Mary hunched on the floor of the hall) was upset about something, and it was a BIG upset.  Either Rhoda or Phyllis made a comment that when Mary gets upset she starts cleaning.  I loved the line and really never gave it another thought. 

So, back to the new age and the new decade.  My daughter comes over to the house and sees that there are a lot of things going on, but especially laundry.  At first I didn't understand why she was so surprised and didn't even give it a second thought.  But then my daughter said a few things that amounted to "I'm so glad you're taking this all so well and that you look good," yada, yada, yada.  

What?  Are you kidding me? In what world am I taking this well?  In what way could all this manic cleaning be a good thing?  

What no one's ever truly realized is that if I'm in a lot of pain I wash floors, cook, bake. They were "sort of" used to that premise though not really, if you know what I mean.  I've been doing this sort of diversionary thing since I was a little kid.  In fact, my mom would say, "children do not get headaches, they cause them." What's a kid to do?  So, I found coping mechanisms along the way. With child #2 I went blind in one eye for a couple of days and a neuro-ophthalmologist  (a rarity even in NYC in those days) told me it was a classic "migraine equivalent."  For the debate on that, this link re migraines will tell you about that little adventure.  

The neuro-ophthalmologist was amazed at my "diversion" tactics.  I can handle a LOT of pain.  Not bragging, just the truth.  In fact, when I see a new doctor, it's hubs or one of the kids who "squeal" that I can withstand huge amounts of pain. I feel like everyone says that and so I don't go there and am embarrassed when said family butts in with this bit of info. 

So, pain I can't tolerate: SPARKLING floors that a baby could eat off of.  Really.  (In fact we need a new kitchen floor and that isn't driving me nuts ONLY because I am at the end of my ropes in this awful stuff that's going on around me!)  

So my poor daughter sees that I'm doing laundry - I love doing laundry and rarely get to do it any longer - and thinks, "mom is doing so well!"   Oh, you little amateur, my baby. You know your mom not quite as well as you thought.  (Can I a put a "huh!" in there without sounding too petty?)  

You see, when I go ballistic, and I mean when it's a rage, sadness, fear, feeling that your own family doesn't understand, unbearable pain that's at the magnitude of a definite 10 but you want to say it's a 20, when I'm completely off the wall in pain with nothing helping me at all, I start cleaning walls, mirrors, play jack-in-the-box (popping in and out of bed, falling half the time), that means that you really do NOT want to mess with me. I'm using all my diversionary tactics.

I've always had a "thing" about cleanliness.  Up until I became a baby factory, I used to take three showers a day: in the morning to wake up and get all that filthy, disgusting dirt that you just know I picked up from the sheets that I just slept on (which were changed every other day), a second shower once home from outside (can't blame me for that!) and a final (number three in case you've lost count), to make sure I'm going to bed clean because it felt so good.  

I vacuumed a not small house every single day, even when I was overdue for baby deliveries, while my mom would practically have a heart attack that I was doing such disgusting things. She also thought it completely immodest and perhaps immoral to be out in public once I was about 6 months pregnant. Yes, it WAS a different world!

So, I had to explain to my daughter how this works.  

Thus far, every pillow in the house has been washed.  That's four beds with at least 4-6 pillows on each bed but for the twin bed with only three pillows but lets not forget the "extra pillows" for when you need different pillow(s) for who knows WHAT reason!  The down ones need to go to the cleaners but I need someone to take them. I have washed every single pillowcase, pillow cover, sheet, duvet cover.  I've washed almost every T-shirt, leggings, nightgown, pajamas and any other article of clothing you can imagine but for the ones that need the cleaners. 

I'm now into the many, many tablecloths and cloth napkins.  (I'm crazy in setting a great-looking table....we all have our vices, admit it!  Come on... it only hurts the first time!)

I've emptied out closets.  I'm organizing jewelry.  I'm organizing makeup (how embarrassing...lipstick story is for another day!!!).  

I'm throwing things out right and left.  Of course, only after enough suffering on making that decision.  It doesn't get thrown out if there isn't enough ANGST.  I do have an excuse for that, however: I am deficient in the "throw things out" gene.  I always throw things out that I end up needing.  I'm still grieving about a purse I threw out twenty five years ago! Yes, yes, I know it's time to get over it, but..... try to see it from my side! PLEASE! (LOL!)

Today daughter stopped by to tell me that she's too tired for Dancing with the Stars and could we hold off another day (tomorrow) to watch it?

And she STILL doesn't understand the premise here.  I am royally upset, ticked, afraid, sick and so many, many other things that only a bucketful of miracles and prayers can turn things around.  And yes, my friends here, on Facebook and on Twitter... I am so very much indebted to you.  Never let anyone tell you that Twitter is a waste of time.  Not only have I made some really wonderful friends here but the support has been incredible (to be gone into at a later date.)

So, as a tease I will write down what I plan to cover, if I can get the "energy" for it:

• Yesterday I couldn't take it with the gardening and will report on that front for all the spoonies out there who love gardening but have had this pleasure taken away from them due to stupid illnesses.
• I plan to write about the 'diet" (way of eating) as requested by a few people on twitter.  I've been putting it off because I barely know where to start but it's the right time for it now... if only I can get my head around it.
• There were the insane ER visits a couple of weeks ago that have got to be heard because this is hitting not just in my geographical area but is taking place all over the US and it's frightening. 

And so daughter understands me a bit better now.  You can't blame her for not knowing this.  How often does this cleaning diversion take place to the laundry and closet level?  If we're lucky, it's about once every few years.  But you get to the point that all the pains going on in your life get to be too much and nothing, other than prayer, helps to get over things as well because a clean, decluttered, organized home ... there are just very few things that make you feel truly at peace.  It's such a small thing, you would think.  But it's incredibly healing.  For those of us sick with the DD, only when you get enough of an adrenaline rush can anything like this be accomplished - at least for me.

Now someone take me out to the back of a barn somewhere and just shoot me!  Talk about pain and paying back for all the stuff I'm doing.  Sometimes you just have a no-win situation.  Rest and the pain is intolerable.  Do something to distract from the pain and you pay in spades.  What's a person to do?  Work on until you drop is my most recent motto because it won't last and at least I'll get something out of it in the end.... or so I hope! 

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

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Another Reason Your Diet May Not Be Working?

The summer before my body stopped producing HGH.

Do you have Fibromyalgia and happen to also have a big belly?  Well today's post may help - or at the very least open your eyes to an avenue you may have not yet considered.  


Today I'd like to touch upon a health problem that is often seen in those who have CFIDS/ME and Fibromyalgia, but often WHY this problem is happening seem to escape explanation.  A rather large subject, I'd like to simply start an intro into this area and explore it more in the future, if necessary.  Sometimes I feel as if I'm opening a can of worms when I start to address a subject: today is certainly one of those days.


It's that of the big belly that is so often seen in patients with CFIDS/ME and Fibromyalgia.  The pituitary part of the brain is broken, to put it simply and succinctly.  I'm going to give you MY story and hope that you realize that this is just one person's experience. (Oh, how I hate all these disclaimers!  They make me sound so SERIOUS, whereas I do prefer laughing about the ridiculousness of my situation.)  On the other hand, aspects of this may help you reach some conclusions in your own cases.


I've been embarrassingly frank about the nature of my skin in past posts.  Yes, I get hives and all too often have all sorts of skin sensitivities, but like my mom and both her parents, I've been blessed in the wrinkles department and most especially in the healing-of-the-skin department.


I have numerous stories of scratches, scrapes, cuts and burns over the years which should have left scars but didn't.  Of course, I do have scars, but not as many as one would think, given the escapades of my tomboyish childhood.  


But to move this story along: one day, in particular, I was told by over-protective hubby that I wasn't to get out of bed that day because my face told him that it would be a day when I'd be vulnerable to accidents, falls, whatever.  As I've written before, my family can usually read how I feel much more accurately than I can.  To me, basically, each day is pretty cruddy, health-wise, and I have to learn to rely on others' observations.  On this particular morning, I'd evidently not learned that lesson.  Later that morning, feeling as if I just had to get out of my skin or I would go crazy, I decided to make myself a cup of tea.  Granted, I had to go downstairs for this, but I honestly thought I could handle it.  


As I opened the cabinet with all the "tea necessities," the little Cuisinart coffee grinder fell onto my head with the sharp blade slicing my forehead open, blood suddenly squirting everywhere.  I finally called hubby - and how much I didn't want to, you can only imagine, since I had been "warned" that bad things would befall me (groan: a pun) if I got out of bed - and he said he'd take me to the ER.  And thus an argument ensued. I was simply in no shape to go to the ER, no matter what.  By the time hubby arrived home and saw the mess, he was really insistent that I needed that area stitched, but I had to make him understand that I didn't care about the darn scar which would, undoubtedly, form smack in the middle of my forehead.  I simply could not move or have anyone touch me.  Hubby said he'd call an ambulance.  I told him that if the house were on fire, I literally would not be able to move.  I was just feeling that sick, weak, nauseated, and a myriad of symptoms that I can't even describe.


Hubby did the best he could with sticking on a few steristrips and a couple of days later, when I actually cared enough to think of how I'd look for the rest of my life, I looked at my arsenal of healing things and decided to try the lavender essential oil I had.   That summer, many people (doctors) shook their heads when they saw my "wound" (I mean it was right there on my face, hard to ignore!) and everyone said how stupid I was not to have gone to the ER and had a plastics guy fix it up.  This was said to my face at parties...I can't even imagine what was said behind my back!  Even then, the consensus went, I'd have a rather nasty scar.


Well, the joke was on them: my forehead healed wonderfully, thanks to my Bulyga and Lisovsky genes. There was not even a TRACE of a scar, which even by my own standards should been a mess.  Essential lavender oil started getting a reputation in some circles around town, as it rightfully should have.


So, imagine how surprised I was a few years later when each time I turned around I'd either burn myself taking Christmas cookies out of the oven, scratch myself moving a piece of furniture away from a certain spot in order to vacuum, or cut myself doing some silly bit of prep work in the kitchen.  Suddenly scars were forming that simply wouldn't go away.  More than one friend asked why the heck wasn't I using that "voodoo" stuff I'd used in the past.  When I realized it was the lavender oil they were talking about, I didn't know what to say.  They were right: why WASN'T the lavender working?


But the incident that really hit it home for me was the one in the garden.  I was putting in annuals, a very simple job even I could handle.  After the flowers were all in, it was such a great feeling.  The garden was going to look pretty good this year, I felt.  A couple of days later, I noticed a scraped area on the top of my foot, the area above the arch.  I looked and couldn't figure out what the heck was going on and was puzzled. That area had been a bit red after gardening, but it shouldn't have scabbed over...it should simply have disappeared.  It was a result of my kneeing down at times and the grass rubbing against my foot as I scooted along with those annuals.


Because the area wouldn't heal AT ALL, I pointed it out to my doctor a few weeks later during my monthly visit.  He didn't think much of it at the time but I wasn't letting it go.  I had to defend my ancestors' genes, after all.  Much was at stake!  I reminded my GP how the lavender had helped during that unfortunate forehead incident and he more or less did see that it was an unusual scenario for me but still thought I was a bit "over concerned."  The following month, my foot looked no better.   Now, I really wanted answers. 


More cuts, burns, scratches occurred - naturally, since I'm not the most "stable" person in the world.  Hubby likes to say I've fallen in all the great cities of Europe and it's true.  We can now even add Australia to the continent count.  Back then, I was horrified to see what the heck was happening to my skin and was getting royally upset.  


FINALLY, the time came to have blood work done, a relatively regular occurrence since there are certain meds that I'm on which can have nasty side-effects and also because we always find some sorts of goodies to address.  My HGH level was taken because I had suddenly started exhibiting a huge belly. Pregnant I was not: the emergency hysterectomy performed fifteen years before insured that. 


Well, lo and behold: my Human Growth Hormone (HGH) byproduct (IGF-1) was at the level of a 98-year old woman, whereas I was only in my late 40's.  Essentially, I was dying as organs became weaker, including my heart, my lungs, and so forth.


Yes, I'd become so weak that I was now completely bedridden.  Another test was run, and yes siree, there was no mistake.  My body had basically stopped producing HGH.  I had to be taken to Pittsburgh to a specific hospital to have "the gold standard" test done on me: the arginine test. If you fell asleep when the IV arginine hit your system, that suggested that you had no Human Growth Hormone being made by your body. I, the insomniac whose insomnia is so severe that it's actually been labeled by one neurologist as being "malignant," fell asleep the second that arginine hit my system and proceeded to sleep it off for the next few days. What bliss!  Don't I wish I had access to some arginine most of my life?


It took almost two years from the day we realized that I had an HGH problem to the day I finally started taking the HGH.   My hubby would call the insurance company, the government, the company that made the HGH and would beg to pay for it himself until the insurance company could get its act together for me to start with my daily shots but was refused each way he turned, as I got progressively worse and even ended up in the hospital.  And the scary part was that each day we were all afraid that I would soon be dead.  My organs were barely making it.  I was now at about the "age" of an 109-year old woman.  There were many long and funny stories around this period of my life which can be addressed at some other time, but only funny now so many years later when time has taken away the sting and we all know the ending.  One "cute" story: having to be carried out of the auditorium as my daughter's NYU class came in for their graduation.  All I kept thinking was, "thank God this is not her wedding!"


Eventually I was given the OK by all agencies involved.  But then the spy vs. spy scenario started.  You see, HGH is not something that you can simply pick up at your local CVS pharmacy.  No, an APPOINTMENT with a courier is made each month for the delivery and it must also be confirmed each month as to time and place. I love envisioning my hubby behind some dumpster making the illicit trade-off of the refrigerated HGH.


In the spirit of shortness, since I really do want to make my posts much shorter, I'll just make a few points.


First, it took two years for my body to recover to the point where the proper amount of HGH was reflected in my body for my age group.  They were an extremely rough two years, to put it mildly.


Second, I was extremely lucky.  My blood turns cold when I  realize that HGH was approved for use in adults only two years before we realized that I'd need HGH.  Had my body stopped producing it just a few years earlier, I'm afraid I'd have been dead.


Third, I suffered much irreparable damage.  Two discs totally dissolved and the bottom of my spine is gone also, among other "goodies."  My cholesterol count is really off and because I can't get it under control, I've given up.  It doesn't seem to matter what I eat: in fact, when I adhered to a heart smart diet, my cholesterol went up, when I ate whatever I felt like eating, it went down, though still at a totally unacceptable level by anyone's standards.


Four, I must see an endocrinologist about this and not all endocrinologists are built the same, evidently. That is, not all endocrinologists are "inclined" towards prescribing patients HGH.  Don't ask why since I've yet to figure out what THAT's all about.  The tests are there to show that I clearly need it.  Why only some endocrinologists can or will prescribe is an issue I'll never be privy enough to answer.  Worries of governmental agencies coming in and auditing the doctor?  I have no idea.  It's an extremely controlled protocol and has very rigid criteria. I live in fear of what happens to me as a patient when the very senior endocrinologist I go to finally DOES retire.  He's only working because he has so many patients who are dependent on him.  His is not an easy life when half his patients are brittle diabetics who, of course, often need to make middle of the night emergency calls.


Five: What is the insurance max in my case?  The medicines I take are costing us a bundle, even with insurance.  Add in the HGH and it's really a huge cost.  What IS my cap?  


Six: where the heck is this stuff coming from?  I don't even want to know and have purposely stayed away from all in regards to this part of my care.  I literally cannot live without the HGH and I don't want to know what problems may lie ahead of me because of my having to get daily injections.  Yes, close monitoring is done to make sure that I am getting only the amount that occurs in a woman my age, but there are always complications to everything a patient takes, and I'm sure that this is even more so in a case such as mine, given the bucket load of problems I already have.


And finally, what scares the crud out of me?  That for some "funny" reason, arginine, the amino acid which they inject into you for the "gold standard test" to establish if you are severely HGH deficient, is suddenly, mysteriously disappearing!  


To end the story (and hopefully I'll still be around, the pharma's not sending anyone out to bump me off because my mouth is too big) -  I don't heal as well as I used to before I ran out of my own ability to make HGH.  I'm alive, and yes, I realize I'm older, but really, I know where I should be and I'm not there.

I also worry about the people out there with growth hormone insufficiencies.   I so hate that word, "insufficiencies," since if you're making the hormone at all, you are then not ok'd for the manufactured hormones and your goose, it could be said, has been cooked.


If you have a belly that makes you wonder how you could possibly be pregnant or if you suddenly start getting scars from incidents that you normally wouldn't scar from, check into your HGH level. 

But I'm glad to report that despite all, including my son very inadvertently jinxing me by calling me "the weird mom with no wrinkles," I have not disgraced those ancestors of mine and that THAT part of me is doing OK: the Bulyga's and the Lisovsky's should be happy I still have so few wrinkles!  (Knock on wood and a tphoo! tphoo! tphoo!)

Laughing about the price of being a girl...

Happy feet in flip flops.

I hope that this is the last of any reports on my "beauty adventure" from last Saturday - for a while.  I'm crashing badly although yesterday I finally got a chance to check out my new washer and dryer - the one that's been in the house for almost two weeks!  It was absolute torture not to try out those machines with their bells and whistles, finally delivered to the house and not be able to do a single thing about it. Understand, I absolutely love doing laundry - one of my many quirks.

I also wanted to slip out of the house to take pictures of the tulips which continue to come up, as well as the dogwoods in full bloom.  Frustration.  Hubby did this for me but, bless his heart, he forgot the trees.  He also couldn't get the hang of cutting down MASSIVE amounts of lilacs for vases around the house, perhaps the one tradition I have every the spring, a total must.  The smell of those lilacs in the house always triggers some primitive part of my brain that says, "hallelujah! we're in for some wonderful gardens now!"

But one wild adventure a day (a load of laundry in case you've lost count) is almost too much and putting in a load of towels - well, since they were all whites, I figured I couldn't mess that load up too badly.  

As I've already established, I'm still crashing  - badly -  from Saturday's beauty adventure but the results were great.  First I want to say: it was FANTASTIC getting out of the house.  Not fantastic getting ready, but after that part was over, the rest was pretty darn good.

I loved going to my "beauty heaven" for my hair, mani/pedi, and having my eyelashes and eyebrows colored - the brows shaped as well, into the newest form which calls for a softer arch, and I am loving it.  Everyone did a great job and thanks to all that teamwork - emphasis on "team," which actually felt very much like a "village" - I'm starting to look like a girl again - OK, "woman," but understand that we females of a certain age still have a really hard time saying that word about ourselves with a straight face!

The "fixing me up" feels so incredibly renewing.  The hair is quite short (think "pixie"), my usual, with good highlights and lowlights.  Diana found FIVE more balding spots but was able work her genius.  Shaving my head (really!) is starting to sound better all the time.  I think I could carry off the turban look but my BFF said that a friend of her's was really miserable when her hair started growing out.  More misery I don't need.

But I'm so delighted that I now have eyebrows and ones you can actually see because of the coloring.  Lan, the eyelash/eyebrow superwoman, really was surprised that I have a few more hairs in the eyebrow area and this allowed the brows to pick up a lot more color than usual (go brow-hair growth enhancers!) thus deflecting the eye away from the age spots I love to fight.  I love that I no longer feel as if I have an arrow pointing at them for all to see.  Come on, I need a hobby and who says fighting age spots can't be fun?

I'm trying to organize the products I used - a lot, and I couldn't find some of my old "stand-bys - reorganization and decluttering badly needed!  Actually moving back to my bedroom and bathroom is what is badly needed.  Living with remodeling is the absolute pits and soon it'll have been a year on this latest phase alone.  

Anyhow, as I try to make sense out of my beauty products, my wardrobe, I keep getting flashbacks of an old movie from the early 60's, "The Flower Drum Song."  This is rather unusual because so many of us with CFIDS, CFS/ME, fibromyalgia, insomnia and migraines (etc.!) are so sensitive to sound and the energy that it induces is hard on our neurological systems, giving us an artificial "high" which we then pay for later, in SPADES!  Nonetheless, I keep wanting to burst out with one of my all-time favorite songs, "I Enjoy Being a Girl!"  

I saw the movie back in the old days when there'd be a double-feature and you'd usually walk in to that first showing, caring not one iota as to which part of the movie was going on - probably because no one seemed to keep track of time back when life was slower in the '50's and early '60's, most especially in the South.  You'd watch till the end of the first movie, then enjoy (hopefully) the second film, usually leaving when you reached the point where you'd walked in with that first feature - or when your parents wanted you back home again, whichever came first, I suppose.  

Well, not me with "Flower Drum Song." I watched it three times!  That's a whopping six plus movies in a row.  How did my backside handle it?  I guess it was being so young, a nine-year old.  

But even back then, though I was an unrepentant and proud tomboy - I actually earning myself the nickname "Jane" (as in Tarzan's wife), after one episode of beating and scaring the tar out of the four older boys who were attacking my younger brother.  EVERYONE called me a tomboy (as well as "bookworm' but that's for many later posts) which I rather liked.  It was an identity I carried proudly, despite the ballet lessons I took each week.  But I ALWAYS knew I loved being a girl.  The words, "with a pound and a half of cream upon my face" from the song "I Enjoy Being A Girl" fascinated me and drew me in.  After "The Flower Drum Song," I wondered about all those "girly" things for days and days...if not years and decades!

Oh my.  I just took a break and returned from YouTube. I discovered that there was a book, as well as Broadway and West End versions, of "The Flower Drum Song" and the movie's hit song, "I Enjoy Being a Girl."  I'm so incredibly happy that it's not been forgotten.  It would be like forgetting "the Sound of Music."  Actually, I can envision Maria singing, "I Enjoy Being A Girl" from that mountain top!  I think I've been won over by the latest version of the song with its peppiness and gusto.  I don't usually go in for peppiness but when I have to do "the girl" thing, as when going out for a doctor's appointment, this may start my blood flowing and, what little adrenaline my body can still produce, to start percolating.  It's certainly worth a try.  

So, hands and feet, check...a huge consideration since I can't do these little jobs since the accident with "the claw."  Of everything, I miss manicuring the most - how crazy is that?  Anyway, eyebrows and eyelashes check.  Hair cut, highlighted and low lighted within an inch of it's life, check.  New skincare products to try and to enjoy, check. (More on those at another time too!)

"I Enjoy Being a Girl" from "The Flower Drum Song," thanks to YouTube, check.  Here's the link. I hope you enjoy the gusto even if you don't happen to be a person who cares for perkiness.  But it does get the adrenaline flowing and reminds you why we "women" love and need these little extras in our lives, despite paying the the price men just don't understand! 

http://www.youtube.com/watch?v=URlW5NK2doA 

(If this link doesn't work, simply go to YouTube and put in "Flower Drum Song" as sung by Lea Salonga.  I think it's worth it!)

Spring and the CFIDS "on/off" Phenomenon...

Our baby weeping cherry tree made it through the non-winter.

It's spring and that alone puts me into the best of moods.  My legs are killing me and I am thrilled about it!  Why?  Well, this past week I made myself run out (metaphorically speaking, of course - I actually practically crawled down the stairs) to take a few pictures with my iPod of the bulbs coming up.  Oh what freedom!!!  I've not been out of the house for weeks - months even, canceling doctors' appointments right and left - and then worried I'll be dropped by my doctors for being so "irresponsible and/or for wreaking havoc on their schedules.

It had to have been funny for any neighbors looking out and seeing me getting down on the ground for some close shots, in something looking suspiciously close to a nightgown.   Actually, it must have been interesting to see me at all. I am the "phantom neighbor," sort of like during my kids' high school years, by which time this horrid illness had become so severe that I became the "phantom mom."  There were rumors that I existed but no one was REALLY sure.

Anyway, the next day after my "photography" adventure, I happened to glance out the window (I should try to do that more often) and noticed that the trees were in bloom and hoped against hope I'd be able to "run out" again for ten minutes within the next day or so, before all the blossoms disappeared.  Three days later, I was ever so pleased with myself because I was able to do so and even stick to my strict limit of ten minutes and no more.

And wouldn't you know it, but just as I laid down on the ground, hubby dearest arrived home - in the middle of the day, for just long enough to cut the grass and run back to work. This NEVER happens!  I was, simply put, BUSTED!   Fortunately, my red face made hubby refrain from lecturing, though since then every once in a while he mutters "ten minutes, huh?" -  just loud enough for me to hear.

My family laughs that my life is either "off" or "on," with no in between and I'm beginning to see that they are right.   "On" means going on for hours, though it rarely happens anymore.   But there are at least two reasons for this "on/off" phenomenon.

First, it is really hard to change gears with this DD, CFIDS, CFS, ME and/or fibromyalgia with all its complications including migraines, SEVERE insomnia, nausea, eye vision problems, falling down, ulcers in the mouth which often make it impossible to even swallow water, speech impairment, memory loss that is more like amnesia than just bad memory, swollen lumpy nodes.  When you are finally well enough - angels singing Hallelujah! - to take a bath you then stay in way too long and pay for that for the next few weeks - if you're lucky.  When you're lucky enough to start to wash your face you start with soap, then a cleanser, then an exfoliant, then throw in a facial mask treatment for good measure and keep going because who knows when you'll be able to wash your face again?  You start a book and just can't put it down - because you can't change gears and because tomorrow you won't remember anything read the day before.  You play a mind game and force yourself to dust and declutter your nightstand and soon you're dusting everything in sight.  Your adrenaline has kicked in to assist the painkillers and if they happen to FINALLY work and vertigo doesn't start in, nausea, along with a dozen other possibilities, you become unstoppable.

Your cautious, "know-it-all" mind tells you to stop because IT knows perfectly well the price that will be paid, but your brain is damaged and can't turn off. If someone interrupts,something weird happens to your head, your blood sugar, your momentum and you are startled so badly that a migraine starts. The crazy list goes on and on, of examples and consequences.

Secondly, I've learned that pacing myself simply doesn't work - for me, that is.   Everyone is different.  It really doesn't matter if I spend five minutes doing something or five hours doing something - the end result is the same - and that is, that you'll always be in worse shape the next day or the third day after, for however long the fates have slated, I suppose.  That is why I so often go "all out" if I can manage to drag my body out of bed. And as long as I'm not standing still (because my BP plummets even lower and very quickly) but moving or sitting down on a stool I keep inching along - I become the Tasmanian devil.

I rarely disclose any of this because...drum roll, please...I am sick and tired of the "advice" I get from people who really have no clue, including doctors, about how I need to learn to pace myself, or I must make an effort to push myself,or I must learn how to NOT push myself, etc.  I rarely hear what I need to hear, what pretty much all of us need to hear: listen to your body and LEARN FROM YOUR BODY what's best for you.

So, getting back to my capturing pictures of my garden, I did the mature thing and took 10 minutes worth, washed off and got back into bed.

But now I'm too exhausted and in too much fibro pain, shaking, fighting off a migraine, with blues that are felt down to my very ankles from the awfulness I feel, unable to understand the simple concept of even how to wash my hands with Dove, much less wash my face. There are other symptoms which I'm not really registering, being so good about denial.  Pain killers are no help.  This is disheartening because washing my face at least once a day is one of my New Year's resolutions and I'm doing the best I've done in at least 15 years.  I'm ticked off that I didn't work out there until I dropped.   At least something would gotten accomplished - more than neighbors seeing the mystery woman ambulances appear for every once in a while. (LOL!??)

However, now my thighs are killing me too and I'm LOVING that!  This is the thing to have happened to me in ages:  the wonderful hurt a normal person gets after a period of slacking off and then doing a good work-out. It hurts but it's the "good" kind of hurt that I remember from 37 years ago, which so rarely happens anymore.  And who knows...I might even be able to add riding on my exercise bike for two minutes every few days soon.  I've still not given up my dream of going back to taking very elementary horseback riding lessons, though I fear I've jinxed myself by revealing that dream here. (And yes, of course I've knocked on wood and done the "Tphoo! Tphoo! Tphoo!" bit. I'm a supertitious Russian/Ukie by blood after all!)   But I am definitely going to TRY to keep up my attempt to record my garden's progression.   We all do so much better when pretty things surround us and we all feel much better when we see that we've actually achieved or accomplished something, be we sick OR healthy.  I know, clichés, but true and very well worth keeping in mind.

Happy Spring, everyone,
Upa (aka "Ира")

About Fibro Brain...

Our first batch of hyacinths is making an appearance! 

Since we've had no winter this year, it seems that the beautiful bulbs my hubby and I planted will start coming up soon.  I've noticed others post lovely pictures of their flowers on their Facebook wall/albums, or on their blogs.  I thought I should give it a try because....

Well, first, let me back up here for a moment for the backstory.

I had ordered bulbs back in June/July for fall planting.  By ordering before a certain date you receive a huge discount (50%!) and I'm always up for that. My last massive planting was back in 1996, quite some time ago, I'd say.  Those bulbs lasted quite a while, though granted, each year we had fewer and fewer flowers coming up in the spring.  

Understand, our house needs some serious curb appeal since a contractor who took down our falling-apart front porch failed to ask me if I wanted to save any of some pretty wonderful landscaping I had. Oh, we needed some serious overhauling, and every one of the bushes was meant to be moved, but away, not forever.  I especially miss my white oak leaf hydrangeas which I'd planted as little more than twigs, well over fifteen years ago. Again I digress, but you get the idea. 

This year we had to do extensive remodeling (thankfully by another contractor) and since the work was and is still on-going, I thought bulbs would at least cheer up the front of the house - not to mention that they would delight our poor neighbors, I'm sure.

When I ordered the bulbs, however, I didn't take into account that my "gardening son," my "assistant," may very well be out of the country come bulb-planting season.  The bulbs were delivered to our doorstep by UPS in mid-September, but I put off planting them seemingly forever - thanks to the DD (code word for "Dreaded Disease," etc., if you recall).  But one day I bit the bullet, took up my gardening equipment which hubby had kindly put aside for me in a convenient spot, grabbed the bulbs and made my way to the front porch.  I wasn't exactly bouncing along, but at least I was up.  On the new porch, protected from the sun, I proceeded to line up the bulbs by color, type, height, growing time, color combinations.  It was truly a magnificent sight, all that coordination and organizing.  I was quite pleased with myself, I must admit.  I even took out a sketching pad and pencil and marked the places I'd put groups into and how many for each group, which would be in the front, which in circles, which scattered and naturalized - again, you get the picture.

That day, after about fifty bulbs, all my plans went kapooy!  Hubby came along and I snapped at him that I knew exactly what I was doing, thank you very much.  I noticed him grabbing a glimpse of me every thirty minutes or so, sure I was going to pass out before too long, or worse, fall and hurt myself and need a run to the ER for an X-ray....it's happened more than a few times before.  By nightfall, despite the many cold glasses of water I gulped down (to keep my blood pressure up), I was running out of steam and welcomed hubby's carefully worded offer to help clean up.  He looked at the bulbs still to planted and then at me and asked, "HOW many bulbs did you order?" Very matter-of-factly I answered, "oh, about a hundred and fifty."  Good thing I couldn't seen the eye roll because of the dark, otherwise, the MAN might've needed the ER.  (OK, I'm kidding about him and possibly needing an ER...somewhat!)

Well, the expected happened.  I paid for all my efforts the next day and the next and the next....  Can we all say, "post-exertional fatigue!", one of the hallmarks of this DD?  I could manage the pain this time, but the fatigue was now the real killer.  Hubby kept asking if he could help.  Through gritted teeth I kept informing him that I'd get out there and do it myself, thank you very much.

To make a long story short, a few weeks later hubby ended up planting the rest of the bulbs himself.  He planted another hundred and didn't make a dent.  Each day he'd rush home from work to plant as many as he could before the sun went down.  For the first time in my life, winter hours were my enemy and I wanted Daylight Savings Time with its extra hour of light - a definite sign of my desperation.  We kept trying to figure out new areas to plant the bulbs because the darned bulbs seemed to be mysteriously mutating and procreating.  Hubby started to use flashlights strategically placed around himself and any particular flowerbed he was working on.  We got to the point where it didn't even matter WHERE those bulbs would go.  We just wanted those suckers in the ground!  Eventually we tallied up each bag and how many were in each one.  It turned out that there were over five hundred bulbs, all for a lot not much bigger than a postage stamp.

The moral of the story: CFIDers and those with Fibro can't count nor should they be believed that they can overcome all obstacles.  We may think we can, even truly believe so, but nothing is further from the truth...we are all too often in serious denial, thinking we can do what we did before we became ill.

People, please take note.  I'll be discussing this further once I can get my wording correct, but there's a point I'd like to bring up at this point.

There IS a difference between depression and fibromyalgia, with depression on the one hand and CFIDS and Fibro on the other, contrary to what all too many doctors, as well as crazy psychiatrists and psychologists, seem to believe.  With depression people feel as if they can't do anything, they can't even begin anything, all because of the feelings of desperation, uselessness, and being overwhelmed. With CFIDS/CFS/ME and Fibro, on the other hand, we  all too often think we can do, as I said before, whatever we could do before we became ill.  When we can't do something despite every effort, we get angry, we cry, and/or become upset, a normal reaction. 

Now that's a HUGE difference, one to explore for another time.

In the meanwhile, I can't wait to see what kind of mishmash comes up this year in our garden.  Should be interesting!

Laughing from my sickbed starts...

In the past year and a half I’ve learned how to navigate the Internet, somewhat, finally!  It’s all due to my family’s latest effort to drag me, yes, kicking and screaming, into the 21^st century, this time with an iPad.

I call it the “idiot pad,” because surely it had to have been invented for those like me who absolutely fear computers. Or are constantly breaking them.  But more on that later.

I started, after a few months of leering at the iPad with disdain and suspicion, to fool around with the darn thing.

Oh yeah.  I missed a biggie here.  I’m basically a bedridden person.  So the idiot pad was perfect for me in that too.  I didn’t have to get out of bed to rediscover the world of the Internet.  Yes, I could get out of bed some days and try to communicate through computers which I feared and broke on a regular basis, but my brain was then so fogged up that it was a truly painful and awful experience for all.  In bed with my iPad, I could actually think!  And I love to think.  It’s actually one of my hobbies, sometimes to my family’s dismay.

But this blog is not going to be just about being sick.  Frankly, I try to hide my illness from the world, often successfully.  People tend to think I’m simply a hermit.

I, in turn, discovered Facebook.  Actually, if truth be told, I was forced to discover it, but that too is another story, for another time (hopefully!).  As I found friends from my past and formed a few new friendships, I now heard a new message from them.  For years and years people would say to me, you need to write a book!  Ugh!  I’m not up to it.  Now I was hearing, “you need to write a blog.”  Me: what’s a blog?  (I told you I was dragged into the 21^st century but you didn’t believe me, did you?)

Then after ordering books from Amazon on blogs – but never reading them – I thought, no blog!  I’m much too private a person for that.  I mean, I was upset when the number of people I’d friended on Facebook reached 13, then 20, then 25.  I kept having to up my “no more than” number.  I’m up to 40 now and that just about makes me break out in hives.

But I think the time has finally come to start a blog, or to at least try to start one and see where it goes.  I stumbled over one blog a couple of weeks ago, A Model Recommends, from a British model who’s just so sweet and funny, writing about beauty, skincare, all sorts of the fun things I do love.  In secret I’m a bit of a beauty products junkie, though not successfully since I….  Well, more on THAT later too!!  I thought to write to Ruth, our model, to see if she’d consider adding anything at all for those of us with, ahem, shall I say “slightly more mature skin?”  Well, I discovered, almost all on my own, that her mum had started a blog too!  What fun.

I then desperately wanted both of them as my buddies and that’s when I realized that if I didn’t want to become some sort of stalker crazy person, it may be best if I just go and try my own blog.  Even my hubby, who must win some sort of award for being a privacy nut, keeps saying I need to write a blog!  And I’d also just realized that you can learn everything and anything you want on YouTube, so inadequate computer skills were no longer a legitimate excuse.  (More on that later on too!)

And so I am going to try this new social experiment.

Most of all, I love to laugh and I love to make other people laugh.  No, not in a Billy Crystal or Joan Rivers way (can you tell I have the Oscar’s on my mind?) but in a funny next-door neighbor sort of way.  So, I do hope this blog will be funny or add a chuckle to your day.

And I love to read…in fact, I‘m a bookaholic but due to a few crises in the last couple of years I’ve, for the first time in my life, not been able to read.  But I am starting to regain that concentration, so there is hope.  I belonged to a small book club I co-started in our small town when my oldest was in 3^rd grade (she’s 32 now and is a teacher with her own self-contained autism classroom – forgive a mom for bragging!) and this was before anyone had even heard of a book club, even Oprah.   But we fell apart after about 15 years once retirement started in, as well as politics creeping in….

So, books, yes.  Politics, no – not in this blog.  Fun, yes, seriousness, yes, at times, as in how to live more easily with chronic illness, tips and so forth.   Books, a bit of history…how, even, to get more sleep, a biggie for all, I’m discovering, much to my dismay.

Beauty, yes!  Fashion, yes!  Gardening, yes!  Cooking, yes!  Travel.  Being a mom, a wife, a best friend, yes, yes, yes!  Even a bit…ok, perhaps a LOT, of musings.  Certainly ramblings, which I’m so famous for, will unfortunately, find their way into this too.

But most of all, all with a bit of laughter.  It helps cover a multitude of sins and helps ever so much to get us through whatever problems any of us are going through!  Such a cliché, I know, but there you have it….

So, kick up your feet and join me in what I hope will be my new adventure!

All best,

Upa