Friday Tidbits: Housekeeping

Steel Magnolias Cast 

Never in a million years would I have thought that I'd be writing a post about cleaning products.  It seems like such a 1950's thing to do.   And yet I know that my environment profoundly affects the way I feel.  It's a huge contributor to my mood of the day, week, month.  There's a wonderful line from Steel Magnolias that I absolutely love:

I'm not crazy, M'Lynn. I've just been in a very bad mood for 40 years. ~Ouier (Shirley MacLaine) in Steel Magnolias.

Yes, sometimes I can certainly identify with Ouier's character, especially as a person who has CFIDS/ME/CFS and fibromyalgia, not to mention all the other "illnesses," "conditions," and "syndromes," which I get all because of the old monster.

It's a funny thing about me.  After the Christmas decorations come down, I start in on my "spring cleaning." There's something about the sudden drabness of the house.  Or perhaps it's the opposite: that I'm finally just so glad to get rid of the "clutter" that I want to enjoy the clean lines and a really clean house to match.  I never even realized this until one year when I happened to be doing bills and noticed that February's water bill was double our usual cost.  I called the water department and the woman I spoke to noticed that every February my water bill had suddenly elevated.  So, it turns out that I do a "January cleaning" every year. Who knew?  Not I, that's for sure.

So, it will be time to clean again soon.  Actually, hubs and I got a good start this weekend.  But first I must mention that we don't take our tree down until after the 7th because of the Old-Style Eastern Orthodox Christmas being celebrated so much later than the rest of the world.  By the time the 8th rolls around, I'm beyond ecstatic to be rid of the tree.  Hopefully, this year we'll be able to find someone who'll do the bulk of the cleaning, considering I'm still not allowed to do much, nor able to do much and hubs has too much on his plate.  Again, this hurts, as many things about this situation does.  I'm the odd duck who absolutely loves to clean house. The only chore I dislike is dusting and guess what!  The only thing that I think I'll be able to do IS dust.  Boy, this CFIDS/ME/CFS and fibromyalgia are real kicks in the heads. (Over and over and over again!) Just take away all my pleasure and stick me with the things I don't like.  Wait.  Oh yeah! You - CFIDS/etc, fibro - you already did that, you evil body invader.

And I haven't mentioned that as much of a beauty products junkie that I am, I may be even a bigger cleaning products junkie.  I am absolutely embarrassed as to how many cleaning products I have: baskets and baskets full, though, you guessed it, they are lost somewhere in the basement with the overrun of things from the remodeling.  I can spend hours looking up cleaning products on line, and do!  (Have I mentioned, lately, that I need a life?)

Anyway,  I thought that I'd write down a few of the products that I couldn't live without.

No, I haven't lost those marbles that I've been left with after the CFIDS and fibro monster got its way with me. No, I just thought that I'd mention them since they are so easy to use and we really do need that!  No longer can we take our sweet time about really scrubbing a floor, cleaning windows, moving furniture to vacuum and dust behind said furniture.  We're lucky if we can remember to brush our teeth or have to make a decision as to whether we'll do this and sacrifice that or that and sacrifice this, basically, very close to the spoonie theory.

For those who can still do housework and cleaning, let's just say that I'm green with envy though in the nicest of ways, of course!  (Hahaha, she says!)  But seriously, as our energy is so limited, we really do need to try to get the most efficient of products.  And homemade is not efficient for me, unfortunately.  That ship has sailed, long ago, in fact.  At any rate, I hope that the suggestions listed are not too obvious.  But I love them to pieces, so they're getting included here for those who somehow missed these products.

• Number one on my list has got to be the Mr. Clean Magic Erasers.  Personally, I think they're the best thing since sliced bread (NYC bread, not just any kind of bread, mind you!  I have taste!) They clean a remarkable array of things and do so very well.  I use them all the time on painted surfaces, baseboards, the kitchen, the bathroom.  The only draw-back that I can see is that they do tend to leave a bit of a film which gets just sticky enough to attract dirt and dust, so I always rinse everything with fresh water.  But the Erasers are so easy to use and such a time and energy saver (of self) that it's worth the rinse.  I even used them recently on ground-in dirt on my very old white kitchen floor which needs replacement.  (No, Meslissa, you did NOT hear that!)  Best of all, jobs require  a minimum of effort with these erasers, so good for our poor CFIDS/ME/CFS and/or fibro-weary bodies.

We could have used this a few times. We were NOT smiling! 

• Secondly, I also now use the new micro-fiber cloths to dust.  They don't spread the dust around, but pick it up quite nicely. Last week I made a list on Amazon for a few different types of cloths that seem to have a wax coating, hoping they'll do the job. Hubs ordered a few the other day and ...MELISSA: close your ears and eyes!  (OK, I think she's gone.)  I used them on one rather large bookcase the other day.  Fantastic job.  But we also got the micro-fiber cloths which I'd  loved from Williams Sonoma but they're so expensive that surely there must be a good equivalent somewhere. On the other hand, in my dusting efforts I'll spare little expense as I want to make sure that I don't have to re-dust all the places where the "ash" from the sanding of walls and floors accumulated and I've tried to keep up with the obvious areas.  Better yet, when I washed the cloth in the sink, just rinsing them in some soapy water, the water turned brown.  I love when I can see those kinds of results for my efforts!  Immediate gratification!  Gorgeous job.  Love, love, love mine.

• Thirdly, I'm in love with a window cleaner called Sprayway Glass Cleaner.  I spent a fortune on a can of it at Restoration Hardware about 15 years ago (perhaps $12, see what a crazy cleaning person I am/was?)  Then I discovered that you can get this cleaner at the dollar store for, yep, a dollar. Obviously, we stocked up.)  It's a foaming spray and I love the results and ease. (And I apologize to the Sisters who taught us to use water and newspapers.  My excuse: I'm allergic to newpaper print. They produce migraines.  (Hope Melissa heard that one!)

• And finally, if you have the cash, I love the steam machines that clean everything.  I thought I'd do all my windows one year but that fizzled out after a couple of rooms.  However, the windows I washed shined almost like diamonds for the longest time, much better than the ones a professional did.  I think because it was just plain water/steam, there was no film whatsoever to make dust cling to it.  And an added bonus: everything gets sterilized because it's steam!  These machines will clean just about anything and no chemical products are needed.  In fact, no products are needed period.  So, although it's a (huge) initial out-lay of cash, eventually it'll pay for itself, not to mention the toxins that your house doesn't need coming in.

And that's it.  Here's to cleaning whenever you choose it to be!  Do you have some favorite products that make your job at home just a little bit easier?  We'd love to know!  In the meanwhile, I  hope everyone's feeling their best, only better!  Ciao and paka! 

Friday Tidbits: A Chatty Weigh In

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

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

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

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

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

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

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

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

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

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

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

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

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

 Here are some of those bullet points: 

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

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

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

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

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

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

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

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

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

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

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

Soon, I hope, soon, soon, soon!

A Good Way to Start the New Year!

We started at the end of February, days before the Oscars (be still my heart: "but it IS Colin Firth!").  One of the most popular posts was the one on the Oscars.

As I look back at last year, I'm so glad that the year is over.  We overcame so much.  Our daughter had had successful tricky surgery and was recovering.  I had surgeries and many things went wrong health-wise.  My boys had their health issues.  Suddenly we were a family with embarrassingly bad health luck.  You certainly don't want to walk (or get wheeled into) a hospital with the receptionist looking up at you and starting to enter data into her computer before you even get to the desk!

We had blessings as well.  Ok, I'm not happy that the house is a mess and the remodeling is not anywhere near complete, and you can't find anything you're looking for.  But my middle child got married and I was able to fly (for a price, a HUGE medical price) through twelve time zones for the wedding.  I was able to meet the bride and get to know her and her family.  I never thought I'd make it to Asia but somehow I did.  Secret: it was never even on my bucket list! 

I started a blog, yet months before, I didn't even know such an animal existed.  I've made my family happy because they get a bit of a break from me when I'm writing.  They don't need to answer so many questions or feel guilty that I'm in bed almost 24/7, usually alone and too sick for any company.  

I'm thankful for the friends I've made on twitter and the friends I've reconnected with on Facebook. I can't believe that I can actually SORT OF use a computer and the Internet, thanks to the iPad given to me just weeks before my daughter was first hospitalized.  By her fourth or fifth hospitalization I pulled the monstrosity (the dreaded iPad) out of my bag that I was dragging around with me from hospital to hospital.  When my daughter got stabilized one night - and I dared not move away from her bed - I pulled that sucker out and tried to understand what all the hype was about.

 That, in turn, led me to the family then trying to get me in sync (HaHaHa: a computer pun!) with the 21st century and gifting me with a computer of my own, again!  I kept breaking them, through no fault of my own!  It was a hard and frustrating road and still is.  But I'm doing it and I thank you, those who read my blog regularly, because suddenly I feel as if I DO belong to the human race and may actually have something I can contribute to it.  So, take a bow and curtsy for my thanks to you all.  And I've managed to learn how to sort of use twitter, though that's very much a work in progress.

And in that thankful spirit, to start the year off, I'm doing a picture-heavy post of some of the highlights of this year, a retrospective, if you will.  Enjoy!  You've been part of this, whether you realize it or not!

We talked about holistic medicine in addition to traditional, Western Medicine, but more still to come!

I lambasted the CDC, the NIH and the so-called specialists who were really our enemies in too many instances and proved to be more so on December 20 with the Ampligen hearings (fiasco).

My heart was broken when the posts I worked so hard on became unloved stepchildren and didn't get as much attention from viewers as those dealing with makeup and skincare.  I love both subjects.

We talked a lot about family and the benefits of laughter.  I love this because you can finally see how loony my family truly is: hubs and daughter after two sips of champagne, laughing their fool heads off as they tease me about my taste for contemporary Russian pop and my trying to get them to love it as well, though they can't understand the lyrics (blah blah, blah blah, blah blah!)

At last our first spring together came, and we had beautiful tulips, hyacinths, and other flowers from all the bulbs hubs and I planted when we talked about fibro-brain on this blog.

We celebrated what was for most our first Russian/Ukrainian Easter together, one that falls on the "wrong date" most years...

A two-fer: We talked about insomnia and my daughter was home from the hospital, finally. (Knock on wood for both!)

We enjoyed learning about the makeups that worked well with our funky skin and were easy to apply, like the  BB creams and the CC creams (One link and another link product, Trish McEvoy, as well as pampering)

We spoke of Brain SPECT scans scans and lamented that they had gone by the wayside for fibro  and CFIDS/ME/CFS

And a new miracle cream, Heal Gel was found in Britain which did miraculous things for the  hardiest of scars, including my daughter's.  (A new review, updated and detailed soon to come!)

We talked about makeup techniques, brows 4, brows 3, brows 2, brows part 1 and time savers.

We shared holiday tips on how to survive and we looked forward to the New Year.

 And so, Happy New Year (and a Happy New Year in Russian too!)

And we made it through the holidays and somehow survived!  Here's to starting the new year, 2013, on the right foot.  Here's to all having everyone's health improve.  Here's to all laughing as much as possible and having much love in your lives.  And here's to getting to know you.  

Ciao and paka!

My Big Decision

New Year's Eve in the mid 1970's when I was full of resolutions.

Yes, I've finally decided that I will definitely make a New Year's Resolution list this year.  Normally, I'm not one for lists.  I've found that with my CFIDS/ME/CFS, fibromyalgia and all the complications that stem from these core illnesses, resolutions really are a futile act in frustration.  Last year I broke down and had only one resolution: that is, to look human.  And I failed, dismally.  The surgeries, the pneumonia, the hypothyroidism, and a host of other problems didn't help matters, I must admit.  But it's always mortifying to be on the losing side, even if it's not necessarily your fault.

However, this year I feel that I need to go on the offensive, that I can't expect to survive another year on the defensive, or just going along with whatever comes my way.  This year I'm determined that I will get my life in order as much as possible and will not feel guilty about trying to find happiness, a real "guilt" word in my way of thinking.

So, I've started my list and though it's not complete, I thought I'd share what I have so far.

• Anyone reading my posts in the last few weeks knows that I'm now in "The Hunt of Red October" mode.  I have good news and bad news.  Hubs and I had a disagreement of who remembered what but it turns out that I was wrong.  That's the bad news.  (I'll throw the guy a bone and say he was right.)  Hubs has, after all, been very good about getting one of the bedrooms decluttered (I couldn't even show you a picture of what the room looked like but imagine an episode of "Hoarders" and you get a good idea.  He's also been cooking his heart out, poor soul who lacks the cooking and baking genes.  So, it's only fair, that I humor him and tell him, "yes, dear, you were so right and I was so wrong."  (Ha! That's going a bit over board. I'll probably say, "yeah, you might have been a bit more accurate than me," and no more.)

The good new, as it turns out, is that I have my meeting with the endocrinologist next Wednesday, not in six weeks, like I swear hubs told me.  No matter, other than I need to start to work on my list of what to discuss. I'm even planning to go into the whole sleep problems if there's time, since I realize how much hormones are at play with sleep, each year with increasing realization on behalf of the medical community of how strong the links are. (See this post for a discussion of this.)  Forget the neuro who tried to convince me for two years plus that rohypnol, the date-rape drug was a good way for me to go.  I think we'll try the hormone approach if at all possible.  Also to be discussed will be my problems adjusting to the hypothyroidism diagnosed back in October and the fall-out from my gallbladder surgery, which is still doing odd things to my body.  We normally go up for my growth hormone deficiency, but at the moment, that seems to be the least of my problems - well, other than the fact that I need that HGH working at its best because of all the healing going on in the missing gallbladder area.  The man may run me out of town by the time we're halfway through the visit ... there will be THAT much to discuss and at a very advanced level since we've covered every angle that isn't of the highest caliber already.  (Oh darn...this means I need to do the makeup and bathing and getting dressed routine. I hope I can do all of this!)

• I've decided that I need to go back to trying some of the things that have worked in the past, specifically, the essential oils that helped me so much, combined with massages.  I only hope that the masseur is still in business and can come to the house.  The myofascial pain, fibromyalgia and migraines have gotten completely out of hand and so the massages are a huge help.  I'm embarrassed to say that it's been at least ten years since I stopped the weekly work-outs.  Adding the aromatherapy blends help the effects tremendously.  I'd like to try some other therapies which have worked before, but I know the risk one runs into by trying too much.  So, aromatherapy and massages it will be!  Baby steps!
• Knowing what a perfectionist I am and how my surroundings really influence me, especially if they're not right (and we are so far from right that we might as well be on the moon, that's how bad things have become).  Some rooms in the house are jam packed with the things that are from the empty rooms that have been in the remodeling and redecorating phase for at least three years now.  This is totally unacceptable.  I mean, I used to vacuum my house every single day and we have a pretty large house!  The clutter has gotten out of hand because it's so easy to let things go when you've got a mess and you're living a "Green Acres" sort of existence. Furthermore, it's easy to to let things go when spending huge chunks of your life in hospitals as we did when my daughter came down with her sudden onset of a vicious Crohns/Ulcerative Colitis hybrid no one's ever seen before. (Great luck, not!)  I don't know how I'll manage it, but everything has GOT to get done by Easter, whenever that may be.  This has gotten to the ridiculous - and extremely depressing - stage.
• I also need to find someone to help cook as well as clean the house, not to mention doing some gardening.  Unfortunately, we live in an area where "good help is hard to find."  (Long story!)  People (best friends even) keep their cleaning people's names a SECRET, it's just that bad.  But I need to bite the bullet and get onto finding help because hubs is already a caretaker (who "waters and feeds me") and holds down a job which requires 7 days of work a week.  Furthermore, we are getting too old and body parts are breaking down left and right.  No longer can we go at the pace we've always gone before.  This is something I dread doing: how DOES one find someone in a place where there is very little help, no matter the price?  Wish us luck in this department please!  So, ridding our house of anything extra and getting help.  Yep, this will be the Achilles Heel in the whole thing.  I think finding a cure for CFIDS will be much easier! 
• I want and need to start making trips to TJMaxx.  We're throwing away too much money on places that I order from on-line and this has to stop.  At the rate we're going, we'll run out of all money before the next year is over.  Besides, I really need to get out of the house.  The number of times I need to go to places like Kohl's and Bath and Body will have to be calculated as to what is a good rate, one that won't set me up for failure, but it has to get done!  This may sound trivial to you, but a real biggie for me.
• Be more religious and strict about taking my vitamins and getting my nutritionals.  (More on this to come in a future post.)
• Oh how I hate to say this, but I need to get back to last year's weight. (How stereotypical is THAT?  I need to start eating healthy foods.  Of course, if I can get things worked out with my endocrinologist, I may have a chance of getting this accomplished.  Here's to my endocrinologist being  at his most inspired when I go to see him!
• And finally, I'll be trying to salvage that one resolution from last year, the one I dismally failed with: to make myself look human.  Wow.  Now that's a tall order!

That's it so far. I'm not sure I can or should take on anymore.  What do YOU think?  Any modifications or any additions?  Any suggestions on how to succeed?  Y'all have been awfully good at giving me advice that I find useful, so here's your chance to get your thoughts in with no guilt associated with it!  Besides, I'm sure we can all benefit from each other's suggestions!

And so we end the year 2012.  I hope we will all have a wonderful, fantastic and thrilling 2013.  I wish everyone a year that finds us all with improvement in our health (from our lips to God's ears, as they say), much success in all we attempt, much happiness and laughter in our lives and perhaps even most importantly, the gift of much love in our lives. Ciao and paka!   See you next year! 


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It's OK to Bully Fibro & CFIDS/ME/CFS Patients?

I was just about to START my dreaded work/labor of trying to fall asleep when I suddenly had a thought go through my head that has been bothering me for more years than I can even remember. The only reason it came to the surface today was because of the new year coming up and I was thinking about the person I am becoming (see link). To my surprise (though not shock), I'm not sure that I like this new person at all. However, in my defense, I think that it's not just me, but a complete intolerance that is pervading our society.  

It's a problem caused by lack of manners in our society, in general.  It has to do with people ridding themselves of the filter that goes between the brain and the mouth. It also has to do with a very dangerous and insidious form of passive/aggressive bullying, unfortunately, much of it on behalf of the medical establishment.  And make no mistake: it's a dangerous trend because this negative and even "ridiculous" picture of "us" trickles down and more often than not, influences how our friends, family, co-workers and just about everyone whom we come into contact with in our lives, treat us.

I really did not want to end the year on a negative note, but in thinking about things, I thought that perhaps this isn't as pessimistic as it is empowering.  And boy, we with CFIDS/ME/CFS and fibromyalgia and indeed, all "invisible illnesses," need all the empowerment we can get!

But first, the background, because if my readers know anything about me at all, it's that there's almost always a backstory which leads to the topic I happen to reflect upon. (In other words, I ramble on a bit too much! But some good stories come out of it, no?)

I'm puzzled yet again and am more determined than ever for my "Hunt for Red October"  and changing from the defensive to the offensive military-like plans which my GP and rheumy have put together for me.  We're bound and determined to try to get to the bottom of whatever it is that is "new, majorly wrong with me," something we've not had a chance to dwell upon because of all the red herrings thrown in our way, along with putting out fires, right and left. (See link about the "Invasion")

However, this illness, this cursed core illness of CFIDS/ME/CFS! Just as I thought I was making strides in the not falling and walking department, on Saturday I found that I was again too weak to walk the few feet needed to get to the bathroom.  I'd already been holding my breath for my appointment in six weeks to see my endocrinologist and have even thought I might give him some sort of succinct report, bullet points and all, in order to get through everything that needs addressing within a reasonable amount of time, an hour in the past, who know what now.  My ankles are frozen again and THAT adds to the walking difficulties in yet another way.  At any rate, back to topic: I've even had to start brushing my teeth in bed.  Hubs helping me walk is not awfully successful: it's all dead weight and really, with the orthostatic intolerance (and probably a host of other factors) I doubt that anything short of a stretcher would do.

I must admit that I'm beside myself.  I really am finding that I'm barely able tolerate this yoyo existence.   One day I'm getting better, the next I'm sicker than I've ever been before - and that's saying  lot for a 38 year history!  I'm definitely in a downward spiral, no matter how many pep talks I try to give myself and famiy. (Back to this post again for the "Up! Up! Up!" talks I force on my family.)

My "good" days aren't too awful, relatively speaking.  I can't get out of bed with the exception of going to the bathroom or sitting at my PC for a couple of hours - that is, if a pain killer helps me and is successful that day.  But I'm having major pain, weakness and migraines - not helped by any of my migraine meds - on a daily basis now.  I sit at the computer in the way a woman does her LaMaze for childbirth, as a distraction if I can manage it.  TV is certainly not keeping me concentrated on anything - though there is great hope for an hour each Sunday once Downton Abbey arrives here in the States. ;)

On my bad days, I feel as if there is no skeleton within my flesh.  I can't stand up. I feel like it must feel to walk on one of those planets where the gravitational pull is enormous.  I try to up my increasingly low BP with salt, but that's just not working much any longer. My nausea is a constant companion.  And yet half the things going on in my system I don't even register because my body is so overwhelmed and too ill to take it all in at once.  

But worst of all, I find that I'm becoming a person I don't care for.  I feel angry, frustrated and have no patience whatsoever.  I used to be a daughter of the South who would rather poop in my pants in public than say a harsh word to anyone, but now I have no patience with anyone who makes remarks such as "if only you would...."  And oh how I've never been able to suffer fools gladly, a huge defect in my character, I know.

However, if someone says that they are feeling their age too, I snap at them, unable to endure the platitudes any longer.  If someone (like an old college friend) makes a joke about my health, I can no longer pretend to find it amusing and "take it," but go into a Southern attack mode.  I have absolutely no patience and would like to smack people who offer me advice, especially in direct messages on twitter... 

How STUPID do they think I am?  They have no idea what stones we've dug up in the past 38 years, have no medical training, have no idea what my history is, have most likely never read my blog.  Yet "they" are so rigid in their thinking that they think, for example, that I will miraculously be better from occasional B-12 shots.  Surprise: I get a B-12 shot on a daily basis, but that is not good enough and so I  get crossed examined about other nutritional aspects which we've, my doctors and I, have covered in great detail over the years.  I even get a personalized version of a Myer's Cocktail a couple of times a month: how many can say that?  It's like these people have a bone that they won't let go of!  If it's not vitamins, then it's that if I get my hypothyroidism under control, I'll immediately and magically be cured, though my hypothyroidism became an issue only a few months ago and has been monitored by both allopathic doctors as well as homeopathic doctors, and everything in between.  

I thought that the turncoat medical CFIDS and fibro specialists were rigid in their thinking.  I'm finding that friends, extended family and twitter followers are even more rigid in their fanaticism.  And do they even think at all about what they say?  They just blurt things out, like a knee-jerk reaction.  God save us from these converts.

But I do want to say, and make it absolutely clear, that for the most part, everyone's been absolutely wonderful and supportive with advise.  I especially love the comments and suggestions I read here on my blog and my Facebook page.  These are comments which are diplomatically posed, by friends/supporters/members of my blog who have some idea of what is going on.  These comments I truly cherish because they are made with not only a "good spirit," but knowledgeable and diplomatic ways.  Yes, I've come to truly love all the readers who have written comments.  Some days, they really are what get me (and hopefully YOU) through the day.

And so, I wish everyone a wonderful New Year.  My sincerest hopes are that those who are healthy stay healthy, that those who are ill improve and live the lives y'all deserve.  I hope everyone is feeling their best, only better.  I appreciate everyone who is a member of this little group.  Thanks, guys.  Caio and paka!



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New Years & Goals/Resolutions

It's been a tough year, to put it mildly.  Furthermore, it's been only one of a very few years in a row of incredibly horrid and nightmare-quality happenings in our family - awful stuff which reads much more like fiction rather than like fact.  The sad truth is that if we had ever even considered putting our collective heads together, we couldn't have possibly come up with some of the things which have happened to us in the past few years.  We're all used to my CFIDS/ME/CFS and fibromyalgia and the surprises that these core illnesses bring with them.  What we'd not been prepared for these last few years is the really hardcore health problems which every member in our family has had to undergo, everyone of us in completely different areas of medicine and surgery, but with huge medical problems.  Unbelievable.

However, I am NOT going to be defeated, and I'm certainly NOT going to allow anyone in our family to be defeated!   We have a lot of obstacles to overcome, but overcome them we will.... Even if it kills me, which it might! ;)

I've been on my family like corned beef on rye about the fact that we appear (really, "appear"?) to be spiraling downward and the cheerleader/Pollyanna in me finds this completely and totally unacceptable.  "We're made of stronger stuff," I try to tell them.  It's one of the reasons that Christmas Eve and then Russian Christmas Eve - in January - as well as Eastern Orthodox Easter, are so important to me.  It gives me the opportunity to remind my kids, as well as hubby, what and where we come from, the incredible character and strength of our ancestors.

I've talked and talked to my family - until I often feel as if I'm blue in the face - about how important it is that we now do a monumental feat and start turning things around so that we will now find ourselves in an "upward spiral."  This won't be easy.  We are totally exhausted, though not YET completely defeated.  However, I want us all to find the strength to start putting huge smiles on our faces, no matter what.  Boy!  How my kids hate hearing this  "Up! Up! Up!" message from me.  Oh, don't get me wrong: they STILL love to laugh.  I  pray that we never lose that gift of laughter.  But I want smiles in there too!  Which leads me to...

I normally make up unofficial resolutions for the year.  "Unofficial"?  You wonder what this is and why?  Well, there are several reasons.  I realize that achieving and accomplishing any hard and fast resolution is an iffy proposition, at best.  Last winter, I thought that I'd hit rock bottom with my almost-fatal incident with the compartment syndrome surgeries and all the complications that followed.  However, little did I realize that I was in for a few other dishy surprises and that there were yet other health "problems" to be discovered and dealt with.  (Ha! Understatement of the year, indeed decade?)  

On the other hand, I also had two incredible things happen that I'd never have been able to dream up: starting a blog and flying - literally - halfway around the world, unexpectedly, in order to be at my son's wedding.  (Talk about shocking my kids!  There's little I LOVE more than to shake them up a bit occasionally!)  Of course, I paid a huge price for the trip, health-wise, and most days I feel that this blog will actually kill me.  But these are, all told, GOOD stresses!

And so, this year, with my health more precarious than ever, I want to be realistic, yet I want to push myself a bit.  How to find that happy medium?

For example, I've gained a bit of weight (?!?), thanks to the combination of the newly-diagnosed hypothyroidism and the emergency gallbladder surgery (with pneumonia thrown in for laughs) but I will TRY to lose the added weight, without beating myself up if I can't lose poundage for a legitimate reason.  For me, losing weight is definitely an "upward spiral."  When I can see and record a new lower number seen on my bathroom scales, the number (often, and, unfortunately) dictates my mood for the rest of the day.  If the number was higher or on a plateau, I'm in a foul mood, yet if the number was lower, I'm almost giddy!  (Yes, yes, yes...I'm totally superficial!  Tell me something I don't already know!  Again, semi-joking!)  I want to be VERY happy in the coming year, EXTREMELY happy, so I need to come up with strategies that will help me achieve this goal, given the newest complications.  New plans and approaches are definitely needed here now. Furthermore, I need an "out" in case other stuff hits the proverbial fan and I'm unable to realize this weight goal.  In fact, I need to realize - really and truly realize - that things can really go awry, and more weight can be added, depending on what state my health is in.

So, with all these caveats in mind, I will indeed make up an unofficial/official list of sorts.  I'll give myself the couple of days still ahead in order to figure out what it is that I can realistically hope to achieve to be happier in life, thus, hopefully, making me a better wife, mom, BFF, friend and person in general.  I'll need to think hard about how I'll go about making these changes, without inadvertently destroying myself.

At this point, I do know that a life with better health and thus, fewer ER visits, as well as hospitalizations, needs to be considered as goals.  We also need some time away from our too many stresses, which are literally close to killing us all.  A vacation with just workaholic hubs and myself would do both of us a world of good, I hope.  (Long story there, so don't ask!)  BTW: hubs objects and says he's "dedicated," not a "workaholic"!  Harrumph. I say, "Potato, potahto, tomato, tomahto."

So, I need to put on my thinking cap.  I'll let you know what realistic things I come up with.  Until then, do you have a few realistic goals/resolutions you wouldn't mind sharing with us?

And finally, I hope everyone is doing their best, only better.  Pollyanna here wishes all of you a wonderful new year, full of blessings.  Ciao and paka.


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How Many Deaths Will It Take?

...Yes, how many years can a mountain exist
Before it's washed to the sea ?
Yes, how many years can some people exist
Before they're allowed to be free ?
Yes, how many times can a man turn his head
Pretending he just doesn't see ?
The answer my friend is blowin' in the wind
The answer is blowin' in the wind.

Yes, how many times must a man look up
Before he can see the sky ?
Yes, how many ears must one man have
Before he can hear people cry ?
Yes, how many deaths will it take till he knows
That too many people have died ?
The answer my friend is blowin' in the wind
The answer is blowin' in the wind.
                                               ~Bob Dylan, "Blowing in the Wind"


The year ends on a very tragic note.  A patient with ME, from The Netherlands, died this morning due to the misdiagnosis of her ME and the doctors believing it was all in her head, the usual, though with fatal consequences.  Because of this "psychosomatic diagnosis," what was missed was her metastatic breast cancer.

I've written before that I don't allow myself to cry when it comes to this illness.  However, that has changed today.  Today I cry again for a senseless death. This is something that I've warned about in this blog and have written about on several occasions. In the post Betrayed!, I wrote:

"Throwing CFIDS into the psychological/psychiatric category causes people not to be inspired to look for the real causes or co-morbidities."

I know I must have sounded to some like a loony-tunes person who was totally over-reacting to things and situations which COULD occur, but that's not it, is it, folks?

And will anything be done about this?  NO, of course not!  We had Emily Collingridge's death back in March of 2012 (see link) with one of my very first posts.

We have seen repeatedly that no one really cares if we live or die.  The CDC got away with what it did back when the powers-that-be were finally talked into sending a team to Incline Village, Nevada, after the first cluster broke out.  The NIH got away with it when misappropriating the few funds that could be badgered into throwing us as a few bones, with no criminal charges taken for misappropriating funds.  Why should the so-called experts be called on the carpet now?  They see what they can get away with.

I highly recommend that one should absolutely read the excellent post that Jeannette wrote in her blog, "Thoughts About ME."  There Jeannette describes the Ampligen hearings on December 20 of this year (see link here) and the way even our "heroes" voted against us.  ("Is it that you're afraid of losing your ivory-tower Harvard position, Dr. Komaroff, that's made you into a turncoat," my words and thought.)   Jeannette writes:

"What I hadn’t accounted for in my attempt to predict the outcome of the meeting was that at least some (maybe many) of the 14 committee members would know close to nothing about either the disease or the drug. "

Who could ever have imagined the malfeasance by the FDA's obvious mistreatment of those sick with CFIDS/ME/CFS who were limited to three minute testimonies, coupled with the incompetence of the panel who sat on the board that voted.  Read the post, "A Plane to Catch," for the excellent account of what transpired there that day.  I'm still reeling from the news, but now, today, to add another senseless death to it all?

I'm beyond fed up!  I'm beyond livid.  I'm beyond disgusted.  As I've written a couple of times already (see link) as in my post titled, "P*ssed Off!" I've been sick since 1975 and I've seen nothing improve over the years.  All that's happened is that now a third generation is becoming ill.  This is nothing short of criminal behavior and really, someone(s) should be held accountable.

Criminal.  Full stop.  What else can be said, other than deepest condolences to the family and friends of Denise?  RIP, Denise.


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Friday Tidbits: ER & Sleep Survival

No one said it had to be an UGLY duffle bag and you never know: TJMaxx just might carry one!  (And the FDA will spontaneously change their minds about Ampligen tomorrow!)

"It's Friday Tidbits time, it's Friday Tidbits time..."  I'm so sorry I can't write out the music for the musical score (in my mind it's sung to "It's Howww-dy Doody time, It's Howdy Doody time...") but I'm just so thrilled that it's Friday again.  It's been a rough week.  And, yes, I feel as if I'm saying this with more and more frequency each week.  I'll need to work on that: sorry!  I'm hoping that once the holidays are truly over, once the remodeling is done, a cure for CFIDS/ME/CFS and fibromyalgia is found... now THAT'S mighty depressing ... sorry again!!!

But in true, recent family tradition, I made it to the ER yet again.  Old news, right?  But there is some NEW news that I've been holding back until today and that is: this time it went well.  Miracle of miracles, it was as if I had an acute problem, as opposed to the way I usually feel that I'm treated, as the patient with the chronic pain/illness and some sort of murky problems, thus deserving of bad treatment.  Usually, half the time the staff is totally unaware of what fibromyalgia is (or that it's not a made-up illness, as in Kiliwonga Disease, a disease I just made up this very moment) and can't get their heads around it.  Yes, the commercials for a certain medication which features fibromyalgia has gotten us onto the radars of more John Q Citizens knowing about the painful "syndrome," but I am beginning to think that those who work in hospitals do NOT watch TV, so that's not much help.  Forget about them understanding anything about CFIDS/ME/CFS - now THAT is certainly asking for too much. Instead, once the "F" word or the "C" word are mentioned, the staff starts to talk in very loud voices, confusing who is NOT "getting" it.  I feel like telling THEM (and sometimes do) that THEY are the ones with the comprehension problem, not I.  And no, I don't say a word about the loudness until I can see that they could care less about learning anything about these illnesses.  You'd think that after going to the same two hospitals for the past 30 plus years, they'd have learned quite a bit by now, but that is definitely too much to ask for! 

At any rate, the ER visit after the festivities around my bed (because I was too sick to make it downstairs for either Christmas Eve dinner or Christmas Day dinner) we needed to have an ambulance come out to "fetch" me to the hospital.  The men were nice enough, but insisted on seating me in a chair they strapped me down into with the consequence being that my BP kept falling down into the toilet and the men had no way of hearing it at all.  (They didn't see the humor in my "Oh, I must be dead!" joke, humbugers that they were.) They minded me not one iota when I tried to explain that if they could just pitch the chair to at least a 130 degree angle, I wouldn't be getting sicker and sicker with each step and that they might then actually be able to register a BP reading.  By the time I got to the hospital, my BP was on the other end of the spectrum, high out the wazoo (for me) all because of the sitting up part of the adventure.  They've also obviously never heard of POTS or Orthostatic Intolerance.   But they were at least NICE, which is something I always cherish since "niceness" just isn't done much these days, anywhere, anyway, by anyone, or so it often seems.  

But it's time for the Tidbits part of Friday, so on with those bullet points we've all become so fond of (I hope):

• In trying to reason out why things went so well on the ER front, I finally figured it out, though it took me a few hours once I got home. (The brain's always the first thing to go!)  The very first nurse who attended me was a guy I used to know, the carpenter who'd done quite a bit of work in our house decades ago.  He's always been very quiet and reserved and I think that this new job suits him well and vice versa.  Anyway, he was my first nurse when I arrived and didn't insist on taking my history, seeing how ill I was, willing to wait the two minutes necessary for hubs to park the car and get to us.  Sooo refreshing!  Upon seeing him, I said, stupidly and goofy enough, "are you my G?" and I think he might have been the charge nurse for the early AM hours.  I absolutely believe that he set the tone of the visit.  He didn't yell as he spoke, but was quite quiet and would kindly ask others to lower their voices (gasp!).  

I think that just as a nurse can put a negative spin on how and what things happen as a result of their reportage to the subsequent doctors who see you, while others put a positive spin in their report, G must definitely have put a positive spin on things.  He most certainly knew that I was sick even back when he worked in and around my house and knew that there was no "game" or scam going on.  It's a bit hard to hide or fake illness if you have the same people coming to your house on an almost daily basis for a year plus.  So, I was very lucky with the ER this time around, no snippiness or outright hostility going on by any parties involved.  And I was given pain medication which helped me A LOT.  For the first time, getting a CT Scan was a problem, until they pumped me of something that made me sleep very nicely, thank you ever so much!  Oh boy, how I wish I had access at home to whatever they gave me: it worked well with giving me pretty refreshed sleep, certainly better than I normally get with my very best sleep.  Anyway, onward...

• I've resolved that from now on, we are going to be realistic and understand that my ER visits can happen very quickly and, truly, with little warning.  So, I'm packing a small duffel bag (or some such) to be put in the front hall closet along with a few necessities.  Now, what kind of necessities could possibly be needed for an ER visit?  Ummm... earplugs and eye mask are definitely on the list, because if you don't go in with a migraine, you'll certainly  have one well within 30 minutes of appearance, absolutely guaranteed!  The blankets and towels we kept putting on my face to shield my eyes from the light (and why is it that staff has no clue that light hurts like heck when you have a migraine?) made little difference.  I most definitely need earplugs to protect my ears from all the noise that everyone seems compelled to make.  And what IS it with the noise?  Do they think it is their God-given right to make as much noise as possible, thus making anyone sensitive to sound feel as if they are living in one of Dante's rings of hell - and I know that I can't be the only person in the ER sensitive to sound!  When I remarked that no one there could ever work in a library, hubs proceeded to tell me that it's been forever since I've been in a library as libraries appear to be as loud as malls these days.  So again, what's with the noise everyone insists on?

I also always forget to pack shoes (I DO have more important things on my mind if I need an ambulance to drive me all of five minutes away!) and when we arrived at the ER door in order to leave for home, it had started snowing.  So, shoes are a must-have for that bag, as well as Dove soap.  Anytime I wash my hands or indeed any other part of me besides my face, I break out in a rash, so Dove has to be taken with me.  (We're not talking big bags, but enough to also hold my Kindle and iPad ... you never know when I might be inspired to write a post!  Haha!)

• And finally, I happened to mention lamps with toggle switches last Friday (see link here) for easier access to turning off your light at night, especially if you are an insomniac. (Plus see one viewer's comment for the touch pad after the aforementioned post).  Hubs actually found the lamp I needed once he read my post and so I'm happy on that score, blissfully so!  But now we have the whole nightstand issue.  I realize that if you're in bed 24/7 and get out very rarely from that sumptuous bed, then there's often a problem with the nightstand.  Mine was beautiful but completely impractical, so I'm borrowing the guest bedroom's nightstand, which IS perfect, until I can get one that goes better with the furniture in my bedroom.  But  after huge consideration and thought, here's what I think makes the "perfect nightstand":

• Drawers not too wide as then it's difficult to pull any out one of them from any angle when you're still lying in bed.  I like a nightstand about 24" wide.
• Drawers need to be tall enough to able to hold a box or boxes of your prescription bottles and other tall necessities.     
• Drawers should not be too deep or you often lose half the paraphernalia you need to slippage alone, to the back of the drawer each time you open it.  (Can we spell "frustrating"?)
• I like a nightstand that can hold two lamps.  One lamp is for a higher wattage for seeing things in the room.  The second lamp is only 40 watts and I turn it on as a signal to my brain that we are now preparing for bedtime.  Of course, the signal doesn't usually work, but it gives me a fighting chance at least.  Without it, I'm doomed. 
• I also like having more than just a small clock on my nightstand, but a radio/CD player/thermometer so that when I start sweating (many times daily) I know if it's me that is hot or cold or if it's the room.
•  Finally, I also like to have a pretty, opened box on the stand where I can put my lip balm, floss, notebook and pen, as well as other little necessities.  When I figure out how to deal with the cell phone, numerous pairs of eyeglasses, drinking glasses and the TV remote with any amount of success, I'll let you know - in other words, when pigs fly....there IS no solution that really works! 

And so it goes.  I hope that everyone's doing their absolute best, only better.  I hope everyone has a wonderful weekend.  And finally, I wish everyone a Happy New Year, with all the best of everything.  In case we don't get a chance to "speak" before 2013 comes around, I wish every single one of you out there ever so much great health, success in all you do and, most importantly, much love in your lives.  Ciao and paka!


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