The Scoop on Finding a Great Doctor

"The good physician treats the disease; the great physician treats the patient who has the disease."
                                                                                                 -Sir William Osler

I often get inquires from various sources asking how one goes about finding a great doctor.  Let me assure you that soon I'll find myself in that same position as well and I absolutely dread it.  After all, I'm in a pretty good situation, doctor-wise, for the most part.  (It took me long enough!)  When we moved to our "little town" - with it's freakish excellent medical care and a long story as to how THAT came about: for humanitarian reasons I'll spare you.  My doctors were, on the whole, about ten years older than myself.  Now it's time for that crop of doctors to retire and it scares me for many reasons.  Recalling how I went about building my arsenal before, and in thinking about what will soon be, I've come up with some tips as to how to go about trying to find those "treasures" out there.  I hope the following tips will be of help.  Here we go: Drum roll please!

• Probably familiar to all is the referral from a TRUSTED family doctor who knows you as a person, not just as a number or a disease and knows the "inside story" as to who's "good" and who's not so good.  This came in handy (understatement!) when our daughter became so deathly ill.  We trusted her local GI man but he said he wanted her to be at the other, farther away  "major medical center" when her colon blew (not IF, but WHEN).  I was shocked because we had already discussed that as a vague possibility and that she might need to be sent off to a city an hour away from us and one always hears about it on the news.  But he was adamant about her being a MMC 3 hours away, because, he emphasized - looking me straight in the eye with no joking about - that he wanted her to be known to whichever surgeon would be doing the inevitable surgery when the "unthinkable" happened.   He wanted her to be known as so-and-so, who loves music, teaches children with severe autism, loves to travel and so forth.  He most certainly didn't want her to be patient number #24601.  (Did I accidentally assign my daughter Jean Val Jean's number?  I think so!)  And how right he was.  Her to-be surgeon saw her at least once a day with his "fellow" seeing her, separately, once a day as well.  She was well known when she was rushed to emergency surgery when that sucker blew and we were all so thankful to her GI who had such wisdom and courage to demand she go to the "best place" in the US.  Furthermore, when *I* started to "negotiate" for bits and pieces of her colon, my daughter calmly said, "nah, take it out!"  She had THAT much confidence in her surgeon. (I'm sparing you the screaming in pain that went on with that "nah, get it out" bit.)
• "Nothing succeeds like success."  Word of mouth from family and friends can be extremely valuable.  You are looking for a doctor who will treat all of you, not just an organ or a hormone level.  If someone you know and trust has had great results consider going to that doctor for a work-up and treatment.  (See the Osler quote above.)
• Do your homework.  You want a doctor who is extremely competent and with excellent credentials.  Make sure that the doctor is board-certified in his particular specialty and if possible, credentialed in pain management by the American Academy of Pain Management or certified in Pain Medicine by the American Academy of Pain Medicine.  That's a good start.
• Make sure you investigate your prospective doctor's office policies ahead of time if at all possible.  Get a feel for how long the initial visit will take, how much actual face time you will have with the doctor, whether a nurse practitioner or a physician's assistant will be involved in your care (instead???), how much the visits will cost, and whether or not the doctor accepts your insurance coverage.  I've found that there's nothing worse than going to a specialist and finding out that there has been a bait and swich. You want to see the doctor you plan on seeing, not someone who was simply trained by that particular doctor.  Worse, you want to see the doctor you plan on seeing and not be shoved off to a physician's assistant.  I don't have a problem with PA's and so forth if 

• it is a minor matter and not for my CFIDS/fibro/endocrinological/neurological, etc, care 
• I see the doctor whom I've dished out a lot of money to see and traveled a long way to help me.  Some of you would die of horror if you know which doctor did this to me. 

• You want to make sure that an initial visit will be long enough to deal with your problem in great depth.  I see my GP for almost an hour each time, which is why he always sees me at the end of the day, knowing how complex my case is.  (OK, he also like to rattle my chain, but that's a small price to pay, especially since I like to rattle his chain as well!)  My endocrinologist's office assistant is upset with me, I think, because the endo spent at least a hour or so with me this last time; remember: he needed to deal with my usual HGH problem, the new hypothyroidism problem and the reality of having had gall bladder surgery and what THAT was doing to my hormones.  Furthermore, since things weren't going well with the thyroid and I am/was convinced that we are on a "Hunt For Red October"*, we needed to make a plan as to how we would proceed.  *I* was ready to scream "uncle" in order to get out of there, but there was a lot that had to be gone over.  And finally, my rheumy takes between two and four hours for an initial visit, but then he sees what I call the "train wrecks."  I hope this gives you a good guide for what is reasonable and unreasonable.  Hint: 20 minutes is absolutely unreasonable for a big problem. In fact, if all you get is 20 minutes with the doctor, you are being cheated - get out of there fast and find someone else, pronto!
• If you are complex and require a lot of time with the doctor, make sure that enough time is allotted for him to evaluate you thoroughly and for him to answer all the questions you have.  This is especially true when you consider that you don't want the doctor to allot x amount of hours, or x amount of minutes and then feel as if you're getting the bum's rush because he has a waiting room full of patients yet to be seen.  If  you are a complex case, you might let the receptionist know that you are going to need a lot of time.  If the answer to your question as to how much time does the doctor spend with you, total, is minimal, run - fast! - to another doctor. (This is experience talking here, not just run-of-the-mill hypothetical situations.)
• Do NOT go to a doctor ONLY because he is in your insurance company's network or he is "preferred" by your third-party carrier.  All too often, this doctor will unintentionally short-change you because there are quotas which need to be met and all sorts of corners which need to be cut when you have a third party, all because the bottom line is at stake. Third-party payers come between you and your doctor. In my humble opinion, you get what you pay for, but there AREexceptions to the rule.  Our family has made sacrifices and continues to give up a LOT of things in order to pay my doctor and medicine bills.  Priorities need to be made.  Our family's priority is the best medical care we can find, especially for me, since I have a 38 year history and a LOT, LOT, LOT of baggage.
• Make sure the tests your doctor orders or does not order, are based on your doctor's clinical judgement, NOT because he is being pressured by the insurers or the government when it comes to making these decisions.  In other words, will the doctor fight for you or kowtow to those higher up the ladder.  When I had my tonsils taken out, it should have been an in and out thing.  No biggie.  However, I couldn't swallow anything at all, be it from the infamous ice cream to my own saliva.  My ENT surgeon fought my insurance company tooth and nail for what turned into a 5-day ordeal.  But do you see how you need someone who WILL take on the system?
• It's a great idea when the doctor wants your records sent to him in advance so he can review all before you are seen.  This doesn't insure that he WILL indeed read all beforehand.  I was furious when I realized that a certain so-called specialist read my very complex history (which took a huge effort on our part to collect and put together) as I waited for him in the waiting room. And he still managed to get facts wrong in his follow-up letter.  Scary!  But see if you can ask around and find out if the info sent beforehand is indeed read well ahead of time.
• Be prepared to pay out-of-pocket for the care that you need, no matter how complicated your case is, or especially if your case is complicated.  Oftentimes, several patients who have the same diagnosis require vastly different treatments based on the unique characteristics of each patient.  Don't be bamboozled by rhetoric that suggests that a treatment will work for you despite evidence to the contrary.  (See link for the scientific method.)
• This is not the time to be politically correct.  A good doctor does not mind a frank discussion concerning your medical problems and he is not offended if you tell him that a treatment approach is not working.  If the doctor you have chosen gets haughty and defensive after you communicate with him honestly (and respectfully) find another doctor.  (Then see steps the steps above!)
• When you see your doctor for the first time, try to be on your best behavior. This might sound insulting, but you'd be surprised at how rude some patients are. Newsflash: Most doctors would be happy not to see another fibro and/or ME patient ever again.  Hear me: EVER!!!  Let's face it, just about every other type of patient is easier to treat than we are. 
• Too many of us who have CFIDS/ME/CFS and fibo, have a chip on their shoulders for various reasons: divorces, bad doctors, loss of jobs, financial concerns, a huge amount of pain and so forth.  Don't take it out on the world and don't take it out on your doctor.  Now if your doctor messes up with social niceties, and does a rotten job to top it all off, THEN I can sort of understand a bit of "speaking up." But try to remember you'll catch more flies with honey than with vinegar (sorry about the cliche).

And finally: don't give up.  It is your life, fight for it.

As always, hoping everyone is feeling their best, only better.  Ciao and paka! 

(Note: the sweet dog pictured above was a "healing dog" part of the "major medical center's" program to visit those who'd had surgery. More on that later if you wish to hear about it. There IS a funny story involved.) 

Five Quick Tips for Caretakers...

You want attitude???

What is it that those of us who have fibromyalgia and/or CFIDS/ME/CFS need when we are at the end of our ropes?  Well, since you're probably dying to know....

I thought that for humanitarian reasons only I would list a few tips that might end up keeping someone from killing a "loved" one.  At the very least it might promote family harmony.  In fact, it might be a good idea to enlarge the font from this post, print the tips up and tape them up around the house in numerous places.  I suggest at least one sign per room but you be the judge.  Some people require a lot of reminding.  Oh, I'm not naming names....  As I said before: this is purely one of those spontaneously generous things I'm in a mood to do tonight. (Good heavens, I do so hope you are in a state where you're not sure if you should laugh or you should cry!  And I do so hope that this is at least marginally more humorous than Seth Whatever-His-Name-Is, the guy who hosted the Oscars this year.)

With that, a drum roll please!  

• No surprises: we have enough surprises in our lives.  Every day we have something fall apart in our bodies or something that breaks in our homes and needs to be addressed.  Our lives are often nothing BUT surprises.  So, please don't do us any favors and try to make us happy with even more surprises.  We'll let you know what we want/need. (Note: WE, however, are allowed to surprise YOU!)
• Remember to "water" us!  If we get snippy, all too often it's something like our sugar levels or blood pressure dropping - or worse, it's already dropped and we're suddenly miserable.  We can't think when this happens.  YOU, caretaker, CAN!  So, remember, we need water!!!!!  A LOT of water.  (Basic Fibro & CFIDS 101.)
• Noise reduction: we cannot tolerate noises.  If we can hear the soda can pop in the kitchen on the first floor from our beds on the second floor what makes you think that we can't hear crashing pans or dropped things down there?  You don't think the squeaky wooden floorboards are NOT going to drive us bonkers?  (JUST a random example!)  Get your act together.
• Stop changing gears on us! If we are watching TV and the darn cell phone rings, do you really need to answer and talk to whomever?  Can you not tell people to hold off calls for a set hour or two?  Don't come by and "pretend" you're going to spend time with us if you are answering phone calls every five minutes and going into a lengthy conversation.  If you need to talk, leave the room and DON'T come back because that is changing gears again and we've already established that changing gears is very difficult.  So stop it.
• Don't leave us out "of the loop."  Do you have any idea how much it hurts to find out that there is important - and even not-so-important - "stuff" going on in our family's lives, decisions being made about finances, priorities, etc., and we aren't being told because "it might be too much"?  We already have so little control in our lives that when you leave us out of the loop you are making us feel even less in control of anything and this behavior is completely demoralizing and demeaning to us.  We count and we DO still have a brain.  It just happens to be a brain that is slower but it's basically as sharp as ever. (Studies have shown!) We even have good instincts, if you think about it.  (My instincts tell me to let you know that if anyone in my family suddenly keels over, *I* didn't do it!)

And that's it.  As they said back in my day: put THAT in your pipe and smoke it.

Caretakers: do you want to survive?   

Those who are sick: give this to your caretakers.  They do a lot FOR us, but there are days when all of us are not sure it's worth it.

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


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4 Fibromyalgia & CFIDS/CFS/ME Tips

Try to spend time with those you really love!

Today I bring you four commonsense CFIDS/ME/CFS and fibromyalgia tips some of which are actually helpful for all people, not just sick ones.  

This comes to you by way of my rheumy.  

• Blame your doctor: I love this because it's one of the best things you can do for yourself when you feel as if it's all too much.  That's why you're paying your doctors: to get help of all sorts, from physical to mental and spiritual, I dare say.  And if your doctor is worth his salt, so to speak, he WILL have told you these tips. Furthermore, you simply tell yourself that you not only have permission to do the following, but you have been ORDERED to do the following:
• Don't overdo it when you feel great/good.  Let's face it.  Most of those ill with the DD were over-achievers in their previous life and so it goes against every part of our being NOT to do all we can on a "good" day.  It makes us feel great when we accomplish anything.  We're "doing-it-all junkies" is another way to put it.  We also feel guilty when we don't accomplish those things which we think are on the top of our endless lists. So, keep in mind that on a good day, don't overdo it.  And yes, I realize that I'm very bad in this department.  
• Don't starve yourself when trying to lose weight; nutrition is so important.  I think my rheumy gets most upset about this one because his patients are overwhelmingly women.  And what do women always try to do?  Lose weight.  This is especially true because we are often on medications which make us gain weight, be it because we're always so hungry or because the medicine messes up our metabolism.  But he sees women doing great harm to themselves because of the weight issue.  So, try to take off weight carefully and in a smart fashion.  Once the vitamins and nutrients in your body are depleted, all sort of problems enter the picture.  Furthermore, those deficiencies often take years to truly recover from.  B-12 deficiency, for example, takes two years for full recovery.  The numbers on tests may become normal relatively quickly, but that doesn't reflect what is happening to the actual cells.  Here is where you need to be patient.
• Avoid toxic people.  We have enough problems in our lives and we have enough conflict about our illness even being real to begin with.  Do we really want to add toxic people to the equation?  Your time and energy are already limited.  Do you really want to waste precious health credits you've accumulated on people who poison you with their attitudes and passive/aggressive ways?  You know who they are.  Cutting them out of our lives will lessen the stress load.  Now I don't think you should say, "get the heck away from me you windbag, you blowhard."  Simply be conveniently too busy with things that really need to get done and spend your precious time with the people who bring you up instead of bringing you down.  

So, there you go.  Right from my rheumy's (and GP's) mouth.  Very obvious truths, but oh so hard to live them, I know. 

With that I say, I hope everyone's doing their very best, only better.  Ciao and paka! 


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My Mantra For Christmas Survival

My newest philosophy in life?  My newest "take" in order to not drive myself crazy?  My mantra, now - THAT IS, when I can actually remember to use it?  Tada (Drumroll, please):

"Will it matter in five years?"

And really, there are so few things which will.  However, if I don't think this, just about everything in my life that I can no longer do takes on epic proportions.  Worse, the things that DO matter, do NOT get done.

For example, each Christmas Eve and Christmas is about the same as the other.  There is a tree, and yes, most years it looks so perfect that people often think that a professional decorated it.  I'm too embarrassed not to have the perfect live Blue Spruce with absolute treasures adorning it.  Then there are the presents that cover half the floor of the room.  The hall, staircase, mantles are beautifully decorated with garlands, angels, lights.  I have my Santa collection.  Each sofa and armchair has stunningly gorgeous embroidered Christmas pillows.  The foods at the table are basically the same, year in and year out.

And yet, we manage to NOT take pictures of the table and tree with us involved with the seemingly endless activities of each year.  Yet five years later, I don't care what the presents looked like before the kids went to town ripping and casting paper and ribbons all over.  Five years later, I want to see what my kids looked like at ages 5 or 10, 20 or especially 25.  The tree and the table look more or less the same each year, but we, the family members don't.

I knock myself out, cooking and baking for a week (literally!) for the traditional Russian/Ukrainian Christmas Eve dinner with its 13 traditional vegan dishes, but am so exhausted by the time we sit down at the table that I look like a bag lady.  Consequently, there are few pictures of us on the actual day because hubs and I look like we need some emergency care, and quickly, PLEASE.  We can't be bothered with dressing up a bit.  I can care less about putting on a bit of makeup, much less getting out of my nightgown and into something which makes me resemble someone approaching human.

By the following day, with Christmas Day dinner, we look as if someone has tied a rope around our corpses to keep us in the chairs in order to fill in the numbers at the table.  No one's dressed up - it's just too much.

And yet, five years down the line, I want to see what the kids and hubs looked like.  I'd like to see us dressed, if not in our finest, then at least not in rags!

So, this Christmas, perhaps I can convince everyone, let's apply the five-year rule.   It'd be great to see ourselves actually eating the Christmas Eve kutya we spent enough time and energy making!   It'd be nice to see ourselves actually eating the Christmas turkey we spent so much time cooking.  And Really, do I need to make five or six different desserts?

Yep.  I think that five-year rule should definitely be applied to Christmas.  Furthermore, it doesn't apply to just those of us living with CFIDS/ME/CFS and/or fibromyalgia, or any other person suffering from an illness.  It might actually help healthy people stay that way!

As always, I hope everyone is doing their best, only better.  For those who celebrate Christmas, I wish you the merriest of Christmases, full of joy, the best of health (only better!) and a life full of love and loved ones.  Ciao and paka.  

Merry Christmas!

Friday Tidbits: 10 Beauty and Hospitalization Tips

Considering that I'm in the hospital today and, at the very least, tomorrow as well, I thought I'd address a few hospital tips for those with CFIDS/ME/CFS and fibromyalgia, for a more "successful" stay.   Yes, I'm trying awfully hard to get this "Friday Tidbits" going and on schedule to boot!  Ah, what dedication!  (Ah, what boredom and a bit of nerves as well, I freely admit!)

1. Bringing earplugs with you can be heaven-sent if you are sensitive to sound.  I finally found a brand and type I love, Mack's "Dreamgirl Soft Foam Earplugs" (available at drugstore.com).  Normally, I feel earplugs are too uncomfortable to bother with, but these are really unbelievably comfy.

2. Eye masks are great for light sensitivity since it's never really dark in a hospital. I found a pretty generic type and for the first time ever, I'm not only able to tolerate it, but actually enjoy wearing one, even at home when I happen to finally fall asleep during the day. This is truly amazing since I hate most things on my face. I bought the "Body Benefits Satin Sleep Eye Mask," at drugstore.com.

3.  In my down time, to deflect from not sleeping and to try to ignore the pain, as well as the dreaded surgery to come (let's get it over with NOW is my feeling!) I've started in on my DIY facials, much like the long-haul flight treatments I discussed when flying out to Malaysia. I'm doing a good cleansing - hitting those pores and hyperpigmentation with everything I have! - along with exfoliation, treatment masks, serums, and other treatments like SkinCeuticals CE Ferulic Acid (see this link for my reviews here and here ) with moisturizer or Liquid Gold without moisturizer.  I'm indulging in the Sisley Express Flower Gel Mask, as well as my personal Hall of Famer, Elemis' "Papaya Enzyme Peel Mask" - not all at the same time, of course!  In other words, as I wait, I'm doing "the works" and enjoying "being a girl."   Who knew a hospital could be used as a spa???

Of course, I'm sure that later today, post-op, DYI's will be the last thing on my mind but as I stayed up all night with my usual insomnia and my out-the-wazoo pain, I'm trying to have some fun and trying to keep my patience to whatever maximum I'm capable of, which is, and always has been, almost zilch!  I've already experimented with one round of makeup and may be up for a second round if I get too bored and can summon the energy to go there again.  Actually, I'll try just about anything to make the waiting time go by faster!  And with the micellar water, it'll take just seconds to get any cosmetics off for the surgery once a slot becomes available.  (Yes, I'm shallow, but sooo easily pleased!)

4. I'm happy with myself and annoyed with myself, both.  I'm happy in that I managed to put quite a few mini-sized products into a "travel bag" but was more or less haphazard about it, knowing there'd be no real chance of a vacation any time soon.  I hadn't anticipated hospitalizations, however.  (Where IS that so-called brain of mine?)  So, after I was settled in my room, hubby made a mad dash home with an extensive list and had to scour cabinets and drawers for certain products and clothing, electronic devices, chargers.  You'd think I'm in here for, at the very least, a two-week stay!  Thankfully, he didn't need to start from scratch, but it was still quite a scavenger hunt.  The real basics were there, however, in one place, so, hallelujah!

5. I love flip flops for hospitals.  They are easy for "on and off" and afford more skid-free walking than slippers or those socks with "grips" on them.  But don't go for the real cheapo kind which are harder to walk in and cause any number of problems, such as blisters.

6. Try bringing a notebook: they're great for all sorts of things!  For example, I like to keep track of my vitals, even how I'm feeling. I should, actually, list symptoms but that's just so beyond me at the moment. Back to my "vitals," I came in on Thursday with a BP of 90/45 but am now, on Friday very early morning, at an unheard of - for me - 145/90 and 142/98, due to the pain factor.  If I hadn't written these numbers down, I'd question my memory, and rightfully so, because of fibro-brain.  I also make lists of questions for doctors and nurses, which meds I'm given and when - ESPECIALLY my pain meds - and who my nurses are/were because inevitably someone will ask me, somewhere at sometime about something saying, "well, who told you THAT?" and I have no clue.

7. I like to bring a bunch of my own washcloths and hand towels, and in colors other than white.  The washcloths and towels that hospitals carry abrade the skin all too easily, or bring on rashes and even hives.  So, I bring my own and in order to not lose them, in a color as far from white as possible.  I use a hand towel to dry my body since do you REALLY need a bath towel?

8. I'm loving those sponges on a stick which are used to moisten your mouth and lips - no water allowed, now going on well over 48 hours so far, and ice chips monitored closer than any restaurant chef with his precious truffles!  I think I'll try to get those for home use as well since the various lip balms I have are simply not enough.  Perhaps these little sponges can work synergistically with lip balms?  One can only hope!

9. Micellar Water, especially my beloved Bioderma, is a life-saver if you can't get out of bed for a good facial cleanse. I wash off the Bioderma with a damp washcloth and then put on a serum followed by a treatment (anti-aging or hyperpigmentation, for example), followed by a good moisturizer.

10. Since the air is so dry, I'm also using a "water-in-a-can" such as Evian or Avene. Its fine mist helps a bit with the very dry eyes I have going from so many pain meds, so every little trick helps!

So, there you have it!  I'm not sure when I'll be back since so much depends on how the surgery and recovery goes, fibro-brain the biggest concern, of course! Hopefully, I won't have too much down time - I wouldn't want you to miss me too much! (Joke!)

Wishing all a super weekend with everyone feeling their absolute best, only better. Caio and paka!

Friday Tidbits: Coping and Thriving

OK, I know that I can be strange at times, indeed very strange. That's what this dreaded CFIDS/ME/fibromyalgia life experience has done to me.  But I'm here to pass on a bit of that strangeness, which actually are survival methods, to the current generation, sort of handing off the baton, so to speak.  Make of it what you will.

• "Mind-games":

I got to the point where I was starting to go out almost NEVER.  Going to the ob/gyn was about as exciting as life got fired up around this period.  The coping mechanism/mind game I came up with, especially as I had a beautiful closet full of incredible clothes, was a bit unusual.  

On the days I felt well enough, I'd hang out an outfit on the outside of the closet door at the foot of my bed so that I felt that in some way I was still indeed a part of the world and could actually "enjoy" wearing my clothes the easy way: clothes had become difficult to wear because my skin and nerves were just that sensitive.  

It sounds crazy but I didn't even realize what I'd been doing and it helped me survive one of the worst period of my 38 years with this nightmare.  I most certainly hope that I'm not the only person in the world for whom this sort of "therapy" worked?!?  (And do I get extra points for unique thinking?)

• Attitude: 

I find that at times the smallest, unnoticeable and innocent act can throw one over and mess up carefully-conceived plans.  I had moved my son's old room armoire katty-korner to the wall and that tiny detail gave the room a completely different look and feel.  However, not too long after, a young lady was helping me with decluttering the room, as well as other rooms, and in her enthusiasm, she took it upon herself to turn that armoire back against the wall to it's "original" (read "boring") spot when I was busy elsewhere.  

I'd been making great strides with that room.  However, because it took so much energy and psych'ing myself up for this project, it took just the smallest "negativity" to make me feel as if I were a balloon that had been popped and the air was escaping too quickly, just like my hard-earned resolve.

From now on, I must try to impress upon my family how important attitude is.  They are supportive, yes. However, although they understand, somehow they do NOT understand how difficult it is for someone like me to do anything at all. Though they understand how ill I am, they are somehow unaware that a look with a puss on it's face or innocent words such as "Ugh!  I'm just so tired" can undo any "health credits" I had so carefully worked on building up in order to do a small project.  And no, two years later, that armoire is still in the "wrong spot" and the room is still a mess.  I may put this room on my to-do list this weekend if we can manage to stay healthy!

• The Lists!:

Time gets away and before you know it "C" is coming up - soon (cringe!).  Well, while channel surfing a few days ago I saw a couple trying to sell their house.  The important thing is that after a not-so-fantastic house appraisal the news station gave the couple a to-do list to be completed within 48 hours.  I saw that list and drooled!

That's it!  I'm going to start writing a list of things that MUST get done during the weekend, but very easily obtainable goals and not put down "peace in the Middle East" as a weekend goal.  However, taking in the potted tropical plants into the house for the winter and decluttering 15 items of the obviously no-longer-worn to donate is, I believe attainable, and will be on the list. 

And so you have my Friday Tidbits!  I do hope this list will be a good inspiration to some, or at least a great chuckle!

Here's to everyone having a fantastic (and productive) weekend.  I most certainly hope that everyone's feeling their very best, only better.  Ciao and paka!


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

Note: above image from Polyvore.com and pinterest.com.

My First CFIDS/ME Triumph

First day of school for all three munchkins: do they look capable of doing funny things with the lunches packed for them?  (YES!)

Ahh!  It's another challenging time of year for most parents and most especially for most of us in the CFIDS/ME/fibro community.  Today is the first day back to school for many.  As is usual in this country, some parts have started, while in other parts it's only the teachers who are going back and it'll be a few more days before those fresh faces show up, some eager, some not so much.

Each year was different for me too.   Some years I loved going back to school: I loved the cleaning of the slate and starting with the new notebooks, the new pens and pencils. Other years, weren't quite so much fun.  As a mom, once my health started to really interfere substantially with the running of my "self" and I needed to suddenly buy all those new things for my kids and was already having a hard time just getting those kids off to school each day, making dinner each night, plus doing the laundry and the trillion other things a mom does each day while trying to be perky: it was really hard to do it all with my ever-increasing migraines, my unpredictable hours because of the severe insomnia that was really getting out of control, the brain fog getting worse all the time, etc., etc.  (Ahem: back to Happy, Happy, Happy!)

To defeat this every-growing CFIDS/ME/fibromyalgia monster, I started to try to think of tricks that would help me get through each day: my life was turning into one where I was living hour by hour - day by day would have a been a lifesaver, too much to ask for anymore.

So, here are a couple of those tips that I can jot down for anyone needing them, ending with my best one - the game changer - for last:

• First: I organized each outfit for each child in each child's closet by day, with an 8 day supply.  For my daughter, for example, I'd hang out her dresses or OshKosh B'Gosh overalls with cute top to go with it, with the shoes and socks in a box under the clothing rack.  Each day had a plastic ring that I attached to the rod and on it was the day of the week the outfit was to be worn.  To make it more fun, my kids and I would periodically go over what was to to be worn, so that I didn't appear to be such a dictator.  Of course, there was one period when my daughter did decide she was going to dress the way SHE wanted: I let EVERYONE know that what she was wearing was not my choice and was so surprised to find out that everyone with a child my daughter's age already knew it because they'd gone through the same horrific stage.  Misery does love company.

• Secondly: Watch what your kids are doing with their lunches!  I admit it: the kids had a couple of years where they had the most atrocious lunches because hubby was in charge of them and I was too far gone to have done anything about them.  We even got a letter from the school saying, "can you please send nourishing food in the kids' lunches?" at a time when no one worried about fast foods and how bad they were for you, but I had always been a "food nut."  We were puzzled.  Yes, the lunches that the kids went out the door with were bad, but not bad enough to warrant a letter from the school where real crud was served: pizza, tacos, etc, on the days that the school mom volunteers tried to do a once-a-week hot lunch.  Well, we've been learning in the past few years exactly what had been going on: apples that were hidden and recycled each day is just one example.  Further I refuse to go (ie, listen to the kids brag about the scams they pulled over our eyes) as the pictures that the "kids" now start to tell me brings out despair and nausea or just make me want to go into a coma, never to get out again.  It's all a matter of "whaaaaaaaat??????" Scary stuff.

• Finally, don't feel as if you have to sign up for everything that the other parents sign up for.  I found it hypocritical that at one PTA meeting, the school told us about the new program that they were teaching the kids, DARE.  (Oh, this so dates me: it was during the REAGAN years if I'm not mistaken!)  It was, essentially, to teach the kids to not give into peer pressure to say "yes" to drugs, teaching them that for many reasons they should dare to say "no."  All of this was happening while a bunch of sign-up sheets were going around and the parents were essentially being bullied to sign up for every activity from that day to the end of the year as a volunteer.  And mind you, the peer pressure was ENORMOUS. 

Well, it was one of those days where I had run myself ragged already with carpooling, running a million errands during the day and had really pushed myself to make it to the PTA meeting at all, where, for some ODD reason, I thought we would hear about the school plans (like DARE) for the year, what was expected of the kids that year, the school philosophy, yada, yada.  Instead it was all a con game to get those of us gullible/stupid enough to attend to sign up for baking, baking and more baking as well as volunteering to paint the backgrounds for school plays, fairs - we're talking HARD CORE and NO, bought cookies, cakes, etc., were NOT acceptable.  Finally, I'd had enough and stood up and gave everyone there a piece of my mind, saying as diplomatically as possible that the whole thing was hypocritical. 

How, I wanted to know, were we to expect our kids to withstand the pressure of drugs from their so-called friends if our so-called friends were coercing us to sign up for things that we were certainly not able to fulfill?  Furthermore, the kids were not stupid, they would overhear parents complaining about how we HAD to sign up for this and that: we were giving them an example right at home about how hard it is to withstand peer pressure - and we were failing miserably.

The parents and those talking at the head of the library were silent and then after an uncomfortable few minutes, the meeting continued, as if nothing had happened, the sheets continued to be passed along.  Hubby was shocked at my ability to stand up for myself for perhaps the first time in my life in front of a bunch of strangers, in a very exclusive school where both parents worked, the moms lawyers, doctors and such at a time when this was still an unusual thing to do for females.

Well, after the meeting, outside the library, a bunch of parents came up to hubby and me and told us how happy they were that I had spoken up.  I should have been triumphant.  I should have been happy.  Instead I was disgusted with the parents, said something short and sweet to the various parents (like: would have been nice to have had someone agree with me in a lighted room instead in a dark outside area!) and left hubby to deal with the the cowards.

It was one of my finest moments! 

And I did end up volunteering, the way I wanted to, on my own terms, and in the end putting in more hours than many.  Every Friday I would take the 3rd graders in for library hour.  As I became more comfortable with the teacher and she became a lifelong friend, I even ended up spending most of the day helping her out.  But it was my decision, something *I* wanted to do, not something the PTA had forced me to do, a big difference.

So, you see CFIDS/ME/fibro HAS been good for me in some ways: it gave me a backbone and made me realize that I can stand up for myself and it gave me the imagination to volunteer on my terms, not those dictated by MY peers.  It's a good thing to keep in mind as those of you out there go out to a brave new year.

Anyway, I certainly hope everyone's feeling their best, only better!!!  

And at the risk of sounding like the PTA: The Followers Giveaway will be on noon Friday the 24th (New York time).  To get a chance to win, please go to this post and register.  It's all really very easy and will take just a few moments!   Remember I'll mail the winner the beautiful Skyn Iceland kit anywhere in the world that the post office goes!