The Pain Contract

The nuns taught us well how to take care of one another: little did I realize as a 13-year old how important those lessons would become once I had my own family.

Given that I need to see my primary care physician in a few hours, I thought today would be a great time to finally discuss one of my huge problems, pain!

Yes, I, like most who suffer from fibromyalgia, have a TON of pain.  It's just all too indescribable because it is so all-encompassing.  Over the years I've taught myself to try to ignore it.  Of course, how much pain I have is often registered by the blood pressure reading in my GP (or PCP, whichever term you prefer). Normally my BP is very low -90/60 - or thereabouts.  But all too often by the time I get to the doctor's office and the nurse takes my BP, I'm suddenly in the 130/95 range, or even higher by quite a bit, all because of the pain factor.

This is where this wonderful thing kicks in, the "pain contract."  I love it and have been on one since the late 80's.  I've even changed doctors a few times (through no fault of my own, I swear - I see you rolling your eyes at me!) but the pain contract has moved along with me.

Essentially, it's a document intended to reassure a patient and, at the same time, to help the physician maintain vigilance over those patients who need the heavy artillery of pain meds.

How does it work, you ask?  Well, the patient and physician decide on how much pain medication a given patient needs in a given month.  Sometimes there are adjustments to be made, some fine-tuning, but for the most part it is relatively easy to evaluate and maintain.  The pain contract also helps the doctor because there is so much less of a chance of "doctor shopping," and some doctors do require random urine screens to see what is what. 

Given that the state of Ohio is suddenly cracking down on "pain management" because of a few horrid doctors who ran, basically, pain clinics/mills with no physical exams, documentation, histories and so forth, it's been a bit rough for the doctors who are legit, have great training and experience, and are too often found having to open their offices for minute inspection and its rigmarole in order to satisfy the authorities. Consequently, it's not much of a surprise that often in doctor's offices you'll see signs all over, saying, "We Are Not Accepting Any New Pain Patients At This Time."

As I stated earlier, let me make it clear that though I've been taking super powerful pain meds, I'm NOT addicted to them, and it is, basically, a huge myth that one does become addicted: Under keen supervision by a physician who understands pain management and who guides the patient, as well as monitors the patient, nothing could be further from the truth. I am still on the dosage I was on back in the '80's. I never feel any high with the meds, an important point, and I take them only when I need them, also an important point.  There have been years when I've barely needed the meds and other years when I pill-counted like crazy, rationing out the meds in order to help get me to my last refill dose.

I might add one problem, though I'm not sure how it can be remedied.  Just as I need my pain meds the most, I tend to run out.  But according to the pain contract (and the law?) I need to actually see my primary care physician in order to get another prescription.  This is a sort of madness since by then I'm pretty close to the 9 to 9.5 pain level - on a scale of 1-10 with 10 being the worst pain you've ever experienced.  By then I am well into "chasing my pain," and am in no shape to go anywhere other than the "Irene shuffle," going between bed and bath. Lately, even that's been too difficult.

But because this post is a bit long on the "woe is me" side, I'm going to add a few things that I am grateful for:

1. My primary care physician actually "gets" it and though we banter like we've known each other since childhood (we haven't) and agree to disagree on certain things (a veritable minefield) I pray for the man's health each and every day, not just for his sake, but I'll admit it, for mine too!

2. We don't bicker or haggle about how much of my pain pills are enough: he sees me and knows that I need the usual dose, not trying to get me to take any sort of randomly selected minimum. In fact, he's quite vocal about me taking more pain meds, so that I can accomplish more. This is a bone of contention since I think that taking pain meds in order to get things done is a false energy which gets you into trouble in the long run. Taking pain meds in order to get my Be-Hind to a doctor's visit is different from taking it in order go clean up my room.

3. We've come to the age when there are so many ways to go regarding pain management. Whereas in the past things were, let's face it, pretty much hit or miss, today's meds are extremely effective and the way the meds work is better understood.

4. My "first" GP, bless his heart, admitted me to the hospital (back in the late '80's) and was determined that "we" would find a pain med that actually works, since not all pain meds are made equally and different pain meds often take different paths in your system. (YES, THIS IS PRECISELY WHY YOU NEED A PAIN SPECIALIST, especially one who will work with your primary care physician.) All I recall is about 5 minutes of one visit, which is so sad.  My then PCP would stop by my room each day, at least once daily, and we'd spend literally hours talking until I'd remind him he had other patients to see and a wife with two toddlers at home.  But the work he accomplished in that week with a hospitalization would today take months, if not years, because this sort of thing is now done on an out-patient basis.

During that stay, I was given a button in my hand and every time I needed a hit of med (when the pain level was at least an 8, if I'm not mistaken), my finger would hit that sucker.  Though I didn't realize it at the time (how could I when I kept looking at the walls and ceilings and wondering how could I pull off climbing them: desperate times and all!) the reading of how many times I hit that button showed how much the medication we were trying was actually working and when it looked like it was a no-go, we'd move on to the next med.

Morphine, as every other pain med tried, made no difference.  But once I was given Demerol, a medication I'd never even heard of at the time, the magic bullet was found.

So, if you're having unbearable pain, pain that just isn't being helped by anything, think about the following. Some may be obvious points here to some, but hopefully something here may help, may resonate:

• a pain contact route IS the way to go; 
• ask for a complete work-up with pain management there to help.
• be sure you know who - i.e., which hospital - you're being transferred to in the middle of the night. When I mentioned Demerol for my daughter, hoping for a bit of a pain break or a lessening of pain for my daughter from meds that were clearly not working enough, you would have thought I'd asked the CEO of the Center to run up and down the hallowed halls buck-naked.  Yes, they saved my daughter's life, more than once, but the rigidity and constant "staying on top of everything" was a total nightmare, and an unnecessary one at that.  I was told more than once that Demerol was NEVER used in the major medical center, EVER, by quite a few doctors and nurses with their noses in the air and a smug attitude. THAT is just insane to limit yourself from meds that have been around forever, thus tried and true, having been tested for decades?  Can the same be said of the new meds coming down the pike?  What side-effects will be seen decades from now from the use of the newer pain meds?  And did I mention that the cost of Demerol is minimal?

I've run up a post again that is entirely too long and should have been cut down into little pieces, but that's not going to happen! ;)

In fact, I can see myself writing quite a few posts on this subject. If you have any questions, please let me know.  I do have great sources that don't seem to push me away.  Furthermore, having this DD for 38 years has given me a unique perspective.

Hope all are having your best day ever, only better!  Thanks for stopping by!  Ciao and paka.


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Eyebrow Mini-series Returns, Part 4

A few of my favorites from my eyebrow arsenal.

I know it's been "forever" since I wrote a post re eyebrows and I must admit that part of the problem is that I envisioned a mini-series of at most, two, maybe, three parts.  Instead I feel as if I've wandered into a quagmire which I can't seem to get myself out of!  (See Parts 1 here, 2 here and 3 here .) Who knew that eyebrows are such a complicated subject?  Well, other than the cosmetic industry, which is suddenly making billions on all sorts of brow products each year?  And to add to the delay of another brow post was that I was a bit....well, stunned by what transpired. Just as I was about to write another eyebrow post, something stopped me, and FAST!


Things really were coming along quite nicely, if you recall: actually, I had to check on that, just to be sure!  I remember so little from one day to the next, and it's been over a month since we all last "spoke" about brows, a veritable eternity for one tied down by CFIDS/ME, fibromyalgia, etc.


Last all here had heard, I was about to go off to my "beauty place" and getting my eyebrows done was definitely on the agenda.  Alas, the woman who did my brows was not my normal go-to person and I encountered a problem I'd never had before.


If anyone recalls, I'd been using Rogaine for men on my brows (and let's not forget my FIVE bald spots) at first and then changed the brow "helper" to Smartlash.  When the technician asked me what color I wanted my brows dyed, I told her that Lan used black in the past.  I got a "brows up" look from her but I assured the lady that it was the only thing that had worked in the past.  In fact, I decided to take things a few steps further - fool that I am! In order to ensure the job, I asked that not all color be taken off so that the color could work a bit longer on my ride home. (Where DO I come up with these ideas?)


And so, I was in for a sad surprise once I arrived home - with Groucho Marx brows.  For the first time ever, thanks to Rogaine and SmartLash, I had a few more brow hairs and they seemed to have a nicer texture than before. But in the midst of all this good news, the fact remained that the brows had absorbed every bit of color, and then some! I scrubbed and scrubbed, trying to get the dye off my skin at the very least, to no avail. After a couple of days (of scaring myself each time I happened to catch a glimpse of myself in a mirror) I just hoped to tame the color in any way possible yet Groucho did not want to budge!  I wasn't a happy camper, to say the least.  Of all times for my brows to go overboard, it had to be for my son's wedding?  (Murphy's Law anyone?)


Friends assured me that within two weeks the color would have tamed down: it didn't.  My daughter professed to love the color: "how dare she humor me?" was my feeling.  And the shaping was not wonderful as I was so spoiled by Lan: I kept picking a brow hair off here and there, as visions of "don't over-pluck" from sources galore, danced in my head.


I eventually did discover that if I wore enough eye makeup the look improved but we're talking about a LOT of makeup.  One good thing came out of this: I do believe that I am going to try to master the fake eyelashes, though this project is not on my immediate to-do list: I somehow lost my box of lashes and adhesive between the attic and moving back into my bedroom.  (Huh?  How do you lose something like that???)


But getting back to brows.


Somewhere I'd read about Mac's brow pencil and decided to order it and I'm thrilled to say that I love it.  I use the color Fling;  it was perfect and I liked the fact that you don't need to sharpen this pencil.  I plan to get another one for my handbag for a quick job repair when needed.


In duty free, I was able to pick up two Chanel eyebrow helpers: their pencil (in color 50), which I'm also loving and a trio of browshadows, "Le Sourcil de Chanel Perfect Brows" in 10 Natural, which I've not had a chance to play with much as of yet.  But  they look extremely promising too and given how expensive the brow powders were, I WILL most certainly be experimenting with them.  I was told by the Chanel sales lady that first I should use the pencil, then the powder.  I THINK I have that in the right order, but I really need to look it up to make sure.  (Just kidding: I do remember the right order!)


I'n the meanwhile I've made a monumental decision: I need to look start looking for someone closer to home to do my brows - even hair and if pushing it, my lash tinting locally too.  This should be interesting since I haven't had the inside scoop on anything local in at least 10-15 years now.  But the trips to Pittsburgh are just entirely too stressful, with such uneven results that it's a matter of diminishing returns.


Finally, I must admit that I've gone off my SmartLash as well as my Rogaine. In an earlier post, regarding the use and then dropping of Rogaine, I wrote:


"I think my biggest problem is that I'll use it but then something will happen (a flare, a relapse, a crisis) and when life gets back to "normal," I forget all about it.  We've just started moving back into our bedroom and bath and already, as my life is slipping out of control a bit - OK, more than a bit, but more controllable than what's been the norm in the last two years - I'm finding it hard to remember to take my meds, much less remember to work Rogaine into the needed areas of my head."


Ah, how true. But I am not going to be defeated. I have started onto a regime and though I'm going throug a rough patch, I'm sticking to it and adding other "goodies," which I will discuss in the next week or so, so more on this later. 


But I did think it was funny that I knew exactly what happened to my Rogaine routine countless times and yet glad that I've pinpointed the problem because I always say, "knowledge is power..."  I'll be writing a post on this soon, my "health plan" (ha!).


Here's to everyone feeling their best, only better!



NOTE: This is always good for a laugh!  I can't really see the screen.  I can't make out some of the letters at all, others are murky.  And I lost my post and had to return to the first draft of it...  How many hours wasted and for what?  This DD is a barrell of laughs. Ay!  How did I ever think this was going to be fun?  It is, after all, me and the Internet: that is NOT a good combo!  ;)

Showing A Bit of Gratitude

(Note: This was originally posted in July but I'm reposting it for Christmas since I thought it was appropriate, would be helpful and frankly, I'm exhausted!  Hope all are surviving Christmas of 2012)

It's Saturday.  BTW: how amazing was the opening ceremony of the Olympics in London last night?  There was so much "excellent" stuff going on that it's difficult to select even a few favorite moments.  I'm so glad I DVR'd it so that I can go back and see, again, the marvelous display. And I'm  really looking forward to all events equestrian. But Great Britain: you rock!   Great job!

At any rate, yes, it IS Saturday and in order to try to get myself into a better frame of mind (even for a few seconds) after a particularly difficult week (or two or three), I thought that I'd list a few of the things that I should be grateful for and happy with.  Yes, desperate times call for desperate measures.  Understand, the part of me that is my "Russian side" is screaming to me that I'm a fool: "do you want to invite the jealous gods to screw you up even worse; do you really want to jinx yourself?" it asks me, in a bully fashion, yes - but in a very concerned way too.   And these ARE very legitimate concerns, but today, in as scary a motion as I can imagine, I'm throwing caution to the wind and will be positive out loud!

1.  I live in an era - as well as in a part of the world - in which we have so much social technology to enjoy, which seems to be growing by leaps and bounds every day.   Even those of us who can't make it outside to spend time with the world are not completely isolated.  We are living the science fiction of our youth: well, depending on how old we are - and hubby and I are definitely old enough to be doing so.  19-year olds can't quite appreciate how science fiction our lives have become.  Just saying.

2.  It's no longer the '80's.  OK, I know that everyone is most likely thinking, "bad hair," but believe it or not, that's not what I'm going for.  I happen to remember how badly those of us with the mysterious "Yuppie Flu" were treated (and you thought "Chronic Fatigue" was a derogatory term?).  It's still bad today and for the most part, I still don't tell people what is wrong with me, if ever, because the stigma is still so hurtful. The vast majority of people, including doctors, just don't "get it," but at least the medical profession is slowly coming around - finally!  Hallelujah! Things do have a long way to go, but in the words of an old commercial from the '70's, "we've come a long way, baby, to get where we got to today!"

3.  When I get a migraine, the meds actually work for the most part now.  This is such a relatively new achievement that it never ceases to amaze me.

4.  Shopping via the Internet makes it possible to buy just about anything I need.  I still can't believe I can buy deodorant on line now (for example) and so easily with such a huge choice. I can't believe I can get Sisley, a high end French brand.  Marvelous!  Incredible!

5.  I don't need to actually go to the movies (which hurt my ears) in order to see a movie.  When I was in high school, we had to wait almost a year for movies that had been nominated and/or won the Oscar's.  Now, nominated movies are often available for home viewing right before the Oscar's.  To me I this is more amazing than any moon flights, and the astronaut program has always fascinated, so you can imagine what a big deal this is for me.

6.  I have access to medications that would not have been available to me less than 15 years ago, ones that are keeping me alive.  Who could have imagined that a certain percentage of the adult population would need Human Growth Hormone to keep them alive?  Amazing.

and finally, # 7, just because I happen to like the number:

Our hospitals are very clean and efficient (for the most part) as well as comfortable.  We may not be able to stay in them as long as need  be, due to financial hardships on the part of third party-payers - not even if we want to pick up the bill ourselves - but our hospitals are truly amazing.  For the most part, they work like well-oiled machines, though I still strongly believe in having a health advocate for any patient at ALL times (if at all possible).  The beds are pretty comfortable, things are CLEAN (one of my favorite words which puts me in the greatest mood!), many hospitals are in the process of building single-person units due to HIPPA concerns, the nurses and doctors and the rest of the support staffs are, for the most part, kind - and for most part don't have Draconian manners and faces.  Not too shabby a place to be found in, if you have the misfortune of finding yourself actually in one.

Plus a completely self-indulgent #8:  I'm on my way to learning to master that which every kid under the age of 25 can do instinctively.  I'm trying to figure out how to take a photo of myself with my iPhone (do you see how bored I can get at times? Ha!) with no help, no thumb showing up in a corner or on the side (as seen above) and/or the pictures not scanning because they were all somehow photographed upside down.  But despite it all, I DID get a picture of myself: whoohoo!   However (and it's a big HOWEVER) note to self: take a picture BEFORE going to see the doctor, not after a long wait in a waiting room, a long visit, being three quarters dead as crawling back into bed with makeup sliding all over face, though never to the places it would look good!

OK.  That's about all the cheerfulness and gratitude that I can handle for one day! :)

I hope everyone is feeling the best they can, only better.  Happy weekend!


Note: I can't take proofing even one more time...I'm so fibro-brained today that I can't get through this post, one I wrote last night.  I hope you can forgive all the fibro-headedness!  Thanks!

When Will I Be Strong?

Putrajaya, Malaysia, all beautiful at night....

I do have to laugh at myself. You see, as soon as I make a list of things to do, I am doomed. Doomed, I tell you!  Nothing ever goes according to plan.  And if you recall, I actually made a list the other day on how I would start to work my way back to feeling better, fool that I am!

These last few days have been particularly bad days, perhaps the worst I've had in years, bar the first couple of weeks after my November/December surgeries.  I know part of it is the Herxheimer-type reaction: I'm having a huge reactivation of whatever virus caused this stupid illness in the first place, a vicious full-blast reactivation most likely caused by the stress of my trip, and it is, paradoxically, getting worse as I try to get myself back on track to the place where I feel my best.  That's not asking for much, except it obviously IS in my case.  It's all coming at a price.  I feel as if what I'm going through is much like what I've read it must be like when a drug addict tries to detox.  I want to crawl out of my skin.   At other moments, I feel as if my skin is turning inside out.

All of this has been further complicated by the fact that when I get too sick and am in too much pain, I forget that I need to take my pain meds. There's always a price to be paid if the pain gets to be too bad, when you end up "chasing" the pain.  This is so well known and understood that it was THE reason I was such a ferocious lioness during the weeks my daughter was at the "major medical center," so often and for so long: the pain she experienced was off the charts and I knew first-hand how hard it would be to get back to a place of tolerable pain if and when she was given her pain meds even ten minutes late, much less a half hour to an hour late.

So, it's ironic that I forget to take pain meds when I most need them.  Usually, this isn't a problem because hubby comes home, sees me and knows I need to take my pain meds, or my daughter will call, hear something off in my voice, and immediately becomes all bossy-like, instructing me to take my pain meds.  My doctor gets frustrated with me that I don't take my pain meds as often as I should. Deep down inside, I think that a part of me feels that when I take pain meds, I'm accepting defeat, a very wrong way to think, I know!

At any rate, there were entirely too many days in Malaysia when I didn't take my pain meds, after hubby flew home, because I was in too much pain to realize I needed them and then during the various flights heading home it was just so much easier to skip too many doses.  All of which is to say, my body has been chasing the pain big time, and obviously too long.

I need to find/remember all in my arsenal for improving. I had forgotten, for example, all about my nutritional IV's and need to go that route for a while. I need to remember to take my AM magnesium (not in the PM as it counteracts the Neurontin). I need to work harder at trying to establish a sleep pattern, which is also ironic: I'm just too sick right now to work so hard at falling asleep.  To me, sleep is major labor.  I don't have it in me to work that hard at the moment, but I know I must.

Now gee, this was a cheerful post! So, if you've made it this far into my complaints, here are three rather random tips that work for me that I think can help anyone:

1. Consider using an air cleaner in your room. I have been using these for years - but of course had forgotten about them in the last couple of years of our familial insanity. I need to dig one out, pronto. The unit I like to use in my bedroom is portable and I can immediately feel that I can BREATHE. It also cuts down on environmental pollutants, as well as dust, etc.  (The filter is absolutely disgusting when you change it.)
2. Check out your Vitamin B-12 level as well as your magnesium levels. With the magnesium, make sure your doctor uses the RBC (Red Blood Cell) test.  I'll be discussing this in future posts.
3. Get yourself a notebook for lists. Just because I've been struck with the "list curse" doesn't mean the rest of the world has been!

And here's to all feeling the best they can be, only better!  Ciao and paka!

My favorite of all the air cleaners in the house, the Sun-Pure.

Skinceutical's CE Ferulic Acid

In honor of our wedding anniversary today: lots of dancing!

Call me fickle, but I do so love to play around with different beauty products.  I suppose this is what happens when there is little else you can do in your life, although that's probably not the only reason.  My mom, too, has always been keen about skincare.  As a child I always thought of it as a European thing - although because of little discretionary income (hardly any!) my mom stayed with a couple of tried and true products. But I well remember when an occasional package would come in the mail from NYC, with a jar of "something" so exotic and expensive that no one but my mom was ever allowed near the product.  As years went by, I learned that the package would come from from a French-Russian lady living in NYC who made her products in her home and had quite a following in the immigrant communities. 


I always remember my childhood years, too, with my mom's very quick application of a DYI  "mask" of some sort to her face, applying a mysterious (to me) concoction made of honey and an egg yolk left on for twenty minutes before heading out the door for any event, including going to church.  As a reaction to my mom, I never cared for any skincare products but - sigh! - eventually we all do pretty much become our mother's daughters.  


And so, with that said, one of  the workhorses in MY personal supply of "stay as young as possible" products is Skinceutical's CE Ferulic treatment.  Its main ingredients are Vitamin C with a touch of Vitamin E and, of course, Ferulic Acid.  The C is there to clarify, brighten and lighten hyperpigmentation, whereas the E protects the skin from being further damaged by those pesky free radicals.  The Ferulic Acid, according to Skinceutical's PR, "neutralizes free radical activity."


I've been using this treatment on and off for four months now, approximately once or twice a week and have been thoroughly impressed with the progress my face has shown.  My old "freckles" (age spots, mom!  NOT "little flowers"!) are getting lighter.  In fact, it was because of the success of this treatment that I started using other treatments and different brands.  I think I used to believe nothing really worked so, in true "me" fashion, once I saw one product work, I went from seemingly nothing to seemingly everything.  I'm such a product of extremes! (Another sigh: this one for those of us with the DD and know our "all or nothing" tendencies all too well.)


Most importantly, perhaps is that this Skinceuticals product is intended for those who have sun damaged skin which is also dry and sensitive and  for those who wish that their skin were smoother, softer and, that panacea we're all after, radiant. I like it too because it's meant to be used in the morning.   It often seems, to me at least. that most treatments are recommended for evening/bedtime use.  While using this product, however, one absolute "must" is the use a good SPF - unless, perhaps, you happen to be like me and live in some sort of version of Batman's bat cave and never see much light.  On the other hand, I've read that this CE Ferulic and SPF work synergistically - thus one reason for its recommended use in the AM.


After applying a few drops to my dry, cleansed face and throat (I skip the chest since it's just too sensitive for anything) I usually end up putting a moisturizer on after the Ferulic application or a good SPF that also acts like a moisturizing cream, LaMer's sunblock in my case, or a BB cream.


In the beginning, I found that in applying a drop onto my skin, the skin just absorbed the drop without giving me a chance to smear it around.  It was very puzzling as to how in the world I'd ever manage to smear the recommended 4-5 drops all over.  In fact, at first I dabbed a bit of each drop on a targeted area (where the age spots were the worst) and hoped for the best.  Happily, after a month of use I found that the dryness had improved so much that the drops actually did now begin to slide around my face.  Now that's what I call improvement!  


I also have large pores on my nose and I've found that they appear less deep and the skin on my nose is smother, less bumpy when using the CE Ferulic.


So, all and all, this is a product one can't help falling in love with, especially when considering the funky skin those of us with CFIDS/ME/fibro all have to deal with.

Now, since I've stopped eating honey (in my attempt to get my body back on some sort of "good" track) that means that there's a rather large bottle of it in my kitchen; tonight I may try my mom's honey and egg concoction and see if, indeed, it will firm up my skin yet leave it soft and radiant.  Today is our wedding anniversary, so perhaps I should give myself a good facial to bring out the youth in my skin before hubby gets home!  (OK: I'm rolling all over the floor with laughter with that last bit!).


In the meantime, here's to hoping all are doing their best, only better - boy, some days I really do love fibro-logic!  I just hope fibro-brain wasn't too evident in this post!


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Good To Know About Scarred Skin

The Tomboy!

Ever since I put the silicone sheet on my arm, as instructed by my plastic surgeon, in order to minimize the distinctively ugly, and solid 30 inches of scarring - which, incidentally, gives me a rather distinctive resemblance to the bride of Frankenstein - and then had my horrible allergic reaction to the sheet, I've been intrigued by silicone. (Described here: here) 


And my fascination is not surprising - in my head at least - since most cosmetics out there, as well as a pretty vast majority of skincare, has quite a bit of silicone in it.  Since that unfortunate allergic reaction, I've been in a bit of a quagmire trying to figure out which products with silicone will cause a bad reaction and which ones have formulations which don't appear to give me a problem with the silicone.  It all really reminds me of Bayer's aspirin. The chemicals used by Bayer were basically the same as in all aspirins: it was the bark of a willow and its acetylsalicylic acid.  However, it's the formulation, the "buffered" part - which is a secret - that distinguished it from the rest of the aspirins out there, a formulation which allowed for a larger part of the population to "stomach" the aspirin, by diminishing the side effects of nausea and gastric pain, which made the original owners its vast fortunes.  


So, where am I going with this trivia?  Well, it's just that I can't help wondering why it is that silicone is so successfully carried out in some products while in others, not so much.  Each time I buy a new skincare product or a beauty product, it seems as if I see silicone in almost every product out there.  If you tried to stay away from these silicones, it would be almost impossible, and I do try!  On the other hand, I have products that do contain silicone and they don't seem to bother me.  Is this because the products that don't bother my CFIDS, ME, fibromyalgia skin have a different sort of formulation than the ones that do bother?  Is it a case of what happened to Bayer aspirin is now happening in the generic vs brand name medications? (State secret here: generics do NOT work as well as the brand name and I do get so annoyed with my insurance company when I have to fork out the mucho bucks for the name brand  medication or make a judgement call and go with the generic: it's quite the dilemma, though I realize how trivial it must sound: there are people and children out there who can't eat and I'm complaining about generic vs. brand name meds?  Still, when I take a med and it works sometimes and doesn't at others, I know it's because I've been forced to go onto another (inconsistent) generic.  But don't get me started!)


And so here we are - finally! I know!!! - with the subject at hand:  how to deal with skin that is damaged and that we want to prevent from scarring as much as possible.  And let me tell you, I am much more clumsy now than I was before I became so ill.  Part of that is age, of course, but most of it is that when you have an undependable sense of balance, depth perception (because of eyes that don't function the same hour to hour) and just a general feeling that things are "off" in the world, you had better build yourself what I call a "scarring kit."


One interesting factoid I came across in doing research for this post is that if you have stretch marks or injuries that are still pink, there is still time and a good chance of ridding - or at least vastly diminishing - the appearance of scars.  The pink shows that there is still blood flow in the area and that's crucial.  


I've had my fair share of injuries, be it from small surgical scars due to small things such as my appendix taken out, to the ridiculously big, like my latest with my compartment syndrome surgeries, something so nasty that I wouldn't wish it on my worst enemy.


I've also had nature-made accidents, scrapes from gardening, falls from trees as I was (supposedly) growing up, gravel burns and abrasions.  Just about everything, luckily, healed beautifully and I never minded the appearance of scars...as long as none were on my face.  The face: to me, that's sacred and where my vanity begins and ends. I even missed my smallpox vaccination scrape: how did THAT manage to disappear without my noticing? 


But for those of you who do not have a good relationship with your scars, the following may help.  These are my favorites for fighting these sorts of problems:

• Essential lavender oil, neat or in a carrier oil, I prefer the organic high-altitude lavender oil.

By "neat" I mean that a drop can be put right on the skin.  I know that a lot of the literature out there says to blend it in a carrier oil (such as jojoba, avocado, olive), but with lavender I find that putting a drop on directly will not do any harm.  This is a very old-time and old-fashioned "fix."  It's even perfect for burns in the kitchen, for example - and putting it on immediately is key so in our household we have little bottles of it stashed around the house at crucial places, like next to the stove.  My kids, who would rather go without eating for a week than admit that I'm right, have secretly borrowed my "extra" bottles from me, even asking for it if desperate enough when leaving home for an extended period of time.


I prefer to buy the organic, high altitude lavender oil sold by Aroma-thyme here .

• Bio-Oil - a classic that I've only started using since my surgeries for compartment syndrome back in November/December.  

I'm going by the recommendations of others since I'd never even heard of this product before, and my arm/hand is major scarring that will take years to heal, due to both the huge amount of area  and the place affected, so I won't know for years if and what is effective, come what may with my arm and hand.  Bio-Oil is widely available but I happen to buy mine from http://www.drugstore.com/bio-oil-scar-treatment/qxp165709?catid=182889  There are huge fans of it out there, so I use it when I think to.

• HealGel, invented by a team of dermatologists, is a new product and though I'm a bit skeptical about silicones, I use this off and on.   

HealGel is a relatively new kid on the block and has an incredible pedigree: it was developed by five dermatologist and one surgeon in order to treat post-operative scarring, blemished skin and aged scar tissues, keloid scar, as well as the everyday sunburn, bruising and inflammatory skin conditions such as eczema and psoriasis.  I have no hard data for it, only an "eye" for how things appear to work for me.  It's a problem in that I've never cared one way or another as to how I do with scarring - the true sign of a person who doesn't have big issues with healing skin, I now realize. I think it's worth trying, however, because it IS based on science and has such a huge fan base.  Also, my feeling is that if you're desperate enough, you'll give just about anything a try: at least this gel has quite a bit of science to back it up.

• Creme de la Mer and La Mer: the Concentrate are classics.  

These are the number two products in my arsenal, along with essential lavender oil and  the LaMer's have helped me when nothing else has.  The concentrate may very well contain a bit of silicone, I'm rather sure, but is formulated in a way that it doesn't bother me.  For best results, massage the concentrate onto the scar and then "seal" it in with the Creme de LaMer.   I'm not sure if there's anyone on the planet that hasn't heard the story of how this product was discovered: a physicist had set out to correct the horrible scarring he had sustained in a lab accident and after a few years and thousands of different formulas, he came up with LaMer and the rest was history.  It has algae (and I do so love algae for skincare) and needs to be fermented for a few months.  When a duplication of the elixir was attempted by other companies, the results were never successful and so it had to finally be bought by Estee Lauder.  I have to wonder if EL tried to fudge it on some of the steps (it's a time-intensive process: think scotch!, which is why it costs so much) because I do not think that LaMer is the same as it was when I first started using it back in the '90's.  But this is just one person's opinion and it's still an incredible team that deserves room in your arsenal if you can afford it in any way.  


Happy Monday, everyone!  Here's to all feeling their best: if not better!

Trying To Be Productive As Well As Amused

Birchbox on the left and Beauty Bar on the right: love the earphones, the Jouer and the Sisley!

I know that signing up for beauty subscription services may be rather passé but even though others may be bored with them, I'm absolutely thrilled to have signed up for a couple.  Color me easily amused and quite bored - even desperate if you must - but I think that they're a bit of fun - perhaps because I need a life?  (I'll not take that bet - it's too easily lost!)  


At any rate, when I signed up for Birchbox and BeautyBar three months ago, I didn't realize that receiving four or five beauty samples twice a month (one from each company) would turn into something I would look forward to like a young, budding, in-training, teenaged prima donna at Christmas.  Yes, color me easily entertained too; however, I also recognize the fortuitous timing as I'm supposed to be on strict bed rest for the next month. (Yes, I still sound like a seal when I cough!)


I can see myself eventually becoming bored with the concept but for the moment they serve my purposes.  Both companies send out boxes that are somewhat tailored to one's tastes. They wanted my approximate age (good since that increases the chances of anti-aging products and decreases the teeny-bopper products I have no one to pass along to), they know I'm not especially into hair products (I've given up on experimentation with my hair as a lost cause, product-wise: I stick to a few must-have's and call it a day) and they're aware of a few other "facts" about me, such as I tend to like a conservative look and not cutting edge, though I must admit to a surprising fondness for the turquoise nail polish that came in the other day.


Thank goodness I have this bit of "fluff" in my life because whenever I go through a bad spell (understatement of the decade) I tend to go a bit off track with my entire life (is this a post for understatements or what???) and that all adds to my spiraling downward until I can finally say "enough!" and figure out some sort of mind game that will force me back on track.  This week I've tried quite a few things with no luck, so I'm putting it out there via this blog in order to shame myself back into "order."  Here is how I'm starting "back," if I can keep myself at the level I am right now and not get even a smidgen worse.   If I can get through five days of this, I'll have a good chance of succeeding:


1. Weigh myself each day and RECORD the number on my calendar. My 20-lb. weight gain is downright depressing but the worst is over, I hope, since I DID finally force myself onto the darn scale, a huge move.  And, BTW, I record my weight in code...I'm NOT crazy!


2. Cut out all sugar. That includes fruit and that honey I don't even like!


3. Go back to "food combining," or my version of it. I'm convinced that all of us do best on some foods and worse on others and it's up to us to see which work best for our individual selves.  That is, don't listen to the so-called experts - after all, they change their minds as often as Seattle changes its weather, about every ten minutes from what I've heard.  You know your body best, so listen to it and learn from it.  Food fads come and go why?  Because a certain percent of the population can be always be found to be successful with any kind of diet. (A topic for another day!)


4. Go back to taking my vitamins religiously. (More later on this too!)


5. Start back to what is over-the-top hygiene for me, a person with CFIDS/ME, fibromyalgia, pain, sleep problems and migraines, crazy temperature fluctuations several times a day accompanied by sweats.  For some reason this really helps, though paradoxically I have to be careful and not over-do it.  Overdoing anything at all can accelerate the pain and insomnia for heaven-knows-what reason(s).  So, it's all a rather bizarre balancing act.


6. Drink tons of water. Yes, it sounds so pathetic to say that I've been too weak to even drink enough water, but it's true nonetheless.  In fact, all these "goals" are so easily obtained for the "normal" person but feel like bucket list items for "us."


So, I'll let you know how things come along. I have GOT to get myself in gear.   Summer's almost over and I've accomplished almost nothing!  Worse, the remodeling has stalled because of my being too sick to have anyone in the house, which puts me into another downward spiral.  If we don't get our walls painted soon, I may have to go jump off the nearest cliff as I can't bare the thought of another holiday with scarred walls, little furniture and certain rooms filled to the rafters so yet other rooms can be worked on.


What a truly crazy life I lead: I haven't been to our local mall in at least five years but shopped at the Petronas Towers just a few weeks ago.  Surely there must be a happy medium!  (Huge goal: TJ Maxx and Michael's, which I've never even been to!)  Perhaps the subscription service is one easy possibility that will lead to more.  At this point I must keep in mind that thing I sooo hate to say to myself: baby steps.  Annoying?  You betcha! I was never a baby-step person, not even as a baby, but it'd be great if I could get myself to feel just a tad human again and start getting some feelings of accomplishment!


Here's to all feeling their best, only better!


Have you tried a subscription service and if so, what did/do you think of them?

Identifying Sensory Overload - and how to deal with it.

Even had I NOT been an organized person, going to 13 years of sleep-away summer camp would have ensured it.  Here hubby and I are passing the experience on to our kids.

Before I forget: I'd love it sooo very much if you could go to my Facebook page and 'like" it.  You don't even need to be enormously enamored of me: it's OK...just "like" it, PLEASE!  Of course I'm not sure why anyone wouldn't actually like it - huh?  Ha!)  But I do need at least 30 people who "like" it (that's hitting the big thumb next to the image where the photos "icon" is up top) in order for me to get any sorts of stats from Facebook! 
This is the link. 


Pretty please!  I hate to beg but have decided that I can handle it if it gives me an idea of the number of readers going through that site and will perhaps give me a better handle on what my readers really do want to know! :) Thank you, thank you, thank you to those of you who have already liked it and I'm sure wonderful things will happen to you if you do: Karma!   And tell your friends if you have many of them, which I'm sure you do!  OK...enough degrading of myself! ;)


Now onto the subject at hand, dealing with yet another aspect of CFIDS/ME, fibromyalgia and its other goodies.
                                   **********************************************************************


Organization!  A decluttered house where there aren't too many items not needed, ridding my life of the things that don't serve a purpose.  These are the mighty and lofty ideas, desires and dreams I engage in these days:  well, if truth be told, I have actually done so for decades.  The crazy part is that I was actually BORN organized and one who decluttered, with the exception of the books in my life. (Would YOU throw out your friends? Aha! Point taken!) Everyone simply must have something that drives the partner in a marriage mad and these are pretty much the two biggies: the organization - hubby's downfall - and the house bursting at the seams because of books everywhere one turns, my downfall.  Oh, and photographs.  Oh, and the boxes my beauty products come in.  (See: I do like to be fair!)


But now that I live with my fibro-brain I find that organization is not just a help but is key, especially the older and sicker I become.  If there were only one thing that I could change about my family, "organization" and "decluttering" would probably be among my top picks.  It frustrates the heck out of me that no one seems to "get" just how much of a problem this is for me, how literally sick I get from the sensory over-load and how often I burst into tears from it - tears that lead to anger because I so detest them.  To me they are a signal of defeat and I absolutely cannot tolerate defeat: that's quite a slippery slope to doom as far as I am concerned.


When I do walk into my closet, for example, and see a mess, my brain short-circuits and I'm totally defeated.  To make things worse, with a mess I can't see what is right in front of me, big or tiny.  If things are moved around in the medicine cabinet, for example, or too many items have been stuffed into said medicine cabinet, I cannot for the life of me, literally, register that which is right in front of me because my brain fries.  Suddenly, nothing makes sense and I'm blinded.


I'm so adamant about the need for everything being in a proper place, and not having clutter, that I've used the "blind" analogy to my family for decades: I try to press upon them that were I blind, everyone in the family would KNOW that things need to have their assigned places and everything would actually be returned to its proper place, no one even questioning the necessity.  And yet, no one understands that I'm handicapped by messes and really and truly cannot see what I'm looking for if there is a mess.  Even on a "good" day this is a problem, but on a bad one?   It becomes a complete lost cause making me go downhill even further and faster.


The sensory overload not only triggers migraines, but in milder forms, more confusion, a sense of being overwhelmed and unlike the "old real Irene" who was almost manic for organization.  I now immediately start to shake, break out in a sweat, need to fight useless tears because several things happen: I can't begin to know how and where to start cleaning a mess, my body is too weak to clean up a mess and my brain can't even begin to understand where or how to start.  Imagine how frustrating this is to a person who, for example, used round plastic thingamabobs (much like the ones found in clothing department stores that are used for sizes) which I would slide on a rod of each child's closet and each thingamabob would be a marked stating the day of the week said outfit would be worn.  Oh, I wasn't a fanatic about it: the kids had choices, but there was always the system in place for most days.  Talk about cutting back on morning drama!  Each child had two weeks worth of outfits hung out for them.  It was survival: in order to be a half-way effective mom, I needed to keep things organized (each child was also color-coded with bins for shoes, school work, the toys that belonged to each child individually instead of them all as a group.)  


Furthermore, I resent the inordinate amount of time I waste each day to keep finding things all day long...and I'm talking about easy things such as the remote, cell phone and two pairs of glasses that keep getting lost in the bed linens!


Going one step further, when I get a migraine and need to take a med to smash that sucker out of oblivion, I often cannot even realize what needs to be done.


Many, many years ago, when my children were young, I once came down with a monster migraine while hubby was out of town.  Somehow I had the wits to call the kids' babysitter, a mother's helper almost, except that L started out with helping us when she was only 13 years old.  At that age and with my young "babies," I didn't leave her alone with the kids but she certainly spent a great deal of time at our house just helping me keep up with the three little rascals, playing with them in our tiny yard while I fixed dinner and so forth.


On this particular evening it was rather late to be calling anyone and I certainly didn't want her walking over to our house in the dark, yet I'm still not sure what it was that actually made me call her: it was just so out of character for me.  Yet there must have been something very off in my voice that made her realize that I was really sick.


"Are you having a migraine, Mrs. X?" she asked?  "Is your head hurting?"


I was too ill to answer and so by now 14/15-year old L kept on with, "Mrs. X.  You're having a migraine.  Walk to your bathroom.  Go to the mirror!  Are you walking to the bathroom?"


L commanded me through the paces of getting me to my migraine medication, knowing exactly where it was located in my bathroom, picturing in her mind where it was in my medicine cabinet, on which shelf, how many bottles from the end of which row, down to what that bottle looked like and how to open it.  


I've written before that back then the migraine medications were not especially effective, but the med I did take, thanks to our teen-aged L, was enough to keep me out of the hospital and my toddlers safe until hubby was due home.


If you need to convince your family or your roommate or whomever of the importance of keeping things organized, putting things back after they've been used, everything having its proper place, feel free to use my cautionary tale to drive home your point.  (However,  at the moment I feel like a fraud/failure writing this as our house is in such flux right now that NOTHING can be found nor are we even sure if we even own a lot of things any longer!  Darn you, remodeling!)


Just as a glare can trigger a migraine, so too can a brain short-circuited from seeing a mess.  Of course, the reverse is true too: nothing puts me in as good a mood as seeing a clean and decluttered room with everything in its place.  And in an emergency, having things in their place can be crucial.


On that day, L won her stripes and I never worried if I needed to leave the kids alone with a very mature 14/15-year old if I needed to run a quick errand.  We were all lucky to have L as our official babysitter as she grew up into a young lady who eventually left home to go to college and start her own family and when we see photographs of birthday parties she helped me manage from becoming total zoos and photographs in which we celebrated many other milestones of our lives, we remember her fondly.


Perhaps that should also be a tip: find yourself a L.  But I can tell you from experience, they are hard to come by!


And I am now going to go play one of my mind-games: I'm going to go directly back to my bed, but on the way I will put 10 things away.   I like the game, "The Power of Ten," since it's about the only way I can get anything at all done these days.  And since I had the audacity to write it down here, I must carry through!  Sometimes I think I'm my own worst enemy!


But to sum up:

• Being organized is key to keeping you from totally going nuts.
• Owning less rather than more is especially important to "our" lives and getting through them.
• Everything in its place is a downright birthright - not to mention an important survival strategy.
• Playing mind games that work for you gives a huge heads up.  (More on that in a later post!)

I hope everyone is feeling as well as can be, only better!  Happy weekend to all!

Loving A New Marine-based Cream.

I do believe I've found a new moisturizer that will be spending some time on my "semi-permanent" list.  Given the fact that those of us with CFIDS/ME/CFS and fibromyalgia have such sensitive skin, I'm always excited when I find a new skincare product that actually works the way it's supposed to.  And for some reason, it's moisturizers that I have the most problems with, just as I'm hitting an age where I really do need good moisturizing products for skin that's becoming very dehydrated.  The new product I'm excited about is "Pro-Collagen Marine Cream" by Britain's luxury brand Elemis and I've fallen in love with the cream for several reasons:

• It's a marine-based formulation, like my beloved LaMer.  In this case, the marine algae is Padina Pavonica.  Everything I read about various types of marine additions to skincare products convinces me that it's a really good way to go.  My son is into aquaculture and over the years we've talked about the many pluses regarding algae and other oceanic "goodies" and I'm always amazed at what promise that field holds for skincare in the future.
• Though on the pricey side, it takes very little to spread completely over the face, neck and chest areas and it sinks right into the skin, not feeling at all greasy.
• The feel of the cream is light, almost as if it's been whipped and I love the texture for the summer, especially with the very hot weather we've been having.  Because I was sweating so much by the time I was finished with my bath, (ugh! do we all need to take baths after baths and where does it end?) I put on a very thin layer on my face, sort of the absolute minimum to trap the moisture in the skin, while waiting for my body to "stabilize."  After I had rested, drank several large glasses of very cold water to push my blood pressure up to a non-fainting level and stabilized my body temperature, I added another layer of the cream to my now non-sweating face.  A few hours later my face feels lovely and soft.  Each time I've used this cream, the end result has been surprisingly and consistently excellent.
• It's an anti-aging cream. Need I say more? Well, in case I do, I've realized that my face is suddenly getting a bit saggy, so I'm going to start concentrating on that aspect of my skincare. I still have a few months before I hit a very depressing birthday and I'm hoping to be in as good shape as possible for that day, in order to soften the blow of the number! (Which means I need to stop my vacation eating and get back to where I was before the trip to KL!)
• Back to the anti-aging aspect of this cream: Elemis claims increase cell renewal (good!), to reduce fine lines and wrinkle depth by 78% as well as increasing hydration and moisture levels by 45%. Personally, I never trust these sorts of numbers because I'm one of those skeptics who believes that statistics can be manipulated to anything the doer wants to "prove."  Having said that, however, I think we all have a radar of some sort that gives us an idea of whether or not something may work, one of the reasons for the effectiveness of samples!  I like the feel and have a good sense about it.  I especially like the fact that the cream has good healthy ingredients and looks "clean," and though not claiming to be "organic," it's still not chockful of preservatives and chemicals.

So, my face has not broken out, my skin has not grown any nasty surprises nor formed any ugly craters and the feel is lovely.  I think I've found a winner for the rest of the summer, and hopefully, adding a lot of moisture and elasticity to my suddenly-aging skin!

Will I Ever Accept My Reality?

In my wheelchair in Amsterdam, I never noticed the awful color of my lips, my hubby's signal as to how I'm doing! 

How long exactly, does it take to recognize and realize that one is sick?   And I mean truly, life-altering sick, not just getting laid up in bed every now and again?


It's been well over 35 years that I've been ill.  Unfortunately, I suppose it wouldn't be too much of an exaggeration to say that somehow I am pretty slow in the understanding of consequences with this illness.  Somehow I keep thinking that tomorrow I will wake up and be back where I was in very early 1975, running around with my course work, teaching, dating, going to parties, planning my future as to whether I should get a PhD or go to law school, agonizing only about how I would leave so many really incredibly fantastic friends, ones who later proved to be worth much more than their weight in gold when I became so sick.


I can't seem to recognize the reality of my "life style," and yet my hubby and I could never count all the hospitalizations I've had over the years.  Heck, there was one year alone that I spent more days in the hospital than I did at home.  There hasn't been a year at all since 1975, I don't believe, without a good lengthy and serious hospitalization.  I can't even remember the names of all the doctors I've been to nor the names of many of the medications I've been on and there have been times when I've been on 25-30 different meds at one time!  And before anyone expires from seeing that number and thinking I've gone to quacks, let me assure you that I've seen the best except in those cases when I was told that I should save my money and energy because there is nothing that THAT particular specialist could recommend or improve upon!  (HOW depressing is THAT???)


I am still on such a vast number of medications that literally half of my carry-on bag on the plane was filled with said medications, and that was with packing some of those plastic amber containers inside one another like little "Matryoshka" nesting dolls, the smaller ones inside larger ones, tripled up in quite a few instances in order to save space.  


Oh, I knew I'd get sick, real sick, from the trip, but it was all so abstract until the time came to pay the piper. Somehow, I kept thinking, in the dark recesses of my mind, that surely I exaggerate my illness - though whether it's because I've been told so by society for so many decades, because early in life I learned that I can overcome anything I set my mind to do, whether it's out of sheer conditioning, or even stupidity, I'm not sure.  Perhaps it's perverseness because my family is always giving each other looks when I come up with a great plan or because I just want to shock the hell out of everyone who's written me off, or perhaps it's because of my family's tendency to treat me alternatively with kid gloves or to dismiss my plans.  Whatever it is, I still cannot believe that I am really and truly ill.  


I also know that I spend entirely too much time very angry and disgusted with myself, wasting precious energy. After all, I look like everything I've always abhorred, the lazy person.  Worse, I can't do the things I love to do. Just today I spent way too much time trying to analyze how I would wash a wall that is all mirrors and the only thing that made me realize how stupid the move would be was NOT because I came to my senses but because I realized that the painter who took down the wallpaper in the hall will need to plaster up and sand down some huge cracks and gouges, thus rendering cleaning of the glass wall a, well, extremely idiotic move!  I spend too much time silently angry with my family as well, feeling as if they cramp my style, especially when they point out the signs that indicate that I'm not doing well.  I hate that they just might be, or are, right.  


And, of course, they're right - that's what makes it all so frustrating and truly maddening!  When ever-annoying hubby tells/begs me to stay in bed and not do anything, there is a perverse part of me that wants to rebel.  I HATE being told what to do, so hubby tries not to "warn" me, but some days I suppose the temptation is too strong and he goes against his best instincts.  I mean, I really hate any limitations.  Looking at a profile of what someone described me as on Classmates.com, I was delighted to see the main characterization as "gutsy." I'm quite proud of that description!   I was a tomboy who actually jumped off one-story buildings quite frequently and would get so disgusted with my poor younger brother because he objected! (What a killjoy!   Hummm...he also didn't want to shallow-dive off a fishing pier where I then was almost paralyzed from a misjudgment in how deep the water was - only inches - again, what a killjoy!)


But as disgusted as I become with the "guidance limitations," I must admit that this week I've almost passed out dozens of times, quickly grabbing hold of any near-by furniture, or a wall, as I see stars, then blackness, my head spins, my legs start to melt, I feel my blood pressure dropping and I break out in a sweat, getting all clammy.  It's very annoying because I would really like to unpack my bags.  This is usually a two-year project - REALLY - and I gave myself a two-week deadline this time.


And we SHALL see.  I am, after all, on a self-improvement quest this year.  I've had it with doctors at the moment and am determined to live life MY way this year and darn the consequences. I want liberation! I crave liberation and darn it, I deserve liberation.  I'm so tired of counting and analyzing each step I take and though I do want to do a lot of the things that do help me, I'm mighty tired of marching too often to other peoples' drums, especially since I've practically pioneered this darn illness.   Few know the poop that's coming down the pike for them because so much of it IS so phantasmagoric.  Oh, I can just hear shrinks galore saying things like "delusions of grandeur" to the other side of the darn spectrum, "she's sooo in denial" to everything in between.  It's rather scary putting your thoughts out there because there are so many "shrink" type people who will just love to analyze what we write in our posts when they have little more to do than clean out their bellybuttons on listless weekends.


And yet I look at those coming down with CFIDS/ME/fibro and its myriad of complications, especially the young "kids" in high school and/or university, and want to scream at the top of my lungs and shake some sense into them and say, "look at me and do NOT do what I did!  Take a page out of my book.  Do you really want to end up like me???"


How I wish I could shake sense into them! If I could, here are some points I'd like to make:


1. Do not overdo at all.  This is a cardinal rule.


If you are in school, do not force yourself to go to classes and finish your degree(s) "on time" or even early.  I do not know what my rush was all about other than I had tunnel vision, school cost money I didn't have, so I took too many courses each semester in order to finish early.  One Vietnamese accupressurist who did some of the most gifted work I've ever witnessed and experienced made an interesting observation about six months after seeing me weekly, a man of VERY few words: "I never meet someone so dead who still alive."  Did I mention that he spent approximately six years in a Vietcong prison under some of the worst conditions imaginable?  (I only know this because people like to tell me things and I'd be asked, what did so-and-so tell you today?  I heard him TALKING to you through the wall!")  He also pointed out that I was never able to do much with the degrees that I'd earned, due to my illness.  I sort of screwed myself big time, in ordinary parlance!


2.  Today we KNOW that the best way to beat this nastiness is through rest, pacing, lessening the stress load, etc., but the more you do during this "window of opportunity," the less the chance of overcoming this nastiness.  This is tough love talking here, reality!

Unfortunately, the longer you go sick, the harder it is to overcome this illness and that's why it needs to be nipped in the bud.  When Ampligen first came out, there was a reason for the five-year cut-off date.  It's believed that once you've had the illness too long and too severely, you're dead meat, so to speak.  My analogy, though a bit flawed, but enough to give you the idea of what I mean, is that I am the patient who got polio before the vaccine.  No amount of help cured the polio victim.  But though we still don't have an ME vaccine, we do know that with proper rest, for as long as it takes, CAN work to get you back to pretty much normal.  I've seen it happen: not often, but in the cases I've seen, the attitude was the very opposite of mine: total dedication to selfish resting, no helping anyone, no exertion of any kind, total devotion to self and determination to getting better and screw anyone else out there.  It's not easy and at the time it took a lot of selfishness because NO ONE was advising the amount of rest and relaxation really needed and the amount of devotion to it.


3.  Tiny CFIDS/ME factoid:  I also found it interesting that the further you get from the equator, the higher the incidence of CFIDS/ME/fibromyalgia.  To me, this reinforces the "overdoing" concept.


I was shocked the first time I heard this, in a jewelry shop in Amsterdam, of all places, because the lady waiting on us asked about my "condition," since I was in a wheelchair and the shop WAS teeny tiny, to put it mildly.  The first part of the surprise was that she knew as soon as she saw me that I had ME. Her sister had it too, quite a bad case of it at that.  I find it amazing how often we in the CFIDS/ME/CFS and fibro community can recognize one another. I'm convinced that we must give off some sort of signals, looks or even ME pheromones to those in the know!  At any rate, hubby, who's quite a bit more in tune with these things than I've been at times, had quite the discussion with the woman and I learned so much that day. To be frank, at first I thought the woman was a bit nuts but hubby assured me that this was indeed one very much-discussed consideration at the time. There is a theory that the colder climates make for less rest than in warmer one. That is, living in colder climates produces more Type A personalities because in hot climates it's believed that the heat zaps one of the energy to overdo. Interesting.  I also think that was the day that made me realize it was indeed OK to use a wheelchair if I needed it. I finally made peace with it, not feeling quite as much the fraud, the person begging for attention, all because I got validation from someone in the oddest of places and circumstances.


But what I haven't made peace with is KNOWING just how sick I'll be from anything I do...  I just have no radar for it and certainly no tolerance for it.  I suppose it just goes to show us how much our youngest years influence our lives and then how much society influences that "baggage," be it good or bad.


And so, I doubt that I'll ever truly come to believe that I'm really sick.  I'll play-stop to a certain degree to make my family happy or to stop them from saying the same message in a thousand different ways, "but mom!  You knew what would happen!"


Ah, but do I really?  I think not.  Had I known I'd be this sick from flying to Malaysia would I have done it?  Well, I didn't believe I'd get THIS sick (after all, it's been six months since my last hospitalizations - I was on a good roll! ha!) but yes, you can bet your sweet bippie I would have gone anyway!   Because really, I have a hard time believing that when all is said and done, I have anything truly more seriously wrong with me than a weak will.