Orthostatic Intolerance and POTS

Smile!

The other day my orthostatic intolerance and POTS reared its ugly head again - not so unusual - but at a most inconvenient time.  I had a dental appointment for a good cleaning and then another meet with the dentist, to go over the plan of what we'll do over the rest of the time we have left.  As I've written before, my dentist and I have agreed that no work should be done once flu season starts because I always end up getting sick from a visit - and when I get sick, I really do it right!  One year, after a tooth extraction (with an oral surgeon) I caught a bug that lasted two years.  At the end of this awful period I was left with blotchy legs, all purplish and red.  Anyway, there are just too many germs involved with waiting rooms, etc.

I've been going to the same dentist for the past 25 years and he's seen how sick I can get.  I hate that I end up canceling appointments right and left so we've decided that any work I need has to be done between April and September - minus an emergency of course. *Meekly looks up from under her bed covers*  Ugh...I started a bit late this year!  

And I do so love my dentist.  He never lectures me about anything and just says "Do the best you can and don't worry about it," or some such, with a comforting hand on a shoulder.  Whenever I get this "treatment" of kindness and encouragement, I want to cry because kindness always brings me to tears - much more so than any sort of meanness and callousness does. Oh boy. Am I off track or what?

Getting back to the POTS and orthostatic intolerance, two weeks ago I wrote about my abbreviated makeup job in going to the dentist.  I thought that was a hard getting-ready-to-go day.  And mind you...this is a really important thing for later in this post.  Getting out the door is the hardest part of my going anywhere.  Once I've taken a bath and washed my hair, dried my hair, put my clothes on .... Whoops!  A mistake: need to backtrack and undress because I forgot to put on deodorant.  Need for it to dry, to wait and then put on a second deodorant because I perspire just that easily.  Yes, so put clothes back on, see what shoes or boots will fit me that day. I'm entirely too exhausted to do much more to my face than apply some sort of serum, finding it too hard to even think of putting on an SPF, a BB cream or my CC cream.  

And so, as I got out of the tub my body thought it would remind me that it wants/needs to stay in bed and not go anywhere whatsoever, for whatever reason.  Hubs and I thought differently, fools that we are.

I started collapsing, I couldn't sit up in order to breathe, I couldn't breathe because I had no energy to do so. I've only had one major panic attack (that I remember) and it was a doozy, causing me to end up with bronchitis which turned into a pneumonia that was so near-fatal that I got a pneumonia vaccine - a big step in "those" days. This was worse than that panic attack and frankly it scared me. Yes, I'd noticed in fleeting that I was getting awfully light-headed too often in the three or four days before this happened but I didn't need to be anywhere so it wasn't too much of a concern.  There were enough squeaky wheels (symptoms, disorders) to address and the blacking out bit was just a minor inconvenience.  

Hubs, who was getting very upset with what was going on, was trying to be as encouraging as he could be but now I was in the cruddiest of moods.  First I felt "he's in my way, under my feet every time I turn around," yet moments later I was exasperated, thinking, "where the heck is that man?"

"That man" was pumping really cold water into me, gave me OJ, all hoping it would work.  I was collapsed on a chair, bent down and slinking off, which reminded me of my daughter's graduation from university.  I kept sliding off my chair as the new graduates were making their way to the stage, being plucked right back up again by hubs, my mom completely and totally oblivious to everything going on around her but that her beloved granddaughter was about to receive her diploma.  That her daughter was having a side show of her own, slipping and sliding away, she didn't see!  (I hate to think how many people must have thought I'd had too much to drink!)  And once I starting passing out on top of the slip and sliding away, there were medical people around to help carry me out.  But that's another story, as in "Why I didn't see my daughter graduate even though I was there?"

Back to the dentist day.  As I was (so melodramatically) finding it hard to breathe, move, think and other (superficial) activities, I thought to ask hubs to take my BP.

Like many of you out there with CFIDS/CFS/ME and/or fibromyalgia know, our BP can be very low for all too many reasons.  I usually concentrate on the top number without giving much thought to the bottom one but I was now concentrating on the bottom.   It was 80/50 sitting down.  When I said that I wanted to have my BP taken standing up, he tried to put his foot down and said it was just too dangerous at that moment to do anything but sit there for a while and let the liquids do their job and to get a bit to eat to stabilize my BP.  He was right. (Moan! Groan!) 

It was a tricky little period.  The getting-ready-to-get-out-the door is always the hardest part for me.  Once outside, my adrenaline can kick in and I can go into emergency mode, but there is always a huge price to be paid in the end.  And it doesn't seem to matter if I've been out for 8 hours or 2 hours.  Weird!

When the dentist said that the next phase of fixing my teeth would take a bit of work he was concerned. Finally, he magnanimously proposed that we split that job into two days, two appointments for 90 minutes each.  Goofy me said, "fine!"  I always think it's fine UNTIL I have to do it and I realize that I am indeed a sick person.  Why is it that I have such a hard time getting around that little "fact"?

Hubs spoke up and explained that after my one and a half hour appointment, I'll be so ill that I won't be able to come back another day anytime soon.  After much discussion, we decided that it would be a better tactic to go just the once for three hours vs. the two appointments for 90 minutes each.

What would have been your decision?  And do you find that getting out the door is the hardest part of anything you do?

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

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Friday Tidbits: Cortisol 101

Have you been tested for "everything" and "everything" comes back normal - yet you're fatigued and just want to cry or scream because you still have no plan of attack for getting better?  Are you (or your doctor) on the hunt for another reason why you are constantly running out of gas?  Do you yearn for a non-psychiatric diagnosis, some sort of tangible answer to at least some of the problems you're having, in addition to or because of your CFIDS/ME/CFS and/or fibromyalgia?  Are you tired of being looked at askance, or even accused of being depressed when you know you're not, or know that if you are depressed it's a secondary depression caused by illness, not CAUSING your CFIDS or fibro?  (I address the differences in depression here - and it's one of my favorite posts.)

How many patients with "invisible" illnesses have been told that they are in denial when they express their opposition to the notion that they're depressed and want their doctors to search for medical reasons why they're in pain, fatigued, have low stamina and overall feel like poop?

I've already written - ad nauseum for some I'm sure - about certain hormone deficiencies in patients with fibromyalgia, such as low levels of DHEA, growth hormone and thyroid hormone.  One hormone I've not gone into, however, is cortisol, the body's natural cortisone.  It was alluded to when I wrote about Dr. Janet Travell, one of my "medicine heroes."  She discovered that then-senator John Kennedy was suffering a severe deficiency of cortisol known as Addison's Disease and she treated him with cortisone injections. Without them JFK would never have had the energy or the stamina for the presidency.  This underscored how vital cortisol was for the body to function, especially in stressful situations.  (Remember the Cuban Missile Crisis from your history books - ancient broad that I am I barely recall it, remembering only the drills for nuclear holocaust!  And good heavens: can you imagine how many spoons JFK needed for that "tiny" little episode???)

Anyway... skip to more than half a century later, into a new millennium and doctors today understand its significance much better.  That, unfortunately, doesn't mean patients are being tested for cortisol deficiency when indicated.  Mind you, we are not talking about the cortisone shot that you may get if you've had the miserable misfortune of finding yourself reading a book in a field of poison ivy - as I did at age 9.  Whoops. And they only gave us calamine lotion! Whoops again... tangent!

What we are discussing in this post is a deficiency of cortisol and using cortisone medications to replace what the body should be making in the first place.  Again, my point being?

Many years ago, Dr. Leslie Crawford of the University of Michigan discovered that some of her fibromyalgia patients had low levels of serum cortisol.  And why is cortisol important?

I'm so glad you asked!  Cortisol is important for everyone. It keeps healthy people healthy.  Simple! Specifically, it's important because it enables us to tolerate stressful situations without literally collapsing from a strain on the body.  This hormone is made by the adrenal glands. Yes, DHEA is made in the adrenal glands, but in a different section.  

Dr. Crawford suspected that a subgroup of her fibromyalgia patients might be cortisol-deficient and tested her patients by drawing the cortisol blood test in the morning.  (More on adrenal failure and the possible CFS/ME connection in a future post.)  Lo and behold, Dr. Crawford discovered that many of her fibromyalgia patients had levels that were so low that they would become weak, very fatigued and have almost no stamina.  

Dr. Crawford postulated that many of her fibromyalgia patients have a disturbance or a dysfunction of the hypothalamic-pituitary-adrenal axis.  The hypothalamus, which is in the deep part of the brain, sends a signal to the pituitary gland (the same gland where growth hormone comes from) which, in turn, sends a message to the adrenal glands to make sufficient quantities of cortisol.  An interruption in any of these steps results in the body not making enough cortisol to function properly.  If this deficiency is not identified, often the patient will not be able to do the simplest tasks without stressing out his/her body. 

The problem is that if you can't make enough cortisol you can't even respond to the stress since cortisol is one of the body's stress hormones.  The good news is that if a cortisol deficiency is identified, treatment is relatively simple and inexpensive. But if this problem is not identified the quality of life, as you can imagine, suffers greatly. 

What to do? 

• Make sure that your doctor checks hormone levels if you are fatigued and have low stamina and the explanations you're given don't seem to jive with what you're feeling.  ("Jive" - how about that word!)
• If growth hormone, DHEA, thyroid levels are OK, an AM cortisol level should be checked.
• Often low AM cortisol levels can explain symptoms and then proper hormone replacement therapy can begin.  

So, here are the take-aways for today: 

• On the whole, rarely is cortisol considered in fibromyalgia.  And it should be! 
• In order for your body to deal with stress, any kind of stress, it needs cortisol at its proper level.
• Taking cortisone for a cortisol deficiency is not the same thing as taking cortisone for the inflammation common in problems such as hives, poison ivy reactions and the like.

If "everything" has been run, discuss with your endocrinologist (or rheumy who should refer you to an endocrinologist) how likely it is that you're hormone deficient in this area.  I find it truly amazing how many answers to the fibromyalgia and myofascial pain questions come back to hormones these days.  Truly amazed. And it gives me hope!!!  Hear that?  It gives me hope!

And there you have it.  Yet another hormone that might, just might, play a role in how you feel.

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



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Aromatherapy: Getting My Act Together...

American tourist (that's moi, of course) discovering the beauty of essential oils while in England back in the late-1980's...

"And so I've been putting off something that has been a silly economy and a hugely effective tool in what has been part of my arsenal to seriously fight my severe Chronic Fatigue and Immune Dysfunction Syndrome (unfortunately, AKA "Chronic Fatigue Syndrome") as well as my fibromyalgia."

Since my traumatic hospitalization, I've been on a mission to reexamine past medications, past diets (as in "way of eating," though losing weight is always an issue), past physical activity that I could/can handle and so forth.  However, the other day it occurred to me that somehow I'd dropped a ball.  (There are, after all, so many balls to juggle.)  Worse, this was a hugely successful ball in my arsenal - for me, I hasten to add. It's the world of essential oils and aromatherapy meeting and treating Chronic Fatigue Syndrome (a less palpable term than CFIDS or ME) and fibromyalgia.  

I "discovered" aromatherapy quite by accident when going to a contemporary museums, i.e., to British grocery stores, department stores, book stores, drugstores (oh how I love to look at what personal items another country has) and so forth. (Don't you just love the term "contemporary museums"?)  

As I added the oils to my daily life, eventually I was able to graduate from a wheelchair to walking - not far, mind you, but enough that life was made so much easier.  I could walk in my bedroom area and if, need be, I was able to go down to the kitchen, although basically, the only thing that would come out of it was the newest disaster.  Talk about getting into a bad mood!   

My sleep (which I consider to be akin to labor although minus the great, miraculous result - a baby!) substantially improved. It was such a downright miracle that good ol' "Miss Irene" in her usual fashion of studying everything about a topic that tickles her/my fancy took it upon herself to learn all she could about aromatherapy - most of which has been forgotten by now.  Fibro-brain strikes again! ;)  But that's what books and the Internet are there for: we can do so much while still in bed.

Today I should be in a fantastic mood for quite a bit of the day.  (If this family could just stay out of the hospital for a while, I'd be on cloud nine!  Don't ask me where I was Tuesday night!)

Here are a few truisms about me:

• on the whole, it really takes so little to make me happy (Goodbye, pain! Please go down some sewer!)
• I am one of those female "weirdos" (as my middle child would put it) who hates to shop 
• nine times out of ten, I'll pick out a few basics at one of my "favorite" online stores, but then I am way too exhausted to actually place the order.  My brain is simply too fried.  Pain has its way with me. (Get your mind out of the gutter please, my dears!)
• there are just too many steps to placing an order.  You know that you have CFIDS/ME/CFS and/or fibro if this truism applies to you as well.  I have to wonder, what happened to my love of shopping, "window" as well as otherwise, which I had before this DD hit me?
• worse, with my short-term memory problems, my "attention" to how much things cost. My brain that is just soo fatigued once it comes to credit cards, filling out addresses, filling out passwords (searching for a piece of paper or the notebook that has SOME of them) is just more than I can handle.  Yes, I know: tell you something you didn't already know! (But it's validation, no?)

And so I've been putting off something that has been a silly economy and a hugely effective tool in what has been part of my arsenal to seriously fight my severe Chronic Fatigue and Immune Dysfunction Syndrome (unfortunately aka "Chronic Fatigue Syndrome") as well as my fibromyalgia.  Somehow nature's "gift" of essential oils, which has worked so well in the past, has fallen by the wayside.  

However, in the midst of writing this post, I finally shopped and then actually bought quite a few essential oils. (See the power of a blog? I'm actually able to cross an item off an old mile-long list for shame!)  I used to be a regular customer and would even foist the oils onto my kids for various things when they were growing up.  LOL: one friend's daughter of about 30 years ago, after not seeing me in ages, asked "are you still using that witchy stuff?"  Out of the mouth of babes.

AND NOTE: Did I mention that the "company," Aromathyme, from which I most frequently buy my  essential oils is having a sale of 10% though May 27, code word SUMMERTIME? 

Looks like it's time to bite the bullet and attack the things that essential oils can address. 

I've long wanted to start a series on essential oils, especially since the first post I wrote about my three most favorite essential oils had such a high readership.

Four Hours Later:  Oh how I wish I were joking when I say that this post was started well over four hours ago. It's taken me that time alone to go through the web site I was ordering from.  I've picked those oils which were so useful to me in the past.  I've picked a few new ones that look promising. I've taken advantage of the discount and free shipping.  I've picked according to conditions, many which I've discussed (harped?) about for ages: insomnia, mood, clear thinking, memory and so forth.  I'm absolutely thrilled that I'm going back to essential oils.  And I can't wait to get them in the mail as soon as possible. 

After a bit of experimentation, I'll let you know which are (still) successful.  And I'll let you know how it's going.  

Teaser: three of the essential oils ordered were ravensara, neroli, ylang ylang.  Heaven.

In the meantime, I hope all are feeling their best, only better!  Ciao and paka.


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Beauty To Consider: BB Creams and Silicones....

East meets West:
In light of this being "Western Easter," Eastern Orthodox Easter next week, I thought it'd be fun to show the first compromising of our two cultures blending together as one family.  I love the skeptical looks on the females in hubby's family and won't even try to say what my mom's probably thinking. The tiny bunny was probably the only thing all agreed on!

Just over a week ago, in order to try to cut down on my feebly slow "getting ready in the morning routine" for my appointment with the beauty heaven I was (hopefully) heading to, I thought I'd try a few new beauty products properly.   As always, I'm on the hunt to look my best - with a minimum of effort, please! - in the ever-desperate hope that the savings in time will give me more time/energy for the actual event.  And I'd hoped that I'd have tips or new info to send on to my readers as well.  

I thought I'd test a few more of those BB creams I'd mentioned in an earlier post. May I say how surprised I am by the fact that so few people I've spoken to lately have never even heard of BB creams?  Wow!  For perhaps the first time ever, I may be at the beginning of a trend as opposed to the end of one. Excuse me while I pat myself on my back - and try not to break my arm doing so!

A few days ago, my daughter stopped by the house and I ambushed her as a very reluctant tester for two products, one of which was a luxury sheer coverage foundation I'd put on half of my own face hours earlier in the day.  Yes, the makeup looked nice and I could  see a difference but it was not really worth the exorbitant price. On the other hand, I liked it enough to want to try the fuller coverage version and will get back to you on that when I get up my nerve to order it - enough damage has been done to my wallet lately in the beauty department.

At any rate, when asked if she could tell which side of my face had the sheer coverage, my daughter could see the difference immediately, though she too agreed that it wasn't worth the price.  After putting some of the sheer coverage makeup on her face, I wasn't impressed with it either, though for a different reason. The makeup didn't melt into her skin.  Something was off.  Perhaps it was just too mask-y looking. But, aha!  I thought to try the Dr. Jart+ Premium BB cream on the other side of her face.  

Oh how I love having a daughter!  She too loved the packaging - UNLIKE her dad, who had a hard time finding ANY enthusiasm for it a few weeks ago when I showed him the beautifully engineered and designed "tube."

The Dr. Jart+ went on beautifully. I loved it and best of all, she loved it enough to take my tube home with her.  Actually I think what she loved most was the fact that the SPF was a whopping 45 and though the skin tone had evened out beautifully, she still looked very natural with her freckles peeking through.  I loved it because you could absolutely tell the difference: it just lifted up her skin, making it so fresh and looking almost as if she'd been on vacation, masking the signs on her face of the influenza (not just the "flu") she'd battled a few weeks ago and was slowly recovering from.

So, the next day I tried two other BB creams in order to not have to borrow my daughter's for my one day out of the house... my replacement, which I'd just ordered, would not arrive in time for my great escape.  I tried Clinique's and Boscia's versions. Both companies I like quite a bit.  I've bought their products in the past and been happy with them.  I must say that one of the BB's was OK, but something was still off and it was hard to put my finger on what it was that made it look so wrong. And one or both caused bumps on my face, as well as redness. Furthermore, I had to wash the BB's off BOTH sides of my face within less than a half hour - why I thought the burning would go away for both products I have no idea.  And, BTW, I've never before returned a beauty product - with the caveat that I don't ever REMEMBER doing so - but you can bet that those two were going back; they were in the mail the following day.

I suspected, but now am fairly sure, that I've a problem - I may have an allergy to silicone.  

After my first office visit with my plastic surgeon to get the stitches out for "The Claw," what I affectionately call my arm and hand these days, I was given a silicone sheet to wear on my approximately 30 inches of scars.  I waited for everything to be healed with no broken skin, as instructed by everyone I saw that day.  I swear, I felt as if I were Moses receiving the commandments by God when the silicone sheet instructions were given.  I was nervous but I was really excited.  When I arrived home I sent an email to my best friend and told her all about this miraculous new treatment. I'd googled it, of course, and had been so thrilled to read the rave reviews. Naturally, I'd want my BFF to know about this immediately.  (Oh, of course she must have known this telepathically, but I just had to be SURE she'd gotten the message!)

Finally, I figured out how I would cut the sheet to allow it to fit all of the scarring.  The directions said I could wear the silicone sheeting for just about all day and night, only taking it off for a little time.  My surgeon and his support staff said to put it on for only six hours and no more, but definitely for the six to get the full benefits.  That was rather complicated, since as mentioned before (Ha!) I don't have any predictable sleep patterns.  If I put them - the now cut-up strips - on during the day, I might fall asleep.  If I put them on at night, the same concern.   A few days later I bit the bullet and told myself to stop all the tomfoolery and just get on with it.

Well, after about five minutes, my ever-observant hubby looked over at me and said, "You know, if it hurts you SHOULD take them off."  Well, I had no idea why he said that...I hadn't noticed the tears rolling down from my eyes, "the tell." I answered, while staring at the TV, "That's OK.  I can do it."

Hubby looked at me (again) like I was the crazy one and said, "If it's hurting, take it off - IMMEDIATELY.  Are you nuts?  You're probably having a reaction."

Me?  Nah! "Oh, I can take it," I, more or less, whimpered.  "I don't want those scars!"  

"Are you bonkers? Take those things off and let me take a look at that. Really!" he said, a tad exasperated.

Well, the entire area covered by the strips was red, angry and inflamed. And the spots and lines where the staple holes were - the ones that make you look like Frankenstein - had, more or less leveled off before, but were now back to being ugly, pimple-looking creepy bumps. Gross!

It was awful.  I could take the nettle-stinging feeling but to have such a huge step back in the healing - well, you know how vain I can be.... Or should I say how much I'll give up to look good.... This was a definite mistake.

Of course, I emailed my BFF immediately because with our luck she or one of her (grown up) kids would just have had the sudden misfortune to also be in a position to need those silicone sheets - at that very moment! - and someone would inevitably be told, "Oh, Irene's doctor gave her that and she googled and read in tons of places that this is the best thing out there" and end up having an even worse reaction than I did!

OK, folks, I can be slow. But it finally dawned on me that one day, at the "medical center" with my daughter, I'd put a new primer on my face and immediately, it burned so badly that I threw the sample away - right after thoroughly washing my face, first with warm water and Dove (I always go back to Dove, don't I?) and then applying very cool water compresses because my face was red and getting inflamed, followed by my skin-saving and rescuing LaMer.

After the silicone sheet fiasco, and keeping in mind the one primer reaction, I started noticing reviews on Sephora and other beauty sites about women having problems with dimethicone in beauty products.  It finally hit me that I too must have an allergy to silicone.  But I had been using silicone all along, I realized, as I started to read the ingredients on various beauty products in my cabinets and drawers.  Talk about a headache!  I suddenly realized why I disliked chemistry so much in high school.  But it was fascinating that there were some products that I really didn't care for or some I loved and it was the dimethicone that seemed to be the main difference.  The few products with silicones which didn't seem to bother me were those that looked as if they hardly had any silicone in them.  But I soon realized that perhaps some products were formulated differently - such as with buffers?  What do I know?  To further confuse the issue, I realized that silicone goes by many different names.  

The point is that the reaction didn't hit me strongly under most circumstances.  On the other hand, I seemed to get unexplained little bumps on my face that I had thought were due to nerves about my daughter's precarious situation - they may have been, instead, reactions to the silicone.  Under some circumstances I may not have been getting a bad reaction, but what were those circumstances?  So, at first I stayed away from all silicone while doing research - a guaranteed headache-producing exercise, let me assure you.

I was "outraged" when I read on one skin store's blog site, written by a physician, that Vitamin E should not be used for scars because reactions - allergies - could take place, but that silicone NEVER had any adverse reactions.

OK.  Let's see if I have this straight.  There is something out there that NO one has ever had a reaction to?  Hmmmm.... Ever heard of the exception to the rule?  Well there you go.  Someone's either not thinking or is stretching the truth if they say there's NEVER been an adverse reaction to something.  Don't even get me started.

At the same time, I was suddenly coming across sites with on-line shopping where they proudly advertise the fact that THEIR products have no silicones at all.  The reviews on any number of beauty sites report women having reactions to silicone. It's a HUGE concern.  Some women make silicone sound as bad as when doctors demonize cigarettes as if they were the equivalent of smoking crack cocaine.

When my surgeon's assistant suggested Vitamin E oil, her boss scoffed at her (in a light-hearted way) and when I piped in that I believe in the effectiveness of arnica and lavender essential oils, for example, he looked at me as if I were bonkers.  But he was all for the silicone.

And I don't blame him.  He's kept up with the medical studies that are constantly changing.  These include papers on Vitamin E oil therapy, the latest saying it was the massaging that made the difference.  And of course he wants minimal scaring.  He wants what's best for me.  Furthermore, it is, after all, his work that is on display for the whole world to see - especially when I don't wear sleeves that go from my shoulder down to my fingers.

My feeling?  I think big pharma is putting out good money to keep yet another nasty pharmaceutical problem hidden as long as they can get away with it.  Call me paranoid, but that's exactly what I'm afraid of.

I might have been foolish, but I finally made the decision to go with selected beauty products that have SOME silicone. First, I would continue with the products which I hoped weren't causing problems, for whatever reason, my go-to products.  Secondly, that was after looking at the labels and ensuring that there was very little silicone content in anything I put on my skin.  I would trust the manufacturer to adhere to the requirement that the substances in the products are listed from the highest amount to the lowest.

I mean, the silicone really makes products glide on so beautifully and there are a ton of other pro's for the way they function cosmetically.  It's an incredible new resource for the beauty world from makeup to hair to skincare.

My immunologist, however, said I many want to rethink that, given my extreme reaction with the sheet.  A first allergic reaction, as what I had with the strips, COULD lead to a more severe reaction with the second or third exposure to the substance. In other words, nature is giving a person a "pass" the first time around.  It may be nature's way of not killing off a person the first time, while giving that person a warning (i.e., the bad reaction) that something is off and not working...beware! Nature, evolution - whatever you choose to call it - may thus be offering a second chance at being smart the next time around and figuring it is the fool who goes back for a third or fourth time and Goodnight Moon!  Not necessarily so, but did I want to take that chance?  Had I forgotten the primer incident too?

Geesh!  Perhaps I really AM lucky that I'm bedridden...I don't need to go out much anymore.  Therefore, I don't need to make a decision as "to silicone or not to silicone": that is the question.

Groan...did I really say that?  I guess so!

But I definitely want to work with my Dr. Jart+.  That stuff may be joining my very tiny "hall of fame" keepers.  

You Never Get a Second Chance to Make a First Impression...

So doc, what do you  really want?

What to do?  Later this week I have an appointment with a head honcho at a major university medical center, a huge guy in the insomnia/sleep field.  As much as I'm hoping and praying for miracles and as much as I try not to get my hopes up, I just know we are in for a huge let-down.  On the other hand, all bases need to be covered since I am getting too old and too sick to deal with this huge sleep disorder without real help. I am really, really desperate. I don't want lip service.  I simply cannot afford it any longer. 

In earlier posts I wrote about the importance of first impressions with anyone in the medical field and just how important the almost superficial factors can influence the care you may receive, unfortunately.  On the other hand, I've also written about how you really do NOT want to look too good (if at all!) when going to a doctor because of the "fooling" factor.  On the one hand, I strongly believe my doctor needs to see what I really look like and what insomnia is doing to me, with no cosmetic concealer hiding the worst of the damage.   

However, on the OTHER hand, I've seen doctors who are .... humm ... well, just plain nuts, to put a nice spin on some experiences I've had.  One HUGE expert in CFS (and with him I'll use the dreaded and hated title because he does NOT deserve the "enlightened" title of CFIDS nor ME with his name) had so many facts wrong in the follow-up letter he sent me after my appointment that at first I thought he'd put another patient's letter in my envelope by accident. Understand, months in advance, his office sent me a questionnaire, along with a "request" for a multi-thousands of dollars check, due thirty days in advance, or no appointment.  I didn't really have a huge problem with the payment because I knew that a 35-year history of this illness was complex and how much money had we already spent on so much testing, treatments and so forth over the years?  Actually, because the questionnaire was so comprehensive, at the very least twenty pages long, asking every obscure question imaginable, down to even my grandparents (which impressed me to no end) and mailed to the doctor a MONTH in advance, gave me high hope that finally I'd found the right person. Wow!  He'd really be familiar with all that had happened over the decades.  The questionnaire was so long and complex that I could only answer a few questions, my brain fog, pain and a myriad of other problems forcing my hubby to supply and write down most of the information, which I then edited and checked over a period of a few weeks.  The FBI under J. Edgar Hoover was less thorough.

The mistakes in the evaluation letter were big as well as small.  Many were ones that would not have been made had he read my history, that is the answered questionnaire, while dictating his letter, or had he really listened to me in the first place as I spoke, actually listened to the answers I gave HIS questions and then had he jotted them down on paper during that infamous visit instead of trying to impress me with his new tiny laptop which he spent way too much time piddling around with as he tried to enter information. Furthermore, yes, I have brain fog.  Because my brain is so befuddled when I speak, as well as my well-established position in the strong belief of a health advocate, as well as for there to be no misunderstandings, my daughter and hubby were there with me to fill in anything I couldn't remember or was unable to answer.  This had worked well in the past, after all.

To make things worse than the huge number of errors in the objective aspect of this whole consultation, this doctor made very uncomplimentary comments - in the letter to ME - about my appearance that I shudder to think what he might have written behind my back had I given him permission to send any correspondence to any other doctor.  For example, I had worn a very simple, loose black dress because I was given instructions to wear loose comfortable clothing - evidently there was to be movement involved (there wasn't).  And I wore no makeup precisely so that he could see my true coloring but instead he wrote words in my report which basically read that I was a lazy, plain-looking woman who could not be bothered getting dressed up for him, nor putting on any makeup for him, and saying in fact that because of this, it was his opinion that I was depressed.

On the other hand, the next-to-last sleep doctor I saw said I was a very attractive, well-put together female who appeared NOT to be depressed as my hair was well groomed, I was dressed nicely and I had make-up on.  He added "slightly-overweight" and since I was, I had no qualms about him adding that. It was honest and I liked that.  Unfortunately, he'd never even heard of melatonin.

So, what to do?

Maybe I should just bring pictures to this new guy, give them to hubby and have him ask the doctor which he'd rather see, the good ones or the bad ones, as I sit behind a screen so he never sees me.  No touching is needed, after all - how many neurologists bother seeing what your reflexes are, or CFS doctors want to see if you also have trigger points, if your lymph nodes are swollen and so on.  Heck.  Maybe our appointments should just be by Skype, something that some of the younger doctors are seriously considering, insurance companies are pushing, but scares the HECK out of me.

What do you think?

The THING About Waiting Rooms...

Legs in training....

Since I promised to bring survival tips for my hoped-for readers, here's one 
that may appear to be a bit unorthodox but a real winner for me.

Anyone with any sort of chronic illness is very susceptible to germs and viruses 
from everywhere.  Obviously.  Duh!   With CFIDS/CFS/ME, our immune systems are 
hinky, thus the "ID" in CFIDS, the "Immune Dysfunction" syndrome part.  Our 
immune systems are over-active and under-active, both at the same time, so very 
contradictory in an illness full of contradictions.

I need to meet about every month or so with my long-suffering GP, who of 
everyone I've ever seen in my plethora of doctors over the past 37 years, from 
New York City across the good old USA, has been the best and most successful 
help in my care.  We make a good team, actually, as we've together tackled 
research and question seemingly everything that comes our way.  Some years we're 
gung-ho about learning every new thing, other years we just throw up our hands, 
give up and go into survival mode.  A small-town GP, he's more than a bit 
understanding and has more patience than I could ever dredge up, which is not to 
say we agree on all, but just that he's one of the best things that's ever 
happened to me.  Oh, he does sometimes see me as a bit of sport and I just know 
the man often revs me up to hear what will come out of my mouth next.  But 
compassion when need be, it's there!

However, I hate the germs and viruses that I seem to bring home each and every 
time I see him...or my dentist for that matter.  With my dentist we've agreed 
any work that needs to be done can start around April, once flu season is over, 
but must end by September, before flu season begins.  And the best part, 
perhaps, is that he's enforced these parameters at times when I've thought to 
myself, "flu season be darned," crazily thinking I was just too careful.

I can't exactly not see my GP, however, for so long.  So after many years, which 
included two serious bouts of pneumonia, we've worked out a system that seems to 
be the answer to some of the problems of my funky immune system.  My 
long-suffering hubby goes to the office, as I stay behind in the car with a book 
or my Kindle, signs me in, takes care of whatever finances need to be addressed 
and actually SITS in the waiting room for the moment when my name is called.  He 
then quickly runs out to the car and we go in through a back door, thus avoiding 
as many sneezing and coughing people as possible.

How I wish we had some sort of system like that when the kids were little and 
you'd take your children in for a "well visit," only to bring home three kids 
laden with chicken pox or some of the other childhood illnesses lurking in the 
pediatrician's office!  But I digress....

To tell you the truth I am always tempted to take some sort of germ-killer in a 
can and spray it at all within my reach.  Despite many outrageous things I HAVE 
tried, Lycol'ing my way to an exam room is even too much for me, SO FAR.

Yes, I may sound like a diva, but here is an example of why this has become a 
necessity.  I came down with a common bug going around one winter and was sick 
as a dog for two solid years.  Just as I was in the home stretch something 
strange happened to my legs...they turned blotchy and mottled with lovely shades 
of purple and red.  They've stayed that way for the most part, unfortunately.  
They are of huge interest to my doctors...they seem to love looking at them and 
speculating as to how the heck THAT happened.  I'm not so easily amused.  And 
poor hubby - my legs were what he'd first fallen in love with, only later my 
sparkling personality!  <wink!>

So, if your immune system is really wacko and you know that a needed or required 
visit to your physician may cause you to come down with everything down to the 
seven plagues of Egypt, consider my strategy.  Granted, it may be difficult to find 
someone in your life who's willing to sit in a waiting room full of sniffles and 
sneezes but it's a heck of a lot harder to come down with a bug that can take 
months and months to rid yourself of.  Plus I find that with each "flare," we do 
get more permanent damage to our bodies.  Ask my legs.

Laughing from my sickbed about my profile....

One  bad day in the mid-80's: hubby's idea of lightening the mood, a gorilla-gram!  I love that I have a bracelet on even when sick.

If I had any idea whatsoever as to what the profile questions were about, I'd 
answer them, no problem!   I really don't mean to sound mysterious.

I'm a wife, a mom and, I hope, a good friend.  My "long-suffering" hubby and I 
have known each other for 37 years, meeting on, of all things, a blind date and 
falling in love at, just about, first sight.  My first reaction upon seeing the 
tall guy in front of me?  "S*^t!  THIS is what I've been waiting for all my 
life?" and proceeding to answer no more than "yes" and "no" for the entire 
evening.  We've been married for 36 years and have three fantastic kids, who 
love their mom and dad's story of how they met and tell everyone about it.  My 
best friend of all time and I have been BFF's for an unbelievable 41 years.  

For a long time I had no idea what the heck was "wrong" with me.  We kept making 
excuses for my seemingly sudden fatigue and brain fog and a host of other 
problems that were added to my "what's wrong with me?" list as the years went 
by.  Eventually, about fifteen years later, I was diagnosed with Chronic Fatigue 
Immune Dysfunction Syndrome (CFIDS) from a severe flu I got in grad school in 
1975, commonly known as Chronic Fatigue Syndrome (CFS), a term my fellow 
sufferers and I detest.  If anything, I prefer the British name for it, Myalgic 
Encephalopathy (ME).  The British ME shows that in England, at least, as well as 
Australia, they take this illness more seriously than we Americans do.

Over the years as I've become more and more sick I've worked hard on trying new 
tricks and ways of surviving this illness.  I've been extremely lucky in that my 
hubby and kids have been so supportive of me over the years - and fierce in 
their own fights to help make my life a bit easier to survive.  

But most of all, the thing that has helped our family stay together and fight 
this beast is our gift of laughter.  And it truly IS a gift.  We've had our 
"challenging" periods and were it not for laughter I just know we would not have 
survived this DD ("dreaded disease, "darn disease," etc., you get the drift).  

I have no idea if anyone is actually reading this blog.  It often feels a bit 
like when I catch myself talking to myself - a genetic thing, I tell myself, 
because I do remember my grandmother doing so!  But I certainly hope I develop a bit 
of a following because over these past 37 years I've been able to come up with 
various coping techniques and tips that may help those with CFIDS, Fibromyalgia, 
insomnia, and, indeed, anyone who suffers from chronic illness, be they totally 
bedridden, as basically I am now, or still struggling to hold down a job, or at 
least some semblance of a social life.  

So glad if you've been able to drop in and spend a bit of your time with me.  
Please leave comments if you're at all inclined to do so and/or subscribe.  I 
will answer any questions you may pose and will enjoy hearing from just about 
anyone...it'll be nice if and when I'm no longer talking to myself.

Loving my wonderful Kindle....

In front of Big Ben: badly centered!
Amazon.com has simply got to be one of the greatest places on-line, perhaps even on earth. And here I speak mostly about books, although as I get used to the 
idea that Amazon has expanded into almost everything short of booking (ha!) 
flights to the moon, I'm begrudgingly accepting the shared wall space with 
"other things" <snarl here, please> when I go to their main page. 
I've been in love with Amazon since the late '90's, feeling extremely guilty 
because our town has a truly wonderful independent bookstore, a dying breed. In 
fact, if I can, I really try to buy locally as much as possible across the line.  
And local independent bookstores should definitely be supported. 

Plus there's nothing like getting to know your indie bookseller. Talk about 
recommendations! I well remember the wonderful years when I took my Christmas 
list up to "Words and Music" and Alan, between other customers, spent most of 
the day helping me pick out the perfect book for each person on my list. One 
year his enthusiasm for Angela's Ashes, a brand new book no had heard of as of 
yet - for my very Irish fellow CFIDer from our St. Louis days - knew no bounds.  
It was a very hard sell, but he was HOW right?

As I've become sicker and sicker I turned to Amazon more and more often. And 
when you are a severe insomniac, it's great to be able to shop in the odd hours 
when the world sleeps. 

When Strand Bookstore in New York went on-line, I also ordered from them by the 
huge - and heavy - boxful. They have the most incredible stock. What an 
unbelievable bookseller - I have been known to be the last customer out, with 
sales personnel literally pushing me out the door while hubby pulled. I make NO 
apologies...the store is incredible and when you first walk in, there is so much 
there that your brain simply fries. You need to allot much time for Strand. It 
takes a while for your brain to come back to normal. My notebook of books 
already read is almost a necessity, I find, because my brain never quite makes 
it back to normal after walking in.  On-line is definitely the way to go.

But all along the way I've been falling more deeply in love with Amazon...it's a 
growing love affair.

So when the age of the Kindle came, I was extremely torn. To say I love books? 
Oh, I don't even know how to convey to anyone how much. But the house was 
getting squeezed by them and since I could never part with any books no matter 
how lousy, and because there were no more areas in the house to build more 
shelves, Kindle started being forced on me. It was a matter of "buy more books 
but get rid of the same number of books in order to have some semblance of an 
orderly house," or resort to Kindle. 

Heresy! I was very conflicted. But any time there was a discussion of the new 
Kindle from BookSpan to Charlie Rose to "Good Morning America," my ears were 
glued to what was being said. 

Another complication in this decision making was that anything mechanical, 
especially electrical, which includes clocks, watches and computers, seems to 
die on me, or at the very least constantly breaks down. Hubby still tells anyone 
who will listen about how Big Ben stopped for the first time ever on August 5, 
1976 on our honeymoon. Let's just say Big Ben was working when my new hubby and 
I sat down to have a late sandwich in a tiny square near Big Ben and fifteen 
minutes later he wasn't moving. 

I used to have three computers in my arsenal: one for in the shop being fixed, 
one ABOUT to go to into the shop to be fixed and one having arrived from the 
shop FINALLY fixed. My family will not allow me to even walk by their computers 
because suddenly their screens would start to do weird things. I've even seen my 
middle child see me coming, grab his laptop and flee. Putting the final touches 
on his PhD dissertation from our home, he was not about to risk losing precious 
data brought home from Australia. (Picky! Picky!)

So, why would a person with my history possibly want the hassle of a Kindle? 
Well, in order to keep buying and reading books, of course - silly! Our 
libraries here are very good and hubby makes frequent runs there weekly, but 
some books you just want to own and some books simply aren't instantly 
available. 

Furthermore, for many it is a wonderful way to go. Some of us have trouble 
holding a book, after all, and a Kindle really helps if you want to continue 
reading.

Thirdly, a real problem with CFIDS and Fibromyalgia is the cognitive problems we 
have. As much as I love to read - a wild understatement - I must admit that 
there have been times when I've forced myself to read, just in order to keep my 
mind from atrophying. I can't believe I'm admitting this, but there have been a 
couple of times when I resorted to harlequin romances...I needed to read because 
I love to and I needed to read to slow the brain deterioration process. 

I often call myself a "moody" reader but that's simply code for saying that 
there are times I can only handle this sort of book, other times I can only 
handle that sort. "Chick lit" one day, Nobel Prize or Pulitzer Prize winner the 
next. And when I read "Wolf Hall"? I love a really long book. But holding one, 
as I mentioned before, is a different story. Finally, being able to match a book 
to your mood in just an instant really helps that pesky "mood" problem.

Anyway, a few months into the second generation of my first Kindle, the 
inevitable happened. I didn't know whether to laugh, cry or get mad at myself. 
Instead, I finally called the Amazon Kindle number to talk to someone and a few 
minutes later, talking to a really, really polite and kind young man, we 
realized that my Kindle was really and truly dead. Since the year warranty was 
still in effect (what WAS I thinking when I didn't buy the extended warranty 
with my history?) I was sent a new Kindle, free of charge. I just had to 
remember to mail back the old one within 30 days, which is not as easy as it 
sounds when you can do nothing, nor remember anything, yet ridiculously easy for 
the rest of the world. They even set it up for me by entering my old books into 
it and the heading on the top of the Kindle read "Irene's 2nd Kindle." Sweet!

Were we all in a group I might stop here and ask how many know where this is 
going! You may be right.

You see, the other night I received "Irene's 5th Kindle." To tell you the truth 
I was a bit uncomfortable calling about this fifth one...in fact, the warranty 
had run out. I knew the warranty starts anew with each new Kindle but I was 
just too plain lazy ("too sick" and "too tired"...remember our code words here!) to 
call and explain the dying process of my fourth Kindle. 

Finally, with the warranty over, I now had to choose from quite an array of new 
Kindles. Did I mention I have a hard time making decisions - a very typical 
CFIDS problem?  Well, finally Kindle number four died absolutely and completely.  
I was going to order a new one after much hemming and hawwing. But I wasn't sure 
that I'd be able to handle the library transfer and registration parts, so I 
wanted to order one from an actual human being. Amazon has them, you see...I 
suspect they're there to be amused by the senior crowd who have no clue as to 
what they are doing. 

I finally got around to calling. And in less than five minutes I was informed 
that by paying $60 I could have a brand new Kindle, the very one I was ready to 
put real money into. How amazing is that?

I must say that the support woman was a bit....shocked?...when she realized this 
was my fifth Kindle. I refrained from telling her about my Big Ben incident.

And England: I'm so sorry. I really didn't mean to hurt Big Ben. It was a 
totally innocent and unintentional act!  My sincerest apologies to all.