Friday Tidbits: Medicine 21st Century Style

The Offensive

It's been an awfully odd week. I finally felt well enough to go and see my GP.  It was a long appointment as we made plans as to how to attack a "new" problem I'm having.  This is the latest development in what I call the "something new is majorly wrong with me" problem that I've been concerned about for about two years now. We've been distracted from this hunt because of a few red herrings that got in the way, among them the compartment syndrome surgery, pneumonia, gallbladder surgery and abnormal mammogram.  We talked and planned as if it were all a military operation, deciding which specialists I need to see.  Before, it's been, "see this specialist to put out this fire, another one to put out another fire."  However, we all now realize that we need to actively go on the offensive.  Putting out fires is no longer acceptable.  Because of the military feel of strategic planning, as well as well as the red herrings, my mind thinks of this as "The Hunt For Red October."  It is just so much easier to give it a code name because "the figuring out what new majorly new huge problem is" is just a wee bit overly-worded.

Part of me is happy that we appear to now start planning by going on the offensive by making appointments. On the other hand, the realistic part of me is a bit anxious because I know that no matter how much I plan it all out, no matter how many appointments are made with doctors who have carved out times in their schedules to accommodate me (calling in favors) I will end up having to cancel some appointments - and that is not just embarrassing, but it also makes me feel like a second-class citizen.  For example, I'd made numerous appointments with my gastroenterologist and over the last two years I've had to cancel each of about five appointments at the last minute. I become so sick that were the house on fire, I wouldn't be able to allow anyone to haul me out of it.  The pain is just so bad that I can't allow anyone to be in the same room with me, much less touch me.   How does one ever explain this sort of pain, exhaustion, brain depletion, nerve sensitivity, and so forth that is the legacy of CFIDS/ME/CFS and/or fibromyalgia?

So, this is one huge problem. As optimistic as I am, the rational, practical voice in me says, "this I have GOT to see!" as in "how in the world am I going to be able to see all these doctors?" I need to see about five or six specialists at this point, PLUS get my breast biopsy.  Huh?  Really?  Seriously?  Good grief, I'm still recovering from the gallbladder surgery.

In the end, my GP, hubs and I did cover some of the realities of being ill in the 21st century.

• We lamented the fact that one can no longer be admitted to the hospital and have all the consultants come to see you. We remember the days when all tests could be run during your hospitalization, all in one big fell swoop.  Back in the day, the consultants would run into each other in the hospital cafeteria, the X-ray room, or corridors if they couldn't manage a brainstorming session. What now takes months and months to accomplish could take a week or less if it were done with a hospitalization.
• We lamented the fact that acute health problems like saving the life of a shooting victim or a liver transplant is done so well, but chronic medical problems are woefully badly done.  Everything is so wrong!  I had great care when I had my compartment surgery but because of my CFIDS/ME/CFS, fibromyalgia, insomnia, migraines, I could not make it to the hand therapy I needed, once released from the hospital.  The plastic surgeon could not understand that if he wanted me to have several months worth of tri-weekly sessions, they needed to be done at my home.  I couldn't begin to explain to him that even if someone came to the house I might not be able to handle talking to a hand therapist, much less have him touch me!   Forget the fact that all my organs had fluid around them (anasarka) and the urine in my bag was brown because the tissue from all my organs were breaking down (rhabdomyolysis).  Forget that I needed two blood transfusions to stay alive.  Forget that I had renal failure and pancreatitis. They STILL wanted me in the office and felt I was being difficult and non-compliant in regards to hand therapy.  (Note: I was released from the hospital too early and THAT'S why I ended up with the almost fatal conditions, rushed to another hospital less than 24 hours after coming home... in what world is THAT cost-effective?)

Yet when we said we'd pay privately for any hand therapy at home, the surgeon's office said that at-home therapy was "not in accordance with our business plans."  (Oh boy! Hubs still sees red every time he thinks about the hypocrisy and rigid thinking.)  Twelves months on, I have severe nerve damage and the inflammation in my hand is often not helped by anti-inflammatories. Oh those spoiled prima donna plastic surgeons.  You didn't see Dr. Hunk General Surgeon acting this way with my gallbladder.

• And finally: we think we have a large chunk of the falling problem solved.  Perhaps you recall that I'd spent quite a bit of time passing out and crawling about, not being able to walk even the six feet between the bathroom and my bed without hubby's help.  It turns out that the muscle relaxer I need was changed to the generic and THAT was a great deal of the problem.  The scary part was also how LONG it took to clear the generic muscle relaxer out of my system.  I'm back to my name brand muscle relaxer and after six weeks, the falls are almost gone.   I do have trouble walking around but much of that is due to the gallbladder surgery and whatever this new "Hunt for Red October" is about.

The day after seeing my GP was more difficult than I've had to undergo in ages.  I see that after going to see my GP a couple of years ago and describing that I'd developed a new pain, he thought that my pain was just like any other.  Because of the stress of the visit (and the side visit to the mall for new glasses) I ended up in the ER with the surprise diagnosis of gallstones less than 48 hours later.  After seeing my surgeon on election day, plus taking the time to vote and run up to TJMaxx, I ended up so sick that I was in the ER just two days later.  After this latest visit to my GP, within 24 hours I ended up calling hubs at work and having a melt-down because the pain was so bad, but I couldn't endure even the thought of another ER visit, knowing how I would be treated for an "invisible illness." 

So, I want to know, how, exactly, will I survive all these visits to specialists without being killed in the long run?  I wouldn't think that under the circumstances, a hospitalization would be stretching it.  But alas, the hospitalization for a good workup in order to get everyone on the same page and to establish what is going on has gone the way of the doctor's house call.  I think a large part of the population out there with "invisible" illnesses knows exactly what I mean. Yes?  Comments welcome, as always.

And that's it for the week.  I hope everyone has a truly great weekend, feeling their very best, only better. Ciao and paka! 

Friday Tidbits: 10 Beauty and Hospitalization Tips

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pain Management: The Unwanted Stepchild

This afternoon I started a completely different post on a completely different topic,  which developed into something that potentially affects all of us, not just those with CFIDS/CFS/ME and fibromyalgia, but in fact every human in this country, if not the entire industrialized world.  I thought to myself, "what the hey?  Let me go there first."  And the topic?  How to survive in a hospital and what our rights are.  Well, a bit more: as so many of you know me by now, there's always more!

Beginning in 2010, I had what turned into every parent's nightmare: that their "child," no matter the age, is found in a hospital and no one knows what is going on as that child gets sicker and sicker and, several times, comes close to dying.

Now there were a lot of reasons as to why I'd felt I knew my way around a hospital, not the least of which was that I've had more than my share of hospitalizations (there I go again with those pesky understatements!).  But you know, times change and they are not always for the better.

I get upset because we patients are getting an awful lot of doctor-switching and that is a big bugaboo of mine. If you recall the ophthalmologists vs. the optometrist experience in a previous post (described here) it's becoming a real problem.

You can now add to that list of doctor-switching, psychiatrists who are sleep and pain specialists who pose as neurologists, as I saw over and over again at "the major medical center" where my daughter had so many lengthy hospitalizations, complications, procedures and surgeries.  The chronic pain management people were always coming in and pretending they were anything but what they actually were: psychiatrists. To make things worse, they were always in some sort of "secret" war with the acute pain management people, perhaps the war actually causing the right hand to never fully know, nor understand, what the left was doing.

Oh how I came to hate the chronic pain people!  Why, you ask?  Because they would come in disguised as everything but what they purported to be.  They would very quickly give their names and use euphemisms. You'd (OK, I'd) spend half the time trying to get a good look at the regulated tag everyone wore around their neck but of course the darn thing would always be twisted around, completely unreadable. Finally I got the nerve to start asking for their cards as they left, which were given to me in a very put-upon manner, as if I were the unreasonable one, somehow conveniently forgetting that in the center's booklet given out to all, identification by everyone, including physicians, was clearly stated as a requirement - and in bold letters, if I'm not mistaken.   And I'd get upset, because upon receiving the card, I'd see that the person who I thought was a doctor from neurology or pain would be a nurse of some sort, though with a MA or PhD in some murky field I'd yet to have heard of, or a practitioner in a field I've yet to discover, or most often, a psychiatrist who said that he or she was from the neurology department, very much implying that they were neurologists, never ever mentioning psychiatry. The permutations were endless.

During a few hospitalizations, as the pain people came and went - many pain teams, never realizing a team had just been by, nor who the previous five teams that day had been, in addition to many other specialties - I had many questions each day, often during every shift, as someone was ALWAYS dropping the ball, usually many times during each shift.  At first I would say that there were huge cracks in the foundation.  Soon I learned that there was no foundation. Later yet, I learned that they couldn't even keep their vocabulary straight (the reason we all use words and those words have definitions, NO????)  because what they meant by ONE department was actually two departments and for all I know each of those departments were split into many parts.  But the misunderstandings, when I finally got to the point where I demanded answers, basically all went back to that they themselves never even understood the fact that they were using the same words but with different definitions. To illustrate what I mean, imagine the fictitious scenario I've described of a Brit and a Yank get-together about a problem.


-"Would you look in my boot?" asked the Brit.
-"You don't have a boot, you're wearing shoes but do you want..," answers/questions the Yank (who many indeed be a southerner, not a Yankee from the North!)
-"No, my boot," persists the Brit.
-"What???"
-"My car," patiently repeats the Brit, because all Brits are polite.
-"Your boot's in your car?" asks the Yank, puzzled, but decides, what the hey?  "Where did you put it?  What color is it?"
-Brit now looks looks at the Yank suspiciously and answers, "Why it's black!" wondering if all Yanks are so thick or if it's just this particular Yank.
-"Oh, OK," says the Yank, looking for a boot through the car's window and not seeing any boot of any color, wondering why in the world the Brit would want only one as boots do usually come in pairs.
-"What's wrong with you?  It's not IN the car!" cries the Brit, totally frustrated.
-"But you told me....!" answers the Yank, not understanding that a boot to Brits is what we Americans call the trunk - of a car, not an elephant, I hasten to add.

Had my daughter's life not been on the line and had she not been in such pain 24/7 for two years with very little relentlessness, remembering very little of the entire hospitalization periods, the aforementioned scenario would have been amusing.  But we're talking life and sanity here, not boots.

I was frustrated.  I wanted to know who all the people who were coming by actually were, with very loud voices, not using the "indoor voice" they had been taught in kindergarten if at no other time.  Did they think she was mentally handicapped?  Did they think she didn't speak English - and fall into that trap I most despise - if one doesn't understand the language simply yell loudly and the person will suddenly get it all magically!

As time went by, with each hospitalization becoming progressively more serious and more people coming around, I had many questions:

• Who were these people?
• Where were they from?
• What were their names?
• What was his/her position on the pecking order?
• Was that person's plan we'd just spent 20 minutes discussing the last word or would an attending over-ride the orders?  (It happened all the time!)
• Who was the attending?
• Would the attending stop by?
• Had they read over my daughter's chart before coming into her room?  (Answer: never!)

Now granted, the charts were long, due to all the hospitalizations and complications but "whoever" didn't need to run down those charts to some dark and damp basement.  They simply needed to look in the d*mned computer that the "major medical center" had invested many, many millions of dollars into.   Besides, one of the first things taught in medical school - after treating your nurses like gold - is to take a history and learn as much as you can from the chart. Rotations 101.

With each hospitalization, I'd come home steamed, exhausted not just physically, but emotionally as well.   As I lay in bed 24/7 trying to recover enough for the next hospital crisis in order to go with my daughter again in order to be by her side 24/7, I'd make plans as to how we could circumvent the problems we'd encountered. At every turn I wanted a positive experience, not a negative one.  The body needs and craves positivity in order to heal.  It cannot endure more tears, be they of frustration, be they of pain, be they of fear, whatever.  It was NOT a good situation, but short of going to the Mayo Clinic, we were in the only other place to be.  Besides, how much better, our thinking went, would the Mayo be if this place was just the same as the Mayo, down to so many of the doctors having trained there and vice versa?

I finally got to the point where I tried to write down the person's name in a book as they came in.  That didn't work very long as we had up to 5-12 doctors and their teams come by on some days.  Furthermore, the teams were constantly changing, especially once she got to the surgical building and not the medicine building.

My first break-through: embarrassing.  I'd left the room after who knows which doctor number had just "spoken" to my hubby, daughter, one son and me.  In order to not allow my daughter to see my tears when I saw that hubby's mouth had dropped open when he saw that things were much, much worse than anything I'd described, frustration-wise, I went to my usual "cry area" where no one could see me.  But in coming back a half hour later, with red eyes (and snot probably running down, not to mention the mascara!) two nurses at the huge hub, "everyone's station," asked if they could help. I told them, "no, thank you" several times, not trusting myself.  After a few of those "no's," however, I asked for the name and phone number of the CEO of the place, which they gave me and asked if they could help in any way.  Oh, they knew, trust me, they knew what the problem was.  And I think everyone regretted THAT question.

I then went into a very controlled but unstoppable tirade that only a mother who is scared to death of what is happening to her child is capable of.  I don't know if anyone remembers the old commercial, "When EF Hutton talks, people listen," and everyone in the commerical stops in mid-sentence, mid-step, etc.?

We had that moment.  Every attending at a computer, every Doc Jr., every nurse, every aide, everyone who was at the station, at least 30 souls, stopped mid-step, mid-sentence - you could almost hear the proverbial pin drop - and listened as I gave a synopsis, in a rather trembling but almost-soft voice, of all the problems we'd had and NAMED some of the people who had either lied to us, misrepresented themselves, given us misinformation, or gone back on a promise made.  One of my lines was that I was starting to feel as if we were all car sales people, buyers and sellers alike, each just trying to make the best bargain, in addition to a H*LL of a lot of other things which are a bit too personal to disclose here, but really popped open their eyes.  I really don't think anyone had ever spoken to them like that before, too intimidated.  In fact, many months later, nurses were stunned that I didn't fear anyone and asked me about it, wondered about it.  Why?  Because I feared the illness and nothing else mattered but that monster!

Whatever I said, it took at least a half hour: no one DARED stop me after they'd started it.  (Do I sound like I myself am in a school yard?  Maybe!)  "Baldy," my "name" for the doctor who'd caused my melt-down returned - and mind you, the name was not a disparagement - after all, I too am follicularly-challenged, but we always needed a way to distinguish one person from another in the crowds of people coming and going.   Everyone had staring at his back as I gave my "account" of all the pain my daughter was going through and he came back to the room and meekly discussed everything we had wanted just an hour before, needed and tried to do before the tirade.  Attitude change anyone???   And he must have ended up red-flagged her file somehow (writing "deranged mother" perhaps?) because the problems ceased for two days - bliss!  We could actually all concentrate on her illness.  It was all we needed and what my daughter was due.  And it lasted until she needed that emergency surgery.

And the emergency surgery highlights another aspect of this whole situation and this hits close to those of us with the DD.  Just as she was about to be sent home, yet again, my hubby called her attending from home (after I called sobbing to inform him of this latest development) and said that he simply would not allow her to come home.  By this point, only six weeks since that first day of my driving her to the ER ("Mom, are you SURE you're not going to crash the car?" - this despite it being only a 10-minute drive, but understandable because I hadn't driven in about ten years).   She'd been hospitalized around 5 times, then sent home, only to return back to the ER and a hospitalization a couple of days later.  

There was, hubby insisted to the attending, something deinitely wrong and they were going to find it because she could not continue to be a human yoyo and furthermore, we knew her warts and all (99% good, just a few tiny warts!) and one could count on her having a high pain threshold.  It was hubby's finest hour, in my eyes, especially because when a final test was run yet again for 20th or so time, and as I was actually starting to pack her bags for the ride home, the radiologist called up to the floor in a complete panic: THIS time they found a newly-formed perforation in the colon which had developed overnight and you can bet that at that point everyone started hopping as they prepared her as quickly as possible for the unexpected emergency surgery.  

And I do want to make it perfectly clear her surgeon was a genius, talented, kind, compassionate and what one could only pray for, checking on her twice a day every single day she was at the "major medical center," from the very first day, even as we all still held out hope that it would not develop into a surgical situation. This is definitely NOT willy-nilly doctor-bashing or hospital-bashing at all, simply presenting the way it is.

So, the reason for this tale, this painful rehash of what our daughter went through?  This was a situation that was cut and dry: you see a completely diseased colon and you could then deal with it.

However, we, those of us with the DD, with the invisible illnesses, show little.

And this treatment, which my daughter had to deal with along the entire way, even after surgeries and between surgeries, highlights how lightly the pain issues were taken. Instead of the true monster, that of her vicious atypical hybrid never-to-have-been-seen before Crohn's/ulcerative colitis, a real killer which even included a sudden bout of pancreatitis, the aspect of her health which got all the attention was pain.  Pain is EASY, folks!  It is known.  It is a matter of finding a doctor who has the chutzpah to make the calls.

And so, this is a very real and true example of how we patients must continue to insist on our rights, as well as expect the respect that the doctors listen to us - if we treat them with respect in return - and that we must know who that person we're dealing with is, what his role is, what his pecking order is.

My daughter was considered a drama queen because she came in with pain, a lot of it, brought on quickly, this despite the fact that she'd lost 45 pounds in 25 days - a documented part of her hospital record, not a part of an oral history given by her mom or dad.  She was in and out of hospitals several times before her wonderful local GI realized that this was serious business and transferred her in the middle of the night, using up favors to get her there, knowing exactly what would happen, in fact telling me what would happen as I pleaded with him that NO! this would and could not happen to my baby, please!  

To add to the pluses which we had in spades, and, which in the end well outnumbered for the most part the really, really bad luck she had along each stage of this monstrous illness, they even happened to have a major international conference on GI diseases there during one of her stays.  I later learned that her physicians curb-sided with their international colleagues in order to find out what others thought was going on - a case so unusual that no one had seen the kind of progression her sudden onset had taken, the atypical hybrid she was presenting.  It was a mess.  But the GI people worked it!

However, the pain management people, were, quite frankly, a joke.  Why?   First, because pain is simply not "sexy" in terms of bragging rights, nor in bringing in the money/funding.

Secondly, and perhaps most importantly, how does one see pain?  How does one assess an invisible illness?

At any rate, this is something I've been thinking about today.  OK, stewing about, now that I've written about it.  The wounds are barely scabs and I'm not sure they'll ever heal over because...heck my daughter almost died and we were all praying that she would somehow survive: on top of dealing with a lot poop that should never ever have been a problem, much less a problem from one hour to the next for the most part.

As someone tweeted not too long ago (there ARE good things about twitter: who knew?) - acute problems are well done in this country.  Unfortunately, chronic conditions, not so much.  This is something good to think about as well as good to keep in mind if it's your misfortune to end up in a hospital.  In the meanwhile, I hope these issues and thoughts help you further understand your rights as a patient.

And finally, I hope all are doing as well as can be, only better!  Ciao and paka!

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!

But Wasn't Easter LAST Week?

Painting by Boris Kustodiev, with Kulich and Cheese Paskha in the background.

I finally understand why in Victorian and Regency England, which I’ve read about as far back as I can remember, women of means had a day each week which was designating as their "visiting" day.  A "lady" might declare by some reason which day (or days) it was that she would receive visitors, with reasons and rules so complicated that my fibro brain cannot recall all the aspects as to how this was decided, and I do not have the energy to do much research about it, simply to make a few points in this post.  (Sorry! Fibro brain and weary CFIDS body, unfortunately, rule.)  

But I always found the concept of a visiting day and the etiquette involved fascinating because it was all so multi-faceted. The butler, of course, was there to accept a visitor's card on a special tray if the lady of the house wasn’t "in," even if she was, actually, at home. There was the placement of the card on a special tray and I always loved all the wonderful crazy-sounding details as to how the card would be placed, if there was a fold put on the card, and if so, in which corner it was made.  Like everything else in Victorian England, all had a symbolic meaning, from the flowers that whoever gave to whomever, to the "simple" art of calling on one another.

Well, today I suddenly, finally, really and truly understand the beauty of the visiting days and calling cards.  I’ve been feeling extremely "awful" (what other word describes so much?) this past week, the second one after my run up to get my hair, etc., done.  I’ve had my traditional Russian Easter recipes lined up and a list of groceries made up for hubby to buy from our local Kroger’s, as well as from the little Italian store that I suddenly realized might actually carry the farmer’s cheese for the "paskha" I would be making.  (I wouldn’t actually know because I’ve never been there and I haven’t been to a Kroger’s in at least two years, mind you.)  Hubby had found the missing Paskha mold a couple of weeks ago, which, I tried to convince myself, was a promise that somehow I would indeed be able to make the traditional Russian Orthodox Easter foods this year, that my adrenaline would, indeed, finally kick in. 

And it’s been especially significant that I do the traditional cooking and baking this year, as a symbol, if for not other reason. Last year, the first year I skipped this ritual in the 37 years I've been married, we were at the "major medical center" with my daughter just as my hubby was at our local hospital for a relatively minor operation - an emergency surgery that he was taken into just as my middle child and I were trying to catch up with the ambulance taking our daughter up to the medical center hours away from us with yet another death crisis.  Given that it was hubby’s first time in a hospital ever, that he was so worn out from running to and from hospitals and work, that his condition had become so "advanced" that they kept him in the hospital for several days, I was feeling really guilty that hubby was in the OR while my middle child and I tried to figure out what was going on in another city with my daughter. There is no end to reasons for feeling guilty if you’re a mom - it simply comes with the territory. I had to deal with some very ignorant doctors – monster arguments which even frustrated our principle doctor, her surgeon - who simply would not listen, teams of docs coming in and out….  Let’s just say, it was an awful time which, hopefully, someday we’ll all be able to laugh about.  I remember writing to a friend that no, this year I’d not made the cheese paskha nor kulichi and that if someone had spoon fed me those foods just after Easter Sunday as we had finally arrived home, I would not have been able to hold the food in my mouth and swallow, I was that overwhelmed, worried, depleted and exhausted.

But last night I had a melt-down.  I no longer remember what it was about, nor does it really matter. A lot of (relatively) little things went wrong and by the end of the day I couldn’t take it and just lashed out.  Hubby and I both realized that the reason for the disagreement had no relevance to the argument.  We both realized that it was because I was still upset that the appointment with my new sleep doctor had to be cancelled last week and that I was having a particularly harder time recovering from my "beauty day" than either of us had anticipated.  But the final blow: we both realized that with each day that passed this past week and me still not able to take a shower nor wash my hair, my sleep cycle being no sleep cycle at all but catch what catch can, the chances were getting slimmer and slimmer that I’d be able to do any Easter baking and cooking.

And just now, the blow that really hurt, though I’ve not decided exactly how and why.  Hubby really hated to ask me this since he knew how this would hit me.

But first, let’s go back a few years.  Ok, more than a few years, back to Easter 1988 or 1989, thereabouts.

In the Russian Orthodox Church, to put it simply, we do nothing the easy way.  We don’t even have pews in the church, and our Sunday liturgy goes on for a good two hours.  Depending on how slowly the priest speaks or how fast the choir sings, the liturgy can go on for way over two hours, and often does. There are folding chairs around the sides of the church, for those so sick that they have to sit down.  Given that there are women who are 90 years old and they do not sit, even when I was pregnant, I never had the nerve to use one of those folding chairs.  Don't even argue with the senior crowd on how "hard" this is because they are the first to point out that we "Americans" can go to cocktail parties and stand the whole time without feeling any hardship.  I guess point taken?

But doing everything the hard way seems to be our creed and I think we perversely enjoy it. That’s not to say that we don’t enjoy ourselves. We come and go all willy-nilly, in and out of the church.  Oh, we don’t turn our back to go out, it would be disrespectful to God to do so, just as it is too disrespectful to sit in His presence (hence, the no pews).  But we sure do a lot of walking out of the Church backwards and go out to have a bit of a first round of "catching up" before the end of the liturgy, whenever THAT might be.  For those of us under the age of 60 or so (because those are the ones born here, so we’re the radicals!) we try to time our getting to church after the Apostles’ Creed, yet before the Lord’s Prayer. Growing up, I always liked to arrive after the Lord’s Prayer since I still had enough time to get sick from the incense, pass out from the heat of so many people in such a small environment, but my mom always preferred risking me passing out or barfing, so before the Lord's Prayer it was.  When my kids were in Russian Orthodox camp, they used to love to keep count of the "fall and barf" tallies and still remember those days of standing in the sun very fondly.  How can you not love such a church? What traditions!

Anyway, it was Easter of 1988 or 1989.  On the whole, we tried to make an effort to go to our local Greek Church as regularly as we could, especially given that I was usually too sick to go to church and poor hubby, who took the kids to church was neither Greek nor Orthodox, puzzling and confusing some congregants, rightfully, to no end. This was all because I had yet to find the RIGHT Russian Orthodox Church that would do - we’re all full of various factions, as to which immigration "wave" we’re from, the kind that has "Outside of Russia" included in its title, etc.  "Our kind" could never accept the pews. Thank God the Greeks, and Ukrainians as well, have gotten over the pew issue for the most part. There’s a Ukrainian Church in town, but it’s a Ukrainian Orthodox Catholic Church. You’d think that would be a great compromise for me, given that my hubby is Catholic, and really, I am ethnically Ukrainian, but for all too many reasons, I feel closer to God in a Greek Orthodox Church.  I know: this is precisely the kind of thinking that has had nations go to war with religion at the center, throughout history, and will continue to, I am sure.  But understanding that hasn’t changed me much!

Anyway, I’d been feeling very far from my roots and that Lenten season I decided I would prove to God how much I loved Him and my church by doing the whole Lent bit.  I so love the relatively new word "vegan." Growing up in the Virginia years of my life, I would always have to explain to my friends why I couldn’t eat anything animal during Lent. This took a lot of explaining and I've never really understood how much Protestants understand the concept of Lent. My one Protestant experience was a Seventh Day Adventist boarding school (long story) and since we didn't eat meat there, that became a non-issue for me come Lent that year.  The Virginians of that early era, however, certainly didn’t understand the concept of no milk, cheese, nor eggs. The no-meat was a bit weird to them, but hey, I was a "Russian" and they all knew that the Russians were a dubious group at best.  In fact, most were often left scratching their heads over how I could be a "Red" or "commie" and someone who went to Church regularly. (And no, for those not used to my occasional sarcasm, I am not, nor have I ever been, a member of the Communist party!)  Enlightened, Hopewell, Viriginia in the early ‘60’s was not, a place that had little patience even with Catholics, so the rest of it was way over their heads. Now all that is covered by the word "vegan" and that, in and of itself, makes you sound so virtuous and admirable almost - even in a society that often simply gives up chocolate for their Lent.

So feeling that particular year that I would do the whole Lent bit, I went "vegan," normal Russian Orthodox operating style.  Understand that my doctors, who were still not sure what was wrong with me, but knew I was definitely sick because by now I’d had two abnormal spinal taps and was in the hospital approximately every two weeks, each time for a two-week stay, had long ago given me strict instructions that I was not to do any Lenten dietary restrictions.  But what do doctors know, right?

That Lenten season, I was feeling so virtuous, and looking kind of good, weight wise.  The kids ate their normal diet with a few restrictions I’d thrown in, the same for them as with how I was raised. But I felt my doctors were wrong about the dietary restrictions because my grandparents, who had died in their early 90’s at a time when people just didn't live as long lives as today, adhered to every one of the four Lents the Russian/Ukrainian Orthodox Church "required."  Besides, my philosophy went, I was made of strong stock: if Lenin/Stalin and then Hitler couldn't kill us, then what harm could going "vegan" possibly do?

I wish I could remember what the heck happened.  Honestly, after so many decades of being sick it’s hard to remember which year was dominated by what, but it had to have been bad because late on Good Friday after church, I was admitted to the hospital from the ER. The next day my doctor came by.  I have to admit that he and his wife were our very good friends so he had a heads up on what was going on in my life, as well as in my head.  I think he probably realized he’d had no meat the last few times he’d had a casual meal at my house and that going to dinner at his house, I’d not had any meat.  Actually, he had given me an informal lecture about it, but I decided to turn a deaf ear.  

So, my neurologist walks in the room, steam practically coming out of his head, and opens with, "do you realize I’ve seen Bowery bums in New York with better blood results than what I just found with you?"  And thus another lecture began.  "I've just spoken to the dietician and they are sending up a hamburger right now, and you are going to eat it." Given that it was about 2:00 in the afternoon on Holy Saturday and that Lent officially ends with midnight, when Russian Orthodox congregants all over the world stop and say (in their various time zones, of course), "Christ has Risen" and we all repeat, "Truly, He has risen," I really wanted to negotiate those final hours. 

"And no! No eating some broccoli with some cheese slapped on it will do," he preempted me, knowing exactly that I would try to get past the meat part.  Until then, other than a few Lents when I was really sick or pregnant, I did manage to be vegetarian. We bickered for a while, him trying to make me understand how truly sick I was, me trying to explain that the damage was done, him trying to explain we were talking about me being close to death here.  Sheesh!  What drama!

Finally he left with the words, "and God help you if you don't eat that hamburger when it arrives here. People are going out of their way to deliver that to you - the least you can do is eat it when it gets here.  You’re not out of the woods yet, but you don’t need to sabotage yourself further."  

Oh yeah, he had me shaking in my shoes: not!  With that he departed, me wanting to say, "Duh, I know this is bad…you have how many IV’s running through me right now???"

Finally, the hamburger arrived. I looked at it dubiously. It didn’t even look very good, adding insult to injury about breaking the fast.  My gosh, I thought, at least I should be "cheating" with some meat that looked and tasted heavenly (pardon the pun) not with a burger from a hospital kitchen.  Deciding that I wouldn’t be able to put it off much longer and that my nurse would soon arrive to see if I had eaten the darn burger, I took one bite in my mouth and started chewing and…

…it tasted awful.  But worse, I looked up and there was my priest!   Bless his heart, but he thought he’d run by my room quickly before the whole Easter process started at 11PM.   At our local hospital the beauty is that it doesn’t matter if you want your local clergyman to stop by or not: they do so anyway, regardless of what you check on your admission form.  At the "major medical center" I hunted for the chapel many times, followed arrows and after seven long stays, can tell you that I never found it.  But in our little town, by golly, you got your clergy whether you wanted to or not – and I love that.  When we asked for a clergy person in that medical center, it was only with the "Palm Sunday" visit that we had anyone come by.  Sorry, but I happen to think that when in a hospital, clergy should be accessible if you want to go that route too, especially with the principle that "there are no atheists in the trenches," and I certainly do like my clergy there, although perhaps not so much in that particular year on that particular Saturday just hours before Easter.

I looked up at the clock and saw that it was 6PM. I was only six hours away from having done Lent "the right way."  So close and yet so far, you might say.  Father didn’t bat an eye and made the motion that I should keep eating, and prayed over me as I choked on that burger. We’ve never spoken about it but I’ve always wondered what went through his head that day.  I’ve never even had the nerve to see what Lenten restrictions the Greeks hold.  None of it mattered, of course.  God knew what was in my heart.

And that’s what hurt, because I KNEW what I had in my heart. I was actually trying to probably make a deal with God and I should have known from my Orthodox upbringing and my Catholic education as well as my one year of living the Seventh Day Adventist life: God doesn’t make deals.

And so today, when hubby asked me the question that made me go into a tailspin again: our new priest, whom I met sometime just after the new year, not too long after my daughter had had her (we pray) final surgery when we asked him to come bless our house, called hubby and asked if he could come by and bring Holy Communion for me.  We’d had a rather long discussion when he was here that January day (the poor man: we didn’t realize that he and his wife had just had their first baby weeks ago) and he learned how badly I felt that I couldn’t make it to church on Sundays.  

But how to explain that you feel so sick that you can’t have someone come up to give you Holy Communion in your own home on that most holy day in the Eastern Orthodox Church?  That’s a hard one – for me.  It’s my baggage, I know.  I have to get over it, I know.  I know that I need to remember that God knows what I believe.  I have to believe that I’m doing the best I can.

But today I sure do wish there was a butler at my door who could have taken the priest’s card and told him I wasn’t in to see visitors that day.  Hubby will have to do it for me, since he’s the one who spoke with my priest in the first place, and I don’t envy him that. Both understand, I know, even as I try to put on a brave front and wish things could be different, feeling guilty because my daughter is now healthy.

And because the big things ARE good.  But it sure hurts to not be able to join in with traditions you so love and believe in.

(Христос воскресe, Christ has risen!  This to those who do celebrate Easter, but most years have to wait the extra week or weeks after the rest of the world has celebrated their's.  Bring on the sugar, meat and dairy products and ENJOY!)

Painting by Boris Kustodiev, with Kulich and Cheese Paskha in the background.

Laughing and crying about beauty and medical centers...

The wedding dress bought at B.Altman's, 1976.

Laughter. It's sort of what I've always been "famous" for in my family.  But it was on Friday, August 13, 2010 that started me on my path to laughter which would make a world of difference in our family's life. We'd always laughed, but never under such trying circumstances, an understatement.

You see, my daughter spent many weeks in hospitals in the past year and a half, starting on that dreaded Friday the 13th, with many long hospitalizations.  It was absolutely the worst time in our family's life, bar none.  Not to put a damper on things, but we almost lost her, more than once, and are still in a state of shock, all of us trying to recover from the nightmare(s). It was a relatively rare disease and though we were fortunate enough to have had some of the best doctors in the country on her case, finally in a hospital that's ranked number two in the country for her illness, even those doctors were stumped, the ones at the medical center she was suddenly transferred to one night during her third local hospital stay in three weeks.  They, the world's experts, had never seen anything quite like what was happening to our daughter. It become so horrid that on one particular day I remember about twelve doctors coming by with their teams of residents and fellows - during her fourth hospitalization there, perhaps?  It was such a madhouse that there was a backlog...the docs and their teams were lining up in the hallway, awaiting their turns. Never had I seen a sight like that before, or since, anywhere!

I can laugh about that day now, but at the time it was very frustrating, scary and maddening.  My daughter was so ill that she remembers almost none of this, but when she could talk to where we could actually understand her, she was definitely not the sweetest thing to come along.  She'd always been healthy and perhaps did not have the skills needed to endure the repeated tests every single day, twice daily, swollen arms and hands from so many "sticks," the weight loss of 45 pounds in just 25 days because she couldn't even swallow water.  On the other hand, who does have those skills?  Her pain threshold was supreme, something that her pain management people woefully did not get at all. Having been in the pain field as a patient and knowing more than a bit about it myself, as well as having access informally to very well-informed medical sources to check my supposed knowledge, it'll be a long time before I can forgive some of the docs involved in her case, as well as more than a bit of misinformation, on every one of her seven hospitalizations in that medical center alone.

But my reason for writing about this?  Well, I'm trying to make my posts shorter so I'll come back to other reasons in the future.  I'll just make one, (or two?), observation at the moment.  And that is...

First impressions, added with laughter and inside jokes, count!!!  I cannot believe the difference in "attitude" I received by staff, be they nurses, aides, "junior docs" or attendings, by the way I looked!  I realized this quite early on and it was maddening, but like everything else at the "medical center," it was trying to play the game - of Life! - to your best advantage and for extremely high stakes.

First of all, let me say that there was no one more surprised than myself that suddenly I had this energy to stay with my daughter every single day she was in the hospital, not leaving her side 24/7 unless another family member was there to spell me - her dad or one of her two wonderful brothers. It was a complete family affair, I'm proud to say.  If they weren't able to be there, I'd pick someone and put them on notice that I was making that person responsible for the minutes I was away.  In all of this insanity, my maternal instincts kicked in full-speed ahead and an extremely productive and dangerous lioness came out.... A crazy one at times.  I'm still angry with some of the physicians whom I had extreme arguments with...who will, most probably, forever be on my "poop" list.  I'm a mom...what can I say?  Worse, I'm a mom with an education, learning skills, an inability to be too cowered by authority and armed with excellent sources of medical information, often better than the ones at the medical center.  Unlike most, I was not scared of anyone or anything but my daughter's disease.

On the other end of the spectrum, there are the incredible physicians, and one surgeon in particular, who literally saved her life and then gave it back to her in a way that is enabling her, as well as the rest of the family, to have a life definitely worth living and enjoying.  I thank every guardian angel, human or otherwise, for having been there and who continue to help our entire family.  God's best idea: Guardian Angels - after daughters, that is.

But back to first impressions!

I've always known that the way you look affects the way people treat you.  It's a fact of life, sorry to say.  I first tested this at B. Altman's, one of my favorite 5th Avenue department stores, back in our "salad days" with my new hubby.  One afternoon I happened to be browsing, looking at coats specifically, and not one sales person came to ask if she could help.  Usually, you get eons of salespeople when you just want to be left alone to actually think.

Walking back to our apartment (the 50-cent bus fare was just too much for our budget) I started dissecting the no-sales-lady experience.  By the time I got home, I realized the problem.  I didn't look like a bum but I did look like a student who had no way of affording anything in the store.  Everything about me that day screamed "student": the pulled back hair in a barrette, the very little makeup, the jeans.  Understand, this was the mid-70's - a time when many restaurants in New York City wouldn't allow a lady wearing an elegant pantsuit to enter their premises, so imagine the impression of jeans in this very "establishment" store!

I was a bit heated about this and just couldn't let things lie.  The following day, I rolled my hair (no blow dryers available yet, nor any good hair products), put on my makeup very carefully and especially elegantly (though how elegant can a 24-year old be?), my nicest "outfit" with the buttery suede jacket and the beautiful brown high heeled boots I'd splurged on in Rome (yes, Italy...it was a chartered flight!) and faster than you can say "prego!" I had, at the very least, five sales ladies come up to me, immediately, in the very department I'd browsed the day before, each one trying to tempt me with other coats I might not have noticed.

That lesson has always remained with me.  I tend to have a weight problem due to this DD.  In my better times my weight is good.  I'm not thrilled with it, but I can live with it.  But I always say you can tell how I'm doing by my weight.  In my worse times, my weight starts getting up there.  And believe me: people, across the board, in every aspect of your life, treat you better when you're thin than when you're heavy...from the person at the supermarket to doctors.

So, when my precious daughter got so sick, you better believe I forced myself to dress in a friendly fashion, even going so far as wearing different cool boots or a cute handbag or fun watch which inevitably I'd get a reaction to, making the interaction that much more human and friendly, leading, of course, then to laughter, often breaking the tension.  And that was one of my prime reasons for being there.  I tried to make my daughter laugh as much as she could handle, even if it was at my expense or me playing the fool.

I learned to leave my daughter's side about every 24-48 hours when I started to get a bit ripe and in twenty minutes I could get to the hotel room, shower, do my hair, put on vast amounts of beauty products to get the new no-makeup look, pat just the tiniest bit of lovely scent on me and rush back to her room.  Twenty minutes!  I can't even wash my face in twenty minutes on a normal day, but my daughter dying gave me strength that I truly believe Clarence (remember, I recently named my guardian angel?) and God gave me all those weeks and months.

But I'd like to add that there were a few days when I looked far worse than anything any cat could drag in.  Those were the days that I was not noticed, totally ignored and not made a part of the discussion of what was happening.  Coincidence?  I think not.

So, my advice to all:  first, everyone who is ever in a hospital needs a health-advocate. This is PRIME!  Mistakes are made, staff gets overloaded, "junior docs" don't read charts, attending's can all too often be aloof, arrogant, or worse, clueless, especially in a place so large where the left hand doesn't know what the right hand is doing.  You absolutely need someone there at all times to help your loved one get through the whole process - hopefully, alive!  (And yes, I do want to have a long and in-depth discussion with the CEO of the medical center - not to be too hyped up on myself, but I do think he could learn a few truths about what is really going on in that establishment. Much good, yes, but there is bad too: very bad.)

Secondly, I've forgiven B. Altman's for the way they treated me that day I wore jeans :). I mourn the day they had to close that wonderful institution.  After all, I even bought my wedding dress there...and it was a very classy experience, certainly too classy for this young girl on a very limited budget.

(And if anyone wants to experience a great read of B. Altman's in their heyday, there's a wonderful book by Adriana Trigiani, Lucia, Lucia!, a fun and sweet novel which describes New York in 1950, living down in "The Village," and working in the couture department of B. Altman's.  Any guys out there may want to give the book a pass, but it's a bit of magic for the gals out there.  Not too off-topic, am I?)

But the biggest advice I can give here: keep up your sense of humor. Each person, from the transport people who would wheel my baby in her bed down for tests, to the nurse's aide who got my daughter addicted to some sort of banana Popsicles, to the night receptionist who loved to joke with me about our mutual love of the smell of new leather, to the Ukrainian nurse who held my hands in those first days when I knew absolutely nothing about this illness - had never even heard of this darn thing - when we joked about whether Russians really couldn't understand Ukrainian or were they pulling our legs? (as we spoke in Russian and not in Ukrainian), to the EEG technician who talked to me about the Russian Orthodox church nearby (that I never, regretfully, got to) and then went through our six degrees of separation to see who we might both know in the nation-wide Russian-American community, to the Romanian aide who would try to get my daughter to do all that walking - and talking about the foods she taught her daughter to make, to the Romanian cleaning lady who told me that my smile was too beautiful to sacrifice for tears...everything was made more endurable with humor and laughter.

Well, that and a bit of mascara.

Crying from my sickbed about another senseless CFIDS death....

Today I'm mourning the death of yet another victim of this monstrous and all too often fatal "syndrome" which too many doctors, health professionals and even friends and family are simply ignoring and/or, perhaps worse, refusing to believe in.  I did not intend to make this blog a place for downright preaching, perhaps because it turns so many people off of a topic that is often way too hard to stomach, and most definitely hard to understand and believe.  Today I'm crying because I've just learned about the death of a young woman whom I never knew, never even knew she existed, but have since learned how much she was able to accomplish in her short and tortured life: and make no mistake, she, as well as well as thousands, some suspect millions, are living a life of torture, for that IS what CFIDS/CFS/ME/Fibro is, "TORTURE." And yet she managed to somehow accomplish so very much in her short life, volunteering from her sickbed for the youth who have this illness as well as writing a guide to this illness for sufferers, a book which was well-received.  

After crying earlier in the day, I got angry.  I'm angry that this illness is still marginalized and I'm angry that funding is barely available for research and that the allocated funds in the past have also been "misdirected" to other places and mired in scandal.  It is disgusting.  Period.  Criminal.  Period.  Immoral.  Period.  Tragic.

Emily's family asked that the last letter she typed into her smartphone over a period of weeks when she still had strength be posted by anyone who cares about this illness.  Her words are so eloquent that I am proud to be able to place them here on my blog.  I am sorry for those of you who are uncomfortable with the "dirty" part of this illness, but this is one day that simply cannot be left to laughter.  

For those who would like to learn more about this brilliant young woman, the link I have here should give you more information:  
http://www.meassociation.org.uk/?p=10880

And now for Emily's so eloquent appeal:

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME. 

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. 

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly. 

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison. 

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate. 

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. 

Many days I feel utter despair. 

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. 

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change. 

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others: 

Please put an end to the abandonment of people with severe ME and give us all real reason to hope." 

How many more deaths will it take before something is done about this "syndrome?" Too many have already died and yet it continues... Царство тебе небесное...may you rest in peace, Emily.  (1981-2012)