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! 

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 skin care.....

Can you tell my BFF picked out this picture for me?  I can!

Color me lazy.  I suppose I've been blessed by good DNA when it comes to wrinkles and such because I've basically lived with little more than good old Dove soap as just about my only skincare.  Oh, I bought LaMer, a ridiculously expensive cream worth every penny for my face too, but I can't say that it's helped a HUGE amount - only because I don't use it on a regular basis.  It's wonderful, wonderful.  I love it.  And its more expensive, but even more effective "The Concentrate," has helped me out of a few jams over the years when need be.  

But the new beauty thing these days seems to be about skinCARE!  Who even cared about skincare until about the last five years - or even less?  No one!  Well, perhaps a few hippies in California, but really, did they even count?  We had makeup, by golly, and we used it liberally.  There was a time NO one saw me without my war paint on, not even my ob/gyn when I delivered three ten-pound screamers.

It's truly amazing how much "paint" can accomplish.  About a year ago, I had a regular appointment with my GP and found that after my shower/bathing ordeal, I actually had a bit of time and, better yet, energy on my hands.  What to do?  I really, really hate to sit around.  Lie around is one thing, but sitting around takes precious ENERGY.

Well, I thought, let's put on some foundation.  And trust me, I really do need foundation. My freckles, let's face it, are, at fifty-plus, not freckles but age spots!  And I have always hidden them... well, once I reached college and was out of sight of my old-fashioned and very strict mom.

So I thought to myself, let's shake the heck out of my long-suffering GP.  He'd not seen me look anywhere near "good" in over a year.  A girl remembers these things, you know.  A little later, bored by the extra time, I thought I'd put on some eyeliner too.  That's getting towards the "big guns" and a real pain because the hand's not too steady any longer.  In fact, if hubby is helping me get ready and sees the eyeliner in my hand, he know to flee.  Nothing puts me into as foul a mood as putting on eyeliner.  It used to be something that took no more than two minutes, if I were having a bad day.  Now, darn it, the eyesight is going too, so that makes it an even harder job to accomplish.  Magnifying mirror is not enough...worse mood.

After about two hours of paint, rest, paint, rest, I was looking pret-ty dern good.  That Nars illuminator with the Bare Escentuals Radiance worked beautifully together but I know I'll never be able to reproduce the successful combination...sigh.  

I had my appointment and as I was leaving, my doctor said, "you are looking really good today!"  I've never, ever been able to take a compliment graciously - mostly because I'm looking for some sort of hidden smirk behind the compliment.  After muttering something inane about how it took me two hours to achieve this look (how embarrassing is THAT statement?) I suddenly remembered that there WAS something I forgot to mention, a new, big pain.  Understand I live in pain every day, but this was new.  OK.  I get new stuff all the time too, but this actually got MY attention, somewhat of a miracle, trust me!

Well, I looked so good that the doctor poo-poo'ed it and pointed out how much stress we were under lately...true.  I didn't think that explained the "new pain" but...hey, the man's been right on an occasion or two (ha!).

That day I also decided that the two almost year-old prescriptions for glasses I'd been carrying around could be filled at the one-hour place at the mall.  Yes siree, get me out of my bed and the sky's the limit.  Often my daughter will say, "so, shall we now drive up to Babushka's?"... her grandmother who lives eight hours away. Cute kid!  Very funny kid.

I was in an absolutely wonderful mood.  I actually picked out two frames I loved, a first.  My son and I sat down where he gobbled down his dinner and then ate mine too.  Good time as we walked around.  

My luck!  I picked up the glasses and tried them on.  Both prescriptions were wrong...WAY wrong.  The man, who HAD thought that they were an odd prescription, tried to talk me into liking the new "vision."  I informed him that IF my son were playing at the Super Bowl and IF I wanted to see if his nose were running, only THEN would I need the new prescription.  I had thought the new eye doctor might have been a bit off when I saw her...OK, I actually wondered if she was nipping from a bottle, but never did I expect a bad prescription.  The reading glasses were off too.  The poor optometrist at the one-hour place was about to go home but he was roped into checking my eyes.  I really did not want to come back.  Who knew WHEN I'd put makeup on again, much less get out of bed for a day...carpe diem, as my disgustingly optimistic hubby would say.  Seize the day!

Two new pairs of glasses had to be grinded.  My son looked at me and said, "things never do go quite smoothly for you, mom, do they?" Oh, as I've said once before, out of the mouth of babes!  An hour later, I was on my way home, happy that I'd picked out new glass frames to go with eyes which had on makeup.  The last time had been without eye makeup and it was a most unfortunate move.

But the next day, I had a really bad pain that nothing would help.  I finally woke up that eternally optimistic hubby of mine who took one look at me and said, "OK...off to the ER!"  There we had many tests and it turned out that this new pain was gall bladder stones!  Appointments for further testing were made.

So, the moral of my story?  Well, there are several morals but I'll only point out a few.

Ladies, do NOT throw your doctor off by putting on war paint when going for an appointment. It really threw my GP off his game.  Wow!  Was HE ever shocked! 

Secondly?  DO wear your eye makeup when picking out new eyeglass frames.  I hated every minute of the four years I wore the pair where I wore no makeup picking out the frames.  Sad.

Thirdly, if you think there's something wrong about a doctor...look into it, for heaven's sake.  That woman was nuts!  NOT to mention blind.

Fourthly: skincare is here to stay, girls!  Forget the big guns and paint.  Yes, the no-makeup look takes a lot of work but don't let anyone fool you...it's a lot easier to achieve if your skin is good to begin with.  I know, it's very time-consuming, but what can I say?  Sometimes it's a real pain being a woman.

Finally, if you go to the ER, you may want to consider washing your face off with bleach and detergent...you WANT to look bad and not radiant from the latest wonderful blush you bought.  Church: wear it all.  Hospital?  If you want to be taken seriously, don't even THINK about hydrating your face!