Progress Report Surprises

Well, today turned out to be a bit of a surprise.  Just as I think I know more or less the things that are "majorly" wrong with my body, the son-of-a gun (my body, that is) throws a curveball at me.  Oh CFIDS/ME/CFS and fibro, you evil, evil rascals  entities.  You betrayers of myself.

I saw my surgeon this morning - you who read my blog regularly MUST remember Dr. Hunk!  Oh, he's just a wonderful gentleman, from a different generation when people had beautiful manners but were ever so strong in a silent dignified way.  But I'm not going to extol his virtues today - I'll have to leave that for another time.  Sigh!

Instead I received more clues as to what's going on with me and I think that in the process I may have shocked the poor man a bit.  Three weeks ago, we didn't have much time, in the scheme of things, to talk about much but the upcoming and then resulting emergency surgery.  Today I found out that he was quite impressed with the fact that I had to have been "in a whole lot of pain" from the chronically-infected gallbladder and one of the stones which was a "whopping" 0.8 cm.  

He'd thought that I was nauseated and constantly throwing up before the surgery (I told him our family's weird that way: we don't do nausea nor barfing) and he said that I would be feeling sooo much better very soon because of the surgery, once the healing sets in "big time."  He gave me another blow by blow of how long it takes your body to recover, how much recovery is done by x amount of weeks, months, etc.

I told him that I was "unusual" in that after surgeries, I've always felt my best, the theory being that my immune system had something to fight, other than my own body.  In other words, my immune system was way too busy fixing me up and boy oh boy, it was nice to get a break, relatively speaking, from too much pain.  Oh, I had pain, but not like I normally have it and I've hardly had to take any pain medication at all as my body heals.  Very weird.  Shows how you DO NOT GET ADDICTED TO OPIATES IF YOU ARE UNDER THE CARE OF A DOCTOR WHO KNOWS WHAT HE IS DOING AND IF YOU'RE ONLY TAKING THOSE OPIATES WHEN YOU ABSOLUTELY NEED THEM!  

But as the appointment went on, I think he started to realize, finally, that the infected gallbladder was the least of my problems.  I told him I had no idea that the gallbladder had been an "outstanding" problem and only felt nausea when seeing too much fruit and didn't have enough meat protein.  Furthermore, the fact that I'd had pneumonia since July and hadn't known it had definitely shocked me - as it ended up shocking him that I'd not realized it too.  He then discovered that I never really had much pain in the gallbladder area but three times, mostly because I'm always going through bigger pains in other areas.  When he saw all the medications I was on, he started getting a better idea of the stress my body is under always, as in chronically, relentlessly, and without end.  Unfortunately. (Though fortunately, in that he understood what was going on, or getting a small picture of it, having an open mind, not rigid in thinking like too many other doctors can be.)

He also got a kick, in a perverse way, from finding out that the pain from the surgery woke me up, not a nurse, and that instead of expecting pain medication to help me with the post-surgical pain, I wanted to walk around - in the recovery room!  When I asked the nurse for permission, she was quite taken aback and couldn't believe I wanted to walk.  I simply thought they wouldn't give me any medication for the pain - having been through the machinations of the "major medical center" and its attitude towards pain with my daughter and the barbaric and lackadaisical attitudes towards pain relief.  He looked a bit put out by the perhaps "inflated" reputation of the "major medical center."  Actually, I saw quite a bit of that at the hospital during my stay and was quite happy to see that the high rating of the "major medical center" may not be as kosher as some would have us believe.

Oh my, YES!  They saved my daughter's life and on more than a couple of occasions. I'll forever be beyond grateful to them for that, beyond any words I could ever express.  Her surgeon was BEYOND superb and I can't praise HIM highly enough, but that is where it ends because they also caused her so much unnecessary pain - off-the-chart pain which added to the stress on her already weakened body.  They are great for a few things which very few places in the world can do, but in my humble opinion, they are really below par for the non-sexy issues which don't help them with their fundraising.  I seem to be under the mistaken impression that they should be superb and better in ALL their departments, but then I guess I'm just too picky!

I also want to add that "major medical centers" in general are definitely overrated.  I saw a commercial on TV recently and it said something about our community hospital being 12th in the country - yes, nation-wide!!! - for coronary efficiency, skill and care in ER centers.  Impressive, but I've always known that our town has superb medical care.  On the other hand, it's great to hear that we're being recognized! 

So, back to Dr. Hunk  my surgeon: I think he now has a new respect for those of "us" with CFIDS/ME/CFS and fibro!  Today he saw a woman in front of him who had been through h*ll and was still able to handle it as if it was a minor irritation.  This is the sort of thing that I want to convey to the world.  

But the body betrayal!  My body never ceases to amaze me, truly.  It turns out we have yet another surprise.  My body, according to the pathology report, is still in renal failure, not having recovered from the near-death experience of last year - a year ago this month - when I had two surgeries for compartment syndrome and all my organs started shutting down and worse.  Evidently it's not enough renal failure for dialysis, but still enough for it to be a serious problem and consideration.  Me: what else is new?  I'm losing body parts right and left, why should this be different?  But I suppose that when I see my GP, I'll need to have a talk with him about this new "discovery," along with all the other surprises we've discovered since I last saw him about six weeks ago.

And that's my progress report.  It feels rather self-indulgent going into all this detail.  On the other hand, my head is spinning with all of this news.  I need to figure out what everything means.  I STILL forget to take my thyroid medication until I start experiencing various symptoms returning.  My body is always surprising me: one day it can be my peripheral neuropathy that reminds me that I forgot to take my medication that morning, the next day it may be when my voice starts to go very hoarse and I sound as if I'm croaking.  Perhaps I should start a New Year's Resolution list now and put taking my thyroid medication on time each morning as number one on the list.   On the other hand, what about all the other number ones that need to be on the list?  

Man oh man.  How many more surprises can my body bear, I have to wonder?

I did, however, do my civic duty and voted: that was absolutely fun since I ended up talking for a little while to my old/former neighbor's sister, who's 91 years old.  In the midst of our conversation, I mentioned how often I remember her mom and the conversations we would have across our mutual fence.  The daughter was obviously touched and said "Mother" would have loved to know that I remembered her so often, and most especially our mutual love for gardening.  How I still miss those neighbors!  And how I love our little-town feel, especially on election day when you run into neighbors you -Ok, *I* - don't see very often any longer, due to the DD.

And to top it all off, hubby and I did indeed get to TJ Maxx and managed to fill up two and a half carts of things needed for the house as we will try to get the house into shape for the holiday season - IF we can get it looking like we're not in the middle of the remodeling and redecorating phase which, actually, we definitely ARE in.  (I KNEW we should have simply moved!)

So, all in all, it was a very up and down day.  I know that the next week is going to be payback for all the socializing and feeling "human" that I did today, but it will have been worth it.  Every once in a while you have to turn off that computer in your head that factors in every step you take and gauges it as to how much of a price will be paid.   Of course, with my recent luck, I just hope that I don't end up paying for that sort of thinking by losing yet another body part - I'm really attached to the remaining ones I still have, knock on wood!  (JOKE, I hope!?)

As always, I hope everyone is feeling their very best, only better. Ciao and paka!

Friday Tidbits: But This Is My Life Every Single Day!

Hi all!  In case anyone is counting, it's now been a week since my very unexpected surgery.  Here I am, writing in real time, having snuck up to my computer while no one's watching.  I thought I'd catch everyone up on what's been going on with, yes, the tidbits of my life, so to speak!  

As always happens to those of us with CFIDS/ME/CFS and/or fibro, nothing goes smoothly and things always end up being pretty hysterical - "hysterical" as in funny.  When I made the "heroic" decision to not have my gall stones removed a couple of years ago, I thought that I couldn't make that commitment because we never knew when the other shoe would drop and my daughter would need me to be with her at the "major medical center."  I felt I wasn't able to allow myself six weeks downtime.  Well, it's now Friday, so I thought I'd give you my thoughts in bullet points - just to keep that "Friday Tidbits" going: I do like a little bit of predictability in my life.

• Well, Surprise!  WHAT???  Going back to my "downtime."  I've learned, in the last few days, that my downtime will be more like six months!   The craziness is that I didn't realize that getting your gall bladder out was NOT like getting your tonsils out, even taken out as an adult.  Because of various complications with my tonsillectomy, I was in the hospital for five days, the usual being that you're sent home soon after those suckers are cut out.  It wasn't even as easy as my emergency hysterectomy or emergency appendectomy. Nope.  (See a pattern here?  I don't tend to get parts removed until need be!)
• As it turns out, the gall bladder is an organ vitally needed and the body has to make large adjustments. Throw in all the extenuating factors, that my body hasn't recovered from, the compartment syndrome surgery almost a year ago, that I am a super-sick mama with CFIDS/ME/CFS and fibro, that I'd undergone a trip halfway around the world just a few months ago and then had undiagnosed pneumonia on top of it all, that I'd developed hypothyroidism within the last couple of months, with a gall bladder that looked bad (inflamed) and stones that had nastiness around each of them: well, you're talking about the perfect storm.

Here's the beauty of it all, however.  But let me backtrack for a moment. (You didn't really think I could go a whole week without backtracking somewhere along the way, did you?)

• My surgeon was absolutely fantastic as were all the staff.  He actually sat down on my bed (huh? hadn't he heard that doctors don't go into the patient's space any longer?) and then invaded my personal space again, getting INTO my face, making contact with both eyes to make sure I was listening to him.  Dear God!  Did I focus at all about what the man said?  Of course not: I may be old but I'm not yet blind!  All I could focus on was how much of a hunk he was, still, after 20 years of my not having seen him anywhere around town.  As he talked more and more about the surgery, I couldn't help wonder, did he regret going into medicine and giving up football?  (We know way too much about everyone in this town!)  Those eyes.  The white hair: why do men get to be better looking with age?  Too bad I don't have a bunch of local friends any longer so we could dish!   Darn!  How was I to take things in with such a good-looking hunk doctor?   Like I said, I'm only human, not dead!  And much to the dismay of many, I AM truthful!  You're just getting the facts, oh dear reader!  (Oh no!  What did I say when I was under???)
• It wasn't a short little pep talk either, not once of the three times he gave me "serious talks"!  No, he gave me statistics as to how much healing would be accomplished at the end of a day, at the end of a week, at the end of three weeks and right on up the scale to six months.  Hearing those stats was pretty shocking.  Ah, but did they stay with me?  Of course not!  There are all sorts of statistics as to how much a patient retains from a doctor's visit: it's only about 10%.  Well, someone should do a study on how much is retained when the doctor's a hunk - and then when you're zonked out on pain and/or pain meds.  Good thing that the doctor knew to give out a lot of handouts, and not those wimpy sorts given out by hospitals, but tailor-made for his patients and the type of surgery with or without complications.  I suspect I got the "more complications" sheet.  Plus I now know that he's a REAL doctor because the added instructions were in awful doctor handwriting.  (Hey! The man had to have SOME sort of "defect"!)

(Oh good Lord: I just got a look at the description of the laparoscopic removal - excuse me as I need to run to bathroom and barf!)

• The hospital experience was actually quite fun.  I saw a few friends I'd not seen in ages.  People come and go more or less as much as they want and that is one of the reasons I love going local.  I was there so little (in and out) that my priest didn't even get a chance to find out I was there.  I heard one team doctor yelling that he didn't give an [expletives] what the [expletives] insurance companies wanted or didn't want but I wasn't going home until he [expletives] was good and ready to send me home.   Sigh.  I hear this sort of thing every time I get admitted: you can absolutely see just why the insurance companies do NOT want to recognize CFIDS.
• As is usual, when the 3AM hour rolled around and things got quiet on the floor, the staff's guards are down and they talk to you about the real picture of what's going on.  But a funny thing happened: someone had seen me doing my DIY facials on day #1 and wished she could wear moisturizers without breaking out.  After this "youngin'" left, I thought about it for a moment, then ran (OK, so I "hobbled") to my makeup area and took out three moisturizers (of several I just happened to have with me!) and called the young lady, asking her if she could come by, "when you have a chance, nothing important."  When she came in I asked her if she'd like a tiny demo of what a light moisturizer felt like, what a medium one felt like and what a heavy one felt like, explaining that the light one would be best for summer.  Someone found out about this and before I knew it, I was giving out advice on mascaras - I only remember because I didn't have my tube of Blinc mascara, which I've tried a couple of times and been very fascinated with: it coats your lashes like a tube and doesn't come off until you take it off the way you're supposed to.  I happened to have a few blushes (how???? I have NO idea!) and gave a few pointers there as well to someone else, all between bouts of pain.
• When I did come down with a bit of a melt-down, it was a nice - though extremely embarrassing - moment.  My body had reacted to the thyroid medicine the day before with a tiny rash that I thought was due to stress and I never thought to mention it to anyone, it was just so "ordinary."  The next day, after surgery, I was given the thyroid med again and I got a bigger rash, developed invisible itching areas and parts of my body started displaying hives - I was totally miserable and was trying to avoid a steroid shot like crazy.  Now this was the final blow.  No one could figure out what was happening until I looked up hypothyroidism and skin rashes on my trusted iPad and found that a rare reaction much like what I was experiencing is known to occur if the brands are switched around; to make it easier to understand, it's basically a filler/formulation problem.  Well, given that I was in pain, that I'd not slept for how many hours (minus the operating time, when I woke up in recovery and asked if I could walk around) not having eaten in 60 hours and nothing to drink in 48 hours, all my defenses were down and I just lost it, saying "but this is my life every single day!"  They thought that everything that was happening was "unusual" and that I was just "high-maintenance" for the moment.  No, my entire life is high-maintenance.
• The poor nurse. She moved her things into my room and did her work there and would break off to talk to me when she thought I needed a kind word or just to talk, or if she was needed elsewhere.  I felt like a wimp but frankly, didn't care any longer.  She, on the other hand, couldn't believe that anyone could go so long with no sleep and kept mentioning that to everyone as if THAT was the biggie at play.  I tried to impress upon her that what she was seeing was just a tiny bit of my no-sleep problem.  As with everything with these illnesses you can't believe it unless you see it for yourself.
• And finally, here's the "beauty" of all that happened, the part I digressed from in the beginning: I want to mention the great support of the CFIDS/ME/CFS and fibro community.  Thank you to one young lady for tweeting all her followers to pray for me regarding surgery.  It was sooo sweet to see that on twitter.  (I hope I didn't imagine it!)  Thank you to so many who prayed on your own for my successful surgery.  And thank you to a special reader for the info you sent me regarding tips on how to take care of myself after coming home.  Had it not been for your words of advice, I would never have realized how careful I had to be, thinking - before you'd written your comments - that I was having nothing more serious than any previous surgeries.

The pain is mostly gone.  In fact, true to form, I'm actually feeling far less pain now than I feel on a "normal day."  I am convinced that this happens because my immune system has something to fight against (the healing that needs to be done) and consequently the other parts of my body get a rest.  My biggest problem now is huge weakness, worse than I've ever had, which is saying a lot.  My mind can't get around the weakness because its bedfellow, pain, is missing.  I do still have trouble talking, thinking, walking, feeling overwhelmed.  Not to jinx myself, but on the whole, this has been a reprieve from my normal life.

As usual, I hope that everyone out there is doing their very best, only better.  Happy Weekend to all!   Ciao and paka!

Surprise: "It's Not Nice To Fool Mother Nature!"

Mother Nature needed a job back in the 60's, so she endorsed Chiffon Margarine.

And what was it that I was asking last Thursday with my post, "Autumn Venting"?  With my newly-diagnosed hypothyroidism, I was wondering just how many more spare body parts I had available in my "innards" for either "ceasing" function - as in my non-production of adult human growth hormone - or "malfunctioning," as in my thyroid. And that's just the tip of the malignant doings of the "evil prankster" commonly referred to as CFIDS/ME/CFS and fibromyalgia.

Well, I suppose that I should be thankful to Mother Nature. She seems to be the only "being" capable of any influence over me - as in forcing me to lie down and stay down when need be, keeping me away from my blog when it gets to be just too much for my health, or sending me to see a doctor when I just don't get the message by any other means.

But today she - Mother Nature, that is - and Clarence, my guardian angel, combined forces.  (Incidentally, I actually named my guardian angel "Clarence" back in the beginning of this blog, feeling he deserved a proper name of his own after everything I've put him through over the years.)   But I suppose I've proven to be a bit much for Clarence alone lately - "lately" as in "relatively speaking" - and he needed some additional, but very effective, help. After all, I can't walk?    Well, then that means I'll simply crawl!   Therefore, I suppose - and mind you, this is ONLY a working theory since I can't actually read Mother Nature's thoughts, not even Clarence's - but I surmise that Mother Nature was called in to help this hopeless cause, moi!

Furthermore, there ARE, evidently, more "spare" body parts that CAN go, as I learned early this morning.

Last night I fell asleep in huge pain, at a huge unusual 10.   I've used the number 10 only a handful of times in my 38-year history, reserving it because I know things can ALWAYS get worse - but for once hubby misread me and thought it the "usual."  I woke up a few hours later, however, not able to move around much, with even more extreme pain.  After an hour and a half of weakness, pain, a bunch of other cruddy feelings/symptoms which I've thankfully repressed, and unable to move whatsoever, I finally woke up hubby to tell him that I needed to be taken to the ER STAT, and that driving me there would not do, even if it WAS only a 10-minute ride.  It hurt so much just to breathe and standing without falling almost such an impossibility that I've been crawling in order to do almost everything I do - and yes, crawling is every bit degrading as it sounds.

I've also been experiencing frequent falls lately, but unlike any I've had before.  Yes, spots and stars in front of my eyes, vision problems galore, blacking out and then gracefully passing out, somewhat like when Marie Osmond so gracefully collapsed on "Dancing with the Stars."  Yes siree, Bob, all that and more.  Now it's also my veins feeling as if they will implode and explode, both at the same time.  I can hear my heart throbbing in my head and feeling like IT will explode, as well as a whole new set of new migraines going on which no meds are helping.  My legs give out, I fall out of bed, I can't breathe when I get out of bed, I start shaking, spastically...oh, the list goes on and on.

As it turns out the gall stones which were discovered about two years ago (see March 1 post) are in terrible shape with fluid around them, the bladder is inflamed and since it is almost non-functioning, it too will have to come out.

But the surprise of the day was that I have pneumonia on top of it all!  Evidently, the surgeons don't like to operate when there's any infection going on but feel that the situation is such that I need surgery ASAP.  All the OR's and their spots are completely filled up but everyone's keeping fingers crossed, hoping that somehow a vacant spot will become available at some point tomorrow.

Well, "SURPRISE! Surprise! Surprise!" as Gomer Pyle used to so famously say.   I suppose that all that coughing which has sounded so much like a seal, described back in July, and still showing up, wasn't croup after all, but the pneumonia.  Now it's no wonder why I was so weak getting out of bed, having so much trouble moving myself from one side to the other side in my bed, too often all too weak to even pick up a glass of water and other such nonsense.   On the other hand, who knows where the hypothyroidism, my recovery from the trip to Malaysia, gall bladder and gallstones, insomnia, fibromyalgia, migraines, nausea, sweats, swollen lumph nodes, pneumonia, the DD, and any other mysterious symptoms going on still not identified but being explored begin and end?   It's all tangled up together like spaghetti.

So, get pneumonia, add a funky gall bladder and really messed-up gall stones, then add CFIDS/ME/CFS and fibromyalgia to the mix and you come up with pretty much a nice disaster or even THE PERFECT STORM - I don't mean to shout, but my techno-skills fail again as I want to emphasize, but don't know how to "soften" it by italicizing on my iPad.

I must say that thus far, I'm so happy to be in one of our local hospitals. (UNDERSTATEMENT!!!)  With yet another new building, the ER was a pleasure with beautiful, spacious private rooms - no curtain jobs for so-called privacy where everyone within earshot can hear your entire medical history. The entire area was blissfully quiet, so important for those of us with sensitivity to sound.  All the patient rooms on the floors are now private, thanks to the HIPAA privacy rules, and almost lush.  The staff has been on time with my pain meds thus far (knock on wood! and tphoo! tphoo! tphoo!), very kind and understanding.

Now, I wouldn't mind something to eat since I last ate Wednesday evening and won't be able to eat until some time after surgery on Friday, but it IS a rather small price to pay in order to get this part of myself figured out and to be done with.

So, hopefully, tomorrow I'll be under the knife and soon this little medical matter will be out of the way so we can get on with my other problems!  Thanks, Mother Nature and Clarence for getting me to the ER for this much needed operation, one which I kept managing to put off for a more convenient time!  I just hope I've not jinxed myself!   No pictures today, alas, but I'll try to slip one in once I get home and can get around a bit.

Finally, I hope everyone out there is feeling their very best, only better!  Ciao and paka, from my hospital room and my iPad!

A Shot In the Dark?

Soon!

It's almost autumn, which is, theoretically speaking, my favorite time of year.  I love the fact that soon we can once again go back to wearing sweaters - better yet, blazers and boots. (OK, so technically, not so much for me, but what's a technicality among friends, eh?)

Suddenly, I no longer spend too much time wishing my skin were removable like the lining of an all-seasons raincoat, although perhaps I should reword that statement as I would love nothing better than to be given a new healthy body - and a brain too, if that's not asking for too much.  If you have CFIDS/ME and/or fibromyalgia and even migraines, you most probably know what I mean.  (If) you're able to get out, it means that the days have changed!   Fall means not only beautiful foliage and crisp clean air, but that it's also possible to breathe again without feeling as if you'd walked into the kitchen of a diner before air conditioners became affordable, much less invented.

But to me, fall also means a dangerous time of year.  The temperatures are so drastic that one day it goes from 90 degrees to the next day temperatures in the 60's or below to the 40's and '30's, depending on where you live, or what the climate decides to do that year.  You finally get to the cooler temperatures and then "Indian Summers" begin and they don't last a week or so, but all too often seesaw back and forth, worse than any hyperactive child on a school playground.

Suddenly viruses and germs start popping up from all over.  Children going back to school means that those germs and viruses find a perfect breeding ground for those "goodies" to start spreading their wings - if those little nasties had wings, that is!

The part which *I* happen to "love" best is that anyone who comes into MY house and comes anywhere near me becomes a "Typhoid Mary."  That is, most often they bring home the viruses and germs and yet don't normally get sick themselves.

It's all to do with a huge subgroup - for argument's sake, I will call it "a subgroup," because, really, no one knows what the heck really is going on with this "umbrella" of illnesses we at the moment call "Chronic Fatigue and Immune Dysfunction" or "Myalgic Encephalomyelitis." (I love the later term, "ME," but not spelling out those words!)  It all has to do with our wacko immune systems, which don't even need to belong to those with CFIDS/ME or fibromyalgia but just about anyone with a screwy immune system or enough stress.  In my "subgroup" at least, I have a under-active immune system and an over-active immune system, both at the same time, affecting different systems.  For example, it's under-active while fighting infections but over-active in responding to the initial viral infection. 

This year we started this "Autumn Syndrome" early and this year we all came down with some sort of bug that's now going around town, starting with Labor Day weekend.  My feeling is "really???  Already?"  Yes, we all pretty much had a cruddy Labor Day weekend with a following week to match it, despite my optimism.  (When will I ever learn?)  I felt badly for my family but I was also feeling pretty sorry for myself too, I admit it.  I'm not a robot: I do have days when I get really cranky and it's just that much harder to laugh.  I also have to admit that all too often the only time I'm sure if there's something "normal" wrong with me and not something that's due to my core illness of CFIDS/ME/fibro is by seeing if my family is affected or the town is affected.  Other times I feel as I'm the canary in the coalmine which warns of what will be seen in the upcoming fall/winter season.

No, I do not get the flu shot each year, although I have a couple of times in the past.   Just as with every aspect of CFIDS/ME, even the advice on flu shots has gone back and forth as to "yes, DO get the flu vaccine, ARE YOU INSANE?" or "NO, do NOT get the flu shot! ARE YOU INSANE?"   I gave it up after my second flu shot which gave me the flu yet again, and pretty bad bouts of it at that.  After I got over the flu - in both cases - I was much worse than before I'd had the vaccines.  I'm glad that finally, most places no longer twist your arm about getting one because that's what mine had been: twisting of the arm, despite hubby, a relatively healthy person (knock on wood!) refusing the flu shot each and every year.

And though I DO have a problem with some vaccines (do we really need as many vaccines as are being hauled out these days?), I do believe one vaccine which has served me well is the "pneumonia vaccine."  I'd come down with severe bronchitis one year which turned into pneumonia, went straight into pneumonia the second time around, coming close to death because we had a hard time finding an antibiotic that worked on me and the third time it was an incredibly close call.  Period.  That's when we all decided that a vaccine would be worthwhile (understatement?).  In this case, however, we knew what we were vaccinating for, and knew that I would definitely not survive a fourth bout of pneumonia.

All of which is to say that please watch yourselves this season, especially if you're relatively new to this horrific ordeal. I'm not sure that all the doctors out there agree in regards to the flu vaccinations - a nice way of saying too many don't want to admit that they've gone back and forth on every theory they've sprung on us better than any Olympian winning gymnastics team.   

In the meanwhile, hoping that all are feeling the best they can be, only better.  Ciao and paka.

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.