Month in Review...

St. Louis' Record Blizzard of 1982, snowed in for a week!

I hate to sound like the old fogie that I am, but really, where has January gone?  It's been an eventful month. In fact, so eventful that I've barely blogged. (Eye roll!)

I came down with bronchitis this past week.  Now I'm on antibiotics and strict bed rest. I'm a bit grumpy because I had so hoped to start in on trying to declutter the house.  Darn it!  

However, I'm thrilled I got that pneumonia vaccine last year.  (And no, I don't get the flu shot, in case anyone wonders.)  I've had three occasions when my bronchitis turned into near-fatal cases of pneumonia, hence the vaccine many years ago.  My last bout of kinda-weak pneumonia last year reminded me that it was time for another pneumonia vaccine. Thus far, fingers crossed that the bronchitis doesn't go any further. 

My rheumy had warned me that I probably wasn't ready to get that colonoscopy I talked about in a previous post about "Cookbook Medicine."  Yes, the prep was easy (for me! we're all different!) but the aftermath was awful.  I already had the shakes and shivers to an alarming degree and they've gotten worse.  Now I'm adding the word "vibrating."  My whole body feels as if it's vibrating and that the house is shaking.  I have huge sweats, run fever then shiver: often it feels like what I imagine malaria feels like.  My mouth gets full of bumps and ulcers.  When I mentioned this to my rheumy and said I hadn't heard of anything about the after-effects, he started laughing and said, "Irene, they don't see the after-effects. I do!"  Yes, he was right. I probably did go in for that colonoscopy when I was still too weak from all those hospitalizations and ER runs in the fall, but I'm glad we can cross a problem with my colon off my list of red herrings.

Continuing along: as always in January, our movie-obsessed family has been following the award shows and we look forward to the Oscars, which won't be telecast until March this year.  Hey!  One of the only ways I get through the holiday season is because I know that the Oscars will soon follow.  You know: it's the dangling carrot.

I've seen one movie which really and truly moved me.  I'd never heard of it before, but after watching it, I couldn't stop thinking about it.  It's Dallas Buyer's Club and I think that anyone who has a chronic illness, which no one understands, will find the movie especially fascinating and on many levels.  Had I not seen it, I'd have thought all the accolades and awards which Matthew McConaughey has received thus far were because he'd lost so much weight to play the role.  I'd have been wrong.  He was incredible in the part.  Jared Leto hands in a marvelous and multi-layered performance.  The script, story and writing is amazing.  Need I say more?  Don't make me: I want you to be pleasantly surprised.  

Notably for me: I became a grandmother, finally!  (Excuse me as I do the happy dance - in my head, silly!)  To say we're delighted is an understatement.  After a very rocky few months, Baby Aiden was born.  Once he arrived home yesterday, and after a good quick nap by babe, mum and dad, hubs and I got to talk to Baby Aiden via Skype.  He's a nice, quiet baby - as long as he's not hungry and is not cold. But a funny thing happened. Whenever he's uncovered he starts to cry.  But once I started talking to him, he would quiet down. I hadn't noticed it, but my son had.  And - jumping for joy - my son was right.  Each time I stopped talking to the baby he'd start crying again.  My, my!  Aren't I the won-over Babushka! 

I did read a book this month that I really enjoyed and wanted to pass along the title. It's Fanny Flagg's The All-Girl Filling Station's Last Reunion: A Novel.  I think it's her best book since Fried Green Tomatoes.  The best part may perhaps be that it's a very easy read for those of us who have a hard time concentrating - or remembering - because of brain-fog.  The story is involved but in a slow, sweet ice tea way on a hot summer day. You know how the outside of the glass gets iced and as your hand melts the frosty outside, the water streams down, zig-zaggy?  There's heartbreak but there are laughs, just like life. I'm not going to tell you what it's about.  Just check it out.  I don't think many will regret reading it.  

And I guess that's a wrap for January.

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



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"Cookbook Medicine": Really?

I'm afraid I've fallen into that phase where I have so much to tell that, because I have no idea where to start, I've become paralyzed.  What a silly way to be!  I'm sorry it's taken so long to write a post in order to let you know about the colonoscopy, but I came home pretty sick from the ordeal of the recovery room and quite upset by what went on there.  In fact, I wrote an immediate account but realized I needed a few days to settle down and get over the unprofessional conduct of the recovery room, the out-and-and lies, the fights. Someone had to take the higher ground and I was determined it would be me. (Deep breathes: I'm still stunned!)  So, this post is not so much about my colonoscopy but the lessons I learned - or which were reinforced as a result of my experience - in the recovery room with doctors who seemed more like robotic technicians than patient advocates.  More on this in a moment.

First, the news which you, my friends, are waiting for: I'm clean!  I don't know what the fuss is about when it comes to getting cleaned out for the procedure, nor the fuss about the procedure at all.  It's really a piece of cake.

I do have two recommendations, however, for anyone who needs a colonoscopy: 

• Watch Dr. Oz get his colonoscopy (part 1 and part 2) at the very least - though there are other segments as well where one can hear his explanations.  Definitely see the the first part of his experience, however.  And then realize Dr. Oz is a man not used to being sick.  He complains of bloating, etc?  Please.  Easy peasy!  Though make no mistake: I have to give the man kudos for having done this service for the rest of us who need to go through the procedure.
• Prior to the procedure, read Colonoscopy for Dummies, available on line for free. There, important information can be found, such as, "can I wear makeup to the procedure?"  (And the answer is "yes," for those who wonder!)

The few days before I went in, I was in pretty bad shape, ME/CFS and fibromyalgia-wise, continuing with sweats (drenched bedding and nightwear), shakes, shivers, pain, ulcers on my tongue, swollen lymph nodes and the like.  In fact, my rheumy worried if I should postpone the colonoscopy, fearing what the "trauma" would do to my system once I got out of the procedure.  I wouldn't listen to such "nonsense," so he made me swear that once I got home I'd be on strict bed rest for a week, at the very least.  Since I was beside myself being so ill, I had no problems promising to rest.  I really needed to eliminate at least this part of my body as a cause of any sort of new health problem.

Let me make it clear: I had a terrific experience when it came to my own private doctor. It was the hospital system that I had problems with, much of which I'm not even going to go into at any point.  Why?  Because it is like beating a dead horse.  Period.

However, other parts I WILL address, if not here and now, then in future posts.  Why?  Because they are really important and we all need to be aware of the fact that these are problems that are too dangerous to our health.

The "fun part" I wish to address today came in the recovery room.  I woke up in no pain until ten minutes had gone by and slowly my BP started rising as the overall body pain started back in.  My abdomen, I should add, was in no pain, however.   Pretty soon my BP was dangerously high and I wasn't going to end up being discharged within the expected thirty minutes but only once my BP reached a safer number.  Unfortunately, the BP kept rising and rising.

And then the lying and arguing began.  I'd told the intake people, as well as the recovery room staff, that my BP was an indication of where my pain level is.  For many reasons, I have no anxiety from being in a hospital nor with any operations nor procedures.  Best, I was quite comfortable and trusted my own attending physician.  

However, as soon as the pain issue came up in the recovery room, the bull started.  First I was told (as in "threatened"?) that were I to receive any pain medication whatsoever, it would prolong my recovery room stay, delaying my discharge from the hospital.  I looked at the clock and realized that I'd now been there for at least fifteen minutes and that meant fifteen minutes to go.  I thought I could hold out as far as the pain went.

However, the pain and my body didn't agree.  The blood pressure and pulse rate were rising steadily.  When I pointed this out to my nurse, she, in a clearly disgusted voice, said that I was holding my arm the wrong way and shoved it.  The reading instantly came back even higher.

When I said that I needed some pain medication - the BP was now in the range that NO one would be sending me home any time soon - I was told the hospital no longer carried Demerol, a pain medication that had worked for me in the past.  I knew it to be a lie and told them so.  Important point.

To put things out in the open, I also pointed out that I was not a drug seeker, that they should read the chart (in the computers they'd spend a fortune on installing but no one seems to like - or read) and see what my BP has told them in the past, indeed why I was there in the first place (that the impaction had scared the beejeebees out of my attendings) and what medications I'd been on before.  By now,  nausea was striking hard. Thanks to the music playing over the loudspeaker and the light (glare) coming in through a window without curtains, I was now also getting a head migraine and the body migraine was quickly getting out of control.

Might I add, it seemed that the recovery room was designed with the staff in mind and most certainly not the patient?  Did I really need to hear pop music as I lay there, and then a DJ?  Worse, I couldn't even make out what the DJ was saying: it was all just much-unneeded noise.  But let's forget the patient.  

The same old bull, though on a higher level, began.  Another pain reliever was offered, a strong narcotic (fentanyl), which, unfortunately, had not worked on me in the past.   And so it went.  Another doctor was called in,  Dr. "Whiteman-not-foreign-physician" who - they must have thought, for what else could it be? - would have more influence than Dr. "Woman-and-worse!-foreign-trained-physician."  How bigoted can you get?  It reminded me of the incident in the ER when the charge nurse was afraid we'd object to a doctor with a ponytail and actually asked us if we objected to said ponytail.  

This doctor (Dr. "Whiteman") also said there was no Demerol in the hospital - they simply did not carry it any longer.  I told him I knew that to be a lie.  He, with a bit of shame on his face, admitted that the hospital DID have it but that he couldn't prescribe it.  I said, "No, you CAN prescribe it.  You simply choose not to.  You simply don't want to fight with the pharmacist in order for me to have it."  I also added, "since when have doctors allowed themselves to be dictated to by pharmacists?"  This is a HUGE bugaboo of mine.  I absolutely loathe that physicians have allowed the pharmacists to undermine the care of their patients.  In fact, I especially hate it because of the old joke, "What is a pharmacist? Someone who couldn't make it into medical school."  And it's been payback ever since! 

At this point, though I hated to, I asked for them to allow hubs to come back: I needed him to come in and fight my battle.  My BP was now in the stroke range and I was in way too much pain.

My husband and I were both appalled when we realized that the doctor had allowed a pharmacist whom we'd never met, nor knew his name, to dictate medical care from the shadows.  This pharmacist, indeed any hospital pharmacist in ANY hospital in the US, has no accountability for the care of patients.  That is the doctor's role.

My husband and I were dumbfounded, indeed our jaws dropped, when the doctor told us that he had to practice "cookbook medicine."  That was stunning.  The term "cookbook medicine" is a "somewhat" derogatory term, one I've actually used a few times in this blog.  I asked him, "have you no pride in your work?  What has happened to you that you feel no qualms about that term, indeed own up to it?"

I asked the doctor: 

• Since when have you allowed the insurance companies to dictate your medical treatment?
• Since when have you allowed the federal government to dictate the practice of medicine?
• Since when did you allow the corporation that owns the hospital to overrule your medical judgement?
• Since when did you allow the fear of having to justify your medical decisions prevent you from following your oath, afraid to explain to a board why you made such-and-such a decision?

How sad!  How defeated!  One can say, "is this the future of medicine"?  No, we were told in no uncertain terms that this IS medicine today.  Right out of the robot's mouth. 

I did get the Demerol I needed - in fact it had been ordered before the doctor used the term "cookbook medicine" in his defense, but "they" (the pharmacist?) took their sweet time about it - as my BP continued to soar, breaking records yet again.  Again I wondered, "What is my BP Trying to Tell Me?" as I looked at numbers I've never seen before.  But that last part about the BP is for a future post.

In the meantime, I hope everyone is feeling their very best, only better! Thanks to my very good friends out there who prayed for me and sent me such supportive emails, tweets, messages. I so appreciate y'all!  Ciao and paka!


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Friday Tidbits: What Is My BP Trying To Tell ME?

Sometimes moms are guilty as well when it comes to listening.  This was no happy camper! 

Yesterday I finally made it to my GI appointment and I'm on Cloud 9.  You may not think going to see a doctor is remarkable but consider this: since 2009 I've made many appointments which I've had to cancel at the last minute, all because I was too ill from my CFIDS/ME/CFS and fibromyalgia. This is the first time I've been able to see my GI in his actual office. (Baby steps!)

So, hallelujah!  It was almost a miracle that I got there.  I won't even mention the melt-down I had as I was getting ready.  Nor the shaking on the outside, shivering on the inside. That I fell a few times. That I dropped many things - because of the shakes.  Or that I ended up with cuts in various places because of the shaking, shivering and weakness. That I couldn't stop the sweat rolling off my head and other parts. That getting dressed was more of an ordeal than the usual: my arm has a rotator cuff injury so I can't do simple things like put on a bra. Hubs was having such a hard time getting me hooked in that I finally yelled (yes, I admit I yelled): "you must be the only male in the world who can't get a bra on a woman."  Hmmm.  Maybe that only applies to getting off a bra and not getting one closed.  I may have to rethink that remark! ;)

Continuing: I couldn't control putting on my eyeliner.  My vision, which is so iffy, was so bad that I had trouble connecting the eyeliner with the place it's supposed to go. (The vision problem is that the eyes aren't getting the right signals from my brain, the pitocin problem.) 

My skin has many problems such as rashes and hives but almost never zits?  Well, when I got home I found quite a few zits.  My rheumy tells me that it's because of the stress of getting ready for the outside world, just overdoing it, which produced those ugly suckers.  But you don't want to know all those gory details as I pushed and pushed myself to try to get out the door.  Right?  So I'll spare you. (That's me being tongue-in-cheek, folks! I just told you most of it, I know.)

So, getting back to the appointment.  It was good but it could have been better. Don't get me wrong, I really like my GI.  However, I don't think that 15-20 minutes (tops) is enough to discuss what I've got going on with me, my very complicated and long-term problems.  And it's further frustrating because this doctor, who's been in practice for over 30 years, repeated for the nth time that he'd never seen such a bad case of impaction, occupying my entire colon which we fought during that 10-day hospitalization in late October.  The impaction he could spend a few minutes on but not address some of my concerns and observations which I feel are needed in order to get to the root of the GI aspects of my health.  We're over the impaction and need to move on.  Yes, it's great to have validation that I was in a situation that DID need a pretty long hospitalization (hear that ER???) and to know that hubs and I were right to use all our wherewithal to get me admitted by the ER. (For that incredible incompetence/neglect/unprofessionalism, see links here and here and a whole lot of other places in this blog, of late.)

But yesterday was a bit of a wake-up call.  I've finally figured out one of the things that has me concerned.

For decades I've had extremely low, verging on dangerously low, blood pressure.  In fact - and I know this is a bit mean, forgive me - but each time a new nurse at my GP's office would take my BP, I wouldn't warn the nurse that I have low BP.  Each time the nurse would have to take the BP measurement again and again until hubs and I would burst into laughter telling the poor soul which numbers she should head towards.  Hey, we get our jollies where we can!  

Just as each member in my family has something about me that's a "tell" as to how bad I am on any particular day - hub's is the color of my lips: no color or blue - my "tell" to myself is my BP.  If my BP is high (and hubs is experienced in taking BPs) I know that I'm really sick and I try to stay in bed, emphasis on "try."

Before going on, yes, I do understand that the BP is only one part of a complete picture and that everyone has their own unique BP numbers.  However, before I became really sick, my normal BP was always 120/80, a very good BP level.  

I also have orthostatic intolerance, which adds to the danger of the low BP.  Typically, in bed my BP is 90/70. I sit up and it goes down to 80/60.  I stand up and it drops to 70/50-55.  My low BP is one of the contributing factors to my falls.  It's also a contributing factor to why I can't do things.  For example, it's been years since I've been able to take a shower, I have to bathe in a tub.  I can't stand anywhere, I have to be seated.  I can't eat at a table, I have to eat in bed.  You get the picture.

All too often, going to go see my GP is really strenuous.  (Understatement.)  I'm in too much pain, I'm miserable because I haven't slept in 24-72 hours.  I have a monster migraine or I'm simply too weak, I'm "fragile" (I hate that word!) and so on.  By the time I get to my GP's office, on those really bad days, my BP will "skyrocket" to the 120's.  For me that's validation: I'm not being lazy, I'm sick.  Yes, lazy.  It's one of the Achilles Heels I live with.  I fear being lazy. (Hence so many home accidents, falls, etc. And scarier is that I do have a moment of being unconscious.)

Furthermore, with my BP in the 120's, I know that I really have to try to stop doing the little projects that I give myself so I don't go stark raving mad from boredom and inactivity - or to distract myself enough to ignore the awful pain.  However, if I don't stay in bed here are just a few of the weird things that have happened to me.  Believe me, these are just a few of the examples: 

• I really wanted a cup of tea but hubs, on this particular day, had given me a warning not to get out of bed.  After a few hours, I couldn't stand it and went down to the kitchen.  As I opened the cabinet, a mini-Cuisinart fell down and its sharp blade cut my forehead.  (OMG: 10+ years later it now occurs to me how it could have been an eye that got hit. Gulp!)  You know head wounds: blood was all over the place.  Despite that, I was way too sick to go to the ER for stitches, even with an ambulance.  Had the house been burning down, honestly, I wouldn't have been able to get myself out of bed.  An aside: for months people would tell me (especially doctors) that I would have a nasty scar across that valuable piece of real estate.  This was before my body stopped making (adult) human growth hormone and I was always freakishly lucky not to scar.  That, along with a bit of lavender essential oil, left no scar whatsoever on my forehead.
• One Thanksgiving: I was feeling weak and shaky from having cooked and baked since the weekend and hubs was insisting I get to bed.  However, I didn't want the "Pillsbury" Thanksgiving/Christmas Eve/ Christmas Day/New Year's Eve and Easter dinners my poor husband tries to do. (He means well and it's not his fault that he lacks the cooking and baking gene, but....) We were down to our last couple of hours before the actual dinner, which we all know is the most frantic part of any festive/over-the-top meal.  "Just let me finish this!" "No, go to bed NOW!" was said quite a few times. Without thinking, I picked out the blade in the regular-size Cuisinart - and sliced the tip of my thumb extremely deeply.  When, after 10 minutes it wouldn't stop bleeding, despite elevating my arm above my head, I had to go to the ER.  Yet another Thanksgiving to remember!
• One more of the many incidents and I'll put you out of your misery. OK, two.  I got out of bed to go to the bathroom and in "coming to," was surprised to find myself on the floor.  On top of me was a wicker tray with stand and a wing chair.
• BEST: in the bathroom I passed out.  You know the principle: A body at rest stays at rest, a body in motion stays in motion.  As I passed out, my arm went into the toilet down to the bottom, my head ricocheted off the toilet paper holder (breaking the holder), continued to ricocheting by hitting my shoulder hard on the sharp edge of the bathtub, ending up bouncing my head off the hard corner of my vanity.  

So BP has become a huge motivator in getting into bed and "resting."  

Last year I declared war on my health.  Oh, I've been at war to get my health back for decades, but this wasn't just war I'd now declared.  I now wanted a nuclear war declared on whatever is making me so sick and the accelerated speed at which I'm deteriorating - and losing body parts!  There aren't too many spare parts left after all.

Instead, I had another whopper of a year in terms of how much time I spent in the hospital.  Luckily, I didn't break any records, mainly the one year when I'd spent more days in the hospital than I had at home.  But this year has been close to a record-breaker.  

Getting back to the GI appointment.  My BP registered at 150/90 (if I have the diastolic right).  Hubs and I have a game where we try to predict what my BP will be, based on how many melt-downs I had in getting ready, how often I had to sit in order to prevent passing out, how much I'm shaking and all that jazz.

Boy, were we wrong.  We'd thought it would be the high 20's.

And that's what is bothering me.  Lately my BP has been too high, even breaking records with numbers such as 192/104.  That's not good for anyone, but especially someone whose BP is often 70/55. 

I don't want to put a band aid on the high BP by taking medication that will lower it.  I want to get to the bottom of why it is that suddenly the 150's are coming in regularly and that I keep breaking my BP records, that I'm into new, disturbing numbers now on the other side of the pendulum. 

What the heck is/are the problem(s)?  We're still on the "Hunt For Red October," where I was over a year ago. And how can this problem be resolved when doctors don't spend enough time with you in order to try to figure out what the underlying problem(s) is/are, nor communicating with your other doctors (as they did back in the day!) to figure out what is going on?

At any rate, I'm scheduled for a colonoscopy in early January.  And I came away from the appointment with information on the colon which I didn't have before.  I'll describe those tidbits in a future post. 

In the meantime, I hope everyone's doing their very best - only better!  Happy Holidays!  Ciao and paka.

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)