"Who's on First?"

Many times watching Michelle navigate her trip through health care is like watching the famous Abbott and Costello comedy routine, "Who's on First?" Is it too much to ask to put communication at the forefront as we fool ourselves into thinking that there is such a thing as "coordination of care" without making a trip to the Mayo Clinic!  Unfortunately, that prospect is at best...abysmal, so keep the expectations realistic if  the problem is more complicated than hypertension or gastrointestinal reflux.

Case in point...Michelle's latest medical mystery is causing her body to make too much or failing to get rid of, her cerebral spinal fluid.  This is the crystal clear liquid stuff that roams up and down you spinal cord and bathes your brain needed for a proper functioning nervous system.  If the pressure is too high, the problem is called "pseudotumor ceribri" or better described as "idiopathic (meaning we haven't a clue) intracranial hypertension."  In lay terms and may you never have to come to these terms...it feels as if your head is ready to bust open at the seams. Throw in double and/or blurred vision and its most severe manifestation, a total loss of vision. The fluid is actually pressing and "squashing" the pituitary gland.  That is not good, since the pituitary gland is the "high school jock" of the endocrine glands.  It always sits at the "cool table" and has a way of messing up the body's hormone balance.

Usually to get some answers, one gets their ticket punched for a visit to the ER (oh...what joy!) for a lumbar puncture...or in the old days, as most know it, a spinal tap (now is a good time to toggle over to a YouTube video).  The procedure is quite impressive, unless your the one being used as a pin cushion, because in an emergency situation it has to be done "blind" without the guidance of a fluoroscope  (a fancy machine that helps guide the needle in). And please note...the ER doctor was fabulous at the procedure.

So...why don't more physicians talk to more physicians and get a few answers for their patients? After all they belong to the same "fraternity!" They have sacrificed and worked hard and certainly relate to the obligatory mandatory suffering along the way, right?  However, here is the rub and it is very abrasive...and extremely frustrating. Many times these doctors are extremely proprietary, meaning if I am a neurologist, it must ONLY be a neurology problem or if I am a gastorenterologist, the answers can ONLY be found in the intestinal wall. And...I am not so good in "sharing" what I have so deftly discovered.

In a perfect world, we would not care about these "turf wars" and if a pediatrician tags out to a thyroid specialist, make sure the chart notes tag along. I don't really care who forwards my daughter toward optimal treatment. I am not throwing stones here...okay, maybe a bit. The patient may suffer because of the battle of egos. Over the years and  in the span of sixty doctors, I have seen maybe a half dozen primary care and specialty providers think out of the box when it came to Michelle's medical management. Of late, it has made a tremendous difference in Michelle's quality of life and I am eternally thankful.

So...best wishes in your personal health challenges and trials.  How refreshing is it to see any specialist act special and make the investment by pulling out all the stops, and truly care.  I'm fine with an endocrinologist acting a little like a cardiologist, if necessary.  I wish you luck on finding out, "Who's on First!" And remember...take as directed.
Blake

Back to the future...again

To all those who may have stumbled on to this site by a feral keystroke and those three past   followers...WELCOME BACK!

Tis not like I didn't want to post over the past few years on the subject of health care excelling in putting the "fun" in dysfunctionality.  And..somebody certainly most wiser than me once said, "Write what you know." Oh...I know and have had every reason in continuing to join all those bloggers "popping off" about an issue screaming inside their head and leaving them in a state of wonderment on why all readers don't share their same passion. It is not hard to get passionate and sometimes just damn angry when you see a loved one chronically in pain and  co-suffering the accompanying hopelessness.

The personal exhaustion factor seemed so overwhelming and I continue to exist in a relentless state of "shock and awe" as our family continues to search for some answers surrounding my daughter's decade long battle with ungodly health (refer to previous posts for sense of her journey in an unbelievable health care maze).

So...the gloves are off from here on out. This will be a narrative of advocacy.  Change is good. Look, my intention isn't to strike a pose of a great iconoclast of the health care system.  Providers have a tendency to protect their commitment to medical care and get defensive when their reputations are questioned. But, for over a decade, I have watched my daughter suffer...and it angers me. It angers me more thinking about the many people who will never read my poor pathetic attempts at a blogging. They often lack the advocacy that I have felt oh so lucky and blessed to possess.  I would not want to be Michelle's doctor and believe me, there have been many who have gracefully...or not...bowed out of that responsibility over these years.  I mean not to offend, just provide a little positive tension when it comes to subject.  If we can't pause and offer a little self criticism, how can we get better?

We call Michelle the "tail of the bell curve" and if you look at the bottom of my site, you will see her in front of a picture of zebras. There is great symbolism in that moment, because at the risk of sounding cliche, when we hear the sounds of "hoofs" we think horses, not zebras. Zebras often confirm a critical diagnosis.  Remember? It is the "practice of medicine!"

From now on my dedicated readers, my post will focus on sharing events and experiences that can enlighten. Like many of you, Michelle's continual trial motivates us to find the top of the puzzle box so we finally solve the mystery.  We are going to start from right here and now...going in reverse and in no particular order (it blends well with my adult adhd).  I got the idea a couple of years ago when I purchased the first installment of Mark Twain's autobiography...and it was random and I liked it.  The bottom line is, please stay with me and share the trials and the frustration and the small victories that our family as had. We willingly share Michelle as your personal lighting rod.  I promise it will help and you will never feel that you are bearing your particular health care crisis alone.  The pharmacist is in and he is to be trusted. And remember...take as directed.
Blake

Drop the phone....step away from the counter!

Alexander Graham Bell would be furious if he could stand behind any pharmacy counter for 5 minutes and see how his invention has spawned an unbelievable level of thoughtlessness by many of today's customers and their omnipresent cell phones.  I know there were impeccable rules of etiquette in the 19th century, way before cell phones became common place. I would very much like to see that sense of decency fast forwarded to the 21st century...Please!!! And the insults only get worse.  Seriously, who does this! Or, maybe the bigger question that begs to be asked is, "Why must they do it?"
When a pharmacist is attempting to counsel a patient on a drug that could at least, quickly improve quality of life, or at best save one, to me that is a big deal...not to overplay a druggist self importance or the medicine dispensed.  On the contrary, if warnings on  a drug's adverse side effects are not heeded, because an individual walks up to the counter on their cell phone discussing important topics that can't wait...for example, "Do you want me to pick up the Bacon Ranch Dressing or just the Regular?"...we have a problem.  In short, you might trade your daily helping of greens for a very bad day of drug side effects.
Or...here is one even better.  As the patient walks up to the counter to pick up their prescription, the cell phone goes off, they frantically pick it up and...the PHARMACIST "gets put on hold!"  "Oh, Mr Pharmacist, I need to get this...be with you in a minute! Really? I think you see where I am going with this. 
So...at the risk of sounding a little edgy on this one (it was a very difficult week at the pharmacy for me), I am pleading with all pharmacy patrons.  Please...give your favorite pharmacist a break!!  Listen carefully to what he or she has to say about your latest drug therapy.  Don't put that all critical bit of information "on hold!"  Be a great health advocate for yourself.  It is so easy in this case and not to sound to melodramatic...it might just save a life or the quality therein.

I'm begging your...drop the phone...step away from the counter! And please remember...."take as directed."

Blake

I am back...Why?

I am shocked!! I just noticed the date of my last blog posting. It is clearly evident that it has been so long since I vented, that I have lost the last two people in the world that were even remotely interested in my health care insights. And...quite frankly, I think they were close family members, just peeking in once in a while to see if my rants were turned down to a rolling boil. Hey, I am not angry a druggist, I'm just at an age where I don't suffer fools lightly and I might be a tad grumpy about the state of affairs behind the pharmacy counter, but at the end of the day, I would very much like to see a smarter pharmacy patient. All parties would benefit and I am betting my next paycheck, it would lead to big savings on the health care dollar. With frustration running high of late, today's writing is personally therapeutic and I suppose a little self-serving Hey...I can live with that! Maybe, I can slowly woo those few readers back with a few tips. I have seen the quality of writing from outspoken pharmacists on tons of topics; some whimsical, some tragic, and some very thought provoking. Given the right chance, I just might be able to find my little niche in the world of pharmacists that can both count to thirty and also comment on the issue at hand withouht leaving a dangling participle. There is nothing wrong in wrappping up a "pet-peeve" in a small box of "edginess", is there? I want to get the readers attention, but I don't desire to be obnoxious about the whole affair. So.... True to my mantra of the 3 "Bs," I shall Be Brief, Be Brilliant, and Be Gone. I ask a simple question to all of us pharmacy partons who just might have been guilty of the following breaches of etiquette. I want to simply ask..."Why?" -Why do we wait until Friday evening to request a prescription refill with NO refills, knowing full well we are "leaving town for the weekend?" or better still, "in a couple of hours?" -Why do we think the pharmacy dictates the price our insurance company is charging us for our prescriptions? -Why do we think that a pharmacist will fill our prescription faster if we stand at the pick-up window, pounding out Morse Code with our debit card? -Why do we and the pharmacist count 30 days differently when it comes to Hydrocodone/APAP prescriptions that must last 1 month between refills? -Why do we think that our physician requires an insurance card at time of service, but is unnecessary at our local drug store? -Why do we think that pharmacists learned an extra skill set in pharmacy school as a grocery checker? -Why is that we feel okay about calling our pharmacist and requesting to refill "all the usual prescriptions I usually get every month?" -Why do we think that in the pharmacy, 20 minutes actually means 5 minutes in prescription processing time? -Why do we think that a pharmacist can easily fill our prescription 5 minutes before the closing hour, because we are sure he doesn't want to get home after spending 10 straight hours on his feet? -Why do we feel the necessity on arriving at the prescription drop-off window to immediately stick our head inwards and yell at the top of our voice, "Yoo-Who!" as if those 2 seconds of wait time on our part was extremely unreasonable? -Why do we think our local pharmacist is obligated to solve our mail-order pharmacy problems and many others that he or she might not be qualified to do so? (I do believe that is a dangling partiple situation!) Okay...I think I have made myself clear and not too insulting. Next time you fill that prescription, feel a little for that overworked guy in the white labcoat...and remember, Take as Directed! blake

How does the horror flick end?

Yesterday, was Halloween, and as I get older, I like the marking of All Hallows Eve less and less. In fact, 3 years ago I was given the scare of my life...literally.

If you are the 1 or 2 people following my "journey o' blog", you will remember that on 10/31/2008 our family was hit with our own personal tsunami(2008 wasn't the best year for a lot of us, you must agree). My youngest daughter was in the OR for a critical leg surgery. We were impatiently waiting outside for the results. Bone cancer was a possible outcome. Bone infection was the other option. As you would guess, neither was a trick nor a treat at the time!

We marked the occasion last night over pizza and soda and all things considered, we are all healing physically and emotionally. It will take some of us longer to get closure. However, one could make the case of not completely shutting that door, lest we forget the experience and lessons learned. Obviously, there was some second guessing on my part regarding all of those past healthcare decisions impacting my family. I suppose that was to be expected. All of the "woulda,shoulda,couldas" came gushing out.

But here is the thing. Here, indeed, is your prescription that hopefully keeps you from being too worried or whining too much or second guessing yourself, or thinking "I am just too exhausted to continue!" amidst my personal health care crisis. And by the way, I have been a active participant in all of the previously mentioned counter-productive behaviors.

This life saving "medicine" is the assurance that you will get through the crisis (despite screwing things up more times than you can count). Without any additional pharamaceutical help, your present situation will be soon a past situation. Embrace the change. Think of it as being trapped into watching a bad horror flick (painful as it is). You desperately want to see how this ghoulish story ends. However, as luck would have it, the DVD goes belly up, dashing any chances to catch the story's conclusion. It may be a while before you are able to purchase a new, fancy BlueRay/DVD player and re-rent the movie. The waiting game is on.

Like this goofy analogy, we have little control over outcomes, especially when we desire them the most. However, rest assured, they will find us, regardless of its nature. And that is a good thing, in its own twisted way. We now know! I dare say, life would be both monotonous and unfilling if things were any different. There is great value in historical perspective in this portion of life's journey. We get to make the judgement call on whether the tincture of time is powerful medicine for healing of our souls. And please remember...Take as directed
blake

Two ears, one mouth!

The "Talkover"...I hate it. It pushes my buttons in the worst possible way and creates a huge mass of human rage, from a fairly easy going, friendly pharmacist...occasionally like me!

So, what am I talking about? Remember? All of us have been victims. It is the person that thoughtlessly ambushes you half way in to a conversation where a cogent thought might be useful...say, counseling a patient on a new medicine. They talk "over" you with a question or a lecture or a whine or a complaint, or a whatever... before the first syllable is out of your mouth. It is like a listening disease! Its symptoms are closed ears and open mouth and usually with a foot in that same mouth, following close behind. Hello...two ears one mouth, ya'll!

Take today. If this patient at the pharmacy counter would have let me finish my thought (and I was fairly confident that I knew what I was talking about) before he popped off as if I was the stupidest guy in a white lab jacket, our verbal exchange wouldn't have escalated to ,"I don't like you Mr. Pharmacist!" and in response, "Quite frankly, Mr. Patient, I am not real fond of your present attitude either!" It didn't end well, but I deftly defused the situation... by what else? I walked away. Oh...that was mature!

So what does this have to do with being a better health care receiver and advocate? Isn't it obvious and yet almost impossible to accomplish? Improve those listening skills, rookie! Get in the game!

Oh, by the way, physicians are not immune to the "Talkover." Neither are pharmacists. In fact, in many ways we can become experts. This is not good. Just for giggles, be your own referee. On your next doctor's visit pay close attention to his or her "doctoring" listening skills. You make the call on the "Talkover" infraction. If you have to, throw the penaly flag! They should be trained listeners, although I have seen some disturbing exceptions on the health care field. Nevertheless, they are trying to dial in to what you are saying with both the verbal and non-verbal signals. Hold them to that standard. Many are very good!

And just for good measure, how about turning the tables on the well educated, highly trained doctors? First, don't do the "Talkover!" Stake your health claim quickly and sit back and listen to the MD's response. Stay on point and you will be enlightened. You will know your provider's level of investment, interest, expertise, etc. My daughter saw nearly 34 physicians before a trip to the Mayo Clinic nailed the diagnosis. THIRTY FOUR! She can immediately tell, within seconds into an appointment whether a doctor is genuinely engaged with her medical care or politely (or sometimes not so politely) dismiss her.

Remember, you are ultimately responsible for your health care and active listening is one of the first steps. It starts with your own body and mind. Trust yourself and act...move and listen...and then act again. Incidentally, follow up questions during these brief but critical moments with your doctor is not and I repeat not the "Talkover!" Just be wise with your timing.

Okay...I'm done, lest you criticize me for the "Talkover" and after today, I just might be very close. Beware of creepy Halloween pranks and of course... the "Talkover." Remember....Take, as directed!
blake

Option is not a Failure!

It will happen, especially if a serious or indeed life threatening illness plays a family member like Whack-A-Mole; with the MD holding the Whack! I know what I am talking about, because I saw it first hand on the face of an ER physcian who thought he was option-less in helping my daughter. They won't let us admit her," said he. "What do you mean we are out of options?" I asked, panic stricken.

As you would guess, it is a hopeless feeling, but maybe more disturbing is the newness of that emotion for families experiencing their initial big health care crisis. I was stunned at the response. I had never heard such a thing and certainly this couldn't be happening in the 21st century. Are you telling me that the on-call orthopedic surgeon at the local hospital was not going to admit my daughter because of his hubris, ingorance, a poor judgement? If your remember, the reason was that his colleague instructed him not to do it because he thought my daughter was a drug seeker! Well, on hindsight, he was precise but misguided in his clinical assessment. After all, her femur shattered because of mis-diagnosed bone infection,so I'm guessin' she was looking for some pain relief in a round about way. Sorry, I flew off on an emotional tangent there for a sec...oophs!

So what is my point? As an educated health care recipient (and I mean get educated! Don't be coming in to my pharmacy not knowing what your doctor was supposed to be calling in for that nasty sinus infection!) and a advocate for that sick loved one, NEVER and I mean NEVER believe that you are out of options to get the needed treatment. You think that any doctor would accept that kind of "Sorry, there is nothing I can do?" response from one of his own. Believe me...he would fire the doctor and find a new one. I have done it and it was nothing personal. It was a matter of reminding that health care provider that I pay the bills, or more correctly speaking, my insurance company ponies up and then I disagree on the treatment approach.

And, guess what? You will find plenty of doctors out there that share your sentiments. A fiesty former Army Doc, also on duty that night, gladly shattered protocol, called and end run, and in less than an hour, my daughter was in a hospital bed, Morphine on board, and all vitals good. She was brilliant enough to not accept that woefully outdated argument of "Well, that is the way we have always done it around here!"

It will be a challenge to literally think out of the box and encourage that health care team that surrounds you to do the same. You are in crisis mode, so emotions are high and logic is suffering, Fear not, because those health care providers, like you, are are product of life's experience full of great and not so great ideas. Push 'em a little and ask what they would do if this were their child or mother or wife? If necessary take them to the brink of surrender. It won't be hard, most of them are overworked, sleep deprived, and often pick their battles wisely. I think that the pharmacist and doctors got so weary of me popping off as a pharmacist, they started asking me my insights about pain management to help my daughter and ultimately themselves (figuratively speaking).

Today, after three years. my daughter is thriving under the care of a skilled accupuncturist. And....this conservative, western medicine, trained pharmacist (aka,me) could not be happier. You listen to your intution. It is sometimes as valuable as that skilled surgeon or that new chemotherapy medicine. Even in the most sobering situation where thoughts and actions are so intense, almost surreal, you still have the option of doing NOTHING and leaving the outome to a force much greater that yours and mine. It can be liberating to be in that much control

So remember, if you think your out of options, maybe failure is the one! Just think about it... and of course remember...Take as directed.
blake