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
Thursday, February 25, 2016
Sunday, February 21, 2016
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
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
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