Thursday, November 1, 2012

Random Ramblings on My Medical Worries and the Past... (in a really really long post)

This is one of those long, rambling posts that I sometimes write.  The thoughts that led up to this post began in response to a comment that I received earlier where I was told that I was a jerk for my description of my earlier doctor's appointment, because the person was sick of how doctors are portrayed.  The aforementioned (unpublished) comment got me thinking about my rather complicated feelings about medical care and my cynicism (and skepticism) when it comes to the medical advice I've received in the past years.

I'm not really sure this post is worth reading.  But since it helps me to put words down to understand what's going on in my life I thought I'd give it a try.  And this, rather long, very personal post, is the result.  I'm not sure it's even worth reading for anyone other than me, but, here it is:  


For a long, long time, I blindly believed pretty much anything any doctor told me.  After all, the person with the MD after their name was obviously the expert, and their judgement would obviously be more sound than my own.

That has changed quite a bit in the past year and a half.  I've found now that while I value the information and advice that I receive from my doctors, I'm also not quite as ready to abandon my own instincts because someone has told me that they think that it's the best thing for me.

The road that lead to this change in perspective, and reasoning, wasn't easy and tonight as I began to think back over the bumps, some big and some small, I was surprised that the loss of blind trust didn't come quite a bit earlier.

I think that in part, that's probably because the first doctor that I remember going to was so great.  He was one of those fantastic small town family practice doctors that searches tirelessly for answers when there's a problem.  And yet even back then I had my first glimpse of less than stellar advice when my headaches began and our doctor, having exhausted every possibility he could think of, sent me to an allergist in "the city."  The allergist referral was a great idea.  The allergist himself, not so much.

I was around 11 years old and was having headaches every single day.  The allergist walked by the waiting room where I was sitting with my mom and glanced out.  He saw me sitting, legs curled up under me, reading a book.  Now perhaps for a non-reader, the sight of a child reading a book is odd.  For most who love books, however, it's pretty normal.  Reading was something I snuck in whenever I could.  I saved my money to buy books.  When I wasn't reading I was writing stories.  It was, quite simply, what I loved doing with my free time.

My mom and I were called back into an exam room and the doctor entered.  He began to lecture my mom about my stress level.  Look at her sitting in a waiting room reading a book.  I was obviously under an incredible amount of pressure.   He told her to reduce my stress level and refused to run a single test.

It would be another 19 years of migraines before we discovered that 3 common food allergies triggered my headaches and that by avoiding those particular foods I could have 4 migraines a year instead of 4 migraines a week.

I wish the man had simply run the allergy test on that day so many years ago.  It would have saved me hundreds of migraines.


Fast forward to college.  My junior year, while training for the upcoming rugby season, I began experiencing back spasms.  These weren't just little twinges.  One day while running at a sprint my legs just gave out.  I crashed across the field... As the months went on the problems occurred more frequently and were excruciating.

I went back to the school's health center over and over again as the problems increased.  Pain shot down my legs.  My lower back was swollen.  I was told I'd pulled a muscle and that I was okay to practice.  And so I kept playing after being told that I could (not very bright, I know).  When I finally sought out a "second" opinion (which was really more like a 5th opinion since I'd been in to the health center so many times) the orthopedic surgeon immediately declared that there was a major problem and ordered rounds of tests to confirm a herniated and later ruptured disk (while explaining that full contact sports were a no-no... forever... which took out my three main activities: karate, surfing and rugby... none of which were easy on my body).

Next to come was the moment that would result in my major fear of needles being allowed anywhere near my spine.  I was 22 when I went in for my fourth epidural in a year as a result of the damaged disk.  It was the type of unpleasant procedure where you had to be awake, while heavily sedated, so that they know they've injected the right spot.  I think that I had started screaming when they ordered the two injections of morphine.  Something was different this time.  Something was wrong.  And then the morphine hit my system and I was instantly better.  I felt great.  There was nothing to worry about.  They sent me home an hour later and I was fine.

At least I was fine until the middle of the night when the morphine wore off and I started shaking uncontrollably.  In the month that followed I would lose 30 lbs from my 133 lb frame.  The shaking continued.  I couldn't keep down food.  And the headache... which felt like my head was being smashed in a vice... went on and on and on.  I called the office repeatedly and was assured I'd be okay and that the symptoms would go away in time.

Finally I received an incredibly odd call (that bothers me to this day).  There was an alumni at my school who I knew casually who had asked me out several times (who I never went on a single date with).  He was in the healthcare field (but wasn't a doctor or nurse) and I knew that he was friends with the surgeon who had performed my epidurals.  He called me to "check in."  He'd talked to my surgeon and knew that "things had gone wrong."  He'd actually been told far more about the procedure and what had happened than I had.  My doctor had asked him and asked him to call me to see how I was.

I was extremely, extremely bothered by the call... whatever happened to doctor/patient confidentiality?  But I actually liked the doctor, and knew that the medical mistake wasn't malicious (and thought that what he'd shared just showed incredibly poor judgement) and so I never said a word, although it seemed like something that was certainly an ethical breach.


In the more recent months, many of you have been along on the fun 10-hospital visits in 10-months ride.  Much of what happened I talked about here.  I talked about miscarrying alone in the ER after calling for help.  I don't think I ever told you how, when I ordered my medical records I found that they'd been changed to include exams by doctors that never entered my room (I didn't see a doctor in either of my visits while I was miscarrying).  The exam records were dated as being recorded after I began questioning the thousands of dollars of bills that I received, but before I wrote a 20 page document detailing everything that happened and received forgiveness for the bills, along with a two page apology (that also explained how no one who I saw in the hospital worked for the hospital) from the hospital.  The woman who read my description of events actually began shaking as she reached the second page, before assuring Paul that the situation would be addressed immediately.

I've talked here about my extreme illness in the three months that followed and how I repeatedly sought help from doctors and was told that it was all in my head and that nothing was wrong with me... and many of you prayed for me until finally, after many trips to the hospital and doctor's office, I found a doctor who did another (more invasive) ultrasound and instantly saw that I'd retained the placenta and ordered a D&C (the anniversary of that surgery was three days ago).


It was that night at the hospital, during the miscarriage, that began the change the way I thought about going to the doctor or the hospital.  I realize that I'm now extremely vigilant when it comes to my own medical treatment.  I want to know what's going on.  I want to know what the risks and benefits of my treatment options are.  And I know that listening to my gut when something doesn't feel right can be lifesaving.


I'm really, really happy with the treatment I received at the hospital this past month while I was ill.  It actually restore a lot of my faith in the medical community after the trauma of my treatment during the miscarriage.  I feel incredibly lucky to have found my current doctor, although I'll admit that I'm not a huge fan of his office partner.  And I do believe that his advice, even on the epidural, is well intentioned (apparently for some my previous post didn't convey that to everyone).

But I also believe that "standard operating procedure" in OB cases often tends to be overly cautious as a result of the many malpractice lawsuits that occur in our country.  I don't blindly accept that doing something just so a doctor can say he acted proactively, necessarily results in the best treatment for either the mother or the baby.  I think it's often a case of doing something, simply so, if anything goes wrong, it can be said that "something was done."

I do believe that one intervention often leads to another and would like to avoid the slippery slope that could lead to an unnecessary c-section #3.  If a c-section is necessary I will readily agree to it.  However I'd rather not do anything that will help speed up the process if it can be avoided.

Having researched (and personally experienced) the risks of having a large needle stabbed into my spine is the reason that I will be refusing the standard advice that I received.  Knowing how being flat on my back would reduce the likelihood of success during this birth also plays a major roll in wanting to avoid this particular intervention if it can be helped.

As I enter into this final week of my pregnancy, I'm praying that things go smoothly.  I'm expecting them to go smoothly.  I trust my doctor, just not blindly.  I'll be using my brain and my instincts to weigh what I'm told and to make decisions for myself.  I'm sure I'll agree to much of what is suggested, sometimes less than enthusiastically (no to the epidural, but okay to being hooked up to a monitor and having a heplock...), and will say no to other "standard" options.  And I'll be flexible as we go along, because it's childbirth and things can happen fast.


Looking back over this post, I guess my biggest realization isn't that any of the doctors mentioned above were intentionally insensitive, incompetent or cruel (okay, with the exception of the guy who told me that the massive bleeding I was experiencing was "psychological").  However I have realized that doctors are human and that they make mistakes.  Abandoning my own intellect and ignoring my instincts to trust in a diagnosis that just doesn't seem right, has never turned out well for me... and I've finally found my own voice while in these sometimes tense situations.  I've learned that I can be polite but adamant and stand up for myself and take responsibility for my own medical decisions and live with the consequences of those decisions.  


  1. I hear you...I've had my share of good and bad doctors, from the patient and kind grandfatherly old man doctor, who explained every single test and gave reasons for the diagnosis he gave me and reasons against the diagnosis he decided against, to the (as you say, well-intentioned) doctor, who, upon learning that a young teenager was having joint pain that didn't seem like textbook arthritis, decided it was from a misalignment of my knee caps and told me to wear knee braces. I ignored the voice in the back of my head that told me that knee caps don't explain pain in every joint and bought and tried the braces. They didn't work. I wish I had pushed harder, in retrospect, but I didn't.

  2. There's absolutely nothing wrong with you questioning anything and everything that the medical professionals are doing or want to do when it comes to treating you. Always remember that you are the one paying them. Some of the doctors would like you to think that they are God, but they're not.

    I had a lot of blind trust in doctors up until I was in college. I had a super liberal professor who constantly was telling us to question everything from the government to the meds your doctor prescribes and anything in between. I took that advice to heart. Do I probably irritate some doctors as I ask lots of questions? Maybe I do, but I'd rather make sure I'm making the best decisions for me and my children than blindly trust someone just because he or she has a medical degree. You are absolutely right to make sure you are getting the treatment you need and the way you want/need it.

  3. I just wanted to say that nothing in your previous post came across as "jerk"-ish and I am a physician! Patients have the right to ask questions, and they should! Many times physicians are over-worked, over-tired, and maybe are not thinking right. Questions can keep us on our toes ;-) On the flip-side, we do appreciate respect for our profession/personhood, and time for other patients.

    ...and that morphine story is really scary. the doctor or his associate should have called you directly.

  4. My mom was a physician's assistant while I was growing up. I got all the anatomy lessons in proper medical jargon and stern lectures on making sure I understood what the doctors wanted to do and why. It likely made some doctors uncomfortable but I was less resistant to the procedure if I knew what was going on.

    Take responsibility for your health and understand. Not telling a doctor some trivial (to you) bit of info might be the key to whatever is making you sick (like that guy who caughed on Sadie when you were looking at pumpkins). Be the squeeky wheel that gets the oil. Being proactive will get you better service on time and with better results. I finally got that through my head when I had my appendectomy two months after a c-section. I asked for a pump to express my milk so I could keep my supply up as I wasn't allowed to feed my child (nasty class D drugs). I was given the best service ever because I knew what I wanted and I was up front about it. :)

    Good luck for this next week. How long will they let you go before you have to have a c-section?

  5. I haven't had anywhere near the bad experiences that you've had, but I mistrust doctors...well, the "medical profession"...intensely. I don't blame you for using your own sharp mind to discern what's right for you.I think you've been prudent to question what you have questioned, to do your own research, to ask questions, etc. Carry on!

  6. I've always questioned the wisdom of doctors. Maybe it has something to do with what my parents experienced with me. I was going through severe pain with my liver shutting down and none of the pediatricians did blood work. One of them went so far as to say it was in my mother's head.

    So my mother vigilantly went to several doctors and starting charting the episodes. One pediatrician finally listened to her and ordered basic blood work. She came back to the exam room wide eyed explaining that my liver enzymes (if you have a lot it dumped into your blood stream indicates liver issues) were several times higher than an adult's. She basically thought the pain was because my liver was not functioning. She sent me to a specialist who told my parents that with the next episode take me to the ER. Where the specialist warned my parents that I might die.

    And the rest they say is history. Nobody knows to this day why my liver periodically malfunctions. There's no name for my disorder. And as far as I know there's only been only one other person in the world with the same prognosis.

    I suppose it's been taught to me not to ignore things. And to stay vigilant about seeking the truth.

  7. Yikes! I am so lucky that my insurance plan lets me choose pretty much any provider and hospital that I want. I am pretty picky about who we see, I think you are right to discern all these medical decisions, taking into account what you know about your body and what the doctor is recommending.


  8. Learning to rationally weigh doctor’s advice and sometimes balk or ask for a second opinion is important – even if a scary/uncomfortable thing to do (I am very shy by nature so understand the difficulty). Some doctors are very good, and others are not – for many reasons. Some are stressed, or overworked, and just miss things. Others became doctors because of the money or prestige, and just really don’t care about treating patients. And others are good medical researchers, but really should have stayed in research, since they have poor bedside manner, so don’t pay enough attention to their patients to really diagnose them. Plus there are so many possible treatments today, and new diseases that are treatable, that it really is harder to be a doctor than it was in the 1800s, when the list of treatable conditions, diagnostic techniques, and treatments to try, was SO much smaller.

    And especially with something like labor/delivery, every woman’s response is so different, that you can’t just apply a “one-size-fits-all” treatment regimen, which is hard for the “scientisty” type doctors to accept (as a chemist I understand this dilemma – I often want people to follow nice little rules and patterns of behavior like atoms, but they just don’t). Personally, after 3 deliveries with/without an epidural, I have found that I am one of the rare cases where an epidural, and being stuck flat on my back is BETTER for the baby, because my labor tends to go TOO fast after transition. My middle child was born without an epidural (due to getting to the hospital 15 minutes before the birth – another lesson that I have learned is contractions 5 minutes apart for me means baby will be here in under an hour – so get MOVING – I have never had a single contraction until the day that my 3 were born). But without a drug induced “slow-down” to labor before the birth, and with the extra pain making me WANT to push harder, he was born in 1 push, and ended up with black eyes, ruptured blood vessel in 1 eye, and a hematoma on his head about 1/3 the size of his head that took 2 months to go all the way down, plus I had a second degree tear. He recovered completely, but I opted for an epidural as soon as I got to the hospital with my 3rd (which took a bit of convincing since my contractions were 10 minutes apart and I was at 4 cm – the doctor didn’t want to believe me that the baby WAS coming in the next couple of hours – turns out I WAS right), and was able to avoid any damage to him or me due to intentionally slowing labor down a bit (i.e. took 3 pushes instead of 1). I had to laugh a few weeks ago when you posted about the doctor who talked about women "spitting" out babies - I think that I do qualify for that category! :)

    But stick to your guns, and prayers for a good hospital experience this time.


  9. "Stick to your guns" is right! I had a terrible hospital experience with Baby Number One. Baby Number Two was born at home, through which I was able to learn how my body functions during the different stages if labor without the standard hospital interventions and "monitoring.". I know it's not for everyone, but I am extremely grateful to be preparing for Number Three (I'm due in 8 weeks) at home. My birth kit and labor pool arrived just the other day and I'm thrilled!

    I hope and pray all goes well for you!


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