About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, January 13, 2014

"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 Dummiesavailable 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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  1. Were you sedated for the procedure or general anasthetic? I can't believe you thought it was a piece of cake. I was such a mess during mine and I was wide awake. Then it bruised all my insides and ended in yet another hospital admission.
    Still in shock you found it a doddle haha just shows all you've been through.

    1. Hi, Sian!

      Yes, they gave me Verset, so I remember nothing. I'm so sorry you had such an awful time of it.

      You're right: I do think that had I not been through so much, especially in the past year, and especially with that huge impaction, I may have found it much rougher. Once your guts are being ripped open for weeks and then have an NG tube for days, things start to feel less traumatic! Also, b/c of the Oz tape I was expecting something horrendous. Dare I say everything's relative?

      And my GI was very experienced. He'd worked on my daughter a few times & no problems there either, but she had a total colectomy: so again, everything's relative, combined with skill. xxx

  2. I'm just relieved the procedure went well for you. Other than after care. I hate how the screen is right in front of the patient. No one wants to see that! I had a capsule endoscopy in the end, which was an experience. They thought after ten years that I qualified for one. They found ulceration and a hernia but the gastro consultant told me I had nothing. It was my gp that told me. So when we contacted the gastro he said that that wouldn't be the reason for my symptoms. So there is the state of modern medicine. Something as clear as day and even that is doubted. What hope is there for "invisible" illnesses?
    Try and take it easy. Grandma duties to fulfill soon. Xx

    1. What a nightmare, Sian. I get terribly upset when I hear this, the treatment you got and I'm so very, very sorry. And I do know what you mean! Remember how the ER sent me home with no medication, no pain meds, no diet instructions when I had pancreatitis as documented by my blood work? It just shows yet again, what hope is there for "invisible" illnesses if documented stuff is ignored? Sooo awful, an understatement.
      Thanks for the grandma statement. From your mouth to God's ears, as they say. My son called last night saying that they are still monitoring. It's week 36, finally. xxx

  3. Dear Irene, welcome back! So glad the procedure went well and appalled at the rubbish you had to put up with. Hope you are resting as much as possible. Keeping you and your family in my prayers. Hope all goes well with the baby-to be.

    I used the very same 'first do no harm' in a letter to my neurologist who is really not fit to do what he's doing!

    Take care, Alpa xx

    1. Hi Alpa! Thank you for your sweet greeting and well wishes. "Rubbish": how I love the way Brits have a way with words! It's just so perfect.
      I'm so sorry to hear you're having trouble with your neuro. It is so very difficult to find just the right doctor, especially when there are so many co-morbidities joining the whole mess. I wish you much luck in finding the right fit.
      And I wish you a really wonderful 2014! Here's to much-improved health! xx

    2. Alpa, how is your pneumonia? xxx

  4. Just direct messaged you on Facebook. As you know, I'm thoroughly disgusted with the cretins who've 'treated' you. I was thinking...my 2nd surgeon was a schmuck. But, the one good thing that came out of that surgery (incisional hernia repair) was the next morning. I wasn't supposed to be admitted but, the surgery kept getting pushed back and then it wasn't safe for me to be sent home from same day surgery. Anyway, I was in SOOO much pain the next morning and had a migraine. I asked for at least a Tylenol. These dumbass nurses said Tylenol wasn't on my chart as an allowed drug. So they gave me more morphine. Well, it turns out morphine gives me HORRENDOUS headaches and makes me itch. Finally I called my parents at home, they called the surgeron's service. He marched into the hospital soon afterwards. I heard him from the other end of the hallway yelling at the nurses for not calling him, for not using common sense and a bunch of other stuff. There was even cursing going on. Never before have I enjoyed hearing people be publically shamed to that extent.

    As always, I wish the best for you. And frankly, I hope you sue each ass with whom you've had contact and that you're at least compensated a little for the misery their stupidity has caused you.

    1. Hi Melissa. Sorry I've not been in contact in so long. It's just been a horrendous few weeks.
      I hear you. I can't believe the ridiculousness that goes on. I mean, so you really need to call my surgeon in the middle of the night in order to put some vaseline on my NG tube because I'm concerned that the rubbing is making a sore? I'd have said, "don't bother him with such nonsense, call for the important stuff." Sooo stupid and idiotic.
      Hope you're doing better these last few days and that the pup is getting along with everyone! xx

    2. I shouldn't have used those words, "stupid" and "idiotic." The system is broken and I do feel sorry for EVERYONE involved. xx