Friday, April 9, 2010

Hysterical White Female

I signed up for a weight management clinic because the high blood pressure really lit a fire under my butt. Otherwise I would've soldiered on alone because the last thing I want is to go to the doctor even more. That is NOT my dream.

The deal with PCOS is I need to follow a low carb diet which sometimes messes up magnesium and potassium levels (per past personal experience). So I wanted to work with a doctor on losing weight again (pregnancy and early motherhood was not kind to my BMI) who would order the blood work and track those levels. I also wanted to see if there were any good alternatives to metformin now that I'm not trying to get pregnant. I can haz real drugz now! Woot!

Okey dokey. Off I go to see the weight loss doc.

Well, unfortunately, while the doctor is nice enough, I have pushed his 'hysterical white female' button. I am an intense person, a creative thinker, insatiably curious, a fast talker, am well read and I know that sometimes I 'hit' people wrong. It's a consistent issue.

In a corporate setting, with time, people realize I am really good at what I do, I don't play games, I am reliable and helpful but with a quirky kooky flavor. Eventually they come around and I gain credibility. It's hard to achieve similar credibility in a 20 minute doctor visit that makes me talk even faster because I know time is short.

So I had a follow up appointment yesterday with the weight loss guy. I wasn't sure if I was going to make it because my breathing has been dodgy. I'm better in that I don't need to go to the ER, but I'm not stable either. I feel great sitting on my ass, but attempt anything more than that and I hit the wall.

The problem is, a lot of things sound like a great idea while I'm sitting on my ass feeling pretty good. Then I do them and they don't go well. Such as moving some heavy furniture up stairs a couple days ago.

I decided to try the appointment anyway because being on prednisone for a month is not going to help weight loss, I need all the help I can get.

So I got there and couldn't feel my knees. Just was really weak. Then I couldn't breathe well. Then I realized, I hadn't been breathing so hot all day, but had been ignoring it.

Living in 'I'll be fiiiine land'. Agh. Stupid me. I have to get better about this fiiiine shit.

So I sit in the waiting room and enter 'the zone' where I'm just working on finding where I'm going to get my next breath. It's a delicate process. Breathe too deep and I make it worse. Breathe too shallow and I make it worse. I have to find the sweet spot between the constraints so that I don't completely lose control of my breathing. It's a very zen thing, except it hurts.

I finally take my rescue inhaler which brings some minor relief, but by now it's too late. I'm getting tighter. Suddenly my chest and shoulder muscles are heavy and I can't lift my shoulders to breathe--the muscles are fatigued. I truly had no idea I was this far gone. At this point, I'm in the exam room waiting for the doctor and I realize I am in trouble. So I start to panic.

Panicking is never good. Don't ever panic. It makes things so much worse. I am usually so good about not panicking, but I had hit my limit.

I lost control of my breathing rate and basically had an enormous charley horse throughout my lungs--especially on the right side where the scarring and growth are located.

I was really upset about it.

In tears.

I was embarrassed because everyone was watching.

Mortified really.

Afraid I was going to end up back in the ER.

Angry that I had let this happen to me.

Frustrated that I still hadn't vanquished this latest episode.

Wondering if the asthma had damaged my lungs to the point where the coarse 'wheeze' torturing my airways was ever going to go away.

All of this was going through my mind and it made it very hard for me to focus on gaining control. I have not lost control like that in over 10 years--I am the calm, cool, collected asthmatic.

Apparently, however, I looked like a big faker????

Because once I finished the nebulizer treatment they gave me, the weight loss doctor started to play mind games with me. "Do you want to have asthma? What if you could have something else?"

Apparently, I wasn't wheezing enough for him? Or something? I had been wheezing all day but was clearing the 'coarse' rattling gunk that was the root cause with coughing, which is why I ignored the tightness. I cleared my lungs, felt better until the gunk came back. Wash and repeat.

So yeah, I agree with him. When he had his stethoscope on my back, I doubt there was a lot of noise. The gunk that had been rattling around in there irritating my airways went quiet, underground (but it came back out and tortured me at 1 am that night). Of course I was also intermittently holding my breath because it was the only way I could clamp down on the spasms and try to regain control. So I don't know how much wheezing there was to hear.

Regardless of how much I was or wasn't wheezing, who the fuck asks someone to answer that kind of question without disclosing the something else? Because how do I know the something else isn't cancer, you know? Are we playing 'Make a Medical Diagnosis Deal' and I have to decide which door to open? Really? Is he serious?

Play power games much?

Paternalistic dick much?

So I say, "Well I am not qualified to make that kind of decision. I'm not a doctor. I know in my medical records there is a pulmonary function test where my FEV1 is 70% of predicted." I knew this because my pulmonologist showed it to me, explaining she had sent it to the asshole allergist.

"But you also have normal pulmonary function tests."

I just looked at him as I couldn't figure out what to say. I should've clarified that yes, I have had pulmonary function tests when I'm healthy so, of course, there are normal ones. I mean, duh! I was not symptomatic when those were performed so they would not have shown much. They should be taken as a sign of successful asthma control. For some reason, he goes the opposite direction with it.

I suspect he's thinking I had those tests because I complained of being sick when, in fact, they were administered at every pulmonary visit for years regardless of how I felt. (And I hated them and actually their existence caused problems with the asshole allergist--I want to burn the damn things so no one ever sees them. Wait...is that even possible?)

I also should've pointed out he had access to my medical records and could have viewed my recent hospitalization records himself had he thought to do so. I had documented drops in oxygen. I have scarring and now a growth in my lung. The x rays also showed airway constriction. I had visits from three pulmonologists while in the hospital and everyone agrees I have asthma.

What does this guy know that they don't? Particularly given that I have a 6+ year long relationship with my pulmonologist. What is she missing that he is catching in just 2 visits?

Basically, he has decided I have a vocal cord problem which can mimic asthma and tends to have a psychological component. So, you know, I'm making it up and his asking me if I wanted to have asthma or not was a psychological hoop for me to jump through to see if I was emotionally invested in being sick.

You know, there is a power gradient in medicine that favors the doctor and it is ripe for abuse, even among the well intentioned. I am at the mercy of their education, intelligence and character --which all too often I have found lacking. To me, what happened yesterday was abusive. I felt manipulated and discounted. I hate feeling like I have no credibility or power and I feel threatened because this kind of stuff is when they start taking away medications and refusing to listen to me. It's the asshole allergist all over again, only with a slightly more palatable facade of faux sincerity.

I am also frustrated with myself. Obviously I am totally screwing up something as a patient and am too stoopid to figure out how to prevent these kinds of interactions. The other thing that angers me, is I let these nuts convince me there is something wrong with me. Why do I give them that credibility when their logic is so obviously flawed?

Now I don't know if I want to go back. I mean, I do want to go back and confront him on this, but do I want to continually subject myself to someone who thinks I'm a hysterical white female who just needs therapy????

No. Not really.

I am not hypochondriac, but apparently I play one in the doctor's office.

As far as standing up for myself, the doc in question sent me a follow up email inquiring about my food diary. I replied adding the following:

"I have some further thoughts on our conversation with respect to asthma that I will bring up at our next appointment. After that, I would like to confine our work together within the scope of weight loss."

And I've been working on what I'm going to say. His response to the boundaries I set will determine if I ever see him again. Now I just have to convince myself to make the appointment, which is proving harder than anticipated.

Note: This post references 'yesterday' but that's not right. This was all a few days ago, but I wrote it the next day hence the use of 'yesterday'. I'm not going back to change it, but I realized when I published the prednisone post that it made for a weird timeline so I wanted to clarify it in case anyone got confused. Timelines referenced don't actually coincide with a post's publication date.

5 comments:

  1. I came across your blog through the comments section of another blog. It is interesting to read about a patient's view of medical issues and (difficult) medical encounters.

    It sounds like you have had to deal with some tough medical conditions and some tough encounters with health care providers. I hope that writing this blog allows you to vent. I also hope that it allows you to reflect on the provider's responsibility to the drama, as well as your own. You did not visit those doctors and decide to personally make their life difficult, yet somehow you pushed their buttons and they responded in a manner that was not empathetic, compassionate, or helpful to you. Likewise, those doctors probably did not see you and decide to make your life difficult either. And yet somehow they came across to you as patronizing assholes. Clearly the two of you were not on the same page.

    Certain patients make me react, even before I meet them. Sometimes I groan inside after reading the chief complaint and past medical history on the chart. I know that there is no treatment that I can offer that will make the patient better. Some doctors call these "difficult patients". It is not helpful to walk into the room to meet the patient, already with a defensive attitude. Especially since that patient has probably felt neglected and abused by other doctors and walks in with a defensive attitude as well. Both the doctor and the patient does not want to get hurt.

    I have taken the effort (and risk) of commenting here, not to patronize you, but to try to reach out. Being on the other side, I have been trying to overcome the effects of difficult encounters with patients. I don't want to be so frustrated and angry anymore, and I am sick of the migraines, insomnia, and digestive problems that I get, as I stew about the negativity and the drama.

    Have you heard of mindfulness, and mindfulness-based stress reduction? I have found it helpful to learn about those concepts, and to work on embracing the present moment. It makes way more sense than ruminating about the past or worrying about the future. I'd recommend devoting some time to practicing mindfulness. Griping about bad experiences has it's purpose, but it would be sad if your medical problems became your identity. Live and enjoy your life, don't become the "pissed off patient". All the best!

    ReplyDelete
  2. No your comment is fine and very kind. I have no issue with it.

    I do reflect a lot on my contribution, but it is hard to see. I'm not about being right, I'm about making it work. Except I'm sure I don't sound like that in these posts when my emotions are running high. And truly the prednisone is fueling some of my more strident notes.

    Sometimes I do nothing wrong--wait until you read about the Jesus Freak doc in a few days. Slowly, as the stories start to come out, you'll start to think, like me, that I have the weirdest medical karma you have ever witnessed in your life. Seriously.

    Anyway...this episode here in this post, for example, I asked my husband what he thinks I'm doing wrong. (He wasn't there.) He says I talk too much--the roadrunner info dump. *beep* *beep*

    Except I was not talking at all until well after the nebulizer treatment. I was in tunnel vision just trying to breathe.And then I was attacked.

    I don't think there is much defense to be mounted in the way he approached me re: the asthma. He over-stepped. He didn't look at my medical records other than to find data that supported his opinion. The way he approached me was a power play enabled by the authority imparted to his position.

    I found it inappropriate. I would never ever treat someone that way and I've managed mentally ill 'migraine' 'victims' in a corporate setting. I've been on the other end of the power gradient myself.

    But we all make mistakes too. I know. I'm all about working with as opposed to working against.

    I have some theories about this doctor's practice that I will expand on in a future post. There were some niggling things that 'hit' me wrong in the first visit, but they weren't big enough to really dwell on. Maybe now they are.

    I will say, I have good instincts about people. I trust myself in that regard implicitly. I think this doc is probably a good guy, but he's got a bias too.(And I have biases too, everyone does.) He's also perhaps a wee bit passive-aggressive which is always a horrid match for my personality. I am an extreme straight shooter and excruciatingly honest, very moralistic--this explodes when it comes into contact with passive-aggressive behavior. The dynamic drives me nuts and I'm me!

    I would not spend the time to try and work it out with him if I didn't think he was worth it.

    M

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  3. I cannot comment on that doctor's behaviour, or any of the other doctors that piss you off. I don't think it really matters, anyway. Because you cannot control or change their behaviour. The only thing you can change is how you interact with doctors, and how you react when they "behave badly". It seems, through the tone of your posts and your blog description, that you are suffering a great deal, both because of your illnesses, but also because of how you've been treated.

    The beauty here is that YOU have the power to determine how much you suffer. We can face the best of times and suffer greatly, and we can face the worst of times without suffering. It is not easy or natural, but you don't have to let jerks get to you. "No one can make you feel inferior without your consent." - E. Roosevelt

    I hope for you that you do not set up a self-fulfilling prophecy here. All this anger towards health care professionals may make your future encounters just fuel the "pissed off patient".

    Anyhow, I have said enough. I hope that one day you will realize that you have the power and the strength to no longer be the victim. I leave you with another quote:

    Grant me the serenity
    To accept the things I cannot change;
    The courage to change the things that I can;
    And the wisdom to know the difference.
    - The Serenity Prayer

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  4. I recognize and appreciate that you are coming from a place of sincere kindness and good intentions. :)

    But I don't feel the serenity prayer isn't really going to result in better medical care for me.

    Right now, I'm focusing on confronting these situations so that I can change the dynamic. As opposed to just walking away over and over again. I am failing myself as an advocate and that needs to change.

    I hope you will keep reading and gain a broader perspective of what fuels my ire. There's so much more than what I've posted thus far.

    M

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  5. Grr. That should say 'I don't feel the serenity prayer _is_ going to result in better medical care for me.'

    Not isn't.

    M

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/