08/31/2012: Where'd August go?

This year has flown by.  Just flown.  Poof.  Gone.

Weird.

So that's not really why I want to blog, so let's move on.

Yesterday I wrote a blog about this quack I'm working with.  I suppose I seem quacky myself going through the trouble of seeing this specialist (neuro-GI) and then completely disregarding his opinion.  And yes, that doesn't sit well with me.  Nothing about how things are going with this specialist (neuro-GI) sits well with me.  I couldn't quite pin down why but writing it out yesterday, I now get it.  And I now feel very secure in my line of thinking as well as that I can and should articulate this with the specialist (surgeon).

Prior to writing that out yesterday, I was just going to keep my thoughts to myself.  I basically figured that somehow not talking to the specialist (surgeon) was going to help me get what I need.  That's laughable - and is a big part of why this whole thing just seems wrong.  Being able to sort things out, though, helped.

I am a writer and I am a thinker but thinking by itself doesn't always get me from A - B.  Sometimes I have to write out my thoughts to truly understand what my thoughts are telling me.  Yesterday's blog was a prime example.  I don't know if you noticed but I went from starting with the man is a quack to actually understanding his point and appreciating his theory.

Wait.  What?

How can I think he's a quack and appreciate his theory?  And truth is, at the start of my writing yesterday, there was no appreciation. At the end, I'm not so sure the man is a quack.

What I am sure of is that he is thinking inside of a box.  Boxes and science rarely mix well.

Here's the blurb that helped me the most - and then I'll explain why this means so much to me today.

And don't you get that, quack man?  If we knew what caused endo, don't you think we'd be closer to a preventative treatment or maybe even a cure?  But we can't seem to find that cure, can't seem to find that preventative treatment, can't seem to find that way to stop endo from growing let alone happening.  Because while one woman exhibits symptoms A, B, and C, and responds to treatment X, another exhibits A, C, and D and responds to treatment Y.  Specialist doc gets that, that multiple women show multiple levels of progress through multiple treatments.  My pain doc gets that.  My ob/gyn gets that, my PCP gets that, my urogynecologist gets that.  But here I am working with this guy who is supposed to understand endo and be able to help with it and he's so stuck on himself that he can't see the forest for the trees!  It's all different you quack!  Yes, there are similarities but like pregnancy, every woman's body handles it differently.

Yes, there is anger here, too.  It is beyond frustrating that I, the patient, don't matter to this man.  That proving his theory is all he is after.  I do suppose I'll back off calling him a quack, though.  Because when I google this guy there is nothing but appreciation for him.  He does help a lot of women.  Just because he isn't helping me doesn't give me license to be a bitch.

So what does this mean to me today?  Or even last night, talking to Husby?

It means I feel confident in talking to doc-specialist about why I don't feel I should be pressed to continue working with this guy.  Here it is in a nutshell.

Neuro-GI guy believes that women have endometriosis because of an improper ability of the body affected to handle insulin.  To take that further, he believes that insulin - either through a sensitivity or a flat-out resistance - causes the intestines to spasm which is the source of all of the pain.

Neuro-GI guy and doc-specialist work hand in hand.  They also work with a third surgeon who typically does colon resections if those are warranted.  This trio have worked together for years and through their various angles are able to get women relief from endo.  Sometimes it's for a year, sometimes it's for 5 years, sometimes it's for 8 years, sometimes it's for 6 months.  It varies.  Endo is something that is different for every woman and while one woman needs a colon resection, a drastic change to her diet, and major "clean up" of endo, another woman might "only" need major "clean up" and a minor diet change, a third woman might only need clean up, and finally, a fourth woman might only need a change to the diet.

Doc-specialist believes that I might (might) have had a successful surgery back in March.  If I did, the fact that I'm still in pain means my diet is bad as well as that I probably have issues with insulin.  So he is trying to prove that one way or the other before cutting on me.

What I know now is that doc-specialist is pretty much on the needs-another-surgery side of the fence.  Maybe still technically on the fence, but he definitely is leaning that way.  Why do I think that?  Because he went ahead and ordered his pre-op tests so those would be out of the way by the time I see him next.  If he were truly on the fence and/or leaning to I-already-had-a-good-surgery, I don't think he'd have ordered those tests.  So, working with neuro-GI guy is the final proof, one way or the other.

Neuro-GI guy asked Weds when surgery is scheduled for.  So even he knows that he's not really helping me.

My problem with Neuro-GI guys treatment of me is that in spite of the tests stating otherwise, he's stating I'm still all screwed up and that somehow I'm getting my bloodwork to lie, getting the EEG machine to lie, and lying myself about things like regularity.  So since I'm all full of lies, he's just going to treat me.  But he's messing around with hormones.  He's tried to give me one hormone that should I start taking it, even though my natural balance is just fine, my body will stop making that hormone and I could end up on this med for life.  There is nothing warranting that med.  I'm just supposed to take it because he knows best.

How do you trust someone that isn't really watching out for longterm well-being?  I don't want to be on meds forever.  I don't want to turn any of this very real problem into even more real problems.

As I've stated, my diet isn't my issue.  Even neuro-GI guy could agree to that on Weds.

Initially I was scared to go back and tell doc-specialist he has me working with a quack.  And because of anger, yes, I probably would use poor terminology like that.

I'm not scared of that anymore, though.  I guess 1) because I'm past the anger with this guy and 2) I can now articulate exactly what my problem is.  And my problem is this, in a nutshell.

Neuro-GI thinks in a box.  He assumes because I have endo (which he's proven) that I should exist in this box that he thinks in.  But the problem is, I don't have the other issues he commonly sees with endo.  I don't have the abnormal insulin levels, the abnormal blood sugar levels, the crazy active intestinal tract, or the inability to process natural foods.  I am outside of his box.  And instead of seeing what that means and adapting, he's just getting mad at me and literally calling me a liar.

How do you get bloodwork to lie?
How do you get an EEG machine to lie?

I will be candid with doc-specialist.

I don't think my frustration levels are helped by the fact that neuro-GI guy just wants to sell me his products. I heard again on Weds that my flaxseed oil is no good since I don't buy it from them.  I also heard that my body cannot process any flaxseed oil other than what they sell because only they have the right production process; but last month the excuse was only they have "real" flaxseed oil, what I have is probably synthetic.  No, neuro-GI guy doesn't make this stuff himself, he buys it from another company and resells it.  I also heard that my body cannot possibly break down omega-3's so I should only be getting omega-9's.  When I asked why my body could not break down omega-3's I was told I wouldn't understand since I'm not a doctor.

Alright.  You're right.  A BS in Oceanography, a BS in Geology, minors in Physics, Chemistry and Math - you're right - I can't possibly figure anything out.  I'm dumb.  I get it.  You're right.  Thank you for being there to lead me oh great doc.  I tell anyone I'm a Geophysicist and common response is "oh wow".  Even docs, those who bother to ask, greet that with "oh wow" - and I, of course, say "oh wow" to docs.  But this guy...

I don't do blind following well....

To add a frustrating side trip to an already frustrating journey is hard.  Pain doesn't make these things more tolerable...

Sigh.

But I gotta give the love.  Tessie Rose took the time to tell me her thoughts about yesterday's blog and that means the world to me.  Thank you so much, Tessie Rose!  And I agree completely.  Thankfully, writing out yesterday's blog helped me see that - which is precisely why I blog.