Thursday, August 6, 2015

I Wish I Was Making This Up

Lots going on here. I hope I can frame it all coherently. We just returned from a lovely vacation full of seafoam green water and lazy mornings. It was a fantastic break and I'm thankful it coincided with finally feeling like I was over the diverticulitis. 

The big news on the health front is I finally got into the fancy pants hospital system, and so far, it is a disaster. No one wants to listen or properly review my case.

The appointment veered in strange and wild directions, from revoking various diagnoses to invoking other diagnoses and back again as the specialist played catch-up with the medical records. It went a little like this:

"You did not have pancreatitis.

Why did they take your gallbladder? It was fine.

You don't have Sphincter of Oddi Dysfunction. If you did, the ERCP would have worked.

You probably have IBS. Yes that can be point specific and high up under your rib cage.

Oh, I see. Huh. There were stones*.

You probably did have pancreatitis.

They did need to take out the gallbladder.

Still not sold on the SoD and still thinking you have IBS.

But I'd like to test for Celiac's and do some imaging on the SoD."

All of this was addressed to my husband, by the way. Which is why I bring him on some of the more critical appointments. He is allowed to exist**. I am not even allowed to speak. To wit, I was never permitted to explain I have been gluten free for a while now in response to the idea that I might have Celiac's Disease***.

So I had to pay for useless blood work because I wasn't able to get a word in edgewise and there was zero interest in anything I had to say. Everything I said was immediately shot down and negated. This is "care that cares****" folks. Lucky me!

If I had realized the blood work required me to be eating gluten, I would have attempted to be more vocal about it. Stupid me. I thought the specialist knew what they were doing. Gah. At least I was able to send a follow-up email later on explaining I no longer eat wheat.  

I have no idea what's going to happen from here. Do I do a gluten challenge? How do I mitigate the asthma and manage the risk of wheat + flu?

And I guess we'll be finding out if I'm somehow the only person on the planet with IBS so high up in the rib cage that it feels/acts like pancreatitis. Out of curiosity,  I read hundreds of patient accounts about their experiences with IBS and I don't match any of them.

I don't care about the diagnosis at this point. Call my GI stuff whatever the hell you want, just optimize my system so I can function. I get the feeling the gastro thought I was arguing against IBS when what I really wanted was for them to LISTEN to me already. 

My 'questioning' of the IBS diagnosis was focused on the lack of attention to details and the forcefulness with which I'd been put on mute as a patient. I mean, hell, just slap a ball gag on me when I walk into the exam room why don't ya? Or I could just not come to the appointment at all since my presence, apparently, isn't all that important.

As for the specialist...if they keep this up, I don't know what I'll do. Maybe they'll chill out. Maybe the various tests will offer some clarity and give me enough credibility that I'll be allowed to have a voice. It's really disheartening to have finally broken through the administrative dysfunction at this place and get an appointment only to find out this is the kind of doctor I'm stuck dealing with.

AND on top of all the BS above...My medications weren't even updated and I haven't been in this medical system for a decade. So they're planning to do general anesthesia for a scope, but have no idea what meds I'm on, what I weigh or what has changed in my health history. I'm going to go have to hunt someone down and bug them about updating their system. 

Or is it not important to know these things before you take someone's life in your hands? 

*Stones were news to me! No one ever told me!

**The problem is the hubby isn't so hot at medical stuff. He could tell the appointment was bad, but didn't have any idea of what to say--since he was the one with all the respect--to get it back on track.

***You know, Celiac's is a real possibility. 

****I made that slogan up.


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