Update

Sorry to leave you hanging, I got disgusted with the whole thing and had to walk away.

I've slowly been trying to explain the mess to my friends and family. At first, I just didn't have the energy to go through it all over and over, but everyone wanted to know how I was, what happened and I had to say something.

So the story came out because, once I started, I worked myself into a fine lather. I wanted to keep it to a simple 'fine, they're still not sure what the problem is, please pass the salt' but as I talked I began to get mad and it would all spill out.

My friends and family are just as horrified as I am.

This part of the story, which I didn't include in the last blog entry, especially upsets people.

Doctor: You didn't have pancreatitis.

Me: But I had stranding and a cyst on the CT scan.

Doctor: Stranding is something they say when they don't know what to say.

Me: ?

Universally when I share this part of the saga people say, 'Well, then why did you have the ERCP?'

And I reply 'Fuck if I know.'

Then they ask, 'So doctors just say whatever on CT scans and then other doctors order procedures based on that without knowing it's just BS?'

And I reply, 'Apparently.'

They always want to know 'what does your doctor say?'

All I can say is, 'I don't know. I won't see them until December unless I make a big stink and I'm out of energy for that right now. I can't face these people anymore. It's crazy town.'

I consented to the ERCP because I was told I had pancreatitis likely caused by Sphincter of Oddi dysfunction. The need to protect the pancreas from further inflammation was without question, so of course, I was on board with an ERCP.

If not for the diagnosis of pancreatitis, I would have waited and watched. I would not have rushed into the ERCP, there would've been no reason to.

To have the diagnosis rescinded after the procedure is...well, it's fucked up.  Thank God it wasn't a more serious procedure and that my complications worked themselves out at home instead of incurring the additional cost of hospitalization.

I just...WTF medicine? Why you suck so much?

I can't even say whether or not the procedure worked. I was eating better three days prior to the ERCP. The side effects of the procedure set me back for a few weeks, but I am now back to eating. Am I eating because of the ERCP or would I have gotten here on my own? It's impossible to say.

And FYI a six week deprivation diet of yogurt, pudding and kefir doesn't end well. I've been eating EVERYTHING now that I can tolerate food. I lost roughly 10-12 pounds while sick and have wasted NO time in gaining it back.

I've been eating gluten, sugar, carbs, stupid junk food, fruit, ALL OF THE FOOD, I EATS IT.  It's crazy and also bad for me. There is nothing I won't eat. NOTHING. All my efforts to abide by a low glycemic, vegetable loaded diet are useless right now. I've lost all control and it's weird.

The gluten triggered the asthma, which at least finally gave me the impetus to avoid it again. I'm working on the sugar and exercising as much as I can to offset it all.

On the gluten intolerance front, I've found the familial connection. It's not just me and I'm not the first to have issues, just the first to identify the problem as gluten.  It hits in middle age and causes allergy type reactions (i.e. prolonged sneezing fits, congestion, red runny eyes, bloating), or, in my case, triggers asthma, bloating, joint pain and flu-like fatigue.(Sometimes I have the sneezing but not always.) So there are a few of us now avoiding gluten and swapping recipes. Some of my relatives have been trying to figure this out for decades, trying all sorts of health diets to ameliorate it.

I'm Not Crazy, Am I?

I've been thinking about gaslighting lately.

From Wikipedia:

"Gaslighting is a form of mental abuse in which false information is presented with the intent of making a victim doubt his or her own memory, perception and sanity.^[1] Instances may range simply from the denial by an abuser that previous abusive incidents ever occurred, up to the staging of bizarre events by the abuser with the intention of disorienting the victim."

And that's pretty much how I experience the US medical system.

I tried to make an appointment in the other hospital system and couldn't get anywhere. That was round two of trying and failing, although this time, I'm just trying to get into primary care not a GI clinic.

My birth control pill was obsolesced, it took a week to get a new one. I followed up twice, the pharmacist followed up twice and who knows what the OB's office was doing. I know one thing they weren't doing...their job.

I calculate that the lead up to the ERCP itself had a failure rate of 67% across three main events when it came to answering the phone, making appointments or returning phone calls.

Tell me again how amazing the United States health care system is, maybe I'll believe it this time. At the moment I'm feeling like it should be a crime to fail to make an appointment for a patient or return a call after a procedure with such a high complication rate.

As for talking to the doc who did the ERCP:

1.I never had pancreatitis. A statement that kind of threw my GI doc under the bus. I wonder how they feel about that.

2. I can take Advil. There was no reason for me to listen to the discharge instructions (even though they were all I had to go on, plus how was I supposed to know?)

3.It's just surgical gas pain that is:

-point specific
-worse with food
-relieved somewhat by position
-and lasts for days (and counting).

Uh-huh. Okay. Steps slowly away from the crazy doctor. Their weird gas pain bias will come back to bite them on the ass. I hope it is someday soon.

I don't know how to stop the madness other than to refuse to have surgery for the hernia. I can't face this again in the near future. It's too much.

The List

That pic is pretty much how my week has gone. Ha.

I seem to be sick now. With like a cold or something.

I have a lot to say. At least three blog posts planned out in my head.

But it's not going to come out.

So, a list.

1.Mental impairment from anesthesia leads to...shopping. I don't know if anyone remembers my 'I'm so miserable, let's buy things for a short retail high' tendency.  Anesthesia makes it worse. This time around I bought:

--Books for my kiddo because...public schools do not challenge my kid academically. There's some social benefit and being asked to write and draw help with her fine motor stuff, but that's it.  She's reading at a 2nd grade level and there's no differentiation for her, which is a shame because my kiddo is not the most motivated reader I've met. She needs an external push, but won't accept it from her parents.

On the flip side, I don't want to do stuff at home that pushes her even further ahead of the curriculum. I don't want to completely erode any ability for her to find school interesting/challenging. So I've been focusing on science and cultural fiction, things that broaden or expose rather than instruct. Some biographies of people like Thomas Edison that will lead up to a family field trip and books that can tie into art projects. (Her art teacher kind of sucks and she only gets art once a week.)

So we recently read The Dead Family Diaz which is a Day of the Dead book (beautiful illustrations, okay storyline). Today, we made multimedia sugar skulls to tie-in to the book. My kiddo adored this project. I would share pics but the jpgs won't rotate on this pc for some reason. Maybe some other time.

Not a bad use of money. We'll keep what we made and use them as Halloween decorations every year. However, we'll get to the amount I spent on craft supplies in a minute.

--Then I bought Christmas presents. A useful expenditure, if a little early. Things were on sale and I was high on anesthesia. I think I bought this stuff the day after the ERCP. Or maybe the books were first. I can't remember.

--After that I went to the craft store and this is where my lack of mental organization becomes apparent. All the other shopping was online. Actually going to a store had me wandering in circles just throwing stuff in my cart. I had a really tough time structuring what I was going to do.

Suffice it to say, I spent a lot of money on stickers, feathers, googly eyes and jewels. I believe we now have life time supply of these things. We own ALL the stickers! None for you! Sucka!

Someone please remind me to give my husband my wallet the next time I have anesthesia. I will forget.

2. As a result of my complaint to the patient ombudsman, I did hear from the doctor. It was all kind of moot and after the fact. And the doc has a strong bias in my opinion. My sense is the only pain they believe in is gas pain. There is no other pain in the world and gas pain is not a problem. I have more to say about it. It was a weird conversation. I am more confused than ever.

3.I ate food yesterday. Not so much today. I tried to sleep on my right side and I hurt myself. Things have flared up.

4. I found this pic in my computer. It's from...last year? Two years ago? Oh, I see it now in the file name, 2011. I thought I was hideously fat then, which is why I never shared the pic. Ha. The old me should see the new me!  I'll always be a big girl. I'm not tiny, but I was in good shape then and I wasn't satisfied. It seems I can only see myself in hindsight.

5. In the midst of the ERCP, I recklessly set up a last minute mult-author promotion dealio. It went amazingly well. Books were selling like hotcakes. It was very successful. Finally. Amazon glitched my last book to death, so it was nice to have a win. Especially in a week when so much other stuff sucked.

Those other authors I mentioned a while back did end up hitting the USA and NY Times lists. I came up with the idea, worked on the initial logistics and handed it off to them because I didn't have any books that fit the concept. No one thanked me. Not one author felt I had done anything material.

I've been doing a lot of re-evaluation as a result...of who is a 'friend' and who is a 'user.' Sadly, it has become apparent that I'm surrounded by users. In general, I'm a one-for-all, all-for-one kind of person and it seems I'm the only one.

Also people are lazy. OMG. LAZY. With no attention to detail. This created a lot of extra work for me. If the promo I ran had not benefited me, I would not have done it. Like herding ungrateful cats on crack.

Freaky Friday

I still have pain but I'm no longer counting down to the next dose of Tylenol. Which is progress.

I have the steroid munchies from the stress dose, but I can't eat anything. That's been interesting.

The asthma, which I haven't mentioned until now, is finally calming down. It flared quite a bit after the ERCP. Because I was so damn loopy from anesthesia and preoccupied with pain and nausea, I did jack to take care of it. I took my regular inhaler and that was it. I wasn't able to get it together enough to do more than that, which is kind of disturbing.

I sent my nastygram to the ombudsman. I don't expect anything will happen, but I'm meeting my goal of being more vocal about medical asshattery.

And I've decided I really need to switch medical systems. Twice now, I've had GI procedures at this place and been sent home with untreated pain.

The first time was the adrenal crisis. I remember the nurse saying, "I've never seen anyone in so much pain after an ultrasound."

And they sent me home anyway.

They run a lousy unit and they probably don't even know it because they aren't tracking anything unless the patient goes directly to the hospital from the procedure. No, they dump patients out the door and have no idea if their care caused any problems or not.

I'll never see that doctor again (it wasn't my doc who did the procedure) and unless they get curious enough to look at my file, will they ever know I had problems? I don't think so. So they continue on thinking they're fine, that what they're doing is fine and it's not.

If I can't trust them to listen to me or to properly take a phone call, then how can I let them touch me again?

I can't.

However, saying I need to switch and actually doing it are two different things. Plus, watch my insurance change to one system and one system only now that I've said I'm switching.

Cranky

Okay, so let's set the record straight, yesterday I was being overly optimistic.

I was also still higher than a kite.

Which is why it took me until 1pm to finally call the doctor and ask for some pain medication.

True to form, no one called me back.

So then I called the after hours number and spoke to a nurse who showed no record of my phone call earlier in the day. Meaning, the nurse who took my call did nothing with it. I ended up talking to some useless GI doc on call. Naturally, they couldn't do jack for me because they hadn't seen me.

We started to have the 'you should go to the ER' conversation and then the line went dead.

It's almost funny at this point. Only it hurts to laugh. Or breathe. My stomach is majorly distended because, I believe, my digestion has shut down again.

(And no, it's not gas pain from the ERCP, it's brand new distension.)

All I want is whatever the closest equivalent is to Motrin when you can't take Advil after surgery. Tylenol is not enough.

I don't know that I have pancreatitis with a capitol P or anything. Clearly things are aggravated. Yes, I am worse off than I was going into the ERCP, but I doubt it's serious. At least that's my impression based on my pancreatitis experience to date. I wouldn't go to the ER for it, not unless I started vomiting or something.

It would just be a lot more livable if I could control the pain better. My go-tos with all this have been Advil alternated with Tylenol and I've lost my mainstay, the Advil, due to the ERCP.

That being said, I'm not sure I would take a narcotic. I hate being loopy. Hate it. Aside from lacking the palate for booze, this is the other main reason I never drank, I don't like being out of it. Just look at this blog, which is pretty much dedicated to whining about how much I hate loopiness.

If there's no non narcotic option, then I'll suck it up, but I deserve the chance to have that conversation and not be blown off.

So since I'm cranky and all that, I finally called the Patient Ombudsman. That won't stop me from being in pain, but maybe I can spread the wealth. If GI people would have bothered to listen to me* or return calls, I wouldn't have to deal with this.

*Honestly, forget me saying "I'm in pain" and just go off my behavior. What patient have they seen wake up from general anesthesia and immediately lurch into a sitting forward posture while holding the right side of their stomach even though they are barely conscious? If you're a GI doc, how do you miss that? I saw every other patient in that room, they were all resting quietly, awake and alert. Nobody was rocking back and forth, moaning in pain except me. How did I not register as having a different experience?

May karma bequeath them with the same medical care I've received.

In spades.

And let's hope I see some relief today. This nightmare has to end sometime, right?

POST ERCP

I'm recovering from the ERCP. I've been scarce of late, not because I felt great--I've actually continued to have issues with the pancreatitis--but rather because I was trying to work ahead on my books in case I ended up in the hospital after the ERCP. I literally holed up in my office and wrote, pausing only to do what was absolutely necessary for my family.

So I had the ERCP yesterday.I think if I get through today I'm in the clear for ERCP induced pancreatitis. I've been really careful, not eating in order to let my system rest. I finally had some yogurt just now. So far, so good.

You should have seen my face though when the doctor told me every second or third patient ends up with pancreatitis from the ERCP. I didn't realize the odds were that bad. Actually, they're not bad, they are horrible. Really horrible. Wow.

I wanted to leave. I'd actually started to feel a bit better a few days before the procedure.I was even able to lay on my back and eat food, although I still couldn't rest on my right side. It seemed stupid to flirt with such a big step backwards. I wanted to go home.

Instead I stuffed some suppositories up my you-know-what that the doc said had been shown to reduce the risk of pancreatitis.

Then we marched off to anesthesia. They gave me a stress dose which was great. I'm glad we did it. It seemed to give me extra umph. It wasn't neutral, it did have a positive effect.

However, when I woke in recovery I was already holding my stomach and in immediate excruciating pain. They said it was the gas, but I know gas pain (hey, yo, not my first rodeo, guys) and that was not it. I had some relief by sitting up and leaning forward, which is, you know, pancreatitis.

Or my special brand of 'if you touch my pancreas, it will make me pay' pain. Thanks to various medical stuff leading up to the ERCP, I've learned my pancreas does not like to be disturbed. Touch it and I will cry. Like a baby. In fact, I was fighting tears already at that point.

Since they were unimpressed with my reports of pain, I begged to go home where I thought misery would be more comfortable. (It wasn't.) 

So I had pain, nausea and a migraine-like headache for a very loooong time after the ERCP. Because they did cauterize a sphincter, I can't/couldn't take anything really effective for pain either.

Anyway, the results of the ERCP...

Pancreas "drains beautifully"

They cauterized the biliary duct.

And I am so confused.

Can biliary duct problems cause pancreatitis? Google says something along those lines,but there's no definitive internet knowledge. I've looked at the anatomy (admittedly while still high on anesthesia) and can't figure out how that would work.

So did we fix a stand alone problem or the root cause of the pancreatitis?

I have no idea.

Shouldn't I know though?

I love how they dump all this vital medical information on you when you are not mentally competent. If a patient isn't competent to drive or make any decisions for 24 hours (it says that on the discharge sheet) WHY would you think they could formulate intelligent questions or analysis of any information given to them?

I'm not even sure I remember everything that was said!

My husband was there, but they wouldn't let him back so he could hear anything! Which was the whole reason I made him stay for the whole procedure, just so he could be there for that moment when they tell you what was done and why!

WTF?

I suppose I'll learn more at my follow up appointment in...wait for it...December.