Energy in the Hole

I'm sloooowly recovering from the whole food poisoning thing. Pancreas seems to be doing well, too. I actually ate some ham and bean soup yesterday and had no pain afterward. So I ate it again today and just a little twinge.

(The big drawback for me re: food has been cooking for the family while I'm starving and unable to eat anything I'm serving. Every so often, I lose my mind and try things. The soup was an experiment that turned out well.)

The only thing, I'm sooooo tired. I don't understand why. Is coming back from pancreatitis a big deal?

I've been getting a lot of sleep, going to bed early even. Energy during the day is okay, but I poop out around 2-3pm and just don't seem to come back online again.

Maybe it's all the extra sugar in my diet these days. Even a 'healthy' yogurt has 20 grams of the stuff, and, if that's all you can eat, it adds up. PCOS is not good with sugar.

I don't know.

I just want to be back to normal and I'd like normal to stop being a quick rest stop between episodes of medical mayhem.

The Pissy Pancreas Goes on a Trip

Well, that was a mistake. I went with my family on our little adventure. I wanted to be there when my kiddo saw everything for the first time. Unfortunately, it was a little much for me.

The good news? It looks like we all had food poisoning or something. I was the only one to vomit, but it wasn't necessarily my pancreas gone wild, which would have been much more serious.

However, I really needed to be in bed on Sunday. I was just wiped from being sick still and my diet of Kefir and Greek Yogurt made things worse. It couldn't give me enough calories to heal from illness and hoof it all over the place. I'm hungry to the point of nausea most of the time these days.

So I had 550 calories to sight-see on. By the end of the day, I had a horrible headache. I tried a bunch of little tricks to try and ameliorate things. Some Emergen-C packets in the hopes that would help. Nope. I ate some Welch's fruit snack thingies for some quick calories thinking I had low blood sugar. Not happening. I didn't need sugar, I needed food. Real food.

Then we hit the Hard Rock where the chef graciously grilled a plain chicken breast for me. It was a risk to eat it, but, the second the protein hit my stomach, I began to feel better. My pancreas even let me eat it without any protest.

I was so excited. I'd eaten real food and it didn't hurt! But then my pancreas spent the entire 4 hour ride home cramping and clenching in my gut. So, not a win.

I'm back to Greek yogurt this morning and the headache of hunger has returned.

Bile

And then I started vomiting bile last night. Among other GI nastiness.

I think it's my body just purging an ill-advised dinner, where my sense of starvation won over my need to not eat anything exciting. The food passed through my intestines almost whole.

I'm concerned, but not thinking this is serious. I need more data to panic.

Unfortunately, we have a family plans this weekend. Cool, exciting stuff that I really want to be there for. I'm not sure, now, that I can or should be traveling around. I don't want to subvert fun with all my bile either.

Conundrums in Weight Loss

I've lost about 5lbs as of today. I haven't been weighing myself because my stomach is HUGE and so I assumed all the sugar/carbs in my diet were making me even fatter.  I mean, I can't even cram myself into my fitted pants right now. Surely, I'm gaining weight?

Weeell, not so much as it turns out.

Apparently, I can weigh less, but be bigger than ever.

FYI that's not how weight loss is supposed to work. My body has some explaining to do.

The only reason I stepped on a scale was because I had a doctor appointment. The scale was in the waiting room where people could see the weight. It was potentially mortifying. Fortunately, I had a sensitive nurse who blocked the digital display to give me some privacy. However, that didn't keep everyone in the waiting room from trying to see, which was unsettling. Not the kind of group think you want to see in a medical setting, you know?

I pointedly looked away when someone else was weighed. Their nurse didn't bother to hide the display which I'm pretty sure hurt their karma.

The 'surgery' should be later this month. I don't think anyone is going to argue about the stress dose, which is good.

Of course, I seem pretty stable. Who knows? I might be able to do without steroids, but I think it's just better to play it safe.

The one wrinkle is my positive scratch test to fish. I don't know what they're doing that involves fish in this procedure, but all my paperwork from them said to mention any allergies to fish. So I disclosed it and we'll see what happens.

I still keep searching, hoping to find happy ERCP stories, but all I find are nightmares. I hope this is a good decision with a good outcome. I hope the people on the internet do not represent a majority, that all the shiny happy ERCP patients are too busy living their lives to talk about the procedure on the internet.

What to Eat with Pancreatitis

Here ya go, internets, the answer to the most often asked question about surviving pancreatitis:

What the fuck can you eat?

Nothing but fat free Greek yogurt.

Which gets old real fast.

It's all up and down over here. One day I think I'm over it, the next day I'm so bad, I wonder if I need to go to the ER again. I would say it is horrible and awful, which it is, but it's still not as bad as adrenal stupidity. Although, it does hurt more and is just as frustrating.

My GI tract isn't working correctly. I have a very distended stomach at times to the point where I'm short of breath and my abdominal muscles spasm from the pressure. I often look like I'm very pregnant. It's worse if I try to eat anything interesting. Things just aren't moving. At all.

I've been googling the ERCP procedure with poor results. Most of the patients online talking about it are from 2010 or earlier and they all have had a horrific experience. The one person I found who had a good result only had 8 weeks of relief.

Did the complaining stop in 2010 because the procedure improved? Are there fewer complications now? And I keep seeing people talk about having had, like, 5 ERCPs. Am I going to have to do this over and over?

Recipe for Better

I think I'm coming through to the other side. I hope! Oh boy do I hope!

There's still pain, but it is much reduced. It's possible the swelling in my abdomen is going down as well, but that may be wishful thinking.

I'm on, like, day 7 of wearing 'soft' pants.  The idea of wearing anything without an elastic waist makes me cringe.

During the worst of it, I just kept telling myself 'no fever, no vomiting, no problem.' Sometimes I didn't believe it and worried it would be a bad move to not go to the ER.

Gah.

Anyway, my body lets me eat with minimal pain as of now...all no fat or very low fat (2% or less). I finally have some interest in working vs. huddling on the couch in a fetal position. I even think about exercise, but have no plans to actually engage in anything other than aerobic fantasies.

On the plus side, I'm all caught up on Burn Notice and discovered The Americans (omg you must watch, great show and the creator/writer is an ex-CIA agent which makes it extra awesome).

The goal going forward is a low fat, low carb diet in the hopes of holding myself together for the 'surgery' that may fix this. Not sure how that is going to work. So far, all I've come up with for menu ideas are things like chicken and veggie soup--cooled so I can scoop off the fat. Plus spinach smoothies. 2% cottage cheese and maybe some low fat lunch meat with fat free mayo, mustard and pickles.

I'll continue to juice vegetables to be sure I have lots of anti-inflammatory anti-oxidants. It definitely seems to have a positive effect when I take the time to do it (juicing is kind of a pain-in-the-ass in case you didn't know).

Beyond that, I'm a little stumped. I can probably still do taco salad with ground turkey, right? And fat free sour cream along with reduced fat cheese? Maybe?

Anyway, I'm searching for recipes today.

Going Down?

I know nothing about pancreatitis. I don't know its pattern. It's all new to me.

On one hand, I am worse.

On the other, I kinda, sorta, have less pain.

My entire right torso is involved now, front to back with extensions into the left side. It's not pain that bothers me as much as intense, uncomfortable pressure and heaviness.  Any serious pain has been fleeting, thank goodness.

I can feel my kidney on the right now too, like the heaviness is irritating it. My stomach is distended, I walk like a pregnant woman three weeks past due. There is shortness-of breath at times.

I seem to be losing my appetite. Maybe. We'll see about that one.

I am also having a hard time functioning. I'm very weak and tired. Today, I managed an appointment, a quick grocery store stop and the purchase of a new printer. I had to sit down a lot and, if my husband hadn't been driving and helping, I don't think I could've managed any of it.

For the remainder of the day I will be resting. Tomorrow I will go nowhere and do nothing.

If I make it through the weekend, I'll call the GI doc on Monday. Otherwise it'll be ER visit #2. Gah.

What a terrible out-of-the-blue surprise.  Asthma I understand. Adrenals I get. Pancreatitis makes no sense to me. I feel dumb.

Comments, Pediatrician Checking to Make Sure I'm Not a Drunk

Looks like I missed some comments? Weird. I will respond here.

COMMENT ONE:"I am SO sorry. How awful. Are you having an ERCP? Dreaded question....will steroids be part of the procedure or are you trying without? Was it a scope before that gave you a crisis after? I'm probably recalling incorrectly. Thinking of you lots. Hang in there."

I think it's an ERCP and an EUS or whatever. It's a down the hatch procedure, no actual incision, but, of course, me being me, I need general anesthesia. The GI I was combative with under Twilight must have left really explicit notes about 'do NOT use Twilight unless you like patient kung fu'. My current GI doc (same practice) was very clear that I would not have Twilight anesthesia, no way, no how. I have been banned.

I will stress dose. Yes it was a scope with general anesthesia that gave me problems before. I am doing SO much better on the adrenal front,but I don't want to play fast and loose. The downside of a steroid dose before surgery has a duration of maybe 6 hours compared to 3 months with an adrenal crisis. It's no contest.

Plus I could probably use the anti-inflammatory boost. I am not doing very well right now and I worry about having pancreatitis from the procedure itself. If I'm even well enough to have it at all. Things are really touchy right now.

COMMENT TWO: "I'm confused by a gap in the narrative. In our practice area, the ER would advise a follow up w/ primary care physician and/or a specialist in the area of concern. The specialist would never be available in the near future, so almost all get an appointment with us (The Family Physician) the same day they call. We translate and treat and make a plan for continuing care, including consultations w/surgeons or others who might relate to an unresolved abdominal pain/problem. It sounds like there is a hole in your system. (p.s. I reviewed this post on my BTR show last night- Dr Synonymous)"

ER advised follow up with a GI doc and I am an established patient with that specialty, so the runaround I got was really strange. I think the problem was the first receptionist I spoke to was a moron. Primary did things for me when I called them. They tried to help me circumvent stupidity from GI's administration, but they didn't want to see me, they wanted me with the GI, which I think was appropriate.

Sadly, I missed an appointment because of GI's logistic stupidity. I could have seen a gastro within three days of the ER visit instead of eight if they'd had their act together. My GI told me they are trying to get an appointment for their neighbor there and they can't get them in. It's bad.

Looking at my experience with the other hospital system, it just seems like the business side of the equation is controlling work flow in strange ways, rebuffing patients to everyone's detriment. I think too, the new push to force people to see primary--not call, but actually see--is an attempt to drive up profit as well as control scarce resources. Why earn money off one appointment when you can bill for two? It doesn't matter anymore if your insurance doesn't require a referral, now the hospitals do.

Poor communication and significant administrative barriers to care are the new norm in medicine in my experience. To the point where I wonder what is the merit of a specialist if they can only see you at 4 to 6 month intervals and never when you are acutely ill. The ER ends up compensating for these scheduling issues resulting in zero continuity of care in my opinion. The doctors who know me never see me when it counts.

Essentially my pulmonologist gives me inhaler prescriptions and never provides care for acute episodes. Sure, they'll see me for the aftermath, but can't be present for the jump off the cliff, which is when I really need their expertise.

Honestly, what do I need a pulmo for?  They're never around to intervene so I can stay out of the ER and hospital. Why can't I just go through primary for the prescriptions? Why establish with a specialist when they are never available when it really matters?

Yeah, I get to see them every month after a bad episode but that doesn't help me. It doesn't materially benefit my health at all. In fact, it's bad for me. I have to walk at a time when my lungs are raw. There are smokers everywhere, which is significant trigger for me. I've actually had pulmo appointments cause asthma attacks because of these factors. Then they argue with me about the HPA axis suppression and refuse to treat it. There's no added value.

It's messed up. Which is why, when the asthma is stable, I will only go to see the pulmo twice a year instead of their preferred 4 visits a year. It's a waste of time, mine and theirs. I do just enough to keep myself an active patient and that's it.

And if any of this makes no sense, well, I'm really not doing well. As of this morning, I think (hope and pray) I'll stay out of the hospital. Last night I wasn't so sure. I've had increasing pain and started alternating Advil and Tylenol to try and get ahead of it. I'm also on an all liquid diet as well as sleeping sitting up. I hope that's enough.

The other fun thing is my kiddo looks to have impetigo. It's going around at her school. So I kept her home and took her to the doctor on Thursday. Except, stupid me, I put Neosporin on the blister cluster and it resolved over night so she looked fantastic at the ped's office. As a result, nothing much came out of the visit and I continue to use the Neosporin on the blisters in the hopes that it'll resolve without another doctor's appointment.

The ped caught me picking at the tape residue from all the labwork I did this week at the GI's office--there's always adhesive gunk that just won't come off. She asked me about it and, again, stupid me, I told them I had pancreatitis. This triggered a series of awkward questions to determine 'is this mommy a drunk and should I call CPS?'  That was fun. I didn't realize the dynamic at play either until much later, so, in the moment, I was quite naive and didn't do much of anything to reassure the ped.

Then I started to wonder, does everyone just assume I'm a lush when they find out about the pancreatitis? Yikes!

For the record, I don't drink. I have literally never been drunk. Ever. I can produce witnesses if necessary.

The two sips of beer I've had in my life have made me want to instantly puke. In fact, in college, I took my first sip and then dry heaved while begging for Sprite. (You have never seen drunk 18-year-olds move so fast to a) get out of the way b)get me a Sprite so I didn't vomit.)

I hate the taste and my stomach doesn't want the stuff.  The second sip was a total accident, I thought it was my pop can, but no, it was Bud Light or some other equally horrid swill.

My husband stopped drinking a while back and so, for the last several years, we haven't even had alcohol in the house.  My palate is changing with age and I could see enjoying wine at some point, but, given the pancreatitis and a few raging alcoholics in my family providing up close and real life examples of why alcohol is bad, I think I'll just stay dry.

I Just Can't Stay Away (Pancreatitis)

Saw the GI doc and I'm having surgery in a few weeks. The diagnosis we're going with is Sphincter of Oddi Dysfunction.They're going to cauterize the sphincter so it can't spasm shut anymore.

If that is what is actually causing the problem. There's really no guarantee.

I really did have pancreatitis.The CT scan showed "stranding" (aka inflammation) and a cyst on my pancreas.

However, all my blood work was normal so the ER sent me home. No high triglycerides. No elevated enzymes from the pancreas or liver. Apparently, I had the mildest case of pancreatitis in history.

Yesterday, I ate some stupid shit (because I was starving, which is the state most associated with food stupidity) and have not done my pancreas any favors.It's throbbing angrily in my gut, making my pay for my indiscretion.

Why did I do something so stupid? Because I didn't think I really had pancreatitis. I mean, you read patient stories of their experiences and they aren't out and about living their lives, they're in the hospital in a fetal position from the pain. That wasn't me, but now I know better.

So, yeah, I need to pull back on food. A lot. Back to fluids and soft, bland foods until the surgery. I need to get my pancreas in good shape before the surgery to reduce my risk of the surgery causing pancreatitis.

Still haven't heard back from the one hospital system. I have a relative in that system who is an established patient and their calls aren't returned very often either. It's funny how they don't mention that in their multi-million dollar ad campaigns.

Reflections on Progress

Still no news on the GI front,but that's not what I wanted to talk about today.

This morning I got up at the crack of dawn, did the dishes, dressed and fed my kiddo, packed her lunch and made her laugh by singing an impromptu song about putting a 'moose' in her hair when she asked me to style it for her.

I drove her to school and came home feeling ready to work. I've been doing this for two weeks now.

In other words, I have energy as opposed to adrenal insufficiency.

Being able to get up and go in the morning has really been about the last thing to 'come back.' It really kicked in over the summer and I'm so grateful.

For a long time I couldn't get up in the morning. It didn't matter if I wanted to or not, my body just wasn't ready to be conscious. When I did get up, I often went back to bed.

There would even be times when I was gung ho about starting my day and  feeling pretty good only to be flat on my back again just an hour after going upright. The fatigue of HPA axis suppression/adrenal insufficiency was an anchor holding me down, holding me back.

I'm so glad it's gone. For real this time.

It wasn't depression as the trolls often liked to tell me. I've read Hyperbole and a Half who just recently posted a long comic on depression. I've seen clinical depression up close and personal in my family. I've never felt or behaved like that. I've never not wanted to be better. I've never not pushed and pushed myself to rise above the fatigue. Any inability to rise to the occasion was not a sign of mental illness.

The trolls scare me because they are out there practicing medicine and they don't know the difference between mental illness and adrenal problems.

I had hoped to step off this ride by now and am unhappy to find I'm still trapped on the medical merry-go-round by other issues. Basically, the only time I've been free of medicine were the years between 0 and 15.

Being sick can kill you even when there's a cure.