Data Dump

I slept in my own bed last night! I'm giddy with delight!

I still have some discomfort, but not enough to force me onto the couch. I can even lay on my right side...for a little bit at least.

I'm having flashbacks to the ERCP where I finally started feeling better and we fucked it all up with the ERCP.

Am I going to make things worse with surgery?

Yes. Probably. That's what my gut thinks. Ugh.

***

(By the way, if you notice any missing gs, it's my keyboard. I'm not anti-g. The key doesn't work consistently and I don't always catch it. It's a new netbook, too. Naturally.)

***

I saw the specialist about my bladder and was thrilled to learn that the incontinence is fixable. I had NO idea and I never pursued it because all I knew about incontinence came from those lawsuit commercials about mesh.

But I'm learning now! And I'm excited. I've been just living with it.

At this rate, there will be nothing I haven't personally experienced. I figure I have to be at least a quarter of the way through the different medical specialties.

***

I'm still not eating a lot. My appetite is gone. I don't feel hunger normally. I can only tell I'm hungry from the headache and increasing fatigue. I don't get hunger pains.

I go a few days without eating much and then have a day or two of bigger meals.

Despite not eating, my weight hasn't budged. I'm pretty sure my body is violating the laws of thermodynamics now.

My whole system is off. It's gone dark and deadly quiet. Things are not normal.

My lower abdomen hurts when I hit a pothole which is atypical. I'm a little concerned about diverticulitis starting up. It hurts enough to force an involuntary yip out of me.

I'm keeping a wary, squinty eye on it. Nothing else I can do.

***

All the doctors have been amazing. I'm finally looped into a good network of people. Plus, having a concrete, unusual sort of 'novelty' medical problem makes it easier vs. being the vague symptom patient they can't connect with or justify doing anything for.

The only worry I have is the surgeon.

Ahhhh. So nervous about this surgery.

Did I tell you, they didn't want to stress dose me? Ahhhh. So much anxiety over that. I've only had problems with surgery when they didn't stress dose me.

Remember that? It's somewhere here on this blog.

RECAP

Endocrinologist:  'Your ACTH challenge was fiiiine. You don't need to stress dose.'

ER Doctor 8 hours after I was discharged from outpatient surgery: 'We think you're having an adrenal crisis and need steroids.'

Me: 'No shit Sherlock.'

/END RECAP

However, the pre-surg nurse told me the anesthesiologist makes that decision, and since I've been on steroids recently, they will most likely stress dose me.

Not to mention my asthma is flared a bit from the bug I caught in October, and it's persisted. If they don't stress dose me, the background asthma I have now is probably going to flare bigger with anesthesia and they'll have to do something anyway.

Also, I think the upper, tippy top reaches of my system are still not quite right. Those of you who think patients are loons who shouldn't be trusted with spoons are going to roll your eyes at this, but I had a weird episode this past summer.

We went on vacation and I wilted like a flower hit by a super nuke. Just unable to function. Couldn't stay awake even.

Yes, we were in a major city with 90+ degree hit and walking ten+ miles a day. But I'd slept well. Ate well. Hydrated with clear pee. No signs of heat exhaustion or anything. While my feet hurt, my body wasn't sore otherwise. I was conditioned enough for the activity level.

And on day 2, we did a low key air conditioned boat tour, but I was still falling apart, even though I was absolutely fascinated by the tour. The fatigue was clobbering me like Negan's baseball bat.

I couldn't even keep my eyes open. I kept catching myself falling asleep. This was not an 'oh I feel tired' Victorian hysteric kind of a thing, I was literally fighting to stay awake which is NOT normal for me.

I did my usual tricks of salt, sugar, water aaaaand nothing.

The boat tour ended and I tried a big meal. Maybe I needed more calories--my body always seems to be unable to find the fat it has stored and liquidate it. Instead of perking up with food, I put my head down on the table, desperate to sleep.

On a highly anticipated family trip.

After 8 hours of sleep.

And food.

And not even walking in the heat that day.

That is NOT me.

It felt really adrenal. The will was there, but there was no energy to support it. I couldn't GO.

It got to the point where I told my family to go on without me. I would just sit in the food court and wait for them.

I just couldn't get to okay. No matter what I did.

Somehow I muddled through, and the next day, I tried 10mg of prednisone. The asthma was pissy from everyone smoking outside and the smoke exposure was continuous, so I thought it wasn't the worst idea to head that off a bit. And if this was adrenal, it would fix it.

Which it did. I was suddenly perfectly normal. I had no problem keeping up. I had all the GO I needed and my lungs calmed down.

I mean, I don't know. It was weird though, and it makes me wonder about how well the HPA Axis is doing.

And if someone is against stress dosing, it just makes me very nervous.

I suppose you could make the argument that the drag on my system was the asthma, but it wasn't badly flared yet. I was more trying to head it off and keep it from getting worse. I figured, if it was cranky after one day in the city, that days 2, 3 and 4 were just going to compound things.

I don't know. I don't even know if an ACTH challenge would show anything. I do know I do great with stress dosing and always heal well. I know I don't do well without it. That's all I can tell you.

You either think the patient's voice matters or you don't.