Friday, May 30, 2014

Feeling Weird

Trying to cut back on the Percocet and possibly not handling that so well. My stomach feels pretty good actually. It's not driving the need for pain medication.

It's the throbbing headache (caffeine withdrawal?) and this weird lower back pain that are no fun. The area over my right kidney is tender and feeling 'full.'  Advil and Tylenol aren't cutting it and I've used up all the Advil I can take in one day already.

So it looks like I'll be on Percocet part-time.

I need to sleep, but I can't seem to fall asleep. So I've been walking up and down the street in front of my house, soaking up sunshine, hoping movement might work out some of the kinks in my back. Maybe I've just been laying down too much and need to change up my posture.

On the upside, I've been eating more. 2 yogurts, 1 cup chicken rice soup (homemade) and 1 granola bar. Most calories I've had in days. And I added in some caffeinated tea for my poor head. So far so good. Nothing has exploded yet.

Thursday, May 29, 2014

Goodbye Gallbladder

My gallbladder and I have officially separated. There will be no reunion tour. Surgery was okay. The medical team was really responsive and attentive which was such a nice surprise. I explained I'd had a lot of asthma with last year's anesthesia so the anesthesiologist arranged for a pre-op nebulizer treatment and a different mix of gases that were more asthma friendly. Their efforts worked well and asthma was great in recovery. Stress dose was no problem.

Pain control was bad though.

I don't think I have the best brain for opiates. I just never seem to do well with them.

The second I was conscious, I was in pain and complaining about it. They gave me four doses of dialuid (sp?) and nothing. In fact, I became a little paranoid that the nurse wasn't actually giving me the medicine. But it's also possible I was in and out of consciousness and really didn't know what the hell was going on.

After that, I had 2 percocets which seemed to help.

But then, when I went into the next recovery room (it's like musical rooms for recovery there), the pain escalated.

Basically, I was having a massive GI charley horse. I assume it was the bile duct that was spasming. Very very painful.

So the nurse is trying to tell me it's gas pain.

And I'm just holding my head in my hands and crying. Am I going to be discharged from a procedure for the third time in a row with excruciating pain? What is with this gas pain bullshit! Stop already!

Finally, I managed to explain the pain was worse in a way that the nurse really heard me. It was difficult to talk because my throat was so sore and I was pretty out of it still.

They administered Demerol (sp?)  and it took the edge off. So I pushed to go home before it wore off because I didn't want to be bouncing around in the car in that much pain.

And the rest of the night was misery to the point where I wondered if something had gone wrong. So much pain despite so much medication seemed really odd to me. The next day was better. Kind of. I added in Advil which is what really makes the difference for me. The next step is to ditch the Percocet and see if I can make do with just alternating Advil and Tylenol.

I have had no gas pain in my shoulders, which is, apparently, so common with gallbladder surgery. 

I'm following the Adrenal Laws of Energy Consumption which goes something like.. space out everything you have to do and rest a lot between tasks. I'm supposed to attend a family event tonight. So my hair gets washed about 8 hours before.Then I nap. Then go get the clothes together. Another nap. Then get dressed. Another nap. And so on.

Oh, the preliminary report on gallbladder is it was a strawberry. Cholesterolosis of the gallbladder, which, from what I can tell in my drug addled state, is an abnormal but asymptomatic condition sometimes associated with gallstones and occasionally has some minor relationship to pancreatitis. At least that's what I got out of my hepped up on drugs reading so far.

I hope ditching the gallbladder ends up being helpful, but I have the sneaking suspicion that this Sphincter of Oddi stuff is more far reaching. I've been having trouble digesting food the last few weeks. As in, I could rinse it off and eat it again. I think there's more going on than just a wonky gallbladder.

Friday, May 23, 2014

Undeleting the Adrenal Asshats

Fair warning: Lots of swearing ahead.

I deleted the comment below yesterday, but then decided I wanted to address it.

This was the love note that was left on an old blog post:

"Stupid article by someone who knows nothing about having an adrenal crisis. An adrenal crisis is a life threatening condition that requires immediate dosing of solucortef or solumedrol to sustain life. When someone has an adrenal crisis veins collapse, blood pressure drops, brain damage occurs from lack of blood flow and death follows quickly"

I forgot to check the IP before I deleted it (I only have the comment because blogger emails me all comments), but typically, on comments like this, the IP points to a medical institution or university.

I wonder if this person ever sat down and corresponded with Addison and Cushing's patients like I have. Because I talked to a lot of patients and read a lot of textbooks and every study I could find and OUR SYMPTOMS DON'T MATCH THE FUCKING TEXTBOOKS/STUDIES.

Spend an hour of poking around on the internet and you can find patients who have Addison's, who without doubt have adrenal problems, and you will learn that THE SYMPTOMS DON'T MATCH THE FUCKING TEXTBOOKS/STUDIES. There's a lot of variation and none of it is documented.

And the death portion of the adrenal crisis CAN HAVE A BUILD UP. It doesn't have to come out of nowhere. There are things that precede it and those of us who pay attention know what they look like.

Now, would I have actually died from my adrenal crisis given that my adrenal insufficiency was pharmaceutically induced vs. being derived from surgery or an actual innate physiological defect? I don't know. And who's to say I don't have an innate physiological defect? My HPA Axis takes fucking years to get its shit together after being suppressed. This also DOES NOT MATCH THE FUCKING TEXTBOOKS/STUDIES.

But I'm not an experiment and I'm not interested in dying to prove those of you sitting on your medical high horses wrong. So I will take the steroids and I will call it an adrenal crisis, and you, Einstein commenter, can kiss my HPA axis.

Thursday, May 22, 2014

The Health Nuts Are Coming!

The whole gallbladder, sphincter of oddi dysfunction and pancreatitis trifecta o' fun is driving the health nuts in my life crazy.

You should do energy healing.

See my chiropracter.

Take these vitamins.

Do a detox.

I'm pretty open to alternative therapies. Long time readers will know that I've tried lots of off-the-books things in an attempt to improve my health. Some of them were very helpful, but there are limitations.

1. Alternative medicine or therapies tend to have mild effects that require constant input of money and procedures/pills to maintain. They are rarely curative in my experience. Helpful, yes. Worth trying? Yes. The cure? No, not so much. See also: Expensive.

2. Alternative medicine and therapies don't hold themselves to rigorous standards. Claims of being able to cure various ailments are made without blinking and without much scientific investigation (from what I've observed). There is science going on, but in day-to-day practice I heard a lot of unsubstantiated statements such as 'you won't have asthma anymore.'


Sorry, folks, I will still have asthma no matter how many Meyer's Cocktails I shoot into my veins. The expensive (and foul tasting) vitamins don't stop the asthma either. The IVs helped keep me out of the hospital when I had bronchitis, they were better and more effective than a nebulizer treatment but they didn't make me asthma free. If I could afford the IVs, I would do them before going to the ER in the future, but there's no insurance coverage and they're $300-$400 a pop. (Also, alternative docs don't work nights or weekends and shut their clinics down for their vacations with no back up.)

There are limits, but alternative medicine doesn't like to recognize them.What's so scary to me about this is the alternative doctors routinely tell patients to stop taking all their medicine. Why? Because they are going to be cured of all that ails them! My alternative doc wanted me to cold turkey my asthma meds. This is crazy because it would have removed steroids from my system when my HPA axis was already struggling, and also I have asthma. It's not going away. I ignored them and kept sucking on my inhalers.

Maybe in 1950, you could have done the IVs and the vitamins and the super special diet and achieved something close to a cure, but our standard of living is so different now, the food quality is not the same and the environment has things in it that didn't exist back then. How can you reset a person's health when the environment itself has not been reset? You can't. Not even with a vegan diet and fancy vitamins.

It's not that simple unless we're talking the stereotypical patient living on fast food and the only vegetable they touch is the pickle on their hamburger. Those people probably would notice a change, but I was already gluten free, juicing and making spinach smoothies so...

3. There are side effects and risks. Alternative medicine isn't necessarily any more or less benign than allopathic medicine. I tried licorice for the adrenal insufficiency, but had to stop because it jacked up my blood pressure.

 To me, cutting out my gallbladder is the neatest solution. It carries risks as well, I'm aware of that, but long term, I believe the outcome of surgery is better established than if I went to the chiropracter every week, took special vitamins every day etc... I do not want to end up in situation where I've gone all natural with my medical care only to have stones build up in my gallbladder resulting in a more serious case of pancreatitis than I've already had.

That being said, I would love to see more research on alternative methods. Particularly the IVs for asthma. There IS something valuable there, but it gets clouded by all the snakeoil charmers.

Thursday, May 15, 2014

I'm Not Crazy, but Medicine Makes Me Look Like I Am


I was given a bogus surgery date by an incompetent secretary.

Which was discovered at the presurgical appointment.

So despite multiple calls, at no time have I actually ever achieved the objective of scheduling my surgery. 100% failure rate on their end.


Naturally, my family has already spent money on plane tickets to come help out based on the bogus date. We made all our plans around this date. We've spent money. We don't get refunds.

Now I'm facing recovering with very little help and missing some important family events.

They're "sorry." 

I don't want sorry, I want KARMA.

If I have a psychotic break, it'll be because of this bullshit.

I am doing my best to make it so the secretary pays for this.

Again, are crazy psycho patients born that way or are they made that way by our 'world class medical care?'

I know my crazy isn't nature, it's nurture.