The Latest Flavor

The antibiotic is working. The drug-induced diarrhea is brewing. And I firmly believe I stayed out of the ER and hospital because of all the alternative woo-woo stuff.

Even if it does all taste like sun-dried bull testicles with a delicate and flavorful cat vomit crust.

The clinic had some 'bars' for sale that included greens powder.

"Have you tried these?" I asked, wondering if it was indeed possible to make greens powder palatable.

"Oh yeah, they're great."

"Which one would you recommend?"

"The lemon is really lemony, but good. I like this other one best."

So I selected the bar the staff said they liked.

Ha!

It tasted like ass.

I didn't even chew it, just spit it back out.

To date, there is no known way to make this stuff not taste like ass.

The search continues.

(I really question whether the people who make this stuff even like food or if they've ever had any good food, like ever?)

Of course, my daughter, the sugar fiend, spotted the bar when I got home and begged daddy to "split it with me please, please, please." My husband had some inkling that the bar was not going to be great, but gave it to her anyway.

Predictably, she hated it.

It was rather comical watching her expression change as she realized she had not scored a free cookie, but rather something that tasted like ass. She spit it out right quick.

I was also given some licorice syrup on Tuesday. They set the ginormous bottle on the counter and my eyes went wide as I murmured "And how bad is this going to taste?"

For the record, better than greens powder, but still not great. No wonder they make candy with it, you need a ton of sugar to make it go down.

For those who don't know, licorice has some impact on adrenal function (and causes circulatory issues which I suspect I'll be vulnerable to, but we'll deal with that when it happens). I am interested to see how well it works for me.

Just Right

Penelope asked about secondary adrenal insufficiency and my recovery. My rather garbled response is below.

There are several kinds of adrenal insufficiency. You'll most commonly hear about Primary and Secondary. What is the difference?

Primary is pretty much a complete failure of the adrenal glands. So your brain is doing its job, sending all the right signals, but the adrenals are asleep at the wheel and unresponsive.

In Secondary, the system failure is in the brain. I think medicine does not address the fact that decline can be slow and gradual with symptoms appearing long before tests will reveal anything useful. You can retain some functionality of the HPA axis with Secondary and medicine has no freaking clue what to do about that craziness, so it ignores the problem.

Medicine is all about total failure when it comes to adrenal glands. 99% of the time medicine misses the nuances of adrenal problems and the tests are not cutting edge, which does not help. The textbooks are lacking, which leads me to think the hands-on training is pretty lackluster too.

The end result of primary and secondary is pretty much the same, not enough cortisol in the system. Treatment is roughly the same, but Secondary doesn't always have the blood pressure issues of Primary. With Secondary it is good to image the brain to look for tumors or other bad actors--unless yours is steroid induced.

The main cause of Secondary is steroid use and affects something like 6 million people (US). For comparison, GERD affects about 7 million people (in the US) and look at all the meds and commercials for them! Adrenals get nothing! That is insane!

I do not know if I will ever fully recover. I would expect, at a minimum, that I will always need to stress dose for surgery. Right now I still need to stress dose for exercise and illness. I could get worse, I could get better. Hell if I know.

I have corresponded with someone who has Secondary but also retains some functionality and I feel very similar to them. (Except they test better.) They struggle to know how much steroid to take because their system isn't completely dead. I'm on that tightrope now.

I hope that answers the question and that I remembered everything right. I like the Merck Manual for the basics and would suggest you start your reading there.

As for me...

1. Did not exercise today so I wouldn't have to take steroids. That is just not cool. I'm trying to commit to stress dosing for a month and then see where I'm at, but sometimes it's just easier not to exercise.

2.5 mg is not enough. I need 5mg when I exercise, so at least I know that much now, but I keep resisting the whole thing, like that's going to help.

2.I got a (small) consulting gig. Holy shit. My competence remains to be seen and I am nervous as hell.

3.I wrote 10,000 words in 4 days which is pretty cool considering how busy I've been. Unfortunately, the story is no longer streaming through my brain, now it's work.

4.Some business-y post I wrote went viral and I got mentioned on a huge blog that I majorly respect. Sadly, I am probably the only person I know who can go viral in such a way that it sells no books.

5. We got free entry and free pizza due to the puke and play incident I bitched about.

6.The zumba people still have not refunded my money. I will SO fry their asses via a Better Business Bureau complaint.

What Do I Need?

Trying to sort out what I actually need for the upcoming endo appointment.

First, check out this case study of a soccer fanatic with Addison's.

"Previously she had enjoyed excellent health and participated in high intensity training for extended periods. Within three months even leisurely walks on flat terrain resulted in severe fatigue and intermittent chest discomfort."

The exercise issues described resonate strongly with my situation. Only I don't test as well as that patient did--they were pretty easy to diagnose.

My feeling is there's something wrong with the HPA axis but, while stress dosing is vital, I probably don't need steroids everyday. Whether I will ever fully recover remains to be seen--I tend to think I'm developing permanent Secondary Adrenal Insufficiency due to the prolonged and varied insults to my system. As I've stated before, this has been the most severe and dangerous suppression yet.

It has been different in many ways:

-Diagnosis and treatment was delayed, I believe, almost fatally. I truly thought Medicine was going to kill me last year (2010).

-Compounding problems. While I was suppressed and without treatment or diagnosis, I lost a lot of blood, one point shy of anemia, and had the stomach flu. All without a properly functional stress response.

-Had an adrenal crisis.

-I have not been able to stay off steroids for any length of time.

-Energy for exercise has been an ongoing issue that is not resolving.

My goals from this point are:

1. To stress dose when appropriate, possibly even including exercise.

2. Cross fingers things resolve and the need for steroids becomes obsolete.

3.If things don't improve or get worse, an ITT or OMT would be a good idea but the odds are pretty low of a physician actually ordering those tests, which leaves me hanging. I am not sure how to proceed on this point.

I suppose the good thing is, if this is developing Secondary AI, it will eventually be bad enough to ace all the tests that come before an ITT. I just need to survive until that point.

Sparkler

I didn't make it far after last night's post.

Went to tuck the toddler in for the night and found myself panting my way through Fancy Nancy (the latest toddler obsession. Also, great girlie girl books if you have one of those, which I do. They are packed with vocabulary so also educational.)

It was not asthma. Nothing like it. Just weird shortness of breath.

And as I said the last good night, a flare of electric heat spasmed over my kidneys. The mental image it imparted was one of a 4th of July sparkler. Fizzing, spitting heat, whipping across my back.

I really do believe it's possible to literally burn out your adrenal glands. Mine seem to spontaneously combust on a regular schedule. It continues to be one of the oddest sensations my body has ever produced.

Between the breathlessness and intensified adrenal discomfort, I didn't want to wait to see what was next.

So I took 2 mg. Perked up about an hour later and then started flagging again. Decided to ignore it and just take 5mg this morning. Which I did.

Based on past experience, this should be enough to turn it all around. But the adrenal pain is continuing and I'm not sure what to make of that.

I would be frustrated and angry, but I'm too wiped to get all that worked up about it. Here's hoping I'm up for a good rant sooner as opposed to later.

Fighting About the Other Woman

So I think we all hit our breaking point yesterday.

The hubby feels under-appreciated and overworked.

I feel under-appreciated and overworked.

There were tit-for-tat exchanges to establish who did more, as if that was relevant. Well I did this and you did nothing... But I did this and you did nothing...

Illness is not a good mistress.

The main thing is, I've asked the hubby to be home right now. To not go off gallivanting as is his wont because he's actually going to be out-of-town for a week soon--for business and pleasure. This leaves me at home as a single parent just when I'm due to stop prednisone for a second time. So I want him home to lean on so I can store up reserves for that week.

The hubby has lots of active hobbies that take him all over the place after work. I am a homebody who works at home, which results in an inequitable distribution of who does the most recalcitrant toddler wrangling (me).

Truthfully, I need to do a better job at getting out of the house and develop some external hobbies of my own, but I literally can't hack anything more than I'm doing right now. (But when I feel better? I'm totally going to check into a hotel for a weekend. By myself. So nyah-nyah.)

Anyway, it was ugly last night, but we are repairing the damage today. My frustration is, it is so damn difficult to explain how pervasive chronic illness is to someone who is never sick.

Just because I'm functioning doesn't mean I feel well and it doesn't mean I don't need help. What it means is that I'm simply used to a baseline of feeling like shit and pushing through--I've learned to function in spite of illness. Hubby hasn't built up a tolerance to illness, which is why he was pretty much babied through the stomach flu while I puked and toddler wrangled at the same time--all with malfunctioning adrenal glands.

Just because I did that, doesn't mean I good to go. I'm not. I need rest. I need to recoup. In fact, I probably need someone to tell me to go take a nap because I am much more likely to push and push and push against my limits.

Right now, the hubby just can't go off and have a good time and leave it all on my shoulders. When I'm better, fine, yes, he can go and play hockey until he loses all his teeth, I don't care, but until then, come home and help out.



Disclaimer: Hubby is NOT a slacker. No, no, no. He helps...when he's home. It's just that he's a social butterfly and doesn't stop to think before he says yes to five different things. I end up being the (unintentional) meanie who points out all the double booking and scheduling conflicts created by his acceptance of various invitations and saying 'hey, dude, what about your family?'

Time management and organization are just not his strengths and he would be the first to (grudgingly) admit that. It's an ongoing dynamic that extends back to when we started dating. Sometimes we're better about dealing with it than others. Last night was not one of the better moments.

Member of the 1% Club Several Times Over --Where's My Prize?

Saw the primary doc. They are listening. I can see the wheels turning and I think I'm being taken seriously.

They asked if I'm exercising. Everyone asks this. Somehow my description of the fatigue tends not to compute the first time around.

I snorted at the question. "This is it. This appointment is ALL I will do today. From here it's all nap and resting. I haven't exercised in 2+ weeks."

Although I did end up taking the toddler out for a burger and to the playground. It about killed me, but I am committed to not sucking the life out of my daughter's childhood. Then I came home and threw out more food I am too tired to cook and the hubby brought home take out. Again. After which, I took a loooooong nap.

The other exchange, has me kind of kicking myself. Look, I have read and read and read EVERYTHING I can find on adrenal crap. Studies.Textbooks. Patient experiences.

EVERYTHING. I am the Queen of Adrenal Factoids at this point. Where do I audition for Jeopardy: The Patient Edition?

When the primary doc was confuzzled on why I would be prescribed prednisone as it doesn't contain the mineralocorticoids (hope I spelled that right), without thinking, I blurted out 'This is probably secondary adrenal insufficiency.' *face palm*

See, you don't need the mineralocorticoids if it's secondary adrenal insufficiency because, supposedly that capability is still intact in the adrenal glands. (On a side note, I also read that because of this it would be very very rare to have an acute adrenal crisis, but I would like to see more than one source on that before I take it as gospel.)

(And of course being a lowly stoopid patient, I could have all this wrong.)

I liked that they questioned it. That they were thinking primary adrenal insufficiency, because I do think I need some testing--whether it's damage from sustained prednisone use from the ages of 15 through 30, or the fact that the first time my adernals tanked it went undiagnosed or other high medical weirdness, something certainly seems off. The endo is planning to do that testing as far as I understand.

Anyway, I wanted to kick myself for saying anything at all. Fortunately, I don't think they took it the wrong way. They actually apologized for me having to go through all of this, which was a real kindness, I thought. I really appreciated it because my life has SUCKED lately--the bright spots have been hard to find. They also said I am that 1% who has issues with suppression.

As if I've never been an outlier before. Puhleeze. As far as outliers go, my health is a total 'slore'* I should get 1% tattooed somewhere. Maybe even trademark it as my brand. It seems to be my personal percentage.

The goal at this point is to get the primary doc all copies of all paperwork--past, present, future--related to the adrenal stuff. I am all for that. The more doctors who know this about me, the better. I am learning the painful lesson of having just ONE doctor know serious medical stuff about me. When they left town, I was left high and dry.

I won't make that mistake again.

*Slore = slut + whore. Courtesy of Olympic skater Johnny whatshisname who recently described Olympic gold medalist Evan whatshisname thusly. The word has since stuck in my brain.