The Down After the Up

So Thursday was definitely a step down from Wednesday's high. Very tired and heavy limbed. Nausea hit in the afternoon and I had to go lie down until it passed. Appetite was off as well.

Basically, I'm only alive every other day. Any time I have the energy to exercise, I probably should just go sit down because I'm not really capable of withstanding the stress.

But I still count myself as improved simply by virtue of the fact that I even care about exercise. For a while, it was so far off my radar, it had the same probability as human life on Mars. Now I watch Youtube fitness videos and can't wait until I can do more.

I just don't know when my will and my health will finally merge.

This Post Makes No Sense, Read at Your Own Risk

I am off steroids as of today. The today and tomorrow in the previous post are a day off. I try to keep the time line straight as I write so things don't get confused but sometimes I mess it up. Sorry. (Although I hope your life is not hinging on my ability to keep the day things happen vs. the day things post straight.)

So...it's the usual woozy and about two blinks from falling asleep where I sit. We will see how I do without steroids. I think I actually weaned a few days early. Unfortunately, my sense of time has been weird since the ER. Half the time I'm lost in a fog.

For instance, the hubby has given up trying to talk to me today. I can register he said something but not follow him. All he gets from me is "What?" He repeats himself and I'm still "What?" So now he's outside communing with the leaf blower until my brain comes back online.

If I need to updose, I will.

I did want to update though before I crawl into bed for what I hope will be a restorative nap...

Saw the pcp. Found out my bp unit is broken, which is reassuring since it was starting to give 140/100 readings. The toddler drop kicked it the other day which likely broke it.

My usual whitecoat hypertension couldn't muster much of a response today. I attribute that to the lack of steroids.

I've lost six pounds since last week. Vomiting with a side of adrenal appetite suppression is actually a pretty effective diet. Too bad it's not more fun.

Appetite continues to be a problem. I work very hard to eat but many times breakfast is two hardboiled eggs and lunch is a piece of cheese that I force myself to eat. By dinner I usually have some appetite, but not enough to make up the missing calories.

It's not nausea, it's this weird anti-hunger. I want nothing to do with food. Nothing. I just can't eat sometimes and then I get stuck in a cycle of low blood sugar making me feel worse. I also fail to meal plan because I just don't care about food, which means we've been living on cheap takeout lately.

I'm thrilled to lose weight, believe me, especially after a year of nothing, but what the loss of appetite signifies is worrisome. It should even out though, with time, right?

And today, I went from the pcp directly to the nearest restaurant and ate heartily aka kind of stuffed my face. So that was good.

My PCP, well I don't want to jinx it, so just think of good things you might say about a doctor and yeah, that.

I gave them this fantastic paper I found on Exogenous Cushing's and subsequent insufficiency. I read it and it was like someone was writing about my life. I kept thinking 'that's me, that's exactly what happens.' I wish this paper had been around in the 90s, it would have saved me so much grief.

The PCP was happy to have the paper. I was quite nervous over how to give it to them without seeming like a know-it-all patient or a medical paper pimp, but they were glad to read it.

My plan from here,which I shared with the PCP, is to just have the endo put in some standing orders for am cortisol draws and we are going to be updosing for illness/surgery in the future. If I keep going downhill, I need something to test the HPA axis which the ACTH challenge does not do.

Oh and I lost one of my jobs from being sick. Which sucks. Although I was struggling with meet all my commitments anyway and likely would've had to let something go. My hope is to focus more on the writing which is actually kind of panning out, I just need to get more books out asap.

Okay I tried to make sense. Sorry if some of the paragraphs don't work. At least there aren't a bunch of typos, right?

They Know Jack About Adrenals

Sometimes people contact me looking for adrenal advice and I'm happy to share what little I know. One nugget I find myself passing on rather regularly is that your number one job is to stay out of the ER and away from doctors. It is not getting off the steroids. No, day-to-day the most important thing is to never need emergency care because you can not count on getting knowledgeable care.

So no tapering during high risk events like traveling or going to a party or right before your period. You taper when it is safe to taper, i.e. when you can stay home and do nothing. And you always carry steroids with you and don't hesitate to take them. Better to have too much for a day then be at the mercy of a hospital that may or may not know what to do with you.

They don't know jack about adrenals. The ignorance is pervasive.

Case in point, whenever the risk of stomach/bowel/esophageal puncture was brought up during endoscopy prep, I told them, "Make sure you give me steroids at that point."

To which the response has been confuzzled silence.

Yesterday, one doctor clearly had never heard the phrase HPA axis before. Didn't know, didn't care. In fact, they were kind of irritated because I was ruining their carefully prepared spiel on the risks of the procedure. Frankly, I wanted to smack them. It's fine not to know, but to not care that you don't know? Inexcusable.

Thank goodness for the very thorough anesthesiologist who printed out my history and read it. I'm not sure they knew what HPA axis meant, but the phrase 'adrenal insufficiency' in my diagnosis list made a huge difference.

Score for getting an endo on board in the same medical system where I seek most of my care.

Just like in real estate, location matters in medicine.

So that bought me an offer of steroids right there, right then. Which I refused. I had steroids at home. I wasn't in fear of an adrenal crisis (except for if they punctured my bowels in which case all bets would be off and gimme steroids stat) it's just that my system performance is not yet optimal. It was immensely reassuring though, to work with a physician who had some inkling of what this adrenal crapola was and how serious it could be.

I'm still shocked by how little doctors know about adrenals.

Today I took steroids in the hopes of minimizing the effects of yesterday. I don't want to take steroids at all, but I remember how long the recovery took after the last endoscopy. Besides the asthma has been at Defcon 5 since yesterday. I guess my lungs didn't like the anesthesia.

Fast 10

The toddler got sick just in time for her big birthday bash.

*bangs head on wall*

We are 0-4 on avoiding the birthday bugs.

And now I have whatever she had.

This bug is more insidious than the others I've danced with recently and is causing the adrenals to flake.

By the time I was using red lights as an excuse to nap, I figured I should take some steroids.

I'm starting at 10mg and it is slowly percolating through my system, lifting the fatigue monkey off my back.

It is amazing, still, how fast this all hits. The night before the sore throat started, I had massive crying-in-my-sleep charley horses in the arches of my feet. I even woke the hubby, which is a feat since he sleeps like a vampire at noon.

I couldn't figure out what was going on. Spasms in the small muscles of the feet and hands are classic signs of HPAA suppression, but I was fine, so WTF? Then the sore throat hit. My appetite died. Then I couldn't stay awake and ended up on the couch, too out of it to prevent the toddler from using my kneecap as a push-off point in her efforts to spin in the office chair.

I thought about moving several times, but just went to sleep instead.

Today I woke up and the fatigue was just bad news. I napped sitting up in the waiting room at PT. Based on that, I realized if I dropped the toddler off at preschool and went home, I would probably fall asleep and not be able to wake-up to go get her.

So 10 mg seemed like a good idea.

Deja Vu

Hey,it's Fall. We're going to the pumpkin patch tomorrow.

Except I'm sick.

Hey, I was sick last year.

This year, the toddler is sick too.

So. Much. Fun. that I can't quite find the right swear word for it.

The gallbladder/gut kept me most of the night and that was all the opening the germs needed.

My gut hurts, the adrenals are acting like they are somehow relevant, the asthma has been activated and my sinuses are full of gunk.

You wish you could have this much fun in just one body, don't you? Come on. Admit it.

Well, come hell or high water or whatever medical mayhem ensues, we are going to the pumpkin patch tomorrow.

So there.

Back in the Saddle

We are home.

I am pooped.

Hubby ended up in Urgent Care with swimmer's ear that has been remarkably resistant to treatment thus far.

Since he refuses to establish with a PCP, that means another Urgent Care visit probably tomorrow.

(No, that's not how I would do it, but the hubby is his own man.)

The asthma was good, except for when an improperly doused campfire smoldered through our window all night. I couldn't figure out why I was up hacking like a smoker and using the rescue inhaler, until we saw the smoke the next morning (and then I smelled it, but not before). Once the fire was truly out, everything settled down.

I used to be able to handle fires, but, a few years ago, my lungs made it clear those days were over. When the family gathers around the campfire, I sit inside with all the windows shut.

Today I am having some post-vacation adrenality. Burning flank pain and muscle cramps, particularly in the small muscles of my feet. The plan is to out-sleep it.

Meanwhile, I've been sending this important article to everyone I know:

Profit from Ecological Mayhem

“Energy “will give us serious and sustained problems” over the next 50 years as we make the transition from hydrocarbons — oil, coal, gas — to solar, wind, nuclear and other sources, but we’ll muddle through to a solution to Peak Oil and related challenges. Peak Everything Else will prove more intractable for humanity. Metals, for instance, “are entropy at work . . . from wonderful metal ores to scattered waste,” and scarcity and higher prices “will slowly increase forever,” but if we scrimp and recycle, we can make do for another century before tight constraint kicks in.

Agriculture is more worrisome. Local water shortages will cause “persistent irritation” — wars, famines. Of the three essential macro nutrient fertilizers, nitrogen is relatively plentiful and recoverable, but we’re running out of potassium and phosphorus, finite mined resources that are “necessary for all life.”

We are living this now. It's not some distant future, it's here today.

There is no economic recovery against this backdrop, only more poverty for more people…unless there are major innovations on multiple fronts...which I’m not holding my breath.

Updates of Varying Importance

Still don't know my test results.

Didn't take more steroids, but I feel the lack. Since I haven't exercised since Sunday, it's not so bad. Fatigue and muscle spasms is all.

However, I plan on exercising today. Just 20-ish minutes of squats with this dvd. (I did find a new Zumba class to try, but not until August.)

I have lost 2 more pounds and seem to be dropping 1/2 lb a day. In total I've lost about 10 lbs in the last 20 or so days, but I think most of that was water weight from the steroids.

I'm only counting weight loss from my last known weight unaffected by steroids. If that makes any sense. So I mark it as 4lbs lost.

The publisher passed on my novella. That's pretty much how it goes: Manuscript always requested, but never published. However, I am excited about self publishing and have been focusing on...

-establishing a twitter presence
-setting up a blog
-getting book covers together
-hiring an editor
-networking with readers and authors

Yesterday I did a lot and today I'm at loose ends. I want to finish the next novella but haven't been able to focus. I think that's the fatigue. I'm just not able to center when I'm tired and writing, even writing badly, is not a passive art.

5mg

Haven't heard back yet on the HIDA scan. Doc didn't call me on Friday. I may have missed a call from them Sat morning per the 'Restricted' flashing under missed calls on my cell phone, and no call backs, so I'm SOL until next week, after the holiday.

The 5 mg helped. Slowly. I suspect it was so slow because a)I maybe needed more than 5mg and b)I should've gone to bed for the day (yes, it was that bad) and instead I kept going.

Sitting outside in 90F heat is not really going to help you when your adrenal system has gone haywire. I supervised the toddler at the pool for 2 hours, laying on the concrete during each 15 minute swim break, scrabbling for every little bit of rest I could find.

Then we went swimming again later that day. Basically, I just plowed forward (well, not so much plowed as lurched unevenly). Went to bed early. Slept in a wee bit today. Got up and felt like I was trying to move through Jello, but decided to forgo any more steroids.

Sat morning was rough, but I caught the low blood sugar early, fed it a Godiva truffle (at the mall), and spent the day shopping with my parental unit. It was mildly embarrassing to insist that we stop to eat at 2pm as all I'd had was a flax/almond muffin and that truffle and the blood sugar was NOT happy about it.

Everyone else that has a body that works, they just go without worry of interference. I have to cater to the stupid things my physiology does and it can be awkward because no one understands. I had to get kind of forceful about "I need to eat. I'm going to be sick if I don't eat" and people looked at me weird when I said it. I wanted to melt into the floor.

The good news? I was hungry today. Really hungry. The Jello fog lifted by noon and I felt pretty okay. Like it was a good decision to not take steroids again.

With a Little Help from My Pills

Took 5mg steroids today because...

-exhausted
-weak
-no appetite for the last several days (ate only one meal yesterday and am forcing myself to eat)
-loopy
-BP trending low but not bottoming out per se, just feels like it is
-irritable
-muscle cramps
-HIDA scan was way stressful

Other possible solutions to explore include...

-Tinkering with BP med dose or discontinuing altogether
-Putting more carbs in low carb
-Staying far, far away from medical procedures of any kind
-Never seeing doctors again because they order said medical procedures
-Stop complaining about anything because that means I see doctors who order said medical procedures

Still can't say yet if the 5mg helped but I'm waiting for it to kick in aaaaany second now.

I also hit my head harder than anyone should this morning, which is known as NOT HELPING. We have a small house and the concession we made to have a dining room, (teeny) family room and (tiny) play room on the first floor was that we shoved our bed in the dormer nook upstairs, which has a vicious widow's peak.

Yes, we sleep in a hallway that occasionally attacks our skulls.

Note to self: Never jump out of bed.

The HIDA scan results are in. Just waiting for the doc to review them and call me back. Still time to place your bets. Yay or nay on gallbladder removal? Since I seem to specialize in symptoms that don't test well, I say nay. Also, I have learned that GERD meds totally jack up the gallbladder.

Now, if you'll excuse me, I'm going to self medicate with chocolate and then take something for my aching head.

How I Feel Exactly

Sometimes I spend time looking at the search results that bring people to this blog and yesterday I ended up in a forum reading this:

"An addisonian crisis will leave you weak, confused, unsteady on your feet and generally clumsy, it'll cause tremors (hand shakes), you'll pee like a maniac, be less able to speak clearly and articulately, etc. In a lot of ways you'll look like you're drunk to the people around you." (Source.)

It may have been an adrenal crisis for them, but this is how I feel a lot of the time and I would not say I'm in crisis. However, this pretty much sums up how I feel. Suddenly, reading that, I don't feel so alone.

The clumsiness is HUGE and it is something other adrenal patients have mentioned. I drop things a lot, especially with this last taper.

The yogurt at the grocery store? It flew like 10 feet down the aisle, cracked open and left a long white skid mark on the floor. Just from my flubbery fingers. I'm sure the people who saw me thought I was trying to do some kind of weird food bowling. It probably looked like I did it on purpose too.

I've lost count of how many times I go to tip the bottle to shake a vitamin into my hand only to end up throwing them all on the floor. Sometimes I end up dropping the bottle too. I can't pour water or juice without missing the cup. So glad the toddler is not a baby, I would probably drop her too.

Just to show I'm not inherently clumsy, prior to the HPA axis suppression, the toddler when she was 4 months old fell off the ped exam table. Out of three people in the room, I was the only one able to move fast enough and catch her head in my hand just before she hit the floor and set her upright back on the table. I moved supehero fast that day. Total miracle mom-lifts-car-off-child type save. My once nationally ranked (in his country) athlete husband? Hadn't even moved. The ped just gaped and she was closest to the baby!

To do that now? No way. I'm on a time delay.

I also have bruises up and down my legs because I'm always bumping into things. Always. If there's something I can ram my shin into, you can bet I will. It's like there's a gravitational pull.

The clumsiness drives me nuts. Very annoying.

And the drunk thing. YES. Totally. Except I've never been drunk (alcohol tastes like troll ass to me) so I go with loopy when talking about it.

The sounding like a drunk is a huge problem. I have such a hard time communicating at times. I had a real j-o-b phone screen interview this past week and, in practicing what I was going to say, I could not string words together. I couldn't come up with words I was looking for. Sentences were stilted and full of don't-hire-this-nut awkwardness. Thankfully, my pre-interview nerves must've prompted an adrenaline surge and I did fine in the actual interview.

Trying to write when I'm in this state? Is very difficult. Compared to my skills prior to HPAA suppression and now? Very noticeable difference. I have to work twice as hard and edit more than I ever did (note, no editing or hard work on this blog, not that you hadn't already noticed).

The only thing I don't usually get is the peeing a lot. I drink a lot of water so it's hard to not pee a lot just normally.

One interesting data point from that forum, I'm starting to find more people reporting vomiting as a steroid withdrawal symptom. In the past, I had only ever found reports of vomiting associated with adrenal crisis.

Thankfully, as far as I can tell, I don't vomit with steroid withdrawal. Although I do kind of look back on that vomiting episode a few weeks ago and wonder. The GERD/Gallbladder thing is still the most likely suspect though and it finally seems to be improving (maybe).

I don't know. None of this isn't stuff I haven't blogged about before. It's not news, but that one little paragraph just resonated so strongly with me I had to bore you with a post on it.

More Dog Tales and Adrenal Crapola

Had those 5 cavities filled today. Shoulda updosed. Face planted into bed the second I got home. My head hurts.

So two days good and now two days bad.

Maybe I should do that blood work after all.

But I keep thinking, I'm on a subphysiologic dose, I should be fiiiine, right? But this isn't steroid withdrawal either. So WTF?

So the dogs, which are much more entertaining than me. First the yellow lab unplugged the freezer with his butt. We all remember this, right?

Then the hubby put all the defrosted meat garbage (some of it was too far gone to save) in a place where the dogs could get it.

I told him to move the garbage.

He did not.

So the dogs got into it.

Duh.

Next day, the yellow lab is horking up balls of aluminum foil on the dining room carpet.

Doh.

Tell hubby to move garbage again.

He doesn't. Because why? I don't know. It's some male genetic malfunction.

Dogs therefore obliterate a bag of mowed grass.

Turns out, they don't like grass. Not like that. So they just spread it around and look at me like 'bitch please' as if I screwed up their food order.

Then they tore into another bag because the hubby lets them loose in the yard with the garbage.

By this point, the hubby sees the light and moves the damn garbage bags.

Finally.

But he makes a mistake. He thinks he moved all the garbage and left the recycling in place (which the dogs won't touch).

Except he moved the recycling and left the garbage.

So for the third time in the same day, the dogs are in the garbage.

We finally broke out the hydrogen peroxide and mixed it with chicken broth to make them puke it up.

Moral of the story? We are bad with garbage. Also, dogs will eat aluminum foil if it contains enough rotting meat, who knew?

Why didn't I just move the garbage? I kept thinking the hubby took care of it, only to find out, after the fact, that no, it had not been moved.

The bag of grass was on me, but they had to pick at it through a fence. I thought it was safe. I was wrong. Next time? I will move it all myself, cramping muscles and all.

Oh, the dogs are fine. Feeling a bit betrayed by that tricksy chicken broth, but fine.

I hope this was entertaining. Not sure if my energy is good enough to do the story justice. The stupidity was painfully funny to me.

Stranded

Note that I am all a-googly-eyed right now. Not sure why, but it's like I don't live in the real world. No, I'm in an alternate reality where cognition synapses as the speed of dead snails.

It's easier to make sense when writing, but I spin circles in conversation. On the off chance, I'm not as together as I think, please excuse any mental lapses. I don't feel like I'm at full mental capacity here.

Yesterday a 20 minute nap turned the world right side up....until I had a minor asthma attack which put me back to feeling-like-roadkill status. Hopefully I can catch a cat nap later.

Anyway, now that I've explained I'm out of mind, we have about 500 feet of snow with a school superintendent who is, I guess, party Husky and school was not canceled.

Me being me, thought, 'well, if the Super hasn't canceled school it must be fiiiiiiiine."

I am a moron.

Who can't drive in snow.

I toughed it out and got the toddler to p-school only to realize there was no point in going back home because I would just have to turn around and come back.

We live 3 miles from pschool. It took 40 minutes to get there today.

Mostly because rush hour was so backed up that the volume on the side roads was bumper-to-bumper insane, complete with random u-turns of people giving up and going home.

So I decided to stay at preschool. Only I hadn't eaten yet and I hadn't brought my purse which has an emergency stash of meds and food. My split dose is supposed to be taken around 10:30. Preschool ends at 11.

Please smack me. Repeatedly.

Again, I am a moron.

Moron. Moron. Moron.

Walking in 8" of snow to a gas station to buy a breakfast of honey roasted peanuts because to drive would take 20 minutes? Not a lot of fun.

Other parents stayed too. One was a nurse (I found out later) and I was feeling so high, I warned them I was a bit light headed as I was worried I wasn't making any sense.

"Is your blood sugar low?"

"Maybe," I said pulling out some M&M I'd bought at the gas station.

"Are you diabetic?"

Answering no I explained, briefly, about my medical f*ckuppery.

And got yet another doctor recommendation back.

Which I shrugged off. How many times have I been told now that so and so is a great doctor? Too many times to count.

The truth remains that unless you exhibit signs and symptoms and test results that are within the realm of a doctor's direct experience, you are screwed. Doctors only seem to be as good as what they know. There is a disheartening inability to extrapolate from their education and it seems they all skipped the chapter as well as the lecture and maybe even the test on adrenal glands.

The thing about me is I am an extrapolator. Not necessarily with medical stuff, but I can take something and abstract it to someplace else intellectually and that process is relatively uniform regardless of the topic. It is incredibly frustrating to me that I continually see physicians who can't stretch their thinking and yet subscribe to this idea that they know everything.

There's more than one kind of stranded.

Ice Cream with a Side of Lube

Saw the endo today.

Lost 5 more lbs of what, I assume, is the rest of my vacation weight. So 11 lbs lost since the end of May.

3.33 lbs per month.

Kinda slow.

But still 5lbs down.

Aaaaand after liberal application of lube for the ultrasound, no growth on the thyroid nodules!!!!

When I got home (after a 5 hour office visit) I celebrated with Ben & Jerry's ice cream.

And promptly got food poisoning. Actually, maybe not food poisoning so much as the pill does weird things to my gut and makes me sick every once in a while. I have zero digestive problems off the pill, but on it is another story entirely.

But damnit I am not throwing up B&J.

And I didn't.

Endo ordered some blood work to check the thyroid and some other stuff that I lost track of. We are not testing the adrenals because there's no point--I'm a little foggy on the logic of this--but essentially I'm going to get sick with preschool germs and end up on steroids anyway and we can't test if I keep taking steroids so why bother? I think I have that right in which case I'm a little confused about the whole thing. I mean, I sort of get it, but how/when do we try to figure out if I have a permanent adrenal thing going?

Anyway, I kind of like my endo but I'm still not sure they're the right doc for me. I feel that they listen really well. Even if they aren't responding to everything I'm bringing up, I feel like I'm heard. They are very respectful and took time to show me today's ultrasound in detail complete with thyroid model, but aren't always answering my questions. I'm not sure if my questions are getting lost in the flow of the appointment or if I'm just being side-stepped.

I was also really tired today, so maybe I was speaking in tongues.