Medical Mojave

Monday Report

2012-02-13T05:13:00.001-08:00

Friday sucked. The most adrenal crapola day I've had yet. Not sure what the trigger was, I just sort of slowly deflated to that point. I also had those low immune symptoms--sore throat, feeling like I'm coming down with a cold--but I couldn't tell you why.

Toddler is now 46 1/2" which is completely off the growth chart (although I have seen kids taller). She's also been going through a rather unpleasant phase. Lots of bad attitude. We signed her up for a karate class, which we bartered our services as slaves to cover the tuition. The instructor is going to be so good for the toddler. Boundaries. Respect. We have those at home, as I'm actually kind of strict, but this is a whole new level and it's great to have help.

Also, she'll never have the right physique for dance, but martial arts might be a good fit for her long term. We'll see. I watch her and I can picture her at competitions when she's older. Assuming she ever graduates from PT.

This blog post has no plot. Sorry. I used all my plot up last week.

Wrote 20k words. This week is focused on editing to get two stories up and out into the world. I also worked some promo and hit 12 on the Hot New Releases list on Amazon as well as their top 100 list, that was pretty cool, albeit short lived.

I have been working very hard to pull this together. It is going very well, knock on wood, kill a chicken and do a voodoo ritual naked under a full moon etc.... The downside is I have no time for anything else and it's the kind of work that sucks you in. I don't remember much about Sunday other than the stories I worked on, for example. The rest of the world faded away--it's like that when I read too.

Then when I go to bed, I can't shut off my brain. Even cheesy, lowest of the low genre writing is like working a mind twister 24/7. So I talk to the hubby, but he just wants to sleep. Last night he finally suggested if I was so wired that I go downstairs and work on his research paper for school. Anyway, it's all consuming. I hope it's not the reason the adrenals are tanking.

Interestingly enough, on Friday when I felt so bad, I couldn't work. I had to take the day off. Which is why I hate being adrenal, it eats your brain up.

Exercise has been in and out. I got in one workout last week and then took it easy after that as I didn't feel well. Not sure how it will manifest in my life this week.

Not Bad, But Could've Been Better

2012-02-09T13:12:00.000-08:00

Today was a low energy day. Did Zumba yesterday and then climbed 130 stairs despite my knee's loud, clicking protests. (By the way, the knee is my other souvenir from that asthma hospitalization. I guess it was a two-for-one deal. Messed up adrenals and a bum knee due to deconditioning.)

Exercise resulted in a wave of adrenal fatigue and weakness. Again, nowhere near strong enough to take me out or necessitate steroids, but I was annoyed.

It didn't help that I got up at 6:30 am and started writing. Hubby's morning toilette woke me up and I couldn't go back to sleep so...I wrote. I was awake and pretty alert on only 6 hours of sleep, which is kind of new. There were delusions of doing that everyday, but the Zumba induced fatigue squashed that fantasy. Maybe in a couple more months.

So the day went. I was kind of run down from the adrenals and the early start, but I did a lot anyway. Went to a movie by myself at night. Hubby bugs me about 'getting out of the house' when I whine about never getting a break from being the primary caregiver. I've been telling him for two years now, that I don't have the energy to go out. If I did, I would.

As for today, I'm tired out. Normally I would exercise again today, but instead I am taking it easy. Again, nowhere near the intensity it's been, it's just that the malingering Groundhog's Day nature of this adrenal crap is wearing thin.

Other changes...

My body is hosting a Welcome Home party for the PCOS which is raging at full strength. Acne everywhere. Weird ass PCOS hair. Bloating. Sugar cravings. It's very obvious to me that I've had ongoing never-ending adrenal issues even if I and everyone else thought I was 'cured.' The adrenals clearly dominated over the PCOS.

The PCOS kind of ruins my adrenal recovery victory lap.

The adrenal stuff was also pushing my BP down. Now it's creeping up and I'm going to need adjustment in the BP meds. So, basically, if a patient is hypertensive and then goes through adrenal insufficiency, their BP is depressed, but it may not go low enough to meet clinical definitions of adrenal insufficiency due to underlying hypertension.

Also adrenals do not stop white coat, this is something that multiple adrenal patients have experienced. Yet the medical community continues to deny this is possible.

I get that there's a physiological basis for that denial, but we need to go back to the drawing board on that one. It's the same with the idea that a crisis can't have high blood pressure. I can find multiple patients with better blood work than mine who prove these conventions wrong. There are HUGE gaps in the science here for adrenal issues. HUGE and no one, except the patients, cares.

On the writing front, I have written 13k word this week and should top out at 15 to 16k. With last week's 10k, that's two short stories, one novella in progress and a novelette (which is almost a novella). They still need to be edited, pretty heavily in fact, but I've been very productive over all.

I have also discovered the train wreck that is Dance Moms. Watching it makes me glad my kid is going to be 6 feet tall and stocky, I could not handle it and neither could she. However, we have signed her up for formal dance classes at a studio with a competition team. Fortunately, the four-year-old class is not on anyone's radar. Also, she can't plie or ball change for love or money. I'm okay with that.

The Next Stage

2012-02-06T06:04:00.000-08:00

So Sunday I woke up to full body aches and I was a little nervous. My morning elliptical work out was awful. I was tired and I just couldn't get myself going. Despite everything I've written here, I did not take steroids.

But it was okay. I got a little more tired after the work out, but it passed in a couple hours.

Then I took a delicious nap because we had agreed on a lazy Sunday after church.

And did another Zumba workout.

All without steroids.

We'll see how it all pans out, but I think I'm transitioning to the next stage where I may not need to stress dose for exercise anymore. Illness remains to be seen.

A couple things have changed in my body's status quo:

1. I don't get the 'adrenal pain' so much anymore. It used to be almost constant but now it's mostly gone. Medicine doesn't recognize this pain, but since it correlates so well with when I feel adrenal and now that I'm not so adrenal, I'm comfortable blaming it on the adrenals.

2.I can gain weight now. Not so much lose, but I have to be careful with what I eat. So far I'm maintaining, but I really have to watch the scale and remember my carb free pass is now gone. All those times I ate ice cream and cake and candy and didn't gain weight? Yeah, that's over.

I do still have issues with low appetite when I get run down and I have continued to have low immune symptoms after exercise, just not every work out.

As for baby shower gifts... yes gift cards are really awesome because, even though you put the entire store on your baby registry, there's always something you need that didn't know you needed until after the baby arrived. Plus, diapers are expensive. So are breastfeeding and formula feeding, those gift cards are great financial cushions.

My favorite gift was from work where they presented me with a $500 Target gift card that somehow lasted us a year. It was a huge help.

And,when in doubt, books. Babies need books. Tactile books. Classics like Cat in the Hat. Just books. Nobody buys babies books and it's a crying shame. At 7-8 weeks their vision is such that they like to look at the pictures and hearing mommy or daddy's voice? Is just gravy.

In case you wondered, I got them several books and then a few outfits in bigger sizes, because everyone gives you cute newborn outfits and then your baby has to go naked after their first big growth spurt (about five minutes after birth) until you can get some bigger clothes. Not that I know anything about that because I'm a perfect mother. Ha.

Just Take Steroids

2012-02-04T13:40:00.000-08:00

I have a lot to do, which means here I am procrastinating online.

First, so I do not forget and so you can remind me I said this, the reason I take 5mg on the days I exercise is so I don't feel like roadkill later. Did two work outs yesterday. One jumping around making things up and then a Zumba Wii work out.

Today, busy as all get out: work, baby shower, dinner party and I'm okay. Because of the 5mg.

Duh. When will I get this?

So....Consulting went okay. Client informed me the day before they weren't in the same country, which, you know, would have been nice to know before I spent three days putting things together assuming they were from the country on their gmail account. It matters. A lot.

Then we did the baby shower, which I enjoyed because people were interested in what I had to say regarding various'the business of writing' related things. It is not often anyone gives a shit and, for some reason, I had a very interested audience.

Hmmm, now that I think about it, maybe they were frustrated writers?

But hey, people wanted to hear about me and what I thought and they were suitably impressed. I felt important! At a baby shower.

Also, it's kind of comical to watch parents-to-be unwrap presents with absolutely no clue about what is to come. Oh, they laugh at that butt paste stuff now, but wait until it fails to cure the diaper rash from hell.

And their confusion over hangers as baby shower gifts. They have no idea there are never enough hangers. Ever. The gift of hangers always come from experienced parents who've been hanging their kid's baptism outfit with a potato chip clip and some pipe cleaners...for the last five years.

Your first baby, you think you need everything. We were the same way. I bought all these changing pad covers and then ended up using just bath towels folded in half--they were much easier. Should have registered for some nice towels instead which would have lasted years, but noooo, had to have the useless changing pad covers that ended up in the land fill.

I had no idea about hangers either.

Just Right

2012-02-02T19:31:00.000-08:00

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.

Leading Up to 5mg

2012-01-31T10:36:00.001-08:00

So I'm writing the preamble to some hot vampire sex in my story (What? You thought I was the War and Peace type? Ha! Try it and see if it sells--pssst...it doesn't. Not unless there is beaucoup hot vampire sex) and I got an inquiry for some consulting on the business book I did.

I can feel my brain splitting into quadispheres trying to handle it all. This piece is family and housekeeping. Then there's writing. Then there's business/tutoring/all the other part-time gigs. Then there's the health piece.

When they collide, there's an explosion.

By the way, I am not actually certain that quadispheres is a word, but it sounds good, right?

So of course I'm tired. Blah blah blah--you know the story. Thinking of taking 5mg so I can get by without a nap because there is no time for that today.

It's 60F out today. I want to take the toddler for a bike ride and not be drunk with fatigue for my evening meeting for one of the part-time gigs as a result.

I want to be able to write more tonight without having to prop my eyes open with toothpicks.

I want to exercise without worrying about what it will cost me later.

Why is that so hard?

Why Everything Tastes Like Soap to Me: The Correlation Between Hyper-olfaction and Adrenal Insufficiency

2012-01-30T15:13:00.001-08:00

A fellow HPAA Suppression buddy turned me on to this ancient study from 1966:

"In adrenal insufficiency the olfactory sensitivity was roughly 100,000 times (range 103 to 108) more acute than that in the normal subjects.

Treatment with prednisolone, 20 mg per day,returned olfactory thresholds to normal in every patient within the first day, frequently before any change in serum electrolyte concentrations or body weight. When treatment with prednisolone was stopped, the increased olfactory sensitivity did not reappear for 5 to 7 days, or 1 to 3 days after taste sensitivity had become maximal."

(Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292845/pdf/jcinvest00268-0123.pdf)

Saturday, the day I caved and took 5mg so I didn't kill people with my car, I experienced intense anti-hunger. Nothing tasted right. We indulged in our little Falafel fetish and I couldn't eat it despite greedy anticipation. It didn't taste right. Hubby thought it was fine, so I assumed it was just me being me.

The Fatoush salad tasted okay, but I couldn't eat it either and kept starting a bite only to put the fork back down.

(Oddly enough the restaurant did not agree with our systems and I wonder if, perhaps, my sensory overload is actually able to pick up on problems with food. The last time I was the only one who thought something tasted funny, there was a food recall.)

I've also taken to running a second rinse in the dishwasher, otherwise, everything I eat tastes like Cascade. I'm the only one affected this way. It all tastes fine to everyone else.

My sense of smell is definitely more sensitive than it was even during pregnancy. I haven't bothered to correlate it with when I'm feeling insufficient vs. normal, but it definitely showed up to party on Saturday.

Sunday was better, but then I exercised, which means Monday has pretty much sucked. I have dialed down the intensity on the workouts, aiming for very low impact with minimal strength work, but even that is, apparently, too much. Zippo appetite today and just farking exhausted.

Work has been productive though. I'm in the throes of a story that has me by the throat. I went grocery shopping at Costco and the story was playing in 3D in the back of my mind the whole time--it's like living in a dream state that is constantly demanding you sit down and listen. It won't last so I'm trying to maximize writing time to get it all out before it goes *poof*.

Speed Blogging

2012-01-28T10:50:00.001-08:00

Good News: No one is puking and no one has lice.

Bad News: Preschool teacher was out with the pukes.

So we are still on puke watch, just for different reasons.

Good News: I did two elliptical workouts last week without the adrenal GI symptoms I'd been having.

Bad News: They completely ruined my day, wiping me out anyway.

And of course, the second I start feeling better I become very busy doing things because I can. And then, of course, I hit the wall and it sucks.

Today I hit the wall. Poor appetite, weakness and very tired, unable to wake up. So irritating and I am scheduled with something to do literally every minute of the day--I have five minutes before I have to leave for my next obligation.

So I took 5mg and it is helping.

The end.

Puke Watch 2012

2012-01-25T18:42:00.001-08:00

I'm so tired, I could just fall asleep as I type, so bear with me.

Things are, overall, going well with some hiccups along the way.

Sunday we all had a mild case of food poisoning. I upped my fluids and increased salt and didn't worry too much about it, but it did end up derailing me for about 48 hours. However, the adrenal component was only at 30% strength, which is a pretty major improvement. Instead of feeling weak for days, I felt adrenal weak for a couple hours. But then, the next day I was super tired. Which was annoying, but it passed.

Then today, I took the toddler to an indoor playground and a kid upchucked all over the place. Worse, the mom didn't take that as a sign to go home, so we did, basically throwing away the money we paid for the entrance fee.

I just have no words for that mom. You just don't do that if you're a halfway decent parent. Actively vomiting kids don't go to school or playdates or indoor parks. It's just not done. Not if you want to have mom friends or your kid to have playmates. Now if you want everyone to talk about you in an unflattering manner, then let your kid puke and play. Trust me, no one was without a snide opinion.

And the staff was clueless, "We don't have any policy in place for this." Wimpy teenagers afraid of conflict. Humph.

I told the hubby, if we start puking, we're going to the park and finding those people's cars. So help me, I will store it if I have to for future transport. Yes I am that mad about it.

I will be so pissed if I get sick because stomach flu will definitely mean steroids. Hopefully, we weren't exposed and it was just food poisoning.

Plus, have I mentioned Lice Watch 2012? No? Yeah, that's because I'm pretending it's not happening. We don't have lice yet and I think our odds are good to keep it that way, but yes, I am checking my kid's hair for lice like a chimp with a hair fetish.

Oh and I exercised today. Just a 30 minute elliptical workout. I had normal strength and stamina ( as opposed to adrenal strength and stamina). But it wiped me out pretty good after. Those annoying adrenals. Really I thought I would do better as the day-to-day has been pretty solid, but I guess exercise is still an adrenal minefield.

As for my knee...I think it's just the patella not tracking right. Not that I can say for sure, but I think/hope I just need a brace maybe? I'm just ignoring it a the moment, I can't afford a doctor visit because we have crappy health insurance.

And that's it. I am SO going to bed. If nothing makes sense, it's the adrenals.

All Over the Place

2012-01-21T15:14:00.000-08:00

I promised myself to stay off the computer today and give my body a break. I've been working on the computer so much, my back hurts from top to bottom.

But the hubby took the toddler off on some jaunt to a friend's house and I should probably take the time to work.

But I need a break.

Can't decide how to resolve the conflict so here I am.

Hi. How are you?

Still doing pretty well. Feeling kind of run down, and was fighting a sore throat/congestion bug yesterday.

Where I'm really in trouble is with my knee. My poor sainted knee. I would not blame it if it reported me for domestic violence.

Did a side kick about a month ago and felt a small *pop*. It's been grinding ever since, like fingernails on chalkboard. The patella is slanted, but I think it's been like that.

Have no idea what to do for it and the idea of going to the doctor makes me feel all adrenal and like I might possibly be allergic. I don't want to be the patient that makes Amelia Bedelia a diagnosis.

But I can't do my squats either and you know how I love me some squatting. HooRAH.

Books are doing well. I don't know how sustainable any of it is, the industry is constantly shifting which is annoying. The evolution of the internet is all about giving small webpreneurs the shaft. However, if I can build on it, I may be able to actually make an income at some point. The trick is to be prolific while still maintaining quality--that's a hard trick, in case you were wondering.

The other trick is to stay ahead of the plagiarists who are really just credit card thieves. They scrape content, republish it and then charge to the limit. Ever see an ebook listed for $100 $700? That's probably a stolen credit card laundering scheme. Especially if the cover is particularly bad.

Still no exercise. I've been working too hard to take the time and then I was kind of maybe sick. Plus, I'm in a place right now where I don't miss it too much. That means I need to find a Zumba class stat.

Waking Up

2012-01-20T06:51:00.001-08:00

Toddler slept in until almost 9am today! Woot!

She appears to also have grown another quarter inch. At this rate she'll surpass professional basketball players by 2013.

She also makes me practice 10-1=9, 9-1=8 etc... before I tuck her in at night.

Plus we do 'reading cheers' as she's ready to read but tries to tell me 'that's for older kids mom'. So I call BS with cheerleading for literacy. Note: I was never an actual cheerleader.

(Cheers are a made-up thing where we clap out the letters to a word and do a motion that means the word--like for book you fold open your hands like you're reading a book or for up, you point up. She's into it so I make like Cheri Oteri and pretend I'm killing it on SNL.)

OMG the cuteness slays me. She's going through a fun phase.

I have mostly caught up on sleep. My energy has been good, I had some adrenal weakness with the sleep deprivation and there was one day where I regretted not canceling work, but it was, overall, mild. For the first time in almost two years I would call myself resilient. I bounced more than I crashed.

I worked my ass off, publishing 3 different stories this week. Plus two student gigs at night.

My appetite has been steroid insane except I haven't had any in a while. It's like my body woke up and realized it was missing about two years of calories. I actually gained weight, which is a huge change. I didn't even eat any pie!

The only thing I haven't done is add exercise to the mix. Will be interesting to see what happens with that.

Wii Tired

2012-01-17T18:04:00.000-08:00

Mike stopped by and left a comment on the whole Wii Motion Plus thing...

The wii motion plus is now being incorporated into every wii remote. It should have been there from the beginning. An accelerometer just can't give the feedback needed.
I hacked a wii motion plus with a tri wing screwdriver to make some sensors for a self balancing robot. Worked great.

The second he started linking to a thing actually called a 'Nintendo Screwdriver' my brain began to melt.

However, I did want to say, I totally agree that it is incorporated into every Wii remote with one caveat: It's only the Nintendo brand products. If you buy an off brand, trying to save money, guess what? You may need to spend another $20 for the Motion Plus thing-y which is mostly out of stock due to a)Xmas and b)everyone else knows you just buy the brand name remote so demand is kind of low.

Although I think I still saved $10. It only took me three internet searches, thirty minutes of swearing in confusion at the Wii when it wouldn't let our off brand remote play the game without the Motion Plus attachment, and two trips to the store once we got a clue to do so.

Totally your call on whether or not all that was worth it to save $10.

The toddler is not sleeping anymore. So I am a little punch drunk. Exhibit A: I was talking about finding shrunken heads in a linen closet (true story) while working at an elementary school today.

To adults. Not kids. I bet the kids would've loved it though.

Anyway, she's going through a growth and development spurt. She grew a 1/4" this week for a total of 2" in two months and I overheard her working out rudimentary subtraction. Five, take away one is, 1,2,3, FOUR! Four take away one is 1,2 THREE!

So, she's amazing and I feel like shit.

Rambling, Rambling, Rambling

2012-01-16T06:36:00.000-08:00

I have a lot to say about adrenal glands, but have not been able to sit down and gather my thoughts. I just completed two projects and have been consumed with getting them launched.

By the way...my last project, the novella, averages 4 star reviews. I have been very blessed with happy readers (although at least one reviewer still has it out for me). However this has not translated into serious sales, which is interesting. I even did a free promotion and made it up to #10 on various best seller lists with several thousand copies distributed. That garnered me another 4 star review and that was it. Such a confounding business this writing stuff.

Oh wait, I'm off topic. I'm kind of all over the place today. Okay, my health... I am back to the same old, same old pattern. Exercise makes things worse. Even mild exercise. Without steroids I can be way more tired than I should be. Yet if I take steroids, even a low dose would probably be too much now as I'm not in the hole any more.

So, you know, trucking along. The usual 'having so much fun with fatigue sloths are jealous.'

Went to church yesterday and they sang a traditional hymn for once. We go to the 'contemporary praise' service because the timing is better for us. Normally they sing emo bipolar-off-their-meds songs about self loathing --All set to a danceable beat which makes it even creepier. I keep waiting for us to start cutting together.-- but yesterday they slipped in a traditional hymn.

I love hymns. They are deeply spiritual for me in a way that sermons never are. As a teen, I used to inexpertly bang them out on a piano for hours on end. I have missed them because I am not an Emo Goth for Christ. (If you are, boy, can I recommend a church service for you!)

Spirit of the Living God is so beautiful. Such a pure harmony. And, for whatever reason, no one else sang it yesterday except me and the lead band singer. Our voices blended really nicely to where the pastor requested 'one more time' and, inside the notes, there was a beauty of stillness, the way a bell tone hangs in the air. The notes washed through me with aching sweetness. It was a like a meditation.

So what I'm saying, is I like hymns and yesterday was a good day for that. Making today good for purple prose on the topic.

We also signed up for the chili cook off fundraiser, which is really the kind of thing I go to church for. That and Sunday School for the toddler.

Here's a typical scenario of how I volunteer when I don't know how I'll feel. First, I evaluated what I could do that would not lock me into a specific day or time. In this case, providing chili and dessert. Yes it has a deadline, but I can work ahead and take breaks during. Then, I asked the hubby to volunteer for grunt work on the day of, so, if I feel well enough, I can slip in too.

He wanted to volunteer anyway so it worked out well. I still remember Xmas 2010 when I had volunteered to work the Breakfast with Santa at the toddler's preschool, but was too ill to do so on the day of and had to send the hubby instead. That raised some eyebrows, so I think it's better to show up as a bonus extra helper than bow out at the last minute.

C'est tout.

Better

2012-01-14T03:58:00.000-08:00

It turned out to be a good call stopping the steroids. Would not have predicted that, but glad I listened to the instinct to do so.

Energy was even with some minor fatigue. Minor like the way you feel after the flu is done with you; better but still needing some sleep.

Not sure what the rest of today will bring or tomorrow for that matter. This is probably weird, but mostly I'm afraid of what will happen next. I can't ever seem to get ahead of the game here. Not in any meaningful way.

It feels like it will never end. Never be over. Never be behind me but always before me, pouncing.

I was told by a mom friend to be optimistic, to which I responded, I tried that and had a crisis instead.

So they said, bitch your way through.

I thought that's what I was doing, I said.

Haven't I? I've kept a baseline of fitness going. I've maintained most of my commitments. It has not been easy and I have not always been 100%, but I think, overall, I have learned to work around/through/with the fatigue as much as possible.

They want me to commit to a stair run and a 5k. I can't. Maybe the day of, if I've been able to work out consistently, I could, but I have no idea how I will feel. I don't even know if my next work out is going to be safe. I can't count on being able to perform right now.

I explained that it's like a 24/7 mono. Or a flu that never gets better.

So I try not to make promises I can't keep.

Maybe that's not bitch enough, but it's the only way to navigate it that I can see.

Sorry if I'm not bitch enough for you. I'm trying.

Chatty

2012-01-13T04:21:00.000-08:00

For all us dancing divas, can I just recommend the LED light wands from the Target toy section? (Or something like this from Amazon.)We got one for the toddler and we love turning off the lights and using the light wand. In fact, we plan to invest quite heavily in funky lights for dancing in the dark.

We're kind of committed to the dancing thing. Or is it... we should be committed for the dancing thing? I always forget.

This is why I kind of can't wait to try the dancing games on the Wii.

Also, I spent most of the day kicking myself for using the phrase 'feral monkeys' in yesterday's post because aren't all monkeys pretty much feral? Even the alleged tame one that ripped off that woman's face? I should have gone with feral cats.

It ate at me and I refused to let myself go in and edit it because this blog is not about quality. In any way shape or form. I am way too busy editing other stuff to edit this blog.

Yet here I am, fixated on something you probably aren't even thinking about.

Anyway, it's feral cats, people.

Maybe my inner editor will stop hyperventilating now.

Thursday started well but I got bogged down with fatigue. I'm not sure what was going on, but I think I'm going to try and not take anything today. Just because there was a teeny tiny feeling of possibly too much steroid. I'm not sure I believe that feeling and certainly the sensation of adrenal pain was stronger, but it doesn't hurt to try.

This has really really really sucked. I told the hubby that next time I am huddled on the couch, shivering from cold, hunched over from nausea, afraid to even move lest I hurl to please please please suggest that maybe I should take some steroids. Maybe even bring me the pills with some water even. Because I am not above doing stupid things like thinking serious adrenal symptoms do not require steroids.

You know why I didn't take any that day? Because I had taken 5mg for the hike. I kept thinking, 'but I took 5mg' like that made it okay. It didn't.

More Steroids and Wii (with comments on comments)

2012-01-12T05:50:00.000-08:00

I locked myself out of the house last night. Doh. Hubby and toddler were at Disney on Ice... the event that manages to add $10 per ticket in fees. Which is kind of why I didn't go. Too expensive for the three of us, even with the nose bleed seats.

So, after work, I went shopping. The toddler needed things like underwear and socks.(And OMG the swimsuits are out already, which means I have to buy them NOW before they go out of stock. So stupid. It's January people!) Plus, I finally got a new BP unit--that whole process has been a comedy of errors. At one point, Amazon gave me a $10 credit because they screwed up so badly. Without anything shipping or me even spending any money.

Then there's a whole story about my doctor's prescription for it and home health screw ups and my stupid insurance. Basically, the reason it took me 2? 3? months to get this thing is not my fault.

5mg yesterday was okay, but felt like an underdose. Slugged through most of the morning, finally perking up in the afternoon. My energy was good for coming home from work to sit on the couch last night. Not so good for killing two hours shopping. I became very, very tired and regressed to being fatigued enough to doze in the car.

On a whim, I took some sublingual B12 yesterday. Who knows what effect it had or didn't have, but I woke up much better today. (So far.) I'm going to stick with 5mg for a little bit longer. I do not see exercise in my future any time soon.

I did not have a crisis, but I had a brush with some kind of adrenal badassery. This is going to take a while. (And feeds my suspicion/fear that I will never be the same again.)

Thanks to Aviva for that list of useless Wii things. I agree with all of it except the Motion Plus accessory. You have to have it or you can't play the games that use it and it is standard on the Wii brand remotes--meaning it's now being incorporated into every game. I thought I was being so frugal buying an off brand kids' remote for $29 vs. the $40 Wii price, except it didn't come with Wii Motion Plus.

We spent an hour sniping at each other and the Wii trying to figure out why her remote wouldn't work with the one game we have. Nothing like technology problems to bring out the best in people! It didn't help that the game's messages to us were not upfront about what we needed.

"You need a remote to play this game."

No shit Sherlock! Look? See this remote here? The one I'm about to shove up your Sync button?

"You need a remote to play this game."

At that point, the hubby and I turned on each other, behaving a lot like feral monkeys who've eaten a case of Pixie Stixs.

Like I told the hubby, I would be interested in the 10th generation of this technology. Not loving the first/second generation so much. But I hear there are better games out there, such as the dance games. (And just say NO to dance shame. Dancing is cool. The only people who poo-poo it are the ones who can't dance!)

And thank you, Aviva for using the affiliate link. We don't make a lot, but it helps keep me in low carb necessities and vitamins.

Upward

2012-01-11T05:53:00.000-08:00

I took about 8 mg yesterday in a split dose. It was a miracle. Huge difference.

So today I will do just 5mg for the day and see how it goes. I woke up fatigued with some weakness, which was frustrating. Also, have been battling cold sores.

For the novelty of talking about something other than my sorry ass...We finally wrested the Wii away from my parents. For two years they've lived in denial. "We're gonna use it." "We're gonna work out." "You can't have it."

Finally, I prevailed in my efforts to take it over.

We got it home and assembled and found they hadn't even opened the one game they bought. For two years they never got past the demo games.

Gonna work out my ass.

You begin to see why I was so persistent with ' the Wii is mine' campaign, yes? It wasn't being used at all.

Anyway, the idea was to provide more stuff for the toddler to do dealing with hand-eye coordination and physical activity. We just didn't realize that even a free Wii is expensive.

Because my parents hadn't bought any accessories. Nothing.

And OMG that shit is expensive. What a scam. You buy a $300 gaming system that needs at least another $200 investment to reach full capability. What bullshit.

And the games are kind of stupid. Like the sword fight duel in Wii resort. Basically, you just hack your remote as fast as you can and that's it. The jet ski is over sensitive and impossible to steer. Archery is the best game in that you get the chance to really apply skill, but you pay $50 to shoot imaginary arrows!

But the toddler likes it and we'll rent some other games and see if that changes our minds. And see if it's worth buying more accessories--buying one extra remote was underwhelming. Soooo not impressed with the umpteen widgets necessary to use a Wii. Feels like a bait and switch. Like they sell an incomplete system on purpose.

We are not gamers. Can you tell?

There's No Mapquest for This

2012-01-10T08:42:00.000-08:00

Just super tired.

Took about 2mg this morning. It's not enough. Not even close.

I dug myself a hole and climbed in. I'm not sure what it will take to get out.

The sneezing is slowing down though. Just in time for the weight loss to start (again, happy to have it, but not thrilled with how it comes about).

Even the aerobics bunny is finally on mute.

Will be fine tuning steroid dose, trying to find my way back to normal.

Winter Carnival

2012-01-09T10:56:00.001-08:00

I don't know if I'm sick, but I have felt better. Much better.

Fatigue has been bad. I guess I should have taken steroids yesterday??? Still sorting out the rules on this and still trying to get by without whenever I can.

But it looks like I have another kinda sorta cold. One medication can't touch. Nothing is giving me relief. Not allergy meds. Not cold meds. Nothing. However it is not as bad as the last one, it's just the constant itch-sneeze in my nose that is driving me up the wall.

On the fatigue front, I have been so weak, I couldn't climb stairs without resting. I'm back to needing to lie down in the afternoons. Not eating much either.

And the asthma hack is on board.

Oddly enough there's this aerobics bunny bitch bouncing around in my psyche suggesting we go out for a walk. Or do some squats. Or hey, what about some push-ups? I have no idea where this drive to exercise is coming from because I am in no shape to do anything.

Fortunately, she shuts up when I'm asleep.

Crisis-y

2012-01-08T05:38:00.000-08:00

So because the sack of flesh I inhabit is incompetent, things got a little crisis-y last night.

Let me back up.

First, the hubby and I got a sitter and went for an hour long walk. The weather has been so nice that, even if my lungs are trapping air like a starving hunter, I just can't sit and watch it go by.

I was going to take just 2.5mg, but was not feeling so hot and upped it to 5mg feeling lots of steroid guilt as I did so.

There's no way to know if a dose is too little or too much until I take it. Likewise, the distinctions between too little, too much and just right are hard to articulate. I feel 'off' when the dose is too much. I feel 'adrenal' when it's too little. And just right is fantastic, but rare and tenuous as a double rainbow.

My thought yesterday that 5mg would be too much and I was doing it wrong, but actually it was a good choice. As we walked, I felt strength and energy coming online. It wasn't too much, it was just enough.

But not enough to save me from struggling with energy later or to avoid GI problems. Once again, it came out of nowhere. Once again, we ate the same food and I was the only one sick. I tried to deny it was adrenal, but, when I started shivering from cold, 'not adrenal' was a hard thing to believe. Then I got up to 'run' to the bathroom and all I could manage was the sad zombie shuffle.

Thankfully, I did not throw up, just was wracked with nausea for hours and hours. Thankfully, the electric blanket heated me right up and I was able to become warm enough to turn it off, a positive sign that the worst was over.

Today I am sneezy (low immunity), zero appetite and physically tired with heavy limbs. But I think I can out rest it. Just have to remember that major life stress on top of physical activity might require more steroids than I would normally take.

Bad News

2012-01-07T06:42:00.000-08:00

Think of the worst relative you know. The black sheep. The scandalous one. The one that makes you gasp and shake your head. The one you don't talk about because it's embarrassing.

The one you avoid.

I have nine of those assholes in just one side of my family.

Yesterday we received some disturbing news.

For me, it has been crushing. Which translates into stress. I couldn't breathe yesterday. Maybe it was the weather, which had shifted from 20 to a balmy 50, but I couldn't walk and talk. It was too much.

I shut down, pulled back into my shell, just trying to ~~process things~~ breathe. It has reached the point that we will not have contact with some people and will be limiting contact with everyone else. Such a simple thing to write when there's nothing easy about it.

At my last appointment, the endo asked me if I have muscle pain and I denied it.

Yet today I am reminded that sometimes I do have muscle pain and it's not steroid withdrawal. My joints hurt. My arches and calves feel like I've been wearing those wedding shoes non-stop. My thighs hurt to the touch.

And I am angry to be so weak when what I really need is strength.

Zumba Nevermore

2012-01-05T07:52:00.000-08:00

Got up this morning and hauled my very uninterested ass to Zumba only to find that the program has been cancelled. Forever.

This was a complication as I had already taken 5mg in anticipation of a hard work out. Now I had to make something up on my own and, for once, I was not feeling inspired.

To make things more fun, the toddler has been in a snit ever since she realized she wasn't going to jump on a bunch of inflatables at the Zumba place. The hubby is still home sick and expects to be accommodated.

"Try being me," I said.

It took him a moment, but he got a clue.

So I jumped around in the dining room, dodging a screaming toddler and a sick husband who decided he would compensate for his recent sense of entitlement by cleaning right where I was exercising.

Oy.

It's going to be a day. Everyone got off on the wrong foot.

Yesterday went really well. For the majority of the afternoon, my energy was in perfect balance (you don't know what that feels like unless you've been living without it). I could have done anything I wanted. Worked. Cleaned. Cooked. Even all three. I actually focused on putting the finishing touches on my next project.

Later that night, I did hit the wall, but it was soft hit. I was walking to the kitchen and my arms just got very heavy and fatigue dragged on my legs. The day had gone so well, I was taken by surprise.

And that's the Zumba/adrenal report for today.

Chugging Along

2012-01-04T07:42:00.000-08:00

More fatigue today than yesterday. I think. I didn't quite wake up until around 3pm yesterday, so it wasn't like I was bursting with energy, but today just seems 'tireder' for whatever reason.

However, I think things are, overall, improved. Possibly because stress dosing doesn't leave me buried in fatigue and a strained system failing to meet demand. I'm staying out of the hole!

Or maybe things are just getting better.

Or maybe it's both.

We'll see what shakes out. Tomorrow I hope to go to Zumba and I will stress dose for that since it will be the first time since October.

Our visiting relative left this morning and the toddler goes back to school today, meaning the holidays are over for us. It was fun. I'm going to miss them (both the holidays and the relative).

Stopping Steroids and Staying Fat Against My Will

2012-01-03T10:22:00.001-08:00

I stopped the steroids today. I will miss feeling normal. I can't believe how huge a help they were with that cold (which has put the hubby on antibiotics as of today). I took 10 mg total the day of the wedding, an extra 5mg at dinner and wow! I could enjoy myself without a lack of energy holding me back.

This maybe means that the 5mg I was taking for the cold was too low a stress dose. Except last time, 10mg seemed like too much. But that cold was not as bad as this one...?

So far today, feeling blech.

Headache. Cranky. Tired.

Doesn't help that I've gone back to strict low carbing at the same time. Would really really like to lose weight this year and GET IT DONE ALREADY.

Oh my God, I'm so sick of trying to lose weight. The only magic trick in my metabolism's repertoire is not gaining weight. I can't seem to trigger loss unless I have an adrenal crisis.

At least my body is taking the crisis loss as the new set point--whatever I do, the number is the same. Too bad it's not a million pounds less than the last one.

And I've decided, after reading other people's holiday gain reports, that it is weird I didn't gain weight. Like ANY weight. I ate pints of ice cream and nothing.

Christmas Eve, I essentially had one bite of everything so I could save room to eat a quarter of a pumpkin pie for dessert. And then have more. Nothing. Not even water weight, which has happened never.

The steroids eliminated the anti-hunger for the most part. I didn't meet a carb I didn't eat for over a week. Nothing, even though I was on steroids almost the entire time.

WTF is that about? And why can't I leverage that dynamic into weight loss??????????????????

I'm not any where near my goal weight either. So it's not the usual slow down you see for the last 10 pounds.

So anyhoo, I stopped steroids and I'm still fat, but can eat pretty much whatever I want without gaining. Hide your pies.

The Glitz and Cold Medicine of a New Year

2012-01-01T11:30:00.000-08:00

I wore the shoes! I tried them on for the hell of it and my ankles did not start whimpering 'timber'. I could actually walk. So I wore the shoes. My guess is that some good came out of that squat work out--it seems I built the strength necessary to manage such stiletto heights.

Got compliments on the dress from people I didn't even know. A high five after a fast jive. (Note: We wing it completely. We are not formally trained ballroom anything, but we both danced folk.You can translate a lot from one genre to a next if you're willing to be creative and not care what you look like doing it.)

(Also, I did not dance in the shoes. I'm not an idiot. I bring flats.)

Had a great time. Both of us were sick as dogs though. I had a good start to the day and then promptly deflated. The car ride down, we both nursed hot tea and squabbled over the last dose of cold meds. Then we laughed at how silly it was to be so miserable to where you're fighting over drugs on the way to a party.

Steroids got me through along with the asthma inhaler on the dance floor. The steroids made the night possible. I felt so normal, so ready to burn up the floor. Like it was just a mere cold, not the anti-Christ in viral form. The hubby is lucky that sweating helps him kick colds, so a couple hours on the dancing actually helped him.

I'm still sick but I think it's time/safe to get rid of the steroids. I'm going to give it one more day at 5mg just to boost me through the post-dancing/travel/virus period and then stop.

The best part so far has been the homecoming. This was our first big night out since the toddler was born. I am awash in kisses and hugs and 'yays you're home'. Trying to hold on tight to that because watching my teen cousins last night made me realize this won't last.

Happy New Year!

The Adventure Begins

2011-12-31T05:27:00.000-08:00

I woke up feeling human again. We've left the butt-plug-up-my-nose phase and are entering the asthma wonderland, which means coughing all night.

Believe it or not, asthma is an improvement. Now we all cross fingers and toes that it's mild and goes away quickly instead of building up into another problem.

Hubby was doing okay but says he's worse now. Unfortunately, we can no longer cancel our plans to go to the wedding. We are locked into the pain.

The toddler and babysitter are still holding steady.

Tonight, we will be contagious at a wedding whether we (or anyone else) like it or not. My goal is to stay 50 feet away from the bride and groom and communicate with them via text and hand signals.

Don't want to be the relative who makes them so sick they never see the beach on their honeymoon.

Proud Kleenex Hoarder

2011-12-30T05:37:00.000-08:00

No one is nearly as sick as I am, which means all the Kleenex is mine and we might still be able to pull off this wedding. Just waiting to see how the babysitter fares as they still aren't sick at all.

The toddler is sneezy and blew her nose once. Hubby had a sore throat and was tired, but says he's fine today.

So long as there's someone healthy enough to do the driving (hint: not me) and the toddler is not seriously ill, we can still do this thing.

No weight gain, unless you want to get picky about 2 ounces, which will probably be gone with the next sneeze. I've been eating pretty well too. I guess I just needed to be surrounded by forbidden carbs. With the cold, I'm back to missing meals and forcing myself to eat.

Spent all of Thursday in bed. Kept trying to wake-up but couldn't and didn't go upright until 1pm. Today I was out of bed by 8am, but am planning to go back. The stress dose has stayed at 5mg, which does not feel like enough, but since I'm not doing anything but sleeping and the asthma is controlled, I'll leave it. For the wedding it will need to go up though.

For Brittany

2011-12-29T11:07:00.000-08:00

Brittany left a comment and my answers are below. I'm pretty sick so I think my response reflects a distinct lack of higher brain function, apologies in advance.

"Hi, I posted here before, and you were great with your responses. I finally tapered off steroids after tapering for 4 years. I had my first normal low dose ACTH test (morning cortisol of 10, 15 at 30 min, 18 at 60 min)- just met the labs criteria of normal.

So, I'm not supposed to take hydrocortisone again, even when sick. And, I'm not supposed to use the injection if injured. But, I think my cortisol function probably fluctuates. But, the endo thinks I am fine and congratulated me on my normal adrenal function.

I woke up sick in the night the other night and passed out. I ended up taking a small dose of the hydrocortisone I still have and was able to go back to bed. I never vomited or really got sick - just felt extremely nauseated and then just lousy for several days.

This kind of thing happened prior to going on HC, but hadn't happened in several years.

Is there any test that would show inconsistent cortisol function?"

Hi Brittany! Congrats on getting off steroids, however now you are in the Medical Mojave with me. A place where you still need medical care, but there's none to be found. We're all just one co-pay away from anti-depressants and a psych diagnosis. Yipee!

Your ACTH challenge was normal per most medical textbooks. These textbooks use a lot of column inches to explain the test and then throw in just one sentence that says something like 'but don't forget to pay attention to the patient's symptoms.' There is not a doctor on this earth that remembers that one-off sentence.

A minority of studies/textbooks would suggest you need to reach 20 or 21 before you can be declared cured. Those references are mostly found in the UK, so no one in the US pays any attention to them.

From real life experience, I would say that your ACTH challenge was just barely normal. Normal is nowhere near the same as optimal. If your endo kept track of you, they would see that your am cortisol would continue to rise with further recovery meaning, by logical extension, that your ACTH challenge would increase as well, meaning the test you just had? Is not normal for you. A smart person would be able to see that normal is a clinical definition that has little bearing on reality.

What's important is YOUR normal, not the textbook normal. A good endo would listen to you since the consequences of no steroids are things like hospitalization, death, loss of job etc... A good endo should never hesitate to equip patients for stress dosing. How doctors deny steroids and get any sleep at night, I have no idea.

You are still recovering and, as you suspect, probably need to stress dose. So refill whatever refills you have left on the steroids and start reading up on stress dosing. It's going to be up to you to figure out how to dose--even a great endo could only give you guidelines, you have to determine what your body needs yourself.

I would also strongly suggest trying another endo. I somehow was fortunate enough to find someone who agrees to let me stress dose. Lightning can strike twice, right?

As for passing out and small doses of HC... by the time you are passing out, I would expect small doses to be insufficient. Maybe it was an orthostatic hypotension thing--do you check your BP at home? I don't know. Just keep an eye on it as it may not be strictly adrenal.

An ITT or OMT might be of use to show HPA axis function or lack thereof, but the ITT is a bit dangerous so doctors don't like to use it and the OMT requires certain lab capabilities that are hard to find (from what I've read). Don't count on testing for help. The testing they have is either insensitive, too risky or technically difficult.

You and I are probably in the same boat: Our systems are compromised and we can see it, but medicine is blind.

The real failure is that medicine has no capability to catch HPA axis problems early, they can only test it when it's already gone. So patients suffer until their bodies can pass the tests.

Totally Whining

2011-12-29T04:38:00.000-08:00

We're all sick now and down to the last box of Kleenex. It's going to be a fight as to who gets soft tissue and who is stuck with the recycled eco-friendly toilet paper. Also, we are desperate to find that 3 year old tube of diaper ointment so we can coat our noses with it.

I went through a box of Kleenex myself in one day. This is one of those nuclear colds with ties to Al Qaeda. The mission is to terrorize noses of the West.

I did pass out some vitamins once I knew I was sick, so hopefully everyone else will miss out on the depths of misery that have been mine to plummet the last two days. I don't know if I can leave the toddler to go to the wedding if she gets as sick as this.

Why? Here's just a small sampling...

Will they know what to watch for with the asthma? And how to treat it? Will they wake up at night even or do they sleep like my husband? Can they deal with the hyperactivity from the meds?

I will spend the entire time worrying about her. That's what mother's do. Maybe I'll just send the hubby by himself to the wedding.

Also, I am taking 5mg because hello asthma and also, hey there, adrenals--although I managed to shut them out before they could make things worse. Aside from some heavy limbed-ness, energy was actually pretty good.

Still might have to go up to 10mg for the lungs, if not higher.

Added in Pulmicort too. Lungs are creaking anyways. That's what asthma does.

My nose is such a red hot ball of misery, sleep is tough. The sneezing and itching are constant. Totally worst cold ever.

I think...I think...*looks around furtively* I think I have a man cold. *runs for cover*

This can still turn around, right? It doesn't have to be the snot apocalypse, right? I might still get to wear a pretty dress, dance (slowly because, you know, the lungs), and sleep in a hotel with the full complement of cable channels, yes?

Doom

2011-12-28T05:34:00.000-08:00

I have the boogies of doom.

And am feeling very petulant about it.

Sick sucks.

I just want to go back to bed, but my throat is so yuck I need to soak it in some hot tea first.

I found a dress to wear to the wedding on sale for $50. So that was a win. It looks pretty much like this one, but has a burgundy skirt.

Now if the boogies will make a swift exit so I can have a good time.

ID

2011-12-27T04:34:00.000-08:00

I ordered a new medic alert bracelet. One for the long haul as the crisis made quite an impression.

The last one said "Secondary Adrenal Insufficiency" which is not technically accurate anymore and is not always true for me anyway. I am not insufficient all the time but I am probably always at risk of a stress related crisis.

This bracelet went with:

Long Term Steroid Use
Hx: Adrenal Insufficiency
Hx: Adrenal Crisis

Not that ambulances carry or administer steroids, but, if I'm ever in a car accident, at least they'll know why I'm dying.

Boogie Woogie

2011-12-26T06:44:00.000-08:00

It says something about our lifestyle that, when we turn off the lights, break out the glow sticks and crank up the music, our dogs don't even blink, stir, or bother to yawn. Their crazy owners are old hat.

In an effort to teach good binging habits to my kid, we held a dance party in the front hall after dinner. Three generations boogied their hearts out to Maroon 5's new album.

Then I hit the wall pretty hard. Didn't take steroids as I'm still sorting out the rules. Went to bed very early and, today, I'm trying to figure out what I will be doing and will it require steroids? I don't know!

As for the binging, I have not gained any weight. That is surprising. I'm still not used to eating food I shouldn't and not paying for it in poundage. Whatever the adrenals are doing plus exercise and skipping meals during the holidays seems to be an effective strategy.

Sugar Coated

2011-12-25T13:46:00.000-08:00

We are still in the throes of Christmas here, with one more big family celebration yet waiting for us.

The toddler woke to many educational presents under the tree. Things she didn't understand what they were or what they did by looking at them. Which meant that the big hit was the $5 Hello Kitty lip gloss.

Now that things are out of the box and have batteries, she's able to play with them and I feel less and less that I ruined her Christmas. She was very gracious about it, but even as she was unwrapping and going "Yay, I got this...um...thing" you could see a 'WTF is this sh*t' look cross her face.

She did like the cardboard castle once we got it out of the box and assembled. She quickly swapped PJs for a princess dress and told Daddy, "You decorate my castle, I'll be the Queen."

The glow sticks in the bath with the wind-up swim toys were also a huge hit once they were in use. We had to pry her out the tub, one pruned finger at a time.

Christmas Eve we went to the zoo, which is a quasi family tradition depending on the weather. We sang carols to the bears and watched the orangutans eat poop. It was fun.

I was exhausted as I managed to mess myself up pretty badly with that work out last Thursday. I 'squatted myself into oblivion', something I haven't done in about a decade. My legs do not tell me when I've crossed the line. I am pretty good about compensating for that, but thought I was in shape enough for the work out when I wasn't. My body let me keep going and never sent a stop signal.

My quads and knees were quite swollen and were unable to support normal movement. So I lurched around the zoo, wincing every time I had to sit or get up.

Deep tissue massage helped. Walking at the zoo helped even though it sucked while I was doing it. Laying with the heating pad on high for hours on end helped. Tylenol, Advil etc....

My Christmas miracle was that I could walk mostly normally on the 25th. We went for a 1.5 mile walk (our gift to the dogs) Christmas Day and I didn't start limping until the end.

I considered steroids, but held off until it was no longer a question. Possibly on Christmas Eve night there was some adrenal weirdness I assume from pushing myself to walk so much with traumatized muscles. I was up most of the night positively ill with GI symptoms, but, aside from being certain I was about to vomit for hours on end, it passed. Just left me limp with fatigue for Christmas morning.

I was so wiped, I made the toddler watch cartoons instead of run down to get her presents. I literally could not wake up.

Once I did get moving things gradually improved. Without steroids. Kinda sorta.

In other news, I am so sick of sugar. Although the hubby made wonderful Nutella and banana crepes. He's a keeper. But I wouldn't mind a gluten free, sugar free version.

I never thought I would say this, but I miss my boring diet of hard boiled eggs alternated with cottage cheese with salad on the side.

The up shot of this never-ending post is Christmas was/is nice, but those adrenals are real buttinskys.

An Exercise in Progress

2011-12-23T08:03:00.000-08:00

Did my first 2.5mg work out on Thursday. It was much better. I did not collapse on the nearest horizontal surface afterwards.

However I did hit a pretty big wall of fatigue for a few hours and started feeling flu-ish. The fatigue could be all the junk food I ate (sugar crash), but the flu bit is some kind of adrenal aftereffect.

Even so, we went to the grocery store and watched a movie after, which is unheard of. So progress.

These workouts are intense and I'm fairly deconditioned so I am going to take the advice of a wise adrenal patient and try 5mg next time. Just until I can do those squats and still walk the next day. Right now, I waddle like Jabba the Hut with a bad case of chub rub. Sooooo sore. OMG. I thought I was further along than this, but nope.

Today I'm still sneezey and feeling tired, but the fatigue is not outside the realm of normal. I'm pretty sore and my energy is okay-ish, so I think it's just the work out kicking my ass. Although the early cold symptoms are still adrenal whatsit so... eh. Whatever. I was trying to be optimistic but the logic wasn't holding together.

Moving on...

I don't think steroids are necessary for all exercise. Just the hard workouts, which would include the strength cardio and Zumba. Eventually, I anticipate not needing anything for Zumba, but the strength cardio will probably require something for a while.

Walking and elliptical, I would not pre-dose for, but could see post-workout dosing if I hit the wall. I can also foresee issues when I start trying to exercise daily (which may never happen, but I can dream),i.e. trying to walk while still recovering from strength work . The New Year's wedding will be an updose just because I'm a hard core dancer.

And that is more than anyone probably wants to know. But I am excited about exercise. I really do like to move. I like to be strong. I told the hubby, lucky for him my adrenals are so wimpy or I'd make him an amateur swing dance champion.

Happy Holidays Everyone!

Working With

2011-12-22T09:28:00.000-08:00

Saw the endo.

They are working with me. I think they understand what I'm saying. Basically the upper reaches of my system are not performing. I have a certain performance range and anything above it just doesn't go as planned.

Or, the other way I put it, I'm an under-inflated basketball. There's just no bounce. No resiliency.

Think about it. All the things that demand extra cortisol--illness, surgery, exercise--are things I have problems with. I had problems before the crisis and they have intensified since.

Daily life ain't so hot either, but I'm not afraid of being tired, I'm afraid of not having a life. I'll deal with a certain level of fatigue because the only alternative is to be on steroids every day, which, hell to the NO.

So even though all my blood work is awesome, we are in agreement that I will stress dose for exercise and illness. I'll try 2.5mg before exercise and up to 10mg for illness and we'll see how it shakes out.

Hopefully this will all even out over time. I had just gotten to where I could bound out of bed in the morning when the crisis hit. I hope I can get back to that.

I did forget to mention some things and am so mad at myself... The shaking and cold that came with the crisis, which separated it markedly from stomach flu (although I think the endo concedes it was a crisis or at least didn't argue with me). Also, the ongoing lack of appetite.

Yesterday, being so wiped, I didn't have any hunger until dinner. I did not end up taking 5mg, which I regret because it was a critical day with lots of activity and everything took me thrice as long.

Today is better and is at a slower pace, enough to incorporate a nap if I need it. (OMG I have to say, how lame is it that I talk about naps like I'm a two-year-old? Oh how the mighty have fallen!) I did a carb load since I was so hungry. Actually finished my meal before the hubby, which has happened...never.

Crash Boom Clean

2011-12-21T06:40:00.000-08:00

I'm tired, man. Just too much tired. Slept all night with the electric blanket on high and didn't get hot. Being that cold is something I associate with adrenal weirdness. Usually I fry and turn it off.

My back and stomach were also throbbing and aching this morning. Sustained throbbing like that hasn't happened in a while.

I need to clean. House guests arrive today.

The toddler is so excited about cleaning, she's trying to drag me by the hand to get going.

But I just can't wake up.

Sitting with the computer is about my only speed today.

I need to wake up. I should eat something. Possibly starting with 5mg of steroids.

Some notes:

1.No weight gain from the sugar. In fact, I lost some water weight I'd been retaining.

2. Watched the Nutcracker live with the toddler last night. So adorable. She wore her fancy dress-up dress and danced. Really special night for us, something I will always remember. Her sense of wonder was precious. She watched the whole thing, it held her attention even though it went way past her bed time.

3.The cookies... Butter to flour ratio matters in humid weather. The proof is below. The lemon sugar cookies spread easily, the molasses were all uptight about it. Next time, more butter for them!

What Do I Need?

2011-12-20T04:18:00.000-08:00

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.

Hoarding

2011-12-19T08:05:00.000-08:00

I am currently surrounded by sugar (and I like it). The cookie baking has begun in earnest as of today. We will be boxing goodies up for neighbors and mailing packages to family. I've already made three different cookies, one more recipe and I'm done!

The thing most people don't realize is that the weather affects baking. Whereas I made centerfold gorgeous molasses crackle tops on Saturday when it was snowing, today, the same recipe yields less attractive models just because it's raining and humid. Like how curly hair frizzes in the rain. Same scientific principle. Boo science.

This means in between blogging, I am running to the stove to use my cookie whacker to whack out the frizz. Yes, I have a cookie whacker. Yes, it's totally a professional term.

Okay, so maybe I'm a little nuts about the cookies. However, keep in mind these inspire hoarding behavior in people. Which is as close as I'll get to being a rock star.

Here are the results of today's cookie whacking:

10mg updose was a success. I didn't get a ZOOM of energy but I had steady, even energy all day. I was kind of hoping for a big ZOOM like a good little addict, but normal was nice too. Didn't feel adrenal at all, which, if you have been following along at home, you know the day after exercise has been an issue for me. Not so with 10mg on board.

Today I'm feeling a little hung over from the carb load yesterday. I fell victim to the 'you ate so good that surely a piece of cake at 11pm won't hurt' ploy. Food is so evil that way. Also, those cookies were so picture perfect, I had to partake.

The Road to an Updose

2011-12-18T06:08:00.001-08:00

One thing I wanted to write down before I forget it happened was after the Wednesday work out, I was sneezy and kind of flu-ish the next day. Similar to what happened when I accidentally worked out for three hours that one time. Just really run down.

So I worked out again Saturday. Not because I wanted to or felt up to it, but something needed to be done to change the path my body was on. Which was one of sugar supernova explosion and Oompa Loompa salt bloat.

It's funny how I can eat my weight in sugar and it's therapeutic, but then I can barely have any and I feel like I'm being stalked by a ninja named Diabetes. Who wants to do the three year death* move on me.

I don't know.

We had Thai food at a mediocre Thai restaurant. I am super duper salt sensitive anymore and really have to watch salt intake (except for those times I need extra salt to stay upright--I'm just full of contradictions!). I don't feel that I ate all that much, some chicken satay, a few lettuce wraps and some wonton.

Maybe they used MSG or I was reacting to something else in the food? Whatever it was, it compounded the fatigue.

After that, I propped up my bleary eyes to bake cookies and make turtles, which involved heavy sampling of the mini Milky Ways.

At that point, I'd already started drinking lots of water to flush out any extra salt, but the sugar hit me hard for some reason. So I put on some music and bopped around the house while the cookies baked in an effort to sweat it out and give the sugar high something productive to do.

I couldn't do squats as I was still sore from Wednesday. I had changed my squat technique to target my hamstrings better and it was almost too successful. My abs were also pretty sore still as I'd added 10lb weights to my routine. Just because that's what you do when you're chronically ill and haven't worked out in a while, amiright? There's no way that's ever a bad idea!

So between the bopping and a high impact day with no time to rest, by the time it was all over, I had collapsed on the couch. The hubby covered me with blankets and I just lay there for a couple hours, trying to get warm. I was D.O.N.E. Stomach pain and the adrenal gang came to beat me up.

Then I had an asthma attack because surprise! The inhaler was empty and I didn't notice. Who knows how many doses I missed? Check stupid in your dictionary to see a picture of me.

The asthma made it so much easier to swallow a 10mg updose Sunday morning.

*Three year death...maybe I'm mis-remembering the name but it's a sequence of (mythic?) martial arts moves that causes death years later.

Sins, Pockets and Fatigue

2011-12-17T03:15:00.000-08:00

Since I'm down to just one pair of workout pants that fit, I bought a new pair from Costco. They don't try to fall down, and supposedly have a key pocket, but I've been feeling myself up for ten minutes and can't find it. So now instead of holding up the waistband, I'll be searching for that damn pocket.

The girl feeling her own ass, is just me looking for a pocket I paid $20 for. It's not a come-on, honest.

Friday continued to be not as much fun as Wednesday. Still tired. Abdominal pain, back pain and reduced appetite. We mostly stayed close to home as the Early Intervention teacher came to our house for the last session of the year since the preschool closed for the holidays.

Which meant deep cleaning. OMG. I spent two hours in the toddler's playroom. She's usually pretty neat, but she's going through another Tasmanian Devil phase. We can't turn our backs on her or she'll set something on fire or douse it with water or cut it with scissors or utterly destroy it. So, basically, I filled a garbage bag, hand sorted tiny little pieces of millions of toys and decided we don't need anything from Santa.

Except maybe a maid. Or some kind of toy nanny robot that gives a mild electric shock once a certain threshold of mess is attained.

By the way, she cut her hair the last time I dared to blink, so we will be going to the hairdresser to even it out. Thank goodness she has curly hair, it hides many many sins.

The Down After the Up

2011-12-16T05:40:00.000-08:00

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.

Wednesday Win

2011-12-15T06:42:00.000-08:00

Wednesday was the best day yet. Really good energy overall. Did not feel like I hit the wall--energy was well balanced.

So I did 80 squats, 30 push-ups and some upper body weights.

After that I kind of hit the wall. Got tired and weak, but by then it was bed time.

I will be curious to see what happens today. Will I have the post-workout adrenal tantrum with GI symptoms? Or not? If not, that is probably a good sign.

Interestingly enough I read a chapter from a book on how exercise impacts hormones and weight loss. Excellent read. Apparently, exercise demands cortisol, and, if your HPA axis is wimpy, that could be a problem. So I begin to understand why these workouts put me in the pit of no energy, I'm not able to respond with adequate cortisol production.

I always thought I was just too tired to exercise, not that I was failing to produce the hormones my body asked for in response to exercise. Tomayto, tomahto, but the distinction was an insight for me.

So since I last posted... Christmas was cancelled. Then reinstated. The chaos is driving me nuts and I've backed off on the baking I had planned. These people change their minds way too much for me to be killing myself in the kitchen.

Rush Crush

2011-12-13T12:28:00.000-08:00

Tuesday was better energy wise. Still had flank pain and some fatigue, but it was not as prohibitive.

I would say I'm similar to how I felt right after stopping steroids in June and I am trying to work up the will to stress dose this weekend. Just 10mg so I can function after the tremendous crush to get everything done on very short notice. It's just I hate steroids. Even if they will help me.

Experienced normal hunger and didn't know what to do with myself. Truly, it's been so long, I wanted to poke my stomach and tell it to shut up, why are you talking to me? Instead, I fed it.

Spent the day mostly prepping for Christmas. OMG so much to do. But I think I can finally stop living at Target. I was starting to believe it would just be more convenient all around if I took some of their bedding, made a nest with crib mattresses and just camped behind the holiday display.

Now it's time to segue into the baking portion of the 2011 Holiday Olympics. Two kinds of pies. Four kinds of cookies. In quantities to cover 40 people. This happens to be my gold medal event.

I also worked. Agh. Crazy night. Some safety issues with the kids. I brought some stuff up to the director and will be talking to the regional director for the program as well. Got home and was wiped out. Heavy limbs and weakness joined the general background fatigue.

Then the oddest thing happened, I ate and ate and ate. Huge carb load and felt fantastic. So I wonder if maybe the blood sugar is just running low sometimes? The strange thing is, I ate a good amount yesterday and increased the carbs with potatoes. There was no reason to need a big carb load feedbag like that. I don't know what it was, but it left me very pleasantly buzzed.

Or maybe my body is starting operation regain? I've noticed it's hard to maintain weight loss due to illness, although I've held off all but two pounds of it so far.

The Monday Report

2011-12-13T04:42:00.000-08:00

Woke up super tired. OMG. Horrid fatigue. It's like a Dementor trying to put my Krebs Cycle in Azkaban.

(That may not make any actual sense, but it sounded so good, I had to leave it.)

Immediately abandoned any notions of exercise as foolhardy.

Took the toddler down to lunch with hubby and then to poppa's for Xmas cookie baking and decorating. She ate non-pareils by the handful while I tried to work on an ebook project.

Came home and decided to walk. It was a balmy 40F, so why not? Except it was actually a more frigid 20 eff this sh*t something, but hubby and I went anyway.

Then the toddler and I went hard core Xmas shopping while the hubby worked on the guest room and bath. Christmas this year is on meth and Red Bull. It's in full frontal assault mode and we're just short on elves at the moment.

The toddler has an advent calendar. Every day she counts how many days left to Christmas and I get this sinking pit of horror in my stomach as aaaaaaaall the things that aren't even close to being done start running through my head. I hate that farking calendar.

So for two hours, we traipsed from Kohls to Target and back. As of yesterday, the extended family Xmas is this weekend. (Along with a college graduation.) We were nowhere near ready but I think I pulled it together. (Oh God, I hope I didn't forget anyone or anything.) Now just to do all the baking I'm expected to produce.

The pisser is not all the presents I ordered (last week-I was working on it!) will arrive in time. Some people will get IOUs. This New Year's Eve wedding is mucking up the whole holiday season for the family and causing hard feelings. Do not recommend. Not a good way to start off with the in-laws.

Fortunately, I was pretty awake and alert in the evening. WTF is that about? I'm not the only adrenal person who experiences that. The adrenals did begin to ache with the shopping but once I finally stopped for the night, it was fine.

Meh

2011-12-12T04:23:00.000-08:00

Sunday was bad.

Sunday kicked my ass.

Major fatigue.

I even went to bed super early the night before!

We made some minor adjustments to our plans,but otherwise went on with the day.

Since we are crazy mental people, we have decided to repaint the guest room and bathroom 10 days before the guests show up.

Which meant I took the toddler to church (hubby dropped us off so I didn't have to drive) while hubby worked on the rooms.

Then we went to grandma and grandpa's house so the toddler could go cut down a Christmas tree. Under the guise of keeping grandma company while she baked cookies, I stayed at the house and rested. I just was not sure I could handle walking in the bitter cold.

The hubby already had his hands full with the toddler not wanting to walk in mud and my family trying to saw down an already cut tree--complete with angry swearing--because they are special like The Griswolds. Who needs a fading wife doing the sad zombie shuffle in the snow to make things even more annoying?

At least the hubby can laugh. Picture three grown men trying to saw down a tree and completely failing to notice it is no longer attached to the ground. Then they get mad at each other for not doing it right. And my husband is the only one who can see it's already been cut..by virtue of the large freaking pole holding it up and the rope attaching the tree to the pole.

I am trying to push myself to do more. The fatigue isn't going anywhere, but life will sure as hell leave me behind. So I'm trying, but I think it was a good call to avoid the tree farm.

No GI upset, but serious fatigue and sharp flank pain. Plus freezing cold all day, just couldn't get warm. Finally perked up at night, just in time to go to bed. Argh.

Last but not least, I've been asking random internet strangers if I look tan. Because the hubby and I can see the color change, but I don't know if it would be obvious to anyone else. I'm not outside the range of normal.

However, I have had to switch to a darker make-up base, which is pretty objective evidence. By the time your usual face paint no longer matches your skin, something is different.

I am curious to know what it could be. Last time it was transient. Will it be the same this time?

Nutella!

2011-12-11T04:21:00.000-08:00

The farmer's market Saturday was interesting. They are really cheap with the Nutella. The hubby makes better crepes.

In an effort to be good, I had the crepe with ham, eggs and cheese and only tasted the Nutella one. They were cheap with the ham and eggs too. One egg. A transparent sliced of ham. I'm not sure I saw any cheese.

$18 we paid for that.

We had a good time despite the crepes being a bust. Picked up some fresh veggies and fruit. Bought some carrots simply because they were as thick as my wrist. Veggies on steroids.

Energy was rough in the morning. GI upset arrived in the afternoon, but was maybe milder than it's been. Some back pain. I took a nap before I felt ill, so maybe that helped. Who knows?

Only ate the crepe and a salad the whole day. I think because I had cheesecake and falafel late the night before.

We were supposed to share the cake, but then the hubby whined about his long lost love Tiramasu, so we got two pieces. Except the toddler hates cheesecake.

Don't you hate it when you're supposed to be sharing cake, but you get to eat the whole thing?

Yeah, me neither.

Although, truth be told, the cheesecake wasn't really worth the calorie bomb.

Don't you hate it when junk food lets you down?

Yeah, me too.

Wedding

2011-12-10T04:58:00.000-08:00

I have three weeks to:

1.Get in shape for this New Year's wedding deal.

2.Re-learn how to walk in fancy heels. Being a sick-at-home-mommy has not required much dressing up.

3.Avoid re-rolling my ankle while re-learning how to walk in fancy heels. This ought to be good. I can barely stand in the damn things.

PS. See the picture? The swelling is pretty much gone now. I can still see a bit on the left, but I'm close to normal.

4.Find something to wear. Of the items in my closet, I'm in between too big and too small. I like this dress and this dress but can't afford either (unless maybe they go on sale at 90% off after Christmas, please Santa?). So I think I'm going to try and thrift it.

Although I am tempted to go in sweat pants because my fashion standards these days only require the toddler to look cute. Who gives a sh*t if the mommy wears the same too-big sweats three days in a row? That cute panda sweater the toddler is wearing is so damn dazzling no one notices I have to hold up my waist band as I walk (now up to three work out pants that are too big, yet I am still super fat somehow. The laws of science suck.).

Exercised Friday. Wonder what Saturday will bring? We are having a 'family adventure day' and going to the big farmer's market. The hubby has promised marvels such as Nutella banana crepes.

If I eat 50 or so of those suckers, maybe the too big stuff will fit in time for the wedding reception.

The Problem With Exercise

2011-12-09T04:42:00.000-08:00

Twice now the day after exercise, I've had some kind of adrenal flare. Yesterday, I thought I was going to throw up and had other active GI symptoms.

The hubby said, "I get what you call sick every time I eat out."

"Yeah, but you don't get hit with weakness after."

That's the difference between adrenal whatsit and bad Chinese food. It's not a purge, it's a symptom of something wrong in my body.

This is why he gets texts to keep the phone near by and, by the way, fast food franchises are cooking dinner tonight.

I felt like my BP was pretty low. Still have not replaced the BP unit, but the fading lightheadedness is pretty familiar. Also stomach and back pain. Went to bed and slept for a couple hours when hubby got home.

The whole thing really bummed me out because, up to that point, I had felt the day was going to be awesome. The sun was shining. We made cut out cookie dough (the regular diabetes inducing recipe, none of this healthy but tastes like sh*t stuff). I mopped the floor. Got some work done.

The toddler and I had agreed to take the black lab for a walk after preschool.Then we would bake cookies.

Twice now I have promised cookie baking to the toddler only to hit the wall. I need to stop making any promises in advance of an event and give myself an exit. Also I think the dog is pretty ticked about us saying the word walk and not pulling out a leash. She keeps looking at me with big sad eyes.

But we baked the cookies at least and the toddler was able to hang out with her friends and decorate them. Which is what counts.

Betwixt and Between

2011-12-08T04:30:00.000-08:00

My skin color has changed. I am 'tanner' than I was. This has happened before and is not necessarily of any significance. It could be I finally got my persistently low iron levels up enough to have some color. Usually I'm ghost white. Now I look like a ghost whose experimenting with self tanner.

Same old same old on the fatigue. I have moments where I think it's going well and moments where I wonder why I thought that.

Still trying to work out. Which means sometimes all I do is put the shoes on, others I actually do something.

Sometimes I have strength during a work out, sometimes I have to sit down before I fall down.

Blood sugar is fine until it's not. There's no rhyme or reason to it.

Just gray, no black and white.

The weight loss has stabilized (actually not happy about that, but it's a good overall sign, right?) and my mental focus is better. I've been able to work on some projects that I couldn't focus on previously.

My ankle is healing beautifully, however. I'm going to attribute that to the pylometric workouts and the many many squats I've done on my tippy toes. It's still bruised and a bit swollen, but strength seems to be normal. I am not jumping on it, but have done both-feet-on-the-ground squats. Also, doing some PT type stuff to help the joint.

My back is not doing as well, although I expect it to be fine eventually. My chronic neck pain was exacerbated pretty badly from the fall and my spine has sore spots. Hubby has been trying to massage out the kinks, but it's been a difficult-to-resolve flare up.

I am still alternating Advil and Tylenol for the pain. Believe it or not, going to bed is worse. Instead of relieving postural tension, I get fire and ice type pain all through my upper back.

I can be pain free. Really. With massage and strength work such as push-ups, but this is bad enough that I don't dare do any push-ups.

Still have the Crayola brand tramp stamp on my back too.

For anyone wondering WTF I did to my neck. About 15 years ago, I landed off a raised mat in karate helping someone practice opponent flips. I snapped my head back right into a concrete floor. Ever since then, drivers really like to rear end any car I'm in (no, I am not always the driver either). So insult added to injury equals never ending neck pain.

I'm kind of not kidding when I refer to myself as Amelia Bedelia.

Patient Friendly Steroid Tapering for HPA Axis Suppression (aka Secondary Adrenal Insuficiency Due to Steroid Use)

2011-12-06T05:59:00.000-08:00

All too often the only tapering regimen offered to patients whose HPA axis has been suppressed is one single am morning dose.

For the majority of patients this is probably fine. Their HPA axis probably can't wait to wake up.

For me? This is a nightmare.

If you are suppressed and tapering is not going so well, here's my dream tapering regimen. One that should minimize pain and maximize energy.

Oh yes, standard disclaimer: Not a doctor and not pretending to be one either. Follow advice on this blog at your own risk.

1. Switch to hydrocortisone. The half life is shorter, which stimulates the HPA axis at night. This is key because recovery will be hindered if steroids are in your system 24/7. The brain needs to be steroid free at night in order for the HPA axis to begin to wake up.

2. Split dose. The bulk of the dose should be in the morning with a small boost around noon. Just to be clear, this is NOT what patients with permanent adrenal insufficiency do. This split dose is designed to keep patients upright during the day while also allowing the steroids to be out of the system at night per #1.

3.Over time, slowly take that noon dose earlier and earlier until it merges with the morning dose. Start with 11:30, then 11, 10:30 and so on to tolerance. Try changing the time every 2 to 3 days and see how it goes.

4.When you can get through a whole day with just an am dose, you can start to cut pills. Up until this point, just moving that noon dose has been your taper.

5.Slow and low is the name of the game. Taper by 1 to 2.5 mg, no more. When your HPA axis is up and running the tapers can be bigger and faster, but until then, the slower and lower, the better. The turtle wins this race, not the rabbit.

6.Whenever you feel good, that's a sign it's time to taper. Feeling good means your body is producing cortisol to fill the gap left by the previous taper and it is safe to taper further.

You don't want to taper before your body has adjusted, that's a brutal thing to do. Going too fast can also put you in the hole. Looking back, I realize I frequently flirted with an adrenal crisis by tapering too fast and underdosing when I had problems. Don't do that.

If you listen to your body, it will tell you what you need much better than any physician or blood test can.

7.Don't taper in the 10-12 days leading up to a menstrual cycle. The hormonal changes can be hard on you when you're suppressed. Now, if you go through a cycle and it's no big deal, then feel free to experiment, but watch yourself closely for signs of strain.

Also avoid tapering during especially busy or stressful days. The day you tell your spouse you want a divorce, for example, would not be a good time to taper.

8.Increase the dose when you are sick or if your parent dies or during any other stressful event. You can wait until your body tells you it needs the steroids, you don't have to make a preemptive strike. Your body will very painfully tell you when it's not making it.

Keep steroids handy so you can take them the second you hit the wall. Within an hour you should feel better. If not, you either need more steroid or the adrenals are not the problem and it's something else.

As for how much to take, well, there are no guideline for stress dosing in the midst of HPA axis suppression. Most docs will not give out any information under the belief that stress dosing is not necessary for suppression (it is) or will pull from the literature on patients with permanent adrenal insufficiency, which does not reflect the core goal of stimulating cortisol production. So you will have to experiment because, with suppression, the goal is always to take as little steroid as possible.

Will an extra 5mg do it or do you need to double or triple the dose? Early on, this will be very hard to decide, but your body will teach you the rules it's going to live by and you'll eventually know exactly what dose you need in various scenarios.

The nice thing about suppression is, if the dose isn't right, your body will cease to function until you take more steroids. There's little room for misinterpretation. Can't get out of bed? Take 5 more mg!

Don't Got Much

2011-12-05T11:16:00.000-08:00

It's a slow news day over here at adrenal central.

Weight loss seems to have stabilized, although we'll see since I'm still not eating normally.

Did a slow motion elliptical work out last night under the theory that my will is stronger than my body.

I am being punished today with active GI symptoms.

Toddler has the boogies of doom, so sleep has been scarce the last few nights. I like to think that's why I'm so tired.

I tried to get the hubby up to handle her, especially the night after I fell down the stairs, as I was pretty sore, but he just won't wake up. While I wish I could sleep like that, it's probably for the best that we aren't both dead to the world. Or else who would find the toddler's lovey at 2, 3, and 4am? Or clean her nose? And check her for fever?

We took her to breakfast with Santa and I took a million pictures. I am trying to get a good picture of her for Christmas, but, unfortunately, she's going through a phase where, if you tell her to smile, she scrunches up like Santa just launched hot wings and beer farts right in her face.

Of Inflamed Adrenals and Saturday Sleeping

2011-12-04T04:39:00.000-08:00

I got a comment yesterday that I wanted to address before we get started:

How did you manage your back pain? Inflamed adrenals? Am experiencing the same type of pain during tapering. Just called my doctor and she said to go back up for several days til pain subsided. Why do adrenals become inflamed during withdrawal?

There is no recognition of adrenal back pain in medicine. Literature only refers to flank or abdominal pain and doctors even poo-poo that. Patients diagnosed with Adrenal Insufficiency routinely experience pain in the back, but are dismissed by their physicians. It's sometimes a topic of WTFBBQ? discussion on forums.

The inflammation in my adrenals has been severe enough that I was acutely aware of their location in my body and could have probably removed them myself if I had to. With a spoon. Which was often a tempting idea. It has always been a very specific kind of pain for me. Not one physician has believed I could feel that or that it was adrenal.

So you are ahead of the curve with someone who believes you. 99.9% of physicians would say "that's not adrenal."

I don't know that anyone has ever offered any kind of explanation for adrenal inflammation/pain. However, if you are suppressed, things atrophy. It's like being on bed rest for a month and then trying to run a marathon with no notice. It's gonna hurt.

If you are the same commenter who was being treated for adrenal fatigue, this is the biggest argument, in my mind, against adrenal fatigue as a valid diagnosis. The steroids prescribed don't "rest the adrenal glands", they suppress the hormonal feedback loop and turning it back on? Is a bitch.

I agree that you should increase your steroid dose. Significant, continuous back/flank/stomach pain upon tapering is a sign that you've gone too fast and your body is not ready. However, intermittent pain may just be a transient adjustment period or a sign of things going down hill--tough to say. Sometimes you have to play it by ear.

But I do think the advice to increase your dose was good. Are you tapering low and slow? Taper by just 2.5 or 1mg at a time. Then wait 7 to 10 days or until you feel good to taper again. Feeling good means your body has adjusted and it's safe to taper, although note that tapering usually makes you feel like crap for a week or so. (By the way, I'm not a doctor, so follow my advice at your own risk.)

On to today's post...

I've never been one for tattoos. Too many moles and freckles for that.

But now I have a tramp stamp in the shape of a Crayola crayon box.

Ba-dum-bum.

What? The hubby laughed.

Sore, sore, sore. I don't recommend a fall like that. Ran out of Tylenol and Advil doses which meant I was up at 3am, hurting too much to sleep.

Found out that rug burn stings in the shower and pretty much any time you touch it.

Ate a huge lunch Saturday--falafel, salad, cake--and then nothing.

Slept the rest of the afternoon. Unable to wake up. We were supposed to go grocery shopping but I pushed it off until Sunday. Made myself go to the movies with the toddler. Don't want to miss her firsts and hubby already took her to Happy Feet without me.

Keep in mind, this is the kid who has required sound reduction headphones and screamed non-stop at her first movie ever (we left). The she cried through her first kid concert. So pretty big sensory milestone here. Especially considering Happy Feet was 3D!

Unfortunately, The Muppets movie is terrible, although it was a nice touch of nostalgia to hear The Rainbow Connection again. Remember that song? That was major when I was a kid.

Hitting the Bottom

2011-12-03T05:05:00.000-08:00

I fell down the stairs Friday morning.

The toddler left her crayon box on the steps because God only knows why. I didn't turn on the lights and didn't see it.

I don't think anything is broken, but I'm pretty beat up. My left arm is has a foot long swath of rug burn that looks to be turning into a bruise.

I tweaked my ankle somehow so it's gone backwards in healing.

I don't remember hitting my head, I thought I stayed on my back, but there's a red welt above my temple.

My entire low back is one red welt, swollen and puffy. My back smashed the crayon box into smithereens.

Not pictured, all the little pieces of plastic trailing down the stairs.

The toddler was upset because the box broke. "I'll never color again," she sobbed.

I was in tears myself. Not just pain, but falling makes the fatigue worse. I don't need worse. It's the absolute last thing I need.

Spent the day resting, just couldn't rise above that fall, wimp that I am. Was shaky and unable to get warm for several hours. Appetite was good for breakfast and lunch, but then disappeared at dinner. Lots of heaviness in my limbs from the fatigue.

Just Doing It

2011-12-02T03:22:00.000-08:00

I made 'paleo' cut out cookies for the toddler. Not my best experiment, but she was happy. The true test will be if she eats them tomorrow or not. I'm thinking not. Too much honey, which I had already reduced from the original recipe.

Those are supposed to be Rudolph and some trees. It was harder than I thought it would be to assemble the reindeer. That's what I get for thinking I was so clever to use cranberries, pecans and dark chocolate for decorating. The chemical laden version of this cookie uses M&Ms and chocolate covered pretzels. And looks perfectly lovely.

Is there a metaphor in there about beautiful poison?

Anyway...

We've also been working on a button ornament. Dual purpose holiday craft and fine motor OT. It's turning out rather cute in a 'only a mother could love it' way. Good thing I'm the mother.

I always try to have some kind of craft/activity going on around the holidays. The button ornament was our Thanksgiving project. Christmas Day we'll have a pop-up cardboard castle that will need to be painted and decorated. That will keep us busy.

Felt pretty rotten most of the day, Thursday. I ate, but got super loopy anyways. So I ate some more. And then more. Finally, the food cooked in and I could get up off the couch. Four hours later than when I'd planned on baking those cookies, but it was the best I could do.

Trying

2011-12-01T04:51:00.000-08:00

Wednesday went.

Trying to get as much done as I can now since I don't know how I'll feel later. Do what you can while you can.

Ran to the craft store for stocking stuffers and styrofoam cones which will be used for Xmas tree appetizers (you use toothpicks and fruit or cheese, it's cute and easy). Felt like I was going to fall over, but just gripped the cart tighter and ignored it.

Making menu plans that minimize work. Luckily the hubby does a lot of the holiday cooking. In his culture they have fish, kidney beans, split peas and potato salad for Christmas Eve dinner. I happen to love beans and peas, so this meal works well for me although other people find it...odd.

Then he wants to make Nutella banana crepes for Christmas breakfast. Plus, he'll do dishes. So not too much on me for the big holidays. Yes, he is amazing. (Further proof, when I told him we could put a porthole in the floor to finally make a laundry chute, he thought that was a great idea. No really, people do it.Nowhere near as a strange as it sounds.)

Presents are mostly done. Need to finish the calendars featuring the toddler and pick up gift cards. Oh and mail Christmas cards. Not to mention thank yous from the toddler's October bday. Whoops.

Taking naps every day, which helps immensely. It gives me a couple hours where I'm not dog tired.

My GI system is making death threats, but not following through. So long as nothing comes along and stresses me out, I might escape unscathed.

Not eating much but trying to follow a rule of eating something at every meal time. The lack of appetite makes for an odd diet. 2 hardboiled eggs, a slice of cheese, cottage cheese, a bite of chicken. Back to the surreal reality of forcing caffeine consumption--that really is the strangest thing to me.

On the upside, I quit steroids cold turkey and am still standing.

And So It Begins

2011-11-30T07:50:00.000-08:00

I see that the pumpkin recall made national news, including stories questioning the motives of companies that wait until no one's paying attention to announce problems.

I wonder how the CEO of our grocery chain spent his holiday? Does he have small children? We spent it worrying about getting sick from food that wasn't safe to eat, with no information on potential health effects.

Jerks.

Next year I'm making my own pumpkin.

Assuming I ever get out of steroid prison.

Today I am tired and the pain of withdrawal has started. Advil and Tylenol have allowed me to get ahead of it and I hope it abates quickly.

Last night, I had the fiery pain in my stomach and back and felt like I was going to be sick. I went to bed and things stopped being weird.

Also having issues with keeping warm and shivering a bit. Can not express how much I love my heated mattress pad. Heaven on earth.

Yes, I can always take steroids.

But I don't want to feed withdrawal and if there's some relative adrenal insufficiency (the difference between being clinically normal vs. optimized) I don't want to delay recovery with more steroids.

There are patients with normal cortisol levels who go on to flunk tests like the ITT (Insulin Tolerance Test) so it does happen. However, the odds of me finding a doctor who would order any further testing and then the odds of flunking the ITT are so remote it would be like trying to collect lottery winnings when you live on Pluto.

At least I should lose weight, right? There's some consolation in that.

Daring

2011-11-29T17:46:00.000-08:00

I got brave and tapered by 10mg. Not sure yet if it is an improvement, but no muscle pain at least. Got a brief appetite surge, similar to the rice incident.

Depending on how I wake up Wednesday, I may not take any.

Might as well rip the band aid off fast. It's only been 8 days since I started and I kept the dose mostly subphysiologic, so hopefully that will help.

Pretty much planning on losing the month of December to the side effects of this mess.

Oh sheesh. The yellow lab, Minus a Brain, just horked up three huge piles of vomit while I was typing this. On three separate area rugs, naturally. Yay. Why does this always happen when the hubby isn't home? Gak. I'm already gagging.

Anyway, I keep saying mean things to myself about the whole thing. Like 'I'm an idiot.' But you know, at least I made sure to get the blood work. If I hadn't, it would've just made things worse.

So if I start losing weight again and all that jazz WTF does that mean? Is it just my weirdo withdrawal? Am I steroid resistant? The steroids have not had much impact on the asthma, which is how I ended up in the hospital in 2010.

PCP tells me to talk to the endo. Endo tells me to talk to the PCP.

Medicine at its finest.

Well at least I'm not the only one confused and frustrated.

On that note, I'm going to find some gloves and clean up vomit. Yippee.

AM Cortisol

2011-11-28T12:50:00.000-08:00

The am cortisol came back at 18.

Which is fabulous. I am actually thrilled. Wish I felt as good as the numbers indicate I should.

I will point out, remember in July the am cortisol was 13. So I clearly continued to recover and my system was not optimal between then and now.

Which I was saying that all along, however, this provides some evidence of the gap between clinically normal and real-life normal. Always good data points to have. Also, a good argument in favor of stress dosing.

The endo thought the steroids wouldn't be helping me in light of such a good am cortisol. However, they are. They allow me to eat and prop up my energy.

I didn't get into steroid withdrawal with the endo. I should have, but I'll be seeing them in a few weeks anyway.

The plan is to try and wean, which is terrifying to contemplate. I finally feel good and now I have to go back in the hole--the fatigue is lurking, waiting for me to open the door.

I'm waiting to hear back from the PCP what they want to do.

My sense is that a wean will put me back to not eating and no energy to function. Practically speaking, I will probably end up taking a booster dose of steroids on the days I work until we can figure out what is going on and come up with a plan for it. Not thrilled about that, but, at the moment the name of the game is keeping me upright.

If you have any ideas, I'm all ears.

Monday Brings the Pain

2011-11-28T04:36:00.000-08:00

Sunday was the flip side of Saturday. It started nice enough. I let the hubby sleep in since he was sick. Everyone was mellow. Then the toddler messed up her big toe pretty badly, so now we are both limping.

By the way, two other people I know took bad spills over Tday. Clearly, it is dangerous to even know me. If I were you I would ~~run~~ I mean walk away very carefully while holding on to a railing. Any running around me is bound to be fatal.

Then the toddler did her best to convince us we were such incompetent parents that blind wolves with rabies and lobotomies would do better.

Attempts at crafts devolved into tantrums with accompanying sonic booms.

I offered to read books. Play games. There were time outs. Loss of privileges. Discussions about making good choices. Nothing worked.

On the upside, she was drawing rainbows and people, which is a first for her and why she goes to OT. I was super excited and hung every single picture she brought me on the wall, absolutely tickled pink. She then pitched a perfectionist fit and stormed off.

Sigh.

Growing up is harder than I remember it being.

Thankfully, I had a stash of Christmas dvds that saved the day.

My ankle is still twice as big as it should be with limited mobility, but the pain is much reduced. Since my energy is better, this means I want to exercise. However, I am unsure as to how far I can push it.

So that's what's shaking. Off to call endo to learn my am cortisol was normal.

My Thanksgiving

2011-11-27T05:06:00.000-08:00

Saturday was my Thanksgiving. We had a great family day. Put up the tree. Did the Christmas lights. Hubby watched football. I read The Immortal Life of Henrietta Lacks in one sitting. I don't often get time to just read. When I'm adrenally whacked, I don't have the focus to read. When I'm healthy, I'm too busy to stop.

We rolled up brie and reduced sugar jam (black cherry) in ham. Wow, that was really good stuff. Roll your eyes back in your head good. (If you eat bread, a grilled cheese with this would have been orgasmic.)

You could say my appetite is back to normal. Food even tastes good again.

Despite the ankle and a developing cold, my energy was really good. Did not need to nap at all. Able to keep up with the day. Would have exercised except for, you know, the ankle.

Hubby is down for the count with the cold too. I have a light touch, he's hurting. I feel bad for him as I am really the last person to look to for sympathy.

So I think that means I have sympathy for him because of my lack of sympathy? Huh. Need to work on my sense of logic.

Still at 15mg. 10 in the am, 5 at noon. Seem to be okay for the day after that. I would skip the noon dose, but my body wilts. The fatigue sets in, my limbs get heavy and it's either bed or 5mg.

What's happening now is not what was happening before. If this is HPA axis suppression, it's a new version. One in which it feels like my body is not showing up for work.

I used to just take one am dose and, after an adjustment period, I would be fine (other than steroid withdrawal). That's a pretty big simplification of what I went through, but as bad as it was, I didn't feel like my battery died in the middle of the day. Like my body was just blank inside, not remembering what it was supposed to do or understanding what was missing.

I thought I was tired before? That energy was low? I had no idea. This is a new level of hot mess. There's no adjusting. My body is empty this time.

However, I am fully expecting my am cortisol to be fine and that I will be told to wean as of Monday. At which point I will pitch the idea of steroid resistance. As if anyone will listen.

Is there even a test for that?

I worry about taking steroids when I don't need them. I worry about not taking steroids if I do. I worry about missing something else.

Praying there's a clear signal one way or the other.

Black Friday

2011-11-26T04:15:00.000-08:00

Spent Friday doc hopping.

GI follow up to learn the polyp was a fundic polyp likely from GERD med use. Which is pretty much what the internet told me (and yes, I know, I was whigging out good about the growths, the growths of doom! So sue me.)

No signs of Barrett's, which is great news. Doc says science isn't sure if GERD meds prevent Barrett's or not, but, comparing my experience with my parent--20 years of nothing vs. 20 years of GERD meds--I have to say the meds seem to be winning.

If I get brave, I can have the surgery to tighten the sphincter if I want extra insulation from Barrett's. Which sounds like a nice idea, but I'll hold off until the adrenal demons are done with me.

Oh, and no more scopes. The post-op nurse must've been reading someone else's file because I do not need a colonoscopy. Or any endoscopies in the near future. Just lots and lots of Nexium and I'm good.

Then off for the ankle x-ray. When I woke up Friday morning, I could not put any weight on it for several hours. Between alternating doses of Motrin and Tylenol, plus a wrap and a shoe, I was able to put more weight on it, but not walk. Eventually the joint went numb which was a blessing.

Xrays didn't show a break, but I was put in an air cast because of the sprain. That has actually been very helpful. I didn't realize how much help just stabilizing the joint would be. You would not even guess that I had seriously considered picking up some crutches at one point, that's how great the air cast is. I even stumped around Target for a bit because I forgot it was Black Friday (thankfully, it was later and everyone had already been trampled to death). Hopefully it will heal quickly.

By the way, did you know they sell air casts to just anyone at drugstores? I could've saved myself a lot of time and money if I'd known that! Instead I took the two hour route to a prescription for one, which I didn't even need!

Note to self: Check the drugstores before the doctor's office next time.

Oh and if you want to make a doctor laugh, wrap your ace bandage too tight over your Santa socks so that your whole foot is covered with imprints of Santa.

Energy wise, Friday was the best day yet. A little tired but definitely 80% good and only 20% tired. I'll take it! Eating was finally more normal. Took only 15mg. Serious thumbs up.

I really think the family drama on Tday was pulling me down as Thursday was horrid. Really horrid.

And no, I didn't find the ankle stressful at all. I'm sure physically it was, but I had no emotional whig out about it. Broken bones that don't break skin do not worry me. At all. I've broken this particular ankle twice before, once doing almost exactly what happened on Tday. Plus I broke a rib and my arm twice.

Yes, I am a walking disaster.

The point is, breaks hurt, but they are not life or death. Sometimes there's nothing they can do anyway. Like with the rib.

I also remember the time the toddler put her hand in the car door as I was slamming it shut. The door latched around her fingers. I gave her a hug, checked her fingers and took her to lunch as planned while calling the doc to set up the x-rays. The mommy friends with us were horrified and I think they thought it was weird that I didn't freak out.

Do you know some of them avoided me after that incident? Look, she needed to eat if we were going to spend hours getting x-rays. Eating also distracted her from the pain, plus she got a happy meal toy, which, same thing. And, no I will not be running in circled and flapping my hands like a decapitated chicken. That doesn't help the toddler. Medical care was delayed like an hour. Oh the horror! Call CPS!

So that's how I handle suspected broken bones. Unless my femur is in pieces sticking out of my leg with copious amounts of blood, it is a non-event.

Maybe someday this adrenal unpleasantness with be a non-event too.

Except, I still flip out about blood. Not so much mine, but the toddler's. Gasping in horror and everything. I know it's not serious, but my baby bleeding makes me go DEFCON 5. So there may be no hope for me.

You Are So Going to Roll Your Eyes

2011-11-25T04:01:00.000-08:00

Thanksgiving was such a mess. All I can do is laugh.

First, I think I broke my ankle. Maybe. You aren't surprised at this point, right? Of course I would (allegedly) break a bone. The sidewalk looked even to me, but it was about 3" higher than the next panel. I rolled my ankle. Badly.

The entire joint is now swollen and I can't walk normally or do stairs. Initially, I could put weight on it, but not so much this morning.

I would kick something, but I only have the one good leg. Don't want to risk it. Not with my luck!

The real bad news is we have a New Year's Eve wedding invite. As in dancing. Staying in a hotel without the toddler for the first time in over a year. I knew there was a reason I hadn't bought a dress yet!

Hubby wanted me to go to the ER and I refused. Outright refused to be bothered by a maybe broken bone, which could be nothing more than a teeny tiny fracture that won't even require a cast (had those kinds of breaks before). I wrapped it, elevated it and told it to kiss my grits. That's about all I planned to do unless there were obvious signs of instability in the joint.

That's what I said yesterday.

This morning, the tune I'm singing is more.... Wow. This is much worse than I realized. I think maybe I went numb with denial there for a minute. Wow. Bad. Muscle strains from the arch up to my knee. Serious pain in the joint and it doesn't feel right. Will try to get an x-ray today.

After the ankle incident, we went home and saw on the news that the pumpkin in the pumpkin pie we've all been eating has been recalled. Don't eat it, they say. No information on what to do if it's too late for that. They don't know what the problem is but they do know we shouldn't eat it.

Great.

All my pies went into the garbage.

Some consumers have posted notes about diarrhea on the various news websites. So at least I won't panic about an adrenal crisis.

The thing is, my sense of taste has been off all of a sudden--food doesn't taste right or even good most of the time. I thought the pumpkin was funky, but everyone else said it was fine. So I just assumed it was me and my wonky taste buds.

On top of that I was exhausted all day. Just really wiped. I don't know if all the activity Wednesday was haunting me or what. Don't know if I'm just still digging myself out of the hole and recovering from the last few weeks or if something else is going on. Don't know anything other than steroids are like an on switch.

Arrived at Thanksgiving and was comatose with fatigue. Couldn't even talk, just whisper like a lame-o. Had to lay down until the 5mg dose kicked in and then I could talk and function.

I have lost yet another pound, but managed to eat stuffing and mashed potatoes. The turkey tasted funny to me so I fed it to the dogs. Then I fell apart again. It's like my battery just dies, so another 5mg and that seemed to do the trick for the rest of the day.

When it kicks in, I sit a little straighter and engage. It's really bizarre to feel that kick.

So I am doing better, but it's not perfect. Not yet.

One good thing, this has been the first morning I didn't wake up with bone crushing fatigue. That's a pretty significant change. Let's hope it marks the true beginning of more good than bad.

Thanksgiving Day Reading

2011-11-24T05:56:00.000-08:00

Slowly recovering and had hoped not to need more than 10mg, but ended up taking another 5mg. I've had energy deficits too big for the steroid dose before, but instead of taking more, I really wanted to try and out rest it.

Except I couldn't wake up still. Some of it is that I need one more night of good sleep to put the bad night of sleep behind me. I really do not handle lack of sleep well, some combination of newborn sleep deprivation PTSD and adrenal weirdness. After the 5mg boost...

Positive dance sign for the win!

*fist pump*

Fatigue was still with me BUT I zumba'd to two songs from Bette Midler's Christmas album. (MP3 download is $5 and well worth it!) Two whole songs! Without sitting down! Without heaviness in my legs! No, it was not the best music for Zumba, but it was a lot of fun trying!

I've also had a positive caffeine sign. Actually wanted my drug of choice yesterday: Coke Zero. I've not been able to finish one since 11/2. Have not even cared if I had caffeine (which for those of you who drink caffeine, you know how weird that is). Well, now I want it which is good even if it's not a good-for-me habit.

Then I crashed and burned. Just did too much, too fast. I need to slow down and rest or else I'll have to take more steroids.

Still, overall, a MUCH better day. Very thankful.

My gosh dang cortisol better fricking come back low. Or else my body makes NO sense whatsoever.

In the event that it's normal, I found an article on steroid withdrawal and the quote below seems pretty relevant to my situation. The theory would be I had the crisis due to long term steroid use and DUH! I need to stress dose. The steroids used to treat the crisis then triggered Steroid Withdrawal Syndrome which, in me, scales up to the umpteenth power. This is what you call 'can't win for losing.'

Full text of article is here: http://www.eje-online.org/content/153/2/207.full

"The form of SWS that we have described, characterised by anorexia, nausea, lethargy, fever, arthralgia, skin desquamation, weakness, postural hypotension, vomiting and weight loss, was recognised as early as 1960, although the exact mechanism of action is not clear, nor is its prevalence (3, 4, 7, 8). Suppression of the HPA axis by the hypercortisolaemic state, whether endogenous or exogenous, was initially thought to be responsible, until the axis was shown to be normal in these patients, with normal baseline cortisol levels (7).

Subsequently, Amatruda et al. demonstrated some suppression of the HPA axis in these patients but, importantly, serial plasma and urine steroid levels were within normal limits, and there was no correlation between the status of the HPA axis and the severity or duration of SWS (4). Hence the condition was attributed to a state of ‘relative adrenal insufficiency’ as tissues had been exposed to high levels of steroids for a prolonged period. It is thought that these individuals develop tolerance to glucocorticoids, such that the replacement doses used are inadequate to allow correct functioning of the central nervous system and other organs (3).

Tyrrell describes the possibility of a relative state of glucocorticoid resistance in these patients, effectively rendering them hypoadrenal (8). In more recent studies, a rise in the level of interleukin-6 (IL-6) has been linked with the acute form of SWS occurring immediately after surgery for Cushing’s syndrome in patients who were hypocortisolaemic, and a similar symptom complex was noted after infusion of IL-6 (9, 10).

Papanicolaou et al. found that even by day 9 or 10 postoperatively [for Cushing's], when these patients were on glucocorticoid replacement, IL-6 levels decreased but were not back to normal (9). Alterations in the concentrations of a number of other mediators have been hypothesised to play a role in the development of the SWS, notably CRH and central noradrenergic and dopaminergic systems, reviewed in more detail by Hochberg et al. (3)."

AM Cortisol

2011-11-23T04:52:00.000-08:00

Did the am cortisol.

Quick tip. If the blood is just not flowing. It's not your crappy veins, but rather a crappy collection tube. Ask for a new one. Preferably before you are stuck multiple times in search for the ever elusive 'vein with blood in it.'

This has happened to me so many times, now I know to ask for a new tube.

Gnawing hunger woke me up at 4 am and I was super loopy from what I assume was low blood sugar (why my body doesn't just tap into my copious fat reserves I don't understand). This was the first blood draw I tried to sleep through.

Because of the hunger, I held off on the steroids wanting to see how things changed with food. I fasted because I always convince myself I'm supposed to, and you never know what else is on the order that might benefit from fasting. So I staggered to the car, my head lopsidedly heavy and ate a granola bar.

That helped with the wobbling and general titl-a-whirl feel to the world, but the fatigue was still there.

Still I held off. Because I really do hate steroids. They are not without risks and problems. I would prefer to know I need them than to think I need them.

When the fatigue wouldn't let up (I believe this is an example of magical thinking because what exactly did I think was going to be different?), I did take 10mg as planned. We will have to see if that's enough. I do believe I have some cortisol production of some level. I don't know if I need a full physiologic dose or even daily steroids, but I could be wrong.

Lost 1.5lbs.

Appetite seems to be better now with 10mg. Fatigue is not as profound. I am still tired but am missing sleep and it could be I need more than 10mg. We'll see how 10mg day 2 goes.

Data Before People

2011-11-22T04:44:00.000-08:00

Going for an am cortisol this morning. Wish me luck. I have a hard time believing it will be normal, but my body has been weird before. The second that needle slips out? I will be slamming back Hydrocortisone like a sorority pledge in a jello shot competition. I fully expect the day to get better from that point.

We are now up to two cars that stall and don't start reliably and generally act like junkyard statues. One is an older Ford van and the other a quite new Honda, which we babysit for the parent living in the Caribbean.

No mechanic can find anything wrong with either car. As you may recall, we took the van to three mechanics trying to find a fix.

The van never malfunctioned for anyone but us. If it hadn't acted up for the hubby I would've been told (by the hubby) it was all in my head.

Same for the Honda. In fact, my default assumption when things go wrong with a car is that I'm hallucinating until it happens to the hubby too. Which it did with the Honda.

The mechanics rely on cutting edge technology that uses computerized diagnostics. They don't even have to lift the hood anymore. All the diagnostics come back normal, of course.

Which leads to the following exchanges:

"The car's fine, tests perfect. Bye."

"Wait, what if it stalls on the highway?"

"It's perfect. The diagnostics say so."

My question is, what happened to critical thinking? Or digging around in the guts of things to find the answer? How is it that a computers can so quickly usurp a first hand report?

I told the hubby, "This is just like medicine. They want to bring in computer models for diagnostics there too. Watch, we'll all be normal because the computer can't do math high enough for patients like me and the physicians, just as they do now with tests, won't go any further than 'the computer says you're normal'."

The hubby laughed. "Meanwhile we'll all be having heart attacks in stalled vehicles with a semi barreling down on us."

"Yep...unless... what if our cars are possessed by the maverick spirit of my late grandfather?" I tapped my chin. "He would totally do that to me. Maybe what we need is an exorcism."

"An exorcism?"

"Or...do they do acupuncture on cars?"

I'm calling it right now. The big trend for car owners is going to be complementary therapies where all those 'perfect' cars can find some help. Feng shui. Acupuncture. Past life regression for steel. Reiki for your ride. Gas with vitamins. Homeopathic car wax. The list is endless.

Meanwhile, I'll be looking up exorcism rituals.

The Push to Push

2011-11-21T05:22:00.000-08:00

I'm trying out a new blog name. One that doesn't make website filters choke. Possible other changes to come...

My current fatigue coping mechanism is the memory of everything I did with an am cortisol of 1 back in the late 90s.

I drove because I had to.

I showed up.

Exercise... was a disaster. Umm, let's just pretend I didn't write that.

Moving on...

There was no pansy-ass wilting. Granted, the symptoms are harder on me, but I also bet my am cortisol is higher than 1.

So when I think I can't do something, I just remind myself of all I have done and will do again.

Sunday seemed better. (Oh please don't let me jinx myself writing that!) Still tired but no nausea and reduced stomach pain. Had a 'positive dance sign' but had to sit down as the fatigue just pulled on me like an anchor.

I think I may have figured out the trigger. My family is being particularly whackadoo of late and some of it was not only directed at me, but dumped in my lap for me to fix.

Sometimes families suck and mine is pretty good at that. We have pulled back on our holiday plans, staying close to home, keeping things quiet and avoiding the people who are stressing me the f*ck out.

I am beginning to think that some things need to change and maybe we won't be doing every single holiday with these folks going forward. Time for less involvement, not more.

This is one reason why I had hoped the hubby's cross country gig would work out. Some genetic isolation would be welcome. However, it did not pan out. Which is good in the sense that there was a fatal shooting at his hotel during the interview--never a good sign when that happens especially if first responders are FBI and ATF, not local police-- and the town recently caught on fire requiring massive evacuations.

Pretty sure the second I set foot out that way, the apocalypse would officially begin.

Oh, To Be 11 Again

2011-11-20T04:22:00.000-08:00

I remember how I felt with an am cortisol of 11. This is not as good as that. Nor is it as bad as last year. I went back and read the posts. I'm better than that, or maybe I'm just bad in a different way this time given that, Friday, I had to lay in bed for several hours and pray I didn't end up in the ER.

Before things got dodgy, I called the endo and requested an am cortisol draw. The thinking is, if I am low now, let's document it in case I later gain ground. (Or lose ground as the case seems to be.)

They never called me back, which is unfortunate as things are much more serious than when I initially contacted them.

If I had to guess, I would say cortisol is below 10 but above 5. (Let's see if I'm right! What's your bet?)

The recovery feels very adrenal, but is it because I was on steroids and went through my infamous version of withdrawal or because I had a crisis? It's hard to know.

The weight loss makes me lean more toward a crisis. The duration of the symptoms makes me lean toward a crisis as well. It's been over a week, acute withdrawal should be gone by now. I should not be in fear of a crisis, but I am because my body keeps going there.

Friday was frightening. I am glad I held my own.

The other thought nagging my intuition is not a good one, but it's just my intuition, so we don't have to listen to it. Could this be some kind of cancer? All these growths? All these symptoms? Strange (for me) weight loss?

I've lost weight. Those pants I bought? The ones that fit me now? Don't need to be unbuttoned to be pulled down.

Then I think maybe we should check for diabetes. Although I'm not peeing and had a non-fasting blood sugar of 93 in late September (go low carb!). It seems unlikely and the PCP was not concerned when I brought it up, but, I don't know, it's just one of those gut things that nags at me.

There is zero family history of diabetes, on either side. I'm hoping those genetics are strong enough to counter the impact of steroids. Pre-diabetic I can live with, but diabetes scares the pants off me.

Can you imagine? Asthma, diabetes and adrenal weirdness all in one body? That would be a death sentence.

Before things nosedived Friday, we put up our snowflake mobile and did some light Christmas decorating. Already? Yes, already. It's a happy thing for both me and the toddler. We won't break out the big guns until the day after Thanksgiving,which is about as long as I can stand to hold off.

Some people even have lights up and we did our first light drive Saturday night. I don't mind people decorating early. I hate the Christmas before Halloween retail push, but people enjoying the season a bit early are okay in my book.

Saturday I was tired and doing the sad zombie shuffle. Had some stomach and flank pain along with nausea, but the other GI stuff, while continuing to threaten me, has calmed down--Thank you all that is holy. Dropped off cars at the mechanic, went out to a delightful lunch with the hubby, to the store, and then to bed. No appetite for dinner, but I managed to filch some of hubby's chicken wings... and then couldn't finish them.

e Patient White Paper Links

2011-11-19T08:10:00.000-08:00

Someone said the links in my post on the e patient white paper weren't working. Try these:

Copy/Paste into your browse: http://e-patients.net/e-Patients_White_Paper.pdf

Or check out the Google search results for e patient white paper.

Primal Hunger Takeover

2011-11-19T04:23:00.000-08:00

Adrenal Update: So, as I posted yesterday, things began to decompensate. Once I could leave the bathroom, I went to bed, turning the mattress heating pad on high as I was cold and could not get warm. The whole thing was very similar to the crisis but at about 40% power--no shaking, no vomiting, not the same intensity in the stomach pain.

Rest seems to have allowed my body to get ahead of the problem. I am trying not to take steroids as I want do an am cortisol draw to establish what is happening, but the endo has been so slow to get back to me, this may not be safe.

Will update more tomorrow. On to today's post...

The other day, I made some rice. A large bowl.

The next thing I knew, my body was dumping in a week's worth of butter servings and shoveling it down my gullet before I could say no.

Seriously, body? We're going to make up the calorie deficit with rice and butter?

What am I? Gluten free in prison?

What happened to cheesecake?

Or pizza?

French fries?

I'm all for carb loading given how little I've eaten lately, but plain rice? RICE!?!

Come on. I want to enjoy it at least. Just give me a few minutes and I can get us something better.

But my body basically looked at me like a feral animal and said 'Lucky for your dogs you made some rice.'

Oh.

OH.

*blink*

Meanwhile, the spoon never stopped shoveling.

When hubby came home, I said, "I made rice to go with dinner."

"What rice? There's not enough."

"No, there's a cup there. You need more?"

"There's not enough." He showed me the bowl and indeed, other than a meager spoonful, the rice was gone.

"Oh. Sorry. You can make more."

"You ate the entire bowl?"

"With a stick of butter." I gave a weak smile.

"And your pants still fit?"

"Actually, I'm still hungry."

So I had a pint of Ben & Jerry's Karamel Sutra. Because who the hell binges on rice?

I have my pride you know.

And no, no weight gain but no loss either. My appetite disappeared the next day again so...???

Adrenal Alert

2011-11-18T11:14:00.001-08:00

Once again...sick. Just not vomiting yet.

Once again...having a hard time getting a hold of hubby. He's at work so should notice soon that I called and texted. Oh, there he is now calling be back.

I'm not vomiting. I think this is a good sign.

But other GI symptoms are active. Plus light headed, weak and dizzy. Having a hard time not making stupid typos. Week. Lightheading.

Tomorrow there's a post ready that was before this moment. Keep that in mind when you read it.

The Link Between Severity and Attitude

2011-11-18T04:42:00.000-08:00

Updated: If the links aren't working for you, try these:

http://e-patients.net/e-Patients_White_Paper.pdf

Google search results for e patient white paper

I am currently reading the e-patient whitepaper which is packed with information on patients and the internet. The only complaint I have is the document won't allow any copy/paste making it impossible for me to keep track of pertinent or especially salient passages.

However, I did go through the effort to grab this graphic showing the relationship between severity of illness and patient attitudes toward physicians. As you can see, I have no skills because, despite trying, I can't get the size to be anything close to readable, but if you double click on it, you should get an enlarged image.

You can read more about it here starting on page 28. What is your attitude? Accepting, Informed, Involved or In Control?

The more chronic or serious the illness, the more a patient uses the internet the more likely they are to be an In Control patient.

I'm somewhere between Involved and In Control (which I would have more accurately labelled 'Wants Control But Is Ignored By Physicians' which doctors would probably prefer to label as 'Annoying Patients').

Salvador Dali Version of Normal

2011-11-17T04:49:00.000-08:00

The other night at work the teachers inquired, with some concern, about my 'surgery'. (Which was not surgery but it's too hard qualify all the exceptions that make up my healthcare and it's just easier to go with surgery.) They'd been swapping health information and stories and I got a little too comfortable with them.

"How did your surgery go?"

"They found a growth in my stomach and removed it," I said, shoving salad in my mouth as if I'd calmly noted it was raining outside. No biggie, right?

"Oh, my," said a teacher, hand covering her heart. The other teachers shook their heads.

I looked up and realized everyone was thinking cancer. Whoops. Minus 100 points on my communication skills.

"No, no it's okay. It's unlikely to be cancer. The problem was more that I had some complications."

"What happened?"

Oh shit. Shouldn't have said that. Now what do I say? Of course, I made it worse.

"I had an adrenal crisis the next day, which can be serious. Hard to live without a stress response."

That resulted in gasps of shock along with looks of utter horror and concern. These folks were so nice, they were about to drown me in sympathy. Even though I'm pretty sure they had never heard of adrenal glands.

"Don't worry. This is normal for me," I said, hastening to reassure them as I scraped the last of my food off my plate.

They just gaped at me, forks frozen in mid-air.

I backpeddled trying to fix the mess. "So ummm, how far along are you in menopause again?"

I honestly was surprised (and touched) at their concern, which just highlighted how strange my life is.

I'm so warped I think this medical stuff is normal.

Have you had a Dali moment?

PS: Seem to be finally eating. In very large quantities. Still having flank/back/stomach pain/burning and fatigue, but I packed in some serious calories at least!

The Usual

2011-11-16T04:23:00.000-08:00

I have lost another pound. I'm eating. I swear. There was even an actual sensation of hunger at one point.

Some burning in the back and abdomen--with strong intensity at times.

(Side note:Ran into another patient who experiences adrenal burning as opposed to pain. The ER kept asking me about pain and I kept telling them "It's not pain, I'm just on fire inside." The (completely impossible) mental picture I had? Was one in which the endoscopy had poked through my stomach and the acid was melting my innards. That's a solid 3 on my pain scale. I don't know, burning is just hot, it doesn't register as true pain for me. For comparison, steroid withdrawal muscle pain is a 7.)

Fatigue level was steady at 'I'd rather be in bed' for most of the day. Perked up a bit at night and my appetite came for a visit.

Spent the day dealing with extended family stupidity and it wore on me. If you think I'm crazy...you just haven't met the rest of my family. Like the hubby says, "Your family makes me look good." To which I always say "Your family makes me look good." And it's true.

Anyway, went to work and sat on the floor with a kid who can't walk, which was a low key gig for me. The other teachers were running around like chickens with their heads cut off. Glad I got a pass, but I decided tutoring is the more adrenal friendly gig and maybe I should take on another student.

I'm trucking along despite it all. Still have no idea what's going to happen next although I'm rooting for turning the corner.

Mixed Bag

2011-11-15T03:08:00.000-08:00

Well, Monday was not better. It was worse. At one point I began to fear I was heading for real trouble. I must have done too much on Sunday? I just really felt the need to keep living my life and do things that nourish me as a person as opposed to always being benched by my health.

So I went out to lunch with a friend and caught up. It went pretty well. I felt like I was safe to drive, which is not always the case. I was able to keep up with the conversation even though I lost track of my point a lot.

I thought, 'Wow, I'm getting better.'

Then I had a terrible time getting up. Did not sleep well. Had some muscle cramping, which is really weird as I've not had intermittent steroid withdrawal before. If that's what this is.

Finally felt up to making cookies with the toddler. Filled the CD player with Christmas music and we baked (well she baked and alternately danced). There are now 3 dozen cookies in the freezer ready for the holidays in case I don't feel well enough to cook on the exact date.

After that, I was wiped, but I had promised myself I would make a crock pot meal, trying to stem the tide on the take out. My palate has changed enough with low carb that fast food actually tastes like junk to me now. I can not face anymore bunless burgers from various junk franchises. It tastes like crap. (Exception to the rule: I still like french fries.)

I started shaking a bit and getting some back and abdominal pain. Tired enough to struggle with all the various recipe steps. I did eat. but it didn't help. Felt like my bp was low, but I couldn't check it, and hesitated to add salt as feeling low is not always the same as being low. The remainder of the day was conducted from the couch.

On the upside, I was able to make myself eat all three meals, the first time since 11/2. The hubby said I was much more talkative than I've been, and put in topic requests for football and industrial strength leaf blowers.

Perhaps that was why everything he said just bounced off my ears the other day? Because those are not things that interest me. Nor are they anywhere near my area of expertise. If they are your forte, let me know, I'll hook you up with your new bff.

The mixed bag of symptoms means I won't updose yet. It has to be all adrenal all the time before I'll take steroids, but the uncertainty gnaws at me. I never know if I'm doing the right thing. I never know what will happen to my body or what medicine will do to me next.

I remind myself I have steroids. Heck, the ER even gave me a prescription for Zofran so I don't even have to vomit! I don't have to end up in the ER again, but I still freak when there's weirdness. The crisis shook me more than I realized.

Some anger showed up yesterday as well. Anger that this was all preventable. None of this had to happen to me. This suppression never had to be the most severe and dangerous one I've ever had (even if the taper was the gentlest).

What my body is doing is not outside the realm of medical literature. It's not like no one else ever had this problem. It's not like this has never happened to me before either.

All it would take to save me so much pain and grief is one well read physician. Just one.

Withdrawal or Insufficiency

2011-11-14T04:41:00.000-08:00

It has been suggested to me that I'm going through steroid withdrawal right now and not adrenal insufficiency. That could very well be the case. I just don't have any of the muscle pain I attribute to withdrawal, but that doesn't mean it's not withdrawal.

If it's withdrawal, I should progressively feel better this week.

The only thing...I re-read my last several months of posts and wow. I've really been having issues with my appetite and energy. I always tell myself I'm doing great and then whine on here. When I read the whining, I can see how hard I've been pushing. I don't think it should be this hard.

I drove yesterday and was okay without extra steroids. Ate breakfast and lunch, but no dinner. Mostly felt okay. A little wiped and kind of cranky, but there's hope that today will be better.

Another Adrenal Crisis Patient with High BP

2011-11-13T19:10:00.000-08:00

November must be 'have an adrenal crisis' month. And not only have an adrenal crisis but do it with high blood pressure.

Go read the story. It's almost word-for-word what I experienced.

It's nice that the ERs thus far seem to be figuring it out pretty well, but I need an endo who understands it too.

Why is that so hard?

Question of the Day

2011-11-13T04:35:00.000-08:00

Today's question is: Do I take steroids so I can drive competently or try to do without?

After 12 hours of sleep, I feel okay, but I've only been up for ten minutes. How I feel now does not mean I won't hit the wall later.

Also, I may have overstated the bit about stuffing my face as I've lost another pound.

Apparently a granola bar, a sausage biscuit, a bit of salad and a low carb hot chocolate aren't enough to keep it together.

I'm going to try a lower carb smoothie this morning. With some Fage greek yogurt and cream to boost calories. And I'm supposed to do Mediterranean for lunch with a friend (hence the driving issue.)

I absolutely do not mind the weight loss, it's the vicious sugar lows I'm trying to avoid.

This Post Makes No Sense, Read at Your Own Risk

2011-11-12T08:43:00.001-08:00

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?

Steroid Withdrawal, Muscle Pain and Notes on an Adrenal Crisis

2011-11-11T04:52:00.000-08:00

My muscles are spasming enough that when I raised my hands to put mousse in my hair the other day, my pec spasmed until it sprained itself.

Yes, I am now beating myself up.

Then there are the sustained contractions in my feet, calves,forearms and diaphragm. If I hadn't had them before, I would be terrified. It feels like you're becoming a statue, trying to breathe through stone.

Thank God for Advil.

Made it down to 10mg. It's been a little dodgy. The hubby startled me and my body immediately became short of breath. It was weird.

Tomorrow, down to 5mg. Then we see how that goes. If it goes well, I'm stopping. Can not wait get off this poison.

On the adrenal crisis front, I corresponded with an Addison's patient whose BP skyrockets during a crisis. I am beginning to suspect patients must go low just before they die/start to die. I bet there's a significant adrenaline response initially.

Diagnosis of a Troll

2011-11-10T05:05:00.000-08:00

So I had a troll stop by. One with weak reading comprehension.

They diagnosed me with depression.

It's not like they commented on one of my more emo posts either. Or one of the over-the-top chatty ones, fueled by high dose steroids. No, they picked the post where I discussed the pros and cons of prednisone and hydrocrotisone.

Because nothing says depression like debating the merits of various medications?

I have to say, as crazy as my medical interactions have been, I've never once been diagnosed with depression. Nor do I think I'm depressed. Frustration and trying to find solutions/answers does not constitute depression. Fighting for better health is not depression. Freaking out when weird stuff happens to me is also not depression. I defy anyone to watch their body go apesh*t while doctors refuse to help and not panic.

If I thought Prozac or Xanax or hell, even pot would cure the asthma, the low am cortisols, the weakness, the vomiting, diarrhea and abdominal pain and the zig-zagging blood pressure, I would be on it.

The troll also scolded me to stop getting medical information from the internet. Dumb patients don't know what's good for them. Close your eyes, cover your ears and open wide for the damn Prozac already.

Listen, honey, pull your head out of your ass and hear this...

First, it's not like I'm getting my medical advice from Perez Hilton or those medbloggers who think patients exist solely to be punchlines on their blogs. The fact you can't recognize that is sad.

Second, I have taken college level biochemistry, anatomy & physiology, pathophysiology. An A in all courses (being sick with something no one understands is very motivating).

Third, I sat for a limited medical license from the State Medical Board, which tested me on those basics. I aced it.

See back when this first happened to me, we didn't have the internet like we do today. I had to go back to school and actually learn everything firsthand.

Thank God I did because I went right from my last class into another HPA axis suppression. (That, troll, is the "good reason" I'm not a doctor. If I had ever had the health to support such a rigorous career, I would've done it.)

Tell me, troll, if I'm depressed and dumb, how is it I'm the only one ever getting the diagnosis right?

Of course, I don't know everything. I know that, duh. The problem is medicine thinks it does when it doesn't. At least I do know enough to save myself. Can't say the same for medicine.

Medicine is profoundly flawed on multiple levels. Just the fact I had to go through 2 years of schooling in order to successfully plead for a simple am cortisol draw is evidence of that.

Someday you will get sick. Someday medicine will do to you what it's done to me. Someday you'll understand and you will remember your comment with shame.

It is just a matter of time.

ER Doc

2011-11-09T04:11:00.000-08:00

The ER doc and I had the following conversation last week:

Doc: "You should have taken steroids prior to the surgery."

Me: "My endo doesn't support that. They say I'm normal and don't need steroids."

Doc: "Not according to all the medical literature I've read."

Me: "I know, I've read it too."

What do you do when your endo follows one school of thought while your body follows another? I bring stuff up. I try to challenge thinking, but it doesn't go anywhere. We're stuck in this pattern of 'you're fine, but here are some steroids.' What is the end game of this pattern? Where's the plan?

My body is not going to dissolve into the ether. It's not going to stop annoying the sh*t out of me and the endo anytime soon. So, I don't know. Maybe we need a new approach?

Taper to date is as follows:

Monday-30mg HC split dose but all before noon (helped a lot, but felt like a little too much)

Tuesday-20mg HC no split

Wednesday-Holding at 20mg, no split.

Thursday-Down to 15mg, no split.

Sunday-Aiming for 10mg, no split.

Hoping to be steroid free by the end of next week.

Sooooo tired.

Hitting the Books: Various papers on Adrenal Insufficiency

2011-11-08T12:11:00.000-08:00

Trying to understand and slowly beginning to accept I probably did have some kind of adrenal weirdness. I still can't call it a crisis. A crisis is when you pass out and end up in ICU, right? Although I have found some references to people who were 'walking, talking' crises and I've walked around with an am cortisol of 1 so I guess anything is possible.

The quote below is the point I was trying to make about the high blood pressure. Given time, I would have crashed in a seriously bad way.

"Exhaustion and ‘hitting the wall’ Addisonians tend to rely on stored adrenaline to get them through events which are more stressful or physically demanding than usual, to compensate for the fact that our bodies do not produce the boost in cortisol levels that a healthy person could draw on. Then, when the adrenaline rush finishes, we ‘hit the wall’." (Source)

And there's this that speaks to the lack of hypotension...

"In contrast, patients previously maintained on chronic glucocorticoid therapy may not exhibit dehydration or hypotension until they are in a preterminal state, since mineralcorticoid secretion is usually preserved." Page 125 Harrison's Endocrinology

How an adrenal crisis might be different in Secondary Adrenal Insufficiency/HPA Axis Suppression.

“The hyperpigmentation of skin and mucosas that is typical of Addison's disease is not present [in Secondary Adrenal Insufficiency, suppresion of the HPA axis], since pituitary secretion of ACTH is inhibited.1,14,28 Some patients may exhibit hypoglycemia. Hyponatremia and hyperkalemia are uncommon because ACTH suppression has a minimal effect on aldosterone secretion.11,29 In severe cases, an acute adrenal crisis may occur (vomiting, diarrhea, fever or hypothermia, acute dehydration, hypotension, hypoglycemia, shock and coma), which is a life-threatening situation.”(Excerpt of Withdrawal from glucocorticosteroid therapy: Clinical practice recommendations from Jornal de Pediatria.)

This makes me wonder what meds were used during anesthesia...

"Impairment of the HPA axis — There are circumstances in which cortisol availability can not be increased sufficiently to meet demand. As an example, drugs like ketoconazole, phenytoin, and etomidate may impair cortisol synthesis [11,19,20]. An observational study of 62 patients found that the use of etomidate for intubation was associated with increased likelihood of having a poor response (≤9 mcg/dL) to ACTH stimulation 24 hours later (odds ratio 12, 95% CI 3-50) [21]." (Source: Up-to-Date.)

Is this what I'm dealing with? Functional Adrenal Insufficiency? Relative Adrenal Insufficiency? Isn't that like adrenal fatigue, which no doctor believes in?

"Subnormal corticosteroid production during critical illness in the absence of structural defects in the hypothalamic-pituitary-adrenal axis has been termed "functional adrenal insufficiency" or "relative adrenal insufficiency." There is currently no consensus on the diagnostic criteria for this entity" (Source: Up-to-Date.)

WTF is Partial Secondary Adrenal Insufficiency? Sounds like an apt description.

"However, occasional patients with partial secondary adrenal insufficiency, based on metyrapone or insulin tests, but with normal basal cortisol values, have had an inadequate clinical response to the stress of surgery or sepsis [20]. The overall clinical importance of these observations is not clear, because the prevalence of the scenario is not known." (Source: Up-to-Date.)

This one is a good tidbit on how there is no way to predict HPA suppression. Everyone thinks there is, but it's not so cut and dry.

Iatrogenic AI is caused by suppression of the HPA axis due to glucocorticoid therapy in pharmacological doses.22 Traditionally, it was believed that the degree of HPA suppression and adrenal atrophy in patients receiving exogenous glucocorticoids was related to the duration and dose of therapy.22,23 In patients taking any steroid dose for less than 3 weeks, suppression of the HPA axis is rarely clinically significant.23 Conversely, any patient who has received the equivalent of 15 mg/day of prednisolone for more than 3 weeks should be suspected of having HPA suppression.23 However, recent studies have found poor correlation between HPA axis function and the cumulative dose, the highest dose or the duration of therapy.24,25 Because of the considerable inter-individual variability in the degree and duration of adrenal suppression, it is difficult to accurately predict which patients will develop AI when glucocorticoid treatment is discontinued. (Source)

Some info that reiterates it’s hard to predict when suppression will occur and a yes on stress dosing for surgery. (Am I the only who laughed out loud at the sentence in italics? I think it should read understated. I'll believe it's overstated when physicians are anxiously lining up to check my cortisol levels as opposed to telling me no.)

“Some authors feel that glucocorticoid courses of less than 3 weeks
duration will not lead to HPA axis suppression, no matter what the steroid
dose, and therefore patients can be discontinued from steroid therapy
immediately and safely up to that point [18]. Others believe that at relatively
high doses, significant HPA suppression can occur after as little as 5 days,
but that at physiologic doses, suppression is unlikely to occur in less than
1 month [48].

Despite efforts to understand the effects of long-term and high-dose
steroid treatment on the HPA axis, clinicians remain unable to predict
exactly which patients will have HPA suppression [49]. The actual risk of
clinically significant adrenal insufficiency in patients who have been on long term
glucocorticoid therapy, however, may be somewhat overstated.

A double-blind study of patients on long-term supraphysiologic glucocorticoid
therapy with secondary adrenal suppression who underwent moderate to
major surgical procedures found that those patients who underwent surgery
on their usual dose of corticosteroids had no more complications than those
given the traditional stress-dose steroids during the perioperative period
[50].
Conversely, there certainly have been patients whose inability to mount
an appropriate stress response after long-term glucocorticoid therapy had
tragic results. Therefore caution on the side of short-term stress-dose
therapy still seems prudent.” (Excerpted from: Endocrinol Metab Clin N Am 34 (2005) 371–384. Exogenous Cushing’s Syndrome and Glucocorticoid Withdrawal.)

Addendums

2011-11-08T04:57:00.000-08:00

1.Got the ER records in case they showed anything useful. They don't. Not even a cortisol test (which I kind of applaud the ER doc on that one. Random middle-of-the-night cortisol levels don't mean much).

There were some things you would see with dehydration, but nothing indicative of anything. Nothing I can point to and go 'here is where I had an adrenal crisis.'

However, OMG, my blood pressure was higher than I've ever seen it. It didn't start going down to 'doctor office high' until after the steroids,which is when most of the burning in my back and stomach resolved.

I do check my blood pressure. Not as much as when it was flipping out like a ping-pong ball high on meth and a case of Red Bull, but every so often I verify that yup, still fine. And it has been fine ever since I've been off steroids.

So it was crazy to see such high numbers.

Now that I'm on steroids? It's ping-ponging again. Up up up up and down down down.

Whackadoo. Like a game of pass out chicken.

I have a hypothesis that is poorly researched and barely understood because I'm too effing tired to think, but I soldier on anyway. My theory is I get an adrenaline surge when my body needs cortisol and can't find it. This jacks up the blood pressure and then it tanks when I start to run low on adrenaline.

There is some talk of how adrenal patients run on adrenaline during stress, but there's no universal experience of high bp...so maybe a crap theory. Although I know some patients with documented Addison's who've had some bp weirdness due to other medical issues causing problems.

2.I felt such shame disclosing the struggles I'm having as a recovering PK because seriously, how wimpy is that? However, I am not alone. There are studies and papers and a 12 step program. Somewhere out there is a respite resort even.

And my feelings about it all are all part of the PK experience. Also, I possibly may be ramping up for a rip roaring mid life crisis. Which, I hope not, but there's clearly a deep emotional transition/transformation going on.

I just want to cram it all back into the box, but it keeps leaking out. Not the best timing over here. Kinda busy on the too much/too little can't-live-with-it-or-without-it steroid front.

3.Stomach polyps are rare. Another 1% (or 7% or 12%, medicine can't make up its mind) outlier occurrence to be added to the list. I think my body is going for the complete set.

4. No one else has started puking and we all ate from the same sandwich for dinner. So it's not looking like I had a bug of any kind.

5.Still woozy and weak. This is a bad place to be.

Status Check

2011-11-07T04:17:00.000-08:00

Steroid withdrawal has diminished a bit. I could sleep last night and didn't have to fight spasms in my diaphragm to breathe.

The asthma is still pretty active. I still need the rescue inhaler at night and have been taking Pulmicort twice a day to try to beat it back into submission. Crossing fingers...I think I'm winning. (Update: Last night...first night without needing albuterol. Yes!)

I am eating! And yes! I'm excited about it! Not a lot, but at regular intervals. I have lost weight though and hit a number on the scale I haven't seen in a year (finally, a diet that works!).

My adrenal glands aren't burning anymore. So they've either given up and died or are feeling better.

Still weak. Weaker and fuzzier than I should be. I am trying to get by on the smallest possible dose, so perhaps am not taking enough.

Dosing is tough.

Endo told me to do 40mg and reduce by 5 every 2-3 days. They also told me I didn't need steroids and that this would not suppress the HPA axis (I am doubtful since my HPA axis is the gold medalist valedictorian champion etc... of suppression).

So the mixed messages from the endo and my fear of suppression mean I've been doing strange things with the dose. I feel guilty for taking them since I supposedly don't need them, so I try to minimize the dose.

Actually, I've been so loopy, I couldn't tell you how much I've taken at any one time other than to say, it was never 40mg and I only split dose a few times. Because splitting makes suppression easier.

Over the weekend I took 15mg of hydrocortisone, but I don't know where I came from. Maybe down from 30mg? Obviously, if I can't even keep track of my dose, I must be doing it wrong.

Today I will boost the dose back up to 30 and see what happens. If it helps, I am thinking of doing an alternate day high-low dose. Because I don't want to suppress.

Hedging my adrenal bets.

Life Goes On

2011-11-06T05:29:00.000-08:00

I was finally able to eat two meals in a row. Oh wow, food makes a difference. Wish my appetite would stop flaking.

I have steroid withdrawal symptoms except I'm taking steroids so what is that about? The solumedrol dose leaving my system? Was up most the night Friday with muscle cramps and asthma. And my neck is burning like a supernova right now, so I probably should stay off the 'puter until my muscles stop freaking out.

So while I've been falling apart, book related things set in motion weeks ago have been coming to fruition. It was such a bright spot, albeit kind of surreal, to find another 5 star reader review on my book, get notice of another positive review from a book blogger and see an interview I was inordinately excited about go live the day I got out of the ER.

Then...then I got a panel request form from a conference. This is small potatoes to the world at large, but huge on a personal level. I am really excited as this is something I have always wanted to do. I got to pitch panels and maybe I'll be on a few, telling people what I've learned.

No worries about me getting a big head. I had one reviewer email to tell me they hated my book--did I mention that? Thankfully, by then I'd already had multiple good reviews and some 5 star reader reviews. Not every book is for every person. I intensely disliked Breakfast with Buddha, for example, but a million other people made it a bestseller.

Plus I'm still not selling a ton of books, but it is selling. There are some doing worse and some doing better than me and my little novella, I'm kind of in the middle of the pack. Now I just need the energy to finish and publish the two projects I have pending.

Trying to Eat

2011-11-05T04:35:00.000-07:00

Still limping along. Steroids are making all the difference, but my appetite is missing yet. Which means low blood sugar. Which just makes things worse. I need to eat.

So once I finally took enough steroids to function (I keep trying to get by with a small dose, it's so not flying), I took my wheezing toddler into the kitchen for some experimental blender food. Trying to make something I would be willing to eat.

We came up with pumpkin smoothies. Low carb, but with some carbs from yogurt to boost my blood sugar.

It was really good. Even the toddler liked it and she is impossible to please. The recipe is here and even though I'm low carb, the smoothie is very adaptable to whatever constitutes healthy food in your book.

Comedic Relief

2011-11-04T06:49:00.000-07:00

1. The toddler snuck the scrub pants I wore home from the endoscopy into her bed. Ewwww! They are now in the garbage.

2. She appropriated the (unused) barf bag from the ER, filled it with water and ran around the house muttering about how it was perfect for her 'museum collection'.

3.We all wanted to go to bed, but couldn't because the toddler was still up. Instead of staying in bed, she sat in a laundry basket giggling maniacally. She's been sick too and needed the albuterol which always winds her up.

4.I am pretty sure, with all the broken capillaries and bruising, that I am the poster girl for what zombies consider ugly. Just in time for our 16th wedding anniversary.

I took more steroids and feel much better. Well enough to eat. You would think 125 mg of solumedrol would last longer, but no, not so much. I thought I would be peppier than this, instead I drifted through life like Lurch until I got a clue and took some 'roids. Up until that point? I wasn't sure I would make it.

Also? The asthma laughs and spits in the face of solumedrol. It's getting lost in the adrenal drama, but the asthma is mad as hell. This seems to be a reaction to anesthesia. I wheezed enough to get a chest x-ray at the ER, but no neb treatments. I almost asked, but figured I was breathing pretty well and pulse ox was good, even if the lungs sounded like fizzy pop. Besides, I have a neb at home. No need to pay a grand for what I can do for myself.

The endo thinks I'm nuts, but also atypical yet denies everything while also giving me steroids. (I think the technical term for that is mind f*ck.) I think I'm pretty typical especially when I talk to other patients. Know what is really typical? The gap between endos' care and their patient's experiences.

The high bp continues to be a confounding factor. My perception, as the hostage of this body, is the bp spikes trying to cope with the stress. My body is fighting. If it hadn't fought that night or had lost, I would've passed out. Alone.

Next time I'll bring the bp unit so they can see the lows. I've decided this adrenal shiznit is much more nuanced than anyone realizes.

Maybe an Adrenal Crisis

2011-11-03T09:34:00.000-07:00

I'm tired and I have a headache with the shakes so this may not be the most coherent post ever written.

I went to the ER. Primarily because the vomiting precluded oral steroids and I needed help working around that. And there was the possibility of an endoscopy complication. Also, I was shaking until my teeth chattered, short of breath and my stomach was burning hot.

The doctor was great, really great. I would have liked to have had the IV steroids a little faster as studies show delaying the dose is what leads to death in an acute adrenal crisis. But the ER was, overall, great.

It helped that I looked like sh*t. The endoscopy anesthesia had beaten me up pretty good to begin with so I had the fat lip and some broken capillaries already. The vomiting then made my face bleed under the skin on a large scale. Natural zombie make-up. Today I have black eyes.

I went from Triage, barely able to keep my eyes open to winking at the triage nurse on my way out saying "Steroids" in response to her "You look so much better."

It's hard to say what happened. The thinking is it was an adrenal crisis or an almost crisis, but I was not text book. For one, my bp shot up way high. It had been too low all day and I drank pickle juice as I wasn't feeling great (but not so bad I thought I would end up in the ER! In fact, I felt optimistic about the next day being even better.).

I had no idea I was going to throw up. Did not feel sick at all. There was no warning. I went from 'tomorrow is going to be great, I'm on the road to recovery' to puking in the tub from my position on the toilet. It was very fast. Very sudden.

I was terrified I would pass out and was desperate to reach the hubby. He didn't check his phone, the stinker. Neither did his friends or the skating rink he was at. My neighbors were all asleep already. So I packed a bag and tried to wait for the hubby figuring 911 was always an option.

They started me with fluids, which helped give me control over whether my eyes stayed open or not, but didn't touch the abdominal pain and then I started wilting again. The steroids are what finally eliminated the pain and 'woke' me up--that is, I think, probably the most credible evidence that it was adrenal.

My lab work was also normal, but I gather this is not unheard of from other adrenal patients.

And that's it. I'm going back to bed. I probably forgot to include something important.

Complications

2011-11-02T18:42:00.000-07:00

Umm...so I started puking???? In the tub because I needed to be on the toilet.

And I can't get a hold of my husband.

So I'm home alone with a toddler who I think is sleeping.

I have no idea what is going on but I'm in trouble and I don't know what to do.

They Know Jack About Adrenals

2011-11-02T05:43:00.000-07:00

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.

My Very Own Scrubs

2011-11-01T13:22:00.000-07:00

Round two of endoscopy vs. PoP was today. Recovery from the drugs seems easier, maybe because I didn't get a bunch of extra doses?

However, I have a fat lip leading the hubby to call me Angelina Jolie and I peed my pants because they let me wear them. So I had to go commando in ill-fitting scrubs to get home. Hubby wants to know what kind of doctor I'm seeing that sends me home without underwear.

The pain from the air that was pumped was beyond excruciating for some reason. It hurt so bad I couldn't take deep breaths and was crying on the way home. Thankfully, the air is dissipating.

There is nothing in the ducts and the pancreas looks good. So scope is negative, OB has been checked on the off chance it's an ovary gone bad, and there's really nothing else to check. My body just hurts for no good reason. At least now when it feels like a rupturing appendix, I know there's no pathology and I can safely watch 2am infomercials until it subsides.

I did have a polyp which as been removed. My body grows things like a frustrated gardener; skin tags, moles, cafe au lait marks, small tumors in each lung, thyroid nodules and now polyps.

They said I may need a lower GI scope and more scopes in general, which is horrifying to consider. I plan to avoid them as much as possible.

The Wand Worked

2011-10-30T10:27:00.001-07:00

Those fairies making wands in China are totally badass. Voila! I am better. From feeling like my head was going to detonate and shoot my teeth out like shrapnel to perfect health. Just in time for other sh*t to hit the fan, but this blog is not about that sh*t.

We've been taking the toddler to church because she is curious about Jesus. I have PTSD from being a preacher's kid, as evidenced by the sorry fact I cry every time we go to church, but we go anyway. I have learned to bring Kleenex. (No, not kidding. Yes, totally lame, I'm working on it.)

This week, they dressed up in their costumes and collected change for UNICEF from the adult Sunday School classes. Isn't she adorable?

When I was a pre-teen, the family business took me to weaving conventions on a regular basis. It was as hippie dippie as it sounds. My mom bought me the kimono the toddler has on* and I dug it out of the closet when I saw how cheap and crappy the store costumes were. Sorry, not paying $30 for fall apart crap made with industrial carcinogens--those fairies in China are slacking on the Halloween costume front.

(*I did actually wear it. Worse, I liked it. Which may explain why I was such a loner during my adolescence. Kimonos were not and are still not 'in.' )

Of course, only after I got the toddler all excited about the costume did I find out the kimono has some value. It's about 60 years old and people collect them. I had no idea! Now I'm just holding my breath that this is not its last year on this earth.

But she's happy. I'm happy she's happy given that she had a 5 hour fit over costumes a couple weeks ago. And it's kind of a family tradition as I was a Geisha girl for Halloween back in the day.

Snot vs. Anesthesia

2011-10-28T07:16:00.000-07:00

I am trying to fly without steroids today. Of course, today is also much worse on the boogie front. Possibly looking at a sinus infection, although it's too soon to say for sure.

So...what level of sick is too sick for anesthesia?

I know I need to call and ask, but I'm hoping if I wave my daughter's little made-in-China fairy wand around and consult the magic 8 ball (aka the internet) that things will magically work out.

Fast 10

2011-10-25T08:49:00.000-07:00

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.

Last Laugh

2011-10-17T11:58:00.000-07:00

Hahaha. Well played, Murphy's Law. Well played.

I have food poisoning (the windshield).

It's not terrible, but just enough to completely derail me (the bug).

And, lucky me, we have a Halloween party.

Which the toddler has been throwing a 16-year-old tantrum over costumes. Hours and hours of emo drama. Oh. My. God.

We tried 4 costumes. I even pulled out an 80-year-old vintage kimono and did a Geisha costume for her. She looked darling. Which means, of course, she hated it and her shrieks spiraled into new octaves.

I'm about ready to yank her clothes altogether and call her Lady Godiva, except I hear CPS frowns on that.

My student canceled tonight, which is good since I feel pretty yuck-o. Of course, yet another Monday with no billable income. I'm, like, totally talented at making no money.

The other federal school program is still waiting on funding.

Further, the endoscopy with anesthesia to combat my Twilight Kung-Fu now conflicts with that job. They haven't fired me because they have no idea as to start date and think they can get a sub so it may work out. But I would not be surprised if this one fell through too.

Okay, time for the Halloween party. Let's all hope I don't puke!

Coma of Procrastination

2011-10-16T13:39:00.000-07:00

I have work to do, but I don't wanna do it. So, hi. Let's kill some time.

Last year, if you recall, I 'fired' birthday parties. Without fail I would be sick or the toddler would be sick or guests would have H1N1. Every year I cooked a full meal for 30+ people and cleaned my house and dealt with the sick. After the third year in a row, I quit.

Of course, no one was sick for the toddler's birthday this year, which did not surprise me. Murphy's Law likes to make an example of me.

(Don't tell Murphy, but I planned it this way. He thinks he's such a maverick...)

The downside? Three separate birthday parties. Which means an exponential increase in cake consumption.

Ergo, I am so high on sugar right now, I suspect I'm having an out-of-body experience.

And nope, still not gaining or losing weight. It really doesn't matter what I eat or don't eat--within reason, a gallon of ice cream three times a day probably would not end well. I'm just stuck and mostly accepting that I have to be patient and wait my body out.

It doesn't help that I cut back on exercise. Something had to give. My energy is much more balanced now that I'm not trying to work out daily on top of everything else. It frustrates me, but I'm also glad to see an improvement. I just need to keep up with some form of strength training as the push-ups help my neck and the squats keep me from sciatica type pain due to de-conditioning. Plus stabilize the knee that wants to die.

Yes, I'm falling apart. Try not to stare. I'm sure part of it is related to the effects of steroids on my muscles.

The other change, I can get up in the morning now. There's no longer the feeling of wanting to sleep forever. I wake up and I'm ready to go, even if I'm a bit short on sleep. It used to be the toddler would snuggle with me and watch PBS while I snoozed as long as she would let me. Sometimes I would negotiate with her for more sleep. Now I don't need the extra sleep.

That's pretty significant progress actually. I can't remember the last time I was able to just get up and go. Probably sometime before March 2010.

Yes there were some moments where I did pretty well, but the default setting has been being too tired to get up, hitting 'snooze' for 30 to 180 minutes. The metric was, it was a bad day if I couldn't get up until noon, anything earlier was a pass. Now I can bounce out of bed. Now I leave the toddler behind because she wants to finish a cartoon and I'm done laying around. That is a super new normal.

Saturday night, however, the hubby and I went dancing. I couldn't do much more than 2 hours (1.5 of it dancing) before pooping out. Today has been a low energy day for me as a result--just dragging. So I still need to be careful and plan to pay the piper on those occasions that I know will exceed my limits.

I really need to remember that just because the HPA Axis is fine on paper, does not mean I can go 1000mph. I've done this before. The recovery is always a slow progression. This has been the most gentle one yet. In past HPAA suppressions, I was cut loose on double digit doses of prednisone and the steroid withdrawal was crippling for up to a year after.

I mean, I can exercise! That in of itself is pretty amazing, even if I have to scale back. Prior episodes, I would try to go for a walk and end up sitting on the sidewalk, weeping in frustration as I waited or the hubby to go get the car to pick me up.

You don't come out of suppression one day and go back to full capacity the next. That's like taking off a leg cast and immediately trying to run a marathon. Why do I always forget this?

Give it time. Give it time. Give it time. My new mantra.

Get Better or Face Evisceration

2011-10-13T17:29:00.000-07:00

I finally had a day where I felt like I hit my stride with this crazy schedule I have going. My energy is okay and things are in a upswing.

Thank goodness for the improvement, otherwise I would be fodder for the new fad of targeting and eviscerating patient bloggers who aren't sick in just the right way. Because that's what puts the care in medicine, amiright?

Like I need help finding that kind of abuse. I mean flame war. No, that's not right, umm, trolling? No wait, I mean coping with the stress of a really hard job, you guys, so all you complainers who don't like what's being said? Shut-up.

Or you're next.

Med Bloggers:Where patients are punch lines and on a really bad day? Punching bags with no privacy or dignity or compassion.

It's okay if patients get reamed by name so long as the med blogger is anonymous--right?

Once again, the patients don't make the rules. Or hold any power.

Why am I not surprised?

Internet imitates life.

Quick List

2011-10-12T10:47:00.000-07:00

1. The toddler may graduate from PT soon-ish. Squeeeee!

This does not mean that the falls have stopped. I don't think they will, not any time soon. But we have seen progress in physical ability and control. Big picture? I can take her to a park and she actually plays. Before? She just stood there unless you took her by the hand because she didn't trust her body to be there for her.

We're going to take a break over Christmas and see if she regresses. OT will continue as she just started in July and has a ways to go still.

2. By the way? She'll be 4 tomorrow. *bawl* I don't know where the time goes.

3.I lined up 4 jobs to try and keep my schedule open for various therapy appointments for the toddler as well as to maintain flexibility for if I get sick (I'm still a little skittish.). What are the odds that all 4 would be a bust? For me, apparently 100%. Very frustrating. It breaks down like so:

1.Writing. Guess what? Great reviews from big review sites don't do sh*t for sales. However, I am building a 'brand' whatever the hell that is. Based on reviews of my work so far, an author is featuring my book in their newsletter for their fan base. There's all sorts of positive energy, but no actual cash. Screw the energy, I need the cash.

2.Tutoring. Students continue to not show up which means I don't get paid. The whole program is a waste of federal tax dollars. 1 student in 3 years actually finished the program. ONE. The rest drop out because their home environment and mental health are so unstable that reading and math are the least of their concerns.

3.School program coordinatorwhatsit. Another federal program, this time one with a great reputation. Funding is still pending (it will come, but who knows when) so start date has been pushed back three times.

4.Contract tech work. Ill-suited to my talents, which combined with sh*tty training? Disaster. I'm giving it a month and then I'm going to quit and possibly file some kind of complaint somewhere official. It's not a scam, but it's shady.

My preference would be full-time something, but I held off due to the toddler, my own wobbly recovery, and the fact we may be relocating for the hubby's job. Hopefully, we will hear more on that soon because the waiting is getting old.

EMIGRATION by Tony Hoagland

2011-10-11T06:04:00.000-07:00

I first found this poem when dealing with infertility and ran across it again in my files the other day. What a great depiction of chronic illness.

Try being sick for a year,
then having that year turn into two,
until the memory of your health is like an island
going out of sight behind you

and you sail on in twilight,
with the sound of waves.
It's not a dream. You pass
through waiting rooms and clinics

until the very sky seems pharmaceutical,
and the faces of the doctors are your stars
whose smile or frown
means to hurry and get well

or die.
And because illness feels like punishment,
an enormous effort to be good
comes out of you--
like the good behavior of a child

desperate to appease
the invisible parents of this world,
And when that fails,
there is an orb of anger

rising like the sun above
the mind afraid of death,
and then a lake of grief, staining everything below,
and then a holding action of neurotic vigilance

and then a recitation of the history
of second chances
And the illusions keep on coming
and fading out, and coming on again

while your skin turns yellow from the medicine,
your ankles swell like dough above your shoes,
and you stop wanting to make love
because there is no love in you,

only a desire to be done.
But you're not done.
Your bags are packed
and you are travelling.

The Up Chuck Wagon

2011-10-09T05:47:00.000-07:00

We managed the pumpkin patch. I hated every second of it.

I spent the hour long ride there battling the asthma and being so tired and weak, I actually searched my purse looking for steroids. Yes, I actually felt bad enough to justify steroids. However, I didn't have any, which was fortuitous as I did perk up by some miracle. For a while there, I thought I'd have to sit in the car the whole time.

But then the hay ride? Jostled my twitchy gut to the point of pain. I thought I was going to end up hurling over the side of the wagon. So feeling good didn't last too long.

The patch itself was hot, overcrowded and understaffed. Parents were ill-tempered and children ran wild. One mom kicked her son in anger. Yes kicked. Those of us who saw it, couldn't believe it. "Did she just kick her kid?" Yes, yes she did.

I saw the back side, the hubby saw the kid's face crumple and it was all very sad. I wish they had been close enough for me to say something. Because I would have. I am not the momma you abuse your kid in front of.

(And I wish I had gone after her, but she was a ways away and we were just stunned. By the time we all processed what we saw, she was gone.)

Then there was the 7/8ish-year-old girl so selfish she had to take toys from my 3-year-old. WTF? I explained to the girl how the toys worked in case she was confused--it was kind of a game and there were enough toys for everyone. When she snatched all the toys away from my toddler yet again, I told her she should've asked first.

She just looked at me like she was hearing that concept for the first time in her life, and then kept grabbing. So, of course, my kid is in tears. The other girl's mom was right there the whole time, but acted like she was blind, deaf, and dumb. I was starting to turn into Hulk the Momma Bear, which is not my best look.

So I pulled the toddler away and just told her that the girl was not nice and she shouldn't play with her. My 3 year old has better manners and I told her as much. She never once grabbed toys and she tried to share.

I hate those situations. Basically, it tells me I'm raising a kid who will always get screwed because she's doing the right thing. Based on the kids yesterday (and there were hundreds) it's Lord of the Flies anymore. From what I saw, manners just mean you get nothing but hurt.

Sigh.

Anyway, today, I feel better. Not as sick but I know if I exercise, I'll destroy what energy I do have and backslide. What does that mean? That I should take some steroids? Do I need a boost? Or should I stop exercising?

I'm confused. Things are not sustainable and haven't been for a few weeks now, but I don't know what to do about it. I don't think anyone else does either. Adrenal crap is the Mojave of medicine.

Maybe it's another adjustment period. I've gone from doing two things; parenting and exercising to adding a more than full workload. I am so busy, I often can't get to everything that needs to be done. I send frantic last minute emails dumping the responsibility for dinner on the hubby because I've run out of time. I'm sure I need a hell of a lot more cortisol than usual for that kind of schedule. Perhaps the HPAA system is lagging a bit?

Or it could be that the gut is a drain on the system. The pain is progressing in intensity. I had the anesthesia consult and need to call to set up the next round of endoscopy with ultrasound.

The thing I really hate is I trusted my body enough to make formal work commitments, but with the way it's been behaving lately, I am concerned that I'm going to end up letting a lot of people down. And losing income. Again.