The Adventure Begins

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

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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

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

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

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!

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

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

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

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)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!