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.