Stopping Steroids and Staying Fat Against My Will

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

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

So far today, feeling blech.

Headache. Cranky. Tired.

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

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

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

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

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

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

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

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

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

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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.

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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.

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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.

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Question of the Day

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

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

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

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

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

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

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Shock & Awe

So the toddler's PT and I are pretty chatty. Actually, I wouldn't mind staying in touch with them beyond therapy, but we'll see.

Anyway their kid was in the ER for a decently serious allergic reaction to an OTC that no one is ever supposed to be allergic to. So they ended up on steroids, a five day burst.

The ER doc took the time to explain how the steroids would impact the kid's appetite and weight.

At that point, my jaw hit the floor and I lost consciousness from the shock.

Wow.

Basically I'm pre-diabetic, overweight and having all sorts of medical fun because not one physician ever attempted to educate me on the impact of steroids.

I was never even given the chance to take personal responsibility for my health because medicine didn't do their part. Over and over and over again.

Of course, I did get shaming lectures on my weight from the ped who was prescribing the bulk of the steroids between the ages of 15-18. Medicine totally wins at hating fat people.

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HPA Axis Suppression By The Numbers

-15 months on steroids

-3 endocrinologists

-1 endocrinologist who would actually deign to run the blood work

-1 botched ACTH challenge (none of the draws were on time and they missed one entirely)

-5 different ways to interpret those ACTH challenge results (endo says fiiiiiine, I'm a bit more skeptical)

-1 pulmonologist who maintains it's "not adrenal"

-6 the am cortisol level in December

-<5 the ACTH level in December

-1 doctor who tried to tell me I didn't have asthma

-0 doctors who managed to come up with HPA axis suppression as a diagnosis (officially I believe it's still characterized as 'weird steroid withdrawal')

-1 previously well documented incidence of HPA axis suppression with an am cortisol of 1, the records of which were available to all treating physicians (So WTF?)

-1 toddler who did not have the momma she needed...for 15 months

The root cause of all this?

1 (ONE!!!!!!!) measly asthma attack.

Sheesh.

Now the wait begins. Can I stay off steroids?

I don't know.

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