Saturday, November 12, 2011

This Post Makes No Sense, Read at Your Own Risk

I am off steroids as of today. The today and tomorrow in the previous post are a day off. I try to keep the time line straight as I write so things don't get confused but sometimes I mess it up. Sorry. (Although I hope your life is not hinging on my ability to keep the day things happen vs. the day things post straight.)'s the usual woozy and about two blinks from falling asleep where I sit. We will see how I do without steroids. I think I actually weaned a few days early. Unfortunately, my sense of time has been weird since the ER. Half the time I'm lost in a fog.

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

If I need to updose, I will.

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

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

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

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

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

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

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

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

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

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

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

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

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

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


  1. Totally hear ya on the anti-hunger. Though, I'm at the higher cortisol munchie phase these days. Seems with all of the swings the weight gain damage from the highs is never quite balanced with losses during the lows. Another perk of steroids.

  2. I know exactly what you are talking about with "anti-hunger". I find that when my blood sugar has gotten low, this is an issue. When I find myself staring into the fridge for over a minute and judging everything as "no, not that..." I need to just force myself to pick and eat something. It's times like this that I am grateful for peanut butter cookies.

  3. Funny you should mention cookies...made some lovely low carb crackle top molasses cookies yesterday and couldn't eat them.

    Couldn't eat them today even. I did manage a good sized smoothie that I pumped up with cream and flax seed to help keep my blood sugar stable.



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