Lowering Expectations

Just when you think you know a pattern...

I've had significant GI weirdness now for three days. Surely one round of bad dairy would be done with me now?

The edema has gone from pretty much resolved to completely resolved and back again. At least my shoes fit though, which is the important thing.

The sore throat stuck around and is trying to be an actual illness. Even riling the asthma up a bit.

While I am very tired with some weakness, I feel no pressing need to take steroids.

Huh.

Speed Blogging

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

Bad News: Preschool teacher was out with the pukes.

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

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

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

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

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

So I took 5mg and it is helping.

The end.

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.

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!

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.

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.

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.

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.

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.