Thursday, June 30, 2011

HIDA Scan That Would Not End

Thank goodness I have someone visiting who can just up and toddler sit for 5 hours because the two hour HIDA scan? Went on and on and on.

My gallbladder wouldn't dump the radioactive dye. They had me walk. And walk. Jump up and down. Go to the cafeteria and sniff food in the hopes of prompting the gallbladder to empty. I got in a full 30 minute workout trying to get that stuff to move.

Two hours later, it finally started to empty. Emphasis on started. They went back and forth trying to decide if the dye had really moved into my small intestine or not. The doctor said no. So I had to walk some more. Then three nuclear techs hemmed and hawed over the films (video?) and, finally, everyone agreed it had moved.

So they did the CCK thing so they could measure the gallbladder ejection fraction. For something that was previously so sluggish, it did manage to contract and move stuff along with the CCK.

I was released four hours later only to return because I bled through the band aid and all over my shirt. Of course I wore a nice shirt. Which is now ruined.

While it is not normal for the dye to take 2 hours to clear the gallbladder, that doesn't mean the HIDA scan is abnormal.

Place your bets. Will the HIDA scan show the gallbladder has to go? Or is it just a GERD gut motility thing?

I bet the HIDA scan will be normal. I think it's probably a gut motility issue.

On the upside, the test reproduced the appendicitis symptoms so now I know I feel that way when the gallbladder isn't emptying like it should.

Wednesday, June 29, 2011

Make Up Your Own Title As I'm Stumped Pickle Time

Edited at the bottom of post.

Okay, this is just wrong. My body keeps trying to fall asleep on me. I don't feel particularly bad or anything, but my body wants to make like Rip Van Winkle.

I skipped one day of exercise. Probably will miss today too as the house needs to be cleaned and I will be too tired after that to do much.

There is the occasional flank pain/twinge, which let's hope it's just that those nerves have learned to fire that pattern and are doing it just for fun.

Maybe I should eat? I'm not hungry right now though BUT sometimes those sugar lows kill my appetite. Although I just had breakfast an hour ago.

I don't know. Feeling not too bad but not too good.

There was finally some weight loss after 6+ months of nothing. Just in time for me to eat birthday cake and mess it all up. Sigh.

The HIDA scan is tomorrow. I am crossing everything it helps find a solution. A few days ago, the gut kept me up and googling, until 2 am, trying to discern whether I needed immediate medical care or not. I voted for not and the gut calmed down eventually, but it's still there, ready to pounce at the slightest provocation.

Edited: I ate, it didn't help. My BP is low, not completely tanking but 100/60 ish which is low for me. I am also symptomatic of low BP and feel like I'm being sucker punched (aka adrenals are pissed). So drank 3/4 cup pickle juice followed by a square of toffee (12g carb). Let's hope that turns it around because I need to clean the house.

Just to make it more fun, the toddler is bleeding to death. She fell. (Of course!) She's phobic about band-aids. I finally got one on her after an hour of trying to soothe the hysterics (unsuccessful). She has now bled through the band-aid. (Of course!) Up next is the big sterile gauze pad which I'm pretty sure will cause her to hyperventilate and scar her for life.

Wish me luck.

Monday, June 27, 2011

Mini Tank

After four days of exercise and yesterday's a-g0-go-go, I am tanked. Just a wee bit.

We were up a 8am, I exercised, we drove to visit relatives, 2 hours of mall walking, home and then a movie, bed at 1am. Looong day, but my energy was good throughout. I felt really normal and the contrast of then vs. now was quite the revelation.

Today, however, it's the usual couldn't get up. It's taking me a long time to feel awake. Some heaviness in my limbs, but not as much as I've seen before. There's also some wheezing and loss of voice, which came out of left field.

So we're taking it easy for today. Running to the DMV for my sticker since my birthday is coming up and then taking the toddler to the pool.

Baby steps.

Saturday, June 25, 2011

Picture This

Once again, I should be cleaning the house since guests are about to arrive, but here I am procrastinating. Lucky you.

As part of my effort to exercise myself into the SAI hole again, I went for a walk today. (I have exercised and promptly taken a nap for the last three days straight, go me!) Brought the fam with me for a bit. The toddler was not happy about it, but then we saw some deer and her sense of adventure took over.

I did not get great pics of the deer. (It figures, when I don't have a camera, they are up close and personal, when I do, nada.) Last week they were maybe 15 feet away, this week, they were quite skittish. I did see the babies again though. They are getting big!

I keep hoping I'll spot a fox again after having a very close, sustained encounter with one. Although they are nocturnal and not usually up during the day unless food is scarce.

Oh, almost forgot to tell you about the biggest discovery. I call it the Fairy Queen's throne! The toddler had to go to swim class (aka Attempted Drowning 101 as she spends most of it underwater forgetting to breathe) so she didn't see it. I hope to take her though and we'll pick some wildflowers to leave on the throne.

Doesn't the picture just spark your imagination? Or was all that fresh air going to my head?

And then I took pictures of a busy bumble bee and some flowers.
.
I caught the bee in mid-flight, click to enlarge so you can see.
.
.
.
.

.

Not sure what the bugs are in the daisies. Midges? Mosquitos? Gnats?

Friday, June 24, 2011

Latest Am Cortisol Results & Other Things

Am cortisol drawn earlier this week was 11. I was told anything over 10 is considered normal. However, there are, as usual, 50 different ways to interpret the results.

Here.

Here.

Here.

Just to name a few. There are many, many more. Both for and against.

My take? Remains the same. I am okay to be off steroids, but not quite up to full production capacity and the HPA axis is still somewhat unresponsive to demand. The endo obliquely alluded to that in our short phone conversation.

I am realizing though, if my take is accurate, this may be SAI or a recovery. It could go either way. I hadn't thought of it that way before. I just assumed the HPAA would ramp up, but I guess it may not.

I am also underwhelmed that the am cortisol level isn't higher than it was in December when we did the first ACTH test. It's actually a bit lower, although probably still within the realm of normal fluctuation. I was hoping for a 15 (I've heard of endos that say you'll feel like crap at anything below 15 and I believe it!).

Nothing changes. I push myself to live as fully as I can so that, if I tank, it will show up on the ACTH test. The endo says from here it depends on how I feel. I didn't pursue that statement, but I infer that it means I could take steroids if I needed them? Or maybe if I still feel slow and sluggish they would do more testing? Wish I had thought to ask for an elaboration.

As for the gut, it has finally calmed down. My gallbladder ( I assume) is still bouncing around in there, causing a lot of sensation on the right upper and lower quadrants of my abdomen (it often mimics appendicitis and/or being skewered for shish kabob for some reason) but the heartburn seems to be under control. 40mg of Nexium seemed to do the trick. There's a lot less bloating and inflammation in the GI system than there was...so progress.

With regards to the writing, for those of you who asked to read...ummm. That's a hard one. It's kind of like asking to see me naked. Also it is very cheesy smut because that's what sells. Plus, it was what I had in my backlist to develop.

I am working on a project that will probably intersect with anything of mine that is published, so if you follow that when it's up, you'll likely encounter any books I have out.

Thursday, June 23, 2011

Endo Appt Minutes

I should be cleaning the house, which got pretty trashed during the two day edit-a-thon, but cleaning is no fun and blogging is a good way to procrastinate. The only complication, the toddler is having one of those 'mommy, hold me' days so we'll see how long I get to type.

1. I went in early and did the am cortisol draw. Although I think the standing order the endo put in was something more elaborate because I had the fancy test tube on ice blood draw for ACTH.

I will be shocked if it comes back low as I felt pretty awake compared to the previous two days though, I was comatose (just could not wake up and spent most of my time trying to finagle a way to lay down).

2. I was offered the option to go back on steroids after reporting that I exercised for two days in a row and then was laid low for two days as a result. (It's not just fatigue, it's heaviness in my limbs, like they are physically heavier than usual and I just don't have the muscle strength to move them.)

I said HELL NO. I did appreciate the offer and was really surprised at the idea that anyone gave two shakes about how I felt. But good Lord, to go backwards? No no no no no no nooooooooooo.

My take is that I must have some HPA axis functionality to even stop the steroids and it's do or die time. Either it works and I recover, or it tanks and the conversation changes, focusing on the lack of recovery. However, two days where just getting out of bed was an achievement is not tanking. It's not bad enough for me to go back on steroids.

(Okay, it may be that my sense of normal is messed up at this point, but I'm just not going to updose every time I feel tired.)

For all I know this is just part of the adjustment to the change in dose. It may pass, right?

3.We talked a bit about preventing suppression. A note was sent to pulmonology but I have no idea what it said. Probably something like 'this patient would not shut up until I sent a note, so act like I wrote something important when you see her.'

I told the endo my big fear is that I'm eventually going to end up intubated or in another situation where I can't speak for myself, it's just a matter of time. I don't want people thinking they can do whatever with steroids. They told me not to worry, I would be on steroids as long as I was intubated.

To which I replied, "Never underestimate the ability of someone to cut off steroids cold turkey."

One pulmo wanted to cut me off at 20mg last year. When I challenged that, I got 10mg, which was still too high. I have yet to meet a pulmo who seems to be cognizant of what a proper steroid taper should be. I have further refined my knowledge over the last year and now I know, but I am not always in a position to properly advocate for myself.

There needs to be a neon flashing sign in my electronic chart. "Patient has HPA axis of a gnat."

4. Another ACTH challenge is scheduled for July. Another shocker. I expected to be dismissed into the sunset, but instead I received thoughtful and conscientious medical care. I don't know what changed. Maybe I've proven I'm not a jerk or they've found this blog (in which case Hi!).

Between now and the test, my goal is to start exercising and pushing myself toward a normal schedule so that if I can't hack it, it will show up on the test. The only thing is, I'm still dragging a bit and would really rather sleep. Squats just don't hold any appeal right now for some reason.

One issue with the ACTH challenge, it is not diagnostic of Secondary Adrenal Insufficiency (SAI) from what I know. SAI can yield a normal ACTH challenge, yet the patient can still be insufficient. The ITT (Insulin Tolerance Test) is what diagnoses SAI so the testing may be of limited utility.

I highly doubt I'm dealing with Primary Adrenal Insufficiency. It would have to be SAI because I do have some functionality, just, possibly, not enough to allow me to do much.

My sincere hope is that I've achieved a baseline functionality that allows me to be off steroids, but that there's just a gap still between day-to-day production and ramping up to accommodate normal activities.

I don't think the endo sees it that way, which is fine, but I had hoped they would say 'Yes, that could be it exactly.' That didn't happen, but I'd like to hold on to my fantasy, okay? It has a happy ending and everything.

Wednesday, June 22, 2011

News,News, News

1. Completely unrelated to anything health related (unless you count a kinked up neck) but I sent a query to a publisher just because I felt like it. Not because I was serious or anything as I'm still pretty interested in self-publishing.

They said their response time was 4-6 weeks. It was actually 24 hours. I went from thinking 'oh good, I'll have a deadline and some time to tweak' to flat out editing for my life.

I think my fingers are frozen into claws. Here's a picture of the frenzy. All the paper is from line edits from a critique partner that I hauled ass to incorporate. It was more efficient to just toss each page to the floor once I was done with it. (Don't worry, the toddler has already scolded me for making a mess.)

I fully expect them to pass on the story, but it's exciting while it's lasts.

I'm not being unduly pessimistic, it's one thing to have the ability to write, another to write marketable fiction. I can write. Whether it's marketable is an entirely different skill set.

Best to keep expectations low.

2.Toddler's EI meeting was today and she got labeled.

Developmental delay.

I am so happy to see her getting some help so she can move forward, but wow, what a slap-in-the-face the DD label was.

3.Saw the endo, but will do a separate post on that appointment later. All I'll say is, I was surprised.

4. My temp went up to 98.7 and I felt pretty good today. I know the temperature doesn't really mean anything much, but I'm intrigued by the concept that molecules move faster with heat (think boiling water vs. room temperature water). When I think about it that way, it makes sense.

I Should Be Sucking Blood

First, this blog was on the Dr. Synonymous Show last night. I am now famous. You may call me Lady HPAA and admire my pill dress (made of hydrocortisone naturally). You can listen to the show here. Just note that the ACTH was less than 5 (<5) and not 5 as stated in the broadcast. Many thanks to Dr. Synonymous.

Now...on to the blood sucking.

When I saw the PCP earlier this week, my temperature came in at 96.6.

This is still, apparently, in the realm of normal.

However, it is a drop for me.

I used to be a 98.6 girl.

This past year, I've dropped to 97 and now 96.

Yesterday it was 90F outside.

I didn't turn on the a/c. Usually I am the first one to whine about the heat and insist on a/c. Not yesterday.

I just didn't feel it. It was hot, but I didn't sweat. I wanted a fan on me, but never felt like a/c was necessary.

Didn't even realize how hot it was.

Then, when the hubby started complaining about the heat and wanting a/c (first time ever, I always beat him to it), I realized if I really am 96.6 it probably takes me a while longer to feel the heat. Especially if hubby is a 98.6 guy.

No, my thyroid has not been tested recently. Come on. It would never be something that simple.

The truth is, I'm a vampire.

What? Why are you looking at me like that?

It's on the differential diagnosis list.

Really.

You probably just forgot.

Trust me, I'm a patient. I know about these things.

Tuesday, June 21, 2011

Phases of Cortisol Production

Once the HPA axis seemed to 'turn on' each taper has followed the same rough trajectory:

First there's the 'Oh wow! I feel GREAT! Tapering is going so well!' phase.

This is followed by my body screeching 'WHAT? You didn't tell me I was going to have to work every day. Bitch, I'm union. Suck this low blood sugar.' phase.

Then, eventually my body feels bad enough that it seems to grudgingly start doing what it's supposed to, the 'Okay FINE, I'll do it, but you're paying me triple time. Also, I'm doing this for ME, not YOU' phase.

I seem to be in phase two. I don't know why that is, but I'm tired of it. Suck it up, get it together let's go. There is no reason for me to feel like crap. None.

Although, I wonder how much of a drag the gut thing is on the system. This thing is marching toward an unpleasant endgame and I wonder if I will be able to hold out until the forthcoming appointment dates.

Monday, June 20, 2011

The Latest

I am tired today. Had a nice weekend. Worked out twice. Once on the elliptical, then went for a lovely walk. Saw lots of deer and deer babies up close and personal. Then my blood sugar crashed and I dragged myself around the rest of the weekend managing to get the groceries bought and keep the toddler entertained.

A hard core X-rated makeout session with some butter toffee helped. (Turns out grocery shopping + low blood sugar = toffee in the grocery cart.)

Today it was hard to get out of bed and get up. I'm still not feeling awake and it's almost 1pm. It could just be a toffee hangover.

I will go early to the endo appt later this week and get an am cortisol draw just to be safe ( I think I mentioned this, no?). Hopefully this is just a natural adjustment period after having been on steroids for so long.

I do recall that ending the steroids during past HPA axis suppressions did not necessarily correlate with feeling 100%. It took about a year the last time for me to feel human again.

Saw the PCP today and had some blood work (testing liver and ruling out h.pylori). We are scheduling a HIDA scan and I will be seeing a GI doc. Which I should have done much sooner, but it is very difficult to properly care for such a malfunctioning body. I feel like I'm trying to plug holes in the dam wall and I've run out of fingers.

You can only go to the doctor so much, you know? I can't keep up with all that needs to be done. I think if I did everything I was supposed to, I could probably see doctors continuously which...ugh not the lifestyle I'm going for.

My sincere hope is to be free of all but the most basic medical maintenance, but I fear I will never know what it is to live without some kind of medical constraint again.

Friday, June 17, 2011

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.

Thursday, June 16, 2011

Three Quick Hits

1. The toddler fell down the stairs and had a leg collapse while standing after the EI assessment. I should have known it was coming as muscle fatigue is a trigger, however, I flaked and forgot to watch her on the steps. Thankfully it was not a serious fall. I am annoyed that this 360 view is absent from the EI assessment.

(Also, I'm laughing remembering how they said any OT would be 'short term' which I don't think they realize it took a year to see some progress in PT--some as in we have more work to do because there are still deficits. I have the feeling they think if they just let her run with scissors she'll be fine, their naivete makes me giggle.)

She also had a big tantrum at her PT session and ended up throwing her shoes at the PT (who is the sweetest most lovely person). She was hot. She was tired. Her feet hurt from all the PT and she couldn't articulate it.

She felt terrible about it and sobbed all the way home. We are working on a way to make amends with the PT (who completely understands, but I don't want the lesson to pass the toddler by, you fix what you break).

2. I have stopped taking steroids. It could've gone either way and, in fact, when I listed the pros and cons, the up dose column kind of won. However, updosing wasn't much help last week so I stopped taking steroids instead.

While it's too early to claim victory, I think it's going to be okay. (Don't worry, I will still whine for weeks about withdrawal/insufficiency symptoms.)

I have an endo appt coming up and plan to do an am cortisol draw the same day just to be safe. I think we now begin to move into the next phase of this mess...

-Re-enter standing orders for more cortisol tests on the off chance I tank again. The fact continues to be, I had weaned and exercise brought me low. It's not enough to be off steroids, I need to be off them and exercising and working and parenting with impunity. The goal is a life, anything less is a failure.

-Writing a note to the pulmonologist who believes none of this is adrenal with an 'is to' message and instructions on how to taper steroids in the future.

-What other protections can be invoked? If I can't put some protections in place, there is nothing to stop this from happening again. It needs to not happen again. Really there's no excuse. If it's not a known, documented problem by now, there's no hope for medicine and only despair for patients.

3.My PCP still has not called me back re: the gut. Bwahahahaha. Isn't it amazing how this stuff happens and happens and happens? I'll give it another day before I bug them.

Wednesday, June 15, 2011

Gut Stunts

So I called the doctor about the GERD and diffuse abdominal pain that has been haunting me since Thanksgiving.

And their staff couldn't seem to grasp what I wanted.

1. Better medication for the short term.

2. GI referral for the long term. Time to get scoped and imaged out the wazoo.

I sense I confused them.

"What have you been doing to deal with it?" they asked me, I suspect trying to wrap their minds around how someone can walk around with a complaint for so long.

All I can say is they must have better experiences with health care than I do. Also, I know there are no gallstones and ultrasound imaging was normal as of early 2010. I'm weird like that. Paying attention and sh*t.

If they knew precisely how long I've dealt with this pain, off and on, they'd probably hang up on me. This has been going on since I was in my 20s, only just becoming daily in the past year. Ignoring it is a pretty ingrained habit at this point.

It was not until the GERD blew up in conjunction with intensifying pain that I paid attention.

GERD I can't ignore. It is pretty much the worst pain I have ever known. Worse than labor (lots of things are worse than labor FYI, like the stomach flu, seriously). Because of GERD, I understand why people kill themselves due to pain.

If every day of my life was GERD on a rampage? I don't know if I could do it.

Prior to GERD meds, my parent had many ER trips for stomach pain. They vomited daily. They couldn't sleep and now they are pre-cancerous. Prilosec etc... came to late for them.

Medication has worked for me for 16 years.

Why has it stopped?

More importantly, is there any way we can get to where eating chocolate is not an act worthy of Evil Knievel?

Right now things are slightly better, but there are a lot of rules I have to follow to hold it all together. It's time to figure out what is going on.

Tuesday, June 14, 2011

About What I Expected

The toddler had her EI assessment. She was being very coy and cute, which I always find adorable and the school staff was not immune either. I don't think any of them had any pants on by the time she was done laying on the charm.

They think she will qualify for OT but not PT. While there are gross motor deficits, they explained, she won't qualify under the public school standards. So basically, she does have a problem and should be in PT, but no public resources will be allocated to help her.

Which...sigh.

She's essentially borderline. Even with the OT, she just barely qualified (and maybe, when we go back for the formal report, they might change their mind and say she won't qualify at all, I don't know). I'm not sure if there were any other issues that came up in the assessment.

I get that there's only so much money, but borderline can go one of two ways. It either resolves on its own or it festers until kids end up even further behind.

I'm a fan of a more proactive approach because I know the toddler would not be improving if we hadn't arranged for some help. If they'd assessed her a year ago, she would have definitely qualified.

(Pausing to kick myself. Bad mommy. Baaaaad mommy.)

I'd rather deal with it now than leave it to fester, but what do I know?

I'm just the mom...who is apparently made of money.

Monday, June 13, 2011

Outspoken

I can't stand the commercials for crap food anymore. Especially the ones that act like fruit juice* is a health food or pretend that Raisin Bran is a whole food. As if they don't have a butt load of sugar. Or aren't highly processed, stripped of nutrients along the way.

So at the end of every commercial pushing juice, candy, chips, pop, I add, like an announcer, "Plus, when consumed as a primary part of your so-called 'healthy diet' it will give you diabetes, heart disease and increase your risk of cancer."

I did it in the movie theater last week and I did not care who heard me.

Thankfully, the hubby is tolerant enough to still associate with me in public despite my outbursts.

As for Raisin Bran (and cereal in general), I have been participating in a government/university extension food education program put on by a local parenting group.

They all know I'm a nutritional emo goth so were not surprised when I pointed out to the nutritionist that a serving of bacon has less sodium than a serving of Raisin Bran.

"Bacon has too much fat," she said to me rather smugly.

"Well, I've read the current thinking is that science hasn't found a link between heart disease and fat," was my response.

And she did not know what to say to that. Other than to take away all the food labels she'd passed out before I found something else to nitpick.

When I told her we don't buy cereal because we consider it to all be poison, her head exploded.

Truth be told, I'm not trying to make anyone's head explode. However, nutritionists that think cereal is a good thing to eat do not pass muster with me. Cereal is highly processed crap with a lot of sugar. Even the advertised 'high protein' or 'flax' cereals are way too high in carbs to be healthy.

The same goes for yogurt. Yoplait, Dannon, Trix, all the commercial yogurt brands have as much sugar as pop. Compare the nutrition labels sometime. So when I hear an expert telling people to eat more yogurt and acting like Yoplait is a good option, my head explodes**.

(By the way mainstream media is starting to dog yogurt. I've seen print articles pointing out how much sugar name brand yogurts contain.)

I do have 2 nutritionists in my family. One gets it, can see the gaps in their education and we actually have some great conversations about food. The other is lost in low fat everything-in-moderation land, confuses ketosis with ketoacidosis and runs away when the topic of nutrition comes up. Most nutritionists seem to take after the latter as opposed to the former. In my experience anyway.

Sure, I don't have a degree, but I've read thousands of pages of text and studies at this point. Enough to have a well informed, well researched opinion. Something I can't say for most of the professionals out there giving nutrition advice.

Until we get real about food, we aren't going to make a dent in the diabesity epidemic.

*Full disclosure. The toddler gets 2oz of juice mixed with water a day. After that it's lemon/lime water or plain iced tea or sugar free popsicles.

Yes, I would like to skip the juice entirely, but she screams for hours about it. Easier to just use the juice like a water colorant so she thinks she's getting something.

No, I'm not thrilled about the artificial sweeteners in the popsicles for her, but she eschews the reduced sugar ones.

**Is anyone wondering what the heck the toddler eats for breakfast? Eggs (sometimes with bacon!) or organic Greek yogurt. Sometimes plain, sweetened with fresh fruit or reduced sugar jam. On the side, she gets an almond cookie (protein!) or fresh fruit or, if I haven't baked, the best quality granola bar I can find.

(I have made homemade yogurt and we think it's delicious, but the toddler hates it for some reason so I don't bother with it.)

Friday, June 10, 2011

How I Feel Exactly

Sometimes I spend time looking at the search results that bring people to this blog and yesterday I ended up in a forum reading this:

"An addisonian crisis will leave you weak, confused, unsteady on your feet and generally clumsy, it'll cause tremors (hand shakes), you'll pee like a maniac, be less able to speak clearly and articulately, etc. In a lot of ways you'll look like you're drunk to the people around you." (Source.)

It may have been an adrenal crisis for them, but this is how I feel a lot of the time and I would not say I'm in crisis. However, this pretty much sums up how I feel. Suddenly, reading that, I don't feel so alone.

The clumsiness is HUGE and it is something other adrenal patients have mentioned. I drop things a lot, especially with this last taper.

The yogurt at the grocery store? It flew like 10 feet down the aisle, cracked open and left a long white skid mark on the floor. Just from my flubbery fingers. I'm sure the people who saw me thought I was trying to do some kind of weird food bowling. It probably looked like I did it on purpose too.

I've lost count of how many times I go to tip the bottle to shake a vitamin into my hand only to end up throwing them all on the floor. Sometimes I end up dropping the bottle too. I can't pour water or juice without missing the cup. So glad the toddler is not a baby, I would probably drop her too.

Just to show I'm not inherently clumsy, prior to the HPA axis suppression, the toddler when she was 4 months old fell off the ped exam table. Out of three people in the room, I was the only one able to move fast enough and catch her head in my hand just before she hit the floor and set her upright back on the table. I moved supehero fast that day. Total miracle mom-lifts-car-off-child type save. My once nationally ranked (in his country) athlete husband? Hadn't even moved. The ped just gaped and she was closest to the baby!

To do that now? No way. I'm on a time delay.

I also have bruises up and down my legs because I'm always bumping into things. Always. If there's something I can ram my shin into, you can bet I will. It's like there's a gravitational pull.

The clumsiness drives me nuts. Very annoying.

And the drunk thing. YES. Totally. Except I've never been drunk (alcohol tastes like troll ass to me) so I go with loopy when talking about it.

The sounding like a drunk is a huge problem. I have such a hard time communicating at times. I had a real j-o-b phone screen interview this past week and, in practicing what I was going to say, I could not string words together. I couldn't come up with words I was looking for. Sentences were stilted and full of don't-hire-this-nut awkwardness. Thankfully, my pre-interview nerves must've prompted an adrenaline surge and I did fine in the actual interview.

Trying to write when I'm in this state? Is very difficult. Compared to my skills prior to HPAA suppression and now? Very noticeable difference. I have to work twice as hard and edit more than I ever did (note, no editing or hard work on this blog, not that you hadn't already noticed).

The only thing I don't usually get is the peeing a lot. I drink a lot of water so it's hard to not pee a lot just normally.

One interesting data point from that forum, I'm starting to find more people reporting vomiting as a steroid withdrawal symptom. In the past, I had only ever found reports of vomiting associated with adrenal crisis.

Thankfully, as far as I can tell, I don't vomit with steroid withdrawal. Although I do kind of look back on that vomiting episode a few weeks ago and wonder. The GERD/Gallbladder thing is still the most likely suspect though and it finally seems to be improving (maybe).

I don't know. None of this isn't stuff I haven't blogged about before. It's not news, but that one little paragraph just resonated so strongly with me I had to bore you with a post on it.

Thursday, June 9, 2011

The Normal of Tired

To wrap up loose ends from the last post... I have a meter but no strips. I once had a forward thinking PCP who wanted me to check my blood sugar just because of the insulin resistance, but they don't take my insurance and they missed a few diagnoses/didn't listen to me that it's not worth it to me to bankrupt myself to continue with them. So the strips ran out a long time ago. (Do strips require a prescription? I can't remember.)

So maybe I was low. It's just weird. Because I purposely eat when I'm tapering to avoid lows. I know I'm at risk and my efforts to avoid the problem have been pretty successful in the past so the whole thing was just odd.

The taper has been generally fine. I am mucking things up a bit by doing too much. I've started lightly exercising, trying to get back into a routine. Yesterday I spent 3 hours in 95 degree heat. We were at a splash pad, so I was able to stay relatively cool and we drank like fish, but it was too much for me. I just never came back from that.

Today I'm updosing a bit and then will go back to 2.5mg tomorrow. Just in time for a hot day at the pool, preceded by a toddler ice cream party which is similar enough to a birthday party to make me cringe. Let's hope my wishy-washy body is up for it.

At the moment, I'm waiting for the steroids to kick in and get my motor going. Once I finally feel awake/alive, the toddler and I will be running a marathon of errands and then I will probably take a nap.

Monday, June 6, 2011

Pleased

It's down to the wire now and it's trickier than ever, but I tapered. Again.

I don't know, it just didn't feel right to updose and it's not like I can't updose if I need it, I can. So why not shoot for the stars?

On 2.5mg of Hydrocortisone today, I...

-stopped at the dry cleaners to pick up our ozoned drapes
-returned a too small sand box at Toys R Us and bought some other stuff for the toddler to help with hand-eye coordination OT goals
-went to Target and spent $20 (which is a miracle, Target is a money suck) to update the toddler's dance wardrobe as her class starts tomorrow
-picked up a lunch
-went to park and dealt with toddler tantrums over the swing. It wasn't swing-y enough???
-went to the grocery store with an whiny toddler

Felt pretty good until the grocery store, at which point I wanted to keel over and spoon the cold freezer doors in the ice cream aisle.

I've felt worse and clawed my way through, but it was weird. I started shaking and sweating and my mind wobbled like jello. If you'd asked me what 2 + 2 was, I would've said Pluto.

Thankfully the shopping was pretty much done, but not before I dropped a bunch of yogurt all over the floor. The shaking made me clumsy. (Of course the yogurt broke open and made a huge mess while everyone watched.)

It was not low blood sugar, I had just eaten and made sure to include some carbs in the form of cherries. Or maybe it was low blood sugar and I should've eaten more cherries? Either way it was somehow taper related.

I would like to take a nap, but the toddler has informed me it's sand box time. Hopefully the hubby will be home from work sooner as opposed to later today.

Sunday, June 5, 2011

Summer Day Picture Post


Baby birds at my parents' house. They flew the nest Memorial Day and we got to watch them learn to fly. Very cool.
.
Click the picture to make it bigger, it's too small here to do the birds justice.
.
.
.

The towel that almost burned down the house.
.
.
.
.
.
.
.
Experimenting with low carb appetizer ideas. Grapes and cheese are such a classic, but grapes are carby. How about strawberries and brie? It turned out pretty tasty.
.
.
.
.
.
A low carb lunch for the hubby, nothing for me as I'm more tasting food right now as opposed to outright eating due to heartburn.
.
.
.
.





Getting ready for summer fun. Bring it!

Not pictured? The fact I slept until noon,against my will. We still got a lot done though.






.

Friday, June 3, 2011

A Bit of This, A Bit of That

1.The asthma has done a great job of making my lungs feel like they've been scrubbed on a cheese grater. With gusto. It is abating, bit by bit, this is not serious asthma, just painful asthma.

Further I am tired. Whether I am tired enough to need more steroids is still open to interpretation. Possibly I am in the denial stage of grief.

I am so close to breaking free, to have to significantly updose again, well, I worry it would reset the clock back to zero. Which would basically crush my soul.

2.I purposely used just my first initial on the ebook. M. Last Name. Now I'm getting what passes for fan mail amongst the business crowd and they all assume I'm a guy. The language used in the emails is different too, lots of guy oriented slang.

I wonder what would happen if they knew I had boobs and a vagina?

3.I think my gallbladder needs to be Raptured the hell out of my body. I am having problems. No stones, but I need a function scan to see if it's working (this was on the schedule but I got pregnant and it had to be scrapped). I suspect not and my body seems to be on the path to gallbladder implosion, the ante is ratcheting up.

The pain is daily, has been daily since Thanksgiving. Now heartburn is a problem despite avoiding food and taking extra Prilosec. Nor do I think that vomiting episode a few weeks ago was a bug, I think it was a GI mutiny.

This means at some point between now and the next decade, I will go see someone about it. I've been thinking to go to the same GI who treats my parent since this GERD GI crap is familial. There might be some benefit to working with someone who has seen how the genes play out.

Maybe I can avoid Barret's, although my parent has not been so lucky. (I know gallbladder is not specific to Barret's, but GI crap is all related, at least I think so for me.)

4. The toddler made a huge mess on the carpet with her jello. Smeared it right into the carpet she did. When I asked her to clean it up, she began to sob and meltdown.

I hadn't yelled at her. Had remained very calm in fact, but she was distraught.

Finally I said, "I still love you. You are still my special girl. Please clean up the mess."

Worked like a charm. It was really something. Gonna have to remember that one.

Thursday, June 2, 2011

Bump in the Road

The asthma is riding me hard. I actually slept okay, rescue inhaler clutched tightly in my hand, but this morning has been a battle. If only my legs were this taut...

My body seems to have finally realized the steroid level has dropped and ZOMG! gone into Defcon 5 mode as a result. This physiological panic attack mainly involves lots of painful charley horses.

So I updosed from 5mg to 7.5mg and hopefully that's enough to cushion the blow.