Saturday, April 30, 2011

Polishing My Stupidity so It's Bright and Shiny

At the moment, I am thinking I took my BP meds twice.

Which means, a double dose of the asthma inhaler and acne antibiotics as well since they are all taken at the same time.

I am not totally sure. Can't remember.

The same way I seem to have forgotten the area code that goes with my cell phone number.

And the way I can't remember what the Japanese call it when you fall on your sword to kill yourself. (Seppuku, I just googled it, after four days of waiting for it to come me. I almost decided it was Hari Kari, which oh, look, is the same thing as Seppuku. Huh. Unfortunately, I no longer recall why I needed that word. I think it was a conversational point.)

And how I took some wrong turns the other day because the brain no workee. One of these days, I'm going to leave for work and end up in Florida or something.

But I think I actually may have taken all my meds twice.

If only I could remember.

The fatigue is bad right now. I hope I can recover. I think it's all sleep deprivation, so if the root cause is addressed I might be fine. I would be in bed right now except for the whole did-I-or-did -I-not double dose question.

The muscle cramps are bad too. Sharp and insistent. Hubby and I managed to sneak in a movie tonight*. We were late and he was urging me to go faster and I couldn't.

Because the arch of my foot had assumed the fetal position.

So I guess now I pound salt? Good thing I like olives!

*Dylan Dog. It was terrible. They should be ashamed to be in the same genre as Buffy.

Thursday, April 28, 2011

Up Dose

Mo left a comment to the previous post, which, in part, said...." Last doctor appointment I mentioned my aching left side adrenal...she looked at me like I was nuts."

My main response is, why do doctors act like they know everything? Especially when treating someone with a rare disorder?

I never had the back/flank pain before. This was the first time for me. My adrenal glands were so inflamed I could feel their outline in my body. When my lungs are inflamed, I can feel their borders as well.

It's not a woo-woo concept. If things are inflamed or otherwise irritated, you will feel it. Maybe not as precisely as I have, but you'll feel something, which is how the body is supposed to work.

Anyway, I'm wiped.

Possibly from not enough sleep. The weather has been as rowdy as a biker bar. It smacks into the house, rattling the windows and causes us to check for tornado warnings at 2 am. We have a huge, ginormous oak tree in the backyard and the wind was hitting the house with such force, I began to fear the tree would lose a major branch or we would end up in Oz. Not a situation conducive to sleep.

Since I can't absorb anything less than an ideal life... I took 10mg today instead of 7.5mg and I still feel like a zombie.

So we'll see. I'm still hoping that this will all come together in time for me to be off steroids by June 1st, but I can tell it's going to be a fight.

Monday, April 25, 2011

Four Way

1.Happy post Easter sugar crash. How was your jelly bean buzz? I was flying hippity hoppity HIGH.

2. My energy is way up and I feel pretty good. Still have muscle issues, but they are different now in that they're more specific. Sharply painful spasms target my right quadriceps and left bicep--those will stop me in my tracks. The calves and feet have the more typical, generic spasms, which don't necessarily hurt and respond well to changing position.

But I went for a walk and danced off the sugar on Easter. After which I had to take an involuntary nap and woke up with wheezy creaky lungs. So, overdoing it a bit.

Also, beyond exercise, I got out to see some movies! (That passes for high excitement around here.)

The only thing that puzzles me is the adrenal glands still hurt at times. Particularly if I am tired or feeling spent. I wonder when that will go away or is it permanent?

3.From the previous post, responding to comments re: the toddler and PT:

I don't know what is up with the falls. It could be related to growth. She's been as big as a 5 year old since early 3 and would not be out of place with 1st graders size wise now. I think it's worse with growth spurts which makes me wonder if maybe something isn't keeping up with the growth curve in her hip/leg.

Motor planning disorder could be on the menu. I've also been guided to info on proprioception issues by other special needs moms.

The PT has been able to identify and document the weakness, which was enormously helpful and validating. The toddler really was behind on her skills and not at age level.

She has made progress. It has been so slow though that I didn't really see it until I was filling out all the EI paperwork.

4.I have sold some ebooks! I've made like five whole bucks. Ha. But it's a good sign and I'm gearing up for my third ebook project, aiming for something more marketable.

Saturday, April 23, 2011

Of Tools and Therapy

I've filled out paperwork for an Early Intervention assessment for the toddler. Which is odd timing as she has progressed from failing to meet milestones to now meeting them. (Yay!)

But with adding OT into the mix and the fact that each PT session is already $250, we can't afford it. We've never been able to afford it. We've just been hoping it will all work out.

Further, she still falls, even at PT. She also fails to extrapolate her success in PT to any other venue, i.e. the rest of her life in the real world.

She flunked ice skating.

On top of that, the specialist is a tool who has rescheduled our February 2011 appointment twice, making it now late June. So when I called to ask for the OT prescription (per the PT's instructions), the doc refused to give it to me as they haven't seen the toddler for a year.

Never mind it's their fault, not ours. It is kind of criminally irresponsible, in my mind, to deny a child help just because a doc can't manage their calendar. The ped won't write the script because it should come from the specialist, although they can probably be persuaded given that the specialist is so pathetic.

(Note: I don't think the specialist is terribly concerned about the toddler. She has no diagnosis. They can't find anything wrong. So who cares, right? I do. Because when she is in a puddle at the bottom of the stairs, bleeding and sobbing, it falls on me. Either have the balls to tell me you don't want to provide care because you don't think anything is wrong or tie on a sack and do the right thing.*)

So for all those reasons, it seems like a good time to see if EI has anything to offer. PT and OT is expensive. The toddler needs support to integrate her improvements into her life (I try to help her, but all I get from her, at this stage of development, is loud opposition).

My only concern is I think the toddler is pretty borderline, in my opinion. For example, the preschool couldn't believe she was in PT. They also don't have stairs and probably chalk the falling up to tripping, failing to notice there was nothing to trip over. I mean, she's had problems since she started walking at 11 months yet I didn't notice until she was 2 1/2 and I'm her momma.

She compensates well and she's not in the picture that pops into most people's minds when the topic of kids with special needs comes up. So I will be surprised if she qualifies for any public resources.

*The PT has given me the name of another specialist and I got the nudge wink from them that tells me the current specialist really is a tool.

Wednesday, April 20, 2011

Nothing Bad Can Happen

I tapered.

Just 1/2 a pill.

No, I wasn't sure it was a good idea.

But it has been fine so far. Mostly. More on that in a moment.

I know some of you reading think this is too fast. You may end up being right. In terms of navigation, I'm working blind at this point. The signals my body broadcasts are mixed.

Yes, taper.

No, don't.

Maybe taper.

Taper tomorrow.

How about next week?

Here's the weirdness, the HPA axis is working but it also seems to struggle yet taking steroids isn't the answer. So???? Damned if I do, damned if I don't.

As an example, I got caught outside in a rainstorm and lightning hit very close by followed by a boom so loud it shook my chest. I began to run in the rain and my thoughts went something like this:

'Don't get scared. You can't handle being scared.'

And then my gut clenched.

'No, no, no. I said NO fear, dammit.'

But it was too late. The flank pain flared and my legs went into sad zombie shuffle formation as a wave of fatigue took out my knees.

I was fine up until then. No signs that the steroid dose had changed and then, lightning. I did recover after a few hours, so that was good. But certainly couldn't exercise after that or do anything terribly exciting. Too risky.

I can see if there is a pile-on of events that I may be in trouble. Like sleep deprivation followed by a dog needing surgery. You know, life.

So if I want to recover and be completely off steroids, nothing bad can happen from here on out. Nothing.


I hate the word benchmarks. My former boss (who I adored) used to torture me with benchmarks. Because he wanted charts to show performance. Well, when you're working with about 60 countries, all with a different idea of a successful project, it's hard to condense disparate date points like that into one neat chart.

Benchmarking, I told him, is a full-time job. You should hire someone.

He refused.

Do you want me to make charts or make millions of dollars? I can't do both, I huffed. (I was way overworked in an understaffed department and did not have time to pee let alone fuss with a lot of silly paper peddling.)

He said, We need a chart. Get on it.

So I made up some generic charts to keep everyone happy and shook my head every month about the whole thing. All fluff, no substance. Drove me nuts.


Here are my living-with-chronic-illness-benchmarks, the indicators that tell me if I'm good or in trouble.

1.If I am dancing, I'm feeling good. Today I was dancing in the dining room. With the dog. If I'm dancing, things are looking up.

2.During an elliptical workout, if I can get the RPMs to 55-60, I'm good. If I'm struggling to get out of the 40s, the adrenals are giving me a hard time. Those are the workouts where I showed up, but nothing much happened beyond that.

3. No napping = good adrenal day.

4.Good mood = good adrenal day. Bad moods are either I need more steroids or I have too much. Irritability, easily frustrated is usually too little steroid. Dark moods are usually too much.

5.Walking speed. If I'm doing the slow, sad zombie shuffle that means the adrenals are tanked. Normal speed = normal. The hubby notices this one too. Feeling bad = slow.

6.Stretch marks. Yes, stretch marks. Red = too much steroid.

7.Hair falling out. Is either PCOS or adrenal tankage.

8.Acne. Is either PCOS or too much steroid. Steroids tend to make it go cystic.

9.Mental focus. Not missing the turn off to my road, remembering why I'm in the kitchen, those are all good. Bad is driving through stop signs. Forgetting what I'm doing or where I'm going and generally feeling like my brain is floating outside my body.

10.Eating. Forgetting to eat = adrenal tankage. Insatiable appetite = steroids f*cking with me. Too tired to cook = adrenal tankage as well. I hate being too tired to cook.

Monday, April 18, 2011

Prednisone vs. Hydrocortisone for Adrenal Suppression: Pros, Cons, and Tips

One of the things that always puzzled me as I read through medical journals and textbooks was one would say to use Prednisone while another would say to use Hydrocortisone for adrenal suppression. These were always one-off sentences, almost throwaways and there was never any elaboration on the why of it. Nor a comparison/contrast of one steroid over the other.

I think I know the why part of it. Maybe.

It's a half life thing.

Prednisone sits and sits and sits in your system. If memory serves, the endo calculated a half life of slightly over 24 hours.

So if you take Prednisone every morning, there is never a time where you are without and this can work against HPA axis recovery.

Hydrocortisone, on the other hand, has a half life of 12ish hours. So you have at least half a day without any steroids in your system, time in which your brain is supposed to go 'oh sh*t, we need steroids STAT' and trigger natural steroid production. The 'oh sh*t' moments help the HPA axis recover functionality.

Now, when I was very first diagnosed as being suppressed, my am cortisol was 1.3 and Prednisone was used to treat it. I am torn on whether or not this was a good thing. At a level of 1, your body needs some help--a cortisol of 1 is not really compatible with life--and it's probably not a great idea to have a short half life steroid, at least not initially.

However, I don't think we needed to use Prednisone the entire year and I wonder how that prolonged the recovery. Also, I ended up with a pretty bad case of exogenous Cushings from the treatment, which tells me the docs weren't doing the greatest job of calculating my dose.

And this was with regular ACTH challenges. So they had data. I don't know what they were thinking. If I'm in the mood for masochism, I'll find some old pictures and show how bloated my moon face was back then. I even had a hump! I might have benefited from switching to Hydrocortisone during that episode.

Of course switching from Prednisone to Hydrocortisone this time was not easy either. It took me a very long time to adjust. So long the endo even said 'Wow, that's a long time' when I told him that I didn't adjust until February.

The pain. Oh God. The pain.

It was enough to make me fantasize about narcotics. Or drinking. Or narcotics and drinking together.

I don't drink.

I hate narcotics.

But I thought about them, very fondly, from December through February.

What I ended up doing was splitting the dose even though the endo told me not to. I came clean last week and told them I did it anyway in the hopes of helping other patients down the line. It made life livable and it did not impede recovery as far as I could tell. (And the endo doesn't seem to hate me for being such a rebel, I was clear the situation was intolerable without split dosing.)

Knowing that the goal was to be without steroids in my system as much as possible, I did the split doses all before noon. To be clear, I didn't change my total dose, just split it in two.

I took the first dose in the morning when I got up (usually between 7 and 9am) and then the second dose between 10 and 11am. This made it so that the excruciating muscle pain did not hit until after I had finished my evening job and put my toddler to bed.

At night, I used Tylenol pm or Advil pm or Benadryl to help me sleep through the pain.

Gradually, over time, I took the second dose earlier and earlier until it merged with my morning dose. That was the point where things seemed to improve. The pain faded. I began to exercise. Tapers started happening faster and faster.

Hydrocortisone has not caused severe Cushings like the Prednisone did, but we've also been working with much lower doses. My memory is a little foggy, but I seem to recall starting at 20mg of Prednisone last time and camping there for months, which is a lot.

Prednisone seems to be less painful, but also less effective than Hydrocortisone. Which is not ideal when you have the lazy stubborn azzhole HPA axis I do.

Sunday, April 17, 2011

Stuff in My Head

1. The ebook can be found on Amazon. It's a short ebook of recipes. A test case. Which I am glad I did because boy is the Kindle publishing platform so first generation technology.

It has the grace of Seinfeld's Elaine on a dance floor.

I have no idea if the right file uploaded, because the ad copy hasn't changed and I did rewrite it, load it and submit. It says it went through successfully, but I'm a little doubtful seeing as how nothing has changed.

So if you buy it and get a bunch of gibberish, it's not me, it's Amazon. I'm sorry.

Also, the deal that Kindle doesn't support color photos? Sucks. They need to fix that.

Because I make salads that look like this:

The so-simple-it's-not-really-a-recipe for this salad can be found over here.

The ebook is below.

2.Both of our cars died at the same time (what are the odds?). One was repaired. The other? Has been to two mechanics. Who have driven it a total of 140 miles and have yet to reproduce the problem (stalling).

Would anyone like to guess where our tax refund has gone this year?

No. Not long term savings*. Or to medical bills.

The cars.

And the dog (which I guess is a medical bill of a sort, but not any of the ones piling up, which are the ones I worry about).

And the cars.

More to the cars.

All of it to the cars.

Whatever the Money Fairy giveth, the Surprise Expense Fairy taketh away.

I should just have the IRS make out the check to our mechanic/s.

*hahahahahhahaha. I can dream, right?

3.The toddler is so invested in her current cantakerous contrarian-ness that she's even pouting, crossing her arms and telling us 'no' in her sleep. The hubby went to check on her and I guess she bolted upright and went into the pouty 'no' routine.

The same night, I woke up after having lengthy dreams about arguing with her all day. 'Stop that' I told myself, 'Really, self? This is what we're going to dream about, after doing it all day? Please.'

4.I'm tired, but not napping. Which is good. So maybe this coming week will be a good one. Other than the fact it's going to rain all week long.

Can't decide which is more annoying; non-stop rain or non-stop snow.

Thursday, April 14, 2011

Meandering of the Mind

I feel better. More upright. More able. The hubby hasn't had to cook in a few days. I went for a walk. I feel like I can (and should) give up some of the caffeine I've been trying to prop myself up with.

This morning though, muscle cramps woke me up. I would love to sleep more, but my body wants the steroids asap now.

Which means, no tapering this week. Maybe next? If I'm lucky.

To dispel rumors, I am not updosing all the time. I haven't updosed recently except for that one time where I wasn't feeling so hot, which was what? 2 weeks ago? More?

Or was it last week?

I have a terrible sense of time any more.

I think it's because, secretly, I'm 90 years old.

And not the kind of 90 that's still working full time.

More the kind that can't remember her name and drools.

(There's a 97 year old show off out there still teaching full-time. FYI. Just in case you were feeling accomplished or anything.)

Anyway, I have two projects nearing completion. I'm testing out Amazon's ebook publishing platform (which is very clunky and slow and difficult) to see if it can provide income.

There's even a marketing effort and I'm quite pleased to report 6 people want review copies.

Okay, 6 is not a lot. But I'm just happy I'm counting fingers on a second hand.

One project I can share here. The other I have to keep separate because I'm tying it to my professional profile online to, hopefully, boost my resume and improve networking ops. Employers can peek into my expertise so they can run screaming without having to suffer through an interview. Saves me time and I earn royalties so...winning!

Wednesday, April 13, 2011

Next Move

I'm really loopy right now. Just so you're warned. If you're wondering why I blog when I'm so impaired, it's because I'm no good for anything else.

I'm wiped because the endo appt stressed me out. So now the adrenal glands ache. For the first time in a long time. Which is disheartening.

My only frustration with my medical care is that it seems no one really understands the physiology.

According to the endo, I still just have steroid withdrawal preceded by suppression.

I don't agree. I think the suppression has been much more significant than doctors realize.

There is such a marked shift now that the HPA axis is waking up. My entire body has changed. It's not withdrawal, I can feel literally feel the difference.

The suppression was so poorly handled last year and the lack of any follow up testing once I weaned the first time, compounded things. There's a legacy here, a potent one and it just doesn't seem to factor in to my care.

However, ultimately, despite different points of view, things are progressing. The endo did the most intelligent thing yet in this debacle and that was switching me to Hydrocortisone with its shorter half life. Best move yet. Going to add that to my steroid playbook for future reference.

I requested a standing order for an am cortisol blood draw and, surprisingly, got it. If I tank again, the goal is to get the blood work done before starting steroids so the doctors have objective proof that can't be dismissed as easily as I have been to date.

The big question now is, will I be able to stay off steroids once I'm done weaning (which should be sometime in May if things continue to go well)? Exercise is a problem. Stressful situations are a problem. Just run-of-the-mill whitecoat anxiety can usurp the rest of my day. (How lame is that?)

The other big question, if I tank and the test comes back as low cortisol, what do I do? Is it time to travel and see doctors who do adrenals all day every day? Or do I chalk it up to the HPA axis still being in recovery mode?

It's hard to judge because, as I've mentioned before, all the literature says you updose for illness or surgery for up to a year after HPA axis suppression. The implication is just regular old stress or a hard work out should be okay. What does it mean that it's not okay for me?

Tuesday, April 12, 2011

Punch, Squash and Slogans

Our labby love is home, less one tooth. Very doped up. Whenever she sits, she starts weaving and then leaning until she has to lay down.

Drunk doggie.

It wasn't really the lack of dental care on our part. More her habit of eating sticks. She cracked her tooth and that's how the infection started.

While she was in surgery, I spent the day...squashing bugs.

For hours.

The lesson? Following a low carb diet means you really shouldn't hang onto a box of pasta for four years.

Because it breeds.


Lots and lots of bugs.

That literally came out of the woodwork after our first warm Spring day. I think they had an orgy in my cupboard.

Yes, my kitchen. Den if insect iniquity.

Ha. I should get a T-shirt made up.

It was gross, but manageable. I tried not to think about the hot buggy sex that must've taken place between boxes of Jell-O.

The hubby brought in the blow torch (his patented bug killing system) despite my concern we would die in a house fire. Somehow, he was able to torch the (flammable!) wood on the cupboards in a way that killed the bugs hiding in crevices without igniting a bonfire.

His T-shirt would read: I kill bugs with a blow torch. Or maybe My blow torch is better than your fly swatter.

The kitchen is squeaky clean now. With a lingering scent of 409 mixed with high octane flames*. I'm punch drunk on lack of sleep and the fumes aren't helping.

It was a very weird day yesterday. I am glad it is over.

On deck today. Endo appointment.

*No I don't think this is a particularly good combination but the hubby is a little...nuts about this kind of stuff. He once attacked our Christmas tree with a can of Raid in the living room and I had to spend the weekend in our bedroom due to the fumes.

Monday, April 11, 2011

Salvage Operation

The toddler was up for the damn day at 4am.

We were not ready for that.

Here's a lifesaving tip: Don't wake me up when it's sleeping time.

And no, I have no idea how I managed the newborn year. Oh yeah, I quit my job after not sleeping for three days straight, which followed months of little to no sleep.

Another lifesaving tip: Don't count on hubby to wake up when you need him. He's on a time delay. By the time you've actually roused him to consciousness, the thieves have already stolen anything of value and set the house on fire.

Also, there seems to be a tooth theme in my life. Our much loved black lab has infected teeth and needs surgery. Today.

Now, she? Does not floss. We have tried brushing, but not with much enthusiasm. Which probably explains the infected teeth.

We dropped our labby off at the vet and I hauled the muy cranky toddler (and equally cranky momma) to pschool. Where I realized she was hot, clammy and clinging to my leg in an uncharacteristically introverted fashion.

Looks like my mommy radar was on a time delay of its own today.

You know what sucks? Realizing how much your day is going to blow chunks at 4am. The sun isn't even up yet and you're already screwed. The unpleasantness of this knowledge is compounded by the impaired ability to manufacture energy.

I was finally feeling more awake, more normal. So call me stupid or selfish or whatever other horrible adjectives that best describe my pettiness, but I was really looking forward to getting back on track.

To the point where I'm lacking grace when faced with the current derailment.

Sunday, April 10, 2011

Imperfect Design for Imperfect Patients

Multiple times a day, without fail, I show up and have some kind of interaction with an asthma inhaler.

Whether or not any medication actually makes it to my lungs is a whole different metric.

The last few days the asthma has been a cranky monkey humping my back.

Today I finally thought to look at the counter. Zero and who knows for how long.


If I were in charge, I would probably hire new product design people. Zero should never sneak up on an asthmatic.

I do check the counter, but it's still very easy to miss when the inhaler is empty. It's not readily visible. You have to remember to look, which is just asking for trouble as I'm absentminded to the point of being senile at times.

Advair has a decent counter design. It's placed so that it's visible every time you use the inhaler.

But I can't use Advair. It messes with my heart. So I use other inhalers, that essentially had the B team of product design people.

Basically the inhaler design assumes the patient is perfect and never has a lapse in memory.

Yeah, right.

Friday, April 8, 2011

Change with Value Judgment

"I want to start exercising again," the hubby said ruefully rubbing his stomach.

"I know," I said. "I'm just tired. Maybe next week I'll have more energy."

(Yeah, the exercise thing didn't last long with this latest taper. I want to exercise, I think about it, yearn for it even, but it takes me about 4 hours to feel conscious after getting out of bed. My main exercise is finding larger and larger amounts of caffeine even though there's no evidence it's helping.)

We tried to go for a walk, but the toddler pitched a fit the entire way making it a miserable endeavor. By the time we got home, I was physically and emotionally exhausted.

I'm just tired. I don't think an up dose is necessary, I think this is just how it's going to be. I haven't had flank pain, barely any muscle cramps, no major signs of adrenal strain.

Things are different now. My body has changed. This must just be life with a functioning HPA axis while still tapering off steroids.

Tired tired tired blech ugh blah.

So not loving the new me. May this pass quickly.

Thursday, April 7, 2011

How We Won the Tape War

More toddler PT stories today...this time we got the tape on her legs. To do this, we played 'doctor' a lot at home using blue painter's tape and I made sure to prepare her before the appointment; that taping was going to happen and that the expectation was for her to cooperate. I also had a properly hyped reward ready for when she was done.

However, the PT pulled me aside to explain that, while the taping had been successful, the toddler had behaved so egregiously during their session, she'd lost her treasure box and sticker privileges. The PT was worried I would think she was being mean.

"Oh, please." I waved my hand in a dismissive gesture. "I just feel less alone. It's nice to know it's not just us." (Where does the support group meet for parents of 3 1/2 year olds? I need to go.)

Then the PT was kind enough to share she felt we were handling all the testing well. Each time the PT refused to engage with or tolerate the toddler's behavior, the toddler stopped and reined it in.

So a billion points to the 'rents for being consistent about consequences.

Unfortunately I think think score is still in favor of the toddler. She's not just exasperating the snot out of us, but professionals with degrees who work with kids for a living. Clearly, the toddler is a pro and we are just rank amateurs. She is so going to kick azz someday, I just hope a)her legs are strong enough for it by then and b)we all survive the growing pains.

Parenting. It's not for the weak. Or the adrenally exhausted.

By the way, the super special surgical tape that is supposed to stick for weeks? Lasted about two minutes in the car. Despite being covered by shoes, socks and pants. Sigh.

Wednesday, April 6, 2011

Toddler Tape Debacle

Physical therapy did not go well for the toddler yesterday.

In fact, she bought herself an OT assessment for sensory issues.

They wanted to tape her feet. Because she fell four times in ten minutes at therapy. Tripping over air.

She lost her sh*t over the tape.

I was called back and tried to bring her down from DEFCON 5.

Didn't work.

It was one of those awkward moments where your impotence as a parent is exposed. Where everyone can just see how you suck and can't control your ornery kid and WTF is wrong with you.

But I wasn't about to violate her personal boundaries, pin her down and force the tape on her either. Which seemed to be the only option available.

Not that the therapist suggested that, but I wondered if I was being judged for not suggesting it myself. Should I have? I hope not because I don't think it sows anything I want to reap later.

When it comes to tape, I'm of the mind that it's her body, her choice. Especially since this particular tape is strong enough to rip off skin if she yanks it off in a conniption fit.

We did the 'put the tape on mommy' and 'put the tape on dolly' bit. The toddler still shrieked when she saw the tape being moved toward her leg.

We tried to dialogue with her. 'Are you afraid it will hurt?'



Didn't work.

"Is she coming down with something? I've never seen her like this," the therapist said.

"Uh, I don't think so. This is the toddler uncensored. We get this at home. By the way, we can't even get band-aids on her when she needs them. This tape idea might be a stretch."

So we abandoned it and I was dismissed to the waiting room to fill out an assessment for sensory issues.

On the way home, she sobbed and thrashed and kicked in the car seat.

"No music!"

"I'm sweaty!"

"I'm wet!"

"My sunglasses are wet!"

"It's too windy!"

"Did you have a hard time at therapy today, honey?"


"Was therapy stressful?"

"Yes." Sobbing hiccough.

"I'm sorry. Go ahead and cry if you need to."

And she did.

Monday, April 4, 2011

Stupidity and Danger, Except Boring

I have tapered down to 10mg of Hydrocortisone. This is a change from 3 to 2 1/2 to just 2 pills.

This could be a bad move.

But if I don't have to cut pills, I would prefer not to.

Yes, my reasoning really is that stupid. Hey, nothing ventured nothing gained.

Needless to say I am really tired.

And pushing myself.

Friday I took the toddler to the bank, post office, a chaotic playdate, out to lunch and shopping for PJs. On the upside I'm tapering and still able to do all this, which is amazing. (Plus the toddler was super charming all day long and we had a great day together.) On the downside, I was so effing tired the fatigue actually started to hurt.

A nap gave me a second wind so I up dosed for a workout and ended up running a bit. The metabolic conditioning workouts I've been doing showed in that I could run much faster and further for my first run of the season than I normally can.

However, I ran the energy well dry and, by the end, I was doing a sad zombie shuffle, my eyes thick and heavy with fatigue.

So...still a work in progress.

Saturday, I took the toddler for a 4 hour excursion so hubby could work on some house stuff before a mentally ill relative returns for another prolonged visit (because no one else in the family can hack it, which I guess makes us the asylum? Yowza.That was so not on my list of life goals as a child.).

The toddler had soccer, then swimming then McDonald's playland. Four hours of non-stop toddlerdom. I could barely see straight on the drive home.

I tried to take a nap, but friends dropped by. Followed by more friends. And assorted children. So we ordered pizza for them to eat and I prayed I made sense when talking and smiled big (Of course I had just eaten a chocolate almond flour muffin and had big black specks of it in my teeth, but oh well).

So that's life on 10mg. Lots of fatigue, but no muscle pain, no flank pain and no muscle cramps (so far). If I tolerate it, I'll camp here for a while. No further plans to taper at the moment.

Saturday, April 2, 2011

In the Teeth

The taper is good. I'm tired but otherwise fine. I'm going to try to updose my next big exercise day and see how that flies my freak flag.

In other news, I have 5 cavities.

And the dentist doesn't believe I floss.

To which I say, if I'm lying about flossing, why then does the toddler filch used dental floss from the garbage because she is so freaking obsessed with the stuff?

Why does she get angry if the piece I give her (fresh, not from the garbage) isn't as long as mine?

Could it be because she sees me flossing my teeth all. the. damn. time? Huh? Could it?

Dental floss fetishes don't come out of nowhere you know.


Mean dentist. Baaaaaad dentist. Good thing they were just a sub.

The truth is, I have crappy teeth. I've only not had cavities twice in the last ten years*. Although usually it is just one cavity, but I have been avoiding the dentist until recently. So five it is.

The last time I had one filled, the nerve slyly eluded the Novacaine**.


*Which is why I will be sealing, or whatever you call it, the toddler's teeth as soon as humanly possible to spare her my bad teeth karma.

**Sometimes I wonder if I am the only person on earth who is incapable of receiving medical care without some kind of calamity occurring. Does this stuff happen to you too?