Rising Above

It may be premature yet to say this, but I feel like the taper to 20mg of Hydrocortisone (which is the equivalent of 4 mg of prednisone) is a success.

Here's what I did today; grocery store, pharmacy, craft store, made cookies, did a Valentine's craft and will be making dinner.

I've also maintained some semblance of an exercise routine throughout the taper, which is huge (although a good bit of that was me saying F*ck You to the fatigue, adrenal and muscle pain and exercising anyway).

Nor have I been sleeping much as the toddler has been up at night having problems breathing.

Those of you who have been reading a while can understand how good this is. To do all this and not crash is monumental. I am pleased.

On top of that, as of today I am condensing the pills, no more split dosing. We'll see how that goes over.

The eerie thing is that this taper has gone well just like the taper from 5mg to 4mg of prednisone. Odd that this would be consistent. 4 to 3mg of prednisone marked the beginning of the end last time, will it be the same this time around???

I won't find out for a couple of months. The plan is to just park at 20mg of HC until March. Of course I say that now, knowing full well I will start to get impatient sooner as opposed to later. But the smart thing would be to wait, here's hoping I'm as smart as I think I am.

With the HC's shorter half life and the fact that I'm now at a sub-physiologic dose, between the two, this will hopefully give my HPA axis ample time to recover fully.

On the toddler reading front, if anyone cares, I'm just reading the Usborne Phonics Books and asking her to read the words she knows/introducing her to new ones. This approach seems to be working well and the books also have whimsical plots that hold her interest.

Yikes

The toddler had her first acute asthma episode last night. Thank Gawd I have asthma and can draw on that experience to help her.

It wasn't a bad attack, there was no retraction and she was nice and pink. However, she couldn't get air out, was wheezing, and had a tight, hoarse cough. She was also panicking. Fighting me. Fighting the inhaler, then the nebulizer. She was terrified.

It seemed like we were headed for the ER.

I rocked her and sang the lullabies I've sung since she was newborn to get her to calm down enough to accept the inhaler.

Then I tucked her in and climbed into bed with her. Just as when she had RSV as an infant, I kept vigil, a finger under her ribs to monitor each breath.

At 4am, she needed the inhaler again and then this morning as well. Now she seems fine other than having a case of the boogies.

Ack. Major momma guilt. I hate asthma. I hate my genetics.

Also, the hubby has to get with it medically. He was arguing with me about it not being asthma. In exasperation, I threw my slippers at him just to get him to shut up as I was in the throes of trying to calm the toddler so she would take medicine and he was just going on and on, amping up the tension, which did not help.

I don't know how anyone can live with me and not pick up a few medical tid bits here and there, but the hubby has managed to avoid any medical knowledge whatsoever. That is going to have to change if the toddler's asthma continues to flare.

Down to 4 & Toddler Preoccupations

I am trying to go full time with 4 pills of hydrocortisone starting today. It's about as much fun as you would expect.

I like the comment on the previous post from Bad Turns talking about doctor visits as a one off.

I DO feel like my care is a series of bad one-night stands, where there's no history factored in at all to our encounters. No one remembers what came before or even what they said. Worse they contradict themselves, then deny they do so and then dismiss me because to acknowledge what I'm saying would be to admit they aren't paying attention.

It's a perverse dementia where every time they see me, it's the very first time.

I am the only one providing continuity of care.

That is so so wrong.

So the practice of modern medicine sucks. Anything else new?

Why yes. Glad you asked.

The toddler is after to me to teach her how to read. She's 3. She has the foundation to read (knows her letters and phonics and has been reading some words since the age of 2) but I have no idea how to teach her how to read. I just taught myself.

And she can be a bit of a perfectionist and tantrums when she can't do things exactly right. Meaning she's a prickly pear.

I'm a little lost here.

Of course, I'm delighted. I love nothing more than to read and to raise a fellow bibliophile is a dream come true. I just don't know what I'm doing. I've been waiting for this moment, when she would combine her knowledge of phonics with a driving need to read, I just thought she would figure it out on her own.

She also fell down the stairs again. Just a couple steps. No blood. But sheesh. Stop already.

The physical therapist is bumping her up to bi-weekly and we may go weekly for a while. My frustration is, if she's not in therapy (and we had missed some sessions due to the holidays and illness) she regresses. So I feel like we're doomed to forever be in therapy which is super expensive and not yielding permanent results.

The whole thing is so frustrating.

Sifting Through My Medical Records:AM Cortisol of 6.1

First a note on Roger Ebert & the Newlyweds:

If you recall the post I did on the young couple in Arizona struggling to feed and house themselves while fighting terminal brain cancer, Roger Ebert has picked up the cause.

Read about it on Head Nurse's blog.

The couple's blog is here and this is where you can make donations.

And then say a prayer for the hundreds if not thousands or hundreds of thousands of people who don't have the insurance of a cause celebre.

***

I finally got my medical records from the last several tests I've had. Which is good considering the pulmnologist did not return my calls when I inquired as to the results of the CT scan.

Call me crazy, but I think that loving feeling is gone. On both sides.

The right lung nodule has not grown (yay!) nor is it gone (boo!), BUT it seems I have twins as there is now one on the left side that was never mentioned before (to my knowledge). Final 'impression': Stable punctate pulmonary nodules.

I don't understand all the terminology and I'm confused as to whether or not I have a new nodule. Was it there before or not? The radiologist's report will go out to relatives at the major University hospital for interpretation.

My am cortisol on the day I saw the current endo AFTER taking 10mg of prednisone?

6.1.

That is LOW people.

Keep in mind, this was not long after the most serious, scary crash I had where recovery was very very slow. I guess my gut instinct that I hadn't taken enough steroids to address the problem could have been right.

ACTH was less than 5, which is also low, but I suspect not unheard of if your HPA axis is suppressed.

So I guess the ACTH challenge shows some recovery????? The baseline was 13 which is more than double from where I was with the first am cortisol of 6. However, 13 is the cut off for additional testing of the adrenals so it's not exactly a promise that I'm out of the woods, although I am hopeful.

Ironically, the lab flagged my final ACTH challenge reading as high at 20.6. How funny! Especially considering that medical school texts advise that anything less than a 22 should be further investigated with an Insulin Tolerance Test.

The thing that aggravates me is I feel like the endo should have disclosed the initial low cortisol to me since that was the whole point of seeing them. I also would have been much more confident in their interpretation of the ACTH challenge if it had been framed in the context of ' you were at 6 when I first saw you, now you're at 13, this is progress.'

Don't get me wrong, I'm still going to push for another challenge if I struggle at sub-physiologic doses, but better communication would have been appreciated as well as been helpful.

Again, this is a hard, painful slog. I need to know I'm suffering for a good reason. Also, improving the context makes me less of a pain in the a$$ as a patient so it's really a win-win for everyone.

Is it really so hard? Did the endo even look back to see the initial results when discussing the ACTH challenge with me?

Aside from all the adrenal stuff, the Erythrocyte Sedimentation Rate was high. From my scant reading, I gather this is a non specific marker for inflammation that can be useful in determining a diagnostic direction. I don't really have any feelings about this one way or the other, although perhaps I really should see a rheumy.

Lastly, all the anemia related blood values are looking better. A lot of them are normal now and the few that are lagging behind are just shy of normal. This is a happy improvement.

This Is Your Brain on Steroids

I am tapering down to 4 pills which is roughly 4mg equivalent of Prednisone or 20 mg of Hydrocortisone.

This is a sub-physiologic dose!!!

I am taking it slow. Trying alternate day between the new lower dose and the old higher dose. Hoping that is effective at gently easing my brain into the new dose.

Which I need because, yesterday? My brain did not work. At all.

Went to the mall with a friend and my brain decided that Floor 3 meant we had to go down to the basement level instead of up to the actual third floor.

I took me about 2 minutes to realize my mistake.

Why yes, I do drive a vehicle with that cognition. Defensive driving, it's not just because of the drunks people. Also, those people driving slow in one lane? Might just be trying not to kill anyone so stop honking.

Further, I hope to go back to work with this brain. I'm sure my work performance will be stellar! Right? RIGHT?

Embarrassed, I explained to my friend that I was tapering steroids and therefore was not in full possession of all my synapses. Fortunately, they have known me for a looong time and it was no big deal.

But gah.

My brain is a moron.

On the klutz front, I have lost all the skin on my toe (and I mean ALL of it) from the blister which is minor, but majorly annoying. As I had plans to like, you know, use my leg in the near future. The ankle, is ostensibly the worst injury but it's just bruising, not sprain or strain so it's functional. Nor does it rub like the toe, which aggravates the whole thing.

Health News

Googling Symptoms Helps Patients and Doctors. Medicine has to accept that patients Google and that doesn't make all patients cyberchondriacs either.

Oddly, I actually went on the quest for an answer prior to the internet's heyday. I had to take premed classes (earning straight As, thank you).

And walk 12 miles in the bitter cold with no shoes to do it. Old school, people. Hard a$$.

Here's the contrarian view of a whiny a$$ doctor: When the Patient is a Googler. Frankly, this guy can Suck It. My diagnostic accuracy has routinely been higher than that of medically trained personnel. So why would I think I don't know anything? Because experience proves me right time and time again and the doctors are always behind the eight ball.

Medicine is fallible. It fails patients miserably ALL THE TIME. Forget Google, what we need to be talking about if we want things to get better is how and why medicine fails patients.

Patients may be annoying (so are the doctors, FYI people in general are annoying) but they aren't anyone's enemy.

Gabrielle Giffords has great insurance and access to health care. What about the rest of the people in her home state? I did a cursory search to see if any media outlet has bothered to look at health care access, insurance and costs of the shooting as a socioeconomic exercise. This has not been part of the public discourse at all, which is unfortunate considering all the hoopla over health care reform.

Did everyone who got shot that day get care and access the same as Giffords? I would like to know.

The newlywed couple I blogged about earlier, they are from Arizona. Fighting to get health care while Giffords flies to Texas for state-of-the-art care simply because of who she is and how much money she makes.

It's pretty clear our care is rationed by class and that good, innocent people are suffering.

Listen up? You want good medical coverage? Get elected to Congress. Better yet, become President. Otherwise forget it because health care reform isn't even close to bridging the gap.

All but one of published studies on statins flawed. No good news on statins this week. The drug companies aren't looking at all for adverse side effects. Don't know, don't care. Looks like science is, rightfully so, calling Big Pharma on it.

Here's the original Cochrane Review abstract that blew the whistle. However, it's kind of devoid of meaningful data. The info I'm seeing in mainstream media is not reflected, which is annoying because the news bytes don't jive with the data from which they are derived. It's all 'statins are evil and useless' in the media and that's not really what the abstract says. Hopefully, a more authoritative article will come out and connect the dots.

Okay, so now for the most interesting news of this post: How I outsmarted my toddler.

She was recently determined to stay up all night.

In fact she was so riled up that we let her get up and hang out with us while we watched the last of Easy A (cute cute movie). The plot went waaaaaay over her head, but I just told her when she was in trouble to come talk to her momma. I hope she remembers that.

So the movie ended and I tucked her into bed (for the umpteenth time) around 11:30pm.

"Mommy, I'm going to stay up alllllllllll night."

"Oh. Great idea. Do you know how you do that?"

"How?"

"You lay really quiet and still in your bed. If you don't, you won't be able to stay up all night, okay?"

"Okay."

And that's what she did, right up until she fell asleep.

Don't mess with momma.

I almost started singing "Stay awake, don't go to sleep." Ha.

Clumsy Goes Viral

All of these are texts back and forth from hubby and I over the last few days. Well, I emailed. He texted.

***

ME: Subject: Oh My God.

The toddler is trying to kill herself.

In 15 minutes she

-tried to dive head first to the floor between the couch and the chair. Slammed her chest on the couch. I barely caught her before she smashed her head into the floor.

-fell getting out of the tub, scary fall

-tripped over my foot and fell AGAIN.

She's in tears.

HUBBY: I will get her a helmet.

***

ME: Subject: OMG

She just fell down the stairs big time. Drew blood!!!! Her face is all scraped up. :( Just when I was thinking we could quit PT!

HUBBY: What are you doing to my girl????

***

ME: Subject: How's work?

We are getting ready for ballet.

I am joining the boo-boo club. Tripped over the laundry basket. At first blush looks like a bruise of about 6" in length.

HUBBY: I kicked the vacuum last night.

ME: I just rammed the love seat into my big toe because I had to move it because the toddler threw my slippers back behind it. That one made me cry.

My ankle is swollen like 1/2 a baseball right now.

I walked laps while she was at dance class and did over a mile, giving myself blisters in the process. On both feet. I guess these boots were not made for walking.

***

So who wins? I'm pretty sure the hubby loses. Kicking the vacuum is nothing compared to what the toddler and I have done to ourselves. I think I win going by volume and time (I did myself in before noon), but the toddler wins with the sympathy vote. Also, her scraped nostril is pretty bad, she can't go to swimming class today as it's an open wound. She looks like we let her do UFC Cage Fights without a ref.

Our black lab, who is sweet as the day is long, now follows me around anxiously trying to lick my ankle. Hubby says it's because of the blood pooled under my skin. I say dogs can too have empathy.