Not Okay and I Don't Know Why

The toddler has an old camera and loves to take pictures. She poses her toys for elaborate portraits. There's a whole 'up the nostrils' series and our ceiling fan is her favorite subject.

We've had a few conversations about privacy. As in, don't take pictures of Mommy peeing on the toilet or coming out of the shower. Mostly, though she is intent on capturing the world as she sees it, which is awesome to watch. Every toddler should have a camera.

If I had my act together, I would have downloaded the photos and shared a few, leading up to the pic she snapped of me huddling on the couch. But I'm not together.

The post-vacation headache lasted a week. Despite NSAIDs, every afternoon I ended up head butting a pillow trying to ease the pain.

That has passed, but I just can't shake the fatigue. So now I'm on the couch because of the fatigue. Note that I am not a napper, something has to be going on for me to lay down.

It could be adrenal, I guess, but I am hesitant to take steroids as I can mostly push through to do what needs to be done, well, except for the daily nap part. There aren't too many other adrenal hallmarks. No weakness, or heaviness in limbs and the bp has been trending higher than usual, not lower than usual.

Your guess is as good as mine. All I know is I'm tired of feeling awful. I want to wake up ready to greet the day. I want a clear head, not this lingering fogginess that makes everything hard. Technically, there is nothing wrong with me so...

Maybe I'm allergic to vacations?

Riddle Me This

So I actually weighed myself after the vacation binge.

Didn't gain an ounce.

I just assumed I had due to all the bloatage, but nope.

Zippo.

Ate pie every day.

Double decker ice cream cones.

Cookies.

Bread, specifically to-die-for grilled cheese with brie, bacon and tomato jam.

I made sure to eat only when I was hungry even if it meant skipping meals. I also walked daily. At least a mile, sometimes two. And I took the equivalent of a cold bath everyday in the Lake, which was cold enough to make limbs approach numbness (which I'm guessing revved up the metabolism a bit).

Here's what I don't understand. I can cut carbs to the bone. Exercise intensely and don't lose weight.

Yet, I can maintain weight in the face of a week long sugar coma despite supposed severe insulin resistance.

It just doesn't compute.

Coincidentally, my last bout of weight loss stopped when I discontinued the ice therapy as described in The Four Hour Body. Do I just need to take a cold bath every day? (I don't think I can hack it though.)

Or, alternate theory, did I have a touch of the adrenals? The cramps in the small muscles of my feet and hands are classic adrenal insufficiency symptoms for me. Along with the flank pain. But that has passed.

I'm back to low carbing and interval running (which is going amazing because of the pylometrics I've been doing. FYI if you want to run, do squat jumps first, then run, it'll give you a head start).

Now the scale is being a bitch even though I'm doing all the right things.

So should I be eating pizza, fries and ice cream now?

Why is my metabolism such a strange brand of screwed up? Why can't I just do Weight Watchers like everyone else?

Exercise Blah Blah Blah

Asthma is good. Knee is doing okay. Gallbladder is mostly behaving. Working on losing the weight from vacation. Mostly water from carb bloat.

What's killing me now is the sugar detox. Blazing headaches and fatigue for the last three days as my body realizes the week long cherry pie eating contest is over.

Ran, walked, galloped with our idiot yellow lab tonight, which I hope has helped clear some of the haze. Aerobically, I'm doing pretty good since I can run and continuously yell at the dog so he doesn't trip me.

Also, I gallop sooooo much faster than I run, the push-off from the glutes really adds to the distance I can cover. Note to self: When evading serial killers and/or rabid dogs*, gallop, don't run.

*I was attacked by a dog when I was 8 months pregnant, so this has happened. Fortunately, I was meaner than the dog.

I picked a preschool and went with the better schedule, one that allows lots of exercise. The new Zumba class I found (and like) is run by the local inflatables place. For $5 they'll provide childcare, allowing the toddler to jump and run to her heart's content. This is a pretty handy thing for the winter months. Especially when you're told to keep your kid active as an adjunct to physical therapy. So twice a week, I exercise, she exercises and then goes to preschool while I work.

Plus she can sleep as long as she wants in the morning. Last year, she really wasn't ready to get up at 8am and it was tough for her to adjust.

Let's just hope this year goes better for her socially than last year. The Early Intervention people will be working with her preschool, so hopefully their input and supervision will keep things on track

Back in the Saddle

We are home.

I am pooped.

Hubby ended up in Urgent Care with swimmer's ear that has been remarkably resistant to treatment thus far.

Since he refuses to establish with a PCP, that means another Urgent Care visit probably tomorrow.

(No, that's not how I would do it, but the hubby is his own man.)

The asthma was good, except for when an improperly doused campfire smoldered through our window all night. I couldn't figure out why I was up hacking like a smoker and using the rescue inhaler, until we saw the smoke the next morning (and then I smelled it, but not before). Once the fire was truly out, everything settled down.

I used to be able to handle fires, but, a few years ago, my lungs made it clear those days were over. When the family gathers around the campfire, I sit inside with all the windows shut.

Today I am having some post-vacation adrenality. Burning flank pain and muscle cramps, particularly in the small muscles of my feet. The plan is to out-sleep it.

Meanwhile, I've been sending this important article to everyone I know:

Profit from Ecological Mayhem

“Energy “will give us serious and sustained problems” over the next 50 years as we make the transition from hydrocarbons — oil, coal, gas — to solar, wind, nuclear and other sources, but we’ll muddle through to a solution to Peak Oil and related challenges. Peak Everything Else will prove more intractable for humanity. Metals, for instance, “are entropy at work . . . from wonderful metal ores to scattered waste,” and scarcity and higher prices “will slowly increase forever,” but if we scrimp and recycle, we can make do for another century before tight constraint kicks in.

Agriculture is more worrisome. Local water shortages will cause “persistent irritation” — wars, famines. Of the three essential macro nutrient fertilizers, nitrogen is relatively plentiful and recoverable, but we’re running out of potassium and phosphorus, finite mined resources that are “necessary for all life.”

We are living this now. It's not some distant future, it's here today.

There is no economic recovery against this backdrop, only more poverty for more people…unless there are major innovations on multiple fronts...which I’m not holding my breath.

The Vacation Post that Barely Mentions my Health

I love the Great White North that is Northern Michi-gan. The beaches are so gorgeous, even the butterflies come by to sunbathe. Everyone should vacation in the Trav-erse City area once in their lives. It should be on everyone's bucket list.

The first day, we body surfed in 5-8 foot waves. I was ankle deep in the Lake and one wave hit me at the waist only to be followed by another that got me in the boobs. Crazy! The water was so rough, it seemed like even the ocean had stopped by for a visit to the UP.

The toddler (in a life jacket, with Daddy as lifeguard) and I screamed like we were on roller coasters. The water was polar bear cold and the day was cool, but the waves were so. much. fun. no one cared they were freezing.

Yesterday, we returned to the same beach and found the lake whimpering meekly on the shore. Booooring. Instead of jumping carnival-ride waves, we got sunburned. Humph.


Today, the family, including the hubby, is on a fishing trip, leaving me with toddler duty. Given that the hubby hates fishing, and my extended family is more cantankerous than usual, I have the better end of the bargain. He's on a boat right now silently chanting 'at least the fish will be delicious' and 'I will not chuck anyone off the boat.'

So I slept in until 9, let the toddler watch cartoon after cartoon on networks she's never seen and threw in a load of laundry. Now I'm waiting for the washer to finish so we can go to the farmer's market and a rumored art activity (everyone has told me about it, but I have yet to see the fliers they've seen).

The really big news? The toddler wrote her name for the first time and then typed several words on the computer as well as maneuvered the mouse, also for the first time. She just blossomed, right in front of us.

You know it's a developmental spurt when they are so focused on a new skill, you can't even capture their attention with the promise of ice cream. We waited until fatigue made her less accurate with the mouse, and then pried her fingers off the keyboard and took her to the ice cream stand where we stuffed her with caramel ice cream.

The asthma snapped back into formation the second I started a new Symbicort inhaler. There is something wrong with those dang inhalers. I keep having this issue.


(Note: Click to enlarge the pic above to see the butterfly. My camera is good, but not good enough to get great detail on such a small thing.)

So I'm having a good time and can finally breathe. Winning!

Pre Vacation Wheeze

1. I have been struggling with adrenality, but hope a day of no exercise and a good night's sleep will put me right as rain.

Why the struggle?

The stress of trying to get things done professionally and for our upcoming vacation has been immense. Which does not help. I'm just not as resilient as I used to be.

And...

2. The asthma is spinning out of control for no good reason. I have been suspicious of the current Symbicort inhaler since there were 30 doses left.

When the inhaler seems wonky with just 5-10 doses left, I can abandon it and start a new one. With 30 doses, that's not feasible. So I've had signs of mild steroid withdrawal and been making do with the rescue inhaler.

Today I started wheezing.

This has been a consistent problem with Symbicort and I haven't had much luck getting anyone's attention.

Since the advent of inhalers like Advair and Symbicort, asthma is a non-issue unless there's a bug bad enough to outpace the medication. Wheezing without an underlying infection? Is just unheard of for me now.

Or it could be the fatigue triggering the asthma. That can happen, although, very rare since Advair/Symbicort entered my lungs.

When I was a teen? Shopping at the mall would make me wheeze. I used to have to sit and rest. I never had the stamina to stay long. Once I was tired, I wheezed.

So maybe the fatigue is getting to me? But then where was the wheezing all those other times?

Anyway, I'm trying a spacer with the Symbicort. With Advair you didn't need one and I haven't been using it, but maybe there's something wrong with the Symbicort delivery mechanism or my timing (although I've always had good 'inhaler form'--total Olympic team quality there).

If the spacer doesn't help, I'm almost ready to start a new inhaler and I have Pulmicort as a back-up. Up until the wheezing started, I was just always tight and unable to 'pinch an inch' on my chest along with painful breathing. I had hoped it would clear up on its own, with just a boost from the albuterol, but it's not.

In My Dreams

My health often intrudes in my dreams. Most notably, for decades now, nocturnal asthma will trigger dreams of suffocation, strangulation and drowning.

Last week, when the asthma was not well controlled? I didn't worry too much because, although I woke up tight and unable to 'pinch an inch', I didn't have any dreams. Which told me I was breathing okay.

I just took the albuterol inhaler every morning and before exercise until I stopped waking up so tight. Easy.

A few years ago there were the nightmares of heart attacks due to a benign sinus arrhythmia jacked up on caffeine and new baby sleep deprivation. Those dreams scared the bejeezus out of me since they featured angry ER staff screaming I was going to die.

I would wake up from those dreams and have to talk myself out of calling 911. They were that frightening. My heart jerking around like an over-enthusiastic puppy on a short leash didn't help.

Now the gallbladder is getting in on the action. The first night, it simply woke me up by rattling my ribcage. I rolled over to take the pressure off and that was it.

Then last night. Whoa. There were dreams of appendicitis and an abdominal aortic dissection surgery. On an UFO, no less. When I woke up, the pseudo appendicitis pain was there, explaining the dream. Although I'm still confused on the UFO bit.

In a recent issue of Oprah magazine focusing on intuition, there was a profile of a woman who discovered her colon cancer because of her dreams. She had intensely disturbing dreams for weeks, and kept going to her doctor, saying something was wrong. The doctor blew her off, citing impeccable physical results. So, the next time, she had the dream, she begged it for more information.

"Go deeper," the dream told her.

When she woke up, she asked her doc where the deepest part of the body was.

"Your colon."

And that's how she had a colonoscopy and discovered a pretty serious colon cancer that would have killed her without the impetus of her dreams.

My dreams are not that exciting (thankfully), but the story illustrates their power. The connection of our health to our subconscious.

However, me personally? I would not complain if my body left me alone in my dreams. It would be nice to have a safe haven.

This? Is My Body on Asthma.

The issue I'm grappling with these days is the hamster wheel of deconditioning followed by conditioning as a result of being sick. Throw in the impact of steroids on my muscles, mix in some aging, and wow does it suck to try and put myself back together over and over again.

Every time the asthma benches me, I have to slog through hell to get back to where I was. It hurts. A lot. Which is why I complained so much about having to stop exercising during the last bit of steroid taper.

Here's how exercise has been going for the last 2ish months.

1.My bicep has been messed up for a month. I'm not sure what I even did other than try to exercise.

2.My neck is a mess, with trigger points flaring around each scapula and up and down either side of my spine. Why? I added swimming to my workout routine and the lack of fitness left me ripe for reactivation of old neck injuries. (I never had trigger points until steroids,which...not awesome.)

I have since stopped swimming. Once I get to a certain point in rebuilding my upper body strength, this will all abate, but it involves months of pain, lots of massage (bless the hubby) and liberal use of the theracane. Oh, and huge quantities of NSAIDs.

3.Both the hubby and I have 'knees of a certain age.' Thanks to that no-good-reason-for-it fall in the pool in June, I can no longer out-exercise whatever is wrong with mine. I have stopped biking as that really aggravates it and hope that wishing the knee well is a viable treatment.

I wish I may, I wish I might, have a fully functional knee feeling alright.

4.Then, last week, I broke my stomach doing an inner thigh exercise. It didn't look that dangerous, but I'm five days out and I still can't sit up or touch my stomach without pain. This is WTF? bemusing.

Who sprains their stomach? I do!

Who kills herself exercising and doesn't lose a pound? I do!

*Throws up hands and gives up.*

This? Is my body on a lifetime of asthma and the steroids used to treat it.

P.S. I hiked 3.5 miles and ran 400 stairs anyway. I like stairs. The hike got a bit old that last mile. At least the deer were amusing. Suburban deer are 'How you doin'? S'up?Mind if I nibble that leaf by your elbow?' whereas national park deer freak out and have panic attacks. If they could talk, they would be screaming like a girl in a slasher movie.

This, Also, Is Not Okay

A friend was in a serious car accident. Her friend, mother of three, was killed. The day after her birthday.

Another car ran the light and that driver had a DUI just a few months ago.

So another suspected DUI.

Very sad. My friend, who has young children, faces a three month recovery and rehab. I don't know if she will be well enough to attend the funeral.

Alcoholism is prevalent. It is the single most common reason for couples to seek pastoral therapy (per the ministers in my family). You would think with so many people dealing with alcoholic fallout that we would do better as a society.

But we don't.

This is now the third time a drunk has hit a friend. I've lost count of the people I've known who've had DUIs.

It seems like rehab is only effective for the victims.

My Shot at Prevention

Saw the pulmo. Ever so slowly I think things are gelling the way I had hoped.

No more denial of adrenal issues and some actual discussion of how to handle this in the future (aka they got a letter from the endo).

Even seriously considering my oft proposed idea of adding nebulizer steroids* to the mix (aka building a better nebulizer treatment).

This is major progress.

So so so glad I don't have to find a new pulmo. For the first time, I am hopeful we can work through this.

The trick is going to be keeping this momentum going for 4-7 years until the next big asthma blow up. The double-edged sword of my brand of asthma is that, while I am stable for long periods, this is long enough for everyone to forget how bad my lungs and HPA axis can be.

Even I am lulled into complacency.

But, for once, I think I have a shot at preventing HPA axis suppression. A year too late and it was way harder than it should have been, but I'll take it and be glad I have it.


*Yes, yes, I know the studies say the inhaler is just as good etc... blah blah blah, but I have always responded better to the nebulizer for whatever reason. Inhalers are fine for mild asthma, but go-to-the-ER level asthma requires the extra je ne sais quoi of a nebulizer.

A Note on Decorum

Hi. Just an FYI, I'm not an asshole. No really.

I'm not your punching bag either.

Unless I have directly insulted you personally, there is no reason for that kind of ire.

None.

I don't deserve it.

It's not okay.

Further, you are proving my point.

I thought this blog might be of some service for both patients and the medical community.

I admit, the name has been an unfortunate albatross. From blog platforms that won't let me post comments as their filters consider 'pissed' to be a swear word (I don't think of it that way, to me it is just a synonym for angry) to bloggers not being sure of how 'safe' I am because who goes around labeling themselves as a 'pissed off patient'?

Well, I do and I'm not a troll deserving of a smack down either. Despite what you think the name might imply.

The patients get it, but the online medical community has been largely silent, occasionally confrontational, and rarely supportive.

Again, proving my point.

Take note, I don't bite, unless you do.

Lots and Lots

Okay, busy busy here. Ready?

Take a deep breath. Here we go.

1. Visited 2 preschools. One is the perfect fit (I think) with a gentle director whose done the PT/OT hamster wheel with their kid due to muscle issues. The other is the perfect schedule, fit unknown, but slightly better facility and a good Pre-K program for next year. Gah. How to choose? I hate this part.

2. Did my favorite work out. Ran 400 stairs and walked something more than a mile. Calves were sore for 2 days. I will try for 600 stairs next time. Trying to figure out when to stop? At 1000?

3.Also did some interval running/walking/skipping/hopping. No soreness after that.

4.Had an adrenal moment after that stressful Friday. It wasn't bad, but I was foggy for the whole next day and just run down. Didn't 'wake up' until the day after.

5. Aviva suggested I look at endometriosis (sp?), but I would not think I fit the profile. No painful periods. BUT I did have that laproscopic (sp?) surgery for appendicitis that wasn't appendicitis and I wonder if there's scar tissue from that. There is a palpable difference in tissue quality RUQ vs. LUQ and even appearance. The RUQ is bigger. I have wondered if it's scar tissue.

6.Forgot to ask the gastro on how to handle breakthrough symptoms at night as well as the possibility that it's the GERD meds that are the problem. Also, forgot to ask for refills. Doh! That's how stressed I was that day, stressed into disorganization. Also I ran 6 flights of stairs to make it to the appointment and was still out of breath when they called me back. Really frazzled that day.

7. I seem to have now lost 3 pant sizes, depending on cut and fit. This is the exact same size that no one has in stock. Which is bad because the pants I have on now? Kept on by prayer alone.

One more size 'til goal.

On top, I've dropped one size and I can't quantify beyond that. The goal is just to be something smaller than the current size.

When I was bikini skinny? I wore anything from an 8 to a 16, depending on cut (the curse of being tall with broad shoulders). At goal, the top size will probably waffle between the next two sizes down at. My ass, I can get into one size, the rest not so much.

8. The salad ebook in the right side bar? Hit #4 on Amazon's Kindle top sellers list. Note this is not a competitive category. I think someone could return the book and I'd probably shoot to #1. Still, kind of nice.

Also, one of my slow cooker recipes was selected for a recipe newsletter. No pay, but publicity.

I'm still waiting to hear from the editor on the novella. They are a few days past the deadline they gave me which grrrrr.

9.The asthma no likey the humidity. I've had to use the rescue inhaler. Sigh.

You Don't Want to Be Sick

On one of the low carb message boards I frequent, there is a person who maybe needs to be evaluated for Cushing's. Maybe.

I do think Cushing's is more frequent than we realize. There was a study that found many diabetics also had Cushing's. There's also a number of PCOS patients who actually have Cushing's. Not that they will ever be evaluated for it. Because it's so rare, you see. So why ever test for it, right?

Just to make it more fun, in case you didn't know, the care for Cushing's is poor, usually requires travel, is expensive and it's all on the patient to make medicine work for them. Which is like pulling teeth and very stressful.

A Cushing's diagnosis is not a magic bullet.

I gave my advice to the person and warned them to keep their expectations low of endocrinologists. Not only do endos routinely see thyroid and diabetic patients (seemingly) to the exclusion of all else, I suspect they also get a decent number of patients who think their weight issues are hormonal.

Which they are, technically, but, practically, medicine has little to offer.

Hormonal anything is a crappy diagnosis. We can't even get consensus on thyroid testing and care, which is a common problem! The care just gets worse from there.

So they came back and wrote something to the effect 'is it wrong that I want my weight problem to be Cushing's?'

*bangs head against wall*

After the hell I've been through? Yeah, it's wrong. There is nothing easy about a hormonal problem.

What should they want? What I want! Which is an easy diagnosis that tests well (plus doctors willing to do the tests) with an established and effective solution.

Given my experience thus far as a patient, I think that kind of diagnosis is a pipe dream.

What was the last slam dunk diagnosis you had? I think mine was pregnancy.