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.

Various Addendums

1. On the genetics of friendship link I posted, I did want to add the thought that maybe drinkers hang out with drinkers because, I don't know, they all go to bars? And non drinkers don't go to bars and thus meet each other that way.

I am a non drinker. Never been drunk in my life. Just don't have the palate for booze. So all my friends are dry.

Is it genetics or circumstance? Hmmmm. Not sure if the study controlled for any of that.

2.The knife handle that broke was my grandmother's. I have an almost animistic ancestor worship thing going on with my grandmothers. Both passed. Both lovely women who (whom?) I miss deeply.

So all I have are their things and the memories. When the things turn to dust, almost literally, in my hand, it's a bit of a bummer.

3.The egg really was full of blood. Never saw that before. I'm sure it portends nothing pleasant. If you can think of a positive spin, please share.

4.The hubby comes home today. YAY! I did a decent job as a single parent despite having the laziest adrenal glands on earth.

We did crafts.

I took her:

• Swimming
• To the birthday party from hell
• To preschool
• To McDonald's playland
• To her gym class
• To ballet class
• To the library
• AND organized two play dates

There was also a lot of takeout food as something had to give. Plus napping or lolling on the couch while the toddler did God knows what. I am exhausted and plan to spend an entire day sleeping in the near future. Seriously. The entire day.

Also, the hubby won a $50 Visa gift card while in Vegas, but not gambling, as part of the business thingy he was attending. It's mine. All mine. Mine mine mine. To spend on myself as I wish.

Meaning I'll buy clothes for the toddler. Who grew again. Already?

Windfalls, please meet the infinitely expanding black hole of child rearing costs.

5.I pulled my hamstring. From a combination of steroid induced muscle spasms and running with the toddler prior to her gym class (always always encouraging exercise as an adjunct to her physical therapy). Running is maybe too strong a word as I am not in such hot shape despite exercising (feebly) every 2 to 3 days. As evidence: The toddler can outrun me.

But the more-rapid-than-walking I did was not a hit with the hammy.

Suckage.

But I checked out a Brazilian Carnival workout DVD from the library anyway. Hope springs eternal.

So does, apparently, asthma.

6.With the hubby coming home, I am facing the fact that I slept so much better without his snoring and beeping. Sigh. I could sleep somewhere else BUT I am the only one who hears the toddler at night. Not only is the hubby noisy, he sleeps like a drunk bear in the deep of winter. Hence the reason why I still do 99.8% of the night time parenting.

Maybe I can ask him to relocate to another bed every so often. It's not always so horrible, but I do think that it's not just the steroid insomnia that has me using children's Benadryl so often as a sleep aid; it helps me sleep through the noise too.

EDITED TO ADD: The toddler peed the bed last night. Hubby snored. I swear these people are half my fatigue problem.

What Little I Had

I gave to this young newlywed watching her husband die from a rare brain cancer. Not how anyone pictures the first year of marriage.

Major media coverage on this story here.

I married at 22. He was an illegal alien and I hadn't finished college yet, my family was aghast. As was his, primarily because I was American. We've lived to prove them wrong, this couple will never have that chance.

So, I don't really have any money, but there's always a few bucks laying around not doing anything special. Because I'm always afraid to spend them because there's never enough stupid money. This seemed like the right way to dispose of them.

If you are so inclined to do the same, I know they would be grateful.

No one should have to die wondering how they will pay for food and shelter let alone basic medical care.

Stupid money. F*ck cancer.

Health News

Weight loss pollutes your blood. I would also say that weight loss triggers autoimmune issues although I can't say if that is independent of or because of the pollutants. I don't think it's a coincidence that I rapidly lost 20lbs, got sick and ended up in the hospital last year. In my body, weight loss is not benign and I notice that I am actually sicker when losing weight than when overweight.

Still waiting for science to catch up to this observation.

1/2 of the people in the US have pre-existing conditions. It's not death panels I am worried about, it's the chronic disease panels trying to economize management of conditions like asthma that worry me.

Genes influence friendships. Fascinating stuff. The science says alcoholics flock with other alcoholics as part of their DNA. Also, by the way, most of us are related by virtue of the fact that Charlemagne was quite prolific in the bedroom. This was explored in a Smithsonian article years ago. All it takes is some guy powerful enough to 'sow his seed' wherever and whenever he wants to genetically link millions of people.

Low carb is gaining ground. An excerpt says it all:

"Fat is not the problem," says Dr. Walter Willett, chairman of the department of nutrition at the Harvard School of Public Health. "If Americans could eliminate sugary beverages, potatoes, white bread, pasta, white rice and sugary snacks, we would wipe out almost all the problems we have with weight and diabetes and other metabolic diseases."

It's a confusing message. For years we've been fed the line that eating fat would make us fat and lead to chronic illnesses. "Dietary fat used to be public enemy No. 1," says Dr. Edward Saltzman, associate professor of nutrition and medicine at Tufts University. "Now a growing and convincing body of science is pointing the finger at carbs, especially those containing refined flour and sugar."

Americans, on average, eat 250 to 300 grams of carbs a day, accounting for about 55% of their caloric intake. The most conservative recommendations say they should eat half that amount. Consumption of carbohydrates has increased over the years with the help of a 30-year-old, government-mandated message to cut fat.

And the nation's levels of obesity, Type 2 diabetes and heart disease have risen. "The country's big low-fat message backfired," says Dr. Frank Hu, professor of nutrition and epidemiology at the Harvard School of Public Health. "The overemphasis on reducing fat caused the consumption of carbohydrates and sugar in our diets to soar. That shift may be linked to the biggest health problems in America today."

Dragged Down

A knife broke in my hand.

The handle disintegrated.

My favorite spatula cracked and shattered.

I cracked an egg and it was full of blood.

Not my day today.

I already knew that though from the bone weary fatigue.

The barking cough.

The constant squeeze of asthma.

The hoarse voice from fatigue now turned to laryngitis.

Today I am feeling the drag.

Irrelevant Holy Molies

First a funny story that is a complete non sequitur.

Over the holiday my toddler brought a DVD to grandma and said "This is my favorite vdv."

So grandma put in the DVD and fiddled and fiddled trying to get it work, because she was born before there was TV let alone a remote let alone VHS or TIVO or DVDs or Netflix.

And thus the movie 'The Book of Eli' began to play.

For those of you not already gasping in horror, 'The Book of Eli' is a post-apocalyptic film that features heavy adult themes such as guns, and violence. I believe there is even rape, but we never actually finished the film because we found it dull.

Luckily, I walked in before the movie got too far.

The thing that slays me is grandma never once thought maybe 'The Book of Eli' wasn't looking so much like a kid show.

/non sequitur

Saw the derm today. Aside from the awkward nudity (really, you have to pry apart my a$$ cheeks? For all the med bloggers complaining about the nudie bits, has it ever occurred to you that you are doing it to yourself? I am certainly not bending over and spreading wide, in fact I left on my underwear as a kind of, you know, HINT.) it was fine.

No biopsies scheduled. All 300 plus of my moles look abnormally normal.

Which would be awesome except that I'm still on a 6 month schedule of awkward nudity which, boo hiss.

Parenting With Chronic Illness: Skip the Birthday Parties

Single parenting week has been kicked off with a bang followed by copious whimpering on my part.

First up, the toddler's first swimming lesson. Which she managed well.

The weather, though, was another story. It's whatever you call colder than frigid. The wind kicked up tornadoes of ice crystals that invaded my lungs and drummed in my ear.

Just the other day I was telling someone, asthma is like drag on a car. Sure, you can probably get a Porsche up to 90 even with a parachute snagging wind behind it, but not without making the engine work a whole lot harder. I may outwardly appear to be 100% a-okay, but it takes more out of me to do regular stuff compared to normally lunged people.

And I feel it.

Especially when the winter wind pythons through my lungs.

Or when I walk into a birthday party for a 4 year old and see they have cats.

Because I didn't think to ask.

At least they weren't smokers. Thank Gawd.

This was my first birthday party with the toddler. The very first one, I worked so hubby handled it. The second, the older neighbor girls took her and left us alone for a blissful 3 hours--see also heaven for parents.

This party was quite the rude awakening.

One, I need to remember to ASK about the environment I've been invited to. I am still not used to how vigilant I need to be now. I'm working on 'old asthma time', when it really didn't matter and any fallout was minor.

Two, children's birthday parties are horrible evil things that are best avoided. The toddler was run over by the older kids (all boys who seemed to all have ADHD or a serious Red Bull habit) and the younger kids were all refusing to share. There was crying. Squabbling. Boo-boos. Two hours in, they still hadn't served the cake* and the toddler was not coping well with the all around lack of sharing (day two of no nap did not help).

As a parent, I was stuck in the delicate position of not parenting other people's kids but also trying to ensure no one's kids killed mine.

I pulled the plug and left. Too Lord of the Flies for us.

By the time we walked out, I felt like I'd been worked over by Mike Tyson and a familiar ache started to throb in my mid back until my limbs turned to lead. Way too much stress.

From here on out, Daddy has to do this birthday crap. I can't hack it. Maybe someday if I ever kick my steroid habit, but now? It's just asking for trouble.


*For those of you without kids, this is excessively long for a birthday party. My goal is always to have the entire thing done in 2 hours; food, cake, games, gifts. If people want to stay past that, fine, but they aren't held hostage because the cake hasn't been served yet.

Maybe the Problem Is the People I'm Sleeping With & Lisinopril is Loopy

PART I: I Need to Sleep with Someone Else

Pride goes before a fall.

The toddler unleashed Niagara in her bed at 2am last night. I am so sorry I said anything. Really.

The hubby's snoring kept me up. I asked him to roll over, but after a while there was no place left to roll.

Then his phone blipped notification of an incoming email at 3 am. (I would like to know who that was so I can send a fax to their home number at the same time.)

He sleeps with his phone.

Because he uses it as his alarm and in case there's an emergency at work.

I hate his phone. Like sleeping with a noisemaker.

The toddler is afraid of the dark and sometimes likes to wail about it in the wee hours of the morning. Think Muslim call to prayer with a side of sobbing.

We slept with the lights on from 4am forward.

My gut decided to be a problem making it difficult to find a comfortable sleeping position.

Muscle cramps woke me up when I did finally get to sleep (don't listen to me when I say the muscle cramps are better).

When the toddler pitter-pattered to our bed this morning, I tried to convince her it wasn't morning yet.

Because I thought it wasn't morning.

Little did I know it was 7:30am.

I wonder how much of an improvement it would be to my health if I moved out, got my own place and slept BY MYSELF?!

PART II: Lisinopril is Loopy

So I forgot to take the Lisinopril this morning and the second I did? BAM! Smacked in the head with foggy dizziness.

Wow.

Lisinopril Side Effects: Like a roller coaster but without the $40 entrance fee.

So that explains that.

Although not the times I feel that way and am not on BP meds (i.e. the almost syncope of the tilt table test, see also the time period between March and Christmas).

I wonder if it will pass? It seems sometimes Lisinopril side effects fade but there's no specific statement of 'dizziness stops after X time' anywhere.

I had been at 10mg. Now I've halved it to 5mg and it's still like getting whiplash from a manic Tilt-A-Whirl.

Strangely, this didn't happen last time. Why can't it ever just be simple?

Time to call the primary care doc I think.

In Need of the Force

Exercised yesterday. Went well at the time, but pooped me out today. The muscle pain is gone but the cramps are a problem with exercise and on a hair trigger---there is no stretching, none, no sudden movements or reaching either, got it?

I recall this from the last time (the time all the doctors agreed I was suppressed). I couldn't lift weights and did very rote exercise like treadmills and the elliptical--regular walking hurt too much.

This lasted a couple years.

Just one little asthma attack....

Sometimes I think I'm the poster girl for someone who really should never ever take prednisone.

But I exercised and it didn't hurt too much.

Didn't feel like much of a victory either.

Lots of non medical stuff going on. Hubby is leaving me for a week for a business trip. I hope this time single parenting won't be as difficult as it has been the other times. I'm not sick (well, not anymore than usual) and the toddler has been out of diapers at night since before she turned 3 so there's a dearth of bed wetting (thank goodness and no, we had nothing to do with it, it was all the toddler).

However, the hubby is sick and the timing would be I catch it right around now, ugh. I'm trying (and failing) to get some soup and almond muffins made so if the worst happens, there's food at the ready.

Also I did cave and re-start Singulair. The asthma improved and then got worse and all I can say is it's been a cold lung lashing winter. I'm not sure what the deal is, this is unusual for my lungs. I still have a productive cough so perhaps the virus I barely had is still active. The hubby coughed for about 6 weeks.

Some of the stuff that hit the fan before Christmas is being very difficult to resolve. I'm having a hard time finding the experts I need to deal with things which is very very bad.

When it rains, it pours and I never carry an umbrella.

On the silver lining side, the nice thing about Lemony Snicket serious problems is that you appreciate the good stuff. In fact, diving into it and living in the moment is the only thing that keeps you sane. Like snuggling with my girl and playing 'baby' and answering questions like 'do dogs talk, momma?' and having a rare lunch out with hubby/Daddy.

I'm living in the moment a lot these days. I suppose that is not such a bad thing.

Normal

Heeeeey.

Guess what?

When I finally ate something other than a handful of peanuts and some lettuce (under the guise that I wasn't hungry) yesterday, I felt a little less 'altered mental status'.

Wow.

Eat food. Feel good.

Who knew?

So the tilt test?

Normal.

Like I originally thought.

Although it had me going for a moment.

Digging deep deep deeeeeeeeeeeep in that dark rabbit hole.

Shrug.

F*ck if I know.

I did say, again, if the wean down to subphysiologic doses of steroids didn't go well that I want another challenge.

They didn't say no.

Or yes.

Or maybe.

In fact, they did not respond at all.

But they didn't say no.

Progress????

Stranded

Note that I am all a-googly-eyed right now. Not sure why, but it's like I don't live in the real world. No, I'm in an alternate reality where cognition synapses as the speed of dead snails.

It's easier to make sense when writing, but I spin circles in conversation. On the off chance, I'm not as together as I think, please excuse any mental lapses. I don't feel like I'm at full mental capacity here.

Yesterday a 20 minute nap turned the world right side up....until I had a minor asthma attack which put me back to feeling-like-roadkill status. Hopefully I can catch a cat nap later.

Anyway, now that I've explained I'm out of mind, we have about 500 feet of snow with a school superintendent who is, I guess, party Husky and school was not canceled.

Me being me, thought, 'well, if the Super hasn't canceled school it must be fiiiiiiiine."

I am a moron.

Who can't drive in snow.

I toughed it out and got the toddler to p-school only to realize there was no point in going back home because I would just have to turn around and come back.

We live 3 miles from pschool. It took 40 minutes to get there today.

Mostly because rush hour was so backed up that the volume on the side roads was bumper-to-bumper insane, complete with random u-turns of people giving up and going home.

So I decided to stay at preschool. Only I hadn't eaten yet and I hadn't brought my purse which has an emergency stash of meds and food. My split dose is supposed to be taken around 10:30. Preschool ends at 11.

Please smack me. Repeatedly.

Again, I am a moron.

Moron. Moron. Moron.

Walking in 8" of snow to a gas station to buy a breakfast of honey roasted peanuts because to drive would take 20 minutes? Not a lot of fun.

Other parents stayed too. One was a nurse (I found out later) and I was feeling so high, I warned them I was a bit light headed as I was worried I wasn't making any sense.

"Is your blood sugar low?"

"Maybe," I said pulling out some M&M I'd bought at the gas station.

"Are you diabetic?"

Answering no I explained, briefly, about my medical f*ckuppery.

And got yet another doctor recommendation back.

Which I shrugged off. How many times have I been told now that so and so is a great doctor? Too many times to count.

The truth remains that unless you exhibit signs and symptoms and test results that are within the realm of a doctor's direct experience, you are screwed. Doctors only seem to be as good as what they know. There is a disheartening inability to extrapolate from their education and it seems they all skipped the chapter as well as the lecture and maybe even the test on adrenal glands.

The thing about me is I am an extrapolator. Not necessarily with medical stuff, but I can take something and abstract it to someplace else intellectually and that process is relatively uniform regardless of the topic. It is incredibly frustrating to me that I continually see physicians who can't stretch their thinking and yet subscribe to this idea that they know everything.

There's more than one kind of stranded.

Liosinopril Loose Ends

Pursuant to this post and this post regarding my blood pressure, let's make some knots out some loose ends, shall we?

1. Liosinopril dose. I am not necessarily 'cowgirling' the dose. I have been instructed to halve or discontinue the dose if I have hypotension. So me dithering about 5mg vs. 10mg is something I am 'allowed' to do.

Once I get the official tilt table results, which I assume will be 'normal', then I'll go back to the PCP and point out:

1.Blood pressure medication doesn't work
2. I swing high and low along with feeling like I'm going to pass out-- it is just a matter of time before I really do pass out, I'm right on the edge when it hits.

Maybe I need a different medication?

A body transplant?

2.Pheo

Everything I'm reading suggests that pheo be ruled out as there is an obscure chance of it being pheo. It comes up again and again in the differential diagnosis. It's like it's stalking me.

I don't think my blood pressure is going high enough for pheo, I get that. The cycling though can be pheo, it doesn't have to be consistently high.

Again, I don't think I have a pheochromocytoma but I do think it should be ruled out. Does that make sense?

Also, I AM growing small little tumors in multiple places. It is not outside the realm of possibility that I've managed to grow one in a spot where it can wreak havoc.

And I keep going higher despite blood pressure medication. Perhaps it is as simple as trying a different medication. I don't know.

I am just suspicious of my body, it's guilty until proven innocent.

3.Regarding how multiple blood pressure readings skew results. I am scratching my head. They do whatever the hell they want to at the hospital and it's okay, but when I check BP at home, I have to be sitting, I can't have eaten, my bladder has to be empty. God forbid I cross my legs.

But at the doctor's office? I can be talking, laughing, standing, sitting and have my BP taken so often and so tightly here I am a week later with broken blood vessels under my skin and that? Is okay???

Makes no sense to me.

Notes

1. I bought some shoes. They are open toe. I have ugly feet. This should be interesting. I guess this will be my New Year resolution, to get my feet in decent shape. Thanks to the PCOS, I have terrible skin and paper thin nails that peel if I even look at them funny.

Here are the shoes. They are cute. Also on sale and I had a gift card from Christmas.
Then I found a pair of Ugg boots. Finally. Same deal, on sale and Christmas gift card. I have been looking for something affordable and comfortable for months. This was a major score for me.




Mostly, what I'm saying with all this shoe talk is I got out of the house and went shopping and felt GREAT and had a GREAT time even though my blood pressure was a bajillon over a million, but whatever I was SHOPPING without feeling like I was going to pass out! Wheeeeeee! We even went out to lunch which I haven't done since forever.

I also got a swim suit for the toddler as Grandma bought her some swimming lessons for Xmas. I was very buzzed with the joy of shopping and just being normal for once.

Here's the swim suit (like you care, I know, but the amount of writing I'm doing on this little shopping trip is in direct proportion to how happy I was about it, humor me). The toddler loves it and has been doing ballet performances in it since I brought it home.



2.A relative sat next to a head honcho from a major diet company (think W and W) on the flight home and, due to their visit with me, they knew to ask about low carb. And the head honcho said everything was going low carb.

Yeah, but like I told my relative they aren't ever going to call it low carb because low carb has such bad press. They'll develop their marketing from the low sugar angle. When people don't lose weight because they still eat too many carbs--because it's not just about sugar--the major diet companies can still blame the victim and pimp the next latest and greatest ponzi diet scheme. Very nice marketing cycle they've developed for themselves!

Also, the more mainstream low carb science endorses a low fat paradigm which is not what the good low carb science supports. So it's only partial progress.

But still progress. Another 100 years of murky science and Big Ag food politics and we may all finally agree.

3.Said relative kept marveling at the food I made over the holiday.

"This is low carb?"

What did they think I ate? Baby poop? Dog hair? Insects?

People are funny.

Upon further questioning, I was told "your cooking has improved immensely."

That's good. I think.

I Am Going to Explode

I exercised yesterday and today I am dragging. Not sure if it's the exercise or the fact the BP is going nuts.

146/124. HR 97.

That was last night with blood pressure medication. All I did was stand up.

Jeez.

If I'm sitting down, it's fine. So far. I've had both high and low readings while sitting in the past.

If I'm up, it spikes and sometimes bottoms out.

No bottoming out yesterday.

Just up and up and up.

So I sat and sat and sat (aside from exercising which was the last time the BP was okay).

The workout was fun at least.

I hope I can do it again.

My blood pressure confuses me.

Wildly Swinging Experiments

The blood pressure has been symptomatic of late. Yesterday, I got that gaspy can't breath feeling and felt the need to hold onto something (no 'look ma no hands' for me on this roller coaster, I'm all about hanging on for dear life and praying I don't puke and/or pass out).

Since we reproduced this sensation during the Tilt Table Test I figured my blood pressure had either crashed or was coming out of a crash and morphing into super high blood pressure.

So I started monitoring the blood pressure.

This first block is me sitting and not feeling so hot followed me wondering why I feel so weird with pretty decent blood pressure. Maybe dropping from a high?

• 116/81 1:51 80
• 122/85 1:55 78
• 121/80 2:03 85
• 119/77 2:13 80
• 113/77 2:20 77
• 115/80 2:29 80

Now, I'm standing and taking BP at random intervals as I move about the house. Just because I'm curious. Check out the readings in bold.

• 126/77 2:33 79
• 76/53 2:36 92 This one is so bizarre, I kind of want to dismiss it as maybe an error. I would think I would've passed out with that kind of drop, but I was barely symptomatic.

• 140/94 2:37 85
• 130/98 2:41 85
• 144/97 2:46 87
• 135/54 2:49 89 I felt this one more than the first one. I imagine as the diastolic drop was 97 to 54 instead of 77 to 53. Much bigger drop.
  
• 130/86 3:30 78
• 130/88 3:35 77

This pretty closely mimicked the trend seen during the Tilt Table Test, however, my heart rate was much higher during the test.

So any way, I walked through the house with the BP monitor strapped on my arm like a good little hypochondriac and wondering what the hell I should do about all this.

I ate a pickle since salt seems to help. Except I was not consistently super low. In fact, I was trending high.

But I thought a whole 10 mg of Liosinopril might be too much and maybe not so safe considering how low the lows were. After hemming and hawing and reading large swaths of medical textbooks on Google Books--which didn't help at all other than I now know people of Asian descent lower their blood pressure more than any other ethnicity through simple weight loss. Just FYI.--I cut a Liosinopril in half, figuring I could always drink pickle juice if I bottomed out, right?

Also, I had another adult home so if I did tank badly, I was not unsupervised.

My hope was that the Liosinopril will help everything even out. It may have done that in the past (or I just had a 2 week run of perfect blood pressure, who knows?).

I keep trying to find information on blood pressure and it's just not there. I think I've figured out that hypertension should not cycle so wildly, but I'm not absolutely sure. The reading I've found says hypertension can go from normal to high and by omission it must not cycle from hyper to hypotension. I am still looking for a decent explanation of labile hypertension. I've been reading about dysautonomia stuff and pheochromocytoma (did I spell it right?).

Right now I really hope there will be some interest in ruling out pheo-whatsit and I am wondering about dysautonomia. I wish I knew the highs and lows of my heart rate and the times during the Tilt Table Test, but I was only paying attention to the BP readings.

All I know is the experiments will continue until things improve.

Poor Inhaler Design Causing Asthma Attacks?

Note from Management: Ads have been added to this blog. Do not click them. Yes, that sounds weird, but sympathy clicks are actually fraud so don't do it. Dr. Phil (yes Oprah's Phil) has graciously been inundating me with traffic by using the exact same sequence of words I did on this blog (months ago) as the name for his big diet program. So traffic. The ads are for the random Dr. Phil people.

This is something like the fourth time that I've gotten near the end of my combination asthma inhaler and experienced a flare up of symptoms. It's beginning to look suspicious.

This time around, I started getting skin and hair changes at about the 20 dose mark; greasy skin with a weird texture and eczema like bumps all over my scalp.

When this has happened in the past, it's been a sign that I hadn't noticed my steroid inhaler was empty.

(Yes, I have sucked on an empty inhaler for way too long before. It happens. See also poor product design by drug companies because if the counter was readily visible this would not happen. Duh.)

But I'm paying attention and the problem isn't me being absent-minded, it's that, as the dose counter spins toward zero, the asthma dragon wakes up and flexes.

So last night I arbitrarily switched to a brand new inhaler and voila! my symptoms are now abating.

I have never liked the dose counter on the inhaler I have now and I've had concerns about its accuracy. What I do about those concerns, I don't know.

I've saved the inhaler and am thinking I'll call the pharmacy first. I'm sure no one will care, but I would like to file some kind of report with whoever tracks this kind of stuff.

In a similar vein, did anyone catch the 60 Minutes segment last week on Big Pharma being bad? Very disheartening. The one problem I continually see with our economic model is that the moral fabric is inherently weak, profit divorced from morality is destructive as we've seen time and time again. I myself have been asked to do illegal (and dangerous) things with hazardous materials to further profit and political agendas. I refused and risked my job in doing so.

The people willing to do the right thing are never the ones in upper management.

Anyway here's the segment. It's horrifying.

PS. I've put a static Amazon link on the side bar. THANK YOU to anyone who uses it to shop. Again it's anonymous, I won't know it's you or even if anyone used it, but I do earn a small commission. Sadly, right now, every penny counts.

Tilted

Well that was interesting.

Not as boring or relaxing as all the nurses promised either.

First, the asthma has been a pistol. I'm not sick, but I have a cough and gunk in enough quantity that the asthma is flaring. So the pulse ox wasn't its usual 100 and I did not want to jack up my blood pressure and heart rate with albuterol right before the tilt table test. I just tried to breathe through all the tight gunk.

So I was wheezing and not feeling my best.

They did get the IV in one stick. Note of interest, it takes a couple weeks for blown veins to be stickable again. I thought they could stick me through the bruises. Not so. In fact, because of all the other sticks from the ACTH Challenge there weren't so many veins left to choose from. At least that's what I was told today.

The nurse got me in one stick though. In an odd location, but it worked. Awesome nurse.

Also, I did the heat pack in the car and I hope that helped.

I think, from here on out, I will be very verbal about how horrible a stick I am since my karma delights so in proving me wrong. Clearly that is the solution to my vein woes. If I am your patient, don't laugh at me on this one. It works.

Actually, I have no health problems whatsoever. Nothing wrong at all. Why I can just stop steroids cold turkey right now.

Ah, if only it were so simple, right?

The tilt table test did actually reproduce the peak and valley nature of my blood pressure. But I did not pass out, not technically. I had a lapse where I lost time, faded and was disoriented, but not a true state of unconsciousness.

The BP went from 141/89 to 128/59. That was brutal. I was short of breath, couldn't think straight and I didn't dare look at the floor. The lines on the EKG monitor went all squiggly too.

After that drop my body went into overdrive, my BP skyrocketed to 150/101 along with my heart rate at 101. I began to sweat and feel jittery. Very odd.

I had another drop too, but the diastolic (bottom number) was still relatively normal so I didn't 'feel' it as much. For me, it's when the diastolic is in the 60s or lower that I start to have problems.

I have no idea what this means or if it is relevant or if the doctors will even read anything into it. The nurse seemed nonplussed and they do this stuff every day so I guess I was normal.

Ha.

They actually told me it's rare for someone to pass out, which is what constitutes a 'positive' tilt table test and that I should not expect anything to happen.

I expected nothing, but it seems what I got was more gray, more in between health stuff no one will find relevant.

As for the test itself, in case anyone is looking for what to expect from a tilt table test.

You don't eat or drink before.

You get an IV, BP cuff and EKG and Pulse Oximeter.

They strap you to a table.

Have you lay at an angle, with the head down for a while ,maybe 10-15 minutes.

Then they move the table to a standing position and you stand for an hour.

All the while they are monitoring your blood pressure and other vitals.

It doesn't sound like much, but it was more strenuous than I anticipated. The blood pooling in my legs was uncomfortable and eventually I went numb.

When they tilted me back to a prone position after an hour, the blood rushing from my feet to my head was nauseating, I though I was going to throw up. And I was short of breath a lot (but the asthma was pretty active though). Then there was the flushing and sweating and pounding heart. So it's much more physical than just lying there like a rag doll.

When it was over, I wanted to take a nap.

So that is your body on a tilt table test. Any questions?

Tomorrow

So tomorrow is the tilt table test that will be absolutely useless I am sure.

I have to have an IV.

*rolls eyes*

*looks at all the bruises still healing and sighs*

I warned the nurse I was a tough stick.

Let's hope I've tempted fate enough so that it proves me wrong.

I was also thinking I would take a hot pack with me in the car and use it on my arm. You know, try to avoid ruining yet another shirt in the clinic's bleached out sinks.

See ya on the other side.

Sanitizing and Thinking About Password Protection

Now that I'm actively trying to re-enter the work force, I am attempting to sanitize my online profile.

I am pretty careful and good about keeping things anonymous, however, I have heard rumors that prospective employers can harvest your IP address from emails and use that to track online activity. In addition, another rumor says that Google will provide access to all information on a user for a small fee. Google owns Blogger so yeah, a concern.

I am attempting to ascertain what is and is not true as well as ways I can keep my IP address private.

At some point this blog may have password protection.

The password will be prednisonehell. Jot it down somewhere in case I have to go private.

Afraid to Say Anything

But, I am doing okay.

Lungs aren't too gunky. I seem to have kicked the bug out.

My energy is okay, could be better, but definitely an improvement.

I can see exercise in my future*.

So...

Frantically knocks on wood.

Throws salt over shoulder.

Kills chicken.

Shoves pins in voodoo doll.

Calls 1-800 psychic line.

Hubby is NOT doing well though. He's wheezing. I think I gave him asthma. I am wondering if he needs antibiotics as he's been sick a while now.

*At least until the next taper! Which I will probably undertake at the end of the month. I'm trying to sit on my hands and take this slowly.