And Just Like That, It's Cocktail Time

I woke up yesterday, after writhing with nausea until 2am, and was fine.

No need for albuterol or nebulizer.

So farking weird. I want to accuse myself of making it all up, but I was there! You would never know I had intractable asthma the entire day before--nothing I did worked. And to go from the narrow edge of an adrenal crisis to not,in what seemed like the blink of an eye, was just...bizarre. Did my body run a Hail Mary pass at the last minute or what?

Fatigue was okay, with some adrenal burning in my back. If I hadn't needed to drive, I would not have taken any steroids yesterday. Since I had places to go, I did 5mg to play it safe.

Got my vitamin IV and boy, did it stir the pot.

This was my first official Meyer's Cocktail. I don't know what the others are called. Anti-oxidant infusions? But they weren't Meyers from what I know.

Here's the list of what was in my Meyer's Cocktail:

-Vitamin C
-Magnesium Sulfate (with more added later.)
-Calcium Chloride
-Pyridoxine
-Dexpanthenol
-Vitamin B-12 (ah, no wonder I feel so frisky despite being tired from lack of sleep!)
-Vitamin B complex
-L-glutathione
-Glycchrric Acid (that looks misspelled to me, but it's what they wrote down.)

For a second time in three weeks (OMG I've been sick forever), the IV infusion went in and 'broke' the congestion in my lungs loose. I became acute very rapidly and my BP plunged. Hence the additional magnesium, which helped quite a bit.

At the start, the IV hit me like a Mack Truck and took me down. By the end, I was better. Again, better than the ER. Better than the nebulizer. Even if it was the initial trigger, although all that gunk would've caused problems sooner or later anyways.

So I'm tired and wiped and just blah.

Going backwards a bit...the ER visit last week. I filled out the survey for the ER. Not sure if I'll mail it in though. My only criticism is they really didn't pay close attention to my O2 levels and I really needed the doctor to ask me how I felt since it would've triggered me to say 'not better.' (I was too out of it to communicate well, something else that was missed. I think I was just perceived as quiet and no trouble vs. sick.)

In the end, it all worked out, I guess. They were so slammed and I looked better than I was, so I know it wasn't intentional. On the other hand, I feel like maybe it would help to say 'Hey, you discharged a patient whose O2 dropped to 90 after rolling over and sitting up. She left just as bad as when she came in.'

I don't know. I'm conflicted about it. It's also amazing how uneven ER response is to asthma.

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.

Sigh.

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.

The You Don't Have Asthma Curse Explained

I got a comment asking about the 'you don't have asthma' curse, so I thought I would dedicate a post to it.

Asthma is an incredibly common disease but it is also very strange. Well, the asthma isn't strange, it's pretty consistent, the doctors are strange.

First, asthma is a "diagnosis of exclusion" which means the patient has to let the doctor work through a long list of other diagnoses before they'll officially confer the title of asthma.

However, this title is non-transferable.

Go to another doctor or even an ER and suddenly you don't have asthma. Actually, you are a transvestite crack whore with a foreign object up your rectum who is trying to score narcotics--at least that is how you will be treated, with very serious suspicion.

Therapy may be suggested. Never mind you can't breathe well enough to talk.

I believe the official doctor motto of medical stupidity is 'if you haven't wheezed for me personally, then you don't have asthma.'

Which kind of turns asthma into an absurd performance art.

If you can't be sick in the right way, right in front of the doctor, you will be denied treatment. If you don't retest or do what the doctor needs you to do to consign a diagnosis, you will be denied treatment. Even if your medical records are right there in front of them.

Of course there are exceptions, because not every doctor is an idiot, but quite frequently you will be left hanging on the thin thread of oxygen you are subsisting on until the doctor can prove, to their satisfaction, that you really do need a nebulizer treatment or an Advair prescription.

Because as we all know, those drugs are worse than heroin with super dangerous side effects that can kill you in a nanosecond, right? And response to treatment is in no way diagnostic, right? (Except for kids, pediatricians do consider positive response to bronchodilators as indicative of asthma, but I guess that all changes once you hit 18 and start your career as a transvestite crackwhore.)

The other thing that is weird is a methacholine challenge (when properly done) will confirm asthma so I'm not even clear on why it is still a diagnosis of exclusion. My understanding is diagnoses of exclusion are reserved for illnesses that can't be readily tested for. Asthma has a diagnostic test.

Here is a brief list of the times I have run into the 'you don't have asthma curse.'

1. Multiple ER visits. My favorite is the ER doctor who actually had asthma himself but was skeptical about me. He drew an arterial blood gas the old fashioned way to be sure (no pulse ox for me! I'm a lousy crackwhore, remember?). I had to wait until he got the lab results back before he would allow me an albuterol treatment. It was a long wait.

When I was 18, I ended up in a Children's Hospital ER after visiting the boyfriend's family who never cleaned their house and had wads of animal hair in every corner (which I was allergic too). I was so tight, there wasn't enough air movement to wheeze. They didn't think I had asthma (All asthmatics are pathological liars!) and grudgingly gave me a nebulizer treatment after which I wheezed profusely as my airways opened. "OH, you DO have asthma," were the doctor's exact words and inflection.They were so surprised!

As if asthma is the Yeti of medicine. Often talked about, but never seen.

2.The asshole allergist who years ago saw me as a patient and had no problem with the idea that I had asthma. Saw her again 2 years ago in a different health system and suddenly I didn't have asthma and she wasn't going to prescribe my medications despite having all my records. I had to BEG for medication. She also screwed up the methacholine challenge and I had to raise holy hell with the HMO.

She is no longer employed there. I like to think I had something to do with it (but probably not).

3.The pulmonologist who screamed at me "Who said you had asthma? Who gave you a nebulizer?" Asshole. After my pulmonary function tests came back, he shut the f*ck up because my airways were down by 50% and you can't fake those tests.

I could go on, but you get the point, right?

What enables this curse?

1. Inability to recognize that patients can have good air movement even if the patient has lost their small airways. This happens to me a lot. Thing is if you've lost the small airways and don't do something, you're going to lose the big ones too. Better for everyone to keep that from happening.

2.Crappy peak flow meters in ERs and doctor's offices that don't provide good data.

3. Not using pulmonary function testing in the ER. This could actually be a profit center for ERs. There are so many asthmatics I can see this being a win-win for everyone and the information provided is so much better than what you get from the crappy peak flow meter. Someone should do a study.

4.Doctors who expect asthma to conform to some preconceived notion of what asthma is and not understanding that asthma varies from person to person.

5.Seeing so many transvestite crack whores with things up their rectums who want narcotics, that doctors can't see anything else.

6.During office visits, doctors who don't read the damn patient file and review previous lung function testing and other empirical data that is diagnostic of asthma.

7.Doctors who believe if there's no wheeze, there's no asthma. You can be too tight to wheeze. It's in the medical literature, it's documented. Not sure why doctors aren't aware of it.

8.Patients who can't breathe well enough, in emergency situations, to advocate for themselves.

I think that about covers it. Do you have anything to add?

Asthma Army Conscription

Every time my asthma flares up in a bad way, I get a little hyper. Just look at this blog.

In 2006, I tried to come with a strategy to better manage my impaired judgment and poor communication skills when ill. I tried to think about what I could have done differently to change my experience in the ER.

I thought about typing up a note that could speak for me, but felt that wouldn't be well received.

Then, I tried to coach the hubby on how to advocate for me. Except he's just not medically oriented. I could lose a limb and I don't think he would notice. It's not that he doesn't care, he does, but health anything is just not on his radar.

So nothing happened other than I made sure I stayed current with my pulmonologist. And I lapsed into complacency, believing I would never get sick again like that.

Then this latest episode hit and I can't be complacent any longer. I have to find a way to mitigate my own stupidity when I'm sick so that I don't delay care and end up in the hospital again. It costs too much money. It means that the toddler doesn't get the attention she needs. I can't work. These kinds of episodes are not limited in scope, they effect everyone in the family as well as everyone in my social and work circles.

I need to manage this better. It is not optional.

The hubby is going to have to step it up and help me help myself when I'm sick.

As a result, he'll be coming with me to the asthma education appointment. He needs to know asthma like I do.

I hope it will end up being as simple as him saying "Do you think you're getting better?" And if I say no, him pushing me to go to the ER. But I can't count on being aware enough to say no, so he's going to have to know about peak flows and objective measures that indicate an ER visit is necessary.

The obvious one is going to be if I've already done 5 days of steroids and nebulizer treatments at home and still don't feel well, I just need to go to the ER already. It's a no brainer. I mean, I look back at that and I just want to slap myself. HOW could I have been so dumb and not realized this????

I compounded my own misery and there has to be a way to ensure that doesn't happen again.