Tuesday, November 13, 2012

Spooked by Patients with Asthma

The hubby's coworker's adult child just died of asthma today. My husband is beyond freaked out about me at the moment.

I watched him tell our pastor about the death and the whole time his eyes were on me, wide and full of horror.

"Don't die," he tells me later.

"I'm doing my best," I respond. "Why the f*ck do you think I'm pureeing and consuming spinach on a regular basis?" (Yes, I really do swear a lot. Actually more in real life than in print. Prepare yourself.)

I then went on to explain that death by asthma is usually folks who didn't have access to medical care or didn't follow through on their medical regimen or people who just don't respond well to treatment.

I tend to not respond so well once the asthma is full bore, which is a concern.

But I've been fairly lucky so far. Bad bugs but no intubation, which is a bit of a miracle.

I also take my meds for the most part. Oral or IV steroids do diddly squat for me when I'm flared enough to need them....so I hedge on those. I would prefer kickass neublizer treatments as well as IV magnesium, which are very effective for me, but no one ever listens to me.

Stupid patients. They don't know nothing. Standard of care all the way!

Strange to think that if I do kick the bucket due to asthma the root cause will be perceived to be lack of compliance to the medication regimen, not that no one listened to me.

If only she would've taken the steroids as directed...

Ah yes, if only I didn't want to completely jack up my adrenal system. I prefer not to breathe as opposed to take meds that won't work and just cause more problems, thank you.

Anyway, I do pay attention to my symptoms and deal with them fairly proactively. I'm stocked for bear at the moment having just refilled all my meds. Picture a plastic garbage bag...that's the amount of prescription stuff I brought home last week.

People were looking at me with pity--that's how much crap I had-- and I fought the urge to explain 'No, really, I'm not sick, this is just routine stuff.'  That probably would not have made any sense to them because since when do not sick people take home that many meds?

Believe it or not, I still have to go back for more. Most of the bulk is the stupid 90 day fill requirement from my insurance.

In a similar vein, I had an interesting conversation with a friend who was poo-pooing their sibling's outlook on health. The sibling has cancer and is quite fatalistic.

Out of the blue,  I interrupted my friend's kvetching and asked, "Do they have a chronic illness?"

Why yes they do and it's fairly significant asthma. 

I attempted to explain  that chronic illness warps your view of things. There came a point for me where I thought, "I'm dealing with all this bad health stuff and I haven't even hit the heart attack, cancer or age related health problem years. Holy f*ck is my future gonna suck."

People don't realize that asthma is not a minor illness, but it really can be a big deal, and once your health is a big deal on a somewhat regular basis, you just never feel safe again. You are not only sick but you experience all the side effects (most of which no one warns you about), gaps and failures in healthcare...not exactly a recipe for unblemished optimism.

I have to say this exchange strained my sense of friendship as my friend was quite superior in their 'I take care of myself and think positively and that's why I'm healthy' schtick.

Which, of course, brings the corollary into play that I don't take care of myself and it's the way I think that makes me sick. That's always a fun one to bring out at parties, am I right? In reality, there are lots of folks who do everything right and still end up with cancer....case in point one of my relatives.

Last but not least in this litany of patients with asthma...there's the kiddo's classmate in school...overweight and asthmatic with lots of steroids. I broached the subject of weight and steroids with the mom and whaddya know? No one ever told her. Basically, medicine is the root cause of diabesity in some patient populations.

Patients need to be told about how steroids impact weight and what to do to counter it. I do not understand why there is such institutional silence on this topic, not when steroids are so widely prescribed. Is it because no one takes the time to realize that no, it's not one five day steroid burst, but three of those in a month every month for years on top of IV administered and inhaled steroids?



2 comments:

  1. So true

    UGH on the I think positive so I'm healthy thing. The denial of a person who's yet to have real health challenges...

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  2. How sad about your husband's coworker.

    The woman who made my wedding dress educated me pretty well about this. We were both clerks at the Midwestern B.A.T.H. and she was severely asthmatic and carrying a lot of extra weight. Her health was such a mess and so much of it went back to the asthma and the treatment for it.

    My own limited experience with steroids is that docs don't give you a lot of info - e.g., I was never told that after using the nasal steroidal spray that was prescribed for me, I should rinse my mouth with water. I now have recurring thrush infections. I haven't used the spray in over 5 years, so that is the gift that keeps on giving.

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If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

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