Episode 71: Feeling Faint: On Severe Heat Intolerance

Today was a beautiful day on the mountain--77 degrees. It doesn't get much better than that.

Today was also one of the rare days on which I am awake during daylight hours. I have reversed circadian rhythm and diagnosed idiopathic hypersomnolence--a condition that researchers now attribute to brain dysfunction. Heat intolerance, too, is a symptom of many neurological conditions.

The sun wasn't out, but the air was was soft, with a freshening breeze. With several hours of daylight left, I turned to my favorite hobby--one that is difficult to practice regularly because of the aforesaid reversed sleep pattern. It's difficult to garden in the dark.

So, to the garden I went, a bit distraught that weeds can proliferate so quickly between my visits to its beds. But there's perhaps no better stress reducer for me than getting my hands into the dirt and yanking out weeds. Because we have had a lot of rain this summer, the mugwort, foxtail grass, and sorrel came up easily. I actually like all of those plants--mugwort for its herbal properties, as I'm a wanna-be herbalist, foxtail for its beauty in fresh and dried flower arrangements, and sorrel for its culinary uses.

But this garden runs along the beautiful stone wall in front of my property, and I must have some awareness of curb appeal as it affects my neighbors and their property values. That being said, I've allowed the milkweed to take off after volunteering--but it grows to some six feet high and looks kind of weedy after the flowers have bloomed. I've held it to the back of the border this year and will continue to let it grow here as a monarch butterfly nursery--or hatchery, rather.

Here's the front corner of my wall,
which I love. This everlasting sweet pea
is no longer there, but I do have some farther
down the wall. This corner now
has hostas and ferns. 

But to get off my gardening tangent, the point of all this is that I pulled out the weeds--and, truly, there wasn't such a huge number of them--and before long I was feeling faint and sweat was pouring from my scalp, face, and the rest of my body.  I wasn't able to spend nearly the time I'd hoped to in the front garden; before I could even remove the detritus from the wall, I had to retreat to the front porch where I rather collapsed on the glider. And, I repeat!, today was 77 degrees, with no sun, absolutely perfect gardening weather. I should have been able to spend hours out there. I don't think I reached an hour--more like 45 minutes--before I had to throw in the towel--er, trowel.

After a couple of hours of relaxing on the porch, the yard called out to me again. Well, actually, the porch railing called out to me. I picked up the clippers and began chopping the new growth of wisteria that winds around the porch railing, saving it to twist and bend it into a wreath. In all I might have clipped eight thin tendrils. I then noticed that the space between the porch and the rhododendron had filled in with new growth, too--and the electric meter lies back there--so I need to keep it clear (though I rarely do, to be honest. Just another of those chores I rarely have the energy for; the list is endless.)

The front of the "cottage"--and the ornamental grass I
had to clear away (though just a little of it). The
rhododendron is right behind it.

At that point, I was pushing myself. I used the clippers to cut away some of the ornamental grass--admittedly not the best tool, but I was feeling weak and faint and sweat was pouring from my pores, so I managed with what I had. I pulled up about ten stalks of jewelweed, and no plant pulls out of the earth more easily than that. I clipped about five or six branches of the rhododendron.

And once again, I felt as if I were going to faint. I was soaking wet from head to toe.

Neither of these ventures into the yard should have winded me in the least. They wouldn't have winded anyone I know who is my age or even older. Especially, need I say again, because of the beautiful weather today.

I haven't felt well since, and now it's 1 in the morning and my head is killing me. I've landed exactly where I spend most of my awake time--flat on the couch.

Honestly, it's summer in general. Not just this day, but the cumulative effect of the hot weather on my body, which just can't take it.

So is this because of my as-yet-undiagnosed neurodegenerative disease? Or is it somehow connected to the Hepatitis C? Who the hell knows. My doctors don't care that much about figuring it out. I was released to yearly checkups by my cardiologist; he doesn't think there's much wrong with my heart despite a history of severe-to-malignant, medication-resistant hypertension with hyperaldosteronism and a series of abnormal cardiac tests (AND being told in 2008, upon admittance to intensive care from the emergency department and being told by the staff cardiologist that I'd probably had one or two heart attacks and was in heart failure--but that's a long story for another day).

I realize this episode is totally self-centered. I haven't reached out to my viewers (all one of you, ha) at all--very bad form. But I'm chronicling my health here because I'd rather bitch and complain to a computer than to my friends and family. They know when I'm not feeling well, but I don't want to bore them with every detail. So you, dear computer, are my confidant, and I thank you.

That being said, here are other resources on heat intolerance for viewers who would like to read further on this condition:

• Heat Sensitivity and Hot Temperatures. Brain & Spine Foundation. http://www.brainandspine.org.uk/heat-sensitivity-and-hot-temperatures

• "Sucking the Fun Out of Summer." The author has heat intolerance due to Chiari Malformation and POTS (I believe I have the latter, which is associated with autonomic dysfunction):  http://www.brainandspine.org.uk/sucking-the-fun-out-summer-my-experience-with-heat-intolerance

Episode 37: Down the Rabbit Hole Yet Again: On Electronic Health Records and the Digital Patient

First, a disclaimer:  My purpose in sharing my experiences in the illogical, upside-down world of today's U.S. health care system is NOT to denigrate the many fine individuals working as health care professionals--physicians, nurses, technicians, and all the other good folks who support the care of an endless stream of patients, many of them seriously ill.

I've been most fortunate in having access to some of the best specialists in their fields at Johns Hopkins Medical Center and the National Institutes of Health. I salute all who truly care about their patients. No doubt, they are as frustrated as I in finding themselves in this dark maze populated by wacky characters with nonsensical expectations. I know they also despair about the care, or rather lack thereof, this nation gives to its sickest patient of all--its health care system.

Today, the fun show reached another high, given how low it was. That's how it is down the rabbit hole--what's up is down and what's big is small and what's wrong is as wrong as wrong can be.

Don't fall in, Alice! It's scary as hell down there.

Episode 22: From Bad To Worse Part Deux

In the pilot of The Mary Dell Show, I explained how the name of the show is based on my brother's recording me as a kid on his reel-to-reel tape player as he interviewed me about newsworthy topics such as how to catch lightning bugs.

When seeing that gigantic tape player on the foyer floor as my parents said good-bye to my big brother on his way to Georgia Tech, the impact of his leaving hit me for the first time.  That tape player defined my brother, and it defined the relationship I'd had with him my whole life.

That would mean no more Mary Dell shows, no more Walter Kronkite-depth interviews on the workings of my then eight-year-old mind.

And I mentioned that as my first heartbreak.

My second came when my baby was born two months early and was given a 50/50 chance for life in his first 24 hours, and a third came about nine months later when I learned he must've had a stroke while fighting for his life in the Isolette for 26 days, and his entire left side was partially paralyzed. And a simultanous one when learning, at the same time, that he had craniosynostosis, a malformation affecting the skull bones, which explained the odd shape his had developed into by then. By the time he was a year old, he'd had two neurosurgeries to chisel open the sutures between those bones, which had fused prematurely and forced his brain to grow in a long shape from front to back.

In a flash of nature's ironic fun with us, Jason had a third surgery to add plastic to those same sutures because, having been forced open with hammer and chisel, they refused to close again, as they do in most kids' heads well before then. And in yet another flash, nature took away his hair when he was in his early 20's, leaving his skull, with its scars and bone ridges exposed and no camouflage at all for it shape which, thankfully, had greatly improved after his surgeries but still draws attention until one gets to know the person he is, and of course it doesn't matter at all then. Nevertheless, life has been tough for him, and appearance matters in this superficial world. He's fortunate, though, that he is a very good looking guy, so any flaws in his appearance quickly disappear once you get to know him, as is true for all persons with unusual physical characteristics.

[N.B. June 27, 2014.  In an interesting--no, groundbreaking, for me--twist, Jason's early baldness may have been for the exact same reason he was born with craniosynostosis--a genetic condition that I'm convinced runs in my family called myotonic dystrophy. The two conditions were just recently connected genetically by scientists. I'd been sure since this happened that there was a reason for my pregnancy problems and Jason's issues, something that would explain both--I was not satisfied with the explanation given at the time that his craniosynostosis was the result of a random gene mutation. Of course, doctors knew so much less than about our genes. The Genome Project was merely a dream then. It's taken me 35 years and a whole lot doctors' appointments, tests, medical advancements due to research, and personal sleuthing to finally come, I believe, to the answer. I'll know for sure soon, since a Hopkins neurologist has reviewed and agreed to take my case, and I'll see her on July 9.]