Showing posts with label appearance. Show all posts
Showing posts with label appearance. Show all posts

Friday, August 29, 2014

Episode 44: How Can a 54-Year-Old Woman This Damned Sick Look This Damned Good?

Okay, I'm taking all of us on a little Mary Dell ego trip today.

Actually, I started this episode a year ago, when Honey also took the photo I'd planned to accompany it. I'm a year older but don't look much worse than I did then. I've moved the photo to the second page of this episode to save virgin eyes from seeing it if they don't want to. Hey, it's not pornographic--just a bit suggestive.

Yes, come with me .... hop on my magic carpet ride to a land where the marvelous science of photography (without any tricks such as PhotoShop) suggests that I may not be so darned hideous after all--certainly not too bad for a gal of my advanced (50+) years. You see, my entire life, I've always felt unattractive--or, at least, the core of me did. I could fake being attractive and convince men I was attractive, but I never felt it deep inside.

And now, ironically--how many ironies does chronic disease rack up? (pun intended)--Answer: A LOT--the attractiveness that others see is doing me a disservice (though I'm happy to have it regardless).

The fact that I don't look like a middle-aged, chronically ill woman means that many health professionals I see once or twice think I'm malingering or trying to get attention or some other stupid shit, and they don't take me seriously. For the latest egregious example of this phenomenon, see Episode 41 and my nightmare consultation with a neurologist at Johns Hopkins Medical Center.

The fact that I don't look like a middle-aged, chronically ill woman means that co-workers, friends, even my sister and one of my sons, neither of whom sees me nearly enough, have hinted at finding my complaints hypochondriac in nature. With my son, I'm thinking it's sort of denial--no one wants a sick mom. With my sister, I think it's just that I'm the youngest and can't possibly know what I'm talking about, ha.

But I love them both dearly, of course, no matter what. None of this is easy to take in, even as I experience it day by day.

Hopefully, given the latest neuromuscular diagnosis, signs, and symptoms, those who know me well no longer doubt me. One thing my mom pounded into my head during the 29 years I was blessed to have her in my life was honesty. And the last thing I want to do is waste medical dollars when so many others need care.

And this pic is TAME compared to all the sexting going on, so no big deal there, Mom!

No, I don't look sick.

In fact, I look damned good.

So how can a woman who looks this damned good really be this damned sick?

Saturday, December 14, 2013

Episode 32: Wegener's Granulomatosis Rears its Ugly Nazi Head, and It's Got a Hole Right in the Middle of its Face

Okay, so maybe he was a Nazi and maybe he wasn't, but based on some research that he WAS, the doctor whose name stands for granulomatosis with polyangiitis, today's "preferred," non-epynomous name for what used to be called Wegener's Granulomatosis, I'll try to use the newer name, or GPA for short.

Whatever the hell it's called, it's hell.

Okay, I don't even have a firm diagnosis at this point--or, rather, I don't have the labs to back up the clinical diagnosis I was given by my Johns Hopkins rheumatologist, but given the fact that this is the place where the best specialists in most fields hang their pointy hats, I have to accept that she may well be right.

When I saw the kidney/vasculitis specialist for Wegener's a few months ago, she told me I needed to see the rheumatologist on an ongoing basis.  I'd told her I wanted to cancel those appointments because my symptoms weren't bad at all--I don't enjoy these visits to Baltimore physicians and would like to minimize the pain in the ass of having to go there.

But today I just want to bitch a little about GPA or whichever vasculitis is apparently destroying my body one tiny bit of artery at a time.  So, to update all my loyal fans (I think my only readers are what's known as pirate or vampire sites that click up your viewings though no one is actually viewing anything), these are the symptoms of GPA I've had and that are currently emerging.

I'm not going into all the other damned conditions I have; in one of my earlier episodes I list them, and it's just too depressing to go through again.

So here's the timeline, more or less, for JUST GPA in my life: