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?
Well, truth be told--I don't always look this good. Looking good takes a little effort, and though I've never been a heavy-makeup kind of gal, I would never have gone out of the house looking like I often do these days, let along go to work looking the way I do very frequently these days.
I just don't have the energy to care--hey, I'm getting out of the house and going to work!--what more do you want?
Despite these mostly breathless days these days, I manage to look good those rare times when I've got enough energy to make the effort, as was true when these photos were snapped. I mean, I didn't really have the energy for a photo shoot on that or most any day, but sometimes pictures are worth a thousand words.
Okay, I'm no Helen of Troy. Sometimes they're worth a few hundred, at least. Words, I mean, not dollars, ha. Or ships.
And so I share these photos so others might understand that chronic disease can be invisible. I don't mind at all becoming the poster old lady for chronic disease if that draws attention to the fact that a person doesn't have to be morbidly obese or bone thin or whatever one's vision of someone with chronic disease might embody to actually suffer (and I mean suffer) from a chronic disease or--as in my case--a constellation of chronic diseases.
Weirdly enough, while researching my current symptoms not long ago, I came up an article describing them to a T--shortness of breath, exhaustion, muscle weakness, oxygen desaturation, and irrepressible hypersomnolence--i.e., I just want to sleep my life away, even though I have so much I want to get up and do!--and one of the findings in a couple of medical studies on a condition with those very symptoms was "youthful appearance."
Okay, I'm not that youthful looking; that's why I didn't even note the name of the syndrome. (Actually, I'd have to research it again to find it.) But I do look more youthful than a lot of women my age when I've got my face on. Could my slow breathing and slow heartbeat have made my metabolism slow down compared to most others'--so that I'm not aging as quickly?
Ha! Just kidding. I had you going there, didn't I? But two things are true:
1) Chronic disease sux.
2) I'm not dead yet.
Most days I drag myself to work with no makeup, unwashed hair, my last shower the day before or the day before that--I just do not have the energy to take care of routine tasks such as these, as disgusting as this might sound.
Believe me, before I was sick I would NEVER have left the house without my hair done just so and my makeup perfectly applied, my outfit looking good and certainly not one that I might have worn earlier in the week or even the day before, and I'd shower and/or bathe every single day practically before moving.
Now, most days, I really don't give a shit how I look.
Nowadays, I'm thrilled to make it out the door and in to the office. I know I don't pull myself together too great sometimes because my coworkers have reacted dramatically to my good days, telling me how bad I usually look (in so many words), so this photo is deceiving.
I just wanted to catch your attention, to be honest, but for a good cause: Those of us living with chronic disease who are fighting for our lives really, REALLY don't need the condescension of doctors or coworkers or friends or family or strangers who think we're just trying to get attention or are just being lazy.
Ha, as I read that last sentence, I realize I may sound like an unreliable narrator, since posting a photo such as the one in this episode suggests that I DO want attention! Truth be told, I've "sat" on this episode for a year because my Protestant mother's disapproval kept wagging in my head.
In fact, within a day of posting this episode, a glance at my statistics page revealed (ha) that my photo has already been posted to a Free Porn XXX site. Have my media dreams been realized at last? Ha. That was most definitely NOT my goal when I posted the photo.
I'm sacrificing myself for a larger cause.
All of us with chronic disease who don't look sick are subjected to suspicion by far too many out there whom we love, respect, and even go to for health care.
Just because we don't look sick doesn't mean we aren't sick and suffering, and your doubt when we tell you our woes only adds to the psychic pain that goes along with the physical pain of chronic disease.
Did I say chronic disease SUX?
My body says NO. It just happens to do it looking pretty good--a kind of cruel twist, though I'll take it.
Now, risking complete embarrassment, I'll share my latest little rap about chronic disease, for your entertainment pleasure. And then I'll sign off for today.
Like I said, my picture should say at least a few hundred words, so, for once, I'll be concise!
(NB You have to adjust the rhythm of this rap, as arhythmic as it sounds, at least at the beginning, the way the best do, i.e., torture the words into the rhythm.)
Chronic Disease Rap
Can't breathe, where's my pulmonoloGIST
Hormones jacked, sheee-it,
Need that endocrinoloGIST!
Can't hold my piss, call my nephroloGIST
Mucus membranes effed,
get the gist, Mr. RheumtoloGIST?
ENT, MRI, CBC, EMG, can you say
hematoCRIT?
So tell me, Hopkins hematoloGIST
is it polycythemia ve-ra or just
no motherfuckin' air can't breathe?
You got the shizzle in yo livizzile
and the gastroenteroloGIST
will insist, will stick you with
A bi-op-SY for yo' M-effin'
Hepatitis C--no stigma
but they don't act that way--
Hey, Snoop, I'd wave my
motherfuckin' hands
in the mother'fuckin' air,
but ain't got no air,
arms too weak to hold them there,
ain't got no game,
I'm fallin' to the floor
I'm crawling to the ED door--
So, immunoloGIST, I gotta know,
is it polyan-gi-i-tis with
gran-u-lomaTOsis?
Shee-it, feel sick,
heart's beating slow
but sometimes quick,
tachycardia, dyspnea,
bradycardia, tachypnea,
atrial defib-ril-lation,
hypo-e-sis, cardio
my - o -pa - thy
and don't forget your anxiety,
your ADHD, and, honey,
always remember
your sweet, sexy . . . . . . . .
Zzzzzzzzzzzzzzzzzzzzzzzzzzzzz
Okay, needs work. A lot of it. But part of my interest in learning about my--and my family's and friends'--health conditions is the immersion in a new language. I could never have dealt with the blood and guts required of medical or nursing students, but I've always had a strong interest in neurology/neurobiology. I have more in common with Amy Farrah Fowler than I care to admit! Ooops, just did. Perhaps this interest in the brain started when my eldest son was born with neurological problems.
I find it a strange sort of poetic justice that my smorgasbord of health problems are culminating in a brain disorder--a neuromuscular one, that is. I'm sure we'll be tripping the light fantastic on that topic in future episodes--with or without the use of our lower limbs which, as loyal viewers (should one or two exist) may remember came up in a dream I had a couple of years ago.
One of my theories is that dreams are, or frequently include, communications from our cells. In addition to their other methods, pain, stiffness, swelling, etc., perhaps they send messages through our cerebellum to end up as content in dreams, mixed, as it were with the thoughts and experiences of the day or days before we fall into the thought pool of sleep. In other words:
Zzzzzzzzzzzzzzzzzzzzzzzzzz
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?
.JPG) |
| An UNenhanced 54-year-old bod-- No wonder docs don't believe I'm sick! |
I just don't have the energy to care--hey, I'm getting out of the house and going to work!--what more do you want?
Despite these mostly breathless days these days, I manage to look good those rare times when I've got enough energy to make the effort, as was true when these photos were snapped. I mean, I didn't really have the energy for a photo shoot on that or most any day, but sometimes pictures are worth a thousand words.
Okay, I'm no Helen of Troy. Sometimes they're worth a few hundred, at least. Words, I mean, not dollars, ha. Or ships.
And so I share these photos so others might understand that chronic disease can be invisible. I don't mind at all becoming the poster old lady for chronic disease if that draws attention to the fact that a person doesn't have to be morbidly obese or bone thin or whatever one's vision of someone with chronic disease might embody to actually suffer (and I mean suffer) from a chronic disease or--as in my case--a constellation of chronic diseases.
Weirdly enough, while researching my current symptoms not long ago, I came up an article describing them to a T--shortness of breath, exhaustion, muscle weakness, oxygen desaturation, and irrepressible hypersomnolence--i.e., I just want to sleep my life away, even though I have so much I want to get up and do!--and one of the findings in a couple of medical studies on a condition with those very symptoms was "youthful appearance."
Okay, I'm not that youthful looking; that's why I didn't even note the name of the syndrome. (Actually, I'd have to research it again to find it.) But I do look more youthful than a lot of women my age when I've got my face on. Could my slow breathing and slow heartbeat have made my metabolism slow down compared to most others'--so that I'm not aging as quickly?
Ha! Just kidding. I had you going there, didn't I? But two things are true:
1) Chronic disease sux.
2) I'm not dead yet.
Most days I drag myself to work with no makeup, unwashed hair, my last shower the day before or the day before that--I just do not have the energy to take care of routine tasks such as these, as disgusting as this might sound.
Believe me, before I was sick I would NEVER have left the house without my hair done just so and my makeup perfectly applied, my outfit looking good and certainly not one that I might have worn earlier in the week or even the day before, and I'd shower and/or bathe every single day practically before moving.
Now, most days, I really don't give a shit how I look.
Nowadays, I'm thrilled to make it out the door and in to the office. I know I don't pull myself together too great sometimes because my coworkers have reacted dramatically to my good days, telling me how bad I usually look (in so many words), so this photo is deceiving.
I just wanted to catch your attention, to be honest, but for a good cause: Those of us living with chronic disease who are fighting for our lives really, REALLY don't need the condescension of doctors or coworkers or friends or family or strangers who think we're just trying to get attention or are just being lazy.
Ha, as I read that last sentence, I realize I may sound like an unreliable narrator, since posting a photo such as the one in this episode suggests that I DO want attention! Truth be told, I've "sat" on this episode for a year because my Protestant mother's disapproval kept wagging in my head.
In fact, within a day of posting this episode, a glance at my statistics page revealed (ha) that my photo has already been posted to a Free Porn XXX site. Have my media dreams been realized at last? Ha. That was most definitely NOT my goal when I posted the photo.
I'm sacrificing myself for a larger cause.
All of us with chronic disease who don't look sick are subjected to suspicion by far too many out there whom we love, respect, and even go to for health care.
Just because we don't look sick doesn't mean we aren't sick and suffering, and your doubt when we tell you our woes only adds to the psychic pain that goes along with the physical pain of chronic disease.
Did I say chronic disease SUX?
My body says NO. It just happens to do it looking pretty good--a kind of cruel twist, though I'll take it.
Now, risking complete embarrassment, I'll share my latest little rap about chronic disease, for your entertainment pleasure. And then I'll sign off for today.
Like I said, my picture should say at least a few hundred words, so, for once, I'll be concise!
(NB You have to adjust the rhythm of this rap, as arhythmic as it sounds, at least at the beginning, the way the best do, i.e., torture the words into the rhythm.)
Chronic Disease Rap
Can't breathe, where's my pulmonoloGIST
Hormones jacked, sheee-it,
Need that endocrinoloGIST!
Can't hold my piss, call my nephroloGIST
Mucus membranes effed,
get the gist, Mr. RheumtoloGIST?
ENT, MRI, CBC, EMG, can you say
hematoCRIT?
So tell me, Hopkins hematoloGIST
is it polycythemia ve-ra or just
no motherfuckin' air can't breathe?
You got the shizzle in yo livizzile
and the gastroenteroloGIST
will insist, will stick you with
A bi-op-SY for yo' M-effin'
Hepatitis C--no stigma
but they don't act that way--
Hey, Snoop, I'd wave my
motherfuckin' hands
in the mother'fuckin' air,
but ain't got no air,
arms too weak to hold them there,
ain't got no game,
I'm fallin' to the floor
I'm crawling to the ED door--
So, immunoloGIST, I gotta know,
is it polyan-gi-i-tis with
gran-u-lomaTOsis?
Shee-it, feel sick,
heart's beating slow
but sometimes quick,
tachycardia, dyspnea,
bradycardia, tachypnea,
atrial defib-ril-lation,
hypo-e-sis, cardio
my - o -pa - thy
and don't forget your anxiety,
your ADHD, and, honey,
always remember
your sweet, sexy . . . . . . . .
Zzzzzzzzzzzzzzzzzzzzzzzzzzzzz
Okay, needs work. A lot of it. But part of my interest in learning about my--and my family's and friends'--health conditions is the immersion in a new language. I could never have dealt with the blood and guts required of medical or nursing students, but I've always had a strong interest in neurology/neurobiology. I have more in common with Amy Farrah Fowler than I care to admit! Ooops, just did. Perhaps this interest in the brain started when my eldest son was born with neurological problems.
I find it a strange sort of poetic justice that my smorgasbord of health problems are culminating in a brain disorder--a neuromuscular one, that is. I'm sure we'll be tripping the light fantastic on that topic in future episodes--with or without the use of our lower limbs which, as loyal viewers (should one or two exist) may remember came up in a dream I had a couple of years ago.
One of my theories is that dreams are, or frequently include, communications from our cells. In addition to their other methods, pain, stiffness, swelling, etc., perhaps they send messages through our cerebellum to end up as content in dreams, mixed, as it were with the thoughts and experiences of the day or days before we fall into the thought pool of sleep. In other words:
Zzzzzzzzzzzzzzzzzzzzzzzzzz
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