One thing that I really don't talk about in the House of LadyLee...
My lupus issues.
Because I don't wail and whine about my illness to people. I don't use it as a crutch.
I was diagnosed 7 years ago. (I have had it, from the symptoms, some 15 years, just didn't know it.) I only spoke about it on blog after a request from one of my favorite bloggers, That Southern Black Gal. (click here for that post). I'm glad she requested it, because it was a good thing for me to post on it.
I know several women with this chronic disease, and we all live pretty normal lives for the most part. We really don't even discuss it amongst each other. A coworker and I tend to email interesting articles to each other from time to time, and we check on each other and talk about medications, but that's about it...
But I go to the doctor a lot, every 4 to 6 weeks. I'm always getting a bunch of tests, giving many tubes of blood, all kinds of craziness.
I ask my Doctor from time to time, when she wants to do certain tests...
"Why do we have to keep doing this, Dr.Bhaji?"
"I'm just being proactive!" she says in her high shirll voice.
*LadyLee kicks the hard eyeroll*
Yesterday I had a heart test, called an echocardiagram. (I have no idea if I am spelling that right).
I have pleurisy, and a bit of continuous heart inflammation since being diagnosed. The only real effect it has is that I have a little pain along my ribcage on my left side around my heart when I take very deep breaths.
This doesn't bother me. I can go walk a few miles on the track without hyperventilating or anything wierd.
So she scheduled this "Echo" test.
"But I feel alright!" I said.
"You've never had the test. And I just want to be proactive, LadyLee," she said as she fills out my prescriptions.
So I had that yesterday. Very interesting. It seems to be a sonogram/ultrasound for the heart. I didn't discuss the test with the technician (I was a bit perturbed about laying up on a table with my chest exposed, lol).
But what was interesting is that I could hear the sound of my blood pumping in my heart over loud speakers.
Swoooooosh, swooooosh, swoooooosh.
Very loud, very pressure driven. Man, it sounded like something out of the Alien movies, lol.
(If you've ever seen the movie Contact, it sounded exactly like the signals the aliens were sending from outer space)
And it was very daunting. The heart pumping like that is a very complicated process...
I'll probably think about that when I get in a tizzy about mundane issues of life.
Gives a WHOLE new meaning to me thanking God for the blood running warm through my veins.
I literally know what that means now.
Talking to my Doctor about it later, she said there were reasons for that test: to measure the size of the heart, to check for leaking valves, and to check for fluid around the heart.
I sat quietly and listened. Wanted to wail "But I feel alright!", but I didn't.
I understood that she was just trying to be proactive.
I've had other tests, like the bone density test. It is interesting to see my whole skeleton on a computer screen. I upset the technician once, when I was standing behind her, looking at the results screen, yelling...
"Look at that! I got bones, man! I got bones!!!!"
LOL. That chick was having a bad day. Thought I was gonna catch a smackdown.
Then there was a kidney ultrasound test I once had. It is pretty much the same as an ultrasound. My doctor wanted to know the size of my kidneys.
I remember the technician squinting hard at the computer screen.
And I remember thinking "Please don't let this woman say she see a baby in there."
LOL!!! (That was what they told my mother when they were looking for the size of a tumor they thought she had. Said tumor was my little brother. LOL!!!)
But one test that I've always hated, one I have to do every 2 to 3 months, is a test that requires urine collection.
I am NOT talking the simple "pee in a cup" at the doctor's office test. Who cares about that? That is simple enough to do.
I am talking about the "24 hour urine collection".
Collecting ALL of your urine over a 24 hours.
(And I don't know what my issues were that day. I collected over 3 liters. Ugh.)
When my doctor wanted me to do this for the first time, some 6 years ago, I was like
"WHAT? You have GOT to be kidding me!! Stop playing!"
"I do this because I like to catch problems early" she said.
The reason for this is that a lot of lupus patients have higher levels of protein leaking out of their kidneys. Normal levels are about 100 mg. My range has been around 250 mg. I had something as high as 700 mg one time. My urine is foaming (a sign of high protein count, and possible kidney disease). My doctor adjusts my medicine accordingly to control this.
Anyway, I can't stand this process, and have wailed and whined about it.
Dr. Bhaji is use to me, after all these years. She ignores my whining.
"I'm being proactive, Miss LadyLee."
Over the years, the nurses have gotten a kick out of my disdain for the bright orange bottle. They would put my name on it, and hand it to me before I leave the doctor's office.
"Uh, check it out, homegirl" I say, as I stare at the bright orange bottle in my hand. "Ya'll need to give me a paper bag for this. I don't want to walk through the waiting room with this."
I look around the room where I've just given several tubes of blood. "I'm sure ya'll got some bags around here."
"Nope. Take it like that."
To make things worse, one nurse in particular would grab my bottle from me and draw a BIG smiley face on the front. And then hand it back to me.
*LadyLee frowns REALLY hard*
So I would have to carry my bottle with the big smiley face through the waiting room. Ugh.
These days I don't care. I just do it. I don't know some of those people. WHATEVER.
Besides, my doctor is trying to be proactive.
At home, the bottle is not an issue, but I make it one.
Not only do I have to collect urine for 24 hours, I have to keep it very cold.
So I try to pick fights with Kentucky over this. I was particularly evil about this last quarter, in June.
"Kentucky, I'm putting this bottle in the fridge. I don't feel like getting up in the middle of the night loading my bucket with ice. You better not touch it, you hear me?!!"
"Lisa," she shot back. "You've been doing that for years. I know what it is, and I'm not gonna touch it. Just put it in there."
I left her alone. Kentucky is usually extremely docile, but I got the feeling that she didn't want to hear my mouth that day.
(Kentucky is undercover crazy. You have to watch the quiet ones).
Anyway, I turned in my bottle for last quarter 3 weeks ago.
I got a good result yesterday: a protein count of 159 mg.
My doctor was VERY happy about this.
My doctor and I talked about it.
And it seems to be largely due to my going vegetarian...
"Dr. Bhaji," I said through my hard Celie smile. "I'm being proactive!!!
To be continued.