WHO are YOU? A Woman living with "The Chronick"

So...

I had one last request from my 12 page "WHO Are YOU?" entry in my diary. I told Serenity3-0 and That Southern Black Gal to pick anything from the 13 point list, and I MAY discuss it.

I was hoping that they would pick the easy safe stuff.

Serenity picked I am quietly compassionate.

Simple enough. I don't know why she asked about that one. We get into some DEEP discussions on a daily basis seems like. I do believe we have discussed such. And she knows me pretty well, the good (and the bad).

Odd, but pretty safe pick.

Sherri, aka Ms.Blackliterature.com chose I am God's beloved.

Again, simple enough. I like Ol' Sherri. (You alright with me, gal). She would choose that one. Nice safe pick.

But then, here comes That Southern Black Gal. She picked an entry that uh, I don't discuss in these parts.

Her comment: "I never knew about the chronic illness so I'll like to read about that. If you are up to sharing it."

Made.
Me.
Cringe.

I think I screamed inside when I read her comment.

"ARRGGGGGGGGGGGGHHHHHHH!"

*Ladylee hurls self out of window*

You see, at the House of LadyLee, we likes to keep it smurfy.

But Serenity3-0 requires me to do some nonsmurfy posts. If I don't, she starts sniping me with drive-by insults in the comment section. She seems to think I am a Poignant Oldgirl and have deeper things to talk about.

But that Southern Black Gal chose I am a woman living with a chronic illness.

*big HUGE alien break-dancing crickets*

I was kicking rocks after that request.

Hmm... Should I discuss this?

Hmm...

Of course. I like Southern Black Gal.

She and that doggone Serenity always trying to learn something.

Heck, it's my blog... might as well. And people who know me know what's up.

So, why not?

It's nothing I am ashamed of. I don't talk about it because it is NOT a crutch. I also think I don't talk about it because negroes get to tripping, start treating me like some fragile bird, start acting like they have to pull out calendars and mark off a time to come to my funeral.

NEWSFLASH: I'm coming to your funeral before you come to mine, honey.

Yeah, that's a nasty thing to say, but shoot, better think positive!

Let's be BOLD and post this personal journal entry up on the walls of the House of LadyLee.

This one right here is for one of my favorite bloggers, That Southern Black Gal.


I am a woman living with Lup.us.

That is such an ugly word. I don't care to even speak it. I don't know who would come up with such a word. I think it is from the french word for "wolf". I don't remember. It just sound a hot mess.

What I DO remember is the year 2002, sitting up on the examination table, awaiting the doctor's interpretation of my test results. When he said "Looks like you have lupu.s", I didn't know what to think.

My first thoughts were of people I had heard of who had died from it.

Back in the 90's, I saw a character on one of my favorite soap operas dying from it. She was standing at a window, talking, then she took her last breath. I remember thinking, man, whatever she had, that lu.pus thing, I don't want that!

A friend's sister had died from it. She ended up adopting her deceased sister's young son.

I even heard of others dying from it.

Three words came out of my mouth while sitting there on the examination table. And I said it calmly, like I was talking about the weather:

"Is it fatal?"

I already knew the answer. Just wanted to see what he had to say.

"No, it's not. You'll probably outlive us all."

Not the answer that I THOUGHT I would hear.

He said something else that shocked my socks off:

"You're in the right place. My wife is a specialist in that, autoimmune disease. She's the best in the southeast for lu.pus. I'll go talk to her. I want you to see her today."

I spoke the words of Miss Sophia that day.

"I know there is a God."

I was happy that day. There was an answer to why I had suddenly dropped 100 pounds and had no energy and hurled everything I tried to eat. There was a reason why every joint in my body hurt like hell. There was a reason I slept 23 hours a day.

I was happy... and very sick.

But I know what it's like to be knocking at death's door, the body shutting down, preparing to die. I know what it feels like to have to learn to walk again.

At the same time, I know what it feels like to be thankful, and even some 7-8 years after the the diagnosis, being able to take care of myself, being independent.

These days I am fine. But my Doctor has been on me.

I work too doggone much.

She asked me a very pointed question a few months ago:

"Is your life important or is that job more important?"

As we sat there staring at each other, we knew what the answer was:

My life.

I need to learn, if I am not feeling well, to be quick to pull back and get my rest. That is something I still struggle with. I have improved in this sticky point, but I can do MUCH better.

The workplace management is NOT sympathetic.

The job doesn't care about me.

Hell, the JOB don't even care about the JOB.

So what does that say?

Okay, Southern Black Gal.... that is all I wrote that day in my journal about that.

Man! I must've had a JACKED UP day at work that day. DANG. Why was I tripping at the end of that post?

I don't know. I go to the doctor every 4-6 weeks, and my doctor is usually asking me about the job while she pokes and squeezes my joints. That's all she wants to yack about: job, job, JOB!

So when I see her, I have to make sure that I have a FULL speech together about my job: how much time I have taken off, how many hours I work a day, have some things written out.

My job is the single worst point of stress in my life.

Stress causes my lu.pus to "flare" up, i.e., sudden worsening of symptoms VERY suddenly.

So she be on me like a hawk, hemming and hawwing, questioning me down. (She is my bootleg therapist, and happy to serve as such).

Yes we have had many an argument. I have bust out crying. She stares, unfazed by my tears, gives me tough talk. She always wins. And when I do what she says, I feel and do better.

It was hard to write about this in my journal. I don't think that much about it. I only write about it when I have to go to the doctor's office, and she and I discuss something interesting that day.

This disease is very hard to diagnose, as it is mistaken for so many other diseases. All I know is there is no cure. And it is brought out by some type of stress.

I have had it since the age of 24, but was diagnosed at age 32. I've met several women with it, who you would never know had it. We all have different symptoms, and have had some hospital stays.

My symptoms over the years are: severe anemia (which we seem to have straighten out at times, achy joints, pleuresy (on my left lung), and heart inflammation. I have rashes, but you can't see them because I am dark-skin. My sinuses aren't the best, as I have been known to get sinus infections, and my nose bleeds sometimes (not lately). I have bouts of insomnia. I have some cognitive issues, i.e., I have a terribly SHORT attention span, and I sometimes have a little trouble writing. I usually catch that quickly and solve it quickly.

I also have some alop.ecia, i.e., no hair growth (well, a little). I am taking a chemotherapy drug right now that is giving me a little male pattern baldness, and that REALLY irks me.

Now... if that's all I have to get "irked" about, well, I am doing REAL good.

When I get a cold, or the flu, it is hellacious. And scary. I was sick for a week of my Christmas vacation, and was VERY happy I didn't have to work. I must say, it was good to be able to not be in and out of the house... just to be able to rest, and get over my cold without a whole bunch of other symptoms coming out.

Somehow my doctor can spot all this BEFORE the onset of the actual cold or flu. (Technology is something else. Goodness).

I get a TON of bloodwork done every month. My blood is a bit jacked up. I look at my blood work results and it looks crazy. Man, there are components of the blood that they didn't even mention to us in school. I've only heard of white blood cells, red blood cells, plasma and platelets. There are a bunch of other components in blood. Shoot, I had to go look that stuff up. Who would've ever known?

Everything else looks pretty normal, though.

The best advice I've gotten about my condition was from a woman with the same thing. I remember looking her up and down, amazed at how healthy she looked. She said:

"Girl, you'll be alright.

You will work.

You will play.

You will live.

But it will knock you down. When your body tells you to slow down or you feel sick, you need to sit down somewhere.

People will think you are lying, but that's their problem, not yours."

Funny... I have passed this advice on to others. Because it is true.

I am still learning the lesson.

My biggest thing now, what I concentrate on more and more each day:

Learning to take better care of myself.

And I think that is key... I think that will make all the difference.

Really though.

My dearest Southern Black Gal... don't you ever make such a request like that again.

You hear me?

(Just kidding... ask whatever you like of me:)