Thursday, January 08, 2009

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:)

19 comments:

  1. I am so glad she did because, I am certain that someone, somewhere needed to get that message. Let me just say that, I love, LOVE your doctor and coming from me(a nurse) speaks volumes because, I usually do not. Sounds like you hit pay dirt with that one.

    I have two people who are really close to me who also have lup.us. Like you, they have their good days and bad days but, keep on keeping on. One of them is 72 years old and she can't keep still either..lol

    That doctor was right, you'll probably outlive us all.

    Great post and thank you for sharing.

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  2. Thank you so much for sharing that with us.

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  3. wow...i had no idea. i knew about the anemia but didn't know the extent of your illness, so i really appreciate you talking about it.

    i know you don't want people worrying about you, but my first thought was "lee needs to stop working so damn much...hmpph!"

    glad to know you and your doctor are really on top of things.

    that southern girl...how can you not luv her huh?! lol

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  4. I forgot all about this. I learned a couple of things. I need to ask my mom about some of these symptoms and see if she's been checked for lupus. She is severe anemia (has to take iron pills). Couple weeks ago, she complained about her joints aching.

    My friend's mom has lupus and she's doing just fine.

    Thank you Lee for sharing your story.

    Because I made such a request, please accept this Lil Wayne cd.

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  5. Diva, you got to love! HA! And that was my first thought too.

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  6. How nice of you to share this with us. I love your positive attitude. And, you doctor sounds great!

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  7. Hmph... I thought I hit a homerun with God's beloved. ;-}

    Your job is the biggest stress in your life??

    You are right. Your job does not care about you. If you were to die tomorrow, they'll have a requisition for your position ready before someone can clear off your desk. (Ooops... do I sound bitter? Sorry)

    You have a gift and we are blessed to share a portion of your journey as you hone it. Your J.O.B is your number one stress?? Well, there is always a job at the post office. ;-)

    Miss Jordan Anne is waiting for the day she's able to see Dr Ladylee's name on her bookshelf. Your job is your #1 stress?? With the gift that you have??? Hmm... you must know what I'm thinking.

    Happy New Year!

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  8. wow, thanks for sharing this. no one would have ever known cause you seem so strong and you just dont talk about negative things.

    i watched my moms only best friend deterioate from this disease and die. she had two small children. i felt so bad for her and those kids.

    i am happy that you are doing well. i hope that you continue to take care of yourself and stop working so hard.

    and dont be fussing at Southern Gal, and dont go hurl yourself out of a window,lol

    have a great day hon.

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  9. @Ali... My doctor is very good. She will actually sit down and talk to me, and you know how rare that is. I do believe she has cussed me out in her indian language a time or two. LOL. She is waaaaay too thorough (that should NOT be a complaint, should it?), with all of her, I want you to do this, let's check that, blah, blah, blah.

    But I read an article a couple of years ago that said the survival rate of black women is an issha because we don't listen to our doctors.

    That stung me right there. I talked to her on my next visit, told her that I will make it a goal to do what she needs me to do. (She looked at me with a raised eyebrow, lol).

    So I am VERY glad to have her.

    @That Original Oldgirl Chele...You're welcome, hon. Although I think you knew a smidgen of this. Glad to share. Never know who may need to read it.

    @Opinionated Diva... Yes, my dear, I work too much. I have improved over the past 6 months, with a little B.S. here and there. 'Tis the reason my boss is at odds with me right now and won't really talk to me. She is use to getting 10-12 hours out of me. As you like to say "I ain't able!" I've had to tell chick that I ain't working but 8 hours a day. She can kill this 12 hour noise.

    So I guess she don't like that. She can go sit on a tack, man.

    I just love that Southern Black Girl... She is the best Lil' Wayne jock rider in the world.

    LOL!!

    @That Southern Black Girl...

    *Lee takes the Lil' Wayne CD and breaks it into a million pieces with a hammer. Lee throws it out the window*


    Lee watches That Southern Black Gal wail, holler and screech*

    LOL!!!

    Girl, tell your Mama to ask for a full immuno profile. That would catch this. I think that is the biggest problem. I hit up 3 doctors before I was diagnosed. One of them jokers kept giving me AIDS tests. HUMPH. I had to turn him loose.

    Yeah, I work too much. But ya'll will be proud. I've been sticking bone close to 40-45 hours a week these days. I am also working on getting at least 7-8 hours of sleep a night (usually it is 4-5 hours). When I do these things (which my doc has been hounding me DOWN about), I feel GREAT!!!

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  10. First things first...

    "*big HUGE alien break-dancing crickets*"

    BWAHAHAHAHA! You are out of control.

    Thank you for sharing that. Not only because it was incredibly brave of you, but because many of your symptoms sound alot like some of the things that a friend of mine has been dealing with, and I hope this will maybe point her in the right direction of a diagnosis.

    I love your doc. If I could find one like her, maybe I wouldn't dread going so much, lol.

    With all that being said, girl if you don't stop working so much you better!!! **said in my best native Georgia accent, complete with my grandmother's inflection**

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  11. one of my old coworkers has lupus. i'd never heard of it until i met her. she still leads a very full life. kinda like you lol

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  12. @Aretha... My doctor is the bomb. She be tripping, but she actually CARES. Can't say that for many doctors.

    @Ms.Blackliterature.com...

    DANG MAMA!! LOL. Goodness... I can see you're gonna give Miss Jordan Anne a HARD time, because you sound like somebody's Mama!

    LOL!

    You know... one of my coworkers died in a car accident a few years go. Real good guy, and I must say, that I had one of the most important convos of my life with him a day before he died (He was killed in a crash on the way to work the next morning).

    Anyway, we all worked the day of his funeral... went to the his memorial service at 5 in the afternoon.

    Then came back to work the next day and kept it moving.

    I learned much from that. And all I know that you don't sound bitter. You sound RIGHT and REAL.

    I would give anything to have a job doing something I love. I like my job, but management is the devil and severely retarded.

    And I can't work at the post office. They don't pay enough money, Mama! LOL!

    And hopefully Little Miss Jordan Anne will have my book(s) on her bookshelf one day:)

    Thanks for the TOUGH TALK. LOL!!

    @Dreamy... What's up Mami? No more Red Bull and Vodka for YOU. LOL! (I'm just playing; hope you feel better;)

    I know about the deterioration. GEE-ZUS. I had to have a couple of blood tranfusions, a WHOLE lot of IV stuff. UGH.

    But the issue is that you have it for YEARS and it is quiet, then some mess touches it off. It's like throwing a lit match into a dry forest. Not much is understood about it.

    I don't want to deal with THAT again. So I will do the best to take care of myself, Mami!

    @THE infamous LA...

    You like them their crickets, don't you? LOL! Man, I wanted to backhand Southern Black Gal!

    There was a list of 13 things, and there were 4 on that list that I did NOT want to fool with. Let's just say that she picked the one that don't disturb me as much... but DANG!

    I'ma have to get Southern Black Gal back for that one. (No more Lil' Wayne jock riding for her! That'll teach her!)

    Tell your friend to go get checked out. All the autoimmune tests. And if folks tripping, go to another doctor. I had VERY clear symptoms for 6 years before I was diagnosed. 6 YEARS. No one should wait until or if things get dire.

    @Patrice... That is something that always trip me out. I meet peeps that keep it a secret, and I understand why. But they lead a normal life.

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  13. **sticking tongue out then take off running**

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  14. *LadyLee squinting hard at that Lil' Wayne jock rider, Southern Black Gal*

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  15. What the?

    Lost for words and that does not happen in this camp often...

    Now you're azz is on my "s-hero" list--you were on the honorable mention list but you moved right on up -- and not even Stedman's millionaire mistress and Gayle's BFF can make my list.

    I won't mess with you much now--but I'll be on your behind about that J-O-B -- good money or not

    HMPH!

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  16. We all know that it took a lot of courage for you to write this...

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  17. Thanks for sharing Lee. Your doctor sounds like good people.

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  18. Hey Glad to see you all smurfy!
    Take care of yourself or I'll send the clowns in, you know how much I hate clowns!
    BE Well!
    Jaycee

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  19. Damn. I'm going through my own personal trials answering the self assessment questions at my blog. But your candid sharing here takes the cake, and I thank you for it SO MUCH.

    ====@====
    Hawa,
    Author of Fackin Truth Blog and Cleanse Master Remix

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Slap the *crickets* out the way, kindly step up to the mike, and SAY something!!