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Lupus: My Story (LONG)

 
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supermodelsonya View Drop Down
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    Posted: Mar 04 2011 at 4:55am
Please don't quote...

The invitations to parties and barbecues stopped about a year ago. The only thing I could think about was my bed.

“I’m sorry Sonya, I love you but I’m not inviting you to anything else since you’re not going to show up.” I felt bad but I was too tired to be bothered after going to work all day. It didn’t add up to me....we did the same grueling job driving the buses in Chicago but she and many others still had time to have, dare I say it, a personal life.

For some years, I’ve struggled with aches and pains that could put a grown man down at times, but I dealt with it.

Last Spring, I found out I had an ulcer and was hospitalized for it. I suffered with pain and weight loss for a while until I started to get better. I began to eat everything in sight that summer and weighed 147 lbs. The most I’ve ever weighed in my life.

Sure I was getting more attention on the street, but I burst open my uniform pants. Funny but not cute.

Come November 2010, I began to lose weight very rapidly and the aches and pains got worse. I saw a doctor and she was very concerned when I tipped the scales at 130 lbs.

She decided to run a battery of tests as I lost 2-3 lbs. in a week without even trying.

February 1st, I got the call. I tested positive for lupus. After moments of shock and repeating to the nurse, “ I have lupus?” and she ignored me, I immediately told a friend.

“Well what is it?” He asked.
“I don’ know.” Google can be your best friend.

What is systemic lupus erythematosus, or lupus?
Lupus is an autoimmune disease, which means that the body's natural defense system (immune system) attacks its own tissues instead of attacking foreign substances like bacteria and viruses. This causes inflammation. Inflammation causes swelling, pain, and tissue damage throughout the body. If you develop severe lupus, you may have problems with your kidneys, heart, lungs, nervous system, or blood cells. Lupus is the common name for systemic lupus erythematosus, also called SLE.

....said Google.

There is no single test that can diagnose you with lupus so I had to wait a whole month....in agony for a specialist appointment with a Rheumatologist. I learned that it can take months or years to get a diagnosis.
March 3rd was my appointment. After looking at my bloodwork and hearing my symptoms he didn’t hesitate to diagnose me.

It is very scary but the outlook for people living with lupus today is much greater than it has been in past years.
I’m taking lots of medications now but it’s good. I’m happy that I know and I don’t have to live in pain alone.

Symptoms
Fatigue
Fever
Weight loss or gain
Joint pain, stiffness and swelling
Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
Skin lesions that appear or worsen with sun exposure
Mouth sores
Hair loss (alopecia)
Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
Shortness of breath
Chest pain
Dry eyes
Easy bruising
Anxiety
Depression
Memory loss

I decided to write this because when I told other people of my condition, the first reaction was just like mine. “What is it?”

That’s alarming to me because this disease affects women more than men, and women of color are 4-5 times more likely to be diagnosed with it than Caucasian women. It seems like not many people knows what it is and what it can do.

Just thought I’d share my story for anyone else out there that may be dealing with it or knows someone who is. 


Edited by supermodelsonya - Mar 04 2011 at 5:00am
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HoneyS7 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HoneyS7 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2011 at 5:16am
Thanks much for sharing this, SMS. I have a cousin in her 30's who struggles with this, and her life changed when she received a proper diagnosis. Doctors ignored her because she was so young, but she does, indeed, have it. Wishing you joy, peace and strength Hug
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Post Options Post Options   Thanks (0) Thanks(0)   Quote [ Blessed ] Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2011 at 5:51am
Thank You for sharing!
Wishing you the best of luck through this, God Bless.
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supermodelsonya View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote supermodelsonya Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2011 at 7:22am
Originally posted by HoneyS7 HoneyS7 wrote:

Thanks much for sharing this, SMS. I have a cousin in her 30's who struggles with this, and her life changed when she received a proper diagnosis. Doctors ignored her because she was so young, but she does, indeed, have it. Wishing you joy, peace and strength Hug
HONEY!!!!!! And Blessed
thank you so much!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Star007 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2011 at 2:23pm

Sonya,

Thank you SO much for sharing this with us.  I have been enlightened by your post because all I know about Lupus is that it is a disease but I didnt know anymore details than that.  One of my mom's closest friends (they've been friends since the 70's!) has Lupus and I didnt know all the effects it had on the body.
 
HugHeart
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supermodelsonya View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote supermodelsonya Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2011 at 8:29pm
Thanks Star007!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Drea78 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2011 at 5:09am
Please take good acre of your self and take your meds...
I have a23yr old cousin who was diagnosed in July she was in denial and didn't take her meds.  She is in the hospital as we speak recovering from surgery for fluid around her heart.  Very serious issue which she now has to deal with along with the lupus.  So please do your research and keep a great relationship with your doc.  Keep a journal of all you eat and do dont take any fleer ups for granted and no questions are to stupid to ask.

Please take good care of yourself may you be blessed stay positive and stress free.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote supermodelsonya Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2011 at 8:20am
Thanks Drea78!

What were her symptoms with the fluid around her heart?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dallasgal Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2011 at 6:02pm
Thank you so much for sharing! I have a good friend that I grew up with that has Lupus but about a year ago she stopped taking our calls. She no longer comes to events and now we have lost contact with her. I hate that she has isolated herself because I want to be there for her. I will continue to pray for her from afar in hopes that she will open up to us soon. You are in my prayers Sonya and I know that God will see you through this Hug
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Post Options Post Options   Thanks (0) Thanks(0)   Quote supermodelsonya Quote  Post ReplyReply Direct Link To This Post Posted: Mar 06 2011 at 7:31pm
Originally posted by dallasgal dallasgal wrote:

Thank you so much for sharing! I have a good friend that I grew up with that has Lupus but about a year ago she stopped taking our calls. She no longer comes to events and now we have lost contact with her. I hate that she has isolated herself because I want to be there for her. I will continue to pray for her from afar in hopes that she will open up to us soon. You are in my prayers Sonya and I know that God will see you through this Hug


Thanks Dallasgal...I can definitely relate to not feeling up to doing anything. thanks for the prayers!
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