National Sarcoidoisis Awareness Day

Happy National Sarcoidosis Awareness Day!  While it’s definitely not a happy occasion, I am happy to be able to do whatever I can to bring awareness to the disease.  There are so many who still don’t know about this disease, so I’ll take a moment to give you a little education.

Sarcoidosis (Sar-Coy-Do-Sis) is an autoimmune disease that causes inflammation.  It can affect any organ in the body, though it is more likely to affect other organs rather than others—like the lungs.  It primarily appears as a respiratory disease.  The disease is more common in African-Americans and women.  Sarcoidosis typically appears during the ages of 20 -40, however, there are now cases of young children being diagnosed. Symptoms can include any of the following:

Lungs:

·      Chest pain (most often behind your breast bone)

• Dry cough
• Shortness of breath

General discomfort or uneasiness often occur:

• Fatigue (one of the most common symptoms in children)
• Fever
• Joint achiness or pain (arthralgia)
• Overall feeling of discomfort, illness, or lack of well-being
• Weight loss (one of the most common symptoms in children)

Skin symptoms:

• Hair loss
• Raised, red, firm skin sores (erythema nodosum), almost always on the front part of the lower legs
• Rash
• Scars that become raised or inflamed

Nervous system symptoms may include:

• Headache
• Seizures
• Weakness on one side of the face

Eye symptoms include:

• Burning
• Discharge from the eye
• Dry eyes
• Itching
•  

The cause of Sarcoidosis is unknown and it is very hard to diagnose, as it mimics several other diseases.  And what’s worse, there is no known cure.  Patients are usually treated with corticosteroids like prednisone or immune suppressors like methotrexate or humira.  Now can you see why awareness is soooo important?!

I was about 6 years old when my dad was diagnosed with Sarcoidosis.  At the time I really didn’t know what was going on.  I knew he was sick and I knew he was scared because I remember hearing him cry after he was given an initial diagnosis of cancer (told you it’s hard to diagnose).  I knew something was wrong, but I didn’t know what to do because I was a kid.  My dad was my hero and superman.  I looked to him for comfort and support, how was I supposed to help him?  At the time of his diagnosis, the medical community knew even less than they know today about the disease.  His doctor basically told him, “Well if all you have is a little short-windedness, just go on and live your life.”   We considered him one of the lucky ones because he was able to do just that for quite a while.  It was later in his life (around 40) when the disease took its toll on him.  After much inflammation, he operated with the capacity of only one lung, the prolong use of prednisone to treat his Sarcoidosis induced diabetes, and the disease moved on from his lungs to his skin.  By 2004, the disease and the medication, which was supposed to help him, began to ravage his body and that’s when he began to get sick.  He was repeatedly hospitalized for the next four years.  In 2008, after switching from prednisone to Humira, he contracted pneumonia and, as many of you know, after 3 weeks in the hospital, he lost his battle and passed away.

Now I didn’t give you that background information to depress you, but to inform you.  I just gave you a brief synopsis of my dad’s health problems, but I didn’t share with you how afraid I was during that time.  It was so nerve wracking to watch my father go into the hospital time and time again.  Like I told you, he was my Super Man.  Superman isn’t supposed to be sick! And while I was 30, old enough to recognize that my dad was a mere mortal, he remained otherworldly to me.  And to watch my “Big, Black Man” go from being strong and in charge to a bed-ridden, near death patient was heart breaking.  By the middle of week 2, I couldn’t’ even go into his room anymore and see him because it hurt too much to see him in that state.  And that’s the thing about Sarcoidosis (and any disease for that matter); it doesn’t just affect the sufferer.  It affects the entire collection of people around them.  Not only does the sufferer have to deal with the effects of the disease on their body, their family, friends, co-workers, neighbors, pets, and anybody around them who cares, has to deal with it and what it means not only for the sufferer, but for them as well. 

That is why awareness is key! Awareness allows for provisions to be made for sufferers and family members alike because awareness takes them all into consideration. Awareness prompts the medical community to recognize the need to find out more so that they can diagnose and treat the disease better, which will put them closer to a cure.  A cure that is much needed and coveted not only by this here Daughter of Sarcoidosis, but sufferers and family members across the world.  

Women, Beautiful Women

“A woman has to live her life, or live to repent not having lived it.”
― D.H. Lawrence, Lady Chatterley's Lover

I had a most wonderful weekend in Norfolk, VA.  On March 31^st, I gave a keynote for a Women’sWellness Conference held by a wonderful company, ARDX.  I was actually asked to participate last August after speaking at the Today’s Black Women Expo sponsored by State Farm.  A group of women happened to be in attendance, and among those women were one of the coordinators for the event.  She was visiting a friend in Chicago and they were actually on their way out when someone yelled that Bernie Mac’s family was in the room, so they ventured on in.  Boy am I glad that they did.  Not only did she provide me with a wonderful opportunity to speak and network, but over the course of the 7 months that we’ve been in contact, she’s also become a surprising friend.

Women are such beautiful, extraordinary, and dare I say, strange creatures.  Nations rise and fall because of women.  Kings have reined wars of terror because of women.  Women have nurtured societies, and when a woman is in need, no other can comfort her like her sister friend--a woman.  But for some reason, while we women are so good to everyone else--building our men and children, feeding and clothing our children, helping our girls, being everything that everyone else needs us to be--we fail to be good to our own selves.  And with all this that we do, we still have the nerve to doubt ourselves, and feel as if we are not enough.  We manage to make ourselves feel and believe that we are not good enough, not doing enough, and that we may never be enough.  Oh you think I’mwrong?  You don’t wanna admit your defeat?  Fine, I’ll just talk about myself.   . .

So OK . . . I’ll just be honest and admit it.  I still feel like an insecure adolescent.  I may be 34 years old with both a B.S.and an M.A.  I may have been married (and now divorced).  NowI’m even a proud mommy, but deep down, I still feel like that shy, fearful 12year-old girl trying to be popular and figure out what the hell I want to be when I grow up.  I still have a habit of walking into a room and comparing myself with all the other women there.  I still think about my future and what I’m going to do with and in it.  I still have moments of extreme self-doubt and wonder if I’m truly capable of doing all the things that others tell me I can do.  And dare I say this, but I still wonder if I will ever find a good man to love me for me—not for who he wants me to be,but for who I actually am. There.  I’ve said it.  Whew! That was a mouthful!  I figure why not just be honest instead of trying to pretend that I’ve got it all together.  Because to be quite honest, each year I live, it is revealed to me just how much I don’t have together. 

The event was so fitting because it took place on the last day of Women’s History Month, AND because the theme for was Fun, Fit, & Fabulous.  I actually feel like I am in a place where I can talk about being those things without being a fraud.  I feel like I am coming into myself.  For the first time in my life, I think I’m starting to get a handle on myself.  At first I was disappointed that it’s taken me so long to get to this point.  But now I’mrealizing it’s better late than never, and everything in my life is something that happened FOR me to prepare me for this moment.  And I don’t care what anybody says cause I’m still young.  Now I’m not going to say that crazy Jay-Z nonsense about 30 is the new 20 (or some junk like it) becauselet’s just be real.  30 is not the new 20.  30 is what it was and what it will always be . . . 30.  And you know what?  There is absolutely nothing wrong with that.

I believe that we are all so much more alike than we are different.  And once we realize that, we can stop looking to define ourselves based on the comparisons we make between one another.  Once we accept ourselves for the beautiful women we are, we can begin to invite other beautiful people into our lives who will accept and appreciate our beauty.  That’s why it’s so important that we share our stories with one another.  So many women shared with me how my story touched their lives, but that wasn’t where it ended.  I was touched by their stories as well.  I met so many wonderful and beautiful women during this event. I met an impeccably talented young 10^th grader who has already written and published her very first book.  I met a brave woman, who after turning 30, decided she wanted to fulfill her dream of becoming a mother (and not wait on a man because she was and still is happily single), and went through IV fertilization all by herself and is now the proud momma of a handsome little man.  I met a woman who admitted that she had been a terrible mother who did horrible things to her children.  She feared she would never be forgiven by her daughter, but had just recently spoken to her, and did in fact receive the forgiveness she so desperately wanted. Now she’s committed to walking a different life path and helping others. I met a special woman who has endured an amazingly troubled life marked with all kinds of abuse, yet she still managed to have a genuine and joy-filled smile on her face as she served the women in attendance.  Do you see what I’m talking about?!  Women are beautiful! You are beautiful! Stop feeling ashamed for what you did/didn’t do,what you don’t have, what you think you could have done better, and most of all what you look like! Your beauty does not lie in the size of your clothes or the length/texture of your hair.  Your beauty lies within you and your story. Women are better than Timex watches, we take lickings, beatings, bruisings, crashings (and sometimes by our own hands), yet we keep on a-tickingand a-tocking, and a-rocking, and . . . well now it’s just getting good to me : ) So I’lljust end now.  You are beautiful.Now isn’t it about time that you know it?! Go look in the mirror and tell yourself how beautiful you are. And when you’re done with that, make sure you tell another beautiful woman just how beautiful she is.  Let’s start a trend that goes on to become commonplace, and not just some trend.