Sunday, November 29, 2009

Coming Out of the Closet...

One of the users of the Sickle Cell forum posted this awesome testimonial about her sickle cell epiphany that I'm allowed to share with everyone. Since my epiphany occurred when I met another sickle cell warrior who was not ashamed about her disease, it's so heartening when other people get the same attitude.

Without further ado, meet Kim.
Lately I've been talking about SC a lot. More than I ever have in my entire life. It is the one thing that I have always avoided and hated talking about.

Back in September I celebrated my 40th birthday. Words alone can't adequately express just how THANKFUL I am to have made it to the BIG 4-0!

According to my doctors, I have long out-lived my life expectancy; however, the Father said otherwise. I’m still here. Turning 40 had a major impact on me in several ways. First, it compelled me to express my gratitude by finding a way to reach get involved in the SC community.

On October 17th I attended my first ever SC event. It was a Family Education event. At that event I had the opportunity to meet and speak to a group of adolescents, ages 13-18, about SC, how it affected my life over the years and and how I've coped with the disease up until present time. It was comforting for them in some way to know that I was 40, relatively healthy and well and that I was stable and had been on the same job for nine years...that I was normal (so to speak). What's more, I was able to share with them the fact it had been more than five years since my last hospitalization!

Unlike their peers, physicians and other health care professionals, I knew not only the ins-and-outs of the disease, I most importantly knew how they felt. It was a very rewarding experience for me.

At that event, I had the honor of meeting a very special young lady by the name of Aaron Washington who has been cured of Sickle Cell Disease through bone marrow transplant. Her mother, Joyce Washington, who is now a dear my friend, is co-founder of the FACE Foundation, Inc.(Family Advocacy Coalition for the Empowerment of the Sickle Cell Community). I have been in constant contact with her and am now offering my talent and time to doing all that I can to aid and assist in bringing about awareness, forming alliances, raising funding for research and support services while serving the SC community.

I have much respect and admiration for Joyce. She is more passionate about the cause than anyone I've ever known or met, myself included. I asked Joyce why she works so tirelessly for SC...why she still does what she does...seeing as her child no longer has SC. She said to me, "How dare I walk away and not do all I can? He saved my baby! I have to do this. I have to do my part to make sure that somebody elses baby can be saved. I can't walk away when there's so much to do. How dare I not thank Him for saving my baby?" Her passion is inspires me!

Turning 40 also forced me to "come out of the closet", so to speak. I never expected to see 40, so despite things working out for me and my life coming together nicely, I really didn't plan for 40. I knew that my turning 40 had more to do with God's purpose for my life than it did with me. Wretch that I am, I didn't deserve 40. I knew this, so I asked God to show me the path that would lead me to my better self. I promised the Father that if He opened the door that I wouldn't be afraid to walk through it. I asked Him to show me how to help someone else cope so that they could not only see 40, but also plan for a life well-lived. I asked Him to take my give me the courage to speak up and out about sickle cell anemia.

Prior to my 40th birthday, I hated talking about having SC. Wouldn't do one understood anyway and I despise pity! Talking about it just wasn't something that I wasn't an option. If I wasn't sick, I didn't even acknowledge the fact that SC existed. For the most part, I've always looked healthy and but for those who knew me well, no one really knew that I had SC. I have always struggled with having SC and not being "normal". ALWAYS.

There were times when I'd get sick and not let anyone outside of my family much so, that I actually would rather push people away and out of my life instead of fessin' up to having this painful and debilitating disease. Sad, but true.

That time has come and gone. I'm Coming Out!
With 40 came a certain freedom and acceptance that I don't quite know how to explain. I no longer worry about feeling different. I am different, but I really like who I have become. I have had a good life in spite of SC. Yes, it has been quite difficult at times, but I'm still here. Yes, I have had crisis after crisis over the years...some so severe that I actually prayed for and welcomed death...but I am still here! It is not because of my doing but because the Father has made it so.

Yes, now is the time to own this new found freedom. I'm Coming Out! I am no longer ashamed of having SC because it certainly doesn't have me! I am coming out of the closet because I need to be a voice for those who likewise suffer from SC but have yet to find their voice. I'm Coming Out to lend an ear to those who need someone to listen who actually knows what its like to deal with SC. I'm Coming Out to be an advocate for the support of funding for research and support programs for those living with SC. I'm Coming Out because I have a story to tell that God kept me here for 40 years to tell!

Yes, indeed! I'm Coming Out!.

Its not all good, but it certainly ain't all bad either!

Blessings & Peace to Y'all~ K.D.

Saturday, November 21, 2009

Sickle Cell & Pity

Here is a great question at the Sickle Cell Ning Forum.
Why is that when you go into a crisis people tend to give you weird looks and have pity for you? We don't need pity but support...

I think people offer pity what they do not understand something. Like when a loved one dies, friends go to the family to offer condolences, but really...what do condolences mean? Condolences won't bring the person back or ease the pain in the heart. But condolences send the message that I do care that you are hurting and that your heart is in pain. Conversely, to me, I don't see pity as a bad thing, I see it as people telling me that they do care that I am in pain. Plain and simple.

Pain is something that all humans can relate to because everyone has had pain one time or another in their lives. Sure, ours might be more all encompassing, and overwhelming, but pain is a shared human experience.

When people tell me they have diabetes, I don't give them looks of pity. However, when someone tells me they have an incurable cancer ---I pity that. It comes from my interconectivity as a human and my acknowledgment of human frailty. I understand that they are going through a struggle, and I empathize  with them. When I was younger, I used to hide from the pity and kept my sickle cell a secret because I didn't want pity. However, this just made it harder to deal with, since noone knew what I was going through, and when I needed support---I found it difficult to get any.

The kind of pity I hate the most is self-pity. That is the one that grates on my nerves. I hate to wallow in a 'woe is me' moment. Sure, I have sickle cell..but there are other people in the world going through much worse and are still smiling. I"m alive, I'm surrounded by people that love me, and I'm blessed to have survived so much. 

I feel that with more public knowledge and education, we will be able to have sickle cell viewed as a disease and not as a death sentence.  Perhaps when more people understand sickle cell, they realize that it's a condition with ups and downs, and when we are down, we do need more support. But at the center of it, we are just human, like everyone else.

So I guess on some level, pity is a weird form of compassion. I would rather have pity than have someone yell at me and call me a drug addict. I'm just saying...pity is the lesser of two evils. ;)

Friday, November 6, 2009

Sickle Cell vs the Flu and Cold

Hey everyone, thanks to all the people who have joined the SCW fan page on Facebook. It's another great way to connect.

Here is a great article on the difference between a regular cold and the flu. Since it's Flu Season, and sickle cell warriors are more susceptible to developing greater complications because of a flu, this is valuable information. No one wants to get acute chest syndrome..but something like the cold or flu can lead us down that slippery slope.

Please everyone...get your flu shot! I already got mine, and it saved me from catching whatever it was the hubby brought home last week. Wash your hands as often as possible, and carry hand sanitizer with you if possible. Remember, an ounce of prevention is worth a pound of cure! You can read the full, complete article HERE.

Sometimes, usually mild
Usual; high (100-102 F; occasionally higher, especially in young children); lasts 3 to 4 days
General Aches, Pains
Usual; often severe
Fatigue, Weakness
Usual; can last 2 to 3 weeks
Extreme Exhaustion
Usual; at the beginning of the illness
Stuffy Nose
Sore Throat
Chest Discomfort, Cough
Mild to moderate; hacking cough
Common; can become severe
Sinus congestion; middle ear infection
Sinusitis, bronchitis, ear infection, pneumonia; can be life-threatening
Wash your hands often; avoid close contact with anyone with a cold
Wash your hands often; avoid close contact with anyone who has flu symptoms; for seasonal flu, get the annual flu shot; ask your doctor about antiviral medicine for either seasonal or swine flu.
Antihistamines; decongestants; anti-inflammatory medicines
Antihistamines, decongestants, analgesics (ibuprofen, acetaminophen); antiviral drugs within the first 48 hours of seasonal or swine flu symptoms; call your doctor for more information about treatment.

Tuesday, November 3, 2009

More Info on the Sickle Cell Documentary

Addendum: Anyone interested in sharing their story can followup on this. Shooting will be done in LA, and you will be flown in for the feature interview. Hope this helps!

If interested, send an email to

We are producing a feature length documentary on Sickle Cell Disease and those who live with it. Currently in production, the film's interviews will start in the spring of 2010. We are seeking encourage individuals who are sufferers of Sickle Cell who have remarkable stories of triumph over this disease, lost a loved one to complications, or are parents of children with SCD. We will interview them allowing them to share their stories on film. We are also seeking video blogs of suffers going through a crises. Preferrably filmed inside the hospital. Those submitting their video blogs must reply back stating they wish to do so for further information on the submission process. Those wishing to be interviewed in Los Angeles with the Producer/Director must reply back with their full legal name and contact information so one of our producers may contact you
with further information and a brief phone interview.

Thank you for your time and participation!

Production Team
Project Hemoglobin S 2010