Day 5 At Sickle Cell Camp

One day removed from being dismissed from the hospital is a time for rest and re-charging the batteries. After many tests to see if my crisis was caused by heart related issues, it was concluded that I was sickling in my sternum...yet it didn't present as pain...hm. Oh well, I guess I still remain a medical mystery. Aren't all Sickle patients medical mysteries? We remain that because our disease is not a glamourous disease. Besides, what Doctors or Hospitals want to care for the Sickle Cell population? Hm...We need health care reform...with the Public Option.


Day 5 at Sickle Cell Camp.....


The children received a VIP at camp today...Kurt Rambis, asst. coach for the Los Angeles Lakers. Can you imagine their excitement...A Laker, The NBA Champions, came to visit them?

Another Camp Story

As I mentioned before...Last night the camp had a scavenger hunt and one of the staff dressed up as the princess. She wore a blonde wig and heavy red lipstick. She was really working her stuff. Today, one of the little boys came up to her and said, "you are the princess!" She responded, "that wasn't me." He responded, "yes it was, ...you have the same teeth."

You have to love these kids...they are a unique blessing. To view pictures from camp, go to the link below.


http://picasaweb.google.com/lh/sredir?uname=scdfc1957&target=ALBUM&id=5361156216138516001&authkey=Gv1sRgCPXrw8iz8c7CmwE&feat=email

MORE NEWS FROM CAMP CRESCENT MOON

What a Great Day! I just received the most wonderful present of selflessness given to me...The Sickle Cell Camp at Camp Crescent Moon sang Happy Birthday to me. From Los Angeles to Emory Hospital in Atlanta, their voices rang loud and clear. My heart was so warm and my Soul touched. The Joys of Living!

Camp seems to be going well according to my sources...Tara, Portia (my daughters) and Mary (President and CEO also my sister-in-law) According to them, The camps theme is "Hollywood by day, Super-Hero by Night". They are seeking a villain who roams the camp.

Last night they enjoyed a scavenger hunt to find leads about the villain and trying to rescue the princess. To say the least the Boys won the scavenger hunt.

There are 75 campers along with the staff, volunteer counselors, nurses, doctors and a host of others...including a film crew...filming the video. All come together to make sure that the Kids are in the most comfortable environment possible. The staff is terrific and the Kids are so appreciative.

One of the staff overheard two of the boys talking...One asked the other "do you have sickle cell?" The other answered, "yes". He said, "Do You?" "How about that." This is what camp is all about...The recognition that each one of us is not alone and the acknowledgement that our disease should not be something we are ashamed of. Until we see this as a community and show ownership Sickle Cell will always be looked upon as an orphan disease. That's why I love this camp. It is an opportunity for the youth who are affected by a devastating disease to spend a week not thinking about how they feel and how dependent they are on family and caregivers. They also have a week to dream and believe that all things are possible. God Bless Them All.

Sickle Cell Disease Foundation of California Camp Starts July 18

How many of us volunteer for Sickle Cell Community Awareness and Service? Some of us are often too sick to volunteer...but some of us are just too lazy.

My sister in law, Mary Brown, is the President and CEO of the Sickle Cell Foundation of California, located in Los Angeles, CA. The first and oldest foundation devoted solely to children with Sickle Cell Disease. They have been in the business for 52 years. As you all can attest to, many institutions with the purpose of finding a cure for SCD are either out of business or under funded. Most diseases affecting black people receive little support from their own community and minimum support from government. Until we raise our voices and demand support this will always be the case. Let Me Get Off My Soap Box!

My reason for posting this blog is to encourage you, your family and friends to get involved. I say this because my daughters have flown to LA every summer as volunteers at the camp. My son supports the camp when he can. They enjoy interacting with the young people who for 1 week have the opportunity to camp with those who have the disease. They feel comfortable around each other, they don't live in fear that they will be ostracized, they learn about their disease and how they and their family can advocate care and treatment during times of need. But, most importantly, they have BIG FUN! They make a video each year and give it to the kids to not only remember the good times but as a keepsake for when times are hard. The video reminds them that no matter what they go through... we have many moments of happiness.

Like many of us, challenges will always be ahead. Just this week...two days before camp the Foundation was vandalized and all of the Lap tops were stolen from the office. In addition funding the camp was touch and go and even I wrote letters to the Food Network and Oprah to help with finding the funds needed to help with food and a Cook for the Camp. To say the least, no one responded to my plea. Yet, I was willing to try anything to help the camp. You see, when I was young there was no camp(s). I had no one to talk too. No one who could understand what I was going through.

I am sure there are many organizations or non profits who support SCD. I have one which is my favorite. If you would like to donate please call Mary Brown. (310) 693-0247 or write to her at 6144 Bristol Pkwy, Suite 240, Culver City, CA 90230.

Keep On Keeping On

After a battery of tests to see what is causing the heaviness in my chest we all agree that it is not heart or lung related issues. Therefore, my physicians feel that it must be a crisis located in my sternum. I found it hard to believe since this discomfort did not present itself as pain. Typically, my crisis does not last more than several days, yet this discomfort has lasted about 7 days although pain meds seem to help aleviate the heavy chested feeling.

Further analysis of my bloodwork did not indicate that I was too dry which throws me into crisis nor point out that I may be in Congestive Heart Failure. Everything so far is turning out normal. So WTF is going on?

One of the essential requirements for extending our life span is to have a team of Doc's who communicate not only with each other but also with the patient. Sometimes they may not know what is wrong with us. Our disease is so unpredictable that we must not let the unknown get the best of us. Believe me I've been tried. We must at some point have confidence in our team to come up with the right diagnosis and strategy. A good team of doc's will go a long way towards coping with the unknown.

With the rising cost of health care we must advocate not only for change but also being treated with the dignity and respect required for all illnesses. SCD is so misunderstood (to be discussed at a later time) it is my hope that blogs, websites, chats and other mediums can be used to get our stories out so that people can better understand our disease.

Oh, by the way here is a link to an article on the health care cost for those with SCD, http://www.reuters.com/article/healthNews/idUSTRE5623EL20090703

Staying On Top

Well...I'm back in the hospital and felt the need to communicate with those who follow this blog.

For several days I felt like I was carrying around a load on my chest. Immediately I thought about Congestive Heart Failure and thought I needed to get this checked out. Well, my nephrologist whom I had an appointment with immediately called my hematologist and they thought that I needed to be admitted. Overall I feel pretty good. What this underscores is the need to have a good team of Docs.

This brings me to my second point of discussion. What happens to those of us with SCD between pediatric/young adults and that transition period before middle age? Do we fall through the cracks before seeking care? Do we have to face a life or death situation before we find a doctor? Do we seek a quality doctor/patient relationship only when we have to? Or, do we actively seek improvement to our quality of care and quality of relationships with our caregivers? What do you think?

If you know someone who needs quality care....help them get it!