Thursday, January 29, 2009

Minority Nurse Article

Hey everyone,

I just got featured in this month's issue of Minority Nurse magazine. The tile is "Providing Culturally Competent Care for Sickle Cell Patients". The author interviewed me and used some of my responses in the article.

Not only that but it's an excellent article that helps to educate the public and medical professionals about the problems sickle cell patients constantly have to fight. If you have a moment, check it out HERE and print it out, paste it places and forward it to your friends. The more people that read this, the better.

Wednesday, January 28, 2009

Announcements, Announcements, Announcements!

Hey everyone,

If you have gotten your Nicosan shipment and would like to take part in a study regarding that documents the benefits of Nicosan please email me. I'm also interested in Hydroxyurea users or people that use other drugs and alternatives. I'm trying to conduct a pain survey that observes the different non-traditional treatment alternatives to create some documentation for sickle cell patients.

If you haven't gotten your Nicosan shipment yet and it's been 2-4 weeks since I emailed you (or 6 weeks since you ordered), please email me. I'm trying to figure out who has and who hasn't gotten their order.

My email is on the left side of the sidebar, for those of you that don't have it.
This announcement will stay up for a week, please scroll down for fresh posts.


Monday, January 26, 2009

Changing the Image

Okay sickle cell warriors, it's time for some frank talk. I'm sick and tired of hearing how lazy people with sickle cell are. I'm sure that the majority of us aren't...but for some reason, the public has the notion that we are just milking 'the system' for our pain, are too lazy to get a 'real job' and are drug addicts.

You've all heard my rants about public perception and my efforts to educate those I come in contact with. But standing on my soap box will only educate so many. We all have to join together to change the face of sickle cell.

One of my nursing friends who works in Georgia commented that she had worked with many sickle cell patients, and she made a few generalizations which provoked another one of my soap box tirades. But sitting back listening to what she was saying, I realize that although she was overly judgmental and uneducated regarding sickle cell, the sicklers that she had come across had created a bias in her.

"They just go from hospital to hospital seeking drugs. Some lay in the bed for days, sometimes weeks and don't even brush their teeth. They act like princesses, requesting all kinds of food and pain meds around the clock."

Yes darlings, I did set her straight, but at the same time, I had to listen to what she was saying. She's been a nurse for 15 years, and has taken care of scores of sickle cell patients...yet the majority had this 'victim' mentality.

We are not victims. We are survivors. Stop laying in bed having a pity's just a disease. You aren't dead yet, pain is just another fact of our lives, so please, don't whine and complain that it's the end of the world.

Personally, I hate it when people pity me, it makes my skin crawl. So I do everything in my power to avoid that, and draw strength from within, living my life the best way that I can.

I'm in school, have a demanding job, maintain a good relationship and travel constantly. If I can fulfill my can you. Having sickle cell is not the end of your please warriors, no more playing the Victim card. It's so not us.

Yes, we fall sick alot, yes we visit the hospital several times a year...but that doesn't mean that we have to enjoy it. Do whatever you have to do to get out of that hospital bed and back to your wonderful life. Being in the hospital is not a vacation or a walk in the park, it's sheer purgatory and you should be doing your best to get out. Whether it's walking, washing up, eating healthy, hydrating your best to get better and back to the real world.

Live your life and please be a sickle cell warrior and example wherever you are. Do your part to change the face of sickle cell.

Thank you.

Wednesday, January 14, 2009

Hydroxyurea...for those who like it...

I got this from one of my readers and decided to share this with everyone. It was on the comnparison of Nicosan versus Hydroxyurea post. I know that this blog might have become a one note wonder because Nicosan has worked miracles for me...I mean, it's almost 10 months and counting with no pain, crises or negative side effects.

Being that I've never been on Hydrea, I'm not the one to give you an unbiased opinion. So anyway, for those of you that are on the Hydroxyurea band wagon....this one's for you from J.

I was reading your Hydroxyurea/Nicosan comparison, and thought I needed to write you. I am 35 yrs old and have SS. I would say I’ve been on Hydroxyurea for at least ten years if not more. My liver and kidney are frequently checked and are in great shape. When I first began taking Hydrox. in my mid-twenties, it raised my hemoglobin levels from about 6 to 8. It hovered in 7.5-8 from that time until about three years ago. For a while it stayed in the mid 6 range, but the past year it stays at 5.2.

Over the past ten years I’ve been on Hydrox., I typically have been hospitalized once every 2-3 years. This is a massive difference over previous years before Hydrox. where I was admitted a couple times a year in my early adulthood. My number of crisis most certainly drastically reduced the first 8 years while on it, though the past couple have been a struggle.

In regards to side affects from Hydroxyurea, I’ve had: zero hair loss, zero loss of appetite, zero drowsiness, zero nausea, zero vomiting, zero diarrhea, zero constipation, zero stomatitis, or zero anorexia. If we read the possible side affects of every pharmaceutical we take, every single one is going to have a list of scary ‘possible’ side affects. We just have to weigh it out.

So I just wanted to write and let you know Hydroxyurea is a medication that has been of great benefit to me with little or no side affects. The past year or two, it has not been of as great of help to me as previous years; this is mostly due to my age, the severity which SC affects me and the damage done to my body from Sickle Cell. I personally would encourage every person with Sickle Cell--with the approval of your doctor of course—to give Hydroxyurea a try. If it doesn’t work, you can always stop.

Thursday, January 1, 2009

New Years

Happy New Year everyone!

I hope this year brings much success, less pain and more love!