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.

Symptoms
Cold
Flu
Fever
Sometimes, usually mild
Usual; high (100-102 F; occasionally higher, especially in young children); lasts 3 to 4 days
Headache
Occasionally
Common
General Aches, Pains
Slight
Usual; often severe
Fatigue, Weakness
Sometimes
Usual; can last 2 to 3 weeks
Extreme Exhaustion
Never
Usual; at the beginning of the illness
Stuffy Nose
Common
Sometimes
Sneezing
Usual
Sometimes
Sore Throat
Common
Sometimes
Chest Discomfort, Cough
Mild to moderate; hacking cough
Common; can become severe
Complications
Sinus congestion; middle ear infection
Sinusitis, bronchitis, ear infection, pneumonia; can be life-threatening
Prevention
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.
Treatment
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 docprjtquery@demarfilms.net

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!

Regards,
Production Team
Project Hemoglobin S 2010

Friday, October 30, 2009

Nicosan Rising

Okay, so ever since I wrote the Nicosan Woes post, I've gotten several people wanting to know what's the new scoop on Xechem. I've kept my ears to the ground, and after emailing a few great Nicosan friends and supporters, have found out that things seem to be looking better and brighter for Nicosan. I won't go into too much detail on the particulars, since I don't want to jinx anything, but here is the word on the streets...

Although the company Xechem did file for bankruptcy in 2008; the formula for Nicosan doesn't belong to Xechem, it belongs to NIPRD (which is the National Institute for Pharmaceutical Research and Development). Anyway, due to the instability of Xechem in 2008, NIPRD revoked the production license of Nicosan through Xechem.

The factory is still intact however, and several awesome and passionate people have been working around the clock for the last couple of months trying to get everything squared away on the financial and legal front so that production can start again.

Alot of investors are needed to financially back the new management that took over Xechem and this is one of the holdups. However, once the money part is squared away, NIPRD should be giving the license back to the new Xechem (and I'm not sure if it's going to be called Xechem any longer), once the new management has proven that they are capable of running the company and Nicosan the way it's supposed to be run.

The good news is that the people at the helm now are dedicated and absolutely determined to get Nicosan back on the market as fast as possible, and even continue the process to getting it approved in the US. One of the original scientists who helped in developing the formula is also back in the picture, and I know that the company is going in the right direction---finally!

This has eased alot of my anxiety, just knowing that the transition is occurring and the process is moving forward. We still need your prayers and support to get the final kinks worked out in Nigeria with all the stakeholders involved. And of course, if anyone would like information in investing towards Nicosan, I can lead you to the right people.

If anyone has any other information, questions or contributions, please leave a comment or shoot me an email.

Thursday, October 29, 2009

Please Vote

Hey everyone,

I got nominated for this years Top Health Blogger on Wellsphere. All I need is some votes to win. Click here and vote for my blog. Thanks!

People's HealthBlogger Award - Help Vixen win!

Wednesday, October 21, 2009

Sickle Cell Documentary

I came across this and thought someone might be interested. I've already sent in a request for more information (gotta do research for y'all first:)

New and Engaging Documentary currently in Production seeks more cast members!

Does someone you know or even yourself have Sickle Cell Disease? We are still seeking individuals and families willing to participate in this wonderful awareness campaign! Tell your story! Let the world know the life of a Sickle Cell patient.

If you or someone you know have a thought provoking story and are willing to share it you are encouraged to respond!

We are looking for fun people with wonderful personalities.
If you are a success story and have beat the odds WE WANT YOU!
Maybe you were told you had a life expectancy of 13 and are currently in your 30s....WE WANT YOU?
Maybe you were told you would be too sick to accomplish or participate in normal life activities and now you are a star basketball player or artist or even doctor....WE WANT YOU!
Maybe you always hear Sickle Cell is a Disease only African Americans have and you are of another race...WE WANT YOU
Maybe you have a loved one who lost their fight but lived a glorious purpus filled life...WE WANT YOU
Maybe you are the proud parent of a newborn and just found out your child has SCD...WE WANT YOU
Maybe you live the life of a normal teenager, only, you have a disease for which your classmates and friends don't understand....WE WANT YOU

Respond now do not wait....be a part of a special group of people collectively creating a body of work that will erase the stigma, educate, and empower those who have no idea what this disease is and how it effects the lives of those who live with it.

All ages are encouraged to respond. This includes Parents of Newborns to 17 years old.

In the meantime you are encouraged to Join Our Fanpage on FACEBOOK. Just copy and paste the link below into your browser and you're on your way!
http://www.facebook.com/pages/project-hemoglobin-s/136802918724

We are a Los Angeles based company and this casting is open to anyone anywhere in the continental United States!

Send All inqueries to the address below and our creative staff will be in touch with you on the details.

Good Luck to you all!

Subject Line: Documentary Interview
docprjtquery@demarfilms.net


Sunday, October 11, 2009

Near Death Experiences with Sickle Cell

I'm sure many sickle cell warriors can relate to having near death experiences. I've been deathly ill a quite a number of times, but out of those numerous admissions, only once can I quantify as being near death.

The first was in 1993. I had Malaria, Cholera and Pneumonia when I was 13 in Nigeria. I had passed out about 10 blocks from home when I was walking home from the bus stop. One of the women on the street recognized me and carried me all the way home. She didn't know exactly where I lived, but some other neighbors saw me and showed her my house. My parents rushed me to the hospital. I don't remember much from that time, but I was in the hospital for 3 weeks.

The second was in 2001. I had gotten acute chest syndrome, and it was so bad that I was placed on BIPAP. In addition my liver enzymes were so high, I was beyond jaundiced, and had to have my a hemapheresis done. This is like dialysis, but they drew out all my blood and infused me with 6 units of fresh blood. My sister said the blood coming out of my body was almost black, the doc said there was no oxygen and the cells had been completely broken down (I had very few viable red blood cells).

The third was just last year, a few days after I started taking Nicosan. It was the flu turned to pneumonia, turned to Acute chest, and I had to be placed on the Ventilator for 2 days as they forced oxygen to my lungs. When I was extubated, I was so grateful to be able to breath normally! I was in in the hospital for 10 days that time.

Most of the time, when I get really, really sick, I don't remember anything at all. I think the forgetfulness is my mind's response to how frightening the whole encounter must have been. I really fear getting into respiratory distress, pneumonia or acute chest syndrome again. It seems to be the pattern of my near death experiences.

What about you? Any near death experiences?