Thursday, December 31, 2009
Monday, December 21, 2009
Sickle Cell & Depression
Question: How do you stay positive when you have sickle cell and its causing other significant health problems?
It can be quite easy to slip into the doldrums and depression, especially when it feels like we are constantly beset with one physical ailment or another. I can't claim to be just a 'happy person' or that "God's grace is sufficient...." Realistically...when the doctor comes to your hospital bed with the 'bad news' face...nothing in that moment helps as you feel your heart dropping to the bottom of your toes.
I will truthfully acknowledge that as a sickle cell warrior, I go through the same dark moods and gray emotions and everyone else. You aren't immune from feeling sad, angry or depressed...it's how you cope with it, that is what sets one apart from others. Depending on how dark my emotional bout is, I usually do a variety of things.
1. Relax: I do whatever it takes to make me relax. Sometimes it's a hot bath, self mani/pedi or a good book. Sometimes I just lie in the dark, listening to my breath and good music. Sometimes I go shopping...or immerse myself in video games. You have to find something to do that just makes you relaxed and mellow.
2. Rejuvenate: It can be hard to be emotionally strong when it seems like everything is falling down. For me, I realized last year that it's okay, I don't have to be strong all the time. It's okay to let loose and cry, and to wallow in my emotions. Usually at the end of the session, I feel much better, having those emotions drained out of me. Holding on to negative energy and emotions leaves me tight and frustrated. Rejuvenation is a process of letting go of all the emotions...the anxiety, the fear, the tears, whatever it is.
3. Conversation: Have you heard the saying, a problem shared is a problem half solved? When I get so upset, and none of those steps above help, I usually vent to my best friend. She doesn't have sickle cell, but I just unload all my emotions on her. Talking about it...even though she can't physically do anything to help lifts a huge load off my shoulders. No man is an island, and we can't go through this alone. So find your 'person', that you can talk to about this, and just go ahead and vent. Blow off the steam and let it out.
4. Realization: I realize that God gave me sickle cell for a reason. And my life is one of testimony. Surviving and loving my life with sickle cell is just another avenue of that testimony. I feel that I have sickle cell, not because it's genetic, but because of a purpose, because it's part of my destiny and there is a reason for the agony and pain.
That is usually my process. I try to relax, and if that fails, I let those emotions out. I cycle through all of the steps until I'm able to once again reach my center. Yoga and exercise do help...I find that when I"m feeling better about my body, and feeling physically fit and strong, I tend to get less depressed. I'm also a big fan of music...I have a playlist on my iPod and computer for those dreary days. Find the music that motivates you and imbues you with strength. Sing out loud. Dance.
Revel in your body and in your existence. I'm alive! That is the most beautiful thing of all. I could have been dead since my childhood or any other age between then and now. But I'm alive. I'm living...and life is wonderful!
It can be quite easy to slip into the doldrums and depression, especially when it feels like we are constantly beset with one physical ailment or another. I can't claim to be just a 'happy person' or that "God's grace is sufficient...." Realistically...when the doctor comes to your hospital bed with the 'bad news' face...nothing in that moment helps as you feel your heart dropping to the bottom of your toes.
I will truthfully acknowledge that as a sickle cell warrior, I go through the same dark moods and gray emotions and everyone else. You aren't immune from feeling sad, angry or depressed...it's how you cope with it, that is what sets one apart from others. Depending on how dark my emotional bout is, I usually do a variety of things.
1. Relax: I do whatever it takes to make me relax. Sometimes it's a hot bath, self mani/pedi or a good book. Sometimes I just lie in the dark, listening to my breath and good music. Sometimes I go shopping...or immerse myself in video games. You have to find something to do that just makes you relaxed and mellow.
2. Rejuvenate: It can be hard to be emotionally strong when it seems like everything is falling down. For me, I realized last year that it's okay, I don't have to be strong all the time. It's okay to let loose and cry, and to wallow in my emotions. Usually at the end of the session, I feel much better, having those emotions drained out of me. Holding on to negative energy and emotions leaves me tight and frustrated. Rejuvenation is a process of letting go of all the emotions...the anxiety, the fear, the tears, whatever it is.
3. Conversation: Have you heard the saying, a problem shared is a problem half solved? When I get so upset, and none of those steps above help, I usually vent to my best friend. She doesn't have sickle cell, but I just unload all my emotions on her. Talking about it...even though she can't physically do anything to help lifts a huge load off my shoulders. No man is an island, and we can't go through this alone. So find your 'person', that you can talk to about this, and just go ahead and vent. Blow off the steam and let it out.
4. Realization: I realize that God gave me sickle cell for a reason. And my life is one of testimony. Surviving and loving my life with sickle cell is just another avenue of that testimony. I feel that I have sickle cell, not because it's genetic, but because of a purpose, because it's part of my destiny and there is a reason for the agony and pain.
That is usually my process. I try to relax, and if that fails, I let those emotions out. I cycle through all of the steps until I'm able to once again reach my center. Yoga and exercise do help...I find that when I"m feeling better about my body, and feeling physically fit and strong, I tend to get less depressed. I'm also a big fan of music...I have a playlist on my iPod and computer for those dreary days. Find the music that motivates you and imbues you with strength. Sing out loud. Dance.
Revel in your body and in your existence. I'm alive! That is the most beautiful thing of all. I could have been dead since my childhood or any other age between then and now. But I'm alive. I'm living...and life is wonderful!
Thursday, December 17, 2009
Sickle Cell Documentary Photo Collage
Project Hemoglobin S December 17 at 1:13am Report
Our Documentary needs faces!
We have a collage we're featuring in our film of Sickle Cell Survivors! If you would like to have your picture featured in our film during our collage of Sickle Cell Survivors Contact Us! We'd Love to have you! Let the world know you have Sickle Cell, Sickle Cell does not have you.
The process is simple:
Email us stating your interest
We forward you a release form
Take a cool picture of yourself, scan it and submit it to us as a jpg or bitmap file along with the release form allowing us to use your image in our film and that's it!
It's all that simple!
Submissions go to :
docprjtquery@demarfilms.net
Our Documentary needs faces!
We have a collage we're featuring in our film of Sickle Cell Survivors! If you would like to have your picture featured in our film during our collage of Sickle Cell Survivors Contact Us! We'd Love to have you! Let the world know you have Sickle Cell, Sickle Cell does not have you.
The process is simple:
Email us stating your interest
We forward you a release form
Take a cool picture of yourself, scan it and submit it to us as a jpg or bitmap file along with the release form allowing us to use your image in our film and that's it!
It's all that simple!
Submissions go to :
docprjtquery@demarfilms.net
Saturday, December 12, 2009
Minority Nurse Article
Here is the Minority Nurse article I got featured in last year. It's titled Providing Culturally Competent Sickle Cell Care.
So I guess now you know my real name:)
So I guess now you know my real name:)
Friday, December 11, 2009
Blood Stem-Cell Transplant Regimen Reverses Sickle Cell Disease in Adults
Hey everyone, someone sent this to me today. I can't believe it but it looks like adult blood stem transplant to reverse sickle cell is officially a reality! WOOHOO!!! I know the study is still in its experimental stages, but I can't help it but to be totally stoked and excited.
Sources:
Emery, Gene (December 9, 2009). Marrow transplant cures adult sickle cell disease. Retrieved December 10, 2009 from http://news.yahoo.com/s/nm/20091209/hl_nm/us_sicklecell_transplants
National Institutes of Health. Blood Stem-Cell Transplant Reverses Sickle Cell. Retrieved from http://www.nih.gov/news/health/dec2009/niddk-09.htm
A team led by Dr. John Tisdale at the National Institutes of Health is performing experimental blood stem cell transplants for sickle cell--using stem cells from healthy siblings.Health care providers — and sickle cell patients and family members who may be interested in joining NIH blood stem-cell transplant studies — may call 301-402-6466 for more information. Calls will be returned within 48 hours.
Sources:
Emery, Gene (December 9, 2009). Marrow transplant cures adult sickle cell disease. Retrieved December 10, 2009 from http://news.yahoo.com/s/nm/20091209/hl_nm/us_sicklecell_transplants
National Institutes of Health. Blood Stem-Cell Transplant Reverses Sickle Cell. Retrieved from http://www.nih.gov/news/health/dec2009/niddk-09.htm
Thursday, December 3, 2009
Living in a Cold Place with Sickle Cell
Question: Since your location is in Oregon; could you tell me how you have coped with the cold weather? I'm thinking of moving to a cold area, but I am really scared of how it might affect my health given the fact I've never lived in a cold place before.
I've lived in Baltimore, MD and Berrien Springs, MI...both of which are infinitely colder than Portland, OR. To survive, I usuallly pump up the heat in my home around 69 degrees on mild days, and up to 72 degrees on colder days during the winter and cold season. To save on my utility bill, I also augment with using space heaters versus heating the whole house at night. My centralized heating drops to 67 degrees automatically during the day when I'm not home.
When going out, I always dress as if I'm in a Chicago dead winter; with boots, hat, scarf, gloves and a heavy, lined coat with a hood. Although it might look strange to the locales, I make sure I'm warm at all times when I venture out of my house. Layering is very important, I always wear silk thermals under all my clothes, it's amazing how much warmer you are with silk thermals on. I spend more times indoors during the cold weather and tend to shy away from anything that doesn't involve me going from car to a warmer place indoors. The cold does seep into your bones and make them ache, but that's why layering and dressing for the season is very important. Of course, I do complain bitterly about the cold weather...lol.
Some people state that living in cold places makes them have more crises' but I've found for me it's actually opposite. Because I"m more aware of my surroundings, and dress for the weather, I tend to take care of myself better. When I lived in Cali, I had the most # of crises in one year than I've ever had...and it was mainly because it would be sunny during the day, and the temp would drop at night and I wouldn't be protected.
There are several SCD patients in cold places and we have learned to cope just like you have to with anything else. I wish you best of luck as you make this decision.
I've lived in Baltimore, MD and Berrien Springs, MI...both of which are infinitely colder than Portland, OR. To survive, I usuallly pump up the heat in my home around 69 degrees on mild days, and up to 72 degrees on colder days during the winter and cold season. To save on my utility bill, I also augment with using space heaters versus heating the whole house at night. My centralized heating drops to 67 degrees automatically during the day when I'm not home.
When going out, I always dress as if I'm in a Chicago dead winter; with boots, hat, scarf, gloves and a heavy, lined coat with a hood. Although it might look strange to the locales, I make sure I'm warm at all times when I venture out of my house. Layering is very important, I always wear silk thermals under all my clothes, it's amazing how much warmer you are with silk thermals on. I spend more times indoors during the cold weather and tend to shy away from anything that doesn't involve me going from car to a warmer place indoors. The cold does seep into your bones and make them ache, but that's why layering and dressing for the season is very important. Of course, I do complain bitterly about the cold weather...lol.
Some people state that living in cold places makes them have more crises' but I've found for me it's actually opposite. Because I"m more aware of my surroundings, and dress for the weather, I tend to take care of myself better. When I lived in Cali, I had the most # of crises in one year than I've ever had...and it was mainly because it would be sunny during the day, and the temp would drop at night and I wouldn't be protected.
There are several SCD patients in cold places and we have learned to cope just like you have to with anything else. I wish you best of luck as you make this decision.
Placing the Blame
Question: As the parent of a child living with Sickle Cell, I once blamed myself and felt guilty. That is no longer the case, however I do fear hearing the words...."Why did you give this to me".
Answer: I must confess, I did blame my parents...not that I have sickle cell--but that they were ashamed of me having sickle cell. Although Nigeria has the highest population of people with sickle cell in the world, it was still somewhat 'shunned' and critiqued because of the lack of knowledge. There were myths that people with sickle cell couldn't have kids, would die young and no one wanted to marry someone with sickle cell.
Consequently, my condition was kept as a big secret in our family for most of my childhood and youth and the shame made me feel abnormal, weird, and different. My parents had often shared with me that they didn't know anything about sickle cell then, but even if they did...they wanted me so badly that it wouldn't have mattered to them. My mom also did tell me that she wishes that she had sickle cell instead of me...(that made me cry).
However, whenever I was sick, my parents were sick right along with me, and emphatically feeling my pain and crying with me. I hated being sick more because I would see how much my crises hurt them, and that just broke my heart.
I hope that your child never throws those words at you, but to me, I know that my parents felt so guilty and regretful already, and I never said it...mainly because I could tell how much they hurt when I was sick. Whatever happens, please make sure your child as an outlet to vent their frustrations with sickle cell. I would have given anything to have a support group growing up, of people just like me...because back then there was so much that I didn't know and so many emotions that I had that I couldn't share with others without sickle cell.
Answer: I must confess, I did blame my parents...not that I have sickle cell--but that they were ashamed of me having sickle cell. Although Nigeria has the highest population of people with sickle cell in the world, it was still somewhat 'shunned' and critiqued because of the lack of knowledge. There were myths that people with sickle cell couldn't have kids, would die young and no one wanted to marry someone with sickle cell.
Consequently, my condition was kept as a big secret in our family for most of my childhood and youth and the shame made me feel abnormal, weird, and different. My parents had often shared with me that they didn't know anything about sickle cell then, but even if they did...they wanted me so badly that it wouldn't have mattered to them. My mom also did tell me that she wishes that she had sickle cell instead of me...(that made me cry).
However, whenever I was sick, my parents were sick right along with me, and emphatically feeling my pain and crying with me. I hated being sick more because I would see how much my crises hurt them, and that just broke my heart.
I hope that your child never throws those words at you, but to me, I know that my parents felt so guilty and regretful already, and I never said it...mainly because I could tell how much they hurt when I was sick. Whatever happens, please make sure your child as an outlet to vent their frustrations with sickle cell. I would have given anything to have a support group growing up, of people just like me...because back then there was so much that I didn't know and so many emotions that I had that I couldn't share with others without sickle cell.
Tuesday, December 1, 2009
American Society of Hematology Conference
I know it's probably late for anyone to travel there, but if anyone is in New Orleans...this conference just might be for you ~ by the American Society of Hematology.
I thought you and Sickle Cell Can Kiss My A** readers might be interested in learning about some of the cutting-edge medical research directly impacting today’s patients and tomorrow’s treatment options, including research on patients with Sickle Cell Disease and H1N1, soon to be presented at the ASH 51st Annual Meeting in New Orleans, taking place Dec. 5-8, 2009.
Leading studies and topics to be presented include:
· One less defense for women in the fight against recurrent miscarriages. An increasingly common treatment for unexplained, recurrent miscarriages – a regular regimen of aspirin or other blood thinners – has been found ineffective and only puts women at undo risk, according to new research.
· Sildenafil (the medicine contained in Viagra®) found dangerous for men with Sickle Cell Disease (SCD). New research demonstrates that using sildenafil (more commonly known as the medicine Viagra® and Revatio™) is not effective – or safe – for lowering high pulmonary blood pressure in patients with SCD. SCD is one of the most common genetic blood disorders affecting millions of people around the world.
· Defining the H1N1 profile: Patients with SCD at higher risk, in need of first available vaccine. H1N1 demonstrates a disproportionate incidence rate and increased risk of hospitalization among patients with SCD, according to findings from Johns Hopkins University.
· Advance Care Planning (ACP) linked to improved outcomes of patients with blood cancers. New study demonstrates the correlation between ACP and coping patterns and improved outcomes of patients with blood cancers.
We’d be thrilled if you’d be interested in sharing this late-breaking research and its treatment implications with your readers and those on the Sickle Cell Forum. If you’d like, I can also provide:
· Expert insight from study authors
· Full study abstracts and newly released research results
· Insights on the 51st Annual Meeting and background on the Society from hematologist and ASH President Dr. Nancy Berliner
· Patient points of view
For up-to-date information about the 2009 ASH annual meeting, follow ASH_Hematology on Twitter at http://twitter.com/ASH_hematology (also follow hashtag #ASH09), and please visit www.bloodthevitalconnection.org, which provides hematologist-reviewed information about common blood conditions, risk factors, preventive measures and treatment options to educate consumers on common blood conditions including:
· Anemia
· Bleeding Disorders
· Blood Clotting Disorders
· Blood Cancers
· Women’s Health Concerns
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.
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 out...to 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 hand...to 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 it...no one understood anyway and I despise pity! Talking about it just wasn't something that I did...it 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 know...so 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.
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. ;)
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.
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
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.
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!
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!
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
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?
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?
Friday, October 2, 2009
Tuesday, September 29, 2009
Nicosan Testimonial
One of my readers who has been on Nicosan for about a year now, has written this wonderful review that I would like to share with everyone. If anyone else has a Nicosan story that they would love to share; good, bad or indifferent; please send it my way. Also, if you would like to ask any questions about this, please leave a comment below or send me an email.
To whom it may concern,
I am an African-American male with Sickle beta Thalassemia and I have been meaning to write something on my experience with Nicosan to give other people trying to manage sickle cell more perspective. Currently , I am school and I hope to graduate soon as an RN. I only mention this to let everyone that I do have a medical background. However, my medical background isn’t supposed to convince you to take Nicosan. My main point is only to illustrate to you that I did EXTENSIVE research into the literature that’s available and am able to understand what the studies refer to.
So I have been taking Nicosan for about a year. I take my pills every day, and don’t skip any days. I usually take them with food because I also take a multivitamin which makes me feel nauseous if taken on an empty stomach. When I first heard of Nicosan I was extremely skeptical. I am very active with staying up to date on current research into Sickle Cell treatments. Hearing of any cure/treatment becomes one of those things that makes you afraid to hope. However, I looked at the early studies for Nicosan and they are very strong. It is very rare to find a double blind, randomized, prospective study. However, I had an issue with the fact that I found this over the internet. My thought was anyone can make claims over the internet and I wanted to speak with someone that actually takes it. Well, I did and I was convinced to purchase them. In a couple of weeks my Nicosan shipment arrives. Well, I still don’t take them because I’m still worried that it won’t work and they could be harmful. Well, I was finally told “what are you waiting for”. To be honest, the fear of disappointment was probably what was holding me back. So I started taking them and below I have written a little bit about my experience. I hope this is helpful.
Onset of effectiveness.
So my experience has been that you really do need to wait a little time to see a difference. The thing that makes what we are doing tough is that we aren’t looking for something to happen, we are hoping for something not to happen and the only the way to prove that is time. Initially, when I begun taking Nicosan I actually had these very small pains in places I normally didn’t. It was almost as if I was having a micro-crises, if that even makes sense. For example, I really can’t remember ever having pain in my hands, but when I first started Nicosan I did. However, these could be easily managed with Tylenol or Advil, but I didn’t take anything because I dislike frequently taking pain medication.
Threshold of Crises
So this factor is one of the biggest differences that I have seen with Nicosan. I am very careful with monitoring my activity level to prevent a crisis. As I have found that an ounce of prevention in worth a pound of cure with Sickle Cell. I can honestly say that I am able to do and be more athletic than I was before taking Nicosan. Although I didn’t do a “double-blind randomized controlled study” or anything, I did keep track of my workout. Before Nicosan I wasn’t able to perform cardiovascular workouts very well. I could maintain a low intensity cardio workout just fine, however, I kept my heart rate low to decrease the amount of oxygen I would need. After Nicosan, I was putting my heart rate higher without any problems. Any pain that I experienced I would just take motrin 400mg. This for me was a very big deal. Now please don’t think that I became a marathon runner by taking Nicosan, I still don’t do certain things like running because it causes me problems the easiest. Personally, I like the elliptical. However, the point I’m making is I am able to be healthier than I was before. I really don’t’ know what my true limit is because I never push it. That’s just a part of managing sickle cell. However, the psychological fear of pushing myself was very strong. This feature is characteristic of many people with chronic disease. Studies have shown that chronic disease affects every part of your life. As a consequence of reducing the “threshold of crises” it reduces my fear of being active.
Quality of Crises
So this area is very subjective. I want to make sure to mention that someone’s experience in this area could really vary. Over the year that I was taking Nicosan I never really had any episodes that I would consider big crisis. However, when I first started and when I got the flu I did have a crisis. Ordinarily, when I have a “real” crisis it lasts about three days, with the 1st day being the worst and it getting progressively less painful by the end. Generally, on the 4th day I don’t have to take any medication. However, after being on Nicosan they were different. The crisis for me actually lasted a little bit longer, however it was significantly less intense and painful. The crisis could basically be managed with less medication and it wasn’t as debilitating. This seemed kind of strange to me and really I can’t say that Nicosan was directly the cause because so many different factors affect the course of a crisis. However, it’s not something that I had experienced before taking Nicosan.
Frequency of Crisis
The frequency of crisis goes hand in hand with the threshold. If it is harder to have a crisis from taking Nicosan then hopefully I will have less of them. This really has been the case. I was free from any significant pain that required medication (including motrin or Tylenol) for almost a year until I got the flu. Plus, I was very active. I was working a lot and very stressed out from school. However, I also made sure to drink 3 liters of water per day.
Story of an ER Visit
My brother has sickle cell as well and I told him to take Nicosan. Well he had only been on it for a week and was on a long flight when he started having abdominal pains. Needless to say, they made him go to the ER by ambulance during a layover. So he called me. Every time a Physician spoke with him he called me three-way. I basically, informed the Attending physician, the resident, and everyone else who needed to know what Nicosan was. I informed them how it works in the body and directed him to look it up on the Cochrane review database (this is a peer reviewed database to evaluate research). Now remember, this is a medication that has orphan drug status in the US, but still isn’t FDA approved yet. Do you know what his discharge instructions said when they let him go? “Continue taking Nicosan as you were” They couldn’t find anything wrong with it. Now, they didn’t prove it worked or anything. But, they didn’t tell him not to take it. I personally, think that fact says a lot.
[Note]
I would like to sincerely thank Vixen for all of her efforts to help support others with sickle cell. Her blog and her willingness to put herself out there for something she believes in is incredible. I can’t remember how I happened to come across her blog, but I did and I would never have found Nicosan if it wasn’t for her. I’m not sure if everyone that visits her blog are really aware at how much of a “secret” Nicosan is. I have spoke with so many people in the medical field who have no idea that it exists and have never heard of it. Now, these aren’t just ordinary people, they are professors and researchers who still don’t know. I have even spoken with medical professionals who are from Nigeria who have never heard of it. So what Vixen is doing is huge. I think we all should appreciate what she has done because I have learned that it’s on us to manage our illness. I realized when I was a teenager that no one can carry my load and that means that they can’t manage it for me. No one can know what it’s like to be you, and because of that I don’t let anyone tell me I’m faking, exaggerating, not that bad, or not in pain.
To whom it may concern,
I am an African-American male with Sickle beta Thalassemia and I have been meaning to write something on my experience with Nicosan to give other people trying to manage sickle cell more perspective. Currently , I am school and I hope to graduate soon as an RN. I only mention this to let everyone that I do have a medical background. However, my medical background isn’t supposed to convince you to take Nicosan. My main point is only to illustrate to you that I did EXTENSIVE research into the literature that’s available and am able to understand what the studies refer to.
So I have been taking Nicosan for about a year. I take my pills every day, and don’t skip any days. I usually take them with food because I also take a multivitamin which makes me feel nauseous if taken on an empty stomach. When I first heard of Nicosan I was extremely skeptical. I am very active with staying up to date on current research into Sickle Cell treatments. Hearing of any cure/treatment becomes one of those things that makes you afraid to hope. However, I looked at the early studies for Nicosan and they are very strong. It is very rare to find a double blind, randomized, prospective study. However, I had an issue with the fact that I found this over the internet. My thought was anyone can make claims over the internet and I wanted to speak with someone that actually takes it. Well, I did and I was convinced to purchase them. In a couple of weeks my Nicosan shipment arrives. Well, I still don’t take them because I’m still worried that it won’t work and they could be harmful. Well, I was finally told “what are you waiting for”. To be honest, the fear of disappointment was probably what was holding me back. So I started taking them and below I have written a little bit about my experience. I hope this is helpful.
Onset of effectiveness.
So my experience has been that you really do need to wait a little time to see a difference. The thing that makes what we are doing tough is that we aren’t looking for something to happen, we are hoping for something not to happen and the only the way to prove that is time. Initially, when I begun taking Nicosan I actually had these very small pains in places I normally didn’t. It was almost as if I was having a micro-crises, if that even makes sense. For example, I really can’t remember ever having pain in my hands, but when I first started Nicosan I did. However, these could be easily managed with Tylenol or Advil, but I didn’t take anything because I dislike frequently taking pain medication.
Threshold of Crises
So this factor is one of the biggest differences that I have seen with Nicosan. I am very careful with monitoring my activity level to prevent a crisis. As I have found that an ounce of prevention in worth a pound of cure with Sickle Cell. I can honestly say that I am able to do and be more athletic than I was before taking Nicosan. Although I didn’t do a “double-blind randomized controlled study” or anything, I did keep track of my workout. Before Nicosan I wasn’t able to perform cardiovascular workouts very well. I could maintain a low intensity cardio workout just fine, however, I kept my heart rate low to decrease the amount of oxygen I would need. After Nicosan, I was putting my heart rate higher without any problems. Any pain that I experienced I would just take motrin 400mg. This for me was a very big deal. Now please don’t think that I became a marathon runner by taking Nicosan, I still don’t do certain things like running because it causes me problems the easiest. Personally, I like the elliptical. However, the point I’m making is I am able to be healthier than I was before. I really don’t’ know what my true limit is because I never push it. That’s just a part of managing sickle cell. However, the psychological fear of pushing myself was very strong. This feature is characteristic of many people with chronic disease. Studies have shown that chronic disease affects every part of your life. As a consequence of reducing the “threshold of crises” it reduces my fear of being active.
Quality of Crises
So this area is very subjective. I want to make sure to mention that someone’s experience in this area could really vary. Over the year that I was taking Nicosan I never really had any episodes that I would consider big crisis. However, when I first started and when I got the flu I did have a crisis. Ordinarily, when I have a “real” crisis it lasts about three days, with the 1st day being the worst and it getting progressively less painful by the end. Generally, on the 4th day I don’t have to take any medication. However, after being on Nicosan they were different. The crisis for me actually lasted a little bit longer, however it was significantly less intense and painful. The crisis could basically be managed with less medication and it wasn’t as debilitating. This seemed kind of strange to me and really I can’t say that Nicosan was directly the cause because so many different factors affect the course of a crisis. However, it’s not something that I had experienced before taking Nicosan.
Frequency of Crisis
The frequency of crisis goes hand in hand with the threshold. If it is harder to have a crisis from taking Nicosan then hopefully I will have less of them. This really has been the case. I was free from any significant pain that required medication (including motrin or Tylenol) for almost a year until I got the flu. Plus, I was very active. I was working a lot and very stressed out from school. However, I also made sure to drink 3 liters of water per day.
Story of an ER Visit
My brother has sickle cell as well and I told him to take Nicosan. Well he had only been on it for a week and was on a long flight when he started having abdominal pains. Needless to say, they made him go to the ER by ambulance during a layover. So he called me. Every time a Physician spoke with him he called me three-way. I basically, informed the Attending physician, the resident, and everyone else who needed to know what Nicosan was. I informed them how it works in the body and directed him to look it up on the Cochrane review database (this is a peer reviewed database to evaluate research). Now remember, this is a medication that has orphan drug status in the US, but still isn’t FDA approved yet. Do you know what his discharge instructions said when they let him go? “Continue taking Nicosan as you were” They couldn’t find anything wrong with it. Now, they didn’t prove it worked or anything. But, they didn’t tell him not to take it. I personally, think that fact says a lot.
[Note]
I would like to sincerely thank Vixen for all of her efforts to help support others with sickle cell. Her blog and her willingness to put herself out there for something she believes in is incredible. I can’t remember how I happened to come across her blog, but I did and I would never have found Nicosan if it wasn’t for her. I’m not sure if everyone that visits her blog are really aware at how much of a “secret” Nicosan is. I have spoke with so many people in the medical field who have no idea that it exists and have never heard of it. Now, these aren’t just ordinary people, they are professors and researchers who still don’t know. I have even spoken with medical professionals who are from Nigeria who have never heard of it. So what Vixen is doing is huge. I think we all should appreciate what she has done because I have learned that it’s on us to manage our illness. I realized when I was a teenager that no one can carry my load and that means that they can’t manage it for me. No one can know what it’s like to be you, and because of that I don’t let anyone tell me I’m faking, exaggerating, not that bad, or not in pain.
Saturday, September 26, 2009
Mission Statement
The blog is entitled Sickle Cell Can Kiss My A** and it is a positive and yet progressive platform for me, a sickle cell patient and advocate to explore all realms of thought into sickle cell. There is so much that sickle cell warriors go through (I refuse the term sickler, since having a condition like diabetes doesn't label one a diabeters, or cancer doesn't label one a canc-ler). Sickle cell warriors are in a constant fight on a day to day basis to keep ones head above water, deal with the pain, make the right decisions in life, deal with finances, medical bills and handle the backlash, negative vibes and criticism that having sickle cell brings.
But not everyone can have an attitude of gratitude; and not everyone that has sickle cell is a Christian. My life hasn't been easy with sickle cell, and yet, through all the adversities, I've been able to overcome and live my life to the fullest potential. I'm a registered nurse, have a wonderful family of my own, working on my Master's degree and holding down a full time job. All with sickle cell. My message is that sickle cell doesn't have to own you, you are not defined by your diagnosis and you can live a rich and fulfilling life with sickle cell.
Telling sickle cell to kiss off (or kiss ass), is merely an expressive, a snub to the condition that threatens to overtake ones very existence. Though not the choicest of phrases, many people resonate with this survivor mentality and attitude. Sickle cell is not a walk in the park, it's not roses and cream, it's hard, it's a struggle and only the toughest survivors can cope without wallowing in self pity, depression or emotional lows.
Painting life pretty, ignoring the tough side, and trying to hide the pain and agony that we go through on a daily basis hasn't helped with public awareness--- it's only proliferated the mentality that sickle cell warriors are 'fakers, drug addicts, lazy, malingerers'. I don't bring sickle cell down, I don't make fun of my sickle cell warriors, I just talk about the other side of it...the real side of it. The hard side of it, that all sickle cell warriors go through but don't have anyone to relate with about it.
The public doesn't understand what we go through because NO ONE WANTS TO TALK ABOUT IT. If we don't talk about it, how will they understand? I started my blog because I couldn't find a blog that told the truth...a space that talked about the daily rigors of living with sickle cell. I've talked about relationships, work, sex, exercising, swimming, flying, fear of overdosing, hallucinations...the grittier parts of life that every sickle cell warrior goes through but no one wants to share. Other sickle cell warriors all over the world can relate to this, we are all fighting the same struggle and going through the same things.
There are many people isolated and stigmatized in the sickle cell community, in the USA, and in almost every tropical nation in the world. I've had emails from readers in Islamic countries, South American, Africa countries---even Indian and Asian populations have reached out to me, sharing their stories and building a community. Everyone has their mission, and perhaps the way I speak might rankle nerves; but I'm blunt, unorthodox, unconventional, and very happy to share my sickle cell testimony with the world.
But not everyone can have an attitude of gratitude; and not everyone that has sickle cell is a Christian. My life hasn't been easy with sickle cell, and yet, through all the adversities, I've been able to overcome and live my life to the fullest potential. I'm a registered nurse, have a wonderful family of my own, working on my Master's degree and holding down a full time job. All with sickle cell. My message is that sickle cell doesn't have to own you, you are not defined by your diagnosis and you can live a rich and fulfilling life with sickle cell.
Telling sickle cell to kiss off (or kiss ass), is merely an expressive, a snub to the condition that threatens to overtake ones very existence. Though not the choicest of phrases, many people resonate with this survivor mentality and attitude. Sickle cell is not a walk in the park, it's not roses and cream, it's hard, it's a struggle and only the toughest survivors can cope without wallowing in self pity, depression or emotional lows.
Painting life pretty, ignoring the tough side, and trying to hide the pain and agony that we go through on a daily basis hasn't helped with public awareness--- it's only proliferated the mentality that sickle cell warriors are 'fakers, drug addicts, lazy, malingerers'. I don't bring sickle cell down, I don't make fun of my sickle cell warriors, I just talk about the other side of it...the real side of it. The hard side of it, that all sickle cell warriors go through but don't have anyone to relate with about it.
The public doesn't understand what we go through because NO ONE WANTS TO TALK ABOUT IT. If we don't talk about it, how will they understand? I started my blog because I couldn't find a blog that told the truth...a space that talked about the daily rigors of living with sickle cell. I've talked about relationships, work, sex, exercising, swimming, flying, fear of overdosing, hallucinations...the grittier parts of life that every sickle cell warrior goes through but no one wants to share. Other sickle cell warriors all over the world can relate to this, we are all fighting the same struggle and going through the same things.
There are many people isolated and stigmatized in the sickle cell community, in the USA, and in almost every tropical nation in the world. I've had emails from readers in Islamic countries, South American, Africa countries---even Indian and Asian populations have reached out to me, sharing their stories and building a community. Everyone has their mission, and perhaps the way I speak might rankle nerves; but I'm blunt, unorthodox, unconventional, and very happy to share my sickle cell testimony with the world.
Sickle Cell Disease Stamp ---Do Your Part!
In 2004 the Sickle Cell Disease Awareness Stamp was created as a part of the U.S. Postal Service's stamp program that celebrates the people, events and history of our nation. It also served as another way for the U.S. Postal Service to continue its tradition of raising public awareness of health and social issues.
Many stamps have been created to support causes. However the only stamp that has gone semi-postal is the Breast Cancer Research stamp. Semi-postal means that the stamp will be priced at a higher price than the current stamp price and the difference goes to the organization as a fundraiser.
With the 100 year anniversary that sickle cell was discovered in the Western world approaching in 2010, we would like to have our stamp reissued as a semi postal stamp. Please write letters to the U.S. Postal Stamp committee requesting this action and include what it would mean to you! It is time for sickle cell disease to have more recognition and this is one way to raise awareness. We all need to take ownership of this project and see it through to the end. The Postal Service needs more business, so after the stamp is reissued we need to make a commitment to support it by visiting the post office and keeping the demand for the stamp high as possible.
Please do your part to make the 100 year anniversary a major milestone in history. The publicity and the public awareness will take sickle cell disease back to our level of prominence as an important health issue that affects everyone!
Shirley Miller
SCDAA Board Member
Sunday, September 20, 2009
True Life ---I Have Sickle Cell
Hey guys, MTV's True Life is doing a story on " I have a life altering ailment or illness." If you are interested getting our story out there then you need to send an e-mail to seriousillness@mtvn.com. You should include your name, location, phone...etc. Let's make sickle cell known to the folks at MTV~!
Thursday, September 17, 2009
Sickle Cell Test Plan by the NCAA
This article was shared at the NING sickle cell forum. The content itself wasn't bad, it just stated that the NCAA was considering mandatory screening of all players to prevent those that have sickle cell trait from adverse health outcomes.
The premise of it sounds pretty good, screen all players to protect the ones with sickle cell trait from dying or passing out due to grueling workouts; but for some reason, I can totally see the potential for this becoming very, very bad.
Remember in X-men, when they started 'screening' mutants. And then it turned out that they were creating a database to segregate them with? That's what I first thought of on reading this article. I can understand why some people are alarmed with SC trait players collapsing or dying, but if you link the sickle cell trait to this; then you are automatically increasing the stigma that sickle cell patients already have. You're pretty much saying that because we have this trait, we aren't going to be good enough to play sports with the 'normal people'. This article really rubbed me the wrong way.
We are supposed to end the discrimination not further perpetuate it. I would like input though...am I going off on a tangent here? What did you think about it?
I just have to add this quote that was towards the end of the article:
So what are your thoughts? Speak on it
The premise of it sounds pretty good, screen all players to protect the ones with sickle cell trait from dying or passing out due to grueling workouts; but for some reason, I can totally see the potential for this becoming very, very bad.
Remember in X-men, when they started 'screening' mutants. And then it turned out that they were creating a database to segregate them with? That's what I first thought of on reading this article. I can understand why some people are alarmed with SC trait players collapsing or dying, but if you link the sickle cell trait to this; then you are automatically increasing the stigma that sickle cell patients already have. You're pretty much saying that because we have this trait, we aren't going to be good enough to play sports with the 'normal people'. This article really rubbed me the wrong way.
We are supposed to end the discrimination not further perpetuate it. I would like input though...am I going off on a tangent here? What did you think about it?
I just have to add this quote that was towards the end of the article:
The United States has a long history of discrimination against people with sickle cell trait, said Troy Duster, a sociologist at UC Berkeley and New York University. In the 1960s, people who tested positive weren't allowed into the Air Force Academy, and into the '70s people were denied insurance or certain jobs, he said.
It's irresponsible to screen people when there's little scientific evidence that the gene causes death and no specific precautions athletes can take to protect themselves, Duster said.
So what are your thoughts? Speak on it
Wednesday, September 16, 2009
Taking Nicosan and Hydroxyurea
I got a question today that I couldn't answer.
Has anyone taken Nicosan WITH Hydroxyurea?
Did you notice a difference?
Have you had any side effects?
Please share your story, either via comments or through my email.
Thanks!
Has anyone taken Nicosan WITH Hydroxyurea?
Did you notice a difference?
Have you had any side effects?
Please share your story, either via comments or through my email.
Thanks!
Message
So September is Sickle Cell Awareness Month...I'm sure many of you already know.
I've been out of the SSA loop for a minute but so many of my readers are going through crises right now that it's breaking my heart. I'm sending warm hugs via cyberspace to everyone that is dealing with a crises or some medical dilemma at the moment. Stay strong, keep fighting, and know that this came to pass.
In other news, I'm in a funk today, I seem to be attracting drama everywhere I turn. My home life is great, my personal life is wonderful...but everything else? DRAMA-VILLE. The Irony of it is that I usually shirk confrontation and play the peace-maker role. So getting in the middle of all kinds of conflict is new to me...and it's freaking me out.
Please send some good vibes my way. I seriously need it.
I've been out of the SSA loop for a minute but so many of my readers are going through crises right now that it's breaking my heart. I'm sending warm hugs via cyberspace to everyone that is dealing with a crises or some medical dilemma at the moment. Stay strong, keep fighting, and know that this came to pass.
In other news, I'm in a funk today, I seem to be attracting drama everywhere I turn. My home life is great, my personal life is wonderful...but everything else? DRAMA-VILLE. The Irony of it is that I usually shirk confrontation and play the peace-maker role. So getting in the middle of all kinds of conflict is new to me...and it's freaking me out.
Please send some good vibes my way. I seriously need it.
Friday, September 4, 2009
Nicosan and Lab Levels
Questions: How long does Nicosan take to boost the HB level? Do you have a patients record or blood test results where I can actual see the improvements?
Answer: It took me about 3 months before my Hgb got a boost, but even then, I just went from my normal baseline of 8.5 to 10.6. I've been hanging in the 10s ever since. I don't have any clinical documentation on this but this is just my personal experience. Nicosan has no claims of improving the blood levels, it just helps to reduce the sickling of the cells by introducing more oxygen into the red blood cells and helping them to retain their round shape. Less sickling means less cells are dying every 10 days, which means less jaundice, and slightly less anemia.
Nicosan doesn't function to increase your HgB levels. The primary function of Nicosan, is to introduce oxygen into the sickle cells allowing them to retain the normal round red blood cell shape. The anemia is a by product of having sickle cells that die every 10 days versus healthy cells that live for 90-120 days. The overall value of Nicosan is that since the red blood cells aren't the sickle shape anymore, they aren't clumping together, hence less pain and less crises. I didn't notice an increase in my HgB values at all...and now, I'm still technically 'anemic' 10.8 at the highest; but don't have any pain, and don't have any crises. Nicosan does not work to reduce the anemia...it works on stopping crises and pain.
Answer: It took me about 3 months before my Hgb got a boost, but even then, I just went from my normal baseline of 8.5 to 10.6. I've been hanging in the 10s ever since. I don't have any clinical documentation on this but this is just my personal experience. Nicosan has no claims of improving the blood levels, it just helps to reduce the sickling of the cells by introducing more oxygen into the red blood cells and helping them to retain their round shape. Less sickling means less cells are dying every 10 days, which means less jaundice, and slightly less anemia.
Nicosan doesn't function to increase your HgB levels. The primary function of Nicosan, is to introduce oxygen into the sickle cells allowing them to retain the normal round red blood cell shape. The anemia is a by product of having sickle cells that die every 10 days versus healthy cells that live for 90-120 days. The overall value of Nicosan is that since the red blood cells aren't the sickle shape anymore, they aren't clumping together, hence less pain and less crises. I didn't notice an increase in my HgB values at all...and now, I'm still technically 'anemic' 10.8 at the highest; but don't have any pain, and don't have any crises. Nicosan does not work to reduce the anemia...it works on stopping crises and pain.
Thursday, September 3, 2009
Getting Lab Work with No Insurance
Question: How can I order lab tests if I don't have insurance?
In regards to initiating your own blood tests, you can walk into a pre-employment or non-emergent clinic, and pay the doctor to order it for you. You have to pay for the labs themselves, and the doctor visits, it will come to around $200-$300 for both I believe.
Try http://www.questdiagnostics.com/...there should be one around you somewhere. Or any clinic that does pre-employment screenings, immunizations and drug tests. They are generally not as busy as 'regular' medical clinics and they have an in house physician, PA or NP that can order the labs for you. Then you take the slip to the laboratory and have it drawn, and you will have your results either called in or mailed to you. You have to pay for everything up front though...and depending on what you order, it can get pretty pricey. I've done this only once...it was $75 to see the doc and the labs I wanted were $135. Ask about the prices before you commit and make an appointment before you go so you aren't waiting for too long.
Great question!
In regards to initiating your own blood tests, you can walk into a pre-employment or non-emergent clinic, and pay the doctor to order it for you. You have to pay for the labs themselves, and the doctor visits, it will come to around $200-$300 for both I believe.
Try http://www.questdiagnostics.com/...there should be one around you somewhere. Or any clinic that does pre-employment screenings, immunizations and drug tests. They are generally not as busy as 'regular' medical clinics and they have an in house physician, PA or NP that can order the labs for you. Then you take the slip to the laboratory and have it drawn, and you will have your results either called in or mailed to you. You have to pay for everything up front though...and depending on what you order, it can get pretty pricey. I've done this only once...it was $75 to see the doc and the labs I wanted were $135. Ask about the prices before you commit and make an appointment before you go so you aren't waiting for too long.
Great question!
Tuesday, September 1, 2009
Nicosan and Tylenol
I ordered some for my fiancé and noticed it says u have to be careful when taking it with Tylenol. Which is in about every pain med used except a couple. What problems can you have using Tylenol and Nicosan together do u know? I know you aren't a doctor but if you know anything about it I'd appreciate it.
The only thing that I've found regarding Tylenol and Nicosan is that Tylenol increases the concentration of Nicosan 'en vivo'. This means that Tylenol increases or enhances the Nicosan effect. If she is still on Tylenol all the time with Nicosan, then I would recommend switching to the Children's dose (240mg) instead of the adult 350mg dose. Personally once Nicosan starts working for her, I think her Tylenol intake would decrease rapidly. When I first started, I didn't know about this interaction, and I still took a lot of Vicodin/Tylenol and Norco. Now I still take Tylenol once in a while when I get period cramps or a headache, but haven't noticed any changes in my labs or my physiological response. I don't think it will hurt once in a while. But if after being on Nicosan for several weeks, she's still chronically using the Tylenol products, then definitely have to switch to the Children's dose.
The only thing that I've found regarding Tylenol and Nicosan is that Tylenol increases the concentration of Nicosan 'en vivo'. This means that Tylenol increases or enhances the Nicosan effect. If she is still on Tylenol all the time with Nicosan, then I would recommend switching to the Children's dose (240mg) instead of the adult 350mg dose. Personally once Nicosan starts working for her, I think her Tylenol intake would decrease rapidly. When I first started, I didn't know about this interaction, and I still took a lot of Vicodin/Tylenol and Norco. Now I still take Tylenol once in a while when I get period cramps or a headache, but haven't noticed any changes in my labs or my physiological response. I don't think it will hurt once in a while. But if after being on Nicosan for several weeks, she's still chronically using the Tylenol products, then definitely have to switch to the Children's dose.
Monday, August 31, 2009
Nicosan Skeptics---I need your story!
I got a question from one of my readers that I couldn't answer. I used to be a skeptic and require facts, figures and statistics; but I think I'm too much of a Nicosan believer to be able to answer this.
My baby is also on NICOSAN. Can't dream of taking her off it!!!! My elder sister has an 8-yr old who has been on hydroxyurea for the last 6 years. She has had two major strokes affecting the right side and a minor one affecting the right shoulder. I have tried time and again to get her to allow her daughter take NICOSAN but she's refused. Unlike me who leans more to herbal she prefers {Westernized} real medicine which comes with statistical information on success rates, what the medicine actually targets in the body etc. Would you by any chance know of anyone who has had a similar experience and moved to NICOSAN with successful results? I really need to get her on this.So to other users out there...how did you cross the great divide from Westernized 'real' medicine to herbal remedies and Nicosan? Drop me an email or share your comments.
Sunday, August 30, 2009
Nicosan Tingles
The next few days, I'll be posting answers and questions that I've been getting from my darling readers about Nicosan and Sickle cell. I seem to be getting alot of similar questions, so I figure if I post them here, more people can learn from the same group of questions. If you have any advice, please feel free to leave a comment. We can all learn from each other.
I never had that effect, but one of the other users did mention this to me a while back. He has Sickle cell Thallasemia though, so I wasn't sure if it was something that more people went through or if it was specific to his disease process. He stated that he had minor pain in his hands, feet, and legs, but it was nothing like sickle cell pain, more like L1s (2-4). And that he kept taking it anyway, and after about 4 weeks, he didn't have any pain at all. We figured that it had something to do with the sickle cells that are already in your body. Since Nicosan configures the red blood cells from the sickle shape to normal cells, perhaps the 'sickle cells' in the smaller veins and capillaries need more time to get properly configured. Let me know if this persists after another couple of weeks.
Did the Nicosan seem to cause little tingles of pain for the first 2-3 weeks of taking it before things got better? Not huge pain, but tingles of minor pain...The pain has been similar for me--the first 2 weeks it was minor pain in my legs only which was sorta annoying, then the 3rd week (this week), it is only pain in my knees...The pain isn't crisis '10' pain but annoying enough to take a Motrin...It is about a '6' pain on the scale.
It passes after awhile, but I've learned to take the Nicosan at night so that I can go right to bed and not have to function all day and notice the slight pain....I'm glad to know that the Nicosan changes the shape of the red blood cells to normal. That is a blessing to know.
It does something to my breathing too, as if I can breathe a little better and relax...I noticed that from the very first day. It seems to be regulating everything I'm hoping. Overall I have not had any major '8-10' pain since being on Nicosan, and have cut back on my Motrin usage so I'm very happy about that!
I never had that effect, but one of the other users did mention this to me a while back. He has Sickle cell Thallasemia though, so I wasn't sure if it was something that more people went through or if it was specific to his disease process. He stated that he had minor pain in his hands, feet, and legs, but it was nothing like sickle cell pain, more like L1s (2-4). And that he kept taking it anyway, and after about 4 weeks, he didn't have any pain at all. We figured that it had something to do with the sickle cells that are already in your body. Since Nicosan configures the red blood cells from the sickle shape to normal cells, perhaps the 'sickle cells' in the smaller veins and capillaries need more time to get properly configured. Let me know if this persists after another couple of weeks.
Saturday, August 29, 2009
Daily Pain Stops with Nicosan
I must say that I haven't had Nicosan in about three weeks and have noticed the difference. I didn't realize how much even the simplest pain was a part of my everyday life until Nicosan. I really hope they dont stop making this drug in my lifetime. It has really helped. ~JM
SCW: I was surprised at the effect myself. I stop taking it once in a while, just for about a week or so, to see if I still have pain (or if my some miracle, I'm cured!;). Sure enough, the pain comes back usually by the 5th day. Now I take it generally every day or every other day. I love not having daily pain!
SCW: I was surprised at the effect myself. I stop taking it once in a while, just for about a week or so, to see if I still have pain (or if my some miracle, I'm cured!;). Sure enough, the pain comes back usually by the 5th day. Now I take it generally every day or every other day. I love not having daily pain!
Monday, August 24, 2009
PPH Sickle Cell Drug Trial Stopped
NIH stops trial of drug for sickle cell patients
July 28, 2009 | 10:46 am
The National Institutes of Health has halted a clinical trial using sildenafil to treat pulmonary hypertension in sickle cell patients after preliminary results showed that the drug was actually increasing sickle crises rather than reducing them.
Sildenafil, sold by Pfizer as Cialis for erectile dysfunction and as Revatio for treating pulmonary hypertension in otherwise healthy adults, relaxes blood vessels, helping to prevent blockages that induce painful sickle crises, which can resemble heart attacks. The new study, sponsored by the NIH's National Heart, Lung and Blood Institute, was designed to show that it would work in adults with sickle cell disease as well. About 30% of sickle cell patients suffer from pulmonary hypertension, a debilitating condition of high blood pressure in the arteries thatcarry blood to the lungs. It can lead to heart failure and death. Researchers tested the patients' ability to walk rapidly on a treadmill for six minutes -- hence the name Walk-PHaSST for the trial.
With nearly a year left to go on the trial, officials halted it when a preliminary study of 33 patients who had completed at least 16 weeks of treatment showed that they were significantly more likely to develop painful sickle crises during the test. About 38% of those receiving the drug had sickle crises, compared with 8% of those receiving a placebo. No deaths were observed.
Because the complications observed in the trial were specific to sickle cell patients, researchers said there is no risk to others using the drug for pulmonary hypertension. The agency recommended that physicians treating sickle cell patients off-label with the drug taper it off over a period of three to seven days to avoid problems associated with abrupt withdrawal.
-- Thomas H. Maugh II from Los Angeles Times
July 28, 2009 | 10:46 am
The National Institutes of Health has halted a clinical trial using sildenafil to treat pulmonary hypertension in sickle cell patients after preliminary results showed that the drug was actually increasing sickle crises rather than reducing them.
Sildenafil, sold by Pfizer as Cialis for erectile dysfunction and as Revatio for treating pulmonary hypertension in otherwise healthy adults, relaxes blood vessels, helping to prevent blockages that induce painful sickle crises, which can resemble heart attacks. The new study, sponsored by the NIH's National Heart, Lung and Blood Institute, was designed to show that it would work in adults with sickle cell disease as well. About 30% of sickle cell patients suffer from pulmonary hypertension, a debilitating condition of high blood pressure in the arteries thatcarry blood to the lungs. It can lead to heart failure and death. Researchers tested the patients' ability to walk rapidly on a treadmill for six minutes -- hence the name Walk-PHaSST for the trial.
With nearly a year left to go on the trial, officials halted it when a preliminary study of 33 patients who had completed at least 16 weeks of treatment showed that they were significantly more likely to develop painful sickle crises during the test. About 38% of those receiving the drug had sickle crises, compared with 8% of those receiving a placebo. No deaths were observed.
Because the complications observed in the trial were specific to sickle cell patients, researchers said there is no risk to others using the drug for pulmonary hypertension. The agency recommended that physicians treating sickle cell patients off-label with the drug taper it off over a period of three to seven days to avoid problems associated with abrupt withdrawal.
-- Thomas H. Maugh II from Los Angeles Times
Saturday, August 22, 2009
Tips for Flying with Sickle Cell
So to all my darling warriors that are fretting about their first long trip in a plane...here a a few tips to keep in mind.
Layovers: Do you have a layover? If not, make sure that you stretch your legs periodically to prevent leg cramps. When booking, I always recommend at least one layover for sickle cell warriors. Remember, high altitudes=less oxygen concentration=the possibility of a crises. So heading to the ground for even 20 minutes and getting some normal atmospheric air and pressure helps immensely.
Stretch: I usually walk 5-10 minutes for every hour of my flight, from one side of the plane to the other. This helps to reduce the possibility of getting clots or your legs cramping up. If it's a short flight (less than 2 hours), you might be okay, but anything longer than that...stretching is the key.
Accessibility: Have your pain meds easily accesibile in case you need them. It's very frustrating trying to direct a flight attendant where your pain meds are as you are writhing about in pain. Pack your pain meds in your purse or laptop. Have them with you at all times.
Hydrate: Hydrate, hydrate, hydrate. You can never have too much water. Skip the caffenated drinks and alcohol, both of them are known to dehydrate you.
Snacks: Some flights don't feed you at all, and it's always good to have something in your stomach before you take some pain medication. That way you won't have to fight nausea on top of everything else.
Oxygen: Make sure that your airline has onboard oxygen, they usually do for emergencies, but sometimes, esp if it's a long flight, it's nice to know ahead of time if they have it.
Read my tale of flying here. I must say I learned my lesson after that.
Layovers: Do you have a layover? If not, make sure that you stretch your legs periodically to prevent leg cramps. When booking, I always recommend at least one layover for sickle cell warriors. Remember, high altitudes=less oxygen concentration=the possibility of a crises. So heading to the ground for even 20 minutes and getting some normal atmospheric air and pressure helps immensely.
Stretch: I usually walk 5-10 minutes for every hour of my flight, from one side of the plane to the other. This helps to reduce the possibility of getting clots or your legs cramping up. If it's a short flight (less than 2 hours), you might be okay, but anything longer than that...stretching is the key.
Accessibility: Have your pain meds easily accesibile in case you need them. It's very frustrating trying to direct a flight attendant where your pain meds are as you are writhing about in pain. Pack your pain meds in your purse or laptop. Have them with you at all times.
Hydrate: Hydrate, hydrate, hydrate. You can never have too much water. Skip the caffenated drinks and alcohol, both of them are known to dehydrate you.
Snacks: Some flights don't feed you at all, and it's always good to have something in your stomach before you take some pain medication. That way you won't have to fight nausea on top of everything else.
Oxygen: Make sure that your airline has onboard oxygen, they usually do for emergencies, but sometimes, esp if it's a long flight, it's nice to know ahead of time if they have it.
Read my tale of flying here. I must say I learned my lesson after that.
Friday, August 21, 2009
Shutting it Down
I know that I shouldn't let a few empty barrels ruin the party, but some of the people that are ordering Nicosan are driving me bonkers. All I wanted was to help people, not get harassed on the regular, get scammed, or get my Paypal account in the negative because someone chose to reverse their transaction. I'm seriously considering leaving the Nicosan trafficking to those that are more experienced and business savvy. I can't deal with this stress...it's really not worth it.
I found something that has changed my life, and I wanted to share it with everyone that was suffering from the same affliction that I was. I thought that spreading the good news would help other people have pain free and crises free lives.
Instead I find myself embroiled in drama and bullshit that I have neither the patience or time to deal with. This is not my business. I'M NOT MAKING MONEY FROM THIS! It's sapping too much of my energy to deal with bandying constant insults from virtual strangers. I've gotten to the phase where I want to shut the whole operation down.
Norio is telling me not to be hasty, that I'm helping people, even if I can't see the wood through the trees. But I really don't think I can take anymore of this drama. It's not worth it. I'm willing to pass the baton on.
I found something that has changed my life, and I wanted to share it with everyone that was suffering from the same affliction that I was. I thought that spreading the good news would help other people have pain free and crises free lives.
Instead I find myself embroiled in drama and bullshit that I have neither the patience or time to deal with. This is not my business. I'M NOT MAKING MONEY FROM THIS! It's sapping too much of my energy to deal with bandying constant insults from virtual strangers. I've gotten to the phase where I want to shut the whole operation down.
Norio is telling me not to be hasty, that I'm helping people, even if I can't see the wood through the trees. But I really don't think I can take anymore of this drama. It's not worth it. I'm willing to pass the baton on.
Thursday, August 20, 2009
Speak Up!
A friend on the Ning Sickle Cell forum is working with doctors at Johns Hopkins to develop training for medical students on sickle cell treatment & care. They want to know what issues we're having with health care treatment.
This is our chance to get on the soapbox and let our voices be heard. So please either respond via comments or send me an email answering the following questions:
(1) What issues are you having with self-management at home?
(2) With health care providers? (doctors, nurses, clinics)?
(3) With pain medication (or lack of proper medication)?
(4) Anything else that pisses you off about healthcare treatment of people with SCD.
Doctor's are listening and now it's your chance to tell them your thoughts.
Let's do it!
This is our chance to get on the soapbox and let our voices be heard. So please either respond via comments or send me an email answering the following questions:
(1) What issues are you having with self-management at home?
(2) With health care providers? (doctors, nurses, clinics)?
(3) With pain medication (or lack of proper medication)?
(4) Anything else that pisses you off about healthcare treatment of people with SCD.
Doctor's are listening and now it's your chance to tell them your thoughts.
Let's do it!
Monday, August 17, 2009
Information about Nicosan
Informational Release from Xechem Nigeria. This is old, but I just came across it so I figured it would help some answer all their questions.
NICOSAN™ is a non-toxic, Phyto-pharmaceutical, product for the treatment of Sickle Cell Disease (SCD). NicosanTM is obtained from the mixture of four Nigerian plant materials e.g. Piper guineese (Seeds), Pterocarpus Osun (Stems), Eugenia caryophyllum (Fruits), Sorghum bi-color (Leaves), in a standard ratio which produce a hygroscopic, reddish-brown powder with a pungent odor.
In July, 2002, Xechem acquired exclusive worldwide license from the Ministry of Health, Federal Government of Nigeria to develop and market NICOSAN™ (HEMOXIN™ in the US).
NICOSAN™ (HEMOXIN™) was shown to be a safe and efficacious medicine for the management of patients with Sickle Cell Disease. As published in the May 2003 issue of the British Journal of Hematology, Dr.Toshio Asakura and colleagues from Children's Hospital of Philadelphia (CHOP), USA and the University of Pennsylvania demonstrated the anti-sickling effects of NICOSAN™ (HEMOXIN™) in transgenic mice.
The quality and standardization of the medicine has been tested and proved by High Performance Liquid Chromatography (HPLC) and bioassay.
NICOSAN™ Characteristics
A 100 % Nigerian indigenous Product.
Product available in Capsules, pleasant tasting with no known side effects.
Dose determined and Clinical Trials conducted.
The pricing strategy will favor the poor and underprivileged.
BENEFITS OF NICOSAN™
1. It is used for prophylactic management of sickle cell disease (SCD).
2. It has potent anti sickling effect on sickled erythrocytes, obtained from patients with SCD and on transgenic mice that produced human sickle hemoglobin, thus useful in preventing painful crisis experienced by SCD patients.
3. It reduces hypoxic stress experienced by SCD patients (due to trapping of sickle cell in lungs), drastically.
4. It removes the incidence of blood transfusion in SCD PATIENTS.
5. It prevents clinical sequel (i.e. painful crisis).
6. It prevents ocular damage
PRESENTATION
NicosanTM comes in two different strengths:
250mg (Children Dose)
350mg (Adults Dose)
It is presented as 30 capsules, packaged in 60ml, HDPE bottles
DOSAGE
Adult Dose:
One (1) capsule (350mg) daily at meal time with water.
Child Dose:
One (1) capsule (250mg) daily at meal time with water.
SIDE EFFECTS
Rare:
Mild non- itching muscular rash
Nausea if taken on an empty stomach
Mild headache.
TOXICITY
- Non Toxic
- Higher doses of 2000mg 5000mg/kg LD50 (A lethal Dose at which 50% of the population of experimental mice were expected to die), there was no death recorded.
- No kidney or liver damage was observed both in human volunteers and in experimental animals during and after the clinical trials, the drug is safe in humans at the
recommended dose.
CONTRAINDICATION
There is no known contra-indication in both mice and human to all the active ingredients. The potash used for extraction and the binding agent (Lactose) are safe for human consumption.
No health hazard was observed, when administered in the proper dosage form.
INTERACTION
It can be safely combined, with other drugs, even the cytotoxic drugs like Indinavir, Zidovudine, Lamivudine and Vevirapine used in the management of HIV/AIDS.
Paracetamol (Tylenol) was found to increase the invivo concentration of NicosanTM care must be taken, when they are co administered.
TERATOGENECITY
There is no known teratogenic effect produced by NicosanTM, even some pregnant women who opted (against clinician's advice) to continue taking NicosanTM had normal babies.
STORAGE CONDITION
To be stored in a dry clean place storage temperature is 25oc. Protect from moisture and humidity.
CONCLUSION
NICOSAN is an effective and safe drug of choice for the management of sickle cell disease (SCD).
WARNING
Keep out of reach of the children don't exceed the stated dose.
Let me know if you have any questions.
NICOSAN™ is a non-toxic, Phyto-pharmaceutical, product for the treatment of Sickle Cell Disease (SCD). NicosanTM is obtained from the mixture of four Nigerian plant materials e.g. Piper guineese (Seeds), Pterocarpus Osun (Stems), Eugenia caryophyllum (Fruits), Sorghum bi-color (Leaves), in a standard ratio which produce a hygroscopic, reddish-brown powder with a pungent odor.
In July, 2002, Xechem acquired exclusive worldwide license from the Ministry of Health, Federal Government of Nigeria to develop and market NICOSAN™ (HEMOXIN™ in the US).
NICOSAN™ (HEMOXIN™) was shown to be a safe and efficacious medicine for the management of patients with Sickle Cell Disease. As published in the May 2003 issue of the British Journal of Hematology, Dr.Toshio Asakura and colleagues from Children's Hospital of Philadelphia (CHOP), USA and the University of Pennsylvania demonstrated the anti-sickling effects of NICOSAN™ (HEMOXIN™) in transgenic mice.
The quality and standardization of the medicine has been tested and proved by High Performance Liquid Chromatography (HPLC) and bioassay.
NICOSAN™ Characteristics
A 100 % Nigerian indigenous Product.
Product available in Capsules, pleasant tasting with no known side effects.
Dose determined and Clinical Trials conducted.
The pricing strategy will favor the poor and underprivileged.
BENEFITS OF NICOSAN™
1. It is used for prophylactic management of sickle cell disease (SCD).
2. It has potent anti sickling effect on sickled erythrocytes, obtained from patients with SCD and on transgenic mice that produced human sickle hemoglobin, thus useful in preventing painful crisis experienced by SCD patients.
3. It reduces hypoxic stress experienced by SCD patients (due to trapping of sickle cell in lungs), drastically.
4. It removes the incidence of blood transfusion in SCD PATIENTS.
5. It prevents clinical sequel (i.e. painful crisis).
6. It prevents ocular damage
PRESENTATION
NicosanTM comes in two different strengths:
250mg (Children Dose)
350mg (Adults Dose)
It is presented as 30 capsules, packaged in 60ml, HDPE bottles
DOSAGE
Adult Dose:
One (1) capsule (350mg) daily at meal time with water.
Child Dose:
One (1) capsule (250mg) daily at meal time with water.
SIDE EFFECTS
Rare:
Mild non- itching muscular rash
Nausea if taken on an empty stomach
Mild headache.
TOXICITY
- Non Toxic
- Higher doses of 2000mg 5000mg/kg LD50 (A lethal Dose at which 50% of the population of experimental mice were expected to die), there was no death recorded.
- No kidney or liver damage was observed both in human volunteers and in experimental animals during and after the clinical trials, the drug is safe in humans at the
recommended dose.
CONTRAINDICATION
There is no known contra-indication in both mice and human to all the active ingredients. The potash used for extraction and the binding agent (Lactose) are safe for human consumption.
No health hazard was observed, when administered in the proper dosage form.
INTERACTION
It can be safely combined, with other drugs, even the cytotoxic drugs like Indinavir, Zidovudine, Lamivudine and Vevirapine used in the management of HIV/AIDS.
Paracetamol (Tylenol) was found to increase the invivo concentration of NicosanTM care must be taken, when they are co administered.
TERATOGENECITY
There is no known teratogenic effect produced by NicosanTM, even some pregnant women who opted (against clinician's advice) to continue taking NicosanTM had normal babies.
STORAGE CONDITION
To be stored in a dry clean place storage temperature is 25oc. Protect from moisture and humidity.
CONCLUSION
NICOSAN is an effective and safe drug of choice for the management of sickle cell disease (SCD).
WARNING
Keep out of reach of the children don't exceed the stated dose.
Let me know if you have any questions.
Sunday, August 16, 2009
Telling Your Job You Have Sickle Cell
Okay, for starters I've learned the hard way that it's always good to tell your job that you have sickle cell BEFORE you end up in the hospital for a week.
I used to work as a personal assistant, and it was a great job that used my organizational capabilities to the max! I fell sick 2 months into the job, and was in the hospital for a little over a week, and at home the rest of the 2nd week recuperating. Needless to say, when I got back, there was a ton of work to catch up on and my boss was not pleased. She wasn't mean about it, but she stated quite truthfully that if she had known that I would disappear all of a sudden she would never have hired me, or would have hired an assistant to fill in when I was out. I learned a great lesson that day, and ever since then, I've been upfront and honest to my employers and potential employers about sickle cell.
Usually, I don't say anything until the end of the 2nd interview (the one with your direct boss), when the interviewer asks me if I have any questions. Then I state, "Just so you know, I have sickle cell anemia. It's a hereditary condition that flares up once in a while. It makes me have to use my sick days a few times a year and sometimes, when it gets real bad I have to go to the hospital."
That's it. Nice, simple and honest. This usually opens up the ground for them to ask more questions, like what exactly is sickle cell anemia, and when was the last time I was sick. I usually only tell my direct supervisor about the sickle cell, but post-crises, I tell anyone else that asks. I'm not asking for sympathy...I'm trying to spread the word and shake the ignorance and mystique that surrounds sickle cell.
Now I work in the medical field, so people 'get it' more. However, this same speech has been used to interview for an office job, a mall job and a writing gig...so it can be tailored to fit your profession as well. I've never NOT gotten hired because I told them I have sickle cell (knock on wood).
I understand the mentality of trying to hide that you have moments of vulnerability from your potential employers. But sometimes hiding the condition ends up doing more harm than good. Employers love it when they get the full idea of the person they are hiring (so states my HR sister Ms. Diva). And when they do find out later, they might end up resenting you for hiding it, and since they legally can't fire you for being sick, they make your job more and more difficult so you eventually have to quit or get sacked for something totally retarded.
Remember, if you had diabetes, lupus or MS, it would not be a huge deal to tell your boss that this is my condition, and these are my limitations. So apply that same principle to your job now. Honesty is the best policy.
I used to work as a personal assistant, and it was a great job that used my organizational capabilities to the max! I fell sick 2 months into the job, and was in the hospital for a little over a week, and at home the rest of the 2nd week recuperating. Needless to say, when I got back, there was a ton of work to catch up on and my boss was not pleased. She wasn't mean about it, but she stated quite truthfully that if she had known that I would disappear all of a sudden she would never have hired me, or would have hired an assistant to fill in when I was out. I learned a great lesson that day, and ever since then, I've been upfront and honest to my employers and potential employers about sickle cell.
Usually, I don't say anything until the end of the 2nd interview (the one with your direct boss), when the interviewer asks me if I have any questions. Then I state, "Just so you know, I have sickle cell anemia. It's a hereditary condition that flares up once in a while. It makes me have to use my sick days a few times a year and sometimes, when it gets real bad I have to go to the hospital."
That's it. Nice, simple and honest. This usually opens up the ground for them to ask more questions, like what exactly is sickle cell anemia, and when was the last time I was sick. I usually only tell my direct supervisor about the sickle cell, but post-crises, I tell anyone else that asks. I'm not asking for sympathy...I'm trying to spread the word and shake the ignorance and mystique that surrounds sickle cell.
Now I work in the medical field, so people 'get it' more. However, this same speech has been used to interview for an office job, a mall job and a writing gig...so it can be tailored to fit your profession as well. I've never NOT gotten hired because I told them I have sickle cell (knock on wood).
I understand the mentality of trying to hide that you have moments of vulnerability from your potential employers. But sometimes hiding the condition ends up doing more harm than good. Employers love it when they get the full idea of the person they are hiring (so states my HR sister Ms. Diva). And when they do find out later, they might end up resenting you for hiding it, and since they legally can't fire you for being sick, they make your job more and more difficult so you eventually have to quit or get sacked for something totally retarded.
Remember, if you had diabetes, lupus or MS, it would not be a huge deal to tell your boss that this is my condition, and these are my limitations. So apply that same principle to your job now. Honesty is the best policy.
Monday, August 10, 2009
The Crazy Things I Say with Narcotics
On the Sickle cell Ning forum, there is a great discussion about the crazy things that Sickle Cell Warriors say while they are on narcotics. Personally that hasn't happened to me in a while, but I do remember the days of horrendous hallucinations and crazy conversations. Whoever was at my bedside at the moment bore the brunt of it, and to my sisters, this was just perfect teasing material for later. I rarely remember what I said or when I said it, I'm so far either in pain or out of it, but my sisters still crack jokes on me till this day.If not for the fact that my family treated it so lightheartedly, I don't think I would have been able to cope with spewing out secrets, random thoughts and whatever popped into my head while under the influence. I'm sure that some have had to go through periods of shame, embarrassment or insecurity due to this. But you know what? It's okay!
I've said some crazy things on drugs. My man states that he loves grilling me when I'm looped up because then 'I really get to know what you feel about issues!' Yep, he does take advantage of my no-filter mode...and since I don't imbibe alcohol, that's pretty much the only time you will get me with my guards down.
The most outrageous thing that I said *(which I didn't remember and deny to this day!), was that I was a hired assassin and killed people with my violin case a la Antonio Banderas in Desperado...lol. I also said I was the Princess of Egypt, and named my seven older brothers in order...threatening that my older brothers were warriors and would come beat up the nurses for causing me pain. (As you can see, I tend to have quite violent hallucinations!)...
Although I do get slightly embarrassed when I'm teased about all the crazy stuff I've said, I just roll with it...it's all part of the experience I guess. I mean, if I let it get to me, then I would become a neurotic mess each time I was faced with the thought of having to take painkillers.
Just roll with it. Let it go. It's not a big deal and comes with the territory. Or else, slap some duct tape on your mouth right after you take pain meds. ;)
Tuesday, July 28, 2009
Being Sick in Nigeria vs Sick in America
As a transcontinental transplant, I experienced alot of dramatic changes in how I was treated as a sickle cell patient in Nigeria vs my treatment in America.
Those of you who have read the archives know that although I was born in Nigeria, I only lived there from birth to 4 years old, and then from 10 to 18 years old. During those tween years, I was sick enough to need going to the hospital a few times. I had crises probably a max of 3 times a year, and it was usually during some highly stressful event like my birthday, going to camp, high school graduation or anything that I was under extreme stress and not taking care of myself.
I've gone to different hospitals, both public and private in Nigeria, and the care that I got varied from hospital to hospital, but I never felt stigmatized. The nurses gave me pain medication as ordered on time, and the nurses never gave me placebos or acted like they didn't care. If they had given me a dose and I was still in pain 30 minutes later, they would call the doctor on my behalf as a PATIENT ADVOCATE. If I was in so much pain that I was crying and unable to cope, they would come to the bedside, hold my hand, give me warm compresses or menthol around my knees and keep calling the doctor until they got results. They would help me get washed up, get dressed, force me to eat, even if I was hurting so much that I couldn't...and even though I resented this, my hospitalizations usually never exceeded 5 days.
Fast forward to America. My parents actually pooled all their resources into getting me to the USA, thinking that I would have access to the best medical care for my condition. Here I was, in the land of dreams, the country where people from all over the world pray to come to.
When I lived in southern Michigan and in Huntsville, AL; I was treated well. The doctors/nurses had very limited experience with sickle cell, but they had lots of compassion. They worked with me to develop the best care plan, and I went to the closest hospital whenever I had a crises, my records always transferred however, because it was the same hospital system. I felt like a regular patient, and never felt punished because of my condition.
Until I moved to Baltimore, Maryland, an area that is populated with lots of African-Americans, an area that has access to the best research in sickle cell, one of the best comprehensive sickle cell centers and a high demographic of sickle cell patients. These were part of my reasons for moving to Maryland...had I known, I should have just stayed right where I was in MI.
In Maryland, I got the worst treatment that I've ever had in my life. I was stigmatized, ignored, insulted and abused. In the ER of the hospital where I worked as a nurse; I was discharged still in pain, with no access to a wheelchair, no family member present and having to crawl to the waiting room on my hands and knees waiting for 45 minutes until my sister could come pick me up. I had many close calls with death in Maryland, once having to have a total blood transfusion (hemapharesis), and once slipping into a coma that lasted several days. When I was in the ICU, I was treated very well, but as soon as I got to the Med-surg floor, I once again achieved pariah status.
California was an extension of my Maryland experience...but the medical professionals in Cali were by far some of the most callous people that I've ever encountered. It was in a prominent California hospital that a nurse came in and told me to stop crying "You've had sickle cell all your life, you should be used to the pain by now." It was in another Emergency room that the doctor had me in pain for 11 hours because she refused to increase my dose, having me on 2mg of Morphine every 4 hours (are you effing kidding me?). Her shift ended, and it was only then that I got relief.
I could go on and on and on, and I'm sure that many Sickle Cell Warriors all over the nation can tell you the same thing. When a patient has cancer, lupus or multiple sclerosis; they are given the best possible pain treatment plan. When a patient has sickle cell---they are treated like the bacteria on top of pond scum---and made to feel like they don't matter, they are worthless and their pain doesn't count.
When I see or hear of nurses diverting pain medications, giving placebos in place of real painkillers and ignoring their patient's cries of agony, it makes my blood boil over. So yeah, if we are cynical, jaded, bitter and mistrustful of the medical system in the United States...I'm sure you now can understand.
Those of you who have read the archives know that although I was born in Nigeria, I only lived there from birth to 4 years old, and then from 10 to 18 years old. During those tween years, I was sick enough to need going to the hospital a few times. I had crises probably a max of 3 times a year, and it was usually during some highly stressful event like my birthday, going to camp, high school graduation or anything that I was under extreme stress and not taking care of myself.
I've gone to different hospitals, both public and private in Nigeria, and the care that I got varied from hospital to hospital, but I never felt stigmatized. The nurses gave me pain medication as ordered on time, and the nurses never gave me placebos or acted like they didn't care. If they had given me a dose and I was still in pain 30 minutes later, they would call the doctor on my behalf as a PATIENT ADVOCATE. If I was in so much pain that I was crying and unable to cope, they would come to the bedside, hold my hand, give me warm compresses or menthol around my knees and keep calling the doctor until they got results. They would help me get washed up, get dressed, force me to eat, even if I was hurting so much that I couldn't...and even though I resented this, my hospitalizations usually never exceeded 5 days.
Fast forward to America. My parents actually pooled all their resources into getting me to the USA, thinking that I would have access to the best medical care for my condition. Here I was, in the land of dreams, the country where people from all over the world pray to come to.
When I lived in southern Michigan and in Huntsville, AL; I was treated well. The doctors/nurses had very limited experience with sickle cell, but they had lots of compassion. They worked with me to develop the best care plan, and I went to the closest hospital whenever I had a crises, my records always transferred however, because it was the same hospital system. I felt like a regular patient, and never felt punished because of my condition.
Until I moved to Baltimore, Maryland, an area that is populated with lots of African-Americans, an area that has access to the best research in sickle cell, one of the best comprehensive sickle cell centers and a high demographic of sickle cell patients. These were part of my reasons for moving to Maryland...had I known, I should have just stayed right where I was in MI.
In Maryland, I got the worst treatment that I've ever had in my life. I was stigmatized, ignored, insulted and abused. In the ER of the hospital where I worked as a nurse; I was discharged still in pain, with no access to a wheelchair, no family member present and having to crawl to the waiting room on my hands and knees waiting for 45 minutes until my sister could come pick me up. I had many close calls with death in Maryland, once having to have a total blood transfusion (hemapharesis), and once slipping into a coma that lasted several days. When I was in the ICU, I was treated very well, but as soon as I got to the Med-surg floor, I once again achieved pariah status.
California was an extension of my Maryland experience...but the medical professionals in Cali were by far some of the most callous people that I've ever encountered. It was in a prominent California hospital that a nurse came in and told me to stop crying "You've had sickle cell all your life, you should be used to the pain by now." It was in another Emergency room that the doctor had me in pain for 11 hours because she refused to increase my dose, having me on 2mg of Morphine every 4 hours (are you effing kidding me?). Her shift ended, and it was only then that I got relief.
I could go on and on and on, and I'm sure that many Sickle Cell Warriors all over the nation can tell you the same thing. When a patient has cancer, lupus or multiple sclerosis; they are given the best possible pain treatment plan. When a patient has sickle cell---they are treated like the bacteria on top of pond scum---and made to feel like they don't matter, they are worthless and their pain doesn't count.
When I see or hear of nurses diverting pain medications, giving placebos in place of real painkillers and ignoring their patient's cries of agony, it makes my blood boil over. So yeah, if we are cynical, jaded, bitter and mistrustful of the medical system in the United States...I'm sure you now can understand.
Thursday, July 23, 2009
Saturday, July 18, 2009
Oldest Person with Sickle Cell is 83
[NAME REDACTED BY REQUEST] is an eighty-two year old woman who may be one of the oldest American living with Sickle Cell Disease (SCD). She is an advocate of the disease which affects millions throughout the world and is particularly common among people with ancestors in sub-Saharan Africa, Saudi Arabia, India and Mediterranean countries such as Turkey, Greece, and Italy and Spanish-speaking regions of South America, Cuba and Central America.
Guess you'll live to be an Octogenarian too!
In the United States, Sickle Cell Disease affects more than seventy-two thousand people and about two million Americans carry the trait for SCD, a life threatening disease that creates unimaginable pain and suffering. Support is probably the most important factor in the life of the patient.
S.C.A.T.T. (Sickle Cell Action Through Technology) is geared towards helping to supplement the needs of patients who find themselves facing insurmountable health as well as financial challenges. Patients from around the country call for advice, or a word of encouragement.
Guess you'll live to be an Octogenarian too!
Thursday, July 16, 2009
In the Hospital in Pain
There is a great discussion over at the Ning Sickle cell board over coping when you are in the hospital in pain and doctors don't believe your pain and ask you what your doses of pain meds are, and when you tell them, they respond "Oh that's too high, that can't be right, I'm only going to give you half of that or less..."
Usually, they ignore whatever you say, and go by whatever they feel is right---which ends up leaving you in more pain, or have your pain and anxiety increase. One of our members detailed a very sad experience where she was admitted to the hospital and was in pain for 4 days!!! The doctor pretty much ignored all her requests for better pain management. I'm sure we all can relate to that in one form or another.
Remember, you have to be your own advocate!
If you are ever in a similar situation like this (and I hope you aren't), take a page from my book. I called the Operator, asked for the Quality Improvement or Risk Management office and left a very upset message. I also told the priest, a social worker and the Unit supervisor. I complained to everyone that came into my room and raised such a ruckus that eventually the CEO of the hospital and the Chief Medical Officer came down to apologize profusely. After that I was treated like a VIP and all my needs were taken care of. Remember, a squeaky wheel gets the most oil. Take that pain you are feeling, cry, scream and make everyone realize that you are there and in pain. It's usually when someone higher in the chain of command gets involved that stuff happens.
It's sad that people with cancer have their pain managed better and are treated with dignity. Sickle Cell warriors are treated like drug addicts, stigmatized, insulted and ignored. When is this every going to end? Grrrrrr!
Usually, they ignore whatever you say, and go by whatever they feel is right---which ends up leaving you in more pain, or have your pain and anxiety increase. One of our members detailed a very sad experience where she was admitted to the hospital and was in pain for 4 days!!! The doctor pretty much ignored all her requests for better pain management. I'm sure we all can relate to that in one form or another.
Remember, you have to be your own advocate!
If you are ever in a similar situation like this (and I hope you aren't), take a page from my book. I called the Operator, asked for the Quality Improvement or Risk Management office and left a very upset message. I also told the priest, a social worker and the Unit supervisor. I complained to everyone that came into my room and raised such a ruckus that eventually the CEO of the hospital and the Chief Medical Officer came down to apologize profusely. After that I was treated like a VIP and all my needs were taken care of. Remember, a squeaky wheel gets the most oil. Take that pain you are feeling, cry, scream and make everyone realize that you are there and in pain. It's usually when someone higher in the chain of command gets involved that stuff happens.
It's sad that people with cancer have their pain managed better and are treated with dignity. Sickle Cell warriors are treated like drug addicts, stigmatized, insulted and ignored. When is this every going to end? Grrrrrr!
Saturday, July 11, 2009
Sickle Cell costs $$$
A new study shows that the annual cost of medical care in the US for
people who suffer from sickle cell disease exceeds $1.1 billion. Check out the full article HERE.
They report that the average total cost of care per month per patient was $1,946, with substantial variation across age groups.
Total costs per patient-month were highest in adults, peaking at $2,853 per patient-month for patients aged 30 to 39, and lowest in children from birth through age 9, at $892 per patient-month.
On an annualized basis, the total cost of care ranged from $10,704 for children aged 0 to 9 years to $34,266 for the age 30 to 39 group.
"For an average patient with sickle cell disease reaching age 45, total undiscounted health care costs were estimated to reach $953,640," the researchers report in the American Journal of Hematology.
Roughly 80% of the costs were associated with inpatient care; 3.2% of costs were associated with emergency department (ED) use, 0.9% with physician visits, and 3.6% with prescription drugs. The remaining 11.7% of costs was from "other care," including home health and nursing home care.
Also, they note, "The high proportion of sickle cell disease costs associated with inpatient hospitalizations suggests that interventions that reduce complications such as pain crises could be cost-effective, even cost-saving."
Check out the full article HERE.
people who suffer from sickle cell disease exceeds $1.1 billion. Check out the full article HERE.
They report that the average total cost of care per month per patient was $1,946, with substantial variation across age groups.
Total costs per patient-month were highest in adults, peaking at $2,853 per patient-month for patients aged 30 to 39, and lowest in children from birth through age 9, at $892 per patient-month.
On an annualized basis, the total cost of care ranged from $10,704 for children aged 0 to 9 years to $34,266 for the age 30 to 39 group.
"For an average patient with sickle cell disease reaching age 45, total undiscounted health care costs were estimated to reach $953,640," the researchers report in the American Journal of Hematology.
Roughly 80% of the costs were associated with inpatient care; 3.2% of costs were associated with emergency department (ED) use, 0.9% with physician visits, and 3.6% with prescription drugs. The remaining 11.7% of costs was from "other care," including home health and nursing home care.
Also, they note, "The high proportion of sickle cell disease costs associated with inpatient hospitalizations suggests that interventions that reduce complications such as pain crises could be cost-effective, even cost-saving."
Check out the full article HERE.
Tuesday, July 7, 2009
Beautiful July...
Hello! What's up everyone?
I'm still here, chilling in Portland, enjoying wonderfully beautiful summer days. For the 4th, of course I hit up the waterfront and did the fireworks thing...it wasn't as spectacular as last year (dratted economic crises!), but it was decent.
When I was leaving my house that hot summer afternoon, my friend asked me why I was carrying my bulky sweater with me. Later that night as she shivered in the arms of her beau, I wrapped myself in my blanket and sweater, comfortable and warm. I guess having sickle cell has taught me to always be prepared for the cold!
On the Nicosan front have no fear peoples. The winds of change and progress are making their way slowly but surely to us. Hopefully things in Nigeria with XECHEM will be resolved soon.
As you can see, my blogging has become once a week. If you have a question that you would like answered about sickle cell anemia, shoot me an email or leave a comment. I'm not expert, but I can only tell you how I've dealt, am dealing and coping with the issues that SSA brings.
Ciao!!
I'm still here, chilling in Portland, enjoying wonderfully beautiful summer days. For the 4th, of course I hit up the waterfront and did the fireworks thing...it wasn't as spectacular as last year (dratted economic crises!), but it was decent.
When I was leaving my house that hot summer afternoon, my friend asked me why I was carrying my bulky sweater with me. Later that night as she shivered in the arms of her beau, I wrapped myself in my blanket and sweater, comfortable and warm. I guess having sickle cell has taught me to always be prepared for the cold!
On the Nicosan front have no fear peoples. The winds of change and progress are making their way slowly but surely to us. Hopefully things in Nigeria with XECHEM will be resolved soon.
As you can see, my blogging has become once a week. If you have a question that you would like answered about sickle cell anemia, shoot me an email or leave a comment. I'm not expert, but I can only tell you how I've dealt, am dealing and coping with the issues that SSA brings.
Ciao!!
Thursday, June 25, 2009
Seizing the Day...
Hello everyone!
How are you enjoying the summer? I'm doing great, having all kinds of fun in beautiful Portland. Summer is the only time that it's beautiful and not raining in Portland, so I might as well savor it right?
I've started my exercise regimen again and this time I'm super dedicated. I'm doing a mix of yoga on alternate days with strength training and aerobics. I want to throw in some pilates as well, but I will be building up to that.
I read this super awesome book by Amy Dubois Barnett that I would love to recommend to the ladies in the house. It's titled "Get Yours" and it's an inspirational/self help that encourages you to eliminate aspects of your life that don't make you happy and really set goals and achieve them. I'm working on my affirmation list right now (will share soon) and it's inspired me to do more and clean up shop.
You can be happy in your life no matter what situation you are in, because happiness begins from within. I've met so many people with sickle cell that are the happiest people, sure they have pain, but they are radiant and full of life. I know that it can be hard sometimes when the pain gets you down, and when the negativity of the hospital admissions, and your family stress weighs on you. But part of being a Warrior is that you have to be able to deal with all the stress, and come out on top, ready to fight another day.
Please seize the day and stay happy. Find things that make you happy, take time out for you, and set goals for yourself. Sometimes the only goal that I have is to clean up a room in the house, or wake up early...it doesn't matter what your goals are; the main thing is that you are doing something everyday to accomplish them.
Okay, I'm getting off the soapbox now...off to yoga...ciao!
How are you enjoying the summer? I'm doing great, having all kinds of fun in beautiful Portland. Summer is the only time that it's beautiful and not raining in Portland, so I might as well savor it right?
I've started my exercise regimen again and this time I'm super dedicated. I'm doing a mix of yoga on alternate days with strength training and aerobics. I want to throw in some pilates as well, but I will be building up to that.
I read this super awesome book by Amy Dubois Barnett that I would love to recommend to the ladies in the house. It's titled "Get Yours" and it's an inspirational/self help that encourages you to eliminate aspects of your life that don't make you happy and really set goals and achieve them. I'm working on my affirmation list right now (will share soon) and it's inspired me to do more and clean up shop.
You can be happy in your life no matter what situation you are in, because happiness begins from within. I've met so many people with sickle cell that are the happiest people, sure they have pain, but they are radiant and full of life. I know that it can be hard sometimes when the pain gets you down, and when the negativity of the hospital admissions, and your family stress weighs on you. But part of being a Warrior is that you have to be able to deal with all the stress, and come out on top, ready to fight another day.
Please seize the day and stay happy. Find things that make you happy, take time out for you, and set goals for yourself. Sometimes the only goal that I have is to clean up a room in the house, or wake up early...it doesn't matter what your goals are; the main thing is that you are doing something everyday to accomplish them.
Okay, I'm getting off the soapbox now...off to yoga...ciao!
Saturday, June 20, 2009
Juneteenth
Happy Juneteenth everyone!
I'm up bright and early because Norio is in charge of organizing the music for the Juneteenth festivities here in Portland. On top of that, he's also performing! It's going to be a fun, interesting day...
Hope it doesn't rain!
I'm up bright and early because Norio is in charge of organizing the music for the Juneteenth festivities here in Portland. On top of that, he's also performing! It's going to be a fun, interesting day...
Hope it doesn't rain!
Friday, June 19, 2009
Global Sickle Cell Awareness Day
The United Nations and the World Health Organization has declared June 19th World Sickle Cell Awareness Day!! We have our own day y'all.
Congratulations! Right now there is a huge festival in New York (I will be posting info in case you can make it), Cayman Islands, the ATL and all over the world.
Please continue in your efforts for increased knowledge, less stigmatization and increased public awareness with sickle cell. Every little mind that you open helps. You would be surprised how much ignorance is out there. Remember to also wear a touch of something Red. Knowing our genotype, creating an enabling environment medically and socially can also help to spread awareness.
Hug a Sickle Cell Warrior today; show your support and love!
Congratulations! Right now there is a huge festival in New York (I will be posting info in case you can make it), Cayman Islands, the ATL and all over the world.
Please continue in your efforts for increased knowledge, less stigmatization and increased public awareness with sickle cell. Every little mind that you open helps. You would be surprised how much ignorance is out there. Remember to also wear a touch of something Red. Knowing our genotype, creating an enabling environment medically and socially can also help to spread awareness.
Hug a Sickle Cell Warrior today; show your support and love!
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