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
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