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Monique - posted on 11/13/2008 ( 9 moms have responded )

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Hi and thanks for joining the group, now I have someone that is going through the same thing I am. I have been dealing with sickle cell for over 30 years now. I have 2 children ages 14 & 12. I am in pain on a daily basis and I have atleast 4-6 crisises a year, sometimes more. I was no longer able to work a fulltime job, so I started my own business. I am married to a very supportive husband and have been for years. I have taught my kids to be independant in order to take care of themselves and the home when I have to be admitted in the hospital. My last transfusion was in October-no fun- How long have you been dealing? And your kids? Hang in there . God got our back

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DeDra - posted on 04/28/2011

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Hi Oluremi! I'm so glad you shared your story! The group isn't as active as it could be, but we're trying to get there. I definitely go through those bouts of feeling unfit from time to time. When my 2yr old wants me to play in the snow or the rain, or even something as small as lay on the floor with him definitely makes me feel....limited compared to other mothers, especially now that I'm pregnant with my 2nd child (this time around seems a little harder than before) & because I'm older than most mothers who have kids the same age. But my fiancé is awesome, & I really do have a great support system that picks up the slack. For example, I tend to stay away from pools, but my son LOVES swimming. My sister, or my good friend takes my son swimming consistently during the summer, so I don't have to. It definitely takes a village, sometimes even more-so if you have an illness where you HAVE to depend on others sometimes, whether you want to or not.

Oluremi - posted on 04/27/2011

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Hello. I am 31 years old and remember my first crisis at the age of 4 or 5. Thank you for creating this blog. Lately, I try to cope with pain by going online to read other people's sickle cell stories. Knowing that I'm not alone is comforting.
Sickle cell has imposed several physical, emotional, spiritual and mental challenges. My latest emotional challenge is that I feel like I can't be the mother I want to be for my child. She will be two in June. Sometimes I look at her and think, she deserves to be running around in the park instead of watching tv all day while I try to ride out this crisis. I'm too weak to stand over the stove and give her a good home cooked meal so instead we pizza or take out. Raising a child requires so much patience and I have yet to find the patience needed to withstand sickle cell pain and a child throwing a temper tantrum.
Well like I said these are all challenges and I'm a sucker for a good challenge. I would love to hear how other SCD mothers have overcome feeling like an unfit mother.
On a positive note: I have a great husband. He has taught me a lot about being patient and putting mind over matter. He is an excellent father and provider. His belief in a solution to my suffering is greater than my own.

DeDra - posted on 12/15/2009

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I know no one has posted in some months, so I'm going to try and get it started again. M name is DeDra Flowers. I am 28 yrs old, and I have a 1 yr old son. I have a very supportive fiancee, whom I have been with for 15 years, my high school sweetheart. I suffer on a daily basis with pain, but it just comes with the territory. I am looking for other strong, positive, intelligent mothers with SCD who can understand me and offer support when needed. I am self employed, and I love being a mother. Please don't be afraid to contact me for any reason. I think we should stick together, because even though we don't personally know each other, we understand each other.

Angela - posted on 12/05/2009

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Hi Monique,

Have you ever heard of Ardyss International? They are a health & wellness company. I became a member after their natural products helped myself along with my friends and family. We have never been in better health and our doctors have stated this as they have taken some of us off our medicines or reduced medicine amounts. Ardyss sells all natural juices. Their most popular product is the Le'Vive juice. Le'Vive is a miracle! Le'Vive is made up of the power of the world’s top five antioxidant producing fruits in one product: Mangosteen, Noni, Acai Berry, Goji and Pomegranate. The combination of their juices leverages their synergic action in your body to the fullest, slowing your body's cells aging process while preventing the occurrence of terrible degenerative diseases. Basically unhealthy cells are rejuvenated and regardless of what health issue a person has they will no longer have it. Examples are diabetes, blood pressure & cholesterol problems, thyroid issues, fibromyalgia, sickle cell anemia, cancer, insomnia, migraines, flu, chronic fatigue etc. The health & wellness industry is going to hit the trillion-dollar mark in 2010 due to people going all natural & wanting to be healthier. There is nothing easier than drinking a few ounces of juice everyday instead of trying to swallow capsules or mixing powders in liquid. I was able to quit my job within a few months of working for Ardyss because of the rise of people wanting to be healthier & there is no selling involved, seriously. If you're interested in learning more about the products you can view my website at: www.ardysslife.com/bodybymoore. If your interested in the products or the business please let me know. Keep in mind you save 40% on all products if you become a member of Ardyss. An appointment with Ardyss will change your life.

Tootie - posted on 10/18/2009

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Hi My Name is Tootie and I was diagnosed @ 4months, when i had my first crisis. I am 30 now. I have the more severe case of SCD. I have a full hip replacement, i received @ 9 and i need my other hip relaced, i also need both shoulders replaced. I have whats called A-Vascularnercrosis which is eating my bones basicaly. They are deteriorating. I have a Wonderfull family,support system and and even Better Husban. Been together 11yrs married for 7. i have a 4yr old and my youngest just turned 1 on Oct.1st. and a 12yr old SD.

I take Morphine, 90mgs everyday twice and tylonal 4 for breakthrough. I'm hospitalized every 2 to 3 months for @least 3 days @ a time. I've never been able to work so I've always been @ home and now that i have children it's ok that i don't have a job.

Both of my children have the Trait, my husbands blood is clean,lol so they are Ok.

Do any of your children have the disease?

Yarkeya - posted on 04/10/2009

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hello my name is yarkeya and im 26yrs old i was diagnosed at 8 months old and was admitted to the hospital once in 17 yrs but when i turned 20 things got worsst in the past 4 yrs ive been admitted at least 30 times, i also have a supportive husband whom ive been married to for 5 years and we have a 3 yr old son who has trait, i am blessed to know that my children will only have trait due to my husband not having a trait, it gets hard for me at times but my husband is always there to tell me things are going to be okay. i think if you have a good support system and keep God first things will be okay!!!

Monique - posted on 03/08/2009

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Sorry ladies that it has taken me a while to get back with you all. As you know there is so predicting this disease. I have been in and out of the hospital and going to different specialist for some complications from the sicle cell. I had a blood transfusion last month, my 2nd one in 4 months..but know I am starting to recover now... and I am starting to feel better..If there is anything you ladies wish to discuss or update us about feel free...Monique

Monique - posted on 03/08/2009

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Sorry ladies that it has taken me a while to get back with you all. As you know there is so predicting this disease. I have been in and out of the hospital and going to different specialist for some complications from the sicle cell. I had a blood transfusion last month, my 2nd one in 4 months..but know I am starting to recover now... and I am starting to feel better..If there is anything you ladies wish to discuss or update us about feel free...Monique

Paula - posted on 02/25/2009

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Hey Monique my name is Paula Bonsu, I have had Sickle Cell Disease all my life, I am 26 going on 27 in May and I hae 2 girls who are 2 and 1/2 and 4 (just turned 4) and I have the best husband ever. We have been married almost 5 years and he has always been there for me (even while we dated). We love the Lord and that is our main source of support. Nice to meet you, I just wish it was not for this reason



God Bless, stay strong

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