Friday, May 11, 2007

Sickle Cell Blog

Sickle Cell Blog
Sickle Cell Blog . blogspot.com

This blog will chronicle the wonderful, poignant and fun filled days of living, loving and surviving with sickle cell anemia. My illness does not define me---I define my illness. This is my story.

6 comments:

p.joe said...

Keep fighting Vixen! I'm 47 and have been fighting Sickle Cell my whole life. I agree with you, you have to live past the pain, past physical limitations and past your fears. You just gotta live, and do it well.

God Bless

Vixen said...

Thanks P. Joe! 47 huh...how is it on that side:) I'm always nervous about getting older because of the complications.

Pallen said...

Vixen, I'm 48 and fabulous. It get's harder to keep up the pace, but with good clean living (and rest) there's nothing to fear but fear itself. Go concur the world girl!

B. Jewell said...

Hi, Vixen! Let me say that I have thoroughly enjoyed reading your blog! I am a 25 yr. old female with SCD and have been through many of the trials you speak of. Many props on such a great site! Keep it moving, like you do because we are more than people with Sickle Cell-we are WARRIORS.

Best Regards,
B. Jewell

Ashleigh said...

I'm so glad to have found your blog spot! My boyfriend has SCD, he is 23 and the most amazing man you could ever hope to meet! Coming into this relationship I knew nothing about SCD, so I researched, I learned all the facts, and all I thought I needed to know...However the first time I witnessed his pain, I realized the pages in books tell you so little about the life people with SCD endure every day. We live in a pretty small city in VA., and there aren't many resources or doc's here for him to see. I've been doing some research and just found Nicosan, there is so much hope in this product, and yet I feel like it's being taken away from him before he ever gets the chance to wake up without pain, to breathe normally, to enjoy all the things that this disease holds him back from...it makes me so mad that this seemingly wonderful cure-all has not been offered to him sooner..to anyone with SCD sooner! I'm sorry if I countinue to spout off ramndomness, he has been in the hospital for almost two weeks now, we watched 4th of July fireworks from his hospital bed last night, I came home only to bathe and research a little more about Nicosan, oh and Pulmonary Hypertension, which he has just been diagnosed with...I'm tired, I'm worried, and I'm scared for him, and me...I don't want to imagine a world without him in it. At the hospital I put on such a brave face, I try so hard to be strong for him, but I'm terrified inside, I'm worn out....And then I remember that he is the one with this disease, not me, and I feel so selfish for getting tired, and needing to come home to shower and walk our dogs, I feel selfish for going to work and leaving him lying there alone in a hospital where nobody knows how the hell to take care of him, they don't know what to do because there are so few people in our area with this disease!
o.k. i'm sorry for this long drawn out comment, when all I really wanted to say was please keep on fighting, keep pushing, keeping being the person you are, and writing these blogs, because you've just made a difference in my life, and for that I thank you!! - Ashleigh-

MsSimms said...

I have always known there is other people out there like me. But to put faces on them made my heart sink. I was diagnosed with SC when I was about 7 yrs old. I had alot of problems with it when I was younger and had a long stint of a relatively healthy life until recently. I too was recently diagnosed with Pulmonary Hypertension, so when I read Ashleigh's post I cried. I have been married 8 yrs now and last summer my husband witnessed his very first big one (a crisis), he has seen smaller ones but not like this one. I have never witnessed him so helpless and my heart ached more for him than I was in pain. So Ashleigh, he knows how you feel and don't feel selfish, you are only human just be there for him and don't forget about yourself.