I just got off the phone with Milan, a reader from the blog who is the absolutely most fabulous chick I’ve had the pleasure of meeting with sickle cell. She’s like a young version of me, all spunk, feisty, full of determination, attitude, sass and heart. She’s actually what I wish I was when I was her age; she’s so smart and self-aware.
We spoke for an hour and I must say, talking to someone else that has sickle cell is one of the most liberating experiences that you can have. I heartily recommend it to everyone that has sickle cell. We go through our lives in isolation, rarely coming across people that really get what it is to be like us, to go through what we go through. Sure we do come across people that “understand” but unless actually you have sickle cell, you have no idea!
Milan and I connected on so many levels, and we’ve actually been through alot of similar experiences. I think talking and sharing with her opened me up to alot of issues that sickle cell warriors go through that I haven’t even begun to address on here, like how to deal with a doctor that is butting heads with you, ignorant medical professionals, isolation in white communities and when insurance gives you the boot.
So, for meeting people with sickle cell, the internet is such a valuable resource. Don’t be afraid of using it. Try Myspace, Facebook, Yahoo groups or forums. Try your doctor, he might have another patient with sickle cell that they can connect you with. Don’t be afraid to pick up the phone, dial the number and actually talk live with another sickle cell warrior.
Talk to another person with sick cell is very liberating. I have SC and I met the love of my life who also had SC. He passed away last month and I feel like I lost my best friend and brother and all the above. He was the strongest person ive ever known in my life he went through so much and you would never know. He had a stroke (I guess they said he was bleeding and they couldn’t stop it) at my house and I watched him in ICU and getting better then worse and so on until ‘it was nothing else they could do…anyway it’s hard to talk to my family sometimes they act like I haven’t had this for my while life. I understand it’s nothing they can do but… Idk. This I’d all scary I’m trying to be positive but hard. Sorry for ranting but yeah bottom line is knowing another warrior is medicine doctor can prescribe. * an please dont bash us for vejbv together o ciously we didt make it to forever…*
Sorry about the typos…
I to am trying to meet ppl in my area to connect with. ppl that xan share their experience and teach me as I go this this journey with my little warrior. and maybe plan get togethers as part of a support system
I need a frnd who is also a sc I am based in Adamawa Nigeria here is my no 08096824146
Your comment.. am hamzah and am as.am in Ghana.I need a friend and a doctor .these my email.hnumoh@gmail. com