Sickle Cell & Pity

Here is a great question at the Sickle Cell Ning Forum. 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,…

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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…

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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…

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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…

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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…

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In the Hospital in PainCop

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…

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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…

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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…

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Bone Marrow Transplant + Chemo is the new Cure

Hey everyone. I just got this link on some research conducted at John Hopkins University related to sickle cell. The article talks about Chemotherapy as the new adjunct therapy in BMT patients…feel free to go ahead and read it. According to Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins University,…

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Live Your Pain

Scars that bindTears that fasten me to uOur pain unites usSo be true to this emotionlive without shame your woundsCarry your head high as the tears flow.Let the tears fall and express your painwithout reservation, without regretbecause the more we share our painthe closer we become.Pain shared is real, true, pureI can’t fake pain, so…

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