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Sickle Cell --- The Big Secret

This post is for Kem.

When I was younger, my parents kept my sickle cell a huge secret. They didn't want me categorized and stigmatized as a Sickler. Although it was a good move in some areas on their part, it left me feeling like I was living a double life. When I was out sick, I would claim to have had malaria instead of sickle cell. I couldn't really talk about my daily pains to friends and such, and couldn't explain why I didn't go swimming without outright lying that I was allergic to chlorine. Although it protected me from getting bullied in school, it also opened me up to a stunted social life.

So I immersed myself in books. See with books I didn't have to explain where I was when I was gone, and I could still read them even if I was in the hospital. I think my passion for reading was developed more as a survival technique than anything else.

When I got to high school, I finally got to go away to boarding school, away from my overprotective parents. My sisters got enrolled in the same school but for 6 months, I felt kinda normal. I started telling people one by one, people that I was close with, and explaining my condition to them. Most people that hear about sickle cell and treat you bad just don't have a clue what you are dealing with on a daily basis. I tell them in detail how awful the pain is and how it affects my life.

From this place of understanding, I was able to have a close group of friends that took care of me when I was sick and I was able to feel a sense of normalcy in high school. Even my teachers got with the program and kept me abreast whenever I was in the hospital for a prolonged period of time. Sure my parents still got their way and had the principal put me on a restricted activity program, but I wasn't punished for it because I was open about it.

When you explain the ailment to people and you see the light of understanding dawn in their eyes, you allow yourself to be vulnerable but at the same time create a connection. Explain to people why your eyes are yellow..."I'm jaundiced!" then they ask was jaundice is. Knowledge is power, so empower your classmates to not be so closeminded and ignorant.

If you act ashamed of your disease, people will treat you like a pariah. If you act like it's no big deal, just something you are struggling with just as they have things they are struggling with; then people will be able to relate to you. Break down the third wall of ignorance honey...speak up.

Good luck

Hydroxyurea & Infertility

Now my doctors are trying to get my on Hydroxyurea like hardcore. I'm still scared about it. I know some people have used it with lots of great results, but those side effects are no joke---AND NOT BEING ABLE TO HAVE CHILDREN?? That is some crazy shit.

Well, the main thing is that if you conceive while on Hydroxyurea, your child will have birth defects. I'm not even sure I want children in the future, but not having that option because of sickle cell is something I'm not willing to take.

So there goes another reason why I won't take Hydroxyurea. I'm hoping that taking a mix of Fagara, Nicosan and Arginine will be the right combo for me. My mom is gonna get me the fagara root and I still have to figure out where I'm going to get Nicosan from, maybe I'll pick it up when I go to Nigeria this summer.

Hope you are having a great weekend...I'm going to work 3 nights in a row and then have 6 days off...wish me luck!

Back From Another Crises

First of all, I will update the ticker. Now it's only been a 5 days since my last admission, bummer---what a way to start the year. But I'm not going to gripe about it, such is the lot in my life. Everyone has their burden to bear.

Last year I had 3 major hospitalizations, actually, it was a better year than before. It's just that I still feel like I can do better. For the last 3 years, I've been getting a crises in January like clockwork, I almost expected it this time, even though my timeline wasn't right on the 3-4 month mark yet. At least this means I'm good until May...I hope I'll skip the March Madness crises.

This year I start with just one. I'm going to take better care of myself, rest, eat right, exercise and drink my Arginine like it's the elixir of life. I have to kick this sickle cell this year because I have so much planned, my wedding, my trip to Nigeria and then all the plans on the new house. I don't even want to be sick anymore, I feel like it's such a waste of my energy.

Yeah, waste of energy. It doesn't make sense but it is, being sick drains me and everytime I fall sick I feel like I have to start back up again from the ground up with work, life and routines. I feel like I get a good groove going, a regular life cycle and then with every crises everything shuffles all over again.

Enough melancholy. Thanks for your lovely emails and kind thoughts. We are all in this together.

Happy New Year everyone.

Crises #1 of 2008: Triggers

Okay, so I'm trying to think about everything that contributed to this last crises, so that I can do better with the 'taking care of myself' part and prevent another one from happening.

1. Working Overtime: Overtime pay rocks, but the OT on my body was a bad call. I thought that I was fine, actually didn't do any OT the week of Xmas & New Year, but perhaps working 64 hours the week before wasn't a good idea.
2. Travelling: Although I wasn't driving, I did take a 9 hour trip up to Oregon. We broke it halfway just for my benefit, but from now on trips longer than 4 hours should be flown.
3. The Cold: I had caught a really bad cold the week before I fell sick. It was a head cold, complete with the coughing, achy head and runny nose. I amped up on Vit C. and cold meds, but it just kept getting worse everyday. I even had it when I took the drive up to Oregon.
4. Cold Ass Oregon: I'm trying not to bitch about the weather here. It's hard but I'm trying. It's not as cold as Baltimore was and I lived there for over 3 years. It's just that I'm not used to it yet and coming with a cold wasn't a good mix.
5. Exhaustion: My body was tired and just gave out of me. The pains came as a way of telling me to stop and chill out. I already had a job lined up for a couple of days after I moved up here, I should have taken some days off after the hard work I put in the month before. So my body was telling me to chill.
6. Dehydration: I'm always dehydrated when I'm not working. You would think that I would drink more at home than at work, but just having a few days off from work throws my hydration schedule off. I tend to take water with me to work and drink a whole gallon over an 8 hour shift, but when I'm at home, I just drink only one liter. I should get a better habit of drinking regardless of whether I work or not.

That's all I can think of right now. That's a synopsis of what I think triggered this last crises.

I'm Alive...Yay!

Hey peoples,

Do I really post that infrequent that noone knows I've been out? Dayum! New Year Resolution, post more often.

I was sick in the hospital since the 5th, not a cool way to start the year but it has been my modus operandi as of the last few years.

Anyway, there is alot to do and say, but first I must catch up on all you blogging freaks out there.

Oh, and although I'm hella late,

HAPPY NEW YEAR!!!