Tuesday, April 29, 2008

Back from Hawaii

Wow that was such a nice vacation. I'm going to post pics soon on both Myspace and Facebook, but once I got over the 'sickle cell' thing it was so fun. This didn't happen until Thursday, day 5 of 7...grrr! That was my first day that I didn't take any painkillers whatsover.

We were in Kona, which is on the big island of Hawaii, on the side where a volcanic eruption had left beautiful corals, black rocks and turquoise oceans. The view was absolutely divine, and I did manage to conquer my fears of the water and actually go kayaking for an hour! It's so unlike me to enter the water especially not being a swimmer, but Norio promised he wouldn't let me drown...lol.

On coconut island, he opened coconuts and we drank coconut juice. I haven't had a real coconut in ages, and it just reminds so much of back home in Nigeria. Hawaii had too many representations of Naija to count, I really think I need to go to Naija soon. There were kale plants, cassava plants and the climate was almost alike.

Anyway, I'm back and safe and in one piece. It was absolutely divine and I'm glad that I didn't miss this trip.

Wednesday, April 23, 2008


The flight to Hawaii was really long, about 8 hours in total. I was worried that my sickle cell would flare up but it held up. The main thing is that I can't go into the water as much as I would like to because my core body temperature drops when I'm immersed in water. Plus my right leg and knee has been paining me all week long and is causing a serious dent in this holiday. Every day it is getting better, the pain a little less, but I've been taking painkillers around the clock to keep from getting into a crises while on vacation.

Norio has been really worried, he wanted to cancel the whole trip because I was having pain the 2 days leading up to it. But this is one of those once in a lifetime vacations that I would have totally kicked myself for missing. I very stubbornly told him, "Sickle cell took over my graduation, my birthdays, and every single major holiday in the last 4 years. it's NOT taking my vacation dammit!"

I've done pretty much everything that I've wanted to do so far, just stayed on shore though, I don't want to antagonize myself into a crises. The house is beautiful, the beach is surreal and the ocean is absolutely sublime. I totally can understand why people have their weddings here, it's so romantic.

Tomorrow morning the plan is to go kayaking and 'swimming' with the dolphins. I'll be onshore about 2 miles away but I hope Norio can get some good pics for me.

Hope you all are doing well and aloha from Kona!

Sunday, April 20, 2008

Flying to Hawaii

What's good fam?

I just wanted to check in before I jetsetted to Hawaii for the next week. I'll be back by the 30th. I'm kinda nervous about the trip, mainly because I haven't been out of the US in 8 years and also the flight is 6 hours from Cali. My last trip to NY wasn't so bad with the flight, so I'm hoping that this time will be just as dandy.

I'm going to hydrate alot, take my arginine with me as well as make sure that I stay rested and stress free. Norio is going as well, so at least I know if anything happens, I'm not a stranger in a strange land.

Hahaha, I'm so dramatic sometimes. Hope you all are doing well.


Tuesday, April 15, 2008

People with the Trait Have Pain Too!

This is a comment from one of my readers that is 46 that has the sickle cell trait but not the disease.
Some times I have unexplained pain in one of my feet, but it's usually only when it's cold, and after reading some of your blogs, I see that cold weather seems to trigger it. I also have a daughter with the trait and she has complained of pain and headaches. She has headaches ALL the time, almost daily and have of course been tested for things but no Doctor ever suggested that it could be from the SS. Do you know if SS trait causes a lot of headaches?
The only times that I have headaches with my sickle cell is when I'm in a full blown crises and I'm having pain all over my body. I haven't heard of it a symptom of sickle cell, but then again I'm not an expert. She might have some other underlying condition, nutritional imbalance or health issue that we aren't aware of. Another thing is to make sure that she's getting enough sleep. I've noticed that when Norio doesn't get enough rest at night, he wakes up with headaches. Besides that I'm out of ideas.

Does anyone else have input on this?

Thanks for sharing your experiences with me and good luck and God bless both you and your daughter.

Monday, April 7, 2008

Dealing with Sickle Cell Without Using Drugs

My daughter who is 12 years old (has SS)is thinking about taking Hydroxyurea instead of getting monthly blood transfusions. If Hydroxyurea is not right for sickle cell people what other thing can they take or do if they don't want the blood monthly? Do you know?

First of all, know that I'm not a licensed medical professional. My views on Hydrea are just from my personal experiences and beliefs about it. It's shown to be effective for some people just not all. Also, it only drops your incidence of having a crises by what...30-50%; which when added to the side effects is not enough for me.

Keep in mind that not everyone has side effects, and my hematologist recommends Hydrea strongly to all his clients with sickle cell. This is the only FDA approved drug that is presently used in the US to control sickle cell. There are other options though.
  1. There are non-pharmaceutical options like Pro-Arginine.
  2. Diet modifications like being vegetarian, avoiding overly processed and fried foods and bulking up on foods rich in thiocynate like carrots, beets and green leafy vegetables. I highly recommend buying and incorporating Back to Our Roots in your life.
  3. Stress relieving activities like pilates and yoga, as well as a regular exercise regimen.
  4. Hydrate, hydrate, hydrate! Drink as much water as possible. With sickle cell, you can never drink enough water. I have a friend that is 48 with sickle cell, has never been hospitalized a day in his life. His secret? Water. He drinks 2 gallons a day! So drink up.
  5. Rest. This is one of the points that I struggle with especially with my busy schedule. Try to get at least 6-8 hours a night. The most rejuvenating sleep is between 8pm and midnight. However, your body has to be in REM (which takes about 90 minutes from when you actually fall asleep). So try to go to bed early, sleep those hours and wake up feeling refreshed and rejuvenated. I'm a night own by nature and by my job so this is a hard one for me.
Those are the main precepts that I recommend for your daughter. I would also highly recommend doing some research into a bone marrow transplant. She might be able to be cured from this, so check with your docs if she's a good candidate.

Friday, April 4, 2008

What's up!

Okay, okay, it's been a minute. I've been fine sickle cell wise though. Just sorting through some other issues that have me not having that much time online like I used to.

Anyway, this is a shout out to one of my sickle cell warriors, Khiana! Stay strong girl and hope you get well soon.

To everyone that has emailed/left comments in the last week, I want you to know that I will address them all---once I get a minute to breathe. Thanks for staying in touch though and for your input...it's always good to find out more info about dealing with this ailment.