Alternative Therapies

Okay, let's talk Alternative therapies. I had a list HERE on recommended alternative herbal remedies for sickle cell. Well almost a year has passed by since then, and I've been told and have remembered a few more.

• Carao fruit: One of my Brazilian readers mentioned this. Apparently, she has been giving carao to her daughter who is 3, and her H&H goes up a couple of points even if she's in the middle of a crises. It's a tropical origin (South American countries), so if you aren't close to the Equator you might not have access to it. Here is a site with a picture of what carao looks like (apparently it smells weird). I haven't taken it, but I wouldn't mind hearing another testimonial from someone that has.
• Cellfood: I used to take this in Nigeria, it was shipped to me from the US. You put a few drops of this liquid into an 8. oz glass of water/juice and sip on it all day long. "CELLFOOD is a proprietary ionic fomula containing dissolved oxygen, electrolytes, 78 ionic minerals, 34 enzymes and 17 amino acids— which provides an unsurpassed oxygenating source, and nutritional delivery system, to every cell of the body. CELLFOOD's unique structure oxygenates and feeds the cells— cleaning and 'tuning up' our body's systems all day long." I fell off the bandwagon with cellfood once I had a crises but you can look at information on it HERE.
• L Arginine
• Dioscovite: This contains high amounts of thiocynate, which is mainly the nutrients found in African Yam. Read up more about it HERE.
  
• Omega 3/Fatty Acids
• Tahitian Noni Juice: Apparently it helps to boost your immune system and reduce pain. This is a statement from another sickle cell warrior..I've personally never used it before. Check it out HERE.
  
• And don't forget the old list HERE
  

Hope you are all doing well and enjoying the beginning of the summer! Happy Memorial day weekend.

And the War Goes On...

Hello darlings,

I'm back in action! Oh yeah baby!!!:)

Seriously though, being sick totally sucks. I don't want to have another crises for a loooooong, looooooooong time. I'm not even shooting for a year anymore, I just wanna be 100% crises free.

So my visit to the ED totally sucked as usual. I really wish I could revamp all the emergency rooms in the United States in their ideology and treatment of sickle cell patients. Everyone was nice until the doctor came in to see me...she must have said something because the attitude of the staff totally changed after that. The only person that was cool to me after that was the housekeeper...she helped me walk to the bathroom and stuff while my nurse was doing the whole 'I'm so busy' rote.

It's so sad how sickle cell warriors are treated. When I was in Nigeria, I got treated way better in the hospital by the staff and doctors than I've been in any American hospital. Sad but true.

It's a shame because that hospital was on my short list to work in once I moved back to Oregon. It's a mile from my house, and is a trauma hospital and has the type of unit I want to work in. But after my one and only experience with their ER---that's so not happening....they lost out on an awesome nurse.

To those that have written me and are still waiting a response, I apologize. I will get to it this weekend. Hope u are all doing well. Okay, off to the Sickle Cell Board to check out the peeps there.

Hola!

363 days....

Where do I begin?

I'm living in Santa Barbara, the site where the Jesusita fires were burning fiercely a mere 2 days ago. Thankfully the fires have now been contained. It started last Monday, and by Thursday, the fires were raging out the control, the city evacuated. Heads up, if you ever have sickle cell and you are where there is smokey fires...GET THE HELL OUT.

I didn't, mainly because the hospital wasn't evacuated and I had to work. I came into work on Thursday soldiering in for my coworkers that couldn't make it in. The hospital ventilation system is old, and according to hospital regulations, the vents must remain on to circulate the 'sick air' out of the hospital. By 11pm that night, I was suffocating on the job, breathing in smoke with minimal oxygen. I thought I was going to pass out. I spent the rest of the night alternating between hugged around an oxygen tank and wearing a mask. It was awful. Thankfully my coworkers pitched in and helped me out, otherwise I don't know how I could have survived the night. Motrin was my friend on Thursday night.

Friday morning, I drove 2 hours to LA. My flight to Portland was thankfully on time, and by early afternoon, I was in Norio's arms, content for a moment. I crashed at home, sleeping for a few hours, breathing in fresh Portland air. Around 5pm, we went to an open house. I was feeling poorly by then, but fighting desperately to stay normal.

At 7pm, my streak was broken. I was only crises/hospital free for 363 days:( I landed in the emergency room, my whole body aching, with tears streaming down my face. My joints were on fire, my chest was burning and I was in full blown crises mode. Thankfully, a little hydration and IV Dilaudid fixed me right up and they discharged me 2 hours later.

I've been in bed since then...fighting hard not to land back in the hospital. For starters...the ER I was at totally sucked, but that is a story for another day. I'm just glad that I'm home, lucid and able to type this without curling up in too much pain.

I have to go back to SB on Wednesday to start work on Thursday, but my body is begging me to take a few days off. I think I will comply. So instead of celebrating my 1 year anniversary of being crises free thanks to Nicosan, I've crashed and burned like everyone else.

Hope you are all well.

Nicosan Updates

There seems to be some hope on the horizon for Nicosan. I can't go into details yet, but I will once the changes have all been confirmed. I knew that you guys had intercessory prayer mojo backing us up! What warrior doesn't?

Nicosan Woes

Hello everyone,

I've been digress in mentioning a few snags that have hit Nicosan. I've gotten several emails over the past few weeks that have alarmed me as well as sent me for more information. As many of you might know, Xechem USA filed for bankruptcy last year. Currently there is pending litigation about the dissolution of assets for the company with the shareholders and principal members. In addition to that Xechem Nigeria, the branch that actualy produces Nicosan lost their production license a few weeks ago.

Now what does that mean for you?

First of all, I have no idea. The key players that I've been talking to all have assured me that nothing is going to happen to Nicosan and that production will resume soon. There is still a stockpile of Nicosan in the market, and you are able to get some, but if production doesn't kick back in after a while, eventually this supply will dry up too. Remember, each bottle has an expiration date, so stockpiling any past the expiration date won't do much good.

Which really sucks for us the end user because just as soon as we find something that actually works and has personally changed my life, I feel like it's getting snatched away.

So what can we do to help?

Besides the fact that not everyone is super loaded with cash right now (economic crises, taxes etc), and does not have the millions that it would take to 1. get the formula 2. get it produced and distributed...we can still do something.

For starters, please send a prayer to your spiritual Deity to hook us all up. Not just with Nicosan, but with a solution to this tangible ailment. There are so many avenues for sickle cell research and possible cures, but something always seems to stand in the way. Pray that whatever or whoever is causing the roadblocks will have a change of heart, and seek to help instead of hinder the sickle cell cure pathway. Pray that there is enough Nicosan in the market and that production starts up soon.

If anyone has any ideas or suggestions, let me know. My email address is in the sidebar as usual.

Cheers!

April Fools Joke..not cool

Hello darlings,

In the interest of full disclosure, I must state that I had pain this week. I actually had to call off of work on April 1st. The pains started as they normally did, twinges here and there, L1s, nothing major, and I ignored them, thinking it was a fluke and would just go away.

However it could not be denied and less than an hour later I was shivering under the blankets in L3 pain all over my body. I had to dig through several boxes to get to my pain medicine (it's been so long, I'd started misplacing them!). I took a Benadryl/Dilaudid mix, 2 Nicosan and some Motrin.

It was so bad...it wasn't the worst pain that I've ever had, but I haven't had pain in so long that I think I have totally forgotten how bad it could get and how to deal. I was shocked at first, and then rapidly unable to cope, crying and everything. So. Not. Pretty. It was so weird, almost surreal like it wasn't me in pain...after all, I was at 11 months pain free!

Grrrrr!

The good news is that once the pain meds kicked in (or maybe the Benadryl) I fell asleep and woke up hours later with localized pain in one leg only. That quickly dissipated throughout the course of the next day and by the 3rd I was right as rain, with only my track record tarnished. My body totally played an April Fools prank on me, breaking my 11 month pain free streak!

Looking on the bright side, it could have been alot worse. I could have been in the hospital in full blown crises mode getting pumped full of pints of blood and poked a bajillion times a day. Okay, that does put stuff in perspective. I've truly been blessed.

Hope everyone is enjoying this fine spring weather. And to those that have written in, I will be responding posthaste, I just have to wade through tons of correspondence at the moment.

Ciao everyone...hope you are all well.

Sickle Cell & President Obama

My sister sent this to me from a friend of a friend. Guess Sickle Cell is in the eye of our new president after all!

Hi All,

In our continuing efforts to spread awareness about Sickle Cell Disease...Gabriel and I got to meet with Pres. Obama on this past Tuesday! Can you say WHAT A GREAT DAY!

Tuesday was Sickle Cell Awareness Day on Capital Hill! :)
We also met with Congresswoman Sheila Jackson Lee (D. Houston, Texas) ; Congressman Danny Davis (D. Illinois), Congress woman Donna Christensen (D. U.S Virgin Islands); Congress woman Barbara Lee (D. Oakland, California).

But we met with President Obama for 10-15 minutes in the Oval Office. He joked with Gabriel about the gifts Gabriel gave him. He was sooooo kind!

The Austin American Statesman interviewed us both this morning about the story...
There are more photos but this is all we have been given so far. Only the official White House photographer is allowed to take photos of the president in the White House...so I was not allowed to take any photos with my camera. But NOTHING could spoil that day!

It was a HUGE blessing!!!
God is incredibly GOOD!!! :)
Shelly and Gabriel George

Thanks to all those that have sent in links!

http://www.statesman.com/news/content/news/stories/local/03/29/0329philanthropy.html

http://blogs.mysanantonio.com/weblogs/education/2009/03/local-prof-and-son-meet-obama.html

Sickle cell was also included in the inauguration:

http://www.timesonline.co.uk/tol/news/world/us_and_americas/us_elections/article5549233.ece