Tuesday, December 23, 2008

I got an A!

Hey, I just got my grades for this last semester. I rocked out y'all! My GPA is 3.9 and I'm still banging out straight A's. Oh yeah, oh yeah *jumping up and down*

Anyway, in the spirit of giving, sharing and all that Jazz, I'm going to host the sickle cell presentation I created for my final class project, the one that earned me a resounding A+. The premise of the project is that we were supposed to identify a vulnerable population and develop an assessment tool for them. I created a sickle cell questionnaire...send me a message if you want that, and wrote a paper...and a PowerPoint presentation. It was only supposed to be one teaching tool and the paper, but I kinda went overboard...y'all know how passionate I can be.

Okay without further ado...

Sunday, December 21, 2008

Monday, December 15, 2008

Road Trip!!!

So I just did a cross country road trip down 101. Whoever said people with sickle cell could not drive long distances obviously has never met me.

I drove 997 miles from Portland, OR to Santa Barbara, CA...all by my wonderful, fabulous self! Much to the consternation of my parents, who wanted me to take Norio or a friend, I packed up Viola (pictured right---->) and headed south.

The first day, I drove through the wintery, snowy passes of Oregon for five and a half hours, and stopped for the night at a hotel in Yreka, CA. I was listening to music, books on tape (The Camel Club by David Baldacci was amazing!), and talking on the phone to my friends and family.

The second day, I drove halfway to San Fransciso...then turned around about 150 miles to visit my friend in Chico, CA...about 70 miles from Sacramento. That was a 7 hour drive. My friend Shay is 8 months pregnant, and this would be the last time seeing her before she delivered her bundle of joy! I spent the night with her talking...and took off early the next morning.

The last day, I drove 9 hours...and drove through SF, stopped at the Nigerian store for foodstuffs and kept on going until I reached Santa Barbara. All in all, I would say it was an awesome first solo road trip. Here's to many more!

So far, no problems, just minor soreness and some aches at the end of the day, but I'm sure a regular driver would have had this as well. I took some Motrin with me which I had to take on days 2 and 3.

I'm feeling great now, I'm down here ready to start work. So here is to defying another sickle cell rule.

Sunday, December 14, 2008


Oh my goodness, i just was sent a link to the most interactive sickle cell forum on the web! It was started by an obviously tech savvy and funny fam. You can upload blogs, pix, links, videos and just pretty much everything else like you could on Myspace/Facebook and other social networking sites---but it's all about SCD.

Sign up here
...and add me as your friend!

*I fixed the links!*

Saturday, December 13, 2008

How Does Nicosan Work??

I got asked this question by one of my more inquisitive readers and I had to go searching for an answer! This is directly quoted from an article on Dr NDTV.com written by Dr. Kumar.

Nicosan is a phytochemical agent i.e. a chemical or nutrient derived from a plant source that is not required for normal functioning of the body but that nonetheless has a beneficial effect on health or an active role in the amelioration of disease. Thus, phytochemicals differ from traditional nutrients in that they are not a necessity for normal metabolism, and their absence will not result in a deficiency disease. It is made from four botanical species indigenous to Nigeria and consists of extract of Sorghum bicolor leaf, Pterocarpus osum stem, Piper guineensis seed and Eugenia caryophyllum flower.

The drug was granted orphan drug status by the United States Food and Drug Administration (2004) and the European Medicine Evaluation Agency (2005) and is currently classified as an orphan drug i.e. a drug used to treat rare diseases whose development may not offer the pharmaceutical industry a return on the research investment. The drug was developed at the Nigerian National Institute for Pharmaceutical Research and Development and has undergone Phase I, Phase IIa and IIb clinical trials and currently Phase III clinical trials are going on in Nigeria. The data shows that treatment with niprisan significantly reduced the frequency of sickle cell disease crises associated with severe pain during a six-month period (P < .01) and nearly 73% of patients achieved complete remission. Niprisan did not appear to cause acute hepatic or renal toxicity and no serious adverse events were reported. FDA approval is still pending though the drug is approved in Nigeria. Although its precise mechanism of action is not yet confirmed, it has been shown to inhibit red cell sickling in vitro by increasing solubility of sickle haemoglobin. Analysis of its effect on the Hb S oxygen affinity indicated that the drug slightly shifted the oxygen-dissociation curve of Hb S toward the left without any apparent change in the Hill coefficient. These results suggest that its anti-sickling properties may involve direct interaction with haemoglobin molecules.

Despite early trials showing a benefit, the Cochrane Collaborations review on phytochemicals for SCD noted that while Niprisan appeared to be safe and effective in reducing crises associated with severe pain over a six-month follow-up period of this trial, further trials are required to assess its role in the management of people with sickle cell disease.

It is as yet premature to say what the impact of this drug will be, however, users of the medicine claim to be symptom free for months. A diet rich in nutritional thiocyanate / dioscovite has anecdotally been shown to be effective in preventing red blood cell sickling in people with sickle cell disease. No clinical trials have been conducted and there are no published randomized controlled trials. Though not a cure, it is touted as controlling the symptoms associated with the disease.

Published on November 14, 2008 by Dr. Shirish Kumar, Consultant Haematologist, Sir Ganga Ram Hospital, New Delhi, India

Friday, December 12, 2008

New Adult SCD Study

The Adult Sickle Cell Quality of Life Measurement Information System
(ASCQ-Me) Project is creating a tool to help doctors and researchers
across the U.S. better understand what it's like for adults living
with sickle cell disease.

By understanding how sickle cell affects a person's daily life –
like how it affects sleeping, eating, being able to move around,
emotions and feelings, and the way people spend time with family and
friends – researchers can better determine the real effects of
different treatments and doctors may be better able to provide
high-quality care.

We want to find out what it's like to live with sickle cell disease
from the people who know best. We are seeking adults with sickle cell
disease to take the draft questionnaire.

All of the research is confidential and voluntary, and all participants
will receive $80 as thanks. If you live in the Baltimore/Washington area
and are interested in the study, please call 410-455-1586 to get more
information and see if you are eligible.

This project is being funded by the National Heart, Lung, and Blood
Institute (NHLBI).

Monday, December 8, 2008

Variations of Sickle Cell

Since sickle cell is a mutation of a strand of chromosomes, there are several different strains or variations. Here are the five most commonly documented:

Sickle cell trait: The person is carrying the defective gene, HbS, but also has some normal hemoglobin, HbA. Persons with sickle cell trait are usually without symptoms of the disease but have mild anemia. Under intense, stressful conditions, exhaustion, hypoxia (low oxygen), and/or severe infection, the sickling of the defective hemoglobin may occur and result in some complications associated with the sickle cell disease. This affects 1 in 12 African Americans.

Sickle cell anemia: The person has most or all of the normal hemoglobin (HbA) replaced with the sickle hemoglobin (HbS). It is the most common and most severe form of the sickle cell variations. These persons suffer from a variety of complications due to the shape and thickness of the sickled cells. Severe and chronic anemia is also a common characteristic for children with HbSS. This is what I have.

Sickle cell - hemoglobin C disease: The person has both HbS and HbC. This is often referred to as HbSC. Hemoglobin C causes red blood cells, called target cells, to develop. Having just some hemoglobin C and normal hemoglobin, this person might be mildy anemic. These persons often suffer some of the complications associated with SCD, but to a milder degree. Vaso-occlusive crises (the flow of blood is blocked because the sickled cells have become stuck in the blood vessels), organ damage from repeated sickling and anemia, and high risk for infection are all similar traits for HbSS and HbSC.

Sickle cell - hemoglobin E disease: This variation is similar to sickle cell-C disease except that an element has been replaced in the hemoglobin molecule and is often seen in Southeast Asia populations. Some persons with hemoglobin E disease are without symptoms. However, under certain conditions, such as exhaustion, hypoxia, severe infection, and/or iron deficiency, some mild to moderate anemia may occur.

Hemoglobin S-beta-thalassemia: This involves an inheritance of both the thalassemia and sickle cell genes. The disorder produces symptoms of moderate anemia and many of the same conditions associated with sickle cell disease. While this disorder more often has milder symptoms than sickle cell disease, it may also produce exacerbations as severe as those of sickle cell disease.

Sunday, December 7, 2008

Diet For Sickle Cell Anemia

Apparently, people with sickle cell have lower levels of thiocynate in their blood, a compound and reduces 'sickling'. This is evidenced by those SCD patients living in the Caribbean or African countries who have very few painful episodes, but once they move to the US...they have much more flare ups. You need to continue the same diet you had back home, a diet rich in earthy foods like the following:

Foods Rich in Thiocynate
African yam
alfalfa sprouts
bamboo shoot
bitter almond
Brussels sprouts
buffalo berry
elderberry flaxseed
lima bean
macadamia nuts
mustard green
radish sprouts
red clover

The supplement Dioscovite has thiocynate as the active ingredient...so if you want to go that route, you can. Good luck!

Friday, December 5, 2008

Sickle Cell Diet

A couple of people have written asking me about the proper sickle cell diet. The best collection of sickle cell diet principles, menus and recipes that I've come across is in:

Back to Our Roots Food For the Gods, "Cooking for the control of sickle cell anemia and disease prevention" by Chef Dawud R. Ujamaa

You can get it from Amazon right here: http://www.amazon.com/Back-Our-Roots-Cooking-Prevention/dp/0805997695/ref=sr_1_1?ie=UTF8&qid=1228690267&sr=8-1

The best underlying principles are avoid fatty foods, those high in cholesterol and meat. Have a nutritious diet around lots of fruits, vegetables especially green leafy vegetables and lots and lots of water.

Saturday, November 29, 2008

Nicosan News

Okay, sorry I haven't been posting in a while...real life has me in knots. But...I'm very heartened by all the wonderful emails I've been getting from everyone who has gotten their Nicosan and has started using it. I love hearing whatever feedback you have...and I'm sure that this will serve as an inspiration to others. So send in your comments!
From the time of diagnosis in May my daughter kept getting crisis after crisis. I'll say about 4/5 in two months. It was mainly swollen feet and fingers. Took my baby for vaccination yesterday and did a blood test. HB came out at 13.3. The last had been 8. I am so excited. Soon as I got the news came home and went on my knees to give praise and Glory back to God. She has been on it [Nicosan] for a month now. The doctors here were very impressed with the blood results. I decided not to tell them when I started her on it because I didn't want anyone to discourage me...NK
Rock on! That's so great! Here's one from another user with Sickle cell thallesemia...

He's been on it for about a week now and we’re keeping a diary to mark his progress. There hasn’t been too much so far, of course, but we’re taking pleasure in the little things we’ve seen: mild to moderate pain at night, as opposed to mild to moderate pain all night and day. A little less yellow in the eyes. A bit more energy, not enough to run marathons, but enough to notice something different. Some things, however, have been strange. He has less pain in his bigger body parts, like legs and arms, but it’s moved to smaller parts like his fingers and knuckles. Even had one in his toe the other day, and he said that’s never happened. I joked that the remaining sickled cells were trying to hide wherever they could, since Nicosan is rebuilding all the bad stuff in him already, lol.~TM
So...what's your Nicosan story?

Friday, November 28, 2008

Xechem Filed Bankruptcy

To everyone that sent me emails about Xechem going bankrupt...thanks--I got the memo! Xechem is the company that produces Nicosan in Nigeria and they filed for bankruptcy last week.


However, multiple sources tell me that they haven't stopped production of Nicosan yet and have no plans to do so. In addition, they still have a huge stockpile of unsold Nicosan in the warehouse. However with the economy...this could change very quickly.

So what can we do besides totally freaking out and stockpiling hoards of Nicosan?

I've been approached to write another series of letters to Xechem from the User perspective to and since now we have a bunch of users on this forum...I figure the more the merrier. If you would like to add your thoughts/comments to the petition, please email me (vixentales at gmail).


Wednesday, November 12, 2008

Did you Take Your Nicosan?

Okay, this week I got a whole bunch of emails from readers that ordered in Week One and Week Two....more and more people are getting their orders! Yippeee! Please note that you won't start feeling curative effects for 15 days after you start taking it..but in 30-45 days, you will see a dramatic reduction in your crises and pain. I'm past the 6 month mark and I'm still crises free (that's never happened to me before!)

Here are some great comments from some of my readers:
We did get the shipment of Nicosan. We are so excited to get Ashly started on it. We received it on the 8th and shipping didn't take long as I expected it to. Ashly started taking it on the 9th. I'm glad to report that she haven't had any side effects so far. ~L.J.

i got my order!!!!!!!!!
Have you had your Nicosan today?

Saturday, November 8, 2008

Stand Up!

Awwww, I got an email from another reader who just ordered his Nicosan 2 weeks ago. I must say, I have the most supportive and wonderful readers on this blog.
I received my order today. Thanks for putting your neck out there for us.
God bless.

So...have you got your Nicosan yet? November marks my 6 month of being pain free and crises free. Please, join the bandwagon and get your Nicosan blessing---you won't regret it. Email me with questions, comments and especially if you've gotten your shipment and how Nicosan has changed your life.

Tuesday, November 4, 2008

Go Vote!!

If you live in the US of A, leave what you are doing and please...GO VOTE RIGHT NOW!!!

Especially if you are voting for my man, Obama.

Yes We Can.

Monday, November 3, 2008

Check your Mailboxes...

Good news everyone! Whoever ordered their Nicosan in the first week should be expecting a pretty little box in the next couple of days. This is an email from one my readers that got their box yesterday.

This is to let you know that I received my shipment of Nicosan today. I will start taking it immediately.

Kindly email me when you get your shipment as well...and please let me know of your usage stories...good, bad or indifferent. Good luck everyone and I hope that you have the same wonderful results that I'm having. (6 months painfree and counting!WOOHOO!!)

Sunday, November 2, 2008

Other Treatment

For those of you unable to get Nicosan or unwilling to join in the wonders of Nicosan, one of my readers, Charles, was kind enough to put together a list of other remedies that have been shown to alleviate sickle cell crises and pain. (Not cure---but alleviate!) I haven't tried all of these out myself, but the ones I have tried are in the File Cabinet. Please do your own research before trying any of these, and if you have good results, spread the word!

L-Arginine (ProArgi-9Plus)
Organic Germanium
Sodium Nitrate -- is a chemical compound
Pain and Anxiety management with meditation/awareness

Alternative Remedies

Thursday, October 30, 2008

Making an Impact

Hey everyone,

Wow, thanks for the huge response. So far, I have almost 50 signatures (46 to be exact)...I didn't even know that many people read this blog! I recently got a response from a reader in Nigeria that shows that we did make an impact!
I guess your open letter to Xechem/Nicosan is being taken seriously and it is having effect within the organization. I say this because i came across an ad on Google concerning Nicosan. The COY [Xechem's management firm] has just began to create awareness about their product on the internet for the first time. Great. Thanks to you, I guess.
*Doing a happy dance*

Go Team Nicosan!!!

Monday, October 27, 2008

Open Letter to Xechem/Nicosan

Hey everyone, Due to the constant requests for changes with distribution of Nicosan, I'm putting up a letter that I plan to send to the Xechem board. If you would like to support the contents in this letter, please either email me your name or sign below. The more people we have, the bigger the impact. I might modify the letter to fit the power of WE and whatever suggestions anyone has. Thanks.

Dear Nicosan Administrators/Creators:

My name is [redacted] and I’m the author behind the sickle cell blog found at http://sicklecellblog.blogspot.com. The reason I’m writing you is to thank you for creating such a wonderful remedy for sickle cell crises and to let you know how wonderfully this drug has improved my life.

I’ve lived with the pain of sickle cell all my life---the pain has been a part of my every waking existence and I’m sure that many other sickle cell sufferers can relate to this. I’ve tried various medications and herbal remedies in the past; herbal teas, almond seed tea (yuck!), fagara root, Hydroxyurea, Pro-Arginine to control this condition but have always met with very limited results and/or awful side effects!

I reside in the United States and one of my readers recommended Nicosan to me in May. I’ve been taking it since then and the results have been extraordinary. I can’t even remember the last time that I had pain, and my painkillers sit in my cupboard collecting dust. I have more energy and can live life to the fullest without worrying about another crises creeping up on me. My life has totally changed, and it’s all because of Nicosan. I feel like I have a fresh new lease on life, and I can do anything and not have to worry about falling sick ever or collapsing from the pain. I’m constantly amazed that there are no side effects at all, and that my blood counts remain steady.

Presently I’ve told everyone I know with sickle cell about Nicosan and everyone that knows a sickler or is a sickler wants to know how they can get it. Unfortunately, it’s not easily obtainable in the US, and I’ve had to go through some tricky, complicated channels just to get my own monthly dose. I know that shipping medication across international waters isn’t ‘legal’, but this is one case that I will go to any measures to make sure that I stay on this path of being healthy.

I’m not sure what the holdup is, but there are hundreds and thousands of people that are waiting and desperately need this remedy. We thank you for your help, and I’m begging you to please do whatever you can to get this medication legalized and approved in the United States. This will help to bring down the cost for us (right now it’s at $55-$75/bottle) as well as enable us to be able to use our insurances to pay for it.

I’m doing my best to spread the word about Nicosan to everyone but the main resistance that I’m meeting is that it’s not FDA approved yet. Sickle cell patients are skeptical, and have been sold all kinds of ‘cures and remedies’ since we are so desperate for a solution. And yet here is one that absolutely works but doesn’t have FDA approval.

Also…why hasn’t there been active MARKETING? So many people need this solution, and yet few have even heard about Nicosan and how it can change your life. I’m getting emails from Brazil, London, Egypt and even Nigerians and other Africans, all wanting to know about how they too can get Nicosan. There is a huge untapped market out there just waiting and praying for a solution to conquer this life of pain.

Please know that whatever your efforts and sacrifices have been, they haven’t been in vain. Also know that there are so many people that need you all to push forward and go through all the necessary channels to make Nicosan the #1 treatment of choice for sickle cell patients all over the world.

Kindly let me know if I can ever be of assistance.

I have faith that with perseverance, the right direction and vision, you all will be able to make this possible.

So here is a HUGE thank you from the bottom of my heart to all the people that made it happen; the scientists, test subjects, engineers, stockholders and visionaries…thank you all! Thank you so much for all that you have already done, and for all that you are going to do. I’m expecting great things from Xechem & Nicosan.

With everlasting gratitude,

Wednesday, October 22, 2008

Nicosan Changes

Wow, you all are totally something else!

I've gotten quite a few orders ever since this started...I didn't know that so many people were interested---I would have done this a long time ago!

Unfortunately, since the 1st trial run, I've had to increase the prices slightly due to the unexpected costs on my end (Western Union/Paypal fees...those money grubbers!) If it wasn't for the high volumes I'm getting, I would be able to cover the extra charges from my own pocket---but unfortunately that is not the case. So I've had to add a slight increase to the rates.

Hopefully with the more orders we get, the lower the prices will become.
The first shipment has gone out...and I'll be sending the money on Saturday for the 2nd shipment; so if you want to get in on it there is still time.

Hope you all are doing well.

Tuesday, October 21, 2008

Nicosan Order Sent

Hello darlings,

For starters, for everyone that ordered before Sunday, I've sent the money, the supplier has received it, and has sent out the shipment as of today. So you should be getting your order in a couple of weeks. Please let me know once you have it.

Also let me know how easy/difficult the ordering system was for you, so that we can make changes accordingly to streamline the process.

Presently, I'm overwhelmed with a bunch of things going on in my personal life/school and work, so if you send me a message, and don't hear from me right away, please don't be alarmed---I will get back to you as soon as I can.

How are you doing?

Wednesday, October 15, 2008

Changes Regarding Skittles

Wow, you guys are truly the best! I've gotten so many emails in the 24 hours since it's been up...and so much overwhelming support. Thanks to those that have already placed an order; that totally surprised me. So whoever wants to jump on the bandwagon before Saturday, you can still join in.

I'm going to change the wording on the site just a tad, because of a warning that I got from one of my readers.
We all noticed that you’ve taken a step to help bring Nicosan in the US for others, but we want to you be careful, since it’s a non-registered drug with the FDA, it’s entirely possible that you could get yourself into trouble. As much as we all want to see you (or anyone) selling thousands of bottles, we don’t want you get into hot water for doing it. I think if you gathered individuals together to make a bulk purchase (like you essentially are), you might be fine, but the minute you put a PayPal link for a purchase on your website you’re getting into a gray area that probably will get you a phone call or letter from the FDA. They may never find you, but you’re better off being safe than sorry.
My father-in-law had a huge run-in with the FDA a few decades ago, and the horror stories do give me shivers! So I'm going to avoid that as much as possible. I will be changing the labels from Buy Nicosan to Donate Nicosan, it's essentially the same thing for you guys, but will just mean some maneuverability for me. In addition, I might just take the paypal thing off altogether and create a system using emails that give you the same output...it's just not going to be as convenient.

I don't want to put this blog at any risk, because I adore what I do...and Nicosan will always be secondary to my passion for telling people about living a wonderful life as a Sickle Cell Warrior. So if changes must be made in the format of the Nicosan orders; then I have to do that.

If you have any suggestions to get around this problem, that would be great. Please email me!

Tuesday, October 14, 2008

Great News: I'm a Nicosan Distributor

Hello everyone!

I keep getting inundated with emails from readers that want to buy Nicosan. So ever your loyal servant;) I've been working on getting it available for us all. The good folks that ship Nicosan from Nigeria have offered a reasonable discount for my readers. So we get Nicosan at $35 per bottle...yay! I don't know how long this is going to be for, (the price might go up depending on shipping rates, etc!)

The only drawback is that I must have 6-12 orders (bottles) to get a decent shipping rate. So here is where the fun part begins. I will be taking and combining orders every week. Every Saturday, I will send the information/money to the supplier in Nigeria. He will process and ship you your order in 2-3 weeks.

Each bottle will cost $35. Shipping on each bottle is $15, so that will take you up to $50 per bottle.

If you get 6-12 bottles however, it will be shipped per order. Here's the breakup from the supplier:

Any orders for adult Nicosan from 1-6 packs would attract a shipping rate per bottle of $15 per bottle.

Any orders for adult Nicosan from 6 to 12 packs would attract a flat rate shipping cost of $50 (not per pack}

Any orders for adult Nicosan from 13 to 20 packs would attract a flat rate shipping cost of $75 (not per pack}.

Any orders for adult Nicosan from 20 to 24 packs would attract a flat rate shipping cost of $100 (not per pack}

So pretty much, the more you get, the more you save! I feel if we order together, we have more bargaining power on the rate and the shipping, so let's get on this.

The first batch of requests is going to be a trial run, as we work out the kinks in the process. This is my first time doing anything like this...and please note: IT'S NOT FOR PROFIT! I'm experiencing such a wonderful life change because of this drug so the least I can do to pass it on.

I want you to email me directly with questions or problems. My email is located on the sidebar. You can use your bank account, credit cards and debit cards, as long as you have a Paypal account. Paypal is free and easy to use, so create an account if you don't have one.

  • Temporarily, I've set up Paypal to do this located right under my email.
  • You can also send me a check directly, but that will take longer to process. Email me for my address if that is that case.
  • If you wish to pay and have it shipped to someone else, please email me directly or change the address in the appropriate section.

We'll see how it goes.

Go to the spiffy BUY button on the sidebar to get started. Smooches!

Thursday, October 2, 2008


Happy Birthday to me!

Okay, so here's a big *womp,womp* to all the doctors that said I wouldn't live past my 10th birthday.

I'm 28! Nanananabooboo!

Wednesday, October 1, 2008

Potential Cure for Children with Sickle Cell Disease Evaluated in Nationwide Research Study

There is a study underway on bone marrow transplants in children that you or your child/niece/nephew/grandchild...etc. might be eligible for.

The NMDP and other organizations are working together on a clinical trial for children (ages 3-16) with SCD. A study like this has never been done before and it aims to determine the effectiveness of unrelated marrow and cord blood transplants in children.

The trial is facilitated by the Blood and Marrow Transplant Clinical Trials Network (BMT CTN) and is funded by multiple organizations, including the National Heart, Lung, and Blood Institute; National Cancer Institute; National Marrow Donor Program; Sickle Cell Disease Clinical Research Network (SCD CRN) and the National Center on Minority Health and Health Disparities. Potential transplant candidates and their families can visit http://www.marrow.org/ for more information. Referring physicians can visit http://www.bmtctn.net/.

Currently, marrow or blood stem cell transplantation is the only potential cure for severe SCD. Most people with SCD who have undergone a transplant have received stem cells from family members, usually siblings. In this nationwide, multicenter clinical trial, researchers will evaluate the role of unrelated donor transplants in treating severe SCD and the effectiveness of a less-intensive regimen of chemotherapy to prepare patients for transplant.

The study is looking for 45 children with SCD from around the country. There are 20 different trial sites in the US participating.

Please click HERE for more info, and have your doctor contact the study if you are interested in joining. The more participants, the better chance we have for a cure.

Contact Antoine LaFromboise for more info.

Monday, September 22, 2008

Another Nicosan Testimonial

Here's a comment I got from someone else that takes Nicosan...

Bolanle has left a new comment on your post "Nicosan Trial: Week One":

Well I believe the Nicosan is working. As for me, I heard about Nicosan
from one of the researchers in Nigeria. I used it ( even though not often) and i
found out that it worked. I kept using it regularly, and for more than a year
now, I have never had one crisis. I dont even follow up with my PHP anymore cos
i dont have a reason to go the Emergency Room.
Same here. I'm doing so well, I almost don't know what to do with myself. My pain pills sit on my cupboard collecting dust and I'm not as tired as I used to be. I just have to remember to keep taking it after a meal so it doesn't upset my stomach.

If you want more info about how to get Nicosan, feel free to email me.

Thursday, September 18, 2008

Let's Play Catchup

What's good fam? Has it really been that long?

I can't believe we are midway through Sept and I haven't posted a thing. Sorry to all the folks that emailed me, with no response---I haven't been sick, I've just be drowning in a sea of too many responsibilities.

Work: has been a bust. What started out as another contract of fun and growth has turned into an almost nightmare! It's true what they say, "Familiarity breeds contempt". There is a charge nurse on nights that has an axe to grind with me and she is seriously on my case, every single night! We are scheduled to work together almost every day, so this has made my job really difficult. I won't get into it on here (I'll save it for the nursing blog), but I've had moments in the last 3 weeks that I just wanted to quit! Thank God for good friends on the job that have kept me sane....

School: has been busy but rad. The present class I'm taking is so challenging but I'm learning alot. Last week I had to do a brochure on pulmonary fibrosis...I got the highest grade in the class, it was so fetch! I'm planning on getting an A on this class, so I'm really putting my nose to the grind.

Relationship: has been great. Norio is such a blessing in my life, don't know what I would do without him. He actually switched his job to work nights too, so that we both would be on the same schedule, and I must say, being both nocturnal has its perks! Now we schedule are breaks at work together and I can vent all night long...lol! Today after work we went to test-drive cars and found the perfect fit for both of us. Now we just have to come up with the money!

Nicosan: flipped me out one night! I don't know if it was the combo of taking Nicosan on an empty stomach or if I was just feeling ill, but I totally threw up 10 minutes later (at work!) I've been kind of wary ever since, but nothing else has happened---maybe it was just a fluke. So now I'm taking it with my meal...right in the middle of dinner, that way there is food coating it on all sides.

Sickle Cell: is down and out. No episodes, no crises, no pain. Go Nicosan!

Okay, so that's the scoop on me---what about you guys?

Tuesday, August 26, 2008

Hydroxyurea vs Nicosan

Jay sent me a question that I think some other people might have. So we are going to do a comparative analysis on the two medications

My doctor recently put me on Hydroxyurea. I was hesitant taking it because of the long term side effect of leukemia, but in the end I took it. I've been on it since May, and since May I still was getting sick and in the hospital. Then my doctor increased my dosage. My boss is from Nigeria and told me about Nicosan, Ive never heard of it before, so I started to read about it and that's how I found you. What do you think about Nicosan and Hydroxyurea?

First of all Jay, let me correct your misconception. Hydroxyurea (or Hydrea) was used primarily for the treatment of myeloproliferative (cellular abnormality) diseases like leukemia. The problem is that this treatment might trigger another rapid cell growth (which is a cancer pre-cursor).

Personally I would never take Hydroxyurea, although several people have told me that it works for them. Nicosan is my drug of choice and it's been treating me very, very well. I'm going to break the pros and cons of both of them down just so you get a better picture.

  1. Adjunct chemotherapy drug (don't know about you, but I'm anti-cancer anything!)
  2. Method of action: increases production of fetal hemoglobin cells by increasing nitric oxide levels (so pretty much, you can just take a soluble form of nitric oxide and cut out the hydrea altogether. Look up L-Arginine)
  3. Very toxic to the liver and kidneys. Causes bone marrow suppression
  4. Needs regular blood monitoring to check your platelet, BUN, liver enzymes and CBC levels
  5. Long term use hasn't been fully studied..who knows what will happen for those that have been on it for 10 years?
  6. It is shown to reduce your rate of crises by 30% after you've been on it for 6-12 months.
  7. Causes fertility problems in men and crosses the placental barrier in women, so you MUST not get pregnant or nurse while on it or you will have a jacked up baby
  8. The side effects are atrocious and range from hair loss, loss of appetite, drowsiness, nausea, vomiting, diarrhea, constipation, stomatitis, mucositis, anorexia....the list is practically endless. I've never talked to anyone that hasn't exhibited at least one side effect.
  9. Has FDA approval although the pharmaceutical company keeps announcing that "the benefits outweigh the risks". (*rolleyes*)
  10. #9 means that your insurance will pay for it and all you have is the $5-20 copay. If you don't have insurance, it ranges from $80-$200 depending on your dosage.
  1. Natural and herbal. A combination of 3 herbs: Piper guineenses seeds, Pterocapus osum stem, Eugenia caryophyllum fruit and Sorghum bicolor leaves.
  2. Method of action: initiates an anti-sickling effect. The cells you do have won't assume their sickle shape. This means no crises---yay!
  3. Naturally processed through the body. Doesn't damage your organs in any way.
  4. No extra blood monitoring needed besides your usual H&H levels
  5. Long term use hasn't been studied---but all these herbs have been used in African countries for thousands of years.
  6. Reduces the rate of crises by 80% after you've been on it for 30-90 days.
  7. Only side effect is flushing (blushing) due to increased blood circulation. Most people (like me) don't even exhibit this.
  8. Has orphan drug status in the US although it's fully approved in Nigeria. The only thing holding up FDA approval is the big pharmaceutical companies that want a cut of the pie. Since they don't own the patent, they can't charge you outrageously for it. The company that makes Hydroxyurea would loss their advantage in the field. They would rather us all suffer while they block the drug from being approved and keep lining their pockets.
  9. #6 means you will have to buy it out of pocket and order it from Nigeria until the FDA lets it be sold in the US under the phytochemical name of Hemoxin.
  10. If you are paying out of pocket and shipping from abroad, it's pricier than Hydrea but this stuff actually works! 1 bottle of 30 pills costs around $60.00 and this includes shipping.
So....which do you think I picked? I'm on Nicosan, and it works for me.

For more information, read the tabs of the two drugs in the sidebar under File Cabinet. Good luck with your decision. Stay strong, stay positive and stay blessed!

Wednesday, August 20, 2008

I'm Alive

Okay, so I didn't plunge 14,000 feet to my death! It was soooooo fun that I'm ready to do it again. Norio was being so 'cautious' and he doesn't believe in risking your life for no reason...he didn't even go up! Personally it's one of the most exhilarating things I've ever done. Live outside the box darlings!

Right now, it's wet and soggy outside...I must say, I absolutely HATE Portland weather...it's summer for crying out loud! I really want to go lay on the beach in Mexico somewhere for a whole year just to get my sun on and payback for this lousy cloudy, rainy year.

My arm and leg are hurting today, nothing major, just L2s...I think it's because of the coldness seeping into my bones. Grrrr. Pain, pain, go away! I'm on vacation dammit!

Have a great week everyone!

Saturday, August 16, 2008

Excite Me...

I'm writing this from work, and in approximately 5 hours, my vacation starts! It's only 10 days long and so far the only thing I have penciled in is skydiving. Yep, you read right---SKYDIVING!
You're probably wondering why a sickle cell warrior as myself would want to skydive??? As my friend Rhea would say, "Why not?"

I've always wanted to skydive, ever since I was a kid. I saw my first skydiver when I was 8 and I've been a junkie ever since. Heights don't scare me, falling doesn't petrify me and dying doesn't give me shivers. Come on---after living and dying several times with sickle cell, nothing can be as scary as that. Trust. I think I'm a prime example of the type of person that should skydive. I want to do it because I can. Because out of a life of mediocrity, I crave something exciting. I'm always doing the 'right' thing and this experience is going to be Vixen doing bad all by herself.

None of my friends presently are up for it. And Norio---he's definitely against it, actually using words like 'forbid'. Ha! As if. I think I will just go by myself this week and be back in a flash with the pix and video to prove it.

So skydiving this week. Who wants to come?

Friday, August 8, 2008

Vacation Plans

Hello darlings,

Do you like my spiffy new signature? I saw it and totally fell in love with it. Bonjour from the beautiful city of Toronto...I had such a blast and I can't wait to go back. The trip was lovely---no sickness whatsoever, the people are great and it's truly a city of multiculturism. I almost want to move there!

School has been a bust, my new teacher is a PIA, but I'm hanging in there tryng to keep my 4.0. I'm just 2 classes in and I'm feeling overwhelmed already. I think it's more time management than anything, I spent 6 hours reading the new Acheron book versus working on my paper. What can I say...work hard, play harder!

No news on the Nicosan front. I've been taking it as religiously as I can being that I'm not a pill person and so far it's been treating me really well. I barely have pain anymore...probably 10% versus the 85% of the time that it used to be. If anyone is interested in ordering this, please email me and I'll send you the info.

I'm looking at my work schedule and it looks like I have 10 days coming up with nothing to do. I want to do something really cool and exciting, but airfare is a beeyotch right now, darn energy crises. Flying to Toronto was 600 bucks even though I bought the ticket hecka early.

Anyway, here are my options for my August trip.

1. Stay in Portland, drive up to Seattle for a few days to see my cousin.
2. Fly to Alabama to see my best friend who just got her heart broken.
3. Fly to NJ to annoy the heck out of my sister the Diva.
4. Go on one of those last minute trips to an exotic locale like Barbados, Mexico or St. Barts to get more stamps on my passport.

Leave your thoughts after the jump.
Hugs and I hope you are doing well.

Tuesday, July 15, 2008

Catch Up

Wow, it's been 10 days since my last post. Part of the reason is that I've been out of town chilling with my family in Indiana. The flight's were long but I had no problem. No crises and very minimal pain to speak of.

Another thing happening is that I've been revving up for my mom's arrival. She's coming from Nigeria to visit for a week...and it's been such a stressful thing getting my crib "Parent Worthy".

See when I'm home by myself, I have clothes lying around, papers unfiled and not everything in it's proper place. My mom is a organization queen, and I know that anything not in it's place is going to get a derisive snort from her. Other than that, I think the visit will go well.

Another thing is that I'm planning Norio's Birthday Bash this Saturday. It's kind of a weird timing because my mom is here and I'm scheduled to work that night, but the show must go on. I'll let you all know how that turns out. And of course, my second course started in school this week and the reading material alone is time consuming. I just can't wait for school to be over already!

Sickle cell wise, I've been doing great. I got 6 more bottles of Nicosan from my mom, so I"m stocked up for the rest of the year.

I hope everyone is doing well. Summer is usually my best time of the year---I don't know if it's just me or other sickle cell warriors as well, but those months are usually idyllic with very little pain. Come fall, it's a whole new ball game.

Saturday, July 5, 2008

Stop Delays in Treatment of Sickle Cell Patients

This article is from the medical journal ED Nursing printed July 1st, 2007. I'm putting it on here so that more medical professionals can see that it's not wrong to treat sickle cell patients properly. The most pertinent parts for me will be in bold. Hola at Dr. Tanabe for hitting the nail on the head and standing up for sickle cell patients. I would love to meet the good doctor in person and just say THANK YOU! Please spread the word.

Stop delays in treatment of sickle cell pain patients

Believe what the patient tells you

Imagine being in horrible pain and knowing exactly what medication you need to control it, coming to an ED . . . and waiting an hour and a half for relief. Researchers recently looked at 612 patient visits for sickle cell disease (SCD) having an acute pain episode, and they found that took an average of 90 minutes for administration of an initial analgesic.

Emergency clinicians often perceive patients to be drug seeking, says Paula Tanabe, PhD, RN, the study's lead author and research assistant professor in the department of emergency medicine at Northwestern University in Chicago. "Nurses must begin to believe the patient," says Tanabe. "Patients with sickle cell disease do not want to come to the ED. By the time they do, they have exhausted all other interventions under their control." (Anonymous RN, please take note)

Provide better care to patients with SCD by increasing their personal knowledge base of the pathophysiologic complications and course of the disease, advises Tanabe. "ED clinicians receive very little education about sickle cell anemia. Until recently, the average age of death was in the 40s," she says.

SCD is a serious chronic disease often associated with many serious physiologic complications including strokes, acute chest syndrome, pulmonary complications, and acute pain episodes, says Tanabe. Two common mistakes are making wrong assumptions about the severity of their pain and not being aggressive enough in managing it, says Kathleen A. Delaney, MD, vice chair of the Division of Emergency Medicine at the University of Texas — Southwestern Medical Center at Dallas. "Sometimes they don't look like they're in pain because they are chronically in pain," she says. "There is no particular test that tells us whether they are having a crisis or not. We need to accept what the patient is saying and treat the pain aggressively."

To improve care of SCD patients, do the following:

• Develop an individual care plan for patients:"All patients deserve excellent pain management," says Tanabe. For patients with frequent visits to your ED, create an individual care plan with them, ED clinicians, and the patients' primary care provider, advises Tanabe. Emergency nurses can be important members of teams to establish individual patient care plans that outline analgesic management specific to each patient, she adds.

• Assign a high triage score: The study showed that a low triage score was the strongest predictor of long waits to receiving an initial analgesic. Rapid and aggressive analgesic management has been associated with decreased need for hospitalization, says Tanabe. "At a minimum, it is important to assign the correct high-priority score and do whatever possible to facilitate placement in a treatment space," Tanabe says.

• Do a thorough assessment: Don't make the mistake of assuming this is "just another pain episode," warns Tanabe. Patients often present with chest pain that may indicate acute chest syndrome, which is associated with high mortality, and other-life threatening complications include sepsis and stroke, she says.

Often patients with SCD are labeled as "difficult" or "drug-seeking," says Tanabe. "Emergency nurses can help contribute to softening this attitude," she says. Ask patients these questions: What methods did you use to control your pain at home? When did the pain episode begin? Where is the pain? Is this typical of your pain episodes? Do you require transfusions? When was the last time you were transfused? Do you have a health care provider that you see on a routine basis? What analgesic agents are usually effective to decrease your pain in the ED? How many and what doses?

"Typically, we are very impressed when patients can remember their medications and doses," says Tanabe. "The same should be true for patients with SCD."

• Do frequent reassessment of pain after analgesic administration: This reassessment can help achieve rapid pain control and help decrease the need for hospitalization, says Tanabe. "Additional doses should be provided within five to 10 minutes," she says. (I wish this was the case!)

• Be concerned about infection: SCD patients are susceptible to multiple bacterial infections including salmonella and pneumococcal sepsis, warns Delaney. "They develop infarctions of their spleen, so they are essentially asplenetic," she says. "They should get pneumococcal vaccine, which is not usually done in the ED — but sometimes we act as their primary care doctors."


*Tanabe P, Myers R, Zosel A, et al. Emergency department management of acute pain episodes in sickle cell disease. Acad Emerg Med 2007; 14:419-425.

Friday, July 4, 2008

Going to School with Sickle Cell

One thing that I've learned with having this ailment is that I can't let it scare me or change anything about the way I want to live my life. I'm very determined and want to achieve all my dreams, goals and aspirations. I won't let anything stop me from attaining my full potential---and schooling was always on my list for something that was important.

There are alot of resources especially in the US for people going to school with a disease. Guess what---you are qualified as a handicapped person with sickle cell. This means that your school, teachers, administration and classmates can't discriminate on you based on your illness. Also, they can't flunk you out based on it--in fact, they are supposed to help you achieve your goals.

Now I'm not saying sit back and waltz through school without lifting a finger---hells no! But certain rules and expectations can be bent for you, as long as you have a documented medical history. The first thing you need to do is register with the Health Department at your school. This is that little building around the clinic where no one ever goes to unless they need condoms.

They are supposed to cover assistance for handicapped students. You let them know you have SCD, provide your doctor's statement and register for the service. When you fall sick, some schools have it that you can just call the Health Department and they will provide you with excuse slips or contact your teachers.

In addition, you have got to be proactive and stay on top of things. I know that I fall sick every 3-4 months like clockwork, so my homework is always done in advance, I read the syllabus and start drafts on all my papers while I'm healthy so that I have less to stress about when I'm sick. My friends also brought my assignments to me in the hospital and I was hooked up to painkillers and IV fluids studying for tests and completing homework.

It takes alot of guts and determination to keep ahead but you know that you have that cushion for when you do fall sick. And it's good student practice anyway.

Remember, you don't want a pity party thrown on your behalf. But if all you need are few extra days to finish a paper that you weren't able to get to, because you were sick and in the hospital, then by all means, go ahead and let your teachers know. Most people are sympathetic and will get on board with helping you out.

Another perk is that you are probably eligible for a bunch of scholarships that "healthy" people don't get. You can apply for all those Blood Disorder, Cancer, Sickle Cell and Handicapped scholarship. Plus your life story is a built in statement of purpose and might make you nail that scholarship:)

So go ahead---register, go to school and get that degree. I've known people with sickle cell becoming nurses, doctors, lawyers, engineers and bankers. You can do it, the sky is truly the limit, set your goals and achieve them. The only thing stopping you is yourself. Stop being a roadblock to your success and your future.


Thursday, July 3, 2008

Sickle Cell Clinical Trials

I got this from Our Voice, a new sickle cell blog that just launched in the blogosphere. Go over there and say hi!

According to the Washington Post, May 29,2008, Johns Hopkins Institute
researchers developed a human stem cell line containing the mutation associated
with sickle cell anemia.

They say, "One challenge to studying blood diseases like sickle cell anemia
is that blood stem cells can't be kept alive for very long in the lab, so
researchers need to keep returning to patients for more cells to study."

Linzhao Cheng, an associate professor of gynecology and obstetrics,
medicine and oncology, and a member of the Johns Hopkins Institute for Cell
Engineering said, "Having these new cell lines available might enable some
bigger projects, like screening for potential drugs."

Would you get involved in clinical trials if you thought it would help find
a cure?Check out the link
http://www.clinicaltrials.gov/. There
might be something you could do to help researchers find a cure.

Personally, I would love to donate my stem cells to research, as beautiful as they are. As long as it wasn't too painful for them to collect they could get as many as they wanted. From what I know, gathering stem cells can be tricky business, but I wish the good people at John's Hopkins good luck with that. Hopefully they will be able to hurry up and find this friggin' cure already!

Wednesday, July 2, 2008

No Pain

Check this out---this is my first week ever since I hit puberty that I haven't had to take any narcotics. That's intense! I haven't had any L3's at all and barely any L2's. In fact, the only thing I've taken this whole week since Monday last was 600mg of Motrin a few times.

Now I don't know if it's the Nicosan or the fact that now we are having lovely warm weather, but whatever it is, WOOHOO! Oh yeah baby, I want some more of that. In fact, I want some of that everyday for the rest of my life. It's been great, I've actually had more energy than normal and went out to do stuff. I don't know how my H&H is but I know that I feel friggin' fabulous!

So here is to my first week as a relatively 'healthy' person. I hope there are many more to come.

Tuesday, June 24, 2008

Plans and Updates

In July I have 2 trips planned, one to visit my family in Indiana and another to see my friend in Canada. I'm really excited and can't wait, but you know I'm still filled with the trepidation that every sickle cell warrior goes through when the holiday time comes around---Am I Going to Fall Sick? My last trip flying to Hawaii was filled with pains and rigors, and of course a major crises when I got home. Although it's not in my usual routine to be sick in July---there is always the first time for everything.

Today was my first day of classes, I'm finally going back to school for my advanced degree. It's so weird having to learn APA style all over again for school, but I'm sure that I'll get used to it after a while. Why---oh why do they make us use APA?

About Nicosan, alls well on that front. No major changes so far from the last report. I told my mom about it so hopefully she will score a few bottles on her way over here to visit. So all in all this has been a pretty good week for me, just a couple of minor L2s daily and nothing requiring narcs this week. Yay! Go me!

Monday, June 23, 2008

Re: Sickle Cell Drug Addicts

My, my, my that was a hot topic. I didn't even know that many people read the blog. I would like to thank Anon RN and Anon Parent for stepping up to the plate and bringing this up. Personally I hate it when people assume that just because we are on narcs we must be addicted. My prejudices do color my opinion as many other sickle cell warriors will share with you. But that topic is hashed over now so I'll let it rest. Feel free to read the comments section of the other posts to see how we left things.

Let's move on to more FUN things, shall we?

Tuesday, June 17, 2008

The Sickle Cell Drug Addicts

I'm a nurse in a NYC public hospital and we have a cohort of patients w/SC who I see in the ED at least everyday or every other day. The hospital has a SC clinic but when it closes the patients come to the ED. They don't have to wait and everyone knows them. So for the next 6-8hrs they are given high doses of Dilaudid/Benadryl (at least three rounds) and are released. Okay, the question - are they addicts? I mean I KNOW SC is a horrible disease and reading your blog only drives that home for me. But honestly as a nurse my compassion is waning. The patients wait at the desk 2-3hrs on the dot after the last dose saying they need the next. Seeing them on a daily recurring basis only decreases my compassion as well. I really would like to get your take.

No, they aren't addicts. Think of the worst pain you have ever had in your life. It could be a broken limb, labor, migraine or even the shock like twinge you get once a while when you turn your head the wrong way. Okay now multiply that pain by 1000. And imagine that it's unrelenting, constant and totally all consuming. Picture that pain not only in the affected limb but all over your body. Imagine the pain immersing every single one of your body cells, coating them like fire while a million men are drilling into your bones. You can actually feel every single cell in your body screaming in pain, you can feel with every breath the pain gets worse and worse and worse and worse.

That was just a short snapshot of what a pain crises feels like, in fact, that was just a mini-compilation in words. In actuality it's so much worse. You've been on all kinds of pain meds all your life, in fact one might say you've built a tolerance to them. See tolerance is not the same as addiction. Addiction occurs when you crave the medication but you don't have any pain at all, Tolerance occurs when you've been on pain meds for a while and your body is accustomed to the dose, so now, a dose that you consider 'high' is actually barely scraping a few shards off the pain.

At the most, the Benadryl zonks you out enough that you can ignore the pain, but it's still there like a beastly monster, waiting for an hour or so just to pounce and devour you in waves of agony all over again. Your tolerance is to the level that the Dilaudid dose just helps to take the edge off, the edge that would otherwise have you screaming and rolling on the floor in hysteric misery.

Unfortunately for you, your prescription ran out, or you don't have a high enough dose to cover the immense pain that you are feeling. The clinic is closed. You were just in the ER yesterday, but got discharged still in pain. You don't want to go back to the hospital, but you have to, because right now at this very moment, you feel like if you don't get some help, you are going to die. It's a fine line between wanting to live and wanting to die, and that's the determination that makes you go to the hospital.

The nurses and doctors remember you from the day before. The doctor tells you that you were just here yesterday and should see your primary care physician. The nurse tells you to stop messing around, she's busy and doesn't have time to deal with fakers or addicts. You try to carry on a brave front, but inside you are a roiling mass of despair. The pain doesn't even let you focus, it doesn't let you express what you really want to say. All you can do is grip your sides and pray to God for mercy.

You watch the clock, still hurting but too proud to ask for more meds. The dose the harried nurse gave you was small and didn't do much. You smile and say thank you, gritting your teeth and sweating profusely in the effort to remain civil even though this fiendish torment is owning you, claiming you, torturing you. The hands on the clock creep slowly onward until finally you realize it's almost time for another dose. Perhaps this time you will find relief from the anguishing waves of pain. Perhaps.

Alas, your wishes are in vain as this dose barely does anything more than the last did. You know you should ask for more pain meds, but the look the nurse gave you when she injected the so called 'large' dose was enough to keep you quiet. You don't want to risk rejection and apathy from the people that are supposed to show compassion to you. So you go inward, into your happy place and become zombie like, trying to float outside of your body so that the pain doesn't get you. The nurse thinks you are sleeping, and tells another, "she's just drug seeking". Those words reached you and caused your heart to break some more. Now it's not just about the physical pain, but the emotional abuse you've gotten from the hands of the 'helpful' has just made you realize how bleak your situation is. No one understands.

Finally after the last dose, the nurse and doctor concur that you are well enough to be discharged. Your pain is still there, the underlying problems aren't solved, in fact they weren't even addressed. You are about to be discharged because you got the requisite three doses of Benadryl/Dilaudid and the ER 'can't do more to help.' Because everyone knows that three doses is enough to fix you. It's enough to fix sickle cell pain and let you go home. Besides, they need the bed for sicker patients. You protest, faintly at first, then louder, "But I'm still in pain! I'm still hurting!" Your pleas fall on deaf ears and icy demeanors. You are practically shoved out the door, paperwork appearing instantly, your IV taken out and the CNA unceremoniously comes to the room and tells you she needs to clean the bed.

The pain is still intense, you can barely walk---in fact, you find yourself falling as your knees buckle down. Your hands reach forward and prevent you from landing on the floor. Your joints protest as you use them, the cold hitting you and making everything a thousand times worse. You drag yourself by sheer force of will outside, forcing yourself to just keep breathing, keep living, keep fighting. Go Vixen, go! Just take another step, just crawl one more inch.

Tomorrow is another day. Perhaps tomorrow you will find some relief from this all consuming, all encompassing agony. Perhaps tomorrow someone will throw the rule book away and treat each patient on an individual basis. Perhaps tomorrow the doctor at the clinic will give you a higher dose for your oral pain meds. Perhaps tomorrow you will come across someone that actually understands, or at the very least, has some fuckin' compassion.

But today, all you have is you. You and your pain.

Monday, June 16, 2008

Nicosan Trials: Month One

Okay, I just took my last pill from my first bottle, so I guess I've officially been on Nicosan for 30 days now. I haven't really noticed much difference besides the fact that I don't have as many L2s as I used to, and when I do, usually just one dose of pain meds sends them away.
Nicosan (Hemoxin in US), previously Niprisan or Nix-0699, is a phytochemical (ethanol/water extract of Piper guineenses seeds, Pterocapus osum stem, Eugenia caryophyllum fruit, and Sorghum bicolor leaves) being tested for the treatment of Sickle-cell disease (SCD). Nicosan, was effective in reducing episodes of SCD crisis associated with severe pain over a six-month period. Nicosan did not appear to affect the risk of severe complications or the level of anaemia. No serious adverse effects were reported.
It's a combo of herbal compounds in a capsule, so I did notice that weird capsule smell in my urine for the first few weeks, and now, either I don't notice it as much or my body is used to it.

I did come across some more information on Wikipedia---however I would pay money to get a copy of the clinical trials...so if anyone has those please pass them on. Also I'm starting my second bottle tonight, so I should probably start figuring out how to get replacements if I'm going to be on it longterm.

Some investor website keeps using my blog as an example of why people should buy stock into Nicosan---just an announcement, I'M NOT ENDORSING IT. I'm just using it and documenting my results or lack thereof, as objectively as I did with Arginine.

Sunday, June 15, 2008

Pregnancy & Contraceptives with Sickle Cell

Besides abstinence, what are the best contraceptive choices for a sickle cell warrior? For men of course that would be the condom, but for the ladies, with all the choices out there it gets a bit more complicated. You don't want to try anything that is too heavily based on hormones, because they have a risk of causing blood clots...and that is not something that someone with SCD should be messing with. So that gives a wary eye to most oral contraceptives.

I've used the Nuvaring and Patch for a while, but they stressed me out hardcore. Those PMS-ey symptoms on a regular basis are not my cup of tea. A low dose hormonal would be recommended but be sure that you assess for side effects, as everyone reacts differently to the meds. If you are planning on not having kids for a while the Intrauterine Device aka the IUD is also recommended, mainly because it has no hormones at all.

This is one of those things is based on your choice, but it's essential to talk with your docs about your concerns before you leap into one. Remember, the people at Planned Parenthood rarely come across questions related to sickle cell, so they might not be your most informed source. When all else fails, fall back on condoms, they suck but they work about 99% of the time when used correctly.

Please don't think that because you have sickle cell you don't need to be on contraceptives, that is just foolhardy. There is no way that I would wish what I have on anyone, and that includes my offspring, so I'd rather not have kids then to pass this ish on. It's better to make good decisions and choose when you get pregnant and with whom, that way you can research the HgB gene of your potential baby daddy.

Pregnancy is hard, you are high risk, but it's doable. If you want a child, just make sure that your baby daddy is prescreened for the HgbS gene because you don't want to pass sickle cell on. Amp up on your folic acid. Most people with SS report that when they are pregnant they don't have any crises and very little pain, however that is not the same for everyone. If you do have pain, you have to make sure that whatever meds you take don't cross the placental barrier or your baby would be addicted to narcs (not a cool thing btw). A good doctor will help you through the transition, and make sure that you are in a genetic counseling program as well as a high risk pregnancy group.

Hmmm, what else? If you are on Hydroxyurea, DON'T GET PREGNANT. That's a warning that is to be shouted from the rooftops. Hydrea does cross the placental barrier and your child could be affected even in the early developmental phases. Effected as in all kinds of documented as well as undocumented problems including mental and physical deficits. I know you what your little offspring to be perfect, so make sure that you double up on birth control or abstain from sex altogether if you are on Hydrea. If you do want to get pregnant, you have to get off Hydrea for several months BEFORE you try to sperminate. It has to be out of your system BEFORE you get pregnant. I cannot stress this enough.

All in all the big question is that can people with sickle cell have children? The answer, a solid loud resounding YES. You can have children, you can go through labor, delivery and childbirth, you can produce a beautiful bundle of joy. But you have to be more educated, more prepared and have more support than any run of the mill Nancy. I know a woman with sickle cell that has 6 children, and none of them have the disease. That's the kind of success story you want so be smart and line your ducks in a row before you take the plunge.

Good luck.

Monday, June 9, 2008

Swimming with Sickle Cell

I got a question from a reader in Egypt that loves to swim but has a painful episode after each swimming session.

For sickle cell warriors, my advice is not to swim in cold water. The main thing about swimming is that it drops your core body temperature, increasing the work load of your circulatory system to keep your internal temperature in a good range. In addition, you are probably decreasing your oxygen saturation with the exertion. If you go scuba diving or into the deep sea, the atmospheric pressure underwater drops and this decreases the ability of your hemoglobin to hang on to oxygen---all in all not a good recipe for a sickle cell survivor. In fact it's a direct trip to pain city, not passing go.

There are alot of people that just love the water, my guy is one of them. He's most comfortable when he's wet and just loves anything related to water. My suggestion is to try a heated pool, jacuzzi or swimming when it's warmer. Besides that I recommend the usual, hydration, taking your pain meds and avoiding stress. Personally I don't swim anymore, it's just too painful. If I must I wade in the water, but only for a short period of time and then I'm back on the beach warming up.

Milan told me she got invited to the beach and had to make excuses why she couldn't go. Personally I love to frolic on the beach, watching people, playing games, having a great time and enjoying the sun. So don't let sickle cell limit your life to that extent, go to the beach, just know your limitations regarding the water.

Monday, June 2, 2008

Dealing With Sickle Cell When You Don't Have Insurance

Okay, so we all know what a load of crap the medical system in the USA is. It's even way more difficult to deal with it when you have a chronic illness like sickle cell. This is because you have to always make sure that you have insurance, because if you fall into a period that you don't, 9 times out of 10, that's when you will have a crises. And with the crises comes the bills and the credit collectors. Thank God for caller ID.

When I first got to the US, I was covered with Blue Cross with my mom's job. However, once I hit 21, I got booted off the coverage and I had to look for insurance on my own. It was okay when I had a regular job that covered me, but falling sick alot in 2005 finally took a toll on my employment opportunities and I was without a job, without money, without insurance and falling sick every 2-3 months.

Needless to say, my credit is totally shot. But I'm not worried about it anymore. See when you are sick, and you go to the hospital, the hospital HAS to treat you. It's against the law for them not to give you treatment because you don't have insurance.

When you get admitted, make sure you let your doctor and nurse know that you want to speak to the social worker. The social worker is the key to your getting your financial situation straightened out. A good social worker will help you apply for the right programs that will get your bills paid without you lifting a finger. There are alot of charities out there that cover hospitals, and funds that you won't even know about. As long as you don't have a job and no insurance, you are in like Flynn.

If the social worker is a dumbass, be sure to mention the magic phrase, "Apply for Medicare". Everyone is eligible for Medicare, not just the old folk. You paid into that system (and if not you, your 'rents did, so get yours!). Apply for Medicare and it can retroactively kick in to cover your medical costs. As long as you apply within 90 days of your hospitalization, they will pay for it. It's your responsibility to make sure your paperwork is on point, dot your i's and cross your t's. Answer every question to the best of your ability. Use a current address and phone number (if they can't contact you, they will deny your claim.) You will be asked to show supporting documentation of your brokeness, like a bank statement and submit a letter stating that someone else (boyfriend, family friend, cousin) is supporting you and letting you live with them free of charge or with minimal expenses.

Once you turn in all the paperwork, you will be contacted by the county social worker, who will review your file and pretty much assess if you are eligible. Be honest but not stupid. For example, don't tell her you smoke weed for pain control. If she asks if you contribute anything to the household, the correct answer is yes. Even if all you buy are groceries once in a while, bus passes or tampons, you have to state that you contribute to get a higher overhead.

If you ace that interview, then you will get your Medicare package which has your card and some letters that you have to make copies of and mail to all the people harassing you with bills. They will then retroactively file claims to get the money that you *owe* them from Medicare. The only hangup is that you are allowed a certain amount per hospitalization, and if you go over that Medicare won't pay extra. I think it was $12,000 for California and anything over that got tacked on to me.

So whatever you don't pay, you can get on a payment plan with the creditors. It's better if the plan doesn't add a ridiculous interest rate every month, or if it's less than $500 bucks, that way you have a chance of paying if off. But if it's more than you can handle, just ignore them and they will eventually add it to your credit. Once it's on your credit report, as long as you don't acknowledge it as a legitimate debt, it falls off in 7-8 years (depending on your state). You can contact Experian and add a note to your file that states that it was because of medical expenses.

I know it sucks to have screwy credit, but there is not way that I'm going to get a loan to pay a $50,000 hospital bill. When you do look at the itemized hospital bill, you will seen absolutely inflated prices for everything from IV flushes to lab work. Logistically it doesn't cost that much, but a hospital is like a business and they have to make money too. I just wish they had different rates for those that have insurance versus those that don't.

So make the system work for you. Be sure to renew/reapply for Medicare every year. It's good to have it as a backup in case you do fall out of favor. Another good supplemental insurance can be found at http://www.combined.com/. Get this, these guys will actually pay you when you are admitted. There is a certain amount you get per day per hospitalization. That way you don't have to worry about going back to work just because you are broke. In addition, they have other plans that take care of the extra overhead for being sick, like prescriptions, deductibles and your co-pays. It's alot of paperwork, but then by now you are a paperwork pro.

Just remember when you are feeling overwhelmed by the bills that there is a way out. Tell the creditors to stop harrassing you and contacting you. You don't have to go through this alone and if all else fails, just automatically develop a *fuck 'em* attitude and continue on with your life.

Good luck!

Sunday, May 25, 2008

Nicosan--The Orphan Drug

Nicosan Trial: Week One

Okay, several people have voiced concerns over me getting a crises a few days after I started taking Nicosan. I truly don't believe that it was related or that Nicosan triggered my crises. I think that I was rundown, sick, dealing with the stress of the trip, traveling, the new job and strep throat. All these factors by themselves can trigger a crises, talk less of all of them combined. So let's rule out the fact that Nicosan caused the crises...that's totally not true.

My primary care physician does know that I'm taking Nicosan, although he doesn't recommend it (he would prefer I take Hydroxyurea). But I have to do what I feel is best for me and he knows this. He is going to monitor my progress with Nicosan off the record.

The medication comes in a large capsule that goes down very easily. I've taken it faithfully for a week, and I haven't had any pains at all! I don't know if it's relatable, but I'm trying to be as objective as I can. Usually I have pain minimally twice a week or more, however this week I haven't had any.

There have been absolutely no side effects, my appetite is the same, my energy level is fine and my blood work is great. My hair isn't falling out. The only documented side effect from Nicosan is flushing (like blushing on white people), but I haven't experienced this once.

So that's the update for the first full week on Nicosan.

Saturday, May 24, 2008

Connecting With Someone With Sickle Cell

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.

Friday, May 23, 2008

What the Pain Feels Like

This is one of my absolute favorite PSA's about sickle cell. Elise is totally kick ass, a warrior of the highest grade and I adore her accent. Her she talks about the pain that we sickle cell warriors go through.

If you want to watch the whole series, click HERE or visit http://www.curesicklecelldisease.com/

Wednesday, May 21, 2008

Crises #2: What Happened

Dates: May 9-17.

After spending Thursday night fighting cold and flu symptoms, Friday morning had me dealing with pain...in a major way. None of the trifecta of painkillers, (Oxycodone, Vicodin and Dilaudid) could help me, even when I majorly dosed up on the trifecta. This means that the pain was so out of control that even after taking enough meds to down a horse, I was still up and wracked in pain.

Norio took me to Urgent care and I was taken straight to the back. They looked in my chart and gave me IV Dilaudid, which didn't help. It took forever (like 4 tries) to get an IV ...they even looked on my feet, but finally they got one in my thumb. I was dehydrated, zonked out and still in pain. They transferred me to the hospital and that's where the fun stuff begins.

I was in the Progressive Care Unit for some reason, because the docs felt that my breathing wasn't on par due to the high level of pain meds I was on. On Saturday evening, Norio got a call from the docs saying that they would have to intubate me to protect my airway. Talk about something out of an episode of HOUSE.

Next thing you know, I wake up Sunday morning on the ventilator, struggling trying not to pull the damn thing out of my mouth. It was awful, it felt like a giant cactus shoved into your chest all the way down to your stomach and the machine was forcing me to breathe. The docs came to me and told me that my choices was to either stay on the vent and get sufficient pain meds, or get off it and be in some pain. They didn't want to OD me. I was like, TAKE THAT SHIT OUT RIGHT NOW! A few hours later to my relief they did. Sometime during that stint someone had stuck a PICC line in my arm (thank goodness!), which was there for the rest of the admission.

I think I was in the ICU for a few more days for observation and then I got moved to a regular med surg unit. I didn't really remember much until Tuesday when my sister flew into town to take care of me and make sure I wasn't getting kilt. (I love my family!) She stayed the whole week and is just leaving tomorrow...I'm going to miss her. She was at my bedside almost 24/7 and we talked alot, when I wasn't sleeping (which wasn't often!)

There were some more issues with pain control through the rest of the admission but by Saturday I was ready to get the hell out of there. I was sick of the vital signs, constant supervision and inability to do anything by myself. And I was sick and tired of the nurses as nice as they were and the crappy ass food. It's good to be home!

Tuesday, May 20, 2008

Crises #2 of 2008: The Triggers

First of all, let's focus on the triggers:
  1. The Trip to Hawaii: I was sick on this trip but not a major crises zone. More like "I'm warding off a major crises with rest and meds, please God don't let me get majorly sick!" I did get better towards the end of the trip though. It was a relaxing vacation, and I'm glad I went.
  2. The Flight Back From Hawaii: Was exhausting as all get out. Then on top of that, we flew into to California and had to drive back up 10 hours to Oregon after a busy day spent running errands after flying in a red eye to the mainland. That part of the trip was not thought out well, but most of the time, you plan the whole trip...and just forget about the getting home part. It was rigourous.
  3. Starting Work the Next Day: I should have taken a few days off to rest after coming back to town, but due to the fact that my insurance wouldn't kick in if I didn't work that day I had to work. New job, orientation and a full schedule.
  4. Getting Strep Throat from Norio: Some kisses actually are to die for. I caught strep from him and spent the week fighting the flu-ish bug, sore throat, cold symptoms and downing Dayquil at work. Not fun. I knew I was going to get sick.

Monday, May 19, 2008

Back Again

Well, the last week has been rough to say the least. I'm going to explore the triggers of my last crises as I usually do in my next post, but this one was really, really awful. The last time I was sick, I thought it was my worst time ever...but this time, this puts everything in a whole new perspective.

I was in the ICU---On the ventilator!

OMG, it was absolutely crazy. What's even more bizarre is that when I was struggling for life, my mom in Nigeria had this eerie dark premonition and woke up from her sleep and started praying hardcore from me. My cell phone was ringing with my friend DC from the East Coast leaving me a message and saying that I was heavily on her mind and she just wanted to see how I was doing.

I was zonked out and unconscious most of last week and finally through bits and pieces from my family and the hospital workers, I was able to piece the whole thing together. All right, I'll give you the skinny in the next post. But I just want to take this moment to thank God for life and love and family. And make sure that you appreciate every moment that you have because you never know when you will be gone.

Sunday, May 18, 2008

The Patient

I think I'm officially the only vented person that took a picture as well. What a dork!

Sunday, May 4, 2008

Nicosan Trial

Today is my 2nd day of being on Nicosan. One of my readers believes so much in this medication that he ordered and shipped it to me! Thank you for that...now let's get this guinea pig in motion.

So far, I haven't had any side effects, no sickle cell pain but I haven't really noticed a difference yet. I know the research shows that effects aren't felt until the 4th week but I want something dammit! I want something to know that it's working.

Well here is the real test, my ticker shows that another major crises is supposedly looming up in the next 4-6 weeks. So if Nicosan works like a charm, then I should skip that crises and be healthy majority of the summer.

We'll see...