I'm Nigerian!!!

For some reason, there seems to be a lingering question of my origins. Why? What does it matter? I have no idea what the big mystery is. Anyway, to clarify matters, reduce endless speculation, and clear the air; allow me to re-introduce myself.

My name is Tosin Ola. I was born in Nigeria, raised in Nigeria, bred and buttered (as they say), in Nigeria. I came to the United States when I was 4, returned home to Naija when I was 10, and came back to the US when I turned 18. I'm assimilated into the US archetype, but am 100% Nigerian.

I actually have 13 names listed on my birth certificate; and yes, Jennifer is one of them. 

Vixen is a nickname, coined from my first blog, which did not talk about sickle cell at all but delved more into the mysteries of dating and relationships. Since I used the same blogger profile when I set up this blog, the pseudonym carried over into this blog.

Sickle Cell Warrior, or SCW, is actually the pseudonym for this blog. I refuse to accept the label of sickler, sufferer or any other name that incites pitying looks and shunned whispers. I do not think that sickle cell is something to be ashamed of, and people with diabetes are not called diabeters...so why should I be called a sickler?

Anyway...now that that is all cleared up, let's get on to more important matters:)

Near Death Experiences with Sickle Cell

I'm sure many sickle cell warriors can relate to having near death experiences. I've been deathly ill a quite a number of times, but out of those numerous admissions, only once can I quantify as being near death.

The first was in 1993. I had Malaria, Cholera and Pneumonia when I was 13 in Nigeria. I had passed out about 10 blocks from home when I was walking home from the bus stop. One of the women on the street recognized me and carried me all the way home. She didn't know exactly where I lived, but some other neighbors saw me and showed her my house. My parents rushed me to the hospital. I don't remember much from that time, but I was in the hospital for 3 weeks.

The second was in 2001. I had gotten acute chest syndrome, and it was so bad that I was placed on BIPAP. In addition my liver enzymes were so high, I was beyond jaundiced, and had to have my a hemapheresis done. This is like dialysis, but they drew out all my blood and infused me with 6 units of fresh blood. My sister said the blood coming out of my body was almost black, the doc said there was no oxygen and the cells had been completely broken down (I had very few viable red blood cells).

The third was just last year, a few days after I started taking Nicosan. It was the flu turned to pneumonia, turned to Acute chest, and I had to be placed on the Ventilator for 2 days as they forced oxygen to my lungs. When I was extubated, I was so grateful to be able to breath normally! I was in in the hospital for 10 days that time.

Most of the time, when I get really, really sick, I don't remember anything at all. I think the forgetfulness is my mind's response to how frightening the whole encounter must have been. I really fear getting into respiratory distress, pneumonia or acute chest syndrome again. It seems to be the pattern of my near death experiences.

What about you? Any near death experiences?

Happy Birthday

Happy Birthday to me! 29 years and still living!

WOOHOO!

Mission Statement

The blog is entitled Sickle Cell Can Kiss My A** and it is a positive and yet progressive platform for me, a sickle cell patient and advocate to explore all realms of thought into sickle cell. There is so much that sickle cell warriors go through (I refuse the term sickler, since having a condition like diabetes doesn't label one a diabeters, or cancer doesn't label one a canc-ler). Sickle cell warriors are in a constant fight on a day to day basis to keep ones head above water, deal with the pain, make the right decisions in life, deal with finances, medical bills and handle the backlash, negative vibes and criticism that having sickle cell brings.

But not everyone can have an attitude of gratitude; and not everyone that has sickle cell is a Christian. My life hasn't been easy with sickle cell, and yet, through all the adversities, I've been able to overcome and live my life to the fullest potential. I'm a registered nurse, have a wonderful family of my own, working on my Master's degree and holding down a full time job. All with sickle cell. My message is that sickle cell doesn't have to own you, you are not defined by your diagnosis and you can live a rich and fulfilling life with sickle cell.

Telling sickle cell to kiss off (or kiss ass), is merely an expressive, a snub to the condition that threatens to overtake ones very existence. Though not the choicest of phrases, many people resonate with this survivor mentality and attitude. Sickle cell is not a walk in the park, it's not roses and cream, it's hard, it's a struggle and only the toughest survivors can cope without wallowing in self pity, depression or emotional lows.

Painting life pretty, ignoring the tough side, and trying to hide the pain and agony that we go through on a daily basis hasn't helped with public awareness--- it's only proliferated the mentality that sickle cell warriors are 'fakers, drug addicts, lazy, malingerers'. I don't bring sickle cell down, I don't make fun of my sickle cell warriors, I just talk about the other side of it...the real side of it. The hard side of it, that all sickle cell warriors go through but don't have anyone to relate with about it.

The public doesn't understand what we go through because NO ONE WANTS TO TALK ABOUT IT. If we don't talk about it, how will they understand? I started my blog because I couldn't find a blog that told the truth...a space that talked about the daily rigors of living with sickle cell. I've talked about relationships, work, sex, exercising, swimming, flying, fear of overdosing, hallucinations...the grittier parts of life that every sickle cell warrior goes through but no one wants to share. Other sickle cell warriors all over the world can relate to this, we are all fighting the same struggle and going through the same things.

There are many people isolated and stigmatized in the sickle cell community, in the USA, and in almost every tropical nation in the world. I've had emails from readers in Islamic countries, South American, Africa countries---even Indian and Asian populations have reached out to me, sharing their stories and building a community. Everyone has their mission, and perhaps the way I speak might rankle nerves; but I'm blunt, unorthodox, unconventional, and very happy to share my sickle cell testimony with the world.

Message

So September is Sickle Cell Awareness Month...I'm sure many of you already know.

I've been out of the SSA loop for a minute but so many of my readers are going through crises right now that it's breaking my heart. I'm sending warm hugs via cyberspace to everyone that is dealing with a crises or some medical dilemma at the moment. Stay strong, keep fighting, and know that this came to pass.

In other news, I'm in a funk today, I seem to be attracting drama everywhere I turn. My home life is great, my personal life is wonderful...but everything else? DRAMA-VILLE. The Irony of it is that I usually shirk confrontation and play the peace-maker role. So getting in the middle of all kinds of conflict is new to me...and it's freaking me out.

Please send some good vibes my way. I seriously need it.

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.

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.

Live Your Pain

Scars that bind
Tears that fasten me to u
Our pain unites us
So be true to this emotion
live without shame your wounds
Carry your head high as the tears flow.
Let the tears fall and express your pain
without reservation, without regret
because the more we share our pain
the closer we become.
Pain shared is real, true, pure
I can’t fake pain, so why do I try to hide the most true part of who I am?
Why are we so ashamed of that which makes us most human?
Why do we hide our tears and fears and put on a mask that is not us?
Void of pretense pain exists to connect us, it exists to remind us, it exists to unite us.

So live your pain
Live it out loud
Let the tears fall
No shame.

By: Kafo, 2009 aka lil sis

My Nicosan Story

Here is a question that I got from a reader on Nicosan that I would like to address:

A friend of mine just started on Nicosan 12/12/08, due to lapse in medical coverage and not having monthly blood exchanges, he has been having severe pain every week, resulting in 2-3 ER visits/month since 9/08. Since taking it, the severity and frequency has been reduced, but not as much as we had hoped, and the other day had unexpected major crisis that landed him in ER for 3 days!! 1st time in 2 months. It has worked some,but this was disheartening to both of us, and I know most people are new to Nicosan, but if anyone could post about their experiences, is it working, a lot, a little, not at all? Just so we have something to compare it to? Thanks and I wish all of you "takers" well!!

I will leave this up for everyone to respond to.

This seems to be a trend that I've noticed from emails from other users of Nicosan. I had a friend that started taking Nicosan in December as well, but still had a major crises a few weeks later. He dropped out of it and went back to Hydrea. I felt bad when this happened, but each person has to find the best combination of meds and treatment plan that works for them.

I would love to hear the story of anyone that has been on this medication, even if it was only for a few short weeks.

Personally, (and you can read this in my archives), I started taking Nicosan late April, right before I went on vacation to Hawaii. I took it all vacation long, came home in May, started a new job and fell sick a few days later (Stress, strep throat, pneumonia). I was intubated on the ventilator---so yeah, it was a hard crises. I almost lost my faith in Nicosan right then and there, thinking it was a waste of time and money--or another drug peddled as a 'cure'.

Norio pushed me to continue with it, telling me that Nicosan wasn't to blame for my crises. "The manufacturer states that you should take it continuously for 30-90 days before expecting it to work right? So keep taking it regulary until then!" He theorized that my body was worn down prior to that, and the trip to Hawaii, stress of dealing with family, vacation, school and the new job had all contributed to me wearing down my body. "Now you are starting with a clean slate, your blood levels are perfect, and you will take better care of yourself, and you'll give the drug a chance to work right."

His adamant belief (and constant nagging), made me continue on taking the medication. I marked the days off on my calendar religiously, deciding to write days that I had pain, to days that I had no pain at all. Three weeks later, I realized that I hadn't had pain since I was in the hospital. I thought it was maybe because I had a new transfusion, my lytes were good etc. so I waited for the 3 month mark, when my next crises would normally hit before I believed.

3 months later...still no crises. Best of all, no daily pain. But I've had stretches of 4-5 months with no crises, so maybe it's just a fluke.

I hit the 6 month mark before I became a full believer in Nicosan. And I haven't even taken it regularly (I hate pills!). I would say I take it about 3-4 times a week...yet I haven't been hospitalized once since that last crises in May. I haven't even been to the ER!

So now, we are at the 9 month mark...and counting. My pain pills lie unused in my cabinet, I haven't filled a prescription since last year---I haven't even visited my doctor.

On May 8th, 2009, it will be one year since my last crises.

That is my Nicosan story. Now I want to hear yours! Leave it in the comment section or just email me.

Checking in

Hey everyone,

How is it going? I've been busy, working alot at the same time trying to ace my Statistics class....grrrrr, I totally hate it! So far I'm hanging on to my A average by the skin of my teeth, but it's been a struggle, I've spent more time studying for this class than I have all the others combined; and we aren't even halfway through yet!

I'm planning a big trip this year to go visit my parents in Nigeria. The tentative date is in June/July so if anyone out there is in Nigeria, I would love to meet with you, have some Maltina and hear your stories. I'll be in Lagos for half the time, and might travel the other half of the time.

I just extended my work contract here in Cali, so I'll be enjoying the wonderful sun until June. It's so beautiful out here...but atrociously expensive. I wouldn't trade the weather for the crappy rain clouds of Portland, lol.

More to come

Announcements, Announcements, Announcements!

Hey everyone,

If you have gotten your Nicosan shipment and would like to take part in a study regarding that documents the benefits of Nicosan please email me. I'm also interested in Hydroxyurea users or people that use other drugs and alternatives. I'm trying to conduct a pain survey that observes the different non-traditional treatment alternatives to create some documentation for sickle cell patients.

If you haven't gotten your Nicosan shipment yet and it's been 2-4 weeks since I emailed you (or 6 weeks since you ordered), please email me. I'm trying to figure out who has and who hasn't gotten their order.

My email is on the left side of the sidebar, for those of you that don't have it.
This announcement will stay up for a week, please scroll down for fresh posts.

Thanks!

Changing the Image

Okay sickle cell warriors, it's time for some frank talk. I'm sick and tired of hearing how lazy people with sickle cell are. I'm sure that the majority of us aren't...but for some reason, the public has the notion that we are just milking 'the system' for our pain, are too lazy to get a 'real job' and are drug addicts.

You've all heard my rants about public perception and my efforts to educate those I come in contact with. But standing on my soap box will only educate so many. We all have to join together to change the face of sickle cell.

One of my nursing friends who works in Georgia commented that she had worked with many sickle cell patients, and she made a few generalizations which provoked another one of my soap box tirades. But sitting back listening to what she was saying, I realize that although she was overly judgmental and uneducated regarding sickle cell, the sicklers that she had come across had created a bias in her.

"They just go from hospital to hospital seeking drugs. Some lay in the bed for days, sometimes weeks and don't even brush their teeth. They act like princesses, requesting all kinds of food and pain meds around the clock."

Yes darlings, I did set her straight, but at the same time, I had to listen to what she was saying. She's been a nurse for 15 years, and has taken care of scores of sickle cell patients...yet the majority had this 'victim' mentality.

We are not victims. We are survivors. Stop laying in bed having a pity party...it's just a disease. You aren't dead yet, pain is just another fact of our lives, so please, don't whine and complain that it's the end of the world.

Personally, I hate it when people pity me, it makes my skin crawl. So I do everything in my power to avoid that, and draw strength from within, living my life the best way that I can.

I'm in school, have a demanding job, maintain a good relationship and travel constantly. If I can fulfill my dreams...so can you. Having sickle cell is not the end of your world...so please warriors, no more playing the Victim card. It's so not us.

Yes, we fall sick alot, yes we visit the hospital several times a year...but that doesn't mean that we have to enjoy it. Do whatever you have to do to get out of that hospital bed and back to your wonderful life. Being in the hospital is not a vacation or a walk in the park, it's sheer purgatory and you should be doing your best to get out. Whether it's walking, washing up, eating healthy, hydrating etc...do your best to get better and back to the real world.

Live your life and please be a sickle cell warrior and example wherever you are. Do your part to change the face of sickle cell.

Thank you.

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.

WOOHOO!

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!

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?

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!

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.

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.

Mahalo!

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

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

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

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

Hope you all are doing well and aloha from Kona!