Energy Boost with L-Arginine

I just got my replacement bottle of Arginine in the mail today. I ran out before the replacements came and although I didn't fall sick (which I was worried might happen), I did spend the last week being really tired and exhausted. Normally I wake up at noon, chill for a couple of hours and go to work at 3, leave at midnight after putting in a long day and still have energy to hit the gym.

However the last week, it's been a chore just dragging myself out of bed in the afternoon. I found myself sleeping until 2 and dragging to work and being so tired when I got out. I'm not sure if it's the amino acid Arginine part or all the nutritional additives or a mental thing, but I really need the Arginine kick to jump start my day and give me a kick in the evenings.

So...I guess that's an update of sorts. I'm having some mild pains today L2's nothing really to write home about.

Gotta Get Goals...

Life has no limitations, except the ones you make. Life takes on meaning when you become motivated, set goals and charge after them in an unstoppable manner. ~ Les Brown

Marjie recently tagged me on her blog for this great meme including goals. Being an avid list maker, I thought this would be no problem for me, but here I am pondering what goals to actually put down. It's a meme taking over the blogosphere, and the instructions are to hotlink the origin, so I present you the blog where it all began~ Gotta Get Goals.

The quest is to list 5-10 goals with equal explanations. That's the purpose. Okay, enough chitchat---let's go.

1. Become the best version of me. I want to grow into the best person that I can be. I want to share my gifts with the world, fulfill my purpose on this earth and leave something for future generations. I want my daughter to respect me and want to learn from me the way I look up to my mother. I want to make less mistakes, learn from the past, and grow into a wonderful person. I want to become the one and only, unique woman that God intended for me to be.
2. Vixen, Wife & Mother. I never thought I had a maternal or domestic bone in my body, but the last year has proven to me that I do have great stores of love that I am fully capable of sharing. I'm not as selfish as I used to be/thought I was, and actually more responsible. I want to maintain a lovely household with good energy and wonderful children. I want to be a fabulous wife, one that my hubby is proud of, one that epitomizes the virtues of character. I want to surpass the expectations of what 'love' is and further develop a full and deeper connection with my man. I want our relationship to be one that keeps on sizzling and growing day after day, year after year.
   
3. Vixen, Author. To be more specific, a New York Times Bestselling author. I want to get published and be one of the voices of our generation. I want the words to flow as fluidly as they do in my head unto paper and for someone to see my work and go...oh yeah, she's really helped me see this differently. I want to write something that brings about some sort of change in people's lives.
   
4. Vixen, World Traveller. I'm sure this is on most peoples list, but I'm actually going to do it. The world and all it's cultures is fascinating to me and my ideal life would be to travel all over the world and write my memoirs. I want to become an expert expat and live outside of my country of origin/naturalization. I want to settle for a few years here and there, exploring different parts of the world from Australia to Asia to the Fuji Isles...I want to see it all.
   
5. Vixen, Cunning Linguist. I want to be quinti-lingual or more. In each country I travel to, I want to be able to speak and understand the national language. Thankfully the Rosetta Stone thing will help out alot.
6. Vixen, Millionaire. I want to make enough money doing what I love, and what I do well that I can eventually invest and make my money start to work for me. That way I can have the money, energy and time to focus on more important things, like the different foundations that I plan to start/help run, raising money for sickle cell research and becoming a UN Ambassador.
   
7. Vixen, Octogenarian. I want to live. I want to live far longer than the average mortality rate of people with sickle cell . I want to celebrate my 50th birthday, and see my 60th as well. I want to watch my children/grand kids grow up. I want to be one of those super cool old ladies that life is still peachy sipping on margaritas at 85. I want to live.

Okay, those are the top 7 things. Now...here's the fun part, I get to tag five people to do this. I think I'll just tag the last few people that commented on my blog. Even if I don't tag you, please do it anyway if you have a moment, it's a great way to view your future success.

Another Miracle Drug: Nicosan

Someone left this information in a comment and I just wanted some feedback.

There is a relatively new treatment for sickle cell being produced in Nigeria by an American company called Nicosan. It is based on traditional Nigerian plant based medicinal practices for the treatment of sickle cell disease.

It has been tested through phase IIb clinical trials and found to be highly efficacious. Phase III trials have yet to be completed however it was approved for sale in Nigeria based on phase IIb and toxicity studies which showed it to be completely non-toxic.

It is available in Nigeria without prescription and the cost is about $23/month. If you have a contact in Nigeria who can get a supply and send it to the U.S. that is possible. If you physician is aggressive enough there are special dispensations where unapproved drugs can be imported to the U.S. on a compassionate usage basis.

Here is a link to the company and product website. Please read the clinical trial info.

http://xechemnigeria.com/products.htm

I'm always skeptical about drugs that claim to 'cure' sickle cell but at the same time I don't want my skepticism to over-ride a good treatment. So I'm putting this out there for your input. Especially to my peeps in Nigeria. If you've heard about Nicosan, have used it or know someone that has, please let me know.

This isn't an endorsement. It's just something I've stumbled upon so if you want to try it out, use your own judgment. As for me, I'll just stick to Arginine for right now.

Sickle Cell & Cold

Today I was asked a question by a friend, "Which do you like better, hot or cold?" My answer was a vehement HOT! Not just because it's so miserable being cold but mainly because when I'm cold for a period of time (like more than 20 minutes), I put myself at a higher risk of getting pain.

This is unfortunately why I don't do anything that drops my core body temperature. Stuff like dancing in the rain, kissing in the rain or even getting in the ocean will make my joints hurt like crazy shortly therafter. Sometimes, it doesn't even take 20 minutes, I can feel the cold start seeping in from a walk through the chilly snow to my house and I know I'm going to hurt!

So I invest in lots of thermals, thick socks, gloves, scarves, coats and layered outfits. I rarely go out in the winter with just a sweater and jacket, I have to have some leggings and tights on as well, and if I have any even leg warmers. For some reason my top half feels fine, it's the extremities that do me in.

Dress warmly peoples---it's hella cold out there.

'Allo!

I worked a Double last night....my second double (16 hour shift) ever! It was actually not too bad work wise, and I was able to chill out and rest today before my next shift 2morrow. I think I'm going to be doing good for the next few weeks with work even though I plan to work hard, I will be sleeping and cranking up on the hydration tip.

Nothing to report...so far it's been a great week. So how have things been for you?

My Epiphany About Sickle Cell

When I was a freshman in college, I worked part time at the Social Sciences building for this teacher, grading reports and filing her paperwork. It was my first semester, and although I had alot of friends and acquaintances, I was still operating under my former credo (Tell No one). One day I was walking from my job to the dorm and I ran into a senior down the path. She walked right by me, then looked back at me and came running back towards me. At first, I was hella worried, wondering if maybe she was about to do something strange, but she seemed kinda normal at first glance.

"Excuse me, can I ask you a question?" she said.

"Yeah?" I replied curiously.

"Do you have sickle cell?" she asked as if she already knew the answer. My eyes almost bogged out of my head---I was so surprised. "Yeah, how did you know?"

"I just did. I have it too," she stated as she started walking alongside me. She mentioned that my eyes were jaundiced and then I noticed hers were too. Till this day I wish that I had a better memory so I could remember her name, but she talked to me for a minute, with the older sister/kid sis vibe. She was the president of the Sickle Cell Chapter in our whole district, and although she was a student, she still was proactive about volunteering for sickle cell events and meeting with sponsors and stuff. Up until that point, I was still living the "secret disease" life and noone knew I had anything.

However that short conversation with her, about all she was doing on the campus to raise awareness and all her plans for the future was enough to convince me to stop carrying sickle cell like it was a friggin' burden. She gave me her phone number if I ever needed to talk and a sheet of paper with all the sickle cell chapters' information and organizations in the area.

For me that was a moment of clarity. Here was a girl that wasn't ashamed or afraid of her illness. Here was a woman just like me that was kicking sickle cell in the ass and taking names. This was the woman I wanted to be like.

New Sickle Cell Research Findings

Whoa, check this out...guess we aren't as alone as I originally thought.

Seriously though...a VIRUS?? It sounds waaaaay X-men-ish for me but at the same time, it just might work.

10 Things Good About Sickle Cell

Okay, I'm not here just to whine and complain. So in the spirit of giving thanks, I'm listing the top 10 reasons I can think of why it's great to be a sickle cell warrior.

1. You get a free "get out of work" pass from school, work or home whenever you are feeling tired, down or sick. This can also be applied when you are feeling kinda okay but want to spend the day painting your nails, eating bonbons and reading a good book.
2. You get lots of pain pills, so if you are ever broke, you can sell them off the street for ten bucks a Vicodin (I've never done this btw!)
3. You've learned the fine art of balancing. Some people take decades or lifetimes to learn this but you have learned to listen to your body, pace yourself and rest whenever your body demands. In essence you are actually alot healthier than the type A's who just run, run, run until they stroke out.
4. You get lots of presents, flowers and teddy bears several times a year. I have a whole collection of stuffed animals I don't know what to do with.
5. You don't have to search for a cause or something to volunteer for, you already have your life's cause imprinted in your DNA.
6. You lose weight whenever you are sick. So it's like your own insurance policy against becoming overweight. When you get better, you can eat all you want to get back to your 'ideal' body weight.
7. You get reassurance on a regular basis that your friends and family love you. You don't feel like you are taken for granted. You don't feel underappreciated or not recognized.
8. You have a legalized reason for getting narcs. The immediate rush and relief you get with IV meds is enough to make you want or crave to be sick. Okay...I know we shouldn't admit it, but we are human. Narcs feel good. Narcs feel really, really good!
9. You can buy lots of warm sexy coats and cute sweaters every year and claim it as a medical expense off your taxes.
10. You learn to love life and every moment that you are well, because you've learned that in the blink of an eye it will all dissipate. So you enjoy the moments that you have!

Road Trip

I've spent the last couple of days with Norion in the car driving from San Francisco to Portland, OR. He very wisely decided to break the trip in 2 segments, allowing it only to be about 4 hours for me in the car.

I was really worried about travelling such a long distance, but now that it's over I'm glad I came along. One thing about sickle cell is that we've gotta worry about blood pooling in the legs and causing clotting issues, especially when you are sedentary for hours at a time.

I did get out every couple of hours to walk around and it didn't feel bad at all. The only drawback really has been the awful cold, rainy weather. I'm still not sure I have a viable solution to that yet, but hopefully I will come up with something soon.

You would think that having grown up in Michigan, and lived in Baltimore for so many years I would be prepared for the coldness, but truly the last 2 years in the Bay Area have spoiled my capability of what is considered dressing warmly.

I'm going to Target tomorrow to stock up on thermals and thicker socks. My ass is freezing.

Cheers.

Insomnia

For weeks now I've had a weird sleeping pattern. Generally I work late evenings from 3pm to midnight, and this is actually my dream schedule....don't have to wake up early in the morning or fight traffic getting to work. I peak in the evenings, after 7pm or so is when I get a radical burst of energy.

However for the last few weeks, I've been having difficulty falling asleep...staying up later and later, and having to wake up still no later than 1 to get to work. Even right now it's 6am and I'm still up writing.

I know the L-Arginine is supposed to give you wicked bursts of energy but damn...this is putting me into overdrive.

Checkin' In

What's up fam?

It's been a week and surprisingly I've been well. Very well in fact. Nothing much to report...I think the L Arginine is really giving me a boost nowadays. It's like my own personal crunk juice/spinach.

Speaking of spinach, when I was younger in high school, the house mistress of my dormitory used to gather all the sickle cell students in her quarters and make us nightly a foul tasting, bitter brew that was supposed to 'cure' sickle cell. My parents believed in that hardcore and I drank that shizz faithfully to no avail, I still fell sick.

The house mistress, bless her heart would come to see me in the hospital and BRING with her some of that tea. Mary Jesus and the orphans it was sheer torture trying to keep that down on a nauseated and pain filled body. I'm so glad I graduated from that school.

So with the Pro Arginine, I'm having a field day, it's tastes so good compared to all the other concoctions I've ever tried. Hopefully the results are going to be longterm.

Double Whammy

I'd been skating on thin ice for weeks, dealing with daily pain and my eyes were definitely juandiced. I knew I was about to fall sick, the question was when. 2 weeks ago, I was thrown into a crushing series of L3's uncontrolled by meds. This hit me right after work, when I was on the way home. I could attribute it to the change in weather, but all I know is that my ass was laid out in pain.

Norio took one look at my face and said, "You're going to the hospital." For once I didn't argue, just gingerly put my shoes on and a thick coat. It was a fast admission, and I was in lala-land approximately 45 minutes after I got into the hospital. My hematocrit was 7.5, which for me is low but not low enough to transfuse. The ED docs wanted to admit me anyway, so I went for it.

I was hooked up to a Fentanyl PCA, which left me dealing with hardcore constipation and drinking prune juice like water. The first few days were a blur of myriad images and hallucinations, the only constant was Norio's soothing presence. I remember one time I was zonked out fighting demons in my nightmares, and all I could hear was his voice talking to the nurse, and that was enough to calm down. By day 4, I was lucid, and day 6, I was ready to come home. I hate being in the hospital, I feel like my life is being wasted with every minute I'm a patient there.

My discharge was on Friday, and I spent the weekend recuperating, gearing up for work on Monday. On Sunday I had a burst of energy and decided to clean the apartment from top to bottom, the dead flowers were really starting to bother me. I even went ahead and made dinner, slipping into sexy lingerie before Norio came home.

Except by the time he got home an hour later, I was shivering under the blanket, heat blasting on 90 degrees. He was surprised to find me decked out in a sexy outfit, but unfortunately I couldn't use it, I was in that much pain. Grrrrr!

He took me to the hospital a few minutes later (yes, I did change my outfit), and then I went through my hellish ER experience. That's a story for another day. I was in the hospital for a whole 'nother week, and even I wanted to throw in the towel when 2 days after my blood transfusion I still wasn't feeling better. Add to that, my HR department let me know that if I was out of work for more than 30 days I would lose my job...thanks fuckers!

Added to that, there was some family drama going on---people really do have bad timing. The bright spots were that I once again felt the outpouring of love from my family and friends, even my former boss sent me a huge gift basket. I was more than ready to go home when the Dr. asked me, I didn't even wait for him to finish. The nurse pulled out my PICC line and it was like losing my best buddy, that PICC line helped me when all my veins crapped out.

All in all, I was home for the weekend and then had to drag myself into work on Monday.

The Wonder of Nitric Oxide

Norion's dad sent me a forward a few weeks ago about L-Arginine that he had gotten from a fellow scientist researching the benefits of L-Arginine and nitric oxide to cardiovascular conditions. In addition, someone had left a comment on a previous post about L-Arginine weeks ago that was around the same time. Serendipity was pointing that I look into this. The more I read up on it and did research, the more information I found about this wonderful amino acid.

L-Arginine is the semi-essential amino acid that has been shown may help in the effects of cardiovascular disease and many other inflammatory conditions. It's the major source for nitric oxide synthesis.

Not that many people with sickle cell know about it, however, it's been shown in reduce the crippling crises and pain that we usually go through. One of the main attributes of Nitric oxide is that it prevents cells from sticking together, makes the blood vessels more pliable & elastic as well as keeping the blood flowing freely. It's like Hydroxyurea, without all the nasty chemotherapy drug side effects. Can I get a hells yeah!

The compound is specially formulated with Vit C, B Complex and tastes like dilute grape juice to improve memory and mental agility, and give you energy. The only side effect is mild diarrhea and most people don't even get that. Compared with the 35 debilitating effects of Hydrea, this is definitely one for the game books.

It's sold as a nutra-ceutical, so it's over the counter, no prescription needed. Be sure to get the Pro Argi 9-Plus formula as shown above, because that the one that is specially formulated for those with sickle cell. Pretty much you take a scoop of that in 4-8 oz. of water twice a day, regularly on an empty stomach. Arginine takes on the properties of whatever food you take it with, so don't mix it with juice or food, just water! That way, it will flood your system with pure, wonder working NO (Nitric oxide).

Okay, I just started taking it, so as your guinea pig, I'll report back to let you know how it goes. Wish me luck!

If you want to do some research on this for yourself, here are some helpful places to start:

http://www.scinfo.org/SickleNOarticle.pdf

http://medicineandman.com/blog/2005/07/06/arginine-deficiency-in-sickle-cell-disease-causes-hemolysis/

http://www.pslgroup.com/dg/36776.htm

http://www.pslgroup.com/dg/3E992.htm

http://www.pnas.org/cgi/content/full/99/2/552?ck=nck

http://query.nytimes.com/gst/fullpage.html?res=9A0CE2D61231F932A25752C1A9649C8B63&sec=&spon=&pagewanted=1

I'm Baaaaaack!

What's up fam? What's good?

Yeah, I'm back in the flesh, better than ever, with only 2 units of blood (ick, ick) added to my veins. In addition, I had to have a PICC line placed as well as 2 rounds of PCA and the pain was excruciatingly debilitating...but what doesn't kill you only makes you stronger to kick ass another day.

One of my main issues is that I really tend to over exert myself at times. I over extend, love to work out at the gym and then have a full time work schedule and a busy, fun life. I don't want to be the fluff sitting on my couch eating bonbons because I'm anemic, I want to drag myself out of the house and DO STUFF!

So when I stop listening to my body and start doing whatever I want then of course my body starts tripping out. Then I just pop painkillers, ignore the pain and keep doing what I'm doing. Which just leaves me more worn down, tired and sick at the end of the day. You think about 27 years I would finally learn.

Not.

I think it's going to take me the rest of my life to figure out the fine art of balancing sickle cell with everything else on my plate and still do everything I want to do this lifetime. I can't imagine how crazy it's going to be next year when I add school into the mix...*wink*

Alright, thanks for all the good wishes and to my sister for holding down the fort. Thank you all for your comments, calls and emails...you all are so sweet! I will gist more about my double admission (that's NEVER happened to me), but for now I just want to sit back, kick it and smell fresh air and think, damn, it's good to be alive!

Sick

Vixen is sick she has been in the hospital for the last two weeks hopefully she will be back home this week
this is kafo her sister

Here We Go Again

Just when I started thinking I was going to be doing great for a while.
Just when I started getting into the groove of this exercising thing.
Just when I started taking Pro-Arginine and feeling great.
Just when I started getting used to my hours at work.

Just when my life starts getting normal again.

BAM!

I fall sick. With an H&H of 4.3/12.9, I was delirious, weak and in pain.
So now, 10 days later, I have to pick up the pieces, get my strength back and start all over again. It's enough to keep me down and out.

But still I rise.

Bummer...

Trepidation

I have this weird feeling in my leg. It first started in my thigh, like a tight muscle. I had Norio massaging it last night with some relief but I could still feel a knot there. Today the next symptom was tingling. It's on the same leg but the tingling is in my left foot and toes with a weird numbness. I'm worried about this. Worried because it sounds like a possible blood clot that may have migrated from the thigh to my foot.

Or it could be nothing at all. I hope it's nothing at all.

I didn't mention it to Norio, but I'm very worried. I have a doctors appointment on the 24th, so hopefully it will be staged or better by then. Sometimes it's hard knowing so many complications of sickle cell---then every single little thing sends your mind whirling in a thousand different directions. Only time will tell.

I hope it's nothing. Nothing at all.

Why I Don't Take Hydroxyurea

Last year, after numerous bouts of falling sick, my doctor practically ordered me to give Hydroxyurea a shot. Also known as Hydrea, this is one of the medications that has been known to reduce the incidence of sickle cell crises'. When she explained it to me, it sounded good, but as soon as I had the script filled and in my hands, I started trembling.

For some reason, my skin crawled and I recoiled from accepting the two large canisters for 300 pills. I had done my research, and the list of side effects was monstrous, however she assured me that 'most people don't have side effects.'

I got home and Norio and I read the whole packet, front to back, and the more I read, the more discouraged I got about taking the medicine. Developed originally as a chemotherapy drug, Hydrea has the potential of preventing crises by actually killing off the neoplastic 'sickle cells' and prevents the developed ones from taking the sickle cell shape. Since it's the clumping of the shape that causes a crises, it's been known to reduce crises' by as much as 50%.

Except it's a cancer drug.

It's a cancer drug. Ick, ick ick! That alone comes with it's own list of complications. The list is so long it's atrocious to call it a medicine. I was having thoughts of my hair falling out, horrible GI symptoms, nausea, vomiting, dehydration, exhaustion, more anemia, constipation, diarrhea, skin turning pale, insomnia, cough, soreness, fever, chills, back pain, black tarry stools, bleeding, confusions, convulsions, seizures, blackening of nails, sores in the mouth, fatigue, itching, numbness & tingling. And that was just the stuff that didn't sound deadly.

I just really felt so scared to take it. It seemed like I would be putting poison in my body to try and rid me of this ailment. There had to be another way---there just had to be. Norio and I prayed fervently for some conviction before I even tried taking it and for some reason, the only one we got was a strong reaction NOT to take it.

I know that Hydrea has worked for some, and many will laud it's apparent helpfulness. But those two canisters sit at the back of my closet, untouched and unopened. This warrior has spoken.

Pain Can Kiss My Ass

Meet Elise...isn't her attitude so fuckin' incredible?

Random Thoughts

What's up peoples! I'm here, alive and kicking.

I'm taking it easy this whole weekend. I've been on a constant roller coaster of activity the last few weeks, and finally I just had to take time out for me---to rejuvenate and recharge my batteries. So I turned off my cell phone, stocked up on herbal tea and chilled with Norio as well as a few books in my TBR (to be read) pile.

I forced myself to go to work on Friday even though I wasn't feeling particularly well. I'd been dealing with L3's the night before, and had to take Motrin all through the shift just to be able to make it. Fortunately, I had a lady I was orienting, so she did all the work---I just got to cover her. My boss actually told me that I shouldn't come to work with even a twinge of pain.

Hmmm, we'll see how that goes. Norio thinks I'm so stubborn, but the truth is that I live a life of pain, and so I can't keep stopping what I'm doing, planning to do or scheduling to do just because of some pain. Pain is a fact of my life, it reminds me that I'm still alive yet another day.

Wishes...

Happy Birthday to me!

27!!

And those crazy docs said I wouldn't live past childhood.

Booyah!

Sickle Cell Medication & Drugs

I hate taking pills. I absolutely detest them. I can take them one by one, swallow them whole, but nothing gives me an enjoyment in the process. Taking pills just reminds me that I'm sick. When I'm being honest, I must say that I really don't take meds unless I'm in pain.

When it comes to pain, that is one thing I find very hard to deal with. I"m all for non-pharmacological modes of treating sickle cell, but when I'm in the middle of an L3 or greater, pass me the drugs baby.

So, in no real order, here are all the drugs I've taken in the last decade or so.

• Folic Acid: This is a vitamin that I've been taking since I started my period. It's for the increased production of red blood cells and hemoglobin and should be taken daily. Now do I take it daily? Ummm, no. Of all the pills, this is by far the easiest to take--small, yellow with no aftertaste.
  
• Motrin: It's a larger pill---my dose is now up to 800mg per pill. It's a non steroid anti inflammatory drug (NSAID) which means that it helps reducing pain caused by swelling but has no steroids. Motrin kicks ass for L2s and used in conjunction with an opioid manages to wreck havoc on an L3 as well.
  
• Vicodin/Lortab/Norco: Same family, different doses. All three are composites of a Hydrocodone/Tylenol mix, and the strength depends on the dosage. The more codeine in it, the stronger the effect. I take these only for L3s. Apparently they are easy to get addicted to.
  
• Demerol: Holy mother! Who created this shizz? Demorol is absolutely insane, total poison that totally works. It blocks the pain receptors so completely that you don't even know that you are having pain. It gives an euphoric high. For me, it makes me delirious and giddily happy, some weird concoction. It's so strong that the FDA banned it for long term pain management, because it has been known to crystallize and cause granulation of the vein. In normal speak, it turns into crystal glass and the residue stays in the your veins and makes them hard as rock. That in itself has alot of complications so most docs want to stay away from Demerol for sickle cell peeps. I used to get Demerol back in the late 90s and I still have a wonky vein that's hard in my right hand. You have to have a doc that is trained in the old school to get this prescribed nowadays. It comes with a slew of side effects, nausea, vomiting, delirium, itching, you name it.
  
• Dilaudid: This is the master of all pain drugs. Dilaudid is from the morphine family and is available in pill form as well as IV. It's not mixed with anything else, and really does work for me. I usually take 4mg. The only drawback is that I get serious side effects of anything from the Morphine family (itching!) It gets so bad that I want to scratch my skin off. So the counterbalance of the itching is~
• Benadryl: This stops the itching but has a side effect of knocking me the fuck out. I'm woozy, I'm delirious, I'm talking out of my head and spouting all kinds of nonsense. This helps though, because by the time I wake up, an L4 would have dropped to an L3 and hopefully I don't have to go to the hospital.
  

Okay, there are more out there, but these are the ones that I personally take. I will get on the soap box about Hydroxyurea but that is for a whole 'nother chapter.

The New Sickle Cell PSA

One of my friends sent this PSA to me about Sickle Cell. I wanna know why my fine face wasn't there...lol.

Working Overtime

I've really been feeling 'off' all week since I pulled a double at work. I know, I know--I shouldn't have, but the money was too good, and my birthday is coming up so I needed it hardcore. Anyway, I slept the first day after that, and pretty much rested up the next day after that, but I don't think that was enough to counteract the effects of staying up working for close to 20 hours.

My mom says that I bring the crises down on myself---for not taking it easy. I HATE taking it easy, it's hard enough having SS without sitting out on the sidelines of life in the guise of taking it easy. Sheesh!

Okay, I know she's right, if there is one big issue I have---it's lack of self control. I can't say no when my body is telling me no. Here's what the convo with my body vs. me goes like.

Boss: Vixen, do you want to work a double?
Body: Oh hell no, you only got 6 hours of sleep last night and you are already tired. You need to go home and rest.
Me: Well, the money will make it worth it.
Body: What good is money when you are racked out in pain?
Me: Shush, I'll be fine, I'll just pop some pain meds
Body: You're a fuckin' idiot. Say no!

Me to Boss: Yes, I"ll do it.
Body: Dumbass.

So now I'm paying for it.

Exercising with Sickle Cell Anemia

My newest fetish is hitting the gym. I love going to the gym. My doc says it's okay as long as I hydrate and don't overdo anything. There is something about pushing my body to it's limit that makes me feel absolutely invigorated. As the blood pumps through when I'm doing my cardio, I can almost imagine that it's clearing out the sickle cells and just keeping the veins nice and free flowing. I want to believe that exercise helps.

I read somewhere that it takes 12-18months to grow new veins. I'm working out my arms in the hope that it will be able to re-surface better veins so I don't have to be stuck a million bajillion times when I do go to the hospital. I know people about the PICC lines and portacaths, but for some reason, I haven't gotten to it yet. I'll talk about that later.

So yeah, back to the gym, I'm already feeling the difference in the definition of my arms and muscles. I feel strong, I feel vibrant, I feel like a warrior princess. Bring it on world, I can handle anything!

Hola!

I'm here, present and accounted for. Norio and I were both laid out in pain yesterday, he threw his back out playing tennis, and I was hurting L2s per usual. I wanted to get him some Motrin but I could barely move. Good thing I keep a stash of painkillers on the bookshelf by the couch.

Sigh! Another day.

Back to Work

Today is my first day back to work since my sister's wedding. Hopefully my lazy self will be able to survive it...lol.

I've had way too many days off. Although my check is going to be thin next Friday, I'm glad that I took some time off to relax and rejuvenate. I needed it so bad.

The Ticker says...

Four months.

Gulp.

Flying With Sickle Cell Revisited

Okay everyone, as you can see I'm back, alive and well. I survived both flights with only L3s on the first one (which I quickly handled with a double dose of Vicodin/Benadryl) and L2s on the return trip. I did remember to walk every hour up and down the aisle and drank water like it was going out of style. I know the flight attendants were probably tired of my constant requests for water, but at least I stayed hydrated.

All in all it was a really great trip and I'm glad I went. Even though I thought I might fall sick, it didn't happen. Yay---go me!

September is Sickle Cell Awareness Month

I recently got this in my Myspace box and I'm passing it on to all the Sickle Cell Warriors out there.

We are asking everyone to help raise public awareness of this deadly genetic disorder. PLEASE put SICKLE CELL, You Have No Idea! in your top friends.

http://www.myspace.com/sicklecellawareness1

While sickle cell is often thought of as a "black" disease, it is not exclusively so. Yes, it is concentrated in Americans of African origin. But it also occurs in many other groups of people including those whose ancestors were Greeks, Italians, Arabs, Latin Americans, Native Americans, etc. And not just in the U.S. Whether you are affected or not please help us raise awareness. This is a global disease!!!

Thanks, in advance

There are a few things in this paragraph that I could pick apart in frustration and outrage but I'll let it slide today because I've just had 9 delicious orgasms and feel fuckin' fantastic.

So yeah, Sickle Cell Awareness Month. Spread the word.

I'm Mad at My Parents

I know all you parents are going to jump on the bandwagon and tell me that I shouldn't be mad at my parents...but truthfully, I'm livid!

Today I was in an EKG class with 2 other Nigerians who just happened to both have kids with sickle cell. The guy, his daughter of 9 months just got a successful Bone Marrow Transplant and is pretty much 'cured' of the disease. The lady, her daughter of 9 years has been dealing with it and she's determined to do everything in her power to get her daughter on the BMT list.

I'm mad at my parents for not trying harder. I'm mad at them for not pursuing finding a viable treatment and cure for me like they pursued their education, careers and religious mission. I'm mad that I'm 26 and no longer eligible for BMT due to the many transfusions I've had. I'm mad that my parents just accepted what the doctors told them back in the 80s and didn't do any additional research on their own. I'm mad that my parents decided to seek path of medical management instead of a cure. I'm mad at my parents.

See the thing is, one of their friends had a son with sickle cell and they flew him to the UK to get the BMT done back in 1984 and he doesn't have the disease anymore. So they knew about it...that it was a possibility but they let the illusion of not 'having money' stand in their way. Not having money didn't stand in the way of them both having doctoral degrees but it stood in the way of me kicking sickle cell to the curb. I have 3 sisters and none of them have ever been tested to see if they are a good bone marrow transplant match.

My mom called me today to inquire about my health and I was so upset that I almost snapped at her. I know it's not their fault...I know none of it is but I'm still mad anyway. I hope this stone of anger disappears tonight. I hope that I don't end up resenting them for a long ass time.

Flying with Sickle Cell

As you know one of the precursors of an exacerbation is flying at high altitudes. Although a pressurized cabin is highly recommended---even this manages to trigger a sickle cell crises. Usually I've been fine flying with only minor L2s if anything but usually I didn't live in California and have to fly back east on a long flight.

I always hydrate, pack both my Dilaudid & Vicodin and pray and hope I don't get sick, getting up to stretch my legs and joints often as suggested. But even then, on a trip from Baltimore to Cali with a layover in Atlanta, my ass was laid out on the floor hurting in so much pain. The plane was packed, and I needed to lay down bad. Worse I was in the center aisle, so getting comfortable wasn't an option. My Vicodin wasn't working and my Dilaudid was in my other suitcase in the overhead bin. There was nothing I could do, just retreat into my head and wipe the tears running down my cheeks. Son-of-a-cow!

The stewardess noticed my distress and I told her I had to lay down bad. The only place that I could lay down as was at the back of the plane, between the kitchen and the bathrooms. So you know everyone who was going to pee saw me rolling around on the floor in pain, but I didn't give a rat's ass. She got my Dilaudid from my suitcase, called for a medic and the airline marshal came to check me as well. Luckily there was a doctor on the flight who suggested Oxygen (which they had on board). The rest of the flight was a blur, all 2 hours of it and when we landed in Atlanta, they wouldn't let me get on my next plane.

OH HELL FUCKIN" NO!

I know the reason is cause they were worried for me, but leaving me stuck in frickin' GA was not part of my game plan. I had places to be. I refused the ambulance they brought to take me to the hospital and had to sign a paper stating that I was boarding the plane against medical advice. They told me that if I took sick, they couldn't stop the plane once they started so it was my last chance. I doubled up on the Dilaudid, kicked some Benadryl as well and slept my way through the second flight. I did have pain but it wasn't as bad as the first time, and I got escorted from the plane with a wheelchair---all the way to baggage claim where my Aunt was waiting for me.

The reason this is on my mind is because I'm flying to my sister's wedding on the 29th. And it's a straight 8 hour flight round trip. Perhaps not having a layover wasn't that good of an idea.

Ague

Hey peoples!

The good news is that I'm still not sick. The bad news is that it's been 3 months already. My intuition is silently ticking that there is a crises coming around the corner give or take 3-4 weeks. The thing about this is that although sometimes a crises catches me totally unawares, for the most part, I do get a vague sense of unease and increased fatigue prior to another one.

The unease I usually ascribe to stress and worry, and trust me, I can worry like no man's business. But the fatigue is a red flag---because when I'm consistently constantly tired, it means that my blood levels are dropping and I'm getting anemic. Which means that my body is rapidly producing more cells to make up for it. More regular RBCs mean more sickle cells in the mix too. All I need is a precursor like an infection, dehydration, my period or other and bam! Homegirl is chilling in the hospital for a few days.

Sigh.

Sex With Sickle Cell

I'm a very sexual person, so this has been one of the harder things to deal with about sickle cell. It sucks that when you are in the throes of a passionate encounter, you have a greater chance of getting and L2 or higher or even get thrown into a full blown out crises.

Here's the deal, with sex, your heart pumps blood faster through all the veins. Faster blood pumping means that any sickle cells that have been chilling in the corners somewhere causing no problems get flushed into the main bloodstream then smaller blood vessels and start to do their clogging up shit. Other factors include the fact that you are most probably hyperventilating during sex and this drops your oxygen saturation level making your body respond by pumping faster and faster. In addition, you are dehydrating via perspiration and cum so you need to hydrate before and after coitus.

I've had numerous exacerbations after sex. Sometimes even right in the middle, picture this, one minute you are having your orgasmic experience and the next minute are huddling under the covers, cold as fuck, joints hurting and pain coursing through your body like crazy. It's like going from 100 mph to 0 in less than 30 seconds. Can you imagine how your lover must be freaking out?

The best recourse is just to stop immediately, I know some people might argue to fight through the pain and just keep having sex...but check this fool, you're not the one in pain! So until you feel like a thousand jackhammers are crushing your bones mid-coitus, you have no right to try to talk me into 'keeping at it', 'finishing you off' or anything else. In fact, if you have any common decency you will try to alleviate my pain and distress and worry about your blue balls later.

Grrrr. Stupid people bug the hell out of me.

Transmission of Sickle Cell

Okay, this is for all the ignorant peeps out there. No offense, but why the fuck do you think that you can get sickle cell from your boyfriend/girlfriend? It's not an STD, it's not contagious---it's an inherited disease. Inherited! This means that if your parents weren't on the ball with getting their HbS screening done before they got pregnant with you, then one of their presents to you is the disease.

You can't get it from kissing, or from having sex with someone with SCD. You can't get it from even interacting with them---or a blood exchange. (Although why someone with anemia might be giving blood is an anomaly anyway!) It's a DNA flaw, pure and simple, a protein on the DNA chain that got substituted wrong. So unless you are creating DNA (Mothers!) it's not something to worry about.

If you don't know your HbS type, have your doctor check for you before you decide to get pregnant. And check your sperm donor's man's HbS type as well. Here's a simple chart to give you the logistics. Remember, this is the probability per pregnancy, not per child. This means that for every time you get pregnant, you have the chances. Some people think that it means that if they have four kids, only one with have sickle cell...not so! Here's the breakdown.

AA + AA
Very, very good. None of your kids will have anything to do with Sickle cell.

AA + AS
You have a 25% chance with every pregnancy of having a child that is a carrier of the trait. No biggie. Just be sure to educate your children on their HbS before they start having sex.

AS + AS
You have a 50% chance of having a child with the trait, a 25% chance per pregnancy of having a child with no trait and a 25% chance of having a child with the disease. This is what happened to my family.

AA + SS
Moving up! This is for someone with SCD, like me, having a child with someone that isn't a carrier of either the trait or disease..(Like Norio!) You children will just have AS, just be carriers of the sickle cell trait. They'll be fine! They just have to watch their SCD parent live with it.

AS + SS
Not so good. With every pregnancy you have a 75% chance of having a child with sickle cell disease and a 25% chance of having a child that's a carrier. You might wanna test your fetuses asap to check. Or consider some other alternatives to having a child together...like adoption or an egg donor. Trust me, this isn't something you want to pass to your children.

Okay, I hope that clarifies it. You cannot get sickle cell from kissing, sex or swapping bodily fluids. You can get other STDs and HIV however, so make sure you USE PROTECTION!

Celebration

My ticker officially hit the 3 month mark. Go Me! If I were to look at the glass half full, that means I've been well with no major sickle cell crises' for 3 months. If I were to look at the glass half empty, that means that another crises is around the corner.

Okay, I'm a glass half full kinda girl. So let's celebrate. WooHoo!! And today, I actually feel really, really great. Just level one pain, lots of rest and I'm drinking alot. So yeah, today is really a great day.

Working Where I Was Sick

Yesterday I worked with a nursing agency. I got floated to the unit where I was sick in December! It was weirdly uncomfortable as you can imagine. The first nurse I ran into said, "Your face is so familiar," and as soon as I said my name she exclaimed, "Yeah, you were a patient here last year right?"

Oh hells fuckin' no! She remembered? I was so embarrassed, I could feel my face tightening up. If I was lighter I would have turned red!

The shift turned out really good, she was the only one that recognized me, until I was giving change of shift report to another nurse, whose face I actually remembered. He made the same comments and this time my mortification was complete as I thanked God that he didn't have to put a foley in me when I was admitted. Luckily he was really nice and handled my pain well when I was there, cos if not, we would have had some words!

I survived both encounters with grace, I would like to think...

Diary of a Crises

I wrote this years ago, what was going through my mind when a crises hit me. It's kinda long, but really loopy. It's also really convoluted, I wrote this under the influence, I've tried editing but even I can't decipher the craziness that is the talk between my brain, my body and my spirit.

Tuesday Morning 3am

Damn it. You can't be sick again. You just got well. WTF is going on? It must be because you wasn't well all the way, it must be because you willed the pain to originally go away. Well ain't this a bitch? And you to be celebrating that you had gotten better. Got a serious makeover
and everything. Must have overdone it. That is what your useless body is telling you. Crap, you hate this body. Its so weak and useless and frail. You want to trade it in for a better one. Are you allowed to do that? What should you do?

Analysis: excruciating bone crushing pain, all over body. chest, back, arms, joints, knees. Not the head, thank God.

Plan A: Freak out, pop some pills, wake up the whole house and tell everyone.
What is wrong with you lady? You are in independent woman of the 21st century. Your new family have jobs you nonworking lazy shiester. Get a grip.

Plan B: Take some pills. Lots of pills and hope to God that they work. That way, noone is any wiser to your foolishness and you won't disturb anyone. Ok, let's go with Plan B. Sounds effective. hope it is.

2 Vicodin, 800mg Motrin, 2 hours later...

SHIT! It didn't work. What's a girl gotta do? Calm down for starters. You can see that you are starting to freak again. No crazy ass, you aren't going to die. Having 2 back to back crisis' usually means there is something internally wrong. Something that pain meds, fluid and rest can't fix. Ok, the family wakes up soon. You have to hang on till they wake up. Try to
go to sleep. Place the heating pad over your back. Think pleasant thoughts. Goosfraba.

Clock watching begins. Hang on honey, you are doing just fine. 512AM. 523. 530. Ok, they've got to wake up soon.you haven't heard anything. Did you doze off? You must have. Let's go handle Miss bladder and her jealous paramour. Damn, reduced to crawling again! At least it's not as bad as before. your face isn't touching and carpet. Yeah, go team! Shut the fuck up.

Flush bathroom. Wow, emptying that bladder awakened more back neurons. Son of a bitch! All your plans have been screwy thus far. Any more bright ideas blondie?

Hey, the door just opened.

"Hello beautiful" Hey, it's your uncle, sleep tossed hair and everything. He will fix it, he always has a plan. Note: you'm not forgetting that he called you beautiful either, but that's he's up is top priority. Focus.

"I'm sick. I think I overdid it yesterday. I'm sorry," you were able to mutter.

Instant concern flashed in his eyes. "It's going to be ok" he replies as he gives you a big hug. Your knees revolting, you straighten them willfully for that embrace. He hugs like God made humans to hug and you wouldn't miss that for the world. You hide your eyes so he can't see the
tears in yours. You can't let him see you cry, tears would hurt him more.

"Why are you sorry? It's not your fault." was the reply from your darling aunt, although technically everyone knew that some of it was your fault. Miss I-can-will-myself-to-be-well-and-it-shall-be-so. Dream on. Noone died and made you the owner and ruler of things high and low. Pie in YOUR face. HA HA HA!

"Don't worry, it will be ok," They both informed you. You believed. They solicitiously offered you more meds and you took them. Granted the timing was overkill but when in severe pain, you got to do whatever it takes. They tucked you in, made sure you were comfortable then headed out the room.

The whole session took about 5 minutes. you guess it's ok, you didn't make them late, kept is short and simple. they are now informed. Communication is key. Everthing is going to be fine. Uncle said so.

T'ante comes in a few minutes later. Water and juice, emergency numbers at work for both of them. "If it doesn't get better I want you to call 911 and tell them to take you to the Hospital". Cool, you filed away for future reference. "Thank you sooo much." Hopefully the new infusion of pain meds would knock Mr. Sickle Cell on his backside, or seclude it in one body part like it
did last time so you could isolate it in your mind and not be 'dying' all over.

15 minutes later

The shadowed figure of Uncle comes into the room following a quiet knock. "I called in late for work. I'm going to stay and make sure you are ok."

No!!! No!!! NO!!!!!!!! You vehemently oppose this new plan. Uncle HAS to go to work, Theresa the Lazy might get away with her nefarious roofing plans of the day. He had to get to work, he's the only guy that can do the job. They can't function without him. Valid protestations
were highlighted on your part, but he refuted them. Finally we had to acquescice. Neither of you stubborn bulls was giving an inch.

The Compromise: He can stay, but he can only stay for a few hours and then come in once he is assured by you that the new set of pain meds were working and that the pain was under control.

The rule suited you just fine.You knew that by 11, regardless whatever Mr Pain was decreeing at that time....homeboy was going to work. Even if you lied to get him there. You didn't come to disturb their life, you came to frolic in it, and being sick doesn''t follow the frolicking plan. you had to be better by 11, or at least well enough to fake being better. You couldn't let him sacrifice a whole working day like that....you just couldn't.

So with your fingers crossed under the bed covers, he agreed to the compromise. You could tell by the glint in his eye that he probably wouldn't leave without a fight, but you figured you would have stored upenough energy and come up with enough reasons in the next five hours.

Sometime around 8 am

Uncle came in and asked if you were ok. You muttered a response and he entered the room, sitting on the bed and fixing you with his 'stern and concerned' look.

"Vixen, I think you should take the Number 1 Stunner. (ok, he really didn't say stunner). He took the bottle from the bookcase, you instantly knowing what he was talking about. The #1 Stunner was Hydromorphone aka 4 mg of Dilaudid, guaranteed to cure all manner of painfill ills. It was the oral form of the Iv drug that you usually got at the hospital, dosed the same
amount. Being that when you got to the hospital, you were given Dilaudid, you remember that you didn't take it outside the hospital setting because you only had 3 left. Having 3 left was a better insurance than having 2 left, and you didn't want to take the #1 Stunner. You tried to
explain the logic to Uncle but was soon made to realize that:

3 Stunner in bottle+ pain = pain
2 Stunner in bottle + pain = no or less pain

Kind of like a bird in hand is better than 2 in the sky, that kind of logic. Although you came to agree in a matter of minutes. you was floored that Uncle knew about the Stunner, being that he's not in the medical profession but he knew! Plus he also knew that he would get you to do anything. Plus the pain was to such a point that you was willing to do anything to find
relief that breaking into the secret Stunner Stash was no exception. So you took the plunge and ingested your Magic Stunner Pill.

Around 908 am

The fight was over. you had unwillingly surrendered to the pain. You had to give up, there was no more left in you to fight.You had used every single medicine in your arsenal, and tried every single pain management method out there. In fact, it had gotten worse and nowhere near better. It was unrelenting, unyielding, crushing, little jackhammers relentlessly gnawing in you blood, in your bone marrow, to the core.

Crying: sometimes weeping the frustration out helps. Don't look at me like I'm crazy it's a psychological thing!!
Distraction: Tried to read some pages of mags and books. I couldn't focus.
Sleep: got a total of about 2 hours, all in segments, interrupted when the pain reached a stunning crescendo that was hard to ignore even in REM
Pain meds: Yeah, you saw the effectiveness of that
Heating: Heating pad was alternated ineffectually between all the major spots.
Ignoration Therapy: Ok, tried it too, but it was ineffective (ya think?)

So, all your skills was down to one simple fact. You were in excruciating, bone crushing pain and you needed help. You needed to get help from the experts. You needed to get to the hospital.

"Uncle, I need your help, I have to get to the hospital," you wailed.

Within seconds he was at your bedside verifying the details and running through what we needed. Uncle Lon is amazing under pressure, he takes charge and you don't have to worry about a thing. He went to get directions from his computer so that we could't get lost in our mad dash. Then he came to your room and helped you find everything that you needed, putting them close to hand and giving you the necessary privacy to throw your comfy pants and cotton shirt on. He returned moments later dressed and ready to go. He helped you put your socks and shoes on, then he went to pull the car closer, load it with essentials (drinks) and get
your seat ready.

By 916, you was safely enstowed in the car after being escorted gingerly to your seat. He has mad skills as a care taker/driver, he didn't weave lanes unnecessary and prevented any jolts whatsover that would have caused you pain. It was the smoothest ride to the hospital that you
have ever had. You pulled up to the front of the ER about 26 minutes later, and he had held your hand halfway with you holding a tight grip for dear life. The grip had instilled lots of hope and strength to you from him, and you was ready for whatever lay ahead. The journey had just begun and what lay ahead was far greater than any of you could ever imagine.

Pain Scale

Living with sickle cell means living with chronic and acute pain. I have pain every single day of my life...sometimes it's worse than others, and sometimes it's just minor twinges that I can will away. I actually have a very high pain thresh-hold, I go for as long as possible without taking pain meds because I'm trying to watch out for my liver & kidneys.

I just got home moments ago. All I did was drive around running errands, popped to the store to get groceries and carried them upstairs. I sat down...and I could feel pain splintering my back into a zillion pieces. It's nothing major, just an L1. Here's how I grade my pain...

Level One: This is probably what people with random headaches get. Level one is a 1-2 on the pain scale, and it's just twinges at at my joints, my back or my legs. Twinges usually go away after a few minutes of massage or sitting down. They are the frequent flyers though...I get level one pains several times a day...guaranteed.

Level Two: I would place level 2's on a 3-4 on the pain scale. They don't go away, it's a constant nagging pain, almost like cramps except its in the joints. Whenever I move the affected limb, it hurts like crazy, but immobilization keeps it on the down low. Motrin and heat helps out on a level 2, and they last for a few hours to a couple of days. I can function with a level two, I can still go to work (although I might be limping) and I can still go to school.

Level Three: Level 3's are real powerful motherfuckers. Sometimes L2's grow into L3's. On a regular pain scale, a L3 would be 5-6's, what is termed medically as moderate pain. It can extend over any bony prominence to the longer limbs of my arms and legs. Walking hurts like crazy and only thing that helps is Vicodin. Usually with an L3, I'm unable to go to work, just stay home, rest and hydrate and hope that it dissipates.

Level Four: Get me some Dilaudid quick! I'm totally useless in an L4, just rolling up and down on the bed hoping that the Dilaudid kicks in before I expire from the pain. It feels like 1000 men drilling into my bones and can be anywhere in my body, like my back, my limbs and my chest. Tears are rolling down my face and I'm forcing myself to take deep breaths. On the pain scale, this can be anywhere from an 7-9. L4's uncontrolled by Dilaudid send me to the hospital, because that means that I can't beat it on my own and need some hardcore meds.

Level Five: The worst of them all. This is like the dinosaur of all pain, I don't even want to live anymore, I just want to give up right then and there. I feel like I'm fighting a losing battle, like the pain is just washing over me in one crazy uncontrolled tsunami. I'm usually delirious and out of my head, just in a coma-like zone trying to separate my mind from my body. I've never had an L5 at home...it's always at the hospital, because the nurses are rationing out the pain meds and so an L4 grows to an L5. This is off the charts on the pain scale, there should be a new scale for an L5.

Thank goodness there is nothing after an L5. I wouldn't wish an L5 on my worst enemy. So...how do you grade your pain?

Jaundice

I was looking at some pictures I took last week and man, I look so jaundiced. Ick! For those of you that don't know, jaundice is a condition caused from the increased production of bile pigments in the blood. It usually affects people with all kinds of liver diseases but it affects Sickle Cell Warriors as well.

To most of us, the gall bladder is one of those inconsequential organs that one knows very little about. One of the primary functions is to store bilirubin, a by product waste that the liver creates when hemoglobin is broken down. Hemoglobin is the primary component of red blood cells (RBCs). The average red blood cell lives 120 days. The average sickle cell lives 10 days --wimps!. So when these cells die, they are broken down in the spleen and then shipped to the detoxifying unit, aka the Liver. The liver processes wastes of RBCs as bilirubin, and there is so much of it that the body can't get rid of it all. So it just sits in your bloodstream, turning your skin and eyes yellow. Not a fresh look.

I've been jaundiced all my life but sometimes it's worse than others. I can usually tell how anemic I am from how jaundiced my eyes look. And honey, they look like a cat's eyes right now.

Schmoozers

I got my first blogger award for this blog. The Real Life Drama Queen has given me the Schmoozer Award for being a blog that rocks:) Here is what she said:

You all know and love her as the writer of The Bad Girls Guide. But what not everyone knows is that she has another excellent site. It is all about Sickle Cell Anemia. She rocks that blog like she does her Bad Girls Guide! Carry on my strong sister of the heart!
Awwww, isn't that so sweet? That would have made me blush if I was lighter. That's another beautiful slice to a lovely week so far. It's been so lovely I'm not even going to bitch this week, oh wait, it just started, lol.

Anyhoo, I'm passing on the Schmoozer award to:

1. The Overeducated Nympho: Because she's really good at what she does. She redefined what being fun, free and fantastic meant all in one phrase for me. And she can schmooze like no other person than a Texan can. She's funny, witty and talks about sex. What's not to love?
2. Cloud Blue: Because she makes me think. She's schmoozing deep, and she's so realistic in true life even though we both have a history of being hopeless romantics. She just moved to a whole new city, so show her some love.
   
3. D Unspoken: For seeing life in a way that no other schmoozer can. She's eloquent, introspective and hella funny. She delves into the myriad and deep waters of poetry with soul searching results. There is always something here that I can relate to.
   

I start my first day at my future new permanent hospital gig tomorrow, hopefully I kick ass.

Mr. Wonderful

On my other blogs, he's known either as Norio or the Fiance, so in case I start inter changing them, it's actually the same person. Today is his 30th birthday and I'm up because I'm so excited to enact all the BIG PLANS I have for it.

We met online (yes to the skeptics, online dating does work sometimes). I had written a long ass 3 page ad on Craigslist with alot of pointed questions at the end. Of the hundreds of responses I got, Norio was the only one that answered all those questions. And his picture? So frickin' hot! My friend thought it might be a fake pic but I was already crushing on his pic, words and obvious intelligence. We only talked a few times before we decided to meet.

Our first date was actually the stuff of dreams, and we connected spiritually as well as mentally. His pic didn't even do him justice...he's so fine! To this day I'm in awe over how hot he is, lol. In addition to that, he's also profoundly smart/intelligent, a frickin' genius. Our relationship progressed actually kinda slowly, both of us having been burned, both of us unsure whether to trust this new person. To hear Norio tell it, he'll say that he knew I was the woman for him the first day he met me. Oh and the chemistry? Hells fuckin' yeah!

Fast forward about a few weeks into our committed phase, I told him I had SCD. I explained what it was and he listened, asking questions that made me take pause. Thinking that shortly after I had my crises, he would bolt & run (per my history), I was stunned to find out that me actually falling sick that March brought us so much closer together. He read up online everything he could about sickle cell and was proactive with the doctors in my care. He really was genuinely concerned for my well being, it wasn't an act like the others had been.

He came everyday, rain or shine and brought me little things to cheer me up. He prayed with me prior to my blood transfusions, intuitively sensing that I was freaking out internally (I always do this getting blood). He told his family & friends about me and what I was going through...and I got some warmhearted calls/visits from them as well. Wow! I was stunned.

Norio brought me home after 11 days of being in the hospital and to say we reached another level during the stress of the last few days would be an understatement. That was the moment I realized that he was really the perfect man for me. A week or so later, he confessed that he was in love with me:) Yeah...he told me first!

We've been together for almost 3 years now, and every day is a whole new experience. Sometimes we might not be doing anything at all, and yet, we're having fun. I might be in the hospital with IV lines, talking some smack from the narcs and jacked up hair, but he still finds me so attractive. He says that no matter how I look, my soul is beautiful and that's what he loves.

For Christmas he gave me this book, Back to Our Roots: Food for the Gods, Cooking for the Control of Sickle Cell Anemia and Disease Prevention by Chef Ujamaa, and it seriously has revolutionized the way I approach food and it's manifestations in my body. I heartily recommend it to anyone that has SCD or the trait, it is an eye opener.

Okay, back to Mr. Wonderful---he's determined to find a cure for me. He's done research into so many angles, hydroxyurea, bone marrow transplant, herbal concoctions, gene therapy etc. More research than I'd ever done, and I'm the one with the disease. He's really concerned and certain that we'll find a cure before I hit my forties. I know that if there is one to be had, he can find it, that's for sure. A little family background, his uncle won the Nobel Prize in the Sciences for molecular biology (something to do with RNA/DNA coding), his dad is a cornerstone is the physics field, (known worldwide), and his brother is a Harvard grad MD. Does he have the brains for it? I know so.

So today is his 30th birthday, and I have huge plans, so I must dash. But I will say one more thing before I go, God really knew what he was doing when he custom built Norio for me. And he custom designed me for him. So officially in the romance department thanks to Norio, I kicked sickle cell in the ass!

Long Day

Man...I'm feeling so tired right now. I woke up at 6AM to head downtown Oakland for a computer class for my new job. I fought through traffic, burned gas, only to find out that the class was cancelled and noone freakin called me! Grrrrr!

It did give me more time to run some Birthday plan errands and I got home around 9AM to find Norio already up. He suggested I take a nap, but I insisted that we needed to run all the errands needed before he left this weekend to the East Coast.

Mr. Wonderful & I spent the whole day running errands in 80 degree weather. I tried to stay hydrated, but I was still unfortunately unable to keep it together. As soon as we got home, I collapsed on the couch and Norio brought me a tall glass of water and told me to take something for the pain. I refused though...gotta watch out for my kidneys;)

Anyway, a short nap later and I was as right as rain. I woke up 3 hours later ready to eat the whole house. So I guess I'm just blogging this to blog.

Heh.

Exercise & Diet

One of the perks I guess of having sickle cell is that it keeps me in my ideal weight zone. My BMI never goes above 20, mainly because when I do start gaining weight...one crises has the power of taking off 10 pounds in a week. Right now I'm a luscious 135...my ideal weight for my height but I know that in the next few months I'll be down to 125 and trying to eat my weight up.

So I guess you could say it's our own little weight loss plan...hahaha. I do exercise though, because I love exercising, it gives me endorphins...and endorphins supposedly make you happy. Don't I sound like a ray of frickin' sunshine? Plus I'm trying to build up the muscle tone in my arms, so that I start having nice veins once again. It takes 12-18 months for the body to create new venous pathways, so I really have to tone up those arms hardcore.

I read somewhere that yoga is really good for people with sickle cell. This is I guess because all that stretching helps move those clumpy cells all around the body and away from the problem areas. I think I might take it up soon, and consult my own little investigation.

I'm NOT a Drug Addict

Okay America, I know there is a plethora of drug addicts out there that come to the hospital seeking narcotics, but must you lump every young Black person into that category? I can't remember how many times that I've been denied pain medication because the nurses & doctors felt I was 'drug seeking'. If you had 10 minutes of the level of pain that a sickle cell warrior goes through on a daily basis, you would be crawling the walls to get some relief.

There was one time that I even got kicked out of an emergency room because they felt that my pain was under control. This actually happened at the ER of the hospital that I worked at. NEWS FLASH: If your patient is in so much pain she has to crawl out of the ED on her hands and knees...then you are fucking not doing your job and NO, her pain isn't under control!

• To all the dozens of people that have told me that I just got pain meds and therefore can't still be in pain...fuck you!
• To the doctors that arbitrarily decide that just because 2mg of Morphine/Dilaudid knocks out your regular patients and therefore should help the pain of a sickle cell patient...kiss my ass.
• To the nurse that once told me to stop crying because I'm over 20 and have had this all my life and should know that it hurts and stop making a big deal out of it...fuck you, you damn waste of sperm.
  
• To the nurse that refused to give me pain medicine until the clock was pointing to 7 on the dot (instead of the +/- 1 hour time frame that you are allowed to dispense meds)...kiss my black ass.
  

I'm so sick and tired of people telling me in a shocked voice, "Oh you can't still be in pain!" Oh yes motherfucker I am and you need to do your job and do something about it. Listen to your patient and take care of their primary need. I really don't care if you are a crappy nurse, but if you can keep my pain under control, I will like you. Remember, there is a cusp of 5-20 minutes that you have before the pain becomes out of control. If you handle it then, you will diminish the intensity and be able to keep it under control. If you slack off, it gets worse fast and then nothing in the world can make it better short of knocking the patient out.

In case you didn't take the Pain Management class your work was offering, here are some clues of a patient in real bonafide pain.

1. Grimacing
2. Crying
3. Holding a body part
4. Moaning/groaning
5. Saying the same phrase over and over again (it's supposedly a relaxation technique)
6. Rolling around on the bed in constant rhythmic motions (another relaxation technique)
7. Telling you that he/she is in pain.
   

Pain is the fifth vital sign for a reason. Treat my pain as if it were your own and we will get along just fine.

WOOHOO! 2 months hospital free. Go me!

Sickler

Of all the words used for patients with sickle cell, the one that irritates me the most is Sickler. Grrrr! There is something about that word for me that makes me feel like an anathema, a blight or something out of the ordinary. Why can't they just say...the patient, or Vixen, or something else. Why do you have to use the word sickler?

Drop the word sickler...it just makes me feel like you're calling me names, a bad name at that.

People with cancer aren't called Cancler, those with diabetes aren't called the diabeters, people with MS aren't called the scleroser---so why the fuck are you calling me the sickler? I know it's a shorter way to say sickle cell anemic patient, but if you are going to give us a nickname, why can't you make it something cool and edifying---something that actually shows the other side of what we are faced with.

Like the Survivor. The Fighter. The Warrior. The Soldier. The Balancer.

Any of these will do.
Kthanxbye!

Romance & Relationships

I'm sure those of you with medical conditions know this, it's hard to find a good man while you are grappling with an illness. There aren't that many guys who are capable of handling a debilitating disease, and even less who are willing to.

When I was younger, I read a story of this girl who had sickle cell and met this great guy that she was in love with. However, instead of telling him about her disease, she would disappear for days at a time leaving him worried wondering where she was. Then she would come back acting like nothing happened, wanting to keep her image in his eyes as healthy. She thought that when he did find out, he would leave her, so she kept the secret as long as she could. As fate would have it, he did find out after hunting her down and finding her in a hospital almost 9 months into their relationship. She tried to break up with him, but he wouldn't let her until she broke down and told him everything. His response was so perfect, so idyllic, that for some reason, I wanted to be her. And yes, they lived happily ever after.

Alas, life isn't like the fairytale, and as you can see with my dating history, having sickle cell turned out to be a huge crutch to my self esteem and confidence. I felt like since I was not perfect, I had to bend over backwards trying to make up for my illness with my flexibility and accommodation. This backfired insanely, leaving me with a broken heart not even realizing that I was the one constantly sabotaging myself. Because I kept giving and giving in order to make up for what I thought I lacked, and the guys I was with used this weakness as way to get everything they could from me and leaving me at the end of the day.

It's taken alot of psycho analysis and self therapy to even understand what I kept doing wrong and how to make a transformation.

Because of my history, I always had the assumption that I had a short 'shelf life'. I figured that in 6 months or less, any guy would end up yesterday's news, so my best bet was to enjoy the ride and live richly & wildly, doing everything I could pack into my 48 years. I wanted to try every experience I could so that when I'm laying on my death bed I wouldn't regret not doing something. My motto became Carpe diem...and actually allotted myself 5 years of sowing my wild oats. I did pack alot much into those 5 years things that when I tell people leave them wondering what in the world was I smoking.

I'm blessed to realize that I'm mortal, and I only live once. I don't have the luxury of feeling like I'm going to live to the ripe old age of 80, so what am I waiting for. I threw caution to the winds, moved cross country because I felt like it, took up any hobby I wanted and traveled to my hearts content. Diva doesn't even know half the stuff I've done, and she shudders wondering how her darling older sister grew up to be such a vixenish hoyden.

After the Nitwit told me that he had broken up with me because he realized that he couldn't deal with my disease in the long term, I was quite livid and cussed him out with several scathing comments for being a 'yellow bellied coward'. I'm sure that other SSA peeps have been in my shoes one time or another.

Add to that, there is always the issue of when you are in a fight with said guy, he could end up throwing it in your face. "If you weren't sick all the time, we might actually be able to have some fun," or "You can't expect me to sit with you in the hospital all day long," or "I signed up for a girlfriend, not a patient," or something else along that vein. I know that at times I felt powerless and unable to voice any complaint in a few instances because at the end of the day, I felt like I wasn't good enough and so should be 'grateful' they were with me. I made excuses for each behavior or comment, somehow feeling like because I wasn't perfect I didn't deserve or expect perfection from my mate. Don't ask me why I felt that way...I just did.

I'm so glad that I grew up out of that. In time I came to realize that I was a wonderful person and deserved to have a wonderful supportive person in my life. It wasn't until I came to this epiphany that I stopped taking shit and actually yelling in my Wild Woman voice, "I'm Vixen and I have sickle cell. If you can't hang, leave me the fuck alone!" Hahahaha!

Of course, it's right around here that I met as Teri would say, Mr. Wonderful.

The Exes

Okay, now that you've gotten a little background, lets get to the nitty gritty. As you remember, there was this whole stigma in Nigeria having sickle cell, needless to say, there wasn't any romantics to write home about except for this one stalker boy in freshman year but as I said...not that important. In fact, I remember several times in Nigeria having a girlhood crush on a couple of guys, but as soon as they got home and met my buxom and gorgeous sister Diva, I was so yesterday's news.

College was the first place that I was free to write my own history. The years of being an introvert had taken their toll however, and so it wasn't until senior year that I actually started getting more social.

That's the background...now here are the guys who after my years of being highly selective and ever picky made it to the title of my boyfriend. For anonymous purposes, I won't use their real identities, but will be known henceforth as:

The Fuckwit: He was Nigerian, we met freshman year, first semester in college in Nigeria. We both moved to the US approximately a few months apart and re-connected, writing letters and talking on the phone remembering our classmates in Nigeria. I think if anything, we must have clicked because we were both foreigners in a strange new land but came from a similar background. He introduced romance into our friendship in the 2nd year, and here was when his fuckery began. The Fuckwit had a girlfriend in Nigeria, and for the next couple of years, it was this long litany of, "I want to be with you but I don't want to break up with my girlfriend". He was really wishy-washy about me, turning it on hot and heavy when things were bad with his girl back home; and then backtracking once I thought he was seriously into me. This is actually where I learned my first dating rule...Thou shalt not be into someone who isn't as into you. The demise of the relationship was when he got married to the girlfriend after promising that he was going to go to Nigeria to break up with her. See ya later Fuckwit.

The Asshole: Reeling from that disappointment, I headed into a deep serial dating phase. A few months later, I met the Asshole, a fellow nurse that was really nice initially but once you got to know him turned into a huge asshole. Diva called it from the start, but I was too naive to realize the violent tendencies he exhibited signaled deeper troubles. He was really good when I was sick (after all he is a nurse), he even managed to start an IV in my hand when the ICU nurses couldn't. However, once he got out of the hospital, he was like Hyde. Till tomorrow, I will regret that he was the guy that dis-virgined me. I won't even go into the levels of his assholed-ness. Man---that was a tragedy of epic proportions. The Goddess was watching out for me because he was history by our 6th month. Second dating rule...Thou shalt not date bad boys---they are bad for a reason.

The Nitwit: Okay, this kinda tacky because he was actually one of the smarter guys I've dated up to that point. He was intelligent in alot of things, but in relationships?? Homeboy got a big fat F. He knew how to play the 'perfect boyfriend' part that I didn't even realize that it was an act until about the 3rd month. The Nitwit was still in love with his ex of 18 months ago. Yowza. I only fell sick once during the 7 months we were together, and that was all it took for the Nitwit to have a realization that he wasn't man enough to deal with my illness for the rest of his life. He broke up with me a month after that with no good reason given, just that he didn't feel I was the 'right woman for him.' A year later he admitted that it was because he was scared of dealing with the sickle cell, it freaked him out and he knew that he would start resenting me eventually because of it. Once again, big ups to the Goddess upstairs for watching out for me. I dodged a bullet with that one. Dating rule...Thou shalt not date someone in love with someone else.

The Mind Fucker: Under normal circumstances, I would never have looked at the Mind Fucker let alone dated him. But I just moved to a new state, away from all my family and friends and guess what happens? I fell deathly ill. He came through during the 2 weeks of my hospitalization, and for the fact that I had just met him and he showed up that rose him in my estimate. Unfortunately, it turned out that his niceness was just an overcompensation for the confidence and integrity that he lacked. Because of his low self esteem, he found ways to belittle my feelings to the point that we were just playing a crazy game of emotional chess. As you can see, not a recipe for something built to last and in less than 3 months it self destructed.

Finito.


Okay...it's not over there...I've got to tell you about Mr. Wonderful. But he deserves a post all by himself.

Updates

Hello darlings,

I'm doing great, I'm back to working in the field I love and adore, so my timing is a bit off with blogging right now---less play time=less blog time.

Don't worry, I'm well. And I'll be back!