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!

My First Job

For starters at my first job post graduation, I told my boss upfront that I had sickle cell and how often I fell sick. This was news that I told her at the interview before she even thought about hiring. I've done this with every other interview ever since. Boss Lady, as I affectionately called her was so cool. She made sure my schedule wasn't too hectic, refused to put me on more than 2 days in a row even if I begged for it, and whenever I needed a break from the unit, all I had to do was take a walk into her office to chat for a few minutes.

I didn't fall seriously sick until I was about 4 months on the job. By then my coworkers knew and liked me, so when I came back after being out for 10 days, they were so solicitous and worried about my health. My coworkers became like my family, and whenever I was ill from then after, I would get lots of love, cards and visits from the staff. There was one time that I was in the emergency room downstairs and had to call up to them for help because they were treating me like shit and Boss Lady went down there, gave the ER charge nurse hell and had me transferred outta there asap. There was another time that the ER couldn't get my IV so the best nurse on my unit came and got it in one shot.

I did get admitted to my unit a couple of times and both times I was too drugged out and in pain to even have any shame or embarrassment. One of my coworkers even inserted a foley catheter into me...talk about weird! I had this one admission that left me in the ICU with a face mask on getting hemapheresis on my blood. That was by far the worst admissions I'd ever had in my life. My coworkers came to see me and went back to my unit and told everyone that I was deathly ill. Boss Lady later told me that it cast a pall on the whole floor when I was really sick those few days. I would like to think that the prayers, care and support I got then from my family, friends and coworkers really pulled me through.

I did come to work sick alot of times. I just hated leaving my unit in a lurch at the last minute. and dragged myself in, achy joints and all. Usually on those days, I would take some Motrin, slap on a portable thermal heat wrap on my knees/calves and get to work. The heating pads helped with the pain immensely and if I limped, then so be it, my work was getting done.

Boss Lady even went as far as to suggest to and help me apply every year for the FMLA, so that I wouldn't keep getting reprimanded for using more sick days than I had. The Family Medical Leave Act can also be used for people with chronic conditions that still want to work. Look into it, it's a good law that prevents your job from docking your pay or reprimanding you for excused absences provided you have a longstanding medical condition.

So with my first job, working with sickle cell wasn't as catastrophic as I thought. I wasn't treated any differently when I was well, I still got the same rigorous case load as everyone else. However, I had the comfort knowing that whenever I was feeling poorly, I could tell the charge nurse, take a break or even duck out early if I needed to.

As you can tell, I loved, loved, loved my first job. Why did I leave? Well that's another story for another day.

The Ticker

The deal with the ticker is that when you see it around 3 and 4 months and I disappear for a prolonged period of time, then that means I'm usually in the hospital. In hospital=no internet=no blogging:(

Sometimes my lil sis will log in to let people know I'm alive...if not well, but at least alive. It also is a good indicator for me to pinpoint the next time I'm going to fall sick. The longest duration I've had between acute crises' was 8.5 months. Here's hoping that the next crises is 8 months away...

Genetics & Causation

If you are a carrier of the sickle cell trait, it's good to know this before you start falling in love and making babies. I will stress that it's essential to know what your partner's hemoglobin recessive gene is. Say you were like my parents, who are simply blissfully ignorant and in love, with every pregnancy you end up having a 25% chance of having a child with sickle cell, a 50% chance per pregnancy of having children who carry the trait and a 25% chance of having a child that has neither the trait or the disease.

I have 3 sisters and the math part of this was almost too precise. Some families have been known to have all their children end up having SSD...remember it's not 100% guaranteed that you will have a child with the disease, but with each pregnancy, you have a shot of passing it on.

However...if I had fallen in love with a guy that was a carrier, I think I would have married him, just not have had kids. Thankfully the love of my life is perfectly without this chromosome, so we are home free.

The College Years

After graduation, I did some college in Nigeria and then a year later my parents decided to ship us all back to the US because they figured I would get better medical treatment for my sickle cell over there than back home. I've always wanted to go back to America so I voiced no objections.

I decided to go to college in Alabama. Only problem was that it was roughly 800 miles from home. It was a tug of war but my parents finally agreed and this little birdy got to fly on her own for a change. College was different...I was out on my own, I could make my own decisions and it was my prerogative what activities I wanted to participate in.

Diva wasn't there to be the forefront of my social life, so I had to actually reach out of myself and make friends for the first time ever. My friends became my own group of sisters, we bonded together over the strangest things, late nights, spades & IHOP. We were all overachievers and motivated each other about the studying aspect.

I chose to be a nurse because over the course of my life I'd come to realise what an impact that a nurse could have on each and every patient and family member they came in contact with. It was hard---especially when during several critical times of the year my illness would act up, but my classmates and teachers both helped me to get back into the curriculum and stick to it. Yeah...that and my obvious brilliance of course;)

I was the patient hospitalized for a week that did homework in her hospital bed and studied like I was taking finals the next week. It didn't matter what my body did, I was determined not to flunk out and graduate with my classmates.

I think I freaked out my roomies/suite mates alot with my intensity but they accepted it as they accepted everything else about me. My roomie actually became Lil Mama, and she got on me whenever she felt I was violating the fine balance that maintained my health. They would all come visit me daily when I was hospitalized and we would play spades and talk about boys until visiting hours were over. Okay...I'm really waxing nostalgic here.

In 2001 I graduated with my class and with honors and a new chapter of my life finally began.

Graduation

Thanks to Diva being at every school I ever attended...I was able to have a relatively stable life in high school. She deflected the drama, created the drama and did whatever it was to take the limelight off me. People barely even noticed those weeks that I was sick---she was Ms. Popularity for a reason. I honestly do feel that she became Diva just to protect me.

Anyway, finally, I'm 16 years old and about to graduate from high school. It's my big weekend y'all, I got my hair all pimped, picked out the clothes and planned to attend at least 3 parties that weekend. I remember coming home from the hair salon with my best friend all excited on how much fun I was going to have that weekend.

Guess what? I didn't have any of it.

The most irritating thing about a crises is that it pops up just whenever...WITHOUT A FUCKIN' WARNING! It doesn't take a rain check, it doesn't make sense, it just shows up like your period, guaranteed to ruin your whole day week. I've been sick for every single major function in my life, Christmas holidays, concerts I was performing in, picnics...you name, it, Sickle Cell has showed up somewhere through it.

I fell sick on Friday night. Everyone was at the school, starting off the grad weekend with a bang and I was in the hospital, doping up on some high dose opioids. The next day was Saturday, and there was a huge function at the church that I missed. My friends came to visit, and my family but I was too delirious and drugged up to take note.

Sometime during Saturday night, I realised that it was MY FUCKIN' GRADUATION WEEKEND! I busted ass for years to graduate with honors and sickle cell can kiss my black ass, I wasn't having any of it. I told the doctor that I needed to go to graduation the next day like I needed my next breath and had to beg, plead and threaten to sneak out without permission if she didn't let me go.

Dr. Fab eventually agreed for me to go that morning, and Diva brought my graduation clothes, cap & gown to the hospital. My family came to pick me up, the nurse pumped me with my next dose of narcotics and I was off!

Graduation ROCKED! Till today I'm so glad that I went. I remember that I got to take the short cut and didn't have to march the long hallway like the others. I slept off 2 hours of my narcs in the office while the speakers were talking to us about being the children of the future. Finally, it was time to get our degrees & awards and I gingerly made my way to the front with my classmates.

I cleaned up house! There are 14 courses that a senior in high school had to take, and my school was awarding the student who received the highest awards for each class. They called me for one, then 2, then 3, and I kept up going up on stage collecting award after award after award. It was me and my darling fav rival Kemi, and together we cleaned up 13 of the 14 awards. She got whatever I decided to leave for her...lol!

My parents were so proud...their little girl was graduating! My dad kept telling everyone "that's my daughter" every time I got an award. Finally I just stood up on the stage until all the awards were done, cos climbing up and down those friggin' stairs with painful knees and legs was no joke!

I think it was the 9th award or so handed out that went to the first Other student in our class, a guy. All the male classmates stood up and gave him a standing ovation for finally breaking the girl streak...it was in Further Mathematics. I got 6 awards, Kemi got 7 and then I got certificates for being the Library Prefect (told you I was a nerd), and the editor of the yearbook/school paper.

After taking a few pictures with my friends and family, I got into the doctors car and she drove me back to the hospital, for my next pain dose and readmission.

And that folks, was my high school graduation.

Childhood: 10-16

I say weird because for some wacky reason, it was still a taboo. My parents were afraid to let anyone know that I wasn't 'normal' for fear that when I was of marriageable age, no man would want to marry me. Apparently this has happened regularly to alot of spinsters in my church, so my parents determined that keeping it the world's greatest secret was the status quo.

Big mistake!

Instead of being able to bow out gracefully from games and rigorous activity due to my illness, I became that girl, the lazy nerd who didn't want to do anything. My parents talked to my principal and I was exempt from EVERYTHING that resembled work. My classmates resented this because while they were outside slaving away during Agriculture class in the farm, I was in the air conditioned office, reading books or doing my homework. Oh yes---it did affect my social life, I became socially inept and teased regularly for being an 'efiko', aka a bookworm.

Enter my sister the Diva. She is the best kid sister a girl could wish for. Diva is a fierce, dominating and aggressive lady, she takes after all the fighting characters of our hot-blooded royal clan. She became my own personal knight in shining armor, she had no problem defending me in public and private, kicking ass and taking names from anyone who messed with her big sister. Oh my, she got in so much trouble for my sake...the tales I could tell you.

For some reason, whether it was due to diet or lifestyle, in Nigeria I didn't get that sick. At least not as sick as I used to be in the America. It was regular, but me and fam were pretty good at dealing with the crises. The hardest thing was watching how much my family ached---like emotionally broke down whenever I fell sick. From my loving Pops all the way to my youngest and most chatty sister, the whole family just got covered by a pall of gloom whenever I was languishing in the hospital. It was like being at my own funeral---ugh!

Childhood: From Diagnosis to 10

When I was four, I was diagnosed with sickle cell anemia. It was in Nigeria, way back in the 80's, and my mom was told by the doctors that I wouldn't live past childhood. I'm the firstborn child, long awaited for five years and deeply celebrated by my family for coming into this world. There is no way in hell, my mom thought, that the child that God had given her after so many years of prayer and disappointment would end up an abiku, which in Yoruba means a 'child born to die'. She was like Oh Hell No---that is not happening Doctor!

My parents did everything to make sure that I had the best health care possible. We moved to the US that same year and I remember seeing the pediatrician regularly every few months. I hated taking the Penicillin pills---Yuck, yuck, yuck! I still have flashbacks anytime I have to take antibiotics by mouth till today.

Fast forward past the years of living in my own bubble, prevented from taking part in rigorous activities, sports or even swimming. It was real awful not being able to wade at the beach while my siblings had their fun and frolic because everyone knew that come nightfall my ass was gonna fall sick.

Somehow my family managed to maintain a normalcy despite the crippling crises that assailed us every 4-5 months. When I turned 10, we moved back to Nigeria, and then it became...somewhat weird.

What is Sickle Cell?

Okay I know alot of you are probably wondering, what the flip is sickle cell? Here's my shortened personal version that should give you the skinny.

First of all, if you have the sickle cell trait, it means you are a carrier of the gene but don't have the disease. Good for you. Now just do your future kids a favor and don't get knocked up by someone who either has the disease or the trait and you won't pass it on.

Sickle cell disease is a inherited blood disorder that affects about 300,000 people in the world with 80,000 of those people in the US. About 200,000 children are born annually with it---so yeah, folks, it's not going anywhere. It's the mutation of the hemoglobin gene, the body's natural response combat malaria. When a mosquito shoots you full of plasmodium, sickle cells don't hang on to that bacteria, so you don't get malaria...that's good thing right? Wrong!

Normal red blood cells (RBCs) are shaped like perfect little donuts that fit into the blood cells swimmingly. Sickle cells are shaped like sickles...little inverted C's. When the body is under any sort of stress the heart pumps blood faster into the veins and so then the sickle cells clog up the tiny capillaries, venuoles and arterioles in the body. It's like one big ass traffic jam, the sickle cells are the ones causing the pill up and barely any cells are getting through.

When blood isn't moving sufficiently to the body cells & tissues, it isn't getting Oxygen. Oxygen is essential for life, so the affected region starts screaming like a whiny bitch...HELP! I NEED O2 STAT! The screaming for oxygen---that's when pain kicks in. Pain is the body's response saying that something is really wrong and you need to fix it. Okay, so that's what happens when just one capillary clogs up---now imagine that, in every single joint, capillary, arteriole and venuole in your body. Can you say immense pain? Think about the worse physical pain you've ever had in your life. Now multiply that by 100 and that probably still won't encompass the pain of a sickle cell crises.

Main triggers of a crises are:

• Dehydration
• Stress
  
• Infection (which causes dehydration)
• Extreme temperatures of cold & heat
  
• Pressurized vehicles like airplanes ---remind me to tell you of the crises I had on a plane, that shit was no joke!
• Any situation that compromises the level of oxygen in your body, like swimming, rigorous sports, labor & delivery etc.

So pretty much you have to avoid all those things. Like I said, it's a fine balance all the time.

Sickle cells live an average of 10 days. Normal RBCs live 120 days. So of course someone with the disease is going to be anemic...your bone marrow is constantly producing mostly jacked up cells and your spleen is working overtime to recycle those wimpy sickle cells. That's where the whole enlarged spleen comes from, super work=super muscle. A regular person has a hemoglobin count of 12-16..but someone with SSA hangs around the 8-10mg/dl on a good day and drops anything below 7 on a bad day.

When you drop low like that, the main solution they have right now is blood transfusions. And blood transfusions come with a whole plethora of their own problems. There is the fear of catching another shitty disease like HIV or Hepatitis (yeah, they say they check the blood but all it takes is one person who doesn't know they have something, or one girl having a bitchy day at work and bam, your ass is full of another disease!)

In addition to that, blood transfusions fill you up with weird ass proteins, antibodies and cells that don't play nice with each other and your body. The more you have, the harder it becomes to get a good blood match. The harder it is, the greater chance you have of having a severe blood rejection episode, throwing you into shock, coma and worse. In addition, these new proteins from the transfusions tend to stick in your capillaries with the sickle cells in your chest well causing a pesky huge complication called acute chest syndrome that gives you severe difficulty with breathing until you need to get intubated or croak.

Moving right along, pain therapy is a huge boon to SSA patients, thank whoever created painkillers! However, the drawback here is that with the high doses of narcotics you are on usually on a regular basis, you have a greater chance of getting addicted or killing your kidneys & liver. So we try to chill out on the pain meds, which means that we are in pain alot more than we let on.

Hmmm, what else? We are at risk for Pulmonary embolism, blood clots, strokes and pretty much any blood related complication you could think of. The complications are pretty much what eventually does us in. Life expectancy in the States is 43-48 (which for some reason people think is good. Oh Hell fuckin' no!) In Jamaica its in the 50s for some reason. I've always known about this life expectancy thing and lived my life like I was going to die in my 40s even though I hope to God I don't.

So...can someone please find a fuckin cure already???

Introduction

I'm an avid blogger. I've discovered blogging since 2005 and have loved every moment of it. I blog about everything, my life, my relationship, my family and my career. The only thing I haven't blogged about is my illness? Why? Probably because it's still kind of strange for me to talk about it. I hate to be pitied---so I rarely talk about having it, because for some reason, people don't know how to react when they hear you have sickle cell. Dude---it's not like I have AIDS...chill out man!

I did a search on Google and every blog directory I know---and couldn't find a sickle cell blog to save my life. It was only on Technorati that I found 8 and none of them were updated consistently or had more than 1-3 posts. On top of that they were so cheery and...unreal. They made sickle cell sound like a walk in the park, and I know firsthand that it's no joke. So here is my attempt to fill the void with the real gritty truth.

For some reason, Sickle Cell Anemia is like the ugly stepsister of genetic blood diseases. It affects 80,000+ people in the US and yet doesn't have a walk dedicated to raising funds for research. There is no red ribbon or dedication to follow through on what research that there is. It affects even more people in the world and yet it doesn't have a cure. You FUCKERS CAN CURE SMALLPOX & POLIO,--so what is so complicated about sickle cell? Jeez louise!

FYI: This ain't your momma's blog. There will be curse words, and there will be lots and lots of venting. You've been warned. If you aren't afraid, if you want to learn more...then by all means, read on.