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!