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.