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!