Thursday, September 27, 2007

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.

Wednesday, September 26, 2007

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

Sunday, September 23, 2007

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.

Tuesday, September 18, 2007

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!

Monday, September 17, 2007

Thursday, September 13, 2007


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.

Monday, September 10, 2007

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

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.

Saturday, September 8, 2007

The Ticker says...

Four months.


Friday, September 7, 2007

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!

Thursday, September 6, 2007

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.

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.