Telling Your Job You Have Sickle Cell

Okay, for starters I've learned the hard way that it's always good to tell your job that you have sickle cell BEFORE you end up in the hospital for a week.

I used to work as a personal assistant, and it was a great job that used my organizational capabilities to the max! I fell sick 2 months into the job, and was in the hospital for a little over a week, and at home the rest of the 2nd week recuperating. Needless to say, when I got back, there was a ton of work to catch up on and my boss was not pleased. She wasn't mean about it, but she stated quite truthfully that if she had known that I would disappear all of a sudden she would never have hired me, or would have hired an assistant to fill in when I was out. I learned a great lesson that day, and ever since then, I've been upfront and honest to my employers and potential employers about sickle cell.

Usually, I don't say anything until the end of the 2nd interview (the one with your direct boss), when the interviewer asks me if I have any questions. Then I state, "Just so you know, I have sickle cell anemia. It's a hereditary condition that flares up once in a while. It makes me have to use my sick days a few times a year and sometimes, when it gets real bad I have to go to the hospital."

That's it. Nice, simple and honest. This usually opens up the ground for them to ask more questions, like what exactly is sickle cell anemia, and when was the last time I was sick. I usually only tell my direct supervisor about the sickle cell, but post-crises, I tell anyone else that asks. I'm not asking for sympathy...I'm trying to spread the word and shake the ignorance and mystique that surrounds sickle cell.

Now I work in the medical field, so people 'get it' more. However, this same speech has been used to interview for an office job, a mall job and a writing gig...so it can be tailored to fit your profession as well. I've never NOT gotten hired because I told them I have sickle cell (knock on wood).

I understand the mentality of trying to hide that you have moments of vulnerability from your potential employers. But sometimes hiding the condition ends up doing more harm than good. Employers love it when they get the full idea of the person they are hiring (so states my HR sister Ms. Diva). And when they do find out later, they might end up resenting you for hiding it, and since they legally can't fire you for being sick, they make your job more and more difficult so you eventually have to quit or get sacked for something totally retarded.

Remember, if you had diabetes, lupus or MS, it would not be a huge deal to tell your boss that this is my condition, and these are my limitations. So apply that same principle to your job now. Honesty is the best policy.

The Crazy Things I Say with Narcotics

On the Sickle cell Ning forum, there is a great discussion about the crazy things that Sickle Cell Warriors say while they are on narcotics. Personally that hasn't happened to me in a while, but I do remember the days of horrendous hallucinations and crazy conversations. Whoever was at my bedside at the moment bore the brunt of it, and to my sisters, this was just perfect teasing material for later. I rarely remember what I said or when I said it, I'm so far either in pain or out of it, but my sisters still crack jokes on me till this day.

If not for the fact that my family treated it so lightheartedly, I don't think I would have been able to cope with spewing out secrets, random thoughts and whatever popped into my head while under the influence. I'm sure that some have had to go through periods of shame, embarrassment or insecurity due to this. But you know what? It's okay!

I've said some crazy things on drugs. My man states that he loves grilling me when I'm looped up because then 'I really get to know what you feel about issues!' Yep, he does take advantage of my no-filter mode...and since I don't imbibe alcohol, that's pretty much the only time you will get me with my guards down.

The most outrageous thing that I said *(which I didn't remember and deny to this day!), was that I was a hired assassin and killed people with my violin case a la Antonio Banderas in Desperado...lol. I also said I was the Princess of Egypt, and named my seven older brothers in order...threatening that my older brothers were warriors and would come beat up the nurses for causing me pain. (As you can see, I tend to have quite violent hallucinations!)...

Although I do get slightly embarrassed when I'm teased about all the crazy stuff I've said, I just roll with it...it's all part of the experience I guess. I mean, if I let it get to me, then I would become a neurotic mess each time I was faced with the thought of having to take painkillers.

Just roll with it. Let it go. It's not a big deal and comes with the territory. Or else, slap some duct tape on your mouth right after you take pain meds. ;)

Being Sick in Nigeria vs Sick in America

As a transcontinental transplant, I experienced alot of dramatic changes in how I was treated as a sickle cell patient in Nigeria vs my treatment in America.

Those of you who have read the archives know that although I was born in Nigeria, I only lived there from birth to 4 years old, and then from 10 to 18 years old. During those tween years, I was sick enough to need going to the hospital a few times. I had crises probably a max of 3 times a year, and it was usually during some highly stressful event like my birthday, going to camp, high school graduation or anything that I was under extreme stress and not taking care of myself.

I've gone to different hospitals, both public and private in Nigeria, and the care that I got varied from hospital to hospital, but I never felt stigmatized. The nurses gave me pain medication as ordered on time, and the nurses never gave me placebos or acted like they didn't care. If they had given me a dose and I was still in pain 30 minutes later, they would call the doctor on my behalf as a PATIENT ADVOCATE. If I was in so much pain that I was crying and unable to cope, they would come to the bedside, hold my hand, give me warm compresses or menthol around my knees and keep calling the doctor until they got results. They would help me get washed up, get dressed, force me to eat, even if I was hurting so much that I couldn't...and even though I resented this, my hospitalizations usually never exceeded 5 days.

Fast forward to America. My parents actually pooled all their resources into getting me to the USA, thinking that I would have access to the best medical care for my condition. Here I was, in the land of dreams, the country where people from all over the world pray to come to.

When I lived in southern Michigan and in Huntsville, AL; I was treated well. The doctors/nurses had very limited experience with sickle cell, but they had lots of compassion. They worked with me to develop the best care plan, and I went to the closest hospital whenever I had a crises, my records always transferred however, because it was the same hospital system. I felt like a regular patient, and never felt punished because of my condition.

Until I moved to Baltimore, Maryland, an area that is populated with lots of African-Americans, an area that has access to the best research in sickle cell, one of the best comprehensive sickle cell centers and a high demographic of sickle cell patients. These were part of my reasons for moving to Maryland...had I known, I should have just stayed right where I was in MI.

In Maryland, I got the worst treatment that I've ever had in my life. I was stigmatized, ignored, insulted and abused. In the ER of the hospital where I worked as a nurse; I was discharged still in pain, with no access to a wheelchair, no family member present and having to crawl to the waiting room on my hands and knees waiting for 45 minutes until my sister could come pick me up. I had many close calls with death in Maryland, once having to have a total blood transfusion (hemapharesis), and once slipping into a coma that lasted several days. When I was in the ICU, I was treated very well, but as soon as I got to the Med-surg floor, I once again achieved pariah status.

California was an extension of my Maryland experience...but the medical professionals in Cali were by far some of the most callous people that I've ever encountered. It was in a prominent California hospital that a nurse came in and told me to stop crying "You've had sickle cell all your life, you should be used to the pain by now." It was in another Emergency room that the doctor had me in pain for 11 hours because she refused to increase my dose, having me on 2mg of Morphine every 4 hours (are you effing kidding me?). Her shift ended, and it was only then that I got relief.

I could go on and on and on, and I'm sure that many Sickle Cell Warriors all over the nation can tell you the same thing. When a patient has cancer, lupus or multiple sclerosis; they are given the best possible pain treatment plan. When a patient has sickle cell---they are treated like the bacteria on top of pond scum---and made to feel like they don't matter, they are worthless and their pain doesn't count.

When I see or hear of nurses diverting pain medications, giving placebos in place of real painkillers and ignoring their patient's cries of agony, it makes my blood boil over. So yeah, if we are cynical, jaded, bitter and mistrustful of the medical system in the United States...I'm sure you now can understand.

Mayo Clinic on Nicosan

Nicosan is referenced on the Mayo Clinic website. We're moving on up!

Check it on the end here

Oldest Person with Sickle Cell is 83

[NAME REDACTED BY REQUEST] is an eighty-two year old woman who may be one of the oldest American living with Sickle Cell Disease (SCD). She is an advocate of the disease which affects millions throughout the world and is particularly common among people with ancestors in sub-Saharan Africa, Saudi Arabia, India and Mediterranean countries such as Turkey, Greece, and Italy and Spanish-speaking regions of South America, Cuba and Central America.

In the United States, Sickle Cell Disease affects more than seventy-two thousand people and about two million Americans carry the trait for SCD, a life threatening disease that creates unimaginable pain and suffering. Support is probably the most important factor in the life of the patient.

S.C.A.T.T. (Sickle Cell Action Through Technology) is geared towards helping to supplement the needs of patients who find themselves facing insurmountable health as well as financial challenges. Patients from around the country call for advice, or a word of encouragement.

Guess you'll live to be an Octogenarian too!

In the Hospital in Pain

There is a great discussion over at the Ning Sickle cell board over coping when you are in the hospital in pain and doctors don't believe your pain and ask you what your doses of pain meds are, and when you tell them, they respond "Oh that's too high, that can't be right, I'm only going to give you half of that or less..."

Usually, they ignore whatever you say, and go by whatever they feel is right---which ends up leaving you in more pain, or have your pain and anxiety increase. One of our members detailed a very sad experience where she was admitted to the hospital and was in pain for 4 days!!! The doctor pretty much ignored all her requests for better pain management. I'm sure we all can relate to that in one form or another.

Remember, you have to be your own advocate!

If you are ever in a similar situation like this (and I hope you aren't), take a page from my book. I called the Operator, asked for the Quality Improvement or Risk Management office and left a very upset message. I also told the priest, a social worker and the Unit supervisor. I complained to everyone that came into my room and raised such a ruckus that eventually the CEO of the hospital and the Chief Medical Officer came down to apologize profusely. After that I was treated like a VIP and all my needs were taken care of. Remember, a squeaky wheel gets the most oil. Take that pain you are feeling, cry, scream and make everyone realize that you are there and in pain. It's usually when someone higher in the chain of command gets involved that stuff happens.

It's sad that people with cancer have their pain managed better and are treated with dignity. Sickle Cell warriors are treated like drug addicts, stigmatized, insulted and ignored. When is this every going to end? Grrrrrr!

Sickle Cell costs $$$

A new study shows that the annual cost of medical care in the US for
people who suffer from sickle cell disease exceeds $1.1 billion. Check out the full article HERE.

They report that the average total cost of care per month per patient was $1,946, with substantial variation across age groups.

Total costs per patient-month were highest in adults, peaking at $2,853 per patient-month for patients aged 30 to 39, and lowest in children from birth through age 9, at $892 per patient-month.

On an annualized basis, the total cost of care ranged from $10,704 for children aged 0 to 9 years to $34,266 for the age 30 to 39 group.

"For an average patient with sickle cell disease reaching age 45, total undiscounted health care costs were estimated to reach $953,640," the researchers report in the American Journal of Hematology.

Roughly 80% of the costs were associated with inpatient care; 3.2% of costs were associated with emergency department (ED) use, 0.9% with physician visits, and 3.6% with prescription drugs. The remaining 11.7% of costs was from "other care," including home health and nursing home care.

Also, they note, "The high proportion of sickle cell disease costs associated with inpatient hospitalizations suggests that interventions that reduce complications such as pain crises could be cost-effective, even cost-saving."

Check out the full article HERE.