Sickle Cell & Your Period

I was wondering if anyone else has pain right before their period starts or during. I never was a woman to get cramps or migraines but i do get pains in my left knee right before my period starts. Lately I've been also feeling drowsy and drained.

I have said on here several times that ones menstrual cycle can trigger a crises. What I also forgot to mention was everything that goes into that combination.

You all know that sickle cell warriors are naturally anemic. This means that we already have a low blood count, less oxygen carrying ability to our cells and are at risk for fatigue, exhaustion and tiredness.

Now, when you throw in a period, your are losing blood on top of your low hemoglobin count. If you were to check your Heme counts then, it would be lower than your normal 'healthy' ranges. So being tired, sleepy and exhausted are natural states that can be exacerbated by one's menstruation cycle.

Some warriors have pain in their lower back (like me), or other joints before, during or after their period. Remember that during your period, there are alot of hormones floating around doing Mother Nature's bidding: Gonadotropin-releasing hormone (GnRH), Follicle-stimulating hormone (FSH), Luteinizing hormone (LH), Estrogen, Progesterone and of course, Testosterone.

Research has supported that these hormones contribute to ligament and muscle laxity, swelling in the joints, and collection of fluid throughout the body. All of these have the potential to cause additional pain, that one might attribute to sickle cell pain, but is actually period pain.

Of course, having a low heme count can trigger pain or a mini-crises, since your cells are not getting enough oxygen. Remember, pain is the natural body's response to stressors, a warning signal telling you that something is wrong.

During my period, things that help most are a heating pad (heat is very good!), taking naps, Motrin every 6-8 hours and sometimes when it's really bad, a glass of wine. Wine relaxes the muscles in the body (including the cramping uterus), and makes me relaxed enough to fall asleep.

There was a time that I used to dread my periods, because I could almost attribute them to triggering a crises. However, over the years, I have learned to stay hydrated, take Folic acid during that whole week and avoid other triggers of a crises.

As with everything else, one's menstrual cycle is another facet that we must balance as sickle cell warriors.

Near Death Experiences with Sickle Cell

I'm sure many sickle cell warriors can relate to having near death experiences. I've been deathly ill a quite a number of times, but out of those numerous admissions, only once can I quantify as being near death.

The first was in 1993. I had Malaria, Cholera and Pneumonia when I was 13 in Nigeria. I had passed out about 10 blocks from home when I was walking home from the bus stop. One of the women on the street recognized me and carried me all the way home. She didn't know exactly where I lived, but some other neighbors saw me and showed her my house. My parents rushed me to the hospital. I don't remember much from that time, but I was in the hospital for 3 weeks.

The second was in 2001. I had gotten acute chest syndrome, and it was so bad that I was placed on BIPAP. In addition my liver enzymes were so high, I was beyond jaundiced, and had to have my a hemapheresis done. This is like dialysis, but they drew out all my blood and infused me with 6 units of fresh blood. My sister said the blood coming out of my body was almost black, the doc said there was no oxygen and the cells had been completely broken down (I had very few viable red blood cells).

The third was just last year, a few days after I started taking Nicosan. It was the flu turned to pneumonia, turned to Acute chest, and I had to be placed on the Ventilator for 2 days as they forced oxygen to my lungs. When I was extubated, I was so grateful to be able to breath normally! I was in in the hospital for 10 days that time.

Most of the time, when I get really, really sick, I don't remember anything at all. I think the forgetfulness is my mind's response to how frightening the whole encounter must have been. I really fear getting into respiratory distress, pneumonia or acute chest syndrome again. It seems to be the pattern of my near death experiences.

What about you? Any near death experiences?

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.

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!

April Fools Joke..not cool

Hello darlings,

In the interest of full disclosure, I must state that I had pain this week. I actually had to call off of work on April 1st. The pains started as they normally did, twinges here and there, L1s, nothing major, and I ignored them, thinking it was a fluke and would just go away.

However it could not be denied and less than an hour later I was shivering under the blankets in L3 pain all over my body. I had to dig through several boxes to get to my pain medicine (it's been so long, I'd started misplacing them!). I took a Benadryl/Dilaudid mix, 2 Nicosan and some Motrin.

It was so bad...it wasn't the worst pain that I've ever had, but I haven't had pain in so long that I think I have totally forgotten how bad it could get and how to deal. I was shocked at first, and then rapidly unable to cope, crying and everything. So. Not. Pretty. It was so weird, almost surreal like it wasn't me in pain...after all, I was at 11 months pain free!

Grrrrr!

The good news is that once the pain meds kicked in (or maybe the Benadryl) I fell asleep and woke up hours later with localized pain in one leg only. That quickly dissipated throughout the course of the next day and by the 3rd I was right as rain, with only my track record tarnished. My body totally played an April Fools prank on me, breaking my 11 month pain free streak!

Looking on the bright side, it could have been alot worse. I could have been in the hospital in full blown crises mode getting pumped full of pints of blood and poked a bajillion times a day. Okay, that does put stuff in perspective. I've truly been blessed.

Hope everyone is enjoying this fine spring weather. And to those that have written in, I will be responding posthaste, I just have to wade through tons of correspondence at the moment.

Ciao everyone...hope you are all well.

Stop Delays in Treatment of Sickle Cell Patients

This article is from the medical journal ED Nursing printed July 1st, 2007. I'm putting it on here so that more medical professionals can see that it's not wrong to treat sickle cell patients properly. The most pertinent parts for me will be in bold. Hola at Dr. Tanabe for hitting the nail on the head and standing up for sickle cell patients. I would love to meet the good doctor in person and just say THANK YOU! Please spread the word.

Stop delays in treatment of sickle cell pain patients

Believe what the patient tells you

Imagine being in horrible pain and knowing exactly what medication you need to control it, coming to an ED . . . and waiting an hour and a half for relief. Researchers recently looked at 612 patient visits for sickle cell disease (SCD) having an acute pain episode, and they found that took an average of 90 minutes for administration of an initial analgesic.

Emergency clinicians often perceive patients to be drug seeking, says Paula Tanabe, PhD, RN, the study's lead author and research assistant professor in the department of emergency medicine at Northwestern University in Chicago. "Nurses must begin to believe the patient," says Tanabe. "Patients with sickle cell disease do not want to come to the ED. By the time they do, they have exhausted all other interventions under their control." (Anonymous RN, please take note)

Provide better care to patients with SCD by increasing their personal knowledge base of the pathophysiologic complications and course of the disease, advises Tanabe. "ED clinicians receive very little education about sickle cell anemia. Until recently, the average age of death was in the 40s," she says.

SCD is a serious chronic disease often associated with many serious physiologic complications including strokes, acute chest syndrome, pulmonary complications, and acute pain episodes, says Tanabe. Two common mistakes are making wrong assumptions about the severity of their pain and not being aggressive enough in managing it, says Kathleen A. Delaney, MD, vice chair of the Division of Emergency Medicine at the University of Texas — Southwestern Medical Center at Dallas. "Sometimes they don't look like they're in pain because they are chronically in pain," she says. "There is no particular test that tells us whether they are having a crisis or not. We need to accept what the patient is saying and treat the pain aggressively."

To improve care of SCD patients, do the following:

• Develop an individual care plan for patients:"All patients deserve excellent pain management," says Tanabe. For patients with frequent visits to your ED, create an individual care plan with them, ED clinicians, and the patients' primary care provider, advises Tanabe. Emergency nurses can be important members of teams to establish individual patient care plans that outline analgesic management specific to each patient, she adds.

• Assign a high triage score: The study showed that a low triage score was the strongest predictor of long waits to receiving an initial analgesic. Rapid and aggressive analgesic management has been associated with decreased need for hospitalization, says Tanabe. "At a minimum, it is important to assign the correct high-priority score and do whatever possible to facilitate placement in a treatment space," Tanabe says.

• Do a thorough assessment: Don't make the mistake of assuming this is "just another pain episode," warns Tanabe. Patients often present with chest pain that may indicate acute chest syndrome, which is associated with high mortality, and other-life threatening complications include sepsis and stroke, she says.

Often patients with SCD are labeled as "difficult" or "drug-seeking," says Tanabe. "Emergency nurses can help contribute to softening this attitude," she says. Ask patients these questions: What methods did you use to control your pain at home? When did the pain episode begin? Where is the pain? Is this typical of your pain episodes? Do you require transfusions? When was the last time you were transfused? Do you have a health care provider that you see on a routine basis? What analgesic agents are usually effective to decrease your pain in the ED? How many and what doses?

"Typically, we are very impressed when patients can remember their medications and doses," says Tanabe. "The same should be true for patients with SCD."

• Do frequent reassessment of pain after analgesic administration: This reassessment can help achieve rapid pain control and help decrease the need for hospitalization, says Tanabe. "Additional doses should be provided within five to 10 minutes," she says. (I wish this was the case!)

• Be concerned about infection: SCD patients are susceptible to multiple bacterial infections including salmonella and pneumococcal sepsis, warns Delaney. "They develop infarctions of their spleen, so they are essentially asplenetic," she says. "They should get pneumococcal vaccine, which is not usually done in the ED — but sometimes we act as their primary care doctors."


Reference

*Tanabe P, Myers R, Zosel A, et al. Emergency department management of acute pain episodes in sickle cell disease. Acad Emerg Med 2007; 14:419-425.

The Sickle Cell Drug Addicts

I'm a nurse in a NYC public hospital and we have a cohort of patients w/SC who I see in the ED at least everyday or every other day. The hospital has a SC clinic but when it closes the patients come to the ED. They don't have to wait and everyone knows them. So for the next 6-8hrs they are given high doses of Dilaudid/Benadryl (at least three rounds) and are released. Okay, the question - are they addicts? I mean I KNOW SC is a horrible disease and reading your blog only drives that home for me. But honestly as a nurse my compassion is waning. The patients wait at the desk 2-3hrs on the dot after the last dose saying they need the next. Seeing them on a daily recurring basis only decreases my compassion as well. I really would like to get your take.

No, they aren't addicts. Think of the worst pain you have ever had in your life. It could be a broken limb, labor, migraine or even the shock like twinge you get once a while when you turn your head the wrong way. Okay now multiply that pain by 1000. And imagine that it's unrelenting, constant and totally all consuming. Picture that pain not only in the affected limb but all over your body. Imagine the pain immersing every single one of your body cells, coating them like fire while a million men are drilling into your bones. You can actually feel every single cell in your body screaming in pain, you can feel with every breath the pain gets worse and worse and worse and worse.

That was just a short snapshot of what a pain crises feels like, in fact, that was just a mini-compilation in words. In actuality it's so much worse. You've been on all kinds of pain meds all your life, in fact one might say you've built a tolerance to them. See tolerance is not the same as addiction. Addiction occurs when you crave the medication but you don't have any pain at all, Tolerance occurs when you've been on pain meds for a while and your body is accustomed to the dose, so now, a dose that you consider 'high' is actually barely scraping a few shards off the pain.

At the most, the Benadryl zonks you out enough that you can ignore the pain, but it's still there like a beastly monster, waiting for an hour or so just to pounce and devour you in waves of agony all over again. Your tolerance is to the level that the Dilaudid dose just helps to take the edge off, the edge that would otherwise have you screaming and rolling on the floor in hysteric misery.

Unfortunately for you, your prescription ran out, or you don't have a high enough dose to cover the immense pain that you are feeling. The clinic is closed. You were just in the ER yesterday, but got discharged still in pain. You don't want to go back to the hospital, but you have to, because right now at this very moment, you feel like if you don't get some help, you are going to die. It's a fine line between wanting to live and wanting to die, and that's the determination that makes you go to the hospital.

The nurses and doctors remember you from the day before. The doctor tells you that you were just here yesterday and should see your primary care physician. The nurse tells you to stop messing around, she's busy and doesn't have time to deal with fakers or addicts. You try to carry on a brave front, but inside you are a roiling mass of despair. The pain doesn't even let you focus, it doesn't let you express what you really want to say. All you can do is grip your sides and pray to God for mercy.

You watch the clock, still hurting but too proud to ask for more meds. The dose the harried nurse gave you was small and didn't do much. You smile and say thank you, gritting your teeth and sweating profusely in the effort to remain civil even though this fiendish torment is owning you, claiming you, torturing you. The hands on the clock creep slowly onward until finally you realize it's almost time for another dose. Perhaps this time you will find relief from the anguishing waves of pain. Perhaps.

Alas, your wishes are in vain as this dose barely does anything more than the last did. You know you should ask for more pain meds, but the look the nurse gave you when she injected the so called 'large' dose was enough to keep you quiet. You don't want to risk rejection and apathy from the people that are supposed to show compassion to you. So you go inward, into your happy place and become zombie like, trying to float outside of your body so that the pain doesn't get you. The nurse thinks you are sleeping, and tells another, "she's just drug seeking". Those words reached you and caused your heart to break some more. Now it's not just about the physical pain, but the emotional abuse you've gotten from the hands of the 'helpful' has just made you realize how bleak your situation is. No one understands.

Finally after the last dose, the nurse and doctor concur that you are well enough to be discharged. Your pain is still there, the underlying problems aren't solved, in fact they weren't even addressed. You are about to be discharged because you got the requisite three doses of Benadryl/Dilaudid and the ER 'can't do more to help.' Because everyone knows that three doses is enough to fix you. It's enough to fix sickle cell pain and let you go home. Besides, they need the bed for sicker patients. You protest, faintly at first, then louder, "But I'm still in pain! I'm still hurting!" Your pleas fall on deaf ears and icy demeanors. You are practically shoved out the door, paperwork appearing instantly, your IV taken out and the CNA unceremoniously comes to the room and tells you she needs to clean the bed.

The pain is still intense, you can barely walk---in fact, you find yourself falling as your knees buckle down. Your hands reach forward and prevent you from landing on the floor. Your joints protest as you use them, the cold hitting you and making everything a thousand times worse. You drag yourself by sheer force of will outside, forcing yourself to just keep breathing, keep living, keep fighting. Go Vixen, go! Just take another step, just crawl one more inch.

Tomorrow is another day. Perhaps tomorrow you will find some relief from this all consuming, all encompassing agony. Perhaps tomorrow someone will throw the rule book away and treat each patient on an individual basis. Perhaps tomorrow the doctor at the clinic will give you a higher dose for your oral pain meds. Perhaps tomorrow you will come across someone that actually understands, or at the very least, has some fuckin' compassion.

But today, all you have is you. You and your pain.

What the Pain Feels Like

This is one of my absolute favorite PSA's about sickle cell. Elise is totally kick ass, a warrior of the highest grade and I adore her accent. Her she talks about the pain that we sickle cell warriors go through.



If you want to watch the whole series, click HERE or visit http://www.curesicklecelldisease.com/

Crises #2: What Happened

Dates: May 9-17.

After spending Thursday night fighting cold and flu symptoms, Friday morning had me dealing with pain...in a major way. None of the trifecta of painkillers, (Oxycodone, Vicodin and Dilaudid) could help me, even when I majorly dosed up on the trifecta. This means that the pain was so out of control that even after taking enough meds to down a horse, I was still up and wracked in pain.

Norio took me to Urgent care and I was taken straight to the back. They looked in my chart and gave me IV Dilaudid, which didn't help. It took forever (like 4 tries) to get an IV ...they even looked on my feet, but finally they got one in my thumb. I was dehydrated, zonked out and still in pain. They transferred me to the hospital and that's where the fun stuff begins.

I was in the Progressive Care Unit for some reason, because the docs felt that my breathing wasn't on par due to the high level of pain meds I was on. On Saturday evening, Norio got a call from the docs saying that they would have to intubate me to protect my airway. Talk about something out of an episode of HOUSE.

Next thing you know, I wake up Sunday morning on the ventilator, struggling trying not to pull the damn thing out of my mouth. It was awful, it felt like a giant cactus shoved into your chest all the way down to your stomach and the machine was forcing me to breathe. The docs came to me and told me that my choices was to either stay on the vent and get sufficient pain meds, or get off it and be in some pain. They didn't want to OD me. I was like, TAKE THAT SHIT OUT RIGHT NOW! A few hours later to my relief they did. Sometime during that stint someone had stuck a PICC line in my arm (thank goodness!), which was there for the rest of the admission.

I think I was in the ICU for a few more days for observation and then I got moved to a regular med surg unit. I didn't really remember much until Tuesday when my sister flew into town to take care of me and make sure I wasn't getting kilt. (I love my family!) She stayed the whole week and is just leaving tomorrow...I'm going to miss her. She was at my bedside almost 24/7 and we talked alot, when I wasn't sleeping (which wasn't often!)

There were some more issues with pain control through the rest of the admission but by Saturday I was ready to get the hell out of there. I was sick of the vital signs, constant supervision and inability to do anything by myself. And I was sick and tired of the nurses as nice as they were and the crappy ass food. It's good to be home!

Crises #2 of 2008: The Triggers

First of all, let's focus on the triggers:

1. The Trip to Hawaii: I was sick on this trip but not a major crises zone. More like "I'm warding off a major crises with rest and meds, please God don't let me get majorly sick!" I did get better towards the end of the trip though. It was a relaxing vacation, and I'm glad I went.
   
2. The Flight Back From Hawaii: Was exhausting as all get out. Then on top of that, we flew into to California and had to drive back up 10 hours to Oregon after a busy day spent running errands after flying in a red eye to the mainland. That part of the trip was not thought out well, but most of the time, you plan the whole trip...and just forget about the getting home part. It was rigourous.
   
3. Starting Work the Next Day: I should have taken a few days off to rest after coming back to town, but due to the fact that my insurance wouldn't kick in if I didn't work that day I had to work. New job, orientation and a full schedule.
   
4. Getting Strep Throat from Norio: Some kisses actually are to die for. I caught strep from him and spent the week fighting the flu-ish bug, sore throat, cold symptoms and downing Dayquil at work. Not fun. I knew I was going to get sick.

Back Again

Well, the last week has been rough to say the least. I'm going to explore the triggers of my last crises as I usually do in my next post, but this one was really, really awful. The last time I was sick, I thought it was my worst time ever...but this time, this puts everything in a whole new perspective.

I was in the ICU---On the ventilator!

OMG, it was absolutely crazy. What's even more bizarre is that when I was struggling for life, my mom in Nigeria had this eerie dark premonition and woke up from her sleep and started praying hardcore from me. My cell phone was ringing with my friend DC from the East Coast leaving me a message and saying that I was heavily on her mind and she just wanted to see how I was doing.

I was zonked out and unconscious most of last week and finally through bits and pieces from my family and the hospital workers, I was able to piece the whole thing together. All right, I'll give you the skinny in the next post. But I just want to take this moment to thank God for life and love and family. And make sure that you appreciate every moment that you have because you never know when you will be gone.

Admitting I'm Not a Super Woman

I was at work last night, another late 12 hour nocturnal shift. Everything was going okay until around 4am when I got hit by major pains. It's unethical to be popping pain pills when I have the lives of other people in my hands so I just gritted my teeth and tried to bear it.

However, the L3s were not letting up and I ended up flopped on one of the chairs at the nursing desk. One of the nurses asked me if I was okay. In that split second, I could have flashed her a smile and lied saying that I was, but I didn't.

"I'm in pain."

"Oh really? You have cramps?" she asked me. "No, I have sickle cell anemia and it's acting up," I said in a monotone. All the nurses looked at me then, instant pity on their faces. Yuck! I was mortified and wished in that moment I hadn't said anything. "Do you want to go home?" the charge nurse asked me.

It was 4am, I had 3.5 hours left in my shift. I shook my head no slowly. It would be a real stressful thing to leave my coworkers in a lurch with extra patients each. What can I say, I'm a glutton for punishment. She seemed relieved I wasn't going to head home. "You should go lie down. Take a blanket and one of the empty rooms and we'll wake you up a little after 5," the charge nurse practically ordered.

I wanted to resist and push through the pain, but at this point even I knew it would be an exercise in futility. Next to getting pain meds in my system at that point, rest was the next best thing so I protested weakly at first but gave in when everyone insisted.

I'm always wary about telling my coworkers and people in general that I have sickle cell. Mostly because I don't want to be treated like an invalid or wallow in pity. But this is one instance that I'm glad I spoke up and let my vulnerable side show. I can't be a Super Woman every time.

An hour later, I woke up from my power nap with L2s but was able to finish the rest of the shift much more comfortably. Kudos to my coworkers for being so cool and picking up the slack for that hour when I was down and out.

Here is to surviving a potential crises. I'm home, rested and feeling much better now. Super Woman lives to fight another day.

Going to the ER with Sickle Cell

For some reason, the medical profession, especially in the US has a limited view of sickle cell. First of all, they think that people with the trait can't have pain---THAT IS A MYTH! Just because they don't have the full out disease, doesn't mean that pain doesn't exist in the life of a carrier too. On the sickle cell forum, I heard about the guy on the East Coast that has had the trait for YEARS but kept getting told that he couldn't be in pain. 

What is up with that bullshit line, "You can't be in pain?" How do you know what my pain is? Are you in my body? Do you know anything about me that you think because a certain dosage works on you or others that it's okay for my pain as well? Pain is subjective bitches, so if I'm telling you I'm in pain...then hell yeah, I'm in pain. 

Okay, before I get hit with the firing squad let me remind you---I work in the medical profession. So I see on a constant basis how we in the 'med profession' have a nonchalant attitude towards pain. If it's not your pain, you can't relate to it. So just try to help the person and stop hoarding the pain meds like you are paying for it our of your own pocket.  

Yeah, it sucks the way hospitals and med. professionals treat us. I once was made to crawl out of the ED on my hands and knees, I was in so much pain and they just ignored me and watched me crawl. I don't want that to happen to anyone ever again, so let's arm ourselves with some knowledge. 

Here are some tips that a sickle cell warrior should know before going to the emergency room:

• You have to find a doctor...just one, that is with the program. Once your doc is on your side, he can write standing orders for you at the ER that you visit. Most people don't know about this, but it is possible for the doctor to leave standing orders with parameters on your file with the emergency room. That way the ER doc knows what he needs to do to get your pain under control.
  
• Try using a hematologist or oncologist instead of an internal med. doctor. They have more compassion, especially the oncologists. Oncologists have a better relationship to pain management because cancer pts deal with alot of pain and tend to have high tolerance to pain meds just like we do.
• Stick to the same ER.  I've noticed that when you go to different ED's you don't get a good history. They won't have you in their records and won't know your parameters. Also, it will look like you only get 1-2 crises a year instead of 4-6 if you play ED hopscotch. So find one that doesn't treat you too bad and go there often. That way they will have a thick file on you that they can refer to and realise from your labs that duh, you DO have sickle cell.
• When going to a new hospital, I always take my doctor's notes and medical folder with me, just in case they try to give me grief. Usually this contains a set of lab work so they know where my H&H usually hangs out at as well as what kind of pain meds I've been prescribed. In the medical field, you can never have too much information. 
• Always try to have someone go with you, like your mom, sis, friend or man, someone that they won't walk over that will raise hell to get your pain under control. Your family/friend can be your greatest asset during this, they are your advocate and are there to see to your comfort and make sure things are done correctly. When all else fails, ask for the manager (yes, hospitals/emergency rooms have managers too!) I once filed a complaint with the nursing supervisor against my doctor and nurse, and it went up the channels until the CEO of the hospital came to apologize on their behalf. Never think that you have to take whatever they dish out---remember, you are the customer!
• Empower yourself. Learn as much about this ailment as you can so that when you get in the ED, if you are met with an ignoramus, you will be able to educate them. Just because someone has a medical degree, doesn't mean they know much about SCD. You are the most experienced person in the room because you've dealt with it everyday of your life. That's a whole lot of knowledge. So don't be afraid to step up and speak up for yourself. 

Good luck my warriors! 

Back From Another Crises

First of all, I will update the ticker. Now it's only been a 5 days since my last admission, bummer---what a way to start the year. But I'm not going to gripe about it, such is the lot in my life. Everyone has their burden to bear.

Last year I had 3 major hospitalizations, actually, it was a better year than before. It's just that I still feel like I can do better. For the last 3 years, I've been getting a crises in January like clockwork, I almost expected it this time, even though my timeline wasn't right on the 3-4 month mark yet. At least this means I'm good until May...I hope I'll skip the March Madness crises.

This year I start with just one. I'm going to take better care of myself, rest, eat right, exercise and drink my Arginine like it's the elixir of life. I have to kick this sickle cell this year because I have so much planned, my wedding, my trip to Nigeria and then all the plans on the new house. I don't even want to be sick anymore, I feel like it's such a waste of my energy.

Yeah, waste of energy. It doesn't make sense but it is, being sick drains me and everytime I fall sick I feel like I have to start back up again from the ground up with work, life and routines. I feel like I get a good groove going, a regular life cycle and then with every crises everything shuffles all over again.

Enough melancholy. Thanks for your lovely emails and kind thoughts. We are all in this together.

Happy New Year everyone.

Crises #1 of 2008: Triggers

Okay, so I'm trying to think about everything that contributed to this last crises, so that I can do better with the 'taking care of myself' part and prevent another one from happening.

1. Working Overtime: Overtime pay rocks, but the OT on my body was a bad call. I thought that I was fine, actually didn't do any OT the week of Xmas & New Year, but perhaps working 64 hours the week before wasn't a good idea.
2. Travelling: Although I wasn't driving, I did take a 9 hour trip up to Oregon. We broke it halfway just for my benefit, but from now on trips longer than 4 hours should be flown.
3. The Cold: I had caught a really bad cold the week before I fell sick. It was a head cold, complete with the coughing, achy head and runny nose. I amped up on Vit C. and cold meds, but it just kept getting worse everyday. I even had it when I took the drive up to Oregon.
4. Cold Ass Oregon: I'm trying not to bitch about the weather here. It's hard but I'm trying. It's not as cold as Baltimore was and I lived there for over 3 years. It's just that I'm not used to it yet and coming with a cold wasn't a good mix.
5. Exhaustion: My body was tired and just gave out of me. The pains came as a way of telling me to stop and chill out. I already had a job lined up for a couple of days after I moved up here, I should have taken some days off after the hard work I put in the month before. So my body was telling me to chill.
6. Dehydration: I'm always dehydrated when I'm not working. You would think that I would drink more at home than at work, but just having a few days off from work throws my hydration schedule off. I tend to take water with me to work and drink a whole gallon over an 8 hour shift, but when I'm at home, I just drink only one liter. I should get a better habit of drinking regardless of whether I work or not.

That's all I can think of right now. That's a synopsis of what I think triggered this last crises.

Sickle Cell & Cold

Today I was asked a question by a friend, "Which do you like better, hot or cold?" My answer was a vehement HOT! Not just because it's so miserable being cold but mainly because when I'm cold for a period of time (like more than 20 minutes), I put myself at a higher risk of getting pain.

This is unfortunately why I don't do anything that drops my core body temperature. Stuff like dancing in the rain, kissing in the rain or even getting in the ocean will make my joints hurt like crazy shortly therafter. Sometimes, it doesn't even take 20 minutes, I can feel the cold start seeping in from a walk through the chilly snow to my house and I know I'm going to hurt!

So I invest in lots of thermals, thick socks, gloves, scarves, coats and layered outfits. I rarely go out in the winter with just a sweater and jacket, I have to have some leggings and tights on as well, and if I have any even leg warmers. For some reason my top half feels fine, it's the extremities that do me in.

Dress warmly peoples---it's hella cold out there.

Double Whammy

I'd been skating on thin ice for weeks, dealing with daily pain and my eyes were definitely juandiced. I knew I was about to fall sick, the question was when. 2 weeks ago, I was thrown into a crushing series of L3's uncontrolled by meds. This hit me right after work, when I was on the way home. I could attribute it to the change in weather, but all I know is that my ass was laid out in pain.

Norio took one look at my face and said, "You're going to the hospital." For once I didn't argue, just gingerly put my shoes on and a thick coat. It was a fast admission, and I was in lala-land approximately 45 minutes after I got into the hospital. My hematocrit was 7.5, which for me is low but not low enough to transfuse. The ED docs wanted to admit me anyway, so I went for it.

I was hooked up to a Fentanyl PCA, which left me dealing with hardcore constipation and drinking prune juice like water. The first few days were a blur of myriad images and hallucinations, the only constant was Norio's soothing presence. I remember one time I was zonked out fighting demons in my nightmares, and all I could hear was his voice talking to the nurse, and that was enough to calm down. By day 4, I was lucid, and day 6, I was ready to come home. I hate being in the hospital, I feel like my life is being wasted with every minute I'm a patient there.

My discharge was on Friday, and I spent the weekend recuperating, gearing up for work on Monday. On Sunday I had a burst of energy and decided to clean the apartment from top to bottom, the dead flowers were really starting to bother me. I even went ahead and made dinner, slipping into sexy lingerie before Norio came home.

Except by the time he got home an hour later, I was shivering under the blanket, heat blasting on 90 degrees. He was surprised to find me decked out in a sexy outfit, but unfortunately I couldn't use it, I was in that much pain. Grrrrr!

He took me to the hospital a few minutes later (yes, I did change my outfit), and then I went through my hellish ER experience. That's a story for another day. I was in the hospital for a whole 'nother week, and even I wanted to throw in the towel when 2 days after my blood transfusion I still wasn't feeling better. Add to that, my HR department let me know that if I was out of work for more than 30 days I would lose my job...thanks fuckers!

Added to that, there was some family drama going on---people really do have bad timing. The bright spots were that I once again felt the outpouring of love from my family and friends, even my former boss sent me a huge gift basket. I was more than ready to go home when the Dr. asked me, I didn't even wait for him to finish. The nurse pulled out my PICC line and it was like losing my best buddy, that PICC line helped me when all my veins crapped out.

All in all, I was home for the weekend and then had to drag myself into work on Monday.

Here We Go Again

Just when I started thinking I was going to be doing great for a while.
Just when I started getting into the groove of this exercising thing.
Just when I started taking Pro-Arginine and feeling great.
Just when I started getting used to my hours at work.

Just when my life starts getting normal again.

BAM!

I fall sick. With an H&H of 4.3/12.9, I was delirious, weak and in pain.
So now, 10 days later, I have to pick up the pieces, get my strength back and start all over again. It's enough to keep me down and out.

But still I rise.

Trepidation

I have this weird feeling in my leg. It first started in my thigh, like a tight muscle. I had Norio massaging it last night with some relief but I could still feel a knot there. Today the next symptom was tingling. It's on the same leg but the tingling is in my left foot and toes with a weird numbness. I'm worried about this. Worried because it sounds like a possible blood clot that may have migrated from the thigh to my foot.

Or it could be nothing at all. I hope it's nothing at all.

I didn't mention it to Norio, but I'm very worried. I have a doctors appointment on the 24th, so hopefully it will be staged or better by then. Sometimes it's hard knowing so many complications of sickle cell---then every single little thing sends your mind whirling in a thousand different directions. Only time will tell.

I hope it's nothing. Nothing at all.

Hola!

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.