Sunday, February 28, 2010

Saturday, February 27, 2010

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.

Friday, February 26, 2010

Sickle Cell and Insomnia

Many sickle cell warriors have insomnia. I haven't been able to figure out the biophysical reasons around this, but I'm actively searching. The only hypothesis I have is that insomnia is somehow due to the pain meds we take. Perhaps our bodies become attuned to drowsiness only with opiates and as a result we can't fall asleep without sleep aids.

I'm truly nocturnal (as you can see my blog postings are usually between 1 and 4 am). I have been a night owl as far back as I can remember. Going to bed early for me is hitting the sack at 2am. I think better at night, and I honestly believe that there is truly nothing more soothing than having a nice, quiet house all to yourself:)

However, I know that those of you that work regular jobs find it difficult to be alert and functioning after staying up til 4am in the morning. I know that many toss and turn for hours, while others have to take Ambien, Benadryl or some other sleep aid.

The most effective thing that works to put me to sleep after all my other routines have failed is a dose of Melatonin. Melatonin is a natural sleep hormone, produced by the body when you are lying at rest in a darkened room. Melatonin helps to shorten the time it takes to fall asleep, promote sleepiness and lengthen the time you are asleep.

The first time I took it, I had 3mg, which was way too much for me!! It had me feeling sleepy even when I was awake at work..ugh! I gradually modified my dose, and now I take 1mg about 30 minutes before I want to sleep. I do not use this every night, just on those nights when I'm having trouble falling asleep, or have to force myself to sleep because I have an early meeting in the AM.

Melatonin can be gotten from your natural supplement store, local pharmacist or grocery store. Be careful with the dose you select: it comes in 1mg, 3mg and 5mg. The body naturally secretes between 0.1-0.5mg, so some experts have argued that the pharmaceutical dosing is too much. But you also have to take into account that not all of the Melatonin will be absorbed in your body (since stomach acids tend to neutralize a large % of ingested medications).

In addition, research has shown the the amount of Melatonin secreted by the body decreases gradually as we age. This is why older people sometimes sleep less than others.

If you are prone to depression, Melatonin is not recommended for you. Also, because we do have sickle cell, one should be careful since some research suggests that Melatonin leads to blood clots.

On the plus side, Melatonin helps to establish a normal sleep/wake cycle, sync your body's biorhythms and circadian rhythm, is an antioxidant, and helps with drug withdrawal.

So if you have tried everything else to help your insomnia and nothing has worked, or if you do not want to tack on another hardcore drug into your already medicated regimen, I would suggest giving Melatonin a try.

If anyone can explain why Sickle Cell warriors are insomniacs, please leave a comment/send me a message. I would love to understand this. Thank you.

Thursday, February 25, 2010

Sickle Cell News

Medical researchers are developing a new surveillance system to determine the number of patients diagnosed with a family of inherited blood disorders known as hemoglobinopathies, including sickle cell disease, thalassemias, and hemoglobin E disease.

The National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health is funding the four-year pilot project, which will involve the Centers for Disease Control and Prevention and six state health departments, to create ways to learn more about the extent of hemoglobinopathies in the United States.

Data collected from the $27 million Registry and Surveillance System in Hemoglobinopathies (RuSH) project will help researchers determine the most effective plans for developing future hemoglobinopathy registries. Research findings based on data from disease registries may provide new ideas for drug therapies and can spur the development of tests that can determine severity of diseases over the lifespan.

Read the rest of the press release HERE

Tuesday, February 23, 2010

Traveling Abroad with Sickle Cell

Question: I am a sickle cell warrior and I'm afraid to travel to certain countries like Ukraine or China. Help!

Okay, so I know that one of the main tenets of this blog is that sickle cell should not limit you. And I say that if you wish to travel to other countries, go for it. Just be sickle smart, plan and prepare for every eventuality.

Do everything in your power not to fall sick. Pace yourself, listen to your body, hydrate, be transfused before you leave your home base, avoid stress, get know, the usual sickle cell regimen. That way, should you get sick, hopefully it won't be a full blown crises but just a mini one that you can deal with in your hotel room.

 If you can afford it, get traveler's medical insurance. This will cover most emergency room visits and treatments post ER visits while you are abroad. Some countries require this as a contingency plan before you get a long-term visa (greater than 90 day stay). Just make sure before you buy in, that you read and understand the Pre-Existing Conditions clause. If you have Kaiser insurance, you are extremely lucky. They will cover the full bill of your medical care abroad, and might even fly you back to the US for treatment if you need to be hospitalized.

When traveling abroad, make sure you have some of your medical history with you. You should have a printout of your current labs, your last discharge summary, and a list of medications that you are on. I usually visit my doctor a few weeks before my trip for a routine checkup and ask for a letter that I can give physicians in other countries that details my most common sickle cell complications, medications and treatment plans. I also ask for a prescription for my pain meds that will cover me for the full period when I am abroad. I never want to run out of meds in a foreign country, because it will be hard to get the same meds and doses abroad. Keep all this stuff in a safe place, probably close to where you have your passport.

If you are visiting non-English speaking countries, make sure you understand the language. If not, I suggest to stay away from the rural areas and visit the big cities where there are alot of tourists and more English speakers. Chances are there, you will be able to find an English speaking hospital/physician that can attend to your needs. Some cities have hospitals that are exclusively English speaking, a good internet search or phone call to the embassy can help you in your research.

Know something about blood transfusions. If the country you are going to has a low population of Africans/African Americans, it might be hard to come up with the right antibody/antigen match for your blood. Sure, they can match your phenotype real easy, but each cultural group has antigen markers that are not present in others and put you at risk for having a transfusion reaction. This was one of the reasons that the embassy of Australia did not want to give me a work visa, because they were concerned that there wouldn't be a blood match if I did need a transfusion. This is why I highly recommend a pre-transfusion before you travel abroad.

Not all countries have a significant sickle cell population i.e. Scandinavian countries and some parts of Asia. You might find a couple of sickle cell warriors, but not a huge community. As a result, most hospitals and doctors will not have current exposure with treatment of a sickle cell warrior in full blown crises. (This can actually be a good thing). However, all physicians learn about sickle cell in school, it is a hematologic condition and is studied in all medical schools. The only thing is that not having current exposure puts the doctor at a disadvantage as to what to test for, and what to prescribe for your treatment. But not having exposure also means that the doctors are not prone to misjudge, discriminate, or stigmatize against sickle cell patients. The medical professionals are more compassionate, are more prone to listen to you and try to help you.

Ask for a hematologist or oncologist. They generally have more experience with blood disorders and may have come across sickle cell. If all else fails, I guess you have to settle for an internal med doctor, but don't worry...they aren't like the internal med docs here...they actually do not act like they know everything, will research your condition with peers and professional journals, and will read the documents you give them from your physician.

Know that medications are different when abroad. They have different drug manufacturers, different drug concentrations and different meds, just the same way they have a different currencies. So the docs might be giving you  a different drug that hopefully will have the same effect. If you have any allergies, research the alternate names and tell the docs so they know prior to your treatment. For example, Tylenol is called Paracetamol...(sorry, this is the only one I know offhand).

Beyond this, just follow the basic traveler rules. Only drink bottled water, get your immunization shots, stay safe and have fun!

Sunday, February 21, 2010

Sex with Sickle Cell

How can one have sex without fear of falling ill in between or after?

That's a great question. I don't think that you can really get rid of the fear until you have had successful sessions in the boudoir without a crises. It does take a while to find the best routine and regimen that works for you, and it all depends on your partner, and how you articulate your needs and limitations.

The truth of the matter is that you have to listen to what your body is telling you. Chances are, positions that have your knees and joints in odd angles are okay for a few minutes, but anything more than 4-5, and you will be hurting seriously after. You have to find knee friendly positions as your staples, like missionary for the ladies with sickle cell, and doggy style for the guys. You can switch it up and do other positions, but you shouldn't be trying to work through the Kama Sutra or folding your body up like a pretzel in the name of good sex.

Make sure you are well hydrated before and after engaging in any serious bedplay. Heck, if you take a break between acts, drink some water then too! You are losing water through perspiration and bodily fluids, so replenishing them as soon as possible is essential to preventing a crises.

You know those twinges you get in certain parts of your body when you are engaging in strenuous activity? Do not ignore those twinges during sex. That is your body's early warning signal telling you that whatever position you are in, or whatever you are doing is way too much for you! Switch it up, take a break, put your legs down and stretch out your limbs.

Ease into it. Sex is exercise, and when you are going to the gym, you always do stretches before you hit the treadmill. Stretching improves the blood flow to your muscles, prevents spasms, cramps, and heats up the body gradually thereby preventing lactic acid buildup in the muscles. Since during the plateau phase of sex (right before orgasm), your muscles automatically tense up, it's good to have them warm and supple when this occurs.

Oh, and chances are, with sickle cell, you aren't going to be a Sex Olympian. There will be no 2-3 hour bedroom sessions for fact, you will be lucky if you make it to the 45 minute mark (this includes foreplay), without getting tired and fatigued. Remember, we are naturally anemic, which means that we are biologically at a slight disadvantage to those with normal hemoglobin count.

To overcome this limitation, I would suggest expanding your repertoire to include other things besides coitus. Think feathers, tantra, erotic massages, erotica, light touches, oral, BJs etc. If you get him (or her) riled up enough before penetration, chances are, your significant other won't even notice that it's been less than an hour for the whole event.

The hardest part for me was finding a partner that was patient, intelligent and loving enough to have sex with me without inducing a crises. It takes a special person to be able to understand the implications of SCD, and have multiple successful encounters in the bedroom without triggering a crises. Once you are able to do that, then you will have the comfort level to explore the outer realms of your desire, and still contain that SCD beast within.

Good luck!

Friday, February 19, 2010

Sickle Cell Advocacy & Activism

This week, I got a chance to speak with Phyllis Thomas, the founder of the SCD Soldiers Network which is an Advocacy Group for Adults with Sickle Cell Disease (AGASCA). The SCD Soldier Network enables the sickle cell community to be advocates for each other. The beautiful part of this organization is that it's driven completely by volunteers like you and I.

To reduce the ignorance and stigma that people with sickle cell face, each of us have to be the voice, and the face of sickle cell to our peers, colleagues, friends, family and community. The SC Soldier Network will give you the tools to educate those around you.

Support Soldiers disseminate information in their communities, make referrals to the organization of patients that need AGASCA services, and attend AGASCA events in their area.

Front Line soldiers are charged with teaching, advocating, intervening and lobbying for change in the lives of the SCD patients they come across.
"They do the hands-on advocacy work. They also support those in need of care when in the hospital. They visit patients, provide meals for the families who are headed by a client who is sick. There are a variety of services that they will provide."
I just registered to be a Front Line Soldier for my community and I need you to register as well. Ghandi said, "Be the change you want to see in the world." We want the public to treat us differently, we want more information about sickle cell available to the masses, we want advocacy and support when we are sick. So instead of waiting for someone to do this for us...let us join together and do it ourselves. Join AGASCA today.

Thursday, February 18, 2010

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Wednesday, February 17, 2010

I'm Nigerian!!!

For some reason, there seems to be a lingering question of my origins. Why? What does it matter? I have no idea what the big mystery is. Anyway, to clarify matters, reduce endless speculation, and clear the air; allow me to re-introduce myself.

My name is Tosin Ola. I was born in Nigeria, raised in Nigeria, bred and buttered (as they say), in Nigeria. I came to the United States when I was 4, returned home to Naija when I was 10, and came back to the US when I turned 18. I'm assimilated into the US archetype, but am 100% Nigerian.

I actually have 13 names listed on my birth certificate; and yes, Jennifer is one of them. 

Vixen is a nickname, coined from my first blog, which did not talk about sickle cell at all but delved more into the mysteries of dating and relationships. Since I used the same blogger profile when I set up this blog, the pseudonym carried over into this blog.

Sickle Cell Warrior, or SCW, is actually the pseudonym for this blog. I refuse to accept the label of sickler, sufferer or any other name that incites pitying looks and shunned whispers. I do not think that sickle cell is something to be ashamed of, and people with diabetes are not called why should I be called a sickler? that that is all cleared up, let's get on to more important matters:)

Saturday, February 13, 2010


So I know that I haven't blogged in a couple of weeks, but readers on the FB page will know that I ran out of Nicosan and fell sick! I'm much better now, and things seem to be looking up on the Nicosan front.

I have also been job hunting. Actually I applied for and got 2 jobs and now I'm faced with the dilemma of having to turn one down. I'm actually tempted to keep them both, but I know that my sickle cell won't let me work that much! I usually work 3 or 4 days in a row, and need a few days in between to feel rejuvenated enough to work again. But I like both jobs, and see the potential for growth in both organizations. Decisions, decisions, decisions!

I guess I shouldn't be venting about this, after all, some people would be grateful to have one job offer, let alone 2. But even though I know rationally which job to accept...the other job beckons me as well.

Job 1: is where I presently work but the job will be as a permanent employee instead of a contracted position. I know the routine, adore my coworkers, and it's a cush (easy) job. I've done this type of nursing for a while now, and I'm used to it. The schedule is good and the pay and benefits are astoundingly good. Free parking. The hours are 12pm-11pm...which is perfect because I get to sleep in, and still get to fall asleep in my own bed at night.

Job 2: is more intense. It will be a new field,~Trauma, so I will be coming in not only as a new employee, but completely new to that type of nursing. It will be challenging, difficult and will have a huge learning curve. However, it aligns perfectly with my future goals, and sets me up in a good position for my graduate program (the hospital is directly affiliated with my future grad school). The pay is a couple of dollars less per hour, and the benefits totally suck. Parking is atrocious there. It is a night shift position (7pm to 730am), so I will be doing the graveyard thing again.

I really like Job 1, because I'm used to it, it's safe, and it pays more now. Job 2 however, aligns with my future goals, and once I'm done with grad school, I will be making more than both these jobs combined.

It's times like this that I wish i was a normal person, who could hold down 2 full time jobs and not have a crises. So I have to pick one...this week. The question is,...which one?