Plans and Updates

In July I have 2 trips planned, one to visit my family in Indiana and another to see my friend in Canada. I'm really excited and can't wait, but you know I'm still filled with the trepidation that every sickle cell warrior goes through when the holiday time comes around---Am I Going to Fall Sick? My last trip flying to Hawaii was filled with pains and rigors, and of course a major crises when I got home. Although it's not in my usual routine to be sick in July---there is always the first time for everything.

Today was my first day of classes, I'm finally going back to school for my advanced degree. It's so weird having to learn APA style all over again for school, but I'm sure that I'll get used to it after a while. Why---oh why do they make us use APA?

About Nicosan, alls well on that front. No major changes so far from the last report. I told my mom about it so hopefully she will score a few bottles on her way over here to visit. So all in all this has been a pretty good week for me, just a couple of minor L2s daily and nothing requiring narcs this week. Yay! Go me!

Re: Sickle Cell Drug Addicts

My, my, my that was a hot topic. I didn't even know that many people read the blog. I would like to thank Anon RN and Anon Parent for stepping up to the plate and bringing this up. Personally I hate it when people assume that just because we are on narcs we must be addicted. My prejudices do color my opinion as many other sickle cell warriors will share with you. But that topic is hashed over now so I'll let it rest. Feel free to read the comments section of the other posts to see how we left things.

Let's move on to more FUN things, shall we?

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.

Nicosan Trials: Month One

Okay, I just took my last pill from my first bottle, so I guess I've officially been on Nicosan for 30 days now. I haven't really noticed much difference besides the fact that I don't have as many L2s as I used to, and when I do, usually just one dose of pain meds sends them away.

Nicosan (Hemoxin in US), previously Niprisan or Nix-0699, is a phytochemical (ethanol/water extract of Piper guineenses seeds, Pterocapus osum stem, Eugenia caryophyllum fruit, and Sorghum bicolor leaves) being tested for the treatment of Sickle-cell disease (SCD). Nicosan, was effective in reducing episodes of SCD crisis associated with severe pain over a six-month period. Nicosan did not appear to affect the risk of severe complications or the level of anaemia. No serious adverse effects were reported.

It's a combo of herbal compounds in a capsule, so I did notice that weird capsule smell in my urine for the first few weeks, and now, either I don't notice it as much or my body is used to it.

I did come across some more information on Wikipedia---however I would pay money to get a copy of the clinical trials...so if anyone has those please pass them on. Also I'm starting my second bottle tonight, so I should probably start figuring out how to get replacements if I'm going to be on it longterm.

Some investor website keeps using my blog as an example of why people should buy stock into Nicosan---just an announcement, I'M NOT ENDORSING IT. I'm just using it and documenting my results or lack thereof, as objectively as I did with Arginine.

Pregnancy & Contraceptives with Sickle Cell

Besides abstinence, what are the best contraceptive choices for a sickle cell warrior? For men of course that would be the condom, but for the ladies, with all the choices out there it gets a bit more complicated. You don't want to try anything that is too heavily based on hormones, because they have a risk of causing blood clots...and that is not something that someone with SCD should be messing with. So that gives a wary eye to most oral contraceptives.

I've used the Nuvaring and Patch for a while, but they stressed me out hardcore. Those PMS-ey symptoms on a regular basis are not my cup of tea. A low dose hormonal would be recommended but be sure that you assess for side effects, as everyone reacts differently to the meds. If you are planning on not having kids for a while the Intrauterine Device aka the IUD is also recommended, mainly because it has no hormones at all.

This is one of those things is based on your choice, but it's essential to talk with your docs about your concerns before you leap into one. Remember, the people at Planned Parenthood rarely come across questions related to sickle cell, so they might not be your most informed source. When all else fails, fall back on condoms, they suck but they work about 99% of the time when used correctly.

Please don't think that because you have sickle cell you don't need to be on contraceptives, that is just foolhardy. There is no way that I would wish what I have on anyone, and that includes my offspring, so I'd rather not have kids then to pass this ish on. It's better to make good decisions and choose when you get pregnant and with whom, that way you can research the HgB gene of your potential baby daddy.

Pregnancy is hard, you are high risk, but it's doable. If you want a child, just make sure that your baby daddy is prescreened for the HgbS gene because you don't want to pass sickle cell on. Amp up on your folic acid. Most people with SS report that when they are pregnant they don't have any crises and very little pain, however that is not the same for everyone. If you do have pain, you have to make sure that whatever meds you take don't cross the placental barrier or your baby would be addicted to narcs (not a cool thing btw). A good doctor will help you through the transition, and make sure that you are in a genetic counseling program as well as a high risk pregnancy group.

Hmmm, what else? If you are on Hydroxyurea, DON'T GET PREGNANT. That's a warning that is to be shouted from the rooftops. Hydrea does cross the placental barrier and your child could be affected even in the early developmental phases. Effected as in all kinds of documented as well as undocumented problems including mental and physical deficits. I know you what your little offspring to be perfect, so make sure that you double up on birth control or abstain from sex altogether if you are on Hydrea. If you do want to get pregnant, you have to get off Hydrea for several months BEFORE you try to sperminate. It has to be out of your system BEFORE you get pregnant. I cannot stress this enough.

All in all the big question is that can people with sickle cell have children? The answer, a solid loud resounding YES. You can have children, you can go through labor, delivery and childbirth, you can produce a beautiful bundle of joy. But you have to be more educated, more prepared and have more support than any run of the mill Nancy. I know a woman with sickle cell that has 6 children, and none of them have the disease. That's the kind of success story you want so be smart and line your ducks in a row before you take the plunge.

Good luck.

Swimming with Sickle Cell

I got a question from a reader in Egypt that loves to swim but has a painful episode after each swimming session.

For sickle cell warriors, my advice is not to swim in cold water. The main thing about swimming is that it drops your core body temperature, increasing the work load of your circulatory system to keep your internal temperature in a good range. In addition, you are probably decreasing your oxygen saturation with the exertion. If you go scuba diving or into the deep sea, the atmospheric pressure underwater drops and this decreases the ability of your hemoglobin to hang on to oxygen---all in all not a good recipe for a sickle cell survivor. In fact it's a direct trip to pain city, not passing go.

There are alot of people that just love the water, my guy is one of them. He's most comfortable when he's wet and just loves anything related to water. My suggestion is to try a heated pool, jacuzzi or swimming when it's warmer. Besides that I recommend the usual, hydration, taking your pain meds and avoiding stress. Personally I don't swim anymore, it's just too painful. If I must I wade in the water, but only for a short period of time and then I'm back on the beach warming up.

Milan told me she got invited to the beach and had to make excuses why she couldn't go. Personally I love to frolic on the beach, watching people, playing games, having a great time and enjoying the sun. So don't let sickle cell limit your life to that extent, go to the beach, just know your limitations regarding the water.

Dealing With Sickle Cell When You Don't Have Insurance

Okay, so we all know what a load of crap the medical system in the USA is. It's even way more difficult to deal with it when you have a chronic illness like sickle cell. This is because you have to always make sure that you have insurance, because if you fall into a period that you don't, 9 times out of 10, that's when you will have a crises. And with the crises comes the bills and the credit collectors. Thank God for caller ID.

When I first got to the US, I was covered with Blue Cross with my mom's job. However, once I hit 21, I got booted off the coverage and I had to look for insurance on my own. It was okay when I had a regular job that covered me, but falling sick alot in 2005 finally took a toll on my employment opportunities and I was without a job, without money, without insurance and falling sick every 2-3 months.

Needless to say, my credit is totally shot. But I'm not worried about it anymore. See when you are sick, and you go to the hospital, the hospital HAS to treat you. It's against the law for them not to give you treatment because you don't have insurance.

When you get admitted, make sure you let your doctor and nurse know that you want to speak to the social worker. The social worker is the key to your getting your financial situation straightened out. A good social worker will help you apply for the right programs that will get your bills paid without you lifting a finger. There are alot of charities out there that cover hospitals, and funds that you won't even know about. As long as you don't have a job and no insurance, you are in like Flynn.

If the social worker is a dumbass, be sure to mention the magic phrase, "Apply for Medicare". Everyone is eligible for Medicare, not just the old folk. You paid into that system (and if not you, your 'rents did, so get yours!). Apply for Medicare and it can retroactively kick in to cover your medical costs. As long as you apply within 90 days of your hospitalization, they will pay for it. It's your responsibility to make sure your paperwork is on point, dot your i's and cross your t's. Answer every question to the best of your ability. Use a current address and phone number (if they can't contact you, they will deny your claim.) You will be asked to show supporting documentation of your brokeness, like a bank statement and submit a letter stating that someone else (boyfriend, family friend, cousin) is supporting you and letting you live with them free of charge or with minimal expenses.

Once you turn in all the paperwork, you will be contacted by the county social worker, who will review your file and pretty much assess if you are eligible. Be honest but not stupid. For example, don't tell her you smoke weed for pain control. If she asks if you contribute anything to the household, the correct answer is yes. Even if all you buy are groceries once in a while, bus passes or tampons, you have to state that you contribute to get a higher overhead.

If you ace that interview, then you will get your Medicare package which has your card and some letters that you have to make copies of and mail to all the people harassing you with bills. They will then retroactively file claims to get the money that you *owe* them from Medicare. The only hangup is that you are allowed a certain amount per hospitalization, and if you go over that Medicare won't pay extra. I think it was $12,000 for California and anything over that got tacked on to me.

So whatever you don't pay, you can get on a payment plan with the creditors. It's better if the plan doesn't add a ridiculous interest rate every month, or if it's less than $500 bucks, that way you have a chance of paying if off. But if it's more than you can handle, just ignore them and they will eventually add it to your credit. Once it's on your credit report, as long as you don't acknowledge it as a legitimate debt, it falls off in 7-8 years (depending on your state). You can contact Experian and add a note to your file that states that it was because of medical expenses.

I know it sucks to have screwy credit, but there is not way that I'm going to get a loan to pay a $50,000 hospital bill. When you do look at the itemized hospital bill, you will seen absolutely inflated prices for everything from IV flushes to lab work. Logistically it doesn't cost that much, but a hospital is like a business and they have to make money too. I just wish they had different rates for those that have insurance versus those that don't.

So make the system work for you. Be sure to renew/reapply for Medicare every year. It's good to have it as a backup in case you do fall out of favor. Another good supplemental insurance can be found at http://www.combined.com/. Get this, these guys will actually pay you when you are admitted. There is a certain amount you get per day per hospitalization. That way you don't have to worry about going back to work just because you are broke. In addition, they have other plans that take care of the extra overhead for being sick, like prescriptions, deductibles and your co-pays. It's alot of paperwork, but then by now you are a paperwork pro.

Just remember when you are feeling overwhelmed by the bills that there is a way out. Tell the creditors to stop harrassing you and contacting you. You don't have to go through this alone and if all else fails, just automatically develop a *fuck 'em* attitude and continue on with your life.

Good luck!