Marijuana, the Grinch and Pain Management

On to a more controversial subject......... Yes I'm going there.

Lately there has been a lot of activity online about the benefits of "Mary Jane" for sickle cell. The University of Minnesota is presently conducting research on the benefits of Marijuana on Sickle Cell pain management.  This got me thinking........... is Mary Jane a good alternative to typical Opioid pain management regimes?

If I were to absolutely believe the literature out there in cyberspace then I would say a resounding YES!!  However one needs to step back from what I like to call 'the noise' and really break it down.  

Everyone has a personal preference and the reality is right now there isn't a right answer to the question.  First things first, the use of Mary Jane is strictly for pain management, it is not a cure for Sickle Cell and it will not elevate the frequency of crisis's.  

My relationship with opioids is a love-hate one.  I love them when I need them because they take away the pain, and I absolutely hate them when I'm coming off them.  Confused? Well lets just say that the side effects of opioids - in my case - Morphine are as follows;

• itchiness - to the point where I'm literally scratching my skin off
• constipation
• nausea
• lethargy
• Mood swings - more towards the dark, depressed side of the spectrum

Sometimes the recovery from the opioids can take longer than the sickle cell crisis itself, so an alternative means of managing my pain without these hang-ups would be fabulous!!  Now thats not to say that Mary Jane doesn't have its negative side effects like paranoia, increase risk of lung cancer.

Over the years Marijuana has had a bad rap, demonised by America as a drug for low-lifes and degenerates.  Within the same country medical Marijuana has been found to have properties which help cancer patients with pain and nausea.  So when you think about it, why shouldn't it be considered as a pain alternative?  

One of the champions for the use of Marijuana for pain management was Sister Somayah Kambui - she passed away from suspected lung cancer.  She had several run-ins with the law about her pain management regime.  If you want to read more about her struggle view the video down below.

The phrase ‘self medication’ comes to mind.  At some point in our lives we have self-medicated, from taking flu medicine for the snuffles, to antibiotics for feeling run down, to Malaria pills for a fever.  The issue with self-medication is that nothing is measured, nothing is proven…… it can all go very wrong…. like Gregory House MD wrong.  Now thats not to say that the doctors who prescribe opioids don't get it wrong - I can't tell you the number of times I've had to send back medication because I felt it was way too much.

The other issues are quality and delivery, because of its ‘illegal’ nature, its not controlled so its sold with impurities in addition to being more commonly smoked.  This will have an adverse effect on your lungs, which can’t possibly be healthy.  Sicklers are already at a disposition for chest infections.  The effects of sweet MaryJane are short acting, so it will involve you smoking a copious amounts daily to even out the pain. 

Now I’m not one to judge and frankly every Sickler has their way of managing their pain, but I will say this……. there is a huge jump from using Mary Jane as a recreational habit to a pain management drug.  Until there is a form of Marijuana that is controlled and can be delivered in a form that is safe for Sicklers, I wouldn't advise its use for pain management.  

Would I recommend it as a recreational habit?  No Comment :) The risks are the same, and everyone is entitled to take risks to their health so long as they are willing to deal with the consequences.  So whats your take the subject? Feel free to leave your comments.

And on that note, till next time - Toodles!!!  

SEX............. and the Grinch

SEX!!!  *giggle*

Now that is an exercise that everyone (especially in this part of the world) likes to pretend they don't do........ well those that aren't married...... and they be humping like rabbits.  Hypocrisy aside its an interesting exercise and tied in with the grinch it has lead to some interesting and compromising situations - I'm sure you're all gagging for my funny stories, maybe later....... over some dinner and a glass of wine.

First off, I'm about to vent right now, there are certain entities I would like to sue.  The first would be Walt Disney.  Fine as a kid sex is not the first thing on your mind when you watch the little mermaid or the princess and the frog, but hell……. that concept of happily ever after did not prepare me for the reality of sex and love - well that is another interesting topic for another post.

The next one is Mills and Boons.  At no point do ANY of those books prepare you for the messiness that is sex.  All those bodily fluids, the heat....the sweat..... the noises.... is not the pretty picture those books make it out to be.  

Rant over back to the real topic at hand.  Religion and morals aside, sex is one of the rights of passage growing up as a young buck.  From the moment you enter your teens, you talk about it, fantasize about it and for most of us lie about our experiences with it.  There isn't a rule book that tells you what to do or how to go about it........ most of us just muddle through trying to achive that sacred orgasim.

For Sicklers all of this applies in addition to what I call the Russian Roulette syndrome, let me explain.  While sex is a powerful & enjoyable experience (just ask Henry VIII, dude started a new religion just so he could bone Anne Boleyn) its also quite strenuous and can cause a crisis.  The act in itself, if done too rigorously - I know, I know porn has a lot to answer for - can cause an attack during (this totally sucks balls - pardon the pun) and after (at least there is the pleasure before the pain).  So Sicklers have to 'prepare' for the act.....we'll get to this later but know that as with everything the Grinch - spontaneous little devil - can still make an appearance.

I can hear the young ones complaining already....... why does one need to prepare for sex?  This totally kills the spontaneity of the situation, why can't I be like normal people that just do it???!!  This is just another thing the Grinch uses to complicate my life.  I hear you, but you know what? Sex is a wonderful thing........suck it up and deal.  You not taking care of yourself does not only affect you.  Case in point was when I carelessly had sex with an individual who didn't know I was a sickler after a wild nite out clubbing.  EPIC FAIL!!  The night ended with an ambulance ride to A&E and the poor man running for the hills thinking that he had 'broken' me.

The other point is this...... if you are pursuing a serious relationship with someone and you have a crisis every time you have sex best believe, despite how good the other person is, it will put a strain on your relationship.  

So how do you - the Sickler - prepare for 'la petite mort'?  I did a quick scan on the internet and I was pleasantly surprised that in other parts of the world people do talk about it....... in depth.  The Sickle Cell Warriors site had an interesting article that stressed the following points;

1. Hydrate excessively.  Sex is a physical activity, and like all physical activities, you will perspire and lose bodily fluids. So drink water before, during, and after without shame.  Sure you might have to break to pee, but at least you won't be in pain after.
2. Premedicate. For some, taking painkillers before sex helped to stem the tide of a mini-crisis afterwards.
3. Talk to your partner.  Tell your partner that you might have some limitations around sex. Communication is essential and will help your partner be a vanguard of your safety. Tell him/her that you are excited about the boudoir session, but need to protect your health. 
4. Listen to your body.  You must remember that “Pain is your Body telling you that You Need to Take a Break.” So when you are having sex, if you feel pain, stop. Change positions frequently so that you don't lose blood flow in any areas. And remember, you don't have to be going hardcore every single minute. Sometimes, it’s the pauses between sex that elevate your intimacy.
5. Set the environment.  Your bedroom should not be too hot (you will sweat more and dehydrate faster), or too cold (you will vaso-constrict and sickle faster).  Choose a decent temperature, that is comfortable for nudity.  Men—remember that women have to be romanced in the mind first. Women—remember that men have to be seduced visually first.
6. Frolic with Foreplay.  For people with sickle cell, foreplay is your friend. Foreplay gets your partner hot and bothered, and yet, it doesn’t have you over exerting yourself.  Don't rush the foreplay—drag it out, take it slow, and leave your partner simmering and almost about to explode.
7. Be Safe.  Safety is key. Have fun, play hard, play safe, use condoms/birth control.  Make sure if you do plan to procreate, that your partner has been screened for SC trait. Better safe than sorry.

I hope this post has helped but I wonder if any of you have any tricks that you have found to help?  Don't hesitate to leave your comments and for those that are more sensitive my email is foxycleo@gmail.com.

Toodles!!!!

My relationship with pain

Pain is an interesting sensation. Pain can bring out a number of reactions; Shock, Fear, Frustration, Pleasure, Anger......    Whatever the reaction, they are instant and intense.

Over the centuries, pain has been used as a training tool. From a slave master whipping their slaves, to a toddler who sticks their finger in the hot water tap of a water dispenser, to a parent who smacks their child, to a person's first heart break.  The age old logic is 'if it hurts, learn from it and don't do it again'. 

So what's my relationship with pain? It's like any relationship you have with a wild animal. You can tame it, or in my case it tames you, but drop your guard or not play by the rules, it will cause all manner of damage. 

Pain is a wonderful training tool. I've been trained to get things done and avoid procrastination (sometimes though it is hard to do.....go figure, I'm human!). I've learned to be determined, work through the pain...... Take no prisoners. I'm fiercely logical, so my problem solving skills are off the chain.  All these acquired skills...... Sometimes it's hard to decipher  whether they have been taught to me or they are part of my personality. 

All these skills helped me get where I am today. I have a PhD........ In computer systems engineering (I won't lie, that shit was difficult). The thing about a doctorate is this, it has fuck all to do with how 'intelligent' you are. It's all about whether you have the balls to start and better yet, whether you can achieve the goals you set. It's not for everyone and to be frank if I was given a chance to do it again I not sure I would do it again.

Growing up I went to a catholic summer school (call it a symptom of very easy-going parents, cos we ain't catholic).  When the proprietor found out I was a sickler, she took me aside and counselled me on how the pain could be put as an offering to Jesus, because he did the same when he died for our sins.  I think she thought it would be an avenue to help me deal.  Here's the thing about drawing on metaphors, if you don't make them exact you run the risk of making yourself sound like you're selling pointless insurance especially when you haven't a clue who you're trying to sell it to.  When you think about pain, you think about the light at the end of the tunnel, when you get to the other side, when it stops hurting...... that does not happen with Sickle Cell.  Sure the pain stops after a crisis, but there is no telling when the Grinch will come back.  No one tells you how to deal with that uncertainty, no one tells you sometimes no matter how much you play by the rules "shit just happens".  But hey "That's life".........DEAL.

I know I'm not painting a pretty picture, and frankly my intent is not to, but these are the thoughts that can go through a Sicklers head from time to time.  I would have loads of sessions with my psychologist friend (I miss her loads!!) where I would just off load and she would help me see that even if I couldn't see the end of the tunnel there were those things that offset the bad - Family, Friends, Love, my achievements despite my shortcomings, and the hope that as I moved through the different phases in my life - MY Definition would have less and less of the Grinch forefront.

For my learned friends I'm sure they are chomping at the bit to say these thoughts and feelings are that dreaded word........... Depression.  Now most sicklers I know like to think that they only have to deal with the sickle cell - I'm one of those people but there are side effects to the disease that do affect our quality of life.  A year ago my GP in the UK made me fill a questionnaire and she told me that I was moderately depressed.   I totally ignored her but given these last couple of months I'm now inclined to take her a little more seriously.  I'm currently trying doing my research and I will have a post talking about Sickle Cell and Depression but in the meantime know that you (my fellow sicklers) are not going crazy and you are not alone...........

Toodles!!

Hello my name is [insert name], would you like to be my friend?

This post is going to serve a guide (I'm struggling really hard to not write idiot's guide) to being a friend to a sickler.

Why do you need a guide?  You don't really but sometimes its nice to have some clarity on how to handle certain situations and reduce the number of douchebag moments.

I don't look like a Sickler. What does that mean? People assume that because one is a Sickler one must look sick......all the damned time!!  In the book that traumatized me - for a refresher read this, it indicated that Sicklers had the following physical characteristics

1.  Yellow skin and yellow eyes

2.  Buck teeth

3.  Predominate foreheads

4.  Inflamed joints. The list was endless. 

I like many others don't have these physical characteristics, so friends & family tend to forget.

Its a double edge sword.  While Sicklers don't want to be reminded of what they are, they need for their friends & family to remember.  Why?  Because in a bid to be 'normal' some Sicklers take risks to be in-with-the-crowd.  Everyone goes through this........ its part of growing up.  The only difference is for Sicklers or anyone with a pre-existing condition the repercussions tend to be predictable and more severe.  In my previous posts I've talked about the short term effects of sickle cell pain.  There are long term implications each time a Sickler has a crisis, one of which is Bone Sclerosis.

Bone Sclerosis otherwise known as the bruising of the bone.  Research has shown that there is a positive correlation between bone sclerosis and crisis episodes. In essence, just because you don't see anything on the outside, believe that there is some damage going on on the inside.  Side effects of bone sclerosis can range from the 'bowing' of the vertebrae and the slow corrosion of the head of the Femur. When you are a young spritely young buck you don't think of these things. When you get older...... TRUST the fear of growing shorter or getting your hips replaced is no joke!

Back to friends & family.  In my experience one of two situations can occur;

1. Friends/family tend to wrap Sicklers in cotton wool. While this comes from a good place it does get fucking annoying!
2. Friends/family forget and push Sicklers (unwittingly) into compromising situations.

I am the first to admit that in the latter situation the Sickler should take on the responsibility of just saying no, but it does get wary when one has to say NO all the time. And this leads perfectly into where being a young, stupid whippersnapper comes into play:

So what is a Sicklers Kryptonite? The concept of being 'normal' - to have cold showers, drink only when thirsty, get cheap travel insurance, run on a treadmill for more than 20 mins, survive on less than 6 hours sleep, drink their fellow drinking buddies under the table, step outside in the cold without a sweater/coat, go 6 months without having to see a hematologist, ophthalmologist or an orthopedic doctor.....  The worse thing you could do to a Sickler is to make them feel like they are not normal...... but the reality is they aren't.

Over the years I have perfected the art of my 'play by ear' system when it comes to social commitments, much to the annoyance of friends and family.  The reality is no two days are the same, one day I could wake up full of energy, and in a split second a crisis could start.  So I cancel on my friends last minute and am hesitant to commit, this usually leads to frustrating conversations where I come off as a mean-spirited stubborn cow.  Those conversations irritate the fuck out of me.  The easiest thing for me to do would be for me to state the reason why I can't come out is because of the Grinch.......... but that would mean that I'm not normal.  So as a family/friend, if I say, I can't come out....... accept and respect it.

So what do you do when you happen to be with a Sickler during a Crisis?

Its funny..... I don't like having friends and family around me when I'm in 'full flow'.  Why?  Apart from it not being a fun time, I find myself comforting and re-assuring my friends/family.  It is exhausting.  I have been know to 'disappear' - what do I mean? There was a incident where I was staying over at a friend's house in Stratford.  The Grinch decided to make a house call and rather than alert my friends, I snuck out of the house, and drove.....in pain to Lewisham hospital. That is roughly a 10 mile drive.  Needless to say, my friend and her now husband were very upset with me.

So what do you do?  Just be supportive.  We've (Sicklers) have a lifetime's experience with this.  So don't panic, be strong, and LISTEN.  Tosin Coker states this eloquently, so have a gander.................

Toodles!!

Give me my damned meds!

One of the many side effects of sickle cell is opioid tolerance. This basically means that over time and use, the body builds up a tolerance to opiates used for pain control.

Gone are my younger days when a dose of less than 5 milligrams of Morphine got me over the initial crisis attack.  Now I have the pleasure of 10mg of Morphine every 4 hours (in the UK A&E, 3 doses and you're admitted.......locked in against your will).

In Nigeria, the drug combination strategy is preferred.  This usually involves Morphine and........wait for it..... 100mg worth of Diclofenac Sodium Suppositories!!  It’s a surreal experience when you actually look forward to a nurse shoving her finger up you arsehole.

I've never understood drug addicts. Taking opiates for a casual high seems like such a waste. I mean from the lethargy, to the hallucinations, the constant itching, and the constipation, why on earth would you sign up for that?  

Anyways I digress.  Opioid tolerance is the main reason why I ABSOLUTELY HATE hospitals.  There are other reasons but we'll get to them later.........

Pain is a sensation that the human body puts out because there is something wrong, that usually comes with a visual i.e. you break your leg - you feel the pain and you see a mangled leg.  The clusterfuckery of Sickle Cell is that there are no visuals.  The other issue with the pain is that it doesn't freaking stay in one place!  It would start in your left leg and then an hour later its moved up to your back.

As a casual bystander, take that visual - or lack thereof - switch and visualise yourself as the doctor administering narcotics.   Now add to the scenario the fact that you have already administered the max dosage and your patient is still screaming stating that the pain has moved to another body part.  Shady innit?

This is the scenario I am faced with EVERY time I have to go to a hospital without sickle cell protocols, and overly suspicious doctors. 

Which leads me to another reason why I hate hospitals.......... Shear bloody ignorance.

While I understand that the medical professionals have to deal with actual addicts looking for their next fix, it is - pardon the pun - a pain.

The phrase "But you look really healthy" is one of the most infuriating statements one can hear while they are doubled up in pain begging for pain relief.

Because of these perceptions I made some stupid decisions as a young buck. First, I'd wait at least 6 hours before I would call an ambulance to take me to hospital. Second, I would allow a doctor to ration my meds on the argument that they don't want me to become an addict. Both actions made me miserable because I'd be out of commission for more than a week, with another week to get 'back to normal'. 

This was my mode of operation until a sickle cell specialist nurse broke it down to me. Simple fact - the longer a sickler is in pain, the longer the recovery time.  Remember those muscles tensed up because of the pain? The longer those muscles are tense, the longer it will take for you to recover post-crisis. So while a doctor is pontificating on whether a sickler in pain is a drug addict looking for their next fix, their recovery time is being extended. 

At that point I became empowered. I started to ask questions about my treatment.  So for those of you out there still trying to figure out you own protocol, here is mine

1.    Identify what kind of crisis you're dealing with;

o   The Creeper: these ones you can manage at the start, but when they start to crescendo with pain meds......... go to the hospital

o   The Woosh: these ones catch you off-guard in the MOST awkward of situations.... don't worry we shall talk about that later.  They come fast and hard (yes that does sound dodgy) and they can literally take your breath away. Immediately you identify a Woosh, do not stop at Go, take a pill or try to manage that mutherfucker  - make a beeline to the hospital.

2.   Pain Meds: Demand them IMMEDIATELY.  You are allowed to bargain with your doctor regarding dosage.  This is however dependent on your relationship with your doctor.  I would recommend that you see your Consultant Haematologist at least once every 6 months even when you aren't ill.  Where there are records of your self-management there is less suspicion of you being a junkie.

3.   Fluids: get ready Wizz like a Mofo.  During a crisis your vessels are literally clogged up with ill-fitting blood cells.  The fluids help flush out the clog and keeps the blood moving. Failing that you run the real risk of having a stroke.  Fluid delivery can happen one of two ways;

1.   By Mouth: this is my preferred option, however dependent on the pain it can be a tug-of-war with the nurses on the efficiency of this method

2.   By Drip: the doctor's preference.  Its more efficient and they can infuse antibiotics, and other medication without having to stab the patient further. Reason why I hate it? You need to get stuck in the vein with a needle. 

Hypodermic needles are colour coded by size:

·      Brown – Big Man dem type veins

·      Green – Normal size veins

·      Pink – Little girlie type veins

·      Blue – Baby type veins 

Inexperienced doctors will turn you into a pincushion.  I warn doctors coming near me to only use the blue needles and because after 33 years of sickle cell experience I have the veins of a junkie.  So know your needle size and let the doctors know!!!

4.    Oxygen: Get that mask on and be prepared to Breathe In, Breathe Out.  Why?  Your body at the time of crisis is starved of oxygen.  As I stated before, pain is a sign that there is something wrong – so more oxygen, less pain.  Ironically, the lack of oxygen can also trigger a crisis so it’s always good to do some breathing exercises when feeling low.

So the next time you have to go to the hospital (I hope it’ll be not in the too near future, but don't be fooled – it will happen) be equip and take control.   Be demanding, ask questions and let the doctors know that while you are a patient, you are also an expert in your field – YOU.

Toodles!

What's it like being a Sickler?

The first time someone asked me that question I shot back a typical Foxy reply "What's it like being normal?"

I still get irritated when people make the mistake of asking that question. I mean, this has been my existence from the day one.  So how exactly do you want me to quantify it for you?  What do you want me to compare it to?

What does sickle cell pain feel like?

It’s a question that most people ask and it’s not an easy question to answer.  Pain is a sensation that everyone experiences to varying degrees but its not something that one can define.  Here is the thing; unless you have sickle cell you will NEVER truly understand what the pain feels like.

Why do I say this?  There is a clear distinction between 'regular' pain and sickle pain.  Regular pain is a fucking breeze compared to sickle pain, let me give you an example......... Black women addicted to the creamy crack (hair relaxer) I'm sure you can relate.

At 18, my pain threshold had gotten so high that whenever I relaxed my hair I couldn't tell when my scalp was burning. Needless to say, the last time I relaxed my hair I was left with scabs that covered over 60% of my scalp.  That was the start of my natural hair journey........ yes I shall blog about this too.

I realise that this might not be enough of a description for some skeptics out there so I did some research to see if there were any Sicklers who could do a better job, see video below.

So what happens when you have a crisis?

There are 4 types of crisis
1. Aplastic crisis
2. Haemolytic crisis
3. Splenic sequestration crisis
4. Vaso-occlusive crisis
I won't go into the definitions but I have the great fortune of only experiencing vaso-occlusive crisis.  A vaso-occlusive crisis is caused when the sickle-shaped red blood cells obstruct capillaries and restrict blood flow to organs. 

So my answer is simple........ unadulterated pain.

These 'sessions' can vary - from the ickle ones you can manage on your own, to the mutherfuckers that land you in hospital.  I still can't decide which one I prefer.....   

The ickle ones tend to last from days to weeks.  You can still function, but the pain is in the background.  This can be frustrating, as you don't know whether its going to get better or worse.  It also feels like it takes twice as much effort to get everyday stuff done. 

The mutherfuckers tend to be shorter (if there is no underlying infection), but the aftermath can be a bitch to deal with.  Let me explain....... 

The body's reaction to pain is to tense up the muscles around the area of pain.  The longer your muscles are tensed, the more those muscles work.  During a crisis you're too busy with the sickle pain to notice.  When its done, your body can feel like you've been hit by a bus....... been backed up on and hit all over again for good measure. 

The side effects of the pain medication are also something to consider.  They can make you

1. Drowsy - this side effect I love because it forces you to take the time out.  You have no choice.  The body in its drugged state shuts down to heal.
2. Constipated - same way the drugs slow you down, its slows down your digestive system.  The longer you're on those meds, the longer it takes for your digestive system to bounce back.  In some cases I've had to explore the laxative route to unblock the 'blockage'.  Picture that scene in Trainspotting where post heroin high, Renton (Ewan McGregor) uses a laxative suppository to sort out his constipation........ No more words need to be said on that score.

The final thing I will say is that there is absolutely no dignity in pain.  There is no posing......AT ALL (insert bush Naija accent here).  Take a woman who is in labour or a man who has been kicked in the nuts.  The last thing on your mind when you're in that much pain is how good you look, how badly behaved you are, other people's feelings, or how cute the doctor who's shooting you up with Morphine is.  You let go completely, this tumblr post sums it up beautifully.  

This has given me a 'I don't give a fuck' attitude on a lot of things, and I think I'm better for it.  I don't care what people think of me, or how I look to people.  I have been known to turn up at my friends house in my pjs, bedroom slippers equip with hot water bottle - who is named Babe.  It has contributed to the uniqueness that is me :) .

Toodles!!

In my search for videos, I came across lil Zechariah's video.  Maybe because its too close to home I couldn't bring myself to embed it on this post but I still think it is important to share his experience with you.