The Fat Skinny Sickler Complex

Let me first say a MASSIVE sorry for not posting anything in yonks.  It's been a case of life taking over my writing....... until this morning.

Please note: this post is from a female's perspective so any male ones out there please let me know if you go through the same

Was idly scrolling through my instagram posts..... as you do and I saw this post that made me stop dead in my tracks.

Now everyone is entitled to an opinion, we wouldn't be human beings if we didn't, so everyone with a chronic illness can related to the statements within that post.  Over the years I've pretty much hardened my heart against them but the statement "Maybe if you exercise and lose a little weight..." sliced open an old wound that obviously I had 'moved past' but not necessarily dealt with.

Let me put some context to this........... rewind to some years ago, (I daren't put the number cos......dang I'm getting old), to my first year at university and my first proper relationship let's call him Douchebag (while forgiven, I still like to think of him in douchebag terms).  He knew about my condition, even picked me up from the hospital a couple of times, but there was always that undercurrent of.......

"you really need to lose some weight" 

"this your pouch (in modern urban terms better know as FUPA...... yeah google it!!) needs to go, I like my woman to have a flat stomach"

I will not lie that relationship gave me serious body image issues.  What did I not try?  Exercise - with 'hilarious' results which I will explain later, to dieting - which made me miserable as fuck!  I went from a healthy UK size 12 to a UK size 6 and I wasn't happy.  I wasn't doing it for the right reasons and well to put it plainly even though Douchbag and I weren't dating anymore I wasn't doing it for me.

I only took to exercise properly after a consultation brought on by a particularly bad chest crisis episode (it was bad peoples....... I lost and still can't remember 3 days of my life type bad) where I was advised that my bone density was on the low side which was why my right hip bone was disintegrating.  He recommended a free-weight routine, calcium supplements and other life choices that should help turn it around as I was young.  So since then I've been no stranger to exercise and I like to maintain a certain weight/dress-size - but here is the problem, I will NEVER be Supermodel-esq for one primary reason - FEAR!!!!

Confused?  Let me explain.

1. One of the key rules for exercise or any sport is to always push through the 'wall'......... so what happens when it's not your mind that constitutes this wall but also your own body.  Don't get me wrong when I'm on that treadmill I push through as much as I can, then I calculate what other activities I need to do later on that day and the next which makes me stop
2. For those body builders out there this is for you.  Building muscle tone is a wonderful thing things fit better and well I live for the day that I can wear anything (boobs permitting) and feel great!!  Now the downside - when one is in a crisis, and I'm sure a few sicklers can relate, it's like the body part in question is in a vice that keeps on squeezing.  Over the years I have noticed that the more the muscle density the more intense the 'squeeze', so now I have an healthy fear of the ever elusive sixpack.  Infact it's safe to say that I DON'T WANT IT.

I've tried all sort exercise, from Pilates to Yoga and well the experience has pretty much been the same....... FEAR!  There was a time I would have a Yoga session with an instructor once a week, despite her insistence that I needed more than one session a week.  The sessions were going well, I mean my waist was getting smaller and I was more agile than I had been in years.  Till that day....... it was one of those 'push through the wall' type of days, so like a mumu I did.  The session ended and I felt good.  Climbed upstairs to have a shower and that is when the fucking Grinch decided to come and play.  While it was going on I imagined the following commentary;

"So you think you can get healthier without my agreement?"

"See your new muscles you have formed, I'm going to give them a firm squeeze"

"You want me to let go?  Nah lie!! I'm going to squeeze tighter"

"I want you to scream Biatch!!!!!"

"Beg Biatch, beg for me to stop"

"You are begging?  Nawh Biatch I'm on a roll, I'm not going to stop"

Long story short it took about 30mg of Morphine, 75mg of Diclofenac Sodium and I think about 100mg of Paracetamol injections (need to check that) to dissipate the pain (also note that that medication is enough to floor a fucking horse), with over a week of recovery all because I wanted to keep fit.  It took me over 6 months to attempt doing yoga again but it hasn't been the same, the fear keeps me from being consistent with it.

For Sicklers there is a lot to consider before one starts an exercise session

1. Are you well hydrated before you start exercising - because when you sweat drinking doesn't replenish fast enough
2. Did you have enough sleep the night before - it's amazing how lack of sleep actually has an adverse effect on sicklers
3. While exercising remember to Breathe!! Oxygen intake is important while you are stressing your muscles
4. What are your energy levels like before you undertake exercise - if you are on the low side, you might actually be sickling it just hasn't progressed to full blown crisis, so if you exercise you are putting yourself on a fast-track to the grinch using you as its plaything!!

Back to reason why I started this post....... people will always have their opinions and make requests.  It's allowed, like I say we are all humans but this is what gets my goat.  

To my recollection, most of the men in my life that have made that statement have never taken the time out to join me at the gym, or taken a yoga class with me to 'help' me attain the adonis body they sooo want me to achieve.  One guy actually said this to me "I know you are feeble so even though you should lose a little weight I will accept you as you are....."  *blink blink* Needless to say, that individual does not deserve a derogatory nickname because well he ain't even worth it.

It's about finding a balance, you want something you have to work on it, but for the right reasons.  I wish I could workout and have a Kim Kardashian butt with washboard abs but it's not going to happen.  I workout to keep myself healthy, building up my endurance, increasing my heart rate and increasing my oxygen intake.  

I'm happy with that and any Sickler should be happy with that too.  So the next time anyone mentions that phase "Maybe if you exercise and lose a little weight..." to you one of two things should happen;

1. Educate them on the reality of the situation and see if you both can go on that journey together
2. OR simply put - tell them to FUCK right off and go suck on an egg :D 

Toodles!!!

You are not alone

About a week ago I went on a short trip (Thank God) to IceBox country - my description of Winter, doesn’t matter where it is but if the temperature is lower than my age in ^oF we will have problems.  Couldn’t get out of the trip, believe me I tried but it had to be done.  Even though I lived in IceBox country for over 20 years, since moving to Warm Country - hee hee see what I did there - there are somethings I don’t miss.  Case in point, the constant pain - for those that read my blog - the Creeper kind.  So I was in a funk - frustrated, annoyed at my body and a little depressed.  So I posted this on Instagram as a pick-me-up.

To my surprise (sometimes you do forget that people do see what you put up on social media) I received this email.

..salutations Toyin (yes that is my Christian name),

I write from those terribly weird backstreets of the web where kinship is feigned behind anonymous computer screens via silly pseudonyms...<~ swear down I do not know what TF I just blabbered. Trying to sound smart when corresponding with smart types always gets me in a serious twist...sow

'erm I'll try again.. Hello Toyin, my name's MrAnonymous (not terribly important) but I am a closet sufferer who gets amazing support from the musings on your blogs, insta et.al <~ this is even sounding worse...mans coming off like a stalker n'dat. 

....<deep breath> Greetings Toyin, my name's MrAnonymous and I am big fan of your blog and hate to hear you are poorly. I have read your blog through really shitty times and it has always been really helpful. Sadly, my poor level of articulation and the void where grown-up vocabulary should reside in my brain have formed such a bond...nought but crap spews out of my mind's gob when I try to write. Thusly (not a word), I can not offer you a smart blog post as a trade for all the times you have unwittingly seen me through my dark moments..... <~ barf, I wear my trousers too low to come across so bladdy sof'

Arrrrrrrgh!...(last go)...Hello Toyin, I also tread these zany streets with a proper shite circulatory system. You have been pivotal in helping me come to terms with a lot..and truss mi, I am a grown 34 year old man. Sometimes read when you are poorly and just say a little prayer in me head...deciding to brave it today to actually let you know you've got a few knuckle-heads like us outchea actually wishing you better. <~sob stories irk me and I doubt you aren't fanatical of them either

(I give up) Toyin, desperately hope you do get better soon :)

This was a sharp reminder that other people do care.  Its easy to go to those dark places where you feel that no one else understands and that you are the only one in the universe who understands you.  Now in no means am I taking for granted friends and family that are there to see you through the dark times, but sometimes it takes someone you don't know to make you realise that you aren't the only one.  The world is not that cruel.

There are times when one can feel that God has a funky sense of humor and he that doesn't care, but its simply not the truth.  He NEVER gives you anything you can't handle, if he did then you would be dead.  So even when times are tough there is always someone who will be there to help you carry that load.  From a personal viewpoint I've found that no matter how much you push people away - and I won't lie I have been know to do that - much to the irritation of certain loved ones, yes you know I'm talking to you - someone will always be there to lift you out of that funk.......... if you let them.

So Thank You MrAnonymous for your email and giving me permission to post your email - obviously I have hidden his identity.

P.S. if you have been inspired to contribute to this blog regarding Sickle Cell - its effect on you, or your friends and family.  Please send your entries to foxycleo@gmail.com.  You never know who your words could inspire or help.


And on that note...... Toodles!!   

[Guest Post] Bearing witness to sickle cell

Hello all, its time for another guest post.  This entry was sent by Neuyogi, a fellow Queen’s College Yaba Old Girl.  She has her natural hair blog https://livingcoily.wordpress.com/ documenting her natural hair journey.  Have a gander and appreciate!!

I’m still looking for guest posts so if you are inspired please send your entries to foxycleo@gmail.com.  

Back to Neuyogi post…………..

As a Nigerian who grew up in Nigeria, it is hard to go through life without encountering sickle cell disease (SCD) in some form. At the very least in a Nigerian movie. Fact or lie? Definitely a fact for me :) I became aware vaguely in primary school. But then in high school it hit home 'cos I got to see DrFoxyCleo go through crises. This experience actually helped inspire me to go into medicine. Then when I was 12 my first cousin was born. The cutest boy, however when he turned 2 he would come visit with a sling or cast around his arm sometimes and I asked why does he keep breaking his arm? And then being told that it wasn't broken, just swollen and painful from SCD . Since he was 2 and trying to get into things the cast/sling contraption helped immobilise the arm. He is the first in the family that I am aware of with the disease even though we have a number of carriers in the family, myself included. 

I remember my mom telling me how she once loved a guy and they were practically engaged but broke it off cos they were both carriers. My mom was in her 20s when this happened, while my aunt (my cousin's mom) met my uncle in her mid 30s and they got married even though both carriers. Made me wonder if age impacts these kinds of decisions? Growing up in Naija, it wasn't uncommon to meet a guy or girl you liked and after exchanging names, ages...then being asked about genotype. The first time I did that here too a guy I liked, he looked at me like I was bonkers. And then I found out lots of people here in the States, even Nigerians born here did not know their genotype, some did not know their blood groups i was astonished!

I did go into medicine and I have borne witness to sickle cell disease along the way. I volunteered in the sickle cell organisation for adolescents for 4 years and heard the dreams and fears of these young teenagers. It was there that we learned to refer to people as "patient with SCD" rather than "sickler". For some reason that lesson really impacted me, because it makes the SCD secondary to the person's identity rather than their whole identity and I believe it. None of the staff who work with me or even my co-residents when I was in training were allowed to call people Sicklers around me. It might be overkill but I believe in it. 

Some of my closest friends here have the disease and have gone through losing gall bladders, acute chest, transfusions etc. However, overall quality of life and care was better especially for those that used Hydroxyurea, which includes my cousin. He is 21 now and he has had 1 blood transfusion and 1 hospitalisation which is amazing! I also love that there does not seem to be a lack of romantic options for my friends and cousin, unlike in Naija when i was growing up and there was a pariah effect with some people. 

I have gotten to see patients being referred to as drug seeking and it was only in 1 case out of so many that this was actually true. I follow the sickle cell warrior blog and have found myself asking why not get a bone marrow transplant, but like my friend patiently explained, it doesn't go well for everyone and if you don't have frequent crisis might not be worth the risk. I remember the Kenyan lady I met at a conference, with SCD who married a carrier and had 2 kids without SCD by in vitro. I was amazed because with science and technology comes choices...but many religious pundits were outraged at this act of playing God. 

Most recently, my aunt had a serious medical condition requiring hospitalisation for many months. I went to see her and her husband, children and I took shifts to spend the night with her in the hospital. They have a family friend that is a nurse, who has a 22 year old son with SCD and when she heard my cousin with SCD was going to be included in the night shift rotation she was flabbergasted, and told me to tell my uncle to not allow it. I firmly told her I wouldn't do that because my cousin should not be placed in a bubble. I told her I have close friends with SCD  in med school and residency with me who took gruelling overnight call, long hours and survived. I told her my cousin has lots of water and gatorade in his overnight bag, and then added that if he were to have a crisis...then no better place than the hospital right and chuckled ....yeah she was not amused, and got off the phone angrily. I had heard that her son was in college, but he had a crisis so she pulled him out and now he lives at home and goes to community college, he lives under her wing and does not have many friends his own age, he does not work or drive. Yeah, that is all loving for a mother but not what I want for my cousin. 

My close friend recently got married 2 weeks ago to a fellow Nigerian and she is in her 2nd year of fellowship for paediatric haematology oncology. I am thrilled for all the patients that get to have her as a doctor! As there is nothing like a healthcare provider who actually gets it and what you are going through! I am so glad that her parents supported her dreams while supporting her during health issues unlike the nurse I mentioned it seems. I say it seems, because I have not walked in her shoes nor do I know her daily struggles, but I had another encounter regarding her son and that didn't leave me with a good impression either. 

Altogether, I am thankful that with each decade, there is increased awareness and resources for people with SCD to make quality of life better. Another friend, recently gave birth to a beautiful girl. Back in the day, people said it was suicide to have SCD and try to have a baby. So yes, there are ways to go but times a-changing and I am glad to bear witness!

Bitch don't kill my vibe...........

Happy New Years folks!!!!

Sorry I've been able to post in a minute, what with the job change and the fact that my body for some reason is really resistant to change :D but we'll save that conversation for another time.

I wanted to start the New Year with something light-spirited and inspirational like New Years resolutions and plans for 2015 but I just read something that pissed me right off!!!!

Let me put some context to this upcoming rant...........

One of the reasons why I started this blog was because I felt that there is more than enough awareness on prevention and not enough awareness to those who live with the disease.

PREVENTION - it seems to be the buzzword in the media on sickle cell.  Now don't get me wrong there is nothing wrong in spreading the word but in Nigeria there is a nasty undercurrent to the prevention train.  Case in point, the article that inspired this rant: Before sickle cell sickens you in a cell... Now apart from the fact that this is a poorly written article one section in particular had me seeing red.

KNOW YOUR GENE BEFORE MARRIAGE
The days of ignorance as a re­sult of little medical research and public awareness are over. Soci­ety holds everyone responsible to guard against uninformed rela­tionships leading to marriage or child bearing outside wedlock.

While delivering a lecture on SCD – ‘Know Your Gene Before Marriage’ in Lagos recently, Dr. Martins Irhoeze told the work­shop that with medical research and public awareness embarked upon by the health ministry and religious bodies, there is no ex­cuse for anyone to fall victim to the disease or procreate children with sickle cell anaemia.

Just as the antidote to HIV-AIDS is abstinence, the fool-proof cure for SCD is complete preven­tion; and, like HIV-AIDS, it is easy to avoid the SCD because all a sensible adult needs to do is not to attempt to ‘acquire’ the virus that causes AIDS; acquiring is a deci­sion and that is where individual responsibility comes in.

“Similarly, a sensible adult go­ing into a relationship can easily avoid the problem of SCD by en­suring the genotype of his or her partner before marriage is con­templated.”

SKREECHHHHH Now I know this bitch DID NOT just compare prevention of SCD to the prevention of getting infected with HIV-AIDS!!!!!  Really?

Martins praised some religious organizations that created mari­tal counseling departments where intending couples are made to present their genotype test re­sults; some even go the extra mile to oversee the test themselves before the intending couples are counselled on other areas prepa­ratory for marriage.

I've always thought that Church's getting involved in the testing was a tad bit invasive but there are merits to this exercise.........

“The foundation of marriage today must be based on a thor­ough knowledge of what sickle cell disease is as well as the ne­cessity to know and ensure your genotype compatibility with your partner. The distinction between AA, AS and SS must be clearly un­derstood by both partners before marriage is embarked upon.”

Breathe Foxy Breathe because the clincher is coming..........

Martins painted graphic pic­tures of the consequences of ig­noring the genotype pre-marriage test. “People with incompatible genotype combination should not get married and those who are al­ready in relationships, must call off such relationships.”

I would love to hear verbatim what these graphic pictures are but in the meantime, who on earth made you judge and jury?!!! #*$*#*$*£

I'm all for awareness of how to prevent the disease, but I guess my irritation comes from the forceful tone of 'People with incompatible genotype combination should not get married and those who are al­ready in relationships, must call off such relationships'.  Awareness should not be about fear mongering, it should be about education, enlightenment and trusting that individuals come up with the answer that works for them.  Relationships are hard enough without bringing more fear into the mix!!

So I searched the internet to see if there were any sites that discussed SCD prevention in the right way and I found this Ask Dr. Craig!: Sickle Cell Disorder.  I took the liberty of taking some snippets of the article.  If you wish to see all the information please click on the hyperlink.

Get married and have no children
A good number of people, especially in the western world are choosing to get married and not have any children. Whereas in Africa children are seen as a completion to the marriage and are essential for keeping the family name alive, couples in Europe, Asia and the Americas are increasingly comfortable with limiting the scope of their marriage to the companionship that being together brings.

Get married and adopt
Some people choose to adopt children instead of having any of their own. Adoption is commoner in the west, and in some places like Hollywood has actually become a fad, with stars like Brangelina having adopted many children from all over the world. Adoption services are possible in Nigeria through the many orphanages here.

Get married and throw the dice
The odds of having a healthy child without any intervention are seemingly good. Three out of four. This means that there is a 75% chance that every given pregnancy could be either AA or AS. The other 25% is the likelihood of the baby being born SS. For some people these odds are good enough and they go ahead to marry and have children in the hope that the odds would be in their favour.

It is important to make clear again at this point that there will be couples who take this route and are fortunate enough to have all their children healthy (AA or AS), or have a mixture of AA, AS and SS. However, there are also couples who unfortunately go ahead to have all their children born with the disease.

Prenatal diagnosis
Some people don't like leaving things to chance and may feel that the 25% chance of things going wrong is too much of a gamble for them. In prenatal diagnosis, the couple throw the dice but are able to know before the baby is born what its genotype will be.

Doctors are able to take some samples from your baby while still in its mother’s womb (at this stage it is called a foetus) and determine what the genotype is. There are two ways of doing this; Amniocentesis and Chorionic Villus Sampling.

Pre implantation Genetic Diagnosis (PGD)
The aim of PGD is to ensure that couples have the best chance of having healthy children of their own. To do this the doctors will collect a number of the wife’s eggs (around 6-10) and fertilize them in the lab with her husband’s sperm (just like they do in IVF treatments). The fertilized eggs (embryos) are allowed to develop for three days and then one or two cells are removed from each embryo. The genetic material from the cells are tested and the genotype of each embryo is determined. Only those embryos that are AA are retained and the rest discarded.

Break up 
For some couples, the amount of time, energy, emotions and finances required to have healthy children is seen as too demanding. They opt to go their separate ways and try to find love elsewhere.

Now this is the responsible way to enlighten young couples on their options regarding Sickle cell disease on not the driffle that I see being peddled on the basis of religion or lack of tact.  No one has the right to tell people what to do in these situations.  Its their decision to make and not anyone else's.

Okay rant over...............

Happy New Years, 2015 is looking to be a cracker of a year!!!

Toodles!!

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!!!  

Traveling with the Grinch

So for my vacation I find myself in good old Blighty - the United Kingdom - for my baby sister's wedding (I don't care how old she is, she will always be my baby sister). I love Blighty, I grew up here, became who I am here, she's my second home. Blighty is where I learnt to take care of myself - on my own without parental assistance (best believe financially they were holding me down). Here is where I learnt that possibilities are endless so long as you're willing to take that first step. Blighty is where I learnt that no one is responsible for your welfare - you are.

I've never been one to take risks. The Grinch is a perfect excuse. 

"Lets go on holiday to Ibiza" 

"Man, I can't afford it" - the reality was always - hmmmm what if I have a crisis?

And sometimes the excuses creep into other scenarios.

"I can't be an investment banker, that job is too stressful"

"I can't take that course, what if I fall ill because of the stress?"

"I can't work out, I'm sure I will get sick"

"I can't go out, its too cold"

A Sickler's world can feel like its full of obstacles, obstacles that prevent you from being spontaneous or adventurous.  Family (bless 'em) in a bid to protect you can also reinforce those obstacles.  The reality is this, an obstacle is only an obstacle if you let it.

In my second year of university, I caught a bad case of 'itchy pants' syndrome and decided I didn't want to spend my third year in the UK.  So I applied to go on an exchange program to the University of Madison Wisconsin....... it was just a 'lets apply and see what happens kinda thing'.  I got it, in addition to a nice tidy scholarship - there was NO WAY the Grinch could mind fuck me to letting go of this opportunity. 

So off I went to Wisconsin, the 'America's Dairyland' - home to the cheeseheads, the Green Bay Packers, Garbage (The Band..... luv 'em) and the Wisconsin Badgers.  I was chasing my dreams, doing me, and then one night it almost came crashing down...... Hold on to that thought we'll get back to that shortly. 

For those Sicklers that are looking to go to university in the 'abroad' see this post as your idiots guide to survival health-wise. For those coming from a hot country, brace yourself because your body is going to have to adjust to your new environment. The change in temperature and humidity can be a clusterfuck. 

1.  Stay warm and more importantly stay dry. For the black females out there, you know that mantra about keeping your hair dry? Use that for the whole of your body. 

2.  The weather forecast is your best friend.  Nothing worse than stepping out of your house dressed for the summer and its autumn outside. 

3.  Drink loads of water, u might think you're not losing water because you aren't sweating. Big mistake, you are losing just as much water from central heating and the dry climate. 

4.  Get registered with a GP. If you can, dependent on your insurance options, get to see a hematologist. Based on your first meet, both of you can determine the frequency of your appointments. 

5.  Take your Penicillin. I do not deny that I am the most non-compliant patient so this tip is a tad hypocritical of me. In Nigeria the most common trigger of a crisis apart from stress is from infection - Malaria. Same could be said for the 'abroad' except it's chest infections. 

6.  Get your annual flu jab. The flu is no joke. Imagine having the flu, and then have a bad crisis aggravated by said flu AT THE SAME TIME? Not fun.........

Back to my anecdote.  Madison, Wisconsin is located in north-central USA, a mere 4 hrs drive from Chicago, Illinois.  Its a pretty quiet town with everything going for it........ except its fucking cold in the winter!!! So you guessed it, I fell ill...... constantly.  One particular night, the pain was excruciating and I couldn't breathe.  I had a flash back of annoyance  I remembered I didn't protest enough when the boyfriend at the time informed me he was going to Atlantic City with his Frat Brothers. (for those of you in the know, you can only imagine where and what he and his brothers were up to). Long story short, I woke up in ICU three days later. I have no conscious perception of what happened within those days.  What I do know is that I had had an acute chest crisis, which had required a blood transfusion. My parents freaked out!!  My mother - who I call my personal stalker - had located me in hospital (all the way in the abroad) and I spent the next two days trying to dissuade her from jumping on a plane to Madison Wisconsin.  

At that point, I could have left the U.S. with plausible reason and abandon my course. For me that was not an option. The thing is this - for whatever reason I was born with this condition but there was no way in hell it was going to run my life. Don't get me wrong I did run back home to my family........ It was a sorry sight. I had lost over a quarter of my weight, two dress sizes, and I had to use a crutch (I'll save that for another post) but when summer school started (despite my mum's pleas) I was back on a plane to Madison to make up my credits. 

So what's the moral here? 

God never gives you anything you can't handle. If he did, you would be dead. So don't use your 'hang-ups' as an excuse not to follow your dreams. That would be a total waste. Don't settle and kick arse. Apart from my mishap I had a fabulous time, an unforgettable experience and a sense of drive which keeps me going even now. It was from my time in the U.S.  I realized that getting a PhD was not impossible. 

So take risks (within reason) and live your life to the fullest!!!  Take precautions - you never know when it will save your life and just live. You have the right too. You're here aren't you?

So with that I'm gonna go enjoy the rest of my vacation. 

Toddles!!! 

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!!

To my friend...........Edmund Oteh

It was a just a normal day at work. It was raining outside and EVERYONE was complaining about how cold it was in the office.  I mean really – it’s cold outside so why do we need to have the central cooling system on full blast. Me? I was totally fine. Not only did I always have my trusty cardigan I also had my blanket.  Yes you read right, my blanket.  My wonderful mum, based on my previous complaints had taken it upon herself to purchase a 100% lamb wool blanket from the abroad to protect her daughter from the cold.

Anyone who knows me knows I have no shame.  In my corporate environment you will see me with my trust blanket wrapped around me like a ‘wrapper’ as and when needed.  J 

Then I got the phone call… it was from O.

O: Hello?

Me: How nawh? How’s u?

O ignores my question and goes… Are you sitting down?

Now O and I have a history to taking the piss out of each other on the regular, so I reply ‘Yes’ – I was lying.

O: He’s gone your son has gone….

Me: Huh?

At this point I was confused for two reasons:

1. I was waiting for the punch line, O never started a phone conversation in such a serious tone and
2. Given that I have never been preggers I was wondering where the hell I got a son from

O: Eddy he’s gone….

As the penny dropped I wish I hadn’t lied because my legs gave way and I fell into my chair. 

Me: What the hell happened?!

O: He had a very bad crisis… I have to go, will call u back

Trust O to drop a bombshell and leave!!

My emotions flew from confused, to sad, to that of white-hot anger!!  I’ll explain why.  Eddy was a colleague from my last job.  Eddy was a Sickler.  He was a quirky, intelligent, funny, larger than life character who was drifting through life.  Dude had potential that would take him far, but due to his condition (and social constraints) he did take the easy route with a lot of things.

We became fast friends and yes I did end up ‘Mummying’ the lad.  We could relate on things that so many non-Sicklers can only fathom.  I always knew when he was ill and pretending (EVERY Sickler has done this).   With him he usually did it for 2 reasons:

1. He didn’t want to go home (the commute did take it out of him cos he lived in the sticks)
2. He had forgotten his painkillers

I can’t count the number of times I would give him pain meds (being a female who caries a handbag helps a sister be prepared).  I also found myself acting like my mum, checking to see if he had had drunk enough water.

I would always ensure that he was empowered at work, and he was happier for it, taking on more responsibility and making changes in his life.  I remember having a heart to heart with him where I told him that his mum (bless her) would not be there to take care of him forever.

Eddy died on the 2^nd of April 2014 from complications from a badly managed crisis.  I won’t go into the details but I will say this… it was totally unnecessary!!  Today, the 19^th of June 2014 is Global Sickle Cell Awareness day.  If you have read my previous post you will know that I feel that there is too much emphasis on prevention and not enough attention on living with the disease.

Awareness should also extend to Sicklers.  Sicklers are experts in their condition – every Sickler is different and every crisis is different.  While Doctors are trained in the medical field, their jobs are easier when you the Sickler can put in your own input.  Know your pain levels, take care of yourself and NEVER be afraid to question their treatment.  The moment a doctor doesn’t listen to you, insist on getting another physician. 

It’s taken me almost 3 months to summon up the courage to write this post because;

1. I knew I would have to write about Eddy in the past tense,
2. Writing about this will also make me think about the reality of my own mortality and how I would hate to pass away due to Sickle cell

On that sobering note, I’m out.....

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!!

Finding that balance

This last month has been absolute hell.

From time to time the Grinch - sidebar, for the purposes of this post I am calling Sickle cell "the Grinch" because right now those are my feelings towards it - likes to remind me who's boss.

In 2009 I achieved my record number of hospital visits within 1 week.  My record is five, yes 5 times. Though one of those visits involved a hilarious episode (though I didn't think it at the time) where I had an allergic reaction to the seafood medley my long suffering twin sister cooked me.  I woke up at 4am with my face itching to high hell, and my lips felt like I had kissed the wrong end of a bubble bee.  I will never forget my irritation at the A&E receptionist when she unwittingly asked, in her cockney accent, "So why are you here today?".  My reaction was shove my face closer to the glass divider, point my finger towards my face and say "Can't you tell??".  Till this day I'm convinced that that allergic reaction due to the combination of the drugs and the seafood.

Besides that episode, that week was hell, no matter what I did, I kept on having to go back.....screaming for the drugs and being thankful that the episode was over so I could continue with my life.  Apart from the physical exhaustion, that shit does a number on your psychi.  At the time I didn't have the pressure of a full-time job.  I was writing my thesis, so my schedule was flexible and taking time-outs were okay.  So in between hospital sessions I would sit down and think about my existence.  Given the circumstances self pity usually creeps in.  Was this all I had to look forward to?  Why me?  What the fuck...... why is this happening again.....what did I do differently?

So now we come back to August 2013.  I've moved back to Nigeria, on my hustle, working full-time job at a bank (what was I thinking?!!!), single, and co-existing with the Grinch.  Work has been challenging (I may complain about it, but I love the challenge) with long working days (round about 12 hr days), and being single I do enjoy an active social life.  The Grinch don't like that.  See, the Grinch is a very jealous lover, so when you don't pay attention to him, he tends to kick back.  This time, the Grinch kicked back with a vengeance. 

For the last 4 weekends there has been an episode of varying proportions, the climax of which culminated in me maxing out on all my pain meds and learning that paracetamol....... yes paracetamol also comes in injection form.  One thing I will say, works a treat but its fucking painful when it goes in.  Even though its been more than a week since the last incident my arse feels like a pincushion - which does make sitting down on hard surfaces for long periods quite painful.  Obviously I'm not getting the balance right, but who does? 

In 2009, I had the time to contemplate and wallow in self pity. Today I realize that self pity gets you nowhere and there isn't the fucking time. There will always be someone more worse off than you and it's a dog eat dog out there. 

Here is my dilemma, and I'm sure many of you corporate buffs can relate, how do you find that balance?  No one is perfect and in the cut-throat corporate world your worth is only as good as your productivity. So if you are not upto scratch you get spit as fast as u can say "what the f....". So the objective is to keep pushing to meet your deliverables. Problem is, if you push too hard the Grinch will have something to say about it. And if you over-compensate by letting other aspects of your life slip you wake up at 60, alone with a load of cats to keep you company....... And I hate cats. 

So what's the answer? Damned if I know. All I know is I want to live my life to the fullest, and be financially independent. That's a hard thing to do for a normal person let alone dealing with the Grinch and no disability discrimination laws to protect you........ Remember this is Nigeria. 

So my question is this? How do you find that balance?  Can you have everything or does it always come down to a choice?  If you have the answers let me know...........

Toodles!