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!!!

[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!

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!!!!

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.