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!!