Wednesday, November 25, 2015

People with Rare Diseases need Understanding from those around them

Society needs a new platform of understanding of rare diseases. 
People with rare diseases often end up being the expert in their particular disease, but it is a very lonely road to travel. And most doctors do not like what they call “google patients”.  But with a rare disease, how can we not become detectives of our own illnesses, constantly hoping that there is a cure out there for us or even finding a cure ourselves through our research.  Just maybe a new look with ignorant eyes can see something that would be easily overlooked by the researchers.   The difference between people’s responses to me when I tell them about not having an immune system and telling them about the breast cancer is like chalk and cheese.  While you can’t see either illness from the outside, almost everyone without fail reacted with compassion and understanding to the breast cancer.  They do not even look at me when I spoke about my absent immune system.  I can see in their faces that they either don’t want to know or they think that I must have AIDS (oh, what skande) because AIDS has something to do with immune systems.   Rare illnesses also deserve to have the same platform of understanding.

To all those who have a rare disease – you have my immense respect.  It isn’t easy to paddle alone in a canoe.   When we hit the rapids all we can do is hold on.  Tomorrow the river may flow more gently, and we may have the energy to be grateful that we made it through to another day…one that holds the possibility of beautiful and magical moments.     

So what the fuck is wrong with her anyway?

Sister Lulama 
I have been asked via FaceBook inbox a number of times what exactly is wrong with me.   So here it is.  I am crazy but I like that part of me. Secondly, the only part of my body that seems to work well is my heart - it is filled with love and is just like a South African taxi... there is always room for one more person. Seriously, here are my diagnoses. 
Hairy Cell Leukaemia (a very rare leukaemia where only one person per 3.2 million people are diagnosed per year). I have had three rounds of chemotherapy for this and still have MRD (Minimal Residual Disease) This one is not really such a problem for me, although it did metastasise to breast cancer which ended up with me being tit-less. 
Leukocytoclastic Vasculitis (why I have a permanent port in my chest for infusions as all my peripheral veins have collapsed)
Hypogammaglobulinemia: This is a big problem. Because I have Primary Mannose-binding Lectin Deficiency and Secondary Humeral Immune Deficiency, it means that I do not have an immune system. There are no building blocks to even jump start the immune. And there is no cure. Having no immune system makes me vulnerable to any virus, bacteria or allergy and this is what puts me on my back and in hospital time and time again. Hypogammaglobulinemia is so unpredictable that I can’t make plans for later today, never mind for some time next week.  I live in a sterile bedroom and the only place I go other than my bedroom and bathroom, is to hospital. Even when I am there, I am vulnerable to any germ so I am put into isolation and barrier nursed. That means red bags for incineration, yellow bags for autoclaving and everyone who comes into the room is dressed up in theatre gowns, masks, boots, headgear and gloves. I have to have IVIG which is an immune system collected from donated blood and is transfused into me every second week. This gives me a kind of temporary immune system, but it is used up within two weeks so I have to go and get it again. It is a moerse big deal thing because it can cause all kinds of problems from anaphylaxis to host vs graft disease. Every time I go there is a possibility that I won’t come home. And if I do come home, I have to contend with the side effects of the IVIG. So I stare death in the face every second week – but without this infusion I will not live longer than an estimated six weeks. Blood donors keep me alive!
Another little problem that I have is that my kidneys are not functioning properly – but we are not near the stage of dialysis yet. These are just the names of the things that are wrong with me and I have not stated the symptoms of them – all I can say is that they are horrid and I would not wish these symptoms on my worst enemy, not even on Robert Mugabe and he truly is my worst enemy.  I can go from full steam ahead to dead stop in in less than half an hour. I don’t know why I do not get well and I do not die. It is what it is. Lots of people tell me that I am still alive because God still has stuff for me to do, but I do think He could be a little more kind to me. Every time my loved ones and my dearest FB friends think that this time I am a gonner, I seem to make it round the final bend; on wobbly legs and I totter down the main straight to be back amongst the living again…humorous, laughing with joy in the face of death once more. But each time it is a bit harder, and each time I am a bit weaker and each time a little of me has been left behind. And each time, I struggle harder to do the little things I used to be able to do before the last crisis.   Because I have all these rare diseases, does not mean that I am not still a human being. I am still me. I am just a prisoner of this body. I still worry about finances, how I can find the energy to clean the house or sometimes even to make a cup of tea and I worry about those I love, the state of our country, work, home life, my family and friends.  And I still want to be part of life – the part of life that only family and friends can give me by calling on the phone or visiting me.   My whole world has changed and normal no longer applies to me.  My new normal is feeling shitty.  And because I feel nauseous and ill so often, I get grumpy and unreasonable.  Could you love me through that?  

Tuesday, November 24, 2015


There is a little seaside village called Knysna.  The only real income to keep the village going during out of season is the huge amount being spent by visitors and tourists to the village during the holidays; and in particular, during the Christmas holidays which usually covers six weeks.
The clubs and bars hum with business and the chink-chink of the cash registers. Booze is selling very well.  Everyone is happy.   At one of the night venues is a beautiful looking DJ who is always smiling.  He becomes the target of every young girl’s dreams.  To be seen hanging on his arm, or standing behind the turn-tables with this good-looking young fellow creates a competition between the young women.  He in turn reciprocates – they want to make love, he makes love.  What young man would turn away from beautifully shaped, stunning looking young women?

Suddenly, the holiday feeling and the peace of the village is shattered when a young girl is murdered and a month later, another is murdered.

The police are under tremendous pressure to put the murderer behind bars.  They are being pressured by all the businesses.  “People will stop coming for the holidays” the business owners scream.    A third person is murdered, but that person hardly features in the gossip and the speculation going around the town.  The murder of the girls is on everyone’s lips.

Meanwhile, earlier in the year, March 2005, Inge Lotz is brutally murdered in her Stellenbosch apartment.  The police are also under pressure to find and convict her murderer. They settle on her boyfriend, Fred van der Vyver who was arrested.  However, the Western Cape High Court acquitted him.  He was innocent.   The murderer is still at large ten years later.

Why am I discussing the murder of Inge Lotz when the subject of this article is Knysna and a good-looking DJ.   Wait … the reason will become evident.  Let us set aside the Stellenbosch murder for the moment.

In October 2005, Jessica Wheeler was found murdered in the church yard in Knysna.  The police were unable to identify a clear suspect and no arrests were made.  In November 2005 (just before the Christmas influx of tourists and holiday makers), Victoria Stadler was found murdered at the Noetzie forest at Knysna.   Both girls socialized at the same nightclubs, one being “Stones”, where the popular young DJ worked his magic with his music.

The third person murdered and seldom spoken about was Peter McHelm.  He was found on the same day and in the same vicinity as Victoria Stadler.  Aubrey Kamoeti and Byron Moses were arrested, charged and found guilty of the murder of Peter McHelm.   This is a glaringly obvious anomaly – why were these two people found guilty of the murder of Peter McHelm but not of Victoria Stadler?  It does not take a rocket scientist to realize that there is a huge problem here that was not addressed by the police. It is not logical for two people to kill Peter McHelm, but for someone else to come along and kill Victoria at the same time and in the same place.  One has to be a complete idiot to believe that.

Director A Trollip of the SAPS, Christhenus van der Vijver, the public prosecutor, and Superintendent S Otto from the SAPS forensics  were all involved in both the Lotz murder (where the accused was acquitted) and the Knysna murders.   Why did Director A Trollip and his team have to come from the Western Cape to Knysna, weeks after the murder and suddenly they had a suspect?  Why was the forensics negative until Director Trollip arrived, when suddenly they became positive?  The DJ was framed!  That good-looking, fun-loving Heinrich van Rooyen was found guilty of the murder of both girls, and sentenced to 30 years imprisonment without option of parole.  Leave to appeal was denied.

He has now been in prison for ten years.   His parents have sent 1.2 million rand on his defence.  Once the money ran out … who cared if one young man was put away for life?

We care and we will do whatever it takes to right this miscarriage of justice.  The murderer of Jessica Wheeler is still at large.  It is common knowledge that the murder of Victoria Stadler was committed by the same people who murdered Peter McHelm.

There has been no justice for Jessica Wheeler and no justice for Heinrich van Rooyen.   Let us all work hard to right a wrong.  Let us fight injustice with every ounce of our strength and with every breath we take.   “For what you do to the least of my brothers, you do unto me”. 

Monday, November 23, 2015

The Monster in my Life

It is the coldest, darkest part of the night; the time just before the birds let you know that dawn is arriving – that I am rudely pulled away from my gentle slumber by the monster.  The monster’s name is Mr Naar Vomitus.
Oh, the longing to get away from Mr Vomitus. 

Pain one can handle; you can scream or you can hurt yourself where you have no pain to focus the pain on someplace else.  But with Mr Vomitus, there is nowhere to go.  You can’t get rid of him once he has you by the throat.  It is war – all-out war.  I throw all my ammo at him; it weakens him but he comes back time and again and suddenly – relief…reprieve from heaven.  Mr Vomitus is no more.  This is the way I start my day, every day.  This is how I win the first fight of the day.

Friday, November 13, 2015

Banned from FaceBook for telling the truth ...

WARNING: If you don't have a stomach for the reality of what is happening in our country, do not watch the video. If you have watched and you think you have the courage to stop being an armchair warrior, and to actually put some action behind your words, let me know. I am looking for people with courage, those who are unafraid and who feel affronted by what is happening in our land and who are prepared to stand up and say ENOUGH IS ENOUGH. We no longer need political forums - what we need is a social movement where all our issues are going to be addressed, by people like you and me. We can no longer leave it to the politicians - they have proved their unworthiness and have rendered our country a place we can no longer be proud of. The government is not accountable to the people. They should be because we put them there. However, they are not so now it is the people who must start fighting for peace and prosperity for us all. No longer can we allow our politicians to divide and rule. I don't have enough time to have back and forth debates. I want to do something right now to create the change we need, but I need others who feel the same way.
This was the message that accompanied by video of children being burned in a township. The reason for re-posting is because Mandla has received absolutely no response from his letters to the Human Rights Commission or to his enquiries that the SAPS do something about the inhumanity of this kind of mob violence.   The video had been taken down prior to me being banned.
I am locked out and banned from using FaceBook for the next 24 hours.  If I inadvertently had you banned for a similar period, please accept my apologies.   I never intended to shut anyone out.  My intention was to get people to see that even with evidence and despite numerous requests for something to be done about this tragic state of affairs in our country, nothing has been done.
We all have the right to a responsible government and the response of the government to the burning of children and adults is anything but responsible.
I will continue to write what I like, when I like and what I want to write.  No amount of banning will stop me from doing this.  I feel that being banned for showing the truth while child pornography and hate speech is allowed free access on social media, then we live in a very sick country.  Truth sure makes people afraid for why else would they have taken down my post.
Illegitimi non carborundum !!!!

Mom, it's me...

It was my second day home and I was lying on my left side, my one arm under the pillow where my head was, the other just holding a book.  My eyes were closed.  I felt a presence in the room.  “Fuck, this hallucinating is getting to be very bad”, I thought.  I had been losing some of my sight and getting tunnel vision and my hearing has been going for a ball of shit. 
I opened my one eye and saw my daughter.  “Holy Mother of God, I really must get help or tell Patrick about this”, I thought.  She just stood there looking at me.  I pulled my arm out from under the pillow and half raised myself.  Speaking very softly, I said; “Denny?”   I could not say it out loud.  I did not want anyone to think I had completely lost my marbles so I asked quietly.  If this was a vision, I was not broadcasting it.
“Mom, it’s me.  I am here…for seven whole days!”

The tears ran down my cheeks as I sobbed, both of us holding onto one another, both aware that this may be the last time we are together. 

Wednesday, November 11, 2015

So what had Happened? Curious?

I am so tired.  The tears sting my eyes as I struggle to open the padlock on the security door, and then open the locked door while balancing the files of court documents in one arm and my bag in the other.  How many times do I have to bend down and look a child in the eyes and say “I love you still”, and then wrench their little arms from around my legs or waist while they are being pulled away from me by an abusive parent, a family member, a stranger or a social worker?   Another day in court. Another child I could not save.  Another court case where the outcome was a fait accompli.  The child’s fate was sealed before we even had a chance.

I lock the doors behind me, put the kettle on, make a cup of coffee and flop down on the couch.  The tears slowly flow down my cheeks and, before I realize it I am howling.  Great big sobs are forcing their way out from deep within my chest. I am struggling to breathe.  I am drowning in my grief.  My mind is numb.  I cannot think coherently anymore.  My thoughts are move between my own pain and, then to the children that have been taken away.  I remember what my mother told me.

“Dianne, you are farting against thunder”.

Perhaps she is right.  No matter what I do, no matter how hard I try, no matter how much I love, I can’t seem to make the social workers or the Commissioner of Child Welfare understand that the interests of the children come first.

And I hear my own voice howling in the emptiness and silence and wonder if the sound is really coming from me.  Have I become insane?  Have I finally and truly lost it?  Is this the moment that I give up and leave it all behind?

I struggle to bring my breathing under control and to stop the hideous howling that is coming out of my mouth.  I grab a tissue and, wipe the snot and tears away.  I look at the horrible distorted face staring back at me from the mirror.  The vision staring back at me makes me start crying all over again, and now I can’t stop.  I lie down on the couch and bury my head in a pillow and, sob until I fall asleep. I wake up hours later, cold and disorientated.  And then I remember. 

(Book available from Kindle and from Megabooks, Cape Town). 

Just when you think you can't take one more step, you find you have taken another three.

Activist refuses to let illness stop her walking for a good cause
HUMAN rights activist, Dianne   Lang,  refuses to let illness hold her back and will join thousands of Bay residents walking for a good cause tomorrow.
The 59-year old Engcobo-born  Lang  has been living with hypo gamma globulin anaemia – a rare type of cancer – for five years and had a bilateral mastectomy on July 22.
After being bed-ridden for months, she will walk in the Algoa FM Big Walk tomorrow.
Lang  is kept alive by the cell transplants she receives every second week, donated by people through their blood products. This gives her a temporary immune system for two weeks.
“It is either I am being completely stupid or I am being brave enough to show people that if you want to do something badly enough you can do it, there is no excuse,” she said.
 Lang  said her physicians had advised her against participating in the walk.
“They say I am taking my life into my own hands. I may not walk far because I have exertion asthma from the hypo globulin anaemia and peripheral neuropathy, which means the nerves to my legs and feet are dead. But I want to go as far as I can.”
While other walkers will walk in pink,  Lang  will tackle the 5km walk in orange because the ribbons for leukaemia are orange.
“I will be walking for rare diseases South Africa. I am doing it so people can see that there is more to cancer than breasts, there are other rare diseases, and rare diseases are kept outside of the loop,”  Lang  said.
One of the major challenges is the isolation that comes with rare diseases, she said.
“When you have a disease like this one, you grieve for who you once were, you get to a point where you have to redefine your life and say how can I live my life with meaning within the limitations that I have.
“If I cannot inspire another human being and make them examine their life, then my life becomes meaningless. If you look at my physical condition I know it is a crazy thing to do, but I want to die with my boots on.”  (Written by Siyamtanda Capacapas)

It was not a clever move – my walk/roll in the wheelchair put me into hospital the following day and I only came out this afternoon.  BUT I DID IT!!!    The ferociousness of the human spirit is unparalleled anywhere else in the world and can overcome far more than you think it can.  Just when you think you can't take one more step, you find you have taken another three.