Wednesday, February 22, 2017

I cried today ....

My beautiful Mother on Xmas day 
My mom came to visit me today.  She is 84 and she drove her Volkswagen Beetle 50 km here and 50 km back home to rub my legs and give me a reflexology treatment.
While she was doing my feet, I fell asleep.  She sat quietly holding my feet in her hands until I woke up.  Then she and I staggered to the bathroom to go to the toilet. The blind leading the blind.
When we got back to my bedroom and she had helped me into bed, she said,
          “I say thank you to God every single morning that He has given you to me for just one more day”.

I started crying and could not stop.  I am one of six children … where are they?  And why are they not at her side during these last days of her life.   But I cried most because every day that I live and suffer, she is so grateful that she thanks God.  And all I want is to stop suffering – for it all to end.  How can I end it now that I know that she thanks God for giving me to her for one more day?  I thank God for having a mother who loves me so much.

Friday, February 17, 2017

Discovery discover new ways not to pay

.I dread every New Year, because until you consider what the new year means to those of us with a chronic or rare illness, you would consider me odd. It means the dreaded pre-approval and coordination of benefits, which translates into hours on the phone with people who have little or no understanding of the rare and chronic illnesses.  Trying to get approved for medications or treatment we need to survive and more often than not, we have been taking it for years, is a nightmare. Every year my physician writes the same letter.  The first year was a nightmare because Discovery had never heard of the diagnosis so there was no ICD 10 code.  But the last three years have been easy.  It was granted quickly. This year has tested my limits, and the limits of Dr Stern.  Instead of me receiving IVIG bi-monthly, Discovery have, in their wisdom, decided that I can only be treated once a month and it will be taken out of my hospital benefit. This is probably because the medication that I fought so hard for to be allowed into the country by the Medicine Control Board is so expensive.  In their wisdom, the Medicine Control Board closed the laboratory at the Western Cape Blood Transfusion Services and within one week, there was no medication for those of us who need it.  It is also used for burn victims.  I can only shudder to think about our burn victims in the state hospitals who have no access to Stabilized Human Serum.   The alternative to SHS is polygam, with is around R8000 a bottle instead of the R1200 a bottle from the WPBTS.  I cannot use polygamy because I am highly allergic to it.  Hence the fight to get the Octogam from the USA.  It costs R28000 for a bottle.  I am sure that Discovery’s refusal to give me the correct dosage is due to the cost of this medication.   How easily one could buy health if one was rich!  The motivational letter has explained to Discovery that without the correct dosage (bi-monthly) his patient is at serious risk of fatality from an opportunistic disease.   While I am most grateful to have a medical aid as many do not have one, it is still frustrating to pay R4506 a month to constantly be told to motivate the reason for the medication or treatment.  D96.8   At least we have a code now, but denying me the correct dosage of medication is a risk to my life. The first year I took Discovery to the Medical Control Board and an online interview was conducted.  Ten minutes before it was to start, I was given the authority.  It seems I am going to have to do that again this year.  Our constitution says we have the right to life, and with-holding my IVIG is a risk to that basic right.  When they closed the laboratory last year, Discovery paid for bi-monthly Octogam but this year they are refusing.  I was without IVIG for 6 weeks and could not leave my bedroom or see anyone because I had to stay in isolation.  I thought I was going to die, I was that ill without the IVIG. (IVIG stands for intravenous immunoglulin).I don’t think this is personal.  I think they operate like insurance companies.  There are standard letters that go out refusing approval and when the third letter arrives, then they look into it.  I don’t have the pleasure of many weeks or months to get this medication.  I am supposed to get it next Tuesday, but I cannot get a pre-authority in such a short time.  Even with a pre-approval from Discovery, I still have to phone in for a separate authority number every second week for the following week’s treatment.  The craziest thing about them denying me the IVIG bi-monthly is that they want motivation from an immunologist and they know (because I have asked) that we do not have an immunologist in South Africa. Bring on Monday Morning. I refuse to be buried until I’m dead – and Discovery will not make that decision for me. 

Monday, February 13, 2017

Appointment with a killer - Heinrich van Rooyen

My view for over an hour and a half
Last Sunday was a day from hell.  We had made arrangements from the previous visit that we could drive our vehicle into the prison to Medium B.  It was all worked out.  Be there at 8, see Heini and by 10 Patrick could be at work.   And I woke up as sick as a township dog but Heini knew I was coming so come hell or high water, I would be there.  The wardens only know Heinrich van Rooyen by the name of "Heini".
Nothing in Africa ever works according to plan.  Different staff were on duty and because I am in a wheelchair, am unable to go from the main gate with the bus to the various sections of the prison; in my case Medium B.  I had to wait for a member (that is what all the wardens call themselves and they are addressed as Sir).  The title of this article is to draw your attention, and does not mean that I believe he is guilty.  I believe in his case it was a gross miscarriage of justice and corruption by the police. The police are looking into the new evidence brought before them by Alan D Elsdon.  Time will tell of this political hot potato in a later article.
I needed to wait for an official vehicle from inside the prison to come and collect me, as took place the previous visit.  This took more than an hour and a half; every query treated with respect by a member – but nothing happened.  I was feeling more and more desperate, more and more ill and nauseous, and extremely stressed by Patrick’s need to get back to work. Fortunately, I carry extra medication and injected myself sitting in the vehicle outside the main gate.
Patrick offered various options to the members, one being for two or more members to drive us inside the gates.  We were told if we wanted to do that we would have to get a letter from Stander, who was on duty in Medium B.  But Stander had been called a number of times already.  By now I was crying.  I had no way to notify Heini that I was not coming and for me a promise is a promise.  Patrick needs to be saluted for his patience.  We watched the bus come and go from the main gate to the various sections of the prison, but they would not take me in the bus – I had to wait for a member to come and fetch me to take me inside to Medium B.
By the time I was eventually fetched, I was crying, sobbing and distraught.  Even my water that I had taken for this supposedly hour visit was finished.  I just could not stop crying, no matter how hard I tried to pull myself together.  The member who drove me into Medium B was very kind.  My plastic packet was searched (for the first time) and Heini knew I was bringing him a harmonica amongst his registration papers for IT. The harmonica was taken from me.  The member told me that a knife could be made from the harmonica.  Because it is my favourite Lark harmonica and the first one I learned to play on, the tears started again.  The member promised to give it back to me after the visit, which he did.
My wheelchair ride from the vehicle into the building was a nightmare but it was being pushed by one person after another, by visitors and members alike.  Once inside the building I asked to see Mr Stander and then Heini, as I had been told to do at the main gate.  Mr Stander was busy so I had to wait, knowing in the background of my brain that Patrick was late for a job. I saw Mr Stander, told him of my woes of getting into the prison and then I was pushed into the visitors’ area while Heini was called.  I had my back to him so I did not know that it was he who wrapped his arms around me from the back, but when he came to the front of me, his face went white.  “Oh, God, what happened?  What happened?  Why are you crying?” he asked.  I told him and explained that I could not stay long.  I handed him his paperwork spoke quickly and we just hugged, with me still sobbing. He    continually wiped my tears with his hands for I had no tissues with me.  This was not how my visit was planned.   My mom had sent him R100 which a prisoner can spend at the small shop in the visitors area so we went through the motions of writing down what he needed and then going to the shop.  Heini did the pushing. I felt safe and a lot less unhappy and the tears had dried.  At least Heini knew that I had not broken my word.  During our brief visit, a member came to ask me for my name and ID number, which I gave.  Heini had to give his name and number.  I was asked questions about Patrick but I did not know the answers.  Heini was distraught at seeing me in such a condition and so ill. With the shopping done, I asked Heini to take me to the entrance so I could get back to Patrick. 
Then one of two miracles happened.  Our leaving was interrupted by a man from the shop calling us over.  He put out his hand for me to shake and said, “Thank you for visiting Heini.  You have made him very happy”.  Heini was elated…”Did you hear that?  Did you hear that? That’s never happened before.  “It’s a miracle”
We hugged goodbye at the gate and I was pushed by another pleasant member to the street to wait for transport and the second miracle happened.  Patrick was waiting outside.  I was given my harmonica back and given a letter, signed by Mr Stander allowing Patrick’s vehicle, with his registration plate, ID etc, the name of the offender and my name and ID number.  The letter stated that I was allowed to be taken to Medium B in Patrick’s vehicle.  A true miracle.  One I never expected.  I have high regard for the wardens who have dealt with me to date.

I am slowly learning the rules. There are no memos for people to know what can and what can’t be done. It is 4 am and I am awake because I had to nebulize and inject myself.  I can’t get back to sleep so am writing this.  If you can assist me in any way, please contact me on or watch my video, or follow my previous blogger posts.  We need items for Heini’s IT Course, Alan Elsdon has painted himself into a corner with this investigation so we need money for petrol for him to take the case to Cape Town now … and I need help with his tuition fees.  We hope he will be released but in the meantime … TIA. 

Sunday, February 12, 2017

Our disgusting State of the Nation Address

Our country is is in ruin...we are a corrupt and disgusting people...words fail me in my anger and embarrassment about what the world thinks of us. 
However, I think we may have another option to the eye for an eye.  Non-violent disobedience and growing our own selves. 
Change in a country starts with one person.  Yes, I know our country is burning and I know this is a formidable task to overcome, particularly in the aftermath of our SONA.  I have a million negative things to say about that, but for today I am choosing another path.
 Each country reflects either the pace or the turmoil of its population.   As one person changes, so does the environment around them change. It is a law of nature.  Change in one brings about a change in another.  I have seen it work time and time again when interacting with those who are extremely opposed to my ideas.   Through immense love, one person has the power to change an entire population – it all starts with us.  We cannot bring about peace to South Africa until we have conquered the harshness and replaced it with peace within ourselves.  This is a HUGE task that we can set ourselves to doing.  Our job is to first bring peace into our own lives and then we will become a gift to our country, and perhaps even to the world.   If you have ever studied quantum physics, you will know that the flap of a butterflies wings can bring about a storm somewhere in the world. 

This task is an enormous one for me – I get so worked up about injustice that the furthest thing from my mind is peace, but I am going to try.  Why not join me in this most difficult task?

Friday, February 10, 2017

The Manuscript ...

I have started writing the sequel to Saving Mandela’s children. The title will become apparent in the next paragraph.  But every now and again I have to lift my head up and look elsewhere so that I do not drown in the emotions that this manuscript is bringing out in me.

Writing is a solitary activity that requires a ‘spark’ or a ‘creative streak’, without which not a word will appear on a page.  This book is no nansy-pansy book with long descriptions of the undulating hills and wide open spaces of the Karoo.  It does not describe the extreme weather conditions.  It is explosive, very much like the code name given to the investigation by the Scorpions into my theft of donor money, money laundering and other equally horrid crimes that presented a prima facie case.  Operation Dynamite!  It is 3:15am in the morning and although I woke to nauseating pain and an inability to breath easily, once I had done all I could to alleviate the symptoms I started writing again.  Glancing at my watch, I see that I have been awake and tending to the oxygen, injections and sterilizing unit since 2am.

To take a document of 889 pages and turn it into a short synopsis of what happened is no small task.  I am now on page 70 and to make sure that I have everything covered, I am ploughing through lever arch file after another.  I have kept these documents through the years as a record to use one day.  That one day is now.  It is a task which is destressing as I re-live those times, with all the emotions attached to them, as though they happened yesterday.  One good thing will be the clearance and dumping of these numerous files, thereby making my life and my home easier to manage.  I want to leave all this stress behind once and for all.  I no longer need to carry it, but I do have an urgent need to write down what happened so that my grandchildren can know that I was never a thief or criminal. 

Happiness comes from serving others. There is no other kind of happiness.

Heinrich van Rooyen and the road paved to heaven with good intentions

How do I apologise for making such an arse of myself again?  I had made a video and it was my last try when I thought I had said what needed to be said ... and guess what?  The video I put onto this page was one of my stupid beginner video's which ended with "Oh fuck!".

You see, I have never done these types of videos where you talk to yourself and then put it out there so it was a bit of a hit and miss affair.   The final video, which I thought I was loading onto blog was actually only 8 seconds long with just a few words and most of them swearing. 

I have a great video that I would have loved to have shared about Heinrich van Rooyen but it is 4.5 minutes long and blogger says it is too big a file.  Now I am left feeling like a real twat for sending it out and then deleting it. 

I don't have the energy to do it all over again and with the smallest number of words - easy if you can write it and read it, but it would not have the right impact. 

I wanted to share with you my experience of Heinrich van Rooyen, who is sitting in prison for the murder of those two girls in Knysna in 2005.  And I wanted to tell you why I needed help from you - not only for Alan Elsdon who has painted himself into a corner without funding for the three years he has been investigating the enormous corruption and cover-up of the murders.  I have seen those documents - there is no possible way that Heinrich could have committed those murders.    And the other thing I wanted to share with you is what he has been doing with himself in prison all these years.  He has only one semester to do for his qualification in IT and I needed help with a laptop with a decent processor (now I know I don't know what I am talking about). 

Maybe when I feel more energetic and can say what I want to say quickly, I will repost the video.  The terrible shame of so many people who can and could help us out with even R10 or R20, or those who promise and don't make good on their promises ... while everyone goes out of their way to help the animals.  It was for this particular reason that I wanted to put that video on. 

I apologise for sending you a link that was nothing but rubbish.   Please keep reading my blogs, I do appreciate it.