Showing posts with label PinSA. Show all posts
Showing posts with label PinSA. Show all posts

Thursday, October 31, 2019

STONED ...


The picture here was taken so that I could show the nurses what happens when they try to draw blood or put up a drip and they have to use the chemo-port. Just one of the many, many challenges I have when I go into hospital and do not behave or get blood results like other people.

Doctors recognise what they have been taught and only see what they recognise is what one professor told me and that is so true. When looking at blood results, for example, they will count the red blood cells and give you a number which will tell you whether you are positive or negative or whatever, But they don't bloody look to see if the cell actually is capable of doing the job!! On my full blood count my WBC is way up there .... could never get sick on it. However, on closer examination, it is found that that little B cell is a blasted cancer cell and the other is immature so can't stop the germ. There is a missing enzyme.

And then, of course, there are doctors that think horses when they hear hoofbeats and will never hear the hoofbeats of a zebra. I am a Zebra. After what I could seriously call a basic human rights violation by the medical aid, I have decided to do my own methods and use those of the medical fields that can help me and I have my own regime ... one of which is having one hundred percent uncut black raw cannabis oil full dosage 3 x a day. The one thing I have come to like is this feeling that everything is going to be OK. And I truly believe if I can get to Bloemfontein to Dr Frieda Pienaar, she will save my life.


While being stoned during this new regime may sound good and hilariously funny, it also allows for massive creativity. The things I can make in my head ... and the words I type for my book just flows ... just being calm and delayed. So you mooching along happily and then suddenly ....you feel like you are dying ... you are back in that horrible body that aches everywhere, where the slightest touch of a hand on my skin feels like sandpaper when every step screams pain in a vomit sounding screech where you struggle for air and when you just can't lift your own leg into bed ... Fuck it!!. From the heights of glory to the pits of hell.

Friday, March 22, 2019

Midnight Freight Train of Pain

It is again 2am and I am alone (Patrick sleeping) in this world of blinding pain. I am recuperating from pneumonia and then get an acute colon infection which is making that pain train rush in on me faster than I can cope with. This has been one of the longest 24 hours of my life ... going from moment to moment, minute to minute and then making it one hour at a time. This is what will happen now without the IVIG (Octagam) - I will go from one infection to another until one actually kills me. But the fight for Octogam can only continue next week when the physician has to complete lots of forms for approval from government for us to import the medication ... once we have that authority, we have to have a clinical evaluation of why I can't have Polygam, a motivational letter for the Octagam and a new script sent to Discovery. They will then decide if they are going to pay or not. It is going to be a tough one, but one step in front of the other.
When I am in an acute infection stage, I need my pain meds more often and I know my body and how much is too much - and what can be used in safe dosages. Here comes the problem - Patrick does not understand that and has a go at me every single time I bring the pain meds closer together .... always because he is afraid I will become addicted. So what?? I am dependent on it and I am not on pain meds for recreation use - why can't I have more pain free hours so that my life has a little more quality. I am left here in extreme pain because of his attitude and what he said to me this evening. I have taken a less powerful pain shot to satisfy him when in fact, I should have just said - fuck you and taken the pain meds that I have for just such an event as what I am experiencing right now. He does not understand that I am chronically ill but that I get acute infections which needs more medication and pain relief. I am spending a lot of time on the loo - just shitting blood. Please God, help me get through the night.

Tuesday, March 19, 2019

South African Government denies Right to Life

PLEASE BUY ME MY LIFE by Dianne Lang
In their infinite wisdom, the Medical Control Council shut the Western Province Blood Transfusion laboratory that was making Stabilized Human Serum to treat Hypogammaglobulinemia, amongst other things.  The Western Province Blood Transfusion Services is a charity and did not have the money to equip a new laboratory so it was closed.
The only treatment available to South Africans is Polygam and Octagam, these being the only two products registered by the government.   Because of the horrendous side effects of this intravenous immunoglobulin (IVIG) I asked the Professor in Cape Town how long I would live if I did not have IVIG.  He said, “Three months”.   
Hypogammaglobulinemia is a rare disease diagnosed once in every 10 million people in which the immune system does not produce any antibodies and therefore the patient is susceptible to every germ, virus, fungus, allergens and bacteria around.  Every infection causes more organ damage and the more organ damage, the faster the organs stop working.  Most of us have huge problems with our lungs.  I am on 24 hour oxygen.  However, there are other conditions such as CVID that also requires monthly infusions so that those patients can stay alive.  IVIG also saves the lives of burn victims.
Discovery was paying for my Octagam after I went to their medical review board because I was allergic to Polygam.  This year they sent a letter stating that I would have to pay the difference between the Polygam and the Octagam, although at the dosages required, there is little difference in price.
I tried Polygam and with each successive infusion, my allergic reaction became worse until the physician stopped the infusion altogether because he said that if I have Polygam it will be a catastrophe that will land me in ICU on a ventilator if they can save my life.
My only alternative and the only two registered medications in South Africa are Polygam and Octagam.   I have not had Octagam for three months and feel so ill that I can only describe it as suffering.  No one would allow an animal to suffer like this. Every day is a borrowed day.  My response to Octapharma SA was that there are only two registered treatments, Polygam and Octagam, and Octagam is out of stock.  He has no idea when they will have stock but did say sorry and that he has no advice for me.  I have tried every hospital, pharmaceutical house and pharmacy in the country.  There is no Octagam.
In the USA they have many alternatives to use.  In South Africa they only have two.  But to get it from the USA to here with all the red tape and then to have to pay for it (I need 35g per month Octagam at R30K per month) is overwhelming in its complexity.  I am also too ill to travel to another country that may have Octagam in stock.   
Somewhere someone has to help me to get the medication and buy me my life.  Our Bill of Rights says that we have the Right to Life.  The South African Government and Discovery are denying me my right to LIVE.

Can the Minister of the Department of Health or the President, the Public Protector or the Medical Control Council please make sure that I can LIVE?  Can anyone buy me my life?