Friday, December 13, 2019

A very different Christmas

1982  - and not a penny to my name.   It was the day before Xmas. I was a single mother with two children and my son’s birthday was on Xmas day. I was feeling terribly sad and not knowing what to do. In a walk to the letterbox to check the mail with no thought in my mind, I opened the post box to find an envelope in it with a R100 check in the envelope made out to me. There was no sender and it was a bank cheque.
I drove my clapped out beetle, with no floorboards, so the children had to sit with their feet on the seats as we could watch the tar passing by as we drove and I went to the bank and asked them who had sent the check to me. They told me that it was an anonymous gift.
That R100 made the most wonderful Christmas with food and presents including a special one for my birthday child.
I have never forgotten that Christmas donation and every Christmas since that day, I have found a family to repeat the gift that was given to me.
It was also that Christmas that we started the tradition of no Christmas gifts for one another but rather a letter written to one another, recounting all the good things that that person had done or had meant to us during the year. It sounds like a simple enough gift, but the letters took a long time to write because it had to incorporate everything good that had come from that person for the entire year. The other rule was that the letter had to be handwritten and had to have a handmade envelope.
That Christmas tradition as a gift has been a tradition since then – no Christmas presents for the three of us but a beautiful letter showing us what we mean to one another.
Getting these gifts of letters ready to be in time for Xmas has to be started on the 1st of December to be in time for the 25th. The only gift that is given is to my son whose birthday he shares with Jesus.
Perhaps you may like to make this a tradition for your Christmas instead of buying into the commercial Xmas that most people turn into a frenzy of buying and over-eating.
I would like to wish you a Christmas that will be filled with good memories for years to come and that the New Year brings you everything you need. Merry Christmas!!

No One is coming to Your Rescue



It is an awful feeling to feel so unimportant and irrelevant - the specialists (consultants) who are so happy to take your money at over a grand for a few minutes of his/her time during the year become unavailable when they holiday from end of November until February. No one really gives a shit about their patients.   And when their bills start rolling in from banks for bonds and cars, suddenly we become important again - important enough to give us a few minutes of their time. And because my illness is rare, I have to hunt for one who is prepared to walk this path with me. 

I have not had the correct treatment since August because Discovery won't pay for it or at least, they are prepared to pay R15K a month for it and my co-payment is R162K.  No one can afford that.   They will, however, pay in full,  the immunoglobulins I am allergic to and they will also pay for the management of the allergic reactions. 

Because the reactions and the downtime after the infusion are so horrendous, the specialist thought to give it a skip for a while to see how it goes.  I did not bother to argue (because she does not like the fact that I know more than she does.  My previous consultant retired and I never had this much trouble with him) because it is so awful for me that I was willing to skip a treatment ... even though I knew that it was against medical protocol for the treatment and management of PID.   Well, I have had an infection every single day since my last infusion which was in August 2019. 

My last pre-authorised treatment is for Wednesday.   The specialist is not working and the offices are closed.   I have booked the bed, sorted that the pharmacy has the medication available for that day and all I need is the doctor to write out that script for the nurses to follow - but she just does not return a call, no matter who you leave a message with. 

Does she care?  No.   I have renewed respect for GP's and a poor opinion of specialists. God help anyone with a rare disease in South Africa - it is what I imagine hell to be. It is hell on earth.  Come on Dianne, get up and get with it.  No one is coming to your rescue.  You have done everything you can.  It is now time to set it aside and leave it up to God.   This is only a bump in the road.  Deal with it!!  

Sunday, December 8, 2019

Eskom Fucks with the Neurons in my Brain

We may not be the only country that is load shedding electricity in the world, but we must be the dumbest of them all.  
The excuses that are used by Eskom or the ANC/government are plentiful, from not enough coal to wet coal.  Their excuses are now accepted with a shrug of a shoulder because they are as insightful as the reason for the big swimming pool at Mr Zuma's home is in case there is a fire. 

 Load shedding?  It's a total fucking black out and fuck the PC name.  Load shedding sounds closer to taking a dump or having a shit.  They kind of go together and it is all a load of bullshitting the masses from those who sit in their very wealthy positions looking down on us plebs ... arrogantly thinking we are going to swallow any bullshit about their cockups as the truth. 

 And this f*&%ing load shedding crap is getting on my used to be tits - what about those who are dependent on oxygen and therefore dependent on electricity? I was going to leave just a few words of sarcasm on my FaceBook page  .... but my ire got the better of me and I had to say it - This is a clusterfuck cuntree. (A kingdom is ruled by a king and a country is ruled by a c%$t)    We still have freedom of speech, don't we? Fuck all those who are in positions of power and they just don't cut it - because they have been promoted beyond what they are capable of doing and then there they sit - another department screwed.  How can I say I am proudly South African.  It is an embarrassment!!

 OXYGEN THERAPY - per kind favour of google:    Anything between 92% and 88%, is still considered safe and average for someone with moderate to severe COPD. Below 88% becomes dangerous, and when it dips to 84% or below, it's time to go to the hospital. Around 80% and lower is dangerous for your vital organs, so you should be treated right away.    And these F%#$ING tossers have regularly put my saturation levels as low as 40.   They are killing off my brain cells and destroying the swearing filter.  

 They seem to find more and more ways of killing us off.   I would be dead without that generator Patrick just bought with money we don't have.  How many people have DIED from their LOADSHEDDING???? 

 Here is a joke for those who want to live but are dependent on oxygen and therefore on oxygen for their machines .... The Constitution ..... We have the right to life.  We pay for our electricity UPFRONT and then they decide when we can use it.  It is taken away from us without our permission  - is this not theft on a grand level? 

 The MOTHERFUCKERS don't even tell you the correct time they going to switch off the electricity so no one is prepared .... it takes time to start up a generator and get plugs changed so that one can keep on breathing ... and every second feels like an hour ... and you are screaming inside that you want to die ... and you have never felt such suffering ... it is indescribable ... that time without sufficient oxygen.

Thursday, November 7, 2019

It should be a CRIMINAL OFFENCE to load shed Electricity - people die!!

Port inserted into the heart to access veins that no longer work. 
What a night with a 4-hour power outage. We changed onto the inverter and put the portable oxygen on. The inverter is not strong enough to last the 4 hours so .... fortunately Patrick left me sleeping and I only woke around 3.30 am, battling to breath with my whole body on fire. I was in hell itself and would have died if I had not had some training from Shaun January who visited me at home the night before because I was too ill to deal with doctors at ER or Specialists who know nothing about my disease. I have been down that road too many times where my symptoms are dismissed because they are not typical or normally sick people. The joys of having a rare disease.
Remember Dr January is the only doctor who knows a lot about my illness but who does not have an agreement with Discovery because they did something illegal, Dr January took them to court and he won and Discovery refused to honour any of his claims since then. So, I get him when I am desperate because I have to pay for him and the medication without being able to claim it back. Sometimes I have to see two Doctors because the medication is so expensive that I see another GP and ask him to write out the same prescription as what Dr J had given me. That way Discovery pays for the medication that was first prescribed by Dr January.
The reason for my lesson the previous night on what to do when I run out of oxygen was because I was alone at home and had to take the oxygen off to open up for the doctor. By then my SATS had fallen so low that Dr Jan had to help me back to bed, put the oxygen on me, hold my hand and tell me not to move or talk and to breathe in 3 through the nose and six out the mouth ... and try not to panic. He then prescribed SL fast-acting tranquilliser because he said that struggling for breath puts you into a panic (which was happening) and that would make all the symptoms worse. Lack of oxygen is fatal. You die.
And last night I had the tranquilliser and lay still and quiet while Patrick held my hand. Eventually, God, Eskom, the municipality or the ANC - whoever, came to the rescue and returned our power that should be a criminal offence to turn off, especially for those whose lives depend on power for oxygen. It took an hour of medical interventions such as IVI Solucortef and nebulizing and pills and ivi pain medication before I settled. Damn this country for not even being able to give us the power that we pay for upfront. #fuckeskom #fuckANC #fuckloadshedding