Showing posts with label medical. Show all posts
Showing posts with label medical. Show all posts

Friday, December 13, 2019

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!!  

Wednesday, August 3, 2016

Lourdes

Lourdes

Being a Roman Catholic by birth, my connection with St Bernadette and Lourdes has been a long one.  I was told and then read the story of the miraculous healings that took place in Lourdes after the Virgin Mary appears to Bernadette.   When I was 11 years old, I was told by my parents that my beloved grandfather was dying.   I begged and pleaded with them to take him to Lourdes.  I knew in my very heart and soul that if we could get him to Lourdes he would not die.  I did not understand why it could not be done, nor did I understand the implications of a dying man and the distance to Lourdes.  It was only when I was a young adult that I realized the impossibility of my request, but for years I held a terrible resentment because I thought no one loved my grandfather enough to take him to be healed.
When my niece, at the age of 3, was diagnosed with a very advanced stage of Crohns Disease, I made it my business to raise the funds to send my mom, her mother and her to Lourdes.  She was very ill when they left South Africa and after one day in Lourdes, she sat up and said she was hungry.  On her return, the gastroenterologist could find no sign of the disease.  That was almost 25 years ago.
My next sojourn to Lourdes was to take my daughter, diagnosed with advanced sarcoidosis and very little lung function.   She went into remission within weeks and has stayed that way.  She now has a 16 year old daughter and a 6 year old son.  Another miracle.  

Lourdes is the most holy place I have been and I have traveled a lot.  The very air of the town and around the grotto is filled with an energy that made me feel that I had champagne bubbles in my heart.  I could not even stand at the grotto – it was as though the very earth pulled me to my knees and I could feel the unbidden tears rolling down my cheeks.  To see that same rose growing out of the rock after more than a hundred years was in itself a revelation.  Now I want to go.