Showing posts with label medication. Show all posts
Showing posts with label medication. Show all posts

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.

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.  

Thursday, June 30, 2016

The Problem of Having an Exotic Illness

Hairy Cell Leukemia on a blood slide 
Do you have a garden-variety health practitioner who deals only with the garden variety illnesses?  You still feel ill even after he or she has told you that your blood counts look normal?

I would like to share something with you that you may not be aware of, especially if you are newly diagnosed with some type of rare blood disease. Leukaemia is cancer of the blood and there are 17 different types, some more aggressive than others.  Having a rare one makes it that much more difficult for the patient because doctors are either not interested or know nothing about it.  Given that the average visit to your GP lasts 11 minutes, there is very little time to inform him or her about your type of illness.   Leukaemia means that it is also in the bone marrow and the spleen must remember that blood is the life force and without it we are dead and when we have something wrong with it – it circles the entire body giving rise to a whole host of symptoms. A full blood count means absolutely nothing when it comes to a rare disease and if your doctor has not realized that by now, it is time to review and perhaps change your medical health practitioner. The other thing you could do is to attempt to educate them and if that does not help, then do what is best for you. Change to someone who cares as much about your health and comfort as you do. 
Some examples: Platelet counts are one of the important counts when you have HCL – but having a normal or even being on the top end of normal platelet count means absolutely nothing. Did you know that the liver produces two enzymes (PT and PTT) which actually put the blood clotting factor into the platelet? My platelet count is perfect – but I have almost zero PT and PTT and therefore I bleed easily. 
Having a good result for white and red cells also means next to nothing to us – if the white cell is not mature, it cannot do the job of killing the bacteria, fungus, virus or cancer. If the red cell is immature or has too much iron, it cannot carry sufficient oxygen. 
If we, who have rare disease, do not become our own detectives, do our own research and take responsibility for our own health … leaving it in the hands of doctors who do not know better, we will not survive. As one professor told me, “Doctors only see what they recognise and only recognise what they have been taught”. This means that if there is an anomaly – a strange cell that should not be there – the doctor will just not see it. A normal FBC does not take into consideration the function of the cell and if a cell does not function then what use is the cell count?
Stop listening to the “Your blood looks good “just because it looks like everyone else’s blood. If those results were so good, then why do some of us still feel so ill? Find another health practitioner who has the capacity of listening to you and looking beyond the obvious.  There are only a handful of us with a rare leukaemia so we have to be the pioneers and go through raging rivers of doubt and illness, most of the time rudderless.  It is up to us to become the detectives and educate those around us.   Having a support group that shares information is possibly one of the best ways of gaining knowledge that will lead to a better management of our condition.  For those who have HC Leukaemia or HCL Variant, I invite you to join our FB page called Hairy Cell Leukaemia Support Group.  The knowledge you will gain there can only be of benefit to you and your health management team.  There is still no cure for this disease.  But by improving your knowledge you may be able to bypass further conditions that are linked to the blood and the immune system.   You need to know what blood tests to request.   Having Secondary Immune Deficiency from the chemo is easier to manage than having Primary Immune (PI) Deficiency.  The first can be treated and more than likely rectified.  If it is left undetected it could become PI and then you have another life-threatening, chronic illness to contend with.  Knowledge can save our lives.