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. 

When we can't pray, Jesus gave us some words to use.  They are but a mantra that people utter with no insight or concentration.  The only time the Lord’s Prayer feels like I am connecting to a higher power is when it is sung.  This morning I wrote one that has meaning for me.  Maybe it will help you.  Here it is:  

Father, who is love within and around me

You are holy beyond my understanding

Let Your kingdom of love and goodness be carried out by me

Here on earth as it is done in Your spiritual home that awaits us

Be the fulfillment of my every need and brighten my understanding

Thank You for the blessing of being free because You showed me how to forgive and to continue doing it

Teach me to know that You are always with me and lead me away from all negative thinking

Keep me from feeling separated from You and other people; keep me connected and compassionate.

For Your kingdom is within me, Your power and glory fill me, for ever and ever, Amen. 

We can measure length, depth, speed, intelligence, things that can be seen and things that can only be seen through powerful microscopes.  What can’t be seen cannot exist…right?

Not so with pain or nausea.  Pain is the great leveler and the un-measurable.   For the life of me I cannot imagine why, in 2016, we have nothing at all sophisticated enough to measure pain other than the silly question of “On a scale of one to ten…ten being the worst, what number would you give to the pain you now feel?” This type of scoring is next to useless.  The more pain you have endured in your life, the more you can endure.  Does that make it alright then to with-hold pain medication just because you can handle pain and give a score of 5?  What about the wimp who gives a score of 10 for a splinter?  Does that give him the right to adequate pain medication?

And then there are those doctors who constantly refuse or warn you that if you take that type of pain medication you are going to be addicted.  Who the fuck cares about addiction when your life is not worth living due to pain? 

Having a rare disease, which often goes with two or three other rare diseases, is one hell of a way to live.   No one can see it, most of us are told we don’t look sick and most medical practitioners will never see your type of disease in a life-time.  The rarer the disease, the less information there is because research money will not be used for a handful of people suffering from one or other rare condition.  

And then there are those well-meaning people who don’t think further than their noses who will say, “Oh, but you don’t look sick”.   I so often want to tell them to go get themselves a dose of it and then come back and talk to me again.   I get frustrated, angry, depressed and feel that I am no longer useful because I can’t do what I used to be able to do.   My head gets in the way of me allowing my body to use its own intelligence to heal itself.  I want to be in control.  I want to tell these germs, bugs and cancer to fuck off.   I often feel like a dog that wants to go and hide under the hedge to get away from everyone…somehow to escape the fear and angst I feel.  It is very difficult to carve out a new life when your old one is taken away due to illness.  And then there are all the aspects that go with a lost career – the financial strain, the strain on relationships and the inevitable loss of friendships.  It is only the truly remarkable friend who will stick with you – like all relationships, friendships need constant give and take and when you are chronically ill, very few people will stay the course with you.  You are often just too tired or too sick to keep appointments or to put much value into your relationship.

Then there is the spousal/life partner relationship that goes for a ball of shit as well.   Instead of being the lover and the home-maker, the spouse becomes the care-giver and there goes your sex life.  It is difficult for anyone to move from care-giver to lover and the partner who is ill feels less and less worthy and less and less loved.   It takes a very special kind of partner who will not only keep you feeling loved, but will also help you to fly your kite in the sky instead of under the carpet.

It is a fucking awful existence and it is a wonder that so many of us still choose to live, despite the enormous obstacles we face.   "Get busy livin', or get busy dyin' ", - Andy Desfrain- Shawshank Redemption.  Let us all “Get busy living”.

Stay “busy living”, irrespective of what you are going through.   It is a tough choice when you feel like you are busy dying, but it is a choice we can make and our attitude will pull us through one challenge after another.    

You are my sounding board – you are my confidante.  You are the one that I talk to and share what I am feeling.  Yes, I am talking to you.  There is nothing that I will not share with you.  Often I will verbalize the very things that others are too afraid to say.  My world has become small and therefore I verbalize exactly what I am feeling in that moment.  Tomorrow I may feel different, but today I have things that are pissing on my battery.   It is about those Ribbons.   I am entitled to wear an Orange Ribbon – and  that Pink Ribbon???  The one that everyone now sees as breast cancer and that is worn by people who have breasts, be they reconstructed or still as God gave them?  What lies beyond it is not all fluffy and cuddly and warm with comfort from all and flowers galore.  I look at pink ribbons now and I just shake my head.  What do these Ribbons mean to others?  Do we who have the right to wear them because we are living with the disease get more compassion? No.  Do we benefit in any way? No.  Do others offer any help or stop to talk? No.   If ribbons were badges then my chest would have quite a few.  Perhaps I should do that.  Then people would notice the ribbons and not my flat chest.  And now I wait to see if I get to wear the Emerald Green Ribbon too.  Unlike the soldiers who earn their ribbons and badges, we just go and get one for ourselves.  They are not conferred upon us.  But today, I salute all of you who wear a ribbon of colour.  You are also brave, just in another way. 

I have a rather unsettling story to tell.  It is a story of lost memory, confusion, fear and cruelty.   The only way I know how to get past a traumatic experience is to write it down or to tell someone about it – someone that I can trust completely.

I can never just push a switch like so many can do and just say, “Well, that is in the past and there is nothing that can be done about it”.  I spend hundreds of hours going over and over the event until I can understand it for myself. 

I do not like to talk about other people, although I feel that I have a right to speak about my own experiences.  For this reason, I am not going to mention anyone’s names.   The people involved were  nursing staff, doctors, the police and three others who thought they were doing the right thing.   How wrong they all were.  What I suffered is almost beyond telling so this is just a quick summary of what happened when I went AWOL for those months.

 Today, I understand what happened and yet, there is not one medical professional that knows what happened…let alone cares.  I, like us all, am just a number and that number adds up to money.  Medicine today is about money and sadly, no longer about care.  If I have learned anything from this it is to know that if it is to be, then it is up to me.  Only I know what it is like to live in this body and therefore only I know what it needs to be well.  There is no medication that is a cure all for everyone.  We are all different and react differently to the same drugs.  

The bulb went on and has stayed on since last night.  I found the reason for my short term memory loss and my extreme fear of going into hospital has made me distrust everyone.  It has, however, made me strong enough to be able to tell the medical people what is wrong with me and what they should do instead of putting myself at their mercy. 

But how … how could I have done that when my mind was gone.  How could there have been no other option than to have me sectioned?  I was categorised as psychotic and schizophrenic then taken by the SAPS to Livingstone State Hospital.   Before the state hospital there were three other hospitals that “tried” until my significant others were told they have no option but to have me sectioned.  And that is exactly what happened.  Thank God for the female psychiatrist who saw me at yet another institution.  She asked, “What do you want from me?”  My answer was simple.  “My mind” She recognised that lack of sleep and uncontrolled pain can cause confusion and loss of memory and put me on medications to make me sleep.   It worked!   However true that may be, there had to be something else that triggered that set of circumstances and so I spent those hours trying to understand what happened to my January to May 2016 months.

Someone brought me a book day before yesterday to read.  It is called Proof of Heaven written by a Neurosurgeon’s Journey into the Afterlife (Dr Eben Alexander).  I had not got past the first 10 pages when I jumped onto Google because the similarities with his illness and mine were astounding.   As with me, he was infected with klebsiella pneumoniae although he did not have anything wrong with his immune system.  The klebsiella had entered his cerebrospinal fluid and was literally eating his brain.  In my case, I have  two of the hospital superbugs, klebsiella pneumoniae being one of them.   These bacteria, resistant to antibiotics, are deadly, depending on the strength of the patient’s immune system and the area or organ of the body that it infects.

Scientists from the University of Miami and Columbia University in New York City suggest that there is a link with vascular disease (leukaemia) that worsens memory through this immune pathway (the blood) and those most at risk are the patients that have klebsiella pneumoniae and H pylori.  I have been unfortunate enough to have both of these bacteria colonizing in my stomach and kidneys.  There is a war raging in my body; these bacteria and my own non-existent immune system.   Having Primary and Secondary Immune deficiency necessitates a transfusion of donor immune cells into me every second week.  The war is on between my propped up immune system and these deadly bacteria which cannot be adequately treated with antibiotics while cortisone therapy depletes even those donor cells I receive. 

Why then did not one medical practitioner look further than their noses to see that my own body was the cause of my memory loss?  I kept on telling them, over and over again, that the only thing that was wrong with me was a short term memory loss.  Why did not one of them listen to me and look further to the possibility of these deadly bacteria affecting my memory and simply stamp me as psychotic and schizophrenic? 

I kept on asking them to please give me my IVIG so that it could fight whatever was going wrong, but in their “absolutely never can be wrong” attitude decided that I was too psychotic to lie still enough for the transfusion to take place.   Added to this was their idea that I was having an opiate reaction and that I was hooked on opiates that were making me psychotic.  Not once did anyone think that it was possible that the very bacteria and viruses that I fight in my body every day of my life could have been the cause of my memory loss.  I wrote screeds of stuff on any piece of paper I could find, trying to stay in touch with what day it was, what time it was and what was going on in my life at the time.  It was during this time that I felt so detached from everything around me that I hummed and then sang my tears into prayers.   If you have a mind that is intact, rejoice!  Do not allow it to feel depressed or sad.  There are far too many days that we forget that at the end of it all, it is the mind and your connection to God that is the most important aspect of life.  And with those two things connected and intact, I go to war against the bacteria and viruses that lurk around my body.  It is a fight that I intend to win. 

Every single day I think about my FB friends and wonder how each one is.  I was really blessed with an incredible memory because for each person who passed a comment on my previous post … I know you.  You are not one of a crowd.  You are an individual and I remember you from the first time we became FB friends; I remember what you have told me, what you do and the things that lie within your heart … the things you shared with me that remain exactly where you left them – in my heart.

I wonder why it is that we have to learn things about ourselves by going through the fire that rages around us!  I look back over the last six months and realize that only when my memory was taken from me did I acknowledge to myself that my mind was the most important thing that I possessed. 

Last night I wrote in big capital letters the following words: “LIVE WELL” and underneath that in the smallest writing I had written “how?”  Actually, today that page is very funny. 

When I think that I am helpless, I always look around to see who I can help but this time, I felt that since I can’t help myself, how the fuck could I help someone else.  Slowly, like a plant growing out of a crack in the cement, I began to make a list of the things that I can do well.  Just like it took me a long time to learn to like and love myself, it took long hours to find that I can do some things well.  I can communicate, summarize, have compassion, empathy and I am crazy enough to believe anything is possible.  The “me” that is “me”, is already a miracle!  And reading your comments has made me realize that I can mean something to someone else, sitting right here alone on my bed.  I don’t need to have people around me.  I don’t need to be constantly reminded that I am worthwhile.  I already am worthwhile.  The most amazing thing I learned over these six wilderness months was that you can pray when words and language and memory are taken away – you hum … you sing and then you find that He and Me are one … right there with you, inside of you, around you, above and below and all one needs to do is to dedicate that “thing” towards healing the “me” that is lost and/or sick.  For me, that “thing” was my tears.  I turned my tears into prayers.  This must have been how the ancients used sound to maintain their essential selves.  I am no history buff, but it kind of makes sense to me now.  I am going to share something that is very personal with you.  Maybe my words will resonate with someone else.

May my tears be my prayers of hope

May my tears keep me close to You

By Your grace alone, I survive

You are my refuge, my comfort and guide.

May my tears be my prayers of thanks

May my tears be my prayers of love

All that I am and all that I have, are riches that come from You.

May my tears be my prayers of peace

You alone protect and guide

Lord, be with my mother

Lord, be with my children

Lord be with Patrick, every moment of every day.

 May my tears turn to smiles

That my soul sees a rainbow

You alone know our needs and

You alone answer our prayers

Lord, I know You care for me.

Stay with me Lord, oh! Stay with me Lord, until You call me home.

Carry me Father, carry me home; I’m tired and need Your help.

Amen.

These words have inspired me to put music to them and I have learned to play the harmonica.  Where the sounds came from that match these words perfectly can only have come from a place that is not earth-bound.  I am no musician and nor am I a religious boffin … but somehow I have been led to create something beautiful for me to use to keep Him close to me at all times.   My prayer and hope is that you too find that comfort that will take you through the fires of hell on earth.