Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts

Tuesday, February 4, 2020

What I Want You to Know about Me

 There is something that is weighing very heavy on my shoulders and my heart.  People do not realize how sick I am because I always am upbeat (most the time) and positive.   BUT, I will see someone after I have been walking or talking for 3 or so minutes and they will greet me.  I am physically unable to greet them back.  I do not have the oxygen in my body to make that response. I will then be greeted again, my name used and the words enunciated as though they are talking to a fool.  With my limited amount of energy I try to use eye contact, face movement and hand movement explaining that I am unable to talk yet and could they wait a while.  No one gets it.   They either turn away in disgust or turn away assuming that I think I am too good to be lowering myself to greet them (and that is true because I have asked later on when I can speak).  My frustration levels hit an all-time high with me wanting to die because I cannot breathe enough air to scream.   And when I have been talking to someone when I have the energy and we start laughing, I lose all energy and cannot continue the conversation and often just fall asleep through sheer exhaustion – sometimes just blacking out and not knowing when the person even left.
I cannot look after my own personal hygiene, I cannot walk to the toilet unaided, I cannot do a thousand things that you take for granted.  I cannot go into shops, I can’t buy what I need or even want to use for my crafts.   Even writing – I write for 30 minutes and then stop and have to wait until the pain from my arms becomes bearable and then I can start typing again.
And still, people want me to take up their batons and run with them for the things they are passionate about.  Not once does someone thing – “Gee, I wonder if Di would like a cup of tea?”   or “How does she manage to wash her hair?”.
I still have a fucking good brain and I can still do a lot of things and say a lot of things in writing that others are afraid to say – but I need help.   I need help to hire someone to bed bath me and make me tea and change my linen and to pass me the things I am going to work on that day in bed.  
I want to die with my boots on but without YOUR help, this is not going to happen.   Why do people say they will help and they don’t?   Why do people no longer use their word as their honour?   Why does no one care now at this stage when I am still doing what I can with what I have but could do so much more with a little help?
Ever wondered what it is like not to be bathed or showered for a week?  Or to lie in a wet bed for a day? 
Ever wonder what it is like not to have a single doctor in the country who has ever heard of your disease and that there is a cure but I would have to go to the USA to Maryland for 11 months … where would the money come from?  The doctor is prepared to treat me for nothing.   But it is too late now because I cannot even get to the hospital without an ambulance, never mind thinking of going for a cure in another far off land.

I have so many wonderful ideas to change our world but alone, I can do nothing.   I really want to get these innocent prisoners out of jail – I really want a place where battered women can flee to – I really want to have a plan in place for when our rivers run with blood.  I really want to be able to provide food to the starving and that is already started in a small way and we eat from our garden.  But I can teach – I can show people how to improve their lives – I can mentor – I am a psychologist – I know the constitutional law – I can write, edit and proofread…And then publish for other people, not only for myself.  I can motivate, encourage and connect dots for people.   All my flaws and scars are what makes me a uniquely creative and beautiful human being.    I am afraid of nothing except suffering to breathe and to die that way.
I am a great supporter of paying it forward with random acts of kindness – and I am richly rewarded by our Maker who gives me the strength to continue to do His work.  But now He needs YOU, His angels to help this one.  

Tuesday, October 29, 2019

Taking Control over my Health .. it's going to be a ride ....

Sooooo, as my day stretches in front of me, this totally stoned out my tree am waiting for Sammy M Bella coming this morning for my 3 x week detox, And this afternoon I have Alison and Lynn Erasmus Van Vuuren coming to do Acudetox on me (they stick those thin needles into you). Sammy M Bella is going to help me shower and change into fresh clothes. Patrick has already dosed me with the black stuff and I am starting to feel rather ... let us say ... delayed. I use half the anti-nausea tablets I was using and I have only been on this road since Friday .... Oh, and I'm juicing it too.
When doctors hear hoofbeats they only think of horses ... they have forgotten that zebras also have hooves.  I am a zebra and I will not be shut up by uncaring doctors or an unhelpful medical review team at Discovery.   I have the right to the best medical care with the best doctors for my rare case.  No one has the right to humiliate and embarrass me because their egos are so big that they can't handle the fact that I know more about medicine than suits them.  Pulling them down from the trees is not a good idea because they talk amongst themselves and you will never get an appointment with that specialist for the next year.   What are we to do?  Shut up and put up with their shit when our premiums at Discovery are so high?  Or do we educate the rarediseases department at Discovery although they are never available to talk to.   God, I am here and don't know what I was saying or thinking when I started this so once I am no longer stoned, I hope I remember to come and read what I wrote and if I wrote shit, I hope you will forgive me ... my excuse?   I am very very very sstttttooooned

Friday, November 3, 2017

Small Dreams

Chronic illness is one of the most isolating experiences.  You become isolated because people just do not understand your reality.  They slowly move out of your life and get on with the lives that you used to be part of.  You feel left behind.  I am not lonely, but I am alone in this reality of mine.
People don’t understand me anymore – we talk past one another.  They have no idea of what my reality is like, but I remember what the reality of a healthy person is.  I hang my head in shame now that I remember my chronically ill grandmother and how little attention I paid to her.  She just could not leave her bed so did not take part in any family activities and would lie in a darkened room day after day.  Yes, I remember bathing her and sitting and talking to her as a young adult, all the while hoping that the visit could be over.   I understand now how isolated and neglected and starved of human company she was.    I have social media but in those days, there was no such thing.  How lonely she must have been.
Words cannot describe the horror of waking up sick every day and of being sick every minute of every day.  Some days are better than others.  Some days I can handle the pain but I get those days when I think I can’t take it anymore and just want to end it all. 
Miracles do happen and I am defying the odds to become part of the “normal” world again.  The verdict of “there is no cure” just refuses to sink into my brain to take me to a place of acceptance.  Every day I live by grace, minute by minute and some days hour by hour.  How I wish I could go to a park and swing like a child again, to walk on the sand picking up bits of driftwood and seaweed or to learn to fly a kite.  My dreams are no longer big dreams but rather dreams of normal things that I know will lift my spirits.  I know I won’t be able to walk on a beach again, but I could sit and watch the waves.  I know that I could be taken to a park and I know I could sit on a swing and soar through the air as though I have no care in the world and I know that I could be taught to fly a kite.  

But who will take me?  Who will teach me?  Who will hold my hand while I pursue these dreams of mine? 

Saturday, September 2, 2017

Article 2: Living With a Chronic Illness


The unknown also holds a promise that anything is possible.  Let go of your past life, think about what you want to do that you love to do, don’t think of the negatives in it – the negatives disappear once you doing what you love.  Anything is possible.  I was a people person – a human rights activist actually on the ground, doing the most hair raising things.   Now I have moved that activism onto social media and I am writing.  Writing is what I love to do.  If one person can be helped by reading my work, then the book was worth the time and effort put into it.  The greater the hardship of the journey to get to finding and doing what you love, the greater the possible outcome.
It is impossible to do more than one thing at a time.  People do not understand this of a chronically ill person.  We are already doing a lot of things just to stay conscious to what is going on in one’s body while at the same time trying to focus on more than one thing.   It drives us crazy.  Have some patience with us, please.
What the fuck is wrong with doctors?  Doctors are only worth the amount of respect they have for our souls.  The other day I heard a doctor tell a terminal cancer patient who had not eaten in 10 days, to go home and cut down on her morphine dosage.  Why?  What kind of doctoring is that?  He cared nothing for her as a soul or even as another human being.
People with cancer and life threatening diseases experience intense feelings of isolation.  This disconnectedness from society can shrivel a person’s will to live.  So if you can, find one of us to visit or to phone now and again.  We are not asking much.
There is a culture of “deal with your pain “rather than become dependent on pain meds amongst many doctors.   Why does one have to suffer if there is something that can help us?  Who gives a shit when we are balancing on the rail between life and death if we become dependent on it?

My own reality of my ‘appalling’ illness is very different to that which others perceive.  I call it appalling “because what is wrong with me is diagnosed 1 in 10 million.  That does not make me special.  It does not make the doctor sit up and think “mmm … here is a challenge for me”.   It makes me a problem with a capital P. 

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.