Actually, I just woke up one day ....
Showing posts with label rare and chronic disease. Show all posts
Showing posts with label rare and chronic disease. Show all posts
Tuesday, October 29, 2019
Tuesday, October 31, 2017
Patient Patience or Participating Patient
Most people see their doctor and do exactly what they are told to do. They walk away after a five-minute consultation with a prescription and then they follow the doctor's orders. These patients leave their health and their lives in the doctor’s hands, when in fact he has hundreds of 5-minute patients. This kind of behaviour from a patient is fine if you have bronchitis, the flu or a migraine headache or any other minor ailment that requires no thought or relationship between the doctor and patient.
I am not one of those patients. I am a participating patient and discuss the treatment, the appropriateness of it, the side effects and the long-term prognosis. I have had to become a participating patient because I have a rare disease that is diagnosed only once in every ten million people. Expecting a doctor to know about my condition is asking the impossible so I do the research, I listen to my body, I suggest the treatment regime and I take control of my own body and my own health. I will never leave a doctor to treat me according to his limited knowledge of PID, SID or the rare kind of leukaemia I have. If I had done that, I would have been dead long ago.
I do the research. I belong to a USA research group run by specialists via the internet by inserting my blood results into their database, they answer any questions and also discuss alternative treatments. I, not the doctor, make the decisions on how I am going to stay alive for as long as possible with the least amount of discomfort. Strangely enough, doctors actually sit back and listen to me and give me what I need because I am so much more well-informed than they are. However, not every doctor would be willing to accommodate a participating patient because it dents their egos and makes them feel inadequate. It is imperative to find a doctor who will have the humility to know that he does not know it all and who is prepared to have a relationship with you – a doctor who has a vested interest in you as a person and not in the money you are paying to see him.
Monday, June 26, 2017
It is my Own Fault ... an awakening !
Without
fail, every chronically ill person is asked “But you don’t look sick” and every
cancer patient universally knows they have cancer before the diagnosis. I seem to have filled my head with inconsequential
things. Is sick supposed to look like these downcast people begging at the
robots or walk around with a sour face all day.
It is those who are sick that really live and those who have health,
forget to live.
People don’t
like to hear negative things and most want to only view the good things like
what restaurants, coffee shops and general good pics of braai’s and
weddings. Who would want to see what it
is really like for thousands of people who have cancer or another misunderstood,
little-known about rare disease with no cure?
It makes sense that these rare diseases are called orphan diseases by
the medical profession. No one will fund
research for a disease that affects only 1 in a million. We just become the cadavers that will have
autopsies to see if that adds anything to the science of medicine. But despite this all, the only outlet I have
to communicate with the outside world is through social media.
I had an awakening when I realized that it is
my own fault that no one understands why I am not well.
It is because I fake being well so well that I could win an Oscar. I fake being well so that I cover up a
shameful illness – shameful because it is so rare that only 1 in 10 million
have it and no one knows anything about it. Discovery told me that out of their
3 million clients, I am the only one with this dreaded disease. I know
more about it because I am a participating patient. I do not just lie there being a patient and
allowing the doctor to shrug his shoulders or send me off with a prescription
and telling me that he will pray for me.
Every event, whether it is being pushed in a wheelchair (which I call my
wheelbarrow) through Woolworths food market, or going out to an outdoor coffee
shop where there won’t be many people so I don’t have to wear a mask, or to
visit my mother but before I do I have to make sure I do nothing else
beforehand so that I don’t turn that one visit into a vomiting sick event. I also want to be out there in the coffee
shops, out there in the sunshine mixing with friends and associates. I too want to be able to plan something,
knowing that I will be well enough on that day to do whatever I have
planned. I too want to wake up just one
day feeling good. Just one day! I fight every day – to just get through the
day, sometimes taking it moment to moment and other times when I am lucky
taking it one hour at a time. There are
some things that make it even harder to bear living with a condition that is
life-threatening:
·
A
cold for you is a nuisance. A cold for
me is life-threatening
·
Every
infection I get I wonder if this is the one that will kill me
·
People
tell me “But you look so good, you can’t be ill” as though I am making a
mountain of a molehill. Don’t people
know what steroids do to one’s body? We
are no longer skinny and slim but the product of Mr Michelin and Mrs Oros
·
I
can’t plan anything in advance because I don’t know how ill I will feel in an
hour from now let alone in a week’s time so friends forget about me – the person
me and not the social media me.
·
I
have very few people I see because the circle of friends moved on and left me
behind
·
Every
moment I am in the company of someone else I put on a show of being normal that
could easily win me an Oscar Nomination
·
No
one knows that my every word, my every action and sometimes my thoughts drain
me of life-giving energy
·
I
have spent more time in hospital over the last 7 years than I have spent at
home
·
My
body has changed so much that I do not recognise myself. My hair went grey overnight and a vertical
hernia down my abdomen makes me look 12 months pregnant. So other people see me as a fat, grey-haired
old woman when inside of me the fire of living still burns bright. My body no longer fits my spirit
·
I
feel guilty because my mother at 84 looks after me when I get bad. It should be the other way around.
·
I
am so tired of pretending I am well that I am withdrawing into myself and
becoming a hermit. I live alone inside
my head and what goes on in my head I share on FB or I blog.
·
I
am tired of people telling me to get well soon – I want to scream at them and
tell them I will never get well but I don’t.
They mean well.
·
I
am tired of doctors that don’t care – who brush me off with a prescription for
the new symptom I have. I want a
physician who is interested in this rare disease. I have been everywhere in
this country and we don’t even have an immunologist.
·
I
want people to know that I have overwhelming fatigue – not just tired, but
overwhelming that sometimes it takes too much energy to talk or even to
breathe.
·
One
reason I write about my illness is because so many others are in
life-threatening conditions and they need a buddy too; so I run support groups
for others so they don’t feel like they are paddling up shit creek without a
paddle – that there is someone in the boat with them.
·
I
see a world that needs love – a reflection of me.
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