There is nothing to stop Karen, Argentine, 2
daughters, English teacher, not even a disease that sometimes paralyzes her
from feet to head. Karen has suffered from rheumatoid arthritis for forty years
and despite the pain it causes, a smile is always on her pretty face.
Brave, fighter, heavy rock lover, enthusiastic
traveler, she has not let the disease, which has taken away so many things,
take away her desire to live.
The disease has taken many things from her but she
prefers to focus on what she has and not on losses. In the few months that I
have known her, I have seen her suffer some attacks and even then she did not
lose her smile or good humor.
Karen is an example, not only for people who suffer
from any disease but especially for those of us who do not suffer from any and
do not appreciate the value of health.
Thank you Karen for sharing your story with me and for
being the way you are.
Karen, what is rheumatoid arthritis?
Well, arthritis is an autoimmune disease. That means the immune system, which normally
protects the body from foreign substances, attacks the body instead. The
disease is also idiopathic, which means that no exact cause is known. The
symptoms include joint stiffness, especially in the morning, pain, swelling, and
tenderness in the joints.
Does the disease have a cure?
Now it has a cure if the disease is detected within
the first year. But in my case, as I have had it for forty years, it´s not
reversible.
How old were you when you got
ill?
I was 12. It began when I was practising for a Sipalki exam. I was here in Córdoba, and I was practising with my sister because we had a Martial Arts exam. And suddenly I had a terrible pain in my shoulder and my parents thought that it was a bad movement due to the hard Martial Arts I was practising. But then, after months of studies, they discovered it was arthritis.
How did you feel about that
diagnosis?
At first… I was young, I was twelve years old as I
said. At first I did not understand what was happening, it was a question of the
pain this disease was causing because it was very painful. I could not walk or
if I could walk I could walk very slowly. I could not sleep well because it
hurt a lot… For me it was as if someone was stabbing a knife in my joints and it
was very very painful. When I moved that part of my body the pain calmed down
for some seconds and then it started again. Every time it was getting harder
and painful and more painful so I moved it again and again I was a relief but then it started again getting more painful
every time. It was just as if someone was stabbing a knife and revolving the
knife in my body, it was terrible. So I cried, I cried a lot and I suffered a
lot. I put creams, I put probably something hot there, but it just calmed down
for seconds or minutes and the pain started again. At first the doctor told my
parents that it was reversible and with a treatment I could be better but later
on when I was eighteen years old the doctors confessed that I was not going
to be better. On the contrary I was
going to get worse. That was a shock because they told me that I was going to twist
my joints day by day, year by year. So I imagined my future in a wheelchair. That
was a bad moment, yes.
Do you receive psychological
treatment?
They suggested it but I have never agreed with
psychologists.
Why?
I don´t know. It was a question of internalizing the disease
on my own and trying to do the best I
could with what I had. There was no solution… and a psychologist wouldn´t have
taken that pain from me. But I had to endure with that and accept it. It was hard but finally I accepted
the illness. And now it is just like a friend that sometimes gets angry with me.
She is sometimes in a bad mood. But likely
as the years passed by I understood that I think…well, today I have a terrible
pain but tomorrow I am going to feel better. So I sometimes cry because I get angry
with myself, but soon I understand that tomorrow or in a few days I will
recover.
Did you lose years of high school
because of the illness?
No, because I was a nerd so when I had an attack my
parents used to take me to Córdoba where the weather is better. It is drier
than Buenos Aires so I was here and I studied here. And my teachers knew about
the illness. In fact, I didn´t do Physical Education, for instance, and they
told me what I had to study so I came here and studied Language, History,
Biology, and the rest of the subjects. I took the exams when I came back to
Buenos Aires a month later or two months later. They did not put me absent. But well, I passed with the highest marks anyway. And,
even though I attended few days at school, yes, I got the best grades. When I was in my last year of high school, I carried the
national flag throughout the year. I was very proud of it.
Wonderful! Did you study at the
public school?
Yes, I studied at Colegio Nacional de Quilmes but in
those years it was very very strict. It
was tough, it was not easy to pass the subjects but I loved studying as always.
In what hospital did you receive
treatment and what treatment did you receive?
The first doctor was a cardiologist that said that it
was fever arthritis, that it was going to affect my heart, he was a Japanese
doctor. As he did not know what to do he sent me to La Plata Hospital and there
I met a doctor called Manzur, he was very young in those years, and he was
investigating my case. Now he is one of the greatest doctors in arthritis. At
first, they took me just like rat in a laboratory and they did not know what to
do either and they gave me corticosteroids. I went there for 4 or 5 years and then they told me
that they had discovered that 1 million children in Argentina had that disease.
One million?!
Yes, 1 million children and they did not know why. It
was believed that illness affected old people, not young people, that was
strange in my case and when they investigated they discovered that it could
happen to young children, too. And one doctor said that I had premature aging, yes, it was terrible. Well, I am talking about forty years ago, and
science has developed a lot in these years, but forty years ago medicine was
just developing. And one geriatric doctor gave me medicine for old people,
geriatric medicine. And he gave me drugs for sleeping, pills, and it was
worst because I was stupid all day and at night I moved in my bed like crazy. So
during the day I was doped and at night my mother told me that I was constantly
moving in the bed. They gave me this
famous pill, Valium, for sleeping. The doctor told me that it was a mental
problem I had, that the illness was only in my mind. Because they did not know what
to do. Sometimes they gave me these pills for sleeping, then corticosteroids, medicine for old people because I had a new illness. They discovered a
new illness and they called it polyarticular juvenile idiopathic arthritis. This type of arthritis can
affect the joints in the jaw and neck as well as those in the hands and feet.
This type is also more common in girls than in boys and more closely
resembles the adult form. The illness affected big articulations and small ones.
Because if it was arthritis it affected big articulations or small
articulations but in my case it attacked big as well as small ones, so the
doctors were confused. They did not know what to say, they did not know what to
do. If it had been fever arthritis, it could have been better because fever
arthritis could be treated. But it was not.
What is the collateral effect of
the medicine?
Well, I had taken corticosteroids for so many years. They
produce infections in my skin, sometimes when I got hurt in my skin it did not
heal so easily, producing ulcers and I had to put special creams in order to
prevent the ulcers. And apart from that, I missed melanin in my skin and I have
some kind of holes in the skin because of the lost of melanin. Now they are
better because I had stopped taking corticosteroids. I could not sunbathe because it was dangerous
because melanin protects the body from the ultraviolet rays. Another negative
effect is that I lost the appetite because corticosteroids sent a message to the hypothalamus and when they took them out, my body
did not receive that message anymore so I lost the sense of hunger.
So you could not sunbathe.
Of course because the outer layer in my skin was weak,
so it was dangerous to sunbathe. I had to be under the sun because it was good
for my bones, vitamin D, but on the other hand, I could sunbathe with factor 80
solar protector and not being under the sun from 1pm to 4pm because it was more
dangerous. But I had to sunbathe. The geriatrician doctor told my parents that probably I
was developing a man body because I had a lot of hair in face, in my arms, in
my legs, that probably I would become homosexual, I was 12 years old (she
laughs) and I was shocked. Of course my parents did not see the geriatrician
again. I like men too much.
It was terrible!
Oh, yes. And when I was eighteen my sister was
studying medicine at UBA University and she knew that doctor Barceló was an
expert in arthritis. This doctor had his surgery in Hospital de Clínicas downtown
and I went to that doctor since I was eighteen years old to 24 years old and
the Doctor Gibson, who was his assistant. In those years they tried different
treatments. At first, they gave me gold pills and after a few years my body
became used to that medicine, it became refractory. So they change into quinine.
My body reacted positively to quinine for a few years, but then again it did
not work anymore. So they started with methotrexate, it is a drug given to
people who suffers from leukemia in big dose. But I just took 3 pills a week
and felt better with that drug. But also I felt sick with it as if I had eaten 5 fried
eggs together. And then I got pregnant.
I was 26 years old so far, so I had to stop taking those pills, because it was
dangerous for pregnancy. So for eight months I did not take anything, so I
suffered a lot. So I tried alternative medicine with herbs such as the famous alocasia “oreja de elefante”. It was good
for calming down pain. My mother prepared tea with that herb and I felt much
better but I ended up in a private hospital with contractions for a whole day
and I almost lost my twins. I had 3 months pregnancy. The doctors were very
angry with me because I was almost aborting my daughters, they shouted at me
that I could not drink herbs. From that moment till my daughters were born, I
took Dubadilan to prevent an abortion. I suffered for five months. They allowed
me to take an aspirin if I had too much pain. When I had pain I stayed in bed.
I was taken care by my mother, I was not alone.
Did your illness affect your
teenage activities?
Yes, because as I said before when the illness started
I was practising Marcial Arts and I was also playing basketball once a week and
I played tennis. I was a very sporty girl. I wanted to do something connected
with sports when I was young. I also used to play the guitar. I went on playing
the guitar till my hands got twisted. Then I started doing yoga when I was
fourteen years old and I stopped doing yoga two years ago because doctors
forbade me to do yoga because I had atloaxial subluxation. It can be operated but
the operation is very risky.
What organs are more frequently
affected?
In my case it affected the liver and the kidney. That
is why doctors changed into biological hi-tech medicine because the illness was
affecting articulations as well as organs. And I have being injecting with this
biological medicine since 2009. The first biological medicine was Humira but I
did a very bad allergic reaction. So they changed into other biological
medicine called Enbrel. So far, so good. With this medicine I can have a relatively
normal life so I am very happy with the advances in medicine.
What is an attack?
It starts suddenly, in few hours you can´t move or it
is hard for you to move because every part in your body hurts. I always say it
even hurts my surname. And some joints get swollen and it is very painful. When
I have an attack, it occurs in 2 or 4 hours but it takes almost a week to
recover. The process of recovery is very slow. As I know when an attack is
starting I take different pills beforehand in order to reduce the pain. Sometimes
it is a hard attack and I stay in bed for days. But sometimes it is not so
hard. You never know to what extended the attack is going to be. Sometimes it
happened to me that I went to bed in perfect conditions and when I woke up I
could not move.
What do the families need to understand about the illness?
The only person in my family that could not accept my
illness was my father because he thought it was all in my mind. There are psychological
support for families because sometimes they don´t understand why you are in a
bad mood. But you are in a bad mood because you live with your illness, with
pain. Not now because with this biological medicine I am not in pain all the
time. Family members should understand patients with arthritis and help them.
For example, my daughters did not close the jars properly so when I lifted them
the jars felt to floor. But my daughters have always understood that I was a different
kind of mother. In a crisis they have always helped me taking care of me. They
always helped with the house chores, they put me creams on my articulations,
they calmed me down because I cried, the helped me to get to the bathroom at
night, they dressed me up, they prepared their own food, when I had an attack.
Sharon and Ayelen, my daughters, are the best.
What other cares should you take?
I don´t have to take colds, I should not do hard activities,
I don´t have to lift heavy weights, I need to have a nap every day, I must
sleep 8 hours a day, eat healthy food, I should not care about problems, I must
try to have a quiet life because this illness is much affected by emotions or
problems. If you get angry, you will probably have an attack. The doctor told
me that a woman had a big attack when she was told she was going to be a
grandmother. She was so happy that she suffered an attack. He suggested to try
to put imaginary oil on my body so problems or emotions will slide down.
Was it difficult to have the
babies?
Yes, it was hard. Doctors told me I could not have a
normal delivery because my hip could get separated and don´t become to its original
position. So I had to go to a caesarean section and they asked me to donate my placentas
to investigate and so I did. A few days after my daughters were born, I had a
big attack, I could not move because the doctor said the placentas acted as a
natural corticoid and when they took out the placentas, they took out the
natural corticoid. I could not feed my daughters because the corticoid I was
taking.
What piece of advice would you
give to people who have been recently diagnosed with arthritis?
I would tell them to go to a doctor immediately, a
specialist one who is doing research because they have a lot of new advances in
medicine. Now if a person is diagnosed recent arthritis, it can be reversed in
the first year. My doctor told me they are just at the door of changing it
completely. It is not my case because I have had this disease for forty years.
So there is hope. The doctor I go, Dr. Jorge Luis Velasco Zamora is at CER
(Centro de Enfermedades Reumáticas). He is with the latest news about arthritis.
The address is Av. Vicente López 1441, Quilmes, Buenos Aires province. The
doctor told me that the best treatment is like the three vertices in a
triangle: a proper medication, a psychological treatment and exercise. And I
suggest people should try alternative medicine like maca, sesame, chia, linen
and moringa to fortify the immune system. Take calcium to fortify the bones.
And do not put on weight. And take vitamin D once a month.
What is the best weather to live?
Doctors told me the best weather was a place without
too many barometrical variations, so I decided to move where I am living now,
in the mountains in Traslasierra, Córdoba. I feel much better here, the weather
is drier than in Buenos Aires and there are not tensions like in the big
cities, life is quieter. I live more relaxed here and I very happy.
It´s the illness inheritable?
No. But the doctors say that my grandchildren could
have the illness. But if this happens, the research will be very advanced at
that time and they will not suffer like me.
Can you have a normal life?
Yes, I try to have as a normal life as I can. I drive, I work, I walk, I do trekking in the mountains, I type, I write, I exercise, I cut the grass in a house, it has a big garden, I have an active sexual life… and I dance rock and roll, of course. I studied Astronomy at La Plata University, after that I did the English Training Course and I got my degree. Everything I do, I do it at my own pace. And I am happy.
Traslasierra, May 28th
2021
CER (Centro
de Enfermedades Reumatológicas)