My 'Normal' Life ~And Then~

Three months have passed since I started note.
The first article I wrote was this one. ↓

This article,
Koredemo-haha-san
even introduced twice. ↓

And, Miiko-san
recommended and supported me.

Koredemo-haha-san,
Miiko-san,
thank you so much, truly. 🍀

The words 'You are not alone' are
very encouraging and make me very happy.
Thank you so much, truly.

And,
this time,
I would like to write a little
about my current situation
three months after that first post.

First of all,
my symptoms began about 25 years ago,
and even at the hospital,
I was constantly told
'there is no problem,'
so I spent years without knowing the cause,
but five years ago, I was finally diagnosed with
a rare intractable disease designated as a specified intractable disease,
an autoinflammatory disease.
Even now,
every day,
along with a low-grade fever, headache, and malaise,
I have joint pain, abdominal pain, chest pain, etc.,
accompanied by body pain.
And, once a month, I have an attack
where a high fever of around 40°C
continues for about a week.
However,
by going to the hospital,
taking medicine every day,
and getting an injection once a month,
my symptoms are
lighter than when I was not receiving treatment.
When the cause was unknown,
I was filled with anxiety,
but just being diagnosed
and being able to receive treatment
to prevent attacks and complications
has been a huge relief
mentally.
For now,
it is said that this disease cannot be completely cured,
but research is progressing,
and year by year, through support groups and my attending physician,
information is increasing.

And,
five years ago,
a new, recurring mysterious symptom began to appear.
It is a symptom that makes walking difficult,
and when the symptoms are strong,
I cannot even lift my body.

Since five years ago,
I have been seen by doctors in various departments,
but no diagnosis was made,
and the only response I received was
'I am sorry I cannot give you a diagnosis.'

When I started note,
I was still in a state where I didn't know anything.
At that time, the symptoms were strong,
and it was hard to stay awake for long periods,
but there has been a major development in these three months.

During these three months,
my attending physician for the autoinflammatory disease
wrote referral letters
and coordinated with others,
so I was seen by
various hospitals
and various doctors.

At first, as expected,
the answer was the same everywhere.
Sometimes there were painful words.

However,
there were also doctors,
including my attending physician,
who faced me with dedication.
My attending physician coordinated with them,
and doctors at the university hospital formed a team,
and last month,
they arrived at a diagnosis.

It is still
at the stage of 'Could it be this?',
but I have started taking medicine as a trial
and am currently monitoring the progress.

This disease also
seems to be a disease that has only recently been understood,
and it is said that even many doctors
do not even know the name of the disease.
Detailed information such as treatment methods
is not yet known,
and it is said to be at a stage where research is currently underway.
Even so,
having a diagnosis
has made me feel at ease.

Both this current disease
and the disease I was diagnosed with five years ago
were diagnosed thanks to medical progress.
And, by chance,
I was able to meet good doctors,
which led to the diagnosis.

It seems that most people suffering from the same disease
as the one I was diagnosed with five years ago
took many years to get a diagnosis.
Some people even took over 35 years.
I think there are many people
who are still suffering without a diagnosis
for the same disease or other diseases.
I hope that for everyone,
the day will come soon when your anxiety clears up.

I think many people,
including yourselves and those around you,
are carrying diseases and various anxieties.
I hope that everyone

has a time or place
where you can be
a little more
calm,
feel at ease,
smile,
and spend enjoyable time.
I hope that everyone

can live peacefully
while also valuing
resting your heart
in a place where you feel comfortable,
even if just a little.

I also hope that I can
gently be there for others
and tell them,
"You are not alone."
I truly think so.

Thank you very much
for reading until the end.

May warmth and happiness visit you all🍀