Despite how it may appear, this site is
not just dedicated to the trials and tribulations of Klippel. My
intent, upon starting it, was to garner awareness and to document my
story with this condition, whichever way in which the tides may have
turned. A lot of my continual readers are used to reading about me in
the midst of some form of medical chaos, as the vast majority of my
life I have been.
These days, however, I have been
outpatient for approximately a month and a half and in some ways it
has been utter bliss and the reprieve in which I so desperately needed. However, my mind and body are not yet connected
in spirit, and I am working vigorously on that. Sometimes the smell of something
as menial as plastic will bring me back to a certain time in the
hospital, or I will have a nightmare in which I am being rushed back
in to the ER at 2:30 in the morning. Mentally, all of this has been
rather taxing despite being on antidepressants and receiving talk
therapy. Although, I have just really started up the talk therapy
again in recent times, so perhaps it is not fair of me to say that. My psychologist is on vacation this week so I will not have a chance to meet with her until the next one.
However, speaking in terms of my
Klippel, I attribute my current success as an outpatient to the
Sirolimus in which I have been taking. While it may give me
unpleasant facial and body acne in which I have never had prior, it
has certainly played a vital role in stabilizing my health. I am due
to write another “Sirolimus Diaries” entry soon, so if interested
please keep an eye out for that. As of current, please know that I
have not been this healthy (in terms of my Klippel) in quite a while
and am savoring the moment. I am trying to become reacquainted with
home life as I have a rather positive feeling I will be here quite
longer! Until two weeks prior, I actually left a hospital bag packed
with all of the essentials I would need in anticipation of another
infection creeping upon me when least expected. That bag, the same
old rusty one that has accompanied me on multitudes of inpatient
stays, lays about 5 feet away from me as I type this. It is empty,
and I am quite confident in leaving it that way, at least for now.
While I feel compelled to document my
struggles with Klippel, I also feel a deep responsibility to record
my successes as well. While each case of Klippel varies, perhaps it
will give some parents, patients, and specialists alike hope in times
of hardship.
Below are a few pictures of recent
times. May you be well, and if not, embrace the inner hope within to
stay strong and fight your battles. - Arianna
That is really inspiring. The process of healing is tricky because a lot of things can play into it, with us not really asking for anything. However, a huge part of it all is the spirit and the will to see things through and break new grounds in terms of what level of improvements one's self can possibly attain, amidst adversity. May you soldier on in your journey, and may you be armed with the best and most accessible medical coverage possible. All the best!
ReplyDeleteJason Hayes @ DECO Recovery Management