Hello everyone! I apologize as it has
been quite a bit since I have posted an ample body of writing on
here... Truth is, I have been busy recuperating from my last surgery
along with enduring a harsh bout of influenza. Fortunately for me,
the influenza hit a few days following the surgery so I was not
forced to deal with the two extreme
The vast majority of my posts on here
dole out the difficulties in which my particular case of Klippel has
caused me, whether that is in a physical or emotional regard. A lot
of times, I think about this blog and the message in which I want it
to relay to the KT Community/Vascular Anomalies communities as a
whole... And, is that message consistent with the work in which I am
doing on here? That is where things get a tad bit more complex...
Many a time, I write about medical difficulties in which I am
experiencing; writing is absolutely cathartic for me. I have also
dedicated a great deal of posts to issues surrounding the disarray of
my mental state (depression, OCD, PSTD). Please do not misunderstand
me, for I do not regret writing those posts by any means whatsoever.
In fact, I admire how raw they were in nature as they were not the
easiest to share (given that many who read this blog are close
friends and family of mine). What I do regret, however, is the lack
of positivity in which I've included in this blog since it's
beginning. True, the vast majority of the time since I have been
writing this particular blog has been during times of extreme
hardship, whether I was a septic inpatient or at home feeling
suicidal. Yet, there have been good times and I believe it is just as
vital to share those experiences with readers as opposed to primarily
ones in which I'm in the hospital or feeling unbelievably depressed.
Obstacles, of course, are not exclusive
to Klippel patients by any means whatsoever. Our obstacles may differ
in nature from those of the “normal” person, but the irrefutable
truth is everyone walking this earth's surface has them. While our
plight is unique, I do not believe it to be impossible in terms of
finding happiness and even reveling within it. For those with
depression (like myself), happiness can indeed be an ongoing
battle...but it is not an impossible one despite all in which we may
endure on a constant basis.
What I do not want is for a parent of a
Klippel newborn to find this blog page and to feel discouraged by my
words – I do not want them to think that their child is bound to be
an emotional wreck who will endure frequent bouts of hospitalization
along with chronic pain. While this has been a part of my journey, it
does not necessarily mean it will be a part of your childs as each
case of Klippel is indeed, well, different. Not to mention, there
have been some major breakthroughs within the past several years
surrounding the physical component of this condition... A chemo
medication entitled Sirolimus is actually making a momentous
difference within a number of Klippel patients lives for the better!
Who ever would have thought that a chemo medication could have such a
wonderfully positive impact on such complex cases of vascular
anomalies? I certainly would not have thunk it, but fortunately for
many of us, the incredibly adept Dr. Adams did! Not to
mention, technology has improved drastically since the time in which
I was a baby myself. My interventional radiologist at Children's is
now able to perform life altering procedures for me and others in regards to my
Klippel that were non-existent all of a mere ten years ago...
As for the psychological component,
progress is being made here as well. The team at Cincinatti
Children's has just added a psychologist as part of their Vascular
Anomalies staff for the first time ever (a huge round of applause to
them). Children's Hospital Boston will hopefully be adding one soon
(I will keep you all updated on that as I become more aware). Not to
mention, mental health needs of chronically ill patients are becoming
more recognized throughout the globe. Several people –
professionals and patients alike – are becoming more aware that
treating the mental part of a chronic illness is just as vital as
treating the physical component.
So, as I was saying prior, I do have
good times, although they may sometimes get lost in translation due
to the absurd amount of chaos in which this condition throws at me!
What you don't see, however, is how hard I was laughing before a
surgery, or the ocean-wide smile plastered on my face the minute a
song I like comes on the radio. Right now, I do consider myself to be
in a great place – physically and, for the most part, mentally too!
That does not mean everything is perfect, but rather that I am
embracing the good in which my life has provided me with at this
moment in time. I am back on the antidepressant I had to stop
abruptly due to the Sirolimus (as they interacted with one another)
and am in a much happier place overall. I am practicing Mindfulness a
great deal as well, too. In sum, life is good and I am greatly
anticipating the upcoming months!
There is hope, especially in terms of
this condition. With Klippel, I do not believe that hope breeds
eternal misery. With all that is happening in terms of research and
technique, quite the opposite, actually!
The way I see it, we are all here for a
speck of time... We do not know when our time on Earth will be over,
and tomorrow is not guaranteed. So with that said, be kind to people.
Be kind to yourself. Appreciate what is surrounding you at any given
moment – practice gratitude. Realize that the clock is ticking and
that every moment that passes is one in which you will not get back.
As grim as this may sound, the bleak reality is that we will all be 6
feet under one day. Our time here is so short and if we can embrace
the obstacles in which life throws at us, we can than learn from them
and continue on as wiser souls.
Lots of love,
Arianna
