Because I'm Happy

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

pains simultaneously. Within this particular post, there is a message in which I would very much so like to relay – perhaps this one is more geared towards Klippel Parents and caretakers alike...but I believe Klippel patients will relate to it, too! Nonetheless, I feel it is an important one to extend on here to those of you who so graciously read this blog on a continual basis (and for that, I would like to send my utmost and sincerest gratitude).

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