Appointment at Children's Hospital Boston with Quick Video

Here is a brief video I shot the other day while making my way up to the IR clinic at Children's the other day with Dr. Alomari. Being at the hospital (for the first time since my month long June admission) ignited a lot of vile emotions for me; despite knowing I was safe and my condition stable, I could not stop shaking throughout the several hours I was there. I will be updating more soon about the appointment and what is to come for me in the near future! Hope you all are well. - Arianna

Glimpses of Happiness

I am so accustomed to writing about my difficulties on here that I quite often forget  to post something uplifting – which, from my own personal standpoint, can be somewhat easier said than done when in the midst of internal frustration; at times, these internal frustrations seem as wide and unwavering as the ocean itself...

I am not merely a young woman who everlastingly wanders around aimlessly engulfed in a dark, enigmatic, down-trodden haze- that is not the kind of person in which I envision myself as. For the past 10 years or so, I consciously concealed the vast majority of my emotions – deeming them to be innocuous in nature, and that (in vain) led to an overflowing affectionate burden these past few years.

I was, in retrospect, a balloon simply waiting to burst... it was not hard for my tight-circle to envision a mental decline at the time due to years of harsh experiences battling Klippel in addition to having an overly-sensitive nature in terms of acquiring “perfection.” From my acquired knowledge in the psychological field, my deep-rooted psychological issues stem from a cocktail of environmental circumstances and genes. As a dear and undeniably competent Psych. Professional once told me, “not everyone who has chronic illness has a mental illness, too.” These are words in which I would like patients and parents alike to keep in mind. I happen to have Klippel-Trenaunay Syndrome and Borderline Personality Disorder (the latter falls under mental illness for those who may not be aware). While dealing with the emotional residue of my life thus far these past several years, I have experienced some of my worst demons in terms of Klippel and its vile symptoms. Life is not particularly easy, but on a grand-scheme world perspective, it is not all too bad, either. I am sitting here, in the comfort of my bed, wearing cozy slippers and eating freshly-picked Raspberries while the sun hides beneath the evening sky, preparing itself for yet another heat-ladden summer day. Gazing around my room, I see a momentous amount of pictures – ones that remind me of how blessed I am in terms of the delightfully radiant, colourful people I have met along my journeys and the places I have been fortunate enough to visit by some minute granule of fortune.

That is not to deny or downplay my problems, as that is in no way my intention. Many who have kept up with me in personal life, on here, or through some other social-networking platform know I have been rather vocal about my plight with Klippel. Whether it's been combating Septicemia, Cellulitis, Thrombophlebitis, a mere superficial clot, relentless chronic pain, countless surgeries, it feels as though I have circled the Klippel drain a multitude of times. The sentence above, however, merely details the physically apparent burdens of my life thus far. I have also flirted with deep periods of depression, OCD, and suicidal thoughts (behavior too, as noted in my posts prior). And, at this very moment, I am experiencing a bit of a lousy (and rather painful) bout with my Klippel that will undoubtedly lead to more surgery this upcoming Fall season.

Yet, with the great assistance of those around me (rather that be professionals, family, or friends), I continue to prevail in life – in the sense that I am still living it! Not only that, though, I live it to various emotional extents – sometimes, perhaps when I am least expecting it, I feel as though I am somewhat naturally high on life (admittedly those moments do not come nearly as often as I would like). Perhaps my fondest memory since my last hospitalization (I was released at the end of June from Children's Hospital Boston after approximately 27 days inpatient) is that of watching the Sunset while driving my Dad's 1980 gold-vintage Trans Am at a rapid pace (music and speakers in tow) while grazing the landscape of the tedious 93 highway... I love that little things like those can still ignite a light so rampant within me – and at those moments, I feel as though I am on top of the world, truly... It is as though I can see my problems and hindrances for what they are in the grand-scheme of my life, and in that time period I find my own volition to not only keep living this life – wherever it may take me - bad or good, but to honor it.

Below are pictures from July and this month. You would be rather surprised how emotionally vulnerable I feel in a multitude of these pictures, despite my put-together outward appearance. In someways, it's a facade that I must maintain (while amongst strangers) in order to delve back into society until I am fully comfortable around others once again... My mom is rather good at inspiring me to get out and about despite pain and mental agony. It is my job, however, to determine my overall symptoms on that given day and examine whether it is in my overall best interest to go out or not.

This was supposedly to strictly be a picture post – with perhaps a couple of fully-constructed sentences as narration. Clearly it did not turn out that way! I am writing this in the middle of the night, so hopefully this piece of “writing” is coherent in some way or another... = X Anyhow, though, I hope you all have a lovely day and would like to thank you sincerely for reading what I have to write... I read each and every comment posted here and many of them have touched me profoundly... In terms of social media, I am a dedicated Facebook user and can be found under the username of Arianna Helena.

Until next time,

Arianna

Underneath Your Clothes (Down Under)

I am rather insecure about my writing these days, which is a major contributing factor as to why I do not post on here nearly as much as I previously did in the past. Due to a series of unfortunate events pertaining to my Klippel, I have been out of school for some time and feel rather rusty/insecure in terms of my writing capabilities (or lack thereof). However, I am far from done with this particular blog; there is still so much in which I want to share with those who are willing to read my (sometimes) utterly ridiculous drivel... ( ;

Within this particular post, I am going to get rather personal in terms of a particular subject matter. While the vast majority of my posts are rather revealing on an emotional level, this one is going to take things up a notch... It's a subject matter in which I have thought long and hard about prior to composing this article of writing; I have been debating whether or not to write about this for some time now because it is a rather risque topic. However, after much consideration, I have decided to share some of my most intimate feelings in regards to a very private matter. Hopefully I do not offend anyone with this particular subject, as my intention is not to be too salacious or risque in any manner whatsoever. However, as a 23-year-old woman, I want to share my particular experiences in regards to having Klippel and the way in which my sex life (or lack of one) has been impacted by this condition.

When I was in 9^th grade, I started to develop this hybrid of miniscule and incredibly large painful vascular growths on the outside of my buttock...they were categorized as being a part of the wart family by my Doctors. Not only were they on the outside of my buttock, but they were growing rampantly within the inside of my buttock area as well. I could not go swimming without the chlorine stinging these growths, nor could I sit comfortably. However, I did my best to hide this pain as I felt a sense of shame in regards to the anomalies growing in such a private area. As asinine as this may sound, I almost felt as though I was less than everyone else...as though these growths somehow made me less adequate than other women by default... In essence, I allowed them to define me.

One day, while working, an older boy I was rather fond of at the time did something completely inappropriate. I was in the back room of my working area with my back turned when suddenly I felt his finger slip down the rear of my pants. I was left speechless and mortified...he was several years older than me, and someone I considered a dear friend (if not crush). Instead of telling someone about what had happened, though, an immediate sense of shame fell upon me. That area of my body, the one in which he had so disgustingly violated, was filled with those awkward wart family growths. Rather than telling someone what he did (which I obviously should have), I kept the tremendous violation to myself until just about a year or two ago. All I could think of at that particular time was “will he see my differently now? Will he find me less attractive? Certainly he will never look at me the same way.” I was so riddled with insecurity, but I was not ready to talk to anyone about my own shame and what had occurred with that man. I saw him again following the event, (a slew of times, actually) and an immediate sense of shame would fall upon me when in his presence. I felt like I was low man on the totem poll because of the anomalies in which he felt that day he committed the inappropriate act. They were, at that time, my best kept secret; now, however, it was out in the open and I had no idea who he may or may not tell... and that in itself petrified me immensely.

Fast forward about a year, and a boy I was in lust with was courting me in high school. However, I rejected all his advances relentlessly, fearing that if he ever found out what was underneath my pants, he would reject me instantaneously. I was rather fond of him, and I often wonder what we could have been had I not rejected all of his advances. At that point in time, I was not comfortable showing my leg by any means, and I was able to conceal it under jeans and various other pants quite well. Since that time, my Klippel area has grown exponentially larger and I am no longer able to hide it like I used to be able to. However, for quite some time now, I have been pushing guys away as I am not secure with my body in terms of “down there.” During my sophomore year of college, I was sexually abused by another man in which I was (deceivingly so) quite fond of...I was so deceived by his manipulation, aside from the fact that I was in undeniable lust with him. At that point in time, I was in between surgeries and feeling so incredibly lost. Upon speaking online one evening, he offered to come pick me up and we would walk around Boston together and just talk. Next thing I know, I was in his basement and he was on top of me ripping my clothes off as I tried to reject his advances. Luckily I was able to stop him before he went all the way and demanded he take me home immediately. After the incident, I felt like an empty shell...how could I have been so incredibly naive? Where had my senses gone? Years of being in the hospital had stunted me socially, and I was a rather easy target for men like that as I was so vulnerable...
After he violated me, the shame in which I felt was rather unbearable... I was one of many notches on his belt, and surely I was not like the other girls in college he had laid hands on. Rather than feeling these tempestuous feelings of shame in regards to my body, however, I should have reported him. I was so embarrassed and dumbfounded, however, that I did not have the courage to report him.

I have had short lived romances, but I have eventually ended all of them because I am frightened of the intimacy that might eventually occur if I were to fall in love...perhaps that does not make much sense so I will do my best to explain... in terms of sex, I am not a one night stand girl. I never have been, nor will I ever be. My body rejects its own bacteria, and the thought of another person's germs entering my body is absolutely petrifying to me. I can only imagine the infections that may occur...

However, I believe that when the right person comes along, it will be worth the risk. It took me quite a while to realize this, but my “shortcomings” in such a private area do not make me less of a woman; they make me even more utterly unique as an individual! The right person will not only accept this, but be empathetic in regards to my insecurities. I have met and conversed with many Klippel people who are happily married or in relationships that have overcome the very shame in which I used to (and sometime still do) feel. The right person makes all of the difference, and there is no shame in having anatomy that differs from that of a “normal” person.

My growths grow back every couple of years or so, and at this point there are some in which I need to have operated on. My current situation with these growths have inspired me to write this particular piece of writing, as they bring back a great deal of not so fond memories.

That is really all in which I have to say right now in regards to this subject; as I still struggle to come into my own, I have to constantly remind myself that my anomalies do not define me! Yes, they are a part of me, but they do not equate to me as a whole. The right person will see that, and in the meantime I am working on myself so I can be the best version of myself possible at this point in my life.

Until next time,

Arianna

Cloves Awareness Day! Watch Dr. Alomari Speak on Discovery...

Hi everyone! I know I have not written as frequently as I have in the past, but I promise you I am working on some pieces in which I will be posting soon. Some of them are rather intimate in nature, but I believe in garnering awareness and hopefully helping others to learn from my own mistakes.

In the meantime, though, today is CloveS Awareness Day! As you are aware, I was born with a congenital condition entitled Klippel Trenaunay Syndrome. A lot of the times, the symptoms overlap with that of Cloves Syndrome. Today is Cloves Syndrome Awareness Day! Please educate yourself about the condition by going to http://www.clovessyndrome.org/index.cfm or checking out the CLOVEs Syndrome Community Facebook page. I have had the pleasure of meeting some of these patients in the past and they are some of the kindest, most resilient people you will ever come across and inspire me immensely. Please spread the awareness! 

Below is a video of my interventional radiologist, Dr. Alomari of Children's Hospital Boston, speaking about the process of discovering Cloves and establishing it as a condition in the world of medicine. I have worked with this particular Dr. a multitude of times and he is, simply put, sensational in every aspect. 

Until next time, 

Ari