A Little too Hellish

"But I didn't really mind because I knew that it takes getting everything you ever wanted, and then losing it to know what true freedom is."

You can like my Professional Facebook Page HERE.

Confessions

I was hospitalized this past week for a Cellulitis infection. Although, I do not feel as though I can call it that accurately without adding there was some controversy as to what it actually was from the Klippel expert himself, Dr. Fishman.

He will tell you he “simply doesn't know” in terms of whether or not it was a Klippel valve bleeding into another nor an infection. All I know is that I was on the phone with the VAC Clinic Friday with a dear VAC nurse I have known for quite some time now. She told me if it started to spread (the legion) or (got worse) than I could page the surgeon on call or come in. Unfortunately, things progressed in an unfavorable manner and the red, aching legions spread rampantly Friday night. I asked every person I met in the emergency room that night whether or not they were associated with Dr. Fishman and if they were, whether or not they deemed this an infection worthy of antibiotics. None of them hesitated in saying yes, we need you admitted and to treat this “infection.”

I escaped the hospital scene Christmas Eve and was elated to leave the downtrodden venue. There was one goodbye I did not say upon leaving though, it was too hard and I could not submit myself to it right then at an emotional level.

While there, I met a girl who was a Klippel Patient struggling for her life. We had contact prior, but this was our first time having physical contact. She still is inpatient, actually, and tells me she will never be released... One of my least favorite nurses I've ever had would not allow me to go visit my ailing friend a mere three floors beneath mine. Generally, I respect nurses and their word and would not forbid it. I explained to her the urgency of the situation and still, she resisted understanding my plight in a seemingly spiteful manner. She kept saying there was a person above her in the system she had to ask, as though she were referring to some vague deity... Nurses prior to her and nurses after her would instantaneously respond yes when I would ask to visit the ICU to see my sickly friend, but this one was different... Perhaps she lacked emotional decorum so vital to someone in her profession that I should feel bad for her... I hope to never have her again, she was uncouth in her actions and lacked sympathy.

I kept asking her, and finally she told me that the answer was no, I was to forget about it. I phoned my friend and spoke with her sister and told her what my nurse had said. Still, that would not be enough to contain me. Well, this nurse had 3 or 4 patients to deal with simultaneously and not enough time nor resources to keep me on lock-down. So, I snuck down to ICU to see my friend where I was greeted by my friend's ICU nurse that day. She was so kind that I had to disclose to her what me being there in that moment really entailed; lies, sneaking off my floor, and a seemingly spiteful nurse who would probably kill me if she found out where I was. 

I prepared to get a good verbal lashing in return, but the opposite happened, much to my surprise. “Thank you,” her nurse said. “Thank you for being here. She got so excited when she found out you were coming.” We shared a smile and she helped me conjecture a plan in case I were to be caught by my nurse; I could not believe the lengths she would go to in order to help me see my friend! Her heart was certainly in the right place, and she knew that treating my friend did not just need to happen in a medicinal manner... That's what separates a nurse from a good nurse, though, and I am proud that I did not let my vile nurse that day hinder my efforts. I never got caught, by the way. ( = Normally I would not brag about rule breaking but this is indeed an exception to the rule!

She slipped me into the plastic yellow protective gear one must wear while visiting a friend who is on precautions with outsiders. I was well-acquainted with this gear as usually I was the one on contact precautions. I gladly slipped into the yellow suit, mask, and gloves for a chance to see my friend yet again. She was unable to move, and her breathing was as unsteady as could be. In between breathes, she managed to speak her depression to me. She told me that “she was planning her own funeral” and burst into an explosion of tears. Where words failed, my hand didn't. I immediately reached out my hand for hers, and latched on tight. I don't know if there is much else in which I am willing to share of that moment...but damn, at that point you realize there is more at play here in life; there is more than that dress you want but can't afford, than the number of tiles on the ceiling, than how many pounds you lost in the weeks prior... I have had that realization prior, but sometimes the feeling wears off and one is reminded again...

Not many people will understand it, and seeing someone so close to their end demise (for me) is much different than coming back from those times where I almost died. Perhaps because I am at a more alert level...

For any reading who question the validity of this story, I can easily tell you the patient's name and where to find her/her family online but I won't. The Doctor's at Children's would know that at the very least I am speaking of a real patient for I spoke/wrote to them about her while inpatient and they are the ones treating her. I was, however, met with blank stares and non-relies as they are under confidentiality when I tried to ask what more they could do for her. She is a very difficult case for them right now. And, of course, the nurses reading it would know what happened. I am not worried about the validity of my story, though, as much as I am for the patient's well-being. Notice how I emit details regarding people's appearance...for my goal is not to cast trouble or assign blame upon anyone. Her fate looks bleak and if there is a higher power, I call on him, her, it to heal her.

These are my confessions, for now. And I'm not sorry. I would do it all over again, for sometimes breaking the rules means being a better human-being and those dictating them simply cannot empathize with that.

I'm home, albeit in a ton of pain physically and emotionally. I feel so trapped, which is why I write. When I write, I have a chance to tell my truth, and perhaps it can help people to understand me better. I still believe that some of the best stories, though, are the ones untold...or the ones that are happening between the lines.

In case you have not yet come to figure this out, this blog is greatly uneven in content... I write very little about Klippel itself and more about the emotional journey it has led me on. KissesforKTS is more than just about garnering awareness of Klippel itself, but all of the components that come attached with it....

I will post some pictures of the hospitalization in my next post.

LOVE to you all,

Ari

A Bucket Full of Sorrow

Hello everyone! I have been feeling rather glum as of lately, partly because I struggle with mental illness and the other reasoning being my Klippel. I do not feel ready to undergo a surgery of the debulking magnitude in January, but I know it is more than likely a great leap forward for me as opposed to a step back... whenever I feel pessimistic about the surgery, I remember that the benefits may greatly outweigh any risks.

One of the issues I have been dealing with lately is utter fatigue – my body is so tired, constantly, which can be attributed to numerous circumstantial things I have happening within my life. A great deal of my friends no longer live in the area, and that in itself can leave my feeling rather lonesome – but I am doing my best to get on despite the constant loneliness in which I often feel.

As far as dating, I am not doing much of that right now as my primary focus needs to be on my own well-being prior to surgery. That may sound rather selfish, but it is the reality of my life at this point in time. Still, I must acknowledge that I do have a multitude of great friends in my life – many of whom I have met through the Vascular Anomalies community – who help to keep my spirits up. I only wish they lived closer!

If you are on Facebook and would like to join my public FB page (Arianna Faro- A Limp At A Time -an extension of this blog) please feel free to do so and find the page by clicking HERE. Much like this blog, I talk about issues such as Klippel, Chronic Illness in general, and mental illness. It also gives a tiny glimpse into my personal life – as well as a large glimpse into my life with Klippel.

Hope you all are well!

Ari

Welcome to The Holidays

Hi there, everyone!
It's that time of year again, isn't it?
Only I cannot remember even a mere speck of time from this season last year - I was inpatient at the hospital. This year I am home - which means I am free- depending upon how you interpret that word. Things around me have been crumbling in terms of my foot and some other lovely Klippel areas.

I am due to get debulked on January 26th.

So, while being home for the holidays is a sweet desert of the finest taste, it comes with some restraints. I do not want to get debulked - but it is time to get the deed done. I will be in the most capable of hands, Dr. Spencer of the Vascular Anomalies Team. If you have ever met her, then you know there is no other way to describe her than, well, fierce as hell. And yes, I mean that in the best way possible.

Oh and guess what? I have a niece - my first ever! - due this May. If that is not motivation to get the surgery done and over with, I don't know what is. Talk soon! - AH

"Hold On"

"Make it to the end
It will better you very soon, oh yeah
Rely on your friends
They’ll get you through
They’re there for you, oh yeah
Hold on
And suddenly you find your way

Hold on
Till yesterday is far away
Don’t let it get you down
It will bury you, very soon, oh yeah
Come into your own
And then let it go
Don’t you know, oh yeah
Hold on
And suddenly you find your way
Hold on
Till yesterday is far away

When you’ve had enough of everything
All is left is let it go
Hold on
And suddenly you find your way

Hold on

Till yesterday is far away

Hold on
And suddenly you find your way
Hold on
Till yesterday is far away"

She's Alright Now

I have a great deal in which I yearn to share, but am not quite sure where to begin. Therefore, I will just follow the waterfall of emotions in my mind and see where this particular post takes me...

It was very much so like any other day of surgery, with mom and dad and a bag of essentials in tow as I entered the hospital. For the second time since it had been instated at the opening of summer, I was placed into the IR waiting room prior to my procedure with my interventional radiologist. I was somewhat accustomed to these “peanut procedures” now with this particular doctor, and was greatly anticipating this one because of the bout of pain I had been experiencing the entirety of summer. October 1^st, in my mind, could not get here fast enough. Pain, as many of you know, is a vile force to be reckoned with, and I was tired of not being able to sit comfortably. The only comfortable position in which I could muster up on any given day was that of lying on my stomach. Not to mention, if I ever wanted to have a sex life of any sort, this surgery would be undoubtedly be instrumental in helping me to do so.

With that said, the morning of the surgery arrived and I kissed mom and dad goodbye with a mere peck on the cheek as the staff wheeled me into the operating room. I was not scared in the slightest, I had done this “process” (so to speak) too many times before. Not to mention, my trust was placed in the attending performing the operation. He had operated on me in much more dire circumstances prior for several years. For me, this surgery was almost symbolic of a new awakening; one in which I was addressing a problem that had been bothering me for quite some time now...not just on a physical level, however, but an emotional one, too.

I awoke in the ICU with my oxygen level in ruins; apparently, I had a horrific allergic reaction to morphine while under and some fancy word (relating to my breathing level) had dropped incredibly low. What was supposed to be perhaps a 1 night stay in the hospital turned into an 11 day one. I was dissatisfied, but I do not remember the vast majority of what I went through (thankfully). Nor do I blame any of the staff nor anesthesiologists, as their skilled handiwork is what got me through that operation.

I am still, however, having a hard time coming to grips with the fact that that operation could have been my last day on Earth due to the unfathomable allergic reaction I endured while under general anesthesia.

I will write more before long, however for now I am off to retire to bed. Since returning home in mid-October, I have been dealing with a great deal of other life matters (some pertaining to my Klippel, others not). This, I find, is a rather confusing time within my life but I am trying to embrace it with both arms (with the assistance of my family and friends).

Check Out MY New Facebook Page

Hey all! If you are wondering where I have been, I have started a Community Page on Facebook about my struggle with Klippel and mental illness. I LOVE blogging immensely and am not giving up on it by any means - rather this is just a new platform for me to have some fun with as I have been blogging for several years now.

So please feel free to check out my page and like it ( : xoxo - Ari

https://www.facebook.com/Ariannasbeautifullife

I will be updating on here within due time... for now, however, I am just having fun experimenting with the Facebook page a bit. Don't worry though, as I still have heaps of stories filled with trials, tribulations, and happiness that I look forward to sharing on here. 

Sending you all so much love! 

Different Is Beautiful

I like to write with lipstick. ( =

Some days I would quite rather I was not different, but the same as everyone else... - While I appreciate my Doctors and Nurses at the Hospital immensely, they are not people I would have ever wanted to have to know. I never wanted to have to know nor need them. Not in my perfect world, anyway. This, however, is not a perfect world and I am not a perfect person by any means. None of us are, so I am told relentlessly by professionals in the mental health field. They're right - even those highly-esteemed by society for things such as their looks, wealth, occupation, etc. are not perfect... We, as a human-race, are so incredibly far from perfect. We are all designed by something bigger than us, to be who we are. We are not all meant to blend - to the contrary I am afraid. I do not know if I will ever make peace with having this condition prior to leaving Earth someday (when a higher power calls me Home). Despite my contempt for what it has done to me and my family, however, I will learn to embrace what separates me from the vast majority of others out there by not hiding - I will not be ashamed of being different. I didn't choose this condition, it chose me. I will live in spite of it and live my life to the fullest, in hopes that one day I can reach my highest potential in terms of academics, humanity, etc. 

Different IS Beautiful, even though at times it feels like a damn curse.

Musings Prior to Bed: Mental Health, Relentless Pain, Guilt, and Gratitude

I spend a great deal of time in therapy these days trying to sort out the seemingly relentless and never-ending mess present within my mind. More often than not, it does feel as though there is a constant war taking place within my overly-neurotic brain. It's not easy, for I struggle with major depressive disorder, borderline personality disorder (albeit a mild case), and OCD on top of my KTS. Many a days, I find myself wanting to feel at peace, even if it's merely to a minimalistic caliber. I have a great deal of trouble achieving internal calm despite my hardest exertions. Having chronic pain while simultaneously struggling with mental illness can be abominably fatiguing. Yet, I am aware that there are people who have overcome much harsher circumstances, and I always want to be cognizant of that fact. I think it is absolutely vital to be conscious of other worldly happenings. While it does not change my particular circumstances, it does indeed help to add perspective to a rather complex situation.

So, while I may be in a great deal of pain on a daily basis (I have an impending debulking surgery that needs to be done with Dr. Spencer), I do try to be aware that life could be a lot harsher in terms of my life with Klippel. In fact, I was speaking with a dear life-long (non-chronically ill) friend about this on the phone just earlier tonight. What if I had been born in a poverty-stricken 3^rd world county in which there was no place suitable to treat Klippel? I would not have made it past my 1^st birthday, as I was septic at the tender age of 6 months old. What if I did not have parents who were not willing to take care of me when I am unwilling to take care of myself? What if I had to handle my financial burden entirely on my own? Surely, in spite of everything, there is a great deal in which to be thankful for.

However, this gratitude is also followed by a momentous magnitude of guilt, as I cannot help but wonder why I was the lucky one; why was I the one that was born in Boston as opposed to China where Klippel babies are sometimes left on the streets to die (based on superstition of their birthmarks, so I have been told by some reputable sources). Not to mention, the guilt that comes associated with being the chronically ill one in the family that has inconvenienced everyone else. None of this is easy for me to comprehend at this point in my life, and I do not believe that I am supposed to have all the answers as of yet. I believe that in terms of learning to accept my condition in terms of what I have, what it has done to me, and what it has done to others around me, there are layers that will constantly be unraveled as my life progresses.

While I would never say to someone going through a harsh medical situation (whether that be mentally or physically) that it could be worse, the verity is that in my case, I am fully aware it actually could be. There is, however, a fine line between glamourizing my situation because of the fortunate circumstances surrounding me and that of denial... I am still trying to maneuver my way through all of this mess, but I am hoping the chemo med called Sirolimus that I am back on will work some wonders in terms of my physical health. I undoubtedly believe that my physical health has played an active role in further aggravating my mental health (as many Journalistic studies have proven in patients with chronic-illness). Mental health issues run in my family on both sides, and that in itself is something to be aware of as these genetics are often passed down. So, while I fully believe that I would still be dealing with a slew of psych. Disorders (even without the constant distress Klippel has inundated my life with for the vast majority of my time here on Earth), I do not believe they would be nearly as out of control as they are now.

Just some random musings prior to bed as my mind is restless at current.

May you all be well,

Arianna Helena

Hope Breeds...

The Wrath of Life

• I struggle with Major Depressive Disorder along with Anxiety and Borderline Personality Disorder. Both have been a despicable force to be reckoned with over the years, but they have been particularly brutal these past couple of months...especially now. I do see a team of Psychological Professionals, ones who are capable of treating a Chronic Illness Patient of my magnitude. What lies beneath this writing stems from one of the countless nights in which I have found myself at odds with my own mind. If you are experiencing feelings of Depression and/or Anxiety or Distress, reach out to someone you feel comfortable expressing yourself to. Keeping these thoughts isolated in your own mind will only cause more harm. If you are someone who struggles with mental illness and a chronic illness, than you know that life can be seemingly impossible at times. Yet, we must encourage each other to continue on with our Plight to live... I wrote the text below as a way of helping others (who do not face the hurdles of mental illness or Chronic Illness) to understand what goes on within my own mind at times... I hope it can give people a better idea of how draining and utterly manipulative mental and chronic illness can be.

Here goes my story, tritely entitled “The Wrath of Life”. As you will see, there are obvious fictional components to this story. The feelings depicted in it, however, are anything but false.

_______________________________________________________________

My own ineptitude in terms of writing is annoying me on a grand scale right now.

How is it possible for one body to be inundated with such a vast supply of emotion and yet unable to emit it in a manner considered psychologically healthy?

I will give this a try...

Despair is my state of mind. My past haunts my already taunted, fragile soul. Life is stepping on me, watching as I lay helplessly on the hard floor, bleeding profusely. If there is one thing I am good at, however, it is putting on a good show and fooling even those closest to me. I have to, after all, as I have to keep up with the races of everyday life. Perhaps more details go into this “effort” than one would assume...I have to exert all of my energy into it. It requires being insanely alert at all the right times and around the right people. There are, after all, no rooms unoccupied for those who dare commit a mishap. Manipulating those around me has become common practice. It's not that I'm on an ego-trip, however, for manipulation invokes a deep sense of shame within me. However, when I have allowed myself to fall into a million little miniscule fragments to my closest confidantes, Life only shrinks for a short while. So, I continue to manipulate those around me in that I make them believe I can swim and more importantly that I want to keep swimming despite Life. More on “Life” and his heinous ways to follow within this post.

The majority of these days, I find, it is easier for me to stand out from the crowd than it is to camouflage, subconsciously speaking...and when trying to put on a facade of being okay, one must always blend. Blend, my darling, as you would your favorite blush onto the hollow of your cheek... You are in control of the brush, so if any pigment does not blend seamlessly, you are the only one to blame. Shame on you if you so much as commit the slightest error, for Life is always watching. In Life's eyes, there is nothing even remotely adequate about my efforts, ever. Yet, I keep trying, waiting from him to lessen his wretched grip on me (more on that Odious man and his slimy tactics later).

Some time has now elapsed.

“Life, I do not believe myself to be worthy of having yet another shot at you. You've given me numerous second-chances, ones that other children of chronic-illness did not get... Yet I still do not feel any damn closer to the light. And, because I am now so resentful of the light (out of my innate spite for not having found it yet), I may repel myself from it if it ever dare ventures toward me again.”

“Silly child”, Life responds, “pick yourself up from off the floor.”

“I cannot, as you are crushing me with your superiority. My veins, they bleed ineptitude... You're crushing me...do not you see that? Maybe if you would give me an incentive, a tangible one. I'm tired of singing Over the Rainbow. Where is the freakin' Rainbow? Ask Judy Garland if she ever found it...ask her how that worked out for her and her precious little pup. I start humming Over the Rainbow, as there is merely nothing else to do... It is not atypical of Life to do this to me, and I have learned that if I insist on surviving, I must deal with his invasive, spirit crushing episodes. Wanting to end this horrid affair of attempting to live without Life's weight crushing me (as I am told by a slew of professionals) means I am ill, mentally speaking. Maybe if Life did this to them continuously, they would understand.

In truth, Life always bears some of his weight on me, and it makes it harder to breathe. Sometimes I feel as though I am gasping for air while Life digs his jagged feat into the curve of my spine. And then, Oxygen finds him and joins in on the effort. Now I am combating two vile, wicked forces as opposed to the already malignant one I was prior. “Please,” I plead to them, tears spilling down my glum, fatigued face. “You are killing me in every way in which one can be killed! Physically the pain is unbearable and my spirit has already been terminated... What more do you Monsters possibly want from me?" “St...sto.....STOP,” I scream with all the fight I seem to have left within me. "MY SPINE...THE PRESSURE...PL..PLEEAASEEE...STOOOOOP."

My vision is blurred from the hefty supply of my own teardrops. I go to wipe some away with my right hand in an attempt to comfort myself. Only now, Oxygen has seized my right hand, and I can do no more with the physical state of my body.

Life now bears its force upon me even heavier, as a cruel reminder that I will not win this battle based on outlook or my mentality alone. His bare-feet continue to cut through the skin of my back like those of gargantuan needles. I feel hollow as a corpse, and yet I know I am still alive, for I can still hear the tedious, monotonous sound of air exiting my right nostril. I do not plead with Life nor Oxygen, for those Two are relentless. I lay there, just lay there, feeling dead for what feels like an eternity. At some point, I know my body will succumb to a state of slumber, if only that of a short one. I lay there, helplessly, as Life and Oxygen dig into me.

***

At some point, I awake on the floor in a room inundating with daylight. Life is lying right next to me, staring me right in the eyes. He has adjusted his position, his right-hand fingernails now dig, harshly, into my lower right arm. My gaze immediately shifts to remnants of my blood that He and Oxygen left last night. How mighty generous of them.... I am so accustomed to the pain that I am no longer horrified by it but rather nonchalant about it. I close my eyes, telling myself that this is indeed my reality, not a nightmare nor a one time love affair with an unhealthy habit. The new blood interlocks with that of last night's, and I watch them merge into one dried-up pile of despair... In a few minute's time the new blood will have submerged itself with the dry blood and the two will be practically identical. The memory of the blood haunts me...where is that permanent remedy for memory at, anyway?

“It was awfully nice of you to stop crushing my spine last night,Life, but can you please go elsewhere right now?” Just then, the memory of Oxygen enters my mind, but I do not dear instigate Life by bringing him up... After all, I already just asked him for a pretty grand favor. This is Life, after all, and He will not be spited nor belittled under my influence.

There's that sonically induced interference again...one of my nostril's continues to emit air. Life, His demonic eyes staring intently into mine, replies after a few moments of unsettling silence. “Silly Child,” he laughs wickedly, “it's time to get up.” Now, his nails are digging into my skin even harder. “Okay,” I retort. “Okay,” I say again, as though I am trying to convince myself that it all actually will be just that, okay. I get up, all the while Life keeps his grip into my arm hard and steady, and his body mimics mine. For in order to stay connected to me, he must stay on top of my every move. I am a prisoner of Life, only the vast majority of people do not see that. I can conceal Life's very wrath and presence by orchestrating every meticulous detail of everday...from every smile, to what I wear, and don't forget that coquettish laugh of mine...

Life has literally implanted himself into my veins, and there is no way to untangle him from me. Where I go, he leads, for I'm his Jazz Singer and he is my Cult Leader.  

In My Veins

I discovered this song a few months back, and ever since I have been utterly infatuated with it. The lyrics resonate with me due to my experiences with Klippel-Trenaunay Syndrome and the way in which it has impacted my life so immensely. Perhaps you will like it, too. Below are the lyrics that go along with Andrew Belle's song "In My Veins."

"In My Veins"

Nothing goes as planned
Everything will break
People say goodbye
In their own special way
All that you rely on
And all that you can fake
Will leave you in the morning
But find you in the day

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out

Everything will change
Nothing stays the same
Nobody here's perfect
Oh, but everyone's to blame
Oh, all that you rely on
And all that you can save
Will leave you in the morning
And find you in the day

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out

(No, I cannot get you out)
(No, I cannot get you)
(Oh no, I cannot get you out)
(No, I cannot get you)

Everything is dark
It's more than you can take
But you catch a glimpse of sun light
Shining, shining down on your face
Your face
Oh your face

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out
(No)

No, I cannot get you out
(Oh, you're in my veins)
No, I cannot get you out
Oh no, I cannot get you

I'm Back

Hey, everyone. I hope you are are genuinely well. I apologize for not updating for quite some time; I've been on a bit of a roller-coaster lately in terms of my mental and physical health. My last surgery did indeed take place, but went horribly awry in some aspects. It was nobodies fault by any means, but it turned into an 11 day inpatient stay at Boston children's hospital as opposed to that of of maybe day surgery or 1 or 2 days...

Writing is something I have been incredibly passionate about for several years now; the entirety of my life I have felt misjudged by the vast majority of my colleagues in a slew of ways. With writing, however I get to reflect and present myself in a way that I am too awkward to do so in a verbal manner...that, in itself, is incredibly soothing and cathartic to me. I also write about issues

I am exceedingly passionate about, like having Klippel-Trenaunay Syndrome and the ways in which it has impacted my life thus far. Mental health is another topic readers will see me discuss frequently; why does it take Robin Williams (May God rest his soul) killing himself for depression to make headlines? While many were aghast that such a loved man could not find strength to hold on, the truth is this disease impacts mere mortals everywhere. 

I look forward to sharing some of my experiences with you as my far as my Klippel, mental illness, experiences at CHB, and other personal matters are concerned. You will never see me holding a scalpel or be behind the laser of a machine that has helped save my life numerous times, but I hope to save lives in a different way. That is what envokes a burning flame within my soul. I have found my passion throughout the past several years, and despite my obstacles I hope to achieve them. 

In the meantime, though, I do believe in the kindness of strangers as the Klippel family has kept me afloat on many of my off days. They are no longer strangers, though, but treasured friends despite where they end up on this sometimes rather unpredictable, jagged journey.

When I started this post, it was my first time writing since my last one. I was not even quite sure I would be able to construct a simple sentence let alone write in paragraph form...here is to hoping this was somewhat edible in content. 

I greatly anticipate writing more incredibly soon,
Ari

The Significance of October 1st

Hey everyone! My next surgery is this coming October 1st. I am not afraid of the anesthetic part, as I am rather accustomed to that by now. I do, however, have other reservations in regards to this surgery... This particular surgery holds a great deal of sentimental value to me because of its location. When walking, my inner butt-cheeks swipe against each other and it is so incredibly uncomfortable. What if this does not correct that? What ifs, I know from my my psychological studies and therapy sessions alike, stem from anxiety. In the long run, what ifs will get you no where good, that much I have learned over the past few years.

Even when this particular area is not being touched, it feels as though there are sharp pains going through it. It does not impact my vaginal region, but merely the area directly outside of it. It stems from the anal region. Someday, when in love, I hope to be able to express it to the person in which I am with through my body. My sexual abuse history not included, I am indeed a virgin and have no shame in that. My body, more often than not over the years, rejects my own bacteria for a living. To have someone else's bacteria enter that region so close to where I get infected (my buttocks most often) is a risk and I have to be careful about how I carry myself. I do not believe in settling, but rather believe in waiting until love. Not only does this correspond to my own personal morals, but to help keep my Klippel as tame as possible.

So, in essence, this surgery means a couple of things to me: the biggest one is alleviating the amount of pain in which I am in on a daily basis. I do not take any pain medication for this aside from meloxicam (an NSAID)  on a daily basis which is meant to help me walk on my lower leg without being in treacherous pain. Aside from the pain factor, I want to help alleviate the rough texture and pain in this area so that I can be sexually active someday when the time is right. My main priority is undoubtedly the daily pain, but it is hard not to think of my future with a man as well.

Aside from this, I will be having some c02 laser done to help with growths scattered across my buttock regions. I have had this done a multitude of times before so I am not scared of the this particular procedure. Perhaps the only thing that scares me is that the open areas act as an opening for infection, but Dr. Alomari has agreed to throw me on a prophylactic for approximately 5 days. I feel he tends to be more conservative in terms of antibiotics, so I greatly appreciate him agreeing to do so.  I'm allergic to 3 classes of antibiotics and often grow resistant to some, so throwing me on antibiotics is not as simplistic as it may seem. However, due to my past with sepsis, I think he is willing to do so. Not only that, but I do believe he wants me to feel more at ease and less worried about acquiring an infection following this procedure. He is, indeed, a wonderful doctor in every way in which one could be.

In the meantime, I have been dealing with a clot (which we suspect to be deep as the lidoderm patches did nothing to help ease my pain). I have been dealing with this particular issue since Saturday, and it has been rather difficult mentally as I did want to have a bit of fun prior to the surgery. However, it hurts to walk down the hallway so gallivanting to do random errands (which, sadly enough, I consider fun) is not feasible.

Emotionally, I am still struggling despite ongoing and continuous therapy sessions. The other day, after leaving a session, I took the elevator down to the first floor (where my car awaited me outside) and fell to the floor crying. It felt as though the room was spinning, and that all the oxygen in the room had evaporated. I should mention that I think highly of my main talk therapist; she is helping me in ways no one has ever helped me before. She is amazing, and I wish it hadn't taken me so long to find her. Still, I do have something entitled borderline personality disorder and my mood varies greatly at times for seemingly no reason at all. Somedays, I awake crying and can hardly find the volition to get out of bed...daily living is a struggle. Separating reaction to an ongoing illness versus mental illness is no easy challenge, and yet I finally feel as though I have found a team that has managed to do so. I would be lying, however, if I said that Klippel did not play a role in my mood...I do not think any professional would deny that. There have been countless studies on how chronic illness impacts the brain, and this illness has been going at me since birth.

I will end off here for now, as I have another therapy appointment I need to be up for early tomorrow. It feels like Wednesday is an eternity away, but I do believe it will be a step in the right direction. For now, I am merely trying to get through the next 4 days as best as I can, emotionally and physically speaking.

I sincerely hope you all are well...truly, I do. I have not been on my personal fb page nor answering barely any phone calls as I have been an emotional wreck. I know I am not the first person kt go through this and won't be the last... We just have to keep hanging in there, I suppose! Also, please, never be scared to ask for help if you feel you are struggling in any manner. There is no shame in merely asking for someone to help you navigate your way through life in the midst of a difficult time...

Just wanted to extend a sincere thank you to those who continue to believe and support me.

Love always,

Ari

Imminent Surgery

Hi everyone! I have not updated in a bit as I have been rather busy maintaining my health (both emotionally and physically speaking). The picture in which you are viewing is not exactly the most pleasing to the eye, however it is a picture of the growths in which I am going to have operated on soon by Dr. Alomari from Children's Hospital Boston. These growths, despite how minuscule they may look, are prominent in a rather unpleasant place (further explained in my previous post "Underneath Your Clothes") Due to their location, I have an extremely hard time wearing underwear. Not to mention, they are located in an area that is incredibly sensitive in terms of nerves and sitting is rather uncomfortable... I am in a constant amount of steady pain. No matter what location I position my body in, they tend to hurt a great deal. I am not on any pain medicine to alleviate the ache as this is a chronic issue. On a daily basis, I take an NSAID called Meloxicam which has helped momentously in terms of being able to walk on my leg. Prior to discovering that medication, walking in general was an arduous task so difficult I thought I would be wheel-chair bound for the remainder of my life. However, this medication does nothing to alleviate the vast discomfort of these growths. Located beneath the surface of these particular growths is a lymphatic malformation (which, of course, stems from the Klippel Trenaunay Syndrome), so we are not quite sure how they will respond to the injections in which I will receive during the imminent surgery (I do not yet have a specific date, but it should be happening prior to this month's end). I have been informed that this surgery will likely be the first in a series to help alleviate the discomfort in this area. 

In addition to these growths, I also have a slew of others that are larger in nature that are scattered on my right butt-cheek and a couple of other various sensitive places. These particular growths will be removed using c02 laser, which I have found to be an extremely successful method in eliminating growths of these sorts in the past. Recovering from c02 laser can be a bit of a hassle, but I have found that it is worth the end result. My biggest concern, in terms of the c02 laser, is acquiring a cellulitis infection. Sometimes, my body skips the cellulitic route and heads straight to sepsis despite me seeking immediate attention upon symptoms of an infection first occurring. To be rather honest, I am haunted by the memory of the multitude of times I have awoken from a night of slumber with a 105 temperature and massive infection. Despite rushing to the hospital immediately, I would find out I had a massive cellulitis infection or was septic. It is not uncommon for me to have dreams in which I relive past experiences concerning serious infections and what not; in fact, these memories slip into my dreams more often than not. I will update again shortly, and appreciate all of the positive feedback I receive in terms of these posts immensely. To have the support system I have is indeed a blessing, and one in which I do not ever want to take for granted. Below is a picture I took last week summarizing some of my feelings in regards to conditions of this sort. I will have more of these to come featuring a dear friend of mine (who also has a vascular anomaly) in an upcoming post.

May you be well,

Arianna

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